Arwen ROCKED clinic

I want to thank you all again for praying for Arwen during spinal defects clinic this week! She did awesome! She practically ran around the halls with her walker and loved stopping by each room to say hello to her fellow sb friends. It was so super cute! Mommy and Arwen loved having daddy there to help entertain this little munchkin. I actually got to pay attention to the doctors and nurses when they came in for once lol.
We were sad we didn't get to visit with our friends Heather and Gwen but we did get in a quick hello :)

Ortho-

Well this was a difficult meeting because the surgeon wasn't the most personable guy (big surprise, right? lol) But after talking to him about Arwen's internal rotation he decided that there was nothing on his part that could be done for at least another year while she grows and changes. But if she stays this way then she will for sure need surgery on either tibia and or ankle/foot to help correct it.

Physical Therapy- 
The clinic pt was very helpful and a good balance to what the ortho was not seeing or discussing. She agree Arwen had major internal rotation issues on right side, but did see the left side starting down the same path. But they all couldn't figure out a good solution other than thera togs (which don't stay on Arwen since she is so active) because any other bracing would put too much pressure on other joints and not fix the problem fully. But she was very impressed with how strong Arwen's legs are, how great she got around in her walker, and her determination to figure things out that are hard for her.
The pt did verify that she doesn't have any dorsal flexsion (move her feet up and down on her own) and we really thought she could move her toes on her own while holding her feet but she then informed us that it was not her controlling it but more of a reaction to her moving her upper body while we were holding her feet.
She asked us how much she could feel in her legs and feet..and honestly we think it changes weekly and is so hodge podge that we really can't tell for sure. We look forward to her being old enough to tell us :)
Rehab- 
I really like her rehab doctor. She actually takes the time to answer questions and work out what's going on with Arwen instead of putting her in this sb box. (You SB mammas know exactly what I mean by that lol) She did agree with ortho and pt in the sense that we really don't have options other than togs for now to help her rotation. After many hours of discussing, consulting, and watching Arwen they all just said she is in a weird inbetween age and situation that they don't know how to help her more than what she is already doing. So that is good but bad. Good because we can keep trying new things to keep togs on ,we know they do help for the time being, and we are already on the right track for the time being.
Bad because they do not stay on, still trying to figure out if a new pair would be worth the money.
Rehab also deals with Arwen's overall bowel health. We are on a better track since she was hospitalized in March for being backed up..but we still can't her to stop leaking poo almost every diaper a day even while on a cone enema/fiber regiment. Just some more trial and error with no sphincter control is just another fun part of the sb journey.
Bladder/Kidneys-
Her urologist did confirm what we thought which was that her pressures in her bladder were dangerously high and she has a spasmatic bladder which doesn't allow her to release on her own all the way. So she just leaks small amounts of urine all day until she is cathed to release the full amount. So unfortunately we had to up the ditropan to help release so much pressure and looks like cathing is a long term thing. But I am glad there is something to help her pressures, chronic uti's.We will go back in 6 months for another urodynamics study before clinic. AND hooray her u/s of her kindeys looked GREAT and she doesn't have any reflux..Praise the Lord!
Occupational Therapy-
Arwen doesn't really need OT to come in but eh they do and its usually just the same stuff each visit. She doesn't eat they way she should and doesn't drink enough. But thankfully this time they were happy that she has made some progress since April. Baby steps- haha! She at least drinks more on her own since April and she is trying sippy cups rather than the bottle. And as far as not eating certain foods..well come on she is 1 :)
So I am not that concerned with food..more just not drinking enough on her own.
Nutrition-
Can I tell you I about leaped for joy when we had a new nutritionist walk through the door?? I appreciate that the other one tried helping in the best way she thought fit..but when you talk to me like I don't how to care for my child than I get a little grumpy.
The new nutritionist of course gave the "she has gone down on the weigh scale" speech and should be drinking more speech but was really polite about it all in the end. She didn't throw information and doubt in my face and took the time to discuss options which was refreshing.
Neonatologist-
She loves loves loves Arwen and we love her just as much. Doctor Robertson really takes the time to look at Arwen as a whole and tries to give advice. She is trying to push NG tube again but thinks we should do it on weeks she doesn't drink enough milk or water and then take it out when she does..well I don't agree because that would be a nightmare since her drinking patterns change day to day. And really she doesn't ever drink milk no matter what. She takes vitamin supplements and eats foods high in calcium to make up for that.
Neurosurgery-
I was so bummer that I forgot to tell the clinic nurse beforehand that we wanted to talk to nuero since Arwen has been complaining of headaches where she shunt is. She normally sees a different neuro who works at another location, so we usually skip neuro at clinic. But after talking to her other docs at clinic they think she should be okay if she isn't complaining on a regular basis. So we just pray that it resolves itself and doesn't turn into a shunt malfunction issue.

 

The sb journey is a long, bumpy, joyous, and miraculous ride that we can only get through because of the sacrifice that Jesus made on the cross. We try to thank God every day for refining us and making us more like Him through the tears, pain, laughs, smiles, and doubts. He is our Rock and Salvation. Our prayer is that Arwen will do the same as she gets older. Thank you for your continual love and support of our little joy!

Please come help support Arwen and her friends during the cupcake donation day

http://www.facebook.com/#!/event.php?eid=233938539975717