Last week was brutal. I emotionally hunkered down and waited for the storm to pass. It did and we are feeling a bit more pulled-together about things. But first! Jude's labs came back lower (this is good) and he is within the normal range! Thank you Lord! Glad to have that behind us.
Now on to Katy Jane. After getting home from the EEG and settling back into our routine, she started some new little movements. She was circling her arms and legs and then a few days later started slapping the right side of her head. Of course I immediately assumed she had a brain tumor because once you've ever been told one of your children has cancer you naturally assume that every odd thing they do is the early warning signs of cancer. I talked to the GI doc, the neurologist, and Dr. Honey about it. The GI doc said it was neuro, not GI. Neuro said it was GI, not neuro. Dr. Honey made appointments with 2 different specialist...one a movement disorder neurologist in Dallas and another one that is some sort of specialist (can't remember her title) for autism. Yes, autism. When I got this news, I was driving. I had to pull over. Not what I expected to hear. I was devastated.
I discussed everything with Brad later that night and he was as dismayed and staggered as I was. We prayed and talked it through.
SO....here's is where we are. I'm going to go with my gut on this one. Or maybe I should say I am going where I feel the Lord is leading me. I do not think it is even in the realm of possibility that Katy Jane has autism. I think she has Sandifer's Syndrome. And that is it. And part of Sandifer's are those crazy movements. I know she has GI problems because I sat and watched her reflux on the X-ray while she had her upper GI. I took her off the bathanechol after getting the A-bomb dropped on us. My gut was telling me that the medicine was causing more harm than good. Since taking her off she has seemed to perk back up. Her eyes have come back alive. She is more cheerful. She has not slapped her head once. Her spasms are less. Here is a comparison of her (with Zintha) from a few weeks ago, on the bethanechol and one from yesterday (with her brothers) after being off the bethanechol for 5 days.
Also, just the one meeting we had last week with the physical therapist has helped immensely. She gave me several things to be working with KJ on and Brad and I have been religious about it. We are already seeing improvement in just one week. When we started all of this my brother in law Andy told me that as she learns to walk and the stronger those muscles get, the GERD will begin to improve. I think that is what is contributing to her spasms improving also.
I'm not going to keep the appointments with all the specialists because I really feel like it is completely unnecessary. She has improved a great deal and I have a total peace that she is perfectly fine.
The limits of our faith and strength were once again tested last week. How many times can we get devastating news and continue to bounce back from it? When will we be able to walk into a storm and not flinch anymore because our faith in the Lord is unflappable? I want to please the Lord and thank Him for all of the circumstances He allows in our lives. I want my kids to see me not be easily shaken by tests in our lives, but to see our faith increase and abound. Because tests and trials and hardships will come. And it matters how we handle it. It matters if my children see us pull together as a family, kneel in prayer, offer this up to the Lord and trust Him and wait expectantly for His provision and grace as opposed to if they see me fall apart and lack a sustaining faith in the same Lord that I tell them to trust and turn to. I think it even matters if they see me pause, for even a moment, in self-pity or self-reliance instead of immediately clinging to and calling upon the Lord that is my refuge and my fortress...running to Him without wavering.
Tonight after saying prayers with the boys and tucking them into bed, James pulled up his pajama top and looked at his chest. He said, "I can't see Jesus in my heart but I know He is in there." That is faith. Sweet, innocent, accepting faith.
We have always told the boys that they have to be doctors when they grow up. James is adamant that he will not be a doctor but will be a chef. Jude seems to have bought into the idea of being a doctor. And after all that sweet boy has been through he will certainly breeze through medical school. He is constantly checking us with his stethoscope.
Mom and Dad have been gone to Washington DC visiting my sister. They have almost been gone for 2 weeks and I am just about fed up with it. They have no business leaving me for that long. In 35 years I have never been away from my parents for this long and I don't like it one bit. Neither do my kids. They will be back at the end of this week. We miss them so much. I know they have had fun and all, but dang. Enough already. Come home!
Look at my handsome nephews! I love those boys!
