Hi Everyone,
I just wanted to give you all an update on how Owen's surgery went...
We are just over 24 hours home and things are going really wonderful. As I type, Owen is in his jumperoo playing with his toys and jabbering up a storm while the big kids nap. He is such an amazing guy, he doesn't have time to be upset- its all smiles and sunshine for him! We're so blessed <3 My sister, Jennie came up with her girls to watch Ashton and Kiera while we were gone. Cousin Nikki also came over to lend a hand. We are so thankful for the family and friends that can help us through these hiccups. We couldn't be the people we are or make it through without them. Thanks guys!
The surgery itself went as expected, with no surprises. We had a comical moment in the OR when Owen got the gas to relax him for his IV's. The tech asked if he would like the gas flavored... I said I don't think Owen cares and we can save it for a kiddo who really needs it. The tech said, 'yea, at this age anything I put on his face is going to make him mad.' I cradled Owen and the tech put the mask on him- in perfect Owen style: he smiled ear to ear and started laughing. He laughed a few good belly laughs then drifted to sleep. The OR staff couldn't believe it!
After 1 1/2 hours in surgery, a quick 1 hour in the short stay unit for recovery and a bottle of eye drops later we were sent on our way. His eyes look really good! I can't believe the change we already see. He is now looking at us with both eyes and not crossing, he looks so much different to me. I said it yesterday and can't think of a better way to say it... he's my little butterfly -always changing into something more beautiful. His smile is as wide as ever and his personality comes through even stronger when he looks at you. We are so thankful for the medical miracles that his doctors and surgeons are able to achieve. He doesn't seem to be in any pain, however we have been giving him Tylenol every six hours too keep him that way!! We have weaned down his cortisol (stress hormone) to his everyday stress coping levels and he seems to be tolerating that just fine. We have to 'pump his body up' with triple doses to cope with the stress surgery, since his own body does not do that for him.
We will be traveling back to St. Paul next Tuesday for his post-op eye check, repeat audiology tests and a pre-op visit for his cleft palate repair. We will also be scheduling his palate repair surgery on Tuesday- it will be so great to have that date set on the calendar for him!
I was at the store today and passed up a onsie shirt with a toolbox on it that said 'high maintenece' ...It was really adorable and would have been perfect for him if it would have been in his size! :-P
That's it for now. We are VERY thankful for all of you and your prayers. I know God hears us!
We'll talk to you soon! Love and Hugs, Shelby & Sarah Fox
Friday, August 27, 2010
Tuesday, August 17, 2010
Slow and Steady...... the turtle will win the race!
Hey Everyone,
I've decided to start a blog. I think it's going to be a better medium for sharing our families news -at least a better medium than my facebook notes page :-) I also understand if you don't want to read it all and just skim it for the highlights... it's just as much for me as it is for you. I think purging our life on paper has become a therapeutic way for me to process everything that goes on in our lives. Things have been pretty busy here -not that they are every really slow!! We have been enjoying the Summer weather and getting time to have fun out and about and at the lake. It's been a great Summer so far.
Ashton is continuing to make great progress in physical therapy. He has been fitted for orthopedic supports that help keep his ankles better in line with his legs and will help to prevent 'flat feet'. His low muscle tone have allowed him to turn in his ankles and it makes him wobbly when he walks... the supports really seem to be helping so far! He is responding well to his growth hormone shots. He's grown just over one inch in the last three months! This is a pretty big deal, since he has not grown at all in the last year prior to starting growth hormone. He is still shorter than his peers and his muscle tone is low, but we are seeing improvement in both of these areas! He is doing very well in physical therapy and has a great relationship with his physical therapists. They are wonderful blessings and are so patient with him. He is now walking with very little assistance. He walks well just holding on with one hand.... slow and steady. We are continuing to work on his confidence issue, as we believe that he 'knows better' when trying to walk that if he falls it will hurt. He is so careful... He's too darn smart! We are working on potty training, however with his limited mobility skills it has proven to be a big challenge. We are now working on potty training both him and Kiera together- teamwork! ...and we're still working on it!
We recently visited the Mayo Clinic in Rochester for his 3 month follow-up since beginning growth hormone. His levels are still low, but steadily increasing as we adjust his daily injections to his bodies tolerance. His blood work also showed that his thyroid releasing hormones are steady, but his cortisol (the bodies stress response) levels are on the decline. We know it is likely that Ashton's pituitary will eventually become non-functioning like Owen's... we just pray it won't be so soon. We have opted to have a 're-draw' at our local clinic where they will send out Ashton's blood work to see if the numbers would improve before we choose to begin a lifetime of medication for him. Keep on praying! But like Owen, if his levels are consistently low we are blessed to have the availability of medication to 'cure' him of his deficiencies.
At Mayo we also had the pleasure of visiting with our Geneticist. We haven't learned anything from the many genetic tests we have sent out ... I take it back -we've been told Ashton is 'normal' a few times! That's pretty encouraging! :) We are still exploring the realm of astronomically rare genetic conditions and we are fortunate to have a geneticist that is unhappy with the unknown. We have ruled out nearly all of the Recessive X disorders/gene quirks available. (meaning that we have ruled out almost all the gene disorders that only effect boys in a family) It now seems possible that we are just lucky that Kiera was born unaffected by the problems that Owen and Ashton share. We are now looking into some Autosomal Recessive gene quirks that may point us toward a diagnosis. (Autosomal Recessive: both Shelby and I would have to be carriers of some quirky gene that makes quirky kids) All possibilities seem to be pointing toward the transcription factors of the genetic code (pieces of the DNA that turn on/off other genes) We will be sending out blood work this week, but don't expect results for a couple of months. It's alot to take in... trust me, I know! We are hoping that at some point we can ultimately pinpoint the specific genetic quirk that caused Owen and Ashton's shared symptoms. We also know that we might never find it, but we pray that science will reveal the truth to us. It may not change the here and now of our situation, but it could open up possibilities for future therapies and also provide information on whether our kiddos (Kiera in particular) could pass this genetic quirk on. There's a lot of benefit to knowing, but what we know now is enough too.
Owen is doing pretty darn good! We have worked VERY hard and are happy to share with you that he is no longer using his g-tube! He gets all of his medicines and formula orally! WOOO HOOOO!! This is such a huge deal! We have not used his tube site for nearly 3 weeks! We got a great tip on some 'squeezable' bottles and we've been in business ever since. Our doctors would like us to leave his button in for an additional 3-5 months to ensure we do not have to put it back in for some reason, but we are on the right track to being a tube-free kiddo! He has really made the transition well! He's really a go-getter. He's been handed so many lemons, I think he's become a real lemonade expert! He's eating pureed foods once and sometimes twice a day and really enjoying the new flavors and textures. We sometimes find that the more acidic fruits/veggies irritate his nose lining and so we stick to the more bland purees too keep the experience positive until his palate closure. We expect his palate closure surgery to be in late September or early October.
Next Thursday we are scheduled for surgery on his eyes. He has 'congenital estropia' -he's unable to uncross his eyes. It's making seeing and tracking objects very difficult for him (imagine looking at things with your eyes crossed all the time!!). The great news is: we know he has perfect vision/eye health! The bad news is: with his eye muscles holding his eyes crossed, his perfect vision isn't doing him a whole lot of good right now. We suspect he sees a lot of double images and that's having some affect on his gross and fine motor development. On the 26th we will go to St. Paul Children's and have an outpatient surgery to correct and straighten his eyes. We will probably have to do some eye patching following the surgery to retrain his eyes, but we are hopeful that this surgery will let him see the world like the rest of us do. We also know that the surgery is not without risk. It's possible that his eye problem stems from within his brain and his brain is not interpreting the images properly, but we won't know if we can change the situation until we try. More prayers needed!
Owen is otherwise growing and thriving. He has a very magnetic type personality. He smiles, squeals and his whole body gets happy when you talk to him. He's so social and loves to smile and laugh. He's rolling over and doing well holding his head. He has an Occupation Therapist that sees him on a bi-weekly basis... she's really great! It's nice to have an extra set of eyes following his development.
And then there is Kiera- my little miss sunshine! I could write all day about her. She's so sweet, giving, she's got a heart of gold, she's a daredevil, she's as clumsy as me and has a really sweet personality. She's beautiful inside and out! She's growing so fast right in front of my eyes- I can hardly believe she will be two in a few weeks! She is into everything, on top of everything and learning new things every day. We are working very hard on potty training with her, she gets it... she's just very independent (like with everything else) and is on her own time schedule. We'll get there. It's great to see the relationship between Kiera and Ashton grow, they are best buddies. But, like all good friends- they fight sometimes! :)
Shelby and I are both doing pretty good. It's a constant struggle to find the 'us' time, not just the 'mom & dad' time. We are both aware and consciously work on it. We're stressed a lot but are each other's support and best friends. Thank God we've got each other! We are still working on projects around the house, finding the time to get them done is a huge hurdle. I'm hoping we can get Owen's room done and our entry way floor and trim re-installed soon. those are on my wish list. :) Then on to the downstairs and our master bathroom. Ahhhh...... the plight of the do-it-yourselfer. We once claimed we had more time than money. ha ha ha... and now by the looks of our undone projects- both are in short supply! LOL!!
I guess that's our new news. Like I said before, I now it's A LOT of information and stuff... we are so proud and blessed with our kiddos and we are really blessed to have you all in our lives to help us through the bumps. We can't do it alone! Lots of Hugs & Love to you all!
Sarah & Shelby Fox
I've decided to start a blog. I think it's going to be a better medium for sharing our families news -at least a better medium than my facebook notes page :-) I also understand if you don't want to read it all and just skim it for the highlights... it's just as much for me as it is for you. I think purging our life on paper has become a therapeutic way for me to process everything that goes on in our lives. Things have been pretty busy here -not that they are every really slow!! We have been enjoying the Summer weather and getting time to have fun out and about and at the lake. It's been a great Summer so far.
Ashton is continuing to make great progress in physical therapy. He has been fitted for orthopedic supports that help keep his ankles better in line with his legs and will help to prevent 'flat feet'. His low muscle tone have allowed him to turn in his ankles and it makes him wobbly when he walks... the supports really seem to be helping so far! He is responding well to his growth hormone shots. He's grown just over one inch in the last three months! This is a pretty big deal, since he has not grown at all in the last year prior to starting growth hormone. He is still shorter than his peers and his muscle tone is low, but we are seeing improvement in both of these areas! He is doing very well in physical therapy and has a great relationship with his physical therapists. They are wonderful blessings and are so patient with him. He is now walking with very little assistance. He walks well just holding on with one hand.... slow and steady. We are continuing to work on his confidence issue, as we believe that he 'knows better' when trying to walk that if he falls it will hurt. He is so careful... He's too darn smart! We are working on potty training, however with his limited mobility skills it has proven to be a big challenge. We are now working on potty training both him and Kiera together- teamwork! ...and we're still working on it!
We recently visited the Mayo Clinic in Rochester for his 3 month follow-up since beginning growth hormone. His levels are still low, but steadily increasing as we adjust his daily injections to his bodies tolerance. His blood work also showed that his thyroid releasing hormones are steady, but his cortisol (the bodies stress response) levels are on the decline. We know it is likely that Ashton's pituitary will eventually become non-functioning like Owen's... we just pray it won't be so soon. We have opted to have a 're-draw' at our local clinic where they will send out Ashton's blood work to see if the numbers would improve before we choose to begin a lifetime of medication for him. Keep on praying! But like Owen, if his levels are consistently low we are blessed to have the availability of medication to 'cure' him of his deficiencies.
At Mayo we also had the pleasure of visiting with our Geneticist. We haven't learned anything from the many genetic tests we have sent out ... I take it back -we've been told Ashton is 'normal' a few times! That's pretty encouraging! :) We are still exploring the realm of astronomically rare genetic conditions and we are fortunate to have a geneticist that is unhappy with the unknown. We have ruled out nearly all of the Recessive X disorders/gene quirks available. (meaning that we have ruled out almost all the gene disorders that only effect boys in a family) It now seems possible that we are just lucky that Kiera was born unaffected by the problems that Owen and Ashton share. We are now looking into some Autosomal Recessive gene quirks that may point us toward a diagnosis. (Autosomal Recessive: both Shelby and I would have to be carriers of some quirky gene that makes quirky kids) All possibilities seem to be pointing toward the transcription factors of the genetic code (pieces of the DNA that turn on/off other genes) We will be sending out blood work this week, but don't expect results for a couple of months. It's alot to take in... trust me, I know! We are hoping that at some point we can ultimately pinpoint the specific genetic quirk that caused Owen and Ashton's shared symptoms. We also know that we might never find it, but we pray that science will reveal the truth to us. It may not change the here and now of our situation, but it could open up possibilities for future therapies and also provide information on whether our kiddos (Kiera in particular) could pass this genetic quirk on. There's a lot of benefit to knowing, but what we know now is enough too.
Owen is doing pretty darn good! We have worked VERY hard and are happy to share with you that he is no longer using his g-tube! He gets all of his medicines and formula orally! WOOO HOOOO!! This is such a huge deal! We have not used his tube site for nearly 3 weeks! We got a great tip on some 'squeezable' bottles and we've been in business ever since. Our doctors would like us to leave his button in for an additional 3-5 months to ensure we do not have to put it back in for some reason, but we are on the right track to being a tube-free kiddo! He has really made the transition well! He's really a go-getter. He's been handed so many lemons, I think he's become a real lemonade expert! He's eating pureed foods once and sometimes twice a day and really enjoying the new flavors and textures. We sometimes find that the more acidic fruits/veggies irritate his nose lining and so we stick to the more bland purees too keep the experience positive until his palate closure. We expect his palate closure surgery to be in late September or early October.
Next Thursday we are scheduled for surgery on his eyes. He has 'congenital estropia' -he's unable to uncross his eyes. It's making seeing and tracking objects very difficult for him (imagine looking at things with your eyes crossed all the time!!). The great news is: we know he has perfect vision/eye health! The bad news is: with his eye muscles holding his eyes crossed, his perfect vision isn't doing him a whole lot of good right now. We suspect he sees a lot of double images and that's having some affect on his gross and fine motor development. On the 26th we will go to St. Paul Children's and have an outpatient surgery to correct and straighten his eyes. We will probably have to do some eye patching following the surgery to retrain his eyes, but we are hopeful that this surgery will let him see the world like the rest of us do. We also know that the surgery is not without risk. It's possible that his eye problem stems from within his brain and his brain is not interpreting the images properly, but we won't know if we can change the situation until we try. More prayers needed!
Owen is otherwise growing and thriving. He has a very magnetic type personality. He smiles, squeals and his whole body gets happy when you talk to him. He's so social and loves to smile and laugh. He's rolling over and doing well holding his head. He has an Occupation Therapist that sees him on a bi-weekly basis... she's really great! It's nice to have an extra set of eyes following his development.
And then there is Kiera- my little miss sunshine! I could write all day about her. She's so sweet, giving, she's got a heart of gold, she's a daredevil, she's as clumsy as me and has a really sweet personality. She's beautiful inside and out! She's growing so fast right in front of my eyes- I can hardly believe she will be two in a few weeks! She is into everything, on top of everything and learning new things every day. We are working very hard on potty training with her, she gets it... she's just very independent (like with everything else) and is on her own time schedule. We'll get there. It's great to see the relationship between Kiera and Ashton grow, they are best buddies. But, like all good friends- they fight sometimes! :)
Shelby and I are both doing pretty good. It's a constant struggle to find the 'us' time, not just the 'mom & dad' time. We are both aware and consciously work on it. We're stressed a lot but are each other's support and best friends. Thank God we've got each other! We are still working on projects around the house, finding the time to get them done is a huge hurdle. I'm hoping we can get Owen's room done and our entry way floor and trim re-installed soon. those are on my wish list. :) Then on to the downstairs and our master bathroom. Ahhhh...... the plight of the do-it-yourselfer. We once claimed we had more time than money. ha ha ha... and now by the looks of our undone projects- both are in short supply! LOL!!
I guess that's our new news. Like I said before, I now it's A LOT of information and stuff... we are so proud and blessed with our kiddos and we are really blessed to have you all in our lives to help us through the bumps. We can't do it alone! Lots of Hugs & Love to you all!
