Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

Recovery

Getting Tyler home was so nice. The day we got him home, we were still figuring things out and Grandpa had to leave to go home to our grandma. We were saying our prayers for the night with Tyler and he was asking to please bless our "Creaky Grandma who is awesome and old." We all busted up a bit. Poor lady. She really does feel old.

Grandpa was sad to go, but Grayson was pretty sad too. He had Grandpa to himself a lot. Which we are SOOO thankful for. Home was where Tyler finally ate some food. We were worried about his food, but he did so much better at home.

The only big problem we faced at the beginning was some constipation issue with Tyler. So we mixed a lovely drink of Poo Pepper. Fortunately for me, Tyler and Grayson both consumed a large portion of mixed drink. Finally, after a trip to the pediatrician's in which Dr. Auxier just giggled and laughed like a school girl, and telling me good luck and to double the dose of Poo Pepper. He then laughed, brought in a LARGE bag full of chuck's pads and said I would need these and don't forget to double diaper.  HAHA to him. BOOOO

Learning to get around the house and the park and the car and the store is a HUGE chore. He doesn't want to do anything but play on the iPad. He is a happy camper to spend as much money as possible in the app store.

The first 2 days were hard on him and he kept trying to get up. He fell off his bed a few times and the couch as he tried to stand up. But there is nothing there to hold him up. He is a fast learner and a fish out of water :) 

Grayson was just chilling waiting for me to come get the stink who got off his bed on his own .



And to sit in a big chair to get him off his bum. But he was a trooper. But he was still stubborn and would try and do what he wanted to do.

Getting out the door is almost a laughing on the floor joke. But we have done it a few time. It gets a bit easier but the whole wheel chair thing doesn't. 

We had our Speech and OT start back up and we need to take a bit of time and get the PT back here to work on our core strength. He has no core muscles and if we want him to have some now would  the time. 

So we are 2 weeks at home with recovery..... and we are still working out the kinks. 

But welcome home buddy! 

Fun Friday- With Decubitus Ulcers on top

We try to make every Friday something that Tyler and Grayson can work toward. Usually it is a good activity like Bowling or swimming or some place or thing they have worked towards doing as a family. If he has days at school where he won't do anything or he yells ( turns out he yelled at his teacher and told her to shut up last week at school haha!) he doesn't get to do his fun Friday activity.

This last Friday we thought we would go swimming at a heated pool. He had to work for it. He almost lost it.... twice. And had I seen the paper that he yelled at his art teacher I would have said " Um no!!" but I didn't.

So after Shriner's Hospital we headed to the pool. We also picked the COLDEST day of the week to go but we had a good time. We took our neighbor friend, Sawyer. Grayson adores Sawyer and Tyler is a fish. He just goes and goes and does well in taking care of himself on the slides.

My sweet Grayson who just wanted to run and scream in his Paw Patrol Pants. 

Tyler and Sawyer. Ty was climbing back UP to the little slide.

Tyler soon decided that the regular slides were not enough for him so he asked to go down the big twisty slides. So him and his worker, Ciera, climbed up to the top 5 times and and he went down and LOVED it! The water was not overly warm but it was heated. But it was only 77 degrees outside. For us Arizona people, that is COLD!! We were super duper cold. Once Ty got cold his foot instantly turned in and he started walking on the top of it again. He was dragging it and just walking wrong. I carried him a bit, and Ciera carried him a bit. 

A side note about Ciera-


Ciara joined our little family over a year ago. We made a schedule with her that worked for all of us. And for some reason we have embraced having her here and we feed her for dinner and we do our night routine after we all have had dinner. So we sit as a family with her. She prayers with the boys, she eats the food. She helps with the boys and she is fabulous with Tyler. She climbed into the pool with him and cradled him around and just talked to him and did all that he wanted to do.

I feel truly overly blessed to have her working with our family. In fact, we have always been blessed. The last 2, Kelsey and Brynne we have LOVED them as well. Kelsey was just in a place she needed no  extra stress or hours and Brynne needed better and different hours. But for Ciera we work for her. We have hired some help for Ciera this summer but no one can take care of Tyler like Ciera can .

After we got home from the pool. Ty said that his foot hurt, but we got dinner going and did our dinner thing and didn't think much of it

Mother's day weekend came and Dallas asked me if I had seen his foot. I said I had not. I didn't look at it till Sunday and I freaked OUT!! His entire foot is open and back up to worse than what it was 2  weeks ago.

So that brings us to the Pressure sore.

