Merry Christmas to All!!!

How do I catch up on 3 months gone by? I guess I don't! It seems after we sit here in the hospital waiting for Santa to arrive, the past 3 months are gone by and still here we are. Drake has been sick and not had a full meal in a week. He finally got too dehydrated yesterday and here we are for the BIG day tomorrow. They started IV fluids and he is responding well!!! Mommy had to go home last night to finish wrapping and make sure all was ready for Santa to come. Grant (big brother-6) was assured that Santa will make it to the hospital, so we're having a pajama party tonight in our Christmas pj's and will await the arrival of Jolly Old St. Nick.

After sitting here for the last couple hours, I thought it would be a good time to catch up on the blog! So here is the QUICK version;Summer was pretty uneventful! The Drake Naylor Invitational was a BIG success, $62,000!!!!!!! (More to come later with a video) Actually very few doctor appointments, but also little help with his "episodes".
After starting back to school, Drake ended up in the hospital due to an accident at school. His feeding tube was pulled out and had to stay at Brenner's for 4 days. I was told it was going to happen one day, I'm just glad it wasn't me! Unfortunately we couldn't get the tube re-inserted in time (only 20 minutes time lapse) and it lead to a the unfortunate event of the hospital trip.
He now loves school and his new teachers (Ann, Betty & Donna). I was so worried when we had to move into "pre-school" and that it would take forever to "break in" a new teacher and therapists!!! But once again, Gateway Education Ctr. has come through and we couldn't be happier!!! Drake's new teacher not only has over 20 years experience, she also use to work at the school for the deaf AND has a special needs child of her own!!! Ann and all the therapists work well together and I love their since of communication with each other and with us! I for see a long and loving relationship building as I write!!!
Later while seizures continued to get worse, we came back to Baptist Hospital for the EMU (epilepsy monitoring unit). He performed well and had several seizures while being "hooked-up"! We started on one medicine which didn't work (shocker!!!) We have since stared another and still battling the communication issues with our neurologist when things don't seem to be going well.(our on going battle)
We lost one of our GREAT nurses for Drake in September. S- had to go back to school, she's trying for her P.A. degree and we wish her the BEST!!! We have since started a new girl P- who is leaving at the end of December to go to Forsyth Tech to finish her nursing degree. We will miss her dearly, but will keep touch!!! It seems the 3 greats( Princess, Shafaq, & Pierina) we have had, all have an enormous since of ambition. We always want you girls to stay, but know you are here for bigger reasons than just to help our son. Thanks for all you girls do and we don't want any of you to lose your special talents!!! You each deserve the best!
I truly am disappointed in myself for not keeping up with this blog! I always have so much going on every week that I want to share. As I sit here, in the hospital on Christmas Eve, it all seems irrelevant. I have lost more sleep about Drake's seizures and the frustration with the neurologist. I have worried my self to death about Grant's feelings of being left out and his BIG adventures of beginning Kindergarten! He's the best big brother and I can tell God has big plans for his future!
Tomorrow Santa will come, then Santa will be gone, but we still have our family! What a lucky life I have; to share with each other and with you! Thanks for evryone's support this year and I'll try to keep you posted better, again :)
MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!!!

Project Playground Complete!!!

Well, not to change the subject, but the playground at the GCP Infant Toddler Program housed at Gateway has been completed!!! (Please see video from previous post “Drake’s Story Video” to see where the funding came from) It took almost a year of planning this project, which I knew little to nothing about. After all the regular hiccups of building anything and lots of help from Jimmy Hicks Construction,James at Guilford County and Grounds for Play, the project turned out great. I have to give props to Jimmy for all the extra hours, equipment, and phone calls from me of constant worry and yes, nagging he had to endure. (“Bless his heart!”)

What a great time!!!

3rd Annual Drake Shoot

We had such a great time at the 3rd annual DNI, we hope you did too!!!

Second Opinion Time

At this point I felt the need for a second opinion and quick! Dr Y. was able to et me in with a Nurologist in GSO. I took the first thing available. Lucky for me I was warned of his personality and was prepared with Drake’s past medical history, current medications & dosages (Thanks Nan!), even a copy of his MRI on CD.
Even though my frustration with Dr.Hi was communication and trying to be seen, Dr.Hi had the same basic things to say as Dr.H. I was impressed by his promptness, but all and all I didn’t want to change due to the fact that Drake has practically 13 doctors at BCH and they do have the capability to communicate (even if it takes a little fire under their seats every now and then) when they need to.
What it boiled down to is if Drake started having these episodes more frequently, we would need to go back into the EMU to try and figure out what was going on. That’s not exactly the news we were wanting, but I’m learning with Drake to take each day as they come, not as I hope or expect them to be.

