Thoughtful House

*This is after the first day of school. Exhausted is an understatement.

Bubba's first week of school ended with a quick overnight stay in Austin. He had a long week, so he didn't mind an early end to the school day on Thursday or missing Friday. I picked up Bubba on Thursday, swung by for Evander, and headed to Austin.

I found the Thoughtful House Clinic while searching for "answers" on Google. I have become a professional Googler since receiving our diagnosis, so I knew there had to be a place that specialized in defeating autism. The Thoughtful House clinic is a non-profit clinic in Austin that treats children on the autism spectrum. Their goal, along with many other DAN! (Defeat Autism Now!) Doctors, is to find the chronic issues that are affecting children on the spectrum and treat them via diet, supplements, therapies, etc.

We arrived at 10:00 am and waited for 15 minutes before the doctor greeted us in the lobby. We spent two hours with this "autism specialist" (I will call him) and were inundated with information. We discussed everything from medical history to the inner workings of Bubba's mitochondria (which is, of course, out of whack). We found out that Bubba's cells are unable to produce appropriate amounts of energy because of toxin build-up (from things like mercury). We also found out that Bubba's gut contains NO good bacteria, but it is growing E Coli, staph, and yeast (all of which are obviously not good). We learned that Bubba is unable to digest certain acids and foods properly, leaving him with major vitamin deficits. If I were to type all that we learned, I would be here for a while.

The hope is, once we start to address these issues, we will see even more improvement in Bubba. We have a "course of action" now; the first step being to treat and heal his gut. Then we will begin introducing supplements which will help to build up his system. We will start treatment on Tuesday and will let you know how it goes. We were told that we should have a pretty horrible 3-4 days after beginning treatment because his body will be going through a "die-off" period (so we may see major regression, aggression, and upset stomach). I will keep you posted.

Thing 1 and Thing 2

We have officially received two opinions from two separate neurosurgeons in two separate towns. Here's the lowdown:
We saw Thing 1 on Monday at Children's Hospital in Dallas. After waiting 1 1/2 hours for him to even show up to the office, in a pediatric waiting room that did not allow food or drink, we saw him. Now, if I were to see this man in a dark alley, I would probably run the other way (even if he were wearing the same wrinkly scrubs). His hair was frightful, as if he had just woken up, towel dried his thinning wavy hair, and forgot to brush it. He had huge glasses with thick black rims that he nervously adjusted as he spoke to us, and barely looked at the Baby before rendering an opinion.
His opinion was that while he is "not going to diagnosis her with hydrocephalus" he "is not going to rule it out" (because that makes total sense). He diagnosed her with ventriculomegalie (large ventricles). He wants to see her in 3 months and do an MRI at that point.
Now, I obviously do not have a medical degree and do not have the expertise that others do, but I do have my common sense and a mother's intuition. The last of which is what prevented me from feeling better after Thing 1's non-diagnosis diagnosis.
We saw Thing 2 today at Cook Children's Hospital in Fort Worth and simply waiting was a much more pleasurable experience. The staff was friendly, and Baby ate a snack while we waited (although the wait was only 15 minutes). The nurse came in before Thing 2 (yes...Thing 1 had no nurse, just him, rushing in) to go over our information and check height, weight, and head circumference (yes...Thing 1 didn't check any of these things). When the doctor arrived, he was friendly, clean, and his hair was nice. I believe he had even brushed his teeth for us, which is always a nice touch. He shook my hand and my dad's (Grandaddy went with us today), then turned his attention to the Baby. His "bedside manner" with her was so much more gentle than Thing 1, and he knew exactly how to get her to cooperate without screaming. He examined her VERY thoroughly, looked at all the information we had given and rendered an opinion.
His opinion was that he also does not believe she has hydrocephalus, but he wants to do an MRI to be certain there is no pressure building up in the enlarged ventricles. We have an MRI scheduled for October and will go from there. Assuming nothing is wrong, he said we will probably have to have a small-scale MRI every 6 months to 1 year to ensure that everything is working as it should.
This was a huge relief to me. I just felt better that he was actually examining her and looking at her entire history. I also would rather know there is no issue, instead of worrying that one could arise at any moment. In the mean time, both doctors have told us to watch for the danger signs of hydrocephalus and rush to the ER if we notice them.
Thanks to everyone who has called to check on us and been there to support us!! While this issue is not over, at least we have some peace of mind.

