Last day of June

The fireworks started going off last night--the stands must be open now. I just LOVE celebrating the 4th of July--for 7 days each year. I hope Annie sleeps through it every night--especially on Wednesday, when the neighborhood will erupt until about 2 AM.

Annie made some nice progress in the standing-walking department this week. We're practicing alot, and both her PT Debbie, and OT Beth, were impressed with her improvement. Her use of her right hand & arm has taken a jump too. It's great that her physical abilities keep increasing--in spite of the continued issues with her seizures. We're going up on the seizure medicine dose--pray that it works & that the side effects (sleepiness) go away fast.

I was reading more about acquired apraxia of speech--which is the technical term for not being able to speak. We're doing alot of things to try to prompt her to talk, but it's slow going. Please pray that God heal that part of her brain, and help us to know what we need to do to encourage speech.

I also was reading more about emotion returning after brain injury. One woman with a traumatic brain injury wrote that her emotion didn't return until years after her injury. Again--please pray for Annie's happy emotion to return. Thankfully, she can tell us when she hurts (by crying) or when she's mad, (by yelling)--but I really am anxious to see happy emotion.

So--good news on the sitting-standing-stepping front, but more progress needed on the talking-smiling-laughing front.

Always grateful for your prayers--

Jean

O LORD my God, I called to you for help
and you healed me. Psalm 30:2

EEG

The latest EEG is better than the last one, but not without some residual weird squiggly lines. TTT, you know.

:)Jean

The best-laid plans...

...to see the opthamologist this Monday morning at 9 AM were thwarted by a Sunday evening visit to the ER. Annie's g-tube site became of concern to us when the skin around it turned a bright shade of red, and she developed a slight fever. By 1:30 AM this morning, we had given her the first dose of an antibiotic, and were finally getting everyone to bed. I couldn't bring myself to set the alarm for 5:30 to get ready and to get HER ready for the eye doctor, so we rescheduled for the next available appointment---in September. D'oh. But we did get down to Children's for some visits with Annie's rehab friends, and to get another EEG. The results of the EEG--besides the Christopher Lloyd hairdo--will be available tomorrow.

Andy went with me today while we made the rounds at the 'hostible,' as Annie used to call it. Andy--(okay, go ahead and ask the question why the heck Bill & I named one of our kids "Andy," and one of them "Annie." I never really thought of it until I they would both say, "huh?" when I called them.) Anyway, An-DEE is considering going into some kind of healthcare career beginning in his junior year of college next year, so I have a ready and willing helper for these trips to Children's. He gets to ask everyone questions, and I get another set of arms--and a good conversationalist in the waiting room.

So I was talking to Andy on the drive home about the nurse we ran into today who said, "You're the one with seven kids, right?" "Yeah, that's pretty much my identity in this world," I thought. She said, "I prayed for her and God has answered--she looks really good!" I told Andy I wish I could read all the prayers everyone has prayed for Annie. But even if I can't, the Bible says that the prayers of the saints ascend as incense before God. (Rev. 8:4) I pray that YOUR prayers ascend before God, and that He review them periodically just as a reminder that I want Him to keep healing Annie. I am aware that the God of the universe could have prevented this whole thing from happening in the first place, and we could all sit around a campfire all night and wonder why He didn't.

But even Job said in the Old Testament that he understood that God can do everything, and that no purpose of His can be withheld from Him. So I believe that even though I don't understand all the reasons why God allowed this to happen, He IS at work. And although my (or Annie's) physical health on this earth can't be my only or main objective in living life, or even my only prayer--I do continue to pray that God would heal her, and I am so thankful that you do too!

Jean

TTT

Today we had a normal day. Like most of you have. Annie didn't throw up or have a seizure, and we didn't go to a doctor's appointment or to the hospital. We worked in the yard, washed the cars, and went to the grocery store. It was a fabulous day. Before January 21st, Annie had been my grocery store companion at least three times a week, but for the last five months, I've pushed an empty cart down the aisles at Fred Meyer. I think I stopped crying about it at the beginning of April. But today Annie's brother, David, pushed her in her stroller while Taylor and I filled our grocery cart. Who would have ever thought that going to Fred Meyer would be a milestone?

