My Final Post.

One Year Ago - My Three Sweet and Beautiful Children

Well, Folks this will be my very last post. 

I chose to take you on our Gluten Free journey - simply to share the experience with you. And if I can speak from the heart for a moment - I was hoping to share a miracle with you. Hoping that going Gluten Free would be the answer to many unanswered questions. I'm sorry to say that that was simply not the case for us. 

Don't get me wrong - going GF has definitely been a benefit to Jet. Just not as huge as we had hoped and prayed for.

Before I say good-bye, I will update you on what has been going on with Jet because I know that there are a few that are curious.

After several appointments with his Geneticist over the past month we have learned that:

1. All of Jet's urine tests came back normal. Those tests were basically testing hormone levels or any type of deficiency that may be associated with developmental delay.

2. Jet has a slightly larger than normal liver, but still not large enough to be considered abnormal.

3. Jet has a very tiny duplication on his x chromosome. The specifics for that are, Xp22.31. He does not have an entire X chromosome - which mean he would have Turners Syndrome. He only has a VERY TINY duplication, just on little bitty spot duplicated.

So what does all of this mean?

Well to tell you the truth - I have no idea.

There is very little known about Xp22.31. A recent study that was done said that it could put you at risk for developmental delay or it could mean nothing at all. It might also mean that Jet might not be able to produce sperm. 

In the world of genetics there is a lot more knowledge on partial deletions than on partial duplications. However, the world of knowledge is growing extremely rapidly - so in another 2 years they may have more knowledge on it.

If this duplication is indeed causing Jet's developmental delay - it basically leaves us in the same boat. We don't know his prognosis. We don't know if one day he will eventually catch up to his peers. We don't know if he'll ever be able to talk. We don't know anything.

Since this is my last post I might as well get really personal here.

I serve a God that separated day from night and gave us air to breath. A God that is all powerful. I love Him with all of my heart and I have since I was 14-years-old.

He has given me an amazing Husband and three exceptionally beautiful and wonderful children. He brought my mom back to life when I saw her dieing and through that restored my relationship with my Dad. My God is Good all the time and He has been so faithful to me, despite my sinful nature.

Every time I come close into melting myself into a little puddle He reveals Himself a little more. He has always provided the right people at the right time for Jet. We have INCREDIBLE therapists and Jet loves all of them so much. We have Great doctors that have helped us turn over rock after rock after rock.

If you read through the Bible, especially the Gospels - it is full of Jesus doing miracle after miracle after miracle. Healing people right and left. (I could be wrong in this statement and if I am - please please please correct me.) You never see Jesus say "No" to parent that has laid there sick child down in front of Him. You don't even hear him say, "Not right now" or "In a minute" - He does it immediately.

So why is He saying those things to us? My expectations for God are extremely high because I know in my heart of hearts that Jet could wake up in the morning and say,"Good Morning Mommy." My God is a "Sun Stand Still" God. He could it. But why isn't He? I don't know - I wish He would tell me His plan. I would trust Him and I would be obedient in whatever He was calling our family to do. I guess right now He's calling us to wait. So... we'll wait.

But until He chooses to make our "Sun Stand Still," I will continue to flip over the rocks because I'm a mom and that's what moms do. 

Next month we have an appointment with a Defeat Autism Now doctor in Tulsa. Jet is not autistic but he does have autistic traits - so maybe this doctor will be able to help.

And finally, Thank you for walking us through our Gluten Free Challenge. Thank you for praying for Jet and for the rest of us. 

Please continue to pray for a miraculous healing in our child - I know God can do it. And what a story that would be.

I love each of you. 

I will probably start a new blog in the next couple of months, so keep your eye out for that.

THE END

"If you are willing..."

An Oldie but Goodie - The family dynamics are very obvious in this photo.

 

 

 

Matthew 8:1-4
What an amazing story. The Lord gave me this verse just yesterday and I am clinging to it extremely strong.

I feel like we are reaching a turning point in Jet's life and our lives for that matter. This appointment coming up in March with his geneticist has the potential  to be huge. For over 3 years we have had more questions than answers. And all of that could change with these simple words... "We've found the cause for the delay and it is treatable and curable." Oh what an Amazing day that would be!!!

In the past couple of days I have a gigantic sense urgency to pray for Jet.

I feel like I've been on a roller coaster ride of "worry" with Jet since day one. One minute I'm searching the internet high and low looking for what might be causing Jet's delays and the next minute I'm"okay" with how things are progressing.

But this sense of urgency is different. It's not worry, it's something else. I can't quite put my finger on what it is.

Matthew 8:1-4
8.1 And as he came down from the mountain crowds accompanied him. 8.2 And behold, an approaching leper knelt before him saying: lord, if you are willing, you can cleanse me. 8.3 And stretching out his hand, he touched him saying: I am willing, be cleansed. And immediately his leprosy was cleansed. 8.4 And Jesus says to him: See that you tell no one, but rather go and present yourself to the priest and offer the gift which Moses prescribed, for a testimony to them.

"Lord, if you are willing, You CAN heal him." That is my plee for Jet.

In Psalms you find repeatedly, "Lord I Cry out." I think for the first time in my life, my heart is crying out and begging our God to heal my son.

If I had a plane, I would fly a banner around the world... "Please Pray for a Divine and Profound Healing for my son."

For those that are willing, please faithfully pray for my sweet boy. We need it desperately.

For a word of Praise.
Dr. Harris said that Jet has the best looking repair that he has ever seen. In fact, he said that if he didn't know that Jet was born with a cleft he wouldn't be able to tell by just looking at his palate. That is a Huge Praise because a lot of kids have problems with their palates even after the repair is done.

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.