Hearing Test Results and NYC

It has been too long since I have posted anything!  Summer vacation for the older kids is here and I had gone away to the east coast for a visit.  Lets get an update on little Eva.  On Thursday she had another hearing test at IDS.  This test ran much smoother than the others.  She did not need to be asleep but her almost two year old attention span got the best of everyone.  They did testing solely in the sound booth.  It was a basic test as before, sounds coming from either corner, stuffed animals moving in their Plexiglas cases, an assistant trying to keep her attention with random toys sitting in front of us. The ultimate result, she passed again.  The audiologist did ask if she could visit with Eva again in six months thinking that her focusing on a task, or in this case, a test would be more developed.
I am planning on going to the New York area for a Chromosome 17 gathering.  There will be other families there that are faced daily with this particular abnormality. I know that it will be a great experience for Eva and I and the information that I can gather from other families.   I can only imagine the excitement, knowledge, sadness, fear, and many other emotions that I can endure in such a small amount of time.  Excitement: meeting other families that can relate to our family; Knowledge: the best information can come from those who have already experienced our known (thankfully Eva will be one of the youngest C17 members); and Sadness: the word empathy comes to mind and so much more; Fear: of still not knowing answers that all parents want for their child, (can they become an independent adult?).

Bounce Bounce...

Today was a good day.  I must mention that Eva's fingers are peeling like snakeskin.  The new skin is rose red under the white, hard crusted dead skin falling off. It's gross and when we attempt to pinch it off with nail clippers, she fights, pulls her hands away, then whines.  So I just wait until she climbs up me for balance to stand and quickly snatch the loose skin off.  Blechch.

Back to today - we to on a trip to the zoo.  A quick one I may add.  Just visited our tigers, gibbons, restroom, elephants, cheetahs, rhinos, baboons, giraffes, ducks, turtles, and of course, the playground.  Then we found a curb-side spot next to the Chase Tower and took a stroll to visit both Pappa's.  Then, we went to lunch.  After we raced home and took a nap, she had PT.  Our therapist was thrilled with the new shoes and lift but did mention that since last week it seemed that she may have lost weight from being sick.  We were working with her to take few steps again.  She did take two independent steps which is progress.
After therapy, we went off to a few stores for weekend necessities and picked up a pizza for dinner.  After our smoke alarms were finally relaxed from the drippings of savory garlic oil on the base of our oven, we enjoyed our dinner.  Then we all went outside for some backyard play.  Well, I think the video says it all.

Gianotti Crosti Update

Thanks to a great neighbor, I can finally go back to posting on the ole journal.  I have some catching up to do.  Last I posted was on Friday.  We had a visit with our pediatrician and gave us a title to her bumps.  On Saturday, I can only assume that by the way she was acting, these bumps were painful.  If she was not on my lap or physically an arms length away from me, she would whine.  At one point during the morning, I did put in a favorite movie and she sat on the floor in one area, immobile, for over two hours.  I could tell that moving, crawling, sit-to-standing, or side-stepping was just painful.  I continued to give her Tylenol for pain.  On Sunday, we were again quarantined at home.  In the morning hours, she was again clingy.  I then decided that these now open sores needed to been seen by the doctor again.  It just didn't seem right not have any cream or medication for relief.  She just seemed miserable.  After her nap I got her up and she was a different child.  Her coloring was coming back to "baby pink"and her attitude and demeanor were more independent.  To say the least, I was a bit relieved as well.
On Monday, I noticed the bumps were still there but some were starting to almost peel off.  You could visibly see a scar starting to form.  We did not visit the doctor because she was acting more like herself.  She was very curious, into every cabinet in the kitchen, and pulling Abigail's hair when reachable.  On Tuesday, her nose was looking better because over the weekend the bumps had almost swollen her nostrils shut.  These scars/scabs were wiped away and her nose was looking more normal again.  It did help that were went to soccer practice and the cool breeze let all that yucky mucus fall.  When we got home, she had her pear shape nose back to normal.  :-)

She just loved this chair!

