Monday, February 26, 2018

One Month Post Surgery

Today has been one month since Alex's surgery!!! It is such a great milestone to reach through this journey. As I have mentioned in my previous posts, this whole process has gone so much better than I ever imagined. Alex has been so strong, so resilient. I know he is bored and he would love to get down on the floor and roll around or crawl. He would also love to sleep on his side curled up in a ball which is probably the reason for his early morning wake ups.

I can't imagine how uncomfortable sleeping must be for him as well as sitting all day long. He switches from the wheelchair during meals and shortly after to the couch where it is a little more comfortable. Sometimes I will also lay him on his back on the floor or up in his bed just to stretch out.

This past weekend we removed his wedge and braces during the day. He began using his own wheelchair again and is just trying to adjust his body back to it's regular state. His muscles are weak and are going to need to build back up to where they used to be. He is adjusting well.

This morning I dropped him off at school. So many people were excited to see him. Alex however, looked a little lost. I know today is going to be a bit tough for him adjusting back to routine. The stimulation alone is going to tire him out. He made a frowny face and almost made me cry. This is just as hard on me as it is on him. We have been together for the past 30 days. Having to let him go back and trust those who care for him and teach him throughout the day is tough, but he has a great team and I know they will be careful.

His classmates were super excited when he came into the room. I know they all wanted to jump up and hug him, but I had asked them not to just so Alex wouldn't be overwhelmed. I could tell that was really hard for a few of them. They care for him so much and were all so worried when he had his surgery. I know what it means to them to have him back. They are all so sweet.

We have made it through Phase 1 - Recovery at home. Phase 2 began today which is transitioning back to school and Phase 3 will begin in 2 weeks when he returns to Physical Therapy. I am excited to see where Physical Therapy will take Alex. I am looking forward to seeing how and what his legs will be like once he gains some of his muscle tone back. Eventually he will return to Horseback Riding as well.

I am so proud of his strength and courage throughout this whole process. I am hoping he has a good first week back to school. Will post another update soon...

Friday, February 16, 2018

3 Weeks Post OP

It's hard to believe that we are already three weeks post op. There isn't a whole lot to report other than Alex's incisions are fully healed and we are still sitting here all day trying to keep busy with shows, music and toys. Eric even bought a couple of apps for Alex's iPad just for another option to keep him entertained.

He is still in the wedge around the clock and the leg braces only need to be on at night. Changing his diaper has been a challenge for me this week. When we got home three weeks ago, I was rolling him to his right side to change him. This week I thought I would be able to lift his legs, but that hasn't worked out as well as I thought so I am back to rolling him to his side. I am hoping that he is more comfortable when he goes back to school in 10 days.

I did load him up in the van yesterday and took him for a car ride. I needed gas, so I got that and went through the drive thru at Arbys and got us lunch. I am hoping we can take him out this weekend since the weather will be clear and not all snowy like last weekend.

The visitors keep coming and that keeps Alex and I going. We enjoy the company. Last weekend his friend Sapphire, along with her brother and Mom visited and brought us pizza. Both Grandma's have been by this week to bring food and visit as well as my friend Stephanie who came by and brought us lunch today.

We have also received two gift cards this week for dinner from friends that don't live nearby. I just can't get over all the kindness and generosity from those around us. We are very lucky to be blessed by so many wonderful friends and family!

Evan is on his second sleepover tonight with his friend Nathan and he couldn't be more excited. Rachel, thank you so much for taking him twice in the past three weeks. It means a lot to all of us that Evan is off having fun!!

Tomorrow is the start of week four of recovery. We hope it's as good as the previous three weeks.

Exchanging Valentine's Presents

Goofy Valentine
Excited to get out of the house!

Alex's Scars from his hip surgery

He is still happy despite being bored and wearing a giant wedge around the clock

Thursday, February 8, 2018

2 Week Post Op Appt

Today was Alex's first of two post op appointments with Dr. Zaltz. Let me first say that the appointment went well, Alex is healing well and this whole journey has been better than I had anticipated. He has been so incredibly strong, which has kept me strong throughout these last two weeks.

The Appointment:

He had an X-Ray of his hip today and it is healing well. He will go back in four weeks for a second X-Ray and if all is good, then he will begin Physical Therapy and be able to return to regular activities such as walking in his gait trainer, bearing weight in his stander, riding his bike at school and horseback riding.

All of his bandages have been removed. There are still steri strips on the two larger hip incisions. They will remain there until they fall off. He was submerged in the tub today for the first time since his surgery and I think he enjoyed it. :)

He is done with his medications. I actually weaned him off of the Valium about a week ago and he has only been getting the pain medication sporadically. I got the Ok to stop that all together as well and just use ibprofen if needed.

His leg braces can come off during the day now and only be worn at night. The wedge is still around the clock for another 12 days until he returns to school. Fingers crossed that he will return to school on February 26th. At that point, the wedge and braces will be worn only at night.

His sleep has been off and the Doctor says that is normal for someone who has this type of surgery. It is going to make it harder for him to adjust with going back to school. I think some of it is that he is understimulated right now. All he does is sit and play with his toys, eat and watch TV right now. There isn't a whole lot he can do. Once is is back at school having to focus on things, learn and stimulate his mind, he will be more tired and hopefully sleep better. Once he starts moving more, he will probably be worn out!

