Lesson learned from the GFCF Diet

Pre- Gluten-Free/Casein-Free Diet, I fed Noah ALOT of (unhealthy) Gerber meals... you know, the kind that you just pop in the microwave. I did it because it was so easy and it didn't cause any kind of mess in my kitchen (like dishes to wash, etc.) I was big on convenience foods. However, since implementing this diet, I've had to go a different route... and it's SOOOO much more healthier and better for Noah.

Here's some examples of what I've been feeding him Post- GFCF Diet:

scrambled eggs
Gluten Free Chex w/ Rice Milk
Steamed Veggies (with a little butter substitute and garlic salt)
Turkey meat (I'll tear it into pieces and mix it with stuff, such as the veggies)
White Rice
Lots of fruit (strawberries, peaches, oranges, applesauce)
Peanut Butter and apples
Baked Potato (with butter sub. and Casein free cheese)
Raisins
Sweet Potato (w/ butter sub. and cinnamon)
Gluten free Pasta with Amy's All Natural Spaghetti Sauce (GFCF)
Grilled Chicken
Occasionally I'll do a Grilled Cheese (with Rice Almond Bread and Tofutti Cheese) or PB sandwich

I'm DEFINITELY feeding him better well-balanced meals and he LIKES it... which is the crazy part. He hardly eats bread or carbs anymore and he's eating fruits and veggies at almost every sitting. We used to give him so many carbs it was ridiculous. Pre-diet, instead of trying to come up with a healthy meal, I went for the easiest option, something pre-packaged and quick. My go-to meals were mac-n-cheese (you know, the microwave kind), soup, pb&j sandwich, hot dog weenies, grilled cheese, and gerber meals. So even if this GFCF diet doesn't have an effect on Noah, I'm still sticking with the healthy well-balanced meals, just non-GFCF versions. I will never buy another Gerber meal again!

Now, as far as any changes that I've noticed... none so far. But I've read where I need to keep it up for 1 - 2 months to notice a difference. One thing that I think I forgot to mention is that I'm also giving him liquid B-12 (as recommended) twice a day.

However, on a different note... this little boy is pulling up on any and everything now. He used to only do it on carpeted floors, mainly in the den, and only on something that was really sturdy, such as furniture. Now, he is no longer content just sitting on the floor; WHEREVER we are, he grabs onto something and stands up. He opens the bathroom drawers and stands up by holding onto them and then plays with whatever is in the drawer (99% of the time it all ends up on the floor because he loves emptying drawers). He grabs the kitchen counters and stands up.... barstools, the kitchen table, my leg, etc. I don't think words could express just HOW happy it makes me! And he's become fearless about it... he'll be in his socks and grab onto something and stand up in the kitchen (on the tile floor), and slide down because of his socks... only to turn right around and do it again. Just a couple of weeks ago, that made him so upset to the point where he would be crying (even if he didn't hurt anything). I KNOW walking is soooo close I can almost touch it! :) I CAN NOT WAIT for him to finish up his program next month because I truly think it's all he'll need to be walking all over the place! I told Jamie that when we come home from B'ham, it's my DREAM for Noah to walk to his daddy to hug him! The thought of that just makes my heart so happy. I know Jamie and I both would LOSE it if that were to happen. :)

Christmas Time... Warning: Lengthy Post!

