Another Crossroad

We find ourselves at yet another crossroad. In our constant search for anything that might help our little Abby I came across a radical new form of therapy. (I should say new to me)

It's called ABR: Advanced Biomechanical Rehabilitation

Because of my few blundering attempts to describe ABR to therapists and family, I will let the inventor speak for himself. This is taken directly from Leonid Blyum's ABR website. (www.blyum.com)

"ABR is a unique biomechanically based rehabilitation approach for children and young adults with brain injury that brings predictable recovery of musculoskeletal structure and motor functions."

"ABR is the method of structural correction of musculoskeletal deformities. It is a hands-on method performed by the parents who learn the ABR technique and receive individual prescription of applications from the ABR professional staff."

"ABR in a nutshell

Everyone believes that a CP child has poor functions because his/her brain is too damaged to be able to control normal movements. Respectively CP children are considered incurable because the brain damage is irreversible.

ABR has a different philosophy. We believe that even the badly injured brain has enough electrical plasticity to allow control of normal motor functions, however, for this plasticity to become activated, a child's musculoskeletal structure has to be improved to a sufficient level - to the so-called plasticity threshold."

"While it is commonly believed that a brain injured person needs specific training of his/her motor function - trying to make "better use" of a structurally deficient musculoskeletal system - ABR shows that true biomechanical structural improvement of the musculoskeletal system automatically converts into motor function progress, eliminating any need of specific training to perform motor tasks. Motor function develops as a "spontaneous" result of structural normalization."

"Unfortunately, in traditional medicinal practice the internal organs are looked upon only from the viewpoint of chemical metabolism, while, on the other hand, the biomechanical approach does not normally focus on anything other than the classical skeleton comprised of «muscles and bones».

Strengthening of the smooth muscles induces gradual growth of internal pneumatic capacity, which in a cascade effect restores: volume, shape and strength of the neck and trunk, normal alignment of the joints of the limbs, eliminating spasticity and contractures, normal volume and then strength of weakened skeletal muscles, normal alignment of the shoulder girdle and arms as well as pelvis and legs - allowing normal "insertion" of arms and legs and thus making proper movements possible.

Moreover, restoration of muscular skeletal structure re-establishes normal metabolism (flow of blood and oxygen supply) of 'defective', atrophied muscles and, in addition, normal electrical ascending activity to the brain, opening wide the "back door" to function." (Back to post) These are just a few statements about ABR on their website. We have found this method of rehab really fascinating. It makes a lot of sense. After reading as much as I can find on ABR I am amazed to see pictures and read stories about the progress some children are making. We are considering and praying about taking Abby for an evaluation. Unfortunately for us this form of therapy is only taught in Europe, Asia and Canada. If we decide that ABR would be a great option to try with Abby, we will be taking her to Montreal Canada at the end of October 2007 for an initial evaluation with the inventor, Leonid Blyum. You can read more about him on their website: www.blyum.com We would spend one week at the center, including two hours of instruction and training each day. Mr. Blyum will prescribe specific exercises to do on Abby after her eval and than his staff will train us to do them properly. This decision to go forward with ABR will require a HUGE commitment in every way for our family. We are required to travel to Canada once a year and then three more times to a satellite center, probably Chicago or Florida for follow up assessments and adjustments to the therapy plan. All center visits will require a week of our time... this means I will probably end up taking Abby alone, leaving Patrick and my little boy behind. ABR is also very expensive. Of course we won't allow expense to keep us from doing what is best for our girl, it just makes the decision to move forward more difficult. Lastly, ABR is measured in hours performed on the child... so they ask parents to commit to 3 hours a day of therapy!! This is going to be a very big challenge for us as much of Abby's day is taken up by tube feedings, resting after the feedings, time at preschool and sleeping. We will have to develop a much more structured approach to her awake time. I guess this post has become long enough. More thoughts on ABR coming soon... once we learn more about it. Any input from families already using ABR with their kids is very welcome!!

Birthday Magic

Photo and video editing at onetruemedia.com

"Good bye heart, hello son."

We never thought we could lose our hearts again after giving them to our beautiful little girl. Somehow our hearts GREW so that we could give them away again... to our little Josiah.

