Sunday, August 28, 2005

 

Big Weekend

It was a big weekend for our family because we made our first trip to see Grandma and Grandpa in over a year. This was a big trip for us all because it meant traveling for more than 10 hours round trip in the car to get there and back. All went well with the travel even though it took more like twlve hours round trip due to potty and food stops.

The vist was great. We all went out on Saturday afternoon to the Atlanta Children's Museum. Sherry took Riley there last year while I was on travel to California so this was a first for Caden and me. We had a blast. Riley had the most fun. We took plenty of pictures and many of them are on Caden's picture page. Caden had a great time too.

I have to share a story about Riley. He was playing in the area of the museum where they have food, a delivery truck replica and fork lift replica. We went up into the front of the truck where there was a little boy sitting on the seat pretending to drive while a lady that I am guessing was his grandmother watched him through the window. Riley sat down with his box of toy strawberries in the middle of the seat and I sat on passenger side of the bench seat of this full-size replica of a delivery truck. Riley looked at the little boy and said, "he's going to drive." I said, "great Riley, where are we going?" Riley responded, "we gone go to the hospital." With all the concern in the world the little boy's grandmother said, "Oh my Lord!, is everything okay?" It was all I could do to keep from wetting my pants at this point I started laughing so hard. Riley has a thing about going to the hospital. Almost every time we say we are going bye-bye, he says, "We gone go hospital?" I guess the number of trips that we have made to the hospital in the past year have really made an impression on him. This lady had no clue why Riley thought of going to the hospital and I could not gather myself up enough to tell her.

Sherry and I got a date for the first time in a while. We went to eat at one of our faorite Italian resturants Johnny Carino's in Newnan, GA. This is a chain that is just getting started and it is fabulaous. By the way, I am not getting paid to say that or link to their site. Sherry and I then went to see a move, "Must Love Dogs". I came very close to wetting myself due to laughter for a second time in less than twelve hours during this movie. Need I say more? It has been out over a month and you need to see this if you have not yet.

Emory
Our friend Emory not only got his shunt placed on Friday, he is already home form the hospital. His family had to wait an extended amount of time on Friday and that raised the stress a bit for them, but they made it through. Here is a little bit from Stephanie's email to Sherry.
"God was with us and our precious boy today as always, and we are so happy that this step is behind us."

Praise God for another answered prayer.

Drakes
I just keeps getting better. Prasie God, the Drake twins are coming home togther tomorrow from the hospital. Here is what Amy said in an email annoucung the great news:
"I have said a lot about how God has been with us through everything that has gone on, and the fact that these babies have been feeding and growing so well to come home together is nothing short of a miracle in our eyes. We are so thankful to our Father in heaven and rejoice that our family has been so incredibly blessed. Some people have commented to me that I’m amazing to handle what I have been, but my strength has not come from myself. This is one of my favorite bible verses:

…but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not be weary, and they will walk and not be faint. Isaiah 40:31 (NIV)"

A final treat
Well, it has been along day and a long weekend. I want to share about 30 seconds of video footage that I took of Caden while at the museum in Atlanta this weekend. You can certainly tell that he's having a good time. Don't forget to check out the dozens of pictures that I posted today. I did not put a caption on all of them since there were so many today. Enjoy!

You should only click on this MOV05570.MPG video file of Caden if you have a fast connection or a lot of time to wait. This 30 second clip is about 13MB, but worth the wait.

It's hard to imaging that less than ten months ago the cardiologists at MUSC were arguing over whether Caden would survive the heart surgery. Sherry was told this week that Caden's name came up in a meeting among some doctors. Caden's heart defect was rare enough that his case is talked about often especially given his remarkable recovery and growth.

It is time to start Caden's last meal of the evening. We can then all get some rest after this long and exciting weekend.

Friday, August 26, 2005

 

A Good Day

Yesterday was really good. Caden went for his 9 month check-up at the pediatrician. He weighed in at 17 lb 8 oz and also received his 4 months shots. He is still pretty far behind on shots due to immune concerns. Caden will have more blood work done while sedated for the botox next week to see is his immune system has improved since the last blood work done during the Nissen in June. We hope that all is well and can get him some live vaccines in the fall before the cold season really kicks in.