Today we had to go to the pet store to get Isabella's dog food and the boys always like to look at the animals while we are there. While they were looking James stopped, stood bolt upright, shivered all over, and said, "I don't like those black fish. They give me the heebie jeebies!" They are pretty nasty...all bulbous and dark. Grody.
We moved on to the rat-like animals...I don't know what they are...rodents? chipmunks? gerbils? Something like that. But the chinchilla really got to him. His father has the same aversion to chinchillas. They are totally creeped out by them for some reason. James put his hand up beside his eyes to block his view, grabbed Jude by the hand and said, "Let's get outta here!"
The birds were a safe bet. We will stick with visiting the birds.
After our rough week last week, today started off fresh and new with the good news on our Judie Bug and an encouraging conversation with Dr. Honey about Katy Jane. God is so good to us. I know everything is going to be ok. Psalm 91:14-16-"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation."
Now on to Katy Jane. After getting home from the EEG and settling back into our routine, she started some new little movements. She was circling her arms and legs and then a few days later started slapping the right side of her head. Of course I immediately assumed she had a brain tumor because once you've ever been told one of your children has cancer you naturally assume that every odd thing they do is the early warning signs of cancer. I talked to the GI doc, the neurologist, and Dr. Honey about it. The GI doc said it was neuro, not GI. Neuro said it was GI, not neuro. Dr. Honey made appointments with 2 different specialist...one a movement disorder neurologist in Dallas and another one that is some sort of specialist (can't remember her title) for autism. Yes, autism. When I got this news, I was driving. I had to pull over. Not what I expected to hear. I was devastated.
I discussed everything with Brad later that night and he was as dismayed and staggered as I was. We prayed and talked it through.
SO....here's is where we are. I'm going to go with my gut on this one. Or maybe I should say I am going where I feel the Lord is leading me. I do not think it is even in the realm of possibility that Katy Jane has autism. I think she has Sandifer's Syndrome. And that is it. And part of Sandifer's are those crazy movements. I know she has GI problems because I sat and watched her reflux on the X-ray while she had her upper GI. I took her off the bathanechol after getting the A-bomb dropped on us. My gut was telling me that the medicine was causing more harm than good. Since taking her off she has seemed to perk back up. Her eyes have come back alive. She is more cheerful. She has not slapped her head once. Her spasms are less. Here is a comparison of her (with Zintha) from a few weeks ago, on the bethanechol and one from yesterday (with her brothers) after being off the bethanechol for 5 days.
I'm not going to keep the appointments with all the specialists because I really feel like it is completely unnecessary. She has improved a great deal and I have a total peace that she is perfectly fine.
The limits of our faith and strength were once again tested last week. How many times can we get devastating news and continue to bounce back from it? When will we be able to walk into a storm and not flinch anymore because our faith in the Lord is unflappable? I want to please the Lord and thank Him for all of the circumstances He allows in our lives. I want my kids to see me not be easily shaken by tests in our lives, but to see our faith increase and abound. Because tests and trials and hardships will come. And it matters how we handle it. It matters if my children see us pull together as a family, kneel in prayer, offer this up to the Lord and trust Him and wait expectantly for His provision and grace as opposed to if they see me fall apart and lack a sustaining faith in the same Lord that I tell them to trust and turn to. I think it even matters if they see me pause, for even a moment, in self-pity or self-reliance instead of immediately clinging to and calling upon the Lord that is my refuge and my fortress...running to Him without wavering.
Tonight after saying prayers with the boys and tucking them into bed, James pulled up his pajama top and looked at his chest. He said, "I can't see Jesus in my heart but I know He is in there." That is faith. Sweet, innocent, accepting faith.
~~~~~
Last week, it went from being hot outside to freezing the next day. James asked if we could have a fire. It seemed so strange to be having a fire in May.
Today we had to go to the pet store to get Isabella's dog food and the boys always like to look at the animals while we are there. While they were looking James stopped, stood bolt upright, shivered all over, and said, "I don't like those black fish. They give me the heebie jeebies!" They are pretty nasty...all bulbous and dark. Grody.
The birds were a safe bet. We will stick with visiting the birds.
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Christi