Monday, September 20, 2010
So since my last post Ayden has had eye and Airway surgery.
The eye surgery was a stribismus surgery to see if they could relax the muscles in the eyes enough to not cross so much. We saw results within the first week but things are slowly going back to how they were. Bummer!
Our Optho doesnt seem to be keeping a close enough eye on Aydens case either. Every time we have gone to see him he asks when we will be going back up to Michigan. We have asked for a prescription renewal for his eye drops and he just says to tell the nurse to do it for us. Well evidently they dont look at his chart either, and only gives us a prescription for one of the eye drops and doesnt allow for any refills. And even thought I have called like a billion times I never get a call back. Just to fill you in a bit on Aydens daily eye drops. He is on Cyclogyl to dialate and stimulate the eyes to keep them active, and he is on Trusopt for the Glaucoma. I dont know what else to do! So we have scheduled to go back to Michigan for an exam under Anesthesia. Since our Optho seems clueless and says that he can not see into Aydens right eye at all, we are hoping Dr. Trese will have abit more insight for us since he has not seen Ayden since the 1st week of December. Hoping another vitrectomy isnt involved but at least we will be a bit more informed!
Our trip to Michigan is on October 11th and now we are starting to worry as to how we will get him there and if we can afford it. Our local family services agency has been helping us with gas cards since my husband lost his job 3 and a half months ago but we have almost reached our limit for the year already. And if we have to stay overnight we have no way of affording a room close to the hospital. I feel soo helpless, I hope we can figure things out soon!
Here is Ayden chewin on his toes the day after his eye surgery. Silly boy cant get enough of them!
His last Airway procedure was the longest stent of time between procedures we had had since March and were quite nervous to see the results. The chemo injections are working wonders and we are able to keep on the every 3 week track and may even be able to go to only once a month if things continue at the rate they are going at this point!
On another note!...Ayden now has 6 teeth! I cant believe how fast they are coming in! He didnt get his 1st tooth until July and now 2 months later he has 6 teeth!...They are very green/yellow and one is coming in completely sideways though :-(. Upon our last trip to Dayton Childrens we stopped by the Pediatric Dentist's Office to see what process we needed to take to get him seen and they told me that they were not accepting new patients until January! Im hoping they can get him in immediately at that point but things dont look very hopeful for him getting seen even in the next 6 months!
Happy Boy sitting in his Toy Story chair
Oral Feedings are still non existant but we have a swallow study tomorrow!
Weight wise he is slowing down a lot and actually lost weight for about a week or so. After losing and gaining it back he is now back up to 18lb 8 oz. It seems like a lot but we are being pulled in too many direactions. For his age and development he is on track with weight. But, if he keeps going at the pace he is now he will not reach the 22lb mark needed to get his Mediport until after the New Year. I just dont think his veins will continue enduring the abuse until then. It took them 8 sticks to secure an IV for his last airway procedure! His poor little veins have just been used too much!
He is now being trialed off of oxygen during the day and is on 1/16 liter when needed and at night time!
Lookin grumpy&sleepy in his car seat. Hes gettin so big!
Developmentaly, our Pediatrician is now saying Ayden seems to be at about a 6 month level. He is finally sitting up for longer periods of time. He has lasted over a minute several times within the last week or 2. He is showing a lot of weakness on his right side and doesnt like to move his left side as much as he should. When doing walking practices he needs a bit of nudging to his left leg in order to get him to take a step with it. He loves to be stood up though! He is going to a cerebral pausey clinic the 1st week of October & we hope to get an official diagnosis so we can get more assistance in hopes of getting him caught up.
He is such a happy guy in spite of it all though! He has begun to give kisses and even attempt yo make the "mwah" sound.. of course it just comes out as "aaahhh" but its the cutest thing ever! The first time he did it without me asking for it I bawled like a baby! He wants to kiss me all the time now & it makes me so happy! At least we know he loves his Momma! I cant wait until he says his first real word! He has been doing little things like "mm k" repatatively when hes upset for months now (you know all parents hold their baby and say "its ok, its ok" when they are crying!) and it seems like he says "I good" when hes happy and playing and "ow" when he wants us to stop doing something to him. But we may just be hearing what we want to hear you know! He has yet to say the big ones that all parents expect/want to hear "Ma-ma", "Da-da". I just cant wait!
He is so amazing. I cant believe the improvements he has made and how big he is getting! Im so proud of him!
Posted by AWilder8509 at 8:19 PM