Riley had a big day yesterday. Riley went to the dentist for the very first time yesterday. Below is a picture of him getting his teeth checked out.

The best part of the day for Riley was the gravy biscuits at Hardee's after the dentist appointment where he got to see two trains go by while eating. He also got a new toothbrush with a cover that he loves.

Yesterday was a good day for our friend Emory. He had some test that all went good and he is cleared for surgery today to place the shunt. Please pray for Emory today and ask for God's protection over this little boy.

Praise God, our little friend Hailey passed a swallow study yesterday for solid foods and is cleared for baby food by mouth now.

The Drake twins are headed home. They reached eight feedings by mouth yesterday and will get to come home after a couple of more days of monitoring.

I got several emails from friends and family over the past day and a half. The emails have all been very uplifting and supportive. So many people have assured us that they are there praying for us. Many of them with their own overwhelming issues to deal with at times. I thank you for sharing those things. As much as I talk to God these days it is a really good idea to let me know what you need to pray for becasue you will get a ton more prayer that way. We thank you for including us in your family. I thank you all so much for your love and support. I read this morning 1 Corinthians 13. I believe the last verse of that chapter went something like this in The Living Bible, " The most important things we have are faith, hope, and love. The most important is Love." Thank you for your love. You have ours too.

These are all great things that we can thank God for today. Have a great day.

God Bless!

Wednesday, August 24, 2005

 

2nd Botox Date and more

Caden is on the schedule for September 2, 2005 for his next botox treatment. We do not have a time, but this visit is going to be outpatient. They will have to sedate Caden but they are more comfortable with his recovery from anesthesia after his last two procedures with no complication with the anesthesia.

Follow up to last posting
I feel like it is necessary to give an apologize for sounding so down and out in my last posting. Sherry and I got many responses and most were apologies for reading but not contacting us. It's okay. I really was not trying to put a guilt burden on anyone. As Sherry says it best, "It really is not other people's responsibility to lift us up."

My last posting is much like many of my normal everyday conversations. I really could have said things better. I much more of a thinker than speaker in most cases. Our friend Stephanie emailed Sherry and nailed my feelings pretty good. Stephanie is Emory's mom and she knows exactly what I was trying to say even though I didn't do as good of a job saying it as she did. Here is a piece of her email to Sherry:
I feel that some people in our lives feel like "Now what's wrong?" about us too. It's weird when people ask you how things are going because there's never a simple response and you don't know if they really want to hear all of the gory details or not!... ...you have to worry about how much the people you're talking to really understands about what you're saying. It's a mess...that's just one more reason that it's so great that we have each other!

Yeah...What she said, that's what I meant to say. Stephanie is right. I never really know what to say when someone asks how things are for that exact reason.

Sherry has recently been talking to several other parents of children with unique health issues. These interactions with other moms plus some other things we have encountered recently have enlightened us to how thankful we should be for the circumstances we have. There are families with much worse situations than us. Sherry is also learning that the emotions and struggles we go through on a weekly basis are a VERY common theme among families with unique health concerns with their children. Sherry told me tonight that within a few short minutes of conversation with other moms she finds herself hearing her feelings being verbalized by other moms who are living almost the exact life that we are living on so many different levels. We are amazed at how many people are living a very similar life with some of the exact same concerns we face on a day to day basis. Maybe the fact that we share our feeligns makes it easier for others to share their feelings with us. Regardless of the reason, it is alarming to hear that so many people struggle with such similar emotions and problems as we do.

I hope that was not too heavy for you. Please don't take my moaning and groaning too personally. I just get caught up in the emotions of all the things... See you were getting that deer in the headlights look that I see when telling people how I am really doing.

Anyway things are okay, really! Oh, and Riley's leg problem seems to have disappeared as quickly as it came. Thanks to Stacey for reminding me to tell you about Riley. A co-worker who follows Caden's Page suggested that it could have just been some growing pains. That sounds reasonable enough for me because nothing else made any sense.

Sherry got out of the house tonight for a while to go visit the Drake twins at the hospital. She got to hold one of them and came back glowing. The twins are both doing great and should be discharged soon.

I will probably not have time to post tomorrow and I wanted to remind you about Emory. He is scheduled for surgery on Friday. The surgery is up in the air right now because he got some test run at a pre-op visit today that has raised some concerns. Please pray for Emory and his family. They need clarity in what is wrong with him right now so that the problem can be cleared up and allow for him to get his surgery. Emory needs to get this surgery done so that he can move forward and maximize his developmental potential.