This morning when I got her out of bed, I noticed that a few of her finger tips were hard to the touch and white in color.  They almost looked like a burn trying to heal. I am hoping that it is just dead skin with new growth underneath.  We also had an early appointment with the orthotics.  I had bought Eva a new pair of shoes for obvious reasons so I had to get a new lift on the new shoe.  We arrived ten minutes early and Eric took her old shoe and new shoe to the shop-room.  We waited in the jungle themed room for about twenty minutes until he returned.  He handed us the shoe, said our good byes, visited the salt water aquarium in the waiting room, and finally we ventured back home.  I dropped off Eva to Dad and went off to the Y.  In between classes I went to the Child Watch area to get an information paper that they were handing out to parents.  It was a "Medical Alert" sheet.  It stated that there had been a minor outbreak of Hand, Foot, and Mouth disease (HMF).   I then spoke with the person in charge just to see if this sheet was solely about Eva.  She stated that there had been six confirmed cases of HMF and it's sister syndromes so far,  mine being number seven.
I left there and found out Granny was waiting at the house for my arrival for lunch.  She arrived just before I did so the girls were as always very excited to see her.  After a few minutes,  Eva gave her the finger death grip while Granny was walking her around, trying out the new shoes.  She said to me "I don't think the lift was done correctly, she still isn't walking straight".  I glanced at them, looked at Eva's feet, and said "@!*%!! He put the lift on the wrong shoe!"  My disappointing sigh was long and breathless.  I gave them a call and they said I could come in any time tomorrow to get it fixed.  It's a good thing my day is clear because I was wondering how spend my Thursday morning.  I guess putting another unwanted 40+ miles on my vehicle sounds invigorating.

Doctors Visit

I could not be any happier about our nurse and doctor's reaction today.  They were both appauled about the State's decision denying Eva for services.  Needless to say, they had no objection to sign the letter I had written for them.  And because my letter did not fit on their letterhead, the nurse quickly retyped the letter to properly fit so that I could leave with it.  I also believe that if the Medical Review Board would ask our peditrician to speak behalf of her letter, she would not object to do so. 

Eva was also seen becase of her seizure on Wednesday.  Her bumps have doubled in the affected areas.  These areas are under the diaper, elbows, knees, hands, nose, and feet.  I assumed that it was hand, mouth and foot disease.  What she was diagnosed with is called Gianotti Crosti syndrome or papular acrodermatitus.  The infected area looks like little pimples.  I would assume that they are painful because she is not as mobile as she normally is.  I am treating the diaper area with medicated ointment that we got from the pharmacy when she had roseola virus.  Our nurse also called in another prescription for additional ointment. 
Gianotti Crosti Syndromw Information

Sometimes I wonder if the saying "when the going gets tough, tough get going" effects me daily.  We had such a great day on Tuesday with walking and the therapy sessions but on Wednesday we took a shift in gears.  We did our normal routine in the morning and were starting our errands around eleven.  Went to the gas station and opened up the back door to get the trash and glanced at Eva.  She looked at me with worried eyes, let out a cry, hen started to have a seizure.  It lasted about two minutes.  After she stopped and was getting exhausted, I took her out of her car seat and we went inside.  I asked the lady for a clean towel to get coldn and wet.  We stayed inthe station for about ten minutes.  I put her back into the car and we went home.  I checked her temperature and it was 102.9. I gave her both ibuprofen and tylenol.  She stayeed awake for about an hour and went back to sleep for an hour and a half.  When she woke up, she was crying hysterically and was also doing the full body hiccups. They did not last very long but when she had one, it made her pain cry.  I decided to take her to the window, since looking outside seems to calm her, and she was reaching for Karla.  I took her outside so that she could be closer.  She did like Karla being close but did not want to interact as normal.  We went back inside and she was hungry.  I gave her some chicken, cheese and crackers.  After about an hour, she was sleepy again and I placed her back into bed.  She slept from about 245 to 530.  After she got back up, her energy level was almost normal and she was hungry again.  I felt more comfortable but didn't get a good nights sleep. 
So again, when all gets tough, do I have to get tougher to get things going?

Our insurance situation is still in the process.  I have an appointment on Friday with our pediatric doctor for a consult in regards to a letter of appeal to the state.  I hope all goes well and of course in our favor. 

We had a revolving front door today.  At 8:30, two ladies came to give Eva her one year evaluation.  They recommended that she get developmental therapy added to her schedule.  I was happy to hear and observe two strangers see that she is far behind her peers.  That is a good thing (the additional therapy that is). 

We also had speech therapy today.  Eva was looking at her sign language book and showing or saying dog, cat, baby, book, fish, flower, hat, and telephone.  She has yet to conquer bird and ball.  She can also say in sign bath, more, drink, and eat.  I think there are more I just can't recall at this moment.  Finally after nap, her PT came.  We started working on her quads, going in the sitting position and making her stand without assistance.  Then we decided to try walking for the first time with assistance.  She was literally doing a death grip on my fingers but Lenore suggested me to give her the balance needed by placing my finger tips on her hips.  That worked!  So we were sitting about four feet across from each other and helping Eva walk back and forth.  She ended up taking six independent steps on her own!  I swear, not much makes me emotional but I could feel a small watery substance come to my eye.  I quickly blinked hard and whatever that was went away.  I was so happy and proud of my little wonder-child.  I really think that she will be walking by her birthday.  We have six more therapy sessions to master this act.   With her perseverance and much assistance, I can see this goal accomplished.