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Pictures...lots of pictures

We head to Chicago tomorrow to see the Neurologist. I'm very excited. Can't wait! I took pictures of Tyse and goodness, he looks older to me in the pictures. He is turning into a toddler. Todd was holding Tyse's back so that Tyse could concentrate on holding his own head up, he did a good job for one minute and then he lost the skill. I wish he could hold his head up because pictures of him holding his head up are so cute. Pictures laying down are starting to get old, but oh well.











Todd and I were seeing if Tyse would move his legs so that he could spin on the floor. This device is suppose to be used for tummy time, but we decided to use it for his back. He didn't move his legs at all, but we are working on it.







Pray for us to have a safe trip tomorrow. I'm hoping we will find some answered prayers! Continue reading on....I blogged quite a bit this time. I'm trying to catch up.

Todd and I are constantly playing peek a boo with Tyse. Well, now he learned to play by himself with out the help of Mommy and Daddy. I had him laying on the floor while I was on the computer and he grabbed the blanket and put it over his face. It took about twenty minutes to get the blanket over his head, but he did it! I heard him laughing and I look down to realize that he was laughing at himself. I never laughed so hard in my life. I had tears in my eyes.





Todd was home this second time that Tyse played peek a boo by himself. Todd witnessed our funny little guy laughing at himself.







This picture makes me laugh every time I look at it. Tyse is being quite a character lately.


I have a lazy famiy!!! haha!


Todd and Tyse being crazy!


He is looking older to me...


Proud of my simple scrapbooking work:

Yuck...paperwork

I signed some papers a couple of weeks ago asking for help from the government. I received a letter from Social Services the other day letting me know of my schedule appointment time. It would be nice if they called you to see if you are able to attend. My appointment is on April 2nd, but I am unable to attend because I will be at Riley’s Hospital with Tyse. Tyse has his check up with the ENT to make sure his adenoid removal was a success. It definitely has helped him out a lot. Anyway, I called today and let them know I am unable to attend so my next option is to go in on April 17th. The lady told me it is first come, first serve. I’m thinking okay….that doesn’t make much sense. I do not understand why they can’t reschedule my appointment but they are unable too. I may be sitting in the office all day unless I am able to get there before anyone else arrives.

The next thing that I am shocked about is all the paperwork that I have to bring in. I have to bring in birth certificates, medical records, driver’s license, picture ID, court records, marriage license, mortgage payment book, utility bills, prescription records, doctor, lab, or hospital visits, medical insurance payments, all records from doctor or hospitals must be signed by doctor or hospital, vehicle registration, title, bank statements, records of stocks, bonds, trust funds, pay stubs, employer’s statement of earnings, receipts of income, insurance coverage, insurance policies, statements, payment books, identification cards, life insurance policies, statements of life insurance, signed statements of how much money you owe on any loans, and statements of the loans. Plus a complete list of all of his doctors in the last 12 months.

In one way, I understand the necessary for all the paperwork, in other way, just take a look at my son and you can tell he is developmentally delayed. That is a lot of paperwork and almost to the point where I think that is ridiculous. Doctor records should be good enough. I’m going to have to walk in there with a stroller for Tyse and a stroller for all of his paperwork. He has a lot of medical records. I use to get them all but I realize that the doctors/nurses write down every detail which is very good.

Tyse feels so much better since his adenoids are now out. He is sleeping through the night and starting to become his normal self again. He doesn’t know how to talk yet. He coos O, R, MMM, Aboo, and Agoo. I wish I could get him to say something else. I try and try, but it doesn’t work. The wonderful thing about Tyse that I did a terrific job teaching him was communicating. He says something then I say whatever he said. It’s almost as if we are talking back and forth to each other. If I do not talk back then he gets mad and starts to cry, not always but sometimes. One of our goals in therapy is learning more sounds and talking more. I hope one day he will be able to talk and say, “I love you Mommy”. I have strong faith that he will. It may not be anytime soon but someday. I’m at the point where I don’t care what Tyse’s first words are. It’s not important to me. Most parents it would mean the world for their children to say Mama or Dada first, but when you have a child that is delayed then you don’t care what they do as long as they do something that is “normal”.

This is a really good picture of Tyse doing something called fencing also known as asymmetrical tonic neck reflex. He was suppose to lose this reflex I think at 3 months or before first birthday, but as you can still see he still does it.

