Lilypie - Personal pictureLilypie Premature Baby tickers Lilypie Angel and Memorial tickers

Saturday, September 17, 2016

Almost one year!!!

I can not believe it has been almost one year since my last post!!!! I just reread my last post and holy man, I have the EXACT same feelings today as I did a year ago. I have been having ALOT of mommy guilt as we ride our roller coaster here. For those of you not on my facebook here is alittle recap.... Brielle is super super tight. She should be at 90 degrees and she is a -30 degrees on her left. She is completely walking on her tip toe which has caused her ankle to contracture and she has no movement. Her hamstring in that leg is a 2/4 for tightness but her Ankle is a 4/4. She has little to no Achilles tendon left because it has shortened that much due to no range. We seen a new DR yesterday down in Milwaukee. Her previous dr of 4 years was just rubbing me the wrong way. She broke a needle off in Brielles leg 3 months ago. I have expressed to her that I do no believe botox is working and I want new interventions. She kept saying "O lets just try it again." No enough. She would literally just stab her leg and bend the needle all around, breaking it and causing so much pain and anxiety to Brielle. I had enough. We switched drs immediately thanks to another CP mom in our karate Class. I LOVE LOVE LOVE Her! Brielle had little anxiety and actually climbed up on the table by herself with no bribing. I truly think she could sense this womans compassion and went with the flow. Dr Zvara did ALOT of past history with us and talked about everything in great detail, something we NEVER did with the other dr, and then had her walk quite a bit and did ALOT of measuring. She flat out told us that botox is usually a great route to go, but given Brielles history and it not working over the last year it was not a good fit anymore (Havent I been saying that???) She said that with her no range of movement in her ankle anymore that botox was completely pointless. She did say that IF Brielle would have been a good candidate for serial casting again (She is not because of her pain disorder and going down twice before its not a good option) botox and casting paired together would have been her first choice to see if it would correct her. So with that being said and not an option for us anymore she said that tendon lengthening is our best bet. I asked about SDR and SPML surgery and all 3 doctors agreed it wasn't right for her because she is primarily a Left "problem" If her right was also a concern then SDR would be a no brainer. Dr Zvara also did let us know because she wanted us to know every option available that in the hospital they have done only ONE procedure that is exactly like SDR where it strips the nerves but instead of in the spine it stripes the nerve right in the leg where she has her targeted problem. She said that she wanted to let us know it was an option and has been done recently to one child, but the child hasn't had enough time to prove the results so its not a surgery she is comfortable just waving around right now. We go in 2 weeks to see our orthopedic surgeon, Dr. Tassone, that actually works with our Pediatric Rehab Doctor, Dr. Zvara which I was excited about because she said she would talk to him the Wednesday before we see him and fill him in on what we talked about. She also said that Having botox paired with the tendon lengthening surgery proves to have faster healing time and she would be happy to come down to the operating room and administer the botox while she is having surgery. NOW our concern is the pain disorder. Her pain disorder is presented at any point that she is immobilized. It has been shown to arise in times of surgery and casting as we know it affects Brielle. We have a GREAT team with us and we are going to discuss allowing her to be immobilized solely with braces and not the cast if our orthotist makes a solid AFO. Brielle previous Birth to 3 PT has the same disorder Brielle has so Ive gotten some great info from her and names of meds she has taken before and after surgery to keep the pain at bay. So.....That's the surgery update. I was having some great mommy guilt before yesterdays appointments. We first met with peter to get brielles new orthotics. I didn't even say anything to him and he said its hard to not have guilt as a parent or a therapist. He said ive been doing this for 29 years and the first 5-7 years when his kiddos needed to have surgery or wasn't progressing like he had hoped he would feel extremely guilty. but then he learned that wasn't the case. He said we have done all we could for her and sometimes this is just the fate. I do feel the guilty every.single.day. as I stated in the post before this one last year. I feel like I failed her at some point. I should have switched Drs 3 years ago when I had that gut feeling. Maybe we skipped too much therapy. Maybe we didn't do enough at home stretching. Maybe we should have forced her to wear her braces that much more instead of letting her be a kid. Maybe we weren't aggressive enough. no one will know. no one will ever be able to tell me. What I do know is Weve done our best that we possibly know. What I do know is this kid is so loved but so many people who have never even met her. She is determined and she is driven. Dr Zvara even said she is a kid who doesn't slow down and doesn't give up and we just need to fix the one leg that's slowing her down. So that's what we will do. In the meantime, Brielle started Karate in June! She LOVES IT! I never would have thought of karate! It is some pretty great therapy and she doesn't think of it as therapy! Win win for mom and Brielle! It also teaches her self discipline, respect, courage, and has built her muscles up!! Her balance in better, her core strength has improved and the little turd has definition in her arms! AND she did all but 2 of the monkey bars at the park last week!! And even tho her hands were hurting her she was determined to finish those last two bars by herself. She did! Brielle has started full days of Kindergarten. She loves it. Her school has been great with helping adjust her and help her be as "Normal" as her peers which I love. Also to add to our plate of fullness, Dad will be having back surgery. I'm peeved to say the least that he should have had a date set by Wednesday last week and still does not. This girl will be on the horn Monday! Ive never had a doctors office take so long to give us a date for surgery!! I get that his surgery is more complicated because hes having the cage put in so they have to have a nerve doctor there too so they need to coordinate 3 schedules but really 5 days!?! In the mean time he keeps popping those pain meds and still working and being a trooper!!! Josh and I are also going thru some personal struggles that we will get thru but incredibly difficult. (WE are Ok!) Please say a prayer for our comfort and healing. So please say an extra prayer that both surgeries go as smoothly as planned! We know all too well the power of prayers!!!!