Thank you Terri, Rebecca & Veronica for your posts. Hearing from you all who are keeping up with Annie is gas in my tank.:)
We brought her home for an overnight visit tonight, and tomorrow we'll go to church. It's been a good, restful evening. God's mercies are new every morning. And evening!
Jean
This I recall to my mind,
Therefore I have hope.
Through the LORD’s mercies we are not consumed,
Because His compassions fail not.
They are new every morning;
Great is Your faithfulness. Isaiah 3:21-23
Saturday, May 26, 2007
Friday, May 25, 2007
Rehab Diaries--Friday, May 25th
Well, we're through almost 2 weeks of rehab. Woo-hoo. Today, Annie rode her trike again, walked in the gait trainer, tasted some whipped cream and Reese's Peanut Butter ice cream, and lip-synched a bit of Happy Birthday and the ABC song. Bill brought the whipped cream and Reese's in so we could experiment with flavors that might motivate her to eat. As I sprayed some whipped cream on her fingers, I reminded her that Miss Patti & Miss Vickie give her whipped cream from the church latte stand, and that seemed to strike a chord with her--and she tasted it without a fuss.
This afternoon we went outside to get some fresh air and enjoy the warm sun. I think she would have liked to take a nap in my arms--it was so nice out there. Tonight Bill is staying with her, and this weekend, we'll take Annie home for a little visit.
While we're in the hospital, we're still working on calibrating her endocrine system. It's still a bit out of whack. We're also adjusting some other medications. She is such a complex little girl...and as soon as you think you've got everything figured out, it changes!
One great thing though--she hasn't thrown up since the 19th. I think I'll put up an OSHA poster just to monitor how many days we can go without an industrial-sized barf. The doctor had an interesting hypothesis--that as Annie regains motor control of her extremities, she will likely gain motor control of her esophagus. That made a lot of sense to me, and so far, that seems to be the case.
Another significant improvement is that she has more attention--a key ingredient to learning anything new. She is attending more to commands and to what is going on around her. Her attention does decrease when she is tired, but when she's rested, she is tracking a lot better than last week.
Anyway--that's about it for this week. The Rehab doctors, nurses and therapists are great professionals to work with, and are very kind and thoughtful in their care of Annie.
Thank you for your prayers for Annie--we appreciate them and see God answering them!
Love,
Jean
This afternoon we went outside to get some fresh air and enjoy the warm sun. I think she would have liked to take a nap in my arms--it was so nice out there. Tonight Bill is staying with her, and this weekend, we'll take Annie home for a little visit.
While we're in the hospital, we're still working on calibrating her endocrine system. It's still a bit out of whack. We're also adjusting some other medications. She is such a complex little girl...and as soon as you think you've got everything figured out, it changes!
One great thing though--she hasn't thrown up since the 19th. I think I'll put up an OSHA poster just to monitor how many days we can go without an industrial-sized barf. The doctor had an interesting hypothesis--that as Annie regains motor control of her extremities, she will likely gain motor control of her esophagus. That made a lot of sense to me, and so far, that seems to be the case.
Another significant improvement is that she has more attention--a key ingredient to learning anything new. She is attending more to commands and to what is going on around her. Her attention does decrease when she is tired, but when she's rested, she is tracking a lot better than last week.
Anyway--that's about it for this week. The Rehab doctors, nurses and therapists are great professionals to work with, and are very kind and thoughtful in their care of Annie.
Thank you for your prayers for Annie--we appreciate them and see God answering them!
Love,
Jean
Wednesday, May 23, 2007
Rehab Diaries
Hi all!
Bill here. Sorry it's been so long without an update. Annie continues to do well in rehab at Childrens and we're doing our best to hold things together here at home.
Progress is slow, but it is definitely there. Annie's learning to balance on a tricycle (with lots of help), taste different things, and begin to interact with her world. We're encouraged at the hard work all the staff at Children's is pouring into our daughter.
