Thursday, December 25, 2008

Merry Christmas!

Just a dropping a line to wish you a very Merry Christmas. Maybe some of you have noticed that I didn't get cards out this year. Just too crazy and stressful this year, and that was one thing I cut. (Notice I didn't tell you this before now, in hopes that you'd still send me notes from your family!)

We're having a good time so far, first with Benjy and Lisa Sommers, then with Glen's brother Wayne & family in VA, along with his parents, and now with Mom and all the Cessna side of the family here in PA. We're so blessed to have a wonderful family who we can actually stand to be around for a while! :) We are missing Daddy a lot. Not very much time goes by without someone saying, "Like Daddy used to say..." or "Remember when Daddy..." or "Daddy would want us to..."

Hopefully one of these days I'll have time to upload some pictures! (Nothing like trying to bait you into coming back!)

Merry Christmas and Happy New Year!

Wednesday, December 17, 2008

How people live---at Christmas.

There is a famous person whose name begins with "O" (:-) who says that she loves to see how people live. I'm rather the same way. Especially since I know what I love, but don't know how to or have the money to make it translate to my world. Anyway, if you'd like to take a Christmas Tour of Homes, head on over to BooMama's site (Click here). As I type, there are 813 participants, and I could spend way too much time admiring everyone's decorations. There are some really talented people out there!


Friday, December 12, 2008

Now that's easy

I'm getting ready to go finish up my Christmas Shopping. Even though I'm done with the girls, I asked Olivia what she wanted for Christmas, and it appears that I could have saved some time and money. She wants a peanut butter sandwich. Something tells me that she doesn't quite understand Christmas yet.

Monday, December 8, 2008

Not Me Monday

Well, I've decided to join MckMamma for Not Me Monday! As I type this, there are 256 others who have joined in the fun this week. To view un-confessions of lots of other moms, click here.

--I definitely did not get behind on my house work this last week. Oh, no. Not me. Being the extremely organized person that I am, I stayed on top of everything so that my house was in pristine condition by the time I was done with a day in Indy for a doctor appointment and urodynamics study for Madeline plus some Christmas shopping; therapy; two choir practices; three performances; one after- program party at Joyce's; and one sick little baby. See, I'm good like that. Doesn't matter how busy I am, my house is always perfect. I do not still need to clean up the laundry explosion. (Thanks to my awesome hubby that kept it going, though!)

--I have not wished for Mary Poppins to pay me a visit and snap my house into said pristine condition.

--I did not accidentally leave the baby wash bottle beside the couch after I did not give Madeline a sponge bath instead of a real one before one of our concerts. The wash did not spill all over the carpet (like half the bottle) and I most certainly did not spend over a half hour scooping bubbles off the floor. The said floor most certainly does not have baking soda sprinkled all over it, because it most certainly does not reek of stale water.

--I love my friend too much to make her take care of my sick baby while I sang in the program. I am such a good mother, that I would forfeit countless hours and days and weeks of choir practice just to sit and rock my baby and totally miss out on singing with everyone. (Thanks, Lisa B. for all your help this weekend)

--I did not make a huge batch of gingerbread dough only to find out that I didn't have a gingerbread man cookie cutter. I did not overindulge and eat way too many gingerbread bears.

--I did not eat the last serving of Joyce's heavenly BBQ brisket, at her get-together on Friday night. And I definitely did not have seconds of the Next-best-thing-to-Robert-Redford dessert! (Who names these desserts??? I had a dear friend and pastor's wife give me a "Better-than-sex Cake" recipe a few years ago. By the way, R*****, it's always a hit whenever I serve it!)

--My middle child is not so naughty as to stick a marker in her ear and color away. She did not have one bright blue ear and one bright pink one, the latter of which made Lisa B. and Cindy think it was bleeding inside her ear.

--And finally, I most certainly was not proud of Carli for looking so beautiful and being so cute as she sang with the other children. And I most certainly did not almost tear up when Nathaniel (a darling little boy with spina bifida) sang "What can I give Him?" and I definitely didn't cry through the last half of choir practice on Wednesday because I was missing Daddy.

So what did you not do this last week? Head on over to MckMamma's for complete instructions if you would like to join in on the fun!

