Thursday, January 6, 2011

17months old (13mos adjusted)...Big update!

I have not posted in a little over 3 months and I really don't know why. Lots have gone on and lots of things have changed. But I have been feeling a bit down and out and even more exhausted than usual so I have not been able to bring myself to post anything.

Since my last post Ayden has been battling lots of different things of his own.

CP CLINIC & Therapies:
He was officially diagnosed with Cerebral Palsy...Spastic Diplegia to be exact. Since the diagnosis we have been focusing a lot more intensely on Pt&Ot. He has each of those therapies twice a week.

He began sitting up by himself for longer periods of time in October just in time to get some really cute Halloween pictures in his froggy costume I made him :-D

Eyes/Vision:
He has also had 3 eye surgeries since the last post as well. He is now only using his right eye in spite of all of the difficulties he has had with it. During his last eye procedures Dr. Trese had to separate the iris and cornea because it had begun to fuse together. The had to cut slits in his pupil to give him a greater chance for it to begin to dilate again. He has his 2nd vitrectomy in this eye as well as had to be injected with a thickening gel. His lens in his right eye also had to be removed. We are still waiting for a false lens to be fitted and placed in this eye. Meanwhile, the left eye has stopped functioning once again. This is the eye that had glaucoma and a cataract for over a year now. During his last exam on this eye the glaucoma has damaged the eye so much that it has now developed hypotony and is beginning to shrink. He is on numerous drops to try to increase the pressures again but if it continues on this track, the eye will need to be removed completely. For now the pupil isn't dilating and he does not open this eye very much. We will be making another trip(or 2) to Michigan for the procedures on this eye sometime before spring as well. He goes in for another EUA at Dayton with his normal Optho on January 20th. Hoping they will schedule his lens fitting then. He had to sit up for 6 weeks straight after his surgeries, he hated sleeping like this!

GI:
He has also been having one belly issue after another. He has had a positive c-diff since beginning his chemo treatments. Constant loose stools and puking due to this has forced us to stop doing bolus feedings. He is now on continuous feeds for 19-20 hours of the day and off for 4-5 hours to prevent the massive spit up that he was having before. He has been puking every time we give him his doses of prevacid each day but no reason can be found. The GI doctor who had followed Ayden since birth has now moved to another state and we were forced to see another doctor in her practice. This has not been working out, each time we go this woman asks how early he was and what surgeries he has had. And, with in the same breath suggests a fundo or a g-j tube possibly being in his future. Sorry, but for all of those changes to be made, I expect you to know my son and his specific needs not just throw these concepts at us after only seeing him twice. We are scheduled to see a new GI doctor at Nationwide Children's the middle of February. Hoping this doctor is more perceptive and insightful & we can get our little man back to baseline without another surgery!

ENT/Airway:
Since starting the chemo injections with his routine airway surgeries he has made major improvements. He is now able to go 2 months in between airway surgeries. It has now been 3 months since his last dose of chemo as well! This is a miracle in its self! We use to have to go every 2 weeks emergently! I am so thankful for the miracles the chemo has done for him! This has even made his ENT surgeon a believer!

Neuro:
He has yet to see a Neurologist either but we have finally gotten into one close by. That appointment will also be at Nationwide Children's during the month of February! Good news is that he hasn't had any seizures we have see since August!

Other Specialists:
Next week we will have our first visit with the amazing Functional Vision Specialist that we have been hearing about for the past 9 months! So excited to hear what she has to say and the feedback she gives us to help him interact with is surroundings more often. He will finally see the Pediatric Dentist next week too!

Speech/Feeding:
Speech/Feeding therapy has seemed to hit a brick wall. He has been gagging on more and more items and refuses to even do tastes of anything other than the meat baby foods. Even with this, he will only tolerate the tastes with a mesh feeder and so he does not get any substance from it. He has begun to drink his bathwater though. Which baffles me all together! So we have tried to put water in a bowl and he will suck up some water but makes a mess with it while he is at it. We are a loss when it comes to this. He is still not saying any words but he babbles vowel sounds constantly and plays with the tonality of his voice all of the time. He even laughs at himself with the sounds he makes. We have been searching for a new Speech therapist b/c our sessions just consist of us showing her what we do at home. It has been frustrating to say the least!

Aside from the strictly medical stuff:
Ayden has been making progress in a lot of different ways. He is rolling all over the living room floor to get to places he knows his toys are. He has finally begun to weight bare in the quad position. He babbles like crazy. Shakes his head when we say no. He bounces up and down when we say "giddy up horse giddy up" when he is on your lap/knee. And he gives kisses on cue.

We had a great Christmas & New Years with our little man too!...Look how precious he is in his Christmas pics!
This was our Christmas card that we sent out this year.
Hes still too small for some of his toys/presents but he loves them all the same. Look how proud he seems of himself!


Height/Weight Update:
Ayden is now 23lb 8ox & 31.25in long. That puts him in the 95 percentile for his weight,and 93percentile in height for his adjusted age!...He is in the 25 percentile for his real age in both! He is getting huge & has come so far! I love him so much!

10 comments:

  1. Your boy is so handsome and you are doing such wonderful things with him.

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  2. I'm so proud of him! I know there have been a lot of setbacks, but he just keeps on making progress :) You're doing a great job Athena!

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  3. Wow, Athena. So so so much going on with your little guy. I'm not amazed at how well you deal with all of the bumps and hurdles because I've become comfortably accustomed to your total awesomeness! :) You are the perfect mother for this darling little angel. How you even keep track of the details of your little marvel is a wonder to behold! He is such a lovely little boy and he is so loved! Thank you so so so much for the update.

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  5. Hi
    My name is Jenna and I came across your site. Ayden is an amazing little guy. Such a brave courageous fighter, inspiration, full of spunk, smiles, joy, and love. He is a special little guy. I will keep you in my thoughts and I wish you and Ayden the best as you begin this journey. I was born with a rare life threatening disease. I love it when people sign my guestbook it helps me smile. http://www.miraclechamp.webs.com

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  6. That baby is just so cute. All the photos that you post really show how healthy that baby is and I can see that you are taking good care of that angel.

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  7. How is Ayden doing.. havent seen am update in a while! hope you are all Well!

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  9. How is the baby I read his whole story today he is too cute

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