Looking Back: How it all Started…

While looking through another “special” mom’s blog about her sweet daughter, I saw some pictures and read some comments that brought back a rush of memories.  When I started this blog, were were a couple years past the “beginning” of this journey, but I did write several Facebook notes as we were struggling through getting a diagnosis.  So this post may be a little long, as I’m copying each one of those here, to keep them all in chronological order.  It’s a little painful to look back on those times and remember the hope that it was nothing big-that the doctors wouldn’t find anything and he would just “grow out of it” as so many people said for so long.  But it’s part of who Bryce is today, and I wouldn’t change a thing.
(Due to the copy/paste from Facebook, the layout of this blog post is atrocious! I apologize in advance-just do your best to slog through it) 

The Enduring Saga of Bryce and his speech issues

by Nicole AndJared Burkholder on Tuesday, March 18, 2008 at 7:59pm ·

Ok, so I’ve never written on one of these things, but I figure it’s like a blog, so here goes. I took Bryce to the neurologist today. His Pediatrician recommended it, just to be sure we weren’t missing anything in the whole “why doesn’t Bryce talk yet” department. Sooooo, after answering the same questions I’ve answered a million times, the Dr. said what I already know…he’s a tough case, doesn’t fit the typical guidelines for Autism, there are some serious concerns still, etc. He really didn’t tell my anything new, but he did say that he would recommend him for speech therapy (which my insurance has already turned down once). AND, now he has to have an MRI (which there’s NO WAY on earth that he will hold still for, so he’ll have to be sedated, bringing up more insurance issues), and sleep deprived EEG (so we get to wake up in the middle of the night and haul Bryce down to Corona, so they can hook him to a machine and look at his brain waves) and on Friday I get the pleasant job of holding him down while some lab tech tries to draw blood!!! YUCK! After all this, we have to go back to the neurologist for another visit. Yay. I just hope this isn’t a big fat waste of time and money. But like the Dr. said, he’d love to be proven wrong, and we will give Bryce the benefit of the doubt for now. However, if we don’t raise any concerns, he won’t qualify for any help that he needs. And, we could never know for sure what’s wrong-we just have to keep doing what we can and hope and pray that things work out in the end.

Taking blood from a three year old should be an Olympic event

by Nicole AndJared Burkholder on Thursday, March 27, 2008 at 5:55pm
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Soooo, I had to take Bryce to get his blood drawn last Friday. THAT was an experience, I must say. Poor guy, he was not happy. The scary part for him was being held down. I had my legs wrapped around his, my right hand holding his left hand, which was crossed over his body, and my left arm holding his body against mine. He started crying once we had him held down. Then they took what seemed like an eternity to decide where to stick him (while I’m holding a VERY strong boy down and trying not to puke myself). Finally she got the needle in-I don’t think he even noticed at that point. He was just sobbing this sad little cry. They took four vials, so it took awhile just to finish. I think everyone waiting in the room with us was a funny shade of green and yellow when we were done. BUT, he bounced back quickly and was over it once I took the tape off his arm and got him into the car seat. What a brave boy!

Now, we have to go to Loma Linda for an MRI. That should be scheduled next week sometime. He has to be sedated for that one. (I’m sure that won’t be too bad, unless they use an IV for the medicine. If that’s the case, see the above paragraph.)
Then, on April 14th, we have to somehow keep him up until midnight the night before, and then wake up at 3AM and keep him awake until 5:30AM, at which point they want me to magically hit the button and get him to sleep, so they can do an EEG on him while he’s sleeping. Do these people have kids??? I’m not looking forward to that day either. All of this had better show something, or we just had a big, tiring, painful waste of time!

My day began at 3am and I am so sleeppppppppppppp;/.///kkkkknm

by Nicole AndJared Burkholder on Monday, April 21, 2008 at 10:17pm

Well, we took Bryce to his EEG today. That was an adventure! We had to keep him up until midnight Sunday night, so we went over to Grandma and Grandpa’s house after church until 10:30pm or so. Then we went to Winco to get some groceries (I think people there were wondering what kind of parents we were to have our son out that late). We were home around 11:30pm and I put him to bed. We then desperately tried to get to sleep as quickly as we could, while sucking ever last bit of rest from our brief “nap.” At 3AM the alarm went off and my body said whaaaaa??? Poor Bryce was so confused when I went into his room to wake him up. He kept pulling his blanket back up over his head and trying to ignore me. We finally got him up and convinced it was a normal morning (shower, dress, eat breakfast and watch cartoons). At 4:15 we left the house to head to Corona. I was nervous when no one was there to let us into the Dr.’s office, but a lady showed up around 5:10 and let us in. I had to get Bryce settled down and back to sleep as quickly as possible. And would they have a nice comfortable bed to sleep in? NOOOO, that would make people’s life too easy! He just had to lay on a regular examination table! That hard, plastic stuff with no covering at all. Poor kid. Luckily he was delirious with exhaustion and put up with it. I got him to sleep after 20 minutes or so and called the nurse in to begin the test. She had to get like 30 wires connected all over his head without waking him up! She kept saying things like,”he must be a light sleeper” and “does he always move like this?” Wouldn’t you, if someone was sticking paste on your head and shoving things all over you? I had a tough job just to keep him asleep/drowsy enough not to notice that his head was a technological form of Medusa. Well, we finally conquered and got him hooked up and ready to go. Of course, he slept very soundly once we stopped poking him. So the rest of the test went well. We drove home and went BACK to bed at 7:30AM (I am usually just getting OUT of bed at that time). Got a couple more hours of sleep in before having to get to work for the day. Wow! I’m ready for bed! That’s all for nowwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww;af

