Friday, January 23, 2009

Another little scholar

Ryan's new glasses arrived today. Cute, right?

Ryan's MRI

Ryan had his first MRI this morning. Our day started VERY early. Ryan wasn't supposed to nurse after 6 am. I had set my alarm for 5.30 am thinking that I could nurse him just before 6. But, Ryan apparently had other plans. He woke up at 5 am. I took my time changing his diaper in hopes of delaying his feeding, but he was finished nursing by 5.30 am and wouldn't nurse any more after that.

We left the house around 6.45 am and arrived at the hospital at about 8 am. We went downstairs to the pediatric radiology waiting room to register. After about 5 minutes, we were taken to the prep/recovery area. They weighed him (14 lbs) and took a medical history. I met with the anesthesiologist who decided that we would just try an IV sedation.

It took 5 ... yes, you read that correctly ... FIVE attempts and 1 1/2 hours to get the IV placed. It was heart-wrenching to watch as they pinned down his legs and arms, and pushed and twisted his little limbs in a desperate attempt to find his tiny veins. When they finally had the IV placed, he went straight to sleep before they even started the meds. The little guy was just exhausted from all the trauma.

They took him back to the MRI and of course I wasn't allowed to go with him. They said he'd be back in 30-45 minutes, but it was 65 minutes before he came back. He apparently slept through the MRI, but woke as they took him out of the MRI. He cried all the way back to the room, and as soon as picked him up he went right back to sleep.

We spent quite a while in the recovery room trying to get him to wake up enough to take some clear liquids. They couldn't discharge him until he had kept some of the clear liquid down for a while. We eventually got him to drink enough of the glucose water and to keep it down, so we were discharged.

We got home around 2.30 pm. He and I slept for about an hour. I was hoping for a little more sleep, but I'm glad to see that the sedative seems to have worn off completely. I'm thankful that the ladies were eventually able to get the IV placed and Ryan was able to have the MRI done.

Now we wait ... about 62 more hours ...

Thursday, January 22, 2009

Fun flash back

I was showing Deborah pictures of her today as a baby. When I saw this one it made me smile. And, Deborah was so impressed with herself. "Me read book!" Deborah was 6 months old when this picture was taken.

Tuesday, January 20, 2009

EEG, Geneticist Appt, and a Sweater

We started this morning bright and early with an EEG. Ryan was a real champ! He slept through the whole thing and gave them a perfect reading on the first attempt. We will find out the results next Monday when we meet with the Neurologist again.

This afternoon we had an appointment with the legendary Geneticist. He's great and we really appreciated him. He was reviewed the results of the Chromosome Microarray with us ... normal, no problems diagnosed. After an extensive history and thorough exam, he feels that the next step is to see what the MRI reveals to us. He's going to personally view the MRI on Monday and will give us a call Monday afternoon.

So, Friday is Ryan's next appointment. Hopefully, he'll sleep through the MRI also and we'll be able to avoid having to sedate him.

And, on brighter notes... I finished his little sweater ... Just in the nick of time, too. I'm pleased with the results. It's a very handsome little sweater. I also ordered 2 new knitting books by Debbie Bliss, one of which has patterns for 3-10 year olds. I saw a cute little boy sweater in it and think I might make it for Johnathon for next winter. Speaking of knitting... I think I'll go do some now...

Oh, but first, one more picture ... Jessica took this picture of Ryan and I sitting on the couch tonight. I know ... I look exhausted (becaused I am tonight), but look at Ryan. Doesn't he look like such a big boy?

Monday, January 19, 2009

Neurologist Appointment

My Notes: Possibly cortical dysplasia? Especially interested in viewing the midline brain structure and the lower brain structure, specifically below the thalamus. Could be minor hydrocephalus... slight possibility. Ryan orients to the light. The light is getting in. Dr Seals does not think it's true amblyopia but probably perceptive amblyopia.

The pet. hem/calcifications identified on the CT Scan & Ultrasound in the NICU are definitely "artifact".

Diagnosis: Encephalopathy

The Neurologist Appointment

I met the Neurologist today. This Neurologist came highly recommended and I liked him a lot. He was very kind, but obviously incredibly talented/knowledgeable. I took him a well-organized set of all of Ryan's medical records. (He has a lot for a 5 month old baby.) It was super helpful to have the records and especially helpful that I was so familiar with them.

He spent a lot of time, probably an hour, going through Ryan's health history and asking me questions. Then he spent another 1/2 hour or so examining Ryan. He ordered an EEG for tomorrow and an MRI of Ryan's brain for Friday. He would have liked to have done the MRI earlier; however, it takes 2-3 days to get the approval from our insurance company. He didn't want to spend a lot of time talking about the possible diagnosis until we have the test results back.

So, it was pretty much what we anticipated ... he ordered more tests. We have EEG on Tuesday, and the MRI on Friday. Then we see the Neurologist again on Monday.

I am thankful for a friend who is a Neurosurgeon, and for his recommendation in finding this Pediatric Neurologist. I am thankful to have immediate confidence in his knowledge. I am thankful that there are so many wonderful men and women who are willing to sacrifice so much to attend medical schools. They are such a blessing in our lives. I am especially thankful that the men and women who have assisted us with Ryan's health concerns have been so kind and good to us. It sure makes our lives much easier.

Sunday, January 18, 2009

Tomorrow's the Day

I was visiting a website I had bookmarked a while ago, and came across the following statement. I can't imagine being able to pen what I'm feeling better than this. Tonight I don't want to go to sleep because I suspect the morning is going to be hard. But, anyway, here's what it says:

I remember the pain of the unknown, I still have it. How does someone overcome it - or do we just learn to accept it? These feelings are still fresh, but the sting isn't as painful. There is hope, and things do get better. If you are just starting this journey - remember that! You will find a way to survive and make it through. Your child is still the little child that will always lay their head on your shoulder and look into your eyes and give you that awesome feeling. They didn't ask for any of this, but it is our job as their parents to help them through it. You will still have your dreams; they will just need to be adjusted. You'll wake up from the nightmare and you will just dream new, more fulfilling dreams.

You are not alone.

(Thanks to:

Tomorrow's the Day

Tomorrow morning we have our appointment with the Neurologist. I suspect he will just order tests, but I am anxious. It's going to be an even busier week this week than last.