I started to post this comment, then decided to share it, Heidi and Tiffany's comments really touched me:
You two really overwhelm me, in a great way! You both have more than your fair share of trials right now, I can't believe you have time to worry about mine. Thanks for the love and support!! Tiffany, a body cast AGAIN? Was it the same hip as before? How big is she now? That must make lifting her nearly impossible. And heel cords also? Let me know how she's doing with all that, we're lucky Monte hasn't had to do any of that. We'll keep you in our prayers also. I wish I was there to take you out to a movie again, of course that did backfire on us last time. We accidentally picked "Finding Neverland," then sobbed through it. So much for cheering you up! He's on Keppra right now, they'll probably add Lamictal later if these seizures keep breaking through.
Heidi, that really does make us feel a bit not so alone out here, we drive through Fort Leonard all the time, it has the nicest McDonalds with the cleanest restroom and best Redbox. What does your sister do out here? We'll have to coordinate sometime? We love your family, they never fail to help us feel loved and cared for, even though they hardly get to spend time with us! Wow, Aunt Arva is wonderful, we'll keep that in mind next time... :)
I love that both your dad and his friend both put Monte's name in the temple. It is sometimes a very tangible feeling when we have our names in the temple, I can almost feel a strengthening and lifting of our spirits. Plus on Sunday I was playing hymns during family prayer and Monte just started laughing and laughing...I'm not sure what he was seeing or feeling, but I know that he is not always simply with mere mortals on this earth.
I did come home a bit sad and overwhelmed last week, I appreciate all of you posting comments, sending texts, and checking in on us. It's hard when you can't "fix" your child's health problems, and no one else can either. We usually keep in good spirits, I'm not sure why last week was so much harder for me emotionally...but it was. What I'm trying to say is, thanks for letting me be honest about my feelings and not have to pretend that everything is ok, just this once.
He had two seizures more on Sunday morning, I kept him home from Church *just in case*, and it's good that I did. Of course, that is now two weeks in a row that I've missed church, and isn't that weird and terrible feeling? You'll have to share all of your vast spiritual knowledge and catch me up. We did have the missionaries over for dinner (they didn't know, and I felt bad standing them up), and they helped fill that void, of course, we also talked a lot about false doctrine also, so that was funny.
Enough rambling!
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7 comments:
Aww, Claire, you are amazing. I had forgotten about that movie we went to the last time she had hip surgery :). I'm staying away from sad movies this time around. Kathryn had surgery on the other hip this time. She is 85 pounds now (uncasted), and a whole lot spunkier. Because she had the heel cord lengthening too, the cast is on both sides, so it takes two people to lift her. Gratefully, we got a wheelchair that will fit her yesterday, so she's a little happier (as are we) now that we can move her to more places than just the bed or the recliner. Anyway, it'll be an interesting month - but "this too shall pass."
Kathryn's on Keppra too! We've really loved this med - for the most part it has controlled the seizures without sedating her. It is scary to add/change seizure meds, so I hope that Monte's will stop and things will go more smoothly for you all. Know that we love you, and are hoping for the best. Thanks for your friendship - know that the support goes both ways! :)
Do they use Keppra for the focal clonic seizures? It's seems Ty always has to sacrifice alertness when on seizure meds.
Wow, and I thought I was feeling a bit cooped up, you must be going crazy. I'm so sorry you had to go through this again, and Katheryn too! Is she in a lot of pain? Is she pretty bugged by the cast?
What kind of wheelchair did you get? Also, please elaborate on "Spunkier."
Monte's decided not to participate in a lot of things he used to, you know, stretching, therapy, being nice to mom, ect. It would make me feel better to hear other kids do it too!
Our new Neurologist is an Epileptologist at St. Louis Children's and she's amazing. She actually reads all of Monte's EEG's, and she's the one who determined that NONE of Monte's other meds last year were doing anything for his Seizures. He was on Phenobarbital, Trileptal, and Topomax. Since being on Keppra, we've been able to slowly wean him off all of the other medications over the last year, with no break through seizures. It does treat both Tonic Clonic and Focal Seizures, and best of all, it does not hamper his cognitive function. Plus, it's processed through the kidneys, not liver, so we have much fewer side effects, as in, none. We've been really happy with it.
I will check with a different neurologist at PCMC - did you have one you liked? Ours always seems to have a rod up his, erm, spine.
We mostly saw Dr. Thompson, who we did like, personality wise, and thought did fine...until we had Dr. Bertrand in St. Louis, who opened our eyes to the possibilities of a world without seizures and an awake, happy, cognitively and physically advanced Monte. Tiffany, who do you see?
Van Orman. I'm sure he's very cerebral, just not all that warm and fuzzy - y'know? And very, very traditional.
I'm wondering if your doc out there has a recommendation of one out here?
I love Keppra for that exact reason: there is little to no effect on her cognitive development. She has come alive since being weaned off of Tegretol. Not to mention, the Tegretol was killing her liver. We see Dr. Filloux, who I actually like. We also see Sheri Combe, who knows us well.
Kathryn has done much better the past few days. She's bored with the cast, and wants to be entertained constantly, but I can't really blame her. She's fallen in love with puzzles. I'm looking forward to July 13th, when she gets the cast off, but then PT will start and I'm not looking forward to that. She is spunkier - she's incredibly vocal, and not afraid to let me know if she's not happy. I think that most kids go through the stage where they're sick of life (stretching, therapy, etc..), and they take it out on us. Kathryn went through a long hitting and biting stage...and gratefully she's past it for the most part. Now she yells and pushes things away when she's mad. Have patience, and keep up the hard work. This too shall pass! How's Monte fairing these days? How are you?
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