Bittersweet Moments

Most of the time I have a fairly positive attitude towards Alex and his Cerebral Palsy, but every once in a while my emotions get the best of me and I have a moment where I have to cry to let all the bad thoughts and feelings out.

Over the weekend we got together with some friends who have a 3 year old and an 18 month old like Alex and Evan. It’s the first time we have gotten together with them since Evan started walking, and to my surprise he wasn’t shy about warming up to them and fitting right in. He was running around with them playing and screaming and having fun. I was really excited for him but at the same time my heart was breaking inside for Alex as he sat on my lap. That’s when it hit me like a ton of bricks. The reality of Alex’s Cerebral Palsy; the reality that he can’t sit independently, can’t crawl, can’t walk or chase his brother and friends around. It wasn’t like the kids ran around all night long, it only lasted a few minutes but I was so overcome by emotion in that moment that I couldn’t help but feel sad for him. I guess I am accustomed to my everyday life at home where Evan runs around to make Alex laugh, plays really well on his own and occasionally hugs and kisses his brother. Alex lies on the floor to play or sits up with me to play. I know things will change as Alex gets older, learns how to sit on his own and walks with a walker or on his own but as of now he is not going to be able to participate on his own.  No worries though because they all came into the next room and laid on the floor with Alex and cuddled. That is what actually made me feel better. I know I can’t let these moments make me sad or feel sorry for Alex. He has so much going for him. An infectious smile and laugh, beautiful dark brown eyes, strength like I have never seen and two parents and a twin brother who love him very much. I know in my heart once Evan has a better understanding of what is going with Alex, he will protect him and never leave him behind.

Moving on, let me tell you what Evan did last night. Eric, Alex and I were all sitting on the floor in the family room. Evan was running around as usual and got Alex laughing. Evan went and stood between the chair and couch and he would take a step or two to get Alex to laugh and then he would sprint toward him laughing which would get Alex laughing so hard he didn’t know when to stop. It was one of those moments that you never want to end.

Tonight, Evan would not go down. I checked on him a couple of times and he just kept continuing to scream. The 2^nd time I went in, he reached for me and I couldn’t resist. I scooped him up and took him into my room to cuddle with him. Evan isn’t a cuddler. He is on the move all the time, so when these moments occur like tonight, I can’t help but want to cuddle with him. He calmed right down and was asleep in my arms within 15 minutes. I didn’t want to put him to bed. I was in Heaven. Mr. Alex must have been jealous because about an hour later he woke up crying, Eric brought him down, he cuddled with me and was back to sleep within a few minutes. These moments are bittersweet for me and is what makes me love being a Mom.

BITS -N- PIECES VOL. 1

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Last Sunday we took the boys to the Circus for the first time. To be honest, we were both really dreading it because we knew that it would be exhausting and stressful. We took the stroller in thinking we could find a seat where we could keep them in it. That didn’t work out but surprisingly they did sit on our laps. When the lights went down, they were both mesmerized by the glowing lights around the arena. Just before the intermission, Evan was getting antsy so we let him walk around the concourse a couple of times and ended up leaving after that. Yes, I was still exhausted, but it went better than I thought it would.

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Alex’s PT is on vacation until February 1^st, so we are seeing the other PT while she is out. I was a bit worried that Alex wouldn’t do well with her because he sometimes gets upset with people he doesn’t know. Luckily that is not the case with Julie. He flirted with her right away which has now earned him the nickname “Ham” from her. He was in the gait trainer on Wednesday and she got his legs started at first and then she would only move the actual trainer and he moved his legs all on his own!! I was so proud of him!!

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Evan is now entering the temper tantrum stage of his life. So far, it’s been quite comical. He likes to throw himself on the floor if something doesn’t go his way or if he gets disciplined. We lay a blanket down on the floor for them to play on and he will rub his face into it and sometimes scream into it. I find myself laughing just typing this. I was informed this week from my husband that he used to do the same thing when he was little. Like Father, Like Son.

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Yesterday I took the boys to the Doctor for their 18 month check-up. I was a bit anxious because their appointment in November did not go well. They cried and were cranky the whole time which made it very hard on me since I was there alone. This time was a completely different story. They were super cute and very well behaved. Luckily they are caught up on their shots so it was strictly a well visit. Evan is already a whopping 25lb 10oz and Alex is 19lb 11oz. It’s a far cry from the 3.5 pounds there were at birth. Both are healthy and growing well. That’s all a Mother can ask for.

Friday the 13th

So I can’t really complain about the winter we’ve had this year. It’s already mid-January and we haven’t had any snow storms and it’s been unseasonably warm. I know I probably just jinxed it, but it figures that the year we are going to Florida, it’s actually nice. Don’t get me wrong, I am excited to go, but it would be more exciting to leave a ton of snow and cold behind. J

To some peoples’ surprise we are driving; I can’t imagine Evan on an airplane! Oh my goodness, I would be exhausted after a 2 ½ hour flight. Plus, people who know us know that we love to drive everywhere. We like seeing other states, being able to stop and we have to pack so much that it just makes more sense. I just hope the kids do well on the drive; it is their first long road trip. I am looking forward to some warm sunshine and seeing the ocean. I can’t wait for Evan to dig his feet in the sand and to dip Alex in the ocean. It’s going to be so much fun!

Before we get to the vacation, we still have a few weeks of daily therapy and appointments with the eye doctor and neurologist to contend with. We have been patching Alex’s eyes since his appointment in November. We alternate eyes with 2 hours each day. I do think it’s helped a little. His right eye still wanders a lot but the left one seems a little more stable. I am sure he will still need surgery next summer sometime. It scares me, but I know it’s very successful so I think he will be fine.

