Monday, January 22, 2018

Neurologist Update

Today, we had our follow-up appointment with our Pediatric Neurologist. We love Dr. Jones, and it's always fun getting to spend a few minutes with her. We talked about all of the issues that have been going on - especially the day that James nabbed my phone. We talked about how in some ways it seems like we are reverting back to those crazy toddler days before we even knew what was going on with James.

We started off with her letting me know that his MRI looks exactly the same as it did the last time it was done... which is a GOOD thing. Don't get me wrong - I love that result, but I was wondering if these behavioral issues were the result of a change there. That isn't the case - so we're back to the drawing board of finding the balance for James.

She gave us the all-clear on the MRI for 18-24 months -- so we don't have to worry about that again for a good while... which is nice.

We also talked about a test that a friend of mine mentioned -- it's a cheek swab test that brings back a list of what medications work well for the patient and what won't work at all. The website for the test paints it a bit differently - as in the test is a miracle that will magically tell you the exact medications that will work best... sadly, that isn't reality. Dr. Jones explained that it basically brings back the patient's detailed liver reaction to each medication -- which can be helpful, but it doesn't directly point you to specific meds. She did say that one benefit to the test is that it can stay with him for life -- so if anyone ever needs to put him on medications later in life for whatever chronic illness may or may not come... it'll have information on what drugs might work best for him.

I feel good about that given that I can't help guide him on what he might be allergic to - where I can with Tyler to a certain degree. At least as far as my medical background goes - so the only mystery for Tyler would be John's medical background... but even there - we know that John isn't allergic to anything.

After talking through that test - we looked at what tweaks we can make to his medicines - so for the next couple of weeks, we are going to try a new patch that gradually doses his medicine over 9 hours. I don't know how the patch will work, but it's the same medication that he has been on and we've had success with it -- so as long as he will keep the patch on, it might work well. Additionally, we are going to give him one of his other pills a couple hours earlier to see if that'll help slow him down in the witching hour when he just seems to be like a tornado.

Lastly, we talked about how he is doing academically - which is hard for me to answer. I'm of the mindset that they are always behind, but I know that is partially me being hard on myself. I feel like in some areas they are doing well, and others we are a bit behind... but I think overall we are doing as well as we can. Everyone keeps up for the most part - so we will just keep plugging away. I hope everyone is having a great start to their week... and I'm hoping to get back to this blogging thing more often -- since we're 95% over this flu now.

Saturday, January 20, 2018

Catching Up

Since my last post -- we've had a doozy of a week and a half...

James got his MRI taken care of, but that was an ordeal. My poor buddy got stuck several times before the nurses decided that they should give him some gas to knock him out so they could get it. We decided that we won't ever try that again without giving him the gas, to begin with... I'm not sure who had more trauma from that experience - John or James. While James was getting his test done; Tyler, John, and I went downstairs for some breakfast. I wasn't feeling that well so I didn't eat, but we learned that Tyler has no problem with hospital food. HAHAHA.

John woke up that morning feeling under the weather, and he was set to travel to Belguim on Sunday - so I made him a doctor's appointment that he could go to once we got everyone home from the hospital. We went back upstairs, and after a few minutes, they called me back to see James. He woke up talking and has not stopped since... unless he is sleeping. They told us that he might be groggy for the rest of the day from the anesthesia... they lied.

He was back full speed from the moment we got home. Ready to go, but we tried our best to keep him at a slower pace for the rest of the day. John made it to the doctor, and they told him he had bronchitis.

By Saturday, he had a 102 fever - so he called and talked with his team leader, and they decided to cancel his trip. Thank goodness they did that... by Monday, I was diagnosed with the Flu A. I made it to the doctor on Monday evening, and then the ice storm hit - so the city was shut down on Tuesday and Wednesday. Well, by Tuesday evening - we knew Tyler had the flu as well... but with everything closed, we couldn't get them to the doctor until Thursday morning.

Thursday morning, both boys were diagnosed with Flu B - so we've been quarantined ever since. John was able to work his meetings in Belgium from home so he has been with us the whole week. While we were at the pediatrician's office - we discussed with him the possibility of John having been misdiagnosed with bronchitis earlier in the week - and he thought it sounded plausible. He told us that the Flu test can be falsely negative, however, it normally is accurate for most -- but at that point, there wasn't any need to go back for another flu test because Tamiflu couldn't help him at that stage of the illness.

We are hoping that we can get completely over this Flu and get back to normal again -- with a good LONG break from being sick. I mean, I haven't sneezed or coughed that much in my LIFE. My shoulder blades hurt. My lungs hurt. My nose hurts. We are all exhausted. Back to bed for me...

