Worried....

Something is wrong with Matthew. What it is, I don't know. Since Thursday he's been screaming, extremely jittery and acting very weird. No one seems to know what's wrong with him. I've been to the doctor on Thursday, had tests to check his shunt on Friday. I've talked with his epileptologist Thursday, Saturday and today. No one seems to know what's wrong. The biggest thing that has been going on is we have been decreasing one of his seizure medications, so we thought that was the problem. But we've given him big doses of it, and it doesn't seem to be the problem. I don't get nervous often with Matthew; I'm actually very comfortable (often more than the doctors) with him...but not right now. I've actually toyed with just packing him up and taking him to the hospital, but the good neurologists are 6 hours away...that's a big ER trip. So the doctors are going to conference about Matthew tomorrow. Hopefully we'll get something figured out.

Lately...

I have been...

..staying up late with Matthew and sleeping in way too long (we missed therapy twice this week!)

...de-cluttering my house. I am sick of all this stuff; goodwill is going to love me. I'm almost done with my bedroom. Next up, Matthew's room: Mason now wants to be upstairs again, and there is not enough room for the both of them!

.....seeing doctors. Matthew went to the doctor today. He was having ALOT of seizures and he also has an infection around his g-tube stoma. He got a dose of ativan...and he's been sleeping ever since; he was also within a whisper of another ambulance ride; but the medicine decided to work. On the good side of things; Matthew weighed in at 20lbs! We're up 2 pounds in 5 weeks!

...using my blender. Matthew's pediatrician wanted to switch his g-tube feedings over to pediasure; upon further investigation of the can of formula; I was unhappy with the ingredients. 1st ingredient water, 2nd ingredient sugar, then milk products (which Matthew is intolerant to) and then just chemicals to balance it out. So I went to google and did some investigation. I found a book written by a dietitian and a occupational therapist and a group of families who blend REAL food and make there own meals for there loved ones. I've been working with a local dietitian and I think we've got a recipe that we like, that provides the right amount of calories, fat, protein and nutrients for Matthew. Matthew seems to be thriving! The weight gain is evidence of that!

...contemplating that summer is quickly approaching an end for the kiddos :(

..spending time with friends and their kiddos doing warm summer activities!






Inspiration from this blog post came from here

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 breakfast..it 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?????????

Too tired to blog

I just wanted you to know we're still alive and well, we're still all here; I just can't muster the ambition to blog. I've had little sleep and I'm still catching up from our whirlwind trip to see Matthew's epileptologist in Minnesota. I things I want to tell you all but first.... Off to take a nap.........

Cooking on a budget

Lately, our grocery bill has seemed to skyrocket. It is not uncommon for me to spend 180 dollars a week for food. I still remember a few short years ago when 100 dollars was plenty. There are several factors, including the price of food and growing tummies in my growing boys! So I'm been trying to take a look at my menus and trim some money where I can. I did find a list of frugal recipes online. Most of them have been good. Let me preface this with a couple things: 1) My kids eat like kids. They are not big into rice, beans, and all the yummy things I love that are inexpensive. 2) On the same note, I don't want to serve chicken nuggets and mac and cheese for every meal. So planning is just a little tougher with these things in mind. But I found a recipe that EVERYONE seems to love, including the kids.





I LOVE Chinese food. (So do my kids!) I would eat it almost everyday if I could. I found a recipe on the above mentioned website, and tweaked it. Here is the result. Close to Chinese, but alot cheaper.



It's actually pretty easy.

Ramen noodles, the oriental flavor - (I buy 5 packages...but 2 of my kids only eat the ramen... if I were feeding Steve and I, I would probably be able to get by with 1 package)

Some type of protein. I happen to love tofu that is 'browned' in a skillet (fried in oil)

Veges- I used 1 package of frozen broccoli and 1 package of fresh baby bella mushrooms that I quartered

cornstarch

...............................................

I cooked the ramen noodles and drained them. While the noodles were cooking, I browned my tofu (you could cook chicken or beef chunks if you so choose for your protien) When my tofu was done, then I added my veges and stir-fried them. In a separate bowl, I wisked together 1/2 c. of water and 1 1/2 teaspoon of cornstarch for each packet of ramen (So in my case it was 2 1/2 c. of water and 7 1/2 teaspoons of cornstarch) and wisk that together with your seasoning packets from the ramen noodles. Add this mixture to your tofu/vege stirfry. Stir until thick and bubbly. Serve over ramen noodles. I REALLY like this recipe. It's a sort-of close knock off to chinese and you pick your veges and such. And, it's not expensive. And it gets a thumbs up from all my kids. Win-win situation!

One tough cookie!

( This picture shows Mason's true character-he makes our house so fun!)

Last Friday around Mason comes running up the stairs, and says "Mommy, I'm bleeding" in a very calm voice....and then turns around. I gasped. Blood was pouring out of his head. Now, Mason wasn't crying and (as many of you know), head wounds do tend to bleed a lot, so I tried to not get too bent out of shape. I quickly grabbed some towels and cleaned up his head. When I got a closer look, I knew he would need stitches. It was DEEP. Thankfully when I called the doctor's office, our pediatrician had an open appointment in 10 minutes. See we loaded (quickly) in the car and off we went.

When we got to the doctor everyone kind of had this panicked look, and the receptionist said; 'is this Matthew?' I said, "Why, sure THIS is Matthew (pointing into the stroller), but we're here with Mason." A look of relief swept over everyone's faces. Apparently the nurse we talked to accidentally clicked the wrong name when we called and everyone thought Matthew had busted his head open!!! (And they were of course, all wondering how that happened!)

Back into the treatment room we went. Dr. "S" numbed him up and Mason didn't even make a peep! I couldn't believe it. He just would squeeze his eyes shut with each poke. This little guy is tough as nails, I tell you! Three stitches later, we were on our way back home.

What I find most interesting is Mason's account of the incident of the injury. He told me...."Micah and I were wrestling, and I had a boxing glove on. Micah pushed me and I went FLYING!!! Then I landed on my head and blood came gushing out everywhere!" (That is word for word...oh and by the way, we are almost sure his head came in contact with a lego piece..causing the gash). We have since banned wrestling from the house!!

Matthew's 4th of July attire

It was almost cold here on the 4th of July. I had a cute little outfit planned for him to wear. I ended up pairing this cute outfit with a sweatshirt, socks and a pair of baby leggings. It even sprinkled a bit that afternoon.

We had a quiet 4th. The kids and Steve spent some time at the neighbors shooting off fireworks and Matthew and I chilled at home. He doesn't quite the sound of the fireworks, and he still has a cold, so we just stayed inside once it started getting noisy! Hope everyone had a great 4th of July!

We've been seein' alot more of this lately...

Please excuse the lighting on this picture...it was too cute though not to share!

Matthew has been almost giggly...it's been fun to see him happy...not something we get to see all the time