Archives for February 2009

Tonight while I was downstairs, my hubby told me to come upstairs because Hannah looked blotchy.  Of course I ran up the stairs to check.

Sure enough, her face was really blotchy, especially on her upper eyelids, and her eyes were watering like crazy.  She was acting like she wasn’t feeling that great.  Twenty minutes earlier, she was laughin and being herself.  Also, when I picked her up under her arms, I felt a slight vibration when she would breathe.

Usually, I would wait and ride it out for at least a few hours or the next morning before making it a concern.

Not tonight.  I immediately called Dr. B’s after hours line, and it turned out that he was on call tonight (out of 8 doctors, talk about luck!).  Of course, the answering service wanted to hook me up with the night nurse first, but I told them it would be a waste, and I needed Dr. B. directly.  It couldn’t have been more than 2 minutes after I hung up with the answering service that Dr. B. called. 

We went over what her symptoms were, asked me if I heard any wheezing or stridor in her breathing (we didn’t).  He thought it could be an allergic reaction to something, so he wanted us to give her a 1/2 teaspoon of benadryl to see if that would make a difference. 

Sure enough, 30 minutes after taking the Benadryl, she was sleeping comfortably and her face was back to normal.  It must have been a reaction to something.  But what?

I know I totally over-reacted, but I guess that is my new way of parenting with Hannah.  I just had in the back of my mind that swallowing issues are one of the next neurological symptoms to look for, and one of those symptoms are watering eyes from having trouble swallowing. 

Nope, not related to Gaucher’s Disease at all.  Just “normal” baby stuff.  So why do I still worry?

My new Houston Examiner.com Special Needs Article…
Please take a moment to click on the link above to read the entry there.  The more page views I have, the more chance I have of becoming featured on their main pages!  But since this is Hannah’s story, I want the article here too.

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Even though Hannah is only 6 months old, I feel that the life that I knew before we knew she was ill has been gone for a much longer time.  Things that I enjoyed before Hannah was here (such as certain television shows, projects, etc.), I find very little interest in these days.  I would rather spend that time with different activities, mostly ones relating to creating awareness and finding a treatment for my daughter’s disease before it takes her away from us in a few years.

I have made a very conscious effort towards making sure our family life is as normal as it can be for our kids.  They know Hannah is sick.  They know she has a lot of doctor’s appointments.  They know that she gets her “medicine” (Cerezyme enzyme replacement therapy) every other week down at Texas Children’s Hospital.  But they don’t know the extent of her illness and what Hannah’s prognosis is.  To our kids, Hannah is just the baby sister who loves laughing when they make funny faces and loves to sit on their laps.

I have this rule that I do not do “Hannah stuff” when our two older kids are home.  It would be so incredibly easy to become completely obsessed with my new advocacy mission and work on it every waking moment if I could because there is still so much that I want to do. 

Yesterday afternoon before my husband got home from work, the three kids and I were downstairs playing Wii Disney Sing-It Karaoke for almost two hours.  Hannah sat on my lap and watched as her brother and sister were playing the role of a rock star with the hip-hop moves and everything.  I even sang a couple of songs! 

It was all smiles during that time.  No thoughts of a little girl with a fatal disease.  No thoughts of a boy with ADHD.  No thoughts of money struggles.  Just fun, pure family fun.   After it was over, I realized how important these moments are for us.  These are the memories that I want my kids to have.  Heck, these are the memories that I want to remember! 

I need reminders like these more often.  I will not give up on working to save my daughter’s life, but I will also not give up on the fun family times that were the reasons that my husband and I worked so hard to create a family in the first place.   It is a balancing act that I am not yet experienced in, but in time, I know we will find the right balance.

I never really considered myself a paranoid parent or even an overprotective parent before. 

But last night I realized that I have become totally paranoid when it comes to Hannah, especially when she is sleeping.  She is a noisy sleeper.  You can hear her breathing loudly at times, as she sometimes even wakes herself up from sleep.  She sleeps with her eyes open a little bit (like in this picture), which honestly, is a bit freaky (like she is doing now!). 

She woke up at 3:30 AM this morning with a little cough, just a little too much saliva or something in her throat.  It only lasted a couple of seconds.  But it freaked me out a bit, as swallowing difficulties is one of the big symptoms to look out for with her. 

She’s still sleeping in the pack’n’play in our bedroom.  I wake up a few times a night for whatever reason just to make sure I still hear her breathing.  As much as I know we need to move her to her crib, I’m just so paranoid that something might happen.  What is ridiculous is that her room is literally right next door to ours, and we do have the monitors. 

So why am I so afraid to let her go?  I got to get over this.