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Thursday, January 30, 2014

Looking back...

One of my first jobs out of college was working as a customer service representative for a home infusion company. I remember calling the mom's of some of the kids who were getting entral (feeding) therapies, sometimes thinking about what could be wrong with them that they need this. Some of the kids had ports for their therapies, while some just had the g-tubes. The other half of the company did DME supplies. I didn't deal with those but from talking with my co-workers, I also wondered what was wrong with the patients to need the equipment. I would think about how strong those families were to be doing everything they did, how strong the patients were, what kind of support they had...never, never did I think I would become one of those families.

Thinking back now, I had that job for a reason, not just to get my feet wet in the real world, not just to get my feet wet in healthcare (afterall, that is what I went to college for)...I had it for Ian. I had it so I could learn things I never would have learned in any other healthcare job, things I now need to know to advocate for him. This child who was not even here yet...Brian and I got married while I was at that job. Like any couple, we discussed kids...what we did not know then would change our lives forever....we were carries of the VRK1 mutation. Without knowing it, I/we were making decisions that would help us to become the parents we are today...to help Becca and Ian become who they are today and who they will be in the future.

I have always felt that things happen for a reason. Sometimes we may know what that reason is immediately, while others we may not know what the reason is until years later, and other times we may never know the reasons. Just another reason to treasure yesterday, dream of tomorrow but live for today...

Monday, January 27, 2014

It's About Becca 2

I am very proud of Becca and her Girl Scout sisters...they donated more then 80 boxes of Girl Scout cookies to the Community Crisis Center...way to go girls.

Becca also realizes what she needs to do in order to help keep Ian healthy. Last night she started with a cough, which is still working on her. When she got home from school, I did not even need to remind her to stay away from Ian, she told me she was going to stay away. In addition, when I got home from my work meeting tonight she was wearing a mask around the house. I asked Brian if he told her to and he said nope she got one herself and started wearing it...I wish I did not need to be proud of her for needing to know these things but since I do and they are a part of our lives...way to go beautiful....very proud of you. You are becoming a wonderful young lady. We may not know the reasons we go thru the things we do...just take them all as they come and continue to learn from them, let them help you to become who you are. 

Friday, January 24, 2014

Kids Are Amazing – Especially Mine


I used to always say and think, as a kid, my parents don’t really know anything when the truth was that they really do; otherwise how would I have gotten where I am today in my life.  Without their life lessons I know I would not have accomplished most of things I have done thus far.  But certainly not everything I know was taught to me by my parents or in school.  Most of life’s lessons just come from experience and observation.  To this day I am still learning a lot about life and probably will never truly understand what it is all about.  All I know is that I have to take things one day at a time, one step at a time.  No matter what it takes, I’ve got to move on, keep looking forward and don’t look back on things in the past that I can’t change because what’s done is done. 

My plea to everyone….if you don’t already, sit down and talk to your child (ren).  I don’t mean about school or other things.  I mean REALLY sit down and talk to them, about life.  Talk to them about really in depth things.  I’m not saying get in to some really deep topics that as children they certainly would not totally grasp at their ages but delve in to some life topics.  I bet you will be surprised as to how much these little minds truly understand and grasp. 

Take my own children for example.  You all know the complexity of our life situation within our family and the struggles we go through day in and day out.  Some days are better than others and some we hit even deeper than rock bottom.  But those two little kids (semi-adults) of mine are like little sponges.  The things they say amaze me, the way they act astounds me or their little mannerisms I just can’t get over.  These are the things I never would have thought at their age they would understand nor actually talk about. 

Just the other day, again Ian brought up the topic of death.  Marci and I have always been open and honest with the kids, to a certain extent.  Since last January we have been more apt to discussing death with both Becca and Ian and what it means ET all.  So everyone now and again Ian decides he wants to talk about the subject in more depth.  Just out of nowhere he will make some sort of little comment that leads in to a conversation I never thought I would have with a child of his age.  So all four of us sat in Ian’s room, talked about death (i.e., how you go to heaven, there are family members up there waiting for all of us, how Ian will be able to do all the things he has lost the ability to do here, no more trache, no more meds, etc.).  After a few minutes, our precious not so little daughter had to leave the room.  She was getting upset about the topic and didn’t want to discuss it any longer.  Who can blame her?  The discussion ended itself shortly thereafter.  Marci and I then went to comfort Becca as well.

