Friday, July 17, 2009

What a busy week!

Well, busy in a mundane way. We left on Saturday afternoon for a quick trip to St. Paul, MN. Matthew's epileptologist wanted to see him for a routine checkup. Too bad it's a 6 1/2 hour drive! We got in late Saturday night; and didn't do much other than get some icecream and relax.
Sunday we were up and at-em. Matthew has been sleeping so good and he slept through the night at the hotel; something I wasn't sure he'd do. We went downstairs for breakfast; I always try to stay someplace that has a good continental saves us some money and we don't have to drive. Lately we have been putting Matthew in his blue tomato chair in his stroller, so he can sit up like a big boy. If he starts out asleep though, we just put the carseat in the stroller. Sunday, he was wide awake, so we strapped him in his stroller and blue chair and headed downstairs. I was very suprised at the different way people acted around Matthew. When Matthew is in his carseat, everyone always peeks in and says, aw what a cute baby!! In his blue chair though, we just got TONS of stares; and then they would quick look away when they realized we saw them looking at him. I guess his disabilities are more evident when he is sitting up. I saw a shirt once that said; 'keep staring, I might just do a trick.' While that is very synical, sometimes I feel like telling people that it's not okay to stare. I DON'T mind you admiring my baby, and even asking questions (I actually welcome that), but I guess it bothers me when people just stare. I know they probably don't know what to do, and so I try to have grace, and just smile; but after a while, I have to say it really bugs me to feel like we're always on show.

Anyway, after breakfast, we got ready to go to the Mall of America. It was only 5 minutes away, so we just had to go. Wow, is that a great place, even if you don't like to shop. We basically walked around the whole time and ate great food! It is four stories tall, and has over 500 stores! There is an amusement park in the center...way cool! I took some pictures, but they didn't turn out so wonderful. When we go back next summer, we plan on taking the kids. They have a Leg0 store and a American Girl store. Here is there website if you want to check it out!
After walking around for about 5 hours, we decided to go back and veg out at the hotel; which we did. We ordered pizza, which a bad experience. I wanted a pizza with Chicken, tomatoes, and onion on it with a diet coke, Steve wanted wings and a dr. pepper. The Papa Johns that we ordered from was out of chicken, mushrooms (which I chose 2nd after they told me they were out of chicken) Dr. Pepper and wings!!! We decided to order from another pizza place, but there crust was to be desired!
We also went down to the pool, which Matthew did okay with. He didn't hate it, but didn't love it either. The water was really warm, so that helped, but I couldn't hold him away from my body or he cried.
Monday morning we went to see his epileptologist. First they did his EEG and then the doctor saw him. He said the two EEG's (one from when he was hospitalized in November and the one from that morning) looked completely different. He said that this new one was SOO much better. He was okay with us continuing to decrease his phenobarbitol, we're hoping to get rid of it and only be on 2 seizure medications. With these decreases, we've seen his personality starting to emerge. I'd sure love to get him off as much of his medication as possible. He was very happy with all that had happened since he saw us last and wants to see us in 6 months. That will be in January, so I think I will be flying for that appointment. He also warned us though, that even though we were seeing so many good things now, to be ready for bad times also.

Then for the VERY long trip home. I had forgot to mention that we had left the other kiddos with friends and family. Megan and Mason ended up in South Dakota with Grandma and Papa, and Micah was with a friend down the street. We picked them all up, and were exhausted when we finally got home.
Tuesday was our 13th anniversary, but spent very uneventfully since we had just spent the weekend out of town.
On our way home, I found out a friend of mine, who was pregnant, had lost her baby that same day, and she had asked me to be with her at the hospital when the baby was delivered. She was induced on Tuesday evening and I stayed with her for awhile and then went back up in the middle of the night when she delivered. Oh, that is such a hard time, and especially harder when it is a friend of yours. I stayed as long as I could and then went home at daylight so Steve could go to work. So Wednesday was basically gone too.
Last week, our dryer had shorted and caught fire...yes, our household is always busy :) It scared the crap out of me, but other than the dryer being very melted, no other harm was done. Thursday we were able to get that fixed; which was good, because my laundry room was starting to take the shape of Mount Everest. So I spent the rest of this week trying to catch up on my laundry (I'm still not done, in case your wondering)
Matthew also had therapy Tuesday, Wednesday and Thursday.
Well, there is our week in a very long recap. Sorry, I don't have any pictures; I haven't been so good at taking them lately.
I think I've almost caught up on my lost sleep, so I'm hoping for a really fun week next week. In less than 5 weeks, school starts here....where is the summer going?????????


Shelly said...

Jill ~ WOW! What a recap story! I think I need a nap after reading about it! Glad that your visit to Matthew's doctor in MN was good...and that God kept you safe during your travels. So sorry to hear about your friend's baby...we will be praying for them.

Kristen said...

Traveling your week with you just through your words is exhausting alone. That is some week! Hopefully, if you fly next time, that will help cut down the chaos of road travel.

The Mall of America sounds awesome!! How great would it be to win a shopping spree to a place that has 500 stores!!

My heart breaks for your friend that lost her baby. She called on a good person to stand next to her side during that difficult time.

Keesler Chaos said...

Holy Cow! You had a crazy week! And the mountain of laundry just never stays away long, does it?

I'd love to take the kids to Mall of America, so tell me about it next time we see you.

Tyler said...

WOW...there is never a dull moment in your household. I am happy to hear that the doctor appts went well. I am with you with the stares, I think people just don't know how to react when they see a special needs child. I just wish they would ask and address you like any other person they meet. I will be sure to keep your friend in my prayers during this difficult time and I hope that you have a better week next week.

Diane, Tyler's mom

Sherri said...

What a week! You need a Mom's night out :) Speaking of stares...I took the kids to an event at the library by our house a couple weeks ago...maybe not the best idea with Miles' incision. I totally don't think anything of it. People were staring at us like we were some sort of circus act. Then there were the grade school boys who were audibly making fun of him. Not fun.

Lisa said...

What a week! Exhausting, fun, and emotional....all rolled into one.

I am so sorry for the loss of your friends baby. I remember when I was pregnany with Elisabeth how fearful I was that she would pass away in the womb and that I would have to deliver her still born. What a difficult time, but I am sure it must have been a huge comfort for her to have you there.

I am happy to hear about Matthew's EEG. Especially since he and Elisabeth like to mimic one another. If he's doing well it's a good sign for Lizzy :)