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.