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Saturday, November 12, 2011


Quite a bit has happened in the last 2 weeks. Brielles Spio vest fiasco has become easier. I have learned that this vest doesnt go on as easy as her shirt! It is going to take me some time to get "used" to it, so I do it in shifts if I need be. If shes cranky about it, I leave it loose and let her play and come back to tighten it. So now that that is getting better and easier to deal with, Now come the leg braces. Brielle is sitting incredibly well with the vest! In a week, her progress is amazing! Its not perfect, but its coming along quite well! She is starting to stand alot longer by herself! While Physical Therapy was here, Lisa noticed while standing Bri would dig her toes into the carpet and she is starting to walk on her tippy toes. She is also starting to tighten her right side. Right now they diagnosed her as a hemipalgic but since she is tightening that right side she may be a diapalegic. Its hard to give a proper diagnosis for Cerebral palsy because there are soooo many different forms of it. Like Nurse Ann said tonight, its nothing more than the tightening of muscles and low muscle tone. She doesnt like the CP term :) So anyways, Brielle will be fitted and getting those braces soon. Tuesday we go to Depere, WI to talk with a Pediatric Rehab doctor about why Brielles hips click loudly! Im alittle on edge with this one coming up. I think Im afraid to hear more "things" wrong with my child. After having SO many good therapy sessions, and now it seems like everytime they come its something else they find, Im not sure how much more I can take! I almost want to say JUST STOP! shes perfect! (because she is!) but what kind of mom would I be then? I need to do what is in her best interest and try to give her the best life I possibly can!

Today I had 6 hours of training to prepare me to be a volunteer up in the NICU that Brielle spent 98 days! I took alot from it! And I got to use some of it tonight! (Ill get more into what I got form it later....too late!)

My friend, who had twins just like I did, and lost her son, just like I did. The surving twin was Bris roomate. She recently had a anoter baby. Unfortunately early, which means another NICU stint. She, obviously, is struggling with quite a few feelings and emotions! I totally UNDERSTAND! When I walked back into the NICU, mind you, this was the first time I would enter a POD (Room) since Brielle left 14 months ago, I got pretty sick to my stomach. My heart started beating super fast! Luckily, I had one of the many amazing nurses I knew quite well and she talked me down and had me scrub in the room instead of the scrub station that was making me sick. The smell of the soap. Watching the 2 people ahead of me scrub in, Like I had done HUNDREDS of times before, signing in and taking a name badge, like I had done HUDNREDS of times before, picking up the phone to get buzzed in, LIKE I HAD DONE HUNDREDS OF TIMES BEFORE! was alittle much! But I had to do it. I had to do it for my friend. I had to do it eventually, because I signed up to be the volunteer. Lots of moms and dads and families need me eventually. And I kept telling nurse Ann that, I gotta suck it up, but she was wonderful about it (as she always is so positive all the time!) and said, No you need to take time to get back in it and make baby steps. She knew it was a huge step to walk back in there! Anywho, I made it to her room and she was holding her sweet sweet boy! Full head of black hair! AH! So in love already!!! She is truly blessed!!!! Such sweet, sweet, people! We met in that same building (different room) but same circumstances. And here we were AGAIN. Same emotions, feelings, smells, cords, beeps you name it. BUT we have been down this path before. She is strong, even tho she doesnt think she is. SHE.IS.STRONGER.

Before I went to see her, I dropped something off for her (not knowing I'd be seeing her later, but it was nice for the nurses to see Brielle!). I was telling one of the nurses how a mom reached out on my NICU group I started on Facebook for the NICU. Teri told me that mom was actually there at that moment. I got alittle nervous, because I didnt think I would be talking to anyone, and that wasnt my intention when I brought it up, but hey what the heck! This mom and her husband came outand we introduced ourselves and shook hands. I got her story and told her our story! Her son was born at 28w5d at 3lbs 1oz. He was a pretty sick baby but things are slowly turning around! And boy Josh and I know that all too well. This couple is SO positive tho and you can feel their love for their baby just in their eyes alone. They truly are amazing. I am a FIRM believer that your baby can feel your emotions. I tried my damnest to not feel sad or frustrated around Brielle (and do to this day!) because I knew she could feel it. I knew it just by watching her numbers on the monitor. She would desat and need more oxygens etc. It was really weird. They can feel the lightest touch of your finger and know your MOM. I know their little M can feel their love. Can feel their hope and admiration for that little guy after only a week! Keep up the great, positive attitude L & R!!!

All in all, its been an extremely LONG day! 6 hours of training and 2 trips to the NICU, BUT I do have to say, talking to L and S was pretty theraputic for me! ( I use just the first letter of their name to respect privacy!) It helped me realized alot of MY feelings, let me share somethings I learned today at my class, and I got to meet a new amazing mom, and reconnect with a wonderful, amazing mom that I NEED to spend more time with :)


  1. Brielle is perfect in our eyes!!! And always will be!!! We love her soooo much and she has made such great progress and will continue to do so because that is Brielle!!! There is no stopping that girl! She has put alot of smiles on my face lately that I needed!!! She is beautiful, a blessing, a miracle and she is ours!!! We Love Her! I am so proud of you and Josh, she would not be this far if it was not for you two and her angel Ayden! You have helped her get where she is today! It takes alot of patience and time but she is soooo worth every minute of it! You and Josh should be very proud of yourselves! Amber, I am so proud of you for doing the volunteering in the NICU you have and will touch so many lives! You are an inspiration! It has to be an awesome feeling to be someone that special and to help others that are going through what you have already been through. You and Josh have been through so much with Breille and God knew you could handle it! You are an amazing and blessed family! I keep thinking of Uncle Todds word to me with Rodger..."If it doesn't kill you it makes you STRONGER" I will never forget those words and it's the first time I ever heard them! We are STRONG and we are FAMILY!!! We are here to laugh with tears of joy and cry with tears of sadness or frustration and support each other! God has blessed us! We Love you Josh, Amber and Brielle and ...our Angel Ayden:) Love, Rodger and Cindy

  2. Amber...I just read this post. It was so great to meet you as well and I have to say Rob and I were so blessed to have the opportunity to talk to you and Josh. Miles has had a rough road, but its people like the two of you who have helped us get through some dark days.

    Brielle is a precious little girl and her brother is a precious angel. Everytime I go in and see Miles and I tell him he may have a guardian angel named Ayden by his side and he should take comfort in knowing he is beside him to get him through these tough days.

    I truly believe that the guardian angels beside Miles have helped get him through these tough days.

    Thank you so much for all of your support...thank you just doesn't seem to be enough!