Friday, May 25, 2012

An Update on Life


This is how Jake likes it. He likes to be on the ground, rolling around to get his toys and books. I remember working so hard on trying to get him to roll for months and months. Finally, he's an expert roller and he can get anywhere he wants. So then what do his therapists say? That he needs to be up! 90% of babies Jake's age are walking experts, so since he's not crawling (more like, refusing to work on crawling and fighting me when I try) he needs to be up.

I'll admit I've been taking a bit of a break from therapy lately. Not completely, but I haven't been as dilligent as I should be because we've both been burned out. It's a major workout and fight every time! But I'm getting back on it and we're going strong from here on out. If we want Jake to walk within the next year, no more breaks. We've been doing the stander for 35-40 minutes a couple times a day, his bouncer with and without leg braces (just a regular old bouncer!), working on sitting to standing, and some arm exercises on the exercise ball. Well, obviously there's always more but that's the main list.

We've been taking Jake out for swimming, which he thinks is pretty fun. He loves Grandma and Grandpa's pool. The water is good for his muscles. There's even "water therapy" that we may look into a some point. For now, we just do whatever mom thinks of which is usually just standing on the step in the pool and kicking around in the water.

New with me and Kenny?

Well, I'm so proud of Kenny. He just finished a semester of 18 credits, which means, after one class in the summer and another semester in the fall, he GRADUATES!!

Also, he has gone on a "diet", which is really just a lifestyle change from being unhealthy to healthy mostly based on the foods he eats and he has lost around 25 lbs! He looks great! He's been working very hard and sticking to his goals.

With me, Kenny being healthy has inspired me to be healthier. I have really been struggling since Jake was born with feeling good and having energy. So this week I started an exercise routine and seriously folks, it's like a complete turn-around already! Several days this week I didn't even need a nap when usually I feel like I'm going to die if I don't get a nap or two. I put Jake in his stander or bouncer in the morning while I workout so we both get our workout at the same time and I love having productive mornings. I'm really gaining a testimony of exercise! I used to be super fit, and exercise all the time and I really want to get back to that. I feel so much better. I have energy, I eat healthier when I workout, and I'm happier throughout the day. Usually I think "oh I don't know if I want to do this this morning" but then I remember how good I felt the day before and just don't think about it and put on the DVD. I hope I never quit!



Here are some pictures when we went to our friend's house for baby pool time. They have a little boy 3 weeks older than Jake, although I always forget that because their little boy runs around everywhere and so seems much older. In the first one, Jake was being super lazy and didn't want to sit up, silly boy! Again, getting back into therapy will help with him feeling tired too. As I exercise I realize how important it is for him too so that he can do the simple things in life we all take for granted.

Oh yeah, and Jake has a hernia, which you all probably read about on Facebook. It's not a bad surgery, and he'll do fine. It just seems like it's neverending with him and I just feel bad because he's developing a real fear of doctors. Unfortunately, doctors, hospitals, and needles will always be a major part of his life but he's a strong boy.

Oh yeah, my couponing is going really well. We've been able to save a TON of money. This month we had a couple hundred extra dollars that usually aren't there at the end of the month. I've been able to get so many things for free or almost free, it's amazing and I frequently wonder why I didn't do it before. A huge part of it is not only learning to use coupons but learning how to shop and not just give your money out that you could have saved. It's a fun hobby :)
Happy Memorial Day!



Thursday, May 3, 2012

Such is Life


So you know when everything seems to come at you all at once? I think everyone has had those moments. Saturday night I was thinking about how everything in my life seemed to be going so wonderfully and I think the universe heard me, and decided to rear its head our way to keep us on our toes.

I don't have any pictures for this post, which makes it more boring to read (at least in my book) but I did not have a camera with me.