Parenting

It is extremely difficult that Tyse is my first and that he is delayed. It’s hard for me to talk to Moms who have developing children especially if they have a child close to the age of Tyse. If I was a mother to a developing child then I would talk about all the wonderful things he is doing now. Its part of parenting, but watching another Mom go through that happiness that I longed for is hard. I am so happy for them, I’m glad that they do not have to go through my situation because I would see a lot of good Moms break down or wouldn’t be able to handle it. But my heart fills with sadness at the same time because I have to watch my child struggle. Tyse has taught me many things this past year and I’m sure he will teach me many more. One of the things I learned to embrace is every moment. I get excited when Tyse grabs a toy, coos at someone other than me or Todd, puts his lips on a side of a cup, or just does something out of his ordinary. I do not know what God is trying to teach me, but it must be something good. The one good shocker that I think may shock you all is my husband, Todd. When I was pregnant with Tyse, he told me he wanted to only have two kids, and before we got married I said four and he agreed. I was so upset because I really want four children. Anyway, after we had Tyse a couple of months later he said to me, “I want five kids.” I laughed and replied, “That’s one too many for me. I only want four.” But you think being in our situation. We wouldn’t want anymore children, but actually we want even more. We both said, “Hey if we can handle this, then we can handle anything.”

I am supposed to have twins. I’m next in the generation. I often joke around with my Mom and Todd saying, “Watch, God will give me twins next time I get pregnant to make up for our situation now. In one way, we get to enjoy the little things and then if we have twins then we don’t get to enjoy anything. So all the milestones that parents talk about, we had three kids and missed them all.” But Todd and I say we don’t mind. I hope I have twins. I think that would be wonderful. Anything God gives is wonderful.

Wow, what a surprise! This was awesome to see Tyse playing with the basket and dumping it.






Children are expensive, but a delayed child is even more expensive. I shop more at my local home medical store than I do my own grocery store. I live online so I can talk to other delayed Moms or order expensive products that I will never find in any department store. I stay home because child care would cost double and because Tyse has therapy three times a week. I see his doctors, nurses, therapists more than I see my family and friends. I spend lots of time on the phone during the week calling his nurses asking questions. Hopefully, we will get some kind of help we are looking for. It is well needed. Todd has a good job, and we are making it as of now, but once he gets older than he will need big items such as wheelchair, lift, bath equipment…etc.

Accessible

I see a lot parents that are scared when therapist talk about wheelchairs for their children. Todd is one of them. I reassure any parents who are scared that having a wheelchair isn’t the end of the world. My Dad is in a wheelchair. He got hurt while he was in the service. It happened before I was born. When I was growing up, I use to think that most parents were in wheelchairs. Once I went to grade school, I realized that it wasn’t that common as I thought. I had a lot of kids that stared and it got on my nerves. I kept telling them to stop and mind their own business, but they were curious. They were mostly curious about the car lift or the lift inside our house going up and down the stairs. To me, I saw it as being normal, but to another child it wasn’t. There is a part of me that wishes I could have seen my Dad walk, but the bigger part of me says it really doesn’t matter. He still is the same person. I love him with all my heart.

I’m glad that my Dad is in a wheelchair because it helps me with Tyse. I could care less if Tyse will walk. Sounds so bad to say, but then again, it isn’t the end of the world. I may have to complain a lot to stores and theme parks, but it is worth it. Disney World and Universal Studios are great places for handicap. In 2000, my Dad took me to Disney World and Universal Studios. When we use to go when I was little, he didn’t have much to do and he had a good attitude about it. I think it was because he saw how happy me and my brothers were, but over the years, I think Disney World is getting better along with Universal about handicap accessible. Anyway, there was a sign in front of ET saying it was handicap accessible. So we decided to try it out. My Dad was scared that he would have to get out of his wheelchair and he couldn’t do that, but when we got up to the line they pulled out a special lift from the side and strapped his chair in. Still to this day, I remember not even paying attention to the ride. I couldn’t tell you exactly what it was about because I kept looking back at my Dad and seeing him smile. He was so happy. We were doing something together as a family. I get so teary eyed thinking about it because we don’t have a whole lot of memories like this one simply because many places do not think of my Dad or think of every single person out there to accommodate for. Yes, it’s a lot of work, but it is so worth it so children and parents can have these moments. Now I look forward to having these moments with Tyse. I look forward to taking Tyse to places that have thought about his needs.

