Caden’s Page

It has been a couple of busy weeks for us as I am sure it has for you. I wanted to take a moment to share the results of the Modified Barium Swallow (MBS) done two weeks ago today. The short version of the story is to say that the MBS showed no signs of increased swallowing functionality. This is certainly not the result we were hoping and praying for, but we will press on.

I have been pretty successful at getting Caden to take things by mouth so the therapist let me feed him while he was strapped to the x-ray machine. The picture here was taken in June 2006 just before the heart surgery that Caden went through on June 15, 2006. That was the “before surgery MBS” and then there was an “after surgery MBS” once he healed. That was the surgery where they severed the artery that was protruding in on his esophagus. That was also when they implanted the pacemaker that was found to be malfunctioning at the six week follow up for the surgery. ARGH!! We should have never got thing in the first place.

Anyway, Caden will continue being fed and hydrated with a feeding tube for the time being. Everyone’s still scratching their heads to find an answer. Caden’s ENT is supportive of us going to CHoP for the 22Q clinic or to the Feeding and Swallowing center in NJ. Oddly enough, the speech therapists have not been very supportive of this idea. Even more odd is the fact that we are on our 6th speech therapist in about as many months. They all feel confident hat they can handle Caden’s case, but none of them stay around for long. They all end up moving on to bigger and better things that take them out of reach from working on Caden’s case. One moved, another retired, etc… It just seems to be a very high turnover field in this area.

I want to share with you a rare video. I took the following video clip from Caden’s most recent MBS on December 17th. I hope this gives you some idea as to what we are dealing with concerning Caden’s swallowing functionality. In this video, Caden is being given a form of barium that is about the consistency of water. I gave him about a teaspoon (5 ml) in this instance. You will see my hand tickling his chin trying to get him to swallow. I even took a little task to demonstrate to him what he needed to do. He did go through the mechanics and motions of swallowing in this, but the liquid hit a brick wall at the top of the esophagus and just pooled up. There was a little trickle of fluid that got down right at the about the 38 second mark in this video, but after that there was nothing. I cut the clip just before suctioning out the barium residue. Then we went to a thicker form of barium and that was delivered by spoon. We saw the same results with the thicker stuff. This video demonstrates why we have had to carry a suction machine to help Caden clear secretions and nasal drainage. When he was an infant this was life threatening because he did not have the strength to cough any of it up like he does today.

The rest of the Osborne gang is doing pretty good. Our big boy Riley came down with something last week that actually required an antibiotic, steroids and breathing treatments. I can not remember the last time he had an antibiotic. He is doing much better now. Josiah, our little linebacker, is weighing in at 17 lbs at 4 1/2 months of age. He is sleeping about 11 hours at night uninterrupted…YEAH!!! Thanks Gary and Anne Marie Ezzo for your wisdom in Preparation for Parenting and Babywise!!! Josiah has also been started on solids and he is loving it. Sherry is making her own baby food and she is loving that. I think I saw her actually eating some of Josiah’s food the other day. Mommy and Josiah have a passion for acorn squash. 😉

I took my first trip to DC the week before Christmas. Sherry and the boys actually dropped me off at the airport after Caden’s MBS on the 17th. “First trip” does imply more to come. I took a new assignment that will have me traveling about a week per month, mostly to DC. Sherry and I have talked at length on the subject of travel for about a year now. We…she feels that she can tolerate me traveling up to a week per month. Traveling does come with some perks that softens the affects on our family not to mention this assignment has a ton of potential for me from a career perspective. As for the perks, Sherry will travel to Arkansas next week on a ticket purchased using flyer miles. Riley’s reaction after my third night away tugged on my heart strings most. Sherry said that he prayed and asked God to not make me travel anymore. She tried to soften it with some explanation of the perks and he seems to like the idea of free airplane rides even though he has little concept of money at his age.

