Back to the Grind...

We had a good first weekend home with many adjustments. Full of our usual activities of soccer, birthday parties, playdates and even had the chance to watch my sweet Emma sing in the choir at church. Connor seems very happy to be home. We know he is feeling better because his appetite is better AND it didn't take long to start teasing his sisters again. He seems to get up out of bed and walk with his walker more each day. Connor started his 3x a week travels to Baltimore for PT along with his homebound instruction beginning. Connor jumped right back into the swing of his academics. His tutor brings him cards from his classmates, which he has been thoroughly enjoying them.

ps... Connor loved seeing his friends!

Operation Homecoming!

It was a much anticipated homecoming. Finally, after 2 pt sessions and getting lunch, we were finally on our way home. Some of our friends set up a grand homecoming for Connor. As we drove up our street, 75-100 friends and family lined the street with banners, signs and balloons. What an incredible moment for Connor! He was so surprised! He even made a successful attempt to get out of the car, use walker, and got in his wheelchair. A hush feel over the crowd as they intently watched Connor maneuvered around. Once he made it to the wheelchair, friends and family cheered for him! He was smiling from ear to ear as his friends greeted him. What a moment in time!!! Thanks to everyone who was able to make it over for the homecoming.

Last day at RMH :)

We completed our final full day in Baltimore. Although, this journey has been difficult, we have embraced the compassion that the Dr's and nurses, PT staff, and the RMH staff have given us. They have made every step of the way bearable and as close to feeling "at home" as possible. We are so excited to come home and be under one roof again. When we asked Connor what he was looking forward to the most about going home, he said, "seeing my friends again!"
We had one last surprise at the RMH. Our great friends, Katrina, Dominick, and Nate, stopped by to visit and brought all the families in the house Bruster's ice cream, in honor of Connor!!! THANK YOU!!!!
We have made so many great friends here, who are from all over the world. It has been so nice listening to everyone's stories and supporting one another. Although, we may have different situations, we are all here for the same reason...our child.

Really good news :)

We received the official 'green light' to go home on Friday!! We have been looking forward to this great news for some time now. Home school tutoring is in place for next week, hospital bed delivered, PT schedule set up and is reduced to 3x week. We will continue to travel to Baltimore for his PT sessions each week. Since Perthes is a rare disorder, it was recommended by the specialist to continue treatment in Baltimore where they specialize in this type of disorder. Also, if there would be any concerns throughout Connor's journey, we are in the same building as his Dr. and could be seen quickly. Although, it will be a lot of traveling back and forth, we know this is the right course of action for Connor's progress. We hope to see many of you when we return home. Connor is longing to be with his friends again.

Special Visitors

Look who surprised us with a visit!!!!  Fun times playing ping pong, arcade games and good company.  Love you, girls!!!! Xoxo

Tummy Time!

Thankful for a new position! He was in heaven to lay on his belly. He is really coming along with his Pt sessions. This morning his ROM in his hip reached 80!!!!!!!   Even with a smile on his face. The knee reached an new ROM of 55!!  Great day all around. woot woot!! The aqua therapy picture shows his scissor kick exercise. Thank you for all the cards and letters. That is the highlight of his day...checking his mailbox!!! 

Our Weekend Together!

Wow, what a weekend!!! First, celebrating my sweet baby girl's 2nd birthday. Saturday, we went to the National Aquarium in Baltimore. We had a surprise for Connor by meeting up with a friend at the aquarium. His face was priceless!!! Sunday, my brother and his family came down. We walked to Inner Harbor which was only a mile or 2 away. Beautiful fall day to soak up the sun, get fresh air and spend quality time with family. Topped it off by eating at the Cheesecake Factory. Yum-O!! Then, it was that time again to say our goodbyes to Scott and Emma. Although the goodbyes are hard,  we were in a better place, mentally, for the departure. It was so nice to see Connor laughing and smiling this weekend with family and friends. He continues his intensive PT sessions this week and keeping our fingers crossed that we get the "green light" to come home this weekend. 

Reunited and it feels soo good!!!

