Caden’s Page

The list of appointments this week was long, but they all ended with positive results. First we had a visit with Sherry’s OB. All is going great with the pregnancy. Even though this pregnancy is going great, they still want a fetal echo cardiogram. The first reason for offering this was to ease our minds about the status of this baby’s heart. I guess the normal human response is to fear for a repeat of past pregnancies where heart defects were found. Since we showed no signs of concern, they said there would be no reason for a fetal echo. Now they have changed their minds. Now the reason is most likely stemming from what Sherry and I like to call lawyer medicine. It’s okay, we are not fighting them. We agreed to the echo.

Our next stop this week was with Caden’s peds cardiology appointment. The first surprise there was to find that Caden topped the scales at over 30 pounds. Keep in mind that this child will be only 2 1/2 years old this week. It took Riley until he was 3 years old to pass the 30 pound mark. The visit went forward without a hitch. Caden’s heart is doing great. He did get an echo cardiogram done so they could see how past repairs are holding up and see how Caden’s aortic valve is functioning. The repairs are holding up great. The valve is not causing any alarms and the want to continue a six month visit routine to watch the valve. The pacemaker has become pretty much a non issue. The only motivation to take it out right now would be to get an MRI on Caden’s spine. The MRI results would be helpful but not critical since the diagnosis of scoliosis did not show any life threatening or physical restrictions for Caden. The result of the pacemaker decision is that we plan to leave it in. There is no danger of leaving it in place. It can always be removed if/when an aortic valve replacement is needed. The cardiologist believe that a valve replacement is inevitable.

Caden has been cleared by cardiology to receive a Z-plasty. This is a procedure to aid Caden in his ability to speak. The primary symptom of the diagnosis of a sub mucus cleft palette prevents Caden from clearly speaking. We were cautiously optimistic about whether cardiology would sign off for Caden to get any other procedures requiring anesthesia without having the pacemaker repaired. Thank God they have move past the desire to repair the pacemaker. They now agree that it just needs to be removed.

The last big appointment of the week was for Caden to see an allergist. The results were mixed and we need some blood work to confirm some suspicions. The doctor believes that Caden may be reacting to environmental conditions caused by dust mites and mole spores. This might explain what Caden seems to get sick after an hour or more in the car seat. We will keep you posted on this one. In the meantime, Caden is on Zytec and Singular. I know what Zytec is all about since everyone else int he house takes it. The Singular is on my list of things to learn more about. I just know it is suppose to help with secretions.

Sherry and I did get a big gold star from Caden’s pediatrician this week. Caden was prescribed a refill for an antibiotic. This is not unusual for Caden since he seems to take a little longer than average to get over a sinus infection. Since this was a refill, it was suppose to be the same stuff and it was. The problem we saw was that the prescription called for 3 teaspoonfuls instead of the 3/4 teaspoon that we had been giving for the past ten days. We figured that just maybe the concentration was weaker so I checked that. Nope. it was 250mg/5ml just like the previous bottle. I proceeded to call the pharmacist. They said that the prescription was filled the way it was called in. They suggested we call the doctor before giving the higher dose of the medicine. It was after business hours so we just went ahead with the 3/4 teaspoon. Everything else on the label was the same. It was just a bottle about four times the size of the last one. The next day Sherry called the pediatrician before leaving to go to the cardiology appointment at MUSC. It was on about an hour later that we received a voice mail on every phone associated with our records at the pediatrician’s office. It seems a new nurse actually called the prescription in an made the mistake. They were very thankful that we were meticulous enough to question the dose of Caden’s medicine. The amount of medicine four times the normal dose could have been very harmful to him. I did not ask how harmful, and it really does not matter to me. Thank God this did not happen to a family that takes all medical advise and instructions as gospel.

The picture above is a teaser. There are more pictures coming from our latest GFI alumni event as well as from our excursion to the Boone Hall strawberry patch. Our family along with my sister and two other families from our current Growing Kid’s God’s Way (GKGW) class went out and pick strawberries together.

