Monday, June 25, 2012

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!

Tuesday, June 19, 2012

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!

Friday, June 8, 2012


 *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!

Monday, June 4, 2012

Updates Updates Updates!!

*I caught this little moment the other morning and it totally melted my heart!

I have spent most of my teenage and adult life repeating over and over again "You'll see me in the gym when hell freezes over..." Well, hell has frozen over! I have can no longer put off the inevitable. I am not 20 anymore.  Where I used to be mistaken for a high schooler I am now mistaken for a college kid. Not that I'm complaining, college would still at most make me 22 and that's way better than almost 30! After the second child, your body does not just bounce back. Yes you can lose some weight but things just don't go back where they are supposed to be without a little help from our old friend "the gym".  I will no longer be sharing clothes with my 16 year old cousin, which is the worst part since she has awesome hand me "ups".  So I have started going to the gym. Partly because I can not in good conscience get on a beach like this since that would make me the woman I talk about at the beach and partly because if I spend one more month with a gym membership without using it my husband may kill me!

So off to the gym I've been going almost every other day plus my little workout at home.  I hate to admit that I'm actually beginning to like it. Not while I'm there of course, while I'm there I'm quietly swearing to myself how much it totally sucks! It is a chance for me to have a bit of "quiet" time to myself. By quiet I mean without Bella chatting in my ear every 5 seconds or baby Eddie needing something. I love my mommy time with my kids more than anything but being a stay at home mom comes with not being able to just shut off my brain. I'm always on. The gym is a nice getaway for a few hours a week. 

Friday is our first MRI for baby Eddie and I'm crazy nervous. I'm not exactly sure why but I am a little freaked out that they have to sedate him to do it. I hoping all goes well and we hear that the shunt hasn't fallen so much that he'll need a revision. That would be another surgery and that would just break my heart. I have known that more surgeries were probably in our future but every time we hear there's one it sucks.

Baby Eddie started PT last week and has had another one since.  He did awesome! She was so impressed by how much he can do. How badly he wants to crawl at not even 4 months. Everything she does with him on his tummy she has to hold on to him because he's pushing his legs and taking off. If only we can get him to use his arms too he'll be going like crazy!  She thinks his legs are doing a great job straightening out themselves.  She does agree that he'll need braces at some point but is optimistic that it may not be forever (which is what we heard).  She also said that all his nerves and muscles seem to be working great and that some of his muscles are just too tight or too weak and with good PT we could help a lot of that! I feel like that is so amazing. His little legs have come so far since he was born. All on their own with a little help from exercises.  I'm so glad we pushed for a OT in the hospital to come up and teach us some exercises. They all kept telling us that it was too early and that it wouldn't matter. What do they know? My boy's a fighter, don't tell him he won't do something!

We're really excited about the bowling event we set up to raise money for the Walk and Roll for baby Eddie's team. It's June 12th at 6pm at the AMF in Chicopee. The event site is here Bowling for Team Warrior Eddie! Everyone is invited so feel free to come along! Just email us and let us know whose coming so we can reserve a lane! Also, if you haven't seen the walk website it's here Walk and Roll all are welcome to come walk (or roll) with us!