Luca thinks it is hilarious when I say "ohhhhh bugger" - but not when Ian says it. Maybe she thinks the way he says it is wrong (even though in reality, he says it with his English accent.)
When Luca walks with purpose, she swings her right arm wildly. It is both amusing and adorable.
I think we have a shoes gal on our hands. Recently she has been walking over to her shoes, picking a pair up, and trying to put them on. We put them on her and she looks down at her feet, gives a mini giggle, then takes off stomping through the house.
I am amazed at how quickly she is progressing developmentally all of the sudden. Her comprehension and ability to follow simple directions is expanding incredibly. I have faith and hope that her words are coming soon, because God knows she is desperately trying to communicate verbally to us.
Friday, February 17, 2012
Thursday, February 16, 2012
Once again, I have gone astray from this little blog. I wish I had some great excuse...but life gets busy around here and time just kind of slips by. I mean to blog and have so many things I want to put down here. But the days go by and I have to choose those free moments of quiet carefully.
I feel like Luca's assistant many days - managing her doctor appointments, phone calls to insurance companies, filing all of her paper work, doing her therapy exercises, chauffeuring her to and from her appointments.
And it seems like her little immune system is very sensitive. While none of these issues have warranted hospital admissions (thank God), I sincerely hope and pray that we can have some better stability soon. Since November, it has been one pesky little thing after another. Colds, 3 ear infections, multiple teeth coming in, constipation issues, and currently, a pretty bad infection around her g-tube. Last week for example, between hospital visits and pediatrician visits, we spent three days visiting doctors. That excludes days of therapy at home. And on the days we were not at the doctor's office, I spoke with her pediatrician every single day.
I want my little happy girl to be just that. And while we get a good day or two here and there, inevitably one of the above sparks up and causes her discomfort. And as a mama, it is incredibly hard to watch your sweet babe in pain or discomfort. On days where she is happy, she is independent and wants to play and run around all day. On the happy days, I am able to accomplish some things like laundry and phone calls. On days where one of the above is bothering her, she is whiny and clingy and it leaves me another day of getting nothing done, and I lay my head down at night exhausted, both mentally and physically.
I am hoping with the spring weather around the corner, that it will bring with it some stability. I want my happy girl back! If nothing else, it will allow us to get out in the sunshine and provide some new distractions and adventures.
I feel like Luca's assistant many days - managing her doctor appointments, phone calls to insurance companies, filing all of her paper work, doing her therapy exercises, chauffeuring her to and from her appointments.
And it seems like her little immune system is very sensitive. While none of these issues have warranted hospital admissions (thank God), I sincerely hope and pray that we can have some better stability soon. Since November, it has been one pesky little thing after another. Colds, 3 ear infections, multiple teeth coming in, constipation issues, and currently, a pretty bad infection around her g-tube. Last week for example, between hospital visits and pediatrician visits, we spent three days visiting doctors. That excludes days of therapy at home. And on the days we were not at the doctor's office, I spoke with her pediatrician every single day.
I want my little happy girl to be just that. And while we get a good day or two here and there, inevitably one of the above sparks up and causes her discomfort. And as a mama, it is incredibly hard to watch your sweet babe in pain or discomfort. On days where she is happy, she is independent and wants to play and run around all day. On the happy days, I am able to accomplish some things like laundry and phone calls. On days where one of the above is bothering her, she is whiny and clingy and it leaves me another day of getting nothing done, and I lay my head down at night exhausted, both mentally and physically.
I am hoping with the spring weather around the corner, that it will bring with it some stability. I want my happy girl back! If nothing else, it will allow us to get out in the sunshine and provide some new distractions and adventures.
Thursday, February 2, 2012
Another...
Thought I would share another article I found that hit home. It resonated with me as I read it. (And it is on a Catholic site, but has nothing to do with religion).
http://www.ncregister.com/blog/to-the-mother-with-only-one-child
http://www.ncregister.com/blog/to-the-mother-with-only-one-child
Wednesday, February 1, 2012
Wednesday, bullet style
I go from a week like last week where I post several times, to this week, where I have not had any time to post anything. Such is life.
Here's what we have been up to, in bullet style.
Here's what we have been up to, in bullet style.
- Friday L woke up with a fever (first time in months), and like always, it scared me. After a long trip to and from the doctor, we learned she has another ear infection. This is the third time, all in the left ear. Poor thing.
- Sunday, I cut Luca's first piece of hair. She had this one weird piece that was longer than all the rest and always fell on her face. It made her look like a hot mess. So I chopped it and put it in a little baggie to keep. (I am not sure why it is such a big deal to keep - but everyone tells me I should so I did. Now what do I do with it??)
