this is what you do....

when you are not feeling well enough to go out to your gym class to play with friends but don't want to stay inside all day.  This is day three of what is supposed to be six days of rain.

WELL.....

We make too much money.  I'm bitter.
ENOUGH SAID.

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!

30 days of waiting...

Apparently we have 30 days until we here if Con will get disability or not.
Our fingers are crossed but our hopes are not up.
Con had his mental eval through the state for SSI purposes on Friday.  It was a long wait and Connor was such a perfect boy.  He amazes me with his patience and listening skills.
Once we were in the office, I was asked what seemed like hundreds of questions regarding Connor's capabilities.  Can he do this does he do that, blah, blah, blah.  The doctor then brought out some pictures for Connor to identify.  He got the first set RIGHT.  I was so proud but nervous because we are trying to get something he deserves through the state and they are very unreasonable sometimes.  He then brought out a picture with four fruits.  All of which I know Con knows.  He didn't even scan the page. He got them all wrong.  I am not sure why he didn't even try.  Then, out came this GIANT chart of colors.  Connor has no clue what colors are what.  He failed that one as well.
We were told that we should receive a letter from the state in 30 days.  Not sure if this means we will have another test in 30 or our answer will be coming in 30.  We shall see.

Did you know a 2 1/2 year old should be able to at least attempt to pour themselves a glass of tap water?  INSANE.  I had no clue when the doctor asked me if he could do that.

Making a List and Checking it Twice...

With the holidays right around the corner, I  must start my list of family members and friends to make sure everyone receives a holiday card.
I have used shutterfly for some time now.  We even have a share site through them for family who happen to live in different states.  For Connor's first Mother's Day gift to his grandma's we created a collage and framed them.  We also recently ordered Fall Cards for family and friends.
This year we will sending out holiday cards from shutterfly.  They have so many designs to choose from it makes it fun to "window shop" for that perfect card.    They have some beautiful Christmas cards to choose from and some wonderful New Year party invitations for those of us who might be throwing a get together to celebrate the new year.
I am thinking about getting my son's grandfathers a desk calendar for their home of office.  They could then look at their beautiful grandson on a daily basis.
They offer wonderful prices on prints and I have never had a problem with the quality of the prints.
Shutterfly is a wonderful site and I cant wait to use them again for our cards this year.

For anyone interested in blogging about Shutterfly and receiving a set of holiday cards, please follow the link.
http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/

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"

a list of ten

10 things that have changed since I have been married and/or had a child...

1.  I have no time to cut my hair which used to be maintained short on a regular basis.

2.  The only people that call me on a regular basis anymore are my parents and telemarketers.

3.  When my parents call, they don't want to know how I am, they want to know how Connor is.

4.  I never get invited out with friends.  When I say never, I honestly mean NEVER.

5.  I am pretty sure I don't have "real"  friends anymore.

6.  Connor and Eric are my life.

7.  I gained 50 some odd pounds

8.  I lost 20 of those pounds

9.  My patience level has improved profoundly.

10.  I miss going out.

Lets take a trip....

To our local fire house.
We took Connor to the fire station recently because he has shown a major obsession with trucks and sirens lately.  Every time I fire truck or emergency vehicle drive by with their sirens and lights on Connor cries when they are gone and signs for more.  Sadly he does not quite get the concept yet that they are on their way to save lives and can not stop for him.
The tour was amazing.  They showed us EVERYTHING.  The ambulance, fire trucks (inside and out), all of their emergency equipment, the tower where they dry their hoses, living quarters, kitchen and locker room.
Connor was scared at first.  I don't think he realized how big the trucks actually were.  But, within ten minutes you would have thought the kid lived their.  The firemen were so kind.  We all got stickers and Connor got quite a few goodies and memories to take home with him.   He now waves every time a fire truck drives by.
We cant wait to take him again.

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.

Truly one of a kind....

Yep, it is true.  This kid is not only unique but a true genuine, one of a kind.

