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.

A week in Review.

I've intended on updating you guys all week, because it has been quite a week.

Monday was a wonderful day, we didn't have to be anywhere. Which was a very nice change of pace. We dinged around the house and went to the library. I told Jared that I wish everyday could be like Monday. Unfortunately (or fortunately - depending on how you look at it) most of my days are like Tuesday.
On Tuesday Jet had 2 speech therapies and a physical therapy. Plus we had to go to 3 different grocery stores to get all the "right" food. However, this gluten free diet has given me so much more energy that I didn't want to commit myself to a looney bin come 6pm - which is unusual for me.
Jet's speech therapist from Soonerstart was very pleased to here that we went gluten free and is hopeful that we will see improvement as is his physical therapist.
At both speech therapy sessions, both therapist were very impressed with Jet. One said that he seemed much more aware of his surroundings and was very vocal. And the other therapist couldn't believe all the words he said and how interactive he was. Both reports make me hopeful that this might just work after all.
At physical therapy Jet threw a ball at a target for the very first time. We were all jumping up and down with excitement. His PT thinks that it is time to start thinking about putting him in SMOs (a foot brace) to stop his feet from turning in. This makes my heart hurt, but I of course support anything that could help him.
The rest of the week was pretty typical. Not a lot to talk about there.

In all honesty, I am noticing small improvements in Jet. He can point to things in a book when asked where something is, he is able to take his shirt off all by himself, his fine motor skills are improving, his is consistently saying "that", "dada", "sister", "banana", "milk", "mama", "movie" and maybe even some more. And every now and again you'll hear a random word.
While riding in the van, he's starting to point to familiar places - like McDonalds, Taco Bell, and church.

This week I'd like to take a minute and do another recording to see where he's at. 

We went to the zoo today and had a TON of fun. Here's some pictures from our day.

 Jet was slightly freaked out that he was sitting by a baby elephant.

Here's Jet with his best buddy. They always have a lot of fun together. She's been sick this week and Jet has done everything in his power to help keep her happy. It is truly amazing watching him care for her. I've never seen anything like it. He brings her books and binkies. He gives her hugs and kisses. He is so sweet and nurturing.


Here's a video that we took today. In this video you will find Jet telling us all about this little penguin. It wasn't too long ago that Jet was quite all the time. I know it's hard to believe but his speech has come a long way in the past year. Now all we need to do is get those utterances to become real words. That's my prayer, "for him to have a voice".

As easy as it is being on this gluten free diet. It is still a challenge and has been a major change in lifestyle. My hope is that at the end of these three months the change in Jet will be so drastic that we would be out of our minds not to keep him on it. Please pray that happens....

Thank you Grandma and Grandpa Patton for keeping him on his diet this weekend. I know it was difficult, but it is greatly appreciated.
Also, thank you friends and family for going out of your way to send me recipes and give me ideas. I value all of your input and feedback.
Lastly, thank you for reading about my very sweet boy. I know lives are busy and the fact that you care enough about my son to keep up with his progress means the world to me.
Lela

Puke and Poop... Sorry Folks.

Jet has adjusted well to Gluten Free. In fact, we all have. We've had a couple of stumbles this week. On Wednesday morning I fixed myself a smoothie for breakfast. Jet LOVES smoothies. They tend to upset his tummy so I try not to give him too much, but when he looks at you with those big brown eyes - it's hard to say no. So I let him have about 1/4 of a cup of smoothie to appease him.
On Wednesday night he had a really hard time falling asleep. I have come to discover that this usually means that he has an upset tummy. Well sure enough Thursday at the library he spit up. I know it sounds weird for a 2.5 year old to spit up, but he still does. When we came home I decided to look at the ingredients on the yogurt and what should I happen to see, "Modified Food Starch" - Gluten in her ugly disguise. That must have been the culprit.
We started our Gluten Free diet on Tuesday and Monday night we had a Gluten blow out. Pizza, Cookies and Soda. On Tuesday and Wednesday I noticed mucus in Jet's poop. So what would any good mother do? That's right - you guessed it - I googled it. Come to find out mucus in poop can indicate a lot of things, one of them being - a food allergy. So we may be on to something here... Not sure yet.
I made our first gluten free pizza tonight and about 3 hours after eating - Jet puked EVERYWHERE!!! TWO TIMES!!! I have never seen so much puke, oh my goodness! Sorry to gross you out - but it is the truth. I went over everything that he's eaten tonight and can't find a culprit. Therefore, he must have the dreaded stomach bug. Jet has never had a puke bug in his 2.5 years, so I guess we should count ourselves blessed.
On a lighter note - Jet started a new Mother's Day Out program on Friday. His class got to go "Indian Summer", a festival in Bartlesville. A little girl at the Pow Wow chose Jet to come dance with her in the dancing arena. I thought that that was really cool.
A ray of hope - I'm cautious of saying this because I don't want to make a fool out of myself - but I think cutting out Gluten is helping Jet's speech. He has been "talking" a lot. I'm not sure of what he's saying, but he certainly seems to know. I'm pretty sure he said "hand sanitizer" tonight after he puked. I could be delirious, but I honestly think that he said it. We'll see....

Here is just deep in thought tonight at Indian Summer, no doubt thinking about all the puke that is getting ready to go down.
Thank you all for reading. I apologize for all the grossness. I have promised to real while doing this blog, and unfortunately grossness has ruled the week.

