Saturday, March 31

What's new with Annie today? Well, we started back on the enteral formula "lite" yesterday. Tastes great, less filling, and--no throwing up.

Her occupational therapist, Beth, suggested yesterday that Annie spend more time on her tummy, to strengthen her back and shoulder muscles. So we had some tummy time this morning and then we practiced standing. She is gaining more coordination in her standing, and I barely have to hold her up. She seems to have grown alot in two months, too--she is so tall! That formula must have Miracle-Gro in it.

Bill & I strolled her around the neighborhood this afternoon. Getting out is good for her and for us, and as long as it's not pouring buckets of rain, we'll walk a lot.

This morning I was thinking about being content with each day, and God brought to mind the verse, "This is the day the Lord has made; we will rejoice and be glad in it." Psalm 118:24 Jesus referred to this verse (Matthew 21:42) after he entered Jerusalem on Palm Sunday, which is tomorrow, the beginning of Passion Week.

Jean

The stone which the builders rejected
Has become the chief cornerstone.
This was the LORD’s doing;
It is marvelous in our eyes.
This is the day the Lord has made;
we will rejoice and be glad in it.
Psalm 118:22-24

Thursday, March 29th

Annie was very calm today, and did well with her PT time with Debbie. Debbie said Annie is much stronger than just last week--in her neck control and in her hips. She still needs to get stronger in her upper torso/arm area. Something more to pray about. On the downside--she threw up tonight, and on Monday morning she did too. The formula we're using has more calories, is more dense, and we need to give it to her at a very slow rate. Hence, she's being fed virtually round the clock, which interferes with her PT. Anytime we speed up her feeding rate, she throws up. So--please pray that we have wisdom about continuing on this stuff or going back to the other. We are on a tight schedule of medicine, food, and rehab--and it's challenging to keep everything finely tuned.

But today was good, overall. Peter and I took Annie for a walk around the neighborhood this afternoon. It was so sunny and warm, and Annie loves to ride in her stroller. Peter's new puppy, Bailey, kept Annie entertained as we walked along.

Thanks again for your prayers for us all. We are so dependent upon them.

Jean

Monday, March 26th

Annie performed a new trick for PT Debbie today. Debbie was working with her, helping her to sit on the floor, sit on the big exercise ball, and practice kneeling on hands and knees. Then Annie took a break, and laid on her back for awhile. After a little rest, Debbie said, "Okay, Annie, now it's time to roll over." So Annie started to roll over. Hooray!! This was the first time in a long time that Annie obeyed a command, and frankly, Debbie wasn't exactly telling her to roll over, just that it was time for Debbie to help her roll over. So we were all surprised when Annie actually initiated the action.

Also today when we went out for a walk in her stroller, Annie waved to our neighbor across the street. Hooray!! Another response to a command. It's weird, but in the hospital before her surgery for the g-tube, she seemed to begin to respond to commands. Then that surgery seemed to be a big speed bump for her, and she stopped responding to any commands. Today, however, she seemed to take another big step forward. Conscious response to commands is the next best thing to her talking to me--it is so encouraging.

Praise God for answering our prayers!

Jean

Sunday night, March 25th

Olivia and I were at Barnes and Noble yesterday to get Taylor a gift certificate for his birthday, and I saw the book that Bob Woodruff and his wife wrote, "In An Instant," so I bought it. If you recall, he is the ABC news anchor who sustained a head injury when a roadside bomb went off beside his humvee. In reading about their experience with traumatic brain injury, it's somehow encouraging to note that progress with any kind of brain injury is a slow, painstaking process. The agitation, disorientation, and confusion are all part of it.

What is also encouraging to me is remembering how far Annie has come in just 2 months--the initial seizure, coma, respirator, what seemed to be paralysis and blindness, etc. Today she is breathing on her own, standing with assistance, looking around at everyone, reading her Disney "Princess" book, and humming in response to our words to her. Being the impatient person that I am, though, that isn't enough!! I want her to TALK TO ME for crying out loud!!

Okay, calm down. After we got home from church today, we took a stroll around the neighborhood, organized the pile of medical paraphernalia in her bedroom, (and hid it in her closet), and practiced standing, sitting, and brushing her teeth. Tonight we'll do some water therapy...never thought you could call getting a bath "water therapy," did you?