We had Con's annual genetics appointment this past Friday and everything went as well as expected.  The appointments are stressful for my family because I need to make sure I have all of the questions I have gathered over the last year written down and the fact that we don't really know what they are going to say to us.  I could not help thinking that they may have found something not so good when studying Connor's deletion this past year.  Thank goodness that was not the case this time.

They still have yet to find another person with the same deletion as Connor making him the only one still.  Kind of neat that someday Connor will be the person some doctor will be comparing their patient to if someone else ever becomes diagnosed with this particular deletion.

Good news is that there was an article released earlier this year documenting three cases of 21Q deletions (yes, Connor's deletion finally has a name).  All of the three cases had similar deletions to one another but very different from Connors.  Connor's deletion is the largest recorded so far missing a total of 82 genes and enzymes but even though it is the largest, we got lucky some how.  Two of the three cases had very small deletions but they were missing a particular gene (IT1something  or rather) that causes severe mental disabilities (I do not like the R word so I will be using the word disabilities instead).  Connor's deletion literally  stops right behind that gene leaving him both copies. (YAY)!  He doctor did diagnose him as being mildly mentally disabled (again no R word please even though the doctor used it several times) and even though I knew that, I had a hard time hearing it from a professional.  The article was really nice to know that there are some other cases out there.  A 21Q deletion is extremely rare but I am still determined to find another kid out there EXACTLY like my boy.  I keep looking at this article just so pleased that I have a little something to compare him to now even though it is not what I had exactly hoped for.

Apparently the first ever recorded case with a deletion similar to Connor's was in 1964.  I believe these other cases from the article are more recent than that but I am not sure.

We spoke about Connor's amazing progress and finally brought up his speech which at this point is my main concern.  He mentioned to us that Connor's brain is underdeveloped which we knew but it is also very narrow making it hard for him to process speech since it is done in the frontal lobe.  He told us that he should talk but it is unknown as to if it will be normal like you or I or if he might have a slur or speak slightly slower.  He also could not tell us when.  It could be in a year or 5 years.  If by chance he is still unable to talk properly when Kindergarten rolls around, there are computerized talking devices available to help him in school.  This is all such good news.  We will continue speech therapy and possibly ask for more.  We are excited to enter him into special education pre school when he turns three.  He will be able to learn so much more there and finally meet a friend or two.

We came across some health problems we will be addressing in the next few months as well.  Connor will be getting an eye exam due to the shape of his lids and my concern with his peripheral vision.  He will also be going to a GI doctor due to the fact that the genetics doctor has diagnosed him with PICA.  I had never heard of that before and thought Connor's need to put everything in his mouth was just something he needed as a stimulation.  Turns out he is not mouthing his books or his babies but he is actually eating them.  That is why he rips the strings out of his babies and gnaws on the ends of his board books.  His body for some strange reason is craving those things.  He also eats cat food daily but we of course discourage that behavior.  I find it to be so odd that your body can crave something so unappetizing.  I know my mom used to eat dirt as a child and it turned out she had a very bad kidney problem and needed lots of medications.  We are hoping Connor is just missing an enzyme or vitamin due to his deletion.  The doctor mentioned that it could be psychological and if that was the case it would be a very, very hard habit to deal with.  Lets just hope for the best and pray it is a vitamin or enzyme deficiency.  I am so happy to see a GI doctor because not only will we address this PICA issue but now I can get to the bottom of his chronic constipation/diarrhea.  That poor kid has never had a normal bowel.  It is one extreme or the other.

Other than that, Connor looks great and has made great progress.  We were told he is a very charming little boy and definitely one of a kind.  They also mentioned that he is proof that Early Intervention works.

I am one proud mommy!

