Last Sunday morning Brock woke up at 6:30am Michael got up with him and let
me sleep in a little longer. He came in not too long after with Brock cradling
him and laid him down next to me. I looked at Michael and he just looked sad.
He whispered to me that Brock just had another seizure. I was more than awake
at the moment as we snuggled with our little boy, who was so out of it and
drifting off to sleep.
I wish I would have been able to relax, but I was just way too wound up. I
tried to, but ended up just tossing and waking Brock up. So I got out of bed
and Michael stayed with him. I was just too sad to do anything. I didn’t want
to tell anyone so I wouldn’t have to talk about it. So I didn't. I mentioned a
little something on Facebook so that anyone who might want to know could.
Michael told his family, which I was glad for because I just didn’t have the
energy.
We called the after hour nurse and told them that he had had a runny nose
that day and you can see teeth pushing their way through. They told us to just
call his neurologist in the morning. The rest of the day we tried to listen to
conference and play with Brock but he honestly just didn’t want anything. And
just screamed and fussed the whole time. He managed to nap in between sessions
so we didn’t get much of conference but did hear some.
The next day (Monday) Michael left early to take his clinic check outs at
7:30. Brock woke up at his normal 6:30 and we played on the floor together. He
started screaming like something was seriously hurting him, but I was right by
him and I knew nothing was wrong; but also knew what was going on. I held him
while he screamed and then laid him down on his side, on the bed. He had another
seizure, about 2 minutes long. I texted Michael and he called me. I told him
what had happened and that I would call the offices as soon they opened. I told
him good luck on his clinic check out and hung up.
So now Brock was asleep and I was alone with my thoughts, not a good combo.
So I texted my family and let them know what was going on. Probably too early I
am sure. Sad was really a good way to describe how I was feeling. When he first
started having seizures I was afraid and full of adrenaline, but this time
around I was just sad. Brock didn’t sleep well so that didn’t last long. So I wrestled
with him as I called the offices leaving messages for nurses to call me back. His
Pediatric nurse called me back right after,
I just told her I was waiting for the Neurology
office to call me. She said yes that’s exactly what I needed to do. So I hung
up, and held on to my phone.
He was scared and anxious all day and didn’t want to nap or be held or
anything. So my thoughts soon went from how sad I was, to how to help my little
boy. As nice as the distraction sounded it was hard. Luckily Michael came home
after his clinic check out and before class and helped a lot! We worked to try
and find something to make him happy. He didn’t want to eat, play, or watch
super why (his favorite) the only thing that made him happy was to be outside.
So we went on walks. One walk in the afternoon I went on over a bump and he hit
his little mouth on the side of the stroller and started to wail. I booked it
home as fast as I could walk.
I finally got him to calm down and take a nap, even though it didn’t last
long it felt nice to have a break. Because I had a little break, I decided to
call the Neurologist again it was 1:00 and I hadn’t heard anything. (I called
them at 9 that morning.) I was just calling to see if there was a certain time
that the doctor made call backs so I didn’t have to hold on to my phone and try
and take care of Brock. The lady on the phone was just rude, acting like I was
bugging her and that she didn’t want anything to do with talking to me again. I
just said I have never talked to anyone and I was wondering if the doctor made
call backs at a certain time. She said yes I know just a mom worried about her
baby, (very sarcastically.) that I would just have to wait.
Luckily the Nurse did give me a call back soon after and she informed me
that his doctor was not in and she would talk to her the next day and call back.
Michael came home as soon as he could. We took Brock to the grocery store
and walked around. He was distracted and we had fun looking at the brand new
Kroger by our house.
We had him crawling around on our bed looking out the window
when we got home. He was having fun but then started losing his balance whenever
he got up and fell forward hitting his head on the window ledge, it was hard enough
to leave a bruise. He started crying and we calmed him down. Then he started
screaming once again and we laid him down on the bed when he went into another
seizure. This one lasted a long time over 3 minutes and we almost used the
emergency medication the doctors gave us when he came out of it. He had never
had a seizure after 8:30am or one that lasted so long. It was Michaels turn to
call, we called the pediatricians office and they just said they honestly don’t
know what to do and that we needed to get to talk to neurologist and thought we
had got ahold of them today. They said to call again and get the on call
doctor. So we did Michael got through and got to a resident. They told us to double
dose for the night, waiting 20 minutes between each dose. And to give him a
dose above what we have been doing in the morning. After we got Brock to bed, I
lost it and bawled.
The next morning (Tuesday) we gave him his dose of
medication and were playing with him again on the floor for about an hourish
when He started screaming and stiffening him arms and legs. His little arms
would shake because of how much effort he was putting into stopping himself
from curling up. He screamed and screamed. He finally lost control and went
into his seizure. (1 min 45 seconds). Our hearts just broke watching him try
and fight it. His screams are so sad and you know there is nothing you can do
for him.
Michael had to go to school but said if we needed anything
he would be home. It was my job again to call the neurologist office. I called
and just came unglued, he is not himself, I have been calling for guys for days
and no one has been nice to me. I don’t know what’s going on. He’s having seizure
even though we gave him more medicine. He had one last night, which was over 3
minutes. (They had no record of Michael calling the night before). They updated
my call to“URGENT”.
He slept better this day and I had a few friends Kelsie and
Lorna, one of Brocks friends Dax, come over to play with him and help distract
him. Seriously this helped so much. He was just fussy but not nearly as bad as
it was when he was just with me. He didn’t want to nap but finally got his appetite
back and ate and ate. I tried again calling the doctor’s office about 2 because
I still hadn’t heard anything, this time wanting to know if the doctor was
still in that office or at the other office. I was greeted by the same lady. Oh
I wish she said her name. She basically
said because I hadn’t been in that clinic before she couldn’t help me. So I
just hung up on her.
The doctor did however call back an hour later. Not having
any clue how many times I had called (didn’t know about that morning seizure.) However, she
knew about the one the night before. She had talked to the on call doctor and
the nurse told her that we had a video. She wanted to see us right away and see the video. She scheduled
us for the next morning.
Our friends the Kings brought us dinner. So much help,
seriously we felt so much better.
It was a much better day than the previous 2. Thanks to all
the help we got!
We had Brocks 9 month checkup, then straight over to the neurologist
after. They looked at the video and gave us instructions on how much medication
to take; gradually getting more til he reaches the right dose. We have an
appointment and an EEG scheduled for Tuesday. It’s not going to be fun on Monday
or Tuesday because he the EEG is supposed to be “sleep deprived”. We have to
keep him up late and wake him up early.
We have had more meals (thanks Rothlisbergers!) Thursday.
On
Friday, we spent the day distracted at the zoo with Sam and Paul. They have a
new Sting Ray exhibit and we had to check it out. It was a beautiful day out
and it uplifted my spirits so much.
We got a
package from Alison, Riley, Ethan and Sadie. Made me tear up, Ethan and Sadie
drew us cards. Alison had said that Ethan remembers when Sadie would shake and
he really wanted to make Brock a get well card. Not only that but the gathered
lots of yummy goodies for all of us. Baby Cheetos included for Brock. I still tear up thinking about it. Thanks guys, we love your beautiful cards.
enjoying the Cheetos!
Today we went to a Baptism for one
of the boys in my primary class. I had to speak but I had a lot of fun. It was
great to feel the spirit and to see such a sweet little boy be Baptized.
So far no more seizures since Tuesday and we are working out
the weird kinks of his medication. He
has been growing so much and has started to pull himself up on everything. He pushed
his new toy table across the room today as fast as his feet can carry him. All
of his focus is on walking and we have had a couple more bumped heads since.
This is how he takes naps now.
