Tanner's 1st Christmas @ home!

Christmas 2008 was spent in the Phoenix Childrens Hospital NICU, due to having a shunt placed on 12/24/08. So technically that was Tanner's "1st" Christmas. But I don't look @ it that way.
Christmas is fun..... do he look like he is having fun??




He wasn't even able to wear his Christmas outfit, so he used it as a "blanket" instead. :)



It says "Who needs Santa, I've got grandparents!" Ain't that the truth!!

Ray & I gave Tanner a "Sit N Stand Vtech Train...... but as you can see below he wasn't too sure of it!

Tanner received many gifts.... clothes, toys.... but he was interested in other things! Go figure!

Like Maple's bed & toys! This is so much more fun Mom!

Also ... I think this tag tastes better than it looks!

All in all.... Christmas was good to us in 2009. No hospital, no surgeries... just having our little man @ home and enjoying eachother. Wish we could have gone to Utah, hopefully that'll happen in 2010!

Merry Christmas!

Tanner's 1st Birthday

Well, the day has come!

My little man Tanner turns 1 today! I can't hardley believe that its that time already. Time sure has gone by fast! I'm sure I'm way more excited about it than he is! :)

We had family over and the cousins got to decorate their own cupcake. I made a large muffin size cupcake for Tanner. I stripped him down to his diaper, and put him in his booster seat on the floor. At first he wasn't quite sure what to do with the "huge" cupcake I set in front of him. But he got the idea once I put my finger in the whipped cream and stuck it in his mouth.

He had fun opening gifts with Mommy too! Tanner really got into tearing up the wrapping paper! It was fun to watch him get excited about it!

Tanner ended up receiving a ton of fun new toys, books, and clothes. Thanks everyone!

Although I do have that bit of sadness inside, remembering all of the things we've been through the past year. But there is more happiness than saddness, because I have so much to be thankfull for. Tanner has already taught me so much, and he is so fun. He has so much courage and strength, and has shown me anything is possible if you want it bad enough. He is awesome!

Insurance Blues

So my work changed insurance and ever since all of Tanner's stuff has been getting denied due to the insurance stating he has a pre-existing condition. I have mailed, faxed, and scanned & emailed the certificate of coverage showing that Tanner has had insurance coverage since he was born, but his claims are still getting denied. The whole time I'm thinking, "how can he have a pre-existing condition with no lapse in insurance coverage?" And on top of that, he was born with his condition!

I am now getting bills and calls from Tanner's pediatrician and specialists because the claims have not been paid or have been put on hold. It's so much stress and so hard for me to handle!

At this point I'm at my wits end, and don't know what to do. Tanner just got fitted for new braces and the pre-authorization for the insurance payment was denied, so Tanner now has no braces to wear because his current ones are too smail, we can't afford to get new ones without insurance. I'm just ready to scream & cry!

I don't know what to do next to fix this, and Ray is ready to get lawyers involved. I only have so much time in the day to make calls and to appeal things. I did find a complaint form online that can be submitted the the Arizona state department of insurance commisoner, so I may be doing that if I am not able to get this resolved.

Ahhhhhh.... if its not one thing its another it seems.

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.

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!

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!" :)

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.

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!

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.

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?

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.

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.

Shunt revision

Well.... Tanner is out of surgery and is sleeping now. They moved his shunt from the right front of his head to the right back. It is less noticible now. The only crappy thing is that he has 3 incisions on his head and 1 on his tummy, just next to his belly button. He looks like he's been through a war..... in a way he has.... poor guy has had 5 surgeries and he's only 4 months old!

The nuero said that the surgery went well. He moved the shunt to get it away from the location that the cyst had formed before to help it not come back. He hopes that the cyst will not grow back, since cysts are rare... but there is no guarantee. I am thankful that he is doing good so far, and hoping that this is the last revision for a long time!

I'm in for a long night again in the PICU, definitely NOT one of my favorite places to be! I wish they had a more comfortable bed, instead of this stiff couch! But at least its only for one night! Thank goodness! They say we should be outta hear by tomorrow morning or early afternoon!

Since its so close to Easter, Tanner got a little Easter basket! It's got a few cute items.

A lot of feelings

So here is what has been in my head for the last few months:

After Tanner was born, naturally I was less than happy of the fact he had Spina bifida, but we had had several months to get used to the idea, so we were just so excited over every single wiggle and wet diaper.

Now that sense of intial relief is past and I am just pissed and sad over this whole thing. I sit through physical therapy, clinics, and many many doctors visits, thinking I can't believe this is my new life. We have had 5 doctor's appointments in the last 5 days and 1 surgery. I sit and watch other babies kick their legs, move their toes, and start to toddle around and I wonder will my son ever be able to do that. Needless to say I am scared to death that he won't!

I hear other mothers with uncomplicated children complain about things that seem so trivial to me, and at times I just want to smack them, or tell them not to worry so much, because it could be so much worse.

Now don't get me wrong, I love my baby boy and he brings us so much joy. The wait and see just makes me crazy.
And a big part of the frustation is Tanner is deceptively such a normal baby. Everyone keeps coming up and exclaiming about how God answered all our prayers and how great he is doing or they ask if physical therapy is making him regain movement and I think, he looks normal, because he is not trying to walk and is wearing a diaper right now. We don't know yet, if our prayers are answered.

