Caden's Page

We took Caden to a new pediatrician on Thursday 2-17-05. This was one of the best moves that we have made in the six weeks that Caden has been home. The new pediatrician got more done in one afternoon than the previous pediatrician did in the entire past six weeks. He made several referrals that we did not even know we needed. He listened to the feedback that we recently got from the Children's Hospital of Philadelphia (CHOP). He admitted that he can not possibly know how to deal with every detail that Caden needs addressed, but promised to help us identify, manage and coordinate with specialists who can assist us. He and the other members of the practice there are all Christians.We really like the idea of having a Christian doctor. He quoted a scripture that summed up his belief about how we should view the doctors that we come in contact with and how God can use them. "The king's heart is in the hand of the LORD, as the rivers of water: he turneth it whithersoever he will." Proverbs 21:1 (KJV)

We did contact CHOP recently about seeing Caden. They will see him. It just takes time to get a copy of his records sent up and evaluated to see what clinics he needs to visit while there. It will likely take several months to get the appointments arranged within a few days of each other to make our trip more productive. We will then likely visit them once or twice per year. In the meantime CHOP will work with Caden's local doctors to offer advice based on research CHOP has done on over 600 patients that have been diagnosis with DiGeorge.

I know that everyone has been anxiously awaiting the results of the modified barium swallow (MBS). Well Caden showed about the same results as he did the last time he had a MBS done back in December. We believe that he is swallowing some, but the test did not reflect that. The doctors performing the MBS on Friday are the same ones that have tested Caden on all three occasions. They plan to consult with CHOP to make sure they are testing Caden in a way that is likely to show the best results before testing him again. They seem to believe us when we say that he is swallowing some. They just don't seem to think they are testing him in a way that will prove it. They did not want to schedule a new appointment for the next MBS until they contact CHOP. If something significant comes out of this communication then they will want to test Caden again immediately. Otherwise, they will probably set Caden up for another MBS at 5 months of age (beginning of April).

I did travel last week to Utah and I am traveling again this week to Colorado. Sherry did great last week even though she did not have assistance on one of the nights I was gone. We are working on getting the insurance to pay for the in home care. I have been trying to get Caden's previous pediatrician to send in a letter to the insurance for two weeks now. I believe her staff was letting her down. The new pediatrician took about two hours to get the letter into the insurance company after Caden's visit on Thursday. I talked to the insurance company later in the day on Thursday and they had receive the letter. We expect an answer later today (Monday) from the insurance on what level of care they are going to provide. In the meantime, we have to shell out just under $100 per night to get a certified nurses assistant (CNA) for just a few hours. This at least gives Sherry the peace to be able to sleep for a few hours uninterrupted when I am not here to do my normal shift. While the CNA can suction Caden they can not give medicine and can not touch Caden's feeding tube. The suctioning is the most critical issue in the middle of the night anyway and they can always wake Sherry if needed. The is no rhyme or reason to when Caden refluxes. Saturday night he did not reflux at all. This morning , I have stopped writing this message twice to suction him due to fairly severe reflux spells that caused him not to be able to breath until I cleaned his airway with the suction. The pediatrician expects the insurance to provide an LPN or RN to be able to administer medicine as well as stop and start food as needed to give the medicine.

I have saved the best news for last. Caden was weighed again this week and is now up to 9 pounds 8 ounces. He is really doing great in this area. He continues to grow and become more active. He is smiling a bunch more this week. He is cooing and making those cute little sounds more every day. He is rolling from his back to his side and from his side to his back. We are so excited about his progress and hope that you are too. Caden still has some hurdles to overcome with his reflux and swallowing, but there does continue to be signs of improvement in his overall condition on a regular basis.

Thanks again for visiting Caden's page. We do still need the support and appreciate every little thing that is done for us. Sherry is managing appointments with over a dozen different medical professionals including doctors, therapists, nursing agencies, equipment providers, pharmacies, and government support agencies. The sad thing is that Caden has not even seen some of them for the first time yet. Sherry continues to need help with Riley when she has to take Caden to an appointment. Several of our friends have been so awesome at helping in this area. We do appreciate every little bit of help. We still have friends bring dinner once in a while too. That especially helps Sherry when I am on the road. This entire situation is more difficult to deal with at times than anything I have ever done. It amazes me how well Sherry handles it all day without assistance. Your prayers and help have and continue to be greatly appreciated. Sherry and I become extremely exhausted at times. Riley is doing great, but does show signs of the situation wearing on him too. Please keep us in your prayers. God bless you and your family.

Hank O

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

In Loving Memory of our Papa.

Haskell R. Williamson Clinton, SC Haskell (Hack) R. Williamson, 84, husband of the late Frances Louise Williamson of 105 Jefferson Street, died Sat. Feb. 5, 2005 at National Healthcare of Clinton with his daughter and grandchildren at his side. He was the son of the late Ruben and Margie Williamson. He was retired from Whitten Center and a WWII veteran. He was assigned to the 82nd Airborne Division, 320th Glider Field Artillery Battalion. He was a Purple Heart recipient. He participated in the Allied Forces D-Day invasion of German occupied territory on the coast of Normandy. He was a member of Calvary Baptist Church of Clinton, and was among those who built the present church. Surviving are his daughter Priscilla Hayes of the home, his grandchildren, and great grandchildren Hank and Sherry Osborne and their two sons Riley and Caden of Goose Creek, SC and Becky Osborne and her son Kurt Osborne of Clinton. Also surviving are his two sisters Dollie Lusk of Clinton, Mattie Kyzer of Newberry, and many nieces and nephews. He was predeceased by two brothers Charles Williamson and Oliver Williamson, and a sister Millie Strickland.

This week has been filled with emotions as you might imagine. Caden was weighed at 9 pounds 3 ounces on Friday. That was a gain of 18 ounces in just seven days. Later in the weekend Caden took his first road trip to attend his great grandfather's funeral. Caden and Papa were not able to meet before Papa passed, but Papa was kept up to date on Caden's progress since Caden's birth.

I was able to be with my mother and sister at my grandfather's side this past Saturday evening when Papa went on to be with the Lord. I returned home briefly on Monday to assist Sherry with traveling to Clinton with Riley and Caden.

We are back home from Clinton. Caden has experienced frequent spells of severe reflux since Saturday in the early morning. We have not discovered the root cause of these reflux spells. Caden is looking good otherwise and continues to react more to us every day with smiles and those wonderful little baby sounds. I am sure there are many more things to report, but I am tired and I am at a lose for words.

My family and I rejoice in Papa's happiness today as he is walking those streets paved with gold. We thank you for your prayers and support. God bless you.

Hank O