Archives for March 2011

These next three months are going to be absolutely nuts!

We close escrow on our new house on April 17th!   We have to be out of this house by the end of May.  Sounds doable, right?!   Right now, we are trying to figure out how we are going to layout the new house.  Basically, we now have two extra rooms with big pieces of furniture and storage, so we don’t know what to do with it at this point and what we are going to be able to squeeze into the new house.  Losing 700 square feet is a lot of “stuff!”  But we will make it work!

We also got tentative dates for Make-A-Wish.   The last week of April or the first week of May.   Hannah’s doc still hasn’t given the official approval yet, but the Make-A-Wish grant volunteer wanted to see what dates would work better for us because they want to make sure that we get to stay at Give Kids the World.  Daddy and I want so badly to start planning for this trip, but we aren’t going to do it until we get the official go-ahead.

Abby’s birthday party is coming up as well.   We are going to do a park party on April 10th (thanks to my mother-in-law who is doing most of the planning!) and we told her that if we do go to Disney World that we will also celebrate it there too.

Oh yeah, once we close escrow on the new house, we have to paint and recarpet the house before we can start moving stuff over.  The carpet is beyond nasty, and we promised the kids we will give their walls color.  We also were talking about breaking down the wall between the master and Hannah’s room to make one big room (since Hannah sleeps with me at night now), but I’m not sure how much money that would cost.   This way we would have a home office space for both of us plus room for our king bed and a twin for Hannah right by us.

Also, there may be a possible NIH trip in between that would coincide with a possible documentary that is being produced on Gaucher’s disease back east that Hannah and I have been invited to be a part of.

Can’t forget our regular stuff that we have to do  – doc appointments, therapies, treatments, school, homework, Daddy out of town on multiple business trips, etc.

So when June comes around, I think I am just going to breathe!

Abby has been having some troubles over the past couple of months, both at home and at school.  She has her own medical issues (non life threatening) on top of all this.

After Daddy came home from work tonight, I took Abby out for some mommy-Abby time.  With the exception of doing homework each day and watching TV on some nights, we rarely have time by ourselves for some real fun.   My plan was to have some fun and then get some dinner and see if she would open up about what was going on.

We decided to go bowling and had a lot of fun.  We then played some air hockey and that was even more fun because we both got really animated and involved.   Then we grabbed some dinner.

It was hard getting Abby to open up.  She didn’t want to talk about anything serious at first, but I thought that maybe if I asked her a few questions that she would open up.

Initially I had thought that she was jealous because of how much time Hannah takes away from her and I or how hard it is because we couldn’t do as much out anymore.

I was surprised when she said she wasn’t jealous about any of that.  Then she started crying.  She didn’t want to tell me at first, but then she finally said, “I don’t want Hannah to die.”   OMG, that just hit me in the gut.  She talked about how scared she was when Hannah was in the hospital this summer, how she was mad that the doctors can’t help Hannah, and how much she thinks about Hannah all the time she is playing with her cousin (who is 6 months younger than Hannah) and how Hannah can’t do the things her cousin can.

She then told me that she was mad at Daddy and I for making Hannah sick.   When I asked why, she said it was because Daddy and I gave Hannah the bad gene that gave her this disease.   It was so hard for me to hold it together during this conversation.   I kept saying that Daddy and I didn’t know about it and that we would never want to hurt Hannah or them.  She knew I meant it, but she broke down and I started to break down and we just hugged each other right there in the restaurant.

She made other comments during this conversation like how she is afraid that Hannah is going to die before she is 4, how she wishes we could get the trach out because that means Hannah would be getting better, and just so many more things that I never thought I would be talking about with my almost 7-year-old daughter.

She is very scared about losing Hannah, either by passing away or having Hannah go into the hospital again being very sick.  I told Abby I was scared too.

I know that Abby wanted me to tell her that Hannah was going to be fine and that she would get better, but I was not going to lie to her.  She obviously was more intuitive than I realized about what is happening with her sister.  I also noticed that a lot of discussion was what she heard us talking to the reporter about on Rare Disease Day.

I need to find a way to get more mommy-Abby time for fun and so she can open up.  It is clear that she understands the seriousness of Hannah’s disease much more than we had thought she did.

For the past 3+ months, I have been trying to get Hannah the equipment we need to get her stronger and give her a better quality of life.

After Dr. Raja commented that because Hannah does not have any spasticity, that we can work with her mixed tone issues and work to strengthen her muscles, I decided that we have waited way too long and made this a priority.   I let it go by the wayside because we were so busy with Rare Disease Day events, but I need to get her what she needs.

It has come to the point that I wish we just had the money to pay for it outright instead of having to deal with medical equipment companies, insurance companies, and medicaid.  Ironically, the problem we are having has less to do with Cigna and medicaid directly by getting the appropriate documentation to get things ordered.

Hell, I just found out today that Hannah’s DAFO braces weren’t even preauthorized by our insurance company yet!   She was casted back on 12/9/10!  So friggin’ frustrated!   Also, the stander that we were waiting on and practicing with the trial at her physical therapist was NEVER preauthorized by our insurance company either.   YOU CAN’T FRIGGIN’ PLACE AN ORDER UNTIL THE AUTHORIZATION IS MADE!

So the medical supply company has been sitting on their butts for THREE months without doing a dang thing!    Yes, I am extremely angry.  HUGELY angry.

Our medicaid case manager, who has been incredibly helpful, as well as our Cigna case manager were very specific in what they needed in order to get things moved.   I’m disappointed because I learned not everything will be covered, as we got two denials.   But I am pissed off that no one even started the process on this stuff.

Hannah doesn’t have months to figure this stuff out again.  She needs this equipment NOW!

So I ask to my special needs friends out there — if you have any of this equipment or know of anyone who has any of these and would be willing to part with them, I would gladly pay for shipping!    The braces are custom, so those I will have to fight for to make them move ASAP.

The house that we were looking at earlier in the week and made the offer on is now in escrow!   The bank didn’t go for our 60-day escrow, but they did agree to a 45-degree escrow.

This would give us about 5 weeks between the new house and having to move out of this house.   Probably a good thing with everything going on.

I am very excited to move forward and get a HOME.   We still have to go through the inspection process and everything, so I’m not getting too excited just yet…just in case.

The only bad thing that is upsetting is that the kids will no longer be in Vanderburg’s school zone.  Even though we are just two miles or so away, we are still zoned for another elementary school.   We thought about getting Ethan a voucher so he can finish up his elementary school at Vanderburg and let Abby go to the new school, but we then found out that they even may be different middle schools so we would rather Ethan do his 5th grade with kids he will be going to middle school with (and may possibly be neighbors with).

After everything Vanderburg did for our family, I feel like I am letting them down in a way.  Stupid, I know.  But they just offered to make World Rare Disease Day events a yearly thing, and now here we are moving out of the school.

But then I remind myself that we will finally have a home, have roots, and maybe finally feel settled.   That is priceless.