A huge change...

I know it's been forever since I last blogged, but this year has already been so crazy. It all started this past fall when it seemed like Zion just would've eat anything. I would make him what he asked for and he wouldn't eat. We'd offer to go out for dinner and he wouldn't be hungry. So when we went to Cincinnati the beginning of Oct the dietician said that if he didn't improve within 2 weeks to call her and we'd discuss our options. I asked what those options were and she said pretty much just a g-tube. I think my heart might've stopped for a split second. I knew he would need this someday, but it just seemed like this was all happening too fast. Way faster than we thought it would. Within a few weeks he seemed to get a little better. For about a week and then he went downhill again. He got sick over Christmas and he lost 2lbs in less than a week. We knew we needed to do something. Trying to get him to eat just wasn't doing enough anymore. I called Cincinnati.....and called Cincinnati.....and called!! No one would return my phone calls. Very frustrating. I FINALLY got ahold of a nurse that could get me the nurse of the dr I needed to talk to. Voicemail....left a message....2 days later and still no call. I was getting really mad now. Zion was to the point where he wasn't functioning. And when I say that I am not exaggerating at all. He could no longer crawl and wasn't even able to sit up unassisted anymore. I left voicemail after voicemail on anyone I could think of's phone and finally a nurse called me back. She said she will email the dr and get back to me. Omg...She actually got back to me the same day and said she wants us to get there asap so we can assess him and then we'll come back home, 3 1/2 hrs back, and then talk about what we need to do. Uh...no. We aren't doing that. We wanted something done now before he loses more abilities. They obviously weren't doing what needed to be done so I got ahold of our pediatrician and asked her if she could get us into Riley Children's Hospital, only 1 hr away. She called me within minutes and said the dr said to take him to the ER and be prepared to be there til at least Tuesday (this was a Friday). We packed our bags and said bye to Zoe :( My grandma is amazing and always keeps her when we have hospital stays/drs appts. We got to Riley's ER and we're there for a few hours before they told us we were ready to go to a room. Loooooong story short (kind of..haha) they admitted him for chronic respiratory failure and failure to thrive. They immediately put him on fluids and started getting surgery involved because g-tube was definitely getting put in this stay. Saturday they told us that the surgery was scheduled for Monday morning at 7:30am. I knew this was going to happen this stay, but once I heard surgery was scheduled my heart sank. I didn't want to go through this....I didn't want my baby to go through this! What other choice did we have?? None. It was this or he would continue to go downhill. So of course, we agreed. The surgery went smooth and quick. Way quicker than I thought it would be. The recovery was another thing. It hurt me so bad to see how much pain he was in. He couldn't sit up, he couldn't cough, just touching his stomach made him scream in pain. :'( 2 days after surgery Zion wouldn't go to the bathroom. Nothing. No pee, no poop. Great...something is not right. They put him back on fluids and more miralax and nothing was happening. Anyway! They did an ultrasound, another ultrasound, catheter, and finally he started to go, but was in a lot of pain. Then they did a urine sample and discovered that he had a urinary tract infection. :( Poor thing. They started medicating him for that along with other things, like his eye that just started breaking out into hives the day after we got there. So weird. We saw the eye dr for that and they couldn't figure out what was wrong. So anyway, we finally busted out of there on Friday! It seemed like we were there a whole lot longer than one week! BUT he is doing great. Other than a little pain still. He's tolerating the feeds and is even wanting to help during them. :) He's such a trooper and I'm such a proud mama! Even though I would rather none of this had to happen, I'm glad we did it because he seems to be getting back to himself. :)

It's been awhile...

It's been awhile since I last updated so I thought I'd go ahead and get some therapy tonight. :)

So since I last blogged two huge things have happened. We got into a car accident that totaled our van. :( We were very lucky to walk away with only a few minor injuries. We were all taken to the ER, but were only there for a few hours and got to go home to recover. Poor Zoe had a black eye, Zion had a scratch on his face and his carseat had flown to the other side, it WAS strapped in, I swear! Paul thought he had broken his arm and possibly his leg, but thankfully they were just sprained, and I had a face and liver contusion, bruised from head to toe. Here is a pic:

With the help of some amazing in-laws, we got another van last night! Thank goodness. It was a rough few weeks without a van to be able to transport Zion in his wheelchair. Thankfully, that is all behind us.

