Doctors and Needles

Last month we were able to get Bryce in to see a Physiatrist (a doctor who specializes in physical medicine and rehabilitation). We left home at 5 a.m. and made the four hour trip to Primary Children’s. I just have to point out that it only took us FOUR hours to get there! Normally it takes five or six hours because we have to give Bryce frequent breaks from his car seat. Luckily Bryce didn’t wake up until we were 10 minutes from the hospital and he was NOT HAPPY.

We got him out of the car as soon as it was parked. I took him inside to change his stinky bum (thankfully it wasn’t a blowout) while Jus put the wheelchair together and met us inside. The clean diaper helped Bryce relax a little . . . until we tried to put him in the wheelchair. He obviously needed a break from sitting, so I ended up carrying him across the hospital to the appointment. This boy is making me buff!

The main purpose of the appointment was to check Bryce’s muscle tone, specifically his right arm which is spastic (tight). Unfortunately Bryce was still upset by the time the doctor walked in. When he is upset his muscles get even tighter and he won’t let you move him AT ALL! She had to ask Jus and I a bunch of questions to get a better idea of how Bryce normally is. As we came to the end of the appointment Bryce was almost asleep so the doctor tried one more time to move his arm. He let her move it once, then woke up enough to make sure she couldn’t do it again (he’s definitely getting his toddler attitude).

We didn't get a picture of me carrying Bryce around Primary's, but if it's nap time he'll get very angry if  he has to fall asleep in his wheelchair . . . He's a bit spoiled.

Based on what we discussed and what she was able to observe, she recommended that we try giving him Botox injections in his right bicep and wrist. The Botox relaxes the muscle it is injected in. It’s not a permanent fix so the treatment will be repeated regularly (about every three months).

I’m not going to lie, I am a bit nervous about the injections. Don’t get me wrong, Jus and I both feel it is worth trying, but it sounds painful. Like all moms, I hate it when my baby is in pain. In fact, I may have fainted when a group of nurses put an IV in Bryce. To be fair, it took them 45 minutes of poking, prodding and digging the little needle around in his arm (we all know how bad that hurts). They even had to call in back-ups for their back-ups. On top of that they had to do an Ultrasound to find a really deep vein because they had blown a few in their attempt. It was TORTURE! Once they finally got the IV in and I was able to calm Bryce, I went down. Luckily Jus was there to catch me before I damaged any equipment. Needless to say, it was an emotionally exhausting night (this was about a year ago).

Anyway, we feel the Botox will be very beneficial for Bryce so we will try it. Now we just have to wait for insurance approval. In the meantime, the Physiatrist also sent in a referral for Bryce to be seen at Shriner’s! We’ve heard how wonderful Shriner’s is and are excited to be going there in the near future.

The muscles in his right arm are spastic, so it is usually in this position.

Speaking of being excited, yesterday Bryce took a little nap after the morning session of General Conference. Jus and I stepped out of the room for just a second when we heard him make a noise, the one he makes when he wakes up because a round of spasms is starting. If he thinks he’s alone when the seizures start he gets very frightened, so I ran back to him to help him through those mean seizures. Instead, I found him with the BIGGEST grin on his face and he started giggling! It is pretty much impossible to get him to laugh, we’ve only heard it a few times. I grabbed Justin’s phone to record this extraordinary moment. By the time I was able to start recording he was almost done laughing, but I did manage to get his last little chuckle! It’s such a heavenly sound, full of pure joy! Now I just have to figure out what he dreams about so I can get him to start laughing while he’s awake.