Welcomed Warmer Weather

 

 

Check out that height!

I can not believe how fast summer is approaching us.  If we can't play outside for a significant amount of time throughout the day, whether it is taking a walk, going to the trampoline, going to the neighborhood park, or what ever our hearts desires, Eva get emotionally upset.  She cries when we come inside from playing, even if it was two hours of playing!  Our wonderful physical therapist even went on the trampoline with her.  She was so impressed how well Eva can jump on her own but it was so windy, it would literally blow her over. 

We also have officially opened the pool.  It was 78 degrees and we had just finished our different sports practices.  They were begging me to get in.  Obviously, they went swimming regardless on our suggestion that it would be to cold since it was 20 mph winds and only 76 degrees outside.  Needless to say, they lasted an impressive 20 minutes and kept smiles on their faces through their teeth chattering.  Eva had some curiosity with the water.  She was on the first step on her own but refused to release her "death grip" on my index fingers.  She then started going for the second step and seemed surprised by the temperature on her belly.  She didn't last long enough to step back up.  She was definitely done with the second step.  I have a strong feeling that this summer, Eva will be using it almost as much as her sisters.  Bring on the Heat!!! We are ready ;)

We're taking off!

It is official.  We are in the starting processes for a Non for Profit organization!  I can not be any more passionate and extremely excited on the opportunities for all the families affected by Koolen deVries Syndrome.  I am pleased be the responses by families and seeing their support makes my efforts and the other three Board members efforts appreciated.  I am also seeing a pouring amount of volunteer assistance within the organization when it  becomes official.

Again, as I have posted this on facebook and through email, here is the link. 

Supporting Families with Koolen Syndrome

 

IDI update, Open House & Springtime Cold

On Wednesday, we attended an Open House through our Speech Therapist from St. Vincent's.  It was at their main facility which I might say was quite nice.  All of the family was invited to attend and it seems to me that her sisters enjoyed their time more than Eva did.  There was face painting, balloon making, racecar racing, coloring, a great obstacle course, and they even had a therapy dog.  Oh did I forget to mention the raffle, cookies, juice and snacks!  They had invited every family within their network and only about 15 families were there.  They had supplies for at least a hundred.  Needless to say, it was not busy and we were spoiled with favors and snacks.  The kids also got medals for completion for all the rooms.  It was done very well and obviously we had a great time. 
On Friday, we had our quarterly appointment with our IDI.  He looked at the blood work results and was taken back.  At first he asked me how our winter went and I stated that Eva was only sick with a cold once.  He was surprised by that and then informed me that her numbers were much lower that the previous results.  Her IgG was 318 where last visit it was in the 400's. 
http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2
As stated in the above website, it clearly shows that in rare cases, people are born with low counts and their immune system will be affected by it.  He recommended us to return in two months rather than three.  I was good with that. 
Finally, Eva has a bad spring cold.  It has turned into a cough and she is more irritable than usual.  I was very aggressive by seeing our pediatrician quickly due to her visit from the IDI.  Crossing fingers she just keeps the cold and we don't take a turn down a much more serious road. 

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.