Archives for February 2011

I got a call this morning from Fox 5 Las Vegas.   They want me to come in tomorrow morning for an in-studio interview!

Of course, I was half-awake when she was giving me the information, but all I know is that we have to be there at 7 am for an 8:45 am taping.    Not sure if it is live or to be pre-recorded.  I do believe it has to do with the big school event tomorrow.

I have to thank my friend, Jen, for this one.  She contacted a friend of hers who used to work there and got the ball rolling.  I talked to their assignment desk manager yesterday and shared the information, but I wasn’t sure if it would go anywhere beyond that.  It did!

Unfortunately Hannah still has the stomach bug, likely a virus, and has not been herself today.  I’m hoping that she is well enough to go tomorrow.  After all, this is because of her and her beautiful smile!

I am so thrilled to get the opportunity to share why World Rare Disease Day is so important to our family.   We get a chance to share Hannah’s story in hopes that the public realizes that she deserves as much chance for a treatment or cure as any other child fighting a common disease.   In the rare disease community, hope is so much harder to have because there is very little “on the horizon,”  particularly with neuronopathic Gaucher’s disease.

Ethan and Abby are excited to be able to go to the news station in the morning.  They will be missing a couple of hours of school at the most, but I don’t want them sheltered from this either.

Later on that day – the big school beading and ribbon coloring event!   Huge, huge day tomorrow — all inspired by my amazing little girl and that gorgeous smile.

We need help to try and save her life.  Hopefully this will a huge step forward in trying to find that needle in the haystack that will keep Hannah with us longer and keep our family together.

Midnight on the dot.

I have spent the last 20 minutes or so cleaning smelly diarrhea off Hannah and after that, my mattress.  It was time to change the sheets on our bed anyway, and I wasn’t a huge fan of the pajamas she was wearing.    This is the second time in the past 2 hours Hannah has had smelly, explosive diarrhea.

Hannah obviously isn’t feeling well.    We had the vomiting episode yesterday, only once.  But today, her nurse says that she just wasn’t her playful self and wanted just to be held all morning.  It wasn’t until her second nap in the afternoon that she started feeling better and being a bit more playful.

Tonight, after her first evening feed at around 10 pm of about 60 mL,  she started getting really uncomfortable.  Tossing and turning, her face was starting to be very stressed.  I noticed her stomach really big and firm.   About 20 minutes after that feed, she had her first explosive let-go.

I hadn’t fed her anymore this evening.  Usually, I feed her about 2 oz every hour at night for 4 hours (plus about 4 oz water over the course of 8 hours overnight).

About 11:30 pm, she was still awake and obviously very uncomfortable.   She was throwing herself from side to side, and the tears started to well up in her eyes.  Her stomach was still very round and rigid, so I thought that maybe she was bloated with gas.   So I took her feeding tube with an empty syringe to try and vent her out, which is letting out the gas via the tube while I rubbed her stomach.   Some gas came out (sounds like a bubbling geyser), but her stomach was still taut.  I tried massaging her stomach, bicycling her legs, whatever I thought would help relieve her uncomfortableness.

Then I heard the huge gurgles in her abdomen, and well, you can imagine the rest.

She is asleep now, 12:15 am, finally.  Her stomach is much softer now but still looks a bit bloated.  She seems much more comfortable.

I’m worried about what is causing this.  Being that she is on the same formula g-tube diet, I’m leaning towards some type of virus.  But what is most concerning is the disgusting, unique smell… I can’t remember what her rotovirus smelled like (that put her in the hospital for 4 days this summer), but it definitely has an nasty odor.

I think I am going to call her pediatrician tomorrow and see if they can do a blood test for rotovirus, c-diff, and whatever other severe viruses she could have caught.  If anything, just to rule them out.

Tonight, no more food.  Just lots of water.   Also going to pick up some probiotic yogurt to feed her via gtube or maybe get a prescription for FloraStor again just to protect her stomach.   I’ll talk to her pediatrician about this tomorrow.

