Archives for January 2011

Hannah seems to be doing even better today than yesterday.   Even though her movement disorder is still pretty significant when compared to a few weeks ago, her personality is definitely coming back.   Today she was playing with her iPad, reading books with her nurse and I at her little desk, and she actually crawled four or five feet to play with her toys.  She is a lot more engaging today than she was just a few days ago.

Such a huge relief!

Hannah always keeps us on our toes.  There is rarely any relax time around her, at least for me.  I’m always mentally prepared for something to happen unexpectedly… she pulls her trach out or she falls backwards or she throws up.  Something.  When I am away from Hannah in another room, I always am on edge waiting for Daddy to yell, “Honey, get in here.  She pulled her trach out!”   Even now that she has decannulated herself twice with both her nurses to the point of turning blue, I also have that in my head “just in case.”

Maybe that is why I always feel the most comfortable when I am lying or sitting right next to her.  Even if she is just playing on the floor, being right there were I can see her hands or keep tabs on her balance actually makes me relax more.  Weird, I know.

I’ve said it a hundred times already, but you know what makes it all worth it?  Her smile.  That gorgeous, infectious, heart melting smile.

I will do whatever it takes to keep her safe.  So if it means more mental preparation and being a little on the edge all the time instead of total shock and fear when something happens, so be it!  Maybe I’m a freak in that respect, I don’t know how other parents of medically fragile kids do it.   But it works for me.  I always would rather be somewhat prepared than be totally taken off guard.

I don’t even know if “spatial security” is a real term or not, but it is the best way to describe Hannah’s actions right now.

Hannah was a bit better today.  She was more willing to play with her toys, and she would even crawl/scoot a couple of feet at times.   She seemed to both me and her nurse to be in much better spirits.   I can’t tell you how great it was to go downstairs this afternoon and see Hannah smile as soon as I said her name!

Today’s nurse is the one we have had since we first brought Hannah home from the hospital back in June.  She and Hannah are a perfect match for each other, and I know how much Hannah adores her and how much she adores Hannah.    She remembers when she first met Hannah, and Hannah was so much like a newborn that she couldn’t even roll over or suck her pacifier.

We talked a lot about Hannah’s condition today.  The marked increase in her movement disorder.   Her increase in stiffening up her entire body when you go to move her or pick her up.  Her even stronger need for physical support, etc.

She believes that Hannah has lost a lot of spacial security.   After researching it online tonight, it seems a medical term similar to this is called “Developmental Dyspraxia.”  It fits her situation perfectly.

She always wants to be physically….enveloped, I guess you can say.  She always had some sense of it, but it seems to have increased 100-fold in the past week or so.  She stiffens up if she doesn’t feel that security to the point where she becomes like a dead-weight board.    We have even had to put a pillow behind her little wooden chair this week because of it — she was using it without a problem last week.

When we go to pick Hannah up, she will stiffen up so tightly until she feels that complete security where it is okay to release.   There were times today that even though I held her tightly and securely, she still wouldn’t relax.   Before, she will relax once she is in your arms.

Her nurses and I are doing a lot more PT type of exercises and massages with her to try and loosen those muscles.  I can’t imagine how much it would hurt having your whole body clenched up like that so often.

I noticed tonight, as she was lying in bed with me (as she still will only go to sleep as long as she is cuddled with someone), I noticed that she would not let me cuddle her leaning against the pillow.  She pulled me down so that she was lying completely on the pillow, and I had her wrapped up in my arms.  Almost like a swaddle.

Perhaps this markedly increased spatial insecurity is brought on by her increased movement disorder.  She is trying to hard to control her body now, especially her hands and face, that she is just getting wiped out.  It has even reached the point where she can’t grab her paci and put it in her mouth anymore.  (Even if we put it in her hands, she can’t get it in her mouth.)  At least when she is “enveloped,” she doesn’t have to work as hard at obtaining that security because we are providing it to her.

