Stomach update

Last Monday, we took Little Bug to a GI doctor to follow up on the wizard’s suspicion that he wasn’t actually emptying his bowels when going to the bathroom.  He took an X-ray (which took two people to hold Little Bug down for) and confirm that his entire large intestine was filled with crap.  He gave us instructions to have Little Bug drink 3 hours of magnesium citrate mixed with soda or juice twice a day.

If you don’t know, magnesium citrate is a saline based laxative that comes in lemon lime flavor.  It is beyond disgusting.  Little Bug did a great job drinking the first one; however the second dose took three hours to get into him.  Unfortunately, none of this worked.  We then had to try another laxative the next day- which worked.

Little Bug seem to take it in stride.  He was pretty stoked about getting to eat as many popsicles as he could and drinking all the soda he could get his tiny hands on.  He is slightly suspicious of us.  Prior to drinking anything we give him, he wants us to try it.  He knows that we the laxatives in his drinks to get him to take it and also knows that we won’t drink them if they have his medicine in them.  This kid is too smart sometimes.

The doctor didn’t give us any real idea of how we can prevent this- other than daily laxatives.  While he wants Little Bug to sit on the toilet three times a day, he did say that it could take anywhere from 6 to 12 months in order for the large intestine to shrink back to the normal size and potty training in that time may not go well as there is a lack of body awareness there due to the size of the large intestine.

ASD update

We took Little Bug for his annual review with the Wizard and as per usual, it wasn’t what we expected. The last time we went to see the wizard, all we got was a lecture about our sleeping arrangements (co-sleeping) and not to even consider potty training him until he was 4 or 5.

This time, the wizard told us that we were doing the right thing with the co-sleeping. He also felt that we were right to allow Little Bug to potty train in his own way, however was concerned about Little Bug’s bowel movements.

The wizard seemed less positive on things. Last time, the wizard gave us hope that things were going well and we were doing right. This time, the wizard gave us concerns, worries, and fear.

Going to see the wizard isn’t ever what you expect it to be or what others tell you it will be. Seeing our wizard is usually a mix between frustration and humor. The wizard wanted to evaluate Little Bug’s cognitive skills as we had told him that Little Bug could count beyond 20, count a group of objects without counting aloud, knew his colors, alphabet, and could spell his name.

Of course, none of these things happened with the wizard. When asked to name colors, he named shapes. When asked to count, he refused. When asked how to spell his name, he said, “I no know- too hard!”

Nick and I could only laugh. Once again, we look like pathological liars. We joke that Little Bug is hell bent on having therapy until he is 30. The SLP at his school and everyone who knows Little Bug has seen his language grow to a consistent 5 words (at least) per sentence and now includes self correcting. When he goes to speech, he will only give one word answers- even about his beloved sharks.

Potty Training Update

It looks like we are going to be changing diapers for a considerable time longer. We took Little Bug to his ASD specialist (a separate update in itself) and The Wizard is concerned that the reason Little Bug isn’t acknowledging that he has gone poop or has to go, is because he is blocked up with poop. There is a special name for this condition, but basically it means the child goes back and forth from constipation to diarrhea, however they are never fully emptying their bowels.
Nick and I was obviously overwhelmed when the doctor began to talk about the surgery that could fix this problem and what tests- x-rays and ultra sounds- would be needed. We were also concerned when the wizard told us that a cause of this could be lack of nutrition. We could only shake our heads along with the wizard when he said that unfortunately a nutritionist would be involved.

Nothing personal against nutritionist, however when you have a child with restrictive requirements about food, nutrition is the tip of the ice berg. Simply eating some days are a battlefield. While Little Bug has gotten more flexible in many ways, food isn’t one of them. He now will only eat plain chicken- there can’t be salt, pepper, or discoloration or grill lines from cooking. If there is any of the above, he will take the time to pick of the marks with grill lines or will rub the chicken on his pants to get the seasoning off. He refuses milk at this point- including chocolate milk. He only wants juice or water. He has begun to become a carb junky- whole wheat, raw pasta, and handfuls of just plain flour are the items he seeks. We have to lock up our flour as he has been sneaking it. Behaviors like these don’t leave much room for nutrition. A good eating day at our house is when he doesn’t find a way to get to the flour while Nick or I are going to the bathroom and he has eaten something other than chicken. At this point, getting 1 serving of fruits or vegetables (that isn’t plain lettuce) is a miracle

Sleep issues

Not sure if I shared, but when we last saw the wizard (as we like to call Little Bug's neurologist), he diagnosed Little Bug with Sleep Distrubances NOS (Not Otherwise Specified). Basically, this documents that Little Bug still doesn't sleep through the night. That he still has an incredibly difficult time falling asleep.

