Many Adventures of Zak & Ryder

Getting Ready for Tyler

2012-01-30T15:13:00.002-05:00

Recently I have started to really feel the need to start getting things ready for Tyler's arrival. I will be 26 weeks along tomorrow and am started to feel very pregnant so I want to get things done while I still feel able to. We are going to turn the playroom into Tyler's room which means the boys' bedroom will also be their playroom.

This weekend we moved the toys into the boys' bedroom. Now we need to figure out exactly how we plan to organize the toys because right now their room is chaos and filled with lots of stuff. We are going to hang the TV on the wall and get rid of the dresser it is sitting. Then we are going to get some storage bins that fit under their bed to help hide some of the clutter. We are also looking into various storage units for their room. So far they are very excited about having the toys in their room and just fine with Tyler taking over the other room.

We also started to get some baby stuff that we need for Tyler. Babies R Us is having a big trade-in event so we took advantage of that. We traded in an old car seat, exersaucer (used by Piper, the boys, and Maddie), and stroller (no need for a double anymore). That gave us 25% off three new items. We got a new travel system (actually my mom bought this for us as a gift), exersaucer, and high chair. The boys were very helpful in picking out the things we got, they enjoyed trying out the various strollers. We also started to look into dressers for Tyler's room and found one at Ikea we like. It is the perfect height to also be used as a changing table which we never had with the boys.

Dresser (not sure what color we would do yet)

High Chair

It turns into toddler seat, booster seat and a regular chair

Travel System

Exersaucer

It is a play mat, exersaucer, and standing toy

As you can see, we really like the products that have multiple purposes and grow with the baby. It helps save some room and money! Once Tyler is a little bigger we plan to get another Radian car seat (like the boys use) because they fit well 3-across in our car. The newer version of the car seat actually works for rear-facing, forward-facing, and a booster seat. We plan to keep Tyler rear-facing as long as possible (the boys were over 3 when they turned forward) and this seat would allow for that.

We are also talking about what color to paint the room. The only room in the house we have painted since moving in is the boys' bedroom. So we figure if we don't paint it now then it probably won't ever get done. At the moment we are pretty sure it will end up being green because the boys think that is the right color. We want them to be involved as much as possible.

Immunologist Appointment

2012-01-23T12:03:00.002-05:00

This morning we had Ryder's Immunology appointment. He gets blood work done every 6 months and then we have an appointment to go over everything. His blood work looks really good which is always nice to hear. His overall IgG is up to 952 which is much higher than he started at and is now in the normal range. They also look at specific antibodies within the system and he is showing protective levels in 10 of the 14 they look at which is great since he was none to begin with. We will keep his weekly infusion dose the same for now.

We talked about the infections Ryder has been having which tend to be sinus, strep or pneumonia. He has been on antibiotics 8 times in the last year which they consider too much still. After doing an exam the Immunologist agrees with Ryder's pediatrician that his tonsils are probably the culprit. He has HUGE tonsils which always look red. The Immunologist said they could be harboring infection in them which could also be the cause for his chronically swollen lymph node behind his ear. So we have an appointment with an ENT on February 16. The Immunologist works closely with this ENT so they know how to handle CVID patients. It looks like we will probably be planning a surgery date for Ryder after the ENT appointment to get his tonsils (possibly adenoids too) out.

A quick update on myself and the baby. I had an OB appointment last week. Everything looked good with myself (urinalysis and blood pressure). I have gained about 9.5 pounds so far and will be 25 weeks along tomorrow. The baby's heart rate was in the 130s and seems to be measuring about a week ahead. I talked to the OB about my concern of having another hernia and she confirmed that I definitely do have one. Last pregnancy I had one on the left of my belly button and one under my belly button which were both surgically fixed when the boys were about 11 months old. This time the hernia is to the right of my belly button. This means I will be needing surgery once again at some point after I have this baby. Not looking forward to it. We will probably put it off as long as possible because Ben will use his time off for the delivery of the baby and my c-section recovery. So he won't have more time off until 2013. The recovery from the hernia surgery will not allow me to pick up the baby or the boys for 2 weeks so I will need help.

Fetal Echo Appointment & Name

2012-01-10T07:49:00.001-05:00

Things have been pretty crazy since we got home on January 3. We have not even completely unloaded the car from our trip yet! I had a fetal echo ultrasound done on January 5. This test was scheduled because mothers with Diabetes have a higher risk of having a baby with heart defects. The test showed the baby's heart looks good with no obvious problems. They went ahead and did a growth scan as well. So as of January 5 (I was 22 weeks) the baby weighed 1lb 2oz and everything looked good. My cervix was also still looking really good. I see the OB next week for a regular appointment and then I have another growth scan on January 31. I will have growth scans every 4 weeks until I deliver.

I announced the name we had chosen on Facebook while in Florida, but in case you missed it I wanted to add that here too. The boys are now using his name all the time so we decided it was time to let everyone know....

Tyler Luke Croissant

Pictures from Florida

2012-01-01T07:52:00.003-05:00

I just wanted to post a few links real quick. I have been posting pictures from our trip to FL on my Facebook page. Here are the links to those photo albums for people to see who don't have Facebook. We leave FL tomorrow and will get home on Tuesday.

Christmas in FL

Zoo in FL

The baby is a....

2011-12-12T14:35:00.004-05:00

BOY!

Today Ben & I got to see the baby for our anatomy scan. They looked at all of the organs and said everything looks good. They also measured my cervix since 19 weeks is when I started to have issues with the boys, but everything looks great so far. I will go back for a fetal echo cardiogram on January 5 which is a few days after we get home from FL. This scan is done to take a close look at the heart since my Diabetes puts the baby at a slightly higher risk for heart defects, but as of today it looks good. I look forward to getting to see the baby again!

Ben was definitely disappointed we are not having a little girl. We made the decision before getting pregnant that this will be our last baby so I plan to have my tubes tied during the c-section when I deliver this baby. He is very happy that this baby is healthy and things look great. I will admit some disappointment as well since Ben & my mom had done a good job of convincing me this was going to be a girl. But deep down I love the idea of having another boy! We had a girl name picked out very easily, but now have to go back to the drawing board to come up with a boy name. We have both thrown around a few names, but none that we could agree on.

School Pictures

2011-12-09T13:52:00.005-05:00

The boys had their pre-k pictures done in November and we finally received them. I am so happy with how well they turned out! I know looking back at my school pictures I am not pleased with any of them, but I think these of the boys are really good.

I know I have been slacking on the blog. We have been really busy with the holidays coming up. We need to get all of the gifts bought and wrapped along with the house picked up and everything else ready for our trip. We are leaving December 22 on the auto train to go to FL and visit my mom for Christmas. I am so excited! We have told the boys they are going on vacation and getting to ride a train, but have not told them where we are going. It is going to be a big surprise for them. We will get back to MD on January 3 so it will be a nice vacation.

Zak has really been misbehaving recently. It seems to be a huge power struggle between him and myself. I know he is testing limits and this phase will end at some point, but it makes it so difficult some days. He is doing well in school and seems to really enjoy it. We were told he is definitely a social butterfly in the classroom.

Ryder has been struggling with behavior issues as well. He started on a medication for ADHD and irritability in September, but the positive effects we did see wore off. We have recently had to increase the dosage and hope to see the positive results once again. He also had a potty training regression, but that seems to be much better now.

I have been doing well. I am still having issues with morning sickness which is no fun and insomnia has been pretty bad as well. I did start weekly progesterone shots (17P shots) to try and help prevent pre-term labor this pregnancy. There is a nurse who comes to the house each Friday to do the shots which is nice. I have my anatomy scan on Monday and we are hoping the baby cooperates so we can find out the gender!

Ben has been working a lot recently. He has been in Kansas City all this week for training.

Surprise!

2011-10-24T17:16:00.009-04:00

We are very excited to introduce the newest member of our family to everyone! We are expecting a baby May 8, 2012! I had my 12 week scan today and everything looks great. The heart rate was 155 and baby was very active the whole time.

This pregnancy has been very different from my pregnancy with the boys. I found out pretty early on and have been experiencing some pretty bad morning sickness. My doctor has given me medication to help with the morning sickness, but it is causing really bad headaches. I am having the normal back pain, cramps, and just overall feeling pregnant. I have to say I don't remember feeling most of this with the boys. I have told Ben several times that I am glad we had decided this would be our last baby because if not at this point I would definitely be saying that. I am not sure how people do this more than once if they feel like this every time. I now realize how lucky I was with my pregnancy with the boys. This is the main reason why I have fallen behind on posting to the blog. Things have been busy with the boys in school, Ryder's weekly therapy session, and recently both boys have been battling illnesses. I have been slacking with a lot due to not feeling great, but luckily Ben has been awesome and helped pick up the slack. I am really hoping the morning sickness passes soon so I can stop taking the medication which will hopefully decrease these horrible headaches. I will say that I already have a definite baby bump and have had a few people question my stomach. I had a very close friend (practically family), a family member and the nurse at the pediatrician all ask some sort of question about being pregnant or when I was due! So I am not able to hide it any longer plus with the good ultrasound today we decided it was time to share the good news.

I have been seeing my regular OB every 2 weeks just to keep a close eye on everything due to my Diabetes. They have done lots of the normal pregnancy testing along with checking on my kidneys and a few other things which have all come back very good. I have also met with the high risk OB at Franklin Square Hospital (which is where I will deliver) and have a plan in place to e-mail my blood sugar numbers to them every week. We have been talking about a few things that might be options this time around to help prevent pre-term labor, but most of the doctors really believe I had the boys early because my torso is so short and there were two of them. At the moment the plan is just to keep a close eye on everything with frequent appointments and ultrasounds. So far my blood sugars are under good control and I feel very good about all of the doctors who are involved. I should have the big anatomy scan in December just before we leave for FL so I will definitely update after that.

This afternoon we showed the ultrasound picture to the boys and asked if they knew what it was. Ryder really had no clue, but Zak quickly said "It's a monkey!". Then we asked if they wanted a baby and Ryder said "yes" while Zak said "maybe". We told them the picture was a baby and that the baby was in my belly. They don't seem to really understand, but I am sure as time goes on they will figure it out.

Apple Picking

2011-10-01T17:09:00.000-04:00

We had been talking about going to a pumpkin patch with the boys, but once I started looking online we decided going apple picking would be more fun. I found a place in Westminster, MD that looked like fun so off we went.

We walked around the market section first then went to the wagon ride to the apple orchard.

The boys had a blast picking apples and filling their own bags. We ended up with about 25 pounds of apples once we were all done.

After we finished picking apples the boys had fun playing in the bounce house for a bit. Then we left and stopped at IHOP for lunch before heading back home. It was a fun day!

First Day of Preschool

2011-09-01T17:01:00.000-04:00

The boys' first day of school was pushed back because of the hurricane and flooding we had. They were both very excited about riding the bus and going to school!

The weather on their first day of school was not all that great. It was raining pretty hard, but I was still able to get a few pictures.

4 Years Old

2011-08-17T20:44:00.002-04:00

Things have been crazy around here so I have not been able to get a minute to make any posts. I am going to try and make a few to catch up with what we have been doing.

The boys turned 4 on August 5 and I just can't believe it! They have grown up so fast. It seems like every time we look at them they just look so grown up all of a sudden. Today they had their 4 year pediatrician appointment. We talked about development, vaccines (Zak got 3), and current concerns.

Zak weighed 32 pounds (15%) and is 39 inches tall (20%). He did good with all of the development questions which I knew he would. We are increasing his Flovent inhaler to 2 puffs twice a day in hopes of preventing a lot of lung issues once school starts. He did great for his vaccines today, but tonight his arms are sore.

