Thursday, December 31, 2009

Puzzle Solving

She looks so innocent and sweet I know..but listen to this one:
Elizabeth has this new habit of hiding things she breaks, however, she inevitably confesses. This time she broke a donated statue of Santa, one of a set of three... I really apologize Juliann...and my mom was very upset with her. All day Elizabeth asks, "Annie are you mad at me?" Annie says "I'm just unhappy with you." Dinner time comes and she sits in her chair with her eyes down cast and says "Poor George he doesn't mean to get in trouble, he's just a very curious monkey." LOL!!!!! Are you kidding me! Mom about fell off her chair and I think to myself how does a three year old figure those things out. And no, she hadn't watched George that day either! Too smart for her own good!
Henry is doing so much better! They drained all the fluid, took the catheter out and the echo's are showing that the fluid isn't coming back. There is still a pocket that didn't drain that they may go back in and drain. The best news, it's not LCH, it's not GvH, it's not infection!! So you say what is it?! That's what they are still trying to figure out.
Henry is just a continual puzzle to these Doctors, but they work so hard to take great care of him. I am so so grateful for the wonderful NURSES and Docs that help with Henry. They make the hospital stay easy and they always make me feel confident in their abilities. And they all love Henry. He's not needing any blow-by anymore unless maybe when he's sleeping, and he's back to his usual self, getting tangled in the mass of cords he is hooked up to.
His new favorite drink besides water...Mountain Dew
Oh and he ate all the jelly out of his PB&J sandwich. First time he's really eaten like that in forever! I guess some good comes of starving a child for 36 plus hours!
So we can all rest a little easier now, he's doing wonderfully.

P.S. Some of our friends are going home tomorrow and we're so excited for them! Yeah for successful transplants! And I just want them to know we will really miss them and they will always be in our prayers and thoughts! Good luck! And I hope the transition home goes smoothly. Please give H. Big hugs for us! Elizabeth will miss him tons!

Wednesday, December 30, 2009

Big Heart

Henry made it past Christmas, but may be in patient for the start of the new year. Monday we took Henry in for labs, and asked to see a Doctor because for the last few days he was having a really hard time breathing, and pain. We assumed it was his back so we asked to have x-rays done of his back and lungs. The Doc looked at the x-rays and said everything look the same, his heart looked a bit bigger but was probably due to the position he was in. We went home, I went for a run and when I was half a mile from home Dad called and said the Doctor wanted us to come back in for imaging of his heart. The wonderful Doctor didn't feel right about the heart thing so he sent us in for an echo cardiogram. What they found was lots of fluid around his heart. We all have a sack around our heart and every day we produce a certain amount of fluid in that sack and every day it gets reabsorbed. For some reason, still unknown, Henry's wasn't being reabsorbed. So we went into the ICU and had an emergency heart procedure to stick a tube into the sack around his heart to drain the fluid.
This morning at 2am they removed the tube, and he's doing better, we'll do another echo this afternoon to make sure the fluid isn't increasing again. Not all of the fluid was drained but they feel that the fluid left will be taken care of when they figure out why it happened and treat it. One possibility is infection, though they feel that's probably unlikely because he has no other symptoms of infection. Second possibility is a common side effect of too many transfusions. The third possibility is LCH in the heart. Scary I know.
Sunday we went to church and heard a wonderful talk about Christ and the many roles we see him in and what they each teach us. She read from Luke 24, when Christ walked with two apostles on the road to Emmaus. Their eyes were unable to recognize him, and they explained to this stranger about Christ and "we trusted that it had been he which should have redeemed Israel" and Christ says to them "O fools and slow of heart to believe." These verses really hit me, and then the woman giving the talk said, we are so quick to curse the darkness, to curse the trials, the unknown and yet Christ is always there walking with us. I was blessed with a great chastisement and my eyes were opened to my lack of faith in Christ. I was then blessed with a peace and a greater testimony that the Lord has a plan for each of us, and if we will trust in him and seek His will, we will be blessed. And so when all this happened on Monday I was at peace, not cursing the darkness, not cursing the unknown. I was more able to accept what was happening and focus on Henry and what he needed and to celebrate the miracle of the atonement and the knowledge of the fullness of the gospel, eternal families and the power of the priesthood.
Henry has already endured so much and he has been blessed with great strength. We are still waiting to find out what all this means and we'll keep you all in formed but I'm trying not to loose hope or faith in the promises we receive from the Lord.

