Caden’s Page

This is a test of the email update system. This message
was sent from my email client and will allow for
Sherry to post to the Blog without having to learn
HTML. Click on comments below to let me know what you
think.

Please look at previous postings below and on the
archive link on the left side of this page.

Hank O

Caden has been doing great lately.  He is scheduled to
visit a new pediatrician on Thursday.  We have not
been very comfortable with Caden's current
pediatrician and the staff at their office.  We have
been working for weeks trying to get a note to the
insurance company for in-home nighttime nursing
assistance for when I travel.  Sherry is not able to
handle it on her own...for too many nights.  She
actually ended up without a nurse last night.  Sherry
did make it through the night, but she was wiped out
by this evening.  She was supposed to get a new nurse
last night because the one that came the two days
before did not work out.  To get back on track here,
we are trying to get the pediatrician's office to get
the required information to the insurance company so
that insurance will start picking up the tab.  Right
now we are paying out of pocket.  That hurts, real
bad.  We hope to have all this insurance stuff worked
out by the end of this week.  I go to Colorado  for
the entire week next week.  I have been in Utah for
several days this week.

We recently received a package from CHOP (Children's
Hospital of Philadelphia) that provided us with a ton
of information on the 22q11.2 deletion diagnosis.  We
are planning to visit CHOP in the near future to have
Caden seen by the 22q clinic up there.  CHOP has done
more research and treated more people with the 22q11.2
diagnosis than any other hospital or clinic in the
world as far as I know.  We are very impressed with
the accuracy of data that we have seen from them as it
relates to what we have seen with Caden so far.

Caden is also scheduled for another modified barium
swallow (MBS) on Friday of this week.  We expect Caden
to show remarkable signs of improvement during this
test.  This test basically tests Caden's ability to
swallow.

I will keep you posted in the next few days to let you
know how things went with the MBS and the visit with
the new pediatrician.

Have a great day.  God bless you.

Hank O   

This is a new feature to Caden’s page to allow for more ways of posting information. This new blog page will allow Sherry or I to add informaiton via email, telephone, or via a web page control panel. I hope you enjoy this new feature. I am trying to make it easier for Sherry to post information when I travel. Please leave a comment and tell us what you think.

Hank O

Caden continues to do well. He continues to gain weight. He weighed 7 lbs 14 oz on Friday when the home nurse came by to see him. That is up another 7 onces in just over a week. Caden does continue to have severe reflux episodes that we have talked to his pediatrician about. The pediatrician does not think the reflux is due to what Caden is being fed, but rather how much and how fast. We have eased off of the daytime rate and volume that Caden is getting and it seems to be helping a little. The pediatrician also adjusted Caden’s stomach medicines last week to see if that will help things too. Caden was still on the same dose that was being given when he was 6 lbs. Now that he is almost 30% heavier the pediatrician felt that he needed to have an adjustment. We are comfortable with the pediatrician’s approach. We have stabilized Caden’s food at a 50/50 ratio of Mom’s milk to formula. We don’t plan on changing the mixture again until we get the rate and volume where it needs to be for his weight and age.

Riley and I took our first trip out of town since October this weekend. We went to see Papa on Sunday. Papa is Riley and Caden’s Great grandfather. Papa is in a nursing home in Clinton, SC about 160 miles away. We had not seen him since before Caden was born. For those who do not know, Papa’s doctors called the family in just a few weeks before Caden was born. They thought he would not make it through that weekend back in October. Riley and I visited with him, my mom, my sister and my nephew for the afternoon yesterday. The visit was long over due. We miss Papa a bunch. Papa was not having the best weekend, but he was still doing good enough to get out of his room in a rolling chair for a while yesterday.

Sherry stayed home with Caden. Caden seems to be more prone to have reflux when in motion. We tried taking Caden to church Saturday night to see if he might be up for the Sunday trip to see Papa. Caden had a pretty nasty reflux spell while at church and that raised enough concern for Sherry and I to agree that he needed to stay home. We hope he is able to travel soon because we want him to met Papa.

