Heart worries

Ironically as I wrote yesterday about Hayden's heart I receive an email today about scheduling his cardiac appointment. I am relieved to go back again but nervous at the same time. I hate that Dr. Google has me so stressed about Hayden's cardiomegaly. I worry what this means for his future, I worry that I need to see a cardiologist, I worry that my baby girl needs to be checked out, I just overall am worried. I feel like I have taken a million steps backwards in his journey. We have been on such a great road. A road filled with negative test results, a road with a diagnosis of cerebral palsy, a road of positive improvements and then bam. We are hit with the unknown heart condition. I am trying really hard not to overreact but it is so hard not to. I want this to just be his normal heart size. I want nothing else to be wrong for my sweet boy. Please let nothing be wrong with my baby boy. I wish his hard time would just turn into simple life. I am sure I will write about this some more but it felt good just putting my feelings down somewhere.

Merry Christmas xoxo

The holidays often bring on a time of gratitude. I know it is not Thanksgiving but I am just so thankful that my family is complete. My family of four.  I started out a few days before Christmas with one sick little boy. Hayden ended up getting Croup and Strep throat. What a double whammy right before the holidays. Luckily, I was able to get him into the doctors and on medicine right away.  I have been preparing for Christmas since Veteran's day. I thought wow all my shopping is complete I can put off wrapping presents.  So, I did I wrapped presents and baked cookies all on Christmas Eve.

Hayden was so excited this year. This is the year he finally gets it. Last year he loved presents but really didn't get Santa or the meaning of Christmas. This year we baked cookies for Santa and left him some milk. He was so excited to leave Santa a cookie and milk.  He also went to bed with no issues I think he knew something big was happening in the morning.  He woke up Christmas morning at 8:30 am which is early for my boy. My little man likes his sleep. I carried him downstairs and what joy exuded from his face. He could not believe all the wonderful gifts Santa brought him. He carefully opened all his presents one by one. He even left the two big gifts until the very end. I have not downloaded any pictures just yet from Christmas to post but I will sure to do that soon.  His favorite gifts by far were the leap pad, lightning McQueen race car and art easel. Of course the mom-therapist in me really loves the idea of the art easel. It can help him with standing independent.

I tried hard not to think about the worry I still have for my little man. I kept looking at my boy and my sweet baby girl and thinking things are still going to be okay. We have a wonderful family and Hayden is still doing really well.  I spent all day just smiling at how happy Hayden was.  Later that night my mind wandered about his heart. I do not know why but I guess I am still very worried what the enlarged left ventricle means to us. I Dr. Googled again and of course all bad things came up. I then gently reminded myself it is Christmas enjoy it. Hayden is almost 4 and has not experienced any complications thus far so it can't be that bad right? Ahh mother's worry is never done.  Well, I hope everyone had a fabulous Christmas I know Hayden did!

Santa's gift Shop

It has been a few days since I have written. What a busy week for us!  Last Thursday Hayden got to participate in shopping for us at school. He was so excited to buy his gifts for mommy, daddy, and baby sister Julia. The para's at school said he even wanted to get our dog Cody a gift but they did not have any items for dogs at the school store. The presents came home in Hayden's back pack. I told Hayden we would place them under the Christmas tree. Little did I know they would not last there for long. Hayden was too excited to show us our gifts he decided to open them for us! I hear from the living room Mommy look a pen for you. I went to the living room to find him unwrapping our Christmas gifts he bought. He was so proud of his purchases. He bought me a pen that says #1 mom and a Christmas ornament that says I love mommy. Bob got a clock that says #1 dad and he bought Julia some sort of squishy ocean toy. I have yet to figure out what it is. I have to say I think this year is going to be the best Christmas. Hayden finally gets what it is all about.  I had so much fun shopping for him this year as well.  The joy on my little man's face makes it all worth it.

I  have to commend my little guy on a great job being an independent little man buying his family gifts.  I will cherish these gifts for my lifetime. These are one of many of the first steps of independence for my little guy.

