Monday, October 29, 2012

Memory Monday (Diagnoses Defined) 10/1/10 - 9

I thought it would be good idea to put a description with all of Jack's diagnoses.  I copied a small definition from Wikipedia and put the link after if anyone wants to read more into it.  Gotta love Wikipedia!!! 

Cerebral Palsy (CP) -  umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cortical Visual Impairment (CVI) - a form of visual impairment that is caused by a brain problem rather than an eye problem.  Most people with CVI are not totally blind.

Dysphagia - medical term for the symptom of difficulty in swallowing.

Gastrostomy tube (G-tube) - a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing.

Hypoxic Ischemic Encephalopathy (HIE) - occurs when the fetus is deprived of an adequate supply of oxygen.

Infantile Spasms (IS) (West Syndrome) - an uncommon to rare epileptic disorder in infants.

Laryngomalacia - a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.

Microcephaly - a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex.

Posted by Tracy at 3:27 PM 0 comments

Monday, October 22, 2012

Memory Monday (First Keto Snack) 10/1/10 - 8

Friday, October 1, 2010

It was only a small amount of apples and butter but he got it all down.  With the exception to any that got too much saliva with it, he would spit that back out at me.  I know why he makes that face, I tried them and they are bitter.  He's pretty happy now and relaxing in his chair. 

Posted by Tracy at 2:53 PM 2 comments

Labels: Feeding, Ketogenic

Friday, October 19, 2012


So I took a break.  A break from facebook, blogging even instagram.  I didn't really do it on purpose but I think I needed it.  I've also been pretty busy.  
Of course I've been chasing Sarah around everywhere.  She's climbing on everything.  She pushed a chair up to the counter and got in the kitchen drawer.  Oh boy to I have a curious little girl.  She had her 15 month check up earlier this month.  All went well.  She's on the petite side but the doctor said as long as she gains weight then she will be fine.  She walked up the stairs at the pediatricians office about 10 times and would have kept doing it if we hadn't left. 
Such a stink!
So independent

Her doctor is the same one that Jack saw.  When she first came in she acted like she recognized me but thought it was because of Sarah.  A little later she asked if I had other children and I reminded her of Jack and then she remembered everything.  We talked a little about what happened, she said she had been thinking about us and wondered if she would ever get to see me again.  It was difficult going back to her but also I felt comfort in knowing that we were on her mind.
I've started working again.  It feels good to get out there but I missed that little girl.  I had to get big hugs before I left. 
She gives the BEST hugs!

Since I'm working in Lexington I got to visit Jack's tree and the cemetery.  It was gorgeous both days. 
In front of Jack's tree at the Arboretum
My babies
I love the fall colors in the background
I saw a grief counselor for the first time.  I really feel like she will help me work through all of my thoughts and emotions.  I've had such a good experience with social workers in the past and I know that talking through things will really help me.  

Monday, October 8, 2012

Memory Monday (HE PASSED) 10/1/10 - 7

Friday, October 1, 2010

I knew he would but now we have the OK from the speech therapist and the dietician to start with small meals by mouth.  What that really means is that I can try to feed him through his tight little jaws.  His jaw has always been extremely tight and he never really liked anything to be in his mouth.  That was one of the  reasons we got the G-tube. 

The speech therapist that does the swallow study knows us really well now.  Suzanne and I discussed how many swallow studies he has had and came to the conclusion of 5.  We are also known by the radiology staff.  One of the techs came in just to see Jack.  On top of all the swallow studies, he has also had a VCUG, chest x-ray and to check his MIC-KEY placement the first time he got it. 
Give me apples!

So back to feeding him...I called the dietitian as soon as we left Wilford Hall to let her know that he passed and to get more recipes.  We decided on two 50 calorie snacks a day.  This is so exciting for me!  I know it will be A LOT of work but I'm ready for the challenge. 
Real men wear pink!
John, Speech Therapist, Jack and Radiologist.

Monday, October 1, 2012

Memory Monday (Dinner with the Osbornes) 9/30/10 - 6

Thursday, September 30, 2010
Tonight John, Jack and I had the pleasure of meeting Miss Caitlin.  We got to watch her play on her computer, show us how she uses her Dynavox and how cool her room was. I am so happy that Mary stopped us at Lowe's a month ago.  It's so nice to meet other families in a similar situation. 
I learned tonight that it's OK to use the help that has been given. (I'm going to call the nursing company soon to start using some of the respite hours that we were given.) And to never give up on Jack.  Caitlin can do so much and it's all because her parents never gave up on her! 
Then Jack got a little spoiled by Mary.  She was holding him just the right way and started singing to him.  He was a happy little boy!
Mary, Greg, Caitlin and April it was wonderful to meet you!
Posted by Tracy at 9:04 PM 0 comments