One of the things Annie's OT, Beth, wanted to see more of is Annie rolling to get from point A to point B. Today is the day she decided to do that. Over and over. Roll over here, over there, tangle up in the feeding tube, what's over there?, crash into the hearth, bang into the piano legs, roll, roll, roll. I'm going into the living room now to rearrange the furniture. :-)
Jean
PS--Look at the picture Bill posted.
Friday, April 27, 2007
Thursday, April 26, 2007
Thursday, April 26th
Time flies when you're...is it Thursday already? The end of April? Where did February and March go? I feel like I'm a bear that's come out of hibernating all winter. I'm starting to pay attention to the news--at least the weather report. Life crises are so consuming. It's like that's all you think about.
So Annie had a good week. A couple of urps, but nothing huge. The medicine changes are going okay, but still need to be fine-tuned. Her attention span is improving, but her vocalizations are off & on--probably depending on how her medicines are affecting her. Her balance for sitting continues to improve too.
Today she sat independently on a little black bench with her feet resting on the floor for about 3-5 minutes while I sang "Happy Birthday" using everyone's name in our family and then some of yours. For the last minute or so, her PT, Debbie, actually tried to push her off balance with her finger touching Annie's sides, and Annie kept sitting upright and strong...as long as I was singing "Happy Birthday." It was very interesting to see that she has strong balance ability--as long as her attention is focused.
Brain injury doesn't affect just physical or just cognitive--it's how everything works together. Think about what you have to do just to walk across a room--your vision judges how far you have to walk around the furniture, you're thinking about why you're walking across the room and where you're going, and your body does what your brain is telling it as you walk--arms, torso, legs, and feet. Balance, coordination, memory, reason...all things your brain controls. That brain God made for you.
I read a book to Annie today titled "What Does God Do?" After reading about everything God made in creation, there's a page at the end of the book with a picture of a baby in a cradle. Annie used to always ask me if that baby was her--and of course I always said yes. The verse on that page says, "You made me in an amazing and wonderful way. All the days planned for me were written in your book before I was one day old." Psalm 139:14 & 16. God created Annie's brain before she was born. I'm praying that He'll recreate hers now.
Jean
So Annie had a good week. A couple of urps, but nothing huge. The medicine changes are going okay, but still need to be fine-tuned. Her attention span is improving, but her vocalizations are off & on--probably depending on how her medicines are affecting her. Her balance for sitting continues to improve too.
Today she sat independently on a little black bench with her feet resting on the floor for about 3-5 minutes while I sang "Happy Birthday" using everyone's name in our family and then some of yours. For the last minute or so, her PT, Debbie, actually tried to push her off balance with her finger touching Annie's sides, and Annie kept sitting upright and strong...as long as I was singing "Happy Birthday." It was very interesting to see that she has strong balance ability--as long as her attention is focused.
Brain injury doesn't affect just physical or just cognitive--it's how everything works together. Think about what you have to do just to walk across a room--your vision judges how far you have to walk around the furniture, you're thinking about why you're walking across the room and where you're going, and your body does what your brain is telling it as you walk--arms, torso, legs, and feet. Balance, coordination, memory, reason...all things your brain controls. That brain God made for you.
I read a book to Annie today titled "What Does God Do?" After reading about everything God made in creation, there's a page at the end of the book with a picture of a baby in a cradle. Annie used to always ask me if that baby was her--and of course I always said yes. The verse on that page says, "You made me in an amazing and wonderful way. All the days planned for me were written in your book before I was one day old." Psalm 139:14 & 16. God created Annie's brain before she was born. I'm praying that He'll recreate hers now.
Jean
Saturday, April 21, 2007
Saturday, April 21st...PM
...And speaking of being a blink away from talking--
A couple of nights ago Andy and Bill heard Annie say "Daaa." Like "Dad," except for the last consonant. Okay, I'll give Bill that. I had been praying that the first word Annie says is Dad. (With the exception of last month's "OW!) So Bill gets the first word: "Dad."
But, just to top that, this afternoon Olivia was reading to Annie one of her favorite books, Dr. Seuss' "One Fish, Two Fish." When Olivia got to the page that says:
We see them come.
