Hi Everyone,
We are nearly 2 weeks post eye surgery and happy to report that Owen is doing amazingly well. We are very excited at the continued improvements we are seeing in his ability to focus and use both of his eyes in tandem! It has been a real life changing experience for us... and him. Within hours of his surgery we noticed minor changes in his motor skills and now two weeks post surgery we are seeing some profound changes in his motor skills and hand to eye coordination. We are very certain the surgery was successful and his brain is molding the two singular images into a full field of vision, we hope that in the future he will achieve full binocular vision. He is now actively reaching for toys and using his hands and eyes together to explore his world. For the first time he has been able to pick me out from across the room and smile in response. He has also for the first time been exploring our faces with his hands. He is also rolling more often and enjoying long stints of tummy time. We think that rolling and tummy time may have been confusing and limited his visual fields prior to surgery. Imagine rolling over while crossing your eyes- whew! The surgery has truly been a blessing and we look forward to continued visual improvement as his eyes adjust to their new normal. We are still experiencing the mysterious non-weight bearing issue that we had/have with Ashton manifesting itself in Owen too. We don't know why- we assume it is a symptom of the unknown condition, but for some reason both seem to lack an interest in bearing weight on their legs. At eight months a typical baby would flex and brace to stand when held in an upright position with feet on the floor, Owen and Ashton both have 'spaghetti' legs. They both at 8 months enjoy bouncing in the jumperoo, but otherwise show no interest in weight bearing. We hope and pray that the earlier intervention of PT/OT services with Owen will improve his mobility development.
During Owen's eye surgery he had a repeat echo cardiogram performed. In July during a routine heart check they were able to see a small hole (a PDA) as well as some narrowing of a ventricle. The newest echo cardiogram revealed very favorable news! The technicians were able to document that the small hole is spontaneously closing and that the narrowing that they saw before is not severe enough to cause him any cardiac trouble. Thank God for answered prayers!
We had a visit with Owen's surgeon for a pre-cleft palate operation visit. We went through the risks of surgery, but understand that they are reasonable risks to take in effort to greatly improve his quality of life. We also discussed the upcoming procedure and surgical expectations. I was sad to hear that they will not be closing his upper gums until he starts to get his adult teeth. They would like the baby teeth to 'do their thing' and then between the ages of 7-11 repair the gap in his gums with a bone graft from his thigh bone. This will give the adult teeth a proper place to anchor and give his dental team a chance to tackle the orthodontic part in a more efficient manner. On October 25th, 2010 the surgery team will close his hard and soft palate to give him much better function of his mouth for swallowing and speech. Like all of Owen's surgeries, I am a bag of mixed emotions -mostly anxiety and excitement. The anxiety comes over the risks of surgery and the re-learning Owen all over again. He is an ever-changing little miracle and we are always learning new skills and re-learning some of the daily cares that we have just mastered, but I've heard that cultivating a diamond takes time. :)
Since my last post we have received an update regarding our August 5th Mayo Clinic visit with Ashton. We reviewed his blood work and it showed slowing levels of Cortisol (stress coping hormone). We were incredibly saddened by this, as we are already replacing his Growth Hormone with daily injections and had been hoping that we would not have to begin supplementing his other pituitary hormones until he was a few years older. We have accepted the fact that going forward it may be a reality that Ashton's pituitary will quit working like Owen's, but we aren't willing to give in yet. We discussed the options with our endocrinologist and we opted for a re-draw and see if the numbers would improve... Our prayers were answered. The Mayo Clinic called with the results of Ashton's blood draw- the Cortisol numbers improved to within normal range, as well as steady trending of his other pituitary hormones!!! We hoped and prayed that his numbers would improve... it worked! We are incredibly thankful to God and you all for keeping us in your thoughts and prayers. The power of prayer is miraculous.
Ashton had is blood draw for the autosomal recessive gene quirks... he's becoming quite the super kid when it comes to blood work. The lab techs at the clinic always give him the all star treatment! No bandaids for him, he likes the thick blue tape looking stuff- it looks more superhero esque. Oh, and don't forget the stickers and green suckers! :-) The blood work is at the laboratory in Florida, but we won't get results for a month or so. They are examining very small parts of his DNA(transcription factors) to see if there is any identifiable glitches. It's a real double edge sword. We want to know what is effecting our little guys, but there may be little we can do if they find a defect within the DNA. An answer will however grant us the ability to make more informed decisions regarding their health and the possibly the ability to identify whether or not Kiera is an unaffected carrier of a defective gene.
Ashton began physical therapy in Mr. Browns room again for the school year. We are incredibly thankful to Mr. Brown, his students and the middle school staff that allow us to use the special needs room for Ashton's physical therapy during the school year. The room is much better equipped for a child with mobility challenges and the special needs kids are so encouraging and a real motivator for Ashton. We frequently get to walk in the hallways and socialize with the middle school kids as a type of 'treat' for our social butterfly. We are always so grateful to all of the kids and staff that encourage and cheer Ashton on in his quest for independent mobility. We are hoping that as Ashton's mobility becomes more independent he will be able to transition to the Early Learning Center for Pre-Kindergarten classes.
Kiera's Birthday party was a huge success! We had such a great day and were very blessed to be surrounded by wonderful family. I can't imagine that she could have had a better day! She will have her two year well check with our primary family doctor on Friday. I don't expect we will have any surprising news with her health. She is on a steady growth pattern, very active and has a vibrant personality. Although, I wouldn't be surprised if they told me her heart was made of gold. I really can't tell you all enough just how wonderful she is. While a lot of our daily focus is on the needs of Owen and Ashton we are always careful to make sure she gets some special time as well. Kiera has transitioned from her crib to a twin bed without losing a single wink of sleep. We celebrated her transition with a princess themed bed set and canopy. She looks so small in her big girl bed. Just like with her crib, she waits for us to come and get her and goes to sleep without a single fuss. -She actually closes her eyes and smiles when we put her down, it's the sweetest thing you have ever seen.
We are steadily winding down with the end of Summer. We were able to enjoy the Rutabaga parade with most of the family and we are looking forward to our upcoming camping trip. Shelby and I are doing well. I have been spending the majority of my time shuffling kids to appointments, keeping up with med schedules, insurance, bills, potty training kids, my Adventures work, dishes and laundry. Shelby's work is steady. He's on the search for a new work runner vehicle- he hit a deer and totalled the Aurora at the end of August. We got a very good deal on it when we bought it and unfortunately have not found a second good deal. He took a quick 3 day Canada trip and enjoyed some good fishing with his Dad. The weather could have been more cooperative, but it was a nice mini-vacation for him.
I guess that's about it for now. I know it's a ton of information, but it's our life. We are thankful for our family and friendships. Thank you all for keeping us in your prayers. Hugs & Love, Shelby & Sarah Fox
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