Wednesday, November 28, 2007

Back Home

Annie's back home from 2 days in the hospital getting her quarterly 3,000 mile oil change. We figure that her nausea and vomiting that landed her there might have been a result of high blood levels of a seizure med. She didn't throw up all day Monday or Tuesday. But, of course, she threw up her morning meds just now. We're pretending that didn't happen, and you can pretend you didn't read that. It's good to be home anyway.

Lots of people deal with chronic illness. Life is a challenge for all of us, but you thank God for blessings like sleeping in your own bed, and waking up to your own coffee in the morning.

Thanks for your continued prayers. We continue to need them!

Jean


God is my strength and power,
And He makes my way perfect. 2 Samuel 22:33

Monday, November 26, 2007

Class, take out your blue exam books....

Annie is the star test taker as we all know. Since arriving for her current SCH stay, she has volunteered liver enzyme numbers, blood pressure numbers (by the hour); and gastro contents for inspection.
We're upgraded to the "Medically Complex Unit" - sounds like one of those concierge floors where you get free hors d'oeuvres and cocktails between 7 & 9.
Well, it's not.
But you do get frequent visitors throughout the night who will proctor another test for you.
Will she have a longer EEG so the doc's can zero in on the head drop activity? Will she reveal the reason for her tummy upset? Is there a connection between the liver numbers and Lamictal? or is it the Hydro? Maybe it's the tube fude.

Thank you all for pitching in to cover the other kind of food for the other Sullivan's! You guys are awesome!

Aunt Rebecca here checking in with your morning update...

Prayer requests of the moment:
Health and strength-restoring rest for Jean.
Complete healing for Annie so that her outings can be to more fun places than the hospital.
Brilliant and gifted insight by the entire medical team who are laboring so faithfully to bring answers and healing to Annie.
Rest for Jean.
No more barfing.
Sparkly eyes.
Strength - and did I say REST? - for Jean :-)

Psalm 116:5-9
Gracious is the Lord, and righteous; Yes, our God is merciful.
The Lord preserves the simple; I was brought low, and He saved me.
Return to your rest, O my soul, for the Lord has dealt bountifully with you.
For You have delivered my soul from death, my eyes from tears, and my feet from falling.
I will walk before the Lord in the land of the living.

Sunday, November 25, 2007

Thank you for checking up on Annie, and for praying for her. I am so grateful to you, and amazed that God keeps bringing her to your minds to pray for her. We feel your prayers all through the day. And night!

A couple of days ago I wrote about her EEG she had on Tuesday, and that the head bob she had was NOT a seizure. We're going to try to figure out what are really seizures and what are?? Because if any of her head bobs or drops are not seizures, and should be treated in other ways besides with anti seizure medicine, then I think we're going to be miles ahead. Please pray that the doctors have clear understanding about this. There are a number of conditions that can mimic seizures, and of course, if she's not having any--or as many as we thought--then we need to treat them differently.

We have been struggling for the last week or two with keeping her stomach contents INside. We took her to the doctor on Friday--good thing they were open and weren't at the mall--and then down to Miss Frannie's lab to get some blood tests done. This is just a real headscratcher as to why she gets into these jags. Pray that she STOP throwing up. We might need to get into the gastroenterologist (add that doctor to the list) to find out if she has some weird hernia thing or ??

Let's talk about something else. How 'bout those Sonics? Okay, maybe not.

Annie is going to watch her dad and brothers get up on the roof today to hang up some Christmas lights. They'll play rock, paper, scissors to see who gets to holds the ladder and who gets to climb up on it.

Jean


This is how the birth of Jesus Christ came about: His mother Mary was pledged to be married to Joseph, but before they came together, she was found to be with child through the Holy Spirit. Because Joseph her husband was a righteous man and did not want to expose her to public disgrace, he had in mind to divorce her quietly. But after he had considered this, an angel of the Lord appeared to him in a dream and said, "Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins." Matthew 1:18-21

Wednesday, November 21, 2007

Happy Thanksgiving!

This Thanksgiving, I am thankful that God is in control of every detail of my life. I think I have so much control of stuff, but you know something? I don't. It's a free-ing thought. Even as I think of the past year, I know that God woke us up on January 21st at exactly the moment He ordained. Annie didn't lose one more brain cell than He allowed. Does that sound weird? Maybe, but it's true. In the Old Testament, Job said that he knew that God can do everything, "And that no purpose of Yours can be withheld from You." (Job 41:2) God has a purpose in this whole episode--and in every detail of our lives--and because God loves us, we can trust Him even when it does not make sense to us.

God wants us to trust Him, to put our hope in Him. He who holds the universe in the palm of His hand, can't He also be trusted to hold us, too?

So here's a couple of details from this week: Annie had an EEG to assess the seizure activity in her brain, and to try to understand the seizures she's been having. Good news--the little head bobs she has apparently are not seizures. But the big belly flops are. So, that means her seizures are more on the order of 2-3 a day rather than 10-15. Praise God for that news. What are the head bobs? Who knows?

