Wednesday, April 18, 2007

Hello? Poison Control?.......

The very words I thought that I would never say....I said late Saturday afternoon! Remember me saying that we have to give Kyle Clonodine every day for a nap and every night, along with Melatonin, to go bed? Well, I had his medicine, just the Clonodine, in a daily pill box, in my center console of my car, when we were going to Georgia Easter weekend. I saw the pills earlier Saturday, but didn't put them in my purse 'cause Kyle has a tendency to ramble for the car keys and/or cell phone.....how ironic...right?

Anyway, I was standing in front of the car talking to a couple of friends of ours.....all three of us watching Kyle get in and out of my car trying to crank it and unlock the trunk. I realized that he opened the center console and remembered that Gator had left 3 Snickers bars in there and that they had probably melted by now and I did not want chocolate all over the inside of my car. I took the Snickers out and proceeded to the trash can, with my back to Kyle for a split second, and I guess he went back in to the console. (See Lee stopped me from throwing them away, saying he would make Snickers popsicles, and had my back turned for two seconds.) I got Kyle out of the car for him to tell Lee and Brian bye and Lee then proceeded to the passenger side of the car to make sure Kyle did not escape....it was then that my heart stopped! My child was foaming at the mouth! There was a flash before my eyes and I quickly realized that he could not have rabies....our dog, Hershey, and Lee's dogs, Jazz and Amos, have all had there shots and are fine, plus Kyle has not been bitten by anything.....and then it hit me like a ton of bricks.....Kyle had taken all of the Clonodine in the travel pill box!!!!! And I knew that there had to have been at least four, if not five, pills in that box!
Lee, Brian and I rushed Kyle into the house and proceeded to try to rinse his mouth out over the sink with the spray nozzle. I then called the after-hours number to our pediatrician (Dr. T we will be there on Friday and all is well, except for this little fever of 101+ that showed up today...but he's still bouncing around as normal!)...the answering service transferred me to Poison Control who then called ahead to the nearest hospital.....Wallace Thompson aka: death trap. I was not happy about any of this, but our son's life was at risk, though since he has been taking Clonodine for over a year, thought he might sleep a little longer...seriously - very concerned!

Because we had not had to go to WTH and I didn't know anyone that worked there really, I called my DSS Mama, Lynne Crocker...who I woke up and lives 10 minutes away....to ask who was there that I might know or who would take care of us. Lynne said that she and her husband Joe were on their way...and they made it to WTH right on my heals and I was only one mile away! With Lynne's connections and the fact that I too worked at DSS, we were taken very good care of and luckily the doctor in the ER was from CMC out of Charlotte, NC who now owns WTH.

They first did the initial questioning and tried to get Kyle to drink the "charcoal"...yeah right. And we tried keeping him asleep, then letting him rest, then waking him up, and then came the fun part...the IV! Now, we warned the nurses of how strong our monkey is, but they did not believe it until they attempted to put an IV in his left foot and failed twice all the while 5 adults are holding a 4 year old down who is practically zonked out! The finally got the IV in his right foot, finished hooking him up to all the monitors....heart, breathing, blood pressure, etc.....and did an EKG.

While this was happening, the nurses called Lynne over because they had a new report on an adult, so Lynne ended up working most of the night anyway while Joe sat with Gator, me and the monkey. (He also ran to the house to get Elmo....have you not met our Elmo....the poor Blind, Demented, Gingivitis Elmo.....but he is LOVED!!! and Joe thought he was Hershey's doggie chew toy....boy how wrong he way!) Anyway, Lynne later told me that the doctor asked her if I really worked at DSS and should he think that this was anything other than an accident? Of course, Lynne set him straight very fast and said No and that I was the best mama on the planet....don't know about that, but thanks for having my back! Of course, Dawn, the CPS worker on call, would have just laughed at the nurses when she found out it was me had they called. Gator just kept saying he was glad it wasn't' on his watch, because I would not have let him off the hook and he's probably right!

They finally let us go home about 1:00 am after the doctor jokingly said we may have found a cure for Kyle's insomnia..........WRONG!!!!! Kyle was up at 8:00 am! and was bouncing off the couches, running around the house and jumping on the bed while playing pirates. Now does anybody doubt that I birthed the Energy Bunny! Not even an adult blood pressure medicine overdose, that could have gone severely in the wrong direction and been very bad, could be this hyper 7 hours after leaving the hospital? Maybe I should have taken them instead....at least I would get a little rest for once! What is it like to have a toddler go to bed at a reasonable hour? I guess I may never know.

Wednesday, April 11, 2007

Genetically Speaking.....II

What are the odds? Well I no longer like that question! After hearing last Thursday that there would be a 50/50 chance of passing Fragile X to another baby and then that those odds go up another 30% if it is a boy..........the odds of us having another child may be slim to none. As much as that hurt to hear, it would hurt even more to hinder another human being. Now, don't get me wrong, I know that this is not my fault and that Kyle was a gift from God and meant to be, but we are just so unsure of the future now.

