Another Day, Another EEG

On Thursday, Tim took Oliver for his neurology appointment to follow up on the EEG. Although we knew that the results were normal, we still had an appointment to discuss what the twitching could be. I called CHOP and spoke to spina bifida clinic and neurosurgery to let them know what was going on, and to see if it sounded at all spina bifida related. They said that it didn't, but to make sure that the neurologist ruled out infantile spasms. I'm not sure if the neurologist thought they were a possibility, or if he was just unaccustomed to patients coming in with knowledge of possible conditions, but he ordered another EEG for Friday in order to rule them out. Thank God, that one also came back normal. He called me at 8:30 onh Friday night (talk about scary) in order to give me the results, and tell me that he wants to do a video EEG. He had mentioned this to Tim, as well. So I'm going along with this, until I realize that it is a 3 day procedure for which Oliver would have to be in the hospital. Um, what? Three days in the hospital? I'm torn -- while I want to be absolutely sure that there is nothing going on, this seems to be overkill. Are we looking to find something, or just rule something out? Either way, I would rather err on the side of caution. But where do I draw the line?

So the doctor is getting the ball rolling with pre-certification with my insurance company. In the meantime, I'm trying to catch the twitching on video so that I can show him. I caught a few instances that I'll try to e-mail to him. I'm hoping that he can diagnose from the videos.

So, here we go. Hopefully everything will be okay.

And in the middle of everything, Oliver got two teeth!

Another Busy Weekend

So far, the weekend has brought good things. Most importantly, we got good results on Oliver's EEG. Everything looks normal, thank God. We go on Thursday to see the neurologist to discuss the report in more depth and talk about possible reasons for the movements. Luckily, hHe has hardly even done it over the past few days. We're thinking maybe it had something to do with his medication, either the antibiotic (unlikely) or the medicine he uses in the nebulizer (more likely). He stopped both treatments on Wednesday, and we haven't seen him twitching much since.

Mac and I had a big baking day today. Aunt Beth bought us the Deceptively Delicious cookbook, which has recipes for using vegetable purees in a variety of ways. Although Mac is great about eating veggies, the book has a lot of simple and kid-friendly recipes. So we had sweet potato pancakes for breakfast (not from scratch) and made oatmeal raisin cookies (from scratch). Although I've been cooking a LOT more since having kids (even 1 meal a week would constitute more cooking that before I had kids), I haven't totally mastered how to cook well. Sometimes things turn out well, but I'm never that surprised if it doesn't taste that good. So the pancakes were a pleasant surprise, and the cookies were, well, edible. Not bad, but definitely missing something. But Mac and I had a good time baking, and Oliver had a good time watching.

We also had part of Oliver's 6 month PT evaluation today. We had to evaluate how far he has come and set new goals. He was so little when they first came out to evaluate him, so the progress he has made is amazing. The difference between a 2 month old and a 7 month old is quite large. However, there are still some areas that we need to work on. Rolling over, sitting up for a long period of time unaided, and reaching over his head are milestones that we had hoped to reach. We're getting there. And moving forward, we just want MOBILITY! Our PT, Ruth, is great, and is already thinking of ways that we can get there. If his service coordinator approves it, we'll move up to PT 2 times a week. Plus, we just have to fit in more practice. Lately, I've been overwhelmed by the amount of work that Oliver really could use. He's doing really well, but I want to get him to the next level. It's great to be surrounded by people who don't put limitations on what he will be able to do. I just want to make sure that he reaches his full potential.

Add to all of this visits with 2 sets of grandparents, and you have yourself a busy weekend. But we've had fun and lots of family time, which is always nice. We have a busy week coming up. As always, I have teaching and dissertation work to do. Tim's tournament is next Saturday, so we will have a lot of prep for that, and a very busy Saturday. I'm tired just thinking about it.

Candidate for a Nervous Breakdown

Some days are more difficult than others...

