"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
" Faith makes life possible. Hope makes life workable. Love makes life beautiful."

The Winwards

The Winwards

Saturday, December 12, 2009

Spina Bifida Christmas Party




We were able to attend the Christmas party for the spina bifida association here in Arizona. They had lunch, entertainment, and Santa. The lunch was hamburgers, baked beans, potato salad, soda, and a cookie. Tanner liked the cookie the best. :) The entertainment was a local girls dance group. It was so cute! They danced and sang christmas songs from around the world. When it came time for Santa, it was a long wait and I was afraid Tanner would have a meltdown before we got there, cause he was long overdue for a nap! But we did make it, and he wasn't sure what to think. Just stared at Santa with his eyes wide and his mouth open at first.....then looked for me. Once he saw me, he lost it and started crying. It was too cute! I know, I know... mean Mom. :) Each child received a gift bag with 3 gifts inside that had been donated. Tanner got a christmas book, a stuffed bear, and a ball.

It was really nice to meet other families that are dealing with some of the same things as Ray & I. I was also able to meet a few kids that have the same level of spina bifida as Tanner, and see that they are independant walkers. That gives me hope for the future, but I try not to dwell on it too much.

Tanner is so facinated by all the christmas trees. Who can blame him?? All the lights, and sparkling ornaments..... anyone in their right mind would love that!

Later tonight we went to Don & Arcelia's ward Christmas party, so Tanner got another round with Santa, and he cried much quicker this time! It was fun to hang out with family.

Sunday, December 6, 2009

Tanner loves the Wii

So we decided that we would get a Wii and Wii Fit for Christmas this year. We already have it and have been using it. Tanner is mezmerized by it, and loves the music and the wii remote!



Tanner has begun to "dance" with music. He bounces up and down. In fact, this boy loves to bounce! And as you can see put everything in his mouth!

video

Sunday, November 29, 2009

November

Well - since I didn't really start this blog until the end of November, and I didn't write an update... this post is looking to be pretty short! :) Ray &I hosted Thanksgiving at our new house, and it was my first time making a turkey! I was really nervous about it, but with Arcelia's help it turned out great! We had a lot of the family over and it turned out to be a fun day.



Tanner loved Thanksgiving! He ate a lot! He loved the turkey with gravy, stuffing, green bean casserole, and sweet potatoes!

Tanner went to see Dr Segal (orthopedic surgeon) this month. He has grown out of both his AFO's and his Ponsetti braces, so we have an appointment for Dec 1st to be fitted for new ones of both. Dr Segal said that Tanner's feet look really good, and his hips are better. His right hip still pops out once in awhile, but pops back in on its own, which he said was good. I really like Dr Segal because he has a great bedside manner. He is also willing to listen to what I think, and we work together to come up with the best possible solution for Tanner.

Something super exciting happened over Thanksgiving weekend! Tanner learned how to army crawl! Its so cute, he giggles the whole time while he is trying to reach something. He has this little evil laugh if he is going for something that he knows he is not supposed too. It's almost like he is thinking "Ha Ha, I'll get it before they notice!" :)

video

Sunday, November 1, 2009

Spina Bifida Walk

The Spina Bifida walk was yesterday, and it was tiring... but fun as well! I ended up raising $525.00 total. Don, Arcelia, Emily and Allen went with me. I was going to take Tanner with me, but he had been sick... so I left him home with Ray. I was only going to do the 3K, but ended up doing the 5K cause Arcelia wanted too. Needless to say I was so sore later!

They had a drawing after the walk, and I won 4 different things! I never win anything! I got 2 CD's, a 2 night hotel stay in Aspen, Colorado (not sure when we'll be able to use this one), and a $50 gift certificate to Dick's sporting goods. Don & Arcelia won a backstage pass to 104.7 radio morning show which they ended up giving me. I haven't used that one yet either, but I will!

It was nice to see that I'm not so alone in my quest to giving Tanner a good life and trying to embrace the challenges that go along with spina bifida.

Sunday, October 4, 2009

Great News for Once!




I wanted to let you all know that last Friday, 10/2 Tanner had a follow up with his urologist, to make see how his "plumbing" was going. He had a renal ultrasound, and passed with flying colors! We don't have to go back for 1 year! Unless of course he has an UTI (which he has not had one to date), knock on wood!

