Tuesday, February 24, 2009

The details of 2-20-09

I'm sorry it has taken me a while to post the details of Friday's visit. It has been a rather emotional thing for me, and I finally decided I should sit down and write it all out.

Mom and Chase went down with me last Thursday, and I'm thankful that they came with me that particular trip. Friday morning we had the appointment with his doctor at 10:00, and that went well. He still needed prodding to stay with us in the conversation, but overall he did better than the week before. A couple things that his doctor discussed with me before Eli joined us in the visit were...
* They've attempted to do the EEG twice now. No surprise he wouldn't keep still long enough for them to get readable results.

* He is starting on all of the other testing...problem solving, IQ, other neuro stuff, physical tests, coordination...and on and on. They are guessing that it will take near a month to get through it all since they have to do it in such small sessions.

* He is still not transitioning well from one setting or activity to the next. All kinds of change (in any form) is very difficult, if not flat out impossible.

* He is still very aggressive, and it's getting worse as they bring him down off of his medications more and more. They are working diligently with him on boundaries and personal space and not touching everybody. He pesters people to death sometimes, so this is a big one.

* He is down to a fouth of some of his meds, and others are down to half. Soon they will start stripping away each complete medication, but they are doing it so slowly to see what each med does for him, as well as the side effects that each one brings to his system.

* He has been getting more yellows which is an improvement...at least he's not getting all reds all the time.

*Nutrition is now a big issue. He is not gaining weight...and hasn't been for a year. He is PICKY with his food. When he was little he would eat everything, but now if it's not a peanut butter and jelly sandwich, more than likely he won't eat it. He's so thin, but it is good to know that they have nutritionists watching him and meeting with staff to figure out how to get him to eat different things. They are probably going to assign a cafeteria buddy to him to monitor what he's eating and to keep us posted as well.

Then after those things were discussed, Eli joined us. He was more engrossed in playing with the toys in the office than in keeping up with the conversation, and he had to be asked questions sometimes 3 or 4 times before we could get a good answer from him. But he was in a good mood, and was chirpy and happy to know that Nana and Chase were waiting for him.

When our meeting was over we went to the lobby to get mom and Chase, and the reunion was very sweet. Eli ran to Chase and hugged on him first, then went to my mom and hugged her for a bit. He was enthusiastic and very careful with Chase.

Lunch went well. I got him to eat most of his hotdog and some french fries, and it was really pleasant for the 4 of us. From there we went to the Point Store for his reward time and he decided to save his points for next week. (I'll explain Point Store in a post soon). After that, we all played ping pong and had a good time. Everyone was happy, cheerful, and things were going very well...just as I'd hoped they'd go. I posted two pictures of the ping pong time on my main blog, so go check those out if you haven't seen them. He and Chase were so precious together, and I was just overjoyed to see my boys together...the way brothers should be. It was all just going so well...

And then...

I had noticed that even from the time Eli joined the meeting he had been dancing around and grabbing himself the way little boys do when they have to go potty. I tried to get him go go during our meeting, but he was afraid we were going to leave, so he refused. Then during lunch...same thing. Then Point Store...same thing. So I finally put my foot down and made him go, promising him that we weren't going away and we would be right here. Well he went, but that started an enormous freak out session. Screaming, crying, pushing people, throwing things. He pushed Chase down a hill outside, and there was no reasoning with him when we tried to talk to him. One of the girls came over to see if we needed help, and he just exploded again, so we decided it would be best for me to leave. I went inside and talked to his doctor and she agreed, so in Eli's tantrum I simply went over to him and hugged his thrashing body and told him goodbye. The lady tried to lead Eli indoors, but he wouldn't go willingly, so she called out for help, reassured us that we were doing the right thing by going, and then she put Eli in a big bear hug and carried him inside kicking and screaming.

And that was how we left. He just was too stimulated by our visit. The change threw him into shock basically and he couldn't cope with the change in his day. We debated going back later, but we didn't want to upset him once they had calmed him down, and the doctors agreed.

That was at noon, but since I had arranged a time to meet a nurse to let me in to his room at 1 we hung out just in shock at what had just taken place. There were tears and a lot of silence, but the time passed, and we were able to get into Eli's room. It makes me feel better to be able to sort thru his things...pair outfits together and make sure stuff is in order. That's just the momma in me. Just before we were let into the room, we got to watch him going back to school with his class...all in a single-file line, and he was skipping along so happy. Things were back to normal for him. All was well in his little world, and that solidified our decision to not show up and disrupt his routine again.

We left with his room in tact...everything in order, but our hearts broken into a million bits as we drove away. There is no word in the English vocabulary that can describe how this feels. I know that this is what he needs...I just have got to learn to separate what I have believed a good mother does, and do what a good mother would do in this situation. You have this need to never leave your child...never turn your back and walk away. Yet that is exactly what I have to do for his sake. He is wired completely different...it is mind boggling, and I don't know that I will ever understand what it is that he feels and goes through.

I'm sorry it took so long to update this...

I've been waiting on a call back from his doctor to discuss whether or not Norman and I should include the visit with Eli this Friday with the appointment. We're not sure that we should see him until they get his meds more stable... This is hard because Norman hasn't seen Eli in a month. But I'll keep you posted once I get to talk that over with the doctors. Who knows what we'll end up doing. I'm going down there regardless, and Norman and I will be able to meet with the doctors together...which will be nice. I've missed him so much.

Thats all for now. Thank you so much for reading and for praying for us. ((HUGS))


Nikki said...

Oh Stacey. I'm so sorry. This one just made me tear up some. It's so hard for any of us to imagine what you are going through, much less what Eli is going through. I know this has to be heartbreaking and I honestly don't know what to say. I'm happy that you know that this is where he needs to be right now. And as hard as it is (please don't tell your mom I started a sentence with a conjuction, I can hear her now! - just kidding, I hope that made you smile...now that was a run on sentence...sorry Mrs. R!) Anywho, I am sure I speak for all of your followers when I say that you are teaching us so much with your story and Eli's story. I wish you and Norman so much happiness with this week's visit and I pray that it goes smoother and you can see Eli. Take care and be careful. (((HHHUUUGGGSSS)))

Wendy said...

I am at a loss for words. I wish I knew what to say to comfort you. I'm so sorry that your visit ended the way it did. I hope that Norman is able to see Eli this weekend. I'm sure he will be so sad to have to miss out. I just can't even imagine how you all must be feeling right now. I continue to pray for you.

Liana said...

My heart aches for you. As a mother, you just want to protect your child and when you can't do anything for them you feel so helpless. Just remember that the Lord is in control of this entire situation. He knows exactly what you are going through and He knows how to "fix" Eli. Lean on Him and He will get you through this. If you need anything just let me know. Liana

Ally said...

Oh Stace. This one has me in tears. I'm wiping them away at work hoping no one notices.
I can't imagine how hard it must have been for you to go through that.
I'm just so sorry all of this is happening and wish I had some comforting words for you.
I hope everything works out so that Norman is able to see Eli.
Please know you can call anytime.

Stacey said...

Thank you all so much for your sweet words. You guys will never know how much just knowing that you are our there thinking for us and praying for us helps. I love you girls... each of you and cherish you so much. Thank you for being such dear, dear friends. ((HUGS))