Praise God that MEDICAID APPROVED ALL of TheraSuit therapy!!!! SO thankful!!!!!!!
Anne is still battling a stuffy nose…please pray God would give her the will and strength to persevere in therapy and also that he would heal her quickly,
Please pray that Anne would improve in strength, balance, walking and eye tracking. Anne has responded so well to this therapy in the past. We are grateful for the opportunity and provision to do this therapy for a third time!
Finally, pray for wisdom for the therapists and for Anne and me to be encouraging to the therapists and other families – that God would be glorified in our lives and witness.
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
I’m writing from the waiting room of the therapy clinic. This is a brand new clinic to us with new therapists and a long way away from home. But TheraSuit is worth the drive.
Anne has done AMAZING today. Not one tear. Not even a complaint. Nothing but determination and a GREAT attitude. Honestly, I’m shocked!
Tomorrow will be harder, but I’m encouraged by the excellent start!!
I have two pressing prayer requests:
First, we are still waiting on the last step for insurance approval. Please pray that approval would come TOMORROW! If we do not receive prior approval tomorrow, we will have to suspend therapy until we receive it.
Second: Kate is getting over a really bad cold. If Anne catches Kate’s cold, Anne would miss therapy until she recovered – which is typically 5-7 days for Anne. Please pray that Anne would stay healthy!
Typically, Anne progresses in her recovery painstakingly slowly. But lately, the changes have been super quick. Some changes are good – and some seem “bad” but my experience with Anne is that all change is symptomatic of a deeper healing of the brain. So I try to view change as progress.
Here are examples of some of her most recent changes (both “good” and “bad”).
She has a stronger will and even less patience – which means she screams (a lot)!
She will not wait for you to help her – she stands up and tries to walk wherever she wants to go- whether I’m there to help her or not.
She loves playing “pretend” and lately her pretend games have been more nuanced and complicated.
She spills her drink at every meal – on purpose.
She’s stopped telling me when she needs to go potty.
She’s more oral – chewing on her hands when she doesn’t have an appropriate “chewy tube.”
She’s walking better – with more fluidity and better balance – and even practicing more with a cane!
She consistently recognizes sight words or tries to sound out words that she doesn’t know.
Anne’s life is such a roller coaster…mainly because the brain is so complicated!
Anne begins three weeks of intense TheraSuit therapy on Monday. Her private PT thinks this is an opportune time to start this therapy because of all the changes in Anne. Something is happening in that little brain of hers and this upcoming session of intense therapy will only challenge her toward further improvement.
Stay tuned for updates and pics of Anne’s progress during the next three weeks. Thank you for your support and prayers!
With a slight increase in medication, Anne’s seizures have disappeared AND her stuttering seems to be gone completely!!! So thankful :)
Anne will have another three-week round of Intensive TheraSuit therapy beginning March 31st. Please pray that Anne would improve in , strength, balance, walking and eye tracking. Anne has responded so well to this therapy in the past. We are grateful for the opportunity and provision to do this therapy for a third time.
Finally, pray for Anne’s encouragement. She is desiring to become more independent (which is wonderful) but sometimes this desire causes her frustration as there are still so many things she cannot do without help.
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
Anne’s seizures have returned slightly this month, but her perseveration (stuttering) has improved. Please pray for both seizures and stuttering to go away.
Please pray that Anne would improve in balance and eye tracking. These two systems are actually connected in the brain! So please pray for God to continue to heal these vital parts of her brain.
Finally, pray for Anne’s encouragement. She is desiring to become more independent (which is wonderful) but sometimes this desire causes her frustration as there are still so many things she cannot do without help.
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
What a blessed year 2013 was – not because of anything wonderful or terrible – just because of God’s grace to our family.
Everyone seems to have grown so much in the last year.
Eric’s faithfulness in prayer has increased. He’s been amazed at God’s consistent work through his humble prayers.
I finished my goal of blogging through the Bible. I still can’t believe I was able to write 365 straight posts. You can read what I learned from the endeavor here.
Canon (11) just grew. Man, he’s big.
Anne (9) has shown immense improvement – both physically and mentally. Her seizures are under control, she can walk with a walker and she is able to focus for longer periods of time.
Kate (7) has grown up in every way. She’s responsible and kind-hearted. I’m so thankful for God’s work in Kate this year.
God is always faithful to work in all of us! We are most thankful for 2013 and look forward to God’s adventures for 2014!
First, praise God that Anne’s seizures have disappeared!! We removed all video applications from her iPad, and since then she has been seizure-free and all of her irritability has gone as well!! Thank you, God!
With the disappearance of her seizures, something new has emerged. Anne is perseverating whenever she speaks, which basically means she is stuttering, badly. Please pray for the perseveration to go away.