I wish places would think about babies like Tyse and make special shopping carts to keep in their stores. That would be a blessing. My goal is to come up with a design and push for it. So that way, in the future, Moms do not have to carry a 20 pound infant in an infant car seat because that is the one thing that works with shopping carts. So what if my child can’t hold his head up, not everyone is perfect, maybe places or stores should think of a special seat in the cart so I can have a normal shopping experience. It would make my life a lot easier in so many ways. Plus, it would save me from building all this arm muscle and back pain. I feel like I’m getting old and I’m not that old. In the next month, I have to retire the wonderful infant seat and move to a bigger car seat. The infant seat was nice because it had a handle on it and I could put it on the shopping carts. Now I am creating a special seat for Tyse. It is extremely difficult, but I think I finally figured it out.

I love this picture of me and my Dad.

Stem Cell Therapy

Many of you may have seen the Today Show about a boy who received stem cells from his umbilical cord to help/cure his Cerebral Palsy. The video aired on March 13th. Here is the link to the video for those who missed it.

http://www.msnbc.msn.com/id/23572206/

Isn’t that such an awesome video? I have recently received many emails about this. Thank you for letting me know. Unfortunately, Tyse isn’t a candidate for this clinical trial because his umbilical cord was severely damaged. I found out that if your child suffered from loss of oxygen that the umbilical cord was no good. I do not know if this is true or not, but I have already contacted a reliable, knowledge source to tell me the answer to this question. The boy, Dallas didn’t have any complications at birth, he has Cerebral Palsy due to lack of oxygen in the womb. His parents did save his umbilical cord and were able to use it.

Todd and I are looking into stem cell therapy. Clinical Trials are supposed to grow within the next ten years. Hopefully, after the doctors and researchers find the information they are looking for then this maybe available to all children who have Cerebral Palsy. Though, politics are involved and the doctors need to prove that stem cell therapy can be a good thing for those who are suffering.

I have contacted a couple of well known medical university and hospitals to find out how Tyse can be a candidate. I am still waiting on an answer. Stem cell therapy is a trial and error. It either works or it doesn’t. The cells travel up to the brain where the part of the brain is damaged and take over. That is why the results are amazing because the brain starts working properly. Or it could travel up to the brain and show no results. It depends.

I have found a clinic outside the US that does stem cell therapy. Todd and I are investigating and doing research. Once we find out what we are looking for and get the answers that we want then it is a possibility that we may give this a try. We already have been looking up alternative therapy. I have been in contact with an amazing therapy center in England. We were seriously thinking about going, but then we heard about stem cell therapy and now we are going to do our pros and cons of each therapy. I will let you know what we decided.

To all first time moms out there or young parents, save your child’s umbilical cord. It does cost a couple of thousand, but it is worth it. It is worth it if your child were to ever need it for a medical problem or for children like Tyse. The Cord Blood Registry does send you a free information kit. Visit the website, http://www.cordblood.com/.

I found this bible quote that has hit home for me. “Look upon the things above – the power and strength and majesty of our loving Heavenly Father – and get yours eyes off the things below – your circumstances, your weakness, your fears (Colossians 3:2 HCSB)” I finally figured out what I am suppose to do. I am suppose to look through my circumstances to God. He could change them immediately, so instead of asking, “Why me?” I am supposed to ask, “What do you want me to do, Lord? What are you trying to teach me?”

God asked a man born blind to go wash in Siloam. John 9:7, NLT Siloam means sent. The blind man did exactly what Jesus said and walked back to Jesus being able to see. "Since the world began it has been unheard of that anyone opened his eyes of one who was born blind", John 9:32 NLT. My hurt that I have felt for the last year has strength my faith. Now I am suppose to do exactly what Jesus wants me to do. I am confused as to what that this, but I think I know. Jesus uses our obedience to help others see the power of God. “The beggar’s neighbors began to ask, ‘Who healed you? What happened?” John 9:10, NLT

Pray for Tyse to get stem cell therapy. Pray that it could come close to curing him. Pray that he will be healed.

Flu Season...see ya later

I haven't been able to update my blogs because my husband, Todd was sick with the flu last Wednesday. I ended up being sick with it on Monday and Tuesday. Tyse is currently sick with a cold. Lately, I have been scrapbooking. I use to scrapbook every once in a while, but after I had Tyse I haven't had time. I try to scrapbook at least an hour a day. I need to give myself a break.

