We had a wonderful time visiting our families and sharing Kaizen with everyone. That being said........let's move on to the news part.......
Kaizen was admitted to the Primary Childrens Hospital for a week, exactly. They admitted us because we live so far away 1. and even though we were staying with family in Coalville, it would just be easier than to run back and forth getting tests.
And tests did they do........
He had another EEG, another MRI, a Spinal tap a PH Probe Study, blood tests, and multiple IV's put in.
The EEG came back, once again with no siezure activity. This EEG is actually the first time he had his "spasms/episodes" during it because they did it for a full 24 hrs. That way they could be sure that if something was there, they would be able to catch it.
In doing all of my research, Infantile Spasms was brought to my attention. So when the EEG came back with no signs of that, I was a lot relieved. But the Epilepsy Nerologist came in and said he really thought that his little spasm things looked a lot like Infantile Spasms and it is very rare that an EEG does not pick up on that type of wave length. So he suggested we treat them as if they were Infantile Spasms which requires Steroids. Along with all medicines there are side affects to keep in consideration.
Before we made any decisions the team of doctors came in and said they think since it is so rare that an EEG does not pick up Infantile Spasms when they are there, we should rule out other things before we jump right into Steroids.
They thought we should try to treat his spasms and stiffness for Spasticity by using the medicine Baclofen. Right now he is taking that and we have seen a little change but not a whole lot.....
The PH Probe Study is a 24 hour study that tests for reflux. Which would explain his arching and stiffness. During the test they asked us to push the #1 button everytime he had spit up or threw up. Push #2 everytime he arched, or had "spasms", and push #3 if he was crying (which I am not lying guys, he ONLY cries when he has his little episodes, and sometimes he doesn't always cry during them.) So after 24 hrs they told us the results.........
Four out of the Six times we pushed the button for any reflux, it came back that he was actually refluxing.
Fifteen out of the Fifty-four times we pushed it for "spasms", or arching.....it came back with reflux
and two out of the three times we pushed it for crying, he was, in fact, refluxing.
So they wanted to treat him with Reflux with the medicine Zantac. He has had it once before when he was around 3 months but kept throwing it up so we stopped using it. Now that he is 8 months we thought we would try again and see how it goes. They told us if he keeps throwing this up there are other medicines for reflux we could try. He started taking it good the first few times and then he started throwing it up again. This morning we gave him some and he didn't throw it up so we are gonna give it another try and if that doesn't work we will try another medicine.
The MRI came back normal, with the exception of the Myelin (the protecting layer around the nerves in the brain which is essential for proper development) was not developing as fast as it should be. They could also see evidence of the bleed that was there. It's all absorbed but they could still see where it was.
I gotta tell ya....Josh and I were very hesitant about taking him for another MRI because he didn't do so well with the last one in Billings. But this one was nothing like that one. He was calm, he didn't wake up screaming, and he didn't have any of the bad reactions he did with the last one.
All ready for the MRI. He looks like he is in Jail.....8 months old and in Jail......my my
About to start
They also diagnosed him with Laryngomalacia which is when the upper larnyx(the funnel-shaped organ in the throat that protects the windpipe) collapses inward during inhalation. In other words.....floppy throat. Which they see in a lot of babies and they grow out of it......thank goodness! Sometimes it is severe enough that they do surgery. But they didn't think Kaizen's was. :)
So..... Because KZ is only 8 months old. They couldn't really diagnose him with anything. He is still pretty little. But the doctors told us they were really all in agreement that he is showing signs of early Cerebal Palsy.
Yes this was hard for Josh and I to here and it is even hard for me to write right now, but we prepared ourselves for this. I had done so much research Cerebal Palsy popped up a lot, and I was almost sure that is what it was. It was just hard to actually here it, have it be said to us. It was even harder telling our families. But I want everyone to understand that Cerebal Palsy has so many different ranges. Some people walk around with it and you wouldn't even know it. Something that did make us feel better was the doctors think that KZ is so smart and they don't see his intellecual ability is affected. He smiles and laughs and anticipates his bottle and reacts when he sees it. Right now it is just a physical thing. I know he wants to play with toys and sit up, but his muscles just don't understand how to.
It hurts my heart seeing him not be able to do things or crying when he has his episodes. It is so hard because I can't do anything to make them stop. If I could take his hurt away, O how I would in a millisecond.
They told us that Physical Thereapy will help him sooo much! While we were there they showed us lots and lots of exercises to do on him plus they gave us handouts to help us as well. I am committing my life to this little boy even more than I already was. I am and will do his exercises as many times a day as I possibly can! I feel like his future lies in my hands and I DO NOT want to disappoint him. He deserves the best life possible! I cannot believe how much love I have for this beautiful innocent soul.
Before we left Utah, we had a lady come over to Josh's mom's house to do an aroma-touch therapy treatment on Kaiz. The treatment went great and it relaxed him so much. She even let me get involved which is great because I do better learning hands-on. We bought the oils so I could do it at home too. She told us she thought Kaizen was precious and that these kids are so special, they are called crystal children, meaning they have already learned what we have came to this Earth to learn.
My thoughts have totally changed these past 2 months, going from why is this happening to.....Wow! We are so lucky to have been trusted with this amazing gift!
I hope you all have a beautiful day! And that you may feel just as blessed and thankful as we do!