Thanks for all of your prayer and support for us and for our friends. Your prayers are being answered. You can read about the answered over and over again in these pages. Please praise God for these friends who have landed in our lives who give us a sense of understanding about our emotions. Thanks for the emails. Sherry and I both share the same love language and that is words of encouragement. Some of the emails we have recieved lately are just what the doctor ordered.

One other thing...I posted about 10 new pictures of Caden this evening.

Enjoy! God Bless!

Sunday, August 21, 2005

 

Moving Forward

Caden is doing really good. He is growing like a weed, over 17.5 lbs now, and seems as happy as ever. Caden is still getting very little food by mouth. We still feed him for nutrition totally by g-tube and have to suction him quite a bit during awake hours. He does make it mostly through the night without needing suctioning which allows for Sherry and I to go to bed together and use the baby monitor. We do not have a date on the next botox treatment, but we will keep you posted.

Sherry and I have been struggling again with whether or not to continue posting to Caden's Page. We very seldom get responses and kind of feel like a circus act at times where people just look in but never say anything. We prayed about it and God answered our prayers. I felt like it was a pretty clear answer. Pastor Greg asked a fellow pastor how God spoke to him. I fell like I got a few very clear responses from God this weekend myself. It was only a few hours after asking God to give me some guidance on Caden's Page when I check my email and found the following from Ryan in Minnesota. By the way, unknown by me, this email was already in my email inbox when asking God for some guidance on this subject.

"...a verse my mother had dedicated to me as a child.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

This blows me away I needed to be reminded of my future and I also got to hear of your sons story and I must say there is a reason for this. I will be sending his story to people I know and praying for Caden and your family as much as I can. I hope and pray things will be better and stay strong in your faith
God Bless you Caden and keep you in his graces
and Bless the family as well
Amen
thank you
Ryan"


I emailed Ryan back and told him that his message came very shortly after discussing the end of Caden's Page with Sherry and praying about it. Ryan encouraged me and assured me with this response:

You should continue to update Cadens page don't quit now. It only takes a little time and it shouldnt cost anything to maintain a webpage. The Lord is with your son and your family Hank and if even 1 person comes to know the Lord because of Cadens story then its worth keeping the page updated in fact there is no question. I will be giving my mom and dad the site to look at and they will let everyone in MN they know as well. So I'm sure the somehow things will work out thru prayer!


I believe that God has spoken to me through Ryan this weekend and I will continue posting to Caden's Page. Thank you Ryan for delivering such an important message!


News on other Cool Kids
Emory is the little boy that I wrote about a few days ago. His mom recently told us that it was okay to post his name. We feel it is important for you to put a name with your prayers. Emory had the MRI last week that many of you prayed would be possible without sedation and it was completed without sedation. During the MRI Emory was diagnosed with Hydrocephalous. It is my understanding that this is when fluid gathers around the brain and can cause the brain not to grow as expected. We want you to pray for Emory this week. He is going in Friday for a surgical procedure. Emory is getting a shunt placed under the skin of his scalp to drain fluid of off the brain. This is to relieve pressure on the brain to allow for more normal brain growth. This is a shunt that he will have for the rest of his life. Please pray for protection over Emory and for peace for Emory's Mom, Dad, and older sister.

I am saddened to report a little girl named Ella has passed away. She was just a few months old and was in line to get a parathyroid transplant at Duke this week to repair her immune system. This is the same transplant that Caden's friend Hailey had earlier this year. Please pray for Ella's family in this time of loss.

Hailey's parents track Caden and a few other kids. They report on them on their Care Page sponsored by the Children's Hospital of Boston. Hailey is about a month older than Caden and is going to be celebrating her 1st birthday in grand style in about six weeks up in Massachusetts. Please join us in wishing her a happy birthday. Hailey is another living example of God's power to heal. These kids diagnosed with DiGeorge are living miracles of God's awesome power.

Pictures and Heart Walk
Don't forget to scroll down to view the last two postings since the last email update was sent out. There are new pictures as well as more information on the Low Country Heart Walk. You may also want to check out a story about another answered prayer of mine this weekend on my personal blog called The Land of Ozz. I also posted a link to a blog run by a few MUSC medical students that was featured in the local Charleston paper today.

