4.5 Years WHAT!

Ya'll!! Welcome back!! I feel SOOOOO good to be blogging again. Life has been CRAZY!! Since my last post we added another kiddo to our crazy crew! Croix turned 4 in June is a handful but such a joy to our family! God knew we needed him!! In April 2018 my husband Josh had the widow maker heart attack at age 36. Thankfully he lived to tell the tale! None of his Drs are sure how as his numbers were off the charts, but he did!! 5 weeks later, June 7, came Croix Boy! 3 months after that in September I lost my Dad. My Best Friend. He was my world and I have truly been a lost soul since then. There is not a day that I don't wish he was here to tell me what to do, give me advice, listen to my stupid rants, hang out, come to all the kids sporting events, concerts and just everyday life. But what he did teach me was that no matter what...."Everything will be OK." Thats my ringtone :) Brielle is doing well! She just turned TWELVE in June. Man this preteen stuff is no joke!! Im not sure if the NICU was worse or preteen.....Jury is still out! haha She is scheduled to have Bilateral Hamstring Release (PERCS) On January 17, 2023. Coming up incredibly fast. As you can imagine, my anxiety is thru the roof and so is hers! Blogging has always been my outlet to just write my feelings out and so here I am! I started seeing a counselor for myself finally the end of last year and she also thought it would be theraputic. Over the last year and a half, we have been working with a pulmonologist because Brielle has always had this cough. Gets worse once we close up the windows for winter, but always lingers all year. Our pediatrician finally said, enough and sent in the referral. After several tests and bronchioscopes they still dont know. Fun right. This child has always thrown medical professionals for a loop, so why did I expect that to end? Frustrating as you can tell tho. The bronchs show an increase in mucous in her lungs. They sucked a good amount out and her cough got better for a week or so and then shes right back at it. Increased Nebulizers, hypertonic solution, albuterol and advair. Even done a few rounds of steroids and antibiotics. She fails every breathing test. Which bring me to tomorrow...and my anxiety for the day....Another breathing test. IF she fails this test she could possibly have the surgery cancelled. I am sooooo torn about this. A. She has NEVER passed a breathing test. B. I feel its more technique...and not a true fail (And the Dr has agreed with me.) C. She NEEDS this surgery. D. Safety is obviously EVERYONES #1 Concern. Brielles gait has gotten pretty bad the last 2-3 years. As she grew we knew this would happen and have been doing botox every 3 months and PT to try to delay the progression, BUT we can only humanly do SO Much. He knees are always bent and she walks and stands that way. So her lower back hurts, her legs hurt and often she will crawl at the end of the day and not even want to use her legs anymore. I as a parent cant even imagine how she feels. And I wish more than anything I could take it all from her. But I cant. What I can do is try to get her the best care my heart believes. I have talked with several others whos child has had this surgery or has had it themselves and I feel pretty confident. Brielle is actually having a video chat with an older girl who has CP and had this surgery several years ago. I am excited for her to have someone in her position to talk to and answer some of her questions/fears. Another thing thats been weighing heavily on my heart is another procedure called SDR. I have several friends whos kiddo has done the surgery and have LIFE CHANGING results. This surgery scares the shit out of me, honestly. It goes into their nerves on their spinal cord and takes the spasticity out of her legs. No more botox, no more tight hamstrings. Again, Life changing. It is painful. It is INTENSE. Like we would spend 6 weeks in Minnesota inpatient. I feel awful that I let my anxiety get in the way of this life changing procedure. I know it isnt too late, but if she would have had it, she may not be where we are today. BUT tomorrow is gone, so we need to look forward. It is NOT off the table, however it is better in younger ages. Still when I think of it, I just dont even know how we would pull it off with me being gone 6 whole weeks! Who would take care of Croix 3-4 days a week?? But anyway, I need to get thru this once procedure as her contractures are pretty bad she would need this one to begin with anyway. And once we get her healed, we can talk about other options. Now the fun news! We are adding a 4th bedroom to our home just for Brielle. Right now she shares a room with her 10 year old Sister. Croix can be LOUD (Boys!). With her sensory processing disorder, autism etc she is stimmed out! She doesn't like noise and much prefers to be in her room coloring, swinging etc. So she is getting her own sensory room with an accessible bathroom. She says shes never leaving us, so if thats true she will have her own space! There is enough room to even put a small kitchette down the road if that comes. Im excited to be able to have her own space and an indoor swing. In the summer she LOVES to go outside and swing, but winters here are brutal and she is not able to do so. They just started building her room TODAY!!! Should be completed in March! We are working with an AMAZZZZING Company, Linked Living out of Appleton. Have I mentioned they ARE AMAZING???? Greg and his Dad, Tom are truly sent from god. They are the greatest Father/Son Team I have ever met. They have spent countless hours with us and driving 30 mins out here atleast 5 times during the whole process to make sure we have every last detail nailed down. They travel...and are amazing! Their mission, is to keep families together! So granny pods, mother in law suites, handicap accessible additions, sunrooms...You name it!! They can do it. They will walk you thru every single step and get you exactly what you need! They are incredibly Amazing! Patient! Kind! We are planning on documenting the whole process so I hope to share that once things really go in motion! Anyways, that got long, but I hope to be back with more! It really is therapy for me. Thanks for reading and coming along for this journey!