Friday, March 28, 2008

Spring has Sprung!









Yea, spring!!! I've always loved fall, but this spring is going to great, just a hunch! None of us had really been sick in over 3 years, so we've been making up for lost time.We all have now fought the flu bug, the sinus bug and not a single trip to the hospital(close but not quite). Getting the windows open and seeing a little green popping up everywhere makes all the sickness just a thing of the past!


We got a new handicap accessible minivan a couple weeks ago!! I never thought I would be soooooooooooooo happy to drive a minivan. It has made our lives a little easier, no a LOT easier.I want to say thanks to Shane for working so hard to provide for our family, to my Dad and Grandfather for financially helping out so we could get the van now and not have to wait till next year. I actually don't mind going to the grocery store with both boys. It saves so much time, not to mention my back on getting Drake in and out of the van! He gets to ride in his chair and we don't have to bother with that child seat he so dearly hated! And Grant thinks having a ramp is the coolest!!! He even road his bike up the ramp like he was a dare devil! I've applied for the personalized licence plate RM4WHELZ.


It's fun getting the boys outside! We have already had a little photo op. for the new season! Hope you enjoy the pics as much as we have!!!
p.s. the Easter Bunny was good to us all, especially Grant for being the best BIG brother ever!

Let's Skip Denial & Go Straight to Intervention!





SO I guess at this point I can begin to tell the story of Gateway, or should I say The Greensboro Cerebral Palsy Infant Toddler Program( housed at Gateway). This is a place which I have passed thousands of times and you probably have too. It sits on E. Wendover @ Huffine Mill Rd. I've passed it leaving Greensboro and then again coming back from either the beach, The Burlington Outlets, my Dad's house, or Southpoint Mall (a FAVORITE shopping destination of mine). IF, I even turned my head to see it, I probably thought it was just any other school or maybe I saw a wheelchair or two and thought poor little kids. If I even gave it a thought at all.





Little did I know that there was a little piece of heaven right here in Greensboro, NC. Only one of six in the country at their level. A school for ages birth to 21 years.





So it all began after talking to Taylor. She proceeded to check in on how Drake was doing and eventually told me about Gateway. Funny, once again , how God puts people in your life to help. I've known Taylor for at least 13 years and didn't know what exactly she did for a living. Not that I didn't care, I just didn't know. She happens to be the intake coordinator for the program. She asked if Shane & I would like to take a tour. I remember saying "I'll think about it" but didn't do much of that.Why would my child need to go to such a place? He's only four months old,He's only a baby!




I guess a week later when Taylor called back I felt guilty and agreed to see this facility. In the mean while I had taken Drake for his four month check-up and had asked Dr.Dee's what she knew of "Gateway". Her thoughts were that I should NOT take Drake there since he was so little and she said,"That's where there might be lots of germs and sick kids. He doesn't need to be exposed to germs like that. "




At the time I was proud of myself for starting speech therapy with the CDSA and finding just the right case worker for Drake and getting him the attention he deserved. I also asked Carmen(my case worker) about Gateway and she said it would be a fine idea to go see the place and make my own decision. So after talking it over with Shane ,I thought out of politeness, we should go see this place.




We arrived one morning and have never been the same since. It was very surreal to tour the facility. At first all I saw was children of different ages, some with different looking faces, making funny noises and if they could even walk at all weren't always upright and looking forward. Then as we kept touring, I started seeing their smiles! I saw their capabilities at this school. I saw the gymnasium with equipment I had never seen and ow they loved climbing and running around a place where they couldn't get hurt. I saw a room full of devices to help kids walk and ride, a room made just for Physical Therapy(PT). I also saw a room for Occupational Therapy(OT), with swings and ramps and thinks that make you go, huh?? I didn't even know there was such a group of people that had to think outside the box to help these children develop and function in this so called "normal" world. They even have an Olympic sized, heated swimming pool, made just for swim therapy! Wow, and a building full of teachers and therapist that love what they do and love these children. For the first time I felt like here is a place where they understand the kids and also understood mine!!! Maybe they didn't know what was in my heart and mind, but they understood it more than any other place I had been before. Including the all the doctors I had seen and even in my on house.




Shane and I left to go for lunch. We both left the school crying in the parking lot , not because we were happy to have found such a place, but because we had stepped into a world we really didn't want to know. This was a whole new playing field. As much as we wanted to keep believing Drake would grow out of this, we knew this was where he and our family needed to be. This was a school made for Drake.