You can click on the picture below to see some more photos taken during our Friday afternoon family fun day. I took the afternoon off and surprised Sherry and the boys with a boat tour of the Charleston Harbor.
We then went out for ice cream.

I would love to get your feedback on how these pictures are displayed in this post verses previous posts. I am trying to find the best way to display photos in my blogs. Please leave a comment on this blog post or email me with your feedback. I also performed a major behind the scenes upgrade to this blog this weekend and would appreciate any feedback on problems you run notice.

Caden has been doing pretty good. Sherry did take him to the pediatrician this week after the massive amounts of secretions began to turn colors indicating a possible infection. The doctor did issue some antibiotics for what I believe is the eleventh time during this year’s cold and flu season. There have been some attempts to minimize the number of sinus infections, but the pediatrician has decided to refer Caden to an allergist for some assistance. The bad news is that we have one more appointment added to the list of more than a dozen reoccurring appointments already on the calendar. The good news out of this referral is that the allergist that Caden is seeing did some training under Dr. Markert at Duke. Dr. Markert is one of if not the best known doctor in the world when it comes to treating Di George patients requiring thymus transplants. Caden’s thymus was intact when he was born, but he was originally diagnosed with a mild to moderate immune difficiency. Caden’s immune system has continued to improve since birth without any invasive surgical procedures that are required with many young children diagnosed with Di George Syndrome (22q11.2).

All else is going well. Caden is learning to balance on one foot. This makes dressing him much easier. He went to go around Sherry earlier today and did a little side step. I believe that is the first time he has done this without prompting. The small things are what we learn to enjoy so much more these days.

Blessings to you and yours!

Sherry could not resist this picture. She took this picture of the boys bowing for prayer on Saturday as Pastor Phil opened our Seacoast Summerville Easter festivities(egg hunt) with prayer. It was cold and windy, but we had fun.

It has been a busy couple of weeks. Caden has been doing pretty good. He has been cutting more teeth and with that comes more secretions and more suctioning. There are some good days when the secretions are really light. For instance, on Saturday night we came in from a date at about 11:30pm. Sherry and I relieved Carol from watching the boys. I normally do not go in an check on Caden. Instead I will just listen very closely to the monitor to make sure he is not junkie (needing to be suctioned). Saturday night was one of the rare, but beautiful occasions when he was sleeping as peaceful as ever. In fact, he was so peaceful that I could not even hear him breathing. That is VERY rare and has been know to strike fear in me. The quiet was so alarming on Saturday night that I went to check to make sure he was breathing. Of course, he was breathing. I did cause him to stir, but he did not wake up. Whew!

I guess the other news that I have not shared is about our trip to the zoo a few weeks ago. The pictures did not come out as good as I wanted, but I will share a couple. The big event/excitement at the zoo was that Caden’s g-tube button came out of his belly. We have gone through three g-tube buttons in a month. This time at least the balloon deflated before it came out. The balloon got a hole in it somehow. I had to take Caden out to the van to replace the button. Fortunately we keep a spare g-tube button in the van or this incident would have caused an emergency room visit. I guess I should use past tense and say we kept a g-tube button in the van. That was our last spare.

We did have a cardiology appointment today, BUT it was a zoo in there. Really, it was. Not only were there more patients in that waiting room than I have ever seen, there were also three dogs. The dogs were those friendly, well-trained dogs, go visit the sick kids variety of dogs. Don’t ask me the breeds, I am not a pooch person. Riley has recently been very afraid of dogs and this made for a great opportunity, although I did plan it that way. I told Sherry to call Riley’s attention to the dogs so he did not get scared if they came up behind him. Then I took Caden over to meet the dogs. Caden is afraid of nothing. He went right up to pet the one that was nearly three times his size. Now, much to my surprise, Riley could not be left out. The next thing I knew I had both boys right in the middle of these three dogs. Riley stayed close, but had to do what his brother was doing. It was fun.

