Monday, September 28, 2009

What works for Carli

I love finding tips for any and everything on the blogs I follow, specifically ones that make homeschooling to run as smoothly as possible. I've discovered something that helps Carli concentrate and actually enjoy flashcards for blends, arithmetic and lots of other facts that need memorized. It started one day when Carli's eyes were glazing over--I wanted to get done, but I didn't want her to hate it either. I got her personal-sized white board out, and told her to take score: One point for Carli when she got a flash card right and one point for Mommy when she got it wrong. She was like a different person, and she quickly caught on that she couldn't just look at part of the fact and guess--she had to know the answer to get a point.

Since then, we've used the basic idea in many different ways: hangman, building towers with blocks, and bar graphs, for instance. It makes it a lot more fun, and quicker, too, since I'm not trying constantly to bring her back to the matter at hand.

I'm very excited that school is going as well as it is: You know how it can be for a first time home educator. Carli is learning quickly, and now can read bigger words with special sounds using one- and two-vowel rules very well. She told me today that she was going to read her primer all day on Saturday so she can learn lots.

In other news: Olivia told me the other day that she needed to talk to my ear. Trying to stifle my giggles, I asked what she needed and she said, "I need to go to the store and buy some eggs." What could a 3-year-old need with eggs?? :)

Maddy started speech therapy last week, and I'm super excited about it. Since it involves all play, signing, singing and reading, I think she likes it, too.

Even in the valley

Our choir will be singing "Even in the valley." It's one of the songs that brings back memories of the emotions I was experiencing when we found out what was going on with Madeline, before she was even born. I couldn't find it as an option to add to my playlist, so I searched on youtube for it. I found the Whisnants singing it, and added the link below. It's more Southern Gospel-style than our choir-fied (yes, I know that's not a word!) version, but I think you'll appreciate the words if you are going through a difficult time.

Monday, September 21, 2009


Pics posted below of Maddy in her new chair! The chair is adjusted as small as it goes, but the rep is going to cut out a piece so that her kyphosis will fit it, and then her whole back will be flat on the chair. She's slumping a bit now because of the curve, but then she does that no matter what she's in.

FYI: This is like Christmas for Mommy, and when they were making all the adjustments, it was like when you take hours to put stuff together on Christmas! :) She's sleeping and eating in it now, as we speak. It tilts AND reclines, so she's nice and comfy.

Saturday, September 19, 2009

Home again!

Just in case you're not on facebook and hadn't heard, we are home from the hospital as of last night. We took a short detour to have a quick supper with Glen's brother (who got to hold Maddy for the first time ever, and yes, Maddy flirted up a storm with him), and then home to figure out this new situation of ours.

Maddy is still happy and doing well. Mommy, on the other hand, is trying to figure out how to keep the vesicostomy from leaking all over the casts while I change/cath her. Oh, and last night the g-tube wouldn't flow, and didn't until after I called the nurses' line and was waiting for a call back. I still don't know why. It wasn't clamped, and it wasn't backing up like she wasn't tolerating the feed. It just wouldn't flow. Even though I was sitting right beside her, I didn't notice until the formula filled up the syringe and overflowed. Grrr.

I spent the day getting ready for company--Glen's cousin and her husband, from Colorado, are coming any minute. I'm glad I had some extra time to clean, though Glen had kept up the house the best he could while I was gone, thankfully. Anyone want to come tackle my fridge, though??? How does it get so messy? I wipe it out more frequently than ever now, but stuff spills from who-knows-where, and you know what, I'm too pooped to care at the moment. Maybe next week.

Oh, and speaking of next week: Monday is an exciting day for us. Besides getting to visit with Uncle Keith for a few more hours, we also are getting Maddy's first wheelchair! It's not one that she will wheel herself, but it's going to help her so much in sitting up straight, freeing her to play and enjoy life from a whole different vantage point.

