A lot has been going on lately. First thing was that we took Bella to NYC (a very very late Christmas present). The poor kid has been so patiently waiting for this day for so long. We had already rescheduled it twice. The first time due to lack of sitters and the second due to our wonderful Fourth of July escapades. (In case you forgot the whole blood clot/ dislocated shoulder blade fiasco!) she couldn't wait to go. We took her to see everything she wanted. She loves NYC so much. After lots of sightseeing we took her to see Annie on Broadway. It was so awesome! Bella has been singing songs from that musical since she was 2! She has watched that movie a zillion times. She was first in line and wanted to wear her hair just like Annie's! She was adorable!
We also made our biggest purchase ever that week. Despite being super broke my car was costing me an average of $300.00 in gas a week just to get Bella to school and Eddie to therapy. There was just no way we could swing it anymore. We set out loan shopping and car shopping and some wonderful goodwill from wonderful people allowed us to not only get a loan but an amazing deal on a car. We got the perfect car for us. It's a '09 Subaru Forester and it's in amazing condition with great mileage. I went from filling up once a day to once a week!!!
Speaking of financial woes, I have felt really guilty lately. I'm torn between going back to work so that we can not only get on our feet stably but so we can move towards our dream of homeownership and being here for Eddie and all of his therapies. If I go back we'd be in a better spot financially but Eddie would lose some of the services he gets and I wouldn't be able to learn from the therapists like I do now and continue to be a part of that work. I don't think I'm anything extra ordinary but I hope that the fact I'm here helping push him and working with him at home attending his therapies is a big part of how he's come so far. What if that stops. Who will push him? What if that choice pushes him backwards or holds him back. At the same time how will we keep a roof over these adorable children's heads? Food on the table? Big choices need to be made, and very soon. I've never felt so stressed and sad about anything. I feel like I'm letting someone down no matter what. Either little Eddie by taking away what I feel he desperately needs or big Eddie by putting all the financial pressure on him. I'm hoping I can find the faith I need so that we came make the right decision.
It has arrived! Our trial walker is here and in true Eddie fashion he loves it as long as I'm not the one walking with him. He takes off like crazy with everyone else but if I take it out and try to get him to walk anywhere he stands on it and just whines and says "Mommy no.... no mommy..." over and over. The little man has officially got my number! Despite this I really am trying to get him walking on it. Today I'm planning on reorganizing the house a bit so he may have a little better time getting around. Maybe then he'll use it in the house a bit. We ordered one of his own that should come soon. Hopefully we can use the loaner one until then. Also we've upped his PT and added OT and like last year he's going to be doing the work with the American International College students. For four weeks once a week he gets to work with students in the OT and PT program. Last year it was really beneficial to have them working with him and I can't wait for it this year!
Eddie and his best friend at the zoo!
We had a our first UTI this week also. I know this isn't normal talk but in the SB world it's common conversation. Good thing is it was very mild. Actually as soon I brought him to the doctor we were at the tail end of it. Like usual, I got right to researching it. I went to my go to Hollister People First website and found a webinar on preventing UTI's. It was great, some stuff I already knew but it was nice to have a refresher. Sometimes I cath so often I forget the step by step stuff. It was given by a nurse with LOTS of stuff on her resume! It's funny, at first I used to carry a bottle of hand sanitizer everywhere so if I had to cath outside the house I was sanitary. Somewhere along the line I stopped bringing it for some reason. Also, I noticed that I was cathing very quickly. Possibly causing damage. Which can then bring UTI's. I'm determined to be more sanitary and much more careful.
A bunch more happened this week including a trip to NYC and a new car! I'll blog about that later since I'm totally unorganized and don't have the pics all together! Wanted to get our exciting news about the walker out there first!