Wednesday, January 10, 2018

At a Loss

I've never felt more alone and isolated in my life. Before you think this a plea for attention, please know that it is not. I know most will never read these words, and I'm okay with that... I won't even share this on my personal social media accounts because really the only reason for writing it is therapy for myself.

I haven't shared too much about James or his issues with the world -- because I didn't want him to be labeled or thought of differently than any other kid, but the truth is... he is very different from any other child.

At a very early age, he was diagnosed with Neurofibromatosis Type 1 - which if you google it is incredibly frightening. It is a condition that can cause tumors to develop in his body during his growing years, but it also has a strong effect on how his brain functions. We are closely monitored by a pediatric neurologist, and he has annual MRIs to check his brain for tumors. As of last MRI, he had no tumors. The condition is also the reason he is so small... which is a blessing and a curse. NF1 is at it's biggest threat level during the growing years - so it's a battle between is he growing enough or pushing the envelope and potentially causing the fibroids to develop.

What he does have is SEVERE ADHD. It's been explained to us that in his brain, it's like all of his nerves are inside of drinking straws, so information is not processed or even received in the same way as all of the rest of us. He struggles with everything in ways that are hard to describe, but at the same time, he is brilliant. He just can't recall information when asked like others can, for instance, if you ask him questions -- he can't answer them, but sometimes he will spout off information that is incredibly smart.

He hyper-focuses on things, usually one or two things at a time. Those items have been; vacuums, washing machines, cars, dogs, shots/IVs, and more. That means that over the years - we've listened to thousands of hours of vacuum cleaner noise, and had more help with laundry than is actually helpful.. clothes rewashed hundreds of time just so he can watch them spin around. There is so much more than I just can't even type.

Three years ago we started down the path of trying to get him medicated help because he can't function without it. We've gone through so many medicines with so many different reactions. We've been through hallucinations (which with a child is unnerving) and several other issues, but for a while, we were regulated and doing REALLY well. He was able to function, learn, and be on a decent schedule.

When his medications are working - he is the sweetest child. So loving that you wouldn't even believe the defiant whirlwind of untamed energy that his unmedicated self-brings to the party. It's like two totally different kids. Night and Day, if you will.

About a month or two ago, he started having some paranoia issues so we started down the path of changing his medications to see if we could get into another good place. This has been the longest and worst months of our lives. If you can imagine at 7 years old... he is reverting back to things that he did as a toddler... he chews on his clothes, and runs wild in the mornings before his medication getting into everything he can. Trust me, we have put things up high and the whole nine yards -- we fix it and he finds something else to get into or to do.

Which brings me to this morning -- he stole my phone and called no less than 200 different numbers before John and I were awake. This list includes cousins, grandparents, multiple friends, and even 911 (at least twice)! Those that did talk to him, told him to bring the phone to one of his parents... to which they were told we were sleeping. Some find this stuff funny, but as a weary mom who deals with this stuff daily... it's just not. I don't find it funny - it's mortifying.

I am literally at my witts end with this kid. I've changed my code to my phone, but tomorrow it'll be something else entirely that he does. Like the time he made snow angels in the bathroom with powder, or the time he ate blue food coloring, or the time he sprayed essential oils all over his dresser -- its never anything he has ever paid attention to before. There just isn't any planning for it - unless we clear the house of any items at all.

Yesterday, he was great - we had a lovely time at a birthday party. He ran around, played and wore himself out with his friends. I thought we were doing better, but I was wrong. A false sense of things getting back to normal.

Most will never understand what is happening with James, 98% of the time... I don't even understand what is happening with him. We know that he can't help it, but when he is bouncing off the walls at midnight or making phone calls at 6AM... the knowledge that he can't help it just doesn't relieve the frustration. I know he is struggling, and God knows I'm trying everything I can think of to help him... but I just don't see a light at the end of this tunnel, and that right there is the most frightening and helpless feeling of them all.

If I can plead with everyone for a minute -- I know that we've all seen kids out in the world that we immediately think, "oh if he were mine..." -- please the next time you see that happening... don't go there. Inside of that situation, none of us have any idea what is going on behind the scenes... maybe they are bad parents, maybe they are lazy, but maybe... just maybe they are dealing with so much more than you can ever imagine. For moms everywhere that are struggling - I get it and I pray that you and your child come to a place of peace.

Wednesday, January 3, 2018

Christmas Recap

Whew, we've been so crazy lately -- it's funny how every year I forget that Christmas is basically a two and a half week long sprint. I'd say marathon, but it's really not... it's just GO GO GO for about 18 days!