Sarah & Shelby Fox
Friday, August 6, 2010
Everything before August 2010
Monday June 6, 2010
I can't believe it's almost been 6 months since Owen arrived! The last six months have been a remarkable journey and test of our stength as a couple and family. We've had a lot of stress, tears, heartbreak, tense moments and roadblocks. There were/are many days we wish we could throw in the towel and retreat... but we don't- we can't. We pull together as a family and find inspiration in our children. Owen has such an amazing spirit to triumph against all of the challanges he has faced in his short life. He has been through a lifetime of adversity and has never forgotten how to laugh and smile. Ashton's strength and persistance is an inspiration for all and Kiera's compassion and love is a lesson we could all use a refresher course in. The road that had been laid out for us is pretty muddy and bumpy, but it has been paved over with optimism, the support of our family and friends and the blessings of God. It's so easy to get down about the hardships we face everyday, but we try our hardest to set our focus on the accomplishments and miracles that happen all around us. I now, more than ever believe: God has a plan!
Last week Owen had a day filled with follow-up appointments in St. Paul. His endocrine doctor is pleased with how his body is responding to all of the replacement hormones, they will continue to monitor them throughout his life to adjust as his body requires. We had a feeding clinic appointment where we were very happy to announce to our Speach Therapist that Owen is no longer g-tube dependant during the day- He is taking all of his daytime formula by bottle!!!!!!!!! This is such an amazing accomplishment for our little guy! We've been working so hard together with him on his bottling skills and he's doing amazing!! We have found a bottle & nipple that we are able to put some pressure on to keep the flow going for him, but he's doing all of the swallowing work! He is still getting some formula via g-tube overnight to compensate for the calories he is not yet able to intake fully during the day, but he is doing GREAT with bottling! We are really proud of him!
We beginning to see some similar gross motor and some minor fine motor delays (very similar to Ashton's developemntal path) with Owen. We are working with an Occupational Therapist, who comes to our home bi-weekly, to evaluate and make suggestions for his developemntal progress. Dispite his motor delays, he's very very social and loves to smile, laugh and jabber at everything and everyone!
The tubes in his ears look great, however they are making it difficult to get a proper hearing screen accomplished. We will have to go back down to St. Paul to have a more indepth hearing study while he is under some light sedation to make sure he is hearing properly. We are sure that he is hearing well, but as required by the state- they must get a positive hearing screen. So, we will make another trip to St. Paul as soon as the scheduling department informs us of available dates.
Two weeks ago Owen had another eye exam to address his frequent eye crossing. We found out he will needs surgery on his eye muscles to correct the problem. The muscles in the inner corners of his eyes are too tight and require surgery to correct. His eye crossing is also causing him to 'cross fixate' (using his left eye to look right and right to look left). We are hopeful that the surgery will correct this problem as well, but also know there are other visual therapies that will help him if surgery alone does not work. We are expecting the surgery to happen in July, a couple months before his palate repair. Our optomotrist is being proactive in contacting Owen's other doctors to see if she can 'piggy back' any other procedures while his is out for the eye surgery. -even if it's just a blood draw, at least he doesn't have to be awake for it.
Our days and weeks are usually pretty packed and I apologize for any relationships outside of our immediate circles that have been neglected as a result. I am without a doubt that you all understand, but I do miss the more social relationships that have been pushed aside for now. It's a struggle a lot of days to get more that 20 minutes for Shelby and I to talk as adults! We are working on our relationship and try to find time for us as a couple (not just us as Mom & Dad), the last 6 months have not been easy in that regard... the added finacial strain of our medical bills, traveling and the hick-ups of daily life have easily compounded the stress, but we are doing what we can. -Maybe not all we can... with our luck, we probably should at least buy a lottery ticket every now and then! LOL!! We are still plugging along on many projects around the house, but it takes time... or should I say free time! -much of what we don't have. Slow and steady!! -the turtle wins the race! (we may have to adopt that as a mantra)
Ashton and Kiera are doing great and love Owen so much! Last week I watched Kiera walk over to Owen on the floor, stop and gave him a hug... for no reason, just because she wanted to. I could have cried. She is full of so much love for her brothers it is unbelievable. Ashton is done with PT at the school for the Summer. Ashton and I are both going to miss Mr. Brown and the kids over the Summer however, we will continue PT with Rachel at the Hospital two days a week over the Summer. He is making huge strides and becoming much more stable and closer to walking independantly.
Shelby and I are so proud of our children and all they have accomplished- It makes it very easy to count our blessings. As always, we want to thank all of you for your love, support and prayers. We couldn't do it or be all that we are without you!
Love & Hugs, Sarah & Shelby Fox
Thursday May 13, 2010
Owen had his first surgery on Monday! He looks different, but amazing! He did very well through the surgery and is mostly back to his normal happy self, with the exception of getting pretty frustrated with his "no-no's". -They are little arm splints that go over his elbow joint making it impossible for him to touch his mouth. He has to wear them for a couple of weeks when unsupervised. They made him pretty upset, but I try to take them off as much as possible when I can defend his face from his curious hands. He also cannot have his pacifier for 3 weeks- he's doing pretty good going cold turkey, but I can certainly tell he misses it.
Things went fairly routine during surgery. They put tubes in his ears to help with drainage, as most kids with clefts have a harder time getting a good hard swallow to open up the little ear drains. It is mostly a proactive measure to hopefully avoid any bad ear infections going forward. -knock on wood... 3 kids and not one ear infection yet! His lip repair looks pretty good! It is a little hard to get the full picture yet, because he still has a little tape strip over the dissolvable stitches and swelling, but from what we can see- it's shaping up pretty nice! He will have a second surgery in a few months to repair his hard/soft palate (roof of his mouth) and one more a few months after that to 'touch up' his deep wrinkle (the beginnings of a bilateral cleft lip on his left side) and any other imperfections from the first surgery. His cleft was exceptionally wide, so we expect there will be some touch-up work to do as things relax and heal. Again, we were fortunate enough to have Grandma and Grandpa Fox watch Ashton and Kiera while we stayed overnight with Owen. They are the best! Shelby and I both went with for the surgery. The appointments and surgery dates are quickly eating up Shelby’s vacation time. We are using some family medical leave days, but they are unpaid. Hopefully we’ll get a chance to use just a couple of his vacation days for a real kind of vacation someday. :-)
Life is defiantly more hectic than normal- but I don't think we really have a normal anyway! With Owen's rigorous regular med schedule and the post operation extra meds and cares it's taking a lot of work. It's all worth it and Ashton and Kiera have been angels about things. They are the best kids ever! Ashton is continuing to make progress in Physical Therapy and frequently walks just holding on to one of our hands now! He and Owen both started daily injections of Growth Hormone last week- here's hoping it will help Ashton build the muscles he needs and help Owen continue on a normal gross motor development path. Kiera is still my spitfire and saint. She has a heart of gold, but can sass with the best of them.
I guess that is most of the update for now. We sincerely want to thank each and every one of you for all of the prayers and wishes you have sent our way, we are blessed to have such a great circle of family and friends. Thank You!
Love, Sarah & Shelby
Thursday April 15, 2010
I just want to give everyone an update of how things are going at the Fox house! Since my last entry we have found out that Owen appears to have a non-functioning pituitary. Originaly we thought that it was working a little, but the latest bloodwork has shown us otherwise. Even though the malformation is identical to Ashton's it seems to be manifesting differently. We are thankful that modern science has given us the ability to monitor and replace everything he needs. He is going to grow and develope normally, but will be dependant on mendications for most of his life. He currently takes thyroid meds, cortisol meds, and testosterone injections 1x a month for the next few months and will be on growth hormone injections soon. For the last month I have been constantly on the phone with Mayo and Children's to get the growth hormone approval process through insurance for both of our boys (Ashton's pituitary is partially working, but he is growth hormone deficient). It's been a nightmare. I can't believe how complicated and sticky the whole process can be. I have spent hours on the phone... It baffles me how insurance can drag thier feet on the approval process for medications that are deemed medically necessary to the quality of life of the individual. It makes me sick.
We are still waiting on some genetic testing for a specific gene issue.... we hope to have some results in the next few weeks, but we're not banking on the results giving us too much info. Our boys are pretty unique according to our geneticists and might not share too much in common with the rest of the worlds population! The particular gene issue they are looking at now only has 7 documented cases since 1978. :-/ It really doesn't matter to us in the long run. God has a plan.
Last week Owen had a swallow study and feeding clinic. He passed for 'thinned liquids' ...HOORAY!! That means regular formula! With the help of the speech therapists we have found a bottle that he does pretty well with! Yup, that's right.. Owen is finally able to start taking some of his formula by bottle!! He is able to drink between 1/2 and 1 oz of formula over the course of 15 to 20 minutes from the bottle before he gets tuckered out, but it's amazing to be able to feed him like a regular baby and do something for him that he enjoys... not just 'hook him up'! He works so hard and really does enjoy his bottle, but we still need the g-tube to supplement what he is not able to get by mouth.
Owen also had his surgical g-tube replaced last week with a 'mickey button' -it's more of a plug in than an extention cord. His surgical tube was about 9" long and had to be fished through all of his outfits. Now he has a little button about the size of a nickel on his belly that we plug into when he needs to be fed. He is overall doing very well. He is laughing outloud and smiling a lot now! It makes me feel better knowing that he is enjoying his life and not upset about all of the 'work' things we have to do for him everyday. He's got so much to be frustrated and cranky about, but still manages a smile and laugh for me everyday. I love his attitude! <3
We are still making weekly trips to St. Croix Falls to Owen's orthodontist. She has him fitted with what looks like baby dentures. Every week we get them adjusted and the denture/appliance piece helps to pull his soft gum tissues back together and is prepping them for the best surgical outcome. It's been amazing so far! Dr. Cermin is a miracle worker! -she is a pioneer in her field... VERY few cleft babies in the country have the oportunity to get this special appliance. We are very fortunate that she is located so close to our home. When he was born I could probably fit my the tip of my index finger through the gap in front of his gums, now in just a couple of months with weekly adjustments I can barley get my pinky through the gap! It's a blessing and it helps him use his bottle much more effectivly right now!
We have scheduled his lip repair for May 10th! -less than a month away! It seems surreal that we are almost there. I will miss his HUGE smile when his lip is put back together. I know the cleft is still a shocker for the people that haven't met Owen yet, the appliance and tape greatly improve his outward apperance... but I have to be honest and say that I don't see it anymore. I know it's there, but I can see that he's beautiful just the way God made him too.
Ashton and Kiera are wonderful. Ashton can have his sassy 3 year old outburst now and then, but he's a real treat! He's so darn smart and funny! He just has this charisma that pulls you in. He's doing great in physical therapy and is accomplishing more physically every week. Kiera is such a little lady. She loves all girly things.... and all on her own! She loves her hair done, necklaces and pretty clothes. She's the sweetest. She's also given up her bottles- Kiera the sippy cup queen! Without a fuss she gave them up one day and that was it! She's also learning more and more every day. She counted to 10 with Nikki Fox tonight! I can't believe how smart she is too!
Shelby and I are doing great as well! We are always busy, but try to squeeze in a few minutes a week to relax and talk to eachother like adults :-) I'd be lying if I said life was always sunshine and rainbows, but there aren't too many rain clouds either. We keep an upbeat attitude about everything... We are both pulling on the same end of the rope- we look forward to when we don't have to pull so hard and we can give are arms a break!
That's probably more than enough for tonight. Thanks everyone for keeping us in your prayers! God's listening!
Love, Sarah and Shelby
Thursday Feb 25, 2010
Hi Everyone! Owen's almost 2 months old already and has been home for nearly a month! I just thought I would put up an update on how the Fox family is doing with our new addition at home. It's been kind of a ratrace for most of the month, however we are enjoying all being under the same roof!
Ashton and Kiera very much love thier new little brother and frequently share toys, talk to him and comfort him when he is upset. They are both such helpers. Ashton just turned 3 and is as quirky and goofy as ever- getting smarter by the day and expanding his communication skills by leaps and bounds! His mobility is improving and he is gaining the muscle strength and confidence he needs to be more independant. He has physical therapy at the school 2 days a week now in the special needs room and really enjoys it! He loves his physical therapist (Rachel) , Mr. Brown (special needs teacher) and the special needs kids that he interacts with. We opted out of the clinical setting for the special needs room at the cumberland middle school- Thank you Mr. Brown for letting us do this and for participating in our experiment! The special needs room has more equipment better suited for his small size and it is really helping his mobility and confidence. The students with extreme special needs are a wonderful inspiration for us and great motivators for Asthon. He enjoys interacting with them during his physical therapy sessions- he has his own cheering section. It's really sweet.
Kiera is doing really great. She is such a 'big sister' to both Ashton and Owen and frequently helps them both. Her vocabulary and skills are just exploding! I can't believe the things she is begining to say. She's so beautiful and a real sweetheart, but boy can she be a sassy pants too! She keeps me on my toes every second! She climbs, pulls up, runs and hides and gets into everything. If it's not nailed down or out of her reach -it's hers. Luckily she has the smarts and sense of responsibility to bring me anything 'yucky' she finds.
Owen has appointments every week to have his orthodondic palate piece adjusted to help move his gums/tissues back together to better prepare him for his surgeries. His orthodontist has a saying for kiddos like Owen: "some assembly required." Everything is in the package, just needs to be put together in the right places to look like the picture on the box. -we really like the lighthearted humor! She is very happy with how things are coming together -he looks so much better with his orthodontic palate piece in.. it give him full upper gums. His ortho Dr. added in a little nose bud (little push piece) to the top of his palate piece that is helping to help re-shape the nose structures. -all inpreperation for his lip surgery on May 3! This surgery will repair his lip and bit of nose that is open. He will probably have a touch-up cosmetic surgery later to smooth out any wrinkles, but the plastic surgeon is expecting beautiful results from the first surgery alone.
We are getting pretty use to his eating schedule and medication schedules. I have set alarms on my cell phone to alert me when it is time for his meds or 'bottle'. Instead of making bottles, we fill a bag and 'hook em' up' -he doesn't seem to mind and is getting the oral stimulation he needs from his pacifier. He loves his pacifier. He as trouble keeping it in and we often have to kind of wedge it in with clever placement of a blanket or his fist.
He's had a few follow-up appointments with the ear, nose & throat specialist -we established he will have tubes put in his ears when he has his lip surgery. They will help to drain the fluid that is getting blocked up by his inability to get a good swallow and 'un plug' his ears. The tubes will surely help with that and avoid ear infections going forward. We have scheduled the switch over to a button for his feeding tube. Right now he has the surgical style tube -kinda big and cumbersome. In april he will be swapped over to a 'button' that is flush with the skin and is more of plug in, than an extention cord. :-)
Genetic testing is ongoing. They took Shelby's and my blood to see if they can find any relation/glitches in our DNA that might help us solve the Ashton/Owen mystery. Since Asthon and Owen share the nearly identical pituitary hypoplasia- they are pretty certain it's genetic. Just trying to pinpoint where the glitch is so we might have a clearer long term picture. Like I've said before, the results probably won't be earthshattering or change the immediate future/treatment for either of them, but it might help us plan further ahead into the future.
I have contacted Ashton's specialists at the Mayo clinic and have informed them of Owen's birth and similar 'quirks'. We will be visiting Mayo with Ashton on March 10/11th. We are insistant, now more than ever that Ashton begin growth hormone therapy. It is obvious with Owen also sharing the same pituitary defect and having endocrine issues that Asthon's defficiency is without a douby pituitary related and not an affect of any other environmental factors.
With everything going on with the kiddos, Shelby and I are still finding time to enjoy the things we like and are very blessed to have the family and friends to help us out on occasion too! I really can't tell you how much we appreciate and how greatful we really are for everyone that has extended well wishes, offered to help or has helped us out. We are blessed. Thank You All!
I guess that is it for the moment. We'll talk to you all soon! God Bless, Shelby and Sarah
Sunday January 31, 2010
Well- as most of you know Owen was discharged from Children's Hospital, St. Paul on Tuesday morning!! We had a 'learning day' on Monday. We learned about his medications, dosages and times, we got some more litrature, filled perscriptions and met with our geneticist and endochronologist.
Owen's geneticist has been collaborating with Ashton's geneticist at Mayo in Rochester to see if the genetic dot-to-dot can be finished, however it looks like there is still some work to do. Niether senior geneticist (20+ years for both of them) has seen a case like Ashton or Owen. They are certain that thier nearly identical pituitary hypoplaisa (pituitary in 2 pieces) is the result of a recessive X gene. -meaning both Shelby and I are carriers of some genetic quirk that is passed on to our boys. ...they are just trying to find out what gene within the chromosomes that is.
