Tuesday, September 20, 2011

One Year Ago Today.....

One year ago today life was uncertain.
One year ago today we were scared of what was to come.
One year ago today it seemed never ending. 
One year ago today we were given a gift....that gift was hope.
One year ago today we thought our world was ending only to realize new beginnings.
One year later look at how amazingly far we've come.

This was Riley just over a year ago after a heart cath.

One year ago today what I had always prayed for, although most days thought was only a dream, became a reality..... Riley was no longer depended on her central line (large IV in her chest) and it was removed. She had been off TPN (IV nutrition) for around a week at that point. Although scarred to death of what was to come the joy of knowing my baby had done it was unlike anything I can describe. The complications from being TPN dependent for her were to great, it was something that HAD to happen. Being one year TPN free is absolutely amazing!! I want to celebrate it as if it was a birthday.... In a sense it was a new beginning.

Although this came about through unbelievable and unthinkable circumstances that should have never happened in the first place hindsight is 20/20. I can't be angry, or I'd never be able to move forward. I have to be thankful for the gift we were given. These "circumstances" I am speaking of I will talk about more another time. Even after a year it's still very hard to come to terms with and understand it all.

I miss my blogging though.... it has been over a year since I have done it. I want to start again. As always there's lots of things going on with the kids. I want for everyone who loves and cares for our family to know how we are. It is Mitochondrial Disease Awareness Week. This is something I felt I could do to bring more awareness to a disease that most people have never heard of even though it is as common as childhood cancer. To put our story out there helps to educate people. Slowly over time I will fill in the missing peices of the last year for everyone.

Liam is now in kindergarten!!! He is so excited and such a social butterfly, I truly love it. He wants so badly to impress everyone and tries so hard! He has been doing very well health wise. When we moved to SC last Dec. I kept him home with me until it was time for kindergarten. That helped him tremendously with not constantly catching everything and anything the preschoolers were passing around. Adjusting to school has been a little hard on him. He got a cold after the first week of school which lead to an exacerbation of his gastroparesis (the stomach emptying to slowly). The doctors always thought he probably had it to some degree due to his reflux ht. still  being such an issue and based on his testing. It has never been a major issue though. We are thinking it is just a flare-up though and we are waiting for it to pass. He has been very tired and is usually asleep by 5:30 on school nights but I know to some extent that is normal and hoping he will adapt to the new schedule. Over the summer he was diagnosed with ADHD. I don't think anyone who knows Liam was shocked by this though.  He is in OT now and I'm very excited that they are finally working on his sensory issues especially when it comes to eating. That battle is getting old! He is also playing soccer on Saturday mornings! He wasn't able to play the first few weeks because of feeling bad but has been able to participate the last 2wks. He has really been getting the hang of it and loves playing with the other boys his age. 

Riley is well Riley, truly amazing! She never lets anything get her down or keep her from doing things! But considering were she was and is now we feel truly blessed every single day. She still see's a lot of specialists. Her stomach was doing quite well since we did away with formula. She was coasting along with mostly "manageable" issues and we had even been able to only have to use her G-tube a few times until the beginning of July. The heat and not drinking enough made her stomach angry and it decided to go on  vacation for almost 7wks. So, to make a long story short we are having to use her G-tube to ensure she is staying hydrated and is able to eat during these episodes. She has a lot of issues with fatigue when she isn't getting her nutrition so it is something we have to be mindful of. She has had to restart her IVIG (an IV infusion she gets once a month) since her immune system had not started doing what it was supposed to on it's own yet like we'd hoped. Her heart is doing good! We have to have echo's yearly to make sure everything is ok and to watch the stent. She could have issues with the stent in her pulmonary artery as she grows but her new cardiologist is hopeful we will be able to catch anything that comes up early and deal with it. Developmentally she is doing well. She is extremely smart.... sometimes to smart, lol. Her speech is still a work in progress. When she turned  2 in March she was only saying a handful of words. She is making great progress although talking is still a lot of work for her. Her speech therapist sent her for a swallow study since she was still choking when drinking from an open cup and when her stomach is acting up she has periods where she wont swallow.anything. It showed mild dysphagia during the pharyngeal phase of swallowing with all things and there was some penetration when using an open cup. Luckily as long as we just keep using a sippy cup for and make her drinks really cold it isn't a big deal. So anyway, she goes to speech twice a week and during one session she receives OT as well. She also gets PT once a week due to her issues with falling a lot and balance and has developmental therapy with her early interventionist once a week at home. I'm sure there's more but I think that's all the big stuff.. 

Life is crazy and busy but it is our life. We are thankful everyday for what we have. I love my children more than anything in life! 
This is Today 

For Mitochondrial Disease Awareness Week educate yourself on this disease. Mito is called the "invisible disease" for a reason. Don't be ignorant to it and add to the problems these families face everyday.... Go  to MitoAction and educate yourself today!