Testing a theory…

I realized during Spring Break that I might be pushing Anne too much.  Yes, her seizure medicine makes her tired, but I also think her packed schedule is a factor.  SO…  I’m keeping Anne home every Friday from both school and therapy to give her a long weekend to recover.  I’ve loved having her home this morning.

We listened to music and sang together. We even waltzed to Third Day’s, Born Again.  Anne said, “Hee Hee, this is fun!”   But since I got to spend time with her during her best time of day (right when she wakes up), I wanted to test a theory…

I believe Anne can read…  She knows all of her letters and sounds.  And she has the ability to blend sounds together.  For example, if I said to her, “Anne – what is this word…  ssss    uh   nnnnn,”   (and I put lots of space between the sounds…) she’ll answer, “sun.”  So I’ve been thinking that it might be her visual perception that’s preventing her from reading.  Anne CAN see, but sometimes she has a hard time interpreting what she sees or focusing on small details on a busy page – like letters…

So, mixing a few ideas from both her OT and SLP, I got a cookie sheet and placed three chunky magnet letters on the sheet.  Holding it vertically, so the cookie sheet was right in front of her face, I asked her to touch, and name the sound of each letter.  Then I put them in order, and Anne said, “buh…   ah…    teh  ….  bat!”  YES!!!  She went on to read: sat, mat, fat, jug, tab, bam….  well you get the idea. 

Anne's first word

Anne is so proud of herself.  As I put her down for a nap, she looked up to the butterfly painting above her bed and said, “Guess what butterfly?  I can read!”

I can read, butterfly!

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Special Day

We’ve had a great day as a family today. We took a trip to Fernbank with some other families. Anne enjoyed being with all her friends! Afterward, Anne had a great OT session and then we went to a friend’s house for a play date. Anne was able to rest a bit, and now she’s watching her favorite video, Letter Factory.

Anne enjoying Fernbank

We’re very excited about the service tonight and very thankful that our church would go to so much trouble for our family.

I’ve prayed that today would be a good day. I’ve felt surrounded by God’s presence and pleasure. We serve a great God!

Good progress…

Anne has made good progress since starting school in January.

She has her own walker that she uses with the PT at school. Anne started at the beginning of the month walking 75 ft. and has increased her distance to 150ft.

Anne has had problems keeping her legs straight when she walks. She “scissors” her legs – or crosses them over each other as she walks. Lately, her scissoring has decreased, and she is walking with a more normal gait.

Anne couldn’t count very well when she started school, but now she can easily count to 20.

Her oral fixation is improving slightly. A few weekends ago, our family was eating at a restaurant with close friends. At this restaurant, they give the kids a huge bucket of crayons and paper. I sat, waiting for Anne to pick up a fistful of crayons and drop them on the floor or throw them across the table, and then eat the rest of them! But she didn’t. She picked up one crayon, held it with the correct tripod grasp, scribbled and placed the crayon back in the bucket. She colored with lots of different crayons, always putting them back in the bucket, and only one crayon went in her mouth! We were thrilled!

She’s slowly getting better at tracing her letters with her right index finger. She can trace T, L and E easily and is starting to do well at A, N and W.

Anne is continuing to gain more self awareness. She is often angry and frustrated, especially at night. She talks about how she is angry at God for letting the car crash happen. She also gets angry at me when I have to dress her, brush her hair or help her go to the bathroom.

She has been kinder to Kate lately, showing her affection and telling her, “I love you Kate!”. She continues to play well with canon. Their imaginary worlds and games are getting more complicated as Anne makes more cognitive gains.

Her language skills continue to improve. Her sentence structure is excellent, and she corrects our grammar at every opportunity. Her memory for song lyrics is unusually astute. Today she said to me while I was singing, “No mommy. It’s ‘took’ not ‘takes.'” Seriously?!

Her private OT sessions are very challenging for Anne. They are working her left hand very hard. It takes so much effort for her to even try to move her left arm or squeeze her left hand. She usually leaves those sessions exhausted…

In the hospital, I would tell her that God was helping her to get better every day. Anne would always ask, “even today?” And I would respond, “Yes, Anne. Even today.”

I still tell her that God is helping her to get better and better every day. And she still asks, “even today?” And I say… “Yes Anne. Especially today.”

Trying to trust God with my little girl… -kathryn

Merry Christmas!

Well, Almost. . . . . . Kate(4) has enthusaistically asked me every day this week – “is tomorrow Christmas?” Little Anne, catching wind of these discussions has started asking me – “is today Christmas?” i suppose the theory being, if i keep asking maybe mom and dad will eventually give in and say that today IS Christmas :-)

Little Anne had a really good day yesterday. . . she just seemed a little more lucid and ‘with it’. After a strenuous OT session, she asked Kathryn on the drive home – “i’m tired, i worked so hard today, can we go to Wendy’s?” Her conversation just seemed a bit more normal and the tone in her voice seemed more herself. She seemed to switch topics less frequently and kept on-track.