We are waiting on the genome hybridization array for Owen to see if the concentrations of the study can highlight an area that may have been missed in Ashton's array- but those results will take some time yet. Really, like I said before: the information will be good to have, but the results will probably not give us a clear view for the future. We will replace hormones that thier pituitary's are lacking as needed, but niether geneticist has seen anyone like our little guys and that doesn't give us a lot of 'history' if they can isolate the gene. We'll just play it as it goes. :-)
Our endochronologist met with us and ordered some more tests to make sure Owen's other hormone levels stay within his physiological ranges.
After discharge we scooted over to Gillete Specialty Clinic within Regions Hospital in St. Paul and had Owen fit for his palate appliance piece and a surgery consult. He was so good for everything!! He doesn't seem to mind his 'baby dentures' and it already makes a huge difference in the way he looks! We'll be going to St. Croix Falls- to thier primary orthodontic clinic every week for fittings and adjustments until his surgery in a few months. While we were at Gillete Hospital, Owen also had a CT scan of his head to check the bone growth and fushions. -results aren't in yet, but we are hopeful that they are normal as we haven't got any phonecalls with immediate concern!
And now- We're Home!! It's been a whirlwind week with all of the kids under one roof. We are very busy with Owen's feeding and med schedule, but it feels more 'normal' everyday. He's being a real trooper and starting to assimilate to his new surroundings and family. Ashton absolutley is in love with 'Baby Owen'! He had a very long kid conversation with Owen as soon as he set eyes on him and consoles him when he gets upset.... it's really sweet! Kiera is doing great with Owen as well! She often brings him a little toy and sets it next to him and already says his name! -they both have been great about not touching Owen's tube (his feeding tube) ...they both have made the transition much easier.
Shelby and I are doing pretty good. It's a lot of adjustments to 3 kids, and not to mention the extra special needs that come along with Owen. We are starting to feel more and more confident with all the quirks, med/feeding schedule and other things to remember -once we get comfortable with things we have to work on training others in the hopes we can escape the house for a few hours at a time. Grandpa Al has already volunteered and is eager to get trained on Owen's feeding pump- what a guy! We are a little swamped with follow-up appointments and meetings for the next few months, but we were prepared for that and know it's going to be a long journey ahead. Thank God we have eachother! I guess that is the 'gist' of it for now!
We can't thank all of you enough for your support and prayers to get us home. We are so incredibly blessed and thankful!
We'll talk to you soon! ~Sarah & Shelby
Saturday January 23, 2010
Yesterday we traveled to St. Paul for 'at home' classes. We had an infant CPR class and learned how to better position Owen for when he is sleeping for his GI tube feedings. We also learned how to administer emergency hydrocortizone injections (as we have found that he is cortizone deficient as a result of his pituitary malformation) -he will be on daily medication for this, however if he ever has a traumatic illness or injury he will need an emergency injection to help his body deal with the extra stress. Our last training was for his feeding pump and supplies for feeding him via GI tube. The nurses have been very helpful in preparing us for life at home and showing us how to give him his medications via GI tube.
So, It looks like Tuesday is our take-home day -his one month birthday!! We will arrive to Children's early in the morning and get all of his discharge work done then we will visit Gillett Hospital for his appliance form/fitting on the way HOME! We are really excited and anxious at the same time. Our 'at home' coordinator has given us a full binder of information and a calendar packed with follow-up appointments. While we can't wait for his discharge, we know that life will still be hectic and full of new adventures in the months ahead as we settle into our new normal. But like Dorothy says, 'there's no place like home!'
Talk to you all soon! Sarah & Shelby Fox
Saturday January 16, 2010
Owen had surgery for his GI tube yesterday (feeding tube) and everything went as scheduled and so far so good! They clamped off the drainage last night and he is tolerating that very well. They have reduced his pain meds down to just tylenol and he doesn't seem to mind that at all either- such a tough little man! We just talked to the lead neonatologist a few minutes ago and they will start feeding him via GI tube today starting at 3cc and hour then up to 5cc an hour for today... kind of a 'whimpy' dose to start with, but we don't want to push him to hard while he is still recovering :-) They will then slowley eek up the amounts in hopes that he will build his tolerance up so he can have larger feedings less often and not have to have these tiny continuous feedings all day. -he's almost 3 weeks old and really hasn't had to use his stomach yet... so just like a newborn we're going to start out little by little. We are hoping that this week his feedings will continue to improve and that the speech people will be in to work with him on bottle feeding. Like I said before; he won't be able to get all of his calories via bottle and that is why he has a GI tube, but will be able to take some formula by mouth to make him happier.
Owen's geneticists at Children's here and Ashton's geneticist at Mayo are now collaberating on the possible biological/DNA links between Owen and Ashton. They have orderd a DNA hybridization study on Owen's DNA to compare to Ashtons (Ashton has already had this study, so 1/2 the results are in). -much of these results will not be life changing, but will help us to better understand and possibly classify any syndrome/symptoms that might be unique to each one or similarities that they might share.
We are still waiting on IGF1 results (human growth hormone.. what Ashton is deficient in) test results to come back. It's possible that Owen may also have this same defficiency. Owen is receiving daily tyroid medication for hypothyroidism (body not producing any thyroid) and will likely have to for the rest of his life, however with daily treatment.. a little pill- there will be no long term issues. They are weaning down his hydrocortizone levels to the bodys natural production levels so they can test to see if his own body is producing the proper amounts. -really- most of the quirks we are still dealing with lie in the hormone department... Thank you God and Science for giving us the ability to replace what his body does not make naturally without any adverse side effects. Science is a blessing.
It was so great to walk in his room this morning and see him without any tubes going into his mouth or nose! - he looks so much happier, and we know he is! The one attending nurse said Owen smiled at her a couple of nights ago... another little ladies man in the Fox house!! The nurse is also moving him to a crib today too.. she said she'll put a mobile in it for him to look at too!! The plastic surgury crew should be here this week to fit him for his appliance piece for his upper palate cleft. It's really going to help him a lot until he can have his surgery. Life is getting much better for our littlest man, we just have a few more quirks to work through to get him home- but we are taking 'baby steps' in the right direction everyday.
Thanks for keeping us in your thoughts and prayers. <3 Shelby and Sarah
Tuesday January 12, 2010
Hi everyone, we are in St. Paul today with Owen and Papa Al is home with the little kiddos. The day is going pretty good. We are learing more and can see positive improvements everyday- Owen is a real tough guy. He had his MRI yesterday...Owen's initial bloodwork showed undetectable levels of TSH and Tyroid hormone- pointing toward a possible pituitary problem. Through the MRI we have confirmed that Owen and Ashton have more in common than thier handsome looks and dramatic entrance into the world! <3
As with Ashton, the MRI findings have shown us that Owen's pituitary glad has a malformation. It appears that it is producing the hormones it needs to with the exception of thyroid hormone and possibility growth hormone (just like Asthon). We are waiting on the (IGF1) growth hormone test results. -so far we have an official diagnosis of Hypothyroidism... the upside is- this is completly treatable with a tiny pill taken daily! They are going to continue to wean him down off of hydrocortizone (another pituitary regulated hormone) to be sure that his body is producing an adequate supply over the next week. All other areas on his MRI appear normal and seem to be functioning normally!
We had a very productive talk with an endochronologist this morning following the MRI results and are very comfortable with the game plan at this point. We learned a lot about what is going on with Owen as well as some of the very clear similarities to older brother Ashton. It seems they may be a real matched set! LOL :-) So far so good... looks like things are going to be somewhat easily tuned and not require any further testing (other than bloodwork).
Today Owen no longer has a breathing tube! Yippee!! and doing great with resperating on his own! His xrays show that the phnemonia is clearing from his lungs and getting better everyday. -he is currenlty on day 7 of the 10 day antibiotic treatment. He had another echo-cardiogram yesterday and everything appeared normal... the small hole in his heart is getting smaller every day and looks as though it will close on it's own just fine. He is scheduled to start formula feedings via feeding tube from his mouth to belly- if all goes well (him not getting any in his lungs) they will very likely schedule him for his GI tube (feeding tube) on Friday. -but we'll play that by ear.
I guess that is all for now- probably enough anyway ;-) Thanks for keeping us in your thoughts and prayers. We still need them!
Sarah & Shelby Fox
Saturday January 9, 2010
We are here in St. Paul again today and heading home this afternoon to be with Asthon and Kiera... we miss them like crazy when we are away too! It's a hard situation leaving them, but we always know that we are leaving them with people they love and have a lot of fun with!
Owen's respritory distress continued to get worse over the course of the week. The aspirations (fluid/formula that was getting into his lungs) began to take a toll on his little bitty body. They performed additional chest x-rays on Wednesday. When the x-rays were reviewed they could see that his lungs were 'cloudier' and in the early stages of phnemonia. His blood pressure in his lungs was high (showing that his lungs were stressed from the infection) and his cardiac bloodpressure was low from his lungs not being able to deliver enough oxygen to the rest of his body. -this being said- The Doctors had a breathing tube put in that supplied him a little extra 'push' of air, but also some nitous oxide to alleviate the pressure and stress on his heart and lungs. They also began a 10 day antibiotic treatment to nip the infection in the butt before it got out of hand. They discontinued his feeding tube from his mouth to his belly for now, until they get his lung stuff under control and are giving him all the fluids he needs via IV at the moment.
The last couple of days he looks so much more rested and comfortable!! We started reading 'The Wizard of Oz' to him during the down time.... did you know Dorothy's slippers are SILVER in the book??!! Not Red!
The last few days we can really see that he isn't trying so hard to breath and you can see that he is feeling better and getting the phnemonia out of his lungs. They are also performing a multitude of additional tests on his hormone levels and gland secreations to make sure that all other functions are normal. -hopefully within the next two days he can have his breathing tube removed and be back to breathing room air.
His palate impressions for his appliance have been delayed until he is more stable, but in the big picture we're not looking at any huge delays at this point. ...just a little longer. "be patient mommy" -that is what Ashton tells us all the time. -guess we'll take his advice on this one! :-)
We'll continue to keep you all posted. We are very thankful and greatful for each of you and for the positive thoughts, prayers and comments you have sent our way! *Hugs!*
Sarah & Shelby
Tuesday January 5, 2010
Owen is 1 week old today!! Again, I can't thank you all enough for the prayers, kind words and extending us your support! We are very greatful to all of you!! The gameplan is perpetually changing and I though you would like to hear how things are going at the moment.
Yesterday Owen had a swallow study that showed he is aspirating regular formula (getting some in his lungs)- they tried a gel thickened formula resulting in him not aspirating as much, but still aspirating. The gel thickened formula and special nipple worked very well for bottle feeding, however the speech techs are not convinced that he has the stamina to intake the minimum caloric intake required for a baby of his size by bottle feeding alone. His cleft is making it difficult for him to create a good enough vacuum to finish a whole bottle without getting completly exhausted. His cleft is also allowing some of the formula to 'goop' up in the back of his throat making things doubly difficult for him and not at all helping with his oxygen saturation. Once he has the formula in his belly he is experiencing a stage 3 reflux ...refluxing all the way up to the back of his throat from his belly (that's kind of some normal baby stuff really!). For this reason they are keeping him on an incline when lying down. He has had a bit of labored breathing today and the Doctors put him on an antibiotic IV drip because he aspirated a some of the formula during the swallow study and his lung xrays are a little 'wet' looking. . -better to error on the safe side!
All factors considered we are electing to have a GI tube (little feeding tube to his belly) put in to help him along and be sure he is getting his nutritional needs met so he is strong and healthy enough for discharge, for home and for lip surgery in a couple of months. -we've been told that a GI tube would very likely be required during the healing period following the lip and palate surgeries as well.
We have found out, just like our other little ones he prefers to sleep on his belly! :-) He has been recieving some photo therapy for Jaundice the last couple of days, but is suppose to be 'out of the lights' tonight! He'll be so happy to be able to have his sunglasses off! He likes to pull and push them off a lot! He also had a chromosome test and those test results have shown that he has all pairs! His sugars have stabilized and no longer require monitoring.
He is really a very strong kiddo! -in all ways! He has been lifting his head and turning it from side to side when on his belly! He also has been kind of scooting around up and down his bed. He's really giving the nurses a run for thier money- they joke that they're not use to active full term babies around there!
They postponed his appliance fitting until next week- they really want to sort out his feeding/respitory issues before they irritate him more.
I guess that is the update for now! Things are taking a little longer than we originally expected, but we are being patient and giving Owen the time he needs to get better.
Talk to you all soon!
Sarah & Shelby
Sunday January 3, 2010
Just a quick note tonight. I know... it's nearly impossible to write a quick note- there's so much every day, but I will do my best to condense it down.
I went to St. Paul with Jen & Kali to visit Owen today! He got to sleep in a crib last night and the nurses told me he did really well. He was a little spit-uppish overnight, but they are continually increasing the amount of formula intake on his feedings and he's just working on keeping more in. ...kinda normal baby stuff really! ;-) I was a bit sad to see when I got there that he was back in his isolet (little incubator) getting 'light therapy' for some jaundice. ...again, normal baby stuff, but I that meant I wouldn't get to hold him today.
His blood sugars were very good and they are decreasing his IV fluids as his sugars stay stable. This is GREAT news! Once his sugars are continously stable he will be able to be off of all IV fluids and that means they will remove the last IV line! woo hooo!! Overall he is doing pretty darn good! He's such a tough guy and so sweet! He rarley cries and when he does he is very easy to soothe. The are always commenting on what a good natured baby he is. So today we stayed for a few hours and held his hand and rubbed his belly and back. I gave him a quick fingertip kiss before I left and told him I would see him tomorrow.
Shelby and I are back in the afternoon tomorrow for his swallow study and Tuesday for his appliance fitting. ...we'll keep you posted. <3 Sarah
PS- Ashton and Kiera are doing wonderful with the disruption of thier normal day to day.. We are so incredibly lucky to have them handling everything so well! I can't wait until we can all be together as a family!
Saturday January 2, 2010
Hi Everyone,
First of all I want to say THANK YOU to all of our Family and Friends that have extended thier words of support and prayers to our family. We are really blessed to have such wonderful people in our lives, you all mean so much to us and we could not make it through such difficult times without you. I also want to say a special thank you to Al & Deb Fox for thier never ending generosity and love. They have been caring for Kiera and Ashton while Shelby and I are with Owen at Children's in St. Paul.
So- just a quick update on how Owen is doing. He is at Children's Hospital in St. Paul in the NICU unit. He is off nearly all of his IV fluids.. they are continuing to increase his formula intake at each feeding and once he is up to his minimum fluid intake via mouth he will be off all IV's!! This means he will be able to move from the isolet (little incubater type enclosure) to a crib! It will be so much easier to take him in/out and hold him when he is in a crib! Hopefully by Monday he will be in a crib!
On Monday he will have a swallow study to determine if there are any barriers (besides the cleft) that would prevent him from bottle feeding. This is a very important step- we have to have feeding issues resolved before Owen can come home! On Tuesday Owen will be fit for his appliance (a retainer type mouth piece) that will help him with bottle feeding and forming his soft tissues for surgery in a couple of months.
Jennie (my sister), Kali (my sister in law) and I are going to visit Owen in the morning. I'm not sure if there will be anything new to report tomorrow, but I will get a chance to hold my little sweetheart and that means more to me than any test result! -I'll try to post again after Tuesday... Shelby and I will be in St. Paul Monday and Tuesday for sure.
Hi Everyone,
I am sorry for the delay in annoucing Owen's birth- we have had a very busy few days! Owen Albert Fox was born on Dec 29 at 1:55pm weighing in at 8lbs 6oz. He has beautiful brown hair and we are not sure what color eyes yet (they are pretty grey right now)
-Owen's Story-
On Tuesday I went in for the scheduled induction. After being hooked up to all of the fetal monitors we quickly found out I was having some mild contractions on my own! Yippe! So to get things moving along, I was hooked up via IV to the pitocin and having regular contracions about 1 1/2 to 2 minute apart. Around noonish my water broke. Dr. Carlson came in quickly to check things out and we discovered there was some blood in the water (water should not have blood in it). That's when things started to fly! -an ultrasound tech was quickly called in to check on baby and the placenta ...everything looked good? Dr. Carlson made some calls to the specialists in the twin cities to find out how they would progress. After about 10-20 minutes we had 2 choices: be very cautios and let the labor progress naturally or opt for a C-section for the 'just in case' there is something more serious going on'. We made the decision to have the C-section. We felt it was the safest route for baby and myself.