I found a chat group on Yahoo this weekend that is just for families affected by DiGeorge Syndrome. I have joined the group and already found that we are not alone in our struggles with Caden’s condition related to DiGeorge. We have several friends with children that have special situations with a child, but none with the extreme feeding problems. I am hoping to possibly get some tips from other parents as well as share some if we can.

Well, it is time to get ready for work. I just changed Caden and he is back to sleeping sound already. I have never held a child that enjoyed being held as much as Caden. It is hard to put him down sometimes. Thanks for checking on us. May God Bless You All.

Caden continues to do well at home. He is gaining weight. YEAH!!! He last weighed in at 7lbs 7ozs on 1-12-05. That was a 6oz gain in one week. Caden is now getting mostly Mom’s milk. We initially started him on Mom’s milk at 100% strength back on 1-8-04. Caden was really fussy the next day and continued to be fussy until we went back to a formula. We talked to Caden’s pediatrician. She told us that we should have eased him off of the formula instead of going cold turkey. I guess we got too excited about freeing up freezer space. We have since worked Caden up to about 75% Mom’s milk and 25% formula. We should get him up to 100% Mom’s milk by the end of this coming weekend. Well, it will be fortified with a teaspoon of powdered formula per 3oz of Mom’s milk. He seems to be tolerating the slow transition just fine.

We have continued to “try” to move towards normal everyday life. I am now getting up and going to work like a normal human. Sherry is trying her best to get through the days alone with these guys. Riley is wonderful on most days and other days he shows stereotypical 27 month old colors. These are the days when Sherry is greatly relieved to see me come through the door. Caden is still fairly high maintenance. Caden is still not swallowing anything as far as we can tell. This means that he gets gagged on his own secretions after a while if he is not suctioned out. This does not sound like too big of a deal, but you just don’t realize how much you swallow without thinking about the process. Anyway, this makes for a pretty busy day of just making sure Caden’s airway is kept clear of liquids from secretions and reflux. Even though he does not swallow, he does still reflux or spit up as most folks call it. The short of the story is that Sherry is having a tough time on some days. It is hard to explain the complexity of it. I stayed home on Saturday with Caden while Sherry, Grandma, and Grandpa went to the park with Riley to play in the snow. Yes…We had snow in Charleston, SC this past weekend. Well, it was man-made for an annual winter festival that is put on for kids to experience snow in a town that almost never sees enough snow in a year to make a snowball out of. This was not Riley’s first experience with snow since he a Sherry went to Colorado with me last April. Anyway, my experience alone with Caden all day gave me appreciation for how much different Caden’s needs are compared to Riley’s at that same age a little over two years ago.

We continue to pray for Caden to get the ability to swallow just a little bit. This small task will bring so much peace to our home. Caden will be able to rest without becoming uncomfortable due to the gagging and the suction required to clear him up. No one should have to endure what he has to go through. I wish I knew what to do for him. There is very little research on dysphasia in infants. Most kids grow out of the problem before data can be gathered on their condition and how to treat it. I hope and pray that the same holds true for Caden. Please join us in praying for Caden to get is complete swallow reflexes. Your prayers are answered. I have shared only a few of the stories of answered prayers and miracles that we have witnessed first hand in recent months.

I hope you don’t take the previous paragraph to be too gloomy. Caden is doing better today than he has even done. There are a lot of times when you would not have a clue that this little boy had been through open heart surgery or had any of these digestive problems. He has a way of captivating your attention and making you forget about anything but the joy that he spreads through his smile and gestures. He is a wonderful little boy. A pastor at church asked me on Sunday where I got this little boy and where he could get one. I told him that God gave me Caden and all he had to do was pray and ask God to give him one. 😉

I will try to get an update out a little more often. I have been asked to continue the updates and pictures. I have posted a few pictures. I hope you enjoy them.

Caden is doing good at home. Caden is having fun at home as you can see from the picture above. Riley finally got to hold Caden today for the first time since we brought Caden home. Riley had been sick and was not able to get near Caden for almost a week. I posted a few pictures on the week 10 section with and Caden together.

We all went out on Saturday evening to church. We all enjoyed getting out of the house and it gave us a chance to see that we can actually get back to some normal activities of our day to day life.