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.

CELEBRATE!

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.

Sunday, November 29, 2009

My Little ball of Fire!

Elizabeth, Henry, Grandpa, Annie and I went down to Magnuson Park today. I went running down by Lake Washington yesterday and found that they had built some new wetland areas, and there were lots of birds and ducks and ponds and it was really beautiful. So I thought it would be really nice to go for a walk down there today, so Henry and Elizabeth could see the ducks. However, upon arrival Elizabeth headed straight for the Lake. She calls it a river, but she remembered wadding in the water with Mommy this summer and was ready to do it again. I had to explain and show her how cold the water was, and she was only allowed to walk a little ways so she wouldn't get water in her boots. She definitely loves playing in the water.
As hard as I tried to keep her dry, she got water in her boots, but didn't seem to mind. She wanted more.


She's so cute and fun! I was really bummed out because the camera batteries died after this picture, and I forgot to bring extras, so we'll have to make another trip to show off the new wetland areas. It was really nice and calm and beautiful. After reading a talk by Pres. Hinckley about Gratitude, I was more aware of the beauty that surrounds us, and the amazing creations that the Lord provides for us. I have thoroughly enjoyed being in Seattle all it's beauty.
We took a long route home in hopes that Elizabeth would fall asleep before we got home, and it worked until we got back to the apartment. She woke up and when I tried to get her back to sleep she screamed and screamed and yelled and kicked and refused to go to sleep. I have decided it's impossible to put her down for a nap when I'M tired and cranky! I was trying to explain to her that it was okay to take a nap, but she said she couldn't because she was a country girl. I'm convinced she's afraid of missing out on something. Most days she doesn't take a nap, simply because I'm too tired to try, or I just don't want to fight with her, I feel like all day long I'm yelling at her for something, and I just want to be a happy Mommy and have fun with her... instead I'm this angry monster that's always on her case. So instead of a nap we do early bed times which I'm totally okay with. She's independent and far too mature for her age anyways, I guess she can go with out naps now that she's 3! hahahaha Oh how I love her, and her crazy reasoning and explanations. She makes life interesting and fun and she is always able to remind me of the important things in life. Earlier I was trying to convince her to get dressed amid screams and tantrums... and trying to remind her of why we take the sacrament each week. We looked at pictures of Jesus and she said, "I miss my Jesus." I said oh yeah, what does Jesus do? She said "He gives me hugs, and holds my hand, and we sing." It was so sweet, and we sang some songs about Jesus and tried to bring the spirit back into our little apartment. Thank goodness for little children and their sweet spirits!

Friday, November 27, 2009

AGAIN?!?!

Henry has decided that it's much more fun to be inpatient during the Holidays. On the 4th of July we were admitted before transplant, then after being discharged he went back inpatient the day before Halloween, and then yesterday he decided to be admitted again. We were scheduled for a blood transplant, but Henry reacted to the blood for some reason. His blood pressure was really high and he spiked a fever, even after getting Tylenol. On top of which they drew a CBC and found that his counts had all drastically dropped. Henry's ANC dropped from 1900 to 420, and all his cell development with in the marrow had dropped to ZERO. Which means that his marrow was no longer producing anything...which said to me the LCH was back and was rampant in his marrow.
I'm not sure why I get so upset when we have to be admitted, maybe it's the lack of control, whatever the reason I always get upset and with his counts being that low I was devastated to say the least. I was completely ready to face another transplant if his counts weren't coming back in, I was not prepared to have the LCH come back so quickly and so strong.
So we spent most of the day up in the HemOnc clinic, getting lasix and meds, before being admitted. Mom and Dad took Elizabeth, who was also upset by being separated from Mommy and Henry, to cook some sort of Thanksgiving dinner. Thank heaven for that, I was NOT going to eat cafeteria food on Thanksgiving!
I do have some good new though... after getting some GCSF, an immunity booster, yesterday his counts recovered to well over 2000. And everything else looks good too. That doesn't mean that the LCH isn't there, but at least his marrow isn't completely shut down. We did have one of our favorite nurses to greet us and she was wonderful and made sure we had everything we usually like! Thanks Megan! And he got to flirt with all his other girl friends. I figure he has spent most of his life with them anyway, so holidays with the family means being inpatient with his 'family' haha.
Elizabeth and Mommy got their flu vaccines today, H1N1 and regular flu shots. Elizabeth watched me get them and said "Mommy you didn't even cry!" Then it was her turn and she screamed so much every one in the hospital knew she was getting the shots. Poor thing needed her Daddy to help her, Mommy just tried with all her might to hold her still. She some how made it through two shots, scared all the kids in line behind us and cried all the way home. We took her to the park to help her feel better and she ended up falling down in the mud and getting soaked, so we went home for a warm bath. Juliann, I thought about sweet little Reece, because the band aids fell off in the tub and she said "mommy they're all better now!" And decided to rip my band aid off, because mine was better too. Silly girl!
Well Henry needs a bath before bed... he's back to his normal self scooting all around the floor and playing with Elizabeth. One night inpatient was enough for him. Although we were inpatient, I do realize how full my life is, how blessed we are every day to have Henry and Elizabeth, and to be together most of the time. We are ever so grateful for the medical staff that looks after Henry and does their best to care for him and help him get better. He looks amazing, and is growing every day... today he's 20 months old!! But more than anything I am grateful to my Savior, for carrying me through this trial, I could not have made it this far, and could not go on with out his strength and love. What a miracle the atonement is in all our lives!

