Take a look at the new video that Bill put up that shows Annie eating "Trader Joe's Veggie Sticks," which are crunchy, salty, and melt in your mouth, not on your hands. I took the video yesterday while OT Beth was working with her. Annie hasn't eaten much by mouth at all this whole year, and if she has, it has been under duress. This past week or so, she has taken leaps and bounds in her DESIRE and ability to put food in her mouth, then chew and swallow. This is a huge answer to prayer--H.U.G.E.
Jean
Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over. Psalm 23:4-5
Saturday, January 26, 2008
Monday, January 21, 2008
One Year Ago...
...things were a lot different than they are today, and that's a good thing. I went into Annie's room this morning, secretly hoping that she'd look up at me and say "Good morning!" But what I got was almost as good--she stretched her right arm waaay over her head, and turned and looked up at me while I gave her her morning medicine. Last March, when we brought her home from the hospital--after 52 days--she couldn't do a thing with her right arm. It just flopped from side to side.
God has brought her a long way. He's brought US a long way. Just think about it--last January the doctors told us that they didn't know if she would ever again see, hear, move, or understand what we were saying if she did hear! Today she can see, her hearing is perfect, she has regained much use of her body and continues to make more "normal" movements, and when we say things like, "Annie, lay down so I can change your pants," she lays down!
Bill even noted yesterday that her laughing and giggling--a new thing this week--is associated with funny things. So we can tell she has a sense of humor again, which, of course, is a prerequisite to living in our house. And although I'd still trade this past year in a minute for, say, a month in Tahiti, I get that sometimes God has another route down the yellow brick road planned for us. And He has held our hand as we walked through each day, giving us strength, comfort, healing, and hope--largely through answers to YOUR prayers.
Thank you and thank God!
Jean
Praise God from whom all blessings flow,
Praise Him all creatures here below,
Praise Him above ye heavenly hosts,
Praise Father, Son and Holy Ghost.
God has brought her a long way. He's brought US a long way. Just think about it--last January the doctors told us that they didn't know if she would ever again see, hear, move, or understand what we were saying if she did hear! Today she can see, her hearing is perfect, she has regained much use of her body and continues to make more "normal" movements, and when we say things like, "Annie, lay down so I can change your pants," she lays down!
Bill even noted yesterday that her laughing and giggling--a new thing this week--is associated with funny things. So we can tell she has a sense of humor again, which, of course, is a prerequisite to living in our house. And although I'd still trade this past year in a minute for, say, a month in Tahiti, I get that sometimes God has another route down the yellow brick road planned for us. And He has held our hand as we walked through each day, giving us strength, comfort, healing, and hope--largely through answers to YOUR prayers.
Thank you and thank God!
Jean
Praise God from whom all blessings flow,
Praise Him all creatures here below,
Praise Him above ye heavenly hosts,
Praise Father, Son and Holy Ghost.
Friday, January 18, 2008
Giggles and Nibbles
Yesterday, Annie's OT, Beth, brought some "Tim's Cascade Sweet Maui Onion Ring Snacks" to see if Annie would bite, and boy, did she! These snacks almost melt in your mouth, so they were a pretty safe bet to try. And, Annie, a girl after my own salty heart, took quite a few bites, chewed them up and swallowed like a big girl! What a leap forward!
Then, last night while Bill was tucking her into bed, Annie smiled and then giggled at something he said. He always was a Funny Guy, and now, Annie thinks so, too.:)
Thank You, Lord!
Jean
I will praise You, O LORD, with my whole heart;
I will tell of all Your marvelous works. Psalm 9:1
Then, last night while Bill was tucking her into bed, Annie smiled and then giggled at something he said. He always was a Funny Guy, and now, Annie thinks so, too.:)
Thank You, Lord!
