Archives for April 2009

Okay, I think I hit that proverbial wall.  You know, when your body is just so tired you just want to be lazy and sleep? 

During Hannah’s 2-hour Cerezyme treatment, I fell asleep for almost an hour of it.  I remember watching TV with her sleeping on me and the drape half-open around our area.   I woke up to a totally different show on the same channel and the drape wrapped completed around our area.  I hope I didn’t snore!  LOL  (Hannah did great at her treatment – slept through all of it!)

Last night I slept for over 5 hours straight.  The monitor didn’t go off once.  Yay!

Tonight, I am giving myself just one more hour to go through emails and get some stuff done and ready for the Chic-Fil-A fundraiser tomorrow.  I have NO idea what to expect or what I am supposed to do.  I am so thankful for my neighbor who set this up and to all my friends and neighbors who have volunteered to help and get the word out. 

36 hours until we leave to visit my folks and extended family in SoCal.  It has been a year since we have been back there, and it will be the first time almost all of them have met Hannah (except my folks who came here right after she was born).

I got a box a few days ago from some friends of ours from New Orleans.  We actually met this couple in Russia, when we were finalizing our adoption for Abby, and they were finalizing their adoption of their son.  They are only a few weeks apart in age.   We have kept in touch over the years, and they brought home a new baby boy into their family right around the time we had Hannah.  Their boys are destined to marry my girls.

Back to the box.  So I opened up the box, and I saw a birthday invitation for their older son and a cute little gift for Hannah.  Attached to the invite was a letter from this couple asking that their friends not give gifts to their son but instead make a donation to help us fight for Hannah.  I cried when I read the letter.  It was beautiful, special, and I was just so moved.  Then, I opened the envelope that came with the package, and it was filled with numerous checks made out to Hannah.  They totalled over $600.  They held their own fundraiser for us.

I started bawling when I saw that.  We have had so many disappointments since we found out what we were dealing with, and this was just so unexpected.  I was overwhelmed that they cared so much for our family that they would do this for us!  I even called Daddy and told him…I think he thought something was wrong at first because I was still crying when I called to tell him!

I don’t have words to explain how wonderful this made me feel in so many different ways.  It wasn’t the money.  It was this incredible gesture, an amazing gift, from a connection that was made over 6000 miles away in a little city in Russia.  It was someone showing how much they believed in us and our fight for Hannah.   It was someone who wanted to do something extraordinary for us, our family,  to help keep us together.

T & M — Thank you, thank you, thank you.  We love you guys too.

Hannah has had a cold for the past 3 days.  Just a runny nose and congestion, but it definitely affects her when she is sleeping.  She has times when she snores for a bit.  But then there are times, like right now, when she is incredibly quiet that I can’t even hear her breath.  (And yes, she is still sleeping in the pack’n’play next to my bed…I haven’t made that move yet to her crib.  I’m working on it.)

Knowing that sleep apnea is one of the symptoms of her disease, I have been incredibly paranoid that she may have it.  I have kept myself awake until almost 3 AM for the past few nights, not intentionally, only because I’ve become obsessed with listening to make sure she is breathing and that she doesn’t have sleep apnea.  I can’t tell you how many times I hear silence, and I get up to put my hand on her chest to feel her breathing.  Sometimes I swear I don’t, but it is so late at night, I feel like my paranoia and exhaustion is wracking my brain.  I admit, I’m not proud of this.

Angelcare Monitor

Today, we went to Babies R Us, and we bought one of those SIDS breathing monitors for the pack’n’play.  You know, the one where if it doesn’t feel any movement in 20 seconds it sets off an alarm.  It is the Angel Care Movement Sensor.  We tested it out tonight since it requires a “firm surface”, and it works great (we layed it on a thin hardback book).

I’m sitting here with the little triangle monitor about a foot away from my head on my nightstand.  Hannah is about three feet away from me.  She was snoring a bit earlier, but she is incredibly quiet right now to the point that I can’t hear her breathing at all.  I’m looking over at the little monitor light, and I see the top light, the one that flickers every 3 seconds to show that it feels movement. 

Since I see the light flashing, I’m not getting up to check on her. 

I hate, hate, hate this paranoia I have fed into because of this disease!  I was NEVER that type of parent before!  

It is like I know that sleep apnea is probably going to be coming soon, and I want it to stay away as long as I can because I know the sooner we get the “next symptom,” the quicker this disease is progressing.  The longer we can keep the next symptom from appearing, the slower this disease will progress, hopefully.

But I need to sleep.  Hopefully this monitor 1 foot from my bed, keeping tabs on my daughter 3 feet from my bed (yes, I know, it is almost ridiculous – if someone told me about another parent who did this, I would have thought overly-paranoid freak as well) will put my mind at ease for now about this.

I have to keep reminding myself, she has an old-fashioned runny nose and congestion.  Just like a normal baby.

Oh well, tomorrow is another Cerezyme treatment, so I’ll be spending the day at the hospital again.

Daddy and I have been going back and forth over this NIH trip.  The main obstacles were 1] Daddy taking off more work, 2] Money, and 3] Ethan and Abby.  We just can’t afford to fly the kids to DC and the additional hotel/food/etc.  I REALLY want Daddy to go to Detroit with me next month for Hannah’s specialized brain scan, because I just don’t feel as comfortable being alone with Hannah in that situation (whereas the NIH, I know my aunt and uncle live there).

So we decided that it is just going to be me and Hannah at the NIH this trip.  I talked to my uncle (who apparently lives just a block away from the NIH!), and they will pick me up from the airport and basically be there for me during the whole trip.  It was very exciting to hear how willing they are to do this. 

This will work out just great now 🙂  Even Daddy feels much more relieved knowing that we can save those extra personal days for later in the year if we need them!  Now to set up a date!