Friday, November 20, 2009

At 'Home'







video


I know we're not actually at home, but this is home for us right now, and like I said in the previous post he's doing really well being at home. Elizabeth loves to play with him, and Henry is beginning to mimic everything Elizabeth does or says. And even when Elizabeth tries to pull him along the floor by his arm, he is eager to hug it out.. make sure she knows he still loves her, even when she's too rough.

Instead of worrying about where mom is now, he just cruises down the hall looking for Elizabeth and something fun to do, he definitely found it today! What a little stinker! But oh so cute, and why is it wonderful and funny when Henry does it and when Elizabeth does it I want to spank her! I know, mommy's got some learning to do... and some patience to acquire. Poor Elizabeth.

Yesterday we went into the clinic to get labs, and the nurse was really congested, we're hoping that she wasn't sick, but Henry is definitely getting more congested and tired, could just be his platelets and blood are low again. The Lord has blessed us all with great health, including Henry and we are very grateful. A few families I have recently met have lost the fight against Histiocitosis and or had huge set backs. They are definitely in our prayers, but it makes me oh so much more grateful for the blessings and miracles in our own lives. We hole up in our apartment and only leave to go on walks, I'm too paranoid to be out and about with Henry still. Thank heaven for the apartment we are in, rather than the smaller hotel size rooms in the other houses.

P.S. Juliann thanks so much for the games, we played the train game and my parents really loved it, and mom and I have been playing scrabble every day! Hope you guys have a great Thanksgiving at home.

Thursday, November 19, 2009

Bit of Good News

Yesterday we met with the Doctors and got some good news, his CMV is at zero again! His counts, while being suppressed by medication for the CMV, are still over 2000. He's still requiring blood and platelets every few days, but now that the CMV is gone he may be able to keep his counts a bit higher. Also we're going to test his steroid levels next week and see if he can get off another medication.
Today seemed like the day he decided to get up and go! Instead of sitting in the living room to play, he started scooting around the halls and into the bathroom, where Elizabeth decided to give him bathroom cleaner, don't worry Mom was watching them. :) He's still hooked up to the backpack with his feeds 24/7 but doesn't stop him, he scoots until it pulls tight and then pulls on the cord to get it closer, and then scoots some more. The other day Elizabeth was jumping on the couches and when she got done Henry kept trying to get us to help him jump on them too! He wants to run around the house with Elizabeth more than anything! Being home has been really really good for him, and he's just getting stronger and happier every day.
I asked the Doctors about the six month waiting period for transplants, and they said if he's looking this good they still won't do the transplant. We're going to keep a close eye on him and the disease, making sure that it doesn't start acting up again.
While I really wanted to be home for Christmas, I don't think we'll be there this year. We are gonna have to wait around and see how his body responds. I love watching Henry discover new things and new ways of communicating. He's almost got "mom" in sign language down, we're still working on it. He's such a happy beautiful boy and I'm so blessed to have both of my wonderful children!!!

