Happy 6th birthday Hayden

I am two days late writing this post, but the holidays and someone's special birthday kept us very busy. I would not change anything over the last few days accept for the fact that my first born is now six.  Six seems so old and I truly miss those days of cuddling. However, I am going to embrace the older version of Hayden. The older version of Hayden has accomplished a lot in his six short years. Every year I write a letter to my children and I do not want this year to be any different. This will not be a normal blog update, but a letter to my wonderful baby boy.

Dear Hayden

Wow, I cannot believe you turned six on December 31st.  I knew there would be a day you would grow up and no longer be my precious baby boy.  You are now a amazing young man!  This last year we finally found out about your diagnosis of cerebellar hypoplasia. It made all those years of tests and waiting worth it.  However, this year was not just about a diagnosis it was about a huge transition to full day inclusion kindergarten. I am not afraid to admit mommy was nervous. Mommy was not ready to send her baby boy to school full time. I was worried how you would manage a long day, how your new teachers & para would care for you, how you would maneuver in your walker all day, would your classmates accept you, and if you would have new friends.  All those fears were not warranted. You surpassed all my fears. You manage school with ease, your teachers and para's believe in your abilities, and friends you have many.  I love coming to school and seeing how much they adore you. They see you for Hayden and not your disability, which is all I ever wanted for you.  You are not treated differently and I love that! 

Now, as we celebrate your sixth birthday I look at all the big accomplishments you made from 5-6.  You are now able to talk in complete sentences. Those sentences are well thought out and legible. You utilize your walker as your first means of independence during the school day. You completed a five minute jog in gym class! This my dear son is an amazing task, not many adults are this active.  You learned how to write your HAY and den will come soon, I just know it.  Color recognition is coming along.  You are working hard at learning your site words and recognizing numbers. You love coming home practicing how to count. You competed in your first Special Olympics basketball skills competition with a peer buddy. The look of accomplishment on your face will last with me forever.  Outside of academics you are truly one amazing little boy. I love your sense of humor, you have such a kind heart, you are a hard worker, you always try your best, you love your family, especially your sister Julia. Even though you fight with her sometimes when she takes your favorite toys.  You just smile and that smile lights up the room and makes an impression on those you meet.

My sweet Hayden I hope you had an amazing birthday and that you enjoy your upcoming birthday party with your classmate from school.  I love you to the moon and back my sweet boy.

Love

Mommy

Our big kindergartner

It has been such a long time since my last school update for Hayden. As you can imagine life is busy between my two littlest loves. Hayden has been in school for a little over two months. He went from 2.5 hours of school to about 7 hours ! Boy do I miss him, but he loves it. I admit I was extremely nervous. We left everyone we loved and who Hayden loved. However, this has been a great change for Hayden.

Hayden is in an inclusion classroom. I love it! He loves it! His new teacher is great and she gets it. Just like his previous teacher she truly embraces Hayden and supports inclusion. His class has a total of 21 students but Hayden is their only student in a walker. At the transition meeting last year it was recommended Hayden get a wheelchair. I respectively declined. I wanted to give my little boy a chance and you know what he is doing it. For the most parts he keeps up with his friends. We still have trouble with paying attention and drifting in our walker but those are things we can work on. He has always been a child kids love and this remains the same this year. I hope it will always be this way. He has made a few consistent friends. I love visiting him for lunch and seeing those friends sit with him. They tell me stories about Hayden that melt my heart. Academically Hayden is working on writing his name. He can write his H and A. He almost has his Y. We are going to start introducing typing, since his ataxia makes writing challenging. He is working hard learning to count to 100 and identifying letters. Geez kindergarten is tough :)

I had his first kindergarten IEP meeting. I dread those. Not because I am not prepared it is because I am listening to all the challenges Hayden faces. I always bring to the meeting some goodies and a letter about Hayden. I want them to remember we are talking about an individual child. For the most part we were on the same page. Some of my ideas the team already included in his updated IEP. I love that he has some of his same therapist/teachers. They truly have been able to see him grow. Our biggest hurdle still is gross motor. While he has improved there is transition time. I felt they definitely are allowing it but it still seems some feel it will present problematic in elementary school. At the end of our meeting a wheelchair was brought up. I get it and understand why the school feels it's the right choice. As a family we are not at that place to say yes we agree. Hayden is walking and keeping up with his peers. Sure it requires extra hands. I hope that will be less and less as he gets older. I still respectfully said no and will continue to fight. My answers are not always the most popular, but I know what my child needs. What we want the most is for school to always be on the same page and always support our goals. 

My dearest Hayden:

May you always be our comedian and continue to make us laugh. I hope you always remain happy and stay innocent to the negativity. I hope you always continue to work hard and show the world yes you can. I love your smile, your laugh, and your hugs. You are part of my heart always. 

I am so proud of you!!

How encephalitis made us a family of two with special needs

A year later after Julia's hospital stay and encephalitis rocks our world. Julia has recovered mostly accept for independent standing and walking. Reality has set in how lucky we are to have our baby girl and just how different our lives are now. Being a mom of one special needs child changed me and I didn't think there was more changing but there sure is. The process of IFSP ( individualized family service plans), doctor appointments, therapy and research has doubled. 

Today, Julia and I ventured to AI our home away from home for physical therapy.  I know you at wondering what is different about today's visit than any others? Today we went with a walker in tow for Miss Julia. A walker that I had to accept again for another child. I had a brief moment of not wanting a walker. That was short lived when I saw her just go. She got in that walker and knew exactly what to do. Of course being Julia her walker must have a ton of glitter. Luckily,  her therapist from Easter Seals understand my little ones sassy personality and decided to help her make it pretty. Julia spent an entire hour working hard in physical therapy. Harder than a two year old should. She desperately wants to run and play. Her mind believes she can do it however, her body is still trying to catch up. After her session I was amazed with this little girl. She refused her stroller and walked from pt, which is on the ground floor to the hospital entrance on the first floor. Sure it took us twenty minutes. My children sure know how to ground me and force me to slow down. Slowing down was nice.  I got to see her joy and how proud she was walking like a big kid. I also have another social butterfly stopping to say hi to everyone. 

AI DuPont is truly a special place for us. This hospital saved my baby girl. This hospital is our second home. What makes this visit special is all the encouragement I received from other families, staff, physicians and nurses. One doctor stop to say hello and to tell me Julia rocked that walker. He said I can't imagine her needing it long. I sure hope his prediction is right. I keep hoping and trying to pray to whomever is listening to heal my baby girl. I wish she didn't have to work so hard. I wish she never got sick and contracted encephalitis. More than anything I wish for continued improvement. Encephalitis is tough and such a scary condition. It brings new worry such as vaccines, worrying if people she is around have received live vaccines, are people sick, and understanding seizures. I will end this post with some photos of today. 

1 year post discharge follow up- Miss Julia

Sitting here writing this post seems a bit surreal to me. It is hard to believe on August 22, 2012 my sweet baby girl and I were getting discharged from AI Dupont Hospital for Children.  Being a mother prepares you for many things, but I do not think it ever truly prepares you for your child being admitted to the hospital. I do not think you every truly get what that feels like unless you have been in the situation.  Having one child who has a rare medical condition has made me more aware of things but, being hospitalized was unchartered territory for me. I am also amazed just like her birth I remember clearly every moment of our stay at AI. I remember how scared I was and I also remember how I needed to be strong for my baby girl.  We went home after a week stay with a diagnosis of Meningoencephalitis and post viral cerebellar ataxia. Ataxia was familiar to me however, I truly did not know what encephalitis meant or what it meant for Julia.

