Genetically Speaking.....

The latest in the quest for a diagnosis for Kyle involved Genetic Testing. We spent over two hours yesterday repeating (again) our family histories, stories, medical backgrounds, etc. I just whip out Kyle's 3 inch file folder with medical surveys, IEPs, therapy evaluations, school records, immunization records, etc. and hand them over to be copied into yet another doctor's file on our Chunky Monkey.


We won't have any test results for 4-6 weeks! So, again, we wait. I just want to know what we are dealing with in order to move forward. I feel like we are trapped in a time warp! I know that all of these specialists are working together to establish a formative diagnosis and that they don't want to rush it.........which is the right approach....but I am sick of spending my life in a doctor's office.........and believe you me Kyle is too!



Unless the want to take a picture of you and then we turn on the charm!

Just don't know where he gets this from?



Genetics?

You be the judge!

MRIs and EKGs.....we need a BREAK!

In order to rule out seizure activity and heart problems, Kyle's specialist ordered an MRI and EKG. There is nothing more heart breaking to a mother than to watch as her 4 year old is held down by his parents and nurses in order to inject an IV into his arm....then only to watch as he passes out in 6 seconds after receiving the "sleep" medicine. Kyle went so limp that he could not support his head.......just like an infant.........in 6 seconds flat! We then had to watch as he was put into the MRI machine and sit there just praying for it to be over. I almost rubbed a hole in Gator's hand worrying. After the MRI, they did the EKG. It took Kyle over an hour to fully wake up from the anesthesia and be able to support his head again.

What's worse it that we had to wait days for the results. The MRI came back negative, but the EKG showed signs of mild Arrhythmia. Kyle is now being referred to a Pediatric Cardiologist for further testing. See, there is a history of heart disease in both Gator's and my families, plus Gator has Wolf Parkinson White syndrome (he had surgery a couple of years ago that corrected it though). The specialist can not give Kyle any kind of medicine to slow him down, in order for him to learn, until he gets a clean bill of health....heart and head wise.

We have genetic testing on Tuesday and are suppose to get some form of diagnosis on March 8th from the specialists. Who knows, but I am ready to know exactly what we are dealing with so we can attack it head on.

Along those notes, after the MRI and EKG on 2-16-07 we took Kyle to Myrtle Beach for the weekend (after a trip to Wal-Mart for a much deserved toy). WE ALL NEEDED A BREAK! We had a great time.....just relaxing. Kyle had a blast at Ripley's Aquarium, swimming in the indoor pool & hot tubs, chasing waves on the beach and flying a kite for the first time. We also got to see my former youth director and very dear friend, Harry Tokunaga.

Thanks for all of your prayers and support! We love you!

Our Little Valentine

Boy how things have changed. I use to only see Valentine's Day as "gifts (jewelry) for me day". Of course that was before a husband and a chunky monkey! Now what my perfect Valentine's Day consisted of....starting the day off by giving kisses to the monkey, enjoying others get flowers and a little party at work, was having the monkey walk in with his daddy with ONE single red rose (and goodies from my mom - homemade truffles - I have the best mom!), Gator fixing supper (and cleaning up), watching Winthrop on TurnerSouth beat Charleston Southern, and seeing the pure look of joy on Kyle's face as he dug into his own little Valentine's Day cake! Not what I used to want for Valentine's Day........but MUCH, MUCH BETTER!

We hope you all had a wonderful Valentine's Day!

Rascal Flatts

You may recall me mentioning our favorite music group, Rascal Flatts in an earlier post. Well Gator and I had 5th row seats in Columbia Friday night (2-9-07)for their concert.......which was out of this world as usual! We are fan club and Flatt Dog Pound members with VIP ticket access and Meet & Greet opportunities. I was fast enough online to get my name on the list to go backstage Friday night, but Gator was not.......oh well!

Flatt Dog Pound members were asked to wear red t-shirts to the concert in Columbia decorated with Rascal Flatts.com and Flatt Dog Pound stuff. Of course we wore our red t-shirts! I had put a photo of RF with Kyle at a concert in Columbia October 2003 when he was 10 months old on the front of our shirts. {I had made him a onesie with "I was listening to Rascal Flatts before I was born" on the front and "Flatt Dog Pound" on the back. Gator had surprised me with fan club memberships for both of us and the meet and greet passes. You are allowed one M&G a year and one photograph and autograph per member at the M&G (which has now changed - no personalized autographs - just pre-printed ones). We chose to have one photo with all three of us and one with just Kyle. They signed Gator's cowboy hat and Kyle's onesie.}

Anyway, while I was backstage awaiting my turn for a M&G and photo-op, my shirt caught Gary's eye..........the lead singer for RF. He stopped the M&G and walked across the room to take a closer look......at the photograph of Kyle with them on my shirt. As he walked back, he joked to others in line to "take a look at that hair", meaning his 4 1/2 years ago. Of course the woman in front of me 'bout passed out because he walked over to look at my shirt. When it was my turn, Joe Don walked over to look at my shirt and asked "if that was our baby"? Well, of course Kyle was......just joking! I went on to explain that Kyle was 10 months old at the time of the photo and they recognized that it was the CMT tour. I told them that Kyle was now 4 and was being tested for autism. Gary took the recent photo of Kyle as I told them how much their music meant to us and that it was the only thing that would always calm Kyle down! (He knows them.........I even recorded them on the Grammys Sunday night and he knew them even though they were singing Eagles tunes!) They were stunned and caught their breath as I told them the story and they thanked me for telling them as they hugged me (okay.....eat your heart out). Anyway, as we were getting ready for the photo to be taken, Joe Don took the picture of Kyle from Gary and asked "if it was for him and could he keep it?"..........now do you think I am going to say no to a RF?!?!?!?!.........well, of course not. Now, I am also a realist and they may have just forgotten what I told them and Kyle's picture could have been thrown away, BUT nothing will take away the look I say in their eyes of amazement and wonder when I told them what they meant to Kyle!

