More Dancing & IDI Appt. Friday

So much fun happens when the girls stay at Granny & Pappa's house overnight.  Her older sisters got to play the new Just Dance 4 and what I have been told and what I saw, she was just trying to join in on the fun. 

Also, Eva has another appointment coming up on Friday with the IDI doctor.  I had to take her to the lab just this past Friday to get her blood drawn for this appointment.  They wanted another accurate immunoglobulin count (white blood cells) and a CBC done.  Since she had been on Septra for almost three months, we are only hoping her immune system has be producing more cells so that she will not require a transfusion.  
I was just looking back and I have been writing on our journal for over a year.  This time last year, Eva had been full force in PT, trying to get her torso and legs strong enough for her to sit on her own and eventually crawl.  She had gotten that retched cast off the last week of October and in the process had a horrible rash which caused seizures and a bad case of roseola.  Our life last year was difficult.  It was a emotional roller coaster, trying to find out answers to our multiple unknown questions.  Looking back, now, I feel so much more knowledgable and unbelievably fortunate to what I have gained in a year.  I have a much better understanding of Eva, who she is and what she is capable of becoming.  Now, don't get me wrong.  If we do not expect her to be able to complete a HS degree, then she won't.  But anyone that knows us understands that that is not how it is going to be.  Eva will be just as successful as we expect her to be.  We know that she will accomplish as much as we push, encourage, and thrive with and for her.    Her accomplishments during just this past year shows us she will never give up, and neither will we.  She is limitless.

Meeting Santa - Year 2

So we did our annual breakfast with Santa again.  I was under the assumption that Abigail would again cry and Eva would probably not want anything to do with Mr. (huge beard whe's never seen before or at least could remember) Claus.  We arrived and sat towards the back of the restaurant which just happen to pass the Claus's.  I was walking with Abigail and she stopped dead in her tracks and said, "I am going to talk to Santa, bye!"  What am I to say but, go right ahead.  She got right on his lap and said she wanted a watch and a camera.  Of course, my four year old wants a watch and camera.  After her meeting, we proceeded to the table.  We ordered our food and I took them back to talk to the Claus's.  It was very easy - with some sister help.

I couldn't figure out what Eva wanted "more" of but when we got back to the table, she was very  thirsty.  After our meeting, we ate our breakfast and then left, but of course, we had to take one last group shot. 

Abigail and her "I can do what I want smile"

Elizabeth was so proud of the
picture she made for Santa!

Hope all of you have a safe, healthy and a very Merry Christmas!




All our girls!

A Short Video

I just couldn't help myself but to get this lauging on video.  I have to confess and admit that a child's laugh is the best sound ever.   Oh and I was getting her p.j's on too - hence shirtless :)

Another Genetics Doctor

Today we visited Dr. Escobar.  He is the Genetics and Neurodevelopmental Center's doctor.  He is one of the few genetics doctor in the local area and we have been recommended to him on many occasions.  After we arrived, we were prompted to additional forms to complete and then sent back to room 5 (a 6*8 room with two chairs, a doctors chair, and an examining table).  After the introductory nurse came in and gathered Eva's height, weight, and head measurements, she asks us to wait for the PT.  We waited for 40 minutes until "Brie" arrived.  She asked that we go into the therapy room and for me to hold Eva during the examination.  I would not call it much of a PT room.  It had some foam, vinyl covered shapes, and two tables with four chairs around each table.  One table was adult size, the other was toddler size.  We sat at the adult table where she had a Bayleys Booklet opened and many different objects hidden behind a standing binder.  She asked Eva to do several different tasks; sorting shapes into its puzzle piece, building towers with blocks, opening containers, pulling apart Legos, coloring with a marker on paper to make lines and circles and feeding a small toy baby with a big spoon (which Eva kept telling her that she was ready to take a bath since she did not have clothes on). After the table testing was finished, she moved us to the foam area and asked Eva to show her her shoes.  I then realized that she was trying to get her to lift her foot up off the ground, then the other.  After that, the testing was over.  We were shown back to room 5 and asked to wait for the Counselor and Dr. Escobar. 

