Tuesday, November 4, 2008


I cannot believe how fast the months pass! I'm going to start with just some random stuff and then talk about our last couple of weeks and HALLOWEEN! The boys had so much fun with their play dough that grandpa bought them. Last month I played with them, and this month daddy got a chance to. He was much better at making realistic looking robots. He made Jayden an optimus prime that looked pretty convincing and even got it to transform for him. I wish I had taken still pics of it. I just got it on our camcorder.
My favorite Jayden quote for the month is this. He and daddy were talking about Jesus and he said: "Jesus is nice, he not bite me." He has also used this statement to describe daddy. (He is sometimes scared of animals, and I assume he got it from us telling him that our friends and family's dogs are nice. Who knows?) Ethan continues to string longer and longer sentences. His record that I know of is eight words. He said: "I don wan go nigh nigh, I wan car!" He got a little tikes car for his early birthday present. (We wanted him to be able to use it before the weather got too cold.) He is obsessed with it! He spends a lot of time in it and doesn't like it too much when other kids want to share it :) My favorite thing Ethan says it "okay" "I don wan to, okay?" It is so cute! :)
Speaking of Ethan, we have had a pretty busy couple of weeks with him. He has sure had a lot of struggles in his little life. He was born prematurely, and spent a couple of weeks in the hospital after birth. Then was again at primaries three months later with the flu and struggled with lots of ear infections and minor things like that throughout his first year. He seemed to continually fall behind in physical things and eventually seemed to almost stop moving around at all. We were concerned and found out it was just an iron deficiency problem that was easily fixed. Early this year he had a surgery on his eyes to help strengthen the muscles so they wouldn't drift and cross. After the surgery, we had hopes that he would leap forward developmentally and would have no more difficulties. The surgery did cause some miraculous changes and Ethan seemed to see better. This caused such an improvement in him, he seemed like he was seeing the world for the first time! However, in the months since then, he hasn't had some of the physical improvements we had hoped for. My doctor was concerned and advised that we have him checked again by a state program that helps special needs children. He met with a physical therapist and a pediatric neurospecialist of some kind. We had met with them the year before, and at that time they seemed less concerned. We had discovered his iron deficiency problem around the same time, and assumed that maybe that was linked to all of his delays. I left feeling incredibly relieved that there was nothing serious wrong.
My second meeting with them was a couple of weeks ago. They basically play with him to assess his gross and fine motor skills and look for possible problems. They called him globally delayed meaning he is delayed in many areas of both gross and fine motor skills. And worse, in the course of their assessment, they think he might have had a minor seizure. The physical therapist was AWESOME, and she had him laughing and totally at ease with her. All of the sudden in the middle of engaging with her, he just blanked out for like ten seconds. I probably wouldn't have noticed it, but they both got very attentive. And admittedly it was strange just because he was in the middle of playing and having fun. They were also concerned with the fact that he shakes a lot and some other things, so they advised that we have him take a couple of tests and see a neurologist. It was pretty troubling to hear that. I went expecting just to ease mine and my doctor's worries about him.
I have to say that I am grateful for these two people. They spent nearly two hours with him and seemed to care so much about his well being. In fact, the physical therapist said that he needed a walker to strengthen his legs. She called around and found me a used one so that I didn't have to pay for it through my insurance. And she had it to me in only two days! There are just so many great people in this world! The man who gave me the walker runs a foundation to provide equipment to special needs kids. He does it in memory of his son who died 5 years ago. He had to make his son's equipment when he was alive, because they couldn't afford to buy it. So he helps other children in his same situation. What a great guy huh?
The night after the MRI, Ethan wasn't very happy...:(
Jayden liked that we went and bought Shakes!

Last thursday, the 30th we starved him so he could be sedated and took him in for his MRI. It was a little scary, but everything went well. They told us to expect him to be grouchy when he woke up, but he was actually just acting very silly. He was totally cracking us up! He would try to hold himself in a sitting position with his head bobbing up and down. We would lean him back against his bed and he'd shake his head back and forth and laugh a groggy little laugh. Then he would slide sideways because he couldn't even sit up leaned against the bed for support. He tried to hold his graham cracker and eat it himself. He dropped it and didn't notice, then tried to take another bite with nothing in his hand. Hitting his mouth to take a bite was another hilarious difficulty for him. And when he talked to us he'd use this silly voice, all high pitched and excited. He seemed to think everything was very funny. I hate to use this comparison, but he almost seemed like a very happy drunk. :) Unfortunately, later in the day he wasn't so happy, but it was fun while it lasted. He was still VERY GROGGY all day because it takes 24 hours for the drugs to completely wear off. The one big problem with this was that he had an EEG the next day. We had to keep him up two hours late and wake him up two hours early so he would be sleep deprived. Jay took late night duty which was pretty difficult toward the end. I had the easier early wake up, but the worst part was keeping him awake during the car ride to the hospital! That test was fast and easy and we got some pictures of him with all of the wires stuck to his head. He basically just slept during that test too. After that we let him nap for a couple of hours before doing all of our Halloween activities.(I'll do a separate blog about halloween) It was a REALLY LONG day, but we were glad the tests were over with.
Here he is getting all ready for his EEG!