Yesterday, we went to our one year follow up with Dr. Bodak.  As any mother would be I was apprehensive of what this appointment would bring us.  Julia has recovered remarkably well in a year.  When she was first admitted to AI she lost everything a typical 12 month old child could do.  Julia had to relearn head control, how to sit, how to sit unsupported, how to crawl, how to pull to stand, and cruise. Julia had to regain fine motor skills such as picking up small objects and even her pincer grasp.  I am happy to report Julia has in fact regained those skills.  Julia has regained those skills and is cruising and climbing everywhere. Julia has taken independent steps in the pool and has stood independent for a few seconds.  She is starting to talk more and really, really wanting to walk. Right now Julia is walking holding our hands, cruising the furniture/walls, or using a baby doll stroller or shopping cart. She has even started to bear crawl, which is quite a talent. I went to our appointment with Dr. Bodak to report these amazing things, but I knew we still have things to work on. Her neurologist was quite pleased with her progress, but she told me she still has some time to recover. It could take many years. We just don't know how long because the brain is an amazing thing. Julia still struggles with balance, which seems to be residual from what part of her brain was infected by the virus.   She feels Julia will be able to walk on her own, however will more than likely need a cane or a cool walker like her brother before she steps out on her own.  What I did not expect to hear is just how serious this particular infection was. I think the doctors spared me the worry considering we have experienced some trying times already.  Now, that we are a year out I think they are comfortable in letting me know just how lucky we are.  You know what we are lucky we still have our beautiful baby girl to wake up to every day.  The other news is Julia's MRI is normal now and is showing re myelination. This is a huge win.  We wanted to see this happening.  However, Julia's EEG's are still a bit abnormal.  Little did I know she experienced a seizure before we got to the hospital a year ago. So, I went home yesterday with a prescription for Clonazepam. Now, this mom needs to learn about epilepsy and educate everyone that watches our baby girl.  We also were told again no vaccines for Julia except for the flu vaccine. I use to think that it was crazy to not give vaccines. Now, I understand why parents make those choices. I won't get into a vaccine debate, but I will say I apologize for misjudging those who made the difficult choices for their children.  Overall, this appointment was good news and we still have a road ahead. Where it will lead is Julia's destiny.

I am glad I waited a day to write this update. I had some mixed feelings about yesterday. I wanted to hear from our doctor those magic words that she is 100% recovered that I didn't have to worry as much about Julia.  However, those worries will still be there because I am a mom.  Every parent worries about their children no matter what the situation is.  I just worry a bit more because of the fragile medical conditions my children carry. I also had a brief moment of is this really happening again? I quickly reminded myself not to let myself feel angry about this. After all she is my beautiful, sassy, independent Julia.  If anything this makes me more grounded. More understanding of what is important in life. I understand that it is okay to slow down and jump in water puddles even if we ruin our shoes. I understand that if my house is not as perfect as I like that is okay.  I understand that waking up to hugs and I love you is pure joy.  I even understand those moments when both my children are yelling mommy and asking to be held that is okay.  I also understand that even if I get frustrated at insurance companies and spending my time in therapy that is okay too. I also am glad that I share our story because I hope it inspires just one person, I hope it educates even one person, and I hope that more than ever it reminds everyone that everyone has uniqueness.

I want to end my post about Julia and how she brightens up our lives.

• Her love of sunglasses, shoes, nail polish, pink, babies, and dogs.
• Her total admiration of Hayden and the way she says his name.
• The way she says daddy and just melts in his lap even for five minutes (if we are lucky :) )
• The way she makes barking dog noises when she sees our dogs or any dog.
• The fact that she wants to be such a big girl and do everything on her own.
• The way she climbs on everything which includes our baby gates.
• Her silly personality.
• Her tantrums because she doesn't get her way.
• That she is girly but will play with race cars with her brother.
• The way she decides to stand up in shopping cart seats.
• The fact that she refuses to sit in a high chair any longer at restaurants.
• I love when she calls her bike her bite.
• The way she needs her mommy even if I want a minute to myself. I still love this.
• Her determination.
• Her independence.
• Her innocence.

If you made it to the end of this post, thank you! Thank you for your interest in our amazing children.

2033 days later we are diagnosed!

I have been waiting for such a long time to say and type these words. Hayden is diagnosed. After researching, seeing nine specialist, visiting two hospitals, two MRI's of the brain, and multiple DNA analysis we finally know. It took me a few days to gather my thoughts and truly believe this is it. I am at peace with knowing. All I ever wanted to know is what caused Hayden's delays.

Tuesday Bob, Hayden and I went to see Dr. Lynch a neurologist, who specializes in ataxia, neuromuscular diseases and rare syndromes/diseases at Children's Hospital of Philadelphia.  Heading into this appointment I prepared myself not to expect miracles. To know we will probably hear thoughts, references to characteristics of xyz syndrome, and even a we may not ever know. Instead the exact opposite happened. When we arrived at CHOP Hayden was extremely excited to get to walk in a parking garage, ride in an elevator, watch all the construction and talk to new people. I truly was apprehensive about this visit I had been tainted by my initial struggle to even get an appointment, but everything changed. The moment we arrived check in was quick and even checking Hayden's weight, height, temperature, and blood pressure ran smoothly. Hayden wanted to look out the window and watch all the construction. Finally, 11:30 arrived and I thought I am sure we would wait. Boy was I wrong! 

I heard someone call Hayden's name. I assumed it was a member of Dr. Lynch's staff. A kind man walked over to meet us and said "Hi, I am David Lynch". I looked at Bob in complete amazement. We ran on time and the doctor came to greet us himself. He already knew about Hayden from speaking to his current neurologist at AI and from reviewing all of his medical information. When we arrived in the room we went over some questions, he examined Hayden, had Hayden walk and then asked Bob and I what we see Hayden doing in twenty years. Without hesitation we laughed and said definitely a politician. Dr. Lynch laughed and said is that a good thing? We had to fill him in that Hayden is everyone's friend, loves people and certainly loves being on stage. He then left the room to gather his thoughts with his colleague. Again, not anticipating an answer he came back and gave us just that! 

We knew our little man was special,  but now we can add rare as another adjective to describe Hayden. Hayden has a condition called congenital cerebellar hypoplasia. Yes, it is rare, but it is not progressive, which is what we wanted to hear. I also needed to hear it was not my fault, it is not genetic and Julia is not impacted. I am sure you are wondering what exactly is cerebellar hypoplasia. Quite simple it is a small cerebellum.  Now, we knew something was not normal about Hayden's cerebellum but now we have the name of the condition. To put it into perspective Hayden makes number 16 that this doctor has seen. There is not much out there about what to expect. There is information on the progressive form which I am thanking our blessings we do not need to worry about. I think the best thing this doctor told us was enjoy Hayden. Stop the testing and involve Hayden in as much as we can. Now, we focus on physical therapy and participating in the Special Olympics. Dr. Lynch did more than he can ever understand he assured me Hayden is going to be a productive citizen and maintain a job. All I ever wanted is to know Hayden has nothing scary and that he will be independent.

