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Thursday, March 23, 2017

Update!!

Hey all!!! Oh Man, Its been FOREVER!!! We have a lot to talk about. Blogging cleanses my soul, and I need to cleanse today for sure! So lets see, from my last post way too much has happened and I could literally spend DAYS writing! November 9, 2016 Brielle went in for her first Orthopedic surgery, and her 4th surgery in her life. She had her gastroc tendon lengthened. She was in a cast for 6 weeks with weekly trips to Milwaukee (1.5 hours away) to have a new cast put on and her leg stretched a little bit each time. We have to be super careful with her Chronic Regional Pain Disorder, a disorder where if we aggravate her nerves it zaps her nerves and causes her excruciating pain! They gave her a nerve block during the surgery and I think this helped this time around, as well as the Gabapentin! We were really hopeful that this surgery would be it for her and she would be able to have her heel down and not walk on her toes anymore. She has always been called the "Master Compensator" and definitely is! She walked on her toes IN the cast! We quickly saw that once the cast came off the surgery wasn't successful. I quickly questioned it to the ortho team and they said they felt it was "behavioral" and "neurological." And that lots of rehab would help. We went back for her 3 month check up and it was clear that rehab wasn't working. Brielle had made the comment one day "This is how I walk. I've always walked this way." She said it in front of her Physical Therapist, Alyssa, and we both looked at each other. Because they kept saying to us that it was behavior and neurological it definitely got my wheels turning. Alyssa said to me what does her Neurologist say? And I said we don't have one. That was my first clue like I need a neuro now. And needed to look into this. I also had some concerns about her behavioral stuff going on, so a Neuro was probably a good idea anyway. So of course I reached out to good Ol' Facebook and all of my wonderful special needs friends. I got some names and called Childrens in Milwaukee and they put us on a "triage" list and would call us back (Which BTW they took 2! Weeks to call us! By that time I had already seen Marshfield). I don't wait haha. So I called Marshfield Clinic and they got us in 3 days later! So we get down there and turns out they gave us any neurologist, not the one I wanted. She was OK. She was Asian, which I DO NOT CARE race, but my point is that I couldn't understand 40% of what she said. She was super quiet and I had to piece our conversation together to get the jist of it. She did a physical exam of strength and eyes and her legs etc and she said everything was "normal." She said she would do a MRI if we wanted which I said we did! She point blank said she didn't believe they'd find anything but she was willing to do an MRI if it would comfort our fears. Of course I didn't want to put Brielle thru this, but mama gut just said to do it. So we scheduled it for the following week. Josh had to work the day of the Scan but it needed to be done. There was a snow storm happening the night before/day of the scan and we were expected to get 4 to 8" of snow. I decided at 5pm to head down to Marshfield and just stay the night. we left at 6pm and got there about 8, Brielle and I. They weren't expecting to find anything so I got this alone! Child life was on board which was GREAT! They took her back for her scan and she was calm and cool. 45 min and it was all over. We just had to wait around for the results. We waited over an hour in the small Dr room for the results, Brielle was getting super anxious and I had just texted Josh "Im going to tell them to just call me with the results, as its nothing anyway." And the dr walked in with her computer. She opened it up and said "Well here are the results. I have a couple things to show you." GUT PUNCH! I knew right there and then that something wasn't right. She showed me the PVL that she had at birth. Then she showed me the "Lesion, Mass, possible Tumor." Tumor??? What??? What do you mean a possible tumor? This isn't what we signed up for. How did this go from a heel/toe issue to now a tumor???? My mind was everywhere. I couldn't leave soon enough. I couldn't process what they were saying. I wanted my husband. I needed support. This was too much. They said they needed to do another MRI with Contrast as this was an "Accidental Finding" and they needed to look closer at what they found and we needed to speak with a brain surgeon. Come again? A w.h.a.t??? Okay shits getting real now. I was texting Josh as Im hearing all of these scary words and the poor guy is at work, 2 hours away, not able to get to his wife whos breaking down before his very eyes. The nurses there were GREAT! I told them I wanted to go back to Childrens for the MRI with contrast. They were great helping me sign all the releases and paper work to get everything