Please continue to pray for progress with Annie, that she would remain concentrated on her rehab, and that God would continue to do the miraculous work of healing her. Please pray as well for the rest of the Sullivans as we work through being separated through the rehab process.
Thanks, and God bless,
Bill.
Bill here. Sorry it's been so long without an update. Annie continues to do well in rehab at Childrens and we're doing our best to hold things together here at home.
Progress is slow, but it is definitely there. Annie's learning to balance on a tricycle (with lots of help), taste different things, and begin to interact with her world. We're encouraged at the hard work all the staff at Children's is pouring into our daughter.
Please continue to pray for progress with Annie, that she would remain concentrated on her rehab, and that God would continue to do the miraculous work of healing her. Please pray as well for the rest of the Sullivans as we work through being separated through the rehab process.
Thanks, and God bless,
Bill.
Friday, May 18, 2007
Friday, May 18th
Bill is staying with Annie this weekend, so I can take a breather. This time in the hospital is alot easier than last time, but it's still a 24 hour a day thing, so I am very appreciative of the break. Have I mentioned lately how much I appreciate Bill? He really is the bomb. Caretaking is not for sissies.
I mentioned this in a previous blog, but walking around the hospital really heightens your awareness of the daily burden that so many parents bear in caring for their special needs children. And not just the physical burden, but the emotional drain of seeing a child suffer. I see alot of pain and worry on parent's faces. It's a tough place to be sometimes. But it is also a place to learn to appreciate little things like rocking your little one. Life is so fragile.
Anyway--today Annie kept up the good work. She spent some time in the "gait" trainer, walking through the hall (with lots of help). She stood for awhile and rocked back and forth on her own weight. She threw up her applesauce this morning, but kept her vanilla pudding down this afternoon. The speech therapist never has to wonder what she doesn't like. She just gives it back to him in a bucket.
So...thank you again for remembering us in your prayers. I do feel so selfish in asking for them. But you know, I asked Bill & my sister to pray this morning for Annie to have good attention, and this afternoon--she had good attention. Every incremental change she makes is directly related to your prayers. When Bill & I walk through our day, we do it in the strength God gives us. We can't do this without the Lord.
Love, Jean
"The joy of the Lord is your strength." Nehemiah 8:10
I mentioned this in a previous blog, but walking around the hospital really heightens your awareness of the daily burden that so many parents bear in caring for their special needs children. And not just the physical burden, but the emotional drain of seeing a child suffer. I see alot of pain and worry on parent's faces. It's a tough place to be sometimes. But it is also a place to learn to appreciate little things like rocking your little one. Life is so fragile.
Anyway--today Annie kept up the good work. She spent some time in the "gait" trainer, walking through the hall (with lots of help). She stood for awhile and rocked back and forth on her own weight. She threw up her applesauce this morning, but kept her vanilla pudding down this afternoon. The speech therapist never has to wonder what she doesn't like. She just gives it back to him in a bucket.
So...thank you again for remembering us in your prayers. I do feel so selfish in asking for them. But you know, I asked Bill & my sister to pray this morning for Annie to have good attention, and this afternoon--she had good attention. Every incremental change she makes is directly related to your prayers. When Bill & I walk through our day, we do it in the strength God gives us. We can't do this without the Lord.
Love, Jean
"The joy of the Lord is your strength." Nehemiah 8:10
Thursday, May 17, 2007
Thursday, May 17th
Gladly the Cross-eyed Bear?! That's funny. We'll try that one on, Terri.:)
So today, Annie had lots of PT/OT/Speech and, get this, Kim--Recreational Therapy! This is a busy place, but so far, Annie seems up to the challenge. I'm really happy to be here, and I think she is too. The doctors, nurses & therapists are tracking with Annie and wanting to get to know her quickly, and the transition from Rehab Without Walls to inpatient rehab has been seamless. Lots of good communication between all parties, and again, I'm happy with that.