We haven’t seen the neurologist since July, so I am looking forward to that appointment. I am curious to see what he will have to say about Alex’s progress. He has been coming along so well. I hope the interruption of Physical Therapy (PT) won’t set him back at all. His therapist is on vacation until February 1^st, and even though she has set us up with the other therapist for the next 3 weeks, it worries me that he won’t get the same treatment he is used to. Plus, he is very comfortable with Kate and is at ease with her when she is with him. We’ll see how it goes.

Occupational Therapy (OT) has been going very well. We have been seeing Jennifer since November and Alex is starting to slowly use his right arm/hand a little more. He has a small splint for his right hand which helps keep his thumb out. He’s been opening his hand a lot more but still tends to keep his thumb tucked in, so the splint keeps it out and we are hoping it will encourage him to grab things with his right hand more. She has been working on putting small foods in his mouth on his own and playing mid-line more with his toys. One of his favorite toys in therapy is the fisher price farm. It’s an older toy and I am so excited that I was able to find it online for $5 for him! I can’t wait for it to come so he can play with it at home too. It should be here tomorrow!

Evan’s new thing is when he comes into the kitchen he goes straight for the pots and pans cabinet. He usually opens and slams the door a few times before reaching in and pulling them out. He loves getting his little paws on anything new. The family room is still not “Evan Proof” so that is something I would still like to conquer. I feel like I can’t keep up with that child! He is such a character though. He is funny and loves to make Alex laugh.

Tonight we went to dinner at Olive Garden, and we got seated in the large half circle booth near the bar. The boys were able to sit next to each other for a change and they LOVED it. They were touching each other’s arms and faces and Evan reached for Alex’s highchair to pull him closer!!

This makes me want a new side by side double stroller even more now. I bought one last summer at a garage sale, but it isn’t too comfortable on our hands so I like using it for walks around the neighborhood and that’s it. I want something a little nicer for everyday use. I need for it to be comfortable for them and me since we use it so much. I think the boys are at the age now where they enjoy being next to each other and this way no one gets stuck in the back seat. Hopefully we’ll be able to find something before the trip.

~~~~~~~~~~~~~~~~~Happy Friday the 13th!!~~~~~~~~~~~~~~~~

                   

Week in Review

Since it's been awhile since I have posted, I thought I would give a quick overview of the past week instead of doing one long post. Here's our week in review:

December 24

Christmas Eve was the just the beginning of festivities for the holiday season and was by far the most exhausting for us. My Aunt cooked dinner – which was delicious – but everything else was just crazy. Evan was non-stop and all over the place and into everything. Alex wouldn’t let anyone but Eric and I hold him which was super annoying because there were 15 other people there willing to help. We did manage to restrain them in their high chairs for a short amount of time. I thought they might be into opening presents, but they weren’t – so that was a little disappointing. They got a lot of wonderful things and are very spoiled and loved. Needless to say, by the end of the night all 4 of us were cranky and tired.

December 25

Christmas Day was a little more laid back. I made breakfast and we opened our gifts. We went over to my in-laws for dinner and even though it was still tiring, Grandma held Alex and Evan didn’t get into as much trouble.

December 27

Today we visited the Physiatrist. The appointment was nice and quick after a lovely hour and a half wait in the waiting room. That is not the best of times when you have 2 toddlers. We made the best of it by carrying Alex around, letting Evan walk around and then taking them for fast stroller rides up and down the hall! Hey, you gotta do something to pass the time! Neither Eric or myself were overly impressed with what the Doctor had to say. He gave us some ideas on the exercise ball to use on Alex and suggested Ultrasound Heat Therapy for his hamstrings (which our PT has since shot down) and night splints to stretch out his leg muscles. According to his PT, Ultrasound Heat Therapy hasn’t been clinically proven to be safe and can cause damage to the growth plates in his legs. We decided against it since we can either use heat packs or massage to warm the muscles. He did say that he seems to be sitting better – which he is – and wants to see him again in 3 months.

December 28

Today we celebrated Christmas with Eric’s family. It was nice to have a few days in between. Alex and Evan got to eat their favorite meal – Lasagna! Evan had a ball roaming around Aunt Sharon and Uncle Ed’s house and even played a few notes on the piano at the end of the night! Alex did awesome at sitting up today. He loves his new Crawl Ball that he got for Christmas. Grandma got him laughing pretty good too! It was a really nice day.

December 29

 Today’s therapy was only supposed to be OT, but Kate his PT had an available appointment right after so we took it. Alex wasn’t very pleased, but he still did well. During OT he practiced putting cheerios in his mouth. This is going to be a long process for him as he doesn’t understand how to pick them up and transfer them to his mouth. That connection just isn’t there and I wish more than anything that it was. He will pick things up that are on his tray but he just brings his hand back and drops it. He actually seemed to pinch the cheerios with his right hand better than his left which is surprising. I just have to be patient with the process and sometimes that’s hard for me.

December 31

No big New Year’s plans for us. We went to an early dinner, walked around the mall and called it a night. I have been really sick with sinus stuff so I just laid around after the boys went to bed. I really only stayed up till midnight so I could kiss my husband!  

A lot has happened this year with Alex and Evan. They have grown and changed so much. I am very pleased with Alex’s progress in the 6 months he’s been in therapy. I am looking forward to this coming year and hope that it holds just as much promise and good as 2011 did. Evan is soaring along and becoming such a big boy. I am so proud of both of my boys and can’t wait to see where life will take them this year.

Happy 2012!