Our Happy Baby Boy!!!

The above video is Jet's progress from being on Gluten Free for around 4 - 5 months. I think that you'll find in the video that Jet has definitely made progress. It would be beneficial to me if you notice anything that has changed in Jet in comparing the first video to this one, please make a comment on it. I would greatly appreciate it.

I also hope that you can see what an amazingly sweet boy we have been blessed with. His spirit is happy and very joyful. His smile holds the power to light up your day. We are so very proud to call him our son.

Jet had Speech Therapy today. He received private Speech Therapy twice a week and he also receives it at school once a week. His speech therapist was so proud of him today. She's very impressed with his focusing skills and his nonverbal imitation are improving greatly.

We ate at Ocean China tonight and he actually did not make a huge mess. In fact, there was very little on the floor. Which is a HUGE improvement even from last time we ate there, which was probably around a month ago. Rice can be very messy. For some reason, he loves putting food in his hair. I'm not sure why. It's funny and annoying at the same time.

We went to Soonerpark today and he did great playing on the playground and walking around. We also went to the Duck Pond. The Geese totally freaked him out. He did not care for them at all. He did enjoy playing in the pond with sticks and throwing rocks in. Jet has started monkey see monkey do with his older brother especially. Will found a big stick and so Jet had to find a big stick. Will stuck it in the water and Jet had to stick his in the water. His little sister, Anabella, went exploring through the woods and Jet thought that was a pretty good idea and he followed her. The imitation play is a precursor to verbal speech, so it's a great sign.

Here we are at the Duck Pond. Obviously, he is still having oral motor weakness. 

One of the things that both of his therapist are working hard on is getting him to close his mouth. He is making progress. Every now and then, you'll catch him with his mouth closed. At this point that is definitely the exception, not the rule.

On Wednesday night, we went to church. Jet ran from the Van all the way to the church door without falling down. I'm not sure of the exact distance - but trust me, this was a huge accomplishment for Jet.

Something else that I have noticed recently that if you say, "Jet look at that!" while pointing at something. He will look immediately. That is a new skill for him.

I'm also slightly concerned about his still very bloated tummy. I'm not sure at this point what is causing it - so I am considering switching him to Rice Milk (he's on soy milk now). If anyone has any feedback on what might be causing that, I'm all ears.

In March we'll have a better idea on what might be causing the delays. If the genetics tests are all negative, I'm considering going to a DAN (defeat autism now) doctor. There is one in Tulsa and the idea is very intriguing. Jet has not been diagnosed with autism and I don't think that he has it - his social skills are not delayed. In fact his Development Pediatrician - said that if he's on the spectrum at all, it is very very low. However, he does have a lot of the same qualities as someone does with autism. I spoke with a mom recently who has had GREAT success with this approach and it is something that I am seriously considering. From what I understand, DAN deals a lot with nutrition and supplements. 

We are also considering "Thoughful House for Children" in Austin Texas. It's a state-of-the-art facility that diagnoses and treats kids with "special needs" (autism, adhd, pdd, and delayed development). It takes a long time to be seen at "Thoughtful House", so I might just go ahead and make an appt. I'm sure it will be after March before we could get in. The same mom I spoke with earlier this week said that "Thoughtful House" was a saving grace for them - something they wish they would have known about earlier. I'll keep you posted on what decisions Jared and I make regarding this.

As always, Thank you for reading and Walking with us through this Journey.

Geneticist.

We saw a geneticist yesterday. Overall, it was a good appt. Nothing spectacular happened. The Doctor can't put his finger immediately on what would be causing the delay. Jet is a very unique fellow.
He took a urine sample and 4 viles of blood. It will take him 2 months to go through all the testing that he is wanting to do on Jet. If something is discovered, we're hoping that it will be something small and treatable.
I'll keep you updated on that appt when the time comes. We also have an appt with his developmental pediatrician coming up next week and an appt with a new GI coming up in April. His little sister also has an appt with a pediatric surgeon in a couple of weeks - because she obviously felt like she needed some doctor intervention as well. :)
Hopefully, amidst all of these doctors appts some light might be shed on our sweet little Jet.

