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5 more days of school!

The kids are counting down the days until summer vacation :)  5 more days and they are free for a few months.  They have been outside so much playing baseball, riding bikes and Gav's new scooter, playing in the playhouse, etc... I love that when Gage and Grace want to go out Gav follows.  Last year he still needed a lot of pushing to get out and be a kid.  He was used to being guarded in everything he did due to his g tube, port, hickman line, PICC line or recovering from surgeries.  Just thinking of all of that makes me feel kind of sick to my stomach.  I don't ever want to go back to that life for Gav.  We did what we had to and did not want to give up on him.  He never told us he wanted to be done or quit, he always had something inside of him that wanted to fight.

Yesterday Gavin had a progress test at physical therapy.  He did very well!  Some of his goals he met and exceeded and most he met.  The only things he still needs to improve on are the balance type goals.  This has improved but we will continue working on it.  He was on an amazing track to physical fitness last fall, until the blood clot.  I can only imagine where he would be today if that didn't knock him back down.  He's climbing the mountain, again - and it is tiring and exhausting and sometimes it doesn't feel like we are getting very far.  Then I think back a few months and I am amazed at the differences.  He has come so far.

Now that Gav lost the PICC line he only gets one home nurse visit a week rather than two.  Fridays the nurse comes out to change his insoflan catheter for his blood thinner injections and does a quick check up.  His meds are very manageable, mainly Lovenox, Keppra and Palbo (Joe Bully med).  He has anti nasuea and acid reflux meds as needed.  Lately he keeps saying "Mom when do you think I will be myself again?" I try to remind him that before we knew about Joe Bully he lived with him his entire life but we didn't know it.  I ask him to think of all of the things he could do to be "himself" during the first 6 years of his life.  The hard part is that the treatment to get rid of the tumor has caused more deficits than the tumor did before.  The chemo made it grow, the surgeries disrupted connections, the blood clots decreased blood flow and so on.  The side effects from treating it are the main cause of his struggles - so being himself is not easy.  Every day though, more and more things remind me of my Gav before - the less guarded, carefree Gavin.

I was thinking today about all of the support we have had over the past 2 years and I am forever grateful for every single person that has helped us in some way.  I cannot imagine how much harder this would have been without all of you.  I have tried to sit down and write all of the names of people that have helped us and in what way and it's an impossible task because there has been so much.  I wish I had time to write each and every one of you a beautiful thank you, because I am here - pretty sane, and Gavin is alive and our family is doing wonderful because of it.  Going from the life we had, to it being turned upside down was devastating.  I think back to nights where I would be awake all night in the hospital and I would just cry.  Reading your words and cards kept me going.

In my next post I will have the show and t shirt info :)

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Comments

3 Replies

Daniel Geist
By Grandpa Geist
General Gavin;
We are proud of you! in a whole bunch of ways Your kind, generous, thoughtful, Smart, inquisitive ,wise beyond your years, a pioneer, a wonderful person, a kind of superhero to many. an inspiration an Awesome Son, Brother, Cousin, Friend, Grandson, Classmate, Patient, Neighbor, Citizen, "Santa's Elf"- Person, etc... - and a funny funny witty young man not to mention and old soul! I wish that I could be there every day to experience it all along side you! I will say that you have made me Laugh and given us all a reason to have hope. There is a lot more I could add to this and I'm hopeful that I will - for now little buddy, I'll just say I love You! and in The words of almighty God to (Joshua 1' 0) continue to "Be Strong and Brave"
Grandpa Dan
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3 people hearted this
Heidi Chester
By Heidi Chester
To keep the Faith and Hope going when times are good is easy, it is when the times are tough and the road is uphill that it seems impossible, often replaced with the feeling of hopelessness. Gavin's journey, the family journey with this has proven that you are stronger and braver, full of Hope and Faith no matter what. Thank you for reminding us and being an example of strength, Faith, determination, and Hope, even when times are hard.
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1 person hearted this
Jim Maydelle Fennick
By Jim Maydelle Fennick
Thanks to you for your faithfulness in keeping us posted so we can pray more intelligently. Your family's stamina and determination has been an inspiration! Love Hugs and prayers all around!

Maydelle and Jim
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1 person hearted this