This Path

The news that I was pregnant with Baby shocked and overwhelmed Evander and I. How could we possibly be pregnant when our son was about to come home? We had been through fertility treatments and miscarriages and decided that wasn't the road we wanted to travel. Life is a journey, afterall, and there are going to be decisions to make. Which direction do you turn?

We quickly found out that, while we may turn one direction, God wants us to walk another path. In all honesty, I wasn't initially happy with His decision. I had come to terms with the fact that I would not be able to carry a child, and I was ok with that. We were about to welcome our son into our home, and this pregnancy could mess things up. I felt guilty for adopting a child when I could have a biological child, and I felt guilty for having a biological child when I was adopting. Would I give more attention to one over the other, or would I love one more? Obviously God knew more than I did at the time (as is always the case), and we were blessed with two children, 13 months apart (Bubba was only home 7 months before Baby arrived).

Now, I cannot imagine my life without our beautiful princess. She is easy going and carefree. She lights up the room with her smiles and loves almost everyone she meets. She is intelligent and fascinating. When you hear her laugh, you can't help but crack a smile. She can pooch out her lips, cock her hip to one side, and swing her arm like the best diva who ever lived. She doesn't take anything from anyone except her Bubba, and she rarely has a bad day.

She is this amazing ball of energy who forces Bubba to come out of his comfort zone just a little more each day. She grabs his hand and insists that he play with her. Even though she is only 18 months old, she reminds him to say thank you and excuse me. She won't let him have something until he uses his words, but she also knows when to give in. She loves him no matter how many punches or pushes she receives. She tells him night-night and I love you every night, whether he acknowledges her or not.

Baby is this phenomenal little person that I could not imagine my life without. She brings happiness into my heart and makes the bad days full of light. I credit her, as much as the therapies and supplements, with Bubba's recovery. If it weren't for her, he wouldn't have a forever friend, who will always be there to support him. Both of these children were meant to be in our lives, and there isn't a day that goes by that I am not thankful for them. I am so thankful for this path, this life, this family!

Bubba mini-update: Bubba is now counting to 10 on a regular basis and knows his colors. This morning he pulled his pants down and said "I need my B12!" referring to his injection. He is regularly communicating in complete sentences and took his own shirt off for his bath last night. This morning he dressed himself (except socks) completely. Next week he will start neurotypical preschool (normal preschool) and will be evaluated for PPCD (public preschool for children with disabilities) on Nov 4.

Long Term

Ever since we received Bubba's diagnosis, Evander and I have pondered the long-term implications. I, myself, have often wondered if he will have a best friend, a sleepover, or a birthday invitation (that does not involve parents' friends). Will he play soccer, go to college, or have a first kiss? Most parents do not even think of these questions, because it is assumed, just as I assume these things for Baby, that each one will happen. I, however, cannot assume these things for Bubba, because only time can answer these questions, and the more time that goes by, the more I begin to wonder.

I have now started to question the long-term medical implications. In my mind I see Bubba, age 18, in his dorm room with a Dr. Pepper in hand. He has on raggedy jeans that he hasn't washed in weeks and a green worn t-shirt with the outline of a white car on it. He is barefoot, lying on his bed, watching tv. Bubba desperately needs to study, but he is exhausted from the sedating-effects of the Seroquel. His roommate has gone to McDonald's, but didn't ask if he wanted anything because his special diet makes ordering way to complicated. The night before he went to a keg party but couldn't drink because the only GFCF beer is Redbridge, and it is NEVER in keg form. Suddenly his cell begins to vibrate on the desk. He doesn't want to answer because it's his mother, but he does anyway. "Did you take ALL 12 supplements yesterday? And your glutathione cream? And your B12 injection?" Terribly annoyed he answers,"Yeeesss!"

This is not what I want for my son, but this could be the reality (without the nagging mother of course). We do not know if he will need to stay on his GFCF diet forever or if he will need the supplements to sustain himself. We hope to have him off the Seroquel, but after a trial run off of it, found that he just can't function without it right now. He constantly hears me saying, "You can't eat that! It will make you sick." or "You have to take this because it helps you talk and think clearly." He is taking so many supplements, but he needs them. Right now we just don't know!