Monday, November 16, 2009

Play Time

Not the greatest quality picture, I tried to crop them first but didn't work, and I just didn't care anymore.. have more things to do today. :)

Henry and Elizabeth spend most of their time together playing these days, or watching cartoons together. I tried to put Henry on the floor this morning to play, but he kept pointing at the bedroom wanting Elizabeth to come play with him. Annie and Grandpa got Henry to eat a bowl of cereal, I swear that kid will eat for anyone but Mommy, he doesn't trust me any more because I feed him all the gross medicine. Last night we all knelt down by the bed to say prayers with Elizabeth and I asked Henry to fold his arms and he did! It was so adorable! We are all learning sign language, about ten words a week so we can start communicating with Henry, well actually we're trying to get Henry to talk to us. He still doesn't talk, but he points at what he wants and is starting to make more fun noises. We can't say anything about "going" or "walking" because he'll point at the door and cry until we actually leave. He knows exactly what we are talking about, we just have to figure out what he is talking about.
We have labs and doctor visits at least three times a week, and transfusions every other day, but Henry so loves to be home with Elizabeth. Last night he did fairly well, sleeping through the night is something foreign to him, but he's starting to get better at it. He and Elizabeth were tag teaming me, I would get one back to sleep and lay down and then the other one would start crying so it was an interesting night, but I did get some sleep. I love watching them play together and see Henry really thrive. I really hope we won't be here until next summer, but if that's what the Lord has in store for us, so be it. We have a donor that's a perfect match, so if we need to do the second transplant we're all set. I am still hoping for a miracle, that we won't actually need the second transplant but we shall see.
I started to complain and wonder why we had to be in a situation that separated us as a family, and I started to think about all the families with husbands or wives in the military and in other jobs that separate them for long periods of time. While it may not be what we want, you make it work. And maybe there isn't any other reason than having empathy for someone in a similar situation, and knowing how to serve them. We all miss Daddy TONS!!!! And hope he doesn't get too lonely at home with out us, but I take comfort in knowing that we have been sealed together as a family for eternity. It will be but a small moment, and soon we will be together again.

Saturday, November 14, 2009

Mommy's new hair cut, and Elizabeth trying to smile with her eyes open. Silly girl. Still working on that.
HONK! HONK!


Cuddle time with Grandpa, one of the few times Henry wasn't demanding to be held by mommy. He's slowly adjusting to Grandpa and Granny Annie taking care of him too. Henry and Elizabeth are having issues with sharing mommy right now, and so it's been a very stressful few days! But I think we're finally over the initial adjustment.


video

I just love his face, he knows what he wants and tries very hard to use his adorable looks to get it! Smart boy!

So here's where we stand as of yesterday...Doctors said that the sample size is normal for a baby, and it's a huge bummer that there were histiocytes in the bone marrow. There is usually six month period between transplants, so Henry has until February to get his counts up, and his marrow recovered. We will continue to watch his disease at this point and see what happens. While I dislike waiting, and the idea of being here much longer, I greatly appreciate the sense of an end date. He's doing great today, happy as a clam, just needed some sleep and some blood. So we'll be doing clinic appointments every few days and then transfusions as often as needed. We are hoping that as he gets off the meds that are suppressing his counts, he'll do much better and need fewer transfusions. And every month or so we'll probably do work ups on his marrow and everything else to see what's happening.


Thursday, November 12, 2009

Just a quick note to let every one know about the results of Henry's tests. While his liver functions continue to be normal and electrolytes are good, they did find some histiocytes in his bone marrow. The sample size was too small to get a very good picture, so I'm unsure whether we are now moving toward transplant or if we will wait for another, better biopsy. The Doctors I talked to said there can be hisitocytes in your marrow, but with his history they can't rule out anything. So the test in October had no sign of the disease, this last one did. Friday we'll meet with our Doctors in clinic, cause we got discharged from the hospital tonight... YEAH... So sorry Katie! We're still in a holding pattern waiting for the next step. Henry really needs to get back to bed, I'll post again Friday after talking with the Doc's.

Friday, November 6, 2009

Most Recent Henry!

He has grown up so much! Still got those big baby blues though. And check out those eye lashes and eye brows.
Really likes that panda bear but it sheds a little and he hates having anything stuck to his fingers

This is the fourth PIV, the other three blew, and the PICC line clogged, and finally today in a few hours he'll get another line in his chest. He has so many battle wounds already! When he's really upset he will start to point out all his scars to me and give me the most pathetic face... I think he's already learning to manipulate his mama.
Luckily for the nurses that have to place these IV's, Henry doesn't hold a grudge, so when they are done hurting him he smiles and is nice to them. What a kind hearted boy!
Seriously mom you're making me nauseous with all the pictures!!!

Check out the HAIR on his back and arms!!!!d This is the result of one of Henry's many meds... and yes it should go away eventually, we're not really that hairy. Although he doesn't really need a shirt he has a perma-sweater... hahaha

I love this smile! He is such a cuddle bug, mostly just cuddles mom and his stuffed animals it's great!

