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Sunday, December 30, 2012

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!!!

Monday, December 3, 2012

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!


Wednesday, November 14, 2012

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.




Thursday, November 1, 2012

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.

Tuesday, October 23, 2012

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. 

Wednesday, October 10, 2012

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







Friday, September 28, 2012

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.

Wednesday, September 12, 2012

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

Thursday, September 6, 2012

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....

Friday, August 31, 2012

One week post discharge update

It is hard to believe it has only been a week since we were discharged from AI Dupont Hospital. My head is still spinning and going in a million directions. I am still trying to wrap my head around all that has happened with Julia. It amazes me how life can change in one split second. I have become so absorbed with all of Hayden's medical needs that this situation has struck me out of no where. Slowly, I know things will return to normal. Right now life seems so crazy, but I truly am hopeful once early intervention starts things will calm down.

Early intervention came to our home to see Julia on Thursday. Wow, what a different process it was this time around. I came into the Part C program knowing exactly what it consisted of. However, I still had questions, will Julia qualify? Those questions were quickly answered with a yes. Given Julia's medical release of post viral cerebellar ataxia she will qualify until she returns to her previously mastered skills. Again, this has been so hard for me. I am having a difficult time separating Julia's ataxia from Hayden's. I have only known how to be a special needs mom to Hayden. I am still figuring out how to manage both children with various needs, how to balance doctor and therapy appointments. Because I tend to be a little type A I feel like I need to have this figured out already. I struggle that I do not. The wonderful therapist at AI are trying their best to reassure me that Julia is going to be okay and that Julia is different from her brother. Only time will allow me to believe this. I know logically they are right but my brain will not shut off the worry.

Julia has been doing really well. She is crawling and pulling to stand. She still struggles with maintaining balance and trying to cruise. However, she is trying so hard. She is so strong willed that I know she will figure it out again. She really is not a fan of physical therapy, not that the therapist are not wonderful she does not like help. My baby girl has always been so independent and I hope this independent personality will provide to be a benefit in her recovery. We have had two pt sessions and one ot session. Next week we will venture to see her big brothers neurologist. I don't even know what to think or feel about this visit. I want her to look Julia over and tell me she is going to be okay. I want to know if Julia is going to experience any setbacks from this temporary condition. I want to know if Julia maybe has low end of average muscle tone. Most of all I do not want to put my little girl through anymore tests. Her big brother has gone through so much and she went through so much recently. I do not want to hear lets run a test for this or that. Somehow, I need to figure out how to approach this visit differently. I know I will figure it out, but today I do not have an answer.

Hayden started back to preschool this week. He was so happy to return to school and play with his friends. He has grown up so much this last year, which is bittersweet. I love that he is gaining some independence but it saddens me my little boy will be a big five year old! That seems so surreal.  He is talking so well and trying so hard to walk. We are eagerly waiting his results of his vestibular testing and what that is going to mean for his future and educational goals. It will be so nice to have some explanations to his delays. Although, the explanation will never allow me to understand why things happens the way they do. Why it happened to Hayden. The only explanation I have is he was meant to be apart of our family just the way he is. He was meant to give me strength that I did not think I had, and he was meant to help others. Boy that little guy brings a smile to my face everyday and to many other people. Hayden is also getting very excited to play soccer, which his daddy is helping to coach. He thinks that is pretty neat most days, other days he says its silly that daddy is going to be coach. I know he will enjoy the daddy son time like he did during baseball.

I am still so thankful for all the amazing people that have supported me during this time. I think everyday just how lucky I am to have so many people stand by our family. I truly hope everyone knows just how the small little things helped me and continue to help me overcome this new challenge. Everyone will always have a piece of my heart and gratitude.

Until my next update...


Thursday, August 23, 2012

Thoughts from Julia

It was great to come home yesterday and I was really excited to see daddy, Hayden and Cody. My stay in the hospital was a little scary at first because of all the masks but it got better. I got use to people and started to like some of the doctors, nurses and therapist. I know I scared a lot of people especially my mommy and daddy but I am going to be just fine. I am starting to crawl again and I even got myself up our family room step. I am determined to not let this ataxia keep me down. I will be home with mommy for awhile so I will miss playing with daycare friends. I know my mommy will set up some play dates for me so I don't get lonely with Hayden starting school. Now I am going to start my physical and occupational therapy adventures. Secretly I was jealous Hayden got to go play and I didn't. I also wanted to thank everyone for helping my mommy. She was really worried and scared but all of the nice thoughts and prayers helped her get through. Well, I am going to try to terrorize Hayden now. I know mommy will keep you updated on my progress she is good at that. Hope you enjoy my photos below. Now you can see where we spent our time:)

P.S In case you did not hear I had HHV-6 aka Roseola which caused post viral cerebellar ataxia. Fancy right?