This second week has been full of delicious food and some very special visits. Mrs. Crawford, one of Alex's parapros who has worked with him for the last three years has visited twice this week. Once on Saturday and then again tonight. She misses him a lot and lives two minutes from us, so it's been nice of her to visit. His Teacher Mrs. Polasek came by last Sunday for a couple of hours and brought him his favorite popcorn, some hershey kisses and a squishy baseball. On Monday, his friend Olivia from school along with her Mom and two sisters brought us dinner and both boys gifts when they came to visit. He and Olivia have been in every grade together and are very special friends. Olivia helps Alex alot and enjoys spending time with him, so he was very happy to see her and her family.

Aunt Sharon came by yesterday during the day, Grandma Debbie and Grandma Precilla have both been by a couple of times this week and my friend Pam brought us dinner last night and visited.

Evan is on his second snow day of the week tomorrow, so it will be nice having him home to help entertain Alex. He usually does a pretty good job of that. He has been such a big help throughout this process. He has been understanding of the time Alex is demanding of us and we are doing our best to give him one on one time with each of us as well. He had his first sleepover last weekend with  hsi friends Lauren and Nathan. He really enjoyed himself and is looking forward to doing it again.

The love and support from all of our friends and family has been amazing. I know it has helped me get through the long days at home. I also get multiple texts every day with people checking in.

Thank you isn't enough, but please know how much we appreciate each and everyone of you. I will have another update next week. Until then, keep checking in, keep the prayers coming.

Friday, February 2, 2018

One Week Post Surgery

Today marks the one week mark of Alex's surgery.

We had to be at the hospital at 6:30am last Friday and surgery was scheduled for 8:00am. At 7:57am, the surgical team came in to wheel Alex back to the OR. I stayed strong for him until they turned his bed to take him out the door. When he could no longer see me, I let the tears flow for a few minutes just to get them out. I needed that release of emotion to be able to wait patiently for the next 2.5 hours.

Notes from Evan to Alex the night before surgery

Watching Mickey

Mommy and Alex watching Mickey

Frankie is into the OR with Alex
These 2....

Almost Time!

Alex and Frankie off to the OR

 At 8:40am, they informed us that surgery had begun and everything was going well. At 10:25am, I went to the desk for an update since it had been almost 2 hours without an update. The said that they were finishing up, all went well according to Dr. Zaltz and he would be out shortly to speak with us. Within 10 minutes he was standing in front of us telling us how pleased he was with the surgery and that they were waiting for Alex to wake up so we could go see him. The surgery itself only took about 2 hours.

Eric and I were brought back to Recovery before Alex was fully awake. That was a little emotional for me. He was crying in his sleep while he was waking up because he was in pain. :( It took a bit, but he finally woke up and he was taken to a room upstairs on the Children's Floor. We somehow lucked out and got a private room which was SO nice.


Friday he was really groggy and out of it for most of the day. He started to eat little by little and was drinking a ton of fluid and came off of his IV that night. Sleeping was a bit rough that night because we were up every 2-3 hours for medication and Satursday he seemed really tired. (It was a combination of the medicine and lack of sleep the night before) Plus he had a few visitors that day as well. Eric stayed with him overnight Saturday night, and even though we were scheduled to leave on Sunday, I didn't think it would be as early as it was. Eric called me around 9 to say the Doctor had given the all clear to go home. We were out of there by noon!

Frankie had surgery too!
Friday Night

Face timing with Evan 

Therapy Dog Murphy stopped by for a visit on Saturday afternoon

What he really looked like
We managed to get a smile

His incision areas were sensitive the first couple of days being home. He has leg braces on both legs and a big foam wedge between his legs. So far we have been able to carry him up and down the stairs that way. He rotates from sitting in the wheelchair they sent him home in, to sitting up stretched out on the couch or the little make shift bed we made for him on the floor to use during the day.

I have been slowly decreasing his pain medicine and havent used the Valium much at all in the past 2 days. I was very anxious leading up to his surgery and recovery not knowing what to expect. So far, he is doing very well and I am pleased with how things have gone this week. The biggest thing is keeping him comfortable and he gets bored easily.

We have been fotunate to have had some visitors to the house this week which has kept us both sane. In addition to visitors, my friend Amanda set us up with Food Tidings and we have had dinners brought to the house this week by our friends and family! It has been amazing not only to see everyone but to feel their love and generosity. I have never been in a position to have to accept help but it has really prevented a lot of stress not having to cook or prepare meals.

Evan was happy to see Alex on Sunday since he couldn't visit at the hospital. They talked via facetime on Friday night and Saturday but it's not the same as being in person.


Evan spent the weekend with his Aunt Tappy. She drove all the way from Georgia just to spend the weekend with him. He didn't have school on Friday, so they spent some time at the mall and went out to lunch, Saturday they went swimming all day at Outdoor Adventures Campground at the indoor pool and hot tub. Sunday they went to Church and visited Tappy's Mother in Law for a bit before he came home to see Alex. I think he enjoyed every minute with his Aunt. I know we all miss her already!

So that is about it for week one. Things are going well, Alex's pain is under control and we are getting by better than I thought. Next Thirsday is his Post Op appointment so I should have a good update to share on Friday. Until then, keep Alex and his recovery in your thoughts and prayers.

At home this week