PANDAS

When you read the word PANDAS, what comes to mind? If I had a guess I would say that you think of a giant black and white bear with big black eyes, hanging out in China, and eating bamboo. That is the image I assume most people would conjure. What do I think of when I hear the word PANDAS? Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus... a condition found in children who have contracted strep throat (or similar illnesses) or some children on the autism spectrum who have encountered children with strep throat.

Evander and I had never heard of PANDAS before visiting The Thoughtful House. So...when the doctor made a joke about his panda photo on the wall, we were clueless. Then he began to ask questions and explain. Do either one of you contract strep throat often? (Yes...I get it exactly twice a year, every single year) Have you been tested as a strep carrier? (No) Have you noticed when you begin feeling symptoms of strep Bubba's behavior changes? (No, but I would never put the two together) PANDAS means that when the body is fighting off a strep infection something goes terribly wrong, gets confused, and begins attacking parts of the brain as well. It is essentially an autoimmune attack on one's own brain. PANDAS can cause neurotypical children to exhibit signs of ADHD and/or autism when they contract strep throat, and it can cause children on the autism spectrum to temporarily regress. These children exhibit tics, hyperactivity, OCD, etc. It is rare, but always on my mind.

All day Friday, Bubba wasn't saying much or interacting with anyone. I blew it off because we were in the car all day. Friday night, when we arrived in Clanton, Baby was running a fever of 102.2. I gave her some Motrin and put her to bed, hoping she would be better in the morning. Saturday morning Baby awoke with a fever of 100.5 (much better and probably just a cold) and seemed to be playing well. Bubba, on the other hand, was a terror. He wasn't satisfied with anything. There was no toy, no juice, and no snack good enough for him. He was clingy, defiant, aggressive, and doing this weird new thing with his hands. I, again, assumed it was because we had been in the car for 12 hours the day before and he awoke in a new place. May Bee came over to watch them, so I could go to the hospital, and I warned her of Bubba's horrific mood and Baby's subtle fever.

Sunday went on much the same way until Baby awoke from her nap. She stumbled into the den, a sweaty mess, and began crying for me to hold her. When I picked her up, I immediately felt the fire radiating from her skin. I took her temp and found it was over 102. At that same moment, Bubba began screaming, and it hit me. I turned to my momma and said, "We need to get her to a doctor. She has strep." "You think?" my mom said. "Yes!" After 30 minutes of myself, my mother, and Evander (via computer at our house in Texas) searching for an after hours physician in Alabama, we finally found one in Hoover (an hour away).

We waited in the waiting room of the urgent care office for over two hours. During this time, Bubba was repeatedly jumping off the chairs and couches, moving furniture around, and running back and forth to the restroom. He was extremely hyper. Finally we were called back. I thought the nurse would never finish asking questions and checking vital signs before the doctor came in. Then he appeared. The doctor looked her over and lastly, looking in her mouth. "Tonsillitis" he proclaimed. "What about strep?" I said. "Oh, children under 2 typically don't get strep. It's very rare," he rattled. "She has had it before and I am worried she has it again." "Well, we will test her but I just don't think that is the case" he replied.

Ten minutes later, we exited the urgent care with a positive strep test, a prescription for an antibiotic, and a stunned physician. It took me almost three days to put all the signs together, but I did. I hate that strep affects Bubba in this way, but I am also glad that it does. He was my warning sign. He helped me to know that it was time to get her to a doctor. So, maybe now, when you see the word PANDAS, you will think of something other than a cuddly, fat, black and white bear.

Prayerful

(Warning: This one is a little heavy)

I was raised to be a good Southern Baptist girl. I went to Sunday School and "Big Church" every Sunday and participated in all the children's and youth events. I sang the hymns and bowed my head in prayer, but it wasn't until I became a Catholic that it all began to have a meaning and I began to have an excitement about my religion.

While completing Catholic conversion classes, I learned to pray the rosary, which became my prayer of choice. With this, I felt that I was really making a connection and I was part of something bigger. I began to recite the rosary on a daily basis, and I carried a rosary with me every where I went. When I had a good day, I would pray the rosary. When I had a bad day, I would pray the rosary. It was beautiful!

Then came Bubba's adoption. I was praying everyday, sometimes more, but I felt helpless. He wasn't able to come home, and I couldn't be with him. I spent all of my days checking Guatemalan message boards, my cell phone voicemail, and my email hoping for something...anything. Just when I thought I couldn't take any more, I found out I was pregnant, and that was it...the last straw. It broke me.

