Summer vacation is here! I’m excited to have Anne at home, and I’m anxious to have Anne at home :-) It reminds me of how I felt when Anne graduated from the Day Rehab program last October. I was tempted to feel anxious about bringing Anne home for good – but I had a sense that God was working on Anne’s behalf in ways I couldn’t see… yet! After one week at home, God brought both a Speech Pathologist and a Physical Therapist across our path. God continues to use those women in Anne’s life. So I’m excited to see what He has in store for this summer…
Especially, because I think Anne’s on the brink of something big. On the surface, it appears as if she’s regressed… She’s more orally fixated, more fidgety; her impulsivity seems to be off the charts. But in the past, what looked like regression was really something new awakening in Anne’s brain, and it just took her time to sort it all out. I’m hoping this is the beginning of another amazing work of God in Anne!
I also pray that I have the wisdom to balance rest and therapy. I’ve found that Anne makes large strides in her recovery after periods of rest.
So please pray for our time at home. It’s tough for me to balance all of my household responsibilities with caring for Anne at home AND spending time with all three children. It’s a bit overwhelming for me frankly… So, pray for energy and patience for all of us Jacksons this summer! Also, please pray for Anne’s continued healing… less impulsivity, improved cognitive abilities – and for her feet. Her poor feet, especially her left foot… I wrote a whole entry about Anne’s feet last fall, and her left foot is still as weak as ever. I pray earnestly for God to heal the part of her brain that controls her feet.
Thank you for staying close to our family in prayer this summer!
This has been a hard week …but a good one. Anne started to get a stuffy nose on Sunday night – which turned into a very bad cold. She’s been up alot during the night, coughing and crying because her throat hurts. Neither one of us has had much sleep. I tried to take her to school on Wednesday, but after her PT session, it was obvious that she was miserable, so she hasn’t been back. I took her to the doctor yesterday, and thankfully, she just has a cold, so we’ll wait for her body to fight it off. Meanwhile, both Kate and I have caught Anne’s cold. Fun, fun.
But, there’s always an upside to everything :-)
- I’ve enjoyed my times in the middle of the night with Anne. She is so sleepy that she is able to totally relax while I hold and rock her. That’s a special treat for both of us.
- When I took Anne to school on Wednesday, I was able to stay and observe her PT session. Even though Anne was miserable, I still got to see her walk with her cane. The PT helps Anne move her cane forward. She then directs Anne to lean down on her cane and move her left, then right foot. The PT encourages Anne to take those steps by herself. Sometimes Anne can take two steps and balance well, other times she will fall backwards (and the PT will catch her). Anne does really well when the PT holds her left hand. The improvement from the last time I saw her is amazing. She went twice as far, and she had much more fluid movements. Anne moves her legs really well; she just needs to improve her balance.
- Lastly… Today Anne said, “I need to go tee-tee.” There was something about the way she said it that made me believe her, so I carried her to the potty, and voila – she went!!!! This hasn’t happened since the accident. She will tell me when she needs to have a bowel movement, but she’s never been able to tell when she needs to go tee-tee. So as with every new skill, it will take a while before it becomes consistent, but I’m encouraged that there might be a day when Anne doesn’t need diapers! Woo-Hoo!
Now, I need to take a nap!
I’ve noticed that Anne seems to be growing up again. In other words, she’s going through some of the same developmental stages and milestones that she did before the accident. Because of this, I’ve been bracing myself for the phase she’s entering now…
During an 18-24 month period (before the accident) when Anne was 4-5, she went through a hypersensitivity phase. One example – she refused to wear socks because they bothered her toes. That was just her toes… Her entire body and emotional being was hypersensitive. She was extrememly volatile (only at home – of course :-) During those months, we both cried way too much. I often said that Anne “kept me on my knees” because I ran out of patience with her too many times. We had lots of reconciliation opportunites…
So now I get a second chance with Anne. A few nights ago, we were outside, and the wind started blowing her hair. Most people would think, “Ah, what a nice breeze.” But not Anne. She starts screaming (in public), “I want to go inside. I WANT TO GO INSIDE. MAKE THE WIND STOP MAMA!” Oh boy. What fun ;-)
But there’s lots of upside to all of this. First, she’s growing just like she did before the accident… that’s good. Also, she’s more aware of her body. I think when she gets through this phase (and she had overcome her hypersensitivity in the months preceding the accident), she will have more strength and courage to get better. And lastly, I get a chance to love her better this time around. God is in the redemption business, and I need lots of redeeming!
So please pray:
- That Anne moves through this phase relatively quickly. Selfishly, I hope she is less sensitive when we go to the beach this summer. Currently, she would have zero tolerance for the sound of the ocean or the feel of the sand or the wind in her hair.
- As Anne becomes more aware of her body, that she would have the courage to learn how to move her body in ways that promote more independence (like walking and standing and reaching, etc.)
- And finally, for me to love Anne well during this phase. I’m thankful that God has given me another opportunity to parent Anne through her hypersensitivity.
I’ll end with two bits of great news! First, Anne was able to take two steps by herself using only a cane for support. She screamed in fear the whole time, but she did it! And second, she wrote the letter “A” today with her school OT! She is doing so well!!!!
Anne is continuing to make great progress toward recovery.
Since she started school in January, her attention has increased and her impulsivity has decreased dramatically. One example…
When Anne was released from the hospital, they gave us a five-point harness car seat for Anne. They taught me how to switch the seat to a booster (using the regular seat belt) when Anne’s sitting balance improved. So last fall, I tried using the regular seat belt with Anne, but she could not stop from unbuckling herself. I decided to try again this spring, and Anne is able to keep herself from unbuckling. She even asks, “Mommy, can I unbuckle?” as we are pulling into the driveway!