I hope that things will get better as he gets older and I'm able see his skill level and I can picture what his life will be like. Someday I hope when I hear the words Spina Bifida, I won't cringe anymore. I also hope that one day I won't try to find a reason why Tanner was born with all of these challenges, and I can stop blaming myself for it. I know that these things just happen, but I still wonder if I could have done something to change it.

I'm not saying all of this to have anyone feel sorry for me. I'm just clearing my head.

I try to always wear the happy brave face, but inside right now, I am not so happy or brave.

Getting Big!

Tanner is getting to be such a big boy! Weighing 15 pounds now, we call him our little chunky monkey! I can't believe that he is going to be 4 months old on 4/15 already! Time sure has gone by fast! After the 15th, I'm going to try to start feeding him rice cereal... that should be interesting!

Tanner had a followup urodynamics test today to check how his bladder and bowels are functioning He passed with flying colors! Uro said that his bowel and bladder contract normally! So we still don't have to cath! I'm soooooo happy about that! We don't have to go back again for 6 months! At that time he will have another renal ultrasound done and we will go from there! I'm so happy!


Tanner's shunt situation gets rechecked on Monday, If things still look good, we may be on the way to no longer needing the shunt! I'll have to update later next week. Next Thursday, Tanner gets his hips and feet checked again, and then on Friday he has a vision test. His pediatrician recommended a vision test, cause his left eye seems to wander sometimes. I'm not sure what to think of that, didn't really undersand what she meant. But we are going to a specialist, so I should get more information.


So needless to say, we are going to be busy next week with appointments! Sometimes I wonder when the appointments will ever let up! But I know it will someday.

Meanwhile we are trying to get ready to move into our new house! Just closed on it last week! It's definitely harder to move with a baby!

Tanner Update 3/14/09

Tanner is doing so good! He is 3 months old already, weighs 13 1/2 lbs, and is 26 inches long! He is headed to be tall like his Daddy!

He had a hip ultrasound & a ortho appointment Thursday 3/12. His right hip has improved alot. The doc was very pleased. He now only has to wear the hip abduction brace at night! I am so happy about that, as it makes things easier during the day, he fits into his car seat way better, and he can move his legs up and down all he wants! Tanner goes back in for a hip xray in 1 month to see if we can get rid of the brace. There really is a light at the end of the tunnel!

He has had the ponsetti afo's for 1 week now. This is one of those braces with the shoes, and the bar inbetween. His left heel is starting to move down, but the right heel has not moved. The doc is concerned about that. He already had his achilles tendons clipped which should have helped that. The doc is thinking that the muscle in the heel is too tight as well. He advised me to keep stretching his feet, and Tanner's feet will be checked again the same day as the hip xray next month. If his right heel doesn't improve, we may be looking at another outpatient surgery.

Tanner's gets his shunt checked on Monday, 3/16. That appointment will determine if he still needs the shunt or not! I am hoping for not, but know that he may still need it. I just want the very best for him.

Winward Family update 3/7/2009

Wow! Okay, I'm going to start trying to do updates every now and then! It's hard to find time to do much of anything these days! I'm sure you all can relate!

We are in the process of purchasing a new house! It's one level, 3 bedroom, and 2 full bath. It's about 1400 sq feet, and has a big back yard! We are excited about it! It will be a great place for Tanner to grow!

I go back to work next week, something I am totally not looking forward too! I've enjoyed these past weeks getting to know my son! It's been hard and stressful at times, but worth it in the end.

Ray is still working harder than ever. He is always busy. I think he is still a bit overwhelmed about being a Dad. He needs nudging every now and then. But he is getting it slowly but surely.

Tanner is excellent! He is getting so big, almost 3 months old already! Growing like a weed, weighing in at 13 pounds now and 25 inches long! Such a strong little man! He had his 3rd surgery on 2/6, which was to clip and stretch his achilles tendons on his feet, so his toes wouldn't point down so much. He had his 4th surgery this past Tuesday, 3/3. His shunt malfunctioned and it had to be revised. There was also a cyst growing by his shunt which is very rare. His neuro surgeon told me he had never seen anything quite like it, but not to worry. Yeah right!

Basically what they decided to do was remove the shunt from his vents and put it into the cyst to drain it. From the MRI done last week, his vents show to be draining on their own the "normal" way. His surgery went well, and we were in the PICU overnight! I stayed with him, as I breastfeed. Sleeping on that couch was not comfortable! He was a bit groggy and very grumpy, but I would be too! Poor little guy! He is such a tough little trooper!
In 2 weeks, he is supposed to have another MRI as a follow up. If his vents remain low and the cyst has drained completely... there is a chance that he will no longer need the shunt! I am hopeful of this, but also a bit annoyed! I really wish that they would have waited longer in the first place, before putting the shunt in! The shunt was placed when he was 9 days old and his vents measured only 13 mm.
He got his casts off Thursday, 3/5 and has braces now. You know the ones with the bar inbetween his feet! Makes holding him interesting! He smiles now and gabs a lot! He is so cute! & such a joy!

Our little dog, Maple is doing well adjusting to having Tanner in the house! She was a bit leary at first, but now protects him with a vengence! It is too cute!