Saturday, December 11, 2010

What a Week!

I'll admit. I've been in a blogging slump. So much to say but no desire to do so. Call it what you will.

Regardless, I feel the need to post something...anything. So here goes nothing....

On Monday we had Malachi's IFSP meeting. It went better than expected. There was absolutely no arguments and not once did I have to disagree. Unheard of, I know. I am oh so thankful that it went smoothly. We have CUT BACK Malachi's PT and OT from twice a week each, to once a week each!! We all feel his recovery from his stroke has been magnificent and that we don't need to keep up with the extra therapy! Woo hoo, this tickled me pink! We also decided that when spring comes he will have land PT twice a month and aqua PT twice a month! So excited about this, as I know he will LOVE it!! I also found out that we will soon be having his transition meeting (probably Feb.)! Yikes. This took me by surprise and brought tears rolling down my face! I am so not ready to put him on the bus and send him to school 4 days a week!

In other news, Malachi was taken off his Reglan. His pediatrician felt the risks out weighed the benefits and he has been on it for over a year! We are pleasantly surprised that his reflux seems to be better and we have had very few issues. We are planning on keeping him off of any reflux meds from here on out!

Hope we you have a blessed weekend. We will be busy celebrating birthdays (joshes mom and grandpa), making Christmas cookies and attending an ugly Christmas sweater party. Oh and did I forget to mention more snow and bitterly cold weather? Moving someplace warm always looks good this time of year!

Thursday, December 2, 2010

Feeling Blah

It's that time of year again and while I should be bursting with joy with all things holiday, I find myself in a funk. A fun which creeps up on me despite my best efforts to brush it off. Not only has the weather gotten cold, the snow has begun to fall and the ease of taking 2 children out has disappeared, its also Malachi's annual IFSP time. This means re-evaluations and a meeting, with his team and most likely a "discussion" or two (lets be realistic the whole meeting will be a "discussion")

After a week of evaluations, it has been determined that Malachi is behind. Go figure right? Down syndrome, premature, drug exposed, stroke, heart defect, poor vision...the odds are stacked against him. So why am I feeling so negative about the situation? Good question, but I have no freaking idea! Malachi has overcome SOOOO much, shouldn't I be happy that he is walking, crawling up the stars, signing over 40 signs...the easy answer is yes. And I am! So very thankful that his massive stroke didn't leave him paralyzed, that being born only weighing 3 lbs didn't cause him to be hooked up to an oxygen tank 24/7 and that he is doing so much...SOOO MUCH!

BUT, there are things that still get to me. Talk about how his lack of attention, his anger management skills, the fact that he STILL can not eat table food, questions about his lack of verbal speech, his lack of use in his right arm (still left over from the stroke) many challenges to overcome, such a long road a head of us, how can I not feel depressed? I rarely feel overwhelmed (for example, elijah's heart surgery and week stay in the hospital and Malachi's stroke 2 days after Eli got discharged followed by another week in the hospital...I like to think I endured that like a trooper) and I am struggling with how to handle it. I dont like it, not one bit. BUT this to shall pass...right?
For now I will look at these sweet faces...

and remember that we do this all for them! And they are soo worth it!

Wednesday, December 1, 2010


Malachi has been sick, go figure. While we were at the pediatricians office, for the 3rd time in 2 weeks, they decided to run some labs to check for allergies. While they were taking blood I ashed her to go ahead and check his thyroid. While the RSV, Influenza A and B and allergies all came back negative, his TSH came back at 5.79 and his T4 came back at 1.1. We were referred to a pediatric endocrinologist. Just wondering if any of you have been through this and can offer good questions to ask. Thanks!