All of the unknowns have lead me to a conclusion. I can not worry about the long-term. I cannot concern myself with college or prom or sleepovers. I cannot worry about driving or friends or GFCF beer. That is why my "long-term" is now kindergarten, and even that is 2 years away. We have to focus on the here and now and on getting him better. We have to focus on getting him into a mainstream kindergarten and all that entails. I just want to see to it that Bubba is happy!

Wet and Wild at the ENT

"I've gotta go potty." Those four words have become a staple in our house. We hear them as often as hello and good-bye, but they almost always come at a bad time. Those words also do not necessarily indicate the actual need to use the bathroom. They could mean that Bubba just wants to stretch his legs or get out of the car. They could mean I'm not eating another bite or I refuse to sit in timeout, but no matter what the true meaning, I kick myself into high gear when I hear them. There is, after all, a chance that those four words actually mean "I've gotta go potty".

Well...I heard those words yesterday as we sat in the waiting room for Bubba's ENT appointment and wanted to die. Just moments before we had run down the hallways and through the elevators trying to find the ENT's new office. Finally we arrived in the waiting room, at exactly the right time, for the receptionist to hand Bubba a box (what kind of person does this) of stickers for him to pick from. A small riot ensued between Baby and Bubba before I could wrestle the box from the two of them, throw 2 stickers to the ground, gently place the box back on the receptionist's desk, and politely thank her for that brief moment of insanity. I turned, grabbed my two monkey's wrists, and went to sit down, as the receptionist sat in her chair, wide-eyed and stunned.

We finally sat down when out of nowhere came, "I've gotta go potty". As I looked up at him, I immediately knew it was too late. He had stopped banging on the metal garbage can and was holding his pants. I watched as his jeans began to turn dark blue in the inseam. Then, I looked at the sky, screamed inside, and approached the now-recovering receptionist. "Um, we have a little issue. We need to use the restroom."

"Well...you are next in line." That rules out running for the car, where his extra clothes were. I knew if we lost our place in line, we would be there all day, so I had to make it quick. We ran to the restroom, where I threw his underwear in the garbage and blotted his jeans with paper towels. It was all I could do at the moment. We just had to make it to the back and then I could think. We ran back to the waiting room, as I announced our return.

Just as I sat back down, Baby looked up at me and said, "I poo-pooed." Seriously!! So, I scooped them back up, careful not to touch the pee pants and went back to the receptionist. "I need to change her diaper but we will be right back."

"Ma'am, they are about to call you," she explained. "I understand, but she has poop all over her, so tell them I'll be right back."

I cleaned her up and tried to keep Bubba from sticking his head in the toilet as quickly as possible. We were just about to leave the restroom when Baby thrust Lambie at me and said "Eewww!" Somehow, she had gotten caught in the aftermath and needed an emergency bath, so I hurriedly bathed the baby doll in the sink before running back out to the waiting room. We emerged only for the receptionist to say, "They just called your name." She could tell, however, that this might be a bad time to put me at the back of the line, so we got called back.

Once in the back, I was able to appropriately address Bubba's situation before the ENT entered our room. She took one look at Bubba and said "Come with me". That is never good! She took us to a room where she irrigated and suctioned out his nose while I physically restrained him, all while Milo and Otis was playing in the background. She then wrote us a prescription and scheduled a head CT with sedation.

We emerged from the ENT looking like we had been ravaged by a tornado. Bubba was wearing a t-shirt and a diaper (his jeans, socks, and shoes were soaked with pee) with tears running down his face, screaming "Kitty cat! Kitty cat!" He was terribly worried about Milo. Baby was at my side with snot running out of her nose, a horrified look on her face (because she had just witnessed Bubba being held down and suctioned out), carrying a wet baby doll. I couldn't even begin to tell you what I looked like, but I bet it wasn't pretty. All in all, I suppose it was just another visit to the doctor!

Yuck!