Frustration!

Finally.... An update on Gluten-Free with Jet. A lot has happened in the past couple of months. I won't bore you with the nitty gritty details, I'll just jump right into the meat of the story.
Our goal in going Gluten Free was that Jet would start functioning at a level closer to a 3-year-old. We have absolutely seen improvement in him, no doubt about it. However, the change has not been huge. My sister tells me it'll take around 6 months and we're somewhere around 5 months. If we see that huge of a jump within 1 month, it will be a miracle.
So has the Gluten Free caused the improvements or has the intense therapies and preschool caused the improvements? (Jet got accepted into the 3-year-old program at Ranch Heights - 4 days a week.)
Honestly, I don't know. I would like to think that the Gluten Free has helped.
So you ask, "Why don't you just take him off the Gluten Free?".
Well, here's the reason.
Jet has ran into a couple of instances with gluten in the past couple of months. And by that I mean, 1 small graham, 1 cracker, 1 pretzel... Nothing that has been a huge amount of gluten (that I know of).
All of these small instances have led Jet to be in SEVERE pain. Several hours after ingesting the gluten he'll start out with "amazing" gas, but by hour 24 he is in unbearable pain. Literally, no Exaggeration, he'll scream and hold his belly ALL night. He grinds his teeth and tosses back and forth all night long. He might fall asleep for 30 minutes and then he'll wake up and scream again for around an hour until he passes out for another 30 minutes. And to top it all off, this lasts for around 7 to 10 days!!!! Also, during this time his poop becomes very "sandy". I know that sounds weird but it literally looks like he's eaten sand. Jet is our happy, easy going baby that loves his sleep. He ONLY acts like this after he's been exposed to gluten.
We did discover after the pretzel incident that pepto does wonderful things for him. It's obvious that he's still in pain, but it does make it bearable.
Before starting the gluten free diet I contacted his GI and his pediatrician. Both thought that it would be worth a try and definitely couldn't hurt anything. His GI did tell me that in order to do a blood test to test for celiac he would have to go back on gluten for 6 weeks.
Because of Jet's horrible reaction to gluten, I decided that it was time to do a biopsy of his upper intestine. This type of test is a more accurate test for children than a blood test.
I called his GI to set up the appt and they informed me that they never suggest that people go gluten free before being tested for celiac because they have to be on gluten for at least 6 weeks before ANY kind of testing can be done. This was the same person that told me to go Gluten Free with Jet. I very calmly exclaimed... "BUT YOU DID SUGGEST THAT WE GO GLUTEN FREE AND NOW WHAT AM I SUPPOSE TO DO?" She didn't respond.
I melted myself into a little puddle after that phone conversation. In order for Jet to be officially diagnosed with Celiac - I have to quite literally torture him.
Nope - not this mama. I WILL NOT do that to my baby!!
So now we wait. We have an appt in April to meet with what will hopefully be a more competent GI.
Here are things that are positive that I know came from Jet going Gluten Free. He doesn't spit up at all anymore. His acid reflux is all but gone. We haven't tried reintroducing cow milk - but he can drink Sprite, Juice, and Kool-Aid. Right after going Gluten Free he grew a good inch if not more. His belly isn't near as bloated as it was.
We have discovered that everything has gluten in it.... Detergent, Shampoos, Lotions, Sun Screen, EVERYTHING!!!! I read the labels on everything now. So that has been a challenge. A couple of weeks ago we found out that the pepper that we had been using had gluten in it - Crazy!!
At this point I feel comfortable in saying this with confidence - Jet has an obvious Gluten Intolerance, maybe even Celiac. What I can't say with confidence is - The Gluten Intolerance has caused his global delay. At this point, time will only tell.
I'll be better about updating everyone - I promise.