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.

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.

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.

Bumpy Road

Since we got out of the Hospital on Wednesday Henry has suffered from separation anxiety issues. He is also still going through "mild" withdrawals (Ok Lisa laughed/cried hysterically when I wrote the word Mild) from the pain medications as well. For whatever reason he screams and screams unless Mommy is holding him. Although cute for a few minutes Mommy can't even go to the bathroom or shower without the little man screaming at the top of his lungs, non-stop. Trust me NON-STOP! On top of which he has a stuffy nose, I bought the little baby nose bulb sucker but they are half the size they used to be. I remember the ones my mother had when the bulb was the size of a baseball and you could actually get some sucking power out of them, these new ones are worthless. A good friend is looking for her old one so we can wash it and give it a try. I even went to the store to buy a Turkey Baster but the tip was a little too big to fit in his nose :) I have even played with the idea of buying a little dust devil vacuum and duct taping a aquarium tube to the end for some suction power like the one we had in the hospital. Any Suggestions would be appreciated! We are getting desperate!!!!!!!!!!!!

4 Leaf Clovers

When I was a kid I had a natural talent for finding 4 leaf clovers. I could look at a clover patch and the 4 leaf clovers seemed to jump out at me and look like they did not belong. Well today while Mommy and Henry went to the Hospital for his daily appointments, Elizabeth and I went to the Park. I was teaching her about the trees and why the leaves change colors in Fall. We practiced colors, and then practiced counting. We stopped at a clover patch and she asked why grass does not change colors? I avoided the question for the obvious reason of not knowing the answer. I showed her the clovers and asked how many leaves clovers had, she counted "One Two Tree" (we are working on the TH sound in her pronunciation) I explained that clovers each had 3 leaves and we practiced counting "One Two Thhhhhreee" she picked a few and continued counting. I was not fully paying attention and then heard her say "One Two Thhhhrrreee Four" I looked just in time to see her rip off a leaf and turn to me and say "Daddy I fixed it". We proceeded to find 4 more 4 leafers. She seems to have the same natural ability to find 4 leaf clovers as her Dad. So, to all of you out there who keep saying Elizabeth takes after her Mother, your still right, she does where it matters...... But the rest is still me! Booo Yeah. J.

My Vagabond

He's playing the homeless vagabond roll.

Actually we're moving out of our hospital room today and back to the RonDon!!

Definitely acquired more stuff than I thought, which is always the case. Should only take a few trips through the rain. My Hero!

Bursts of Giggles

Henry loves to watch Elizabeth, and he has one of those very contagious laughs where you can't help but laugh with him. I love that his laugh is actually becoming a laugh and comes from the gut. :) What a silly boy and a silly big sister.

HOORAY!!!!

Doctors said today that they are discharging Henry tomorrow!!! WOHOO!! Elizabeth is so excited to have Henry come stay at the house with us, so we don't have to worry about who's night it is to stay with Elizabeth. Although she gets pretty excited when it's Daddy's turn, they are two peas in a pod!
We weren't able to completely stop the cyclospine, but can do it orally at home, and it will only last for two weeks. Oh and the class I had to go take the other day... we're not even doing fluid at night, so I didn't need the class, although perhaps at some point we will and then I can say I already know how to do it. :)
He's still needing transfusions every now and then, but doesn't need any immunity boosters so far. They are watching everything as closely as they can regarding the LCH. His spleen and liver are still enlarged, although much smaller than they were, and his alkaline phosphate or whatever is high, which can be an indication of bone involvement and LCH. His liver and gal bladder are still working on getting cleaned out, but over all is doing well. No rash is presenting itself, which is wonderful.
We continue to hang on to our faith in the Lord, hoping that we may be able to return home soon. For the rest of Henry's adolescence we will be paranoid about rashes and the LCH coming back, and we'll be doing check ups and medications and what not for at least two more years probably three. However, I'm anxious for the day we can finally be home in Alaska. We have been blessed to be together as a family through most of this trial and it has made it so much easier. Seattle has been wonderful and I'm thankful for the time we have been here and the wonderful friends we have made.
In a few weeks we'll have another bone marrow test and full work up to check on his body and see how everything is going. After that I'm not sure what to expect but I'm simply taking it one day at a time trusting in the Lord with every bit of faith I can muster. Truly the Lord blesses us with an increase of joy when we have endured so much sorrow. I am so thankful for my Savior, for his atoning sacrifice that grants us the peace and comfort we need. And the greatest miracle of all, eternal life. My life has been infinitely blessed because of my belief and knowledge of the Gospel of Jesus Christ.

