Thursday, July 25, 2013

Ok universe....... I get it..... probably!

So this is redundant but for some reason I'm not getting it and the universe is hell bent on making sure I do.  So I think it's about time that I step up and start listening.  What do I mean by this? Let's see, I've said this before but as a mother you want you kids to expierence everything. Most mothers wait what, like 6-7 months for their children to walk. It's usually not a thought really until about 10 or 11 months old. The transistion from crawling to creeping to crusing to standing to walking seems to fly by. For us other moms who were told at 20 weeks pregnant that our child may not walk I've been waiting 26 months!!! That's over two years! Now I am so appreciate that we know that there will be a day that he will be up and walking and maybe even running around. There are other mommas out there whose little ones aren't going to walk until 3 or 4 years old or some may never walk. Hearing over and over again that he'd totally going to be a walker and having trouble pictuing it is tough. I have all these dreams at night that we're out somewhere like a park and he just takes off. Over and over again I get to these points where I get frustrated. The worst part is he clearly gets frustrated sometimes. I even broke down the other day (a couple of times) just wishing he could do it. Wishing for a sign he was progressing. Sometimes when your engulfed in something every day it's hard to see the little changes. Then he showed me. He was at swim class at standing in the shallow end with the other kids holding on to the side. He was watching all the kids jump around and play in the water and he kept looking through the corner of his eye at me. I just sat quietly. Next thing I knew he just took a couple steps back and let go. He literally stood for about 7 seconds!! I was so excited I screamed! Obviously, this caused him to drop to his knees. Then he showed me, another day we were at my mom's inground pool and he was standing on a stair with his back to the stair and he took like 2 steps and stood there. Then he jumped forward and tried to swim (with a puddle jumper on)! I'm starting to see that in order to get him to do anything I just have to find a secret dare devil game to play with it. My plan this way is to get really creative!

Secondary, even though this have been a tough couple of weeks around here the toughest part for me is being the one who writes the checks and pays the bills. It's one thing to know when your broke, it's another to see the money go. Watch the bank account go down and not know where the next check will come from.  This week we've had many angels and blessings. Quiet little fortunate circumstances have come our way. Everytime I get scared we won't have enough we figure something out. I keep thinking, please don't let my "almost" luck run out! (*Almost luck is what I call the times that things go bad and then something good happens to break you to at least even just giving you enough so you can't be mad and have to be appreciative) So to all of you angel out there that have helped us these past couple of weeks from babysitters to those hiring us for odd jobs and more. You know who you are and I wouldn't know what we would do without you.

So, no more getting down! No more doubting little mans abilities or my own! I watch all of these warrior mommies in our little special needs circle have tough weeks or days and we all doubt our strength and abilities. This is for them.... STOP, remember that tomorrow will be better and there are little reminders everywhere all you have to do is keep your eyes open. You will find them.

So universe I get it... well I'll try harder at least!

Thursday, July 18, 2013

Secure Start

I'll be posting a couple of times a week about a program that I've recently enrolled in and as I know that some of you have no connection to SB or cathing needs I'm hoping you'll read about our experience like you so warmly do with all of our experiences. Our blog is about our journey and cathing a a huge part of our lives. I mean really most of my day revolves around it!

So a little bit back I saw a post about getting to blog about a new program from a cath company. The company was Hollister. You can check out there website here. I signed up thinking it would be perfect. We didn't have much direction with cathing and were desperate for a new system to use. Hollister has this great program called Secure Start and it's a personalize program that they offer for free. All you have to do is sign up! They have nurses on call and send you personalized info for your needs. They even have a national speaker network with things like webinars and events (which we all know I love)! I was very excited to check out everything they had to offer. I signed up and once I did I was able to access all these info brochures and check out all the different types of supplies! They even have a downloadable coloring book for kids to help them understand cathing! Which I'm sure is a great tool when potty training time comes! I'll definitely be taking advantage of this! It also had resources and links available to us! I signed up for the Abilities Expo in Boston in Sept! It's even free!! I can't wait! I didn't even know about it before!

I sent off my script for catheters and spoke with very friendly and helpful representative from Hollister's program. He explained in detail the types of catheters they have and we discussed what might work best for us. I choose to try the Advance plus one since we were looking for something with less waste and more importantly something less intimidating for others to learn. Right now we have a system where you attach a bag to the catheter and have to apply the lube. It comes in a package with a ton of other medical crap like gloves and iodine. None of which we use and it seems to just make things complicated and intimidating for new family and friends that may be interested in cathing. Our hope is the new system will be so easy others may be more inclined to try. The more people we can teach the better for little Eddie. As of now only two other people cath, my mother and my 18 year old cousin. Makes for limited sitters!

