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.

 

Since Hannah is going to be turning THREE years old in a few weeks (end of July), she is going to be aging out of Early Intervention services.   I cannot believe how much time has flown!

Now the decision has come whether or not to put her into school or have her schooled at home this fall.

If we put her into school (hoping it is the same one as Ethan or Abby or very close), it would be 4 days a week for 2-1/2 hours a day.   She would get socialization and stimulation, which is all we would really want for her.   She loves music, singing, having books read to her, and just being around other kids (especially her siblings and cousins).   She would also get PT, speech, and OT during this time.

If we keep her out of school and have the school district school her at home, I think it would be something like a couple of hours a week.   PT, Speech, and OT would also come, but not as often as they would if she was in school.

The MAJOR problem is that they won’t allow us a one-on-one nurse or someone one-on-one for Hannah.   This is so close to being the deal breaker for us.   What if she pulls her trach out?   Having a nurse “on campus” is not going to be helpful when you are dealing with a child who loses their airway — what if the nurse is with another child?  Heck, what if the nurse is in the bathroom?    Not only that, but what if she gets really upset, especially being in a place where she doesn’t know anyone, and she gets upset, which leads to her breath-holding spells, then becoming hypoxic which may lead to another tonic-clonic seizure or possibly even a stroke?   If there is no one there she feels comfortable with to calm her down, what then?

The only way she can get one-on-one nursing is if she is on a vent.   I don’t want to have to have Hannah’s condition deteriorate to get the type of care that we feel she should have.   After talking to some people at the school district, she will be one of the more medically fragile kids they have had – but not by any means the most medically fragile.

I really want her to have that socialization and stimulation that being in school would bring her.  We know she isn’t going to get a traditional education, and reality is, she doesn’t have the development or capacity for anything more than what a 12-month old can learn.  But she does love interaction, loves trying to color, and we know she would thrive with that stimulation.

Daddy thinks we should try the school setting first and then we can always bring her home.  If we do decide to do that, I can assure you that I will be sitting right outside that school’s front door WITH the teacher and administration knowing I am there in case something happens.  But I just feel like I shouldn’t have to wait outside for 2-1/2 hours each day because she isn’t getting the type of looking after she needs.

I don’t know.  I REALLY don’t know what to do.

Hannah and I are well on the way to fully recovering from her trachiitis and my viral meningitis/exhaustion.   I’m feeling better than I have in months.  It helps that I make a point to get at least 6 hours of sleep at one time instead of 2 or 3 2-3 hour naps.

Hannah too is feeling much better.  She is more alert, happy, and just full of smiles.   She is starting to roll over again (back to front), which is a skill we thought she had lost because she hadn’t been able to do it in months.   She even tried to get onto her knees from her stomach, although the effort failed.  But at least there was intention and an attempt!

The kids got out of school today, so it is officially summer break.

Last summer was just horrible.  We moved from Texas to Vegas.  Hannah and I were in Texas until the end of June, and Hannah didn’t get out of the hospital until middle of July last year.  At that point on, it was all about Hannah’s recovery.

This summer, Daddy and I have decided to focus on being a family, doing things as a family, and just keeping it low key.   Hannah may not be able to do many of the things we plan to do, but there are quite a few that she can go with us to such as the children’s museum, the Bellagio hotel fountains, night at the park movies, and things like that.  We want this to be the summer that the three kids have fun together, as much fun as possible anyway.   We also want the kids to have fun with us, mommy and daddy, I we have actually set up a daily schedule that blocks out playtime with me so we can play games, go to the movies, bake cookies, etc.

We don’t know what next summer holds for our family, but we aren’t going to dwell on it anymore.   Hannah is here now, so we are going to do what we can together.

I just want this summer to be fun.   Family fun.  And as long as Hannah is still full of smiles, we are on the right track!