April 30, 2012

Preston, Elizabeth, Carson, and Kellen had many prayers answered on their trip to St. Louis. Carson and Kellen both did extremely well on the way to and from St. Louis. Particularly with Carson, it can be really challenging to keep him happy and breathing well while he is in the car seat. Carson had several doctor’s appointments. They all went well. They adjusted some of his medications, looked at his trach, and got blood work. While they were waiting for the neonatologist appointment, Elizabeth found another bump on Carson that is different than the others. The dermatologist believes the other three are hemangiomas. However, this one is near the surgical incision site and is quite different. The doctors were more concerned about this one and decided to get an ultrasound and further lab work to evaluate to make sure the mass was not recurring. The ultrasound results were inconclusive. Dr. Cerny, the neonatologist, feels confident it is not anything alarming. Dr. Yang, the surgeon, was unable to see it while Carson was in St. Louis because of his surgery schedule, but he is waiting to decide how to proceed until we get his tumor markers back. It will take a few days for us to get the results. For right now, none of us are too concerned and we will just keep right on praying.  Kellen is 14 lbs 6.5 oz (little guy lost weight, but still is great on the growth charts). Carson is 15 lbs 14 oz and keeps growing like a weed in a flower garden ;  ). Just recently, Kellen has started to eat like a champ, so we fully expect him to close the gap soon as he doesn’t like to be referred to as the little one : ) All in all, a wonderful week for the Clarks. Continue to pray for Carson’s healing in God’s timing. I know Preston and Elizabeth will be extremely excited to see all the medical equipment go and the day when it is not anymore challenging than putting two boys in a car seat and getting the diaper bag for a trip. Carson did get rid of one of his machines after his appointment, which is the first and hopefully the others will follow soon. It was his apnea monitor and we are all super excited!! Almost to six months and we just pray the next six months bring many improvements.

The most special part about hearing Carson make sweet noise is that he didn't make any noise until he was about 3 months old as a result of having a tracheostomy. With the Passey-Muir valve, he can push air through his vocal cords, and we just love to hear him "speak". He also only has one vocal cord that functions due to the mass and subsequent surgery, so we are just ecstatic with the music he makes.

Music to our hearts!!!

What a week!!! Carson and Kellen did very well!!! Carson seems to be talking more every day, and we hear Kellen’s sweet laugh on a regular basis now. We feel truly blessed to have these boys in our life.  This next week will be a true test of our endurance. Thursday, both boys have appointments in St. Louis. We will make the three-hour trip and then have 5 different doctors’ appointments for Carson and one for Kellen. It should be interesting to see how long the boys’ patience lasts (not to mention Mommy and Daddy). Then, we get to survive the three-hour trip back. Every trip looks like we are going to be gone for a week at a minimum due to the amount of medical equipment Carson needs. Be praying Carson and Kellen tolerate the long day as well as possible. It is a blessing to be able to see all the doctors at the same time but will make for a long day. We are really happy we will be seeing dermatology to discuss the three bumps Carson has on his chest, and ENT, as his tracheostomy has a lot of granulation tissue growing around it. Other than that, we are blessed!!! We continue to pray for Carson’s healing and know God is working in miraculous ways. 

This week has shown some progress, which is very encouraging for all of us. Carson weighs 15 lbs 3.5 oz and Kellen weighs 14 lbs. Carson’s pediatric trach came last Tuesday. It is slightly longer than the neonate trach he had. When Carson saw Dr. Costa, it was found he had more tracheomalacia (floppiness to his trachea resulting in the trachea closing off with each breath). After we changed to his longer trach, Carson seems to be doing better. He has rested really well and the last few days has required about 1 liter less oxygen on his trach collar than he has in the past few weeks. We were all encouraged with this. In addition, Carson and Kellen seem to have taken off with chattering and talking to anyone that will listen. It has been music to all of our ears. We continue to ask for prayers for protection over Carson’s little brain and body. There continue to be many situations that could be problematic for him, and we just pray for wisdom for all that are involved in his care to keep him as safe and healthy as possible. Carson has developed another bump on his chest that doctors believe is a hemangioma. His tumor markers are down, but it is concerning to us that he now has three of these bumps on his chest. We have a nursery check-up at the NICU at Cardinal Glennon in about 2 weeks for Carson and Kellen. We plan to talk to Dr. Cerny, the neonatologist, about the situation with the bumps. So far, no one is exactly certain of whether to be concerned or not. From our research, if they are hemangiomas, it really isn’t a big deal unless they continue to grow in size. Every day has brought blessings from these two boys and we continue to be completely amazed at all God has given us. Thank you again for all your prayers. We also want to wish the boys' great-grandmother Florence Hermesch a happy birthday! It is our first without her here on Earth, but we know she is praying intently in Heaven.

