Opthalmologists Appointment

On Friday, Eva had her second vision screening.  Her first was when she was 6 months old.  We went because I am concerned with her depth perception.  Our appointment was at Riley's Children's Hospital.  We were scheduled to be there at nine and we were a few minutes early.  We waited to go back into the screening area for about twenty minutes.  When we had our own room, the resident doctor started looking at her eyes.  She was being very cooperative with him and letting him put that tiny flashlight in each eye.  He did not see any significant impairments.  He then stated that the final test is when they can dilate the eyes and wait about thirty minutes, then check them again.  I agreed and we gently forced her eyes to stay open as the drops went in.  She quickly contained her displeasure with a drink and a toy in the waiting area. 

To my entertainment, Eva looked very "different" with her eyes dilated.  I tried to get a picture but you can't really tell. 


After time was up, we were called back again and seen by another resident.  I was starting to think that there were no doctors.  Anyway, she checked Eva's eyes again and stated that she could not see any impairments. I inquired about her depth perception again.  I was asking because when she is walking and the surface of the floor changes textures, she hesitates and side steps forward.  She is also more cautious than normal to sit in her chair.  She usually goes to her side and feels into the chair after finally reaching to her seat.  I explained to the second resident that she has Koolens and that according to the fact sheet 1 in 3 children need glasses. I showed her the information packet and since Eva's picture is in it, she validated my diagnosis.  After she again checked her eyes, she asked me if Eva could wear 3-D glasses and be able to tell when colors or pictures look different.  Well, obviously I chuckled and said that it may be next year when she can do that.  I said her vocabulary was limited.  She advised me to have another examination next year.  So, we will continue to be proactive but until then, she will be glasses free. 

Toddler Days

I have been making some significant changes to Eva’s routine.  I feel that her development is becoming more remote to children her age.  She is starting to get out of the baby stage and having her own personality.  So, I figured if she was changing, so should her environment.  Plus, she will be going to school starting in August so I mentally need to be prepared for that as well. 

This week was busy, well busier than usual.  We decided to give Eva her big girl bed.  That’s right, no more crib.  She can now at her leisure get in and out of bed and having experience with this is always challenging and rewarding.  When she saw the finished product, all she could say was “Elmo” (which is the same word for Nemo and Elmo).  I only assumed that she liked her new room and after two days of work, I really like it too. 

 

So a few more things that Eva can do now – She can open her door and while she tries continuously, she repeats “ah-pah” until she is successful.  She also says that when the doorbell rings and when she wants to go outside and play, even if it is raining.  She can also let me know when she wants her diaper changed by coming up to me and making the sound like she is clearing her throat that she is stinky.  She can now jump with both feet off of the ground.  I know physical therapy initiated that but the trampoline, her bed and pillows help with that process all the time. 

We also went to the museum this week.  Eva is almost in a trance like state on the carrousel. I am recommended to go at least twice and of course after the second ride, she gives the more sign and her discouraging whimper/whine when rejected.  But as always, she gets over it very quickly with any distracted measure. 

 

 

 

Laundry Triumph

The video says it all.

 

The Big News!

So I know the suspense of my last post is brutal for all three people that read these posts... but here it is.

In February I had been contacted by a family member blessed with a child with Koolens.  He stated that he had found my blog and wanted to learn more about what to expect from his seven month old daughter.  After we talked on the telephone for over an hour, I assured him my availability for questions, concerns, or just an ear to lean on, so to say.  About two months goes by and he sends me an email wanting to thank me and insisted on sending a gift.  Like any other person, I rejected his kind gesture, but then he told me that the gift was not for me but for Eva.   He was going to send her an iPad! Sure enough, we got it from the UPS man about a week later. 

You know with the joy and sorrow, surprises and expectations I get from Eva, I would have never of thought that I would feel such happiness for her.  She doesn't even realize that she has this gift but I know when she uses it you can see the joy and concentration's stream-line drool.  As saying this, I can't elaborate enough how special this family is to us.  My anticipation to give back to others in the future will become my personal goal.  I hope that they realize how special they are not only to us, but for the families that will be assisted.  Your kindness will never be left unknown. 

***This post is most certainly dedicated to B,M,B,F,J & of course Aggie!

Three short videos

So I had to post these.  I just can't keep them to myself. 

