Finding special time for my daughter

I schedule twice a week swimming and ballet for my daughter. My husband comes home from work and stays with Andy, so that I can take her to her classes. It has been hard to keep my daughter from being jealous from all the time that Andy requires. So, this gives us special time together. I am also having a hard time keeping her busy during Andy's therapy visits. It is best if she is in school, or doesn't have to go with us, but lately she does. She can only color for so long, before getting bored. We may have to invest in a DS or something. Ipod works for a little while, but she is only three. Next year, I will try to better get her school days coordinated with his office visits.

My family thinks Andy will be just fine and don't seem to be worried

He's okay, it will just take time. That's what they all think. Maybe I am just over worrying. I just continue to pray for Andy and for strength and patience. Worrying doesn't help anything, I know. We are doing everything we can to help him. We are seeing an orthotist in a couple of weeks. PT still hasn't tried to put him in any equipment yet. I would like her to try soon, and am trying to let her do things at her own pace, but what's the hold up??? She doesn't want him to become dependent on equipment she says, but he clearly needs it. He will be two in may and walking seems nowhere on the horizon.

Eye patching update

Andy's right eye still drifts a bit to the outside, both eyes used to drift equally. We started out with alternate eye patching for two hours a day. For example, patch the right eye on Monday for two hours, then the left eye on Tuesday for two hours then, Wednesday back to the right eye again. The left eye improved rapidly, and we hardly see drifting now. I took him in for a recheck, and at the time, I was constantly forgetting to patch his eye. I'd only do it maybe 4 times a week. They told me to now patch for the next 6 weeks, two days on his "good eye", then one day on the bad eye, bumping up to three hours a day.

I now keep a calendar right in the family room where we spend most of our time. It helps me to remember every single day, and I only forgot once, because we were gone from home all day long. It is also helpful to try and patch during set times, like 9am-noon. This is my favorite time to do it, because he finishes breakfast around 8:45, then put the patch on. If we have running around to do for the day, I wait until we get back home and patch from 3-6pm, or if I forget and remember late, I'll do it 7-9pm. I don't like to have his patch on when taking my daughter to school, or running up to a store, because everyone wants to know "Oh my, what happened to his eye?". Every time. So, I just like to do it at home and get it over with.

Doctor says he will probably eventually need surgery on his right eye, the bad eye, we are just waiting for him to stop favoring his left eye. When he demonstrates "equal use" of each eye, he could then get the surgery if we feel he needs it.  They told me the next time they see us in a couple of weeks they will probably up the hours on the patching of the bad eye.

24 Hour EEG Update

Both times when Andy has had electrodes put into his hair, prior to the 24 hour EEG, he did fine with the process of getting everything set up. He didn't fuss at all and seemed to enjoy the technicians messing with his hair and ears. But not this time. The smell of the permanent glue seemed to bother Andy, along with the sound of the air gun they were using to dry the gauze onto his head. The sound set him off big time and I tried to keep him calm with singing and toys while the technician tried to finish up. The whole last 15 minutes he was screaming everytime she used the air sprayer.






After that, keeping him entertained in the room wasn't too bad. I brought a suitcase full of toys, and I asked the medical assistant if they could bring in a high chair for him and that was really helpful for entertaining. Getting him to fall asleep in the hospital was HORRIBLE. He cried for three hours, before conking out. I would try to soothe him every 10 minutes, then in longer increments of waiting, but he was really pissed off and couldn't be calmed down. Then he got the kid next door screaming.

When he finally fell asleep at midnight, I had just fallen asleep when Andy started kicking like crazy in his sleep. He was making so much noise, I was surprised he didn't wake himself up. It was like he was running in his sleep, and his hospital metal crib was rattling like crazy. The nurse came into the room asking "what's going on", and I jumped up and said "I don't know". I didn't realize he kicked so much in his sleep. The nurse told me "you deserve the mother of the year award". It was nice to hear instead of the standard "I don't know how you do it", which we've all come to love hearing. We don't have a choice, if you're a committed mother anyway. Andy woke me up every hour or half hour with his crazy kicking. I would jump up off the couch and say "what the hell", then I'd realize it was just him.

The doctor wanted us to stay another night, but I said no way. I saw several of his staring spells when we were there and documented them, and they got to see him all night long sleeping. So, I felt that it should be enough data.  They actually got 30 hours of recorded data in on him before we were disconnected from the electrodes. He hated this too, and screamed as they were pulling them out of his hair. We then showered him off quickly, just to get rid of the smell of the solution they used. He conked out immediately after putting him in the stroller. The poor thing just wanted to go home.


My family was helpful during our stay at Henry Ford Hospital in West Bloomfield. They had a children's playroom for my daughter to play in, and my husband and I took turns taking her there and my mom did too. I also got to leave the room a few times to walk around in the hospitals indoor garden/atrium, while my mother-in-law watched Andy, which was really helpful. I even left the hospital while MIL watched him to go to Subway and come right back, we were only gone for 30 minutes.

It wasn't so bad with all the help from our family. The neurologist feels 98 percent sure that Andy isn't having any epileptic activity or irritations. Good to know. Another thing ruled out.

Seeing some progress with language at 21 months

Just this past week, I am seeing progress with my sons vocabulary. He was limited to mama and dada before, but has now started saying "up", "baby" and "poo-poo".  Sometimes, after he poops, he will say "poo-poo". Lately every time he goes, I repeat to him that he did a poo poo. It may have sunk in. I also ask him every time he is crying on the floor, "do you want me to pick you up"?. So now he is saying "up" after he has been frustrated for a minute, or when I come back in the room, he will say "up". Usually when he is done eating or done playing with a toy. I don't hear it every day, but we are still hearing him say these words every few days. It is so nice to see him moving forward with something. The gross motor and fine motor, no such luck, but this is very promising.

We are going in on  Monday for a 24-hour EEG to rule out any seizure activity.