Once the decision was made we had 20 minutes for prep and transport to the operating room. The team that got me prepped worked like NASCAR! Once the anystesiologist administered the pain meds they pulled a sheet up and went to work- 3 Doctors and 5 nurses scurried around with amazing speed. It was less than 8 minutes and Owen made his entrance into the world. It was pretty apparent from where I was lying that the focus quickly went to him. After 2 short cries his breathing efforts failed. Two of his Doctors and the anythesiologist worked to clear his lungs. After extracting 2 very full vials of bloody fluid the helicopter was called.
One Doctor and nurse in the haste worked to put me back together. All other hands on deck were with Owen. The team immediatly went into rescue mode and was performing CPR and put in rescue IV fluids. Owen was recessitated after a few minutes and breathing with the help of a ventilator. The source of the blood seemed to be a small lesion where the placenta had torn away from the uterus in the days prior to delivery. This is very important as, if there was a full seperation of the placenta Owen would not have made it.
The helicopter team arrived at the hospital. By that time the Cumberland Hospital team had him and myself in stable condition. Upon further exam we quickly realized that Owen has a Cleft Palat and Lip -with the aspiration of the bloody fluid and cleft they transported him to Children's Hospital of St. Paul to the NeoNatal Intensive Care Unit.
Shelby left shortly after the helicopter did to be with Owen and I was discharged less than 24 hours after my C-section (on very strict orders/husband supervision) to be with Owen. ...and that is where we are today.
Owen is doing very very well! He's a trooper!! A multitude of tests have been performed to look for any underlying damage/problems that could be lingering and all tests have come back negative. He so far has passed with flying colors. They will be removing some of his IV's today and as soon as we can get his feeding situation established we are much closer to going home. We talked with a plastic surgeon yesterday and they are more than very hopeful that his cleft palat and lip will be repaired before he is a year old. -we got to see some before and after pictures of other children with the same issues and the results are stunning! You would never know that they were born with a cleft palate/lip.
So in the coming days/months we know we will face some very unique challanges for our new little guy, but are amazingly blessed that he is with us and healthy. We want to thank all of you for your well wishes, prayers and concern. I'll try to keep you posted in the next few days or so, but my energy is on getting myself better and Owen home. :-)
Love,
Sarah & Shelby Fox
11.09.2009
GRRR....really frustrating news today! The bloodwork/tests that were sent overseas for Ashton's GH Gene in July were never sent! I have been callling Mayo every two weeks waiting for the results and finally today they figured out that the bloodwork was never sent! So.... more waiting! hmpf!
10.20.2009
Just a quick note: last week we had Ashton's fasting blood sugars taken. He went to the clinic 3 mornings in a row before breakfast or any food (not a happy guy!) Only 1 morning did he have a dangerously low glucose reading. Dr. Kumar (growth Dr. at Mayo) will interpret the results and get back to us.
I got in touch with the Cumberland early childhood program this week! Lots of paperwork and testing to do, but it looks like when Ashton turns 3 he will get to go to 'school' for a few hours a week. This program coupled with his physical therapy should get him on a steady track to greater independant mobility! *exciting!*
10.05.09
Hello Family and Friends,
We had another visit to the Mayo Clinic last Thursday. Ashton was scheduled for appointments with his neourologist, endochronologist, pediatric eye exam and with his geneticist. The day went rather well! Ashton was very well behaved all day and didn't get too worked up with the poking and proding! His neorologist is very happy with his progress- we are making steady gains dispite his mobility challanges. His speach and cognative abilities are up to par with other kids his age and we are working with a physical therapist at the Barron Mayo clinic extension to get his body up to speed.
The meeting with our endochronologist (growth doctor) revealed that Ashton has only made slight gains in height and weight. She is pleased with his developement and has opted to follow him for 5 more months before we begin any growth hormone treatments. At his age she has said to us there is no dire need to begin treatments as he won't lose any growth potential in the long run. She does have a mild concern that even if we start treatment we may not see any results as his body (for reasons unknown) might not respond to growth hormone. We are in agreement with her to wait a few more months and then prepare an action plan. Dr. Kumar has requested that we have a fasting blood sugar done at the clinic at home to check if immediate growth hormone replacement is necessary. We will have that done next week (it's just a finger prick on an empty stomach early in the morning..Yeah!)
Ashton's eye exam went wonderfully! The optomologists at the Mayo Clinic were amazing and Ashton sat so still and was so super cooperative I couldn't believe it! They were able to see some potential for long term vision problems, he is slightly nearsighted and has stigmatisms in both eyes. It doesn't seem to effect him very much at this stage, however does need to be monitored over the long term. We left the optomologist with an orange sucker and a very light perscription for glasses. We are waiting to talk to our family optomologist to get her opinion on getting glasses for such a light perscription.
The meeting with Ashton's geneticist went well also. We are still (3 months) waiting on the results for his growth gene that were sent to Europe. Dr. Ellison said it is common for these tests to take a longer amount of time to process. He said one more month of waiting at the most. We discussed other blood/dna type tests that can be easily performed in the future dependant on the results of the first test. The visit to genetics was primarily monitoring, however we have lots of faith in Dr. Ellison and his investigative abiliites.
So our search continues. We are reminded that Asthon is happy and healthy, just small and has some mobility challanges. We are confident these are adversities that Ashton's great sense of humor and personality will have no problem overcoming.
07.28.2009
Hi Family & Friends,
Our visit to Mayo last week didn't go quite as we expected.... Ashton appears to have grown just under 3cm and gained a few ounces of a pound. This being said Dr. Kumar (growth dr) does not want to start him on Growth Hormone until he is able to gain more weight. I'm not sure what she expected to happen over the last 3 months??- he hasn't gained much over a pound in the last year dispite a high calorie diet- whole milk w/carnation instant breakfast in it, cheeses, meats, snacks and more. He is a light eater, but is getting enough calories. Ugh- all of his blood work shows he is getting the proper nutrition, he just can't seem to get bigger or gain weight. It's really frustrating. Dr. Kumar believes that Growth Hormone injections will do nothing for him if he can't gain weight to balance the length he will gain from the injections. She would like to wait another 4-6 months to monitor any changes
So we are still searching for the ultimate answer to: Why is Ashton so small? The great news is that we met with Ashton's neourologist and she is very pleased with his progress in his cognative/social abilities! His comprehension and brain functions are still a bit ahead for his age- which is wonderful news!
Lastly we had an appointment with our Geneticist (Dr. Ellison) -we really value his views and respect him as a Dr. very much. After a quick chat about the genetic possibilities of having another child with the same quirk (pretty unlikely) we discussed a very very high tech test to see if Ashtons Growth Hormone Gene Receptors are working properly and telling his body to make/not make Growth Hormone. It is a possibility that his pituitary, however malformed it is, has the ability to produce Growth Hormone. His Gene Receptors in his DNA may be telling it not to make any? -A bit space-age for people without a neourology/genetics/astrophysics degree! Dr. Ellison is not satisfied not having a real reason for Ashtons small size, but is very clear that he will not turn Asthon into a lab-rat to experiment with. He wants to find out what is going on and then decide what actions we should take. He has also been very clear in telling us that anything we find beyond this point is astronomically rare, but he's confident that we'll get there and have the comfort of knowing.
So Dr. Ellison requested a bit of Ashton's blood be sent to the only lab in the world that tests the Growth Hormone Receptor Gene be submitted- it is actually going to Germany! Results should be ready in a month or so. The best part is they have some of Ashton's extra blood cryogenically frozen, so no need to stick him again!
We are remaining optomistic that we will someday find an answer to explain his tiny size. It's true that frustration and helplessness does get the better of us somedays and we feel like the only ones in the world who can really understand the emotional toll and stress of all kinds this puts on us, but then we look at our handsome little comedian and know that we wouldn't trade him for anything. We take a lot of comfort in the fact that his cognative, social and comprehension is uneffected by whatever is going on with his body. His personality is easily twice the size of him! He is such a comedian- as one of the interns in the genetics office told us 'it's obvious he is not missing the humor gene'...as he is siging songs into a magnadoodle pen ;-)
We thank you all for keeping us in your prayers and supporting us as we continue on our search. Love you all very much,
Shelby & Sarah
7.23.2009
Hey Everyone,
We are off to the Mayo Clinic for Ashton's scheduled visit tomorrow morning right away. Our first visit is with the Endochronologist (growth Dr) and the second visit of the day is with the Neourologist (brain/developement Dr.).
We are hoping to start Growth Hormones tomorrow. In 3 months of blood draws Ashton's blood has had 'undetectable levels' of growth hormone in it. At this point not giving him growth hormone would be like not giving a diabetic insulin- his body needs growth hormone to grow and get stronger.
Please keep us in your thoughts and prayers! We'll post info on how the visit went this weekend in the 'Recent News' area.
♥ Hugs ♥
Shelby and Sarah
7.15.2009
Ashton had his final blood draw before we have to go to Mayo on the 24th. We are looking forward to only having blood draws once every three months now! Ashton does great with the nurses and techs until he sees the vials- then the jig is up. Luckily Chris in the Lab at Cumberland Clinic gets him on the first poke every time and our superhero recovers quickly and didn't even want a bandaid! He was much happier with the 2 'Cars Movie' stickers the tech gave him!
Ashton's progress continues to accelerate. He is on his feet more and trying to keep up with Kiera! They are eachothers motivation these days! They both are such blessings and we are thankful to have such amazing babies! Baby #3 is looking happy and healthy and set for December 28, 2009!
Ashton's appointment on the 24th is next week -then off to Mayo we go! I am sure we'll have much more info to share then!
7.7.2009
Just wanted to give everyone a quick update! Ashton's physical therapy is going great and he loves Becky (his therapist). She pushes him hard and really works with him to help him build the skills/muscles he needs to pull up better, stand stronger and eventually walk. We are really encouraged by his progress and see improvement everyday. He is now consistently getting to his feet with the help of furniture and is able to stay in a standing position for longer periods of time. We are really proud of him! Kiera is helping a lot to push him along too, as she is cruising on furniture and getting closer to taking her first steps everday!
We go to Mayo Clinic on July 24, 2009 to hopefully begin his growth hormone therapy. His blood work up to this point has not shown any sign on growth hormone in his blood. We are hopeful that the replacement therapies will get him the boost he needs to catch up.
That's it for now! I'll keep you all posted as we begin his therapies! ♥ The Fox's
05.13.2009
Ashton goes for his second physical therapy appointment on Friday in Barron. He took to his therapist really well and we are doing some new things to encourage his walking and gross motor skills. He has even walked behind his walker a couple times on his own! Yippee!
The Birth to 3 program has proven to be pretty much a joke. The Rep came out to the house twice -once for a pile of paperwork and once to evaluate Ashton's skills. She told us that his skills (with the exception of gross motor are on target) and that since they are still tied up in contract negotiations with the home visiting physical therapists that there are no services avaialble to him -and if/when they become abvailable there is a wait list.
So we have elected to abandon our efforts of working with them -the Rep kept using the term: "if it is too much of a hassle" then follow it with things we could do on our own independant of thier program. She wasn't a real good sales person for her own program! I guess maybe they work more with kids with developemental delays verses gross motor delays with normal inteligence. So we are working with the Barron Luther Middleford Mayo Northland to do some outpatient therapy. -just sucks cause our deductible is maxed again this year and it resets in June. ahg! Oh well.... as long as you pay a little to all the medical facilities you owe, they can't come after you and it doesn't wreck your credit score. It's worth it! We have hopefully found a non-profit funding souce that helps pay some of the co-pays and deductibles for children with ongoing medical needs. We have contacted them- they are out of the office until the 28th of May, but we got our name in there! Lets hope! ♥ Love you all! Keep us in your prayers!
04.28.2009
Just a quick update to let you all know that Ashton had a blood draw last week that was sent to Mayo. All hormone levels (with the exception of Growth Hormone) were normal! Yeah! So we are gaining more data to support the possibility that what little pituitary gland is there, is working pretty well for him right now. Growth Hormone levels continue to be 'undetectable' in his blood. We will continue to monitor his hormone levels now and again until our July appointment at Mayo where we will then establish what hormone replacement therapies will be needed.
We also had a meeting with WI Birth to 3 program today -with a diagnosis we are able to qualify him for physical therapy programs offered in our area. Our case worker was pretty helpful, but it is painfully obvious that the system is tied up with a lot of bureaucracy. The paper work and evaluation process is a nightmare and we were told that the physical therapy services are not avaialble through them at the moment as they are in contract negotiations with the pediatric physical therapists -and the system is backed up. UGH. We have made an appointment for Thursday with the Mayo clinic extention in Barron for a Pediatric Physical Therapy Evaluation with thier pediatric therapist (one of 2 in the area). So -here's to progress! Slow and steady wins the race!
Thanks for the prayers and supportive messages!
04.11.2009
One Wednesday we again went to the Mayo Clinic in Rochester for a follow-up appointment to review the results of Asthon's biopsy and MRI.
We finally had a significant breakthrough and were given some insight as to what is going on with Ashton. The muscle biopsy came back normal, however during the review of the MRI slides the specialists were able to see that a significant portion of Ashton's pituitary gland is missing. A typical pituitary gland looks like a kidney bean implanted smack dab in the middle of your head with an anterior and a postierior piece joined together to give it a bean shape. Ashon's pituitary is two seperate pieces. One piece is (the anterior portion) is the size of a pea and the other piece (the postirior) is nearly absent, but there is a small piece there and it's shaped like a almond sliver. This condition is extremly rare and the reason why it was not suspected until this point.
The pituitary gland is called the 'master gland' as it produces nearly all of the hormones our bodies rely on to work properly. If you google 'pituitary gland' you can learn a lot about it! :-) Luckily for us, what little there is of Ashton's pituitary gland, it is working to produce nearly all of the hormones his body needs, with the expeciton of growth hormone. The level was 'undetectable' in his blood!
This is a major finding for us! The lack of growth hormone coupled with the un-natural shape of his pituitary gives us the most likely reason for his tiny size. (he is the size of a 1 year old) This too could certainly be a reason for his muscle tone problems, as growth hormone regulates your muscle to fat ratio.
It is great news to know that what his pituitary gland does not produce can be replaced/fixed by bio-identical hormones that are scientifically engineered to be exactly what his own body would produce. We are now in the process of establishing his 'baseline' of hormone output so we can accuratly judge how much replacement hormones he will need. We have also been comforted by the fact that if/when we start giving him growth hormone to replace what his body is not producing -it will only do what his body is pre-determined by his DNA to do. It won't make him a giant, it won't make him un-naturally large, it won't make him anybody but what God intended him to be. Replacement hormones will work with his body to reach his growth potential, not freakishly large or anything -just what he is suppose to be.
So this new news has been truly empowering! We now feel like we have control over what is going on and are learning more everyday. We will visit the Mayo clinic again in July to do bloodwork and to likely begin the growth hormone therapies. We will continue to monitor his progress and have also begun the process of getting Ashton some physical therapy to help him get his muscles up to par faster.
So that's it for now... here's hoping! ♥ Shelby & Sarah
04.01.09
Hey All~ Yesterday we were in Rochester again for Ashtons scheduled appointment. Ashton had his MRI and Muscle Biopsy.... so far so good! He is such a brave little boy! He got to take his cookie monster in the MRI and Operating room with him! The nurses even gave cookie monster a wristband to wear! The procedures took about 3 hours to complete and Ashton came out of the anystesia very well again this time! -just a litte groggy and gassy from the breathing tube! peew! He will have a scar on the top of his left thigh were they took out the piece of muscle for biopsy (1cm x 1cm) -pretty big for such a little man! If you figure he is 1/6 the size of an average person -that would be like taking out 6 squared centimeters out of an adult! Ouchee!
But it hasn't slowed him down at all! He is still very active and crawling/climbing around getting into everyting. We are giving him tylenol & ibuprofen in alternating doses to make sure he doesn't have any pain and reduce the swelling.
So, we are closer than ever to an answer for our little superhero. The MRI and Biopsy were the last tests on the list and the specialists should now have a complete inside & outside work-up to review and give us a final diagnosis.
