Monday, July 2, 2012

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 18th 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 18th, 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.

Wednesday, June 20, 2012

I know this post is a little delayed but we just wanted to wish everyone a Happy Father's Day! I am blessed to have an amazing Dad and Father-in-law as well as a wonderful Daddy to my boys! I thank the Lord every day for knowing what I would need in the father of my children and he picked the most perfect person for Carson and Kellen! We had a wonderful weekend and made our first trip over to Mark and Amber's for a Father's Day meal. It was delicious!

The boys continue to do well. We are in the midst of trying to figure out why Kellen is not interested in taking much of a bottle. We don't know if it is just one of those phases or related to acid reflux or something completely different. But every feeding, a prayer is thrown up for him to take his bottle. He is just now started to scoot on his belly and is starting to figure out his walker.


Carson is really working on a couple teeth but still no breakthrough. He is doing better and better with his head control, sitting up, and rolling over. Eating by mouth is still a challenge but we just continue to work at it. Please continue to pray for complete healing of his little body!

Enjoy the pictures!




Thumbs up...I'm getting better at tummy time : )

Story time with Nana

Can you tell Nana is enjoying herself???

Mom and Dad ready for our first date night away since coming home! Thanks everyone for making it happen!

Carson in his swing for the first time

Kellen thinks he likes it too!

Thanks Meme and Papa for our swings!

Meme and Papa with their grandkids

Our first fight : )

A very proud Daddy!

Sunday, June 10, 2012

7 Months!!!



Maybe the most exciting news…Carson had a ‘time trial’ without oxygen on his 7 month birthday and he made it 1 hour WITHOUT any supplemental oxygen.  In the past he made it only a few minutes before his oxygen saturation fell below 90%. We were thoroughly impressed! We also received good news from his last appointment…the alpha fetoprotein (tumor markers) dropped from 22 to 15.  The chest X-ray also showed lung improvement overall but there was still some residual inflammation in his left lung, which may be from a slight cold he had or just from the damage caused from early on.  We just ask everyone, if you are so inclined, to really be praying in the next month for healing of Carson’s lungs and airway because the procedure scheduled for July 18th will play a role in determining when decannulation (removal of the tracheostomy) is scheduled. If the bronchoscopy shows healing and improvement, there is the possibility of discussion of decannulation earlier (not exactly sure of the dates). However, if he still has a lot of tracheomalacia (lack of rigidity of the windpipe), obstructions, and signs of lung damage, they will probably postpone any discussion of decannulation for quite some time. We received his surgery pictures from Dr. Yang, and they reminded us again of the TRUE and AMAZING miracle of Carson’s life and progress thus far and the power of prayer. We are praying for another miracle with the healing of his lungs and trachea. Thank you for joining with us. We know the reason Carson has done as well as he has is due to all of your prayers and the mercy and love of our God. We hope all of you are having a blessed summer and enjoying the beauty of God’s creation!


Walks put the boys right to sleep :)

"Oh my...I'm getting old!"


Sweet smile...I love the little tongue!



7 Months

Best bubs!!

"Hey! Come with me!"

See my two teeth!!

Baby blues

And he said I couldn't pin him!

Story time with Poppy & Uncle James

Out walking with ALL our gear

Lunch time - Kellen is supposed to be giving Carson tips

I can almost sit by myself

Monday, June 4, 2012

June

The boys will be 7 months old this Friday! Wow...how time flies!!!

The boys are doing wonderful...both are continuing to grow and meet developmental milestones. Kellen is getting much better at sitting up by himself although he has now decided he doesn't want to roll over by himself. He has a mind of his own : ) His first two teeth (on the bottom) have come in...Yay! But this has made him a little crankier and has made taking a bottle even more difficult. The praise is that he does LOVE eating cereal and baby food. I think we have almost made it through ALL the vegetables!

Carson had a follow up appointment with cardiology, surgery, and ENT last Friday. The appointments went well and really not a whole lot had changed. His echocardiogram was 'normal' & unchanged. He does have a PFO (patent foramen ovale), which is a hole between the right and left atria. We were told this is normal until the age of 5 and 25% of the adult population has a PFO. So it is not serious but we do hope it closes on its own. Dr. Yang, his general surgeon, continues to keep an eye on his Gtube as it doesn't look like it is going anywhere soon and it continues to leak at times and develop mucosa (lining of the stomach which comes up to the top) around the stoma. We are attempting to get the stoma to scar down & heal by using silver nitrate. Carson is not requiring as much oxygen now but Dr. Yang and Dr. Costa (ENT) are both a little surprised that Carson is not yet off oxygen. We had a chest X-ray done to look at his lungs and Dr. Costa recommended having a bronchoscopy performed this summer to take a closer look at his airway, nasal passages, and vocal cord. The bronchoscopy is considered a surgery and will require general anesthesia. It is scheduled for July 18th at this time. Please be praying for a smooth procedure as well as continued healing of Carson's lungs and airway. The bronchoscopy will give us further information on the possible timeline for removal of his tracheostomy. I think we are all ready to see some BIG progress but for now we will have to just wait. Carson's sweet smile makes all the waiting worth it! Carson is also doing really well with his head control, sitting up, and rolling over. In fact, he often prefers to lay on his side or stomach : ) Other praises for Carson...he is much happier overall now and no longer screams bloody murder with his bath or when you put him in his carseat. This makes my life MUCH easier and makes the trips to St. Louis less stressful!

Both boys made their first trip to Meme & Papa's house on Memorial Day! They did really well! Yay!

Continued prayer requests...
1. Complete healing for Carson's little body, including his lungs and airway, his suck/swallow function (to improve his ability to eat by mouth), and the G-tube site
2. Guidance for the doctor's to determine the best course of procedures and treatments for Carson.
3. For the nurses, who are such a big part of Carson's care.

I'll try to get more pictures up soon!

Thursday, May 24, 2012



Mr. Kellen ready to go fishing

I found my feet!!

Uncle James got this hat for us : )
Sorry its been awhile since the last post. The boys continue to do well! Carson has his first cold so please be praying for healing. His little nose just runs and runs and runs. I think we may be on the recovery side already though. Both boys continue to impress us with their development...both are much for alert, attentive, and interested in what other people are doing. Kellen has now found his feet and also rolled over ALL by himself : )  We won't go back to St. Louis for doctor's visits until June 1st.

Much love to everyone!! Hope everyone has a wonderful Memorial Day weekend!

Wednesday, May 9, 2012

6 Months

Tummy time!!!

Mr. Innocent



"I'm nothin' but sugar!"



Sweet laughter

Brothers :-)

The boys celebrated their 1/2 birthday on Tuesday!!! They continue to be our inspiration and provide many smiles and laughter! Thank you so much for the continued prayers!

Thursday, May 3, 2012

Carson's first laugh caught on video

There is no sweeter sound than a baby's laugh and the wait makes it even sweeter! Enjoy!!