Monday is also exciting because I will find out who my mentor is going to be. I know that there are many prayer warriors who have been praying for months over who should be matched with whom, and I'm excited to see what God has in store for me--I know that I have much growing to do, and that I have a lot to learn about continually deepening my walk with Christ.

Thursday, September 17, 2009

Pictures of the lovely pink casts (and Maddy, too, of course)

I was able to get Maddy up and dressed today, and she's happy as a clam (how happy, exactly, are clams, by the way??), talking and grinning and signing "Mama." I snapped some pictures with my camera phone--they're a bit blurry, but you can get the general idea! She's down to one IV. Her Mic-Key (feeding tube button) is "up to burp" right now. You can see tubing attached to an open syringe in the picture. The reason for this is that it's alleviating any pressure on her stomach, which is newly wrapped around her esophagus. Once she begins to tolerate her more normal feeds, we'll only hook her up to an open syringe 15 minutes before and for 30 minutes after her feeds. It literally burps her! :)

Oh, and we got switched to PediaSure today, so that she will be getting all the micronutrients that a 14-month-old girl should be getting.

Thanks for your prayers and many emails, FB messages and phone calls! We will tell her often how much support and love we have received through each of her battles and in between as well.

Tuesday, September 15, 2009


Madeline is resting in her room now. This is the most relaxed I've seen her after a surgery, but she's doing really well, without a lot of pain meds. We're currently trying to save an IV that keeps occluding. Jenny, our nurse, has been taping and retaping trying to save it.

Maddy came through her surgery with flying colors. I can't see the ear tubes, obviously, but she's currently sporting two IVs with arm boards, a brand new g-tube, several laparoscopic incisions, a funny-looking vesicostomy complete with a Foley catheter until tomorrow, and two bright-pink casts from hip to toes. They match her toenails, by the way.

We were blessed to have my Aunt Pam and Uncle RB as well as Marcia Carnes and Pastor Kraig to keep us company while we waited. Auntie came bearing many fun surprises, including an adorable nightie that she made for Maddy. I only had one nightie, bought last night, and I knew we'd need one since jammies won't fit over the casts. Auntie took an adorable brown and pink onsie and added addorable polka-dot material and a big bow to make it an adorable nightie. The one from Target is awesome, but not nearly as cute as the one from Auntie!!! :) I've heard rumors that she has material for one more, now that she knows it was the right size.

I'll keep you updated when possible. I won't have a computer beginning tomorrow, as Glen will have this one with him, and mine is in the shop. Thank you all for your prayers! They mean the world to me.

Saturday, September 12, 2009

Of surgery and kidneys

This Saturday finds us trying to get everything in line for next week. Besides just trying to get things together for a few days in the hospital, I'm trying to do a few of the extra things that don't get done on a daily (weekly!) basis since Glen's cousin Fern and her husband Allen will be here next Saturday night through Monday morning, and Glen's brother will be in town for training as well. We are very excited about seeing them all, but as you can imagine, I am wondering what my house will look like by the time I'm in the hospital with Maddy for a few days. We talking about switching out one night, if she's still in the hospital on Friday.

In the mean time, while I hate it that Maddy has to have to be in the hospital at all, I am definitely looking forward to some quiet time in the hospital! It's crazy busy in the hospital, especially in PICU, but there's no cleaning to be done, AND, I'm done with my schoolwork for another month. So I can play with Maddy, visit with all the hospital personnel, and READ. (Oh, and catch The Office on Thursday night!)

You may have seen on FB that Madeline has had a new procedure added to the list. So now it's a five-in-one: ear tubes, feeding tube, Nissen (wrapping the stomach around the stomach), vesicostomy, and bilateral club foot correction.

