Tomorrow Audra will be admitted to CHOP. Wednesday is her scheduled endoscopy/colonoscopy in the OR under anesthesia. She is being admitted the day before for the bowel prep and IV hydration. I am not sure what I am hoping for with this procedure...I suppose any news will be good news...as it will hopefully point us in the right direction of diagnosing and treating her malnutrition and bouts "tummy troubles" (to spare you the details). I have been wanting the GI doctor to do another scope for many months now. Audra's first scope, which was done during her admission in May, showed some abnormalities...inflammation (gastritis/colitis) and villi blunting (similar to but not exactly the same as seen in Celiac disease). But it was difficult for GI (and the pathologists) to determine what the problem/diagnosis was. Now that her GI doctor is telling us that tube feedings are a real possibility for Audra, I was pretty insistent that they do another scope before heading down that road.
Turns out Audra has impeccable timing...
She has been struggling with ear infections since mid January. Friday I took her back to the pediatrician for her follow up appointment. And the infection still hasn't cleared up. Now, she is on her third round of antibiotics (in addition to the daily antibiotic she takes for her kidneys). So, 4 antibiotics in 1 months....praying that she doesn't get the C-diff infection again! Not to mention that antibiotics are rough on her sensitive tummy...causing her not to eat as well, and spend too much time in the bathroom...which inevitably leads to weight loss. Friday she was down one pound from two weeks prior. Not what my little peanut needs! So...I called her ENT doctor as soon as we got home from the pediatrician...he will see her first thing Tuesday morning before she is admitted and he may join her in the OR on Wednesday to get a better look at what's going on and do whatever he needs to.
Kind of like a 2 for 1 deal.
Have to keep a positive spin on it :)
Monday, February 24, 2014
Friday, February 21, 2014
a whole new world!
Audra got her much anticipated glasses today :)
When I first put them on her she just stood there...looking all around...taking everything in.
Oh, how I wonder what was going through her sweet little mind.
She is farsighted, which means she can see things that are far away, but everything up close is blurry for her.
Now, with her glasses on, I am so excited for her...
...to see the food on her plate
...to see what she is coloring on paper
...to see the pages of books I read to her
But most of all, I am so happy that she can now see clearly the faces of all those who love her so dearly.
I was worried about how we would fit both her hearing aids and the glasses on her petite little ears...but she is managing just fine. In fact, she did NOT want to take her glasses off tonight. I had to encourage her, promising her that she would get to wear them again tomorrow. And everyday after that!
As of today...Audra can hear AND see better!
It must be a whole new world for her!
Friday, February 14, 2014
A day of Many Celebrations
Today was a day with many reasons to celebrate! AND my brother and his family were here from North Carolina to join in on all the celebrating.
Audra's 1st Valentine's Day:
Happy Valentine's Day to my little sweetheart! Last year on Valentine's day we were excited about our recent I-800 approval, knowing that we were just a few short steps away from finally going to get our girl. This year, as we hold her in our arms, it is STILL amazing to think about all that it took for us to get to her, and all that has happened since she joined our family. She is a sweet, sweet girl with a smile so bright and a laugh so contagious...she lights up our world!
Lantern Festival:
Lantern Festival is celebrated on the fifteenth day of the first lunar month. The 15th day is the first full moon of that lunar year. According to East Asian tradition at the beginning of a new year, when there is a bright full moon in the sky, there should be thousands of colorful lanterns hung. Lantern Festival is the official end of the Chinese New Year celebrations.
To celebrate Lantern Festival, families often dress in white, and lanterns are hung in honor of the moon to shine the way to a happy future. Children go out at night carrying paper lanterns and solve riddles on lanterns. The lanterns can symbolize the people letting go of their past selves and getting new ones. The lanterns are almost always red to symbolize good fortune.
The delicacy of choice for the Lantern Festival is Chinese rice balls, little white moon-like treats. It is believed that the round shape of the rice balls symbolize family togetherness, and that eating them will bring the family happiness and good luck in the new year. I was planning to make these treats today, but got a little side tracked with the day's events. Read a bit further and you'll see why!
January birthdays:
With my brother and his family here to visit this week, we celebrated Maura and Aunt C's January birthdays a bit late. Maura was a little confused at first...was she turning 7 already?! But she was happy to receive presents from grandma and grandpa, Uncle Steve and Aunt Brownie.
AND...
Steve's remission:
13 months ago my brother received the devastating news that he had lymphoma. He endured chemo and radiation that finally finished in July. Two weeks ago he received the amazing news that he is in remission....something to be celebrated!!!
