ALS Ice Bucket Challenge

I have been watching many friends, strangers, athletes, and other famous people dumping ice cold water on themselves all for ALS. I knew it was only a matter of time before somebody in our house was nominated to take part. That time has come today. Zak and Ryder were both nominated by a friend from scouts and baseball. When we received that challenge through Facebook I decided to take the time to use it as a quick learning experience. I first asked the boys if they knew what the ice bucket challenge was and both immediately said yes. But they couldn't tell me why people were doing it. So that is when I sat down with them and explained what ALS is. I showed them some videos online and described it a bit. Then I went into explaining about charities and how/why people donate to them. We looked at The ALS Foundation website and the boys decided to each donate $10 from their birthday money to this charity. The boys wanted to share their videos on here for others to see who may not be on Facebook.

Ryder's ALS Ice Bucket Challenge Video

Zak's ALS Ice Bucket Challenge

Planning and Scheduling

As I tell people our plan to homeschool I have gotten all kinds of reactions. One response I tend to get fairly often is asking how the boys are going to socialize and have time with others kids. Well, as we get closer to officially starting our school year I have started to figure out our schedule and fill in the calendar. I am quickly realizing that we are going to be very busy and have lots of opportunities for the boys to socialize. Most importantly, my boys are going to get the chance to learn in real life situations and hands-on activities are going to be key to their learning at home. If you think about it, when in the real world are you stuck in a room with people all your age for the whole day? That is exactly what a brick and mortar school does with kids yet naysayers of homeschooling question whether kids are being sheltered/socialized. I have been able to network and get connected with other homeschool families in the area which has been wonderful. I want to use this post to give some insight into the plan I have for the boys this year and hopefully many years to come with homeschooling. They will be well socialized, well rounded, and well educated boys. So here goes, some of the big aspects of my plan:

Learning Together Co-Op: This is the co-op we have joined this year. This is a group of homeschool families who all come together at a church once a week. We will be meeting on Wednesdays (once a month it switches to Tuesday) from 10:30am-3:30pm. They have the children split up into groups (Nursery, Pre-K, K-1st, 1st-2nd, 3rd-4th, 5th up, 7th up) and offer a different "class" each hour including a lunch break in the middle of the day. The classes Zak & Ryder will be doing with their 1st-2nd grade friends include World Geography/Cultures, Sign Language/Music, Science, and Art. Tyler will be in the nursery with other kids who are his age or younger. The nursery has 2 adults every hour and they plan short activities for the kids in addition to free play. This is a huge reason we chose to join this particular co-op because Tyler could be involved as well. Another aspect of a co-op is that the parents are the ones teaching the classes and running the whole thing. This year I am going to be in the nursery for 2 hours, assisting with sign language, and co-teaching Pre-K Science/Math.

Field Trips: We have already taken a few field trips to log into our homeschool portfolio. The great thing about homeschooling is the ability to go on field trips all the time. There are a few Facebook groups that schedule field trips for homeschool families so I have been watching those and signing up as things come up. You can really count just about any outing as a field trip to be honest. So far the boys have done 2 cavern tours, National Mall (monuments & memorials), DC Zoo, and tomorrow we are going to Fort McHenry with cub scouts. I have found some quick and easy educational games and print outs for the boys to do during our field trips. One really neat thing I found is the Junior Ranger Program which has packets to complete for various parks around the US.

Library Classes: Harford County has several educational programs offered to children throughout the year. Usually they are in the evening on the weekends because they are not geared just towards homeschoolers. This Fall there is going to be a Homeschool Health class being taught by a local homeschool mom so that should be fun. We have taken advantage of some of these classes over the summer and the boys loved it.

DIY Club: We have joined a local homeschool club. There is a really neat website called DIY which has various skills. Within each skill there are challenges for the kids to complete, take pictures, and post onto their profile. They can get patches for completing each skill. One of our friends actually started this DIY group and it will start in September. We will meet twice a month to have the kids all work together on the skills. Some of the ones my boys are looking forward to include Cardboarder, Tape Ninja, Angler, Archer, Astronomer, Athlete, Baker, LEGO Master, and Photographer. To be honest, they really want to do all of the skills.

Conowingo-Rising Sun Christian School: This is the name of the umbrella we joined. In Maryland homeschoolers have 2 options. They can get reviewed by the county school system or you can go with an umbrella. Each umbrella works differently so I looked into a few different ones. We chose to go with an umbrella because the person who would do the reviews through the county is somebody that I do not have a great relationship with. Also, the county has recently started requiring things that are not legally required and threatening to make parents send their kids back to public school. I felt it was best to avoid that and go with the umbrella. The one we chose does peer reviews which means other homeschool families will do the review. I feel this is a great way to go because they know what we are going through, understand what we are doing, and can offer constructive help.

