First Day of 1st Grade

Today Zak & Ryder had their first day of 1st grade.  They are growing up so fast.  Ryder was very nervous about going to school, but he had a great day.  Both boys told me about their friends and seemed pretty excited about their classes and teachers.  Ryder is worried again tonight that he won't remember what bus to get on, but I keep telling him nobody will let him get on the wrong bus.  It is hard to see him suffering so much from this anxiety.  This afternoon Ryder had a pretty big meltdown because he was tired and just so stressed from holding it together during school.  Zak had soccer this evening so he got to bed a little late.  I am sure things will go smoothly once we get back into a normal routine.  Here are pictures from before school...

Tyler wanted to be in the picture too

 Ryder

Zak

Tyler had no clue what to do with himself after his big brothers went to school.  He was a very happy camper once EJ and Mya got to the house though.  I am so glad Tyler has Mya to play with during the day and almost experience having a twin himself since they are so close in age.  Today we found out that EJ got into pre-k at the boys' school.  This will be an awesome experience for him!  This means our routine will include putting the older 2 on the bus in the morning, feeding the 3 younger kids lunch, putting the babies down for a nap, putting EJ on the bus around 12:30pm, and then I will have a little time to get my college work done.  Around 4pm my older boys and EJ will get off the bus and the babies should be up as well.  I wanted to include a picture of the baby boy also....

Here is my super baby!

Tiny Superheroes

I found out about this organization called TinySuperheroes from some other moms of children with CVID.  They hand make capes for children who are dealing with illnesses.  This allows the children to feel like a true superhero for going through everything they have to deal with.  When Ryder got his in the mail he was so excited!  He wants to wear it all of the time and loved wearing it during his recent infusion.  They are able to do this for all of the children through generous donations.  Please check out their website and donate if you are able to.  Please help me spread the word about this amazing group by liking their Facebook page and asking others to donate if possible.

TinySuperheroes Website

TinySuperheroes Facebook Page

Here are some pictures of Ryder and his cape...

15 Month Appointment

I can't believe my baby boy is already 15 months old!  He is growing up so much faster than the twins did.  His growth has slowed down, but we think that is due to his current battle with C Diff.  At his appointment he was 31.5 inches long, 24 pounds, and his head circumference was 48cm.  They are very happy with his development and see no concerns at all.  The majority of the time we spent talking about the C Diff and what the new plan of action would be.  She explained that many pediatricians don't have a lot of experience with C Diff, but luckily for us she does.  The old pediatrician only put him on 7 day courses of the medication.  We would see improvement at about day 5, but then he would regress once the medication was done.  The new doctor told me it is best to do 14 days of the Flagyl and then re-test his stool.  We are on day 6 and see a huge improvement.  He is back to eating and no longer has the very nasty watery diarrhea.  He is not fully back to himself, but we are hopeful after 14 days he will be.  While there she did take a urine sample because she wanted to rule out a UTI which can also cause diarrhea.  The preliminary test in the office was ok, but they sent it out to the lab for more in-depth testing.  I received a call yesterday saying the report showed some abnormalities.  The bad part is that the medication he would need for that could cause the C Diff to come back.  Since he is doing so well we are going to wait and re-test the stool and urine at the end of the 14 days.  If he gets worse or starts to have a fever we will have to re-think the current plan, but for now he seems good.

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

Baby Boy is 1!

I can't believe Tyler is 1 already.  This year has flown by so quickly.  I remember the events minute by minute as they occurred on the day he was born.  He caught us by surprise and decided to come 1 day before my scheduled c-section date.  This meant all of our planning went right out the window.  Zak & Ryder rode in the car with me (yes, I drove myself to the hospital) while Ben dropped his work truck off at his office.  The boys got to see me just before having my c-section and then came back the next day to meet Tyler.

Tyler had his 1 year appointment this week with the pediatrician.  They are very happy with his development and pretty much said to just keep doing what we are doing.  He was 22lb 11oz which is the 50%, 31.5 inches long which is the 95%, and his head circumference was 47cm which is the 75%.  So he is growing well.  He has gained a total of about 14.5 pounds and grown 11.5 inches in his first year of life.

His newest skill is walking!!  Here is a video...

Tyler's 9 Month Check-Up

This morning I took Tyler to the pediatrician for his 9 month check-up.  As always, he is a big boy.  He weighs 21 lb 6oz (75%), is 29 inches long (77%), and his head circumference was 46cm (77%).  It is kind of funny to compare him to the older 2 at this age.  According to their growth charts they did not hit this weight until 19 and 21 months old!  The doctor said Tyler is doing great developmentally and to continue letting him eat as he is.  We did talk about his habit of biting though.

Update

I promised to post an update so here I go...

April:  I am still searching for a job.  I have sent out several applications and resumes to various places.  I have applied for a few jobs through the county school system which would be ideal to have summers off, but still haven't heard back from two of them (one already got filled).  I have also been looking into daycare options for Tyler as well as before & after care for the older two.  There are some options out there, but everything is so expensive.  Once I do get a job I am going to apply for daycare assistance through the county which will help partially pay for daycare.

Ben:  Ben has been coming over to see the boys most Thursdays and then on many weekends.  We are still working out scheduling for the weekends since we only have the 1 car.  We are working towards an every other weekend schedule, but as things come up (such as the boys' first basketball game) we have been pretty random with the schedule for now.  Ben & I are still on good enough terms to really be able to talk, work things out regarding finances & the boys, and have some family time for the boys to enjoy.

Zak:  Zak seems to be the only one who understands what is going on with Ben & I.  Not that he knows all of the details, but he seems to really understand that daddy doesn't live here anymore even though he gets to see him still.  He is doing very good in school which is great.  As always, Zak loves his baby brother and is constantly playing with him.  Unfortunately, his newest obsession is video games.  He asks to play games on the Wii every second that he is awake and not at school.  We are having to put limits on the gaming time as well as turning it off if he gets overly competitive about it.  As an alternate sometimes he is allowed to play educational games on the Leap Pad or good old board games.

Ryder:  Ryder has been extremely emotional recently (started before Ben moved out).  He is doing OK in school, but struggles with homework sometimes.  On Monday I took him to Kennedy Krieger for a full day of testing to see if we could determine and issues he might be having that we could help with.  I will get the full written report in the next 4 weeks or so.  They did briefly go over a few things that they found though.  His overall IQ is just below the average range so they said it wasn't anything concerning.  They discovered numbers seem to be a strength for him, but memory and early literacy are his big weaknesses academically.  They feel he is having lots of new skills thrown at him and he is only picking up bits & pieces, but not mastering anything which can become an issue as things get harder and build on the basics.  I am hoping when I give the report to the school they will agree to offer more services to help him in those areas.  I am also looking into social skills groups for Ryder to help with those skills.  After lots of talking with the psychologists who did the testing I realized Ryder thrives and craves 1-on-1 time so I need to figure out a way to provide more of that for him (and Zak).  Ryder feels inferior in many situations within his daily life (school, sports, comparing to Zak, etc) and he doesn't feel that way during 1-on-1 time with me or when playing with younger children.

Tyler:  He is such a big boy.  He is almost 8.5 months old and weighs around 21 pounds.  He is wearing 18 and 24 month clothing already!  He is crawling, pulling up to stand, and cruising around while holding onto furniture.  I have started to use gates to block him from the steps and kitchen to keep him out of trouble.  He loves to play with his brothers and enjoys to cuddle.  He is becoming very talkative now and has the best laugh ever!  He has his 9 month check-up on January 30 so I will update with his new stats after that.

And now for the pictures...