More prayers needed

As you've probably noticed I didn't write a 5 month news letter and I haven't posted in a while. Well, right around the 5 month mark we when I got really worried and knew something was wrong and I couldn't think about anything else. I could have written about how Jack discovered his toes, and let me tell you, they are amazing. TOES! He loves them. And how he is rolling across the floor on a regular basis. I can't put him down and expect him to be there if I turn away. He's also pulling his knees up under himself and scooting a little but he hasn't figured out what to do with his arms yet. And the hair pulling, it gives me a headache almost daily and one of these days I'm going to go and just have it all chopped off so that he can't pull it. But speaking of hair, Jonathan put Jack on his shoulders the other day and was walking around the house with him. I spotted something on his shirt and it turned out the be barf, and it wasn't only on his shirt. Yep, Jack puked all over daddy's head. I was so proud.


Every parent expects to worry about their kid to some point, its just part of the package. As infants you expect to worry about the eating, bumping their heads, and how they just won't sleep. As toddlers you expect to worry about preschool, the things that are going to come out of their mouths in public, and how they just won't eat. As school aged kids you expect to worry about their grades, who they hang out with, and how they just won't do their homework. And as teenagers you expect to worry about sex, drugs, and how they just won't listen. These are all givens and things that every parent hopes to get ot worry about. One hopes to never worry that there is something wrong with their baby's brain and that their kid might not be normal enough to get to worry about these things.

So the story starts about 4 weeks ago when Jack started having these little spasms. It looks like the startle reflex that they have when they are really little but it happens in clusters over and over again. When it first started they wouldn't last long and it was only once or twice a day. I called the doctors office on the 3rd day because I was worried. I've worked with a ton of kids and I know that some twitching can be totally normal but the was just a little too much for comfort. The nurse assured me that it was normal and nothing to worry about. I still worried. That was a Tuesday and Friday we had our 4 month check up (although it was 2 days before he turned 5 months old). I mentioned it to the doctor and she referred us to a neurologist just in case. We got out of there late Friday afternoon so I couldn't call the neurologist's office until Monday.

On Monday when I called they told me that they couldn't see him until December 15th. DECEMBER! I completely flipped out. I called the pedi back and left a message, the nurse called me bac, she talked to the doctor and he ordered the EEG. They said that if anything was abnormal they they could get us in with the neurologist sooner. By the time all of that happened I couldn't schedule the EEG until the next day. All of the delays were really getting to me. In the mean time the spasms were happening more frequently and they were getting stronger. He started crying between each one and you could tell by the look on his face that they scared him. I started writing everything down and even video taping them so I could show the doctor. I won't post the video because it's hard to watch.

I got the EEG scheduled for Sept. 15th and sent the video to a few people to watch. My friend Will who worked in a hospital for a while, my brother who's a doctor, and a friend from church who's a pediatrician all watched them. All of them were concerned.

On Tuesday the 8th we showed up at Dell Children's for the EEG. I had written the date down correctly but somehow I got it in my head that it was the day after Labor Day. Don't ask my why but I was convinced it was then. When they told us our mistake the scheduling person had pity on us. I told her that a week was a really long time to wait when my baby was having what I thought were seizures. She coudln't get us in that day but she took my cell number and gave me her direct line. Shortly after I got home she called me and said that they had an opening the next day and we took it.

The EEG went fine. We kept him up for a long time before we got there so that he would be sleepy. He cried while we had to hold his head still to mark where the leads would go but fell asleep before they got all of them on. I was able to lie next to him on the bed and he snoozed the whole time.


Our doctor was hoping we would hear something by Friday but the tech who did the EEG said that it could take up to 10 days. Again, a long time to wait. However the next morning the phones went nuts. I was rocking Jack and putting him down for his nap. As soon as I left the room I heard the phone ringing and I went to get it, there were suddenly 3 messaged left in the last 10 minutes. I called Jonathan back and he had talked to a nurse at the pedi's office, the EEG was abnormal and the neurologist wanted to see us that day. The neurologist who couldn't see us until December was suddenly telling us to just get to the office. This is where any parent starts to panic a little. I've just had a doctor tell me that there is something wrong with my child's brain. We had taken the jeep in for service that day and Jonathan had just gotten to work so we went in at 2.