They arrived about five minutes later.  I had explained to them that we are receiving five different services a week.  I also explained that we did not need any other information pamplets about what Eva has.  They seemed a bit surprised that I had all the information they wanted to give me and asked me "what can we do for you?"  I asked them if they could write a letter to CSHCS to explain in detail her disorder in more genetics terms so that Childrens can accept any future service providers.  They kindly ablidged and I was given both the Counselor's and Dr. Escobar's phone number and e-mail address for future questions.  I was at least given a compliment for all my effort and not giving up.
There were no future appointments made.  I did ask them to provide her with therapy services after her birthday in June  so that the time lasp between 6/22/13 and 8/1/13.  They said that they would get provider therapist set-up.  I said that I would call in May to confirm that. 
All in all, the appointment went well.  Dr. Escobar seemed very friendly and a definite resource as a reference.  The Counselor, Megan, was also helpful and she wants to do whatever she can to make sure Eva has the correct IEP's and interventions.  I cannot complain about that.  Below, I found a link to the Bayleys Cognitive Testing description.  It is through Pearson Education. 

http://learningdisabilities.about.com/od/intelligencetests/p/bayleyscales.htm

Bayley Scales Test Early Development:

The Bayley Scales of Infant and Toddler Development is an assessment instrument designed to measure physical, motor, sensory, and cognitive development in babies and young children. It involves interaction between the child and examiner and observations in a series of tasks. As with other assessments, the tasks range from basic responses to more complex responses. For example, a basic response might involve introducing an interesting object for the child to track with his eyes. A more complex task might involve a toddler finding hidden objects.

Testing Infant, Toddler Development:

The examiner rates the child's performance on each task, and scores are totaled. Raw scores are compared to tables of scores for other children the child's age. This process yields a standard score that enables the examiner to estimate the child's development compared to other children his age. This allows the examiner to determine if the child has developmental delays, judge how significant they are, and develop an appropriate early intervention program for the child. This information can assist early service providers with diagnosing disabilities.

Halloween Picture and a Wonderful "Theraputic" Night

We had a great Halloween, although Eva did not participate in the Trick or Treating because it was to cold, she did dress for the occasion. 

As I am sure I have mentioned that therapy has influenced this household in many ways, but today, I could really see it's affect.  To start, Elizabeth wanted to play “therapy” with Eva.  She decided that she wanted to color with her as our DT has on many occasions.  She was grabbing the crayons and paper and patiently letting her go at her own pace.  Then, after dinner was over, Victoria decided that she wanted to join in on the festivities and they placed her in the ‘therapy throne’.  Although I do not think that Eva was doing anything productive, but she was definitely entertaining her sisters. 

Finally it was bath time.  Have I ever mentioned that Eva loves baths?  Well, when she ran for the tub, she started to hoist herself into the running cold water and then stopped in her tracks.  She placed her leg back onto the floor and took her own diaper off.  I don’t recall a therapist teaching her that but I guess the pinching/grasping skills are starting to become more natural.  After she successfully was bare bottomed, she sat down and lifted her foot to let me know that her socks needed to come off.  I took them off and then placed her into the tub.  I decided tonight that she could get a few new (actually just old toys put away) from the closet and gave her a Dora mermaid doll and two rubber ducks.  She was so excited about the ducks that she didn’t really notice Dora.  She was implementing speech, OT, and DT with those ducks.  She was doing the signing for duck while making the quacking or grunting sound for duck and then she would squeeze the ducks water out of its underside to make is squeak.  It was great.  All that Play Dough interaction during therapy doesn’t just leave a mark in the carpet; it actually forces her wrists, hands, and finger muscles to be put to work.   I think these 'new' toys will be cherished much further than I ever imagined. 

Message from Dad

October 15, 2012

All,

A friend of mine told me about a message that was posted on Facebook. I could not agree with it more. With Laura being out of town right now I am experiencing a lot of different things and have different perspective.


“When you are a special needs parent you learn to appreciate the little accomplishments that most take for granted. This is very gratifying and awesome. There are days however that you sit and hear a conversation of "typical" things that most deal with and you start to feel a bit isolated and it can bring you down a bit knowing that some of the things they speak of may never happen for your child. I then remind myself of how much richer and fuller my life is than most because they do not get the experiences that I share and the layers of rewards that come with those small accomplishments. For this I am truly grateful.”



Scott

One month Sick-free!

It has been a month since we last visited our IDI specialist.  During our visit, He looked over my" Eva Calender" spreadsheet and decided to prescribe her with Septra.  She has been taking it since September 30th.  It has been a daily dosage of one teaspoon at night.   I can only say that this has tremendously helped with her immune system.  We have been illness free for a month!   I hope when we get a blood draw in December the white blood counts is as good as they seem to be now. 

Information obtained from www.webmd.com:

This medication is a combination of two antibiotics: sulfamethoxazole and trimethoprim. It is used to treat a wide variety of bacterial infections (such as middle ear, urine, respiratory, and intestinal infections). It is also used to prevent and treat a certain type of pneumonia (pneumocystis-type).
This medication should not be used in children less than 2 months of age due to the risk of serious side effects.This medication treats only certain types of infections. It will not work for viral infections (such as flu). Unnecessary use or misuse of any antibiotic can lead to its decreased effectiveness.

