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.

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!!!

To Seize or Not to Seize, that is the Question.

Trying to keep up in this house isn't an easy task!!! Drake is having major trouble keeping his weight up. It seemed to slowly drop, but funny how Daddy saw it first this time. He 's down to 21.3 lbs. as of yesterday. He's looking quite frail and the orthopedic doc is concerned about his muscle mass around the joints.
And to top it off Drake has started having trouble with fainting spells!
I need to go back to fill in(this is once again where I wish I had been blogging all along). About 4 weeks ago, I had Drake on his changing table. He was being a very happy, good little boy (you can tell I'm not partial). I was looking down in the drawer to get a diaper when I noticed his legs go limp and fall flat. I saw his body twitching all over and his eyes rolling up. I immediately called for Shane to bring me the telephone. It only lasted a few seconds, but then they started every 30 seconds or so 5 more times. As I 'm trying to keep calm and decide who to call. Of course it was at one of those times where every one's office is closed and gone home. I didn't think we needed to call the hospice on call nurse or the doctor's after hours, I didn't really want to sit at the ER for hours just to wind up back home tired and frustrated finding nothing.
I guess I wasn't too panic stricken due to seeing grand mal seizures on my fire department days and then witnessing several variances of seizure activity in some of Drake's class mates. So who do I call? My friend and Drake's teacher Lori. I know, I know, I shouldn't have probably made her my first, but I knew she would tell me to get to the ER if she thought I was wrong in my assumptions. She has a very calming way about her and with her 20 some years experience, I knew she was my BEST option. She told me what to keep an eye on; color, breathing, timing of them and timing apart.
I did place a call to the Neurologist the next day(Friday) then again on Monday, only to have the nurse call with little concern to tell me what Lori had already said. They scheduled an EEG the following week only to find nothing.
So no more activity the rest of that evening, next day as a matter of fact, it took 3 more weeks to see yet another episode. This time was a little different, same time as before(8:00pm), but he was in his chair, upright. I was playing with his feet getting his nightly toddy ready when out he went, like a light, it happens so fast, out of no where land. It's an eerie sight to see your child pass out. He came to in about 3-5 seconds then out again 20 or so seconds later. This time I wanted action, so once again, I set put to make phone calls to everyone I could the next day with once again little urgency. I know I'm new this type activity for Drake, but give me a little grace to help figure this out!It may seem I'm saying again an awful lot, but is what has happened again and again and again.There I said it, again!!!!
Finally, the Neurologist(whom I will write about another day) has set another EEG. This time a sleep deprived EEG to try and force this same activity.Whatever!! We'll see next week and pray for Drake's original Neurologist to be wrong about the likelihood of seizures to occur at some point.

Starting All Over

I will try and start an update weekely on Drake starting today. It might take awhile to catch everyone up from the past and I'll forget these moments as well. I hope you have been enjoying the story about Drake up untill now. This will be a continual blog from here, so please check back every so often to get an update or just to see how our life is going.

A Brain Storm!!!

I think I have been putting off this particiular entry due to the memory lapse. I beleive that God lets you forget certain things so you can go on with your everyday life.


So, Shane and I had a follow-up appointment with the Nurologist,Dr.Roach, to see what the CT scan showed. (This was one of the few appointments Shane was able to go.) The doctor walked in and started small talk as always and proceeded to tell us about his findings.


It went something like this. "Drake is missing a part of his brain and his brain is not growing." That's all I heard him say as I froze in horror!!! How are you suppose to react to such news ? What questions do you ask? Was this what it feels like when your heart truley breaks?All I could say as I looked at the floor, wishing I could curl up on it and dissapear, was "STOP". I had to stop the doctor in mid sentence. I asked him to please stop talking so I could think. The doctor paused a moment and then proceeded to say he was sorry and that he thought we had heard this information before. It's one of those times I looked back wondering where exactly he thought we had gotten information before seeing him .But I guess there isn't really ever a "good" time to get such news.