- Monday we headed to Georgetown for a liver clinic appointment. Looks like I had been underestimating how much food she is taking by mouth because little girl has gained almost 1.5 pounds in 4 weeks. Also, at this appointment, they REMOVED HER PICC LINE! I am sorry to put it all in caps, but it truly is something I want to scream at the top of my lungs in excitement. We had not given Luca a bath since before transplant (that is over 13 months ago now!). To say I was excited to be rid of that is an understatement. Obviously, I am grateful that we had it when it was truly necessary. But, I gave her a bath this morning and it was glorious.
- Yesterday she had a swallow study done (you can read what it was like in these two articles: http://www.new-vis.com/fym/papers/p-feed9.htm and http://www.chp.edu/CHP/Modified+Barium+Swallow ). While she was not thrilled with the test, it was quick. There were a few tears on her part but I am happy to report that all turned out fine and the results were exactly what we wanted to hear - that everything is perfectly normal and healthy.
- We have been spending lots of time outdoors both yesterday and today because it has been unusually warm.
I hope you all are having a wonderful week. And here is a picture (blurry, yet I love her expression for some reason) from yesterday:
Friday, January 27, 2012
Hospitalizations in 2011: the Numbers
16 separate admissions.
132 days.
116 nights.
November was the only month we did not spend a single night in the hospital (only because she was sick and we had to cancel the scheduled admission).
These numbers exclude checkups and days where we just went in for labs. These numbers are true admissions, where we spent those days and nights in a room.
They say that the first year after transplant is hard. They were not kidding. It was brutal. Honestly, based on how I feel about 2011, and the many, many memories we have of being in the hospital, I was surprised the numbers were that low. Most of those days were between January and June. Then, from June through December, the admissions were about once per month, with the stays ranging from 1-3 nights.
You might be thinking how crazy I must be to actually have added up those numbers. But I do well knowing the numbers so that I can remind myself just how far we have come. I never want to take for granted the progress we have made. And even though those days in the hospital were hard, and terrible, and painful, and truly exhausting, both mentally and physically, they led us to where we are now. At home, with our beautiful, feisty, challenging, loving little girl.
So to all those families going through that first year of hell, or to those who are waiting for their child's perfect liver, I wanted to tell you that we have been there. It is daunting to see those numbers. Not every transplant patient's journey will be like ours. But I am here to say that those horrific days in the hospital are worth it! Every single one of them.
132 days.
116 nights.
November was the only month we did not spend a single night in the hospital (only because she was sick and we had to cancel the scheduled admission).
These numbers exclude checkups and days where we just went in for labs. These numbers are true admissions, where we spent those days and nights in a room.
They say that the first year after transplant is hard. They were not kidding. It was brutal. Honestly, based on how I feel about 2011, and the many, many memories we have of being in the hospital, I was surprised the numbers were that low. Most of those days were between January and June. Then, from June through December, the admissions were about once per month, with the stays ranging from 1-3 nights.
You might be thinking how crazy I must be to actually have added up those numbers. But I do well knowing the numbers so that I can remind myself just how far we have come. I never want to take for granted the progress we have made. And even though those days in the hospital were hard, and terrible, and painful, and truly exhausting, both mentally and physically, they led us to where we are now. At home, with our beautiful, feisty, challenging, loving little girl.
So to all those families going through that first year of hell, or to those who are waiting for their child's perfect liver, I wanted to tell you that we have been there. It is daunting to see those numbers. Not every transplant patient's journey will be like ours. But I am here to say that those horrific days in the hospital are worth it! Every single one of them.
Thursday, January 26, 2012
Fudge fail
I made my mom's recipe for fudge recently to take to the hospital for Luca's team. We randomly surprise them with something little - normally horribly bad-for-you food - just as a little thank you. I realized partly into cooking the fudge that I had added the chocolate too soon into the base. I knew right away that this likely would mess up the recipe. But poured it into containers anyways and hoped for the best. I set it outside to set and before leaving for the hospital the next morning I saw this:
Clearly, the animal did not like the fudge.
P.S. - I did not take that batch to the hospital. The sugar did not dissolve properly because of me messing up the order. I made a new batch, that was made correctly, and not disturbed by anything outside. And it tasted delicious.
And this - notice the mark on the wood.
Clearly, the animal did not like the fudge.
P.S. - I did not take that batch to the hospital. The sugar did not dissolve properly because of me messing up the order. I made a new batch, that was made correctly, and not disturbed by anything outside. And it tasted delicious.
Wednesday, January 25, 2012
The weather recently
It has been a very mild winter here just outside of D.C. We have had some very cold weather, but it has yet to produce any measurable amount of snow. Saturday, we woke up to enough snow that it covered the ground (but not enough that the grass blades were completely covered). It was pretty and peaceful and quiet. I bundled Luca up and met Ian outside as he came home from a run. She was not too thrilled with wearing a hat, but she loved looking around at all the white.
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