Kyle has GREAT NEWS to report!!!!! His high risk pedi took him off oxygen during the day!!! I called john and was so excited - who cares about a jacked up house - kyle is off oxygen!!!! (during the day anyway!) It is such a freedom - during the day now he is like a regular baby to cary around - no giant tank to cart with you - no wires to get stuck and almost yank his face off (oops! j/k but other mom's with this you know what I mean!!) just a regular boy!!! We are excited - however kyle is far from a regular boy - she also said he was developmentally on target for a 7 month old! He is really doing great!
I have a preemie mom question - since we have come off oxygen during the day - Kyle is a bit fussier, I though I noticed his mouth a bit purple on the inside like it used to get - he was fussing at the time but when he calmed down it went away - and his slow heart rate alarm has been going off about 3 times a night. anytime I do spot checks during the day he his o2 saturation is 99.... any thoughts? he is cutting a tooth right now so that really could be the fussiness - but has anyone else noticed any of this when weaning? My doctors seems to care mostly about the numbers so they are not concerned but I am just wondering what other mom's are noticing.
Then we went to Dr. Hitner b/c one pupil is larger than the other and one eye opening seems larger than the other at times too. Kyle's enlarged ventricle and PVL is on his left side near some optical nerves so I guess checking on this stuff stays in the front of my mind. She checked him all out - dilated and all! Kyle's eyes are perfect she says - no nearsightedness, no glasses needed, no ROP, no disease - perfect. and the best news is he looks so good she doesn't even want to see him again until he is 4!
So 2 GREAT - EVEN MORE THAN GREAT - appointments in one day.
Occupational Therapy resumed this week (after Ike) and we mostly worked on feeding. Kyle still could care less about the bottle. he takes about 2 ounces each feeding - but he love his food! Now I say that and last night he drank his whole 6 ounces at dinner. anyway - his doctors are not too concerned about this b/c he is gaining weight and likes to eat baby food. We have had the gagging problem that sometimes ends up in full blown vomiting. and as the speech therapist pointed out I really do feel like it has to do with textures and when any texture - thicker cereal, a small chunk, hits the back of his throat he gags. once he gets used to it he does better. Our OT today suggested using an oral tool or baby tooth brush before we eat to get his mouth ready and used to something being in it. Then if I am feeding him green beans baby food - mash up 2 green beans and mix it with the container. then have some water - b/c strange enough... he does not gag on that - most babies I know really get choked up on water! he drinks water from a cup (if I hold it) very well. and if he starts to get gaged on the food offer some water to get the pieces of food down his throat.
this worked great - kyle made it through a whole meal with some texture with no vomiting!!! This is a first. He did gag several times but each time I would either distract him or give him a sip of water. The distraction idea was interesting - b/c the signal (or lack of signal or immature signal) comes from his brain that causes the gag when I would distract him we was able to swallow. I'm sure I am butchering that philosophy but my point is that it worked and our OT is brilliant! We will be doing this 2 meals a day until he gets used to textures and then move to 3.
You can also see some of these motor planning and coordination things in kyle's play - he may respond delayed or show on his facial expression that he understands but actions maybe slower to follow. His movements are still very gross motor rather than moving to some fine motor. Meaning his motor planning and coordination is still a bit immature.
Kyle is doing well with the crawling position. Previously if you lifted his lower torso off the ground his legs would still stick straight out - he prefered to stay in extension. This can be a sign of tightness - CP. But for kyle they just thought it to be lack of time in the womb. when term babies are in the womb all curled up and pushing against mom - kyle was laid out flat in an incubator so he did not develop the same way. So now after several weeks of working on this when you lift his tummy off the ground he pulls his knees up under him and 2 days ago for the first time he stayed that way when I let go of his tummy! He is making good progress.
We are working on some motor planning now - setting a toy off to his side and encouraging him to lean over where he has to hold himself up and get the toy. we are also working on putting objects in a bucket, the feeding, crawling position, signing, moving from sitting to tummy, and turning on his tummy - like to look for a toy or get to a toy that is beside him instead of in front of him!
so lots going on - all good!!!! our house is being gutted now - we did meet our insurance guy - he is nice. and we found a water extraction company that will help us get the water out of our furniture and make decisions for furniture regarding what is salvageable. So as soon as power comes back we can get going on this. I think we have also hired a contractor - he seems nice too!
We have moved into my moms and for now have decided to stay there - all kyle's therapies and home medical companies have been moved so until we get the final word on where we can live and what they will approve - we are staying put - we hope to stay put for the whole time.
AND we got word from this contractor that he would like to have us back our house by christmas!!!!!!