Caden’s Page

I have six tickets for the 2PM VeggieTales Rockin’ Tour Live 2005 show at the BiLo Center in Greenville, SC for this Saturday afternoon 7/30/2005.

The six seats are together in Section 116 ROW BB Seats 1 thru 6. I have illnesses in my family that prevent us from making the trip and the Dad from the other family who bought three of the tickets learned today that he has to work on Saturday. That said, we have agreed to pass these off to the first person who will promise to use the tickets. I have the tickets here in Goose Creek, SC and must be able to hand deliver to the recipient since it is already too late to ship them over-night for a Saturday afternoon show.

I will let the tickets go to the first person who emails me and promises me that they will actually use them. If I have no takers before noon, I will call one of the local radio stations to see if they can give them away on the air. Send email to hank.osborne@hoei.com if you want them.

These tickets have an $18 face value each.

Caden has been doing great. He continues to need suctioning as much as 4 to 5 times per hour during wake time, but requires much less during the night when he is sleeping. He will be going to MUSC later today for a MBS (Modified Barium Swallow) study. This will test his current swallowing functionality so that the ENT (Ear, Nose, and Throat) doctor will have a good reading on how successful the botox injections next week. Caden will have another MBS a week or two after the botox treatment. We do not have a time for the botox treatment next Wednesday. We suspect it will be early since the cardiologists are involved and like to get things done early. The ENT performing the procedure will utilize the anesthesiologist from the Pediatric Cardiology department. The cardiologist being involved in Caden’s other treatments is standard practice.

Here on the left you can see Caden showing off his sitting skills again. He is doing more sitting everyday, but still needs a little help to keep him from falling over on his side. He is not yet able to sit without having his hands on the floor. Down below you can see Caden’s newest trick. He has found his toes and obviously thinks they taste pretty good. Yuck! I guess it is a baby thing. His therapists love this kind of stuff.

I promise that I will post some more pictures in the next few of days. I am trying out some new picture gallery software on my web site and I have not yet got it running the way I would like just yet. In the meantime, I will post a few cool images right here in each of the postings as I have been doing in the past couple of weeks.

Please continue to pray for our family. We continue to experience extreme frustration and exhaustion at times and are constantly being hit from all sides by new challenges. God continues to bless our family in so many ways. One big way is through the great friends and family that read this page and pray for our specific needs.

I know it seems like it has been for ever that we have been making these prayer requests. Tomorrow 7/29 will mark one year since Caden’s heart defect was found on a level II ultrasound at MUSC. Business picked up for us from that time forward with doctors appointments almost weekly leading up until October 2004 when Sherry ended up getting hospitalized due to preterm labor concerns. Then Caden was born on November 2nd and well you can read most of the story from there forward right here on Caden’s Page. I will admit that I have not always given the entire story here on Caden’s Page. It would be safe to assume that if I am writing about a bad day then it is probably at least twice as bad as it sounds in most cases. Lately it has been most difficult because help has sort of dried up. We were warned by other families who have been in similar circumstances that this often happens, but it took longer than I thought it would to be honest. Maybe part of it is that we have lost the energy to seek help or simply feel like we have over run our welcome in other cases. Regardless of the underlying reason we are just surviving and looking for the day when we can pack up that suction machine and get a full night’s sleep more than one or two days per week. Not to mention the more important fact that Caden experiences discomfort and frustration from the continued suctioning. Please remember us daily in your prays.

Keep praying that this botox treatment next week will work as advertised. Better yet, you should pray that we go in this morning for the MBS and Caden gulps down a few ounces of barium like he knew how to all along. There’s plenty of room for divine intervention here and I would love to tell the ENT that her services will not be required for botox. Wouldn’t you?

Riley had a little trip to the doctor today. It appears his ahs a stomach bug that has been going around. Riley stood up when the doctor came into the room this afternoon and clearly stated, “I not want poke and I not want shot.” The doctor assured Riley that there was little chance of needing a shot today and Riley said, “Okay.” I hope you found that to be a cute as I did. Of course I am just a little bias.

Caden had a good week. He/we had an appointment with the pediatric surgeon earlier this week at MUSC. This appointment was used to get Caden checked out, and get Sherry and me trained on how to replace/change Caden’s g-tube. This was a very interesting visit to MUSC today the least. The intent of this training is to hopefully prevent another emergency room visit simply due to the failure of Caden’s g-tube. The tube that he uses now is held in place by a little balloon that is inflated using water after the g-tube is inserted. I actually inserted Caden’s new g-tube button during this visit to MUSC. Oh yeah, we got a new type of g-tube for Caden during this visit. It is pretty neat. I will not get into the details right here, but you can read more about the different types of tubes that we have experienced with Caden on the links page if you get into that technical medical stuff at all.

