Super Nash: May 2014

This post is a little behind but we have been SUPER BUSY!!

We were getting ready for our summer in Florida by packing, packing and more packing!! The girls at my salon. MOXIE. arranged a benefit for us in the form of a garage sale. My friend and co-worker, Racquel Pfeiler, came up with the idea and started advertising. We had donations coming from everywhere!! It was perfect timing because everyone was spring cleaning :) With the help of all the girls at the salon we had a very successful fundraiser!! Over $2,220! We could not be more excited and thankful to everyone who donated items, help set up/take down and came to shop.

I know I say this all the time but...We have the best people in our lives!! It is the most wonderful feeling in the world an it was the perfect "send-off" for our family. Thank you all!!

The morning we left was Sunday, May 4th, 2014. We were all ready to go we just had to get the kids in the car and realized Hattie had a fever. She was not a happy girl. After a dose of ibuprofen, she made it through the flights. We arrived in sunny, beautiful Florida that afternoon. We went to the apartment we were staying at and settled in. The next day we had our appointment with Dr. Paley at 9am. We got x-rays and met with him after. He (like always) had a team of doctors following him. He looked at the x-rays, explained what he was going to do and we were off!!

The rest of the day was spent at the ZOO!! The kids had a BLAST! The only complaint was when we left Nash said "Mom, we forgot the animals"! He was under the impression they got to come home with us. Crazy kid :)

The next day Hattie woke up with a fever again and a nasty cough. That is not good for her or her brother!! We were pretty freaked out but she seemed to feel better throughout the day. The Kids and I went on a walk around the neighborhood that day and we came across a Puppy Store so we went to pet the puppies. The kids LOVED it. However, Nash Cried and Cried after we left because he wanted a puppy. They were so cute but we are not in the market for a dog right now. Ever since then he wishes for a puppy every time he throws a penny in a fountain...And there are a lot of fountains around here!

The next day was Hattie's 2nd birthday!! She still wasn't feeling very well and coughing even more. I found an urgent care and we spent 3 1/2 hours there. Hattie cried and screamed! She was not having it. It turns out that she had an ear infection (still), bronchitis and upper respiratory infection. We started her on antibiotics and nebulizer treatments that day. Needless to say, we stayed home that night and we will never forget her 2nd birthday! She is the sweetest, funniest and sassiest little girl and we just love her to pieces. Our lives wouldn't be the same without her!! She's such a JOY in our world :))

Thursday we had pre-op blood work for Nash. He was amazing! (I will be describing him as this A LOT because he absolutely is!) He watched the nurses take his blood and he told me it didn't even hurt. Then we had to be back at the hospital later because Nash was a part of Dr. Paley's Clinic and presentation he was holding for the other surgeons there. He had a few cases he was talking about that day but he had Nash's X-rays on power point and they watched Nash walk so they could see how well he has healed from his super hip surgery! It was pretty cool. The surgeons watched his surgery the next day as well.

After that we went to the beach and the kids LOVED it there too!! Nash played in the water for a long time. Hattie played in the sand and she ate a little too! We saw some boys at the beach that were surfing. It was pretty cool! Hattie really enjoyed watching them. :)

The next morning we had to be at the hospital bright and early...6am! Everyone was in good spirits. The kids felt good and we were ready for surgery. This was going to be significantly shorter than his hip surgery. I walked my sweet boy to the Operating Room and kissed his cheek as they put him to sleep. There were lots of tears but I knew he was in good hands.

At 12:15pm Dr. Paley walked into the waiting room and said surgery went very well!! He removed the hardware from the previous hip surgery and installed the fixator which included 9 pins into the bone. He also injected Botox into the thigh muscle so its easier for Nash to stretch in therapy. He was very happy with how it went so we felt much better. A little over an hour later I got to see my sweet baby in the recovery room. He was groggy but good. We didn't have a room yet so I just laid there and snuggled with him for an hour or so. Daddy was with Hattie and she was keeping him busy chasing her around like a crazy 2 year old!

When we got our room we got situated and little miss Hattie couldn't keep her hands off of the iv and she just wanted to climb everything. That wasn't going to work so Chris took her back home and I stayed with Nash. He got sick after drinking some apple juice so we had to wait a while to drink or eat anything else. He was on Morphine and it made him very irritable. That night was a little rough but the pain was pretty controlled. The only thing that happened was that he wet through his sheets and his dressings around the pin sites. The nurse had to change everything at about 3am! The funny thing about hospitals is...The night nurses are WORKING so even if you are sleeping, they'll flip the lights on and do what they need to do! I have a love/hate relationship with that. I really do appreciate the nurses...they have a tough job sometimes!! It seems like there is never a dull moment around there!