Jean
I will praise You, O LORD, with my whole heart;
I will tell of all Your marvelous works. Psalm 9:1
Monday, January 14, 2008
If all goes well, Annie should begin the Ketogenic diet sometime in February or early March. She may be the first kiddo with Addison's who's been on the diet. Always writing the book, here, you know. I guess that's a common thing at Children's--lots of kids who are medical mysteries hang out there. Today we were there for a quick check-up in the Nephrology clinic. Her blood pressure tends to still be on the high side, but we're working on that, and will probably adjust her medicine again.
She had a good day today--again--and continues to be more connected in her responses and eye contact. Her eyes track more quickly to people and conversations, and she smiles easily when I talk to her. It's just so good to see her facial expression return.
Millie, the Boston terror, continues to convalesce, in spite of her occasional outbursts of running and jumping at her Sullivan litter mates. The vet asked me if I was keeping her immobile. Uh, I didn't know I was supposed to. Confining her to her crate for long periods of time seems inhumane...but putting crutches under her arms and telling her to stay off her feet does too. It hasn't taken her long to find the soft spot in our hearts.
It's supposed to snow tonight. Of course the kids want to stay up to make sure it does so they can sleep in tomorrow.
Jean
Though we are burdened with the greatness of our need, so that our prayers are not even articulate, yet in such "inarticulate sighs" the Spirit "intercedes for us." ... C. Harold Dodd, The Meaning of Paul for Today
She had a good day today--again--and continues to be more connected in her responses and eye contact. Her eyes track more quickly to people and conversations, and she smiles easily when I talk to her. It's just so good to see her facial expression return.
Millie, the Boston terror, continues to convalesce, in spite of her occasional outbursts of running and jumping at her Sullivan litter mates. The vet asked me if I was keeping her immobile. Uh, I didn't know I was supposed to. Confining her to her crate for long periods of time seems inhumane...but putting crutches under her arms and telling her to stay off her feet does too. It hasn't taken her long to find the soft spot in our hearts.
It's supposed to snow tonight. Of course the kids want to stay up to make sure it does so they can sleep in tomorrow.
Jean
Though we are burdened with the greatness of our need, so that our prayers are not even articulate, yet in such "inarticulate sighs" the Spirit "intercedes for us." ... C. Harold Dodd, The Meaning of Paul for Today
Thursday, January 10, 2008
Annie has had a stable, calm 2 weeks or so. I'm blue from holding my breath. No head drop seizures, no throwing up, no insomnia--I'm starting to wonder where they put my kid. The sleeping thing is really nice--I put her down around 8 PM, she lays down, and bam--lights out. Even if I hear her stir in the night, she rolls over and goes back to sleep, and stays asleep until 6 AM when we give her her morning medicine. Then she briefly looks at up at us, and goes back to sleep until 8 AM or so. Thank You, Lord!
Tomorrow we go down to Children's to talk to a dietician about the Ketogenic Diet. Assuming there are no contraindications, (impressive word, huh?), we should start it as soon as they have an opening on the schedule. Remember that the goal of the Ketogenic diet is to control her seizures without medicine, so that we can have an Annie without cognitively dulling side effects. And as I said in a previous post, just lowering her dose of Keppra and Zonegran a little in December has uncovered more smiling and alot more eye contact and awareness.
Meanwhile, the therapists from Rehab Without Walls are working with Annie through the month of January. Beth, the OT, brought a gait-trainer to help Annie practice standing. Something to pray about is for Annie to use her arms and hands more, because if she can use them to hold onto the gait-trainer, she can begin walking by herself. Her aversion to using her arms and hands has been a huge barrier to her physical recovery. Please pray that God heal those connections quickly.
As always, we are so thankful for all your prayers. Please keep persisting--more use of arms/hands, and that this diet work to help her walk, talk, laugh and sing. And again, if God wants to just be done with it and heal her suddenly, I'll take that!
