"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!

Saturday, March 14, 2009

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.

Saturday, March 7, 2009

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!

Tuesday, December 30, 2008

Finally going Home!


We finally got to bring home our little man on 12/29/08. That was the longest 2 weeks of my life!
We are cathing every 6 hours during the day, and letting him go 8 house at night. He is so cute even with a bandanged head, back, and casts on both legs.

Now to adjusting with a lot of feedings, and no sleep!

Just happy to be home.

Friday, December 26, 2008

Tanner's first Christmas

Christmas for us this year was way different than the "norm" due to Tanner still being in the NICU. We went & exchanged gifts with family in the morning, and spent the afternoon and early evening with Tanner.

Tanner got his VP shunt put in Yesterday, and the surgery went well. Tanner now cannot lay on his right side for the next 3 days, so he is down to his left side or belly. He can lay on his back for 30 minute intervals every 4 hours now, but that's it until his stiches come out in 2 weeks. It is hard to lay him on his belly due to the position his legs are in, in the casts!

We also found out today that cathing has been started and we will have to learn how to do that as well! Most likely 4 times a day to start. That I have to say, is one of those "presents" that you wish you could exchange but have no way of doing so! I'm actually not as upset about the cathing as I thought I would be, at least not yet. That may change when I actually have to do it myself! Ray is really leary of learning how, but he understands that he has to learn to do it, so he can do it if needed. Like when I am not home and such. We have a meeting with the Urologist tomorrow morning to discuss things.


Tanner got the cutest Christmas outfit, but he can't even wear it! He is still a "diaper baby". So we layed it on top of him and took pictures anyway! It says "Who needs Santa, I've got Grandma"

Days for me are seeming to get better, but I still cry a lot! As the days go on that Tanner is still in the NICU, it gets harder for me to leave him here. I would stay here 24/7 if I could, but I know I have to eat and get some sleep. Why do doctors always say well maybe he can go home this day, or that day? And then that day comes and they say, "Well, looks like he may be able to go home in 48 to 72 hours! UGH! I just want to scream @ them!

Ok, I'm done with my ranting.... at least for now!

Hope everyones Christmas was better than ours was!