Ryder weighed 31 pounds (9%) and is 40 inches tall (41%). He did pretty good with the development stuff, but not as well as Zak which I figured would happen. We discussed some recent concerns about regression and behavior issues. Our pediatrician is also a developmental pediatrician so he knows most of Ryder's specialists and is very helpful since he understands everything that is going on (more so than the average pediatrician would). Ryder didn't get any vaccines since he is not supposed to because of his CVID. I will make another post discussing everything that is going on with Ryder recently.

Both boys will have to go back for a flu shot. We normally don't do them, but the Immunologist has asked us to get them for both boys so we will. The pediatrician only had the FluMist which neither of the boys can get so we need to wait for the shot to come in.

Family Reunion

2011-08-09T21:13:00.000-04:00

Our road trip to KY for the family reunion went well overall. We left at 3:15am on Friday August 5 and got to KY around 1:15pm. I met with Colleen about an hour from the house so we could follow each other and stop together which was nice. On Friday we didn't do too much other than unpack, open gifts for the boys, and have dinner.

Colleen and her kids camped in a tent

My mom, Piper, myself and the boys stayed in a cabin

along with Shirley and Christine

Piper & the boys decided to have a sleepover in my bedroom

On Saturday we took all of the kids to the pool for a while. In the early afternoon Christine and Jamison went to the museum while everyone else napped. Then we took the kids all the play mini-golf which they all enjoyed. We did have an accident at the end where Piper hit Jamison with a golf club by accident (she swung way too hard and Jamison was way too close).

Ryder laying in the tent

Saturday evening we cooked dinner on the campfire. The kids had a blast just playing all evening. Some of the other family members had arrived so we had a big campfire and hung out for a while.

We also had a pinata for the boys' birthday which all of the kids enjoyed!

We were up late Saturday night because we didn't even go back to the cabin until after 10pm, but it was lots of fun. I enjoyed meeting people in person that I have been talking to online, people I never knew existed, and people I have not seen for a very long time! Sunday was the actual reunion so a few errands had to be run that morning. I stayed at the cabin with some of the kids while Colleen took Zak & Jamison.

Boys' birthday cake

We took lots of pictures at the reunion. I did miss the first generation picture because I didn't realize they had started. There were 5 generations at the reunion which was really neat.

Generation 2

Generation 3 (my mom)

Generation 4 (me)

Generation 5 (the boys)

After the reunion the kids went for a short hike looking for fire wood. Then we did another dinner on the campfire. Most people had left after the reunion and the campground was pretty deserted.
We left KY around 9am on Monday August 8 and got home just after 8pm. It was a very long drive home with more stops than on the way there because Colleen & I were having trouble staying awake. I definitely learned if I am making a long drive that I need to leave in the middle of the night!

Tons of Videos

2011-07-31T20:48:00.003-04:00

The last 2 days the boys have both made huge improvements with their swimming skills so of course we took a bunch of videos. Zak went from swimming with his swim vest to swimming with nothing! Ryder went from not willing to jump into the pool or go underwater to jumping in without even arm floaties!

Zak swimming on his own for the first time (yesterday)

Ryder jumping in with floaties yesterday

Zak showing off his new swimming skills to Nanny & Poppy today

Zak got very brave and pretty much stayed without his vest the whole time so we had to be better about really watching him because he would just jump and start swimming then sometimes need help.

Zak put on his vest for a little after he got tired. Here he is practicing his diving.

Ryder decided to join in

Ryder also decided he wanted to jump in with no floaties

Right before we left the boys drove around on their "monster truck" which they always love to do!

This week is going to be busy. I need to get laundry done, clothes packed for our trip, run some errands for a few last minute things, and get everything else packed. Ryder has therapy on Wednesday and I will take them to the $1 movie on Tuesday. We pick Christine up on Thursday and then head out on the road around 3am Friday morning!

Bike Riding Videos

2011-07-17T18:05:00.006-04:00

I wanted to first explain the new blog background I chose. The boys & I are taking a road trip the first weekend of August to Kentucky for a family reunion. I am excited to go and see my mom along with other family members. The boys have been talking about our "trip to tuckey" ever since they talked about it with Jamison on Friday. So I felt this background fit pretty well for now.

Today Zak asked to have his training wheels taken off his bike! I think it had a lot to do with the little boy who lives across the street from us. He is about 3 months older than the boys and has been riding his 2-wheeler bike for a while now and is always telling the boys he can ride. Honestly, today we got very upset with the kid because he was pretty much making fun of Ryder for not being able to even pedal a bike! So Ben took the training wheels off, I grabbed the camera and this is what we got....

(the sound is pretty loud so you might want to turn the volume down or off)

This video I did freak out at the end because I thought he was doing a little too well and was heading straight for the road. I think if I had kept my mouth shut he may not have fallen over.

He did better than I thought he would and every time he fell he got right back up and wanted to try again. He would laugh many times when he fell. We are very proud of him!

Of course we couldn't leave Ryder out of the fun! He practiced on his bike for a little while, but once he gets too frustrated we suggest it is time for the scooter. I didn't get the camera out quick enough because by this time he had pretty much had enough. Poor guy is trying so hard though!

Soccer & Playground

2011-07-17T09:00:00.000-04:00

This morning we took the boys to the playground for a little bit. They started by playing some soccer and football then moved to the playground. Zak really is an athletic kid and picks up pretty much any sport fairly easily. The boys miss the cut off for soccer this year by only 5 days so they will have to wait until next year.

Of course I stood on the wrong side of the sun was shining right into the camera. The quality is horrible, but you get the point. He did it a few times before I got the camera out which always happens so I didn't get his best ones on video. When Ben is holding his butt he is only helping him swing a bit and not holding any of his weight.

Zak thought this thing was pretty fun however Ryder didn't like it. We have made huge progress in Ryder's vestibular issues, but he still has things to work on. He dislikes swings for the same reason he dislikes this spinning.

Day at the Zoo

2011-07-15T18:19:00.001-04:00

This morning the boys & I left the house at 7:30am to meet up with Colleen, Joey & Jamison at the metro so we could go to the DC Zoo. The boys were very excited about riding the train, seeing the animals, and hanging out with Joey & Jamison. We got home around 6:30pm so it was a long, but very fun day!

This deer was not part of the exhibits at the zoo. It had wandered into the zoo and was just walking around with all the people. It didn't seem to mind people getting close to it. It did decide to run away after a little while though.

These two were so fun to watch. I took a ton of pictures of them! It was a baby and mother that were playing the whole time.

I loved watching the big daddy lion playing with the lion cubs!

The boys got to pet a few animals in the children's area which they thought was very cool.

All three of the boys thought it was funny how the Toucan was talking to them. This bird was following them around the exhibit just yelling at them. It was pretty funny to watch. Of course once I got the camera out it just stayed in one place.

Swimming Videos

2011-07-13T19:32:00.005-04:00

Today at the pool I took the camera so I was able to take a bunch of videos. All of the videos are pretty loud because there was a party going on with a DJ so you can't hear anything the boys are saying, but that is not the important part anyways!

4th of July

2011-07-07T09:33:00.009-04:00

On Monday we spent the day in Annapolis. I always look forward to 4th of July in Annapolis and the boys do as well. We left our house around 10:30am and got home close to midnight so it was a very long day, but we all had a great time!

When we first got to Annapolis the boys played in the yard with Jamison for a while.

They took turns playing all 3 positions

(catcher, batter, pitcher)

Hockey was the least successful

After we had lunch the four of us walked to see some of my friends. Our first stop was to play with kitties. Many of you will think we are crazy (which we already know) when I tell you that we are looking at getting a new kitten. VZ is really my cat although Zak has pretty much won her over and taken her from me. Ryder tries so hard to get on her good side, but she just doesn't seem to like him very much. He is always saying he wants a cat that says meow and actually said he wants one for his birthday. So we are thinking about getting a Turkish Angora kitten for him because every time we go to my friend's house her cats are all so social and let both boys pick them up and play with them. Then we walked around the corner to see another friend and catch up since we have not talked in a while. The boys had fun playing with all of the kids there at the block party as well as getting to feed the fish in their fish pond.

Once we got back to Colleen's house we pulled out some water toys for the kids to play with since it was pretty hot. They played with a sprinkler and a water hopscotch game. Ryder spent a lot of the afternoon eating the watermelon though.

Of course there had to be a lemonade stand. This year there were lots of helping hands so for next year Joey is already talking about setting up multiple sites with all of her little workers!

We then went to the parade at 6:30pm. Nathan was giving out lots of hugs which seemed to always turn into a headlock with Zak. Ryder wanted a hug too.

When we got back to Colleen's after the parade for the cook-out there was a surprise waiting...Chelley, John, and Maddie had come over for a little while. We had a good dinner and then hung out until it was time for fireworks. Chelley, John & Maddie left just before the fireworks because Maddie is not a fan of them.

We tried to get a picture of all of the kids and this was the best we got.

Behavior Therapy

2011-06-27T19:49:00.001-04:00

Today the boys and I went to Kennedy Krieger's Behavior Therapy department in Baltimore for an initial meeting with a therapist to discuss some stuff that is going on with Ryder. It takes us about 30 minutes to get there, but it is a straight shot and easy to find which is nice. The boys were both upset when they saw the valet parking people drive off with our car so I had to reassure them multiple times that they would bring our car back when we were done.

We went into one of the therapy rooms and started talking with the therapist. Unfortunately, they are doing some construction on the floor below and happened to start using a saw and hammer directly below us. As soon as that started Ryder was in tears jumping into my arms so we moved to a different room which was much quieter. I came prepared this time with crayons and paper to keep the boys occupied while I talked with the therapist. We were there for almost 2 hours and I feel she really listened and heard what our concerns were. She asked tons of questions and had obviously read all of Ryder's past history because she knew a ton of what was going on. Then she made a list of things that she heard and felt we could & should address through therapy. Some of the things we will work on include needle phobia, violent tantrums, bedtime tantrums, mealtime tantrums, aggressive outbursts, and potty training.

We chose to start with the needle phobia since he has to get those infusions and the way we go about it now with Ben restraining him will just make it harder and worse long-term. His first therapy session will be next week on July 6. She went over a few of the techniques we would use and one of them really has me excited. There is something I was told about by a few other parents and I have researched online, but didn't want to just buy it without know how it worked. This thing is called Buzzy and basically it is used to distract the child's feeling of pain. It has an ice pack and it vibrates in order to overload the body with sensations so they won't feel the pain. It is placed in specific areas (depending on where the needle will go) to get the best outcome. At Kennedy Krieger they use this in their therapy so we will get the chance to try it out.

After we make progress with the needle phobia we will move on to the other concerns. The good thing is that she told me generally all of the other things utilize the same behavior plan and therapy techniques.

Fun Weekend

2011-06-27T19:40:00.002-04:00

This weekend was filled with lots of fun stuff. On Saturday we had some friends over for a BBQ and to just hang out. The boys loved having people over to entertain and play with. They also love to play with Kyle (Tracy & Dave's son). We had about 10 people over and had tons of food including crabs.

On Sunday we took the boys to the Orioles game. They were so excited about going to watch baseball since they watch it on TV with Ben all the time. They are members of the Junior Dugout Club so parents get $6 tickets and they have $1 concessions. I wasn't sure how far into the game they would make it, but we ended up leaving during the 6th inning which was pretty good I thought. We had decided to not try any night games since they start so close to their bedtime, but neither of the boys handled the heat very well so we might try one of the night games to see how they do without the sun beating down on them.

