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Sunday, May 5, 2013

More hard conversations, and also HOPE!

First of all, I just wanted to say we got an incredible response to my last blog post--lots of support and encouragement.  We appreciate it SO much and we love all of you guys.  Also, people have been checking on us and asking us how we are doing and I apologize for not getting on here sooner to post an update. With giving attention to Korban to prevent any behavior issues and then loving on my Selah who I missed all week it was difficult to get in front of a computer.  And as you can see when I get started I really let it go and it becomes lengthy.  This is a goal of mine to be able to take more time and blog more regularly so we will see.

We are home and doing well.  Korban got discharged from the hospital Wednesday evening.  Before leaving the hospital we found out that his EEG did not show any sign of seizure activity and his MRI was normal.  The neurologist took him off of the Depakote (seizure med) because his liver enzymes were elevated, which is not good.  It has a high risk of side effects and he doesn't need to be on it if isn't absolutely needed for seizures.  I'm relieved to be off of it.  We will start Trileptal later this week to help stabilize his moods.  So please be praying that it helps him and doesn't make anything else worse. 

As for the MRI, we had it done on Wednesday morning.  They came in early and took off his EEG leads and then started an IV so that would be done before he got down to the MRI waiting area.  It took them four tries to get the IV in, which I really hated.  But once we got it in, he was fine.  They gave him Benadryl to help calm him down and he went right to sleep.  He was still sleeping when we got down for the MRI and Brad got to take him back and lay him on the table so thankfully there was no trauma there.  The neurologist told us later that the MRI did not show any signs of brain damage or anything like that.  However, he did say that the history of the placental abruption combined with Korban's developmental history makes him suspicious of a mild brain injury.  Basically the thing that concerned him the most about Korban's history was how stiff his muscles were when he was a baby.  We noticed it and thought it was unusual but the pediatrician he had his first year didn't seem to be concerned.  In fact, no one ever mentioned it to us until we saw the developmental specialist at age two and a half.  The neurologist checked Korban's reflexes pretty extensively and pointed out some abnormal reactions to us.  He said that was also indicative of a brain injury, but if there is one there it's so microscopic the MRI didn't pick it up.  There's not anything we could do to "fix" it and there's really no way to even prove it's contributing to any of Korban's symptoms.  So it's pretty much another piece of the puzzle that we kind of know but it doesn't really mean anything.  

We also got some of the results of Korban's blood work.  Mostly everything was normal, except for the liver enzymes that I already mentioned and his iron and vitamin D were a little low.  Nothing major, but he needs some really good vitamins.  They sent off some blood to do a chromosomal micro-array.  This is the same test we had done about 4 years ago that found Korban's chromosome deletion, but the technology has improved and the dr wanted to see if another array would get us any new information.  But we won't hear from that for about a month, so I'm not even really thinking about it right now.

