Supporting the wee ones

As you know, little G spent 17 days in the NICU viagra est il efficace. He was born at 37 weeks and 2 days, not that shy of full term. We now know his issues are related to his chromosome abnormality, but so many NICU babies don’t have genetic defects, but will experience a multitude of similar issues, simply because they didn’t make it to full term.

It was astonishing to see the itty bitty babies in the NICU born so very early – I don’t know how NICU nurses do it. Add to that so many of them were born early due to lack of prenatal care, and it is heartbreaking. So help us help them!

Daddy P, little G, sister C and I are walking for the March of Dimes this weekend, thanks to the peer pressure of a dear friend who specializes in high risk pregnancies. She was our go to resource as we learned more about G while in the hospital, and if she believes in March of Dimes, so do we!

Go here to help the little ones out!

 

Optometry Checkup – 8 Months

8667615443_414b87277a_cToday was G’s 8 month vision exam with our Pediatric Optometrist.  If you remember in our last visit, G was diagnosed with Delayed Vision Maturation which just means that he was delayed in his vision development but would eventually have normal vision.  At the time, the Optometrist told us that she did not think that G had Cortical Vision Impairment (CVI) which is more serious and has to do with how the brain processes the images that G sees.

Well, today we got the diagnosis that he probably has CVI.  I was pretty disappointed about it and Mamma C was pretty down as well.  CVI means that G will have a variety of outcomes for his vision, but he will most likely never have completely “normal” vision.  It also means that he will have many challenges when it comes to reading, dealing with crowds, etc…

Obviously, it wasn’t the best news, but it’s not the end of the world either.  We have been encouraged to see G make progress in tracking objects and focusing on us more recently and that doesn’t seem to be plateauing or slowing down.  He’s still just as smiley as ever.  We’re just a bit concerned as to how he’ll be impacted by his vision impairment going forward.

The next steps for him involve getting him hooked up with vision therapy through Early Childhood Intervention (ECI).

Hi Ho, Hi Ho, its off to the ENT we go…

Today was Little G’s follow up appointment with the ENT, and I went in as if I was preparing for a battle. Research papers in hand, a second opinion from a world renowned pediatric ENT, and most importantly, mother’s intuition that G CAN hear!

Well, to my surprise, there was no battle. While he was equally disappointed that the sedated ABR didn’t come back great, he also didn’t feel we needed to jump right back to a sedated procedure. He had been pressuring me for a CT scan to check the middle ear bones, and he didn’t even bring it up. (And I am whole heartedly against it at this point!)

So, we will go back when G is a year and see what is happening. The crazy thing is, that is just a few months away!!  Time is flying!

In other news, G is doing well with his therapies – he is much less “bobble head” these days when he sits, and the nanny just mentioned he keeps rolling from his side to his belly, which is a new development. He will go back to the eye doctor next week, and we are hopeful they have seen progress in his vision and we are only dealing with near sightedness.  He is eating great and doesn’t make terrible gagging noises anymore, so surely that is progress!  All in all, things are moving along!

 

I think I can, I think I can…

I must admit, I have been feeling a little discouraged recently…now that G is 7 months, rounding up to a year, it seems to hit a little harder home how far he has to go to reach his milestones….when he was 6 months (which still rounded down!), it seemed there was all the time in the world for him to get there, and we were so hopeful he would catch up to his peers in no time. Well, here we are 7.5 months and G can’t sit by himself, roll over, babble…but he sure can smile and giggle, which is awesome. We thank God every day for his little personality which is starting to shine.

Daddy P and I started to wonder if his low muscle tone would go away or if he would be “floppy” all his life.I expressed my concerns to his physical therapist this week and she shared that there is a wide range of “normal” muscle tone, and you can see it just looking around – those folks who slouch have lower muscle tone, and those who sit super upright and stiff have high muscle tone. The important lesson is that while G has low muscle tone, it doesn’t mean he isn’t strong – strength and muscle tone don’t go hand in hand. She did some exercises with him to show his strength and prove to me his muscles do work in there, they just need to get stronger. He has come so far in these 7 months that she does feel confident he will get there. While she can’t say for sure that he will be able to sit or stand or walk, she does feel confident that he will someday.

G is interacting more with his big sis too which is awesome to watch – they played “row, row, row your boat” the other day and he was over the moon. He lights up the minute she is around, and wherever she is, he will kick and squirm trying to get to her – I know she is a huge incentive to him to get mobile, and she loves running around to keep him paying attention!

Lil G received the book “The Little Engine That Could” for Easter and I read it to him today…keeping in mind his attention span is usually a matter of seconds, he sat through that entire book giggling and kicking and wanting more.  He works so very hard every single day to overcome his physical deficits, and in his own little way, he was showing me how much he knows he can do it! He is a huge inspiration and an important lesson to not take one single movement for granted. I love that little guy and can’t wait to see what his next miracle will be.

2013-03-30 16.39.52