Everyday life – post transplant.

At almost 17 months post transplant for Eli and almost 9 months for Ella we are getting used to life back home and as normal as it can be.

With Ella being the less affected one before transplant she is definitely the one with the least amount of MLD symptoms. Before heading to Italy we never noticed anything wrong with her and as she was in Pre-school she seemed to be thriving… And as normal as other little kids her age. Now almost 9 months later and here is pretty much a day in the life of Ella.

Ella wakes up pretty moody and we don’t ever know what to expect from her. She eats well which is a huge plus compared to Eli! She absolutely loves Kindergarten and looks forward to school every single day! She has the best teacher… Mrs. Grube …the same one Evan and Eli had. The only thing she wishes she could do is sit crisis cross applesauce…it really bothers her that her legs can’t do that. Right now the only PT Ella is getting is when her legs are rubbed and stretched at home. She is taking lots of vitamins and luckily she has been very healthy post transplant. It’s time for flu shots but she can’t get one until she is at least one year post transplant.

Ella loves to read, do art, and she loves her stuffed animals. She seems to be enjoying life as much as any 6 year old and for that we are very grateful!!! She wants her hair back but soon enough. Eagerly anticipating her one year checkup in Jan to see what her MRI looks like!

Eli is 16 and a half months post transplant! What a blessing to be this far out and to see him running, walking, playing and trying to be as “normal” as he possibly can!

Eli is struggling …things are not easy for him. When we were last in Milan he was falling a lot but I attributed it to the uneven sidewalks in Milan. All the way to the hospital there were many bumps along the way and I had to believe that was the reason for his unattractive bloody knees. I was eagerly anticipating getting home so I could see how he was at home. Thankfully his knees are healed and maybe only a few falls in the last couple of months.

Eli struggles with personal hygiene issues, buttoning his jeans, holding a spoon without spilling his milk…. His temper is not normal for a 9 year old and his emotions are very up and down. The worst part of MLD is Eli realizing that there is something wrong with his brain. I can’t begin to explain how it feels when your son looks at you and says “my brain just doesn’t work like it used to” ” why doesn’t my brain tell me everything anymore?” “Everything is all jumbled up” This is heartbreaking to say the least, especially when there is nothing that can be done.

Eli gets lots of PT and OT, he has an amazing group of teachers and staff at Oaks who are there for him whatever he may need. Eli gets massage two to three times a day with special oil. He gets his skin brushed to help with his nerves and stretching is a must. His heel cords feel much more relaxed than I ever remember. Thank goodness he really has been healthy since transplant and that is such a blessing!!

Focus needs to be kept on the fact that he can still do so much despite his struggles… That we are oh so grateful for Milan and the team of amazing doctors who have taken such good care of us…for Telethon who without them we would never have gotten this opportunity.

The anticipation about waiting for Jan/Feb is hard to contain sometimes. Eli’s 18 month post transplant check up and Ella’s one year! They say hopefully between 6-18 months is when we should see the disease slow down or prayerfully stop! Until then we will keep them as busy as possible and hopefully enjoying life will make the time go fast so not to worry about Milan in Jan!!



~ by Rebecca on October 20, 2014.

One Response to “Everyday life – post transplant.”

  1. Praying and thanking Jehovah Rophi!

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