All The Right Moves....

We have been at our usual busy state here at the Cuevas House. We are eagerly awaiting to wrap up another school year. In the past few weeks we have had Dylan's Basketball dinner, The Empire State Games for the Physically Challenged, Heather's school carnival, Dylan's Field Day, Heather's Field Day, Miracle League, Girl Scouts, and Heather's Recital just to name a few things. All of these things plus being pregnant equals a very tired Mom. Although I will say the exhaustion is definitely worth it to see how happy these activities make the kids.

On Memorial Day weekend we took the kids to Fleet Week in Manhattan. Fleet Week is a really fun time to be in NYC. Of course when I was younger and single it was all about those men in uniform. Now for my old, fat, pregnant self and my kids it is all about the ships. All of the military staff could not have been more helpful. They all went out of their way to make sure we saw everything we wanted and took a lot of time explaining things to Dylan and Heather.

About two and a half weeks ago I started to feel little Mr. Cuevas moving. It is funny because when you first find out you are pregnant you really feel and know that you are pregnant. Your body is going through a multitude of changes and it is obvious there is something different going on. Then there is what I call the silent stage. It is when the morning sickness fades, your body starts to adjust to bigger boobs and a bigger belly and you start to feel relatively normal again. It is a time I actually hate because I almost feel not like I am pregnant at all. Then my mind wanders that something is wrong and I stress and worry until that blessed day when I feel the baby move for the first time. I remember when I felt Dylan move for the first time we were at a wedding. Dylan's moves were delicate which I now realize was due to the SMA. I first felt Heather move when Ron and I were out to dinner. Heather moved around so fast and fierce that she used to throw off my balance. Not much has changed since she was born.

I was more than anxious to feel this baby move. One day I was laying down watching TV and it happened. I felt little Mr. Cuevas move for the first time. Such relief and so much happiness. He is a mover and a shaker too. Yesterday we went for my 20 week sonogram. It was a blast to watch the little guy moving all over the screen. The tech actually had a hard time taking some of the pictures because he wouldn't stay still. I could tell she was getting a little frustrated but Ron and I stared at the screen laughing, thrilled to see our little guy moving like crazy all over the place.

Dylan and Heather are getting more excited as my belly gets bigger and bigger. We had them help pick out some things they would like for their new brother although I did have to tell Heather that a baby boy may not appreciate all things in pink sparkly form. We still have not picked a name for our little guy. Dylan likes Anthony and Austin. Heather likes Nicholas and Sebastian. I am truly enjoying all of the plans they are making for their little brother's arrival.

Little Mr. Cuevas

Third times a charm....

At Christmas, Ron asked me what I would like as a gift. I told him I wanted a baby. He asked me if I would like diamond earrings instead.
Even though I didn't like it, I understood his point. Getting pregnant is not such an easy task. It's not that I have a hard time getting pregnant. That has never been the case. What is the case for me is the stress that is endured once you know that you have a 1 in 4 chance of having a child with SMA. Why stress you ask as many people will tell you the odds are in your favor. That phrase is sometimes hard to swallow when you have already been touched by this disease and the wrath is takes upon your child. For me, it makes the thought of getting pregnant nervewracking to say the least.

When Dylan was diagnosed with SMA, Ron and I sat on our bed and cried for hours. Ron asked me if his son was going to die and I said I didn't know. I felt helpless.  I also felt I was determined to give Dylan a full life and that I wanted to have more children. Ron and I then began to look at our options. We met with several genetic doctors and had some bloodwork done. This bloodwork confirmed that Ron and I were both SMA Carriers. We were told that since we were both carriers each pregnancy would have the following statistics regarding SMA:
1 in 4 chance that the baby would not have SMA and not be a carrier.
2 in 4 chance that the baby would not have SMA and would be an SMA carrier.
1 in 4 chance that the baby would have SMA.
The odds are in your favor (don't like that term at all) said the Genetic Dr. You should just take your chances and concieve that natural way and if the baby has SMA you can terminate it and try again. Wow. I thought this woman was way too clinical. Like that is such an easy decision for any parent to make. Like that decision wouldn't be life altering and upsetting. She made it seem like terminating a pregnancy was no big deal. I left her office feeling completely empty and a bit more helpless.

