Over due.

This up date has been far away from the last one and for that I apologize. We went on vacation to see my Grandmother, she lives in the east coast near the beach and it's absolutely beautiful where she lives. She lives in a nice subdivision with awesome walking trails and nice people. I can't even begin to tell you how much Wesley loved it there, 5 whole days there. Sleeping in, naps, riding his tricycle, the beach. He rode his bike about a mile a day between the paved trail and the sidewalks! He would laugh and yell woo hop the entire way. He was filled with so much joy. The best part about this vacation was that we got to go a week without therapy, nurses, Drs, and needle sticks. 9 days he got to be a normal little boy. He was so happy there I wish it was possible for us to move. If only it were that simple. 

When we got back it was a rough adjustment. I didn't realize how busy we were until we had our first entire week home. Last November it started with one therapy day, then in December we added another day. Come January we added a third therapy on the second day. Then his Dr appointments started picking up like crazy. Then we finally had a diagnoses and it was hospital palooza complete with a two day hospital stay and surgery at the end. Then they added infusion days. We are gone out of house for Wesley's needs 4 days out of the week on a good week. And it's an even better week when we don't have to drive to the children's hospital. 

After an awesome vacation when we got home I got to experience the feelings all over again. It's heart breaking watching Wesley go through what he does every week. It's taken me so long to write this is because I have been hiding, basically. Maybe if I can just avoid it for a little longer it won't be true. Denial, it could be called. It's hard on my momma heart. Accepting. Coping. Stretching myself so thin so he has a better chance of having the best life he possibly can. 

The medical part of this update is that Wesley was diagnosed with hydrocephalus. It's excess water on the brain. His neuoroogist failed to mention that to me when we were there 6 months ago and this time he was like "oh, I didn't tell you?" 

I have been working on getting a lumbar puncture to check the pressure of the fluid in his brain since before I figured out the Dr had withheld information from us because Wesley has headaches and I have assumed that they were from pressure. 

I am very fed up with dealing with Drs who know nothing about MPS! 

Wesley is doing amazing with infusions. He can put his socks and shoes on by himself. He is starting to walk and run quicker and he is exploding with words. His newest are "donkey" and "it's cute" 

He fills my heart up with so much joy! I love watching him learn :) 

Thank you guys for praying, supporting, and encouraging us! 

Have a warriors heart, 

Wesley's Mom 💜

Fighting Discrimination

Today was our first true experience of discrimination. 

We had an appointment at the Social Security office before Wesley's normal scheduled therapy today. We got there and it was busy. It always is. Really, every single time I've been in there it's been packed. Wesley had his iPad going and the security guard told me that the volume wasn't allowed on, I said okay. I turned it down. That's hard for Wesley to do as he is hard of hearing and at least wants to hear a little bit. I had to take his iPad away from him because he doesn't understand to keep the volume down. 

After I took his iPad Wesley started getting restless, as you know, children do when they are bored. He started laying on the floor, flopping around, switching seats, being loud, playing with the handicap door open button. As I redirected Wesley away from the door for the third time; he started to cry. So I picked him up and brought him back to where we were sitting. He was starting to settle down when the same security guard that mentioned the iPad said "We can't have that in here, you will need to leave." I started to cry and explain that he didn't mean it, he couldn't help it and that our number was next in line but before I was finished he cut me off and said "that's enough.".

Fine. I understand that crying children are disruptive. I get that. It's also kind of inconvenient, but we had already been in there for 35 minutes and for that amount of time Wesley's behavior was pretty good. I grabbed my diaper bag, Ava's carrier, and Wesley's hand and we were walking out the door. 

This same security guard began to FOLLOW ME TO MY CAR explaining "there are people in there that can be set off by crying children and that I should be more considerate of others". We are all the way to my car by now, Wesley is crying because he thinks he is in trouble. This man is shouting as he is still trying to explain his a**holishness, as if somehow I should tell him what he is doing is okay. After Wesley was in his car seat, I walked around to the other side to put Ava in when I stopped. 