At 10 am on Wednesday at the end of July, I checked the message boards and my email for the last time. I pushed my chair away from the computer and collapsed to the floor, sobbing. Out of know where, I began to pray. I prayed a real prayer. It went something like this:

"God, I'm done. I'm done checking. I'm done asking when and I'm done caring. Right now I have the possibility of being a mom to two babies, but I'm not sure that I will actually ever be able to hold either one. I'm afraid of losing the baby inside and the baby in Guatemala, but I just can't worry anymore. It's all Yours! The fear, the nervousness, the worry, and the anxiety...it's Yours. If I'm not meant to have children then take them both. I will understand, but do not give me hope and then snatch it away. I just can't take anymore. Do what you want! It's in Your hands! I'm done trying!"

With that, I stood and wiped my eyes. I can see it as if it were yesterday. Fifteen minutes later I received a phone call that Bubba could come home. The next day I had an ultrasound that showed my baby's beating heart, and I have never prayed again. I have never said another rosary or recited the Lord's prayer in church. The only thing resembling a prayer is the bedtime prayer I say with my children each night. I'm sure most of you are asking why? Why wouldn't I pray when I have been so blessed? I suppose I have been afraid of tempting fate, but all of that has changed.

After spending a week at the hospital with my parents, I was picked up at the airport by my family. I immediately showered the kids with hugs and kisses and jumped in the car. "We missed you Mommy" they said, just as they had rehearsed with Evander moments before (I'm sure), but it was still nice to hear. I then began telling Evander about my trip and how everyone was, when Bubba interrupted me.

"I miss you Mommy!" he said. "Thanks" I replied and continued talking.

"Grandaddy sick, Mommy ?" he asked. "Yes baby! Grandaddy is sick but he is getting better." I uttered and picked up my conversation.

"I prayed for you!" he said and I froze. I looked at Evander and then back at Bubba.

"Did he just say what I think he said?" I asked Evander. "I think so" chuckled Evander.

I reached back and grabbed Bubba's leg. "Thank you" I murmured and quickly turned so that he couldn't see the tears welling up in my bloodshot eyes.

Tonight I found a pocket-size prayer book that Evander's grandmother had given me during Bubba's adoption. In it, she had marked her favorite prayer, Guardian Angel Prayer. Tonight I prayed this prayer with my children.

Angel of God,

my Guardian dear,

to whom God's love

commits me here.

Ever this day

be at my side;

to light, to guard,

to rule and guide. Amen.

Bed side manner

The room is like a shotgun hallway that has been blocked by deep tan colored walls on each end. The smell of burned coffee is overwhelming and the concern of germs is exhausting. The sound of nervous laughter fills the room as strangers try to forget their troubles and find some sort of awkward comfort in one another. The knowledge that we share the same worry for a loved one forges a bond between us.As I sit in the ICU waiting room, I am trying desperately not to focus on the paint that has been chipped from the wall or the desire to seek out a Clotox wipe to scrub a dingy spot off the floor. Then, a member of the Pink family speaks to me. "We are running down to get something to eat but we will be right back." With that I am instantly brought back to the real world.There is an unwritten rule that you must checkin with the other waiting families. Each one knows where the other has gone just in case a doctor stops in or the phone rings. The waiting room is our base camp, where we may always be found. I have eaten meals with these families, answered calls for these families, and slept with these families. I have even comforted these families after receiving devastating news. We check on one anothers progress, as if their family member is one of our own.While I'm not sure how many days I've been here (because the days are starting to run together) I have been amazed by this experience. Only days before these people were strangers but now they are friends. Despite ethnicity, social standing, or regious beliefs this community of ICU family members has formed a support system for one another. The way people come together during hardship will always fascinate me. Why can't it always be that way?

Best Christmas

What was your best Christmas? This past Christmas week, my mother posed this question to me, a question for which I had no answer. My mind was instantly flooded with the gifts I received: my Samantha doll, a new computer, a big girl bike, the perfect stereo, but no one Christmas stuck out in my mind. My answer to her was that every Christmas was great. I was always very excited on Christmas morning and was never disappointed. Now, though, I can appropriately answer the question.

On Christmas Eve Evander, Momma, Daddy and I stayed up pretending to be Ho Ho. We acted as Santa's workshop in overdrive, constructing a gigantic playhouse, piecing together a doll bed and stroller, and stuffing stockings to the rim. We gathered and piled presents and set everything out just so. I placed some gingerbread cookies on a plate and took them off again, so the crumbs would seem real. I also poured a glass of soy milk and poured it down the drain, just for that special effect of milk scum at the bottom of the little green cup. When we decided that everything was perfect, we went to bed (Evander slept on the couch with Bubba and I slept on Baby's floor to make sure they didn't wander in the night).

