A bit sour yet oh so proud...

My little boy was just diagnosed with Spastic Cerebral Palsy and is now going to be tested for seizures.  The doctor has already pretty much made the determination that what we are seeing in Connor is seizures, we just need to do the 72 hour EEG to make sure they are not harming him.  I think she wants to make sure he is not an epileptic.
He has quite a few very spastic movements he does on a daily basis where he basically loses all control of his muscles and he just shakes.  Its usually due to being excited.  We always thought it was just him being adorable. Apparently there is a technical term for it (Which I cant for the life of me remember what it is) and it is also related to seizure like episodes.
Connor will be hooked up to an EEG machine for three full days later this week into the weekend.  We will be monitoring his behavior via video as well.
As with a lot of other 3 year olds, Connor suffers from very bad night terrors.  This is common for the age, according to the neurologist but we will be video taping his sleep sessions along with the EEG to make sure there is nothing else going on (seizures) while we are sleeping in the other room.
I am secretly hoping that the EEG comes out PERFECT.  The doctor informed me that if she gets nothing (which in most cases with kids with developmental delays we might not because they don't happen frequently enough) he will just be monitored to make sure the seizures don't progress.  If she does by chance see something, we shall go from there.
Connor doesn't seem to care much about whats happening.  This is his life and he wouldn't have it any other way.  Secretly, neither would I.  :)
Someone decided that Eric and I would be the perfect parents for this very special child.  I personally think it is a lesson.  I have amazing patience now and have more sympathy for situations then I ever realized.  You never know what life is going to bring you and you are most likely not prepared.  You will learn more then you ever thought possible and this child will make you realize that different isn't always so bad.  As he gets a little older, things are getting tougher as we start to notice more and more but that will never change who he is and I would be upset if it did.  :)

Laying out the truth

So, I have become accustomed to candy coating most of what is currently going on in my life.  I do this for several reasons:  1.  It makes me feel better about my situation  2.  Most people have no clue what it is I am talking about when I try and explain things  3.  I am sick of getting the same response over and over again  4.  I am tired of feeling sorry for myself and my family.

I cant candy coat things forever.  It has finally gotten to me.  I knew it would at some point.  I was warned that keeping most of my feelings in would eventually lead me to bust and it has.  My head is spinning.  I am moody and to be quite honest, a bit depressed.
I almost never curse and every other word running through my head is fuck, fuck fuck.

My son is the light of my life.  He is my soul.  I love him more than life itself and would jump in front of bullets for him.  He is what makes me want to get up in the morning.  He is the reason I candy coat everything.
Who knew that when you gave birth to this little thing that appears so very perfect to you, so much could go wrong?  Who knew that when you found out exactly what was wrong, it would make you feel worse and make you cry more than you ever had in your whole entire life?  Who knew that 1 1/2 years after finding out your son was missing a piece of a chromosome and about 86 genes, you would still feel like shit every day and still sit crying?

I would never trade him for the world but it is getting harder and harder to mask my emotions for him so, I decided to write them all down in hopes that I might get a little relief for awhile.

I wish more people understood Connor's deletion, including myself, his doctors and people around us.  I am sick and tired of people telling me "oh, I am sure he will catch up", or "well, he looks great".  Yes, thank you for that but that makes me feel worse.  He is not catching up and yes, I already know he looks great because he is the greatest and most handsome human being around but, he is not great.  Poor guy has a tough life and never complains.  I complain for him because I have NEVER had to do half the stuff he has to do and I never will have to.  That is not fair.
It's not fair to wake up your son almost every day from a sound sleep to go to a three hour therapy session.  It is not fair to watch your son fall OVER AND OVER again hitting his head crying in pain because he has horrible balance.  It is not fair to have to strap your son into these god awful braces every night preventing him from moving his little legs to get comfortable.  It's not fair that I sit here crying to the point that I cant see.  It's not fair that my son is labeled as retarded and everyone else around me has these "normal" little children that can run and talk and play with toys without having to be told how to use the toy every single time.  WHY?  It's really not fair.  What did I do?
Connor deserves SSI.  He needs these benefits and/or the money to help us pay for the medical bills.  I want to spit on the social security office.  You have proof he is missing vital genes to live a normal life with out assistance and you still are making him go through test after test?  Fuck you.  He flunked your speech test, why do you need to make him go though a mental evaluation?  You have the proof that the doctor labeled him as retarded (something that makes me cringe every day).  Why do you need to make us go through a test to see what degree of mental retardation he is at?  Don't you know that this bothers us and it's not fair?  What else are you going to make this poor boy go through to  possibly get the money and benefits he deserves?
I am sick and tired of my husband telling me everything will be ok.  I am sure it will when I am done feeling guilty and horrible inside but you, my love, are not the person who takes him to these appointments, you are not the one who goes to every therapy session.  You don't have to wake up your son to take him to PT, OT or speech.  You for some reason have a fear of driving and make me, your wife, wake up and take you to work every day.  When the hell do I get a fucking day off?
I cant do this anymore.  I cant sit here and tell myself everything is ok.  I don't want Connor in special education.  I don't want Connor to wear braces.  I want Connor to talk, to run, to not fall, to have a normal brain, to not see hundreds of doctors and I want those 86 genes that he is missing back.  I want to know why this bothers me so much and why it bothers me when people tell me it is ok.   It's not ok.  You don't have to do this everyday and you don't have to feel the guilt of knowing this is not fair.  You don't have to look at your son who never complains and wish that he knew another type of life.
It is not fair.