I can't wait to check out the new stuff! Best part is for a impatient person like myself they send out 25 samples for me to try and they'll get here in 2-3 days. Even better if we like them the supply company we use will deliver them! Which is great because we love the customer service our supply company provides!

When it rains it pours.... Sort of!

So first off this will be one of two posts today. For the next few weeks I'll be posting our usual updates as well as an opportunity I received about posting about my experience with a new cath company and their services. I'm excited about this since in my experience especially when we first started cathing I was a little lost. These services and hopefully the outreach of the blog will assist others in their experience. 

Now to the big updates!! Since we last spoke we here in the Gagnon household have had quite the array of events and catastrophes! I had a couple of painful weeks of mishaps with my IUD. (That's all I'll say on that since no one wants to hear about my birth control woes).  Just as I was recovering from that came all the excitement! Big Eddie took off for a guys only camping trip with his Brother, Brother in law, Father and Uncle. He got to have quite the relaxing mini vacation. Meanwhile here at home I woke up to a vomit covered one year old in a vomit covered bed. Very exciting! He seemed to feel better as the day went on so I took him to the local little July 4th festival that's right at the park near my house. He seemed tired but not much else. We headed home and just as I walked in the door he so nicely aimed right at me and vomited all over me and himself! YAY more excitement! (How's that getaway Eddie?) He had a low fever also. So I called doctors and after a few annoying phone calls with on call barely doctors (thank you holiday weekend!) One that told me to move the shunt tubing away from his skin. I proceeded to yell "Don't you know what a shunt is?!?!"  I hung up feeling unsatisfied! I decided since a shunt issue or UTI could both be possible we'd bring him into the ER. So my mother and I headed to the ER. Thank goodness for the wonderful staff there for not making me feel crazy! He ended up getting a crazy eczema flare-up while we were there which freaked me out more but the doctors and nurses calmed me by explaining that eczema is autoimmune which is a sign he just had a virus! Urine came back great so virus it was!

I woke up the next morning very dizzy. I chalked it up to dehydration since I had been to the chiropractor a couple of days before for neck pain. That was Sunday, by Monday morning I was so dizzy I couldn't stand it. I called the doctor and went it. They did a bunch of neuro type tests and decided that I maybe needed a MRI, the earliest though would be Tuesday night. I went home and laid down. When I woke up the left side of my face was numb as well as some tingling in my left arm. Eddie forced (I say forced since I really really didn't want to go) me to go to the hospital. Once there they preformed a ton of tests and two CT scans. One without contrast and one with. Doctor came back and said I had a significantly large blood clot in my left jugular right in front of my carotid artery! WHAT! Apparently it's rare to get one especially without trauma or a IV line there.  So four days in the hospital (with a disgusting roommate.... no disgusting doesn't even begin to describe it!) and one mini meltdown later. I was discharged with a script for blood thinners. I'm now on them for at least a year since they have no idea how I got it in the first place! The excitement doesn't end there though! I was discharged on Thursday afternoon and Eddie brought me home, set me up to rest and packed up the kids for a fun night of fireworks at his parents house. A few hours later the phone rings and his mother called to tell me that Eddie crashed on the moped and was at the ER in Connecticut! AHHH, yes that would make 3 ER visits in less than a week! Jesus! I hopped in the car and drove down there to check on him and get the kids. So he ended up having a dislocated shoulder and a fracture in his shoulder where a piece of bone was chipped off and floated around. I couldn't even get mad at him, for the first time he wasn't doing some daredevil trick he was just taking a ride with his dad. Thank god they weren't going fast and he had a helmet on! Unfortunately he's been out of work since from both jobs. Thank god he went back to his full-time job yesterday on light duty!

Finances are beyond tough right now. So although our bank accounts are totally drained, we're alive, relatively healthy and recovering! I say this much more optimistically here then I am really feeling! I've had a few mini meltdowns this week. In all honesty I'm drained. I'm exhausted and defeated. We really try to be positive considering some of the circumstances we've been dealt. I try to see the bright side of things but it's also been very emotionally draining lately and looking at a double digit bank account balance is scary. We've worked so hard to make sure we were in a position where bills could be paid and therapies could be attended and we could get our children maybe not what they always want but what they always need. This week I'm so drained and scared that we won't be able to get them some needs either. I know we will work it out and figure it all out. We always do. Things do work out as long as you work but the unknown is always tough! I really appreciate having this outlet to write down my thoughts and our struggles knowing that there are others out there reading this going through it also or something similar. That connection through blogging is what makes it my little support group! Thanks for being there bloggies!