9 Months!!

Wow...it is hard to believe that the boys are 9 months old today! How times fly and it does my heart good to see how far we have come! At times, it feels like the progress is slow if not at a standstill but when I look back to even 3 months ago, I am amazed!!

Kellen is now mobile enough to be really dangerous! He is crawling and pulling up on anything he can get his hands on. The problem is that he is NOT so graceful with his descent...sometimes falling like he is a tree trunk : ) Bruises, bumps and scratches...here we come! Kellen still is not the greatest eater but is doing better and continues to gain weight. Praise the lord! He continues to show his personality, babbling non stop ("Bubububu...byebyebye...bababa...Mamama") and has taken to growling recently. I can't lie, this little boy is a bit spoiled and knows someone will come if he starts whining or whimpering : ) He continues to make us smile with his giggles, laughs, and other antics!

Carson has also made big strides...he is now getting really good at sitting up and just recently has shown a lot more interest in standing! He is also starting to make more sounds and voice fluctuations. He continues to be very attentive to things going on around him. He is a pretty happy boy! We continue to persevere on his feedings by mouth, although this is the one area that has been slower to progress. He only requires supplemental oxygen when he is sleeping now and this is only a minimal amount. His grins and laughter is contagious and brighten all of our days! We will go back to see some of the doctors at the end of this month.

Thanks again to everyone for the continued prayers! They have really helped to get us all to this point! Blessings to all as the summer comes to a close and school starts back up again!

Knocked the bear down trying to get away : )

Our sweet Kellen

"I'm coming Mom"

Little toes

So funny!

Happy boy!!

Coming over the couch (Carson wanted me to tell everyone that he was sinking into the middle of the couch...Kellen isn't really that much taller : )

Playing ball with Mimi & Papa

Our nightly walking crew : )

Playtime!

Kellen gained weight!

First praise...Kellen gained almost half a pound this week! We were all SO excited for him! hmmm... wouldn't it be nice to always be this excited about weight gain : ) Kellen seems to be taking the bottle a little better now. So maybe the steroid did help with the fluid in his ears.

We spoke with Carson's main surgeon, Dr. Yang, this past week and he is also going to do some research as to what the best form of treatment is for the scar tissue around the epiglottis. Carson's lab work came back and his tumor markers were unchanged. We will continue to monitor these but there are no concerns at this time. We just continue to pray for guidance in Carson's care. We will return to see his ENT in a couple months and will hopefully have some more answers and know what the plan is. Otherwise, everything has been pretty status quo in the Clark household. We continue to get laughs and so much joy from the boys' laughs, smiles, and other antics. It is never a dull moment around here! Carson is more and more expressive and is making new sounds all the time! While Kellen is just about to be really dangerous moving around, climbing, and getting into everything!

Yeehaw!

Enjoying a small piece of cake : )

Sarah & Mom made this for us while we were in STL

Laundry basket fun!

Cousin Darrin! So good to see family!

Aunt Alice's first time to hold Carson!

"Look what Drew showed me!"

That contagious smile!

Lindsey & Christi came to visit! It was SO wonderful!

The boys LOVED them!

Bronchoscopy results

First, thank you all for your prayers and support for Preston, Liz, and our families. We are so blessed and praise the Lord for all He has given us. Unfortunately, the news after the study of Carson’s trachea and lungs was disappointing and not what we were expecting. The extent of the tracheomalacia (or floppy trachea instead of a rigid trachea as it should be) is more severe than they initially felt four months ago. As a result, that alone will prevent Carson from having his trach taken out or decannulated anytime soon. However, the most disheartening news was that there has been an increase in scar tissue around the area of his epiglottis (this is higher up and one of the reasons he has the trach to bypass the constricted area). This particular area of scarring is apparently something quite rare and the doctors have very little experience with it. They are quite concerned that it may not respond well to surgical removal. The greatest concern is this MAY ultimately result in Carson having to have a trach for the rest of his life. This had never been discussed before and it was always felt the trach was temporary, at most a couple years, before today’s news. This is extremely hard as there are many limitations that come along with a trach and result in a much different life than we might envision. They believe they would like to try surgical procedures using lasers and removal of the scar tissue, but it will require many surgeries and be staged over the next several years. They are unsure of whether this will be successful. We are all quite sad about this news but know God has a mighty and wonderful plan for Carson’s life. Whether God chooses to heal Carson completely or allow us to see how He will work through any limitations Carson may have, we know he is in control and will give us the strength and grace to take one day at a time. Most assuredly, we are praying for a complete healing of Carson and another miracle as his life is surely a miracle. Please continue your prayers for Carson, good nurses to care for him as this will be much longer term than we expected, and faith and strength for Preston and Liz in this difficult time. As always, we celebrate the miracles we have witnessed and could not be more grateful for the blessings God has given us through these two sweet boys, Carson and Kellen. Life is truly a most precious gift!

On the positive side...

1) Carson was given a larger size tracheostomy tube which will hopefully ease his work of breathing and allow him to come off oxygen even more.

2) Our main day nurse is moving but we have already found another person who we believe is going to be an excellent fit during the day...we were all VERY excited and thankful!

3) And most importantly....we have Carson and the gift of his life is worth every tear and every second of grief. His smile brightens even the most gloomy day!