One year ago today our little family grew by one precious little munchkin. I can't believe it's been a year since Josiah Lee was born. My pregnancy with him felt so long since we went 2 weeks over our due date. We never expected to even reach that day, much less go over. We celebrated each day, each week and each doctor appointment that we had. How the Lord blessed our hearts with a "fully baked" baby! Josiah's presence in our lives has been like a healing balm, soothing spots of emptiness and longing for normal things we felt we lost with Abby.

Every smile, every giggle even every cry has been so reassuring and a bit of a special surprise. We didn't know what it was like to bring a baby home just days after birth, without the apnea monitor, preemie clothes and dreaded pump! He even eats and poops without any drama. Although many may never understand why this is so precious to us, I don't think it will ever cease to amaze me how even the simplest of healthy, bodily functions is a miracle.

This past year has brought with it many moments of laughter, sleepless nights, feverish cries and silent tears as we have had the privilege of watching our son grow from a new born to a cruiser. How is time allowed to slip through my fingers like that.

It's clear that Josiah and Abby already have a special bond. One reason we were so hopeful to have another child was so that Abby could have a special friend who would always love her, protect her and be with her even after we were gone. I know that's what God has given us in Josiah. He snuggles up to her on the floor and hugs her legs. He sits next to her and plays quietly, almost like he knows she just wants him near. I really think he will be able to communicate with Abby and maybe even translate for her better than we can in the future.

He is a special little boy.

HAPPY BIRTHDAY JOSIAH!

Mommy and Daddy love you more than words can say. You are a treasure to us and we are so glad God put you into our arms. He is going to use you in mighty ways as you grow into a man.

What a precious, little, blond munchkin you are!

Enough

Are we doing enough?

A question that plagues my mind often. Especially after going to doctor or therapy appointments with Abby. Each visit reveals just how many things I haven't done to help her.

Do I stretch her legs enough, do I practice oral feeding with her enough, do I give her enough water, do I keep her busy enough at home, do I feed her slowly enough, do I give her enough calories, do I put her in the gait trainer enough, am I signing with her enough etc. The list could go on, but I think you get the idea.

Monday morning we went to seating clinic at Children's Rehab to have her kid's Kart adjusted and talk about getting a stander for Abby. We arrived at 8 am and I was prepared to hear about all the things I probably haven't done enough of. As soon as I thought this I was informed that her legs have more 'tone' (or stiffness) to them, and asked if I am stretching her throughout the day? Yes... I do, but probably not enough.

Today I woke up late after a long night with a feverish and crying baby. I rushed like a mad woman trying to get Abby dressed, changed, fed, hair brushed, afo's on then shoes and hearing aids. Before I knew it we were out the door running very behind. I knew that I probably should have let Abby's tummy rest before we hurried to the van, but I hate being late!!!

So off we went and not 30 minutes after I got home I got a call from her teacher
"Um, Abby just threw up all over the place and we are having to change her clothes... is this normal or should we be concerned?"
Well, I can't say it's really 'normal' but it does happen occasionally, especially when she doesn't get enough time to rest after feedings before she is moved.

Another 30 minutes later: "Abby just threw up two more times, I think you need to come and get her."

This all just to say that it's days like today and Monday that makes me wonder again, Am I doing enough?

I already know the answer. Of course I will never do enough. But if I trust my Lord to provide wisdom and strength at the needed times, I don't have to worry that I'm failing. God holds Abby in the palm of His mighty hand, and He ultimately provides all of her needs. He is the one with the perfect plan, not me. He did entrust her special life to us to care for and cherish, but as I start to wonder and worry about her future, He gently reminds me:

"I've got this one."

Deafblind documentary

Recently we were made aware of this website through a touching story about the world's only known, deafblind triplets. This family experiences unbelievable challenges every day with their 6 yr old girls. The Triplets were born at 25 wks gestation and suffered many of the same battles that our Abby did while in the NICU.

Retinopathy of prematurity took their vision. Time spent on the vent along with multiple antibiotic treatments stole their ability to hear. My heart literally felt as though it was crumbling as I watched their story unfold... too much of it was so familiar.

Deafblindness is such a deep, curious, seemingly untouchable disability. As a mother I often feel completely helpless as I watch Abby crying out, or yelling while kicking her legs... not knowing what she needs or wants. I can only imagine the extreme difficulty of taking care of 3 "Abby's".