It's all about the LOVE that we felt tonight surrounded by our family. As we sat around the dinner table, I found myself smiling the whole time and thoroughly enjoying the dinner time craziness. We enjoyed celebrating sweet Callie's 2nd birthday. Emma and Connor were having a good time making crafts and doing rainbow loom bracelets with local high school girls who stopped by RMH. It was so nice to all be together again.

Baby steps.. literally...

Here is a video of Connor walking to the locker room after aqua therapy this week. Just to give you an idea of how far he has come in 1 week. Last week, he could barely get out of the wheelchair. Walking was very difficult. This week, as you can see, is much improved. Now, he's walking on his own with walker.

Videos of Connor Swimming :) (read the post below)

My Little Fish...

We have been very busy this week with Connor's PT schedule. One of the PT sessions is aqua therapy. This is, by far, Connor's favorite. He gets an hour of aqua therapy. Then there is an hour afterwards called "dressing" and "pin care". This consists of Connor showering off, getting dressed, back in the wheelchair. Then, we wheel him over to the pin care station. This is where we clean the pin sites with saline solution, drying them off, placing new sponges around each pin site. And, yes, it takes an hour to do all that. The other PT is called "land" PT, which is the one-on-one therapy. He had some great sessions this week. Interesting enough, his hip has a better range of motion (ROM) than his knee. The therapist like to get a ROM in the hip of 70 degrees while the External Fixator is on. Connor has already reached 65 with assistance. His knee is another story. The preferred ROM is 45-50 degrees while Ex Fix is on. His is only at 10 degrees. According to the Dr. and therapist, this is common for the knee to have difficulty after surgery due to the stiffness and trauma to the knee. There is an IT muscle that runs up along the side of our outer thigh that aids in the movement of the knee. 2 of the 6 pins in Connor's leg are placed in that IT muscle to the bone, therefore causing the stiffness. There are some tough moments for him with tears and grunts during PT but he continues to be a fighter. We continue to remind him that fighting it out now will make things easier later.  And, boy, that is his focus to get better so he can run, jump, and play with his friends again. We will rejoice when that day comes!
Thanks to my parents for staying with the girls again so Scott could join us for a few days. Looking forward to the girls joining us tomorrow. My sweet Callie girl turns "2"!!! We will all get to be together to celebrate. Missing my girls so much and so proud of them for handling our absence well. But then again, not sure how much they are missing us because they are getting so spoiled by grandma and Papa.
We continue to be amazed at Connor's perseverance through theses tough times. We have only been on this journey for 1 1/2 wks. and have already  taken away many life lessons. This is only the beginning for Connor on how he overcame adversity at such a young age. I can only imagine at the end of this journey, how we will look back at our experiences. 

Working on his fitness...

Week 2-  Connor had clinic appt with Dr. Standard first thing in the morning. RMH provides a shuttle service to the hospital M-F that is wheelchair accessible. We hopped aboard the shuttle bus to Rubin Institute for Advanced Orthopedics. The appt went very well. X-rays showed the hip joint in the exact position that they want it to be for healing to begin. This meant our homework with the Orthofix is over (we had to turn orthofix a 1/4 of a turn 2x daily). Another accomplishment checked off!! Our 2nd appt that day was Connor's first outpatient PT. For the most part, they took measurements and range of motion to get a baseline. Then he walked a great distance with the walker to get to his wheelchair. Good first session! Once we got back to the house, I expected him to be tired but he insisted on getting up and walking with his walker. Are you kidding, me?!?! I wanted to just crawl in bed and I didn't even do half the stuff he did. His determination is so awesome!!! Next up was getting a shower. This was his first official shower since surgery. Although it is a process, it was a successful one without tears and minimal pain. Then, as I stand dripping wet from the waist down, cleaning his pin sites, I hear his little voice say, "you are the best mom in the world!" And this time it sounded so different then in the past. Although, I may not hear it again throughout this journey but he gave me something to hold onto during those moments of weakness. To conclude our busy day, the University of Maryland Dental students came over and hung out with the kids. There were 3 girls that instantly gravitated towards Connor and they played in the game room for hours. It was so nice to see him smiling, laughing and care free. He totally needed this distraction.

