More questions than answers

What an emotionally and physically tiring day! We went to see a neurologist at Texas Children's today, upon the recommendation of Dr. Hall. We wait for 6 months for this appointment and we feel like we got a lot out of today. But as we are finding our more and more with Jackson, we got more questions and not a lot more answers. Dr. Rodriguez is an amazing doctor and I can tell you I admire her and believe she will be a great guide as we continue this journey.

So what did she say, well, here it goes. She believes that Jackson possibly has Spinal Muscle Atrophy (SMA)----let me warn you before you go goggling, if this is a true diagnosis for Jackson, he does NOT have one of the more severe forms----that being said, he would still be diagnosised as having AMC, it just happens to also fall under the Muscular Dystrophy umbrella too. That could mean a number of things, some I know and others I still don't, but the good news for us is that there is another mommy to an AMCer, who also has SMA, so she and I will talk soon.

So for now, Dr. Rodriguez is ordering a MRI on Jackson's brain and spine to see if she can see any changes from the originals in the NICU and see if there was possibly any stroke(s) in utero. She has also referred us to a Physical Medicine doctor at TXCH and to the MD clinic there. All of these things will take time and we may not get into the MD clinic for 6 months - a year. Once we go there, we may have a blood test to check for SMA, nerve conductivity test, and/or EMG test. All these things together will give us a clearer picture of what the future may or may not hold. But for the most part none of this will change our plan of treatment or therapies.

One of the highest points of today was Dr. Rodriguez said "Keep doing what you are doing, it's working". So we keep chugging along on this journey with our little mystery miracle.