My heart and mind are relieved. I can stop spending days and nights wondering what I did wrong or will we ever know. I can look at this wonderful little boy and feel confident Hayden is going to be okay. Right now I am going to take advantage of my sweet boy who loves therapy and figure out how insurance is going to allow more for him. I also now can focus on getting the right team behind him that shares our views for Hayden. I can celebrate the little joys and cherish the moments he is still my baby boy. I am so proud of Hayden and cannot wait to see all he accomplishes. 

Happy 2nd birthday Julia

Dear Julia

My little love bug I cannot believe another year has flown by. Wow, you are already two. Your second year started off pretty scary. We were so fearful of how your little body was going to recover from such a scary infection. However, you have proved us wrong and you showed me how to believe miracles happen. Every day you fight. You fight to get stronger and fight for your sassy little independence. I love how strong willed you can be. 

Amazing what a year could show us. You love life and love our little family. I am often surprised at all the little things you love. You love pink. Everything must be pink from your toe nails, clothes, and shoes. If it sparkles you love it! Purses, shoes and sunglasses are pure joy. I love the way you balance being extremely girly but enjoy playing cars with Hayden. I love the way your smile lights up the room. The way you say daddy melts my heart. I love the little barking sounds you make when you see your doggies Cody and Sophia. Our snuggles I do not ever want to let go. 

Baby girl you are so independent and so brave. You are definitely no one other than Julia. I hope you always stay independent and love able. I hope you continue to see the beauty in the simple things in life. I hope you stay sassy and decorate the world in pink. I hope you still love to paint and play with your brother every day. 

I hope you know how much I love you. How much I wish I could take away how tough this year has been. I want you to always remember how proud I am of you. I cannot wait to share many more toe nail, shoe shopping, pink and glittery days with you. Words cannot express how much I love you. You are my sunshine. 

I love you!!

Happy 2nd birthday my sweet Julia! I love you!!

Mommy

Saying goodbye to preschool and hello to new bright beginnings....

     We have a big independent kindergartner!  I cannot even believe those words as I type them.  Hayden's last day of preschool was emotional for me.  I was sad we were leaving his wonderful teacher and para.  I struggled that my baby is no longer a baby. He truly is a boy growing up to quick.  There has been so many ups and downs the last 2.5 years. We have had some trying times with a suggestion of a wheelchair or his walker not working for the classroom. However, those trying times are far outweighed by wonderful moments.  Hayden is talking well, he is able to identify colors given choices, he can write a letter H, draw a person, draw a house, has a vivid imagination, and most importantly he can walk in his walker keeping up with peers.  When I first took Hayden to preschool he was just getting the hang of his crocodile walker. Since that moment he has graduated to a lighter weight walker a Nimbo.  This walker allowed Hayden the freedom he desired so much. He runs, he plays, and best of all he is proud. He is proud to walk in the stores and nothing is stopping him now. This post about preschool would not be complete without me talking about Hayden's teacher and para. We love them dearly. I really struggled with the fact we would not see them every day. That someone new has to learn about Hayden.  I do not know how anyone would love him the way his current teachers do.  I still worry.  I still want to know his favorite people in the whole world outside of his family will see him everyday. I felt safe knowing they got Hayden. Most of all I found people who believe in him and who were not scared of his disability.  They saw Hayden as a typical five year old boy. He was not treated different and I cannot thank them enough for being so wonderful to our son.  I know we will forever hold them in our hearts and we will keep in touch. They were so critical to Hayden's success the last few years.
     Hayden just finished another year of baseball. He had such a great time playing on the Phillies. He definitely looked forward to every game. As you may have guessed Hayden was quite the ladies man. Whenever we had female buddies you can bet Hayden had a few playing with him.  I am not sure if I should be worried that my five year old has a way with the ladies already. Unfortunately, he was not able to finish his last two games since he sprained his hand, but he definitely is looking forward to next baseball season.
     A few posts back I wrote about some more genetic testing for Hayden.  For those following Hayden's story we really do not know what is causing most of his delays.  We do know he has a underdeveloped cerebellum, suffers from hypotonia and ataxia, and has some vision difficulties.  We have been through two MRI's, two genetics doctors, vestibular testing, micro arrays, muscular dystrophy testing, PMD testing, other scary disease testing I fondly call (the M word), and most recently we completed a hereditary ataxia panel.  After several weeks of waiting, which is the worst part we finally heard from our neurologist.  All the testing came back normal.  Normal is great news but normal is also frustrating news. I am relieved he has nothing life threatening, but I wish I had a reason for his delays. For his future I feel it is important to still search for an answer.  I had a conversation with his neurologist and we decided it was time to consult another neurologist. This time we are headed to Children's Hospital of Philadelphia.  This will be the forth neurologist Hayden has seen and I am hoping he might have some new ideas or he might finally just reconfirm that what we are dealing with is an unusual form of cerebral palsy.  Stay tuned to our neurology updates.
    I want to end this post on some hopeful news.  Hayden had an orthopedic doctor follow up on Monday at AI Dupont.  We love Dr. Mackenzie! He truly embodies everything a children's physician should be. He is kind, he is optimistic, and he treats you as if you are his only patient.  He examined Hayden and we were shocked to learn Hayden grew 4 inches since December! I knew he got bigger but four inches wow!  He was so impressed with our little guy. He could not believe how strong he has gotten and how fast he has gotten.  Hayden loves to walk around the muscle clinic hallways to pass time. He also loves to stop and socialize with everyone. I mean everyone nurses, doctors, students, patients, cleaning staff, and the list goes on.  The muscle team knows Hayden by name. Not sure if it is because he is very outgoing or because he is a mystery.  Anyway, we met with Dr. Mackenzie who spoke of all the things Hayden has accomplished in a few short months. It's hard to realize how far he has come when I see him every day.  I was thankful he pointed out these little inch stones to me. Dr. Mackenzie looked at me and said this little guy is going to walk independent. I looked at him and said really without a walker?  I have always been hopeful but I am cautiously optimistic. He has improved so much and I dream that there is a day things are easier for him. But hearing those words from Dr. Mackenzie made me smile and made me hopeful. He said there is not a time limit on when someone has to graduate from using a walker. It is going to be when Hayden does it and when he can control his balance.  Little did he know how much hope he gave me. Even for a five minute conversation I had hope. I wanted to hug Dr. Mackenzie but I thought it was best I did not shock him with a hug from an emotional mama. I still am beaming about our visit to AI yesterday. From the time Hayden stepped out of the car in his walker. He walked with me I did not need to direct him or slow down.  We made it from the entrance and upstairs in 10 minutes. He even stopped to see a therapy dog at the hospital. She was a chocolate lab and we all know our family is obsessed with labs.  We arrived at the muscle clinic in time for him to play angry birds which made his day.  After his appointment we had to head to Lawall's to have his brace fitted.  Hayden walked again.  Once we got to Lawall's Hayden tells the receptionist " I am here where is Mr. Gary?" she said he is with someone now. Hayden tells her that is fine I will walk around some more.  My boy who struggled 2.5 years ago to keep up wants to walk around some more!