Arriving at the Ronald McDonald House...

Wow, what a difference 24hrs. can do. Yesterday, I was thinking, there is NO WAY we are leaving tomorrow. But Connor had a great night sleep and ate like a champ for breakfast. Then, PT came in one last time before discharge and Connor had a totally different mind set today. He was more willing to get dressed, up out of bed and walk to the wheelchair without hesitation. You could see the determination on his face today. WE ARE SO PROUD OF YOU, CONNOR! Leaving the Peds unit was a great feeling but saying goodbye to all the wonderful nurses and staff was bitter sweet. They truly care about the kids in the Peds unit and their families. They almost become a part of your family in such a short time. We will never forget the way they cared for all of us.
So, the arrival at RMH was exciting for Connor. He knew there was a game room and a mini movie theatre waiting for him, along with lots of kids to hang out with. We spent the rest of the day getting settled. This place is amazing with all the donations and volunteer service. Connor was even learning to wheel himself around in his wheelchair. Since he had such a big day with discharge, we chose to have a movie night and just relax.
Thank you so much for all the cards, texts, gifts, emails, and phone calls. Although, it is tough for us to get back to you, we want you to know how much we appreciate your thoughts, prayers, and well wishes. It's so nice to check our text and have encouraging messages at just the right times. Love to all!!!

Bells, Whistles and Beeps-- Oh My!

Day 3- Today was a "big day" according to the nurses. It's the beginning if the weaning process of the epidural and the removal of the catheter (Allelujah!!!) All machines were turned off...no more beeps!! But then we had whistles and bells going off on the PEDS unit cuz the fire alarm was malfunctioning. At first, I thought my sleep deprivation had hit an all time high and it was all in my head. Glad to know I still have some sanity left.  Most of the day, Connor was comfortable and even managed to give us that great smile again. Since Connor was doing so well, I decided to head home for the night and spend time with Emma and Callie. Scott stayed with Connor. It was so great to embrace my girls and have some snuggle time with them. Watching Emma and some neighbor friends doing the rain dance outside yesterday brought a smile to my face. I cherish those giggles and squeals so much more now.
Later in the evening, I checked in with Scott and was sad to hear that Connor had taken a few steps backward with pain. Connor was extremely upset and scared. As much as I wanted to spend more time with the girls, I knew it was best for Connor to have mom and dad by his side to help him get over this hurdle.  My heart was torn but knew it was time to go. Thankfully, the girls have been loving their time with grandma and papa and didn't skip a beat. I arrived back in Baltimore around midnight. Connor finally got settled around 3am. Slept for a few hours before the nurse came in again. So, needless to say, it was a sleepless night for all. Today (Saturday),  Connor is a little better, just exhausted. The pain is manageable again. He did have an awesome moment with PT today. He got himself up out of bed and took 6 small steps, to the wheelchair. All with minimal assistance. Just to give you an idea of how much work it is for him to do all that took approx. 15 mins. WHAT AN AMAZING ACCOMPLISHMENT!!!

Today in Class....

Wow! Connor didn't miss much today with blogging and computers. The rain has been so heavy that the electricity and Internet went out 3 times today. The poor kiddos had to restart their computers every time yet they were so excited and eager to get back on the blog and talk to their friend.

We told Connor what we did this week and wrote other notes to him. Third grade hopes he is doing well and we can't wait until he writes back to us about his adventures in Baltimore! 

Gettin' Our Video Game On....by Allison

Connor had his best day thus far. He slept all night. So soundly, the nurses came in 2x to take his vitals and he slept right through them. Then woke with a big appetite. His first real meal since surgery included eggs, home fries, fruit cup, and a muffin. I told him the gourmet eating ends at discharge. He spent quite a bit of time in the playroom today playing video games and making rainbow loom bracelets. PT also went well. Since he can't walk til Epidural is out, they are focusing on stretching his calf and knee. The epidural is planned to come out tomorrow along with the catheter (that alone will make him happier) Then PT can work on baby steps, literally. Looks like our discharge day could be Sat or Sunday depending on how his walking goes in PT.
 

