Thursday, October 31, 2013
I wanted to update on my stepdad, Allen.
He has finished his radiation treatments for now and is waiting for a scan that will be done next week, November 6. He has been very sick. He has been falling a lot and the doctors say it is because when he stands, his blood pressure is dropping drastically. About a week and a half ago, Allen fell in the bathroom at their house. He fell between the wall and the toilet and Mom couldn't get him up. She had to call 911. :( They took him to the emergency room in the ambulance and gave him some fluids at the hospital. When he fell, he got some kind of nerve damage and now has no feeling in his right arm. He can't use it or feel it at all. They don't know if it is permanent or just temporary, but so far, the feeling has not returned.
This has been very hard for him, because as you can imagine, he has to depend on other people to help him. He is right-handed, so this was a big set-back. He has a hard time feeding himself and even going to the restroom seeing as it's hard to dress and undress with one hand.
We saw Allen recently and I have to admit, he looks bad. He has lost a lot of weight and is obviously exhausted. Please keep him in your prayers. He needs prayers for his health, but also for his spirit. I can imagine cancer would get you down and on top of that, he has the nerve injury that is requiring him to be very dependent. Thank you in advance.
Tuesday, October 29, 2013
First of all, yesterday was Colt's third birthday! On one hand, I am stunned that it has been three years since he was born. On the other, BOY, have we been through a lot in those three years. Wow. Colt is a stubborn, determined, brilliant, and loving little boy. We are so very blessed to have him in our lives. On Saturday, we had a big party for him at my dad and Judy's house. We had a hayride and fire, with chili, hot dogs, and s'mores. I think everyone had a good time. I know we did.
Yesterday, Ryan took the day off and we took Colt for a big day out. We started with his yearly check-up. He weighed in at a whopping 43 lbs and was 40 1/2 inches tall. He used to be a chunky little man, but now, he's thinned up a lot as he's gotten taller. He is still solid as a rock. I love that...until I have to carry him up the stairs. ;) Anyway, after the doctor, we went to the Tennessee Aquarium and out for pizza at Mellow Mushroom. We went home for a nap, then back out for dinner at Shogun. Colt loves that place. He loves the salad with ginger dressing and the hibachi vegetables. After dinner, we went to Petco and bought Colt his very own fish to have in his room at home. He named them Gil and Molly, after his new favorite show Bubble Guppies. We had a wonderful day together. :)
Okay, now for some of the updates. Colt aged out of our Early Intervention program - Babies Can't Wait. The program only services children ages three and under. He should have, without a doubt, qualified for the Special Education Pre-K that I have mentioned before. HOWEVER, he didn't. It was VERY, VERY upsetting because he should have qualified. It left me feeling helpless and I shed many tears over that situation. Basically, they told me that his cognitive ability was too high. I know that is a huge blessing, really I do. I was depending on that for help though, and when it was denied, I was devastated. They did give Colt an IEP for speech therapy through the school system, but nothing more. He will begin speech therapy at Cherokee Ridge Elementary tomorrow and will go twice a week from now on. They suggested we continue Physical Therapy through a private therapist on our own, with our own money. Gee, thanks. Let me describe this meeting for you... There was a big round table with me and five others - two speech therapists, an occupational therapist, a special education teacher, and a school psychologist. I had to sit there for an hour and twenty minutes listening to them analyze every single part of my son - what he couldn't do, wouldn't do, shouldn't do, and the few things he did well. It was one of the hardest things I have ever had to endure. I wanted to jump up and defend him, but obviously, I can't do that. I sat through all of that before they told me he didn't qualify. Ugh.
One big thing they did talk to me about is the fact that they all unanimously agreed that Colt has Sensory Processing Disorder. Many times, it can be misdiagnosed as ADHD or it can occur along with ADHD. Our old speech therapist, Ashley, mentioned that she thought he may be ADHD before, however, he was too young to really say. When I came back and did a little research, I honestly think they are right. He definitely doesn't fit all of the different types, but I do feel that he is very "Sensory-Seeking." I listed some below so you kind of know what I mean.