Needless to say, I am so happy! No cathing for at least 1 more year! I've set a goal for myself not to think about the future so much, and cherish each day with my little man!

Tanner is growing so much! He now can push himself up to a sitting position from laying down! Just accomplished that this week! I'm so proud of him! He is also feeding himself all sorts of snacks. There is a bit gagging here and there, but that is usually because he has put too much in his mouth!

I'm also planning to participate in our local spina bifida "walk "n" roll". It's the morning of 10/31, and I'm excited about getting involved a bit. If you would like to make a donation or just see what it's about, visit the following page - www.sbaazwalknroll.org/4tanner
or www.sbaazwalknroll.org.

Anyway, that's what's going on in my world! Thanks for reading!

Monday, September 14, 2009

Time sure does fly!



I can't believe that my Tanner is already almost 9 months old! It has gone by so quick!

Tanner now weighs over 20 pounds and wears size 12 months or bigger clothes! He has mastered sitting for the most part, but still gets tired quickly. Needless to say, I am so proud of him! He has started to try to get up on his hands and knees, he is so close! He will stay for a couple of minutes if placed in that position and will rock back and forth, so cute! He also scoots backwards! For some reason he prefers to go backwards instead of forward. He is also getting good at pivoting while on his belly. He is becoming such a big boy!

We have pretty much reached the belief that he doesn't have feeling in his ankles or feet, as he never moves them and doesn't respond to touch or poking for that matter, but he will bear weight on his legs for 10-30 seconds at a time now, and is getting better. The docs say he will walk, but he does things in his own time, so I just need to be patient and enjoy him while he is still little.

So far still no cathing, but he has another urodynamics test and renal ultrasound scehduled at the beginning of October. I'm hoping and praying that things are good!
He still eats stage 2 baby food, but is learning to pick up cereal and freeze-dried yogurt snacks. We are gradually introducing some stage 3 foods as he has been gagging more frequently. This worries me, but I'm trying not to let it freak me out.

Tanner had an evaluation for Occupational Therapy, but it was determined that he is above or where he should be for his age group, so no OT for now. But we will be doing another evaluation in about 6 months. He has Physical Therapy once a week, and since we got a new Physical Therapist... the difference is amazing! I am so happy with the new PT! It's amazing how big of a differnce having a PT that is familiar with Spina Bifida makes! I am so glad I stood up for what I knew my son deserves! We also have a Develomental Specialist come twice a month. Appointments have slimmed down considerably, its nice to just enjoy my boy!

Tanner loves to play peek a boo, is learning to wave bye-bye, and love to shake his head back and forth, and nod his head up and down. He is learning to imitate things we do, and it is so cute! He is also really into exploring everything around him. He loves books, he can sit and look at the same book for minutes upon minutes. His other favorite toy is this old tv remote that his dad gave him. It's amazing how much he loves that thing! He laughs at almost everything and is such a funny kid!

Tanner has taught me to enjoy the little things and not dwell on things that I cannot change. He has taught me to love with no boundaries and that life is a gift no matter what!

Anyway, I think I've written a novel. I'm so proud of my son & things are better than I could have ever imagined that they would be!

I still have my days where I am mad and sad about how things are, but with each day it gets better.

Saturday, July 18, 2009

In a rut






So things have been really hard for me lately. I'm in a sort of rut emotionally and not sure how to feel better. I feel like my son Tanner was short changed in life due to being born with spina bifida.

I am frustrated with the fact that all the prgrams that I was told he would qualify for before he was born, he has been denied for except for EI. We are currently only getting physical therapy though EI, and the therapist that we have is a bit lazy. She does the same thing with Tanner each week, and I don't feel like Tanner is really getting anything out of the sessions. That makes me feel like I'm wasting my time sitting through the sessions. I have voiced my concerns to my case worker, but nothing happened there either... so I'm not sure what to do.

I am the most frustrated that Tanner got denied for the medicaid waiver. Without that he cannot go to the spina bifida clinic. And we are having to pay for all of his braces cause our private insurance doesn't cover any durable medical equipment. I get so jealous and envious of others that qualify for programs that Tanner should have, but got denied.

I'm having a hard time accepting the fact that Tanner has no feeling in his feet, and is behind in development due to all the surgeries he has already had in his short life.

How do I get past all the sad & tough feelings and feel better about my life with my gorgeous son?