Our Fight against Gaucher's Disease type 2 or 3
We just got our list of tests and consultations that they are going to be doing on Hannah next week. Fortunately, they have spaced them out so that she only has 2 or 3 things a day!
Fortunately, none of these will require IV or sedation like the MRI and CT scan last time.
There are certain people that come into your life who have words so powerful that you can’t get them out of your mind. They don’t mean to be so prophetic, but with no intention on their part, a single phrase becomes ingrained in your heart.
I was talking to another nGD mom a week or so ago who was having to face a very difficult decision, one that I have feared that I would have to face since we got Hannah’s diagnosis 14 months ago. It came down to how much medical intervention would we, as parents, put our children through in order to keep them with us versus how much quality of life would it give them.
I did not know what decision she and her husband would make at the end of the conversation, but I stayed up all night long thinking about it, what if it was Hannah I had to make that decision for? What would she decide? What would I decide? I had prepared myself for whatever decision they made, because unless you are in that child-specific situation, there is no judgment that can be made. Honestly, I was as torn as she was.
She made the comment to me about just needing to see her daughter smile again to know that it was the right decision to go ahead with the invasive medical intervention.
Almost as if was planned, Hannah crawled over to me at my desk, and she just sat there with a big smile on her face looking at me. A true “I am happy, mommy” smile. Then it hit me. THAT right there is why I make the decisions I do for Hannah. THAT is why I work so hard to get her therapies, specialists, and equipment that will help her.
I want to see that smile, all of the time. No, I NEED to see that smile. Hannah’s smile is what keeps me going every single day. She may not be able to talk or walk or put a toy “in” a box. But she smiles, at me. She hugs me with a tight grip as if I am the most important thing in the world to her. She lights up when I walk in the room after being away for a short time.
It is her smile that keeps me fighting for her.
The mom just posted a picture of her daughter in the hospital yesterday…not in any distress, comfortable, and yes, smiling. After seeing that picture of her little girl smiling, I know she
made the right decision for her.
Hannah, 19 months, smiling
I can’t believe that it has been 8 months since we last visited the NIH! Time definitely flies by.
I’m not expecting any real surprises, but honestly, that is what I am anxious about. Hannah is known to surprise us and throw things into the mix, so I don’t want any surprises. I know that she is doing another EEG, BAER study, meeting with PT/OT, having another abdominal ultrasound and/or CT scan, and a couple other things. Nothing as drastic as having to be sedated for an MRI or having to deal with an IV this time, thank goodness!
I’m looking forward to seeing Dr. Sidransky, Dr. Goker-Alpan, and Catherine, their coordinator. They are such wonderful, down-to-earth, and caring specialists. We really felt like they were taking a personal interest in Hannah, spent quality time with our family, that she was just not another number.
What do I hope to leave this visit with? Good news. But honestly, I just want to know exactly how Hannah is doing in relation to this disease. They are the ones who can tell us this more than anyone (even continuing our “no prognosis at this point” is good news!)
We finally got our Cobra information last Friday in the mail. Our insurance lapsed on March 1st since my husband was let go from his job. As soon as we got the info, we read it, found out how much our payment was going to be, and wrote a check to cover 4 months worth of insurance. Then my hubby high-tailed it to the post office to send it overnight so we can get coverage reinstated as soon as possible.
I got a call from Texas Children’s Hospital’s billing office saying that Hannah’s infusion on Monday may be disrupted because our insurance is showing ‘inactive.” I explained to them that we elected the Cobra and that we were waiting on them to reinstate the insurance, which we read is retroactive all the way back to the first day it lapsed. She kept saying, “Well, I will need to talk to someone about this, but I may have to call you back to cancel it.”
I talked to the Infusion Center director, and she said that she can have Hannah’s doctor write a letter of medical necessity that Hannah get her infusion without problem so that they will go ahead with the infusion. Worst case scenario, she said, was that we would be charged for the services until Cobra is activated and just not to pay the bill when it comes to us.
Of course that makes me nervous, but Hannah NEEDS to stay on schedule with her infusions. She has not missed one yet, and I don’t want to start now!
I’m keeping my fingers crossed that they don’t cancel on us for this Monday’s infusion!
Hannah has really started improving on her crawling. Until about 4 or 5 weeks ago, the longest distance she would crawl would be around 10 feet. She really never would initiate crawling to go any distance (like to the other side of the room), she always stayed put in about a 10-foot area.
In her play area in the living room, we have a stone walkway separating the living room and my office (where she can easily see me). She would see me at my desk, and she would just cry out when she wanted me. Or she would crawl up to the stone walkway, but she would never go across. It was almost like an imaginary barrier for her.
Over the past 2 weeks, Hannah has started branching out in terms of getting some distance in her crawling. Last weekend, during our family movie night (DVD in our bedroom with the kids on the floor), Hannah ended up crawling from her upstairs little play area all the way across our room towards the balcony! As soon as we realized where she was, we all were shocked and laughing! Thank goodness we had the upstairs gate closed!
Since then, she has started crawling from our bedroom into our bathroom when it is her bathtime. Even though this is only about 10 to 12 feet, she is going from carpet to floor. And she has done it every bathtime since she first figured it out! She will even follow Daddy or I into our closet, which is about 20 feet away from her playarea in our room!
Fast forward to tonight…
Abigail was taking a shower in our bathroom tonight. She left her pajamas on the floor in front of the shower. Hannah, on her own decision (since we were in our room), crawled to the middle of the bathroom (past the shower), turned around, and started to crawl back. She stopped at Abigail’s pajamas, played with them for a bit, and then decided to take them back with her as she crawled into our room!
It was so dang cute watching her crawl with these long pieces of clothes on her hands! Then, if that wasn’t cute enough, she ended up plopping back down on the carpet in our room, and just started staring at these pieces of clothes on her hands.
It was hysterical! And best of all, it was a reminder that Hannah is still learning new tricks….just at her own pace.
(And yes, next time I’m bringing my video camera up here!)
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