Today's Progress

This morning Henry's Morphine was turned off! YEAH for Henry! He's a trooper. The other night he was really really mad. Woke up at 2am and screamed, well yelled and hit mom for two hours!!! Nothing I did could calm him down so I gave in and asked for a bolus of morphine, it's an extra dose basically. Well he was getting about .33 ml over an hour and the bolus is about .7 ml's over 15 minutes. The results: A loopy laughing boy. hahaha I was covered in puke, because when he gets really upset he pukes... and his feeding tube popped open and stomach fluids were all over me as well. It was a mess!!! But he was laughing in his bed while trying to go to sleep it was pretty funny. The giggles over the next thirty minutes helped me get over the puke and gunk all over me. What a night.
So now that Henry is off his morphine drip he can be unhooked for big chunks of the day, after his meds are all done. Most of them are oral anyway, but we're getting there... where you ask.. OUT OF HERE!!!!!! Wednesday is still our goal date of being discharged. His feeding is going much better, but we're struggling to get him enough feeds over the day. I know, they had him on a diet before, but he isn't getting any extra supplements so he needs to get more feeds. He's getting about 55ml's an hour when he isn't puking. A work in progress.
I get to attend a class at the SCCA today, have to catch a shuttle from the hospital to down town to take a class on how to work a feeding pump. WHY?! I've been doing this for oh about a year and a half... not good enough, they can't teach me here I have to go there... and when we need supplies we have to go all the way down to the SCCA. UGH! And they only give you FOUR days worth of supplies! I think they really need to work the kinks out of their system. Such is life. At least we'll be out patient. He's making huge progress every day. I keep reminding myself that all the little things add up to great and marvelous results. :)
Elizabeth and I are starting to do class every day for as long as she'll pay attention. I realized that while I was holding her out of Nursery and everything to keep her safe from germs I wasn't taking the time to teach her what she was missing. I started to read the Feb. Ensign and it was like a book of all the things I wasn't doing... a book of things for Lisa to work on! So I'm trying to include school and nursery into her daily schedule so she isn't so far behind everyone else. She'll get into Primary and not know anything. I realized too that I was relying too much on others to teach my kids when it's my responsibility. Today we went on a nature walk and picked up leaves so we could find out about all the trees in Seattle, and have a piece of the beautiful fall that surrounds us. It will be interesting to see how long I can keep it up.

play time with the wild ones

Just wanted everyone to know that the Lord is blessing us daily with miracles that may seem small but are monumental!

First Henry played hopscotch with Elizabeth :) Loved it... I help him up and he chased her around, sort of but laughed a lot and moves around with not much pain.

The Doc's shut off his micafungin(sp) and foscarnate, one to fight CMV the other to fight any other virus or cold. We reduced his anti-nausea meds to every 8 hrs, and his morphine is being dropped more rapidly than we expected. All this adds up to getting out of the hospital by the end of next week. :) WOHOO!!!

His feeds are running at 45ml/hr and goal is 48. So today we'll bump it up to 48. On Monday we check Cyclosporine levels and hopefully shut it off. We have nothing holding us in the hospital at this point other than the cyclosporine.

Finally, Henry's liver is shrinking a lot! It's amazing! And the smaller his liver and belly get, the easier it is to move around. He's getting more comfortable in the tummy position and standing. He's so fun and LOVES his big sis! They chase and play and roll around so much together.

Seems like small steps but the Lord is showing us proof that he hears our prayers and is answering them daily with miracles happening before our eyes.

When we trust in the Lord with all our heart and seek to know and do his will, he will bless us beyond our understanding.