The verses below from the book of James come to my mind alot--the whole idea of learning patience through these kinds of situations, and of course, in every area of our lives. I don't feel like I'm doing such a hot job being patient, but I thought you might appreciate that I have goals.

Thanks again for your prayers--we are so grateful for each prayer, and we know that God is answering them.

Jean

Be patient, then, brothers, until the Lord's coming. See how the farmer waits for the land to yield its valuable crop and how patient he is for the autumn and spring rains. You too, be patient and stand firm, because the Lord's coming is near. Don't grumble against each other, brothers, or you will be judged. The Judge is standing at the door! Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy. James 5:7-11

Thursday, March 22

Cousin Kate from Texas (Rebecca's 22 year old daughter) is here visiting Annie this week. She played a slow, soft piano piece for Annie today for "music therapy," and just about put her to sleep. It was soooo relaxing. Kate has been such a help to me (like her mother who needs to move here from Oklahoma) and quite entertaining to the older Sullivan kids.

Annie got a big exercise ball from PT Debbie today. She likes laying on it and touching her toes to the floor--moving up and over and back down. Debbie helped her stand today, and sit more--Annie got a real workout. Yesterday, OT Sabiha worked with her on her sitting up and torso control--so much so that at one point Annie yelled, "Oooowwww!" Okay--that's her first word in my book! I said, "Did you hear that?" Sabiha said, "I thought YOU said that." So, Annie said her first word. I'll keep you posted on what she says next.

Goodnight,

Jean

Tuesday, March 20th

Spending 52 days at Children's Hospital helped me adjust my attitude about what happened to Annie. I looked around the cafeteria and walked through the halls and began to get a picture of how many people experience difficult and even tragic circumstances with their children. After Annie's seizure, I felt like I couldn't even breathe the first month...and then I looked around and saw: we've got THE best support network in the hospital. Annie's got the best room. The most stuffed animals. (I didn't buy any of them--you guys did!) She's got the best dad. The most courageous brothers and sister. And a Father in heaven who can part the Red Sea, make the lame walk, the blind see, the mute speak, and raise the dead.

So--we are hopeful. Annie's like a turtle peeking her head out of her shell; reaching her hands and feet out to see if it's safe to come out and greet the world. Every day she makes more progress, and that is gas in my tank. Today we practiced standing, sitting, eating, reaching for toys, and brushing her teeth. Her speech therapist, BJ, came and helped her eat chocolate pudding and a bit of yogurt--neither of which came back up. (This is how I measure success.) Her eyes have begun to track with toys, and she's been looking at everything and everyone more and more. And after her bath tonight, I saw a brief little smile as I was putting her pjs on her. Every day a little more progress.

Pray for strength in her right arm/hand, which is weaker than the left. Also, that she begin to eat and swallow food, not just let it sit in her mouth. And please keep praying for rest at night for everyone.

I know you are praying. :-)

Jean

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Sunday

Annie had a really good day today. She practiced standing 4 times, worked on her noisy cause & effect toys, read a couple of books, listened to her favorite music, and finished the day with a long walk around the block. She's weaned off of one of the sleep medicines (and still sleeps at night) and we're working on weaning off a day-time agitation med, because she is more able to console herself by sucking her fingers, or holding a toy. She also is using her left hand to grab things (like her g-tube) and put them in her mouth. And she is more comfortable sitting up. All in all more active and purposeful in her movements. The first week home has been nervewracking for us, but full of progress for her!

Please pray for her speech to come back (SOON), and to continue getting stronger in sitting, standing, and reaching for things. The PT says her job is "play" and we need to get her back doing her job.:)

Also--I bought some rice cereal at the store for her to practice eating again. Most tastes are too strong for her now that she hasn't eaten in 2 months, so I thought we'd start back at the beginning. Pray that she wants to eat and not freak out about having food in her mouth. Little things we take for granted, you know?

Thanks!

Jean

Saturday's better than Friday, better than Thursday, etc.

Every day at home with Annie has been a little better than the day before. The first couple of days (Wednesday and Thursday) were pretty hectic with a parade of Physical Therapists, Occupational Therapists, Speech Therapists, and Home Care Nurses coming to get to know Annie. I think Annie got a little overwhelmed with all the activity and her sense that Mommy and Daddy were just a wee bit nervous. Anyway, she has settled down a little and so have we.

