Opthamologist & Orthopedic

Busy schedule this week... 

Eva's Dilation

Yesterday we met with a new opthamologist.  She was greeted by an extremely large waiting room with just a few awaiting children & babies ahead of her.  When we were called back, we started with the first nurse.  I was asked to have Eva on my lap while she looked at repeating pictures on a screen that was placed on a shelf, about three feet above our head.  But, she had to look at the mirror in front of her to do this task correctly. This was a challenging concept for her to grasp but as patient as the nurse was, she completed it. 
After that, we called in an additional nurse to assist with inserting drops to dilate.  We were then sent out to the waiting room for at least thirty minutes after which we were again called back into the patient's room.  The lights were turned down low again and the doctor was covering her eyes, one by one, to see if her muscles responded to light differentiation. 
Her conclusion was that her vision is currently 20/60 with a slight astigmatism.  This is not something that is required to need aided correction. 



Today we had a visit with the orthopedic.  For background information, we have not seen her orthopedic since the scheduled follow up from the bilateral hip dysplacia in 2012.  At this office, we were greeted by a completely overpopulated waiting room.  This office holds all four of the pediatric orthopedic doctors that serve the metro area, and they have clinical visits for two days only a week.  Busy was an understatement.  We were told that Eva was going to get an updated x-ray of her hips before been seen.  We watched as most of the waiting room dissipated into patient rooms and Eva was finally called.  We had the x-ray done, without resistance, and was taken to the last empty room, a cast room.  Ironically, it was the same room we were in when that retched frog cast taken off. Horrible, awful, disturbing memories. 

The doctor came in and complimented how big and physically active she was.   First, he showed me a picture of her x-ray. 
He explained that the left ball on the hip is still lacking cartilage but is slowly regenerating.  I had a few questions for him - one was her running ability.  I notice that when she is running, her right leg swags outward.  He said this is call genu valgum (knee knock).  This is typical for children aged 3-6.  Because of her age (4.5 yrs) I should not be concerned.  If it continues after age six, there is a corrective surgery for this.  I also asked about physical therapy. He stated that he can write a prescription that has nothing to do with her deletion whereby we can receive therapy through insurance again.  Finally, I asked if he knew of any podiatrist or trades person that does shoe lifts without going through insurance.  He only wished that he knew someone.  We were scheduled for an appointment for 12 months out. 

Information about genu valgum:
http://www.nlm.nih.gov/medlineplus/ency/article/001263.htm

District Star

I can't believe it has been three months since my last post.  What a slacker.  Well, I can not report much except that we had attended another awesome KDVS Gathering.  I was horrible with no camera at all available so I had to rely on others for pictures.  Luckily I was able to create a custom photo book through my KDVS Family support.  Thank you all for that!!!

We also took an amazing trip out west in July and school is already at the 9 week progress report with conferences.  And, here is Eva, on the District websites rolling photos, showing her obvious amazing physical ability skills... Her facial expression is priceless. Any ideas what she is thinking?
 http://www.brownsburg.k12.in.us/

I have much to share about her progress and will do so soon. 

Surgeons update

6 weeks after

We had our appointment on Tuesday.  Our second opinion came back at a negative. So as for now, Eva does not have melanoma. She will be seen every six months unless more markings appear.  Biopsy results are benign!

Before 

Dedication to our Oldest Cousin

If Eva could answer me this question - "what would be three things you want to do today?" I almost guarantee if she could answer me, she would say swimming pool, horse, and park. Well, Sunday, she came as close to perfect as she could get.  Her cousin was graduating from high school. His open house was just outside Columbus Ohio.  We made it a day trip and had a very nice visit.  At the property, there was so much food Eva loved, especially the strawberries, chips and cake.  There was a gravity challenged hammock that got the best out of Eva but really enjoyed it after she learned to hold on.  There was a huge tree swing (or her park).  They had a small pool with a slide for the little ones and to top it off, they had horse rides.  Sometimes during our afternoon, Eva didn't know which she wanted to go to.  She was so over stimulated and loving every minute of it. 
 Life was wonderful.  Being around friends and family for a sunny afternoon was a definitely a treat. 
Congratulations Daniel, we are so proud of what you have accomplished and what you will bring for your future.  A huge thank you to Kelley and Brantley for sharing their property and creating such a pleasant afternoon. 

