My Biggest Fear

Everyday for over the last year and a half I have watched Crew experience multiple seizures. The seizures are what experts call Myoclonic and Absence seizures. Myoclonic seizures are when the person may have short, sudden, powerful movements of the arms or hands. Crew has been having seizures where his eyes roll around and his body jerks really quickly for only one or two seconds. Then it is over and he is right back with you laughing and playing as if nothing ever happened. They have been very short but really frequent averaging over 100 times a day. When this happens I usually go on as normal and attempt to ignore it. However, deep inside it hurts... a too frequent reminder of Crews brain injury.

Absence seizures may also be called petit mal seizures and are common in children. During this kind of seizure Crew usually has a blank stare that comes and goes quickly lasting, again, only a few seconds. I haven't noticed these until recently. I wondered if his "daydreaming" or "lack of attention" was, in fact, another seizure. My friend, who is also a nurse, babysat Crew only a week ago and asked me if it was a seizure. I said "I think so..." and she did too.

After consulting with the neurologist, we had decided that because these seizures last only a second that we wouldn't medicate him. Crew is so full of life. Anybody that knows Crew knows how sparkly his personality is. Because of all the wild side effects associated with medication we felt we were doing the right thing.

However, deep inside I've worried that these seizures would turn into something bigger. And on Sunday night... my biggest fear became my reality.

Crew had been down for a nap for two hours. I peeked in to check on him and what I found crushed my world. His eyes were open, glazed over, no response, body limp, shallow breathing, and evidence of vomit. Shaking him didn't change a thing. I scooped him up, and ran to the front door calling for DH to help me. He saw me holding the baby and came running in followed by my nurse friend. Another neighbor rushed down with her pulseoximeter (spelling?) and hooked him up. His oxygen saturation levels were low indicating trouble breathing. We all looked at each other and the decision was mutual... get him to the ER fast! I ran out the door carrying Crew followed by DH and off to the hospital we went leaving my two boys plus two extra boys that I was tending for the weekend in the care of my good friends.

As soon as we entered the ER they rushed us into the trauma room and hooked him up to the oxygen. We waited two more hours for Crew to "come around". It was a very scary and emotional time for us. Something that I've feared for a very long time. The really unusual thing is that he regained control of his left side before his right side indicating more involvement in the left side of his brain. Seizure medication was started immediately and over the course of the next few months we will follow up with the neurologist and get an MRI and an EEG.

Because of the trauma that Crew experienced at birth (due to placental abruptio) and his history of seizures, the doctors are assuming that he had a Tonic-Clonic Seizure more commonly known as a grand mal seizure. My heart is broken. Last night I slept (or didn't) with him right next to me in bed. Tonight I am trading beds with son #1 so I can be right there in the room with Crew.

On a good note: Crew was happy today! He was 100% his normal bubbly self. For a few hours there, in the ER, I feared that he would be changed forever. Never before have I been so thrilled to be wrong!

Mr. Crocodile

Over 365 days and 5 walkers later, I think we've found the golden one. I've had my eye on the Crocodile walker for quite awhile now.

I didn't want to purchase it without trying it first. It has taken some work to get access to one. Crew's PT was able to make arrangements with the medical supply store to order one for us to try with no obligation to buy.

Well, we finally got it here and it is sweet! It has a sling seat that keeps Crew from falling over. We put him in and he was immediately "Crewsin" all over the place. It didn't take long (uh, a few seconds really) to decide that it is definately worth buying.

Last night I let him wander while I attempted to make pear bread. Later, we found Crew attacking daddy's plant. Notice the pile of dirt below. His big brothers tried to act like they were mad at him. "Crew Xander you should be grounded...." they said. But I could tell that actually they are just as thrilled as I am to see him mobile and making messes. Just like two year olds are suppose to!

Earlier this week, when it wasn't freezin cold outside, Crew was able to take Mr. Crocodile for a spin. Up and down the sidewalk he went. The neighbors are so good about giving him lots of positive attention and praise. He was grinning from ear to ear.

I'm thinking I will cover some of the edges with felt or something to keep my walls and furniture from getting all scraped up. But for now... I'm just happy he's movin!

He can get to the door.... but he can't get out. This has opened up a whole new level of frustration. The blasted walker is blocking the door from opening. He also wants to open all the drawers and cupboards in the kitchen. Oh, this will never end... But still, I am smiling!

