Busy Busy

Hello all, I know it has been a while since my last post, but it has been a crazy month. So just a quick catch up. In the last month we have had a dog pull a catheter out, lots of mucus, and lots of recovery. Tyler has done wonderful on his road to recovery. He went in on March 1st to get the last catheter out, but the doc wanted to keep it in for an extra week. Tyler was so upset he started crying right away. Dr. Wallis gave in and said because Tyler already had the stoma that he would go ahead and take it out. So that went well minus the little bit of pain that went with it. He went back to school on the 2nd and has been a happy little camper since. I am so proud of him he did great. So far this surgery has been more successful than anything else. (Knock on wood)
Tyler has been to a couple of HopeKid events also. He really enjoyed the Monster Jam. He was able to see Gnomeo and Juliet. We all went to Hollywood Connections last Saturday. It was a lot of fun. He really liked the Laser Tag too.
Well I will write more later. I hope everyone has a very Blessed day!!

Crazy Day

So today was just a crazy day. Tyler was not getting an output out of either catheter. His tummy was getting bigger and I was getting really worried. So I called up to his doctor and told them what was going on. I was worried enough that I called the resident on call. I felt bad cause he was in surgery and I had interrupted that. He told me to bring Tyler in so he can be seen. Well it turned out that there was just some blockage there that was enough that I couldn't push it through. The doc got it all done and unblocked. So that worked out.
Then when we got home I walked in holding Tyler's bag and he was walking behind me. My dog got a little excited and jumped just right. She caught his catheter with her paw and took off. Yes, you guessed it she pulled it right out. I am so thankful that it only had one stitch holding it. Tyler screamed a little and the dog ran even more. So again I called the doctor and they said just to put another one in and tape it. So I have done that twice now cause the first one fell out.


This is when she was a baby. She used to be small lol. Nuckema is the culprit on this one.

I am really hoping that tomorrow goes better lol. Have a blessed day!!

We are home

Yes Yes Yes we are home. Tyler was doing so good he was able to come home on Saturday. It was only the third day after surgery, but he was ready to leave then. His dad keeps calling him superman cause that is what he was like. He slept all Wed after surgery and all of that night. When he woke up on Thursday morning he was ready to get up and walk. He wanted out of bed and out of that room. He only took his 3 doses of Toradol and that was it. He has not had any pain meds since. He is such an amazing little man. He is still doing great.

Before                                                                      After








                                                                                        

                                            That Night

Have a Blessed day!

The last couple days

So the last couple of days have all ran together. Day 2 of bowel prep went good. Tyler was pretty hungry, but did well. Day 3 we checked into Primarys and started the full clean out. That was fun if you know what I mean lol. They had to put in a ng tube and give him a lot of golightly. He broke loose after about 5 or 6 hours of the yucky stuff. The next day was surgery and that went very well.
The surgery took close to 5 hours which really seemed like an eternity to me. They did get done earlier than planned. Which was good lol. He pulled through like a champ. He slept the rest of the day and night.
The day after surgery he got up and took 4 walks. His doctor was very pleased with his progress so he took out the ng tube.
Today is 2 days after and he is allowed to have sips with ice chips. If everything is tolerated nicely then tonight he can have a full liquid diet. There is one small problem right now. He has 2 tubes coming out of his tummy and one of them is not draining at all. We are waiting for the doc to come in and give his opinion. If everything goes well he can eat real food tomorrow.
Tyler is such a CHAMP. He is more and more everyday my hero. He is such a strong and courageous little man. I love him with all of my heart.

Have a blessed day!

I will add pictures later.

Day 1

Today is the first day of surgery prep. Today Tyler started day 1 of his clear liquid diet. Everyone in the house was going to do it with him, but I think it is better if they don't. The other kids are not used to it so, I was a little worried and told them it might make them sick. I still want them to eat other solid foods so they will be okay. He ate almost everything in the house yesterday so I think he might still be full from that. So far he is doing well with it so far. I will keep this updated day by day to show progress.

Have a blessed day!!

Tennis and Basketball

On Friday we went to Tyler's tennis class at the Salt Lake Swim and Tennis Club. He had a great time. He was able to have a lot of one on one time with Dean and Ryan. They are both excellent with the younger kids. He is a little sad that he will be out for about a month. He is doing better and better every time he goes. This time they got to use the rackets and actually were able to hit the balls. Dean had Tyler doing drills and obstacle courses. It was really fun to watch. Tyler's aunt and uncle showed up also to show a little support.

On Saturday we went to basketball and had a great time there as well. This will be the last one that he will go to for this season. There is only four weeks left and he will be recovering for at least that long. He really started getting into it and his team won. That made him really happy and he talked about it for the rest of the day.

Have a blessed day

Family is everything

In our life we go through so much. So in my life I have found that our family is everything. My family has been there for us since day one and even before. Tyler has such a caring soul and he absolutely loves being around family. More times than not it is hard for all of our family to be together. I have two sisters that are in the USMC and so they are gone a lot.
Tyler has such a great love for his aunts. They were both able to come home this year for a short amount of time. It was to bad that it couldn't be at the same time.

In the first picture Tyler is with his Aunt Sam. She was home in early Jan for pre-deployment leave. It will be close to 15 months before they will see each other again.Sam has told me so many times that Tyler is her hero. She is such an amazing aunt to him.

This picture is Tyler with his Aunt Mandy. She was home on leave before she has to go to MCT and start her schooling. It wont be as long between her visits, but it still seems like forever. She also has been an amazing aunt to him.

