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

Week In Review

It's been one of those weeks. So bad, in fact, that when my niece walked in our house yesterday she paused for a moment to look around. We hit the ground running after Thanksgiving and had no time for silly things like house cleaning.

Monday: Bubba had an ENT appointment to see if his latest sinus infection had cleared. I was so proud of us because it was relatively uneventful. Both kids used the potty before entering and waited patiently to see the doctor. Once in, the doctor told us Bubba needed sinus surgery sooner than expected. We scheduled our surgery for January 20 and received papers for pre-surgery blood work (with an appointment scheduled for Tuesday at 9:15).

Tuesday: At 2:00 am Baby stumbles into our room with a 102 degree fever and smelling as if she had just emerged from a restaurant's garbage dump. We changed her, gave her some Motrin, and put her back to bed. She has had an upset stomach since Friday afternoon (the day after Thanksgiving, so no worries). At 8:00 am I began to get Bubba ready for his 9:15 lab appointment and decided I would just scoop Baby out of bed in time to make it to the appointment. At 8:30 Baby shuffles down the hallway with a 102.4 degree fever after dumpster diving for a second time. I immediately kick it into high gear! Baby doesn't run even the slightest fever unless something is wrong, so I squirt some Tylenol into her mouth as I dial the pediatrician's number to speak with the nurse.
I have learned that it is never a good sign when the nurse says, "Yeah...I think something more is going on. Let's get her in first thing." GREAT!! Now I have to find the Children's Hospital Lab phone number to cancel our appointment because we are double booked for 9:15. After moving the appointment to Thursday at the same time, I throw some clothes on Baby and we head for the doctor. I have failed to mention until now that Baby is not experiencing run-of-the-mill diarrhea (if there is such a thing). It looks like she pooped green snot with blood. Not good!
After checking in at the pediatrician's office, my cell phone rings. I am fully expecting it to be Evander on the phone so I answer in a "Why the hell are you calling me right now because you know I'm at the pediatrician's office with two kids" kind of tone, and I hear "Mrs. Gregory?" on the other end. Not Evander...it instantly clicked. I had a phone conference with Bubba's DAN! doctor at 9:15 today. Whoops! I quickly explain that I have a very sick child and will have to call at a more convenient time, and just then our name is called.
Once in the back, I began to calm down a little. I was finally able to take a deep breath, and I felt something wet on my leg and hear a splat on the ground. I looked at the floor to find bloody poop drops covering the floor and my jeans. I ran to get the nurse and then cleaned baby up. So...here we sit with poopy jeans, a poopy diaper (that the doctor needed to see), a really high fever, and Bubba licking the mirror, when the doctor comes in. A poop sample is required to determine what the cause of Baby's sickness is but I am told it is most likely E Coli, Salmonella, or Shigella that was contracted while traveling. There is, of course, not enough poo in the diaper for proper collection so I bring back a nice little sample at 2:30 and continue poo cleanup and fever control for the remainder of the day.


Wednesday: Baby's fever has broken, but she still isn't feeling well. I have a hair appointment, so I would love for both children to go to school, but it isn't the right thing to do. I did, however, call Evander to ask his opinion so I wouldn't have the option of leaving Baby at school if the thought occured again. Baby and I drop Bubba at school and head for my hair cut.
We had a relatively uneventful day (if you don't mention the constant pooping) and picked Bubba up at school. Around 5:00 I began making dinner and Bubba required my attention in the bathroom. When we emerged from the potty, I realized that my shadow (Baby) wasn't with me. Then I heard, "NO baby!" coming from the master bath. I ran in to find Bubba holding an open bottle of cough medicine and a heavy fruity smell coming from Baby's mouth. "Did you drink this?" I asked. "Yeah!" Baby replied. I, then, took the bottle from Bubba and noticed that it was nearly empty.
The poison control went as follows:
"Hi...my 20 month old just downed 1/2 a bottle of cough medicine while I was wiping my 3-year-old's butt. What do I need to do?"
"What did she drink?"
"Delsym"
"And how much?"
"I have no idea. I know the bottle was about half full and now it is virtually empty."
After we performed an estimate calculation of the amount she drank and determined that Delsym is a children's cough medicine that has dextromethorphan, which is harmful in large doses, she said, "You need to go straight to the emergency room for observation. I will call ahead to let them know you are coming."
FABULOUS! I was expecting a watch and wait sort of answer, not a go to the ER answer, and I couldn't go immediately because I had dinner on the stove and two half-naked children running around with a dog that just peed in the floor. I quickly clothed them and plopped some dinner in Tupperware containers and called Evander as I was walking out the door. As we wheeled into the ER, a nurse was at the door waiting and rushed us back. She asked me all the usual questions, and I disclosed our potential bacterial infection/explosive diarrhea.
After seeing the physician's assistant, we were told that she needed to be under observation for 4 hours. Evander came and took Bubba home, which left Baby and I to roam the ER for hours on end. We walked up and down the hallways, pulled out untouchable drawers, intruded on patients' privacys, and changed 5 diarrhea diapers. We saw a man come in and die, a stabbing victim, and several elderly people, and Baby waved to them all. I was at my wit's end, but she never shed a tear. Just when I couldn't take any more, the nurse came in to take Baby's vitals said she was looking for the PA so we could leave. YEAH! It was a good thing because Baby was now down to wearing one of Bubba's pull-ups. One more explosion and someone was going to search out some diapers.
Two minutes later, car accident victims came in, and I could tell we weren't leaving. We ended up staying in the ER for around 5 hours. We met the dead man's family and the mortician who came to pick him up, the friends of the stabbing victim (and I'm not sure that one of them didn't do the stabbing), and several police and fire men. Baby went home, had a snack, and went to bed.