Also, the neuro-psych dr met with us again before we left.  He met with us individually because Korban was awake when he came and he didn't want to talk in front of him.  This was basically to give us the results of the testing that took place on Tuesday.  I wasn't sure how much they got out of the testing, because Korban was not wanting to cooperate.  They explained to us that the hospital isn't really the best place to test kids of course, but since he was there and we were willing, they got what they could.  The neuro-psych dr began the conversation by telling me that the results showed that Korban's IQ is 47 which means he has mental retardation.  Again, that was something new to us--no one has ever applied that diagnosis to him before.  We've always been told that he was too young to decide if he had any significant cognitive delays, and like I said before, Korban is not extremely cooperative with testing.  So I'm not totally sure if I believe that diagnosis.  I'm not in denial.  It is what it is.  If he does have mental retardation, we will deal with that too.  Doesn't really change anything.  I just don't want to underestimate his abilities and not expect things from him.  Just one brief example of why I don't think this is necessarily a good summary of his abilities:  Back in March, Korban had the ABLLS (Assessment of Basic Language and Learning Skills) done.  This was done at his dr's office in Southaven and Korban's ABA guy and a colleague of his did the testing.  In my opinion, it was very child friendly and was also pretty visually oriented. (Kids with autism tend to be very visual.)  At one point in the testing, they laid a mat with pictures of different animals on it out in front of Korban and asked him to name the animals.  He named every one, even the hard ones like "hippopotamus." I could tell they were impressed and I remember this well, because I thought to myself "That zoo membership paid off!" Okay, so with that in mind, the lady who did the testing on Tuesday said  to Korban "Now we're going to name some animals!"  I thought to myself "Great!  He's going to blow this out of the water!" and waited for her to pull out some pictures or something.  Nothing.  She said "Name as many animals as quickly as you can!" and Korban just sat there.  After about the fifth time we asked him, he got up and walked off, calling "Gorilla!" over his shoulder.  At least he got one.  And of course it would be monkey related. (He loves monkeys.)  And maybe she was specifically trying not to use any visuals just to see how well he could do with a verbal command.  I don't know.  But I didn't think the testing method suited him very well.  I had to fill out a ton of paperwork, and I didn't think some of it applied to Korban very well at all.  One question wanted to know if he could call a repairman if the refrigerator wasn't working.  No, he can't! Can typical seven year olds?  If they can, then I'm going about this parenting thing all wrong.  Maybe I should just scrap teaching Selah to recognize the letters of the alphabet and move on to the Yellow Pages.  Another question asked if he could be trusted to ride his bicycle one mile to a friends house.  Again, no!  For multiple reasons.  For starters, he can't even pedal a tricycle due to the gross motor delays.  And even if he could ride like Evil Knieval, no child of mine is going to be allowed to ride anything for a mile away from me, unsupervised.  Anyhow, like I said, it is what it is. 

That dr also went over the same stuff the neurologist did about how I needed to rely on others for help more, that I need to make sure to keep me and Selah safe, and that at some point we might have to consider a residential facility.  I asked him if Korban was significantly more aggressive than other children he has worked with.  He told him that what troubled him the most about Korban's aggression is that it is indiscriminate.  He said that other kids he has worked with were only aggressive towards their primary caregiver, because that's who they trusted the most and were the most comfortable with.  He said that while it is true that I bear the brunt of most of Korban's aggression, he will lash out at whoever happens to be around when he is upset.  This is true, and it is very troubling.  He also mentioned that he "felt sorry for us because we can't go anywhere."  I said "What?  We got lots of places."  And then I named some.  Church, theaters, the zoo, the aquarium, the beach, etc.  He was shocked.  He said "Aren't you worried about people seeing him hit you?"  Of course I worry about that!  I worry about him hitting me whether there's anybody to see it or not, but it truly is worse when you have an audience.  But we don't just stay at home because we want him to have the same experiences that other children enjoy.  We try to go as a family, so that we can work together to meet the needs.  Sometimes it goes better than others, but we are going to go places as much as we can for as long as we can.  Truthfully, it really stresses me to think that it might get to the point that we couldn't go places.  And he also mentioned that residential treatment might become a necessity at some point.

Also, both doctors made comments such as "You're fighting an uphill battle."  "He is a difficult child to raise." "This may get worse before it gets better."  "You need to plan for the future."  Again, all true stuff but not easy to hear.  Please know that it wasn't said to us in a hateful way.  They were doing their jobs and helping us to see the reality of our situation.  We are glad we had the tests done and were at least able to rule some things out.  We're thankful he wasn't having seizures, but it's weird because that might've helped explain some of his behavior.  We are sort of trying to treat the unseen and that's hard to do, but again, we're glad it wasn't worse. 

I told Brad later that I think people have a tendency to underestimate me a little bit.  They see me as someone small and soft-spoken and maybe interpret that for weakness.  Believe me, sometimes I feel VERY weak, but if there wasn't strength from God deep inside me, I wouldn't be where I am today.  So this little mama is ready to fight the good fight!  We are doing everything we know to do to make a good life for our family, but I think it is time to do what Emeril says and kick it up a notch.  Which isn't going to be easy because I'm already tired, but I will have to draw on that strength and move forward.  Because apparently, our lives depend on it. 