In 2005, Ron and I made the decision to try IVF. During IVF the embryos are tested for SMA with a process called PGD. Those embryos that do not have SMA are then implanted back into the Mom with the hopes that one will create a pregnancy. IVF was a long process for me. At the time, Dylan was very unstable and my Mother was back on chemotherapy. We almost lost Dylan several times during my IVF cycle. My IVF Cycle was unsuccessful and I remember on my follow up visit, the doctor said to me, Mrs. Cuevas you really should consider doing this the natural way after all the odds are in your favor. I absolutely lost it on this man. I told him it was easy for him to say that from behind his desk in his swanky Manhattan office making millions upon millions of dollars not knowing what my life has been like watching my child deteriorate day in and day out. I told him that even though I had a child with SMA that the odds were still in my favor because my son was absolutely amazing and that he had changed my life in ways I never knew possible. He agreed with me and then sat me down and had a nice talk with me where I finally saw a side of one of these doctors that was not clinical but was more compassionate.

A month later Dylan had a very bad episode and we made the decision to trach him. A month after that I was pregnant with Heather. I was so happy and nervous at the same time. During our IVF Cycle, we met with a doctor named Dr. Mark Hughes who is one of the pioneers of the PGD process. Dr. Hughes had told us that even if I did get pregnant from my IVF Cycle that I would have to have a CVS test to confirm that the baby did not have SMA since there was a small chance of wrong results from the PGD. He had told me he knew a brilliant doctor in Manhattan who he would recommend to perform this test. When I realized I was pregnant with Heather I wanted to know if she had SMA or not so I contacted Dr. Hughes to obtain this doctor's information. I then contacted this man, Dr. Mark Evans and set up an appointment to have the CVS test done. To say I was a bundle of nerves was an understatement. We first sat with a Genetic Counselor who was wonderful. She was really compassionate and just kind of understood what we were going through. She also never used the term...the odds are in your favor. Dr. Evans was a great man as well. I actually found him to be quite comical for a man of such intelligence and expertise. The test went smooth and we were told we would have the results in a few weeks. A few weeks later we found out that we were having a baby girl who would not have SMA and who was not a carrier. We were beyond excited. After Dr. Evans congratulated me he told me he would see me in 3 - 5 years when I was pregnant with number 3. Yeah right, I thought. This is it for me.

Nearly six years to the day of my CVS test with Heather I sat in Dr. Evan's office waiting for my CVS test for baby number 3. Yes, I am pregnant. When he walked in the room he told me he was off by a year and asked me if I would like to book an appointment for baby number 4 in 2017. I told him to bite his tongue. The test itself went smooth and we were now given the option to have our test results in 4-5 days rather than in weeks due to advancements that have taken place in Dr. Hughes' lab. We said absolutely. On April 3rd, 2012 we received the news that we were having a baby boy who does not have SMA and who is an SMA carrier. We all were over the moon and felt very blessed.

Dylan replied that we would need to get a bigger van. Heather asked me if the baby was Ron's and I told her no that George Clooney comes to visit me midnight on Thursdays so it may be his. Dylan likes the name Anthony. Heather likes the name Derek Jeter Cuevas. Both kids are really enjoying the thought of being a big brother and a big sister. A few days after we told them, Heather had the following conversation with me:

Mom, is this baby going to walk or is he going to be in a wheelchair?
Does it matter to you?
No Mom, but I just want to know because if he is in a wheelchair like Dylan I will have to help him like I help Dylan, but if he walks, then I will teach him all the right ways that he will help Dylan along with me.
I then told Heather that the doctors told me the baby does not have SMA and that God willing he should walk. She then replied. Good then I can teach him how to clean my room too.

We are all looking forward to this baby's arrival in October of 2012.

I guess I was on Santa's Good list this year as not only did I get the baby I wished for but I also got the diamond earrings too.

Here are the links for Dr. Hughes and Dr. Evans websites:

www.compregen.com
www.genesisgenetics.org

Me and my baby bump.

