Neurosurgeon Appointment

We took Graham to see a neurosurgeon at Duke on Wednesday. In short, he has cervical stenosis and dysplasia of the skull base and will most likely need surgery at some point but they want to wait until he is older. His bones are still growing and developing and babies do not tolerate the surgery well. It is another wait as long as we can as long as he is doing well kind of game, except this time we could be waiting several years. We will take him in for periodic MRIs and watch for symptoms such as loss of use or movement of arms and legs. General anesthesia is risky for Graham because while asleep his head could move too far back and cause problems. (Of course we didn't know this the last 3 times he went under anesthesia. Thank you, Lord, for protecting him!) The doctor thinks that they can do this new quick scan MRI that only takes 2 minutes, so Graham will not have be sedated. Hopefully they will be able to get the picture they need this way. We take him back in 3 months (August 20) for this quick MRI and a check-up with the neurosurgeon.

The doctor said he is not in any immediate danger. We should go about life as usual. It is possible that as he grows things could improve but the doctor seemed to think it is unlikely that it would completely go away. But we are praying that the Lord would heal his spine and heal his eyes and that he would protect him daily.

Here are some of the MRI pictures.

 If you look closely you can see an arrow point to the top of the
spinal column and you can see the narrowing of the spinal cord.

In this first picture you can see the white area surrounding a gray circle. That is the spinal cord where it is not pinched. In the second picture you can see that the spinal cord is pinched.

MRI Results

The MRI went well on Thursday. Graham was mostly content while waiting without eating (b/c he went under general anesthesia). He was only away from us for an hour and a half. He did fine with the anesthesia, woke up quickly, and ate as soon as we got to see him. We left the hospital by 11:45am. Praise the Lord that everything went smoothly.

Late Thursday Thursday afternoon the ophthalmologist called with the preliminary results. The MRI showed that Graham's spine is narrow at the very top, at the C1 vertebrae, and is compressing the spinal cord. In technical terms, "Hypoplastic posterior arch of C1 with severe central canal stenosis and cord compression." The MRI also showed fluid in the middle ear, an ear infection. The ophthalmologist said the findings needed to be seen by a neurosurgeon and didn't really explain the nystagmus (bouncy eyes).  I took Graham to the pediatrician on Friday to discuss what to do next. The pediatrician diagnosed the ear infection and wrote a prescription for an antibiotic. He also said we needed to make an appointment to be seen by a neurosurgeon at Duke this coming week. Neither the ophthalmologist nor the pediatrician knew what to make of the MRI results. The pediatrician said that with the what the MRI showed, Graham should have trouble moving his arms and legs, but that is not the case.

I was unable to make an appointment on Friday, so hopefully I can get an appointment made tomorrow (Monday). We should know a lot more once Graham sees a neurosurgeon. Please continue to keep Graham in your prayers.

My First Mother's Day

I feel so blessed to be Graham's mom! We had a wonderful Mother's Day weekend. Matthew's family was in town and we went to Pullen Park on Saturday. Graham enjoyed riding the train and carousel. Then we made a quick trip to urgent care because Graham's right eye was red and puffy and draining. Pink Eye. Then we had dinner and celebrated the birthdays of Melanie (Matt's mom) and Jason (Matt's brother).

We dedicated Graham at church on Sunday and then had lots of family over for lunch. And after everyone left Matt watched Graham and let me nap! It was a great day.

Last week we took a little class in preparation for the dedication. The children's pastor talked about the story of the paralytic that was lowered through the roof to get to Jesus. (Mark 2:1-12) Jesus forgives the man's sins and then heals his body. Jesus forgives his sins first because that was his greatest need. This was a good reminder that Graham's greatest need is to know Jesus as His Savior. We have spent a lot of time praying and being concerned about his physical needs and we need not forget his spiritual needs. The dedication itself went well. All the parents and babies lined up on the stage and committed to raising their baby in the way of the Lord. What a great responsibility!

6 Month Doctor's Appointment and 7 Month Pictures

Graham went for his 6 month check-up this week. It was a month late because he couldn't have any vaccinations within six weeks of surgery. He weighed 15lbs 15oz. He is back on track with his growth, even after the weight loss in the hospital.  Graham was in a good mood for the appointment and I got to ask my whole list of questions. I was quite pleased with the doctor. He seemed to really care about Graham and took his time to answer all my questions.

Graham has a few of the dissolvable stitches sticking up out of his chest. The surgeon's office said they would eventually fall off. They are still there but the doctor confirmed that they are not infected and so we should just wait for them to break off. Weird. The doctor recommended trying probiotics, Florastor, to help with the stomach pain and gas. I bought some but it is packets that you sprinkle over food and Graham isn't eating consistently well or in great volume yet so it may be a while before we can really get it in him. The doc also referred me to a local pharmacy that can compound his acid reflux medicine to be more concentrated so I can give him less medicine at a time. Insurance will not pay for it because they make it straight from the powder instead of using capsules like Walgreens. Stupid. So I paid $35 for it and I am glad I did. Giving him less medicine is much easier and he likes the chocolate flavor they made it with. (I am still giving it to him using a dropper since he still will not take a bottle.)

So that's about all for the doctor's appointment. In other news, we have termites. So we have to pay for a termite treatment and for a new window on the front of our house. Awesome.

Here are Graham's 7 month pictures.

 

 

Grandmama Laney with all 3 grandkids: Hayes, Graham, and Noah.

Second Opinion and Upcoming MRI

I took Graham to see another ophthalmologist for a second opinion. This doctor didn't really have any more answers for us... but I did like her better. She talked me through the exam and was patient with Graham. She did not see anything wrong with the anatomy of the eye and wants Graham to get an MRI to see if there is anything going on in the brain that is causing the eye problem. Apparently an ophthalmologist can order an MRI without having to go through a neurologist, but depending on what the MRI shows, we may still need to see a neurologist. So, Graham is scheduled for an MRI at Duke Hospital on May 16 at 8am. And because they will be putting him under general anesthesia he has pre-op on May 14. I can't believe that there isn't some kind of lesser sedation that they could use. I am not looking forward to the MRI because I am not thrilled about him going under general anesthesia again and because anything we find on the MRI will not be good news. Matt and I are praying that the Lord will just heal his eyes and that there is no underlying issue causing the nystagmus (bouncy eyes).