"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

Friday, April 10, 2009

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.

Friday, April 3, 2009

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!