Thursday, November 27, 2008

So much to be thankful for

Even though it's been a tough year, I have a lot to be thankful for.

We started the year out in eager anticipation for a healthy new baby, and though we we were so overwhelmed with the news that Madeline would be born paralysed and many other complications, she has been such a blessing to us already. She's had relatively good health and few scares, and I'm grateful for that.

Daddy leaving us was the absolute hardest thing that I've faced this year, but even that provides us much to be thankful, especially that we know where he is and that he no longer has to deal with the stress and problems of everyday life.

We are so grateful for all of our friends and family and church family that have stood beside us through the thick and thin of this year. Glen and I are ready to move on from being the needy ones to helping others, but thank you so much for your patience with all of our drama. Hopefully this next year will only include one surgery (on Maddy's feet), and that everything else will be smooth sailing!

Thank you, Glen, for allowing this year to draw us closer together rather than apart, and for being a man close to God's heart and his family.

And could a mother ask for any sweeter little girls?? They're the love of my life.

What part of Thanksgiving are you?

Thanks, Lori, for the fun little quiz....

I'm not sure if this is good or bad.

You Are Pumpkin Pie

Even when people are full - they make room for you.

Good or bad, your smell is most likely to arouse a man.

Wednesday, November 26, 2008

The little patient.

Now how cute is this? I love her little hospital gown.....

One picture shows the incision site, the other the IV in her scalp (ouch!).


I know some of you may not like pictures like this one, and I am usually one that doesn't, but I love this picture of the oldest grandchildren at the funeral home. They started out all holding hands in a somber line right in front of the casket. Jordan overheard Carli telling the littler ones that Granddad had a new body now and this was just the old body.

Here is a snippet of another conversation I heard during our stay and Mom's:

Carli: I wish Granddad was here. It will be forever, but we'll see him sometime. First he got sick, and then he died, and then he went straight to heaven.

Brianna: First he had a heart attack.

Carli: Ok. First he had a heart attack, then he died, and then he went straight to heaven. We just have to be really strong for Granddad.

Almost every time she prays, Carli says, "Help Granddad to be safe in Heaven, and help Granny not to be sad that he's in Heaven with Jesus."

All settled in

We are settled in our room now for the night, and Dr. Young thinks we should be out of here by tomorrow morning, hopefully bright and early! The surgery revealed a clogged catheter causing the problem. They were able to go into the same incision as the first shunt placement surgery, and as a mommy who wants as few scars as possible on her baby, that made me really happy. Of course, it looks just like it did in the beginning...bummer, since the scar was virtually invisible already.

So we're heading for some FOOD, since Maddy is sleeping soundly. What is it about sitting in a hospital that makes me ravenous???

We may go to Kentucky afterall tomorrow or Friday. But first, Mom is being such a hero to us by fixing us a Thanksgiving meal so that we don't miss out on the food aspect of the holiday. :) But we have much to be thankful for: the surgery went well, no unexpected problems, Mom being here, and just as importantly, we have definite signs of what to look for if this ever happens again (the most obvious ones being very firm fontanelle, very prominant scalp veins, and "sunset" eyes). She looks so much more normal and I'm so excited.

Thanks for your prayers.

Tuesday, November 25, 2008

Surgery tomorrow

Hi to all of you faithful Madeline fans!

Well, here we go! Obviously Maddy didn't realize that it's Thanksgiving Week or she may have chosen better timing to cop a shunt malfunction, but oh well. Maybe the hospital cafeteria will serve turkey! :D

Over the last few weeks, Maddy began to exhibit some signs of shunt malfunction, but over the last week, she began changing very quickly, especially with the very full fontanelle, fever, gap in the suture line, very prominant scalp veins and the onset of "Sunset eyes" (downward deviation), indicating a shunt malfunction. I took her to Dr. Tuchscherer today, and he took me very seriously (Thanks!) and sent her right away for a CT scan. Yup, hydrocephalus again (and aqueductal stenosis, possibly). So they have her scheduled for emergency surgery tomorrow to relieve the pressure, etc. We're praying for the typical one night stay for this type of surgery.

