Praise God! Neely is doing better and everyone is healthy and happy this year. Merry Christmas to all our friends and family!
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Friday, December 24, 2010
Merry Christmas to all!
Praise God! Neely is doing better and everyone is healthy and happy this year. Merry Christmas to all our friends and family!
Posted using BlogPress from my iPhone
Tuesday, December 21, 2010
Cell Phone Photos
I'm on the plane back to Little Rock and thought it'd be a good time to update with some recent pictures.
Mary Lawrence on assembly line throwing in mac and cheese mixes at our church's annual Christmas food packing drive. She loved it!
Mags watched in her stroller!
-going to church! It's still just Justin or me taking ML to church since we still can't take Maggie. Hopefully in the Spring we can start!
My sweet nephews (secret to making them go to sleep: put them in their Buzz Lightyear sleeping bags.)
Maggie getting ready to be covered in casting stuff (seems like paper- at Scottish Rite. I wanted to take a photo of her all casted up but thought that would be a tad cruel.
This is what my child looks like after being fitted for a brace for 3 hours today. Torture!! (And it didn't even fit right in the end so we have to go back!)
This is what my three year old looks like at the end of that appointment. She got so mad at the prosthetics lady bc Maggie was screaming so much. "Stop! She doesn't like that!" she yelled as she tried wiggling between Maggie and the awful looking brace.
More to come...
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Mary Lawrence on assembly line throwing in mac and cheese mixes at our church's annual Christmas food packing drive. She loved it!
Mags watched in her stroller!
-going to church! It's still just Justin or me taking ML to church since we still can't take Maggie. Hopefully in the Spring we can start!
My sweet nephews (secret to making them go to sleep: put them in their Buzz Lightyear sleeping bags.)
Maggie getting ready to be covered in casting stuff (seems like paper- at Scottish Rite. I wanted to take a photo of her all casted up but thought that would be a tad cruel.
This is what my child looks like after being fitted for a brace for 3 hours today. Torture!! (And it didn't even fit right in the end so we have to go back!)
This is what my three year old looks like at the end of that appointment. She got so mad at the prosthetics lady bc Maggie was screaming so much. "Stop! She doesn't like that!" she yelled as she tried wiggling between Maggie and the awful looking brace.
More to come...
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Monday, December 20, 2010
Update
So happy to report that Neely is doing better today. She's on heavy antiobiotics to fight infection. They are monitoring her closely for that reason. Hopefully the worst is over, the doctor said. That's our prayer, too.
Sunday, December 19, 2010
Sunday
Neely is not doing well today, high fever and pain, most likely an infection but they are doing tests to find out more. Please pray for wisdom for the doctors and complete healing. Also for her husband, Patrick, who has not left her side at the hospital and hasn't slept for days.
I flew back to Dallas this morning and am aching to be back. Might have to fly back tonight.
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I flew back to Dallas this morning and am aching to be back. Might have to fly back tonight.
- Posted using BlogPress from my iPhone
Saturday, December 18, 2010
Neely, part 2
Neely is doing better today. She's going to be ok after two procedures yesterday to help
her. She's still in pain, but manageable pain. She'll be in the hospital a few more days recovering, but I knew she was on the mend when I walked in today and she was a) conscious and b) said in a whispered voice, "Is that sweater from Anthropologie?". Yes, it is, I said, and I got it from your closet.
Anyway, I feel so blessed to be able to spend such quality time with her boys. When you live out of town, it's visits like these that really cements your bond with children. Her boys are so precious- I wish we just lived right down the street and not five hours away!
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her. She's still in pain, but manageable pain. She'll be in the hospital a few more days recovering, but I knew she was on the mend when I walked in today and she was a) conscious and b) said in a whispered voice, "Is that sweater from Anthropologie?". Yes, it is, I said, and I got it from your closet.
Anyway, I feel so blessed to be able to spend such quality time with her boys. When you live out of town, it's visits like these that really cements your bond with children. Her boys are so precious- I wish we just lived right down the street and not five hours away!
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Friday, December 17, 2010
Neely
My sister has been suffering all week from a rare complication of the gallbladder removal surgery she had Monday. She's back in the hospital for the third time this week and has been in excruciating pain that not even morphine helps. I came last night from Dallas to help take care of her three boys. She'd probably be embarrassed if she knew I was writing about her on my blog. Even still, I humbly ask all you prayer warriors out there to remember Neely and Patrick tonight in your prayers...
Ever since I sat down in the terminal last night - waiting anxiously for my delayed plane- I have felt such a heaviness on my chest. It's like the Enemy is smothering me with a pillow and I'm gasping for breath, my hands flailing in the air for help...I've not yet succumbed to the lack of oxygen, but feel I am almost there.
