Maddy had her upper GI yesterday, and she did so well! She had to have been hungry, poor thing--because her mother is not so hot on a short night of sleep. She was supposed to have no food after 7 a.m., so I got up at 6:15 to feed her. I had the new bag of food mixed up the night before so that I could just plug her in quickly. So I gave her the four meds, hooked her up and set my alarm for 35 more minutes of blissful sleep. When I went in to disconnect her and cath her, I noticed that she was hooked up to the old bag. Yet the new bag was hooked to the pump. And the medicine was still in her tube. And I could not find where the formula had gone! No wet spots anywhere. I am still really confused about that! To make matters worse for the poor little girl, I couldn't just run it again, and she had to go without food until 11.
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.
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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.
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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.
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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.
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Ok, now for pics! These are still from April and May.
It takes a long time to get Olivia to look at the camera!
Tuesday, August 18, 2009
Sunday, August 16, 2009
How 'bout some pictures, people??
So I was just looking at how long it's been since I posted a picture catch-up. I've gotten pics up through March, and then Carli's b-day in July, but nothing in between. So I'll start on the April/May ones.
First, here is a prime example why I quit using the apnea monitor. It was rarely alarming, and if it did, it was only one beep and then done! The home monitor patches caused such alarming break-outs, and it would break my heart. She would just dig and dig at it, and nothing I tried worked to clear it up permanently, since I had to put the monitor back on at night. This must have been right after getting home from the hospital in March because she has three patches on her belly from the hospital leads, though they aren't as bad. You can see her multiple IV marks, too. Anyway, Dr. Akanli ordered a pulse oximeter for me to spot check her oxygen levels, and that is so much nicer. For one thing, the apnea monitor only went off when her oxygen levels got very low and she stopped breathing momentarily. The pulse ox alarms before it gets that low.
First, here is a prime example why I quit using the apnea monitor. It was rarely alarming, and if it did, it was only one beep and then done! The home monitor patches caused such alarming break-outs, and it would break my heart. She would just dig and dig at it, and nothing I tried worked to clear it up permanently, since I had to put the monitor back on at night. This must have been right after getting home from the hospital in March because she has three patches on her belly from the hospital leads, though they aren't as bad. You can see her multiple IV marks, too. Anyway, Dr. Akanli ordered a pulse oximeter for me to spot check her oxygen levels, and that is so much nicer. For one thing, the apnea monitor only went off when her oxygen levels got very low and she stopped breathing momentarily. The pulse ox alarms before it gets that low.
I love her studious look here.
When Madeline was first learning to wave.
Mischievous
Enough of the headband!
Friday, August 14, 2009
Schedule SOS
Since I love my loyal readers, I will spare you all I learned about bladders, kidneys and ureters on our visit to Madeline's urologist yesterday. I'll just leave it at this: Swollen kidneys; agressive, but not to aggressive, dealing with it; Ditropan t.i.d. (bladder relaxant three times a day); cath 4 x day (we were doing three); UTI not gone; new antibiotic t.i.d.
So anyway, I was just writing Maddy's new schedule--here's today's:
8:30 cath
9:15 all meds (now 4, plus she has a fever, so Advil too)
9:15 feeding pump (first feed, I mix everything up, get a new bag, etc, so it takes a bit longer).
12:15 feeding pump
1:30 cath
3:15 two meds
3:15 feed
6:15 feed
6:45 cath
9:15 all meds
9:15 feed
12:00 feed/cath.
On Monday/Tuesday/Wednesday she has therapies, and I need to incorporate a little therapy every day on my own. We rarely get through a week without at least one doctor appointment. She was just approved to add Speech therapy. We've been approved to feed baby food and drink from a nosey cup. She sometimes is on a breathing treatment schedule.
So this is an SOS to anyone who homeschools and/or has a child with special needs. I need ideas on putting together my days, especially when we start homeschooling in a week or two. I am doing Abeka with Carli, and it shouldn't take all day, but I would like to add some structured/creative activities for Olivia too. I can start Maddy's schedule a little earlier so that I'm not trying to do breakfast, start homeschool and do all the beginning of the day stuff with Maddy.
I'm super excited to get started, but if anybody has any ideas for me to organize my days, including morning routines, I'd appreciate it! I love structure, but this is stretching my brain a bit. I know it's not more than most of you deal with--babies just take work, toddlers need entertained during homeschool. But it's all new to me! Help!