Over breakfast, as Canon(8) and i were discussing our new family dynamics and how God still has a good plan for Anne and for us amidst the difficulty, Canon reminded me: “Daddy, its like the story of Joseph!” How so, i asked. Canon suggested that just like Joseph’s trip down the dark well of hopelessness, God made it all for blessing and for good – and for His purposes!

Kathryn and i have been a bit more anxious (and even sad) these past 2 weeks as we consider little Anne’s challenges and how she loved Christmas last year. Canon’s Jospeh account that God is writing a story that will glorify Him through the weakness of a child (Anne) is amazing wisdom. What a great thing for me to remember as we focus not on ourselves, but on the Christ-child. . . . . through the weakness of a baby, God chose to save us!

-eric

Only a week?

Has it really only been a week since we got Anne’s gait trainer?  Seriously, only a week?  Last Thursday seems like a lifetime ago – Anne has changed so much…

Anne's Rifton Pacer

She’s walking SO much better now.  She loves to walk to the piano, and then I turn her around and she walks back to the sofa.  The other night, she wanted to quit, but we encouraged her to walk as fast as she could to the sofa.  When she finished, Eric hugged her and said how proud of her he was.  Then Anne said, “I’m proud of me too.”  YES!  She put forth EFFORT!  AND had the self awareness to feel proud of herself!  We’ve been praying for that :-)

Another thing…  Anne was able to sit in my lap – without moving – just relaxing for almost five minutes.  That might not sound like a big deal – but to me, it’s HUGE.  There is something about Anne’s injury that prevents her from sitting still. While she was in the hospital, she could not relax in my lap – she would constantly want to sit up.  And she’s done the same thing at home – not being able to just sit in my lap – but always wanting to change positions.   This week, that’s changed!  I’ve so enjoyed Anne’s short bouts of stillness!  You don’t think about the gift of a relaxed child in your lap, until – well – your child can’t relax – but Anne is improving :-)

Anne’s also doing really well with her new speech therapist.   Therapists are people – with different personalities and gifts, and some have meshed well with Anne, and others – well, not so much.  This therapist is able to pull the best out of Anne.  We’re very thankful for her!

I’ve learned alot about sensory processing issues from this SLP (speech language pathologist).  Anne struggled with sensory processing before the accident, and it’s only magnified in her now.  I’m excited for Anne to start working with an OT in the area that has extensive experience with Sensory Processing Disorder.  I’ll probably write more about that later…

But for now, it’s obvious that God is working mightily in Anne!  She is emerging more and more.  Getting angry, showing excitement, demanding her way, kissing Canon, correcting Kate, and saying, “I love you Mama.”  :-) 

The joy she brings makes up for all the hard work of caring for her.  We’re very grateful in the Jackson house these days!

-kathryn

A different Anne

This evening Canon and Kate built a little train in the driveway made of a bicycle and two tricycles. They connected all three with bungie cords. Kate and Canon rode on the first two with the third empty. Canon then stated enthusiastically: “when Anne is well, she can ride with us!” Kate and Canon had so much fun with great laughter as they rode in big wide circles while the funky train weaved back and forth with only moderate control. I so wanted little Anne to be a part of the joy that kids experience in this kind of play. . . . .maybe one day God will bring Canon’s wish to our minds as we see Anne playing with her brother and sister. . . . .

Since Anne has been home all day these past couple of weeks, Anne’s deficits are more apparent. Canon has been more sad and moody. Noticing the change, Kathryn asked Canon why he was feeling down. Canon said: “Anne just seems so different. I can’t play with her like I used to, and when I try to talk to her, she starts talking about something else.” …meaning that Anne has a difficult time staying on topic.

We’re all very sad that Anne is so different. She’s not only different because of her physical and attention deficits, but her personality has shifted as well. Simply put, all the intricate connections in her brain were changed by the injury.

On the flip side, we get to watch God build Anne into what He wants her to be. He cares for her more than we can imagine. He has already called an OT, PT and Speech Therapist to work with Anne while she is home. These women individually felt God calling them to use their skills to help Anne – and stepping out in faith, God is using them to richly bless our family!!

-kathryn and eric

Erin and Stacy

Today was the first Sunday of the fall schedule at our church. All the kids moved up to new Sunday School classes; we started a new sermon series, etc. Anne moved up to the Explorers class (Kindergarteners) this morning. This is actually the first time Anne has attended Sunday School since the accident…

Our church has not shrunk back from Anne, but continues to embrace her and our family wholeheartedly. Our church is fortunate to have TWO liscened Occupational Therapists within our congregation. They have both volunteered to help Anne during Sunday School. Anne needs help to transfer from wheelchair to a regular chair. She needs help coloring and help to sit on the floor for story time. They will help her wait her turn and give her cues to listen and not talk. Even the other Sunday school teachers don’t seem bothered by the distraction Anne brings, but are genuinely excited about having Anne in the class.

