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.

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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!!!