When Tyler's feet got cold, he started dragging his foot and he peeled off a good chunk of his foot. So back to the podiatrist we went. we was really worried about it. But we went in and they opted to fix it with a laser treatment 4 times in the next ten days to get it to close faster. We do Antibiotic ointment and some bandages, after school we leave it open air so that it can harden up. His poor feet are truly the only thing he complains about.

This is the new sore. The Dry patch and the "spot" was the big one from yesterday's post!

So, this week we are praying that the wound heals fast for Tyler's foot. That we can do our best to keep it small enough that our surgery won't be postponed. 

I think we will keep our Fun Friday to bowling!

Our Wish Makers

So this is not to be confused with our wish GRANTERS. Our Wish makers were the ones that were financially supporting our wish. In the make a wish world there is a lot of secret to who pays and funds wishes. Unless the “funder” wants to be known it is usually left anonymous. In fact, I have only heard of a handful that actually KNOW.

Up until we got BACK from our trip I had NO idea. I wish I had known so that we could properly thank them in private. But there is no way, other than just expressing how amazing our trip was. During the nursing, vomit portion of our day I got a call from Jenny at Make a wish  and asked if we would be willing to meet our wish makers.

I said YES!! Is there really any way to properly thank someone for sending your family to a once in a lifetime experience for your kiddo who has been through WAY to much in his short years. But that for ONE WEEK we forgot that it was hard. Because it was MAGICAL instead. So of course we wanted to know.

She gave me the address of where we needed to be and at what time the next day. Tuesday ( luckily no one was sick at the moment!) came and we went to meet them. We were SHOCKED to see that it was a school. And not just a small school but a ELEMENTARY.

Why is this so shocking you ask? Well this small school raised enough money for not 1 but 3 wishes to be granted this year. They have raised over 34k in the last 3 years for the make a wish foundation. They are a HUGE blessing to the kids who get to go on a trip.

Ty was able to stand up with me while we talked about our trip. But they already knew all about Tyler ( or as much as they could know from Make a wish) and his picture was in their school. So I got to tell them about how COOL Tyler is. And how he has had to go through some pretty mean stuff in order to be as cool as he is. And that even though he acts, talks and walks different he LOVES to be a pirate, loves Mickey Mouse and especially loves the beach.

We told them thank you for sending us on the trip. Thanked them for being so generous and also for taking the time to get to know us and that we would be watching their school and if we saw something we could help or donate to we would!!

Overall the process of our wish has been amazing. In all humility, I can’t thank everyone enough. Not just those in the make a wish process but all the way down to my extended family. After I gave birth to Tyler, I had 2 of my Aunts come to my room. Neither of them have realized the impact seeing them made. That same family usually gives service for a family in need and as we got closer we realized it was us they were helping. They are always there for us. The support that we get is amazing.

I am especially thankful for our loads of docs who we love. We love them so much and they are always a call away when I am in a panic but also in need. Thank you for always being there doc!

And a huge thank you to Tyler. Thank you for always being so brave!

Surgery Time

After a long sleep battle with Tyler we went to a sleep doctor. We needed refills on his medicine and in order to get them we needed to see a doc that would prescribe them. The medicine we give him is kind of old school AND they are kind of strong. Most kids only get these when they are heading into surgery. Ty gets them every night.

The result of the test shows that Tyler has some sleep apnea. His oxygen stats drop into the low 80's and it made our doctor a little worried. Because kids with Cerebral palsy can have such strange muscle tone she felt that it was in his best interest to see an ENT.

Off we went to the ENT who suggested that they come out. Then a few weeks later we broke our nose and then a few days later we bumped it pretty bad. So surgery was scheduled. Last week it was rescheduled but the day has finally arrived.

Wednesday Tyler is scheduled to get his tonsils out. To make his life a little easier we are also doing phenol shots and casting the same time. Both docs are working together to help us not have to put Tyler under any more than we have to.

Up until Tuesday night and into the early morning I will be fine. It is when they take him away from me crying and saying momma that I just lose it.

We are lucky enough to have an early time in the OR so we don't have to fight him on the food and drink thing. We will have to fight him after.

Every time we plan to put him under or we do a surgery that isn't Emergency needed I worry that i have made the best choice for him. When he is DYING because his brain is swelling and his heart rate is dropping, I KNOW we need to do it NOW. But this half fills like it is just an elective surgery so I am a little more nervous.

So if you don't see us com up for air... leave us some words of wisdom....