In order to raise awareness about deafblindness, a documentary has been made featuring these triplets. My mom ordered a copy of the film for our family and I can't wait to see it. Every day thousands of preemies are born, and many of them are as small as our Abby was. Some of them will glide through the NICU without any lasting health problems to take home with them... others will live every day in stride, learning how to accomplish the most simple of tasks with extraordinary effort and frustration.

Because so many "micro preemies" are living past their days in Intensive Care there will be a growing number of deafblind infants and children in our life time. I am really encouraged that this issue is finally being made public so that more people will know and understand the struggle... and maybe a few of these people will feel led to become trained to help deafblind children.

This is our hope for Abby. Friends who can 'talk' to her, and play with her in her language. Mom and Dad who can see the heart of their child and reach in with comfort and love, the way she needs it.

Connection with her world without fear or reservation.

Check out this site, I think you will be blessed by it.

Pittsburgh adventure

We are back from our snowy adventure up north!

The four of us drove up to Pittsburgh PA this week to take Abby to a very important appointment. Dr. Roman is a developmentalist who specializes in children with cortical vision impairment (vision loss originating in the brain). Although Abby's blindness isn't totally cortically related, Dr. Roman has been a wealth of encouragement and knowledge for our family. We saw her for the first time 6 months ago after I attended a seminar she led about cortical vision impairment in children.

At our last visit this past September, she challenged us to push for more services for Abby, specifically a vision teacher and other people who have experience teaching blind children how to play, read, get around etc. We were able to take her list of suggestions and look over the past 6 months to describe how each was answered. Abby has a teacher for the visually impaired at school, she is beginning to receive pre-braille activities and orientation and mobility assistance. The list is more involved than most of you want to read about, so these were the highlights.

It was great to see her again, as well as her husband who is a neonatologist there at West Penn Hospital. He was so sweet to our kids last time and even took Josiah while we talked. This time he came to see us in clinic and immediately remembered us, picked up Josiah and off they went! When the pair finally reappeared an hour later we could tell Josiah had made a good friend.

Dr. Roman said she could see some progress in the way Abby responded to very, bright lights. She could tell Abby had grown and had developed better upper body strength. We think she was pleased to see all the services Abby is now getting. One of the main issues we wanted to talk to her about was recruiting an intervener for Abby; Someone who is trained in Deafblindness to connect Abby with her world. It is a very specialized job, and there aren't very many people who qualify. Dr. Roman absolutely agreed that Abby needs an intervener!! She will be including this recommendation in the formal letter she will be writing for us, in addition to another long list of suggestions and fun ideas.

Go to http://www.deafblindchildren.org/Intervenors.htm if you want to learn more about Deafblindness or Interveners.

As we left their clinic heading towards the cafeteria for lunch, we felt overwhelmed once again in the goodness of the Lord. Who would have thought 3 years ago that we would be in Pittsburgh feeling the presence of our Lord through such a special lady?

As much as we have prayed that God would heal Abby's eyes, we have had to admit again and again that only through this road could He speak to us this way... and to think about all the wonderful, special people we never would have met. The "medical professionals" who have become part of our family.

Thank you for all of your prayers while we traveled. It was a good trip... and we did get to see lots of SNOW!

-On a different yet not unrelated note-

Spring is on it's way and in the past we have participated in Walk America to help raise money for the March of Dimes' research to help save premature babies. Although preemies will always be extra special to our family, we can't ignore the babies who will never get a chance to live because of abortion in our country.

On Saturday, April 21st, we will be walking to help save all babies at risk of losing their lives. North Alabama's Walk for Life will be held at the Huntsville Middle School Track at 9 am. It will be a 2 mile trek. If anyone would like to participate we hope to see you there! If you want to, but are unable to take part, would you consider sponsoring our family? If so, all we need is an email from you with your complete mailing address including zip code and the amount you would like to donate. (patrickandpatty@truevine.net)

100% of the money goes to Choose Life support center here in Huntsville to help them reach out to women in our community by providing free pg tests, counseling, ultrasounds, life choice mentoring and discipleship, infant adoption awareness and after abortion grief support.

We know Choose Life Save a Life appreciates any support they receive. "Let there be LIFE!"

