Monday, September 29, 2008

So as not to be outdone...

Well, for all of you Cessnas who are keeping track, Kayla, Melanie and I have all posted today. Bummer: I don't have time to upload pictures, but I thought you'd love me almost as much if I at least give an update!

We went to the spine doctor today, and the plan is to watch and wait a bit before doing anything major on the kyphosis. He said that surgery definitely will be needed because it will be very difficult for her to sit independently otherwise. We don't need that. She needs to be able to do as much as possible since she'll be spending a lot of life a wheelchair. And he doesn't have any problem with Maddy positioning herself in the S-curve that draws a lot of attention. She's obviously comfortable that way, and she settles right down when we rock her that way.

Grandma, the little notebook that you gave Carli has been a constant companion--she's filled it up with pictures and letters. She started taking it in her backpack so that she could write on the bus. I got her another one today, and she's been sounding out words and then drawing pictures to go with them, all on her own.

Well, I have a recommendation for naming the next two hurricanes: Carli and Olivia. They've been through my house, and I think they're Category 5. So since I've been working furiously on schoolwork, I missed clean up time with them, and it's time for them to go to bed. I'm breaking with my normal rigid rules of them helping with clean up because I cannot wait until Carli comes home from school tomorrow to work on it. So I'm off! Only three more hours till Maddy's last cath and I can go to bed!!!! :) Yippee!

Saturday, September 27, 2008

So tired I could cry

I feel a bit like a truck hit me this morning. Not that I would know what that feels like. Maddy spiked a fever yesterday around 5p and she was not happy until about 6:30A. I'm so grateful that the fever has broken, because with all the different issues she has, I was a little worried. Especially on the weekend. I didn't know if I should call the doctor (her fever was 102), and which doctor? And on the weekend, who could I get ahold of? I guess I could have called the NICU and asked.

So I did get to sleep from 6:30--11:15A or so. But I'm still gritty and struggling to get the things done that should be done.

Like schoolwork. Whenever a new class started before I'd be done with the first week's stuff by the first day or two. It's now the third day, and the only thing I've done is read one chapter and posted my bio. (So what am I doing online?)

We had fun last evening with some friends that we met through Carli's preschool last year. Some of you may remember Carli's special little friends Liam and Wyatt. The six of us adults took the seven kids to Pizza Hut. Wow, I haven't had a HOT PH pizza in a LONG time, and I don't remember ever having the stuffed crust pizza. It was the best unhomemade pizza that I'm had in a long time. Then we went back to Lori's house for apple crisp and ice cream. Oh, my. It was so delicious.

I've enjoyed spending time in Carli's classroom. Last Thursday, I went in to read to the kids for the Accelerated Reader program. I enjoyed watching Miss Hannum in action, and I was really impressed. Friday, both Kindergarten classes were making apple dumplings, so I helped out with that, too. While we were waiting for them to bake, I got to read to the class as a whole and listen to some of their learning songs. And I got to eat most of Carli's apple dumpling. She just ate the ice cream. No complaints here. Yesterday, I helped the PTA ladies serve a treat to the kids during recess, and then went to Carli's class to read to them again for the AR program. I read 19 books to 19 kids and then helped them with their quizzes. I think I know most of the kids' names now, and they know mine. Or they think they do. When I walked in yesterday, a lot of them came to hug me and a few said excitedly, "Hi, Mrs. Raspberry!"

Monday is Madeline's spine doctor appointment. This week I got an email from a lady on our SB email list who told me that her son had a higher lesion than Maddy, but also had the same kyphosis (severe curvature). She said her son did the same thing that Maddy does (flipping backwards when I'm holding her upright and facing me), and she said that her son's doctor regretted not documenting everything that her son did, because all that flipping backwards ended up stretching the tendons, etc, and corrected the kyphosis. You can be sure that I no longer worry about her s-curve position, as I call it. She sleeps like that, too, and it had always had worried me. I'll be curious to see what the spine doctor thinks. Linda's son is now 23, and at that point there had been no documented case of a kyphosis healing itself through "therapy."