That is where the fun ended at MUSC today. The pediatric cardiology department was WAY over booked. We finally asked to reschedule after sitting in the waiting room for a solid 90 minutes without even seeing a nurse. Caden was getting very agitated. It would not have taken me that long under the circumstances. Caden had been wearing a plastic urine collection bag since before leaving the house over two hours earlier. I won’t even bore you with the story about why he was wearing a urine bag even though it does illustrate what our life at MUSC can be like. Anyway, the cardiology visit was not a total waste. We left with hope that the pacemaker will likely come out in the near future. The nurse did come out to help us try and determine which doctor we really needed to reschedule with. Today we were going to see the pacemaker specialist since that is what they wanted. The nurse confirmed that they wanted to talk about removing the pacemaker. We are glad of that, but we also want to know how well the aortic valve has progressed. We did reschedule and will see them again in two weeks. Other than that there is no update on Caden’s heart.

Now for the news you have all been waiting for. The results are in and you only need to click on the picture to your right to find out if Riley and Caden will be having a little brother or sister. this coming August. Enjoy!

Caden’s win ratio while playing Candyland is staggering. Well, Riley might call it aggravating. I can only remember two games when Caden was playing Candyland that he did not win. Who knows, maybe it was a Samson sort of thing. We have not played since he got his hair cut so we will see if that changes anything and report back later. As you can see he has a pretty head of hair in the picture.

The next two pictures show my attempt to correct the hippie look. I think every dad I know, at least from my dad’s generation, has tried this home haircut thing at least for a season. It saves time and dollars, so why not try it. Right? Maybe we can get fellow Seacoaster Chris Sligh to stop by so I can practice on that Phro of his.

This next picture is of Riley getting his hair cut by Daddy.

Now last but not least for sure is this curious picture of Riley intently watching something in the oven. What could he and Mommy have been cooking up here? Drop by Riley’s Page for a look at Riley and Mommy’s latest kitchen fun.

We had a very eventful trip to the Columbia Zoo this past weekend. Pictures and exciting details to follow very soon. Don’t forget to check out the previous post titled “Some Many Goobers”. A picture has been added to that post to help illustrate the story.

All of you GFI Charleston Alumni will want to mark your calendars for the Spring Picnic coming up in April!!!

I know that is a gross word, but “goobers” best describes this month for Caden. Caden has been cutting molars this past week which definitely increases the goobers. Yes that was plural, he has been cutting multiple molars this week. He started pretty much on Sherry’s birthday with the teeth cutting thing. She was quick to remind me that he did the same thing last year. It was a little too hard for me to remember Caden cutting teeth last year since that was the week Caden’s heart stopped beating during a heart cath and the doctors had to give him chest compressions. Anyway, he is doing pretty good right now other than the goobers. He has seen way more than his share of suctioning this week as a result.

This is how he falls to sleep most afternoons. You can click this picture for a closer look.
There is really not many choices as to whether to leave him like this or not. If you suction him, then he will wake up due to the suctioning. Once it gets backed up enough to start interrupting his breathing, then he will cough, gag, cry, and sometimes retch letting us know he is awake and in need of a pass with the Goober Grabber.

Caden has also been learning some new skills. His physical therapist has been working on jumping with Caden. He loves it. He also is getting very good at walking up and down the stairs. He holds on to the banister pegs as he moves up and down the stairs. Its not the fastest trip up or down the stairs for me while playing his safety net, but it is quite rewarding to watch him do this on his own.
Prayer Request

Sherry and I have a moments where we could use some intercessors to move in on our behalf. I say this because the devil does play on the emotions that come with the exhaustion of dealing with the day-to-day happenings around here. We can and do pray for ourselves regularly, but there is power in praying for others. Please remembers us especially as we come closer to Caden’s next cardiologist visit. That appointment will be on Monday, April 9th. We do not expect trouble and we want to keep it that way. Join us in prayer as we ask for a great report and positive interaction with the doctors. If you will remember, we have not seen these folks since they turned off the pacemaker back in October. There is a video in that post that is very uplifting. It shows Caden as he was just beginning to walk just a couple of weeks before his second birthday.

Thank you for keeping tabs on us. Blessings!!!

Happy Birthday Sherry
I LOVE YOU!!!

