Tuesday, June 24, 2014
Update on Little Miss. So, we got an appointment with an Orthopedic surgeon today, thanks to Auntie Em. I get Brielle on the bus today, and Josh and I both looked at her and said “Hmm She looks pretty good this morning!” She came home from school and got off the bus pretty much by herself, yet again another improvement. We came inside did some painting, ate lunch and watched the Sandlot til her 230 appointment. Get her out of the car for her Ortho appointment and she asks to walk. I let her as we had some time to spare and she says “Watch me run mom.” I grab her alittle to stabalize her expecting her to fall and the little turd takes off across the parking lot. Not a fast full out run, but a RUN to HER. I was amazed and thought REALLY? I made all this fuss to get this appt on short notice and you go from crawling last night to RUNNING today!??!?!?!? YAY but WTH! So we get to the room and I make her run to wall to wall. Run to chair to chair. Now do a circle. Now do a plank. Now touch your nose. “Really mom??!?!” Yes really Brielle. Im still confused. Help me out here! The doctor comes in and I am speechless. I feel like a horses butt and dont really know what to tell her. Except I dont know this child. I show her my video from last night and show her how she WAS. She did see the problem I was presenting but looking at the child in the room she didnt know her either. So we both agreed that She just really likes doctor appointments and making her mother bald by the time she is 5 and I will call if she regresses. Get home have dinner, she goes running into the living room after giving her dad a goodbye kiss for work and she trips and falls. She starts screaming and crying like she broke something. This went on for a good 15 minutes. Dad got her to walk on it before he cleared the scene but she wouldnt stop fussing. After an hour of telling me it hurt and still whining, not full cry, I got a call from her teacher. Her teacher, who I adore, is super sweet and caring. She had some concerns, and I have the same ones. Shes always looking for ways to help and better the child its just amazing. I told her how I am completely lost and not really sure what to do, say, think or go from here. She was just bouncing off the walls at the specialist doc 3 hours ago, and now shes laying on the floor moaning and icing her foot. WTH! I give and call her old Birth to 3 therapist Lisa, who lives just around the corner from us. She is super super sweet and knows Brielle like the back of her hand. Seriously! She is the one who suggested casting as well. She of course came over right away to look at Brielle. She said that she has no get up in her feet. Meaning when we can just put our foot flat, push up and get up, Brielle has to use her hand to push her leg down into the floor to get up. A lot more work than you and I. Her legs are mush. She has hardly any leg muscles left. So she is tightening her ankles to compensate, she IS the master compensater you knnow?, thus causing her ankles to be tight and turn inwards to compensate. MAKES TOTAL SENSE NOW! No fracture. Just no muscles. Weak little fragile body trying to work way way hard to do things that she has the right to do....be a kid. She also noticed that Brielle had a major growing spurt so her orthodics were small. The toe piece was not long enough so where her toes should have been hiting was back by the foot part of her toes causing her toes to curl up, thus causing pain on the top of her foot due to her foot being pushed up into the orthodic causing sores and probably bruising on the foot/bone causing the foot pain! (hows that for a run on sentence!) She fixed her orthodics so I hope we can alleviate some of that pain until her new ones come on Monday. SOOOOO She said LOTS of strength training. She says “get her in water therapy!” TADA! She starts tomorrow!!! Our goal is to get her into as much water as possible. Tayvah is going to learn to like swimming sooner than later :) Its a good thing Brielle likes water this year, Last year she wouldnt go near it. She would go in that water kicking or screaming, which kicking is a great strength building so it wouldnt be so bad :) Tough love. Just kidding, well sort of. So thats what I got. Atleast it is alittle bit more of some answers. I feel more at ease knowing that this is a weakness issue and not an injury. I do feel awful that it took us this long to figure it out, but I cant take that back now. All we can do is move forward and body build this child!
