"Number 2"

Wow, pretty funny that I would be so excited about "number 2", but I am. Nicholas just went "number 2" in the potty!! This was huge!!! He hasn't gone poo in the potty in I am guessing 2 years. A little background before I get right into the nitty gritty. If I have already lost you, I am sorry, I just had to note this special day with a blog.

Nicholas is still in diapers. He is going to be turning 11 this summer. Don't get me wrong, he has had so much success with potty routine. He has come a long way, but it has also been a very long road. Most people are done with the joy of potty training by age 3, maybe 4 if you are unlucky. Maddie was pretty much done at 2 and I remember being so thrilled to not have 2 kids in diapers any longer.

Nicholas' situation is a bit more difficult. He is neurologically impaired, and so the doctors didn't know if he could even go potty on command or have the capability to "hold" it and stay dry for a period of time. But the doctors also said he may never walk, make sounds or be able to communicate in any way also, and he has proved them wrong little by little.

I remember when Nicholas was younger, potty training age, I had hope that he would totally get it. Hope is something you never ever give up but over the years, I have to admit it has wained a bit when it comes to potty training.

Nicholas is brought to the potty every 45 minutes during program which is M-F for most of the regular day hours 8-5. The rest of the time with us during off program hours, we do what we can by bringing him to the potty. We track data every time he goes to the potty. He has an entire potty schedule depending on if he goes, if he is dry, if he is wet and goes, if he initiated and goes, on and on, etc. etc.

i.e. If he is dry and doesn't go, we take him every 15 minutes until he goes, or is wet. If he goes pee, and is dry he gets a break for 5 minutes from his program. If he is wet and doesn't go, he doesn't get a break. It is sad to see him try to get to the living room (where he likes to take a break) when he goes pee but was wet. I still don't think after all this time he understands that he doesn't get a break if he is wet. If he goes poo, he gets a 10 minute break. This is what he got today. I saw on his face that he knew it was an awesome thing that he did.  I still have hope, but not sure that it will happen again any time soon.

I have to say, for me, it is heartbreaking though to have to sit right there with him while he is having such a private moment. Unfortunately, with his seizures and instability sitting up on the potty, for his safety, it will be like this for a long time. 

Potty routine is not only "going" potty on the toilet and being dry in the diaper but it also includes everything from turning on the light switch to washing hands after. All of these things are prompted and originally started with a hand over hand prompt and are now anywhere from an elbow to a bicep prompt.

It is getting more strange to do the diaper thing. Ray and I have gotten it down to a science after all these years. Which diaper is best, how to tape them the best, how many we need to have with us when we go out. We have boxes and boxes of diapers in our garage along with chux and diaper pad inserts and boxes of wipes.We are diaper aficionados I have to say. I remember moving from the cute baby type diapers to the more industrial looking ones as he got older. I was sad. It was something that I really didn't imagine. It felt very "old-folks-home"-like to me. It really is minor in the whole scheme of things now that I look back at it. But at the time, it was like losing a little bit more of my dream of having a child who might "grow" out of these special needs he had as a toddler.

Now, he is in early puberty in all its' glory. This is very weird. It just doesn't seem right for me to see my son like this. He is completely dependent on us though. He doesn't know how to wipe or to stay clean without our help. Very sad but all the more reason for Ray and I to step up to the plate. God knew that he would be in good hands with us, I truly believe that now after all these years. I wonder what it will be like when he is 15 and I am doing this. We will just take it day by day as we always do. At 15 though, I know lifting him off the floor to take him potty will be much more difficult on my back than it already is. Again, all the more reason for Ray and I to take care of us, so that we can take care of him. Gotta go, time for potty for Nicholas. :-)

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.