It reminds me of a poem my mother had on the wall in our house when I was growing up:

Put up in a place
where it's easy to see
the cryptic admonishment
T.T.T.

When you feel how depressingly
slowly you climb,
it's well to remember that
Things Take Time. Piet Hein

Brain injuries take a long time to heal. But I keep seeing more and more of Annie--and more "normal" days. PT Debbie worked with her this morning, and I took a picture of her practicing standing. Take a look below. Annie also is really scooting around more--and I think I need to get the gate up by the stairs pretty quick.

Anyway--that's world news tonight. I probably won't update this again until after Monday. We're headed back to Children's that day for an opthamology appointment--to see what, if any, visual problems Annie has. We know she can see, but we don't know if she occasionally has double vision or ?? Please pray that God heal her vision completely. And please keep praying that she begin to talk. I get tired of just hearing my voice all the time. I'm sure Annie does too!!

Jean

Do not despise these small beginnings, for the Lord rejoices to see the work begin, to see the plumb line in Zerubbabel’s hand. Zechariah 4:10

Annie's got a new ride

Thanks to YOU! Thank you, everyone, for your way generous contributions to Annie's trike. Today my brother, Dan, received all the funds needed to order it--and cousin Scott e-mailed Rifton to see if they'd do a custom pink raspberry paint job. So, Bill will post pictures--maybe even a video--after it arrives and she takes it out for a spin. Again--thank you so much for making this happen for her. I know that riding it will strengthen those leg muscles to help her walk soon--and strengthen her smile muscles too!

Meanwhile, Annie started to scoot on her rear yesterday--and I almost missed it, except one minute she was one place and the next she was over there! She also is using her right hand alot more. We put a sock on her left hand to discourage her from using it more than her right hand, and now, lo and behold, she's using her right hand more. She also began intentionally bumping her toy aquarium to make it make noise. I bought the thing at the thrift store right after we first came home from the hospital the first time, and up to this point, all the noise coming from it has been generated by other people. But a couple of days ago, OT Beth put the aquarium right next to Annie's leg, and she got the cause (bump) and effect (noise) of it. Now she looks at it, bumps it, jiggles to the song it makes, and then bumps it again.

Good day. Pray for a good night. She's still doing laps in her bed at 10 PM, and this morning, woke up with the roosters at 5.

Jean

Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning. James 1:17

Happy Father's Day!

Today we went to church, then spent the afternoon visiting with Aunt Janet, Uncle Dennis, Aunt Susie, Uncle Rick, Grandmommie, Poppie, Sharon, Drew, Becky, Tim, and cousins Mary Bea, Sam, and Joey. Big day for Annie, and you'd think she'd come home and pass out in bed, but no, she's rolling around in there trying to get all the ants out of her pants. Hmm.

But it was a good Father's Day. I thank God for Annie's dad. It's not every guy who would dive into tube feeding, measuring out medicine, and keeping charts and graphs of stuff that goes in and stuff that comes out. Come to think of it, Bill always has been into charts and graphs.

Jean

Adaptive Trike

So the tricycle for Annie is a no-go with the insurance company. It's specifically excluded as "exercise equipment." But some of you have indicated an interest in helping purchase a trike for Annie, so my brother, Dan, has set up a way for you to do that. You can e-mail him at anniestrike@yahoo.com and he'll provide you with all the info you need. You can look up the website for the trike @ rifton.com. It's the Rustler model. And, yes, these things are dang pricey.

Obviously, we feel like she would benefit from this, not only in strengthening her muscles to help her walk, but also for the simple joy of riding the bike. And we are grateful to each one of you who participate in purchasing this for her.

Thank you!

Jean

The week in review...

