Friday, June 22, 2012

Scheduling time for fun

Being that summer just started, I am trying to make sure the kids have a spot each day to have fun with me. I've been trying to do more laundry at night, and the dishes at night, so I don't feel overwhelmed with housework during the day. I am very tired when it is time to go to bed, but it helps me to sleep soundly through the night.

The last few days, after Andy's nap, I stop what I'm doing and we get in the pool or play on the floor. I feel that I need to show Andy some fun each day, he is so easily frustrated. It seems to be helping him maintain a good mood. It is hard to set aside the time that is needed for everything to get done, meanwhile, keeping the kids happy too.

I feel happy when I honestly feel that we had a really good day, and both kids know how much I love them. Then add in the husband too, and that's a lot of moving and shaking. I have to be very thoughtful and mindful of everyone and their feelings. It's a lot to take on!

Monday, June 18, 2012

Risperdal update

The Risperdal (Risperdone) seems to be working pretty well for Andy now. He seems to need to stay around .25ml in the morning to not be too drowsy during the day. If I give it to him at night, he seems to have difficulty sleeping through the night. I tried weaning him down to half his usual dose, down to .125ml, but after a week of this the crankiness and inconsolable crying was back in full swing. He would get worse and worse each day that I continued the .125ml, so I went right back up to .25ml. His nurse said I could try giving him .125ml in the morning and .125ml before bed, but I am worried the bedtime dose will affect his sleep. So, I'm sticking with just the morning dose for now.

Now, I am confident that he won't be crying all day at school, and inconsolable to the staff. I still need to purchase him a soft helmet though. I am worried that if he gets mad if he's on the floor at school, that he will bang his head backwards onto the floor. I place pillows behind him at home, but can't expect that there. They should have him in a chair, but if he starts being able to do other things on his own, I'm not so sure.

Sunday, June 17, 2012

Need to get VEP done ASAP

My head is spinning, there is so much to do all of a sudden. Andrew has had exoptropia in both eyes since 9 months old or so. This means his eyes drift to the outside (lazy eye). It is a type of strabismus. When the eyes drift inwards, towards the nose, it is called esotropia. Exotropia, is when the eye drifts outwardly, away from his nose. Andy's right eye mainly, drifts way out, but he can pull it back in when I ask for his attention.

In a nutshell, an optometrist told us that our son is very near being legally blind. However, three different opthalmologists have told us our son can see pretty well. He doesn't require near or far correction, but the astygmatism in each eye is probably keeping him from seeing clearly. He believes his vision might have him seeing just out of focus. The latest opinion doctor also suggested that children with neurological abnormalities often have trouble focusing. A pair of glasses has been suggested to see if Andy will "appreciate" the better vision, but I don't need to fight him on wearing the glasses. Okay...

So, then I took Andy to see a second opinion Physical Medicine and Rehabilitation doctor (PMR). He was great. He is also a top vision person, and says that vision, neurology and physical medicine all overlap. He asks me, "Can he see? Do we know if he can see?" I tell him about all the eye doctors and the varying opinions. He tells me to end this once and for all and get a visual evoke potential (VEP) done on Andy right away. I agree. I tell him, "no one has ever said this to me, ever".  I am so happy I went through with an umpteenth opinion.

Now I'm scared of what a VEP can find, one of the majors being cancer that causes a lazy eye. But I am ready to get this scheduled right away, and fear of the unknown won't stop me. The PMR also suggested going ahead and getting the custom made shoes for his afos, and also getting new spinal and hip xrays. I agree with everything.

It is nice to finally be talking to a doctor that seems to be on the same page as me. He is also very available for me to reach him. I am very thankful his school PT told me about him, and that I decided to listen.

Stay strong-


Monday, June 4, 2012

Excited words

I was feeding Andy today, and he got really excited and tried so hard and said "mama, ungee". I took it as  "mama hungry", so I said "yes, mama hungie! Very good Andy!" I feel that saying words the way Andy can say them is okay. Him being able to pronounce the "r" sound right now is crazy, and who cares anyway? My little one is finally trying to verbally communicate with me! It's so awesome, and Gabby is so excited too. 

My husband also noted that it seems he is moving his tongue around in his mouth more. I looked and noticed it too. He's really lifting it up and shifting it around. Probably good exercises to help allow him to talk. I tried to encourage him to stick out his tongue, which he found to be funny, but wouldn't imitate. 

I also heard him on the monitor after his nap, babbling in the tune of the alphabet song. So, I ran into his room and sang the ABC song to him. He had a huge smile on his face. 

I think Andy is excited as well, to see us get so excited about his speaking. He also seems to be happy to see that we can understand him. I'm hoping that this keeps building his motivation to speak, or attempt to make sounds.