But just today, we get a text from Ian’s nurse while they are at school saying Ian wants to talk to us more about death.  We get a little more concerned when we hear this because we are not really sure what this means, especially when Ian brings the topic up.  He brought that up mainly because of how Becca reacted the other night and wanted to know and understand why she was crying.  I guess maybe it goes back to that “twin” connection but they are and hopefully always will be that way.  Yes they argue and make each other upset but deep down they truly do care and have a true love for one another as brother and sister.  Anyway, it turns out that Ian wants to talk to us more about death because of how Becca reacted not because of what’s going on with him.  As he told his nurse, who relayed to us, he is not ready to die.  That’s a huge relief for us to hear because we all know that when he feels he is ready he will certainly let us know. 

The biggest thing that amazes me about Becca and Ian is how their little minds work.  Not just on regular day to day things but about such deep topics like death.  Yes they have gone through their fair share of life lessons in a very short amount of time but I would never have thought they would approach us to discuss these sorts of things.  I have always felt that I would have to be the one to approach them and ask if they wanted to talk about certain things.  That is one of the biggest things I am so proud of my children for; their perception and observation for life.  It doesn’t matter if you can get up and run around or if you are confined to having to sit there and not be able to move much.  In either case, life goes on all around you and you can’t stop it.  Kids are amazing little creatures in their own right and really are smarter than I know I probably give them credit for.

So again, I ask everyone, at some point in time, before they all grow up and become adults, sit down, talk to them, listen to them and hear what they say.  I bet you too will be amazed and what they know, realize and understand.  Just food for thought.

Wednesday, January 22, 2014

B4sma Productions: Your Eyes

The beauty and wisdom of those with SMA. Ian is in video 7, at 3:11.

http://www.youtube.com/watch?v=jrHeECbE45o&list=PLu36JpnSqETcbn5_wwz0gcvxg2nrWI_mv

Looking at all of the wonderful eyes is breath-taking, not a day goes bye that I don't look into my kids eyes, do you?

Friday, January 17, 2014

Ups and Downs

This week has been one of ups and downs, more ups. Monday started off with a visit to the orthopedic, Brian and I knew this was going to be a hard appointment. Ian's scoliosis has increased from 58 degrees to 64.5 degrees. He is officially a candidate for spinal growth rod surgery. We discussed all our options with the M.D., and decided our plan at this point would be to start wearing a back brace again. We decided we would go with a soft TSLO, Ian has always had a hard one and has been extremely uncomfortable in them. We are hoping he will be more comfortable in the soft one. Brian took Ian to get casted today for the brace.... Ian being cast and the design of choice for his brace.


Tuesday was back to school. Ian did great. Wednesday was school for Ian, I joined him as well since we had a new nurse start. Brian and Becca went to Philadelphia for the 5th grade field trip. They had a great time. Thursday was another M.D. appointment, pulmonary. It was good, Ian is stable on all of his vent settings. We continued our surgery discussion with him, as Ian getting the spinal surgery is a risk for him, much more then the normal person. At this point, Ian has told us he does not want the surgery. We told him we are just gathering all of our fact and he will help us make the decision when we get there. This is a very difficult decision for us, looking at the X-ray on Monday you could see his lung begin smushed. That along with the pictures above just breaks our hearts. It is all part of the horrible disease. Thursday night, Ian decided to have some fun with oxygen, just for a boost. Friday, was school and getting casted for the brace. This afternoon Ian decided that he wanted to have more fun, a plug which did not want to come out so easily. Tonight we are all comfortable with sats in the upper 90's getting ready to watch Cloud 9 as a family. 

The ups and downs of a neuromuscular disease.

