Another Good Day!

Grandma had to much fun dressing up Sarina to cheer on the twins!  We sure miss our little girl!  Thank you Mom for taking such good care of her!

More good news!  This morning, labs were drawn to check Coleton's factor levels again.  The results were that the factor level was at 63%.  Typically the half life of the factor (after 12-18 hours) will be half.  These labs were drawn almost 24 hours after the original labs, which measured the factor at 136%.  Coleton's doctor said that she is very very happy with these results, and she was not expecting them to be so good.  He was given his second dose of factor this morning, shortly after labs were drawn, and that went very well.  His factor level since that has gone up to over 200%!  Other than being a little crankier than usual at times (likely due to the meds.), he is doing very well.

Coleton was delighted to receive a gift delivery from the church family today!  He loves his puppy and balloon!  It came at the perfect time, when he was getting restless to get out of bed and be free from the port needle and all the tubes running into it.  This kept him entertained for that last half hour before they were able to de-access him.  He is now free from needles and tubes, playing with Daddy in the playroom, without having to be followed around by Mom with his i.v. pole.  Needless to say, he is thrilled about this.

Tomorrow and Sunday, we will go through the same routine as these last 2 days.  Please continue to pray that the inhibitor would be gone.  Often the inhibitor would show up 3-5 days after exposure to the factor.  Tomorrow will be the third day, so please continue to pray!  Thank you so much!  Things are going very well, and we are praising the Lord for His goodness to us and for you and your prayers for us!

Love in Christ,

Chase and Sarah

This is Coleton's least favorite part!

He is quite the trooper.

Coleton's doctor giving the first dose of factor.

Thank you all so much for your prayers for Coleton!  He is doing very well.  He received his first dose of factor around 10:30 am, and he has had no allergic reactions.  The only side effect from all the other meds. was an initial response of drowsiness to the Benadryl, which was minor and to be expected.  His body did respond to the factor, in that his factor level went up to 136% (normal levels are between 47-104%, and his was below 1% before receiving factor), so that is very good.  They will continue to monitor that, as well as every other body function, it seems.  It has been a full day.  Watching Coleton get that first dose of factor, and seeing that he showed no signs of allergic reaction was a definite high point!  He did end up jostling the needle out of his port, as he was playing, causing that needle to have to come out.  Additional lab work was needed, so he ended up needing to get an i.v. this evening, and that took a couple tries, which of course he didn’t like.  Right now he is needle-free, and he enjoyed his freedom by running around in the play area for a while.  It was great to see him, acting as we always see him, happy and full of energy.  Tomorrow morning his port will be accessed again (around 9:00 am), and he will receive his second dose of factor.  Please continue to pray that his body will not respond with an allergic reaction and that the inhibitor will not return.  We are so blessed to know that our prayer warriors are doing battle on our behalf!  Praise the Lord for what he has done this day, and for the plans He has for tomorrow!

With Love and Gratefulness,

Chase and Sarah

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!