Another milestone for Anne is that just in the last few weeks, she no longer uses a bed railing when she sleeps. Her awareness of where she is in her bed has improved so that she is not in danger of falling out of her bed!
Anne hasn’t stuttered in over a week AND she hasn’t seemed as tired, so maybe her body is adjusting to her seizure medication (which completely controls her seizures. We haven’t seen a seizure since she started this med.)
Lastly, Anne is beginning to read!!! I wrote about this last week, so if you missed that post, click here: Testing a theory…
Thank you for your prayers!!! -kathryn
What a difference a year makes! This time last year, people were gathering at church pleading for God to spare Anne’s life. Tonight’s celebration service was a stark contrast!
Anne climbed the stairs to the platform at the front of our sanctuary (with the help of her former PT) and said into the microphone, “I made it!” She went on to answer questions from both Pastor Paul and Pastor Pete. She stayed on topic and seemed to really enjoy being on stage in front of everyone. She asked at one point, “Wow, can they hear me all the way in the back!”
A year and a day ago, if you would have told us that Anne would be on stage – talking into a microphone – and enjoying it…. Well, we wouldn’t have believed it. This is the girl that refused to sing in children’s choir because she was too afraid to stand up in front of everybody – and who cried in Sunday School because she had to go to the bathroom, but was too shy to tell her teacher… Wow!
The church staff did an amazing job putting together this service. The music was awesome, and the words shared were extremely meaningful.
Thank you to everyone who came. We had friends and family come from hours away to celebrate Anne. The Sanctuary was full of people we love and who love Anne. It was a glorious time.
The one year anniversary of our accident is this Wednesday, April 13th.
The past year has been extremely difficult, but Eric and I agree that it has also been a year marked by profound blessings and joy!
Our church is holding a short celebration service for Anne and our family this Wednesday evening at 5:30pm in the sanctuary. The purpose of this service is to thank God for preserving Anne’s life and for her current recovery. We hope it will be an encouragement to everyone who has prayed for our family as we celebrate God’s goodness in our midst.
If you are able, we would love for you to join us on Wednesday night. Thank you all for your faithful prayers for our family!
81 Peachtree Park Dr. NE
Atlanta GA 30309
Anne continues to be so tired. She’s sleeping 12 hours at night and taking two naps during the days. It’s spring break here, so we’re just letting her rest. She goes to the neurologist tomorrow, so hopefully we can find a new seizure med for her.
She’s tired, but she’s still progressing well. Her left arm is finally “waking up.” She’s definitely more aware of her left arm. She can reach a little with that arm, and she can even feel and identify different textures with her left fingers. These are all wonderful signs that the right side of her brain is making new connections!
Anne continues to be witty and fun – even if she is tired. We’re always amazed at her cognitive abilities. Her fluency skills are so good. This will be a huge advantage to her in school and life! She still has huge obstacles to overcome – specifically in her visual motor skills, attention, fine motor skills, stamina, gross motor skills… well, I could go on, but I don’t want to get overwhelmed :-)
God loves little Anne and has an amazing plan for her. We will trust Him and wait expectantly for Him to work His mysterious ways through her!
Thank you for praying! Kathryn
Anne’s new seizure medication seems to be helping her seizures. She hasn’t had a seizure in over a week! But the medication is making her tired – like she’s in a haze. Her eyes are droopy and she wants to be in her bed all the time. The side effects could go away as Anne’s body adjusts to the medication, but if not, we’ll be looking for another seizure med. It’s just too discouraging to see her so droopy all the time…
She still stutters, but I noticed a significant drop over the weekend when she was able to get more rest. Her speech therapist thinks we should take the “wait and see” approach. Typically stuttering in children takes care of itself without any therapeutic intervention. I’m praying that’s the case for Anne!
We’re so grateful for your prayers. It’s a constant source of encouragement for our whole family!
Anne is still having seizures. She actually had a video EEG a few weeks ago. She had a seizure during that time, which was great from a diagnostic perspective. She is having mild clonic-atonic seizures which originate from her left temporal lobe and both frontal lobes. They are considered mild because she remains conscious and lucid throughout the seizure. She is on her 2nd medication. The first did nothing but make her tired – it had no affect on her seizures. Most of the time, her seizures are mild and don’t last very long – but every now and then, she’ll have an intense one that lasts too long for comfort.
On a different front, Anne has started stuttering. It gets worse as she gets tired. We’re hoping this is just one of those “one step backwards” before she takes a few steps forward :-)
So please pray:
- that we find the best medication to prevent the seizures from doing additional damage to her brain, and
- that her stuttering would disappear.
Thank you! -kathryn
Both Anne’s teacher and PT at school read this journal. Typically, after I post an entry expressing my discouragement, they will try to encourage me the next day with all the progress she is making. I’m always touched by their thoughtfulness.
Well, this past Monday, the school PT went one step further and invited me to observe Anne’s next PT session. I guess she figured that if I saw Anne’s progress with my own eyes, I might start believing it :-)
I went today, and Anne really is doing well. Her focus is better. Her trunk strength and balance have improved tremendously, and her walking has improved. I really believe that in a few years, Anne might be able to walk independently with a cane. Wouldn’t that be amazing!
Her OT is also very positive about Anne’s progress. She is making active movements with her left arm. Again, her concentration and effort are improving, as well as her stamina.
Lastly, her classroom teacher has shown me most of Anne’s classroom work from the last few months. She’s more purposeful in her coloring. In other words, it’s not pure scribble scrabble, but you can see that she is making an effort to color a specific object.
Now, if I can learn to stay encouraged based on God’s faithfulness and character instead of Anne’s progress, well then I might receive a good progress report too!
Thank you for your continued prayers.