God Bless.

Thursday, August 18, 2005

 

New Pictures

Click HERE for the lastest pictures.

 

2005 Lowcountry Heart Walk

Check out The Land Of Ozz for for more details on this upcoming event.

Thanks,
Hank O

Tuesday, August 16, 2005

 

More Botox

We met with the ENT (ear, nose, and throat) doctor today about Caden's swallowing functionality. While everyone is pleased with the results of the recent barium swallow, they do not believe he has a functional problem swallowing. He is going through all of the motions correctly, but he seems to only be able to pass very little bits at a time by mouth. The answer from the therapists and the ENT doctor is to retreat his upper esophagus muscle with botox. The ENT went very conservative on the first dose given the fact that Caden was her youngest and most severe case in children ever. The bottom line is that we are moving forward with another botox treatment within the next month.

Praise God, the really good news is that Caden is able to sleep for upwards of 6 to 7 hours without needing suctioning at night now. This is allowing for Sherry to take care of Caden through the night whether I am on travel or not. It will still be rough for her when I travel because she has a very short list of people who can watch Caden and Riley to give her a break when I am not around. The sitter that she used for a good bit of the summer has gone back off to college for the fall as of this week. I am able to get into work at an earlier hour (like normal folks) and not have to work from home in the middle of the night or stay later in the evening. I travel last week and Caden was not quite sleeping through the night without suctioning, but At least Sherry had a little help with from the sitter before she left for college.

I think it is important to add a few notes on the swallowing thing. While Caden is swallowing, it is a very tedious process to get him to do so. It takes upwards of 20-25 minutes to get him to swallow less than a teaspoonful of food. We tie it into his normal feeding time, but we have to stay right with him to make sure he gets it down. It is a very tiring process.

In other news today, we had to take Riley in to the pediatrician. He all of a sudden started limping on his right leg and even falling to a crawl at times. He had played in his room for a little while out of Sherry's sight but no sounds of falling or crying were ever heard. He just started limping and would not touch anything other than his toes to the floor. We have no clue what caused the limp, and Riley could only tell us where it hurt and not able to answer any of the how, when, where, or what hurt him. I met Sherry at the pediatrician and they were not able to find anything conclusive so they recommended he go for x-rays from the hip to the knee. Nothing came out of the x-rays either. We even asked if he might be faking it due to all the attention Caden is getting from doctors and they said that a two-year old does not fake it like that. I sat him down in the doctor's office as we checked out and he immediately fell to his knees and started to crawl to the room where the video tape was playing. He did get up part of the way there and limped the remainder of the distance. I had to teach this evening, but Sherry said that he seemed better after some Motrin and rest. We were instructed to just watch him for other symptoms for now and give him some Motrin for pain.

What is it with us? Do we have a big welcome message written on our foreheads for stress? Sherry and I prayed together this morning as we try to do everyday. Today was particularly important because we had a friend request that we pray for their family. We did so and also prayed for our family. The prayers for our friends were answered in that they were able to get an MRI with no sedation today. The results were of the MRI were also pretty clear, but not what they expected for their child's diagnosis. Many of you got the forwarded email prayer request, I want you to know that your prayers were answered today for our friends.

For us, for some strange reason we are not getting the peace from God that we are asking for in our home. I can not tell you how stressed I got when hearing from Sherry today that Riley was having problems walking. My immediate reaction was, "God, what next?" I am ready for some peace I tell you. I have already had one emotional meltdown in the past three days and I am not sure I will make it a week without another. My work trip last week was only for a few nights, but it was extremely stressful knowing that Sherry was having to run the entire night without me here to assist. At that point Caden was not making it though this night yet without needing suctioning. He ahs cut two new teeth in the past week and that has greatly increased his secretions. His not druling at all. It all goes back and then come back out his nose for some strange reason. That has caused more suctioning in the past week. I got back from my trip and within a few days Sherry and I both had a meltdown over the stress. We talked with some famiy members this weekend who asked how our relationship was holding up. It is holding up mainly because we are able to see that our stress is not with each other, but rather the stressful situations that our family ends up in as a result of our circumstances.

