Finally, an update

Sorry I've been neglecting my blog!

So we started Keppra, and it changed his behavior to the point that it was interfering with his therapy. He would just scream and cry and would not stop. So I called his neurologist and asked if I could wean him off of it because he had never really even had a seizure, and it was affecting him so badly. He said yes (and wants us to come in and talk about other meds - not sure I like that idea) and while Joey was coming off of it, he had a seizure :( But I still think it was BECAUSE of the meds. He has been off of them for a while now and is back to his happy cute self. :) Oh, and his favorite movie is The Sound of Music! It's so cute when he watches it :)

Results

Well, the EEG showed some abnormal spikes in the lower left part of his brain. So now we are the proud owners of Keppra and Diastat. He has never had a bad seizure, just little partial ones. But the neurologist seems to think he is at high risk for epileptic seizures so he wanted us to start Keppra. I hope Joey doesn't have any of the behavior side effects, he is such a happy guy and I don't want him to start being cranky or aggressive. :(

EEG

Joey had an EEG on Wednesday. The reason we did this is because he had an episode a few months back that I think may have been a partial seizure. He had been acting himself at all that day, only had like one bottle, and slept pretty much the rest of the day. That night I woke him up to get him to eat. He drank about half, and then didn't want anymore, so I didn't push it. About 15-20 minutes later, he threw up. Right after that, he went completely out of it. For about 10-25 seconds he wouldn't respond to me at all. I shook him gently, snapped my fingers, clapped my hands, all while calling his name, and he didn't look at me at all. Once he came out of it, he wasn't fussy or anything, he just fell asleep. And slept all night without waking once. So that makes me think it was a seizure of some sort. We go back to the Neurologist this coming Wednesday to get the results, so I'll update then. If any other Hydro moms are reading this, I'd love to hear your opinion on whether or not you think this was a seizure!

I have a wonderful letter written by my blogging friend Jill. She wrote a letter meant for moms who have gotten the same diagnosis as us with Hydro babies, its an amazing letter of comfort. I just wanted to share it with you here.

Well...

it's been a long time since I updated! Joey is just chugging right along :) He is doing really well in speech therapy. He has already overcome most of his feeding issues! His therapist says he is now eating just about right for where he is physically. Not crawling yet, but sitting up unassisted, and rolls around like crazy. He still hates it on his belly, so I don't know what we are going to do about crawling. Maybe he will skip it and go straight to standing and walking!

We just got back from a weekend stay in Gatlinburg in a big cabin up on a mountain. It was so beautiful! It was a 4 bedroom cabin, with a pool table, arcade games, wrap around porch, and a hot tub! My parents came, and my brother and his wife, and their kids. It was tons of fun for Emmy, she had a lot of fun playing with her cousins. My mom planned a tea party for us, it was so cute! She found some cheap play dresses and hats, so the girls loved getting all dressed up. Joey hung out with daddy and papaw and Uncle B outside, he loved it! He loves being outside!

Joey having his morning bottle with Grammy, out on the balcony.

The view of the mountains from the balcony :)

Emmy and her cousin, Marlee, all dressed up for our tea party!

Hi!

Ok, finally an update! Joey is doing great :) Still getting PT and OT, and I think we will be adding Speech Therapy because he is having some feeding issues. He doesn't like pieces of food so we are still doing baby food purees. We also have a new toy, a stander. He actually really enjoys it! He is low muscle tone and just can't seem to figure out how to make his leg muscles kick in and stand himself up. He does it in my lap sometimes, but never on his own. He is still not crawling either, but rolls all over the place. He also just had his SECOND hair cut! He has some long curly hair that I LOVE, but he gets hot really easily so we had to cut it so he would be more comfortable. He is such a happy boy :) My sweetie!

Happy Mother's Day!

May your day be blessed! Hope you all have a wonderful day filled with love and kisses from your little ones! :)

Almost time!

For my trip! I'm so excited to make one of my dreams come true. Seeing the space shuttle is something I've loved for so long. I watch every launch on NASA TV. I've always been fascinated by space related things - and now I get to go to the best place in the country to see what the US has accomplished over the years. If I could be an astronaut and go into space I would do it in a heartbeat!!!! (Not to mention that I'm getting my first mommy weekend to myself since before Emmy was born!) SO SO SO excited!!!

One year ago today...