Tuesday’s appointment with the neuro cannot come soon enough.  I hate the fact there are no pediatric movement disorder specialists her in Vegas!  I tried the single adult specialist, but he will not see Hannah.

Sucks, sucks, sucks.

Last night, Daddy and I had one of our reality discussions about Hannah that we have to have but just sucks that we have to have.  We have both seen the deterioration in her condition, especially over the past month.  How much of it is chalked up to being sick with trachiitis and strep plus being on the amoxicillin and cipro for the past two weeks plays into this is still a question, however.

When I came down this morning, Hannah’s nurse commented to me that she thinks that Hannah’s movement disorder has gotten much worse just in the past few days.   Today is especially worrisome.  She doesn’t crawl more than a foot or so, and she has to really want something for her to even go that foot.  She will slowly go one step, go back to her W sit to balance herself, and then she will try for another foot.

For the first time, she didn’t crawl to me this morning.  She just cried until I picked her up.  I was only three feet away.

Her hands and face are constantly moving now.  She has gone back to holding her hands together so that they don’t keep moving.  I wouldn’t say it is as bad as it first was in the hospital this summer, but on a scale of 1 to 10, 10 being severe, I would say we went from a 3 to a 7 in just a few weeks.

Hannah’s next neuro appointment wasn’t until February 18th.  I called this afternoon, and the earliest Dr. Brown can see her is next Tuesday.   Today is the last day of the cipro, and we only have two more days of the amoxicillin.  She will be antiobiotic-free for a few days before that appointment.

Playing with her toys and at her desk is what Hannah does every single day.  She loves to play.  Not right now.

It is so hard to see her body working so hard against her that all she wants to do is be held.

Yep, she did it again this afternoon while her nurse was changing her trach ties.  She yanked her trach out again, panicked, and started turning blue again.   Thank goodness we had the oxygen this time because we were able to force oxygen in her lungs while she was having her breath-holding spell.   Her nurse couldn’t get the 3.5 back in so she put in the smaller 3.0 size.    We kept the oxygen on her for a few minutes afterwards while she caught her breath and regained her color.  THIS is the reason we needed the oxygen!!

Her nurse and I both tried to switch out the 3.0 with her normal 3.5 later this afternoon.   No luck.   With her trachiitis and strep along with all the bloody secretions from the trach scratching her throat, she was in pain, clenched up, and we just couldn’t get the 3.5 in.

So here I sit, waiting for Daddy to get home from a work event.  My stomach is in knots knowing that we have to try and get the 3.5 in again tonight.  Knowing that she is going to have another breath-holding spell because she is upset, panicky because of the pain, whatever.  Knowing that because her throat is still so sore and raw that is not going to be a very easy task… not even sure if we will succeed tonight.  Ugh…

Guess who turns 2-1/2 years old today  🙂   I feel like it is another milestone reached, you know?

There is this little song that I made up to sing for Hannah that she just absolutely loves.  I sing it many times a day, especially in those cuddling moments where it is just her and I lying together.  Even though she may not be able to speak or share words, I can tell how much she loves it by the smile on her face and by the expression in her eyes.

I love Hannah, yes I do,
I love Hannah, it is true.
I love Hannah in every way,
I love Hannah every day.

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above –”
This special child will need much love.

“Her progress may be very slow,
“Accomplishment she may not show.
“And she’ll require extra care”
From the folks she meets down there.

“She may not run or laugh or play,
“Her thoughts may seem quite far away.
“So many times she will be labeled”
‘different,’ ‘helpless’ and disabled.”

So, let’s be careful where she’s sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.”

They will not realize right away”
The leading role they are asked to play.
“But with this child sent from above”
Comes stronger faith, and richer love.

“And soon they’ll know the privilege given”
In caring for their gift from heaven.
“Their precious charge, so meek and mild”
“Is heaven’s very special child.”

Thanks Addy’s Mom for sharing this and tagging me on it.  Our girls definitely are so much more special than anyone could reality, and it is truly a gift to be able to be Hannah’s mom.