So I have the "joy" of sending my baby off to anesthesia again, much before I was ready to (I was hoping for the next time to be for her orthopedic surgery to correct her *adorable* clubbed feet).

I'm so thankful that Mom is here to help with Olivia and Carli, and I know that she's glad that she wasn't stuck in PA when this all went down. She's not going to have much of a Thanksgiving though.

Please keep us in your prayers. Obviously, the most important thing is that she get help immediately, but it sure is a downer to have to change our plans to get away to Kirk and Heather's for Thanksgiving weekend.

Ok, when I typed that I felt bad instantly, because I'm thinking of all the other little babies that have been in the hospital for months. Giana Grace was born the week after Maddy and is still in the hospital, with three little brothers waiting at home. We've been blessed to have no problems up to this point. So I'm thankful.....

Monday, November 24, 2008

Check out Kayla's blog

My sister-in-law Kayla has updated her blog with a wonderful post about Daddy and lots of pics too. She said it better than I ever could. Hopefully someday I'll be able to start sharing my memories.

Anyway, please go visit Kayla at

Sunday, November 23, 2008

Even in the valley, God is GOOD!

Another favorite song of mine. We sing the choral version at church, but here are the Whisnant's singing this beautiful and very meaningful song:

Even In The Valley - The Whisnants

Thursday, November 20, 2008

Another song about Heaven

I know you're probably sick of me posting songs, but it's amazing to me how songs just seem to minister to me in a way that nothing else can. Here's another Brooklyn Tab song that we have sung. Again, it has taken on a whole new meaning to me.

Wednesday, November 19, 2008

Close to tears with this song

We're singing this song in choir on Sunday morning. It has been very meaningful to me ever since I first heard it a few years ago, and now I just about can't hold back the tears when we sing it. Now more than ever I need HIM to be the "lifter of my head." If you've never heard "Thou, Oh Lord" by Brooklyn Tabernacle Choir, please watch this the whole way through. You don't get the full blessing of the song with just 10 seconds! :)

Monday, November 17, 2008

At some point...

....I will write about Daddy's funeral, etc, but for more detail about the events of the last 10 days or so, please visit Glen's website (

Until I write more, here's a song to tide you over. I love "haunting" songs. I first heard this one sung by my Sunday School teacher. I actually put it in my will as a song for my funeral. :D

(Oh, and if anyone could tell me how to post the actual clip to my blog instead of just the link, I'd appreciate it. It has other options, such as myspace or facebook, but nothing for Blogger.)

Thursday, November 13, 2008

Finally Home

I don't have time to write about every little detail of the last few days, but here are some pictures that we found for the slide show at Daddy's viewing. No particular order.

June 20, 1975: Granddad and Grandma Cessna, Mommy and Daddy

Daddy with cousins Madeline and Daniel (two weeks apart)

In Wolf Summit, WV, with first grandbaby Carli

Granddad with Brianna (my brother's girl), Olivia and Carli.

Granddad's girl

Daddy and his childhood sweetheart

I think he looks a bit like Madeline here.

Proud Granddad holding Brianna Lynne (right beside proud daddy Jordan)

On of my parent's favorite places to go for a romantic getaway. Photographing the sunrises and sunsets became a passion of Daddy's. I hope to find share some of those pics soon.
Welcoming Olivia Grace to this world
Daddy was famous for his homemade pizza (he taught me well!). Carli loved "helping" him get it just right.
I'm not sure if this is California, Virginia or New Jersey. (Mom, do you know?)
Making big bubbles for Carli (Indiana, PA)
Granddad's angels, Brianna and Olivia (six weeks apart)

This is one of my favorite pictures. Memorial Day picnic, 2006.

Saturday, November 8, 2008

Daddy's in Heaven.

I'm too drained to string too many sentences together, so I'll post more at a later date.

Go to for an amazing perception of Daddy in Heaven.

Thanks, Melanie.

Tuesday, November 4, 2008

Happy Autumn!

Posting pictures is more exciting now than watching the election.

These pictures are random from the last month, and they mostly speak for themselves.

