April 30, 2009

I'm having a day........

***Whining and Complaining starts now***

~It's not fair that I spent 200+ dollars on braces today only to find out that these will more than likely need replaced in less than 6 months.

~ It's not fair that I then had to go and try on 100 pair of shoes to find shoes that would go over said braces only to be stuck with one choice.

~It's not fair that I have spent hours up the last week trying to get things lined up for his IEP and trying to figure out if a goals I want are too advanced

~It's not fair that my mind is constantly trying to figure out how to make each moment a "teaching" moment because Regan is falling behind his peers even more.

~It's not fair that Ricky and I are trying to figure out how much life insurance we will need to make sure that Regan gets to have the support we want for him.

~It's not fair that the entire time we are trying to figure that out we are wondering if he will even live that long. Average Life expectance is only in the 50's

~It's not fair that we make too much money for any assistance yet budget 300 a month for doctor appointments, copays, lab work, medication and the past two months we have spent over double that each month.

~It's not fair the looks people give him. Or when people keep their kids away from him.

~It's not fair to wonder if your child will be able to graduate high school when they haven't even started elementary school.

~It's not fair that you are already trying to get information about job training so that he CAN have a job.

~It's not fair that two year olds use more words than your own child.

~It's not fair to wonder if our baby will feel ashamed of his/her brother.

~It's not fair to think maybe your next child will help potty train your oldest when there is almost 5 years difference.

~It's not fair to constantly be worried that you aren't doing enough.

~It's not fair to be questioning your every decision.

~It's not fair that his days are filled with OT, PT, Speech and appointments

~It's not fair that I feel like all I do is teach.

~It's not fair that I wonder if he will ever remember me for doing something other than taking him to appointments

Today I feel like things are not going where they need to be. We are fighting all the time. Today in a shoe store he got mad and knocked shoes off the display. All because he couldn't get me to understand what he wanted. When I did get it...it was too late. He was mad and not going to listen to a word I said. I bent down to talk to him and all the sudden he jumped and busted my nose. I had to get paper towels to stop the bleeding. He kept on yelling stop at me and wouldn't let me try the shoes on him at all. He never likes to put on new shoes, he always wants his old shoes but with the new braces his shoes were falling off as he walked. I hope that tomorrow is a better day, because right now I feel like I'm failing as his mom.

April 29, 2009

We decided on a last minute trip to the beach over the weekend. We drove down after Ricky got off work Friday making it to Panama City Beach around 930. We decided to follow the GPS because it told us it had a "faster" route. WRONG in so many ways. I was ready to throw it out the window for the way it took us was almost to Destin and then back to Panama City, what a waste of an hour.
So after we went around the world to get there we played in the sand for a while, Regan loved it!! He was so excited to have this huge sand box. The next morning we were up bright and early to go play before it got too hot. Regan again spent hours playing in the sand. He thought that the ocean was the pool and would say big pool when he wanted to get wet. The bad part was double red flags the entire time. :( We would let him stand on the edge and that was okay for a little while.
But then he decided he wanted to go in the waves and really have some fun!!

We had a good time just hanging out together and Ricky and I figured that would be our last trip just the three of us. So it was nice to just play and enjoy whatever Regan wanted to do.

We headed home Monday and we were all sad to say bye to the beach. Regan kept saying bye pool, bye pool on the way out. He was at the perfect age to enjoy everything and he did.

April 17, 2009

What do you think??

I'm going crazy to know if we are having a boy or girl! I want to start shopping NOW!! I have found something interesting and wondered if anyone else has ever heard of or used this little wonder.
It is a test that you tinkle into and then the results of either boy or girl show up in about 10 mins. You can read more about it here On their website it sells for 34.99 but I saw this product somewhere for 23.99. Their website says that it is 86% correct when used between 10 and 34 weeks. So ever heard of it, used it, seen it??

April 13, 2009


I had my 12 weeks check up today. My blood pressure was up still but down from where it was. But he wants me on medicine anyway. I'm okay with that for the most part. I do know that at home it isn't elevated so it makes me wonder what will happen if its pushed lower. We will see. I'm still having major exhaustion, I can't hardly hold my head up by the time Ricky gets home in the evenings. Dinner at our house has been lacking but my sweet hubby just tells me to go on to bed and doesn't complain. How sweet!! I get to stop taking the progesterone so that may help. Since I'm past 12 weeks the placenta has taken over the hormones for the baby so that is a great thing.
The baby's heart rate was 156bpm. The doctor says must be a girl! Who knows if that old wives tale is true but maybe we will find out. I still won't find out if its a boy or girl for two months. That seems like forever but will be here soon I'm sure!!!

April 8, 2009

Mediocre News...

I wouldn't say that we got Good news or bad news from the neuro surgeon on Monday. It was mediocre news, I think. Regan is at risk for spinal cord injury more than a "typical" child is. He however at this time doesn't show symptoms that this may have already happened. We are to limit the activities that might cause jarring, impact,or cause excessive movement of his neck. Right now we know that football,gymnastics,diving, soccer, and Rugby are totally out. We are limiting him on inflatable bounce things. At this point he isn't to crazy in them and doesn't try to flip or land straight on his back. We feel at this time it is mostly safe but we may change our minds as time goes on. We will be making decisions on roller coasters and those sort of things at the time he wants to ride them. Right now the ones at six flags for his age aren't too wild but we know that the time will come that we do have to restrict him on them.
I'm sure some of you may think that we are being too cautious but we are doing what we as his parents feel is best for him. I don't want to put him in a bubble but I do not want to put his well being at risk either. There are plenty of things in life that he will be allowed to do with no restrictions,but we have to protect his neck and a spinal cord injury is not something we ever want to have to face.
We will be seen by Dr. Blount again next year and will see where we are at that point.

April 6, 2009

We're back..

We are heading back to Childrens Hospital today. This time to see a neuro surgeon. We were supposed to wait three months before going. But We now have an appointment today!! They wanted the neuro to check and see what he thought about fusion since this involved Regan's skull. I'm nervous. Ricky is working, so my mom is going with us. If (and I hope they do) we needed someone to go into xray with him she would be better anyway.

Okay well its time to get going so I'll hopefully have a great update tomorrow.