Saturday, July 30, 2011

The Phone Call!

So to say it quickly, cause I'm tired and want to go to bed (it's 9pm, mind you!) I got the best phone call today! Out of the blue, my doctor called me, which began as a check up call. I thought it was a little odd for her to call me personally, since it's usually her nurse practitioner that calls for her. So after going through things that had happened during the week, she informed me of the real reason she was calling. After bringing my case up to the council, yet again, on Thursday, and having everyone on the board (about 10 neurologist and neuronurgeons) view the reports of the tests from the week before, they came to the conclusion that I could benefit amazingly from the brain surgery that we have been talking about for the past two months! So of course this is a very scary process to have to go through, but I am elated of the outcome that is possible!! I know a bit about the surgery process, but will be able to inform you more of what exactly is to happen after meeting with the neurosurgeon soon. Trying to keep a positive outlook on what is to hopefully come out of this!! Hard stuff, but I feel like the end of this very long tunnel has finally been turned on!

And can I just say, I love everyone that has been helping me through this crap, especially my husband. He is my rock and without him, I crumble. And for those of you who know me, it is very hard for me to admit that! Hugs to all :)

Oh and pics of the littles will be coming soon, I promise!!

Monday, July 25, 2011

Our weekend, plus today!

My baby sister had her baby shower on Saturday! My "baby sister", Michelle, is 28 and not so much a baby if she's having one, right? :) She's having a girl, as far as the tech is telling them! My mom, older sister Tina and I had been planning the shower for a few weeks and it went off without a hitch! I love when things go the way they are planned. WE had it at my parents house and although we thought about having it outside for most of the planning process, we ended up having it inside due to the heat wave New England was having. It actually made it much better I think. Less work having everything right there. She got great gifts from great friends and family and got to spend some time with people she doesn't get to see all that often. I had fun bringing my Avery to her first all girl party, and hope she had fun, too! And don't worry, Cameron ended up making an appearance towards the end with daddy and got a chance to ham it up with some of his favorite people!


After the party, Mark and I decided to pack up and head down to the Cape for the night and spend the day Sunday. I swear, it was the fastest packing we had every had! Avery slept in the car for the whole 10 mins it took up to pack up. Very, very proud of us!! We got down, spent some time talking with my parents and went right to bed. Sunday morn, we went out for some breakfast then Tina, Mike and Ryan came down. The boys go OUT OF CONTROL hyper when they are together! They played in the sprinkler for awhile and just acted like the boys that they are. They never stop and I love it. Well, I love it when I'm able to play, too. This weekend, Avery was having a hard time being held by anyone but myself. Blame it on teething, maybe? But regardless, most of the time was fun!!

Today, Ryan came over again and the boys got to spend some time playing at my house. They are pretty independent when they are together so we catch them in the middle of some pretty cute games. They were pretending to be carpenters at one point, then doing there own version of the doctor game in which Cam was the patient and Ryan was obviously a surgeon, using a battery operated drill on my littles belly! Cuteness! Then we almost got them to fall asleep while watching Toy Story 3, but 40 mins was all they could take! Oh well, they did pretty good together and we even got a few pics of the three cousins together, possibly for the first time!! Not great pictures, but pictures, none the less!



Friday, July 22, 2011

Health Update

Nothing really that exciting, but might as well journal whats going on so that later in life, I can remember. So, the past few weeks have been ridiculously busy/stressful/hard. What ever word you want to use, its been that! I have been in and out of the hospital 3 times in the past 5 weeks with doctors appointments coming up more times then ever before. This past week, I have had some testing that is necessary to decide the next step in what we hope will be the treatment for my life long epilepsy. On Monday I was released from the hospital, just in time to make it to a neuro psych test that was to take place one street over in the Longwood area of Boston. The test was scheduled for 9am, and even with my release procedures being expedited, I still didn't make it in until about 1:00. The doctor was just happy that I was able to make it in. The test was about 5 hours long and sort of a memory/IQ sort of test. I don't know the exact reason for this test, except that it will show what part of my brain works up to par and what areas may seem to be slower (although I don't have a learning disability as that sort of sounded like!) The people were super nice and the test was sort of fun, as odd as that sounds. Hopefully the result report will be back to my doctor on the quick side.

