Making Hard Decisions

It’s never easy when your child has to undergo a procedure, endure hours of Physical and Occupational Therapy, see multiple specialists or receive injections. As a parent, you have to be strong and confident and not only believe in the Doctors that you are allowing to care for your child, but you also have to believe in your child. It's hard making some of these decisions when he is so little, but it's things that his father and I believe will help him.

I have to continue to tell myself that everything we are doing for him is what NEEDS to be done and in the end, it will all pay off. I want to do everything we can for Alex so we can look back in twenty years with no regrets.

When Alex was three months old, he had to undergo an MRI so we could gain a clearer perspective of his CP. A head ultrasound was done when he was just four weeks old which is what initially showed the damage to his brain, but the scan was so vague, that we needed the MRI to tell us exactly what was going on. As hard as it was to hand my three month old son over to a nurse so she could take him back and “put him under” was like having him ripped from my arms. Seeing his little body on such a large bed being wheeled into recovery was even harder, but in the end the MRI was what NEEDED to be done to give us a clearer picture and better understanding.

When Alex was eleven months old, he started Physical Therapy three times a week. There were sessions where he would cry the whole time. My heart would ache for him, not because he was in any sort of physical pain, it was the emotional side of not understanding what was happening and why he had to go through such a vigorous workout. He wanted me to rescue him, but I couldn’t because it was what NEEDED to be done to strengthen his muscles and increase his mobility.

Alex has a handful of specialists he sees. I have discovered these specialists out there that I never even knew existed, and in order for us to continue to receive a special secondary insurance to help cover the medical bills, it’s who he NEEDS to see.

Last August, Alex received some injections in his lower legs to help the muscle spasticity. It was an all around new procedure for us, but I held him down as the Doctor injected him in hopes that it would give him some sort of relief in muscle tightness. As soon as it was done, I was there to comfort my precious son as the tears streamed down his face. It was a success even for just a short time.

Today we tried Botox injections on his inner thighs for the first time. It was a very low dose to try and help his muscles relax so when he stands his legs will be more open and not tight together, it is supposed to prevent him from crossing over when he walks and just overall help his tone. We are hoping for successful results.

This is a lot for a young child to endure and although not everyone is going to agree with the choices Eric and I make for Alex it is what we feel is NEEDED in order for him to come out on top. Not everything is going to work, but we would never put our child in danger. We always ask the necessary questions and try to do as much research as possible.

It's not easy making these decisons as a parent, but we aren't the type of people to sit back and do NOTHING. In the end, the most important thing is that we believe in Alex, love him and are going to do everything in our power to give him the best life we can. We are fully committed to doing that and we aren’t going to let anything or anyone stop us.

 

 

 

A little after thought….

     Alex’s picture was featured in a Euro-Peds presentation this week. I guess they had a really cute picture of him smiling in his gait trainer and couldn’t resist using it. We couldn’t be more proud.

 

All Because of Casey

Yesterday we got together with our “Twin Friends” Blake and Casey and it was one of the best play dates we've had. Evan, no doubt always has a good time no matter where he’s at. He’s a pretty adaptable kid. We got there at 3:00 and he didn’t stop until I had to carry him out at 6:30. It’s always fun going to someone else’s house because it’s a different environment and they always have different toys and that is very stimulating for a two year old.

We have been getting together with Blake and Casey for about five months now, but yesterday was the first time that Evan and Blake really played together. They played nice too. They were chasing each other, making each other laugh and playing side by side. It was really nice to see.

What made me even more happy was how well Casey and Alex played together. Neither boy is as mobile as Blake or Evan so they have adapted to playing on their own or with one of us adults. Yesterday, Alex sat up almost the whole time he was there playing with various toys. Casey is more mobile so he made his way around the room finding different things to play with but more than once, he made his way back to Alex. He would scoot on the floor and get right up next to Alex and share the toy he was playing with. He was kissing on Alex and touching his head. Alex in turn was touching Casey’s hair and it brought such a huge smile to my face that I had to share this story in the blog.

Alex doesn’t get much interaction with other kids as much as I would like. (Other than Evan) When he is at school, he is getting therapy half the time and the other half the teachers are working with him. None of the kids have gone out of their way to play with Alex but that could just be an age thing. Evan will occasionally include his brother, but most of the time there are jealousy issues and fighting. (pretty common with brothers – and especially twins)

I won’t lie when I say I am bothered when Alex is left out because it makes me worry about how things will be for him in the future when he gets into school. Yesterday changed a lot of that thinking for me because he wasn’t excluded and that is all because of Casey. Casey has no idea that he made my day or Alex’s for that matter, but he did. He was just being himself and even though he doesn’t realize it, he made a difference. He gave me hope that things will be ok for Alex; that I shouldn’t worry about little things and somehow it will all be ok.

