Playing Outside Picture

Today it was a high of 71 with wind gusts up to 40mph.
Is this over doing it?  I don't think she minded... 

Grand Finale's

In waiting room -
love the games for the kiddos

So in the last two weeks, our house has managed to go through the stomach flu, which was followed be carpet cleaning and a bottle of Lysol, and now the remnants of strep throat.  In Eva's case it was inevitable to miss the stomach flu but luckily for her (and me) she was not infested with vomiting.  She did in fact miss so far the strep throat but now the that other three are almost through their amox, Eva's nose is running like sap tree. She has not been accompanied with a fever and yet her spirits are good.  Except for doctors appointments, we are not leaving the house.  It is a beautiful day today so I might try to open the windows and get some of these germs moving around. It must be a present from the leap year being a high of 68!

Still waiting, Abigail and her photographic eyes. 

Yesterday we paid a visit to the neurologist.  It was just a follow up from our staycation.  We were talking about the results from her EEG and he continued to thankfully say that she does not have signs of Epilepsy.  We talked more about her abnormalities.  It seemed that he was now learning more from me.  I mentioned the statistics of 1 and every 16,000 have this particular chromosome disorder.  We tend to believe differently.  Here is my reasoning:  From the Unique website (a non-for-profit organization that supports families with children having abnormal chromosome disorders) the have about 9000 members.  Out of those families there are only 32 families that have a child with C17q.  Do the math - that is only  - .35%, not 35%, but .0035.  There is no way that their prediction is correct. He also stated again the emphasis of Scott and I doing lab work to see which one of us has the abnormality in our genes. I again refused.  Whats the point.  Do we as a couple want to point the finger at each other the rest of our lives?  I mean, if we were going to have more children (which neither one of us cannot) then we most definitely would. I would however like the other three girls tested   so that way they would know whether they can share this similar experience with their offspring.

For reference purposes

 Tomorrow we take on yet another specialists.  He is a infectious disease doctor that will discuss her immune system, or lack of.  I am looking forward to see what or how we can keep Peanut continuously healthy.  As of right now, I could not imagine a life without seizures.  Maybe, just maybe the last five was the grand finale.

Inflatables & Teeth

So I wonder how a 20 month old feels going down a 25 foot inflatable slide with four other people?  This is exactly the excitement we had today.  We ventured off to JnP for about an hour.  Eva was exploring the toddler area so extensively that she literally had stained her pants red, blue, and black in the knee area. I was amazed how happy and content she was by herself.  In this three foot tall, 15' *15' inflatable, there is an attached boat, police car, slide, dog, and other random objects.  On one occasion, she would gracefully attempt to climb into the boat.  After finally getting over the foot perimeter border after six attempts, she would do a belly/head flop and abruptly sit up and play with the steering wheel.  After playing for about three minutes, she would then go on her high knees and then belly flop back over the perimeter border to adventure another object.  We would play hide and seek while I ran around the outside of the inflatable and she would do her mighty speed crawl to try to catch me.  I can say that from her ear to ear smiles, she was having a great time.  It is always a pleasure to see her smiling, knowing how simple and normal her life is at that moment, just like all of the other thirty or so children that shared the same admission fee as us.
I failed to mention last week that we visited the dentist.  I must say that as bad as it sounds to have four children and one adult seeing the dentist in one day was not as bad as I anticipated.  After the older two had their teeth cleaned and inspected free of cavities, it was the younger twos turn.  Abigail was denying every right to open her mouth but Eva to a liking to the hygienist. When our dentist came in to check Eva's teeth, she was a bit resistance of a six foot-four man sticking his fingers into her mouth.  I then explained to him the complex order of Eva's teeth sprouting.  To start, her top central incisors came first.  Then the bottom two followed.  After that, she cut her first molar on the left.  When he said she had eight, I was shocked.  I wondered where I missed the other three?  Well, he informed me that the second molar has broke through on the left and also the first and second on the right.  It is so odd that she is getting these molars and not the other incisors or canines. Just like everything else with Eva, she will take her time and do what she or her body feels comfortable doing.  

My assumed opinion of her next visit to choose between either of these places - I'm sure that she will enjoy seeing her 25' slide again. 

Good News Today

We got home before eleven which I find amazing.  The procedure was flawless.  When the doctor came in, he stated that everything looked just like it should.  The hip/femur healed fine and are both nested in the right place.  He stated that sometimes children have different bone lengths and most of the time the nervous system (which controls the bone growth) will "tell" the other bone to decrease growth until the other is closer in length.   If the bones do not catch-up to each other, the only rarely used solution is to clamp the bone and keep it clamped from the nervous system for a while until the other bone has grown to the desired length.  Then, they will remove the clamp.  He stated that this procedure would not be necessary for a few years, if need be.  I would think that a cast sounds better than a clamped off nervous system especially since this would not happen for a few years and I am pretty sure she would remember a procedure like that.   They will continue to keep appointments for follow-ups.  Now it is time for lunch and a nice long nap.