The information, as it turns out, was Drake has microcephaly,colpocephaly and agenisis of the corpus callosum.I will define each:


Microcephaly is a neurological disorder in which the circumference of the head is significantly smaller than average for the person's age and sex. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. Two copies of a loss-of-function mutation in one of the microcephalin genes causes primary microcephaly.
Infants with microcephaly are born with either a normal or reduced head size. Subsequently the head fails to grow while the face continues to develop at a normal rate, producing a child with a small head and a receding forehead, and a loose, often wrinkled scalp. As the child grows older, the smallness of the skull becomes more obvious, although the entire body also is often underweight and dwarfed. Development of motor functions and speech may be delayed. Hyperactivity and mental retardation are common occurrences, although the degree of each varies. Convulsions may also occur. Motor ability varies, ranging from clumsiness in some to spastic quadriplegia in others.
Generally there is no specific treatment for microcephaly. Treatment is symptomatic and supportive.
In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.


Colpocephaly is a type of cephalic disorder. This is a disorder in which there is an abnormal enlargement of the occipital horns - the posterior or rear portion of the lateral ventricles (cavities or chambers) of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter in the posterior cerebrum. Colpocephaly is characterized by microcephaly (abnormally small head) and mental retardation. Other features may include motor abnormalities, muscle spasms, and seizures.
Although the cause is unknown, researchers believe that the disorder results from an intrauterine disturbance that occurs between the second and sixth months of pregnancy. Colpocephaly may be diagnosed late in pregnancy, although it is often misdiagnosed as hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). It may be more accurately diagnosed after birth when signs of mental retardation, microcephaly, and seizures are present.
There is no definitive treatment for colpocephaly. Anticonvulsant medications can be given to prevent seizures, and doctors try to prevent contractures (shrinkage or shortening of muscles). The prognosis for individuals with colpocephaly depends on the severity of the associated conditions and the degree of abnormal brain development. Some children benefit from special education.


Agenesis of the Corpus Callosum (ACC) (agenesis comes from the greek word "γεννεσις" meaning birth, creation precluded with "a" which gives the opposite meaning) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. Agenesis of the corpus callosum occurs when the corpus callosum, the band of tissue connecting the two hemispheres of the brain, fails to develop normally, typically in utero, resulting in disconnected brain hemispheres. The development of the fibers which would otherwise form the corpus callosum become longitudinally orientated within each hemisphere and form structures called .Signs and symptoms of Agenesis of the Corpus Callosum and other callosal disorders vary greatly among individuals. However, some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, chewing and swallowing difficulties, early speech and language delays, and social difficulties. Recent research suggests that specific social difficulties may be a result of impaired face processing.[6] Unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger's syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.

So, I asked some of the inevidable questions. Is he going to be mentaly dissabled, will he ever know that we are his parents, how long will Drake live? I'm not sure weather I really wanted to know the answers to these questions, but I felt the need to ask.Of course there were no answers to those type qustions. He did tell us that Drake might be more prone seizuers, and that his cooridination might be imparied.

Shane and I did'nt talk much on the car ride home. What do you say to the person you love and made all this happen with? After we got home and put the boys to bed, I cried myself to sleep, and the next day and the next. This is where I wish I had been blogging all along so I did'nt have to repeat the news so many times to so many people. It was funny that the same questions came from several people, will he out grow this or is'nt there a surgery to fix it? The answer was and still is NO!
I think this was where I began feeling as if I was losing Drake. My hopes and dreams for him were begining to change, it seemed more like I was'nt sure what my hopes and dreams should be for a child that might never know us as the people who love him more than any other being on the planet. I guess I felt as if I did'nt even know my own son, or even wanted to.
About that time I started talking to an old friend, Taylor Swink. We had been friends through her husband for several years. It seemed she had heard of our trials. Taylor called to see how we were doing and what was going on with Drake. She told me it was okay to take time to grieve for the child we would not have (since I truly felt as if he were dying) .Wow, what a revelation that was for me. I was finally given permision to be sad for Drake, to be sad for me, to be sad for our family, just to be sad. Thank-You!