4-16-2014 12th Infusion, Soccer Season & other updates

Sarah had her 12th infusion tonight, and it went really well.  I feel like we finally have all of the pieces of this dialed in. This infusion took about an hour and a half, and the swelling was relatively minimal.  She did not even have any bleeding afterwards when I took the needles out.  She is feeling really good so far.

During the infusion

 

 

Immediately afterwards

Sarah has played three of her eight soccer games so far this season.  She has still been feeling a bit icky ~ runny nose and cough, but no fever and nothing too major in the big scheme of things for her.  In the first two games, she played goalie for half of each game.  It was so fun to watch her because you can tell she has really been working with Zach.  Even in 2nd grade, she is really aggressive in goal.  She likes playing on the field as well, and had several runs down the field last night, and a few shots on the goal.  Here are some pictures from those games.

This is on the field

In goal and one of my favorites...you can see how fearless she is

More in goal

After the first game

And, this month is National Primary Immunodeficiency Month.   Often in med school, doctors are told "when you hear hoofbeats, think horses and not zebras." Well, in patients with PI, you have to think zebra. They cannot be treated in the same way as everyone else, and some things that are no big deal for most people, are a huge deal for zebras. They are unique and rare. They are often fighting a fight you can't see from the outside. You may think "they look fine. They don't look sick." That is because this is their "normal." 3 of my kiddos are zebras, so when I hear hoofbeats, I tend to think "zebra"...even here in Kansas. (By the way, we got a new set of bloodwork done on both Zach and Anna and are awaiting results to see if their extra pneumovax shots have helped them any.  We should have that next week.)

Sarah's Special Goodies

There are so many amazing people who really want to do nice things for kiddos who have health issues.  Sarah has been blessed over the past few weeks with several packages.  I cannot find the pictures I took of her with her bracelets and stickers, but she got some neat handmade bracelets and some nice cards.

The week of her birthday, she received a lapdesk from Bee Brave.  The pillow part attaches to the board with Velcro, and it has a zipper pouch that can fit crayons, coloring books, or whatever.  It is also personalized to her.  She also got goodies in the pouch.

She also received a personalized jar from Jars of Hope.  How this man fits everything he does in the jar is beyond me.  Sarah was so excited to get her necklaces and bracelets, dolls, bubbles, and all kinds of stuff.  These things are really helping boost her spirits.

Also, Sarah's visual therapy is going well.  One of her current activities is to learn all of the presidents forward and backward.  They have a picture that she has to "see" in her head for each one.  She knows the first 21 forward and backward so far.   I have a video, but will have to upload it to youtube later and then share it. 

For choir at church, Sarah had to learn several hymns over the year.  This past Sunday was the deadline and she was working on the last 4 (yes we were behind), and I got a few videos from those that I will post this week too.  She has an amazing voice.

Lots of good things happening here...

4-3-14 Sarah's 11th infusion

We have been working hard since November to get everything dialed in with Sarah's infusions.  We have tried different doses, different types of needles, moving her sites around a bit on her stomach, finding the right pre-medications so she has the least amount of side effects possible, etc.

Sarah has had a few weeks that she has been well, which is actually really good.  She has started with a bit of a runny nose and slight cough the past couple of days, but I am praying she will get over it on her own and without too much fanfare.  It is amazing...since starting the subQ IG Therapy, she has only missed ONE day of school.  Since November.  That is absolutely incredible!

We put her infusion off one day this week.  On Wednesday, she spent several hours with her best friend from school and wanted to do the infusion Thursday.  We have a 3 day window one way or the other to do it, so that was fine.  Wednesdays just generally work best for us as there is no soccer or anything that night.  I was more concerned about moving it to Thursday this week because she has her first soccer game on Saturday, and usually she is quite sore for a few days after the infusion.

This infusion went really, really fast!  It only took an hour and 20 minutes.  That was 20 minutes faster than the time before, which was 20 minutes faster than it had been.  When we turn the pump on, it is painful to Sarah when the medicine first starts infusing.  After just a few seconds, it doesn't bother her anymore.

This was immediately after the infusion

These were about 30 minutes later

 

And this was this morning...about 12 hours later.

As you can see, the swelling really went down quickly this time.  She still has some, but not too bad.  She isn't sore at all, and even was jumping up and down today saying "look, I can jump!  And I can touch my stomach and it doesn't hurt!"  She was so excited that it was so good this time.  We definitely know there are people praying for her through this process as we continue to see improvement.  So thank you all!

Sarah's next infusion will be Wednesday, April 16.

Special Things for Sarah

Saturday, March 22, Sarah was the honoree at the Sporting KC (our Major League Soccer Team) Game.  They have the Victory Project, which is designed to help children who are facing health challenges.  It was an amazing experience for her (and for Zach who LOVES soccer).  Friday, the 21, we were able to go watch Sporting KC practice.  After practice, the kids got to meet players and coaches.   They were all so genuinely nice.  Sarah had them sign her jean jacket, which she now wears almost every day.  Zach had them sign his Sporting KC hat that his Aunt and Uncle got him for his birthday.

Saturday, we got to have a tour of the stadium, watch the game from the Victory Suite, Sarah was introduced to the crowd, she got to watch the end of the game from the field, and she got to greet the players after the game and they signed a ball for her.  It was such a boost to her spirits.  I cannot say enough about what an incredible organization this is.  After the game, the players literally stood in line to sign her ball.

Sarah got to pick out a new Sporting Shirt while she was there, and of course it had sparkles.

 

She got her pass with her name on it and everything

 

 

We had our picture taken on the field before the game

 

 

 

And in front of the seats that the players sit in during the game





Before the game, she was introduced to the crowd

At halftime, two of the players (who were injured at the time) came to talk in the suite we were in.  We were each given a special scarf

 

 



 

 

And here is the video they showed at the game



 

She has also been blessed to receive bracelets, stickers, tattoos, and other items from people who make it their mission to help kiddos be encouraged in spite of what they are going through.  She just received a box today from Bee Brave, which will be a lap desk decorated for her so she has some place to draw and whatnot while she is having her infusions.  And, she will also be receiving a "Jar" of goodies this week too.  I will post pictures of all of this when she opens them.  She has also been paired with a lady who is dedicating her runs and workouts to Sarah.  Such a cool idea.  Even though Sarah is able to run herself, there are many days that due to illness, she is not able to run.  All of these things have really helped in boosting Sarah's spirits.