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 http://www.mycharmingkids.net/. 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