Scott and I had our first big "test" with the removal/insertion of the distraction bar from the fixator and also turning the Orthofix 2x daily. Together we passed with flying colors. Here is a picture of what our sweet brave boy will endure for the next several months.

Day 1.. or is Day 2?

It was a typical 1st night post surgery...lots of beeps/interruptions and little sleep. Day 2 has given us some HOPE with the nausea gone and starting to get movement in his legs. The epidural continues to keep him comfortable. Dr. Standard (surgeon) came to see us bright and early this morning with great news revealing that everything looked good during sx. He said there was only slight flattening (good news) of the ball joint, but could tell the ball joint was not heading in the right direction for healing, therefore, just confirmed, for Scott and I, that we made the right decision. Whew!

PT visited with him today. He was a little hesitant b/c of fear of hurting his leg but the therapists did a great job with him. Once in the wheelchair, he cruised the halls to the playroom where a HUGE portable XBox game system was waiting for him. He and Scott had a good time playing against each other. I, on the other hand, used that opportunity to rest on the waterbed in the playroom. Later, he fought taking a rest but soon his little body just gave in and took a 4 hour rest. Which gave mom and dad a few extra winks too. 

Another great PT sessions tonight. And the highlight of the day for Connor was his new friend, Martin, came to visit him. They are now the "fixator twins".

Update on Connor's Surgery..

Surgery was 4 1/2 hours long and finally got the call from Dr. that all went well. He is battling some nausea from anesthesia but was given Zofran to help settle his stomach. He is adjusting to his legs being numb from the epidural. He has already checked out his new bionic hip and thinks it's pretty cool. Let's hope the "coolness" of the fixator brace can last for 4 months.

(From Miss Morris-->) After talking to Allison, she said the hardest thing was having Connor be awake- we wished he would just pass out so he wouldn't have to feel the "uncomfortableness" even though he was numb from the waist down. She called me around 9:30 last night after she got him settled in for the night. 
Even though she had the day she had- she called me! I told her she was crazy (even though I do love her) and to go get some sleep. We should get her a cape because she's a Superwoman kind of a mom. :)

This morning... by Allison

The journey begins with his sweet smile still on his face.  He was more than ready to get started today. Just amazed at his bravery. Scott and I were able to be with him in pre-op. Then, I was able to enter the OR with him and his team of Dr.'s, nurses etc. With the help of some good "relaxation" meds, Connor was being quite the character and entertaining everyone. Once he was put under, I was escorted to the waiting room to meet Scott. That was a tough mommy moment for me but I got through it.

Just got a call (noon) from anesthesiologist that they are half way through surgery. Connor was doing well. In the mean time, Scott and I attended a class on 'How to care for the Fixator'. That helped to distract us for a bit. So thankful Scott can be with me during this time. Also, thanks for the continued prayers. I will update later after Connor is comfortable.

'Twas the Night Before Surgery...by Allison

Connor seems calm, cool and collect. He even met a friend with Perthes who had surgery 2 weeks ago....instant friends. When talking about his new friend to me, he said, "Martin, is the kind of friend I will never forget." 
Today and tonight we spent time getting settled before the big day at the Hackerman-Patz House

His surgery is schedule for 10am *tomorrow- Tuesday. Please keep our whole family/community/friends in your prayers.

I met a new friend too, Martin's mom, Anne and am feeling blessed to have met her. She has been very open about their experience and helped ease some of my anxiety of surgery. Much love to all of you!

Ice Cream makes everything better! Again!

Ice Cream makes everything better
 
More ice cream was in order as Connor got off the bus today. 

One of our good friends and neighbors surprised Connor and friends with ice cream at the bus stop. 

Thanks, Amy!!! 