Also, I wanted to update her verbal/nonverbal communication.  She is currently seeing two different speech therapists.  They both work on the same concepts.  One in specific knows more sign and continues to work with her on that.  Eva is also starting to mimic her lips with those speaking to her to gain that verbal control that she must have in order to make those sounds herself.  For example, if you say "cow says moooo", she will pucker her lips to mimic the moooo sound yet no sound will come from her, just the movements.  This is definite progress.  We are starting to believe that with the actions and progress she is making, apraxia is assumable not present.  She is as some say moving forward. 

Moments

Children.  How do we put the moments into words.  Some may say they remember their first tooth, the first steps, saying mama or dada.  Those simple one time moments are written down in the baby book, talked about by family members then life continues.  Other moments are cherished with planned parties, birthday dinners, Sunday brunches.  We as parents chose to remember the positive times and tend to block out the negative ones which we comprehend as learned lessons. 
Tonight, I had a moment.  It was a simple moment but definitely a moment.  It was almost as big as the first tooth (but that was not a positive experience).  I was doing our normal nightly going to bed routine: Take a bath, get pj's on, play for about 15 minutes, change diaper, get medicine, place in bed.  After the first three were completed, I said to the other girls "time to clean up ladies, I need to put Eva to bed".  Eva looked at me and walked to her room.  I quickly followed her to see what she was going to get into since I just finished cleaning up her room.  She glanced over her shoulder which I assume to see that I was still there.  She continued into her room and sat down on the floor where we usually change her diaper.  She laid down and took the position for me, on her own.  I did not have to call her name.  I did not have to help her to the floor.  I did not have to lead her away from a book to get her over to me.  It was magical.  She understood and comprehended what I was saying to the other girls and did what we routinely do.  There was no fuss.  So, I changed her diaper, put her into bed, gave her her medicine folowed by her nightcap and shut the lights.  It was a moment. So, when others have their moments, mine will be slightly different.  Simple.  Not unique.   Fortunately for me, writing them all down makes it easier to access. 

Baby has NO Fear!

So we have this bounce house that is pretty small but we are to assume that it is one of the girls favorite "toys" to play with.  When Eva was learning to walk, we would use it to teach her balance.  She was very shaky and she would fall often but she would enjoy herself.  Well, now, she is walking very well and is enjoying her toy too.  I think that her older sister still gets a kick out of playing in it as well.  You can actually hear her laughing with the noise distractions from the blower.  She loves it and really, who wouldn't!?!?!

Dance with me

Eva is getting so much more comfortable with walking that she has taught herself to dance. It may have her own "style" but it is still a dance. I wonder which side of the family she got these moves from?

 

 

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!

Two Weeks

On Saturday, Eva started having a runny nose.  Yesterday, she had a slight cough and then was progressively getting worse.  Today, she had therapy and was a little off balance but her appetite was fine.  I put her down for a nap and I had to wake her after five hours.  She was scortching hot and drenched.  From her ears to her chest was bright red.  I took her temperature and it was heading fast to 103.  That was enough for me.  I gave her both ibuprofen and tylenol and she was clingy for about 45 minutes.  After time passed, I got some juice and gave her her favorite relaxation therapy: Finding Nemo.  She sat and watched Nemo while I finished fixing dinner, helped with homework, and ate.  I scooped her up and put her in her highchair.  Her appetite was still normal.  She got some more medicine and I put her to bed.  I will give her more medicine after eleven just so she does not become a 20 pound firetruck again. 
We have a doctors appointment in the morning so I am hoping and only assuming she will be on some type of antibiotic.
Also, about a month ago, I started an Eva calendar.  Everyday since the end of July I have tracked her health.  Now that I see this pattern, it is litterally every two weeks.  She last took an antibiotic on August 10th.  If this pattern continues again in three weeks, I will see the IDI doctor and show documentation and hopefully she will get her daily antibiotic to boost her immune system.  

Details, Details, Details...

