Wednesday, February 27, 2013

Euro-Peds Comes to an End

Today was Alex’s last day at Euro-Peds. He started back on November 7, 2012 and was supposed to be done at the end of January, but they extended his program an extra month because of how well he was doing. (I also think the girls couldn’t handle saying good-bye to his super cuteness!)

Back in October when he had his evaluation he couldn’t sit for more than 30 seconds tops. Now, he can sit for up to an hour at home on the floor playing with his toys or while watching TV – sometimes longer.

I had two goals for him when he entered the program. 1. To be able to sit on his own and 2. To be able to get into the sitting position from lying on the floor. He fulfilled one of those goals and I couldn’t be happier.

You may not realize how important your core muscles are. You need them to be strong in order to do so many things such as sitting, balancing, getting into a sitting position, standing up from a sitting position, walking, crawling and so many more. If Alex had strength in his core then he would be able to do so many of these things. That is why I am not surprised that he cannot YET get into the sitting position because of how long it has taken him to just sit on his own. I believe some day he will though.

When I look at him sitting on his own, it warms my heart. I think I smile every time I look downstairs from the kitchen and see his little body sitting up, balancing and playing with his toys. He has no idea how proud we are of him.

He has begun to tolerate four point. It is a very hard position for him (all fours) because it requires a lot of upper body strength and with his high tone through his arms it’s hard for him to control it. He does better if he is on a ball but over time I am sure he will be able to do it on the floor.

The program in my eyes was a success. It came at the perfect time since my regular PT was leaving on maternity leave for three months. I am very grateful we were able to attend the program instead of missing out on PT for three months.  We plan on going back in the fall for another three month stint. Right now there are 100 people on the wait list! That is insane, but the program is one of a kind and I would recommend it to anyone out there who receives Physical Therapy for a disability.

We will be returning to our regular PT sessions in a week or so. Alex went for his evaluation last week and Kate was pretty impressed with Alex’s progress. She loved his sitting, made him show her four point and when she put him in the gait trainer he took off!! She couldn’t believe her eyes! I am looking forward to going back. She is very good at what she does.

He had the BEST day today. He was laughing so hard when he was walking in his gait trainer (which he did twice) and he also rode his bike which he can now pedal on his own while stopping for some breaks. He got an award for completing the program, a T-shirt to sport around this summer and a bowling set! He had a crowd around him and he was hamming it up as usual. He left a lasting impression for sure.

His Completion Award!

Walking in the Gait Trainer
Riding the Bike

With Karla and Emily

Alex couldn't do this before Euro-Peds!

Sunday, February 24, 2013

One on One for Two

As a parent you want nothing but the best for your children and you want nothing more than for them to succeed. I have plenty to keep me busy when it comes to Alex but that doesn’t mean Evan should be left in the dark.

Recently I have been noticing some jealousy issues with Evan. I know I spend a lot of one on one time with Alex because of his mobility issues and up until recently, his inability to sit on his own for long periods of time. Evan has always been really good about keeping himself busy and playing well on his own, but I am seeing more and more that he is craving my attention. I am now wondering if some of that is attributing to some of his behavior issues.

When I take Alex to therapy Evan is usually left with one of his Grandmas. This is good for him because he is not sitting at therapy bored out of his mind and it is a great opportunity to spend time with his Grandmas and get the one on one time he needs. He really enjoys his time with them and when Alex comes back into the picture Evan tries to claim Grandma as his. Jealousy issue #1.

Just the other day, Evan woke up from his nap before Alex (which is rare) so he came down into the family room and began playing with his blocks. I got down on the floor with him and he played so well, he didn’t act up and was my sweet little boy. I left for a few minutes to get Alex up and brought him down to the family room where we cuddled for a few minutes so he could wake up. Evan began throwing his blocks all over the room and whining. He had such an angry little look on his face and I knew in an instant that he was upset that Alex was now in the room. Jealousy issue #2.

Evan has been throwing tantrums now for about a year and not all of them are jealousy related, but I am now recognizing the ones that are. I guess I didn’t realize just how much he needs me. I am home all day with them and I thought my presence could be enough at times but now I am seeing it's not. Evan has always been so independent and I guess I took advantage of that thinking this whole time that things were ok when clearly they aren’t.

I don’t neglect Evan by any means, but I need to make it a point to spend more one on one time with him. I have included Alex in the past, but now that he is sitting so much better on his own, it’s ok to leave him be with his station of toys while I focus a little more of my attention on Evan. Hopefully that will cut down on the whining and throwing of toys. I know it won’t relieve me of the tantrums all together but it may be good for both of us in the long run.
Evan has had some speech delays so his communication isn't always clear which can be frustrating for both of us. We have been working with a Speech Therapist through the school and he is coming along very well and I think things are progressing nicely. He tries to communicate with me and even though it’s not clear, I understand what he wants for the most part.

My emotions are tested everyday; whether it be the whining, crying, tantrums, not listening or lack of communication, the stress is present and I need to do my best to be patient and take everything in stride. I didn’t realize that when you become a parent you never stop learning how to do your job. I am Alex and Evan’s mother, mentor and teacher for the rest of my life and it’s important that I take a minute to assess the situation at hand. I am not perfect, but there's nothing wrong with wanting to be a great mother and do everything in my power to make them happy. This is just one of many fazes in life and it will all come together in time.

Evan and Alex February 2013

Saturday, February 23, 2013

A Little Ball of Fire

That is what Alex's PT referred to him as this past week when he was unstoppable at therapy. He was doing everything from four point, to using his right hand, walking in the gait trainer and riding the bike. All of these things were done in the course of an hour and I am sure he would have kept going if his time wasn't up.

Four Point is Alex's least favorite position. He is on all fours bearing weight through his arms which is a hard task for him, but it is something he needs to learn in order to keep growing. He has learned to enjoy it more on a ball, but the floor or a mat is a little bit harder. He is getting there, he just has to keep practicing.

Alex's dominiant arm and hand are his left, but if that is restricted he is forced to use his right hand or do nothing. There was a time when he would do just that....nothing. He would sit there and wait for someone to help him, but as time has gone on, he has made more of an effort to open his right hand and use it to obtain certain objects. I am sure he will be casted again when we get back into OT. It proves to be somewhat effective for him.

Alex seemed to be getting bored of the gait trainer in his therapy sessions, so he took a week off from it and went back to it on Wednesday. I don't know if it was because he was on a roll or if the Botox injections helped, but he took of and was done walking his route in half the time as he normally is. It usally takes him 15-20 minutes to complete the course which leads him to the waiting room to meet me. On Wednesday, he made it in 7-10 minutes, so they turned him around and put him in the bike to finish out his session.

Normally on the bike his PT will guide him and push him along so he is feeling the rotation in his legs, but he isn't actually pushing the pedals himself. On Wednesday for the first time, he pedaled four revolutions on his own!!! I couldn't believe it when she told me. This boy never ceases to amaze me. He truly is a remarkable little man and my little ball of fire.

Saturday, February 16, 2013

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.


Wednesday, February 13, 2013

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.