Super Saturday

Today was just one of those days that had some great little moments that I just had to share it with the world. The boys looked super cute today in their overalls. They got them for Christmas and this is only the second time they have worn them and I don’t know why because I could just eat them up they are so cute when they wear them! We took a trip to Sam's Club and since they can sit together side by side in the cart, they got a lot of attention.

My Sister and I decided to get together and take the kids to the park today since the weather was pretty close to perfect. I picked her and my niece Layla up this afternoon and brought them back to our house before heading to the park. The boys were napping when I left and as we pulled onto our street, Eric was pulling the boys in the wagon they got for Christmas. I just about melted because they looked so darn cute and Alex was sitting so well! The stipulation in getting the wagon was that it had to have a nice high- back seat for Alex. I still wasn’t sure that it would work, but when I saw him in it today, it was clear that it would and I can’t tell you how happy that makes me. I can’t wait to take them for walks around the neighborhood, take them to the zoo and anywhere else I can think of.

What do you think?

We finally made it to the park and I put Alex in the swing and he was instantly happy. He LOVES the swings and was laughing and smiling from ear to ear. Evan was walking around checking things out with his cousin Layla not knowing what to do with himself he was so excited. My sister took each of them down the slide which was a hit and Evan found a spot under the structure where he plopped down and was content playing with the wood chips. He was a mess when we left, but he was happy and that’s all that mattered. Alex didn’t get much of a nap this afternoon, so he was worn out and fell asleep in the car 5 minutes after we got on the road.

The day turned out great and it gave me a glimpse into what the next few months is going to be like and I cannot wait! I have to admit that I have been having little "down" moments lately but today made all of that go away. This will be the first summer where we’ll get to take advantage of our great back yard. Trips to the park will be more than just me pushing them around in the stroller and I think they are going to be more interested in doing things like the Zoo and the Beach this year! I am really excited for all of us as a family! We are going to have us some fuuuunnn!

Joy to my Heart

I have really been slacking on the blog and I do apologize to the followers. Most of February was awash with the vacation and I haven’t had much free time since being back to really sit down and get it done.

Let me start by saying that I love the communication and laughter that is being exchanged between Alex and Evan. I have always heard that twins have their own secret language and it’s finally starting to show in our household. There isn’t a day that goes by now that Evan doesn’t make Alex laugh; and it isn’t a little chuckle either, it’s a big belly laugh and it’s so contagious. I love it! Sometimes they will talk and laugh when they wake up in the morning before I go into the room; sometimes it’s a mealtime when they are sitting in their chairs waiting for the food and then there’s a moment like tonight. After dinner we were downstairs winding down before bedtime and Evan was making this funny noise with his mouth that Alex finds absolutely hilarious! I can’t tell you how much joy this brings to my heart.

There are many things lately that bring joy to my heart. Lately, Alex has been taking steps when we hold him up (usually under the armpits) and Evan is running around. It gets Alex really excited and although he tightens up because of his tone, he usually relaxes and takes steps toward Evan without us doing anything other than hold him up. It’s too early to tell if Alex will ever walk independently, but seeing him pick his feet up and take those steps gets me so excited for him! He is very lucky to have Evan. It’s great motivation and entertainment for him!

Speaking of Evan, he is such a busy body. He is trying to become more and more independent and doesn’t like being disciplined at all. This week he ended up with a knot on his forehead and a puffy lip. He really looked beat up and I felt so bad every time he got another bump or bruise. He first fell and hit a table at my in-laws and then he took a spill at the mall and bit his lip on the way down. I hate when he gets hurt, but I love being the one he runs to for comfort. He is now giving me hugs and kisses on the spot and it melts my heart every time he does it. I know it won’t last forever so I cherish every one.

Today I met up with a friend of mine who also has twins – a boy and a girl who are almost 3. We met up at the mall and I have to admit I was a bit anxious taking Evan to the play area because I didn’t want to get upset about Alex, but it ended up being ok. I took Alex around and let him go down the slide. I also brought one of his favorite toys so he had something to play with when he was sitting with us.