I have utilized the many homeschooling Facebook groups out there for help, information, guidance, and support. They have some amazing people on there who are more than willing to help out and answer questions. One of my big hurdles was to try and figure out how to make up a schedule for us to try and follow. So I went to Facebook and put that question out there. After reading through the tons of responses I sat down and worked out a plan. I had to get my mindset out of the regular school day and really think from a homeschooling standpoint. While homeschooling you don't spend 6+ hours schooling everyday and you don't always do every subject everyday. Below is the rough schedule I have come up with for this year. As we get the year started things might change and that is fine.

Monday: Math, Language Arts, Reading/Phonics, Social Studies, Science
Tuesday: Math, Reading/Phonics, Social Studies, Bible
Wednesday: Co-Op (Social Studies, Science, Music, Art)
Thursday: Math, Reading/Phonics, Social Studies
Friday: Math, Reading/Phonics, Science, Health

I wanted to include the boys in making up the schedule and choosing some of what they will learn. They really wanted to do Geography so I incorporated map skills into our weekly schedule. I explained to them they would be doing World Geography at the Co-Op. The had the biggest input when it came to picking out their science thematic units. I chose not to just go and buy a boxed curriculum. I am putting things together myself and gearing each subject towards what they need to work on and things they enjoy. Here are the basic plans/goals for this year in each subject:

Math: I did decide to primarily use a curriculum already put together for math. It is called Math Mammoth. I chose this one after looking into lots of different options and talking to others who have used this as well as other options. We will use it this year and see how it goes. I am also going to incorporate Life of Fred books later in the year. These books take a very interesting and out of the box approach to teaching math. It is set up like a chapter book which you read. At the end of each chapter there are practice questions for the kids to do which go over the different skills used within that chapter. I am hoping this will help work on reading comprehension, reading, and math skills.

Language Arts: I am planning to use a free program that was suggested to me. I am not completely set on this for the future, but it will work for now. I am going to incorporate a good amount of writing through the use of a journal. We will work on grammar once a week and then use those skills for journal writing later in the week. I have also found a few really fun and interactive online games to work on grammar skills.

Reading/Phonics: For this area I am going to have the boys doing different things since they are at very different levels. I will be using Explode The Code workbooks with Ryder. There are 8 books and then a few extra practice books between the main ones. He has already finished Book 1 and seemed to enjoy it. Zak will be using Abecka Letters & Sounds 2. I have heard great things about both of these programs and they seem to fit each of the boys well. Those are the phonics programs and then I am going to be using 2 different reading comprehension workbooks for them as well. They will be short stories (at each of their levels) with some questions to check comprehension.

Social Studies: This is an area where I do not feel very knowledgeable at all. I once again went to the Facebook groups for suggestions. After looking into various options I decided to try out Story of the World which is written as a chapter book, but goes through history in a chronological order. The chapters are short and there is an activity book to go along with the text. They have pages and pages of ideas for fun hands-on activities which look fun. This is where I will be putting the map skills in weekly as well.

Science: I allowed the boys to pick out the first few thematic units we will be doing for science. They chose the Solar System, Weather, Life Cycle of Butterfly, Life Cycle of Frog, and the Human Body. I have been searching the Internet finding tons of free or cheap resources and activities to fit into these units. The first 6 week so the school year we will be covering the Solar System which they are very excited about. Once these units are complete I did find a really fun curriculum that we might start using. REAL Science Odyssey has different choices for elementary school including Life/Biology (this is the one I have), Earth & Space, and Chemistry.

Bible: We are going to be incorporating religion in to our schedule for a few reasons. The umbrella we joined requires a religion aspect which is fine. Also, I feel it is good for the boys to get a general knowledge about religion, the Bible, and religions around the world as well. I have not really found any set curriculum yet. I have found a few fun hands-on activities to go along with the main stories of the bible so we will start there for now.

Health: I have found some free programs to use for Health. They basically work on hygiene, safety, and nutrition. We will also be taking part in the Homeschool Health class at the local library.

Music & Art: The boys will be getting these subjects at the Co-Op. I am also planning to teach them about famous composers and artists throughout the year.

PE: This can really be done everyday so no real curriculum is needed.

A New Adventure

I have not been posting on the blog for several reasons, but really it comes down to not having the time honestly. I have been taking online college courses, watching my friend's kids during the week (which I love doing and Tyler has a blast with them), doing sports with the twins, cub scouts, and the list could go on and on. I am hoping to get back into blogging more often. We are about to start a new adventure in our house so I felt this was a good time to give an update and start blogging on a more regular basis. So here goes...