Miracles

I hope that my earlier post "figuring out life' didn't offend anyone. After really searching for understanding and talking with my mom and pondering the scriptures I was wrong. So many go through losing a child for one reason or another. Many have to struggle with life time ailments or handicaps. All of us at one time or another wonder why we can't have the BIG miracle, the one that will completely heal our loved one, bring them back or relieve the pain they are enduring. I thought of a dear friend who had great loss in her life and I know she has incredible faith, there are so many that, to me, are spiritual giants who endure loss. Their faith far surpasses mine, and to assume that they didn't get the 'heal all' miracle because they didn't have enough faith is wrong and cruel.
At the end of my earlier post I wrote that looking for the miracle takes faith. What I understand now is that the Lord promised to give us what we 'need' if we ask in faith. Many times what we feel we need, isn't actually what we need at all. The Lord knows us personally and individually and he KNOWS what we need. We have to listen to the spirit and figure out what it is we may need and then ask in faith for it.
It may not be our faith that is lacking but our sight. We do not see things as the Lord sees them, for he sees the whole picture. Years after we experience something we understand more of the 'whys'. We can see how things worked out for our benefit. We have to be willing in our search for miracles to open our heart to what the Lord has in store for us.
When a mother loses a child, we can wonder why the child wasn't spared, why they didn't get the "BIG" heal all miracle. But if we look through the Saviors eyes we see that the miracle is the Atonement of Christ, which provides resurrection for all and and the possibility to be with our families for eternity. Eternal life is the miracle. The Miracle of the Atonement is the greatest miracle of all. Although it may not ease our pains at the loss, we can receive comfort in knowing that we did receive the greatest miracle of all; eternal families.
In my prayers to the Lord I finally came to realize that among all the things I thought Henry needed most of all I prayed that he would be made whole. And then I sought the Lords guidance, simply asking "what will ye have me do now?" I have asked for what I feel we need with faith. I trust in the Lord and I will take every day and ask the Lord what he will have me do.
I don't know if this makes any sense, what I'm trying to say is this, just because we didn't get the miracle we wanted doesn't mean we didn't get our miracle. We have to see with the eyes of the Lord, seek the miracle he had in store for us. I see miracles in our lives every day and lately I have been noticing the many children around us that are also suffering. There is one little girl who was supposed to go home last month but ended up getting worse the week they were supposed to leave. The Doctors are trying to tell the parent that she's getting worse, and the parent refuses to accept it. The daughter asks her parent what she can do to get better... And it breaks my heart. And I think, she needs the miracle more than we do. They are in my prayers.
We receive miracles when we have faith because miracles were intended to be a proof that Jesus is the Christ. We have to correct our sight, see what the Lord sees, instead of only focusing on what we want, focus on what the Lord has in store for you. What you think you may need may not really be whats best for you. One day we will see the BIG picture and understand all and witness the pure love that the Lord has for each of us.
I have not figured it all out but I am starting to better understand the words of the Lord. And I truly hope that I have not offended anyone in my quest to seek understanding and answers to my own questions. Thank you to all of you who have endured great loss and been great examples to me in keeping the faith and trusting in the Lord.

Steps Forward

Chillin' in the bed... Look at that belly... yep it's smaller :)

You would think I caught them off guard...no they knew I was taking pictures and refuse to just smile nicely for a picture. :) Henry is sitting on the 'lily pad' on the bottom of his pole. And those scissors aren't sharp... and I know she looks like she needs a hair cut.. but she decided she wanted to grow out her bangs like Mommy.

In the last few days...

Henry's Cyclosporine has been decreased

So has the morphine, 1 ml every other day

Lipids (fats) have been turned off... he's on a calorie reduced diet

Tested positive for Rhino virus (cold), just has a runny nose and the sneezies

Discovered the floor is as slick as the tub, so he can scoot along the floor

Acquired a "lily pad" for his pole so he can ride around with his pole

Feeds have been increased to 35 as of today

And the PN (IV nutrition) has been turned off completely!

Joel worked his "Dad" magic and convinced the Doctors he was right, not the nutritionist

So hopefully in the next few days we'll see improvements in his liver functions along with a decrease in the over all size. He's only hooked up to one of the two lumen's on his Hickman line. He's so active and happy most days, and LOVES chasing Elizabeth around. Although they hate to share toys they really enjoy having a playmate in one another.

Oh yeah and today he said "Meow". First word, and Grandma is my witness. And no he won't say it again. Although he was mighty proud of himself. He LOVES his nurses and he says 'Hi' to his favorite cleaning lady, snack lady and Doctors. He blows kisses to all the girls but stays loyal to him momma. :)

He Finally takes up a large portion of the bed. In fact they had to start calorie restricting his diet because he's a few kilo's over target weight. Which is awesome! He really loves his snake! You're right he is mad, but it was so funny that he would wrestle the snake when he got mad.

Daddy climbed on top of the crib to get this picture and a few other's we'll post too. Henry loves to play with Elizabeth's hair, and I think he was checking out her battle wound. She was explaining to Henry yesterday that her ouchie healed but his hasn't gotten better yet. He still has a big ouchie on his back from the bone marrow biopsy. We check it every day to see if it's all better yet. They are so very conscious of the others pains and ouchies.

Loves!

Crazy Henry! What a character! He's all about his tongue right now. As you can see.

