CaringBridge Journal

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

Therapy begins

The OT and PT came today and wore her out! They both sat her up and challenged her to hold her head up. She’s doing about 30-40% of it herself! She’s also showing more emotion on her face. She grimaces in pain when the therapists move her in a way she doesn’t like. Any emotion is a good sign at this stage.

When she sat up, the PT let me sit behind her and hug her. I’ve been longing to hold my sweet girl, so I was thankful to hold her – if only for a moment.

Please pray:

  1.  They will be able to remove her drain and move her to rehab;
  2. That her tremors are just a phase that she moves through on her way to recovery – in other words – that they’ll go away completely as she heals, and
  3. For the God of all comfort to be close to Anne and to us as we are tempted to despair.

Clinging to Jesus – kathryn

No more PICU!

Today Anne was moved to a regular room! We are so thankful Anne was able to move out of the ICU. The biggest benefit here is that Canon and Kate are now able to be in the room. We had a wonderful reunion of the three musketeers today as Canon and Kate stood bedside and talked and talked to little Anne. Canon said: “Mommy, Anne looks better than I do!!” referring to the fact that Canon still has his stiched-up forehead, while Anne’s face is mostly healed.

Anne has always loved her crazy uncle Marc so much. He came by today and at the end of his visit gave Anne a kiss on her cheek – we all saw Anne smile the tiniest little right side of her mouth smile. We all cheered! And then she did it again amidst all the cheers!

Canon told Anne all about his day, and Kate had her usual one thousand questions for Anne and mommy and daddy about Anne. It was all wonderful to be back together in the chaos of a family. At the end of our time together, Canon and Kate both prayed for little Anne standing at her bedside.

-eric

Waiting…

Today was an eventful day. Anne had three goals to meet before being moved to rehab:

  1. Good breathing
  2. Good eating (via the feeding tube)
  3. Removal of EVD

As of this morning, she met the first two goals. So the plan for today was to work toward removing her EVD. The EVD is what the neurosurgeon inserted into her head to drain spinal fluid out of her brain. In the beginning, this helped reduce the pressure in her brain.

Over the last few days, the goal has been to raise the drain higher and higher so it drains less and less – and then finally to clamp the drain. After they clamp the drain, they moniter her for 24 hours, do a CT scan, and if everything looks good – they remove the drain.

Removal of the drain equals ticket to rehab :-)

So they clamped her drain this morning, but as the day progressed, I didn’t see her making the tiny steps forward like she had been doing the previous days. Her eyes didn’t impove. Her tremors increased and she just seemed more agitated. The neurosurgeon decided to unclamp the drain and wait a few more days and try again…

So we wait… AGAIN!

But, I think they plan to move her to a room on the neurology floor either tomorrow or Saturday. She doesn’t need to be in ICU anymore, so they will hold her in neurology until her drain can be removed – and THEN she can be admitted to rehab.

God’s ways are much slower than I prefer, but given the choice, I choose the creator of the universe and His plan for Anne over anything I might come up with. He is our good Father, and we will trust Him. He has preserved her life. He has a plan to prosper her, to give her a future and a hope. So we wait and trust.

Thank you for traveling this road with us. We are humbled by the outpouring of love we have been shown. Please pray for anne’s healing and for strength for all of us to persevere as we wait and trust.

Good morning

I don’t have an update on Anne. My mom stayed with her last night. I will go to the hospital shortly to relieve her. I won’t have a computer with me, so I won’t be able to update the site…

My prayer for today is that Anne will show us something new. So far, she’s made the tiniest little steps forward. She was swallowing on Tuesday. On Wednesday, I saw the slightest bit of anger in her eyes. So I hope I see a little more of Anne today.

Anne will be a candidate to move to rehab either Friday or Monday. We’re excited to begin this next phase in the journey. From what I hear, they work their patients pretty hard. Anne’s going to need a lot of encouragement from us.

We’re also hoping that Canon and Kate will be able to visit and help Anne when she is in rehab. They miss her terribly.

Thank you for your prayers and words of encouragment. They are so meaningful to us.

-kathryn

Anne still cannot move

Yesterday was quite a day. Little Anne still does not seem to be able to move any part of her body upon our request. She is still having difficulty moving her eyes, but it looks like she is really trying hard. The OT came in and moved Anne’s arms and legs. She moved her arms like a ballerina, and she moved her hands like she was coloring a picture. . . . the rush of emotion seeing her move like this was overwhelming. . . . how I so want my little girl to be able to do these two things which she so loved to do . . . .

We are hoping that Anne will be moved to rehab on Friday. It will be a wonderful move, for Canon and Kate have not been able to see Anne for 16 days since she has been in ICU. In the rehab unit, Canon and Kate will be reunited with their sister for the first time since April 13th. That will be a wonderful and tear-filled reunion.

Restful Night

Little Anne had a restful night. At times she seems to be trying to focus her eyes on me if i am in her field of vision.

i am praying she will know us and be able to speak. Most of all, i am praying that God will be close to little Anne, that she will continue her budding relationship with Him, and be able to experience his presence.

May i rejoice in Him and His joys today. i have never been able to spend such concentrated time with Anne, may i use it wisely.

-eric

Good Day

Anne had a good day today. An x-ray was done on her neck and it was determined the neck brace could be removed. Her anti-withdrawal med was reduced a bit more today and she had more periods of wakefulness. She seems to be moving her mouth a little and seems to swallow at times. Her eyes now can open wide. The rehab docs told us to move into her field of vision (since she can’t yet train her eyes on us), then let her attempt to focus. Next to move to one side to her her begin to follow us with her eyes. This will help to train her brain to use her eyes.

-eric

“Please make her good.”

Anne is stabilizing. Now that she is off the ventilator and breathing well on her own, their next goal is to increase her feeds to what she needs for her weight. If she can tolerate the increased feeds, she can then be moved to rehab – hopefully by the end of this week…

Rehab is where they will begin the slow process of retraining Anne’s brain. We pray that she learns to swallow, use her eyes, limbs and voice. There are a lot of unknowns. All the doctors will say is that with this severe of a brain injury, there will be some deficit – to what extent, they don’t know. Every child is different.

Please pray for Anne’s healing and for us and Canon and Kate to deal with the sadness of Anne not being with us at home. Also for all of us to take one day at a time as we wait for God’s plan for Anne and our family to unveil.

Last night, Canon prayed, “Lord, we’re not asking you to make Anne perfect, but please make her good.”

-kathryn