Wednesday, December 9, 2009
Tuesday, December 1, 2009
That's right....I was reading Job.
Ok, I know that I'm no Job, he of the renowned patience (though he did rail at God quite a bit, frustrated for what he saw as punishment that he didn't deserve)--I've lost patience with my children, reveling in the "do justly" part without balancing it out with the "love mercy." I have, on more occasions than I'd like to admit, allowed myself to sleep in instead of getting up to start the day right with quiet time. And I could go on, but you get the picture.
Except for Grace. Because of His sacrifice for me, I have been cleansed. Because of His power I live each day trying to be like Him.
Suppose that God had a conversation with Satan a few years ago, and that I was the topic, rather than Job. Satan tells God that the only reason that sing His praises, crave His presence, teach my children to love Him, is because He has built a hedge around me. He'd blessed me with a loving Christian family, a Godly husband, two beautiful and healthy children.
Thankfully Satan didn't orchestra every piece of property and both children taken, turn my husband against me and send "friends" to stare at me for 7 days before telling me that the only reason all this had happened because of sin. Instead, he tried steal my faith by introducing my family to the realities of life with a little girl with DiGeorge Syndrome, spina bifida and wide circle of other problems. To round out the year, he took my much-loved father, much too young.
Maybe it wasn't Satan's doing. Maybe it's "just life" in a fallen world, but Satan's scheme is to use it to put a wedge between me and my Creator.
At any rate, I have to admit that I'm still working through why God would allow Daddy to die at age 55. But if Satan wanted to use that to shatter my faith, sorry (or not), not happening. If anything, it makes me more determined.
But I am echoing Job's sentiment when it comes to Madeline Kate. "What did I do to deserve this??"
What did I do to deserve waking up every morning to her sweet smiles; to her grin when she raises her arms to say, "SO big!"; to feel her little hand patting my face; to see her eyes light up when I ask her if she wants to sing "One little fishy"? What did I do to deserve seeing her delight when her sisters love on her or her Daddy coos at her? What did I do to deserve watching how God is already using her little life to bless and inspire so many? What did I do to deserve that she signs mama and says daddy? What did I do to deserve Madeline Kate?
So to the enemy of this child of God, I say, "Your mission failed." And to God, my Rock and Shelter, "How can I keep from singing Your praise? How can I ever say enough? How amazing is Your love! How can I keep from shouting Your name? I know I am loved by the King, and it makes my heart want to sing!"
Tuesday, November 24, 2009
Thursday, November 19, 2009
Have you prayed about the difficult or challenging situations in your life? Make sure you've taken care of any wrong motives, unforgiveness, or unconfessed sin in your life. Then prepare a banquet for the Lord through a genuine outpouring of your love in the form of thanksgiving, praise, worship, adoration, and a lifestyle that says yes to Him in word and deed.
This is how you make sure you pray His will instead of merely your wants while also seeking His face as your First Love rather than merely your First Source.
That thought has been challenging to me ever since I read it. The difference between First Love and First Source is all the difference in the world, isn't it?
Tuesday, November 17, 2009
Monday, November 16, 2009
Of course, Maddy got her casts off, and her braces made and fitted (and re-fitted, which unfortunately caused her first pressure sore. Yes, that made be sick in my stomach. Unfortunately, I hear it's not uncommon when braces are first adjusted, and since Maddy can't feel anything from at least her waist down, there's no way for her to tell me. Needless to say, we're watching the sore like a hawk, and it is healing, although it does take a while. And this is turning into the longest parenthetical statement in my blogging history.).
We also visited the ENT doctor. Now that the (turquoise) tubes are in the adorable little ears, he wants to go ahead with an ABR (Auditory Brainstem Response) test to make sure that she has no hearing loss. With the tubes, we're definitely not seeing any signs of it, but since she isn't babbling much at all yet, they'd like to make sure that we're not missing anything.
The neurologist simply bumped her Keppra (seizure medication) to match her weight. They will do another EEG when she's been on the medicine for two years.
The pulmonologist has scheduled another polysomnogram (sleep study). I don't have a lot of hope for weaning her off oxygen since her SATs continue to drop when she's off O2, but at least we'll be able to make sure that things haven't gotten worse.
