quiet doesn't live here anymore.: May 2007

Thursday, May 24, 2007

defining moments.

There are times that everyone experience that define you, your future and your relationships. Today that was one of those days for me and my family. Ethan has finally received a diagnoses. As much as I wanted that and even expected one it has been devastating. PVL (periventricular leukomalacia) also known as static encephalopathy. Defining Moments. How do we process this, I don't know. How do we accept this and be OK and not angry, I don't know. These are my challenges, my family's challenges and with the help of my family and dear, dear friends (tiff) we will be OK. I keep thinking that God must think I am fantastic to be given such a beautiful and sweet little fella. My guy. My love. My challenge. My hope. My God.

Ethans updates

8-8-07
Ethan starts school the day after labor day, Oh my gosh!! It will be really good for him but really hard for me. Time does pass. I can't even begin to tell you all the great progress Effie is doing. It just doesn't stop. Everyday there seems to be more words, understanding, fun and yelling. We must remember he is 2 and everything is MINE or NO NENE (nene=megan). Only 8 long months until 2 is over. Hopefully terrible twos willk be over then. Pray.
6-25-07
Ethan has been progressing tremendously!!! We are so happy to see the leaps forward he is making. He is definately understanding alot more lately and is being a little copy cat. The family support network has introduced us to another family who has a 31/2 yr. old boy with PVL. He was diagnosed a year ago, so they have already been where we are and they know where we are going. We are very excited to get to know them.
4-16-07
Today Ethan, Megan & I went to see the genetics doctor today. Once again we left with more questions than when we arrived. We were given more options of possibilities. This sometimes feels so surreal. I am still hopeful that all that is wrong is Sensory Intergration Disorder (SID). However the more doctors and therapist we see the more accepting we are that something is amiss. I told the dr. today that it would be ok if nothing is wrong and she reconfirmed that there is a real issue here. One of which we are trying to diagnose. The newest possibility that was introduced to us it called Static Encephalopathy, aka cerebral palsy. Very, Very Scary sounding...once researched it seems much more managable. It still takes my breath away, all the time.
1-31-07
We now have 3 therapist a week that come and work or play with Ethan. He gets so excited when his friends come and play with him. Sometimes Megan get to particapate with the sessions, we tell her that she is learning to teach him to speak and understand. To be his teacher. He has made more improvments in the past few weeks than he has in months. He can count, sing to Dora and Diego. Numerous other things. His new words are up, down, no, stop and go. Great improvments!!

Today Ethan met with his speech therapist, Pam. She was very impressed with his accomplishments in the past month. Ethan is communicating with shaking his head no and says "down" as a help word. I have come to the conclusion that he has words, they just sound diff. than ours. The tonality is completely different. All of this is due to low tone or something else undiagnosed as of yet. Today we started with picture identification for his foods. Eventually, if he still has limited words, he can use this as a form of communication. It is very interesting, it seems as if he hears words as music sounds, tones and rhythms.