I think I have everything organized to write this post.  I had to see where I had last posted and it was the middle of July.  I little to long since I have updated but here we go.  On Saturday, July 21, Eva started to get that runny nose back again.  She had just gotten over her viral issue from the first week of the month.  Everyone can deal with a runny nose but after a few days, it turned into a cough and finally the dreadful fever.  By the 25th, Eva seemed to be ok but Abigail had an ear infection.  I am sure you can see where this is going.  Scott and I took the older two to West Virginia on the 27th for a four day  "before school starts" adventure.  At 4am Sunday, we were on our way back to Indy.  Woken by a phone call, Eva had a very high fever and needless to say, cut our trip a little short. We gave her every three hours religiously, Ibuprofen and Tylenol to control the fever.  It peaked at 104.  Luckily, she did not have any seizures.  On Tuesday, I took her to the doctor and she was placed on amoxicillian.  I was scheduled to leave on Thursday to NYC so we scheduled another follow-up appointment on Friday.  Our peds gave her a shot of penicillin in the office and gave her a script of predisone.  Scott says that an hour after the shot when they arrived home, she had made a 180 degree turn for the better. 
Now on to NYC -
The trip was every emotion possible; exciting, exhilarating, exhausting, depressing, up-lifting, mind-boggling, and more.  I was so excited to meet all of the other families.  They were so open with their child who also had C17.  It seemed like there was every part of the spectrum when it came to their child.  There was one little girl that was five.  She could not walk independently, had a feeding tube, troubled eyesight with glasses, and was not communicating verbally.  Another child who was nine was very active but not verbally.  He was an excellent speller shown by his texting and typing ability.  I also befriended a family with a three-year old son.  He had similar issues as Eva; hip dysplacia, developmentally challenged, non-verbal communication.  She had stated that she had him tested for apraxia.  This is a syndrome that connects the brain to your verbal and oral skills.  After he was tested positive, she had him in a very aggressive speech therapy program.  At three, he could be easily understood and making 4-5 word sentences.  All in all, there were about 14 different kids there.  They all had their own health issues and disabilities.  Each of their parents were so kind, patient, and resourceful. 

I knew that this experience going to NY was going to be educational but it really went over and beyond.  I now feel so fortunate that Eva is Eva.  I know that her health could be much different or even worse.   As always, she will surprise us every day with new experiences, routines, and accomplishments. 

All Around Greatness

I have so much to talk about but I am so tired from such a long weekend.  I will just highlight a few great items -
The weekend was wonderful! I met so many families and their children.  I feel so fortunate what we have and what others shared with me. 
When I got home tonight, there was a voicemail.  It was from Sylvia with CSHCS.  She wanted to inform us that Eva has been approved for all services!!! This was really the icing on the cake for my weekend. 
I will detail my experiences in the next few days. 

Baby Bullying

******READ THE FIRST PARAGRAPH BEFORE WATCHING VIDEO******

Today we were trying to get our schedule back to normal so we went to the Y for a workout.  After I was finished I got the kids out of Childcare and we had some spare time.  Abigail wanted to go to the play room.  So we went over there and Eva was casually walking around.  I decided that since I hadn't really videoed her lately, now would be a great chance.  They have this wonderful two story padded climbing and activity play set and these puzzle shaped vinyl floor pieces that the kids love to play with.  Anyway, I didn't want the other people in there to wonder why I was videoing Eva so I just was flaunting it.  So here it is...

The mother was very apologetic (after she made her daughter hug a complete baby stranger) and said that her daughter was in this "pushing stage".  I wonder if Pavlov had one of these?  Then the mother asked me about her shoes and if she had braces on.  I gave her little info about her legs being different sizes and her braces for balance.  During my explanation, Eva got right back up and was climbing, falling, walking, falling, and playing until it was time to leave.  While we were walking out, she finally started to get a little upset and I don't think it is because of her fall.  I don't think she will remember this situation but I am pretty sure her mother will. 

Finally getting over "sticky" heat

So, it has been eleven days and I think that she is finally getting over this viral cold.  I was relieved to say that through all of the many fevers, medication every four hours, predisone, abuterol, and multiple naps during the days, she did not have a seizure.  She has continually been going up hill.  We really saw a difference today at a friends birthday party.  Luckily for everyone, the rain held and the overcast clouds relieved us from the deep heat.  We were outside with the multitude of toddler activities.  Eva was so thrilled to be outside.  She was literally walking from one swing to a Tike car; from a jumper to a wagon; from a chair back to the swing.  When she would loose her balance and fall forward, she would shift her weight forward and squat to stand up.  Her activity today was from about three weeks ago and she was so close, then took a turn backwards, and is now speeding back to where she was.  I am still hoping and predicting that she will be in full walking mode by her sister's birthday in August. 
An update on the Legal case:  I have received letters from our orthopedic, pediatrician and our neurologist. I have also asked three different therapist for letters.  They are all supporting Eva's case against the CSHCS of Indiana.    I will continue to push this issue forward until she gets the services she deserves. 

