Wednesday, August 20, 2008

Controlled Chaos!?!

Life as we know it....has just become crazy busy. Doctors appts., home health visits, occupational therapists, physical therapists, developmental therapists, speech therapists, pharmacies, teachers, schools, the list goes on.

Jack started school today. It was so time for him to go. He and Brooklyn have been beating each other all week. His attitude - bad, bad, bad. When I bring up school and how he can't act that way, his comment: "I would never act that way at school. Only at home." Gee, aren't we the lucky ones? Anyway, he got the teacher he wanted this year and has about 5 or 6 kids he already knows in his class. They get to sit at desks this year instead of tables, so he's excited about that.
Brooklyn doesn't go back to school until after Labor Day. She's going to be testing out the afternoon class this year. I think it will work well with our schedule and she knows a couple of the kids in that class, as well. (Sorry, no back to school picture for her, yet)

Olivia is doing awesome. We are starting all of her therapies back up beginning today. She will have physical, occupational, and speech once a week. We are pushing her motor skills really hard to try and get this girl moving more effectively! She had a visit to the eye doctor on Monday. All is well there - weak, but that's due to lying on her back for 12 weeks. We'll go back in 6 months.
Her St. Jude appt. - awesome. All of her numbers are still great. The results from the labs drawn last week were all within normal ranges, so they said we have to assume that her red blood cell problem from back in February, March, etc... was due to her heart. The mitral regurgitation was just blasting her blood through and it was breaking down the red blood cells. This is great news. It may continue, but because her heart is functioning so much better, it shouldn't cause as many issues. We will repeat all of those labs in a couple of months, since this was only 4 weeks since having a transfusion. We are going to repeat the bone marrow biopsy sometime between Sept. 8 and Sept. 18. (we don't return to St. Jude until Sept. 8 and Dr. Al is going on vacation Sept. 18, so he wants to do it sometime between the two). I think it's supposed to be outpatient, but it is Olivia, so we'll see what she decided to do. The plan is to do it in an PICU bed with the PICU docs doing the sedation (this makes me feel soooo much better!) So, we'll get to see all our friends for a little visit!
Here's where we are at regarding the leukemia:
1. If her numbers are worse, he will make plans to start chemo.
2. If her numbers are the same or better, we will repeat the biopsy in about 6 months.
She is still having trouble keeping numbers stable regarding her blood thinning medication, so she is on a course of Lovonox. She has to get 3 shots of it in her tummy - ouch! (she's got 2 down, just one more to go tonight) Hopefully, this will help figure out the problem and get her where she needs to be.

The biggest news of it all: My baby turns 2 next Wednesday. I'm getting pretty emotional about the whole thing. She's had a huge couple of years. It's amazing to look back and see how far she has come. Okay, enough of that. I was going to put an open invitation to the b'day party on the blog, but I didn't want people to feel obligated. We wanted it to be a huge celebration, so if anyone wants to come and have a cupcake with us, drop me an email! (

You're all more than welcome! After all, it's your prayers and kind thoughts (and the handiwork of the docs and nurses, of course) that have gotten Olivia where she is today!


Ellen Davis said...

What darling invitations. If we lived closer, we would definitely come by. I do have to ask, though: where do you find the time to DO such creative stuff like this?

Anonymous said...

I wish we could stop by - the boys would love a cupcake :) Maybe we will make some and eat them in Olivia's honor! Tell that little cupcake that having had lovenox injections in my tummy this is one area I understand what she is going through and boy are my thoughts with her :( I will be sending extra prayers her way and if you could give her an extra belly kiss for me that would be good too.
Love, Carol Anno

Pottymomma said...

It was so nice to meet youguys at the school today. I've been following your blog for a while and saying prayers for your little girl. I've been thinking about you alot since she came home from the hospital and wanted to offer to help with your older ones if you ever needed it...then I thought, "she doesn't know me at all!" LOL
Let me know if I can ever help. My kids always love having someone over to play!


Judy said...

We would love to be there for Olivia's party, but a 14 hour drive just doesn't sound that appealing right now! So we'll be looking forward to seeing lots of pictures!! Dick and Mary Ellen will be coming out Labor Day weekend. I'm so excited to finally have some Chattertons meet McKenna!!
I hope it's been a great first week of school for Jack! It sounds like everyone is ready to get back into a routine! We start school after Labor Day this year, which has been very nice!

Thistle Creek Photography said...

Wow, 2 already!! Amazing how time flies by.

Keeping you in my thoughts and prayers.

Happy Birthday Olivia!!