Archives for June 2011

Tomorrow is our final assessment meeting with the school district.   It is the psychological evaluation, and well, I really think it is just going to be me talking about Hannah again with Hannah just being her cute adorable self.

I have been starting the conversations with quite a few important people this past week about what we need to do to get the school district to consider allowing us to have a one-on-one nurse for Hannah in the school next fall.   There just HAS to be a way for them to consider this, and I am not going to give up searching for answers until there is nobody left to ask.

Daddy and I really feel strongly that Hannah could definitely benefit from the stimulation and socialization being in a classroom setting would bring.  She loves hearing music and being sung to.  She loves listening to stories and having books read to her.   She loves being around kids as they are playing around her.

Having Ethan and Abby at home these past two weeks really showed us a difference in her.   Part of her amazing positive progression these past couple of weeks I partly attribute to the kids because they are getting her motivate to move and to interact.

Being at home with a nurse during the day, doing the same things, must get boring for her too.   God knows I would be bored!

I also don’t want to be naive either.   I honestly don’t know what happens in a special ed early education class.  Maybe I have these visions that just aren’t reality?   I mean, I picture busyness, circle time, colorful room, singing songs, colors, etc., for 4 days a week, 2-1/2 hours a day.  If this is what it is, she would really thrive with that kind of stimulation for a couple of hours a day.   I even like the idea of perhaps keeping her out of school during flu season because she is prone to trachiitis but be able to be in classes otherwise — but at least give her that opportunity!

But safety is of number one importance.  I just don’t see how the school district can justify not having a one-on-one nurse for a trached child.   Forget the emergency aspect of it all (which is my big concern) — how does a teacher or assistant know how to suction a trach?  How would they deal with extra secretions?   A trach is an airway, and it is not as simple as just having anyone do it.

I am not going to give up on trying to give Hannah the best time possible while she is still with us.  Other people may write her off “on paper” for being medically fragile, but if her Daddy and I feel she is safe enough to go to school WITH a one-on-one nurse (whom we will provide at no cost to the school district), then that should say something.   And then, if it turns out that Hannah really doesn’t enjoy the atmosphere, then we will change everything back to home.

What I would really love to do is to be able to talk to one of the teachers who teach kids like Hannah here in the school district and get their opinions, insights, and experience on working with kids like Hannah.

I want to make the right decision for Hannah.  I know, that goes without saying.  But I don’t feel it is fair to deprive her of schooling and therapy that would benefit her because she is more fragile than the average child, especially when we would be providing the safety net so the teacher and school would not have to ever worry about that.

So far, the people we have met at the school district working on her evaluations have been really wonderful.   I understand that they are just relaying the rules.  But I just don’t think the rules are taking my child’s best interest into account, and I need the higher ups in the school district to realize that and give her a chance.   I need to collect all my information from her specialists, etc., and show them that giving Hannah at least a CHANCE to try this is what is fair.   If it doesn’t work out, then we all move on to home-based schooling and therapy.

I know many people will disagree with me, and well, unless they really know Hannah like we do, then all I have to say is that you have to trust us that we are making a decision that we feel is best for Hannah.

And yes, even if we do get her to school with one-on-one nursing, I will still be waiting outside the school the entire time.   What can I say, I’m a mom!

We spent this evening at my in-laws house hanging out in the backyard, enjoying the warm and beautiful weather.

I’m not sure how the conversation with Abby started about going to school so you can learn to live on your own, but this is the just of how it went.

Abigail:  “So, Hannah is going to school so she can learn to live on her own?”

Me:  “No, Hannah will always live with us because she needs to be taken care of.”

Abigail:  “But you are going to die some day.  What is going to happen to her?”

Me:   “Good question.  Will you take care of her?”

Abigail:    “Yes, yes!”   (pauses for few seconds, then with a very sincere look)  “Can you write down a list of things I need to do so I don’t forget?”

It was so cute because she was serious and really thought about it.   When she asked me to write the list, we all just started laughing because it was so dang adorable.

You know, I bet Abby would take care of Hannah in a heartbeat — even with Abby at only 7 years old.

 

We had noticed for the past five or six months that Hannah’s mobility and balance had significantly deteriorated to the point where she could no longer crawl, sit, or even roll over onto her stomach (or back).

We chalked it up to the progression of the disease.    She was spending a lot of time lying on the floor on her back or sitting in our laps.

Then we started decreasing the Klonopin about a month or so ago, and then this week some amazing things started happening.

A week ago, she rolled onto her stomach by herself.  We thought it was a fluke, an awesome fluke, but we didn’t put much hope into it.

Then she started doing it a bit more each day, just a few days ago she must have done it five or six times that day.