I am sorry for the rant and I am even more sorry for my profanity.  I will be keeping this post up only for a few days until I feel better.  The goal of this post is to help ME.  The more I read it out loud the better I will feel.

Happy Birthday Pa Pa

September 8 was my husband's birthday.  I knew exactly what I was going to get him and I usually tag on a gift or two and say it is from Connor but this year I wanted to do something different.  So, I stole the idea from a friend and took Connor shopping for him to choose gifts on his own.
We took five dollars from Connor's piggy bank and drove over to the brand new Dollar Tree a few minutes away.  I explained to Connor what we were doing and that he was to get what ever he felt Pa Pa would want or need.  I had to remind him several times that we were there for Eric and not for Connor.
It was so cute to watch him go through the store several times and chose these very special gifts.  He loved it so much that he borrowed three dollars from me because five presents just wasn't enough.

I have my money and I am ready to go.In we go.

He went straight for the rope and chose green for pa pa.

He wanted this basket but was unable to get it out.of course we need T.P

.This way!

A much need cup cozy for Connor's non bike riding pa pa.

He wanted this animal...but decided on this.

He had to be reminded we where here for Eric and not for Connor.

Oh, he knew pa pa wanted lotion.

something pretty and something cool.all done.Happy Birthday Pa Pa.  We love you.

To my wonderful husband

Happy Father's Day.  You are an incredible father to our son.  Connor and I are so lucky to have you in our lives.
Enjoy this day with your boy!

We love you!

Happy Mothers Day

Today has been wonderful.  Connor has been well behaved and happy all day.  We went and enjoyed a wonderful lunch with my sister, nieces and my mom.  The food was horrible but the company was more than I could have asked for.  My niece Emma is in love with Connor and I was so happy to enjoy watching them interact with each other (Emma is 18 months older than Connor).  He just loves the attention he gets from her.I am now at home playing with photoshop and cant wait to eat my grilled salami and cheese sandwiches I have requested Eric to make me for dinner.

Enjoy and happy mother's day to all you wonderful mommies out there.

Let the fun begin...

Connor is officially walking now. I am amazed how fast it happened. He was taking no more than 5-9 steps a few days ago before falling and now I lose count as to how many he is taking. He is so determined. I am more proud of him than I can put into words. He is beating so many odds. I sort of knew he would walk at some point and cant believe it happened so fast.
He is making so much progress in speech as well. We were told he might talk which of course is scary to think that there is a possibility he might not but, he is babbling more and more and making sounds that can be words. He is simply amazing.
He has taught me more in two short years than I have learned in my 32 years here on Earth.
Connor can be a lesson to us all. He is determined, patient, happy and content in any situation he is given. I complain every time I take him to therapy but, he never makes a peep. He smiles, flirts and does what they tell him to do.
I am more than honored to travel on this road of life with him and thank God every day that he chose Eric and I to be his parents and learn from him.
Connor is my heart.
Let the fun of a walking toddler begin...

December 9

even pooh bear loves him.
right after we were engaged. Disneyland, November 2005
The greatest wedding EVER! December 9, 2009

On this day three years ago I married the only person I could ever imagine spending every day of my life with. You are my very best friend and my confidant. I look forward to decades and decades with you.

You and I have created such a wonderful life together and have such a wonderful little family. You are by far one amazing husband and father. Connor and I love you more than anything.

Make up your mind...

My husband is driving me bananas. He wants a flat screen t.v. It is almost all he talks about sometimes. I think its great but he has such strict stipulations in regards to the T.V. It is almost as if the t.v. is more important than us. I found these great T.V.s at Wal-Mart today. I was so excited to share them with him just to get the brush off. Those are not good enough for Prince Eric. I am sorry but we don't have 1500 bucks to waste on a T.V. I don't even spend five bucks on underwear but 1500 is ok?

I tried explaining that we have an abundance of medical bills for Connor piling but and they are getting bigger weekly. I got the brush off.

I guess he will never be satisfied.

ACK!

And it starts yet again...

