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

Just some thoughts...

So lately I've been having some down days, just thinking how I can't believe my baby has an incurable disease. Well, tonight there was a rally to pray for a little boy named Tripp. I highly recommend you read his mom's blog. It is definitely a tear jerker, but is worth reading. It really makes you think about how good most of us have it. Yes, my baby has a incurable disease, but I still have my baby. He's not going anywhere ANY time soon. I have to worry about him getting sick and being hospitalized, but he doesn't have the daily struggles that sweet baby Tripp has. He is in pain. I can't imagine going through that and I truly admire his momma for being so strong. I haven't ever met her, but I can tell through her blogs that she is an incredible woman. Someone I look up to. Before I go on and start bragging on my Zs, please say a prayer for Tripp and Courtney as they journey through this tough time. <3


So on to my Zs.....I cannot believe Miss Z will be turning 1 in 2 months :( It's very sad, but I'm very much enjoying watching her reach milestones I never got to experience with Zion. She is so very close to walking, but she's such a fast crawler! lol...here are a few of her 1 year pics (Yes I know I started early! :) We have a lot coming up so I wanted to get them out of the way)

                                                                          Beautiful Girl!

Big girl :)

<3 my Zs

Zion will be getting his stander soon!!! Hoping it's sometime this week, but I'm not sure. It is going to be great! I cannot wait! He has been doing SO good! I was getting a little worried when yesterday he woke up from his nap and his heartrate was a little high and then last night his pulse ox alarm kept going off. That is until tonight we hooked him up and noticed the cat had gotten ahold of the cord! So we changed it to a new one and now his numbers are good :) Thank goodness. He's been on a healthy streak so lets hope it continues! Well, I think that is all for now. Just thought I'd update you a little. Even though all of you are on Facebook and know everything I just said. :) Just felt like blogging a bit since I haven't in awhile. Thanks for stopping by!

Family Pictures and the 4th!

This year we got the most incredible gift.....Carole Thornburg offered to take time out of her busy schedule to capture the most precious moments of our Zs. We haven't even seen all of the pictures yet and I was in tears looking through them. They are perfect. Here is a little preview :)

                           This is my favorite <3

                                                              

                   This little boy is my hero <3

                           Beautiful Zoe

This week we also celebrated our first 4th of July as a family of 4. :) It was perfect. Paul had the day off so we spent it as a family and then that night we spent it with wonderful friends. I can't wait for more holidays as a family! <3

Sick days

Sick days always scare me with Zion...my mind rushes to the worst possible things. I always think of those little ones who were completely healthy and then one day it just all went downhill. What if that's today? What if he can't get over this one? What if this is our last day? I hate it. I hate feeling like this. I hate SMA and what it does to our babies. A normal sickness hits their little bodies ten times harder. He spent most of today hooked up to his pulse oximeter. And it beeped....and beeped....and beeped....his heartrate was so high and his oxygen got so low. My heart stopped. We gave him a breathing treatment and his heartrate went higher. Once we were done we made him a pallet on the couch and he laid down. He finally fell asleep and his heartrate went back into normal range and his oxygen was steady at 96/97. Days like today make me cherish every moment I have with him. You never know what's going to strike and how hard it's going to be. He is the strongest little boy I know <3 We will beat SMA!

Family Day

These past couple of days have been pretty tough on me so yesterday we decided to just have a family day. :) I was perfect. Even though we went to the beach and it was closed, we quickly decided on going to a different lake. We spent about an hour just sitting on the edge of the lake letting the Zs play in the water. It was a day I definitely needed and had been needing for some time.

We came home and right away Zion asked to get in his wheelchair. :) That almost never happens! BUT yesterday morning we came up with the idea of getting one of his bigger bouncy balls and cutting a hole in it and putting it on his joystick. He is obsessed with bouncy balls so this was a great idea! :) He is now LOVING his power chair!

He can get outside by himself!

He is so incredibly smart and can get ANYWHERE when he's in his powerchair! It looks big and bulky (well, it IS big and bulky :)), but somehow he can weave in and out of things like you would not believe! I am so proud of him and how determined he is! SMA will NOT limit what he can do, we just have to find a different way for him to do it :)

Potty Training

Sooo....this is the FOURTH time I've tried to potty train Z. The first time he did so good and didn't have an accident for ONE WHOLE DAY! Then once there was an accident it all went downhill from there. We stopped for a few months and tried again....the same thing happened. I was told to wait til he asked for the potty and yesterday he did! He woke up and just asked to get on the big boy potty! Surprised the heck out of me! He sat there.....and sat there.....and sat there! He didn't go at all! He's obsessed with sitting on the potty but doesn't get that he needs to actually pee in it! lol. He wants to be on the big toilet but his feet/legs fall asleep when they hang there so he's been sitting on his little potty. He finally went pee on it today! lol. He was rewarded with one Mike & Ike. :) I tried to bribe him with new Diego underoos but he doesn't like that idea. He said his bottom would hurt. ?? Don't know why he thinks that! If anyone has any tips/advice for me on getting him potty trained that would be greatly appreciated! The hardest thing about it is when we are out he can't go potty, even if he needs to. He IS NOT sitting on a toilet that is not in our house. I need to carry like toilet covers with me everywhere. Or a potty chair. ha!We'll see how this time turns out!

Miss Z got her first big girl dinner last night. :) Pizza lasagna! The messiest first meal ever! But it was so cute. She was a mess after but she was so happy! She's getting so big so fast and it's breaking my heart :( With Z having SMA Paul and I have decided we aren't going to risk having another baby with it so Zoe is our last one. :( I always wanted a big family and wanted 3 or 4 kids. It's a very emotional subject for me. I want more kids so bad, but I know it's just selfish. I would hate to have another one just because I want one and they ended up having SMA. I don't want another baby to go through what Z has had to go through. This is the most random blog ever. haha! Here's a pic of Miss Z being big and covered in pizza sauce! :)

I have the cutest kids ever!!! :)

Summer!

This has been a great summer! Z got his power wheelchair a few months ago so he can keep up with the kids! It has been awesome seeing him be able to play with the kids and go wherever they go! It makes me so happy to be able to see my baby be so independant!

Zoe is growing SO fast! She is already sitting up and 2 days ago I layed her on her belly and when I came back in the room she was sitting up! She's crawling everywhere! I couldn't wait til she started moving and now I think I was crazy! :) It's great to see her reach milestones that it took Z a long time to reach, but it just makes my life that much more crazy! :)

They absolutely love each other <3

I am honestly so blessed to be their momma <3