Layne Swimming

Here is a new video of Layne swimming. This is the first time he has gotten to swim in a while, I have been afraid to let him since he has the NG tube! Also we caught on the video Layne "laughing" this happens rarely so I was very excited to have caught it!!

Also just to update....Layne is still only 16lbs. I am going to talk to the dietitian about this because he has been the same weight now for about a week and a half. I guess his weight gain will start to slow down.

I have been trying a bottle once a day every morning! He drinks it, but doesn't finish it. The important thing is that we keep stimulating his oral development, so that if he ever does want to eat he can. I am still doing the meal once a day also.

The Stroll for Epilepsy is this Saturday!! We are excited about that!!! We will get to use his new stroller!! Layne will be seeing the GI doctor on the 7th, I am anxious for that one to see how soon the surgery will be done. I hope soon so he can heal fast and get to swim in a big pool this summer!!!

18 Month Checkup

We went for Layne's 18 month check up yesterday with Dr. Morris. Layne weighs 16lbs now! Dr. Morris was impressed with his growth and how much stronger and different he seems! Overall it was a very good report and we don't have to go back for 3 months!!! He signed the forms for us to get our handicapped parking stuff so that's good!! Layne did get one shot and he cried:( it was so sad:(

How do you do it?

I get asked that question so often and my reply is always simply that I just have to! When you love your child as much as we do, you do whatever it takes for them!

Now don't let me fool you, it's unbelievably HARD! I started thinking yesterday that I don't even feel like a person anymore, I'm just "Layne's Mom". I don't think people truly understand this unless they are in the same situation. Let me tell you what I do all day....

Layne wakes up at about 6:30 or 7, so of course I'm up too.(Joshua is already up getting ready for work at this time.) Keep in mind that Layne does not sleep through the night, he is waking up 3 to 4 times.

We get out of bed, I undress Layne and change him and then take him downstairs. Then I unhook his pump, flush the tube and weigh him. Then I get him dressed.

From there I sit on the couch with him and watch TV, until about 8:45 when it's time to start getting his morning feed ready. After he gets fed he usually takes a nap. This is where I attempt to take a shower and get ready...I say attempt because he is usually screaming by the time I get out of the shower!

From then on it's pretty much sit on the couch and watch TV while holding Layne or get on the computer. I try throughout the day to put Layne down and straighten up the house a little and do a little therapy with him. Then when Joshua comes home and gets done with his shower I make something to eat and clean. I literally have zero time for myself(Same goes for Joshua because he works all day and comes home and holds Layne.)

Now some people may think that is fun just sitting around all day, but when you have done it for as long as I have it's not!! I get excited everyday when it's time for us to take the very short walk to the mailbox, haha!

We have truly devoted our lives to caring for Layne, and that's something that isn't easy. But I would have to say the absolute hardest part of caring for a child like Layne isn't the actual care, it's the sadness you feel that your child will never live a "normal" life. I mean I got to thinking yesterday that Layne will never get to wear underwear. It's just small things like that there are sad. It's HARD and a daily struggle. I even dream things like that Layne is talking or walking or throwing a fit! When I wake up to realize it was only a dream I am crushed.

It's also very easy to feel forgotten when you have a child like Layne. Eventually the calls to see how he is stop. But I was thinking, Layne isn't actually "sick" he is disabled and will be for his entire life, so I expect that the care and concern and people checking in will eventually fade away until it just doesn't happen anymore. To the world Layne is just another "mentally challenged kid." It's sad but true.

I am sad for Layne, but I am also so glad to have been given such a precious gift from God. A gift that some couldn't accept. A gift that has taught me more about life than anyone could have ever taught me. WE LOVE YOU LAYNE! YOU ARE A PRECIOUS ANGEL!

Cute Video!

I have discovered Layne likes paper towels. Also notice him playing with his tongue!

So Worth Reading!

Found this on another lady's blog!


Many of you I have never even met face to face, but I've searched you out every day.

I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you.You are well worn.

You are stronger than you ever wanted to be.

Your words ring experience, experience you culled with your very heart and soul.

You are compassionate beyond the expectations of this world.

You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.

A very elite sorority.

We are special.

Just like any other sorority, we were chosen to be members.

Some of us were invited to join immediately, some not for months or even years.

Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds.

We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common.

One day things were fine.

We were pregnant or we had just given birth or we were nursing our newborn or we were playing with our toddler.

Yes, one minute everything was fine.

Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.

Something wasn't quite right.

Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.

Some of our children undergo chemotherapy.

Some need respirators and ventilators.

