Five Below Fundriaser

I have set up a fundraiser at our local Five Below.  All of the proceeds will be donated towards our team (Ryder's Stripes) for the IDF Walk in Philly on September 29.  Please feel free to pass it out.  The more people we can get it to the better.  The fundraiser will be held from Sunday August 18- Wednesday August 21.  The really great thing is that August 18 is the last day of tax free shopping in MD.  So help out our team and save a little with tax free shopping at the same time.  You need to bring the flyer with out.

Medical Stuff

This is not going to be a fun post or have any pictures.  I wanted to update everyone on various medical things going on in our house recently.

Medical Insurance:  I will start out by saying I am thankful we have Medicaid because it has helped tremendously with finances.  However, it has been a bit of a struggle to get certain things figured out with this insurance compared to our old one.  We are looking for a second opinion from another Immunologist, but we can only see doctors in MD which has really limited our options.  Luckily, I did find out that Children's in DC does take our insurance so we have an appointment for October.  When we changed insurance companies we had to find a new pediatrician which was no fun.  I loved our old one.  I finally recently found one I liked, but yesterday I got a letter in the mail saying as of September 28 they will no longer accept our insurance.  Ugh!  I spent the last 2 days researching doctors and making calls.  So many of them are not accepting new patients, but I did find one I hope will work out.  They are connected with Hopkins so all of Ryder's medical stuff is already in their system.  The boys will go for their 6 year appointment the beginning of August.  Now I am busy getting records transferred and things changed through insurance.  Such a pain!  And then I got a letter in the mail today saying Kennedy Krieger could not get authorization for Ryder's upcoming Psychiatry appointment.  I called and they explained he can only have 1 mental health provider.  Since he sees a behavior therapist at school that is considered a mental health professional.  They tried to tell me I would have to close that claim in order to see the psychiatrist.  After getting insurance on the phone at the same time we got special permission for 1 initial evaluation and then medicine maintenance if needed.  I am really hoping it all works out in the end.

Tyler:  He has been pretty healthy for his 14 months of life.  He did have RSV over the winter and an ear infection at his birthday, but nothing too bad.  About a month ago he started having really bad diarrhea and wasn't eating much at all.  After about 4 days I took him to the doctor just to see if anything was going on.  They sent us to get a bunch of stool samples.  That is how we found out he had C Diff which is an infection in the intestines.  The pediatrician explained originally she was not going to test for this because it is uncommon to find in a young child with no risk factors (long term antibiotic use, hospitalization, or immune system issues), but last minute she added it in because his symptoms just sounded so much like it.  I am glad she did decide to test for it because letting C Diff go untreated can cause long term issues.  He was on Flagyl for 7 days, but that did not clear up the infection.  So he is now on his second round of Flagyl and they added Vanco which is a very strong antibiotic.  I am hoping this will get rid of it.  In the meantime, I have been doing my best to keep his dirty diapers away from everyone else and trying to disinfect as much as possible.  It can be extremely contagious and could be very bad for Ryder to get.  He has his 15 month appointment with the pediatrician on Tuesday next week so we will also discuss how he is doing with the medicine and symptoms.

Ryder:  I have been talking to lots of other parents whose children do the same infusions as Ryder.  I have learned there are so many options out there for needles, tubing, pumps, rate, and so much more.  The doctors never tell you all of this so I thought the side effects Ryder is having were just par for the course.  The fact is, there are things you can try to lessen them.  Some people will always have side effects no matter what, but we won't know unless we try a few different things.  I called the specialty pharmacy asking for options and was told we could get different tubing to slow the rate, but they would have to ask the immunologist first.  They also told me there was no different needle which stinks.  The one he uses now as the actual needle stay in, but there are sets that have the needle come out and just a plastic catheter stay in.  However, our pharmacy and insurance combo don't carry those.  I heard back and the Immunologist told them to send us 2 slower sets of tubing to see if they help at all.  If they do then we will switch completely.  Tomorrow Ryder has his appointment at Hopkins with Pulmonology.  He has been having chronic issues with his lungs so I have no idea what we will find out.

The rest of us have been doing good.  No major medical stuff to talk about.

Infusion Time

Periodically I like to post pictures from Ryder's weekly infusions just so people can see.  He still doesn't enjoy the infusions, but at least he no longer runs and hides when it is time.

 

IDF Conference

As I posted earlier, Ryder and I were able to attend the IDF National Conference in Baltimore the last weekend in June.  I wanted to post some pictures from that weekend to show how much fun we had....

