Monday, February 18, 2013

Clinic (last) Monday....I forgot to post!

Abby just informed me that I forgot to do a post after clinic last week and that I needed to get on that, so here goes..........

We did go to clinic last Monday.  Abby and I both felt like her blood counts were still going to be low and that they would have to do something about it, so we packed our bags for more than just one day (we always do this, but this time we were more serious about it.)  Abby's echo looked great...that is always a huge relief, but her labs came back with low blood counts, both white and red, again.  Because they had slightly increased from the previous lab draw, Dr. E told us that we weren't going to do anything to treat it, we were just going to keep our eye on it.  Abby will have another lab draw the beginning of March and we'll keep our fingers crossed that things have turned around.  Abby doesn't have to be on house arrest, she just needs to be extra careful.  Lots of sanitizer and hand washing.  I think we both almost fell off our chairs when Dr. E said that if things look good with the lab draw in March, we won't have to go back for clinic until April!!  Almost 2 months, that is our record for sure.  I think that the longest amount of time that Abby has gone between visits is 6 weeks.  We were out of clinic and back on the road to St. George by 10:00, it was awesome.

So, this past week Abby had the okay to go to school, the problem was that she didn't have the energy to go.  I think it was because she's anemic, but I don't really know.  She went a couple of days in the morning, but that was it.  The other problem was that they took Abby off of one of her blood pressure meds to see if it would help bring her white blood count up.  But, the day she went off of it and every day she wasn't taking it, her feet and legs would turn red and get swollen and really hot again.  They were hurting her so bad that she couldn't walk very well, and it was very uncomfortable.  When we were at clinic, Dr. E decided that we had to put her right back on that med, but it took 5 days of taking it to get the swelling to go down.  Weird, I know.  It's baffled all of the doctors.  It's just a weird problem that Abby has that has no known cause.  Luckily, the past couple of days has been better.  The plan for tomorrow is for Abby to finally go back to school!  Yahoo!!  That will make everybody happier.

One funny thing about school that happened a couple of weeks ago was that we met with her teachers and school counselor to officially write up Abby's 504 education plan.  We talked about some things that we could do to help Abby if she needs it, and the counselor asked about her being able to participate in PE.  I told them that Abby was completely able to go to PE classes, but I guess that the teachers are too nervous to have her in their class.  I guess it would be pretty scary since her heart did stop beating and she collapsed in PE and people just don't know what people with a heart transplant are capable of doing.  They also mentioned that the other kids were probably still pretty shaken up as well and it could scare them too.  Many of them were in the gym when Abby collapsed and they saw her on the floor getting CPR.  So, for now, unless we find a gutsy PE teacher, Abby is exempt from taking gym classes at school.  Abby said that she didn't care about that, but I have mixed feelings.  Since it's such a little thing, I'm just going to let it go.  It really doesn't matter as long as it doesn't make Abby feel different.

Other than that, things are good.  We had a sweet 3-day weekend full of lots of friends and family and fun.  I wish we could have a long weekend every week!  The weather in St. George is finally starting to  feel like spring.  I can't wait until it's hot down here, I love it!  Brock had another appointment with the surgeon that fixed his ankle and he said that things are looking good, he's even ahead of schedule. He's already started getting ready for football next year.  My book is written and edited and ready to be published, I'm just trying to figure out who to send it to and how to go about taking the next step. It will happen, it's just taking me some time.  We're all looking forward to spring break in March, and Hawaii the end of May. Things always look brighter when you have something to look forward to :)

Tuesday, February 5, 2013

Brock's birthday and bad news again!!!

