Well we have been very very busy lately! We have moved to a new apartment and have been nuts packing and moving and unpacking. We are finally all almost over that darn cold we had except for baby Eddie who just has a little bit of a cough left.
Earlier this week we noticed that his shunt seemed to be much lower than before. It even slides up really high sometimes depending on how he's laying on it. So I called the neuro just to have him check it out. Sure enough he said it seems to have slipped about 2cm down. He is scheduling an MRI in the next week or so just to make sure all is ok. He said he sutured the shunt to the tissue so it shouldn't have moved and he also said just in case he left about an extra 7cm of tubing into the ventricles. So hopefully all is well but the MRI will tell us more. Good signs are that his soft spot is still looking great (no swelling) and so is his back. A big downside of the MRI is they have to sedate him which isn't much fun. As long as there is a good outcome it's worth it.
That's about it for tonight, I'm totally beat from all the unpacking and organizing so I'm headed to bed. Have a great night all!
Wednesday, May 23, 2012
Wednesday, May 9, 2012
Hello again doctor!
Another day another doctors visit. At least that is what it seems like lately. My pedi must love us, I think I've single handedly paid his mortgage this month. We visited 4 times in a month. Yes 4 times! We had Eddie's check up, then we visited for a checkup of Bella's feet. Recently I've noticed she has been walking a little pigeon toed and both her ankles roll inwards. The side of her foot actually hit the floor in canvass shoes. She's also been complaining of leg pain. At first I thought maybe I was over exaggerating since I spend so much time staring at baby Eddie's feet. Unfortunately I was right. Her feet or ankles are rolling in so we had to go get her some "good" shoes (we choose a pair of adorable Keen's since they can be worn as sneakers or sandals) also they decided in a few months they'll check her again and probably refer her to Shriners. So..... Shriners did ya miss us? At least we know how to get there.
That was last week, a few days later while we were packing and the baby started fussing so I grabbed him and while holding him noticed he was stinky. Then the craziness began. Both baby Eddie and I were covered in poop! YUCK! When I went to change him I noticed this huge welt on his thigh. It was a big white diamond shape and red all around it. I freaked out and called the doctor. Their guess was a latex reaction.
The next day we noticed it was almost secreting something. Like a sore. I've never seen an allergic reaction like that so back to the doctors we went. Surprisingly this new sore like reaction only confirmed a latex reaction. So I've spent the past couple of days researching latex and racking my brain trying to figure out how he came in contact with it. Finally today I think I figured it out. All this duct tape while packing is all latex adhesive. I could have easily ripped a piece then touched him or even airborne. My poor kiddo.
Good thing is this gross cold is slowly making its way out of this house. I'm thinking once the sun comes out this weekend we'll all feel much better. I'm thinking a giant pancake breakfast is in order! I can't wait!
On a side note, I just want to thank the amazing support group we've had. Everyone from family to friends to even friends of family and friends. I feel like we are lucky beyond words and are so grateful for everything you have all done! I was looking at our new family portrait I had framed for the new house and both Eddie and I noticed that it seems so perfect. That's because we're so complete. I see our little family and feel so complete and at peace. I've never been happier or more grateful for what is in my life. It's been a very difficult road for Eddie and I even before the babies diagnosis, I feel like we couldn't be stronger. This is thanks to everyone whose been there through it all. Thank you!
That was last week, a few days later while we were packing and the baby started fussing so I grabbed him and while holding him noticed he was stinky. Then the craziness began. Both baby Eddie and I were covered in poop! YUCK! When I went to change him I noticed this huge welt on his thigh. It was a big white diamond shape and red all around it. I freaked out and called the doctor. Their guess was a latex reaction.
The next day we noticed it was almost secreting something. Like a sore. I've never seen an allergic reaction like that so back to the doctors we went. Surprisingly this new sore like reaction only confirmed a latex reaction. So I've spent the past couple of days researching latex and racking my brain trying to figure out how he came in contact with it. Finally today I think I figured it out. All this duct tape while packing is all latex adhesive. I could have easily ripped a piece then touched him or even airborne. My poor kiddo.
Good thing is this gross cold is slowly making its way out of this house. I'm thinking once the sun comes out this weekend we'll all feel much better. I'm thinking a giant pancake breakfast is in order! I can't wait!
On a side note, I just want to thank the amazing support group we've had. Everyone from family to friends to even friends of family and friends. I feel like we are lucky beyond words and are so grateful for everything you have all done! I was looking at our new family portrait I had framed for the new house and both Eddie and I noticed that it seems so perfect. That's because we're so complete. I see our little family and feel so complete and at peace. I've never been happier or more grateful for what is in my life. It's been a very difficult road for Eddie and I even before the babies diagnosis, I feel like we couldn't be stronger. This is thanks to everyone whose been there through it all. Thank you!
