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!!