Friday, December 25, 2009

Christmas Day (for Daddy)

Since we weren't able to be together for Christmas I'm posting pictures for Daddy to see his little ones opening presents. We sure missed you Daddy!
Santa brought Elizabeth and Henry a double seat wagon for Christmas! And they both LOVE it! We're gonna take it out on a test run later.

We have been so blessed by the kindness and love of friends and family and complete strangers! Every one has helped to make this Christmas day wonderful for these two little ones.
Juliann I told Elizabeth to laugh while Grandpa was taking the picture, like you did with Reese and as you can see... a cute smile!! Thanks for that!
The best thing this morning was that Elizabeth wanted to open one present and play with it, and check it out and then move on to the next one when mom asked her to.
A baby Cinderella, her new baby that gets sick and throws up just like baby Henry. Elizabeth's friends are gonna think she's so weird because her babies will be throwing up and getting their lines flushed and eat through tubes. Oh life is fun.

Henry woke up a bit cranky this morning, had a rough night, but eventually got into the new toys and presents. After opening the first one he made me open the presents so he could play with them.

I know I look a bit scary but doesn't everyone when they stay up all night and then get up early to open presents. :)
Maracas!!! He loves them! Singing and counting and noise.
He's just got the cutest eyes.
The coolest gift Grandpa found was a phone that you can record your own voice on, so we called Daddy and had him say something into the recorder so Henry could always have Daddy's voice.
Elizabeth requires a library of books prior to going to sleep, and the older she gets the more books it requires to put her to sleep.
Henry on the other hand reads to himself and puts himself to bed.
'Zoes Flower' is his favorite book right now, but I think that's just because it's small enough for him to read. But what a wonderful blessing to have a little boy who will read to himself and put himself to bed!!! I know it won't last forever but it sure is cute!

Monday, December 21, 2009

Up to Date

Tried to upgrade Henry's formula to an age appropriate level, it was lactose free because of his sensitivities. However, it looks like Henry is actually allergic to milk. Different in the way it handles in the body. An actual milk allergy messes with the immune system, an over zealous response in sues and in Henry's case, bloating and severe cramping. The last few nights, well five or so, have consisted of Henry screaming non-stop. During the day he's much more content, it's just night time that he seems so uncomfortable. The Doctor gave us some gas medication, and we increased his morphine frequency, and so far so good.
We have made it almost two weeks with out a transfusion!! Awesome progress. We may end up in the clinic doing a transfusion on Christmas or Christmas Eve, but two weeks is such great progress!
Henry started Occupational Therapy and Physical Therapy today. He's not really excited about some one else playing with him, or making him do things he doesn't want to but hopefully he'll get used to them and start making some great progress. He took a few steps on his own with the help of a walker, but then got mad and sat down. Baby steps...literally. :)

Thursday, December 17, 2009

I know I said I would post some pictures of Henry walking... I'm still looking for batteries, but here are some pictures from Mom's camera from this past summer and some more recent ones as well.

Our little Country Girl. She loved being at Annie & Grandpa's house.

Lunch time with Grandpa on the farm. Her favorite thing to do was ride in the tractor with Grandpa, oh and run wild through the fields like a true country girl.

Nap time with Grandpa

Elizabeth had to spend her 3rd Birthday with Annie and Grandpa because Mommy was inpatient with Henry and Daddy was back in AK. She didn't really care I'm sure and she actually got to celebrate when she came back to Seattle. And then every day was her birthday for a few weeks. At least she tried to convince me it was.

Getting ready for church. Seems like a silly thing, however, it has been about nine months since we have been able to go together. So we were pretty excited! You don't realize how wonderful and uplifting church is, until you can't go for long periods of time.

For some reason Elizabeth isn't sure what a 'smile' is... we tell her to smile and get the weirdest faces... oh well.. at least she's still cute. haha

This was the other day, sliding up and down the hall way. Elizabeth is wearing one of my shirts, it's her favorite new thing to wear for pj's.

A surprise for Mommy.
We had Elizabeth in there and almost taped it up and sent it to AK. Some days she's just too crazy and wild for me, but how boring would life be with out her!!!
So lucky to have her here.
This one was today... Reading the comics with Annie.
If he looks tired it's because he is. He was up most of the night and then took a five hour nap this afternoon, maybe he's just a night owl. Should have had a nap today too, another long night for mommy.