We see them go.
Some are fast.
And some are slow.
Some are high.
And some are low.
Not one of them is like another.
Don't ask us why.
Go ask your....(mother.)
Olivia waited a moment and Annie jumped in, finished the sentence and said, "Mama!"
Now, was I in the room when she said this? OF COURSE NOT!! But--Aunt Susie, Taylor & Olivia heard it. So there's my verification of this monumental accomplishment. Now you know that God answers prayer!
Signed:
One happy mama--Jean
A couple of nights ago Andy and Bill heard Annie say "Daaa." Like "Dad," except for the last consonant. Okay, I'll give Bill that. I had been praying that the first word Annie says is Dad. (With the exception of last month's "OW!) So Bill gets the first word: "Dad."
But, just to top that, this afternoon Olivia was reading to Annie one of her favorite books, Dr. Seuss' "One Fish, Two Fish." When Olivia got to the page that says:
We see them come.
We see them go.
Some are fast.
And some are slow.
Some are high.
And some are low.
Not one of them is like another.
Don't ask us why.
Go ask your....(mother.)
Olivia waited a moment and Annie jumped in, finished the sentence and said, "Mama!"
Now, was I in the room when she said this? OF COURSE NOT!! But--Aunt Susie, Taylor & Olivia heard it. So there's my verification of this monumental accomplishment. Now you know that God answers prayer!
Signed:
One happy mama--Jean
Saturday, April 21st
Today marks three months since Annie's initial seizure. She's come a long way in three months, hasn't she? Bill and I are so grateful that we have been able to walk this road with you all. God's love and support working through you has kept us upright and moving forward.
We had a good visit at the neuro clinic on Thursday. We're adjusting some medicine to keep seizure activity down and attention up. Pray that as we make these adjustments, things go smoothly.
I'm going to call the rehab clinic today to see if she can get in for an evaluation before May 9th, which is the scheduled day for her reevaluation. The team working here at home with her thinks she's can do more hours of rehab each day now. Pray that God paves the way, if the timing is right.
Annie's vocalizations sound more and more like she's trying to sing songs--not monotone like before. She just seems like she's just a blink away from saying words.
Again, thank you so much for your prayers. It is so comforting to hear that God brings Annie to your minds through the day. I pray that He helps all of us to pray according to His will.
Jean
Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. Romans 8:26-27
We had a good visit at the neuro clinic on Thursday. We're adjusting some medicine to keep seizure activity down and attention up. Pray that as we make these adjustments, things go smoothly.
I'm going to call the rehab clinic today to see if she can get in for an evaluation before May 9th, which is the scheduled day for her reevaluation. The team working here at home with her thinks she's can do more hours of rehab each day now. Pray that God paves the way, if the timing is right.
Annie's vocalizations sound more and more like she's trying to sing songs--not monotone like before. She just seems like she's just a blink away from saying words.
Again, thank you so much for your prayers. It is so comforting to hear that God brings Annie to your minds through the day. I pray that He helps all of us to pray according to His will.
Jean
Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. Romans 8:26-27
Wednesday, April 18, 2007
Wednesday, April 18th
Last night Annie didn't sleep much. Don't know if we didn't shake up her medicine enough or what, but at about 1:30 AM, she yelled from her bedroom. Couple things---one, at 1:30 AM, she's usually asleep. And two, up until about 1:30 AM last night, she hadn't yelled yet. So I rouse from a dead sleep, leap over our bed into the her room in one and a half steps, and look at her. She's not doing anything remarkable, except lying there wondering why I'm hyperventilating. I stuff my heart back into my throat and go back to bed. Couple minutes later she starts making more sounds that are new. By this time, I'm starting to get that she's not in pain, just trying out some new noises she thought up because someone was praying that she could talk again, and this must be the warm-up. This went on pretty much the whole night, until about 5:30 AM, when I woke Bill up and told him he could sit and listen to her for awhile, so I could pretend to sleep for another hour. So I want to know which one of you were praying for Annie to talk last night????
