2:04 PM
Posted In
gabby
,
leukemia
And her numbers did not improve.
Gabby's doctor just called and said that typically, when neutropenia is caused by a virus, there should be some change by a weeks time. Gabby's neutrophils actually got a bit lower.
We have been referred to a hematologist and are waiting for a call to, hopefully, get her in this week so they can do a bone marrow biopsy. I'm terrified.
3:02 PM
Posted In
gabby
,
leukemia
,
white blood cells
I just let out the HUGEST sigh of relieve ever. Gabby's pediatrician called and said she really isn't concerned about Leukemia at this time. When she said that, I told her "You have no idea how happy I am to hear you say that!" Of course, we still have the issue of why her white blood cell count/neutrophils are so low, but just knowing that as of right now we are NOT thinking about Leukemia makes me downright giddy!
She ordered another blood test to be done next week so we can check the levels. As of right now we are assuming that this is a viral issue that is going to clear up. It's still scary and Gabby can still end up in the hospital if she comes down with a fever so we're being cautious and keeping her home until we can figure out what's going on.
Thank you all for your thoughts, prayers, love and support. I think it worked!
9:13 PM
Posted In
gabby
,
leukemia
,
white blood cells
This morning Gabby had a routine blood draw. I had a bad feeling going in...not sure why. I am pretty sure it had a little something to do with mother's intuition.
As I was getting my nails done this evening, the results were automatically forwarded to my email which my iPhone immediately alerted me of. I sat there reading Gabby's lab results and I began to panic as Ken (the best manicurist around) buffed and polished my fingernails. I think he could tell something was up. I'm fairly certain I started to sweat. I didn't understand the numbers but I could definitely tell something was not right and all I could think about was Leukemia.
Children with Down syndrome have a 1 in 95 chance of developing this devastating disease. This, coupled with the fact that Gabby is ALWAYS sick with some kind of cold, had me on absolute edge.
I came home and immediately called my friend, Jenny, who is in the process of learning ALL about this stuff in med school. She made me feel much better and told me that usually with Leukemia, your white blood cells are very high, while Gabby's were actually quite low. This information didn't completely pacify me but at least I got the "L" word out of my brain for a few minutes. She did say, however, that it was evident that Gabby had Neutrophenia or a low count of neutrophil (cells used to fight off infection in the body)
The new question is/was "WHAT is causing this Neutrophenia?" While I googled my little heart away, I also posted a shout out on Facebook asking if anyone else out there in the Ds community had experienced this. No one had. Google was my only reliable source at the time considering Gabby's doctor had left for the day and no one was available to go over lab results with me. It should be ILLEGAL for abnormal results to be sent to a mother once the pediatrician is no longer available for consult. It was torture but there were many things I was finding including, Hyperspleanism, folic acid and B12 deficiency's, congenital issues with the disease, etc. All of these were MUCH better than the dreaded "L." I was feeling okay about the results until my brother-in-law finally called me back...
He explained that the white blood cells can, in fact, be low in the presence of leukemia. My high was suddenly fading. He didn't sugar coat anything, which I appreciated but basically he said we're concerned with two things: 1.) Sometimes, a viral infection (which are pretty common with the Gabster) can cause a Viral Suppression of white blood cells. This makes a little bit of sense being that Gabby has been battling a little cold for a good part of three or four weeks but it wasn't that bad of a cold, ya know? or 2.) Leukemia.
BAM! Just like that, he said it. I explained my confusion about thinking that the white blood cells had to be elevated with Leukemia but he assured me that wasn't so. However, he did say that typically with Leukemia, other things would be low as well such as her hematocrite and hemoglobin levels (which are not low but are on the lower level of normal.)
So at this point, I am just not sure what to think. I called her pediatrician and left a message with her to call me back as soon as possible and I also sent her an email. She is usually very good about getting back to me so I expect to hear from her tomorrow, for sure.
In the meantime, my brother-in-law informed me that because Gabby's neutrophils are so low, if she were to come down with a fever, we are to take her to emergency immediately. She has basically no defense against infection right now so things can get ugly quickly.
It's currently 1:15am and I am just waiting for her to wake up with a blazing fever. I am so paranoid. I have googled and googled and GOOGLED for the better part of seven hours. A lot of information is pointing to Leukemia and a lot of information is pointing in other directions. I wish her chances of getting this nasty disease weren't so high so I could relax but I guess it's my job as "mom" to freak out, right?
I thought it would be good to blog about this, and keep everyone in the loop. I hate to be all "doom and gloom" but this is what it is and I have to be real. I really REALLY truly hope that this is not Leukemia and we can solve it easily. We could use some positive t's and p's if you've got some.
I will update tomorrow once I hear from her doctor.
