Archives for July 2011

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.