EDITED TO ADD: 12:30 am, and she has started squirming around in pain while she is sleeping.   My poor thing… I’ll go get another change of clothes, diaper, and protective sheet just in case!

Hannah threw up today.  It has been quite a few weeks since she has actually vomited, which has been wonderful.  But was is really disturbing to me is that she did it while she was asleep during her nap.   She didn’t even wake up when she did it!  Her nurse was sitting right next to her while she was sleeping, and as soon as she noticed her mucousy secretions pouring through her pacifier, she turned Hannah on her side where she finished vomiting.

Thank goodness the nurse was right there because she could have choked or aspirated (gone into her lungs).   Hannah didn’t even wake up until her nurse jostled her enough while she was taking off her shirt (it was soaked) and was getting ready to give her a much-needed sponge bath.

That really scared me.  Just the concept that it happened.  Of course the first place I went was the internet, and I found a few possible explanations that could cause it including increased reflux and seizures.   My gut is telling me that perhaps her reflux is getting worse and her Prevacid is just not cutting it anymore.  I hope it is not more seizures, but that could be a possibility too (but she was fine after).   And as my friend Patty said to me, perhaps it was just a one-time thing that happens to normal children?

On a separate note, I’m having a hard time getting my pediatrician to get a rush referral to the new (third) neuro.   They say they faxed it, the neuro’s office says they never got it.   Tomorrow, I’m going to call and get them to fax it to me first.

As much as I dread the idea, I really think Hannah needs to have a sleep study done and/or a 24-hour EEG so we really can get a good handle on her seizure disorder and deal with anything else that may come up (apnea, desats, etc.).   Even though she is twitching less while she sleeps since we increased her Keppra, she still does it on occasion.

I really don’t want there to be any surprise findings, but I really think at this point I need to get peace of mind one way or another so we can keep her safer while she sleeps.

We are just four days away from Ethan and Abigail’s school campaign in recognition of World Rare Disease Day!

The principal has gone above and beyond anything I could have ever hoped for with this campaign.   Not only are the entire staff and student body encouraged to wear denim jeans that day (for Jeans for Genes Day), but all 450+ third through fifth graders will be making bracelets for the 7000 Bracelets for Hope project.  These bracelets will be attached to cards where each student will share a message to another child who is fighting a rare disease.   The K thru second graders will be coloring jeans ribbon printables and sharing messages of hope.

What blows me away is that she has not only dedicated an entire hour of school for this project, but she did it during a week of very important state testing.  It is so heartwarming to know that Hannah, Ethan, Abigail, and the other families who are living in situations such as ours deserve a chance to share our story and create awareness.

We have also been working to get the media out to this event.   Either print, television, or both.   Nothing has been finalized yet, but I’m keeping my fingers crossed.

The flyers for this event started being distributed to the students in the school last Friday.  From what I have been told, teachers aren’t just passing it out, but they are taking the time to explain why we are celebrating “Jeans for Genes Day.”

Daddy and I have been very careful to keep tabs on how this all effects Ethan and Abby.  Everyone in the school will now know our family situation, and that is a lot of responsibility for kids their age.  Ethan is incredibly excited and hopes to be on TV.   Abby is a bit more reserved, but I really don’t think she really gets what is going on.

Between the planning of this school event and the fundraiser on Monday, 2/28, at Hannah’s clinic, Hannah has dominated most of the conversations in this house, moreso than usual.  As much as I love putting this all together, I know that come March 1st, I need to take a step back and put our collective family of 5 back on the main focus.  It isn’t that I won’t do more events in the future, but we can space them out more.

World Rare Disease Day comes only once a year.   Those involved with these two events truly know how important this day is to us.

But now I must get off the computer and get back to cutting elastic string.  String for 450 students to create beaded bracelets is not going to cut themselves (but gosh I wish it would!)