It might be a bit disastrous, as I am sure we all think things we would never say, but somethings must be easier too, right?
I didn't realize until just now that I didn't update the blog after Lucas' IEP. I guess I just assumed everyone could read my thoughts and know that it went well and he will be attending the school for which we were hoping! He will finish his regular preschool year next month, have a two week break and then return for the month of June for summer school. He begins official full-day kindergarten in August. I can hardly believe it. You may find it hard to believe that the length of a full school day will be the longest amount of time that I will have ever been apart from him except when Eliana was born, which only counts if you include the over night hours he was sleeping. ;) I love to be with him and am sure I will miss him terribly. That is months from now though, so I won't linger on that point (until August anyway!).
I have had a bit of an emotionally rough time the past few weeks. I guess really only the past two weeks, but it's been a greater struggle as I was up with one or both kids for several nights about two months ago, but never caught up on my sleep (imagine that!) and have been battling my body since with pain that it is determined to have me and I am determined to not have. (I am not winning this one, not yet anyway.) Blah blah blah... The rough emotions spilling over my loosened safety net of "I must carry on" began Tuesday before last in the Schnucks (local supermarket) parking lot as I was about to venture into the store with both kids. I got a call back from the nurse in Dr. Burris' office informing me that Dr. Burris didn't want to increase the Keppra before Lucas was seen by the consulting neurologist and that we should not only consider our upcoming appointment with Dr. R as a consult, but also as an interview because Dr. Burris (who I love!) is leaving the practice to move to Texas and teach at Baylor Med School. While I am delighted for him and always trust that God will take care of Lucas (as He has proved time and time again), I am also quite brokenhearted and could not stop myself from crying not only in my car, but as I walked into the store, and at least once in the store. I have cried more since then to think of it.
Our appointment last Monday with Dr. R was fine. She is kind and knowledgeable. She suggested we continue to increase the Keppra, as Dr. Burris would have also. She also recommended that we get a new MRI as there can be greater development after the age of two. I don't know how this would help us, but it will interesting. She also has connections with two different research groups specifically focused on brain malformations. Sending Lucas' information to one or both groups wouldn't really effect us. They may or may not contact us with any findings. They may not have anything worth reporting for 25 years, if ever. We still like the idea of contributing to the research though. I expressed concerns/desires about Lucas' neuro care saying that topping my list is having a doctor who we feel is "here" for us. I don't want to call looking for our doc and get whoever is on call, someone who doesn't know our boy, someone I don't trust. We all too recently were given advice by one of Dr. Burris' partners while he was out of town (the only time he doesn't take his own calls) and the partner's advice sent Lucas into clusters of 100+ seizures. I do NOT want to have this scenario repeated, ever. Dr. R said that she takes all her own calls M-F business hours. She may not call back until 9pm, but she will call same day. After business hours and on weekends, we would get whoever is on call. This isn't ideal, but it's certainly better than I expected. She suggested the use of a new website another family she knows created to track and graph seizures too. There is also an app for the iphone.
When we came home Monday afternoon, Marc felt great about Dr. R and was super pumped about the website/app. I was a bit apprehensive about the former and severely about the latter. I am a pencil and paper gal. Looking at the inter-webs is not my fancy. Trying this new app and website is causing me uber stress. Marc doesn't get that I don't get it. I'm not an idiot, my brain just isn't wired that way. I know I'm the minority, that my grandma in her 80s might be more net-savvy than me, but that doesn't bother me. I can see it on paper. I don't see it on a screen... So this is a work in (very little) progress. I tried calling Dr. R Tuesday and got a menu with no likable options, but left a message on a machine somewhere in the neuro dept. Tried again Wednesday and managed a person, who said she'd pass a long a message. Thursday, before I had opportunity to call, I got a call to schedule the MRI and asked that woman if she could get a message to Dr. R. I finally got a call back late the afternoon. Really building my confidence here. :( Meanwhile, I am trying the app that makes no sense, Lucas is having I don't know how many seizures and not napping and crying through about 40% of his waking hours. Eliana is also not getting good naps so she follows me around frequently crying. With the nice weather and open windows, I am surprised my neighbors haven't called the cops for the noise disturbance. :)
I think I should stop rambling. I am tired and feeling the stress a bit more, which is probably obvious. I still have nothing but love and grace for my beloved children, but my house and my dear husband have not been getting near as much as they should. :/ We'll get through it. We always do. :)
For now, my dinner and my daughter and my son are crying out to me and I have certainly rambled on here for far too long. I just have one last thing to add (if you've managed to hold on through the muck of my complaints). Lucas' MRI is scheduled for this coming Monday, April 9th. They will have to sedate him for the procedure to ensure he is still. It takes about an hour in the MRI machine. We will have to arrive at 0645 and the MRI is scheduled for an hour later. We will then have to wait for him to wake and be convincingly stable. I am not certain how long we will be there. We will either need to have Eliana not there or have another adult to help occupy her at certain times. My dad has offered his help, but it looks like it might just be the two of us as Marc may not be coming because of a busy morning at work. Regardless, We would/do always appreciate your prayers.
I have to stop now. Really. Thank you for tolerating such posts as this. I may go back later and change a few things, but maybe not. Love to you all. God is good and His grace is always more than enough. I pray that you know Him and His love and grace, that you rely on Him completely and that you are filled with his peace even if you are surrounded by screaming children and deadlines. :) Blessings, beloveds!