So after that we were told there was a spot available. (It's so unfortunate that there is typically a wait list for the GCP program!) We decided to go ahead and enroll Drake while we had the chance and to begin his school days at GCP. The intake process was more unique than anything I had experienced before. My mom went with me since Shane started some of his travels back again.We had a first chance to meet everyone involved in the process. Have you felt like you were being watched over by angels? Well I was able to be in the room with them all at one time. Not like in the doctors offices where everyone wants to see the child with a rare chromosome abnormality, one like no one had ever seen before, but to see a child and his abilities, NOT disabilities.




There was Taylor Swink, the one who introduced us . Marian S., PT, she checked his legs and arms and body posture. She put him on his tummy to see how he could hold his head up and his reaction to such a new position. Lydan P., OT, tried to get Drake to touch different toys or for different toys to touch him, and see how he would react to this sensory input (mostly he just cried). Jill H.,Speech(funny they don't call that SP!), she cooed and talk to my son like he was her very own. She tried to see if he would respond to sound and if he would make any sounds back. Even though I can't recall weather he did or not, she smiled and they all cheered with every little thing he did and jotted down every little thing he could & couldn't do. They saw the positives in the subtle movements that I had never noticed. I started seeing Drake for Drake and not focus so hard all he wasn't capable of. It seemed even myself,Mommy, couldn't see past what all the bad news we had received over the past few months. It was definitely the light of a new day!




Then there was Lori B., the main teacher. She took Drake in her arms and they just clicked. From the moment they met she had a way of calming him(and me). They joked for several months, since he still at this point cried several times a day, "Hand him to Lori!" . She always found ways to calm him and stopped the crying spells. For the first time I felt the open arms of this school and of a person who was put here not only for my son, but for all the children she had taught and held for the last 23 years!!!




There was a box of tissue in the room, I must have used most of it. Obviously I wasn't the first mom to come through this room and feel like this.I think I cried several times that morning, some happy tears, some sad, mostly just scared of this world I didn't understand. It was comforting to know though that this "team", I'll call them, was on our side and the future looked a little brighter. Denial now became a thing of the past.

Tuesday, March 4, 2008

JOY



Before I go on to tell about Drake, I wanted to share some advice that Dr.Roach gave me. I don't know if it was my frantic questions or just him being a good soul.


He said,"One of the greatest things in life for a person to experience is JOY. It doesn't matter weather you have an IQ of 50 or 250, you are capable.And if you experience JOY, you have had a successful life. This baby is capable of experiencing JOY because he has a loving family.We as a family will experience JOY because of this baby." I left his office that day and got in my car to write down his words. And with that said we as a family have adopted this philosophy and it's has made such a difference in our outlook. This goes to show what a GREAT doctor can do to help, even more than just the everyday medical needs.


Another Brick Wall

So back to the issue of the Neuro madness. After yet another insistence of having Dr. Harper not call me back to discuss Drake's 3rd EEG, has ordered and EKG to check his heart. The nurse called back today to set that up and didn't have another appointment set any earlier with the Dr. (which by the way the Dr. said she would get for me). Once again reminding the nurse of what Dr. Harper had promised, the nurse got me an earlier appointment to discuss Drake's fainting spells. I have in the mean while contacted Drake's first neurologist, Dr.Roach, in Ohio. He has given us a recommendation of another doctor in Raleigh and one in Chapel Hill. I'm checking into Raleigh due to the particular docs credentials. It's almost like a crap shoot trying to figure what to do sometimes. It's a good thing I was given common sense and intuition. I'm just trying to make my way sometimes though, like walking through a maze of brick walls and all the people in the maze with you speak a foreign language. I often think about what people in 3rd world countries or people with little education and with no support what so ever. Thanks again to my friends and family that help make the brick walls feel like foam blocks instead!

Flueeee!!!

Well he finally got it, yes that's right the FLU!!! Not to mention the rest of us too. This was Drake's first bout with this stuff. He was a real trooper! He got sick 7 times before we got to the doctor just in time for Dr. Young to tell us he needed to be admitted to the hospital for dehydration, but the hospitals were double bunked with patients and it was a better risk to go home and give him fluids on our own for the rest of the afternoon. He was even nice enough to give us his pager # and said he would meet us at the hospital that evening if things didn't get better. Lucky Man did get to feeling better, but remanded week and lethargic for several days. And as for us Shane and I started the following night, then his nurse, then Grant. Sorry guys! We are still home after 5 days trying not to spread it any further, I wish the rest of the county would do the same!!!