We have our results!
And with a generous bone marrow sample they found NO LCH!!!
Henry's marrow is creating all the new cells his body needs, they said his marrow is about 90% active and yesterday he even made some red blood cells!
The Doctor laughed at us because we had such low expectations, but really in the big scheme of things that's huge!!! He's got lots of iron deposits because of all the transfusions he's getting which can be dangerous. He's getting 'Darbo,' a booster for your bodies red blood cell production, every week now that should help reduce the number of transfusions.
We have been sooooooooooooo blessed!
None of us have gotten sick through these last few months, and Henry has continued to grow stronger every day. He's almost 13 kilos and 79 cm long.
Soon to come will be a video of him walking while I hold his hands. So much fun!
Auntie Robyn came in two nights ago and Elizabeth has been ecstatic!!! She loves her Auntie Robyn and all the extra adult attention.
Elizabeth has learned to draw stick figures, Annie is amazing at stick figures, however when Robyn draws for her, they are actual people... Annie and Mommy aren't gonna do anymore with their silly stick figures. :) Both Henry and Elizabeth enjoy drawing whenever they can, so maybe Auntie Robyn will give them some art lessons.
We ate ice cream last night to celebrate and today we're going to the park... Henry loves the slides.
Thank you all so much for your prayers, we are eternally grateful for all your support.
So everyone can do a little dance to celebrate with us!
"Shake your booty, shake shake shake... shake your booty!!!"

Sunday, December 13, 2009

Such a Character

Our silly little boy is growing up so quickly. I can say to him "Henry sit up straight," and his puffs out his chest and sucks in his gut and tried really hard to sit up as straight as possible! It's so cute!
He slept a long time yesterday afternoon, so was up late last night, and eating cookies with Mommy and Grandpa and Annie, and loving it. We were excited because he was eating something. H wouldn't pick up the cookie, because that would mean sticky fingers, but he would lick the cookie laying on the table. He was loving it!

Showing us how to sit up straight. He acts SO much like Elizabeth these days it's so adorable. He's making so much progress so quickly, making new sounds and trying to walk more with help, he's so anxious to actually RUN after Elizabeth. One of these days he's just gonna take off.

Eating his gingerbread man... well sugar cookie man... He has been such a blessing! Regardless of what he's been through or going through he remains happy and sweet and loving. I have been so blessed with two wonderful happy children and I am so grateful for the joy they bring to my life.

Tuesday, December 8, 2009

Very Brief...well it started out that way

Henry's next biopsy is Friday at 9:30am, we won't have results until Wednesday next week. We're still getting platelets and red blood cells every few days, Henry has adjusted very well to being anemic! Can't even tell when he is low any more.

Not only is Henry enjoying standing up, he really likes to life mommy's weights. 3lbs starting weight... we'll see what he can do in a few months.

The Doctor laughs at how well trained Mommy is... all Henry has to do is point and grunt and I know exactly what to do... I'm trying to train Henry.. but I guess I'm the one being trained! haha

Seattle 3rd ward is wonderful, they have really helped with providing some nice Christmas decor for the apartment. While I was trying to teach Elizabeth about the Savior and his birth and the reason we celebrate Christmas.... she was watching Dora and Diego and told me that Santa's sleigh is stuck and it's full of toys.. "where's the present for me? and Annie and Grandpa and mommy?" Curse you cartoons.. I guess it's my fault for letting her watch TV. But she does love the nativity we were loaned and is really excited to celebrate Jesus' birthday.

We may actually be able to start going to church again. Henry's counts are good and he's doing well enough that he can be in a crowd.. just no sick people. So we'll continue with just Sacrament meeting. But oh what a blessing that will be!!!! I haven't been to church since March maybe. Wow... forced into inactivity!! haha

Goodwill is Awesome! Hit the jack pot last trip and found Henry an incredible coat and really cute Gap pants and they were all half off! Plus some really cute shirts. I know.. germ freak shopping at Goodwill doesn't quite fit.. but I do have a washer :) I Love meeting fellow Goodwill shoppers. So exciting finding the goods and at such great prices!

Thank you Cari for thinking of us! You are incredible and I am so glad you're home but wish you were down the hall too.. :) hope you guys are all doing well. Give Ben a big hug for me!