"Do I smell like poo? Smell my hands! Do they smell like poo?" In a typical house, the wife might say "What are you talking about?" or "Gross!!", but this is not a typical house. What did I do? I smelled his hands, confirmed the smell, and went to investigate.
Each night, before we go to bed, Evander and I make sure the doors are locked, refill milk cups, and close the blinds. Evander opens Bubba's door and goes in to check on Baby. He covers her up and takes her milk cup. (Don't worry. Yes...she does go to bed with a milk cup but she never drinks it. She just thinks she needs it in bed with her.) On this night (Thursday), however, when he was feeling his way around her pink cotton sheet and fuzzy mermaid blankie for her cup, he happened upon a foreign texture and immediately ran from the room. This is when he came to me and we both went back in. Just as I turned the corner I smelled all the evidence I needed.
I went out to prepare my work station. I set out wipes, a diaper, and balmex and went back for my project. Despite being covered in poo, she was sound asleep, so I carefully scooped her up and carried her to the couch. Trying desperately not to wake her, I delicately changed her diaper, as if I were handling an egg baby from home-ec class. She was back in bed in no time and back to sleep in an instant.
When I awoke the next morning, there was no need to wonder what kind of day I would be having. I knew one baby and possibly two would be sick, and we were going nowhere (except Bubba's parent-teacher conference). We spent the day in our jammies, watching Playhouse Disney, and eating crackers, bananas, and applesauce. Both kids were complaining of tummy aches, but Baby was still on the go. I knew Bubba must be feeling bad because he sat on the couch most of the day. Around two o'clock he began vomiting, which was a nice addition to the day.
In the end, Baby began to feel much better and was ready to go by dinner time. She changed her clothes (to a purple-silky Cinderella nightgown), played outside, and ate her noodles for dinner. Bubba, however, began to run a 103 fever, and his face started to swell, so he was off to the urgent care. He came home with an antibiotic, a middle ear infection, and a stomach virus.
Everyone is doing much better today, and there are no weird smells yet. Evander did wash his hands carefully and will now be a little more cautious when looking for that milk cup.

Chaos

Thursday morning I awoke to a fairly busy day, which was good, because I knew it would keep my mind off of the events to come. My mother was having outpatient surgery to have her gallbladder removed, and Baby had her brain and lumbar MRI coming up on Friday. Little did I know, however, that these "events" were just the tip of the ice berg.

By 2 o'clock I began to worry because I had no heard from my dad, and I had a feeling something was wrong. At that very moment, my sister called to tell me that Momma was out of surgery and doing fine. For some reason, though, I could not shake the worry away. A little later, I received a call that my mom was in ICU and needed blood.

After many calls and a bad nights sleep, Evander and I arose at 4:00 am to get ready for another arduous day. We had to have Baby at Cook Children's Hospital by 6:00, which meant we had to leave the house by 4:45. We scurried around the house stuffing backpacks full of crayons, books, snacks, and toys. We made lunches and hurriedly packed the car. The kids were whisked from their warm, cozy beds and thrown in the chilly car, and we were on our way.

Baby had her blood pressure and temperature taken, had a vitamin taped to her butt (to mark the spot of her dimple), her head measured, and changed into a baby hospital gown. She hadn't eaten since the night before, but she never complained. When it was time for her to be sedated the anesthesiologist and nurse laid her own the bed and placed a mask over her mouth. Baby just laid peacefully, holding onto her Lambie with one hand and my fingers with the other. She was so calm and peaceful, while I was fighting back tears. I was thankful to be there to assure her safety and comfort, but I was also terrified and extremely uncomfortable at the same time. As she began to drift off, the Dr. warned me that she might look funny and she did. Her breathing became rapid and her chest began to quiver. Her eyes were rolling around in her head. I tried not to look horrified as she tried to keep her stare on me. Soon it was over, and she was asleep.

What seemed like hours went by, until I was called to come back and see her. When I rounded the corner I heard her screaming "Mommy". It was not a sad scream or a scared scream, but the scream of a pissed off little girl. It was a scream that said "Where the hell have you been and what did they do to me?" I picked her up as she fought, kicking, hitting, and crying. She was demanding that her IV be removed but that could not happen until she had something to drink. Eventually the IV was removed and the kind nurse taped little cotton balls to her hands. This ever so angry Baby quickly tore them off and threw the wads of tape to the floor, followed by her sippy cup, Popsicle, and bottle.