We have a new wrinkle- sleep walking. He has begun to do things at night that he would *never* normally do. I know, you say, you can't know that. I know that he would normally not trash the house. Last week, I woke up to get ready for work and at first thought we had been burglarized. There was stuff everywhere. Every cupboard in the kitchen was open. Any stitch of fabric in the kitchen and bathroom had been tossed onto the floor. All the coasters and mug rugs the Hama makes were tossed all over the living room.

Last night, Nick and I found out that he has been sneaking food. I had been finding wrappers during the last week and thought that Nick was having a late night snack and just didn't see them. Nope, they were Little Bug. Which explains why when he wakes up at times his face is sticky.

I have found dried beans and spaghetti noodles on the floor. Again, I thought Nick was looking for a snack and didn't see that he had made a mess. But, no it wasn't Nick.

At this point, for his safety, we are going to have to consider all options. He already sleeps with us- heaven help us if he sleeps in his own bed. I worry that he could hurt himself or choke with his midnight eating. As he gets bigger, I worry that he will be able to get out of the house easier- we already have special locks installed and are now figuring out how to adjust the door alarm we bought.

I just want him to be able to sleep. To not wake up looking like he didn't sleep at all. He often carries steamer trunks under his eyes.

Captian, MOOD SWINGS AHEAD!

So before I go into the details of what has been this morning, I want to first point out the many steps forward Little Bug has taken this weekend:

1. He wanted to play with other children at the beach. This is big for him. Normally, he tries to jack their toys and run, leaving them with their mouths hanging open. Not on Saturday. He was all about being close to them and wanting to join in. While he didn't make eye contact or talk to them, the fact that he was in very close proximity- 1 foot- and stayed there peacefully is huge. GOOD JOB BUG!
2. HOUSTON, We have pretend play. I repeat, pretend play. So in case you are unfamiliar with ASD, a lot of kiddos on the spectrum have a really hard time with pretend as it deals with intangible and non literal ideas. But, Little Bug did it. He found a chunk of wood and made it swim in the ocean and called it fish. This is big for him. Normally, if it wasn't an actual fish- toy or otherwise, it would not have been made to swim- only chucked back to the waves to once again be regurgitated to the shore.
3. He shared. We went to a good friend's house this weekend. Now, we have been there more than 6 times for at least 4 hours each time, but each time he acts as though he has never been there before and has never seen these people. This time, after warming up, which didn't take as long as usual, he shared with them. He let them touch him- huge, a lot of people would get in serious trouble for touching him. He let them tickle him. This is an amazing accomplishment for him. It also speaks volume about this family- he knows they care and can feel it.

(NOTE: RANT BEGINS NOW, so for the squeamish, please run.)

Now, I received an email from our FRC this morning regarding the wizard's wonderful diagnostic screw up. She let me know that she received the letter from him, but Little Bug's diagnosis needs to be on paper before our meeting in less than 12 hours with the Birth to Three center. Birth to Three has a very intensive Autism program, but children *must* be diagnosed prior to being recommended.

So, what I am being told is: THE WIZARD'S FRACKING MISTAKE MAY COST MY CHILD'S THERAPY TO BE DELAYED. *queue ominous, you better fracking run music* The wizard and his staff got off light when DN called. DN is my better, more patient, and less quick to anger half. He is also much nicer than I am. Ever watched National Geographic specials that include mama animals- elephants, hippos, tigers- and their babies? Ever watch what happens when the baby is threatened? Lets just say this- a mama tiger ain't got shit on me.

In exactly 1 hour and 31 minutes, I will be talking to the wizard. We will be picking up Little Bug's diagnosis in hand today so that we can take it to the center today. I will not settle for less as no child deserves less than the bare fracking minimum.

On the upside, we have been invited to attend a weekend class for therapists and parents of children with Sensory Integration Disorder. The city is going to pay for it. I simply have to work out the work schedule and Little Bug sitting schedule with DN and MA.

Hopefully, we will have a positive outcome from today's meeting with Birth to Three. Stay tuned.