March 14-25 Has it Been that Long?

Stacy  here, I apologize that it has taken so long to update.  Jason came home, and the week he was here always goes way to fast.  He is in Oregon this week and I finally have a short period in the afternoon that I could quickly update the blog.

We will start with one child and then go through the others.

Sierra is doing well.  She had a clinic this week before her biopsy in a couple weeks.  Just follow up from the 1B biopsy.  They haven't changed anything with her medication regimen and her echo looked good.  They did a few blood tests to see if they can find a reason for her hair to be falling out.  We haven't heard anything yet, but they are taking it seriously and working on finding the cause.  Just to note, she is not going bald by any stretch, her hair is just half as thick as it used to be.  Thank heavens, it was really thick to begin with.  She is doing well and trying hard at school.  We even received an email from her Spanish teacher commenting on how hard Sierra is trying and how impressed she is. I am very proud of her, Paly High school requires a lot and she is stepping up to the plate.

Megan finished basketball and is now onto softball.  She hasn't played softball before and last played baseball when she was 11.  It is as if she is playing for the first time.  Her true love is basketball and volleyball.  This is evident watching her in softball.  She is fine sitting on the bench.  She mostly is playing because it gets her out of her PE class, so she can go to her friends house and sit in the hot tub while working on homework during that hour (go figure).  I'm not sure if that is worth all the practices and games in the evening during the week.  However, she says she is not a quitter and will finish the season.  So, we will make every attempt to make it to her games and support as best we can.  She also started AAU basketball this week and is very excited for that.

Lindsey is doing better in school as well.  She has found a few friends that she really likes to be around.  She has complained of stomach pains frequently (almost daily).  We've thought maybe bladder infection, constipation, or stress.  However, we ruled out bladder infection.  Stool softner seems to be helping a little, but she is still having the pains.  This is not related to her heart, I think it is something else.  We met with the general pediatrician last week and Lindsey is keeping a journal so we can see if there is a pattern (something she ate, time of day, length of time they are lasting, etc.)  Nothing seems to be making any sense yet, but we will keep working at it.  She started basketball this week and is very excited for that.  She will also start a dance class after spring break that she is really looking forward to.  It is good for her to be involved in something.  She was really feeling left out.

Hunter is enjoying baseball, his team tied their last game and he was thrilled.  However, when we took Lindsey to her basketball the other night, the coach asked Hunter if he wanted to come play boys AAU on Wednesday nights.  Hunter's eyes lit up and he was ready to throw baseball out the window.  I told him his first commitment was to baseball and then he could do AAU basketball.  He missed this weeks practice, but he is ready for next week.  His basketball bag is packed.

Gage had a rough week last week. Thursday night, he threw up his feeding tube around 1 in the morning.  He has been doing so great, he had clinic on Friday and was acting great. By that evening, he was acting very tired and threw up his feeding tube that evening.  He was gagging on his meds and was petrified to take them for the fear that they would cause him to throw up .  This pattern continued through the weekend.  He was just acting really off, not himself.  Jason was leaving on Sunday to head back to Oregon and I was worried they would admit Gage when he was gone.  He had a impromptu clinic on Tuesday.  They did not feel the need to admit him as he was able to keep enough fluid down to stay hydrated "enough."  I was so relieved as I was trying to figure out how to be here without Jason and running 3 kids in different directions.  That was hard enough without him being in the hospital.  Gage ended up going through 3 feeding tubes over the last week.  Never fun, that was 3 times I had to put them back in and I hate doing that.  Today has been his best day yet, he is definitely on the mend.  He has been able to take his meds with out vomiting the last 2 days.  Very relieved that Jason will be back tomorrow.

On a lighter note, we had the privilege of having my dad and stepmom visit.  We love them and enjoyed their visit so much.  They have never been here and it was fun to show them our home away from home.  My dad has quite the sense of humor.  Sierra was doing her biology homework when they arrived. She was studying genetics and genomes.
 My dad asked, "Did you know diarrhea is genetic?"
 Sierra looked over at me, and I replied, "No, I think it is, I heard something about that."
Then my dad said, "It runs in your jeans."
Sierra swallowed that one hook, line and sinker.  Pretty funny.
Saturday, while they were here, we were able to attend a conference for children with internal defibrillators.  This was quite an amazing conference.  It was for patients and families, including siblings.  They gave each child (patient and siblings) really nice backpacks, fitbits and really nice water bottles.  They had activities geared for kids and great speakers for the adults.  Gage was sad that this would be his first and last conference as he would not have a defibrillator after transplant. I tried to explain that was a good thing.  I will post some pictures of the event when I get them.  The kids had a ball.  Megan had a softball tournament and Hunter a baseball game, but they were able to come to some of it.

Looking forward to tax season being over in a little over 3 weeks!! I can hear the panic that just gave Jason as he read that!

Hunter had a cubscout carnival.  His game was bouncing pinpong balls into a cup.  It was really fun.

More carnival pictures.

Gage at the defibrillator conference.  Notice, no feeding tube.  He had thrown it up that morning. He was getting his picture drawn, 

Sierra's picture

The hospital had a carnival, Gage went and found some popcorn.

Hunter playing 2nd base.  It is nice having a baseball season that is warm.