We are keeping in good spirits and are enjoying every minute with our children! Thanks everyone for your thoughts and prayers! ♥ The Fox's
03.23.09
ALL chromosome, DNA and genetic abnormality tests have come back normal!
03.12.09
ALL gastrointestinal test results have come back normal!
03.09.09
Hey Family & Friends,
Today went well! Ashton was anestitized for his EMG and his endoscope -and so far all tests results appear to be normal (with exception of the low growth hormone screening). He did very well with the sedation, however it took ALOT to knock out -the initial oral dose didn't fully knock him out like most kids! He was still pretty darn alert and talkative with everyone! They followed up with an IV to finally get him out! The nurses were a little surprised such a little guy took so much! I think I am going to self diagnos him with 'super hero syndrome' -you just can't get the kid down -in any sense of the word! He is amazing! Ashton was again in good spirits and came out groggy, but quickly recovered and was eating/drinking/playing in about an hour!
Even though the news is good so far, it is a double edged sword. We don't have an answer yet and therefor we have a couple more tests before he has been fully explored inside/out! We are still digging and trying to get to the root of why his gross motor skills and physical size are more at a 1 year level. Thankfully he has not completly stalled out, just not progressing nearly as fast as his peers. On a high note: this week he is more consistently pulling up to stand with the support of furniture now!
We met with our neorologist following the procedure and she again assured us that she is confident that his brain/cognative abilities are normal -and infact advanced for his age. She belives that his muscle problem would appear worse if he wasn't so smart -his brain is compensating for what his body is unable to do. ex: his fine motor skills are awsome! -it takes more brain power to control the fine motor skills than muscle power.
So on March 30/31st we have scheduled an MRI to check his pituitary gland (growth hormone regulator) and to have a hard mucle biopsy (from his larger leg mucle). The leading specialist in the world of children's muscle disorders works at Mayo and has agreed to review the biopsy slides to check for underlying disorders.
So the good news is -we asked our neurologist: 'if these two tests are normal, what's left?' and she answered: 'growing older'
It was the perfect answer and what we pray for! We are nearing the end of the mystery will have our difinitive answer soon! Thanks everyone for your thoughts and prayers! We can't tell you all enough how much your support and friendship mean to us!
03.05.09
Hello again everyone,
Thanks for the thoughts & prayers! -and a special thank you to Al & Deb (aka grandpa & grandma) for watching over Kiera as we travel with Ashton! -they are a real blessing to us! We had another appointment at Mayo in Rochester yesterday. ....so far so good -we guess? We have not had any test results give us any earth shattering information or a profound case for any specific disorder/syndrome/disease. While it is frustrating not having a difinitive answer yet, it is relief to have ruled out many very serious problems.
Yesterday we again visited with our Endochronologist who gave us the results of the previous visit. His vitamin levels are normal as well as all of his organ functions (that can be indicated by bloodwork) We did confirm that he does have a lower than normal level of growth hormone in his body -we somewhat suspected this because of his size! ;-) We are still waiting on the results of his bone age testing.
We then moved on to visit a neurologist, who was very infomative and playful with Ashton! -she had a puppet!! -One of Ashtons favorite toys! She was very impressed by his cognative/social/comprehension developent as well as by his fine motor skills -she is confident that he does not have any brain developement related issues and told us that he is actually quite advanced cognativly for his age! She is concerned however with his gross motor delay and muscle developement. It appears that his brain, muscles and nerves are all talking, but his muscles are not nessesarliy able to do everything for him due to lack of tone (hypotonia). It appears that the muscles may not be building propery possibly due to a missing protien compound. She has ordered a EMG to rule out about 50% of mucle disorders -he had a normal EMG at 12 months, but much changes in 1 year in children. Under anystesia they stimulate the muscles with electricity through fine fibers inserted into the muscles and measure the muscle responses. It isnt' painful, but requires him to be very very still.
From the neurologists office we were shuffled to a gastroenterologist who assesed his diet history as well as ordered a barium xray of his gastrointestinal tract and a endoscope (to look with a camera down his intestinal tract) to make sure food is being absorbed and broke down properly or that there isn't anything preventing his intake. We did the barium xray yesterday -Ashton had to drink some fruit punch flavored barium shake while the doctors watched it go through his digestive system on xray. -this part sucked! It didn't hurt him, but scared him a lot. I am sure glad we don't rely on fruit punch flavored anything as a primary food source! The xray room is dark, the table is hard and they had to keep rolling him around from back to his sides to get the right views of the barium fluid in his digestive tract. He got LOTS of stickers and a slinky at the end!
So we are still waiting for a few of the test results and have a few more tests to go. We are nearing the end of the run here and are holding up well. Ashton is such an amazing kid and recovers so well from all of the prodding and poking! They have such an kid friendly attitude and rooms at Mayo it makes life much easier!
We will be returing to Mayo on Monday the 9th for the EMG and Endoscope (both under anythstesia) and will meet with our neourologist to review results -and be one step closer to completing every test imagineable!!
So, as with most superheros Ashton is pretty mysterious! we are currently stumping the best of the best doctors, but aren't at the end of the road just yet. Here's hoping that the answer to everything is nothing! -and that time and maybe some physical therapy will be the perscription!
PS. Kiera is doing very well! Becomming a very active girl and rolling around everywhere as well as experimenting with her voice more! She had her 6 mo check up today and is tracking in the 50th percentile for all of her measurements and is on target for her skills/abilities-just a bit cranky from the shots... ugh! :)
02.27.2009
We had our appointment at Mayo today~ Holy Cow!!! It is beautiful, accomodating and amazingly efficient.... and not to mention the great doctors we had appointments with. Today we had appointments with an endochronologist & geneticist who ordered lots of blood work (5 vials all together with pokes in both arms! Ouchee!) and wrist & knee xrays (checking actual bone age). We did not get answers today, but we did get a lot of hope!
The doctors and technicians we dealt with today were great and Ashton was such a brave boy for everything! Every appointment/xray/bloodwork stop they gave him a toy or sticker! The host in the cafeteria for lunch even gave him a color book and crayons! Ashton greeted everyone today with his usuall cheerful "Hi, How are you?" and was in such good spirits all day! He was a real trooper!
We will be traveling back to Mayo on Wednesday the 4th of March to review todays work-ups as well as see a gastrointestinal specialist, neurologist and visit again with our endochronologist. We are very impressed thus far with the doctors and facility and left today feeling closer to the answers we are looking for!
02.16.2009
Hey All- Thanks for the kind words! We have our first appointment at Mayo in Rochester, MN on Friday February 27th. Our first appointment is at 9:30am with a pediatric endochronologist (specializing in childrens growth) -the we will be shuffled to different specialists that day depending on the reccomendations of the first doctor. Really looking forward to moving on from this and hopefully find an answer for our 'Amazing Ashman' -that's Ashton's super hero name that his cousin Snowden gave to him! Ashton's my superhero!
Ashton Othmar Fox is a super charismatic and social little boy who loves to color, play with his sister, tease the dog and act silly. As most of you already know Ashton just turned two years old and has had a pretty intense medical history so far with multiple visits to Children’s Hospital, clinics & specialists and an array of space-age testing. To date however we have not been able to officially diagnose him with a specific disorder or disease. The only answers we have from any medical professional is that he has a gross motor delay (he is not walking yet –but 4 point crawling like a madman!), is very small for his age (in less than the 1st percentile), and has hypotonia (overall low muscle tone that has made it difficult for him to keep up with his peers physically) -but so far no one diagnosis to explain his challenges. We are still searching for an answer to tie all the ends together.
Ashton’s progress in the past six months has been extremely encouraging with him finally able to independently get to a sitting position, four point crawling, pulling up to his knees, standing with support, greatly expanding his vocabulary and saying three word sentences! –his favorite is Hi, How are you?
January 2009
We just had Ashton’s two year well check today and our family doctor has given us a referral to work with some of the best physicians in the world at the Mayo Clinic in Rochester, MN. We are thankful for this opportunity and in the next few weeks/months we hope to finally put all of this behind us and have a clearer picture of what the future holds for us.
We look forward to keeping you all accurately updated with our progress. We hope you will keep Ashton in your thoughts and prayers!
Love you all!
Shelby, Sarah, Ashton, Kiera & Dixie the Dog
I can't believe it's almost been 6 months since Owen arrived! The last six months have been a remarkable journey and test of our stength as a couple and family. We've had a lot of stress, tears, heartbreak, tense moments and roadblocks. There were/are many days we wish we could throw in the towel and retreat... but we don't- we can't. We pull together as a family and find inspiration in our children. Owen has such an amazing spirit to triumph against all of the challanges he has faced in his short life. He has been through a lifetime of adversity and has never forgotten how to laugh and smile. Ashton's strength and persistance is an inspiration for all and Kiera's compassion and love is a lesson we could all use a refresher course in. The road that had been laid out for us is pretty muddy and bumpy, but it has been paved over with optimism, the support of our family and friends and the blessings of God. It's so easy to get down about the hardships we face everyday, but we try our hardest to set our focus on the accomplishments and miracles that happen all around us. I now, more than ever believe: God has a plan!
Last week Owen had a day filled with follow-up appointments in St. Paul. His endocrine doctor is pleased with how his body is responding to all of the replacement hormones, they will continue to monitor them throughout his life to adjust as his body requires. We had a feeding clinic appointment where we were very happy to announce to our Speach Therapist that Owen is no longer g-tube dependant during the day- He is taking all of his daytime formula by bottle!!!!!!!!! This is such an amazing accomplishment for our little guy! We've been working so hard together with him on his bottling skills and he's doing amazing!! We have found a bottle & nipple that we are able to put some pressure on to keep the flow going for him, but he's doing all of the swallowing work! He is still getting some formula via g-tube overnight to compensate for the calories he is not yet able to intake fully during the day, but he is doing GREAT with bottling! We are really proud of him!
We beginning to see some similar gross motor and some minor fine motor delays (very similar to Ashton's developemntal path) with Owen. We are working with an Occupational Therapist, who comes to our home bi-weekly, to evaluate and make suggestions for his developemntal progress. Dispite his motor delays, he's very very social and loves to smile, laugh and jabber at everything and everyone!
The tubes in his ears look great, however they are making it difficult to get a proper hearing screen accomplished. We will have to go back down to St. Paul to have a more indepth hearing study while he is under some light sedation to make sure he is hearing properly. We are sure that he is hearing well, but as required by the state- they must get a positive hearing screen. So, we will make another trip to St. Paul as soon as the scheduling department informs us of available dates.
Two weeks ago Owen had another eye exam to address his frequent eye crossing. We found out he will needs surgery on his eye muscles to correct the problem. The muscles in the inner corners of his eyes are too tight and require surgery to correct. His eye crossing is also causing him to 'cross fixate' (using his left eye to look right and right to look left). We are hopeful that the surgery will correct this problem as well, but also know there are other visual therapies that will help him if surgery alone does not work. We are expecting the surgery to happen in July, a couple months before his palate repair. Our optomotrist is being proactive in contacting Owen's other doctors to see if she can 'piggy back' any other procedures while his is out for the eye surgery. -even if it's just a blood draw, at least he doesn't have to be awake for it.
Our days and weeks are usually pretty packed and I apologize for any relationships outside of our immediate circles that have been neglected as a result. I am without a doubt that you all understand, but I do miss the more social relationships that have been pushed aside for now. It's a struggle a lot of days to get more that 20 minutes for Shelby and I to talk as adults! We are working on our relationship and try to find time for us as a couple (not just us as Mom & Dad), the last 6 months have not been easy in that regard... the added finacial strain of our medical bills, traveling and the hick-ups of daily life have easily compounded the stress, but we are doing what we can. -Maybe not all we can... with our luck, we probably should at least buy a lottery ticket every now and then! LOL!! We are still plugging along on many projects around the house, but it takes time... or should I say free time! -much of what we don't have. Slow and steady!! -the turtle wins the race! (we may have to adopt that as a mantra)
Ashton and Kiera are doing great and love Owen so much! Last week I watched Kiera walk over to Owen on the floor, stop and gave him a hug... for no reason, just because she wanted to. I could have cried. She is full of so much love for her brothers it is unbelievable. Ashton is done with PT at the school for the Summer. Ashton and I are both going to miss Mr. Brown and the kids over the Summer however, we will continue PT with Rachel at the Hospital two days a week over the Summer. He is making huge strides and becoming much more stable and closer to walking independantly.
Shelby and I are so proud of our children and all they have accomplished- It makes it very easy to count our blessings. As always, we want to thank all of you for your love, support and prayers. We couldn't do it or be all that we are without you!
Love & Hugs, Sarah & Shelby Fox
Thursday May 13, 2010
Owen had his first surgery on Monday! He looks different, but amazing! He did very well through the surgery and is mostly back to his normal happy self, with the exception of getting pretty frustrated with his "no-no's". -They are little arm splints that go over his elbow joint making it impossible for him to touch his mouth. He has to wear them for a couple of weeks when unsupervised. They made him pretty upset, but I try to take them off as much as possible when I can defend his face from his curious hands. He also cannot have his pacifier for 3 weeks- he's doing pretty good going cold turkey, but I can certainly tell he misses it.
Things went fairly routine during surgery. They put tubes in his ears to help with drainage, as most kids with clefts have a harder time getting a good hard swallow to open up the little ear drains. It is mostly a proactive measure to hopefully avoid any bad ear infections going forward. -knock on wood... 3 kids and not one ear infection yet! His lip repair looks pretty good! It is a little hard to get the full picture yet, because he still has a little tape strip over the dissolvable stitches and swelling, but from what we can see- it's shaping up pretty nice! He will have a second surgery in a few months to repair his hard/soft palate (roof of his mouth) and one more a few months after that to 'touch up' his deep wrinkle (the beginnings of a bilateral cleft lip on his left side) and any other imperfections from the first surgery. His cleft was exceptionally wide, so we expect there will be some touch-up work to do as things relax and heal. Again, we were fortunate enough to have Grandma and Grandpa Fox watch Ashton and Kiera while we stayed overnight with Owen. They are the best! Shelby and I both went with for the surgery. The appointments and surgery dates are quickly eating up Shelby’s vacation time. We are using some family medical leave days, but they are unpaid. Hopefully we’ll get a chance to use just a couple of his vacation days for a real kind of vacation someday. :-)
Life is defiantly more hectic than normal- but I don't think we really have a normal anyway! With Owen's rigorous regular med schedule and the post operation extra meds and cares it's taking a lot of work. It's all worth it and Ashton and Kiera have been angels about things. They are the best kids ever! Ashton is continuing to make progress in Physical Therapy and frequently walks just holding on to one of our hands now! He and Owen both started daily injections of Growth Hormone last week- here's hoping it will help Ashton build the muscles he needs and help Owen continue on a normal gross motor development path. Kiera is still my spitfire and saint. She has a heart of gold, but can sass with the best of them.
I guess that is most of the update for now. We sincerely want to thank each and every one of you for all of the prayers and wishes you have sent our way, we are blessed to have such a great circle of family and friends. Thank You!
Love, Sarah & Shelby
Thursday April 15, 2010
I just want to give everyone an update of how things are going at the Fox house! Since my last entry we have found out that Owen appears to have a non-functioning pituitary. Originaly we thought that it was working a little, but the latest bloodwork has shown us otherwise. Even though the malformation is identical to Ashton's it seems to be manifesting differently. We are thankful that modern science has given us the ability to monitor and replace everything he needs. He is going to grow and develope normally, but will be dependant on mendications for most of his life. He currently takes thyroid meds, cortisol meds, and testosterone injections 1x a month for the next few months and will be on growth hormone injections soon. For the last month I have been constantly on the phone with Mayo and Children's to get the growth hormone approval process through insurance for both of our boys (Ashton's pituitary is partially working, but he is growth hormone deficient). It's been a nightmare. I can't believe how complicated and sticky the whole process can be. I have spent hours on the phone... It baffles me how insurance can drag thier feet on the approval process for medications that are deemed medically necessary to the quality of life of the individual. It makes me sick.
We are still waiting on some genetic testing for a specific gene issue.... we hope to have some results in the next few weeks, but we're not banking on the results giving us too much info. Our boys are pretty unique according to our geneticists and might not share too much in common with the rest of the worlds population! The particular gene issue they are looking at now only has 7 documented cases since 1978. :-/ It really doesn't matter to us in the long run. God has a plan.
