10 April 2010

Chandler's journey part 1

I know I have been posting on Facebook all about the doctors appointments and evaluations and most don't know all the details so I thought I'd get this written out. He's being evaluated for entry into Kindergarten next year. He currently has an IFSP with Beaverton ESD, and now we are working on switching it to an IEP for Kindergarten next year. With all the evaluations we've found out he's got some other issues besides the speech delay.

  • He's physically behind (evaluated to be at about 22-40 months), he has poor balance, nervous to walk up stairs or down, doesn't run properly, and doesn't jump on 1 leg.
  • He has hyperactive reflexes on his legs, where you hit them, and they bounce more than 1 time (about 6 on some spots), and they shouldn't do that. He even had one spot where the opposite leg's spot moved, not right.
"that the reflex is hyperactive and that there is clonus present. Clonus is a repetitive, usually rhythmic, and variably sustained reflex response elicited by manually stretching the tendon. This clonus may be sustained as long as the tendon is manually stretched or may stop after up to a few beats despite continued stretch of the tendon. In this case it is useful to note how many beats are present."

  • He's always been chronically constipated since he was born. There was discussion he had Hershprung's Disease (where part of the Colon doesn't have the nerve cells to tell him it's time to poo. Surgery fixes it easily).
  • Then his Apraxia of Speech shows that there is a neurological component to his body that's just not working in sync.

After seeing a PT, Developmental Pedi, eye doctor, audiologist, speech language path, and I spoke with an awesome Pedi Urologist on the phone (free!), we decided to see a Neurologist.

He's ordered the MRI to see if he has a tethered spinal cord or if he's got something going on in his lower back that could be causing these issues. The PT thinks she can get him to where he should be by September (YAY!) but we don't want to waste our PT visits if there is an underlying cause.

So that's about it. It's taken about 4 months to get to this point. If it's a tethered cord, we'll see the Neurosurgeon at Emanuel and she will fix his cord. From what I've read, she's excellent!

More updates after we get the blood work results on the Fragile X Syndrome (doubt, but easy blood test), and then Monday's MRI at the hospital (he'll be under for it). Thanks for the prayers & good thoughts! It all helps!

21 January 2010


A new blog address, and a first post of the year! So we are 3 weeks into 2010 and life is returning back to normal as much as it was in November. Rob's back in school, so is Chandler. Major difference between November and January is, the amount of toys in the family room and the fact that Lincoln is walking. But with a new year (thank God 2009 is OVER, what an awful year!) reflection is a part of the tradition... Instead of reflecting on 2009, I look forward.

For 2010, I have a few goals, not resolutions, but goals.
1. Stick to the diet & gym.
They won't hurt you, only make you stronger, literally.
2. Keep working on reading the Bible, daily!
It will make you stronger, but in faith and love for God.

I have kept it simple. Those are the goals. We'll see where we are in 49 weeks, on how I did. :)

20 January 2010

Who is the Random Mommy?

I am Melissa. I am in my early 30's and live in the Pacific Northwest with my dear husband, Rob, and two cute boys, Chandler (6) and Lincoln (2.5).

I love to knit, crochet, sew, take photos, watch sports (hate soccer), read books (Twilight, Harry Potter and Millennium Series are the recent favorites), politics (hard core Republican/a "crazy" Tea Party Member).

I love to sing, and I do semi-professionally in Portland's Singing Christmas Tree. I've done it 9 years and in 2011, it will be my 10th season! I love it and the fellowship it brings. I've met some amazing people in the TREE choir. They have helped me through many trials in my life (especially when my Dad passed away in 2006). I also love to teach Sunday School for Chandler's age at our Church (Lutheran), and am active there.

Rob is in his 3rd year of school for Electronic Engineering Technology/Electrical Engineering. He goes to school at night and also works full time for my family's natural food brokerage. I work as a Webmaster and work with Retail level promotions. It's fun and works well with the mommy schedule.

Chandler had surgery on June 7, 2010 for a Tethered Spinal Cord at Legacy Emanuel Children's Hospital. His surgeon, Dr. Monica Wheby, was able to cut the tether and he was able to go home the next day. As a form of physical therapy he is in Taekwondo at Family Kicks Martial Arts. When he began in July, about 1 month post-op, he had awful balance, his gait was akward, he couldn't bunny hop. Now 6+months later, his range of motion in his legs has improved dramatically, he can bunny hop and jump, he can balance on 1 leg for 5+seconds, and his run is faster and less spastic looking. Master Null has really been a true blessing for Chandler and our family!

Lincoln is very different from Chandler (don't they always say that?), and is very active. He climbs up things, is much more rougher, has a thick skull (yes, we do know this), and is a lover! He's a late talker, just like big brother, and is in speech therapy as well. He's not nearly as severe as Chandler (who has Apraxia of Speech), but we started ST early with Linc, just in case.

For Me, this blog began as random musings, and such of the family, but it will take a new meaning as a way for me to loose the 150 lb that I need to loose. Doing Weight Watchers and exercising are the ways I am tackling the goal. Starting weight: 331.2 on January 3, 2011. First goal is to loose 60 by Lincoln's 3rd birthday at the end of June. It's aggressive, but it needs to happen.

Thanks for stopping by my blog, please follow my journey, it will help keep me accountable! :)