When what to my wondering eyes did appear?

About two weeks later, he had the big one. I’m sorry it had to happen to Ms. Lori, but I was glad that someone other than me and Shane had a chance to see him go out. At my usual 2:00, I walked in the school only to find Drake not in the class room, not anything too unusual. I asked where he was and the assistant said he was at the nurse’s office with Lori. When she said it wasn’t a weight check, I thought I’d better hurry up front. Grant and I walked in to find Drake limp and not responsive. His oxygen levels had dropped to the low 70’s. (I was told he had only been in there for a couple minutes) Connie the nurse said typically babies are blue at this point and suggest I call the pediatrician. Taylor Swink cleverly took Grant with her to the classroom. Yes, at this point I was getting ready for panic, trying not to cry, I knew I might never recover. How do you react to the sight of your child lying practically lifeless for almost 20 minutes by the time we got in the car? Lori (Drake’s teacher) suggested letting her take Grant to Grandma Carole’s so he wouldn’t have to go to the ER with us. Thank-You Lori!!!
Dr. Y said I needed to get him to the ER immediately; he would call ahead and meet us there. Of course Cone was the closest (5 min.) and I went straight there. As I stood in the line to check in for what seemed like an eternity, a nurse came up to me and asked what I was there for. I said,” My child has been unconscious for 30 minutes.” I had no idea how quickly people could move and we headed for the back. They immediately started an IV and he didn’t even flinch! Taylor showed up a little bit later. I was glad to see her; the ER is not a great place to sit alone with your unconscious child. She was nice enough to move my car away from the front door and turn off my hazard lights. Shane showed up a little while after that. Only to find out after x-rays, blood work and two hours, they didn’t know what to do….. I did!!! “Stop what you are doing and take me to Brenner’s Children’s Hospital!!!” By then Dr. Y arrived, called Dr. H and then we waited for the transport unit to show. No one could argue, no one knew what else to do.
When what to my wondering eyes did appear? But a boy with bright eyes and a grin from ear to ear.
Yes, Drake came out of his, whatever it was. They decided to transport anyway and run more tests at Brenner’s. Did they find anything? NO!!! Oh yea, I was still in my bathing suit from earlier in the day when I thought I was just going to pick-up Drake from school. I think we left the hospital around 9:00p.m. (Note to self; always keep a change of clothes in car for both Mommy and kids!)

EMU

As I sit here in line to pick up my 6 year old for kindergarten, it occurs to me what an ideal time to catch up on Drake’s blog. Seems the summer took more of our time doing nothing than I realized. After several requests for an update, I’m back and ready to share more of Drake’s story.
I’ll try and give a quick catch up from where I left off. After more episodes, Dr. H set us up in the Epilepsy Monitoring Unit. It seems Drake doesn’t like his head scrubbed with sandy like abrasives to help the EEG leads connected to his head. It took approximately 45 minutes for the nurse to scrub and stick and 45 minutes of crying (Drake that is.), his head was bandaged up so the wires would hold for the duration. We were told that the stay could run about a week at the most and we’d have to wait and see if they could possibly catch one of his episodes. (The passing out, oxygen dropping, etc.)
I have to say the room is about half the size of an ordinary hospital room. The stay was uneventful until the 3rd night when Drake was so upset about bedtime. He was in the middle of a screaming fit, when out he went. Shane and I looked at each other and couldn’t quite tell if he finally went to sleep or he was having an episode. There is a button to push which is connected to his wires to try and give the doctors a pin point in time to go back and review. Guess what it showed? NOTHING! So after 4 days they let us go home with “possible breath holding spells”. I’m not even going to give all the reasons why that was not possible, but after seeing the ENT and another Neurologist, they agreed with me. (Oh yea and the stay cost a whopping $27,000 for 4 days, crazy!)
Oh yea, and it took them 3 days to get his meds brought in at the right dose and time. Thank-you God for leaving me half a brain from my teenage years so I can keep up with my children. I think he only allows us that much as adults or we would still know everything and never have children.

A Time to Relax.

Then there was a friend, Wendy. Yet another person put in our lives to help Drake. She is a GSO firefighter, but more importantly, she is a message therapist. She hasn't worked often with children, but surprisingly enough she has done a few special needs kids. She never judged or felt insecure with Drake, she just had a way about her. She quickly figured out he liked to swing and that being held close was a comfort. With most people, he just cried no matter what we did. With Wendy, he found peace with her, he seemed to let go even if it was only for 15 minutes at a time. I tried not to watch everything she did, I felt he needed that break from me too. I would peek in from time to time just to watch her put her hand on his heart and listen. I almost felt guilty for watching such an intimate moment, but it was amazing to see him give in to her. We would joke later when I called it the "Jesus" position. He stayed so curled up and closed to the world. But, when Wendy started working both legs would stretch out, arms layed out flat, head turned to the side with eyes closed and he finally relaxed. It was a beautiful thing to watch, I even got a little jealous at times and asked how do you do that? She said I don't take it personally and I guess he could sense that! Since I knew I couldn't take the personal aspect out, I let her do her thing every other week and enjoyed the fact that Wendy was another blessing given to us through Drake.