Post surgery update

On May 22, Eva had her nevus removed. She had three, one on each leg around her knee and the third on the bottom of her foot.
We arrived at the hospital by six.  She was in a very good mood too. After we arrived we did the basic check in process. Time went by swiftly and she was entertained by the life skills nurse. After both the plastic surgeon had circled her spots and the anesthesiologist gave a visit, the last nurse came and pushed her away in the car. She was very willing to go with her even though the picture doesn't seem to support that theory.
The procedure lasted about 50 minutes and the nurse told me that she was in recovery. Then her surgeon came and said that she did great. They will do a biopsy of the spots and I will know by next Thursday. Either way, they will call me.  We also have to visit his office within two weeks and then in six months.  I received home care instructions from him and we were finished.  Simple.
After about five minutes, the nurse brought Eva back to me in her arms.  She was in and out of consciousness. When she was out, she was snugly. When she would come to she was extremely physical and very irritable. She would whine, kick, punch, and have almost uncontrollable body movement.  If I didn't know any better, I would think that she was having mini five to seven seizures. It was a just a little concerned about her actions.  About ten minutes of this and the nurse came in with dismissal paperwork.  She was explaining to me what I needed to do at home while I was wrestling Eva, at that moment. I requested assistance to the car. The nurse asked if she could carry Eva. I told her that was fine as long as Eva would not act like she just was with me.  Well, instantly, she was a calm, sweet, recovering three year old that loved this new stranger.  Her demeanor was completely different. We walked through half the hospital to our vehicle and it seemed like everything was back to normal. I went to get the car while the nurse and Eva waited at the entrance. I put Eva in the car and we went home. No more struggles. No more hitting. I had Eva back and it took a nurse to make that happen, at least that's what I feel it was.
We got home and she was wanting to go outside and play. I did not let her go, I felt as though her legs and foot were still numb and I didn't want her to unknowingly hurt herself.  She ate lunch like a bird and took a four hour nap.
The next day, she woke up not wanting to walk on her heel and kept saying that her boo boo was ouchy. I gave her some ibuprofen and took her to school. She was instantly back into her student mode when we arrived and our normalcy continues.

Melonoma Follow-up

Eva had her procedure 11 days ago and it went smoothly.  This past Friday we got the phone message from the nurse sounding a bit distressed that we were not available but that we needed to call for her biopsy results before closing time at 2pm.  When I was checking the voicemail message, it was after four. 
Today I called and I found out that the mole on her right thigh a A-typical features.  This means that there is a possibility of future return and regrowth, or profound and confirmed melanoma.  the surgeon is sending over the slides to the dermatologist office for further review and confirmation. We should hear back from this office within two weeks. 
Also today, Eva had Field Day at school.  She was walking from the side walk towards the pavement and missed the step. ultimately falling on her knee, shin, and palms.  She took it like a trooper but her knee was bleeding, and did not stop. I took her to the restroom to clean it out and put a band aid on it and noticed that the gash on her knee was the size of a pea.  Seriously, it was super gross to look at and was really deep.  I asked the Director for some antibiotic.  We went home and I decided to call the doctors office to get it checked out.  I figured a copay was cheaper than a 20% ER visit.  After talking with the nurse, I figured out that this gash wasn't just from the fall but actually she had reopened one of her scars from the procedure.  That totally explained the large gash.  After I got home, I called the surgeon's office and they just told me to cover it with antibiotic and a band aid, keep it clean and covered. 

Insurance Battle

I have been giving words of encouragement to parents all over the world when it comes to getting all that you can for your child.  I have been telling them that as KDVS parent, you are their voice.  If you want something for your child, then fight for it.  Now, unfortunately, I must admit, it is our turn. 

Eva is no longer receiving any type of therapy services.  All of the sessions allowed have been used.  She was given 60 per diagnosis.  That's right, 60 visits for KDVS will ultimately make Eva's ability level parallel with her peers.  60.  Speech, physical, and occupational is no longer provided, ever. 

I am furious that this has happened and this is the first chapter of my fight against our insurance (or lack of) company. 

Horse Riding

 

All I can say is Eva loved it - and rode all by herself... Sorry Mr. Wallet, I can see this in your near future.

Our Last Bunny

Easter came and went again this year with absolutely beautiful weather.  When we were looking for our many candy filled plastic eggs, but Eva's attention span lasted through only about eight eggs and she was done.  She really enjoyed the playset the best. 

We did manage to get her to wear the bunny costume.  She looked just too cute.  I even video recorded her running to the playset and her little bunny tail just wobbled back and forth with every step.  It is probably one size to big for her but next year it should be perfect. 

Dinner was excellent and we enjoyed our dessert too...  Thanks Easter bunny!