Swimming & Other Stuff

2011-06-20T18:59:00.006-04:00

The pool that we joined opened up so we have been spending sometime there. I have taken a few pictures and videos on my cell phone, but unfortunately my cell phone is broken. Long story short is that I no longer have a cell phone. We did order new ones online which should get here Wednesday. I lost everything that was on my phone which includes all of the videos I had taken, but luckily I had already transferred a few of the pictures. Zak does so well in the pool now as long as he has his arm floaties on. He will jump in and swim around the whole time without any help. He has no issues with putting his face under the water and is able to hold his breath for a little while. Ryder is more cautious, but is definitely getting better. It takes him a while to get used to the pool so he tends to be clingy at first. By the time we are ready to leave he is usually kicking around on his own, but won't jump in or put his face under. I have no fears taking them to the pool on my own because of how well they are both doing.

Zak had just jumped into the pool

Now for some pictures from the last week or so. We have been spending a lot of time outside which means lots of dirt and boo-boos.

Zak fell down so that is why he is crying

The boys love to play Kerplunk

Batman uses this little chair as a bed all the time

VZ always lays with her paws crossed

Tricycle

2011-06-20T17:14:00.002-04:00

This afternoon the boys played outside with a bunch of the other kids in our court. They started out on their scooters, but then moved on to borrowing tricycles from other kids. Zak is able to ride his bike with training wheels, but Ryder has yet to be able to pedal his. So when we saw this we were so excited! Apparently, pedaling a tricycle is slightly different because the physical therapist at his school worked with him and said he was able to do a tricycle, but we have not seen it yet.

Zak the Photographer

2011-06-16T16:06:00.002-04:00

Today I let Zak have my camera for a while and he had a blast. He loves taking pictures and I thought it was neat to see his perspective behind the camera. There were tons of pictures, but here are some of the better ones. He made sure to take pictures of important things to him. The first 2 are pictures I took with my phone showing him taking pictures, the rest are ones he took.

The pool in our backyard

I had no clue he was taking a picture of me

The play-doh

Under the futon

Ryder's Last Day of School

2011-06-15T16:23:00.000-04:00

Today was Ryder's last day of school. He has made such huge changes since he started in September. I wanted to post some pictures from his first day and then pictures from today.

September 1, 2010

June 15, 2011

He was a little upset during the pictures today because he was more interested in watching TV. I also wanted to let everyone know that I just found out both boys got spots in the regular pre-k at their home school (where they will go for K) for next school year. I have not gotten the actual acceptance letters, but Ryder's teacher from this year sent me an e-mail telling me she heard they got in (but not to tell anybody she told me!). They will go 5 half days next year.

Storm & Infusion

2011-06-12T17:39:00.003-04:00

I wanted to post some pictures of a recent infusion. We are having some issues with the infusions because Ryder has developed an extreme fear of needles now so he has a lot of anxiety about the infusions. We also realized the numbing cream wasn't working for him because he would let out a horrible scream as the needle would go in. So after talking to other parents who have children with CVID we decided to try a numbing spray which seems to be working better. I actually tried both the cream and spray on myself before inserting my insulin pump and the spray definitely works much better! So now he doesn't really scream as the needle goes in, but still fights the process. We have decided that trying to bribe him or reason with him just makes it go on longer so now we just put him in Ben's lap while I put the needle in. Ben has to hold him pretty tight since he still cries, kicks, and fights, but as soon as I get the needle in and bandage on he is perfectly fine. We are waiting for a call from a play therapy program at Kennedy Krieger that works specifically with kids who require frequent medical treatments.

Zak's treat for being good during Ryder's infusion

Bump after the infusion

It is gone by the next morning

Needle

Later that night Ben got a service call for work so had to leave. Of course while he was gone a horrible storm came. I went outside to take some pictures of the clouds before it started to rain. It was impossible to get great pictures, but I did get some neat ones. I couldn't believe the circular motion the clouds were making. We had tons of tornado warnings with the sirens going saying to take cover and what not. There were actually 2 confirmed tornadoes which touched down not to far from us along with 1 confirmed funnel cloud about 5 miles from us.

Hole In 1

2011-06-06T19:52:00.005-04:00

On Sunday we spent the day in Annapolis. Zak has been asking for some alone time with mommy & daddy without Ryder so we worked out a plan to make it happen. We dropped Ryder off with Colleen & Jamison then took Zak out for a bit. Of course, the whole time Zak was whining that he needed his Ry Ry and wanted to go get him. We had lunch at Fuddruckers which Zak enjoyed because he got to play a few games.

Once we finished lunch Ben suggested we should go play mini-golf which Zak thought was a very good idea. We have taken the boys to play before, but they would just hit the ball around and not really aim for the hole. This time Zak was really good at aiming for the hole and didn't get too frustrated when he missed. The big news is that he actually had a hole in 1!

After mini-golf we went back to Colleen's and hung out for a while. Ryder & Jamison went to the Paca House & Garden with Christine which they both seemed to enjoy. When we left Annapolis Christine came home with us to spend the night. Christine and I decided to go and see the new X-Men movie in the theater and it was really good. This morning Ryder & I went to Kennedy Krieger for his Neuropsych testing while Zak stayed home with Christine. I think Christine and Zak had fun while I was gone because there didn't seem to be any complaints or bad news when we got home.

Ryder's testing went from about 9am until 1pm. There were a few short breaks in there so he handled it great. He is always very good at these types of tests since 1-on-1 with an adult seems to be his ideal situation. At the end they did go over some general results and findings, but I will get an in-depth report in a few weeks. Overall, his IQ is within normal limits for his age. He is functioning at a 2.5 year-old level for a section of the verbal skills which we pretty much already knew. We discussed all of his tantrums, anxiety issues, quirks, and so on. They told me that he does have certain traits under all 3 of the criteria for an Autism diagnosis however they do not feel he should be diagnosed with that. They said looking at the big picture he just isn't presenting as a typical ASD kid even though looking at all of the little "red flags" he does have. They are leaning more towards an ADHD/anxiety diagnosis, but did not diagnose anything today. Once again, they told me he is so "iffy" and borderline with everything that they feel we should not add a diagnosis yet. They want to re-evaluate him in 1 year to see how much progress he has made. They are going to try and help push through his referral to get in with the Behavior Therapy department which is good. We go to see the Developmental Pediatrician at Kennedy Krieger in mid-July so she will have more input then.

Memorial Day Weekend

2011-06-03T17:34:00.010-04:00

There was a local carnival here recently so we took the boys for a little bit one night. They loved playing the game and going on a few rides.

The weather last weekend was very hot. We were in the mid to upper 90s with a lot of humidity. I believe we went over 100 for one or two days as well. Because of the hot weather we got the boys a new pool for the backyard so they have been enjoying that!

On Saturday we took the boys to see Kung Fu Panda 2 at the movie theater. They are so good at the theater so we have taken them to a few movies, I even took them on my own at one point. I am planning to take advantage of the $1 kids movies over the summer.

On Sunday Tracy & Kyle came over to hang out for a while. Zak was excited to show her how well he can ride his bike now. Ryder still has been unable to figure out how to pedal, but our neighbor was trying to help him for a while. Then we went to the backyard and played with the water table and pool. Kyle was a bit cranky because he decided not to nap that day so he didn't really enjoy the pool.

Monday we had Mya come over for a while during the day to hang out and play with the boys outside.

This week we have not really had much going on. I can't remember if I mentioned before or not, but Ryder ended up at the pediatrician office twice in 1 week last week. In the end he tested positive for strep and they think he also has Lyme Disease because of the textbook rash he had on his face. So he will be on antibiotics for 21 days, I think he has about 10 days left at this point.

Today I received a call from Kennedy Krieger saying they had a cancellation for a full Neuro-Psych Evaluation which was a surprise because we have been on the waiting list for almost 2 years! Of course I took the slot which is on Monday. Thank goodness I have a great cousin! We are going to Annapolis on Sunday to drop Ryder off the play with Jamison while Zak get his 1-on-1 time with Ben & I (long story, Zak said he wanted to throw Ryder in the trash because he wanted mommy & daddy time). So on Sunday evening Christine is going to come home with us and spend the night. Then she will stay at the house with Zak while I take Ryder for the evaluation. Apparently, this evaluation is scheduled for 9am-3pm! It does test a ton of things so I am looking forward to it.

Another piece of news that we are excited about...we decided to join a local pool for the summer! I had called around finding out prices from various local pools only to find out they were all insanely expensive. My last phone call was to a pool in a community about 5 minutes from our house which was just renovated so they had decided to open up membership to people outside of the community in order to help cover the costs. They had a deal that you could get membership for 2011 and 2012 for the price of one season. The pool opens up on June 11 so we are all looking forward to that. There are a few downfalls such as they don't have a baby pool (hoping to renovate it for next season), and all kids 3 & under (even if potty trained) have to wear the swim suit with built-in diaper because the swim diapers (Huggies Little Swimmers) are not allowed. Now I have to order some online because all of the stores are sold out and I have had experience with them not holding poop in as well as the diapers so I will be on edge every time about Ryder pooping in the pool. But we are keeping our mind on the good things, we will have a pool to go to whenever we want!

Is the World Ending?!

2011-05-19T14:10:00.009-04:00

First, I want to start by posting some pictures from the recent trip to Maine that Ben and the boys took. Sounds like they had fun although Ben did have to deal with Ryder's usual tantrums. Ryder went back to school on Tuesday morning so we could try to jump right back into our normal routine.

The cabin they stayed in

Flying kites with Saba

Grammy Rivers with her birthday cake

Table covered in pictures for everyone to look at

Playing in the rain

This was a long paper that wrapped around the walls

Playing the piano

Ben & the boys with Grammy Rivers

(boys' Great-Great-Grandmother)

Saba & the boys with Grammy Rivers

Throwing rocks by the lake

Saba & the boys on ride home

Now on to my title of this post. There is so much crazy talk about the world ending on May 21 which is this Saturday. After the last few days I have had I am thinking there might be some possible truth in it all, not really. It all began when I started using the mail order pharmacy for my prescriptions, what a mess. One of my prescriptions was written correctly, but my insulin one was not. They only wrote it for 1 month supply instead of 3 month supply and then the nurse at the doctor's office got confused and gave the pharmacy inaccurate information. So I ended up paying for 3 months and only get enough for 1 month. I am also not able to refill because according to insurance it is in the system as me having a 3 month supply, ugh! I need a new corrected prescription from the doctor and then the pharmacy will contact my insurance to try and override it so I am able to get the correct amount. Now the doctor is saying he won't give me another prescription because I am supposed to be getting my next one from my new PCP since we moved and I need somebody local. I need to call back tomorrow to explain to the nurse that I need a corrected prescription and not just a new one since it has to come from the doctor who wrote the original one a few weeks ago. So annoying!

Then I have spent all morning calling around looking for a local PCP (primary care physician) only to find out nobody is accepting new patients. I was finally able to find an office that has Family Practice along with Pediatrics in the same office. One of their pediatricians does see patients under 30 years old so they made an appointment for me even though I am already 29. I guess it is better to get into somebody local then go from there. I really just need somebody to help me find a local Endocrinologist along with have somewhere to go when I am sick other than the Urgent Care centers. So I have an appointment for Tuesday morning and hopefully will be able to get my medical records sent to the new location.

And adding to the already crazy morning, I got something unexpected in the mail around lunchtime. We received a refund check from our insurance company. I called and apparently it shows our home owners insurance being cancelled as of July 9. The insurance agent couldn't figure out why because all payments have been made and no other issues showed up so he called the corporate office and put me on a 3-way call. From that person we discovered our policy is in underwriting because it has been listed as vacant! Apparently, we are currently living in a vacant house. The odd thing is that an estimator from the insurance company was just at our house about 6 weeks ago looking at our roof and then we received the check from them to get the roof fixed. The agent is going to contact underwriting on Monday and then get back to me.

