RAISING JOEY

Aiden is coming!

This is Jessica’s sister-in-law Stephanie. I just wanted to let you know that I just heard from Jessica and she is at the hospital. She is contracting every 2-3 minutes but is only a centimeter dilated. They are going to be doing a c-section at 10:00 pm Eastern. So Aiden will be here very soon!!

Audiology appointment

Yesterday Patrick and I took Joey to ANOTHER audiologist for a third opinion to see if he needs a hearing aid or not. This one looked at all the previous hearing tests he’s had done including the results from the sedated hearing test done back in June after the ear tubes were placed in his ears and the fluid was drained.

Like we heard before, his hearing loss is neurologic and right on the boarder of mild to moderate in his left ear. BUT unlike all the other audiology appointments, this lady took the time to draw out on a graph what Joey CAN hear and what he CAN’T hear.

She also made a simulation on her computer of a restaurant and all the noises that go with it. She played it at a “normal” person’s hearing and then at at what Joey can hear. I was quite surprised at the difference!

Afterwards, she sat and talked with us about her opinion and she said if Joey was her child she would try a hearing aid. She said, if he doesn’t accept an aid in his ear, then we can try again in a few years. Thankfully his right ear has perfect hearing, but even with that, his speech can be affected, which it obviously is.

So now we’re in the paperwork process and hopefully should have him a hearing aid in the next month or so! The cool thing is, the insurance will cover it fully and we even get a warrenty with it for when he decided to rip it out and toss it across the room, LOL!

Ear molds

Poor Joey, today my mother-in-law and I had to take him to get ear molds for his FM hearing system for school at the audiologist’s office. The process itself took less than 15 minutes to get those molds made but it felt so much longer! I had to sign/sing the alphabet and sing BINGO the whole time to keep Joey halfway calm. Poor little guy screamed and cried! The cool thing is that the FM speakers (they’re pretty much are hearing aides) are going to be blue and yellow swirled (Down syndrome awareness colors)!

So, when school starts on September 3rd, Joey will have fancy new ears to help him hear better in school! His teacher will wear a wireless microphone that will transmit her voice directly into Joey’s ears.

As for hearing aides to wear 24/7, we can’t get audiologists to agree that he needs them. One says yes, the other says no. So a week from today, we’re going to see a THIRD audiologist to get her opinion and go with what she says…

Wordless & Special Exposure Wednesday

For more Wordless Wednesdays, go visit 5 Minutes For Mom!

For more Special Exposure Wednesdays, go visit 5 Minutes For Special Needs!

Dear Mr. Carpet Guy

When I came into your store on Saturday, I was really thinking about buying carpet from you until I explained to you that I wanted a softer carpet that would be good for my son & his sensory problems, and you became interested. I thought you would be a nice, understanding person. So I told you how Joey has Down syndrome and there’s a lot of textures he doesn’t like and how a softer carpet would be best for him.

You automatically thought that Joey needs to be shipped off to a “special school” and a “home”. When I tried explaining you to how now-a-days that’s not what happens to our kiddos, you looked at me like I am the worst mom in the world and that I have two heads.

Let me tell you one thing, Joey will NEVER go to a “home” and will NEVER go to a “special school”! Joey will be included in a regular classroom in the public schools like other children.

Times have changed Dude, get with the program. Did I mention that you lost a sale and I’m not going to buy carpet from you now even though you had the cheaper carpet and could install it the soonest??

Finally!

Well, wouldn’t ya know it?! The gluten free diet is REALLY paying off! Joey hasn’t had a BM blowout for almost the past week since we started! It was crazy, within 2 days of starting the diet, we could tell a huge difference with his BMs and now he’s having formed poop (just what you wanted to hear, huh?).

Anyways, I’m ONE HAPPY MOMMA!

He’s still having major sensory issues but he’s more happy than what he was on the Pentasa medication.

As for me, I’m still here, still pregnant, LOL! My c-section is scheduled for September 14, so as long as Aiden can wait, that will be his birthday!

We’re in the process of packing to move to our new house but unfortunatly, we’re still waiting on the final word for our mortgage so if you could please say a prayer that everything falls into place, that would be great! Our contract says the latest we can close on the new house is August 21, so I really hope we hear something soon!!!

Leah’s birthday bash

We decided to celebrate Leah’s birthday one month early since we’re in the process of buying a house, moving and having a new baby all in the next month. I didn’t want her birthday to go unnoticed and I wanted her to have her own special day so we invited just our family and a few friends to join us in the celebration!

Here’s some pictures from the party! Enjoy!

Make an on-line slideshow at www.OneTrueMedia.com

Gluten Free Day #2

We managed a completly gluten free day yesterday! PHEW! At least I didn’t screw up any of his foods, LOL! Leah and I made a shopping trip yesterday and Ocean State Job Lots actually had an awesome supply of GF pastas and baking supplies so I bought pasta, GF baking flour and some sort of hot cereal for his breakfasts.

So for dinner tonight, Joe-Joe will be trying this one…

Gluten Free Mac & Cheese

Ingredients:
8 oz. of Velveeta (add more if you want it really cheesy)
¾ of a bag of gluten free elbow macaroni
3 tablespoons butter
¼ cup milk (more if you want it really creamy)

Directions:
Make elbow mac and drain. Add other ingredients and mix until melted.

Gluten Free day #1

Since today is our first day going Gluten free with Joey, I thought I would share a fun playdough recipe with everyone since I found out last night poor Joe-Joe can’t even play with the old school Play-Doh brand playdough!

Gluten-Free Play Dough
Ingredients:

½ cup rice flour
½ cup cornstarch
½ cup salt
2 teaspoons cream of tartar
1 cup water
1 teaspoon cooking oil
Food coloring, if desired

Directions:
Mix ingredients. Cook and stir on low heat for 3 minutes or until it forms a ball. Cool completely before storing in a sealable plastic bag.

The latest…

So taking Joey off the Pentasa (medication for his colitis) has helped with his behavior. He’s been slowly coming back to the old happy Joey and this momma couldn’t be happier! I left a message for Joey’s GI doctor, Dr. Z to call me yesterday and she called me back this morning and we’ve decided to put him on a Gluten Free diet.

I’m just so happy and grateful that a lot of his behavior was caused by his medication and not something neurologic!!

She said the odds of him having both Lymphcyctic Colitis and Celiac Disease are very high. And after reading what I have about both LC and CD, and Dr. Z said with the number of kids who have Down syndrome and Celiac are higher, it sounds like that’s what we’re dealing with. She said even though the Celiac didn’t show up when we tested him via Colonoscopy, it doesn’t mean he doesn’t have it. She said it’s getting harder and harder to diagnose Celiac Disease. So, Dr. Z said, we might as well say he does have Celiac Disease but we might wait a couple of years to test him again.

We’re going to go ahead and start him on a Gluten Free diet. My hopes and prayers are that going Gluten Free will not only help him stomach problems but also help with his behavior and maybe even his language.

Dr. Z is going to have one of CCMC’s Nutionists call me to make an appointment for us to learn more about Gluten Free diets.

We’re also still not ruling out the Sensory Processing Disorder since he’s always been such a sensory kiddo, so when he goes back to school in September, he will be evaluated for that.

So much to do, so little time. I’m 33 weeks pregnant, we’re in the process of buying a house, gotta switch Joey to a Gluten Free diet, am I missing anything???