Author: eric

eric
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What a journey God has us on…

We are really in the same place as Kathryn’s last journal entry yesterday. . . . able only to turn and hope in Jesus, and very much NOT able to hope in Anne’s circumstances or condition . . . . hoping and praying for God’s healing hand, but not able to see progress for today. . . . but it is only 1 day. . . . . sadness for little Anne. . . .

Little Anne is still very agitated today, crying unless she is laying in mommy’s lap. She still can’t really use her eyes as they are set to one side. Her head is even more turned to the right and her left hand is even more tightly clasped.

But in the same day, we have had tears of joy from being lifted up by our sweet friends and family that have visited or called or or emailed or given gifts for Anne – all of whom have grabbed us up and physically supported us when our legs are weak. i have been taught so much by all of you – God has been remolding my heart through watching you reach out to me. . . .

And then i remember . . . . Anne DID do a great thing today – while having her weight supported, she initiated about 30 steps with both her right and left legs! God always seems to daily give us (our daily bread) a reason to hope in Him. Anne has only been in rehab for 1 week and two days. . . . there is so much to be thankful for. . . . my despair comes much too quick!

-eric

Quick update

Anne has been so agitated today. She cried through her therapy and her nap. We have been told that heightened emotions are a phase some will go through.

HUGE praise – Anne initiated a step with her right leg!! She also cleared a swallowing test – meaning that we can attempt much more food now.

Kathryn’s prayer requests yesterday were exactly where we are. Please pray:

  1. For God to preserve Anne’s cognitive abilities and ultimately, for her to speak,
  2. For Anne to gain greater control over her eyes,
  3. For Anne’s tremors to decrease so she can have more control using her hands, and
  4. For Anne’s character to be molded into Christlikeness as she perseveres through all her therapy sessions.

Hoping for a little rest tonight :-)

-eric

Working hard…

Another tough, but wonderful day in rehab. Little Anne worked really hard to open her mouth for some popsicle – and she opened a little wider today! She also was able to push a down on a button with her right hand which was a huge thing for her. Anne sat up in her wheelchair longer today than any other previous day, and we went outside for some sunshine – the warm sun on her little body immediately calmed her – i think she really liked being outside. She also had lots of family interaction – and she seems a tiny bit more responsive with her few smiles.

George Wallace gave us John 11:4 today: But when Jesus heard it he said, “This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it.” What a great story to be reminded of – God’s timing and his plans are often very different than our own!! But they are always GOOD plans!

Praise God for the miracles he has already provided. Pray that Anne will one day soon be able to speak!!

-eric

Anne’s 1st day in Rehab

i am so proud of my little girl! She did a great job in rehab today. She can swallow, smile a little, and move 1 finger. She can’t yet really move her eyes very well, or talk, but she really tried HARD to do everything that was asked. She did open her mouth a tiny bit for some popsicle. She never complained until she was in a bit of pain at the end. 8am to 4pm – a long first day!

In my feeble mind i can’t see how she will be able to talk, or walk, or much less sing or dance, but i need not worry about tomorrow; i only need to rejoice in the MANY wonders of today.

I love my sweet little girl, and so look forward to the morning when we can do it all over again — and i will be inspired to attempt the impossible watching her pressing ON, and to love my Lord more for keeping her and holding her close.

-eric

Not a good night…

Wow, not a good night for Anne. She was very uncomfortable and agitated with lots of tremors and crys most of the night. i would get her comfortable, then 15 minutes later she would be crying out for help. i was so worried about her “going backwards”. This started last night around 11pm and lasted until around 6am. Then God put an idea in my head around 6am – Take the blood pressure cuff off of her arm – As soon as i did this – she immediately became calm!! She has now been sleeping for 3 hrs. Anne has always been so sensitive and apparently that arm cuff was REALLY bothering her.

Reading Isa 40:28-31 this AM – such rich words. An insight from the ESV about “waiting on the Lord” – means having faith in God’s promises until the time of their fulfillment – such a good definition to what God is helping us do day by day with MUCH help from all of you supporting us !

Pray

  1. that Anne’s tremors would disappear
  2. that we would be able to remove her ventricular drain tomorrow 
  3. that she would be able to move to the rehab unit this weekend

-eric

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

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

No more sedation meds!

Little Anne is sleeping quietly this morning. She is now off all sedation!! She is having some trouble breathing without the ventilator, but it may be because her throat is swollen, and due to fluid in her lungs. She seems to be having fewer tremors and is requiring less withdrawal meds.

We are so blessed by all of the prayers that are lifted up for little Anne, and all the people that have connected with us. We have great hope when we stay in the present and rely on God, but can despair when speculating on the future. May we rejoice in God’s goodness today.

-eric