76 days to go--things seem almost normal

So far so good. Lisa has been doing very well. It has been a nice change of pace these past two weeks. We've almost gotten back to a "normal" schedule or perhaps we've just adjusted to the new norm. It's nice having everyone sleeping under one roof again. Lisa chooses to sleep in the spare bedroom all alone claiming her own bed is not "cozy". Not sure what Grandma Mac is going to do when she comes for a visit....looks like she has a roommate.

Health wise, Lisa looks great and is back to running around and making us laugh. She looks so good, I have to keep reminding myself that she is "sick" and can't be exposed to crowds or germs....it's seems nearly impossible that the smallest germ could put her back in the hospital. I pray every night that her health keeps holding and we make it thru the 100 days without a stay at Motts. Her eating has improved slightly and she still gets the IV nutrition at night. It's tempting to just take her off IV all together to see if her appetite would come back, but we have to be careful, she needs her strength and nutrients to stay healthy. We don't want to risk anything and stop the IV if we don't know for sure she will eat enough to keep up her strength.

Last week she got her first vaccine. It was a long day at the hospital that included a CT scan, blood labs, office visit and her own custom made vaccination. She did really well. The vaccine was the hardest thing because of the "poke". I didn't want Lisa to get all worked up so I waited until right before they gave the shot to tell her. Unfortunately, this meant I had to wake her up from the nap she was taking on the exam table...like I said, it'd been a long day and her body went into snooze mode while we waited for the nurse....being woke up from a nap is enough to make her grumpy, add in the news she is going to get a shot...well, there tends to be some crying and screaming. But, we got to do what we got to do. Being the trooper that she is, she played the "who can say ow louder" game with me while she got her shot. I definitely yelled the loudest, but they let her pick a prize out of the box. After that, we called it a day.

Next week Tuesday will be a busy day. Lisa goes back for her second vaccine shot and we meet with the radiologist to learn about the type and duration of radiation they have planned for her. Sandwiched in-between those two appts. is a follow-up with Maranda's surgeon to see how her latest MRI looked. We still have no real resolution on her back condition. Once surgery was done the recommendation was that she wear a brace even though there is no scientific data to support that wearing the brace will remedy the condition. Basically, it's to make us feel like we are doing something, with the reality being that once she is done growing she will most likely have a spinal fusion done. We will definitely keep discussing and exploring options, but at this point, we will not have her wear the brace but will keep a close eye on the curve with x-rays and MRIs. She'll also be working with a chiropractor.

On a GREAT note, Maranda was named student of the month by her teachers. This is an award earned by select students who display good character traits! It was very heart-warming to hear Maranda's teacher read why she nominated her. While we all know Maranda is awesome, it was nice to have the school recognize it as well and it was a reminder of how blessed we are to have 4 wonderful children in our home. To read Maranda's nomination, click here.