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.

Snow!

Snow in Alabama... it actually happened today!

We woke up to a fresh whiteness covering our yard. It was beautiful! It's mostly melted now from rain, but we enjoyed looking at it while it lasted.

Abby is finally better from her battle with RSV and the flu... thank goodness. She's back to herself, enjoying tickles and telling us what she thinks. It's nice to hear her little voice again instead of coughing. I think she's glad to be back at school too.

She saw her neurologist yesterday who was very pleased with her seizure activity this month. She's only had 2!! Yeah! Now that she is on a full dose of her new med Lamictal, it seems to have really helped. We are so thankful. Hopefully if she remains stable for the next 6 weeks we can start weaning her off the Keppra.

Josiah is better now too. He's finally starting to sleep all night long! We tried a cool trick I learned from my wise and experienced sis: cold juice when he wakes up crying, a quick snuggle and back to bed. So far it's working! Yippee. It's definitely been a nice surprise since we've been fighting the flu this last week.

One more day till the weekend!

Post IEP

If you were to come visit us today, I'm sure you would be overwhelmed by the sounds of coughing, blowing noses and the undeniably strong presence of GERMS! Aren't you glad you are safely far away from us?!

Abby is still pretty sick with RSV but seems to be slowly pulling out of her misery. She is still coughing hard and sounds congested. Yesterday and today she has been more awake and we can see glimmers of "Abby" again. Josiah isn't feeling himself yet either. I think he got up crying about 4 times last night... so he must still be feeling badly.

Patrick and I are both under the sickness cloud now too. Bummer.

Abby's IEP was yesterday and we were both able to make it to the meeting, thanks to Carolyn who traveled down from Murfreesboro to help baby-sit! At least 14 people showed up at Madison Elementary to discuss Abby's education plan. Two special ladies from UAB's deafblind project came for support and to help facilitate our discussion about Abby's future plan. It was a good experience. We talked about in service opportunities for some of the staff to learn how to sign to a deafblind child. We requested more vision services which they granted. At the recommendation of our new friends from UAB we also requested an intervener for Abby... someone who will be a consistent presence in the classroom, connecting Abby with her surroundings through ASL communication. This is still a foreign concept for us and we need to gain a deeper understanding of what an intervener would do for Abby. Now we just have to find the right person to fill this very important position. It might not happen any time soon, but at least the request has been made.

The Lord has blessed us with a great group of people who care about Abby and her development. We are very grateful!

Thanks for praying for this important meeting. We will meet again in May to evaluate Abby's progress and address any additional needs she might have at that time.

We always enjoy hearing from you and reading all the sweet comments you send through e-mail or Abby's CarePage.

We want to know how you are doing too!

E-mail us at: patrickandpatty@truevine.net