The genetics staff did take my blood and are doing DNA testing on me. The test results should be back in a couple of weeks and then
they want to test my mom, dad and grandmother. It would be very unusual for the FXS to be passed down from my dad and they want to make sure where the FXS is in our family history before making any further recommendations. Of course, now Scott and Jessica are very concerned that Little Miss "Pistol M&M" may be affected too. The genetics staff has assured me that there would be a very slim chance that she would have FXS because Scott would have had to of shown some of the characteristics of it, but we still need to wait for the other DNA tests to come back. And I pray that it Scott is not a carrier!

What are the odds that Kyle will...? "grow out of this"? be able to live independently on his own? be able to go to regular school? talk? marry? have children of his own? be able to enjoy Walt Disney World?

Wouldn't I love to be able to answer these questions! The genetics doctors would too. They can not guarantee that he will not end up in a group home one day or be able to fully live independently on his own. They hope that they are wrong, but they do not want to give us false hope. Everything depends on his attitude, therapies, agencies and assistance that he is able to receive.

We already have him in an early intervention class in school, public and private therapy (occupational and speech), Medicaid, and have the ball rolling at the Department of Disabilities and Special Needs (DDSN) and the Piedmont Autism Chapter. We have bought (or have been given) books, toys, computer software, online websites, and therapy items. I also went to my first support group meeting last night.

I guess now its up to God and Kyle to see where this goes from here. All we can do is our best and try to give him the best....and PRAY! And of course LOVE HIM WITH ALL OUR MIGHT even when he's pitching a fit!

Wednesday, April 04, 2007

Calling the Easter Bunny.....

If you need help this weekend, just call us because we have your partner in crime...........the Energizer Monkey! This one keeps going and going and going....you get the picture. And for proof, I've included just a few photos of the Monkey in action last week at the park and then at home.

Now when you look at our Monkey, do you see MENTAL RETARDATION?!? I think not, but what do you do when you read all of this bad stuff about Fragile X Syndrome and Autism? I know Cuz I'm not suppose to be reading anymore until the genetics appointment tomorrow, but I've only read a little (haha).

He's smart, responsive (non-verbally of course), understands everything you say, and has more energy than our USA Olympic Athletes combined! He is quickly picking up sign language and knows how to work the DVD players and crank my car! Yes, I alerted another police officer (one that is kin to you Mama Patti) today of the possible 4 year grand theft in our household!

Now how could a mother in her right mind (no comments from any of the peanut galleries out there) let someone call her child mentally retarded when they know they are NOT! I'm done with the guilt and ready for a fight 'cause our Monkey is not and I will not allow him to be labeled that either.........so just try and stop me. And Lord be with the doctors and brace them for Hurricane Betsy 'cause she's on the war path!

Now I know that he has to overcome and catch up on a lot of developmental issues and we are dealing with each of them, but I refuse to believe that our beautiful, little tease, full of energy, loving, smart, non-verbal child will end up in a group home. If I have anything to do with it, and I will!, he will grow out of this and be a normal, fully functioning young man in no time!
Any objections............deal with it or Hurricane Betsy!

Tuesday, April 03, 2007

Is this MY fault........

I know you have been wondering why I haven't updated Kyle's blog lately....well hold on to your hats 'cause we have added another "spoke to the wheel". After I returned from my three weeks training in Columbia, I had a lot of catching up to do at work, home and more importantly - playtime with Kyle....yeah spent time with Gator too (LOL).

Anyway, I received a call from the genetics lab and 3 of the 4 tests had been completed. Two of the tests showed no abnormalities, but the third showed a positive result for Fragile X Syndrome. Yes, we have something else to worry about and I don't like what I am reading on the internet. My cousin Kristi told me to stop reading and concentrate on our Monkey....just to wait and see what his genetics doctors say on Thursday.



I had a bout with guilt because I was the one that passed the "X" gene to Kyle that gave him the "fragile X syndrome". Now, I know logically that it was not anything that could be helped, but it was like I was going through a period of grief.....again....first autism and now this. I know that God is not going to give us more than we can handle.....but......????? With the help of wonderful friends, family and Kyle's doctors, I am getting over the "guilt" and focusing once again on Kyle. Just like Leigh Anne told me, take the internet with a grain of salt and listen to Kyle, my gut feelings and his doctors because every child is different and the internet usually has the worst cases on there.


I know you are wondering....what is Fragile X Syndrome.....it is "the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. " (according to www.fragilex.org)


Fragile X syndrome can cause a child to have autism or an Autism Spectrum Disorder (ASD) though not all children with fragile X syndrome have autism or an ASD.
FACT: For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation.
FACT: Approximately one-third of all children diagnosed with fragile X syndrome also have some degree of autism.
FACT: Fragile X syndrome is the most common known single gene cause of autism
For more information please click here: http://www.fragilex.org/html/autism.htm



So, is your head spinning like ours has been???? But you look at Kyle and you do not see "mental retardation". I can not imagine our precious Chunky Monkey in a group home....he's too smart and I will not allow it! As Gator said...."we will beat this and we'll show them all" that our Monkey will overcome whatever is thrown at him! And to prove that the last three pictures here are him signing "I Love You".....see one way or another....he will be able to communicate!