The waiting game

God is really showing me how to learn to be patient over this past year and will continue to do so. Spina Bifida is a tricky thing to say the least. No 2 kids cases are alike and each kid does things just a little differently than the next. Yet they all get treated for bascially the same problems. It's so weird. But i try to do my research, know my medicines, know my medical terminology, know the latest medical history, ect..but yet i am still never satisified leaving the numerous doctor appointments. But then I realize I am putting my trust in people of this world to take care of Arwen and not the Lord. I can do as much research and take her to a thousand doctors..but ultimately they are not in control of her little body..God is! What a joy that is!
I need to daily remind myself we are not of this world.
Well to add to that..We went to her tube, stomach, and braces follow up yesterday and overall they were so impressed with her weight gain, cleaning out, and movement.

She will have to stay on the NG tube for at least another month till her next follow up. They want her to be drinking at least 30 oz of fluid (mainly water now since she is gaining weight) so that the chronic constipation will stay away and will help her meds work properly. Since we can only get 10-14 oz per day by mouth right now..I am scared it's going to be a longer term problem. We are praying now that she is cleaned out she will want more by mouth in the coming days.

Sorry TMI but she has been constantly losing bowel since birth and continues to do more now since being cleaned out and on miralax..so it looks like it is confirmed she will never be able to control it. We figured as much since she can't control that area anyways. But now it's just a mattter of trying to help stop it be so frequent through her new bowel regiment which in turn will hopefully allow to her drink more on her own.

Ha so now she has a hinged knee brace on her right leg, afo dynamics from shin to feet, plastic braces to protect ankles and feet, and shoes..but now she is not only turning her right leg/foot in from knee but also hip..so have to add back the derotation straps. all for a tiny 1 year old..way to much work. So I am praying her new PT will be able to shed some light on this train wreck before she gets her walker evaluation next week.

We also found out her right leg is 2 inches longer than her left leg..so looks like her hips are out but not sure how to mange that without chiropractic help. Hoping that's another thing her new pt can help with. And they said it looks like she has shrunk a few inches over the past few times...hmm not sure the deal with that.

We are going to go get a 2nd opinion on everything with her pediatrician whom we love this friday. Just to kind of get his thoughts on the tube, weight, drinking, bowels, length, and high blood pressure issues.

I know that is a lot of info to retain (lol trust me my brain goes in circles a lot) but that's the new update for now and hope we get a little break from the hospital for a few weeks to catch our breath :)

Thanks for your contuial prayer, love, and support. We thank God for you all and are glad you are apart of little Arwen's life to help encourage her.