  Until next time....  Thank you for continuing  to follow our story!  Thank you for letting me share our accomplishments and joys.

xoxo

    

IEP's, accommodations, oh my!

Ten days has fast approached me today. Ten days ago I left an IEP meeting for Hayden feeling sad, defeated and so worried about our big transition to kindergarten. I worried would Hayden's new teachers, para's and peers love him the same? Is the new beautiful school a perfect beautiful school for Hayden. I was saddened that we had to leave behind Hayden's teacher's and para's who we adore. Who Hayden adores. I left that last meeting digesting the fact we had to talk about a wheel chair and all that meant to our family. What that meant to Hayden. I reached out to friends and even had a very wonderful mama who walks this journey check in on me. My world during that first IEP transition meeting felt defeated. I was shocked to hear those words and still need time to digest those words. Please do not think I oppose wheelchairs. I have met many wonderful adults and children who live a rich and fulfilling life using a wheelchair for assistance. 

What I do not think the therapist or others truly understand is our journey. Hayden has traveled on a journey for five years. We have celebrated and cried on this journey. I also cried and had to accept Hayden needed a walker. It takes time and a ton of emotional acceptance to digest adaptive equipment. I felt at that first meeting all the work and all the dreams we had for Hayden needed to change again. I am not ready to change my dreams just yet. I have big dreams for my son. I hope to continue to use less support and reach more independence. You know what he is proving he wants that too. Hayden wants to walk in stores, he wants to run with his friends, he wants to do things for himself. This is why I am making a choice for him. I am saying no to starting the school year in a wheelchair. I am asking for a try and for everyone to believe he deserves to try. 

School means well, the therapist means well, and people close to Hayden mean well. However, I believe my little boy deserves his chance in his light weight walker he fought to finally be able to use. Today, I feel happy and proud of what I accomplished for Hayden. I am giving him the opportunity he deserves but I am also being open minded this may be our future. For the past five years our future has changed and I know will continue to evolve. I am excited to see what next year brings. I am excited to work with our new teacher and administrators to help Hayden be the best he can be. 

Transition an evil little word

I know every parent wishes their children would remain young. I never understood that before I had children. They truly become your whole world and existence. You would do anything to make the world perfect for your child. I prepared for this transition from preschool. Am I ready no? Do I wish I could keep Hayden with his teacher, therapist, and para that love him? YES!! Reality is transition is happening. In four short months Hayden will be in kindergarten. My first born, my sweet baby boy, my son who has a disability will become a big kid. This mom has many emotions. I know I will be okay and more importantly Hayden will be okay. It does not mean this road we are traveling on for five years has been easy. At times it has been hard, but rewarding in the same breath.

Today was no different than any other day. I woke up knowing I prepared well for this transition meeting. Observations at his new school were completed a few months ago. My letter was prepared addressing what would assist Hayden in being successful. I was pleased to see the therapist and teachers agreed with many of my requests. What I was not prepared for was the conversation of a wheelchair. As a mom of a child with mobility difficulties you wish you could give him your legs and balance. You wish you could make things easier but I cannot. What I can do is be the best mom and advocate for my child.

Just like the day I heard Hayden has delays at nine months or the day the words posterior walker entered my vocabulary I sat. Tears filled my eyes. I have not had time to digest those words. I have not had time to process is this our new reality? Instead those words were uttered to me from an educator who has been through a multitude of IEPs. Someone who has been educated about accommodations, IEPs, 504 plans, and district policy. Her statement was not meant to be hurtful. However, it did just that it hurt. It hurt all over again about bumps we have in our journey.

I like to think I am a good mom, a proactive mom and advocate. I have spent many restless nights researching. I have been through disability training. I met amazing people in my disability training who get it and who understand the road I travel. Why is this topic not easier for me? Why did this hurt? Why am I sad? Why am I angry that our education system still needs an overhaul? Why can't I shake this sick feeling in my stomach. I want to yell it is not fair. I want to say I have been tested now please no more tests. I want to wake up and know Hayden understands I love him. I want him to know I will never give up hope. I want him to know I am doing my very best.

Now as I digest my day I am going to take some time to be objective. I am going to take some time to remind myself we have many accomplishments. I am going to take time to cry. I am going to kiss and hug my baby boy and tell him I am proud of him. I am going to tell him he can be a policeman when he grows up. He can play baseball and he can run. He can chose to participate in crossfit or become a swim super star. Most of all I believe in my little man and I believe I will make the right choice. This choice seems hard now and a shock. Tonight I feel frustrated but I know tomorrow will bring me joy. Tomorrow I wake up to my life a life I would never trade. I have a husband that loves me, friends who support me, family who know matter what will be there and two beautiful fighters. Hayden mommy loves you to the moon and back!

Hello 2013

2013 has gone by so fast I cannot believe it is almost April and this is my first update on our life. So far this year has been a year of inspiration, hope, strength, determination, and change.  Personally those words describe me just as much as my amazing love bugs Hayden and Julia. I started on my new fitness adventure and joined Crossfit in January of 2013.  I started at the Y last year and got serious about my health around November 2012, when life was returning to normal a bit. I progressed my way through various exercise classes Zumba, Spin, Body Combat, Body Pump, and Yoga.  The Y is a bit of a drive for me, so I decided to research gyms locally fast forward I found Crossfit.  I went through a trial and  thought to myself what am I thinking? I left there certain this is not for me. However, I decided to give it another shot and completed my private on ramp sessions and one on one training. I still have days I think why am I doing this but remind myself I have learned to love what it has done for me. The work outs are challenging and they push me to limits I did not imagine I could ever do.  It has helped me become a better me, better mom and better wife. I am officially hooked and truly excited where this new fitness/healthy lifestyle will take me in 2013.  If you think that was my only adventure for 2013 sit tight.  I was fortunate enough to have dinner with some friends I have not seen in years. Truly it has been years! So great to reconnect for dinner, drinks, good conversation, and bucket list commitments.  Bucket list check off-  running my first 1/2 marathon in Disney.  Hello February 2014, I cannot wait to commit and register with my friends Shannon & Aleks if everything goes as planned. Enough about me I know you come to my blog to read about my love bugs.

Hayden has started out 2013 accomplishing many goals. Our biggest is moving to a lighter weight walker. It is smaller, it folds, and allows greater independence at school, home, and in the community. He amazed me only taking roughly two weeks to adapt to his new walker. Now he likes to use it as a weapon to run over things and people :)  He really is all boy! We also registered for Kindergarten. I am not ready for this. I love his teachers and really enjoy my time with my little man.  However, I know he will do great.  It certainly will be a huge adjustment for all of us. I know the school, the kids, and staff will fall in love with him. He is also getting ready for his second season of baseball, which he is overly excited about.  I cannot wait to cheer him on this season! Hayden and I will be running our first 5k together in June with our friends Shawn and Natalie.  I know he will be so excited to compete in his first race with mommy.  We are there to say we did it and to enjoy family time at the beach after our run.  Hayden has also become fond of working out. He likes watching his daddy run and lift weights.  His favorite thing currently is Crossfit. He has red Reebok's that he insist are his Crossfit shoes and he often wants to Crossfit with mommy.  Who knows maybe he will be the first person who has a disability to complete in the Crossfit open. Perhaps he will lead the way in an exercise program for the disabled. We will keep dreaming big because Hayden sure does have big ideas.

