Updates from Kristy: Friday, August 5, 2011
Clinic Appointments today: At infusion they are checking Liam’s adrenal glands. Then we have to come back at 2:30 for a blood draw & then apt at 3:00. Exhaustion
Clinic Appointments yesterday:Liam is getting his BMA & skin biopsy. Please pray that Liam is free of HLH & Hunter’s cells took over & gave Liam a 2nd chance.
Post from Kristy: Thursday, August 4, 2011
I’m going 2 try & get some sleep. Have 2 b up at 3:30am to switch feeds over 2 pedia then up at 7:00am 2 turn feeds off. 1st apt 8:00am.
Yesterday’s Clinic Updates: Ok not the best dr visit Liam’s potassium is a little low and his liver is a little elevated. So now we wait 4 fri. When they check again 🙁
Update from Kristy – Wednesday, August 3, 2011
I checked on Liam at 12:15am he pulled his NG tube out & his feeds r all over him and his bed I will have 2 put NG back n when he wakes up 🙁
I put NG tube back in 🙂 I couldn’t fall asleep until 2am & Liam woke up at 3:45am so not much sleep 2 c his cute face makes it so worth it
Hope and faith is all we got. Don’t let anything blind you of the goodness that surrounds you. Let your heart be kind and your eyes open 🙂
Thursday, August 4, 2011 Liam has the Bone Marrow Biopsy testing, Please say a special prayer for Liam, Mommy & Daddy, Noa, Hunter and Ryder. This testing will help determine his progress, and when they can all be a family together again. DAY +100 should be the day of release to return to Home, if everything is going well with his counts. That day is August 20, the day before Hunter’s birthday. Hunter said, “that would be the best birthday every.”
Testing: On Day+80 testing, Liam will get his ferritin level, BMB, NK fuction and skin biopsy. I hope all turns out well. We will also get a overall percentage for his graft to show how much of Hunters cells have grafted.
Clinic appointment for Rash: On our way to the dr so they can check out his rash.
We just have 2 wait & watch the rash. Tomorrow is the big day 80 evaluation BMA, skin biopsy, & all the blood work. Keep Liam n your prayers
Update from Kristy – Tuesday, July 2, 2011
We have a dr apt today hoping for only good #’s. I feel the anxiety creeping up on me. This week will tell us what is to come for Liam.
Clinic Update: Ok not the best dr visit Liam’s potassium is a little low and his liver is a little elevated. So now we wait 4 fri. When they check again 🙁
Liam is doing great. He has doctors appointments tomorrow. I was able to Skype with them today. Liam was just smiles from ear to ear. I just can’t believe DAY +100 is 19 days away. Liam goes in on thursday the 4th to have the bone marrow biopsy, praying for good numbers.
Picture of the 3 older boys from this weekends reunion.
Update from Kristy – Monday, August 1, 2011
Ryder is at the dr he got shots last Mon. and has had fevers for 3 days I hope that he is ok I hate immunizations but really don’t have a choice. Dr thinks it is just from the shots. But if the fevers continue he needs to be seen again.
Update from Kristy – Sunday, July 31, 2011
So I woke up to Liam chocking on the NG tube it was just inside his nose. So I put the NG tube back in myself got return & sound=success 🙂
Update from Kristy – Saturday, July 30, 2011
Last night 4 hours sleep the night before 3 I think I am totally wiped out. The sun is finally shining & all I want to do is sleep. :(energy
Please pray for a beautiful girl Nevaeh she is post BMT and needs our prayers she is fighting for her life. She beat HLH 13 times.
The daughter of one of my high school friends wrote this song about and for Nevaeh. She is currently post BMT +40 and has been in a medically induced coma on life support for over a month now. Please continue your prayers for her. I love love love this song and yes, Sammy, I soooo want Nevaeh to meet you someday soon and she’s gonna love this song, too!
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Update from Kristy – Friday, July 29, 2011
Liams apt went good we will just have 2 wait & watch his mouth but Dr. Sanders thinks he is still doing great. Next week will b very busy
Missing my family they are having our yearly reunion it is so hard to be away from all of them 4 so long. Next year will b amazing luv u all
Update from Kristy – Thursday, July 28, 2011
On our way to Liam’s oral appointment hoping for only good news. The weather is beautiful here in Seattle. Hope it’s sunny wherever u r 🙂
Ok not sure what to think of Liam’s oral apt. He said Liam’s cheeks are whiter than normal could b signs of GVHD in mouth. 🙁
I am so excited we love our new neighbors we meet them in the hospital when Liam got his BMT There little guy Frankie is now post BMT & 🙂
Continue prayers for Mia and her family please. She is an amazing beautiful little 4 year old that needs our support and prayers God is good
Update from Kristy – Thursday, July 27, 2011
Day+76 Liam has seven teeth now 3 on the bottom and 4 on the top. 🙂