I personally had a rough week. I got so run down by the end of the week that I stayed home from work. I took some sound advise from a friend who told me to not let myself go too far like I did back in December when I ended up in the emergency room on an IV due to dehydration. The long hours are hard on my body with little to no nursing assistance throughout the night. We did have some help during one evening this week up until about mid-night that allowed for me to sleep for a few hours that I might not normally get. I was better after some extra rest and fluids.

We ended up taking a day trip to a family reunion this weekend. It was about five hours round trip on Saturday, but well worth it for many reasons. The first good reason was that I got to visit one of my favorite people on this planet Aunt Dolly. She and her sister are the only two remaining in their generation of my Mom’s father’s (Papa) side of the family. Papa pasted away back in February. Within about a week prior to his death we lost his brother. His brother’s son Bruce was there the night Papa passed as was Aunt Dolly and Aunt Mattie. It was just within the past month or so that Bruce also passed away due to complications with an open-heart surgery. Bruce had taken care of his own father into his home. Until his father’s death, he regularly took his father to the nursing home to visit his step-mother and my Papa. His step-mother also passed away within weeks of his father and Papa passing away. All of this has been a great strain on Aunt Dolly in particular since she also lost a son within the past year or so. You can see me pictured here with Aunt Dolly this weekend.

Another good reason for our trip was that we got to meet a cousin that I didn’t even know I had. The interesting thing about this meeting was that his daughter lives right here in Goose Creek. She has been struggling with some medical issues with her child who is a little older than Caden. My cousin gave Sherry his daughter’s contact information and Sherry plans to call her this week. We are hoping that we can share notes on what programs we have learned about to help each of our families as well as share notes on doctors, clinics, and specialists that we all have found helpful.

We got to see my Mom’s new house and visit our old cats. The cats had to move out from our house a couple of years ago due to allergies.

The last great reason for our visit to the upstate of SC was so good was that we got to visit my only living grandparent. She is my father’s mother. She had not seen Caden in several months and was absolutely delighted to hold him yesterday. I take time to stop by to see her even if for a few minutes every time I am in town.

To wrap this up I want to share a couple of notes on my birthday this week. Sherry went the extra mile as usual. She took Caden and Riley to a place called Kiln Time in Mt. Pleasant, SC to hand paint a piece of pottery for my birthday. It is shown here on the right side of the page. It is a serving tray that I used to serve up a great pork tender loin that I grilled for our family and some guests this week. Be sure to call Sherry if you are ever short on creative ideas for a special occasion. This tray features Riley and Caden’s had prints on the front to complete the shape of a lion’s head to go along with the “king” of the grill caption. This ties in to one of Riley’s favorite books The Lion King that I read to him regularly.

We thank you for your continued prayers and support.

May God shower you with blessings as he has us.

You can read the details on the Contact Us page that tells you how to receive an email each time Caden’s Page is updated.

After looking at the Contact Us page you may wonder if I am worried about publishing our address on the Internet. No, not really. If you have a registered phone number or own property in most large counties then you can easily be located on the Internet anyway. Read my recent story titled Online Truth Part Two: Personal Information for details.

You can see from the picture that he is sitting almost unassisted. He actually sat for about two minutes in this position on Thursday for the physical therapist. The therapist was amazed at Caden’s progress in this area. His interactions and responses to things around him are increasing daily.

The past few days have been busy for our family. Sherry and I have been attending the GFI National Conference in downtown Charleston. The conference has been an outstanding opportunity for Sherry and me in so many ways. It has taught us plenty about the parenting ministry as you might expect. We have heard some great teaching from key note speakers as well as workshop presenters. Outside of the conference curriculum our attendance at there and lack of attendance at home has taught us how well God takes care of things. We have been forced to become more comfortable with leaving Caden in the care of others while we are a thirty minutes or more drive away from him. This has truly been a faith building exercise for us.

A look into our world has been given to a few people as a result over the past few days. Sherry’s parents and our friend Stephanie all had very similar responses after caring for Caden for a few hours. It was a surprise to them how much Caden needs to be suctioned. They were surprised how demanding Caden’s care can be at times. We have heard similar reactions from my mom, my sister, and from Aunt Addie.

The demands experienced from caring for Caden have been a blessing for me. Yes, I did say a blessing. I have learned so much more about how to deal with situations that you have no control over. All I need to do now is figure out how to translate this new found knowledge into other areas of my life and I will be a much nicer person to everyone. I tend to be much less tolerant of anything that can be changed for the better.

I want to say another word of thanks to those who have assisted us this week. Thanks to Stephanie and Gerald, Aunt Addie, Christina, and Sherry’s parents. They have all been angels.

I also want to offer a BIG thank you to my neighbors on each side of us. Tom on one side and Kime on the other side. Both of these guys have taken turns cutting our grass for the entire year. I can not tell you how big of a blessing this is to our family. I thank them and I thank God for the love they give our family through their hard work.

