Settling in... a work in progress

So I've been home for a glorious week now, but it's been a little bit of an adjustment. Lily guilted Mommy into letting her skip preschool on Monday (December 8) so that she could see me, and Mommy and Laura realized quickly that the next couple of weeks would be filled with reinstating routines and learning to share again (both toys and attention).

It was a busy week, but I was able to stay at my own house for most of it. A home care nurse came on Monday, and Mommy and Laura got used to giving me my medicines and flushing my PICC line. I didn't even fight taking my oral medications much. I sure miss my old routines, but I know it'll take a while until we get back into the swing of things. We had so much fun on that first Monday night playing with Daddy, taking a bath together, and reading books as a family, that Lily and I did not want to go to bed. Do you blame us?! We just didn't want it to end... but the night inevitably concluded with tears.

Tuesday morning was spent at the hospital (starting at 6:45am!) for my chemo by lumbar puncture and clinic visit. On Wednesday, Lily and I went to see Santa with Nana and Laura. While I was very excited to talk about going to see him, when it came down to meeting and talking to him, I was terrified. Needless to say, Nana bought a really cute picture of Lily with Santa Claus. When asked if I had gone to see Santa, I replied solemnly, "Yesh... Santa's B-I-I-G-G-G-G!"

On Thursday and Friday, Laura took care of me at our house. She was pretty patient with me, but I know she’s having some difficulty with knowing which behaviors of mine are related to my illness, and which behaviors are simply a result of me being two years old. To be honest, Mommy’s having the same trouble. Friday night, Lily came home feeling under the weather, and Mommy ended up taking her to the same urgent care where we went because of my initial limping in mid-October. I could tell Mommy was a little nervous about going there with Lily, but I was sure glad Laura could stay with me at home. It turned out that though the strep test came up negative, the doctor at urgent care treated Lily for strep. They told Mommy that it looked like it, and with me just getting home earlier in the week, they didn’t want to risk it. Another complication was that Lily and I needed to be separated for 24 hours, until her antibiotic kicked in.

Saturday morning, Lily and Laura left for Nanna B. and Poppa’s house, and Mommy’s fun friend Nancy came over to play with me. She even brought cookies and bags of toys with her! How cool is that?! While I didn’t want Mommy and Nana to go shopping without me, I agreed to it when Mommy promised to get me a Dora watch. Nancy and I had a great time building towers (and knocking them down) and playing with something called a toy record player, among other things. I’m sure that Nancy is going to make a great grandma someday, but until then, I’ll let her get her “kid fix” with me (I enjoyed spending time with her, too).

Mommy and I were able to play in the afternoon and evening, and Lily surprisingly wanted to stay overnight at Nanna B’s with Laura. I cried when I woke up from my nap and couldn’t find her, and in the morning on Sunday, I cried for her again, since she still wasn’t home. Mommy and I thought she would want to come home and make candy, cookies, and ornaments with us, but she wanted to go to Avery’s to make cookies first, then come home and do those things with us. A typical Kniskern… wanting everything! We waited for her to do the fun holiday activities, but by the time Daddy brought her home, we settled on just making candy.

Daddy went hunting with Uncle Stefan on Monday morning, and Laura stayed to play with me. When Mommy got home from work with Lily, we started painting and decorating ornaments, and the home care nurse visited. Changing the cap and tubing for my PICC line went fine, but the dressing change was another story. Let’s just say that Mommy asked Laura to take Lily out of the room for a little while. I’m sure glad that I’m getting my central line on Wednesday! The nurses say that the dressing change isn’t as bad, and the line only needs to be flushed once a day, rather than twice. We’ll see…

My labs came back Tuesday morning, and they were great! Though my white blood cell count was low (3.5, and normal is 6.0-17.0), my Hgb wasn’t too bad (10.5), my platelets were normal (325,000), and my ANC was 2,030. I’ve met the criteria for my central line placement as well as starting the next phase of treatment, so it will begin Wednesday. Mommy’s a little worried that my weight has gone down too much, since I haven’t been eating much, but hopefully that will change with the next round of chemo.

Mommy is going to try to post some pics for me later today, but I know it’s getting more difficult for her to keep up with the blog when she’s working and taking care of Lily and me. Maybe I’ll nap so that she can get that done…

1 comment:

Emily said...

Hey Becca,

I am so glad to hear about all your fun activities at home. It's gotta be nice to be back in your own house. I can't wait to see more pictures of you!