Thank you Cache Valley!

Wednesday, October 27, 2010

Day +17, +18, +19

Monday they let us out of his room for the first time since Sept. 30th! We got to go for a walk around the hospital with instructions to steer clear of people and make sure to wear the mask. Of course we had to break out the new spiderman hat. It was so fun!
We got to visit the life size Spiderman! Sweet! Aiden is doing great. He has been eating a little bit and they are starting to switch most of his meds over to oral. We will still go home on 2 that I will run through his central line. We will also be doing TPN (IV nutrition) at home through his line! but hopefully that won't be for too long. Mornings are still a little rough but he is doing great and they are continuing to take away meds like the adavan and the benadryl.
He even got to ride in the Wagon. We went over to U of U and got a hot chocolate and rode in the elevator. It was an adventure. Day +19 we had some great news! Aiden's platelet's engrafted so his body is making it's own platelets - no more platelet infusions! YAY! Mom came up Wed and stayed with Aiden so that Brent and I could go to Logan and pack up the stuff Aiden and I will need for the next 90 days. We will be staying at the Ronald McDonald Main house in their long-term stay apartment. It is all brand new and super nice. It was a quick trip to Logan and back. Now all we have to do is organize the apt and disinfect everything, grocery shop and we will be all ready to be discharged. The girls are so excited to have Brent coming home! The docs have told us Fri is the day! Thank you so much for all of the prayers and faith and love! You have all been essential and to our success and we couldn't have done it without you! We are so grateful! I will continue to update the blog as we have news. For the first little while we will be going to clinic at least twice a week for labs and check-ups so we will probably have news often. We appreciate your continued support and know that Aiden will keep up his great work kicking IPEX trash and building this new immune system. WE LOVE YOU ALL!


Day +16 - Happy Birthday Isaac!

This post is dedicated to our son Isaac Thomas Welsh. Today is his birthday. He would have been 5 this year. He passed away from complications from IPEX on July 31, 2007. He was our sweet boy and little buddy. We miss him so much! We try to celebrate his b-day every year and this year while we didn't get to let balloons go for him, we did get to sing happy birthday! He is one of our special angels and we know that he is watching over this adventure we are on with Aiden. It makes our success with Aiden so much sweeter - he is just flying! How blessed we are to have them both in our family forever! We love you little buddy!

Day +15

Today was a great day! Aiden and Brent had so much fun playing and Aiden is feeling lots better. No fever at all today and his breathing has slowed down. His rash is mostly gone and he is doing amazing! The docs say we can go home sometime next week!
Aiden loves to climb under the crib and play with his toys. He really loves the stickers that Aunt Katie and Uncle Dave brought him. His ANC is up again! Keep growing those soldiers buddy!
I got this picture from Brent with the tag "bald is sexy"! So now we have a little baldy boy! And he is cuter than ever. I told Brent that we should call him cue (not to be maistaken for Q from 007 - but cool just the same). Good thing that hair grows back and he looks so cute bald!
It rained today in SLC! Aiden loves to sit in the window sill and look at the birds and the people and the rain! It is the closest he has been to outside in quite awhile. Until next week when they let us go! We can't wait.
The girls and I have been having lots of fun today too in Logan. We went to Lindsey's reception and had lots of fun visiting with all of the cousins that came to the wedding! It was so good to see everyone and Lindsey looked beautiful, the ceremony was wonderful and they are a super cute couple! What more can you ask for? Life is good!



Day +14

"I'm gonna get ya!" Aiden had a much better day today! He still felt a little sick in the morning but his fever broke. He did have a little bit of a low grade fever at night but was good the rest of the day.
His rash is also better. He is feeling better every day. His ANC was up again today to 2400. Still going up! So good. 2400 is a normal ANC level. So that is GREAT!
"Hey everyone! I love my spiderman shirt and I am doin' good." Aiden and Daddy are having lots of fun together which is good cause Brent is jealous that I get to sleep in our cozy bed at night.

video
Aiden is getting lots of fun stuff for Halloween from all the volunteer groups! They are so great and really brighten up the kid's stay in the hospital. This light is one of the fun things that was brought in and he loves it! I got this video and was so happy to see how much better he is doing too!

