A Yes and a NO

There is just SO much to write about and my mind has wondered from one thing to the next when thinking about what to blog next.  Our lives are filled with so many moments that are funny, interesting, happy, sad, scary and every great now and then mundane.

One of those happy moments happened yesterday when I was going to see if Nicholas wanted to eat oatmeal for breakfast. You see, since he had his G tube placed a year ago, he has gotten lazy with eating regular food. He CAN eat and swallow just fine, that was never a problem. He does however have a LOT of food sensory issues, I am sure an Autistic thing. Foods like rice are very weird for him. I think it is like each grain of rice feels so exaggerated in his mouth. He is very aware of each little tiny piece. For us, it is just a bite of food. For him, it is soooo much more than that. He will hold it in his mouth and we encourage him to swallow, but most of the time we end up having to scoop it out. Anyway, it wasn't that he ATE the oatmeal that was my happy moment. It was that I asked him if he was hungry and he said "eeeeyyyy" which is his word for yes that he uses every great now and then. I said "great, let's eat some oatmeal." He immediately shook his head NO. This was HUGE! It was a real conversation!...for us. You don't understand. These moments are very rare. If the fog of a bad seizure hasn't glossed over Nicholas' personality, then it is just him not wanting to attend to you. I laughed and said "aw come on, let's try." I put a bite in his mouth since he cannot feed himself by spoon, and he held it. I should have listened to him. My desire to have my baby eat something was stronger than my trust that he knew he didn't want it. It is just a horrible thing to want your child to eat food and they just won't. You feel completely helpless.

I remember feeling so depressed when we found out that the doctor really thought he should have his G tube put in. I cried and cried. In fact, I won't forget Ray calling me on my cell phone because I had a doctor apt. for myself and couldn't go to Nicholas' Neurologist apt with them. Ray said, "the doctor says he thinks Nicholas should have a feeding tube put in." I was driving to my apt and just lost it in the car. By the time I got to the apt. and checked in, the girl who took my blood pressure said "Wow, your pressure is really high.!"It was 150/90! I have never had a bp problem and knew it was directly related to this horrible call I just got.

Here I go.....

Well, this is my first blog. I have been thinking about this for a long time but just haven't had the courage to do it. Not sure why today is different, but here I am.

My name is Cori and my blog is about life with my wonderfully fabulous 10 year old son Nicholas, my beautiful 6 year old daughter Maddie and last but not least my husband of 12 years Ray. Now, you ask why would I blog about my family and why is my blog called Life is GREAT!, Different, but Great!? Sit back and relax....

In 1999, My husband and I were beside ourselves when we found out we were expecting our first child. It took us over a year to get pregnant so when it happened, it was a real joy. The pregnancy was typical from everything I had read. All but one thing....Ray and I were terribly sick with a flu at about 3 months into my pregnancy. We were really down for about a week. I had a pretty good fever which never seemed to break for days. Ray and I just laid on the couch and slept in between bathroom trips for everything you can imagine. I called my OB doctor at the first signs of this flu and was advised to take Tylenol and that was all I could do. After about 6 days in, they prescribed antibiotics. We did survive the flu and thought nothing more of it afterwards. I do remember one thing very specifically during that flu, and I informed my doctor at my next visit. There was an incident where I felt my unborn baby kicking so fast, almost spasm-like, for a brief period. It never happened again and the doctor didn't think anything of it.

We were beyond excited when we went to our first ultrasound at around 23 weeks. Our doctor believed in waiting a bit longer for the first ultrasound so that he could read more clearly the ultrasound and all the details. I did have the early on vaginal ultrasounds and the baby was fine as well as were my monthly check ups. We will never forget seeing our baby for the first time and couldn't wait to find out if we were having a boy or a girl. The ultrasound technician told us what everything was, "here are your baby's fingers, toes, eyes" etc. Everything was there and seemed fine. I remember how wonderful it was to finally see this perfect living thing that I have been feeling nudge me for which seemed so long at that time.  After reviewing everything, she told us she wanted to get the doctor.

When she left the office, we still didn't have a clue anything was wrong. Now in hindsight, it isn't typical that you see the doctor on a visit for an ultrasound. While we were wating, Ray and I chatted about how we would decorate the nursery if it were a girl or boy and I believe we might have mentioned, what if there is a problem? But we quickly dismissed this idea....Nah, we don't have a history of anything in our family, everything has been just fine.

My OB doc came in and said, "what the technician is seeing on the ultrasound is this area".... I was thinking...the technician didn't tell us anything about any concerns so this was news to us. I think the doctor thought we had already discussed the area of concern with the technician already. He showed us an area in our babys' brain that was called an "enlargement". An area of spinal fluid had pooled in this area and it was in his left posterior ventricle. He said it might just be a cyst and some of those just disappear but he couldn't be certain. I don't remember much more of that appointment except that we were having a baby boy.