Wednesday, September 18, 2013

Routines

Lots of new routines.  New schedules. More commitments.  Overflowing To Do Lists. Full Calendars. 

Our lives are no longer our own.  Kindergarten is a whole new ball game.  Oh, yeah that’s right our girl…  this one right here:

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Yeah… she started Kindergarten!

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I know… I blinked and that happened.  Not really but sometimes it feels like it… and sometimes it feels like it took FOREVER to get her to this point.  But, here she is.  Healthy happy and loving life in Kindergarten. 

Oh and this little man…

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you know my baby.  He has started Pre K and all of a sudden it is like a switch has gone off and he is printing all his letters and sounding out words…he is only 4.

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With new school routines come a whole slew of other routines… we have dance class and soccer.  Need to sign up for Girl Scouts and Sunday School.  Their time is no longer only our time.  I mentioned I started working part time (very part time) I give props to you full time working outside of the house mamas.  I have no idea how you make it all work. 

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Tuesday, September 17, 2013

Reflections of my 33rd Year

Tonight I am reflecting on the last year.  After a day of being loved and spoiled by my husband and kiddos… after having cake with my mama and Georgie… and reading the overwhelming number of facebook messages from friends & family.  My heart is full and I am reminded of how wonderful this  life is.  Even though this life is hard and maybe mine has been a bit  harder than most… so hard that I feel I am celebrating my 53rd birthday rather than my 33rd birthday.  It is what it is and maybe I can gain some of my years back…maybe not but the bottom line is… it is what it is and I would not change a thing.

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Because I am here beside the man I love with two of the most amazing children. No, the road is not always easy…but we get there some how.

For the first time in 3 or so years I FINALLY had a different wish when it came time to blow out my birthday candles.

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thoughts at 33

I still can’t believe that my wish from last year came true.  Katy has her heart and is doing well and we are ecstatic.

Katy getting her heart was not the end all fix all… we still had a lot to do.  It was a lot harder than I expected and I was a bit underprepared for that piece of it.

Mike is still my soul mate and I am thankful each and EVERYDAY that he is with me on this journey! I love you with every piece of my heart and soul.  Thank you for EVERYTHING.  Thank you for being the best husband and daddy.  Thank you for enabling me to be the best mommy. 

I have lots SIXTY pounds and I feel great! I never would have imagined that a time would come that I would have had 60 pounds to lose would come but it did and I lot it and it feels good!

  I am working a part time job at  a local scrap book store and LOVE it. 

I still love paper crafting making it my longest working hobby.

I am still thankful everyday for Katy & Patrick I feel so blessed to have each of them.  They bring such joy to our lives.

  The kindness and generosity of strangers has not been forgotten and  I am looking into ways that we can begin to give back

Wednesday, September 04, 2013

Meet the Teacher

Today was meet the teacher… as in meet Katy’s KINDERGARTEN teacher.  KINDERGARTEN.  How is it that this little girl is ready for Kindergarten.

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But boy, is she ready… more than ready.  She is so excited and can’t wait for tomorrow.  She ADORES her teacher Mrs. Curry who is the epitome of the kindergarten teacher.  She is kind and sweet and has a great hand washing routine.  She is aware of Katy’s special heart and respects that there are no limitations.   All of my fears were quickly put at ease when I learned that Mrs. C. herself is dealing with a bit of immunosuppressant herself.  So she is very familiar of all the risks and fears and things that we are watching for to help keep Katy as safe as possible. 

I found it funny, maybe a bit annoying of the people who felt that as if Miss Katy hasn’t been singled out enough that for some reason she wasn’t entitled to a free and safe public education.  When the words were first stated.  That stung and I waited to respond.  I just can’t believe that someone could believe that their unvaccinated children had more of a right to be in a public school.  I know for Kate… It would be the worst thing we could do for her.  She needs to be away from Mike and I … She has spent much to much time with both of us for most of her life.  Not just in the sense of normal  interaction parents  with parents as many children have with their parents.  Given Katy’s medical needs she is with Mike and I a lot.  More so I can’t believe that they on some level think that they have the right to tell Mike and I what to do for Katy.  We have been making these decisions alone for the last 5 years and so far I’d say we have done very well.  Given that she was a baby we were told to terminate. 

I will have official back to school pictures posted tomorrow. If you get nothing else from my vaccination post RANT… please leave with this… There are 20 + kids in your child’s classroom add a teacher or two… if your child is sick be courteous and keep your child home.  No one wants your germs… especially my kid… because while most kids can fight it off with a day or two in front of the TV chances are she is headed to the ICU where we will pray by her bed side that the runny nose that some mom thought was no big deal doesn’t kill our baby girl.

Sunday, September 01, 2013

Let’s Catch Up…

Because big things are happening this week and I will want to share. ( Hopefully in real time) So excuse this random catch all post.  Which I hope will bring you up to speed.

Last blog update we were in the hospital and Katy was battling rejection.  That was back in July, and she spent all of August fighting the fight and has FINALLY turned the corner.

So in my defense I didn’t have a lot to say and it was all about survival.

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To be honest it has been a very dark time for me (us).  The thought of this heart failing Katy is heartbreaking.  I just keep thinking how could it be that she made it to transplant and the new heart would be what ended up killing her.  It was that real and that is scary.  At least with Katy’s old heart I always knew we had options…we weren’t out of time.  If Kate continues to  reject this heart,there is really nothing that can be done. So that has been hanging over our heads.  All of us thinking it… no one wanting to talk about it.  Of course we knew going into transplant that this was a risk… rejection is kind of a given.

However, what we didn’t expect is that Kate would have rejection combined with CMV and the possibility of her not metabolizing the antirejection meds…which is what put her at risk and caused both the CMV and the rejection.  It is very disheartening when the immunosuppressant guru  of our transplant team says that Katy’s rejection is the worst case he has seen since he has been with the program. He then goes on to say that he has no idea why she hasn’t responded to the aggressive treatment. And all but throws his hands up in the air out of frustration. 

Finally after 5 weeks and 2 super doses of steroids the third biopsy finally showed that although Katy is still showing signs of rejection.  It is now a 1R which is substantially decreased and a step in the right direction.

In between all this craziness and hospital stays we have strived to make this a fun summer.  Unfortunately Katy was too sick to travel North for Cousins Weekend.  But, Patrick and I did escape for a quick 24 hour whirlwind stay with our favorites.  I needed some love from Nora and Patrick had a blast with the cousins.   I missed Katy and couldn’t last the weekend.

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While we were away Katy and Daddy had a Daddy daughter date! Dinner and a show! They went to go see Annie at the local theater house.  SHE LOVED IT!

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We tried to balance our days.  Katy needed a lot of time to rest.

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And we were back and fourth to the hospital A LOT

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But, we did spend some time at the park…

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We visited with family that was in from out of town and had fun playing with Aunties.

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Katy got her back to school hair cut and her nails done! Girl was dying for a day at the salon!

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So we fit it in between Echos and blood draws!

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So although our summer was lacking in lazy days at the beach…and included way too many days at the hospital.  We survived.  We had fun.  We are excited to start this next chapter.  Katy is starting Kindergarten this week and Patrick has already moved up to Pre K.