Dermatology Follow-up

Good news - Eva has benign acquired nevus(moles).  However, our doctor explained that these moles can become malignant over time so she recommends that they all be removed, the one on her foot and legs.  We have been referred to a pediatric plastic surgeon to get his recommendations and to get this procedure done in a timely matter.  We have some serious traveling plans in July and I will not let the procedure interrupt our plans. 

 

Our appointment is the second week of May with the surgeon.  I hope our consultation will go in our favor.

 

One thing that I learned from the dermatologist is the ABCDEs of melanoma.  These signs are:

 

A:Asymmetry - One half unlike the other half

B: Border - Irregular, scalloped or poorly defined border.

C: Color - Varied from one area to another; shades of tan & brown, black; sometimes white, red, or blue.

D: Diameter - While melanomas usually are greater than 6mm (size of a pencil eraser) when diagnosed, they can be smaller.

E: Evolving - A mole or skin lesion that looks different from the rest or is changing in size, shape or color.

 

"Benign" refers to a condition, tumor, or growth that is not cancerous. This means that it does not spread to other parts of the body. It does not change or destroy nearby tissue. Sometimes, a condition is called benign to suggest it is not dangerous or serious.  (1)

 

While melanoma is rare in young children, it is helpful for parents to know that there are different types of moles. Most moles are harmless, but there are a few types that should be examined by a dermatologist just to be sure. (2)

 

References:

http://www.nlm.nih.gov/medlineplus/

(1) http://en.wikipedia.org/wiki/Melanoma

(2) http://www.skincarephysicians.com/skincancernet/moles_children.html

 

Concerned spots

In the past year or so, I have talked with parents of KDVS children that have been diagnosed and treated with melanoma.  I always felt so sympathetic of what other parents have to experience and feel fortunate with Eva's minimal KDVS symptoms.  That spot was just smaller than a pencil eraser then one day, it doubled in size and had two babies.  It was just strange so I made an appointment. 


Dark spot on left heel area

At the doctors office last week, our doctor said that she was not at all worried about the armpit or the knee.  Although she was concerned with the one on her foot.  She said that it was a dark, deep discoloration that should be observed by a dermatologist.  I asked her what was her level of concern.  She answered "40%".  She also said that the dermatologist office has to call us and schedule an appointment.  I know what that meant.  Normally, a new patient visit takes about 4-6 weeks or much longer.  The next day, their office called me, yes the next day.  I was shocked.  We made an appointment for the 23rd of this month.  I think that all Kool Kids beat the odds so I am just going to assume that this spot will most likely be removed (and since there had been such a quick response, my doctor's 40% could just possibly be higher).  I am hopeful to post a good response from our new doctors visit next week.  Wish us luck...


Wonderful Warmer Weather

"driving home"

Eva running!

What a good day we all had today.  Before Eva & Abigail got off the bus after school, I brought the, infamous and out of service for the season, pink car to the bus stop.  Their faces on the bus was priceless.  They flew off the steps and landed into the car.  They drove all the way home, only getting stuck once in the snow, and we kept playing for a good thirty minutes later.  Eva was even running after the car just before Abigail decided to chase after her.  It was just a whole lot of fun. 

Focusing on coloring the cow... @ winery!

After we ate lunch, I decided to do some donation pickups for our event. Our first stop was an animal groomer.  The shop had rabbits, dogs, rats, snakes, a cockatoo, and most likely other animals I didn't get to see.  There was this one particular puppy that Eva played with the whole time.  He was behind a screened door but she continued to play with him.  She kept bringing him leashes, stuffed dog squeaky toys, and verbally saying "hi puppy" over and over.  It was great hearing her say that simple two word phrase.  After about ten minutes of playing with the puppy, she notices that the screen door had a knob that could be turned so sure enough, she turned it and ran for dear life because that same puppy was now trying to give her kisses.  It was hilarious!  She finally attached herself to my leg and I showed her that this puppy was ok, and soft, and happy, and... comforting her momentary sensory overload.  We thanked our pet shop owner and headed downtown to our next vendor, the Winery. 

Abigail & Victoria

Victoria & Elizabeth

That's right, I took them both to their first winery.  To my surprise, they had a piano that the kids could practice their finger stomping followed by a keepable coloring book and crayons.   We made a few more stops and made it home just in time to put Victoria's scooter together before she got off the bus.  Now I usually don't ride the kids toys but this particular scooter was really cool (and obviously I only know that from experience making sure it was safe to ride, of course!)  We had a blast outside.  Eva even got a chance to step onto the scooter, got her balance, then stepped off.  She was much more excited about playing in the snow with the shovels than the scooter.  I know that this weather won't last for long so we took all that we could.  I guess we all have a spring fever.