sent down to Childrens. Childrens called me that same day to speak with me and tell me the got all the paperwork already and that Marshfield was super quick on their end. Monday we got our MRI Date. Now we had to wait patiently (Anyone that knows me knows I am not patient AT.ALL!) 3 weeks til her MRI. Good news was, we would get to speak with the neurosurgeon the same day to get the results. Fast forward to March 22, 2017. Josh, My Mother in law, and I take Brielle to Children's in Milwaukee. I tried to prep Brielle the best we could for what was going to happen. She was calm and OK when we got there. Then we had to sit around in the room for way too long. The longer we sat the more worked up she got. The more anxious she got. She started to cry and didn't want to stay. Finally they came to get her and by this time she was worked up but Josh took her anyway. We could hear her SCREAMING and crying with the door closed a few rooms over. How incredibly awful and I felt so helpless for her. I wanted to run to her but I couldn't. I had to be in scrubs and sign a release or something. They brought her to me and she was a mess. Screaming please let me go home. Im scared mama. Please don't do this. My heart broke in a million pieces. WHY on earth does this little girl have to go thru so much stuff in her short little 6 years of life. Hasn't she endured ENOUGH? WHY HER GOD? I couldn't do anything but Cry with her. My hands were tied. We had to see what this mass, lesion, TUMOR was. We had to. Praying it was nothing, but what if it is? Drs came in the room and said they needed to sedate her. I was urging them to just do it. She was still screaming and crying at this point and I just wanted it to be done so she didn't have to have those awful feelings anymore. They kept wanting to explain to her what they were going to do with the mask and the smelly gas stuff and she wasn't listening. Just do it, Shes had it done, She knows PLEASE JUST STOP THIS! They finally had Josh carry her out of there and help hold her on the table. He said once the mask was on she was out within seconds. Then the long 45 min wait for her to be done. They carried her in and she was so sleepy, but happy! She was starving and I had her favorite cereal in a bag in my purse and she immediately munched on that! We were out of there about 20 minutes after she woke up. Went to Subway in the hospital for lunch and then went to her Neurosurgeons office for the results. Dr. Kaufman was GREAT! He was funny, and explained things so we understood them (With a lot of food terms ha) and not the big medical terms. He said that the Tumor is a Pineal Germ Cell Tumor. We don't know if its benign or malignant. She does have a lot of Good signs. She doesn't have signs of early onset of Puberty, urinary or bowel issues. Her Alpha Beta test came back negative which is great. She has an HCG Test out there that we will get results in a few days. If those are positive we will need to start treating it. If its negative that's great! They are also doing a spinal tap during her surgery April 7th. same above, if its positive we act, if not we repeat the MRI in 6 months to make sure it hasn't grown and go from there. Next Wednesday they meet with a team of neurosurgeons, pediatric radiologists etc to discuss her case and all together collaborate if Dr. Kaufmans plan is the best plan or they should do something else. I will hear back next week with what they decide either way. IF they have to do brain surgery he said it is easy to get too. It will be a major surgery and he said its a tough surgery on anyone, any age. But they have other options like Chemo and radiation before we go that route hopefully. Her tumor is the size of an Almond. 12mm x 1cm. It is floating around in fluid at the time not pressing against anything. But it shouldn't be there. The fact that she has no symptoms is good news. We have no idea what time frame we are looking at. Since she hasn't had an MRI since she was discharged from the NICU, we have no comparison. All we know is it wasn't there when she was born. So how long its been there is anyones guess. A lot of info to digest from yesterdays appointment. I am always told I am "Stong" and know so much. This isn't a choice. I didn't choose this life. I am simply doing what I need to do for my child. Im sure most of you would do the same if god put you in my shoes. I have my days. I am bawling my eyes out as I type this. Ive cried since Brielle left. I try not to let her see me weak. I need to be strong for her. BUT I have my pity partys. These are my emotions and I am allowed to feel pissed off, hurt, upset, angry, happy, optimistic, positive, negative, whatever I want to feel. But just as Brielle doesn't stop smiling, we wont either. We will conquer this unfortunate news as well as every other hurdles shes been tossed. Shes amazing. Shes beautiful. Shes such a joy. Shes smart. Shes Funny. Shes lovable. She will do great things!

