Life keeps rollin

I had a pt appointment a few days ago. It went ok but they found that I now have a contracture behind my right knee. Is this honestly how ageing with cp goes I guess so for me. They are also trying to get me used to using forearm crutches because i can not walk 350 feet without fatigue and pain to the point I am limping a lot.
I told her that  I take care of my six month old nephew during the week and she was like oh wow you have to be beyond exhausted by the end of a day. Thant is an understatement but I am going to keep going as long as I can. No way am I giving in to cp I may have to make changes to how i get around and how i do things but i will keep doing them and I am determined to walk for as long as I can even if it is with a walker or crutches. she is trying for crutches because of how active I am taking care of the baby. she recommended the full cuff forearm crutches so that they can hang off my arm if I am busy with cooper making a bottle or making his lunch. I will post pics when i get them 

Kind of stressing a little

Just  a bit stressed right now. I went back to new England Rehab hospital today for a follow up with the docs over there and A PT it was determined that I don't have much range of motion in the ankle that they did the surgery on. The physical therapist asked me to move my foot up and down and inward and out she said i had nill to no range in any direction so I have to go to pt for the ankle as well.

I did get a prescription to change my AFO to articulating or hinging at the ankle. they are hoping that adding some of the natural flow of movement back in will help improve the range a little bit along with pt. I go to that appointment on march 8th. I have been having spinal manipulations for back and pelvic pain which seem to be helping a little witht he back pain I can say for sure. I have not been in a ton of pelvic pain recently so i am hoping this is a peek into what may lay ahead for me but i am not counting this as a blessig yet I am enjoying it but it will more than likley be temporary. 

Feeling good for now

I have been feeling pretty well pain wise latley my hip is bothering me still but I am trying to push through that. The meds my GYN put me on for my pelvic spasms are helping . I am in less pain right now with endo than i have been in a long time. I have now taken up the nice activity of trying to loose weight or at least just get some cardio exercise even if i dont loose anything im making my heart a bit more healthy.

I have also been working really hard watching my lil nephew he is five months old my niece and nephews are my world adn the reason I have chosen to use my good days to try to get in shape. I want to be able to be more active with them than i have been in the past with all the health issues. I am also working on building A speech library on his android in hopes that it will make it easier for him to communicate after hsi stroke. I Am curious for those who have non verbal kidos with cp what apps do you use for the I pad or other comunication device for school work thank you for any insight It is apreciated

Frustration setting in really bad

Well my year has not started the way I had hoped it would. This year has again been nothing but doctors appointments,. I was hoping for a better resolution for issues than the trial and error stuff but i guess that is as good as it gets,. I had to go to the doctors again today for a urinary tract infection this one is official lol she siad all markers for infection were present along with blood so the good news is it is not just my pelvic pain this time thank god. I would have cried had she said no infection as my bladder has been doing fairly well with being comfortable.
I was taking flexeril twice a day for spasms of the pelvic floor and I told my primary care doc that it made me way to sleepy so she siad to talk half the dose twice a day to see if it still helped with the pain without making me so sleepy if not she is willing to change it for me.
I am ready for a vacation life is just too crazy for me these days. My legs are bothering me a lot as well with pain in the muscles at the back of my leg and the ones in the front also my hip. i am officially going to new England rehab again for possible brace adjustments the fact that he left me in a solid AFO was good in the very beginning but i am starting to feel that it is restricting my range of motion that is about it for me for today it has been crazy with medical stuff here,.
I am feeling really upset because mom is under so much stress with all of our medical stuff I feel that there has to be a way to deminish her stress but I am not sure how yet 
Dad is getting speech again for a bit to get him using his tablet for speech purposes which will be a good thing any good speech ap ideas for android suggestions are more than welcome miss emma any ideas lol thanks guys for reading I hope u r all well

Im still hangin in

The craziness continues. the new medication she put me on for muscle spasm took a lot to adjust to but i think im finally starting to feel normal again lol. I got a really bad migraine that lasted three days but that seems to finally be gone. I can not see an actual chiropractor because my primary care works with a DO who does spinal manipulation so i am limited to using him because they do not refer outside of the practice. I am OK with this as it is covered fully by my insurance. the other place that we were able to find that took Maine care i would have had to pay out of pocket for the initial visit and the six month follow up as my insurance does not cover those with a chiropractor. the person who i spoke to also said something about me needing to pay a membership fee to be a patient there so I am in a way very glad to have this going in my favor. Really hoping that getting my spine aligned will help with the constant dull ache in my pelvis. I asked for a hysterectomy again and she still feels that it is not in my best interest because I am already starting to have thinning of the bones which is pretty depressing because i know that i will be suffering with this pain well into my forties. Really praying that once my time comes closer she will be willing to take the step and do the surgery. I totally understand where she is coming from however im exhausted from it all. I am hoping with all hope for another two months of feeling just the dull ache which has pretty much became normal for me. I have scheduled my manipulation for the 6th of February I believe it is don't remember totally. I feel so lost in the midst of doctors its not a good feeling for sure this is not where i pictured myself being at 27 but I have to deal with what I am given. Depression has been in my court quite a bit these days which does not make things any easier for sure Im not sure f it is from being cooped in the house because of winter or because of everything going on or from the meds but i am not liking it at all Thank you all of my readers for the support you give it is much appreciated.

another updaate alot going on latley

I had a really tough weekend with pain over the weekend and ended up in the er on the 13th because i could not get my pain controlled here at home. I had another follow up with gyn on Tuesday the 16th and she put me on more medication for the muscle spasms and referred me to a chiropractor she also mentioned something about a pain guy at mercy hospital and injections of some sort not a huge fan of the injections but I will try anything that might help. I will keep you updated on how things are going. I asked for another surgery however she would not give me a hysterectomy because of my already thinning bones so im stuck with this for some time to come.

an update on things

Now that I have finally gotten access to my blog again I will update you all on how I have been doing. I have been having hip pain again and started physical therapy for that yesterday which means its really sore today but I am hoping that it will diminish soon. I am still seeing positive affects with continued pelvic floor therapy which is good. To Emma I didn't get alot for Christmas but that's OK with me I got what i really wanted a new i pod to replace the one that got dropped and broken and some clothes but the best part of my Christmas was that I felt well enough to actually really enjoy the day and all of my family. also Emma yes i still have my brace that goes on my left leg I will have it forever now to keep my foot straight because if it does not stay straight I can not have any further surgery on it so I am making the smart choice to keep the brace on as much as I don't like it. I finally got my yearly upper respiratory infection shortly after Christmas and i am still battling with it now but it is getting better each day. I had to be put on antibiotics because of the fear that it was bacterial since it hung on so long.I meant to post holiday pics but have not done so yet I am hoping to get time really soon but my lil four month old nephew keeps me pretty busy all week i am quickly posting before he wakes up for some breakfast