Neuro Update

Hey friends,
A lot of you know that we had a neurologist appointment this week and it went very well! I was pretty nervous about it... without going into a ton of detail, i pretty much fought tooth and nail for this appointment. Darby had gotten lost in the UCLA system and it had almost been A YEAR since he was seen last. His neurologist wanted to see him every 3-4 months... so this amount of time was ridiculous. I really stuck my neck out there and threw out some 'tempered, yet angry' emails and finally got this appointment. So for some reason, i felt a lot of pressure for it to be a good one.

I went alone that day, which was not my first choice. But it was necessary... Jason had huge projects at work he needed to be at and my mom has started working part time and her time is much more precious! I figured this appointment wasn't big enough to call in the cavalry for. (we have a neurosurgery appt coming soon, and i'm saving the request card for them... i'm getting jason to come with me!)

We didn't know what to expect but we knew we just wanted to walk out of there with new scripts for his medications and maybe a couple fears relieved about darby's development... and thats what we got! She encouraged me to keep fighting the system... keep making phone calls and stern ones! She said Darby did get lost in the system and told me I did a good job getting this appointment. She was able to give me new scripts for his meds. He is still good on doses, since he's only gained like 1-2 pounds in the last year. Our next appointment we are hoping to bump up the Keppra because of weight gain! The things we get excited about now are rather silly :o)

He's going to have another EEG soon, totally routine. Its been a year since his last and she wants to see whats going on in there. We'll get to do a 8 hour out-patient one (yay? ;oP )

We talked about whether he would be able to come on Zonagran anytime soon... and she decided to do it now. I don't think she liked how he still hadn't gained weight in so long (a side effect of the medication) and felt that since we are doing an EEG soon, we could ween him now and see what the EEG has to say about it. In her opinion, which of course is just an opinion, Darby's infantile spasms were caused by the hydrocephalus in his brain and the real need for a shunt. He responded SO well to medication for it and has done so well since the shunt was placed. She feels that since its all under control, that weening should be safe. Of course, if something bad happens, we'll take care of it. You can't say something will NEVER happen again, but she feels his chances are pretty slim at this point. Does this all make sense? Yeah, its late at night when i'm writing this... my apologies.

She was happy to see his physical tone looking good... not super happy that he had started making words and then stopped and hasn't spoken much since. We're going to start weening his medication soon, but Jason and I both feel like we want the appointment for the EEG in place before we start. Our faith in the 'system' as it were, is very lacking. The last 6 months has been SOOOOO rough on me, regarding referrals and appointments. In a lot of ways, I believe when I see it. I can't trust any person or system anymore. I can't get anyone to listen to me or even believe me some days... and it gives me relief to realize that God does have the control. Sure, I still have to fight hard for the best things for my son. But when i'm in tears and feel completely out of control, i can take comfort knowing that i'm just that... out of control. God's going to move things when He wants to and He's good... so He'll do whats best and whats perfect for Darby. He loves darb too, more than me.

If you are wondering what you could pray for... I'd say these things:
-patience and persistence for me and darby's healthcare system- we are working so so so hard to still try to get darby's therapies under insurance. Dozens of angry phone calls later ( i honestly try to be the nicest angry person EVER. its such an interesting place to be in... a Christian witness of a Christ like attitude and yet a persistent mom who loves her son and needs to go to bat for him constantly?), and we got the referrals today! Only problem is that they are all completely a mess... an absolute mess. They make no sense... and its obvious that our physican system has NO IDEA of what's going on. Sigh... I'm very thankful for helpful people these days. One of those people is Cheryl... the manager at Progressive Steps. She is now going to bat for me since the doctor's office thinks I'm insane or something and doesn't believe me when i tell them anything. Her authority as the provider of the therapy care is hopefully going to get some things moving!? Lets pray it works! I'm also trying to get a routine for the UCLA system established as well. Once you get a referral to get an appointment, it takes 2-3 months to be seen... well, when the doctor wants to seen your son that often, you need your referrals practically back to back. I tried explaining this to my doctor's office yesterday. Once again, they don't believe me and are really confused about what I want. I'm literally 2 bad phone calls away from the funny farm picking me up... you think i'm kidding? just ask jason... he sees me after these phone calls... its not pretty.

-darby medication weening- of course we're nervous about this! all you hear is that its SOOOO hard to get the infantile spasms under control. now they are, and we are so scared to have them flare up again and possibly have to go through the process of having to control them again. But we are also really excited to get him off a medication! (FYI- darby is on Keppra still and will be on this medication for the rest of his life. we're okay with this.) He might actually be hungry! I'm hoping for a little more pudge on him  :o)

-darby's future health- there are diseases that are still lingering out there that he could develop. I pray that he stays healthy and keeps growing well. We were also reminded by his neurologist that as darby gets older, the chances of shunt issues (replacement, complications, infections, whatever) are going to increase. So we can't get complacent... we need to be watchful of his fevers, headaches, nausea... all symptoms of shunt issues. 

-darby's development- he's crawling! yay! he's also been doing a LOT of voice inflections! lots of yelling and testing out his voice box. Not angry necessarily, but he is realizing he has a voice and he likes it. He likes to 'complain' to everyone he can :o) that boy is drama. Now that he is so consistently crawling so well, his PT has started to focus much harder on his standing and hopefully his walking. By his next birthday we are hoping he will be standing on his own, possibly even taking his hands away from the couch or our hands. We are not expecting him to walk by then, since its only 4-5 months from now! But we are hopeful that he will really be progressing well.

Lastly, if you are reading this and you pray for Darby, thank you. There is no way Jason and I could ever thank everyone who has ever prayed for us and supported us. Thank you thank you thank you. We really truly appreciate it. We're beyond humbled by it. It has worked, always does work, and we always want it!

I hope this all made sense... i kind of took one of my sleep aids (got to love melatonin!) before I wrote this and i'm not entirely sure I'm making sense right now. Grammatically, I'm SURE i'm not. So... don't judge.
:o)