Until next year

Tues night was our last session of hippotherapy. Crew was able to ride the big big white horse named Zane. When Crew is concentrating on something he gets really really quiet. During his half hour horse therapy each week Crew would get extremely quiet and turn on the smiles. It was clear, even to those who don't know Crew well, that he was having fun. After our "not so great" first experience, I decided Crew would do better if I was a side walker. With the therapeutic horseback riding there is one person leading the horse and two sidewalkers (one on each side). The sidewalkers are responsible for keeping the legs in position and keeping the rider upright. Crew tried really hard to sit up tall and keep his head up. We also had him ride the horse backwards. Then forward on all fours (like in a crawling position) and then backward on all fours. It was a lot of fun. Sadly, in our area there aren't anymore opportunities for Hippotherapy until next summer. We loved you Zane... goodbye... until next year!

Mouse Slayer

I've considered changing the name of my blog. My sil, attack of the mouse, has been offering suggestions. I love her blog name but am not quite sure how she came up with it. Well do any of you have any suggestions on ridding ourselves of a mouse or two. Infreakingdeedio... we have mice. I saw the first one Monday night while trying to sail through disc 1 of Lost (Season 2). That scurrying little mouse kinda ruined it for me. I hate mice! I had to turn off the show and set the traps. Glue traps. Yep, that's what I use. I had that ole thing trapped by morning. DH calls me the Mouse Slayer. Tuesday night... same thing. I'm trying to plow through disc 2. Dang! Out of the corner of my eye, I see another rodent scurring past. Stop the show. Set more traps. Unfortunately, no luck. I haven't been able to catch him yet but I'm not giving up. I will get him. Well, anyway. What's your best mouse trapping tip?

I Remember...

I don't think any of us will forget the day. We won't forget where we were when we heard the news, we won't forget what we were doing, or how we felt. We had recently moved into a new house. DH and I had decided to wait until the cold weather hit before having the dish hooked up. No television is a good idea, right? Well, I was standing in front of the mirror, applying my makeup. The clock radio said 8:11 MT. I walked over, flipped on the radio and walked back to the mirror. The DJ was frantic. I remember hearing... a plane.... the towers.... a crash... I didn't get it. I didn't know what they were talking about but I knew, just by listening to his voice that it was BIG. I remember staring at the clock radio. What is this program anyway, I thought? I walked over and sat down on the bed. I listened. I felt sick. I sat there trying to piece it all together. I thought some pilot had made some horrible error.

Then... the second plane hit.
And the towers fell. And fell. And fell.
I remember thinking... Who did this? Why? How could this happen?

Sometime over the next hour my neighbor called. Mel, I know you don't have TV. Have you heard? Yes, yes I heard. She invited me over. I sat in her front room and we watched. We watched the planes hit the tower. We watched it over and over and over and it was horrible.

Later that evening as I was delivering the evening paper, it really hit me. As I drove up one street and down the next I noticed the flags. Flags in every yard. A symbol of our unity, love of our country, support. It hit me hard and a wave of emotion enveloped me. I turned on the radio... "I'm Proud to Be An American".... blared through speakers. Thanks Lee Greenwood and Ditto.

SNAPSHOT MEME- GIZMO CHILDREN

I found this fun little MeMe over at What On Earth Is that Smell?. I thought it would be fun to participate.

Here's how S(age 9) answered.
1. Something I do well - Play baseball.
2. Something I'd like to improve on - handwriting
3. My favorite food - roast beef
4. Three words that best describe me - tall, smart, happy
5. My happiest moment - 1st time kneeboarding
6. The most important thing in my life now - family (with help from dad)
7. Then to the moms: Were you surprised by any of the answers? I was surprised that it took so much coaxing to get S to play. He is so embarassed about this. I was kinda the same way at his age. S is a good kid... not too many secrets.

Here's how H (age 7) answered.
1. Something I do well - I ride my bike well.... really fast!
2. Something I'd like to improve on - Gamecube
3. My favorite food - Ramen Noodles
4. Three words that best describe me - Ramen Noodle head, sleepyhead, funny
5. My happiest moment - Being outside in the hot hot sun.
6. The most important thing in my life now - resting
7. Then to the moms: Were you surprised by any of the answers? Yes, since when does he like to sleep?