The Venue is booked

I finally found time today to booked Hayden's birthday party. I am sure you are wondering why this may deserve a post or how this relates to my exceptional little man. Well, we are having his forth birthday party at a great indoor soft play family fun center.  I have struggled with places to have Hayden's birthday party.  He is at the age now that I feel like a party outside of our home would be enjoyable. I have literally searched for months for the perfect venue.  Finally, over the summer just before Julia was born we took Hayden to the fun center. I have not seen my little boy more excited.  I vividly remember just smiling as I watched him crawl through the soft play area, play ski ball, basketball, and bowl.  At that very moment I felt wow this place was made for little boys and girls just like Hayden. I do not think the owners realize how disability friendly the location is.  To see my little boy independently play was amazing.

Yes, my husband or I will need to supervise just in case Hayden gets pushed aside but he can do it! He can climb all the way to the top of the soft play equipment and go down the slide. He can climb through a rope bridge and through a tunnel all by himself. That is right I said it independent and all by himself.  To see my little boy do this melts my heart.  As a mama to a little boy with cerebral palsy I could not ask for something better. Now, I count down the days until we bring Hayden to his birthday party with his friends and cousins.  I just know this day will be one of the best days of his life.

Therapy, therapy and more therapy

I have been struggling this week about Hayden's crazy schedule. I should be use to it right? I mean it has been almost 4 years that our lives revolve around doctors's appointments, evaluations, tests, and therapy. Why has this week made me feel a sense of being overwhelmed? Maybe it really is not this week but all of the time adding up to this week that has brought me to this moment. To put it into perspective Hayden goes to preschool and he receives all of his therapy there. He also participates in horseback riding and an additional physical therapy session weekly at AI Dupont Children's hospital.  I love his therapist and it is nothing about his therapist but I am thinking of reducing his therapy from once a week to once every other week. However, I struggle with this decision because I worry that his doctor's may frown on us for not keeping our crazy schedule up. I worry this may harm his progress.  Then I think he is so active in school, walking to the gym and playground, cruising around the classroom, and climbing in and out of his stroller at school.  He comes home and he is non stop using his muscles.  Yes, we are working on teaching him walking independent/dependent with equipment. Yes, we are trying to figure out new AFO's.  Why is this decision so difficult?

Wednesday like any other Wednesday is spent going to preschool and physical therapy in the evenings.  During this session I had some questions/concerns I wanted to talk about with Hayden's pt.  My little man uses a crocodile walker for his mobility in the classroom.  We loved it because it was sturdy, has anti tippers, and a pelvic strap to avoid falls.  Well, during Hayden's updated IEP I kept hearing over and over how big it is. How, it is hard to maneuver in the classroom, etc, etc.  I was taken back by this comment. Isn't school suppose to adapt the classroom around my son's equipment so he can participate like a typical 3 year old?  The shocking comment was from his physical therapist at school. I left his IEP meeting feeling sad not knowing how to address the comments that I heard.  I finally got a copy of the revised IEP we agreed on and it was written in the notes too.  My husband said yesterday when he dropped Hayden off to school the para even commented how Hayden really wanted to do something but the walker didn't go up to the sensory table.  I know this is a lot to digest but really it leads up to our Wednesday physical therapy session.

We met with our pt and I gave her a copy of Hayden's updated goals and explained to her the concern the school has with his walker. She was shocked as well. So, we tried Hayden with a Nimbo walker. It is similar to the crocodile but is light weight and might be able to maneuver better in the classroom. Previously, we could not use a light weight walker because Hayden relied so much on the walker for support. As I am writing this post I realized I need to celebrate that for just a moment. Wow, he doesn't need the walker for a ton of support anymore. To those moms not familiar with having to deal with equipment this is huge. Maybe I will finally have a walker that we can transport easier. woo hoo!! He did surprisingly well in the new walker but he was so scared. He was scared to fall we had to constantly reinforce him he was safe. I always feel so bad that he has this fear of falling. That is another obstacle we need to overcome.