Day +13

So today was a little sad. Aiden had a fever and is breathing really fast. He also has some rash over his body and isn't feeling really great. The docs tell us that this can be normal when you engraft. His immune system came online so fast that his body is trying to keep up. Today his ANC was up to 1900. So it doubled! Way to go little buddy.
Aiden hasn't been wanting to eat solid foods either. The docs told us that some of the older patients that have had transplants say that they have felt nauseous for a couple months afterward. He has a lot of really thick mucous that has been bugging him too so he has been throwing up in the mornings. He still seems to be in pretty good spirits though! Way to be a trooper buddy.
I am leaving to go to Logan today to attend my cousin Lindsey's wedding! Fun fun for me! I get to spend some time with the girls too! Daddy is so good to stay and take care of Aiden! What a good man he is! I don't know what we would do without him.

Wednesday, October 20, 2010

Day +12 - ENGRAFTMENT!!

When the docs came in this morning they told us that his level was 800!!! Which means that he has engrafted!!! Yay we are so excited. Way to go baby boy! This is his new Spiderman shirt to celebrate the occasion. The docs said that if everything goes well we will be discharged beginning of next week. Aiden and I will still be here in Salt Lake and staying at the Ronald McDonald House's new long-term stay apartment and Brent will be going home to be with the girls and get back to work! They will come and visit us on the weekends so long as everyone is healthy!
Aiden isn't feeling so good today. He has had a pretty high fever and been really tired. This is also normal. Because the body suddenly has an immune system where there hasn't been one it goes into overdrive trying to "fix" everything. So he feels like he has a cold. He is still pretty happy though and he loves his new shirt.
Thank you all so much for all your faith and love and prayers and unwavering support! We love you all so much and know that we have been so blessed to have you! We couldn't have done this so well without you! THANK YOU!

Day +9, +10, +11

Aiden is doing great! On day +9 the docs told us that his white counts were 200. While they don't technically count it yet because anything under 300 can fluctuate a lot. But we are really excited because there is some activity that shows that the new marrow is working! YAY Aiden!!
As you can see from all the pictures Aiden has a lot of bruises. His platelets are really low and that is why he is bruising so easily. We didn't even know that it was a really common thing so the first time he bonked his head in his crib and it immediately turned into a big goose egg bruise we were kinda surprised. He has been having transfusions about every 3 or 4 days cause platelets are one of the first things they burn through when the body isn't consistently replacing it. Crazy!

We are doing really well and so excited to see some activity in his white cells! He did spike a fever on day +11 at night so they are treating it and did more blood cultures to make sure it isnt an infection! Fever is also common when you engraft so we are going to keep our fingers crossed that that is why he spiked a fever.

Monday, October 18, 2010

Day +8

So one of the new favorite things to do is to climb under the crib, play with the toys and then climb down. It makes me nervous cause he likes to climb out head first onto the hard hospital floor. But at least he is keeping his stubborn independent spirit :) He is doing ok today. Brent and I even got to sneak away to the sacrament service that they hold here in the hospital for familys. It is amazing how strong the spirit was at the meeting. Even though it was only a half an hour it was a wonderful peaceful half hour. I thought that I would get a new and updated picture of his friend and constant companion. We now have 5 pumps that run for at least 18 hours out of every day with meds and lipids and TPN (IV nutrition) and often platelets or blood. It is kinda bulky and he has about that many tubes connecting him to it. Crazy! Needless to say it constricts movement. Things are still going well. He really doesn't eat much at this point. He has one mouth sore but considering he could have them all over in his mouth, and throughout his GI tract we are feeling pretty positive about it. Haven't seen any hair loss at this point or any new cells but that is also normal! We are good and so is Aiden.