10:30 PM
Posted In
disneyland
This is out of place but I forgot to mention it on my last
DL post and it's super important for those of you with children with
Ds or any other special needs. I had heard from a couple of friends that I could obtain this Guest Assistance Card due to Gabby having Down syndrome and so I capitalized on it.
The pass basically acts as a "SUPER FAST pass" and saved us many hours of waiting in long lines. All I had to do was take Gabby with me to Disneyland's Town Hall where they asked me how many were in my party and simply handed me the pass. It was that easy. No questions asked and it was a life saver! We either got right to the front of the line or waited five minutes TOPS for all rides. It was awesome!
Back to the original content of this post...
Day two at the park was dedicated to tackling California Adventure but first up was another breakfast with the Characters. Gabby absolutely adored Daisy Duck!
I was so impressed with the Characters. Many of them knew basic sign language and it was so cute to see them using it with Gabalicious.
"love"
"Look Mom! It's Daisy Duck...can you believe it?!"
Cameron had a cough that wouldn't quit on this particular morning so he really wasn't feeling too hot when I took this but he mustered up a smile.
And then look who showed up!!
But no one was ever more excited than this guys when Stitch came over to say hello.
Check out that cheeser!
Gabby wasn't too fond of this "creature" and she made sure to tell him so.
Almost done with breakfast but first...
And one last photo op with our favorite pup:
Finally we made it to the park and the first awesome thing we came upon were two of Cam's favorite characters, straight outta Radiator Springs, Mater and Lightening McQueen.
He was in awe. We all sat back and watched him as he nervously attempted to kiss Lightening McQueen's fender. Dork.
We made it to "Hollywood" and posed for some more photos.
Nguyen and I rode the Tower of Terror
pre-Cameron and from that day forward, I vowed to NEVER ride it EVER again. So we made Dani ride it by herself.
Haha.
Nguyen and Cameron enjoyed
this little ride in "It's a Bug's Life."
Weeee!
Bumper bugs: Nguyen took his job a little too seriously.
I don't think either of them got out of this one little section of the arena...they were too busy attacking each other.
Next we hopped on the "Golden Zephyr" which was actually silver? Whatever. Mom and I decided that ride was a little much. We are definitely the biggest weenies on the planet.
A view of the scary
Ferris wheel from the Golden Zephyr.
Cam and Dani took a ride on the "Jumping Jelly Fish!"
The night prior to this, one of my
facebook friends alerted me that
another one of my mommy friends was also at
Disneyland so we planned to meet up quickly and say hi. I have "known"
Kristin since I was pregnant with Cam and she was pregnant with her sweet little man,
E. It was so nice to finally meet her in person. She is just as sweet as I thought she'd be!
We decided after lunch that California Adventure kinda sucks so we opted for some time by the pool instead. It was so nice and Cameron had a ball!
Nguyen was grumpy, tired, and sunburned and later took a nice little snooze right there on the lounge chair.
And my bathing beauty hung out with the rest of us gals.
We told jokes...
and rested.
After a couple of hours by the pool we made our way back to our room. Just as were about to head out again we heard a knock on our door. It seems that
Aunt Nutty caught wind of what room we were in and had a beautiful fruit basket sent to us. What a nice Aunt Nutty!
After enjoying our yummy treats, we made our way down to Downtown
Disney where we stumbled across the Lego store:
Sadly, this was probably the highlight of Cameron's trip...forget Disneyland!
(note to self: next time, take a trip to Lego Land and save a few bucks)
While walking around, Nguyen saw this sign and decided he needed a cup of coffee because it was:
He agreed.
With nothing much left to do and know leaf left unturned, we decided all there was left to do was sit by the fire in our hotel lobby.
And with that, we made our way back to our room for our last sleep in Disneyland.
The next morning we all got up and got our things organized and packed nicely back into our bags. The bellhop came to take our bags down and loaded them in our car as we finished getting ready for our long drive home. Finally, we made it down to the lobby and began to load the kids in the car only to realize...our backseats were missing? At first I was calm and thought surely the seats were just sitting somewhere in valet storage for whatever reason but after a few minutes of blank stares, it was apparent that no one in valet knew where our seats were and that they most definitely were not going to turn up anytime soon. And just like that a big black cloud came and rained all over our fun-filled Disneyland vacation. Boo.
Nguyen raised quite a fuss (rightfully so) and Disneyland offered us food and park vouchers while they called in their "investigation team" to go over the video tapes from their parking lot. They informed us that this process was going to take "quite some time," so we opted to have one last breakfast with the characters while we waited.
Gabby practiced her audition for the next Froot Loops commercial:
And we even got to meet some characters that we hadn't seen before!