Well, I have to get to my schoolwork (yippee), and some paperwork for Maddy's upcoming appointments and applications for disability (double yippee).

Take care!

PS...Sorry for the whiny post. Give me some sleep and I'll give you a cheery one! :)

Tuesday, September 23, 2008

Quick note

Happy Autumn! It's so beautiful here. Maybe a little warm in the afternoons, but the mornings and evenings are absolutely perfectly cool, and I love it. I really think fall is my favorite season.

I wanted to give you all something to pray about (not that your list isn't long enough). As you know, we are heading into RSV season, and RSV is not something that Madeline can afford to get at this point. Because of her lower immune system due to the DiGeorge's syndrome and her respiratory insufficiency, her pulmonologist really wants her to have the shots. She is working to get them approved by insurance, which may be an issue since Maddy wasn't really a premie, and therefore doesn't fit the normal protocol. I've been told by the PT who evaluated Maddy that each of the shots (5 in all) costs $1200. If insurance doesn't pay for them, we will be in the house from October to February. I really would rather not, but I will if necessary. So could you pray that the insurance will approve the shots?!! Why do insurance companies make medical decisions anyway?

Well, I'm off to read the first three chapters in my strategic planning textbook. Yes, I'm finishing up, I hope! I have six more classes. I may be crazy, but if I can't swing it with everything else goes on, I'll withdraw again for a while and try again later.

Here's to my sanity!

Tuesday, September 16, 2008

Sneak preview

Here's a preview of the upcoming post on Glen's blog ( Like I said two posts ago, we're all really jealous. BTW, this picture doesn't really do justice to the giddy guy that called a few minutes after this!

I forgot to tell you...

...about some other random things happening around here.

Olivia cracks us up with her pronunciations. Yesterday, she called the baby "Maddy Cake!" And last night at supper (ziti!), she said she liked "peckaroni." We about died laughing.

I've started reading Little House in the Big Woods to Carli. I was so excited when I looked at them last week and realized that they would be on her level. I thought it would be a few more years. I've been waiting to read those books to her since before she was born! We only read a few pages at a time, but she really listens and asks questions. She thought it was really funny that Laura and Mary ate the pig tail.

First Steps came today to write the goals and plan of service with me. I'm very tickled that it looks like a lady whom I've already met will probably be her therapist. This lady has a child with SB, so I know that she will be awesome. I had asked for either her or another lady from my church, so I'm pleased that I was able to get someone I know. Maddy will have therapy twice a week. I'm happy about that now, but if I get overwhelmed, we can back off. I just want her to have every opportunity to be as mobile and independent as possible.

Ok, I'm done rambling. Hope you all are enjoying the same absolutely beautiful weather we're having!

Monday, September 15, 2008

Random picture update

Helping Daddy water the plants
This is the dress that Carli wore home from the hospital, one of my favorites.
Growing up. I love how she crossed her leg.
I think this was the first time that Maddy sat in her Bumbo seat.
Olivia got into my lipgloss. She obviously applied it to more than just her lips!

Tummy time. By the way, look how much better her shunt looks! If you look back at previous posts, you'll see how the fluid was pooling around it, so it looked really swollen.

Maddy was a bit grouchy tonight, so I tried the bumbo seat to see if she wanted to sit up. I don't think it worked!

And stay tuned to Glen's blog ( for a guest post from his brother Keith, who had the privilege of meeting Governor Palin. I'll leave it to him to give you all the details, but this wasn't just a huge impersonal rally, but a one-on-one encounter with the lovely lady. We had him on speaker phone less than an hour after the meeting, and I declare, he sounded more giddy than I'd ever heard him before! Of course we're all jealous! :)

Monday, September 8, 2008

I'm one proud mama!

Just a quick post this time, but I have to brag on my kiddos (I was just going to write about Carli, but I decided to include all of them, since they've all accomplished things in the last few days).