Now the things that don’t bring joy to my heart: The past two days have been extremely stressful on me. Evan has this new annoying cry he does when he doesn’t get his own way and is mad about it. It is very loud and gets under my skin. He was throwing a fit this morning at every little thing and I actually had to put him in timeout for the very first time. I was so embarrassed because he did it while the PT was here working with Alex. She understood my frustration, but it still isn’t something you want someone you don’t know very well to see. He also threw a fit in one of the stores at the mall today, so I guess I can say hello to the terrible twos a little early. Oh how I am not ready for this!

This week we are finally back on schedule with therapy. Yay! We lost out in February because there were issues with getting the forms signed from the Doctor, but we are finally on track for the next 3 months anyway. What an annoying process it is to get therapy for a child who needs it. I wish there was a better way. I am sure all of us with special needs children do.

Our First Family Vacation

We just got home from our 10 day vacation which included a week in Orlando, Florida and a weekend in Clarksville, Georgia. It was our first vacation with Alex and Evan and by far the longest car ride. Overall, they did great for two 19 month old boys. We had to stop a lot on our way down because they were bored and wanted to get out. We tried to drive straight through, but they weren’t having it. They normally sleep very well in the car, but I think they were just tired from sitting in their car seats all day. We ended up stopping and getting a Hotel room for the night. They were asleep within 10 minutes of getting in the room.

We rented a Condo in Orlando. It was GREAT! It’s funny how you go from vacationing in a Hotel to needing a Condo when you have a family. We made most of our meals there and it was so nice to have the space. Evan went nuts because he had full run of the Condo. He was obsessed with the bi-fold doors for the Washer and Dryer. All he did was open and close them. He also liked the pots and pan cupboard.

Our Condo was minutes from Walt Disney World which was good and bad. Good because we were surrounded by stores and restaurants galore and bad because the traffic was horrible! I had every intention of taking the boys to Disney before we left and then once we got down there, I couldn’t see wasting the money when they would probably only last a couple of hours. They weren’t going to remember it anyway, so we decided to wait a few years and then take them. We did go to Downtown Disney – which was very nice; lots of cool stores and restaurants. We had lunch at Wolfgang Puck Café. It was really good and really expensive!

We also took the boys to Cocoa Beach. Eric and I love the beach so this was something that was a must when we planned this trip. It was a beautiful day and we all had such a great time!!

Alex at Cocoa Beach - 2.22.12

Evan at Cocoa Beach 2.22.12

The boys LOVED the pool at the resort.

Evan taking it easy

Alex enjoying the water!

The pool was great therapy for Alex. He would sit in his floaty and just kick his legs like crazy! They both got a lot of attention from fellow swimmers. They all thought they were so cute and of course just facinated because they are twins.

Once our week was done in Florida, we headed to Clarksville Georgia to visit family for the weekend. I wished we could have stayed longer than 2 days, but it was a fun 2 days. Hopefully we'll be able to go back and visit soon. Where our family lives in Georgia is absolutely beautiful. Here's a family picture of us in their yard. Check out that view behind us.

Clarksville, Gerogia - February 26, 2012

All in all it was a great vacation. Eric and I survived the drive down and the crazy 9 days after and we can't wait to do it again. We got a lot of beautiful pictures and created some wonderful memories with our boys. This is only the beginning of our travels and I am so thankful we got to do this.

Until next time....

Blindsided

Today started out as a disheartening day. We took Alex to the neurologist for his 6 month checkup and things just didn’t go the way I had hoped they would. I went into the appointment with a positive outlook, hoping Dr. Trock would be impressed with Alex’s progress, have some positive feedback….but he didn’t.

This was our third appointment with him and I have been very pleased with his demeanor in the past 2 visits, but not today. He seemed off and even a little rude. He barely spoke to us. He sat there and was waiting for us to just do all the talking and to fill in the blanks. I just don’t know about these Doctors.

At our first visit, he seemed positive saying Alex would walk and the main part of his brain that was affected was his motor area. Cognitive and Vision appeared to be fine. Now, he’s not sure how well he will walk and when I asked about learning and speech delays, he told me there is a good chance of it since that is what the statistics show. I mentioned how he said the MRI showed that the cognitive area seemed unaffected and he told me that sometimes it’s harder to see that on the scan. It was as if he was taking back everything he had said up to that point. I felt like I had been blindsided.

