Sunday, April 25, 2010

Weeks 35-37....Long weeks...lots to report!

(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! 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!

Saturday, April 10, 2010

Week 35....Eating all but the bottle!

This past week has been pretty amazing. Ayden only had one doctors appointment this week and so we finally got to spend more than a couple days at home with him. I think he has finally adjusted & doesn't seem to get as overwhelmed by noise as he had been. For some odd reason he resists taking a bottle even more when there is a lot of noise around. He doesn't mind the sound of the TV but if there is conversation going on he refuses to eat. Of course this isn't the only time he refuses the bottle but noises surely do speed up his frustration with bottle feeding itself. I had hope that his feeding issues would resolve as his airway issues were handled but to no avail. Some feeds he refuses to even let the nipple go into his mouth while other times he will suck down about an ounce & then be done with it. I really don't understand how it all works or what is causing all of the feeding issues. He surely doesn't have an oral aversion. He is infatuated with his binkie and his hands. He has now progressed into grabbing anything he can get his hands on and putting whatever it is into his mouth as well. The cannula seems to be one of his favorites at the moment. He has been ripping the entire cannula off of his face and stuffing as much of it into his much as he possibly can. I am convinced that he only allows the cannula to do its job about 10-15% of the time as even when i check on him at night he either has it in his hand cuddling with it or he has found a way to pull the prongs into his mouth. He is just such a character already!

Just let me tell you how spoiled he has already gotten....When his daddy is home he acts like a perfect lil' angel...Will sleep mostly through the night and doesn't fuss a whole lot during the day....When daddy isn't around its another thing...He likes to keep me on my toes for sure!....He will be up all through the night and day unless I am holding him or at least holding his binkie in for him. Even if he has been sleeping in my arms for an hour if i go to put him in his pack & play he will wake right up and funny b/c he knows he has me wrapped around his lil' finger but its soo not funny when it concerns just how exhausted it makes me. Hopefully he will lighten up on me soon!

As for medical stuff...Ayden visited a new pulmonologist this week who was pleasantly surprised how "good" his lungs looked for a former micro-preemie with chronic lung disease. The doc didn't change anything & we will not have to go back for another 2-3months unless there are complications!....This week coming up will be much more eventful than last as he has visits from Help-Me-Grow, and BCMH and he has go to back to Cinci on the 14th for another airway scrapping. This every 2 weeks seems a bit much right now but I'm sure we will get in a routine pretty soon. Ayden also has an opthomology appointment, his next set of shots, and appointments with his GI doctor this month. We are still waiting to hear back from the developmental clinic to see about getting the assessments that will determine how far behind he is and just how much therapy he will need. We are very anxious to know the answers to these questions!

Growth Update: Ayden now weighs 11lb 2oz & is 22.25 in long!

I promised some new pix and so here they are :-D

Saturday, April 3, 2010

Week 34: Changes & Surprises...

So Ayden's last airway surgery went well but he has unable to let go of his oxygen and so he was kept until Wednesday evening rather than being discharged the next day. He is now being watched by the pulmonary doctors at Cincinnati and is back on oxygen. He is back on 1/8th liter and seems to be much more comfortable breathing than he had without it. Although we loved not being attached to wires and such we always knew in the back of our minds that he needed just a little bit of flow. He always just seemed to be working way too hard. This transition has been quite hard as now when it is just me and Ayden home alone I have to find someone to help carry the concentrator down stairs or be confined to our bedroom all day and go stir-crazy. I have a feeling I will be having many stir-crazy days to come!....Meanwhile, Ayden doesn't mind being confined to a room with me. As long as he is being held or talked to he is perfectly content.

Upon Ayden's arrival back at home this week he has begun to smile and coo and has even chuckled a time or two in response to our voices and touches!...It is freakin amazing!...I have to admit I felt as though he was never going to show any signs of happiness. Although he smiles for me a little, he smiles more for others tho. I still seem to be the only person he clams for though. I just wish he would show the happiness towards me more rather than just showing the comforting affects.

Ayden also went to see the Easter bunny this week because when he was in the hospital the bunny neglected to come to his floor :-(....Of course the photo we got from the mall was horrible but at least we have one to show later. He made the man in the costume very nervous as he coughed and began to act as though he was going to throw up...needless to say, the photo was very awkward looking to say the least!

Another amazing thing that amazed us this week was geared towards Ayden's vision. Of course we have heard time and time again that he would be blind and all we could hope for was for him to respond to light...Tonight before we were going to put Ayden to bed A.J. was playing with him a bit and trying to get a response by playing with his binkie. Instead of following it according to the touches he felt on his face, Ayden tracked it with is eyes from one side to the other! At first we thought it may have been just a fluke or a coincidence but he followed it another 3 times with his eyes and a 4th and 5th time by opening his mouth and turning his head as it passed by as well. It seemed as though he was thinking "where are you taking it?...It should be going in my mouth!"....It is still unbelievable and I am still in awe by it but we are trying to not get our hopes up too high about it....It just seems too good to be true!

Hopefully this next week continues to bring as many happy moments as this last week has!....We are just so giddy with excitement!

I have lots and lots of photos to share but no time to post them now...Just thought Id post a quick update & share our excitement!