Tyse's left eye is twitching. I noticed it the other day. I called his eye doctor today and he told me that it could be a muscle spasm. He said keep an eye on it. haha! Anyways, if it doesn't stop by Monday then I need to call him back. I hope it goes away and it isn't anything serious.

I noticed lately that Tyse is putting one hand near his face or near his mouth. Which is a good sign for him. Usually his arms are always out to the side waving around. He has another tooth up top coming in. I can't wait till teething is over with. He is starting to bite his lip again.

I had a meeting with First Steps. I added a couple more goals to his list. We haven't yet completed any of the goals we started with, but hopefully, someday we will. I added for him to have a pony walker in the future, to learn to talk, and to be weaned off feeding tube. All those goals will take a long time and some may never get completed, but you have to have goals in order to try.

This month is a month off from Riley visits. Yea! Then we go back down to Riley a couple of times in April. I decided since I drive all the way down there for 15 minute appointments that I may as well find the scrapbooking stores to stop at on the way home. So I did just that. I have my next trip all mapped out and looking forward to it.

I signed up for Children's Disability Service through the state, Medicad, and Hoosier Healthwise. I doubt we will qualify for Medicad or Hoosier Healthwise, but you have to sign up for both of those in order to get Children's. I'm also looking into Medicad Wavier. If anyone knows, how I can get this form please let me know. I asked my coorinator but she had no idea what I was talking about. I have heard several Cerebral Palsy Moms talking about it.

I have lots of cute adorable pictures to post but I do not have time. It will have to be on another day when Tyse is in a better mood. He is currently crying now begging to be held so I must do my job. Take care!

Sad Side of Life

"In terms of putting special needs kids on our covers, we've learned
that the logistics make this really difficult and expensive...we
have to hire a professional photographer, go to a family's house,
and then hope that the children are in good moods and will
cooperate."

One of the CP Moms in my support group saw this message posted in a twins magazine. This comment made a lot of disability parents mad including me. My son smiles when the camera flashes. He loves to be photographed. He does really well when I take him to the studio or when someone else is taking a picture. All children can act up and not cooperate. It’s part of being a kid.

The editor who wrote this acts like children with disabilities are a hassle. It’s sad to say, but I’m sure most Americans think that too. I think the only reason why americans think that way is because of how children with disabilities are perceived. I’ll admit it, when I was in school, I was afraid of children in the special need class. I didn’t know a thing about autism or cerebral palsy. Now that I know and I’m a mother to a special need child, I look at the world differently. I am ashamed of myself today for being so scared because I could have met some really cool kids. I could have taken the time out of my life to get to know them.

I think this world isn’t education enough on children with disabilities. I think children should go to a class to learn about the disabilities so that they can learn not to be afraid and not to make fun of anyone. I think adults should have to take a class before having children of their own. But, we do live in a free world.

This past year, I have been hiding myself and Tyse behind closed doors. I do not want to hang out with anyone who has “normal children” because I feel like my son isn’t good enough. I feel like he is not apart of this world, but apart of a different world. I’m afraid of the hurt that may be down the road, or the long list of questions that are waiting for me. I get tired of always saying his story a thousand times over hoping that someone will get it the first time I say it.

This article made me realize that if I don’t open my doors and walk into the light then Americans will keep thinking my son is a hassle or thinking the worst possibility. They will never get to know his laughter, his smile, or his abilities. I have to education every individual and share with them the facts of Cerebral Palsy. I have to give them the knowledge that they may be looking for. I may knock on the wrong door, or get the door slammed on my face, but there are a lot of those Americans out there who are so kind hearted and want to get to know my son. Then maybe, the ones who learned about Cerebral Palsy will tell those who didn’t want to listen to me. Wouldn’t the world become closer to being a better place?


Tyse and I are doing better. Tyse is still vomiting but I think it is due to reflux issues. I think I'm over my cold. My neck isn't swollen anymore. Thank you for your prayers!

Tyse and Mommy are sick

I probably won’t be updating blogs lately because Tyse has the flu. Yesterday, he vomited all day. He even vomited pedialyte which is rare for him. I hope today is a better day. I hope he holds down some liquids today. I'm sick too with a cold and have a swollen lymph node in my neck. It hurts badly. I have never had one before. It hurts to move my neck or move my head at all. We are all trying to hang in there.

Bye Bye Adenoids!!!