Good news, Ben is getting a raise at work...actually 2 of them. He finished a certain amount of training so gets a raise for that and then he is also getting a small % raise for doing good work. Well, last week the correct raise came through for finishing the training. But today his paycheck came through all messed up with a completely random amount which was much less than it should have been. Luckily, Ben talked to his boss and they figured out what happened. His boss just has to clear it up with the accounting person at corporate so hopefully it will be worked out next week on his paycheck!

It just seems like something or someone is out there to get me. So many random things have been going wrong and never seem to be a quick fix or seem to make any sense at all. I sure hope everything gets figured out so I don't run out of insulin, I am able to find a new doctor, house insurance is figured out, and Ben's paycheck is correct next week.

2011-05-15T14:45:00.002-04:00

I spent most of last week getting things packed and ready for the trip to Maine which had become an all guy trip. I was definitely not excited about being left at home, but knew that was what had to happen. On Friday I took the boys to the library for story time and so that I could pick up a few books for myself. They were good at story time and had a good time.

At story time all of the books were about dinosaurs. Their hands-on activity was really fun and the boys loved it. They used homemade dough to make fossils.

Friday afternoon Zak started to misbehave and had a tantrum in his room which results in him breaking his curtain rod...

Friday evening everything hit me pretty hard when it came closer to time for Ben and the boys to leave. I felt myself getting into a really bad mood with a mix of emotions including depression and madness. Ben woke up from his nap at 11pm and we got the last stuff packed into the car. Then we got the boys up and put them into the car. I gave them each a kiss and as I walked away from the car I completely lost it and went into massive tears. It took me a few hours to calm down, but once I heard from Ben that they had made it safely I was in a much better mood. Yesterday I did a ton of stuff around the house along with take a nap and read an entire book from start to end. I was happy when I got to talk to Ben and the boys on the phone last night, but sad because both boys were so tired, crying and just acting out since they were up 2 hours past their bedtime. This morning I talked to them again and things sounds much better. Ben said that this Ryder had said he didn't want daddy and wanted mommy. On the phone Ryder told me he was getting in the car and going to look for me. Today is the party for Ben's great-grandmother and he sent me this picture...

Looks like they are having fun playing in the rain. Today I have been extremely lazy, but have a list of things I plan to do tomorrow.

Trip Update

2011-05-10T07:54:00.003-04:00

The other day Ben got to experience the horrible scream that occurs when a stink bug lands in the car anywhere near the boys. This time it landed on Ryder's side of the car which really set him off into a massive tantrum. It was so bad that days later he is still refusing to willingly get into the car. And once he is in the car he folds his legs up tight, clenches his fists, and shakes. The day of these pictures he refused to put his legs down even after we stopped and got the bug out of the car (it was on the floor).

Ryder fell asleep during dinner the other night. We moved their chairs into the living room so we could all watch the Kentucky Derby during dinner.

I got my new pump in the mail last week, but just started using it yesterday. It is the same size as my old pump, but I figured I would post a few pictures anyways. This time I got a blue one. The big differences are that you can get much better control because this pump can give insulin in much smaller amounts to give a more constant level overall.

I wanted to post some information about our trip to Maine since things have changed. We thought everything was worked out, but then some stuff got messed up and caused us to almost not go. Now it is going to be an all guy trip because I am staying home with the dogs. I am not going to post details about what went wrong, but there is no fixing what happened so I have no choice in the matter for various reasons. So the boys and Ben will be making the drive to Maine and back still. I know the boys are very excited and talk about it non-stop and I will enjoy a little "me" time. I am not excited about being at home with no car, but I know it will be fine. I will keep myself busy and hopefully the boys will have fun.

2011-05-07T21:38:00.004-04:00

Last week the boys and I were on our own again since Ben's work trip was 2 weeks long this time. It was obvious that the boys were missing him by Monday because their behavior took a huge turn for the worse. I have started to really work hard on being consistent with discipline and rewards in order to get a better handle on the out of control behavior and tantrums we are dealing with. Anyways, here are some pictures from our week...

On Monday I took the boys to see the movie Rio which was really cute. They love going to the movies and behaved pretty good that morning. We were the only people in the theater until a few other small groups showed up just as the movie started.

Once we got home their behavior took a dramatic turn downhill though. I pretty much lost my patience with the boys and told them I was going to bag up all of their toys. I had them sit in time out while they watched me put them all in bags and move them all to my bedroom. I told them they would get them back once they showed me they could listen, behave, and act like big kids. I was shocked when this didn't really elicit any type of reaction from them, good or bad. Once I was done Zak even went into Ryder's room and pointed out to me that I forgot to take away the blocks which were in the drawer! They did get all of their toys back, but not for a few days.

The next 2 pictures I find very funny. I was driving home from running some errands with Zak and all of a sudden he started to scream and go crazy which caused me to almost drive off the road. Once we got to a red light I turned around and discovered a stink bug had crawled onto his car seat which set him off. He is not a big fan of bugs so this was definitely an ordeal for him.

The boys like to play around with my shoes. This day they both wore them around for a bit and then Zak tried to tie the shoe laces which was pretty funny.

Ryder came home from school with a very cute Mother's Day gift for me. There was a card with a poem on the front and then a little flower pot with flowers made out of his hand prints.

The boys got a new gift from Grammy (my mom) on Thursday. I will explain the reasoning at the end of the post, but they got a dual screen DVD player for the car. They got to watch a movie while making the drive to pick Ben up from the airport on Friday and loved it.

Today we had lunch with Nanny & Poppy then came home and did some work in the backyard. Ben got the grass mowed which is needed extremely badly. There are still a few holes and lots of mud though which Zak found out the hard way while playing in the yard. The boys have been begging to play in the backyard so we are hoping to get it back into decent condition so that is possible.

Today Ben was shocked at the bad behavior Ryder was showing. He was pretty much misbehaving all day which has become the norm unfortunately. We do have a referral put in by his developmental pediatrician for a behavior therapy program to call and set up an appointment. We also want to talk with them about his bad reactions and anxiety over his weekly infusions which have become a battle as well. So when Ryder got into one of his massive tantrums we had to isolate him into Zak's bedroom (less stuff in there to get into). It took him a while to calm down, but I continually checked on him. One time I discovered he had ruined the blinds! At that point we moved him to his bedroom which is where he finally calmed down.

Now about the DVD player for the car...

A little over a week ago we got an e-mail from Ben's father saying there was going to be a 99th birthday party for his great-grandmother. Ben and I discussed it and decided it was way too short notice and not financially possible for us to make the trip to Maine along with the fact that Ben had just been away for 2 weeks. Then last week Ben called and said he had talked to his dad and changed his mind about going. It did cause some major stress and argument between Ben & I for various reasons. A lot happened in a very short period of time, but in the end it looks like we will be going to Maine. We plan to leave about midnight Friday (May 13) and get to Maine hopefully around lunchtime on Saturday. The party is on Sunday and then we will leave Maine and head home Monday morning which should get us back home very late Monday night. We will be staying in a 1 bedroom cottage (at a motel in Maine) with a full kitchen and plan to try and take most of our food to reduce expenses. Ben's father is going to be helping out with money for gas and some of the cottage expense which will help. The dogs will be staying with Rich & Laura which we know Robin will be extremely excited about because she will get to play with Sam (their dog). I plan to drop the dogs off there sometime during the day on Friday and they will bring them home on Monday. I do not do well with car trips so this whole thing is very stressful for me, but I know it means a lot to Ben. I am hoping the boys will do good with this trip because we know Ryder has some issues with changes in schedule and large groups of people. The plan is for Ben to go back to work Tuesday morning and Ryder to go to school on Tuesday also.

Lots of Pictures to Catch Up With

2011-05-01T19:23:00.009-04:00

Most of the pictures are not in order of how our week went, but I will explain them all. On Monday a few of the families within E Court put together an egg hunt and cook-out lunch for the kids which was fun. I enjoyed getting the chance to talk with some of the other parents while the boys had fun playing.

Dinner at Chick-Fil-A

(not sure which night this was)

Tracy playing with Ryder during his infusion on Saturday morning

We went to the grocery store to pick up some WIC stuff. We had just left the library so went to a store we generally don't go to and when we walked in the boys immediately spotted these!

Zak taking a nap in my bed

Ryder liked this chair in the bathroom at WalMart

Enjoying some nice weather

Zak riding the bull at WalMart

Zak riding his scooter around the community

The following pictures are from Saturday when Tracy & Kyle were over at the house. The weather was nice so after Ryder's infusion we all went out for a walk and to the playground for a bit.
This morning we went to Annapolis to spend the day with Colleen and the kids. The boys were so excited and has so much fun! We played in the yard, walked around downtown for a bit, and walked around the art festival as well. We got to see Natalie, Christine and Oompa as well. Ryder fell asleep very quickly once we got in the car and headed home, but Zak took longer and didn't fall asleep until just before we got home.

My plan for tomorrow is to make some calls to figure out plans for school for the boys next year. Some budget cuts have caused the county to cut out the co-taught class Ryder was supposed to be in. So now we need to figure out if our income will qualify both boys for the regular preschool program and if we want Ryder to stay in the Early Intervention class or move on to the regular class. Once I hopefully get some answers I plan to take the boys to the movies and see Rio.

Easter Sunday...Lots of Pictures

2011-04-24T21:29:00.005-04:00

This morning started out a little rough with early wake up call from the boys which then led to cranky boys. We went downstairs and they got to see their Easter baskets. After seeing everything they got their moods were a little better.

Movies

(Tangled, Shrek Ever After, How To Train Your Dragon, Beauty & the Beast)

Booster packs for Alphie the Learning Robot

Mini Basketball Hoops

Zak then spent some time in his bedroom screaming and throwing a tantrum because he was not listening or behaving and time out was not working. Once he calmed down he came back downstairs and Ben took them outside to play with their new Frisbees. After lunch the boys laid down with Ben to watch a movie while I went to the grocery store. Early afternoon Tracy & Kyle came over to hang out and have dinner. We had an egg hunt in our backyard which all three boys thought was fun...

Once inside we opened all of the eggs to see what was inside. The boys happily discovered Nerds, Sweet Tarts, mini Tootsie Rolls, Smarties, Ring Pops, and socks. Kyle had fun playing with the little tiny eggs and enjoyed the rattling noise of the Nerds. So we filled one of the little eggs with rice for him to use as a shaker which he loved. He also had fun looking at all of the stuff the boys had gotten.

We then all sat down at the table to enjoy our cheese fondue! Kyle started out with some Cheerios, but quickly enjoyed some of the bread, apple, and sausage as well.

The boys had so much fun playing with Kyle and Kyle also enjoyed it. Zak was crawling around on the floor with Kyle chasing him, it was very cute! Batman loved giving Kyle kisses and once Kyle got used to Robin he enjoyed getting kisses from her as well. We had a good day hanging out with Tracy & Kyle.

Throughout the day Ben was also doing laundry and we were both getting stuff done around the house in order to prepare for his 2 week work trip which he leaves for tomorrow morning. He will be gone until May 6 which will be hard, but we will take it one day at a time and hope it goes smoothly. Tomorrow we have an egg hunt in the neighborhood, Ryder has school Tuesday/Wednesday/Thursday, and Zak has his Immunology appointment Friday morning. On Saturday morning Tracy is coming over to help me with Ryder's infusion which I hope goes smoothly. And then Sunday we are going to hang out in Annapolis with Colleen and the kids.

Hubers Farm Egg Hunt

2011-04-23T21:50:00.000-04:00

On Saturday we took the boys to a local farm for their Easter Egg Hunt and other activities. They loved seeing the bunny, playing bean bag toss, and jumping on the moon bounce.

