The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Saturday, December 28, 2013
Xmas in MA
The latest Pinterest project all over the web are these Grinch Kabobs. I made them for Seamus' daycare party and they came out pretty good.
We spent Christmas at home. It was a quiet and lovely day. The kids were super excited that Santa came.
Seamus was a riot opening gifts. He would give a very loud, "OOOoooooooo.....WOW!" as he opened gifts. He even helped Eve open hers.
It was a joyful and lovely day. We are blessed.
We spent Christmas at home. It was a quiet and lovely day. The kids were super excited that Santa came.
Seamus was a riot opening gifts. He would give a very loud, "OOOoooooooo.....WOW!" as he opened gifts. He even helped Eve open hers.
It was a joyful and lovely day. We are blessed.
Xmas in NJ
A few weeks ago, we went to NJ for an early Christmas. Jim had the weekend off and made a super quick trip to my parents. My brother and his family were able to come up from VA so it was a whirlwind of fun.
We were able to see my best friend and her family. Here's Jack:
Here's Maddie:
After lunch, Dave, Trina, and the kids came.
We were able to see my best friend and her family. Here's Jack:
Here's Maddie:
After lunch, Dave, Trina, and the kids came.
Giovanni (5) and Alex (10) |
Bella (3) |
Tuesday, December 10, 2013
mic-key valve
Last week, the valve on the j port blew. If one of the valves has to blow, the j is the best. When not it use, it can be plugged and still allow access to the g port. In other words, the leaking can be stopped. I just have to be careful when removing the feeding tube so that her skin stays dry. If the g valve blows, I'll be on the horn with the GI and asking him to look into the AMT g jet.
I will say that her skin integrity is much improved since we've gotten the low profile button. I still keep strips of silver alginate dressing at the stoma to keep it clean and dry, but it's no longer bleeding or raised.
I will say that her skin integrity is much improved since we've gotten the low profile button. I still keep strips of silver alginate dressing at the stoma to keep it clean and dry, but it's no longer bleeding or raised.
Saturday, December 7, 2013
Holiday festivities
This weekend is a busy one. Today, the kids and I went to a gingerbread decorating event at the local preschool. Jim was working, but I had lots of help thanks to Colleen, Duffy, Thomas, Judge, and Jen. The kids had an absolute blast! Sometimes I am overwhelmed by the love and support from our community.
In the afternoon, we went downtown for the reindog parade. It's such a fun event. Seamus wore his beard hat!! He was so distracted by the activity that he kept it on. He got lots of laughs as we walked in the parade.
Josie, on the other hand, did not keep her saddle on. It kept flopping over so we just ended up taking it off. Her antlers were a beard at one point, too.
While we were waiting to start the parade, we saw Santa!!! He came over to say hello. The kids were thrilled. He was very sweet. His oldest "elf" is in a wheelchair.
It was a super fun day. Tomorrow we get our Christmas tree. This is going to be a very fun Christmas season. I think Seamus' excitement will be very contagious.
In the afternoon, we went downtown for the reindog parade. It's such a fun event. Seamus wore his beard hat!! He was so distracted by the activity that he kept it on. He got lots of laughs as we walked in the parade.
Josie, on the other hand, did not keep her saddle on. It kept flopping over so we just ended up taking it off. Her antlers were a beard at one point, too.
While we were waiting to start the parade, we saw Santa!!! He came over to say hello. The kids were thrilled. He was very sweet. His oldest "elf" is in a wheelchair.
It was a super fun day. Tomorrow we get our Christmas tree. This is going to be a very fun Christmas season. I think Seamus' excitement will be very contagious.
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