Archives for December 2009

One of the gift’s of keeping a journal like this is being able to go back in time and see what you were thinking and feeling like at Hannah’s first Christmas.

There were just a few times during the past few days that I think about what we have in store for us in the next few weeks. It scares me to death. I just have absolutely no clue what to expect. No clue what direction we will be going in. Argh!! Just thinking about it now is pissing me off.

At that time, the leading diagnosis possibility was Niemann Pick type C, but we really had no clue what we were dealing with or what we would be in store for.   Heck, we weren’t even sure, given the list of their leading possibilities, that Hannah would even have a second Christmas!  Wow, how far we have come in one year — not only is she still here, she is doing really well despite her challenges!

Santa and Hannah’s grandparents bought Hannah lots of great toys including a toy piano, Fisher Price Learn and Grow farm,  ride-on-me Mickey Mouse, some soft blocks and soft balls/rings, and more.   Even though she couldn’t open the toys on her own, her big brother and big sister loved helping her out.

It was a great, great day.  Last year, I couldn’t enjoy the day because of the “unknown.”  I do admit now that now that I know, it was much easier to enjoy the day!

Here are some pictures…

This afternoon was tough for me.  We got home from our failed road trip, and I felt very mopey and defeated for the few hours after that.   All I kept thinking is, how the heck are we going to get her to the nursing home in order to fulfill this requirement for the MDCP (Texas’ medically dependent children’s program).  We NEED to get her on this program because it will open up so many services to us.

We were thinking — fly and rent a car?  Expensive…. rent an RV and road trip again?  Still have seat belt laws… bus?   Why aren’t there more MDCP-approved nursing homes?

Then I reconnected with a mom that I met at occupation therapy a few times (our kids actually share the same OT, pediatrician, and GI doc).  She told me that she was able to complete her son’s nursing home stay in a home closer to us than the one near Waco.   I didn’t see it on our list that our case manager gave me, so I am going to call tomorrow to see if it is a possibility for us.

If this is a possibility for us, there is hope!  We can handle Hannah and a 45-minute to an hour drive instead of a 4+ hour drive.    Pleas,e please, please let this be an option for us.

We are back home already.  Three hours after we first left to head to the nursing home.

We only made it 50 miles (1/4 of the way there), and Hannah had already had four hyperventilation episodes by that point.  There was just no consoling her in her car seat, so we had to stop, take her out of her car seat, and get her to calm down enough to put her back in.  The fourth time, we were on the highway, and I ended up just taking her out of the carseat while we were driving and holding her in my lap in the middle seat.  Of course, we drove right by a highway patrol car, but thankfully he didn’t see us.  We made it to the offramp right after that.

While sitting on the offramp, we decided that we weren’t just not going to make it in time.   Hannah was miserable — on top of her having tantrums for being uncomfortable in the car, she was congested, and she was teething.  Just miserable.  Even watching the Wiggles and Mickey Mouse on DVD was a futile attempt at this point.

I called the nursing home to cancel, and I told them we would reschedule.   I ended up taking out the benadryl that we brought “just in case,” and I gave her 1/4 teaspoon just to see if we could knock her out for a little bit so we could make it back home, another 50-mile drive.  It worked like a charm for about 30 minutes while she slept.  She woke up from her quick nap, and she had another tantrum about 20 minutes from our house.  Stopped in a parking lot, took her out of the car, calmed her down, and we put her back in, and she watched the Wiggles all the way home.

I swear, once she saw our house, she had the biggest grin and excitement.  Daddy and I looked at each other like, “Are you kidding me?”  I mean HUGE smile.   As soon as we got her out of the car and in the house, she was just a happy camper.  She started playing with her toys, smiling, and just being calm and happy.

So friggin’ weird.  We know these hyperventilation episodes are usually caused by her having a tantrum.  But in her case, she can’t control how her body reacts when she is having one.  They seem to trigger either her vocal cord weakness and/or laryngomalacia and cause these episodes.  Of course, once she starts hyperventilating, it takes her quite a while to catch her breath.

I don’t know what our options are at this point.  We have to get this nursing home visit done so we can get on the MDCP program and get Hannah the services she needs.   Fly and rent a car?   Rent an RV, but I think there may be restraint laws for an RV as well, not sure.  I have no friggin’ clue.

But we are home.  She is a happy camper again.

In about 15 minutes we head out for our road trip to the nursing home.  By map, it is only a 4-hour drive.  But since we will be making numerous planned (and hopefully no unplanned) stops, it will probably be more like 6 hours.

Right now, my stomach is in knots.  Not as much because Hannah and I have to spend the night in a nursing home (with Ethan, Abigail, and Daddy in a nearby hotel), but because I’m terrified as to how Hannah is going to handle this drive to the nursing home and back home.  If last week’s excursion to/from Dallas is any indicator, it is going to be rough.

It is going to be even tougher this time because Hannah now has a cold.  Just congestion, no fever.  But because of her congestion, she wakes up in a panic attack when, we think, the drainage clogs her throat.  Last night, she had a gagging attack after she woke up from a panic, and we ended up using the home oxygen concentrator.  We got her calmed down from the gagging attack in about 5 minutes, and she never turned blue.  But she had a tough recovery for the next couple of hours, as it took that long for her to finally catch her breath completely.  For a while there, I was contemplating another 911 call.

As we pack right now, Daddy is making sure the oxygen setup is all ready in the car.  I think we are bringing a few of the little ones with us.  Yesterday, I went and bought pediatric oxygen masks and tubing (I guess last night was a practice with it!).

Please, please, please send good thoughts that this trip is uneventful.   For those on facebook, I will be posting status updates on there many times during our trip to let you know how we are.

For the past couple of days, I had been feeling a bit down with everything, especially since we had such a rough travel to and from Dallas.  Knowing we have to make an even longer road trip in a few days to the nursing home (4-1/2 hours each way) to satisfy Hannah’s MDCP requirement so we can get medicaid and respite care is really stressing me out.

Then when I least expect it, Hannah pulls off another milestone.

Hannah crawled today.  Not once, but she did it three times!   The farthest she went was about six feet!   And not a commando crawl — a real on-all-fours crawl!  It was amazing.  I ended up calling our whole family into the living room to watch her do it.  I had to immediately text my sister-in-law and her favorite ECI therapist to let them know LOL.   I wanted to cry with happiness because this is just something that her PT and I had just written off her short-term goals at the last meeting after being on there for 6 months.  She was tired afterwards, but because we were all cheering her on, she had the biggest grin.

To understand how difficult a feat this is with her hypotonia, just imagine trying to crawl with 100 pounds of weights on your thighs.  The strength you need to coordinate and move your knees and thighs is immense.  This is how hard it is for Hannah to accomplish this.   This is such a huge thing for her to overcome.

This made everything good again.  This was such a wonderful gift she gave me.  She’s no where near done trying to progress, so I feel this is her reminder to me that I should never worry about where we are at, as she is taking her time on getting to where she wants to be.

At 16 months, she finally crawled.  My baby girl finally crawled.   She is absolutely amazing.  Thank you for my wonderful holiday gift, my dear beautiful little girl.