Finally, please continue to pray for the long-term goal of how to teach Anne to be an independent reader.
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
Well friends… those of you who have prayed so faithfully and those of you who have prayed once or those of you who just think of Anne occasionally… today is the today to rejoice and thank God for his amazing and wonderful gifts!!
I’m so excited. Can you tell I’m excited??!!!
Anne is now walking with a walker, independently. She can propel and steer the walker independently. She has never been able to propel any assistive walking device by herself before last week. I can’t emphasize how amazing this is… Just watch :)
(Note: Anne’s Physical Therapist is holding Anne’s gait belt which is around her waist for safety only. She is not assisting Anne. Anne is walking, balancing, propelling and steering all on her own!)
In this 2nd video, Anne’s walking improves as she walks past a group of her peers… just watch how proud she looks :)
Here’s a cool twist to this amazing answer to prayer. Three years ago, when Anne was discharged from CHOA’s Day Rehab program, I asked the PT if Anne was ready to try walking with a walker. Her truthful answer of “No,” was very discouraging at the time. Wouldn’t you know that this very same PT accepted a position within the school system last year. And on her first day of work, she walked into Anne’s class and Anne recognized her. Anne, her former patient from Day Rehab, was her first patient in the school system. And it was this same PT (who told me, “No,” to a walker three years ago) who worked to find the perfect walker for Anne. This is Lavonda, Anne’s PT, walking with her today. I am so grateful for her expertise!!
My last post was all about how I had been placing my hope in the wrong stuff… like Anne walking (for instance). Well, wouldn’t you know it – all of a sudden Anne has made a major improvement in her walking??!!! Just goes to show you that God really does love to give good gifts to his children!!
Yesterday, we gathered with Eric’s family for a casual Sunday afternoon get-together. Check out this video of her walking to Papa and Nana’s front door.
As I took this video on my phone, I thought to myself that her walking seemed especially good, but I wasn’t prepared for how Anne would surprise us throughout the day…
Papa rented a boat and we cruised around in the sunshine!
Anne & her Papa
At one point, Anne was sitting on a bench – sort of away from everybody, and decided she wanted to be closer to her Aunt Krista, so she tried to stand up and walk.
Now, Anne struggles with the skill, “sit-to-stand.” We take this skill for granted, but for Anne, it’s very difficult… so as she tried to stand over and over again, she got herself crooked on her bench. She recognized this and scooted herself back to the middle of the bench with her legs straight in front of her. I almost fell out of my seat when I saw her do this. Again, something very simple, but very difficult for Anne. And then that little girl stood up and tried to walk by herself over to where her Aunt Krista was sitting. Thank goodness her sister, Kate, was there, because Anne would have fallen!
And that was our day. Watching Anne stand up and try to walk to one family member after another – on a moving boat!! We would always grab her by the hand so she wouldn’t fall – but I’ve never seen Anne with such determination!
This is a huge step forward for Anne. We’ve been praying that Anne would desire to put forth effort. Thank you God for hearing and answering our prayers!!! She is attempting to move in ways she never has before. We have to keep an extra close eye on her now, but we’ll take it!
After waiting 20 minutes just to turn into the school’s parking area, we were forced by the flow of traffic to park a long distance away from the front door. So, as I was quickly trying to wheel Anne through the parking lot, across the side walks and into the school doors, I think we were stopped 4 times by teachers and/or staff yelling, “Hey Anne!!” to which Anne would reach out her arms and receive a warm hug. The hugs didn’t stop when we entered the building… oh no. Everyone seems to know Anne and Anne welcomes everyone with a hug.
This is the joy of having a special needs child. Anne isn’t fluent in the norms of society. She shows love unashamedly, and amazingly, she receives the same sort of un-filtered affection in return.
I had to pick up Anne early from her first day of school for a Doctor’s appointment. This was a follow-up visit after a Botox treatment. (Anne receives Botox treatments in her spastic muscles to help increase her range of motion.)
This particular doctor and nursing staff have followed Anne since her days in the hospital. So… as you can imagine, Anne is just as well-loved at this doctor’s office as she is at school. Always making jokes, Anne keeps everyone laughing. Today she said…
“Why are you talking about Botox? You wanna know about Botox??? Well, I’m a girl and I always wear Botox in my hair.”
And that is why everyone loves Anne so much! She brings us so much joy!
Quick Prayer Request: Anne’s favorite para-pro, Mrs. Bush, is not able to work with Anne because of under-staffing. Anne’s teacher is requesting an additional para-pro which hopefully will free up Mrs. Bush to work with her. That decision is under review at a meeting on August 14th. We’re praying for the best scenario to work out for Anne (and everyone else in Anne’s special needs class – including the other students and her teacher and para-pro’s).
Crayons In My Water 