Appointments galore

 

 

We have been on the post benefit high for the past two weeks. Life has been great. We feel so blessed to have received the enourmous amount of support from our friends, family, and community. For those interested...we still have Team Logan t-shirts and wrist bands. We are selling them for $5.00 a pair. Email me at rbyrne4@hotmail.com if you are interested.

Now back to Logan updating. All in all, Logan has been doing great. He is healthy and seems to be in a great groove right now. He has had a few doctors appointments over the past couple of weeks with a couple of adjustments, mostly to medications.

He has remained on the Sinemet. This is the medication we are using to try and slow down his excessive movements. We have increased the dose twice with no change. We have also placed him on a medication to help him sleep at night.

I thought long and hard before asking his doctor for a sleep aide. Logan does not sleep well at night. We have been trying melatonin and the nurses have been working really hard to stay on top of his secretions so he does not wake up. Unfortunately everything we try is unsuccessful.

A normal night's sleep for Logan is: to bed at 8:30pm, awake between 10:30 and 12:30, back to sleep after some restlesness until between 2:30 and 4:30 when he can be up and down for a couple of hours. He will then sleep in until about 8:00am if it was a rough night. Most of his problems during sleep are startling awake and waking due to secretions in his trach. It is so frustrating. He is two years old and needs sleep. We all need sleep. How would we thrive and stay healthy if we didn't.

So I decided to ask his neurologist for help and he offered to prescribe clonazepam. This is an anti-anxiety/muscle relaxing medication. We pray this will work. Hopefully we will see a more rested child during the day that is more interested in interacting with us.

Logan has an MRI set up the first week of April. This is a hard test for me as he has to be sedated which brings its own list of worries, much less now that he has a tracheostomy. He has a permanent airway and does not require intubation for procedures. It is pretty slick!

I also worry what the results will bring. Each time he has a test it is never easy. We wait for results and almost every time we are told that everything appears normal. I don't want abnormal test results, but at the same time, want some clues to shed light on what is causing our child's delays. I just want an answer.

He also saw the physiatrist. This is the doctor that watches over his physical development. He had an xray of his hips and they look great. No problems with where the ball and socket meet together. Everything is aligned well. This needs to be monitored as Logan is still not weight bearing for the most part so he is more likely to have hip problems.

The rest of his body is developing well in general and I say this as comparison to Logan's own growth chart. He is on a path of his own and he continues to gain weight and grow taller as the days pass. He is also starting to gain strength and endurance. He did get fitted for AFO's (ankle, foot, orthotics). These will go from just under the foot, wrap up under the heel and up the back of the calf. The braces will be used when we are working on standing exercises for Logan.

I spoke with the genetic counselor this week to get an update on Logan's DNA testing that is in progress. He is having exome sequencing performed that will look at thousands of genetic abnormalities that are known to science. If you would like a better understanding of this, visit http://ambrygen.com/exome-sequencing. This is the lab performing the test. We were expecting the first round of results in May. We had sent the blood samples last October. I am being told that we will experience a delay due to the high demand of this newer frontier of genetic testing. It is frustrating but this isn't our first rodeo!

Last of the big appointments will be Mayo Clinic in May. He will see the pediatric neurologist that we saw when he was about nine months old. Our neurologist would like us to see her as he feels she is the specialist to help us evaluate and treat his movement disorder.

This spring will be busy and we can't wait! It means Logan will be able to go on walks, go to the park, and smell the roses! Maybe some day trips to visit family. I have high hopes for this spring and know that we will spend as much time as possible exploring with Logan.