My sweet boy came into this world!! It's been an amazing year. Wow, I can't believe it's been a whole year! I remember sitting in the triage prep area getting ready for my c-section, and having no idea what was going to happen. I was scared, nervous, and excited all at the same time. I wanted so badly to meet my little guy, but I was so scared at what was going to happen, worried that he was going to have a really big head, scared that he was going to have a lot of problems. They took me into the operating room to get my epidural, and I had a really rough time with that. The anesthesiologist was totally cold, he had no bedside manner at all. He kept telling me to lean over farther, but that's just slightly impossible when you have a huge stomach in the way. When he finally got it in, I started feeling sick and they had to give me medicine to keep me from throwing up (yuck) but I made it through. I was so out of it from the meds, but I made myself stay alert so I could hear what was going on. I heard them say they were pulling him out and then I heard him cry! It was the most amazing sound EVER. They took him over to get cleaned up and let my husband go over and watch, and then he got to hold him before they took him away to the NICU. He brought him over to me and my first thought was that he looked NORMAL. He was so beautiful, I was in tears. It was such an amazing day! And now here we are, a year later, and he is absolutely thriving! He is about three months behind physically, but other than that he is so smart! I am so so proud of my little man :)

Pics to come!

Happy Easter everyone!

I'm sure we will all be hunting for Easter eggs with our kiddos today, but let's not forget the true reason we celebrate Easter. Jesus Christ has risen today! Alleluia!

Hope all of you have a happy and blessed Easter!!

(will add a pic of the kiddos later all dressed up :) we were lazy this morning LOL)

I am so excited

I am getting my first real, true mommy break! I haven't had any REAL time to myself since Emmy was born. I am going to Florida BY MYSELF and meeting my parents there to do something I've wanted to do since 5th grade - watch the Space Shuttle launch! Ever since I went to space camp when I was 10, I've loved all things Space related. I even took an astronomy class in college as one of my electives. I've watched almost every launch online and read lots of space books and websited. I am soooo excited! The best part about the trip is that I will get an entire day to myself once I get there because my parents won't be there until that night. So I rented a car so I won't be confined to the hotel until they get there. I treated myself to a convertible! I will be able to cruise the coast as much as I want, go shopping, sit on the beach, anything! I'll be posting lots of pics once I get back of course :) Yay!

Hard to believe

that my baby boy will be a year old exactly one month from today! This year has absolutely FLOWN by. He has done so much more than we expected initially. He is such a little miracle!

It's almost St. Patty's Day...

So I thought I would share with you my favorite Irish Blessing (Yep, I'm Irish) :D

"May the road rise to meet you,

May the wind be always at your back,

May the sun shine warm upon your face,

May the rains fall soft upon your fields,

and until we meet again,

May God hold you in the palm of his hand."

Updates

Joey started OT last week. Hopefully that combined with PT will help him progress faster. He is growing so fast and getting so big!

Happy Boy!!!

Stuff

... I can't seem to make up my mind for my background!!

Not a whole lot is going on right now. I guess that's good though, because that means that everyone is in good health! Joey is chugging right along with his PT. He is still holding himself back though, by being such a lazy guy! He is starting to get a *little* more interested in exploring, though. When he lays on the floor he scoots himself around in circles. He also does that in his sleep. There have been times where I get him up in the morning and he is in the opposite position I put him in when he went down for the night! That's a good thing though. Baby steps. Hopefully soon he will get stronger and tolerate more tummy time.

I *will* start posting more pics! I am so bad about that. All of you need to see my cute little (big!) chunky boy :)

Happiness

"When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has been opened for us."

Helen Keller

:) Great quote!

First Steps Evaluation

Joey had his 6 month evaluation with First Steps. I can't believe he's been getting PT for 6 months already! He has come a LONG way since he first started, but we still have a ways to go. His therapist has put his gross motor skills at a 5-6 month level (he is actually 9 months). He still can't sit unassisted, only rolls to get off of his belly (he HATES being on his belly), won't get on his hands and knees, etc. So we've gotta get him exploring his environment more. They recommended we add OT to his therapy sessions. Hopefull that will help and he will get more motivated to MOVE. He is so lazy :)

New Year, New Background

I decided to change things up a bit :)

I'm feeling very optimistic about this upcoming year. 2009 was tough - not bad, just tough. God really tested me by giving me so much to deal with, but I believe I have come out a much stronger person! I am so grateful for everything I have in my life - a wonderful husband, amazing children, and an awesome family. I'll never take anything for granted again! :)

Slacking!

I don't know why I can't make myself keep up with this blog. Nothing is really happening to blog about I guess... Joey is still doing awesome. He has his 6 month evaluation with First Steps (Early Intervention program in KY) to see if he needs any other therapy added in at this point. I don't think he does really, he is still only behind in his motor skills. He hates being on his tummy, not because he can't lift his head or anything, but because it makes him work! He is a lazy baby :) He would be super happy if he could just lay on his back all day, or sit in his jumperoo. He LOVES that! I'll have to post some pictures soon - he's gotten so big!