So anyway, I was just writing Maddy's new schedule--here's today's:
8:30 cath
9:15 all meds (now 4, plus she has a fever, so Advil too)
9:15 feeding pump (first feed, I mix everything up, get a new bag, etc, so it takes a bit longer).
12:15 feeding pump
1:30 cath
3:15 two meds
3:15 feed
6:15 feed
6:45 cath
9:15 all meds
9:15 feed
12:00 feed/cath.
On Monday/Tuesday/Wednesday she has therapies, and I need to incorporate a little therapy every day on my own. We rarely get through a week without at least one doctor appointment. She was just approved to add Speech therapy. We've been approved to feed baby food and drink from a nosey cup. She sometimes is on a breathing treatment schedule.
So this is an SOS to anyone who homeschools and/or has a child with special needs. I need ideas on putting together my days, especially when we start homeschooling in a week or two. I am doing Abeka with Carli, and it shouldn't take all day, but I would like to add some structured/creative activities for Olivia too. I can start Maddy's schedule a little earlier so that I'm not trying to do breakfast, start homeschool and do all the beginning of the day stuff with Maddy.
I'm super excited to get started, but if anybody has any ideas for me to organize my days, including morning routines, I'd appreciate it! I love structure, but this is stretching my brain a bit. I know it's not more than most of you deal with--babies just take work, toddlers need entertained during homeschool. But it's all new to me! Help!
Thursday, August 13, 2009
The story of my life
....er, my day. As in today, not just any old day.
Besides taking care of kiddos:
1) Quick pick up.
2) Empty nursery/playroom/schoolroom into the hall, master bedroom, kids' bedroom, living room and kitchen. Very neatly. For the most part.
3) Kids completely destroy house as they discover forgotten toys as I drag all the stuff from the aforementioned room.
4) Lovely therapy session for Maddy with Erynn.
5) Wasted $23 of paint when I opened my van "trunk" and the first can of paint toppled out and pretty much went "splat" on the driveway.
6) Did not waste time crying.
7) Wanted to.
8) Got three old towels and mopped up as much paint as possible.
9) Shoved the mess into a trash room.
10) Kept hoping the neighbors weren't laughing at me.
11) Next door neighbor came home and only said "hi".
12) While I was blushing furiously.
13) Hosed down the driveway.
14) Hoped that the few remaining stubborn splatters wouldn't look too....redneck.
15) Went to Lowes to buy more paint.
16) Tried to keep my rowdies from spilling lots more paint all over Lowes.
17) It wouldn't have surprised me if they would have.
18) Answered "yes" to at least a dozen queries from middle child about whether or not I had a paint brush.
19) Bribed children to a zillion different ways to stay out of the room so I could paint.
20) Loved the color.
21) Worried about the color.
22) Hated the color.
23) Just about cried when I painted over the names Daddy had written on the wall when the older girls were born.
24) Is the orange really a school bus yellow.
25) Yuck.
26) Carli, PLEASE don't come in this room one more time.
27) I said GO.
28) Butterflies and names still showing through.
29) Was I supposed to paint the edges first or the wall first?
30) Wish I could ask Dad.
32) Jordan is ignoring his sister's desperate plea for help.
33) Oh, good, Mom knows something about painting.
34) I'm doing it right....whew.
35) Really hating the color.
36) Back is spasming (is that a word?).
37) DONE!!
38) I never want to paint again.
39) 1/2 hour getting paint off of me so that Dr. Cain won't think I'm too trashy when I take Maddy into Indy at 9:30...this morning. Oh, boy.
40) Next time I'm hiring Melanie.
41) LOVE the color.
42) Oh, no one cathed Maddy???
43) Blog.
44) Did a tornado come through my house???
45) I really got it all done today?????????????
46) Yeah me!
47) How long will it take me to put everything back?
48) Not tonight!
49) zzzzzz
Besides taking care of kiddos:
1) Quick pick up.
2) Empty nursery/playroom/schoolroom into the hall, master bedroom, kids' bedroom, living room and kitchen. Very neatly. For the most part.
3) Kids completely destroy house as they discover forgotten toys as I drag all the stuff from the aforementioned room.
4) Lovely therapy session for Maddy with Erynn.
5) Wasted $23 of paint when I opened my van "trunk" and the first can of paint toppled out and pretty much went "splat" on the driveway.
6) Did not waste time crying.
7) Wanted to.
8) Got three old towels and mopped up as much paint as possible.