They both had a blast during the actual egg hunt. At first they said there was a 10 egg limit per child, but since not many people showed up due to the possible rainy weather they allowed kids to pick up whatever they wanted. A few minutes after the hunt started it did begin to rain so many people left, but we stuck around so the boys made out great with tons of eggs!

In one of Zak's eggs he had a note saying he had won a cupcake. So of course I had to buy extra ones for everyone else.

Easter Bunny

2011-04-22T22:19:00.000-04:00

The boys and I went to Arundel Mills for lunch and then walked around a bit. We then met Tracy, Dave, and Kyle to see the Easter Bunny. Kyle was very scared of the bunny and in tears for his picture, but the boys loved him. After seeing the bunny we walked around the mall for a while with them. The boys and Kyle had a lot of fun together.

Hair Cuts

2011-04-18T22:07:00.001-04:00

The boys both really needed hair cuts. Ryder had started to complain that he felt his hair in his eyes so I figured it was time. It has been about 3 months since their last hair cut. Here are the before and after pictures. They always look so much more grown up after getting their hair cut.

Videos

2011-04-14T16:51:00.002-04:00

Boys singing Alphabet

Ryder singing Row Row Row Your Boat

Zak singing condensed version of Itsy Bitsy Spider

Ryder singing "mommy song"

(aka Barney song)

Ben spinning Zak around and then Ben falling over

Zak making fun of Ben for falling over

Some Stuff

2011-04-14T16:27:00.004-04:00

I have a few pictures I want to share....

Boys playing with Digital Art Studio

Backpack Zak colored

Zak's newest sleeping habit

(he told us to put his bed in the trash!)

Ryder sleeping

Robin

This afternoon once Ryder got home from school we took a trip to the playground with Nanny & Haleigh. I find it funny that the boys still fit in the baby swing together!

The last few weeks Ryder has had a pretty bad dry cough along with a runny nose. We have seen the pediatrician many times as well as the nurse practitioner at his school and they have all said he is battling with allergies. Today I talked to the Immunologist who pulled up Ryder's most recent blood work and then she explained to me that his IgE blood levels are way too low for his body to be able to produce an allergic reaction to pretty much anything. So she said he is most likely experiencing Non-Allergic Rhinitis. She suggested talking to the pediatrician about getting a steroid nasal spray for Ryder to see if that helps at all. So today I talked with the pediatrician and we picked up a prescription for Nasonex which we will start tomorrow. I am hoping this will help!

Better Late Than Never

2011-04-11T09:58:00.009-04:00

We went to the Cherry Blossom Festival on Saturday April 2 and I just haven't had the chance to post pictures until now. I took over 200 pictures so it was hard picking which ones to post! We went with Laura and Haleigh. We left their house in the early afternoon and took the Metro to DC. The boys had a great time walking around and looking at everything. We also got to see some fireworks just before getting on the Metro to head home. It was a long day because we didn't get home until about 11pm. It had rained all morning, but ended up being a great day.

Zak in the tree

Ryder in the tree

Haleigh in the tree

Ben & Zak

Picnic dinner

The boys chasing Nanny

Ryder & Haleigh sharing the stroller

Zak with Lincoln

(Ryder was scared to death of the "big man" and wouldn't go near him)

They loved walking down the steps

Ceiling of Jefferson Memorial

Only reason Ryder is in this picture with "big man"

is because he was strapped in the stroller

Genetics Update

2011-04-05T15:03:00.003-04:00

Yesterday Ryder had a follow-up appointment with his Genecticist, Dr.Hamosh, at Johns Hopkins. We discussed his progress over the last 11 months along with all of his new health things and other concerns.

Then we discussed the information on the amended lab report. In addition to his extra 'X' chromosome (Klinefelter Syndrome) he also has a specific partial deletion which is known as 15q11.2 BP1-BP2. This deletion has been associated with things such as speech and motor delays, behavior issues, dysmorphic features, sleep issues, seizures, and Autism. The geneticist then went on to say they want to test Ben, myself, and Zak to see if any of us have this exact deletion as well. Apparently, if it runs in families than it can be considered a "normal variation" and be benign. Ryder has most of the things that are associated with this specific deletion, but if we find it runs in our family then the geneticist said she will continue to looking for other possible answers. She is 99% sure that Ryder has more going on than just the Klinefelter Syndrome.

During her physical exam of Ryder she talked about Ryder's hypospadias. He did have the surgery to correct the hypospadias and chordee, but she feels the hypospadias is not fully fixed. About a year ago we took Ryder for a second opinion to a Pediatric Urologist at Hopkins. He took a look and said he could see room for improvement, but would wait until potty training happened. If Ryder had no issues then he would suggest to leave it alone. Now that Ryder is starting to pee on the potty we are noticing some issues such as he pees behind him when sitting down so that is not a horrible thing, but not correct. And he is unable to stand up and pee because his micro-penis (that is a medical term) and the hypospadias combined make it impossible to aim and get into the toilet. So today I called and got Ryder an appointment with the Pediatric Urologist at Hopkins on April 13 to discuss the matter again. As much as I would like to avoid another surgery for Ryder, I just think he would benefit from it. I will update once I know anything else.

Onto a different topic...today I took the boys to the pediatrician and they both have pink eye. They will need eye drops in each eye 3 times a day for 7 days. When we got home I gave it a try on my own and was completely surprised by how well Zak did. On the other hand, I was absolutely not surprised by how horrible Ryder did. I am not sure I even got any in his eyes! I was told they would not be contagious once the gunk is gone and that generally takes 24 hours or so after starting the eye drops. So Ryder will definitely be staying home from school again tomorrow.

Abnormal Rhythm

2011-03-26T09:12:00.004-04:00

Yesterday was a very long day filled with many unexpected things so I will start at the beginning. On Friday I had a headache all day long and by the afternoon my throat was killing me and I just didn't feel well. I went to bed around 8pm and was asleep a little after 11pm, but woke up at 1am with an extremely upset stomach and a fever with chills. Finally, I was able to get to sleep for about an hour before Ben had to leave for work.

I decided to get the boys and myself dressed then head to Express Care to checked out because if I had the Flu I was hoping to get Tamiflu to help get rid of it sooner. They did a Flu test and Strep test which both came back negative. The doctor did the normal physical exam, but when she listened to my breathing she paused and listened to my heart for a while. Then she asked if anybody had ever told me I had an abnormal heart beat rhythm. I told her nobody had ever told me that and it should have been caught with all of the doctors appointments and surgeries I have had in the past. She wanted to do an EKG just to check my rhythm, but she said it could be nothing. So they got it all set up, the test started but then the machine died after capturing 4 heart beats. We waited around while they tried to fix it, but nothing worked. At that point we had been there for almost 2 hours so the boys were getting cranky. The doctor then came back and said she was sending me to the ER because the 4 heart beats they did get very abnormal so she wanted it to get checked out more in-depth. They handed my a copy of my chart with instructions to go directly to the ER.

The boys and I went to the car and I freaked out because I was not going to the ER alone with the boys. After making some calls we had a plan. I drove to Rich & Laura's house and met Ben there (he was working in DC). The boys stayed there while Ben and I went to the ER at Anne Arundel Medical Center. I got checked in very quickly and taken straight back to the EKG room. Once the test was done they put me directly into a room in the ER. The nurse got me all hooked up and at that point my heart rate was 140 and I was showing an abnormal rhythm on the monitor. The doctor eventually came in to examine me and look over my EKG and what not. He explained that my heart rate was way too high (normal 60-100), that I had something called Bigeminy PVC rhythm(every other heart beat was an abnormal one called a PVC), and when listening to my heart beat with a stethoscope it was skipping beats. My blood pressure was completely normal along with my respiratory rate being normal. He said since I was not having any other symptoms such as pain, dizziness, or passing out that these could all be fine as long as there was no underlying heart issues. He ordered some basic blood work along with all of the cardiac enzyme blood work. He explained that if a person has any type of heart muscle breakdown (such as heart attack) it releases enzymes into the blood stream and that is what the cardiac enzyme testing would look for. He said it was to rule out a silent heart attack. Then he said once the blood work was back they might need to do some x-rays, but in the meantime he wanted me to get an IV with fluids because I was slightly dehydrated.

The blood work took about an hour or so to come back. During that time the nurses and doctors had all switched so now I had a new nurse and new doctor. Of course, the new doctor came to my room just as I had left the room to go to the bathroom (the fluids were definitely working!). So we waited around for a while longer until the doctor came back. When she did come in the room she commented that my heart rate was still too high, but had at least come down to 120. She asked how I felt and I told her I was feeling the same, sore throat, headache and upset stomach. I also said that with everyone asking me if I had chest pain I had started to think I was, but not really sure since I thought maybe I should be having chest pain and she laughed. She said all of the blood work came back completely normal and she could discharge me. Ben and I were finally in the car heading to dinner at 6:15pm. The day started out at Express Care in Bel Air at 9:15am and ended leaving the ER in Annapolis at 6:15pm....what a long, stressful and tiring day!

We went and had dinner with Rich, Laura, Haleigh and the boys. Before going to the ER Zak had picked up on stuff going on because he was saying things like "Mommy go to hospital for doctor to give her heart a band aid and feel better." so I wanted him to see that I was fine (the boys were going to spend the night at their house). When Zak saw me he said "Doctor make you feel better and give you band aid?" which was very cute.

I am relieved to know I didn't have a heart attack, but I am now paranoid and worried as to why all of a sudden my heart is skipping beats, my heart rate is so fast, and I have this Bigeminy rhythm. I have been talking for a few months about going to my doctor and asking them to check my thyroid because I have been experiencing somethings that could be a sign of Hyperthyroidism. Also, my mom has had thyroid issues forever (she had Grave's Disease) which tends to run in families as well as thyroid issues being common for Diabetics. One of the possible signs of Hyperthyroidism is a fast heart and PVCs. So I plan to get that done as soon as possible. The other reason I am scared is because I couldn't tell my heart rate was that fast even though it is odd because when I had worked out at the gym when I got my heart rate up into the 140s while running I could definitely feel it racing and I can't feel my heart skipping beats either. So now it makes me paranoid that I won't notice if something else changes.

Spring, Super Moon & Record High Temperature

2011-03-21T08:44:00.010-04:00

I am going to do this a little out of order, but that is ok. First, the boys have both been battling some nasty diarrhea the last few days. Because of this Ryder won't be able to go to school tomorrow since he has to be diarrhea (vomit and fever as well) free for at least 24 hours before going back to school. So we are starting a strict BRAT diet for them, giving Probiotics, avoiding all lactose, and giving them Pepto. I hope this ends soon because Ryder is experiencing the worst diaper rash right now.

On Sunday we enjoyed our free Rita's Italian Ice to celebrate the first day of Spring. The boys picked their flavor according to the color...Ryder got Blueberry because he wanted blue and Zak got Mango because he wanted orange. I got sugar-free pink lemonade and Ben got wild cherry. It was chilly out so Ben is the only one who actually finished his whole cup, but we all enjoyed it.

On Friday we actually set a new record high temperature! It was 81 degrees and the old record was 80. It was so nice outside. We had planned to take the boys to the playground when Ben got home from work since he left early and would get home early, this is his one day a month he knows this because he has this same job every third Friday of the month. Well, it was not meant to be this month because just as we were getting ready to leave Ben's boss called and said he had to go back to work because the other tech had gotten behind. The boys threw a massive tantrum and just lost their minds, rolling around the floor screaming they needed daddy. It was a disaster. I kept telling them we could still go to the playground, but they didn't want to. Finally I got them calmed down and we went to the playground. They both had a blast! It was not a perfect trip though because about 5 minutes after we got there Zak had to go to the bathroom and we quickly found out they were still closed at the playground...the sign said closed through March. So we had to get in the car and drive to a public bathroom then went back. About 45 minutes later I was sitting with Ryder in one of the tunnels and his nose started to bleed so we had to get to the car and deal with that and then headed home.