She also got an echocardiogram to monitor the effect of her high blood pressure on her heart--results forthcoming. We also went to the Endocrine doc today. It was a good visit...I won't bore you with the details.

Last piece of news--Annie smiled at me last night, and looked like she was going to break into a laugh. So I told her that I thought so, and she said, "Yaaaaah!" What? A verbal response? You bet. And she made another verbal response to me again today. This is a major praise. Also, she is bouncing more and kicking her legs more, and just getting a little more mobile while playing with her toys. The next thing you know, she's just going to get up and walk!


Jean

Enter into His gates with thanksgiving,
And into His courts with praise.
Be thankful to Him, and bless His name.
For the LORD is good;
His mercy is everlasting,
And His truth endures to all generations. Psalm 100:4-5

Sunday, November 18, 2007

Just a quick update--after celebrating Uncle Jeff and Cathy's wedding in Tennessee this weekend, I'm home, exhausted, and happy to be back with Bill & the kids. Bill held down the fort while my siblings and I got to spend some time together at this momentous occasion--a grand time was had by all, and we wish Jeff and Cathy the best life ever.

Bill said that Annie did something interesting while I was gone--instead of just sitting up in bed in the middle of the night and maybe coughing or gagging to get his attention, she just laid in bed and cried. Just a little different, and more aware--more like the old Annie. She also had a little "sympathy" crying this evening...I was talking to Bill about the wedding and I started to cry, (I do that alot lately), and then Annie started to cry too! Hmm.

She's still struggling with nausea, vomiting and not-so-good sleeping. Last week her sleeping was great, but last night she was up 3 times. So--please keep praying for no nausea, no vomiting and lots of sleep. Her blood pressure is fine, and her seizures were about 5 or 6 today, which is an improvement.

Anyway--I'm asleep while writing this, so I'm signing off. Happy Thanksgiving week.

Jean

Tuesday, November 13, 2007

More sleep!

Last night was the 4th night in a row Annie has slept through the night--this is just a huge answer to prayer. Even though we went up on her seizure med dose, and she was bouncing off the walls in the evening, when we put her in bed around 9 PM, she went to sleep and stayed asleep. Thank you for praying and thank you, Lord, for answering!

We went to Children's yesterday for flu shots for Annie, Jack & Olivia (I couldn't get everyone this time), and for a nephrology appointment to follow up on her high blood pressure. The doc sent us home with a 24 hour blood pressure monitoring device that checks her BP every 30 minutes. She even slept through that! What this may tell us is the relationship between her seizures and her high blood pressure--maybe that her hypertension is causing the seizures...or that the seizures are causing the hypertension. We'll see. The data may not show any clear cause and effect.

Well--thanks again so much for praying for her sleep. Please keep praying!

Jean

Sunday, November 11, 2007

Zzzzzz...

It's 6 AM, and I am happy to report that Annie is asleep! Last night, I put her in bed at 8 PM and she went right to sleep--no popping up and down to get settled. Then, she woke up to the speed racer who was LOUDLY driving up and down the street at 3:30 AM, but--went back to sleep until we gave her her medicine at 5:30 AM. I changed her, and now she is is asleep again. This might seem like interrrupted sleep to some, but for us, it's success. I am so happy that she had a good night's rest! And, of course, the not-so-hidden message here is that WE had a good night's rest too.:)

However, I am dreading going up again on her seizure medicine, which is scheduled to change tomorrow. I see a clear correlation between each higher dose, and her insomnia. After 6 days of insomnia, she usually gets used to the new dose and then sleeps through one or two nights. Then, we go up again on the dose, and she's up all night again. I looked back in her medicine/activity logs, and this started around September 7th. I think. But--I also see a clear correlation between you praying and her sleeping. So, we go up on the dose tomorrow. PLEASE keep praying that she sleep through the night even after the new increased dose.

I do have tell you again, though, how much I appreciate your prayers. We feel you praying for us at the most serendipitous times. Like--out of the blue I know someone is praying for us, and it's just the encouragement I need at the right time. It truly is a gift! And God IS working in Annie's body minute by minute. He IS healing her brain and her body! Even after having a yucky day yesterday--I won't give you the whole story of going to the golf tournament and then leaving 5 minutes later because she was screaming and looking sick--after I gave her some nausea medicine in the evening, she perked up and played with her noisy toys for a long time. She even started bouncing with the music and looked like she was going to get up and dance! (Note to self: try nausea medicine sooner in the day rather than later.)

And, oh by the way, the golf tournament was an awesome success. Bill stayed after Annie and I scooted out the door, and he said that all the participants seemed to have a great time. The rain even stopped for most of the tournament, and the sun came out! I'll have more details about it later this week. Stay tuned.