The doctor said that the EEG was abnormal, he asked us what was going on, and we showed him the video we had taken. He diagnosed Jack with something called Infantial Spasms, a type of seizure in infants. He asked us lots of questions about Jack's development because usually when they see this it is associated with other issues and developmental delays. Thankfully, Jack is developing perfectly. The other good news was that the EEG wasn't quite bad enough for it to be infantial spasms meaning we caught it early. He suggested that we check into the hospital so we could do some testing and get him started on meds. He said that if we can get these things to stop he thinks that Jack will continue to develop perfectly and that he will go on as if this never happened. That's what we're praying for anyways. (And I suggest that you don't google it. Read the link if you want but google paints a very grim picture. Don't say I didn't warn you.)

One of his nurses walked us through the secret under ground tunnel to the hospital and got us checked in. The hospital stay was stressful. We got really tired of people coming in and asking what was going on. I can't even count how many times I had to re-tell the griggin story. The poor kid was poked an prodded by a zillion doctors and nurses but he was a trooper. We got him started on some steroids because apparently these type of seizures don't respond to normal seizure medicine. If the steroids don't work then we'll have to give him daily injections of a drug called ACTH.


I was told that I couldn't feed him after midnight because our MRI was scheduled at 8 AM and because you can't tell an infant to hold still he had to be put under for the procedure. I tried to wake him up at midnight and feed him but he simply wouldn't wake. At 4 he woke up screaming and hungry. After about 15 min of screaming the nurse told me to go ahead and feed him and that 4 hours without eating was enough. At 6:30 a tech banged on the door and burst in screaming that she was there to weigh the baby. I wanted to strangle her ass. My 5 month old baby is going to have an MRI in 1.5 hours, was sleeping soundly, and you burst in and wake him up. AND I CAN'T FEED HIM. I was beyond pissed and I sent her away without weighing him before I tore her eyes out.

The screaming started again because of course, I couldn't feed him. After only a few minutes of screaming this time the nurse came in and told us that the MRI had been moved to 11:00 so I could feed him one more time. The rest of the was was spent trying to console a very unhappy baby. The poor little guy didn't understand why I wasn't feeding him. Thankfully my parents were there to help entertain him a little. He loved the butterfly wall.


And he got a candy flavored binky which he liked. We dipped his binky in some sugar water and he would suck on that for a while. He napped some and at about 10:30 we found out that the MRI was being pushed back to 12:00. To make a long story short it was pushed back to 2 after that. If you're calculating, at that point it had been 7 hours since he had eaten. Not feeding a baby for that long is so not okay. He was screaming, I was crying and leaking, and it still wasn't over. They finally took us down for it and while we were waiting a doctor came and told us that there had been an emergency and we had to wait longer. This was by far my most stressful day as a parent so far. They gave us 2 options, either feed him and wait 4 hours or wait another 2 hours without feeding him. We opted to feed him. Then it was back to starving him and more screaming before they finally did the MRI.

And they were going to put him under and then start the IV and draw blood but because Jonathan had a bad reaction to a gas one time and we don't know all the details of that they had to start the IV first. I wasn't in the room but it took at least 3 times before they got it in. He also has another 3 poke marks that might be from trying too, I'm not sure. But my poor baby! He still has bruises.


The MRI was to make sure that his brain developed normally in-utero. Which it didi. And the blood work came back clear too. So basically they don't know why the seizures are happening. But the doctor insists that the prognosis is good.

Since we've been home and on the oral steroid life has been hard. We've both been sick. Jack has been super irritable, he thinks he's starving all the time, and he groans constantly. Well, when he's not out right crying he's groaning. His naps have turned into 10 minutes, if I'm lucky. It's been really rough, especially since I have no energy because I'm trying to get well myself. I'd love to take him on a long walk but I don't think I'd make it across the street right now. And my house has never been messier. I only thought that I didn't get anything done becore all of this, now I really don't get anything done. Even basic maintenance has gone out the window. Today was a little better so I'm hoping we're headed for better days.

But thank God I didn't listen to the nurse who told me that this is "normal". Thank God I didn't just wait until December to see the neurologist. Thank God we showed up a week early for the EEG. Thank God we have insurance. And thank God we caught it early.

So we're praying. We are talking to the doctors. We have thrown sleep training out the window, all of those hours we spent getting him to fall asleep on his own, gone. He even sleeps with me some now. He hasn't had any seizures for the last 48 hours which is SO great. He's a tough little guy and I'm sure we'll all make it through somehow.


We had a great doctors appointment today. The seizures have finally reduced enough for us to stay on the oral meds. If he doesn't have a seizure for a week then we will reduce the dose and go for another week. Yay! The ACTH (which was going to cost us over $7,000 out of pocket but an organization paid for it) is being delivered tomorrow. It's a long story, but we're saving it as a back up plan.