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!!!!

Tuesday, September 29, 2015

much needed update

Please excuse my errors as I'm typing on my phone :) Much needed update! And when I am feeling completly alone and overwhelmes this is where I turn too ;) So hang on and ride with me... I just went back and reread my update from Feb! Not much has changed from then unfortunately. Which is what has brought me here. Since Feb, Brielle had another serial casting of both feet done in May. We thought by keeping the gabapentin on board she would be OK and not regress, but she did. She went back to hardly walking yet again. Noone could figure her out. They put her on some tramodol and she kicked it. We had to get her a walker from her former therapist and I really think that helped her bear weight on her feet sooner than the last time. We seen the neuropsychologist who gave us some tools to help us. The first 2 or so appointments I felt really great about the whole process and thought we had something that would really work! Well that didn't last long. She started to give us the same tools our ot had given us (jumping, swinging, blowing, gum chewing etc) and we already exhausted all of those resources. Behavior is back to its worst again. We stopped therapy in hopes of having enough therapy with school but Brielle is now back to tip toe walking. So Thursday we restart therapy and am hopeful after her botox last week that we can get her back down. But with that comes behavior. At the evaluation she didn't want to do anything! Even look at a ball and follow it. I was so frustrated and embarrassed when I walked out of there. The therapist said she couldn't even do an evaluation because Brielle wouldn't cooperate with even half of the test. I've also started to really notice Brielle just can't focus or sit still at all. When we met with the psych in March, she questioned us about medication. That was a huge thing with me as I do not want to medicate her if I can avoid it. So we ordered her oils and an all natural adhd necklace. We did see some results but short lived. We put her on Paxil for anxiety. As I stated in the February blog, Brielle is so anxious. Brielle has to know her entire day and even week. "Mom what do I have today" she asks us about 4x a day. I'll say we'll school. Then what she says. She's always waiting for that D word. If she even hears Josh and I talk about one of her Dr's by name, she knows. She knows what Dr's names are and who "pokes" her. If she would even hear the word doctor she would go into full on anxiety. Even if it had nothing to do with her. She for real feels that she is going to be hurt all the time by anyone that resembles a doctor and was soon feeling it with her therapists as well. So she was acting out. Horribly! Again! Last night while out to eat with my MIL, Brielle could not sit still. She would sit down for one bite. Then up on her knees, then standing up to eat, then she would start to sing a short verse, then we'd ask her to sit again and it would start all over. Then she would need peaches and more drink etc. Anything and every excuse to not sit in one spot. I tried to distract her by asking her how school was and how her field trip to the apple orchard was and she couldn't even look me in the eyes. She was looking everywhere and couldn't concentrate on one thing. That was really my moment of she needs something. There's been 3 times where she's in trouble or being mean to her little sister and I will say you know better why would you do that? And she says to me quote on quote "I don't know mom something is wrong with me!" Talk about heart crushing. To me that's her cry for help. Thus morning was rough. I made the appointment to speak with a doctor. The girls were not listening we were trying to get out the door for school and I couldn't find Brielles shoes and chips for her orthotics and she is crying because her legs hurt and why can't she just wear sandals. She asks me at night why she has to wear two knee high hot Plavix boots at night and why she can't sleep bare foot like everyone else. It crushes me. I just broke down. She instantly started crying as this is not normal and she didn't know was going on. I just grabbed her and we melted. Just cried together. I feel so guilty everyday. 5 years and this guilt still haunts me. I couldn't hold my babies in. Brielle was born 16 weeks too soon. Her brothers not here. All because my body got an infection . Woman are supposed to be able to conceive and birth babies. I wasn't able to do any of that. We needed fertility help. I needed a csection. She had to develop in an incubator and now she is still struggling everyday. And I feel like I can't help her. I am so frustrated and exhausted and I don't know what to do for her anymore. I've tried. I really truly have. Please pray for us that the doctor can help us/her on Friday. I see little glimpses of the sweet Brielle I know she is. Brielle is so loving and caring and always putting people before her. She is so friendly. Everyday that bus door opens I hear 5 kids all yelling "Hi>ii BRIELLE!" the bus driver says she is so well liked. Her teacher says she is the welcome wagon at school. There's just some things that need to be tweaked. This is the hardest thing ever when your child says something is wrong with them. She's not old enough to fully express why or what but she knows.

