Archives for March 2009

At the fundraising meeting a couple of nights ago, a good friend brought up that they were worried about us financially, and they felt that the fundraiser should be focused on Hannah and not on raising funds for research.  They also felt that people would be more willing to donate to a family instead of a “cause” at a neighborhood event.

After talking to a few long-time friends about this, they agreed that these friends were looking out for us, probably when we weren’t looking out for ourselves.  

It made me really think over the last couple of days (like I haven’t been doing that enough lately — see what happens when I slow down?) about our financial situation.  Yes, it sucks.  Now that I am no longer bringing in an income, we are living off our savings to make up for that income.  I know it won’t last forever. 

I have NO problem with the fundraiser and raising money for GD23 research, because that is the only shot we have of saving Hannah’s life.  Yet, I don’t want to be considered a personal charity case, either.  I don’t know why it is so hard for me to accept people wanting to help us personally like that.  But are we being irresponsible parents by trying so hard to raise money for research and not thinking of ourselves and our family?  Yet, if we do accept money for ourselves and we lose Hannah, I’m not sure I could handle the guilt of thinking that we didn’t try everything we could to save her.  Then what about Ethan and Abby’s future if we are forced into a more serious financial situation? 

My brain hurts.  I wish I knew what to do, what was the right answer.   Objectively, if it was someone else’s situation, I would tell them they had to protect their family first.  But in my heart, I don’t know if I could handle the guilt if we lose Hannah because we didn’t try everything we could.

When Hannah’s OT suggested a swallow study, it didn’t make me nervous at all.  Because of everything else she was doing okay, I really felt that it was likely just another “Hannah” issue and not GD23 related.  I mean, they were concerned that her laryngomalacia (poor throat tone) was GD-related, but it turned out to be old-fashioned laryngomalacia, and she outgrew it. 

But then I posted about it on facebook, mostly to learn what the procedure was.  (Those of you who are my friends on facebook may have read the comments I’m about to mention).  Two moms of GD2 children that have passed away, and who I have become friends with and have been a huge support to me, both made comments that this is what their kids had to deal with as well, and they both are convinced this is GD-related. 

I know they both were trying to be there for me and prepare me, and believe A. and L., I have NO ill-feelings towards you for it, as you two have been such huge avenues of support for me. 

But since reading their comments and reading the email from my pediatrician who wants to get this done ASAP after hearing the OT’s recommendation, I can’t shake this feeling that it may be GD-related, and that we are heading down a GD2 road.  

After tot shabbat last night, we went out for dinner.  I can’t tell you one conversation that happened during that time, because all I could thinking about what Hannah.  She sat in her high chair, and the entire time, I just wanted to touch her and look at her.  I completely zoned out everything else until the end or when I had to. 

I even tried blogging about this last night, but I couldn’t stop myself from tearing up each time I started.  

Please, please don’t let this be GD2 related.  I’m not ready for this yet.  I’m so not ready for this.

Today, Hannah had her occupational therapist come to visit to work on her solids eating, as we have made very little progress in that area.  It worked out perfectly, as Hannah was fed 3-1/2 hours earlier and JUST woke up from an hour-long nap.  After M’s last visit at our house (Hannah would have nothing to do with it), I was so glad Hannah fully cooperated this time. 

We did have some firsts today.   After propping Hannah up in her high-chair with a towel, she would actually play with the baby food (we tried carrots and bananas, separately) on her tray.  It was messy, but she enjoyed it!  She didn’t give us the total rejection face that she used to when she “accidently” got it into her mouth.  She also played with her little people in the food and put that in her mouth.  Definitely an improvement from what we were doing previously!  Who knew a little propping up on the high chair would help so much.

She still spits out her food most of the time and sometimes does a little, I don’t want to say “gagging” because that is more severe, but she does have that type of reaction at times when she swallows.  Not every time though.

She recommended that we have a Hannah do a swallow study.  Not necessarily because there is something obviously wrong, but because she felt it would be a good idea to see where we are at with her swallowing issues, especially since she is at high risk for swallowing difficulties (one of the symptoms of GD2 and GD3).   Even though I know it is not going to be an easy procedure to do on Hannah, I have to agree. 

I just want to know where we are at with Hannah.  If there IS a swallowing issue, then knowing about it now would make it easier for us to figure out what we need to do to try and get her to eat solids.  If there is no swallowing issues at this point, then we know that Hannah just hasn’t figured it out yet. 

I sent our pediatrician an email about this since I’m not sure it if I should go through him or our lead doctor (Dr. E, genetics).

I’m so grateful for such wonderful neighbors, I tell ya.

We had an informal meeting tonight (6 of us) to talk about putting together a fundraiser for Hannah.  I will admit, I felt overwhelmed and incredibly humbled with all of these amazing ideas they were coming up with and willing to do for us.   They came up with ideas like local dinner nights where restaurants will donate a portion of their sales to our fund as well as a community-wide walk/run and silent auction, most likely in September.  I was listening to all these ideas, and it just blew me away! 

I know that Hannah and my kids are worth it.  It is just so wonderful seeing that others are willing to help me fight for my kids, all three of them.  Not only am I working to save Hannah’s life, but I’m working to protect Ethan and Abby from having to see their little sister deteriorate right in front of them. 

I can’t wait to see what comes out of this!!