We continue to see progress in Annie every day. Her eyes are much more alert, and she seems to look at things considerably longer than she did in the hospital. She spends much of her day either being held or on her blanket in the living room playing with Mommy, Daddy, and her brothhers and sister.

Next week, we'll be speaking with her Nutritionist, because it seems that we are feeding her all day and all night. The first couple of nights, she was not able to handle the high volume of feeds prescribed, so we've cut her night feeds in half, meaning her day feeds need to make up the difference. Long story short, we need to find a food for her that is higher in calorie content so we can cut down the volume. Please pray that we are able to work this out with the Nutritionist.

Thank you so much for your prayers during this transition. Other than a couple of rough spots on Wednesday and Thursday mornings, I really think it has gone remarkably well. Please continue to pray for a manageable routine here at home for Jean and I, but also for the kids. It's easy to place all of our focus on Annie, forgetting that all our kids have needs! Pray that we find that balance.

Thank you again, and check out the new pictures to the left!

God bless you,

Bill

There's No Place Like Home

Gee . . . all we had to do all along was click our heels three times and say, 'There's no place like home.' Did you ever wonder why Glenda didn't tell Dorothy that in the first place?

We're home! We were finally discharged at 7:00, drove home, gave Annie her 8:00 meds just in time for her 9:00 meds, now we've got ten minutes before she gets her 10:00 meds. Then, we get to sleep. This update's gonna be rather short, but I did want to let you all know that we all got home safely, Annie seems no worse for wear from the trip home, and we're all looking forward to a good night sleep in our own home.

Our next update will be this weekend on this blog. As this chapter closes, we'll also close the Caringbridge site. We've saved all of your notes on that site, as well as all the journal entries. We'll be including them all in Annie's scrapbook.

Thank you, thank you, thank you. I don't know what else to say. Thank you for all your prayers.

God bless,

Bill.

Homecoming Tomorrow?

Tomorrow's the big day! . . . Maybe.

Annie did really well last night, sleeping all night from 9:00 to 6:30. Unfortunately, when she got her 7:00 medicines she threw them up, along with most of the food she had been getting in her tummy all night. She then threw up again at 9:00 and around 11:30. She's been ok since, and she is back on her feeds. However, if she is still throwing up tomorrow, they won't let us go home. Please pray that Annie does well with her feeds tonight, and that she is able to hold her food and her medicine down more consistently than she's done so far.

Around noon today, Annie had a video swallow test where her speech therapist Tiffany gave her barrium laced pudding then they x-rayed how she swallowed. They the tested how she did with liquids. Annie passed both tests! This means that as she tolerates it, we can work with her on puree's and liquids to help her to re-learn eating. No solid foods, but this is a start! I promise not to steal any of Annie's chocolate pudding.

So a big day tomorrow. Her bed is getting delivered before noon, and Jean and I still need to be trained on a couple of things. If all goes well, we should all be home tomorrow evening.

I have created a blog to continue to journal Annie's progress. Once we get home, we'll update that on a weekly basis, with lots of pictures! I created it on Google's blog program Blogspot, so you will be able to register to be notified every time the journal is updated (similar to Caring Bridge) and will also be able to write notes as you've been doing on this site. The address of her blog is www.annaleesullivan.blogspot.com. If you go there now, it looks pretty plain, but I'll have it all pretty'd up by this weekend!

We'll update again tomorrow on this site to let you know how/if homecoming goes.

Tomorrow will be Annie's 52nd day in the hospital. You have all stood by us in prayer and good deeds. We are eternally grateful.

God bless you,

Bill.

'He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.'

- Isaiah 40:29--31

March 11, 2007

Annie continues to improve every day! She is adjusting well to her bolus feedings, she loves to take rides in her stroller, and is looking forward (as are all the Sullivans) to her homecomning this week.

As the homecomming approaches, Jean and I continue to realize all of the things that need to happen. Please pray that we get the important things done, and let the unimportant things go. We also ask that you pray for our whole family as we transition back home. We know having Annie with her special needs at home will be both joyous and difficult for each person. Pray for our unity, peace, rest, and good humor through this transition.

God bless you,