I knew when we met Rhiannon and her boys Blake and Casey that they were brought into our lives for a reason. Over the past six months, Rhi and I have been able to relate to each other in so many ways that I cannot relate to other Mom’s on.  But more so, they were brought into our lives for moments like these.

 

 

Friendship

When you are five years old and starting school, all that matters are the toys, the snacks and maybe who you are playing with that day. It never crosses your mind if you will still be friends with the kid next to you in 25 years.

 

On Saturday night, I went to dinner with four other girls, one of which I have known since I was five, two I met in first grade and one I have known since sixth grade. That’s a long time. I haven’t been close to all of them since the day we met, but somehow, some way over the years we have seen each other along the way.
 

We went to the movies to see Silver Lining Playbook and then to dinner at Bar Louie. We reminisced about our childhood and talked about where we are now in life. We laughed A LOT and sitting there that night made me realize just how important it is to stay connected with these girls.
 

I have a lot of memories with them individually as well as a group. None of them are catty like the girls are these days. They are true, genuine and sometimes flat out hilarious. Being in our thirties now is so different than when we were in high school. All of us have come into our own, we are who we are, we aren’t out to impress each other and that’s what makes it so much fun. We click as a group so well and I am really looking forward to spending more time with all of them.
 

I know a girl’s weekend is in store for us this summer and if it happens, and all of us can make it, it is going to be one hell of a good time.
 

Thanks for being my friends:  Stephanie, Rachel, Heather and Kathryn. I am a very lucky girl.

(I wish I had a picture of all of us, but I forgot to take one!)

Enjoy the Ride

I often think about the path I am on in life. It’s so different than I ever imagined. It has its highs and lows just like so many others I know. There are many days when I feel like I could pull my hair out, but then in the middle of that day a sweet moment between my two precious children will occur and make it all better.

It’s hard to really sit back and enjoy every moment when days and months just seem to be flying by. Many of my reflections come when I am driving in the car. It has become my sanctuary. It’s the one place that is quiet for me even with the radio playing. The kids are quiet and I feel like I can actually think.

I still question Alex and his CP; I wonder why Evan won’t listen to me, which at times forces me to yell and makes me feel like a bad Mom. I always question what I am doing wrong and if I am doing things right, but really… WHAT IS RIGHT?

It's time I stop questioning the CP because it's not going to change anything. It's time I stop questioning my parenting skills and stop stressing about what I think I am doing wrong and enjoy the ride. Life is such a crazy whirlwind and I don’t think many people really stop for even a minute and see what they have. I am not talking about material things either. Yes, those things are wonderful but they are not what make us who we are. It’s the people and the love and support they give us. I love my home, and everything in it. I am glad that I have a car that gets me where I need to go but none of those things got me where I am today.

It seems like yesterday I was a little girl playing in the sandbox, running around the back yard with my little sister and riding my bike through the neighborhood. Now, here I am in my thirties with two sons of my own who will be doing the same things I once did. Where has the time gone?

Life is passing by quickly and we need to take advantage of the moments we are given. Enjoy the people in your life – even if you don’t see eye to eye because someday they will be gone and you will wish you had. There is a reason things are the way they are even if we do not fully understand it. You have to trust you are on the right path and enjoy the ride.

One step at a time

This is our second week now of attending school twice a week and it's going very well. The boys really enjoy their time there which is making me realize that preschool probably won't be so bad once they start.

They are adjusting to riding the bus home and that too is going very well. Evan actually looks forward to getting on the bus and Alex is no longer crying. (he would only tear up at first, then once the bus moved, he was fine). They also have a friend riding the bus with them now as well. His name is Myles and he rode for the first time on Tuesday. Mom was a bit hesitant, but I think she saw how well my boys did and took the plunge.

Alex and Evan officially turned 2 1/2 yesterday, so now it's on Eric and I to decide when to send them to preschool. The teacher would like them to attend four days a week for three hours a day, but with Alex's therapy schedule right now, that just isn't possible. Plus I would like to ease them into the program, not throw them right into it. They are still babies to me.

Evan still looks around for me if I am not in the room and will ask for me as well. My first step is to drop them off, stay for about 15 minutes and then leave them there. That way I am only leaving them for an hour instead of three hours. One step at a time. I haven't gotten to that step yet. I thought about doing it on Tuesday, but I couldn't. I told the teacher today that my plan is to do it next week. We'll see if it happens.