Thursday: Evander and I dragged ourselves out of bed to get ready for the day. Bubba's lab work was today, but I knew it wouldn't take long. I was lost in thoughts of slipping back into my pjs when stinky Baby shuffled through the door to our room. I changed everyone into their comfiest outfits and headed to the Children's Hospital. We arrived at 9:10, ran into the restroom and headed for the lab. I didn't bring juice or snacks because I was certain that we would be out of there by 9:45 at the latest. After the past few days, I should have known better.
At 9:45 we are finally called back for the lab work.
The plebotemist says, "You know he is getting a chloride sweat test today?"
"Yes...and blood work!" I replied.
"Do you have any questions before we begin?"
"The ENT didn't really tell me much, other than it only took a few minutes so I don't really know what I could ask."
"OH! Let me get you an info sheet."
After reading the info sheet, I was in shock for a number of reasons.
1. A sweat test is used to diagnosis cystic fibrosis.
2. The test takes up to 45 minutes.
3. The test is performed on BOTH arms.
4. It involves an electric current.
AAAHHH!!! I was unaware that we were being tested for cystic fibrosis. I thought this test was just something that needed to be done before surgery. My shock was also not because I think he could actually have it, but just the fact that he was being tested for it. I think someone should have given me a heads up. My next problem was that I brought NOTHING for them, trusting that it would literally take a few minutes...not hours! Last but not least is the current. Most children probably would not have a problem with a tingly arm but arms and hands are Bubba's most sensitive areas and he freaks when anything unusual is touching them.
After screaming the entire way through the test, another plebotemist brings Bubba a toy truck and Baby a beanie kangaroo. Then they brought juice and crackers. They were trying their best to get him to stop but it was no use. Once the sweat test was over, the blood work began. I had to physically restrain Bubba while they took his blood. He was kicking and screaming "Don't hurt me!"
Finally, at 11:08 we walked out of Children's Hospital, battered, bruised, hungry, and tired. The three of us looked like zombies emerging from our tombs. Bubba's arms were red, dried tears stuck to his face, and his clothes all awry. Baby had crackers around her mouth, juice stains on her shirt, and a bow that was slipping down the side of her face. I can't imagine that I looked any better because I had just restrained Bubba for an hour and took care of Baby with one hand.

I hope this week is much better than last week. We should receive results back from everyone's tests, and maybe we can get a little sleep. Christmas keeps whispering in my ear, but I'm not listening. I want to take a nap!

Science Experiment

We got the diagnosis. We read the books. We began therapies. We searched out the best DAN! doctor. We started the diet. We forced the supplements down. Why? Why did we do this? Fifteen years from now, we want to be able to tell Bubba that we did everything we could to help him. We don't want to say, "I wish we tried those B12 shots." We had hope that he might speak more or say I love you. We had hope that he might pat his sister instead of punch her or laugh at something funny. We had hope that he would recover. We had hope. Now, 6 months later, we stand here with renewed hope.

I have posed the question before about Bubba's future, with the diet, supplements, and therapies. This time, I posed it to Evander. "What do you think would happen if we stopped ALL the supplements," I questioned. He immediately became defensive, "Why would we want to do that?" See, a few days before our big Colorado Thanksgiving trip, we had forgotten a dose of B12 and saw no change in Bubba. This got me really thinking...he is doing so well now. Has his body and mind caught up? Was it just a moment in time that his body required extra nourishment or does he need it to thrive? I would absolutely not take him off the diet, because we have seen too many adverse effects from non-GFCF food, but making him take all of these supplements (+15 a day) is becoming too much for him.

After MUCH discussion, we decided to try our own little science experiment. We took nothing but Seroquel (antipsychotic), Melatonin (for sleep, a must have), and Juice Plus gummies (a whole food supplement). We carefully watched him for any regression, change in behavior, or lack of speech. What did we see? Nothing! No change! He was his usual self, if not calmer. The doctor had said that the B12 and glutathione cream could make him hyper, but we saw not change in him when we began those supplements. Now that he is off of them, however, I see a big change.

It has been almost 2 weeks since we stopped all supplements, and he is doing really well. He is talking even more (Last night I had to ask him to be quiet. I hated to do it but we were in the ER with Baby because she drank 1/2 a bottle of cough medicine. That's another story). He is also being very sweet to Baby, which I love to see. Now, they are sharing and playing together very nicely. They seem more like brother and sister than they ever have. I hope this continues. I hope he doesn't need supplements anymore. I hope he can eventually have a regular diet. I hope he can join a mainstream kindergarten. I hope he fully recovers.