Wednesday, December 30, 2009

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.

Monday, December 28, 2009

Holiday time in our home...



I finally got a new computer after being offline for over two weeks. Christmas was wonderful and I always get a little sad when it leaves. But, if I want to be reminded of how wonderful Christmas is, I just have to walk into my living room. There lies the aftermath of a wonderful day. I pick up all the toys and gadgets and leave the room only to come back to see that my mini and large tornado's have been at it again. I finally gave up and just left it as is. I will be begging Eric to put it all away tomorrow while I am at work. I, after all, reorganized Con's room to make room for all of his new gifts.

Monday, December 14, 2009

Speech has been put off...

The evil stomach virus that is going around has bitten my little bug. He woke up Sunday morning covered in vomit. We lounged, snuggled and slept most of the day yesterday.
He went to bed very early last night and never made a peep. I figured the virus must be gone. I went to check on him at 4a.m. and he had gotten sick in the night and never cried out. How sad.
He seems more like himself this morning. He has kept down some pedialite and cereal. I am hoping to get some plain pasta in him after he wakes from his nap.
Sadly, our speech therapy appointment will have to wait for another day. I cant risk getting his therapist sick. I am hoping to get him in sometime again this week.
I need to start him in speech soon. He is now showing some interest in mimicking us. He now sticks out his tongue and blows raspberries. Connor is also now trying to say Elmo and for some random reason Lemonade.
He cracks me up.
Lets hope I can get him a new appointment before the new year.

Tuesday, December 8, 2009

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.


Sunday, December 6, 2009

It is lame to think this way but I think it's also normal

I have come to accept that my child is quite a bit behind the average 20 month old child in all walks of life and I love him even more for that BUT, I am still so jealous. I wish I could stop thinking about the what ifs and just forget about everything but it just seems impossible to do.
Connor will walk in just a few months, I feel like he is closer everyday but I wish he could be running like his cousins or peers. The doctors feel he SHOULD talk eventually but again, I wish he could let me know what is wrong instead of getting so upset that I cant understand his frustrations and cries. He babbles constantly and signs but sometimes he just needs more to get his point across.
The hardest thing to see is that he is so aware of the fact that he cant do something and I truly believe he knows he should be able to.
I noticed today that he TRIES so hard to form words but for some reason is unable to do so. He wanted so bad to say the word BLUE but all that came out of his perfect little mouth was MMMMLLL. I told him that was an amazing try and he will say the word blue sooner than he knows.
I never show him my jealousy of other kids because he is who he is and God would have had it no other way and neither would we at this point. I just hope as he grows up, things will become a little easier for him.

Thursday, December 3, 2009

Therapies that never where...

Apparently I am clearly doing something wrong here. C's doctors have faxed all of his prescriptions for each therapy needed to the proper places (twice I might add) and every time I call to confirm and hopefully make an appointment, I get the run around. I am at my wits end now.
Wish me luck as I attempt to call again right now.