A Long Overdue Update

Wow! Has it already been two months since we blogged?! Well, here are a few updates from the past two months...

Chase got a "monster buck", a big 10-pointer, when he went hunting up north with his dad, brothers, uncle, cousins, and friends for their annual hunting trip. It's his biggest buck yet, and he was really excited about it! He also got a 5-pointer. Most of all, he enjoyed the camaraderie with family and friends.

While he was gone, I (Sarah), Coleton and Sarina enjoyed spending time with my family at their house.

In November, we had the opportunity to take care of Chase's sister's kids for the weekend. Clayton and Connor are two and a half and 16 months old, so we experienced having 4 kids under the age of 3. It was wild, but fun. We were grateful to also have Chase's sister, Lydia (now 9 years old), spend the weekend. She was a huge help!

Clayton and Coleton love their Auntie Lydia!

Coleton turned 3 on November 23rd! We enjoyed a small celebration at home as a family, and look forward to celebrating with grandparents, aunts, uncles and cousins after the holidays.

Chase helped Coleton put the star on our tree as we decorated the house for Christmas. Coleton really enjoyed helping us this year, bringing me branches to set up the tree, putting ornaments on the tree, and of course drinking holly nog - a family tradition for Christmas decorating.

Coleton's treatment continues to go very well, and we'll try to keep this blog updated as he progresses through it. We are still so very grateful for all your prayers! God bless you and Merry Christmas!

A Day to Celebrate

We met with the doctor today to discuss Coleton’s progress and plans for the next step.  She is very excited about what is happening, but feels we should stay the course for now with giving factor daily and keeping up with the current immune suppressants.  We will be cutting back on the amount of factor, which is good for a couple reasons: It means the factor is working well, and it will help keep costs down.  So, we are praising the Lord for where we’re at, and we had the opportunity to celebrate with Coleton this afternoon.  He will tell you that we got to have doughnuts.  By the way, we highly recommend “A Baker’s Wife” in Minneapolis (near Lake Nokomis), where we enjoyed cake doughnuts.  It looked like they had some other amazing treats there as well!  Thank you all for your prayers!!!

Awaiting the Next Step

We want to thank you all for your prayers for Coleton and our family!  Things are going great! On Friday, we went into the clinic and, for the first time, Coleton was taken off the two meds. that were to help in case of an allergic reaction, and everything has gone well with that.  He is still on two immune suppressants (one that is given daily orally, another that is given by i.v. over the course of 6 hours in one day out of the month).  Our next appointment is on Thursday, where we hope to discuss the next step with Coleton's doctor.  From the sound of things, everyone on the hematology team is very excited and surprised by the progress Coleton is making, and did not foresee things going this well.  We are also very excited, but not surprised, knowing that we serve an all-powerful, living God who can move mountains and part seas.  We know that if it's God's will to take away the inhibitor, He can do it with the snap of His fingers (actually, He doesn't need to DO anything, but you know what I mean).  We continue to give Coleton factor daily at home, and Coleton is being a trooper for his daily pokes, which he does not look forward to.  But, is has been a blessing to see him bruise-free for once in his life!  Even though Mom and Dad have had to put a lot of their energies towards Coleton, Sarina doesn't allow us to forget about her.  I guess she is a typical second-born (I can tease her about that, since I am one myself.).  She's an on-the-move kind of girl.  Unlike Coleton, who at her age could sit for almost an hour and play with cars; Sarina doesn't like to sit still for very long (unless there's food in front of her) but would prefer to explore the entire house all day long, not stopping to smell the flowers.  It has been so nice to be home more now, and able to spend time with her, though we are so grateful for family who have taken great care of her while we've been away at the hospital or clinic appointments.  Love to all!

Yeah for Daddy!

Today, Chase accessed Coleton's port for the first time.  I (Sarah) have been doing it every time so that I could get a lot of experience under my belt.  Chase did everything today, from mixing the factor through the entire process, while I just watched.  He did a great job, getting it right in on the first try.  I usually miss the first time and have to maneuver the needle a little to get it in the center of the port.  He told Coleton that it was just like bow hunting: aim the arrow for the bullseye.  Yes, hunting is on his mind these days... actually, I think it's on his mind year round. Each time we've been accessing at home these last 3 days, Chase and I have both been here; but we've been practicing at making it a one-person job, because there will probably be many times when Chase will be leaving for work before Coleton gets up, and we want to be ready for that, and also for other circumstances when only one of us is around.  It's pretty amazing that Coleton, not yet 3 years old, will sit still enough by himself for us to access him.  He has been crying a little (especially since we stopped using Emla cream - a topical numbing agent - since his skin was reacting to it), and he tends to want to put his hands up (in essence, to pull our hands away from putting the needle in), but he does obey when we tell him he needs to put his hands down and be very still.  I think at this point he knows what he needs to do, he just fights the urge to stop us for the few seconds it takes to get the needle in.  If he didn't obey us, it would be impossible to do this without two of us.  It just reminds me how important it is for me to take time to train my kids in obedience at a young age.  Yes, I'm motivating myself as I write.  Look out, kids; Mommy's been inspired!