Appointments that is. I thought for sure once we had a diagnosis for Connor things would be ok. I was right in the sense that we feel ok knowing what is going on but very wrong in the sense that I thought we could just move on and live like it never happened. NOPE.
Here is the line up of what is to come....
Connor will be seeing a hand surgeon today.
He will be having a kidney and pelvic ultrasound next week.
I will be making an appointment to see a pediatric cardiologist for an echo cardiogram within the next week or two.
AND
I will also be making an appointment for Connor to see a pediatric urologist shortly.
Most of these appointments are all precautionary measures due to his deletion and translocation but some are because we know it is necessary.
The hand surgeon is something I have always know we need to see. Connor has dislocated thumbs on both hands (the left is much worse). He has always seen an orthopedic doctor but now that he is getting older-it is starting to hinder his abilities to do things. This problem is also caused by his missing genes. I am so hopeful that all he will need is a little brace on his hand to stretch the muscles and tendons but I am the only one this hopeful. My family thinks surgery might be needed. I guess I will find out in a few hours.
The appointment I am most nervous about is his kidney ultrasound. I know kidney problems and heart problems are common but his heart has always sounded great. Connor is ALWAYS thirsty. It just makes me a little nervous that it could be his kidneys. I am also nervous that he might not sit still long enough for the ultra sound. Eric will be with me at that one.
The other appointments will wait until we get back from a weekend trip to see a friend marry.

My husband and son...

What would I do with out them?
They truly make my life perfect!

My daddy must really love me....

He got me the best wagon ever.

Are we playing games here?

So, back in June, Eric and I had our blood taken to see if the chromosome issue Connor is dealing with might have been passed from one of us and we had assumed we would get the results when we had our appointment on July 10. Well, of course they had said I had never made the appointment for July 10 and I had to reschedule for September 8.

I am still convinced that they deleted my appointment and because of that I had demanded an email and regular mail confirmation letter confirming our Sept. appointment.

I received and email last week from Connor's genetics counselor stating that our parent blood work would be ready in a few days. I emailed her back to thank her and reminded her that I still had not received the email or regular mail confirmation for Sept. She emailed me back again with a one line email stating she would contact that scheduling department about sending it out and she typed-Sept. 8, 2009 130pm. That was it. Is that an email confirmation?

So, last week, I received a phone call from the genetics counselor. She said our blood work was in and that they both came back normal. This means that Connor's missing chromosome and trans location started with him. This is a good thing in the sense that now we dont have to give the poor kid more tests to determine what is going on with him. We know the issue and now we just have to figure out exactly what this is going to entail, what will happen in the future and what other doctors might we need to see. She told me that when we see the doctor in Sept., he will go over all the "maybes" that might happen to Connor and we will discuss treatments and doctors for issues we already are aware due to his gene loss. She also said that they know all the names of the genes Connor is missing but don't know what some of them do. That makes me nervous. Does that mean there is not enough research done on them to know or does that mean they are not significant enough to have done research?

Well, here comes the kicker- I once again asked her while I had her on the phone to please send me the mail confirmation regarding his Sept. appointment. I explained once again that I did not want to be accused of not making an appointment and it was very important that I get that paper. She told me not to worry that it was in the mail. OK.

Well, two days later I still have not letter BUT, I get a phone call from her saying that there is a cancellation on August 11 at 130pm and we were the first on the list. I took it and she told me I would receive email confirmation and a letter in the mail. Within minutes I had the email. This email looked much different than the first confirmation from Sept. This was an actual formal letter with instructions, directions and it had a letter header from the hospital. I then got the letter in the mail one day later. Where is the Sept. one that she said was in the mail?

I am now assuming we NEVER had a Sept. appointment. I figure they were waiting until Eric and I got our blood work back to determine what was going on. Well, the issue at hand started with Connor not us and now somehow, it is important? So boom, I have an apt. in two week, I get a professional letter and all this information?

Did Connor not matter if the case was that he got this from one of us? This is crap and the system sucks. What am I 12? What kind of game are we playing here? This is a wonderful hospital but the service sucks. From the research I have been doing, this stuff is pretty common which I find insane.

I am just glad we will be seen in August and Connor can finally get the treatments he may need. I am getting more and more concerned about his sutures so I am hoping to get a referral then for a doctor other wise his pediatrician can refer us.

I think these people need some lessons in class!

I started an epidemic...

I became ill very late Sunday night with what we thought was food poisoning. I was supposed to take Connor into the doctor for his high fever but could not even move at all on Monday. Connor was an angel for me while Eric was at work. I plopped him in bed with me and he played and fell asleep when he became tired.

I took Tuesday off work to finish recovering and we finally took Connor in to the doctor for what was now a rash. Turns out he has Roseola and will be good as new in a week or so.

I went to bed early Tuesday night to make sure I would be 100% Wed. morning for work only to wake up at 1A.M. to a husband violently vomiting in the bathroom and a baby screaming for his mommy while vomiting in his crib (this literally happened all at once). I cleaned up Connor and made sure Eric was ok and we all went back to bed only to wake up three hours later to them both doing it all over again at the same time. Poor Connor was so helpless and scared.

I am now under the assumption that my food poisoning was the stomach flu and I have now passed it to my family. I ended up taking today off work to take care of the clan and I must say that I am sort of annoyed that I had it SO BAD for almost three days and both Eric and Connor are doing much better after just 10 hours. I am glad they are feeling better but I was bed ridden and they are on the couch watching Blues Clues.

I love my sick men and I must say I love the fact that I am no longer feeling like that.