Lets JUMP for Joy....

Connor sure is.
At age 3 years and 9 months, Connor can now jump straight up.
He became determined to learn to jump while he was on winter break.  Night and day he tried and tried and boom....by George, he got it.

whats in a name....

EVERYTHING....
Listen very closely.  CONNOR SAYS HIS NAME.  You will hear the hard C a pause and NER.   It sounds like K   NER.  
We are squealing like girls because we are so proud and Connor is acting crazy because well....hes 3 and thats just what three year olds do.

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.  :)

Never thought I would say....

I sure hope we don't make too much money.
Yep, that's right.  I am praying and hoping to not be overqualified for SSI for Connor.
We got the call today from the U.S Government.  Connor has qualified for SSI services (thank goodness).  Now we have to go to the SS office and turn in 7.5 months worth of pay stubs.  I was told we would receive a letter after that letting us now either what Connor's income would be or if we were rejected due to income.  I cant believe a child who is declared disabled by the government has to depend on weather or not his parents make too little or too much money.
The money will go to good use if our income is accepted.  Connor will be able to continue with his current speech therapist even after he starts school next March.  With out the extra income, we will lose Diane due to the fact that the state will no longer be paying it and we cant afford $130 an hour.
I am a bit relieved to know that he does qualify.   It makes me feel more confident that he will get all he needs when he starts school.
I have never in my life worried so much over one person before.  Oh, motherhood!

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.

Bubble Boy...

When I found out that Connor had a chromosome deletion we had many ups and downs.  We were told more than once that he had a brain disorder and he would possibly not live a full life.  We were told he would have heart problems and several other disorders that were so overwhelming to think about at the time (and to be honest still are).  Connor saw so many specialists (still does) that first year it was almost hard to keep track of our appointments.
After several months of tests we found out he does not have a brain disorder (thank God) but does have an underdeveloped brain and missing gray matter that to all of his doctors does look exactly the same as some very serious diseases.  I cant tell you how lucky I feel to know that Connor is somewhat a miracle.  He has so much going on but all in all it could be worse.  I personally know a few people who's children do have this particular disease and I know they would trade places with me in a heart beat.  I don't care if my child's brain is missing vital information and I don't care that my son has "special needs".  I HAVE my son.  Who can ask for more.  It pains me to think of all the parents that lose their children.  They are supposed to watch us pass.  It should not be the other way around.  I do more research then needed and have become sort of an advocate for children with Chromosome Deletions.  I wish it was more widely understood.
As rare as Connor's condition is and as confusing as it is too his doctors and to us, there are other children and parents out there even more confused.
I do notice as Connor gets older that it is affecting him more and he has many more challenges than he did a year ago which just prepares us for more doctors and more therapies.  His life is our life lesson.  He has taught me patience, strength and structure.
He is by far my soul mate and my hero.  Not to mention our little miracle.
When we were told that he had a chromosome deletion and began all testing and brain scans, Eric and I were very confused.  I became picture crazy because I didn't know at the time weather or not it was a fatal condition, a normal condition, rare or what have you.  I started documenting everything and to this day still do.  Each day is a different day and the most special day with Connor.
I took a photo of Connor in a bubble bath starting at the age of four months when I took him out of his bath sling.  Connor was not able to sit up properly on his own (for more than a few minutes) until over a year so laying in the tub was normal for us and the happiest times for Connor.  He still prefers to lay in the tub to this day.   At around 23ish months he became very afraid of bubble baths so I had to stop shooting my "bubble boy" shots at the age of two.
I am now in the process of editing them to black and white, finding proper frames, blowing them up and displaying my beautiful son in my apartment.
I have so many shots of Connor that it is hard to believe that I still have a workable index finger.  I cant believe it hasn't fallen off yet.  But, until they find other kids with the exact deletion as him and until I can go somewhere and say Connor has blah blah blah and someone is able to respond oh, my cousin has that too, I will treat each day like it is a special day.

4 months

8 months

13 months

16 months

20 months 

(the fear of bubbles was beginning)

24 months

The last shot of Connor as "bubble boy"

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.

I never get bored

Of looking at this face!

and the bravery award goes to....

Mr. Connor Moody!!!!!!!
You have gone through and continue to go through so much with hardly a peep or complaints.
You have therapy several times a week, have to see countless numbers of doctors, wear braces on your hands and legs and have nothing but smiles to offer to people.

(before surgery)

(checking out his GIANT booties)

You had surgery yesterday morning, are in an insane amount of pain but still continue to smile and dance while laying lazily on the couch.