Update: As we click off the last couple of hours of 2007 here in Goose Creek, SC I decided to update this before emailing everyone. Most of this post was drafted last night. As of this morning we found out that our big boy Riley is doing much better with the illness that popped up last week, BUT he decided to share it with Caden and Josiah. At the present time, all three of our boys are on antibiotics. This bug is definitely contagious and was bad enough for us to cancel a New Years grilled pizza party. We were having a few friends over for a BYOC (bring your own Coke) family friendly New Years celebration after work today. We planned to celebrate a Zulu New Year together so all the kids could get into bed by a decent hour. Oh for all you non-military types, Zulu is the equivalent of Greenwich Mean Time. And if you have never grilled pizza, then you need to check out the recipe we use for these occasions.

Happy New Year and many blessings from the Osborne family!!!

The UES dilation went of without a hitch.  We won’t know the extent of swallowing functionality improvement until Monday.  Caden is doing fine and playing here at home as normal this evening.

Thank you for keeping this little guy in your prayers.

It looks like we are finally on for an upper esophagus sphincter (UES) dilation. Caden is scheduled to report to the main MUSC operating room area at 9:10 am Friday morning. The procedure is scheduled to begin at approximately 11AM tomorrow. This is really an outpatient procedure, but the cardiologist want Caden in the main hospital OR using cardiology’s anesthesia staff rather than being of in an outpatient clinic. Please keep Caden in your prayers on Friday morning (14th) as he goes through this procedure. We will have a follow up visit to radiology on Monday morning to get a modified barium swallow (MBS) study. It is our hope and expectation that Caden will show improved swallowing functionality for the first time since birth.

Fun

The Osborne camp has been having fun in recent weeks even though ALL of us have had our share of the sinus crud that has been going around. The picture of Caden above on the left is one that represents a family tradition that Sherry started on Riley’s first birthday. Each year Sherry gets a picture of each of the boys wearing one of my dress shirts. The idea is to show how much they grow each year.

If you are really into picture fun, you have got to check our the Young’s blog. They have a family tradition of taking a family photo each year for Christmas. With five young Young children, it can be quit an event to capture a good shot. I think they average 30 plus attempts. Anyway, check out the details of their latest attempt at continuing this family tradition. I think Julie only posted about 14 tries. Given the recent summer like temperatures in the low country, Sherry and I thought the 4th of July picture in their side bar would have made a great Christmas photo.

Speaking of cool pictures. Check out this little treat. This is the product of our 2nd annual gingerbread train project. You will notice a cute little family of five waiting beside the train. Everything you see is edible including the snow (coconut shavings). Well, I would not recommend eating the foil wrapped around the coins in the US Mint car. That can be painful on the dental work. 😯

EEEverything else is edable and Riley can’t wait to prove it.

Last year we did an engine, caboose, and two other cars. This year we got a little over ambitious and created an engine, caboose, and four cars. One (the passenger car) was custom made rather than using the Family Fun magazine template.

Answered Prayers

I want to ensure you that God is at work in a big way. The prayer requests that I posted recently have been answered. Praise God! Little Alex is now at home. He still has plenty to overcome, and has been through a rough month or so. He is doing much better now.

Our little friend Callie at Standford, CA has gone through a couple of bowel surgeries since the last post and God has shown up in a miraculous way. There was one point where the doctors had her parents convinced that she would not make it though the night. I felt strongly God was not done with Callie and that the doctors were not correct in this prediction. I prayed that God would give Callie’s parents the faith and hope they needed to see Callie through. God did just that and Callie is stable. She is still in critical condition in the Standford ICU, but she is much better and is moving in the right direction weeks after the doctors predicted she would not live through the night. Praise God!

I hope you enjoyed this. We appreciate your prayers and support more than you can imagine. Once again, please keep Caden in your prayers tomorrow morning especially.

