Thursday, March 29, 2012


We have wondered whether or not Sam is having seizures ever since his "abnormal" EEG. The report says the abnormal activity could be partial complex seizures. To get more conclusive information we would have to do an inpatient EEG with video. Since Sam would likely tear off his own flesh to remove the wires, we haven't done that yet.

A while back, when Sam went through a phase during which he flipped otu if I wasn't in his bed, I noticed some strange mouth movements when he was sleeping. When he started coming into our room in the middle of the night we saw these movements again. It is kind of like a sucking/chewing/lipsmacking motion that happens repeatedly throughout the night. I mentioned it to the various neurologists and they said the only way to know if it was seizure related was to do that inpatient EEG but neither of them seemed in a rush to do that.

Recently, Sam began to make foam in his mouth during this motion. We have twice seen a big gob of foam on his mouth in his sleep. I called and he has asked us to try to film it so he can get a look at it. I got a picture of the foam the other day but the motion had stopped by the time I got my Flip cam. So, we will keep watch and try to get it recorded. And I have a feeling we may have to do that inpatient EEG at some point in the near future.

Sunday, March 25, 2012

Read and respond

Read this story and then PLEASE send an email. What if your child were denied the right to use his legs in school? Or maybe forced to tie her arm behind her back? What if my son were not allowed to use his augmentation communication device (which would be like putting a gag on a typical child. )

Thursday, March 8, 2012

Hannah was born a year ago tomorrow. She nearly came six weeks earlier when I broke my arm in three places and almost went into early labor. I exhaled when the doctor said, "It's a girl!" As you can see from the picture I still had a cast on my arm. Getting her in and out of the hospital bassinet was not always easy! She nursed right away without issue and she cried when they took her away from me to clean her up and check her out.

Here she is wearing the booties I knit her. They were the best!

She loves to watch her sister.

Big bright blue eyes.

Lucky for us there are 3 spots on the swingset!
The ipad is a big hit in our house. Sam is learning Proloquo2go, Maya loves games, and Hannah like to try to copy both of them. I think this would make a great poster for Apple.


Big smile.

We still spend a lot of time like this. Early on we used the Moby wrap and now we use the Ergo carrier. She can't settle down to nap with the constant Sam noise so when she looks like she is fading, I put her in the carrier to nap.

Happy Birthday!

Sunday, March 4, 2012

Losing my Bed

We have learned some things over the last few months. I took Sam to a new neurologist because his ups and downs over the course of a day were so frustrating and he stopped sleeping again. We attempted a new EEG - BIG FAIL. Sam will have to be sedated if he ever has another one. And since he will also have to be sedated if he ever has his teeth properly cleaned I am hoping we can just make a list of all the things that need to be done and coordinate doctors and dentists for one big party in the hospital. WHat are the chances that will work???

We tried different meds. MASSIVE FAILURE. We also tried cutting meds which was also a failure. Sam's behaviors got to the point where the school had to send me restraint paperwork because his tantrums were so bad they were afraid he might get hurt as they tried to stop him from hurting others or breaking things. He caused some pretty major destruction in the home as well. I starting reading about residential placement - and then hated myself.

I got some ABA hours covered by insurance. They were already a covered service but there were no in-network providers when I first looked into it. Now there is someone local and he gets taken to art and music therapy as well as special needs swimming. Sam doesn't give a hoot about art but it gets him out and since he like ot be on the go, it helps.

We went back to the main med Sam was on before only in a different form (tablet instead of liquid) and a once a day dosage instead of twice. Sma is a much happier camper. He is no less hyper and he still causes damage with his constant dropping and throwing but the aggrssive tantrums are down quite a bit.

In this whole adventure I lost my bed. Sam has been fixated on sleeping a chunk of the night in our bed. For the last couple of years I have done the "right" thing and put him back in his room each time he tries. Usually this meant a few sleepless nights putting him back again and again until he got the idea. Then a few weeks later I would have to repeat the process. THis is the dirty secret of behaviorism - beating the behavior is only temporary. You may never win the battle. WHen Sam was really bad in the fall, he smashed his closet door, broke it and then threw it out the door at me. He is not the incredible hulk - it was one of thoose Ikea frestanding wardrobes (his room has not build in closet). But that was the end of putting him back in his room. He realized his strength and now he does try to kick through his real door (and I think he could if he wanted to). His school wants me to strip his room of everything but a mattress so he can be contained in there but that idea assumes that there is room somewhere else in the house to put everything and there is not. Also, when he is worked up I cannot transport him to his room so it is a silly idea. Now Sam comes to out bed sometime between 11:30 and 12:30 and I go to his with the baby. Unless he has wet the bed and then we get the couch downstairs.

We are very glad to have a happier Sam back but we are still at a loss as to what to do next. His behaviors, while not aggressive, are still very destructive and impossible to manage despite the help of a team of home therapists.