Have a blessed day!!

Tennis and Basketball

A little over a month ago Tyler asked me why I asking about wheelchair sports. "If I am not in a chair now, why do you want me to be in one"? It was kinda funny because after all of this time of telling him he can do anything, telling him that he needed to get out and try a little of everything. Now I am telling him that he should sit in a chair and play sports. I think this is a way for him to still be very active, but have a lot less of a chance to get hurt. Well it didn't take long and he was in love with it.

 On Friday the 21st, we went to tennis and he had a blast. His coach, Dean who also has Spina Bifida was wonderful. He spent a lot of time one on one with Tyler. Now he can't wait to go back this friday and do it all over again with the other kids. Coach Dean said one of the hardest things for these kids in the hand eye coordination, but that Tyler did very well.


On Saturday, we went to basketball and Tyler was really excited for that. He got in a chair and pretty much rolled right in there. He played the best that he could and did great. He was able to play with a lot of other kids that had Spina Bifida there as well. He met a kid named Ryan who is 16 and is a champion in tennis. He also plays basketball to help the other kids. Tyler told him at the end that if he was on a team he would want Ryan on his team.  It was really nice of Ryan to return with and I would want you on my team too. Again he had a great time and can't wait to go back. We will have to take a little time out during this next surgery, but he will go back.

Soccer

On Wednesday, we went to another HopeKids event at The Complex. Chris Wingert from REAL and some of his friends came out to play with the kids. They ran through some drills first and made it fun. Then we all went over to the other room and had pizza and powerade. They also had a table set up for some crafts. While all of that was going on Chris did autographs and took pictures with the kids. At the end they also gave away a few soccer balls and Chris signed those also.

On Thursday Tyler became really sick. He was asking to go to the doctor. That is not something that he usually does. So I called and got him into his pediatrician. She seemed to be worried about him. She wanted to have him go up to Primary's for observation, x-rays, and some blood work. She ended up giving him an antibiotic for an UTI. I told her I would keep in touch and let her know how he was doing. That if he didn't feel better Friday that I would take him up. Well the antibiotic is a good one cause this morning he felt better. That whole situation was weird cause he hasn't shown symptoms before with UTI's. I am just really glad that he is doing better.

Just a quick note tonight with him feeling better we are going to wheelchair tennis.  It was cancelled, but we talked to a gentleman who's son plays bb. So we are going to try that too.

Have a BLESSED DAY

The next big step

Tyler is still having problems with his leaking. This is after he had a stoma put in his belly button. He has also has 3 deflux injections, a botox injection, and an artificial urinary sphincter. Now they are going to do a bladder augmentation. I am not sure how this is going to help him to stop leaking, but I am listening to his urologist on this one. The surgery is pretty major. From what I understand it is 3-6 hours long with a 7-10 day hospital stay. This is our last option so I am really hoping and praying that this will work. I will keep posting and updating as he goes.

Now the fun stuff we went to another fun HopeKids event last night at The Paradise Bakery. There were cookies and soda provided by the bakery. Then at different tables were different games. We played Uno and meet another family there. It was a lot of fun and we really do enjoy doing things with family. Tyler really likes to meet new people.
Thank you for reading Tyler's Luv and have a blessed day.

A day out

On Saturday Tyler was able to attend the Hopekids event at the Mega Plex Theatre. We went to Jordan Commons and watched Disney's Tangled. It was Tyler, Savannah, and myself. He had an absolutely wonderful time and talked about the movie for the rest of the day.
Then on Sunday we went over to his grandma and papa's and had our Sunday dinner. It was a great time and he loves seeing his family. He really loves his aunt who is home on leave. We had pork and cactus burritos and then his papa and aunt made dessert. It was really fun and I just love to see him smile.

All New

     Hello this is a very new project for me and I hope you will enjoy following Tyler through his trials and tribulations. Tyler was born on July 16, 2001 in Salt Lake. He was diagnosed with Mylomeningecil (Spina Bifida) and Hydrocephalus when he was 4 months in utero. I had the hardest time accepting this because I didn't understand it.  I had recently became a single mom with 2 older children. Savannah was 5 and Christian was 1. I was lost and just knew that I could not handle whatever I was just given. I had no idea what was in store for us. I only knew that our entire lives had changed forever.
     I was told that my son would not walk or talk and that he would be in a wheelchair as a vegetable his entire life. I was told to get all of his medical equipment ready. I thought to myself this can not be. How am I supposed to take care of my other children and him. I struggeled with that thought for awhile. I was also told that he may not make it. Then after a lot of tears and time to think I realized that if he was meant to be he would be. My grandma told me that God doesn't give us more than we can handle. I didn't understand that and why why me. Well I realized that I was strong enough to handle this and I would do it. I had a lot of support from my mom and dad as well.
     Tyler came into this world and he was perfect. Yes his head was a little bigger, he had an open spot on his back, and his feet were severely clubbed, but he was just perfect. I was not able to hold him right away as he had to be kept in a sterile environment. His first trial happened when he was only 17 hours old. He had his back closure surgery. He was able to go home from Primary's when he was a week old. And just a week later he was back in to have his shunt placed. Since that time he has had over 20 surgeries and procedures. Tyler is my hero as he is the strongest little man I know.  Now he is 9 and he runs, jumps, plays, and talks. He is in the top percent in his class at school.
     Tyler is an amazing person and I hope you enjoy going through his journey with him.