Thursday, May 3, 2012
1,2,3 breathe!
What a week! We've had everything from anxiety to sighs of relief to excitement to exhaustion! Which all in itself is EXHAUSTING!
Let's see, where to start well anxiety... Last week Eddie had an interview for a new position, it's exactly what he wants to do for a career and the perfect position for him. It's in CT but that's ok we can make that work.
We had a sigh of relief when we saw the babies tiny ventricles on the ultrasound (see last post) and a bigger sigh when we spoke to the neuro a d he gave us a green light to relax! No ultrasounds for 6 months or neuro visits unless something changes. We'll have a baseline MRI done then. I can't believe that things are calming down so much. 6 months ago I could never have imagined weeks with no appointments and a day without having to look over my shoulder. I'm now feeling like its easier to breathe. (I'm sure that some of that is thanks to baby Eddie sleeping through the night most nights!)
We are very excited since an apartment we've been really interested is officially ours! It's so perfect for us and accommodates our family perfectly. It's even really accessible in case we say a while and little Eddie has assistance devices. We're moving in really soon so the next couple of weeks will be full of packing!
We've also signed up to be a part of the Spina Bifida Association of Greater New England's "Walk and Roll" on June 16th. We are excited to participate in such a great organization. Check out our team page and please consider walking with us or donating.
http://www.walknrollsbagreaterne.org/faf/donorReg/donorPledge.asp?ievent=1012563&lis=0&kntae1012563=894BE4A5927A4E00ADCC071D1687BB1C&supId=358744180
Now to the exhaustion! Bella had been sick with a cold which has been no fun at all! Tonight she seems to be feeling a bit better but unfortunately baby Eddie seems to have caught it. I guess I'm lucky that he's gotten this far in cold season without catching one but I'm very freaked out about him getting sick and having the shunt. Inside I know that a cold is just a cold but this being the first time I'm a bit nervous. So between that and waiting to hear about the job for Eddie I'm all anxious again. Geez!
I'm learning through all of these trials and tribulations that I can't control all things and to just sit back, relax and let the universe guide us.
Let's see, where to start well anxiety... Last week Eddie had an interview for a new position, it's exactly what he wants to do for a career and the perfect position for him. It's in CT but that's ok we can make that work.
We had a sigh of relief when we saw the babies tiny ventricles on the ultrasound (see last post) and a bigger sigh when we spoke to the neuro a d he gave us a green light to relax! No ultrasounds for 6 months or neuro visits unless something changes. We'll have a baseline MRI done then. I can't believe that things are calming down so much. 6 months ago I could never have imagined weeks with no appointments and a day without having to look over my shoulder. I'm now feeling like its easier to breathe. (I'm sure that some of that is thanks to baby Eddie sleeping through the night most nights!)
We are very excited since an apartment we've been really interested is officially ours! It's so perfect for us and accommodates our family perfectly. It's even really accessible in case we say a while and little Eddie has assistance devices. We're moving in really soon so the next couple of weeks will be full of packing!
We've also signed up to be a part of the Spina Bifida Association of Greater New England's "Walk and Roll" on June 16th. We are excited to participate in such a great organization. Check out our team page and please consider walking with us or donating.
http://www.walknrollsbagreaterne.org/faf/donorReg/donorPledge.asp?ievent=1012563&lis=0&kntae1012563=894BE4A5927A4E00ADCC071D1687BB1C&supId=358744180
Now to the exhaustion! Bella had been sick with a cold which has been no fun at all! Tonight she seems to be feeling a bit better but unfortunately baby Eddie seems to have caught it. I guess I'm lucky that he's gotten this far in cold season without catching one but I'm very freaked out about him getting sick and having the shunt. Inside I know that a cold is just a cold but this being the first time I'm a bit nervous. So between that and waiting to hear about the job for Eddie I'm all anxious again. Geez!
I'm learning through all of these trials and tribulations that I can't control all things and to just sit back, relax and let the universe guide us.
Saturday, April 28, 2012
Everybody's a clown!
Thursday baby Eddie had his monthly head ultrasound. As I sat there watching the tech scan I actually crossed my fingers behind my back. I'm not sure why I know he's been doing great, but just like every ultrasound when we were pregnant it is very nerve racking. Hopefully these ultrasounds and MRI's get easier! I watched her measure and saw the little points and they were so close about this far * * I got so excited! I've never seen his ventricles that small not even in utero. When I pointed that out she said they were so small she had trouble getting a measurement.. BTW this is a big YAY! We meet with the neurosurgeon on Monday so I'm real excited to hear what he has to say about our little warrior!