Monday, February 9, 2015

Struggles to Triumphs

Brielle has had some struggles lately. For the last 3ish months she has been fighting therapy. Kicking, screaming, hitting, sassy mouth! Josh and myself have been at a total loss on what to do with her. We again reached out to her teachers who have helped greatly! We also started some things at home, A stop and go light with clothes pins and their names, Try to stay on green all day. They are not happy when they get moved to yellow and work very hard to stay "Green" all day! We have also started "Chore" Charts for them both. Its nothing major (pick up toys, do "homework", help set table, do good in therapy, get dressed etc. I went and got a "treasure chest" and if they complete x amount of chores for the day they get a special prize. Brielle has also been pretty rude to other people, not just her therapists but they are the brunt of her anger. She says things like "Go away" "Don't talk to me" "Stop looking at me" "Your not my mom don't talk to me" "Don't touch me" "Im grumpy and I am sassy" The list just goes on and on! She is definitely not raised that way nor do we talk like that so I am not sure where this is coming from. I struggled for many months as to if this is indeed typical 4 year old behavior or if its something "deeper." I turned to my CP support group and had several moms tell me that PVL, which Brielle has on the right side of her brain, can contribute to behavioral problems. They also had said that after seeking medical help, it was concluded that their child needs to "control" their environment because they have little control over their bodies. This one was a definite AH HA for me! Brielle is CONSTANTLY controlling everything she encounters! From her little sister, to friends at school, to activities we do, to even mom and dad. She is most definitely trying to control therapy and if its not her idea she aint doing it! Another AH HA for me was at my last and final straw after an emotional phone call with her teacher a week ago, I sat her down and said what is it? What don't you like? Why do you fight therapy SO bad? Therapy is NOT going away for her. Therapy will, unfortunately, be this childs life forever. She said to me "Mom I don't like Lisa." I said "How come? Lisa loves you so much and wants to help make your legs strong. She wants to do such fun stuff with you!" She said "Lisa Pokes me. Lisa hurts me." AH HA! Back story. In December we had a new PT who we had had only 5 weeks. Brielle was doing all of the above, fighting, and wouldn't do much work for him. I was SO excited about this PT because he is older "WISER!" and I felt his knowledge about her was spot on and he had some great ideas for her! Brielle has PT, Botox, OT and horse, all in one day. Josh ended up coming with me to this one because it was so much in one day and we could tag team her. Usually we just go one of us a day. The PT was trying to get Brielle to work and she kept fighting and running away. Josh and myself would try to redirect her back to therapy. The PT did not like this and kept making the comment that we need to let them build a relationship. That isn't going to work. He already set the tone day 1 when he let her get away with the behavior. If she knows you wont make her work, that's what shes going to do (back to the control). He suggested that we waster a whole PT session (Mind you they deny PT more than OT so we fight a lot to get PT approved at all times!!) and sit around a table to build a "relationship". Ya I wasn't into that at all. Then he said to me that I need to stop looking at how she "looks" and accept the fact that she has a disability. I was in complete shock. This all came from me expressing my concern with her tip toe walking. When she is tip toe walking is causing a whole another array of problems for her. Toes hurt in orthotics, she twists her body causing ankle and knee pain, and also hamstring tighting right up that cause muscle spasms in her legs. I was so shocked because I felt, wait a minute. This is YOUR job to HELP her get back down to a flat foot! I HAVE SEEN HER FLAT FOOTED! It CAN be done! I also tried to tell him that she responds very well when her Birth to 3 PT would stretch her and he told me that stretching was not a good idea because then when she isn't being stretched the muscle would tighten back up. WHAT? WHAT?? HUH? I was completely flabbergasted by