Sunday, September 26, 2010

Glasses, AFOs, and Horses

Last week Mikan had an appointment with his eye doctor. We received some good news for now: Mikan's eyes are stable. This means they haven't worsened for the first time since he's had them checked (weekly in the NICU and bianually since we've been home). Although his prescription is hefty (-10 and -11), his glasses appear to correct this deficiency and hopefully his development isn't too hindered by it.

We also had an appointment to fit Mikan to his new AFOs that he will wear at night to help him stretch out his feet for walking. We waited an hour for an orthotist to add "something" to his braces. When the braces were finally brought into our waiting room, the orthotist fitting him noticed that the device that had been added was incorrect. It was designed for kids with the opposite problem of Mikan. Instead of making it impossible to point his toes, it makes it impossible for him to flatten his feet. The extra device was removed, but the brace itself has a hole in the back that weakens the function Mikan needs. We are using them while the new braces are being made. They have pictures of Elmo on them that we hoped would encourage Mikan to wear them.

I can't say Mikan has fallen in love with his new "Elmo shoes" yet. He allows us to put them on him, but after about 1-2 hours of sleep, he will wake up crying and clawing at them. He appears to have muscle cramps. They don't look comfortable to me, so I don't blame him for being upset. I'm not sure how we are going to make it through a night right now. We've been losing a lot of sleep just to "practice" with them for a few hours at a time. Mikan's oximeter probe doesn't read well while he wears them either, so the alarming machine is another disturbance at night. I think they are his first negative association with Elmo.

On a positive note, Mikan has really grown to love his therapeutic horseback riding lessons. His PT thinks they are helping with his core strength and standing/walking ability. It's pretty impressive to see how well he is doing considering how terrified he was of the horse a few months ago.

Monday, September 20, 2010

iPad Demo

Mikan enjoys using the Voice4u app on the iPad. He's still in the experimental stage, but we are amazed at how he's already learned to manipulate the menus. He also knows that if he wants something that we don't understand, he can use his iPad to communicate it.

You may need to turn up your volume to hear all of the sounds.

Thursday, September 16, 2010

Neurology Results

Well the verdict is in: Mikan has...nothing wrong with his brain that would prevent him from walking. His MRI was normal. His bloodwork was normal. The sleep-deprived EEG was normal. He only needs "agressive therapy." We are pleased with and grateful for this outcome. He will be fitted for his AFOs early next week, so we are hoping these will make a difference.

His neurologist did reccommend that he get his tonsils and adnoids removed. She said his sleep study revealed abnormal apnea for his age (7.1 disturbances per hour when the average for a child is 1.5 and an adult 5). We will talk to his ENT about this when we see her in November. Unfortunately, this means Mikan has a potential trifecta of surgeries looming: t&a, ear tubes, and stoma revision. I'm not sure if these can be performed at the same time or not.

Mikan went to Grandma and Grandpa's house this week to check out their pumpkin patch. He had to touch all of the pumpkins and sit on them to determine which one he would pick this weekend. He's got a system.

Sunday, September 12, 2010

Cross Country Runner?

Last weekend Mikan attended a football tailgate at the high school we work at. Some elementary and middle school kids who were also at the tailgate followed him while he ran around in his walker. The walker draws a lot of attention from most kids and toddlers we see. John and I overheard one of the kids say, "He's going to win all of his cross country races because people will feel bad if they pass him!" Oh kids.

On the subject of walking...Mikan goes to Ft. Wayne this week for a sleep-deprived EEG and follow-up visit with his neurologist to review all of his test results over the last few months and develop a plan for him. On the night before his EEG, we have to keep him awake til midnight. The next morning we wake him up at 4 and take him to the doctor to get hooked up to a labryinth of probes and try to rock him to sleep again in their office.

Baby number 2 is still right where he/she needs to be. I'm 26 weeks and being monitored weekly. If anything changes (I begin contracting, my cervix shortens, etc.), I will either go on bedrest at home or the hospital. Right now I am enjoying the freedom of not lying in bed all day. Ultrasounds suggest this baby is bigger than Mikan was already, so we're hoping this is a sign of good things to come.

"Get away from my walker!"

Monday, September 6, 2010

Labor Day without Labor...Bedrest Checklist

Wednesday will be 25 weeks and 3 days. That is when Mikan's water broke. Dr.'s appointment tomorrow and hopefully no orders of bed rest. We really should get our stuff around to be ready for when that time comes. So here I am going to make a list of things we should have in place waiting for hospital bed rest to be ordered.

1.) Books for Jenna's Enterainment
2.) Snacks for Jenna's Nourishment
3.) A sub plan to buy me some time at school (make copies of a Dog Evolution Video Questionairre)
4.) List of Possible Babysitter's: Grandma G., R.S.,
5.) Stay on top of Laundry.
6.) ______________

Any other ideas of things we can do to be prepared?

Hopefully, preparedness is the real stitch that keeps the cervix competent.