Friday, February 26, 2010

Flight Simulation Class

In our efforts to prepare for a flight home, Elizabeth and Henry are participating in flight simulation classes.
The initial excitement gone, and Elizabeth is wondering how long this is going to last and if she can get out. Henry as always.. is chill. However, this simulation didn't last the full three hours. Only about three minutes. :)

And our final aspect of training... take off... a bit extreme, but they wanted to lay down in their seats.
In all honesty I was just cleaning the seat covers and making sure the straps were set right. But a flight course seemed a good idea.

Sunday, February 21, 2010

Sunday Best

Cutest Suit at Target that I couldn't resist!
Showing Mommy that they can be quite and sit still, but only when they want to.
He is such a little man and the suit just makes him look so much older!

I make it look good, I know!


This is a "normal" weekly routine for Henry.
Mommy used to have Henry wrapped tightly in a blanket to change Henry's dressing. However, I eventually learned that the screaming was due to the lack of movement in his arms, not the actual changing of the dressing.
1. Clean the area around the entrance sight.
(This is his Hickman line that goes into his heart valves)
2. Cleaning the actual line that is under the dressing.

Henry is awesome at holding still and helping. He loves to hold garbage and then throw it away for me.

3. Let area dry and then apply the adhesive "stuff"
Henry's thinking, "what are you looking at? Isn't this what every 23 month old does?"

4. Apply bio-patch and then coil the line up and tape it down with tegederm.
And yes, Henry is doing a crossword puzzle while I am changing his dressing. I must be getting too slow for him!

Aren't we done yet Mom? Seriously?
So, No, Henry is not "normal" but he's pretty used to this life style and he's pretty awesome in my book!!!
P.S. Nurse Katie if you are still reading this blog, a little man would like to come and see you before we leave for home! Some how we have to find out what days you're working. I know you're thinking I should already know what days you work... but I am not sure... so we're trying to get over there to say good bye!

Thursday, February 18, 2010

Busy Busy Bee

Well honestly we aren't THAT busy, but we've been working on cleaning out the apartment and ditching stuff that won't fit into the bags. I have four bags that I can take on the airplane with me and if it doesn't fit it can't come home... well except for the six boxes of essential things I had to send home!
I have so many fun videos that I want to post, but haven't had the time to sit and do it... soon hopefully. Henry is getting so big and doing so many silly fun things. For example, he was body slamming me and jumping on top of me at 1:3o am. Laughing hysterically and saying "uh-oh" when he falls down. Another evening he was playing hide and seek with a stuffed animal and when he found the bunny he would get excited and scoot around in a circle like a dog chasing a tail!! So funny! He's quite the character! He is now old enough to defend himself verbally against Elizabeth, and he is very good at tattling on her too. He doesn't talk, but he is very good at his body language communication. Silly kid!
So here's our home plan:
Weekly visits for lab draws and appointments with speech and physical therapy, as well as the nutritionist. Then as his counts do better he will spread out his visits to every two weeks and then three.
The Hickman line is staying in until May when we come back down to Seattle for a check up and meds. Then I won't have to worry about Henry getting a fever; with the Hickman line (a central line that goes to the valve of your heart) if you get a fever you have to get to the Hospital right away and get blood drawn to make sure there isn't an infection. And if there is you get antibiotics for a few weeks depending on the type of bacteria, or you get the line pulled if it's really bad. Anyways, after he gets the line pulled I don't have to worry about that anymore and I won't have to make a midnight run to the hospital if he gets a fever. I can do three months!!!
We'll go back to Seattle again in August for another three month check up and meds. We will probably make a visit to the Seattle Cancer Care place for Henry's 1 year post transplant visit. HOORAY! Although Henry is only 75% Henry and 25% Donor, it's working to keep his body strong and the disease gone! They say that children are allowed to go to school 1 year post transplant. So after that one year mark I won't have to be soooo much of a germ-a-phobe! And we'll get to go to all three hours of church again. Wow!
So that's what is happening here!... I am so sad to be leaving Seattle since it is completely AWESOME weather! Sunny and warm and green! The trees are budding and the flower are coming out and I'm NOT looking forward to winter again! Henry sure loves the outdoors he's learning to escape with Elizabeth's help and would spend all day outside even if his fingers froze off!

Video's to come soon...

Thursday, February 11, 2010

clicking my heals three times...