Much love

Julia

Wednesday, August 22, 2012

Five days and four nights Julia update

Staying in the hospital is counterproductive especially when you have so much time to think. It has been a challenging five days for me. I have watched my daughter go through so much and it breaks my heart. However, being here and the only things to do are to think and visit Dr Google can cause a recipe for disaster. If anyone knows me I research, I research online, in books, and by questioning medical professionals. AI offers a fantastic online medical history site while this site is great, it can be bad, as well. Last night I spent time reviewing the sixteen test that have come back for Julia. That is right sixteen!! The doctors have said they all looked good except the lumbar puncture results. I know this and this is why we are still here. This did not stop me from using Dr Google on other results that showed high or low values. It was a vicious cycle I think I was on the verge of a panic attack. I quickly was reminded by my cousin and friends to stop doing this to myself. I listened but my mind still raced. It makes it difficult to sleep and difficult to remain positive.

Today I was awake around 5:30 ish the construction at the hospital was starting. The first round of attending doctors arrived at 7:20 which woke Julia up. I never understand why this happens but I know there are other children to see throughout this hospital. They will be back around 930-1030 hopefully with the lyme's disease results and hopefully with going home. I am ready to be home. Ready to shower and sleep in my house instead of the hospital. I am ready to move on the path of recovery.

Julia is very happy now which means she is starting to feel like her old self. I am amazed at my daughters strength. How did she get to be so brave? Yesterday she decided to pull her iv out she was over it:) unfortunately they tried putting it back in. Just like her mommy she has tricky veins that we decided to stop poking her. Instead I opted to give her the antibiotic via an injection. At 12:40 last night a team of five came in. My sweet girl had to endure three shots at once. It was so hard for me to see. It burned she cried and needed mommy love before settling down for the night. I almost forgot to mention Julia was crawling around slowly with Hayden yesterday and she was playing with her friend Natalie. These are promising signs.

Now we wait for more test results and I pray we are released today. I also cannot thank everyone enough for the texts, Facebook comments and for my friends and family who will talk to me throughout the night. Even at 1 and 2 am. Thank you from the bottom of my heart. I love each of you more than you can know. I know Bob and I are blessed with an amazing support group that you don't realize until situations like these. So until my next report much love Renee & Julia AI DuPont 3F residents.

Tuesday, August 21, 2012

Four days and three nights update on Julia

Here we are on our fourth day at AI DuPont Children's hospital. Julia had another great night. We were only woken up a few times last night I think the nurses are starting to feel bad. Last night we were up pretty late since we took a late afternoon nap. Julia decided her idea of partying was playing in her jail and watching Elmo at 10:30 last night was completely acceptable.

I am starting to get use to this place. Seeing familiar faces and listening to familiar noises. I have even spoken to a few parents that have been on their tour longer. It saddens me that so many children are subjected to hospital stays. However, I feel extremely blessed we have a great hospital here in Delaware.

Today, started out like every other day our first rounds started at 7:40. Julia was not digging the interruption nor was I to be quite honest. After we woke up we had breakfast and played with some toys. Shortly after came in the infectious disease doctors and pediatrician. Julia likes this group she was even giving them the Julia stick out her tongue look. This is how you know Julia likes you. We got confirmation that bacterial mengitis has definitely been ruled out. This means we are off solitary confinement. Woo hoo we can have visitors and we might be able to walk outside. We are thrilled and I know Julia is eager for the yellow masks and suits to go away.

We also had some new visitors today A physical therapist stopped by. Julia decided she did not want to play and clearly displayed her fancy attitude. That is my strong willed girl. Next, our friends Shawn and Natalie stopped by. Thank goodness for guests. It is hard not to go stir crazy here. It was great to have company and Julia loved seeing Natalie. I can't say thank you enough for the food and toys. Julia is now sleeping as I write this new post. I am eagerly waiting to see my baby boy and my husband who are coming up soon. I miss our family.

We are staying another day which is tough. I just want to be home but I know this is where we need to be. Julia is being testing for Lyme disease and we are waiting for these results we also are waiting on other tests but there are too many to list. My sweet girl is going to need a few months of therapy to regain her strength and skills. I don't know how I am going to handle another baby going through early intervention. I know these are for different reasons but it still is hard. Luckily, we are armed with knowledge from Hayden that allows us to get the best therapist to treat her. So we wait and hopefully tomorrow we are ending our stay-cation at AI. Thanks again for all the love.

