In the tradition of black/white photos of my dad and my kids on the beach:
Lucy made the critical discovery that sand is NOT in fact, edible:
Our beach trip was GREAT! We spent most of the time playing on the beach with the kids. They loved digging in the sand and running back and forth, in and out of the water. Then they discovered sand fleas and spent a good amount of time digging along the shore to catch as many as they could. It was a practically perfect weekend!
We are planning on making our first trip of the year down to the ocean this weekend! I am so excited! Both the kids are obsessed with sand play so hopefully they will park it on the beach for a few hours so mommy and daddy can work on their healthy "glow". I will take lots of pics to share as always :)
Lucy is doing okay. Heat is just not her best friend, so the days that are cool she is happy but once it gets up near/above 80 she starts to get messy. She says her skin is "ishy" (itchy) and has had a few rounds of the big "D" that have renewed my appreciation for the leak guards on Pull Ups. However, none of this stops Lucy from enjoying the playground, sandbox, or any space outside for that matter. My kids are content just to run amok in the field behind our house when the sun is shining.
In other news, I am fighting an infection in my face. Yes...my face. Antibiotics are taking care of it, but I am absolutely praying like crazy that I am not doomed to deal with these infections continuously the way I did as a teenager. Its both physically and emotionally painful to have a portion of my face red, swollen, and burning constantly.
Anyways, I will update once we are back from the beach! Enjoy the holiday!
I had completely forgotten about this video of Lucy having an episode of Sandifer's Syndrome until another frightened mother from the UK emailed me after seeing this video on youtube a few weeks ago. I cringe watching it even now.
I posted the video to youtube two years ago in order to show one of our doctors after I had finally worked up the courage to even ask about it. At the time she was around 4 months old, but had been having these episodes since we had brought her home from the hospital. With her weight gain issues, respiratory problems, constant vomiting, hospitalization, and 20 hour a day screaming I was purely terrified to ask for help with yet another issue. I was scared that this was some horrible form of seizure that was destroying her brain. I remember I was waiting for the ceiling to come crashing down; I was waiting for her to have just ONE more health crisis before I would have a nervous breakdown. Back then I was scared all the time for my baby and completely overwhelmed.
I am glad we aren't in that place anymore. I feel relieved we have doctors that know my daughter well and that I don't have to constantly feel paranoid. I have educated myself as best as I can on her disease and any complications that can stem from it, and that gives me a lot of comfort. Sure, I still worry about Lu....A LOT. Yep, I still check on her at night to make sure shes breathing. Of course, I have a hard time leaving her with a babysitter to go out and have some kid-free fun every once in a while. But, none of these worries compares to the fear I had that I wouldn't get to keep Lucy back when she was a tiny thing. Lucy's life may be a little "different" from most toddlers, but seeing this video and realizing how far she has come leaves me feeling quite satisfied with where we are at right now. Lu's differences are not so overwhelming anymore, they are just another part of life and life goes on.
*incidently, the mother that emailed me about the video decided to get a second opinion for her daughter after seeing Lucy's video. Her daughter was diagnosed with Sandifer's Syndrome at the second appointment and is hopefully now on the road to treatment!
Yep, THIS sweet face is the face of guilt. She did it. She did it without hesitating. And now, shes lost her crayons and markers for 2 two whole days.....
Lucy discovered the exhilarating joy of coloring on the walls... and furniture...and doors, with non-washable markers. My kids have a magical way of finding the random rare non-washable writing utensil we have laying around, and using it to color all over everything within their reach. Zachary did the same thing with a PERMANENT marker ALL over my new bedroom dressers when he was 2.
So, Lucy's box of crayons will sit on top of the entertainment center for 2 days while she thinks about what she did (and I am starting to think that coloring on the furniture and walls is totally worth it to her). I also made her clean off the TV she colored on, however, she just thought that was fun so I wasn't able to achieve any satisfaction there.
We had a wonderful Mother's Day! We started the day with church, then stopped by Zach's mother's gravesite, and then spent the afternoon at my mom and dad's. I took some pics, just tinkering around the yard. My mom is a gardening "enthusiast" so I took some photos of her flowers. The kids discovered a catapillar and were completely obsessed with their new "pet". Lucy nearly loved the little fella to death but Aunt Bridget managed to wisk him away to take a nap in quiet patch of grass far far away.
Unfortunately Lu was up ALL night with her belly, so today will be a long and grouchy day.
I took Lu up to see the dentist yesterday. It didn't go well. She needs to have a cavity in her front tooth filled!!! Ahhhh! I feel so bad! Who lets their 2 year old get a cavity??? Okay well I guess I have an excuse- a complete lollipop, ice, and formula diet works against me and the fact Lucy cant use toothpaste because of the additives doesn't help either. I just feel terrible about it though.
We go in to get it fixed June 12th. It will NOT be fun for her or me. I am terrified of the dentist. I havent been myself in like 4 years. The last time I went I sweated through the chair. It was embarrassing as heck leaving the office with a soaked back. Watching Lu get her tooth drilled and polished with a front row seat is likely to make me hurl. And somehow not only do I have to get through it, but I have to help Lu get through it. I cant show her I am afraid or else she will be afraid too.
I started up this page in order to continue keeping our family and friends updated, especially on our daughter Lucy. We truly appreciate the love and support we get from those who always seem so concerned for our daughter and try to do our best to keep everyone informed as things change!
Lucy
A Little About Lucy...
Lucy had a very normal birth and pregnancy, however, before we could even get home from the hospital with her she began having health problems. Immediately after birth Lucy began to deal with continuous vomiting, feeding refusal, GERD, severe stomach pain, and diarrhea. She was underweight and in constant pain by the time she was 2 months old. Lucy was quickly put on an amino acid based formula as our doctors searched for answers. After years of tests and continual health problems, Lucy was sent to an out of state hospital for specialized testing. Her diagnoses currently include GERD, Sandifers Syndrome, Asthma/RAD, Raynaud's Phenomenon, Failure to Thrive, Visceral Hyperalgesia, Delayed Gastric Emptying, and small bowel dysmotility. Lucy is now 5 1/2 and remains unable to eat anything at all by mouth. In June of this year she had a procedure called a Roux en Y in order to surgically place a feeding tube into her small bowel. She is on continuous feeds into her small intestine via a feeding pump, and her stomach is drained most of the day into a separate bag. Despite everything, Lucy still manages to live her life very much like your average 5 year old. She loves ballet and is learning to read! Her strength amazes us everyday.
Zachary
A Little About Zachary....
Hes our silly little guy that always keeps us laughing. Hes a protective big brother to his baby sister and is an easy going guy. Zachary has been diagnosed with Non IgE allergies to corn, milk, soy, and gluten after dealing with years of slow growth and stomach pain. He takes it all in stride though and never complains! Zachary has also been diagnosed with PDD-NOS, an autism spectrum disorder, as well as an anxiety disorder. We happily homeschool him and he is making great strides with his learning, social, and physical delays. He loves legos and Harry Potter, and is doing great with reading and drawing. Hes our happy little man and we wouldn't have him any other way!