Ryder showing off his name tag at registration

Ryder showing off the great view of Camden Yards that we had from the hotel

Ryder posing with Igi and the Antibody

 

Ryder's hand prints are on there

shows all of the other zebras who attended

Ryder with two of his friends

 

Ryder with his new girlfriend Katie

 

Me with a few of my friends from the conference

I joined a wonderful support group on FB for parents with zebras

 and finally got to meet some of them in person

 

Ryder at the aquarium

One night the aquarium stayed open late just for IDF

 

 Ryder watching the Orioles vs Yankees game

A picture of a few from our FB group

It was an amazing experience for Ryder to meet other kids who have similar health issues and have to do the same infusions as him.  He went to Kids Club during the day and had a blast.  They had short educational sessions to teach them about their immune system and how theirs doesn't work right.  They also had a carnival, field trip to the Science Center, and a magic show.  While Ryder was having fun with his new friends I had the chance to talk to other parents, listen to the experts in the field of CVID, and learn so many things.

Attending this conference did give me a little push to speak up for Ryder a bit more.  I discovered that many other patients have far less infections than Ryder does.  I talked to one of the leading experts in CVID and they said you should only have 2-3 infections a year which is far less than what Ryder has.  Even after asking the Immunologist at our last appointment if we should increase Ryder's infusion dosage they told me that it was fine since his IgG numbers were good.  I now realize that the most recent way of treating CVID patients is to treat the person/symptoms and not the numbers.  Because of this realization I have started to look around at other possible Immunologists so we have an appointment with a doctor at Children's National in DC, but not until October.  I really took to heart one piece of advice that was given to me which was to remember we are employing the doctors so we have the right to look around and "interview" them until we find the right fit for our family.  It was also pointed out to me that being with an expert in the field is amazing for the diagnosis phase, but sometimes they are not the best for day to day living and long-term maintenance. With that being said, I do like our Immunologist and feel they know a lot about CVID.  I just have a personality conflict with the NP who pretty much is the only person we are supposed to communicate with.  I will keep everyone updated on how our search for a new Immunologist goes.

4th of July

This year for the 4th of July we decided to not go into Annapolis like we always do.  It was causing me some anxiety knowing it was going to be my first 4th of July not being in Annapolis with family, but it ended up being a lot of fun.  We had a cook-out for lunch with our neighbors and good friends Erin, Rod, EJ, Mya, and Derek.  The kids all had a water balloon fight with Ben and had fun playing in the little pool and on the slip & slide.  After the cook-out we had a quick nap and then went to Bel Air for a parade.  The parade was so long (2 hours), but was really good and the kids had a blast.  After the parade we went to watch fireworks also in Bel Air, but at a different location.  We set up with blankets and chairs in a big field at a local high school.  The kids all had fun running around playing with a bunch of other kids.  We did some sparklers and then were ready for the fireworks which ended up being really good as well.

IDF

Ryder and I had an amazing weekend in Baltimore while attending the IDF National Conference last weekend.  I was able to learn so much information about CVID and so much more.  It was amazing to get the opportunity to hear from the experts as well as have the chance to ask questions.  At the gala on Friday night I had a once in a lifetime experience.  IDF presented an award to Carol Ann Demaret who is David Vetter's mother.  Many of you probably have no idea who that is, but if I tell you she is the mother of the infamous "bubble boy" then it would become a familiar name.  Her son had a severe Immunodeficiency called SCID.  She has been a big part of IDF and a role model for many parents with children who have CVID such as Ryder.  She was all alone during her journey with her son David.  I am so lucky to have found an amazing support group of other parents who have children going through similar experiences as Ryder.  At this gala I was sitting at a table with a few of these parents I talk to online and Carol Ann walked past our table.  We asked her if she would take a picture with us and she was honored to.  She told us she was grateful we had such a support group and that we could use her story to help explain to people what our children are struggling with.  Although Ryder's diagnosis is no as severe as David's many people understand once I somewhat compare to the "bubble boy" story.

At the conference I learned about a fundraiser that IDF will be holding in September.  They are going to be doing their very first IDF Walk in Philadelphia on September 29.  We have signed up a team called Ryder's Stripes.  We would appreciate it if anybody could join and walk with us.  If you are not able to walk with us it would be amazing if you could donate to our team to help raise money for IDF.  You can join our team or donate at our personalized walk page.... Ryder's Stripes