Thursday, November 5, 2009

The Good with the Bad


Really funny experience yesterday, I was reading in the last chapters of Moroni when Mormon is giving us words of encouragement; teaching us about faith, hope and charity. One of my new favorite verses is 7:39 "But behold, my beloved brethren, I judge better things of you, for I judge that ye have faith in Christ." Lately I've begun to give up hope that Henry could over come his LCH with the one bone marrow transplant, I know the whole post about doubting nothing... and I'm doubting a bit again!!! This gave me encouragement. I have so enjoyed reading the Book of Mormon this last year, it was much more emotional and inspiring and personal. At the same time I was receiving inspiration and guidance, and encouragement for my own life. And Moroni and Mormon truly saw our day and counseled us with the things they, and the Lord, felt most important for us to know and understand. And that verse helps me when I'm doubting myself and my faith.

Mormon continues to talk about charity and he tells us that if we are meek and lowly of heart and confess the Jesus is the Christ we must have charity, "if ye have not charity ye are nothing." Verse 45 teaches us what charity is, "Charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things." I thought to myself I could argue that I've suffered long, but not really, and although I try to be kind I'm not always, and I envy those that have healthy children, and I feel puffed up when people complain about being here for a few weeks or months, because I'm so much better for being here longer.. I know makes no sense...I am continually seeking my way, and just going to the ER provokes me! I don't think I rejoice in iniquity and I believe all that I know, I definitely hope for things, and have a hard time bearing all things... all in all I was laughing because.. I'm pretty sure I just checked everything off in the "need to work on" column!!! hahahaha However Mormon continues to give us a hopeful out look, he says, "Wherefore, my beloved brethren, pray unto the Father with all the energy of heart, that ye may be filled with this love, which he hath bestowed upon all who are true followers of his Son, Jesus Christ." So at least I know that while I may not have charity now, I can indeed pray for help in attaining it.

Understanding faith, hope and charity, have helped me handle the things we have faced and it has helped me to renew my hope that Henry will be able to be healed with out the second transplant. I talked with the Doctors yesterday at rounds about our outlook at this point, and while we are doing all the pre-staging for a second transplant we aren't decidedly going to do it. Better to have everything in place in case you do need it. Here is the breakdown of what we have done and what's coming and how they tie into the decisions ahead.

1. ultrasound of his liver and spleen: they both are still large, but stable from the last ultrasound.

2. CT of his head lesions: No new ones, old ones are healing

3. Bone Marrow biopsy: will do tomorrow, looking for any histiocytes or signs of LCH. Also looking to see how much of the donor is still there. Last test showed 15% which can still lead to GvH, so they will rule that out. If there are no histiocytes, no real need for transplant.

4. Darbo: Every two weeks he gets a shot to help boost the red blood cell production. I asked if because his counts weren't strong enough to stop the frequent blood transfusions if that would be a reason to do a transplant and they said no. That is something they would wait out and give his body a chance to rebuild on it's own.

5. Check back with Dr. White about bone density, and the continuation of pemidronate (boniva). His back is definitely stronger, they want to x ray or scan his back to see if it's healing.

We're basically doing a huge "how's Henry's body doing" check up. And then we'll definitely know whether we need the transplant now. On the other hand we go back into waiting mode, waiting for signs of the disease to pop up, or for his body to rebuild. Getting him transfusion independent is the big next thing in my book. His liver and spleen being large and directly related to the marrow's inability to build more cells. However, he is back on medication that suppresses the counts so once he is free and clear from his Bactria's and virus' we'll have a better idea of how his body is doing.

I had hoped that we would be able to leave shortly after Joel to head for home, and while that isn't possible yet, I do feel that it won't be very long. Henry is definitely strong and the Lord is so merciful and kind. I have gained a greater understanding of hope and trust in the Lord and while I still some how find things to complain about I know we are abundantly blessed! And I know that if we seek the Lords will and do what he asks he will bless us with an increase of faith, hope and charity, regardless of how weak we may feel we are. I know this was long and drawn out but there was just so much I wanted to share with everyone. Much love to all our friends and family.