Summer Sticky - Not the Heat!

Well, here we go again.  On Monday, Eva started to get a cough.  I thought that it might have been from being in the pool but it was by far not cold outside to make any sense.   On Tuesday morning, we had our therapy session and she was not as motivated as she normally is and the cough was becoming more predominant.  I was watching her while she was napping and noticed that her breathing was a bit unsequencial and overworked.  I decided to call our family doctor to see if they could get her in before the day ended.  I was fortunate enough that we could get in at 3:30.  Our nomal doctor was not there and we were seen by a different doctor that is not familiar with her.  He checked her lungs which were a bit rackely, her fever was 102.2, and then decided to have the nurse come back for vitals. The oxygen level read between 90-92.  After reviewing her records and knowing her past, he suggested to call an ambulance to take her to St. V.  So it was 4:30pm and I was at the hospital, again.  When we got there, the nurses attached her to the vitals machine, which her oxygen level fluxuated between 98 and 100, her lungs
did not sound crackely but her fever peeked at 104.7.  She was very lethargic and tired.  They gave her ibuprofen and Tylenol to lower the temperature, she got a chest x-ray, uhrine sample, abuterol treatment, and lots of Nemo.  About 6:45, she was coming back to having a little more energy.  And, I think she was hungry.  The nurse got her some comfort food, applesauce, teddy grahams, and rits crackers and two containers of apple juice.  She finished the crackers and apple sauce and seemed more content.  I got some common to her toys out of the diaper bag and was of course watching Nemo.  We waited for the uhrine test and x-ray to be looked over.   I was about 8:30 and she got completely comfortable in her bed and fell asleep.  Finally around 9:30, the nurse returned with the results and all came back normal.  I truely thought we were in for a short staycation but she said that we were going to be discharged.  The doctor came in and said the horrible word to me, "viral".  We went home, and I continued to give her the Tylenol, ibuprofen and abuterol. 
On Wednesday it was Independence Day.  She continued to cough but her nose was running like a faucet.  The fever continued throughout the day but did not get past 102.  We continued to give her medications all day, every three hours, including overnight. 
Now it is Thursday and the symptoms continue.  I called our doctor and we had an appointment at 11:30.  She slepts until 9:30 and volunteered to stay in bed until a little after ten.  I did get her up pulling her crusty hair from the side of her cheek.  She was not hungry or that thirsty but finally she decided to have some
juice.  We left for the doctors office and thankfully our pediatrician was there.  She wanted to check her lungs again by doing an x-ray.  She also listened to her chest and said that her heart beat was a bit faster than normal.  I would assume that that is from the 101.9 fever.  Our nurse did check her oxygen level and it was at 99 to 100 percent.  We left the office and went downstairs for the x-rays.  I must mention that Eva does not like getting x-rays.  After we got home, I had my phones close by to expect a doctors call.  I gave Eva some applesauce and turkey and she happily went to take her nap.  Our doctor called and said the x-ray was still normal.  She did mention that she wanted to see Eva again next week.  She also sent in a prescription for predisone.  After she woke up, I gave her a breathing treatment, Tylenol and the presidone.  She was very clingy and was coughing nonstop.  I can only assume that the medicine is loosening anything that is making all of the mucus from her nose and her coughing continue.  I am going to continue with the treatments, fever reducers, and medicine for as long as it takes to make this horrible summer "viral" go away! 

Eva is now Two!

  On Friday, it was officially Eva's Birthday.  Our little Peanut is getting "old".  We celebrated by going out to eat to our local Mexican restaurant.  It was very comfortable and entertaining with ten of us there. On Saturday we had her birthday party.  I had invited family, a few friends, and her therapists.  When the therapists came in the door, she was a bit confused, happy, and overwhelmed.  Needless to say, she is Eva and didn't seem to enjoy all of the company.  Or the cake.  Or the presents.  She was tired and went to sleep.  Because sometimes, it is not about the presents or the cake, the freinds and family that were here, it is about Eva and how she will set the tone for her events.  Thinking back two years ago, when she was just four pounds.  She taught me how to become more delicate when handling special goods.  She also expects me to be very, very patient. Now that my two year old is growing, mentally and pyhsically, she is starting to have that "I don't want that" attitude.  I am hoping that this phase will not last long. 


Collest gift! Baby sized gerbil tunnel w/tent

On an exciting note, her walking ability is progressing. She is taking about twelve steps before she falls forward and desides that crawling is still the best option.  She has what I call her "security finger" grasps to anyone who is willing to walk with her anywhere and everywhere.  I feel that she does not have her 100% confidence to walk on her own.  I know for a fact that one day she will obtain and succeed.