Xoxo

Monday, August 20, 2012

Julia had a good night

Julia did very well last night. She was so excited to see her daddy and Hayden. She even got a visit from her other favorite person Candice and from grandma. Luckily, she has been eating and drinking some which is a step in the right direction.

This morning we were woke up by some medical students followed by residents. Julia still is not sure about all the yellow masks, so we look for mommy for comfort. We had some pancakes for breakfast which by her smile meant they were yummy. After wards we watched some Elmo on tv. Julia hasn't really watched tv at all but Elmo was pure magic. Elmo has calmed my sweet girl down I guess there are far worse things I could be doing than allowing some tv watching. I just received a nice envelope full of sweet handmade cards. It sure made me cry. I cannot wait to show them to Julia. One was from our sweet friend Natalie who is just a few months older than Julia. She wanted to be sure Julia was not scared because she understood how this place could be scary since she spent some time here. Then her dear family my dear friend Shawn thank you for the little things and the brief smile on my face. The final card were from our other friends Matt, Shannon, Jack and Connor. They are such a support to me and I always admired their strength during challenging times. I am overwhelmed by the thoughts and prayers for my family. They are from new friends, old friends, family, co workers, business associates and the list goes on. This type of love reminds me that there certainly are a lot of good people in this world. I am reminded just how thankful we are to have so many supporters. Just the little comments, text messages and calls are getting me through another wrinkle in my life. I love you all for the kindness!!

Our new round of doctors came in. I was happy to report Julia has been sitting for a few moments and even pulled up to her knees!! We still are experiencing some ataxia but no where near what we faced earlier this week. Now we wait for more results and wait to be seen by physical therapy. Since we are frequent flyers to the outpatient physical therapy department I requested two therapist that we adore. I hope to see them this afternoon. Hopefully, we can develop a game plan for Miss Julia and hopefully tomorrow we can kick AI to the curb.

Sunday, August 19, 2012

My worst nightmare

My heart has been torn in so many directions lately. This time it is my sweet baby girl. Unfortunately, my daughter has become ill with a virus that caused her to become ataxic. Imagine the panic I felt when I watched my beautiful daughter who has been developing normal loose those skills. She became so weak and lethargic and had difficulty even sitting.

We took her to the pediatrician on Thursday. Since I am an experienced special needs mama I was armed with a video in hand. My original fear was confirmed that the behavior she was exhibiting was not normal. He thought Julia had an enrovirus that had been circulating our area. It fit all the signs. Given her big brothers history he thought maybe she had some low tone and we should make an appointment with neurology. I stand weeping once again in my pediatricians office. Thinking how can I possibly do this again. Thinking selfishly what I did to deserve these things. I quickly reminded myself this is not what I should be feeling other children are experiencing far worse medical diagnosis. I left there Thursday thinking I had another child facing challenges. I left there thinking this was just a virus running its course.

Fast forward to Saturday. Bob tells me she is still extremely irritable and unable to support herself. I rush home and off to the ER we go. Of course it is summer in Delaware and I have two words beach traffic. We got here in an hours time and was taken back immediately. I spoke to doctor upon doctor. We are getting consults from neurology. Next thing I know we are headed for a CT scan, MRI, and spinal tap. Hours of testing a multitude of labs and the words of being admitted at 10:45 last night.

I was told at that moment it could be viral meningitis or encephalitis. I was told it could be post viral acute cerebellar ataxia. Okay I am familiar with all the big medical terms. Heck I probably can publish a medical dictionary. So I wonder is this impacting her for the long haul what are we facing.

It is now almost 24 hours since we were first admitted. What we know is it doesn't appear to be bacterial. We have seen a neurologist and an infectious disease doctor. We are running more tests and are leaning towards a virus causing ataxia. My sweet girl is in an isolated floor for infectious disease. She is seeing strangers in masks and cover ups. Little did I know her big brothers strength has warn off on Miss Julia. She has been so brave through every poke, prod, and test.

Now we wait. Wait for results wait to see how Julia's little body recovers. Our little family cannot wait to be complete again. Bob and I can't wait to bring our baby girl home. Be strong baby girl mommy loves you so much.

Thursday, August 16, 2012

Vestibular dysfunction testing, check!