April: I have been struggling with 2 wisdom teeth coming in. I can't believe the amount of pain they are causing! Other than that I am just doing the same old with taking college classes and watching EJ & Mya. I have met a few new friends through cub scouts and will be taking on a bigger role this coming year. I am going to take over the popcorn fundraiser as well as being an assistant den leader. I have been pretty busy the last few weeks with something that I will discuss later because it involves our new adventure.

Ben: He has been very busy at work recently including some traveling. This year he took on a lot of responsibility in the Edgewood baseball program which has been time consuming, but he loves it and the kids really benefit from it. Through a connection at work he was able to get a very good estimate to have our backyard worked on. He pulled up the deck and today the concrete company came and filled in the potholes then put down a concrete slab patio.

Zak: He was recently diagnosed with ADHD by a psychiatrist. They sent us for blood work, EKG, and echo-cardiogram. Once they all showed everything was good the psychiatrist started him on a medication, Concerta. It seems like everyone in our house had a rough winter with illness, but Zak seems to have picked up everything and sometimes more than once. Now we are dealing with allergies. Zak is loving baseball this year as expected and also enjoys going to cub scout events.

Ryder: He has been struggling in school which has led to him having low self-esteem. It has been a very rough year for him academically which has been so hard to watch. He doesn't enjoy school or learning anymore. Ryder is playing baseball, but is not as enthusiastic about it. We started seeing a new Immunologist who is at Children's in DC. We have fund cub scouts to be an amazing program for Ryder because he seems to really come out of his shell at all of the events. In the picture below he looks terrible though because he was feeling sick that last night of camping.

Tyler: This boy is growing up so fast! I can't believe he is 2 already. He is a ball of energy and ALL boy. He loves balls. Really more accurately he is OBSESSED with balls. That is all he wants to play with, talk about, or watch. He now weighs 28 pounds and is almost 36 inches tall. He can wear the same size shorts as Zak! Unfortunately, he has started climbing out of his crib which makes nap time and bedtime almost impossible. Over this past winter Tyler ended up with various illnesses including C Diff and MRSA. The new Immunologist is keeping a close eye on his immune system, but we hope he will grow out of it.

One big thing that has recently happened is the loss of Robin. She got very sick and after doing some blood work and trying some medication we decided it was best to let her go and put her down. It was very sad and so hard to watch the boys have to say good-bye to her.

 Now for the news about our new adventure...Homeschooling. Ben and I have been discussing this as a possibility all year. We have talked about the pros and cons for a while. Ryder is struggling so badly with reading and writing. We have been battling with the school all year trying to get him extra help. He just recently got an IEP, but they are not really going to work on those skills. Instead, they have given him a scribe and human reader. That is one reason we made this decision. Another is the fact that in school they are pretty much teaching reading with whole language and sight words. Ryder does not do well with this and needs a phonics program. He is so determined that he isn't allowed to sound out words because his teacher tells him not to. It is so sad because when he sits down with me he can sound out words and read a bit. School this year has just beat him down so badly that he is not picking up anything. We talked to both boys about homeschooling and asked what they thought about it. Initially, Zak said no way he wanted to go to school with his friends so we told him that was fine. Ryder has been excited about it from the start and asks everyday if he can start homeschool now and never go back to school. I have been researching various different types of curriculum and went to a homeschool fair. So far I have a lot of good resources and plans for next year. I also found a co-op in our county that meets on Wednesdays. They have a nursery for younger siblings which is perfect for Tyler. Generally, for Ryder's age they have art, music, history, PE, and various other things depending on what the rest of the families want as well. My plan is to send in the intent to homeschool form the last day of school so we can start with some homeschooling activities and field trips over the summer. I plan to de-school a bit to get Ryder back to enjoying to learn before adding in new skills to challenge him. Now Zak is having second thoughts and thinks he might want to homeschool as well. Not sure what he will end up doing, but I will be sure to keep everyone updated. I realize everybody has differing views on homeschooling and I feel that is perfectly fine. It may not be for everybody, but we have come to this decision after a lot of talking and looking into things.

Another recent development is we will be rearranging bedrooms. Zak and Ryder do not lay down and go to sleep well in the same room. Usually we have to separate them and put one in our room to fall asleep. Ryder wants his own room so badly. Ryder will move into Tyler's room and get a loft bed with a desk underneath. Then Tyler will move into Zak's room with him since he is climbing out of his crib anyways and goes in there to lay down most times.

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.