We are having a teleconference tomorrow with the Docs in AK. We decided that for a while longer Henry should go through the HemOnc Clinic at Prov. While we wanted to get his line pulled, the Docs and I decided it would probably be better for Henry if we kept it in for another three months. I can handle that. We have tickets I think, but I'm not going to divulge the date, I just don't want to jinx anything... I'm a little nervous that somethings going to happen and we'll have to change the ticket date. So I'll just let you all know we're coming home very soon!
It is very entertaining going through toys with Elizabeth, what should we get rid of what should we pass on what do we throw away... everything that we're giving away is usually Henry's and everything else is suddenly the most important toy in her life!!!! Luckily we have a lot of toys that can be cleaned and passed on to families here at the RonDon and the ones that the kids have trashed we can get rid of, it's a bit harder when it comes to stuffed animals, I'm a closet junky when it comes to stuffed animals. I have sentimental attachment to them, they remind me of certain trials through out our treatment, or times we were celebrating. I have tried to keep in mind the whole $$$ per suitcase and have done pretty well and passing on the stuffed animals. There are a few that I just can't quite part with yet, sorry honey!
We've been trying to get Henry to drink more, about 8oz of milk per day. We're still trying to figure out the whole allergy thing, like I mentioned in prior posts, but we're starting him on Lactaid to see if he can handle it. He isn't interested in drinking anything other than juice... but we're working hard on that. He's dropped some weight, but is still in a healthy weight range. (Although he looks sooooo skinny!) Tomorrow we'll weigh him again and keep moving forward with out the tube!!! WAHOO!
Mentally I'm freaking out!!! Trying to convince Elizabeth we live somewhere else, and that snow is a good thing... its spring in Seattle, I Love Seattle, why does everyone complain about the weather here?! But it's time to move on to another phase of life and I am looking forward with anticipation to what the future holds for us.

P.S. Elizabeth is trying to teach Henry how to do somersaults! They are so fun!!!

Sunday, February 7, 2010


I am grateful that my Savior knows my strength and my own potential. The Lord promises us that we will not be given any challenge in life that we cannot handle, so I assume that every struggle is something that I must be able to handle, or at least the Lord knows I can do it! I'm glad someone does. I realize many times how blessed we are that Henry is getting stronger and healthier and that really there is no reason for me to complain. I am so grateful to have my mom and dad here helping. Mom has taken over feeding duty for Henry, because she's the only one with enough patience... I'm sure the Lord thinks I can handle it and perhaps I can, but for now I'm grateful I'm not having to do it alone!
Thursday Henry pulled his NG tube out, the tube in his nose that pumps formula into his stomach. Instead of replacing it, I decided we should try keeping it out. He's been doing great eating the last five days or so. He eats yogurt for every meal and baby cereal with honey, and yesterday he ate spaghetti and ground beef chunks and loved it. However, pretty much every meal we have to fight to get Henry to eat. Because he had the tube in for so long he has an aversion to eating. His body forgot how to chew or swallow, basic eating things, and truly I don't think he knows what 'hungry' means. He gets really fussy and you can tell he's hungry but he doesn't correlate the two..stomach is hungry I should eat... Not only do we have to fight with him about the foods, we have to worry about the allergy as well, and I'm still not sure exactly what the allergy entails. He can't handle milk, but can handle yogurt, somethings that are made with milk might set him off, others we're not sure about. And usually he wants whatever he's not supposed to eat and doesn't want anything to do with non milk products.
I know there are plenty of you mothers out there dealing with more than trying to get your child to eat, I'm just grumpy today and am venting.... You mothers are my hero's, you have great faith and you deal with great amounts of stress and trials and you inspire me to be more patient and loving with my own children. THIS TOO SHALL PASS!!!! I just have to keep telling myself, the Lord has confidence in me, therefore I can do this!

Wednesday, February 3, 2010


I was a bit depressed that J. was packing up yesterday and leaving and I couldn't go too. However, it won't be much longer. I read Pres. Uchtdorfs talk in the Jan. Ensign, "Hold On" and LOVED it!!! I told my mom I wish I had read that talk a year ago! It was very comforting, but when I thought about it, the Lord has continually expressed the same feeling to my heart and mind over the last year and a half. Always in my heart I felt the Lord encouraging me to just hold on a little longer. "If ever you are tempted to become discouraged or to lose faith, remember...Hold on a little longer. You can do this! ..Even when things look bleak. Know and remember this: the Lord loves you. He remembers you. And He will ever sustain those who 'endure in faith to the end."
Talked with the Doctor today about what we need to do to get outta Dodge....we scheduled a CT scan, ultrasound, no bone marrow (thank goodness) and some med tests to eliminate some more meds. Looks like we could be home by March. We're still discussing removing the line, but I'm hoping to get it out before we go home. I'll get to learn how to do shots at home for his Darbo med, and then we'll be returning to Seattle every three months for some bone medicine. We're starting the three month schedule next week which includes three straight days of 4 hour infusions. But it's only every three months, so less pokes every month if we do remove the Hickman line.
Henry's platelet count has been holding steady in the 30s and every few weeks it goes up a few points. His Hematocrit is still dropping, but ever so slowly which is great progress. Everything else has been just awesome! Although yesterday we did have quite a mishap at the park. Henry LOVES the slides, he scoots right off the end like he's gonna start running around.(He's close, but not brave enough to go out on his own) Anyways he went down this really steep one and leaned too far forward. Well Grandpa saw him falling and reached out to catch him, his fingernail sliced that little lip of skin between the lip and the gums.. ya know above your two front teeth. Well he bled and bled and bled and my white shirt was covered in blood! Henry's sweat shirt sleeves were covered and I was freaking out!!! But after much convincing, decided he would be alright. We watched him closely and after what seemed like forever the bleeding stopped and it's healing nicely. I was pretty rattled with so much bleeding, I thought he doesn't have that much to spare he's just gonna dry up!! Silly Mom I know! He recovered quicker than I did.
So I'm trying not to pack too quickly... but a few trial runs to see how much stuff we have will definitely occur.