Hello family, friends, new friends and people we do not know yet but have been praying for our Brayden.
The past several weeks have been a bit of a roller coaster ride and I will try to be brief about all of the events. We went on vacation, which was wonderful. Before we left for vacation, Brayden's seizures were happening several times a day. Being on vacation, out of his normal environment, seem to bring on more seizures. We talked to the neurologist and we increased the dose of medication. Over the next couple of weeks, the seizures have not decreased. Brayden had an appointment with the neurologist yesterday. The neurologist spoke to several issues.
First, we are increasing the dose of medication from 2 times a day to 3 times a day. Hopefully we will see some improvement.
Second, she said that Brayden has a less than 50% chance of ever being completely seizure free. The seizures will just be controlled. Controlled could be one seizure a day, a week, a month, it just depends upon him.
Third, after looking over Brayden there is concern about his muscle tone being too tight, especially in his legs. This means, we should expect difficulty with Brayden’s ability to walk. Brayden has very little head control, basically the amount of control a newborn or one month baby would have and he is now 4 months old. The neurologist wants Brayden to start physical therapy along with occupational therapy.
Lastly, Brayden is growing, eating and sleeping well, which means that his brain has the best opportunity to grow and develop.
The long awaited MRI will give a picture and better understanding of Brayden's brain abnormalities and possible disabilities. We will talk with the neurologist after the MRI, over the phone, and have an office visit a couple of weeks following the MRI.
Brayden went to a pediatric ophthalmologist last week. There has been concern about his vision. He is not making much eye contact and still not tracking. The ophthalmologist found that his optic nerve (the eye's communication to the brain) is smaller and paler than it should be. As for what it could mean, we really do not know yet. Brayden will be spending quality time with the ophthalmologist over the next several months. The ophthalmologist ordered Brayden’s MRI to also take pictures of the optic nerve so that she could get a better picture. Brayden is seeing something. At the visit, he was able to look and focus a little on the drum (a black and white cylinder that spins).
Next week, Brayden will have his 4 month old visit with his pediatrician. His MRI is August 31.
Please pray that we can find the best care for Brayden and seizures to be controlled. Please pray for us to have a calm heart. Each doctor visit seems to come with more news and struggles that Brayden is facing. It is nice to know what we may be dealing with and how we can start doing things for him but it is still hard to hear.
Again, thank to everyone for praying.
Carrie Jenkins for
Jeremy, Carter, Luke and Brayden