Plugging along!

The past couple of weeks have been very normal! I love it. We have our 6 month check up for baby Eddie and it went great! He weighed in at 16.6lbs and 26"! I cant believe he's already 6 months old! He's eating like a beast 3 meals a day (usually). Cathing is going really well, I think I've got the hang of it finally. Physical therapy is going great also, this week he's showed so much improvement. He's close to sitting up on his own and we've been working on stretching his front hips and he seems to have much more range this week. Much more flexibility. He's even putting good pressure on his legs while "standing", now that's his hips have more range he can stand with his feet a little flatter. I'm so proud of my little Warrior!

Bella and Eddie went camping this weekend. Great for them, not so great for me. I've been so lonely here without them. The house is way too quiet! Thank god they come back today! September is a bit busier
So I'm sure I'll have more to blog about!

Have a great end of summer!

Picnics, Picnics and Olympics!!!

I know it's been a few weeks since I've posted, honestly there hasn't been much to post.  Which is a great thing since that usually means life is pretty boring. Although I wouldn't say things have been boring around here we've just been so busy between hitting up multiple parties on the weekends and watching the Olympics.  Last weekend was baby Eddie's baptism. Now I know that anyone who knows me probably gets surprised to hear that I had my child baptized but hear me out first!  We've been attending church a lot lately, initially as a chance for us to do something as a family and if nothing else have the chance to reiterate and reinforce lessons in morals to Bella and ourselves.  Now it is no secret that I personally don't believe in the literally teachings of the church. I don't believe in a God necessarily but I do believe in God in the figurative sense of the word. I believe in a higher state of being within oneself.  Probably more along the lines of a Buddhist belief.  I am beginning to find my own path within the church.  I am able to take what I hear in church and translate it to an extent to my own belief system.  I am finding a way to meditate and "pray" within my self my way.  Honestly isn't that what we all do on some level.  We are all different so we all have different beliefs, no two the same.  Isn't it about finding a way to connect and live life to the best moral standing that is important? I'm slowly figuring it all out for myself and honestly can't guarantee that it will lead me in the way of church or something else.  Lately I need something to help me find that faith in myself to help me find a place.  I don't think that will be in the way of Jesus or God but if anything self realization.

So enough of that, about all our partying!  Baptism was Sunday and we had a HUGE party at my mom's afterwards! After a little bit of rain (which I firmly believe my Uncle Steve sent to us from the heavens since it was also his birthday and I can't remember a trip or event with him that it didn't rain, it actually became a running joke!) sunshine came through and it was beautiful the rest of the day.  Everyone seemed to have fun and we had so many awesome family and friends there.  It is always wonderful to see how many family and friends we have to support us and our children!  We also had a bunch of other picnics this weekend which has been SUPER exhausting but lots of fun.  On top of it all Bella has a little cold and we are all very OVERTIRED! I'm thinking today will be a day of recovery and cleaning the house!

Us with Fr. Bill and baby Eddie's God Parents!

We've been watching the Olympics like mad around here and we are totally Team USA in everything but I have to say we have been very Team South Africa this week! There is a runner named Oscar Pistorius the name alone makes him a BAM! For those of you who aren't Dane Cook fans (Bad A** Mother, well usually there's a F at the end but you can use your imagination!) He has done something no one has ever done he ran the 400 in the Olympics as a double amputee!  He is a gold medal Paraolympian and not only ran in the Olympics but made it to the semifinals!  I posted a video about his story and I encourage you to watch it.  He's extremely inspirational no matter who you are.  Once Eddie and I heard about him it immediately struck a cord with us.  I kept thinking what an amazing mother he must of had that could instill in him the confidence and will power to get up everyday and show the world that everyone is different and that "disabled" doesn't mean "unable"!  I posted on Twitter and happened to @ him and within 10 minutes got a direct message from him! Which happened to be in the middle of the night in London! It wasn't a particular personal message just a quick line but Eddie and I were jumping up and down here feeling like tweens getting a message from their favorite boy band!  To us Oscar Pistorius is a glimpse of everything our little warrior Eddie can do in the future, ANYTHING!  Then I tweeted the picture of the direct message and said that even though he probably sends out 1000's of those same messages it meant so much to us! 10 minutes later ANOTHER message!  I felt like such a geek getting so excited, but he is officially a favorite athlete for us (sorry Wes Welker, but I still love you too!).  We'll be watching him in the 400 relay also and even though we'll always cheer "Go USA" we'll be cheering "Go South Africa" too!

 Here's the link to the video:
http://www.nbcolympics.com/video/track-and-field/oscar-pistorius-on-today.html

My DM with Oscar Pistorius!