So we went to the zoo on an absolutely beautiful day, hoping for some really beautiful pics. Since Carli is so into taking pictures these days, I let her have the camera. This is the last one she took before she dropped it over the edge of the seal display, down in the ditch in an inch of water. The zookeeper rescued it for us. We got no more pictures, but we only had to replace the battery. Ah, well. I love taking the girls to the zoo because every time, things are different, and they never tire of it. This time we laughed ourselves silly watching the baboons fight over their little ones. And one of the kangaroos had a joey in her pouch, a first for the kids (maybe me too).

We took the kids trick-or-treating to a few neighbors before heading over to the Fall Festival. My royal princess wouldn't look at me for a picture.

I ended up taking off Carli's headband later in the evening. I actually thought the headband made her look more like a hippie rather than an Indian.
Yep, I dressed up! I was a mommy. :) I wasn't planning on a costume for Maddy, but Lisa B. brought me a pumpkin blanket for her, so I wrapped her in that for a while. Better than nothing! I wish I would have taken pics of friends of mine. They were spaghetti and meatballs. Brent was a box of spaghetti, their little girl Callie was a meatball, and Lyndsi was Preggo, very adorable since she's pregnant.
Look at those eyes!!! Looking a little strange.
Adorable, candy in the teeth and all.
After hearing the plan of action for Maddy's foot surgery (at one year), I realized that I've grown to love her little feet, weird angles and all. They're so tiny and adorable! So I snapped several pics. The second one, is with Carli's hands and is my favorite.

I got my wrap! Carli wanted to try it.

Sacked out in the Bumbo seat. Guess she decided to use her head wrap as a eye mask.


Just a quick update to let you all know that Madeline is up to 8 lb 10 oz today! I didn't write about the one appointment on the 21rst when she weighed the exact same thing she did 8 weeks previously. We were so frustrated, but Dr. Escobar upped her calorie intake (he was thinking that it was nutritional, not GI related, possibly because of her chronic lung disease--she was burning more calories while working to breathe), by adding a very expensive ($130 per small can) formula to her milk. (He said it's pre-digested! What in the world???) And it worked! It was such a struggle. She refused the bottle for a few days, taking only about a half ounce, maybe an ounce very three hours. But she's doing much better with it, and I'm so happy. I'm also happy that Dr. Escobar has given me samples of the pricey formula, as well as a prescription for it, to see if insurance will pay for it.

So all in all, a good day for us. Now if we can only get the election results we want.....

Tuesday, October 28, 2008

Prayer for Baby Stellan

Tomorrow is the big day for Baby Stellan to make his appearance. I've been following "MckMamma's" blog over the last few months. Not only is she one of the best bloggers of all time, but she is in real need of prayer tonight and tomorrow. Her fourth child has a severe heart condition, and according to previous posts, he has only about a 50% chance of living. But there are thousands and thousands of people praying for this precious baby, and with God there are no percentages involved. Please breathe a prayer for Stellan. I know how much your prayers meant to me as we brought Madeline into the world.

To view more details and read MckMamma's hilarious blog, go to There's a "Stellan Name Gallery" on the side of the page that will show you just how many people have been praying for him over these last few months. And check out her "Not Me Monday" posts. I usually laugh out loud when I read them.

Tuesday, October 21, 2008

Mini appointment marathon

Thank you for your prayers for Maddy. She still sounds bad, but her fever has broken, so hopefully, that's a sign that she's on the way to getting better.

Today we had three appointments, and here's a brief summary:

Orthopedic surgeon: Very impressed with Dr. Didelot. I didn't tell him that Dr. Escobar thought that I should see the spine surgeon first and that the spine doctor would probably be the best. After the appointment with Didelot, I think I just may allow him to be the one to do her spine surgery when it's time. He's a pediatric doctor, for one, and I was much more comfortable with him. At any rate, Maddy will have her clubbed feet corrected at one year old (9 more months!), providing she's doing well in weight, etc. Even though she has absolutely no movement in her legs and will not walk (unless there's a miracle, medical or otherwise), the surgery will allow her to wear shoes and braces for using a stander. Surgery to correct the kyphosis will happen after she's two at least. Until then, she's too small for the rods that will be used to straighten her out. I'm so excited, though, to have a game plan, even if it is a way out.

Renal ultrasound: revealed that her kidneys are a bit swollen, possibly from the vescicoureteral reflux. There wasn't an ultrasound of her kidneys while she was in NICU, so we don't know if this is new or not.