More progress--for PT Debbie, she used her right hand (which if you recall, she hasn't used much at all) to activate the sound on a toy 3 or 4 times. And, this afternoon when I stood her up facing me to practice her standing, she began taking steps around me--initiating walking herself.
We saw her pediatrician yesterday--Annie's gained 4 lbs. in a month. The doctor is going to check with the nutritionist about maybe dropping her caloric intake, but she's always been such a string bean, she probably needs a little extra heft for all the work she's doing in her PT & OT times. (I could use a chiropractor myself, but Advil will have to do for now.)
Tomorrow we go to Children's neuro clinic for a check up.
Jean
PS Pray that she practices her new sounds during the day.
O LORD, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness
you have done marvelous things,
things planned long ago. Isaiah 25:1
More progress--for PT Debbie, she used her right hand (which if you recall, she hasn't used much at all) to activate the sound on a toy 3 or 4 times. And, this afternoon when I stood her up facing me to practice her standing, she began taking steps around me--initiating walking herself.
We saw her pediatrician yesterday--Annie's gained 4 lbs. in a month. The doctor is going to check with the nutritionist about maybe dropping her caloric intake, but she's always been such a string bean, she probably needs a little extra heft for all the work she's doing in her PT & OT times. (I could use a chiropractor myself, but Advil will have to do for now.)
Tomorrow we go to Children's neuro clinic for a check up.
Jean
PS Pray that she practices her new sounds during the day.
O LORD, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness
you have done marvelous things,
things planned long ago. Isaiah 25:1
Saturday, April 14, 2007
Saturday, April 14th
Well--Annie has made some big strides in her rehab this week! She sat up by herself on Thursday--for about 5 minutes while OT Beth worked with her. (See the pictures.) She has been allowing more "tastes" of food--strained pears seems to be a good thing. Her facial expressions have increased significantly, and her vocalizations are more frequent and seem to be more intentional. Her Grandmommie gave her a stuffed toy elephant that sings the ABC song, and after she listens to it, she always hums, and seems to be singing it in response. And yesterday, she stuck her tongue out 4 or 5 times to mimic her speech therapist, BJ.
Intentional motor movements are so important--and we are seeing them more and more. So--this week her rehab nurse is going to talk to the team to see if we can move up her rehab evaluation and get her admitted to inpatient Children's Rehabilitation soon. Please pray that God smooth the way for this to happen. I know His timing is perfect. It'll be at least 3 more weeks in the hospital, but the intensity of the rehab will help Annie make bigger gains in a shorter amount of time.
Meanwhile--send up some praises for her progress!
Jean
But certainly God has heard me;
He has attended to the voice of my prayer.
Blessed be God,
Who has not turned away my prayer
Nor His mercy from me! Psalm 66:19-20
Intentional motor movements are so important--and we are seeing them more and more. So--this week her rehab nurse is going to talk to the team to see if we can move up her rehab evaluation and get her admitted to inpatient Children's Rehabilitation soon. Please pray that God smooth the way for this to happen. I know His timing is perfect. It'll be at least 3 more weeks in the hospital, but the intensity of the rehab will help Annie make bigger gains in a shorter amount of time.
Meanwhile--send up some praises for her progress!
Jean
But certainly God has heard me;
He has attended to the voice of my prayer.
Blessed be God,
Who has not turned away my prayer
Nor His mercy from me! Psalm 66:19-20
Wednesday, April 11, 2007
Wednesday, April 11th
The "SPIO" suit arrived yesterday, and already we are noticing more control in Annie's PT, OT, & speech therapy times. She seems more calm, more attentive, and more alert too. She even had more facial expression that just about bordered on an out-and-out smile!
The top part of the suit is just a little big, so we ordered a smaller size that will provide a more snug fit--and hopefully, more sensory input that helps. She is sitting with almost no support--something she couldn't do at all last week. She also lifted herself to a kneeling position when OT Beth was working with her today.