Making history at 2012 London Olympics

Hey, I got this!

I remember when I first had Bella I was so overwhelmed as a new mom.  I just couldn't get the hang of it, until one day when I just got it. I don't remember the exact moment but I remember that I felt like "Hey, I got this!" and then I was a pro.  When we found out we were having a second little one, I thought to myself no biggie I'm a pro now.  Maybe I would've slipped right into it under other circumstances, you know the one's where everything goes the way I plan! (Did you get the sarcasm there?) Well, it didn't quite go that way.  I have spent the past 5 months thinking, What the hell what I thinking? Two is harder than I thought! This is complete chaos! I'll never get the hang of this! Then last night after we got home from 6 flags, everyone was asleep and I was going over the day and it finally hit me! Hey, I got this!  We managed to balance a baby that easily overheats, (on a 92 degree day by the way) a catheter regiment, and a 4 year old whose been having meltdowns left and right lately!  Amazingly (with a lot of help from Nana, Gramma and Grampa) we did it. Not without a few hiccups we did it!

We packed a good sized cooler with ice packs, frozen mini water bottles, frozen washcloths and teethers.  A stroller fan. Lots of formula bottles and a bunch of catheters. Suntan lotion, hats, bathing suits and extra clothes! Of course this was mostly packed the night before with my nice little list next to the bag! Thank you type A personality!  As we headed into the park it seemed like we'd never see an actual ride, since we stopped multiple times to get ourselves situated.  After a couple kiddie rides for Bella we headed to The Grove where we had free food and soda/ice tea.  We were with Eddie's work group (we'll Eddie, my mom and my dad's work group) Everyone works for the same company. It was great because everyone ate and while we were there we got to use the bathroom there to cath the baby. It worked out well since it was AC and cleaner than the ones in the park. I was surprised that I managed to cath pretty well even with people in and out of the tiny bathroom and the hand dryer going off every two seconds thus scaring the baby.  So mission accomplished! We were off to rides again. Bella did so great, she barely whined the whole day.  She was even really patience while the adults wanted to go on rides.  We did have a few hiccups, like losing my drivers license! Boo!! Otherwise, a successful day! I even went on a few roller coasters, which is totally out of character for me! 

So, it turned out great! Baby Eddie didn't overheat at all! He even napped at his regular times.  Bella had fun without any major meltdowns (she even cleaned her room this morning, like really cleaned it!).  Both kids came home, bathed and were in bed by 9:00!

Guess what SB, I got this!

Gramma and baby Eddie on his first ride, the carousel!

Nana and Bella on the teacups!

Cowgirl Bella (I think her TN came out)

Us with the characters (and Cousin Mikey as Sylvester!)

Bella's favorite ride, the swings!

Baby Eddie staying cool!

Just a little brain surgery!

So I'm saying this here but don't let Eddie know I said it or he'll remind me every day!  I've realized the more you freak out about something the more it's usually not that bad!  Surgery was a breeze last week.  He went in at 7:30 and and hour and a half later the surgeon came out. I was all freaked out and sick over it since he said it would only take about 20 min.  In true Kristin fashion. I was upset about nothing since he said the actual procedure only took about 10 min.  I must have looked a mess because I felt like I was going to pass out from the relief.  He asked if I was okay. Oh gee!  Then off to see him in recovery where again I was all worried for nothing.  When we walked in he looked up and gave us a big smile! Like "hey ma, just a little brain surgery!"  This kid continues to amaze me.  He only had to be there for that day! They let us go home late that night around midnight, and the only reason we waited that long was because he needed 3 rounds of antibiotics spaced out every 8 hours.  Plus, they also didn't even need to give him any narcotics. Just a couple of rounds of Tylenol. I thought for sure the next day would be brutal for him as far as pain.  Nope! I gave him one does of Tylenol in the am just in case but he didn't seem uncomfortable and nothing after that.  I did give him some at night because I thought he might be uncomfortable but it turns out he is just having trouble going down lately.  (We've had a few tough evenings lately.)  Nothing too bad just a little fussiness right before bedtime.  Good thing one of us has enough patience left by this point to rock him to sleep while he whines.  Friday morning we started cathing.  NOT FUN! Although, again in true Kristin fashion I was all worked up for nothing.  It isn't that bad and by yesterday he was getting better at sitting still while I'm doing it! The first few days consisted of either me getting pee all over me or getting no pee at all.  Yesterday I got it 3 out of 4 times! Without much of a struggle.  I feel kind of bad though since Eddie hasn't really done it yet.  He's watched me but my control freak self takes over and wants to just do it.  I think now that I'm getting the hang of it I'm ready to let him start trying.  I just figured since I'll be doing at least 2 or 3 of them a day I should get the hang of it first.  I'm so thankful though that he jumped right in right away and wanted to do it.  I know most dad's would not only be freaked out a bit but I also know a lot of Dad's who don't even change diapers.  I'm hoping once we get it down it will seem easy for others (sitters) to want to learn how to do it.  I don't expect anyone to be comfortable with it.  So I take no offense if our babysitter list starts to dwindle.  To be honest, if it wasn't my cutie I would probably be a name dropping off of someones sitter list. 