More Successful Therapy

Yesterday our wonderful PT came over to work with Eva for an hour.  Eva did not have much breakfast so you could say she was "walking on empty".  She is progressing in her walking.  She can go an average of 8 steps but you can tell that after 30 minutes of being on her feet she does get tired.  She also seems to be dragging her left foot - like a club foot. This may mean a few things.  One, the shoe is obviously heavier due to the lift or two, her hip alignment has still not quite healed yet.  One step at a time, literally. Sad to say but I don't think she will be walking by her birthday. Time is running to fast for that goal.  We will have to set another goal, how about Independence Day.  It will have a double meaning!

Spaghetti Dinner Interruption

It seemed like forever ago that Eva had her last seizure but this is where it all started, about five weeks ago and I am hoping that this syndrome is finally coming to an end.    She was diagnosed with Gianotti Crosti Syndrome.  I has been the evilest step-sister of Hand, Mouth, & Foot disease.  First came the seizure, then the horrible bumps in curious places of her body, followed by her snake-like skin peeling from her feet and hands and now her finger nails are falling off.  They are starting to break, then crack by the white area on her nails.  After they fall off, you can see the new nail that is more of a stub that is growing and only half the size that it should be.  So far, she has lost four nails.  Today, she was a little fussier than normal and so I decided to put her down to a well needed nap.  When she woke up, she was crying, like a pain cry, not a "mom, I am up, thirsty, and want to get out of here" cry.  So when I walked into her room, she has spots of blood on her cheek, mouth, chin, arms, left foot, left hand and various areas on her bedding.  I looked at her hands and on her left hand the thumb nail had a lot of blood around its perimeter.  I could tell she did not want me touching it or any attention given to help it.  It hurt. As a parent of a child that is far to young to understand really anything, it is so frustrating to not be able to help when it is so desperately needed.  So throughout the late afternoon, she was attached to my hip. She was clinging.  She was a little fussy.  She was irritable if I put her down. And as that parent, I was ok with that.
So dinner came and spaghetti was the gourmet meal of choice (which actually was pretty good). I decided to feed her just in case the acid from the tomatoes would bother her thumb.  While I was feeding her the spaghetti, I was enjoying a fresh artichoke and all of a sudden, out of nowhere, she starts the pain cry again.  Thankfully Scott was home and we realized she had hit her thumb and it started bleeding again, during our red-sauce spaghetti dinner.  He took the initiative to just get rid of this nail that was at least 95% off anyway, and, that 5% still attached, was painful, not just for her, but for all of us.  Oh my goodness did she cry.  After about 3 minutes, I got up, cleaned off her tray and handed her a Dora book.  Around Eva, Dora is as good as ice cream is to me.  The pain was over, at least tonight, until the next nail disappears again.
But as I reflect back through today, knowing that what I thought it was going to be and what it became, this is why I must be with her.  I know that we will have days that I will be expecting ab&c to happen and instead we accomplished either xy&z or just absolutely nothing.  I know that we as parents assume that our child or children will be able to grow and become independent without our assistance and then eventually with time, that role is reversed.  But with our precious Eva, what will her future hold?

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.     

SSI Update

I gave "Chris" my regular weekly call today in regards to an update for the SSI coverage.  This is insurance that is not income based for persons with special services.  Chris had informed me that Eva was denied coverage.  I can't even express how disappointed and heartbroken I am about their decision.  The process had started back at the end of December.  I filled out multiple amounts of paperwork, including doctors statements.  I hd made copies, used neighbors fax machines, mailed in more paperwork and talked to more "Chrises".  After Chris told me the news I had asked her the million dollar question - "Why?".  She then transfered me to one of the nurses on the review board.  The review board was the third step in this process (first being all the paperwork, second being denied by HHW which is income based).  The nurse stated that she was denied because the illnesses that she has had so far does not consistute her being "special".  I then explained that her diagnosis has many potential problems and has caused all of these medical issues.  She said 'sorry' but the decision had been made.  She did recommend me to get further research and documentation from doctors giving more information about C17 so I could appeal their decision and they could review it again. 

So now I have a new project, besdies my many daily duties.  I know and will give my most profound promise that Eva will get SSI somehow.  I will never give up until she recieves coverage.  I know that C17 is not common knowledge but will be more common after I complete my goal.   I know that technical advances will be in my favor.  And again, I KNOW she will get coverage!  My long journey just took detour but it will eventually get me back on the right road. 

