Summer ABR Clinic

Well, we've made it to the first follow up session for Abby's ABR therapy! Now that we've gotten a good taste of what this involves, we are ready for more training and maybe some positive feedback on what we've accomplished so far.

Although our total ABR hours aren't even close to what was recommended, we feel that we've done our best. Since May we've logged over 128 hours of therapy. One consolation is that this is a huge jump forward in time spent on therapy with Abby, compared to before discovering ABR.
There have been some changes in Abby that are encouraging.

So off we go for another adventure. Grandma and Papa are coming along with us this time, so we should have lots of fun!!

Summer Vacation '07

Make an on-line slide show at www.OneTrueMedia.com

More Flashbacks! Our family went to Florida last month for vacation with Papa, Grandma and Aunt Connie. We stayed in a beautiful condo right on the beach. The pool was luxurious and the place the kids enjoyed the most.

Abby thoroughly loved the water. She would just lie back and let her hands float freely, looking completely calm. Several times water washed over her little face and she didn't seem upset or afraid. She even began to kick her legs as if she were excited and having fun! Because of the joy she seemed to experience in the water, we would love to have a private pool someday.

Josiah liked the water too. He learned to jump into the water and go under! Daddy made it a fun game so that he would ask to do it again, and again. It was fun to watch him waddle around the pool deck while trying to keep him from carelessly stepping off the edge into the water.

We all had fun spending quiet, relaxing time with family. Can't wait for our next summer vacation!

School Days

Abby has started back to preschool again (Tuesday). I miss her. I am able to get more done in the morning instead of doing ABR therapy like I have been doing, but it feels empty.

She has the same nice teacher that she had last school year which is great. We are still praying and looking for a deafblind intervener to work with Abby at school. After finding out there are 11 students in her classroom compared to 7 last year, our concerns about Abby's needs being met have become more immediate. We have another IEP meeting coming up in the next 3 weeks. Hopefully we will be able to address this issue, again.

We wish Abby could tell us about her first day back. Was it scary? Was it noisy with all those new kids? Where they nice? Did you sing songs? Or read books? Did you have time to rest?

We look forward to the day when she will tell us these things.

She came home tired which is a good sign, I guess. She looked like such a big girl being rolled into school.

On a side note, we have switched to a different formula this month. She has been on Pediasure with fiber but we have been noticing signs of discomfort during and after her feedings. Reflux is still a problem for Abby and probably will be for a long time, despite appropriate doses of GERD meds.

We saw her gastroenterologist the other day who suggested a few things we could try. Changing formula was the first on the list. She's already 'failing' the medication trial that usually comes second. Next was to do an endoscopy exam to see what is going on in her tummy and esophagus. He also mentioned gj feedings, where her g-tube would extend down into her intestines. It would bypass her stomach so that she wouldn't reflux any formula. The major downside of this for us is that it's moving farther away from "normal" feeding behaviors; plus she would have to have a slow drip of formula going for 12-18 hrs a day. Yuck! What a pain. We've done this before and much prefer bolus feedings. He said this option would come before doing another fundoplication, which she has also already endured (at 9 months old).

For now we will continue to give this new formula a try. Her comfort level has improved since starting it, so that is a Praise!

Like Father Like Son

I'm still not entirely sure what I think about this scenario, but I must admit it's pretty cute. Daddy recently bought and then quickly sold a very small motorcycle.

I'm told its' official name is a "minimoto," endorsed by Honda... modeled after a Honda CBR. He couldn't resist placing our little son on this contraption, probably imagining what Josiah will look like riding along side him in about 12 yrs or so.

We did have fun taking pictures of him. "Motorcycle" is one of his favorite ASL signs. He does this sign every morning when he hears our neighbor leave for work on his bike. He does it when he hears a lawn mower and when he sees his daddy working on various bikes. I've even seen him sign "motorcycle" when he has overheard us talking about bikes!! Wow.

I wonder if he will love riding as much as his daddy. If so, his mommy will have to learn to relax! Motorcycle fumes tend to run in our families, so I suppose it's in his blood.

Maybe he'd rather be a cowboy.

God Speaking

This song touched me during a particularly difficult day recently. I heard it twice that day and really tried to pay attention to the lyrics. It holds a powerful, uplifting message about God's love for us and how He sometimes chooses to show us.

Check out Ronnie Freeman's website to hear this song- http://www.ronniefreemanonline.com/


God Speaking

Have you ever heard a love song
That set your spirit free
Have you ever watched a sunrise
And felt you could not breathe
What if it’s Him, what if it’s God speaking

Have you ever cried a tear
That you could not explain
Have you ever met a stranger
Who already knew your name
What if it’s Him, what if it’s God speaking

Who knows how he’ll get a hold of us
Get our attention to prove He is enough
He’ll do and he’ll use whatever He wants to
To tell us, “I Love You”

Have you ever lost a loved one
Who you thought should still be here
Do you know what it feels like
To be tangled up in fear
What if He’s somehow involved
What if He’s speaking through it all

His ways are higher
His ways are better
And though sometimes strange
What could be stranger
Than God in a manger

Ronnie Freeman

The long seizure- June 25

These past several posts have been flashbacks... can you tell I'm really behind? It's a reflection on my real life; I'm pretty much behind on everything.
I had planned for June 25 to be a super fun day. My sister Christy, my darling nieces Anna and Norah and my Nan were coming for a 3 day visit! We were going to have so much fun playing, eating and catching up on each others lives. It's a rare occasion for us to all be together for 3 days straight at our house.