Tomorrow, February 6th is Brock's 17th birthday.  17, wow I can't believe it.  For those of you that have never had the chance to meet Brock, I wish you could.  He's one of the greatest kids ever!  Everyone that knows Brock, loves him, he's so personable (except on the football field anyway!)  I love it during school when I get a text from Brock, because I just never know what it will be, but it usually makes me laugh.  Sometimes it's just a "funny" joke.   Usually, it starts with "Guess what?"  and then he won't tell me until I text back, "What?"  Or sometimes he just sends me pictures like this one:

How can I not laugh when I look at my phone during a break and see Honey Boo Boo's sorry mom looking at me?   Brock loves to tease his sisters and me, but he's really just a sincere, nice kid.  He knows how to work hard and be dedicated, he's played sports since he was 4 years old.  I can't even begin to write about how many all-star teams and championship teams he's been on.  He just loves to be on the field competing.  Another thing about Brock is that he's got a natural ability to lead, people always tend to follow Brock and they look up to him and watch for his example.  I'm proud to be Brock's mom, I know he can do whatever he wants to do in life....and he was so cute when he was a little kid that I just have to add some pictures.


This was Brock's first year playing football, he's 8-years-old.

Happy Birthday Brock!  For his birthday he wanted his own football helmet with a sweet face mask, and his own personalized cleats.  He's going to be so ready for football next year, he already can't wait.  His ankle is healing perfectly.  Physical therapy is really helping, in fact, he feels like he's ready to run on it again, but that's not allowed for a couple of months still.  Luckily, he can be doing lots of other things to stay fit and get stronger.   He should be 100% by the first football camp of the season!

Britt's tonsils have almost completely healed too.  She hasn't had a sore throat for almost 6 weeks, which is probably a record!  I have to laugh at Britt because she's such a good student, she works hard and always does well; But, for the past few weeks she's been constantly complaining about how horribly hard her chemistry class is this semester and how she just doesn't get it, and that it's too hard, and that she needs a tutor, etc. etc.  Then she takes her first test and gets a 91% on it!  Whatever Britt, I know you'll always do well.  I can 't wait until she's in nursing school, she's going to love it.  

Abby survived her Neupogen injections.  It was 5 rough days, they just make her so achy.  It was hard for her to be on house arrest and not go anywhere for that long!  But, last Wednesday we got the word from the transplant team that they did their job and her blood counts were almost right where they needed to be......until yesterday anyway.  Abby had labs drawn again yesterday to see if they were maintaining, and unfortunately, her blood count was right back where it was at clinic at couple of weeks ago.  Not good.  Thankfully, they don't want to do more shots yet.  We're going to try to make a few changes in her meds to see if this will help.  Personally, I don't feel like this is the problem, I think that there's something more going on, but what do I know??  The other problem is that the shots gave Abby a rash on her face, we're still trying to figure out what to do to make that go away!  Abby goes back to clinic on Monday and they'll draw labs again then.  If they still haven't come up, I'm not sure what the next step will be.  For now, Abby is on house arrest again.  It's discouraging for her, she was just trying to get back into school and going to the gym again.  

Britt giving Abby her shot.  She had to fill in when my dad and sister were gone.  There was no way that I was going to do it, I have to draw the line somewhere!

Cute Abby, her color isn't looking the best, but she's been feeling okay!

This is my sister giving Abby her shot when my dad was gone.  Thanks Meri!

I  absolutely hate leaving her everyday when I have to go to work.  Sometimes she spends the days with my parents, which is good, but she wants to be at school with her friends. It makes me sad.   I guess we'll have anther stressful week of waiting.  I was talking to the transplant team a couple of weeks ago about how after a transplant, most families eventually begin to somewhat "normalize."  Things are never completely back to normal, but they start to get back to some kind of a routine.  But, they were saying that because of all of the crap Abby has gone through, we still haven't been able to get to that point.  I think that's true.  It seems like every time we get to the point of doing our regular things, something happens.  I have to admit, it's not easy.  Not for me, Brittany or Brock, or especially Abby.  It really starts wearing on you.  I seem to wake up in the morning as tired as I am when I go to bed.  I've been trying to go to the gym at 5:00 most mornings before school, but it's hard.  Some mornings when my alarm goes off, I really question whether I'll be able to make it through the whole school day if I get up that early.  It seems like there's always something to worry about, we seem to trade one set of problems for another.  I know everyone told us that after the first year things would get easier, but maybe they meant to say after the first year and half!  That's what I'm counting on anyway!  If you have any new ideas to keep Abby busy for the next few days, let me know, I'm sure she's already bored.