I started the process last November of last year to get Hannah an appointment with Dr. Sanger down at Children’s Hospital Los Angeles.   He is one of the leading pediatric movement disorder neurologists in the country, and from what I have researched, he is very into research new ways to control movement disorders.

It wasn’t until I asked Dr. Goker-Alpan, Hannah’s NIH pediatrician, for help that we finally got an appointment…and an urgent one at that!   AUGUST 10th!   So it looks like we are going to head out to Southern California for a few days next month.

I’m really, really looking forward to having Hannah meet with him.   I’m really hoping that maybe he can give some ideas as to how to better control Hannah’s movement disorder – maybe different meds or something else – and to work with our local neurologist to implement his ideas.

I’m not getting my hopes up.   I don’t want to set myself up for answers because I know that Hannah just doesn’t play by any textbook.   But at least we are moving forward and trying.  Daddy and I will do whatever we can to give Hannah the best quality of life.  I’m hoping that Dr. Sanger will be able to help us with that.

It was so important for me to have Hannah see fireworks this year.   Even though it was all about “me,” I wanted her to experience them.  I needed her to experience them.

Last year on July 4th, she was in the hospital.   Her 7th of 8 weeks in a row in the hospital last summer.    Daddy stayed in the hospital with her that night so I could have some fun with Ethan and Abby since I had only been in Vegas for a few days at that point.

Last year, I remember sitting with Abby watching my brother-in-law set off fireworks in the street, watching my kids and their cousins “ooh” and “wow,” wondering what “next year” is going to be like.   Wondering if Hannah will still be here.   Yearning and wishing that she was with me at that moment so she could see the excitement and beauty of the sparks, colors, and sounds.

So we went over to my brother-in-law and sister-in-law’s house tonight to have our 2nd annual fireworks fun.   It was already 8 pm by the time we got there, and you could tell Hannah was already getting tired from the day (and from just getting her meds).   But that didn’t stop her.

At first she was not interested in what was going on plus it was hot, but then she started hearing the sounds and caught glimpses of the lighted sparks.   She turned her body around and sat on Daddy’s lap facing the fireworks!

When I saw her watching the fireworks, my heart just swelled.  I kept thinking to myself “Yeah, baby!  You are here!  All my kids are here and it is a wonderful night!”   It really meant so much to me to have her with us, enjoying a fun holiday, and being a part of it.

Hannah ended up falling asleep about 30 minutes before we were done so Daddy had taken her inside to cool down while the cousins and my kids continue to play with their poppers and watch the fireworks from all the neighbors.

I love seeing my kids play with their cousins, and I love the fact the cousins are getting to know Hannah.  She doesn’t get to participate in much and isn’t around when they spend the day or night at their grandparents (Hannah is only there if we are), so I really cherish these times that all six of them are together and they recognize Hannah as part of the family.

Happy 4th of July, baby!

We had our follow up with the pulmonologist yesterday.

Even though we were supposed to follow up after 4 months, it ended up being 6 months since we had seen him.   The day before I ended up in the hospital was the day of her appointment, and I just wasn’t up to it (now I know why).

It had been one year since she had been trached.  We discussed what needed to be discussed.   We went through all her procedures (like her humified trach collar at night, not using an HME because she coughs out 99% of her secretions, etc).  He commented on how great her trach stoma (hole) looks, and how well she seems to be doing pulmologically.   Really, we just had the two bouts of trachiitis since we had seen him last and that was about it.

We didn’t talk about trach decannulation, but the truth is, I didn’t bother bringing it up because I just don’t feel he knows enough about Gaucher’s to really make a good judgement call on this.  Hopefully Dr. Roy’s Nevada license will come through soon so he can help us with that decision (I know it is already in the works).

He took a trach aspirate just to see if there is anything growing that we don’t know about (which he does at every visit).

When I asked him when he would like to see her again, I was sort of taken aback when he said “6 to 12 months.”  Wow, really?   I mean, it makes sense, but since pulmonology issues are so common with Gaucher kids (respiratory distress, pneumonia, etc.), I just expected him to say “3 or 4 months” again.

It was really a great feeling knowing that, at least pulmonologically, she is considered stable at this point.

We had our final meeting with the school district this week in order to prepare for the upcoming IEP meeting which will determine what services Hannah will get when the school district takes over.

After talking to one of the heads of the nursing staff there, they are now saying they will provide a nurse in the classroom.   However, if there is a child that needs a G-tube feeding or something, they would bring the child into Hannah’s room and the nurse would do it there.

To us, this is a good compromise that we can work with for now.  There are some factors we want to learn more about such as how many kids in the class will this nurse be monitoring and how many outside kids will need to come in for the nurse’s assistance.   If the number is low on both counts, this is definitely doable.   However, if there are a dozen kids who all need monitoring by the nurse, well, that is another story.

Her doctors still are going to put in writing a one-on-one nursing requirement so we will still work on getting that kind of coverage.

On a side note, one of Hannah’s nurses now (whom she just adores) used to work for an agency that did school nursing in the classroom for kids like Hannah in our school distrct.  She wants to find out what agency it is that is doing it so she can be put on Hannah’s case and go to school with Hannah at least a couple of days a week!   Of course it is a long shot, but it is definitely worth a shot since she has already done it before in the past.

Anyone, nothing is permanent until we get to the IEP meeting on September 1st and put everything into writing on paper.   Daddy and I still have to feel 100% comfortable with whatever arrangement we can agree upon in order to let her go to school.  But at least things are going in the right direction now.

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.