Today we went to Cincinnati to find out if Z needs surgery for his scoliosis and/or Chiari malformation. Ortho said he didn't think he should have the surgery on his back quite yet. He wants to wait til the curvature gets a little worse. So when he's about 4 or 5 he says. That was GREAT news!
Then we went to see neurosurgery....he couldn't tell us if he needed to operate until he reviews his very first MRI that was done of his complete spine when he was 16mo old, to see if he has an excess of spinal fluid. If he does they will operate right away. Hopefully that will show that everything is ok. If everything is fine we follow up with him in a year to see if it has gotten worse. So it's not terrible news, but definitely not the news we wanted. I wanted to hear that everything was fine and my baby does not need surgery on his brain. :'(  

I just feel so overwhelmed. Today gave me some relief, but not what I needed. I need something to go right. I would like something that is this major to just go right for us. I can't keep hearing bad news. Emotionally and physically I just cannot keep doing this. I was finally getting to the point where I don't cry everytime I tell people my baby has SMA. Now I have to add Chiari malformation and epilepsy to the list. As much as I know I can't handle much more, it hurts me more to see my baby going through all of this. I wish I could take his pain away. I wish I was the one going through countless tests to see what else was wrong. It seems like every single time we go to the dr anymore something else is going on. I hate seeing people in Walmart and them asking me what is wrong with him. I hate having to say "He can't walk. This is his wheelchair. NOT a cute little stroller." It breaks my heart to say it everytime. I hate having to have the certain kind of vehicle because if we don't we can't even go anywhere where he would be able to be mobile. I know I need to be strong, but I created this blog so I could vent. Please don't think any less of me for doing so. Everyone needs to vent once in a while. I am trying so very hard to stay strong for my family, but it is getting so hard. I just want to cry....all the time. Well, I will stop for tonight. I need to get it together before I have to wake up and do this all again tomorrow.

Thank you all so much for your prayers. It truly means a lot to us. Please continue to pray for my baby and please add me to the list. We need a miracle and I need strength. <3

Our trip to Cincinnati Children's Hospital

Let me just start off by saying that I am so incredibly proud of our little man. He is one tough cookie! We left for Cinci on Monday because we had appointments starting early on Tuesday. Before we even went to Cinci the hospital sent me a schedule of all of our appointments for the week. So just like it said, we showed up at 8:15 for X Ray and then were planning on going straight to see pulmonary. Well, we get to Radiology and they don't have an order for us and it shows that we don't have another appointment til 11! I was getting irritated because this always seems to happen wherever we go. Nothing is ever right. The lady in Radiology was so nice and decided to investigate it for us. Turns out pulmonary cancelled our appointment and xray without even telling us! We went to pulmonary to get an explaination and they told us to just go ahead and come on back to meet with the dr. We had never met with this dr before and he was so nice and apologetic. He looked at Zion's xray that was done in August (obviously never looked at by anyone else!) because it showed that he was leaning to far over (from scoliosis) that his ribs were almost pressing on his lungs. So now we have to do cough assist on Zion twice a day on a different mode than if he was sick. When he's sick we use it and it inhales and exhales for him, we are only supposed to inhale for him every day and let him exhale on his own. That will help keep his lungs healthy. After pulm we went to see neurology, Dr Wong (ammaaaaazing!!!). She was so great! We love her! She pretty much just got his history and checked him out. She looked at his back and decided he needed another xray, sitting and laying down, and that he needed an MRI to try and figure out what were causing his seizures. We met with PT and a few other people but those all went great. They got us in for MRI yesterday, so Wednesday. We were supposed to be there at 1:00 sharp and Z was supposed to fast. Before going to MRI we had to get labs drawn. After 8-10 vials of blood being drawn we finally ended up in Radiology, again. Only to find out that an MRI machine had went down and they were behind about 2 hours! They took us back to get prepped hoping they would catch up, but no....we waited for about 3 hours in the back. We were getting up to leave when a machine finally became available. Thank goodness! Waiting in a tiny room with 2 frustrated kids is definitely not something I'd like to do again. Anyway, some nurses took Zoe for a walk so me and Paul could both be with Zion while they put him to sleep. For those of you who don't know, being put to sleep while you have SMA is very risky, things can go majorly wrong because their breathing isn't like a "normal" childs. So we were very worried. He did great though. Waking up was pretty bad, just because he was so cranky, hungry, cold, exhausted, and just sick and tired of people messing with him. They thought he might have to stay over, but about an hour after we finally got to leave back to the hotel. This morning we went in for the results. I figured they'd either find nothing or something that was causing the seizures. I was just ready for some answers. Instead, I got more questions. They did find something, but it wasn't related to SMA or causing the seizures. Dr Wong showed us the images and of course I really had no idea what I was looking at. She explained that there was brain tissue that was about 6 mm long going into his craniocervical junction. That was all blab to me. What in the world are you talking about? I was getting hot and very nervous. I heard her say "not really tumors" and "you need to meet with a neuro surgeon very soon". We sat down and she explained it some more. The part on the back of your head where it kind of "dips" in is where it is. There is brain tissue hanging down there and it's only a problem for people in contact sports or with weak muscles whose head can just fall back. So it's a major problem. That part of the brain is what controls the breathing and swallowing. If he were to fall and hit his head (which he falls all the time) he could cause brain damage. We have to get a head support for his little wheelchair and be very careful picking him up and letting him sit on his own, which is getting very hard for him anyway. We will hopefully hear from the neuro surgeon soon with an appointment.

