After getting back from a wonderful week-long vacation away from Gaucher’s disease, therapies, and the stresses of researching to find who is working on understanding Hannah’s condition, I came home to read about little Maddie Spohr.   My heart is breaking for Heather, Mike, and their families and friends.

Be at Peace, Maddie.   Please take a moment to share your support.

It is kind of surreal being back in the house that I grew up with from the time I was 5 until the time I left for college (and for a brief stint after the Northridge earthquake of ’94 after I lost my apartment).  Even though I haven’t been here in one year, it always feels like I have never left, and you go right back into that same routine.

Our visit so far has been a good one, with the expected hiccups along the way.  Ethan broke his glasses two days before we were to leave, but he didn’t tell us until I just happened to notice the tape on the side during the fundraiser the night before.  So, we were able to go to a one-day place, and we bought him a new pair of glasses here.  

Abigail was really cute last night at the Seder.  I think she developed a little crush on my 20-year-old cousin.  She would not leave him alone!  It was adorable.  She even said that he was “cuter” than her “boyfriend” in preschool.  Where does a 5-year-old pick up on this stuff?

Hannah hasn’t been herself yet.  I miss my happy-little-baby.  I think the combination of having a cold, an ear infection, jet lag, many new people in three days, and not being at home in her routine has gotten to her.  With the exception of me and Daddy (and our kids), she just doesn’t want anyone to hold her or even play with her unless we are around.  I think she has cried more in the past three days than she has since she was born!

Today is a mellow day, which is good.  I have to run to the store to pick up an outfit for the easter egg hunt at my parent’s golf club for tomorrow.  I knew there was a dress code, and I got everything for the kids, but I totally forgot to bring something for me.  I guess jeans are a no-no there. 

I have been neglecting my emails, on purpose, as I am trying to not be so focused on “my mission.”  But I do wish I could spend at least an hour or so just reading everything that has come in!

We had the fundraiser at Chic-Fil-A tonight.  I honestly did not have any clue what to expect.  Ethan, Hannah, and I got there at about 4:45 PM, as it started at 5 PM.  My friend and neighbor, Christy, met me there, and kept us company and “worked the wheel” (donate a dollar, win a prize) for the first hour.  It started off slow, but then around 5:45 PM, things started to pick up. 

By 6:00 PMish, it was a completely packed restaurant with at least 1/2 the people coming in carrying the pink or white flyer that was distributed!  It was PACKED!  We had friends come to support us, at least 1/3 of our street showed up, Ethan’s teacher was there, and Hannah’s developmental therapist even showed up!  I also met so many wonderful people who received the flyer from a friend who came to introduce themselves. 

It stayed completely packed until we left at 7:00 PMish.  We never ended up eating there, so we went through the drive through on the way home.  We didn’t stay until the end at 8 PM because Hannah was started to get really tired and a bit stressed out with all the people and chaos.  (She did great though considering how many people she saw that gave her hugs and love!).

It was a huge success in my eyes.  HUGE!  I don’t know how much money was raised, maybe a couple hundred dollars.  But the amount of people that turned up just to support us was the biggest success.  It must have been at least 50 or so families that came to be there for us because they wanted to be there for Hannah.

I do have pictures to share, but we are leaving for Los Angeles in 7 hours, and I better try and get some sleep!!!

What I thought was going to be a simple 5-minute well-check for Abigail turned out to be a bit more complicated.

Abigail’s ears still look “miserable,” which I knew, so we will likely be having a third tube surgery some time soon.  Also, he wants us to get Abigail an abdominal xray when we get back because he thinks she may have encopresis.  It all fits, as she has been complaining about “hard poopies” for the past few weeks and she has had some accidents, even just minutes after we ask her if she needs to go potty.  So we may be adding some Miralax to her diet.

Our pediatrician also did a quick physical check on Hannah and noticed that she is starting to develop fluid behind her ears again.  If this turns into a full-blown ear infection, that will be what, the second one in as many months?  She has had a runny nose for the past few days, and if it continues for a couple more days or if she gets a fever or tugs at her ears, he gave us a prescription for antibiotics that we can use while we are in CA.  He checked out her spleen and liver, but for the first time, she was pretty uncooperative, as she wasn’t feeling very good.  I didn’t get the impression there was any change in the size, however.

So, in the middle of all Hannah’s multitude of tests, we have to add Abigail’s ear tube surgery plus her abdominal xray to this mix.  Boy, our insurance company is going to be busy for the next couple of months with u!

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.