BIG 3!!!!! Happy Birthday CoCo!

Cohen is 3!!!!!!!!!!!!!!! Can you believe that? Time has gone so amazingly fast, yet sometimes I feel like he was born yesterday.

I won't go into a long sappy post about everything Cohen has taught myself and our entire family. I won't detail the changes my heart have seen in the last 3 years.

What I will say is all of our children are gifts from God. Cohen simply proved to me that God has a sense of humor.

In the last few months my sweet little scrawny baby has turned in to a messy, funny, and loving little BOY!

Thank you to all the family and friends that have stuck with us in this journey so far. Thank you for getting excited when you see him walk or talk. Thank you for laughing with us and giving him so much love and and attention. Thank you for loving us, even when things were dark and scary. You know who you are, and for you we will always be grateful.

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!

My Beautiful daughter and I

"The most precious gift From Heaven above Is the gift of a daughter For a mother to love."

Cocoa for CoCo! Happy 2nd Birthday!

Has it already been a month since Christmas?????? Time just keeps flying by! We celebrated Cohen's 2nd birthday on his actual day, December 23rd.

Our theme this year was "Cocoa for CoCo", my mom has always called him "baby CoCo" and it has stuck. Now we have dropped the "baby" but kept the CoCo. My daughter Calee had the idea to have a hot chocolate bar and cocoa theme. It turned out cute. Thanks to all our family and friends that were in attendance. After everyone left I just sat in awe of all the loving and wonderful people in our lives. We are so lucky.

Here are a few pics from that morning! Thanks to my friend Lacey for taking all the pics so I didnt have to!!!

Cohen rode around to see everyone

Emily and EC with Cohen and I

Hello!

Trying to get a pic of the NICU Bffs

Sara and Julie

Calee with AG

Always my helpers, Calee and Bailee

Max w his Dad Scott

AG and Sam

Nanny and Mema

Daddy and Coco with Digger

Phyl Ferg, Lanae, Samantha

Ames and Grace

Add caption

Em, Stacy and me!

Jenny and Ahmmmy

Bruce, Sara, and Scott

Cohen and his BFF Drake

Bruce and Sara

FOOD!

Hot Cocoa bar

CoCo Cake

What's going on with us!

Hi All! I have been hoping to find time to catch up and give you all our new information on Cohen, and the rest of us! We ended up cancelling Cohen's swallow study in early January. He was just so sick and would not have done well.
SO, basically our goal has been to keep him "well" and healthy until out Jan.30 trip to Cincinnati Children's Hospital. We have just less than a week until we leave. We will spend 6 days there. As of today, Cohen is pretty well, still battling a cough and runny nose, but nothing too bad. Calee and Ames, on the other hand, are so sick. My poor older babies rarely even get a cold, and they have both been knocked down all week with flu like virus. Calee's lungs showed a small pneumonia, and Ames has double ear infections, just to top it off! They are so pitiful! Hopefully we are on the uphill swing now.

We are keeping Cohen on "house arrest" until we leave. Just to try and get him in the best shape possible. I am so excited and also a nervous wreck about all the testing and him being put under anesthesia. But I know we will get through this and hopefully get more information on how to help Cohen's day to day life. That is our goal!

Usually, Calee and Ames are running circles around Cohen, and he is wanting to be held of just sit and watch, when he's not feeling well. This week, Calee and Ames have held down the couch, and Cohen has just terrorized them! he carries them toys and books and demands "read Calee" or "play Bubba" to Ames. Its been so funny.

I will do a detailed update when we return and hopefully a few posts in between. I will "tweet" while were there, so if your interested and want to follow me on twitter my name is davisbryant

Love and blessing upon you all!
Christin

CoCo LOVES talking on the phone to LuLu.......