Saturday, February 15, 2014

Struggling. Again.

I'm not sure what has brought it all back up. It could have been that one of my best friends had a baby after a hypertensive pregnancy and her baby is fine. Maybe it's because some other friends just had a baby that is still in the NICU and has a poor prognosis due to low oxygen levels. Maybe it's just the tides and waves of grief. I don't know. But whatever it is I just wish it would leave. I relive this crap every single day. What if I had gone to another doctor?  What if I had gone to another hospital?  What if they had delivered her earlier?  What if they had not just charted but actually done something about her dusky color and abnormal muscle tone and poor eating?  The truth of the matter is that none of it matters. It's too late and it doesn't matter. Every single day I go though this scenario and every single day I just try to push it away. I'm angry, I'm sad, I'm confused. I thought I had forgiven but now I'm not so sure. I'm trying though. I'm trying so hard to dig my way back out of this hole because I know it doesn't do anybody any good. I know I am commanded to forgive. So I will but I still have so much to work though and so much work to do. I'm just glad that I am learning that forgiveness and restoration are not the same thing. I started reading a book called "Forgiving The Unforgivable" and it is helping me. It is opening my eyes to so many things and for that I am grateful. So just so you know- having a special needs brain injured cerebral palsied epileptic tube fed kid is not a horrible thing. I love Anna and I would never change who she is. I just hate the struggles that she has that didn't have to be. Grief is real though and although it waxes and wanes it doesn't seem to ever totally go away. With every missed milestone there is grief but for every missed milestone there is a triumph of some sort that makes it all worth it. 

Anna started the new seizure medicine and we are moving the dose up ever so slowly. So far so good. She had a rash one day which scared me but some Benadryl fixed it and luckily it didn't turn out to be "the rash" that is so feared with Lamictal. She has had one seizure since being in the hospital. It's one more than I would like but I also know she is not anywhere near the full dose of medicine so I just have to sit and wait. I took Anna to the doctor on Monday for an earache. Her ear was not infected (yay!) but her tube is out and rubbing on her eardrum which is why it is hurting. There's not much we can do but wait for the tube to move. So yay, good appointment, right?  Wrong.  Dr. Goff pointed out that Anna had lost weight and her BMI is not even on the chart anymore. It would have been an easy fix a couple of years ago but now Anna is 6 and has opinions about tube feedings. Most of those opinions are not positive ones. We were able to compromise with something I found odd but if it works then ok. Anna is now doing continuous daytime feedings in exchange for not getting nighttime feedings. I have more hours in the day so I can get more calories in her. I'm also supposed to start back adding Duocal to the Peptamen to hopefully get her daily calories more near where they should be. She handled it fairly well this week and I'm so thankful for her teachers and aides who made it easy. 

We met with the DME company to order a medical stroller. That was a tough pill for me to swallow. It was great when we could just use the regular stroller and pretend everything was "normal".  Those days are gone. She doesn't fit those strollers anymore. Next will be handicapped tags for my car. I hate to do it but the long walks sometimes wear her out and she is burning precious calories that we can't afford for her to burn. 

I'm nervous about what we are going to do for school next year. We are to the point that we need to decide on Inclusion or not. There are so many positives and negatives and I just don't know what is right for her. That will be a whole other post and I'm not ready to go there yet. 

You would think after reading this that things are falling apart but honestly they aren't. We are doing well in so many ways. Anna continues to make progress daily. The other two kids remains just as amazing as Anna. They are each so different.

If you have a spare moment please say a prayer for some friends from church. Here's the story:
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