YUCK

So shortly after meeting The G.I. doctor, DR.Hill, his first question was what are you doing here? Of course, he wasn't crying for the 45 minutes we were their, isn't that always the way? He seemed short and in a hurry, wasn't at all what I expected in a doctor. He changed a medicine he was on for reflux thinking this could be causing headaches. Seemed like a simple fix, I hurried to the pharmacy to get the pill which would help Drake stop crying.

Guess what, it wasn't the reflux medicine. So I hesitantly called the Dr. back only to find he was actually concerned and scheduled a 24 hour probe. Yes our first overnight stay at the hospital. I was secretly thinking, good, finally someone in the medical field can see first hand how much he cried.They put a horrible tube down his nose and strapped him head to toe on a aboard to get x-rays as he screamed in terror! I can't imagine not being able to hear or see well, what he endured that morning had to have been a cruel world to him.

We did get through the night and the results said he was refluxing something like 72 times a day. YUCK, I'd cry too. His meds were doubled and yes, It did seem to help. Didn't stop the constant crying, but it did help!

Priceless !

At this point Drake is 4 months old. Who puts their baby in school at this age? Wasn't I a stay at home mom? Didn't I give up a career as one of "Greensboro's Finest" to be with my children? All these thoughts ran through my head as we entered the school in January.

I made a plan for us, the four of us(T,S,G & D) would take Drake to school. I thought if I had Daddy and Grant to take my mind off dropping Drake at GSO CP, that it would be exciting. WRONG!!! I know you'll never guess this, but I cried, no actually I sobbed as we were leaving. I wasn't suppose to do this till kindergarten, the whole thing actually caught me off guard. I knew this was the place for Drake and our family, but dropping your baby to others, was a step I wasn't prepared for. I now know what it's like for parents leaving their children in daycare while they go back to work for the first time. And yes, I did leave crying that day, but once again, time healed that wound and quickly.

We started Drake at 3 days a week, that was my agreement and there weren't rules saying different at the time. I think by the end of the month I started 4 days and actually enjoyed dropping him off! I saw how he reacted to his environment for the first time, that he knew he was somewhere besides floating in space!!! I could tell he knew when we got there, don't ask how, I just knew.

I tried for several months to come up with ways of letting him know where we were going in the mornings. I forgot to mention, he cried for the 45 minute commute EVERY morning and EVERY afternoon. As I told this to Lori one day, she immediately jumped into action! She first came up with the idea of a vibration pillow, it worked 75% of the time. Then she came up with a way of taking a weighted pillow and laying it across his lap to hold his hands down. He had this severe hands flying, I'm falling type spells. This feeling would scare him and he would start crying all over again. As a reminder, at this point he still cried 85% of the day and had very little calming once he got started. And once again, God did prevail, these techniques helped at night time too. He actually started sleeping for a few hours at a time, in stead of minutes. What a miracle!!!

After several weeks went by, I found comfort in leaving Drake at the Greensboro Cerebral Palsy Infant Toddler Program. I started getting my "grove" back, as some call it. No I haven't lost the pounds I added during all this, no my house is still a mess and the laundry's still behind and yes, I still cry from time to time. I Do though have a good outlook about Drake, about my family, about how the world isn't so cruel after all. How does that commercial go, PRICELESS!!!

Drake's Story Video; please click on picture

Drake's Story

An Exceptional Family

After we accepted the space open for Drake at Gateway, my friend Leslie reminded me that there is a Greensboro Fireman who's child use to attend Gateway. I had forgotten he had a special needs child. David was even my training officer when I started and it seems God was going to have our paths cross again. Interesting enough, he wrote a book about his little one;Exceptional Spirit.( http://www.exceptionalspirit.com/) He sent me a copy of the book to read when I felt ready. Everyone told me not to, that it would be too difficult to hear, that the book would be depressing. (probably because everyone figured I cried enough as it was) Of course, I read it and enjoyed every inch of it! I was meant to read that book, funny how David just knew that was what I needed.If it had been any other book, I'm not sure I would have felt the connection. I picked up the phone, he knew I was going to call. I'm not sure if it was because of Leslie, or the fact he knew I needed someone who understood.

