Freaking out about seizures, Baclofen, and surgeries.

I try to live my life one day at a time and enjoy each moment not to drive myself crazy. Some days I fail at that. I have too much information right at my fingertips which can be good and bad. The neurologist has already mentioned baclofen in Sophie's future. Maybe through a pump. I have seen what this looks like and I am really scared... From what I gather most cases of spastic diplegia require surgery, add that to my worries. The Orlando Doc said that since Sophie had not experienced any seizures to date that the chance for any major seizures is low, hmmm... don't know if I should feel so great about that. All I can say is that I am really scared. I have been through a lot and I am still standing, I am an ironwoman because my kids and my husband need me. Now... how much can this iron woman take before braaking down? I don't know. Every now and then I let myself cry hard about things to make sure that I am not building up negative feelings inside and can continue to do what I need to do for my family. Last night I watched the video about Ben and I cried for about 20 minutes. The story was moving and it kicked in that is OUR reality for the rest of our lives. We are different and things will be different for us and for Sophie and that is Grand, I am not complaining, I love my life the way it is, the only thing I would add would be my daughter Grace. Our lives are filled with corkiness, I love you's (not the kind you just say, the REAL I love yous) lots of surprises, subject to change, different, hugs, family, urgency, caring individuals, strenght, outings, and the occasional naps. My family is what it is because our experiences have made us this way. We are knit together, there for eachother, always. And we are not afraid to be corky. Of course there is the more than occasional fight butwe know that we must forgive, forget, and move on because we only have eachother. My family is my life support, without them, I cannot be the Iron woman.

Milestone at 17 months old

As I was playing with Sophie inside her ball pool, I stopped giving her support on her back and she was able to hold herself unassisted for about 45 seconds woohooo!!!! First time ever!

Wishlist-17 months old

I feel very guilty sometimes because it is very difficult for Sophie to play like a typical 17 month old baby. For any type of play activity we do with Sophie we have to be 100% involved to make sure she is safe. She has to be held all the time whether she is sitting or standing. I have been doing research trying to find things we can do with her for fun. Going to the playground is always an option, but again it is a 100% hands on activity. I came up with this wishlist of things that we need to make Sophie's day more enjoyable and active. -Free concepts bike- this is a therapeutic trycicle made for children that have cp. She would benefit so much from it because it would help her with much needed muscle work in her legs. http://www.freedomconcepts.com/fc_products/f3-bike-series/discovery-series/dcp-mini/ -Music together music lessons- this would be not only a fun activity that will enrich her growth but also help her use her hands and keep those muscles active by leraning to play music instruments. -Bath chair- As she grows slowly but surely, Sophie can no longer fit in her infant bathtub. Bathing her in the big bathtub is out of the question as she cannot hold herself in a sitting position. I will continue to add items and ideas as I am able to find them.

Siblings and Therapy

This is really the most difficult part about going to therapy six times a week. Keeping my five year old son busy during Sophie's therapies is a challenge. He starts Pre-K at 1pm and all the therapies are in the morning. I am noticing that he wants attention for him too because during therapy time is all about Sophie. He waits exactly for the moment when I have to answer questions and starts yelling "Mama", look at me, look at this. Anything to bring attention to himself. Since they offer swimming lessons at the therapy center, I signed him up for lessons there so that he would receive attention during his time. Unfortunately he didn't like it and we ended up losing the last 2 classes. I continue to think of ways to help him get involved and guve him the attention that he deserves too.

The Big Surprise-This is how it all started...

Can you imagine having to choose between two of your children? Having to choose which child will live and which one will die? . Praying to God to make that decision for you. Praying to God so you wouldn't have to make that decision at all. Can you imagine hoping for a miracle that would save the lives of your two children so you don't have to choose.

That is exactly what  happened in September of 2011.

Part One-
I knew that I was pregnant with twins right from the start. I had gone through an IVF procedure which made my dream come true of becoming pregnant for the second time. Two embryos were transferred and I couldn't stop throwing up, even from before I found out that I was pregnant. The test came out positive and my stomach would get more queasy by the day. It was week 8 of the pregnancy and time for the first ultrasound. The doc saw 2 sacks right away and confirmed that we were having twins. The first heartbeat was easy to detect. He did some searching and just as he started to say that the second baby would not hang in for too long or it may even be an empty sac, there it was. Strong second heartbeat.

It's TWINS!!! The doc said to us.

I was happy and scared at the same time. I looked at my husband and smiled. I looked at my son and said: "You are having two babies!" The nurse joked around saying to my son that he would go crazy if it were two sisters....

PART TWO-
I have one word for the first trimester of my twin pregnancy: NAUSEA. Pretty severe nausea. By week 16 I had already lost 20 lbs. I attempted to take Zofran, prescribed by my doctor but I got very constipated and decided only to take it for about 3 weeks.

By week 16 I went for my first visit at the Perintologist. I was all by myself, most doctor visits were just me my husband worked many hours. That day I got to see my beautiful babies for aa long 45 minutes. Twin ultrsounds take very long. That day I was also to that we were having two girls. The were both measuring good. However, one of the twins was measuring slighly smaller, which had always been the case at my OB visits. There was nothing to worry about.