Please pray for:

• Protection over Caden
• God to guide the hands of the medical professionals working with Caden
• Caden to be strong and without fear
• Caden to have a rapid and smooth recovery

I will update once we are out of recovery and headed home. Please also keep me, Sherry and the boys in your prayers next week. I will be on work travel for the first in a while next week. I have taken a new assignment and have to go meet my new boss in DC. I am not leaving until after the MBS Monday. A coworker asked if I would see the president while I was in Washington. I told her that I was sure that the president knew I would be in town and it would not surprise me if he stopped by my hotel for coffee one evening. 😉

Seriously, this is a busy week getting ready for Christmas and Sherry will fly solo for a few days. She has not done this with three yet, so please keep her in your prayers in particular. I get my chance to run solo for a few days in January when Sherry goes to Arkansas for a wedding. 😕

I’ll leave you with one final picture.  Josiah got right in the mix when the Christmas decorations came out a couple of weeks  ago.

Bob? Larry?

No, That is Caden and Riley. Pretty cute, huh? Thanks to Grandma and Grandpa for the awesome shirts. And the white portion glows in the dark.

I thought I would share a little fun before getting to the heavy stuff. All in all, Caden and the rest of the gang here are doing good. However, this week has brought us back to the doctor’s office once again. Caden was scheduled for his monthly Synagis shot today that helps prevent RSV. The timing of the visit to the pediatrician was good. Caden has had a few rough days. He has not tolerated the tube feedings very well this week and his goobers have been turning thick and green. He has also been running a fever off and on all week. We have an antibiotic prescription on file at the pharmacy in the event things have not improved by the end of the weekend. The hope is that if needed, the antibiotic will cover him right up until the ENT procedure on the 14th. This will be the dilation of the UES that we have been trying to get or months.

Please pray fervently!

Our little friend Callie from the Atlanta area has been at Standford for several months now. Much of this time was spent in the ICU after at least a couple of surgeries. I will not go into great detail, but will say this. Callie is in serious condition and the doctors are not speaking words of life over this child right now. Please pray for Callie.

Our other little friend Alex is down the road in Savannah. He is going in for surgery tomorrow morning to have work done on a shunt that has not been functioning correctly. This is a shunt that drains fluid from his head down into his stomach. Please pray for healing and protection over little Alex.

I received and email from a friend this morning telling me of a couple that Sherry and I met last summer. They have just had a child who is facing a laundry list of medical problems. Their situation is very familiar. I reflected on this for a while and thought about where we have been and where we are now. Then I remembered sitting in the floor with Caden a couple of nights ago at about 4 AM when I got up to suction him. I held my big boy Caden and just cried. Tears streaming down my cheeks, I literally cried out to God on behalf of my little boy. As I look back on all of these situations, I sometimes feel guilty that Caden is doing so well. I don’t even know where these feelings come from or what to call them. I will say that I do truly cherish the laughter and fun that we have with Caden on a daily basis and count ever single minute of it as a gift from God.

No two situations are the same, but I can say this with certainty. These families are in pain right now and I know that from experience. These moms and dads hurt emotionally and even physically. I have lost a parent to suicide and three of my grand parents to cancer. I held the hands of two of them as they took their last breath. I can tell you that none of that pain comes close to how it feels to have a critically ill child that you can do nothing to help. Where you have been told that they have done all they can do and you will just have to wait. Where you are only allowed to brush their hair because of all the wires, IVs and breathing tubes. These helpless feelings a parent feels can not be described. I can not even imaging the pain that the child feels and their siblings.

Please pray for all of these families and ours to continue to stand strong and trust in the Lord for strength.

All is pretty good in the Osborne camp. The entire family has been through the ringer with the sinus junk that has been going around. Riley is the only one who was able to escape the use of antibiotics. Yes, Josiah even got his first taste of antibiotics this past week after more than ten days of decongestant with no change. We are all slowly pulling out of the funk we have been in.

I have a few pictures and a video to share. There’s more coming, I promise. I am putting together something special from the train trip. It will have some video and still pictures in it. In the meantime, I hope you enjoy the following.

The following picture was taken this weekend. The older boys (me included) have been enjoying the cool outside temperatures.

The next one was taken of Riley and Josiah a few days ago.