Day +7

Look who else came to visit!! Uncle Mike and Aunt Nichelle! Obviously Kaitlin finds the TV much more interesting than having her picture taken. Before we met with Mike and Nichelle, the Brent and the girls and I went to eat at the Cheesecake Factory! YUMMY! So good. I told Brent that we should have waited until the girls weren't with us so that we didn't have to waste the deliciousness on them :) They dont truly appreciate it anyway. But they are just too lucky.
We met M&N at the LDS Conference Center downtown and decided to go see the movie in the Legacy Theater "Joseph Smith:The Prophet of the Restoration". I cried this time too! It is such a powerful movie and was nice to be able to do something completely spiritual. The girls went home today. Darren and Lisa took their family to a REAL soccer game and took the kids home with them. We are so glad that we were able to spend so much time with them.
They started Aiden on steriods today (this is a normal part of the process that helps keep GVH from flaring) and he is raging! I really hate the way the steriods effect him but at least they helped with the fever. No more fever is good but he continues to be uper grumpy! At least he has some energy and has been playing and coloring and walking with his new walker. I will have to put a video on of that it is freaking cute!

Day +6

So - How to Train Your Dragon came out on DVD today and so we had to rush to Walmart and buy it. Kaitlin and Hailey and I saw it twice in the theaters and loved it. Brent had never seen it and so he wanted to get it just to see what all the hype was about. I really love this show :)
We also went to Gateway today while Aiden was napping. Gateway is a cool mall! We ended up getting Hailey a bunch of new pants cause all of hers that we got for school are too big. Lucky her. That means KP gets a bunch of new pants too cause she gets to wear all of Hailey's. At least there is a Rocky Mountain Chocolate Factory there so I got to get a caramel apple!
Aiden isn't feeling very well today. It was a rough night and he has continued to have a fever. The docs told us that he has a virus in his blood stream. (CMV?) About half the population does and it isn't a big deal unless you have no immune system. They are treating it and they will until his immune system is strong enough to fight it back into submission. They expected this so it is "normal" and he is doing well still. He also had his last mini dose of chemo today and they doubled up on the nausea meds and gave him some pain meds also so he took a really great nap. He needed it! Please keep up the faith and prayers!!


Say +5

SURPRISE! Look who came to visit! Uncle Dave, Aunt Katie and Emmy!!! We were so happy to see them and they came bearing gifts.
"Mama - what is this thing?" Emmy is walking! We didn't even know it. Hey, I know that we are supposed to keep everyone update but that goes both ways! You guys have to keep us updated as well so that we don't feel so out of the loop! Shame Shame!
Playing with uncle Dave! We ended up going to lunch while Aiden was napping - He had a low grade fever this morninr which they tell us is normal when the counts are low so they did a bunch of tests to make sure that everything was ok and there weren't any crazy bacteria or viruses that we need to worry about. Everything looks good so we just treat the fever!
Miss Emertons. She was like a whirlwind! I am so glad that I got to kiss on her chubba cheeks! Aiden won't let me at all anymore. He swats at me. So sad.
This is the Halloween gift box that we got from D/K&E. It was awesome:sixlets, kitkats, twix, reeces pb cups, stickers/stickerbook, fuzzy blanket and pillow with ghosts, smelly lotion and lip stuff (for me) sudoku, word puzzles, skeleton outfit and socks for Aiden! You guys are awesome! We love you thanks for all the goodies! While Aiden was asleep we got to go out to lunch at 5 Guys Burgers and Fries. We heard good things about it from Darren and Lisa and Dave's Boss too so we decided to try it out! Delicious- Be warned that the large fry will feed like 6 or 7 people (even though they tell you it feeds 3-4). Dave and Katie even took the girls to the kid's center here at PCMC on the third floor where they got to paint pumpkins too! We had a really fun day!
Here is our updated board - we have a special Halloween card from Dave and Katie and the Ghost plate made by Hailey! I am still missing some pictures from Grandma and Grandpa Goonan, Mike and Nichelle, and the Darren Anderson family! You can find the address to send them to us on one of the previous posts! We would really like to have those :) We love and appreciate you all! Take care and MAKE SURE YOU KEEP US POSTED AND UPDATED!