I apologize in advance for this lengthy post... but I love having a "record" of what we did each Christmas, so I'm sparing no details. We had a wonderful Christmas! Christmas Eve Eve we went to Mom and Dad's where we exchanged gifts with Derrick (Lindsay's bf) before he headed home the next day. He and Lindsay got Noah an inflatable ball pit that was a HUGE hit! Noah had a great time playing with it. The next morning, Christmas Eve, we went to my grandmother's (my dad's mom) for breakfast and presents. My dad's family is LARGE with a grand total of 35 people when everyone is there. So it's pretty loud and crowded and crazy but always fun. Noah is always a little overwhelmed but he seems to be warming up to everyone alot more lately. He's gotten to where he plays some with the younger kids and he'll go to my other family members when they want to hold him. He was a bit uncomfortable while everyone was opening presents just because it was SOO loud and chaotic but he got over that pretty quickly. Afterwards, my mom took Noah to go play on the piano in my PaPaw's old bedroom and he had the greatest time banging on the keys with my cousin's little girl, Allison (who is a week older than Noah). Just to clarify, my Poppaw had Alzheimers for over 20 years and was bed-ridden for the last 7 years, so he was in a hospital bed in a seperate room from my grandmother... that's why I say "Poppaw's bedroom"... it's not like they slept seperately or anything. But back to the story, anyways, everyone came in to watch Noah and Allison play the piano, which led to my Aunt Linda (who is awesome at playing the piano) to begin playing Christmas songs, which caused everyone to join in singing. As corny as it sounds, it was actually a very special moment for me. My Aunt Lin in addition to be a great piano player, has a beautiful voice and my PawPaw used to LOVE listening to her sing and play. Here we all are in the bedroom he passed away in, singing and having a great time together. I KNEW he was smiling as he watched us. Not only that, but I was SO IMPRESSED with how many of my aunts and cousins (and my dad, which I already knew) could sing REALLY GOOD! It was definitely one of those moments I'll remember for a long time.

After MaMaw's house, Jamie, Noah and I went home to let Noah nap for a couple of hours, then on to visit Jamie's grandfather, Papa Jim, who had had back surgery the day before. We went from there to Jamie's parent's house for the evening. We used to always spend the night on Christmas Eve with them and the rest of Jamie's family but this year we decided we wanted to begin our own tradition of spending Christmas Eve at home (which was sooo nice). So they let us open our gifts that night. My goodness... they always do a really big Christmas and they didn't disappoint by any means. It's a good thing we just turned our spare bedroom upstairs into a playroom for Noah because we needed it after all the toys Noah racked up on. We really enjoyed spending the evening with Jamie's family; it's even more fun now that Noah's not the only kid... Madelyn is almost 10 months and Eastlon is almost 2 months so its great getting to play with and love on them.

Around 8:30 or so, we loaded up the back of the car so we could head home. By this time, it was raining pretty hard. We get Noah in his carseat and I'm in the car when Jamie realizes he can't find the keys. He runs back in the house to look for them, to no avail. After he and I search my purse, Noah's backpack and the front and back seats, we still can't find them. I drive an Expedition and the ENTIRE back was filled full of presents, and we were afraid Jamie had laid them down in the back while loading the trunk. SO, in the pouring rain, we unloaded the trunk and searched through every box and bag that we had loaded up but STILL couldn't find them. I run back in to look over the house... nothing. By the time I get back outside, Noah's screaming his head off and Jamie's very frustrated so I get Noah out of the car and run back inside (we are now all 3 soaking wet). Finally, after 10 more minutes or so Jamie checks Noah's bag again and finds them in the bottom of his backpack. I'm not pointing fingers butttt, it wasn't my fault! :) He was pretty frustrated at the situation, as was I, but the LAST thing I was going to do was say something to him. Anyways, we get home and after we all changed out of our soaking wet clothes, we were able to laugh about it. We had invited my parents and sister to spend the night with us since it's just the 3 of them. Noah had a second wind so we read The Night Before Christmas and played with a few of his new toys before putting him to bed. After an hour or so of assembling Santa gifts, we hit the sack!