Last but not least. A video of Josiah jabbering at Mommy. The movement is caused by the fact that he is laying on the foot stool for the glider rocker. He started hamming it up while Sherry was changing his clothes tonight so I ran and got out the camera.

You might also get a laugh and a smile (if you like a little extra cash in your wallet) from my most recent post over at The Land of Ozz. Here is a snippet:

“It seems that there is a new tax law in South Carolina…I was so shocked by the tax amount, or rather lack of tax, that I called the Wal-Mart store to ask if their registers were malfunctioning.”

I hope you enjoy! Blessings!

The ENT procedure that was planned for Tuesday has been rescheduled for Friday, December 14th.  The MBS will be scheduled for the following Monday the 17th of December.  The operating room was booked up for Tuesday of this week and we were unable to get Caden on the schedule on such short notice after the cardiologist told us that they wanted all of Caden’s outpatient work to be done in the main OR .

Caden is feeling (a little) better.  I actually slept in my own bed all night for the first time in over a week on Sunday night.  There are still tons of goobers, but no fever.  Things are better except for a bunch of whining which tell us that Caden is still not at 100%.  Riley actually sat with his hands over his ears during couch time this evening due to Caden’s whining.   😕

Happy Birthday Caden

Today Caden turns three years old. By the grace of God, Caden lives up to the meaning of his name.

Caden – fighter

Gabriel – God is my strength

Caden and our family continue to fight fueled by strength given from God. This week has shown us some great fun times mixed up with some very difficult ones.

Birthday Fun

The birthday picture on the right was taken last Friday night while Caden and Riley were waiting on a train. That’s right. Riley and Caden got to take a train ride for their birthdays. The trip was a huge answered prayer. Literally, it was an answer to Sherry’s prayers that God provide a way. You might imagine that a trip like this is a little bit above the norm for a birthday present. Our budget was not going to allow for this to happen. I won’t go into specifics, but I can say without a doubt that God answered Sherry’s specific prayer.

Sherry and I came up with the idea as a result of a conversation I had with a friend who took the same trip several years ago with his kids. The trip took us to Savannah where we stayed a night in a hotel. The train ride from Charleston to Savannah was supposed to be a little less than two hours long. The trip took more like five hours. There were several delays as a result of some signal problems. It was really kind of cool. The boys were wonderful even with being up past mid-night. Really, they were awesome. I was pleasantly surprised that a five year old and a three year old could have so much energy and be so well behaved at midnight.

On Saturday we visited the Roundhouse Railroad Museum. This place was great. I’m not sure who had more fun. This picture was taken as we posed on the back of an old caboose. The site of the museum is the former home of the Central Georgia Railway. Construction of this facility began over 175 years ago. This is a must see tourist spot for any family with young children (or adults) who love trains.

We completed our mini family vacation by traveling back to Charleston on Amtrak. The return trip was without delays. This was a good thing because we were all tired.

Struggles this week

The trip to Savannah was not without struggles with Caden’s health. That night in the hotel, Caden popped a fever of about 102. We had been battling fevers for a couple of days with Caden. We decided to proceed with the trip because there seems to never be a “good” time to do anything. We reflected on the past two years. Every single trip we have taken Caden on has left us fighting a fever. Whether it was a trip to see Grandma and Grandpa in Atlanta, to see Nana and Aunt Becke, to go to the mountains, or just to the zoo in Columbia, we have dealt with a fever on the road every single time we have traveled an hour or more from home. We realized this months ago, but have not been able to tie the fevers to a specific problem. In the end, Riley and Caden did have a great time on the train trip to Savannah and that was the primary goal of the trip.

The beginning of this week gave us a glimpse of one of the best days that Caden has seen in the past week and a half. He was energetic and happy. He tolerated all of his feedings just fine. That was the last day of fun this week. The remainder of the week up until Thursday seemed to worsen. Caden ended up in the pediatrician’s office on Thursday morning with a severe cough, fever, and massive amounts of goobers. We ask for your prayers as Caden continues to be attacked with sinus and ear infections.