After breakfast we went back to check on our "situation." We found Nguyen still sitting in the valet area, still looking quite upset. No progress had occurred and while we were away. They (Disneyland) actually told Nguyen they were "not responsible for lost or stolen property." Hubs was not a happy dude and neither was I. How were we going to get everyone home?!!
Disneyland actually offered to rent us a car for our trip home but that would mean we would have to split up so one person could drive our car back home. After we filed our police report (and made sure our attending officer was out of sight) Nguyen and Dani set up shop right there on the naked floor of my car and off we went on our six hour journey back home.
Can you believe that?!
.
We're still quite upset that Disneyland was so shady regarding this entire fiasco but there's nothing we can do about it and luckily our insurance is handling it but still!! I am just thankful they didn't take my middle row with the baby seats (which we believe they intended on doing as gabby's carseat was completely unhooked!)
All in all, we had a great trip and we are already planning our next visit!
Thanks for reading!
3:37 PM
Posted In
cameron
,
disneyland
,
gabby
,
gma
,
nguyen
,
sheree
This past Tuesday, Wednesday, and Thursday, we made the trip to the Happiest Place on Earth! It was the first time we drove and we also brought along G-ma (my mom) and my friend, Dani, who I grew up next door to and babysat as a young girl. We left around 7pm on Tuesday evening and arrived at the Magic Kingdom around 1:30am. Most everyone (except for my mom and I) slept the entire way there. It was a smooth drive and I know now that the drive there isn't so bad and I could definitely do it again!
Warning: Picture OVERLOAD ahead!
Our first morning at Disneyland we decided to have breakfast at Storyteller's Cafe. We met some pretty cute little creatures there like "Dale."
I wasn't sure how this was going to play out for Gabby. She would either LOVE the characters or she was going to rip their heads off. Luckily, she thought they were pretty awesome and showed them lots of love.
Monkey Love!
After breakfast we made our way to the park. With as many times as we have been to Disneyland, I think this was the first trip where we actually took our picture in front of the castle. I think it was because we had extra adults this time and we didn't actually have to stop other people to click our picture. So thanks Dani, for finally allowing us to get the "token" Disneyland photo!
We hopped on the first ride we saw which was Snow White's Scary Adventure. I should have known better. We started off all giggles and smiles:
But poor Cameron was traumatized from that point on. It really is a frightening ride...not in the way of adrenaline or thrill...but actually SCARY. That wicked stepmother is no joke!
.
We decided to keep it light for the next ride and opted for the teacups! Cameron enjoyed it, I think.
After the teacups, we decided to take a spin on the Matterhorn Bobsleds. I actually got to ride too. It's been so long since I have been able to actually ride a ride! It was so fun!
Waiting in line...
Cameron and I took a spin on the rockets in Tomorrowland!
And then we took a Jungle Cruise!
Cameron was still a little worried about what was going to pop out and scare him at any given moment so he spent the entire cruise in a state of panic and ridden with anxiety.
Gabby was so amazing on all of the rides. Not really scared at all.
About midway through the day, my girl was pooped.
A konked-out Gabalicious.
This is what Cameron looked like on the Pirates of the Carribean ride. He was
not liking it at. all.
Poor dude.
Gabby woke up and thought it was AWESOME!
After all of those rides, we decided to head back to our hotel for some freshening up. But first...
ICE CREAM!
Someone does NOT want to be left out!
At a snails pace, we eventually reached our room where we lounged around like bums.
What would we do without our iPhones?
Already exhausted on day ONE!
After our little rest we headed back to the park to tackle some more rides.
Tiny Girl didn't last long.
But guess who went on Splash Mountain?
I was SOOOO nervous to let Cameron ride but he met the height requirement so I made sure Dani sat in the back and hugged on to him for dear life when we hit that drop.
My boy LOVED it and begged to go on it over and over again.
My little adrenaline junky!
As we headed out of the park, we spotted the tail end of the parade so we stopped to enjoy it.
We had dinner at an italian place in Downtown Disney shortly after we left the park.
Tired much, Gabs?
Cameron couldn't even make it through his meal. Dude was EXHAUSTED.
Thank goodness our hotel was right there in Downtown Disney. Nguyen didn't have to walk far with "Dead-weight Cam."
We finally made it back to our room and Cameron was out for the night. I was nervous about how the sleeping situation was going to pan out but it ended up working out okay. Cameron and I had our own bed. G-ma had her own bed. Dani slept on the couch and Nguyen and Gabby made their beds on the floor. I can't say I really slept all that much...I was so concerned Nguyen was going to smother Gabby in the middle of the night so I was constantly getting up and making sure the blankets and pillows (and Nguyen) were away from her.
I thought for sure the kids would sleep in but OF COURSE, I was wrong. They were up and ready to roll by 7:30am. Our mission for the day was to tackle Disney's California Adventure theme park. Stay tuned for more fun pics tomorrow!!
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