Verdigets.com

quick updates…Happy New Year everyone!

Well, we had a nice time in New Orleans.  Brad got to see his MaMaw and PaPaw again, and Benjamin got to meet more of Brad’s family.  Benjamin took right to PaPaw.  It was so cute.  They played and played.  Benjamin giggled and giggled!  MaMaw said that is the best PaPaw has been in quite some time.

Ally ended up getting sick on the way home and got worse the first day back.  New Year’s day she wouldn’t eat or drink anything.  We called Dr. Bob to see if keeping her home was the right thing to do (we had an appointment the next day).  He did not want her in the ER because of all the horrible stuff going around this city.  As long as she was urinating  and didn’t spike a fever, she was ok until the next day.  - Well, when we go to the office the next morning, she was dehydrated.  She got a five hour IV fluid drip.  Lucky us, we were also sent home with an IV backpack again (those of you that follow this blog will know this is NOT our favorite thing) for fluids.  THe doc wanted to make sure Ally didn’t dehydrate again.  - Back at the docs on Saturday morning.  She was OK to get chemo.

New news…During one of the routine tests they run on Ally, they found her body is not producing enough antibodies to fight infection.  To make a long story short, she needs to begin an IV treatment this Friday to help boost her antibodies.  This is a good thing, but unfortunately, this will be an on-going treatment every three to four weeks throughout her chemo treatment.  Chemo is scheduled to end August of 2010.  Since that is the beginning of flu season, the doc want to keep her on it through that winter season.  This means she’ll be on this IVIg treatment until spring of 2011.  (We know this is going to be the best thing for her health, but we did not want to hear we’d have to extend treatment…yuck!) - Anyway, this new infusion takes 6 hours, (yes, I said 6 hours) the first time.  They infuse slowly so they can monitor her reaction to it.  After this first infusion, the others should take something like 3 hours every time she gets it.  Let’s keep our fingers crossed for no reaction!

Both kids have coughs and runny noses.  Benjamin is fairing very well.  Ally always has a cough for quite some time when she gets one.

Brad and I are back to work this week.

Well, we arrived in New Orleans in true Verdigets style.  (Come on…you know there’s a story!)

We eneded up stopping in Memphis for the night.  Ally was just plain tired, so we thought it best to stop and get a hotel room.  We woke up in the morning, bright and early, and had breakfast.  The car was re-packed, and we were ready to go by 8:15 in the morning.  Brad turned the ignition, and the check engine light came on.  He read the manual…ok to keep going unless it starts to blink again.  If it stays on, that’s ok.  Don’t drive on it if it blinks…We moved maybe 50 feet, and it started to blink.  To make a long story short, Brad called the closest Mazda dealer (27 miles away) and a tow truck.  He left with the two truck, and I went back to to the hotel room with the kids - for 7 and 1/2 hours!  Thank GOD for the DVD and the few games I had brought with us.

Once the car was fixed, we were back on the road by 4:00 in the afternoon.  We made it to New Orleans about 9:30 at night.  The kids were so tired.  Benjamin freaked a bit.  He’d never been there…had just woken up because he’d fallen asleep…he’d never seen Brad’s brother and his family, ever - they were there…All in all, they were good.  Benjamin finally went to sleep between Brad and I.

What a difference a year makes!

Merry Christmas everyone!  Christmas morning was definitely different this year.  Benjamin was first down the stairs.  He was so excited to see Santa brought him a basketball hoop.  “I play basketball!”  he says…very cute.  Ally wasn’t 100% interested at first (she’s been on Dex, that steroid), but when Benjamin started in on his gifts, she perked up and opened hers.  It was cute to watch them both open their gifts.  They were genuinely excited about each one they opened.

We had breakfast and let the kids play with their stuff while I packed the car.  Brad and I decided to leave for New Orleans Christmas afternoon.  We thought we’d drive through to Memphis and see how the kids felt.  If they were really tired, we’d stop and push on the next day.  If we thought we could make it all the way, we’d keep going.

Left for New Orleans about 2:00 in the afternoon…

(One year ago Christmas day, Ally began limping on her left leg.  Little did we know at the time that leukemia had ravaged her body and that it was the cause of her limp. )

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!!