High Hopes for Tomorrows Procedure

In the dark hours of the morning, Eva and I will be going to St. V's. As mentioned earlier, her left leg is about an inch shorter than her right.  This is caused by the hip dysplacia which was found previously in July, 2011.  We had initially met with our orthopedic last month while on our hospital staycation.  After discussing her improvements after being in that dreadful cast for 14 weeks, he stated that he needed to further examine her hip.  Therefore, tomorrow we are going for an MRI.  This is an anesthetic procedure.  So again tomorrow morning, I will wake her up about five minutes before we have to leave and deprive her of any food or drink.  It should start around nine and I am only hoping that we will be home by one.  The orthopedic had mentioned that there will be three possible solutions for her.  One is the most simple - for now - to get an inch lift for her shoe.  I could not imagine how much adult shoes will be if this path is taken, especially if she has my feet.  The second is to place her in a sling that will be mobile and basically letting gravity do the work.   This may or may not work.  The third and most "slim chance" is if the hip and femur has not healed correctly.  If this is the case, she will be placed back into a cast for an undetermined amount of time.  The thought of option three just makes me cringe.  Just looking again at that picture gives me the creeps.  You know we are just so lucky that she is such a happy and content baby.  I am so thankful that she is still young and hopefully won't remember any of this.

Tuesday Therapy's

At 9am today, we welcomed a new visitor to the house.  Her name was Ms. Kathy and she was an occupational therapist and evaluator.  When she had entered, Eva gave her a big smile.  It seemed that Kathy definitely felt comfortable being here. They started playing on the floor with various blocks, wooden and plastic, and then moved to a snack time.  She would like to have seen Eva use her thumb more by pinching and grasping which I completely agree with.  She was impressed with the sign language being used in the house.  After interacting with Eva for about an hour, she said that Eva was going to receive occupational therapy once a week.  I was very relieved that finally someone that works for the state listened, observed, and agreed with my concerns.  YEA!  Another practical therapy session will be in our schedule.  I am very happy that we will be getting these services.

We also had speech therapy today.  She arrived at 12 during lunch so that she can observe Eva while eating.  I think that we (meaning the speech therapist and myself) have realized that Eva will not be vocal very soon so we have decided to focus our attention on her facial muscles and her other means of communication.  We also have been working more on using modified sign language.  She has been improving daily.  As of now, she can sign  bath, drink, more, dad, baby, eat, and open.  You can really tell when she wants to "talk" to you because her concentration is so focused that you can see the tip of her tongue out of her mouth.  Also during speech, I got her Elmo bath book and she let out so many sounds - just trying to read it or talk to the kids in the book.  

Finally, our physical therapist came at four.  The session went well.  She was working on kneel to stand and side-stepping to the left and right.  Going left is much easier than the right because of the different lengths in her legs.  She also continues to do therapy with only one shoe on (left) to balance herself better.  They finished the session by working to standing to sitting independently.  

 I was also informed that this particular program will end when Eva turns three.  When she is 2 ½, I will be getting information about her school that she will be attending either two or four days a week, depending on her development and what she qualifies for.  The school will be in Brownsburg and there is bus service.  In August 2013, the district will be opening a pre-K academy.  I am only hoping that Eva will be starting their new location. Just a side note: I never would have thought that Eva would be going to school before Abigail.   Anyway, at the school, there will be different therapists that will work in group settings basically rotating no more than eight children.  As far as I know now, it will be a full day including lunch.  As social as Eva is, I can assume that she will not have any trouble. 

Conintuing to Grow

So as we are continuing with our daily routines, Eva seems to be acting like a real 10-11 month old.  The past few days, she has been racing into the kitchen and enjoys opening the cabinet to the pans, then closing, and repeating at least ten times.  After the pans are not so exciting to look at, she moves to the glass bowls and strainers cabinet and repeats the process.  Then, if our bedroom door is open, she flies to the bathroom and loves to take all of the boxed soap and hand towels off the shelves.  But the most exciting "toy" is short, rounded the glass vase filled with the river rocks surrounding a candle.  The rocks end up all over the floor.  After picking the rocks up not once but twice, we now keep our bedroom door closed. 
She is also enjoying going into Abigail's room and taking all of the books off of the shelf.  She find one that fit well in her hands - maybe a 2" cube board book - and will lie flat on her back with her legs completely adjacent to the floor. She then continuously talks to the book while she flips through the pages.  While I am curiously staring at her without her noticing, I wonder what she is really trying to say or read?
But then there are the few the heart-stopping precious moments where either right before we go to bed or in the middle of the night I can hear her cries.  I let her go for a minute or two  before I make my way into her room.  When I arrive and she soon feels my hand rubbing her back, she usually stops crying.  When I stop, she sits up and reaches both hands for me.  I can't help but to pick her up knowing that she wants my undivided attention of the swaying and rubbing.  As she slowly gets comfortable in my arms and begins her journey of sleep, I know that it is time to put her back into the crib making sure the rolled blankets are covering the exposed rails just in case she might of hit her head.  As much as I don't want to leave this the moment of unconditional love, I am only hoping that her infant dependency on me will soonly fade and a more independent child will begin to grow. 