Although I'm finding it hard to get into Christmas mode this year... I am eternally grateful for my Savior. The Christmas Devotional was awesome! Our Savior, who created the earth and everything on it, born in a humble manger, lived a humble life of service to others, and gave willingly his life, to atone for the sins of all...something he didn't need because he was perfect. And yet he loved us so much, he willingly carried our sins and heartaches so we wouldn't have to, so we would be blessed with the opportunity to repent and receive forgiveness. My life has been blessed beyond what I could ever have imagined! The opportunity to be sealed to the man of my dreams and to be a mother in Zion! What incredible blessings! For every heart ache in my life I have received joy ten fold! I cannot see the pain and suffering without seeing the out pouring of blessings and love. My Christmas wish is that everyone knew their Savior, and knew about the great plan of happiness. That all could be blessed with the Gospel of Jesus Christ. To know him and to know how much he loves each of us and is aware of us and our needs, to know that he would give us all that we need if we would but come unto Him.

Saturday, December 5, 2009

Christmas Deco

A really nice man said to Elizabeth, "Are you getting ready for Christmas?" And she says to him "we don't have Christmas!" So a few days later we got this... A pre-lit tree and a few decorations. A wonderful new invention.."non shatter" ornaments! WONDERFUL! I only had to tell Henry once not to touch the tree and he doesn't, however Elizabeth can't seem to keep her hands off. Oh well they are both exited about the lights. The Hospital has a bunch of trees lit up with lights and they both love them. We're hoping to go over during the evening to get some nice pics.
The chair plays a dual role, makes the tree and decorations a little country and it keeps little "scooter" as my Dad calls him, away from the outlet.

I asked Elizabeth to stand in front of the tree so I could take pics and she proceeds to play "pin the ornament on the tree" eyes closed.. dangerous game, thank goodness for the non shattering ornaments. We also have those wonderful cinnamon pine cones hidden in the tree and the apartment smells wonderful! A bit over powering at first, but at least we weren't smelling puke or dirty diapers. :)

Wednesday, December 2, 2009

Wait a While With Me...

Our Doctor wanted to reassure us that she hasn't forgotten about us. She has been calling several Doctors about Henry, and what they think may be happening with his marrow. His marrow just isn't able to produce enough platelets or red blood cells, and the cells from transfusion go straight to his spleen and get chewed up and spit out! There are many theories, but none that seem to fit Henry. Some Doctors say his spleen could be large because of liver problems, but his numbers and liver functions are normal. MY theory is that his liver and spleen are trying to compensate for the lack of cells in the marrow. There is a technical name for that I don't recall what it is but our Doctor agrees that could be the problem as well. However, the only thing we can do with that is wait for the marrow to recover. We are getting another biopsy on the 11th and we're scheduling with someone who knows how to get a good chunk of marrow so we don't have to deal with the small sample thing again.
Henry isn't showing any signs of the disease at this point, his only problem is transfusion dependency.(Needing blood and platelet transfusions every few days) He is growing and developing much quicker and acts happy and normal. He definitely knows how to say Momma, thank you and please, when he's feeling nice, in sign language. Many times LCH patients reach a point in treatment where they have to just wait for the disease to burn out and our Doctor feels like we may be there. So while this info doesn't get us home sooner, I am very positive and hopeful for Henry's recovery and continued health.
There is still a possibility that he'll need a transplant simply because his own marrow is exhausted and scarred, and he may need his spleen removed (Transplant Doctors are arguing over that one) But if you could sit and watch him play you wouldn't even know something was wrong! We have been so blessed by the Lord's tender mercy and love. More recently I have reached the point when I didn't think I could endure any more. Not that I'm the one enduring physically like Henry is, but emotionally and spiritually I have felt exhausted and all I could do was turn to the Lord and lay it at his feet. I know that through life we are never alone and the trials we feel we're enduring alone, the Lord is there carrying us through. And yet I still become exhausted and feel over burdened. I don't understand exactly how the atonement works but I know it's real. I know the Lord endured all things, every pain and affliction that we would face in this life. He knows how to succor us, to lift us and comfort us because he's experienced everything we have. He also says, "Come unto me, all ye that labor and are heavy laden, and I will give you rest." (Matt 11:28) Through the atonement we can turn to the Lord when we feel we can't endure any more and he will rescue us. I have been blessed with an increase of strength and peace when I felt I couldn't endure any more and relieved when I couldn't go on any more. Truly he has born our pains and sorrows, and calls to us to come unto him. He who commands the heavens and earth calls to us, and asks us to come unto him.

I have to add that last night Elizabeth was saying her prayers, and prayed for the food and prayed for Henry to get better and then said "please bless Jesus" :) Only from the mouth of babes.