|
||||||
| Blog Home | Lana's Journal | Dave's Random Musings | Archived Guest Book |
We want to wish my dad, Texas Granddad, a very happy birthday. My dad is an artist and in the spirit of the coming holidays, here is a picture he drew of Santa Claus. Happy Birthday Dad!
Today is Carmen’s 28 month birthday so happy birthday to Carmen too!
Update on Carmen: We are taking Carmen to have her PEG feeding tube replaced on Thursday. Please pray that she is in no pain. The current tube is growing mold in it. Well, maybe it’s mold or maybe it’s C-diff. Carmen is still battling C-diff. She is 5 days into her 10 day course of Vancomycin (the second course of Vancomycin) and no results yet. Please pray that C-diff GOES AWAY!!!!
Free for anyone who can use them: We have a brand new, never worn pair of Answer 2 shoes designed to be worn with orthotics and AFOs. They are size toddler 6W (wide).
We tried ankle braces for Carmen but finally decided that daily stretches work better for her. We never could get a good fit for the braces and driving 45 minutes to the orthopedist over and over just wasn’t working for us. The shoes are meant to be worn over the braces.
I would love for someone to actually use them! They are really cute! If anyone would like them, please contact me at lana@beautifulcanvas.org.
Description of shoe: This shoe has symmetrical straight last, added depth (8mm or 5/16″) deeper than conventional straight last shoes. It has better accommodation for orthotics, AFO and internal modifications. There’s long medial counter to provide support and stability. This shoe comes with 3 removable inserts for flexible fitting. It has extra length straps.
Here’s a picture:
New kind of normal. Our normal. Not normal. These are all phrases you hear when you spend time with families with terminally ill children.
Our lives are not “normal.” Letting go of that normal has been very, very hard. I often wish that life was easier. I wish that my two little girls were running around, laughing and playing together. I wish that Lauren and Carmen would grow up together.
For some reason, God chose us for a not-so-normal life. We took the first step by adopting internationally but we had no idea that road would lead us to a terminally ill child. Letting go of my own desire for a normal life has been a painful process and one I continue to struggle with.
I keep going back to Hebrews 11, the faith chapter. Normal is not spending a year in an Ark. Talk about life on hold! Normal is not waiting until you are 90 and 100 years old for a child. Most of us don’t like waiting one day for what we want. Normal is not hiding your child for 3 months from a king intent on killing all baby boys. Normal is not giving that baby boy to the very people enslaving and mistreating your people. I doubt Moses’ mom envisioned this life for her son.
I can’t think of anyone in the Bible who lived a normal life. And yet their lives are awe-inspiring. So perhaps normal is over-rated. I do know that this past year with Carmen has changed us forever. I don’t think we will ever be normal again and I am not sure we would want to be. I hope and pray that for the rest of our lives, we let go of normal. And that we are willing to take the big “risks” that are both painful and rewarding.
Me and Carmen, an amazing little girl who is teaching me so much without ever uttering a word.
Carmen update: Carmen’s pediatrician called and Carmen still has C-diff. We are starting another round of Vancomycin. Her doctor recommended starting VSL#3, a probiotic with 450 billion live bacteria per packet. Carmen has also developed a yeast infection on her leg. The area stays clean and dry so I have no idea how this happened. We are putting Nystatin on the area and will continue loading her up with probiotics. Hopefully something will help. Please pray for Carmen.
I took Lauren in for her pediatric opthamologist follow-up. She is seeing 20/30 and 20/50 with her glasses. We will go back for another visit in two months. If her vision with glasses hasn’t improved, she will have to wear an eye patch for a few hours per day. She does not like that idea at all so we are praying that her vision improves! If she does have to wear an eye patch, I hope it is pink and sparkly!
While at Lauren’s follow-up visit, I asked the doctor if he could take a look in Carmen’s eyes. He was happy to check her. He turned off the lights and looked in her eyes with a very bright light. Carmen’s eyelids did not even flutter. He said that most likely she does not see anything. A year ago Carmen was still tracking objects. This disease progresses so quickly and so relentlessly.
Thank you Wendy for watching Carmen on Monday so I could take Lauren out! Lauren was very happy to have “mommy-time” and totally enjoyed her Panera Cinnamon Crunch bagel!