At 4:45 I awoke, thinking it must be time for them to start getting up, but no one was stirring. My anticipation may have been higher than the children's but I was dying. I couldn't wait to see their faces and finally, an hour later, Bubba began to awaken. Evander quarantined Bubba in our bedroom while I ran to wake up my parents and Baby. When everyone was ready, we all walked into the Christmas tree room (where Ho Ho left all the gifts). The looks on their faces was more than I could have imagined. There was a twinkle in their eyes, a little sign that said, "I believe". They were both so overwhelmed they didn't know what to do first. Bubba's eyes immediately found the tractor that scoops up cars, and he would have been done after that if it weren't for Evander urging him to look through his stocking. Baby was in complete shock. Before her stood a pile of gifts and the baby doll she had wanted. She also saw Elmo and Abby peeking out from inside her stocking.

To see their reaction as they tore the paper off the playhouse was priceless, but so was the entire day. To see the twinkle in their eyes was a gift, the best gift I could ever receive. The magic of Christmas is alive in their hearts and they truly believe that Ho Ho brought those gifts for them. They could not be happier, and I am thankful that we could provide that for them. I am also thankful that my parents could experience this special Christmas with us. The was my best Christmas ever.

Breaking News

There are many things in life that we all take for granted; things we assume everyone has. For instance, everyone is, of course, thankful to hear but rarely, if ever, think of it until he/she loses the ability. The same principle applies to laughter and friendship. I can honestly say that I have never said, "Wow, I'm really glad that I can laugh." But now I do. Now I thank God for many things that I have. Why? Because, up until recently, my son was not blessed with theses gifts.
Yesterday afternoon, I wheeled into the carpool lane at Bubba and Baby's school, hopped out and ran in their teachers' holiday gifts. Tucked neatly under my arm was an oversized orange envelope which contained a special frog birthday invitation to Bubba's pool party. He had mentioned a little boy in his class a few times, so I hoped to invite this "friend" to his party. I poked my head into Bubba's classroom and found his teacher busily stuffing backpacks, and I asked, "Does Bubba have any friends at school? You know someone who might try to play with him?" The answer I was expecting was "Yes there is a little boy who tries to play with him or helps him put his shoes on" but that is not what I got.
"Well...he has a lot of friends."
"He does?"
"Yes, he has been playing with everyone very nicely."
"Wait a minute. Do you mean playing WITH or playing NEAR? Do you mean playing the same thing or actively playing the same thing together, with another child?"
"Oh, he plays with, but he does have one real friend."
"A friend? A real friend? One that he plays with everyday and talks to and shares toys with? One friend?" Tears began to fill my eyes.
"Yes, his name is Juan (not his real name of course)"
"Oh my gosh! Well...please put this invitation in Juan's backpack for me."
I tried to compose myself before I left the room. Just as I turned the corner, Bubba ran at me with arms open wide. Then came Baby with lop-sided pig tails. On the way home we talked about their day...snack, lunch, going potty, and playing. Once inside the house I put on Wall-E, poured a snack and water and sat down next to them on the couch. I was still trying to get over my excitement about Bubba's friends when Belle began sliding off the couch. First her butt went and her head slowly followed. She was trying desperately to hang on, digging her nails into the fabric of the couch, but it was no use. She splattered onto the floor, as if she had fallen 100 feet.
Bubba immediately began laughing. Then he laughed harder and harder. He fell back onto the couch and curled into the fetal position as he roared with laughter. "Mommy, Belle slid off the couch!" he squealed and continued to laugh.
I sat there, staring, as if I had just witnessed a man landing on the moon. As the Little Einsteins would say, "I CANNOT believe it!" Bubba was laughing! He was actually laughing a real laugh and I was there to witness it. Sure...he has laughed before, when someone else laughs or he senses that he is supposed to laugh, but he has never just laughed. This was honest and sincere. It was a direct reaction to something only he found humorous. Baby and I were not laughing, but I sinced that Baby recognized the importance of this moment. She, like me, was staring at him with eyes wide open in amazement.
Many parents have the joy of seeing their baby's smile for the first time or coo when they are spoken to, but we did not have that with Bubba. He is only now beginning to show emotion and these small glimpses are beautiful. I cannot say that I have seen or heard anything more heartwarming than his smile and laughter in that moment. Be grateful for what you have, because everyone may not be so lucky.

