October Eve

Well, I promised another detailed update next time, so here it is...get a cup of coffee and sit down.:)

1. Annie is more "at home" in her body. I don't know how to explain this, except that she just seems more "normal" in the way she uses her legs and feet. For example, I don't have to use the bath chair anymore in the bathtub because she can sit in the tub without slipping around. First, she sits on my lap while I sit on the side of the tub, and then she reaches with her toes to touch the water, to see if it's the right temperature before I lower her into the tub. Reaching in with her toes is a subtle improvement in her awareness of where her body is and how to make it work.

2. Annie taps her shoes on the floor when she sits in her chair at school. Her preschool teacher sings a greeting song to the tune of Frere Jacque, (which Annie used to sing), and it goes: "Where is Annie? Where is Annie? Stomp Your Feet, Stomp Your Feet." Well, last week, Annie was anticipating her teacher saying, "Stomp your feet," and she began to tap her shoes on the floor after the teacher said, "Where is Annie?" So--both memory and motor-planning were at work there.

3. Annie can stand up when I ask her. This is huge. Especially when attempting to potty train her again. "Please stand up so Mommy can pull up your pants." Standing on command is a BIG thing.

Please keep praying that:

1. Her seizures be controlled--or HEALED! She usually has at least 4 head drop seizures a day. We are still weaning up on one drug. Pray that it works to stop her seizures, and that we can begin to wean down on the other 2 anti-seizure drugs she's already on. I really want to quit the seizure meds that AREN'T working, but that ARE causing cognitive slowing.

2. She regain functional use of her arms and hands. She doesn't naturally use her arms and hands, unless prompted to. So she doesn't reach to get toys, (unless they are right in front of her hands on the floor), and if she would fall, she wouldn't catch herself with her arms and hands. Now, she CAN hold a sippy cup with her hands and she can lift up the sippy cup to drink it--but not without alot of guidance and prompting. So please pray that the functional use of her arms and hands keep coming along, and that we do all we should here at home to help her do that.

3. The school find a nurse for her. There is a person who is interested in the position, but the paperwork is going to take a while to clear--please just pray that the nurse get to know Annie quickly, and that it is a good fit for all.

4. The therapy place can schedule LOTS of hours for her. Cascade Children's Therapy is a busy place, and we are in line behind alot of other kids. We have 2 hours so far a week, and really, I'd like to just move into the place so she could have as much therapy as possible. I have to say, Annie & I miss Beth, Debbie & BJ. from Rehab w/o Walls. We were spoiled having them come to the house so much. :-(

4. Strength, endurance, wisdom, and God's peace for us. I know you guys pray for these things, because I feel the answers to your prayers. Just please keep them coming. I just really appreciate your prayers for us.

Have a good week and enjoy the colors of the falling leaves. I love autumn.

Jean

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love. Thomas Chisholm

There's a song Annie used to sing in her Sunday School class:
"My God is so great, so strong and so mighty, there's nothing my God cannot do!
My God is so great, so strong and so mighty, there's nothing my God cannot do!
The mountains are His, the rivers are His, the skies are His handiwork too-
My God is so great, so strong and so mighty, there's nothing my God cannot do--FOR YOU!"

So I was singing this to Annie yesterday, and she smiled when I said "For YOU!" She is such a sweetie pie. Anyway, in thinking about Annie's illness, and all the stuff that's happened in the last 8 months, I think God has been trying to train my mind to be more eternally-focused, and less preoccupied with the here and now. I have had to try to trust Him whether or not I understand or agree with what's happening--as if I could change any of it! The comfort here is that one way (here on earth) or another (in heaven), Annie will be healed. This situation is particularly difficult because of her youth, but, in fact, ALL of our bodies get old and die. And when we know Jesus, we know when we get to heaven we'll get a new body.