Yes…it is Sherry’s birthday. Please drop her a comment and wish her the happiest of days today. I would tell you how old she is, but I might get into big trouble. Besides, like her, I am rolling over a number with a zero on the end later this year and do not want to dish out more than I am willing to take. I will give a hint. A peanut farmer from Georgia was President when Sherry was born. Did I give too much of a hint there? 😉

Caden and I had some quality Daddy/Caden time shopping for Mommy’s birthday on Saturday, but the day did come with some rough spots for Caden. Caden’s rough spots had to do with two mishaps that he handled very well, much better than me anyway. The first thing happened just before we left the house on Saturday morning. He was sitting in his crib waiting on me to get a washrag to clean his face. I had left the little flap side of the crib down and he started playing with it. Lifting it and then letting it bang against the side. It obviously came down pretty hard on his hand because it knocked his little pinkie finger knuckle out of joint. That’s the knuckle on the little finger that looks bent at 90 degrees all the time on his left hand. You can see what I mean about his finger if you watch the aquarium video again and pay attention to his left hand on the glass of the angel fish tank. He did cry, but he also did a great job of letting me know where he was hurt so I was able to put his little finger back in joint for him. I know a little about dislocated joints since I have dislocated my right knee four times since 11th grade in high school. And when that happened to my knee, it required someone else to put it back in joint for me. The last time that happened was over 15 years ago. Wow, that was a long time ago. Anyway, Caden stopped crying as soon as his little finger was back in place and I got the biggest hug ever from him. I went ahead and gave him some OTC pain medicine and kept a watch on his finger for the rest of the day. You would have never known anything happened. He was happy as a pig in the mud for the rest of the morning and afternoon. Later in the evening Sherry had just given him some water in his g-tube when a minute or two later he got up to go get a toy. He must have snagged his little g-tube button on something because it was just lying on the flow between him and Sherry. He was not making any big deal out of it even though it did bleed just a little. He didn’t even fuss until I laid him down to replace the g-tube button with a new one. We have to grease up the button with KY and just push it in the hole in his tummy. We then put water in a little port on the side that fills the bubble to keep the thing from coming back out, most of the time anyway. It is not a fun process for me or him, but it has to be done in a timely manner to prevent a surgical procedure to make a new hole in his tummy. This is only the second time his g-tube has come out by accident in over two years. Other than that Caden is doing great. He is still on an antibiotic and a decongestant, but that has been going on for a while.

That is the big news of our week, well except for one thing. Sherry did get an ultrasound at this week’s OB visit. They were having a hard time hearing the baby’s hear beat using the little portable audio machine so they got an ultrasound machine to take a quick look. The doctor said that things looked as good as they could for a 15 week pregnancy visit. It is a little too early for them to see clearly enough to guess the gender with any degree of certainty. The doctor did give us his best guess of the gender, but that is our little secret. Stay tuned because the big ultrasound is coming in a few weeks. Riley is pretty confident that he is getting a baby sister, but he has not even entered pre-med at the young age of 4 and has no scientific basis for his guess. By the way, that is not a hint as to what the doctor’s guess was.

I want to close by saying that I feel blessed beyond imagination to have such a wonderful and Godly wife. She is beautiful, loving, caring, smart, and funny. And did I mention that she is my best friend in the whole wide world? She is the greatest wife and the most awesome mommy to our boys. Please join me in thanking God for Sherry on her special day. Please continue to keep her in your prayers in the days, weeks, and months to come. Pray that she will experience comfort and joy throughout the remainder of this pregnancy. She has had a hard time getting uninterrupted sleep in recent nights, but hopefully the body pillow Riley and Caden got her for her birthday will help out in that area.

Many blessings to you and yours!!!

Caden is scheduled to get his next Synagis shot tomorrow, but I am not sure it will happen. He has been having a fever on and off throughout our trip to Georgia this weekend and he has also been very congested. He has been so congested at times that he has actually gagged himself into a full blown retch. Retching is where you go through the motions of vomiting but nothing comes up. Caden does this from time to time during his feedings, but I can not remember the last time he retched when not associated with eating.