8 Months!

Another wonderful week in the Clark residence! We've had lots of fun visitors the last few weeks! Carson’s bronchoscopy is Wednesday. Please be praying for encouraging news with increased healing of his chronic lung disease and tracheomalacia. It will be a very long day for Preston and Liz as they will be leaving Dexter at about 4:30 am to get to St. Louis in time for the study. Then, it will be a full day in St. Louis for the study and recovery. Pray for their strength and faith in God’s plan for Carson and their lives. We all are praying for the day when Carson no longer needs his tracheostomy and oxygen. He has continued to do very well with weaning on his oxygen. The passy-muir valve gives some back pressure that helps oxygenation, so with the valve, Carson rarely requires any supplemental oxygen. However, he still needs about ½ to 1 liter of oxygen when he is off the valve. We just pray for continued healing, patience, and faith for all of us as we wait on God’s timing.

Preston and Liz took Kellen to the doctor last week to try to figure out why he is not eating well from a bottle. Several individuals recommended checking his ears. Kellen did have fluid behind his ears, and the doctor felt that might be causing the difficulty with drinking a bottle. They placed him on a short course of steroids to try to alleviate the pressure behind his ears. As of yet, it has not made a great difference in getting him to drink his bottle. We continue to pray for wisdom and keep trying to get him to eat more. He continues to be the tall, lean one while Carson loves packing on the pounds.

Thank you for your continued prayers. As soon as we have information from the study that will be completed at Cardinal Glennon, we will post an update.

Mems and Grampe Bunch

Reading books with cousins Athan and Tseri

"I love you Daddy!!" ...just melts my heart

8 Months

What a handsome fellow!

I'm sitting up so much better!

Sweet smiles!

8 Months!!

I think Carson saw a ghost : )

Auntie Danielle came to visit for several days!

Cousins August and Bennett and Carolyn (Kellen had just laid down for a nap)

I want outside!!

Cool dude!!

"How you doin'??"

Uncle Craig and Aunt Rhonda came to visit!!!

Cousin Margo and Aunt Amber have been big helpers this summer!

Just hangin' out in the tub...Bath time is SO SO SO much better now!

Check out my two teeth! Love, Carson

"What'd you say Mom??"

These are my two teeth!

Happy Fourth of July to all!!! First, we want to say thank you to all those that have sacrificed to ensure we have the freedoms we are blessed with in this country. We cannot begin to understand the degree of the sacrifices made but wish to express our deepest gratitude. Although, our country is not perfect, we are very thankful to be put down in this corner of the world.

As some of you may be aware, we had some DRAMA this past weekend. We have been blessed with two wonderful nurses during the daytime and truly thank Jesus every day for them. However, our nurse at night has been a very different story. We have prayed for this situation and ultimately, it came to us asking to not have her back to care for Carson. She had been here every night for almost two months. As a result, we are asking for prayers to guide a caring, compassionate, competent nurse to us to help care for Carson at night. We pray we can trust this nurse enough to be able to at least sleep at night and not have to have someone in the family awake with Carson 24 hours a day. This is a very difficult schedule to maintain particularly while also caring for Kellen. God knows best, and we just pray for His guidance.

Kellen continues to be on a strike against eating. We aren’t sure, but we think he is a little worried about weighing too much to be a horse jockey and so has decided to refuse to eat. The last we checked with the dietitian at Cardinal Glennon, he was 50% for height, 5% for weight, and 3% for weight/height. He used to be much better than this for his weight. We have tried everything we can think of to get him to eat, but he has us puzzled. He will not eat while he is awake and so we must wait until he is asleep to try to get fluid in him. At times, he will eat very well but then go right back to not eating. We just ask for prayers as we cannot see any visible signs or reasons why he won’t eat, so it makes it very difficult to resolve. Other than that, he is doing so well. He is sitting up all by himself, loves to walk around with Daddy and Mommy’s help, and talking up a storm. Just in the last few days, he has started non-stop ba-ba-ba-ba, bu-bu-bu, bye-bye-bye, or ma-ma-ma or da-da-da. I think bu-bu-bu is his favorite. It is truly precious!!!

Carson continues to be a little fighter. He is on 1 liter of oxygen or less most of the time, but still does need a little oxygen to stay up on his saturations. He has two teeth to match his brothers. Both boys seem to be getting ready to cut more teeth, but right now just have the two. Carson is much more interactive than he has been in the past and continues to make great strides in his physical/mental developmental milestones. He still struggles with eating and has not made any progress towards getting rid of his G-tube. We continue to ask for prayers for his study on July 18^th when we will find out more about any progress he has made in regards to his chronic lung disease, tracheal malacia, and subglottal stenosis. The doctors will do a bronchoscopy, and the results will make a huge impact on the timeline of when we can possibly consider removing his trach. It would be absolutely marvelous if we could have good news or progress towards NO MEDICAL EQUIPMENT starting with the trach being removed!

Prayer requests:

1)   For God to guide us to a wonderful night nurse to help care for Carson

2)   Carson’s bronchoscopy July 18^th, for good news and healing of his body (particularly his lungs and ability to swallow and eat)

3)   Kellen to eat and be able to gain weight

Thank you all for your unwavering support and prayers. We hope you all are blessed for all you have done for us.