He came the next day, almost like a preacher would. He listened to me talk, he listened to me cry and he listened to my heart. He said to me" I know you are going to find this hard to believe or even understand, but I'm almost envious of you, jealous of the journey you are about to take. You have been given a gift and it's up to you to figure this out. I can now look back and wish I still had these days." WOW, how could someone feel this way about my life? This was quite a revelation to me. He had me question not only myself, but my faith and I thank him for putting these thoughts in my head that still ring true today. David, his wife Jeanna and Corbin were put here in my life to learn from. In a way it's still a part of Corbin living on. He is a very spiritual man with faith bigger than I can or could understand. He trusts in God completely and knew then as I'm sure he does now, that this was and is no mistake.

They gave me a special swing for our playground which Corbin used.I think of that him every time we go out to use it. Drake also by chance(ha,ha,ha) ended up being able to use a unique seat the Bullins donated to the school (one which gives support for those that can't sit on their own). They as a family made a special garden in memory to Corbin at the Gateway School(I see foreshadowing in this story). I wanted to say THANKS to this family for giving me some peace at this time in our journey!!!


There is a song that still to this day makes me choke up and think about this time in our lives. It's called - "Your Gonna Miss This", By Trace Adkins.The chorus goes like this;

Huh, it's hard to believe But you're gonna' miss this

You're gonna' want this back

You're gonna' wish these days

Hadn't gone by so fast

These are some good times

So take a good look around

You may not know it now

But you're gonna' miss this

You're gonna' miss this Yeaahhhh...

you're gonna' miss this...

Back to Reality?

So now that we are back and the trip went great, there were a few moments not so great. Drake had 4 fainting spells. Luckily, I am starting not to panic or feel the need to rush to call all doctors and get to the hospital. I'm not sure if this is a good thing or not, but it helped get through the weekend with out spending it in the ER.

We already had an appointment with the neurologist on the Tuesday following our trip(Thank-you GOD!!!). Even though she's not my favorite person, I went in with a steady heart and mind, and decided to try get this thing figured out. At least get started. She is ordering a test which we will have to stay at the hospital for 3-5 days minimum. Trying to catch one of these "episodes". Seems there is more concern now that they are happening more often. He had 2 more the week before we left for our trip + the 4 in Atalanta, puts the docs a little more on their toes. There is also another test ordered which will be 24 hrs in the hospital to check for sleep apnea and reflux again. She's somewhat concerned about him having these episodes at night when we might not know they are happening.

Dr.Harper seems to think that these fainting spells might be more related breathing/apnea rather than neuro. Let's hope so, even though I don't particularly take a liken to her, I am pleased with her promptness to help figure this out. We will see what the results are and her follow-up skills with this problem.

We already had an appointment with a Dr. Wooten @ Raleigh Neurology Associates in May. I'm keeping this and going for more or less a second opinion and to see if I need to change Drake to another office. I'm not to fond of the thought of driving to Raleigh, but I hear stories of families traveling much further to see who they feel is best for their children's care. I'm hoping we can get these testes done before we go to Raleigh so that can be behind us and move forward instead of living in this limbo again.

Road Trip!!!

Look what came just in time for our first real "road trip" to Atlanta, GA! How exciting to take the boys somewhere, away from here, with daddy all to ourselves. The trip was planned for Grant's 6th birthday present. For those of you that don't know, Grant is a fish fanatic. So we thought it would be appropriate to take him to see the WORLD"S BIGGEST AQUARIUM! When we first started planning this trip the thought was to take Grant alone, thinking he might want some "me time", but as turns out it at dinner one night he had different plans in mind. Shane and I were talking about who would take care of Drake and all the details that went along with it, when Grant said,"But, I want Drake to go with us to see the aquarium too." How could we argue?!?!?!?

I'm not sure if I was more scared of taking Drake that far out of town, away from all the doctors or if it was really ,I secretly wanted some, "me time". As it turns out I couldn't have dreamed of a better time with the four of us. The travel down went well even with the pit stop every 45 minutes to change Drake. Seems a long road trip is the cure for cleaning out his system! We had great food everywhere, slept well, played hard and went to all the sites we could fit in to a single weekend.

The aquarium was magnificent, a real treat for both boys. The views of the ginormous fish tanks were such that I think Drake had a chance to understand the beauty of the ocean. We left there and grabbed a snack and went across to the Coke museum, too cool for the grown-up kids! After a long hike back to the car, we jetted over to the Varsity. A true hot dog loving, greasy burger, chocolate shake, drive-in landmark. Soooooooooooooooo glad Shane found this spot and insisted we give it a try! We were told they serve several hundred people and cars A DAY, we believe it!Following that, we topped of the day with Grant getting to swim in the indoor pool back at the hotel.We went to a crazy good place for dinner, a Mongolian noodle house. You go and pick your noodle or rice and all the toppings from vegis to meat and add your pick of GREAT sauces to top it off. They then cook it on hibachi grills and when your done, you go back for more. Can't wait for one to come to Greensboro!