Yesterday as I was unpacking my grocery bags, Lauren saw a can of tuna. She looked very worried and upset and asked, “Mom, you aren’t going to cook a mermaid, are you?” I love 4 year olds!!!
I would like to:
1) Take professional looking pictures. The kind that make you go “WOW!”
2) Speak fluent Spanish.
I absolutely love beautiful pictures. They make me happy. Especially razor-sharp pictures that pop off the page. I am finding that actually taking a picture like this is impossible when you don’t know what you are doing with your camera! So, I’ve been reading up on photography, practicing, and making my “wish list” of lenses! I have a loooonnnngggg way to go!
Before Carmen’s diagnosis, I felt very strongly that Carmen needed to know Spanish. We live in a very diverse area with a large Hispanic population. I didn’t want Carmen to grow up here and not speak Spanish so my thought was that we all needed to learn Spanish! (Dave speaks some Spanish but he would like to be fluent.) Lauren took a Spanish class and loved it. After Carmen’s diagnosis, learning Spanish dropped off my radar. But, I have hopes that someday we will learn the language and that someday we will go back to Guatemala.
I have no plans to actually start learning Spanish at this point but it is a skill I would love to have!
What skill(s) would you like to have???
Dave took this picture yesterday and I think it is really, really good! These are roses from my birthday.
Thank you so much for all the wonderful birthday comments!!! You all made my day!
My day started when I went downstairs to find that Dave and Lauren made breakfast for me: scrambled eggs, toast and raspberries. Before he left for work, Dave gave me a birthday party invitation that he and Lauren made. 5 o’clock sharp I was invited to a party with fun and games, cake, and birthday presents.
My friend Karen brought over a present: scones and green tea. Thank you Karen! The tea is amazing!
The girls and I went to my friend Lori’s house for birthday lunch. Lori knows me well and made a big salad with lots of avocado! Thank you Lori!
My birthday party time arrived and Dave had red roses, balloons and princess decorations! He got chicken kabobs for us and pizza for Lauren.
After dinner, it was time for birthday cake. Lauren picked up the cake and down it went. Upside down on the kitchen floor. It was one of those moments when you see that your child is crushed and big tears start pouring down her face. It’s not one bit funny but you have to hide your face because the whole event is hysterical. We cleaned up the frosting and ate the cake. It was delicious.
Thank you Dave and Lauren for all your hard work. Thank you for the Christmas CDs, movie and book. I love you!
Here are some pictures from my party:
Me with balloons and Carmen with a birthday hat (Carmen has slimmed down considerably since we cut her calories to 500 per day. She looks so much better and her breathing sounds great!)
Lauren anxiously watching the animal balloon-making, afraid the balloons might pop. When Dave finished the dog, she was happy!
The salvaged 33rd birthday cake!
Yesterday an amazing 6 year old lost her battle to Sandhoff, a disease very similar to Tay Sachs. We met Riley and her parents at the Tay Sachs annual family conference in March. Riley’s parents took such wonderful care of her. We will be praying for this wonderful family today and in the coming days. Please consider leaving a note on Riley’s caringbridge site. http://www.caringbridge.org/visit/princessrileybear
For my friend Karen:
My favorite food is really good Indian food. Every birthday I ask for Chicken Tikka Masala from this yummy place called Tandoori Nights. My neighbor shared a recipe for Chicken Makhani (Butter Chicken). I made it and it is really good! I will warn you that your house will seriously smell like curry and garlic so maybe have some chocolate chip cookies ready to bake for a better smell!
The base of this recipe uses a paste by Kitchens of India (see picture below). I did not follow the recipe on the back of the package but used my neighbor’s recipe. I did not put any butter in the butter chicken dish so the name is a bit misleading!
Butter Chicken
1 package Paste For Butter Chicken Curry by Kitchens of India
1 lb. boneless, skinless chicken breast or tenders, cubed
1/2 small onion, minced
1 tsp. Coriander seeds
2-3 cloves fresh garlic, minced
Slice of fresh ginger, minced (about a small chunk of it!)