Today she stood with just a little help from her PT, and practiced walking. (Lots of help walking, of course.) She ate some applesauce and chocolate pudding, using her fingers as utensils. She seems alot more receptive to food tastes. I was warned by the speech therapist that tomorrow we'll be getting REAL messy with the food. PLAYing with food is the precursor to EATing the food, I guess.
We're also working on potty retraining, so you might pray that she is successful with that. She is definitely showing signs that she CAN have success--it's just a matter of working with her.
So, all in all--things are going very well. She slept again through the night last night, after christening the night nurse with her first emesis. Don't you like that word--emesis? It sounds much more genteel than barf. Anyway, she's sleeping well, so thanks for remembering her in your prayers at night. Because when she's asleep, I'M ASLEEP!
Hugs to you all,
Jean
So today, Annie had lots of PT/OT/Speech and, get this, Kim--Recreational Therapy! This is a busy place, but so far, Annie seems up to the challenge. I'm really happy to be here, and I think she is too. The doctors, nurses & therapists are tracking with Annie and wanting to get to know her quickly, and the transition from Rehab Without Walls to inpatient rehab has been seamless. Lots of good communication between all parties, and again, I'm happy with that.
Today she stood with just a little help from her PT, and practiced walking. (Lots of help walking, of course.) She ate some applesauce and chocolate pudding, using her fingers as utensils. She seems alot more receptive to food tastes. I was warned by the speech therapist that tomorrow we'll be getting REAL messy with the food. PLAYing with food is the precursor to EATing the food, I guess.
We're also working on potty retraining, so you might pray that she is successful with that. She is definitely showing signs that she CAN have success--it's just a matter of working with her.
So, all in all--things are going very well. She slept again through the night last night, after christening the night nurse with her first emesis. Don't you like that word--emesis? It sounds much more genteel than barf. Anyway, she's sleeping well, so thanks for remembering her in your prayers at night. Because when she's asleep, I'M ASLEEP!
Hugs to you all,
Jean
Tuesday, May 15, 2007
Tuesday, May 15th
Annie's sitting next to me in the dayroom on the rehab floor. She did very well today--no throwing up, and lots of good work for the therapists. She even tasted some yogurt! The therapist dunked her fingers in the carton and she put it in her mouth by herself. She also tasted crushed saltine crackers for the first time in...months!
We took a walk down to the lobby this afternoon, and the greeter there pointed to a huge stuffed bear sitting in the corner. "Would you like a bear?" she asked Annie. I guess it was donated by someone--so now we have a bear guarding the entrance to Annie's room. We should name him. Any ideas?
She's pretty pooped tonight, so I have to scoot. Thanks SO much for your prayers! Today was a very good day. Please pray that she sleeps like a log.
Love, Jean
We took a walk down to the lobby this afternoon, and the greeter there pointed to a huge stuffed bear sitting in the corner. "Would you like a bear?" she asked Annie. I guess it was donated by someone--so now we have a bear guarding the entrance to Annie's room. We should name him. Any ideas?
She's pretty pooped tonight, so I have to scoot. Thanks SO much for your prayers! Today was a very good day. Please pray that she sleeps like a log.
Love, Jean
Monday, May 14, 2007
Monday, May 14th
Well, tomorrow is the BIG day. Only the hospital hasn't officially confirmed with us that we should go down in the morning. We're waiting for one more piece of paperwork to fall into place and then we go. I think they'll notify us at 7:32 AM. THEN we'll get in the car.
I was talking to Beth, Annie's OT, today, and I asked her, "What do you think God is trying to tell me in this whole episode?" She said, "Surrender and dependence upon Him." Okay--those two words keep repeating in my mind: surrender and dependence. We as red-blooded A-mar-E-cans think we have control of our lives--but when difficult things happen we find out how much control we really have. Zip. Zero. Zilch. "Surrender and dependence upon God," the words for today.
So--thank you for praying for Annie's transition into Rehab. What to pray for? No throwing up, peace, protection from getting a hospital bug, steady and measurable progress, comfort for the kids at home, strength and energy for Bill & I, and whatever God lays on your heart. Your prayers are such an integral part of her healing and we can feel them every day.