Where do I even begin to start? We have had such an amazing and not to mention busy weekend. Friday night we headed out to the New England Spina Bifida Conference in Sturbridge, MA. After a stressful pack up and drive up there (mostly due to my own mommy stress out cranky fit!) we checked in and followed our little hotel map around many twists turns and doors to finally find our room. This was quiet amusing since the hotel seemed to be somewhat of a labyrinth. Literally. Apparently if you take the elevator to get to your room you end up going through many many doors and hallways to find your room. We did later realize that if we took the stairs the room was practically right in front of us. With my wonderful mood and extreme hunger pains along with the kids moods it was around 7pm (usual bedtime) and we were hungry! So we headed out before the 7:30 meet and greet. We planned on a quick trip to grab diapers and something fast food. Little did we know that the town of Sturbridge is also something like a labyrinth. Even though we never left the main street we ended up taking what felt like 35 right turns to make a quick left hand U-turn. Once we were all fed and attitudes came up a bit we made it to the hotel and dropped in on the meet & greet. It was so nice to meet some of the other families that were also there for the conference. Eddie decided to spend the whole time walking alone the brick 4 foot wall and flirting with all the girls. Typical Eddie. Bella went to work playing with other kids and bossing everyone around in her best way.
The first night in the room was to say the least, restless. The baby chatted for a couple of hours saying hello to all of us over and over again. I got hit like a ton of bricks with a head cold and Bella decided to wake up at about 5 and talk at a very loud volume and asked about a million questions and then began with.... "Eddie..... EDDIE..... WAKE UP!!! IT'S MORNING!!!" For the record, the sun was not up and I do not consider that morning! In my head cold exhausted fog I may have uttered a shut up unknowingly. Once we were all up and moving we headed down to conference. We sat down for some food in the conference room and then dropped the kids off to the kids club. Which I'm not embarrassed to say was the best part. I needed a kid break already, it was a long morning! We scooted up with some friends that were already sitting up front and settled in to listen to the keynote speakers. I have to be honest, the last conference we went to had the most boring keynote so we were too excited. Well, weren't we surprised.
The keynote speaker was two hysterical women, sisters actually who both have children disabilities. They've written a book together called, wait for it........... "Shut Up About Your Perfect Kid". I couldn't have written a better title for a book. Actually I'm pretty sure I've said that line in my head at least 3 times a week! Everything they spoke about made me feel like they were narrating my own life. In my own little "special needs bubble" we've chatted about how even though all of our children have different diagnosis's we're on the same journey. I can blog until the cows come home but no one understands what this life is like until you've walked it. These two women not only understand but were able to put into words exactly how it feels. The best part was that they shared the humor and sarcasm I tend to apply to my own little world. I'm sure that even a parent without a child with special needs could find the support and humor in this amazing book. Let's be honest, we've all at times wanted to shut up that perfect mom! We even had a chance to chat afterwards with them and even bought a copy of their book ourselves. They are warm and extremely approachable. They were able to connect with all families there. You could tell by watching the line, they were making each family feel as if they were not alone. Living in this special bubble, nothing feels better. I encourage all of you to either get a copy of their book and/or check out their Shut up about your perfect kid Facebook Page. I can't wait to finish the book (yes, I can't put it down!) and pass it along my special Warrior Momma bubble.
We had the opportunity to learn some great stuff and had lots and lots of giggles together with some good friends Ashley and Mark. Annabella and Eddie had a great time also. The kids club was great! Annabella wouldn't leave Ashley and Mark's son Colton alone. She was by his side all day!! Eddie seemed to have fun also. He also had the chance to try out another little friends walker. Well didn't he surprise us all. I was confident that it would take a lot of work to get him to use it. It took all about two seconds for him to get cruising. What a maniac. He started walking all over the room and within minutes was practically running. He was not happy when we had to take it away. This week is seriously going to go by so slow waiting to get one for us to use! He loved it! Check out the video of him below!
Colton and Bella having fun at lunch!
The next morning after a bit more sleep, we headed out to the Abilities Expo in Boston. We saw a lot of cool stuff and next vendors. There was a lot of stuff that didn't really pertain to us but it was very cool to see the products and advances out there. We did get a chance to speak with a couple of intensive therapy programs. One in Michigan and one in Florida. It seems like a neat idea and may be beneficial for Eddie. I'm interested in learning more and speaking with out local PT about it. If anyone out there has tried one I'd love to hear feedback. We were disappointed that we didn't see any therapy/service animal booths. I was really interested in learning about them and how they could help Eddie. He connects so much with animals especially dogs I was hoping we'd get some good info. Hopefully in the future we'll get more info on them.
