Saturday, January 29, 2011
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.
Wednesday, January 26, 2011
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...
Sunday, January 23, 2011
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:
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
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!
Thursday, January 20, 2011
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.
Wednesday, January 19, 2011
Monday, January 17, 2011
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.
Sunday, January 16, 2011
Deacon did great today! He was busy staring at the tv they had playing Toy Story and paid very little attention to what was going on with his hair.
Saturday, January 15, 2011
- You weigh 21 lbs. 8 oz. and are 29.75 inches tall!
- You are almost exclusively in 18 month clothes and wear size 4 shoes.
- This month you celebrated your first Christmas and slept through your first New Year's. You also had your first eye doctor appointment and upgraded carseats.
- Your walking has improved even more and you can now get to every room in the house with no problem! You usually walk with your arms in the air (like the picture above). We first thought it was because you were playing with your hair, but now wonder if you may do it to keep from bumping your head while toddling around.
- You have learned how to hold your bottle while sitting up and can feed yourself large cookies and crackers! You still enjoy your level 3 baby food, but will sample food from our plates too. We are excited that this is our last month to purchase formula!
- You love watching tv and will stare at anything that comes on, from cartoons to sports. You seem to like Wow Wow Wubzy and Yo Gabba Gabba the best.
- You are now sleeping through the night almost every day and typically go to bed around 7:00 pm and are out for 12 hours! You have no trouble going down and love sleeping in your crib.
- Us worrying about you this past month has reminded us to appreciate every blessing you have brought into our lives. We are counting the days until your glasses arrive and cannot wait to see your reaction to EVERYTHING, just in time for your first birthday party!
Brian stopped before to pick up some earplugs because this event is known to get pretty loud. Carson of course didn't want earplugs, so Brian bought him a dorky hat that had flaps to cover his ears. (Another reason I am glad I didn't go!)
Brian captured this photo on the way in:
We bought the tickets at a discount with a promo code a radio station was giving out, and the seats actually turned out to be good ones!
Carson's favorite truck of the evening was the Monster Mutt Dalmatian, with his floppy ears and tail:
A perfect guys night out!
Wednesday, January 12, 2011
On the same day.
At the same hospital!!
Both with boys!
What is the chance!?!
This made visiting super easy, especially since their rooms were located directly across the hall from each other! (AND Amanda was in the exact room we stayed in with Deacon!)
When we arrived we visited Lindsey's son, Harrison, first because Amanda and her baby were feeding.
This was Amanda and Adam's first baby and he was a big guy, weighing 9 lbs. 9 oz.!!
Monday, January 10, 2011
Over the holidays I became a little more concerned when seeing babies younger than Deacon smiling more when looked at and feeding themselves. Brian reassured me that everything was fine and that he had just been so focused on learning to walk that he would pick up those other skills soon.
Last week Deacon started going to Carson's daycare and by Thursday the director stopped me when I went to drop them off and asked if we had ever had Deacon's vision checked before. I told her that I think they did at the hospital when he was born, but not that I knew of since then. She told me to speak with his teachers to get further information on what they are seeing. Basically they repeated the same difficulties that I had noticed: lack of eye contact or tracking of objects, no interaction with toys or other people, and not feeding himself. They suggested we get his vision tested and I was thinking more severe: Autism.
In between crying spells, I went to work and got busy. I am fortunate to be a teacher because schools have such a wonderful variety of people and resources. I stopped by our nurses office and received information from her and steps to take to get started figuring out the issue.
I called and scheduled an appointment with his pediatrician and another to have his eyes examined. Our government has an amazing program called InfantSEE that pays for eye exams on babies. My friend also suggested contacting Early Childhood Intervention. They are through the state of Texas and do evaluations and therapies on young children who are delayed in some areas, and will even come to your home or daycare to help.
The pediatrician and eye doctor appointments were scheduled for today so Brian and I had all weekend to stress and watch over Deacon terrified of his future. We prayed constantly.
This morning we went to his doctor first and expressed our concerns. He was wonderful and listened to everything we had to say and came up with a plan. Next week he has an EEG and MRI, and we are waiting to find out when his hearing test will be.
Next was the eye doctor appointment. I had no idea how you could even check the vision of a baby, especially ours, who doesn't look where you want him to or track items. The eye doctor was so patient and took her time working with him. She first held up these paddle boards with stripes on them to see if he would track them; he wouldn't even look at them. Next she looked in his eyes with a light. She could tell by the way the light reflected back at her as to whether or not he needed a prescription. She immediately saw that he was near-sighted. She then dilated his eyes and we waited 45 minutes for it to kick in and checked his eyes again. The doctor saw then that he is ALSO far-sighted! Poor baby can't see close up or far away!
We worked to find the correct prescription and then created a practice pair of glasses by taping the lenses to a baby frame. He was so tired by this point, but we were able to put them on and put a toy in front of him. For the first time he tracked it with his eyes and reached for it!! The doctor and I cried together.
Our little guy will be getting glasses and see the world he has been missing out on for the past 11 months!
And will look something like this little girl in 5-10 days when they arrive (except in gray):
We have no idea if this will be the cure for all of our concerns, but we are hoping so. If not, we will face the obstacles as they come.
Tuesday, January 4, 2011
The trip is less than 2 hours from my parents, so we woke up that morning and rode in a caravan out for a shopping adventure. Look how happy my parents were:
Because they drove in the nice, quiet car while we traveled with these guys:
all four boys!
The day started out looking overcast, but by the time we made it the sun had came out making the weather cool, but comfortable.
I had to capture a picture of my dad with his "man-purse."
We ate lunch at a Cajun restaurant within the grounds; they had the yummiest bread pudding and Cajun eggrolls.