Actually, it backs up farther than just today. On Saturday, we noticed that Oliver was kind of jerking, or twitching, a little bit. It's been happening every day since -- some days more than others. Sometimes it is just slight, other times it happens for a few seconds. He looks okay while it is happening (other than the fact that he is twitching), but it is still unnerving. So I mentioned it when he went for his recheck at the pediatrician yesterday. Although they couldn't say what is was one way or the other, they did order an EEG to be on the safe side. We opted to stay local, since CHOP neurology (as opposed to Neurosurgery, which is where is already goes) has a ridiculously long wait time to get in. We were able to get an appointment for the EEG today. Luckily, it fell right in between my 2 classes. The EEG went smoothly. They said if there was anything alarming, they would call today. Otherwise, the neurologist is supposed to call tomorrow with an appointment for next week. Luckily, I got no calls today. But I'm still anxious to see if anything showed up. And if it didn't, what is causing the movement?

So after the EEG, I had to go give my Kean students their exam. As they haven't been performing so well, the exam was a stress point for both them and me.

Got home, picked up Mac, who did not want to leave Nanny's. For someone with such frenetic energy, Mac moves like molasses. Seriously, if you are in a rush (which I always am) you do not want to have to wait for Mac. I finally motivate her out of Nanny's house, get home, and start to cook dinner. I was making smothered Salmon, which basically consists of salmon covered in tomatoes, onions, a small amount of jalapeno pepper, and garlic. While I'm cooking, Oliver starts to cry. I figure he's hungry, but that he can wait until I am done cooking. Dinner is ready -- I set Mac up with her plate and start to feed Oliver. He cries every time I take the spoon out of his mouth to put more food on it. All of a sudden, out of nowhere, Mac starts bawling. Not her whiny cry, but a serious cry. She says her mouth hurts. My first thought is fish bone. Even though I understand the Heimlich in theory, I'm not sure how it would play out if I had to try it. I pray that I never have to find out. And I realize that if she was crying, she wasn't choking, but I was still scared. But then she said it was her cheek. So I took a look inside. I couldn't tell for sure, but I thought I saw some raised skin, like when you bite the inside of your cheek. And that makes me think coxsackie, a disgusting sounding virus that some kids at Mac's school had a few weeks ago. She just got off of antibiotics for a sinus infection, but you never know. She just kept crying, so I finally called my mom. Not that she could do anything, since she was on her way to DC, but I had to ask someone something.

When I explained what we were eating, my mom pointed out that it could have been the peppers in the food. Duh. Who feeds a 3 year old a dish with jalapeno pepper in it? Seriously, what a dumb idea. So I'm still not sure what it was. Mac was still complaining (but not crying) when I put her to bed. Not sure that I could rule out anything, I've been checking on her to make sure she is okay while she sleeps. She seems okay. There is no better sound in the world than the sound of your child breathing peacefully.

I'm not complaining, I'm just venting. It's not that I'm stressed out by my kids (this time). It's the opposite; I've found that being a mom makes you so emotionally vulnerable. The idea of anything bad happening to them is absolutely heart-stopping. And I don't mean to make Oliver's EEG all about me -- that is obviously about far more than how it affects my stress level. I just want what is best for him -- for both of them. When we were having the EEG today, the tech had never heard of spina bifida. When we explained it, she said "But he will get feeling in his legs eventually, right?" It was kind of hard to answer no. Sometimes I realize what a tough road he may have. When we went food shopping the other day, he couldn't sit in the cart as well as I thought he should. He kept leaning backwards. Why? Does he need more physical therapy? Occupational therapy? Do I just need to exercise him more? So many questions. And even though we've been blessed so far with good health for Mac, I never want to take her health for granted. So I check on them at night, pray for them, and hope that they turn out okay.

And, of course, ever since I heard that stress makes you retain belly fat, I stress about that a few times a day. Kind of counterproductive, but what else is new?

PT Updates

In our house, PT means two things: potty training and physical therapy. Mac has been potty trained for a month or two now, and it is glorious. And even though it took her a long time to buy into it, once she started, she hardly had any accidents. Even at night. Although she hasn't used it much recently, she has a Dora potty seat that she puts on the regular seat so that she doesn't fall in. Does that make sense? Here's a picture:

She has one at home, at Nanny's, and at Grandma's. One day when I was picking her up from Nanny's, she came out of the bathroom with the Dora seat on her head. I kid you not -- I don't know why she put it on there, but once it was on, it wouldn't come off. Liar, you say? I have proof:

I had to try really hard not to laugh, because she was so upset. It obviously hurt whenever we tried to pull it off. In my defense, I didn't take the pictures right away, but it was too good to pass up. Finally, Pop Pop had to cut it off. She recovered pretty quickly and even used the seat again for a while. So far, it hasn't gone back on her head. I wouldn't put past her to try again, though...

