I apologize for the delay in the update and realize this maybe long. We thank you all for your ongoing prayers and support! 

Eli- he was home a few weeks ago for spring break. He literally had multiple doctor appointments every day of his break except one. So not the way he wanted it but we are so grateful we were able to fit most of his appointments during that week. 

Overall, Eli has been doing well . Unfortunately, He has had continual upper respiratory bugs and viruses since starting school. His biggest struggles post transplant are his memory, stomach, and breathing. The neurologist thinks his memory is just the result from the insult of his CNS-HLH and he may notice it more in college due to the demands vs his homebound school structure last year. However, she ordered a days worth of neuropsych testing this summer to reassure with his MRI this summer as well. He struggles with difficulty breathing with exercise. Again this is something that he struggled with prior to transplant. At that time when is heart function had taken a dip they thought it was related to all the steroid weight gain and the illness. Eli works out most days of the week and lifting doesn’t pose problems but cardio continues to be a challenge . It is most bothersome as he and friends like to play basketball and he just doesn’t have the stamina. So pulmonology has been consulting and he will follow up with them and cardiology this summer.

GI- well his stomach is still has the same. No hunger or thirst, reflux, and full out stomach pains etc but now also has a very bloated stomach. Sadly , his pediatric GI doctor stops Seeing patients at 19 so we are searching for a new doctor to transfer his care to . 

Eli wasn’t able to see his transplant doctor this round either as Dr. Patel has left UNMC. We are sad and so grateful for him! Eli and he had a great relationship! It was a bit sudden and we were not able to say good bye but do hope to communicate with him how much we appreciate him!  So, he will be advancing to a different group of providers that see adult transplant  patients when they are usually a few years out.  Eli received  another set of vaccines and will  now follow up with his pediatrician who we love and are so thankful that he will continue to see Eli for awhile yet!

And most recently, last weekend Eli developed hives all over his body, swollen lip etc.  we originally correlated it to green dye from a frosted cookie, however  it has continued to worsen every day since . We are trying to get a handle on that as the topical, antihistamines and steroid pack hasn’t calmed them yet. So we greatly appreciate your thoughts and  prayers  for that to resolve and nothing else comes up!

So as far as I go… wow! What a journey this has been, but God is so good I actually was able to put a few plants in this last week (after we had some landscaping done, makes sense I know🤣) Anyway, the spinning has been so intense, I spent lent learning how to continually surrender it to God.  For the last month or so, the spinning has only been when I move but you don’t realize how much you move until you spin every time! When we went to the surgeons in Iowa city last month, Dr. Gantz said any spinning, vision, and  balance issues that remain 4 months post -op, will be how it will be from here on out. So that had been hard to hear because at that time I was spinning miserably still, and was questioning if I would ever feel some improvement. But about a week or so ago it made a big jump 🙌🏻and boy was I ready to make up for some lost time. I still have spinning, vision issues and balance issues but they are getting better and I feel some normalcy. I have started to drive again short distances and this has brought control and “normal” back into my life . My incision still has some issues in healing. I get these suture abscesses that keep popping  up from the dissolvable sutures. Also,  the outside of the bone they removed during surgery is very painful. I assume this is just continued healing but will be grateful when that does completely heal. I am also so thankful that I have long hair to cover up the incision (sometimes the little things really do help:)

So I apologize for the long update but we are so appreciative of all of you!! We wouldn’t be where we are today without each one of you!! We definitely appreciate and feel every single prayer !! I have definitely felt carried at different times and I know it is all the prayer warriors out there ! 

Thank you so much!

#daybyday