Sunday, January 12, 2014

Realization - A Call Out to the Villiage

As I am sure this will not surprise anyone; all of us are in therapy.  Today we had an interesting session with Becca... She has been having a hard time sleeping lately so we have been working on trying to figure out why. We realized that some of her sleep issues are normal while other issues is not and some of them we still don't know. Today, one of my fears came true, she truly gets the outcome of Ian's disease. She mentioned not wanting to think about it, thinking about what? Being any only child. I replied she will NEVER be an only child, Ian will always be her brother. She was asked if she talks to her friends, her response, I don't always want to talk to them about it, I could get upset and cry and I don't want to do that. Besides they know as we are all close enough that they know and understand what I am going thru. While this sounds great, I wonder how true it really is. As adults we have a hard enough time understand what we go thru and why, so do 10 year olds really understand. 

So this I am throwing out to all of her friends parents, to the parents at Chatsworth, to those who have played sports with her, to those how have gone to Hebrew school with her, gone to camp with her, I am sure you get it. Do you think your kids understand what she is going thru to the best of their ability or what she will be going thru when Ian is free to run, walk, scream, play or to just be all boy. Are you willing to talk to them on how to support her even when she may not think she needs it or when she does think she needs it, after all we as adults may not know how to do it. My Becca is going to need her friends...in addition, they may need her (will Ian being free affect your child). She goes thru things 99.9% of kids won't ever go thru and for that I love her more then words. 

She, just like Ian, is my hero. Please help me to continue to help her, reach out to her friends and his friends, talk to them, reach out to me if you want/need to; thank you all for being a part of our village. 

***Ian is doing well, there is nothing with him which brought all this about.

Saturday, January 11, 2014

Friday, December 27 - Meeting Spider-Man and Friends (Again)

This was a big day for us, but only 3 of us knew why. Once everything was arranged and we knew we were going to Orlando, Brian made a call to Universal to see if a visit with Spider-Man could be arranged. Who knew it was as easy as a phone call, explaining our situation and a confirmation number given to him. Well it was...so we got up early and off to Islands of Adventure we went. The first thing we had to do was go to guest services to check in with the confirmation number to get a time to meet Spider-Man as well as get a stroller for all our "extra" stuff. Brian was told that if we could get over to the specific spot in 15 minutes our meeting could take place soon. Well that was all they needed to tell us...we were off. Once greeted by the staff person, we were taken to the same spot we meet Spider-Man and friends back in 2010. The memories started coming back. After about 10 minutes of waiting, some of Spider-Man's friends started to make an appearance, then came Spider-Man. Ian's face was priceless once he realized what was going on...



Spider-Man and friends were great, taking all the pictures we wanted, signing things (we brought the Make A Wish photobook Brian and I designed after our trip and had them all sign that). What helped to make that even more special is that they remembered Ian once they looked at the book...it was great. 





When it was time to say good bye to all our friends, Spider-Man turned to Ian and told him he was part of his team now...priceless.

After doing a few more things around the park, riding some rides....Rock -n- Roll rollercoaster, visiting Harry Potter at Hogmeades and getting some Butter beer it was time to head back to the condo. All were done for the day.

That evening was a time to catch up with some old friends for Brian and I, one of my dear friends and sorroority sisters from college now lives about 50 minutes from Orlando and came to visit with her family. It was great to see them (I went to college with her husband as well). I had only met their oldest daughter when she was a baby...the one things I do regret about that night was not getting a photo of us....Kristine (Freda) and Rob Bennett, so glad we got to see each other after 12 years...lets hope it is not another 12 years before we see each other again. 

Once they left it was time to start packing as our trip was over and Saturday morning we were heading back home...

Thank you Harry and Debbie for giving us a wonderful week of memories. We will forever be grateful.





The Rest Of April - This is a post from April 2013

The end of the month was busy...
Ian just had his appointment with Dr. Sponseller, his leg is completely healed and he is out of his brace. It has made transfering him much easier. He also got xrays of his scoliosis....that has jumped from 45 degrees to 58 degrees in a 6 month period....so we watch it and hope it does not jump any more. Dr. Sponsellor is hoping to hold off on surgery for a few more years. The magic number to NOT get to it 75 degrees.
We celebrated the kids birthday in many ways...first on the 22nd they had a fabulous cake


Thanks to icing smiles and the wonderful volunteer baker Esther. As you can see the kids loved it.