God Is Good!

Coleton's treatment is going very well.  Today we started home treatment as being more the norm.  We won't have to go into the clinic until Friday, and probably only once a week from now until ???  There's still no sign of an inhibitor, and we're starting to cut back a little on some of the meds.  Coleton's doctor is very excited about how things are going.  We praise the Lord for what He is doing, and for His more than sufficient grace that has gotten us through thus far.  We are so thankful for your prayers and overwhelming support!

Coleton enjoys one of Mr. Delaney's famous ribs.  Thank you to all those who have blessed us with meals!  We have had so many delicious suppers, and I've hardly had to cook at all these days.

Coleton and Sarina love to play with Daddy when he gets home from work!

When Chase got back from scouting, Coleton had to try on Daddy's cool boots.

Treating at Home Today!

We were able to treat Coleton at home today with a home healthcare nurse.  Coleton was very excited to see "Rose" (she has come over a few times before, when we were learning to access Coleton's port for treating with factor 7).  He was Mr. Silly-Man while she was here, and when it came time to put the needle in, he was very tough.  He didn't even cry or fuss, just winced.  That is the second day in a row that he hasn't cried for "the poke", and we are so proud of him!  Tomorrow and Monday we'll do treatment and testing at the clinic.  This weekend we'll be able to treat him at home.  We don't have any plans past Monday, but are hoping that home treatment will become more of the norm.  Things are going great!  God is so good!

A Good Day at the Clinic

Chase blessed Coleton and me this morning by telling us he was taking the morning off of work to go to the clinic with us.  Coleton was so excited, and it was good timing for me after what happened yesterday.

Coleton is ready to go, with his new puppy, "Dinger" and fun stuff in his backpack.

Coleton thinks taking medicine is pretty much the same as getting a treat.  Here he is with Daddy and Sue.

The morning at the clinic went great, with no headaches or any other evident side effects.  Coleton's factor levels continue to be good, indicating no inhibitor - more praise to the Lord!

He's Quite the Trooper

Mommy, Coleton ("Mr. Happy") and Auntie Jennie head off to a day at the Clinic.  Though he knows he'll have to get poked, and earlier in the morning had a little cry over that realization, he's recovered and actually seems happy to go for a visit to the doctor and to see his favorite nurse, Sue, who is usually the one to "poke" him at the clinic.  We arrived home from the hospital yesterday afternoon, and were all very happy to be home and reunited with Sarina! Coleton has been doing great since we've been home, and has especially enjoyed playing with his sister and running around free from i.v. lines.  This morning we headed into the Clinic, and everything was going well until we were just about there and Coleton started crying.  Just as we parked, he started throwing up.  This was very concerning for me (Sarah), but Jennie was a huge help and did most of the cleaning up as I changed his outfit.  After a little while, he seemed back to his cheerful disposition, playing with all the fun toys in the Clinic.  We went through all the pre-meds, and he received his factor; then we settled in for a "boring" hour of hanging out at the Clinic, while observing him to make sure he didn't have a reaction.  About half an hour into our wait, Coleton started crying...then screaming, holding his head, and squirming as though he wanted to crawl out of his skin - something he's definitely never done before.  It was a very scary time.  They were able to get him some morphine right away to calm him down, and that helped a lot.  The doctors aren't sure exactly what it's from, but they think it may be due to withdrawal from one of the medications they had taken him off of because he was doing so well. Now, they will try to wean him off of this medication slowly to prevent withdrawal symptoms. They don't believe it has to do with the factor or inhibitor, and all other observations did not suggest an allergic reaction. We got home late this afternoon, Coleton took a long afternoon nap, and is doing much better - seems back to his normal self.  Thanks to everyone for their continued prayer and support!  Thanks to Jennie for putting up with a very stressful day and emotional mom!  Thanks to Mom for taking care of Sarina!  Thanks to everyone for taking such good care of us in the hospital, with goodies and gifts, and especially with your prayers and love!  Coleton's factor levels continue to be high, a sign that the inhibitor has not shown up - Praise the Lord!!!

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!

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.

Growing So Fast!

Sarina loves pulling herself up now. Naptimes can be challenging, because she keeps pulling herself up in her crib and "talking" to Coleton, who is across the room in his bed, and then they get to laughing at each other. Though I know they should be sleeping, I just love to hear them in there. Here is a rare shot these days of Coleton smiling at the camera. He loves to smile, just not when I have the camera out. I "tricked" him into this shot. He was hiding from me (rather, my camera) in the closet. I had the camera focussed and ready for when he decided to show me where he was hiding.

Even more elusive, though, is my husband. We have no pictures of him on this blog (well, one side-angle shot). Sure looks like we're child-centered. My next goal is to get some pictures of Mr. Good-Lookin' up on this blog. If you think the kids are cute, wait until you see...