Todd and I are happily to announce that Tyse had to have his adenoids taken out. Hopefully, this is the golden ticket that we are looking for. We are hoping to get our baby boy Tyse back and he will start feeling like his normal self again. The doctors at Riley Hospital tried convincing Todd and I that Tyse would grow into his adenoids, but they were surprised to see that they were obstructive. I am told by a couple of doctors that if you have enlarged adenoids that you will have a lot of ear infections, but he hasn’t had one. His sleep study also showed mild apnea so Tyse just proved to everyone that it is good to do more testing and not to assume off of basics.

His surgery lasted a half hour and it went by fast. The doctor told us that Tyse is in recovery and that we were able to see him in thirty minutes or so. Todd and I decided to go have lunch. I called family members to let them know that Tyse’s surgery went well. Todd and I came back up to the waiting room and waited over an hour. I knew something was wrong. I got a call in the waiting room from the nurse advising me that Tyse is having trouble breathing and that he has a team of doctors around him. I was very nervous.

Twenty minutes later we were able to see Tyse in recovery. Tyse’s oxygen saturation was dropping down to the low 70’s. It is suppose to be 90-100. He looked awful. I haven’t seen him look that bad since he was born. I was very worried. The doctors said that they were moving Tyse to ICU. I wasn’t sure what was going to happen. I had to leave the room because I was getting sick to my stomach.

He wasn’t swallowing any of his secretions. The nurse had to suction him out every minute. She did a good job at not leaving his side and asking for help. Todd and I sat there for two hours trying to get Tyse to swallow. It was very difficult because he wasn’t opening his eyes. We needed him to fight the drowsiness from the anesthesia. We would move our mouth around and say, “mmm” But we needed him to look at what we were doing. When he did swallow we said, “Yea, good swallow.”

He also had a lot of nasal discharge which he has never had before. His nose has always been stuffy, never runny. The nurse had to suction his nose out as well and I have never seen so much discharge in my life. Once his nose stopped runny then he was getting better at swallowing his secretions.

The doctors came back and observed Tyse. He didn’t drop his oxygen saturation in over an hour. He was staying at 98 so the doctors said he could go up to the Infant Unit. I was happy. As we were walking in the hallway of the Infant Unit, I turned to Todd and said, “Wouldn’t that be funny if we were in the room we were before when Tyse had his G-tube surgery.” Todd smiled. Then the nurse who walked us up to the floor asked the other nurse where to put Tyse. The other nurse replied, “That room.” Well, it ended up being the same room as his G-tube surgery. We felt like we were home again.




Tyse and Mr. Cuddles in the hospital

Tyse ended up spending four and half hours in the recovery and 24 hours in the hospital. He is doing well. Thank you for all your prayers. I was very scared about this surgery. The bad thing is adenoids can grow back in but that could take months or years according to his doctor. Also, the doctor informed us that Tyse did have enlarged tonsils, but he is too young to have them removed. He could grow into them. Tonsils help the immune system so doctors do not like to take those out, but if we notice any problems with Tyse then he will have to get those removed. It could be months or years. You never know.

He had his G-tube replaced. It didn’t hurt him at all. It would have but he is on pain medication. His old G-tube was leaking a lot and when we pulled the tube out then his food bubbles up to the button. We found out from the doctor and nurse that that isn’t suppose to happen. Well, he did get a new G-tube, but we still have the same problems. I have to call and see what they want to do. His G-tube is supposed to lay flat in his stomach and instead it is position upwards going towards his rib. He may have to go back to surgery to get it repositioned. I don’t know yet. That may not be a possibility since he has had it in so long and the stomach already grew around it.

Bronchoscope

Tomorrow is a big day for Tyse. He is going to have the bronchoscope and possible surgery. They already schedule him for an adenoiectomny (I might have spelled that wrong)tomorrow. I'm starting to get nervous. I sure do hope they find something and that everything goes as planned. We have to be there at 8:00am in the morning so we will be leaving here at 4:00am. His bronchoscope/surgery is at 9:30am. Most likely, he will be admitted and we will spend the rest of our day in the hospital. We have to be there anyways because on Thursday he is getting a new G-Tube placed. The G-tube appointment is in the afternoon. Hopefully, after that we will be returning home, but it is all based on Tyse's recovery. I'm praying that he will have a speedy recovery.

The one thing that I love about Riley's Hospital is that they have a McDonalds inside opened 24hrs. It is wonderful. When Tyse had his G-tube and Sleep Study, Todd and I would sneek away from Tyse when he was asleep to go get a shake. We weren't expecting a lane because it was late in the evening, but several other parents were thinking the same thing. There is nothing like a chocolate shake to unwind from all the stress of the hospital environment.