(Not so) Terrific three's!

We have had some good and not so good changes... I am one who likes to end on a good note so let's start with the not so goods.  Eva now is in a stage which most know as "terrible twos" but educators call it a developmental milestone.  She has started to show more dislikes.  For example, when we leave from school to go to therapy, she refuses to eat knowing that we are on our way. She also is choosing to not take naps anymore.  So, I actually found this out a hard way.  I thought she was sleeping but when I heard some noise I found her actually playing... With her powder.  I also found out that baby powder can potentially ruin a vacuum.  Good thing we carried a warranty.

 Eva is also also being a bit more picky with her foods she chooses to consume.  When we have a meal, let's say its carrots, potatoes and chicken, she will only eat three maybe four bites of the potato, and that's it.  She will not even try the others.  I am starting to supplement at night now with milk and carnation.
Let's now focus on the good.  No matter what the weather, she loves going outside. When it is at least 25 degrees, we all get our snow gear on and head to the park for sledding.  Eva loves to go down the hills by herself without a sled, which is just super cute. We stay for about an hour or two and then head home.  She just loves all of it.  One day when it was just a little to cold for her to be out but her sisters insisted on going out, so I decided to stay inside with her. When we were finished with a book, she stayed in her room to play.  When she came out of her room, she obviously was trying to tell me something... and then showed me... I understand that she now has the concept of our family motto "what's fair for one is fair for all".  I love the fact that she completely undressed herself (not such a great quality) but found a hat and a snow bibs to put on.  She is just showing us her great memory and comprehensive skills.   I love happy endings. :)

No Hair Stress

Skeptical yet curious

We went to Edy's to get all of Eva's hair cut.  Let me just set the scene for a moment.  We pulled into the lot and their was one spot left.  We parked, got out of the car and went into the back door.  Now, Eva had been here before many of times watching me, dad and sisters get their hair cut. So we are going in and a gentleman is filling peanut M&Ms into the nail area candy jar for patrons, the nail artist is cleaning her supplies at the sink and then around the corner, an elderly lady is getting her hair permed.  All three hair consultants were talking with each other, two did not have clients.  We took our jackets off and placed them onto the waiting chairs.  Edy asked me if I thought Eva would have any trouble and of course I said "no, she'll be just fine".  She had asked Shilah to cut Eva's hair.  I looked at Eva and said "come on, lets get your hair cut" in such a peppy, cheerleader kind of fashion.  She looked at me, the booster in the chair, turned around and walked to the nail area.  Then proceeded to squat down in the corner.  Their was no convincing her that getting a hair cut was good.  Edy then decided to sidetrack her thinking and was asked to go get a piece of candy.  She shyfully walked up to that gentlemen, looked at him and signed /said "ee, peez". He said 'oh, you want some candy, I have plenty.' She took one, only one red piece.  Then when she turned around, she saw that I was in the chair now and asking her to come sit with me.  After just a little hesitation, she joined me.  Shilah placed a smock around me and then around her then grabbed her water bottle and just started spraying Eva's head.  It startled her so bad that Eva hit the bottom of my lip with her head.  Such a sensory kiddo.  Finally, thank goodness, she started cutting.  Eva sat on my lap and watched in the mirror the whole time and never moved, ever.  It was awesome.  When she was finished, she got down off of my lap and walked right up to the gentleman with the candy and signed/said "mo, peez".  She reached in that candy and grabbed about five.  All in all, we got her hair all one length now - hooray! 


"Say Cheese"

Our Snow Day

Love at first snow...

We have quite a storm today with at least eight inches of snow and it is still falling hard.  Instead of a nap, we let Eva play in the snow.  She was very irritated with the boots Scott made her put on, but, when she got outside, she was touching, stomping, kicking, jumping, and absolutely loving the snow.  I had just done the driveway with the blower and she would have a running start right into the foot tall edging and ultimately just fall into it.  She was such a daredevil too.  We have a very slight slope in our driveway.  Well, the snow was coming down so fast that it was covered quickly again.  I grabbed the sleds, then Eva and finally placed her in my lap and we slowly went down the driveway.  She signed "more" with the biggest smile on her face.  Then I decided to have her go solo on her belly.  Oh my gosh, she absolutely loved it!  We played outside for at least two hours.  So happy we skipped the nap - their so overrated on days like this anyway!