Pictures and Videos

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

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

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

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.