Yesterday our little family except Julia ventured off to AI Dupont Children's Hospital for the anticipated Vestibular testing for Hayden.  I am so thankful Bob was able to take off of work and join us for this test, it was going to be a long day. Hayden is normally so great during tests but sometimes things scare him and he just needs daddy. So, off we went Hayden was armed with both mommy and daddy for this long day.  I have been waiting exactly two years to be able to perform this testing for Hayden. My mommy gut has told me that something has been off, immature, underdeveloped with Hayden's vestibular system and no blood test or MRI could tell us these things.

We arrived for our first appointment at 10am which happened to be a physical therapy evaluation. This test even though I dread it should be relatively easy. I kept thinking to myself please Hayden show the therapist what you got. Let them know just how awesome you are. If you have been through several physical therapy evaluations like we have you know the Peabody is dreadful. It is dreadful from the perspective of showing Hayden's gross motor skills below a 1 year old. That is often a hard pill to swallow but I try to remind myself of all the gains Hayden has made. Well, Hayden rocked that Peabody assessment! I have never seen my man work so hard and show off what skills he has. My little man even held tall kneeling independently for 3 seconds. I know you are thinking 3 seconds but really 3 seconds is amazing. Hayden also showed the therapist he could walk up stairs holding onto railings without support, walk in his walker like a rock star, and even try to help take off his shirt. I was so proud of him yesterday he could not have done any better. While I know he is not at the development level of a 4 year old I know he has improved so much. Yesterday was proof he is simply amazing and he works harder than any child I know. It was also nice hearing from a physical therapist that does not normally treat Hayden that he is doing amazing and that he has nice skills to be able to one day walk independent. I guess it just allows us to keep the hope alive that one day he will take a few independent steps.

After pt we had a gait analysis done at the gait lab. This test just essentially video tapes Hayden with and without his braces. Hayden loved this test because he could race his daddy in his walker down the red carpet. Hayden also loves being on video so this was a win win for Hayden. The best part of this test for him was picking out a cool present at the end. What did he pick?  A little blue guy as he fondly calls the little alien. We had a short break to grab some lunch but not to much since we had some spinning to do in a rotatory chair.  After lunch we decided to let Hayden play on the playground. I love the hospital playground it is adaptive and he can climb around freely. Hayden being Hayden was trying to make friends and say hello but I think the other children were a little shy yesterday. We lost track of time and had to rush to our next appointment which was in the audiology department. The testing in audiology was not for his hearing but for the working of his inner ear and various other vestibular testing. There were so many and I cannot rattle off all the technical terms. However, what I do know is one test in particular, the vestibular ocular reflex test that I have been curious about confirmed my suspicion. Hayden has a nystagmus and for those not familiar what that means is basically involuntary eye movements. Most people experience nystagmus after swinging or spinning and it goes away. Hayden's tends to continue after these types of activities which is not normal.  We discovered yesterday that if Hayden is turned right his nystagmus is beating to the left. Basically, his eyes are crossing over visual planes which is not normal, this also indicates when Hayden is upright his world is jumping. The other test that showed a slight deviation is stationary nystagmus. Hayden was positioned laying flat and we turned his head to the right and left. When his head was turned to the left we saw two to three beats of nystagmus. The physician had said the variance is not enough to determine if he is impacted by stationary vertigo but it is a finding.

The day was long but Hayden was so strong and so brave. He listened so well and focused hard on what he was asked to do. We celebrated by taking him to the Disney store and letting him pick out a gift. I know we are probably setting expectations every time he goes for testing he deserves a gift, but oh well. I think Hayden does deserve a little something special because he is just an amazing little man, is brave and much stronger than a four year old. He decided to pick some cars toys like we needed more but that is what he chose. Now, I think we have close to 300 cars however it makes Hayden smile and that is all that matters. I also let him pick the dinner menu and he requested pizza so it was pizza night in the Schlenner household on Wednesday.

Now, we wait for our results. The team gets together once a month to review all the children they tested in the month of August. I eagerly wait the phone call from the coordinator on the findings. I am thankful we proceeded down this path and now I know a little more than I knew yesterday. I know this does not change the direction of what we are doing for Hayden but it does give us some new ideas for therapy techniques and how to better help Hayden organize his body in relationship to space.