And the other PT -- physical therapy -- it going pretty well. Oliver still hasn't rolled over, which apparently is the gateway to mobility. So that is what we gear all of our time towards now. He's close, but still not getting it. I guess that all of his movement issues are related to the spina bifida, but it's kind of weird how it affects things other than just his legs. He still has a tough time sitting up on his own, and he kind of leans to one side more than the other. So we continue to stretch, roll, and play on the belly. Yesterday, I talked with the PT about what to do when Oliver hits the age where he should be crawling or walking. She gave me a really good idea: to go get one of those little flat scooters (like we used to use in gym class) to lay on/push. The idea of him wheeling away, out of control scares, me. Clearly, I mastered neither the little scooter, nor the bike, when I was younger. She said I could also get a little toy truck or even a package of diapers that he can lean on to scoot across the floor. She also told me that I might be holding him too much, and I should just let him hang out on the floor more. So we have all sorts of exciting things to try.

Our PT also recommended that Oliver see a physiatrist. A physiatrist "Specializes in clinical and diagnostic use of physical agents and exercises to provide physiotherapy for physical, mental, and occupational rehabilitation of patients: Examines patient, utilizing electrodiagnosis and other diagnostic procedures to determine need for and extent of therapy." Um, I just found this definition online-- there will be no electrodiagnosis. But anyway, this doctor would be able to prescribe special equipment and other therapy. Not that I'm looking forward to adding another doctor to our repertoire, but I do like the idea of getting Oliver all the help we can. And this doctor would be in New Jersey, which is always a bonus. Kind of like the Little Gym, but more intense.

A Successful Surgery

The title says it all. Thank God, everything went well. The day before surgery, we had to call to get a time: 6:15 a.m. Um, what? But they couldn't switch it, so down we went. Everything went very smoothly.

Hanging out in the waiting room.

6:15 -- we were actually on time! That might be the first time ever.

6:30 -- Taken into the perioperative room. This is the room for both pre-operative interviews and recovery. The room has a rocking chair for me, a chair for Tim, and stretcher/bed for Oliver, a "parent phone" for outgoing calls, supplies and a desk for the medical staff, and a tv. Since this is our third surgery, it's getting to be sort of familiar. Before the surgery, the nurse takes down general information about Oliver, verifies what is in his records, goes over allergies, etc. Then the doctor comes in to talk about the procedure and answer any questions. Finally, we meet with anesthesiology. Meanwhile, Oliver gets dressed in cute little hospital jammies. I'm always tempted to steal them, but I know I would never put them on him at home. Everyone commented on how big he is -- poor guy is going to get a complex.

7:30 -- They took Oliver into surgery. No matter how calm I am leading up to it, I always get choked up. Yesterday was no exception. I hate the idea of him going under anesthesia. Once he went to surgery, we went to the surgical waiting room. There is a woman with whom you check in, and she gives you all the information that goes along with waiting. I've identified a few jobs that I would want to do if I wasn't on my current career path, and for some reason, this is one of them. You can track Oliver's progress (in surgery or recovery) on a large board. There are computers, tables, vending machines, free coffee, and free graham crackers. I set up shop and got started on my dissertation. Tim read his book. It took quite a while for Oliver to get on the board -- I was just starting to get worried when I saw his initials and patient number pop up. A nurse came out twice to give us an update.

9:30 -- Oliver was in recovery. Always a relief. The doctor came out and told us that everything went well. They found his left testicle (yay), brought it down and "tacked" it so it stays in place, and also went into the right side and tacked that one down, too. The little guy is all set. Oliver was a little hungry and a little cranky. He spent much of the next hour sleeping and occasionally eating.

11:30 -- We were able to be discharged. After we went down to the cafeteria to get lunch, we hit the road to go home. Oliver spent the rest of the day sleeping and eating, but mostly sleeping. He doesn't seem to be in much pain. He has four incisions altogether, two of them in a very delicate place. But by today, he was all recovered from the surgery.

All tired out and ready to go home.