Friday, October 30, 2009

Halloween Fun

Even though we are not all together for Halloween, nor are we going to risk taking Elizabeth trick-or-treating; we are still having lots of fun. Last week we bought a pumpkin and for the last week Elizabeth and I have been trying to figure out what we wanted to carve. We are technically not supposed to have pumpkins in the RMH house for whatever reason, so we knew we had to carve something really cool so if we were caught with the pumpkin people would be distracted by how cool it was rather than thinking about the rules. Well we had room inspections today just after I finished carving and cleaning up the mess. The plan worked and they just said it should disappear before Monday inspections. So here is what we did. Elizabeth wanted Sponge Bob Square Pants. We found one we liked on-line and I free-handed it onto the pumpkin with a sharpie. I then cut it out using a steak knife and a pair of hospital scissors I swiped a few days ago. It was kind of hard not having a good knife or drill bits but I was pleased with the outcome. We also had to use a flashlight in the bathroom since flames/candles are for sure off limits.



Thursday, October 29, 2009

Here We Go Again...

So Henry was out of the hospital for a few days and then after getting a platelet transfusion he spiked a fever and ended up back in patient. Roller Coaster here we go again...
Henry had a fever that wouldn't go away, and he was shaking and doing very poorly. They have since started him on a morphine drip again, and scheduled adovan and benedryl and reglan, and with all that, he whimpers most of the day. He tested positive for a bacteria in his blood and they were concerned that the bacteria was spreading fast, which leads to septis. After a lot of different blood tests they discovered that Henry has a certain antibody in his blood that attacks the blood from blood transfusions if they have a certain antigen in them. Complicated I know, it just means that they have to screen the blood they give him during blood transfusions. We're not sure if that goes for platelets. He still feels terrible most of the day and is struggling to get comfortable.
Last night Elizabeth and I went to the Hospital at 9pm because I was really concerned about Henry and they weren't going to let me go up and see him. So I talked to the charge nurse, who we have worked with a lot, and in trying to fight my way up I couldn't help but start crying. Concerned parents who don't want to drop their children off somewhere are just out of luck if their child is having a bad night. (Juliann and Bri I was going to call but thought it was a bit late and if the need comes up I will definitely be calling. :) So after a few waterworks they let me up stairs. Henry cuddled me for a while and after about an hour was calm and sitting in his stroller. So Elizabeth and I left so we wouldn't wear out our welcome.
Not sure how much longer this ride will last, but hopefully not long. I'm still so concerned that Henry will suffer from something other than the LCH. I know he's strong and he's fighting a lot right now and still finds a few minutes to smile. He's stronger than I am in every way, I'm just trying to have faith and patience and great hope.
We bought a pumpkin to carve together, and I got stuff for a fun Halloween night. We may be celebrating Halloween together later, or saving it for celebrating Henry getting out of the hospital. Elizabeth is demanding my attention...

P.S Jimmy and Joy how are things going? Been thinking about you guys a lot. Hope things are going well. Hugs from Seattle.

Sunday, October 25, 2009

Girls Day Out

Unfortunately Henry is back in patient, and the new rules this flu season are, no visitors under the age of 12. So Joel is with Henry at the hospital and Elizabeth and I are hanging out together for a few days. Then we'll switch. Some how Henry acquired a bacteria in his blood, spiked a fever and has to be in patient for at least 5 days, to get released he has to have three negative blood cultures. I just hope Joel and I get to see each other before he has to leave in a week. So today after having our own little church time, we went for a walk.
Enjoying the fruits of fall.
Bobbing for apples in reverse?!

Not sure what these are they were just pretty and red.
I know I'm a dork, I openly admit it and accept it.


We walked to a new park on Ravenna.
Elizabeth really enjoyed the play set, it was mostly climbing ropes.

She's a natural, a bit scared but when a little boy told her he could do it easy, she walked right across. That's my girl!

Our favorite part of the park wasn't the play set though. The trees were awesome! Looks simple enough on the outside.


But a mess of tangled branches and twigs. Elizabeth and I hid under its canopy of branches while it rained a bit.
Open fields are always nice for a little girl that likes to run! And I love the colors of fall here, you can actually enjoy the colors of the leaves on the trees for a while before they fall on the ground. Unlike AK where the leaves get forcefully blown off by the wind and autumn only lasts a few weeks at most.

A few turtle shaped rocks. Elizabeth and I were able to successfully rescue the three turtles that were in trouble. She's an avid Diego fan! Story time at night consists of Elizabeth and Diego stories, both are animal rescuers. Mom's imagination needs to expand a bit though...

The other awesome tree.. well trees in this case maybe all grown together.. a jungle gym of trees.

Loves to climb.
Like mother like daughter.

In the mess of tangles trees. After a while it started to rain again so we decided to head home. However with a mile left to walk Elizabeth insisted on being carried. She was running too fast she said and was too tired to walk anymore.
She's so much fun! We had a great day outside. It is so beautiful here. I love the crisp cool days, it reminds me of home.