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...

The paranoid woman...

Connor's chromosomal condition still confuses me more than words can describe. Instead of a syndrome we have a list of could be's, maybes, no's and yeses. I understand my role as his mother and I know that I need to do some things to check the list of maybe's each year. This is all fine to me but why cant I find any info on the internet or from his doctors at that regrading his specific deletion?

Today I decided to look up Connor's chromosomal translocation to see if that led me anywhere. Well, it did. Straight to leukemia. Now I am paranoid and think it might be a possibility that he could be at a higher risk due to the 12,21 translocation. Connor is relatively tiny for his age (due to missing genes) and does not grow very quickly. I wrote his genetics doctor explaining that yes I am over protective and yes I can be a bit paranoid at times but is this something I need to be worried about? I hope they don't think of me as being a freak or anything.

If I had some answers that better explained this whole situation, I might not be such a nervous wreck all the time.

ACK!

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.

Time to say Bye Bye...

We will be losing Connor's current physical therapist next week. He has been seeing Connor twice a week for about a year now.

Connor simply adores Darren. If you even mention his name he goes crawling into the living room to look for him and quietly sits by the door to wait for him.

I know he does not understand that we will be losing him but we are trying to explain that Darren has to go bye bye and we will start going to the hospital for out patient services. I am sure once we get to the new therapists office he wont care. They have toys, what can be better than that.

I just feel so bad that Darren will not be able to see Connor actually walk across the room. He is the one that got Connor this far in the first place.

When he started seeing Connor last year in April, he categorized him at being at a 4-5 month level physically. He has since taught him to roll, crawl, pull up and now take steps. He is now at a 11-12 month level physically. WOW, that is amazing to me in less than a year to get him so far. Now if we can get him to a 22 month level all will be perfect.

Connor will be seeing his new therapist as long as the insurance allows which is 20 sessions. Once we expire those, we will go back to the Regional Center and cross our fingers that we will be able to get back Darren.

I wish I could write the state of California a letter stating how horrible I think there budget cuts are and that they should have re-thought where to make the cuts. This has been such a long process for us setting up three therapies through the insurance just to have the regional center pick him up once again after insurance is up.

Oh well, what ever is best for my son is what I am going to do.

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.