Sunday at 6:00 a.m., Carla woke up with a fever and feeling super poopy. Most recently, after catching a cold at the beginning of September, she has never been able to kick the cough that went along with it. Eventually it keeps leading to her developing another infection, and she has to be prescribed antibiotics. I took her to the doctor yesterday and we did some brain storming. We put her on an antibiotic she has never taken before, did blood work to find out if she has any food allergies that might point to the reoccurring cough, took a sample of her phlegm and did a total workup on her. We found out that her magnesium level is better (it was low last week); she does not have strep; she does not have an infection in her blood; she does have a bacterial infection and she is somewhat dehydrated. I emailed with Children's and they have decided to decrease her immunosuppresent drugs until she feels better. So, we have cut her cellcept dose in half and come down on the cyclosporine 25 mls a day. I am just thrilled that they are "hearing" me and that instead of just continuing to throw antibiotics at this problem they are actually looking for a solution. In all honestly, this problem has been going on since March of 2013, when she caught a bad cold that lead to a never ending cough. It has been one never ending cough after another and Carla has taken more antibiotics than most people take in their whole lives. It really is getting ridiculous. We thought that the vocal cord procedure in October would "fix" the problem, but no such luck. Today Carla's pediatrician called to let me know that her phlegm culture showed a bacterial infection and Children's e-mailed in the hopes that we could get an appointment with the ENT specialist at Children's when we are there in December due to "reoccurring sinusitis". I am glad that they are actually starting to search for the root of the problem, instead of just treating the symptoms. I am hoping that our efforts will get her well, and that she can be a happy healthy little girl. Right now she is a sweet, happy girl, who suffers strongly through one illness after another. She has no reserves for her colds and continues to suffer one infection after another. I am sure that her continuous feeling of shitty is the normal for her, but I am hoping that one day it will not be the norm. She deserves so much more than constant illness.
This year we thought that we would do a random act of kindness, to honor Justin and the generous act of kindness his family extended to ours. So, Carla and I baked cookies, which we delivered to the older folks home here in Cascade. They turned out to be absolutely delicious, and we enjoyed rolling them out, cutting, baking, decorating and delivering them.
We like to treat Carla's Heartiversary like a birthday (or as I like to call it, a re-birthday), mixed in with gratitude. So, she received some gifts, wrote a thank you note to Justin in Heaven, and then released balloons carrying the note. It has been a good day, and so much better than two years ago. We are so happy to be home, enjoying family and what is our new normal. We can't help but to feel extremely blessed.
|Rolling out the dough|
|Pretending she's going to eat them all.|
|Opening a present from us.|
|She was SO HAPPY!!|
|Opening a present from Tom & Mandy|
|Getting ready to release her thank you note to Justin.|
|Watching the balloons take the note away.|
|Making sure Mario doesn't disappear into thin air (her biggest fear = losing the dog).|
It has been a busy week of Halloween adventures! Wednesday I was able to go to the school and help the kids carve pumpkins. We had a blast and it is always such a treat to spend time with this exceptional first grade class.
|The first graders, in all of their after pumpkin carving glory.|
|Carla, posing with her pumpkin :)|
|Carla, helping to clean out the guts.|
|Cleaning out the pumpkin guts.|
|Carla looks a lot like her Grandma :) They are both very sweet too.|
|Mommy's pumpkin (pattern picked by Carla)|
|Daddy's pumpkin (pattern picked by Carla)|
|Cat Girl and Princess Anna (They are so adorable).|
|Playing musical chairs, it was fun to watch the competitive side come out in Carla.|
|All dressed up and ready to parade.|
|All of the elementary kids parading around the gym.|
|Ryder, dressed as a puppy.|
|Princess Anna and her puppy.|
|Ryder and Mario, playing.|
|Decorating and eating cupcakes.|
|Carla, getting her face painted.|
|She sat so patiently while her face was painted.|
|Such a pretty butterfly|
|Decorating and eating a giant marshmallow.|
|Trick or Treating!|
|Ryder, sitting in the town firetruck.|
|Carla and her loot.|
|Our pitiful snowfall.|
I am seriously in a state of disbelief about how fast time is flying and how BIG Carla is getting! Today is the last day of the First Quarter of First grade, and the holidays are right around the corner! This afternoon I get to go to Carla's class and help carve pumpkins :) and tonight we will carve our own pumpkin at home. Friday is Halloween, and Carla is pretty excited about dying her hair and dressing up as Anna from Frozen! The Krafts are going to join us for trick or treating Friday night, so that should be fun too.
Bobby has been busy with school and on Tuesday will already be signing up for his Spring Semester! And, Cody is getting the final details ironed out to attend the Musician's Institute in LA come January! Life is changing like the wind, and with all of these changes also comes the desire to downsize. So, our house is for sale and we are praying that our perfect buyer presents themselves sooner rather than later.
Carla still has a lingering cough (from the last week of August) but we are hoping that it will get better soon. I worry that the vocal cord procedure was not as successful as the last one, but only time will tell. Her voice is still pretty soft and getting rid of the cough is taking FOREVER! Of course, there are lots of colds being passed around at school, so that doesn't help matters.
Last Saturday Carla attended one of her classmates' birthday party! It was a mad scientist party and everyone could make their hair crazy, like a mad scientist. Carla was extremely excited about this, because she didn't have to have her hair done. She's not a fan, in the slightest, of getting her hair combed. So, we try to avoid fixing it during the weekends.
Here are some pictures from the past couple of days!
|Silly Selfie!!! Yes, we are nerds.|
|Dr. Carla, at the birthday party :)|
|Making elephant toothpaste, the kids loved this!|
|Making lava lamps.|
|You can't tell she's enjoying herself, can you?|
|Super thrilled to be holding a dry ice bubble. :)|
|This week is Red Ribbon Week and Tuesday was Put a Cap on Drugs day. I found this hat that was sent to Carla when we were living at the Ronald McDonald House in December of 2011. I think she looks like a little pink Elf on the Shelf :)|
We are back home and everything is good! Carla spent last Monday, the 13th, in the hospital after her vocal cord procedure and we were finally discharged Tuesday around 1:30 p.m. We went back to Bev's house and Carla had another fever :( We gave her some Tylenol and laid low for the evening. Wednesday we also laid low but did take Carla to Applebee's before we returned our rental car and flew home. Thursday we went to the pediatrician and were thankfully prescribed an antibiotic. Fast forward almost a week and Carla is doing a lot better. She hasn't had any fevers since the 14th and her cough is so much better as well. She had lost her appetite for a while (and had actually lost 2 pounds) but now that her cough is a lot better her appetite has come back strong. This past weekend Carla was able to attend Morgan's birthday party in Helena and we spent the night with my bestie (Morgan's Mommy). We had to wake up early and come home Sunday morning, but it was still nice to have some time to visit with friends. Carla is happily back to school this week. She loves school and it warms my heart to see how social and comfortable she is. Here are some pictures from the past week or so.
We are blessed.
|Tuesday morning, getting an echo.|
|Waiting for the orders to be discharged on Tuesday.|
|Lunch at Applebees in Renton|
|At the airport...|
|Sleeping in Thursday morning. Mario was so happy to have his family back!|
|Reading (quietly to herself) Thursday afternoon at the pediatrician's office. What a big girl!|
|Thursday evening, starting to feel better and getting her appetite back.|
|Morgan's Birthday Party!|
|Making funny faces and elk antlers.|
|Carla and Morgie, being cute together :)|