Why, Lord, must my family keep suffering so? Why is this happening to my sister who has already endured so much? My poor mother who has watched both of her daughters suffer such physical pain?
I am praying for complete healing for Neely, wisdom for her doctors, and strength for my family. Thank to all for letting me share this with you.
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Ever since I sat down in the terminal last night - waiting anxiously for my delayed plane- I have felt such a heaviness on my chest. It's like the Enemy is smothering me with a pillow and I'm gasping for breath, my hands flailing in the air for help...I've not yet succumbed to the lack of oxygen, but feel I am almost there.
Why, Lord, must my family keep suffering so? Why is this happening to my sister who has already endured so much? My poor mother who has watched both of her daughters suffer such physical pain?
I am praying for complete healing for Neely, wisdom for her doctors, and strength for my family. Thank to all for letting me share this with you.
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Thursday, December 16, 2010
Pump it up!
Funny story - Maggie's feeding pump runs constantly at 39 ml/hour (which is a little more than an ounce an hour). Last night in a slumber I accidentally set the pump to 391 ml/hour! How in the world I have no idea! I woke up so confused an hour later when the alarm ran to tell me the pump was already empty again. Poor little thing! I know that was quite a shock to her system to be pumped up like balloon full of milk like that!
We did go back to Scottish Rite last week and the doctor willingly acknowledged he doesn't know why Maggie's neck is so bad. He said he'd like to take things slow because of that and assured me that scoliosis would not be a problem for her. He promised me that Maggie would not graduate from high school with her neck like that. Not sure if that is good enough, I told him, but if that's the only option then that's what we'll do. And after some pushing from me, he agreed to do a brace that Maggie's OT had suggested. So we spent five hours at Scottish Rite meeting with him, the PT, getting pictures taken and being casted for a brace. Fun, fun.
Then two days later we went to a craniofacial plastic surgeon. After looking at her medical records, he simply said that it makes total sense to him that her neck was not able to stretch properly in the womb and that is why it is so bad. (What I've been saying all along!). He said he could do surgery cut the muscle (to lengthen it) and then could put on a soft collar for 6 months and hopefully that would help her. He said it would be much less traumatic than the brace Scottish Rite is making and he said he would be very worried about scoliosis. Hmm...what am I supposed to think or do when two of supposedly the best doctors in Dallas totally disagree in their treatment plans?
We were supposed to go to the neurosurgeon yesterday but the surgeon had an emergency surgery and had to cancel, so we postponed until the 31st. I am anxious to get his thoughts on her neck, her spinal cord, and to see if there are any other missing pieces we have not thought about yet. Once we talk to him, we can get a game plan going for Maggie's treatment.
On a different note, we did go for a weight check this week and I was so frustrated to hear that she hasn't gained any weight in the past two weeks - what?!! How can that be?? She is hooked up to the pump constantly and now I am even taking out the backpack pump and attach it to the back of her stroller when we go out (I'm sure people will give us strange looks!). But I mentioned to the dietician that Maggie is now sitting up for almost 30 seconds by herself! And she is standing and holding on to things with a little help (thanks to her awesome Occupational Therapist). Finally she is starting to do some more physical things, but that of course means she is burning more calories, which explains why she is not gaining weight. I was hoping to start weaning her off of the 24 hour feeds now that her stomach has gotten used to 39 ml/hour. But since we have to increase her feeds to 45 ml/hour, the continuous will have to continue. G-tube babies are a fine science to figure out!
Today we are going to get her second RSV shot - called Synagis. Preemies/CLD babies get this antibodies shot once a month during cold/flu season and boy am I thankful for them. It is not a vaccine so it won't prevent her from getting RSV, but if she does get RSV hopefully it won't be bad enough that she would have to be hospitalized or put on a ventilator. I panicked on Tuesday - exactly 30 days after her last shot-because the clinic called and said they didn't receive her shot from the manufacturer. So the past two days I have been so paranoid about taking Maggie out and "Purell-ing" everyone that gets near her! But we're off this morning to get it and I know Maggie is not going to be happy. Usually she doesn't mind shots but this thing is huge!
Sorry for all the boring medical updates - I do thank you all for praying. I have to say, now that Maggie's reflux is under control (which will probably start back up now that we are increasing her feeds!) she is much more delightful. She still hates the car and screams constantly in it, and she is still frustrated because she can't crawl or walk and really wants to. But other than that, she is hysterically funny with her huge four new front teeth and giggles with joy and lifts up her arms every time I walk near her...
We did go back to Scottish Rite last week and the doctor willingly acknowledged he doesn't know why Maggie's neck is so bad. He said he'd like to take things slow because of that and assured me that scoliosis would not be a problem for her. He promised me that Maggie would not graduate from high school with her neck like that. Not sure if that is good enough, I told him, but if that's the only option then that's what we'll do. And after some pushing from me, he agreed to do a brace that Maggie's OT had suggested. So we spent five hours at Scottish Rite meeting with him, the PT, getting pictures taken and being casted for a brace. Fun, fun.