The day started out with an early morning play date in our living room. Of course all the kids woke at their usual early hour and were itching to dig into the toys. My sister and I were sleepily sitting amongst them watching when we heard all the kids calling out, "Nan, Nan... Nan's awake!" I looked up just in time to see my sweet Nan standing at the top of our stairs waving. In extremely slow motion I then proceeded to watch her loose her hand grip on the railing, skid down a few steps then fall to the floor. Everyone screamed and cried as we rushed to help Nan. It was like a nightmare playing out in real time. You can probably guess what happened in the next several hours. We called 911, they arrived and took Nan to the ER. Christy and I waited with Nan to find out what the damages were and also to get some strong pain meds! After her discharge I drove Nan as gingerly as I could manage to meet my aunt in Chattanooga, so she could recover at home.
Driving back home I was completely drained. I felt sick that Nan was hurting and that we wouldn't be able to enjoy her company. But I was encouraged to think of all those smiling faces running up to me at home. I knew my precious sis was in need of help after keeping all 4 kids alone! (Thanks Chris)

As soon as I walked in the door my poor sister was holding Abby with a very concerned look on her face. I knew something was wrong. Abby was throwing up and I could tell she had spiked a fever as I carried her into our bedroom. While cleaning up her vomit I realized she was also starting to seize. Her temp was 102.5. I watched her for a few minutes, got out the Diastat and called our pediatrician. She continued to seize even after the Diastat had been in her system for several minutes. Called the doc back again. By this time Patrick was home and we were off to the ER.They gave her several more drugs in the ER to stop the seizure. At this point it had been over an hour since she started seizing. Our poor baby looked so pitiful with her glazed eyes, O2 in her nose and IV hanging from her little arm... a scene that has become too familiar.

After much debate about wanting to take her home, the ER doc convinced us to stay the night after Abby dropped her sats several times to the low 80's as we were talking. She rested ok during the night, but poor daddy had to sleep on that hard cot/couch thing they had in the room.

At our follow up visit with her neurologist we discussed her seizure log and the recent event. He suggested considering something called Vagus Nerve Stimulation Therapy. It would involve implanting a small device in her chest with electrodes wrapped around her vagus nerve in the neck. The device would deliver 30 sec of electrical impulses every few minutes (as programmed by the doctor) so as to interrupt any seizure inducing electrical storms in the brain. We have received some materials on this treatment, and have spoken with a family who has recently implanted their child. He has now been seizure "free" for 26 days since implantation. The therapy also provides a magnet that can be used to wave across the device in the chest to deliver an extra impulse when we see a seizure coming. It is supposed to stop it. We might also be able to wean her off the some of her anti-epileptic drugs... a major plus!!

One more thing to consider for our darling Abby.

"Lord give us wisdom to make the best choice for our girl."

June 21- Sister in History

I remember the first time I read the story of Helen Keller. I was about 11 years old living in China with my family. I started the book one Saturday morning and was so engrossed in her story and so moved by her life that I skipped lunch and kept reading until I finished it.

With a tear stained face and a heavy heart I put the book down, but felt strangely connected with Helen Keller. Her tenacity and ability to learn language, not only English but several others, astounded me! Using her hands she changed the world's view of deafblind people and their role as individuals and their ability to succeed in life.

The weekend of June 21 our family had the opportunity to visit Helen Keller's home. We were there to meet with Alabama's Deafblind and Multi handicapped Association; a group we have been a part of so we can network with other families of children with these issues. After our meetings we toured the place where Helen grew up, where she learned her first word through finger spelling and bonded with her friend and teacher Annie Sullivan. The moment we stepped out of the van and got the kids settled in their strollers I knew this was going to be a special but difficult experience for my heart.

The house was very neat, full of pictures and numerous memorabilia from Helen's family. We saw the famous dinning room where she learned to fold her napkin. Outside we saw the small cottage where Annie took Helen away from her family environment so she could teach Helen alone... hoping to break through her dark world.

Once outside we saw the pump where Helen's mind made the connection between Annie's finger spelling and the meaning of language. I had to fight back tears as I wheeled Abby up to touch it. Our hearts long for Abby to grasp language as Helen did and for some such miracle to happen in our family like it did for Helen's. We lingered at the pump for some time, taking pictures and wondering what that moment must have been like for Helen.

Whenever I've heard people talk about that breakthrough moment at the water pump the focus is naturally on Helen and Annie and their experience together. As I stood there with Abby I couldn't help but wonder how Helen's mother must have felt seeing Helen sign "water" into Annie's hand, knowing that the start of something incredible had just taken place; knowing that her child's mind was opened and communication was a real possibility. I wish I could go back in time and see her face at that moment.

I think I could have stayed there all day, just sitting in the shade of those old trees and feeling connected to a dear sister in history.

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

Helen Keller