Memorial Day!

Memorial Day was one of the best days we have had in a while. Sam has had some issues with feeding which has really gotten Scott and I down. However... Sam has been making some gross motor gains which have made us very proud. He is trying to crawl using his head as a fifth appendage and he has actually moved forward a bit. But the biggest thing Sam has done was push himself to sitting all by himself. He did this about 7 times yesterday!!! This is a HUGE milestone and one that is indicative of a prognosis that leads to one day being able to walk. Some of the CP scales and research state that if a child can push to sitting independently before the age of 2 there is a 90% chance that child will be an independent walker.

We were so happy that this very special occasion was shared by my dad, who I was on the phone with the first time this happened yesterday morning. I think I blew out his ear drum. Sorry pop... Then our friends Nicole, Jack, Nicole, and Eric came and got to witness for themselves in person. We all had a great day as Sam once again was able to shine his light onto everyone he meets.

Take a look for yourselves to witness this amazing event.

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5 Things I Love About Being a Mother to Sam...

5. I love that I have learned more in the past 21 months from my son than I have
ever learned from anyone in my whole entire life.
4. I love not taking for granted every little piece of my son's being.
3. I love how when I am holding Sam he will not go to anyone else.
2. I love that I can kiss him 1 million times in a minute and I still cannot get enough and no one can tell me to stop because he's mine!
1. I love the way Sam can look at me for what seems like hours and how I can just get completely lost in his big amazing eyes. When he does this any pain, issue, trouble, or concern, just melts away and there is just peace.

Regulations

Have I ever mentioned that Sam is not a good sleeper. On top of all of our other trials and tribulations I can count on my fingers and toes the amount of times that Sam has slept straight through the night. I always thought this could be due to him being fed continuously throughout the night. Since Sam had his Nissen Fundoplication surgery we can now feed him more throughout the day and keep him off all feedings at night. Well we started not feeding him at night this past Sat. and he has been sleeping straight through the night beautifully. But now we are having trouble regulating his feeds during the day. We are getting there slowly but surely with lots of set backs and changes. Its all so frustrating and scary. I am such a bundle of nerves lately I don't know how anyone can stand me. To be honest its hard getting up in the morning knowing that on top of the usual every day battles I have yet another to contend with that so much of Sam's existence weighs in on. So how do I get up and move forward. I have no frigging idea... and this too shall pass...

P.S. No word from Duke yet, though I can just barely feel for the day when they call and set the date for us to go down there.

"It's all in the Cookie"

Did I ever mention how much I HATE taking Sam for doctor's appointments??? He actually has been traveling quite well since we got The Leshin Family Truckster. But the doctor visits are just down right miserable and most of the time pretty negative experiences. So we went to this particular visit today and the doctor was really negative. According to her at this point Sam has not made any gains in the swallowing department and things don't look hopeful. Also did I mention that Sam is OFF continuous feeds. Yup you heard me. We can feed him 3 times a day and he has been doing great. Not only is he tolerating the feedings but he has never been more calm and happy and engaging even during PT and OT therapies. But according to this doctor Sam is extremely uncomfortable and I am nuts for feeding him the way I am. So I asked if she had any suggestion of what to do instead and guess what??? She didn't... OK thanks doc. After I left the appointment I felt awful, sick to my stomach, my whole world collapsing all around me, again. I just couldn't get it together the rest of the day. Scott came home and took over (what an amazing guy I have!). He even took the liberty to order us dinner - Chinese food. Guess what my fortune cookie said??? "The physician heals, nature makes well." Pretty apropo considering the day I had. But I have a better fortune, "The physician's a F#$%ing moron, and mama knows best!"