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.

A big boy now...

Connor has therapy several times a week and on Thursdays we find ourselves there for hours.  It is by far his favorite day of therapy so I am sure he doesn't mind the long sessions.
Today was a big day for Connor.  He was able to climb the stairs holding onto just one hand of the therapist and he practiced walking on a balance beam.  As his therapist came out to tell me all of this good progress she also mentioned to me that she now believes he can be classified in the 15-18 month category physically.
This is amazing news.  Six months ago he was 12-15 months.  He is beginning to progress quickly.
I am a very proud mommy.

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!!!

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.

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.

Kidneys...

Turns out my worry was for nothing. Connor's kidneys are A-OK. I guess we just have an very thristy little man who needs to drink all the time.
I am assuming the kidney ultra sound will be a yearly thing as is most of his tests will be.
I still have yet to make the appointment for the cardiologist or the urologist. I best be making those soon.
I now have to find a new physical, occupational and speech therapist for Connor. With all the budget cuts, the state now makes us go through the insurance first use all those appointments up and then go back to the state.
LAME.

Vent Away

So I cant stop thinking about the "what if's" and they happen to be driving me batty.
What if Connor's peditrician had noticed the ridge in his forehead sooner? I noticed it pretty much at birth (they think his sutures were already closed then) but I didnt think anything of it because I didnt know it was something to be concerned about. Would Connor's brain NOT be underdeveloped if we had noticed sooner?
What if we had gotten Con into the Regional Center at an earlier age? Would he be making even more progress?
What if I had done something differently? Maybe I was too old to have a child? Did I cause this chromosome to be missing?
I cant find any support groups out there to help ease my mind and everyone around me seems to think he is just fine. I KNOW he is fine but at the same time, he needs lots of help and work just to do what other 17 and 18 month old children do on there own and even then, he cant really do them.
He was saying a few words a few months ago and those seem to be foreign to him now. He does pick up words here and there but, will they leave his vocabulary?
What does it mean when they say his brain is underdeveloped? I assume there is no damage so then-FIX IT! Develope that brain.
What if Connor gets teased? What will I do? I cant tell that child to stop. I cant talk to his/her parents but that is about it. All I can do is tell my child that he is absolutly the way he should be.
What if I didnt worry so much?

The breakdown of our son Connor

We finally had our long awaited appointment today with Dr. G. It was a VERY long appointment with lots of questions asked, lots of information given and lots of questions still unanswered.
We got to our appointment at 130 and was seen right away only to have the doctor leave again for an hour to review Connor's MRI and CT scans. Once he returned poor C had fallen asleep. It was perfect because we got all of the questions out of the way before Connor was examined.
From what we gathered, Connor's condition is so rare that he could not find one case that matched Connor's exactly. Instead what he did was researched those closest to him and compared that way. Now that he has seen Connor he will now research Connor's specific symptoms and right a report for us in the next few weeks with all the research he has found.
From our questions and his information this is what we found out today-
Connor's frontal brain is underdeveloped but Dr. G feels confident that he will compensate eventually. This might be why he is physically delayed. It has nothing to do with the sutures closing too early (all of these "issues" are all caused by his chromosomal deletion).
He no longer seems to feel Connor will need surgery on his skull. Connor's brain is almost done developing and it has never been a concern due to his premature closure of the sutures. He feels that they were probably closed upon birth. The ridge in his forehead should not grow anymore but, if we feel it is we will be referred immediately to a specialist.
His new concern seems to be the thumbs. We see an orthopedic doctor every few months but he wants to see a hand specialist and make sure he doesn't have something called Clasp Thumb Condition.
Connor will probably be in some sort of special education classes growing up but because we are already part of the Regional Center, he is already on the right track getting extra help to help in in his development.
There is a 50/50 chance that Connor will pass this onto his own children and even though our blood showed that we did not pass it onto Con, there is a chance that something went wrong in the "creation" of Connor that it could happen again so we have decided it would be best to have just one wonderful child.
We will be getting a kidney and abdomen ultrasound on C because in the other cases that were similar to him, there were some children with kidney problems. They will also be looking at his testicles as they have not dropped yet and seem underdeveloped.
He will also get an echo cardiogram to rule out heart conditions. His heart sounds wonderful but because other children have had heart problems we must make sure.
These will probably be yearly things for Connor growing up.
Dr. G will be looking up each problem Connor is facing in his database to make sure it is all correlated to the missing piece of Chromosome 21.
Even though 21 has moved and attached itself to Chromosome 12, he is not concerned at all with 12. He will also be doing more research to find out exactly what all 30 or so genes that Connor is missing do.
To help further his progress and hopefully help in out for when he is ready for school , we will be starting speech and occupational therapy in the near future.
We will be seeing Dr. G again in one year. But he will be in contact with us periodically as he gathers new information.
It was a great appointment. It is just hard to not really know exactly what will happen with his future but it is great to know that technology gets better and better with time.