Noah LOVED playing with his new toys and was so excited Christmas morning! And to top it off, it SNOWED! It didn't cover the ground or anything but it was nice to have a little snow on Christmas. My mom and dad left around 10 to head home and prepare lunch, while the rest of us showered and got dressed. We spent the rest of the day at my parents house and had a WONDERFUL lunch, followed by napping and relaxing. Noah was a live wire... he was going non-stop all day. My parents had fun chasing him around all day (to give me a break) but later told me that he wore them out! :) My grandmother (my mom's mom, Nannie) used to make the BEST dressing and my mom and dad got the recipe from my grandmother once she was no longer able to make it. It really is my FAVORITE meal... I really considered having it served at my wedding reception but decided to go with the traditional shrimp and chicken tenders (dressing in August?... hey, I'd still eat it! :) Anyways, my parents did a great job and it tasted JUST like Nannie's. I didn't even eat dessert that evening because I just snacked on dressing... YUM! All in all, we had a WONDERFUL Christmas and look forward to all that 2010 has in store! I'm attaching just a few pictures since I've typed SO MUCH!... sorry, again.


Noah in his ball pit



Christmas Morning

One Week Down...

So, Noah's been on his GFCF Diet for one week now and I must say, it's getting a tad bit easier. I'm coming up with more options for him to eat and surprisingly, he's doing very well eating all the foods! This past weekend, my mom found some items at Publix in B'ham so that's helped too. He's been eating alot of steamed veggies, rice, turkey meat, potatoes, sweet potatoes, fruits, etc. so I'm afraid he might lose some weight and he's skinny enough as it is! The only difficult thing I've found about the diet is whenever we are not at home, I'm having to plan ahead. For example, on Sunday, we went to church, so I packed him some GFCF pretzels and juice. During Sunday School (me and Jamie were filling in for one of the teachers), they had a "Happy Birthday Jesus" party and everyone had cake and chips... and poor little Noah sat there and ate his boring old pretzels. :( Poor guy... the good thing is that he could really have cared less. Then after church, we went to my grandmother's to eat and there wasn't anything that Noah could have. At this point we had only been doing the diet for a few days, so I didn't think to ask my g-mother for some fruit or something to tie him over until we got home. So Jamie and I ate quickly and took him home and fixed him something. I felt so bad that I didn't pack him a sandwich or something. So, lesson learned... always pack a sandwich, just in case.

With Christmas coming up in the next few days, I'm going to have to get creative in order to make some meals to pack to take to all of our family functions. My mom plans on making seperate dishes for our Christmas lunch that Noah can eat so that will help out tremendously! What would I do without her?! :)

Opryland Hotel

This past weekend, my mom, dad, Jamie, Noah and I went to Nashville on Friday evening. Everyone had to work so we didn't get to leave until that evening. We got up Saturday morning for a little shopping and alot of sight seeing! My parents hadn't been to the Opryland Hotel in a long time so it was a treat for them, plus we were excited to see what Noah would think of all the Christmas decorations. HE LOVED IT! He was so excited the whole time, looking all over the place, taking it all in. He got to have his picture made with Santa and surprisingly, he didn't cry! He was such a trooper the whole day, he didn't get to nap until we were heading home that evening, and he didn't fuss the whole day. We had a great time!

Noah's Dieting

Gluten Free - Casein Free diets have recently been found to help in curing autistic kids of their symptoms. It has to do with kids with autism having severe allergies to both of these things and it's like a poison in their system and they can't break it down. Therefore it inhibits their development, etc. Also, gluten has an "opiate-like" affect on children that have gluten allergies, so it puts them in a drugged up like state (zoned out, no eye contact, limited speech, etc). Noah doesn't have autism but he definitely has the developmental delays. Our physical therapist told me a while back about how she works with several kids that are delayed (no autism) where their parents have put them on the GFCF diet and their development has improved drastically and she really wanted me to put Noah on it for a little while and see if it helped him any. Obviously, we will do WHATEVER if it helps Noah but to say I was overwhelmed at the thought of this diet is the understatement of the year. I AM NOT saavy in the kitchen, and (as embarrassing as it is to admit) I don't cook very often. Gluten is found in wheat, barley, and rye... therefore breads, crackers, cereals, chips, cookies, basically EVERYTHING! It's also in tons of processed foods, from canned soups to soy sauce and ketchup. Also, Casein is found in milk and dairy products, so cheese, milk, ice cream, butter... all off-limits. We are also doing no soy. The only milk I've found is Rice Dream. So I have to know what to look for and check the ingredients label of everything before we give it to Noah.