Monday morning Jake woke up with a fever. I kept him on meds which seemed to be controlling it ok until that afternoon. Around 3:00 when I checked his temperature it was about 102 and luckily Kenny was home so we decided to take him to the emergency room. When we got there the waiting room was full so we got in line. Grandma Gina was there holding the baby. After about 30 minutes of sitting there waiting she looked over at me and said, " Ummm... he's staring to twitch...I think he's having a seizure". I walked over to the desk, told them, and they sent someone immediately. By the time we got him into the room he was completely unconscious, eyes rolled back into his head and his whole body was convulsing. They rolled him onto his side and got oxygen started. His skin was all blotchy.the temperature they took read 103.8. There wasn't anything anyone could do but wait for it to be over. We waited, and we waited. I said to the doctor,"This has been going on a long time, hasn't it?" She said,"Well it always seems longer than it really is. Its only been about 5 minutes." I thought ok, I'll just wait some more. We waited 5 more minutes. He was still convulsing. So they gave him a dose of seizure medicine. Another 3 minutes, still nothing. I was holding back tears trying to watch. Luckily I'm always halfway prepared for these kinds of things to happen at any moment. Realistically I know that medical issues could crop up any day with him. I managed to hold it together for the most part and after a second dose of seizure medicine, Jake's seizure finally ended after 15 minutes. 15 minutes! I'm so glad we were not at home.

They told me he would be in a quiet, drugged state afterwards because the dose of medicine they had given him was a dose for a much bigger person so it may take him a while to come out of it. He was conscious, but unaware of his surroundings. Sometimes you just couldn't tell if he was awake or not.

We told the doctor that his cousin had come in Saturday with a very high fever and they had been together all weekend. But Jake is a complicated case. The doctor said,"Well if he didn't have a shunt I can tell you we would probably just wait for his fever to go down and send him home. But we have to check out the shunt to make sure it's working." What does that mean you may ask? A CAT scan,   x-rays, probably 5 or 6 IV sticks, 3 blood draws, and hospitalization. Not to mention our first ride in an ambulance. I was a bit disappointed they didn't turn on the lights and speed down the highway, it was a little anti-climatic.

Since we got to the hospital at night and we had to stay at least 24 hours, we had to stay for two nights. I just cannot tell you how horrible I felt for Jake. Especially the first day it was someone coming in and poking jake with needles every few hours at least. He's a very hard stick so he had to get poked over and over and they kept digging around...it was so sad to have to hold him down when he has no idea why and he's just screaming and crying. They finally got an IV in him and during the night it somehow got occluded and his arm puffed up like a marshmallow and was leaking the rest of the night. They took it out and thank goodness they didn't put another one in.

The good news was that his scan looked good and none of the surgeons thought it was a shunt issue.

So things were going good, and then I get a call at 11 the second night. It was Kenny, and apparently our bank account got hacked into and someone stole 300 dollars. Awesome. Perfect timing. I managed to fall asleep.

Not for long. 2 am the doctor wakes me up, "Um... One of the blood cultures we got is growing some kind of bacteria, so we have to take ANOTHER sample and grow it to make sure it's not a blood infection." Jake is sound asleep and of course they have to get it right at that moment. So on goes the super bright light above his head and there's 3 people holding him down and sticking needles in him. What a way to get woken up right? I felt horrible. Also we've been informed it may be another 2 days until we're allowed to go home. At this point neither Jake or I have gotten more than 3 hours of sleep in a row, so that was great news. Not.

Ok, I'll skip ahead. Long story short, the blood sample was just contaminated and they let us go home Wednesday evening. Yay! Jake is back to normal, but we do have to watch him. Apparently some kids tend to get seizures when they get sick between ages 12 months to 6 years old, even sometimes without a fever. They don't know if maybe his hydrocephalus could predispose him to getting them easier but we just have to watch him every time he gets sick. They said hopefully it won't happen again, but it could.

The thing is, when Jake gets sick it's a whole different ball game. What I don't like is that he already has to have a CAT scan or MRI every year of his life. Do you know how much radiation those things put out? And right onto your brain too. All this is accumulative over his lifetime. We don't need extra reasons for him to get more scans if we can avoid it.

What have I learned? I'm going to be much more proactive about not letting Jake put his mouth on certain things and making sure I know if kids around him have been sick and trying to avoid their germs. There may be only so much I can do but I'm going to try. It's so unfair to him if I just let him do whatever and then he has to go through this again when it's not an actual shunt failure. Yeah, I'm upset. At myself, and at people who don't keep their kids home when they're sick. Seriously I don't know why people don't keep their kids home when they're sick!! (My nephew got it from someone else and it didn't show until Saturday. By then it was too late for Jake.)

The cherry on top of the ice cream this week? Finding put that my brother was in a huge car accident today and the car rolled twice. No seriously, it's good news because he wasn't hurt at all. But what did I say about the universe kicking our butts this week? I'm kind of scared because the week isn't over yet... bahaha