Yesterday during speech, she tasted apple juice on her toothbrush and didn't melt down--she actually seemed to like it. Pray that I have the discipline to keep offering her tastes of food often enough to get her back eating soon. Again, between keeping her on track with medicines, enteral feeding, PT/OT, etc.--the hours slip away before I take the time to work with her on eating food!
Thank you all again for your perseverance in prayer for Annie.
Jean
My friend, Kathy, shared these verses with me yesterday:
That the God of our Lord Jesus Christ, the Father of glory, may give to you a spirit of wisdom and of revelation in the knowledge of Him. I pray that the eyes of your heart may be enlightened, so that you will know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the surpassing greatness of His power toward us who believe. These are in accordance with the working of the strength of His might which He brought about in Christ, when He raised Him from the dead and seated Him at His right hand in the heavenly places. Ephesians 1:17-20
The top part of the suit is just a little big, so we ordered a smaller size that will provide a more snug fit--and hopefully, more sensory input that helps. She is sitting with almost no support--something she couldn't do at all last week. She also lifted herself to a kneeling position when OT Beth was working with her today.
Yesterday during speech, she tasted apple juice on her toothbrush and didn't melt down--she actually seemed to like it. Pray that I have the discipline to keep offering her tastes of food often enough to get her back eating soon. Again, between keeping her on track with medicines, enteral feeding, PT/OT, etc.--the hours slip away before I take the time to work with her on eating food!
Thank you all again for your perseverance in prayer for Annie.
Jean
My friend, Kathy, shared these verses with me yesterday:
That the God of our Lord Jesus Christ, the Father of glory, may give to you a spirit of wisdom and of revelation in the knowledge of Him. I pray that the eyes of your heart may be enlightened, so that you will know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the surpassing greatness of His power toward us who believe. These are in accordance with the working of the strength of His might which He brought about in Christ, when He raised Him from the dead and seated Him at His right hand in the heavenly places. Ephesians 1:17-20
Tuesday, April 10, 2007
Tuesday, April 10th
Miss Debbie came by this morning, and we went to the optometrist today. The doctor tested Annie's visual accuity--which is restored, and her eyes track in all visual fields. She may be missing a few "spaces," because sometimes she didn't fluidly track...but that may have more to do with her motor ability rather than vision. Either way, she can see, and that is a major PRAISE! We need to practice helping her eyes to work together at close range--when the doctor tried to move something close to her nose, she didn't cross her eyes together. So, we need to practice that.
Anyway--that's the news for today. Praise God for that huge part of her healing!
Jean
Anyway--that's the news for today. Praise God for that huge part of her healing!
Jean
Saturday, April 7, 2007
April 7th--Annie's 4th Birthday!
Annie turns 4 today, and we've got a Princess Party planned for her--balloons, cake, ice cream, candles, and a Happy Birthday song from her brothers & sister! Don't tell Annie, but I went to Costco & got her a swimsuit & cover-up with Cinderella on it--hopefully it'll come in handy when she goes into inpatient rehab at the hospital and can swim in their pool.
This morning, we worked on her army crawl, which she seems to be getting the hang of. She doesn't initiate it yet, but she does cooperate when I put her on her tummy and work with her. She rolls over from tummy to back when I'm not looking--she really doesn't prefer being on her tummy. We also have been working on walking too. She knows the sequencing of "left-right," but she doesn't have coordination yet. She can sit up for longer (and stronger) than she did last week, so that's good. And she also has allowed a taste of formula on her toothbrush--accepting any food has been a challenge, so this is also a great improvement. And today, she tasted Reese's Peanut Butter Cup ice cream without a fuss--and seemed to want a lot more than I gave her. Hmm...maybe I just haven't been trying the right foods??
Her OT has recommended we get a "SPIO" garment to help "ground" her, so she doesn't feel like she's out in space. Do a Google search on it & read about it. It's a lycra undergarment that gives kids sensory input. Hopefully it will help her in her sitting and coordination of her arms and legs.
Tuesday she has a Vision Therapy appointment, and I'm also trying to get her in to see a neurologist soon.
Her feeding is going well--no throwing up since this past Tuesday night. Pray that we can keep bumping up the rate so she can get through a feeding in less than 2 1/2 hours. One hour would be great. I don't know how soon that'll be.