Baby Eddie headed to the PICU from recovery

We headed to the Chicopee Fest of All Saturday night to watch a friends band "Trailer Trash" play and watch the fireworks.  It's a 5 minute walk from our house to the park which makes it nice.  I didn't stay the whole time since lately I've noticed baby Eddie is extra sensitive to some stimulation like loud noises or bright lights.  We were told because of his Chairi that this might happen.  It could just be because he's a baby too either way I thought 1. it would be easier to cath at home then there and 2. the fireworks would be pretty loud and scary for him.  Plus, selfishly I hate going to the fireworks.  I'm not a fan of loud noises or crowds. It's not a favorite place of mine. So while baby Eddie slept I watched them out of my front window.  I could only see the high ones but that was good enough for me.  Watching the idiots that missed it sit in traffic outside my house looking for a parking spot was much more fun anyways!

Last night we had our friends Pat and Hannah over with baby Eddie's bestie baby Elias.  They were so funny touching each other and inspecting each other.  We've decided they love each other!  They're only a day apart so they have to be best friends forever like it or not!

Elias and Eddie "hugging" and checking out the camera like we're crazy!

Hope everyone has a "cool" and fun week.  We'll be at mom's pool all week keeping cool! Hopefully a couple of play dates to help the time pass!

Tough week.

So all the news is in. Where to start? How about with Fridays Shriners appointment. We had the urodynamics test done Friday and after getting peed all over and watching my poor little guy scream and scream results show a neurogenic bladder. Which basically means that his bladder does void but it also is constantly contracting. With this causes a reflux into his kidneys. If not treated he has a huge risk of kidney infection or UTI and the bladder muscles wall hardening so much his bladder would be too small to hold anything. So the only solution is to start a cath program. This consists on having to cath his 4 times a day for now to help void his bladder completely. Plus, a medicine called Ditropan which is basically a muscle relaxer for the bladder. This medicine has a side effect of constipation so he'll probably need to also start a bowel program soon. Something like miralax or enemas. From what we've been told this will never get better. It will either stay the same or get worse and odds are it will get worse. I've talked to a lot of other people with SB and some who cath and they say that at some point usually around 9 or 10 years old they can cath independently. So that's good. For some reason this is really freaking us out. We have handled everything with such strength and ease but this week we're losing it. Mainly me. Maybe because we expected everything else but thought he had weak bladder/bowel muscles so never expected this. For almost a year now I feel like I've handled everything with strength and hope This week I feel like I've lost my way. I just need to find that faith in myself that I can do this. That I became a mother to take care of these beautiful children and have faith in my skills as their mother.

Tomorrow is his shunt surgery. We go in for 6am and fingers crossed will only be there one night. I really hope it'll only be one night in the PICU. I really hate the PICU. We have loved every aspect about Baystate but honestly did not have the best experience in the PICU or NICU for that fact. It's not very comforting and there's no where to sleep. The PICU had like 4 or 6 beds and all crammed in one room. One kid coughed and screamed all night last time and baby Eddie got no sleep. I hope this time is more soothing for him.

We will start cathing him regularly later this week after things are headed back to normal.

Positive note is that we got the ok to start trying a little cereal with him. They are ok starting early to work with his EI and PT so he can get the best start possible. Plus we've seen he loves the pool! I'm thinking of asking our PT to come to the pool for our next session.

I'll check in later to let everyone know about the surgery. Thank you all for your unwavering support!

A lot of news...

My Aunt was here for a visit from TN

My sister-in-law and Eddie

My adorable grandmother

Me and my "little" brother

So we've had a lot going on in the house the past couple of weeks!  I'll start with the Bowling Event we had last week. It was so much fun and we raised $600 dollars from it! I can't believe the amazing support we have! We are so lucky for the friends and family in our life! 