__ stomps feet when walking
_X_ kicks his/her feet on floor or chair while sitting at desk/table
__ bites or sucks on fingers and/or frequently cracks his/her knuckles
_X_ loves to be tightly wrapped in many or weighted blankets, especially at bedtime
__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible
_X_ loves/seeks out "squishing" activities
_X_ enjoys bear hugs
_X_ excessive banging on/with toys and objects
_X_ loves "roughhousing" and tackling/wrestling games
_X_ frequently falls on floor intentionally
__ would jump on a trampoline for hours on end
__ grinds his/her teeth throughout the day
_X_ loves pushing/pulling/dragging objects
_X_ loves jumping off furniture or from high places
_X_ frequently hits, bumps or pushes other children (This is what he got in trouble for at school!)
_X_ chews on pens, straws, shirt sleeves etc. (shirt collar!)
_X_high levels of energy
_X_ dumping toy bins rummaging through them aimlessly
_X_ loves loud noises, TV or music volume, crowds and places with lots of action (Football games!)
I definitely think we are heading in the right direction here, but I am afraid to pursue a diagnosis. I am not ready for a label at this age, but I do want to try to help him before it gets bad, if this is indeed what's going on. I think, without a doubt, it is more than just a "typical boy, he'll grow out of it" thing. Maybe we can just look into things we can try to do at home to help, so if anyone has any suggestions, I am all ears.
Anyway, all of this left us with no plan for preschool or places for social interaction, aside from your usual playground/playdate type thing. A friend of my sister, Amie, suggested we look into Siskin Children's Institute. It is a really amazing place. There is almost always a waiting list, but this time, there is an opening in Colt's age class. We toured it last week and loved everything about it. It has happened so easily and so quickly that we are wondering if this isn't where he's supposed to be anyway. We are pursuing this hard and hope to be able to start him there in the next week or two. I couldn't be happier.
Also, Colt has had yet another double ear infection/sinus infection. He is on antibiotics for the third time in 6 weeks. We saw his ENT again recently. He decided to do a second set of tubes and to take his adenoids out. That will be done next week, November 6. I feel like we have done nothing but go to different doctors or therapists this month. This is my calendar for the month:
Friday, October 4, 2013
Well, it has been an eventful couple of days.
First of all, we got the call from the geneticist this afternoon. Colt's Soto's Syndrome test was negative. We are not going to test anymore at this time. We don't want him to be a lab experiment. He has been through too much in his short life. He deserves a break.
Yesterday, Colt had a TERRIBLE day at his Mother's Day Out program and was sent home early. He went to his Mimi's house and was a bit of a monster there too. I was pretty upset about it. Not at his school, just the fact that he had acted that way. We have had lots of problems and bad moments, but yesterday was awful.
When he got up this morning, he had LOTS of green snot (gross, sorry) and the beginnings of That Cough that always turns into bronchitis. I made him a doctor's appointment for today. He has his second double ear infection/sinus infection in less than a month. While there, I had a wonderful conversation with Dr. Friddell. I asked him about Colt's recent behavior. *Cilla, this is for you too!* He said that children like Colt, that have these setbacks and delays often have a harder time than "normal" (what is that anyway?) kids. He assured me that his behavior is stemming from frustration, rather than a behavioral problem. He said Colt can absolutely tell that he is different and sees the other children being able to ask for what they want and he can't do that, which causes frustration. He then acts out, gets loud, gets mean, whatever. Dr. Friddell explained it this way: Kids like Colt that have delays, particularly communication delays, can behave one of two ways. They can reach out, wanting to be noticed and understood by getting out of hand a bit, or they can withdraw into themselves and almost shut down. We want the first one. His stubbornness is beneficial here, though it is difficult to know how to handle it. Dr. Friddell assured me that he would catch up and get over this, but until then, we absolutely continue to punish this unruly behavior letting him know it is okay to be frustrated, but it cannot be manifested in that manner.
So. I feel loads better in some ways and totally beat down in others, knowing that Colt is frustrated because he understands he is different. I hope we can learn how to show him that being different is a blessing sometimes. I am absolutely thankful that Colt is stubborn, determined, and acts out instead of giving up and shutting down.
Please God, let my boy keep those qualities for the rest of his precious life.