ENT Update – and more on Cardiology

We are hoping that the ENT procedure will be able to happen on Tuesday as planned. This is our last chance this year to get all the right people scheduled for this dilation and MBS. I failed to mention last week that cardiology has put a restriction on all outpatient procedures for Caden. The cardiologists want all of Caden’s work outpatient or otherwise to be done in the main OR at MUSC. They said they wanted their anesthesiologist to be involved in all of Caden’s procedures and wanted him close during any procedures “just in case”.

Please forgive me if I have sound a little discouraged tonight. We are all tired. While today is Caden’s birthday, we are not planning to party until next week. It was planned this way to give some room between the boys’ parties to keep family from having to travel back so soon. We are just having family and a few kids that Riley and Caden regularly play with. I think we had barely ten kids including Riley, Caden, and Josiah at Riley’s party.

Thank you for your prayers. We treasure your support. Blessings to you and yours!

Answered Prayer

Caden had his six month cardiology check up today. The appointment came complete with an EKG and an echo cardiogram. The results of the visit seemed to surprise the cardiologist and it lifted a huge weight off of our shoulders. Sherry and I both had trouble sleeping last night. The past few weeks left us contemplating what the cardiologist were expecting to see after they put the brakes on a fairly simple outpatient procedure. The news from the visit was great. We were told yesterday by phone that Caden would require sedation for the echo. That was not the case after all. Caden displayed great self control during the visit and allowed the technician to get accurate data without having Caden sedated. This is just one small example of how applying the principles taught in Growing Kids God’s Way can help a medically challenged child have a better day at the doctor’s office.

As for the specific results from today, the pressure gradient across the aortic valve has not changed hardly at all in six months. If we understood them correctly, it may have even gone down a tad bit. 😉 This means that Caden’s heart is not having to work any harder today than it was working in April. Praise God! This left the cardiologist to clear Caden for the ENT procedure. We hoped for this and had already rescheduled the procedure for the week after Caden’s birthday.

Promised Video

The following video shows some of the events from a fairly typical evening routine for Caden. The beginning of the video shows Caden at the dinner table as we finish up dinner. Caden is tasting some leftover sauce (strong flavors) from a dinner while he is getting his tube feed. You can hear the rhythmic sound of the pump in the background if you listen carefully. You will then see a short clip of Caden getting suctioned. It is not fun, but it is how we help him keep from aspirating secretions. Next you will see a short clip of Caden playing with his shirt off. This shows how thin his upper body has become which has led to many comments about his weight. You will also get a rare glimpse at what the g-tube button looks like. This is where we attach the feeding tube extension to deliver formula, water, and medications. You will also get a quick look at his back. If you look carefully, you will see the curvature of his spin. The video ends with a picture of me giving Caden his water and medicine just before bed. He gets about 150 ml of water three times per day in addition to the 750 ml of formula. The formula is highly concentrated and gives Caden a total of 1500 calories per day.

One of Caden’s big appointments for the month is behind us. The results were mixed from my perspective. The good news is that we misunderstood the severity of Caden’s diagnosis last year. It seems that the severity of the curvature was less than we had thought. The bad news is that the curvature has progressed and is near to the 40 degrees that we thought we were at for the past year. The change has been much less drastic, but none the less there are signs of progression. The readings from last year were nearer to 35 degrees and have increased by less than 5 degrees to almost 40 now.

What this all led up to was the doctor saying, “it is only a matter of time until surgery will be needed for Caden’s back.” He estimates roughly somewhere between two and five years before surgery would be required form his perspective. We talked about how a brace might help and the doctor said that a brace would only buy time before surgery would be needed. He said that braces are never the cure for a case like this. Ultimately his advice on braces was, “let Caden be a kid.” We like this attitude a lot. He does not believe the curvature is currently causing any problems with heart and lung growth. He also does not believe that there’s any pain associated with the curvature.According to him, most pain from scoliosis comes in older patients in the form of arthritis.

