Storm & Infusion

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

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

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?!

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.