Beginnings of a Hope for Hannah Walk!

I was chatting with my neighbor after we got back from the hospital, and she is going to help me put together a fundraising walk to raise money for the Children’s Gaucher’s Research Fund and to get our MOUSE!  I was so touched and grateful!!  We are going to meet next Thursday night (3/5) to brainstorm ideas, and I’m going to invite a few other moms over to see if they can help us come up with a game plan as well, because I know that as much as I would probably try to do it on my own, I just can’t do it.

We were thinking about a walk, a kid’s walk, and perhaps a silent auction and/or raffle, and obtaining local sponsors and donations.  Such an overwhelming concept, but if I can get some others to help me, this is actually doable!!

2 Treatments Down — a lifetime more to go!

It only took two attempts at an IV this time, thank goodness!  As soon as we got to the infusion center, the nurse handed me a bag with IV, flushes, tape, etc., and tells me to go straight upstairs and have Jenyce do it.  She is the awesome nurse that was able to get it quick and easy last time.  I’m grateful!  Even though it took two attempts, Jenyce really is a pro!

It was a noneventful treatment, and for that, I am so thankful!!  No complications, no surprises, just a normal infusion.  Hannah slept for almost 3-1/2 hours straight (except for about 30 minutes when it was over), but now she is wide awake at home and playing in her exersaucer.  I wonder if she even remembers it!

Phew…two down.

Second Cerezyme Infusion tomorrow morning…

Two weeks flew by — I feel like so much has happened since Hannah’s first Cerezyme enzyme replacement therapy infusion.   I hope the nurses can get the IV in on the first attempt this time!!    I’ll update when we get back.

I’m not as nervous this time, but I am still anxious.  It is still such a new procedure for us.  I know it will become a “way of life” soon, but I’m not there yet.

I never thought making a video was so emotional…

I finished the script for Hannah’s video last night. It was very depressing trying to write a script that would share her story, what she has been through, and if we can’t find a treatment, what she has in store for her. I was very depressed when it was over.

Since I need to have the video done by February 28th, World Rare Disease Day, I started working on it today. I’ve made it about 20% of the way through before I started tearing up. And I’m not even at the “real” part of the video yet, just the introduction. I have to keep playing the pictures over and over again with the text, and it is almost like each time I have to view it to edit it, I am getting stabbed in the heart.

Heck, I’m blogging right now because I need a break from it. Right now, Hannah is sitting with Daddy on the living room floor (on the blanket), and Daddy, Big Boy E, and Little Girl A are attempting to play the game of Sorry. I say attempted because Little Girl A has no idea how to play, and it just really isn’t working out. Nothing like a little family chaos to bring me back to a place where I feel a bit better…

Alec Baldwin Explains Hannah’s Disease Family – Lysosomal Diseases

HideAndSeek.org
Helping to find a cure for Hannah and other kids with lysosomal storage diseases!

So I over-reacted and called the pediatrician…

Tonight while I was downstairs, my hubby told me to come upstairs because Hannah looked blotchy.  Of course I ran up the stairs to check.

Sure enough, her face was really blotchy, especially on her upper eyelids, and her eyes were watering like crazy.  She was acting like she wasn’t feeling that great.  Twenty minutes earlier, she was laughin and being herself.  Also, when I picked her up under her arms, I felt a slight vibration when she would breathe.

Usually, I would wait and ride it out for at least a few hours or the next morning before making it a concern.

Not tonight.  I immediately called Dr. B’s after hours line, and it turned out that he was on call tonight (out of 8 doctors, talk about luck!).  Of course, the answering service wanted to hook me up with the night nurse first, but I told them it would be a waste, and I needed Dr. B. directly.  It couldn’t have been more than 2 minutes after I hung up with the answering service that Dr. B. called. 

We went over what her symptoms were, asked me if I heard any wheezing or stridor in her breathing (we didn’t).  He thought it could be an allergic reaction to something, so he wanted us to give her a 1/2 teaspoon of benadryl to see if that would make a difference. 

Sure enough, 30 minutes after taking the Benadryl, she was sleeping comfortably and her face was back to normal.  It must have been a reaction to something.  But what?

I know I totally over-reacted, but I guess that is my new way of parenting with Hannah.  I just had in the back of my mind that swallowing issues are one of the next neurological symptoms to look for, and one of those symptoms are watering eyes from having trouble swallowing. 

Nope, not related to Gaucher’s Disease at all.  Just “normal” baby stuff.  So why do I still worry?

Balancing Family Life after a Diagnosis

My new Houston Examiner.com Special Needs Article…
Please take a moment to click on the link above to read the entry there.  The more page views I have, the more chance I have of becoming featured on their main pages!  But since this is Hannah’s story, I want the article here too.

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Even though Hannah is only 6 months old, I feel that the life that I knew before we knew she was ill has been gone for a much longer time.  Things that I enjoyed before Hannah was here (such as certain television shows, projects, etc.), I find very little interest in these days.  I would rather spend that time with different activities, mostly ones relating to creating awareness and finding a treatment for my daughter’s disease before it takes her away from us in a few years.

I have made a very conscious effort towards making sure our family life is as normal as it can be for our kids.  They know Hannah is sick.  They know she has a lot of doctor’s appointments.  They know that she gets her “medicine” (Cerezyme enzyme replacement therapy) every other week down at Texas Children’s Hospital.  But they don’t know the extent of her illness and what Hannah’s prognosis is.  To our kids, Hannah is just the baby sister who loves laughing when they make funny faces and loves to sit on their laps.

I have this rule that I do not do “Hannah stuff” when our two older kids are home.  It would be so incredibly easy to become completely obsessed with my new advocacy mission and work on it every waking moment if I could because there is still so much that I want to do. 

Yesterday afternoon before my husband got home from work, the three kids and I were downstairs playing Wii Disney Sing-It Karaoke for almost two hours.  Hannah sat on my lap and watched as her brother and sister were playing the role of a rock star with the hip-hop moves and everything.  I even sang a couple of songs! 

It was all smiles during that time.  No thoughts of a little girl with a fatal disease.  No thoughts of a boy with ADHD.  No thoughts of money struggles.  Just fun, pure family fun.   After it was over, I realized how important these moments are for us.  These are the memories that I want my kids to have.  Heck, these are the memories that I want to remember! 

I need reminders like these more often.  I will not give up on working to save my daughter’s life, but I will also not give up on the fun family times that were the reasons that my husband and I worked so hard to create a family in the first place.   It is a balancing act that I am not yet experienced in, but in time, I know we will find the right balance.

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