Noah News Website

Dear Family, Friends and Prayer Partners,

We hope that this site will keep you more informed about the progress Noah is making. We appreciate each one of you and love you all very much.

September 2001
Noah has begun crawling! He has worked very hard for the past several months to get his strength up and has finally succeeded! He continues to amaze us by pulling up in his crib, on the sofa and on our legs! We spent Labor Day weekend baby-proofing the house. It was a much welcomed rite to finally get to do that. Noah is still in therapy twice a week and is getting ready to start a day program in a toddler center. He will go for three hours twice a week. This was recommended by his therapists and his peditrician agreed. Please pray for him as he makes that transition and for his mommy as she does too!

Noah is also eating well. He is experimenting with chewing a little and enjoys a variety of foods including sweet potatoes, homemade mac and cheese and creamed potatoes. We have also been mashing table foods for him. He's still drinking Pediasure�, about 12 ounzes per day. We are experimenting right now with not using the pump at night. If he doesn't lose weight, we will begin the transition to get the Mic-Key button removed. His surgeon wants him to go six months without using it at all before he will take it out. If you aren't familar with a Mic-Key or haven't seen Noah's, follow this link to see a picture of another child's button. Alex's Mic Key Button

At the last helmet adjustment, we were told he would only be in it for another month! Only 1 week to go! Be sure to check back at the beginning of October to see his "before" and "after" shots with his helmet. We are excited about the progress that has been made. You can read more about the helmet therapy at the Cranial Technologies website.

October 2001
We have graduated from the DOC Band! (helmet therapy) On September 24th, Noah went in for his exit casting which shows us how much his head changed over the course of his therapy. Noah keeps grabbing at the top of his head and playing with his hair, almost as if to say, "Hey, something's missing!" Check out his new look in his updated Photo Album! You can read more about helmet therapy at the Cranial Technologies website.

Since Noah has begun crawling and using more energy, he is eating more (YAY!) and taking in more calories. We are taking a break from the feeding pump for two weeks to see how he does. Hopefully, he will not lose much weight and we won't have to start it up again. If you aren't familiar with a Mic-Key (Noah's feeding tube port) or haven't seen Noah's, follow this link to see a picture of another child's button. Alex's Mic Key Button

Noah is drinking from a sippy cup! Sunday evening October 7th, he picked up a sippy cup while he was playing his kitchen cabinet. His mommy grabbed really quick and put soem milk in it and gave it back to him. He drank from it and smiled at me like he'd been doing it for months. Noah is also beginning to chew some and take pieces of mushy veggies and other toddler foods such as grated cheese, graham crackers and Cheerios�. His favorite foods are macaroni and cheese, sweet potatoes, bananas and green beans. We are completely amazed everyday because he is always doing and trying something new!

He had his first accident at the end of September. He slipped and bumped his head on the coffee table. He received a small blue bruise on his forehead. And although it freaked mommy out, she was delighted that he was standing and had a normal toddler accident!!!

Noah really enjoys walking with help from mommy and daddy. He loves to move and play. Crawling around the house is a great past time, but he prefers to "walk" even more. In physical therapy, he is learning to cruise the furniture (prop up against the couch and move around the outside of it.)

November 2001
Noah is doing something new everyday. On Saturday, November 3 he climbed up the ottoman in our living room. He can cruise around the length of our sectional sofa and get up and down from a standing position with great ease. We are taking a break from the feeding pump for another two weeks to see how he does. He lost six ounzes last month, but he had a cold and started crawling. Hopefully, he will not lose much weight and we won't have to start it up again. He is eating very well now. If you aren't familiar with a Mic-Key (Noah's feeding tube port) or haven't seen Noah's, follow this link to see a picture of another child's button. Alex's Mic Key Button

Noah is drinking from a sippy cup! Sunday evening October 7th, he picked up a sippy cup while he was playing in his kitchen cabinet. I grabbed it really quick and put some milk in it and gave it back to him. He drank from it and smiled at me like he'd been doing it for months. Noah is also beginning to chew some and take pieces of mushy veggies and other toddler foods such as grated cheese, graham crackers and Cheerios�. His favorite foods are macaroni and cheese, sweet potatoes, bananas and green beans. We are completely amazed everyday because he is always doing and trying something new!

Noah really enjoys walking with help from mommy and daddy. He loves to move and play. Crawling around the house is a great past time, but he prefers to "walk" even more. In physical therapy, he is learning to use a walker, although he isn't quite strong enough to push it by himself.

December 2001
Noah is 2! He developed an ear infection on his birthday so we put off his celebration until after church on Sunday, December 9. We had planned to take him to the Palm Beach Zoo, but because of his ear infection we haven't been able to go yet. He also had a party with his Mammy and Aunt Gypsy (Aunt GiGi) over Thanksgiving and loved ripping the paper off his presents. I took plenty of pictures and will get them on the web page as soon as possible!