Jean
Now may the God of peace himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ. He who calls you is faithful; he will surely do it. Brothers, pray for us.
1 Thessalonians 5:23-25
I was talking to Beth, Annie's OT, today, and I asked her, "What do you think God is trying to tell me in this whole episode?" She said, "Surrender and dependence upon Him." Okay--those two words keep repeating in my mind: surrender and dependence. We as red-blooded A-mar-E-cans think we have control of our lives--but when difficult things happen we find out how much control we really have. Zip. Zero. Zilch. "Surrender and dependence upon God," the words for today.
So--thank you for praying for Annie's transition into Rehab. What to pray for? No throwing up, peace, protection from getting a hospital bug, steady and measurable progress, comfort for the kids at home, strength and energy for Bill & I, and whatever God lays on your heart. Your prayers are such an integral part of her healing and we can feel them every day.
Jean
Now may the God of peace himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ. He who calls you is faithful; he will surely do it. Brothers, pray for us.
1 Thessalonians 5:23-25
Saturday, May 12, 2007
Saturday, May 12th
Things are going better--we had a calm evening yesterday, and today is going well. Annie had her best "alert" day yet yesterday, and she's expressing herself more--crying like her old self, if you can imagine that being a good thing. Emotions are controlled by our brains too, and the way she expresses herself, the "real" Annie, seems to be emerging more and more every day. I'm reminded about your comment, Maurita, that you're praying that she giggles. I guess crying like her old self may be a precursor to the giggling. I'm hoping! Anyway, thought I'd give you a brief update that even though we're still working on the details from TOP to BOTTOM, things are still improving.
Yesterday, I also heard from an old friend, Cindy, whose little girl had a kidney transplant a few years back. She had been tube-fed, and they struggled with the throwing up thing too. It was so good to commiserate with someone who's been there. She had lots of encouraging words and ideas for us. Thank you, Cindy!
Have a Happy Mother's Day all you moms--hug your kiddos and thank Jesus when they cry!
Love, Jean
Yesterday, I also heard from an old friend, Cindy, whose little girl had a kidney transplant a few years back. She had been tube-fed, and they struggled with the throwing up thing too. It was so good to commiserate with someone who's been there. She had lots of encouraging words and ideas for us. Thank you, Cindy!
Have a Happy Mother's Day all you moms--hug your kiddos and thank Jesus when they cry!
Love, Jean
Thursday, May 10, 2007
Thursday, May 10
We're still having trouble with the eating/throwing up/volume/reflux/whatever thing. Please pray that she clear her gut tomorrow morning. You know, the little things are so important, and being regular is a biggie right now. If the gut is clogged, the only other place for stuff to go is UP. So, pray that they go DOWN. FAST.
Please also pray that our evenings "getting ready for bed" are more relaxed. She just gets to be on the brink with the throwing up thing towards 4 PM, and it just seems to escalate every night. Last night she threw up and this morning she threw up. So we gave her some stuff to stop the throwing up and she looked like a blower fish all day. We also have been giving her stuff to clear her gut, but nothing has worked yet.
Don't you just love to hear about all this??
Jean
Please also pray that our evenings "getting ready for bed" are more relaxed. She just gets to be on the brink with the throwing up thing towards 4 PM, and it just seems to escalate every night. Last night she threw up and this morning she threw up. So we gave her some stuff to stop the throwing up and she looked like a blower fish all day. We also have been giving her stuff to clear her gut, but nothing has worked yet.
Don't you just love to hear about all this??
Jean
Wednesday, May 9, 2007
Wednesday, May 9th
Annie did very well today--thank you so much for praying for her. Looks like she will be going into inpatient rehab early next week, if all the paperwork goes through smoothly, as it should. The therapists we met with at Children's were actually very impressed with the intensity of the rehab that she's gotten at home, but there are advantages to inpatient rehab that she will benefit from, so here we go!
