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Wednesday, September 30, 2015

Microcephaly Awareness Day...I Love Someone with Microcephaly

Today is Microcephaly Awareness Day....one of the characteristics of PCH is microcephaly. 




According to The Foundation for Children with Microcephaly....
Microcephaly means small (micro) head (cephaly). It is a neurological disorder where the head circumference is less than it should normally be in an infant or a child. The condition can be present at birth or develop within the first few years of life. Most parents do not know why their child has microcephaly and may never know the cause - even with advanced genetic testing. The most difficult thing we have found is each and every case of microcephaly is different. Some children have mild to moderate delays, while others have severe delays. Most of the time there is no way to know how your child diagnosed with microcephaly will develop.  In some cases delays are apparent right away, and in others delays won't show up until after a year old. So the only thing that we as, parents, can do is just try to help our child progress, enjoy every moment with your child and take life day by day - trying not to worry about all of unanswered questions (which is must easier said than done).


Tuesday, September 22, 2015

As Fragile As China


On Sunday when the van broke down, we were fortunate to have my cousin, Michelle, at the same event we were at so she came to pick us up. While transferring Ian from the van to lay on Becca and I in the back seat of her car, Ian's arm got postioned behind his head. He immediately started complaining about his shoulder. We calmed him down and didn't really think much of it. Sunday night he complained a little bit of pain but nothing his pain medicine didn't take care of. Monday was a good day and no complaining of any shoulder pain. He slept well on Monday night.  Tuesday was a different story, Ian did a lot of complaining of shoulder pain. After many doses of pain medicine, which did not seem to touch the pain and a conversation with his hospice nurse, we decided to take Ian to Hopkins ER for X-rays. I guess I'm glad we did. Ian has a fractured humerus, upper arm. So we are in a sling and keeping it immobilized. Hoping for an easy few weeks while he heals. 

My Helpers


Because of the van breaking down, on Sunday, Tuesday I was fortunate to work from home. Ian was my helper while I was working....he help the envelopes while I did some labeling. His smile was priceless.

Also on Tuesday, I began prep for break fast for Yom Kippur, my helper Becca. After I peeled all the eggs for the eggs salad she chopped them.
Feeling grateful to have some quality, priceless time with both kids.

Sunday, September 20, 2015

Things Happen in 3's

Over the past 3 weeks...I would like to say things happen in 3's and then you are done.

3 weeks ago our stove went up...ok, easy not so inexpensive fix,  a new stove.

Last week, our microwave went up. Ok so another easy fix...a new microwave.

Well today, we headed down to the Pasadena area for a Chai Lifeline end of the summer family BBQ. We had a great time, Becca went on a jet ski, swimming, both kids went fishing. It was beautiful weather. Time to come home, we are 5-10 minutes into the ride and Brian said the temperature light comes on and then we start to see smoke from under the hood...the 3rd thing...our van breaking down. Thanks to my wonderful cousin, who also happened to be at the BBQ, the kids and I got home safely whole Brian waited with the van for the tow truck. Tomorrow we find out how easy and I'm sure not so inexpensive this fix is.

I know this is all just stuff, just frustrating and interferes with life.

I believe things happen on 3's. ..ok I'm done.

Friday, September 18, 2015

Bugs Stay Away

Well it is that time of year again when we need to keep the bugs away...bugs  I say....the sickness bugs that is. Please respect our wishes and if you don't have the flu shot please reschedule your visit until after you have gotten it or flu season is over. If you are coming down with a cold or another illness or have a cold or illness, please reschedule. To a person with respiratory issues like Ian a common cold can equal death. ...sorry to be so harsh but that is our reality. 

Happy Flu Season to all.

Wednesday, September 16, 2015

Heart Hurts

Sitting at my desk today my heart hurt...the past four days I have been home with the kids because of the weekend and Rosh Hashana (the Jewish New Year). I may not have been the one to care for him but that did not matter, what mattered was that I was home in case anything happened...I was there to help through his pain. Knowing that I am in the same house makes things easier...knowing that if he is having pain and having a rough day I am right there....today I had a hard time. Today my heart hurts.

Monday, September 7, 2015

MVP Ian Scher

What boy doesn't like to play football with his friends. Getting into a huddle to figure out plays, running and screaming when his team gets a touchdown. Let's get tough and tackle each other. Okay, well maybe it wasn't tackle football ... More like modified flag football. To the games MVP, Ian Scher...all that mattered was he was playing football with his friends. The plain white shirts were designed into team shirts...for the Ravens and the Turkeys. The backyard turned into a small football field. Hats and flag football belts were put on.  Out to the field they went, music blaring. Divided into teams. It started off as Ian,Tzvi and Andrew against Josh and Jared. During the game it somehow became Ian, Tzvi and Josh against Andrew and Jared...does it really matter who was on whose team....not to us. The football was signed by all in attendance and handed off to the MVP...IAN SCHER. Once against thanks to Chai Lifeline the smiles were priceless.