(right after surgery.  lots of pain)

The nurse at the hospital did a horrible job taking out your I.V. from your foot and you hardly screamed even though it was clear you were in agony.

We can hardly change your diaper right now without you wincing but somehow you still manage to look into mommy and daddy's eyes and say dack oon (love you).

For this Connor-you are by far the bravest little boy mommy and daddy will ever know and you deserve this award with love!

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!

Time to bring them down....

It is finally time for Connor to have surgery on his little testicles. Connor has seen a urologist a few times now and we all hoped that once Connor started walking, gravity would do its job and they would come down on their own.  No such luck this time.  In fact, the left testicle has gotten higher than the last time the doctor checked.
He will be having both brought down on June 21.  It should be a very simple procedure lasting no more than two hours.  He will be able to go home later the same day.   I am not so nervous about the surgery itself but more so about the anesthesia.  I was a nervous wreck last year during his MRI so I am sure this will be no different.
There are a few good things about getting this down while he is so young...
1.  He wont remember this when he is older.
2.  Connor should recover within several days to a week.
3.  He will be showered with love and I am sure presents.
Eric and I had the time off from work already to celebrate my birthday so instead of doing that this year, we will be using the time off to celebrate Connor having testicles in the right place.

A new comfort friend

Connor has always had the need to put things in his mouth.  He is delayed and because of that is still in the "everything goes in the mouth" stage.  He is old enough for us to let him know that we don't put toys in our mouths but recently it has become some sort of a necessity for him.
It is now to the point that he gets very frustrated with one thing or another and either bites himself or the object he has become frustrated with.  He has also proceeded to start sucking and clamping down on just about every toy and "baby" he has.
I finally mentioned it to his occupational therapist today and she suggested a vibrating teething ringthat she uses for some of her other patients that have sensory issues.  I honestly thought it was silly.  Connor is two years old and has all of his teeth.  What good would a little teething star do for his need to put everything in his mouth.

BOY WAS I WRONG.  This thing is a life saver and the boy just adores it.  He has not let go of it and has not ripped a single thread out of his "lovey" (a new mouthing habit he recently started).
He got frustrated and upset a few moments ago because he had a piece of thread on his foot and he started to bite his shirt and I told him to breathe and bite his star.  He sat there for quite a few minutes holding the vibrating star in his mouth and soon all was fine with him.  I am sure I am starting another bad habit but now he can play with toys and not mouth them and not beat himself up so badly.

Thank you learning curve for your teething star!!!

A little list of accomplishments...

My little boy is just amazing. He has come so far and in honor of him being my favorite person; I have decided to make a list of his recent accomplishments.

1.began walking in March 2010 and began taking steps backwards in May 2010

2.starting to show interest in using a spoon (a huge accomplishment considering his hands and arms don't turn and flex as easily as ours)

3.beginning to say some words. I think we are up to about 7 or 8 words now and he tries to make new sounds daily.

4.when I ask him to sing me a song he (in a very adorable high pitch voice) says DA DA DA (la la la).

5.he will be fitted for braces for his legs next week which will in turn straighten him and improve his balance.

6.CRAYONS! he finally is interested and can mark a paper with out my help.

7.His cast came off last week and he is now applying pressure to his left arm and has stop babying it.

I am sure the list can go on forever but since he is now crying for my attention I shall end it here.

We sure have come a long way.

Where to start?

It has been far to long since I have updated about this life I am leading.

Lets see...

Connor saw a heart doctor who determined he has an innocent heart murmur and his heart happens to be in top notch condition. Thank goodness. His chromosome deletion did not give him any heart conditions.

Shortly after that, he turned the big TWO. I cant believe my special little man is two years old.

We had a nice family party and then went to Disneyland to continue our celebration for a few days.

We returned from Disneyland and Eric returned to work. I was still on vacation for a few more days.

Four days into his third year on Earth, Connor stood up, fell down and broke his arm.

We were not sure what was going on at first as it did not look broken to us. We took him the the ER the next morning and well, here we sit now with a casted arm. He is miserable. He wants the cast "UP" which is off in Connor speak. He is constantly falling due to his balance being off and now his face is a black and blue map. He hits himself in his sleep with hit and falls on it daily. I feel for him. He never complains.

Thank goodness it will heal in three short weeks and be good as new in a few months.

What will happen next?

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...

Finally on a roll...

