Tuesday, February 24, 2009

Peace & Quiet

A rare occation, both asleep at once. I wasn't quite sure what to do with myself. Actually I went out shopping while mom stayed with the kids and when I got back this is what I found. Granny has the magic touch. The pillow cases were made by a group called Con Kerr Cancer or something like that, and they had tons of pillow cases so we let Elizabeth pick one out for her and Henry. She loves her train pillow case.

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.

Vampire Baby

We're in the clinic today getting more blood. I really wanted Henry to be a Vampire for Halloween, we just didn't get it together in time. He gets more blood than anyone I know. I am not sure how much of his blood is actually his! The Doctors started him on a new Hypoallergenic formula, no lactose, and thought it would help. But he spent most of the night puking and filling his diaper. yuck. Poor little guy. Doesn't help that he's got a cough, but he usually goes a few hours and then cough cough puke! I think we're gonna have to find a new formula.
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. :)

Scrapbook stuff

These are the three bags of goodies I got from an angel! I'm so excited to use them in our scrapbooks. Thank you so much. Wish I could hang out with my neighbor and scrapbook for a few hours! :) Miss you guys. Much Love!

Saturday, February 21, 2009

Watching Cartoons

Henry's occupational therapist gave us a block of foam for him to sit on while he was up and active. It's suppose to help him feel his feet on the ground and eventually put pressure onto his feet again. He and Elizabeth were sharing animal crackers and watching Spongebob.

Busy Busy!!

Sorry to all those keeping up on the blog! I know it's been a long time since I posted anything, we were with out internet in our room and in and out of the hospital. Elizabeth got back from Granny Annie's house on Friday the 13th. Waiting for Elizabeth was a big Valentines Surprise. Ballons, gifts, Valentine's Cards, the mail box from Laci, candy, coloring books and crayons. She was sooooo excited! I didn't take a picture before the ballons came down because I had no batteries for my camera. But it was very memorable! I think Elizabeth will be a lover of Valentines Day too.
We have discovered that Henry is lactose intolerant! This is ironic because when Henry was initially sick back in July the Doctors were convinced that the cause of his illness was Goat Milk or the goats themselves. Those that cannot handle the lactose in cows milk very often can drink goats milk. Won't those Doctor's be surprised! We havne't tried the goats milk yet, we have tried soy and so far all is well. Because the Doctor's had Henry on constant feeds he was always really bloated and stopped up and in a lot of pain, so they were giving him more laxatives every day. This helped unstop him but didn't help his body absorb any of the nutrients from the formula. So we stopped the feeds until he was no longer sick to his stomach and more comfortable. However, we fed him some ice cream that pretty instantly set off more bloating and pain. At first Henry didn't like the soy milk, after watching me drink it, he's all about it! Anything that I eat, he will eat.... smart kid!
Although I feel a sense of relief in figure out what was causing his constant discomfort, I also feel a sense of guilt for not realizing the problem sooner! He's definately feeling better, much more active and happy. The only problem we have now is figuring out what to feed him. He's a very picky kid. One step at a time, but I feel like this is a huge step for us... a great big one forward! Yeah For Henry!!!! Now we work on physical therapy and chemo. Monday we meet with the Doctor's about his bone marrow biopsy results. We will be deciding whether to continue the treatment he's on or moving to another type of Chemo. They are worried the treatment he's on isn't calming the LCH enough. His hematocrit is always low, that's his red blood cells, along with his platelets. Taking him off of the home chemo didn't boost them at all, which means that the LCH is possibly too packed into his bone marrow. But we'll talk to the Doctors and see what they have planned for us.
I hope that all our friends and families are doing well. We love you all and miss you so much! I have the blue cable to hook into the wall now, so we should have internet from now on... I promise to do my best keeping the blog up to date. Thanks for all your prayers and support!

Thursday, February 12, 2009

Sleigh Ride

Joel and I and Ryan and Laci all went to Chena Hot Springs a year ago yesterday. It was so much fun! We Stopped at Santa's house but it's only open on Sunday's or something weird like that. Joel and I decided to take a picture in the Sleigh. Thanks Laci J for your skilled photography! Miss you guys...wish we could have gone again this year.

Breaking Out

Henry is being released today yeah! The Orthopedic Doctor came in to talk to us about the fractures in Henry's spine; said they are really small not anything to worry about right now, and it should be something he will grow out of, or his bones will grow over them as he gets bigger. They will probably take periodic xrays to keep an eye on things, but nothing permanent. We have a follow up appointment with the Doctor on the 26th, but in the mean time we don't have to worry about him sitting on his own or anything. Big relief.
The team came to do rounds, after discussing his fevers, and his counts and what not they said we could go home, the doctor isn't excited about us leaving when he's still having high fevers, but we have no cause. However, when the Doctor came into the room, I called Henry's name and scared him.... he was playing in his POOP!!! UGH It was so gross! It escaped his diaper, the Doctor thought it was a bit too loose, so they sent off a sample to be tested and hopefully they will find the cause of fever or not. Either way we go home and have follow up tomorrow. I'm excited to get back to the RonDon, but at the same time, being in the hosptial is a bit more convenient when he has a fever in the middle of the night. Pray hard he doesn't have anymore fevers!!! Or that they find the cause. I can't believe he was playing in his poop! So yuck!

Wednesday, February 11, 2009

Snoozing Altitude

I forgot to post this one earlier, this was our plane trip back to Seattle on Christmas Eve. They both did wonderfully! I was smooshed against the far arm rest, but they were comfy and that's all that mattered.

A Sad Loss

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. :)
Unfortunately we're still in the hospital. Henry is still spiking fevers every eight hours, and no one really knows why. They did x-rays on his chest and abdomin, and tested blood for bacteria and mucus for any virus. So far nothing! The Doctors have taken him off of his home chemo and it's been a week now with out it. His rash is starting to spread again and I'm starting to worry that his LCH is spreading again. When he isn't on the regular chemo it does that. Wish I had better news but when we don't know whats happening I start to worry about everything! The unknown makes me think about the worst possible. One of the little kids at the RonDon who has a little sister going through chemo for Lukemia said to me one day.."I hope for the best but expect the worst."
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

Sorry that it's been a while since a new posting was done. Joel came for a week and it was wonderful! We really enjoyed being together, and although we missed Elizabeth greatly, it was a bit easier to just relax and be together.
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! :)

Henry & Bosy

This is Ryan and Laci's cat Bosy. One night after they came to visit, Bosy wondered over to see us. I think her parents were out on a date so she came to see us. After hiding from Elizabeth, she followed me into my room and watched me put Henry down for a nap. Then when I went in to check on him, she was cuddled up next to him. She had her paw resting on his arm. It was the sweetest thing. I really think animals are more in tune to people than we sometimes think.

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.

Getting Out!

We're finally being discharged today. Henry is napping and I'm waiting for Home Care to bring our supplies so we can leave. The Doctors insisted on putting the feeding tube in until he can get to 9 kg or 9.5. Not sure why they worry so much about his weight he looks really healthy. But I guess optimal health makes it better for Henry's body to fight off the disease. He's doing alright with the feeding tube, although on average he pulls it out three times a day. Which means that I have to put it back down his throat three times a day which can cause quite a bit of irritation. So we'll see how long this lasts. He still has a bit of a cough and runny nose, but is doing well otherwise.
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.