Coleton's Doing Well!

"Please Pray for Me!"

As many of you know, last November Coleton developed an inhibitor to the replacement Factor 9 medication that we give him when he has a bleed, to stop the bleeding.  This means that his body sees the medication as foreign and builds antibodies against it.  Since then, we’ve been using a Factor 7 product, but it doesn’t work nearly as well, needs to be used more often, and is very expensive.  Coleton’s doctor, in consultation with other hematologists around the world, recommend a treatment for Coleton called ITT (Immune Tolerance Therapy), in which we will be trying to get his body to accept Factor 9 again by introducing it to him on a daily basis along with medications to suppress his immune system.  This treatment will take place over the course of 1-2 years.  Through much prayer, Sarah and I have decided to go ahead with the ITT.

Please pray for our family and Coleton as we begin this treatment on October 8th.  Here is a tentative schedule of what will be happening as we get started:

Thursday, Oct. 8th  - Coleton will be checked in at Children’s Hospital at 8:30 am, where he will be given the first dose of Factor 9 by his hematologist, along with meds. to suppress his immune system.  Please pray specifically that Coleton would not have an allergic reaction to the factor and that his body would not produce antibodies against the factor.  (Last November, he had a minor reaction to the factor.  We have no idea how he will respond this time.)

Oct. 8th through Sunday, Oct. 11th - Sarah will be staying with Coleton at Children’s Hospital through the weekend, while Coleton continues to receive daily factor and meds. via i.v.

Oct. 12th - 16th - Sarah and Coleton will be driving into Children’s Hematology Clinic daily to continue factor and meds. under close supervision of the doctors and nurses.  They will also be doing many tests to check his immune system and inhibitor levels.  Please continue to pray that his body would respond well to the Factor 9.

From then on, Sarah and I will be giving Coleton a dose of factor daily at home via his port, along with oral meds. to suppress the immune system.  We will take Coleton into the Clinic once a week to check inhibitor levels.  Also, two consecutive days each month, we will be taking Coleton into Clinic for all-day i.v. meds.  

Please pray for adjustment to the new schedule and endurance for our family.  There are possible side effects to the immune suppressants, including irritability and overall not feeling well.  Pray that Coleton will have minimal side effects to these drugs.  Please also pray that our medical insurance and the high cost of this treatment would all work out.  We are praying that this new therapy treatment will work to take away the inhibitor and allow Coleton to use the Factor 9 product on a regular basis.  We are also praying that God may have already taken the inhibitor away and that we wouldn’t have to continue with this treatment.  If God chooses not to remove the inhibitor, we want to thank Him for that also, and pray that we would bring glory to God no matter what He chooses.  We rejoice to see how God wants to use Coleton’s special design to bring glory to Himself.  Thank you so much for your love and prayers!

With Gratefulness,

Chase and Sarah

Raspberry Picking

Our friends, the Larsons, invited us to come over and pick raspberries from their garden.  My mom met us out there to pick berries, play with the kids, and take pictures.  Coleton loved it and he actually put most of the berries he picked in his basket, not in his mouth.

Grandma gave the kids a ride in the hammock.

As you can see, not all the berries stayed out of Coleton's mouth.  Mmmmm, they were so yummy!  We yielded 3 pounds of raspberries, enjoyed some fresh raspberry smoothies and froze the rest.  It was a super fun time with the kids!

94 and Still Groovin'

Sarah's dad's mom, Coleton & Sarina's great-grandma, is almost 94 years old.  

Paul knows how to make Grandma's day by playing 

some of those old-time favorites on his guitar.  

Here's grandma, during the family reunion in Wisconsin Dells, 

teaching Coleton "She'll be Comin' 'Round the Mountain".

Sarina's 1st Birthday

We had a princess them party for Sarina's first birthday.  It was so fun to decorate and prepare everything with pink and glitter.  Here, Sarina is about to dig into her teddy bear birthday cake, made with love by her great-aunt Brenda, an Elgard birthday tradition.

A "boys against girls" lawn game of kubb.  This is a swedish game we first played up at Fjelstads' cabin.  Chase studied the wooden pieces and made a set for his brothers for Christmas.

Lydia, with her princess crown from a previous girls' princess party, and Sarina with her crown, part of a present from Grandma and Auntie Jennie - an incredible garage sale find of princess dress-up clothes and accessories!

Coleton thinks he might be able to get into this princess stuff...

...but we made Coleton and Clayton "Princes in Training".  As you see here, Clayton, true to character, has his crown on backwards.  Yes, they are still in training, but we do rejoice to see those glimpses of a prince in them.

Mommy thinks this girl is too kissable!

Daddy loves his little princess.  

Sarina is checking out the toile on her princess hat.

Sarina and Tanner - Sarina loves her uncles!

Cousins

Chase's sister's (Briana's) kids, Clayton and Connor (on the left), were over for a playdate, while their dad and mom went on a date.  We worked it out to watch each other's kids once a month, giving each other a date night with our spouse.  Coleton and Clayton are 4 months apart and great buddies, though they like to get in a tussle now and then, but I'm told that's how boys show their love for each other.  Sarina and Connor are exactly 1 week apart.  Connor tackles Sarina, and Sarina immediately lays flat on her tummy, head down, as if to say "I submit", but I think she's really just figured out that's the fastest way for Connor to become disinterested in wrestling with her.  4 kids under the age of 3 make for a wild night, but it's fun.

May 23, 2009

Coleton and Sarina had a blast at Grandpa and Grandma's house, 

while Daddy took Mommy out for a day on the town for her birthday.