See why I was so overwhelmed?!

Anyways, I enlisted my mom's help and we purchased a book to tell us all about it (and other food allergies) and gives a TON of kid-friendly recipes. The grocery stores in Florence (Walmart and Southern Family) have a very tiny selection of gluten free casein free foods (I did find brownies, pretzels, and rice noodles for making pasta). So I had to go to the health food store and was able to find a rice almond sliced bread, cereal, apple cereal bars, peanut butter, mayonnaise, cheese, and rice flour (for baking). Like I said, gluten is found in processed foods so the only sandwich meat I can find that's GF (at least around here) is Boar's Head. The diet is alot of fruit and veggies and meats.... which as most of you know isn't on the top of "my favorite foods" list for most toddlers. Our plan is one day a week, to cook several meals and freeze them. This diet is not cheap... those 7 items that I purchased at the health foods store cost $45! I'm hoping that when we are in Huntsville for therapy I can find some things at Publix or Whole Foods for cheaper. It requires ALOT of meal planning. Noah can't eat fast food or at restaurants at all. So I'll have to pack his meals if we got out to eat.

Today is Day 1 on the diet. They suggest trying it for 2 months to see if there is any improvements. I'll keep up with his progress on here to let you know if we see any kind of changes.

One thing I would like to mention, in talking with the owner of the health food store, I told him that I've had Noah on soy milk for several months (because he has constipation issues with regular milk) and he told me that BOYS should NOT take soy milk because it's loaded with estrogen and causes boy's hormone levels to get off kilter (they have more estrogen than testosterone)!!! YIKES! I had no clue... my pediatrician is the one who suggested soy milk!

We got THE call...

The Physical Therapy department of Children's Hosp. called us this afternoon to let me know that they have worked Noah into the Spider Suit Program (the intense physical therapy program) for January! We had our evaluation back in July and they told us it would be sometime during the fall or winter when he'd get in, then about a month ago they told me it would be more like February or March... but apparently they had an opening and got him in! So Noah and I will be staying in Birmingham with my aunt for 3 weeks while Noah goes through the program. It's Mondays, Wednesdays, and Fridays from 8:30am - 12:30pm for 3 weeks so it's definitely strenuous. I hope that Noah cooperates well and gets the most out of it. I'm very excited about this and really really praying that he'll be walking at the end of the program (I've heard it's possible!). Jamie's not looking forward to being by himself for 3 weeks but of course, is excited about the rewards that will come out of it.

Noah has a tendency to be a difficult patient when it comes to his therapy sessions. Each week in Huntsville, he fusses and cries (very loudly and persistently) to try and get out of doing his therapy (and he won't cooperate AT ALL with me in the room so I always have to leave.) About a month or two ago, he started doing REALLY good, and wouldn't cry and just did exactly what the therapists wanted him to do, but as of the last 2 sessions, he has reverted back to his crying and stubborness. So please keep Noah in your prayers as we get ready for this and that he does a great job and cooperates with his therapists during those 3 weeks and gets TONS of benefits out of it!

Test Updates

Back in September, Noah had some blood work done for a few more genetic tests (P-10 and Sotos Syndrome) and they told us we would get the results in a few months. FYI, doctors/physicians assistants are not very good at calling in with results. I've ALWAYS had to call them to ask if the results are in... so anyways, I called our Genetic Counselor several times last week, finally got her and yes, the results were in (but why hadn't she called me to tell us, who knows?). Both test came back NORMAL. Our Genetics doctor, Dr. Robin, has thought of one more test (more bloodwork) that he can do on Noah so we'll be going back that way in 3 months or so, but after that, there is nothing left to check for for the next few years (genetics is changing so rapidly, that in the next couple of years, there will be others tests we can run... if need be). So YAY, for our normal report!