Later that week they also had a small party from their friends at ChaiLine.
Ian also had a visit from his riding instructor ...she brought lots of goodies ...


Isn't the hat great!

He continues to go to school for 1/2 days and loves it. If he would only not be mad at us for not letting him go back full days.

Sleep Study Update / Back to School

Well the results are in....he did great. There were no major issues regarding his sleep study results, no adjustments need to be made to his vent settings nor oxygen needing to be added. The one concern which was brought up to us was the leak Ian has around his trache site. This came at a good time as we were heading to the ENT a few days after getting the results...so the ENT says...a few years ago everyone had leaks and it was just fine. I am not sure what is going on as now leaks are not liked. If we got rid of the leak then Ian would have no voice...well we all know that the voice he does have is soft and low but imagine none at all. Not something I want to imagine. In addition, he is currently in the largest child size trache out there, upping the size of the trache would mean a visit to the OR, not something the ENT wants to do nor something we want to do. So the leak stays. It is not causing any problems regarding his settings or his breathing.  

This coming week is going to be a big week for Ian, with 2 doctors appointment (orthopedic and pulmonary), he goes back to school. Tuesday is the big day. We are looking at him going back half days 3-5 days a week. We will start off slow with the 3 days for the next few weeks and see how he does with the hopes of him doing well and getting him back to 5 days a week for 1/2 days. He is excited as his misses his friends...watch out Chatsworth...he's back.


Tuesday, January 7, 2014

Thursday, December 26

Thursday morning, Brian, Stephanie and Becca went to Animal Kingdom while Ian and I hung out at the condo. The 3 f them had a great time at Animal Kingdom seeing the animals and such. Ian and I had a great time having mommy and son time. The one on one time was great, he was hanging out in bed, told me to turn off the TV and sit on the bottom of his bed. Becca has been working on a latch hook and she said that Ian and I could work on it while they were gone. Ian did great at making sure the right colors were being used in the right places. 

The afternoon was spent just hanging out at the condo before heading down to Epcot. We had taken down a "bubbie cart" to carry all of Ian's medical supplies around with us during the day....well on Thursday, it decided it was done...as you can see, Becca is carrying one of the wheels and the one still on the cart is a little out of sorts...it added much laughter to the day.



We had dinner in China, did a little bit of walking around, ran in the wonderful friends....the Frisch's who also happened to be down that week. It was cool to spend sometime with them there and for the kids to be able to go on a ride together. As many of you know Ian enjoys biting....you have to be careful what you put in his mouth, Brian decided that if he wanted something to bite while we were waiting for dinner to arrive, he could have a straw.



Then it was time for the Illuminations show. It was amazing....incredibly difficult to take pictures. The kids faces were priceless. It was a late night but worth it.



Sunday, January 5, 2014

365 days later

One year, one month, one week, one day, one minute, one second ago. ... Who would have thought we would be where we are today.

When we took Ian into the hospital on January 5, 2013 we did not know the journey we would be in for. It has been an up and down journey for our family and our village, with many people coming into our village who this time last year were not a part of it. We have overcome many things we never thought we would have to...but when you become a parent you never know what you are in for. I have learned many things over this year...I am stronger then I thought I was, but there are times when I don't want to be stronger...yet I go on. When devastating news happens in our lives, it gives us the opportunity to put life into perspective and not sweat about the petty grievances. The challenge is to carry the perspective with us after the storm has passed. This is something I strive to do, I am not always the best at it but will continue to work towards...the ability or awareness to live in the present. 

Remember...treasure yesterday, dream of tomorrow but live for today.