This morning I took some time to look for some info on SB and sexual issues. I know it's far away but I was really interested in learning what Eddie's future may look like in that department and we planned on attending a workshop on it at conference but it happened to get cancelled. I checked on the Hollister Secure Start website hoping to find some info there and came across something else they do. A program called Hollister Ambassador. It seems so cool. Anyone with spinal cord injuries can apply to be an Ambassador. Have to chance to speak with others and share their experience. I thought this seems like such a great program. After this week we've seen as parents what a great opportunity it was to have a connection with other people going through what we are. It's nice to know that Eddie will have a chance to connect with others going through what he is. I found it wonderful that a catheter company would take the time out to help their customers connect. It seems that they're not just out to sell a product but to put their customers needs first!
This week should be eventful also. Hopefully get a walker to try soon and we'll be attending another workshop on Wednesday night. By next week I'm sure I'll have lots more to tell you!
Lots has gone on this week! First and foremost we got a stipend towards the New England Spina Bifida Conference in Sturbridge, MA this upcoming weekend. We're so excited! We can take the kids since there's a kids club and we got a room for an extra night so we could attend the Abilities Expo in Boston on Sunday! I'll let you in on a secret I'm really hoping to see Auti Angel from Push Girls while we're there. She'll be doing a wheelchair dance class. I absolutely love that show! I love when we get the chance to do these things since we learn so much and get to meet so many others in our little community. We also got the save the date for the National Spina Bifida Conference. It's in Anaheim CA at Disneyland and we really think it would be an amazing experience and chance to learn. We set up a gofundme account with hopes to raise enough money to attend. It's not until July 2014 but its never to early to get the ball rolling. The link to the gofundme site is http://www.gofundme.com/49lo70?forcedesktop=1 if you'd like to check it out.
We decided on getting Eddie a reverse walker and the vendor will come September 30 to show him what he can offer and Eddie will get to trial out two. We also went to Boston Children's to meet with ortho, they would like to get him back into AFO's (ankle foot orthotics) Not 100% of the time but just to see if we can stretch out his hamstrings and back of his knees. We also spoke with our service coordinator for EI and decided to add on OT (occupational therapy) along with our PT and maybe some more PT once he has the walker and AFO's to get him moving. We're going to address some of his sensory issues with the OT and hopefully get him more confident.
No Eddie is not letting go yet but boy am I having to! The past couple weeks I've really had to let go! Of both my kiddos! Annabella started Kindergarten this week, I can't believe my baby is a kindergartener! The house has been very quiet this week and I'm not sure how much I like it. it has been nice to get some one on one time with Eddie. I've really had the chance to focus on him and what his needs are. It reminds me of the days I was home with Annabella when she was a baby. We had so much fun just the two of us. I've also had to let go of Eddie a bit too. I've been reprimanded by our EI therapist about not giving Eddie a chance to be independent. It's so hard not to everything for his adorable face! I'm trying though and I've totally seen a difference. He's really been trying to do some things alone and exploring his little world a lot more. It's neat to watch.
This week we also discussed with our PT about getting him a Posterior Gait Trainer (Walker) so that he can start getting around while being upright. I was a little against it at first because I was worried that it would be used as a "crutch" and he wouldn't be motivated enough to walk independently. I spoke with some moms on my support group on facebook and got quite a different reaction. Lots of parents said that once their child got one they got much more confident and eventually just let go and started walking. Well that sold me! Confidence! He needs that! So we agreed it would be a good idea and having a posterior one would help him stand up straight instead of leaning forward which he seems inclined to do, always! Our PT is setting up something with the vendor to come to center and let Eddie try a few and see which one fits him best. I was sure he wouldn't even want to try them but my minds been changing. Yesterday at group the PT gave him a big chair that's shaped like a box to push on the floor while standing. I thought for sure it would move and he'd do what he always does, kneel instead of take a step. Well in true Eddie fashion he shut me up real fast! He was cruising around everywhere! I couldn't believe it! Then we got home and gave him his push toy (which he never wants that way he always wants to ride it) I put it on the grass outside so it wouldn't go too fast and he loved it! I'm beginning to think this kid is going to show me!
Eddie pushing the chair at group!
Pushing the push toy at home!
This week I also took the opportunity to check out some more stuff on the Holister Secure Start site. I found a bunch of online courses. I loved it. There's nothing I love more than classes, no seriously. I will take a class or workshop whenever I can especially when it comes to SB stuff. I watched a good one about the basics and actually learned a lot. If there's one thing I'm not as confident about is my knowledge on this whole bladder/bowel stuff. It was awesome to learn some more. Every time I meet a parent of a child with SB or speak to someone new to the whole process, the biggest advice I can give is learn! LEARN LEARN LEARN! The more we know as parents the better we can advocate for our kids. Doctors are smart but sometimes we know what's best for our child.