Happy Easter and Happy 5 months!

Happy to Easter to all! God has blessed us so much with the gift of His Son’s life and saving us all from sin. God has blessed us above and beyond all that with our two sweet little boys. We are so grateful. We had a wonderful week and weekend with family. It was a blessing to have Clarks and Bunches in Dexter for our Easter celebration. Carson and Kellen got to start the tradition of finding their Easter basket with a little help from Mommy and Daddy. Tomorrow, Carson will make another long trip to St. Louis to see Dr. Yang, the physician that removed the cervical teratoma. We are praying it is an uneventful 3 hour trip to and from the 10-15 minute doctor’s appointment. Gotta love these long drives!!! We did get Carson’s tumor marker results back and they were excellent down from 94 to 54 (the lower the better). We are still waiting for the longer trach. Hopefully, it will help prevent Carson’s trachea from collapsing with each breath and allow us to wean us oxygen. We just weighed the boys and Carson has hit the next milestone...he is now 15 lbs and Kellen is following at 13 lbs 11.5 oz. We are truly proud of these boys! Just in the last week, Carson has seemed to really start smiling and talking more! His voice is truly music to our ears...it is hard to explain how wonderful it is to hear his voice when we did not get to hear anything for the first 3 months of his life! Thank you God!

(I'm trying to figure out how to upload a video but I'll have to keep working on it...so for now...here are some pics)

Look what the Easter Bunny brought ; )

Hunting for Easter baskets!

Cousins!

Aunt Amber's first time to hold me

I just want to eat some candy!

Mr. Kellen

5 months old

I found my basket (with the help of Poppy!)

Just hangin' out....

Happy Easter!

Love our country boys!!

Carson and Kellen have had another good week! Carson weighs 14 lbs 5.5 oz and Kellen weighs 13 lbs 8 oz. Carson is still blowing Kellen away with the weight gain challenge, but both are gaining which is the important piece. We are trying to use Carson's passy-muir valve more often, because it normalizes his breathing and to help with speech development. However, it can't be worn while he is sleeping so it seems to go off and on since Carson is the king of cat naps. First Steps (which is Missouri's Early Intervention Program) started with Carson this week. He will receive Speech and Physical Therapy once a week. Carson has not been doing very well with a bottle so we are going to attempt rice cereal and see if he does any better with that. It would be very nice to get some sort of nutrition by mouth so the G tube can be removed. And our amazing pediatrician stopped by the house yesterday to take a look at a rash Carson had as well as a small bump on his chest. The pediatrician thought the rash was just heat rash, but gave us something to prevent yeast, because of the high humidity and heat being blown onto that area via the trach collar. He believes the bump is a hemangioma... Carson has one other one on his bottom, so we will just keep watching those. They are benign unless they continue to get larger and troublesome from the standpoint of size. Typically, they grow for the first year of life, so for right now we are just going to watch it. Carson has had his tumor markers drawn, but we still don't have the results yet. Once we have those, I think we will all feel a little better about the nodule on his chest. A praise...Kellen finally pooped with only assistance from apple juice (we've been having several day periods without any bowel movements)...I know, I know...the things we get excited about : )

Prayer requests...
1) Improved feeding by mouth for Carson...so we can eventually remove the Gtube
2) Continued healing of Carson's body...lungs, the respiratory infection, and no tumor recurrences
3) Guidance of the therapists that will be working with Carson to find ways to help him and us as much as possible
4) Improved digestive tract motility for Kellen : )
5) Continued prayer for good nurses for Carson

Telling Mimi a story...

In honor of Great Grandma and Grandpa Hermesch
and Uncle Ferdy

Proud Daddy

Carson: "What just a minute Mom...I'm not ready"
Kellen: "Let's just get this over with"

Mimi and Papa Clark

All smiles...He wasn't as happy after the KU win last night!