Ahh Choo

Annie woke up with clogged sinuses this morning, so we bagged school and therapy, and drove down to the doctor to say hello. Her ears & chest are clear, so we'll just wait this bug out and see what happens. I need to get flu shots for everyone in the house soon. By the time I think about it each year, it's pretty late in the game, but we'll get them anyway.

Let me give you a brief update:

Sleep: We're still getting up with her for an hour each night around 3 AM. You'd think after the seventh kid I'd have this sleeping thing down. I do actually--it's Annie who needs to be remediated.

Blood Pressure: It's been down to normal ranges occasionally, and down to reasonable ranges usually--an answer to prayer!

Seizures: She has alot of them when she's got a cold. I think this cold is the second one this month. Not good.

Nurse at School: We still don't have one, but I'm rethinking the whole school thing. She's getting sick too much. Pray that I have wisdom about what to do.

Other stuff: Annie continues to smile when I sing her favorite songs, and she gave Bill a huge grin the other day...I forget what for. She screamed alot this morning, but was much more calm this afternoon. Except when I made her do some exercises. I really need to alert the neighbors when we start doing exercises.

Anyway--not much earth-shattering news. Thanks for praying that she get over this cold, and that she sleep...and thanks again for all your posts and prayers. :)

Jean


Frail children of dust, and feeble as frail,
in thee do we trust, nor find thee to fail;
thy mercies how tender, how firm to the end,
our Maker, Defender, Redeemer, and Friend.
Robert Grant

Seven years ago today God miraculously and suddenly healed Bill after he suffered from the parkinsonism, PSP, for 3 years. Having that experience is now, for us, a mixed blessing. We know from personal experience that God can heal miraculously. But we're also reminded that God is sovereign over the universe, our lives, our health, and our kids. This isn't an easy time. We sure appreciate your prayers as we walk through this.

Jean


God sometimes shuts the door and shuts us in, that He may speak, perchance through grief or pain, and softly, heart to heart, above the din, may tell some precious thought to us again. Anonymous

Nurse/Paraeducator wanted

Yes, we still are looking for a nurse/paraeducator for Annie. At least three days a week (Mon./Tue./Thurs.) in the mornings from about 8:30-11:30. (We added an hour of physical therapy at Cascade on Wednesday mornings.) This person would be helping Annie learn to activate toys, walk, do crafts, interact with the other kids during "circle" and "table" times, as well as be able to identify and treat any medical problems that might crop up.

Yes, this is my official ad. Please let me know if you or anyone you know might be interested.

Thanks!

Jean

“So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened." Luke 11:9-10

Good things

And the answers to prayer this week aaaaare:

1. Lower blood pressure--it's been lower the last few days.
2. Normal electrolytes--so far, so good!
3. Head drop seizures--two today, one yesterday...keep praying. The doctor wants to see zero head drops for a month before we start weaning off zonegran.
4. Lots more facial expression--this is THE major answer this week. She is smiling, and her eyes are twinkly. This is a huge answer to prayer. She even grins when I say silly things, which is more than the blank stares I get from my other kids. Juuust kidding.
5. She is using her hands and arms more--but way more is needed.

So--some really good changes this week. But along with more happy expression is coming more screaming. I'm not sure why she feels compelled to crank up the volume, but it is hard on the ears. Again, please pray she nix the noise. The other thing we still need help with is SLEEPING. We really need some uninterrupted sleep. Is that an unreasonable request? I know some of you would like some uninterrupted sleep too. But, seriously, it's would be very cool if Bill and I didn't look, act and feel so pathetic in the morning.

Changing the subject a little... I'm starting to think about the holidays--which I have to admit triggers more melancholy than cheer at this point--so I asked the kids to come up with their Christmas lists. I limit the kids to three things, one of which they might see under the tree if it costs less than an IPOD or a cell phone. Olivia wrote something up pretty quick, and gave it to me. I thought, "Great, short list, probably means reasonable requests..." Then I read it: "Olivia's Christmas List: I want Annie to be healed." Hmm.

Jean


Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him. 1 John 5:14-15

The north wind doth blow and we shall have snow...

It's pretty windy outside tonight. I always appreciate when the wind does my leaf raking for me.