So after that test, we finally got the babies back, but after increasing some new meds that day, I got super sick that night and on and off for the next few days. I think it was my body just getting use to the new dose. I "seem" to be doing fine with them now (a smaller dose).

On Thursday was my big day of testing. Mark and I left the kids with my mother in law around 7 that morning, dove in to Charlestown and spent the day there until around 5:30. The first test was called a MEG test, in which they put a cap of 70 electrode leads on my head and slid me into a sort of MRI-like machine and asked me questions in there, which I answered by pressing buttons. The test took 3 hours (good thing I peed first!!) but they were able to find the area which was of concern. This machine only exists in 20 other locations in the US and at this location is only run twice a week, for only 2 patients each week. The next test was an interactive MRI, where I was slide into an MRI machine had to do things such as look at words or pictures and answer questions about them with buttons. This was super loud and super uncomfortable, but the 2 hours seemed to go by fast. The final test was called a 7 Tesla MRI which is so new that it has not even been approved for clinical use, but takes amazing pictures of the brain in depth, the most intricate pictures that have ever been seen of the brain. There are only a handful of these machines in the US (only one in MA) and is only run once a month. So, I feel very lucky to be one of a very small amount of people who's case is believed to benifit by using this machine. Obviously, now we are going through a waiting game for the reports for all of the tests to be completed, but I really, really hope that they find something that will be helpful in my case. The doctor even said, we are like the opposite of what others want. Most patients do not want to find something on there brain because it can sometimes lead to sickness or the like, while in my case, we (us and the doctors) actually want to find something wrong because that means it may be able to be removed through surgery and potentially cure me of my issues. I hope that this will be the case!!!!!!!! I have been given such a positive outlook from my doctor that things will be fixed that I am running on her opinion. Please, if you are reading this and it is your "thing" to pray or wish positive thoughts for people, please add my family to your list. My life has been put on hold for the time being and it is wearing us out. I just want it done so all my energy and positive personality can be put back into what I want it to be put into: my kids, my family, and my friends. I miss them and want them back. Thanks for listening (or whatever reading a blog does! :)

And I promise, pics of the babies will return soon enough!!!

Sunday, July 17, 2011

And here I am again!

Ha! Spending my weekend at the Brigham and Women's "Spa". While I'm here, being monitored for my epilepsy, my kids are lucky enough to be spending the weekend with their Mimi and Papa down on the Cape. Aren't they lucky little things? I had a bad few days and after a a few calls back and forth with my neurologist, it was suggested that I go to the ER. So that was on Friday. Since then, I've had some tests and been hooked up to a semi-permanent EEG machine to watch all that goes on in my funny little brain. But wouldn't you know, once I got here, where I am supposed to be, I'm doing fine! Seems to be the way!! Oh well, hopefully the medicine changes that have been taking place will slow the seizures down and allow for life to proceed semi-normally! I have a neuro-psych test scheduled for tomorrow that I was sure I was going to have to miss, but after mentioning it to the nurse, they are making special arrangements to be able to get me to the test tomorrow! Those tests are extremely hard to get appointments for and I just want to get this surgery ball rolling!! I miss my babies and just want some answers! Positive thoughts!! More updates later!

Saturday, July 16, 2011

Just swinging around!

So a few weeks ago, or maybe months, the neighbor at my dad's work was planning on throwing out a pretty nice swing set. My dad jumped on the opportunity to have his guys paint and upgrade the swing set and set it up at our house. Our house, mind you, has a super small yard with lots of work left to do on it, but who cares for now, right?

So after all was said and done, we have a swing set in our yard! Complete with two adult swings, a baby swing and a ladder leading to Cameron's "fastest slide ever!" We have been playing on it or weeks, but this was the first time we tried out our little peanut on the swing. Tell me her reaction to this swing isn't the cutest look ever? I could just eat her up, I practically do every time I look at her! So, pictures here you go:

First time on, with Cam pushing her from the front made her laugh hysterically!!


Do we like the effect?
Bonding on the swings! Love!

Wednesday, July 13, 2011

Avery Cate is five months old!