After we got home the boys played outside for a while. They each took a turn with Zak's roller skates and then played on their scooters also. Ben did get home while we were playing outside.

Then we went inside and made dinner which included bacon and pancakes. The boys have to have their pancakes in the shape of Mickey.

On Saturday night we had what they called a Super Moon because Earth was the closest to the moon that we have been in like 18 years so it was bigger and brighter than normal. I tried to get a few good pictures...

Tree Cutting

2011-03-18T12:20:00.006-04:00

Yesterday afternoon we had some visitors at the house. Nanny, Poppy, Dani, Haleigh, and Sam all came over. Sam had fun playing with Robin and the kids all had fun playing together. Rich came to help Ben cut down the tree in our front yard. We wanted to cut it down for many reasons and the HOA said we could do it.

There were a few times that I had to look away because I just didn't like what I saw. Ben and Rich both seemed to have fun with the whole thing and in the end nothing was damaged and nobody got hurt! Some of the craziest moments included the ladder sinking into the muddy ground causing it to sit at awkward angles until they decided to put a piece of wood under it and then bringing down the biggest branch which fall within inches of the neighbors motorcycle (they moved their cars, but the husband wasn't home to move the motorcycle).

I am glad to have it down now although all of the kids in the court were upset and repeatedly asking why we did it because they would all climb on it (one of the reasons we wanted it gone). We also need a new roof and the roof person told us we would have to get rid of at least the top half of the tree in order for them to get to the roof and do the work.

4-Wheeling with Poppy

2011-03-14T18:15:00.009-04:00

On Friday I took the boys to story time at the library. As always, Zak loved it and had a good time. This time I was very surprised with how well Ryder did. Normally he wants to sit on my lap the whole time and not participate at all, but this time he sat next to Zak and danced and sang with all of the other kids. They did books all about the circus, had an animal parade, and got to try on some clown stuff.

Saturday morning Ben and the boys left the house at 6:45am to head to Green Ridge and go 4-wheeling with Rich (aka Poppy). They had a blast! The three of them didn't get home until around 8pm on Saturday night.

While the boys were away for the day I was busy at home getting stuff done. I got an oil change done for the car, went to the grocery store, got tons of laundry done and put away, cleaned up the house, finished going through clothes and a bunch of other random things. Then I went to dinner with Mandy and Mya which was so much fun. We used to hang out all the time in high school and it was so good to be able to hang out for an evening. They were still at the house when the boys got home which the boys thought was very neat. Zak continually said "mommy you have friends at my house"!

On Sunday morning we did Ryder's infusion which went pretty good. No major issues, but he did seem to have a lot of pain the whole day which is not always the case. After his infusion we went to drop off Laura's car to her since Ben had borrowed it to. Then we went to the store to look at paint colors for the boys' bedrooms. For the boys' birthday gift this year my mom is going to pay to have us paint their rooms. She knows that they have so much stuff and don't really need anything so she figured they would like having their rooms painted and getting to pick the color. I figured Ben would choose some colors and then let the boys pick from those, but instead he just told them to pick a color. We did say no to a few extremely dark colors that we really didn't like. So the colors they have chosen...

Zak chose Gamma Sector Green

(Disney colors by Behr)

Ryder picked Orange Blast

(Disney colors by Behr)

Stuff

2011-03-09T13:16:00.007-05:00

On Thursday night I ended up taking Zak to an after-hours doctor because his pediatrician was all booked up and he just sounded worse than before. He was having horrible coughing fits and the sinus stuff didn't seem any better either. The doctor there checked him over and decided he still had a decent sinus infection going on along with croup. So he put Zak on oral steroids for 3 days and another round of Zithromax. He is no longer having the bad coughing fits, but he is still coughing a decent amount. Most of the sinus issues seem better other than a constant runny nose. I think I might give the pediatrician a call to see if this could be the start to allergy issues and if we should start giving the boys Zyrtec again. Ryder is doing great and just has a cough here and there and a slightly runny nose at times.

We went on a search for a new vacuum because ours was has not been working for a while now and the floors were getting really bad. After looking at a few stores I realized vacuums are ridiculously priced, way too heavy, and the perfect one just doesn't exist. So I let Zak pick out our new vacuum....he calls it "green super backroom"...for some reason when he says vacuum it sounds just like "backroom", kind of cute. The boys love this vacuum because it has different height adjustments for the handle and when it is all the way down on the lowest setting it is the perfect size for them!

On Sunday we made the drive to York, PA to visit with Ben's grandmother and Aunt who were in town visiting from NH. We met at their hotel and went swimming for a while. Zak got pretty used to the water fairly quickly and was off on his own and jumping in having fun with Jade. Ryder was not happy about being in the water which really surprised us because at the end of last summer he was also jumping in and swimming on his own. After many attempts of forcing him into the water he did finally relax a little bit. After we all got dry and changed we then went to lunch. In the early afternoon we made the drive home.

On Monday the boys went to their first sports class at the YMCA together. It is a class Zak did a few sessions ago, but we thought it would be great for Ryder also. They played soccer and did pretty good. Ryder didn't like hitting the ball with his head and he didn't really understand playing an actual game at the end. At one point during the game when they were all chasing the soccer ball Ryder got to it first, picked it up, and handed it to one of the other kids then ran off. All of the other parents thought it was cute and I just reminded Ryder that he can't use his hands in soccer. Maybe he would be a good goalie?! They both had fun though!

Now for pictures....

Both boys sitting waiting for their turns

Ryder in red, Zak in orange

Zak playing with the chalkboard at the after-hours place

Zak with his new vacuum

Ryder vacuuming

Zak swimming

Ryder was not happy

Zak had just jumped into the pool right in front of Ben

Ryder a little more relaxed

Zak, Ryder & Jade

Zak in his Buzz Lightyear towel

Ryder in his Woody towel

Today after lunch I spent about an hour with the boys trying on shorts from last year to see if anything still fit them and what we needed to buy for this year. Much to my surprise I only had to get rid of a few pairs and there were still some that were too big which they never wore last year. I have some little boys because all of the shorts that they tried on today that fit were 18-24 months! I am glad to know we are set for shorts this summer so I will really only need to look for tank tops at the Moms of Multiples Spring sale with is April 2.

IEP Meeting and Other Stuff

2011-03-01T21:08:00.006-05:00

I have a good amount of things to talk about and I wanted to post some pictures. Things will be a little out of order because of the way I uploaded pictures.

The boys have been waking up early in the morning, before Ben's alarm even goes off, and we think it is from so much light in their room from the sun. They have a bad history of breaking blinds and pulling down curtains unfortunately. They also no longer nap and won't even lay down to rest anymore and we once again think it has a little to do with too much light in the room. The other day Zak got a little too crazy in his room and created a hole in his wall! After that we decided we needed to try something to block the light out. We talked with the boys and told them they are big boys and need to behave and not play with their new blinds. So, we put up room darkening blinds which seem to do a good job of blocking the sunlight. Here is a picture of the hole in Zak's wall along with a picture of Ryder carrying his new blinds in the store...

Next, I want to do a health update about the boys. On Thursday I kept Ryder home from school and ended up at the pediatrician with both boys for some really bad coughing and congestion. The pediatrician checked them both out. Zak ended up having a sinus infection which is probably still lingering from the one he had at the beginning of February. She said his lungs were clear which is good. They put him on Zithromax hoping it would kick out the infection since the Omnicef didn't before. Then she looked over Ryder and said his lungs sounded junky. Ryder had pneumonia along with possible strep throat (didn't test since she was going to treat him for the lungs anyway). So he ended up on Zithromax and Orapred. Ryder is sounding a lot better and seems to be acting much better as well. Zak's cough seems to be lingering and possibly worse so we will keep a close eye on it. I am keeping a journal for both boys to track infections, illnesses, antibiotics, and anything else health related to show the Immunologist.

Now I want to share some random pictures from the last few days...

Ryder in the shopping cart at Target today

Ready for baseball

Ryder gets a backpack sent home with him each week filled with activities to do at home. This week his backpack is all about writing. Here are a few of the things he worked on with Ben the other day along with a few of Zak.

awesome face!

VZ got in the cage with Robin

Zak tracing the monster

using the proper grip on the pen, a new emerging skill!

This morning Ben went to school with Ryder to observe him. I was shocked at how different Ryder is at school and wanted Ben to get the chance to see this as well. I then met him at the school for Ryder's IEP meeting at 11am. Once I got there Ryder's teacher told me that Ryder was very quiet and did not participate in much this morning with Ben there. Ben then explained to the teacher that what she saw today in school was just about how he is at home. She was happy to get to see the other side of Ryder, but also baffled just as we are!

The IEP meeting went well which is always a good thing. He will no longer be receiving OT sessions which I am not happy about, but nothing much we can do about it. He has achieved his OT goals in school even though at home he is not doing well with the feeding aspect. The OT talked with us for a while giving us helpful ideas and suggestions. She also said I can e-mail her anytime. I do have Ryder on a waiting list to have an OT evaluation done by a private therapist so hopefully that might get us some more useful information. The speech therapist went over her current evaluations which we pretty much agree with. He will continue to receive two 30-minute speech sessions per week to work towards his new goals for expressive and receptive language. The special ed teacher then went over her current evaluations which show him to be at age level for most everything. We did voice our concerns about a few skills so she will continue to work on those and observe how he does in school with them. She did find him to be at a 2-month level for self-help skills as well as being delayed for social skills still. He will continue going to the special ed pre-k three mornings a week to work on his goals in those areas as well. The school nurse was also at the meeting because she prepared a Health Care Plan to attach to Ryder's IEP which outlines guidelines and needs for Ryder regarding his CVID. We will end up adding actual goals to his IEP once he is in elementary school. They then went on to discuss Extended School Year (ESY) which is services that occur over the summer. Th teacher went over the guidelines and felt Ryder didn't qualify for it, but then asked how we felt. I voiced my concerns about how he shows such a large gap between skills at school and at home. I explained that I was worried he would regress over the summer with no therapy and start back at square one once school started, I also said I would be looking into private therapy for the summer because of this. I was surprised how quickly the speech therapist spoke up and offered speech services for ESY. She set it all up so Ryder will receive two 30-minute sessions per week during the ESY time. I am so excited about this!

Ben and I decided to start with many of the ideas the OT gave us for Ryder's feeding at home. He eats so well at school so we plan to bring some of those skills home! In school he usually eats out of a cup using a spoon or fork because it helps the food move around less. So we went to Target and bought some small bowls to try out along with some divided dishes with high walls. I know it will look strange and probably complicate things for a while, but we are hoping allowing him to eat out of these small bowls will help give him confidence using a spoon and fork. Once he has mastered this we will start to move back to regular plates. We are willing to try anything in order to get meal times less stressful and more successful!

Pictures and Videos

2011-02-22T08:34:00.007-05:00

I figured out the picture storage issue by paying for additional space. Here are a bunch of pictures and two videos from the last few weeks...

Zak with his monkey

I decided to organize all of our medications and put them in one place

The boys helping me clean

Jamison had his birthday party at a bounce house place and the boys had a blast

On Friday last week it was 70 degrees so we went to the playground

(as did a million other people)

Riding scooters when we got home

Ryder during his infusion this past Saturday

Playing with their ninja fighters

This is a video of Ryder drinking some root beer during the Super Bowl.