Love,

Allison 

A Note From Miss Morris

Today was so much fun! I went into Connor's classroom to introduce kidblog.org to his class. Kidblog is just like Blogger (this blog)...except its for kids. His classmates had such a great time "talking" back and forth to each other. We started with a simple post- your favorite ice cream flavor. Then we spoke about what was going on with Connor and how using Kidblog will keep all of us in touch. After that, students wrote posts and comments to Connor, wishing him well, saying they were going to miss him, etc. He answered their posts and said he was excited to hear from his friends when he was away during his surgery/post-surgery.
Connor and I had a great conversation about school and friends..we reminisced about the first time I walked into his kindergarten classroom and introduced computers. The whole conversation- I couldn't get over this huge smile on his face. I swear, his smile and face just melts my heart. Every time I see him, he is always wearing that smile. Even when Connor talked about this upcoming journey and saying how he was going to miss his classmates so much- he still carried that smile on his face.
I'm going to miss that smile but know how tough this little guy is... 
xoxo,
Miss Morris

I scream..you scream..we all scream for ice cream!

Today, Connor's class had a ice cream party for him as a way to wish him well. It was so great to see a smile on his face. His mom even came in and helped serve with Mrs. Patterson, his teacher and Miss C- their student teacher. You can tell how much Connor is loved by his school, classmates and community. His friends wrote notes of love and support and he took the time to look at each one and make to talk to many of his classmates! Tomorrow is his last day of school before his surgery. We are sending him lots of prayers and love! 

 Mrs. Patterson made a Flat Connor to sit at Connor's seat while he's away!

 A boy and his mama..

 Connor's teachers Mrs. Patterson and Miss C

Carefully reading each of his notes from classmates :)

About Connor- From Allison

As you know, Connor has been diagnosed with Perthes Hip Disorder. The results from last week's specialist appt is showing that in a few short weeks, since his last x-rays, his hip bone has deteriorated more. We, along with the specialist and his team, agreed that the best option for Connor is to have an aggressive surgery done called a Hip Distraction with an external Fixator. The surgery is scheduled for Tuesday, Oct. 8th. This surgery entails a few procedures such as an Arthorgram (injecting dye into the hip joint) will be performed. The dye coats the cartilage and allows the true shape of the cartilaginous part of the femoral head to be seen and examined under x-rays. Secondly, they will perform a Core Decompression and Injection. The Dr. gets a sample of Connor's own bone stem cells and injects them into his femoral head (hip bone) to stimulate the blood flow to the bone and allow the hip bone to regenerate itself. He will also have pins fused into his leg supported by a metal brace called an External Fixator that must be worn for 4 months. This brace will enable the hip joint to open up and allow the healing process to happen quicker. He is required to stay in Baltimore for 3 weeks, post surgery, for intensive PT. He will be out of school for 3-4 months. He will begin some school instructions at the Ronald McDonald House that he will be staying at. Once we return home, WSSD will set up Home Bound Instruction til he is able to return to school.

Connor's attitude is very postitive at this point. We are so proud of him and how he is handling it all.  In fact, he said to me last night, "Mom, let's just do this and get it over with."  (My thoughts exactly!) Our hopes, according to the research, is that Connor will be fully recovered in 12-16 months. Although, he has a tough road of recovery ahead of him, we are hopeful that in the end, he will be a healthy little guy again. We will keep you informed throughout Connor's journey. Scott and I cannot thank you enough for all the support, prayers and well wishes from friends, family and the community. Everyone has a special place in our hearts.  


Here is a link to learn more about Perthes' Disease: 
http://kidshealth.schn.health.nsw.gov.au/fact-sheets/perthes-disease

The Journey Starts

Hello everyone! My name is Stacy Morris- and I'm a friend of Connor's. I'm also his computer teacher. When I heard that Connor would be going through major surgery, I spoke to his third grade teacher and his parents about starting a blog. This blog will serve as an update for Connor's friends and family on how he's doing with his surgery. Please feel free to leave any comments for Connor and his family. 
Friday is his last day of school for a couple of months. We are going to start another blog with Connor and his classmates so they can keep in touch with him throughout this journey.