This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Monday, October 21, 2013

Happy Fall Ya'll

     Once again, it seems like it's been forever since I updated.  I keep thinking that after this event or the next that things will calm down this year but so far we've completed nearly 75% of this year and it hasnt happened yet! Needless to say, its but an extremely busy year!!  So much going on in the Paxton household.  We had an incredible summer.  Lots of fun and resting. Both of the big kids got to go enjoy several different things with their cousins. Lydon was able to go swim a couple of different times with the younger cousins too. He enjoyed a fun filled beach day at Moody Gardens with his "girlfriend".
     August rolled around and we got the big kids off to yet another school year.  Aidan is in second grade.  He has an "more seasoned" teacher this year who isnt as appreciative of Aidans full spirited personality but I am so proud of how well he has adjusted.  He is learning how to adapt to different personality types... A lifelong lesson that could benefit some adults I know. ;)  Hollie is a junior!  Oh my sweet girl...she has a load to carry this year.  She is working on the dual credit/dual degree program and it is TOUGH!!  So tough in fact that we can't seem to find time to pull her away long enough to get her drive time hours completed! Somehow, someway, she figures out how to get it all done and passes with flying colors.  She says she is going AWAY to college  (Sniff sniff! Guess shes had enough of these little boys at home.) and plans to become a NICU nurse. We will all miss her deeply but are so proud of her.  I guess this will take precedent for now but somehow we gotta get this girl driving ASAP!!
     In September, Lydon started a part-time Pre-K program.  We are so happy for this program and the people in charge who were willing to take a chance and let our beautiful boy particpate and be a part of something that he needed so desperately.  This program is two days a week for three hours in the afternoon.  Lydon has done amazingly well. He really likes his teacher.  He has made new friendships, learned to share and take turns, and raise his hand and ask a ton of questions!  He is doing almost as well physically as he has mentally and emotionally. Hes had some cold symptoms but only missed one day because of being too tired.   He is able to make it through the biggest part of his class without using his oxygen.  He usually gets tired about half-way through and/or about the time they start singing and dancing.  He crashes pretty early on school days and is pretty low key with energy and eating the next day as well.  We are not sure where this leaves us as far  as a Kindergarten schedule next year but we will just take it one day at a time.

     After months of fighting through all the red tape, we were finally able to get all of the supplements/medications that his mito doc had prescribed approved by our insurance. We were very optimistic about the potential increased energy and positive side effects from the new combination of meds.  BUT..., let us not forget this is Lydon Paxton we are talking about and our mystery boy is never dull and boring! After everything we went through to get this for him, we started it and sure enough it did seem like it was helping.  He was running around, eating and playing and seemed great until he fell asleep that night.  We gave it about a week but it become more than obviously clear that the new combination was acting like a diuretic and were it not for the Pedialyte he receives overnight for fluid balance, the medication would have been dehydrating him. So, we had to stop that but we were able to separate them out and keep the most beneficial ones on board without any negative side effects.  Wish he would've informed me that he preferred it that way before I fought tooth and nail with our insurance.  Guess he wants to keep me on my toes and keep my brain sharp!  I wouldnt have it any other way my sweet boy....You are worth it all!

P.S.  Through an awesome organization called I Run 4,,  Lydon has been matched with a runner who now dedicates all of her runs to him. We are so excited about this. Its exciting to know that Lydon is the inspiration for somebody to run hard and stay strong and raise awareness about Mitochondrial disease. So cool to see my baby's name on running shoes, especially when he isn't having the best day. He has the heart of a champion for sure and now he is inspiring somebody else's heart and "sole". ;)

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