Julia has certainly proven herself over the last several months.  She is still recovering from the encephalitis (brain infection) , but she is rocking her recovery. Julia has gained back all of her milestones she lost when she got sick last August.  She is currently working hard on some new skills and challenging her therapist daily.  Julia loves to climb, sing and is trying so hard to walk.  She definitely is everywhere and we do not have any breaks with our little diva.  If there is something to get in Julia will find it.  I am so proud of her and her determination. I am holding on to hope she will make a full recovery. Time has been on our side so far. Julia's personality has really taken off this year. She loves babies, purses, shoes and getting her toe nails painted. All at the young age of 20 months.  Julia is certainly our diva princess who adores her big brother Hayden.

I will try not to let months pass before my next update. Thanks for sharing in my little love bugs accomplishments.

Happy 5th birthday Hayden

Where has all the time gone? Can my sweet boy already be a big five year old. My heart is not ready. Five is so big and five means so many changes. It means going to big boy school, it means mommy trusting you in someone else's hands again all day, it means you are growing up. Just like the year before I have written a letter to my son. I hope one day he will look back on this and know that I loved him and that he is the center of my world.

On December 31, 2007 at 5:33 in the morning I became a mama for the very first time. I felt joyous, fearful, excitement and love that I have never experienced. The kind of love only a mother will ever know. After a roller coaster delivery you were placed in my arms and I knew from that moment my life was forever changed. We spent a week in the hospital so mommy could recover. You and daddy were there taking care of me every single day. All I could think about is coming home and spending my entire life loving you. I dreamt of all the things you would accomplish. I could not wait to just snuggle with you, whisper that I love you, and tell you that you are everything I ever dreamed of my sweet Hayden.

Little did I know that we would face some obstacles in our first five years together. I know we do not focus on your disability much and I wonder if we have made the right decision. But when I look at you I realize I was given a wonderful gift and made the right decision. That gift is a boy that lights up my world. You are funny, you make mommy and daddy laugh every day, and Julia idolizes her big brother. You are kind and so creative. I love that you want to build things like daddy and love baking with me. You open the world to possibilities and acceptance. You are what every little boy should be happy and full of life.

In five years you have given me more than you ever know. You have changed my life. You not only made me a mama for the first time, but you showed me my heart is bigger than I imagined. You helped me see beauty in differences. You helped me become a better person, to want to help and make a difference. You gave me a reason to fight for change. You have shown me that there is no greater cause than to be kind and accepting.

So, my sweet baby boy Happy fifth birthday. I need you to know mommy loves you to the moon and back. I want you to know I am very proud of you. You are amazing and will accomplish amazing things. You make a difference every day and are so strong. You are one of the bravest boys I know. Happy happy birthday Hayden!! I love you!!!

Happy International Day of Persons with Disabilities!!

December 3rd marks a very important day in our house and really for the disability community. Today we celebrate International day of persons with disabilities.  Each year there is a focus for the year and this year happens to be "removing barriers to create an inclusive accessible society".  I will be honest, before becoming a mother to a wonderful boy who has a disability, I did not think enough about the word accessibility. Now, my world is centered around that word and what it means for Hayden. I also think about all the other children like Hayden and the adults living in our society. A friend of mine from Partner's in  Policy making opened my eyes on what it means for adults with disabilities. She spoke of things like getting help at the gas pump or finding vacation spots that are accessible. Little things that I take for granted every day are not always easy to the disability community.

Much of my blog has centered around updates on my little love bugs Julia and Hayden. While I will continue to update everyone on their awesome inch stones I also would like to focus on what accessibility has meant for Hayden. Hayden is in his last year of pre school. This is bitter sweet for me. I love his teacher Amanda, all of his para's and therapists.  Hayden has achieved so much in his two years of school. He is talking so well, playing cooperatively with his peers, and is even walking with the class now.  Huge huge deal.  Hayden uses a posterior walker for mobility, it is large and not easy to maneuver in a small classroom full of kids.  I struggled for awhile hoping that Hayden was using this in his classroom 100% of the time and this year he has done just that.  We were fortunate enough to gain an extra teacher and his classroom was able to be adapted to Hayden. How awesome is that? Hayden is now able to move freely in his classroom in his walker if he chooses. I love that my little boy does not have a restriction to use the one thing that lets him walk freely without barriers.  We are also frequent flyers at AI Dupont Hospital for Children. My little man has rocked walking recently to his evaluations and doctors appointments. Another big deal!  This is a hospital that truly understands the word accessibility. The hospital hallways are large enough for Hayden to maneuver his walker and the examination rooms are equally as large. The best part about the hospital is the accessible playground. I wish every playground was accessible for Hayden. He can crawl on the equipment and play just like every other child. It simply is amazing!  Finally, I have to rave about the sports program for kids of all abilities in the town we live it.  Hayden has participated in baseball and soccer. He loves them both! However, he definitely has an arm on him and eagerly waiting for baseball season.  Who am I kidding he is eagerly waiting for all the high school girls that come to help him play. If anything Hayden knows how to make the ladies fall in love with him.  He will make an excellent boyfriend or husband one day, when he is 30! Now, we just need to tackle educating people who see Hayden in the walker not to feel sorry for him. He truly is a happy little boy. Once you look past his walker you will see just how amazing my little man is.

Finally, I will close this post with a huge thank you. Thank you for continuing to read my blog. Thank you for your continued interested in my children.  They truly are a blessing and hope that they will help just one person or family understand that different is not a bad thing. Different is beautiful, different is amazing, and different is okay!

Who needs a big cerebellum any way!

If there was an award for most valuable patient our family would certainly win. Three visits to AI in one week and one more to go. To say we are frequent flyers is an understatement. However, I would not give up our doctors or this hospital.

This week was a busy week neurology visits and genetics. My brain is in medical overload , but I can honestly say this okay. Tonight I left the hospital with a reason for Hayden's balance instability and coordination. Almost five years and a multitude of test to hear the words uttered to me. Your sons cerebellum did not develop correctly. His cerebellum is small and that will not change. I mean who needs a big cerebellum any way? What I am thankful for is this is not progressive. I am thankful Hayden is going to be just fine. Hayden will always be your best friend and he will make you laugh when you have sad days. Not sure the world is ready for this little man :)

We have also been blessed with our sweet Julia. The nasty HHV6 virus that caused roseola could have impacted Julia significantly. It has not and will not, which is a huge relief. It may take a year for her to fully recover but time has always been on our side. Julia is making great progress and continues to work hard at trying to walk while getting into trouble. She is fond of standing on chairs and climbing on things she should not.

Tonight I will keep it short and sweet. I am sure I will have more news in the coming weeks.

Pure joy!

Wow, I can hardly believe it is November already! November and December are my favorite time of the year. I absolutely love the holidays and everything it represents. I know you are reading this for updates about my pride and joys and I promise I will be doing just that.