The next day was a trip to see the largest dinosaur bones known to man at the Furnbank Meuse um of Natural History. Only to find a real treat for me, there was an exhibit called-Blind/Sight:Conversations with the Visually Impaired. What are the chances to see what all the doctors and therapist talk about with Drake's sight. Even though no one knows for sure, it was so enlightening to get a visual of Drake's possible or lack of sight.( I'm trying to find out if the exhibit will be any where in NC in the future.) After that, we headed to the Atlanta Zoo! The pandas were a site to see and oddly enough the entire Zoo wasn't too long and we got to see it all in about an hour & a half. Pizza was the hit of the day for lunch. Swimming again, while mommy got in a little shopping time. Seems a waste to go to Hotlanta and not check out a few shopping sites! I think at this point we were all to tied to go any further and decided to have dinner in the hotel restaurant, Ruth's Chris Steak House. Probably the only time to go on a romantic dinner for four at such a nice restaurant.

We even made it home with out an "Are we there yet?" We are now home safe and thankful for the chance to have spent some time together as a family, a real family, not handicapped one, just a family.

Thank you Grant for this gift to us, on your 6th Birthday!!!

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.

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!

1,2,3, how many doctors do you see?

As I sit here looking back at my calendar, everything becomes a haze of memories. I can't decide weather to tell every little detail or skip some of the daily struggles. I think I should start by saying at this point Drake is still only less than 4 weeks old.

My mother(Marian) began coming every weekend to help with the laundry and rocking of the baby. She also accompanied me to several doctor appointments. It seemed great to have an extra set of ears to hear all the information thrown at me so I could go home and explain the best I could to Shane. He went to as many doctor appointments as possible, but that became MY full time job. Shane went back to work after Drake was two weeks old. He has been the BEST dad/daddy/father any child could wish for! He continued to work 7 days a week and still not complain when I needed him in the middle of the night to help.

My best friend Kennette started coming to rock Drake several nights from 9 p.m. till midnight. We would set an alarm clock to get up for her to go home. It was the one way she thought she could offer relief before the all night crying spells began. (At this point it seemed Drake would cry even when you touched him.) My mother-in-law(Carole) helped during the weekdays weather it was to listen to me or share a cup of coffee. I also had a baby nurse(Ms.Thelma) to help. She was there to hold Drake through the nights while we tried to settle back in to reality. Now that I look back it sounds like I had it made. Maybe I should have bought a box of bonbons and enjoyed it. For some reason though the sound of your child crying consistently took away from even the simple things!!! Even the joys of a newborn.

So the doctor appoints started flowing like hot lava. You could see them coming, but couldn't run fast enough to get away and there was certainly no way to stop them. After the appointment with Dr.Kirse(ENT) at Brenner Children's Hospital, we decided to have all possible doctors in one location. It would take a year(or two) to tell about all appointments held. I will do my best to summarize the majority and hit on the important stuff. Looking back at my 2005 calendar, Drake had an 1-3 appointments every week for 17 weeks in a row.

Dr.Hill (gastroenterologist) was an important doctor. Little did I know at the time he would be the one to play a key part of Drake's well being. He began putting him on Previcid to help with reflux. It seemed he was on a different kind of medicine from the pediatrician and Dr. Hill said sometimes it's known to cause headaches. Great, first I was starving my child, then providing headaches. He did reassure me this wasn't colic, I'm wasn't sure if this was good news or not, since colic usually subsided at some point in time.

The next set of people we started seeing was at the CDSA(Children's Developmental Services Agency). This is a place where Guilford County provides services for families that need help. I remember talking on the phone, in desperation, to a woman who was an Occupational Therapist. Her name was Kim Millsaps, she began to give me tips on getting Drake to use his bottle better. He seemed to not enjoy taking his milk like most children. I thought wow, here is someone that deals with this daily and I had never even heard of what an OT does. We went to visit the CDSA for temporary therapy with Kim. Silly me,thinking "we won't need such help for long". There we were introduced to Nancy Norman (head of the CDSA) who showed our family they really did care about Drake. And then Brooke Juneau with Family Support Network / M.O.M.S.(mothers of miracles).

We were assigned a "case worker" Carmen Ward. Yet another angel sent to us. I knew there was a long list of doctors and therapist for us deal with, as it turns out God gave us Carmen to over see the beginning of this endeavor. She began setting us in place with all the help we could get from therapy to support groups to contacting doctors when I didn't think I could make one more phone call. I was told she would be with us till Drake was 3 (CDSA protocol). Once again thinking, Yea Right, we won't need it that long.

