Caden’s Page

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.

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.

You can join Team Caden Osborne by clicking the image below. You will then need to accept the “Waiver/Agreement” in order to register for the walk. You will not be required to donate, but you will have to provide some contact information and create a user id to complete the process.

The weather is supposed to be great Saturday morning. We hope to see you there. Please call or email us if you plan to participate in the walk.

How’s Caden?

Caden is doing much better with his cold. He is getting back to his old self more every day. Sherry’s been working with Caden on his swallowing. Caden has been assigned some homework by his speech therapist and he seems to be procrastinating on his homework just like his daddy has been known to do. Caden seems to work a little harder for the therapist than for his mommy these days.

How’s Riley?

Riley got to go to a high school football game for the first time this weekend. He went to a home game at Summerville with his Grandpa and Grandma. They said he did not want to leave the game. Riley liked the band the best.

Caden started the week off pretty rough. He has picked up a cold that landed him at the pediatrician’s office this week. They took the conservative approach and prescribed some antibiotics for him. Caden has been very fussy and having a hard time sleeping.

Caden saw his new speech therapist today at MUSC. I have been asked, “why a speech therapist?” It seems that the speech therapist are the experts in swallowing issues in most cases. Sherry took Caden to his appointment. She said that the new therapist pushed Caden a little more than his previous therapist. The therapist then played with Caden for a little while afterwards. The therapist said, “We always finish as friends.”

Caden has also been actively cutting teeth. I noticed his fifth tooth coming through his gum over the weekend. These pearly whites are doing wonders for Caden’s smile and making him even cuter than ever. He is becoming much more interactive and is getting better at sitting up every day. He even holds himself up in a standing position with some assistance.

Sherry and I are doing pretty good. We got to go on a date this past weekend thanks to our friend Stephanie. We had a great time and really needed the quality time together.

It is a little more than a week until the Low Country Heart Walk. I have been a little apprehensive to even pursue more donations for the Heart Walk given the more immediate need for those affected by Hurricane Katrina in the Gulf region. I know that the devastation caused by Hurricane Katrina has been on everyone’s mind including with our family. I wanted to provide you with a little information that I received this week concerning the involvement of the American Heart Association (AHA) with the Katrina relief efforts. Please be assured that any donations you make to the Low Country Heart Walk will go to support an organization that is committed to helping in the Katrina relief efforts as well as fighting heart disease. Below is a quote from an email informing me of what the commitments are from the AHA towards the Katrina relief efforts.

“To respond to the overwhelming needs of the devastated areas, the American Heart Association has joined forces with the American Cancer Society and American Diabetes Association to jointly contribute $1 million to the Bush Clinton Katrina Fund, specifically to help get hospitals, healthcare systems and the patient support services in the devastated areas up and running again. The organizations hope that their support will help ensure that those patients who have cancer, diabetes, heart disease, or who suffer strokes will continue to receive the quality healthcare they need during the crisis and beyond. People with these chronic diseases are among the most vulnerable during times of crisis.”

Please visit the link at the top of this page to find out more on how you can support the AHA and the Low Country Heart Walk.

I want to thank those who have already donated. Everyone is invited to join Caden and our family for the walk on Saturday morning September 24th.

We did get call from the doctor on Friday telling us that the results are back on Caden’s immunology blood tests. He did not give specific numbers but did say that Caden was headed in the right direction. His T-Cell counts have increased which means his immune system is maturing without any intervention.

Caden had a MBS (Modified Barium Swallow) study done at MUSC on Friday afternoon. This was to test his swallowing functionality after the second botox treatment. This MBS showed no improved swallowing functionality relative tot he last MBS which was doe one week after th first botox treatment. While the recent botox treatment was a little bit larger of a dose, it appears from this MBS that Caden was just not trying to swallow as much today as he did during his last MBS. Caden did swallow fine when he tried, but for some reason he just did not got through the motions today as freely as he did on the last MBS.

We had a pretty lengthy conversation with the therapist at MUSC today. Sherry and I want to try using the MUSC therapists for a while for the feeding issues. They agreed that this might be a good move for the short term. This will require at least one more trip to MUSC per week for Caden. The big problem is that Caden’s case is so rare that no one can even find research on how to treat his swallowing condition. MUSC has one therapist who has been working feeding issues for about 20 years and she has only seen two other DiGeorge children with anywhere near the swallowing difficulties that Caden displays. They lost contact with other two patients and have no idea what happened with their swallowing issues.