Since starting school in September, Evan's speech is progressing which is great. He has a bunch of new words and is starting to put phrases together. Some of them I still don't understand, but I know he means business! It's really cute. He and Alex still have their own secret conversations. Alex isn't really progressing as well as I would like in the speech department, but he is a little more delayed than Evan and with Evan already delayed in speech, I am sure Alex will catch up eventually. We will continue to monitor it as we do everything else and take the steps we need to in the future. Both boys see the Speech Pathologist at school, so in time this should all work itself out. One step at a time...

Evan riding the Tricycle at School on Tuesday
 

Why do kids test us?

I am really close to reaching my max on both frustration and stress. This year my goal was to enjoy my life more and I am far from that goal at the moment.

Evan is testing every ounce of patience I have and they are running pretty thin right now. He has been climbing out of his crib for a couple of weeks and it seems like it is getting worse than better. There were a few nights this week that he actually went to sleep shortly after we put him to bed, but the past two mornings he has been up at the crack of dawn….waking Alex up with him.
 

We have since removed the front of Evan's crib so he doesn't get hurt climbing out. We knew it wouldn't help the getting in and out of bed, but at least I don't have to worry about him slipping and cracking his head.

He doesn’t just climb out of his crib and do nothing of course, oh no….he gets into anything and everything he isn’t supposed to. He pulls everything off of the changing table which includes opening the wipes and pulling them out one by one and scattering them all over the room. That only happened once before I put them up high where he couldn't reach them. Sometimes he will pull items out of the closet, he will climb into Alex's crib and throw his stuffed animals out - or as I witnessed last night: He crawled in, took a stuff animal and when I came up to put him back in his crib, he chucked the animal back into Alex's crib. (Like he had committed a crime and was trying to cover it up!)

It is not just bed time that is the problem. Napping has also become an issue. He doesn’t stay in bed, he is constantly getting into trouble and it’s overly frustrating to me because that is my time to get things done and instead I am constantly having to go in and discipline him – none of which is doing any good. That is the most frustrating part; not listening. Evan completely ignores everything I say. It’s like I am talking to a wall. I feel physically and mentally exhausted – more so these past 2 weeks than the full 2 ½ years.

I don't understand why he only acts this way around Eric and I. He is fine when he is with either of his Grandmothers. He is the "perfect angel" in their eyes. He doesn't scream, yell, throw tantrums, he goes right to sleep for them, so then I ask myself "What am I doing wrong?"

I am sure I am not the only person in the world to go through this, but it feels like it when you are in it. You feel like no one understands what you are going though. I know I have said this before but parenting is so much more challenging than I ever thought it would be. I am trying to understand all of this and hoping and praying my children turn out ok. I don’t have a lot of faith right now though. I am hoping it gets better. It has to get better.

School Days

It’s funny to think that my kids aren’t even 2 ½ yet and they are already going to school and riding a school bus. The whole reason they are able to do that is because of the Special Education Program Alex is attending through the state. The program is free and since he has a twin (and they don’t want to exclude him) Evan is able to attend the class with him.

The class is on Tuesdays and Thursdays from 8:45 – 10:15. They do circle time which includes a song, a story and usually a small work job. From there they go to playtime (Alex usually spends some time with the OT or PT) and then down to the gym. They do go outside to the playground when the weather is warm. I like the opportunity we have to do something like this because it is good for the boys to get out and do something different as well as interact with kids their age. I am very thankful that Evan is able to attend the program as well with his brother.

We have only been attending the Tuesday class but this week decided to start going on Thursdays as well. They actually get to transition into the Preschool program after the 16^th of this month when they turn 2 ½.  I am not sure I am ready for that just yet so we are going to continue to go to the hour and a half class on Tuesdays and Thursdays for a bit and see how it goes. The Preschool class is three hours long and I am not sure how they will handle that without me being there. (Actually I am not sure how I will handle it.) I get to stay in the class they are in now.

I was able to put them on the school bus – which was a huge step – so I know I can leave them for a few hours once preschool starts. What am I saying? I won’t be able to, that is probably why I am delaying the whole process! I guess I didn’t expect them to be in preschool until the fall, but they start earlier now.

Speaking of the school bus, they are doing pretty well with that. Today was their third ride home (I drive them in) and Alex cries for a few minutes but once the bus starts moving, he quiets down and enjoys the ride. The bus drivers are so great! They sing songs and keep the boys entertained. Evan decided to throw a tantrum in the driveway when he got home today and because I had Alex, the bus driver got off the bus and carried Evan all the way to the house for me. I was embarrassed for the way he acted, but she didn’t think anything of it and it was so nice of her to help me out.

The whole school process has been fun and we will continue to go as long as it is available to us. It gets me out of the house a bit which helps on these cold winter days. I can't believe it took me 10 days to write my first post of 2013! There will be many more to come!