Again, the other option to all of the above is that God would heal her today. I'd take that. But I do want to encourage you (ME) that she is making steady progress.
Happy Easter to you all!
Love,
Jean
The Road to Emmaus
Now behold, two of them were traveling that same day to a village called Emmaus, which was seven miles from Jerusalem. And they talked together of all these things which had happened. So it was, while they conversed and reasoned, that Jesus Himself drew near and went with them. But their eyes were restrained, so that they did not know Him. And He said to them, “What kind of conversation is this that you have with one another as you walk and are sad?”
Then the one whose name was Cleopas answered and said to Him, “Are You the only stranger in Jerusalem, and have You not known the things which happened there in these days?” And He said to them, “What things?”
So they said to Him, “The things concerning Jesus of Nazareth, who was a Prophet mighty in deed and word before God and all the people, and how the chief priests and our rulers delivered Him to be condemned to death, and crucified Him. But we were hoping that it was He who was going to redeem Israel. Indeed, besides all this, today is the third day since these things happened. Yes, and certain women of our company, who arrived at the tomb early, astonished us. When they did not find His body, they came saying that they had also seen a vision of angels who said He was alive. And certain of those who were with us went to the tomb and found it just as the women had said; but Him they did not see.”
Then He said to them, “O foolish ones, and slow of heart to believe in all that the prophets have spoken! Ought not the Christ to have suffered these things and to enter into His glory?” And beginning at Moses and all the Prophets, He expounded to them in all the Scriptures the things concerning Himself.
Then they drew near to the village where they were going, and He indicated that He would have gone farther. But they constrained Him, saying, “Abide with us, for it is toward evening, and the day is far spent.” And He went in to stay with them.
Now it came to pass, as He sat at the table with them, that He took bread, blessed and broke it, and gave it to them. Then their eyes were opened and they knew Him; and He vanished from their sight.
And they said to one another, “Did not our heart burn within us while He talked with us on the road, and while He opened the Scriptures to us?” So they rose up that very hour and returned to Jerusalem, and found the eleven and those who were with them gathered together, saying, “The Lord is risen indeed, and has appeared to Simon!” And they told about the things that had happened on the road, and how He was known to them in the breaking of bread.
Luke 24:13-35
This morning, we worked on her army crawl, which she seems to be getting the hang of. She doesn't initiate it yet, but she does cooperate when I put her on her tummy and work with her. She rolls over from tummy to back when I'm not looking--she really doesn't prefer being on her tummy. We also have been working on walking too. She knows the sequencing of "left-right," but she doesn't have coordination yet. She can sit up for longer (and stronger) than she did last week, so that's good. And she also has allowed a taste of formula on her toothbrush--accepting any food has been a challenge, so this is also a great improvement. And today, she tasted Reese's Peanut Butter Cup ice cream without a fuss--and seemed to want a lot more than I gave her. Hmm...maybe I just haven't been trying the right foods??
Her OT has recommended we get a "SPIO" garment to help "ground" her, so she doesn't feel like she's out in space. Do a Google search on it & read about it. It's a lycra undergarment that gives kids sensory input. Hopefully it will help her in her sitting and coordination of her arms and legs.
Tuesday she has a Vision Therapy appointment, and I'm also trying to get her in to see a neurologist soon.
Her feeding is going well--no throwing up since this past Tuesday night. Pray that we can keep bumping up the rate so she can get through a feeding in less than 2 1/2 hours. One hour would be great. I don't know how soon that'll be.
Again, the other option to all of the above is that God would heal her today. I'd take that. But I do want to encourage you (ME) that she is making steady progress.
Happy Easter to you all!
Love,
Jean
The Road to Emmaus
Now behold, two of them were traveling that same day to a village called Emmaus, which was seven miles from Jerusalem. And they talked together of all these things which had happened. So it was, while they conversed and reasoned, that Jesus Himself drew near and went with them. But their eyes were restrained, so that they did not know Him. And He said to them, “What kind of conversation is this that you have with one another as you walk and are sad?”