Some are unable to talk, some are unable to walk.

Some eat through feeding tubes.

Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's.

We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable.

We have educated ourselves with whatever materials we could find.

We know "the" specialists in the field.

We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.

We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.

We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."

We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays.

We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."

We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.

We have painted a canvas of lights and a blazing Yule log with our words for our blind children.

We have pureed turkey on Thanksgiving.

We have bought white chocolate bunnies for Easter.

And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy.

We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.

And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always.

We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons.

We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.

We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.

We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins

Confessions of a Special Needs Mom

A little something from my heart...I guess it's been a little emotional recently getting the van and special needs stroller.....

Where to begin.....

A special needs mom has all the hopes for their child that every mom does, only to find out something is terribly wrong and those hopes are instantly shattered. Suddenly your hopes become that maybe one day your child can see a little or eat a full meal. Sure you can dream that they will walk and talk.

A special needs mom appreciates any type of development their child makes, other mothers take for granted that their children can run and play and talk to them, something that just comes naturally.

A special needs mom may think to herself, maybe he's really not that bad only to be surrounded by other babies and children where development just spews out of them and it may have taken months for your child to smile.

A special needs mom gets to buy her child wheel chairs, feeding pumps, and other equipment. Other moms get to buy their children tricycles and video games.

A special needs mom dreads holidays because their child has no clue they even exist. Other moms get to ask their children what they want from Santa and watch their kids go trick or treating and hunt Easter eggs.

A special needs mom cries because their child will never get married, other mothers get angry because their child is marrying a "loser". She may also cry knowing her child can never play sports or musical instruments while other moms yell at their children when they don't play good enough.

A special needs mother keeps quite when other mothers complain about their children messing up the house or playing to loud, but they really want to shake some sense into her!!

My heart aches for Layne, he can never go to regular school, play with friends, eat a happy meal, look at his mommy or daddy, get married, have children, or any part of life that is just plain normal! I am glad though that he will never know all of that, he only knows that we are his parents and we give him as much love as possible and it will be that way forever!

Never ever take your children for granted! They are beautiful gifts from God!

Layne's New Rides

Yesterday we were able to buy a 2008 Dodge Grand Caravan! We needed to do this for more room and for when Layne gets in a wheelchair(we did drive a Jeep Liberty, which is tiny!) We are so excited! It has stow and go, so all the seats go down into the floor and it gets flat! Also the side doors open with the push of a button! There are like 15 cup holders too, haha! It also has tons of little compartments to put stuff in!! I have been joking that Layne got his first car at 18 months!! Here are the pics! Also Layne has a temporary Kimba stroller, until his own comes in! I took pics of that too! Next step a new carseat!

LAYNE ATE A MEAL!

I had got to thinking that Layne had liked his meals alot better before we started adding cream(most ketogenic diet meals are mixed with butter and cream). So I suggested to Mary Susan(dietitian) that we might try that before we totally give up!

Well he finished his whole meal of chicken, green beans, and butter! It was alot smaller than the meals he used to eat, only being 33 grams when he used to get about 33 grams of green beans alone! But he ate it and that's all I care about!!! He seemed to enjoy it too! I was so proud! Oh and I did have to stand up and hold him to get him to eat! Another mother put it this way...that you have to practically tap dance on the ceiling to get these kids to eat! So true, haha!

Thought I would add this pic of him enjoying his swing!And this one of Layne with hair, haha!!

Layne's Rockin' Walkers

Help Layne meet his goal!

Hey all! There is an upcoming stroll for epilepsy that will be held at the Dallas Zoo! We have created a team for Layne called Layne's Rockin' Walkers! I would like to encourage everyone to join our team in the walk, or just to simply help Layne reach his goal of $200 by donating! All proceeds go to the Epilepsy Foundation to support further research on how to defeat epilepsy.


So let's kick Epilepsy's butt!! If you want to join Layne's Rockin' Walkers the stroll will be on Saturday April 4th! Here is the link http://strollforepilepsy09.kintera.org/faf/home/default.asp?ievent=293298. Once you get there you can click on Register here and choose join team. Layne's team is Layne's Rockin' Walkers.

If you are unable to do the stroll, and would like to donate you can follow the link at the end of this email to do so!

Because of Layne's diagnosis Joshua and I may never get to experience...

Layne looking into our eyes.

Layne saying Mommy or Daddy, or simply I love you.

Layne walking.

Taking Layne to Six Flags.

Layne messing up the house.

Layne knowing who Santa Clause is.

Layne growing up to get married and have children.

Layne going to college, or even regular school.