Here is a video of Zak talking about his new monkey...yes, he named him "Hecka Hecka"

Family Update

2011-02-21T13:38:00.004-05:00

I know I have not posted anything for a while. We are still here though. I just tried to make a post with lots of pictures, but apparently I have used up my 1 GB of memory space for pictures! Now I have to look into deleting old pictures or paying for some extra storage. For now I will post an update without pictures...

Ben- On Tuesday (last week) he cut his thumb while at work using his pocket knife to cut a zip tie. Definitely not the brightest idea ever and he will admit to that! He ended up spending time at an urgent care place. In the end he got 2 internal stitches and 6 external stitches. He will get the stitches taken out on Friday this week. I am trying to convince him he shouldn't play volleyball tonight, but as of now he is convinced it will be fine.

April- Not much to report about me. I have been busy with doctors and school stuff for the boys. I have been feeling exhausted and run down recently and would love to have some "me" time soon. I admit to having some jealousy of Ben getting to go to work each day and have adult interaction along with a break from the boys once and a while. I love staying home with them and wouldn't change that at all, but it would be nice to get away alone once and a while. I have been dealing with some pain in my right hand, wrist and arm which I think is Carpal Tunnel.

Zak- He is completely daytime potty trained which is awesome. He still wears a diaper overnight and tends to wake up drenched every morning, but that is fine. He did have some blood work done to check his antibody levels by the Immunologist since the CVID Ryder has is known to be a genetic thing. I got a call from the Nurse Practitioner saying they had his results and he shows no antibodies to the Prevnar vaccine either. We are going to the pediatrician on Wednesday to get him a booster shot for Prevnar as well as getting him the flu shot. Then we will do more blood work 4 weeks later and have an appointment with the Immunologist scheduled for April 29. I am hoping he will respond well to the booster and that his overall immune system is functioning better than Ryder's, so fingers crossed.

Ryder- Things have been busy with Ryder recently. We have now done 3 infusions at home and run into plenty of problems. The first infusion at home went great, although slow. The second infusion was a nightmare because half of the Hizentra leaked out and then I couldn't get the rest to infuse at all. This last infusion started out badly with a little bit leaking out, but I took the needle out and re-inserted it which led to the rest of the Hizentra to infuse quickly. I now know exactly how to insert the needle and tape it down so it doesn't leak and hopefully it will infuse as quickly as it is supposed to. On Friday we are pretty confident that Ryder had a seizure. After the episode ended I called the pediatrician who sent us to Radiology to have some x-rays done to make sure he didn't aspirate anything into his lungs (he threw up) which all came back normal. We don't think it was an allergic reaction because he snapped out of it fairly quickly with no medication. I talked with the Nurse Practitioner from Immunology this morning and she feels it definitely sounds like a seizure, but is confident it doesn't have to do with the Hizentra since it had been 6 days since his last infusion. She said there have been documented cases of seizures occurring, but always within 1-2 days of an infusion. I ten e-mailed the Geneticist to see if she feels we should see a Neurologist. Speaking of the Geneticist, I got a call from the genetic counselor last week. She wanted to schedule a follow-up visit for April 4 to discuss some new findings. Apparently, the lab who did blood work 2 years ago sent a new report stating there were new findings in his blood work. It shows that in addition to the extra 'x' chromosome he has a partial deletion on Chromosome 15. The genetic counselor explained in recent studies it has shown kid's with this deletion have significant developmental delays, but deletions on Chromosome 15 are also linked with several specific disorders as well. So we will go on April 4 to discuss it in-depth with Dr.Hamosh. Also, we have Ryder's IEP Meeting scheduled for March 1, as long as it doesn't snow once again since this meeting has already been cancelled twice due to snow closing the schools.

First At-Home Infusion

2011-02-05T22:59:00.006-05:00

First, I wanted to share a cute picture from tonight. The animals seem to have taken over our bed. Tonight Robin decided to use VZ as a pillow and VZ didn't seem to care at all!

This morning I took Ryder to his gymnastics class and Ben stayed home with Zak because he still has a pretty nasty cough. When we got home I put the EMLA cream on Ryder in preparation for his infusion. This time we didn't use the Tegaderm because pulling it off seemed to really upset Ryder last week. After talking to other parents online I got a bunch of new ideas on what to use so we tried some out today. We put the EMLA cream on, covered it with a piece of plastic baggie I cut, and then wrapped SelfGrip Elastic Bandage around his tummy to hold it on. Zak felt left out so we put some regular lotion on his tummy.

After the cream was applied we made a trip to BJs for a few things. The cream needs to stay on for at least 1 hour before the infusion so it worked out perfectly. Once we got back home I got everything set up and ready to go. This is a picture of the pump all set up with the Hizentra and tubing in place.

I took of the elastic bandage and wiped off the cream. Then I had him lay down on the couch so I could clean the infusion site and put the needle in. He was fairly calm since we didn't have to rip off the Tegaderm this time. He laid there whining a little bit and eating a cracker while I placed the needle. I did still use the Tegaderm over the needle because we need to make sure it stays securely in place. Then we wrapped the bandage around him once again.

The other day Zak & I bought some prizes and made a prize bin for infusion time. I told Zak if he behaved and helped keep Ryder calm during the infusion he would also get to pick something out of the prize bin. Today they picked out a whale, a starfish, a dolphin, and a crab to play with and that seemed to keep them pretty entertained.

The actual infusion took longer this time, but I had been told that many factors can effect how quickly the infusion goes. Last week it took about 15-20 minutes and this time it took about 40 minutes. I think the main factor is that the warmer the infusion site the quicker it goes. Our house is cooler than the clinic and he didn't wear his shirt for most of this infusion. After the infusion was done we took the bandage off and I snapped a quick picture of the needle...

Taking out the needle seems to be the worst part in Ryder's mind. He whines about it and tries to talk us out of taking it out, but we didn't put up too much of a fight. Zak was standing with him telling him it was ok, was pretty cute to watch. We know that taking the needle out does hurt more than putting it in because his skin is numb when putting the needle in (from the EMLA cream) and when taking it out the infusion site is extremely swollen. After taking the needle out Ryder got one of his special band-aids he picked out at the store the other day...Toy Story of course.

The next two pictures are trying to show just how swollen the infusion site is right after the infusion is done. Once his body gets used to the process this swelling will go away within hours, some people say they don't even get the lump at all after a while. Last week it took Ryder 3 days to completely get rid of the swelling and pain.

This week I decided to give Ryder Tylenol during the infusion in hopes that it would help alleviate pain from the swelling after the infusion. It seemed to work wonders because he hasn't really complained about pain at all. During the actual infusion he did grab at his site a few times, but the rest of the day he has be! Overall, this week went much better than last week in the clinic and I hope it continues to go well!

Pictures

2011-02-04T13:35:00.007-05:00

Things have been busy around here so I have not had the chance to sit down and post. I have a ton of pictures from our last snow storm to post so here they are...

Ryder

Zak

They were chasing me with snowballs!

Making a snowman

Making snow angel

The boys and I

On Monday Ben left for VA for the week for work. The boys and I had lunch with Nanny, Poppy, and Haleigh. Zak had a sleepover with Nanny & Poppy on Monday night because I was supposed to have Ryder's re-scheduled IEP Meeting on Tuesday morning. However, it was once again cancelled since schools were closed because of ice. Ryder and I hung out together all day and Zak came home Tuesday evening. Ryder had school on Wednesday, but not on Thursday because once again school was 2 hour delayed. Thursday during the day I dropped Ryder off to Nanny & Poppy for a sleepover. Ben got home from VA last night so that was good.

Today we got our first shipment of Ryder's infusion supplies. They sent us enough for 1 month which is good. I thought we were going to get supplies for 6 months at a time which would be a ton of stuff to store so this is much easier to handle. I let Zak decorate the storage thing with stickers and then I put everything away.

Prep stuff, EpiPen, Journal

Gloves, alcohol wipes, Bio-Hazard container

Needles, tubing, and what not

My insulin pump supplies

Zak had fun playing in the box

Tomorrow the boys have their gymnastics class and then we have to do Ryder's infusion. Other than that we don't really have any plans. Earlier this week I took Zak to the pediatrician because he has a bad cough so he is on antibiotics for a sinus infection and some junky lung stuff. Depending on how he sounds and feels tomorrow he might have to skip the class.

First Hizentra Treatment

2011-01-28T12:57:00.002-05:00

This morning Ryder, Ben and I headed out the door around 7:15am. Ben took his truck to work and I picked him up in our car. We then made our way to Hopkins and got there by about 8am. We got checked in and quickly taken to the back. I love having appointments first thing in the morning because it is empty and usually they are not running behind!

Just before leaving I out some EMLA cream (topical anesthetic) on Ryder's side and covered it with some Tegaderm (clear dressing to go over IVs and wounds). Once we got into the exam room the Nurse Practitioner (Beth Younger) brought in a big box. Ryder got excited because he was convinced it was full of toys for him. She pulled out the pump and let Ryder play with it because it is pretty durable. She showed Ben and I all of the supplies and gave us more information on the Hizentra. Then she walked us through the steps to set up the infusion. It seems pretty simple to me because it is fairly similar to getting my insulin pump set up.

We then put Ryder on the exam table so we could get started. As soon as we lifted up his shirt he pretty much went crazy screaming, crying, and arching trying to get away from us. He really flipped out when we pulled off the Tegaderm. Ben was standing by his head and holding him arms while talking to him. The Nurse Practitioner and I were standing by his feet/stomach so she could walk me through how to get the infusion started. I took the needle and quickly pushed it in and Ryder hit the ceiling. I felt really bad, but we quickly got a piece of Tegaderm on top of the needle and let him sit up. He was pretty upset, but once we got the infusion going he got to sit at the computer and play games. At that point he pretty much forgot about the infusion and was a happy guy. The infusion only took about 15-20 minutes. Once it was time to take the needle out he freaked out again and didn't want anybody to touch him. The Nurse Practitioner showed me to just quickly pull the Tegaderm and the needle would come with it and it was over.

I know I will be able to do the infusions at home because I will do anything needed for Ryder (or Zak). I will need Ben to help me hold him down until he gets more used to the whole process, but the Nurse Practitioner told me that kids will get used to it and I do believe that. He didn't have any reactions to the Hizentra other than swelling and redness at the injection site which is completely normal and will get less and less as his body gets used to the Hizentra.

During the infusion I talked with the Nurse Practitioner to get some questions answered which was really nice. After it all kind of settled in I had come up with a few questions so we went over them. Some things we discussed included...

1) Side Effects: She said that most of the people who have side effects are receiving the Immunoglobulins through IV and then get switched to the subcutaneous and no longer have issues. She explained the local injection site side effects are normal.

2) Need for Future Vaccines: She explained to me that since the Hizentra is an actual blood product it contains all of the antibodies from those who donated the blood. Because of this the Hizentra includes all types of antibodies so he will no longer need to get any vaccines while getting these treatments. She also advised me that he needs to definitely stay away from ALL live vaccines even when not on the treatments. This could definitely explain Ryder's pretty big reaction to some of his earlier vaccines. The reason he needed to flu shot this year is because the Hizentra he is receiving came from donated blood from 2 years ago (that is how long the whole process takes from donation to injecting the product) so there are no antibodies for H1N1 in. Because of this they are requiring their patients to get the flu shot this year, but in future years he will not need it. We also learned that he should avoid having contact with people who have recently received any live vaccines (glad we chose to keep him home from school the day they administered the FluMist!).