A good Update - Ear tubes installed

So we had our procedure done today with ear tubes.  Everything went well.  What I don't understand is why doctors schedule patients to be there two hours in advance as an outpatient (especially an infant).  It is so disturbing for the parent to see their child be uncomfortable without food/drink and they do not understand why.  I know there is not a solution to this but I am sure that two hours is a bit excessive.
As far as Eva is going - when I was asked to go back to recovery, she was drinking her juice and was still thirsty.  So thirsty that she drank two additional cups before we had left.  She even ate a whole cup of applesauce and about a 1/2 cup of puffs.  She also felt a little warm so they took her temperature and it was 99.0.  I asked for preventative Tylenol.  I think the nurses thought I was being overzealous but I would say I was taking precautionary measures.  I got a free bottle of Tylenol out of it - well it probably wasn't free. 
We left and picked up Abigail and headed to see dad.  After that, we ventured home where a gourmet turkey, cheese, yogurt, and Popsicle lunch was served.  Then, she took a 4.5 hour nap.  It seemed excessive but well needed after the anesthetics. 
I must say the cutest thing was her little gown, way to big on her, that was extra small, had lions, bears, and tigers on it.  It also said "lions, tigers, and bears...oh my!"  What an ironic print for a child's gown. 

Ear Tubes and Therapy Update

Tomorrow we are scheduled to be placing ear tubes in each ear.  We are to arrive by 7:30am.  The surprise with this procedure is I was advised to not leave after they take her back to be put under because they will be finished in ten minutes.  That is amazing yet disturbing at the same time.  So much preparation - doctor visits, hearing screenings, more visits, preop visit, restrictions after midnight, and for only a ten minute procedure?  I have had friends tell me their experiences with ear tubes and I have heard more positive feedback than negative.  We are willing to try anything to keep these seizures, fevers, and unnecessary 'staycation' hospital visits away. 
On another note - Our speech therapy sessions have been increased to once a week.  I was happy that we received the increase but I know that she needs more.  I was also informed that after she turns three, she will be no longer in First Steps (which i knew) but she will be going to school for Pre-K at our local district.  At the school, they will provide her with the same therapy services but it will be all day, three times a week.  They also said that they provided bus services.  We could not believe that she will be going to school before Abigail.  I assure I will be getting much more information about this.  I guess my letter of intentions got some attention. 

Infectious Diseases?

Last week we saw our family doctor about another cold brewing.  She had mentioned that Eva was going to be referred to an Immunization Doctor.  So today I received a call from IDI - Infectious Disease Institute.  They scheduled me an appointment in March.  I was a bit - so to say - shocked that Eva was scheduled with an infectious disease doctor.  My first thought was - maybe she has something and it was kept quiet or I just do not know what in the world is going on.  So I called my family doctor and discovered that these are doctors that also check to see why patients continually get infections - not just diseases.
I must say that I learn something new every day from this little 19 pounder.

Another Doctor...

Immunologist - someone whom specializes in immune systems.  We went to our family doctor today in regards to her having a cold/cough again.  We were prescribed an antibiotic for ten days but we were also referred to a specialists that might be able to get some answers regarding a "weak immune system".  I guess open mindedness is essential.  I will try anything to get my baby feeling better.
Going to call the Director today.  Hopefully things will go well.

Taking Precautions

So it has been two weeks and one day since we have been out of the hospital and now the cold fairy came and Eva has a runny nose.  sigh . Hoping that we can control this one before it gets to far. 
Also, I have been waiting on First Steps to gt an OT evaluation so we can get that going.  I have been waiting since 12/1/11 for this eval.  Still, the ball is being pushed from therapists to case worker and back and now a supervisor has still not been involved.  I have sent an email to get some documentation in writing.  Also, Eva was again denied for PT 2x a week because they claim it is caused by a medical condition.  Of course it is a medical condition!  I am to contact the director tomorrow per her request to inform her of  the progress made in two weeks.  Also, ST has yet to be increased even though I was told that it "won't be a problem" to increase it to once a week.  I am becoming very disappointed in the communication and effort made.  It seems disorganized and confusing.