Once she had calmed down and changed clothes, we were off to the neurosurgeon's office. I was hoping for good news but feeling like we might not receive it. He began with the brain. The MRI showed large ventricles (which is why we were there), and the large ventricles appeared to be the same size as they were in the head CT, which is good. The problem is that, since we do not know what they were like before the head CT, he does not know if they are growing or just large. Because of this, he will continue to monitor them to see if they get larger from this point.

Now to the back, or sacral dimple. Everyone has a portion of the spine called the phylum, which is the "end" of the spine. A "normal" phylum is very thin and allows the spinal cord to extend beyond it and onto the remainder of the back. Baby's phylum is fatty and larger (I have decided that everything about her is just bigger) than average. This indicates a tethered, or tangled, spinal cord and will need to be repaired through surgery. If it is not repaired, as Baby grows, the spinal cord could tighten and she could lose "ability" in her legs and bladder (permanently).

With that lovely information in tow, Evander and I packed up our stuff and our children and headed out to the car to receive another update on my mom.

On the way home we discussed when Baby should have surgery and if I should go home to help my momma. We were interchanging topics as if we were discussing what to have for dinner.

I said, "She sounds like she is doing good, so maybe I shouldn't go home. What do you think?"

"I think we should have the surgery after the holidays," remarked Evander.

"I agree. I don't want her in pain during Christmas. That wouldn't be fair. Maybe I should go home."

"That's up to you!"

We went on like this all afternoon until we received a call from the neurosurgeon. Evidently, when he gave us the news, he had not received the "official report" from the radiologist. The radiologist disagrees with the neurosurgeon. He does not believe that the phylum is very fatty, but our neurosurgeon is sticking to his guns. Where does this leave Baby? We are to watch her for signs of trouble (leg or back pain, loss of bladder control, loss of leg ability, ankle turning or more severe pigeon-toes), while we are also watching for signs of possible hydrocephalus (sleepiness, head growth, vomiting, "out of it", trouble walking). He wants to follow-up in 6 months.

Evander and I were, first excited and then angry with the new information. Did someone make a mistake? Who should we believe? Where do we go from here?

I'll tell you where I went. On Saturday morning I got a call from my mom asking me to come home (in not so many words). I ran home and booked the next flight out, which was 1 1/2 hours from then. I threw some things in a bag and headed to the airport. When I arrived at the hospital, I knew my mom wasn't doing well. Long story short, she required 2 units of blood and had fluid in her lungs. She was unable to breathe without oxygen and could not eat. I stayed with her until Sunday night, when my aunt came in to take my place.

Early Monday morning, I flew out, and Evander and the kids picked me up at the airport. We were headed to Austin to see our DAN! doctor. They were very impressed and excited with Bubba's progress and gave us more to think about. The doctor really wants to chelate, which is metal detoxification, but I have my reservations. Evander and I will have to do lots more research before we agree to this treatment.

I know this post is kindof all over the place, but so much has gone on in the last few days. My mother is doing well at home now, and Bubba is back at school. He did not qualify for his physical therapy eval on Tuesday, but I think that is good news. He is doing well at feeding therapy, too. Baby is just now getting back into her groove, and Evander is back at work. There is always chaos, but it has never been like this!

Do I Go?

