Update: July 31, 2015

We were informed today that they cannot find a local facility to take us for Wesley's weekly ERT infusions. They are still looking, but our nurse said that most kids come here every week, because our Children's Hospital is the best place to get the quality care needed. This delay hurts my momma heart. I don't want to drive this long road forever. I'm very tired. We are overly busy as it is with therapy and his other appointments. Infusions closer to home were great news. That's been put on hold for we're not sure how long.

Wesley had an audiologist appointment this past Monday to try and see what we were doing wrong with his right hearing aid. It keep feeding back (screaming) no matter what I did to try and fix it. Turns out, it was malfunctioning so it got sent off to get fixed. We are blessed with a wonderful audiologist who truly cares about Wesley and listens to my concerns. 

Currently we are at infusion number 7. Wesley didn't want to take his medicine today. I had to hold him down and force it and that's truly awful. I hate doing that.  :( 

The numbing cream completely numbed his chest port today, although he was screaming from having to be held down, he didn't flinch at all when the needle went in. I've remembered to put it on the last two times as I keep the cream in my backpack all the time now just so I will have it.  Wesley is about to fall asleep. He is falling asleep with his "Moogie", my mom. I'm laying with Ava trying to get her to take a nap. She is so cranky today and since she is mobile now, she is getting harder to contain and keep happy as she wants to investigate everything by herself.

Infusion # 7

Thanks for reading. 

Please keep us in your prayers. 

Have a warriors heart, 

Wesley's Mom

Honesty-Journal Entry

Hi Warriors-

I will warn you. This isn't an update on Wesley. This is more a journal entry for myself. To get this awfulness off my chest. 

The shock of Wesley's diagnoses has warn off. I'm emotionally and physically exhausted from trying to keep my sh*t together. If you must know the reality of it all, I'm not keeping it together. I don't really even know what "it" is anymore or how "it" is supposed to be contained. Like some things, I have to groom and make myself socially acceptable to keep from scaring others. I have to keep myself from ugly crying to each person who asks me how I am doing. I want to break down. I want to cry and I do. I cry before I go to sleep most nights, if I even go to sleep as I have been, having strange bouts of insomnia that include half sleep and waking up startled.

 I want to cry as I watch my son eat cereal for breakfast with this beautiful innocence he has. I want to cry as I scrounge up some energy to actually even feed myself something other than coffee. I dig a little deeper when I have an hour and a half of sleep before forcing myself out of bed to start the day and making sure we have everything to have an easier, successful drive and ERT infusion and back again. Like I did just this morning. 

How are things supposed to be the new normal when the new involves things that are hard to accept? How is that supposed to work again? This disease is stupid. This disease has hurt my momma heart more than anything I've ever been through and for anyone who knows me personally knows that has been a lot. I love my son more than anything that's ever walked this green earth besides Jesus himself. 
I know that MPS is part of why he is the amazing person he is and I wouldn't change that. Just the living part. The growing up part. The regressing part. The part where they lose the ability to recognize people they love. Wesley is still a long time off from that hopefully, but that heartache is still there. It's some day. It's still some day. Tomorrow hopefully will be a better day than today was because my heart is tired. I have moments where I lose my hope and today's been one of them. No parent should ever have to live with knowledge like that, because the time just goes quicker and quicker; faster than before. Please just pray for me as I work through all of these emotions the best I can. 

Make-a-Wish Update

Hello,
It's Wesley's Mom. I know it has been awhile since I have last written. I am so, so tired.

Make-A-Wish came to our house. I am so thankful that foundations like this exist. I was thankful before, but now they are giving my child an opportunity to do something we could never do by ourselves. There's also a great sadness that came with the volunteer's visit. As I have mentioned before, a lot of the time, when we are in what is our 'new ' normal routine of life (therapies twice a week, weekly 4 hour drives to the ERT infusions, other doctor appointments, etc.), I forget Wesley's prognosis and it seems surreal. Almost.

That day I was reminded why Make-A-Wish existed, to grant wishes for dying children. As a Mom, that is a hard thing to remember, that this is the life of your sweet child. My baby, my beautiful, bright eyed, sweet natured little boy. It is heart shattering. It's bitter sweet. I know I promised to post Wesley's wishes right after, but the truth is, after it was done, it felt private. I had to take it all in. I had to stop and breathe and take some time to tell the people who were close to us and share my feelings with my closest friends first. I had to cry a lot and stomp my feet a little because this is really happening. Wesley has MPS 2 (Hunter Syndrome) which these days sometimes still comes as a shock and now all the wonderful things that Make-A-Wish offers to him makes it more real. It's exciting. It's sad. It breaks my heart. It makes me happy. I feel crazy sometimes with all these emotions that these circumstances make me feel. 

Thank you for allowing me time to keep these things to myself for awhile until I was ready to share them with all of you. 

Now for the moment you all have been waiting for... 

For Wesley's Wishes he chose three things; 

1.) Disney World 

2.) Thomas the Train ride

3.) bigger fish tank for our house 

They will let us know.  :)
Thank you all so much for your continuous support, love, and especially prayers. 

Have a warriors heart, 

Wesley's Mom 

The Ugly Question

There's one question that makes me cringe. It makes me want to hide. It pulls on my heart strings more than any other question I've ever been asked. Yesterday, the Make A Wish Foundation volunteers came to our house. (For those new to the blog, Wesley qualifies for a 'Wish' because the prognosis for the severe form of Hunter Syndrome is a shorter life expectancy, not past the first decade for many with this diagnosis.)
So, over the gifts, the paper work, and their list of questions, this one came up. The ugly question. The question that makes me sob in the dark when everyone is asleep.

"What does Wesley want to be when he grows up?" 

I answered, he doesn't understand that he grows up. He doesn't know that's what happens eventually. On the outside, I looked calm and collected, but on the inside I wanted to cry. How could you? How could you ask such a question? The whole reason we get an opportunity like this to begin with is because Wesley, more than likely, won't get the chance to grow up. 

After some thought on why they ask that question to terminally ill children and their parents...
Children dream. They imagine. And I'm sure some of them don't even know what's happening. Wesley doesn't. Wesley doesn't know his life expectancy. And we won't ever tell him. He doesn't know that this disease will slowly shut his organs down to the point they will eventually fail. And we won't tell him. He won't ever know that some day, unless they find a cure or God miraculously heals him, he may lose his ability to walk. We won't ever tell him.  He believes in himself. We believe in him too. We will comfort him and help him get through these days. We are and forever will be, Wesley's greatest fans. 

I just hope one day it doesn't hurt so much. I hope it's no longer the ugly question. I hope one day he can be asked that question but it will be different. I hope one day it's:

"What did you want to be when you were LITTLE?"  

We're so grateful for your support on this journey.
Keep praying Warriors!

~~~

Wesley had his 3rd infusion Monday, the 29th. We are starting to notice a difference in his energy levels! And he also needs to be molded for NEW ankle/feet braces. The width & height of his feet have changed as the ERT (enzyme replacement therapy) is helping rid Wesley of all that nasty gunk (the build up of the specific MucoPolySaccharides, also known as GlycosAminoGlycans-GAG).
We are so happy about this news!!! 

Wesley & his Daddy passing the infusion time (4 hours) with a movie!

Have a Warriors Heart, 

Wesley's Mom 

To learn more about Hunter Syndrome & current research, please check out this short video:
http://projectalive.org/