It is hard to see reality sometimes

I am with my son every day almost all day long.  I see him making tremendous progress and learning new things each day.   He is walking now and improving his balance each day.  He is now more aware of his surroundings and makes daily observations.  With a special spoon, he is starting to feed himself with tableware instead of his hands (sometimes) and his fine motor skills have skyrocketed.
With all of these improvements it is really hard to tell how delayed Connor really is until he is faced with a peer.  Darn those peers for shoving reality back into prospective for mommy and daddy.  With so many jumps of improvement I rarely feel he is so far behind.  I love him just the same but, I need to remember for his sake that he needs extra help in all areas, probably for a very long time.
I am now beginning to see how delayed his brain is.  I guess he just doesn't get things the way we do.  I am concerned he might not retain information correctly.
He is getting help for his gross and fine motor.  We are in speech therapy (which is another MAJOR concern) and he loves his new therapist but, who helps with mental delays?  I have never posed a concern for that before to his doctors.
I think I am just nervous.  He sees his genetics doctor next week and already I have 2 pages of questions and concerns regarding his future.
He needs to start school in about six months and I am scared to death.   The school district will be assessing him next month to see what type of special education he needs.  School will be so good for him but so hard for me.  It is not going to be easy to let my little man go for a long period of time each day.
Only time will tell, I guess.

The carefree life of a two year old....

Eating churros and chasing pigeons.   Life cant get much better than this.

I never get bored

Of looking at this face!

I love you and good night....

Dat Oon (love you) and inth (night night) is the absolute best part of putting my son down to sleep at night.  He has now taken to saying it with out being prompted.
I will miss his special way of saying things when he learns to talk.
He is amazing.

a near impossible task...

getting this kid to keep on his hand splints.  I put them on, he rips them off.
aw well.  Cant win them all.

Please, tell me again...

Where does the time go?????

Eric, Hank and Connor 2008

Eric, Hank and Connor2010

Give him a break. PLEASE!

And here we go again.  I had a very emotional week this week after all of Connor's therapy sessions.
On Monday, during speech, I was concerned with Connor regressing from some of the sounds he was making.  It is as if they have vanished from his mind.  Turns out Connor may have a very serious speech disorder that would cause him to have difficulty learning to speak for many years.  If he does have Apraxia it would explain a lot and make us feel a lot better for him not learning to speak yet.  Sadly, Connor might be too young still to formally test him for Apraxia so, his therapist is going to do an informal test and see where he might be with out giving him a real diagnosis until he is able to meet the age criteria.
From what I have read, Apraxia is a neurological disorder where the brain is unable to send the message to the mouth.  It all makes sense for Con.  His brain is underdeveloped and his muscles (the tongue as well)  don't work as well as they should.  It is going to be on long, long road for speech.
So that was Mondays therapy.
Then we have Thursday...
Connor has PT/OT Thursdays and is there for quite awhile.  He loves everyone but has his moments like the rest of us.
I sit in the waiting room and wait for his therapist to come and get me after his sessions.  When we spoke on Thursday she mentioned to me that he was hitting quite a bit and pinching other therapists working in the room along with a little boy named Nathan.  When he did not want to play with a toy or finish a task (I believe it was stacking pegs) he began mouthing the pegs and/or toy and biting and hitting himself.  WHAT?  Where is this behavior coming from.
She mentioned to me that he might benefit from behavioral therapy or a behavioral interventionist.  I was appalled.  It made me feel like Eric and I are not doing our job as a parent teaching him right from wrong.  My stomach was in knots as I drove home looking at my sweet boy eating his lunch in the car.
Once home, I put the boy down for a nap and called his regional center coordinator.  She said they offer ABA therapy which is something that almost all parents of autistic children want for their kids.  Connor, although not autistic, might benefit largely from it.  From what she told me, they help with not only behavior issues but also implement all of the things he may be learning in therapy.
After lots of conversations with therapists, my husband, my mom and sister (both in special education), we have come to the conclusion that Connor's behavior is stemmed from his inability to communicate.  Makes so much sense now.
So, my mom is bringing home a special program to make a real communication board for Connor and we are now looking into taking American Sign Language classes for him.  Baby signs just are not cutting it as Connor is almost at age level receptively so he knows he wants to say more than one little sign.
Lets hope it all comes into play soon.
His speech therapist is taking tomorrow off to observed the holiday so we will have to wait until the following week to have a real talk about this.  I really need to get Connor on a program where he works on the same things over and over and not try to do new sounds each week.
ACK, this is a bit overwhelming for me as I sit here and write this.
The beauty of Connor though, he NEVER complains.

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!