Please keep us in your prayers. With Caden's lingering heart issues, next botox treatment, Riley's leg, work stress, finances, and plain old exhaustion, I need a relief and so does Sherry. We don't want much, just a personal assistant/receptionist to handle Caden's appointments, a full-time maid, chef, nanny, and a line of qualified care givers for Caden would fix us right up. Oh, and a winning jackpot lottery ticket to pay for all of this. Heck, just the winning lottery ticket would take care of it since I could afford to just stay home and help take the load that Sherry has to endure solo. Maybe our name will pop up in the will of a long lost aunt or uncle who is loaded and thinks that we are the greatest thing since sliced bread. Seriously, please just keep us in our prayers. We don't have the worst circumstances in the world, but it sure seems like it at moments. We know that we are blessed to have what we do and we are thankful to God for all of it including the odd circumstances that link us up to people that we might not ever meet otherwise.

Monday, August 15, 2005

 

Swallowing Slowly Improving

The end of the week went slow. We ended up taking Caden into the pediatrician on Friday morning due to excessive congestion. Sherry feared that Caden might have aspirated on some of his oral food, but that was not the case. Caden just has a little cold or he is having some kind of allergic reaction to something in the house that has his nose running. This caused an excessive amount of suctioning until Friday night when we got him started on Zyrtec and some cough medicine. Oh, and he cut two more teeth over the past few days and we are sure that helped add to the secretions.

Now things have settled down. Caden went several hours Saturday night without needing suctioning. This is a BIG deal. This type of swallowing functionality by Caden is allowing for Sherry and me to get ever so closer to a "normal" household life. The swallowing is coming, it just is not coming the way and as fast as we thought it would after the botox.

Heart
Sherry and I have become rather disturbed with Caden's heart diagnosis recently. We have known for a while that Caden had things that might need attention in the future. Well, it appear from conversations with Caden's pediatrician that the ASD (hole between the atriums) can be a little more serious than we thought if not treated in a timely manner. Even the cardiologist has mentioned how this repair depends greatly on timing. The timing involves life threatening alternatives if the ASD is not repaired within the right timing. The ASD could normally be fixed via a catheter, but Caden also has a bicuspid aortic valve. We are being told that this valve will need to be replaced at some point in the future, but no specific timing has been given. The disturbing this is that this valve can not be replaced without an open-heart surgery. Furthermore, once it is replaced with a mechanical or donor valve it will need to be upgraded/replaced again as Caden grows. We plan to sit down with the cardiologist in the next week to get a little clearer picture of what needs to be done with Caden’s heart. Right now Caden is not scheduled for another cardiologist visit until February. After our conversation with the pediatrician we want to know why they are not watching Caden a little closer.

We are not sure why we are just now getting enlightened to these heart issues. Maybe we got too caught up in other things and just misunderstood, but I don't think so. We have learned that Caden's initial surgery was a much higher risk than we were made to believe. Maybe they held back on giving us the details of potential future heart repair because they did not expect such an awesome outcome from the first heart surgery. The cardiologist was picking his chin up off the floor when he saw Caden sitting up by himself on the examination table at a whopping 17 pounds and 29 inches long.

Please keep Sherry and me in your prayers as we enquire about Caden's heart condition. We need to make sure we are asking the right questions because it appears that information may not always get volunteered in a timely manner. We love the MUSC cardiology department, but we constantly have to work to get answers as with many other areas of Caden's care.

Other Stuff
I want to give a big thanks to the fans of the Oak Ridge Boys for following Caden's progress.

Keep an eye out for more informaiton in the 2005 Lowcountry Heart Walk coming up next month. You can join Caden's Team to raise money for this event by clicking the link at the top of this page. I will post more inforamtion on this in the next week.

Thanks a bunch.

Thursday, August 11, 2005

 

I Told You So

Praise God! The day has come. Our father in heaven has once again showered us with his blessings. I told you that the subject line would read "I Told You So" and it does as I wrote about in my July 7th posting titled "God is Great". The healing has been delivered. Caden has passed a MBS (modified barium swallow) study for the first time and he has been cleared by the doctors and therapists to begin taking food by mouth immediately. Aunt Addie reminded me recently that she was waiting on this subject line. I had almost forgot about it, but praise God the day has come to use those words. I told you that God would provide and he has once again held to his promises. May we all rejoice and give God the glory for this answer to so many prayers. For it is written:

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you." Matthew 7:7 (NIV)


We had almost lost hope this week. Sherry and I truly though that this past weekend would have been when we turned off the suction machine for the last time. We began to become very discouraged when it did not happen that way. We talked openly about our frustration as late as Tuesday evening. Caden had shown improvement over the weekend, but not enough in our opinion to get excited about.

