Shriner Hospital Update - March 20

We made it! Our last minute 2015 Spring Break trip was a success! We went back in to see your pediatrician the day before we left because you were still coughing pretty badly and had started pulling at your ear again. You finished the antibiotics on Friday so that was the most concerning thing - that your ear was still bothering you - and I didn’t want to wait until next Monday to get you an appointment. Thankfully, she was able to squeeze you in that afternoon. And let us know you had a double ear infection. They increased the dosage of your breathing treatment to see if that makes more of a difference and put you on a different antibiotic; thankfully we were able to pick up both of them before we headed out!

We got everything loaded up and left around lunch time on Wednesday (after picking up your medicine and running three other errands…) We stopped at Chick-Fil-A for lunch on the way out of town and you got super whiny when you saw all of us eating…and then I gave you a french fry and you were perfectly happy:)

Mmmm - waffle fries make it all better!

We got into Houston and settled into the hotel and then headed off for surprise number one for sisters: ice skating at the Galleria Mall. They had a great time with that, but you were not too happy to be sitting on the sidelines. You kept reaching toward them through the glass and signing “please” and looking up at me and smiling (like that would win me over…). So sorry Baby Girl - maybe next time! 

Please, please, please let me go!

There's Daddy!!! 

And Sister too!!!

We ate the Rainforest Cafe and the first time the “thunderstorm” came through you kept looking up at the flashing lights and then back at me with a really confused look on your face. Again, when our food got there you kept reaching and reaching until you got a french fry. Then you had to have another one for the other hand. Happiness

Serious french fry business...

Thursday morning we got up, got everything ready to go, dropped Daddy and sisters off at the Metro station to go to the zoo (again, next time you can go too) and then headed to Shriner. We got there a little bit early, spent 45 minutes filling out paperwork and giving them your medical history, then they let us know that our clinic visit was at 1:00…so we had about 45 minutes to wait. I tried to find a quiet place for you to get at least a short nap since you had been signing sleep since we left the hotel, but there was way too much new stuff for you to look at to even consider closing your eyes. Instead you ate a cookie and got stuff all over your shirt for the day. 

They finally called us back and did an upper extremities evaluation. They looked at your shoulders, measured the angles of your arms, elbows, wrists, etc. to see how much you could bend and straighten them, looked at your fingers and played with those joints some. You were so patient with them…until they took away the speaking valve case that you had been playing with. You were NOT happy with them then and would NOT let them play with your hands anymore.

They said everything looked really good and they don’t foresee any need for any type of surgery on your upper extremities. There are a couple of different stretches they showed me to work on your finger joints to help give them some more flexibility and range of motion, but other than that were thrilled with how much rage you already have!

Then we waited about 45 minutes for the lower extremities people to come visit. They did a little bit more extensive of an evaluation, asked a TON of questions about where you were at when you were born and how much has changed, what we’ve been working on, how well you do with different things, how mobile you are, etc. They bent and stretched your legs, ankles, feet and you had no problem with them (they gave you stickers to play with), watched you scoot around in a circle over and over on the table to get to whoever had the sticker you wanted, and talked about a lot of different things. 

You will eventually have to have surgery on your feet - but they said that would be between three and five year old, once your development has slowed some. They were thrilled that you can scoot in a circle but want us to continue working on you learning how to scoot around on your bottom (since you’ve made it perfectly clear in the last month or so that you are DONE with that whole crawling thing) and being more independently mobile. The doctor did want to go ahead and start prepping your feet so he ordered some new splints that will start stretching the skin and tendons at the top of your foot so we went and got you fitted for those. They will pull down slightly on your foot (as opposed to holding it straight like the ones you have now do) but they are going to put a wedge on the bottom of them since they do want us to continue working on standing and pulling up.

Print for your new boots!

After the fitting for your new boots we went to get some glamor shots done :) They take pictures at every stage of the process so we have a record of the progression that you’re making. By that point in the day you were done (and kept signing finished to everyone) so there were no smiles to go with the cookie and chocolate stains (you apparently really like chocolate covered pretzels) that were all over your shirt. 

So from here: we will go back to get your new boots in three weeks (just a quick day trip) and then do follow up appointments every four to six months until they say we’re done. We are being put on the Monday schedule so we’ll be going up on a Sunday, appointment Monday morning and then head back that afternoon for most of the appointments going forward. They said to keep doing what we’re doing and working on what we’re working on; you are doing great and making really good progress so they’ll just keep monitoring and make suggestions as we go.

We headed back to the hotel and you got to rest for about an hour before we went to dinner. I’m really surprised you didn’t crash completely since you hadn’t taken a nap ALL DAY, but I think you were too excited to see Daddy and sisters. When we got back from dinner though, you were out of it about five minutes after I laid you down! You slept very, very deeply - your heart rate kept dropping down below the set level so your alarm went off a few times - fortunately, everyone else was so tired they slept right through it also! This was the first time in a long time that you didn’t wake up once coughing also.

We met Pops and Gigi for breakfast on the way out of town and then hit the road - and traffic. We’re currently stuck between about four 18-wheelers on I-10 and you are way too interested in the noise that Little Big is making in the back seat to fall asleep, although you desperately need a nap and have been saying so since 9:30 this morning. I love you Baby Girl - keep fighting and keep growing!

Your favorite toy for the trip home.