First ER visit for breath-holding spells

We made it 16 months without a hospital visit since Hannah was born. 

Hannah had these hyperventilation episodes when she gets upset or frustrated.  It doesn’t happen often, although it seems to be happening a bit more now (mostly when we are driving long distances and she gets antsy or when she starts throwing a tantrum).  There were also about 3 episodes where she would start choking on a piece of food (cheerios, goldfish, or vienna sausage), and she would have what seems like a panic attack and stop breathing for about 30 seconds or so even though the food has been dislodged.  During both the hyperventilation episodes as well as the panic attack episodes, we would just hold her and cuddle her, and she would calm down.
 
This afternoon, she started choking on a cheerio while sitting in her high chair (I think).  She started panicking, and she went into another one of her episodes where she starts freaking out and stops breathing and acts as if she is choking.  I wasn’t able to calm her down this time, and a few minutes into it, she started turning blue around the mouth, so we called 911.

It was just me with Abigail and Ethan.  Ethan was freaking out a bit, and Abby just sat there eating her chips almost trying to tune it out.  I felt so horrible for them, even though I was trying to act very calm.  By the time the paramedics and firemen came (a big truck and an ambulance) and it was decided to take Hannah to the ER, I sent the kids over to my neighbor’s house.  Looking back, I probably didn’t handle that the right way, but I was really scared at that point.
 
In the ambulance, her O2 sats were down a bit (I believe between 92 and 95), and she was still acting panicky and trying to catch her breath but also very upset.  The paramedics suggested we take her to the ER with lights and siren to get her checked out.  By the time we got to the hospital, she was calmed down, 02 sats were better, but she was a bit lethargic for about 5 minutes.  She calmed down completely while they gave her a breathing treatment (may or may not have helped) and came back to complete normal a few minutes after that.  Then she fell asleep for almost 3 hours there.  Chest Xray was clear.
 
The paramedic who was in the ambulance with her said it was almost like she was having a seizure, but she wasn’t.
 
Long story short, the ER pediatrician believes she has breath-holding spells with seizure-like activity based on her history and today’s event.  She also believes that because she has the weakened vocal cords and laryngomalacia, it may or may not have exacerbated this.  After reading this Webmd article, this sounds exactly like what we have been seeing for the past few months. 
 
The ER pediatrician put her on an oral steroid for three days because she was concerned about inflammation “just in case.”  Also, she believes Hannah may have croup, but she is not sure.
 
She is back to being completely normal acting now, back to her happy self with normal breathing.

I have absolutely no idea whether or not this is related to her Gaucher’s disease or perhaps it is just exacerbated by it.  Or maybe it isn’t even related at all to it, and it is just another something we have to deal with.

Regardless, because of the severity of what these spells can bring, we have had to prepare ourselves for more 911 calls and ambulance rides to the ER because of it.  We also warned Ethan and Abigail that she has this condition, and it may happen again.  We need to work on an actual plan in case something like this happens again.

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Inlaws, thanksgiving, and future travels

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.

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Just two clicks could make a difference

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)

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Getting ready for “Hannah School”

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.

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She kissed me!!!

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!!!!!

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