Figuring Out Life

I don't profess to have it all figured out, but I'm definitely learning as I go, as we all are. I apologize ahead of time if this post turns out to be another ramble that doesn't make sense but I've been pondering on this for a few days. And I always get great comments that help me further understand my own thoughts.
I was reading in the Book of Mormon, Words Of Mormon chapter 9:21 "Behold, I say unto you that whoso believeth in Christ, doubting nothing, whatsoever he shall ask the Father in the name of Christ it shall be granted him; and this promise is unto all, even unto the ends of the earth."
Verse 27 "O then, ..wonder not, but hearken unto the words of the Lord, and ask the Father in the name of Jesus for what things soever ye shall stand in need. Doubting not, but be believing, and...come unto the Lord with all your heart, and work out your own salvation with fear and trembling before him."

My question is how do we ask for what we feel we need, nothing doubting, and still accept the will of the Lord? We were given the gift of agency in this life; the freedom to choose right and wrong. On top of which I believe life isn't one straight line, more a web of choices. We can be headed towards our Lord and Savior or away from him, either way it's our choice. I don't think the Lord expects us to sit and wait for life to happen and say, "it's the Lord's will". We are expected to make choices and learn and grow.
There are things that the Lord has in store for each of us and whether they happen now or three years down the road, they will happen. We will have numerous experiences through out our lives to help us grow and understand the Lord and our purpose here on this earth, ultimately to help us become more like Him. Remembering that we have control of how we choose to handle every trial and circumstance we face. We can choose to learn from it and grow or not.

I knelt in my room and prayed fervently for Henry's marrow to recover, whether it be his or the donors; that his bone marrow would be able to produce all the cells his body needs. I gathered all the faith I had in my being and poured out my heart and soul to the Lord. I didn't explain all the reason and perhaps excuses I could think of for Henry getting better. I simply and very humbly took the Lords advice and asked with all my heart nothing doubting that the Lord would heal Henry, that over the next month he would be made whole. I wasn't sure how to ask the Lord for what we felt was needed and at the same time accept his will.
So I continued to pray and asked the Lord to know my heart and grant us this miracle. That all who are following Henry's story may know that the Lord does still bless his children with miracles. He is the same yesterday, today and tomorrow. He healed the sick and the lame and the little children. I know miracles happen today, every day. And I have to tell you the day after I sought the Lord's healing power, Henry's liver shrank. It may seem like a small thing to you or I, but I knew the Lord was showing me that he heard my prayer and was showing forth his powers. Another scripture I would add, Ether 3:5 "Behold, O Lord, thou canst do this. We know that thou art able to show forth great power, which looks small unto the understanding of men."
By the small and simple miracles that I see every day I know in my heart Henry will be made whole again one day. And I hope that all of you are able to see that the Lord does love each of us and he blesses us with miracles every day. Sometimes it takes faith to be able to see the miracles, but simply looking for them is an act of faith.

Silly things that I'm thankful for today...

Henry being positive for VRE; we stay in isolation so I don't have to be overwhelmingly worried about him getting the flu.

The funny things kids say.."Elizabeth grabbing her chest and saying Mommy I think they're getting bigger like yours!" hahahahahahahahaha

The PBJ song by Primary Colors (Mormon Mom Cast blog that provides the music)

Elizabeth's Lambie, "my little Henry" she calls it.

Crossword puzzle book that's too advanced for me so I have to cheat to complete the puzzles.. but I justify it by saying that I'm learning.. so it's not cheating!

Sugar Free Hot Cocoa (it has to be good for me because it's sugar free)

Elizabeth learning about prayers and why we say them

Newspaper crossword puzzles because they make me feel smart, you know the Monday, Tuesday ones that are easy.. :)

Sunshine, even if it's not Hot outside it brings me joy! :)

My little "country girl"

Henry's laugh

Some More fun Pics

He's so handsome in this shot, and yes he plays on the computer every night and at 2am-4am every morning. He loves to listen to the music and hit all the buttons, very hard!
Feeding Daddy Oreo's, Daddy shaved his head and now Henry has more hair than he does. :)

This is Henry giving Daddy "noggin" like the turtles on Nemo. He loves it! As you can see Henry's hair is actually getting fuzzy and coming in, for now he has longer hair than Daddy, but Daddy's hair grows in really fast!

What do you want? I gave you all the cookies and a "noggin"! hahha

Fish lips!

I know it looks a bit off on the color I was just messing with the saturation, He just looks so chubby and cute!