God delights in Anne, and He delights in providing for her through the gifts of our church family. Erin and Stacy’s willingness to care for Anne at church is a tangible reminder to me of God’s care for us, and it encourages me to persevere and not lose hope…

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, to give you a future and a hope” Jeremiah 29:11.

Our God is good. And we wait on Him to reveal His plans for Anne. In the interim, He continues to provide for our every need. We are so grateful. -kathryn

Disappointment & Glory

The past two days have been quite a journey! God has been so tender and gracious to give me a sweet gift of encouragement at the end of yesterday (Monday) – which was one of the hardest days of my life …and then He continued to show me His goodness, as today (Tuesday) was one of the best days of my life!

Where to begin?

Yesterday was hard because of the disappointment over not removing the drain and therefore not moving to rehab. Anne’s tremors increased yesterday b/c they lowered her anti-withdrawal meds… She is having a painful time coming off of all the heavy narcotics that were in her system for weeks. My eyes were focused on what was seen – her agitation and pain – instead of the unseen…

God in his tender mercy chose to encourage me from the most unlikely source… her neurosurgeon! He is one of the best in his field, but has been very frank regarding the severity of her condition. He always chooses his words carefully so as not to give us false hope. But last night, he cautiously offered a morsel of hope as he shared a story of a former patient with injuries similar to Anne’s …She went on to be at the top of her class in college. The poor doc didn’t know how to react when I sat and wept – just out of thankfulness that God knows my heart – and knew that I needed encouragement…

Which leads me to today. It was a glorious day. The Physical Therapist (PT) let me hold Anne. Not like the other day when I just sat beside her and hugged her a little – but REALLY hold her. I sat in a rocking chair and cradled my 5-year-old girl like a baby. I sang to her, prayed for her and cried over her. I felt like all of heaven stood still and watched as I held my precious Anne.

But the blessing didn’t stop there! After I held Anne for 30 minutes, and Anne sat in her chair for an HOUR, the Occupational Therapist (OT) and Speech Therapist (ST) came to work with Anne. They sat her up on the side of the bed. She was able to hold her head up a little; she chewed and swallowed ice – but here’s the fun part – she actually listened to the OT give a command: “Anne, if you want to rest, push back against my hand.” And she leaned back with her body against the OT’s hand on her back. And then the OT sat her up again, repeated the command, and Anne did it again! We laid her down, cheered for her and she smiled the biggest smile I’ve seen from her yet!

Later I saw all 3 therapists in the hall – they were all clapping and pumping their fists (it was quite a scene…) so I walked out and asked, “so, did Anne do well today?” And they looked at me and said, “Well? She was AMAZING – she responded to a command TWICE! – That’s reason to throw a party!!”

Truly, a miraculous day. I’ve cried many grateful tears today. Thank you all again for supporting us as we walk this road. We still have a long way to go, and even though we don’t know what the end looks like – we trust that God has good planned for Anne. Amen? AMEN!

One final note: We think Anne’s drain will come out Thursday – which means hopefully Anne will be in rehab by the weekend. We will pray for just that :-)

-kathryn

Another great day…

5-2-10

Anne  made several significant steps today…

  1. The PT and OT worked together to sit her in a chair.  I think Anne really enjoyed herself :-)
  2. The Speech Therapist evaluated Anne’s swallowing and she did great. The ST put a swab with lemon juice on Anne’s tongue, and Anne swallowed in response to tasting the lemon.
  3. I didn’t see this, but Eric, the PT and Anne’s nurse ALL told me that Anne moved her fingers a little when the PT asked her to. So that’s a big step for Anne!

Tomorrow, they MIGHT remove Anne’s drain – which means, she would be a candidate for rehab. Wee-Hoo!

A few personal notes…

I (Kathryn) went to church this morning for the first time since the accident. It was so refreshing to focus outward in corporate worship. We sang the words, “worthy is the lamb.” Jesus is indeed worthy of our all.

After church, our friends the McKinney’s came to visit. This was the first time the McKinney children got to see Anne. When Canon’s best buddy, Joel, walked in her room, Canon said to Joel, “Isn’t she beautiful?” He’s the BEST BIG BROTHER EVER!

Please continue to pray…

  1. That Anne would progress and we would not grow impatient with the speed of her recovery but instead – remain grateful for every little step God helps her make.
  2. That we would persevere in prayer for Anne’s healing and also persevere in our trust in God’s good plan for Anne and our family.

Still clinging to Jesus – kathryn