God's Peace: A Beautiful Gift

                                                So, off to the neurologist we went.  David has a great pediatric neurologist that is wonderful with him.  He is actually the first doctor that he has seen that David feels completely comfortable with.  He just kept smiling and laughing at the doctor and just played in his office like he was just there to hang out....until he started to measure his head.  lol  After that was over he still just thought he was so nice.  While we were there we showed his doc the video of his episode and went over his history.  David had just had his year review of his Early Intervention Occupational and Speech Therapy.  He had declined cognitively in some areas and so that was a concern.  So, the doc had recommended what I was hoping for.  David had already previously had a sleep deprived EEG which came out normal before the episodes had increased in severity.  So, this time he and David's developmental specialist recommended that he have a MRI and another EEG done overnight at the hospital.  For both of them he would be sedated. I was relieved because I felt that if we were going to have another EEG done I wanted to make sure it wasnt the exact same test....I wanted to make sure we were checking all that we could.  I was also thankful for the MRI because David had not yet had one and even though I wasnt fearful there was something terribly wrong with his brain I wanted to make sure that we tested everything we could. So about 10 days later David and I stayed overnight at Roanoke Carillion Childrens Hospital to have the tests done.
                                     My husband Brian was going to have to work so was not able to stay overnight so I stayed with David that evening.  Brian had planned on dropping us off at the hospital and when we were settled he was going to have to go directly back to work.  But, it turned out that he was able to take the whole day off for that first day we were there.  At first Brian was saying his goodbye to us and actually left and I cried when he left.  I felt like such a wimp.  I had just realized that I was more scared than I had thought and all the stress just came pouring out.  I cried out to the Lord and asked for peace.  I was over tired because I hadnt slept very well the night before.... four hours.  I was so tired and I was overwhelmed because I knew it was going to be a long day.  But then he suddenly came back in the room and said that he had gotten to the elevator and said, "forget this!  I am staying!" He called his boss and he was able to take the whole day off of work. I was sooooo excited to see him!  I was just praising the Lord! I hadnt realized at that moment how thankful I was truly going to be. I am grateful that the Lord gives you just what you need when you need it.  I could feel His presence in all the situations that we were facing and in all my conversations with every doctor and nurse and I was so thankful. God's peace is a beautiful gift.
                                   A few hours later the nurses came in and prepped him for his MRI.  All four of us had to hold him down to get the IV put in.  He just screamed and cried.  It was HORRIBLE!  We kept singing to him silly songs and even put on his Veggie Tales music to try to calm him down.  The only thing that actually calmed him down is when we resorted to playing a Veggie Tales video on our ipad. Works every time!  lol  The nurses were sooo patient with him.  They were so sweet and loving and I was very grateful for the care that he received. The pediatric ward was wonderful.  They had a wagon that we could pull him in.....and we did that for hours....I mean hours!  :)  The only thing that we had wished for was much longer hallways.  We circled that nurses station so many times it was rediculous!  LOL
                                  Then it was time for his MRI.  They had told me that he was going to be sedated and they let me come in the room while he was being sedated.  They put the gas mask on him and I just looked at him and kept telling him he was okay.  Then he was out.  By the way right before I left the room they laid him down and his eyes rolled back.  It looked scary and very much like when someone is going into a seizure so it really freaked me out.  But, he was fine. I dont really care to see that again.  They completed the MRI and he came out of the sedation like a ticked off redhead!  LOL  But he did very well.  That evening he was hooked to the IV and slept all the way through the night.  I however, did not.  I was sooo tired and I just wanted to sleep but all I could hear were the machines.  I probably got an average of four hours sleep again that night. But, I was sooo thankful that David was able to sleep all through the night after all he had been through that day.

The next day would be another adventure........
                              
                                   
              
                                   

Seizures or Stimming?

                                                            A few weeks ago David and I had an adventure! We had a slumber party at the hospital....just he and I! I have written in my previous posts about the possibility of David having seizures. So, I thought I would take this time to update on where we stand right now. David had been having these "episodes" since probably around 10 months old. They started out where all he did was tremble anywhere from a minutes to ten minutes. It looked like he had the chills for up to 10 minutes....that is the only way I can describe them. Then they slowly increased in severity. David started jerking a little bit more which I chalked up to stimming.
                 For those who don't know what stimming is I will describe it. Stimming is when the child is over stimulated because they are excited or if they feel uncomfortable with something. It is a defense mechanism to comfort themselves from the overstimulation of the world around them. They do physical things or make sounds that comfort them and calm them down. For instance, you may see a child who is on the spectrum walk on their toes, flap their arms, make weird facial expressions etc. When David gets really excited about something or if something scares him or upsets him he will do these things. Stimming can also be things like drooling when the child feels uncomfortable with something. An example of this with David is when he is presented a food that he is uncomfortable with due to its smell, color or texture he will sometimes start drooling or stiffen his arms up and cry. It all has to do with sensory issues. It looks very cute when they are really little but can look very strange as they get older. This is where the differences in your child and other children start to be very noticeable.
                          These episodes started increasing in severity and in frequency. He would start to shake mildly and then start to uncontrollably shake from head to toe. His hands and head would jerk violently. He would stand up the whole time of this episode but I could not get his attention during it. The last two episodes that he had I was not able to get his attention after it was over. He would just stare when I would repeat his name. I had sent a video to his developmental specialist at 10:00 one evening and the next morning she called me and said she wanted him to see his neurologist as quickly as possible. Being that I have epilepsy I had thought that these were seizures but knew that stimming can look very similar depending upon the movements. It scared me when he wasn’t responding at the end of the episode. So, on to the neurologist we went.

More to come..... Yes, I am back to making you wait for the next part of the story! :)