Wow! It’s been 6 months since our last post. Thankfully, that means that we have been busy living normal (well, our normal!) life, which has been great!
Ezra has been doing remarkably well. He is grown and changed SO much during these past 6 months. He is super smart, very stubborn (gets it from his mama), but also sweet and still loves to cuddle, which we don’t mind one bit! He loves water/pools, any type of ball, swings, music, and interacting with other kiddos (at PT they call him “Mr. Social”). In November, Ezra will return to Duke for his 2 year post-transplant testing (time FLIES!).
Here are some of the exciting highlights from the past 6 months:
- Ezra was successfully weaned off of all of his medications! He is now only taking 2 vitamins (since he is not on a normal diet) and a reflux medication (which is more of a precaution).
- Ezra got his port out! The port was a device in his chest that they could draw blood from or give his IVIG transfusion (an infusion that helps immunocompromised people fight off infections). Because his immune system has fully recovered and he doesn’t need blood drawn as often, we were able to get it taken out!
- Ezra also received 2 new pieces of equipment to help him continue to get stronger and on his way to talking. The first are little braces for his ankles/legs to help with foot positioning when he is standing. The second is a mobile stander that we strap him into, which helps with positioning, but most importantly strengthening his lower body. I’ll be sure to post a picture of him in it below.
- Ezra is now eating by mouth! He is not eating enough to be weaned off of tube feeds yet, but he has made remarkable strides. It was like one day, he just decided that he likes food! Some of his favorites are turkey, mashed potatoes, prunes, french fries (can you blame him?), green beans and carrots. The next step is increasing the quantity that he eats so that he can begin weaning off of his tube feeds.
- Our family was able to meet the mother and grandmother who got Krabbe Disease added to the newborn screening in Missouri, after losing their son/grandson. Immediately upon meeting them, it felt like family! We are so blessed to know them and are inconceivably grateful for the gift of life they have given Ezra in the midst of their loss.
Next month, our family will travel to New York for the annual Hunter’s Hope Symposium (check out Hunter’s Hope, they are an invaluable organization!). We are very excited to be able to spend time with other families who have a child who was/is affected by a leukodystrophy and to be able to connect with others who “get it”. We have already formed incredible relationships with other families and cannot wait to see those families in person and to get to know new families as well! We are not, however, looking forward to flying with an almost 2 year old…
Thank you all for continuing to pray for Ezra and our family. It does not go unnoticed and is so humbling!
Below are some pictures from the past 6 months:
Meeting the family who got Krabbe Disease added to the Newborn Screen in Missouri after losing their little boy, Brady. SO grateful to them and happy to call them family!
Playing in the stander
Enjoying a snack
Fun at the park
Shopping with mom
Enjoying his baby pool at the lake