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!!!

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.

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...

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.