First, I will start with updates on my littlest love Julia. We are celebrating two months out of the hospital and being healthy. Huge huge win for our family. Julia has been making great progress in her recovery of post viral cerebellar ataxia. She recently started walking with a push toy for a total of five feet. Hooray! Julia is also clapping and banging toys at midline another hooray! She has become quite the daredevil sneaking up the stairs when we aren't looking, standing on chairs, surfing on her toddler rocker, and standing up everywhere. We also got her microarray results back, normal! Julia is still being followed closely by neurology and will see genetics soon. We just got back today from seeing Dr. Scavina and she is pleased with her progress but is still contemplating steroid therapy. I declined right now because we are heading into flu season and it worries me putting her immune system at risk. Right now we are in a good place with therapy and will add pool therapy soon. I know she is going to adore the pool.

Now onto my main man Hayden. I cannot believe he will be a big five year old next month. He is doing really well in school and loves his friends and teachers. Hayden recently went to the eye doctor and was able to read the entire picture chart. He didn't just read it he used descriptive words and size references. Hooray for preschool and all he has learned! Soon we will venture to his neurology follow up and orthopedics. This includes a new orthopedist who specialized in cerebral palsy. I am eager to meet Dr. Miller. I cannot wait to have someone assist me with helping Hayden become the best he can be. Hayden is also celebrating another important milestone we are finishing soccer! He is going to be so excited to get his soccer trophy on Saturday. Hooray for sports that include all abilities.

I have been seeing a ton of post on Facebook on starting to write down what they are thankful for each day. I think this is a wonderful idea. I am going to close my post today with my first thought for the month.

1. Today I am thankful for a simply perfect Halloween. Hayden and Julia loved every minute.

Today's post brought to you by: Inchstones

My emotions have been up and down lately. There are days I am encouraged by the improvement Julia is making and the strength Hayden is gaining, but then there are days that I struggle to see the positive. Julia has been seeing Hayden's old therapist from Easter Seals. I am so lucky to have them back in my life, not that they were really out of it, but the weekly support helps. It helps that they know my family, they know me, and they understand that I have these moments of weakness.  They help me see the beauty in little inch stones and embrace those joys. 

I have not been sleeping well over the last few days. I cannot seem to turn my mind off of the pending microarray testing that was completed on Julia on September 27th.  The thing about these tests is that I endure weeks of waiting. This test in particular takes three-five weeks to run the DNA analysis looking for deletions or duplication's. I do not know why I cannot turn off my mind. I do not anticipate anything coming back  for Julia since Hayden did not have anything show up on his analysis a few years ago. Still I worry and I wait. However, even if something does show up I know that does not change who Julia is and what she will accomplish. I think what I struggle with is the irony in this all. The fact that I had a beautiful normal developing little girl get a normal childhood illness. The fact that it took away some of my worry she was developing normally and allowed me to experience a typical childhood progression. The fact that it was taken away from me in an instant. I try not to be angry or allow for self pity of why me, but sometimes I just give into that nagging little part of my brain. That nagging little part that is saying it is just not fair. 

Despite my ups and down this week we had something amazing happen today. It was a day that I needed something amazing to happen. Julia walked pushing a toy. While this may not sound huge it is so big! She did this on her own for five feet, without falling, without help. My heart was full, my eyes filled with tears as my baby girl was taking assisted steps. I also witnessed my son Hayden cheer his baby sister on because he knew that was a huge deal today. I found him an hour later helping his baby sister, showing her exactly how to pull to stand. He kept telling Julia to put her feet closer together. He corrected her kneeling telling her to tall knee. This kid is amazing! He sees joy where I miss it some times. He truly is a wonderful big brother and the best big brother for Julia. I have written before how Julia has helped Hayden well today Hayden has helped Julia. He helped her get into positions correctly and he celebrated our big deal of walking with a toy. 

Wow, how my days can go from worry to joy. I love the days with joy and I know the days with worry will become less. I know once I have digested our new normal it will get easier. But most of all I know my children will have many more amazing days ahead. 

Life plain and simple

I had every intention today to write a post centered around disability awareness, especially since October is disability awareness month. I wanted to focus on what having a child with a "different" ability brings to our family. Then came the realization my sweet baby girl turned 15 months old today. Also, I did what I promised myself I would not do, but I did it anyway. I logged onto Facebook and saw pictures of family and friends children that are close in age to Julia. It hit me like a ton of bricks my baby girl is not walking independent yet. Wow, another child not hitting a major milestone. Now, the rational side to me says it is okay she is not doing it yet. She is not considered delayed until 18 months. She has got this! The irrational side wanted to sulk in self pity. Why my children? Why?  I know I may not ever understand the why, but it hit me again hard today. I do need to remember the neurologist warned me she might be late walker given the recent set back we experienced with the post viral ataxia. However, it did not soften the blow any less. I felt despite my best effort to focus on the positive it was important to share the reality of what it is like to parent a child with special needs and a child with well I guess "temporary" special needs.

I quickly sent a text to my friend Shawn who gets me and gets it. Whatever the it is. She reminded me again that we can have these days and that my children are going to do amazing things. You know what she is right and she allowed me to vent just for a minute and to realize writing this down is also important. That parenting in general is not all roses and that parenting special situations is definitely not all roses. However, my feelings they are absolutely okay and normal. I try to remain the forever optimist, but sometimes I get knocked down. I bring myself back up despite the blows. For these days that I feel defeated I have found a love of exercise. I have discovered something more than inner strength and that is physical strength. I still have a work in progress however, it is progress. You know what sometimes you have to climb a thousand hills to reach the mountain, but you eventually get there. Thank you Bob for letting me have this time to become stronger physically, for supporting the emotional moments, and my empowering moments.

I want to try to close this post with my original thought I want to focus on the meaning of disability for our family. I also want to emphasize this is not about what my children cannot do, it is about what my children absolutely 100% positively can accomplish. To sum up what they mean in a few words would be hope and inspiration. Those words took on a whole new meaning for me parenting one child with cerebral palsy. Now, with a second child recovering from an illness brings on a whole new meaning. I do not think I could ever imagine just how powerful two words could be. Hayden has shown me that outside of love, hope, inspiration and dedication is all you need. We recently participated in the Easter Seals Annual Dinner. I was so honored to be asked to introduce the key note speaker Congressman Castle this year. It truly was another amazing year. We were there with 200+ guest and those guest sure know my rock star Hayden. Hayden has quite the following and social calendar for a four year old. If Hayden is not your friend already you better believe by the end of the night he will be. Hayden was very eager to show Lt. Governor Matt Denn his volleyball picture, not once, not twice, but at least five times. He wanted to be certain he would be back for volleyball in 2013 ,that he knew he would be there and he was going to watch his daddy play volleyball. He is also quite fond of the stage and wanted to join Congressman Castle in giving his speech. We think he is starting early on his campaign for elective office. Not really sure if he is a democrat or republican just yet. Guess, time will tell. The night ended with heartfelt hugs and good byes. I know he is eager to attend the next event, not sure if it is for the food, the social hour, or being on stage. Probably a combination of all three.

As you can see from the evening at Hotel DuPont  Hayden has brought so much to our lives. Something more than love. Something that is more than being proud of your child. He has brought a purpose. He also prepared me to face a challenge that I did not think I could face, not once but now twice. He reminds me sharing our story opens up so many people's eyes, even just for a moment. He reminds me that having a disability really is not negative, it is a true blessing. He makes people stop and wonder, he helps children understand that different is okay, he enriches lives. He reminds me that I need to think about words differently and how they can offend someone. He reminds me to accept everyone for who they are no matter what. He has taught me to be a better person and I cannot thank him enough for letting me be his mommy.

