We are about 20 days from Owen's palate closure! It's a really exciting time but it's filled with lots of anxieties as well. It's a complex emotion to realize that all of the things that you have just learned and figured out about your baby are going to change, again.
We have gotten very good at using Owen's adaptive spoons and special technique to feed him purees and cereals. We've had so many small win celebrations- Owen using a bottle, then working up to using a bottle enough to be G-tube free, spoon feeding, then spoon feeding enough to get the all of the required calories he needs... and so on. These little celebrations have, and will continue to be a huge part of Owen's growth and development. On one hand it's wonderful that we will be able to put all of that behind us and move on to a more 'normal' life for him. But on the other it's tough because together we will have to re-learn the skills we have just mastered. I think it's like the equivalent of an accident victim learning to walk again. There is the devastation at the loss of a skill, the frustration of having to re-learn the skill, a lot of work in between and then the celebration and thrill of finally getting it back again... and then you never look back. : )
We have not used Owen's G-tube in over 2 months now!! His Mickey button is still in place on his belly, we have chosen to leave it in place until after his palate surgery. We flush it daily to keep it in good condition, but otherwise it's just there... it's kind of part of him now. It doesn't bother him as far as his mobility and he doesn't really pull on it anymore. It's easier to leave it in and not use it- than to put a new one in if we need it. We know it will come in quite handy after surgery as way to deliver his medications without disturbing him and as way to keep him full and comfortable without going through the discomfort of eating with his mouth right away.
During his palate closure Owen's ENT doctor will be checking on his ear tubes to be sure that they are clear and still properly placed. We are having them re-checked as we have not been able to gain a positive hearing screen for Owen. We are reasonably certain he is hearing well out of his left ear, but have not been able to rule out hearing loss in his right ear. Checking his tubes is the first step in re-evaluating his hearing abilities.
We had an appointment with Owen's endochronologist last week. We reviewed his current list of medications and what times of day we are giving them. Owen needs medication 6 times a day and they are all at very specific times so not to interfere with each other. We are trying to mimic the bodies natural hormone cycle. Only God and Mother Nature know his perfect balance, but we try pretty hard to keep it close to what his body would naturally do. His smiles and content attitude tells me we must be doing something right! We thank God everyday for the availability of his medications, without them Owen would not have made it through the first hours of life... not to mention the first 9 months! We had blood work done (our regular 3 month routine hormone check) and so far so good! We only had to slightly increase a couple of his medications because of his growth. Owen is hanging out at the 19# mark and gaining length at every appointment.
On Monday we had another follow-up appointment for his eyes in Stillwater, MN. His first eye surgery was a success, however it is looking more apparent that a second eye surgery will be needed to adjust the outer muscles of his eyes. We are still seeing some inward turning tendencies and with that can tell that his outer eye muscles are also weak. We were emotionally prepared for the possibility and we are expecting to schedule another eye surgery for the end of this year. Since his first eye surgery we have seen great improvements in his visual abilities and visual responses... now we're just helping him to get things tuned up!
Ashton is making steady strides in his gross motor development. He is seeing his PT at school two times a week and is really enjoying his PT sessions back at school with his friends. He had a chance to see his old PT that has been out on maternity leave for the first time in 8 weeks! He was really excited to see her and she noted she is seeing some major changes in his motor skills and overall development! He has been frequently asking us to 'walk a little bit' -meaning he wants us to help him walk! This is a BIG DEAL... it means walking, not crawling is becoming his preference! He is CHOOSING to walk!! Waaa hoooo! I think we're on our way!
It's apparent to us that his body is responding to and processing the growth hormone supplement well. He is gaining height and weight as well as appetite!! He seems to always be munching on something or asking for more food.. this is a little out of the norm for him. Prior to beginning growth hormone he ate enough to maintain his current size (because that's what his body told him to do... he simply wasn't growing and didn't need the extra food). Now he's really eating like a toddler, and out eating Kiera on many occasions!
Kiera is a big girl now, she's such a Superwoman... I think she was born a big girl! She is so ready and tries to do things that all of the big kids do- and most of the time she can do them just fine! She really enjoys spending time outdoors with us and running around like crazy! She runs everywhere- and then usually comes to a sudden stop and tells me 'look Mommy- I'm fast!' Her social and verbal abilities are beyond her 2 years! She is quite verbal and has no problem expressing what she wants and likes... or dislikes! :)
While we have had a lull between surgeries and appointments we have enjoyed time together as a family. We went to the Fawn Da Rosa animal park last weekend and had lots of fun with the animals and hope to go to the Pumpkin Patch this weekend. We're getting a lot better and getting all 3 of them out of the house together.. it requires a significant amount of planning and wrangling, but we enjoy getting them out and about as we know they love it too. We've been very lucky to have our niece Nikki Fox around often to lend a hand, she is truly a treat to have around and such a big help with the kids! We are very blessed to have her so close and so willing to help!
Shelby and I are celebrating our 5 year wedding anniversary this weekend- we have been given the opportunity to get away for a night, thanks to Grandma and Grandpa Fox. We've been through a lot in the last 5 years- cheers to many more years to come! <3
Love and Hugs to you all! We couldn't do it without you!
Sarah & Shelby Fox
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