We finally have all of C's therapies set. He had his last session with Daren last Tuesday, Feb. 2. It was a lot easier than I thought it was going to be because Connor was in a ridiculously good mood. He shouted and smiled the whole session. We took a few pictures of Daren and Connor together and exchanged email. I will send him the photos I took and will also go ahead and send a video of Connor once he starts walking. I feel it is the least we can do considering with out him, Connor would not be where he is now.

Con started PT with his new therapist Thursday (I cant remember her name for the life of me right now) and also finally began OT. He LOVES his occupational therapist, Leslie. She is so sweet and he is smitten on her. His new physical therapist is also very nice and I like how she works. Daren was all about getting Connor to walk but now that he is almost there, it is time we start focusing on his very stiff joints and muscles. Once he is actually walking she said she will let us know weather or not she feels she needs to recommend braces or supports for his knees and legs.

His occupational therapist says that as soon as he gets more mobility in his arms and is able to rotate them more, he will be able to start feeding himself (with silverware) and using crayons and markers.

The one thing that has taken us so long to get through our insurance is Speech therapy. They wanted to deny Connor sessions because in order to get speech one would have had to suffer a stroke or some other debilitating disorder or have a birth defect. I guess our insurance company didnt considering missing genes to be a form of a birth defect. I had to send all of his genetic paperwork to the insurance to prove that he was indeed born with a missing chromosome and does indeed have an underdeveloped frontal brain all causing him to be delayed in speech. After that and after his doctor changed the prescription to chromosomal deletion, we got approved. He will be starting speech Monday. I am the most nervous about this one. I just cant see how leaning to talk will be fun for him. PT and OT are fun because they manipulate his little muscles while he plays with toys. He will have to pay attention to his therapist for speech which, if anyone has a toddler, knows they don't pay attention for long.

I am so excited though to here him learn to speak.

Connor is also continuing to get play therapy through the regional center and that also seems to be doing wonders. I think the play therapy is just enhancing all of his other therapies making it that much easier for him to learn.

Now that we have all of his therapies in order, my next task is to figure out how to keep my baby a baby a bit longer. I cant believe I am planning his second birthday already. YIKES.

Wow, what a difference....

January 2010
Early April 2008

It is absolutely amazing what a difference almost two years makes in a growing child. Not only has he changed physically, he is also changing mentally. C is becoming very curious and as he begins to move more and become more comfortable with standing and the attempts to walk, he discovers his new ability to do things like annoy his mommy and daddy by pushing the page button on the telephone or turning up the volume on the television to ear plugging loud.

I just cant believe he will soon be two. I am hoping for this year to be even more of a growing experience for all of us. I am positive he will be walking, talking and just making all around progress this year.

We will soon be starting nearly 7-9 hours a week of therapies for C. This will be a time adjusting experience for us all along with the excitement of what he will learn next.

I am at a loss as to what to do for his second party so we are leaning towards a family gathering. He will probably appreciate that more than anything else considering he just truly loves his family.

A new year, a new virus

It seems as though Connor and I are trapped in virus land. As soon as one of us gets better, boom, one of us is sick again and quickly passes it on. Some how Eric has managed to stay virus free.

This one is a bad one. Connor has had a bad poopy virus for almost a week now. The doctor wants us to come back if his bodily functions are not under control by Friday. My son has NEVER had a diaper rash and well, we now have our first. I wish I could get one instead of him. He is miserable, crying and uncomfortable. Lets hope this virus ends the trend of virus passing. I too have this poopy virus and it SUCKS.

Soon to be a New Year...

,I must say that I am somewhat glad to see 2009 leave and excited to see what 2010 brings us. 2009 brought my family many challenges from finding out our son has a chromosome deletion and translocation, to the scary thought of him having a horrible and fatal disease to finding out he has an underdeveloped brain. This year has also brought me many hugs and kisses from a wonderful husband and son. I must say that this year has made me a much stronger and more responsible person and has taught me patience and how to hide my feelings very well.

It has brought out my jealous side and has also brought out my lovable and happy side. I will always remember 2009 as being the year we were scared to death of Leukodystrophy and I will never forget the doctor who told us that Connor had that disease. That was the worst three weeks of my life. Finding out he did not have that disease was by far the happiest day of this past year. It honestly makes Connor's issues seem like nothing. The fact is, Connor is here, healthy and happy. It does not matter how many tests, therapies and headache we go through on a daily basis. We do it for him and will continue to do this as long as need be.

Lets hope 2010 brings us good luck and hope. I am hoping for some genius to come along and create some sort of a chromosome replacement for all of those people out there in the same boat as us.

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.