the WHOLE session as a whole. The last thing he said to me was that my daughter has CP and I need to stop focusing on how she looks. No Im not focusing on how she "looks" Im focusing on giving her the BEST future she could possibly HAVE. I am a FIRM believer that therapy early on in life will get the best results. I walked away from him in complete shock and tears. Our OT ran into me in the halls and could tell what was going on immediately. I explained to her in short and she immediately fixed it, and we no longer see him. Lisa ended up coming into the room with us for botox, which she usually doesn't do but because I was upset and Brielle was upset she came in with stickers and tried to help up soothe the situation. sooooo needless to say Brielle thinks that Lisa will "poke" her and is fighting any and all therapy with her. I explained to her that she will NEVER EVER poke her and she does not need to worry. I also explained this to lisa and she did the same AH HA! It hurts my heart to no end that this child has to even go thru any of this! She shouldn't have to hear the word "Doctor" and have anxiety. Even if she isn't going to the doctor, mom, dad or sister, she is really concerned and doesn't want us to go. Its truly sad. So This past Thursday, after talking to her teacher, I went to therapy with my head high and ready for behavioral changes! My aunt came with me for moral support incase I needed to take that little fighter out of there. We had decided that if she was a stinker for Ms. lisa she would not be able to ride her beloved horse, Maverick. She did GREAT. The last 3 minutes were rough but Lisa said she did improve HUGELY so instead of taking it all away, we took away her ability to "hold" Maverick afterwards. she looks forward to this, but did not get all 5 of her smiley faces needed and.....SHE DIDNT EVEN FIGHT IT! Lisa also took me aside before horse, during her little fit, and said OT and PT just don't feel comfortable billing us for all these sessions when she does NOTHING for an hour and 15 minutes. I 110% agreed and it has been discussed between Josh and I. She asked if we wanted to take a break or what we would like to do. After Horse Brielle asked if we were doing PT. I just tough loved her and said Well Ms Diane doesn't want to play if your going to talk sassy and fight. But if youd like to have and play and be nice we can go. She got alittle upset and said she would be good. I told her one and done. Do good or we don't come back. SHE DID AMAZING!!!!!!! It was SO nice to be able to sit back and watch her giggle and smile and have fun while getting therapy! I really hope this behavior continues!!! I have an appointment with a neuropsychologist in March to see her thoughts as well. Slow and steady wins the race! Another hurdle her teacher wanted addressed was leaving her beloved blanket at home during school. She always leaves it in her backpack and in her locker during school so Josh and I didn't really see the big deal but after thinking more about it, shes almost 5 and doesn't need to drag that around. Her teacher send home alittle "card" with a pic of Brielle and beloved blankie and a cute little saying. Brielle got this card from us if she left without the blanket and then at school she got to turn it in for a chance to take a friend on a ride on the bike! She was so ready to do it this weekend, we had started working on it, she can have it in the car but needs to stay in the car. She got up and was so excited to be a big girl and do this! I was jumping up and down and singing made up songs about it and she was so excited. 2 minutes before the bus came water works turned on and a huge change of heart. I debated but thought nope, control. Stick to your guns and put her on the bus regardless. I had to carry her out kicking and screaming but from what I heard, it did not last long, and she was ALL smiles when she got home for being a big girl! Mom works next school day, so its all on dads plate to keep it rolling :) Brielle played in a Basketball camp in Freedom this past Saturday. She LOVED IT!!! Her idol (AKA Auntie Kaila) Came to cheer her on from the bleachers. Brielle cheers auntie Kaila on 1-2x a week so you could see how "cool" she thought she was being the one on the court! She has another one Feb 14th and 28th. She is definitely our little sports girl!!

Wednesday, January 28, 2015

MUCH needed Update!!!