1/2 jalapeno (optional), minced
Basmati Rice
Saute minced onion and slightly bruised coriander seeds in a small amount of olive oil. Add minced ginger, garlic, and jalapeno (optional) and cook until limp. (I minced all of the ingredients really fine with a food chopper.)
Brown chicken. Add sauteed vegetables and curry paste and 1 cup water. Cook on low for 20 minutes and then high for a couple of minutes until thickened.
Serve with steamed Basmati rice, steamed broccoli and Naan bread (I buy frozen Naan bread at Trader Joe’s.)
Carmen update: Carmen is doing OK. I picked up lab slips and specimen containers this morning to do another 3 day C-diff test. If Carmen does still have C-diff, which I am sure she does, then the next step is IV antibiotics. All of these antibiotics aren’t doing a thing for the C-diff but they must be helping her lungs as she sounds the best she has in months!
This morning I got up early and went to vote! I stood in line in front of a friend and he told me that his dad became a U.S. citizen just a few months ago and is so excited to vote today. So, don’t take our voting rights for granted. You still have time. Go Vote!!!
Here’s my sticker to prove it. (I got a free cup of coffee for wearing my sticker into Starbucks!)
Carmen update: Carmen continues to have diarrhea. She is on her 6th week of antibiotics to try to get rid of C-diff but nothing is working. Tomorrow I will call Carmen’s pediatrician and Carmen may be referred to an infectious disease specialist. I bet you will all be happy when I stop updating about poop. I know I’ll be happy to stop talking about it! I’ll be REALLY happy to stop cleaning up poop! Carmen’s seizure activity has increased over the past few days. She is maxed out on Keppra and Phenobarbital and also gets Ativan four times per day. We may have to start another seizure medication if the seizures become more distressing to her.
We survived Dave being away! My face broke out like a teenager but we survived. Big thanks to everyone who took Lauren to school and brought her home. Every week I am so thankful for all of you and this week I was extra thankful!
On Monday Monica the Magnificent brought over Chick-Fil-A. Yummy! Monica also brought puzzle books for Lauren. Does she know Lauren or what!?
Thank you Monica!
Tuesday I took Lauren to school while the nurse stayed with Carmen for the morning. I then went to the gym for a nice elliptical work out. I hurried to the grocery store and got milk, bread, etc. Then, I drank the calories I had burned off at the gym with a Starbucks Pumpkin Spice Latte! (Hey, they are going to stop making them soon, right? I have to hurry and drink them before there are no more!) My friend Lori came over with fruit for lunch, which was good considering the latte. Thanks Lori!
Wednesday a friend took Lauren to school and then to lunch. While Lauren was gone I got some stuff done around the house. One fun thing I had to deal with- crossed Verizon phone lines. Every time someone called us, the line crossed with another Verizon customer. The phone calls were being routed into both our house and the other Verizon customer’s house, at the same time. I had a three-way conversation with the Verizon customer and a friend of mine. Confusing enough for you?! It seems to be fixed now, which is good!
Thursday Dave arrived home just in the nick of time to go to Lauren’s class singing. She was sooooo excited! I ran some errands on Thursday and my neighbor, who had locked herself out of her house, came along with me!
Friday we had several friends over and then I took the girls for their flu shots. Let’s hope they work better this year than last. Last year was the first time we got flu shots and the first time we all got the flu! Well, all except Carmen who miraculously did not catch the flu from us! I can’t imagine how hard the flu would be on Carmen so we are praying she gets through the winter without colds, pneumonia or the flu. Or anything else bad!
Well, that’s our week in a nutshell. Always an adventure around here!
Last night we went to our church’s annual Harvest Festival. Lauren dressed up as a cat and Carmen was a princess. About 30 seconds after arriving, Lauren took off her cat mask and cat tail so that she could bounce around in the bouncy house! Carmen slept the entire evening and only woke up when we arrived home.
We didn’t come home with much candy, which is good and bad! Good because none of us need candy. Bad because Dave and I were looking forward to eating all of Lauren’s Reeses Peanut Butter Cups, Mr. Goodbars and Snickers! (Lauren is allergic to peanuts.)
Thank you, Jin, for letting us borrow the cat mask! Lauren loved it!
Here are a few pictures:
Lauren the Cat and Carmen the Princess
Me and tired Lauren
Lauren getting her face painted
