Clinic

Ryan and I decided to make the move from University of Chicago to the spina bifida clinic at Children's Memorial. We did this for a couple of reasons but mostly because trying to arrange appointments with a handful of different specialists and making separate trips to U of C for each was too much. At clinic, Nate will be seen by all the specialists in one day. Yes, that makes for a loooooong day, but only one trip. And the best part is that the doctors work collaboratively with each other-something that seemed to be a chore at U of C.

At Nate's first appointment, he will be having a renal (kidney) ultrasound, a urodynamics test (bladder voiding), a muscle test and will meet with a neuro surgeon, orthopedic surgeon, urologist and physical therapist. I am most anxious about uro (worried about his kidney reflux-praying that is better) and ortho. I firmly believe it is time for Nate to start working on being independently mobile. Our PTs think that Nate is ready and shows appropriate signs for trying some high bracing and a walker. He still struggles bearing weight in his legs but has shown some new strength. Most of all, I have a strong mother's intuition that he is getting more and more frustrated with his inability to just go. And although preschool is a year away (just a year!) I want to be sure he is ready for that-whether it's in braces and a walker or in a wheel chair. That is something else I am going to inquire about at clinic, and I hope we will be ordering one soon. I have heard great things from other moms about how much more their kids are able to do in their chairs-and that they even started talking more and becoming more social and less shy. It's a big step for us, and Nate, but ultimately one that I know is good for us to take. Our clinic appointment is May 18th.



Here is a photo of Nate on his police motorcycle that his wonderful PT, Toni brought for him. He sits up so big in it! Not into the whole rocking thing yet, but we are working on it. Just sitting in it and watching one of his letter or word videos helps him practice strengthening his core. He is getting so strong!

Bring it on!

This little boy of mine is going to move mountains, I just know it! It's absolutely amazing what new things he learns from week to week. Because there is SO much, I am going to make a top 10 list.

10. He is now pointing. At everything. And it is too cute!
9. Nate is beginning to test his limits with us. And I couldn't be happier. Why, you ask? Because it's normal almost-two-year-old behavior! NORMAL!!!
8. He is still getting himself up onto all fours all the time-and recently started reaching for objects with one hand! HUGE progress!
7. He is a GOOD eater (and I am probably jinxing myself as I write this). Black olives, artichoke, cous cous, green beans, he eats it all!
6. His current favorite word is "car" pronounced "argh" kind of like a pirate. Every time we go "bye-bye" he points at every car he sees and says "argh!".
5. He can now get into a sitting position from the floor (laying) all by himself! He has been working so hard at this!
4. I'm amazed, but he can actually point to different objects as I count them. I'll say, "lets count the strawberries" and he'll point to each individual one while I count.
3. He is really coming along with his speech. His therapist couldn't be more impressed. Some new things he is saying (besides "argh") are nigh-nigh, eye, hi, neigh (horse), (oooo) cow, ba (sheep) and he can make "s" and "t" sounds.
2. While Ryan and I were away on a much needed mini-get away, his Nana taught him how to do the Itsy Bitsy Spider with his hands. It's so adorable to watch him try!
1. Today in PT he sat upright, unsupported on a stool for a long period of time. This takes a tremendous amount of balance and trunk control-and is a testament to how hard he has worked and how far he has come! We are so proud of our little guy! Here are some pictures from today:



kneeling and playing



pointing at something



sitting so big and tall!

That's right

That's my kid sitting in the corner.

It was his therapist's idea, actually. Instead of wanting to sit and play, Nate is always trying to get down to the floor so he can go. This makes it difficult to work on his sitting, which he is still perfecting. So we put him in the corner. It works like a charm actually. Especially if you put a mirror in front of him. Then you can sit back and watch him make funny faces.



Like this.




Or this.

We realized that he doesn't have a balance problem while sitting. Just an endurance issue due to his weak trunk muscles*. But he proved that he could do it, and sat happily and played for at least 20 minutes!

*The funny blue vest with all the velcro are his thera togs. It's something new we are trying to get him to have just a little more ab support than the kinesio tape we had been using. It's a royal pain to get on but it seems to be helping!

He's so close!

Nate is thisclose to getting into the crawling position all by himself. When he first started attempting, he could only get up on his right knee and would fall almost immediately. Now he's figured how to rack back enough that he can get up on his left knee, too! He spends a little time each day playing and exploring on the floor and we will often catch him trying to get into this position. And when I set him down on the floor, I purposefully put him in a 4 point position which he happily holds for a few seconds before falling (willingly) to the floor so he can army crawl over to whatever toy he just spotted. I think once he gets that full, strong motion of getting up and holding that position it will only be a matter of time before he starts taking steps toward crawling.



And now please allow me to brag a little (or a lot!) Nathan can now SIT UNSUPPORTED!!! There was a time when I felt like we would never get to this point, and then one day he was just doing it! By himself! It took a lot of hard work on his part but we are finally there. He still needs to use his hands to support himself once in awhile but as with everything else, in time I'm sure he won't need to. Being the paranoid mommy I am, I still put pillows around him-just in case (I'm terrified of him falling to his right side and landing on his shunt). Here are a couple recent pics of our big boy! We are so, so, so proud!

Sitting!

The day has finally come! Nathan has been getting better and better at controlling his "trunk" muscles and can now sit for short periods of time all by himself! We are so proud of him and can't wait to see what new things he is going to show us!