Sometime in between all this, we began seeing the Audiologist(Claudia Mason) who helped get Drake his hearing aid! Which by the way took him 2 years to decide sound wasn't such a bad thing. He cried at every appointment which made it very difficult to see if he was adjusting to the sound the BAHA hearing aid offered!

Next,the Geneticist (Dr. Tamison Jewett), she proceeded to explain to us the unknowns of Drake and her deepest concern for his well being. She is doctor which has true compassion for her patients and took two hours explaining Drake's abnormalities and unusual features. That wasn't an easy appointment either, but one of importance. I guess this is where I realized we had a child with "Special Needs". You NEVER think you are going to hear those words come out of your mouth when taking abut your own child! I don't guess there is anyway of preparing for such moment. Drake decided he would be full of "moments"!

We saw the Cardiologist, Urologist, Physical Therapist, Nutritionist and a Develpomental Pediatrician(Dr. Mary Christiaanse, I'll tell her tale later) all with little excitement! Which was a good thing in my book since no news was good news! We even began Drake on Massage therapy(Wendy Cheek). She would come to the house out of the kindness of her heart to work. It was the first time I recognized Drake could relax. We joked it was the "Jesus Position" for him. After he finally let go and relaxed, he would lay there flat on his back with both arms spread eagle. I thought to my self what kind of drugs does she give him. Nothing it turns out, but there was this stuff called "Gentle Baby". It cost $75 for a half ounce bottle, I would have painted all the walls in my house if I could have. It was truly liquid gold, some sort of essential oils that seemed to help when Drake smelled it. Only a couple drops on your finger tips would do!

The optomologst(Dr.Weaver) proceeded to tell us how difficult it was to determine his ability to see. This was one doctor that got a zero in field of personality. He wasn't very polite or personable, which seemed odd since ALL the doctors till now went out of there way to explain there views of our son. He was actually down right abrupt, and it was like pulling teeth to get answers. After a couple months of once again consistent crying, at each appointment, he explained Drake was blind and might have no vision AT ALL! This was the first time I went for a second opinion at Duke to see a Dr. Buckley. He explained that Drake was in deed blind, but to what degree couldn't tell. He assured me that Dr. Weaver was one of the finest doctors he knew and thought Drake was seeing (funny analogy) one of the best. So I decided to put aside the personality conflict and settle for a great doctor. But for those of you that know me well, I did have to tell him that I'm not going to settle on being told the bare minimum about my son and that my questions need to be answered with out argument! Since then we have gotten along beautifully!!

There was also the plastic surgeon(Dr.Argenta) who needed to see his ears. The shape and placement would be something to keep a measure on. He said when he was 5-6 years old we will talk the possibility of surgery along with Dr. Kirse. This will be an on going observation to deal with of Drake's deafness. Dr.Kirse had previously ordered a CT scan where Dr. Argenta found Drake also has a submucus cleft pallet. This is where he has a cleft pallet, but covered by a normal shaped mouth. We were told he would check back also in 5 years with this. There is a 50/50 chance weather children need surgery for this. Yet, again another reason he probably couldn't suck on the bottle well. Drake was also found to have a floppy pallet and narrow passage ways, the reason he sounded like he snorted and had a week cry all the time. The doctor was also concerned with Drake's head size(microcephaly) and shape. There was little opening at his soft spot(fontanel) and referred us to the neurologist.

This is Where the Whirlwind Begins!!!

Let me begin by saying, God has brought people into our lives to help us through this.Family and friends included! It has been interesting to see how people react to such news about a child. A person's true colors really do shine through at times. For those of you that have truly been there you know who you are. And we thank-you for being here and holding us high to help Drake and our family deal with such obstacles.
There was an angel nurse with Guilford County Dept. of Public Health, Joy. She came to weigh Drake and check on me.(Guilford Co. does this with all new borns now) I think the hospital gave her a heads up about the crying spells. (Thank-you Guilford Co. for trying to keep an eye on the new postpartum mommies!) Not to mention I was listening to Drake cry more than myself.(colic?) Her job was to come 3 visits in a two week period and check on the baby.I'm still not sure weather it was me or the baby she really came to check on. Joy came to our home for over 9 months and helped us understand the importance of advocating for our child, (she also has a special needs grandchild) Little does she know the impact she made on our lives.
She was very concerned with the fact he cried all the time and wasn't gaining weight. She listened to everything I thought it could be. She had plenty of suggestions to help, some worked, some didn't. I was desperate to do anything to get Drake to sleep and stop crying!!!
With in two weeks Drake had an appointment with the Audiologist at Women's Hospital. This is where we found out that Drake was indeed Deaf. She tried to explain he had a Bone Conduction Hearing Loss. This is where his cochlea works, but somewhere between the outer ear and inner ear, there was trouble.Probably due to the lack of open ear canals, who knows?. She referred us to an ENT in Greensboro,Dr.Jacobs.
The following week, I had a follow-up with my OB, Dr. Lowe. (which by the way delivered both my children) This is where I started taking medication for the crying spells. He assured me I didn't have to feel this way all day long. He never belittled that I might be crying because of my circumstances with the baby. I'm so grateful for the recommendation of the medication! Even though I still cried, it seemed I could focus on the importance of taking care of Drake and Grant!!! I think what might have done it for me was when I was sitting on the side of the tub one afternoon, crying AGAIN, when Grant came in. He asked"Mommy, why do you cry all the time?" Too much for a 3 year old to have to understand! That's when I thought I'd better "Put on my Big Girl panties and deal with it!" So thanks again to Dr.Lowe for allowing me to do so.(take the meds that is, he,he!)
So in the mean while, I was once again blessed, to have a group of family & friends from MOPS (Mothers of Pre-Schoolers), which started bringing my family meals. For almost 6 weeks, my kitchen was wondering what happened! Who ever could imagine that something as simple as not having to cook could be such a BIG deal? I will admit I missed 95% of theMOPS meetings that year. ( more details later)

