Prayers Have Been Answered

After 5 long months, Tony received the call he has been waiting to hear “we would like to extend you an offer for employment!” He is thrilled. He starts back into the working world on July 13th. The drive is a bit longer than what he was doing before, but like we said its a job. And his hours should be 7 – 3:30 so he will miss the traffic on both directions AND be home in time for supper with Tyler. It is so nice to have my happy, joyful husband back. I know this time has been extremely frustrating and I do not blame him one bit for feeling the way he has. So now he has 3 weeks to enjoy being home, enjoy playing with Tyler, and just relax. Thank you everyone for sending thoughts and prayers that he would find something. Someone was certainly listening

My Preschool Graduate

It is with mixed emotions that I post this blog today. Yesterday my baby graduated preschool! 2.5 years ago we were scared to death putting him in the public school. We had so many fears: would he be able to nap, will they know what he wants, will children play with him, will adults accept him for who he is, will he be snuggled if he cries, will he learn things like communication and motor skills, will be be accepted? Well we can whole heartidly answer “YES” to all of those questions. We couldn’t have been more fortunate to have found this teacher and this school system. Granted, we have had a number of disagreements but all in all, it has been a wonderful experience.

And now I sit here facing the same anxiety for the upcoming school year. Tyler will be secluded as mainstream Kindergarten just isn’t what he needs or will excel in. So now my fears are, will he realize he is alone, will he have the opportunity to play with typical peers, will he continue to grow and learn, will he still be accepted for who he is, will he resent us for not mixing him in with typical kids, is this the right program or should we be exploring other options? These are all things that I will have to stew over until he starts this program and we see how he handles it. Until then, I am glowing in the fact that my baby graduated preschool. My baby who wasn’t supposed to talk, walk, eat, roll over, survive really, has a diploma hanging on his wall. My baby has proved so many people wrong and continues to do so. My baby, walked to “Pomp and Circumstance” to receive his diploma. My baby is heading into Kindergarten. Where in the world has time gone?? I couldn’t be any more proud than I am today!

Before heading to school

Performance

Marching to "Pomp and Circumstance"

Receiving his diploma

Proud Mumma

Total Ignorance

As mentioned, Tyler was started on an anti-seizure medicine, Trileptal, 2 weeks ago. After the first week we noticed a definite interruption of his sleep during the night and also some issues with going to the bathroom. I read all the side effects, including on line where there were personal testimonies and these 2 are side effects experienced by many people on this medication. So I called the doctor on Monday. His nurse was out but asked for a full detailed message, of which I gave her.

Yesterday I receive the return phone call from the nurse. I am fully expecting to be sent in for blood work as this medication can lower sodium levels. She says to me that she wasn’t familiar with either the interrupted sleep or the digestive issues being side effects but she did say that wasn’t to say they weren’t. She continues to say it sounded more like an intestinal bug and that we should call the pediatrician rather than the neurologist. Hope your all seated as this is the best part of the conversation:

Nurse: ” As for the interrupted sleep, you should keep him on his normal routine no naps and lots of exercise.”

Me: “Well naps are part of his routine. He doesn’t take them daily but he does take them when he is tired.”

Nurse: “What 5 year old takes a nap? That is only asking for behavioral issues. Have him ride his bike or run around, with a buddy of course to make sure he doesn’t get hurt.”

ME: “If I could have him do those things I would but you see he doesn’t walk, let alone run so that will make it difficult.”

Nurse: “Oh. Call your pediatrician for the virus and I will ask the on call doctor if she has heard of these 2 things being side effects. If she thinks differently, I will call you but please call back with the recommendation from the pediatrician.”

ME: “Sure” with a COMPLETE hint of sarcasm in my voice.

Ok, so this is the first time I have spoken with the nurse, since we just switched to this neurologist in May. BUT, shouldn’t she scan his chart quickly before calling back?? She claimed to have had it in front of her and that she was reading the doctors note. Well if she read the first paragraph of the doctor’s note, she would have had his FULL description of his medical history including the fact that he is non verbal, non ambulatory, legally blind, etc etc.

I just can’t believe that was the converstation I had yesterday. I still can’t wrap my mind around this. So in 3 months, I have encountered 2 bothersome situations from one of the best hospitals in the country. Not making me very happy AT ALL!

Last night was no different with Tyler tossing and turning around 4AM. So this morning as he happily ate his english muffin, I said he needed to ride his bike more today so he along with Mumma could get a full nights sleep…too which he laughed and gave me a big smile that always melts my heart! If only his smile could make everything right!

The Perfect Therapy

DesiComments.com | Hugs | Forward this Picture

I couldn’t have put this ANY better! Yesterday I was not having a good day. I woke up grouchy which I TOTALLY hate doing. And a couple times yesterday while carrying Tyler and once when I was snuggling with him, he gave me a hug. He really squeezed me! It was like he knew. So I of course gave him a hug back which in turn lead to another hug. He likes deep pressure so hugs are perfect therapy for him…and a sad Mumma