Progress report

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

Smart Girl!

We have a little game of riddles that we play as a family. I read the following riddle and ANNE guessed the answer before Canon or Kate had any idea. See the bottom of the post for the answer: “After a shower you may see someone who is wet holding me. Like wind in your hair you feel me, but much more controlled you will be.”

Canon and Kate were trying to remember the verse 2 Peter 1:21. While they were struggling, Anne spoke up and said it perfectly! We all just looked at each other and all hugged Anne!!

We have noticed that little Anne seems to have all of her smarts and intellectual ability, but her capacity for appropriate responses can at times be hidden behind her inattention and impulsivity.

Our little Anne now has the distinguished crown as the LOUDEST person in our family! It is really quite amazing considering that for so long Anne was so flat, monotone, and quiet. Now, she is so the opposite. So much joy and emotion. She really loves to yell and scream for joy with laughter and smile. She really gets excited when we play music!

We are praying for:

  1. Anne’s oral fixation, impulsivity, and inattention to decrease
  2. Standing and walking
  3. Anne’s heart to be filled with God

answer: hair dryer

eric

Good Scans & Good Plans

CAT Scan today – the doc said Anne is fine – doesn’t want to see her again in 6 months!! Praise God. The fluid on her brain seems stable, no extra pressure.

i continue to be humbled and amazed at the wonderful outpouring of love for little Anne and our family. So many of you reach out to us even though you have your own difficulties to endure. This continues to impact me and change me.

The current rehab program is not seeing Anne make enough progress to want to extend her – they suugest she just needs time, and a different type of therapy where she can have more dedicated one-on-one sessions. We feel a real peace about this; that little Anne needs a change.

In so many ways Little Anne’s progress has slowed. She continues her oral fixation, and regressed in her eating, and doesn’t seem to be improving in her focus/attention. This is new ground for us. We have given some lip service to the possibility that Anne’s journey may plateau, but had not faced it until now. We cling to God’s promises and seek to stay in present rejoicing in His goodness.

. . . . . then He let’s us see glimers of great hope and reminds us that we are on His timetable, not ours . . . . Anne’s emotions have really begun to change – higher highs and lower lows, gone are the distant, flat expressions – given way to squeals of delight or sobs of sadness or passionate yells at her sister. Sweet Anne also stood (with braces) at the bedside with only her right hand helping to balance her for almost 10 seconds!!

So maybe the changes are still occuring, on the inside, maybe a foundation of neurons are being laid for upcoming new growth. Regardless of whether there is advancement or retreat in little Anne, i was reminded this week of Ecc 12:13 – i may not know or understand His ways, but He is good and He asks me to revere Him in all i do.

keep praying!

-eric

5 month update…

It’s been five months since the accident. Anne has made rapid improvement in so many areas – and we are now beginning to see what areas of her brain are the most affected by her injury.

Anne struggles most with attention. This affects everything she does, thinks and says. It’s difficult for her to hold a thought for very long and for her to focus on a task without getting distracted. Her lack of attention has a negative impact on all areas of her rehab – she can’t focus to walk, or put a puzzle together, or wait her turn. She actually has so many strengths. Her memory is in tact; she has excellent reasoning skills; she remembers how to read simple words, but her lack of attention prevents her from doing what she knows how to do – or from learning how to do new tasks.

Another area in which Anne struggles is impulsivity. Lack of attention and impulsivity go hand in hand. Whatever Anne thinks, she does. She doesn’t have the focus to inhibit her impulses.

Actually, her impulsivity has improved dramatically over the last few months, but it’s still an issue for Anne. Thankfully, Anne doesn’t think too much about inappropriate things. She cares about people, and that is demonstrated in her impulsivity. Let me give you an example:

Last night we were at the ballfield waiting for Canon to finish practice. She asked everyone who walked by, “What’s your name?” If someone stopped to answer, she would engage them in conversation and then as the person started to walk away, Anne would say, “Will you give me a hug?” Anne got lots of hugs last night :-)

These are impulsive behaviours from a very sweet six year old. We are so thankful for Anne’s innocent spirit and her ability to endear herself to others!

Please pray that:

  1. Anne’s attention would increase so that she could work hard to get better,
  2. Anne’s impulsivity would decrease so that she could communicate more effectively to her peers and others, and
  3. For Anne to KNOW God’s love and care for her.

These boots are made for walking

Anne is FINALLY starting to make a little progress with her walking.

On her first day of rehab (May 7th) – she had no head support, and the only part of her body she could move on command was her right index finger. She made great strides in the next few weeks (especially cognitively), so that when she left the hospital, she could sit, track with her eyes, eat and talk – but her walking never really improved…

Just in the last few days I’ve seen the first improvement in her walking. Her feet are more relaxed. She’s stepping great with her right, and even moving her left leg a little. I don’t have to assist her as much with weight-shifting… and her balance seems to be improving. I’ve been helping her climb the stairs. She’s got great strength in her right quadricep. We’re even working on descending the stairs. This is harder for Anne because when she initiates the step down with her right leg, she must bend her left knee, but she can do a few steps :-) All of this is very encouraging!!