Urologist: Dr. Cain came to Indy specifically to help kids with SB from St. Vincent's and Riley Children's. On some kids he performs surgeries to aid them in keeping dry when they're old enough to be out of diapers. Sure beats a bag for life! :) He is scheduling a urodynamics study to see how well her bladder is working (or not) so we can see how much we need to cath her per day and how closely need he needs to follow her right now.

So all in all a good day! I got one paper written last night, submitted around 3 AM, and one more to write tonight. Tomorrow we have developmental therapy, and I'm going to a little fall party with Carli's class. Choir practice tomorrow night, providing Maddy's feeling better (have to try out my new wrap that hopefully is coming tomorrow!!!!). Carli has off Thursday and Friday for parent/teacher conferences. We're making hay while the sun shines, as my mother would say, and going to the zoo while we're down in Indy for Maddy's appointment with the neurodevelopmentalist. Then maybe I can sleep!!!! :) Only one more workshop left in this course (Strategic Management---UGH!!!), and then I'll be back to my beloved accounting!!!

Love you all, thanks for your prayers and support!

Sunday, October 19, 2008

First ER visit

Well, another "first" for us! I've never had to take my kids to the emergency room before, but I made my first trip today with Madeline. She developed a nasty cough and ragged breathing and a low-grade temp. Because of her high risk factors, I didn't want to just put it off and see if she'd improve on her own. So this morning I called the on-call doctor through our doctor's office, and he agreed that I should have her checked out immediately. I was very grateful that the ER doctor didn't blow me off. He'd worked at Riley Children's and had worked with kids with DiGeorge syndrome before, so he knows that things can escalate quickly if not treated aggressively. We were there for 3.5 hours, and they did blood work and a chest x-ray (with absolutely no tears on either count!). She has an acute upper respiratory infection. The x-ray showed clear lungs, and the blood work did show that she is fighting the infection pretty well, given her lower T-cell counts. He gave her a pretty strong antibiotic injection and a prescription for oral antibiotics. I'm hoping that she'll start to feel better soon.

If you think about it, please pray for my baby.

Wednesday, October 15, 2008

A little of this and that

I don't know of any other time in my life that time has flown by as fast as it is right now. At this rate, Carli will be in college tomorrow.

And here's what's going on in our life. (I'm adding more detail than some of you need, but I have lots of new readers!)

Glen: Glen is keeping busy with his "regular" job (recruiting adjunct faculty for IWU), teaching (in adult learning programs with IWU), and working on his second masters degree (Liberty University). And of course, the current politics have him on pins and needles. I think he'll miss it, though, when it's all said and done. :-) And he's singing in a quartet this Sunday evening, and he recently had a solo backed by the choir, band and flute. It was absolutely gorgeous, and of course, I'm so proud!

Pam: I've been enjoying every spare minute with my little girls, although those are more rare than a few weeks ago. I'm deep into a Strategic Planning course, one of the core courses for my BSA program. I'm ready to get out of this class and move on to accounting (I think advanced accounting). I'm a gal that really needs her sleep, and between the schoolwork, house work, taking care of my little ones, and especially Maddy's last cath around 12:30 or 1, I've been averaging about 6 hours of sleep at night. I know, I know. At least Maddy sleeps through the night, and I don't have to get up in the night to feed the baby, like most mommys, but most days I feel on the edge of exhaustion.

I am participating in a young mom's Bible study, and we are currently using the book Power of a Praying Parent. I've really benefited from this focus a lot, and it's made a real difference in the way I pray for my children.

I have an exciting weekend ahead! Thursday night, I am joining my Aunt Pam and cousin Melanie for a fun evening at a Taste of Home show. And then Marcia Carnes from church is hosting a young moms sleepover. She's had it on her heart for some time to open her home and heart to us. (As a side note, my mom and grandma would love Marcia--she uses her good dishes every day and sets a beautiful table!! ) Sounds like I'm taking Maddy with me, since Glen is rather panicked about learning to cath her and keep up her routine of feedings and medicine, etc. Marcia suggested it, and I'm just hoping the other ladies don't mind. Fortunately, she's a very good baby, and I imagine I would have really missed her. So for two evenings anyway, I'm going to pretend that I have no schoolwork or housework that needs attention!!!!