Another word - full usage

"Hi"!  Yes, she has a thing for the hhh hhh sound.  She can say "hi" to just about anyone and everyone (especially blondes!)  A few other happy tidbits about Eva now -
her cold is now going on day ten, runny nose and a slight cough.  She has broken free a nub tooth, now her third on the bottom, just left of center.  She is continuely side-stepping and we are trying to teach her how to walk in a forward motion.  I still predict her walking by mid June.  And the last tidbit - her shoe lift was fixed Thursday.  It was a little higher than it should have been.  Someone asked me if that was a custom made shoe - I replied - "no, just a regular Nike with a really large lift". 
On a totally different note - I am really impressed with the amount of family, friends, and others that are following our adventures!  We are approaching the 4000 'views' from over twenty different countries.  Just last week the most views came from US, Russia, and Germany.  By saying this, if you or any acquaintances know any families that know anyone with C17, please feel free to leave a comment or contact me through email. 
Thanks for reading!

Eva's "brim" Moment!

The "Hat"

Today after I got Eva up from her nap to get ready for PT, we were sitting on the floor in front of the couch.  I had just got the yard cut and cleaned up so I was of course wearing a hat.  Eva was sitting next to me babbling something and "reading" a book.  She then grabbed a hold of my shoulder and hoisted herself to the standing position. She reached for the brim of my hat and said "hat".  I look at her with the ear-to-ear smile and motioned the sign hat (patting my head) at the same time repeating her  "hat".  She took it off of my head and placed it on hers and said "hat" again.  I was so excited!  I think that officially this is her first word.  Ahhh - a joyous moment.  Hat. I now know this it will only continue to get better.  I love seeing such moments like these when children or babies learn something and makes them feel so proud that their lightbulb has finally turned on.  Hat.  I wonder what will be next.  Hat, hat, HAT!

We have made it through the weekend seizure free.  Eva did not have a fever but we continued with the breathing treatments every four hours.  We even had one of those bonding moments when I quietly went into her room at eleven while she was sleeping.  I knew I had to give her some relief by another treatment but was hesitant to wake her.  I remembered back to January when one of our many respiratory therapists would enter the room every three hours and do it while she was sleeping.  She never woke.  They made it seem simple.  So I decided to give her one hoping that it would relieve her of coughing throughout the night.  When I turned it on, thinking that if was under her bed it would not be so noisy, it scared the crap out of her.  I felt horrible but the process must continue.  I leaned over her crib (killing my back in the process) and she continued to sleep.  After ten minutes of shifting my weight from side to side, we were finished.  She seemed better and I drifted my way to bed.  This morning her cough was better and her nose was not as prominent as yesterday.  It think that we are starting to learn how to control these reacurring colds.

Hearing Reslts - Again

Today we took a visit to the Indiana School for the Deaf.  Their campus has beautiful all stonework buildings and the greenest grass for acres.  The school was founded by Elizabeth Willard in 1849 which happened to be where our assessment was taken place - at the Eliza Willard Building.  When we arrived we entered the building and the art on the walls was in such detail.  For example, next to each doorway going into an office, hallway, or other form of passage, there were clay painted hand figures in vivid colors mounted on 9*9" etched wood.  Each of them was a letter or number for a certain sign in sign language.  It was like eye candy for the observant ones.  So anyway, we started testing at one.  I was told to keep her awake so that she would take a long nap there.  The theory was to keep her sleep deprived so that they could attached four sticker probes to her head and behind the ears and proceed to stimulate sound while she was sleeping.  It sounded like a fool-proof test to me.  First, we went into the sound proof booth and they gave her the same light-up boxes with stuffed animals int he corners - same rodeo as the others.  After five or so minutes of this, they realized that she was not interested and that we should just put her down for her nap.  I then went into another room where there was a small crib, a comfortable blue chair, the computer desk and other equipment.  I changed her diaper, gave her milk, tuned off the light and then closed the door.  Needless to say, she fell asleep after about three minutes.  To took myself to the table in the waiting room by the couches.  I went back about ten minutes later and opened the door.  I let the two interns know that she was sleeping as well as the audiologist.  I suggested that they wait about five minutes before completing their testing. 

About ten minutes later, the audiologist stated that she was a light sleeper.  She had woken up and I could clearly hear her crying.  I the stated that maybe if we give her drink back and try to close the door again that she ma go back to sleep.  So, they did just that.  About five minutes later, we all heard a sound that was similar like something falling to the floor.  One of the interns jumped to see what had happened and came back with a smile so I knew it was not Eva that made the thump.  She said that Eva was standing in the crib trying to remove all of the audio equipment attached to the crib and managed to get half of it off.  So obviously the nap test would not be completed today.  The took her back into the sound proof room and continued with the hearing screening test.  This test is measured in decibels (Db).  For a "normal" child, the range for her age is between 15-20 Db.  The smaller the number the quieter the sound.  She was in the 15 Db range on both sides.  This Has been the first positive reading from any of the hearing screening test so far!  Out of the five total hearing tests that we have had, this was by far the most professional and parent assuring experience (not to mention the staff was extremely kind and sought out her needs).  We did however schedule another appointment in May for a follow-up and confirmation of her scores. 