Tatum's arrival:
Our entire family gathered at our house tonight to celebrate these many events. But we were also anticipating another very special event...the arrival of our newest family member, Tatum. My sister went into the hospital early this morning to be induced (she is more than a few days overdue!) Everyone wrote their predictions for Tatum's arrival on a poster:
Some people were generous...predicting a petite 6 pound baby with only 5 hours of labor.
Other were not so generous...predicting an 11 pounder with 15 hours of labor. Ugh!!
Time passed slowly for those of us waiting for news....
We enjoyed a dinner of tater tot casserole in honor of her arrival (she already has the nickname "tater tot")...
Audra's 1st Valentine's Day:
Happy Valentine's Day to my little sweetheart! Last year on Valentine's day we were excited about our recent I-800 approval, knowing that we were just a few short steps away from finally going to get our girl. This year, as we hold her in our arms, it is STILL amazing to think about all that it took for us to get to her, and all that has happened since she joined our family. She is a sweet, sweet girl with a smile so bright and a laugh so contagious...she lights up our world!
The cousins all made Valentine crafts together...
Lantern Festival is celebrated on the fifteenth day of the first lunar month. The 15th day is the first full moon of that lunar year. According to East Asian tradition at the beginning of a new year, when there is a bright full moon in the sky, there should be thousands of colorful lanterns hung. Lantern Festival is the official end of the Chinese New Year celebrations.
To celebrate Lantern Festival, families often dress in white, and lanterns are hung in honor of the moon to shine the way to a happy future. Children go out at night carrying paper lanterns and solve riddles on lanterns. The lanterns can symbolize the people letting go of their past selves and getting new ones. The lanterns are almost always red to symbolize good fortune.
The delicacy of choice for the Lantern Festival is Chinese rice balls, little white moon-like treats. It is believed that the round shape of the rice balls symbolize family togetherness, and that eating them will bring the family happiness and good luck in the new year. I was planning to make these treats today, but got a little side tracked with the day's events. Read a bit further and you'll see why!
We did manage to squeeze in time to decorate lanterns:
January birthdays:
With my brother and his family here to visit this week, we celebrated Maura and Aunt C's January birthdays a bit late. Maura was a little confused at first...was she turning 7 already?! But she was happy to receive presents from grandma and grandpa, Uncle Steve and Aunt Brownie.
AND...
Steve's remission:
13 months ago my brother received the devastating news that he had lymphoma. He endured chemo and radiation that finally finished in July. Two weeks ago he received the amazing news that he is in remission....something to be celebrated!!!
Uncle Steve, Maura and Aunt C
Tatum's arrival:
Our entire family gathered at our house tonight to celebrate these many events. But we were also anticipating another very special event...the arrival of our newest family member, Tatum. My sister went into the hospital early this morning to be induced (she is more than a few days overdue!) Everyone wrote their predictions for Tatum's arrival on a poster:
Some people were generous...predicting a petite 6 pound baby with only 5 hours of labor.
Other were not so generous...predicting an 11 pounder with 15 hours of labor. Ugh!!
We enjoyed a dinner of tater tot casserole in honor of her arrival (she already has the nickname "tater tot")...
Finally...we all got a text at the same time...
Tatum Aline
arrived at 7:07pm
6lbs 7oz
18 inches
and
BEAUTIFUL!
What a wonderful day, full of family and celebration, for many reasons...
that ended with the sweetest celebration of all!
Welcome Tatum!
Thursday, February 13, 2014
"snow-way"
One of the things Audra says most frequently is "no way".
And, because she is NOT a fan of snow...
when she wakes up in the morning and sees a fresh coat of snow (which has been happening 2-3 times a week around here), she says something that sounds like "snow way"!
In other words, she wants no part of the snow.
Today was another morning of "snow way". In fact...about 15 inches of "snow way". And overnight tonight another 3-6 inches is expected.
SNOW WAY!!!
Sure....
And, because she is NOT a fan of snow...
when she wakes up in the morning and sees a fresh coat of snow (which has been happening 2-3 times a week around here), she says something that sounds like "snow way"!
In other words, she wants no part of the snow.
Today was another morning of "snow way". In fact...about 15 inches of "snow way". And overnight tonight another 3-6 inches is expected.
SNOW WAY!!!
Sure....
it's beautiful...
and fun for the kids...
maybe even a little fun for Audra...
maybe even a little fun for Audra...
But enough is enough already!
SNOW WAY!!!
Sunday, February 9, 2014
Diagnostic dilemma
A week ago, on Saturday morning I received a phone call from one of the doctors of the International Adoption Clinic at CHOP. Audra had been there for an appointment on the 23rd and the doctor wanted to follow up regarding a few concerns.
