TheraSuit therapy 2014: Day 1

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!

Thank you!

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Pray for Anne…

March 2014’s prayer requests:

Please pray for Anne…

  1. With a slight increase in medication, Anne’s seizures have disappeared AND her stuttering seems to be gone completely!!! So thankful :)
  2. 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.
  3. 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!

Pray for Anne…

February 2014’s prayer requests:

Please pray for Anne…

  1. Anne’s seizures have returned slightly this month, but her perseveration (stuttering) has improved. Please pray for both seizures and stuttering to go away.
  2. 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.
  3. 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!

Pray for Anne…

December 2013’s prayer requests:

Please pray for Anne…

  1. 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!
  2. 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.
  3. 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!

God’s Amazing Answer to Prayer!!!

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!!

Pray for Anne…

November 2013’s prayer requests:

Please pray for Anne…

  1. Anne has made noticeable improvement in her reading and walking! Thank you for your prayers, and please continue to pray for these long-term goals.
  2. Anne has been extra irritable at home. We are not sure if she is having mild seizures or if she is just going through an “irritability phase.” Please pray for wisdom and insight to help us determine the cause and a solution.
  3. And finally, praise God that Anne is receiving good reports at school, both academically and behaviorally. She has come so far!

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

Pray for Anne…

October 2013’s prayer requests:

Please pray for Anne…

  1. To overcome her cortical visual impairment to learn how to read,
  2. Still waiting for a decision for more support for Anne’s special ed. classroom…
  3. And finally, praise God for Anne’s new determination and desire to move and walk.

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

Pray for Anne…

September 2013’s prayer requests:

Please pray for Anne…

  1. For much-needed extra support in Anne’s special education classroom,
  2. For Anne to overcome her cortical visual impairment to learn how to read, and for Anne to be able to walk independently one day,
  3. And finally, for Anne and Kate to be kind to one another. They both need to have more patience with the other ;)

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

Anne’s first day of 2nd grade

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).

Pray for Anne…

August 2013’s prayer requests:

Please pray for Anne…

  1. For wisdom and patience for Anne’s teachers and paraprofessionals to help her reach her maximum potential.
  2. For Anne’s transition into 2nd grade – that her classmates would be accepting and kind.
  3. For Anne to overcome her cortical visual impairment to learn how to read!
  4. Praise God that our insurance approved the additional therapy visits to cover TheraSuit Therapy!!!
  5. Praise God that Anne’s seizures seem to be controlled with her current medication with no harsh side effects!

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!