Big brother Jack and I took Annie down to Children's yesterday for her rehab checkup. After a kid goes through inpatient rehab, the doc and therapists like to see how things are going 3 months after discharge. If you remember, we were there on the rehab floor for a month from May 15 through June 8. I think everyone was happy to see Annie's progress since then, and Dr. Jaffe seemed pretty impressed with her attention and awareness. It's encouraging to hear people who haven't seen her in awhile comment on her improvement. I told the doc that my blogging buddies have been praying their guts out, and that's why she's doing so well.

So far this week, she's had maybe one or two head drops in 3 days. Yesterday I didn't see any; today I didn't see any, but Olivia did. Bottom line, though--the head drops are dramatically reduced. Because of that, and the fact that the new seizure med is working so well, and God is healing her, she is much more alert, interactive, and vocal. She was playing with a switch toy today at school, placing both hands on it and activating it repeatedly. She played with her xylophone piano at home tonight with both hands, intentionally and repeatedly. She was playing with her hair with her left hand, and rubbing her eye, and scratching her ear. Just normal movements I haven't seen her do in almost 9 months.

Also--we got her electrolytes checked again on Tuesday, and they're back to within normal range. We'll be following that closely every week for awhile. The bad news today, though, is that Annie's blood pressure is high again. Please pray that it comes down and stays down.

Here's a short prayer request list to post on your dashboard:

1. Please pray that she sleep through the night. (She has two night's in a row!)
2. Lower blood pressure
3. Normal electrolytes
4. No head drop seizures
5. More facial expression!!!
6. Increased use of hands and arms. (If she can start using her hands and arms, she could begin using a walker.)
7. Talking, talking and more talking. WORDS!!

Thanks again for listening and praying. I am indebted to you guys every day.

Jean

For since the beginning of the world
Men have not heard nor perceived by the ear,
Nor has the eye seen any God besides You,
Who acts for the one who waits for Him. Isaiah 64:4

Same song, second verse

Sometimes the details I write about our never ending medical crises bore even me. Consider that fair warning.

The newest kink in Annie's little body has to do with potassium; specifically--too little of it. We had a routine blood draw on Thursday, (Miss Fran got it on the first try--it pays to have friends in lab places), the results of which showed low potassium. Low potassium (like high blood pressure, the change of seasons, or the wrong radio station) can cause nausea, as well as about 5 other hideous symptoms. May have been why Annie was looking so pekid last week. Anyway, our GP & the Endo doc at Children's conferenced over the phone (always a bit of an alarm when more than one doctor weighs in), and gave us some instructions to rectify the situation. I think she's a bit better today, and tomorrow we'll go back to Miss Fran to verify that her potassium is where it should be.

This episode is another weird Addison quirk. All of your electrolytes are delicately balanced by your normal endocrine system. But with hers, it's all controlled artificially with medications. Too much medication whacks her out. Too little whacks her out. The barometer falling whacks her out. And again, this just gets more complicated because she can't TELL me what feels icky.

But the good news is she's trying REAL hard to let her needs be known, which is the other subject we'll tackle tonight. How loud can Annie scream? What octaves can she reach? When do the neighbor's ears start to bleed? It's not that I'm ungrateful for her efforts to communicate. I just wish she'd be a little less emphatic. Tonight Annie's blood pressure seemed low compared to everyone else's in the house.

I finally decided to help her take a walk around the house thinking that maybe she'd let me know what she wanted when we got close. I started getting warmer when we walked down the hall. I hit the jackpot when we got to the bathroom door. She wanted to take a bath.

Jean


Great peace have those who love Your law,
And nothing causes them to stumble. Psalm 119:65

Annie's college friends

Four Seattle Pacific University students keep up with Annie's blog: Alexandra, Allyson, Meredith and Sara. Sara is the daughter of the owner of the roofing company where Bill works now. They have been touched by the circumstances of Annie's illness, and came up with a wonderful idea to help educate people about Addison's disease, and help families at Children's Hospital.

These compassionate and ambitious young women are spearheading the "Student Charity Golf Tournament" to benefit Children's Hospital and Regional Medical Center "uncompensated care" and the "Addison's Education Program."