Suiting Up For Battle

I have noticed, over the past few months, that each time I tell someone Bubba is autistic, they put their sad face on and tell me how sorry they are. Then they tell me one of 2 things (and I am puzzled by both).
1. It will be ok. Last I checked, God is the only one who knows what the future holds.
2. Well...he doesn't look autistic. I am not sure that autism comes with a physical description, but if it does and we don't fit it, then please let me know how we can get this changed.
When we were told about Bubba's diagnosis, we didn't get the opportunity to break out the sad faces. I had to put my big girl panties on and suit up for battle, because we were (and are) going to fight this thing. If a child is diagnosed with cancer, the parents don't wait around to see what might happen. They attack, and that is just what we are doing...attacking.
Up to this point, we have made the whole family gluten-free casein-free, been in occupational therapy for 6 months, speech therapy for 2 months, begun Under the Umbrella (school for autistic children), had 2 nutrition consults, and go to Austin on Thursday to be examined by a doctor from Thoughtful House (a clinic dedicated to helping children on the autistic spectrum).
Through all of this we have seen Bubba begin to speak in sentences, answer questions appropriately, gain 4 pounds, and have appropriate emotional responses. It has really been amazing to watch his transformation. We are continuing to fight and look for new opportunities for Bubba. We are currently looking for a music therapist and are enrolling in gymnastics (good team-like individual sport where he can put his sensory needs to good use). Bubba also starts back to school on Monday.
Evander and I could not have gotten this far without the support of our family and friends. Our parents have stepped up in ways that no one can imagine and helped us with whatever we may need. Our other family members (sisters, brothers, in-laws, niece, and aunt) have been so supportive and caring. My friend, mama bird (this is what I will call her because she always checks up on me and her last name is a bird), is always there when I need to talk, and I know I can count on her to keep the Baby while I am off with Bubba. She has been very supportive and positive through this whole experience. My other good friend, Guat mama (also previous blog-hater and current house mover), is also always there to listen to me complain if we are having a bad day. She makes me feel better by making fun of a stranger who made a ridiculous comment or laughs when my sailor's mouth gets to out of control. This would be so much harder without all of you. We do not tell you enough but...Thank you!

My Baby

*The pics are of Baby and Bubba "helping" to cook dinner.

Thank you to everyone who has had our Baby in your thoughts and prayers over the last few days. While we are hoping nothing invasive has to be done, we are still unsure and appreciate everything you all are doing.

Tonight I got the Baby out of the luke-warm bath, wrapped her up tightly in her towel, and rushed her to the bed. The bed is her transitional spot, where she drinks her milk as I (or Evander) busily put on her tiny Hanes socks with the faded pink toes and the stained bottoms (because she always likes to walk outside as soon as she wakes in the morning), her "night-night diaper", and her jammies (which tonight happens to be a NEW exquisite purple Disney Princess nightgown). Then, as she always does, she said goodnight to Bubba, Belle, and her Mermaid movie on the mantle as I whisked her down the hallway and into her candy pink room. I tucked her tightly underneath her Mermaid blanket, kissed Lambie (who is really a baby doll), Cinderella, and finally Baby as I whispered, "Night-night! I love you!"

Up until her fall, every night has transpired in exactly this order, leaving nothing to the imagination and no room for spontaneity (thanks to her Bubba). And, every night up until her fall, she has peacefully drifted off to sleep. However, tonight, like the other three nights since her fall, she began to cry as I left the room. I hear her in the monitor crying, "Mommy! Mommy! Up please Mommy!" With Bubba, this is nothing unusual and easily ignored, but with the Baby, MY baby, it is not.

As thoughts of vomit and head swelling entered my mind, I managed to keep it together for 20 minutes before racing in to find her lying on her cotton pink sheet, just as I had left her, with the exception of big alligator tears streaming down her sweet chubby cheeks. She rested her head on her mattress and stopped crying as I stroked her head. As I sat with her in silence, listening to her every breath, wondering if I should even be touching her head, a tear slowly started to fall down my own face. At that very moment (as I was thinking Get It Together Mom), the Baby reached out her tiny little hand and tightly wrapped her fingers around my pinkie. She looked right into my eyes and smiled at me, as if to say, "Don't worry! I will be OK!"

If you know me at all, you know that I worry, and to say that I am worried is an understatement. I am worried about what is to come, and I am worried about everything that is happening now. I am even worried about making myself more worried. I know...it will be alright. I know...we will make it through, and yes, I know...I am strong, but none of those things matter when your Baby is sick.

