Jazlyn's Journey

Just some pictures from the last two days

Jaz is doing much better today! She slept through the night and she's tolerating the feeds just fine! We should be able to go home today. Woo-hoo! Thank you to all that prayed for Jaz and for those that helped financially, emotionally, and physically (like, cleaning my house, the two know who you are!). We couldn't have gone through this without everyone's support!

Hi everyone! Jaz is a busy girl this week! We have a GI study tomorrow morning at Egleston in Atlanta. The surgeon wants to see where the reflux is coming from. If up top or from the stomach. If it's from the stomach, we may have a Nissan fundoplication in the future.
This Friday Jaz is having surgery to remove her adenoids, have tubes placed in ears and have her g-tube placed. I fought this year so that Jaz wouldn't have to get one...but with her aspirating and still not swallowing correctly, we decided it was time. Jaz is only 19 lbs, and doesn't like to drink juice or water, so controlling her diabetes Insipidus has been hard. So getting the g-tube will also help us manage her DI. I rather see my baby healthy and full, than thin and struggling.
The surgery will be at Egleston Childrens Hospital in Atlanta. We will be there overnight, possibly two depending how Jaz does.
Other than that Jaz has been doing well. She's a fiesta little girl that loves to walk and play ❤️

It's Jaz's birthday!!! Happy birthday sweet girl! Here's to many more 😘

Hi guys! Jaz had a follow up with the ENT in Atlanta. They did a scope in her nose and in Franky's words, her adenoids were HUGE, and the scope revealed she has severe reflex.
So we're scheduled for surgery January 29th to have her adenoids removed and have tubes placed in her ears.
She also saw the GI Doctor. They took away the Zantac and have her just on Prilosec but upped the dosage. She'll have a swallow study done to check for aspiration. Feeding tube was discussed but no decision on that yet. They also changed her medicine for constipation.

Here is the flyer if anyone needs it.

We have set up a new site for Jaz. Please help spread the word by liking and sharing. www.hopeforjaz.com

Getting marked for her wires

So, Jaz had a sleep study done last night...and it was rough...
The technician did say she didn't see anything bad, but Most of the time Jaz woke up crying she had dreamt. So now I just have to wait for the results from the neurologist. Hopefully we get some answers because we are tired!

Hi everyone! Just a little update on Jaz. She finally got her AFO's to help her stand correctly, yay! We are also waiting on X-ray results of her adenoids. I took her to the ENT yesterday and he confirmed her tonsils are 3+ enlarged, which is very big. I googled what that meant and it's from a scale of 0-4....so yea, they're big which explains a lot. If we have surgery to remove the tonsils and adenoids we'll have to go to Atlanta for the procedure.
Jaz has been progressing some. She's reaching out for stuff more which is great. She still can't quite open her hands to grab stuff, but when she wants something she throws her hand on it and tries to grab a hold of it.
She loves to stand and knows how to put one foot in front of the other to walk. I'll post a video of her one of these days 'walking' now that she has her AFO's.
Thank you all for keeping up with our Jaz! We love you all!

Hi all! Wow, Jaz is a year and a half now. Time is flying by! In this short time, she has seen many specialist and has had her share of shots/blood drawn. With that said, we found out last two weekends ago Jaz has diabetes insipidus. It's a condition where not enough anti-diuretic hormone is being produced, so her body was flushing all her fluid out and she was chronically dehydrated...we had no idea. We didn't see the typical signs of dehydration. The only indicator was her chronic bad breath, but the pediatrician told me it was nothing. But thankfully because of Dr. Fearon, we were referred to the endocrinologist and through blood work that's how they caught it. She'll be on medication the rest of her life, desmopressin. Currently, we have to inject morning and night with the medication. But once she's older and able to swallow pills, we can put her on the pill. We're still doing lots of therapy. Going to discuss Botox injections with the therapist within these next few weeks.