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

Thursday, January 25, 2018

Just Another Stepping Stone

Emotions are running high today for me. Tomorrow is the big day for Alex. The hospital will be calling this afternoon with his arrival time and surgery time. I spoke with a nurse in the anesthesiologist department to go over his health history etc. yesterday. She explained to me that Eric and I can be with Alex up until the moment they wheel him off to the operating room. I had tears in my eyes as she was telling me this because that moment is going to be really hard for me. I have to be strong for him up until that moment then I feel like I can release my emotions for a bit until I see him again. The surgery should be 1.5-2 hours with 45 min in recovery before we are able to see him. It is going to feel like a lifetime for me. I just pray that everything goes as planned.

This week has been busy with preparation for our house guest, getting things ready for his surgery as well as making sure Evan is all set.

We have had to make room on our main floor so that he has enough room to sit in the wheelchair they are going to be sending him home in. He will be in that chair all day for a month. I want to be sure he is comfortable. I have had to wash bedding to make sure it is good and clean for him after his showers which he began last night. He has to be showered in an anti-bacterial soap for three days prior to the surgery to reduce his chance for infection near the incision sites.

Laundry piles up in our house quickly, so I am trying to get caught up on that as much as I can before tomorrow. I don't want to come home to 8 loads of laundry on Monday. :)

As I mentioned, my sister in law Tappy is coming up from Georgia to stay for the weekend with Evan. We are all very excited to have her here but no one is more excited than Evan. I am really happy that he will have a full three days with her to have ample one on one time. He is looking forward to it and I know he will thoroughly enjoy his time with her.

Yesterday I volunteered in the classroom like I do every Wednesday. Mrs. Bowers handed me a manila envelope full of cards that the kids made for Alex with a strict note for him to NOT open until after his surgery on Friday. I held back tears because I know how special each and every one of those cards are going to be and I cannot wait for Alex to see them. His friends care about him so much and  they were all telling me how much they are going to miss him. I am so happy he has so many friends who care about him, help him daily and love him.

I know I care for Alex daily and it is different than caring for a typical 7 year old like Evan. Alex depends on me and he will have me as his full time care giver for the next 4-6 weeks. I am just worried that I will cause him pain while changing his diaper or trying to carry him upstairs for bedtime. I am worried that because he is non-verbal he cannot tell me what is going on, what hurts, why he is uncomfortable etc. I am worried that he won't be comfortable sleeping. I know these are all valid reasons to be worried, but I just want people to understand where I am coming from I guess.

This is all for now. Eric and I will keep everyone posted tomorrow through Facebook and Text message. Please keep us all (but especially Alex) in your thoughts and prayers tomorrow and in the coming weeks as he heals. This is just another stepping stone in our journey.

Thursday, January 18, 2018

Pre-Op Appt

Well, we are 8 days away from Alex's surgery.

Last week we had his pre op appointment with Dr. Zaltz where he went over exactly what he would be doing, how long the surgery should take and he took another X-Ray. He wanted to be sure that Alex's right hip still looked good and that it wouldn't have to be operated on.
Good News!! No surgery needed on his right hip! So, his left hip will be done as well as the Adductor lengthening and he said he would assess his Hamstrings to see if they need to be lengthened or not.

We won't have a surgery time until Thursday (the day before) and he should only be in the hospital for two nights. It's unfortunate that Evan will not be able to come to the hospital with us the morning of or to visit because of the hospital's recent ban due to the flu virus. Our local hospitals are not allowing children under 13 to visit unless it is a life or death situation. We promised him we would face time him once Alex is in recovery and awake.

Eric's sister is coming up from Georgia to stay with Evan for the weekend since we will be in and out. I am super excited for Evan because he has been talking about her quite a bit lately and has no idea that she is coming. It will be so good for him to have the one on one time with her.

Now we just wait....and we try to remain strong.

Thursday, January 4, 2018

Our Biggest Challenge Thus Far

Back in July we traveled to Shriner's Hospital of Chicago for our annual visit with Dr. Smith, Alex's Orthopedic Surgeon. This was our 4th visit with him in three years. He has been monitoring Alex's hips over the years and he finally told us that it was time. Time for surgery. Three words we had been dreading and not wanting to hear but it is our reality, Alex's reality living with Spastic Cerebral Palsy.

I actually consider Alex lucky in a sense. Many children with his disability have to have surgery much sooner. So, for Alex to be 7 and just now being told he has to have his hips operated on, I will say is somewhat of a blessing.