The next day Nash was a new kid. He felt much better but he wasn't happy about his "leg stretcher" He said "It's heavy! Take it off"! Poor guy. It's hard to explain this whole process to a 3 year old. He kept telling me that his leg was long enough and he didn't want it longer. That's about enough to break his parents' hearts :( We know we are doing this for him and his future but it is not anything I would wish on anyone to have to go through.

Nash stayed in the hospital one more night and continued to do great! Chris stayed with him the second night and he called in the morning and said we were being DISCHARGED!! It just happened to be Sunday and Mother's Day. What a great gift...I could snuggle my sweet boy again without iv's and cords attached to him!! We got to the apartment we were staying at and Chris's parents had arrived with our van. We had a good night and were very excited to have the extra help!

The next day was the busiest day we've had so far. It was our first Physical Therapy appointment and He did AMAZING! The PT session was an hour long and it flew by. After that we had to go see Tony...He's the guy who teaches"pin care". He unwrapped the gauze and started cleaning Nash's pins. Nash was screaming. I've seen people with fixators on and pins in their legs a lot around here, however, It is a completely different feeling when you see them in your own child. Especially when they are in pain. I actually had to leave the room to cry and catch my breath. Everyone says it gets easier...I'm just waiting for that to happen.

After we left the hospital that day, we went to the apartment we were staying at. We had to pack our things, clean, and move to the condo we are staying at for the rest of the summer. We arrived at the new place around 7pm, unpacked, and got the kids to bed late. We were exhausted. The next day we had to be at therapy at 8am. That is way too early for us! Nash did not want anything to do with it. After therapy we had to go see Tony again.... Nash was NOT happy!! Tony cleaned the pins and we were finally done. We relaxed most of the day and finished unpacking. The kids made friends with these weird-looking ducks that hang around the neighborhood. They come right up to us and we feed them little pieces of bread. The kids absolutely love it and I think the ducks do too :)

Therapy on Wednesday was the best one so far. Nash stood on his own and even walked with the walker! That was amazing because it had only been 5 days since surgery. They did some electric stimulation to his muscle with heat packs as well. It's supposed to stimulate the muscle and make it stronger. Nash didn't seem to mind at all! He said it tickled. When we got home that day, he actually stood up from his bean bag chair and started walking on his own!! We were in shock! He was pretty wobbly but it was AMAZING to see him walking again.

We also started turning his screw on Wednesday. It actually separates the bone and new bone grows in between. That's how you "lengthen" a bone. They call it "distracting" the bone. So every day we turn the screw 4 times. That equals one full turn and it creates 1mm of bone growth. So you basically get 1cm every 10 days and 8cm in 80 days! (that's about 3 1/2 inches) That is our goal... pending any complications. Nash decided HE wants to be the one to turn the screw. Apparently it doesn't hurt so whatever makes him happy...right?!

We had a really fun night that night. We went to the Loggerhead Marine Center in Juno Beach, FL. It's a rehab center for turtles and they have other sea creatures as well. Nash and Hattie really liked the turtle named "Reef". He was huge! He had been hit by a boat propeller and it cracked his shell and paralyzed his back legs. There were screws and other hardware on his shell to help it grow correctly...just like Nash has on his leg! Nash was so amazed and he just sat and watched him for a long time. I'm sure we will be going back to visit him quite often :)

The next day at therapy, Nash WALKED in on his own!! It was AWESOME! I think the therapist was even shocked. He had another great session and he really likes the therapist...Lisa. She's really good with him and he responds to her well. I'm so happy with everything/everyone so far. We've met some great families already and got to see some families we've met before! Our friend, Jake, who was in the hospital room next to us when Nash had his super hip surgery 2 years ago, is here with his family getting his first lengthening this summer, too! It's so nice to see familiar faces and have friends here :)

I've said it before and I'll say it again...We have the best people in our lives. We have so much love and support from friends and family that it makes this time in our lives so much easier. Please keep our little Super Nash in your prayers on the good days and the hard ones, too. Pray for patience and strength for Chris and I as we get through those days as well. We are so lucky to be able to spend this summer together as a Family. We will absolutely cherish every moment!