So, when asked what are some of Kyle's favorite things........horses, airplanes, Disney movies and Rascal Flatts.........believe me he will one day M&G them too and hopefully tell them for himself what they mean to him. For now, "My Wish" for Kyle is that he grows happy, healthy, wise and someday will be able to tell everyone what his wishes and dreams are.

What Is Autism?

So what is AUTISM? "Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as Autism Spectrum Disorders (ASD). Today, 1 in 166 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.......Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders."

Facts & Stats
1 in 166 births(1)
1 to 1.5 million Americans(2)
Fastest-growing developmental disability
10 - 17 % annual growth
Growth comparison during the 1990s(3):
U.S. population increase: 13%
Disabilities increase: 16%
Autism increase: 172%
$90 billion annual cost(4)
90% of costs are in adult services(4)
Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention(4)
In 10 years, the annual cost will be $200-400 billion(5)

Kyle's pediatrician says that Autism merely means that his brain functions differently than ours does and that we have to find out which way that is. But don't we all think differently? If we didn't the world would be a very boring place. How can his be so different as to limit his normal means of communicating? This too we have to find out after the series of tests and evaluations we have in the upcoming weeks.....which include: occupational therapy evaluation, speech therapy sessions, genetic testing, MRI and EKG. He's 4 years old! Why should a 4 year old be going through this? Especially when it means putting him to sleep during the MRI and EKG (they will be done at the same time 2-16-07).

Of course, Kyle now has not only his favorite pediatrician, but also a Developmental-Behavioral Pediatric Specialist, Speech Therapist, ENT doctor, and soon to add: occupational therapist, genetics doctor and a 2nd Dev.-Beh. Ped. Specialist in Autism. Our heads are spinning with doctor's appointments and therapy sessions that Gator bought me a PDA to keep up with them all (and all of my training sessions and meetings with work). Guess it's a good thing that I had those 7 months of unemployment to relax, unwind, sleep late, play with Kyle, watch cartoons and soap operas, do nothing, and brush up on my research skills................looks like all were much needed to get me ready for our never ending road of dr. appts. See God knew I needed all that rest to prepare me for this long haul.

The other day I was amazed at a co-worker's response to our learning stage of Kyle's possible autism . She knew from the day her son was born that he had Downs Syndrome and could not imagine finding out 4 years later that something is wrong with her son. (He is now 4 and in Kyle's special needs pre-school class.) She can't believe it.......going with the typical stereotype you would think that Kyle's autism is nothing compared to the road ahead of them with DS.

Talk about getting it wrong. She has helped me realize what a blessing Kyle is and how our wish was granted by God to not let him grow up too fast. It is definitely true that God is in control of our lives and puts us where he knows we need to be for his-sake and our own. I never would have believed that moving back to Union would be a blessing to our family, but once again...God knows better than I do what is best for us.

Autism........we're not sure

The past month has been a blur of one doctor appointment after another.....most of which were for Kyle, but a couple were for me and the healing torn ligament in my right ankle and its lack of strength and of course my first mammogram (which wasn't so bad----so go have yours).

Anyway, we are still learning about Kyle's possible autism. Possible.........well, we still have many appointments and tests to go before a firm diagnosis will be made. We're in it for the long haul and I'm glad that a hasty decision is not being made---though I will be glad to know what we are dealing with.


As it turns out, there is a very broad spectrum of Autism disorders that range from very severe to very mild. Of course we are hoping for the mild end of the spectrum, but really just want to know one way or the other. It's so hard to look at this most perfect looking child----except for the clear evidence that he is a Sherbert----and wonder how their could be anything wrong with him. That is until you realize that he should be back-talking his parents and asking a million "why" questions. You never want to believe that your child has "special needs" because of the stereotypes. However, you also realize that you have been blessed with such a very special human being by God.

I think every parent never wants their infant to crawl, walk or talk. They want to hold them in their arms forever. Well guess what, parents of special needs children get their wish. You see we get to hold on to that infant a little longer.......though they do continue to grow and gain weight making it harder to lift to the changing table for a new diaper.

Special needs children have the biggest hearts too! Kyle gives the best hugs and kisses. He has to shake the hand of everyone he meets and has the best laugh.........you know when you have to break out the tickle monster to tickle him to death so you
won't really strangle him because he has gotten on your nerves.

Yes, Kyle still does all the annoying things a typical 4 year old would, without the normal communication skills.

Kyle has started speech therapy and will be evaluated next Wednesday for occupational therapy (sensory skills). He is also in a special needs pre-school class and we do what we can at home to assist in his therapy.........homework last week was to drink milkshakes and play with bubbles and whistles to work the mouth muscles for speech.


For now, its playtime in the 3 inches of snow we got today and then a few movies with the tickle monster. You know we really are the lucky ones....maybe we should be called special parents instead of Kyle a special needs child.