2 notes!

     So you may have noticed that I haven't blogged in quite some time. I do much better in retrospect rather than during the midst of the storm. I guess I need time to digest all that takes place before divulging all my feelings to others. We have been waiting for many many test back since July if you recall. Most were normal but a couple things were a bit strange! The genetics we are in involved in now are so complicated so I will give you the short form. Makayla has a high level of lactic acid in her blood, what does it mean exactly, I don't know. She also has a high ratio of VLCFA of the C22/C26.     ( told ya it was complicated) So we have done more blood work, another 6 tubes! ( that's right 12 tubes from July just wasn't enough!) They are rechecking both levels again to make sure it wasn't just a fluke, but also testing for the related gene disorders and diseases. Makayla fits a lot of the profile of a number of disorders linked to the POLG gene sequence ( Alpers disease) as well as rare mitochondrial disorders ( Batten Disease). Keeping in mind that this is not the first time something has been strange in the midst of blood and urine testing, we wait patiently for what could be life altering news. To top off the stress of this torturing wait next week Makayla will undergo her second sedated MRI and an Echocardiogram at Mcmaster. (Your prayers are always appreciated.) And because that's just not bad enough she is way over due for new splints which means new casts which means an hour of torture for both her and I. ( I curse at the very thought.), ( no not out loud mother)!!!

      However on a second note!! I have been in contact with someone who specializes in fatty acid supplementation! Through a strange twist of fate or by the awesome hand of God, I received his brochure and decided to give him a call. he seemed very knowledgeable on the subject to the point of describing many of the symptoms of Makayla and even the background of our family. ( I was really intrigued after speaking with him and set out on a mission to immediately get every supplement he recommended!) He did this all for free might I add! In the meantime I also had started dealing with depression and exhaustion, so I also started taking what he suggested. I can honestly say that it has been almost 3 weeks, and I feel so much better, but better yet Makayla is doing really well. In just the last 4 days she has begun to say 'Mama', again, and sign please, yes, and more again!!! She also just seems more with it, following some direction and taking turns with me! She is also clapping like a maniac again ( something we hadn't seen in over a year!) AWESOME!!!! We played a funny game we made up today and for the first time she totally understood it and we both laughed endlessly over taking turns! ( when I ask her what a baby says she will say 'googoogaga', the greatest sound!) Her babbling is much more creative with syllables, and her ability to sit and play in one area is lasting more than 4.6 seconds! For the first time in what feels like forever I feel truly HOPEFUL regardless of anything else. That;s it for now folks, stay tuned!!