Last week Owen had a swallow study and feeding clinic. He passed for 'thinned liquids' ...HOORAY!! That means regular formula! With the help of the speech therapists we have found a bottle that he does pretty well with! Yup, that's right.. Owen is finally able to start taking some of his formula by bottle!! He is able to drink between 1/2 and 1 oz of formula over the course of 15 to 20 minutes from the bottle before he gets tuckered out, but it's amazing to be able to feed him like a regular baby and do something for him that he enjoys... not just 'hook him up'! He works so hard and really does enjoy his bottle, but we still need the g-tube to supplement what he is not able to get by mouth.
Owen also had his surgical g-tube replaced last week with a 'mickey button' -it's more of a plug in than an extention cord. His surgical tube was about 9" long and had to be fished through all of his outfits. Now he has a little button about the size of a nickel on his belly that we plug into when he needs to be fed. He is overall doing very well. He is laughing outloud and smiling a lot now! It makes me feel better knowing that he is enjoying his life and not upset about all of the 'work' things we have to do for him everyday. He's got so much to be frustrated and cranky about, but still manages a smile and laugh for me everyday. I love his attitude! <3
We are still making weekly trips to St. Croix Falls to Owen's orthodontist. She has him fitted with what looks like baby dentures. Every week we get them adjusted and the denture/appliance piece helps to pull his soft gum tissues back together and is prepping them for the best surgical outcome. It's been amazing so far! Dr. Cermin is a miracle worker! -she is a pioneer in her field... VERY few cleft babies in the country have the oportunity to get this special appliance. We are very fortunate that she is located so close to our home. When he was born I could probably fit my the tip of my index finger through the gap in front of his gums, now in just a couple of months with weekly adjustments I can barley get my pinky through the gap! It's a blessing and it helps him use his bottle much more effectivly right now!
We have scheduled his lip repair for May 10th! -less than a month away! It seems surreal that we are almost there. I will miss his HUGE smile when his lip is put back together. I know the cleft is still a shocker for the people that haven't met Owen yet, the appliance and tape greatly improve his outward apperance... but I have to be honest and say that I don't see it anymore. I know it's there, but I can see that he's beautiful just the way God made him too.
Ashton and Kiera are wonderful. Ashton can have his sassy 3 year old outburst now and then, but he's a real treat! He's so darn smart and funny! He just has this charisma that pulls you in. He's doing great in physical therapy and is accomplishing more physically every week. Kiera is such a little lady. She loves all girly things.... and all on her own! She loves her hair done, necklaces and pretty clothes. She's the sweetest. She's also given up her bottles- Kiera the sippy cup queen! Without a fuss she gave them up one day and that was it! She's also learning more and more every day. She counted to 10 with Nikki Fox tonight! I can't believe how smart she is too!
Shelby and I are doing great as well! We are always busy, but try to squeeze in a few minutes a week to relax and talk to eachother like adults :-) I'd be lying if I said life was always sunshine and rainbows, but there aren't too many rain clouds either. We keep an upbeat attitude about everything... We are both pulling on the same end of the rope- we look forward to when we don't have to pull so hard and we can give are arms a break!
That's probably more than enough for tonight. Thanks everyone for keeping us in your prayers! God's listening!
Love, Sarah and Shelby
Thursday Feb 25, 2010
Hi Everyone! Owen's almost 2 months old already and has been home for nearly a month! I just thought I would put up an update on how the Fox family is doing with our new addition at home. It's been kind of a ratrace for most of the month, however we are enjoying all being under the same roof!
Ashton and Kiera very much love thier new little brother and frequently share toys, talk to him and comfort him when he is upset. They are both such helpers. Ashton just turned 3 and is as quirky and goofy as ever- getting smarter by the day and expanding his communication skills by leaps and bounds! His mobility is improving and he is gaining the muscle strength and confidence he needs to be more independant. He has physical therapy at the school 2 days a week now in the special needs room and really enjoys it! He loves his physical therapist (Rachel) , Mr. Brown (special needs teacher) and the special needs kids that he interacts with. We opted out of the clinical setting for the special needs room at the cumberland middle school- Thank you Mr. Brown for letting us do this and for participating in our experiment! The special needs room has more equipment better suited for his small size and it is really helping his mobility and confidence. The students with extreme special needs are a wonderful inspiration for us and great motivators for Asthon. He enjoys interacting with them during his physical therapy sessions- he has his own cheering section. It's really sweet.
Kiera is doing really great. She is such a 'big sister' to both Ashton and Owen and frequently helps them both. Her vocabulary and skills are just exploding! I can't believe the things she is begining to say. She's so beautiful and a real sweetheart, but boy can she be a sassy pants too! She keeps me on my toes every second! She climbs, pulls up, runs and hides and gets into everything. If it's not nailed down or out of her reach -it's hers. Luckily she has the smarts and sense of responsibility to bring me anything 'yucky' she finds.
Owen has appointments every week to have his orthodondic palate piece adjusted to help move his gums/tissues back together to better prepare him for his surgeries. His orthodontist has a saying for kiddos like Owen: "some assembly required." Everything is in the package, just needs to be put together in the right places to look like the picture on the box. -we really like the lighthearted humor! She is very happy with how things are coming together -he looks so much better with his orthodontic palate piece in.. it give him full upper gums. His ortho Dr. added in a little nose bud (little push piece) to the top of his palate piece that is helping to help re-shape the nose structures. -all inpreperation for his lip surgery on May 3! This surgery will repair his lip and bit of nose that is open. He will probably have a touch-up cosmetic surgery later to smooth out any wrinkles, but the plastic surgeon is expecting beautiful results from the first surgery alone.
We are getting pretty use to his eating schedule and medication schedules. I have set alarms on my cell phone to alert me when it is time for his meds or 'bottle'. Instead of making bottles, we fill a bag and 'hook em' up' -he doesn't seem to mind and is getting the oral stimulation he needs from his pacifier. He loves his pacifier. He as trouble keeping it in and we often have to kind of wedge it in with clever placement of a blanket or his fist.
He's had a few follow-up appointments with the ear, nose & throat specialist -we established he will have tubes put in his ears when he has his lip surgery. They will help to drain the fluid that is getting blocked up by his inability to get a good swallow and 'un plug' his ears. The tubes will surely help with that and avoid ear infections going forward. We have scheduled the switch over to a button for his feeding tube. Right now he has the surgical style tube -kinda big and cumbersome. In april he will be swapped over to a 'button' that is flush with the skin and is more of plug in, than an extention cord. :-)
Genetic testing is ongoing. They took Shelby's and my blood to see if they can find any relation/glitches in our DNA that might help us solve the Ashton/Owen mystery. Since Asthon and Owen share the nearly identical pituitary hypoplasia- they are pretty certain it's genetic. Just trying to pinpoint where the glitch is so we might have a clearer long term picture. Like I've said before, the results probably won't be earthshattering or change the immediate future/treatment for either of them, but it might help us plan further ahead into the future.
I have contacted Ashton's specialists at the Mayo clinic and have informed them of Owen's birth and similar 'quirks'. We will be visiting Mayo with Ashton on March 10/11th. We are insistant, now more than ever that Ashton begin growth hormone therapy. It is obvious with Owen also sharing the same pituitary defect and having endocrine issues that Asthon's defficiency is without a douby pituitary related and not an affect of any other environmental factors.
With everything going on with the kiddos, Shelby and I are still finding time to enjoy the things we like and are very blessed to have the family and friends to help us out on occasion too! I really can't tell you how much we appreciate and how greatful we really are for everyone that has extended well wishes, offered to help or has helped us out. We are blessed. Thank You All!
I guess that is it for the moment. We'll talk to you all soon! God Bless, Shelby and Sarah
Sunday January 31, 2010
Well- as most of you know Owen was discharged from Children's Hospital, St. Paul on Tuesday morning!! We had a 'learning day' on Monday. We learned about his medications, dosages and times, we got some more litrature, filled perscriptions and met with our geneticist and endochronologist.
Owen's geneticist has been collaborating with Ashton's geneticist at Mayo in Rochester to see if the genetic dot-to-dot can be finished, however it looks like there is still some work to do. Niether senior geneticist (20+ years for both of them) has seen a case like Ashton or Owen. They are certain that thier nearly identical pituitary hypoplaisa (pituitary in 2 pieces) is the result of a recessive X gene. -meaning both Shelby and I are carriers of some genetic quirk that is passed on to our boys. ...they are just trying to find out what gene within the chromosomes that is.
We are waiting on the genome hybridization array for Owen to see if the concentrations of the study can highlight an area that may have been missed in Ashton's array- but those results will take some time yet. Really, like I said before: the information will be good to have, but the results will probably not give us a clear view for the future. We will replace hormones that thier pituitary's are lacking as needed, but niether geneticist has seen anyone like our little guys and that doesn't give us a lot of 'history' if they can isolate the gene. We'll just play it as it goes. :-)
Our endochronologist met with us and ordered some more tests to make sure Owen's other hormone levels stay within his physiological ranges.
After discharge we scooted over to Gillete Specialty Clinic within Regions Hospital in St. Paul and had Owen fit for his palate appliance piece and a surgery consult. He was so good for everything!! He doesn't seem to mind his 'baby dentures' and it already makes a huge difference in the way he looks! We'll be going to St. Croix Falls- to thier primary orthodontic clinic every week for fittings and adjustments until his surgery in a few months. While we were at Gillete Hospital, Owen also had a CT scan of his head to check the bone growth and fushions. -results aren't in yet, but we are hopeful that they are normal as we haven't got any phonecalls with immediate concern!
And now- We're Home!! It's been a whirlwind week with all of the kids under one roof. We are very busy with Owen's feeding and med schedule, but it feels more 'normal' everyday. He's being a real trooper and starting to assimilate to his new surroundings and family. Ashton absolutley is in love with 'Baby Owen'! He had a very long kid conversation with Owen as soon as he set eyes on him and consoles him when he gets upset.... it's really sweet! Kiera is doing great with Owen as well! She often brings him a little toy and sets it next to him and already says his name! -they both have been great about not touching Owen's tube (his feeding tube) ...they both have made the transition much easier.
Shelby and I are doing pretty good. It's a lot of adjustments to 3 kids, and not to mention the extra special needs that come along with Owen. We are starting to feel more and more confident with all the quirks, med/feeding schedule and other things to remember -once we get comfortable with things we have to work on training others in the hopes we can escape the house for a few hours at a time. Grandpa Al has already volunteered and is eager to get trained on Owen's feeding pump- what a guy! We are a little swamped with follow-up appointments and meetings for the next few months, but we were prepared for that and know it's going to be a long journey ahead. Thank God we have eachother! I guess that is the 'gist' of it for now!
We can't thank all of you enough for your support and prayers to get us home. We are so incredibly blessed and thankful!
We'll talk to you soon! ~Sarah & Shelby
Saturday January 23, 2010
Yesterday we traveled to St. Paul for 'at home' classes. We had an infant CPR class and learned how to better position Owen for when he is sleeping for his GI tube feedings. We also learned how to administer emergency hydrocortizone injections (as we have found that he is cortizone deficient as a result of his pituitary malformation) -he will be on daily medication for this, however if he ever has a traumatic illness or injury he will need an emergency injection to help his body deal with the extra stress. Our last training was for his feeding pump and supplies for feeding him via GI tube. The nurses have been very helpful in preparing us for life at home and showing us how to give him his medications via GI tube.
So, It looks like Tuesday is our take-home day -his one month birthday!! We will arrive to Children's early in the morning and get all of his discharge work done then we will visit Gillett Hospital for his appliance form/fitting on the way HOME! We are really excited and anxious at the same time. Our 'at home' coordinator has given us a full binder of information and a calendar packed with follow-up appointments. While we can't wait for his discharge, we know that life will still be hectic and full of new adventures in the months ahead as we settle into our new normal. But like Dorothy says, 'there's no place like home!'
Talk to you all soon! Sarah & Shelby Fox
Saturday January 16, 2010
Owen had surgery for his GI tube yesterday (feeding tube) and everything went as scheduled and so far so good! They clamped off the drainage last night and he is tolerating that very well. They have reduced his pain meds down to just tylenol and he doesn't seem to mind that at all either- such a tough little man! We just talked to the lead neonatologist a few minutes ago and they will start feeding him via GI tube today starting at 3cc and hour then up to 5cc an hour for today... kind of a 'whimpy' dose to start with, but we don't want to push him to hard while he is still recovering :-) They will then slowley eek up the amounts in hopes that he will build his tolerance up so he can have larger feedings less often and not have to have these tiny continuous feedings all day. -he's almost 3 weeks old and really hasn't had to use his stomach yet... so just like a newborn we're going to start out little by little. We are hoping that this week his feedings will continue to improve and that the speech people will be in to work with him on bottle feeding. Like I said before; he won't be able to get all of his calories via bottle and that is why he has a GI tube, but will be able to take some formula by mouth to make him happier.
Owen's geneticists at Children's here and Ashton's geneticist at Mayo are now collaberating on the possible biological/DNA links between Owen and Ashton. They have orderd a DNA hybridization study on Owen's DNA to compare to Ashtons (Ashton has already had this study, so 1/2 the results are in). -much of these results will not be life changing, but will help us to better understand and possibly classify any syndrome/symptoms that might be unique to each one or similarities that they might share.
We are still waiting on IGF1 results (human growth hormone.. what Ashton is deficient in) test results to come back. It's possible that Owen may also have this same defficiency. Owen is receiving daily tyroid medication for hypothyroidism (body not producing any thyroid) and will likely have to for the rest of his life, however with daily treatment.. a little pill- there will be no long term issues. They are weaning down his hydrocortizone levels to the bodys natural production levels so they can test to see if his own body is producing the proper amounts. -really- most of the quirks we are still dealing with lie in the hormone department... Thank you God and Science for giving us the ability to replace what his body does not make naturally without any adverse side effects. Science is a blessing.
It was so great to walk in his room this morning and see him without any tubes going into his mouth or nose! - he looks so much happier, and we know he is! The one attending nurse said Owen smiled at her a couple of nights ago... another little ladies man in the Fox house!! The nurse is also moving him to a crib today too.. she said she'll put a mobile in it for him to look at too!! The plastic surgury crew should be here this week to fit him for his appliance piece for his upper palate cleft. It's really going to help him a lot until he can have his surgery. Life is getting much better for our littlest man, we just have a few more quirks to work through to get him home- but we are taking 'baby steps' in the right direction everyday.
Thanks for keeping us in your thoughts and prayers. <3 Shelby and Sarah
Tuesday January 12, 2010
Hi everyone, we are in St. Paul today with Owen and Papa Al is home with the little kiddos. The day is going pretty good. We are learing more and can see positive improvements everyday- Owen is a real tough guy. He had his MRI yesterday...Owen's initial bloodwork showed undetectable levels of TSH and Tyroid hormone- pointing toward a possible pituitary problem. Through the MRI we have confirmed that Owen and Ashton have more in common than thier handsome looks and dramatic entrance into the world! <3
As with Ashton, the MRI findings have shown us that Owen's pituitary glad has a malformation. It appears that it is producing the hormones it needs to with the exception of thyroid hormone and possibility growth hormone (just like Asthon). We are waiting on the (IGF1) growth hormone test results. -so far we have an official diagnosis of Hypothyroidism... the upside is- this is completly treatable with a tiny pill taken daily! They are going to continue to wean him down off of hydrocortizone (another pituitary regulated hormone) to be sure that his body is producing an adequate supply over the next week. All other areas on his MRI appear normal and seem to be functioning normally!
We had a very productive talk with an endochronologist this morning following the MRI results and are very comfortable with the game plan at this point. We learned a lot about what is going on with Owen as well as some of the very clear similarities to older brother Ashton. It seems they may be a real matched set! LOL :-) So far so good... looks like things are going to be somewhat easily tuned and not require any further testing (other than bloodwork).
Today Owen no longer has a breathing tube! Yippee!! and doing great with resperating on his own! His xrays show that the phnemonia is clearing from his lungs and getting better everyday. -he is currenlty on day 7 of the 10 day antibiotic treatment. He had another echo-cardiogram yesterday and everything appeared normal... the small hole in his heart is getting smaller every day and looks as though it will close on it's own just fine. He is scheduled to start formula feedings via feeding tube from his mouth to belly- if all goes well (him not getting any in his lungs) they will very likely schedule him for his GI tube (feeding tube) on Friday. -but we'll play that by ear.