I'll post an update once I hear back from Tyse's surgery. Hopefully, I can find a computer available. I really need to get myself a laptop. Pray for us to have a safe trip there and back home. Pray for Tyse.

Cleaning House

Wow! Happy Thirteen Months Old Tyse! It's hard to believe that your One Year Birthday was a month ago. I still have some of your balloons floating around in the house.

Today, I have been spending most of my time cleaning the house. Todd and I were in the process of starting to build our house when I found out I was pregnant. I had terrible morning sickness and it lasted throughout my whole pregnancy. I wasn’t in the mood to do anything. When it was time for us to move I just threw things in boxes. Usually before you move, you get rid of stuff, well I was opposite. I said to Todd, “After I have the baby then I will start getting rid of things.” I did have Tyse, but now he has all kinds of medical problems to keep me busy. I have been telling Todd for a long time that I needed to get to the boxes downstairs or in one of the spare bedrooms. Today was the first day I was able to get rid of some stuff. I did a lot of shredding. I still have a lot more cleaning to do, but hopefully before spring I will get to everything. I found a receipt that means the world to me. It was on January 17, 2007. A day before Tyse was born. I remember that day clearly. It was the last day I was pregnant, it was the last day where I felt my dreams were live, it was the day that I should have had Tyse on and to ask for a c-section. It was my last day to have a normal life. I bought three gallons of Milk, Sunny D, two packages of cookies, and a movie. I wish I knew that the days yet to come would be filled of tears, hurt, anger, resentment, sorrow, and blindness. I wish I knew what to pray for the night before or to continue to pray for until I was in labor. I wish I could have prepared myself with a taste of the future. I wish someone would have told me.

I found another interesting thing today too. I found my cards from my wedding that I sat on the table that said, “Bippity Boppity Boo! Our wedding day will soon be through! So please predict where we will be on our fifth wedding anniversary. When the time comes we will read the myth to see if it came true for us the way you predict it to be. Bippity Boppity Boo!” If you can’t already tell, my theme for my wedding was Cinderella. Anyway, it’s funny because no one wrote a disability child. Everyone wrote a happy thought. There is nothing wrong with that, it’s just that life doesn’t always go the way we see it in our eyes or mind. The only person who was so close to the actually truth now was my Great Grandma Sharkey who just passed last May. She wrote, “Taking a special night out from the baby.” It hasn’t been five years, but she is so close to the reality of today. Even if Tyse was born with no complications she still would have been closer to what anyone else wrote. I wish I could talk to her today. I miss her.

My life is starting to de-clutter and I feel good about it. I feel like a huge weight has been lifted off of me. I can’t wait till I get my house clean and organized to where I want it to be. That will feel even nicer. I have so much paper work with all these doctors’ notes, therapy notes, receipts, bills, etc. It seems like I can never get organize and file it all. Someday, I will have it all taken care of….maybe. Well, I need to get to bed. It’s late.

Tyse's Story

My name is Tyse. I was born on January 18th, 2007. My mommy had a normal pregnancy until she was close to having me. My heart rate was going down and the nurses tried everything to get it to go back up. My mommy was rushed into an emergency c-section. I had the nuchal cord wrapped around my neck just one time, but it was tight. I had no respiratory effort once they got me out of my mommy's belly. It took the nurses and doctors three minutes to get me back to life. I was in stable condition until I had a grand mal seizure one hour after birth. I was transferred to another hospital and I had to leave my mommy behind.

I was shaking and jerking a lot after birth. All my tests came back normal, but I had another seizure when I was three days old. I had trouble gaining weight while being in the hospital. I still have trouble gaining weight today. I have cerebral palsy. I am experiencing spasticity in my arms, increase muscle tone in the legs, and decrease muscle tone in the trunk. I am one year old and there are still a lot of things that I cannot do. The things I cannot do yet is hold my own head up, roll over, crawl, and I have trouble grabbing toys because of my spasticity. I can smile and laugh which makes up for the things that I cannot do. I am just like any other toddler my age, but physically I am behind. I have an oral aversion so I am G-Tube feed only. Hopefully, someday I will find answers as to why all of this happened to me.

My name means fighter. My parents had the name picked out before I was born. I was nicknamed Tiger after I was born because I continue to fight. I fight every day to be strong.