No Rest For the Worried

Well...the old saying, "If it isn't one thing, it's another" rings true at the Gregory house. Just when we get things going in the right direction with one child, something happens with the other.
I still wasn't happy with the way the Baby was acting yesterday, so I took her to our pediatrician. The pediatrician also wasn't happy with her symptoms and thought she might have a concussion, so off we went to have a head CT. Between the two children, I have seen more scans, x-rays, and tests than I ever care to, but this wasn't that bad. I did have to restrain her and they did tape her head down, but it only lasted a few minutes. I tried singing and playing peek-a-boo, but that seemed to make her crying and moving worse. How are you supposed to keep a 17 month old from moving her head? For some reason I started barking like a dog, which she thought was hysterical and started barking back at me in between chuckles.
At 5:00 we got the call from our pediatrician with the results and I knew, when she said, "Your children always keep it interesting!" that we were in for something unexpected. She went on to explain that the Baby's head, from the perspective of brain trauma and the fall, was perfectly fine. "The radiologist did, however, find something unrelated that we need to be concerned about." The baby's left and right ventricles in her brain are enlarged and dilated (The right one is larger than the left). Long story short, she has hydrocephalus (otherwise known as fluid on the brain). She could have been born with this, but no one is sure. We were told to watch her closely for any signs of head swelling, vomiting, seizures, or dizziness.
About one hour after the phone call, we noticed that the Baby's eyes and brow were swollen, her stomach was upset and we immediately panicked. May Be and boyfriend came as fast as they could to sit with Bubba while we frantically sped to the ER. Where, after four hours, they decided to let us go home and follow-up with a pediatric neurosurgeon.
We have an appointment on Monday afternoon, which also happens to be the first day that Bubba starts school. While I am not certain what the future holds for us, I am certain that this will be a long sleepless worrisome four days.
I would also like to amend my previous statement that God doesn't give you more than you can handle. If anyone talks to Him, could you please let him know that my tank is full.

Minor Head Injury

My attempt at taking a bruise photo.

My post for today was going to be about how well Bubba and Baby played with one another today, but I will start with the most recent incident of the night. About 3 hours ago, Baby was playing on the couch when she fell off and landed face first on the tile floor. Had she screamed instantly and been angry at herself for falling (as she usually is), I would not have been concerned.

That, however, did not happen. She laid in the floor for a moment with a dazed look on her face, as if to ask, "What just happened?" It was only when I ran over and scooped her up that she started to sob. If this were Bubba, I would have shrugged it off as typical, but the Baby is Miss Drama Queen and squeezes out a tear when her name is said wrong. I watched closely as an interesting bruise quickly began to take shape on her temple. It was a red and black circle, about the size of a quarter (maybe slightly larger), that was white and indented in the middle. I continued to observe over the next hour that she wasn't eating or drinking, seemed lethargic, and gag (but never vomit).

I, then, called Evander who was out to dinner. He said to do what I thought was best and let him know. Then I called my mother. I knew what my mother would say, even before I called, but I called anyway to get the affirmation I needed to get the ball rolling. She, of course, said get her to the ER, so I called May Be, what the Baby affectionately calls my niece, and she (and her boyfriend) came running over without hesitation. My excitement over her being here is for another post, but knowing that I can call her and she will drop everything for me, is invaluable.

Back to the Baby...long story short. Baby and I end up at the Acute Pediatric Clinic, where they do not calm my frazzled nerves. The doctor looks at her and says, "Well, her pupils are good." Then proceeds to tell me that, with the Baby's other symptoms, she is concerned about a major head trauma and possible delayed brain bleed. WHAT!!!??? Her advice...take her home and watch her very closely. Wake her every 2 hours and if symptoms continue or worsen take her to the ER. She seemed to be perking up before bed, but I plan on sleeping outside her door tonight just in case.

On a different and lighter note, Bubba and Baby were playing exceptionally well together today. They were making messes, pretending to be in a rain storm, and taking care of babies. It was so nice to see that they are starting to play together.

What Did You Say?

Over the past 12 hours, Bubba has done some remarkable and exciting things. While they might not be exciting to everyone, we find them an amazing accomplishment that would have never taken place a few months ago.

I will start with yesterday on our dog walk (although as you can see from the picture, she rides with everyone else). Bubba noticed that a construction worker had spray painted on the sidewalk and grass. He said, "Oh no Mommy. That man painted grass. NO NO MAN!! NO PAINT GRASS!!" I was utterly stunned. Not only did Bubba notice that the grass was different from usual, he put the entire sequence of events together. We did not see the man paint the grass, but he saw the man walking with the can of paint. Two months ago, Bubba would not have even noticed the grass, period. The other fantastic thing was, you guessed it, he said a complete sentence!!

While this little phenomenon was enough of a pat on the back for everyone, it continued later that night. As Evander was reading Bubba and the Baby a book, Bubba began reciting the words before they could be read. Amazing! Now, I obviously know that he wasn't reading, but he had been paying attention all those times I read it before and was actually showing it now (not to mention he sat while several books were read).

Bubba and I awoke before the roosters and took Belle for her morning outing. As we were waiting for her to do her thing, I said, "I'm chilly!" and Bubba responded, "Mommy, need a coat?"

What did he say? Did he ask if I needed a coat? REALLY?? He went from not knowing what is hot and what is cold to knowing all of a sudden what chilly means and that I might need a coat!! I was floored and wanted to tell someone immediately, but at 5:40 am there is no one awake but myself, the dog, and my little Guatling prince.

It just goes to show that, with a little bad over the last few days, comes a lot of good. These might not be exciting to some, but they are miracles to me. God doesn't give me more than I can handle, but he sure does know how to make me squirm.