Calmness in Conversation

There have been many occasions over the past 2 1/2 years that Bubba and I have stared down one another in complete and absolute frustration because of the communication barrier that autism slapped down between us. There might as well have been an actual brick wall between us with him gesturing and screaming on one side, while I am searching for a crack in the mortar just to get a glimpse of any potential non-verbal communication that might aide me in figuring out why he was screaming at the top of his lungs on the other side.That wall is crumbling.

Just as citizens stepping through the border crossing of Berlin signaled the fall of the Berlin Wall, Bubba's break-through sentences meant our wall was coming down...brick by brick. This week he has really begun to have mini-conversations with us. He has started to ask, "What you doing?" or "Where are you going?" I have begun to include him on conversations about our dinner menu or what he might like to do in the afternoon. He is just now able to understand these concepts and he is beginning to reason. He now tells Baby "I'm sorry" or "It's ok, Baby" He told Baby today that it was too cold to go outside and play. When she asked again he told her she needed a jacket to go outside because it was chilly. Amazing!

It has been interesting to see that as his speech grows, his anger and aggression dissipates. The more he can communicate the happier he is. There is a calmness in his conversations that I have never seen, but this makes him even more frustrated when he cannot get out what he is thinking. He has begun to studder a bit, but I think it is because his mind is going faster than his mouth. We have always said that Bubba was extremely smart, but we had no idea how smart until he was able to communicate. Now, we are amazed at the comments he makes or the observations he notes. It has been a long and arduous task for him, but the wall toppling. He is about to break right through it!

Anxiously Awaiting

Bubba making sure his stocking is just right.

Christmas has always been my favorite holiday, and I suppose it is because of my mother's love for Christmas. Each year our house would be decorated beyond belief with lights, trees (big and small), Santas (big and small), snowmen, garland, and candles. Our special stockings were always hung with care on the mantle to await Ho Ho's arrival. We would begin playing Christmas music just after Thanksgiving and carol singing filled our house. My mother would make cookies and candies with us (myself, my niece, and my nephew) and never minded that we licked our fingers before scooping the pecans out or took a little taste and then dipped it in chocolate. I learned to desire and appreciate the family and joy of the holiday more than the gifts I may receive.
So it is no wonder that I have carried on the traditions with my children. This is the first year that we will be staying in Texas for Christmas, and I couldn't be happier. I pulled out every decoration that I own. We had our house trimmed in lights and purchased a real tree. Bubba and Baby even have little trees in their rooms (both Wal-Mart musthaves before Thanksgiving). Bubba has a lovely purple tinsel tree decorated with CARS ornaments, while Baby has an elegant bright pink tree dawned with Princess ornaments. A silver snowman family is holding on to our stockings while trying not to get pushed from the mantle by the garland lurking behind them (or pulled off by the children in front). My precious moments snow village collection is carefully displayed atop the kitchen cabinets, totally out of reach of little fingers.

Baby kissing a sheep from the Nativity scene.

Both kids are so excited. They love looking at all the lights and enjoy the house being decorated. They also like decorating the tree undecorating and redecorating (a daily occurrence). I purchased GFCF gingerbread mix and non-rice krispies for Rice krispies treats. I even found a way to make my mom's famous bon-bon balls and still be GFCF.

We went to see HoHo but only Bubba would even approach. I was amazed at how nicely he sat NEXT to Santa (but would not let Santa touch him), but quickly found out the reason. As I motioned for him to get up he burst into tears. I was puzzled! Usually that happens BEFORE Santa, not after. "What's wrong?" He sobbed, "My tractor that scoops up cars..." Then it hit me, and I began to tear up. I felt horrible!

I have mentioned many times just how literal Bubba is but it always continues to hit me in the face over and over again. Since before Thanksgiving he has asked for only one thing, a tractor that scoops up cars (more specifically the Screaming Banshee tractor from the Cars movie, but that's not what he says). Evander and I have reassured him that, if he is a nice boy, Santa will bring him the "tractor that scoops up cars". Well...he took that for what it meant to him. He thought that if he was nice to Santa, he would give him his tractor. When that didn't happen, he was stunned! He thought he must have done something wrong. After calming him down, we tried to explain in different terms, Bubba terms, how the holiday would go down. Now he just asks about the tractor every day.

Christmas is special for many reasons to me. This year I will get to experience Christmas in my home through my children's eyes. I keep trying to imagine their excitement on Christmas morning and a smile comes to my face. I would like to carry on my mother's traditions (with her help) and maybe add a new one (going to Christmas Eve mass). I want to make this holiday as special for my children as it is for me.

Bubba's tree and Baby's tree