Sherry and I slept in the same room with Caden for the first time in a long time this weekend. We have taken turns manning the monitor in the past few months when Caden was sick, but sleeping in the same room with him for four nights in a row is a whole different ballgame. It put us both into a sense of awareness that does not allow for sound sleeping. I can not even begin to explain the noises this boy makes in the middle of the night. It is almost like the sounds you hear when underwater in a swimming pool, but much crisper crackling and popping sounds.

Anyway, I am not sure if the pediatrician will give the Synagis shot with all this congestion and random fever. Otherwise Caden is doing great. He and his brother loved the four day trip to Atlanta with a brief stop in Clinton, SC to visit Nana, Aunt Becke, and Kurt.

Praise Report and Fun Stuff

Praise God!!! All went well with Darla’s surgery and the results of the tests run on the spot showed no signs of cancer. The surgery went off with a much less invasive incision compared to the explanations of the worse case scenario. We went down to Atlanta last Wednesday night so that Sherry could be at the hospital with her dad while Darla was in surgery on Thursday.

Sherry and I along with the boys were in the van headed back up to the hospital on Friday to visit Darla when Joe called to say that the doctor had just left Darla’s room and had told them that she could go home. That was just barely 24 hours after the surgery was completed. With the news that Darla was headed home, Sherry and I decided to convert our hospital visit into a trip to the Georgia Aquarium so that Grandma could get settled in at home without the noise of our two little bundles of energy running around the house. We have been looking for an opportunity to visit the Georgia Aquarium since it opened. We have found ourselves making excuses about how hard it is to do stuff with Caden and all his medical gear (i.e., feeding pump and suction machine), but we finally just bit the bullet. We proved that these kind of things are not that hard after all.

The GA Aquarium was a great stop for our family and a much needed R&R stop. Caden and Riley both had a blast. I have added a few pictures and a video below to help give you and idea of what it was like for us. Our little miracle boy Caden showed a particular interest in the angelfish after seeing some much larger and more colorful fish in other exhibits. Go figure. We moved on to the next exhibit, but he was not interested. He wanted to go back to the angelfish and headed in that direction every time is feet hit the floor.

You can click on any of the pictures below to see a larger copy. The video at the bottom is just over 3 minutes long.

Riley, Daddy, and Caden at the GA Aquarium

Riley and Daddy are kneeling at the bottom of the tank

Riley and Daddy with the African penguins

Riley and his turtle friend at the GA Aquarium

[youtube]http://www.youtube.com/watch?v=nyXrETC4EeI[/youtube]

If you can’t view the video with YouTube then you can view a copy with Window’s Media Player.

We are all doing pretty good here in the Osborne camp. Caden’s newest word is “uh-oh”! Sherry says it works really well for Caden to say since it is all vowel sounds. Caden is on his umptenth round of antibiotics this week due to fever and excessive congestion. His fever jumped up above 103 early last week. We had an ISFP meeting today with all four of Caden’s in-home therapists. Caden continues to amaze them all. I think we counted up nearly 50 signs that Caden is using now. Most of the signs I can understand, but I always have Riley around to keep me straight on my sign language skills.

Answered Prayer

We finally got the results of the blood work that was performed back in January. The results show that Caden’s immune system continues to improve and he has been cleared for all of his live vaccinations. (MMR, chicken pox, etc)

The Synagis shots have been approved by our new insurance provider. My new health care insurance not only approved the Synagis, but they approved them monthly for the remainder of the year. This is way above and beyond what we could have ask for or imagined. We were hoping and praying that we could just get approved for monthly Synagis shots through April.

