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!