Now onto his X Rays......It definitely shows scoliosis. :'( When he's laying down his curve is 21 degrees and when he's sitting up his curve is 46 degrees. We are to use his back brace as much as possible until we can meet with ortho. Which is going to be the same day as neuro surgery. Ortho will look and see if we need to go ahead with surgery. They surgery they would do is called VEPTR. It's where they put rods in Z's back and every 6 months they would extend them. I am hoping his back brace helps for awhile so we don't have to do this now, but I'm pretty sure all SMA kids have to have this done. Well, that is the news for now. I will keep everyone updated as we get information. Thank you all for your prayers. We are really just trying to think positively right now. Even though that is extremely hard at this point. Thanks again!

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! :)

Sports!

For MONTHS I've been searching for a sport Zion could play in. Every place I called he was either too young or it was way too expensive. FINALLY, I saw a random sign while driving home from the hospital that said Special Needs Softball! My baby boy has wanted to play sports forever. It is definitely his favorite thing to do. I couldn't get him signed up quick enough! He is SO excited to start! He has worn his softball helmet and baseball pants ever since he found out he can play. :) His first game is September 11!! This is going to be the cutest thing. I can't wait to finally get to see my little man playing ball. This has been my dream for a long time. I sound like a dad, lol, but it's true. I'm a big sports player so I have always dreamed of seeing my babies playing in the field or on the court. :) I cannot wait! Here's a little preview:

                                                            How stinkin cute is he?! :)

Well, just wanted to update a little since I haven't in awhile. I am headed to bed so I will update more later! Night all!

Baby Blues

I had the privilege of holding my friend's brand new baby boy today. As I sat there holding this 7 lbs of perfectness (word? :)) I couldn't help but think about having more babies. I think about this quite often but I always try to think of something else as this is a very touchy subject for me. I'm not ready to be done having babies. SMA has taken that away from me. I couldn't bear the thought of giving this to another one of my babies. The risk is too high for me. I still can't get the thought out of my mind though. I always dreamt of having lots of little ones running around. Paul and I had decided we wanted 3 or 4. Well, that isn't a possibility for us anymore. I get jealous of seeing people and their healthy babies. As bad as that sounds, it's true. I want that for us. I want to actually be happy when I see positive on a pregnancy test. When we found out about Zoe it was right in the middle of trying to figure out what was wrong with Zion. It was a rough 9 months. All I could think about then we found out about SMA was if my unborn baby had it as well. I do not want to go through the torture of that again. ANYWAY, just needed to vent real fast. :) On to happier news! Paul's parents got Zion his first tricycle today!! My father in law is very creative and is so good at adapting things for Zion to be able to use.

He was SO excited to be able to finally ride his very own bike. :) I had a breakdown right in the middle of Target after we found out about his diagnosis. As most of you know Zion is obssessed with Toy Story and we happened to see a Toy Story tricycle. I couldn't help but think how my baby is never gonna be able to do that. Every SINGLE time we go to Walmart and pass the bikes he begs for one and I have to figure out a way to tell him no. It brought tears to my eyes as I saw my sweet baby boy being able to sit on a bike and feel like he was riding it himself. The bike is made so whoever is pushing can stear as well as Zion. That way he doesn't run into anything. :) Which I'm sure he would never do, but just in case! lol So today started off a little rough for me but my gloom soon turned into sunshine :) Zion tends to be able to do that for me. I see someone else's perfect baby and I get jealous. Then I look at my PERFECT baby and all is well in the world again. <3