We also received the MRI results and although they weren't exactly what we had hoped the good news is that the shunt is working properly and still in place but has slipped down about 3cm bad news is since it's so mobile he'll probably need another surgery to suture it back into place.  I'm sad about this but hoping it won't be as major as the last one.  I'd hate to see him that uncomfortable again.  We'll see the neuro tomorrow for more info. Fingers crossed that if there is another surgery our hospital stay won't be long and hopefully we go straight to the pedi section and get to skip the PICU.  The PICU is no fun. 

Friday we had the VCUG test done.  It's when they fill his bladder with a catheter with contrast die and do xrays to see how he voids it. Check to see if he can void on his own and if there is any reflux into his kidneys. This was NO fun! Plus side he definitely has feeling "down there"!  He did not enjoy any of it! Especially having his legs held down.  They were so surprised how strong he was. Take that SB!  The results were kinda unhelpful.  The radiologists said that there was a small amount of reflux to the right kidney.  From what I hear this test isn't real reliable since you're forcing fluid up instead of down and while they are screaming (and he was purposely holding his bladder, he had no problem voiding once that catheter came out. They had to have someone come clean the room afterwards).  I'm hoping the little bit of reflux is just from all of that.  Plus he's never had a UTI and never had a problem on his kidney ultrasounds, so that's a positive sign! We have his urodynamics test this Friday and will have much better results then. Fingers crossed again!

Our "Warrior Eddie" team!

Saturday was the Walk N Roll for Spina Bifida in Canton, MA up near Boston.  We had so much fun, despite the 40 minutes of traffic on the way there! Leave it to MA to have traffic that barely moves that long for what..... NOTHING! A lane merge! Oh well, we still made it in time and had a fun little walk. Total funds raised by Team Warrior Eddie was over $1500! Thank you for everyone who donated! Next year the walk will be in Stanley Park so I hope to see all of you in this picture!

Bella with her teachers

Bella with her student teacher Miss Lyndsey

Bella and her other student teacher Miss Janyce

Bella and her "diploma"

Yesterday was Bella's preschool graduation, and let me tell you she is quite the performer!  She is hilarious! Singing loudly and at one point we caught her on stage mouthing "I'm just so happy I could cry" and then fake crying. She's too much! I was so proud of her a a little emotional about how big she's getting, and lucky me I get to do it all over again next year since she had one more year in preschool. Thank god! Yesterday was also Eddie's first day at the new job! Ahh it feels good to say it! I've kept from announcing it until everything was official, I didn't want to jinx anything! It's still with the same company but it's in a new position and a new location.  It's literally the perfect job for him and perfect hours for our family. It's also only 10 minutes from our home. He's very excited!

I'm also asking for everyone to keep my grandfather in their thoughts, he was rushed to the ER yesterday for a pancreatic attack.  They are keeping him there a few days so fingers crossed again for a healthy outcome!

Sooo, this week is busy too! Tomorrow we have a neuro appointment in the morning and a 4 month check-up in the afternoon. Friday is a trip to Shriners for the urodynamics test.

Ooohhmmmff {big sigh}..... I think that's everything! Sorry for such a long post today!

MRI

 *Eddie snapped this photo while I was "rocking" baby Eddie to sleep. (ready to fall asleep myself!)

Today was our big MRI day. This is the first one baby Eddie has had since he was born.  To recap, the reason we had one done today was because baby Eddie's shunt has slipped down significantly and the neuro would like to make sure it's not causing any problems.  Once he receives the results he will decided if he needs another surgery to correct the shunt.  I was so nervous about today's MRI, mainly because they had to sedate him for it and I wasn't sure exactly what to expect.  After the last surgery I was so scared to see him come out of sedation.  Luckily it was a much easier experience.  I guess I should've figured that since brain surgery and an MRI are at quiet the opposite sides of the spectrum of procedures.  Unfortunately for the poor little one I had to wake him at 4 to give him a bottle of pedilite and then keep him awake as much as possible until the MRI at 8. He did manage to sneak a quick 20 min cat nap in there while I was getting Bella ready for school.  Once it was time for the MRI he was so exhausted that he probably didn't need much sedation anyways he was ready to pass out all on his own.  They gave him the medicine and wrapped him up all warm and put him in my arms.  Before I could get comfortable in the chair to rock him, he was asleep.  The MRI was quick and he woke up nicely.  He was pretty out of it most of the day, he snoozed on and off all day (actually he's sleeping again right now as I write this, right through a feeding).  We should hopefully hear something about it next week.  As usual I'll probably call the neuro in a few days to check up on it.  There's that impatience again.  All in all it was relatively painless.  We're looking forward to a fun night of bowling Tuesday night for the fundraiser and I promise I'll post lots of pictures on Wednesday!