I was talking to my sister, Rebecca, and reviewing some of the progress Annie's made lately, and she said, "I didn't know that, you should update your blog!" I forget who I've told what to, and because Annie is changing every day in subtle ways, I forget, "Oh, she didn't do that 2 days ago."

1. She's off of all sleep medicines, and last night she slept soundly through the night. Most nights recently have had a couple of times when she got up and looked around and then went back to sleep. I much prefer the sleeping through the WHOLE night. Please pray for her to sleep every night!
2. Today she used her left hand to eat crushed graham crackers. She really likes graham crackers.
3. She's starting to say things like "mo" for "more," and her speech therapist caught a head nod for "yes." This afternoon she seemed much more alert and communicative than even last week. Lots more vocalizations that are just a whisp away from a real word.
4. Today she stood with light pressure on just her knees for a minute or two. That means she had her shoulders, torso, and hips under control.
5. No head drop seizures since Saturday.
6. No throwing up since last Sunday a week ago I think.

The new seizure medicine makes her sleepy, irritable and sometimes nauseated. Pray that those side effects disappear, because the medicine is working otherwise.

Anyway--that's what I remember right now. You've seen action photography of flowers that open? That's what I see is happening with Annie. She's coming out of her turtle shell more and more every day.

I was thinking today that I wish God would send you all messages each time He answers your prayers. Today was very encouraging. And just a reminder to all you who have prepared meals, cleaned our house, sat with Annie, or prayed for her--we truly feel God's love through you. You are such an incredible comfort to us.


Jean


We give thanks to God always for you all, making mention of you in our prayers, remembering without ceasing your work of faith, labor of love, and patience of hope in our Lord Jesus Christ. 1 Thessalonians 1:2-3

Home again, home again jiggity jig

Happy to be home again. And happy I don't have to worry about doctors coming into the living room at dark thirty to smell my morning breath. But we do appreciate all the work each doctor and nurse and therapy friend did for Annie this whole last month, and I will miss the daily feedback and support each of them provided. We made some special friends there & we'll miss them.:(

This morning Annie's friends from Rehab Without Walls came to our house and began putting her through her paces again. No slacking here just because you're home from the hospital, y'know. She took a nap after they left, then we went out for a walk in the sunshine. I am so glad it's almost summer.

What's new? We're working on getting a tricycle like we used in the hospital. A matter for prayer. Riding that trike is something she can DO, and have FUN while DOING it. It's the little things you begin to appreciate more, right? Check out the new picture of biker Annie below. She had just come back from getting an EEG and she looked like the old guy in Back to the Future. Only thing missing is her leathers.

What to pray for? Annie has alot of strength, but not alot of coordination. Her therapists are going to work hard on weight-bearing exercises in her legs, and in her arms and torso so that she can crawl, climb stairs and walk. Pray that her cognitive awareness come back along with her motor skills. Please keep praying that she relearn talking and eating. I know I sound like a broken record.

Jean

Then He spoke a parable to them, that men always ought to pray and not lose heart, saying: “There was in a certain city a judge who did not fear God nor regard man. Now there was a widow in that city; and she came to him, saying, ‘Get justice for me from my adversary.’ And he would not for a while; but afterward he said within himself, ‘Though I do not fear God nor regard man, Yet because this widow troubles me I will avenge her, lest by her continual coming she weary me.’”
Then the Lord said, “Hear what the unjust judge said. And shall God not avenge His own elect who cry out day and night to Him, though He bears long with them? I tell you that He will avenge them speedily. Nevertheless, when the Son of Man comes, will He really find faith on the earth?” Luke 18:1-8

Rehab Diaries--Thursday, June 7th

Tomorrow we complete our four weeks of Rehab at Children's, and continue at home with Rehab Without Walls, hopefully beginning again on Monday. So what is Annie doing now that she wasn't doing a month ago?