I know that all of these things are in question because Alex does have CP and it seems to be more on the moderate end of the scale even though I want to believe it is mild. Needless to say, I left the appointment upset, frustrated and feeling like we totally had a setback. I wondered if I should change Doctors as well.

Eric and I talked about it and in talking things out I realized that this Doctor doesn’t know Alex at all. He doesn’t work with him on a weekly or even daily basis. All he knows is his medical history and that’s why he only responds to us in medical terms and statistics. I don’t want to compare Alex to the statistics. Why should I? He is his own little person and he is capable of so much and I believe in him because I have seen him make progress.

Yes, I wish Alex were able to do more, like sitting and crawling and standing and walking. But he can’t yet but it doesn’t mean that he won’t ever be able to do these things. He works harder than any 18 month old I know. It’s a lot of work for him to go through 6 hours of therapy a week and it’s frustrating to me that he still can’t control his muscle movements, but you know what….it doesn’t seem to bother him because he doesn’t know any different. This whole process is 100 times harder on me emotionally than it probably is on him physically. This is who he is and this is what he knows. It’s hard for me to understand because I don’t have the issues he has so I want to feel sorry for him, but he doesn’t care. He is just a beautiful boy who loves to smile and laugh at his crazy funny brother. He isn’t suffering, he is fully loved and taken care of and he will have a great life because we are all going to make sure of that.

Alex is going to do what he is going to do and I am not going to let any Doctor out there get me down. I wish I could see into the future to know what will come of all of this, but I can’t. We can only take one day at a time and hope and pray for the best. I will never stop believing in him.

BITS -N- PIECES VOL 2

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It’s been a pretty quiet week as far as appointments and therapy goes. We are waiting on authorization from the insurance company (that’s a whole other story) so we were able to go Monday but once February hit we are on hold for now. Probably a good thing since I have been really sick all week. I am hoping to pick back up this coming Monday.

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Alex had his eye doctor appointment on Wednesday and everything went well. We are still continuing to patch his eyes (one eye a day for 2 hours). He will still need surgery, but it won’t be until later this year or early next year. We go back in 4 months for another check-up.

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Lately I feel like I have to babysit the Doctors offices I deal with to make sure things get done and forms get signed and I am super annoyed with it. Due to the type of insurance we have, we have to have referrals to see specialists. Alex sees 3 specialists right now, so when I went to the Pediatrician’s office 3 weeks ago for their 18 month check-up, I gave them all of the information they needed. Well sure enough, the referral didn’t get to the eye doctor until 2 minutes before my appointment. The reason we are on hold for therapy is because it’s taken the therapists 5 weeks to get 2 forms signed and faxed back from the Physiatrists office. I have had to call twice to get on them about it. Now Alex has to miss therapy because apparently it’s too hard for them to do their job. I don’t get it because they deal with this stuff all the time. Why is it so hard?

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As I mentioned above, I have been really sick this week. I finally broke down and went to the Doctor yesterday and I am so glad I did. I have had the same sinus/allergy problems for the past 3 months and this time it hit me hard. The Doc gave me some pretty strong antibiotics and steroids and it seems to be doing the trick. I am still not 100%, but I am a heck of a lot better than I was yesterday morning. After I got home from the doctor, I laid the boys down for a nap (mostly because I needed to nap) and I prayed that they would sleep – God answered my prayers because we all slept for 2 hours. I was thankful because it was exactly what I needed. Luckily my Mom came over in the afternoon so that gave me a bit of a break as well.

*****

This coming week is going to be busy. In addition to therapy we have an appointment with the Neurologist on Tuesday and I am supposed to meet up with my ex-co-workers on Thursday for lunch since last month didn’t work out due to weather.  They haven’t seen Alex and Evan since last March! They aren’t even going to recognize them!

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We are still enjoying the unseasonably warm and snow-less winter we are having. It's hard to get excited for Florida when we have nothing to leave behind. Oh who am I kidding? I can't wait for the palm trees, beach and sunshine!!!

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.