We started off this year with my mom visiting, and the boys had a ball with her. We celebrated with gifts, and dinner at Benihana. The next day we went to see the movie Coco, and then both kids got super sick... which wasn't fun, but clearly it's going around heavily this season -- and no one has come down with the flu in my house, so I'll take it! We visited Santa the day before Mom came too - so I'm including that with her celebration.

Next up was Christmas Eve; which we made the most of - cooking, baking, making reindeer food, putting out reindeer food, reading our traditional "Twas the Night Before Christmas", and a few pictures under the tree before bed. 

Christmas Day was split into two parts -- but we had our morning at home where Santa came,  we opened gifts from each other, and we had a nice breakfast. We then got cleaned up and went to the Hawkins Family Christmas... where we ate again... and again... and again... We opened more gifts, another round of stockings, played with cousins, and had our Christmas Dinner of prime rib. 

Our last official Christmas Celebration was on December 30th, which is when we celebrated with my Dad's side of our family. All 17 of us in one house... it's always a good time. We had a great lunch, enjoyed more stocking fun, opened gifts, and played games. It's always such a fun day for everyone -- and my niece brought her puppy which was great fun for the 3 little boys... they wore Duke out for the day! 

For New Years, we took a slower approach... with LOTS of resting time. I'll update you on that tomorrow!

Friday, October 27, 2017

Minecraft Cake

We decided to brave the world of making our own birthday cake for Tyler's birthday party because we are gluttons for punishment. It truly became one of those "let's make the cake, they said. how hard can bit be, they said..." 

In the end, the birthday boy was thrilled... and it wasn't a Pinterest Fail of epic proportions. 

We started off researching what we needed to make and collecting supplies. We made a 4 layer cake that started with a 12x12x2 inch cake pan... in reality, we cut about 2 inches off of it so it was 10 inches on each side and 8 inches high when it was all said and done.

To make cakes of this size, each layer required a double batch of cake... so for ours, each layer represents 2 cake mixes. We chose to do 2 layers of white and 2 layers of chocolate cake. 

We started making our cake on the Tuesday before the party (Saturday) -- on that day we only made the cakes. We let the cakes rest the night in our cube-shaped cooler that John layered delicately with cooling racks and cake pans.

On Wednesday, we made our butter-cream icing and built the main structure of the cake. We used the Wilton recipe made with shorting (we did the variation for stiff white butter-cream) because we wanted to make sure that the structure of the cake wouldn't be susceptible to falling over if it got to be room temperature while sitting at the party. It took about 3 double batches of icing to cover the entire cake. I used a pastry bag and a cake frosting tip to make this easier on myself. We also chose to dye the frosting brown so that you wouldn't see white if there were any gaps in our fondant pixels. From here, the cake was placed in our outside refrigerator.

On Thursday, we dyed all of our fondants - we ended up with 3 shades, 3 shades of brown, and gray. To cover this entire cake, we used one 5 pound box of Wilton White Decorator Preferred Fondant. John made a template (yes, we would share if asked) in Excel that told us the total number of squares we would need and then we were able to break it down by how many of each shade we would need.

On Friday, we cut out a billion and one fondant pixels. We used a cookie cutter of sorts that allowed us to cut nine 1 inch squares of fondant each time you cut. We had to use some powdered sugar in place of flour while rolling out our pixels. We placed them on sheet trays and then into the fridge for the night. We were a bit worried about the fondant falling off the cake before the party - so we opted to put them on the cake that morning. By the end of the night Friday:

  1. We printed our templates and put them on our cookie sheets 
  2. We put a layer of wax paper on top (starting with the top layer of the cake)
  3. We filled in our pixels and made sure to stick the fondant squares together - start with the top of the cake as that is the last layer you adhere to the cake
  4. Repeat with a template for the sides and wax paper
  5. As each layer was finished we took the wax paper and layered them all on to one cookie sheet
  6. We let the 5 walls chill overnight in our refrigerator

Saturday morning (at like 10:30 -- the party was at 12), we did the final adhering to the sides of the cake. We put our layers of pixels (one side at a time) on the back of a cookie sheet. We gently brushed it with water, and positioned them onto the cake - then we took a fondant smoother to press the sides into the butter-cream on the cake. When you adhere the top, you don't need to brush it with water - and we used an extra cake board so that we could just flip it over onto the top of the cake.

It didn't end up perfectly, but for our very first attempt at cake decorating -- it went pretty well!

Tyler's Aunt, Susan, made the Creeper, Steve, and pig for the top of the cake... he was thrilled with how it turned out. 

If you decide to make one of these on your own, please let us know and we'd be happy to pay our lessons learned forward and help you as much as we can!