The Phamily Blog

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.

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.

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.

This morning we had our third visit with the audiologist. It is not uncommon for children with Down syndrome to have problems with their hearing or with reoccurring ear infections. This is why we have been trying to get an accurate reading on Gabby to see whether or not she is hearing properly. So far, the last two audiology appointments have given us inconclusive results.

She passed her newborn screening with flying colors although I sometimes wonder if that was really the case since we weren't aware that she had Ds until she was already a few days old. Did they conduct the test after they knew? It shouldn't make a difference but it seems like they might try to be extra sure they were getting the correct results if they already knew she had a predisposition to such problems. Doesn't matter now I suppose, but still I wonder.

Anyway, last July she had a follow up with the audiologist. They took Gabby and I into a sound-proof room and I sat her on my lap. The audiologist cued different sounds at different decibels on either side of the room. If Gabby looked towards the sounds, that was good but honestly, she was bored with that whole situation and it didn't matter how loud those sounds were...she wasn't about to turn her head in any direction, no matter what!

Obviously I know she can hear. It seems she can hear a pin drop which is why I am constantly tiptoeing around during nap time and getting on Cameron's case every time he makes a sound. Unfortunately, these audiology reports don't agree with me. At that same appointment last year, they stuck tiny little probes in Gabby's ear that were supposed to tell him something (don't ask me what) and that something told him that Gabby may have some fluid in her teeny tiny ears. I kind of brushed that whole appointment off and we decided to reschedule another appointment at a later time. That follow up appointment was last week and guess what? He got the same pesky results. Gabby is responding at about 50 decibels. Optimum response should be around 20 decibels. So, she's not far off but we really need to figure this out.

I still feel pretty strongly that Gabby can hear well but now I am starting to really wonder if I'm wrong. The audiologist told me last week that the next plan of action would be something I would have to think about... We could have an ear specialist have a look at her to see if he/she could see anything in those tiny ears (since not a single soul has been able to thus far) and/or we could have Gabby put under general anesthesia in order to conduct a test in which small devices are placed behind her ears that measure her response to certain sounds (They read her brainwaves, I guess?) I obviously wanted to avoid that so we met with the ear specialist today. She actually was able to see in Gabby's ear which I was just overjoyed with. The bad news is that Gabby does, indeed have some fluid in there. Whether or not it is preventing her from hearing well, we can't really tell.

So...The ear doctor today felt that we could take the "wait and see" approach. We're going to try for another couple of appointments with the audiologist to see if he is getting the same reading. (Keep in mind that when he sticks those little probes in her ears, she has to be restrained and thus, throws a SCREAMING fit which could, in turn, skew her results) This is why we're going to try again a couple of more times. If the results come back the same, we will proceed with tubes. It's really not a big deal, but at this point, I just feel bad for her...anyone is a white coat is a BAD, BAD person. We've really had enough pokes, prods, and hospital visits to last a lifetime, if you ask me! (Did I mention she landed her tiny butt in the ER on Easter so she could get an IV?) So yeah...people in white coats = no bueno.

So those are the current happenings with Miss Gabalicious. It would actually be nice if we do end up having to go the tube route and she does, indeed hear better...That could mean so much in the way if verbalization. Not that she isn't verbal, it's just that she really doesn't have any solid words other than "uh uh" as she shakes her head, or "nuh nuh" (no no). This could lead us down a path of verbal explosiveness. Hmm...maybe I should think this out a little further! :)