(Almost) Wordless Wednesday

With all of the packing going on around here, (Yes, our house sold!) the boys have been on their screens a lot lately. Our Passat needed a tune up, so after we dropped it off, we walked over to Jump Zone to burn off some energy. They had so much fun! And yes, Isaac is going through another "I have to dress myself and if you suggest anything different, everyone's day will be ruined" stage.  So never mind his mismatched outfit and different socks!
 

Texas Trip...Medical stuff!

We were at Texas Children's WAY more than I thought we would be while we were in Texas.  We had a full day on Monday...8-5.  Caleb was a trooper though.  It's a little sad that he is so used to being at the hospital.  He's so good and easily entertained most of the time.

Back at the old stomping ground...TCH BMT waiting room.  Playing the Wii 

 

Enjoying the view from the 21st floor while getting an EKG done

 

 

Showing off his little booty before his skeletal scan

 

Thank goodness for the Ipad!!

 

He only had one test on Tuesday, but they forgot to order the medication they needed to inject him with.  So a test that normally takes 4 hours, took nearly 7.  But, but it gave us time to go and find his favorite nurses that have taken jobs in other areas in the hospital.  He was SO excited to see them!

Miss Alex

 

Miss Sherryl

 

 

 

Miss Holly, his true love.  She actually works a different hospital now, but is still in the "Medical District", so it was only a short walk down the street to track her down!

 

Of course we had to stop a few times to run the trains

 

And Wednesday we went back to go over most of Caleb's results.  I don't have everything back yet, but most of his results were "excellent." One concern was that his IgG (antibody) level was low. TCH's "threshold" is much higher than our clinic here in WI. (So it was still in the normal range for our hospital here, but in Texas he would have needed another IVIG infusion.) There was much discussion about whether or not he could start his vaccinations. It was decided to give him one in hopes that it will kick start his antibody production. They warned me that his body probably isn't ready yet. Kind of a bummer, but if this is the only "issue" from all of his testing we should be singing praises. I was really hoping he would have some protection before starting school though. He will have blood drawn in one month to check if the vaccine he was given was successful. If not, we have to wait 3 more months and they will give it to him again. They also did not want to drop any of his medications yet.

The heart/lung doctor was extremely impressed with how well C is doing. His echocardiogram looked good and the doctor was very happy to hear that Caleb is doing well with the medication wean. He only has one more week left of one of his heart medications! His lung studies continue to show "obstruction," but it's not worse. This doctor also feels Caleb doesn't need to be on his steroid inhaler...I am hoping they agree in WI!

And the man behind it all, Dr Krance!!  Love this man!

 

We will be forever grateful for the great medical care and support we were given at Texas Children's Hospital!!

Texas Trip...FUN stuff!

We have obviously spent a lot of time in Texas the past year for medical stuff.  It was pretty much it, hospital to home, home to hospital and repeat.  This trip was going to be a little bit of hospital, but also a lot of fun things.  We ended up being at the hospital more than I thought we would, but I think the boys remember the fun things from the trip more than anything.

My mom offered to come with the boys and I for this trip.  (Couldn't have done it without her!)  This is the first time we have not flown on a direct flight and if I have any say, we will never fly on a non-direct again.  We didn't check our luggage, brought booster seats, back packs, and bags.  Another mistake!  My mom and I found ourselves carrying/lugging everything through miles of airport to get to our connecting flight, because Caleb was way too slow to keep up if he tried to help, and Isaac was too busy doing his gorilla walk.  And believe me, not making him carry anything so he could do his gorilla walk while my back was breaking was MUCH better than him pitching a fit in the middle of extremely crowded airports! They were both rock stars on the plane...still amazed how well they fly. Hoping that carries over to our long trip to Hawaii!!

 

Ben and Erin graciously let us stay in their guest house again.  The boys had fun playing with Jake and Ellie and loved swimming in their pool every day.  Caleb almost drowned a few times because he kept forgetting that after juming into deep water, you have to know how to swim.... Isaac got to go to the clean version of Chuck E. Cheese with them while C and I were at appointments.

We also got to celebrate sweet Baby Kate's second birthday.  It was so special to be with them that day.  Two little miracles reunited again.  We also met up with them at the zoo one morning, which was also fun.