Now for some really good news!
First--On ultrasound, Maddy's kidneys (I should say kidney since her kidneys are fused into one horseshoe kidney!) are 75% better since her got her vesicostomy! The vesicostomy was needed because the reflux to her kidneys was severe enough that it was causing hydronephrosis. The vesicostomy is an attempt to take some of the pressure off the kidneys. We assume that she still has the reflux, but now there isn't as much to reflux into the kidneys, since her bladder is constantly draining into her diaper (THAT'S RIGHT! NO MORE CATHING!!!) Dr. Cain was hoping for 50% better one month out from the surgery, so 75% is awesome! He expects that by her next visit her kidneys will not be swollen at all.
Second--Madeline's cell function tests came back from Mayo Clinic. Due to her DiGeorge Syndrome, her T-cells have been just a bit low, not enough to cause major concern. Dr. Belcher tested the cell function, to see how they fight off infection, and they are functioning at 100%. This means that Madeline most likely doesn't have the terribly suppressed immune system common in most DiGeorge Syndrome kids. And since she doesn't have the heart problems associated with DiGeorge, her issue is "only" the spina bifida. We're still trying to keep Maddy away from anything nasty, but this was very good news to say the least.
I must get back to my schoolwork....Only 9 more days to go and I'm done, Done, DONE!!
Thursday, November 12, 2009
We were very thankful to have Glen's parents and sisters with us for the dedication. I wished that my Mom could have been there, and I especially missed Daddy since he had dedicated his other four grandchildren.
Scroll down to the bottom of the page to pause the music that is already playing on my blog. And then....Enjoy!
Monday, November 2, 2009
Anyway. Scroll down to the bottom of the page and pause the playlist and then watch this charming little clip! And thanks, Jed, for sharing.
Thursday, October 29, 2009
Waiting in the lobby for someone, anyone, to call her name! She was entertaining everybody.
Nurse Mike very carefully begins to cut through the bright pink casts.
Not so happy about having to be on her belly!
Peeling away the layers
Both feet unwrapped!
Compare the first picture to this one!!! See how straight?
The butterfly bandages are still on, complete with a lot of dried gunk.
See the pins? 6 total: 3 in each foot.
Stellan McKinney turns 1 today. After a nice long stint with no SVT, he is in the hospital and not doing well at all. Please join me in praying for little Stellan and for his family. You can read his whole story at www.mycharmingkids.net.
Stay tuned for pictures of Maddy's casts coming off, her newly straightened feet, and braces!
Saturday, October 24, 2009
Monday, October 19, 2009
Tuesday, October 13, 2009
Thanks to Linda Kokinda for two more cool sites for teachers/parents/kids: abcteach and SoftSchools. I like mixing it up for Carli instead of the same things day in and day out, and these can help with the endless reviews.
Off to get the kids out of the tub, quick clean up of the girls' room and schoolroom, fold laundry, start Maddy's feed and breathing treatments .......................................... Why are there still lists of things to do at almost 9??? I think instead of To Do lists, we should make things of all the many things we accomplish through the day...then we would see our fantastic amounts of hard work and pat ourselves on the back instead of thinking "but I didn't get it all done....." Sound like a plan?
Monday, October 12, 2009
LISA S.* gave me some flashcards for Madeline--touch and feel animals that Maddy likes a lot. Today, I kept showing her the dog flashcard and saying and signing dog over and over. Then I introduced bear with the sign. Then I started asking, "Where's the dog?" and over and over, Maddy would pick the right one, even after I'd mix them up. Ok, I know most of you are thinking that I'm being overly excited about something so small, but for us this is huge! I'm so excited to see Maddy catching up slowly but surely. It's like watching a flower blossom, and I love it.
In other news, LISA B.** gave me a great website for spelling fun. It's www.spellingcity.com, and you can type in the spelling list and they can play games or take practice tests with them. Carli loved it. Her first time on tonight, she just played "Which one?", choosing the right word to complete the sentences. Now that she's reading quickly and without a lot of help, I don't have to stand over her shoulder to help her, and even though it's basically the same thing she does on her worksheets, she likes the diversity of using the computer.
*Lisa Myers Sommers, in WV, friend dating back to teenage years.