Dyl and I at NYY opening day

La Isla de Encanto

It has been a really long time since we have flown with Dylan. Once he started having multiple complications with SMA we felt that the idea of flying was overwhelming and it made both Ron and I nervous. We then began our driving tour of the East Coast. We both knew that the time would come where we would want to fly with Dylan. We both wanted the kids to experience a lot more that just what is on the East Coast but were constantly putting this off with tons of excuses. Last year, Ron's brother announced his engagement and we were all excited. Andy and Adriana asked Dylan and Heather to be Ring Bearer and Flower Girl and we were thrilled. When we asked where the wedding was they told us Puerto Rico. I will not lie to you, Ron and I both looked at each other and said how will we get there. There is no bridge to Puerto Rico :-) We began to explore all options other than flying. Taking a cruise, driving to Florida and flying from there. We even discussed having Ron just go by himself. Then we both sat back one night and decided we needed to make this happen. Not only to be a part of the wedding which of course was important to all of us, but to move that next step forward with Dylan. Right then and there I called JetBlue and the trip was booked. There were tons of preparations that followed and some great advice from some other amazing SMA families who have flown with kids very similar to Dylan's type SMA.

The day finally arrived and Dylan and Heather were bursting with excitement. I of course was bursting with nerves. When we arrived at the airport a special agent checked us into security and examined each piece of Dylan's equipment. When we were finished we were off to the gate where they allowed us to pre-board. The flight attendants were very accommodating and before we knew it we were in the air on our way to Puerto Rico. Dylan did not stop talking the whole way there. After we landed and were settled in at our hotel I think Ron and I both felt so accomplished. I knew that Ron had been wanting to take the kids to Puerto Rico for a long time and that it meant a lot for him to be there with them.

Then the partying began and when I say partying I mean Cuevas style which is non stop action for the entire weekend. Highlights were Andy and Adriana's fabulous wedding, Alyssa and Heather's sleepover & getting to spend quality time with my niece, my Dad's credit card not working, Bob's laser beam glasses, Arthur drinking coconut juice, our van which was the size of a small island, Jet skiing, Loquillo Beach, fried foods, tropical drinks, celebrating Lisa's birthday, lots of laughs with Cathy and "Nick", our Trip to the Rainforest, visiting Ron's Aunt's house, Old San Juan, spending time with my handsome nephews, laying on the beach and getting to be with great friends and wonderful family in one of our favorite places, Puerto Rico.

When we arrived back in New York I turned to Dylan and told him that I was very proud of him and that he did a great job on the trip. He turned to me and said, Mama, thank you for taking me to Puerto Rico and making this trip happen. I know you worked hard to get us there. He then asked me when we could go to Hawaii!! Definitely to be continued.....

Old San Juan

Alyssa & Heather at Il Convento

Andy & Adriana, what a beautiful couple!!

The Wedding Party!!

Mike & Heather

Heather being Heather

Heather dancing with Titi Lisa

Meeting Baseball Hall of Famer, Tony Perez who happened to be eating at the restaurant where the wedding was held.

It's not polite to stare

We have had a very busy holiday season as usual here at the Cuevas House. It was the usual house parties, dinners, visits to see Santa, holiday shopping, cookie baking, school concerts and other holiday madness that usually goes on here in December. We were even able to make it into the city to see the Tree (and freeze our butts off). I really enjoyed participating in some of Heather's school's Holiday Celebrations. She happily sang Rudolph the Red Nosed Reindeer on stage with her classmates and enjoyed holiday celebrations at school and dance class. Dylan's holiday celebrations were great as well with him having a Holiday Tea Party where he wore Pajamas with a Top Hat and Arthur wore a suit. Dylan also played in his second HVS Basketball Tournament and did a fantastic job. Team Dylan was out in full force that day.

