He's getting stronger...

Omg...so Jack kept pulling my hair (he does this all day long!) so I went to put him on the floor because he just kept climbing on my lap and grabbing more hair (while laughing!). I tried to put him down and he locked his legs and proceeded to stay standing, back to the couch. He then pulled himself up onto the couch using his arms and core while bending his legs (back to couch)!!!!!

Check out this cute video from a couple of weeks ago!

Jack counts

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Rare Disease Day

Ouch.

Well, it could always be worse. Jack has a yeast infection at his g-tube site. Ouch! Luckily, we were able to have it treated over the phone and by emailed pictures. 

One week of triple antibiotic and nistatin powder and a special pad to cover. The pads were mailed from St. Louis Children's and then a larger supply was shipped from our medical supply company. We have to apply the medicine four times a day. Everything is already looking and feeling better!

I have some pictures to share...

I'm super excited to share them!

At Target in their special kid cart.

 

Jack got his hair cut in a salon for the first time! And...

He did great!!!

We are so proud of Jack!

He calls it a birthday party...

Before I explain the title of this post, I have to rewind just a bit because we've had MANY appointments since the hospitalization.

Nephrology (kidney): Everything is great with Jack's kidneys. His ultrasounds show minimal change and the medication is doing a good job at keeping his "kidney chemistry" under control. Basically, Jack is high risk for kidney stones (hypercalcemia is a term used when we discuss his chemistry). He takes a medication called Cytra-K, which is Citric Acid and Potassium Citrate. Jack has been moved to yearly visits!

Pediatrician: Jack is already gaining back the weight that he lost while sick!

Pediatric Surgery: This appointment was for Jack's g-button. The surgery team placed the tube and they also care for it. I brought Jack to them because his stoma (the hole) has been smelly and red and white. Jack has granulation tissue, which is basically tissue trying to heal itself, and it was treated with silver nitrate. Jack's stoma leaks often and it's very hard to keep dry. The moisture irritates Jack's skin and he finally needed another treatment. All is good there.

Endocrinology (bone growth, internal issues that I don't even know how to explain and I'm writing this on my phone so I'm not going to share a link):

Jack has been followed by Endo since he was 1. We did a trial of Grown Hormone to see if it would help Jack grow and also help with his overall strength. It didn't. Jack isn't growth hormone deficient. He is, however, IGF-1 deficient (insulin based growth factor-1). We skipped the injection therapy last year because Jack was in a good spot and I didn't want to irritate him and go with the risks of these injections (lots of glucose testing). Of course, now that I'm considering it, the one company that makes the medication isn't making it!!! Jack still has osteopenia and has been placed back on a vitamin D supplement. We skipped all testing for now since we can't treat growth at the moment. Back in one year.

GI: we discussed diet, vomiting, the esophagus, and medication. It's fine that we removed grain and fiber from Jack's diet. There might actually be a cause for the vomiting other than a possible virus-cyclic vomiting syndrome or abdominal migraines. There is medication that could help with this but the doctor needs to see some brain imaging first to rule our something there. The MRI is scheduled in March. A new upper endoscopy needs to be performed to look at the esophagus and the condition of the eosinophilic esophagitis. This won't be done until Jack is in the operating room for something else. We can wean Jack off of the Prevacid as a trial.

Now...why I actually started writing...

Jack had his Valentine's Day party this morning and Katie and I attended. This is the first time I went to a holiday party for Jack. It was fun! He played games and had fun! He had a snack. I brought Katie with and it was great to see her interact. When I used to bring Jack to Evelyn's parties, he was stuck in a wheelchair stroller and I had to be with him the entire time. Katie played the games and sat at the table with the other kids while I tended to Jack. He even maneuvered his wheelchair around a corner to get to me!

He's a Star!

Check it out!!!

https://www.facebook.com/StarlightChildrensFoundation/posts/10152250194417904:0