Liam's HLH Journey | HLH – Hemophagocytic Lymphohistiocytosis, is a rare disorder of the immune system

DAY +116 Skin Rash

Posted on September 5, 2011 by Nana

Liam woke up this morning with a rash on his forehead and on his back. Kristy called the clinic they had her check his temp. He didn’t have a temperature, we were very relieved. He doesn’t go to clinic until tomorrow. So we wait…

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My Tiny Hands sign: Please Wash

Posted on September 5, 2011 by Nana

I was talking with an HLH/Survivor Mom today, she shared this info with me. I wanted to share this with others as well. GREAT IDEA.

My Tiny Hands – Shopping/Product Information
mytinyhands.com
Our “Please Wash” signs can hang from almost any stroller, car seat or baby carrier with the attachment ring. The bright color, stop sign shape, and large text make it almost impossible for anyone to miss, and looks great!

Signs are 3.5″ X 3.5″ in size, washable, weather proof, and made of a durable silicone rubber material. Signs are now available in blue, pink, and red, and comes with an attachment ring. (Red and blue signs come with a white ring, and pink signs come with a black ring) Spanish signs are now available in red only. Order yours now!

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“Liam’s Journey” Costume Run – October 30, 2011

Posted on September 2, 2011 by Nana

Click on Link below to download PDF Registration Form:

Liam’sRunRegistrationForm

Click on Form To Enlarge

Posted in Fundraising for Liam, Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis | Tagged Hemophagocytic Lymphohistiocytosis, Histio Awareness - HLH | Comments Off

DAY +110 – Tacro level at 10

Posted on August 30, 2011 by Nana

Kristy’s Facebook Post – August 30, 2011

Clinic appointment today, Liam is 17lbs 15oz. Waiting for labs. His tacro level was 10 last time it needs to be between 5 and 8 so hoping we get this figured out.

Posted in Doctors Appointments, Liam's BMT updates | 1 Comment

DAY +106

Posted on August 26, 2011 by Nana

Kristina Smith-8/26/11 Liam’s appointment went good. His numbers still look great CMV came back negative twice now so that is encouraging. He may of fought it off himself or it could of been the test was wrong. Either way good news. He is loving being with his big brothers and is standing on his own now. Still into everything but more entertained by brothers. Noa got a stomach bug so he is now at my mom and dads house. I’m hoping that no one else gets it.

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DAY +104

Posted on August 24, 2011 by Nana

Kristy got a call yesterday from the Portland Clinic. They said the CMV test came back negative, that was a huge relief. But his Tacrolimus level was up. They have a clinic appointment on Thursday.

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DAY +103

Posted on August 23, 2011 by Nana

Thing have been so busy, I haven’t had a chance to update Liam’s blog. I will be filling in the gap when I get a moment. Plus I will be adding some homecoming photos. It is so great having Liam home. He is such a happy baby. with a beautiful smile. He is trying to cut another tooth. He is so close to trying to walk. Last couple of days he is standing for a longer peroid of time. You can tell he is really thinking about it. Yesterday he said DaDa for the first time at his clinic appointment. Daddy was very excited about that. Now he says mom, nana and dada. Still waiting for the CMV test to come back. Kristy got a call on Saturday from the Portland Clinic. They said the lab on Thursday from the Seattle Clinic for the CMV needed to done again. The test was done on Saturday in Portland, but we still don’t have the results back. Will post update on test when we have them.

Grandma Terri posted in Liam’s Journey – HLH Warrior (Facebook Group)

9:55am Aug 23, 2011

Liam got home last Thursday and he is so enjoying his brothers, and they him! They have had to be in Portland at clinic on Friday, Saturday, Monday and again on this thursday! lots of traveling! Hunter had a wonderful 9th birthday celebration. Thanks to everyone for the support, meals, and honks and thumbs up at our sign to welcome him home! And to Burgerville for putting Welcome home Liam on their reader board! Warms our hearts, such wonderful friends, family and community we are blessed with!

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DAY +100

Posted on August 20, 2011 by Nana

Kristy’s Twitter Update – August 20, 2011 @ 6:30pm

Coming home was full of emotions and lots of excitement. I fill so truly blessed and so thankful God let me bring my baby boy home.

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Day 100-!!!

Posted on August 20, 2011 by Nana

Grandma Terri posted in Liam’s Journey – HLH Warrior – 9:22am Aug 20

Today is Liam’s 100th day post bone marrow transplant and we want to celebrate his journey, give thanks to God for how far he has come, and how amazing he is! He is the happiest little warrior, and I ask that everyone please continue to keep him in your prayers for complete healing! So thankful he is home with all his brothers, and tomorrow he can help Hunter, ( his donor)celebrate his 9th birthday!! They will always have this special time to celebrate together! He is our miracle!

Posted in Liam's BMT updates | 2 Comments