I stopped and looked at him then I just lost it and yelled at him, "Are you kidding me right now? Do you think I would be here if I didn't have to be? Do you think that we came here for fun? No. Do you think this is making him [my son] feel any better? Is this making anything better? You are mistaken and you are wrong. My son can't help this behavior because of his disease. And just like those people that 'might be set off by a crying child' those people are setting him off. Are you going to ask them all to leave? He is a little kid.".

In that moment, he noticed my disabled license plate and he knew he was wrong. He turned around and went inside. I put sister in the car and got in and cried. 

How dare he. How dare he kick us out because Wesley was crying for 2 minutes. Normally, I receive the looks, yes the dirty looks, but no one seemed particularly bothered by him today. I cried because I was in shock and angry. He wouldn't even let me explain. He obviously has no compassion for adults or special needs children. 
My sweet boy looks "normal" and therefore people judge him when he is having a hard time behaviorally. I'm still upset about it, partly. I have never been treated so poorly in a place of business. I never thought I would have to defend Wesley's rights in such a harsh way and as my MPS family (support group) told me, it probably won't be the last time. I've accepted that. I've fought a long time for Wesley. I've fought doctors for diagnosis, therapy, further testing, more diagnosis. And I'll fight for his rights. They are the same as anyone else's and no one will convince me otherwise. 

Have a Warriors Heart friends. I'm glad this day is over, 

Wesley's Mom 

P.S. The security guard then came back out and got us in next... 

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/

I Saw You

I saw you as we were walking back from the courtyard play area to our small hospital room. You were sitting on the floor with your phone up to your ear. Your cheeks were wet with tears and your eyes red and swollen. Your glasses were sitting on the floor beside you. Your hair was messy. You were exhausted and probably hungry. When I looked at you, I saw myself: A mom whose baby is fighting for its life, as mine fights for his every day.

I know those feelings well. Heartbreak. Fear. Helplessness. Loneliness. Tiredness. Extreme exhaustion. Hungry. Thirsty. Wanting sleep but not being able too. Constantly on the verge of falling apart. The tears always being right there, reserved until the quiet or hearing news that isn't what we hoped for. Feeling like you never do enough.

You didn't see me earlier, but at 7:25 the previous morning, my baby was being wheeled into surgery to have his port placed and his hernia repaired. You didn't see me fall apart as soon as those doors were closed. You didn't see me cover my face with my hands and turn towards the wall in an attempt to hide my tears, because I just couldn't take it anymore. Where the surreal meets real. Where the preserved feelings turn to raw stomach wrenching emotions and freshly poured tears.

You didn't see me earlier talking to a nurse, through my tears, about hating my sons disease, sputtering that life isn't fair. Wishing to myself that I could keep it all together. Wishing I wasn't so helpless and that I didn't even have to be here. Wishing this life was only something I saw scrolling through Facebook, because then it would be okay, it wasn't my life. Then kicking myself for being so selfish.

You didn't see me cry as the nurse handed my baby to me in recovery and began rocking him as the nurse told me about the heart complications he experienced while waking up from anesthesia. You didn't see me pet his head and thank God they had medicine to help bring his heart rate down from 269 beats per minute. You didn't see me cry while laying on the bed with my baby as they transferred him to his hospital room, thankful that he wouldn't let me go.

I don't know what is going on with your baby, but I know your love for them. I saw it while you were there, crying on the white tile floor explaining the news or how you were doing to the person on the other end. Since I saw you, I've thought of you often, along with all the other Mom's who right now are sitting on the hospital floor, leaning against the wall, or holding their sweet baby at this moment while tears stream down their faces because things are out of their control.

I wish I could have waited for you to get off the phone. To tell you that you are a good mom. That you are doing enough. That what your baby is going through isn't your fault. That it is awful and horrible and unfair. To ask if you needed anything. To remind you to eat something. And especially to remind you that every hug, every hand hold, kiss, snuggle, and "I love you" you give your child is helping. That you aren't forgotten. And most importantly that you are not alone.

Just like I saw you, God sees you. He is there to hold your hand whenever you need it. He loves you and your sweet baby. Just like he loves me and mine.

Love,
Wesley's Mom