Part 3- oops everything was not ok... I guess the Peri forgot to tell me that one of my twins (the smallest one) had an Omphalocele. An omphalocele is a sac that protrudes out of the belly button. It can contain one or many organs inside and basically means some of the organs of the baby are growing outside of the baby's body.


WEEK 18 of twin pregnancy- By now I was making bi weekly visits with the Peri and considered a high risk pregnancy, only based on the fact that I was having twins, nothing else. It was time for another sonogram. One that would change my life forever. I was called into an office that day right after my sonogram. Right then I knew that something was wrong with one or both of my girls, yes, that day it was confirmed that we were having 2 baby girls. The Peri closed the doors behind her as soon as she came into the room. And then she started by telling me that twin A was slightly smaller than twin B but they were both measuring on track however Twin A had an Omphalocele. Now this Omphalocele could contain just intestines inside or it could contain some of the baby's organs. The last situation would be best believe it or not because it was a lesser chance that the Omphalocele was associated with a genetic disorder. The cure would be surgery either at birth or later on after birth. If surgery could not be done at birth then the Omphalocele would be covered until surgery was feasible. Most babies with Omphalocele s also present heart defects. As the doc explained all these major details to me, I listened in shock, tears began rolling down my cheeks. Why is this happening? This was definitely one of those You have got to be f***ng kidding me moments. Then she went on to talk about statistics how one in blah blah blah bla..... she also explained the last imperative detail, you know... I could kill my child if I couldn't bear the news that she would need special care. That is not an option doc!!! Is that clear? Omphalocele, genetic disorder, down syndrome, bring it on! She is my kid no matter what strange medical stuff is going on with her. I doesn't matter, I dont care, I want my little girl. So next the doc said she would refer me to a pediatric cardiologist who would do a sonogram of the heart for both babies to determine if any heart defects existed. She also said I should have an amnio done to anticipate for any genetic disorders. This way if any of the twins had any genetic disorders the medical team assisting the birth if the twins could be ready to act if any special care is needed. I was to have this done that very same day. I said yes, and this I will regret forever. Also, I was to give birth via c - section and at a hospital with a highly trained Neonatal Intensive Care Unit.

Part 4- THE AMNIOCENTESIS
There I was, ready for the amnio. First, the doc would star an ultrasound to keep an eye on how the babies were doing during the procedure. Then, she would insert a dye into one of the sacs in order to make sure that she didn't draw amniotic fluid from the same sac. So she poked my tummy with a gigantic needle that went on to insert the dye. She chose baby A (Grace) 's sac to put in the dye. The the doc pulled out a small amount of amniotic fluid that was to be tested. Then she poked my tummy again, but this time she pulled the fluid from the sac of Baby B (Sophie). I was to rest for the remainder of the day. She would call me with preliminary results in 2 days. And then with FISH results in 7 says. FISH were more detailed results of genetic testing.
3 days later I got a phone call with great news! My girls were free of genetic disorders. They both tested negative for down syndrome among other genetic disorders that could be detected with the preliminary testing. What a relief, now I just needed to wait for tge FISH results. I was relieved, afterall the Omphalocele wasn't looking so bad anymore when compared to possible disorders that could affect my daughters.

Part 5- IKEA
A couple of days went by as we researched online how many days the FISH results would take. Unfortunately for me, the results came earlier than expected. I decided to take a walk around Ikea that day. I had some great finds in my hands. I had a couple of baby girl towels for the twins and some organizing boxes for my son's crayons and drawing supplies.  My phone rang as I walked, it was the Perinatologist, herself.  Not the nurse, not the assistant.  I immediately knew that something was terribly wrong. I had a bad signal so the call dropped a few times before I finally walked to a good spot, talk about a nerve wrecking moment. I heard Dr. Say, Twin A tested positive for Digeorge Syndrome, also called 22q deletion syndrome. I began to cry and as I listened to Dr. Explain that my daughter will either be severely disabled or die. I ran, ran, ran, trying to find an exit to that stupid store that felt like a maze with no way out. I wanted to scream, just get me out of here!