We’re still praying constantly for sweet Anne. She’s made so much progress, but we’re humbly hoping for more. We’re trying to remain open handed with Anne. Every day, I go through the same emotional pattern… Grief, followed by surrender, followed by hope.

Please pray for Anne:

  1. That her walking will continue to improve
  2. That her focus and attention will improve so that she can particpate in group activities\
  3. That God will give her a clear and crisp mind, and
  4. That she would be aware of God’s presence and care for her.

Thank you! -kathryn

Positive signs of improvement…

Her injury is primarily on the right side of her brain. According to her MRI, the damage to her right hemisphere is extensive. Anne has shown typical deficits associated with Right Hemisphere Damage (RHD). Here are a few:

  • Flat effect – no expression and monotone speech.
  • Verbose since the left side of the brain controls verbal skills, RHD patients tend to talk alot :-)
  • Limited Focus and Attention
  • Limited Self Awareness – RHD patients fail to recognize the sympoms of their brain injury. For example, an adult with RHD doesn’t understand why he can’t go to work or drive a car.

Anne has shown improvement in alot of these areas. She has some expression when she talks, and even though she can’t carry a tune (yet), she’s constantly singing! On the flip side, Anne talks quite a bit, which is a blessing at home. She still struggles with an extremely short attention span and she is easily distracted.

Most encouraging is that she has shown glimmers of self-awareness – which is a HUGE positive sign that she is continuing to heal. She’s made brief comments that she is mad about the car crash and sad that God doesn’t love her. When I try to ask her questions about what she’s feeling, she typically gets distracted and starts talking about something else…

I feel like Anne is only able to express a fraction of what’s going on inside her. She’s impaired by her impulsivity and attention deficit.

Please pray:

  1. That Anne’s attention would increase so that she could participate in age appropriate tasks and activities
  2. As Anne’s attention increases that she would be more self aware and that we would have the wisdom to walk that difficult road with Anne,
  3. And finally, that Anne would come to a place that she can say with full awareness that God is Good – and can sing (in tune) His praises :-)

That’s my hope for Anne – that she would know God more deeply as a result of her journey.

Thank you! -kathryn

Wow,

…Anne is home. Anne has really done so well adjusting to home – even with the juxtaposition of having many new experiences for Anne mixed into the familiarity of home:

  • she has learned to sit on her own for 5 minutes or so before falling over.
  • Anne has continued to eat really well, although she still makes an enormous mess :-)
  • she is sleeping better here than at the hospital
  • she seems happy and is only fussy when hungry or constipated
  • we took her to the pool and she enjoyed a short water therapy session

Canon and Kate have been really sweet and are always wanting to assist Anne. Anne pokes their eyes, pulls their hair, and squeezes their noses, but Canon and Kate just love on her. Tonight Kate said to Anne right after Anne pulled Kate’s hair – “I love you, Anne”. Somehow at 4 years old, Kate understands where Anne is in her recovery and is willing to be on the journey with Anne – only God could make that happen.

Pray for Kathryn – it has been hard: While at the hospital, the comparison was the miracle of Anne moving from the stillness and silence of the PICU to Anne’s speech and movement while at inpatient rehab . . . . but at home, we are much more reminded of (and mentally compare her to) Anne’s little person prior to the accident. So we continue to have joy through some tears when remembering the past . . . . but we know God calls us to be in the present with Him . . . . and Anne.

The day rehab program starts on Monday, so our journey continues. . .

Pray that Anne will continue to heal! We have three goals for our stint at day rehab – Reading, Writing, and Walking. Please pray that God heals Anne in these ways.

-eric

1st fruits…

Well, Anne has officially completed her first week of rehab. Her estimated stay is 4-6 weeks…

Yesterday, I got to visit with a mom whose daughter had a worse brain injury than Anne’s – and now she’s toddling all over the rehab floor – as normal as can be.

She encouraged me to hold on to the small things that Anne does because they reveal her potential. So let’s list the ‘small’ steps that Anne has accomplished this week :-)

  1. She says, ‘yeah,’ ‘uh-uh,’ and ‘more’ consistently. And then today, my mouth about hit the floor when her therapist asked her to say, “marshmellow.” AND SHE DID! amazing
  2. She is eating pureed food well and is starting on crunchy foods.
  3. She is sitting well with assistance and can sit a little while totally unassisted.
  4. She’s standing with assistance for 15-20 minutes at a time.
  5. She’s consistently initiating steps with her right leg, and has initiated with her left leg a few times.
  6. She’s grabbing and ‘exploring’ with her right hand.
  7.  She smiles, laughs and cries (alot :-)

I would say this has been a pretty good week!!! These are the “first-fruits” of God’s work in Anne. I’m encouraged to press forward – while remaining grateful for God’s mighty work in the present.

You are our GOOD God. THANK YOU JESUS for preserving Anne’s life and bringing her this far. We pray for her total healing, but trust that you will finish the good work you’ve started in Anne. We know your plan for Anne is good. We are humbled by your mercy toward us. Please help us to trust you moment by moment. We love you! Amen