If you're not into urology, you may want to skip this paragraph. What? No one left??? Ok, I'll just pretend this is Madeline's medical journal. Madeline's nuclear kidney scan on Thursday produced some interesting results. The test was supposed to show kidney function. They gave her nuclear medicine through an iv, and then watched the blood flow through the kidneys. Very good news on that front. Her kidney function is just fine! So why the continued hydronephrosis (swollen kidneys) that we keep seeing on ultrasound? Why this little wonder has a horseshoe kidney. Normal kidneys are positioned like this, like tipped teacups. A horseshoe kidney, a congenital anomaly, occurs when the kidneys are rotated and fused to look like a horseshoe. This causes them to fill quite a bit more before spilling, thus causing them to appear swollen. Nothing really needs to be done for this, but it's interesting to know. This morning, I had a sudden flash of brilliance. Dr. Cain said that it wasn't related to spina bifida. BUT, I wondered, is it related to DiGeorge syndrome (a.k.a. 22q11.2 deletion syndrome)? DiGeorge is the chromosomal syndrome that Madeline has that they think caused the spina bifida (a very rare presentation). It's main presentation is usually major heart issues, and thankfully, that is not the case with Maddy. She has the characteristic facial features (low-set ears), immune system deficiencies, hypocalcemia (resolved now), possible hearing loss, severe dysphagia (swallowing difficulties) and suspected submucosal cleft palate. And look at this link for DiGeorge, and what do you see??? Horseshoe kidney!!! :) I should be in the medical field.

Ok, if you're still with me, we're doing one last paragraph about Maddy's lovely little plumbing system. She has grade IV-V reflux from the bladder to the kidneys (vesicoureteral reflux). The pressure is significant and could cause damage in the long run. Vesicostomies were standard course 10 or 15 years ago. Now urologists recommend aggressive catheterizing to try to combat the reflux. Madeline is one of the few for whom Dr. Cain believes this surgery is necessary. The vesicostomy brings a little of the bladder through the abdomen to empty directly into the diaper. This will stop the reflux to the kidneys, and we won't have to cath her anymore. Obviously Maddy won't want to be in diapers for life, so in a few years, when she's ready to learn to cath herself, Dr. Cain will most likely perform surgery to give her two stomas, one to flush the bowel and one to cath the bladder, right in her side so that she'll be able to be independent (and in a much better social situation). I am in love with Dr. Cain. He treats me like I'm smart enough to understand what he's saying, appreciates my questions and takes his time with us. On top of that, Dr. Cain has literally written the book on stomas in spina bifida kids. He teaches the procedure around the world and is currently filming about it. We feel very blessed to have him on our team.

Ok, Glen is wanting the computer back (mine is in the shop). Please continue to pray for Maddy during this next week--that she will tolerate the anesthesia well, that she will heal quickly, and that we will not pick up any infection, flu, etc, while we're in the hospital. The reason why we're piling on so much at once is that we definitely don't want repeated hospital stays during flu/RSV season, and of course, every surgery with anesthesia presents risks. We are having Madeline anointed on Sunday morning regarding these concerns, and we are grateful that we can put her in our Father's hands.

Monday, September 7, 2009

Madeline Kate--14-Month Pics

So I'm the horrible mom who didn't get my third child's pictures taken until she was 13 1/2 months. I have lots of excuses, of course, but in the end they fall a little flat, and I'm very mad at myself for not doing it sooner.

It was a little bit more complicated with Maddy. The night before I pulled her feeding tube and all the tape (except for the oxygen), so that her cheek wouldn't be red in the morning. In the morning, I put the tube back in, with just an eensy-weensy bit of tape. End result? Her cheek was still red. Oh, well. I knew that might happen, but if I would have waited til after her surgery, when she wouldn't have a feeding tube/tape to deal with, she would have scars on her belly from the Nissen procedure and g-tube placement, not to mention casts to her hips to correct her (adorable) feet. It's all about trade-offs, I guess. I took the oxygen off for her pics, and she stayed a nice healthy pink. I'm sure her SATs were dropping a bit, but she wasn't laboring to breathe, so I just left it off.

Anyway, we got some awesome pics! These are just the orginals, but Sears zoomed or cropped where necessary to make them even cuter!