Saturday, May 29, 2010

Pirate and monkey

The days have been good to us. The weather has been beautiful. In between our regular therapy and medical appointments we have enjoyed playing outside (porch, deck, taking walks), anywhere that will give us some shade against what has been some unusually hot, hot days. Anywhere that doesn't actually touch the "green stuff" that is. Do all babies have an aversion to grass? I think its rather funny to watch Nicholas hold up his feet FOREVER just so they don't touch it.

Recent appointments have been all pretty positive. Neurosurgery check up--great--no need to return for a WHOLE entire year (knock wood). Our weekly helmet appointments have been able to be knocked back to every other week (yeah more room for play time). Our neurosurgeon recommended Alex stay in the helmet until July when he will be one year adjusted age. He's really been so hot and sweaty already with the recent weather that I am a little disappointed he has to be in it through July at the heat of the summer but I won't mess with success--that little helmet has done an amazing job on his sweet head!!

Alex also was seen this week by his pediatric opthamologist who said its time for patching. Our little man will soon be the cutest pirate you ever did see, for a couple hours a day anyway. We had noticed several months ago that one of his eyes was turning in every so often and took him to see his eye doctor. We have been on a watch and wait see since then but it hasn't gotten any better. This week's visit said he is really using his left eye predominately and there is a concern that because his right eye is getting "lazy" basically, the brain may start only getting input from the dominant eye and start ignoring any messages from the weaker one. We will attempt to make his weaker eye work harder by patching his good eye a couple hours each day. We will do this for two months and then have another check. I have to admit I was feeling a bit defeated when I left the office that day. All I could think of was having to hold him down to stick this patch to his eye every day when we already fight with him every night to tape the oxygen tubing to him. He just hates it and has this heart wrenching sob so I always feel like I'm traumatizing him. However the patching may save him from having to go on to get glasses or even eye surgery so its definitely something we have to try and hopefully more than worth it!

We just started patching this morning and I shouldn't be surprised, Alex
as always was a trooper!!!! And really isn't he the cutest?
tubes, wires, helmet, patches--they are just no match for our boy!

On a really great note, Alex was also seen by his pulmonologist and got another chest xray. His lungs look much better than the one just six weeks ago. They said he still has the lung scarring of a baby with BPD but the upper lope of his one lung was no longer collapsed and looks to be oxygenating just fine. Can you hear a huge hallellujah from here? We were so happy to hear this news. They gave us the go ahead to make another wean to his oxygen level at night and see how he does for a week and its already been a few nights and he's doing EXCELLENT. If it continues to go well, we call next week to get an overnight oxgyen study done and I don't dare to say it too soon but it would be amazing if soon he didn't need it anymore!

Any parent who's ever had to deal with oxygen long term totally gets this. Obviously knowing that your child is well enough to not need this is HUGE. Second, third, and fourth to this is not having to battle your child to keep the oxygen prongs in his nose, trying to get the darn oximeter on his foot just right so you get a good "reading" (this can take several tries every night and sometimes having to go in the middle of the night to re-do it because its come loose, etc. I know I've talked about this before but I will not miss hearing that alarm at all hours of the night and getting that instant rush of adrenaline not knowing if your baby is having a hard time breathing or if the oximeter is just flaking out again......well I don't want to jinx it but whenever the day does come, I will certainly be in the mood to have one big bonvoyage party to all the oxygen equipment!!!

Lastly Alex has been having weekly feeding/speech therapy to address issues with choking/gagging and he's already made such improvements in the past month. We are now up to chunking up some of his favorite foods out of the jar as well as breaking up bits of cheerios and crackers in a bit of juice or water and he's loving it. His brother ironically is actually taking longer to be convinced at the new textures and is gagging and refusing more of the new foods. Go figure. Also the speech therapist has been working with Alex on opening his mouth more and vocalizing. Alex would very rarely open his mouth to make any sound unless he had his hand or something he was teething on. It would take an army most days to get him to open up his mouth at all. Not uncommon we are told with babies who were on ventilators for a period of time and all the times he has had mouth/throat suctioning when he was an infant and even recently with pneumonia. Just in the last week we have seen HUGE progress with this. Take a look at these awesome pics of open mouth smiles on a gorgeous baby who is finally feeling a lot less guarded and not locking his mouth shut.

It just doesn't get more picture perfect than that!!!!

Nicholas is doing great as well. He recovered from his surgery like a rockstar. He came off of the anesthesia with no difficulty and was up playing within minutes of being awake. The nurse commented that she picked him up to hold him and he fussed so she put him back down on the crib and he was rolling around happy as a clam. Sounds like our Nicholas.

He is busier than ever. He's army crawling every where and his favorite place is looking out the front door and then slowly swinging the front door more open, more closed, more open, close. I am mystified how this simple thing can occupy him forever.

picture caught by my phone, is this not the sweetest thing?

Mystified and thankful because when he's not at that front door these days, he could be anywhere. He really is non-stop busy. When he's not crawling around looking for the next thing to get into, he's trying to pull himself up to stand on everything.

He also loves doing acrobatics, he does the funniest little thing where he puts his head on the floor or crib and puts his butt up in the air but his legs are straight---looks like a tripod--its just hilarious. He keeps working on this over and over. I wish I had a picture of this. Most days, he tires me out just by watching him.

I'm not sure if I've mentioned this before but we affectionatly call Nicholas "monkey" or "monkey feet". He uses his feet like an extra pair of hands. seriously. Maybe a lot of kids do this, I'm not sure but it sure makes us laugh to watch every time he does it. Hopefully it makes you smile too!

1 comment:

Stephanie said...

Your boys are such a joy! They make me smile from ear to ear whenever I see their happy little faces! I hear ya on the oxygen. We've actually come full circle-Nathan used to hate when we would put it on (and consequently pull it right out) and now he actually HELPS me put it on at night. It's almost as if he needs it on to sleep! But Alex won't need his much longer and you can say goodbye and good riddance to all that equipment. What a great update-thanks for sharing!