I have to go now. Aunt Addie is here to sit with Caden for one more night and she expects me to use this time to get some sleep in the same bed with my wife. It is a very rare occassion for Sherry to get to sleep an entire night in the same bed and Aunt Addie is making sure we get to do so tonight.

I have one last thing. The Drakes are doing okay. Mom is home and doing better. Thank you all for your prayers. Praise God for the protection of Amy and her children.

Oh yeah, don’t forget to check out the About Caden page. It has been updated with the latest on his history and care. I have made a few changes that Sherry requested as well.

Okay! I am going to bed now. May God bless you and yours!

Drakes
Please pray for the Drakes! Amy called me late this afternoon from the hospital. Amy was involved in a car crash this afternoon with her two boys in the back seat. I had asked you to pray for the Drakes last week because Amy (pregnant with twins) had been put on modified bed rest. She had been hospitalized a couple times prior to this week due to pre-term labor. She has been given modified bed rest and has been doing about as good as a mother can do with two children under the age of five in the house. She has only been going out to drop off and pick up her boys from people who have been helping her watch them while she rests. She had just picked them up today when her car was struck from the rear. Amy is reporting that everyone is doing fine. The twins are showing good heart rates and movement. The crash did trigger contractions and she has been admitted to the hospital for observation. I am pretty sure the Drakes are in the same boat as us with no family in the immediate area. Sherry took them dinner to the hospital tonight while I made contact with our church to make sure the Drake’s small group knows what is going on with them. Sherry said Pastor Phil was on his way into the hospital when she was departing. The Drakes need to know that God is there with tonight. It is way too easy to fall victim to fear in time like this. Please ask God to make his presence known to them tonight. Please ask for God’s protection over this family tonight. Please thank God for his protection over this family already today as no one was seriously injured.

Caden
We have a date for the botox treatment to fix Caden’s swallowing problems. The treatment will be performed at MUSC on August 3, 2005. Caden will be hospitalized for a short time due to the fact that they will need to put him under general anesthesia. In adults this procedure would be done as an outpatient appointment. Small children are not able to sit still for it to be performed safely. They will want to monitor Caden for a day or two after coming off of the drugs used in the anesthesia. Caden should show a response to the botox within a couple of days.

Caden has also been scheduled for a MBS (Modified Barium Swallow) on July 29 and then again approximately two weeks after the botox treatment. I actually received a package from MUSC this past week with a CD containing copies of the video files captured during Caden’s three previous MBS screenings. I requested this to send to The Center for Pediatric Feeding & Swallowing Disorders in New Jersey. There is a specialty clinic in NJ to help kids like Caden learn to swallow even though he has never taken anything by mouth. The clinic in NJ will just be on board to support Caden’s primary speech and occupational therapists who are already working with Caden at MUSC and through BabyNet .

Caden continues to improve with his motor skills. He is trying to sit up, but still requires some assistance. Sherry has witnessed him rolling over again recently.

We have been very blessed with caregivers for the next few days. Sherry and I will be attending the Growing Families International (GFI) National Leadership & Alumni Conference being held here in Charleston this weekend. Sherry has not only been able to get care for our boys during the daytime, but she has been able to find help over night for watching Caden on Thursday, Friday and Saturday so that we can both get sleep each night. Riley is not that hard to find a sitter for, but there are still not very many people that we can leave Caden with. The list of people who we consider to be suitable and capable of watching Caden is much longer than the list of those who are comfortable watching him. A BIG thanks goes out to Sherry’s parents, Stephanie and Gerald, and Aunt Addie.

One Year Ago Today
This date 7/13 marks a one year ago that we were first alerted of problems with Sherry’s pregnancy. I attended Sherry’s OB/GYN appointment as usual. They did an ultrasound and found some things that called for a referral to MUSC for a Level II ultrasound. They did not tell us much that day other than the things they were seeing could be interpreted as soft indicators for DOWNS Syndrome. Little did I know that this was the beginning of the most difficult and rewarding year of my life.

I left Sherry with tears in both of our eyes later that afternoon as I departed on a flight to California. I would be gone for tens days as the leader of one of the largest teams ever dispatched from the project that I work on. My team was tasked with one of the most complex installations that any of us had been exposed to in recent years especially considering most of the team had little to no experience on the computer security equipment that we were installing. We successfully installed and configured this equipment to communicate between nine different military installations across southern California and Arizona in a ten day period. It was very difficult to stay focused during that task. I did not tell anyone on my team what was going on during that visit. It was not my first life changing event while working a high pressure job.

The folks back at MUSC were pressuring Sherry to go on in for the Level II ultrasound. We were both glad that Sherry waited for me to return. It was during that visit to MUSC on July 29, 2004 when Caden’s heart defect was very accurately diagnosed.

