Archives for November 2009

My inlaws have come down to visit us for the Thanksgiving holiday weekend.   It has been a wonderful visit so far.  Abigail and Ethan have loved it most of all because they have been spending all their time with their grandparents.   It has been SO good for them to be able to get away from the house and be pampered and focused on, including spending each night at the hotel with them (swimming, playing tennis, playing board games, doing nails — well, Abby anyway!).    We even got a chance to get our Christmas and Hannukah shopping done this morning with my hubby and father-in-law hitting Wal-mart Black Friday at 5 am today, and my hubby and me hitting Toys R Us later that day (with Hannah).

It has also been a great opportunity for them to get to know Hannah because it has been almost a half year since they have seen her last.   Even though Hannah has been incredibly shy with them (as she is with everyone), they have gone out of their way to interact with her, spend time with her, and just play with her.  

A few weeks ago, my husband’s brother and sister-in-law and their two kids came to visit us as well (they couldn’t do thanksgiving with because of work schedules).   My nephew is 7, and my niece is just 9 months old.   I loved watching all the kids playing with each other, and I loved being able to share Halloween with them.   Just having my sister-in-law’s company was a refreshing change, even if it was just hanging out sometimes and watching the chaos that our kids created together.

Tonight my hubby and I talked about travel plans for next year.  We have the NIH visit in January.  But when it comes to being able to fly out to see them, we just have no clue where we will be in a few months’ time with Hannah’s health. 

I’m already nervous about flying to DC for the NIH due to her recent hyperventilation and choking/panic spells that are becoming more frequent (a few times a month now).     We are planning to see how well she does going to DC, and that will determine if we take any future unnecessary airline trips in the future.    Sadly, I keep thinking that her health today is “as good as it is going to get.”

One step at a time.

Would you give just two “clicks” of your time to help Hannah?  Chase Financial institution is giving away $25,000 to charities based on the number of votes they get.  

When you have such a rare disease like nGD, you don’t have the support (financially and people-wise) that the bigger causes do.  Here is our chance to get a real piece of support financially and in terms of people learning about nGD.  Do you have any idea what $25,000 would do towards research and support for Hannah and the other kids with neuronopathic Gaucher’s disease?  It would be a HUGE start!!

Please just take a moment, two clicks of your time, and vote to give us a chance at this huge gift?  (And please tell your friends)

Ever since Hannah’s yearly DAYC evaluation, I’ve felt very defeated in terms of her progress.  Especially in the cognitive and communications areas, which really did not advance at all in the past 4 months. 

I keep asking myself that with all this therapy, why was there not an advancement in this area?

So when I went to last week’s OT session, I told our OT that I don’t want to work on feeding issues for a while since we have made huge strides in that area, and I want to work on her cognitive, fine motor, and other skills. 

She brought out a chunky knob puzzle with farm animals on it, and we spent half the time using the puzzle both as a fine motor skill workout and as a chance to learn animals and animal sounds.  It was completely over Hannah’s head, but she liked looking at the pictures. 

A lightbulb went off in my head at that moment.

Because Hannah doesn’t have the ability to imitate naturally and because she has to be taught EVERYTHING and doesn’t learn on instinct for the most part, she has only learned exactly what she has been taught.  She has done well with that so far even if it takes months just to learn one concept.  At least she is learning!

I’ve been in a rut with her because I wasn’t really sure what to do with her, so we would play with her toys a lot (cause/effect, etc.).  But it has been the same toys over and over again.  She hasn’t really minded, but I knew that I had to do something new.

So I decided that I’m going to take my “dream” of being a teacher (even though I’m just one semester shy of my certification), and I’m going to put Hannah into “Hannah school.”  I found a couple good websites on activities for young toddlers, what they should be learning, and the different areas that a normal daycare would work on at this age.

I’ve put together a very comprehensive list of activities in each of these areas as well as other ideas.   I went to the 99-cent store yesterday with Abby, and we bought a ton of things to use in our “school” that were on my list.   We then came home and reorganized our living room (which is Hannah’s playspace), brought down a little cabinet, and we stocked our supplies for school.

My next plan of action is to come up with my December monthly goals for Hannah.  Taking into consideration that her acquisition of learning is very slow, I’m going to be very realistic in what I hope to accomplish in that first month (I will post it here when I do it). 

After my monthly goals are set up, I’m going to come up with a weekly “lesson plan” of activities that I want to focus on when we are at home, each working towards a monthly goal.   I am not going to go overboard because she does have other appointments and therapies, so again, I’m going to be very realistic.

This is going to be a “family” project because I can get Abby involved in many of the projects after school when she is interested (which will help get her more involved), and since my hubby will be working from home come mid-December, he is excited about taking some time during the day to be involved (even if it is just for 15 or 20 minutes to work on one of the “lessons.”)  Ethan thinks it will be fun, but he is really indifferent about the whole thing except I know that he loves playing with Hannah.

I’m very excited about this whole thing.  Even though she has five to six therapies a week, I’m starting to feel that they really don’t get into the heart of what she needs.   Once a week for 45 minutes on a concept is not going to help her teach, even though I do try and reinforce what we learned that week.  So I’m going to utilize the therapy time to help learn from the therapists more about what we can do and pick their brains to really reinforce what they do with other projects. 

Honestly, I hope some day to feel confident enough to maybe cut back on some of her therapy visits each week, even go bi-weekly.  But I’m not there yet, not even close.

Bottom line though is Hannah.  As long as she enjoys her “Hannah school,” we will do it.  Once it becomes too much for her, then we cut back, stop, or whatever.   I just want her to progress and have fun doing it.