1. Independently push herself up from a lying position, sit, and lay back down.
2. Ride a tricycle with help.
3. Yell, cry, and generally create a fuss. This is a great thing--showing emotion. She wasn't doing this a month ago. Having a flat expression is a drag. Screaming and yelling is good--at least this week it is.
4. SMILE! This afternoon she smiled a big smile for the FIRST TIME IN MONTHS!!!
5. Tolerate her teeth being brushed WITH toothpaste without blowing her groceries.
6. Taste a variety of foods--on good days. She's not yet consistent with her taste tolerance..
7. Sleep through the night without the help of medicine. She has come off of 4 different medicines in the last month.

She also hasn't had any obvious seizure activity the last three days--a huge praise. The new medicine has helped her focus and have more attention. I think it's also made her more drowsy, so please pray that the side effects go away and the good effects are permanent. She's also alot more verbal, which is so encouraging to us all--especially when her vocalizations are in response to something we say. Annie is in there--we just need to keep praying that God help her to make the words with her mouth. The whole motor planning and executing needs the Lord's healing touch.

Anyway--that's how things are going. Bill's with her tonight and then tomorrow we'll come home. It's been a good month, but a month of ups and downs--not unlike the past 5 months. Dealing with this has been the most difficult thing of our lives, and there are days when we sit in a puddle and cry. Let me tell you--I don't write in this blog when I'm blue, which probably qualifies me as being at least a hypocrite. I vacillate from missing the old Annie to bonding with the new Annie at least 5 times a day. I miss the way things used to be. But our new reality has a cute snuggle bug in it who likes to yell and scream and smile, so I'm good with it today. I just felt like I had to get that out there in case you ever thought of putting us up on a pedestal--we're crawling through this with God's help and His answers to your prayers.

Jean

"I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. I do not set aside the grace of God, for if righteousness could be gained through the law, Christ died for nothing!" Galatians 2:20-21

Rehab Diaries--Friday, June 1st

Tonight I'm home with the kids and Bill's at the hospital with Annie. We just finished week three of Rehab, and have one more week to go. Annie has made progress in her attention, motor planning, eating, strength and endurance. Let me try to fill in the blanks a little:

She is practicing waving hello & goodbye--and the little wave from her left hand has become pretty consistent. She rode her bicycle today again, and for part of the ride provided about 70% of the muscle to make it go. She loooooooves riding the trike. She continues to taste a variety of foods without "gagging, retching or vomiting," to use the phrase in her care plan. Today she had graham cracker crumbs mixed with whipped cream--her favorite. She also tried orange yogurt, cream of wheat, and pureed eggs. All without gagging, retching or vomiting. She continues to verbalize more, and more often with more people, in a "conversational" way. She certainly looks like she knows exactly what you're saying, and she's doing her best to let you know what she's saying! She can sit up from a lying position, and then lay back down without banging her head on the floor. (Abs of steel.) She is using both hands and arms for balance. Her left hand is grasping onto people, (like MY HAND), and her right hand is close to being able to grasp--but still is weaker than the left. But both hands were holding onto the tricycle's handles for a short time, so they're both improving alot.

So you can see that God has done some pretty significant work in her little body this last month. The therapists have done a great job working with her, and I think she has found a soft spot in each of their hearts. The nurses have been very caring and helpful--and wonderful sounding boards for me. I have really appreciated their input and advice in all aspects of Annie's care. And her doctors have put their heads together to figure out all the complexities of her neuro and endocrine issues--it's an ongoing puzzle that still needs alot of God's intervention--and YOUR prayers!

What to pray for Annie this week? More attention, and the ability to prioritize what is important to pay attention to. More purposeful movement of arms, legs, hands and fingers. More words, more emotion. Less--or no!--seizure activity. The right strength of Addison's meds--something we're still working on. Good, restful sleep at night for her and for all of us. More patience and love and peace for all members of the Sullivan family--especially me! And a smooth transition back home, and back into home rehab.

As always--your prayers and posts are so encouraging.

Jean

Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:14-16