Wednesday, April 18, 2012
Getaway!
So Monday we had our 2 month check up and it was perfect! Baby Eddie is now 11.8lbs! I can't believe he went from 5th percentile to 50th percentile! I'm so proud of my little piggy. The doctor said his head circumference is perfect which is awesome to hear since babies with hydro tend to have smaller or bigger HC than other babies. He is also 50th percentile for height too! So all in all he's perfectly average! I never thought I'd be so excited to hear the words average!
The last couple days have been awesome and MUCH needed! I work as a booking agent and was able to book my artist at Mohegan Sun Casino last night and was lucky enough to get a free room for the night! Eddie and I were also lucky enough to get babysitters for both kids! My awesome grandmother took Bella overnight and my very brave and very awesome best friend took baby Eddie! I say brave since she already has a 6 month old! I think she was nuts but there is no way I'm looking a gift horse in the mouth! We headed down there yesterday afternoon and had a fun, long and silly drive down the CT. After getting situated and doing a little work we got a chance to meet up with my parents and gamble a bit! We then grabbed a bite to eat and headed to the venue. The show was AMAZING! It was very cool to see the show and carry around our little back stage passes, I kept telling Eddie he was my body guard. Eddie and I had a blast and honestly spent the whole night giggling and acting like newlyweds. We realized how much we've missed each other. We see each other everyday but with him working 2 jobs and me busy all day with the kids. If we have any time together it's discussing the kids or sleeping. We haven't had much one on one time together. It was awesome! We headed back to the room to get a much needed awesome night of sleep. We had another awesome day today there and headed back to see out babies early afternoon! Boy did I miss them! Who knew one day would be all it took for me to miss them. It was much needed though. I hope we can get a chance to do more date nights soon! We need them.
So all in all a great week and I feel more grateful for this perfect and amazing family that I have! They inspire me and make me want to be a great mom/wife/daughter!
The last couple days have been awesome and MUCH needed! I work as a booking agent and was able to book my artist at Mohegan Sun Casino last night and was lucky enough to get a free room for the night! Eddie and I were also lucky enough to get babysitters for both kids! My awesome grandmother took Bella overnight and my very brave and very awesome best friend took baby Eddie! I say brave since she already has a 6 month old! I think she was nuts but there is no way I'm looking a gift horse in the mouth! We headed down there yesterday afternoon and had a fun, long and silly drive down the CT. After getting situated and doing a little work we got a chance to meet up with my parents and gamble a bit! We then grabbed a bite to eat and headed to the venue. The show was AMAZING! It was very cool to see the show and carry around our little back stage passes, I kept telling Eddie he was my body guard. Eddie and I had a blast and honestly spent the whole night giggling and acting like newlyweds. We realized how much we've missed each other. We see each other everyday but with him working 2 jobs and me busy all day with the kids. If we have any time together it's discussing the kids or sleeping. We haven't had much one on one time together. It was awesome! We headed back to the room to get a much needed awesome night of sleep. We had another awesome day today there and headed back to see out babies early afternoon! Boy did I miss them! Who knew one day would be all it took for me to miss them. It was much needed though. I hope we can get a chance to do more date nights soon! We need them.
So all in all a great week and I feel more grateful for this perfect and amazing family that I have! They inspire me and make me want to be a great mom/wife/daughter!
Monday, April 9, 2012
Defying Gravity.....
We've had another great week and a great Easter weekend with family! This week we got the urology ultrasound results back and to our surprise they came back perfect! When we were pregnant and even in the hospital we were told even with the best odds our little guy would probably need to have a catheter. This is because his lesion is so low that they said it almost always affects the nerves to the bladder and bowel. So we expected that he may not be voiding his bladder completely and they would see some backing up into his kidneys on the ultrasound. Nope! Not this little guy, he's defying all the odds! Also, today was his early intervention assessment where they score him on his development. There's not a ton to score on since he's so little but he passed with no developmental delays and even excelled on gross motor skills! They will still come a few times a month to work with him and more if he starts to fall behind milestones. For now though he's doing great! Take that SB!! We're not out of the woods, we won't ever be completely out of the woods but I'll take every good news as a sign that no one better tell my little Eddie he can't or won't do anything. He'll show you! While sitting and decompressing the past few weeks today I thought of a song from the musical Wicked called "Defying Gravity", here's a verse from it;
'I'm through accepting limits
cause someone says they're so
some things I cannot change
but till I try, I'll never know!'