Part 6- The Twins love to play, the twins can do backflips too.
Sitting here, thinking back, I never imagined life with Sophie but without Grace. They had become like Salt and pepper, like Max and Emme, like Carrie and Samantha, like coffee and donuts,  like thing one and thing two. In fact, that's what we called them, Thing one and Thing two. Ever since I was a little girl, I dreamed of having a baby girl. All my life I spent hours coming up with girl names, so the fact that I was getting to pick two girl names was my dream come true. One night, I sat on our dining table and grabbed a pen and a piece of paper. Gregory, Daddy and I began to brainstorm names that we would vote on later on. I had always loved the names Victoria, Grace, Katherine, and Sofi. In my dreams, I failed to realize that there would be a Daddy who would want a part in picking our daughters' names too. After much brainstorming and much voting, Gregory gave the final decision. He picked the names Sophie Elizabeth and Grace Katherine.  The names were perfectly fit for our two princesses.
Sophie and Grace started to move so much, day and night. If Sophie moved, Grace would move. I could tell the difference between each baby's movements.  They were both very active little babies. Every week, we got a glimpse of their lives inside my belly, they kicked eachother,  played with eachother.  Grace loved to suck on her tiny thumb.
At our next appointment,  we got sheduled with the geneticist.  Both Daddy and I would be tested for the presence of any genetic diseases, 25% of 22q deletion syndrome cases are inherited. On August 1st, 2011, we received information on what Digeorge syndrome was and what our lives and Grace's life would be like living with Digeorge syndrome.  There could be a number of medical conditions associated with Grace's diagnosis including: seizures, cardiac defects, cleft palate, small eyes, vision problems, strokes, small brain, slow brain growth, spina bifida, developmental delays, small limbs, and a weakened immune system. We were to make a decision whether we wanted to terminate the pregnancy for twin A only within the next few days as we were fast approaching the 24 week deadline. We immediately told the geneticist that would not consider that option. We waited for our test results as we hoped that one of us tested positive. If one of us had Digeorge, our daughter had a great chance of living a normal life. Our parental FISH  Analysis came back negative.
During my next ultrasound, I asked the tech to check for cleft palate, the answer was no, Grace did not show a cleft palate. She was a happy baby, a perfect baby, slightly smaller than her fraternal twin.


Part 7- Your dark and scary office is is giving me Pre-eclamsia, I swear doctor.

A little background. What was I thinking?

My daughter always scissored her legs, since she was discharged from the NICU. I never thought anything of it and no one ever mentioned to me of the possibility that this may not be normal for a baby. Looking back, I feel like I was in shock for the entire first year of her life after having lost her twin sister to Digeorge syndrome when she was just five days old. I will talk about that story on a separate post.

I asked her ped several times what to look for as for milestones and she always said not to worry because premmies don't catch up with their milestones until they are two years old. I remember seeing all the babies that were born after her reaching their milestones and feeling a sense of jealousy mixed with confusion.  At one point, a baby was born in my circle of friend and I remember thinking to myself I bet that baby will sit before my baby. A little after she turned one, I began to ask myself: How is she going to catch up overnight? If she has not reached her 6 month old milestones, I don't think this will happen so quick that she will be sitting and walking by age 2. I began researching online and continued to run into the words cerebral palsy. As I continued to read and go down the list of signs, I realized that it might be a possibility that my baby would have cerebral palsy. I brought this up to her physical theparist and Ped, who both said maybe. I felt betrayed because no one had mentioned this to me and still they were not telling me what I should do. I asked them both, so if she does have CP what do I need to do? They both said that we would need to continue therapy and she would eventually walk. The PT recommended that I take her to a Physio and so we did... I was not interested in taking her to a neurologist as I felt that whether or not she had CP, the course of action would be the same so why stress myself right? Well as I learned more and more about CP I changed my mind and went to the neurologist. She told me right on our first visit that Sophie had Cerebral Palsy. She said that my daughter must have received an injury to her brain either during birth or maybe before or after.  There is no way to know and there is no cure for cerebral Palsy.  She ordered an MRI which, according to her would tell us the extent of the injury.

We took Sophie for the MRI early January 2013. I scheduled the appointment to get results 2 days later...

According to the neurologists the MRI confirmed her diagnosis of cerebral palsy. My heart almost stopped for a moment. The doctor left the room really fast. I had no idea what to do next.

17 months old - This is the beginning of a difficult but rewarding journey.

This is my first Post. My daughter is 17 now months old and diagnosed on November of 2012 with Cerebral Palsy (Official diagnosis was Cerebral Palsy with Spastic Ataxic Diplegia)  She was born premature at 27 weeks and her weigh was 2lbs at birth.
I have not been able to forget those three words since the moment they were told by the neurologist as she was reading the MRI that revealed why my daughter was still not rolling over, sitting independently, or standing at 15 months old (11 months adjusted).

This is what she does as of today. I know that as parents we look for other kids the same age online with the same diagnoses to see compare milestones, etc.
Verbal: She says about 5 words clearly, and mimics sounds she heras from anyone.
Recognizes brother daddy, and mommy.
Is very smart, can recognize letter A,B,C (I teach her the alphabet on a daily basis as I did with my son)
Moves hand up and down to signal hello or good bye. (Modified wave)
Claps mostly bringing her right hand to her left.
Stands while held by her arms by someone with and without AFO's. Gets tired after about 2 minutes and falls down on the floor. She turns feet inward while standing. Sometimes I get scared thst her legs are going to break since she is so thin.
Reaches for toys with left and right arm. Right arm dominates.
She is still unable to roll over, sit or stand independently.
She is very social, makes eye contact, and says hello to any passerby.
She has difficulty using her left hand so much more than her right hand.
She refuses to eat anything solid including pureed food. Her nutrition consists of Pediasure and Gerber goodstart formula mixed with wheat cereal. She takes Prevacid twice a day and daily Curturelle Probiotics.
Therapies: we have six therapies per week. Physical, occupational, and feeding/speech. In any given month, Sophie is seen by a minimum of 3 Doctor specialists.