Jean
And behold, a leper came and worshiped Him, saying, “Lord, if You are willing, You can make me clean.” Then Jesus put out His hand and touched him, saying, “I am willing; be cleansed.” Immediately his leprosy was cleansed. Matthew 8:2-3
Tomorrow we go down to Children's to talk to a dietician about the Ketogenic Diet. Assuming there are no contraindications, (impressive word, huh?), we should start it as soon as they have an opening on the schedule. Remember that the goal of the Ketogenic diet is to control her seizures without medicine, so that we can have an Annie without cognitively dulling side effects. And as I said in a previous post, just lowering her dose of Keppra and Zonegran a little in December has uncovered more smiling and alot more eye contact and awareness.
Meanwhile, the therapists from Rehab Without Walls are working with Annie through the month of January. Beth, the OT, brought a gait-trainer to help Annie practice standing. Something to pray about is for Annie to use her arms and hands more, because if she can use them to hold onto the gait-trainer, she can begin walking by herself. Her aversion to using her arms and hands has been a huge barrier to her physical recovery. Please pray that God heal those connections quickly.
As always, we are so thankful for all your prayers. Please keep persisting--more use of arms/hands, and that this diet work to help her walk, talk, laugh and sing. And again, if God wants to just be done with it and heal her suddenly, I'll take that!
Jean
And behold, a leper came and worshiped Him, saying, “Lord, if You are willing, You can make me clean.” Then Jesus put out His hand and touched him, saying, “I am willing; be cleansed.” Immediately his leprosy was cleansed. Matthew 8:2-3
Friday, January 4, 2008
Millie is sitting on my lap as I write this, her left hind leg stretched out beside her in a big, black splint. After living here only a couple of weeks, she figured out that a good way to get extra attention is to require hospitalization. So far, it's working well for her. Here's the way it happened: last Sunday, I was holding Annie, and David was going to take a shower, so I asked him to take Millie into the bathroom with him because I thought she'd be safe in there, and she wouldn't have to be confined to her crate. Well, apparently, she didn't like being left OUT of the shower, so she jumped AT the shower door and somehow bumped her leg on the ledge between the bottom of the door and the floor. Ouch.
Bill took her to the vet, and after an exam, the vet didn't think there was a break. So we took Millie and some Advil home. Four days later, she's still limping. Took her back to the vet. The x-ray confirmed a break, so she was awarded a little black leg cast, finely decorated with a red heart, to take home. Lots of hugs later, she accomplished her mission.
Meanwhile, Rehab Without Walls started back with Annie this week. (I should ask them if they do dog PT.) Although she loudly protests her increased workload, Annie has done pretty well for being a bit out of shape. Her level of alertness, eye contact, smiles, playing with toys and general interaction has taken another step forward, too, the last few days, so that's very encouraging. Jack asked me today what I did to make her do all these new things, and I said, "Nothing--it must be God answering prayer." He wasn't put off. "Well, you must have changed her medicine or something. What did you do?" Who knows? But it's nice to have more of her back.:)
Well, that's the news for now. Check out the pictures of gimpy Millie & smiling Annie.
Jean
Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me. Civilla Martin
Bill took her to the vet, and after an exam, the vet didn't think there was a break. So we took Millie and some Advil home. Four days later, she's still limping. Took her back to the vet. The x-ray confirmed a break, so she was awarded a little black leg cast, finely decorated with a red heart, to take home. Lots of hugs later, she accomplished her mission.
Meanwhile, Rehab Without Walls started back with Annie this week. (I should ask them if they do dog PT.) Although she loudly protests her increased workload, Annie has done pretty well for being a bit out of shape. Her level of alertness, eye contact, smiles, playing with toys and general interaction has taken another step forward, too, the last few days, so that's very encouraging. Jack asked me today what I did to make her do all these new things, and I said, "Nothing--it must be God answering prayer." He wasn't put off. "Well, you must have changed her medicine or something. What did you do?" Who knows? But it's nice to have more of her back.:)
Well, that's the news for now. Check out the pictures of gimpy Millie & smiling Annie.
Jean
Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me. Civilla Martin
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