Hannah now responds to a new request!!!  When we say “Kisses,” she brings her face forward and puts her face on ours.  Then we give her a kiss.  OMG!!!  How awesome is that, seriously!!!   She even does it with Ethan and Abigail now, and they just eat it up!! 

My baby girl kissed me on request, again and again!!!!!

As I have said for quite a while, it has been a really crappy few months here.  But there is finally some light shining for us…

My husband just got a new job!  Actually, it is the same company, but it is a different division.  Instead of having to drive to downtown Houston every day, leaving at 7:30 am and returning 7:30 pm each night, he will be WORKING FROM HOME!  Yes, can you believe it?!  This new position in an exciting new division is going to allow him to telecommute!

I’m probably more excited than he is.  I finally get a chance to breathe!  I can run an errand without having to worry about Hannah.  Take a long shower in the morning.  Even take 20 minutes to myself during the day!   I can take walks outside without having to worry about her getting bit by mosquitos or being too cold/hot.  I can take some time and start doing my Wii Fit that I have had for almost a year and never had time to really get into!  I don’t have to cut my day short or rush home to be home in time for Ethan and Abigail’s school bus.

Not only that, but the company that bought my old employer agreed to hire me back.  Unfortunately, the pay is less than what I was making when I went on maternity leave, but it is better than nothing.  I’ll be working Saturday and Sunday, 6 AM to 2 PM, plus Tuesday and Thursday  night from 8 PM to 11 PM. 

I’m already sad about having to work every weekend, but at least I will be working and bringing in an income. 

But with my hubby being home every day, things are going to be so much less stressful.  He is so excited to be able to spend more time with the kids, attend school functions, and even go to a few of Hannah’s therapies (because his hours are flexible).  We can eat dinner at a normal time instead of right before the kids go to bed.

It will be a big adjustment, but it is definitely worth it.  And once we get the respite care going (still waiting on our MDCP caseworker unfortunately), we may have even more of a sense of new-normalcy in our lives!

We had our yearly review of goals and IFSP (Individualized Family Service Plan) with our Early Intervention team this week.  I have been dreading it because I hate what it represents…the quantitive evaluation of my daughter and her delays.   Informally, we do it every 4 months to continue to monitor her progress.  Normally, they do it every 6 months with a review of services at the yearly evaluation.

Since her last evaluation at 12 months old:

Cognitive Age Equivalent – 11 months
(at 12-month assessment, she was assessed at 10-month level

Communication Age Equivalent – 8 months
(at 12-month assessment, she was assessed at 8-month level)

Social-Emotional Age Equivalent – 14 months
(at 12-month assessment, she was assessed at 14-month level)

Physical Age Equivalent – 8 months
(at 12-month assessment, she was assessed at 8-month level)

Adaptive Behavior Age Equivalent – 14 months
(at 12-month assessment, she was assessed at 9-month level)

Good news:  Thanks to her newfound ability to hold a bottle (even though we have to place her hands in the right place) and the fact she is eating a few finger foods, her adaptive behavior has jumped up quite a bit!

Bad news:  Social and communication remained unchanged in the past 4 months.  Cognitive only went up slightly, one point.  Physical score stayed the same as four months ago, but I know that is only because they have to stop the test because she doesn’t crawl yet.  I don’t take that to heart because I know she has made leaps in physical therapy in the past few months.

I’ve been starting to question the amount of therapy Hannah is set up for.  After hearing from other parents of nGD kids and other children with special needs as well as Dr. Goker-Alpan from the NIH, the general consensus is that *I* need to come up with what I feel is best for Hannah and our family without becoming a burden to our family.   That at some point, I can’t let this disease run our lives, but on the other hand, she really has made such great progress despite her DAYC scores.

Today was her first day of hydrotherapy, and she LOVED it.  I swear, it was better than any PT session we ever had.  She tried so hard to walk, and because her muscle weakness (hypotonia) wasn’t an issue, she was just jumping around everywhere.  She did fantastic!   We worked on crawling on the top step, walking, and cruising around the handrails.  She kicked her feet while on her stomach while chasing little fish in the pool.  It was absolutely amazing.

Therapy has so many benefits.  Because of her hypotonia, hydrotherapy is a definite must.  Definite, definite, definite. 

Physical therapy once a week is also a must, as is occupational therapy once a week (usually twice a week but hydro is taking one of the spots).  I talked to her OT (who also is the one doing the hydrotherapy), and I told her I want to start focusing less on feeding issues and more on cognitive and other life skills.  So Wednesday during OT, we worked with those chunky puzzles with animal pieces and worked on animal sounds and matching.  She loves the stimulation regardless of whether or not she gets it.

We also have developmental therapy once a week, but that is more for our entire wellbeing as a family with Hannah.  Our therapist is like a family member, and she works with Hannah on whatever Hannah is up for.  She is also one of the few people that Hannah will go to willingly, so keeping that weekly appointment is a must.

Vision therapy.  We start that next week.  That remains to be seen if it will be helpful.  At least that, like developmental therapy, is at our house so that is a comfortable atmosphere for Hannah.  I’m going to talk to our PT about bringing her care to the house as well since she does Home Health services as well.  OT would be our only hospital visits unless I could get that to the house in the future as well.

There seem to be no guidelines for this.  After talking to one of her therapists, most children have a traumatic injury or chronic illness, and then they work from that point to improve their quality of life and learn life skills.  With Hannah, we are in a constant battle with the neurodegenerative brain decline of this disease, and I just have no idea when the tables are going to turn. 

Right now, we are still making great progress.  Slow, but still progress.   We are still a step ahead of this disease.