Caden did see endocrinology since my last post. This appointment was pretty much a non-event. Caden’s calcium has been decreased slightly and his feeds have been increased.

There have been several comments lately about Caden’s weight. Caden appears to be loosing weight to some folks. While Caden has not really lost weight, he has not been gaining any either. We believe that this fact coupled with his growth in height has him thinning out especially in the upper body. Caden has hovered around 30 pounds for about six months now while growing a good bit in height. I have some video footage of him playing without a shirt on that will give you a glimpse of Caden’s upper body and even a look at his back. I will post the video later.

We feel that we have made some ground on oral stimulation and speech lately even though Caden is in a transition between therapists. Caden continues to explore foods by tasting (not swallowing of course). He is getting his teeth brushed every evening. Allowing us to put a toothbrush in the back of his cheek is a big deal. He is also progressing quite nicely with his signing and vocal skills. I will be adding some more video very soon that shows a couple of different snippets is jabbering quite a bit. Sherry has been working with Riley on some explicit phonics. Caden mimics every sound that Riley makes and Sherry says that Caden is coming surprisingly close on many of the sounds.

Little Brother Update

Josiah continues to grow like a weed. I think the words of the pediatrician included “chubby”. The pediatrician loved the weight gain and was glad to hear we are nearing the “sleeping through the night” goal. Josiah has made it through the night a few nights this past week without a feeding. YEAH!!! The entire house is resting better.

Happy Birthday Big Boy Riley

Riley will reach his long anticipated 5th birthday on Thursday. Riley has wanted to be five years old for nearly three years now. The number five used to be his favorite number until I turned him on to NASCAR. Now he has about 43 favorite numbers every week. I usually get him up from his nap/rest time for the last 30-40 laps. He gets a lot of the cooking channel during commercials. His future bride is going to love his knowledge of the kitchen. 😉

Some other cools things going on with Riley is his ability to count to 100.  I told Sherry that he had counted to a hundred for the first time a few weeks ago.  She said that if I would get him counting to 100 by tens then she could start working on teaching him some math things that require that skill as a prerequisite.  The next day he was counting to 100 by tens and a few days later I ask him if he could count backwards to zero from 100 and he did it on the spot.  I think Riley has a strong dose of the same gifts I do in the area of math skills.

Prayer Request

Many of you continue to pray for us regularly and we are so grateful. God has surrounded us with an amazing collection of His saints. We need you as much as ever in this next week as we approach Caden’s cardiology appointment. Satan has tried to slip in and work off of our fears. The fact that cardiology would not allow a very simple outpatient procedure has opened the door for all sorts of thoughts. I won’t share the specific thoughts and conversations Sherry and I have had because there is no benefit in sharing that and we desire to speak words of life into this situation. We have been working to guard our own words now that we realize what is happening though these fears that have been cropping up for both of us.

This may sound weird to some, but bear with me.  I shared with Sherry a couple of nights ago that I have had a very real sensation of Caden’s back being straight. I have felt his back as I prayed with him by running my hands up and down his spine. There have been a few times where his back has felt straight while praying. It has been so encouraging that it has brought tears to my eyes. To feel this and to know that this is what God is going to do in the future is wonderful. How or when, I don’t know, but Caden’s back will be straightened. I am sure of it.

I ask you to pray for God’s supernatural power to be shown through the healing of Caden’s body to the point that it even surprises you and I who already believe. Ask God to surprise us all with his response to our prayers. Sherry and I get surprised regularly with how God answers our prayers. Please continue to pray with us in this next week in particular as we approach the cardiology visit.

Answered Prayer

Caden has not one new 1-on-1 Shepard at church, but two. Well, sort of. One lady will be working with Sherry this coming Sunday to become familiar with Caden so she can be his primary Shepard. Another lady is taking over as the 1-on-1 program coordinator at Seacoast Summerville and wants to get familiarized with Caden’s care so she can serve as an alternate. Praise God!!!