Friday, October 21, 2005

 

Corrections and an update

I made a couple of mistakes in the last posting. I used a half ounce in place of a half teaspoon. That is 15ml verses 2.5ml which is what I meant to say. Caden is still taking only about 2.5ml of food by mouth over a 30-45 minute period. I also made a mistake in saying he is getting five feedings when in fact his is only getting four feedings via g-tube. I apologize for the confusion.

We had to take Caden in to the doctor Friday due to some severe congestion and cough. Caden had a really rough time getting to sleep last night. Sherry and Riley have had a little bit of cold symptoms over the past week and Caden seems to have picked it up. The doctor said that there were no signs of fever and that his lungs sounded great. We just need to let this run its course. He did give Caden some cold medicine and gave us a few tips on how to help the cold clear up. Other than that he is going to be fine.

We had our 40-days of Community group meeting here Friday tonight and the doctor gave us the all clear for having folks over. He said that there is not much danger of Caden giving this to anyone at this point especially since folks don’t get in his face. He was more worried about Caden getting something from someone else, but we mitigated that by going ahead and putting Caden in bed before folks arrived.

Riley is doing much better with ther exception of having a cold this week. He passed his 3 year old check up with flying colors this week. He is a little small for his age, but the doctor says not to worry about that. The doctor says that Riley is healthy and smart and that the growth will come.

We have decided to go forward with another botox treatment for Caden’s swallowing. As stated in my last post (after the correction), Caden is about at the same point as he was a month ago with swallowing. We have been suctioning a ton more this week due to the congestion, but Caden has been requiring just a little more suctioning day by day over the past several weeks. We have made the appointment for the 14th of November to get the next botox treatment done. It will be outpatient again just like the one done almost two months ago.

Thanks for your prayers. Sherry received a few calls from folks excited to hear about Caden’s progress earlier this week. I did mean to let you know that his physical and occupation therapy is moving along good. I do apologize for the mistakes on the feeding and swallowing.

Monday, October 17, 2005

 

Happy Birthday Riley

Picture of Riley and Caden
Big brother Riley will be three years old on Tuesday. Caden and the rest of our family celebrated Riley's birthday over the weekend at Chuck-E-Cheese. I am not sure who had more fun between Riley, Caden, and me. Cousin Kurt and many other party goers helped Riley collect and cash in over 1000 prize tickets from the games at the end of the day.

Speaking of birthdays we have another big birthday fast approaching. Caden will celebrate his first birthday in just a few weeks. We plan to celebrate Caden's birthday privately as a family. That said a year of blessings and showers of God's grace will not go unrecognized here at the Osborne house.

All friends, family, and prayer warriors for Caden are invited to celebrate a wonderful year of miracles. Please join us at our house on Saturday, November 5, 2005 from 11:30am to 1:00pm. We are going to grill hotdogs and burgers. Bring your empty belly along with a Coke, side dish, and/or dessert. Please RSVP via email or phone no later than 10/30/05 if you plan to attend. Once again, this is not a birthday party. It is a day of celebration of the things that God has done in our lives over the past year.

Greenwood Genetic Center

We took Caden to the Greenwood Genetic Center last week. We spent several hours answering questions and discussing issues related to Caden's health conditions. The doctor is assessing all of the information that he gathered on Caden and our family and he plans to send us a letter in the next few weeks summarizing his observations and recommendations for future tests and treatments that we should consider. We will keep you posted on the results of his findings.

Caden's Progress

Caden is doing well with his physical therapy in particular. He is sitting up for extended lengths of time each day. He is becoming more interactive when we play with him. His progress with eating by mouth is slow, but improving. He continues to sample different flavors, but can only swallow approximately a half a teaspoon of food in a 30-45 minute period. He still gets tube feedings of special order formula four times per day. He does still require suctioning several times per day. Praise God, he sleeps through the night for 10-12 hours without needing any suctioning at all on most nights.

Thoughts

It is amazing how the smallest of people can lead you to your biggest lessons in life. I will forever be thankful to God for the journey that I have been on for the past year with Caden and our family. I can not believe it has only been a year because I have collected a lifetime of experiences.

Oh yeah, don't forget to check out the latest pictures HERE.