Monday, June 23, 2014
Brielle had serial casting of her legs one and a half weeks after botox for a total of 4 weeks. May 1-May 28. She was a trooper!! She only asked a few times to have them taken off and it really was not a big deal. We put plastic bags rubber banded on her feet and proped her feet up on dads shoulder or up on a stool in the tub. Then we filled the tub with a little bit of water to let her “soak” a bit and wash her up. That was her baths for 4 weeks. She did so well considering this girl likes her baths! So here we are 5 days shy of a month out of casts. Brielle has REALLY been struggling to walk. Very stiff legged and just this week has started to crawl again because she just cant walk. We have tried epsom salt soaks, heat and ice packs, massages, resting, stretching, water, we just do not know what else to do for her. Tylenol wont even touch it. So today, I went to her therapy, I had to work last week, and I walked in in tears. Miss Lisa and I talked since her new PT has only seen her like this so she doesnt really know what “normal” Brielle looks like. She did however say that she is much worse than last week. Lisa took one look at her and said ya something is going on for sure. She suggested we go to our pediatrician and get an xray for a possible stress fracture. I had 2 appointments set up for Green Bay today (35 min drive one way for us) so I spent the hour of therapy on the phone with the pediatrician, who squeezed us in his schedule like always! Rearranged the new AFO fittings, so we had to make the hour trip back to Green Bay (Which turned into much longer since I was super stressed and went about 20 miles past my exit! Each time!). The Xray did not show a break or a fracture. But from what I understood, they can not see a stress fracture on a Xray. They need to do an MRI or a CT scan. Her pediatrician said that she is definitely favoring the right foot, which is not normal for her usually its her left, and that she will definitely NOT put weight on that right foot so he referred us to an Orthopedic Surgeon who we go see tomorrow at 2. This has been going on for the good part of the month she has been cast free. I chalked it up to her having weak leg muscles and she just needed to gain them back. So keep stretching, keep strength training, keep working at it! It will get better. The last week it has gotten much much worse. A week ago Thursday she was running! Very twisted, but she was running. That lasted 2 days. Then all of this started. She asks to be carried, not like her At. All. Shes crawling. We set her down on her feet and she cries out OWE and falls to the ground. She says all day long her feet hurt her. Its exhausting for her. Its heart breaking for us as parents to watch. I feel like we have exhausted all of our resources an noone knows what is wrong with her. I pray this Doctor can help her. Obviously I dont want anything to be wrong but I also just hope he finds something tomorrow so that we can have a plan and get her pain free. This is noway to live. She has been thru so much already at her young age of 4. This isnt fair. She cant enjoy being the kid that she should be. I got an email from her sweet sweet teacher this morming. Sent me straight to tears. She said she is struggling in school to keep up with her classmates. She also said she is in visible pain. I know. I just dont know what to do! Its serious stuff. Its gut wrenching to watch. But we have to stay strong for Brielle. Crying takes place in the shower. Somehow she realized I was crying because she ratted me out to her therapist lol. She said “My mom was crying like a baby. Like Tayvah.” Gee thanks kid!
Friday, April 25, 2014
How is it possible the last time I blogged was in OCTOBER???????? Holy Slacker!! So where to begin!?! Soooooo much has happened since October! Brielle is still in school and LOVES it. She has made some pretty special friends, Kenzie and Tadan are amongst her "Best friends." She loves riding the bus like a big girl. And she loves doing big girl things in the classroom. She especially likes gym class and music/dance on the smart board. Her teacher, Mrs. Chrissy is AMAZING. I seriously can not say enough about her! We have decided to keep Brielle back in 3K one more year. The reasoning is because of her June birthday, so she will be a very new 4 year old when she would start school again. She also just isn't comprehending what is expected of her quite yet. She is very very nosey and watches what everyone else is doing, even if its not interesting like cutting paper. When they start 4K a lot is expected of them to be independent. And she just is not there yet. She is smart as a whip, but its just taking her a bit longer. Id rather hold her back and have to exceed vs pushing her and having her fail. All of Brielles teachers and therapist have been helping me get her to cooperate more for clinical therapy. She has been quite the pistol in clinical and it is beyond frustrating to try and get her to do ANY therapy for the first 15-20 min of a 45 session because she is screaming, hitting, kicking, arching away from us etc. We fight extremely hard for clinical therapy to be covered and to waste half of the session in fighting has been exhausting to say the least. I spoke with 4 of her teacher/aids and they have been doing great things in the classroom, as simple as a learning lesson about listening to your teachers, taking her aside to tell her she needs to cooperate and it is sure showing!!! The first 2 sessions after our meeting have been GREAT! It is sooo nice to go to clinical therapy and actually see her work and get some learning in! Have I mentioned how much I love her school?? ;) Brielle has been riding her horses yet. She is in love with them and riding. She truly looks forward to riding each and every week. Brielles PT has left her position so we have not had a Physical therapist since April 1st. Our old therapist from Birth to 3 has come back thru the clinic that we use!!!!!! I absolutely adore Lisa L and I have been having some ill feelings of Brielle falling backwards since she turned 3 vs excelling. It has been heavy on my mind and I have expressed those concerns with Lisa. Lisa will now be Brielles therapist until about June, until Country Kids gets their therapist going. Lisa brought up serial casting. We had botox Tuesday and I brought it up to her botox Dr who quickly agreed. She said she is very tight and it is time. May 1st Brielle will be getting casts on both of her legs. They will be the whole foot up to the middle of her calf. She can not take the casts off at all. No bathing. No swimming. :/ I am so very torn on how to feel. I feel awful that my little girl has to go thru this. She never asked for this. It isn't fair that she cant even swim in the summer or enjoy her baths that she loves so very much. But I feel hopeful we are doing the right thing and making her life better in the long run. Afterall, this is so so so temporary so we just have to keep muddling thru! There will be lots of tears I am sure. Lisa reassured me today once she got her hands on her that she is super super tight and she needs to be casted. She said casting will do wonders for her and her balance!! Her balance has been out of control. She falls all the time. She has come home from school and when asked how her day is, she says "Awful." I said how come "Because I fell down." She is almost 4 and I think she is starting to get embarrassed. If anyone asks her if shes okay after a fall she will hang her head and run off or sit there. I have been ignoring it and turning away if I see her do it, unless I see she is hurt obviously. The casts will be taken off on Wednesday and recasted every Thursday until they feel she is stretched enough. The casts will be placed to provide a constant stretch to her tight muscles. So for the next 4-8 weeks this will be our hurdle. But we overcame a huge 4 months hurdle in the hospital. We got this!