Jean

And my God shall supply all your need according to His riches in glory by Christ Jesus. Philippians 4:19

Saturday, November 10, 2007

Fore!

The SPU Golf Tournament is today, and I see out the window that it's pouring down golf balls. I guess that's why they carry those big umbrellas, and I'm sure we'll have a great time in spite of the rain. Kudos to Alexandra, Allyson, Meredith and Sara for all their leadership, teamwork, and organization in bringing it all together. I know many families at Children's Hospital will be blessed through the generosity of the participants. Thank You All!!

We are going to wrap Annie up in a big blanket and drive down to the golf club soon, so I'll make this short. We had a good week as far as physical progress: she was up on all fours at least 5 different times for about 15-30 seconds each at her OT appointment on Thursday. Getting up on hands and knees was a major milestone. Hooray!

She also is following commands more--she was playing with a spinning noisey toy with her hands, and when it got out of her reach, I told her she could still play with it with her feet. So she spun it with her toes. When she pushed it too far to reach it, I told her that if she scooted closer to it, she could still get it. She almost imperceptably scooted forward, and then was able to spin it again with her toes. She's just a regular smarty-pants.

The downside this week has been her insomnia, and her frequent--at least 10 a day--seizures. The doctor is ordering another EEG to try to figure out the next steps. I would appreciate your prayers about that--that she would sleep, and that her seizures would stop!

Thanks!

Jean


You will keep in perfect peace
him whose mind is steadfast,
because he trusts in you.

Trust in the LORD forever,
for the LORD, the LORD, is the Rock eternal. Isaiah 26:3-4

Monday, November 5, 2007

More better :)

I was thinking today about my droopy attitude this last week or so, and God brought to mind the verses in 1 Corinthians 13 about what love is and what love does. And as I was reading that love bears all things, believes all things, hopes all things and endures all things, I was reminded of how much I need God's power--I am helpless to do this Annie gig in my own strength.

So--last post I mentioned I'd like to see Annie to reach for things more. This weekend, while I was at our church's women's retreat, (yea Bill for holding down the fort!) Annie began to reach to the side--not just down in front of her. With Both Hands. Like I said in the comments of the last post, my son Taylor saw her playing with one of her toys, and pointed out that the last time he saw her--a couple of weeks ago--she didn't play with her toys like she's doing now. Thank you, Lord!!

Something else new--after Bill & I put her in her bed tonight, she kept looking behind her at the quilt on the wall. It has colorful fish on it, and she kept turning around to look at it, whereas before, she hadn't seemed to notice it. And another subtle change is her cry--sometimes when she cries it seems that she's really just sad about something...like not being able to talk. :( She's not screaming nearly as much as she had been, but this cry is a little different and a little more "aware."

One thing to pray about--her drop seizures are over the top today. I counted about 14. They're only a second or so long, but we really need them to stop. They are probably a result of the viral infection that she still has--which is yet another thing to pray about.

Jean

Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:4-7

Friday, November 2, 2007

More of everything!

It's cold outside now, so I looked in Annie's closet for the purple winter coat she wore last year because I knew it was a little big for her then, so it should fit her okay now. Her snow boots still fit her now too. The last time she wore them, Olivia and I had taken her for a walk in the snow, and she had said that her legs hurt. NOW I know that leg pain can be a sign of Addison's Disease. :(

She's still sick with her cold. Bill and I decided to take her out of preschool and now we're arranging for in-home services (OT/PT/Speech & teaching). The school district will provide some hours of therapy and instruction at home, because her going to school exposes her to too many bugs. And, unfortunately, when she's sick, she can't go to the outpatient therapy either. And when she isn't at therapy, I feel like things are stalled.

I was rereading a little of "In An Instant" by Bob & Lee Woodruff, and they wrote that a year after Bob's brain injury, they measure gains in small increments. I feel that's what we're doing now with Annie. I wish, though, that her rehab was still more intense, because I think that is what is going to help her in the long run. Sometimes I wish we just had an OT/PT/Speech team who lived in my house, who could work with her every day, morning and afternoon.

But along with what we do for Annie, the other thing to pray for is that Annie keep coming out and keep trying to do stuff for herself. I know there's an element of her own initiation that could bring about more functional gains. She is initiating playing with toys now, which is a great thing--but I'd like her to begin to try to scoot around and reach for things more. More, more, more--I'm always wanting MORE!!

Jean


Now as they went out of Jericho, a great multitude followed Him. And behold, two blind men sitting by the road, when they heard that Jesus was passing by, cried out, saying, “Have mercy on us, O Lord, Son of David!”
Then the multitude warned them that they should be quiet; but they cried out all the MORE, saying, “Have mercy on us, O Lord, Son of David!”
So Jesus stood still and called them, and said, “What do you want Me to do for you?”
They said to Him, “Lord, that our eyes may be opened.” So Jesus had compassion and touched their eyes. And immediately their eyes received sight, and they followed Him. Matthew 20:29-34