Here's one from Crew (age 2)
1. Something I do well - give hugs & kisses
2. Something I'd like to improve on - my pitching skills (I practice everyday... I throw my toys, I throw my food, I throw my books, etc.)
3. My favorite food - icecream
4. Three words that best describe me - cute, happy, loveable (with help from big brother, S)
5. My happiest moment - hugging my family
6. The most important thing in my life now - therapy, family
7. Then to the moms: Were you surprised by any of the answers? No, not really. (wink wink)

If your reading this... consider yourself tagged!

There's a first time for everything...

At 2 1/2 years Crew weighs in at just over 21 lbs. Now, on the "charts" and according to the doc this is considered "failure to thrive". Okay, I feed the kid... I really do. Because of his CP he has a hard time chewing and swallowing. I am always offering him something to eat but he usually just pushes it away. I have felt that he is getting really bored with the usual... yogurt, fruit, PB&J, Pediasure.

Yesterday morning I couldn't get him to eat much. We had to go into town for private therapy. Crew was extremely grumpy. He wouldn't use the walker and was obsessed with opening and closing the door. Finally, the therapist dug out a bag of Teddy Grahams and put them in front of Crew. We had Crew down on the floor on all fours and would have him reach up to get the cookies out of the bag. Supporting his weight with just one hand on the floor, balancing and reaching up with the other hand to catch a cookie is a great exercise, I learned. Crew snarfed the entire snack size bag of grahams. The therapist and I discussed that it is obvious that Crew is frustrated. He wants to be mobile. He wants to do what other two year olds do but he is so limited. Also, when kids are hungry or tired... the affects are huge. I wanted to go to Sam's after but he was so dang ornery! I decided to bag it! Instead, I stopped at Wendy's on my way home and ordered him some chicken nuggets. Yes, chicken nuggets! I've never given him any before and decided it was time to give it a try. While driving back home through the canyon, I kept handing him nuggets. He mutilated the first 3. I am assuming he ate them because I couldn't find them in the van ( he has a tendency to throw his food). LOL. After we arrived home, I put him in his chair and gave him some more. He looks happy doesn't he? It's time to introduce some new foods! Any ideas? 

Mondays MeMe on Sunday

I've been tagged by Jewel! I've never been tagged before and I don't know if this MeMe would be considered late or early. Duh! I think it's 6 days late but that's okay. Here goes:

1. How often do you blog? I use bloglines to check my blogs like 3 or 4 times a day. But I only post a couple times a week.
2. Online Alias: Grimella.
3. Have you ever stood up for someone you hardly knew? I hope so. My brain is kinda in a fog right now.
4. What do you do most often when you are bored? Read blogs or push Crew around the block in his fancy little sports car.
5. When bathing, which do you wash first? I shower. My face.
6. Have you ever been awake for 48 hours straight? no, Why would someone do that to themselves.
7. What color looks best on you? pink
8. What’s your favorite drink? Diet Coke
9. Do you believe in heaven and hell as a real place that each of us will go to after death? I agree with Jewel...I believe heaven and hell is something we create right here and now, and I believe that they are places we will go when we die.
10. Do you find that you have more online friends than offline friends? Probably. It's easier to keep in touch with the online friends.
11. What was your favorite subject in school? Math
12. Are you a perfectionist? Yes.
13. Do you spend more than you can afford? Yes, there's never enough money. $$$$
14. Is it better to have loved and lost than never to have loved before? YES
15. Do you consider yourself creative? Sometimes, and depending on what I'm doing.
16. Do you give yourself the credit you deserve? NO.
17. Do you donate time or money to charities? Occasionally.
18. Have you recently done something that you’ve criticized others for doing? Yes, sleeping in.
19. What’s on your mind? My Family.
20. Say one nice thing about the person who tagged you and the five people that you are going to tag. Jewel is a very compassionate person. Since it's 3 hours until the next MeMe I'm not going to tag 5 people but you can participate if you want to. No pressure here!

I'm thankful for...

When life gets you down.... It's a good idea to reflect on those things that I'm thankful for. Here's a few:

• Good health. (So I can take care of my fam)
• 3 fantastic boys (I couldn't be more proud)
• great therapists & doctors
• Sonic mozzarella sticks & cherry lime slushy. (hits the spot)
• flowers (gardening is my other therapy... right up there with blogging)
• family & friends (so supportive- thank you)
• fresh peach pie (yum yum)
• autumn

Piglet noticed that even though he had a very small heart, it could hold a rather large amount of gratitude. (A.A. Milne)