Join me in Prayer.

 "Our Smiley Baby Boy"

"Talking to Daddy with those Hands and Eyes"

We took these pictures tonight as we were enjoying Anabella's "new" room. She now has a big girl bed and it is heart breaking that she is growing up so fast.

We are going to start pushing Jet really hard to start closing his mouth and keeping his tongue in. His receptive language has sky rocketed and he is able to understand, "Jet close your mouth." That has been neat to see. His drooling has just been horrible lately and we're not sure why that is. Today his speech therapist was impressed with how much more Jet is trying to vocalize. He is ready to start talking.

Yesterday he had physical therapy. During Physical Therapy he uses a platform swing to help him with his balance. In August of this year, he HATED the platform swing. Down right refused to get on it, because it made him so uncomfortable. And yesterday, he ask Rebecca for it. She was extremely proud of him for that. She was also concerned about the profuse amount of drool.

As most you know, a couple of weeks ago Jet visited a Geneticist. I haven't thought much about that appointment until just a few days ago. During the appointment the Doctor took a urine sample to check hormone levels and a few other metabolic issues. If it ends up being hormone or metabolic, it can be treated.

Here is my request. Please join me in praying that whatever is causing Jet's delays can be treated and he will receive healing. I pray that the diagnoses will be simple and that all of our questions will be answered. Also, if you don't mind, for the next couple of months - please add him to all of your prayer lists and ask your friends to pray for him. I strongly believe in the power of prayer and it is my desire for him to be soaking in it when we make our way back down to Oklahoma City in March for the test results.

For those of you that are faithful readers, Thank you!! It is a tremendous blessing for me to know that there are people out there that are walking with me during this journey with Jet.

Please Enjoy.

We are snowed in and I am really okay with that. Having all 3 kids at home with nothing better to do than ding around sends me back to a simpler time before daily schedules of school and therapy.

We have good friends who live close and they were able to come play today. It was a nice treat for everybody. Jet did a great job of keeping up with the boys. Usually when we get together with friends, Jet hangs back with me and watches from a distance. However, today he tagged along and it was great to see.

Not a lot of news today - Life has been rather low key lately - - Praise the Lord!

I did want to post a video of my three wonderful children. This video really captures the family dynamics in the Patton household.

I got a crazy hair yesterday to paint Anabella's room and today we were putting everything back in her room - which is way her crib is in our room. As Jared and I are trying to get things situated I keep hearing Jet just dying laughing, so I thought - "What is going?" I grab Jared's phone and take off down the hallway, which is where the video begins.

In the video notice that Will is obviously the one that is setting the standard and the other 2 are quick to follow. Jet has ALWAYS thought his brother was Hilarious. I have video of Jet at 6 months and Will at 2.5 years old and Jet is laughing so hard he can barely sit up.

This video truly captures an average day in our house and I feel Richly Blessed to have such healthy and  happy children, because I am completely undeserving of it.

Please enjoy.

http://www.youtube.com/watch?v=kJeqYtfdETA

And to answer the question that all of you are asking... No my children don't ever actually wear real clothes. :)

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.

Ooops.....

On Saturday Morning I took Will to get his flu shot and Jared stayed home with Jet and Bell. Jared hasn't been feeling well and was feeling "foggy" brained. I had bought Anabella a few things with gluten in them, because I don't feel the need to make her go entirely gluten free. Well guess who got a gluten filled cereal bar for breakfast... that's right - Jet. I think my reaction to that news was, "Well, Poop!". The upside of that - we get to see his reaction to it. I think that if we would have known the literal hell that the next few days would hold - Jared may have thought a little more about doling out cereal bars.
Jet did not take a nap that day (and he is a faithful napper), he threw up that night, and he eventually passed out around 11pm that night. I have learned that when Jet fights sleep = he doesn't feel good. He woke up early Sunday Morning in a terrible mood and he has been in that mood ever since.
But that's not all. I had bought donuts for Sunday School. The leftovers were in the kitchen, because I was going to take them to MOPS. I heard Jared in there Sunday night saying, "eat it, eat it". What was he talking about? Well, apparently Jared gave Jet a donut and Jet was looking at it like... "are you sure I can eat this?" Jet came waltzing into the living room with a donut. My response this time... (casually) "What's he eating?" Jared's response, "Oh No!!! A Donut!" My response, (not so casually) "What!!!! Get it out. Get it out."
For Jet eating gluten is like a vampire getting a taste for blood, he has to have it.
Monday morning, I had to stop by the donut shop and get more donuts (because Jared and I have the same reaction to gluten as Jet and we ate all the donuts... oops!).
Jet practically jumped on the donut box trying to get a taste of at least one donut. He manage to mutilate two, but wasn't able to get even a bite down. However, when MOPS was over the first thing he went looking for was a bite of leftover donut and he succeeded in findinf a small bite hidden under the chair.
Wait... there's one more. Anabella was snacking on small Gerber cookies and he decided that he should help her get those eaten. So there's some more gluten you can add to the pile.
So Jet has pretty gotten a bite of gluten everyday this week and my weak has been HORRIBLE!!!! Jet has cried pretty much constantly.
I just gave up today. I called Jared in tears.There's nothing I can do, but listen to him cry. He wakes up crying and goes to bed crying.
It has to be the gluten right? Or is this just a terrible two season? I don't know, I guess we'll find out next week. Hopefully, it will get better.
You know some days are just hard. The constant drooling, the absolute messiness at meal times, the "uh uh" grunts instead of words all day long, the tantrums, the clumsiness, not being able to follow direction, constantly asking for food and milk, stealing Anabella's binky all day...
I am not a hero Mom. At least once a day, I say a silent prayer..."Please take over, because I can't do it anymore." I loose my temper, I yell, I feel like the majority of my day is filled with a to-do list and that I get very little quality time with my children. I go to bed most nights wondering, "What the heck am I doing?".
I asked Jared today at lunch, "When is this season going to be over?" It feels like we've been here a long time and I'm ready for it to get a little easier.
But on the upside - we got good reports this past week from all of his therapists. He seems to be making improvements. Here's a few pictures and video of this past week.

