Wednesday, September 18, 2013

Starting to get a little crazy again...

So...We're kind of in the same spot since my last blog post but I feel like I should update on somethings, since I'm having a hard time and its coming through in my blog posts...

The last weeks have been kind of scary. 1 week ago we rushed Jaxson into the emergency room - He made a wierd noise in his sleep,  he was having trouble breathing and his heart rate was 200bpm. He was twitching (not tremoring) and his temperature had risen to 104. By the time we got to the hospital, all but his temp were normal and they were wondering if he had a different kind of seizure since he was not very aware when I took his temp at home and took his vitals...(I do get to use my vet tech skills as a mom!)

Jokes aside, Jaxson has been falling flat on his face and he has not tried to catch himself for the last 5 days. Although some days he has trouble and he falls, he usually can always catch himself -This is called your protective response reflex, but this is so different. One day he was standing in the middle of the floor with his teddy bear and then he just fell head first into the floor, like something had pushed him. He was aware, so I don't know if this was seizure like activity but it seems convincing considering the previous episode. He has proceeded to toppling off the couch onto his face, Bruises and 2 bloody noses later...It just hasn't stopped.... Temperatures are slightly higher than normal, around the high 101's.

Yesterday at PT, our therapist pointed out that she thought he had slight facial drooping on the left side of his mouth. Though I looked when she told me, I hadn't noticed it, and felt it was really minor, maybe it was always there and we never noticed? We kept an eye on him, but when we woke up this morning, It was far more pronounced. Although it is mild, he has a top lip droop - mostly visible when he smiles or opens his mouth. He does not have a droop with any other part of his face, and in fact his left sided weakness activities were amazing at PT yesterday.            

 So luckily -We had an appointment with our Pedi this morning .We recently (4 days ago) started a new anti seizure medication for his falling and the spell that happened on Sunday in hopes that we can get Jaxson on a more tolerated medicine and dose and see if this this be a result of the seizures? its possible. However, Our doctor feels like this is most likely "whatever is going on with jaxson" neurologically is progressing. The part of the brain which controls the cranial nerve that would effect just the top lip is such a tiny small spot, so its unlikely the new medication would be cause for this - however we do have a phone call into Boston right now.... We had no closure answers but 1,000 more questions.. as always! They have been discussing another MRI, I really hope we don't have to do that again. looks like things are progressing, and its just scary - How far will this progress? What else will be effected? Will the facial paralysis stop here? go away?....So I'm a little worried...Okay, A LOT worried!

(On a back note we got a referral for Genetics and Rheumatology ASAP)


  1. Ohhh sweet Liz, Josh and baby Jax .... I am so glad that you have updated your blog as you were right it was very hard to try to follow on fb how the little man was doing. I do not have any words to make things easier or better all I have is love. Please know that we think of you all often <3 xoxoxox
    Ashley & Arya

  2. I just read from beginning to these most recent blog. Honey I had no idea you going through this much! I'm sending so much love and strength and positive thoughts your way. You're all so strong in what you've been dealing. I'm paying for answers and insight for you. Thinking of you all. <3 Lori

  3. I love you momma! Jaxson too. I may be closer next year - I've been considering moving back. You and Jax (Josh too) are so strong. Keep doing what you're doibg momma. And let me know about scheduling weekly video chats :-)

  4. Thank you guys so much for your love and support. It has been hard but we are so lucky! Things can always get worse and I really hope they don't...We get his blood drawn tomorrow to check for levels, I don't know why?? But...I'll keep you posted. Thank you for thinking of Jax, It means the world to me.

  5. Liz you know when he pulls through all of this ... there is going to be no stopping him right? He has shown to be a true fighter with you and Josh (any many others) right by his side every single step of the way. I watch as you are always trying to be positive even in the crappiest of situations... a true inspiration ... I believe that is one of the essential keys to treatment! A positive attitude means more than most think. You are an awesome Momma and Josh has to be an incredible Dad, Jax is one lucky little man and I have a feeling he sure knows it. Love to each of you! Extra kisses for Jax.