Saturday, August 11, 2012

Lifes little lessons

Amazing how life can take you in so many directions. This week has definitely been a direct reflection of how life is simply amazing but challenging at the same time. I have had a pretty emotional week. My week was just spiraling down a path that was destin for disaster. It was filled with worry, sadness, self pity, and stress. I also cannot forget to mention sickness. This time it was not the kids it was me, yup got hit with bronchitis.  Bronchitis has fully won this battle but I am slowly regaining my energy and hopeful that in a few more days I will begin to feel "normal" again. Whatever normal is, right? Since I am a self proclaimed social media junkie I was able to see some happy things happing in the world. People getting married, people going on fabulous destination vacations, people running marathons, people enjoying every day life, people announcing engagements or pregnancies,  and new lives being brought into this world. The new lives being brought into this world reminded me about all the amazing life memories.

Tonight, I reflect on some wonderful memories that are happening in my home. Memories that melt my heart, memories that make me proud, memories that show me love, and memories to last a life time.  My baby girl turned 13 months old on August 10th.  I know I should stop counting in months but it is so hard when she is your little baby.  Julia is such a strong little girl, determined in everything she tries, curious about the world we live in, in love with her big brother and daddy, and most of all my little sweetness. No one can take away our mommy daughter snuggles and that bond that was formed the moment she was conceived.  Julia is my amazing little lady and full of smiles.  She also has to endure some of my fears. Fears of not meeting milestones, fears of germs, and fears of not being everything she needs.  However, my sweet sweet Julia in every way is helping me put my fears aside. She reminds me about the small little joys in life.  Yesterday, on her 13 month birthday my little lady decided to start cruising. It is slow and steady just like everything she tends to master. She was so proud and you could see the spark in her eye. The new found ways to explore her new world. After all there is a lot to see still. 

Hayden who is my strong strong little man. He continues to amaze me every day with his fight and determination. He has gotten so much stronger lately. He really is determined to try to ditch his walker from time to time.  We have been visiting Easter Seals on Friday's for therapy and Hayden wants to walk every Friday. Hayden does not want to walk with his walker he wants to walk by himself and he forcefully will tell his therapist that he is not using his walker. For the past few weeks we have been walking holding the hand rail and my hand. How I love walking holding hands with my son. It is an amazing feeling his little hand inside of mine. He works so hard to walk down the hall at Easter Seals. However, he does it and what more can you ask for. He is my angel.

Today, I also got to sit and really watch the bond that has developed between Hayden and Julia. They love each other unconditionally. The look forward to seeing each other every day. Sure they fight over Julia stealing Hayden's Mater or Lightning McQueen but they would not be siblings if they did not fight. However, what I love the most is watching them interacting. Hayden makes Julia smile and belly laugh better than anyone. Bob does an excellent job of this with our children, he is always a good dad bringing the calm and laughter to our home. Bob has some competition in Hayden because the laugh is endless her big brother is just the funniest person to Julia.  He shows Julia how to climb on things she shouldn't. He has her climb over basket ball nets like they are obstacles courses, standing at their kitchen and cooking me a meal, emptying all 245 cars that Hayden has aquired out in the playroom, eating chalk, wrestling our yellow lab Cody, and throwing balls to name a few things. These very moments melt my heart. These very moments remind me as much of a blessing Julia was to Bob and I she truly is the world to Hayden. Hayden will always have his sister, he will have a life long friend, and he will have a bond that is stronger than the bond we provide as his parents.

Life can be challenging and some times it overwhelms me, but these special moments remind me this is what life is about. Life is about making memories and most of all life is about love. Love for your family, love for your friends, love for the people who are in your life for a brief moment, love for the people who just walked into your life, and love for people you have not met just yet. Simply put life is truly a blessing and amazing.

Sunday, August 5, 2012

Simply Perfect

After writing an emotional post yesterday and really reflecting on my journey this week our weekend ended perfectly.  Bob and I took the kids to the outside pool at the Y today. This may seem like an ordinary venture for many people. However, an ordinary venture turned into a simply amazing day.  The weather was beautiful, the pool was not crowded and the kids were perfect.

I love the kids pool at our local Y it allows Julia and Hayden the opportunity to explore independently. Our baby girl is such a dare devil. She really has no fear and did not mind trying to venture away from Bob and I today. However, she is one and despite her thinking she is at least five we had to stop her in her tracks on several occasions. Then there is my sweet sweet Hayden. Hayden loves the pool, he loves to splash, and swim. He loves watching other kids swim and especially watch his daddy go in the deep end where he does not explore. However, today was perfect. I probably will over use this word but really perfect describes today.

The pool provides Hayden with a sense of independence. He does not have gravity fighting against him in the water. My little amazing boy was standing in the water. Standing with ease and standing with confidence. Does it get any better than that? As a mother who has longed to see her first born child stand alone days like this make my heart full. The pride exuded from Hayden's face will forever be ingrained in my mind. Now, if standing was not magical surely Hayden letting go and swimming in the way Hayden knows how to swim is the moment you say yes be free. Free to explore, free of the gravity, free of struggle and free to beam with confidence that my little boy did something amazing today.