So on to the First in the series of Drakes Medical appointments:
Dr.Jacobs (ENT), proceeded to talk to me about the minor concern of Drake's Ears and the BIG concern of his feeding habits. She played the biggest part of his nourishment and feeding issues. This was a time I was truly happy I hadn't tried to breast feed, since I found out he didn't even know how to suck!! Dr. J suggested a particular bottle called a Haberman Feeder. Never heard of one? Well, they don't sell them at Walmart or Target! My mom (bless her) ,who was with me at the time, and I had to go to the hospital and get them. At $25 a pop!!! Yes, can you believe it?, And that wasn't a 3 pack either like the Gerbers or Dr.Browns.
The concept with the Haberman was made for children with cleft pallets.( but, Drake didn't have one of those?) All the child had to do was to bite down or press their lips together on the nipple and the milk would drip or Squirt if you will, in the mouth. It came in a 5 part nipple and yes, the parts were TINY and go down the drain EASILY!!! But all the same he immediately got the idea and began feeding. Nothing like starving your child for 3 weeks, only to figure out this concept.
She also said she needed to refer us to another doctor because she felt Drake had more issues than she could handle. She began talking about different "syndromes". At the time, I had only heard of Downs Syndrome and began to panic. I think that was a moment of whirlwind when I realized things are far more serious than I originally understood.
Now I need to remind you that through all this Drake was crying approximately 20 hours a day. Of course The feeding was the first consideration of the culprit, only to find it didn't stop with a full belly.

Happy Birthday Baby Drake 08/24/05

The delivery was a c-section. Between the docs and ourselves, we thought it would be a better choice , not knowing how things would go with the "only baby in the world syndrome" delivery. Things went beautifully!! I think I even heard a sigh of relief in the room after Drake was born.

The first thing I noticed after they handed him to me was the shape of his ears. I said "somethings wrong with his ears!" They were the shape of little ruffled potato chips. I had never seen anything like them, cute, but different. The docs didn't say much about it. (I have since learned they seldom do)

Afterwards, Shane and the baby went off to do the first bath thing while I tried to enjoy my last few moments of rest and recovery. ( I had joyfully prepared for this moment since my first son "Grant" was a cesarean baby too.) After a while in recovery Dr.Dees, the pediatrician, came in to see me with an update. She told me that his ears had very small openings called aural atresia. The shape was also defected called microtia. At that moment I knew all wasn't well. Call it mothers instinct, call it paranoia or call it whatever you wish, but this was the moment I knew things were never going to be the same. I cried as they wheeled me to the room where everyone could come to celebrate in the birth. All I could do was cry every time someone asked me how we were. (maybe a little postpartum, maybe not) I think I stopped long enough to take a nap, just enough to wake and find Drake liked to cry too. I should have known he cried more than usual. Weren't they at least wait suppose to wait till you get home to start that?, not Drake. He wasn't feeding well either, but we were learning his ways the best we could. I did feel a little more confident with the second child, after all who can't deal with a child that cries every time you touch him? ( a little foreshadow for those interested)

The next day the pediatrician came in to tell us that Drake didn't pass his hearing screen. Shane and I still today laugh about how we talked that night saying"No problem, we can learn sign language!" Dr. Dees also mentioned his chin was slightly small. At the time we didn't think that was something to be too worried over. (they forgot to tell us he was considered "a poor feeder".) So four days later, we headed home to live happily ever after.