Hello out there! If theres anyone STILL following GREAT! I know I haven't been on that much to update and IM SORRY! Life has been crazy good! About a month ago, I received an email from a 18 year old girl from Minnesota. Her dad and his now fiancée were in the hospital on bedrest awaiting the arrival of their micro preemie. They came across the name Brielle and while Sadie was researching the name came across my blog. Brielle was born at 24 weeks mid December and is doing amazingly well! Sadie is grateful to have some hope thru my blog which has inspired me to keep going :) Brielle is doing very well! We have managed to stay fairly healthy this winter. She has a chronic cough that stays with her all winter long. It is due to allergies mostly. Every few months they go in an zap it with an oral steroid and she gets better for a while but needs it again. She is just about there needing it again, she asked me 2 days in a row to take her to the Dr. Poor girl. I hate that she knows she is sick and also knows what makes her feel better. She will also ask for her inhalers. Im proud of her for knowing her body and knowing what she needs to feel better! Brielle is in 3K again. Ms. Chrissy is AMAZING to say the least. Brielle has been having some major behavioral issues going on, mainly in clinical therapy. She will cry, kick, scream, and talk VERY sassy to her therapists. We go thru ALOT of insurance appeals and fights as well as spend a lot of money on the therapy she NEEDS and for her to seriously waste the whole 45 min sessions not cooperating what so ever is daunting. I have ran questions by other CP mamas on the support groups I am in and got some great feedback! First was that Brielle has no control over her little body. She was essential born before a lot of things developed and had to learn that on her own. Like her nervous system etc. She has no control over her muscles. So in short, she is trying to control her environment. When I heard that I was like YES!! SO SO SO SO TRUE!!! She not only tries to control what is going on in therapy, but she tries to control our house as well. More so with her little sister than mom and dad. But she is definitely a little "mother hen" even in school! We also got some advice to take her to see a pediatric neuropsychologist. We have that appointment Feb 24th. Brielle has PVL on the right side of her brain. From what these other moms have been saying, PVL can cause behavioral problems, atleast it did in their children. So I am really curious to see what she has to say! Its interesting because she does not act this way at school and when I told her teachers she was a stinker at therapy they both thought I was crazy lol. They could not believe our sweet, quiet, little Brielle was a stinker. So we emailed her videos :) They have been talking with her at school and trying to help us get her back to having fun at therapy. Therapy is FUN! She does art projects, swings, trapeze bars, stomping in a big bin of beans, blowing bubbles, baseball, soccer, ball pit and the list goes on and on and on! There is no pain involved that would make her dislike therapy what so ever. Her therapists are great and at just as much of a loss as we are. We have started a rewards chart for therapy to see if that helps. She has to get 5 happy faces (which she was mad about because she says she is grumpy not happy) in order to hold Maverick (Her horse) lead leash after she rides him. This is the highlight to her day so we are hoping tomorrow she will do better than last week. I have also started a home "chore" chart and they have to complete x amount a day in order to pick from my treasure chest I have. Trying to hold her more accountable for her actions. O and we have a stop and go light in our living room. They start the day on green and if naughty move to yellow/red. That has been a big one. They both do not like to be in the yellow and home life has been a lot smoother! Brielle started with special needs soccer last Saturday. Once again, she struggled with being told what she needed to do. She absolutely LOVES to go watch her auntie Kaila play Basketball and has a special needs basketball day camp Feb 7th, so Kaila is coming to soccer on Saturday in hopes to give her some much needed pep talk :) She is also in Miracle League Fox Valley Baseball come June! She loves sports! I am hoping we can figure out these control/behavioral problems sooner than later. She is the sweetest little girl. So the outbursts she has is totally not like her. She does not do that at home or school. The only other thing I thought maybe might be, is that she gets botox in the same clinic therapy is at so she is anticipating that because she will randomly ask me "Mom no doctor? No pokes today? Not even talking to a doctor today?" So I know its on her mind. Poor kid shouldn't have to fear doctors, but shes had so many she just doesn't know what they hold for her. She cries when her sister has to go too in fear of her getting pokes. Breaks my heart. But again she is so caring, that's part of her character. Time to get little miss of the Bus and hear all about her day :) I will post some updated pics SOON!

Tuesday, June 24, 2014

Update.....

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

Walking to Crawling.................

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

UPDATE TIME

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!