So I just realized I hadn't posted in about a month and a half. Wow has life gotten to me! With my sisters graduation, our wedding, and my graduation on top of all of Ayden's appointments and surgeries I feel like we barely have time to eat! So, I apologise for the long time in between postings!
In spite of the long duration between my postings, not many changes have happened with Ayden's care. He has continued to be in Cincinnati every 2 weeks for his airway procedures. In fact after his last procedure he was able to come home the same day! In spite of the swelling and lag from anesthesia he was back down to his baseline 1/8th liter O2 upon entering the PACU. We had to stay for 4 hours after the procedure for observation but were able to come home that evening! Typically he had been required to stay overnight in the Comlpex Airway Unit for observation but the nurses on this floor literally only came into his room once or twice during thier shifts...(and needed instructions for his care when they did come in)...It was totally pointless. And so, this was definitely a nice change of pace for us & Ayden seemed to be back to himself by midnight that night!
Aydens last GI appointment went well too. No changes were made and we do not have to go back for a visit until the end of July. The sad part of it all is that PO feedings are still at a stand still and Speech hasnt been seeing him. (the only good feedback we have gotten is the fact that he puts everything else in his mouth)...He doesnt have another Optho appointment until the end of July either. And, for some odd reason the pulmonologists are not following Ayden as closely as we thought. This is a bit unnerving because I feel like he may be able to be off of his O2 sooner than they think. In the mean time we have to tick him off by putting it back on him every 5 minutes because he hates it so much. During the day he always has the cannula in his mouth, under his chin, or on his forehead and laughing about it. At night when we get up to change the formula out of his pump or change his diaper we find the cannula at the end of his bed or clinched in his hand & yet his O2 Sat only goes as low as 94 (even with his stuffy little nose that he seems to always have due to environmental allergies). I mean I really do see a difference in his Sats when he has it on (usually 99 or 100) but I feel like they are just ignoring him at Cinci. I'm going to wait it out a little bit and just bump him down to 1/16th and go through the weening process without their consent, Ayden is so ready to be without the junk on his face!
Well in spite of our fewer specialists appointments, Ayden now goes to PT&OT two times a week and Help Me Grow has been coming once every other week. And in between those days we have been doing lots of therapy with him as well. He is beginning to love sitting up! Of course he still needs lots of support but he is beginning to lift his head more often. The therapists are amazed by how strong he has gotten in just the past couple weeks! At the beginning of his therapy sessions they were worried that he wasnt showing reflexes, was never trying to balance himself , he always rested his head on his chest, and would barely move when doing tummy time (he wasnt allowed to do tummy time until mid may due to 12weeks tummy rest from g-tube placement). Now he is bringing himself back to midline when he loses his balance, placing his arms out to the side to brace himself when he is tipping over, raising his head to see who is talking to him or to look towards a sound, and now when placed on his belly he turns his head from side to side and gets his little feet moving with his butt up in the air. (I am going to have to take a video of it soon...It is just the cutest thing! )...His therapists keep referring to this as his football moves!...In spite of all of his other improvements, he is still leaving his head on the ground when on his belly, not putting any weight on his arms, and not rolling over. He rolls to and from his sides with ease but shows no interest in rolling over completely (but I do have a feeling he will roll from his belly to his back before he rolls from his back to his belly...he is just too content laying on his sides). He has improved so much in this short period of time and we are so proud of him!
In spite of the long duration between my postings, not many changes have happened with Ayden's care. He has continued to be in Cincinnati every 2 weeks for his airway procedures. In fact after his last procedure he was able to come home the same day! In spite of the swelling and lag from anesthesia he was back down to his baseline 1/8th liter O2 upon entering the PACU. We had to stay for 4 hours after the procedure for observation but were able to come home that evening! Typically he had been required to stay overnight in the Comlpex Airway Unit for observation but the nurses on this floor literally only came into his room once or twice during thier shifts...(and needed instructions for his care when they did come in)...It was totally pointless. And so, this was definitely a nice change of pace for us & Ayden seemed to be back to himself by midnight that night!
Aydens last GI appointment went well too. No changes were made and we do not have to go back for a visit until the end of July. The sad part of it all is that PO feedings are still at a stand still and Speech hasnt been seeing him. (the only good feedback we have gotten is the fact that he puts everything else in his mouth)...He doesnt have another Optho appointment until the end of July either. And, for some odd reason the pulmonologists are not following Ayden as closely as we thought. This is a bit unnerving because I feel like he may be able to be off of his O2 sooner than they think. In the mean time we have to tick him off by putting it back on him every 5 minutes because he hates it so much. During the day he always has the cannula in his mouth, under his chin, or on his forehead and laughing about it. At night when we get up to change the formula out of his pump or change his diaper we find the cannula at the end of his bed or clinched in his hand & yet his O2 Sat only goes as low as 94 (even with his stuffy little nose that he seems to always have due to environmental allergies). I mean I really do see a difference in his Sats when he has it on (usually 99 or 100) but I feel like they are just ignoring him at Cinci. I'm going to wait it out a little bit and just bump him down to 1/16th and go through the weening process without their consent, Ayden is so ready to be without the junk on his face!
Well in spite of our fewer specialists appointments, Ayden now goes to PT&OT two times a week and Help Me Grow has been coming once every other week. And in between those days we have been doing lots of therapy with him as well. He is beginning to love sitting up! Of course he still needs lots of support but he is beginning to lift his head more often. The therapists are amazed by how strong he has gotten in just the past couple weeks! At the beginning of his therapy sessions they were worried that he wasnt showing reflexes, was never trying to balance himself , he always rested his head on his chest, and would barely move when doing tummy time (he wasnt allowed to do tummy time until mid may due to 12weeks tummy rest from g-tube placement). Now he is bringing himself back to midline when he loses his balance, placing his arms out to the side to brace himself when he is tipping over, raising his head to see who is talking to him or to look towards a sound, and now when placed on his belly he turns his head from side to side and gets his little feet moving with his butt up in the air. (I am going to have to take a video of it soon...It is just the cutest thing! )...His therapists keep referring to this as his football moves!...In spite of all of his other improvements, he is still leaving his head on the ground when on his belly, not putting any weight on his arms, and not rolling over. He rolls to and from his sides with ease but shows no interest in rolling over completely (but I do have a feeling he will roll from his belly to his back before he rolls from his back to his belly...he is just too content laying on his sides). He has improved so much in this short period of time and we are so proud of him!
So, on a non-medical blah blah blah note....Ayden has been such a happy little guy lately! He laughs at me a little bit but smiles often. But it is rediculous how much he laughs at his dad!...He can make a sound from across the room and Ayden will crack up laughin!...It is just soo cute...But I do admit I get a little jealous!...It is just so amazing seeing him smile and laugh so often!...Even with everything he has gone through he is as happy as can be just being at home with us!
Here are some picures of our lil man from the wedding!(dont mind his lil toes...somehow we forgot his shoes at home!)
Isnt he just too cute in his tux?
We havnt gotten our photos back from our photographer yet so there should be more to post later!...I also have other photos to post of him so I will try to do that soon too!
Weight/Length Update: 15lb 4oz & 23 7/8 inches long!....hes getting soo big!