So, after reading this post I hope just for a moment you see the beauty in all abilities. I hope you understand that I struggle just like everyone else but also have amazing moments. I hope you hold the door open for someone in a wheelchair or give up your close parking spot for the elderly. I hope more than anything you embrace differences, because different is okay.

Much love

Renee

xoxo

We went to Disney World!!

Our family took a vacation to Disney World! I cannot describe just how magical this adventure has been for our family. We have had a few bumps in the road this summer and Disney was just what our family needed. I originally booked this vacation back in February of this year. I wanted our first visit to be at a time of year that was not so busy because I was not sure how the kids would do in large crowds. September was a great time to go despite the rain we experienced every day. Hayden has been counting down for months and Monday the 17th arrived and he knew it was time to go to Mickey's house. We flew out of BWI instead of Philadelphia so we could fly during Julia's nap schedule and catch a direct flight. On our way to Baltimore Hayden kept saying are we there yet mommy. Thank goodness we did not drive 18 hours. I was so worried about how we were going to manage 4 pieces of luggage, carryons, strollers, two kids and my husband and I. We survived! I dropped my hubby and the kids at the departure for southwest and off to long term parking I went.

Once I arrived back with my family we curbside checked our luggage and off to security we went. As many of you are aware Hayden is not able to walk independent and he was in his stroller and so was Julia. I don't think the security agents at BWI understood and they made us take him out of the stroller and walk him through the security check point. Luckily Hayden is only 32 pounds and he is not terribly heavy to lift. I do wonder how we will tackle this obstacle when he is bigger?  Once through security we grabbed a bite to eat and had to quickly board our flight. I have to say I love Southwest! I was nervous with the no assigned seats but we were able to pre board which made things so easy. I loved that we could have the kids in the strollers until we reached the airplane door. Hayden was so excited to fly on the airplane but I must admit I was nervous about how the kids would do.  Well, my nerves were not needed they were amazing. Julia fell asleep an hour into the flight. She was too busy wanting to see all the passengers to fall asleep right away. I followed the doctors orders and had both kids drinking on take off. However, I felt terrible Julia was sound asleep when we were landing she woke up screaming. I think her poor ears popped. Lesson learned even if your child is asleep wake them up to avoid the ear pressure.

It was a two hour flight from Baltimore to sunny Orlando, Florida. We decided to use the Disney magical express and Disney transportation. I will talk about the pro's and con's of using this service when you have children with special needs. I loved that I did not have to retrieve our own luggage and it was delivered right to our hotel. I loved that we took a big motor coach to the resort. This was worth the free service. We stayed at the French quarters which I enjoyed. The rooms were a great size since we requested a handicapped accessible room and the resort was quiet.  Everyone was extremely pleasant at our hotel. Since we did not rent a car we had to use Disney transportation. This included water taxi's, monorails, and buses. My least favorite of the transportation were the buses. The kids could not stay in their strollers so we stood in a long line waiting for the arrival of the appropriate bus.  Once the bus arrived the kids had to come out of the strollers. So, we had to carry both kids plus strollers on the bus. The buses were often packed and only had standing room at times. This was the con of the trip. The buses were very difficult to manage with two non walking children. Maybe if Julia had been walking it would have been easier but with two non walkers this was hard. I absolutely loved the boats and monorail system. The kids could stay in their strollers and it made it easier to load them in and out. I think our next trip to Disney we will do one of two things: rent a car or stay at a resort that is closer to magic kingdom to use the monorail only.

I had planned to go to each resort: Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom. Unfortunately, we got rained out of Animal Kingdom. I was so disappointed I think the kids would have loved seeing the animals. By far the best place to go was Magic Kingdom for the ages of our kids 4 and 1. Followed by Epcot and then Hollywood Studios. I think in all honesty when I return to Disney next year or the year after we will skip Hollywood Studios and spend two days in Magic Kingdom. The best thing about Hollywood Studios for us was Hayden getting to see Lightning Mcqueen, Mater, Buzz and Woody. I was pleasantly surprised he enjoyed Epcot. We only were able to see half the countries but he enjoyed it.  Note to self do not take your children to Norway! It was scary. We ended up eating in Germany at the Beirgarten. That was a huge hit because of the live entertainment and the food was great.  We also stayed for the Illumination show.  The kids lasted through half the show before they got scared. I think if we watched it again we would watch it from the entrance and not up close so it is not so loud. Magic Kingdom we spent most of our time in Fantasy-land  That is where the most age appropriate rides were and we just did not have time to visit the other sections of Magic Kingdom. We started off our day in Magic Kingdom eating breakfast at Crystal Palace. We loved it! Hayden loved all the characters and the food was fantastic. If you go here for breakfast make sure you try the french toast! It is amazing!! After breakfast we ventured over to ride some rides. Hayden was so excited and I was impressed how well he did. We went on dumbo, Peter Pan, Winnie the Poo, train, Its a small world, the carousel, and Hayden and his daddy drove race cars. I don't think we will venture to Peter Pan again it was dark and scary for the children. I was actually surprised how dark some of the rides were.  I brought glow sticks with us but did not think I needed them on rides. I will remember that for our next trip.

We ended up eating at several character meals. I decide all for breakfast since my family loves breakfast. We ate at Chef Mickey, Crystal Palace and Ohana. I loved each of them in the order I listed them. I think we will try Ohana for dinner next time because I heard dinner is amazing.  Chef Mickey was Hayden's absolute favorite place to eat. Also, a big tip if you want to save time trying to have pictures with the characters this is where to do it. The characters come to your table and you can get pictures with everyone.

I can't emphasize enough how magical this trip was for our family. Just seeing the smile on Hayden's face melted my heart. I honestly do not think he had a better time in his life yet. I also know I want to take my family back there again before Julia turns three just to save on ticket prices again. Disney is so big and there is so much to see that I knew we would not fit it in this trip. I am just happy we were able to get away and forget about our special needs and just have fun. Sometimes that is exactly what your family needs to take a break from doctors, therapies, and school and just enjoy life. I hope to do this more often with our family because sometimes the day to day can become overwhelming.  I failed to mention that even though we were getting away from our day to day with special needs it was apparent many others were doing the same thing. We met so many amazing families in Disney World. I loved that no one looked at my child like something was wrong. I loved that I could talk to another family who got it. It made me feel for a brief moment that our family is not the only family going through struggles. I even found a cute adaptive stroller for Hayden as he gets bigger. One that doesn't look to medical. That was my biggest concern trying to have a somewhat normal adaptive stroller versus a "Hey look at me" stroller. I also am amazed at how nice everyone was during our trip to Disney. Sometimes it makes me feel like I need to move South. Strangers helped us with our strollers, strangers helped me with our kids, and offered their seats on the buses. It was simply nice to have kindness experienced by people you have never met. It reminds me every day that there is kindness out there that is forgotten with the day to day hustle and bustle. I love the south and the hospitality it offered our family! I will end this post with some pictures of our adventure.