Sometime last year Annie asked me how Jesus could be in heaven AND in her heart at the same time. Hmm. I explained that Jesus is at the right hand of God according to the Bible, and it's God's Holy Spirit who lives in us and helps us when we trust God to save us from our sin. That's why the Spirit is also called the "Comforter."

Jean

For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, if indeed, having been clothed, we shall not be found naked. For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee. So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight. 2 Corinthians 5:1-7

Good Morning

Yesterday I took Annie to the doctor to make sure she didn't have an ear infection and that her chest was clear. After being sick as a dog on Sunday, and then giving her stress doses of hydrocortisone, she really perked up, and didn't seem to have much of a cold at all. But I had already made the doctor appointment, so Andy & I took her in. She's 45 lbs. and 45 inches tall. Huge for a 4 1/2 year old. She was 33 lbs. in January when she had her initial seizure--we must be feeding her Miracle-Gro. I know you guys were praying that her cold go away--she is much better today. She even slept through the WHOLE night last night!

Preschool is going well, but they're having some trouble finding and hiring a nurse to work on-site for her, which is something that is necessary because of her medical issues. So I've been going to school with her. It's been good for me to be able to coach her aide, teacher, and therapist--she's not the easiest kid to figure out because she doesn't talk yet.

Her therapists from Rehab Without Walls finished their work with her last week. It was pretty sad to say goodbye to these wonderful women who have worked with Annie for 6 months. You bond with people who have walked with you through the worst time of your life. They were such a huge help, great source of information and comfort to me.

This week, we start out-patient therapy with Cascade Children's Therapy in Mill Creek. They have an excellent reputation, and I'm looking forward to getting started with them. Hopefully, Annie will adapt quickly, and move along in relearning walking, eating, talking, yelling at her brothers, etc.

Jean

Today's Lesson

Usually after praying intensely about something, I get a fresh perspective about whatever it is I've been praying about. And after spending the day Friday praying for Annie, I think one of the things God reminded me is that there's alot more going on here than just her health. And, much of what God wants to do here probably doesn't have anything to do with Annie--it's just that she is who God is using to get our attention.

When she first got sick in January, one of the Bible verses that came to mind is James 1:2-4: "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing." So, of course, after praying all day on Friday, and having Annie wake up yesterday with a head cold and still not being able to talk reminds me AGAIN of that verse.

I will continue to pray for God to heal Annie--which I need to appreciate that He is doing, although not on my time schedule--but I think I'm going to appreciate more the things He's teaching me along the way. And I'm not unaware that that is EXACTLY what some of you prayed for on Friday!!

So what did He tell you?

Jean

‘Call to Me, and I will answer you, and show you great and mighty things, which you do not know.’ Jeremiah 33:3

Prayer Concert

"Beware in your prayers, above everything else, of limiting God, not only by unbelief, but by fancying that you know what He can do. Expect unexpected things, ‘above all that we ask or think’. Each time, before you Intercede, be quiet first, and worship God in His glory. Think of what He can do, and how He delights to hear the prayers of His redeemed people. Think of your place and privilege in Christ, and expect great things!" Andrew Murray


Thank you all so much for your hours of interceding for Annie today. I don't know what God has in store for us, but I do expect it is above all we ask or think!

Jean


Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen. Ephesians 3:20-21

Twenty-six years ago today, Bill and I were saying "I do" in the prayer room at Calvary Chapel in Costa Mesa. Time flies when you're having fun, huh? We are thankful for God's blessing on us and our kids, and pray for 26 more years--at least--together.

Annie is still having trouble sleeping. I feel like a zombie this morning. The doctor said to let him know if the sleep med doesn't work. I should e-mail him a picture of me sitting here now and he could see for himself how well it's working.

Monday we went to the ophthamologist at Children's. He said her recovery was remarkable. I told him that many people prayed for Annie, and God has healed her eyesight. He talked about how the brain has the capacity to recover function after brain injury--and my thought (in the elevator leaving the hospital, of course) was: "Who invented That?"