Layne living a long, healthy life.

Layne will always need round the clock care. He will always depend on us for his needs, he will never be indpendent.

So help us beat the fight that is Epilepsy, so that no other parent has to go through this again.

Thanks,
The Petrees

Follow This Link to visit my personal web page and help me in my efforts to support Epilepsy Foundation - Texas******************************************************************************Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser: http://strollforepilepsy09.kintera.org/faf/r.asp?t=4&i=293298&u=293298-250041457&e=2294080694******************************************************************************
Kirsten Petree

GI Appointment

We got the GI appointment scheduled for April 7th! It will be at the Children's location in Plano. We will be discussing what will happen as far as surgery, etc. I believe his doctor will be Dr. Said's husband!! I'm ready to get it done because replacing the NG tube is not fun at all! I just hate that we have to do that to poor little Layne!

Also Layne now weighs 15lbs 10.5ozs!!!!!!! YAY!!!

Doctor Visit and a Trip to the Zoo!

Today Layne had his appointment with Dr. Said(Neuro). She thinks Layne is doing very well and is happy he isn't having seizures!! We talked about getting his appointment set up with the GI doctor to get everything arranged for the G-tube. So I should know about that soon! She wants to see him again in 3 months(I think that may be the longest stretch ever!) and he will also get an EEG that day too. It will be to see if his brain waves have calmed down.

We also talked to Mary Susan(dietitian) about how he doesn't want to eat anything. She said that if we don't think he wants to eat by mouth then he doesn't have to. Every time I try to feed him a meal he just spits it out and gags and then starts crying. I guess he might just be too full since he is being fed so often.

After the appointment we went to the Dallas Zoo. Our first stop was the food court, haha, it was lunch time so we just decided to eat at the zoo. We had Layne in his stroller and hooked up to his feeding pump and because we weren't moving much he started to cry. So I was going to take him out and hold him but his feed was done so I decided to unhook that and flush it and everything first. So because he was screaming and I was trying to do all of that really fast I think everyone in there thought we were having a medical emergency! HAHA! Anyways we had lots of fun and saw lots of cool animals. I do think the Ft Worth zoo is much better though, I mean they didn't even have lions at this one!

Layne and his Daddy in front of the rhino!


Big Elephant!!

My favorite, the tiger!!!

Mommy and Layne! Layne's t-shirt we got him!

Cool Giraffe! These tortoises moved so SLOW! I didn't seem like they were real! Layne just relaxing!

Tongues are Fun!!

Layne has really started sticking out his tongue alot! It keeps him pretty entertained!! Here are some pics!!

Also Layne weighs 15lbs 5ozs!!! YAY!! We have been putting him down alot and he is getting alot better about needing to be held all the time!! I have been putting him in his swing every morning and taking a shower and getting ready. He cries sometimes but I have to be tough and let him cry.

His therapist gave us some info on Thursday about what kind of car seat we might need to get. He is outgrowing his other one. It goes up to 29 inches in length and he is 28 inches now. So she gave us some suggestions on the convertible car seats. She also showed us what kind of special needs stroller we might be getting. It is called a Kimba Spring by Otto Bock. You can look it up at www.ottobockus.com.

Sleep isn't happening much around here right now. I'm not really sure why. He has started a new med that could disrupt sleep, so I will be talking to his Neurologist on Monday about that. We see her and his Dietitian this Monday so I will update on how that goes.

I guess that's about all that's happening around here lately! Thanks for checking in! Oh yeah and still no seizures!!!! He is about a month seizure free now!!!! Praise God!!

15lbs!!!!!

Layne has officially made it to 15lbs!!!!! 15lbs 1.5ozs to be exact! I am so excited to see the scale show a higher number everyday!!!

Look at all those teeth! He currently has 2 on bottom and 2 on top! It looks like he may be getting 2 more on top soon also!

Layne has recently discovered his tongue and has been sticking it out like this alot! I just think it is so funny!!

He has also been blowing lots of spit bubbles as you can see here!

Layne will soon be receiving vision therapy, we are just waiting on it to all get set up. The vision therapists came out last Friday and they think he could benefit from therapy! They said it takes a while for CVI kids to learn how to use what vision they have and they need lots of therapy to help. It's so crazy how delicate the brain really is and how each part of the brain is SO important for basic daily activities. I am sad for Layne that his little brain is so damaged and because of that he faces so many challenges. But I am so glad that he is here with us because there was always a chance that he might not have been. We love that little guy so much!

Oh and by the way he is still seizure free!! Thank you Lord!!!!!!!!!!