I guess that is all for now- probably enough anyway ;-) Thanks for keeping us in your thoughts and prayers. We still need them!
Sarah & Shelby Fox
Saturday January 9, 2010
We are here in St. Paul again today and heading home this afternoon to be with Asthon and Kiera... we miss them like crazy when we are away too! It's a hard situation leaving them, but we always know that we are leaving them with people they love and have a lot of fun with!
Owen's respritory distress continued to get worse over the course of the week. The aspirations (fluid/formula that was getting into his lungs) began to take a toll on his little bitty body. They performed additional chest x-rays on Wednesday. When the x-rays were reviewed they could see that his lungs were 'cloudier' and in the early stages of phnemonia. His blood pressure in his lungs was high (showing that his lungs were stressed from the infection) and his cardiac bloodpressure was low from his lungs not being able to deliver enough oxygen to the rest of his body. -this being said- The Doctors had a breathing tube put in that supplied him a little extra 'push' of air, but also some nitous oxide to alleviate the pressure and stress on his heart and lungs. They also began a 10 day antibiotic treatment to nip the infection in the butt before it got out of hand. They discontinued his feeding tube from his mouth to his belly for now, until they get his lung stuff under control and are giving him all the fluids he needs via IV at the moment.
The last couple of days he looks so much more rested and comfortable!! We started reading 'The Wizard of Oz' to him during the down time.... did you know Dorothy's slippers are SILVER in the book??!! Not Red!
The last few days we can really see that he isn't trying so hard to breath and you can see that he is feeling better and getting the phnemonia out of his lungs. They are also performing a multitude of additional tests on his hormone levels and gland secreations to make sure that all other functions are normal. -hopefully within the next two days he can have his breathing tube removed and be back to breathing room air.
His palate impressions for his appliance have been delayed until he is more stable, but in the big picture we're not looking at any huge delays at this point. ...just a little longer. "be patient mommy" -that is what Ashton tells us all the time. -guess we'll take his advice on this one! :-)
We'll continue to keep you all posted. We are very thankful and greatful for each of you and for the positive thoughts, prayers and comments you have sent our way! *Hugs!*
Sarah & Shelby
Tuesday January 5, 2010
Owen is 1 week old today!! Again, I can't thank you all enough for the prayers, kind words and extending us your support! We are very greatful to all of you!! The gameplan is perpetually changing and I though you would like to hear how things are going at the moment.
Yesterday Owen had a swallow study that showed he is aspirating regular formula (getting some in his lungs)- they tried a gel thickened formula resulting in him not aspirating as much, but still aspirating. The gel thickened formula and special nipple worked very well for bottle feeding, however the speech techs are not convinced that he has the stamina to intake the minimum caloric intake required for a baby of his size by bottle feeding alone. His cleft is making it difficult for him to create a good enough vacuum to finish a whole bottle without getting completly exhausted. His cleft is also allowing some of the formula to 'goop' up in the back of his throat making things doubly difficult for him and not at all helping with his oxygen saturation. Once he has the formula in his belly he is experiencing a stage 3 reflux ...refluxing all the way up to the back of his throat from his belly (that's kind of some normal baby stuff really!). For this reason they are keeping him on an incline when lying down. He has had a bit of labored breathing today and the Doctors put him on an antibiotic IV drip because he aspirated a some of the formula during the swallow study and his lung xrays are a little 'wet' looking. . -better to error on the safe side!
All factors considered we are electing to have a GI tube (little feeding tube to his belly) put in to help him along and be sure he is getting his nutritional needs met so he is strong and healthy enough for discharge, for home and for lip surgery in a couple of months. -we've been told that a GI tube would very likely be required during the healing period following the lip and palate surgeries as well.
We have found out, just like our other little ones he prefers to sleep on his belly! :-) He has been recieving some photo therapy for Jaundice the last couple of days, but is suppose to be 'out of the lights' tonight! He'll be so happy to be able to have his sunglasses off! He likes to pull and push them off a lot! He also had a chromosome test and those test results have shown that he has all pairs! His sugars have stabilized and no longer require monitoring.
He is really a very strong kiddo! -in all ways! He has been lifting his head and turning it from side to side when on his belly! He also has been kind of scooting around up and down his bed. He's really giving the nurses a run for thier money- they joke that they're not use to active full term babies around there!
They postponed his appliance fitting until next week- they really want to sort out his feeding/respitory issues before they irritate him more.
I guess that is the update for now! Things are taking a little longer than we originally expected, but we are being patient and giving Owen the time he needs to get better.
Talk to you all soon!
Sarah & Shelby
Sunday January 3, 2010
Just a quick note tonight. I know... it's nearly impossible to write a quick note- there's so much every day, but I will do my best to condense it down.
I went to St. Paul with Jen & Kali to visit Owen today! He got to sleep in a crib last night and the nurses told me he did really well. He was a little spit-uppish overnight, but they are continually increasing the amount of formula intake on his feedings and he's just working on keeping more in. ...kinda normal baby stuff really! ;-) I was a bit sad to see when I got there that he was back in his isolet (little incubator) getting 'light therapy' for some jaundice. ...again, normal baby stuff, but I that meant I wouldn't get to hold him today.
His blood sugars were very good and they are decreasing his IV fluids as his sugars stay stable. This is GREAT news! Once his sugars are continously stable he will be able to be off of all IV fluids and that means they will remove the last IV line! woo hooo!! Overall he is doing pretty darn good! He's such a tough guy and so sweet! He rarley cries and when he does he is very easy to soothe. The are always commenting on what a good natured baby he is. So today we stayed for a few hours and held his hand and rubbed his belly and back. I gave him a quick fingertip kiss before I left and told him I would see him tomorrow.
Shelby and I are back in the afternoon tomorrow for his swallow study and Tuesday for his appliance fitting. ...we'll keep you posted. <3 Sarah
PS- Ashton and Kiera are doing wonderful with the disruption of thier normal day to day.. We are so incredibly lucky to have them handling everything so well! I can't wait until we can all be together as a family!
Saturday January 2, 2010
Hi Everyone,
First of all I want to say THANK YOU to all of our Family and Friends that have extended thier words of support and prayers to our family. We are really blessed to have such wonderful people in our lives, you all mean so much to us and we could not make it through such difficult times without you. I also want to say a special thank you to Al & Deb Fox for thier never ending generosity and love. They have been caring for Kiera and Ashton while Shelby and I are with Owen at Children's in St. Paul.
So- just a quick update on how Owen is doing. He is at Children's Hospital in St. Paul in the NICU unit. He is off nearly all of his IV fluids.. they are continuing to increase his formula intake at each feeding and once he is up to his minimum fluid intake via mouth he will be off all IV's!! This means he will be able to move from the isolet (little incubater type enclosure) to a crib! It will be so much easier to take him in/out and hold him when he is in a crib! Hopefully by Monday he will be in a crib!
On Monday he will have a swallow study to determine if there are any barriers (besides the cleft) that would prevent him from bottle feeding. This is a very important step- we have to have feeding issues resolved before Owen can come home! On Tuesday Owen will be fit for his appliance (a retainer type mouth piece) that will help him with bottle feeding and forming his soft tissues for surgery in a couple of months.
Jennie (my sister), Kali (my sister in law) and I are going to visit Owen in the morning. I'm not sure if there will be anything new to report tomorrow, but I will get a chance to hold my little sweetheart and that means more to me than any test result! -I'll try to post again after Tuesday... Shelby and I will be in St. Paul Monday and Tuesday for sure.
Hi Everyone,
I am sorry for the delay in annoucing Owen's birth- we have had a very busy few days! Owen Albert Fox was born on Dec 29 at 1:55pm weighing in at 8lbs 6oz. He has beautiful brown hair and we are not sure what color eyes yet (they are pretty grey right now)
-Owen's Story-
On Tuesday I went in for the scheduled induction. After being hooked up to all of the fetal monitors we quickly found out I was having some mild contractions on my own! Yippe! So to get things moving along, I was hooked up via IV to the pitocin and having regular contracions about 1 1/2 to 2 minute apart. Around noonish my water broke. Dr. Carlson came in quickly to check things out and we discovered there was some blood in the water (water should not have blood in it). That's when things started to fly! -an ultrasound tech was quickly called in to check on baby and the placenta ...everything looked good? Dr. Carlson made some calls to the specialists in the twin cities to find out how they would progress. After about 10-20 minutes we had 2 choices: be very cautios and let the labor progress naturally or opt for a C-section for the 'just in case' there is something more serious going on'. We made the decision to have the C-section. We felt it was the safest route for baby and myself.
Once the decision was made we had 20 minutes for prep and transport to the operating room. The team that got me prepped worked like NASCAR! Once the anystesiologist administered the pain meds they pulled a sheet up and went to work- 3 Doctors and 5 nurses scurried around with amazing speed. It was less than 8 minutes and Owen made his entrance into the world. It was pretty apparent from where I was lying that the focus quickly went to him. After 2 short cries his breathing efforts failed. Two of his Doctors and the anythesiologist worked to clear his lungs. After extracting 2 very full vials of bloody fluid the helicopter was called.
One Doctor and nurse in the haste worked to put me back together. All other hands on deck were with Owen. The team immediatly went into rescue mode and was performing CPR and put in rescue IV fluids. Owen was recessitated after a few minutes and breathing with the help of a ventilator. The source of the blood seemed to be a small lesion where the placenta had torn away from the uterus in the days prior to delivery. This is very important as, if there was a full seperation of the placenta Owen would not have made it.
The helicopter team arrived at the hospital. By that time the Cumberland Hospital team had him and myself in stable condition. Upon further exam we quickly realized that Owen has a Cleft Palat and Lip -with the aspiration of the bloody fluid and cleft they transported him to Children's Hospital of St. Paul to the NeoNatal Intensive Care Unit.
Shelby left shortly after the helicopter did to be with Owen and I was discharged less than 24 hours after my C-section (on very strict orders/husband supervision) to be with Owen. ...and that is where we are today.
Owen is doing very very well! He's a trooper!! A multitude of tests have been performed to look for any underlying damage/problems that could be lingering and all tests have come back negative. He so far has passed with flying colors. They will be removing some of his IV's today and as soon as we can get his feeding situation established we are much closer to going home. We talked with a plastic surgeon yesterday and they are more than very hopeful that his cleft palat and lip will be repaired before he is a year old. -we got to see some before and after pictures of other children with the same issues and the results are stunning! You would never know that they were born with a cleft palate/lip.
So in the coming days/months we know we will face some very unique challanges for our new little guy, but are amazingly blessed that he is with us and healthy. We want to thank all of you for your well wishes, prayers and concern. I'll try to keep you posted in the next few days or so, but my energy is on getting myself better and Owen home. :-)
Love,
Sarah & Shelby Fox
11.09.2009
GRRR....really frustrating news today! The bloodwork/tests that were sent overseas for Ashton's GH Gene in July were never sent! I have been callling Mayo every two weeks waiting for the results and finally today they figured out that the bloodwork was never sent! So.... more waiting! hmpf!
10.20.2009
Just a quick note: last week we had Ashton's fasting blood sugars taken. He went to the clinic 3 mornings in a row before breakfast or any food (not a happy guy!) Only 1 morning did he have a dangerously low glucose reading. Dr. Kumar (growth Dr. at Mayo) will interpret the results and get back to us.
I got in touch with the Cumberland early childhood program this week! Lots of paperwork and testing to do, but it looks like when Ashton turns 3 he will get to go to 'school' for a few hours a week. This program coupled with his physical therapy should get him on a steady track to greater independant mobility! *exciting!*
10.05.09
Hello Family and Friends,
We had another visit to the Mayo Clinic last Thursday. Ashton was scheduled for appointments with his neourologist, endochronologist, pediatric eye exam and with his geneticist. The day went rather well! Ashton was very well behaved all day and didn't get too worked up with the poking and proding! His neorologist is very happy with his progress- we are making steady gains dispite his mobility challanges. His speach and cognative abilities are up to par with other kids his age and we are working with a physical therapist at the Barron Mayo clinic extension to get his body up to speed.
The meeting with our endochronologist (growth doctor) revealed that Ashton has only made slight gains in height and weight. She is pleased with his developement and has opted to follow him for 5 more months before we begin any growth hormone treatments. At his age she has said to us there is no dire need to begin treatments as he won't lose any growth potential in the long run. She does have a mild concern that even if we start treatment we may not see any results as his body (for reasons unknown) might not respond to growth hormone. We are in agreement with her to wait a few more months and then prepare an action plan. Dr. Kumar has requested that we have a fasting blood sugar done at the clinic at home to check if immediate growth hormone replacement is necessary. We will have that done next week (it's just a finger prick on an empty stomach early in the morning..Yeah!)
Ashton's eye exam went wonderfully! The optomologists at the Mayo Clinic were amazing and Ashton sat so still and was so super cooperative I couldn't believe it! They were able to see some potential for long term vision problems, he is slightly nearsighted and has stigmatisms in both eyes. It doesn't seem to effect him very much at this stage, however does need to be monitored over the long term. We left the optomologist with an orange sucker and a very light perscription for glasses. We are waiting to talk to our family optomologist to get her opinion on getting glasses for such a light perscription.
The meeting with Ashton's geneticist went well also. We are still (3 months) waiting on the results for his growth gene that were sent to Europe. Dr. Ellison said it is common for these tests to take a longer amount of time to process. He said one more month of waiting at the most. We discussed other blood/dna type tests that can be easily performed in the future dependant on the results of the first test. The visit to genetics was primarily monitoring, however we have lots of faith in Dr. Ellison and his investigative abiliites.
So our search continues. We are reminded that Asthon is happy and healthy, just small and has some mobility challanges. We are confident these are adversities that Ashton's great sense of humor and personality will have no problem overcoming.
07.28.2009
Hi Family & Friends,
Our visit to Mayo last week didn't go quite as we expected.... Ashton appears to have grown just under 3cm and gained a few ounces of a pound. This being said Dr. Kumar (growth dr) does not want to start him on Growth Hormone until he is able to gain more weight. I'm not sure what she expected to happen over the last 3 months??- he hasn't gained much over a pound in the last year dispite a high calorie diet- whole milk w/carnation instant breakfast in it, cheeses, meats, snacks and more. He is a light eater, but is getting enough calories. Ugh- all of his blood work shows he is getting the proper nutrition, he just can't seem to get bigger or gain weight. It's really frustrating. Dr. Kumar believes that Growth Hormone injections will do nothing for him if he can't gain weight to balance the length he will gain from the injections. She would like to wait another 4-6 months to monitor any changes
So we are still searching for the ultimate answer to: Why is Ashton so small? The great news is that we met with Ashton's neourologist and she is very pleased with his progress in his cognative/social abilities! His comprehension and brain functions are still a bit ahead for his age- which is wonderful news!
Lastly we had an appointment with our Geneticist (Dr. Ellison) -we really value his views and respect him as a Dr. very much. After a quick chat about the genetic possibilities of having another child with the same quirk (pretty unlikely) we discussed a very very high tech test to see if Ashtons Growth Hormone Gene Receptors are working properly and telling his body to make/not make Growth Hormone. It is a possibility that his pituitary, however malformed it is, has the ability to produce Growth Hormone. His Gene Receptors in his DNA may be telling it not to make any? -A bit space-age for people without a neourology/genetics/astrophysics degree! Dr. Ellison is not satisfied not having a real reason for Ashtons small size, but is very clear that he will not turn Asthon into a lab-rat to experiment with. He wants to find out what is going on and then decide what actions we should take. He has also been very clear in telling us that anything we find beyond this point is astronomically rare, but he's confident that we'll get there and have the comfort of knowing.
So Dr. Ellison requested a bit of Ashton's blood be sent to the only lab in the world that tests the Growth Hormone Receptor Gene be submitted- it is actually going to Germany! Results should be ready in a month or so. The best part is they have some of Ashton's extra blood cryogenically frozen, so no need to stick him again!
