Last week was a difficult week, as you might be able to tell from the last couple blog posts, but this weekend brought plenty of sunshine, warm weather, and great company. Energy restored, we are ready to face next week again.
Before we get into the testing, Akiva and I wanted to share the good news that we will be moving into an apartment about a mile from the hospital. Idan will have his OWN room. Since he won’t really get to enjoy it until after he is discharged (sometime in December or so), we have plenty of time to make it into an Idani-Wonderland. He’ll be in total isolation after discharge, unable to leave the house except to go to doctor appointments, so we are working hard to make a playroom for him that will allow him to climb, explore, and discover new things every day. Any ideas are very appreciated!
Pre-Transplant Testing Update
Since we last wrote, we had two mor
e days of testing. On Thursday, we had another consult with the transplant doctor and her team, and they took a nasal swab from Idan to test him for viruses. He loves the team (as do we), so he was very happy through this consult. He even allowed them (for the most part) to squirt water up his nose and poke around for a second to get a good swab. We then went down to the blood clinic, and once again could not seem to get blood drawn. Three more pokes in his arms, zero success.
After a couple hours break, we went to see the physical therapist to get a baseline of his motor skills and development. For the very first time, Idan got to crawl around and play with toys in a hospital setting – and he loved every second! He made a new friend with the physical therapist, and found an old favorite one – a large blue ball, just like the one he has back home. Idan’s eyes and mouth opened wide as he picked up the ball and gave it his signature toss – and then another and another and another. Nothing better than watching him play.
On Friday, we had to go to the hospital to complete (well, re-do) the blood draw for the third time. Akiva and I held our breath as the needle went in, hoping and praying that this time it would work – and FINALLY, the blood started running. Never thought in my wildest dreams that I’d pray for Idan to bleed, but when the tube started filling up, I could finally breathe a sigh of relief that it was his last poke for the week and his little limbs could have some rest.
One more week of testing to go, and then we’ll be admitted for the actual transplant on October 15th. All our love and thanks to you all who have kept us going and given us strength to face what’s to come.
– Amanda, Akiva & Idan
Speak with occupational therapists, speech therapists mand physical therapists about recommendations that they might make to put in Idan’s wonderland as every play opportunity will also represent an opportunity to strengthen and stimulate Idan’s development which at this age grows in leaps and bounds. Things like play doh, little tykes slides with a few steps for climbing, balls, are all examples that are multipurpose.
A mini trampoline that is age appropriate and safe may also be good when he is ready. Think multisensory.