I am slowly working my way into the positive.  I have been getting calls from people asking me if I am ok b/c the blog is a bit depressing.  I guess people are not used to me sounding down.  So I am going to try to be more upbeat and positive.   Samuel's passing hit me pretty hard as well as many others in the mito community.  I cannot even begin to imagine the family's sadness.    

But today was nice b/c it has been a crazy couple of days.  Both Rick and I have not been feeling well and our schedules have been so busy.  He went to Avery's GI appt. with me today b/c it's difficult going by myself to a late appt. with a respiratory kid being stuck in Boston traffic.  So I am grateful that he was able to take the time out of work. Those are the times that we can take a minute and check in with each other.  Although the poor guy had a rough day at work and had to go to the appt. in his shirt and tie.  He had a change of clothes but the dress shoes and cachi shorts were not working together so he opted for the profesional look.  LOL.

Anyway, we talked about Samuel as he is being laid to rest today.  It just stirs up alot of emotions in both of us.  Here we have Avery who has had soo many issues and we wonder when? and how?... So here we are running late for the appt. and Rick is stressed and I am stressed about his driving and then...You look back at Avery who is pulling one of his Frankenstein type of faces (from the spasms) and we just start laughing.  I know it sounds mean but sometimes you just have to laugh. Because when Avery sees you laughing then he will laugh.  And for anybody who knows Avery and has seen the face that I am talking about then you know you are laughing right now too...

Anyway, I have to say that this was one of the first appts. in a long time that I went in for a specific purpose and got what I wanted. Shocking, actually...  My intention was to get the GI drs. to drop Avery's TPN from 7 days down to 5 days.  Mission accomplished!!! They also dropped his time from 16 hrs a day to 12 hrs.  Woot Woot.  This is awesome in so many ways.  Number one, everyone agrees that Avery is a big fat chunka munk.  While it is cute to see his fat cheeks, triple chin, and cellulite belly, it is NOT good for his health nor mine  He cannot use his diaphragm effectively to breathe with all that chub.  Plus with his already weak muscles it is just a bad combo.  I was glad that they were in total agreement.  The drs. were very happy with how Avery was doing.  It is always an accomplishment for them to be able to reduce TPN.  While it is great for weight gain it can be hard on the liver.  Luckily for Avery, his liver looks great.  He has been on TPN for almost 2 yrs as his primary nutrition and just 2 line infections in 3 yrs of having his central access.  So while he looks like a train wreck in their charts, he is actually doing well in other ways.  
The other positive is that the steroids did the trick.  He sounds sooo much better.  He sounded horrible last wk and this week you would never know anything was wrong respiratory wise.  The great thing about Avery is he responds really well to treatments.  The only thing we will change is the form next time.  For the dose he needed to get it was too much for his gut (volume wise) so he will get it IV next time.  I am hoping it is enough to keep him home over the winter.  He also got his flu shot so homeboy is all set. 

As you can see I am trying to get Avery squared away for before my surgery which is in two weeks.  I know I cannot predict when he gets sick but I can certainly try.  I would just like to be able to recover at home for a bit.  If I am not then I fear I will be in constantly with the same issue.  So while there has been alot of sadness lately, I am grateful that I have my boys here and they are thriving. I am going to try to focus on the positive things because their certainly are many blessing in our lives. If you can continue to pray for the Knight family as they lay their beautiful boy to rest. Thank you