Day One

Today was first my Walmart trip and it actually wasn't too painful. Everything of course cost more because the cheap foods aren't as good for you. Prior to this we always bought Great Value, if it was an option. I told Jared that I might need to get a second job just pay for groceries. However, we should save some money by not eating out as often.
One of the things that was so helpful was my IPod touch. I have an app called Gluten Free and it is AMAZING!!! I paid $7.99 for it, but it was way worth it.
We ate Gluten free at every meal today and all of the meals were very tasty. This was a great surprise for us.



Since the entire goal for this change in lifestyle is for Jet to get caught up to his peers, I wanted to video document his development to see where we are at the end of this 3 month trial period.
It is very obvious in this video how sweet and lovable Jet is, but it is also obvious that he struggles to do simple tasks. Tasks that an almost 3 year old should be able to do easily.
I plan to do a video documentary at least once a month.



Here's a picture that we took today. Jet with his best buddies.

We went to Mops yesterday and Jet brought home a little craft that he made with a verse on it that I am clinging to...

Pslam 84:11

For the LORD God is a sun and shield; the LORD bestows favor and honor. No good thing does he withhold from those who walk uprightly.

If I am being very transparent and vulnerable (which I faithfully try to do) my greatest desire for Jet (besides Salvation, which I know is all that really matters) is for him to have a voice. Surely, God won't withhold that from him? I trust Him, I really do. But I am earnestly seeking "healing" for my son, and I pray that this is how He will do it.

Thanks for reading!

Meet Jet

So who is Jet?
Jet is the sweetest baby that you will ever meet, I promise. He laughs and smiles all the time.
He was ALWAYS content as a baby.
He loves his big brother, Will. He tries to do most everything that Will does and it is really cute.
He adores his baby sister, Anabella. And when I say adore, that is probably an understatement. He's very protective over her and really tries to take care of her. Their relationship is very special.
Most days you will find Jet pushing a shopping cart around the house, watching Super Why, reading books or playing with his sister. Mickey Mouse and Curious George are his favorite choice of character. He also loves to watch his brother play Wii.
Because Jet doesn't have but a handful of words, he communicates a lot with his face. He has huge eyes and he's not afraid to use them. He actually can say a lot without being to say anything at all.
Life has been hard for Jet. Most days have proved to have way too many struggles but his spirit is bright. And he Radiates Joy.
He is a delight to be around and I pray that you will see that through these posts.

Jet's Story

In March of 2007 Jared and I found out that we were having our second child. We wanted a new experience with this delivery so we decided to wait to find out the sex of the baby and we kept the name a secret. In December of 2007 we had a scheduled c-section (because my first came emergency) and were blessed with a beautiful baby boy named Jet Michael. That day has entirely changed our life and it has been a bumpy and windy road ever since.

Jet was born with a bi-lateral hard and soft cleft palate. Unfortunately, those first days were extremely stressful. I was unable to breastfeed, which was devastating to me. We tried to let him nurse for three days and nearly starved him. Jet was born 8lbs 5oz and on day three he was 7lbs and dropping. We started him on formula and he still didn't gain weight.

Through out the past 2.5 years when I'm just about to melt myself into a little puddle, God always puts just the right person in my life at just the right time. At this time, he placed Lori Davis and the TU Cleft Palate team in my life and they have been life saving.

Lori stated very clearly that I needed to get him on a high calorie formula. We changed his bottle from the Haberman to the Mead Johnson Nurser and after a month Jet was finally up to birth weight.

That was our first of many trials.

In Jet's first year he had 2 or 3 sets of tubes put in of course when he was a year when he had his palate repaired... Thank you Dr. Kevin Smith, you're amazing!!!

Jet started Speech Therapy when he was 11 months with SoonerStart (our 0-3 year program here in Oklahoma). At this time, Jet had delays in all areas except Social, but not enough to qualify for services through Soonerstart. 

Jared and I had hope that when Jet's palate was repaired he would be catch up to his peers.

However, at 18 months it became clear that Jet still wasn't catching up. He still drooled horribly, was not talking at all, just began walking at 15 months, wasn't pointing and the list goes on.

At this point we enrolled him private physical therapy, to help with oral motor strength. In September of 2009 he had to have 2 other sets of tubes put in and he also broke his leg. He broke his leg going down a tunnel slide while wearing crocs. Jet tends to have bad luck. During that month as well, we changed speech therapists in Soonerstart.

At Jet's 2-year check up I knew that he still wasn't were he should be. His doctor said the "A" word (autism) and referred us to a Developmental Pediatrican. During this appointment, we discovered that Jet has a global development of around 18 months, except social (which rules out autism). This doctor ordered an MRI. Jet had genetic testing at 4 months, which was normal. A few weeks ago the MRI results came back normal. So now the question is, "Why?". Where is this global delay coming from?

Jet is still in Speech Therapy through Soonerstart, until December. He is also in Private Speech Therapy twice a week, Occupational Therapy once a week and Physical Therapy weekly. 

So now what.... We go Gluten Free. Gluten Intolerance runs in my family and in fact, I have a nephew with Celiac. (Jet tested negative - but he's too young for an accurate result.) Jet has been diagnosed with Acid Reflux and maybe Gluten has something to do with that. I have read studies that have linked delayed development to a gluten intolerance. So now we're going to turn this rock over and see what's underneath. We are going on a 3 month journey and I am going to document our story during this time. I hope that you will walk with me through this time. I realize that we could have picked a better time. We are going to be gluten free during Halloween and Thanksgiving, which should prove interesting. My prayer is that our gain will be worth the sacrifice.