Wow, this is going so fast!! I don't remember it going this fast with Cameron! I feel like I've had her forever and hardly remember life with out her, but it still feels like I had her last week! She's getting to be such a big girl now, but still a peanut! A month ago, she weighed 11 lbs 13 oz (13%!) and was 24 inches, so she's a little bigger then that now. Maybe 12.5? She's still in 0-3 clothes for the most part, but can wear some of her 3-6's now, which is good cause she's got some cute ones! She's eating 5-6 4 oz bottles a day and sleeping through the night like a pro (fingers crossed that it stays that way!!). She's a really happy baby and never really stops smiling and laughing unless she's crying, which doesn't happen all that often. Cameron makes her laugh more then anything else, even just by smiling at her! It practically makes me cry its so cute how they love each other! She's rolling like a pro and has awesome neck control, although sitting up isn't happening yet. What else? She's still napping in her swing, really only because its convenient for me. And because she'll stay asleep there for a couple hours, while in her crib it's only for like 45 mins. She really is just a precious little baby and I'm so blessed to be chosen to be her mommy (Cameron, too, of course, but this post is for her!) We are a lucky little family to have each other! Love, love, love!

This picture is from tonight, around bedtime, after I realized I had forgotten to take one! Can't tell her size, but it works.




Sunday, July 10, 2011

Some cute pictures of the week!

I broke out the point and shoot this week. Not the best quality, but at least I got some that I wouldn't have gotten if I had to lug around my huge bag with 4 lenses in it! Just a peak at my uber cute babies in our daily life. I can't get enough of there loveliness!!!

Cam and cousin Ryan drinking from there big boy cups.
Avery watching from her exersaucer
Hair swirl and bald spot at 4 months

Homeade pops
Pretty girl
Drinking from the hose
Two weeks apart
Tickle Tickle
Closest I could get of all 4
Play ground





Wednesday, July 6, 2011

Happy Fourth of July!!

Happy Fourth of July!!! It always seems like this weekend is the real start to the summer, and this year, this weeks weather was practically the first of actually summer temps and sunshine! So, even though we would have anyway, we decided to go down to my parents Cape house for a long weekend. We left on Friday afternoon. The kids were excited for the trip. I even got them to sit still for a minute, the same minute!!

On our first night down, we went out to dinner at the Court Yard in Falmouth. Its super cute with a fountain in the center of the outdoor eating space. In the water, they have these battery operated fish that look super real at first sight! Cam was obsessed with them He had everyone there watching him and laughing. He thought they were real at first, but after realizing they were not, he would grab there top fin and let them flop around in his hands. We loved it, even though he was probably breaking the rules!

Saturday morning, we decided to start the day by going to this cute toy store in Falmouth. We got Cameron this cute little tee-pee to have as a little play house while we are on the Cape. He loved playing in it. Avery got a new lovey that she won't put down! After a stop at a cupcake shop, Mark spotted a go cart for sale on the side of the road and had to sopt and buy it. Yippee for me... So that took up a bit of our day!! Cam and all the other boys staying at the house had a blast playing with it around the neighborhood. (Cam just 'tended to drive it "To loud, Mommy!")
We played with his new sprinkler with his cousin Ryan, who I failed to get in any of my pictures!! He was there, I swear!!

Avery watched from a distance. She's not such a fan of the water, even in a tub yet! She's gotta learn to love it someday. We are a fish family, through and through! She had fun watching regardless!!

The next day was July 3rd, which was when most celebration things were happening around us. Our friends Steph and Justin and their kids came down. We went to the beach. The water was chilly, so it took Cameron a litle while to get used to it! Until my dad came over with the jet ski. Then he was all over that! In this pic, I promise Mark was right there, just cropped out, and they were not over their head! :)

When we got back to the beach we got the kids into there patriotic clothes and had a BBQ. Once it got dark, my brother set off a whole bunch of fireworks from our beach. These were the fireworks, but Cameron and Avery both fell asleep before they were set off, so I went and saw those, and when I came back, Mark went and watched another set a few beaches down.

On the actual Fourth of July, we went to Falmouth Harbor and had a picnic and watched the boats go by. Doesn't Cam just look like the classic All American kid here? We all had a blast the whole weekend!! Can't wait to back and maybe do some tourist stuff! We don't do that alot!