We are so grateful for all of you who have been praying for Coleton's healing and continued health. He has been doing great. He's had no need for factor since his surgery. The only issues since then have been bumps and bruises, which are just a part of daily life, and they don't bother him much.

I have a new favorite recipe to share with you! We have been trying to eat healthier, but finding healthy food that tastes good can be challenging. We weren't sure about this recipe, but since we first tried it, we have been having it for breakfast about every other morning.

Green Smoothies:

Blend in blender: 1/2 c. kefir, 1/2 c. coconut milk, 1/2 c. water, 2-3 T. orange juice concentrate, about 3 c. fresh spinach.

Add to blender and blend: 1 banana plus about 2 c. fresh or frozen fruit (strawberries, peaches, blueberries, pineapple, apple, etc.)

You can alter this recipe however you want, but the main thing is to get that spinach in there - a great way to eat your greens without realizing it! Enjoy!

There's No Place Like Home

Coleton was a trooper during the 4 hours we were at the hospital before surgery. With a pre-surgery diet, consisting mostly of jello, he was in an especially happy and energetic mood. He loved playing with all the toys at Children's. I think, for the most part, he was having the time of his life.
Just after surgery, Coleton was not a happy camper. His throat was soar from the tube he'd had down his throat due to being under general anesthesia, and he just seemed very uncomfortable. It made for some special cuddle time.

By day 2, Coleton was unhooked from i.v. fluids and we were in the playroom more than his hospital room. Here, he just finished making "coffee" for Daddy at the play kitchen.


Just before I got this clip, Coleton was really singing away with "I've got the joy, joy, joy, joy, down in my heart." With a plate full of french fries, I think Coleton has only good things to say about hospital food.

We got home yesterday afternoon, and Coleton is doing great. His port is accessed with a line so we can give him factor twice a day for about a week to keep the bleeding under control. Other than that, he is actively playing and back to normal. (Of course, "normal" takes on a whole different meaning in Coleton's case. ;)

Thanks For Your Prayers!

Coleton's surgery went very well and he is resting comfortably tonight. We will try to get some pictures up tomorrow but I wanted to give a quick update. Please continue to pray for the bleeding to stay under control.
Chase

Please Pray for Our Little Man

Tomorrow, we'll be taking Coleton into Children's Hospital for surgery to have a port-a-catheter put in. This port will make it possible for us to give Coleton factor at home, as well as to give it on a regular basis when needed. Coleton will be put under general anesthesia for the surgery. Please pray that the Lord would give the doctors wisdom and skillfulness of hands, that the surgery would go smoothly, and that Coleton's bleeding would stay under control. The surgery will be at 12:45pm, and Coleton will be in the hospital for a couple of days to monitor bleeding from the surgery. Thank you so much for your prayers!

Connor & Sarina

Cousins, Connor and Sarina, are exactly 1 week apart in age.

Connor is a sweety, laid back and perpetually smiling.

St. Patrick's Day

A drop of green food coloring turns Sarina's rice cereal into a St. Patrick's Day feast.

As you see in the background, Grandma had the pots and pans out for Coleton to make music along with the Irish music c.d. she had playing.

Mom made a delicious corn beef and cabbage casserole for dinner.  

Otherwise, everything was green - salad, grapes, tablecloth, napkins, and even the water!

More cookies with Grandma!

Coleton Enforcing OSHA Regulations

What I love about this clip:

- Coleton's adorable giggle,

- Coleton thinks Sarina is the coolest and funniest thing ever,

- Sarina is sporting her up-on-all-fours, almost-ready-to-crawl rock,

- Sarina's patience with Coleton and calm persistence to get the hat off.

Coleton Loves His Sister!

This is a very typical sight of Coleton interacting with Sarina.

It brings so much joy to our days!

Sarina Giggling

Having Fun with Grandpa and Grandma!

Sarina and Grandma
Grandma and Coleton play "Mr. Potato Head"

Grandpa and Coleton with matching hats

Sarina loves her silly Grandpa!

Playing in the Snow

Coleton looks at the cows from our backyard.

Much of the snow has melted over the last couple days

as we've had warmer weather in the 40s.

Chase helped Coleton build his first snowman.

Grandpa and Grandma's House

Coleton and Sarina got to stay overnight at Grandpa and Grandma's house, and then spent the entire next day there, while I (Sarah) taught piano lessons and ran errands.  They had a fun-filled time, including a popcorn party, planting grass, making cookies, playing "Guess Who" 2-year old style, and ending with a pizza party with all of us including "Uncle Paul".

Coleton shows off his muscles.

Grandma and Coleton are planting grass for Coleton to put his toy bugs in.  Unlike last year, when Coleton couldn't stand to get his hands dirty, Coleton loved playing in the dirt!

Sarina Joy loves the exer-saucer at Grandma and Grandpa's.

Coleton and Jennie are making popcorn for their "po-corn party".

Morning Bible reading with Grandpa.

What a fun day with Grandma!

Memories don't get much better than making cookies with Grandma!