We are remaining optomistic that we will someday find an answer to explain his tiny size. It's true that frustration and helplessness does get the better of us somedays and we feel like the only ones in the world who can really understand the emotional toll and stress of all kinds this puts on us, but then we look at our handsome little comedian and know that we wouldn't trade him for anything. We take a lot of comfort in the fact that his cognative, social and comprehension is uneffected by whatever is going on with his body. His personality is easily twice the size of him! He is such a comedian- as one of the interns in the genetics office told us 'it's obvious he is not missing the humor gene'...as he is siging songs into a magnadoodle pen ;-)
We thank you all for keeping us in your prayers and supporting us as we continue on our search. Love you all very much,
Shelby & Sarah
7.23.2009
Hey Everyone,
We are off to the Mayo Clinic for Ashton's scheduled visit tomorrow morning right away. Our first visit is with the Endochronologist (growth Dr) and the second visit of the day is with the Neourologist (brain/developement Dr.).
We are hoping to start Growth Hormones tomorrow. In 3 months of blood draws Ashton's blood has had 'undetectable levels' of growth hormone in it. At this point not giving him growth hormone would be like not giving a diabetic insulin- his body needs growth hormone to grow and get stronger.
Please keep us in your thoughts and prayers! We'll post info on how the visit went this weekend in the 'Recent News' area.
♥ Hugs ♥
Shelby and Sarah
7.15.2009
Ashton had his final blood draw before we have to go to Mayo on the 24th. We are looking forward to only having blood draws once every three months now! Ashton does great with the nurses and techs until he sees the vials- then the jig is up. Luckily Chris in the Lab at Cumberland Clinic gets him on the first poke every time and our superhero recovers quickly and didn't even want a bandaid! He was much happier with the 2 'Cars Movie' stickers the tech gave him!
Ashton's progress continues to accelerate. He is on his feet more and trying to keep up with Kiera! They are eachothers motivation these days! They both are such blessings and we are thankful to have such amazing babies! Baby #3 is looking happy and healthy and set for December 28, 2009!
Ashton's appointment on the 24th is next week -then off to Mayo we go! I am sure we'll have much more info to share then!
7.7.2009
Just wanted to give everyone a quick update! Ashton's physical therapy is going great and he loves Becky (his therapist). She pushes him hard and really works with him to help him build the skills/muscles he needs to pull up better, stand stronger and eventually walk. We are really encouraged by his progress and see improvement everyday. He is now consistently getting to his feet with the help of furniture and is able to stay in a standing position for longer periods of time. We are really proud of him! Kiera is helping a lot to push him along too, as she is cruising on furniture and getting closer to taking her first steps everday!
We go to Mayo Clinic on July 24, 2009 to hopefully begin his growth hormone therapy. His blood work up to this point has not shown any sign on growth hormone in his blood. We are hopeful that the replacement therapies will get him the boost he needs to catch up.
That's it for now! I'll keep you all posted as we begin his therapies! ♥ The Fox's
05.13.2009
Ashton goes for his second physical therapy appointment on Friday in Barron. He took to his therapist really well and we are doing some new things to encourage his walking and gross motor skills. He has even walked behind his walker a couple times on his own! Yippee!
The Birth to 3 program has proven to be pretty much a joke. The Rep came out to the house twice -once for a pile of paperwork and once to evaluate Ashton's skills. She told us that his skills (with the exception of gross motor are on target) and that since they are still tied up in contract negotiations with the home visiting physical therapists that there are no services avaialble to him -and if/when they become abvailable there is a wait list.
So we have elected to abandon our efforts of working with them -the Rep kept using the term: "if it is too much of a hassle" then follow it with things we could do on our own independant of thier program. She wasn't a real good sales person for her own program! I guess maybe they work more with kids with developemental delays verses gross motor delays with normal inteligence. So we are working with the Barron Luther Middleford Mayo Northland to do some outpatient therapy. -just sucks cause our deductible is maxed again this year and it resets in June. ahg! Oh well.... as long as you pay a little to all the medical facilities you owe, they can't come after you and it doesn't wreck your credit score. It's worth it! We have hopefully found a non-profit funding souce that helps pay some of the co-pays and deductibles for children with ongoing medical needs. We have contacted them- they are out of the office until the 28th of May, but we got our name in there! Lets hope! ♥ Love you all! Keep us in your prayers!
04.28.2009
Just a quick update to let you all know that Ashton had a blood draw last week that was sent to Mayo. All hormone levels (with the exception of Growth Hormone) were normal! Yeah! So we are gaining more data to support the possibility that what little pituitary gland is there, is working pretty well for him right now. Growth Hormone levels continue to be 'undetectable' in his blood. We will continue to monitor his hormone levels now and again until our July appointment at Mayo where we will then establish what hormone replacement therapies will be needed.
We also had a meeting with WI Birth to 3 program today -with a diagnosis we are able to qualify him for physical therapy programs offered in our area. Our case worker was pretty helpful, but it is painfully obvious that the system is tied up with a lot of bureaucracy. The paper work and evaluation process is a nightmare and we were told that the physical therapy services are not avaialble through them at the moment as they are in contract negotiations with the pediatric physical therapists -and the system is backed up. UGH. We have made an appointment for Thursday with the Mayo clinic extention in Barron for a Pediatric Physical Therapy Evaluation with thier pediatric therapist (one of 2 in the area). So -here's to progress! Slow and steady wins the race!
Thanks for the prayers and supportive messages!
04.11.2009
One Wednesday we again went to the Mayo Clinic in Rochester for a follow-up appointment to review the results of Asthon's biopsy and MRI.
We finally had a significant breakthrough and were given some insight as to what is going on with Ashton. The muscle biopsy came back normal, however during the review of the MRI slides the specialists were able to see that a significant portion of Ashton's pituitary gland is missing. A typical pituitary gland looks like a kidney bean implanted smack dab in the middle of your head with an anterior and a postierior piece joined together to give it a bean shape. Ashon's pituitary is two seperate pieces. One piece is (the anterior portion) is the size of a pea and the other piece (the postirior) is nearly absent, but there is a small piece there and it's shaped like a almond sliver. This condition is extremly rare and the reason why it was not suspected until this point.
The pituitary gland is called the 'master gland' as it produces nearly all of the hormones our bodies rely on to work properly. If you google 'pituitary gland' you can learn a lot about it! :-) Luckily for us, what little there is of Ashton's pituitary gland, it is working to produce nearly all of the hormones his body needs, with the expeciton of growth hormone. The level was 'undetectable' in his blood!
This is a major finding for us! The lack of growth hormone coupled with the un-natural shape of his pituitary gives us the most likely reason for his tiny size. (he is the size of a 1 year old) This too could certainly be a reason for his muscle tone problems, as growth hormone regulates your muscle to fat ratio.
It is great news to know that what his pituitary gland does not produce can be replaced/fixed by bio-identical hormones that are scientifically engineered to be exactly what his own body would produce. We are now in the process of establishing his 'baseline' of hormone output so we can accuratly judge how much replacement hormones he will need. We have also been comforted by the fact that if/when we start giving him growth hormone to replace what his body is not producing -it will only do what his body is pre-determined by his DNA to do. It won't make him a giant, it won't make him un-naturally large, it won't make him anybody but what God intended him to be. Replacement hormones will work with his body to reach his growth potential, not freakishly large or anything -just what he is suppose to be.
So this new news has been truly empowering! We now feel like we have control over what is going on and are learning more everyday. We will visit the Mayo clinic again in July to do bloodwork and to likely begin the growth hormone therapies. We will continue to monitor his progress and have also begun the process of getting Ashton some physical therapy to help him get his muscles up to par faster.
So that's it for now... here's hoping! ♥ Shelby & Sarah
04.01.09
Hey All~ Yesterday we were in Rochester again for Ashtons scheduled appointment. Ashton had his MRI and Muscle Biopsy.... so far so good! He is such a brave little boy! He got to take his cookie monster in the MRI and Operating room with him! The nurses even gave cookie monster a wristband to wear! The procedures took about 3 hours to complete and Ashton came out of the anystesia very well again this time! -just a litte groggy and gassy from the breathing tube! peew! He will have a scar on the top of his left thigh were they took out the piece of muscle for biopsy (1cm x 1cm) -pretty big for such a little man! If you figure he is 1/6 the size of an average person -that would be like taking out 6 squared centimeters out of an adult! Ouchee!
But it hasn't slowed him down at all! He is still very active and crawling/climbing around getting into everyting. We are giving him tylenol & ibuprofen in alternating doses to make sure he doesn't have any pain and reduce the swelling.
So, we are closer than ever to an answer for our little superhero. The MRI and Biopsy were the last tests on the list and the specialists should now have a complete inside & outside work-up to review and give us a final diagnosis.
We are keeping in good spirits and are enjoying every minute with our children! Thanks everyone for your thoughts and prayers! ♥ The Fox's
03.23.09
ALL chromosome, DNA and genetic abnormality tests have come back normal!
03.12.09
ALL gastrointestinal test results have come back normal!
03.09.09
Hey Family & Friends,
Today went well! Ashton was anestitized for his EMG and his endoscope -and so far all tests results appear to be normal (with exception of the low growth hormone screening). He did very well with the sedation, however it took ALOT to knock out -the initial oral dose didn't fully knock him out like most kids! He was still pretty darn alert and talkative with everyone! They followed up with an IV to finally get him out! The nurses were a little surprised such a little guy took so much! I think I am going to self diagnos him with 'super hero syndrome' -you just can't get the kid down -in any sense of the word! He is amazing! Ashton was again in good spirits and came out groggy, but quickly recovered and was eating/drinking/playing in about an hour!
Even though the news is good so far, it is a double edged sword. We don't have an answer yet and therefor we have a couple more tests before he has been fully explored inside/out! We are still digging and trying to get to the root of why his gross motor skills and physical size are more at a 1 year level. Thankfully he has not completly stalled out, just not progressing nearly as fast as his peers. On a high note: this week he is more consistently pulling up to stand with the support of furniture now!
We met with our neorologist following the procedure and she again assured us that she is confident that his brain/cognative abilities are normal -and infact advanced for his age. She belives that his muscle problem would appear worse if he wasn't so smart -his brain is compensating for what his body is unable to do. ex: his fine motor skills are awsome! -it takes more brain power to control the fine motor skills than muscle power.
So on March 30/31st we have scheduled an MRI to check his pituitary gland (growth hormone regulator) and to have a hard mucle biopsy (from his larger leg mucle). The leading specialist in the world of children's muscle disorders works at Mayo and has agreed to review the biopsy slides to check for underlying disorders.
So the good news is -we asked our neurologist: 'if these two tests are normal, what's left?' and she answered: 'growing older'
It was the perfect answer and what we pray for! We are nearing the end of the mystery will have our difinitive answer soon! Thanks everyone for your thoughts and prayers! We can't tell you all enough how much your support and friendship mean to us!
03.05.09
Hello again everyone,
Thanks for the thoughts & prayers! -and a special thank you to Al & Deb (aka grandpa & grandma) for watching over Kiera as we travel with Ashton! -they are a real blessing to us! We had another appointment at Mayo in Rochester yesterday. ....so far so good -we guess? We have not had any test results give us any earth shattering information or a profound case for any specific disorder/syndrome/disease. While it is frustrating not having a difinitive answer yet, it is relief to have ruled out many very serious problems.
Yesterday we again visited with our Endochronologist who gave us the results of the previous visit. His vitamin levels are normal as well as all of his organ functions (that can be indicated by bloodwork) We did confirm that he does have a lower than normal level of growth hormone in his body -we somewhat suspected this because of his size! ;-) We are still waiting on the results of his bone age testing.
We then moved on to visit a neurologist, who was very infomative and playful with Ashton! -she had a puppet!! -One of Ashtons favorite toys! She was very impressed by his cognative/social/comprehension developent as well as by his fine motor skills -she is confident that he does not have any brain developement related issues and told us that he is actually quite advanced cognativly for his age! She is concerned however with his gross motor delay and muscle developement. It appears that his brain, muscles and nerves are all talking, but his muscles are not nessesarliy able to do everything for him due to lack of tone (hypotonia). It appears that the muscles may not be building propery possibly due to a missing protien compound. She has ordered a EMG to rule out about 50% of mucle disorders -he had a normal EMG at 12 months, but much changes in 1 year in children. Under anystesia they stimulate the muscles with electricity through fine fibers inserted into the muscles and measure the muscle responses. It isnt' painful, but requires him to be very very still.
From the neurologists office we were shuffled to a gastroenterologist who assesed his diet history as well as ordered a barium xray of his gastrointestinal tract and a endoscope (to look with a camera down his intestinal tract) to make sure food is being absorbed and broke down properly or that there isn't anything preventing his intake. We did the barium xray yesterday -Ashton had to drink some fruit punch flavored barium shake while the doctors watched it go through his digestive system on xray. -this part sucked! It didn't hurt him, but scared him a lot. I am sure glad we don't rely on fruit punch flavored anything as a primary food source! The xray room is dark, the table is hard and they had to keep rolling him around from back to his sides to get the right views of the barium fluid in his digestive tract. He got LOTS of stickers and a slinky at the end!
So we are still waiting for a few of the test results and have a few more tests to go. We are nearing the end of the run here and are holding up well. Ashton is such an amazing kid and recovers so well from all of the prodding and poking! They have such an kid friendly attitude and rooms at Mayo it makes life much easier!
We will be returing to Mayo on Monday the 9th for the EMG and Endoscope (both under anythstesia) and will meet with our neourologist to review results -and be one step closer to completing every test imagineable!!
So, as with most superheros Ashton is pretty mysterious! we are currently stumping the best of the best doctors, but aren't at the end of the road just yet. Here's hoping that the answer to everything is nothing! -and that time and maybe some physical therapy will be the perscription!
PS. Kiera is doing very well! Becomming a very active girl and rolling around everywhere as well as experimenting with her voice more! She had her 6 mo check up today and is tracking in the 50th percentile for all of her measurements and is on target for her skills/abilities-just a bit cranky from the shots... ugh! :)
02.27.2009
We had our appointment at Mayo today~ Holy Cow!!! It is beautiful, accomodating and amazingly efficient.... and not to mention the great doctors we had appointments with. Today we had appointments with an endochronologist & geneticist who ordered lots of blood work (5 vials all together with pokes in both arms! Ouchee!) and wrist & knee xrays (checking actual bone age). We did not get answers today, but we did get a lot of hope!
The doctors and technicians we dealt with today were great and Ashton was such a brave boy for everything! Every appointment/xray/bloodwork stop they gave him a toy or sticker! The host in the cafeteria for lunch even gave him a color book and crayons! Ashton greeted everyone today with his usuall cheerful "Hi, How are you?" and was in such good spirits all day! He was a real trooper!
We will be traveling back to Mayo on Wednesday the 4th of March to review todays work-ups as well as see a gastrointestinal specialist, neurologist and visit again with our endochronologist. We are very impressed thus far with the doctors and facility and left today feeling closer to the answers we are looking for!
02.16.2009
Hey All- Thanks for the kind words! We have our first appointment at Mayo in Rochester, MN on Friday February 27th. Our first appointment is at 9:30am with a pediatric endochronologist (specializing in childrens growth) -the we will be shuffled to different specialists that day depending on the reccomendations of the first doctor. Really looking forward to moving on from this and hopefully find an answer for our 'Amazing Ashman' -that's Ashton's super hero name that his cousin Snowden gave to him! Ashton's my superhero!
Ashton Othmar Fox is a super charismatic and social little boy who loves to color, play with his sister, tease the dog and act silly. As most of you already know Ashton just turned two years old and has had a pretty intense medical history so far with multiple visits to Children’s Hospital, clinics & specialists and an array of space-age testing. To date however we have not been able to officially diagnose him with a specific disorder or disease. The only answers we have from any medical professional is that he has a gross motor delay (he is not walking yet –but 4 point crawling like a madman!), is very small for his age (in less than the 1st percentile), and has hypotonia (overall low muscle tone that has made it difficult for him to keep up with his peers physically) -but so far no one diagnosis to explain his challenges. We are still searching for an answer to tie all the ends together.
Ashton’s progress in the past six months has been extremely encouraging with him finally able to independently get to a sitting position, four point crawling, pulling up to his knees, standing with support, greatly expanding his vocabulary and saying three word sentences! –his favorite is Hi, How are you?
January 2009
We just had Ashton’s two year well check today and our family doctor has given us a referral to work with some of the best physicians in the world at the Mayo Clinic in Rochester, MN. We are thankful for this opportunity and in the next few weeks/months we hope to finally put all of this behind us and have a clearer picture of what the future holds for us.
We look forward to keeping you all accurately updated with our progress. We hope you will keep Ashton in your thoughts and prayers!
Love you all!
Shelby, Sarah, Ashton, Kiera & Dixie the Dog
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