After our walker talks we talked about independent standing. We cannot figure it out. He can stand at a wall for awhile, he can stand holding onto to something, he can even stand a few seconds to a minute without any support when we let him go and he does not realize it. I know a few seconds to a minute does not seem like a long time but in our world this is huge!  I told the pt we think he has a fear of falling he is so afraid to not have support. This is something I worried greatly about with all the equipment that Hayden utilizes. I worried about dependence and my skepticism is coming true slightly. Now, I am not anti equipment. In fact I support it 100% without it we would not see the progress that Hayden has made. Accepting it is sometimes a challenge. At first I was really sad that my son needed something but I got over it in time. My line of thinking has moved from fear of what people would say to him or us to this is what is right for my son. We do have to deal with questions from younger children of why does Hayden need to use a walker? I think we will have those questions whether it is now or years from now. It is how to learn to address them and move forward that is important. Okay, back to independent standing we are going to try a few things during pt and I spoke to our good friend and previous physical therapist for Hayden through early intervention.She gave us some fabulous ideas to try as well. Some suggestions were to use a rope having him hold one end. Or having him trying to stand and helping him to gracefully fall. That is the real fear, the fear of  falling we need to get him to cognitively understand how to fall. Everything Hayden has learned gross motor wise has been through lots of repetition and cognitively.

Our new pt homework will be all about balance and falling. Here is learning these things that we take for granted every day. Simple things like learning to catch ourselves.  Oh, how I wish I could make it easier for Hayden. I would give anything to make things easier for my sweet exceptional boy.  I find myself at times going back to that place wondering why my little man struggles with the simple tasks of life. Why he had to be chosen to persevere through the trials of every day life? Then I quickly remember why things happen.  This happened because he was the right little boy to move beyond the disability.  This happened because I needed to appreciate all that life has given me.  This happened because I was suppose to be that voice for my exceptional little boy and many other little boys and girls like my son. This happened to open my eyes to the world of possibilities.  This happened to make my family the beautiful family it is. I try not to let myself go to that place too often anymore like I once did a few years ago. Hayden is happy, Hayden is loved, Hayden truly represents the uniqueness that we can celebrate in this world, Hayden provides hope to many, and most of all Hayden is the very center of my being who I am right now at this moment.

Pure Bliss

Much of this blog will be about my sweet exceptional little man Hayden but I needed to celebrate some things for my baby girl. It has been a pretty exciting few days for Julia. Despite my disappointment in her first words choice my little girl is saying dada. I often wonder why that is easier than mama but it has been for both my children. It is amazing how even hearing dada sounds cute. I think us mamas just wish they would call us first but I still know she loves me, so I guess using the word disappointed isn't exactly true.  We also discovered our feet and a big surprise for me last night was sleeping 5 hours straight. Woo hoo!! Oh, how I missed sleep. I thought she would be a great sleeper like Hayden but she has given me a little bit of a challenge in that department. Here is to hoping we continue on this accomplishment.

Yesterday, may also go down in the books as a moment I would like to cherish with my little man.  It was my husbands birthday yesterday. Hayden was so excited it was daddy's birthday. He went to school and told his favorite para that he was going to bake a cake for daddy. I picked him up from preschool and sure enough he still remembered we were going to bake a cake for his daddy. I love the time I have with my man alone. We don't get that too often being a family of 4.  So, I took my lunch break from work and we made a birthday card for my husband and painted pictures. The smile on Hayden's face was priceless! Then we had the real fun we started making his cake. Hayden helped me mix the cake mix and pour it into the cake pans. I have not seen him this excited besides maybe looking as Christmas lights. He loves Christmas lights.  Once the cake was finished he even helped frost the cake. Now, I am no baker but I think we did an excellent first time job.  If I can figure out how to load a photo to this post I will post a picture of our finished product.  I think what made this one of the best days is just how happy Hayden was doing this. He sat on the kitchen island holding his happy birthday card for his daddy and yelled Happy Birthday Daddy as my husband walked through the door. I don't think it gets any better than that. Right?