I sat for awhile with a permanent smile on my face. Watching my son playing with his daddy. Watching my son splash with his baby sister. Watching my son swim, how cool is that? I really did not want our swim day to end but hungry babies and a growing awareness that Julia needed to nap became evident. We left the Y today and it was perfect.

Hayden my sweet perfect boy I hope we have many more perfect days. I love you and you simply amaze your mommy every single day. You are my inspiration.


Saturday, August 4, 2012

Reflection on life

On Wednesday I participated in a video interview at Easter Seals about my journey as a mother with a child who happens to have a disability. While, I have told Hayden's story many times this was different. The interview was intimate and gave me an opportunity to reflect on how four years has changed my life. You would think by now that I would not be concerned about what I say or how it is presented but I was. Sure, I have spoken in DC, given testimony a few times at our state capital, spoke in crowds of 300+ people and even written on this blog for all to see. However, Wednesday did not compare to any other times I have spoken about Hayden. It was almost cathartic in a way.

The interviewed started out explaining Hayden's medical condition, at least as we know it today. This was the easy stuff, four years ago, it would not have been easy but Wednesday it was. Wow, to think I went from being afraid to say my child was disabled to embracing who he is in four years is simply amazing. I remember December 31, 2007 like it was yesterday. Sort of surreal now, if I think about it. I went to the hospital ready to meet my son, ready to see what he looked like, ready to hold that precious being I carried inside me for 38 weeks. My labor and delivery was not the ideal fairy tale you dream about. In actuality it was a scary time in my life. A time that I did not know if I was going to pull through but I did. I survived one of the scariest joyful moments of my life. My road to recovery was tough, around eight weeks post partum I finally got my strength and blood supply back to normal, I thought now lets celebrate my new life I brought in this world. We cherished Hayden's calm passive demeanor. He was such a happy content baby. Little did I know there were signs at 3 months that something was just not right. However, six months came and then nine months came. It was time to face the reality Hayden was not hitting milestones like other children his age. I had to break down and face the facts with our pediatrician, who by the way is my rock. I have written before how much I adore Hayden's doctor, but I know today we are very fortunate to have him apart of Hayden's journey. The next few months were a blur, I went alone to an appointment to have Hayden evaluated. I was so uneducated at the time that I should have not ventured on this journey alone. Hayden was assessed by therapist and a developmental pediatrician. I don't remember everything they told me but I remember hearing your son has hypotonia and might be mentally disabled. What he has hypotonia and mentally disabled my son who was going to be a football, lacrosse or soccer star. This can't be right. I had so many dreams for Hayden and they were crushed, at least I thought at that very moment. I cried, I called my dear friend and cried some more. I was crying because I was scared, I was crying because this was not suppose to happen, and I cried because I was sad for my son.

Fast forward four years, I now know those feelings were normal. I know that I did not purposely give my son a disability. I know that I am truly blessed beyond words to have Hayden in my life. I have come so far in this journey as a mom of a child with a disability. I have learned to admit that my son has a disability and that is not a bad word. I have learned to embrace differences. I have learned to cherish the small things in life. I have learned that I am  a stronger person than I thought I ever could be. I learned how to fight for services for my son. I have learned to take things one day at a time and most of all I have learned to redefine who I am.

In this journey things have happened. Some things I wish did not happen, somethings if I could take back I would but it would not be life if there were not ways to learn and grow. Sure, I could call and talk to friends and family more. Sure, I could be a better worker or advocate but for now I am Renee. I know I carry my heart on my sleeve, I know I am strong, I know I am emotional, I know I love unconditionally, I am educated, I am compassionate, a good wife, I try to be a good friend and daughter. However, I do know I am the best mom I can be to my two beautiful children.

I am reading a book a dear friend let me borrow, the book is titled Bloom. I am not finished reading this book, but this book has made me cry. Cry tears of joy and cry because I had similar feelings about Hayden even though he is not rocking an extra chromosome. I enjoy reading books that make me think and challenge my perspective. This book has done both. Which reminds me I am part of a national program that is funded by our state's  disabilities council. In this program I meet once a month and learn more than I could have ever learned about being an effective advocate, parent, and well versed on disability rights.  This program like the book I am reading has changed my perspective. I view things differently, I believe my story does make a difference, I am a better mom and wife, and I am not afraid to knock on some politicians doors to get what I need done. Most importantly this program has brought people in my life that I needed in my life. People who get it, who have been there, who are parents of children with disabilities. I feel like they have been in my life forever, but they have not. However, I do know they will continue to be apart of mine and Hayden's journey!

