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!?!?!