Three weeks post discharge update

Amazing how quickly time goes by, here we are three weeks post discharge from AI Dupont Hospital for Julia.  We have spent these last three weeks attending physical therapy, occupational therapy, doctor appointments, and having an EEG completed for Julia. Just like her brother she has done amazing. She really did not love the EEG at first,  but I can understand not wanting electrodes and flashing lights on you. Our neurologist called to tell us good news that Julia's EEG is normal, she does not show signs of seizure activity. We are very thankful for these results and we now know we can travel safely on our family vacation to Disney!  If there is anything this family needs is a vacation from the day to day of our normal lives to have fun. I truly think Julia and Hayden will have the best time and I cannot wait to have a week without therapy and doctors appointments.

I know I have written a lot about how difficult it is to balance the various needs of my two children. However, this week at one of our visits to AI on Monday reminded me just when I think we have a difficult road it could always be worse. When Julia, Hayden and I were leaving the hospital Monday we were waiting for valet to return my car. I noticed a couple smiling at my children. I had my huge double stroller, which by the way I will be purchasing my new amazing stroller in the new year. Any way they saw Hayden first and of course Hayden decides to say hello. Hayden loves to talk to everyone and show them his toys he brought for his adventure. The couple asked if there was another child in the stroller I turned and showed them the full stroller so they could see Julia. Again, they smiled  at my two babies.  I realized with the hospital badges they had they were staying at the hospital with their child. I found out from my few minutes of conversation that they had a five month old little boy who had just went in for major surgery. The surgery was going to take a minimum of three hours and that their stay was going to be awhile. I also know they traveled from New Jersey to our hospital in Delaware. I know my story was different, but I wanted to reassure this couple they were in good hands and that the doctors and nurses at this hospital are amazing. I told them about our recent adventure with Julia and about my oldest love Hayden. I wanted to share with them that I understood their sadness and worry despite our roads being very different. It was then I realized ,as my car arrived and I was putting Julia in her car seat that the shuttle arrived for the couple. They walked by and told me thank you and just smiled at my children. I wished them luck and let them know I would be thinking about their son. I know I have had a rough patch from time to time but my children made this couple smile. My children who are undergoing therapy, tests and doctors visits brought joy to a family we just met.  I think of that couple every day and wonder how their son is doing. I hope to see them in our future visits and I hope they have found comfort in just how wonderful this hospital in Delaware is.

I continue to be amazed by Julia and Hayden's strength. I am so proud of how hard they work and their ability to persevere. So, today my post is centered around thanks.

Today I am thankful for:

1. Julia regaining all of her skills
2. Julia learning how to get in and out of a seat unassisted
3. Julia saying mama with a smile
4. Julia having a clean bill of health from a major medical complication
5. Hayden bringing joy into strangers lives
6. Hayden choosing to be independent every day little by little
7. Hayden for playing soccer
8. For both of my children strengths and happiness
9. For my husband's support and love
10. For all the new, old, and future people to enter my life
11. For the continued support and love from family and friends
12. For being able to kiss and hold my children

Thank you for reading and I hope to bring more exciting news from my children.

xoxo

Updates Updates Updates

Wow, what a week it has been after a nice long weekend. My life is chaotic to say the least with no end in site for a few weeks. I had a wonderful weekend respite day for myself. I was able to enjoy a day of zip lining and venturing around Washington, DC. Thanks to my hubby for watching the kiddos while I enjoyed a wonderful stress free day of fun. Now, back to reality! The work week started on Tuesday it is nice to be back into a somewhat normal life. Then Wednesday approached and I knew this marked the start of the busy week I have ahead.

Wednesday, was a big day for us it was Julia's first neurology appointment with Dr. Scavina who happens to be big brother Hayden's doctor. Wednesday also marked the day we were going to get Hayden's vestibular testing results.  Well, we ventured to our neurology appointment at AI, little did I know there was going to be a radio-a-thon at the hospital to raise much needed money for the children's hospital. To say it was a madhouse was an understatement, thank goodness for free valet parking! I am beginning to think it is bad that the hospital staff is starting to recognize me. I guess that is what happens when you have been seeing people for four years, they become an extended part of your family. They were surprised to see me there with little Julia. They remember when I was pregnant and how proud Hayden was to become a big brother. Dr. Scavina came in and said your children must think you can handle the world, I said sometimes it is a true test of my strength. Some days I feel successful other days I feel overwhelmed. She discussed with me the recovery time for post viral ataxia and tried to do her very best to reassure me Julia's case is much different than Hayden's.  She also confirmed that Julia does not have hypotonia other than what is caused from the onset of the viral ataxia. However, she did mention Julia is hyper reflexive just like her big brother and mama. Guess being double jointed and flexible comes in handy at times :) We were also fortunate to see the neurologist who treated Julia while she was in the hospital. We really liked her but decided to see Dr. Scavina because she knows our family.  She was very excited to see Julia's progress. After a consult with both neurologist it was determined that Julia should have a baseline EEG completed. Once our neurology appointment was finished Julia and I ventured to the hospital cafe for lunch before our pt session.

Next on the agenda was physical therapy. Julia has been seeing her big brother Hayden's therapist Wendy. Julia loves Wendy and plays extremely well and cooperates for the most part. She is still determined to get what she wants and successfully motor plans how she is going to get it. While Julia was in her pt session I had the opportunity to talk with Faith, one of the pt's who is apart of the vestibular team.  The conclusion of this testing showed Hayden does have a challenge with vestibular ocular reflex.  What this means I am not sure, we will need to see a specialist that can help us figure out vision strategies for Hayden. The team also confirmed Hayden's CP.  This has been brought up before but the doctors were hesitant on providing that diagnosis. After all he has been through I hope everyone can agree this is the final diagnosis. I truly am finished searching for the why's behind Hayden's delays. I just want to focus on the right now. How to help Hayden live an independent life and strategies for him to meet his full potential. I have come to realize Hayden is leading us on his path and only Hayden will show us what he is fully capable of doing. I believe in my heart of hearts this kid is going to do amazing things.  So, our next steps with Hayden are to visit a new opthamologist who specializes in this vision disorder and a cerebral palsy orthopedist.

Today I returned to AI, I feel as though I live there lately. Julia had physical therapy and her EEG today. She did so well in physical therapy. My little lady was cruising! What a relief we are getting all of our skills back. She even decided she wanted to walk with a push toy. She did pretty well and only lost her balance a few times. I think with continued therapy this little girl is going to recover. She has proven she wants to do this and is determined. We had lunch again in the cafe at AI before our EEG. Once again it was a mad house with no where to sit. I am looking around for a seat and some great staff from the cardiology department decided to share the table with Julia and I. She of course won the cardiologist and nurses over with her big smile. I think they could have stayed for hours playing with my sweet girl. After lunch we ventured to have our EEG which was back up in neurology. Of course since I am a frequent flyer of the neurology division the staff asked why I was back again. With a smile I said EEG today. We were taken back fairly quickly however Julia was not digging the electrodes on her head nor the flashing lights. She was extremely exhausted and just wanted to sleep. It broke my heart to see her so sad. Luckily that part last 5-10 minutes until I was able to hold her and she fell asleep laying on me. We got to rest for an hour until the procedure was complete. Finally we went to visit our friend Connor and his mommy while they were staying overnight at AI. I remember all to well how lonely the hospital will be.

Now, we are finally home ready to venture to AI again tomorrow for OT. Boy these kids keep their mama and daddy busy.

Until next time....