Again--thanks for remembering and praying for Annie. And, thanks to all you who post comments--they really encourage us. Don't be bashful about sharing your 2 cents.
Jean
Again--thanks for remembering and praying for Annie. And, thanks to all you who post comments--they really encourage us. Don't be bashful about sharing your 2 cents.
Jean
Tuesday, May 8, 2007
Tuesday, May 8th
Last night Bill and I were reviewing Annie's daily food/medicine logs, and saw that her throwing up problems seemed to begin when we increased the rate the food goes into her tummy through the food pump. So today, we lowered her rate, and gave her some medicine to make the food go through her gut faster, and voila! NO THROWING UP!!!! Hooray! Now, there were a few close calls today where she coughed or gagged--but she held it together. So, a major praise God for answering your prayers. Thank you Lord.
Now, there is another problem. Of course--you didn't think you'd get off this site without more things to pray about did you?? So, she's got this thing happening as of about a week ago. Atonic "head drop" seizures. Like, all of the sudden, her head drops. It's not a good thing. Please pray that they stop--and that if necessary, we find out what's causing them.
Today was pretty busy--three rehab appointments and a lunch date with Grandmommie & Poppie & Aunt Susie. We went out and walked around Mill Creek Town Center and had lunch outside in the sunshine.
Tomorrow is the big day for her rehab evaluation at Children's. Please pray for God to help us through the day--we have appointments from 9 AM - 1 PM. Annie will need stamina and peace as new people work with her. I appreciate you thinking and praying for us--it really is a comfort--and God will answer. I really want God's will to be done--I'm at peace with His leading.
I'll update this tomorrow night and let you know how everything went.
Jean
PS Please keep praying for no barfing.:)
Now, there is another problem. Of course--you didn't think you'd get off this site without more things to pray about did you?? So, she's got this thing happening as of about a week ago. Atonic "head drop" seizures. Like, all of the sudden, her head drops. It's not a good thing. Please pray that they stop--and that if necessary, we find out what's causing them.
Today was pretty busy--three rehab appointments and a lunch date with Grandmommie & Poppie & Aunt Susie. We went out and walked around Mill Creek Town Center and had lunch outside in the sunshine.
Tomorrow is the big day for her rehab evaluation at Children's. Please pray for God to help us through the day--we have appointments from 9 AM - 1 PM. Annie will need stamina and peace as new people work with her. I appreciate you thinking and praying for us--it really is a comfort--and God will answer. I really want God's will to be done--I'm at peace with His leading.
I'll update this tomorrow night and let you know how everything went.
Jean
PS Please keep praying for no barfing.:)
Saturday, May 5, 2007
Saturday, May 5th
Happy Cinco de Mayo.
Another day, another barf. How do you spell stress? P-U-K-E. Please pray that we resolve this issue, and that she sleep tonight. Last night she was up at 3:00. Something must be changing in her system, or ???--but things are quite unstable now. Like they were stable before.
Please pray for our kids too. They are trying hard to be brave, but this time is really taking a toll on them.
Thanks for listening to me whine.
Jean
Have mercy on me, O LORD, for I am weak;
O LORD, heal me, for my bones are troubled.
My soul also is greatly troubled;
But You, O LORD—how long?
Return, O LORD, deliver me!
Oh, save me for Your mercies’ sake!
Psalm 6:2-4
Another day, another barf. How do you spell stress? P-U-K-E. Please pray that we resolve this issue, and that she sleep tonight. Last night she was up at 3:00. Something must be changing in her system, or ???--but things are quite unstable now. Like they were stable before.
Please pray for our kids too. They are trying hard to be brave, but this time is really taking a toll on them.
Thanks for listening to me whine.
Jean
Have mercy on me, O LORD, for I am weak;
O LORD, heal me, for my bones are troubled.
My soul also is greatly troubled;
But You, O LORD—how long?
Return, O LORD, deliver me!
Oh, save me for Your mercies’ sake!
