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Happy 5th Birthday Ally Pally!  (ok, it is really tomorrow, but we celebrated yesterday)

Yesterday was quite a day for Ally Pally!  She started off with chemo in the morning.  Her ANC counts were down (she’s moderately neutropenic now), so she was only able to get a half dose of chemo.  We’re keeping our finger crossed that her counts don’t continue to go down.  If they do, she has a greater chance of getting sick.  If her counts drop below 500, she is what they call severly neutropenic, and that means she is at severe risk for bacterial infection (back to the no fresh fruit/nothing that has touched soil and hasn’t been cooked/limited and controlled contact with people).  She goes into the hospital on Friday for a spinal tap and a big chemo treatment.  We’ll see what her counts are then and go from there. - Aside from all that, her treatment went fine.

We celebrated Ally’s fifth birthday yesterday with a party. She was a bit tired at first.  She wasn’t exactly interested in opening her gifts at first.  Once she started though, she was so excited.  She was thrilled with each and every gift, literally.  Once everyone left, she opened every game she got and played it.  Her baby got dressed up in her new outfit and got to try out the new highchair.

As exciting as Saturday was, Ally paid the price today.  She was whipped.  If I didn’t know any better, I would have sworn she was on dex  (the lovely mood-altering steroid)! Dex is coming later this week, by the way.  I was worried.  She was just so “on and off” crabby, and she would NOT take a nap for anything!  I’m always worried it is something more than her just being tired, you know.  (Having that fear in the back of your mind all the time isn’t fun.  I try not to think negatively and remain positive, but it’s hard…I can’t help it.  Any time she slips and falls down - which isn’t often, but still - my heart skips a beat.  I then watch her like a hawk to make sure she’s not limping…the original sign that lead us to the leukemia diagnosis.)

Tomorrow is Ally’s actual birthday.  Birthdays are always special, but this one is even more so.  That little girl has been through so much since her last birthday.  When I think back and see how far we’ve come and what she’s endured, I am amazed and thankful that I’ve been blessed to be the mommy of such a special young lady.  Happy Birthday baby girl!!  Mommy and Daddy love you more than you know.

Ally and Benjamin are doing very well.  We had a wonderful Thanksgiving last week, and I got up all the Christmas decorations, including the tree.  Both kids have been doing very well with it.  Actually, Allyson is the one who touches it the most.  She has her own ornaments on the tree, so she loves to look for them and take them off from time to time.  Sometimes I find her carrying one around or sitting with one in her hand. - I have yet to set up our manger scene.  I think I’m going to have to put it on the fireplace mantel so baby Jesus does make his way into the baby crib of Allyson’s dollhouse.

This past weekend we went to two Christmas parties on Sunday.  We didn’t know how long we’d last because Ally Pally was a bit tired.  Friends of Kids with Cancer held their annual holiday party at St. John’s.  We went, but lasted maybe ten minutes.  It was soooo crowded and loud, Allyson couldn’t handle it.  (You know, when you tell people who have kids with Down syndrome that, they don’t blink an eye because they understand.  Many kids with DS tend to have sensory issues, especially with sound and noise; the problem is real and not something we can make her “get over”.  We are hoping that in time, she’ll learn to cope with the noise.  Until then, she does what she can.)  Ally and Ben got to see a reindeer.  Benjamin actually went into the party for a little bit.  (We, Ben and I, basically crammed our way in the door and walked around a bit.)   For one brief moment, he got to sit on Santa’s lap.  He wasn’t too sure about it, but he did it.  He was all about talking to Mrs. Claus though ;-). — So, that party wasn’t a success, so we were off to the Down Syndrome Association bowling/holiday party.  Ally didn’t last long there either.  She really didn’t want to bowl…she was tired.  Benjamin was happy to sit and eat snacks.

We found out Ally has to have another spinal tap and big dose of chemo next week on Friday.  This is the one where she’s admitted to the hospital…we thought she’d have that treatment every three months, but she has to go in and have it done every two months.  She also has to begin a week of Dex ( yes, the lovely steroid from hell that make her hungry constantly and quite a bit moody) the day before the big treatment.

Trying to plan a trip to New Orleans around Ally’s chemo schedule was a bit challenging, but we did it.   We’ll be down less than a week, but that is the best we could do.  Thankfully, Dr. Rob was able to adjust when she begins the steroid just a bit so she won’t be on it while we’re driving to New Orleans.  I can’t imagine being in a van for ten hours with a constantly hungry and more than slightly crabby Allyson.  (God only knows how Benjamin is going to travel for that long.  He tends to get C-R-A-N-K-Y when he’s tired and when he gets too frustrated.)

Ally’s b-day party is this Saturday.  I can’t believe she’s going to be FIVE!!