In July, Dr. Smith told us he recommended it be done within six months - also a bit of a shock to us. So, once we returned home from Chicago, I called and made an appointment with an Orthopedic Dr. here in Michigan. Eric and I really like Dr. Smith and he does AMAZING work, but that kind of surgery is invasive, painful and uncomfortable. I couldn't see us trying to transport Alex home from Chicago being in the car for 5+ hours.

On October 2, 2017 we met with Dr. Zaltz who works out of Royal Oak Beaumont. He was recommended to us by Dr. Smith and it turns out they are very close friends. Eric and I both like Dr. Zaltz a lot and agreed to have him perform the surgery. He was very personable and answered all of our questions. He agreed at that time that Alex does need the surgery, but only on his left hip. He would also do a muscle lengthening procedure on his Hamstrings and Abductor muscles at the same time. Doing this procedure along with the Hip Reconstruction should do wonders for Alex. His muscles would not be as tight therefore relieving some of the pressure he is putting on his hips. Right now his left hip is close to 50% out from dislocating.

We are hopeful that this surgery will be a success and because he is 7, there is a good chance he will not have to have the surgery again on his hips. Depending on how fast he grows over these next few years, the muscle lengthening may have to be repeated, but we hope not.

He will be in the hospital for 2-3 days, then released to go home to be cared for by us for 4-6 weeks depending on how well he heals. He will have some form of braces and or casts on portions of his legs to keep him from bending them and moving them when he shouldn't. He will have a plate and screws in his hips for 6-9 months and will need therapy 2-3 times a week once the Doctor clears him to do so which is around the 4-5 week mark.

I am anxious and scared for him and me. I will be his primary caregiver and I just hope that I can do what I need to do to help him and keep him comfortable. No parent wants to see their child in pain or have to hand him over to Doctors and Nurses and give them the control. This is going to be our biggest challenge thus far and I hope when it's over, it will all be worth it. I hope that he heals well and that the tightness and pain are relieved and that overall it will allow him to get around better in his walker and crawling on the floor.

As much as I am dreading January 26, 2018, it is cold and snowy out and by the time he is done healing, spring will be around the corner. We will be ready to be outside enjoying the warm sunshine!

Please keep us all in your thoughts as we embark on this rocky adventure, but mostly think of Alex. He needs his friends and family's support to keep that smile (that lights up a room) on his face and in our hearts.

I will post more as we get closer to surgery. Until then...

Tuesday, January 2, 2018

December Adventures

December is always a busy month full of many Holiday activities. Below is a recap of our adventures in December including Christmas. Enjoy!

Ortonville Christmas Parade - December 2, 2017

We attended the Christmas Parade in our Home Town on December 2nd. The boys got to meet Santa and Mrs. Claus and one of the Reindeer! It was a fun little event!

Santa House - December 9, 2017

We took our annual trip up to Midland to The Santa House with Rachel, Lauren, Nathan and her parents. This year her Uncle Paul joined us as well as Eric. We had lunch at Pizza Sam's like always. It is such a nice tradition with friends who are like family.

Baking Cookies, Gingerbread House, Kids Christmas Party

We baked Christmas cookies on December 16th with My Mom like we do every year. It is one of my most treasured traditions. Evan and I made a gingerbread house together this year, and on December 21st the boys had their Christmas Party at school which was full of lots of fun! 

Christmas with the Family

We celebrated Christmas with Eric's Family on the 23rd, My Extended Family on the 24th and My Immediate Family on Christmas Day. Three days of presents was like Heaven to my boys.
Our 18th Christmas Together

Eric's Brother Ed, his wife Sharon, Sierra and Benjamin


Eric with his parents and our boys

With my Sis Kristy and Curtis

My Dad and Aunt Sue

The boys with cousins Alaina, Brayden and Layla

Santa Came!
Happy Boys!

Our Backyard on Christmas Morning!

Merry Christmas!

We got a white Christmas!

Dad and I

Evan, Mom and I

Christmas Chaos with 4 boys

Kristy and her boys
Laken, Sailor, Evan and Alex

Chuck E. Cheese - December 28, 2017

We went to Chuck E. Cheese with Rhiannon, Blake and Casey to use all the boys Gift Cards they got for their Birthdays. They had a blast - if you couldn't tell from the pictures!

New Years Eve

Rachel, Lauren and Nathan came over for a few hours to celebrate New Years. We had lots of yummy food and snacks and we counted down at 9pm with our sparkling grape juice. What's a NYE Party without Pie Face Showdown?? It was fun and we are so thankful to have such great friends!

 Cheers to an amazing 2018!!
Happy New Year!!