Tuesday, June 30, 2009

Back in the swing...

I sat down with a bowl of soup for lunch yesterday to scarf down before Nate's OT appt, and my soup-loving gal (Emma) came bee-bopping over to take part in the soupy goodness...just like usual. She scooted her little toosh beside mine and stole my spoon, so I got up to retrieve another "poon" as my little non-"s" saying gal pronounces it. Emma took her first bite of the soup just as I was about to dig in, and she immediately spit the enitre mouthful right back into the bowl.

Me: (rather frantically because spit and backwash give me the willies) WHAT IN THE WORLD ARE YOU DOING?
Emma: Dat bite had a damatoe (tomato) in it.This was about the time that I realized: "Yep, I'm definitely home." And the soup...well, that went right down the garbage disposal. Wasteful? Yeppers...but it had Emma spit in it and I love the kiddo and all, but there was no way that soup was going to make it down my throat without a good amount of gagging along the way. However, the leftover meatloaf in the fridge was great...and was NOT shared with anyone.

(Emma's belly with a mitoaction.org temp-tattoo...she's very non-conventional with where she decides to place her tats.)

The trip to DC was wonderful. Even though I missed the fam like crazy, it was quite nice to be away and experience quite a bit of continuous thought without being interrupted with spilled drinks or requests for snacks and games of "Don't break the ice". The UMDF symposium was...well, I can't quite explain how wonderful it was being able to attend this meeting except to say that I am so very very thankful to have be able to take this opportunity to be surrounded by so much knowledge about this disease we are facing each day. I was able to put a face and personality with the main doctors across the country (and they are very few in number) that research and treat patients with mito. I was able to sit in on a talk about the genetics of this disease and finally understand the many ways this can be passed down in families. (Mito is the only disease they know of that can be passed down multiple ways and have such varying degrees of involvement within families.) Meeting with the doc who runs the mito clinic in Houston was simply wonderful, and it opened up the next tier to Nathan's care and a few questions on some treatment options we have in the near future.Right before I left for DC, Nathan had been having some breathing issues that caused his Pulmonologist to order some labwork on the little dude. When the labs came back, it showed a pretty low CO2 level that signaled that Nate was in metabolic acidosis...most likely lactic acidosis, as this is fairly common in mito patients and the little guy has had problems with this in the past. At the symposium, I was given answers to why this happens and what we should do about it and if this causes long term problems. The great news (and I am excited because none of Nate's docs really knew the answers to these issues) is that we can usually combat lactic acidosis at home with pumping Nate full of gatorade and won't have to admit him unless he won't take the fluids at home. And the high levels should not cause problems as long as he is self-compensating (hyperventilating (breathing fast) in order to bring his CO2 level down quite a bit to help stabilize the ph in his blood), and we currently know that he is doing just that. See...I told ya I learned a LOT!But the best thing I brought back from DC was the budding friendships of many other families going through this journey right along with us. I really enjoyed talking with parents from Canada, Michigan, Atlanta, Texas and so forth. I also enjoyed meeting a great couple from Ocala and a mom from Orlando (both here in FL), and we have high hopes and plans for some awareness and fundraising in our state that doesn't know much at all about this disease. I also spent a good amount of the weekend with our mito researcher's nurse, as we have become pretty good friends lately. She was such a huge help along the way, and we truly enjoyed getting to know each other and each other's families (from stories) better. I can not express accurately how thankful I was for the weekend in DC and for the information and friendships gathered from this trip.On the home front, the kids loved hanging out with Grammie and Papa (Jay's parents). Nathan (the man of very few words) started calling Grammie "Gah-Gah" and didn't stop the whole weekend. If he wanted something, he yelled for "Gah-Gah" until she came to his beckon and gave him what he was desiring. If she didn't come right away, he just got louder and louder. I find that quite humorous and am now not too upset that he isn't saying "Mama" or "Dada" yet. The girls were heartbroken when they had to say good-byes to the grandparents...in the words of the tenderhearted one (Abby): "Mama, I just put my head down and cried and cried." Growing up, we always lived away from our grandparents, so I know the feeling all to well. It stinks having to say goodbye and knowing you won't be able to see them for a good while longer.
We are finally back to a normal routine around here. Nate had OT yesterday, and they are ordering him a new disk type thingy for him to sit on from time to time to help strengthen some of his respiratory and trunk muscles that we have been working on for eons with little results. We're being creative now, and this disk sounds pretty interesting. I love Nate's OT...God has really blessed us with wonderful therapists for him.So that's the recap. I am still horribly behind on emails and such, but I have really been enjoying playing with the kids with a refreshed zeal from being away for a few days. In the 4 days I was gone, I think they all grew a foot taller and became a teeny bit more ornery. It's great to be back home.


wandaconner on June 30, 2009 at 2:44 PM said...

Good pictures! We enjoyed Grammie & Papa's visit to Florida too!
Wanda & Jimmy

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