Life had got the best of me since we went on vacation back at the end of August, and because of it my blog has really suffered. I figured it was about time for an update as to what is going on around here. There is a LOT which is why I haven’t posted in quite a while. We are in the process of figuring out a HUGE health scare for Ethan, just last week we had 12 appointments to go to in only 5 days!! Anthony has a cast and he also has had surgery.
I have a bunch of posts from Christmas that I am working on, yea I know they will be VERY late but I figure better late then never… Here is an update on some of the craziness that has been going on around here.
My RA (rheumatoid arthritis) is really under as much control as I think it will be. I have found a mix of medicines and natural supplements that are working for me better then anything else we have found so far. It is working so well that I have finally been able to taper my steroids for the first time in 3 years!!!
I ended up have a surgery to remove a couple cysts back in November, I have had them for years, but they had become quite painful. The surgery itself went great, the only problem is that I got an infection at one of the incision sites and areas around it which prolonged the healing process by a couple weeks. Just when I was starting to feel better, my Tachycardia goes crazy (it goes crazy when I get sick with anything) which means I can do almost nothing. If only I could have just a simple procedure without having complications that would be great sigh…
In other news I found out that when you tell some doctors that you are taking natural supplements instead of their prescribed medicines… Even when they are working just as well… It makes them want nothing to do with you, and not even finish looking into what is causing the problem.
We have been dealing with a deformity of his feet, we have been trying different orthotics at his podiatrist since he was 2 1/2, we even went down and had his feet casted and had them make special orthotics specially for him. But none of the were working, there were a couple weekends he spent the entire weekend on the couch in pain.
We decided to get another opinion before just doing surgery and went to go and see an orthopedic surgeon. He decided to do an MRI on both of his feet and found out he has extensive swelling and inflammation in both of his ankles as well as the foot deformity. So we decided to cast his foot 1 at a time for 6 weeks each foot, so he will have casts for the next 12 weeks. Our hope is that immobilizing the foot will help the inflammation and swelling go down, we are praying it works!
He also recently went down for a sleep study to figure out why he has been having very bad night terrors he has never grown out of, we got the results and he has sleep apnea as well as a leg movement disorder. They recommended surgery to remove his adenoids and tonsils and then another sleep study 2-3 months after the surgery to see if that resolved the sleep apnea or not.
We went in for surgery last week to have the tonsils and adenoids removed, he did wonderful but we were told that his tonsils and adenoids were HUGE. The first couple days were great and then went down hill fast. He wasn’t eating or drinking and couldn’t even swallow his own spit by the third day, so we had to bring him down to ER he was not looking so good. They gave him some fluids and Decadron (a strong steroid) because his throat was almost swollen shut, he ended up having a pretty bad reaction to the Decadron and gave us all a scare, but we left the hospital with a completely different kid then we came in with. I didn’t manage to get pictures before we came in(I’m sure the fact he looked horrible and told me he felt like he was in a dream made me not think about taking pictures) but I did manage to get one once he was FINALLY drinking something because his throat was starting to finally open up!!
Ethan has been giving us problems beyond belief ever since our vacation to the UP. He is having multiple huge meltdowns almost every day and most of them last for over an hour. We have brought him down to a psychologist because we couldn’t get into see our neuropsycologist until February and the problems just cannot wait till then to get resolved.
When we went into see this doctor also they discovered that he has extremely high blood pressure, a very fast heart rate and a very bad heart murmur (when his b/p and pulse are increased). She suggested that he might have some pretty serious medical issues and told us those need to be addressed ASAP and wouldn’t treat him until we seen some other doctors about the problems, this has lead us in for a lot of different testing and many doctors appointments.
In the tests, we discovered he has a vitamin D deficiency and have started him on a supplement for that. He has high iron levels, which now may have to be very closely watched, they ran some chromosome testing, they have tested for 2 different types of serious childhood cancers, scanned his brain multiple times to check for a brain tumor, found out that one minute his heart rate is bradycardic (low) and another it can be tachycardic (high) so they are testing him for SVT (Super ventricular tachycardia). They found out that he has Gliosis in his brain, as well as some type of paranasal sinus disease, still waiting to hear what we need to do about these.
Just in the last month and a half he has had the following tests done:
- Multiple MRI’s
- 24 Hour urine test
- Multiple blood draws
- LOTS of DR’s appointments
- Getting 3 new doctors to visit
- A halter monitor for 48 hours
- 2 EKG’s
- Genetic testing
Our first trip to the Children’s hospital for a brain MRI. They had to sedate him because it was about a 45 minute scan, and getting a 5 year old to sit completely still for that long was just not going to happen.
Our second trip to the hospital for brain MRI #2. The waiting room is a great and fun place for kids.
The child life specialists at the Children’s Hospital are AMAZING people and made it such a great experience for all the times we have been to the hospital or ER in the last couple weeks!! They came in and explained the whole procedure to him and showed him everything they would be using to do it. They also brought an I-Pad in for Ethan to play games and watch shows while they are putting their IV’s in.
For our 2nd MRI we were able to not sedate him because it was only a 15 minute scan, they put some special movie goggles on him and he watched any movie or show he wanted with the sound going through the headphones so he could barely hear the MRI machine, AMAZING!!
Just to give you a look into the craziness of our lives lately, just last week alone we had 12 appointments. Between going to each and every one of those appointments, homeschooling, cooking, keeping the house up, and all of the extra things I have been absolutely exhausted by the time the kids get to bed for the night. My evenings which are usually spent blogging are now being spent sleeping 😉
I have made a very hard choice this year one that I did not make very lightly, I have choose not to apply to participate in the Schoolhouse Review Crew for this crew year, due to the fact that my online time is limited due to the things we are going through right now. While I have loved spending the last 2 years being a part of this amazing group of people, I have to take some time off to focus on what is most important right now. I hope to be able to participate again next year, but we will see how things are at that point and time in our lives.
So I am very slowly getting through the emails that have poured in over the last couple months so if you have emailed me and I haven’t gotten back to you please don’t think I am ignoring you. I am finally going to work on some of my posts that are LONG overdue and will be outdated by the time they do finally post, but because I use the blog as a journal of our life for our family I figured they are posts I probably shouldn’t just skip.