Friday, November 15, 2013

Ankle Braces to EEG's and possible Paroxysmal Spells, an update on my kids

I have not posted much about my kiddos lately. I struggle with sharing what is going on with my kids medically. It feels like we are always doing tests, and then the tests come back negative. This morning I was so tired I just wanted to scream and cry. I hit that point of being so tired of not being able to help one of my kids that I crumbled. It is a bit of a struggle when you have adopted children to figure out what their underlying conditions are. In all of our childrens situations their Biological Moms were honest with us about alcohol and drug use. Unfortunately that does not tell us much, it just confirms that there will be problems.  So let me fill you in on what has been going with them.
JayJay going and going and going

JayJay is kind of my Energizer Bunny. She just keeps going and going and going. She has a case of the horrible awful 3's but other than that she is doing great. I cant even complain about the awful 3's because she really did not have a case of the terrible 2's. Thank goodness I have one that (at the moment) has no health issues.

LeiLei is a bit of a puzzle. We are still trying to put the pieces together. I have had two professionals tell me that she needs to be tested for seizures. Really??? So, I took her to the doctor today and he ordered an EEG. His diagnosis was Paroxysmal Spells. I believe she will have the EEG done next week. I don't have all the details yet, but she has to be awake for six hours prior to the EEG that way they know she will be sleepy. The EEG is done while the child is sleeping. Oh did I mention six hours of awake, DURING THE NIGHT... I am going to be one tired mama!!! She continues to see her Behavioral Therapist which has really helped us, help her.  I fear it will take quite some time before we fully know how to help our little girl. Point of the story... Do NOT DRINK while you are pregnant. Not even one glass of wine... Enough said

Ademan continues to have Speech Therapy, Feeding Therapy, and Physical Therapy every week. His speech is really coming along in regards to the expansion of his vocabulary. Now that he is talking more they are realizing that there is also something wrong with the sound of his voice. It looks like he will have to be Scoped (under anesthesia). The thought is that maybe we are missing something anatomically that is creating a very monotone sounding voice, and causing aspiration. He will be having another Swallow Study in a few weeks to tell us if there is any improvement with his feeding. The Scope will be done some time after the Swallow Study. We just cant seem to shake the whole aspirating issue when he eats. He continues to be healthy, meaning no pneumonia, thank goodness.  Ultimately you do not want to be aspirating. Physical Therapy is going well. They ordered his ankle braces this week so it shouldn't be long before he is rockin those bad boys! Point of this story... Do not NOT DO DRUGS while you are pregnant.

No child deserves this. I have to remind myself not to get angry, because anger does not fix anything. When I look in my childrens eyes and I see the that little twinkle it reminds me that there are no bad children, just bad circumstances. Had we not adopted these three, any one of them if not all of them could have easily spent their entire childhood in Foster Care. None of them have been easy, I guarantee that they would have all been in multiple homes already. In all honesty before we adopted them they were already in multiple homes. JayJay = 2 homes before she was 6 months old,  LeiLei = 3 homes before she was 7 months old,  Ademan = 6 homes by age 1. I say that anger does not fix anything (and it doesn't) but it does drive me to do more.


  1. Ah Meri. You do have your hands full. At least care is available for your 3 little ones. I know how tough this must be for you and Evan. Not knowing is the worst. You are right anger doesn't help, it just gets in the way. And a reminder, don't drink or take drugs when you are pregnant. Love, Aunt Linda

    1. My kids receive great medical care, thank goodness! The State does not fail them when it comes to that. We could not afford to do this if it were not for that.

  2. You are telling things as they are Meri. Great job. You are a saint in my book. If you hadn't opened your arms and home, these kids would have been lost in the system.

    1. Thank you Heather, I would fill my home with kids if I could. Then I would be the crazy cat lady, crazy dog lady, crazy goat lady and crazy kid lady. That's a lot of crazy!!!


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