March for Babies

Saturday, August 2, 2008

Lions, and Tigers and BAERs, Oh My!

Meow is a Lion. He is Amanda's best friend in the whole world. He came as a gift from the MGM Grand in Las Vegas (Thanks Nancy!!!!). He has been through the washer and dryer a couple of times. His mane has now felted itself into a tight afro. His plastic whiskers melted a bit into bendy things that looked more alien than animal so I eventually cut them off. All of these changes have made him that much more huggable. (Much less tickling of the nose.) So, our daughter already knows something about unconditional love. Of course, this is also evident in the fact that she will cling to me and at the same time plead "Noooo Pokes"! I am the only one who pokes her these days. When we go to the hospital for labs she gets a numbing cream over her port so blood draws and chemo are painless. It hurts more when we take the band-aids off the next day. Meow is helping us again this weekend. He is playing patient while Manda uses her new doctor toys to check his temperature, blood pressure, listens to his heart and lungs and looks in his ears, nose and mouth. I think these play sessions show us just how far she has come in the last month. Yes, it has been a month. She had her first chemo treatment on the first of July. Daddy started his new job the same day so he has 30 days in there already. It seems both a long and a short time.
When inpatient, Amanda is supposed to wear the hospital issued jammies which are the children's version of the gowns that cover 3/4 of one's personal places. These jammies feature sleeping baby tigers which I assume are supposed to be cute and induce feelings of tranquility at the same time. The problem is, even the small sized jammies cannot be snugged up tight enough to fit Amanda. The pants literally fall right off of her. The shirt hangs down to her knees and could act as a night-shirt in its own right, except for one thing. Manda has a habit of opening the tabs on her diapers if she has access to them. If she is wearing shorts or pants she leaves the diapers on. When dealing with a child who is NOT yet potty-trained AND who is dealing with diarrhea you want the diaper to stay ON. So, I am already planning what to pack for our next trip to the hospital (Aug 14-16) and I will include PJ pants and shorts for her to wear with her tiger shirt.
On Wednesday, Manda had a BAER test. (Tell the truth, you either didn't notice the spelling in the title or you thought I made a typo right?) Actually, BAER stands for Brainstem Auditory Evoked Response test. Since one of the chemo drugs can damage her ability to hear the high frequencies, she needs to have her hearing checked after/before each dose. She once again passed with flying colors. So far, she has not had any major reactions to the chemo drugs we are using. I said it when she was first diagnosed and everything was SO new and SOOOO scary. Amanda has come out with the best case scenario for everything she has ever faced. She was a 24-weeker but even the doctors can't tell if they have not read her chart. Her heart defect healed itself with no intervention. She never had so much as a sniffle until she went to daycare, which we did in part to build her immune system. (In short, we wanted her to get sick. They did not tell us that WE would also get sick! This should be in bold print in the paperwork when you register the child.) Basically, what I am saying is that I have faith in my girl to finish treatment cancer free. This will be one more story we can tell to our future In-Laws about how she has given us a hard time. At the same time, emotions are running very close to the surface these days. Songs in the car, TV shows (or commercials), anything that tweaks the heart-strings even a little bit can start the tears flowing. I guess I'm just a softy. I just keep thinking back to time I spent with a girlfriend after her daughter was born. In the midst of hormones and nursing and figuring out the newborn routine she looked at me one day with tears flowing down her cheeks and said, "It's a crying day". I just knodded my head and said, "Okay", and it was. Sometimes, you have to vent the boiler so that it doesn't blow.
Labs on Monday, hoping to send more good news.

Mere :O)
Sent via Motorola Q by Sprint

1 comment:

bboulderr said...

This is one of those times that I wish I sewed because I'd think it would be great to have some light-weight (like the hospital gown material) shorts that had snaps on them for the seams. Or at least a ties like a bikini (if it were shorts) might. Seems (horribe pun, my apologies) like it would be a lot easier for you than pulling shorts on - particularly in those late night hours.

I'm still here thinking good thoughts for you guys, and I'm hoping Monday's labs come back with positive news.