I was always envious of my friend Danielle who wrote a blog. She is a far better writer than me, but mostly I was envious that she started writing down her thoughts somewhere. I thought at first I did not want everyone knowing what was going on in my life, but I soon realized I needed to write. I write to provide updates on Hayden and I write for me. I started this blog because we have a large family and we have many supporters of Hayden. It was a way to tell everyone what was happening in Hayden's world so I did not forget every detail. I often do not have time to make phone calls to everyone but I try to find time to make updates to this blog. It is important to keep everyone informed and it is therapy for me. What I cherish the most about writing is the support I receive. While some people might think I should have done this or tried that they support my decision to write about our life. This is all I need. I know I do not always have the right answers, I know that my views on procedures, tests, programs, doctors is not going to be the same for everyone. However, I do know I am making the best choices for Hayden.

Hayden has turned into an amazing four year old little boy. He has touched more lives in his four short years than I have touched in 34 years. He brightens my day and makes me laugh. Hayden is determined and full of life. I do not ever want to take that away from him. I do not ever want to let his disability shelter his dreams. Hayden is four and we treat him like any four year old. We go out shopping, eating in restaurants, family vacations, walks in the neighborhood, birthday parties, etc. Sure, I have people raise an eyebrow when they see my four year old not walking. People stare and wonder what is wrong with him and my answer to that question is nothing is wrong with him. He just happens to have hypotonic cerebral palsy. That does not define who Hayden is. Hayden will continue to be strong, full of life, happy, determined, and a typical little boy. As Hayden's mom I will continue to fight and explore what I think is right at the time for him. I love my little boy more than anything and that will never change.  So, I thank everyone for being apart of this journey with me. I thank you for the support and know that while I may not have all the answers I try my very best to make informed decisions. Thank you for loving Hayden, for who he is and what he has accomplished and thank you from the bottom of my heart for accepting our little family as we are.

Wednesday, July 18, 2012

Vestibular dysfunction, Maybe?

Off to AI we went on July 11th to see Dr. O'Reilly the ENT who specializes in balance disorders.  After the latest MRI and blood results I talk to Dr. Scavina, Hayden's neurologist about revisiting the possibility that Hayden has vestibular dysfunction. She agreed, that it was reasonable to seek out Dr. O'Reilly again for his thoughts. We first met with him when Hayden was 2.5 years old at the time, Hayden was too young for testing. Here we are 2 years later, still with balance issues, still with a tentative medical impression of hypotonic cerebral palsy, and still with questions. Dr. O'Reilly discussed Hayden's progress while he has made some amazing strides we are in a no better no worse situation with Hayden's balance and walking skills. Please do not think that I am taking away from all the amazing things Hayden accomplished this year, I am not, but balance and safety is such a concern. Hayden is getting older and I worry so so much what the next year brings. I worry what it will mean for us when Hayden transition's to kindergarten. Are we going to be faced with the possibility of a wheelchair? I just do not know.

Dr. O'Reilly was happy to see us again, he is very warm and inviting. I do know some vary in opinions with him, but I have found him to be extremely approachable. He reviewed Hayden's medical records and threw a curve ball at me. He said I saw Hayden's recent MRI and his cerebellum is small for his age. Imagine my shock when those words came out of his mouth. All I could think of is really? No one has mentioned this to me before? He said I do not know if that is the true reason for Hayden's delays but could be a factor. Yeah, you can say that again, while that does not change how amazing Hayden is it does explain some things. I guess a fresh set of eyes on Hayden's medical records is important. Hayden has a good bit of specialist, cardiology, neurology, orthopedics, ophthalmology, ENT, Genetics and his pediatrician. All have different opinions, all have different specialties, and all with different approaches to Hayden's care. I love every single doctor, there is not one I would trade in. Now, if I could trade in some of the PA's I would, at times. Anyway, the point to my rambling is I wish there was a way for every specialist to sit down and review Hayden's file at once. Take an interdisciplinary approach similar to the school system to look at his file with fresh eyes and different perspectives. Look, what I learned just by seeing someone new. We spoke briefly about my concerns still and he agreed without hesitation it is time to test. We will begin our testing on 8/15. It is a pretty long day for Hayden, but I hope it brings some light into Hayden's balance instability. While, if we find out it is a vestibular dysfunction, I do not know what that will mean for us. I know it will mean different therapy but it would help explain some things for Hayden.