From in the womb my little guy was defying the odds. When they told us his hydro would only get much worse and then it got less and less and then none until 3 weeks after birth. Or when they told us his clubbed foot and bowed legs were really bad at the hospital and now they have almost done a 180. We know that he still has obstacles but we also know that he's a fighter. No matter what the outcome we are confident that he will take every obstacle with strength and courage and because we see that strength and courage in him we're following suit deciding to find that same strength and courage within ourselves! I firmly believe that this little man has strengthen the love in our marriage and has made us more solid than ever at a time when we needed it the most.
Happy Easter! Here's a couple more pics the first is my silly father and daughter with baby Eddie and the other is all four generations of Edward Harvey Gagnon's!
Wednesday, April 4, 2012
Getting back into the swing of things...
What a nice normal week we've had. I finally feel like we are slowly getting back to normal and getting to really enjoy our new expanded family. After last weeks crazy amount of appointments this week has been a bit quieter. Monday baby Eddie finally had his circumcision done which in all honesty hurt big Eddie more than it hurt baby Eddie :). I was a bit freaked out too but he did so good the nurse said he didn't even cry!
Yesterday was such an amazing day! We woke up and realized that for the first time since baby Eddie was born we didn't have one appointment and big Eddie didn't have to work either job! So we took a page out of the Steve Gallant playbook. For those of you that don't know us Steve was my uncle who passed a few years ago. He was well know for waking up and deciding to take a random road trip (even sometimes taking a "sick" day) which always ended up in a fun filled day! I know that my brother and I as well as his daughter remember those road trips as some of the most fun times in our lives. At some point in the trip something crazy always happens where we end up giggling at the situation whither it be getting lost, forgetting something crucial to the trip or even blasting the radio and singing as goofy as we can. So we got up yesterday morning as decided on a Steve trip! I was so excited I was like a kid, I kept saying "this is so awesome, I love this..." we headed up the pike and down to RI (I know that sounds like we went up to go down but here in MA you go "up" (east) the pike and then down to RI, it's not quiet as confusing as it sounds) we ended up at Roger Williams Park Zoo in Providence, RI. It was a blast and actually pretty inexpensive. I urge anyone whose in the area to check it out it's only a little over an hour drive from here. Check out their site here http://www.rwpzoo.org/.
Here's a picture of Bella with the giraffes, she spent the whole first part of the zoo saying "I hope there's giraffes I love them so much!!!!!"
After the park we headed to Dave and Busters in the Providence Place Mall. Bella was so excited to eat (or not eat) and go play. I think her exact words were "LOOK AT ALL THOSE GAMES!!" It was a blast!
We then headed home with two very tired very overstimulated children and we all passed out! Baby Eddie even slept until 3am! All in all it was nothing short of an amazing and normal day where we could really take the time to appreciate our adorable and amazing family!
Today we're heading to the baby's urology ultrasound to make sure his bladder function is as good as they think it is and that nothing is backing up into his kidneys. Fingers crossed that all go perfect!
Yesterday was such an amazing day! We woke up and realized that for the first time since baby Eddie was born we didn't have one appointment and big Eddie didn't have to work either job! So we took a page out of the Steve Gallant playbook. For those of you that don't know us Steve was my uncle who passed a few years ago. He was well know for waking up and deciding to take a random road trip (even sometimes taking a "sick" day) which always ended up in a fun filled day! I know that my brother and I as well as his daughter remember those road trips as some of the most fun times in our lives. At some point in the trip something crazy always happens where we end up giggling at the situation whither it be getting lost, forgetting something crucial to the trip or even blasting the radio and singing as goofy as we can. So we got up yesterday morning as decided on a Steve trip! I was so excited I was like a kid, I kept saying "this is so awesome, I love this..." we headed up the pike and down to RI (I know that sounds like we went up to go down but here in MA you go "up" (east) the pike and then down to RI, it's not quiet as confusing as it sounds) we ended up at Roger Williams Park Zoo in Providence, RI. It was a blast and actually pretty inexpensive. I urge anyone whose in the area to check it out it's only a little over an hour drive from here. Check out their site here http://www.rwpzoo.org/.
Here's a picture of Bella with the giraffes, she spent the whole first part of the zoo saying "I hope there's giraffes I love them so much!!!!!"
After the park we headed to Dave and Busters in the Providence Place Mall. Bella was so excited to eat (or not eat) and go play. I think her exact words were "LOOK AT ALL THOSE GAMES!!" It was a blast!
We then headed home with two very tired very overstimulated children and we all passed out! Baby Eddie even slept until 3am! All in all it was nothing short of an amazing and normal day where we could really take the time to appreciate our adorable and amazing family!
Today we're heading to the baby's urology ultrasound to make sure his bladder function is as good as they think it is and that nothing is backing up into his kidneys. Fingers crossed that all go perfect!
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