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Tuesday, January 15, 2013

Update!

I am a horrible blogger lately! Partly, because I do not get on my laptop a lot and usually check in on my phone. Anywho, Things have been chaotic but enjoyable here. Tayvahs torticolis has seemed to subside. She is still being watched but we are just keeping up with the stretching and encouraging her to look to the right as much as we can. She rolled over one day shy of 3 months on New years day! She scoots forwards and backwards. Her therapist evaluated her at a 6 month level as far as rolling, head control, and scooting. This child wants to GO! She wants to sit up all the time and never lay down. She loves her jumperoo and bumbo to sit up and watch her crazy sister run around  She is so alert! The past 2 months have been hell to say the least with Tayvahs colic. Especially the last month, it has gotten almost unbearable. It comes out of nowhere and there is nothing that works to stop her. Friday was a breaking point and I cried with her. She gets so upset and stiffens out and just a squealing cry like she is in pain. A totally different cry from a normal Im hungry cry. SO I asked some other moms their opinions and what to do! I tried gas drops, gripe water, apple juice, colic formula, you name it! I was desperate and would try anything at this point! 2 ideas I got, were to switch her to nutramigen formula and chiropractor. We switched her on sat night late and could tell a difference right!Nutramigen is a meat based formula and not the normal milk based formula. It was SO nice to have my happy little girl back! Monday I took her to the chiropractor! Holy man! Why did I wait so long?!?!? She was out quite a bit in her back and neck. She goes back Wednesday and I am taking Brielle this time too. This Chiro, Jim VerVoort, does adjustments on 0-4 year olds for free. He is the nicest man!! He spent 45 minutes with her and explained a lot to us and was very caring! Tayvah has only had 1 colic crying spell since Saturday! I can.not.belive.it!! For those that don’t fully understand, this child was having a good 7-8 colic crys a DAY. They would last 10-20 minutes and she would just CRY and SCREAM to the point she couldn’t catch her breath. She would turn bright red and stiffen her body out there was nothing to settle her down. My child was in pain and I did not know what to do! I told Josh that I think colic is harder to deal with than the 98 days in the NICU. In the NICU I could step away. I can leave. In the NICU I had others helping to fix the situation. It was ME trying to figure out what to change and how to fix my unhappy baby who appeared to be in so much pain. It was seriously daunting. I felt horrible that I did not know what to do to make her better. And now that she is happy and not crying and not appearing to be in pain, I am on cloud nine! The smiles have been endless. I don’t have to work to get them anymore. I just look at her now and she glows! Brielle learned how to turn the TV volume up to drown out Tayvahs screams. I asked Brielle at the Chiro if her sister screams a lot. She said “YA” lol. Poor kid. Im just so glad she is happy finally! And I hope things with her continue the way the last 2 days have been!!


Brielle got another round of botox today. We were talking 2 weeks ago about how we were not sure if she really needed botox. She looked pretty good. But the last week she has gone down hill big time. The simple things like putting her foot up on the step to climb the stairs, she could not do. She was walking on her tip toes 90% of the time and just could not get her foot flat due to her ankles being so incredibly tight. She has started grabbing her upper legs again so Im thinking the muscle spasms are back and I am thinking about restarting baclofen. But maybe the botox will be enough to loosen her enough where they will go away. Maybe the chiropractor tomorrow will be able to help with that as well. Only time will tell. It is nice tho that she is getting to the age where she can tell me. Ive been trying to teach her what hurt means so she can tell me. Shes getting it down pretty good.

Brielle is the best big sister a mom could ask for. She LOVES to help get her nuk, “cover up” her sister, get bottles, throw diapers away, and her all time fav hold her amongst much more! I love to watch her interact with Tayvah. It is so adorable and brings a smile to my face every single time. Her favorite shows are Full house, max and ruby, dora, and SID the science kid. She can count to 12, says ABCDE and can say some with a song playing. She loves to watch her favorite shows and sing along with them. Brielle and her cousin Johanna start Ballet classes tomorrow night. I think she will love it, but we will see!! She loves to play hide and seek! She is getting pretty clever with her hiding places lately! The other day she was under the dog beds, under the bedspread that she pulled on the floor a bit, and the best was when she went in the closet. She sits so still for a 2 year old and she is so quiet. The closet, I didnt see her go in there (and didnt even know we were playing!) and she scared the crap out of me because I couldnt find her!! She laughs and laughs and hits her leg because she thinks she is just so funny! Which she truly is pretty funny :)  She loves to watch her auntie Kaila kick butt in basketball! However she dislikes the pep band with a passion! (loud noise). She loves to take her doll and feed her and burp her etc, everything that I do with Tayvah. She play Tea party and is really getting her “pretend” stage going. Not a day goes by that I just stare at her and marvel in how far this little has come! I still volunteer at the NICU on Monday night. There are some little ones up there right now and to see the parents going thru what Josh and I went thru 2.5 years ago makes me really count my blessings. Talking to those parents really makes me remember why I am up there. Just to show them how far Brielle has come and what she has overcome and to see the hope on their faces is so rewarding! That is why I do it. I would have LOVED to have someone to talk to. Someone to offer me that glimmer of hope. Im blessed that I get to do that for others, and come home to the miracles in my life.