Tuesday, February 24, 2009
During dinner one night last week Elizabeth got to build her own fishing boat. He was very brave to let her hammer. She loved it though and was so excited to show off her boat and the windows, made of tape. Just one of the fun activities they have done at dinner. Two days ago she got to make bookmarks and read books with the girls from Delta Kappa something... :) They loved her, even though she was in a crabby mood.
I was getting a bit frustrated last night because he was not looking very good or feeling very good and I was wondering why with everything else going on does he need to get sick. I understand that he has a low immune system which leaves him suseptable to everything, but I just think it's sad and frustrating. No matter how hard you try to keep everything clean or washed or sanitary, he still picks up viruses from who knows where. I don't doubt the Lord and his plan for Henry and I know he's gonna go through a lot of stuff, but I just wish he didn't have to go through so much. At four this morning Henry woke up coughing and then puked, and I was getting so frustrated I couldn't go back to bed so I parked him in the stroller next to mom's bed and I got into the shower, got ready for our 8:30am appointment and then laid down to cuddle Elizabeth for a while. She's sooo cute! What a blessing she is in my life.
Alright enough complaining, we're waiting for blood, and I brought a movie along to watch so the time might pass quicker. On second thought I wish I had my book. Oh well. Hope every one has an enjoyable day. Hugs to our friends and family!
Monday, February 23, 2009
Doctor visit this morning at 7:30am. Elizabeth was all in favor of not getting dressed, and I was too tired to care. I'm a bit congested and coughing so I get to wear the attractive face masks. :) Now to keep Henry from getting sick again. The Doctors were very impressed with Elizabeth's ability to say stethascope, and that she knew we used it to listen to Henry's heart.
The Doctors are keeping Henry on the same Chemo for another eight weeks. His bone marrow test showed the same amount of LCH, which isn't great, but it isn't worse. So his body is holding it's own with out much chemo. They are moving back to full doses of chemo every two weeks. And since we found that he's lactose intolerant, he's on better formula to help him gain weight quickly without problems hopefully.
The Doctor just called and said he does have a virus that supresses his counts, so they may have to treat that if it's still growing, which means being admitted to the Hosptial for a while... but also something that can cause low counts. All things that help us treat him more effectively. So that's where we are today. Elizabeth is hiding under the table with the camera, better go rescue it before we get some crazy pictures or a broken camera. :)
Saturday, February 21, 2009
Thursday, February 12, 2009
Wednesday, February 11, 2009
A bit of sad news; the bench that Elizabeth and Ronald now sit, is vacant except for a box of flowers. A few kids decided to steal Ronald McDonald off his bench and bust him up into small pieces! The news station came to report and although they saw the two kids doing it on camera, they were wearing hooded sweatshirts so you can't identify them. What a low thing to do! Elizabeth will be so disapointed! Every time we go in and out of the house she hugs and kisses him. And all the other kids that love to see him are now heart broken. Hopefully soon they will get another statue up on the bench. But for now, all that remains is a box of flowers in memory of our Ronald McDonald. :)
I've been trying to be more patient and understanding. Moroni talks about charity, he describes what charity is, and 4 of the 13 characteristics are about patience. If we have charity we are nothing and we can't have chairty with out having patience. Also Elder Maxwell linked patience and faith; we have to have faith that the Lord has a plan for us and patience to see it unfold. So my new goal is to work on having patience in adversity. I know when we pray for patience we get a bundle of trails to help us develop that patience, but I think most of the time we don't recognize the little trials of patience we have daily, unless we are really focusing trying to better ourselves.
Hopefully that made some sort of sense. I am working really hard at keeping a positive outlook and not necessarily expecting the worst. We'll see how it goes. I will be sure to let you all know what's happening when I find out. Henry seems to be feeling better today, less pain on his back. He was smiling and playing games with me, I think he even winked at me. :) I wish sometimes I could just know how he's feeling and understand what he needs. For now he endures more than I ever could I'm sure! And he does it with a smile most days. What a trooper!
Monday, February 9, 2009
We went to Olive Garden and Stanfords and went shopping at Pottery Barn and Target, don't think we're rich.. we just used all our gift cards. :) Joel and I went to Mandy and Tom's a couple times to play games and do dinner. Tons of fun...and every time Henry is around Finley he is way more talkative the next day, so I think we need to hang around him more often. :)
Right now Henry and I are spending our alone time in the Hospital. No, we weren't that lonely! Henry developed a fever this morning at 7am. So we didn't get to see much of Grandma and Grandpa Miner unfortunately.
They still aren't sure what is causing the fevers, but because his condition is "delicate" in their terms, they wanted to keep a close eye on him. On top of which the people in ER observed behaviors in him that they were concerned with, that if they had asked me about... wouldn't have caused any alarm. They just weren't really willing to listen to me. Oh well. I was convinced he was fine and that it was just a fever like he normally gets, but he got another one and while we are here we can find out if the RSV is gone or not. Besides which Henry really loves to flirt with the Nurses.
I did a first today... I left Henry with one of the Nurses while I went to RonDon to get clothes and some other stuff. He slept the whole time but it was still a bit overwhelming to do. Then the nurse and I got to talking and she played soccer at SPU and knew some of the girls at my school and some high school friends of mine. So we had a nice long chat and talked about sports and Portland and lots of other fun stuff. The nurses here are so sweet! And they all love Henry.
On my way back to the hospital room I got into the elevator with four of the UW basketball players here to sign autographs for kids.... and they were all really really tall... had to duck going through the doors, needless to say I felt short! It was great!
Elizabeth is doing wonderfully at Granny Annie's house. She is beyond excited to have her own room and lots of room to play. She loves her Uncle B, and seems to be doing well with out mommy. :) They might be heading back on Thursday but with all the snow it might be later than that. I'm hoping that Henry will be better by tomorrow night so we can get outta here. As much as we love the nurses and the food we love being in our own room! Well I do anyways.
We are suppose to have a meeting with the physical therapist tomorrow and talk about Henry's back. Hopefully we'll figure out what we can do to help him strengthen it or help his back heal itself.
We saw the occupational therapist and she did the tests for his cognitive development and he's doing phenominally in that area of development, it's just the physical stuff like rolling over and crawling and all that development stuff. I'm excited that we're finally working on that portion of his well being. Anyways.. he's having fun playing with the barf buckets.. don't worry they are still clean! What a cute little boy! Better get back to playing with him.
Much love to our family and friends.
Sunday, February 1, 2009
Our living room! I was so excited to get a rug! It made the living room so warm and comfy. I do miss my house incredibly! The warm fire, my kitchen and my bed! Some day house I'll return to you! And I'll love you forever and ever! :)
They were cuddling on mommy's bed having a nap and listening to Christmas Music. That was definately our favorite thing to do at home; crank the radio and dance around the house to Christmas music. Our favorite was "I Want a Hippopatimus for Christmas". And they would fall asleep with the music as back ground noise. It was really fun.
Dad got in last night and Elizabeth was extatic! She played with him all night. And Joel gets in this afternoon. I'm sure she'll be excited to see Daddy. I know I am!
I was looking at our pictures today and found a bunch that I wanted to post, hope no one minds. They aren't in any order date wise but they were really cute picks from when we were home for the holidays.