Saturday, January 4, 2014

Wednesday, December 25

Hollywood Studios here we come...our destination for Wednesday, December 25th. It was not as packed as I thought it would be, that was a good thing. We mostly did shows and walking around. Brian and I got to do the Rock and Roll roller coaster while Stephanie hung out with the kids. Brian, Becca and Stephanie went on a ride as well. Seeing the kids faces during the shows as fantastic and priceless. The best was the Lights, Motors, Action! Extreme Stunt Show. Watching the cars and motorcycles as well as the others was incredible.
Check out the car in mid air...



 This is a person on fire, interesting to learn how they safely do it.

The car is jumping threw the fire, pretty cool. 


This is all the cars, motorcycles and people who were in the show. 


Even got a visit for Lighting McQueen for him to be in the show

After the stunt show, we went to see Fantasmic. Pictures were extremely difficult to get of this show, so we just have to hold onto our memories for that one.

One of the other great things we got to do for Ian on this trip was to get him into a tub without the shower chair. The tub in the condo was a huge jacuzzi tub so one of us could get in and have Ian lean on us while someone else got in to bath him. It was wonderful for Ian as he has not bee in a bath like that in a long time. He loved having the jets on and us moving his arms and legs around. Another priceless memory. Check out that smile...one we saw a lot during the week. 


Tuesday, December 24

Tuesday was Magic Kingdom, we did some rides, saw a few characters as we were walking around. Got to have lunch with our friends, Robin, Marshal, Lauren and Danna who also happened to be down there the same week. I don't think we got to do as much as we would have liked but that is just the way it goes. Mid day we decided it was time to head back to the condo for all of us to relax for a little bit before heading back to Magic Kingdom for the Electric parade and the fireworks. Once back, Ian decided he just did not want to get out of bed and go back for the parade or fireworks. I am thinking maybe he knew something as Becca, Stephanie and I went back to meet up with Robin and gang. The parade was amazing, I took many pictures but not many of them came out....thinking with all the lights it was just too much. 





Before the fireworks started then was a light show on the castle. We were not in the best location to see all of it so here is just one picture that Stephanie got. 


Then it was time for the fireworks. We did not get to see them as it was bumper to bumper people, it was a good thing we did not take Ian, we never would have been about to get him around with all the people.


Wednesday, January 1, 2014

And We Are Off...Walt Disney World - Saturday - Sunday, December 21 - 22

5:15am on Saturday morning,  the car all packed, everyone sort of awake and our journey to Walt Disney World began. We stopped for breakfast and as you can see from the 1st photo we needed to find something to do to entertain Ian...so who can hold a spoon on their nose?


We stopped at South of the Border, just because you have to when driving to Florida, as well as Stephanie (our wonderful and loving 3rd pair of hands, had not been there before). After hours in the car, prolonged by numerous accidents in North Carolina & South Carolina, the kids decided to watch all the Back to the Future movies, their reactions were priceless; seeing them watch movies, Brian and I watched as kids was great, a wonderful memory.


Our plan was to drive down to Disney in one day, the fact that it took 14 hours to get from Baltimore to Savannah, Georgia led us to the decision to spend the night in a hotel and finish the drive on Sunday morning. Back in the car I was once again reminded of it is the little things. ..I was sitting in the passengers seat, ear buds in listening to music. ...When was the last time I did this, had a few minutes to do it...as a mother, a parent - time for yourself is priceless, as a parent with a special needs, a neuromuscular disease it is even more priceless. and just as I realized this, Brian turns to me and says, we are going to stop for gas and it's your turn to drive....and just like that my few minutes were over.

We finally made it to our destination, Westgate Resorts, thank you so much Harry and Debbie; this trip would not have been possible without your generosity. Sunday night we headed to Downtown Disney for dinner at Planet Hollywood. When we saw all the shops, Ian turns around to us and says "Mommy you did not tell me all these shops were here...." Silly me what was I thinking. And of course two of Ian's favorite things, Legos and Motorcycles, just happened to have stores there.
It is amazing at all the things they had made out of legos. 

After dinner it was back to the resort, to get ready for the rest of the week....

This was on the screen at Planet Hollywood....so what we want to know is WHO IS JENN?

Becca as a biker chic!


Ian's priceless face when seeing the motorcycle hanging from the ceiling....photo below.