Madeline: Wowed the First Steps evaluation team with her upper body strength, especially in holding her head up when on her belly. She also rolled over to her back, though she's been doing that for a while, but they were impressed that she did it without the use of her legs. Oh, and have I told you that she's been sleeping through the night for a couple weeks now?!!!

Olivia: May be potty trained in a year or two! No really, she has done a little bit better this time round. She actually has "gone" twice, which is a miracle for us, since she normally sits without anything happening! She continually cracks us up with her new-found vocabulary, too.

Carli: Amazed mommy and daddy tonight during our Bible story. While I was reading away, she pointed to a word, and said, "That says 'God.'" And sure enough, it did! After another minute or so, she pointed to another one and said, "Adam!" Two for two! And then "Eve!" I'm loving this. She's about ready to take off, I think!

Ok, that's all the bragging for now. Have a good night!

Thursday, September 4, 2008

Carli's 5-year-old pics

I got a special offer for Olan Mills this time, and it's a different set up online. With Sears, I could save them to my computer and post them online. Anyway, if you would like to see Carli's pics, go to >>online store>>portraits>>view and order online. Enter order number 2208-22738-5 and last name asbury. Enjoy!

Tuesday, September 2, 2008

Pictures Later, update now!

How is it possible that so much time has passed since I last provided an update? Thanks so much for your patience! It's been busy, busy, busy around here! My camera needs charged, but I thought I'd at least give you a brief run-down of what's going on in our little family.

Glen: Full-steam ahead with his second master's degree, besides teaching and his "regular" job. Poor guy hardly has any relaxing time at all, but I think that he'll be a student forever, regardless. He just loves being a student.

Me: Learning the ropes of having three kids, learning to cook again, and doing a lot of entertaining recently. We had two families over on Friday, a friend on Saturday, Glen's family for Sunday dinner, and six friends for snacks on Sunday night. BTW, thanks to one and all who brought meal for FOUR weeks after we left the hospital. You'll never know how much it meant to us.

Carli: Full-day kindergarten started this week for her. Her school has switched completely to full-day, instead of it being just for the kids who are struggling. She seems to be really enjoying it. Of course, they've just been reviewing letter recognition and sounds at school, but the review has really helped and she's sounding out words and spelling others much more quickly even than before. At the supper table, it's incredibly fun to me to spell a word and have her sound it out so quickly, and see that light come into her eyes when she "gets it." She's totally enjoying baby sister Maddy and helping mommy in the kitchen, etc. We've been working on Scripture memory, the days of Creation, and "This is my Father's World," and she has amazed me with how fast she learns. Last night when she was praying before bed time, she included, "Praise God that you created light on the first day. Praise God that you created sky on the second day!" etc. It was so sweet!

Olivia: This week started potty training in earnest for Olivia. The poor girl got left by the way side a bit with Madeline's birth. If any one would like to take over the task, I wouldn't mind! :) I've been enjoying having some more one-on-one time with her while Carli's at school. I've been trying to work on colors with her. I love to hear her talk--her sentences are finally getting quite a bit longer! She brightens up our world.

Madeline: (FYI, her name is pronounced Mad-e-line, not Mad-e-lyn) Maddy is more alert each day. This week has been slow in so far with drs appointments, until Friday, when she sees an ENT doctor. The sleep study showed that she has two kinds of apnea. She had several times when she did indeed stop breathing, which caused her O2 saturation to drop. They are hoping that the ENT will find something that may be causing the obstructive apnea. They will probably put her on meds, too, for reflux, and that could help the apnea. In the mean time, they've had me bump up the oxygen to 1/4 liter from 1/8. We're blessed that so far we've not had to take her back to the hospital. Please pray with us that the apnea can be resolved. Other than that, we're doing ok. First Steps comes next week to do their initial evaluation, and then from there, we'll write her plan.

Well, if you've made it this far, thanks for hearing me out. I guess daily updates might be better as far as length!

Thanks to everyone for your continued love and support and prayers! We feel it!