Check out their website at http://www.chooselifehuntsville.org/

Feb. Neuro checkup

February 20, 2007 at 08:46 PM CST A very long day at Children's Hospital

Abby had another CT scan today before we met with her neurosurgeon for a follow up visit. She was a trouper as usual and tolerated all the waiting and the CT scan without any problem... unlike her brother, who threw the biggest crying fit (and the loudest) we've ever experienced!

Poor Josiah, he was so tired. He let EVERYONE know how he felt! By the end of this day we were all at the end of our robe.

Despite the overall stressful experience, we did get more good news about Abby's head. The CT scan showed her ventricles are still small and things are looking good. The doctor said this is not a prediction of her future, but a good sign for today. He told us again that she could start exhibiting signs of complications at any moment, but there is no way to predict when that might be. (We are still praying that moment will never come.)

He said that as long as we have a good pediatrician that we trust closer to home we could return in 1 year! I was surprised. I think he saw how frazzled we were, and I'm sure he heard Josiah's protesting.

So, we don't plan to go back for another year!! We just hope and pray that we won't need to. Praise the Lord.

We are all glad to be home.

Clinic

Bitter cold, snow flurries and Children's Rehab Clinic.

That's what today has consisted of for me and the munchkins. Up early, not feeling so great from another cold... get everyone ready with breakfast, tube feeding, meds, diapers, juice in the diaper bag and a few tears.

Oh, don't forget the Cheerios!! And the x-ray films.

We finally get into the car about 15 min later than I had planned, in order to get to our destination by 9am... and it is snowing out. It's funny; normally I would feel giddy at seeing snow. But not today. I just wanted to get to clinic and get home.

It seems like Abby has had all of her regular appointments all clumped together lately. Last week was feeding clinic, Monday feeding therapy, neurology appt, Ortho and hearing aid clinics today. Next week we head back to Birmingham to see the neurosurgeon and get another CT scan, and hopefully hear more good news.

Despite my weariness today, clinic went ok. In the past our clinic days at CRS for orthopedic looks a little like a "waiting marathon"... after waiting 2 hours you start to wonder if the doctor actually exists. If he does exist, then does he even realize there are 30+ kids and their tired families waiting to see him! We usually get to clinic before 8 am to be first on the list, and then we wait. The last few clinics we got home around 1 or 2 pm, exhausted, frustrated, hungry and irritable. That was without Josiah!

I prayed last night for a smooth day, and made sure to bring every snack and drink I could think of for my 10 month old cruiser! The Lord heard me and showered mercy on us.

First we see Anita, Abby's audiologist. To Josiah's delight she has a basket full of toys, and carpet to crawl on. Anita wasn't thrilled with her booth hearing test today. Abby tested mostly in the 80 dec range (severe to profound), a little worse than her last test (moderate to severe)... but not inconsistent with her ABR. So we will try testing again in 3 months and hope she will be feeling better and maybe more cooperative.

Then we see the social worker who makes sure all of our info is still correct and wants to know all about school and what a big girl Abby has become since our last visit. She makes a list of all the people we want today's report to be sent to.

Then we wait. And drink some milk.

Then we see a nurse who takes us to a private room to... wait some more. Josiah chews on Abby's chair while Abby vocally complains from sitting too long in it.

Waiting...

Then we see Dr. Buckley. A nurse kindly offers to take Josiah to the desk to entertain all the other nurses. He says her x-rays (we got those on Monday before feeding clinic) look fine and her hips are growing normally. He stretches her legs and ankles, to which Abby starts yelling and biting her hands. He examines her orthotics and her night time leg splints and decides that she is close to outgrowing her orthotics... so he writes a prescription to keep on file as needed. He tells me her tightness might be a little worse but nothing he is concerned about. Eventually if she gets a lot tighter she could start taking medicine for it. Thankfully at this time we don't have to add any more meds to her daily regimen.
"See you back again in 6 months."

Back to the waiting room. Break out the Cheerios and more juice.

There we see the social worker again and make our appointments for 6 months, and to see Anita in 3.

Bundle everyone up, pack up the snacks and toys, put shoes back on and off we go, outside in the frigid weather. Once in the van, some yelling and a lot of tears... then Baby Einstein to the rescue! I don't know what it is about that crazy, tin sounding music... but it works every time.

We were home by noon!! Yippee and WHEW.

Made it through another day at CRS clinic.