9) Shoved the mess into a trash room.
10) Kept hoping the neighbors weren't laughing at me.
11) Next door neighbor came home and only said "hi".
12) While I was blushing furiously.
13) Hosed down the driveway.
14) Hoped that the few remaining stubborn splatters wouldn't look too....redneck.
15) Went to Lowes to buy more paint.
16) Tried to keep my rowdies from spilling lots more paint all over Lowes.
17) It wouldn't have surprised me if they would have.
18) Answered "yes" to at least a dozen queries from middle child about whether or not I had a paint brush.
19) Bribed children to a zillion different ways to stay out of the room so I could paint.
20) Loved the color.
21) Worried about the color.
22) Hated the color.
23) Just about cried when I painted over the names Daddy had written on the wall when the older girls were born.
24) Is the orange really a school bus yellow.
25) Yuck.
26) Carli, PLEASE don't come in this room one more time.
27) I said GO.
28) Butterflies and names still showing through.
29) Was I supposed to paint the edges first or the wall first?
30) Wish I could ask Dad.
32) Jordan is ignoring his sister's desperate plea for help.
33) Oh, good, Mom knows something about painting.
34) I'm doing it right....whew.
35) Really hating the color.
36) Back is spasming (is that a word?).
37) DONE!!
38) I never want to paint again.
39) 1/2 hour getting paint off of me so that Dr. Cain won't think I'm too trashy when I take Maddy into Indy at 9:30...this morning. Oh, boy.
40) Next time I'm hiring Melanie.
41) LOVE the color.
42) Oh, no one cathed Maddy???
43) Blog.
44) Did a tornado come through my house???
45) I really got it all done today?????????????
46) Yeah me!
47) How long will it take me to put everything back?
48) Not tonight!
49) zzzzzz
Wednesday, August 12, 2009
Just a little
Ok, I reread the post below, and man, it's a little melodramatic, isn't it? Oh, well, it was 2 in the morning, and it was truly how I was feeling, so I guess I'm not going to apologize for it. But in case you haven't read it, don't say I didn't warn you. I mean, if the title "Late-night confessions" didn't already give you the heads up. I'm just saying.
Late-night confessions
I am not a bitter person. I do not feel angry at God for giving me a child with severe disabilities. I am ever grateful to have Miss Madeline in my life. For her, I do wish that she could have use of her legs and not struggle with lung disease and the many other complications that are a ripple effect from spina bifida. For my sake, I don't wish anything to be different, because through this precious little girl, God has worked miracles in my life and has blessed me abundantly. And when I am tempted to worry, my Scarlet O'Hara personality kicks in, and I just think, "I'll worry about it tomorrow." Better yet, why worry at all. I can't see the big picture, but I can handle today, with God's help.
Except just now. My late-night confession is that I was just now cathing Maddy and changing her diaper, and I scooped her up to cuddle her little diapered body before putting her pjs on. Just the way my arm covered her severe kyphosis (hers is almost a v-shaped curve in just below the middle of her back), I could see how awesome she'd look with her back perfectly straight. I even switched arms so that I could look at the side of her face with only the oxygen tubing and not the feeding tube and all the layers of tape besides. Try as I might, I can't remember holding my other girls and appreciating the perfection of their little bodies. I'm sure I did, but I can't remember. I think Maddy's little crooked feet are absolutely adorable, especially when the tiny nails are freshly pedicured (not professionally, mind you--just mommy love!), but for some reason I've never gotten used to looking at Maddy's back. Probably because it's a huge issue for her--she doesn't lay flat on her back (in midline), she cannot sit up tall and straight or for long periods of time. I just wish that I could make it all better for her and I can't.
Ok, enough of that, and I feel better now that you let me share that. I hope that I haven't scared all my readers off with pure honesty. At any rate, the song that is running through my head right now is one our choir sings (beautifully I might add!). I like the second verse especially: "Some midnight hour, if you should find you're in a prison in your mind: Call out His name, defy the chains, and they will fall in Jesus name! I bless your name....." I think I'll move that one up on my play list so you can listen and enjoy while your reading this. If you're on the hunt for some meaningful songs through difficult times, here are some more that I love: Larnelle Harris singing "If not for the storms"; "Something Happens (when I mention your name)"; "How can I keep from singing your praise?"; "Untitled Hymn (Come to Jesus)"; Steve Green's "Be at rest"; "So you would know" and "Thou, oh Lord" by Brooklyn Tabernacle Choir; "Who can satisfy?"; "Revelation 19"; David Phelps singing "No more night"; and so many more. Music is a balm straight from God, I've come to believe. I'll never forget singing "How can I keep from singing your praise" with the choir the Sunday after we had the ultrasound that altered our lives forever, and I just felt praise bubbling til I couldn't stop the tears streaming down my face. And just thinking about it is turning my wishful/sad/I'm-very-tired tears into happy tears once again. God is good.