Then two days later we went to a craniofacial plastic surgeon. After looking at her medical records, he simply said that it makes total sense to him that her neck was not able to stretch properly in the womb and that is why it is so bad. (What I've been saying all along!). He said he could do surgery cut the muscle (to lengthen it) and then could put on a soft collar for 6 months and hopefully that would help her. He said it would be much less traumatic than the brace Scottish Rite is making and he said he would be very worried about scoliosis. Hmm...what am I supposed to think or do when two of supposedly the best doctors in Dallas totally disagree in their treatment plans?
We were supposed to go to the neurosurgeon yesterday but the surgeon had an emergency surgery and had to cancel, so we postponed until the 31st. I am anxious to get his thoughts on her neck, her spinal cord, and to see if there are any other missing pieces we have not thought about yet. Once we talk to him, we can get a game plan going for Maggie's treatment.
On a different note, we did go for a weight check this week and I was so frustrated to hear that she hasn't gained any weight in the past two weeks - what?!! How can that be?? She is hooked up to the pump constantly and now I am even taking out the backpack pump and attach it to the back of her stroller when we go out (I'm sure people will give us strange looks!). But I mentioned to the dietician that Maggie is now sitting up for almost 30 seconds by herself! And she is standing and holding on to things with a little help (thanks to her awesome Occupational Therapist). Finally she is starting to do some more physical things, but that of course means she is burning more calories, which explains why she is not gaining weight. I was hoping to start weaning her off of the 24 hour feeds now that her stomach has gotten used to 39 ml/hour. But since we have to increase her feeds to 45 ml/hour, the continuous will have to continue. G-tube babies are a fine science to figure out!
Today we are going to get her second RSV shot - called Synagis. Preemies/CLD babies get this antibodies shot once a month during cold/flu season and boy am I thankful for them. It is not a vaccine so it won't prevent her from getting RSV, but if she does get RSV hopefully it won't be bad enough that she would have to be hospitalized or put on a ventilator. I panicked on Tuesday - exactly 30 days after her last shot-because the clinic called and said they didn't receive her shot from the manufacturer. So the past two days I have been so paranoid about taking Maggie out and "Purell-ing" everyone that gets near her! But we're off this morning to get it and I know Maggie is not going to be happy. Usually she doesn't mind shots but this thing is huge!
Sorry for all the boring medical updates - I do thank you all for praying. I have to say, now that Maggie's reflux is under control (which will probably start back up now that we are increasing her feeds!) she is much more delightful. She still hates the car and screams constantly in it, and she is still frustrated because she can't crawl or walk and really wants to. But other than that, she is hysterically funny with her huge four new front teeth and giggles with joy and lifts up her arms every time I walk near her...
Monday, December 6, 2010
'Mystery Diagnosis'
The thing about having a rare or mysterious medical condition is that you need a doctor who's got your back. Thank you, Lord, that we do!
Maggie's primary pediatrician is amazing. He called me last week because he, too, was frustrated that Scottish Rite wasn't seeming to help Maggie or realizing the urgency of the situation. He said that we may have to take Maggie to Houston or out of state to get help because it doesn't seem like they are going to help her at Scottish Rite(probably cause they don't know what's causing the problem in the first place).
We are still going to see the neurosurgeon and craniofacial plastic surgeon (both who are supposed to be "the best" in Dallas). And I have hope that maybe they will have the perfect solution. But if not, it is nice to know her pediatrician is going to talk to his colleagues and try his hardest to find the perfect doctor for her. I told him that we will take her any place we need to go and we will. I don't know how, but we will figure it out!
And just as I am writing this I got a call from Scottish Rite and the doctor there wants to meet with us this week after her pediatrician called this morning. Hmmm...wonder what we said that all of a sudden he has time for us:).
Maggie's primary pediatrician is amazing. He called me last week because he, too, was frustrated that Scottish Rite wasn't seeming to help Maggie or realizing the urgency of the situation. He said that we may have to take Maggie to Houston or out of state to get help because it doesn't seem like they are going to help her at Scottish Rite(probably cause they don't know what's causing the problem in the first place).
We are still going to see the neurosurgeon and craniofacial plastic surgeon (both who are supposed to be "the best" in Dallas). And I have hope that maybe they will have the perfect solution. But if not, it is nice to know her pediatrician is going to talk to his colleagues and try his hardest to find the perfect doctor for her. I told him that we will take her any place we need to go and we will. I don't know how, but we will figure it out!
And just as I am writing this I got a call from Scottish Rite and the doctor there wants to meet with us this week after her pediatrician called this morning. Hmmm...wonder what we said that all of a sudden he has time for us:).
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