Major Medical Tests are not Designed with Children in Mind!

by Nicole AndJared Burkholder on Thursday, July 10, 2008 at 1:55pm
We finally had Bryce’s MRI done today. His neurologist wanted one to help rule out Autism and check to see if there are any abnormalities. As all of his other tests have come back negative, we are not expecting anything to show up on this either. But it was just good to have it done and have the films on hand for any future problems. We should find out the results in a couple days. It was more traumatic for me than Bryce, I think! He had to be given and IV, in case the sedative didn’t work well enough, and because his MRI was with contrast, which is where they inject something that lights up abnormal parts of the brain and maked things easier to see. The IV was the worst! He started screaming as soon as they put the rubber band around his arm. :( He kept saying, “Are you alright?” “All done!” “Thank you, all done!” That did for me. I was bawling like a baby and trying to keep him from seeing me cry so he would believe me when I said it was ok! :) They finally went with the foot for the IV, which was easier to hold him still and keep him from pulling it right out. After they were done (props to the Tech-once they decided on the spot, the needle was in and out really quickly) I was able to sit and rock Bryce for awhile to calm him down. Then we had to get him to drink this nasty smelling stuff that would put him to sleep. Most of it ended up in my hands and all over his shirt, but I guess it’s pretty strong, because 15 minutes later he was asleep! After that, things were easy. I left him with the Nurse and she wheeled him into the MRI room. I don’t know what happened after that-the scan took about 50 minutes (which is why he had to be sedated). They came back when he was done and we went with him to recovery. He was already awake when we got there, but still a little dopey. It didn’t take long at all for him to come around and he checked out with good O2 levels and BP. We are home now, trying to keep an active boy quiet and still for the day! Thanks for your prayers!

Bryce’s Diagnosis

by Nicole AndJared Burkholder on Wednesday, September 9, 2009 at 1:17pm

Well, several years of struggle and wondering have sort of come to a head this week. We took Bryce back to the neurologist last Tuesday for a one year follow up of his last visit. During that visit, he decided to officially diagnose Bryce with Autism Spectrum Disorder. He says that Bryce has a Mild to Moderate case of autism. This wasn’t really a surprise, since everything else has pretty much been ruled out, but it’s still hard to hear. The thing that really pulled it all together was a meeting that I had with his teacher yesterday. She told me last year that she was ready to change everything in his next IEP to show that he was exhibiting obvious signs of autism the older he got. Things especially got worse at school after the baby was born. She started to broach the subject with me at the meeting, when I interrupted and said that we were just going to tell her that we had a diagnosis from the neurologist as well. Talking to her about his behavior in class and seeing the progress as well as the red flags was helpful. It pretty much solidifies the diagnosis in my mind, so I don’t feel like we’re missing something and just “settling” for a diagnosis. Anyway, the good news is, since he’s now diagnosed, he qualifies for more services from the school district! The BEST news is, his teacher has been fighting for an ABA program in the school. ABA is Applied Behavioral Analysis, and it’s an early intervention technique for spectrum kids that teaches skills they need in life, but in small easy steps. Not all autistic kids are helped by this, but his teacher and I both think that Bryce would thrive under this instruction. It’s also every day, instead of a couple times a week. PLEASE pray that the district gets the program going quickly. Bryce’s next IEP meeting is due October 30th, and we will discuss his new services then. THIS WILL REALLY HELP AND WE NEED IT!!!! :) Another thing we are doing is applying for SSI child disability, which would help pay for additional speech therapy and other services at home. That takes up to 6 months to get approval, so we’ll just have to wait and pray, but it would help in the financial are immensely. We just can’t afford the help that Bryce needs, so we are at the mercy of the school district. (Which also means he has to be a student in the public school system-something I NEVER wanted for my family) If we can get some funding, we may be able to still get him in Christian school or homeschool later. SOooooooooooo, that’s the latest. Please pray with us about this-it’s our daily burden that we carry. We are glad to know what’s wrong, but sad to know that there’s something wrong with our “baby”, you know? But he makes progress daily and is a joy to our family-I wouldn’t have him any other way. Thanks for your prayers!!!

 

2 thoughts on “Looking Back: How it all Started…

  1. The blood draw brings back memories of when Daniel had a seizure and was in the ER and they drew blood. Yep, me too, holding him down and him crying — awful!!! They had a board on his arm, and we’re in the hallway on a gurney, and the nurse misses the vein. Perhaps a phlebotomist would be better?! He was 20 months old. When you said that Bryce said, “Are you all right? All done!” oh, my….that’s exactly what our son says when he’s frightened. They are all so different and yet so very alike.

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