About this New Blog.

You can leave messages on this blog by clicking on the 0 comments down below in the right hand corner. The comments below are for the posting and the guestbook is letting me know who is viewing my page and if you like it or not. Or you can tell me your story. I love to hear all.

The nice thing about this blog is that you do not have to sign in. I do not know if you will receive updated messages for this blog. I'll have to look into it. You can keep checking too. An easy way to check is to save this website underneath your favorites on your computer screen.

I will continue to update carepages too. So you choose your pick. There are things that I cannot put on carepages though because I signed a form about their terms and conditions.

Tyse's First Year

Here are pictures of Tyse's first year.



Before Birth. I am 36 weeks pregnant in this picture.


Birth


One Month Old


Two Months Old


Three Months Old


Four Months Old


Five Months Old


Six Months Old


Seven Months Old


Eight Months Old


Nine Months Old


Ten Months Old


Eleven Months Old


One Year Old

Tyse's Guestbook

Welcome! My name is Jennifer and I update Tyse's page almost daily...well I try too. He is my first child. I am very blessed that he is apart of my life today because I was close to losing him at birth. I cherish every moment that I have with him. I have been blogging since the day he was born telling his story. The first year of his story is on a different blog that is private. I decided to open the doors and write on a blog where I have a bigger audience. I choose in blog in Cerebral Palsy Awareness colors. Blue and Green. Blogging has helped me release so many emotions and helped me open up more. Please write me a message and tell me about yourself. How did you find this blog? Tell me your story whether it is a happy or sad.

March for Babies

Readers,

I look at Tyse every day and I think how did this happen to him. He is too cute to have Cerebral Palsy. He should be walking right now. He should be talking and handed me toys. I should be running around the house chasing him from one room to the other. It shouldn't be this way, but it is. The dreams we once had changed within a matter of minutes and though it will take me a long time to understand. I still have to face reality. I can think of at least ten products to design to help babies like Tyse live a somewhat normal life. My life would be easier if restaurants carried highchairs that reclined with a high back or if carts at the grocery store would recline with a high back. I could go shopping and go out to eat without worrying what am I going to do with Tyse. It would make my life a lot easier. Tyse would be happy to sit up and look around. I wouldn't have to deal with the attention of everyone looking at me carrying a highchair in to the restaurant wondering why I am not using theirs.

I think everyday, what can I do to help Tyse? How can I make his future better? How can I help the parents in the future who will have children with Cerebral Palsy? I will constantly be saying these questions to myself every day. It would be a lot easier if Cerebral Palsy was cured, but it will probably be a long time before we see that discovery. I have emailed products and I have already let them know that their product worked or how to modifty it, or I have an idea. I have only heard one response from one company but that does not mean I'm going to give up. I need to keep trying until they hear me. If I can make someone else's life in the future easier, then I'm going to do because I have been there.

March of Dimes is doing something for me. I copied this from the March of Dimes Website:

The March of Dimes supports a number of grants on prenatal brain development and factors that may disrupt it. For example, one grantee is studying how developing nerve cells in the fetal brain respond to prolonged oxygen deprivation. This can improve understanding of how lack of oxygen before or around the time of birth can injure the developing brain and how such brain injuries can be prevented or treated.

Cerebral Palsy is caused by lack of oxygen. I started a team called, "Tyse's Team" It's a very catchy name, but I couldn't think of anything else. Here is the website: http://www.marchforbabies.org/501794.

If you are interested in joining Tyse's Team then email me. If you are interested in sponsoring me then please visit the website above.

Thank you for taking your time on reading this message from Tyse's Mommy! You can also forward this to family and friends.

Love,

Tyse and Jennifer

No Sleep for you Mama

Happy Valentine’s Day!

It’s earlier in the morning at my house. Well, let me say this…it’s still night time to me. I haven’t made it to bed yet and it looks like I’m not going to any time soon. I had to escape from Tyse. He is sitting in his bouncer at the moment crying. He has been crying for a while now and I need a break.

He fell asleep tonight on his mat at 10:00pm. I thought “Yeah, it looks like I will sleep tonight.” I shouldn’t have assumed. I feed him at 10:30pm and finished at 12:00am. It takes a long time to feed him through the tube. Feeding through the tube doesn’t take that long, but with Tyse I have to go extreme slowly. I put Tyse in his crib at 12:00am. Two minutes later I heard screaming. I ran into the bedroom and Tyse was soaked. He ended up vomiting in his crib. I couldn’t believe it. This is why I have to feed him slow, but it doesn’t seem to be slow enough. I have tried the feeding pump and feed him over a long period of time, but it still didn’t work. Believe me, I have tried everything. I am told it has to do the brain. Since he did have a brain injury this remains mystery.