Prayer Requests

First and foremost we are asking that you pray for Sherry’s Mom. Darla is scheduled for a very invasive surgical procedure this coming Thursday morning March 1, 2007. The surgery will be performed to remove a spot on her lung. The doctors tried to access this spot a few weeks ago using a scope that was run down through her airway. Due to the location of the spot, the doctors were not able to get a sample of the tissue for testing during that last procedure. The doctors have exhausted options for gaining access and testing this spot via other means. The surgeons plan to try and access the spot via a thoracotomy. A thoracotomy a surgical procedure used to access the chest cavity from the patient’s back using an incision just below the shoulder blade. This spot was found right between Darla’s lung and her heart. The thoracotomy is considered much safer than having to access the chest cavity via the sternum. The plan is for the surgeons to try a thoracotomy on each side of Darla’s back first, but they will proceed with an incision from the front side of her chest cavity if necessary to remove the spot. Please keep Darla Pack in your prayers as she goes into surgery at Saint Joseph’s hospital in Atlanta on Thursday morning at approximately 9:00am.

Please keep little Romona Rae and her family in your prayers. Romona was diagnosed with 22q11.2 (the same primary diagnosis as Caden) just a couple of days ago. We were first told of Romona by a mutual friend. Romona’s life is one huge miracle that continues to unfold. Her parents are nervous and Getting Geared Up to bring Romona home from the hospital tomorrow.

Last but certainly not least, I want to ask you to pray for two U.S. Air Force officers in Afghanistan. One of the officers is Lt. Col. Gary Brown who is the husband of Stacey Brown. Stacey keeps close tabs on our family and has supported us in a number of ways since Caden’s birth even when she was caring for her newborn twins. Stacey is a friend and former co-worker of mine. Stacey sent Sherry and I an email this week alerting us of Gary’s case and asked us to pray for a positive outcome from the Article 32 hearings that are going on this week in Kabul, Afghanistan. Her husband and one other Lt. Col. have been charged with assault and conduct unbecoming an officer. You can read the details of this story on The Land of Ozz.

Thank you for your love and support for our family and friends.

Oh yeah, vote for Chris Sligh on American Idol!

Caden turned 27 months old this week and has been doing pretty good. He is now on his 8th or 9th round of antibiotics since September for excessive congestion and an ear infection. Other than that, he has been dazzling the therapists as usual. Caden is walking more than he crawls these days. Friday before last Caden went to his speech therapist at MUSC. She observed Caden’s new skill of mimicking multi-syllable words. He is getting the tempo and number of syllables correct even though his annunciation sounds nothing like the words he is repeating. The big deal here is that he is trying to mimic our words. This has his speech therapist considering whether the time might be coming when she will recommend the Z-plasty that I wrote about a year ago. I wrote about the Z-plasty on February 14th of last year. Valentine’s Day 2006 easily ranks in the top five worse days of my life now that I look back at it.

We will see where this Z-plasty thing leads us with cardiology at MUSC. The Craniofacial surgeon will likely go to the pediatric cardiology team for a green light to sedate Caden. The cardiology department has not seen Caden since they turned off the pacemaker back in October.

Now for the big brother news. Sherry went to her new OB this past week. She is 12 weeks along in the pregnancy now and all is going great for her and the baby. She has been getting tired a little sooner in the evenings and having a hard time finding warm maternity clothes, but other than that she has been fine. Her first two pregnancies were mainly during the warm months of the year and all her clothes are short sleeve. Since winter finally decided to show up in SC, she is looking for long sleeves. We got to hear the baby’s heart beat and we got the all famous peanut pictures from the ultrasound machine. We have an official due date of August 25th, I think. Those dates don’t mean a whole bunch anyway since we will be looking at a planned c-section on or about August 15th. They don’t want Sherry to experience any contractions since the doctor created a weak “T” incision during Riley’s delivery. Caden has pointed to Sherry’s belly when talking about the baby this week, so he is obviously tuned into the fact that he will not be the baby of the family for much longer.

My new job is going great. I will begin my third week on the new job tomorrow. We made it through our three day period without insurance this weekend without incident and without having to pay the cobra premiums.

Special Prayer Request
I have posted a note on my main blog. Aunt Robin has asked me to post this prayer request for a close family friend of hers whose child was born extremely premature about a month ago. This family needs all the prayer and help they can get right now.

Thanks for keeping an eye on Caden’s Page. May God bless you and yours.