While I say there was not enough to get excited about, we did transition Caden to sleeping in his own room alone this past weekend for the first time in over six months. Sherry and I started sleeping in the same bed at the same time for the first time in almost a year. We did this \due to the improvements we have seen since the botox treatments. Caden still gets "junky" enough to require suctioning, but he has gone as long as five hours without needing to be suctioned. We are now just taking turns with the baby monitor on either side of the bed so that we can be awakened by Caden stirring when he needs to be suctioned.

Caden swallowed both thin liquids and some apple sauce mixed with barium on Wednesday morning. The amounts that he swallowed on each attempt was small, but by far enough for the doctors and therapists to be ecstatic about the results. Sherry even took Caden's in-home speech therapist with her to the appointment at MUSC on Wednesday so that everyone could be on the same sheet of music with the next steps in Caden's move to oral feedings.

What does this mean to us exactly? Well, the amount that Caden is able to take by mouth right now is very small and very difficult for him to handle physiologically. Remember that what this little boy is doing for the first time at nine months of age is what most kids figure out within the first hour after birth. From Sherry's description of today's MBS, it sounds like Caden took no more than a few milliliters of food or liquid on the swallowing attempts today and the process was a lot of work for him.

Our short term goal is to get Caden's swallowing functionality up to a point where he needs no more suctioning at all. This will be a great quality of life improvement for him as well as the rest of our family. Caden will remain on g-tube feedings until he is able to sustain his own weight and growth. Even then, he is expected to maintain a g-tube for relieving any upset stomach issues since his Nissen procedure prevents him from burping or vomiting.

Please stop and say a prayer of thanks to God for his promises delivered. God ahs come through for us this week. He has also looked over the Drake family in the past week as Amy gave birth to her little ones on Friday evening. Both children are still in the hospital, but requiring less special medical care by the day. Praise God that both children are breathing without any help and begining to eat a normal diet. Amy was discharged several days ago and is reported as doing good as well.

Please continue to pray for our family. There are needs that are not directly related to Caden's health that we need prayer for today. I won't go into it now, but I just ask for you to pray for God's will to be made clear to Sherry and me in the coming weeks. I know God has a perfect plan for our situation and I know that God will provide the perfect solution for him.

God is Great! I told you so.

Friday, August 05, 2005

 

Caden is home

Caden got home in record time. He was home well before noon on Thursday. I am sorry I missed doing and update last night due to plain old exhaustion on my part.

I will keep you posted as things progress with Caden's swallowing.


Drakes
Amy has been transferred to MUSC. Her water broke last night. She is at 31 weeks 4 days. She is doing okay other than being stuck in the hospital now. The babies are looking good and the doctors are just going to let her body decide when it is time to deliver.

Wednesday, August 03, 2005

 

Doing Great after Botox

Caden is in his own room in the MUSC children's hospital. Well, his own shared room. This placed is packed. Caden had to wait for several extra hours in the recovery room until they discharged someone to free up a bed. This is Caden's first stay at MUSC where he did not get put in a unit for cardiac babies. We expect to be out of here by late morning. Caden was back on partial tube feedings before he even left the recovery room this morning. He was back up to a full tube feed by the afternoon and they pulled his IV.

I have a picture of Caden's esophagus that was taken by the doctor today during the procedure. I don't have my picture scanner here at the hospital or I would share it with you. The doctor said that she knew that Caden's muscle at the top of his esophagus would be big, but she said a better word to describe his muscle is gargantuan. She injected botox into it in two separate places. She expects the botox to take effect in 48 to 72 hours.

In other big news today, Sherry got our blood test results back from the genetics screening. This was to check to see if Sherry or I gave Caden DiGeorge Syndrome. Neither of us has DiGeorge and the geneticist said there is no reason to test anyone else in the family. Caden seems to have got DiGeorge the same way over 90% of DiGeorge kids get it which is an anomaly during the first trimester that causes the micro deletion on the 22nd chromosome.