It took me almost an hour to get him to calm down. Finally, I had him back in bed at 1:00am. I climbed into bed and started thinking about life. I always do this. I think about the couldas, wouldas, and the shouldas. For example, I wish Tyse could walk so when he isn’t feeling well he could come get me or climb in bed with me. I wish I would have gone to school instead of having a family. I should have followed my dreams rather then following my heart. My eyes were slowly closing when Tyse woke up. I looked at the clock and it was 2:00am. He has been crying non stop. I have tried everything. I have sang him his favorite lullaby song, rocked him in the chair, walked around with him, laid him on the floor, tried playing with him, but nothing is working. I know he isn’t hungry. He might have aspirated. I don’t know. I’ll have to keep track of his temperature.

Right now, he is arching his back a lot. It has to do with Cerebral Palsy. I am told this is one of the things that they do a lot. Tyse doesn’t do it all the time, but I have noticed he is starting too. It makes it really difficult on holding him. He is so strong and can fight back. If it wasn’t winter and Tyse didn’t get sick so much then I would take him for a drive. I think that would make him fall asleep. Confession: I drink lots of caffeine; in others words Pop/Soda to keep me up all the time and I probably gained 10-15 pounds doing so. I can’t wait till Tyse starts sleeping through the night again so I can lose the weight I have gained. Chances of me napping during the day today are very slim. He has therapy this afternoon, but I may have to cancel due to him not feeling well.

I bought this new chair for Tyse called Rock N Dine Rocker/Booster. It is a chair that you hook on to the table at a restaurant or he can use it as a rocking chair. He actually did rock himself in the chair. He moved his feet a little bit and he started rocking back and forth. That was pretty awesome to see. He did alright today. He is still biting his lip, having trouble swallowing his secretions, sounds congested and having trouble sleeping. Maybe there is a light at the end of the tunnel that we are in.


I like this picture (below) because he was cooing when I took it.

Tyse meets Uncle Troy

Tyse was able to meet his Uncle Troy for the first time this weekend. His Uncle is busy with school getting a doctorate in Computer Science and lives six hours away. I am hoping that if Tyse is able to get a job that he goes into the computer field. He can drill his uncle and Grandpa (my Dad) about computers.

Todd and Troy are fraternal twins and I think Tyse sensed that. He did really well with Uncle Troy. I couldn’t believe it. He usually plays shy unless you see him on a regular basis, but he was cooing and laughing with Uncle Troy like it was his Dad. I was shocked. I thought he would play some what shy at first, but he didn’t. He fooled me! I love this picture of the three of them. It is so cute! Look at Tyse’s smile…he really does have my Dad’s dimples. When my Dad comes back up to visit I want to get a good picture of him and Tyse with their dimples showing.

Thank you Uncle Troy for coming over to the house to visit. We look forward to seeing you again!


A Message to Andrea:
Thank you, cousin Andrea for the Spider Man outfit that you got Mr. Cuddles. We love it! Love, Tyse


Tyse is doing okay. He is doing a good job at hanging in there. He is waking up a couple times through the night but so far I’m able to get him to fall asleep fairly quick. I am starting to get very nervous because February 20th is slowly approaching. I hope and pray that the ENT (Ear, Nose, Throat) specialist find something when they do a bronchoscope. I hope the surgery goes really well and Tyse recovers beautifully. I hope he has no complications and he comes home the happy boy that I am use too. Please pray. Oh, Tyse is back to biting his lip again...

My biggest fear about this surgery is not finding anything, dying duing or after surgery, or bleeding and having to go back to OR room. Another fear is Tyse getting sick a day before the surgery. The only thing I can think about is this surgery. My mind is constantly racing with thoughts and emotions. I am already to go. I packed my bag three days ago.

Todd and I have a long list of things we want to do this spring if Tyse does get better. We would like to visit long distance relatives, go on vacation, and move Tyse to his big boy room. Tyse still sleeps in his crib in my bedroom. I am hoping that if he will get well enough to move upstairs to his room...if not oh well. It saves me from exercising up and down the stairs.

Take care everyone and God Bless!