As I mentioned earlier, the amount of support we have received has been awesome and very humbling.  People have shared our story online, and checked on us daily to let us know that they are praying for us.  We appreciate every single person who has taken the time out of their day to do this.  I also need to say that we have gotten a lot of support from the professionals that actually know Korban and work with him on a regular basis.  I have to say, if me and Brad were saddened by the things said to us at the hospital, Korban's professionals were righteously indignant!  Which really bolstered my spirits.  I'm speaking of his teacher and his two ABA therapists.  His ABA guy came to see us Tuesday night, and Korban was really happy to see him.  He showed out too--it was very funny when the nurse came into get his vitals, Korban kept saying "Ow! Ow!" like it was killing him and looking over at the ABA guy to make sure he was listening.  But it wasn't a convincing performance because Korban was grinning the whole time!  Silly boy.  He seriously loves some attention. Korban kept stealing his hat too! 

When the ABA guy left, I walked out in the hall with him and told him what the drs had told us, especially regarding the whole institutionalization business.  He was shocked and appalled.  Said he had not seen any indication of that with Korban, and that this is the first year he's had ABA therapy and that he has only just begun getting it at school and at home.  Of course, Korban's teacher and our ABA lady felt the same way, which makes me feel really good.  Drs say what they have to, based on the brief snippets of our lives that they see, and on their past experiences, but these are the people that are working in the trenches with us day in and day out, so I value their opinions.  Of course, I have so much respect for the medical profession and I value their opinion too, but like I told the ABA guy that night, I need to keep my family together.  And I'm gonna need them to help me do it.  (I don't ask for much, do I?) Before he left that night, he told me to put the institution thing out of my mind as best I could. 

We left the hospital Wednesday evening, and since we were exhausted and Korban was begging to go back to the "hotel," we stayed another night at the FedEx Family House.  I cannot say enough good things about that place.  It was awesome.  So we finally got a decent night's sleep and Thursday when we checked out we went over to The Pink Palace--it's a cool museum in Memphis and we have a family membership through a Groupon deal--and then we had lunch at Incredible Pizza, one of Korban's favorite places.  I was more than ready to get home and see our sweet Selah, but I'm so glad we took some time to relax and have fun before we came home.  Like I told Brad, I just wanted to take some time and remind myself that we were leaving Memphis with the same kid we brought up there.  We had a great time and it helped a lot. 

People keep asking me if I am okay, and the honest answer is, I'm not too sure.  What is okay, anyway?  I'm in a much better place emotionally than I was last Monday.  I still have a sense of panic over Korban's aggression and what could happen if things don't get better, but I also have many reasons to hope and a belief that things WILL get better.  Thursday, Friday, and Saturday were all very good days for us.  Today has been tough, or at least the morning part was.  Korban had some pretty major meltdowns and lashed out at all of us some.  He's taken a very long nap this afternoon, so I'm hoping he was just tired and that he will feel better.  He has been very playful and in a good mood the past few days, and I just love seeing him like that. We all do.  He pulled Selah's hair once last night (the only time all day he was aggressive) and she just cried and said "I thought he was being a nice Korban!"  So pitiful.  He had played with her so good during the day and she doesn't understand why those things happen.  I try to explain to her but it is so hard, especially when I don't totally understand myself.  This morning Korban was trying to be mean to Selah and Brad held him so he couldn't get her.  He was screaming and crying and wanting to get down and Selah ran up and "spanked" her Daddy and said "Let my brudder go!  Don't you be mean to him!"  Which was really sweet and funny, but she truly doesn't understand why Korban is mean towards her sometimes or the measures we take to try to help him calm down and not hurt anybody. 

Thanks again for all the prayers!  Please keep them up.  Pray that we can have more good days, and that Korban responds positively to the change in meds.  We are thanking God for the good results on the EEG and the MRI. Keep praying for Selah, for her little heart to understand and accept her brother, and for me and Brad to be strong and courageous as parents.  And also, sane.  ;)  Pray for Korban's precious teachers and therapists.  I know they truly care about him and are called to do the job they are doing.  Thanks to everyone and may God richly bless you all. 

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