If raising a normal child takes a village, raising a sick child takes an army.  You all have been there through each of our skirmishes.  From battling a ferocious and aggressive pneumonia, to the battles with insurance, to the ongoing battle to keep Idan safe and healthy despite his weak immune system, with your help and encouragement, we have fought and beat enemies small and large.  In a couple days, we will face Idan’s disease head on.  Tomorrow, Idan will undergo a minor surgery to place his central intravenous line.  We will check into the hospital on Wednesday at 8 a.m. PST, to begin chemotherapy.

Let this be the end of our war.  Let this be the beginning of a new era – an “Idan Chadash – עידן חדש” – of health and longevity for our little Idan.  Let Idan finally be able to enjoy his childhood and go to the playground, play in the dirt, and visit his cousins without fear.  Idan is strong, and we have a powerful, massive, and loving army behind us.  Idan’s Hyper IgM must be feeling pretty scared right about now, because we have our war paint on and our weapons drawn – and we’re about to kick some serious Hyper IgM ass.

Couldn’t help but share this ridiculously cute video of Idani playing earlier today =)

Akiva and I let out a deep breath today.  The results from Idan’s CT scan of his lungs and the ultrasound of his liver came back, and for the first time in what seems forever, we heard the word “normal.”

For those who have been following Idan’s story for the past few months, you may remember he had a severe case of pneumonia (called PCP) in April that wreaked considerable havoc on his little lungs, and his liver was inexplicably enlarged at the time as well.  We were told by the doctors it would be a very long time before his lungs fully recovered, as there was so much scarring that each cell of his lungs had to re-grow.  We were also told that the two most significant concerns and risk factors going into a bone marrow transplant for Idan’s disease are lung and liver problems.  Knowing that Idan’s liver and lungs are FINE means he is strong, has fully recovered from the event last spring, and is more than well enough for transplant.  We could not be more relieved.  As long as we can keep him from catching a cold, virus or infection in the next week, we will be admitted on Wednesday, October 16th.

With only a week to go until the transplant begins, we have settled into our new apartment that we will call home for then next few months, and Idan is loving his playroom.  We already received several gifts from strangers and friends to help entertain him and for that we are tremendously grateful.  If only we could bottle Idan’s sweet smiles, giggles, and squeals!

On that note, we want to especially thank the Seattle community that has taken us under their wing.  Members of several congregations in the city have contributed household items to help make our stay here easier, and we are very fortunate to be surrounded by such generous people.  I’ll share one example (of many) which has brought tears to my eyes.  We received a beautiful sheet and comforter set from a young woman who just had her bat mitzvah.  She told her mother she wanted to help our family with some of her bat mitzvah money, and insisted on picking out bedding herself, telling her mother that “Idan’s parents shouldn’t have to worry about picking this out, they are with Idan.”  Whoever you are, thank you.  Idan loves rolling around on top of the comforter in the morning before breakfast, and the bedspread instantly made our new bedroom feel cozy and warm.

All our love to all of you back home and around the country and world who have been cheering us on and giving us moral support!

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 more 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

It’s only Wednesday, and already we’re all feeling a bit exhausted.  Since we last updated you all, Idan has had a few more days of testing.  Last Friday, he had his echocardiogram and EKG.  Yesterday, he had a blood draw and we had conferences with the pharmacist, social worker, RN, and child life specialist.  Today, he had a CT scan, another echocardiogram, an infectious disease appointment, and a failed blood draw that we’ll have to repeat tomorrow.

Today was by far the most difficult day.

We woke up at the crack of dawn for the CT scan, and after another night of fasting, we brought Idan t the hospital at 7:30 in the morning.  He was a better sport about it than we were, smiling and playing all the way to the hospital.  We and Idan’s team decided that it would be easier on Idan if he was asleep for the CT scan, because it would mean less restraining during the scan and that we would also be able to easily finish the echocardiogram (which was halted last week when it became clear Idan was not happy with sitting still for so long), and place an IV that could be used for the blood draw in the afternoon.  The advantage with doing all this in one shot while Idan is asleep is obviously to avoid unnecessary trauma for the little guy.  Unfortunately, the sedative did not do its job very well, and Idan was awake (albeit a bit loopy) for it all.

So we had a very long morning of trying to entertain and restrain Idan while he underwent a CT scan and then a second echocardiogram.  Poor little guy wanted to play and socialize and is wondering why he can’t move his hands or turn on his stomach.  But that was the easy part.

After the two tests, the anesthesiologist came back into the room to place the IV.  Under our previous plan, Idan would have been fast asleep and would not have noticed a thing.  But Idan was wide awake, and starting to realize he had been fasting all morning.  The needle went in, but no blood came out.  So the needle went out and back in again and again, but no success.  Eventually, we gave up and decided to go to the clinic for the blood draw without the IV already placed.  (For those of you who are confused why we’d have the IV placed at this time, it is because we were at the Children’s Hospital, which is more accustomed to drawing bloodfrom babies Idan’s age than the clinic on the other side of town.)

Then, after feeding Idan, we went to our next appointment with the Infections Disease specialist at 11, and afterwards headed over to the clinic for the blood draw.  Again, the needle went in and out, this time in both arms with no luck.  The day ended with three limbs dotted with little holes, and no blood drawn.

Each time, poor Idan could not take his eyes off the needle digging underneath his skin for a vein.  Worse yet, he could not understand why his mommy was an accessory to this invasion.  Such is the case with every procedure that is done.  The parent participates in each procedure to keep their child calm and to make sure the child does not move.  But what happens when the child is poked and prodded and restrained over and over and over again?  At some point does the parent, who at one point may have comforted and soothed the child, become the enemy?  Will my tight squeeze soon be associated with pain and discomfort instead of love?

These are the thoughts and fears that ran through my mind as I watched the needle dig under Idan’s skin – no pun intended – all in vein.  As I pressed my arm firmly across his small chest and sang Idan a lullaby, I looked across the room to Akiva who was sweetly distracting Idan with funny faces and multiple toys.  How lucky Idan and I are to have Akiva in our lives, making us both laugh and smile our way through this ordeal.  This afternoon, after all the tests were over, Akiva let me have a good cry while he entertained Idan in the other room.  When I calmed down, I walked into the room to hear Idan’s giggles and watch them sharing a bag of Bamba, their favorite snack.  I am glad to have my answer, and hopeful that tomorrow will be a better day.