About Us

My photo
Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Results from Vandy appointments

I guess I should update since I kind of left things on a sour note the other day. First of all, thank you so much for all the prayers. I can definitely tell that we have been basking in His presence and I am confident that it's from all the diligent and faithful prayer warriors interceding for us!
Getting Maggie set up.  She was letting us know she was still hungry!!
Wednesday was a fresh new day. Even though I had to wake her at 3:45 am for a feed, she went back to sleep and had a great night of sleep. She was a gem when she woke up...took her am meds like a champ (has been gagging, etc. as of late with those). She managed to get all the way to the hospital and waited until about 5 minutes before the test to remind us that she hadn't eaten. We made sure my mom held her to try to comfort her. Otherwise I would just be taunting her, knowing the good stuff was there but she couldn't have it. The great thing is she had worked up an appetite and ate up super for the study. It was pretty neat to see her little tongue pull the food/barium in and see the mechanisms of her throat help it travel down her esophagus. All was well! She was fine with that. And she sure was ready to finish her avocado and her bottle afterwards.
She got a little catnap while we hung out in the hospital cafeteria. I woke her from that so she would still be tired for her Sleep study. We headed up to that. She was a little fussy as we started to get her hooked up, but as soon as I wrapped her in her swaddle sack she was content and went into a very peaceful sleep! Couldn't have asked for it all to go any smoothly. Once that was done, back to the cafeteria to kill some more time. Daddy also met up with us. Maggie had such sweet smiles when she got the chance to snuggle with Daddy.
All too familiar of a picture, but she has a lot more hair this time around!
As she started to get sleepy, I put her in the sling carrier and up we went to our neurology appointment. That couldn't have gone much better than I could have wished for (except  for him to say nothing is wrong at all anymore-maybe someday!). After reviewing the EEG he did comment that it looked like a different child than what they were used to seeing for her. It is still considered abnormal but we know that. Basically, anyone with epilepsy shows these random spikey things throughout any given EEG. Hers had that still, which is to be expected.  But, the really nice part is that there were not any seizures recorded. Given the previous nonclinical (not seen by looking at her-only detected on EEG) seizures from previous EEGs, this was great news!  With all her eye flutterings and other things going on, for them to not see any, was great.  He even said she had some good sleep spindles in there, for whatever that's worth!  He is still pushing for the exome sequencing, as she could be an excellent candidate to help others down the road.  Our neurologist actually spends a lot of time in the lab and not much in the clinic.  He also spoke with us about another research project where they can take a very small portion of skin and grow it into stem cells.  Then they can see how it reacts with various neurons, etc.  Quite interesting and might be something we do next time she is under anesthesia.  He could also take a sample from Shawn and me and study the variations.  Though our neurologist said we may not get to name a new disease, we already decided it will be "Mags syndrome".  However the variables they probably won't take into account are her therapy and diet changes.  But, I'm not too quiet (I know...hard to believe).  So, if other parents have a child with similar symptoms, have no fear, I will tell them what has helped her the most!  (in combination with the medicines, of course)
Oh...another exciting things is that we get to be completely done with one of the meds.  We have gradually been weaning it and now we get to say farewell to the Trileptal!!!  1 anti-convulsant down, 3 to go...In a couple of weeks, we will begin the wean from the Clonazepam, which I anticipate to be the most difficult wean.  It's a tablet, so there are only so many increments we can make.  It is also one that her body easily could have become resistant too, but dependent on.  So, I expect things to get a little worse before they get better, but we'll see how it goes here in a couple of weeks.
I think anxiety was playing a big role in my emotions leading up to the appointments.  Knowing she was not doing well from a clinical perspective and anticipating the worst with the EEG.  Praise God that I was pleasantly surprised!!  In regards to her growth, I am not terribly worried.  Yes, I am concerned, but it completely makes sense to me.  First of all, throwing up for 3 weeks, not only did she not gain, but she also lost weight, so that threw us off the curve right away.  She actually had been gaining fairly decently after that, but the last month, not so much.  Given all the other variables the past month, once again, no surprise to me.  Plus, we delayed starting solids for a little bit.  Most babies start at 4-6 months, and we just started at 7 1/2 months, so that explains a lot too.  I think the concern from the GI doctor about her weight is good, because I have now created a game plan and am motivated to implement a very intentional progression of solids into her diet.  Due to continued constipation, we are backing off the bananas and introduced pears today.  Hopefully they will help get things moving better and then we will keep adding in a couple of days.
In a nutshell, appointments went well and Maggie was on her best behavior.  We are taking her month 7 off the record, given it wasn't that pleasant, and we are going to start moving forward again, now that she is 8 months old!

No comments:

Post a Comment