I can remember it like it was yesterday. We left the room where an echocardiogram had just been performed to verify the Level II diagnosis. I was in shock and did not make it to the elevator before completely breaking down both emotionally and physically. The nurse who was escorting us to the elevator immediately took us into the closest room she could find vacant. It took me a little while to get myself gathered back up. There have been quite a few more of those moments in the past year and some in the past couple of months. I thank God for my experiences in this past year. I have grown in ways that I would have never known without the circumstances we have faced with Caden. Caden’s life has probably touched more people’s lives in one year than most of us will affect in a fifty years.

Our day was capped off with a trip to the new Cooper River Bridge. Check out the full story on my personal blog here. You can see more pictures here. We ran into Wendy and David during our visit to the bridge. They had walked from the Mt. Pleasant end all the way across and were on their way back when we ran into them. We cheated and took the bus up and then walked back done the Mt. Pleasant side. It really was fun.

Caden had another great day. We adjusted his feeding schedule today so that we could drop a feeding. He was on six feedings per day and not we have got him down to five feedings at the same total intake for a 24-hour period. He seemed to tolerate the change well. He slept longer during his nap this afternoon. That is a good thing.

Don’t forget to check out yesterday’s posting. I posted pictures of Caden from around the house yesterday as well.

We went to our favorite “Family Life” church service as usual this evening before our trip to the bridge. We sat down in front of a young lady who was sitting by herself. She later instroduced herself as a NICU nurse after seeing that Caden was hooked to a feeding pump. She spoke with Sherry after the service. She offered to help us out watching Caden sometime and is going to see if any of her fellow nurse co-workers might be interested in helping as well. God has blessed us through the Family Life Service in so many ways. This is just one more way God is answering our prayers.

I suspect I better run the next time I see Jim Miles. He will proably want to hug me until he squeezes the blood out of my head for plugging the Family Life Service. God is really using Jim, Jenny, and the rest of the Family Lifers to do some awesome things with that service. Keep up the good work gang!

Caden is doing great. Today I took some new pictures of him. Caden was having such a great evening. See his new pictures here. You will also want to check out the video of Riley singing Jesus Loves the Little Children. It was a priceless performance. Go here to see it.

The new nurse did not work out. She reported to the agency that she was not comfortable with the case. At least it solved our dilemma as to whether to give her another chance or not.

We have rearranged our schedule a little to see how it works for Sherry and me. I am now taking the night shift until I get her up between 2am and 3am depending on when she gets to bed. I then go to bed until time to go to work or until Sherry wakes me up on a weekend day. It seems to be working pretty good so far. We have been on this schedule since Wednesday.

Congratulations to the Youngs on their new addition. Mom and baby are reported to be home and doing great. Praise God!

Caden is still doing great even with a little nasal congestion that crops up each night. He continues to grow and act more like a “normal” eight-month old every day even though he still gets all of his food and medicine through his g-tube. We have still had to suction him several times per hour to help prevent aspiration on his secretions. The swallowing issue is about to come to an end as I told you about in my last posting God is Great.

Tuesday night we had a new nurse. One of the nursing agencies sent her out a few days ago to meet Sherry and Caden. She had a rough time with Caden last night as she woke me up twice to assist her with the suctioning and with getting him back to sleep. We have not talked to the agency about how she felt about her first night with Caden. Our initial impression of her was less than stellar. We are certainly not ones to turn away a potentially good nurse after only one try. We will talk to the agency and see how she felt and then determine if we will use her again.

On the funding front, the Medicaid Waiver has hit another barrier. It has been denied, but we have been HIGHLY encouraged by those working Caden’s case to appeal becuase his case is one that can be won on appeal. The reason for the denial is that Caden is not suffering form a spinal injury, is not on a ventilator, and is not classified as MR/RD (mentally retarded / related disability to mental retardation). I plan to go into this in more detail later on a separate page because plenty of people come to Caden’s Page via searches on Medicaid related concerns. In SC it is very difficult to get a waiver approved for cases like Caden’s where his needs for nursing care are legitimate, but do not fall within the strict criteria of MR/RD , venilator, or spinal injury.

I get emails from other parents and see the statistics of the Internet traffic hitting this web site that tells me how people arrive here (i.e., searching a particular word on Google, came from Yahoo or MSN mail, etc.). Many are just searching for answers on Medicaid or nursing issues. You can see some of this geeky stuff by clicking on the Site Meter button on the left side of this page.

I will be updating a few more things on the About Caden page over the next few days so keep an eye on that. Please keep Caden and Hailey in your prayers. Please remember in your prayers the Youngs with their new addition on the way this week and the Drakes as mom has some modified bed rest with their twins due in approximately two months.

Keep an eye on my new blog Grill’n Time where we will be serving up lots of tasty experiences.