Saturday, January 31, 2009
Thursday, January 29, 2009
Our Mexican Snowman. The only twigs we could find made him look mexican so this is our snowman Pablo. :) Joel and I had a snow ball fight that night too and I have absolutely NO aim... don't ever put me on your team. Then Elizabeth met us outside with Grandpa and we made a snowman. She was sooo excited.
Elizabeth loves to read books in the window seat at the hospital. And she loves her cartoons. She has this new routine when she comes to see Mommy and Henry. When they get close to our room, Elizabeth turns to Granny Annie and says "you in time out" and then she comes to the door and knocks. When I answer the door, Annie is released from time out. Then after giving me a hug, she wants to watch cartoons. If she needs something and the nurse happens to be in the room she tells them to get her whatever it is she needs. UGH... and today I thought she was calling our male nurse Spongebob because she didn't know his name. So I tried to tell her to ask what his name was and she said no.. spongebob. He then showed me his spongebob figurine that's attached to his stethoscope... Sooo funny. Anyways she's getting the hang of it, and I swear she's gonna be an actress when she's older because she puts on quite a show when she has to leave. We hug and I tell her why she has to leave and she says okay and stops crying and starts walking to the door where Annie is waiting. The moment she gets to the door she turns around crying again and wants mommy. She breaks my heart every time. But some of it is a bit dramatized. However, by the time she reaches the outer doors of the SCCA unit, she's happy and running and laughing again.
I know it's been rough on her, but she's so funny about it sometimes. And she is so quick to learn new things and understand how things are suppose to go, how we interact with other people and all that. Such fun to watch. Henry loves to have his big sister here, as long as she's not trying to crowd mommy's lap. They are such fun! Can't wait to see them grown up together playing and all that. I hope they are great friends!
Tuesday, January 27, 2009
Isn't he darling!
Monday, January 26, 2009
This is the tent Henry has to be in during his treatment for RSV. The first go round was a bit tramatic! He spiked a fever and we couldn't give him the tylenol for another half hour and then the nurse pulled off the wrong end of the hose so Medicine was blowing into the room. It was crazy! Hopefully after his methadone tonight he'll be more able to take the medicine. He's suppose to get his meds through a face mask that blows the meds into his mouth, but babies this age don't necessarily appreciate the mask. :) So he has a tent and an oxygen box. A bit suffocating to say the least!!!! Poor Henry. He's such a trooper.
Henry got a fever last night at 5pm. Dinner starts at 5pm and Elizabeth had just woken up from a nap. So I say to my mom, lets all go together because he already had his labs done earlier that day and all they needed to do was draw blood cultures. Four and half hours later.... and they finally tell us we're being admitted and mom and Elizabeth go back to the 'Donald House' for some food. What a night!
It's going to be a hard five days. But hopfully he'll get through this with out many more difficulties. Elizabeth is watching Cartoons and getting into everything she's not suppose to. Henry is crying he's calling for momma. Better get going. I just thought I would let you all know what's new today.
Sending lots of Love to all!
Saturday, January 24, 2009
Daddy, Elizabeth and Marley the Dog on Halloween. We were at the Ronald McDonald House and it was soo much fun. Joel scared all the little kids but had tons of fun.
Every day Therapy dogs come in to visit the kids here at the house and this one is my favorite! Isn't he cute.
Friday, January 23, 2009
P.S. This pic is old, he doesn't have the NG tube in his nose anymore, but I love this pic of them togther. She's such a good big sister. :)
Thursday, January 22, 2009
We have one week to try and fatten him up or they will put the feeding tube back in his nose. I'm frantically trying to get him some weight gain. He's had ice cream, pudding, chocolate, anything that will give him some weight.
They are also increasing his mp6 (the at home chemo that he gets MWF) so that his body might be able to go three weeks between his Vinblastine chemo. Every time he gets the Vinblastine he has to do a steroid blast as well, for five days, and since the steroids are already destroying his bones they really think it would be best for him to go three weeks. However we are still waiting to see if he's really responding to this treatment plan. His rash is a bit better in the diaper area but spreading in small amounts onto the trunk of his body again. Besides which they think that all the fevers could just be signs of the LCH flaring, or attacking the body. We are still holding out hope that this regiment of chemo works, otherwise we go to harsher chemo and he's already being adversly affected by this regiment. Only time will tell.
The good news in all of this is that hopefully if he has been in chronic pain the Methadone will help him. We are being scheduled to see the Orthopedic doctors to get their opinion on the vertabrae fractures and if he feels they will heal on their own, we will be able to start physical therapy with Henry. He's lost so much strength through this all, he's stopped rolling over or standing much or reaching for toys. So we'll get to work on that and hopefully get him moving around a little more. It's hard to believe he's almost one. Time really has stopped here and I forget how old he's getting and treat him like he's still 4 or 5 months old. Crazy!
It's a bit overwhelming I know and sometimes I just get a bit stressed out, but the Doctors are doing all they can and hopefully this will all work out for him. The Lord is truely blessing us and watching over us. We have so much to be greatful for and hope for. Thank you for all the prayers. We love you all and miss home.
Thursday, January 15, 2009
Tuesday, January 13, 2009
Lauire (Lisa's Mom) thought I should post some pictures of Elizabeth so she did not feel left out so here is a picture of Elizabeth as well. Elizabeth is doing great, she loves to watch Dora on TV and keeps us busy following her around cleaning up messes. The good thing is she is potty trained, the next step is stopping her from using the men's restrooms.
She loves her hats, and the last picture is her first time sailing!
Monday, January 12, 2009
Elizabeth spent the day watching cartoons and eating snacks with Granny Annie. She is such a sweet girl. She's growing like a weed and learning to understand more of what we ask her and how to better express her feelings. She misses home, her reading room loft and the latter.
While all we miss home, but I am so much more comfortable and at ease here. The hospital is close enough we don't worry about the ER room runs and the Doctors are so great, we really trust them a lot and that really helps my peace of mind.
In Church on Sunday we sang Nearer my God to Thee and there's a line in the last verse I think about the things the Lord sends us. And no matter how tough things have gotten here I have truely been blessed to recognize the incredible blessings that fill our lives. Family and friends, and much much more. Thank you for all your prayers and love. We truely feel it and recognize the power of prayer and the priesthood. How greatful I am every day to know and understand the plan of happiness and the joy the gospel brings into our lives.
We miss all you guys at home! Enjoy that freezing weather for me and I'll enjoy the Seattle winter here! :)
Shortly after Diagnosis Henry became ill and had to be Hospitalized in Alaska. Things got worse and about 5 days later he had to be airlifted to Seattle Children's Hospital. The Doctors in Seattle specialized in rare Cancers and provided Henry much better treatment and after a few weeks he was stable and eventually was released to out-patient treatment. He had to stay in Seattle and even though we had appointments and treatments about every other day he was able to stay with us at the Ronald McDonald House.
He was put on Chemotherapy treatment and things seemed to get better. Just before Thanksgiving we were released to go home to Alaska to continue with at least a year of home based Chemo Treatment with Doctors in Alaska taking over and overseeing. Unfortunately for whatever reasons Henry's health did not cooperate and Christmas Eve; Lisa, Henry, and Elizabeth flew back to Seattle. Bone marrow tests revealed the LCH had progressed and was in his bone marrow. Joel flew down on New Years Eve and joined everyone in Seattle. Since then Henry has seemed to progress well and is doing better than when he arrived. Every day has its challenges and seems to be different. Some times Henry is as happy as can be and other times he is in a great deal of pain.