New Plan

Henry's new blanket was given to him by a friend, Ashley. We needed to wash his blanket and he wouldn't part with it. We didn't really want to take it away from him during a rough day. So we tried this blanket and he loved it. Very soft.

This is the room I'll be living in for the next few months. New plan for treatment means Henry and I will be living in the hospital most of the time.

A final picture of his wonderful hair. With the new doses of chemo he'll be getting he'll lose his hair. I know he doesn't have much of it, but I really love his beautiful mohawk!

Seattle Temple Grounds

We went to see the Temple last Sunday after dinner. It was wonderful! So peaceful and Elizabeth really really loved the statues. It was next to impossible to leave we had to promise to go back again soon. Every woman statue was me and the man was daddy. There was another statue with a woman and three children. Elizabeth said look it's mommy and Elizabeth and girl and Henry! It was adorable. She played ring around the rosie with them.

This is a view from the garden area, with some sheltered paths. It was beautiful even with out blossoming flowers.

Henry was supposed to hold the mans hand but he couldn't reach. So fun to watch Henry watch Elizabeth. He sure loves his big sister these days.

I think she wanted to stay and play with them but when they wouldn't fall down and the end of ring around the rosie she wasn't sure they were much fun anymore. :)

One of these days I'm actually gonna have the chance to go to the temple here. Maybe while Joel is here I'll get to. Sure miss going.

Day at the Park

This was a few weeks ago, but this is our usual park, it's up the street about 8-10 blocks and Elizabeth loves it! She has really learned to love the merry go round.. which makes me ill but I had to get some pics of her!

Any open space and Elizabeth is running through it. She's so couped up at the house sometimes that she just has to run wild for a while outside. I love to watch her just enjoying being outdoors.

There are about four slides at the park but Elizabeth only likes the twisty one. :)

Incredibly she is strong enough to go back and forth on this thing with out falling down. When Grandma and Grandpa Miner came they pushed her back and forth on it and she loved it. Since then we always play on it when we go to the park. I have to push and run and catch and then push and run and catch.. :) Great exercise for me!

Hospitals make us worse?!

So on Wednesday last week Henry was throwing up, which I believed to be caused from a missed dose of Zofran. However, with fevers and vomiting they admitted him and took him off his feeds and put him on TPN which is basically nutrients and fat. So he doesn't lose weight while he is off his formula. All the fluids made his belly swell, which caused more concern and he was in great amounts of pain on Thursday. He wasn't able to move with out screaming in pain. Not usual. So they took x-rays of his abdomen and we did a really cool gut test, where they take quick pictures of fluid being put into his stomach and then watched where it went and how his intestines were working. All they found there was gas, constipation. However after asking them repeatedly about his back, they finally looked at the x-rays to see if his vertebrae were any worse. His fractures start at L1 and go to T9 or something like that and are getting much worse, to the point he can't sit with out much pain. Finally yesterday they gave him mirilax and he had some good dirty diapers and his tummy relaxed a bit and he was in less pain. Miracle... happens pretty much ever time we're admitted I've never seen doctors so excited about gas and poop!!! Last night he had some Oxycodone and Methadone with in an hour of each other... both basically relax you.. so together maybe relax you too much. He set off all the alarms because his oxygen levels were low, and they were so concerned we got more x rays of his chest and he was put on blow by.. a blue tube of oxygen that blows by your face, much better than the nasal prongs that go in your nose.
I know it's all a bit jumbled together... but in our eyes we were fine Wednesday got admitted and then got progressively worse each day. I keep telling myself that there is a reason we needed to be admitted. And I think we've figured it out. The compression fractures are much worse than they were in January and while his bowels are still acting up nothing is wrong with them, but we are going to have to sit down with the Doctors and talk about where we are in the treatment and that we'll probably need to vamp up his chemo treatment if we're gonna make any progress. He's been doing well but pretty much plateauing.
The only issue the doctors are left trying to figure out is whether or not to put him onto bone density drugs, or just to increase his calcium and Vitamin D to help build his bones back up. Steroids every other week is a bit much for his body and could be what's causing the back to get worse. On the other hand the Ortho guy feels that it's the LCH causing problems with the back. So once we get that sorted out we'll know what we're gonna do. They are gonna fit him for a brace to wear so he isn't allowing the vertebrae to slip or get worse. Hopefully. So in a nut shell That's what we've been doing the last few days.
Joel accuses me of making the blog seem like we're on a vacation... I like to focus on the good days rather than the bad ones... so when we get out and play and have fun I'm more likely to take pictures. I don't want Henry remembering how horrible he felt and how rough things were. We are so blessed and have so much to be happy about. Watching General Conference only built my testimony of that fact. While our trial seems insurmountable to others, the things they are enduring may seem overwhelming to us. The Lord knows us and gives us trials that He knows we can handle, he doesn't doubt we have the strength only we do. We learn from our trials we grow from them and hopefully at the end of all this my testimony will be firm and I will have learned what the Lord intended me to learn. I can not say enough that we have been so blessed and I know it's because of all our friends and family that are praying for us and putting little Henry's name in the temples. My heart is full of gratitude to the Lord and all of you! Much Love.

Hospital Life

So in this shot you can see his rash, and enlarged belly. We relate it to being pregnant. Poor little man. The big belly puts pressure on his back causing pain and his lungs which makes it harder to breath. Not the most comfortable.

After being on fluids for a day he swelled up really bad in his eye lids.. no where else.. just the eyes. He couldn't hardly open them.

This is his special stand.. too much going on for a normal size one, so they had to get the dual pump thing and he is hooked up to machines for food, monitor his oxygen level and meds and everything else!