Psalm 6:2-4
Friday, May 4, 2007
Friday, May 4th
I write on this blog after Annie is in bed asleep. I give her all her night medicines, wait until she's asleep, then I put this video monitor on the computer desk so I can watch her while I write. An anonymous angel gave us this video monitor. It has saved my sanity. I move it next to the bed at night and the audio is so sensitive, I can hear her food pump...so I can hear anything else too. Having it has been a load off my mind and blood pressure. So imagine my surprise when I woke up this morning at 2:00 AM and looked onto the monitor to see one of the kids (I won't name names) sleepwalking into Annie's room. Fortunately, it didn't take long to direct that child back to his or her bed.
These last couple of weeks have been tough--Annie has been throwing up just about every day. I've been in touch with her nurses to try to figure out why. Maybe her medicines, maybe her gut is a bit slow...it's a puzzle. Tonight she was close to losing her groceries--but kept herself together for the most part. But even with this problem, she keeps moving forward in her attention span, stamina, and balance. Speech is still hit or miss--she was calling me from upstairs the other day--David was sitting with her, and she was just hollering "Maaamaaaa," which of course, is the best word in the whole world. But, for the most part, she's not "talking" alot. Keep knocking on God's door for her, okay?
Jean
These last couple of weeks have been tough--Annie has been throwing up just about every day. I've been in touch with her nurses to try to figure out why. Maybe her medicines, maybe her gut is a bit slow...it's a puzzle. Tonight she was close to losing her groceries--but kept herself together for the most part. But even with this problem, she keeps moving forward in her attention span, stamina, and balance. Speech is still hit or miss--she was calling me from upstairs the other day--David was sitting with her, and she was just hollering "Maaamaaaa," which of course, is the best word in the whole world. But, for the most part, she's not "talking" alot. Keep knocking on God's door for her, okay?
Jean
Tuesday, May 1, 2007
Tuesday, May 1st
Happy May Day. Never quite understood what May Day was all about, but happy May Day anyway. Something about flowers, I think.
Yesterday Annie took a leap in her attention--she seemed more "there" when she looked at you, and she was smiling alot. Of course, today she looked tired and groggy all day, so one step forward, one back. However, tonight she perked up and was rolling around the living room and "talking" back and forth with Olivia. Not words, remember...but mimicking Olivia's intonations.
Please continue praying that her attention, endurance, speech, strength and coordination increase, that she adjusts to her new doses of medicines, and that she has no nausea or throwing up. It is so hard to know what to do from minute to minute, because she can't tell us how she feels--we either have to read her cues accurately or find out the hard way. God really has to help us with this.
Her rehab evaluation at Children's is next Wednesday. Please pray for that whole day, especially Annie's endurance and responses to commands.
Thanks again for your prayers--we so appreciate your faithful intercession for us!
Jean
O LORD, I call upon you; hasten to me!
Give ear to my voice when I call to you!
Let my prayer be counted as incense before you,
and the lifting up of my hands as the evening sacrifice! Psalm 141:1-2
Yesterday Annie took a leap in her attention--she seemed more "there" when she looked at you, and she was smiling alot. Of course, today she looked tired and groggy all day, so one step forward, one back. However, tonight she perked up and was rolling around the living room and "talking" back and forth with Olivia. Not words, remember...but mimicking Olivia's intonations.
Please continue praying that her attention, endurance, speech, strength and coordination increase, that she adjusts to her new doses of medicines, and that she has no nausea or throwing up. It is so hard to know what to do from minute to minute, because she can't tell us how she feels--we either have to read her cues accurately or find out the hard way. God really has to help us with this.
Her rehab evaluation at Children's is next Wednesday. Please pray for that whole day, especially Annie's endurance and responses to commands.
Thanks again for your prayers--we so appreciate your faithful intercession for us!
Jean
O LORD, I call upon you; hasten to me!
Give ear to my voice when I call to you!
Let my prayer be counted as incense before you,
and the lifting up of my hands as the evening sacrifice! Psalm 141:1-2
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