So, as we continue to knock on heaven's door, my good friend, Gretchen, who frequently posts encouraging comments here, has offered to schedule a prayer day for Annie this Friday, the 21st. It's the 8-month mark since her initial seizure. If you'd like to join in, go to www.gretchen-quantumleap.blogspot.com and sign up in the space below Annie's story. I know you all having been so faithful in your prayers for her, but Friday you can feel like you're at a concert of prayer.

Jean

Therefore, confess your sins to one another, and pray for one another so that you may be healed. The effective prayer of a righteous man can accomplish much. James 5:16

Sunday evening...

I started to respond to my sister Rebecca's post, but as I was answering her question, I started to get long-winded, so I figured I'd just write in another post. So:

The Clonidine patch change was smooth as silk. God heard your prayers.:) Her BP is on the higher side of her "low," but I think it's okay. We've also been trying a new sleep med, but it doesn't keep her asleep, and it makes her drowsy all day. I think I'm going to ditch it. I have a love/hate relationship with drugs. I can understand people who just throw them all down the drain. (Don't worry, I'm not going to do that--yet.)

Changing the subject back to prayer, if you have a minute (or 30) check out our Sunday morning messages by Pastor Jeff from the last few weeks. Here's the address: http://www.northlakecc.org/sunday.html. They have been a real encouragement to me.

Jean

Jesus Doeth All Things Well

Again, departing from the region of Tyre and Sidon, He came through the midst of the region of Decapolis to the Sea of Galilee. Then they brought to Him one who was deaf and had an impediment in his speech, and they begged Him to put His hand on him. And He took him aside from the multitude, and put His fingers in his ears, and He spat and touched his tongue. Then, looking up to heaven, He sighed, and said to him, “Ephphatha,” that is, “Be opened.”
Immediately his ears were opened, and the impediment of his tongue was loosed, and he spoke plainly. Then He commanded them that they should tell no one; but the more He commanded them, the more widely they proclaimed it. And they were astonished beyond measure, saying, “He has done all things well. He makes both the deaf to hear and the mute to speak.” Mark 7:31-37

The news for today

After dinner this evening, Bill and I took Annie for a stroll around Mill Creek Towne Center--the place to watch people who spend too much time on their tans, teeth, and cars, and a cheap date for us.

So, what are the answers to prayer today? Well, she only got up once last night, so I woke up feeling like a human. She is using her legs more--when she was sitting in her chair at school, she was wiggling them around, which is something new. She grabbed her sippy cup with both hands today, and she is learning to scoot down the stairs on her rear. Her aide at school encourages her to taste a cracker at snack time, and so far, she hasn't gagged and thrown up.

I wasn't as lucky this morning as I was getting her ready for school. I brushed her teeth, and then put a new flavor of Chapstick on her lips. Apparently Orange Creme isn't her cup of tea, so we got a second look at her breakfast. Fortunately, I've gotten pretty quick with emesis basins, so we were able to save the outfit I had just put on her. But I didn't freak. God is giving me patience.


Jean

The LORD will perfect that which concerns me;
Your mercy, O LORD, endures forever;
Do not forsake the works of Your hands. Psalm 138:8

I'm Impatient

While I was getting Annie dressed today for school, I asked her to lift up one leg to put on a pair of pants (she did right away) then I asked her to lift up the other (she did right away), then I told her to sit up so I can put her shirt on (she did immediately). So, I know she understands what I say to her. This tells me that in the world of brain injury, she has "receptive" language, or the ability to understand what you say.

What she doesn't have yet is "expressive" language, or the ability to speak. These past two weeks we've seen remarkable progress in her ability to communicate with grunts and yells about what she wants, but no words yet. I know these grunts and yells are evidence of the neurons and axons and dendrites making connections again--especially since she can make sounds on command, which is more than she could do a month ago!

But--please keep praying for God to help her:

1. Say the words that are in her mind
2. Not have an aversion to food.
3. Use her arms and hands. Not have tactile defensiveness in her arms and hands.
4. Walk.
5. Have no seizures.