I have waited 18 long months for this day! My little man got up yesterday on those parallel bars that have sat in our house for months and finally took steps without my help! He just stood up and said "walk?" and took steps! All the way across. Then over and over again. Well, with the help of Bella coaxing him with an icee. Immediately starting filming with my phone and crying! I couldn't watch him do it enough. I didn't even want to put him to bed I just wanted him to walk all night! When Bella took her first steps we were excited (trust me very excited, she waited 16 long months!) but I still took it for granted a bit. Watching him yesterday (and this morning, actually as I type he's behind me walking) I don't think I could appreciate anything more. I'm not sure if there are words to describe the feeling that you have when two years ago a doctor told us our child could be severely mentally handicapped and wheelchair bound with no feeling in his legs. How even though we fight for him and hopefully make him believe he can do everything we're still silently holding our breath waiting for those milestones so we can breath again. I have dreams over and over again that he just stands up in the living room and takes independent steps. I have no doubt that the day will come, but a piece of me is still holding my breath a bit. So after 18 longs months I'm BRAGGING!! GO WARRIOR EDDIE!!
What a great week it's been! First I received my first shipment of new catheters. The minute we opened them I thought to myself, "Hi new catheters, where are you been all my life?" They looked so easy and so much less waste. I couldn't stand getting all of this "extra" and having to throw it all away. The old catheters came with gloves and bags and sterilization tools and more. It all got thrown away. Not to mention the countless amount of times I've slipped with the catheter while draining it into the diaper and gotten pee everywhere. All of this makes for a very overwhelming experience for someone that's not doing it everyday. Which makes getting sitter complicated. It's not that there's a lack of help but I know how difficult as an idea and that makes asking people to try it tough.
The old catheters
The new catheters
So about the new caths! First I went on the Hollister's Secure Start website and signed up and then used all the awesome resources to figure out what one would work for us. Made a quick phone call and they swiftly sent us a box to try. We opened it up and it was so much less! All in one catheter and bag and lubricant. Just one thing! After a couple of days I called our supply company and asked to switch our caths to the new ones. They were hard for them to get but within less than two weeks they were at our doorstep. I'm excited to teach someone and see if they have a less overwhelming experience than before.
We also headed to Boston again this week to follow up with Urology about the Urodynamics test we had last month. The trip was dramatic to say the least. My grandmother was nice enough to get up bright and early and make the trip up with me since this time I had Annabella along also. Usually she's in school but since it's summer she came along. BIG MISTAKE! She was exhausted and miserable! She complained and whined from beginning to end! Despite this drama news was awesome! Dr. Estrada told us that his reflux went from a grade 3 to gone! YAY! Also, we discussed that Eddie's sensation seems much more enhanced. Every time we cath he gets very annoyed and can definitely feel it. He said that we'll redo the urodynamics again in 6 months and add the neuro part to see if things have changed. He said he's hopeful that he has more nerve function than before. He also said if so and things look good again we may stop cathing! TRIPLE YAY!!
This past weekend we headed out to Cape Cod for the Falmouth Road Race. My brother signed up a little while back to run with the Spina Bifida team from Spina Bifida Association of Greater New England. We had so much fun all weekend! We stayed at family friends home in the Cape and shared tons of laughs! It was just what we needed! On Sunday Eddie and I woke up to a chatty little Eddie and threw him on the bed with us. Well apparently he decided to surprise us by trying to stand up unassisted on the bed! Over and over! I was so excited! After lots of praise, we got ready and headed out to Falmouth. WOW, what a lot of people for such a tiny town. It was packed! I think there was something like 13,000 runners. It was so exciting watching so many people doing something I could never do! We had our eyes on the lookout for the blue Spina Bifida t-shirts, every time we saw one we cheered louder. Then here came my brother! Looking great! I was so proud! He even stopped for a second to kiss the baby on the head. So cute!
My brother's girlfriend made this! It sums up the day perfectly!
It's been a wonderful week and I'm hoping it keeps up! I can't believe that my baby boy is 18 months today! Gosh really a toddler now! Only a couple more weeks of summer and my baby girl is going to Kindergarten! What is happening!