Today we finally got the results. The eeg came back showing nothing which was really good. And it doesn't look like he is having seizures either. But the MRI showed a problem. We will be seeing the neurologist tomorrow, but this is what my pediatrician told me. He has something called periventricular leukomalatia? He is basically missing some of the white matter in his brain. This is usually caused by bleeding in the brain at birth, and usually only happens to premature infants. Luckily, in ethan's case there was only a little bit of bleeding, which means there is less damage than there could have been. So after all of that medical stuff, it basically means he has a mild case of cerebral palsy. The good thing is that though it will never go away, it will also not get worse. With therapy, she said they can train his brain to compensate for his weaknesses.
I was a little overwhelmed when she told me, even though I had been trying to prepare myself for it. My mother in law knew that is what they were testing for, so I at least knew that was a possibility. I am not trying to complain. I am very happy that it is not anything life threatening or degenerative. And I would feel silly complaining because I know that this trial is NOTHING compared to what millions of other kids and their families go through. Also, I have faith that the Lord only gives us the trials that we need and that will help us to reach our eternal destiny.
In fact, one of my favorite quotes is one my mom shared with me from a talk Elder James E Faust gave. It says: "President Brigham Young offered this profound insight that at least some of our suffering has a purpose when he said: "Every calamity that can come upon mortal beings will be suffered to come upon the few, to prepare them to enjoy the presence of the Lord... Every trial and experience you have passed through is necessary for your salvation." Knowing about the gospel of Jesus Christ and the plan of Happiness, brings endless comfort and peace into my life. In addition, I am thankful to be in this country where he can get the help that he needs. In spite of all of the craziness in our government, I still think we live in the greatest country in the world. We are very blessed.


Rachel said...

I agree, we are definitely blessed to live in this country and to have the gospel. SO BLESSED. I'm glad you had your mother in law's knowledge to prime you for the results. While it is very hard to take, I hope that Ethan will be able to take it all in stride and show his immense strength in the years to come. He is just SO sweet and we all love him SO MUCH! It wouldn't be fair to have his sweet angel spirit here with us without a little bit of a test of our own strength too. I love you and your family lots and hope you'll let me know if there's ever anything I can do for you! Love ya!

Ben and Taryn said...

My heart aches for you but I can already tell that this challenge is strengthing not only your family but others as well. You have already been so blessed and it sounds like the Lord is already watching out for you and Ethan. I just can't wait to see you guys for Thanksgiving. We love you!

Connie and Rob said...

Every time something new happens in our lives, I am reminded of how wonderful it is to have the scriptures and the teachings of the prophets to help us understand why we are here. There is so much more purpose in everything than is immediately apparent. Nothing ever turns out quite as perfectly as we dream it might, but I have a feeling the end result will exceed our dreams. Even the emotional "if only" feelings seem to be part of the growing process. Our conversations, Tara, have given me much food for thought - and prayer. We want so much for our children. Our Father in Heaven does too. He is just a lot more wise than we are about what they REALLY need and who they REALLY are. It is such an adventure to watch what each child does with what they are given. Even with my grown children it is still fascinating to see the process of growth. This special circumstance of Ethan's is helping our family to grow in many good ways - just like Lydia's special circumstance has done. I can only feel gratitude when we are given challenges that encourage us to serve each other and to reach out for spiritual answers. And if the choice were to have Ethan, with a few handicaps, or someone different, with a perfect body - we'd choose Ethan. And the Lord knew we would. So we got him! Lucky us!!

Tara said...

I was very touched by your post. I am so glad that your little guy will be OK and that you have found wonderful doctors to take care of him. You have a great perspective and I'm sure that with such a wonderful mother as yourself, he will amaze the doctors with his progress!