What?!

Zoe is doing great. It feels so good to say that. She has been in rehab for over a week and has made some amazing strides. She is walking, has started on stairs, using both her arms almost equally (she has some left side weakness), and is close to getting her feeding tube out. We will probably be taking her home this Friday. I feel like this time she will be ready. Her spirits are also so much better. She is more interested in playing and having fun than anything else...as it should be. We take daily walks in the beautiful garden here at Emanuel, and yesterday she even played in the grass barefoot, picked flowers, and buried her stuffed animals in a pile of grass. She said "this is the time of my life." My heart was bursting because it was also the time of my life!

She has started on real food again after almost 5 weeks, but is not very interested yet. Her doc said that when young children don't eat for long periods of time they can forget how or no longer be interested in food. She hasn't forgotten how, but she would rather play with it than eat it...even lasagna believe it or not (her favorite). I think if we shut off her feedings through her tube more and give her the opportunity to get hungrier that she will show more interest.

Henry, on the other hand, has not been a happy camper. Last Tuesday he went into the ER with a severe headache and vomiting. He ended up spending three nights in the hospital with a case of viral meningitis. It started out as a simple intestinal bug that lasted a couple of days and then about 10 days later had infected his spinal fluid and turned into meningitis. This can happen when you've been under stress and are immune compromised. Zoe and I never had the intestinal bug that he did, and chances are it never would have gone to meningitis for us if we did have it. He just got lucky I guess. I took him home on Friday, and he's been suffering alone while I stay here at the hospital with Zoe. It felt very bizarre having him sick and in his own room two floors above Zoe, and trying to go between the two of them. The docs actually kept Zoe and I in isolation all day Wednesday before they determined for sure that he had viral and not bacterial meningitis (which is very dangerous and contagious). They were afraid that we might have it because of our close contact with him. He is still very miserable and feeling terrible...and there isn't a whole lot I can do to help. Zoe was actually going to be discharged last Friday, but the rehab doc opted to keep her for another week so she wouldn't have to be home with sick dad. So, hopefully Henry will be feeling better soon, it takes 7-10 days for the virus to process out of him just like any other virus. He has been having waves of feeling a little better, and then back to feeling terrible so it's hard to tell where he stands.

missing you all!
Colleen

It's Been A While....

Sorry for the lapse...Henry and I have been putting it off. Here's the short version: We took Zoe home from Harbor View on July 4th thinking yeah! Independence Day. We got semi settled at home with a visiting nurse and at home IV infusions of antibiotics. Two days later Zoe spiked a high fever and was vomiting, and we've been at Emanuel Children's ever since. She is doing better today, but we are NOT in any hurry to go home. She had the docs a bit stumped because she had all the signs of a major infection brewing (aside from the ones she already has), but the docs couldn't figure out where it was coming from. In the meantime, she had a new long term line placed, has been getting potassium, phosphorus, and amino acids in her feeds, physical therapy, occupational therapy, art therapy, and a group of docs that have been watching her like hawks. It's quite nice to have her oncologist overseeing things for us now, because in Seattle it was just a bit of a free for all with no real system of communication on any level. Her spirits have improved and she is getting a lot more active! There are a few concerns, but the big picture is looking a lot better...I'm praying that it stays that way. She is still on the tube feeds for another couple of weeks until her ENT says her pharynx is all healed. Zoe has been very tolerant of this...she really understands how important it is for it to heal completely and that it takes kind of a long time. She is being weaned off of the steroid and pain med which we are thrilled about! The less drugs the better. The infection in her neck appears to be under control, but only time and repeat scans will tell. She has cleared the C. Difficile infection in her gut, and has been taken off isolation so she can leave her room!!!! Very exciting for us after being trapped for a month wearing robes and gloves! Her gut is still healing, the colitis did a number on it, and she has been losing protein through her intestinal walls which cause her albumen levels to drop, this will heal in time.

Henry and I both proceeded to get sick these last few days...it all just caught up with us. We're doing ok, and thank goodness nana came to visit for a few days on her way back from Hawaii to Colorado. She has screwed my head on a little straighter for me, and given us a break. I will be so sad to see her leave, because I have no idea when we'll see her again. So, it's all about healing and getting stronger right now, and then it looks like we'll be going to Houston, TX for a couple of months of radiation. Loma Linda isn't going to be the right place after all it appears.

Try to keep you updated.
Colleen