Carli: Carli is still loving school. She's stayed on green (good behavior) every day so far, and she loves telling me this every day when she comes home. Today she had an all day field trip to the pumpkin patch, and I was so bummed that I couldn't go along, due to some previously scheduled doctor appointments for Madeline. She is reading more and more every day. Her recent list of words included a lot of color words, and she's gotten to where I can just spell it (rather than showing her the words), and she can tell me what word it is. She sounded out "Little House in the Big Woods" the other day (did I already tell you this??). I've enjoyed going into the classroom to read to the children as often as possible.

Olivia: Where do I even start with Olivia. She cracks us up. I don't remember hanging on to Carli's every word like we do with Olivia (that's a bit of hyperbole for you). Maybe it's because she started talking so much later, but I love listening to her. Yesterday morning she crawled into bed with Glen for a few minutes (I think he was blissfully unaware--dead to the world), and then she came out with eyes gleaming and said, "I sept lith Daddy...isss morning!" I about died laughing at her. She paused before saying "iss morning" (this morning) like she was going to try out this new phrase to see how it sounded. She spends a lot of time making messes while mommy tries to clean or do schoolwork or feed Maddy. (Anyone with ideas on teaching a two year old how to get only one toy or set of toys out at a time, please let me know. Oh, and the plan will be useless to me if it means that I have to have her pick up every five minutes. I don't have the time!!)

Madeline: Madeline continues to delight my heart. She's in that really adorable stage when she just looks around at everything. She's starting to give the slightest hint at a smile. Like Olivia talking, we've been watching with baited breath for the smiles since they've been slow in coming. A very sneaky and absolutely wonderful lady from church put some money in my diaper bag tonight to buy a wrap, and I can't wait to use it, especially here at home. She's my first cuddler, and I love every minute of rocking her.

We continue to struggle to put weight on Maddy. She's only gained one pound since birth. The doctors haven't swept it under the rug, so to speak, but one of the best doctors that I have has said that we can't expect her to be in the middle of the chart with everything she has going on. She did refer me to a GI doctor for a possible swallow study (she still chokes quite a bit when eating and has pretty bad reflux), and she mentioned that the next step would be a feeding tube through the side to the stomach that would allow her to get more calories while still getting the benefit of breastfeeding without the risk of choking on fortified milk in the bottle. Obviously we would rather her just gain weight the normal way, but we're open to this option if necessary. What's interesting, though, is the same day I heard this, I met a lady at Chick-fil-a whose grandson has CP. She told me a bit about the spine surgery that he had, probably similar to what Maddy will have eventually, and also that the feeding tube that he had placed was the best decision they'd made. She told me this without me even starting to get into Maddy's story, so she had no way of knowing that this was something that had been mentioned. I'm sure that his will be more permanent, given his condition, but I've been told this wouldn't have to be a permanent situation for Maddy. Of course, I have yet to see the GI doctor, and he may have a different ideas. Please pray that we'll know what to do. Oh, and for those who have been wondering, until the reflux issue is resolved (Zantec didn't seem to make much of a difference, so we're trying Prilosec), we will not be taking Maddy off of oxygen.

Madeline had her first developmental therapy session last week. She seemed to really enjoy the one-on-one time with Erynn, who'd I already met a few months ago. Erynn also has a son with spina bifida, and she was so excited to add a baby with SB to her caseload. We start occupational therapy in a couple of weeks.

Ok, here's some pictures!

Erynn (DT) working with Maddy in the Bumbo seat
(Please excuse all the cords. We have a lot due to oxygen and monitor)

Maddy trying to figure out what Oliva's doing
Maddy after bath. You can see the pretty severe curvature
(kyphosis) on her lower back
Adorable new school dress from Granny
Glen took this picture on his cell phone at a friend's house.

Friday, October 3, 2008

A thought-provoking quote

The following is the daily literary quote on iGoogle:

If you only have one smile in you, give it to the people you love. Don't be surly at home, then go out in the street and start grinning "Good morning" at total strangers. --Maya Angelou

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! :)