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!