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Monday, February 13, 2012

been soooo long!

Sorry its been sooo long sincr Ive last blogged! Please excuse my errors as Im on my phone!
Last month Brielle had 16 appointments over 31 days in Janruary! Overwhelming to say the least! Plus add working 2 days a week and one night a week volunteer at the NICU!

Where to start??? I started bring a parent volunteer at the NICU. While I love it, i find it difficult to see all the familys going thru what we lived for 98 days. While Ive been there there have been older babies (28 and up.) If I can help one family, my jobs complete.

Brielle......Brielle is walking more than ever! She is preferring unassisted now vs with her walker. Since my last post, it was discovered that she have the wrong orthodics on her left leg. so I was pretty bummed out by this as I felt that we had just gone 2 weeks and now we were set back once again. then we had to wait another 3 wks for the right one to come in. any who now that that is behind us the new brace is in & Bri is walking really good with that one! She is in a size 2 shoe without a brace on when you put her brace on she is now a size 5 so of course her shoes are really bulky and she is constantly tripping over her own feet. I feel so bad because then she gets super frustrated and starts whining and wants to give up. like her pt says we have to let her out of her shoes to get her confident enough to walk so that she knows that she can do it with her braces off. Easier said than done! plus her feet get extremely hot & sweaty because her feet are so hot in the plastic braces. We ordered her some socks that are close to 30 dollars a pair that are supposed to help keep her feet cooler and sweat away from her feet cool. They are also seamless so theres no "pressure" points! Keep on trucking!

Today one of our many favorite Nicu nurses came over to play with Bri! she took a little bit to get warmed up but then she did not want to come by me when Kathy was trying to leave. It was soo cute! :-)

I am noticing more of "CP behaviors" in Brielle. She walks with both knees bent. She is a very high stepper! When I grab her arms to raise above her head they are so stiff. She cant rotate her arm to put her palm of her hand up. Its honestly heart breaking. There have been more than enough days I just feel like Im done. Do my 10 minute cry fest and pick back up and be supermom again. Noone gets it! Noone understands my pain. I feel I have noone to talk to. It feels my family is in denial so to speak. I feel like Im the only one facing this head on. Im the only one, literally, that HEARS 4 different specialists tell me whats wrong with my child. Does anyone realize as a mother how gut wrenching it is for a therapist/Dr to tell you your daughter needs botox because all the stretching your doing hasnt worked??? Believe me!!!!! I would love to say I have a 1# miracle thats caught up, no disability etc. Thats not reality. The reality is she is a miracle that has a disability that cant be over looked. If I would overlook it where would she be? Not where she is! Just as nurse Kathy graciously pointed out. And another man had to point out her disability yesterday. I had my 16 mo old neice Johanna whos the same size as Brielle. Anyway Hanna climbed up the 4 steps quickly to the slide. Brielle was Still on the bottom. I caught this man looking at me so I looked over. He said "Were taking bets to see how long before she falls and gets hurt." I snapped "WHAT??" He says "well shes slow and wobbly" Now my mama bear claws are out and ready to choke this A-hole, i said "No shes not. She has CP. But thanks!" And walked away. I was crushed because a total stranger is seeing her "disability" and I was upset for Brielle. But damnit she is determined and she tries so so hard at everything she does! I felt like leave my kid alone! Another instance...a little baby walking and he falls. I looked at him as he looked up at me and said good job try again as my 20 mo old is using a walker. His mom asls how old Bri is. I say, 20 mo. She does a double take as kids smaller than Bri are doing laps around her. She says "o. Hes 10 months but a big boy." Now I feel bad because I can tell these parents dont know what to say to me and honestly I dont know what to say back. I dont have it in me anymore to explain to everyone she was a 24 weeker. Then the oooo Im sorry pity comes and I dont want it. Shes doing AMAZING things thus far! I couldnt be more than happy!! Shes so dang smart! Soo happy! So so funny! And shes so cute! I would love to just keep her sheltered and away from remarks but socially and developmentally I know I cant. Itd be easier on my heart.

Botox...I will be talking to Brielle Pediatric rehab Dr about botox in March. Ive been researching and have a list of questions so far. Ive heard such good things about botox and hoping we can do it asap and it helps with limited doses. But only time will tell! Botox will help loosen her hamstrings in her legs so she can sit up straight and not tip over or have her legs up in the air like she does now. It will also help her straighten her legs out so she can walk with a lower step and not have bent knees. There are alot of benefits to it and Ive talked with quite a few parents whos children have had it! There is also lengthening surgery but were not even going there so thats all Ill say! When you get botox tho, its not just a quick fix. My job will get harder! More stretching. More therapy, more time in her braces etc. Sometimes botox will require a cast to be put on after the injection but Im not sure in Brielles case until March. So Ill keep you updated!

Brielle has started walking sideways. She cant walk in a straight line. She always goes to the right. Im glad kathy and Josh see it and its not just me this time! Friday PT Ill be bringing that up!

I have uploaded videos to youtube! Ill work on getting the link! My name is briellesmama

Brielle got a 4 wheeler from us for her 1st bday and we just broke it out! She LOVES LOVES LOVES it!!
She blows (literally) blows kisses. Its sooooo cute!!! She is the love of my life!!!!

I know theres more but my brains fried....Goal is to blog MORE!!!

1 comment:

  1. Everytime I hear that story I just want to punch that grown man in the head. People are so thoughtless and just ignorant. It is sad and I am sorry that you are the one left feeling bad.

    But that little girl is really amazing and she wouldn't be with out her amazing mom! So hats off to you Amber, you are truly an amazing mom. XOXO