Nothing but good!

Lil G has had a rockstar week…and it’s only Wednesday!

We started with his 12 month check up. Most importantly, our little monkey has gone from <5th percentile in weight and he is now 85th, weighing in at a whopping 24 pounds. He is 31.5 inches long (95th percentile) and has a huge head (98th percentile). Suffice it to say, he is a BIG boy! Nothing too earth shattering at that visit, but our pediatrican was very encouraged with his progress. Poor guy was a trooper through 4 shots too!

Today was our 12 month follow up with First Steps which was AWESOME! They perform the Bayley test, which begins with 8 pages of really annoying questions that rub in all the things G can’t do yet. Then we visit with a developmental pediatrician for an hour while they play with him and see how he reacts.

As a reminder, below were the results from our 6 month visit (a score of 8-12 is average):

  • Cognitive: Score: 7 / Percentile Rank: 16 / Description: Low Average
  • Language: Score: 12 / Percentile Rank: 6 / Description: Borderline
  • Motor: Score: 4 / Percentile Rank: 0.1 / Description: Extremely Low

At 12 months, his results were as follows:

  • Cognitive: Score: 7 / Percentile Rank: 16 / Description: Low Average
  • Language: Score: 18 / Percentile Rank: 34 / Description: Average
  • Motor: Score: 15 / Percentile Rank: 16 / Description: Low Average

Look at that! Nothing but progress! Everyone was really impressed with his improvements in motor. I will say the test seems fairly subjective, but I will take the positive news! His gross motor is what has improved most (mainly because he can sit by himself for a short while), but we still have alot of work to do in fine motor. The biggest focus areas are getting him to pick up small objects (which will be a huge help with feeding!), and recognizing his name. His dietican was blown away by his growth chart, and no one else seems to be concerned about it being too much weight, so that has been encouraging.  After a great visit, First Steps explained they are there for growth and development following the NICU (they see kids up to age 3); because he is no longer at risk from a growth perspective, and progressing great, they are recommending we move away from them to a developmental pediatrician who will see him beyond 3. Of course there is only one in town :), but we have heard nothing but great things. For now, we plan on visiting her in a year and keeping the focus on his therapies between now and then.

And two more exciting tidbits – G got his new Theratogs today and he was AWESOME in them, AND his stander has arrived! We should get it next week. Check out this video of the little guy in his Theratogs, SMOs, and sweet socks working with his therapist.  He really is standing! It brought tears to my eyes, it was so awesome to see!!!

Hopefully this trajectory continues!  Thank you for the continued prayers!

G’s First Birthday!

G and cake messy

We celebrated G’s first birthday with two parties this weekend – needless to say, the kid loves cake! We decided it’s a pretty good motivator for him to try self feeding! Now that he is a year, alot of people ask how he is doing developmentally. Before I had kids, I never would have known what he is or isn’t doing,so for those in that boat, I thought this might be helpful. It’s also helpful for us to know what stage he is, and to share with doctors when they ask about him overall.

Developmental milestones

There are so many little things we celebrate every day – he can open his hands, lift his arms above his head, drink a bottle without choking,  is nowhere near “failing to thrive”, smiles, watches his sister, grabs his toes, sit up for a little while, pick up toys – all things we weren’t sure when of if he would be able to do. The next week we will learn more about next steps, but we are so thankful for what G has accomplished thus far!

Birthday smiles!
Birthday smiles!
Ready for some cake!
Ready for some cake!

 

Enough already!
Enough already!

 

Rockin’ my new shoes (and Kim Jong Il haircut)

New Shoes
Little G’s new SureStep SMOs

 

Little G picked up his sweet new ‘SMOs’ today from Hanger Orthotics here in Austin.  You can read more about what these things do here (http://www.surestep.net/smo.php).  But the basic idea is that he has a tendency to be really pigeon toe’d due to his hypotonia.  They lock his foot into an alignment that helps him get into the right stance for walking and standing.  He will have these things for about the next nine months.  They are really light weight and are meant to be worn whenever he is standing or doing his therapy.

In case you can’t tell. dad got him dressed today as was responsible for his hair.  My goal was to get it as tall as possible and I think I accomplished that goal.  Sorry little buddy, I know you are going to see this picture in a few years and hate it, but that’s what dads do!

It’s been a while…

Sorry we have been a bit behind on updates….so here goes….

  • G saw his geneticist a few weeks ago. After all of our concern about the guy gaining weight, now there is a concern he is gaining too MUCH weight! Seriously?! So, now we get to see an endocrinologist to make sure nothing else is going on….
  • His stander has been approved, so now we just a wait a few more weeks to get here…
  • His SMOs (Supra Malleolar Orthotics) are ready next week! He will wear these when we put him in the stander to give him more support and help his feet align with his ankles. When he went to get measured, the doc walked in and said…”This is exactly what I thought I’d be dealing with!” when I asked what she was talking about, G’s feet turn outwards, which I hadn’t even noticed beforehand! Apparently again, something pretty common for guys like him… 🙂
  • ENT visit – his tubes are in place and doing great, and as expected, no updates on what he can hear…they tried to perform some more tests in the office. With one, they put us in a sound proof box and waited to see if G would react to noises at different pitch and volume. The thing is, they were the most boring noises (white noise, a little beep)…if you want his attention, be more exciting! Needless to say, not alot of response except when they called his name. Duh! So, we landed at another ABR in a few months, when we get his MRI. We will schedule all of this once we get through his one year visits with all his specialists to ensure he doesn’t need any other procedures under sedation. And then we get to begin the fun game of trying to coordinate scheduling all of this again! (not. it’s terrible)
  • Stoller Wheelchair! G’s Physical therapist and Occupational Therapist both recommended we look into the Zippie Voyage. They don’t like his seating options when he eats (and apparently it has to cost $2,500 for them to find one they like!) 😉 We also struggle with restaurants since he can’t sit in a highchair, so this will be another solution. The medical device company brought it over for us to check out…it’s serious business, but for being a medical device, is fairly easy to use and according to the experts, the most light weight device we will ever find! So, that is in process and they are aiming for him to have it in 60 days…as previously noted, G is a BIG boy, so I think we will find this more necessary as he get’s to a point where he is too big to carry…which isn’t far for little Mama C!  I also like that it does appear more like a stroller than a wheelchair…at least from afar…the seat is pretty intense, but hopefully as G get’s stronger, we won’t need all the pieces to keep him in place and it will be more stroller-like… 🙂

So, that’s it! Big G has his one year birthday next week!! I can hardly believe it! Along with his pediatrician visit we will see the developmental pediatrician again so they can tell us all the things he’s not doing that a one year old should be. 🙁 We got the paperwork today where they want us to fill out what he is doing..it’s always a downer because he isn’t doing any of it (putting words together, waving hi and goodbye, pulling himself up). I keep asking them to give us the survey from the prior visit so we can show them what accomplishments he HAS made, instead of being reminded all he can’t do. He has made amazing strides in this year, and we are so very proud of him!

Until next time, here are a few pictures of the lil man from our summer adventures!2013-08-10 12.15.50 2013-07-27 15.48.58