(Look I caught him in the act!...Little booger never has that dang cannula in his nose!...he also has to have something in his mouth at all times!)...Doesn't he look so angry tho?
So...I know it has been quite a while since I have posted but things have been pretty hectic. Between all of Aydens appointments and making all of the plans for our wedding I have had no extra time to get online at all. Ayden has been having issues back and forth with diarrhea and now constipation. We had several visits to the pediatrician for diarrhea and a few cold symptoms but new or different regimens are never given. He is still on 28cal Pregestimil and is finally steadily gaining weight. One of the nutritionists at Cincinnati Childrens' actually mentioned that he may be gaining too quickly now but decided to leave his feedings as they are and let his GI doctor decide whether or not to make any changes to his diet and such....His first outpatient GI appointment is on Tuesday so hopefully things go well.
You know, when I let too much time pass by between postings I find myself leaving a lot out!...lol...So please excuse me if I jump around quite a bit :-D...
So first and foremost, since we have been going to Cinci for the ML&B and scrapings every 2 weeks we are beginning to find a bit of a routine finally. At his last procedure things went pretty smoothly and he only had to stay in the hospital over night. He has next procedure on Wednesday and we are hoping for this one to go just as smoothly. In addition to the ML&B they told us that they may do a pH scope while he is calm after the surgery to test just how under control his reflux really is. I guess we might as well get to use to these frequent trips to Cinci as the ENT doctors say that the polyps usually do not slow down until the child is around the age of 7. Boy do I hope things slow down before then!
When it concerns pulmonary, Ayden seems to be staying at the same point. The pulmonologists all say he sounds really good for a baby with "chronic lung disease"....They said that after his last ML&B that there was a little more air trapped in his lungs than they like to see and was sounding a bit more wheesie and so now they are having us give him albuterol treatments to see if this will help him at all. I dont see a difference yet but maybe it takes a while to show the improvements. He is still on 1/8th of a liter of oxygen but his Pulmonologist as well as his pediatrician have mentioned getting him off of it completely by fall at the latest. Crossing our fingers in hopes of improvements in that area as well!
Ayden had an opthomology appointment this past week but we didn't find out any more news because Ayden refused to allow the doctor to get a good enough look. Ayden was so ticked off about the exam that he was kicking, screaming, punching and clawing anyone who touched him. And so, now we have to go back to Dayton on the 6th into the OR so that they can put him to sleep in order to get a better look. His last exam was in Cincinnati in the beginning of March and it had shown that the eye hadn't developed any further after his laser surgery but the ROP had not returned. We are patiently awaiting what this new exam will show!
Now for the big news!....We have been waiting so patiently to know where Ayden falls when it concerns his developmental delays. We have still not been able to get into the Developmental Clinic at Dayton so we have not started official assessments or any therapy but he was assessed by Help Me Grow and BCMH.
His assessment through them was on April 12th (Ayden was 4 months adjusted at this time) and their assessment showed that his abilities were on the following levels:
Cognitive:............3 months
Language:...........2 months
Gross Motor:......2 months
Fine Motor:........3 months
Social:..................2 months
Self-Help:...........2 months
The specialist who assessed him was actually pretty surprised how interactive he was amazed by how much he moves. She said this is vision issues my be one of the biggest things holding him back at this point!...Hopefully we get similar results at the Developmental clinic and we are able to find ways to help him catch up as I know the older he gets the larger the gap of developmental delays get as well.
Ayden now weighs 12lb 8oz but has still remained a mere 22in long!
Sounds like things are going pretty well. :-) So glad for you and Ayden. By the way we have some Pregestimil left over that has not been used. Three cans if you need them. I hate to waste and they will expire July 1st. If you'd like us to mail them to you please let me know. Email me at nnyL1806@yahoo.com
ReplyDeleteThis was actually the second time Braden has had the PH or Impedance probe. Both are very similiar. He had his first one August of last year and he did pretty good then but the nose tube came out during the nite. If Ayden has to have one I was told the minimum time is 8 hours for a study. That's without a do over. They prefer at least 20 hours of data. If Ayden tends to have drainage make them tape it like Braden's last pics. It worked really well and last time his tube came out because the tape didn't hold with a runny nose.
ReplyDeleteThat face just begs a smooch.
ReplyDeleteHe is SO precious and SO adorable!!!
ReplyDeleteI have micro-preemie twins {girls} born at 23 w 5 d & 24 weeks even {yes, two days apart}.
I am SO happy to find your blog of your sweet precious little boy :)