More news....

I know most of you follow my updates on Facebook, but I need to write on here too. Writing on here if like therapy to me and some things I write on here cannot be written on Facebook. I've had many family members tell me that I "whine" too much on there so I've decided I'll "whine" on here and they won't have to see it.

Two days ago Zion woke up with a pretty nasty cough. As soon as he coughed I knew he was starting to get croup. Z has had croup 5 times so I know the second he has it. He had a slight fever that day, but otherwise was acting pretty normal. An amazing friend, John Marsee and his family, stopped by with their new pony and carriage to take Z for a ride. First I took him for a ride and he was so excited and having such a good time, then I had to leave to Paul took him for a ride. When I got back Paul had taken Z's AFOs and TLSO off. I knew something was up because we don't just take those things off in the yard. When I got out of the car Paul called me over and said that Zion was acting really strange. Like spacing out. Which is not at all like him. The only time he stops talking and spaces out is when he's in front of the tv. So I knew something was wrong. I took him right inside and put his pulse ox on to see how he was breathing because I heard him start breathing very weird. His sats were completely fine. We moved the mattress into the living room, because whenever Z is sick we do this so we can all sleep together, and I kept on eye on him all night. He was completely fine throughout the night. The next morning we went to my mammaw's house and on the way back we were listening to music and like always, Z was singing along or telling me every SINGLE thing we passed that he saw :) and then it was just quiet. I knew something was wrong. I looked back and his expression was just blank. His eyes looked so weird and he was pale. I started yelling his name to see if he'd respond and he didn't until about 3 or 4 times. He finally came to and he said he felt strange. :( I couldn't figure it out. I went home and called the dr. They said to take him directly into the ER to see if he was having seizures. Seizures?? No way! That thought had never even entered my mind. I called Paul at work and told him what was going on and he came home so we could take him together. Once we got to the ER and told the dr what was going on he said it definitely sounds like he's having partial seizures. I wasn't exactly sure what to think. I'm not sure if I was in shock or just didn't want to believe him. I held it together until I went outside to call my mom. As soon as she answered I broke down. How can this be happening?? First, my sweet baby boy is diagnosed with this disgusting thing called SMA and THEN he starts having seizures?? Not even related to SMA?? How can this poor boy's body go through anything else?? Why is this happening?? I cried when I talked to my mom and that was it. I haven't cried about it since. It still just doesn't seem real. I can't grasp the concept that my son now has seizures.  While we were in the ER they did a CT scan, EKG and blood work to make sure nothing had been damaged during the seizures. Thankfully nothing was. We meet with a neurologist on Monday and I hope to have more answers. Today he started a seizure medication, Keppra. I just want to scream! Why do bad things keep happening to us?? I wouldn't even care if it was happening to me, but why in the world does my baby have to keep enduring things like this?! I just hate it and what's worse is that there's nothing I can do about it. This just makes me realize how quickly things can change and that we really need to just cherish our moments together. I will update you as I get answers. Thank you all for your prayers and support. It really means a lot to us. Please keep them coming! <3

Z's 1st softball game!

Tonight was Zion's 1st softball game. :) It was one of the saddest, cutest, most happiest moments we've had in a long time. Here lately I've been pretty down about our situation, but I'm trying to stay positive and tonight just made that easier. At first, I was totally fine. Then he lined up with his team, other special needs children, to sing the national anthem and I just lost it. It broke my heart. All those feelings of "I cannot believe this." came rushing back. As much as I try to push those feelings away, I know they will never leave, but I also know that I can handle them differently. I chose right then and there to be more positive on a daily basis, to just appreciate the time I get with my sweet boy and just enjoy life. We have only been to one other place where there were other kids like Zion. That was the OKI Chapter Walk and Roll in April. We saw maybe 2 kids his age in a wheelchair and we didn't really meet very many people. We needed tonight. Of course we talk to other SMA families on Facebook and we see pictures of kids in wheelchairs and Zion wants to look at them all the time, but we've never really interacted with anyone like this. It was relieving. To meet, actually meet, other families like us. Around our area that can relate to us. As much as I love our SMA community on Facebook, there's just something so great actually talking face to face with someone in the same situation. Zion met a little boy named Joey who was also in a wheelchair. It was the cutest thing. It made me so happy to see him being able to play with other kids. Like he does. In our family he's kind of left out because he's the only one in a wheelchair. The other kids don't play with him like they do each other. So tonight was just......amazing. A year ago I would've told you that SMA crushed our dreams of watching Z play tball, or take swimming lessons, but today I know that SMA can't crush anything if you don't let it. Tonight we saw our baby play his first tball game and in 2 weeks he will start swimming lessons. SMA won't ruin our lives. We just have to adjust our dreams a little :)

                                                                 
                                                Z & Joey giving high fives after the game! :)