Verdigets.com

Allyson was at my bedside this morning at 4a.m.  She slept a little (and I mean a little) better last night than the past three nights.  - She lounged between Brad and I for a bit and then had to use the bathroom.  When she was finished, I put her back in her own bed.  When Brad woke up to go to work, he put her back in the bed with me.  She slept until close to 8a.m.

We had to go to the docs today to get her PICC line dressing changed and to get counts.  As I’ve said before, she HATES having the dressing changed - the whole sticky tape thing and having to hold her down…she HATES that.  Anyway…the deed was done and she was fine.  Dr. Bob came it to chat with us and look at how her port site was healing.  I was curious to see when we’d be able to get the new port put back in.  Well…Dr. Bob said we needed to do a nasal culture to check for infection.  Yes, a nasal culture.  (Sounds like something Allyson would enjoy, right?  WRONG!)  We had to hold her down for that too - and the darn probe made her nose bleed.  Anyway…Dr. Bob said it would take two days for the results to come back.  If it is clear, we can maybe get the port in next week some time.  We’ll have to follow a certain protocol for bathing, etc. three days prior to the surgery to ensure she is clean, clean, clean.  If the culture shows any sign of infection, we’re back to ground zero…we return to another ten days of treatment and we go from there.  (Yes, I said ground zero…Let’s just hope and pray that the culture comes back clean and clear.  Can you imagine…infusing meds four times a day again…ugh!)

Benjamin had a great day at Tita’s.  She says he is very into playing with the boys right now.  He ran in and gave one of his little friends a hug when Brad dropped him off today.  He is drooling something fierce again.  Those eye teeth are coming in right now.  Are the molars on their way…?

One more backpack weekend complete!  Ally did really well with the backpack this weekend.  We didn’t have pump alarm issues this time, but we did have a pump scare.  Saturday morning before the nurse came to change Allyson’s bag from chemo to IV fluid, Brad just happened to check the bag and pump.  Usually, the pump signals when there’s just a few ml’s of fluid left in the bag.  Well, it didn’t signal…When we checked the pump earlier in the morning, the pump said there was more fluid in the bag than we thought should be left…when we calcalcated the amount of time the pump said we had left (something like three more hours), we knew that was not right.  Brad checked the bag..it was empty (it had to have just finished) and the pump was pumping air through the line…air was through about three quarters of the line.  We shut the pump off until the nurse got there.  Basically she told us it was a good thing we’d turned the pump off!  Thank GOD we checked the bag when we did.  It could be dangerous if the pump kept pumping air into Allyson’s veins!

Other than that scare, we were fine and Allyson did great.  She did NOT sleep well at all the entire time she was hooked up (Thursday night - Sunday evening).   She tossed and turned every night.  Last night, her alarm signaled - just a kink in the line.  Once I got it straightened out, it was fine.  She also woke up with the IV tubing around her back and couldn’t get fix it on her own.  She sat up and told me, “I stuck!”  -  I also got no sleep either.  I just can’t sleep at all when she tosses and turns.  I worry so much about the IV tubing, and I don’t like for her to be uncomfortable.

We were able to unhook her this evening around 7p.m. after the last dose of the “rescue drug”.   Freedom (for all of us) once again!  I am hoping she’ll sleep better this evening.  She’s got a bit of drainage going on right now and it settles at night and causes her to cough.  Let’s just hope that doesn’t keep her up tonight.

Benjamin is cutting three of his eye teeth right now.  (We knew it…he was “cutting teeth crabby”.)  The tips have just broken the skin.  When these come in, he’ll have all his front teeth.  All he needs to cut now are his two year molars.  I am not looking forward to that at all.  If he knew that was coming, I’m sure he’d say the same.   — He’s discovered books now.  YEAH!  I’ve been waiting for that to happen.  He’s still not really interested in reading a  whole book.  He loves to look through them and turn the pages.  He’ll sit in front of the toy bins now and pull some out and look for though them.  He LOVES to grab one and back himself into my lap (or anyone else’s for that matter) and flip through it.

Another busy week is on the horizon.  We go in Monday to have the dressing on her PICC line changed.   Tuesday - THursday, Ally has therapy.  Friday, back to the doc’s for chemo.  We’re hoping maybe next week or the week after she’ll be able to get her new port put back in.  The PICC line has worked well for her, but I’ll be glad when it’s not hanging from her arm anymore.

News!  News!  News!  We got our court date for Benjamin’s finalization!  We will go to court Thursday, August 28th.  At that time, Benjamin will be legally ours and the adoption will be finalized!  Apparently the hearing goes fairly easily, but one of us does have to “take the stand” and be “questioned” by the lawyers - just basic questions so we’re told.

Ally did well at her therapy sessions today.  She worked very well with both Ms. Carolyn and Ms. Sherry.  Sherry is trying to work on gaining back the strength in Allyson’s legs.  She did lots of sit to stands and stair climbing.  Sherry commented on how she can see Ally’s left leg is not as strong as her right leg - that doesn’t surprise me.  Funny she should say that because the left leg is the one Allyson was limping on when we found out she has leukemia.

Oh…Ally’s hair is growing back!  I can’t remember if I’ve posted about that yet.  Brad thinks her hair is coming in darker.  I’m not sure…I can’t tell if it’s darker or if it just looks like that against her bald head.   I’m hoping she gets a little bit of body to her hair…her hair was straight, straight, straight before it fell out.  They say it can come in different that it was…we shall see!

Tomorrow we have another PT session…tomorrow night the nurse comes out to hook her up to her fluids.  Ah…the backpack weekend begins….

We’ll start with Benjamin…He had a great day today.  He was so excited to see Allyson this afternoon…it was so cute.  - This evening when both kids were finished with dinner, we took them outside to swing and play on the back patio.  Benjamin loves to swing (almost as much as Ally does)!  When he knows he’s going outside, he repeats over and over again, “Swing!  Swing!”  He’s getting better about the grass…he used to just sit or stand wherever he was placed and not move.  Now, he will run all over the yard, but I still think he doesn’t like the feel of the grass.

Ally had a great OT session with Ms. Susan.  I am so glad!  For whatever reason, she hasn’t wanted to do Ms. Susan’s work.  She’d play with her, sort of, but she wasn’t interested in her work.  Today, she did so well…They worked on cutting, hand strengthening, and tracing her name.  (She’s making a construction paper chain decorated with “jewels” for her daddy.  She has to cut the paper strip to make the chain, and then she can stick a “jewel” on it.)  Ms. Susan also had a Backyardigan sticker book as a reward for Allyson.  - Between the jewels, the Backyardigan stuff, and Ms. Susan’s patience and kindness, Allyson had a great session!  Allyson had such a good time, she didn’t want to leave.

Ally has both a PT and speech session tomorrow.  She’s having a good time going to school for her therapy sessions.

We went to the docs today to get the dressing on Allyson’s PICC line changed.  Dr. Rob said everything looked good on her incision (from the port).  We are on track to get the new one a few weeks from now.   -  Ally did NOT like getting the dressing changed at all.  The tape was VERY sticky this time and it was hard to get off.  They were even using the “magic soap” to help remove it, but Gina was still having difficulty removing it.  We (yes, it is a three person project - removing tape is the absolute worst thing for Allyson) finally got it off!

No word on a court date for Benjamin’s finalization.  I am going to email the lawyer and see if he’s heard anything yet.  I’m getting anxious to get this taken care of.

This is a backpack weekend for Ally.  We’re gearing up for that…only two more backpack weekends left!!