Second time in sound booth - obviously I am not a distraction :)

Survived the Weekend

We have made it through the weekend seizure free.  Eva did not have a fever but we continued with the breathing treatments every four hours.  We even had one of those bonding moments when I quietly went into her room at eleven while she was sleeping.  I knew I had to give her some relief by another treatment but was hesitant to wake her.  I remembered back to January when one of our many respiratory therapists would enter the room every three hours and do it while she was sleeping.  She never woke.  They made it seem simple.  So I decided to give her one hoping that it would relieve her of coughing throughout the night.  When I turned it on, thinking that if was under her bed it would not be so noisy, it scared the crap out of her.  I felt horrible but the process must continue.  I leaned over her crib (killing my back in the process) and she continued to sleep.  After ten minutes of shifting my weight from side to side, we were finished.  She seemed better and I drifted my way to bed.  This morning her cough was better and her nose was not as prominent as yesterday.  I think that we are starting to learn how to control these reoccurring colds.

Back to the Doctors

Wednesday night, Eva starting getting a runny nose.  I can only assume that it was from exposure at the Y because nobody around us or where we had been was sick.  On Thursday morning it was becoming more prominent that she definitely had a sap tree attached to her.  That afternoon after her nap, we started giving her Tylenol then switching to ibuprofen.  I checked her temperature that evening and it was only reading 99.  On Friday morning I called the doctors office to hoping to get a non viral reading.  We went at eleven and despite her symptoms of nasal congestion and a light dry cough, we got a prescription for Amoxicillian.  Friday night I placed her into bed and the monitor was not working.  ARGH.  So I set up the back-up sound only monitor.  SHe seemed ok.  When I ventured off to bed it was hard to not listen to her coughing every five to ten minutes.  She sounded horrible.  Now it is Saturday and the older two had a soccer game.  Scott stayed at home with the younger two while I watched my winning girls play hard.  When I got back, Eva looked worse.  Her eyes are puffy, her face seems a bit bigger or even swollen.  Her nose is red under the nostrils and at the tip.  Her cough is still dry but is continuous about every two to five minutes.  Her nose is still running like crazy.  The good news is is that her spirit is pleasant and her energy level is good.  I can only assume that her stomach muscle are going to hurt soon.   I can almost sense what will happen next.

Spring Break Week

This week has been a whirl-wind!  The older two were home from spring break and we have been busy bees!  On Tuesday, two very good things happened.  First, we went to the orthotic doctor and picked up the orthotics.  Now that we have been using them for almost a week, she seems to want them on more and more.  Also Shelly, our speech therapist, came over for a session.  She had brought over a new bat toy to help simulate the muscles in her mouth.  This toy (when working) has a vibration.  She really likes chewing on it - when it is working :)  Thant night, I took the girls to a McD's Playland for a quick and easy dinner.  After they finished eating, I let Eva venture around the padded floors.  She was cautiously watching this very well mannered four-year-old boy.  He was going up the steps and back down, saying excuse me every time passing by her.  She made her way up the two steps and into the first tunnel.  It had surrounding windows and a thruway that lead to the rest of the tunnels.  Once she got into that area there was no getting her back out.  She was crawling to the end, playing patty-cake with the windows, sitting, standing with help of the walls, crawling some more, then crawling away from me faster when I got within 3 feet of her. 

I was finally forced to climb into the tunnel after her to e able to leave.  It was great.  I loved her being able to explore this new habitat.  We will definitely be back for the fun.  

On Thursday we had another trip with friends to the zoo.  It was a little colder than Monday but we survived.  After we returned home, there was some demanding sister fun time and I just get lucky with this shot! ---->

Friday we celebrated Passover with my family.  It was a bit long for the kids but we had a very nice time and I know the girls received a much needed educational lesson.  They all looked beautiful but I don't think that anyone thought of taking a picture.  So now today is Easter Sunday.  e have made it through the week.  The older girls go back to school tomorrow and m routine gets back to normalcy :).  As it being Easter, the girls are again beautifully dressed up and were as happy as a butterfly when they woke up with surprises in their baskets.