Wednesday, February 25, 2009

Up And Running



No Isaac is not up and running, my computer is! It's been down for over a week and now and anyone who knows me well knows how much I enjoy my beloved computer. So what's a girl to do with her time? Did I really think that by taking a little break from cyberland I would instantly have more time?.....yeah right!! Shortly before our weekend trip Isaac started cutting 2 teeth and has had more secretions, which usually means more oxygen and also more suctioning. He's doing better today than last week as he decided to scare the nurse on the Saturday while we were gone by dropping his sats (oxygen) levels. I think he was just to making sure she was paying attention or maybe he just missed us or both. That's ok, I have been actually enjoying spending extra time with him as we are making up for the nursing hours we used up for our trip. In my spare ME time I have been reading a book called "Captivating" that was inspired the women's ministry at my church. I attend a Thursday morning group called "Becoming Women Of Grace" with some really amazing women who have become like a 2nd family to me, especially since Isaac has been born. Anyway Isaac's speech therapist suggested taking photos of items, people, toys around the house and using them as flashcards to form communicating in addition to the sign language. It's so cute to see how excited he gets when he looks at these pictures. In the photo Autumn is being a good sister lately and wants to have cozy time with her brother in the rocking chair. They snuggle up together and watch movies, (well Isaac usually falls asleep) it's so cute. The other photo is of him with his most favorite snuggle up toy, his glow worm. He loves to hug it. Such a loveable little guy!

Monday, February 16, 2009

Back To Reality

This was our view from the room, it was spectacular! We had a very nice weekend with dining and watching unlimited cable with no interruptions. Of course I can't complain too much about my hot stone massage and the manicure. Sam was pretending that he didn't know what to get me for our anniversary, so I figured a weekend away was a present enough. Well he surprised me with a pretty saphire ring. What can I say, the man definately scored some points! I can't say enough about how blessed I am to have Sam as my husband throughout the challenges we have faced in our marriage the past 10 years, but mostly the past year and a half with the little guy. Well, back to reality! We saw the ENT doctor today for a rescheduled follow up for his hearing exam. Well much to our surprise the doctor said Isaac might have the trach removed this summer! Hold on, let me pinch myself, she said what? These are words I thought I would never hear. So please pray! They also mentioned that Isaac responds better to high frequency sounds than low frequency sounds like I suspected. That's why when I talk to him in my mickey mouse voice he gets so excited.

Isaac's little friend Gabby continues to have a hard time and had to go back to the hospital, but it sounds as if this stay will hopefully be short.


Saturday, February 7, 2009

Youtube video





Isaac's in an awareness video for Chromosome Disorder Outreach at http://www.youtube.com/user/chromodisorder

He's the really cute one at the end of video #3 with the dalmation outfit. I think these videos are great because they show the names and faces of the many children who can be born with a variety of chromosomal disorders. Before I had Isaac I only knew about trisomy 21 (Down's Syndrome). I will keep this link available on the side of my blog.

We're doing great and the Neuro appointment went well, no changes. Our anniversary weekend getaway is next week and couldn't come soon enough! It will be very nice to get away and momentarily be out of touch with reality for awhile. I'm also looking forward to getting a hot stone massage at the SPA. Yes, my husband has spoiled me once again!

Thank you for those who sent a prayer or a note of encouragement to Gabby's family on cb. They are very overwhelmed right now as she finally came home from the hospital, but has many more health care needs. We all know here how overwhelming that can be.

Blessings, Colleen

Monday, February 2, 2009

Our Friend Has A Website


Hello all, I know I just posted, but I'm excited to announce for those who have been praying for Isaac's friend Gabby for a long time, she now has a caringbridge site.

It is www.caringbridge.org/visit/gabbykemano.

For those who don't know, she has a similar chromosome disorder involving a chromosome 10q deletion. It has been beyond a blessing to know this family.

Please also send a prayer as we just heard the news that Autumn's school will not be having classes next year. She goes to a Lutheran school right behind our house. This has been so convenient for us with our crazy life. So now we are considering selling our duplex to move into a better school district. Well I better go! Colleen