Feet

Having a baby with special needs has helped me become a better person in many ways. It still doesnt mean it's not hard. The rest of the world is still moving at the same pace it was. I still have a full time job that takes about 50-60 hours of my time a week, never ending bills to pay,trying to start up a charity, a son who needs just as much time with his mommy as his sister, a family, a daughter who has sometimes 8 appointments in a week, and most recently trying to finally put my own needs in line with all this the last few months and get back to 3 dimensional health - physical/emotional, spiritual, and soul. Some days feel nearly impossible.. today was no exception. 

 Dylann got her casts off last week Thursday after her heel cord release. They look great. 

Before

After

We had an entire day of appointments Thursday with the last one including getting into her orthotics. She will have to wear the boots with the bar for 3 months full time to ensure that her feet dont relapse back to the club position. Well, during that conversation they tell me they dont have the orthotic on hand and had to order it. Certainly being a project manager my initial reaction is to say, why the hell didnt you order that three weeks ago as part of the discharge plan. Well, being that these are the only MDs who have helped me so far I kept it to myself and politely asked what they plan to do in the mean time so she doesnt regress. I watched the tech make a make-shift brace out of cast material and wrap it around her ankles and no one seemed concerned. 

 So, I watched this weekend as my baby's feet slowly started moving back to the old position and there was nothing I could do about it. I was told that the orthotic would be in Tuesday. I spent my early morning fighting traffic in the snow to try to get down there so I can get back this taken care of before work (worrying each time that at some point my work may not be so flexible with me and then what will I do). I get down there to hear that again, they have no orthotic. "The Fed Ex man hasnt arrived." Again, several thoughts went through my head, why are they not here if you ordered them last week Thursday and did one day air as you said you would, and why didn't anyone call me before I hauled my children out of bed a 530am to get this done and tell me to come at a later time or date. Instead, today, all I could do was cry. I dont understand why my providers cannot figure this stuff out. Arent I paying them to figure this stuff out? I can run the entire list of stuff above but I need them to figure this stuff out. I heard a whole lot of " well how far are you away?" and on and on. I just cried. I dont need solutions if there werent constant problems with every provider we see for her. 

 Anyways, I told them I wouldnt miss anymore stuff for things that could be controlled and that I wanted someone to look at her feet right now to make sure they were even going to fit into the shoes with the regression. They went to plan B to put her in other braces and just then the boots arrived. I got to watch my daughter scream in pain for 30 minutes while they restretched her feet back into the 90 degree angle they were last week and then listen to that same screaming the entire way back. All the while thinking, not one of these things would have happened if the braces were ordered at discharge. 

 Yes, today was a hard day. In the scheme of things, we have had a lot worse but it was still a hard day. What never stops amazing me, however, is how strong and resilient my beautiful baby is.