Thursday, December 3, 2009
KOMO 4's Miracle Season Telethon for Seattle Children's
KOMO's Miracle Season Telethon is an annual holiday TV special highlighting the stories of Seattle Children's hospital patients and seasonal entertainment. Viewers are encouraged to call in a pledge.
Saturday, December 12, 7-8 pm on KOMO TV 4 Seattle
Wednesday, December 2, 2009
Cole's Otolaryngology Visit
We discussed our plan for follow-up in Speech early next year and plan for a possible swallow study as we suspect Cole's palate is short and may need repair with critical help from is neurosurgeon due to risky encephalocele, if needed. We suspect this as occasionally fluid from his drinks comes out his nose and now that he's trying harder to make sounds, he still can only make vowel and "m" sounds.
We have a small list of planned evaluations as well for next spring including BAER hearing test, head MRI per neuro and his Otolaryngologist may want to explore Cole's palate more thoroughly.
The good news is Cole's ear drums look good & healthy and no site of ear tubes so they must have fallen out (and no fluid present). Since Cole still has a sinus infection, his doctor recommended and gave us a recipe for making an antibiotic saline nasal spray to help and also decrease Cole's risk of Meningitis.
Friday, November 27, 2009
Thanksgiving
Tuesday, November 24, 2009
Cole's Post Recovery Echocardiogram
Monday, November 23, 2009
Church, Preschool & Cardiology
Instead of going into further details, I just want to share the verses with you (just click on the link) and if you follow us, you know how this all applies so well to our life! We are looking forward to this Thanksgiving with SO much to be thankful for this year! God Bless!
Hebrews 12:3-11 Cole
Lamentations 3:32-33 Cole & his heart surgery
Proverbs 1:20-33 Adoption
Acts 5:40-42
Philippians 4:12-13 We wouldn't change a thing about our life! :)
Psalm 34
2 Corinthians 4:17
1 Peter 4:12-19
Revelation 20
Today was Cole's first day back to preschool since school ended last spring! He had a great time and was happy & proud when I picked him up. :) Tomorrow after preschool he has an Echocardiogram at Swedish and if all looks good (as expected) then we can move forward with his growth hormone therapy! The test will be a good baseline as there is a chance that the GH therapy may thicken the walls of his heart thus his heart will be monitored regularly while on GH therapy until age 18. If there are any unsafe side effects then we will re-evaluate the situation and may have to stop-we'll be praying that won't ever be an issue.
I hope you all have a wonderful THANKSGIVING!!!
Love,
The Cameron Family
Tuesday, November 17, 2009
Adoption: Step One!
Thursday, November 12, 2009
Cole's Neurosurgery Clinic Appt
He doesn't have any concerns with Cole starting GH therapy as there's a 50/50 chance it may strengthen the tissue of the encephalocele (good) or it could cause problems. The Dr. is not sure if the encephalocele is the cause of Cole's GH deficiency or not but says he wouldn't be surprised if he has other hormone deficiencies found later as the encephalocele is in the pituitary part of his brain.
We also asked if the encephalocele plays a role in Cole's speech delay. Since he's not an ENT doctor, he cannot give us a certain answer but said from the CT his palate looks normal and doesn't show any serious abnormalities. But the CT can't show us if the palate functions properly. Cole's ENT would need to order a swallow study. We have an appointment to see Cole's Otolaryngologist next month as a follow-up on his ear tubes, hearing and we will discuss speech & language and his palate then.
His neurosurgeon would like to have another head MRI done so we will wait until next spring and try to coordinate it with a BAER and any other tests or evaluations that Cole's other specialists may want.
Wednesday, November 4, 2009
Parent Education Class for Speech & Language Development Part 1
For more information on these classes, visit an earlier post: RiteCare of Washington.
First, we listened to a couple foreign language audios, the first was fast so it was hard to understand. The second was slower and repetitive so it was easier. Then we compared why the second one was easier and listed what made it easier to understand:
- slower paced
- clear word boundaries
- slower rhythm
- repetition (of words)
- inflection of context
- and gesturing (once we watched video)
We discussed ways to "model" speech; talk, talk, talk. Talk about what your children are doing as it gives them words for things and actions they see & do. It gives your children a model for their own speech & language.
Self-Talk; talk out loud about what you are doing or thinking. Name everything. Have a conversation with your self, narrating your activity & steps. Use single words and short sentences.
Parallel-Talk; talk about what is happening to the child. Your words describe what they are doing, seeing, hearing or feeling. Say what you want the child to say. Be the "bubble" over their head. Model what they should say if they could. If the child is reaching for a toy, you say "want that" or "gimme". If they hand you their cup say "milk", "more" or "more milk". If they point to something say "look" or name the object.
Children need to hear a word of phrase spoken many times (some 10 times others 200 times) before they will be able to use it. Repeat, Repeat, Repeat, Repeat. While dressing; "shirt OFF", "pant OFF", "shoe OFF" or "sock OFF".
Language is learned within the natural conversations of daily living, and their are many opportunities for interaction. Remember S.O.S.-Short, Often, Simple and have fun!
Saying what our child would say if they could say it lets them know we understand, and gives them a language model that will help them learn.
Gesture or sign: gesture is an important stage of learning to talk. It's a bridge to spoken language. When parents use gesture paired with verbal language they can impact their child's vocabulary development.
The use of gestures develops in a predictable sequence:
- Gesture used alone-child raises arms to be picked up
- Gesture + word-raises arms and says "up"
- Gesture + word-raises arms and says "daddy"
- word combinations-"up daddy" or "daddy up"
Gestures help us understand language by giving information (shaking head no), show emotion (open arms to welcome a child), convey information (smile + nodding) and are a way of expressing oneself before being able to talk.
We help our child put a word to the action when we:
- are consistent
- face to face with our child
- say the word and make the gesture at the same time
With daily routines we can add information! Describe what is happening!
Here are some examples of our daily routines and words I used with Cole:
- eating & cooking "mmm, mmm, mmm" & "yum, yum, yum"
- riding in the car or playing with cars "go, go, go"
- dressing "off, off, off" & "on, on, on"
- doing laundry "in, in, in" & "out, out, out"
- playing "choo choo, woo woo, ooo ooo"
Use the same words and actions each time, repeat the word every time you do the action, over and over again, watch your child to see what they like best and use your voice and facial expression to make parts of the routine exciting.
Communicative words with limited consonant placement for kiddos like Cole who can say just a few or one word(s):
- uh uh
- oh oh
- uh huh
- oo oo
- ooh!
- woo woo
- eek
- owie
- wow
- whew
- whoa
- hi
- hey
- hey you
- ho ho
- ha ha
- yeah
- you
- yoo hoo
- ya hoo
- wa hoo
- yee ha
- woo hoo
- ah ha
- oh
- um or yum
- ew!
- one
- nah nah
Choose some Power Words that are Practical, Purposeful and Useful to work into your daily routines.
So after just the first day of my class, I prepared to practice what I learned the next morning! While making breakfast I kept repeating "mmm" slowly and with intonation and soon Cole did too! Then I said "Yum!" a few times in a row slowly and so did he, even though it comes out "Mum!" :) Yeah! progress already and so I went on with similar words to our activities throughout our day and he made many attempts to words, was more tuned in to our interactions and was so much more confident in himself!!! YUM is still our biggest accomplishment, but that's better than nothing. The rest of our week was similar. I am looking forward to Cole's speech developments over the next 6 weeks!
"Yee Ha!"
Some information was cited from It Takes Two To Talk (Manolson, 1992)