Two days ago, we noticed that she was actually propping herself up in her high chair, sitting straight up, while watching her Wiggles at dinner.  (We keep her at the table with us at dinner, leaning back in her high chair and watches her iPad).   These past few months, she would just lay back in the chair and watch.  But she did this three times that night!

Yesterday, she started rolling onto her stomach at least a dozen or so times and with ease.  I mean, with not anywhere near as much effort as a few days ago.   Her nurse even told me that she saw Hannah roll onto her stomach and prop herself up on her knees and then sit.  I was like, “yeah, right” and didn’t think much of it.

Then last night, as Abby, Ethan, and I were watching our evening shows and playing with Hannah, she was lying on her tummy while Abby was reading her a book.  Sure enough, she pushed herself onto her knees and into a sitting position.   Ethan, Abby, and I got so excited and were congratulating her and making an exciting big deal out of it because, let’s face it, this was HUGE!   (Daddy was asleep already but Abby was so excited she woke him up!).

Fast forward to tonight.    After the kids went to bad, Daddy and I hung out with Hannah in the family room where “her area” is.   (We have a foam mat covered by blankets where she hangs out).  She rolled from her tummy to back, scooted in different directions on her back with her feet, and rolled onto her back again for at least 30 minutes!   She must have done at least 20 or so complete rolls on her own and went the entire 10 ft x 6 ft area of hers!

As for her balance, she is even able to sit assisted (leaning her hands in front of her on something) and not fall over immediately.  Between this and her ability to sit up straight in her high chair means her balance is definitely improving too.

We don’t know what it is… maybe the decrease in Klonopin is giving her more confidence because her balance and control is better?  Maybe she had really just been feeling so crappy these past six months and is now feeling better?   Combination of both?

I don’t care what it is.  I’m just so glad to see Hannah taking the initiative to move around and get more control of her balance.   I don’t know how far this improvement will go, but I will take whatever we get.

The kids have been home for almost two weeks already, and so far, so good.

I was really looking forward to the kids being home this summer so they could spend more time with Hannah.   Daddy and I felt it would be good for them since she is still very receptive to them and reacts to them being and playing with her.

What I didn’t expect was how much Hannah has gotten out of having her big brother and sister home.   Because the kids are spending more time with her, she is eating it up!   When she hears her sister talking on the side of the room, she will actually roll over to that side to try and see her.   It is so cute!

Ethan has spent time reading her books and giving her lots of kisses.

But the biggest change is Abby.   When Hannah is sitting in the bean bag chair watching TV, Abby is right there lying next to her holding her hand.   Abby  likes to help suction Hannah’s trach, and she is so incredibly attentive and talkative to her now.  If Hannah is sitting with a new nurse, Abby goes over very often to talk to Hannah, almost as if she knows that Hannah needs family love with a new face (nurse).

When the kids spent the night at my in-laws last Saturday, you can tell that Hannah actually missed them!    Daddy and I both commented how she seems more bored when they aren’t around and doesn’t smile as much.

When school was in session, they didn’t really spend a lot of time with Hannah.  Maybe a few minutes after school with quick kisses or a quick book, and then hanging out as a family after dinner before bed.   The kids really only had quality time with her on the weekends, and Abby and Ethan really weren’t as into it as they are this summer.

Having school out now and having the kids home is such a great thing for Hannah and the kids.  I love seeing Hannah smile and really make an effort to be present with her brother and sister.   And I love seeing Ethan and Abby really go out of their way and WANT to spend so much time with Hannah now.

We took Hannah to her GI doctor today.   Just a follow up, as her stomach issues have been pretty under control for the most part.

As he was asking me questions, we did uncover that she has been getting more constipated lately (sometimes going 2 or 3 days between poops) and that her reflux seems to be a bit worse.   Also, she has been getting a lot more gassy than usual, even using the mylicon a couple of times a day (still on the infant dose).

He believes that she is having neuromuscular progression in her motility, getting the food through her body.   It is still a mild problem at this point since it hasn’t caused any real harm, so he wants us to start using 1/2 capful of Miralax every day to help keep her body moving.   Also, we added simethicone (same as Gas-X or mylicon) to her diet 4 times a day to help her with the gas.

She is now 29.5 pounds.  She has been hovering around the 28 to 29 pound mark for almost 5 months now.   She hasn’t been gaining as much, but he wants us to wait until her next appointment in 4 months to see if we need to up her calories or change her formula.

Really, it was not a big deal, nothing major.   But for some reason, it made me a bit sad.   Her tummy issues were the one area that we didn’t have any issues at all, and I kind of enjoyed having those appointments were all is good.