Day +4

So the girls were out of school for 3 days for fall break and they decided to come and stay with us. Brent and I took turns staying with the girls at the Ronald McDonald House on S. Temple. Our friend Mindy had an appt. for her son here at PCMC and so she brought the girls with her - Thanks Mindy!!
One of the great and wonderful resources for parents with children admitted to PCMC is the use of the Jewish Community Center. They have a gym, pool, classes, activities, day care etc. So the JCC is so great and offers a complimentary pass for the time you are in the hospital. We took advantage of that with the girls to go swimming. They even have a hot tub (although the girls were too young to go in). They offer spin and Zumba classes which I fully intend on taking advantage of.
Aiden is doing well and was excited to see his sisters. We have gotten into a little bit of a schedule where Aiden will nap in the afternoon around 12:30 and we have a couple of hours to run errands or go to lunch or do something out of the hospital. We love the Smith's Marketplace on 5th South and 5th East! It's "almost" as good as Walmart :) (I hope you hear the sarcasm here)

Thursday, October 14, 2010

Day +2, +3

Spin the chair is a great game! We are still doing great and feeling great most of the time! They are giving him benadryl and Adavan for nausea and it seems to help mostly. He isn't really feeling like eating a lot so they have upped his IV nutrition - but this is normal. On day +1 and +3 they gave him some mini doses of a chemo drug that helps kill the lingering immune cells in his body which helps decrease the chances of Graft Versus Host disease (GVH - where the body fights the new marrow and cells). It is one of the reasons that he doesn't feel so great but he is still pretty happy. His new favorite show is Alvin and the Chipmunks the Squeakel. They gave him a blood and platelet transfusion also which helped him have some more energy and feel a little better. So far so good! Keep up the prayers and faith - it is helping a lot! We love and appreciate you!

Day +1

Since we had 2 day 0's, Day +1 was on Hailey's actual birthday. The last post was pictures of her awesome birthday party (kudos and many thanks to Emily, Ashely and Jen - they are awesome!) We got her on her birth- day! More presents. Hailey loves presents (don't we all) and this year what she really wanted was money (no it was her 7th birthday not her 16th!) but she did get some other things as well.
Aiden's counts are at 0 still so the girls got to wear masks while they were in the room. Grandma Rutu and Grandpa Joe came down with the girls so they could sit with Aiden while we took Hailey out for her birthday. We went to Gateway so that she could spend some of her money on rings, sunglasses and build-a-bear. Kaitlin and Aiden also got a bear. We went to see Secretariat - which we all liked and ate at the food court that way everyone could choose what they want for lunch! So much fun!
Aiden had tons of fun with Grandma - frog on the head game is always a winner. Especially when you are naked. "See how great I look everyone!"
Aiden is doing great! He has had some nausea and gets crabby (who wouldn't) but otherwise we just watch TV and hang out!



Monday, October 11, 2010

HAILEY'S BIRTHDAY PARTY!!

On Saturday Hailey celebrated her 7th birthday with a costume/carnival-themed party. It was SO much fun!! Emily put in a lot of work putting together the games and the kids got to play penny drop, ring toss, ball toss, and duck pond. When they won a game they got tickets that they saved up until the end to buy prizes, just like at a fun park. Of course, there was face painting, too, because what's a carnival without that?? It was a great party. We love you Hailey!! Enjoy a few pictures from the day...(and yes, this is a FEW, there were 122 to start)
The face paint was definitely in demand!
The Ninja and The Hippie (Kaitlin and Bekah)
Mabel battling the ducks!
Hailey's face paint!
Ring Toss! Harder than it looks, trust me.
Emmy's tutu blocking the ball toss
Jen and Bekah...rockin the bright pink ;)
Even the stray random cat got involved! Those ducks never had a chance...
The games were excellent!
Tabitha
Crazy Faces...and Emmy is trying to get away...see? hahahaha
Penny Drop Game
Kaitlin's face paint
Samuel
The group
Movie tickets and treats, what's better than that!?
HAPPY BIRTHDAY TO YOU!!!
Hailey's piece of cake!
No, she didn't eat it all.
Oh how I love to take pictures of Emmy!!!
Hailey cashing in her tickets
Freaky...
The cutest face EVER! I had to put this picture on :)
Ashley was brave and let the girls paint her face!
The other very brave face painter, Andrea

avandia class action lawsuit