"New Routine"

So, What have we been up to the past couple weeks? Just trying to get ourselves used to this hussle and bussle of juggling new schools for the kids (lots of new things actually)

Everyone has adjusted so well to the changes-Ryan and Stacy are really enjoying high school-other than getting up REALLY early, lol. They leave for the bus at 6:30 am...another change-that big yellow thing called a bus, they never did that before. What a big difference between middle school and high school! They are loving the freedom and especially the amazing kids at this school-all of them are so bright and want to be there learning. We are really happy, can you tell?

Samantha too is doing good-had some nervous first few days, but it doing great overall. She has learned the joy of homework (Not!) so that is keeping Mommy busy too. Her stress level from Connor is still pretty high, but at least she has an escape from that at school and thankfully her eye twitches have gone away.

Connor has had the most to get used to-a whole new routine everyday. He has been a trouper through it and stunned us with how good he is at school. He doesn't care much for the nap time, lol, but he does cooperate and lay still for the teacher. He has been twice now to the church school as well and it is going smoothly too. He gets pretty worried, but hangs in there.

The last trip to Atlanta for his infusion was a little scary-his port has been giving his nurse a little trouble twice now...if it is working properly it is supposed to give blood back (for bloodwork if needed) and it hasn't been. It eventually began working again, and next time she is going to try a larger needle to see if that does the trick (praying it does) or it might mean testing to see if it is malfunctioning. That would be bad-a new one would require surgery to replace it. But I have enough to worry about without imagining worst case scenarios-so I'm putting this one out of my head and trusting that it will resolve itself. Some prayers won't hurt either though, lol!

Things at home are about the same (mood wise for Connor) Sleeping better though and that has been awesome! Still wakes up once or twice, but he is able to get back to sleep quickly. Yesterday we saw the doctor to discuss how he is doing with all his raging and destruction and general "flying off the handle for no reason" and we are adding the old medicine Zyprexa back...really feel we have no choice-it has simply come down to a matter of safety for him and everyone else. He is too unpredictable and has no concept of being hurt-and that is a dangerous combination...In the past few weeks he has started a small fire when he cooked Ryan's wallet in the microwave. And burned up all Ryans money, took off countless times...in Walmart I let him out of the buggy for a minute because he was climbing out (seat belt didn't fit around him) and he took off and I could not catch him since I was slipping in my flip flops-thankfully a lady caught him for me...then he opened the door of the car while Sam was driving after he got out of the car seat! We had the door next to him child safety locked, but not the one far away from him. Now we do...Sam had to catch him by his leg while he was still driving...this was terrifying as you can imagine.

I am pretty speechless right now over it all, and this is just the big stuff-the smaller stuff is almost worse I think because it is constant. And the screaming is the worst part , it is all day long, happy one second, raging the next...he threw a wrench at my face and gave me a big bruise...

I am going tomorrow to get a handicapped sticker for my car. (Another thing I have been avoiding) We have always just "managed" with getting Connor to and from different places...we use the stroller a lot, carry him, get shopping carts from the parking lot to put him in, etc. But he is at a size now that it is getting harder-42 pounds is a lot of boy to carry, lol! He has about a week a month, usually right before IVIG, that he doesn't want to walk as much and chooses to crawl-not exactly a convenient way to get to and from places, huh? Also-he has such a hard time in crowds that he just cannot handle the stress of working our way into the school from the faraway parking lot with SO many kids and parents hurrying in along with us...it is a set-up for disaster for him-I guess his senses get overloaded by the noise and all the people and he just becomes a nervous wreck and that sets off more crying. I hope this helps him-at least he will be able to get into the school without having a breakdown or falling down.

As for me-school has been a true blessing to my sanity. I miss Connor while he is there-I feel almost physically ill at the thought of him there struggling, but I know it is the best thing for him. I am keeping myself busy-getting ready for a HUGE consignment sale I am involved with and next week I am going to start covering the morning shift at the restaurant some while my brother-in-law is in class. WOW-I get to be around grown-ups!

Something wonderful arrived for Samantha in the mail I want to tell you about. It was a letter from a little girl named Lia who is 9 years old. I am friends with her mother Patty on my on-line support group for OMS. Patty had asked me since Samantha is having such a hard time dealing with Connor's problems, if it would help if she got a letter from her little girl, who has been through very similar hard times with her brother Tony who has OMS. I hope Patty (and Lia) don't mind me posting this...it was so sweet and touching I wanted to share...in the envelope was a picture of Lia and her horse, and some beautiful things Lia made for Sami.

Dear Samantha,
Hi, my name is Lia and I'm 9 years old. My favorite sport is horse back riding! And I have my own pony named Simba! I live in Illinois. I have 2 brothers and a dog. My 2 brothers are Tony and Sam. Sam is 5 and Tony is 7. Tony has OMS just like your brother Connor. Because he has OMS he always drives me crazy. Tony always hits and screams and talks too much. I sometimes lock myself in my room too to get away from him. But my dog Koby always makes me happy! Your brother can't help it. It will get better I promise.
Love, Lia

Needless to say-I was reduced to tears...happy ones! What a giving and beautiful thing for one child to do for another. We are so blessed. Thanks Patty and especially Lia, Samantha was thrilled beyond words and has turned the letter and gifts into a poster to hang in her room.

Love to all,
Debbie

July Pics...

We had some fun while dealing with the happenings with Connor at least. We went to Orlando and enjoyed Universal Studios, Downtown Disney, and the drove over to Cocoa Beach...did some shopping at the outlets there, and took some down-time from the dreaded word stress, lol. The kids had fun most everywhere, although Connor stayed in his stroller for most of it. Here you go:












All for now, more to come!
Love,
Debbie

Here's The Plan!

Me & Sam have been changing our minds left and right over what is best for Connor for this next year...I think we have finally figured it out, lol. The Pediatria place is off our list, it just didn't seem stimulating enough for him-looked like he was going to be hanging out in the baby room quite a bit with lots of babies with g-tubes...I could just see him yanking one of their tubies out or just being left on his own a bunch....

So, we are going ahead and letting him start the special needs class in the public school system. His teacher is very nice and we even found out that one of my friends kids named Amanda who has downs syndrome will be in there too! I volunteered to be the room mom, lol, so it should be a fun year. His first day is next Friday. I don't know HOW Connor will react when I leave him poor thing...PRAY!

I also got him in at Samantha's old preschool for Tuesday and Thursdays from 9 to 1pm. This will be amazing for him there since there are typical developed kids for him to be around. Only catch there is he is going to need to have an aide with him there specially for him...so we have to pay quite a bit more to get him a helper...he is only the 2nd child to do this at the school-so it is new territory for everyone.

Thanks for all the messages and calls to check on us, sorry we have been out of touch, just been trying to get a handle on life lately. The new medicine has helped tremendously with Connor's behavior. It has not been easy, but he is much better than he was before. Samantha is less stressed as well. He has been a busy boy going to speech therapy A LOT, lol, and it has been so wonderful to see how far he has come in such a short time-not so much with talking, but his understanding is improving greatly.

Ryan and Stacy are finally home thank goodness! They start high school on Thursday...I am nervous for them, and excited too, to see how it goes this year. This will be a time of lots of changes for all of us with Connor going to school for the first time ever! At two schools no less :-)

I'll try not to be so long with updates, love to all.

Debbie


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