3) Actual Diagnosis: I asked what exactly was Ryder's diagnosis, I knew he had Primary Immunodeficiency, but also knew that there were tons of different subgroups. The Nurse Practitioner told me he was Common Variable Immunodeficiency (CVID). This is one of the more common types of PID. She explained that if you lined up 100 people with CVID they would all pretty much have different symptoms and blood results which is why the word variable is in there. For Ryder he even more specifically has a lack of memory cells within his immune system. This means when he has a vaccine his body shows a slight response, but it disappears very quickly which leaves him with no antibodies. When a normal person gets a vaccine (or even a strain of a virus) their body automatically produces antibodies. Then when you encounter that exact same illness/virus your body has memory cells which produce more of the antibodies and fights off the infections/disease/virus. Ryder is not able to do this. Along with his lack of memory cells he lacks IgG and IgM antibodies along with low IgE.

4) The Nurse Practitioner is going to send a letter from the Immunologist along with a packet of information regarding CVID and being in school to Ryder's school nurse. The information will basically outline what Ryder has and what precautions need to be made. The school will need to contact us ASAP if there is an outbreak of any type of illness/virus/disease so we can pull Ryder from school. Also, we will need to keep Ryder home when the school administers the FluMist each year. It will also give the nurse information about any reactions or side effects Ryder might exhibit from his treatments.

5) Monitoring: The Nurse Practitioner said in 6 weeks Ryder will need to have blood work done to check his antibody levels. Based on those results they will know if they need to adjust his Hizentra dosage. The dosage is based on weight so as Ryder gets older his dosage will increase. They will want to see Ryder in the office every 6 months and do blood work to check some organ functions to make sure he is not showing any signs of reactions or problems from the Hizentra. She said we will have contact through phone and e-mail so if we feel Ryder starts getting multiple infections again or if we have any other issues they can be dealt with quickly.

Once we were done with the infusion the Nurse Practitioner broke the news to Ryder that he would need some blood work done. Usually Ryder happily gets on my lap and watches the needle "drink his blood", but today he wanted nothing to do with it. He screamed the whole time. I felt so bad, but I know it is for the best. The Immunologist also gave me a lab slip to have Zak's antibody levels checked since CVID is a genetic thing. This doesn't mean Zak will have immune issues, but it is better to check it out and make sure. They also want me to have Zak's vaccine record faxed to them from the pediatrician.

Ryder has been slightly irritable today, but I admit I have pretty much been spoiling him rotten since we got home. As he gets more used to the treatments this special treatment will have to slow down, but today I felt so guilty for putting him through this ordeal.

Immunologist Update

2011-01-24T14:32:00.005-05:00

This morning Ryder and I were in the car and heading to Hopkins by 7:10am. Ryder's appointment was at 8:15 and we were checked in and he had been weighed and measured by 8:30am so that wasn't too bad. We only had to sit in the exam room for about 3 minutes before Dr.Lederman came to see us which was really good.

He started off by asking how Ryder's infection history has been since we saw him in May so we went over all of that. Then he did a physical exam on Ryder looking at everything. Once he was finished with all of that he sat down and showed me Ryder's blood work results. He had it all in a nice chart so it was pretty easy to understand once he explained what the numbers meant.

Apparently they use the Prevnar vaccine as the main diagnostic tool for kids when looking at primary immunodeficiency issues. His initial antibody values ranged from 0.1-0.4 which Dr.Lederman explained meant he had no antibodies from the vaccine (even after having the normal 4 doses babies receive). Then he had a booster shot given and more blood work 1 month later which showed values ranging from 10-33 which Dr.Lederman explained shows a response from his immune system, but not to the normal extent that would be expected (pointed out a 6-7 month fetus would have that type of response). Then we looked at the antibody values from 6 months after the booster shot was given which ranged from 0-0.4 which once again shows no antibodies. It was obvious to me at that point that something was not right about Ryder's immune system.

Dr.Lederman told me he feels with the number and type of illnesses/infections Ryder gets along with all of the blood work results that Ryder definitely has a Primary Immunodeficiency Disease. The only actual name he mentioned was the Transient Hypogammaglobulinemia, but said he is no longer transient. He then went on toe say he feels it is in the best interest of Ryder to start him on IV Immunoglobulin treatments which are basically IV antibodies to help increase Ryder's immune system.

The actual product that Ryder will receive is called Hizentra. They went over all of the information about this, showed me a video and discussed the options we have for administering it to Ryder. We decided to go with the weekly at-home infusions (another option was monthly IV treatments at the clinic, but they said many younger kids have more side effects from this option and due to my knowledge of needles from my Diabetes they felt it was best to try the in-home infusions). The first infusion will be given to Ryder at the clinic so they can make sure he doesn't have any reactions to the product. I was told the most common reactions are soreness, redness or swelling at the infusion site, headache, and nausea. They told me if he experiences the nausea they will be able to prescribe a medication to give ahead of time to reduce it. During the first infusion they will teach me how to administer the infusion so all future ones can be done at home on a weekly basis. Dr.Lederman said he was is not able to tell us right now if this will be a life-long thing for Ryder, but it is a very high possibility he will require these infusions for the rest of his life. They also gave me a prescription for EMLA cream which will numb the skin where Ryder will receive the infusion so he shouldn't actually feel the needle insertion, but they told me it will take a while for him to "get used" to the whole process.

I am waiting to hear from the Immunology office, but out hopes are to have the first infusion on Friday as long as insurance moves quick enough and we don't run into any issues with insurance. I have tried looking up the Hizentra online through the insurance company to find out if it needs pre-authorization or what not, but can't find it listed anywhere so not sure if that is a bad sign or not.

Snow

2011-01-12T09:35:00.006-05:00

Yesterday in the evening it started to snow and sleet. Robin was going crazy about the snow so she spent a ton of time outside last night. She loves snow! This morning we woke up with about 3 inches of snow. Schools in our county were closed today even though the roads seem to be fine and many other counties only had delays. As soon as Zak woke up this morning he started yelling "It snowed! I need go out and play now!". So I bundled them up and we went outside to play for a while this morning.

I took a bunch of videos of the boys playing in the snow. Zak liked throwing the snow. Ryder was funny because he wouldn't really pick his feet up so he would slide his feet along the ground when he was walking.

Gymnastics

2011-01-11T10:02:00.000-05:00

On Saturday morning we took the boys to the first class of the new session at YMCA. This session we decided to have them do a class together. We chose a mini gymnastics class because it was something new for them to try and we felt it might be good for Ryder to work on some coordination skills. They both had a great time. It was extremely obvious that Ryder is delayed physically compared to the other kids, but the class had kids ranging from 3-6 years old also. Zak still needs to work on waiting in line for his turn, but hopefully participating in these classes will help with that.

Zak doing forward rolls

He actually almost does a head stand at one point

Ryder doing his forward roll

Ryder doing his pencil roll

His old OT told me he doesn't keep his head down because of some vestibular insecurity he has, he doesn't like the feeling of rolling or being thrown or swinging

Zak doing the pencil roll

On Sunday I got really sick once again and was unable to hold any food or drinks down. I knew I wouldn't be able to function n Monday so the boys had a sleepover with Nanny & Poppy. They went to the state park which I think they loved. They told me all kinds of fun things they saw and did. This is a picture Rich sent to me from his phone.

Health Update

2011-01-05T17:31:00.002-05:00

I feel like our house will be filled with germs forever! This morning I decided to go to the Target clinic for Zak and I to be checked out. I have been dealing with this cold for what seems like weeks and Zak has also. The doctor looked Zak over and decided to put him on antibiotics for a sinus infection. She then looked me over and said it was viral. I hate that word...viral! She did give me a prescription for Flonase to try and help clear out my sinuses so they don't get infected.

While there she said this viral thing going around is taking 2-3 weeks or more to run its course with people. That is not what I wanted to hear. She said for me to take Mucinex along with the Flonase. Then she told me to use the Children's Mucinex for the boys to help clear up some of the side effects of this viral thing that they have in addition to the infection going on. I am trying hard to get rid of the germs in our house so we are being very diligent about hand washing, hand sanitizer and using the sanitize function on our dishwasher!

I also have an update from Ryder's most recent lab work he had done for the Immunologist. He had booster shots done about 6 months ago and then some blood work done the beginning of December. On Monday I called to see if they had the results yet since I had not heard anything yet. The nurse practitioner told me they had the results, had discussed them and the head doctor (Dr.Lederman) had them on his desk because he wanted to call me himself. She said she would talk to him and let him know I called so that he gets back to me ASAP. This afternoon I got a call from a scheduler saying she was calling to make an appointment for Ryder with the Immunologist. I was confused so asked what the appointment was for. She told me the note said to schedule the first available appointment with Dr.Lederman for follow-up to results from recent lab work. So Ryder has an appointment for 8:15am on January 24. I can't believe we have to wait until then to find out what is going on! I am thankful we some how got in with one of the top Immunologists at Hopkins, but it is so hard since he only sees patients once a week and is nearly impossible to get in touch with. I am going to give the nurse practitioner a call tomorrow to see if she can give me any idea as to what is going on. I will make sure to update the blog when ever we find anything out.

Happy New Year

2011-01-03T09:17:00.005-05:00

This post is a few days late because I have been in bed for the past 3 days battling a stomach bug. That was no fun at all! Actually, everyone in our house has been sick with something. It all started on Saturday December 18 when I took Ryder to the pediatrician because he had been coughing for about a week. He ended up on Omnicef for 10 days to treat pneumonia. We had his follow-up on Monday December 27 which went well with his lungs being much better. He still had a cough so they told me if he got worse to bring him in to get looked at again. Well, on Thursday December 30 I ended up taking both boys to get checked out by the pediatrician. Zak had started coughing and Ryder was coughing along with very snotty and just looking sick. We left that appointment with Zak having a virus and Ryder starting a course of Zithromax for a sinus infection. Today was the last day for Ryder's antibiotic, but it stays in his system for 10 days. If in 5 days he is still sick (which is is today still) then we are supposed to refill the Zithromax and do another course of it for him.

Meanwhile, Ben has been battling a really bad cold which I think could probably actually be a sinus infection. I started having a cold right around Christmas. I woke up around 4am on Friday with a stomach bug which stuck around all weekend. I was able to keep down some small stuff last night and feel better this morning. Ben went back to work today so I am forced to function today. I am hoping after I eat some more over the next few days my headache will go away and I will be feeling much better. I am still dealing with this cold as well. Zak seems to be pretty much the same at this point with his cough and runny nose. Hopefully we will all be better soon!

Today my plan is to get the house back into order. It pretty much feel apart over the weekend!

Now on to the good stuff, I have a bunch of pictures I wanted to post from the last few days. Laura and Haleigh came over for dinner on Thursday so I took a bunch of pictures then.

Zak is practicing to have twins of his own!

Playing with their monster trucks

Zak building with Trio blocks

Ryder with Handy Manny tools

The boys inside of their tent

Haleigh playing with the boys' toys

Ryder trying out Zak's skates

Ryder playing with a new toy

Haleigh was pushing Zak around on the skates

Haleigh

Zak dressed up as a Teenage Mutant Ninja Turtle

Tweedle Dee & Tweedle Dum

Ryder goes back to school tomorrow and I need to get Zak signed up for a new session at the YMCA. Ben starts back with his Monday night volleyball starting tonight. So things are picking back up and we are slowly getting back into our normal routine.

An update on Zak and potty training. It has been going really good the past few weeks! He has been wearing underwear all day and a diaper at night. He is getting really good about just going to the potty to pee during the day when ever he needs to go and he will tell us while we are out and about when he needs to pee. The big news is that he actually pooped in the potty 2 days in a row this past week!! It is still a work in progress, but he is making progress so that is what matters. It is amazing how having one of them in underwear during the day has cut down on our number of diapers!