I just talked to Dr. Devinskie's nurse yesterday. She said that he recommended that we add a small dose of Zonegram once a day, another target seizure medicine. I don't like the thought of introducing her little body with more chemicals... ARUGH!!!!
I had asked if her case was presented to the surgeons board by Dr. Devinskie and she didn't know. I am not sure how exactly I feel about this "no news" but I guess I'm no better off emotionally than I was before than if she would of given me a response. I wonder... do I push it and call again on Monday to get an answer or do I leave it alone? Ohhh sometimes I just don't like being a parent... Anyways I am suposto call her back if in a week to let her know how Abbs responds. I will keep you all updated and once again, thank you all for your continued prayers!
Since this past Monday Abbs has become extremely lethargic! On Thursday night I got really scared and tried not to show it. After our nurse left she was in her stroller and never made a peep. She just sat there... staring off with her little mouth open and a bit of drool dripping out.
When she was done eating, I took her out of her stroller and loved all over her, she never even squirmed... she was so limp... I laid her on the floor for a change and got side tracked with something and then realized she was still on the floor, I went to her and she was in the same position! I didn't know what I should do... I figured that the new dose of Sabril (now over 10 days in her system) was taking it toll and the side effect of tiredness and lethargicness was bestowing its ugly face. She would respond with a smile when we talked to her, but that's it.
I took lots of photo's made a short video, let her sleep with us.... In my mind I "would" and "wouldn't" allow myself to think the un-bearable..... I know, I know.... why did I do that.... having a little one with multi-issues.... I don't know when or how long I have with her and it is times like this that God reminds me that He is in control, she is not mine and I can't control His plan for her life.
Reflecting back, it's a wake-up call for me not to become lethargic myself with spending time with her and my boys. Lately, I have wanted to spend a lot of time "alone" just doing for me with no little ones around. Oh, how I long for some quiet! Then I think, "How selfish Tamara, you are not promised tomorrow and life itself is but a vapor and then its gone!! Your a mother of an 8, 6 & 3 year old nearing the corner of 40, and life according to the worlds calculations... its almost 1/2 way over for you!"
Now, I know God holds my every breath in His hand and when He decides to take me home... I do not know... So, I'm thinking... this should be at the forefront of my every thought: Loving my Savior with all my heart, mind and soul... Loving and enjoying my husband and children to the fullest because I know not when I will have that last hug, that last kiss, that last conversation or that last laugh, cry and so on! You know that old sang, "Life's too short" WELL IT IS!
By the by; Abbs is much more responsive and back to her ol' self again. I think God was just trying to get my attention and the juices flowing so He quickly jump started my heart with Abbs being lethargic!
"Thank you Father for being so close and so involved in my life... Thank you for the lesson learned and I pray I never forget to walk around with my eyes wide open and heart exposed to all that you desire me to know and learn, your little wandering lamb, Tam