Tuesday, October 04, 2005

 

Cardiologist Visit Today

Today's visit with the cardiologist went about as good as we could have asked for. The appointment was primarily made to give Sherry and me some clarity on the future repair to be done on Caden's heart. The largest piece of information that we learned was that we have been working on misinformation for a while. Sherry and I both were led to believe that Caden had an outstanding ASD to be repaired in the future along with a bicuspid aortic valve that is also small in diameter.

The ASD is no longer a concern. It was actually repaired during Caden's original surgery on 11/8/04. I confirmed this by combing through some of Caden's records tonight. Sherry and I both are certain that the cardiologist told us back in May that the ASD was still in need of repair and that the Interrupted Aortic Arch and the VSD were the only defects repaired during the initial surgery. The meeting today was by far the most productive meeting with the cardiologist in a while. I believe that Sherry and I both were more in tune with the conversation than ever today. In the past our thoughts have been clouded with other pressing issues and emotions related to immunology, swallowing, and reflux. All those conditions have not vanished, but have become much better managed and understood by both of us. I apologize for the confusion, but the only thing that we really have to worry about with Caden's heart for now is the aortic valve and that is not time sensitive. There is a chance that the valve could need replacing in the future, but there is nothing to worry about right now. We will proceed with six months or more between cardiologist visits until they determine that action is required. That initial action could be a trip to the cath lab or it could be a trip to the operating room. We have no way to know right now. They estimate that it could be years before they need to address the flow restrictions caused by the bicuspid valve and its size. The cardiologist referenced Arnold Schwarzenegger who had his bicuspid aortic valve corrected surgically about ten years ago. We all know what his physical accomplishments were and they were all done with a bicuspid aortic valve. Caden's case is by far not the same situation, but at least I hope that tidbit of information helps put into perspective how a person can function with a bicuspid aortic valve.

In other news, we are headed to Greenwood, SC next week to visit a genetics clinic. This clinic has been mentioned to us by three separate people in less than a week recently. We have known about it for a while, but just have not had a chance to make the trip up there. We hope to gain some information about who can help us deal with some of the areas of Caden's care that we feel are not as strongly serviced by MUSC.

Happy Birthday Hailey!!! You are looking great. We wish you and your family the best.

Sunday, October 02, 2005

 

Happy 11 Months Caden

Caden is 11 months old today. We are fast approaching the big number one. Caden and the rest of the Osborne gang recently joined hundreds of folks at the Lowcountry Heart Walk. Team Caden raised $325 for the cause with Aunt Becke bringing in $100 in donations from my hometown of Clinton, SC. We thank all of you who donated in Caden's name. It was a lot of fun. The Lowcountry Heart Walk raised over $375,000 with more than $90,000 of that coming from MUSC teams. I got to be there for the walk during a few days break from a three week long work trip to San Antonio.

Caden is doing pretty good these days. He has recently recovered from a cold. He seems like he may have picked up another bug over the weekend. Please keep him in your prayers as his nights are a little rough when he is so congested.

I have posted some pictures of Caden tasting some food. Don't get too excited when you see these pictures because Caden is still not swallowing enough to eat by mouth. Caden is getting to experience a variety of tastes to help stimulate his desire to want things in his mouth. We have been told by the therapists to let him taste just about anything we want at this point to see what he likes. Caden still has to learn what most kids gain as a reflex in the first few hours of life. He has to learn the suck and swallow reflexes. Sherry has been spending about 10 minutes trying to get Caden to swallow less than 1/4 of a teaspoon of formula. She colors it blue with food color to make it easy to tell when Caden has actually swallowed it.

A big Happy Birthday goes out to Aunt Becke. It is a little late, but not forgotten. Aunt Becke is a ripe age of ;-), well I better not say since I am probably already in trouble for not calling her on her birthday.

If you know me at all then you know that I am much like my Papa was, I never met a stranger. A big thanks goes out to Nita, Curtis, their family and friends of San Antonio. I met Nita on a flight from Atlanta to San Antonio. I got to talking about my boys, imagine that. What made this such and interesting talk was that Nita has a really good friend whose child was diagnosed with 22q13. This is an even more rare chromosome deletion of 22q than Caden's 22q11.2. Nita invited me over to her home for dinner with her family an friends while I was in San Antonio. The food was outstanding and the company was even better. Thanks Nita and Curtis! I still want to know how to make those shrimp.

I have added more than two dozen pictures this evening. Please click HERE to view the latest pictures.

God Bless! Thanks for reading about Caden and our family.

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