 

 

 

 

I think the highlight of the trip for the boys was the Houston Aquarium.  It was super cool!  Most of my pictures didn't turn out, but here's a few.  Caleb's favorite part was touching the sting-rays.  He kept saying "My dreams came true!" HA!  And Isaac's favorite part was riding the train through the shark tunnel.

 

 

 

 

 

Tunnel full of sharks

 

 

And here is a picture of Caleb and his host-girlfriend sister, Ellie.  Both of them swear that they are going to get married some day!  HA!

 

 

 

 

 

 

Happy One Year of New Life!!

Today marks one year since Caleb had his bone marrow transplant.  One year since Isaac gave him the greatest gift one could ever give.  A chance at a new life....a NORMAL life.  It has been an extremely challenging year on many levels, but Caleb made it.  We all made it.

Thank you all for your love, support, and prayers this past year.  We couldn't have gotten through it without you!

To celebrate, we took the boys mini golfing for the first time.  They had a blast.  Caleb got a hole-in-one and was super mad when he wasn't able to do it again.  No matter how hard we (and the kid working there) tried to explain to him that a hole-in-one is not easy and not many people can do it, he wasn't buying it.  He wanted to get another one.  They were both upset when we were done (and we went around twice!)

 

 

 

 

 

Love these sweet boys so much!!

 

Here's a video I put together of pictures from the past year. http://www.youtube.com/watch?v=lygfxtXyBM4&feature=youtu.be

One Year of New Life Party

Caleb hates to have any attention put on him and he hates a change in his routine.  Both things make him extremely anxious, to the point where sometimes can't function because he's so worried about what is about to come.  I had talked to him several times about having a party to celebrate the milestone of being one year post transplant.  He wanted nothing to do with it.  He didn't want a party and he didn't want to invite ANYONE if we did. 

I decided that we HAD to celebrate.  So I took it upon myself to plan a party.  At first we were going to have a simple party at our house...not make it a big deal, just casually invite our friends and family over.  But with our house being on the market, the chance of rain, and me having to work the next day, I  decided at the last second that we should have it at a different location.  I called up The Big Backyard folks to see if we could hold his party there the following week.  (I used to take the boys there every week to burn off energy during the winter months, but we haven't been there in a while.)  And they said, yes!  But when I told Caleb about the change in plans, he had a fit.  He cried about it in his bed for over 20 minutes.  He did NOT want this party.  I really thought about changing it back to our house.

I am so glad we had it there.  We didn't put much focus on Caleb or Isaac, or the transplant at the party.  We got to spend a couple hours with our bestest friends and some family members, watching our miracles have a blast running around like crazy people.  Caleb's fears went out the window as soon as we were there and he thanked me for having his party at The Big Backyard after it was over. 

We felt really blessed as we left last night.  Sunday marks one year.  Wow.  God is so good.

I didn't take any pictures during the party because I didn't want to set Caleb off, but I did insist on a group picture at the end!

 

Buzz's Bunch

Caleb had his Buzz's Bunch basketball camp at Marquette University last weekend.  (Buzz's Bunch is a group of special/medical needs kids who get to be mentored by Marquette basketball players.  Caleb has been in this special group since he was 3 years old and has loved every minute of his time with these amazing guys.)

He wasn't able to attend the camp last year due to his bone marrow transplant.  You may remember seeing this post (click), or this one (click). The videos are hilarious!  He had fun back then, but really had no clue what he was doing.  (I should mention that 2 of the players he is pictured with back then, and two more recent buddies are now in the NBA! How cool is that?!)  This year it was actually a "camp" for him and he took the drills very seriously.  It was so good to see him work hard and show off his basketball skills!

Caleb LOVES hanging out with the basketball guys.  The players remember him and Caleb recognizes them on TV.  It's such a special group and I am so glad Caleb's pediatrician (a Marquette alum) signed him up for it!

 

 

 

 

 

 

 

And this little cutie didn't actually get to participate, but he was on the sidelines perfecting his dribbling skills and cheer on his big bro.  Such a sweetheart!

 

 

So happy he got to finally meet the Golden Eagle up close!

 

Isaac's smile in this one with Coach Buzz cracks me up!!