Noah is into everything now! We have waited for this for so long and it is so wonderful now that he is so mobile! Noah wants to climb, crawl and loves to walk with help from Mommy and Daddy. He is doing great in physical therapy and even has a little toddler-sized walker he is using to get around in the house.

We went to a nutrionist after our Thanksgiving trip to Georgia and learned a lot about why Noah isn't gaining weight. We have supplemented his foods with different fat and calorie boosters such as corn oil, half-and-half, cheese and gravies. We will do this for a month and go back for a weight check. Then we will begin the transition to decreasing the nightly tube feeds.

Noah started going to the ARC Toddler Center in Royal Palm Beach on December 11. The Toddler Center is an integrated special needs day care facility that has about half of its enrollment as special needs children. Noah goes three days a week and continues to get physical, occupational and speech therapies on the other two days. He made the transition well and enjoys the activities. At the ARC he does crafts, has "circle time", sings and participates in off-campus field trips. Last week they went to see Santa at the Mall at Wellington Green, a new mall in our area. He really didn't care for Santa. :o)

Therapy is going well. Noah is self-feeding with a spoon! He enjoys doing it but loves an audience also so we have to be a little strict with how much we let him play at meal times. He is also doing great using an open top cup. He can take about four sips with the cup at a time. He still uses a sippy cup for most of his liquids though.

February 2002

Hello everybody and Happy New Year!

So much has happened since Christmas! I did have to move Noah's site again because my scrapbooking site, Remembering Your Baby~An Unofficial Guide to Scrapbooking for Bereaved Parents, is getting a lot of hits and that was causing a problem with the server as a free page. One day I hope to get my own domain, but we will have to wait for the next "gift-giving occasion" for that! :o)

Noah is doing fantastic! He has gained one pound and ten ounces on his high fat diet since we starting seeing a nutritionist. He loves to eat (Chandler's and Carter's both love to eat, so he didn't have a hope in that department!) and is self-feeding with a spoon pretty good now. He eats almost anything we give him (mostly table foods now, mashed with a fork). We have decreased his night feedings from 16 ounces of Pediasure� to 12 ounces.

He is still attending the program at the ARC Toddler Center. We have a field trip coming up to park for "all kids", one that allows children with special needs to participate. I am very excited about that and plan to take lots of pictures while we are there!

Noah's progress in physical, occupational and speech therapies is still amazing us as well! We ordered a walker for him this week and as soon as it comes in I will get pictures up for you all! He walks pretty good on it, but is still having trouble steering. His physical therapist assures me the walker we ordered will be easier than the one he is using now. We have started taking it to church with us and he also uses it to get around at the ARC. Noah has a left-side weakness that goes throughout his body. We are working in all of his therapies to make his left side stronger.

Noah has really started to increase his vocabulary, both through words and sign language. He signed "give me" and "eat" for the first time this week! We are currently working on the signs for "eat", "drink", "give me" and have started introducing "please". He says "mama", "dada", and "more". He has the beginning sounds for "ball" and "book".

Music is a very big part of Noah's life. He loves to hear people sing or listen to music either while playing or in the car. He really doesn't care for "Twinkle, Twinkle Little Star" and we don't understand why. He gets very upset if that song plays from his tape, if he hears someone sing it or if someone even HUMS the tune! He does prefer fast beat music, however, with lots of drums!

March 2002
Hello everybody! We have so much to share this month!! Noah is self-feeding very well now. He gets tired and can only feed about half of his meal, but he does really good for the first half of the meal.

He is also drinking from an open cup. Again, he gets tired about half way through (he drinks about 1-2 ounces. He is totally off the bottles!

Noah still loves Elmo and has starting watching Sesame Street on TV. (Before now, he preferred the Today Show and other news programs. LOL) He is starting to play with his Elmos and asks for them.

WORDS: mama, dada, Elmo, more, ba (ball), b'nana (banana), bu-bu (book)
SIGNS: all done, eat, give me
LIKES: feeding himself, climbing, music, walking, swinging, books, balls
DISLIKES: Twinkle, Twinkle Little Star, being told NO
FAVORITE SONGS: Itsy, Bitsy Spider, The Wheels on the Bus

May 2002
Noah has been sick this month and has lost weight. We went back up to 16 ounces of Pediasure� at night through his feeding tube. I am feeding him most of his meal right now (even amist his protesting ... he wants to do it himself!

The trip to the "all kids" park was a lot of fun! We did take pictures and I hope to be able to add those soon (I have to finish the roll of film first!)

On March 2, 2002 Noah walked from his high chair to the bathroom using one hand! (approx. 25 feet).

He was very shaky but he wanted to do it so badly. He even reached out for the door jam at one time but decided against it and did not take it!

That was very exciting. By the time he got to his bath, he was exhausted, but he knew he had accomplished something great!