50 Weeks

Another busy week: first trip to the ER and started your first medication. One of the side effects is decreased coordination, hence the two new bumps on your head...I was waiting for the old bruises to clear up so we could take pictures for your birthday invites, but I'm thinking now we might just have to work around them because your birthday is only 2 WEEKS away!

We also caved in and bought you a high chair instead of just using your bumbo to feed you in so that we can work on your hand coordination and social skills at the table with us.

9 hours in the ER

While talking to Deacon's pediatrician, he requested that we (along with daycare) keep a tally sheet of the number of times Deacon appears to have a seizure throughout the day and if that number exceeds 6 times within an hour to let him know and that he will probably suggest sending him the the ER.

The daycare took the data yesterday for the first time. Of course, they aren't medical specialist, but they said they would do their best to document the times when it appeared that he had one. By the time we picked him up yesterday they had counted 39 (and that was not counting the 2 hours at naptime). Needless to say, he had exceeded the 6/hr. quota, and we called the doctor.

We headed to Texas Children's ER after work, went through triage and were told that the longest wait looked about 5.5 hours, but that she would give us some priority. So, we made ourselves comfortable in the lobby and waited. Every few hours we checked in with the desk and they had gotten even busier with some children who had arrived by ambulance and had priority.

Some time around 1:00am they finally called us back. After taking more stats and hooking him up to monitors and waiting a little more, the doctor came in. The on-call neurologist was going to look at his previous EEG and MRI and get back with the ER doctor. Once that happened she came back in and said that he had initially suggesting admitting Deacon for observation and then would be seen in the morning by a neurologist.

Well, due to the busyness of the hospital, there were NO available rooms, so the ER doctor had suggested an alternative: to send home with a one-time use medicine to stop a severe seizure that lasted longer than 5 minutes. She even made some comment about not wanting to admit him in the "dirty hospital with all of the germs" because he was healthy. I basically didn't like her first suggestion of just giving him something to stop a type of seizure he had never even experienced, seeing as that wasn't even the reason for our visit and that I was pretty sure he had been exposed to all of "those germs" in the 7 hours that we sat in the waiting room, and sent her out to look for an alternative solution. Brian said I came across a little "strong" (he may have used another word in place of this), but I didn't embarrass him. I thought that was pretty good since this is our BABY and by that point I was feeling a little sleep deprived.

Dr. Bubbles* came back with a compromise I could live with: an iv with a "super dose" of Keppra (an anti-seizure medicine), along with a prescription of Keppra to take twice a day, and that worse-case-scenario prescription. She said it will take a couple of weeks for the full effects to kick in, and in the first week he may feel extra drowsy until his body adjusts, but by the time we have his scheduled neurologist appointment on Feb. 17th we should have some feedback on how well it works.

Deacon slept through most of our time in the room, including when they gave and took out the iv. We made it home sometime this morning and have spent a lot of the day catching up on sleep. So far we have only counted 5 seizures today, which appears to be a huge decline. I feel better that we are taking some sort of action while we play the waiting game for his next appointment and am praying that we will get many more answers about what is causing the seizures, the effects they are having on him, and if there is a connection between them and his sight and developemental delays.



* Name may or may not have been changed to protect the annoying...

Still Going Strong

If you remember we left off with Carson's relationship here with his Christmas present to Maia.

After the holidays we took Carson to his first day back to daycare and the director had a present waiting for him at her desk. Guess who it was from???

Maia got him a cuddly Mario blanket!!

A few days later Carson arrived home with a picture that Maia colored especially for him:

Notice the heart she drew at the bottom!!!

Last weekend we went to Alyssa's birthday party, who you might remember from his birthday. She is absolutely gorgeous and loves Carson to pieces (along with a little boy who lives across the street from her). Her family knew all about Carson and I heard her telling her grandfather that Carson had told her that he could be her secret boyfriend as long as she didn't tell anyone!

When we left, I asked him about it and said "NO! She can be my EX-girlfriend, but Maia is my only girlfriend!" lol

49 Weeks

I think this may have been the busiest week of your life! First haircut, glasses, EEG, and MRI!! I have also started planning and ordering stuff for your first birthday party that is quickly approaching.

You have taken to your glasses amazingly and are like a newborn exploring the world all over again. We have already seen a huge leap in your ability to walk without falling and social interaction!

Doctor Updates

We heard from Deacon's pediatrician today and he received the results from the hospital on both tests.

The good news: the MRI came back normal! No tumors and the brain development is right where it should be for his age.

The not-so-good news: Like we suspected, the EEG was irregular. The doctor didn't have a lot of information, but it looks like seizures and the part of the brain being affected is the occipital lobe. The occipital lobe is in the back of the brain and processes visual information such as colors, shapes, words, and numbers. Whether there is a connection to his glasses, I'm not sure...

Other than that small bit of information, that is all we know for now. They can't put him on any medication until they find out more and we won't find out anything until he has his appointment with the neurologist on Feb. 17th. We also have our meeting with Early Childhood Intervention on Feb. 1st, eye specialist on March 4th, and hearing test on April 13th, all at Texas Children's Hospital.

I'm thinking they might need to reserve us our own parking spot for all the visits we will be making.

Our Little Harry Potter

Look who got GLASSES today!!!!


More pictures to come...

Deacon's EEG

One of our concerns that we shared with Deacon's pediatrician was that he startles a few times throughout the day and there will be nothing like loud noises that cause it. If he is sitting or standing when it happens he will usually fall forward for a couple of seconds. He referred us for an EEG to test for seizures.

Today Deacon and I went to Texas Children's Hospital for his appointment.


An EEG is the test where they stick little padded wires all over the scalp and test brain waves. They had Deacon lay in a bed with me and a bottle while they applied the wires. Then we laid still for about 30 minutes while they did their testing. At one point they flashed lights at him at different speeds to test his reaction. He did amazing and hardly moved or fussed.

When the test was over the technician came back in.

He said that during the test Deacon "startled" one time and he is 90% sure that it was caused by a seizure.

The neurologist was looking at the test and should be speaking with our pediatrician and hopefully we will get more information tomorrow like what might be causing them and medication for him to take. The MRI on Wednesday should also answer more questions.

We, of course, are devestated that the glasses aren't going to be the fix-all to our concerns. I'm terrified that this is the beginning of a list of medical issues for our baby. But, I am faithful and believe God isn't done answering prayers for Deacon.