Thank you for praying for Caden today. God has answered and protected this little boy as you have asked. To God be the glory for the work done here today. Caden came through this procedure without any complications. Please continue to pray that this botox treatment will take affect in just a perfect way. We want to put away that suction machine this weekend for good.

Caden will get another MBS (Modified Barium Swallow) next Wednesday. This will document the new swallowing skills that Caden will gain from this botox and clear Caden to start working with speech and occupational therapy to take food by mouth for the first time ever.

Thanks a bunch for keeping up with Caden's progress and continuing to pray for him and our family.

Happy nine months to Caden on August 2nd. This picture was taken this evening. As you can see, Caden is in a great mode.

 

Caden is doing great!

Caden is doing great! Off breating machine. No complications. More later. Hank


Tuesday, August 02, 2005

 

Show Time for Botox

We were notified late this afternoon that Caden is the first case tomorrow morning. We have to be at MUSC at 6am. They will begin with him around 7am and the botox procedure should take approximately two hours. I will try to get a posting up when he is in his room and settled in. Look for another short update in the afternoon on Wednesday to learn the details of Caden's condition.

I would have posted this earlier this evening, but I just got home from my first night on my new part-time job as an instructor at a local college. Things went great there. I believe this will be one of the most rewarding part-time jobs I have ever had.

Please continue to pray for Caden especially in the morning.

Thanks a bunch...God Bless...Hank

Monday, August 01, 2005

 

Root of Caden's Fussiness

It appears that Caden's g-tube was malfunctioning and causing him some discomfort. I got home today and Sherry asked me to look at it because it just did not look right. Per the instruction manual I tried deflating the balloon that holds the tube in place. This would tell me if the balloon had the correct amount of filler (sterile water). What I got in the syringe was not sterile water. It appears that the balloon failed(burst) and it was irritating Caden since it was not being held in the correct position by the balloon. I replaced the button style g-tube fitting with his old g-tube that we have as a spare. Sherry, bless her heart, was in about as much discomfort as Caden. She's not a big fan of the tube changing process. It was all she could do to hold Caden’s hands out of my way (eyes closed) while I changed the tube.

I called MUSC to make sure I knew what to look for to verify the tube was placed correctly. The lady that works these issues gave me some concrete things to look for and then she said it sounded like I had done things just fine. Caden just finished his 8pm feeding a little while ago and did not blink from his sleep while getting fed. I will pick up a new button on Wednesday while at MUSC. The button style g-tube is a cool device and we like it much better than the old tube.

There have been no more signs of fever. It looks like we are on for Wednesday's botox treatment. We do not have a time for the procedure yet, but we did not expect to get the show time until tomorrow anyway.

Please keep Sherry and me in your prayers in the next two days. We both tend to get very nervous when it comes to having invasive tests, surgeries, or procedures done. This botox thing is no different. They will be basically injecting a poison into Caden's upper esophagus sphincter. (AES) This is very near to the vocal cords and muscles that are used to close off and protect the airway. Sherry openly admitted that the fear factor is sneaking in again. As many of you know this has been our toughest battle over the past year. Please pray for us to remember my favorite verse in the next few days.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7 (KJV)


Drakes
Please keep the Drakes in your prayers tonight as well. Mom is in the hospital again and having contractions. She is also dilating a little this time. A normal OB visit landed her in the hospital today for observation. She is at approximately 31 weeks in her pregnancy carrying twins. The Dad and I are going to Promise Keepers this weekend in North Charleston. God willing and the creek don't rise.

God bless you all. Thank you again for your prayer and support.

 

New Pictures 7/19 - 7/17/2005

Caden may have caught the bug that has been going around our house. He has been fussy, congested, and running a low-grade fever. We are keeping an eye on him and will keep you posted. We pray that the fever goes away quickly so it does not impact the botox treatment on Wednesday. The botox could really help with the congestion since we are having to suction Caden more frequently because of the congestion and runny nose.

I added new pictures tonight. I have not found a new gallery software package that does what I want so I am playing with what I have a little. Click the image below to go to the new picture page.



Thank you for your prayers and support. Don't forget to check out the previous two postings below that have been added since the last email notice.

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