Good night, my friends.
Except just now. My late-night confession is that I was just now cathing Maddy and changing her diaper, and I scooped her up to cuddle her little diapered body before putting her pjs on. Just the way my arm covered her severe kyphosis (hers is almost a v-shaped curve in just below the middle of her back), I could see how awesome she'd look with her back perfectly straight. I even switched arms so that I could look at the side of her face with only the oxygen tubing and not the feeding tube and all the layers of tape besides. Try as I might, I can't remember holding my other girls and appreciating the perfection of their little bodies. I'm sure I did, but I can't remember. I think Maddy's little crooked feet are absolutely adorable, especially when the tiny nails are freshly pedicured (not professionally, mind you--just mommy love!), but for some reason I've never gotten used to looking at Maddy's back. Probably because it's a huge issue for her--she doesn't lay flat on her back (in midline), she cannot sit up tall and straight or for long periods of time. I just wish that I could make it all better for her and I can't.
Ok, enough of that, and I feel better now that you let me share that. I hope that I haven't scared all my readers off with pure honesty. At any rate, the song that is running through my head right now is one our choir sings (beautifully I might add!). I like the second verse especially: "Some midnight hour, if you should find you're in a prison in your mind: Call out His name, defy the chains, and they will fall in Jesus name! I bless your name....." I think I'll move that one up on my play list so you can listen and enjoy while your reading this. If you're on the hunt for some meaningful songs through difficult times, here are some more that I love: Larnelle Harris singing "If not for the storms"; "Something Happens (when I mention your name)"; "How can I keep from singing your praise?"; "Untitled Hymn (Come to Jesus)"; Steve Green's "Be at rest"; "So you would know" and "Thou, oh Lord" by Brooklyn Tabernacle Choir; "Who can satisfy?"; "Revelation 19"; David Phelps singing "No more night"; and so many more. Music is a balm straight from God, I've come to believe. I'll never forget singing "How can I keep from singing your praise" with the choir the Sunday after we had the ultrasound that altered our lives forever, and I just felt praise bubbling til I couldn't stop the tears streaming down my face. And just thinking about it is turning my wishful/sad/I'm-very-tired tears into happy tears once again. God is good.
Good night, my friends.
Thursday, August 6, 2009
Thrilled!
Exciting news on the Madeline front! She signed "Mama" over and over today! No verbal talking yet, but I'll take what I can get! She's also started waving with only verbal "Hi" and "Bye" (in other words, without us waving at her), and today, when someone asked her where Mama was, she reached up and touched my face. And another time, same question, she kind of pointed in my direction (only with her whole hand) and grinned! Can it be that I finally have a Mama's girl???
On the medical front, we are finally getting closer to a g-tube surgery. On August 17, she has a pre-testing (upper GI) and we should find out this week what day the actual surgery is on. It's going to be a 4-in-1 surgery: g-tube (feeding tube directly into stomach), Nissen (wraps the stomach around the esophagus to create a valve to limit reflux and aspiration of reflux into lungs), ear tubes, and bilateral Talipes Equinovarus correction (both clubbed feet corrected). I want to get a photo session in of just Maddy's feet before then. Color me crazy, but I totally think her feet are adorable.
So that's the news from Lake Wobegon, er, Kokomo. Stay tuned for pictures, sometime within the next few weeks! ;)
On the medical front, we are finally getting closer to a g-tube surgery. On August 17, she has a pre-testing (upper GI) and we should find out this week what day the actual surgery is on. It's going to be a 4-in-1 surgery: g-tube (feeding tube directly into stomach), Nissen (wraps the stomach around the esophagus to create a valve to limit reflux and aspiration of reflux into lungs), ear tubes, and bilateral Talipes Equinovarus correction (both clubbed feet corrected). I want to get a photo session in of just Maddy's feet before then. Color me crazy, but I totally think her feet are adorable.
So that's the news from Lake Wobegon, er, Kokomo. Stay tuned for pictures, sometime within the next few weeks! ;)
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