Wednesday, December 28, 2011

8 years


My dearest Abigail,

8 years old. You turn around twice and 8 years pass by. I can remember being pregnant with you like it was yesterday. I remember the first time our eyes met and the first time I held you. It all seems like it just happened.

You have grown so much this year in so many ways. I love hearing you describe different things that you have read or learned and almost be able to see the wheels in your brain turning. You are so smart. It amazes me to see how your mind works and how you are constantly thinking about how the world works. I love watching you grow in knowledge.

You still have such a sweet heart. You hate to see others in stress, and you always try to cheer people up when they are down. Your love and care for Nathan is unlike anything I have seen. You have a special bond with him and take it upon yourself to make sure that he has everything he needs. You are such a good big sister to Emma and Nate.

Your are an amazing girl, Abby. You have a wonderful heart and are a really special kiddo. I love you, my sweet Abigail Nicole. Happy 8th Birthday.

Saturday, December 24, 2011

Christmas trip phonetopraphy, round 1












  

Thursday, December 15, 2011

My little dancer



Wednesday, December 14, 2011

The craziness of wintertime


So, Abby has pnuemonia. So much for whatever I had being seemingly non-contagious. It seems that a potent, nasty virus has invaded this house, and we really, really hope it left after Abby. Whatever this is seems to camp out as a high fever and invade the lungs. Out of everything we have had the past few years, I am the most concerned about Nate getting this bug. We are supposed to leave for our long northern bound Christmas trip this Saturday, and I am really nervous about what may lie ahead for us. I really hate feeling like the other shoe is about to drop.
Abby is now on a good antibiotic and hopefully will break this stubborn fever soon. We are also doing regular chest percussions on the poor kiddo because her xray also showed atelectasis. Hopefully she will be back to good in no time. Although watching TV a lot more than usual is a blast, she is sad that she has missed out on this final last week of school before the Christmas break.
In an ironic twist, Nate had a regular follow-up appt with his pulmonologist today. We absolutely LOVE his pulmonologist, and although the little guy was a bit cranky from a lack of a nap during the visit, it was a good appt. It was also really great to finally meet the new chair of the department and talk extensively about all the weird ins and outs of mito with him. Like all the rest of our docs, he was great! I am always impressed with our doctors' inquisitive natures and zeal to learn about mito disorders, especially the ones here new to Nate (there literally aren't many we haven't seen at some point before), and therefore fairly newish to mito disorders...especially the disorders with Nathan's presentation. We left once again thankful for the amazing doctors employed by our children's hospital.We have such a great team here.
I also picked up some labs when I was there that the little guy had done last week. His lactate was normal once again, but his pyruvate continues to be quite high. I don't think Nate has had a normal pyruvate in all his life. His liver labs were elevated...in addition to him having some random issues with hypoglycemia lately, I am not surprised that his liver may be struggling a bit more lately. In conclusion, his IgG is once again low, and he seems to have lost most of his response to his pneumococcal vaccine once again.. Even though we know the little guy is struggling in different ways, it always seems to be more apparent when we get his labs back. But even amidst it all, the Nafey boy continues to do well. He's hanging in there...eating more than he has in quite a while and still quite energetic. These are times where I am glad that we look at the patient and not the lab work in regards of treatment. I really hope and pray that he can get through the wintertime without problems with illness that can quickly set him back.

Sunday, December 11, 2011

Tebowing


Nate made it on the website tebowing.com: http://tebowing.com/post/14019734545/tebowing-for-a-cure-with-his-stuffed-puppy

Its pretty neat to see him on that site, and I do have to admit that he is purdy darn adorable with his little Tebow puppy.

Friday, December 9, 2011

Who turned the calendar to December?


Its kinda funny when you are in the smack dab middle of the intense craziness of the holidays and your body decides to throw a monkey wrench in every single one of your plans in the shape of something called pneumonia. Seriously. How in the world does a healthy 30 year old contract pneumonia completely out of the blue?
It was a tough 5 days of a fever that was beyond intense at times and a cough that continues to tone these "post-3 babies" flabby abs, but I can now say that I have survived the worst illness of my entire life. Literally. And I learned a lot during those few days...like it is imperative that you keep an empty bladder when you are coughing up a lung, and that having all of Nate's medical equipment around can be helpful to others than just him, and that I married the absolute most amazing man in the whole world who held down the fort and did anything in his power to keep me comfortable. Well, and if you have to cancel plan after plan after plan for a few days, it will all still be okay.
The great thing is that this pneumonia does not appear to be viral whatsoever, so that means that the kids are safe. I do admit that I was pretty darn worried Nate would get this before we knew what it was. I knew it would more than likely be disastrous if that happened, so I was relieved to find out that he should be safe from it. Now, to find out how I all of a sudden succumbed to the lung infection. Obviously, we don't do medical stuff by the book in this hood.

We have one more week until our annual trip to Kentucky (and Ohio this year), so we are in the countdown of preparing for that long trip. The kids are beyond excited about getting up north and seeing all of their extended family and hopefully snow!
We had the entire month of November off for doctor appts for the little guy, which has been such a welcomed relief lately. It was so nice to have such a long break. We've had 3 appts scheduled here right before the holidays, and we have 2 appts the week we get back home right before we head to Houston. Last week, Nate saw our surgeon and his team for an adjustment to his stimulator. It was the first time we have seen them since his last surgery, and it was so good to see everyone again. Nate had a lot of fun wearing his Halloween costume to the appt. The adjustment to his stimulator has helped him eat a bit more along with getting his tube feeds, so we hope this will help bump his weight up again.

All in all, Nate is doing extremely well. He is doing better right now than he has in a very long time, and it is so wonderful to see him like this. He just feels great. His energy levels are good more often than not now, and he just seems so happy right now. I pray it lasts for a really long time and that he isn't hit hard this winter with illness. The next few months always have us on edge when it comes to him getting sick.
The last week of school offers a lot of fun activities for the girls, and they can't wait for all the fun festivities to get here. It will all be over before we know it. I still can't believe it is already December and Christmas is around the corner!

Monday, December 5, 2011

Party like its 2011


We had a slumber party last Friday night for Abby's 8th birthday. Due to the facts that her birthday is 3 days after Christmas and that I'm just not a party planner, the poor kid has never had a friend party for her birthday. We had a blast trying to plan the activities for her slumber party, but I became a little panicked about what I had undertook the closer the day of the party came. What in the world was I thinking having 10 second graders (and Emma) over for a slumber party?

But it really was a blast! The girls all had so much fun spending that time together, and they were all so very well behaved and sweet to each other. I have quite a few pictures from the wild and crazy night that I need to edit, but here is a little sneak peek of the fun times they had:

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