Then the one whose name was Cleopas answered and said to Him, “Are You the only stranger in Jerusalem, and have You not known the things which happened there in these days?” And He said to them, “What things?”
So they said to Him, “The things concerning Jesus of Nazareth, who was a Prophet mighty in deed and word before God and all the people, and how the chief priests and our rulers delivered Him to be condemned to death, and crucified Him. But we were hoping that it was He who was going to redeem Israel. Indeed, besides all this, today is the third day since these things happened. Yes, and certain women of our company, who arrived at the tomb early, astonished us. When they did not find His body, they came saying that they had also seen a vision of angels who said He was alive. And certain of those who were with us went to the tomb and found it just as the women had said; but Him they did not see.”
Then He said to them, “O foolish ones, and slow of heart to believe in all that the prophets have spoken! Ought not the Christ to have suffered these things and to enter into His glory?” And beginning at Moses and all the Prophets, He expounded to them in all the Scriptures the things concerning Himself.
Then they drew near to the village where they were going, and He indicated that He would have gone farther. But they constrained Him, saying, “Abide with us, for it is toward evening, and the day is far spent.” And He went in to stay with them.
Now it came to pass, as He sat at the table with them, that He took bread, blessed and broke it, and gave it to them. Then their eyes were opened and they knew Him; and He vanished from their sight.
And they said to one another, “Did not our heart burn within us while He talked with us on the road, and while He opened the Scriptures to us?” So they rose up that very hour and returned to Jerusalem, and found the eleven and those who were with them gathered together, saying, “The Lord is risen indeed, and has appeared to Simon!” And they told about the things that had happened on the road, and how He was known to them in the breaking of bread.
Luke 24:13-35
Tuesday, April 3, 2007
Tuesday, April 3rd
I thought I'd give a little update on the current prayer requests for Annie--for you guys who like to know the nuts and bolts of what to pray for:
1. That she get in to see her new neurologist (who is close by in Woodinville) asap.
2. That her appointment with the new vision therapist next Tuesday shows exactly what her vision capability is--and that her vision is completely healed. She is tracking well, and looks clearly at you. Her eyes are much "brighter" than in the hospital.
3. That her Addison's remain stable. She seems to be dumping a little more fluid...which is a concern to me. I'll be in touch with her doctor again today.
4. That her "core" muscles strengthen. Annie is getting stronger, but needs more strength to sit up by herself. Her arms are still flailing around, and she needs her "spatial perception" in her brain healed.
5. For her to TALK!
Praise God for:
1. Her sleeping well at night, and only getting up for diaper changes.
2. For the progress she's made so far in her vision, and ability to stand with more strength.
3. For her great head control.
4. For Bill. He is the total bomb.
5. For my kids. They are trying very hard to roll with this.
6. For all the meal preparers, caregivers for Annie, gardeners, organizers, card writers and prayer warriors. You are God's hugs to us!
By this all people will know that you are my disciples, if you have love for one another." John 13:35
Love,
Jean
1. That she get in to see her new neurologist (who is close by in Woodinville) asap.
2. That her appointment with the new vision therapist next Tuesday shows exactly what her vision capability is--and that her vision is completely healed. She is tracking well, and looks clearly at you. Her eyes are much "brighter" than in the hospital.
3. That her Addison's remain stable. She seems to be dumping a little more fluid...which is a concern to me. I'll be in touch with her doctor again today.
4. That her "core" muscles strengthen. Annie is getting stronger, but needs more strength to sit up by herself. Her arms are still flailing around, and she needs her "spatial perception" in her brain healed.
5. For her to TALK!
Praise God for:
1. Her sleeping well at night, and only getting up for diaper changes.
2. For the progress she's made so far in her vision, and ability to stand with more strength.
3. For her great head control.
4. For Bill. He is the total bomb.
5. For my kids. They are trying very hard to roll with this.
6. For all the meal preparers, caregivers for Annie, gardeners, organizers, card writers and prayer warriors. You are God's hugs to us!
By this all people will know that you are my disciples, if you have love for one another." John 13:35
Love,
Jean
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