Week 1 Update

Late with this update, but it's really hard trying to find time to sit at the computer these days ;)

Anyway, the 1st week was a good one for Jayden, although he did seem EXTREMELY emotional. His notes from school said that he was crying about every little thing. He did the same thing this past weekend. At a birthday party he cried several times and then admitted later to being bullied. The same thing at Sunday school. I think perhaps some kids are teasing him and now he's getting sensitive about it :( Not sure if any of this has to do with the supplements and/or diet changes or if it's just coincidental. His attention and focus is still not where it should be at his age, but I did notice an improvement. Also, he is very easy to get back on track and to calm down when he gets upset. We've heard lots of "Yes Ma'am" and "Yes Sir" accompanied with him following directions on the first time this past week, which has been a great change. He's still behind on his high function words for kindergarten, but it will be a slow and steady stride to get him at least on track b/c of his attention issues. Last night, he enjoyed reviewing, though, and I think he actually LEARNED 6 words as opposed to memorizing what they look like.

His biggest improvement last week, however, was in the foods he will eat. Jayden is 100% gluten free and has been since he was 2.5 yrs old. Rice is (or should I say, should be) a huge staple in his diet. Not only due to his gluten intolerance, but also because he's part of a Filipino family ;) lol. Well, Jayden used to scream at the sight of rice. We were able to solve the screaming issues long ago and he'd allow the rice to share a spot on his plate but he'd refuse to touch it. If we made him try some, he'd gag. Finally, we got him to start eating it but he'd only eat one grain at a time...I kid you not. So, I decided that rice would be one of the first foods I introduced in his EAT program. The first night was tough and involved me feeding him and we were at the table for an hour. The next day, he fed himself some rice at my mom's house. By Wednesday, he was easily filling a spoon with kid sized bites of rice and feeding himself with no problem. SUCCESS!

He's having no issues at all taking his supplements. The fish oil, he wants straight off a spoon b/c he said it makes his smoothie taste funny. He complained of the oily texture at first but now he doesn't care. He always asks for an entire banana in his smoothie so we struggle with getting the smoothie to freely flow through his straw. I'm going to get him a smoothie cup today. Also, I just purchased a PlanetBox lunch box from a friend of mine so we can start to send a healthier and fresher lunch for him. His first request was for celery sticks and they fit perfectly inside the lunch box.

Progress!!

Jayden literally SURPRISED everyone this morning! He doesn't usually go to school on Tuesdays, but his teacher asked me to switch up his schedule a bit for this last week b/c none of his classmates were coming on Friday. So I got him dressed this morning and on the ride to school I said "Your friends are going to be so surprised to see you today!" He just smiled, and continued to complain about the sun shining on his neck. LOL! We got to school, and normally what happens is Jayden will walk with me to the cafeteria and even open the door himself and walk right in, but the minute that he sees his class, he falls out on the floor! We've had maybe 3 good mornings where he went without a fuss, but usually he likes to perform. Well this morning he turned around and gave me a sweet kiss, and then I opened the door for him and he JUMPED through the door and yelled "SURPRISE!!" I was so shocked! I peeked in, though, and saw that his class had already left the cafeteria. Jayden looked at me and said "Oh no, she's gone!" I said "It's okay, let's just walk back to your class." and he said OK! So we walked to class and he kept looking at me smiling and every now and then he say "SURPRISE!" almost as if he was practicing. As we got closer to his class, he ran ahead of me and he threw the door open and JUMPED in the class and yelled "SURPRISE!!" I bust out laughing and so did his entire class!! OMG it was too freaking adorable. He went into class like such a big boy, with the biggest smile on his face. And I watched him as he took his bookbag off his back and hung it on his hook, then went to join his class. I am so proud of him. He's come so far!!

THE BEST UPDATE EVER!!

It's been a while since my last update, but I'm happy to say that Jayden is doing better than he's been in months!! He's like a brand new child! We did have a set back due to the addition of Keppra!! for his seizures. He was getting bad reports from school and he was out of control at home and not getting much sleep at night. He was also VERY emotional. If anything left his sight (including me, or a favorite toy) he would get frantic and fall out on the floor weeping :( I read online that children with epilepsy usually have an increase in seizure activity whenever they get sick. Jayden had strep throat and bronchitis when his multiple seizures started, so I say he was pretty sick! So I was thinking that he really didn't need the Keppra!! anymore, and since he was on the smallest dose, I wouldn't need to wean him off. I could just stop it. I called the neurologist and explained my concerns and he agreed to stop the Keppra!! and said for me to keep it handy in case the seizures start again. I think his last dose of Keppra!! was Monday morning, and so far he has been absolutely fine. Each day of school, his report said that he participated well in EVERYTHING! And one day we pulled up to pick him up and saw him taking turns on the slide with his friends. He made a mistake and pushed one little boy in an anxious attempt to get one last slide in before he went home and he got down and did the sign language for sorry and even said "Sorry Trevor"!! I was so proud of him!

Now, I have even better news!! My child EATS!!! He has been eating at least 2 and sometimes 3 meals a day! And get this, he actually ASKS me to eat!! WHO IS THIS CHILD?? This is not the same child who was on the verge of getting a feeding tube placed b/c he wouldn't eat anything other than McDonald's fries once a day! Now he's eating grilled chicken and begging for more. And I have to say a big thank you to a lady named Elizabeth Barbone. I've searched the web for Gluten free recipes, have two other GF cookbooks, and I've tried so many tricks, but all of those recipes were bland and grainy and Jayden wouldn't go near them. Well I saw on a website that this book was a must have in a gluten free kitchen. I saw that it was for baking and thought "I really need FOOD recipes, not desserts" but I still went ahead and ordered it b/c I know I'd been looking for a better cornbread recipe for Jayden. Well this book came in and there's a recipe for buttermilk pancakes. I decided to make a batch since I had all the ingredients on hand. First pancake came out and I tasted it, fully expecting a mouth full of sand...UM, boy was I wrong!! That pancake was better than any gluten filled pancake I've ever tasted. It tastes like the good old fashioned pancakes my grandma used to make for us as kids!! I ate the entire thing!

Then when the next one came out, I offered it to Jayden. I watched him from the side of my eyes and he never sat his fork down. He was happily eating the pancake! And then, when he was done with it, he sat his fork on the table, finished chewing what was in his mouth, then reached his plate out to me and said "Mommy!! MORE!!" HAPPY TEARS!!!! OMG, I gave him as many as he wanted. He stopped at the third :) I froze what was left and he's been enjoying pancakes and sausage for breakfast for a week now. Then he'll eat a sandwich for lunch (usually a late lunch since he eats so much breakfast now!) and a chicken tenderloin for dinner if he's in the mood. I know it's repetitive, but this is a miracle for a child who was living off of fries and milk! And he put on the weight that he lost when he was sick. He looks and acts so much healthier now!

He has a GI appt scheduled for the 4th and we are also meeting with a dietician and were supposed to discuss a feeding tube. I seriously doubt that we will need to discuss that tube anymore! Praise the Lord! I know he will still have set backs since he has the epilepsy, but for now we are living in the present and taking it one day at a time. Thank you to everyone who has been praying for him! And if you don't already have Elizabeth Barbone's cookbook, you need to get it!! It's a must for ANY kitchen! Even if you are not gluten free!!