The first concern, of course, is her growth...or lack there of. She is growing (she has gained about 3 pounds since coming home), but they would have expected to see her grow much more in the 9 months that she has been home. "Catch-up" growth as it is called. We know that she was malnourished when we brought her home, her bloodwork showed this for the first few months of her being home. But now, her bloodwork is improving, we know she takes in more than enough calories, and yet, no catch-up growth. She continues to have bouts of diarrhea which is more than likely part of the problem. But despite the very extensive testing that has been done so far...the cause remains elusive. The plan is another endoscopy/colonoscopy on February 26th. We are hoping that it leads to some answers. Because the possibility of tube feedings has already been mentioned.
Another concern is her developmental delay. Delays are expected in children who spend their early years in an orphanage. But usually, once home, children catch up nicely. The team is concerned that Audra is not having any catch-up gains. In fact, they think she has had "little absolute gain since her last evaluation" in July. Of course, my mama heart tried to justify it...
*she's been hospitalized 4 times
*she's been sick frequently
*she's had doctor visits and tests/procedures constantly
*and we have learned that she has significant hearing loss
Surely these things must be contributing factors!
Despite all of this, the doctor feels that further diagnostic evaluation is warranted due to her medical complexity. Audra has been referred to see Genetics, Metabolism and a Developmental Pediatrician.
More trips to CHOP. More doctor "friends". More testing.
Just want Audra doesn't want!
I am praying that one of these doctors can solve the puzzle of Audra.
And that all this medical "stuff" we are putting Audra through will be of benefit to her.
The first concern, of course, is her growth...or lack there of. She is growing (she has gained about 3 pounds since coming home), but they would have expected to see her grow much more in the 9 months that she has been home. "Catch-up" growth as it is called. We know that she was malnourished when we brought her home, her bloodwork showed this for the first few months of her being home. But now, her bloodwork is improving, we know she takes in more than enough calories, and yet, no catch-up growth. She continues to have bouts of diarrhea which is more than likely part of the problem. But despite the very extensive testing that has been done so far...the cause remains elusive. The plan is another endoscopy/colonoscopy on February 26th. We are hoping that it leads to some answers. Because the possibility of tube feedings has already been mentioned.
Another concern is her developmental delay. Delays are expected in children who spend their early years in an orphanage. But usually, once home, children catch up nicely. The team is concerned that Audra is not having any catch-up gains. In fact, they think she has had "little absolute gain since her last evaluation" in July. Of course, my mama heart tried to justify it...
*she's been hospitalized 4 times
*she's been sick frequently
*she's had doctor visits and tests/procedures constantly
*and we have learned that she has significant hearing loss
Surely these things must be contributing factors!
Despite all of this, the doctor feels that further diagnostic evaluation is warranted due to her medical complexity. Audra has been referred to see Genetics, Metabolism and a Developmental Pediatrician.
More trips to CHOP. More doctor "friends". More testing.
Just want Audra doesn't want!
I am praying that one of these doctors can solve the puzzle of Audra.
And that all this medical "stuff" we are putting Audra through will be of benefit to her.
Saturday, February 8, 2014
10 months
Today is 10 months of having Audra with us...
1-0!
double digits!
In two short months it will be one full year since the first day we laid eyes and arms on her.
Where has the time gone? It's gone by so crazy fast!
Someone stop the clock...slow this world down!
I want to savor every second of the blessing that she is.
CNY at preschool (updated with pics!)
Finally, after many delays to due school being closed for the recent snow and ice storms...
Audra celebrated Chinese New Year with her friends and teachers at preschool on Friday. Her teacher put a lot of effort into planning the day and it turned out great!
The activities included:
~reading a story about the traditions of Chinese New Year
~sweeping and cleaning the classroom (to get rid of bad luck)
~making a traditional Chinese hat
~writing Chinese characters
~counting out pennies to put in red envelopes
~making paper lanterns and parading around the building
~eating Chinese food at snack time
I love this preschool and I LOVE her teacher, Miss Anne. What a honor it was for them to go out of their way to plan a special day to celebrate Audra's culture.
I am working on some pictures of the day...so stay tuned and check back!
2/10/14...Update with pictures:
Audra celebrated Chinese New Year with her friends and teachers at preschool on Friday. Her teacher put a lot of effort into planning the day and it turned out great!
The activities included:
~reading a story about the traditions of Chinese New Year
~sweeping and cleaning the classroom (to get rid of bad luck)
~making a traditional Chinese hat
~writing Chinese characters
~counting out pennies to put in red envelopes
~making paper lanterns and parading around the building
~eating Chinese food at snack time
I love this preschool and I LOVE her teacher, Miss Anne. What a honor it was for them to go out of their way to plan a special day to celebrate Audra's culture.
I am working on some pictures of the day...so stay tuned and check back!
2/10/14...Update with pictures:
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