Giving Henry Kisses

This one was today, with his awesome shirt! He's starting to say "hi" to everyone and wave. He gets really excited. Yesterday he had his bone marrow biopsy and skin biopsy procedure. The Doctors upstairs all got "Hi's" and waves. Then he had to prove he was stronger than they thought by refusing to go to sleep after getting the anesthesia. The procedure was very brutal due to the fact that they couldn't get any bone marrow, too hard, which probably means too much scaring. But they had to try several times, which equates to lots of pain. He's much better today, but he was so tired last night that he slept hard...requiring help from the blow-by. The nurses were a bit worried but I convinced them he was just really tired. I could pick up his leg and drop it and he wouldn't wake up. So he got a decent night of sleep. :)

Tomorrow is our meeting with the Doctors and hopefully we'll get a better understanding of what's happening and what we do next. Joel and I are trying very hard to listen for guidance from the Spirit. A lot is going to be changing in the next few months and as much as we hoped to be home by Christmas, it looks as if that may not happen.

I've thought a lot about the situation, hoping for the great miracle to be completely cured, and then I think there are other families out there than may need it more than we do. And there are so many parents that have children dealing with health issues their entire life. Before we came to earth we lived as spirits with our Father in Heaven and we knew we would face pain and suffering, trials and we willingly volunteered. It's easier to accept the pain and suffering in your own life but when you have to watch a child or loved one go through it, it's much harder to accept. I feel like he's endured enough and shouldn't have to go through more, but there are so many kids in worse condition, enduring much worse. I think often of the man who brought his child to Christ and asked him to heal his son. Christ asks him if he believes and he says "yea Lord I believe." Christ looks at him and the father says "Help though my unbelief." I feel like the father sometimes, worried that I don't believe enough. Or I think of Job, a man full of integrity and trust in the Lord with perfect faith. While his friends wanted him to blame God, he refused, he had incredible faith in the Lord and his plan and love for us. I don't blame God for Henry's illness and the drastic changes in our life. I know that we learn through trials, and grow closer to the Lord if we turn to him. I know he loves us, because he endured all our pains and sufferings so he could comfort us and aid us in our time of need. However, I still complain and when things don't go the way I've planned it takes me a while to accept them and focus on the bigger picture, or to be focused on trusting in the Lord. I don't have the faith of Job, but I'm definitely working on it!

I love my little man and I wouldn't trade a minute of the last year and a half. He's taught me so much and has brought incredible joy and peace into my life. Yes I wish he didn't have to endure the pain, but the Lord sees the big picture and I'm trusting in him.

Change

Cutest Little Boy EVER!! I can't believe how much he has changed!
And his cute hair! I know I think I offend Joel when I tell him how much I miss his blond hair. I do love that he looks more like his daddy but I miss this hair! I guess I am just going through the mommy process of adapting to the drastic change over a short period of time.

Okay he was a bit scrawny and he's much chunkier now which is great!

Dr. Elizabeth at work again.

Henry wanted to make sure he was in the picture. He giggles so much when Elizabeth is silly with him.

Can you believe how much has changed!!

And now Joel and I have to decide whether he has to go through another transplant.

All the pain and hard days all over again!! UGH.

I hate more than anything watching him build up his strength and his ability to move and eat and just his over all progress get better each day knowing that if he gets another transplant they are going to knock him down and he'll have to work his way back up again!!!! Hasn't he been kicked enough?! Why does he have to suffer so much and why does it have to happen over and over again! I hope and pray he knows how much strength he has when he gets older. The Lord has blessed him with so much strength!!

Computer Time

Got his drink of choice and listening to his favorite music
Now munching on something and listening to music

Getting hypnotized by the weird kaleidoscope of pictures while listening to music

And falling asleep to the music... all while sitting in his favorite chair in front of the computer

~Words of Encouragment~

"But if by a still, small voice he calls, to paths that I do not know, I'll answer, dear Lord, with my hand in thine: I'll go where you want me to go."
"O Savior if thou wilt be my guide, Tho dark and rugged the way, My voice shall echo the message sweet: I'll say what you want me to say."
"So trusting in thy tender care, and knowing thou lovest me, I'll do they will with a heart sincere" I'll be what you want me to be."
H.270

"Why should we mourn or think our lot is hard? Tis not so, all is right. Gird up your loins fresh courage take. Our God will never us forsake. All is well! All is well!"
H.30

"Let your heart be not faint now the journey's begun; there is One who still beckons to you. So look upward in joy and take hold of his hand. He will lead you to heights that are new."
H.127

My favorite words of comfort are either found in the scriptures or in the Hymns! While things look hard, or the end is so far from sight, I cannot give up hope and faith in the Lord. He has great plans for Henry, and while I cannot see every curve in the road, I know the Lord is carrying me through. All is well! All is well!