Now, we wait for our big testing day. Honestly, I think Hayden will have fun with some of the test. He starts out with a physical therapy evaluation. He views physical therapy as play so this should not be so bad, we then move onto the Gait Lab. This part is tricky, I do not know how they are going to get a thorough Gait analysis completed on Hayden since he is not walking independent. Dr. O'Reilly still wants to try. We have a hearing evaluation. I know he will pass the hearing screening but what we may also learn is the function of his inner ear. Finally, onto some testing that involves looking at his nystagmus, I know spinning is involved. Hayden will love this. Anything that involves swinging, spinning, rough housing, and tumbling Hayden seeks out. I think he is a sensory seeker, for whatever reason this helps him organize his body. I know that may sound strange but there maybe some sensory therapy that we can incorporate to help him. What I like most about this is after the testing the doctors, physical therapist, etc meet as a team. Finally, a team to review the assessment. I probably will not have results for a few weeks, but I anticipate the day I receive my call.

Until, we test we are enjoying our summer. Hayden has loved celebrating his baby sister Julia's first birthday. He helped decorate the house and mix cupcake batter. He absolutely loves birthday's and is eagerly waiting his birthday in December. We just finished summer school, it went by so fast. He seemed to enjoy his time there this summer. I secretly think he will miss his teacher and para's that he loves so much. He is getting physical therapy at Easter Seals on Friday, and my child is so happy to go. I mean seriously who loves pt, this boy! He cries leaving, I have this reaction any time we are there. It could be just to visit our friends in the Development department it does not matter to Hayden. He loves Easter Seals. We are also doing swim therapy again at AI, we took a little break but I feel he needs some time in the pool. Hayden is so excited to see Miss Wendy next week to swim. We will probably try to go the the beach a few times before summer is over, and count down to our big vacation to Disney this year. He is over the moon excited to fly on a plane and meet Mickey Mouse. Well, until our next post enjoy your summer.

Thursday, July 12, 2012

My baby girl turned 1!!

I know the majority of this blog centers around Hayden but I do not want to forget my littlest love Julia. I cannot believe on July 10th my baby girl turned one. What an amazing quick year it has been.  Julia definitely beats to her own drum. She chose to come into this world when she wanted too, six days late and she still has that same personality. I love her personality and what she has brought to our family. She really has completed our family.  She has helped her big brother in so many ways, probably more ways than she could ever imagine. We had a small party with family on her birthday and she loved every second. I even think she realized it was her special day. Julia even enjoyed a cupcake, her very first one, she devoured every last crumb. Now, I leave a little reminder of just how special my baby girl is.




Dear Julia



On Tuesday, I watched you become a toddler right before my eyes. My precious baby is growing up so fast.  I still remember July 10, 2011 like it was yesterday. My water broke at 5:30 in the morning and we were on our way to the hospital by 6:30 am. You were so ready to come into this world that my contractions were coming on strong, your daddy was worried we would not make it so he ran a few red lights, but we safely made it to the hospital. I tried very hard to go without pain medication but mommy could not take the pressure, luckily we had a wonderful nurse tell a little white lie to the doctor so we could get some pain relief. It was just enough to take off the edge. Within an hour you arrived, at 11:32 am a beautiful baby girl weighing 8 pounds 2 ounces was in my arms. I worried for so long how it would be possible to love two children at once , but from the moment you looked into my eyes it was pure love. I knew right at that moment you would change our lives forever. We spent some time getting to know each other until your big brother arrived. Hayden was so excited to meet baby Julia. When he attempted to hold you, my heart grew so much bigger. My two babies together forming a bond that will last a lifetime.

I have watched you develop into a curious little lady. You already think you are four with some of the things you try to do. You have done things with ease, learning to sit, feed yourself, crawl, stand and even cruise. You simply amaze me with all the little things you have accomplished your first year. What you may not realize is how you have inspired Hayden. Hayden loves you so much, and he wants to do everything with you. It includes so many things that your big brother has a tough time doing but amazingly, you have given him the confidence he needed to try things he was too afraid to do. Hayden simply adores you and for that I cannot tell you how happy that makes my heart.

I hope we will remain close and that you will always love your mommy. I know there will be times when we do not get along but I will always love you. Love you for who you are, love you for all that you have accomplished, love you for providing your brother with inspiration, and love you for completing our family. Happy first birthday baby girl. I cannot wait to enjoy more birthdays with you.

xoxo

Love-

Mommy