IDI Update

Had a visit yesterday with our IDI dr. I had given him the spreadsheet that I had made for Eva's daily health.  He decided to put her on a daily antibiotic.  I am going to pick it up today.  I can't recall the name of it but I will post it soon. 

Ear Tube

We were walking into the Y this morning and I noticed that Eva's hair was sticking to her face close to her left ear.  Looking at her hair and ear area, I then saw a very small bluish-green speck in her outer ear area.  That was her tube!  All that sticky stuff was/is wax draining.  Gross.  Called ENT dr and awaiting call back.  Not sure what I can do but keep her face and ear clean.  Hopefully the reaccuring ear infections will not return. 
Looking back though, her tubes were put in 2/13/12.  I thought they would last longer. 

Stairway to Heaven, I mean Museum

I decided to take the little ones to the Museum today.  Eva still has her runny nose but I am not going to keep her in a bubble so off we went.  When we got there around ten, there was an exhibit that was specifically for kids under five. I was sold.  We went into the area and they were in heaven.  Abigail went from sand to pretend water play to cooking in the kitchen then back again.  There was an area in the middle of the room geared for children up to 24 months.  I knew Eva was older but I didn't think  anyone would ask for an id. In this area, there were mirrors on the surrounding walls, vinyl shaped blocks and climbing toys, balls, and other baby toys.  She was grunting and pointing at all the toys but she really enjoyed giving kisses - to herself. 

After we left that area, she walked to a birdhouse exhibit.  This was more pretend play costumes and there actually was a birdhouse but it could hold up to 4 children in it.  There were six steps to get to the house and a metal slippery slide to get down.  Eva loved this, well, I assumed she did because she went up and down, up and down, then teased at the slide but went back down on the steps.  She really enjoyed working with those stairs.  A matter of fact, she only ventured down the slide once.  The height of each step and railing was nearly perfect for toddler legs.
After a little over an hour in this area, I decided to take them up to the carousel.  I figured at least Abigail would enjoy it because I remember when we were here last time, Eva was not as engaged as I thought she would have been with a massive pink horse going up and down to loud organ piano music.  This time, when the ride was over, she signed more, and then when we got off the ride, she turned back around to go through the exit to get that horse again.  It was to cute.
I then diverted her attention away from the horses and to a pretend play ice cream parlor, tree house and a play house.  Abigail loves the parlor and serves all who sit at her table.  Before she starts her job, she asked my assistance for getting her apron on.  She takes ice cream, coffee, or tea orders.  While all this was going on, I looked at Eva and guess what she was playing on again - stairs!  Unbelievable.   Well, good thing she has PT today.  I will let Lenore know that she had plenty of stair practice this morning. 
When we got home around one, she was hungry and seemed tired.  I gave her a quick lunch and put her to bed.  Abigail and I couldn't believe that she was still awake at two and in her bed talking.  She finally gave it up. 

An update on additional speech therapy - St. V's called to add another therapy session on Mondays every week.  We have to drive to their location.  Lucky for us it is in Brownsburg. 

Official Re-Naming

After reading many different comments through facebook, I have found out from differnet families that Eva is now diagnosed with Koolen Syndrome.  Thats right, no more C17q21.31 Microdeletion Syndrome.  I was getting used to telling others and them saying "huh?".  Now  I am sure that the comment will be more like, "I have never heard of that." 

Koolen Sydrome was named after Dr. DA Koolen, Genetic doctor that has his research laboratory at the Radboud University Nijmegen, Netherlands.  It is the exact same diagnosis just an easier name.

This  link is not very reader friendly unless you are a scientist and understand the lingo:

http://www.omim.org/entry/610443?search=17q21&highlight=17q21

Staph - Just a Scare

So I decided to go to our family doctor yesterday.  Thank goodness I did.  She stated that Eva has the remnants of hand, foot, mouth and not Staph.  I threw away her medicine that our Urgent Care Dr prescribed.  Since it is HFM, it is considered viral and we all know what that means - no medicine to treat.  We are assuming that her fever from last Tuesday was the start of this and since the bumps on her hands are going away rather quickly now, presumably, it should all be gone by the weekend. 

I guess her turning two was a good think.  Her major sicknesses are becoming minor and she has yet to have a seizure since April.  Although we are still getting on some type of antibiotic about every three weeks, the illnesses are not nearly as serious as they were a year ago.  (Knock Knock Knock on wood) 

Two Week Update - Staph

I have to have a disclaimer to this post.  It may seem to be to visual and maybe to informative but I need to remember that this is a journal for our Peanut so that we can refer back to her past. 

Well, it has been 5 days and Eva did not get rid of her cold.  Since she has been taking the script, I can only say that she has been getting worse.  Her nose is crusting up and occasionly has a bloody streamline in the mucus.  She also has bumps around the bottom lip, on tops and palms of her hands and in her bottom anal area.  I decided to not wait until Tuesday to take her to the Peds so we went tonight to Urgent Care.  The Dr. on call said that she has a staff virus.  Seriously? a Staff virus.  Well, I did some research and Staph or a flesh-eating infections is defineitly scary.  I really don't need nor do I want this virus sticking around so I pulled this up for reference : (www.webmd.com)

What Are the Symptoms of a Staph Infection?

Staph cellulitis usually begins as a small area of tenderness, swelling, and redness. Sometimes it begins with an open sore. Other times, there is no break in the skin at all -- and it's anyone's guess where the bacteria came from.
The signs of cellulitis are those of any inflammation -- redness, warmth, swelling, and pain. Any skin sore or ulcer that has these signs may be developing cellulitis. If the staph infection spreads, the person may develop a fever, sometimes with chills and sweats, as well as swelling in the area.

Can Staph Infections Be Prevented?

You can take steps to help prevent staph infections. Any time you have a cut or skin breakdown, wash it with soap and water, keep it clean and dry, and keep it covered. A couple of recent outbreaks among football players began when one team member had a boil and the infection was spread to other team members.
A staph infection is contagious if the wound is weeping or draining and if people then share towels or other items that are contaminated. Wearing foot coverings in locker rooms and other commonly used areas can help prevent contamination.
If the sore becomes unusually painful or red, get prompt medical attention. If red lines develop, that's a sign the infection is spreading and needs immediate medical attention.


The Dr. gave us a script for sulfamethoxazole which is a stronger bacterial infection anitbiotic.  I will monitor her more cautiously and take her back to see our normal Peds on Tuesday. 
Sidenote funny:
The other day,  I was watching her play on the floor with a piece of paper.  I wanted to share but it has been - well - busy.  If your not familiar with hypotonia, aka extreme flexibility, here is an example:  She can literally place both feet next to her ears and continue to grasps her hands together.  Amazing.  Look out Fab Five!