**Lisa Bryant, in IN, who is a new friend who never lets me live it down that I once put Lisa Sommers' name in CAPS on FB. Hence, so as not to hurt any feelings, every Lisa gets equal-opportunity CAPS. :)
***I should clarify that Lisa B is not really that sensitive, but a great tease for someone so old. HeeHeeHeeHee.
Monday, September 28, 2009
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.
Monday, September 21, 2009
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
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
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
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
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
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!
Sunday, August 30, 2009
Thursday, August 27, 2009
Tuesday, August 25, 2009
You get the drift, and even though she was a room and a half away, I just couldn't take it any more. So in a classic move that MckMama would call "armchair parenting," I called out to Carli, "PLEASE, stop arguing!" The response? "I'm not arguing--The boy Barbies are arguing." Me--"Please have the Barbies stop arguing and talk politely."
Ever obedient (*smirk*), this is what I heard next: "Gentlemen! Gentlemen! Please stop arguing over who is going to marry me!"
I about fell off my chair laughing, and I'm laughing now!
Monday, August 24, 2009
Wednesday, August 19, 2009
We're in Merrillville, IN, near Chicago. Glen is doing a candidate evaluation meeting, while the girls and I hang in the (very nice) motel. They are going a little stir crazy, though, waiting anxiously for Daddy to come back and take them swimming! I'm enjoying looking at all the curriculum. The other workbooks were delivered today at home, and Lisa B. picked them up for me so they wouldn't get too soaking wet! Can't wait to lay my hands on those!
Tuesday, August 18, 2009
Correction: She had to go without anything in her tummy until 11. Because at 11, they fed her barium water through her NG tube, so that they could check her anatomy and reflux. Still a funny little curve in the duodenum, which is important for Dr. Kokoska to know before he starts the surgery.
Glen is back safe and sound from Pittsburgh and the Right Online conference. He thoroughly enjoyed himself and gathered lots of information and buddies.
Thanks to Jed and Alyssa for offering to take the girls Saturday while I worked frantically to get the house whipped into shape after the tornado called a paint job swept through. As mentioned in a previous post, while I was busy painting, and then the next morning while I took Maddy to the doctor (urologist--joy, oh, joy!), the kids pretty much destroyed any semblance of neatness--discovering long-forgotten toys, and not having a lot of room to play in it. And it was so hot outside, that we didn't force them out in it. So it was a big blessing that J & A took the little ones for a while. They played in the park, swam in the kids pool, had supper and baths, and when they came back, they handed over miniature key lime pies. That's what I call a friend!
Friday and Saturday, I moved furniture back into the school/nursery/play room, rearranged furniture in the girls room, and put a LOT of junk away. Still have a bit to do, and I'm saving the best til last: hanging all the school things up and organizing it all.
I'm like a kid at Christmas, waiting on my first of two boxes from aBeka! The first box should arrive today and contains the parent kit. The one to be delivered tomorrow has all the workbooks that I hadn't yet found unused on ebay.
Sunday was a crazy busy day for me. First, Glen was still in Pittsburgh, so I got us all ready and to church on time, though not soon enough for me to sing with the choir. Then I skeedaddled after first church, to run home and change Maddy and me into less dressy clothes before heading down to Zionsville for the Annual NICU reunion picnic. I took Susan and Annie Claire along. Annie is a little friend of Maddy's. She also has spina bifida, but she also had open-heart surgery. She's so adorable.
It was a lot of fun to see several people that worked with Maddy in those 17 days in NICU, and lots of other miracle babies too. AND it was stinkin' hot. Just so you know.
Sunday night, we had church in the park. It was a huge victory for us to be able to do it, because when Pastor Leeder first contacted the city for permission to use the stage for our church service, he was told, yes, but no Scripture reading or preaching was allowed. As a church, we banded together to pray that God would work it out, and the city relented and gave us free reign! The choir sang several numbers as a prelude, and then we had our normal Sunday night service. Pastor was hoping for 500, and I was hearing rumors that there were about 600, though I haven't heard the official count. We're hoping that seeds were planted in the hearts of those that came by.
Ok, now for pics! These are still from April and May.
It takes a long time to get Olivia to look at the camera!