Fall Update?

I am beyond a terrible blogger. I really DO think about updating and writing a huge post about all that is going on with Cohen and the rest of us, then..........life just happens!

Cohen is doing amazing. I am talking car stopping, chart topping, beyond our wildest imagination amazing. Not only is he WALKING, but add RUNNING to the list. He climbs, jumps, falls, falls, falls, (you get the picture) and continues to jump back up and go again. He works so hard to keep up with all his buddies and mostly his big brother and sister.

He does continue to wear his braces (AFOs)  for support and control, but they are second nature to him now. We also still feed through his G tube 3 times during the day. We are trying to wean him to 2 times a day, but this is pretty tough. He loves his "tubie" feeds and begs for the 3rd per day. On a good day, he eats like a almost average picky toddler. On an off day he eats zilch. Still something we are working on and will be working on for a while. We can see the light. That is all that matters.

Here are some recent pics of all the kiddos. I would promise you that I will update the blog more often but who am I kidding?????

Typical Bryant kid pic....

Much better!

Cohen loves his Calee

The boys with BFF Drake

Told you he loves her....

 

Ames is so funny. Love this pic.

 

Calee and Bailee swinging the boys.

Life long BFFs. Such sweet girls, even now as TEENAGERS!

A little more talk, a LOT more WALK!

Cohen is just blowing and growing everyday. So excited to show you this video! Please ignore my loud voice!!!

Mother's Day=)

One of my favorite photographers, (Jadie Thomas) offered a great deal on Mother's Day mini sessions. Since it came a flood that day, we had to reschedule. I am SO glad we did. I have never done pictures with just me and the kids----I am usually much more worried about getting just them=) I am hoping to do this every year, a new Mother's day tradition! Here are a few of my faves.

Everyone is smiling?!!! Miracle!

My Sweet boy is getting so big.

My almost teenager!

My wild man

Almost......

Cohen is SO close to being a full fledged walker. He takes several steps, and runs like a wild man with his walker. This picture of him cracks me up. Please note his feet are several inches off the ground and he is using this thing like a jungle gym. He continues to amaze me every single day.

2 months later.....

Wow.....2 months since I last updated the blog! I am truly a slacker. It just shows how quickly time flies.

First things first, we did get final reports from Cincinnati. Basically, we found out Cohen has more lung problems that we thought. We knew they were weak, but not to this degree. More testing will be done next month in this area. For now, he is on 4 daily lung meds that are controlling things really well.

As far as his G tube, we are doing intensive feed therapy trying to wean him and hopefully, at some point he will be fully an oral non-tube eater. It's a slow process. He still aspirates some, but not near as much. He has alot of learning to do. I have faith he will, because if nothing else he is the most determined person I have ever been around.

Determined.......Cohen has really shown us his personality the last couple of months. Now that his ulcers are not being aggravated by the G tube he has no pain when tubing. (A HUGE HUGE RELIEF) He literally is a different person. He is chatty, funny, laughy, and smiley. I can already see strides in his development.

Cohen has had RSV recently and a bad cold all winter. He has been much better for a few days now, and I hope this beautiful spring weather can help him stay well. His fevers got over 105 and his cough was scary. So glad he is better. ER trips were becoming a little too normal for us!

All in all, we are doing well and hanging in there. Spring is usually not my favorite time of year, I struggle with allergies, but this year I am excited about it and can't wait until summer.

PS----Ames and Calee are doing great. Calee has started piano and is loving it, something she has wanted to do for years. A piano in our living room may be in our future! She also stays busy with dance and musical theatre classes. I loved having her on spring break last week. She is so good and helpful with the boys! Ames is growing and changing everyday. He seems like such a big boy lately. He still loves anything with tires, and is into firetrucks in a big way.

Hope all of you and yours are well. Thanks for reading and caring about us=) Love ya! Oh and here are a few pics from my phone, I need to get out my camera----have been slacking on that too!

Cohen and Ames at MDO

Cohen trucking down the hall with his walker

Piano lessons=)

Cincinnati

We are home. It was a amazingly busy week. We will get full reports from all the doctors and recommendations of treatments next week by Thursday at the latest. The only thing that takes longer than that is the genetic panel, which will be 4 weeks.

We saw over 20 doctors and had lots of testing and procedures done. Cohen did AMAZING after anesthesia, woke up like a champ with no trouble. I can't tell you the relief. It really makes me realize how much stronger he has gotten.

The Aerodigestive team, which was the main reason we went there, was made up of an ENT, Pulmonologist, and a GI doctor. They all 3 went in with  different scopes and looked at the entire airway, lungs, G tube site inside, stomach, and more.

Most of the news we got from this was really good. Cohen's airway has grown and is much closer to the right size, they downgraded him to a grade 1 stenosis, from a grade 4. So this is good. The left vocal cord is still paralyzed, and they do not believe it will return function. The right vocal cord is working hard to make up for both, which is great. He could possibly have surgery down the road (after age 8) if he has a problem with speech/sounds. At this point I don't think he will. He says so many words clearly now.

The lung doctor thinks he has a possible immune system disorder and lung disease. We will learn more about this when the tests of tissue and fluid they too come back. Hoping for the best.

The GI doctor, who was plain spoken and blunt (he was my favorite) said our G tube has bad placement, its too low in stomach,  and has caused ulcers, which is likely causing all the underlying pain we knew he was having. He changed him to another type tube and hopes this will help. If not, they can move the tube to another location......which we pray wont be necessary.

The great news we got is Cohen can start eating more, and drinking some. We know this will be a slow process, and he is starting more intense feeding therapy next week. We are so happy and hope he will learn to be a normal feeder and can remove his G tube at some point.

I promise to give more detail when we get back the final reports. Thank you to all that have called, text, sent cards, facebooked, emailed, etc. We love you all lots=)

Day One

We got through the first day! This really is something to celebrate. We went to lots of appointments and still had time to let Cohen swim this evening.

The appointments were good and very on time and organized. Alot of consults and pre-registering for tests tomorrow and Wednesday. He will have a Chest CT and Spinal MRI at 7 am. Then we meet with the Aerodigestive group in the afternoon.

We saw Genetics, Orthopaedics, Anesthesia, Speech Pathology and had a swallow study today. Poor Coco was worn out. So are LuLu and I. We have to be back at 6, so we are going to bed early.

It was a good news/not so good news day as always. His swallow study was much improved so I am THRILLED about that. Genetics results will take a while, but were promising. The ortho doctor gave us a completely different view than our other doctor. Still sorting that one out a little. We will get most results before we leave Friday.

I will try to update as much as I can this week. We will spend Wednesday and Thursday nights in the hospital so I am not looking forward to that. Thanks to everyone for the prayers and words of support. Love to you all!