"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

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!" :)

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?

Sunday, May 31, 2009

Almost 6 months old!!




Ok, so I know its been a really long time since I've sent out an update! We've been quite busy tying to settle into our new house. It's coming together slowly, but surely.

Tanner is over 17 pounds now and is such a cute boy! He is almost 6 months old! I can't believe it! Time sure has gone by fast! He is showing his personality more as each day goes by, he loves to laugh and play. He is such a busy baby, always doing something. He can now roll over and holds himself up off his chest while on his tummy. He hasn't quite figured out how to get up on his hands and knees yet, but I'm sure he will get it in his own time. He discovered his feet within the past couple of weeks and loves to suck on his big toes. He definitely knows what he wants, when he is hungry and when he is tired - he is sure to let you know. He is turning out to be a lot like his mom, very stubborn! He is a joy to watch and learn from as he grows. Not one day goes by that he doesn't do something or makes a face that helps me to smile and laugh.

Tanner loves going to the sitter while mommy & daddy are @ work. He goes to the same sitter as his cousins, Emily and Allen. Her name is Kristie, she is LDS and has kids of her own. Her youngest is 6, so she takes care of other kids to keep her busy.... or so she says. She does a great job with Tanner and always lets me know what happened during the day when I pick him up. She doesn't charge much, and I love that he is with other kids but in an in home environment. Tanner loves to watch the other kids play! He has become a lot more verbal and tries to mimick the other kids. His new favorite thing to do is nod his head. Once he figured out that he could do it, he does it a lot!

Tanner eats a lot of different baby foods now, and he even likes rice cereal.... but only if its mixed with juice! Ironically he likes vegetables better than fruit. The tartness of the fruit is not his favorite. He really liked bananas, but he had issues with constipation... so no more bananas for awhile! We are not sure if the constipation is due to the spina bifida or just normal baby stuff. His pediatrician said that a lot of babies have issues with bananas, so we will try again when he is over 1 year. I am hoping that it is just typical baby stuff, but I know that it could be related to the spina bifida as well. He still loves to nurse and he loves milk or juice from a bottle. When we feed him baby food or cereal we have to hide the bottle until he eats, cause once he sees it.... he wants nothing else! :)

He has reached the age that he recognizes someone he doesn't know. He gets the panic look on his face and searches for mom or dad. Once he sees one of us, he knows he is ok. It's really cute. He is very aware of others and loves to watch people. He is very attentive and aware of his surroundings.

The best thing happened this past week. I was holding him as he was falling asleep, and holding one of his feet in my hand. He started pushing down on my hand with his toes! The first time it happened I thought I imagined it, but then he kept doing it! He doesn't move his feet or toes ever, and it was thought that he had no feeling in them. Looks like he is going to prove the doctors wrong yet again! Even if he never does it again, it happened, and I felt it!!! That moment was the best & it gave me hope that he will do it again. But if he doesn't, I love him anyway!


My new favorite quote is "Life is not a matter of Milestones, but of Moments". I got a plaque that has it on it and it's become my new motto. Reading everyday helps me to stay positive and not dwell on the things that Tanner may or may not be able to do.

Sunday, May 3, 2009

More fun stuff!

Tanner just keeps getting bigger and bigger! He is now 4 1/2 months old. He weighs 16 pounds now, and is 26 1/2 inches long. He no longer fits into any clothes smaller than size 6 months, and some size 6 months are even too small.


His last surgery was on April 10th for another shunt revision. They moved the shunt from the front of his head to the back. With hopes that this would help the cyst that had formed previously to not come back. It's been a month, and so far things are great! The cyst has not come back, and the shunt is perfoming as it should. We like the shunt better in the back than the front, because it doesn't show up as much.


Tanner still wears his hip brace and foot braces @ night. The feet braces he has to wear for 12 hours in a 24 hour period, and the hip brace 8-10 hours. So we opt to have him wear them as he sleeps at night. His feet haven't responded as well to the braces as they hoped that they would, so it looks like they are leaning towards doing another surgery on his feet in July.


As a result of no braces during the day, his activity has increased, and he is starting to get stronger! He rolled over for the first time this past week, and can now hold his head up by himself. He is also getting good at sitting up assisted. He is getting stronger and stronger each day, and is doing so well! He loves tummy time and is a very playful happy baby! He loves to babble nonstop and is such a giggler!





This past week we also started feeding him baby food. He doesn't really like rice cereal that much, but he loves applesauce! The look on his face after the first bite was hilarious! But now he giggles inbetween every bite cause he is so excited! It's so cute!

Tanner's doctor appointments have slimmed out considerably. He passed his last urodynamics test, and we don't have to go back for 6 months. His shunt seems to be working, go back for a CT scan in 2 months. We don't see his orthopedic doctor until end of June for his feet or hips. So he really just has a couple of developmental appointments and physical therapy which are ongoing. So all in all, things are looking up!

I still get down sometimes that I don't have a "perfect child". But who really has the "perfect child" ? I know that Tanner is who he is for a reason, and its getting easier to be happy with just that. But it's still hard not to get teary eyed when I see other little ones walking and moving their little toes. Tanner has never moved his toes. It's amazing how much we take for granted. Okay, I'm done with my soapbox now.

We went and had professional photos taken on 4-18 as part of a program call The Littlest Heros project. I learned about it at a spina bifida support group that I joined online. If you would like to know more about it, visit their site at www.littlestherosproject.org. Our experience was a good one, fun, and free! Can't beat that! :)
We have received 2 sample pictures which I attached, and am anxiously awaiting a free CD from the photographer with 15-20 more photos on it! I will share once that is received.






We are trying to finish getting ready to move so we can move into our new house this coming Saturday! Moving sure is a lot harder with a baby! It makes it hard to find time to pack boxes! Tanner is a so much fun, but also time consuming! :) Things are coming along slowly but surely. We did get a small setback, as there was an attempt to break into our new house. There was no entry, but we've had to replace 2 broken windows and the back door which got pretty messed up. We in no way believe that this reflects the kind of neighborhood we are moving into. We believe it to be one of the freakish things that just happen.