 Here he is holding Sissy while she drinks her bottle.

I was getting dressed this morning and I Jared go do a kid count and this is how he found them. They are so much company for each other. This one of our sweeter moments of the week.

Last Saturday Jared had the boys out at my parents house. My folks got this for Will last Christmas. Jet did a pretty good of driving it - difficult steering it, but figured out how to make it go.

Please be praying for my family this week. My heart needs to see God move in a big way. I hear things like,"What an amazing story he is going to have." And I know that is the truth. But honestly, at this point I'm ready for the happily ever after part of the story. 

I'm a loyal watcher of Kathi Lee and Hoda and Hoda said something yesterday that rings very true to our lives...

"I know that we have it better than some and worse than others and I don't want to hog our Journey." 

So, on that note... thank you for joining us on this journey and most importantly praying for us. We need it!

Proud of him!!!!

Sorry it has taken me so long to update the blog.

Last week proved to be an interesting week. Found out that pretty much the only ketchup with Gluten is Hunt's, and guess what kind of ketchup we had in the fridge - that's right.... Hunt's. So that sucked. Gluten is tricky and it likes to hide.

If I haven't mentioned it already, Jet has 3 obsessions... (1) chocolate milk, (2) bananas and (3) power lines. And now you can add a 4th - Marshmallows. Last week he said his first sentence - "I want one more." And he even held up his finger. Pretty impressive. He of course, was talking about marshmallows.

Jet's OT was very impressed with his improvements. She had not seen him since he started his gluten diet and thought that he had come a long way in just a couple of weeks.

Jet's ST that only sees him twice a month saw him today and very pleased with his progress. She noticed that his attention span has increased, he tried to imitate her, and was very attentive for the entire hour.
He has become more purposeful in his communication and is trying a lot harder to get his point across. For example, the other day he wanted Anabella to play with him in his kitchen, so we went and tried to drag her over there. That didn't work - so he pointed to her and then pointed to the kitchen. She got the drift and followed him over to the kitchen. He's been doing a lot of things like that.

And finally, let's talk about his gross motor. Oh my goodness, it is actually really amazing. For the first time ever, I sat on the park bench at the Green Park and Jet went and played all by himself and he didn't even break his leg. :) Or fall down. :) He did great. And we went to Chic-Fila tonight and he played all in the big playground, covering every square inch. There were a ton of kids in there and he didn't even care. Normally, he would have been overwhelmed and just stood watched from a quiet corner, but not tonight. I was EXTREMELY proud of him.
His gross motor is absolutely where I have noticed the greatest improvement and it seems like it happened overnight.

This is Jet at the Green Park. It just makes my heart smile, because just a couple of weeks ago this would have been very difficult for him to do.

In this next video, Jet made it very clear to us - by matters of pointing - that he wanted to go down the slide with his baby sister.

Another amazing moment - we went to Toys R Us tonight to look at getting Anabella a birthday present and they had one of those big wooden train tracks set up. Jet took a train, put it on the track, and made it move. This may seem mediocre - but trust me this is HUGE, with a capital H. Once again I was very proud of him.

One other thing that makes me so very proud of him - He has been around gluten filled food here recently. We took a little trip with Jared's family where there were Pancakes, cupcakes at life group, last week we went to a Mexican restaurant with fried tortilla chips and tonight we went Chic-Fila with fried nuggets. And you know what - he could have cared less. He just ate his food right up and didn't even ask for foods that had once been some of his favorites. It is such a God thing. Because to be perfectly honest, it would be heart wrenching to see him beg for food that he couldn't have.

Here's a picture of Jet at the Chile Cook off in Kansas that we went to this past weekend. He missed his nap and is just searching for someplace to lay his head. 

Notice in this picture and all of the videos that Jet has his mouth open and his tongue out. His oral motor still needs a lot of improvement. He went one day last week with just a little bit of drool, but we are still dealing with a consistent amount of drool on a daily basis. And he's grinding his teeth Horribly. I'm not sure what to do about that.

Generally at meal time Jet will literally become dirty from his head to his toes. There are times when we have to rinse him off in the bath tub because that is just easier than trying to wipe him off. However, one day last week he used his spoon so much that he only became slightly dirty. So we're starting to see hope in that area. Meal times are usually very stressful because he struggles so much to get food in his mouth and then swallowing it and everything else that goes with eating.

So here's my moment of truth - - I desperately want to see his speech improve. My heart desires to see a miracle happen. For me, that will be a sign of his healing and that this Gluten Free diet is doing him good. It may very well be selfish on my part, and if that is the case I pray that God will make me selfless and allow me to see the bigger picture. Because honestly, I have a gigantic fear that he will never be able to talk.

Thank you all for reading and I'll do a better job of keeping you updated.