Archives for October 2009

Time to deal with Cardiology and Hannah’s ASD

13 Oct by Mommy

Tomorrow we start Hannah’s workup for her atrial septal defect (hole in the heart) that was discovered when we were at the National Institutes of Health in July.  It “most likely” has nothing to do with her Gaucher’s Disease, but we need to deal with it anyway. 

She is having a sedated echocardiogram tomorrow morning. 

I’m very anxious about it.  I know it is “just” oral sedation, but how the heck are they going to get her to swallow it?  This is my control freak daughter here, who rarely even lets me put a syringe in her mouth for other medicine!

Then, I’m hoping, hoping, hoping that the ASD resolved on its own in the past three months.  Everything I have read says that unless the ASD is pretty serious, it can be monitored for the first few years of life to see if it will close on its own. 

So Tuesday AM is the sedated echocardiogram and Wednesday AM is the consultation with the cardiologist to find out what the echocardiogram shows.

I’m hoping it is already closed so we can not worry about this and file this diagnosis away!

~ Filed Under: Hannah's Fight

A huge (and messy) step forward!

9 Oct by Mommy
I wish this phone pic came in clearer!
I wish this phone pic came in clearer!

Hannah has been making such quick and huge strides in terms of her eating issues recently.  Actually, it has been progressing over the past few weeks, but tonight was a huge leap forward.

We still have made very little progress in the feeding-by-spoon issue after all of these months.  She just almost refuses to let us feed her by spoon.  When she does “allow” it, it is always mixed with fruit, and it always has been a stage-2 texture.  If we tried a stage-3 texture, she would spit out the pieces immediately, cry, and sometimes throw a tantrum.

That being said…

In OT today, we progressed to full-size graham crackers and oreo straw sticks.  These were the same oreo straw sticks that she choked on pretty badly about 6 weeks ago.  She has easily mastered goldfish within just a week.   Her OT was beaming when she saw how easy Hannah is handling these foods.  Hannah seems to “learned the skills” needed to gum mashable foods!

Her OT and I were discussing the spoon issue, and she said that it is possible that Hannah is such a “control freak” that she won’t ever let us feed her by spoon.   She may go straight to feeding herself instead of us feeding her. 

So she wanted me to do a “test” tonight.   So I emptied a jar of stage-3 spaghetti and sauce into a baby bowl, and I put in on her high-chair tray.  I put a baby spoon, a baby fork, biter biscuit, and a air-wheel on the tray after I dipped them into the spaghetti bowl. 

Sure enough, she was totally into eating the stage-3 food, bits and all!  What was even more amazing is that on a few occasions, she even dipped her spoon and biter biscuit into the bowl of food to get more on it!  She TOTALLY understood the concept of using a utensil!!   For a half-hour or so, she totally got into it, eating all of the biter biscuit soaked with the spaghetti and sauce as well as playing with the utensils, etc. 

Bottom line, she can easily handle stage-3 foods!  As long as SHE puts it in her mouth.  And she is now beginning to understand the concept of using utensils because SHE took the initiative on three separate occasions to attempt to dunk what she was holding into the food bowl to get more. 

In the end, she ate about 1/3rd of a jar if you put it all together.  But for a first real attempt at a stage-3 meal, she did absolutely incredible.  Much, much better than we could have ever hoped!

So now we are starting to rethink this whole feeding issue.   Yes, we still have definite delays on feeding, but she is making amazing progress on this.  So much so that our OT wants us to try refried beans, mashed potatoes, and mushy rice next (as long as she feeds herself).  With two teeth, she is managing really well with her “toddler” finger foods.   Even though we are still going to continue to attempt feeding with a spoon, we are going to put less emphasis on pushing it, and if we have to keep with a bottle to get her nutrition in her in the meantime, then we will. 

We will just keep pushing forward with getting her to feed herself.   She is a control freak when it comes to feeding, for whatever reason.  But now that we know she can physically do it, we will just follow her lead and see what she will eat next!

My heart is just soaring tonight. 

~ Filed Under: Hannah's Fight

Guilt and Moving On

8 Oct by Mommy

I haven’t been posting as much recently because things have started to calm down a bit, and we are finding ourselves getting into more of a routine with everything.

Hannah is now at 5 therapies a week (PT, OT x2, Dev therapy, and vision). We are still working on getting the speech pathology consultation. She is making great progress in physical therapy, meeting 2 of her 9 long-term goals and 3 of her 5 short-term one-month goals. OT, well, we are slowly making progress as well, adding goldfish to her list of munchies. Still having incredible sensory issues with spoon feeding, so we are still on stage-2 type foods unless they are snack-type foods she feels comfortable gumming on.

Since little Ethan M. and Niamh have passed away, I find myself feeling very sad and even guilty at times. This disease is just so overwhelming emotionally. Hannah is still here, and she is, for the most part, stable in most aspects. I’m so thankful for this, but the “when” is still hanging over my head. I feel guilty because Hannah is still here, at 14 months, and beautiful little children like Niamh and Joseph were hit so hard and taken so early from their families.

It just constantly reminds me that this disease needs more awareness, more research, more funding, etc., but it seems that very, very little is being done in the way of this. I admit that I have had to take a step back from my intensive “search for a …” over the past few months because I was becoming overwhelmed and obsessed, having to reprioritize things in my life because my other children and our family dynamic were starting to be affected.

But I need to do something… I just don’t know what to do anymore.

~ Filed Under: Hannah's Fight

Be at Peace, Niamh Lilly Kay Evans

6 Oct by Mommy

Niamh Lilly Kay EvansSweet, beautiful little Niamh lost her battle with Gaucher’s Disease type 2 last week.    She was only 10 months old.   She fought so hard, for every breath, every day of her life.

I met her a few months ago, soon after she was diagnosed.   I felt a real connection with her mom, as she had the same fight and “out-of-the-box” mentality that I do.  She was always looking to see what was out there to see if there was something that could help her Niamh.   She is an amazing mom.

When I asked her mom if she wanted to share something about Niamh,  “what always stood out about Niamh was how she would smile whenever she was shown affection. That she loved music and got really excited if we sang or danced with her. She loved having a massage and a cuddle. She liked to sleep holding on to either dave or my lip. She loved her brother and he would let her play with his hair. when she was struggleing he would stroke her hair. She had a cheeky grin whenever she was able to taste food…particularly chocolate.”

But now this horrible disease has taken another child away.  It is just so not fair.  This beautiful girl deserved a chance at life.

~ Filed Under: Rare Disease
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