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.