These will make you 1. laugh, 2. say "ohhh!" and 3. smile.  You can pick which goes with which. 

Enjoy.  Oh by the way, some great news is in the future.  Check back soon!

 

 

Saturday Night Wild Adventure

What a great night we had tonight! 

We ventured to Marian University and enjoyed a great dinner in their Cafeteria.  After our share of dinner and ice cream, we left and went to the student center.  They had board games, a face painter, balloon artist, and live animals!  I was able to snap a "few" pictures of the girls.  Eva loves monkeys.  Monkeys on clothes, Curious George, looking at their pictures, just monkeys.  Well, they just so happen to have a monkey tonight.  She was not as excited as I thought she was going to be about seeing this monkey but she did have the courage to reach out to touch her tail.  Her name was Mendi.  She was a spunky little monkey that liked to bite at your hand if your touch was a surprise to her - at least that's what Victoria said. We also visited with a chinchilla named Chucky and a hairless rat.  The biggest wild animal that was there was a six year old female alligator.  This alligator seemed so surreal.  She was literally a scarf around the handlers shoulders.  She seemed not to be bothered by the 12+ people touching her at any given time.   It was pretty amazing.  The older girls continued watching Mendi and trying to get her on their arms while Eva went over with Dad and played with the corn hole game.  Out of everything, we feel that she liked it the best.  The slanted boards were super fun climbing up and taking that courageous step off of with out holding onto a finger or a rail!  I must agree with her though, picking up the bean bags and dropping them into the hole seems like a much easier winning strategy.  Then, Victoria decided to have the balloon artist makes a few souvenirs.  The Elmo balloon was a definite hit but we had to laugh at her taking the alien on and off her head.  Her hair was so full of static, it was standing on all ends! 

I must say, if they put on another event like this again, we will be there! 

I never know Subway had a mascot!

Updated Topics: Grants, Gathering, BCSC Eval

I can only say that a much needed post tonight is mandatory.  I have been preparing for so many different events that I have forgotten to keep updating myself on the progress.

First topic: Grants applied - I have sent the three applications March 1, 2013.  As of today, I have not yet heard any news.  On a much happier note, I must say that sometimes, paying it forward is a much greater gift in life than those who sit and watch.  My appreciation is lost in words.  Thank you Aggie.

Second Topic: Today I visited our venue for our Gathering in August.  I felt so at home "on the farm".  Our guide, Lynne, was so kind and generous that they are willing to let us use their facility at no charge!   I have also heard from two different suppliers that they will be donating items for us.   I have experience generosity to a degree that can be overwhelming.

Third Topic:  Our BCSC evaluation is tomorrow.  I have had to complete many surveys and questionnaires about Eva.  For one particular survey called the ABAS (Adaptive Behavior Assessment System II)  I have looked over the results and knowing how to statistically score these assessments, I was surprised.  She scored average in the categories of Leisure, Social, and Self-care.  She scored the lowest in Functional Pre-Academics, Community Use, Health and Safety, and Communication.  She scored the best in Motor skills which to me was surprising.  The average mean score is 50 and Eva's was 37.7.  I know that these questionnaires might have resulted differently if someone beside myself took the survey but I am not sure how much information they would have. 
The second survey was called the REEL-3 (Receptive-Expressive Emergent Language Test).  This booklet asks questions regarding language ability.  It is categorized by age and I was shown to only answer the questions within her age group being 25-36 months.  After I started this survey, most of my answers were "NO" so I decided to start the survey from the 7-12 month stage where I could circle some "Yes" answers.  Her Expressive answers were much lower than receptive, which I assumed would happen in all age group categories.  I can related to this with my usage for Spanish.  I can mostly understand what your saying to me as long as you speak slowly but unfortunately, I most likely can not answer you in Spanish.  I feel Eva has the same language capability.  She can understand simple commands, questions, or requests.  She just can not answer your questions, comments or requests unless it is a yes/no question.  She can just show action with your request - example "go get me your shoes", or "where's your cup?" and she will simply go get the items.  Her Expressive Language in all age categories scored 44% where her receptive language scored 80%.  In her age group she scored 18% and 53%.  I am interested to see what our evaluators talk about tomorrow.