Ultrasound City

At this point, I began going to Duke for ultrasounds apox. every 2-3 weeks. Since none of the doctors knew what to expect they offered a couple test to try and help see the chromosomes better. AT Mt.Sinai University in NY,there was one particular test that set us back several hundred dollars.We felt the need to try this to find out what we were dealing with to help us make the best decisions and know what to expect. (Little did we know that we would spend the next two years trying to figure this out.) This particular test called the CHG, was the most advanced test to see if there was any parts of the chromosome missing(called deletions) or extras(called duplicates). The results showed neither and gave us an 80% chance that there would be NO problems. ( What a plan GOD had for us!!!) Who wouldn't like to go to Vegas with those odds?So we proceeded to go to genetic counseling, even though it seems all I did was cry. The counselor was very reassuring and good at explaining that it was nothing we could have done to change this. I was worried "Did I take too many Advil or maybe I should have been better about keeping up with those damn BC pills". That wasn't the good part, you should have been there when she asked us " is there any chance you two are related?" Of course I replied" Yes, we are married." The counselor said,"No, I mean like cousin, sibling, etc." And yes, she has had all of the above imaginable.So after that I decided to make the best of our situation and try to research this rare problem all I could. How it happened, why this occurred, what did others look like that had such a chromosome abnormality, what was the life expectancy? Wondering what I found? NOT A THING, zilch, zero, nada, nothing. I kept forgetting that Drake was the ONLY one in the world with this particular chromosome abnormality. This seemed to be the beginning of finding out the extreme rareness of it all and everything isn't so cut and dryLet me go back a little bit and explain what exactly A Complexed Balanced Translocation is. In the world of chromosomes every one has 46. 23 from the mother, 23 from the father. At conception Drake's decided to rearrange them little selves differently (called denovoed). In a typical "translocation", it occurs with only two. It's sort of like two pens switching tops. The counselor said this happens quite often and people don't even realize it. As long as there is nothing missing or added there shouldn't be any problems.(that is where the 80% chance no problem came from) With Drake he has 3 chromosomes involved,#1,4,&14. With out a picture to show, these 3 little buggers mixed themselves up and put themselves back together again. Think of 3 pens broken in about 5 different places and while mix/matching taped back together.So the counseling continued throughout the pregnancy, just to say what great parents we are.(like we didn't know this) The Duke doctor held several Level 2 ultrasounds(really cool 3D pics). They wanted to keep an eye on his growth from his head to his toes. I held my breath every visit and every visit showed a perfect(which he is) baby boy. They even did an electrocardiogram on his heart. It seems a lot of people with chromosome problems have heart trouble. Not Drake, once again, perfect!With that sigh of relief, we were ready to have a baby!!!(keep in mind aprox. 20 weeks have gone by since all this started)Now don't get me wrong I cried myself to sleep several nights. And some say why would you want to know or it's better not having that stress on yourself and the baby. For me and Shane we wanted to know! We wanted to prepare and know the facts. Little did we know, how little we didn't know.But it made us feel better, It made us stronger together. I can look back now and still to this day know I would have done the same thing!!!!!!!!!!

Drake's Story

This is something I should have done for Drake the day he was born. I will do my best to recreate the past and bring you to present day. Please keep in mind as you read our journey, this is not a published book, there has been no proof reading and I will make several mistakes in grammar and spelling. It's just me, really me, a mom trying to share Drake's story.

You must remember; "The days seem long, but the years short."-unknown. This has held so true for our family. Shane, Trish, Grant & Drake

When I was 17 weeks pregnant there were several routine blood test done . We were told to come back in for a retest, that our baby had a chance of Nero Tube Defects (ie;spinabifida). The tests were known to show false positives on such a regular basis, we opt to have a second one done. This time the results were 1 in 2 chances of Downs Syndrome. It was so unusual for these tests to show so different results we chose for an amniocentesis at 21 weeks. The results came back one week later. It's amazing how 5 weeks of waiting to hear everything is going to be okay, can seem like a eternity! I'll never forget the phone call from the doctor. The three of us(Shane, Grant and myself), were heading out to dinner when the phone rang. I can remember the whole conversation with Dr. Lowe. All he could tell me was " Your son has a something called a Complex Balanced Trans location of 1, 4 & 14. I've tried calling others and no one seems to know what this is. We've contacted doctors at Duke, Wake Forest and Mt.Sinai in NY. This is the reason for the false positives not showing correctly.We are referring you to genetic counseling to try and help you understand. I'm sorry for the lack of information we have to give you."
I hung up the phone after several, "I don't understand and could you please explain that again". I thought at the time doctors knew everything.
Have you ever had a moment where time seemed to stop and nothing you've ever been told or heard before seemed to matter or make sense? This was that moment for us. Not only had I forgotten from school that we each had 46 chromosomes, but that the miracle of each person coming to being was truly "A Miracle".