Exciting Morning

Today started out as I would deem a typical morning in our household. Julia, Bob and I are awake and Hayden is still sleeping. It is 9:30 am and we wait on Hayden to get up.  He is such a great sleeper. Always has been. We are blessed in this category.  Now, his sister on the other hand is my early riser, my girl who is afraid to miss something, my girl who at 5 months today!! still does not sleep through the night. Sigh :(  I was on the computer checking out my item selling on eBay. Super excited about that because it was my first time and I have a bidding war.  I also was downloading our professional photo's for JcPenney's to my computer when I hear my sweet boy calling. Mommy come get me.

I went upstairs to get my exceptional little man we start to get dressed and I saw the sign of going number 2. I am sure years down the road he is going to hate I am sharing this story with the world but that is what mommy's do right?  So, I told him let's go sit on the potty and go poopy as we call it in our house. We left Julia in the swing downstairs.  Bob and I sat with our sweet man until it happened. That is right we pooped on the potty. This was amazing we have been trying this forever it seems.  He finally did it. So, we promised him after he ate his pancakes for breakfast we could go to the playground. Pure excitement beamed from my little man's face.  After he quickly ate those pancakes we spent about an hour at the playground. Luckily, my neighborhood has a playground set that Hayden can use despite his disability.  He loves crawling back and forth on the ramps and going down the slide.  This is a place he can feel free and play like everyone else. Now, we are home. I am blogging, Hayden just had lunch, and is now watching the Fresh Beat Band. Life is good!

I told him I am going to make a potty chart. Once we fill it with stickers he gets to do something special or pick something special. Let's hope he doesn't ask to go to Mickey Mouses house or Elmo's house. He loves them and wants to go back to see Elmo all the time.  I also want to take him to see Mickey soon. Maybe in 2012 or 2013 we shall see what the future holds for our visit to Florida.

Now, if we could only get that specialized potty chair in we ordered. I hate that as a special needs mama it takes forever to get things for your child. It took us forever to get his walker and now his potty chair. We have been waiting a month.  He is able to use the regular potty but it is just so much harder for him. Unlike us he has to focus on holding himself up and then going to the potty. We can't wait to get the potty chair to relieve some of his struggles. Life will be so much easier.  Stay tuned for some more exciting potty blogging post. I hope to have many more to share!!

Hayden's Story

For those that know and those that may not know. I have an exceptional little boy named Hayden.  He was born with a medical condition called hypotonic cerebral palsy.  This is only about 10% of the cp cases.  My sweet little boy met that 10%. Some tell me they are sorry to hear about my son's disability but you know there is no reason to be sorry. He is bright, happy, funny, and will light up everyone's world he meets. I won't say that our road has been full of rainbows but we have many more wonderful memories than bad.

When I knew something was not quite right?  I think around 9 months I thought hmm my happy sweet boy is not sitting or his own. He is not pulling to stand like other kids or bearing weight on his legs. Here is when our roller coaster ride for 2.5 years began.  I spoke to my son's pediatrician who I adore. Really love him!! I can't praise him enough for his compassion and interest in my son but enough about my doctor we will talk about how we got to our diagnosis.  After I met with my son's pediatrician we went through an evaluation which I will not pretend was pretty.  I cried, I was devastated, I thought to myself why did this happen to my sweet boy. I can remember vividly crying and calling my very best friend Mickie who tried to comfort me the best way she could. She just listened. That is what I needed at that very moment.  For the longest time we were told Hayden had hypotonia. Those not familiar with that medical term it means low muscle tone. This impacted everything that Hayden did from learning to sit, crawl, stand and start to walk.  Well, after we qualified for services we started receiving physical therapy and occupational therapy from Easter Seals.  Two wonderful ladies came into our lives Denise our pt and Colleen our ot.  Honestly, they got me through some very trying times.  They were there teaching my little man how to do all the things we take for granted every day.  Hayden learned to sit at the age of two, began to crawl at 2.5, and learned to walk with a posterior walker called a crocodile walker closer to the age of 3. Given Hayden's medical condition he also was delayed with his speech Easter Seals also provided us with a great speech therapist who boosted his language in preparation to transitioning to preschool.

We still stay in touch with our therapist. They honestly are like family to me.  Hayden now transitioned to the school system and goes to pre school at TECC. He loves it there! It amazes me to see my little guy walk to his classroom with his walker.  He is talking so well now too.  He is just the best little boy you will ever meet. We think he has a future in politics.

