The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Monday, January 10, 2011
Sunday, January 9, 2011
Merry Merry
I know it's been forever since I updated this blog. Better late than never. We had a lovely Christmas. Jim, Eve, and I went to NJ to see the family. While we were there we experienced the crazy snowstorm that crippled Monmouth County. Actually, Eve and I experienced it. Jim made it back to MA before the storm hit (he had to work that Monday). Fortunately, we got to see most everyone briefly before the storm. Unfortunately, we didn't get to see most everyone after that. It was unreal how affected the area was. Eve and I ended up staying an extra day to be sure we had safe travels.
Santa was very good to Eve this year. We are very lucky. Life is now getting back to normal. Eve is back in school and having fun. Last night we went out to eat and she was an angel. We can now add Vietnamese food to the list of food Eve likes. She's such a good little eater!
Eve and Josie:

Eve and PaPa:

PaPa, Grammie, Eve, and Uncle Scott:

My niece, Bella:

My nephew, Giovanni:

My nephew, Alex:

Alex and Pop:

In going through the pictures I realized that there are some prime players missing. Next year I will try harder to make sure I get shots of everyone. I promise my brother and SIL were there, too. Also, my mom, Jim and I were present. I hope your Christmas was healthy and happy.
Santa was very good to Eve this year. We are very lucky. Life is now getting back to normal. Eve is back in school and having fun. Last night we went out to eat and she was an angel. We can now add Vietnamese food to the list of food Eve likes. She's such a good little eater!
Eve and Josie:
Eve and PaPa:
PaPa, Grammie, Eve, and Uncle Scott:
My niece, Bella:
My nephew, Giovanni:
My nephew, Alex:
Alex and Pop:
In going through the pictures I realized that there are some prime players missing. Next year I will try harder to make sure I get shots of everyone. I promise my brother and SIL were there, too. Also, my mom, Jim and I were present. I hope your Christmas was healthy and happy.
Wednesday, December 15, 2010
blech
Eve came down with a stomach bug last night. She was up twice and emptied her stomach. Poor kid. At least it was quick. She stayed home from school today and we focused on fluids and cup of soup and jello. She's doing much better and will go to school tomorrow.
Of course I am worried we will see regressions, but only time will tell.
Of course I am worried we will see regressions, but only time will tell.
Tuesday, November 30, 2010
happy Thanksgiving!
Oma and Pop came to our house for Thanksgiving. It was a lovely visit. My first time hosting for turkey day. Eve had a blast. Here she is with Oma:

Oma and Pop gave Eve an early Christmas present. It's a winter cape and it's fabulous!!!!!! Winter coats are such a difficult endeavor for many reasons. First, they are hard to fit her. Her arms are so tight, you need to get a coat that is easy to put on. Second, the wheelchair makes it difficult. Once you get her strapped in, she really needs to get into the cold air or she'll overheat sitting in the house waiting for the bus with her coat on. So, this cape is perfect! I put on a fleece jacket (that she can wear in the house without getting too warm), and when the bus comes, I just drape the cape over her and tuck it around her back. It's fleece lined, super warm, and covers her legs. It's also waterproof which is great for snow and rain.

There are even two slits for her to stick her hands through. Isn't this cool?? Thanks Oma and Pop!!

You know, it's the little things that make life so difficult when dealing with a special needs child. The big things are hard, too, but the things we take for granted can be so annoying - like having warm outerwear that actually works for your child.
Oma and Pop gave Eve an early Christmas present. It's a winter cape and it's fabulous!!!!!! Winter coats are such a difficult endeavor for many reasons. First, they are hard to fit her. Her arms are so tight, you need to get a coat that is easy to put on. Second, the wheelchair makes it difficult. Once you get her strapped in, she really needs to get into the cold air or she'll overheat sitting in the house waiting for the bus with her coat on. So, this cape is perfect! I put on a fleece jacket (that she can wear in the house without getting too warm), and when the bus comes, I just drape the cape over her and tuck it around her back. It's fleece lined, super warm, and covers her legs. It's also waterproof which is great for snow and rain.
There are even two slits for her to stick her hands through. Isn't this cool?? Thanks Oma and Pop!!
You know, it's the little things that make life so difficult when dealing with a special needs child. The big things are hard, too, but the things we take for granted can be so annoying - like having warm outerwear that actually works for your child.
Tuesday, November 16, 2010
Fall 2010
I've been so busy lately, that I haven't been able to give the blog the attention it needs.
Let me tell you about Halloween. We were invited to go trick or treating with my colleagues' families. A group picture was taken, but I haven't seen a copy. I was super nervous about how Eve would do. Would she freak out? Would she hate it? How hard would it be on us lifting her in and out of her stroller. I was so worried I made myself feel a little sick. For no reason. She loved it. It took her about 4 houses to get the idea. At the first house, she cried when we left. It was like, "Why are we leaving?? They have candy here!!!" But after a while she was squealing with delight as we approached each house. It was hard work for Jim, lifting her in and out of the stroller. But she had a wonderful time.
All else is well. Eve has a stuffy nose that she can't seem to shake and has been waking up crying a lot more in the middle of the night. Motrin does the trick. I've begun to wonder if she is suffering from the same horrible leg cramps I got as a child. I'll have to ask my parents how old I was when I started getting them. I used to get them mostly at night. But other than that things are fine. I have her parent-teacher conference tomorrow.
Thursday, October 28, 2010
Silly Oma!
My parents came for a visit this past weekend. It was wonderful. They left on Monday after Eve went to school.
Anyhow, Monday morning I was getting Eve dressed for school and apparently I put her Converse sneakers on the wrong feet. When she got to school her aid noticed and asked her who dressed her.
"Did mommy dress you this morning?" "No."
"Did mommy put your sneakers on?" "No."
"Did daddy dress you?" "No."
"Did daddy put your sneakers on?" "No."
"Did Oma dress you?" "Yes."
"Did Oma put your sneakers on?" "Yes." Then she laughed.
Little stinker!!!
Anyhow, Monday morning I was getting Eve dressed for school and apparently I put her Converse sneakers on the wrong feet. When she got to school her aid noticed and asked her who dressed her.
"Did mommy dress you this morning?" "No."
"Did mommy put your sneakers on?" "No."
"Did daddy dress you?" "No."
"Did daddy put your sneakers on?" "No."
"Did Oma dress you?" "Yes."
"Did Oma put your sneakers on?" "Yes." Then she laughed.
Little stinker!!!
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