We also discussed whether Caden is still at risk for aspiration based on the fact that he has completed two MBS studies with no signs of aspiration during the tests. The therapist believe that Caden is still at risk for aspiration in the event his secretions get to flowing faster than he can swallow given his limited swallowing capacity. For us this means that we still need to suction Caden when he starts to cough, gang, or show and signs of difficulty breathing. Sherry started to transition to a bulb suction technique this week to try and minimize the amount of trauma inflicted on Caden’s nasal passage to get his secretions cleared. Caden continues to need very little suctioning at night. I have not quite got used to Caden sleeping so well without needing suctioning. I find myself waking up and having to go check on Caden as much as several times per night even when he is doing fine.

Heart Update
Sherry made an appointment with Caden’s cardiologist. This is for us to sit down and get a clear understanding as to why they are not monitoring Caden’s heart a little closer given the severity of his outstanding heart defects and his rapid growth. The appointment is not scheduled until the week of the 26th. We will keep you posted on this subject a we get more information.

Caregivers
We have been blessed with some great help lately. Today one of my former co-workers watched Riley while we went to MUSC with Caden. She has also been helping Sherry with errands and has been generous with clothes from her little boy who is at least one size ahead of Caden at all times. Sherry has also worked out a deal with Emory’s Mom so that we can take turns watching each other’s children to allow for a date at least once per month per couple. These folks along with a new sitter to take care of both boys and one of my sister’s best friends has made life a little more bearable for Sherry this week.

Please keep us in your prayers. We have a lot to be thankful for and that is what you can pray for this week when praying for us. Just thank God and give him credit for our blessings.

Caden goes in for a modified barium swallow (MBS) study this afternoon to see how well his recent botox treatment worked. We will let you know how it went later this weekend.

Caden is home and napping in his own bed after a good day at the hospital. Caden had no ill affects of today’s procedure. We won’t know how effective this botox treatment is for at least a couple of days when it takes affect. It was a long day. We arrived on time, but did not send Caden back for the procedure area until about 11:00. There was a case before Caden in which the patient was slow to wake up and they wanted to make sure everything was good with that patient before moving to another case.

There was a little trouble as usual sticking Caden for his IV and they had to stick him in a separate spot to draw blood. All of this poking was done after giving him some sleepy gas through as mask to mildly sedate him. We found out after he woke up from the entire days events that the lab did not want to accept the type of vial used to collect one of the blood samples. They wanted to poke him again. We told the nurse that they would have to work this problem out with the lab because Caden was done getting stuck for today. Caden’s doctor walked up and echoed our response to the nurse about the blood test.

I have included an image to illustrate what this botox is actually doing. The two images below are show as if you were looking straight down Caden’s throat at the top of his esophagus. You can see that the opening to the esophagus was very small on 8/3/05 during the first botox procedure. The smaller image on the upper right was taken today and shows what affect the first botox treatment had on relaxing that muscle at the top of the esophagus. These images are arranged as if the front of Caden’s throat is at the top of the pictures. There will be no way to illustrate the effectiveness of today’s botox procedure since it will take a couple of days for it to take affect. We do expect for Caden to have another MBS (modified barium swallow) study done in the next week and a half.

Thank you so much for your warm responses to our prayer request. We give God the glory for all things in our life. Caden’s continued improvement is nothing short of a blessing to Caden and the rest of our family. I believe that God is smiling today at the number of people who are turning to him for answers for our family.

Caden will go in at 8:30am on Friday for a second treatment of botox to his upper esophagus muscle. This procedure will be performed as out-patient at MUSC Rutledge Tower. He will also have blood drawn for immunology ad endocrinology tests while he is sedated. Please take a moment to pray for our little boy and our family tomorrow morning. We ask that you take a moment to pray the words from our wise friends who emailed us this evening with this message:

we’ll be praying for Caden tomorrow and his botox treatment – for everything to go smoothly, wisdom for the doctor and other healthcare personnel caring for him, just the right dose to be given to him, easy recovery from anesthesia, safety in travels to and from, peace for the two of you, provision for Riley

Please also pray for me in particular. I continue to have a great battle with an almost unbearable amount of depression and stress at times. Thank you for your love and carrying for our family.

God Bless!