Do I go back or not? This question has been floating around in my already occupied mind since last year at this time. I have been contemplating going back to work, back to teaching, but I don't know if I can. I want to leave my crazy life for 8 hours a day and just have a little time to myself, but I'm not sure I can let go of everything that entails.
Weekly GFCF menus, therapy 4 times a week, special preschool, countless supplements, and tantrum control is what my day currently consists of. I count words instead of listening to their meaning. I police food to make sure a goldfish doesn't end up in the wrong hands, and I count protein like a bank teller closing out her drawer. I hide supplements in juice and sit in waiting rooms so Bubba can attend his weekly therapies. Often, while I am sitting, I think of what I could be doing. I could be shaping young minds or grading papers. I could be watching recess or policing the lunchroom. I miss what I do, and I would love to forget my day as it is now.
What is holding me back? The very reasons I want to go to work are the very things holding me back. Our family has had to make sacrifices in order for Bubba to recover, and he is. He is doing so well. What if it stops? What if he regresses? He enjoys his little routine, and I am a part of that. He has come to expect me on the other side of the therapy door saying "Great job!" He has come to understand that the supplements make him better and wheat/dairy makes him sick. He knows I count his words and then respond, but he doesn't mind. In fact, I think he likes the extra attention. He knows I need him to "take a breath" when he gets upset, and he knows I understand him when no one else does. We have all put so much into his recovery. I would hate to be the one to derail the train.
So, for now, I continue to imagine what I may do come January. Do I fill out an application or do I stay at home for one more year? Only time will tell.

Good Things Do Happen

"Bad things happen in threes." That is an old saying that I have heard numerous times. While I am unsure of its origin or basis, I do know that many people speak of it as the truth. Well...I am here to change that. I would like to officially say that GOOD things happen in threes, and I have proof.
Our day began as usual, the frantic running around, making lunch, finding clothes to wear out of the pile by the TV, and cooking breakfast while listening to Playhouse Disney in the background. Evander scarfed down his yogurt, while I filled out paperwork for the children's first dental appointment (yes...I am insane for taking on the dentist), and was out the door with briefcase in hand. Baby was chasing after the dog, and Bubba was on the other side of the counter from me. After looking up to make sure everyone was still alive, I dove back into my paperwork, and that is when it happened. From the other side of the counter, a little voice casually said "I love you Mommy." I put my pen down, looked down at the big brown eyes peering at me from over the counter, just as my heart stopped. Maybe it didn't stop, but it definitely skipped a few beats. I tried to recover quickly and casually responded, "I love you too", but my stomach was turning flips, and I felt lightheaded and excited and shocked all at once. He went on about his business of torturing Baby but I did not rebound that quickly. My son had just communicated a feeling for the first time, and I had the pleasure of it being directed to me. Don't get me wrong; he has said I love you before but only after one of us has said "Say I love you." This statement was totally out of the blue and unprovoked and AMAZING! I hurriedly called Evander and went about my day.
Soon we found ourselves waiting impatiently in the dentist's waiting room. I had explained that the dentist wanted to check their teeth, and I also threw in that there would be NO toy if there was crying. "The dentist doesn't like crying," I had warned. As we settled into our little cleaning room, the hygienist said "So Bubba, why don't you go first since you are the big brother?" I was expecting whining and hesitation, but what did he do? Bubba jumped right up in the chair, and, with a little encouragement, laid down to have his teeth brushed with the real toothbrush (the one they use on us). She was also able to floss and count his teeth with no trouble at all. This is from the same child who, at one time, would not even open his mouth to let a toothbrush in. I was SO proud of him, and the day wasn't over.
Our final stop of the day was speech therapy. The therapist came to get him, but he didn't want to go. I thought we were going to have a tantrum on our hands, but, with some persuasion, he decided to go back for therapy. Before long Bubba and the speech therapist emerged from the door and she knealed in front of me to give me the low-down. Suddenly, I found my heart stopping for the second time in one day. The speech therapist was telling me that Bubba just met ALL of his speech goals, AND he seems to be at his appropriate age level for speech. I could not believe what she was saying, and at the same time I was ecstatic! She went on to ask if I had anything that I would like her to work on because he is doing so well, she doesn't know what else to work on. WOW!
I know that he probably shouldn't surprise me like he continues to do, but he has just come so far. It was only July when he was using a one-word screaming combo to communicate, and, as of March, he was still unable to brush his teeth. Now he is speaking in sentences (he said a 7 word sentence today) and brushing his teeth twice a day. Many people question our methods, but these three exceptionally good events prove that we are moving in the right direction. Who needs old sayings? GOOD things can happen in threes too!