The rest of the week

Our amazingly busy Wednesday made our Thursday kind of a beast. Ty stayed at his Grandma's house until we were on our way home from the hospital. He pretty much didn't stop crying all night. He woke up exhausted and very very sad and very very tired. But he doesn't give up.

I happily sent him on the bus while he cried over not having the right movie to take to school. (Which he doesn't EVER take) I ran inside and called his teacher and let her know that he was really sad and kinda being naughty so if he is REALLY bad call me.

My OB called soon after and told me it was a good idea to come and see him. As soon as I hung up my mom called and said that they were on their way. They showed up with an amazing box of Food Ranch Donuts. I went and picked up Tyler and they went and got the "kids" while Ty had a small nap.

I left for the OB's soon after. Everything looked fine and Grayson sounds great. Progestrone was stabbed in my bum and everything else looked great. We follow up Tuesday with the peri and another appointment. I was told to have a resting weekend but otherwise I was ok to take my time and relax a little.

We played Thursday and got a call for an appointment at Shriners for orthotics on Friday. My dad came with us. Ty was in a MUCH better mood but was still NOT his self. Poor kid just couldn't get enough sleep. My dad helped a TON. I didn't even think to take pictures.

For orthotics they put a cast on till it dries then cuts it off. It isn't painful minus the stretching his legs into a good stretch but it gets old after awhile. His appointments are not fun. They are now usually pretty hurtful and he has a lot of them. Once they were off he seemed to cheer up.

The best part of the day for me was going up to not nice therapist and getting A BIKE!!! It isn't brand new and it isn't for keeps but Ty gets to practice with it. He does really well and can do it. Especially if people are out. He even drove himself over to the neighbors to go play.

The best part for him was playing with the basketball. It was so hard to get him to give it up. He loves it and "claps and cheers" for everyone who does it. We left and went to go pick up the kids.

Then the Easter festivites began

He is my Brave Hero

I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son

The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.

The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.

Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.


When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.

As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.

They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.

We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.


When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.

So the verdict on the feet and why we are doing this.

1. The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
   
2. Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
3. Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
   

Tyler is current unable to walk, and crawling is hard. He basically can't get around. Mom is his way of transportation and dad is his way of getting loves. It would be so helpful if family and friends would come buy, knowing he might be mean and unfriendly but show the support. He will know you are there. And from the mom stand point it shows you care.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.

And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.

I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes

The results are in

Our sleep study results and follow up was this past week. I have decided that I really like this doc a lot. She was very honest. But first, a little of the first of the week.

On Sunday Dallas woke up with a horrible sore throat. I decided to take Tyler out of the house for a few hours and let Dallas sleep and then we took him to the instacare AGAIN. I was really hoping that it was "nothing" and he was just feeling like crap and feeling a little stressed. But sure enough the quick strep test was positive AGAIN. I was so so mad. We just got done with Antibiotics from a week or so ago. And here we were again.

So we assumed that there was a carrier somewhere. Monday Ty and I went Christmas shopping and headed home. Got a text message from Aunt Sheena that she was not feeling well and she was heading to the doc. A hour later a text that she was positive for strep.

We learned that strep has a carrier and someone with no tonsils can't carry but can get strep. I am the ONLY person in the house that has no tonsils so we assumed it was Tyler the toot.

Tuesday we talked to ped, got scheduled for his last H1n1 shot and we thought we would test him to see if it was him. He isn't or wasn't sick and we waited for the rapid strep test. Guess who was positive? Yep toot face himself.

2 weeks of antibiotics to see if we can't kill off the germ and off we went. For the first time in his LIFE he will actually take it without throwing up. Did you know they can flavor augmentin strawberry?

Its seems his appetite has returned so who knows maybe he was not feeling well. But he has been much better.

His sleep study results came back. And the honest doc said, he doesn't' sleep a lot. I am sorry there isn't anything we can do.

Ok.. that was the gist of it.. The details:

Ty has awesome REM sleep the first 3rd of the night. He falls asleep great because of his sedation meds. He enters into deep sleep pretty well. Then comes his arousal. Around 3 am he starts arousing from periodic limb movment ( about 5 an hour) and ( get this) obstructive sleep apnea.( he wakes up about 8 times an hour with apnea) At first she thought it was his tonsils but she was not convinced after seeing the rest of the results. He wakes up when he can't breathe. He then comes looking for mom. She thinks that his air way is floppy. That taking out his tonsils will be like taking out part of the dry wall. She really feels like it would be a bad idea. She would really like him off his sleeping meds but at the same time anything she gives him will be metabolized in his liver. He has to have meds or he would be up all night.

He gets generally around 440 minutes of sleep that is about 7 hours. A kid his age should be sleeping between 10-12 hours to help him grow and develop. She is glad we have been putting him in our bed because apparently hearing someone else breathe can keep a kid alive.

I was horrified to see that I was sedating my child and he can't breathe. Here we are sedating and suppressing his breathing and yet he still doesn't sleep. I am at a loss but thankful he has been safe.

So we are getting an ENT consult, not for sure taking out his tonsils but getting them looked at. Seeing if we can make him safer. We are letting him out grow his dose and see if there is anything else we can do. We are going to be checking with his neurosurgeon about a ridge on his head that makes me a little nervous and make sure that his little cute head is still growing. I will be devastated if we are having more issues with his head growth.

Next week ( OK Wednesday) we go in for his phenol shots and serial casting. It was pushed back a day. My tummy is in knots till we get it done. Lots of prayers for Bubba!!

Tyler getting his AFO's

Wednesday we had our appointment in Phoenix for Ty's AFO's. We took off fairly early in the day so we could run some errands. ( Ok really we went to exchange the Apple Tv that Dallas got for his birthday.... EARLY) We ate lunch and headed into Phoenix.

We got there right on time and met with the owner of the office. The office is called The orthotic specialists. He was very nice and he explained what we needed to do and watched Ty walk and crawl. Then came the hard part... The casting. Or so I thought. I brought Dallas along with me. He was so helpful and Ty LOVES his dad. He loves his dad's iPhone to. He put on a movie for him and he did so well. He didn't cry while they put them on and fussed just a tiny bit. He did so well.

We decided to do regular white ones and not decorated ones. We will get them in a week and a half.

Here are the pictures!!!


The cast is on and he is content watching Baby Einstein on his dads IPhone.



While casting his foot needed to be at a 90 degree angle. Usually isn't a problem unless he is REALLY angry or REALLY happy!!



Cutting it off... He was not sure about the scissors at all!



The end result. They will make the molds from these casts. Cool huh!



And yes... my kid is a junkie. I don't mind. It helps on those really long waiting days.


The good news is they said with the AFO's that Ty will be much more stable and his tendon should stretch quickly. They also don't think he will be in them long. We will start out only at night and move to time in the day as needed.

A special thank you to those who donate to Shriner's. If you read my blog you know my LOVE for these people. I don't think they know of their impact.

And a special thank you to Dallas. I really needed his support. Getting braces for Tyler has been really hard for me. I can't imagine doing it without him. I was so glad that he was able to come. I had a wonderful time and I am so glad that he is my husband and Ty's dad. What a great pair!!