"How?" you ask. Well, the "Uncompensated Care" division at Children's Hospital provides financial assistance for families in need. And because Seattle Children's Hospital is a regional hospital serving families from Alaska, Montana, Idaho and Washington, some of these families need help with housing, gas, and food while their children are hospitalized. This golf tournament will help make a huge difference in these families' lives--so that their attention can be focused on their kids, and not on the enormous costs of being there.

The Addison's Education Program is a way to help medical professionals identify this easily treated disease. Because it's a relatively uncommon disease, and downright rare in children of Annie's age, the diagnosis is often missed, with devastating and sometimes fatal results. However, properly diagnosed, Addison's is easily treated. We are hoping to provide educational materials for physician's offices and emergency rooms to highlight the symptoms so that people can get the timely care they need.

The Seattle Pacific University Student Charity Golf Tournament is at Harbour Pointe Golf Club, Mukilteo, Washington, on November 10th, 2007. Details are on www.annaleesullivan.org.

I have to tell you how impressed I am by the actions of these young women in putting this golf tournament together. I'm looking forward to seeing the fruit of their labors!

Jean

Over the river...

And through the woods--Today we all drove down to Grandmommie & Poppie's for the first time since last Christmas! Bill's parents live about 60 miles away from us, and since January, Annie hasn't been able to do long car rides because of her seizures. So today we decided to take the plunge and drive down to celebrate their 64th anniversary, as well as both of their October birthdays. It felt so good just to sit and catch up with everyone around their kitchen table, and seeing Annie curled up in Grandmommie's arms while they rocked together made the day complete.

Jean


What children need most are the essentials that grandparents provide in abundance. They give unconditional love, kindness, patience, humor, comfort, lessons in life. And, most importantly, cookies. ~Rudolph Giuliani

Trial and Error

Do you recall Annie's incessant throwing up episodes I complained about a few weeks,months or eons ago I can't remember which? And how they resolved when we stopped feeding her at night? You know where this is going, don't you? Yes, when we started feeding her again at night this last week because feeding her at night keeps her asleep--the trade-off is that her stomach capacity somehow reconfigures, so that her 5 PM feeding always ends up on the carpet.

So, of course, last night Bill and I agreed, "Let's not feed her at night anymore because she's so gaggy/vomity at 5 PM." And, even though we gave her a little formula snack before bed, she was up at 1 AM. So I gave her another snack of formula at 1:10 AM, thinking that SURELY this will help her go to sleep. But NOOoooo. She was still up and down until 3:30.

So guess what we're going to do tonight? Feed her through the night. And then tomorrow at 5:00 PM, we'll have the bucket ready.

Jean

...Casting all your care upon Him, for He cares for you. I Peter 5:7

Quick Update

Annie woke up this morning quietly...after another long night's nap. Praise the Lord. This sleeping thing is so cool. AND, yesterday, she had only ONE head drop seizure (that I counted). Now this morning, she's already had one, but really, if the reason she was having so many seizures was because she was so tired from no sleep, and if she doesn't have many--or any--because she IS sleeping--that's amazing.

Thanks again for ALL your prayers--God has answered once again.

Jean

“ I cried out to the LORD because of my affliction,
And He answered me.
“ Out of the belly of Sheol I cried,
And You heard my voice. Jonah 2:2

The morning news

Today at 5:45 AM, Annie woke us up from a dead sleep screaming her lungs out. No reason--just wanted to make sure the whole neighborhood knew she was awake. So after feverishly trying to determine that no bones were broken, and that she wasn't bleeding profusely from any orifice, Bill took her into the living room and rocked her for awhile. His ear is still ringing from the scream in his ear as they were walking down the hallway. The good news is that last night she slept again--through the whole entire night. Second time in a row. We decided to give her a slow drip feed through the night, and it seems to be working. That and the church prayer chain--and YOUR prayers.:)

We also bumped up to 4 hours of rehab therapy at Cascade. That's a really good thing. They're putting her through her paces, and she's already showing improvement in her walking, standing, screaming and tolerance of touch on her arms and hands.

School is going well, too--but no nurse yet. Please keep praying for a good nurse to surface.

The head drop seizures are still going pretty strong. We've gone from 4 a day to about 8. I think they may decrease with her getting more sleep...but I need to pray more too.

Jean

Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. Hebrews 12:1-2