winter catch up

I didn't realize I hadn't posted about Arwen since October..what a bad mommy blogger lol.
Well Arwen has had many ups and downs these past months and are so thankful for the Lord's provision through each joyful blessing and trial.

Walking-
Wow can I just say WOW? She is doing amazing. She started walking without her walker around 21 months old and amazes us each and every day. She bends her knees because she lacks strength in her hips/glutes. But she doesn't let them keep her down by any means. Until about a month or two ago she really struggled with her feet and tibia turning in, but I am telling ya what..it is almost gone!
If she wears shoes other than stride rite (they are light weight and have sri= sensory response technology) then her feet will turn in. She hasn't worn braces for about 3 months since most of them were making her tibia/ankle turn in more. She really should wear smo's for ankle protection (she doesn't have much feeling ankle down), but it's so hard to find shoes and braces that work together to help her. She does use her kaye walker for long distance walking, but during the winter we don't walk far anyways.
Physical Therapy-

Arwen is working on stepping up over objects. She usually just drags her feet over something and trips. It makes her use muscles that are not well trained yet. She is also working on stepping sideways and going backwards. It is so weird how a person like myself takes for granted small things like stepping up, squatting, stepping sideways, ect. I sit back and watch Arwen work so hard at these things and am so thankful for therapy and a therapist who cares about Arwen's needs. But I will say Arwen can finally rock a squat without bending her knees inward and that makes my heart so happy and proud!

Urology-
Arwen has battled 9 Uti's over the past year and we were hoping uping her ditropan (bladder medicine) and cathing 4x a day would help that but so far she is still struggling. Uro wants us to do a neosporin flush every night before bed but we have been very unsuccessful with that thus far. So we may be back to suppression meds daily. (low dose of antibiotics) She still isn't drinking anywhere near enough fluids so that could be a huge factor in why she keeps getting uti's. So in the coming weeks Richard and i will be praying a lot on what to do next about that. We will try the ng tube again for awhile I assume, but last time she pulled it out daily almost and quit eating meals. But the other route would be a Gtube and we really don't want to have to put her through all of that. She doesn't have anything medically wrong keeping her from drinking that we know of so we are not sure why she doesn't like it. And trust me we have tried everything in the book with trying to get her to drink.

The kids had such a wonderful Christmas. I love watching them open their presents. We always make Jesus Christ the center of Christmas, but we do let good o'el saint nick pop down to drop off some gifts lol. Arwen was a blast to watch this year since she is old enough to rip off the paper and really admire each gift. She loves decorating for Christmas, opening presents, baking, and tearing it all down. I love making memories with my kids during the holidays. Such a joyous feeling for this sentimental mamma :)







Arwen is getting ready to celebrate her 2nd birthday! I cannot believe that at all!! That first year was a blank haha! She is looking forward to her Dora party. She doesn't even watch the cartoon lol..but is totally obsessed with everything Dora. She wants everything big sis and big bro have so she continually follows them around asking for their toys. So her presents this year are based around that lol.
She has come so far so quick and I just love her to pieces. I am excited for what the next year will bring for her.