I cannot wait for everyone to read more about his adventures.

The World of Blogging

Today I made a decision to start a blog. I have seen so many of my special needs mamas start a blog. For some it has been a release of stress, for others it is about keeping family and friends informed, and some use it as a way to educate. For me it is all of the above. I have gone back and forth on whether or not I want to post our story. I ponder the thought of no privacy but really whose life is private anymore right? Plus, our story is of hope and strength. Why not share that with everyone. I have a lot of catching up to do since I am now starting to document our adventures at 3.5 years into our life with kids. Hey better late than never.

Just some back ground. I am married to my college sweetheart. We were married in 2004 and it was amazing despite a small hurricane that passed by on our wedding day. We set off on our life adventures in 2004 enjoying our honeymoon, working on the purchase of our second home and endless travels as a couple. We decided it was time to make our family a family of three. We already had 2 four legged children why not add another into our life. In April of 2007 I found out I was pregnant. It was the best news I could have wished for. We had been dreaming of the day of a positive pregnancy test and here it came. August of that year we found out it was a boy!! My precious baby boy who we named Hayden. I have been fond of that name ever since I babysat a little boy who was my love at the time many years ago. I always thought that would be my sons name and thankfully my hubby agreed. I went through the 38 weeks of pregnancy not complaining too much. I mean I was tired and sick in the beginning nothing to bad. We joked about Hayden coming before his due date of 1/12/2008 for a tax deduction. Little did we know that was going to come true. On December 30, 2007 my water broke at 9pm. At first I was not positive it was my water because when you are that far along things are out of whack anyway. We called our neighbor, called the doctor and off to KGH we went. My labor wasn't too terrible. I got an epidural which for me was painful, had some sickness due to pitocin, and was tired by the time my baby boy arrived. He made his grand entrance at 5:33 am on December 31, 2007. I remember this day like it was yesterday. The first time I saw him I fell in love. I cried because I was so happy. He weighed 6pds 15 oz and was 20 inches long. My sweet little boy. We ended up spending a week in the hospital since I suffered post partum hemorraghing. That was not a fun adventure. I lost half my blood supply and refused a blood transfusion. If anyone knows me I am such a worrier and was scared about contracting something from the transfusion. It took me months to feel better again. Looking back now I probably would have opted for the transfusion. Life was great when we came home. My baby boy was eating and sleeping well. We were first time parents so we really didn't know what to expect. I will write more about my exceptional little boy soon!

Fast forward 3 years or so. In October of 2010 we got our positive on our pregnancy test! To my dismay I bought six tests, yes six to confirm the positive. We got pregnant quicker this time so I really didn't believe the first test. Silly me!! In February of 2011 we found out we were having a baby girl. Of course little miss as we call her was not cooperating so we didn't believe it was true. We opted for a 4d ultrasound and there she was showing she was a baby girl. The best photo is of her sticking up her middle finger at us. Not once but twice. We knew we were in for it from that moment on. We named our baby girl Julia. She arrived on July 10, 2011 six days late. Funny, how my first one was early and my second one was late. She almost got evicted on July 12, 2011 but I am happy she came on her own. This labor was remarkably fast. My water broke at 5:00 am. Although, I think I may have started early labor the day before, I could barely walk down my deck stairs because I felt like she was falling out. This labor/delivery was night and day different than with Hayden. We didn't experience any of the heart rate drops or need of oxygen. I barely was able to get my epidural because I dilated so quickly. She was born at 11:32 am on July 10, 2011 with 4 pushes in a total of 10 minutes!! She came out yelling and moving her head. I took one look at her and my heart just consumed with love. I was worried how I would love two children but I did. I felt an instant bond with her. I couldn't believe how much she looked like her big brother Hayden with the exception of a full head of hair. Hayden had hair but not like hers. She was a big girl too 8 pounds 2 oz and 19 3/4 inches. I thought the scale was wrong because there was no way I was having an 8 pound baby. Later that day had to be the best moment of my life. Hayden came to see us. He was so excited to hold his baby sister. Pure love!