We continue to practice standing, walking, tasting food, drinking from a sippy cup, swinging and riding the bike. But we really need another boost from God--I am so impatient.

Jean

Hear, O LORD, when I cry with my voice!
Have mercy also upon me, and answer me. Psalm 27:7

And one more thing...

Today's visit with the neurologist went very well. He spent a lot of time with us reviewing what the best options are for controlling the seizures without the side effect of cognitive slowing. The stuff she's on now has slowed her cognitive recovery, so like I mentioned in a previous blog, we're changing it. All this takes time, but we're already seeing some improvement in her communication. She still is having about four seizures a day though--"little" drop seizures that are only a second or two long. Tonight, however, she also had a weird seizure where her eyes rolled back into her head for a second. So, please pray that we don't start going in the wrong direction.

On a more positive note, the doctor mentioned that when he remembers what her brain MRI looked like in January, he is surprised at how well she's doing. God has knit her brain back together in so many ways--and I am manic in thanking Him for what He's done, while begging Him for more. I don't want to sound ungrateful!

And one more thing, could I ask you to pray that she sleep through the night? One of the side effects of the new med is that it is a stimulant. I think I already wrote this. Feels like Groundhog Day. But it keeps her up all night. And me too--one of the reasons I'm repeating repeating myself. The doctor suggested that we adjust the time we give it to her so that it's not so close to bedtime, so we'll try that.


Jean

I will both lie down in peace, and sleep;
For You alone, O LORD, make me dwell in safety. Psalm 4:8

School is Cool

Annie's first day at preschool was great. Getting her out the door was a challenge, because the bus came before I had gotten her out of bed, but since the school is right around the corner, and her aide had come to our house to ride on the bus with her, we just finished getting her ready and drove in our van. So her aide, Tonya, and I, strolled her into her classroom, where there were 9 other special-needs kids and a variety of adult helpers, teachers, and therapists. It was a busy place, and Annie seemed to be happy to take it all in. Her teeth grinding "stress outlet" waxed and waned through the morning, but overall, I think she enjoyed watching all the kids. Her teacher, therapist, and Tonya obviously love kids, and I think Annie will form a good bond with them.

At snacktime, Tonya offered her a cracker to taste, but she just wanted to watch her friends eat--she wasn't into the food thing herself. It'll be good for her to have all of the routines of school: the ride on the bus, the playtime, games, circle-time of songs, snack-time, sitting on the potty time. Routines that'll help her move along in her development.

School is Monday-Thursday in the mornings. Today we're off to Children's again to see the neurologist. I'm thinking it would be a good day for God to heal Annie.

:)Jean

“Behold, I am the LORD, the God of all flesh. Is there anything too hard for Me?" Jeremiah 32:27

The first day of school...

...is tomorrow for most of my kids--for Annie it's Thursday, because she's got doctor appointments down at Children's most of the day. But, yes, Thursday's the big first day at preschool. I'm not too worried or anything. The short bus picks her up here at the house, and then my last little kiddle goes to school. Speaking of short buses, I need to read a book called, oddly enough, "The Short Bus: a Journey Beyond Normal," by Jonathan Mooney. Have any of you heard of it? I guess the guy graduated from Brown University after conquering all the emotional and mental trauma of having been labeled "less than" all his life.

Anyway--Annie has been expressing her wants, needs and desires LOUDLY the last few days. It's great...I think. She can now "tell" you that she wants water, she wants to go down the stairs, she doesn't want orange juice, she does want to go to bed, she doesn't want to practice walking, she does want to ride her bike outside of the backyard. Suddenly communication is not a problem. Now to put words with the motions.

Jean

Then they brought little children to Him, that He might touch them; but the disciples rebuked those who brought them. But when Jesus saw it, He was greatly displeased and said to them, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of God. Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it.” And He took them up in His arms, laid His hands on them, and blessed them. Mark 10:13-16