When Ron and I were first married we would celebrate New Year's in Florida with his family. After Dylan started having complications with SMA and traveling without a nurse became more difficult this became virtually impossible because we didn't want to have a nurse be away from their family during the holidays. This year I asked Arthur if he would come to Florida with us for New Years and he agreed. The kids were bursting with excitement to see their "Florida Cousins" and we couldn't wait either. We had a wonderful week celebrating Christmas with everyone. Heather had her first official sleepover at her cousin Alyssa's house where she got to do all sorts of cool things like bake cookies, get a mani/pedi, and get tons of attention. Dylan got to sleep that day until 10:30 since Heather wasn't there waking everyone up. I did think it was sweet that Dylan and Heather both bought each other little gifts during their respective outings of the day and surprised each other when they were reunited that evening. We also had the opportunity to visit with Jennifer and Madison who are part of our SMA family. Madison and Heather had a great afternoon painting and playing dress up and I got to catch up with Jennifer who is one amazing mama. On that same day Dylan, Ron, Arthur and my nephews, Mike and Phil, visited my brother in law in Miami and Dylan soon learned how to chase pretty girls in Miami. What can I say he is charming just like his dad. We then rang in the New Year with Ron's family for the first time in a long time and I have to say I felt so accomplished that we were finally able to make it to Florida for New Years again. I thanked Arthur a lot because I know it wasn't easy for him to be away from his family, but he knew how much it meant for us to take this trip. We really had a wonderful time celebrating the holidays, Florida style. Many thanks to my inlaws and sister-in-law, Lisa for all they did to make our trip a special one.

Before we left to go to Florida, Dylan asked me if we were going to Disney. I had planned to stop at Disney to break up the drive but didn't tell anyone, not even Ron (well, I did tell him once we got to Florida that our stopover night was in Disney, not North Carolina and Maryland like I had originally told him). I told Dylan we were not stopping at Disney (with fingers crossed behind my back). Dylan replied...Mom, how can you drive me all the way to Florida and not stop at Disney? Anyway, we left South Florida and started heading up to what was supposed to be North Carolina. The kids were depressed to leave but my all too smart son suspected something was up. That along with the fact that he can now read the signs gave our little secret away. Anyhow, the kids & Arthur were very surprised and excited to spend the day at one of their favorite places but we had a lot to do with little time. We were crazy Disney Park Hoppers that day. We have never been to Disney during the Christmas Holiday week. It is absolutely insane there. It is super crowded and people are super rude. As Heather gets older she is becoming more aware that not everyone has a sibling who is in a wheelchair and on a ventilator. When we were walking around I noticed she was becoming a little upset.
What is wrong, Heather?
Why are people staring at Dylan?
(Crap) Well, sometimes people have never seen a little boy in a wheelchair.
Do they think he is weird?
Maybe.
He's not.
I know.
I don't want people to stare at him.
Then when you see someone staring at him tell them that it's not polite to stare.

I sometimes forget how the staring first used to enrage me. It would sometimes drive me crazy and send me into a complete tailspin and fury of feelings. I am over that now and I almost chuckle when people stare at us. SMA will not hold me back, I am not going to feel self conscious of that and deprive Dylan of something I want to do or I think he will enjoy. I once had a woman say to me, I can't BELIEVE you take a child like THAT out of the house. After much self control I responded, Really? Well I am glad I am his mother and that you are not.

As we were on line for one of the rides there was a little boy staring at Dylan. Heather went over and said to him....It's not polite to stare. This is my brother Dylan and if you want to meet him I will introduce you to him. The little boy jumped into his mother's arms and she apologized to me. I told her there was no apology needed. Later on Heather and I had another conversation.
Mom, I told that boy that it wasn't polite to stare and he still was scared of Dylan.
That's true, but it was brave of you to stand up for your brother.
Mom, someday someone will say yes.
To what., I said.
To me introducing them to Dylan.
I am sure they will, I said.
Dylan smiled and told Heather he loved her. Very proud of my kids.

Team Dylan



Us with super SMA Mom, Brittany!



Ready for Santa

Christmas Morning

Celebrating Christmas in Florida

Heather and Madison

Heather being Heather

Heather and Alyssa

New Year's Eve at Lisa & Bob's

Lisa and Dylan

My father in law, Orestes

The party animals.

Wait, this doesn't look like North Carolina...

We are stopping WHERE??????