Tested

One of the promises I have made to myself is to be more honest about this journey with family and friends. We try to choose joy, but some days and weeks just aren't easy. This week has been a week where I feel tested. Things just have not been easy and I have been frustrated quite a bit.

When Alex had his big surgery in December it was in hopes of easing his pain and nausea. While we get glimmers of hope that this may be the case, it has been a hard two months for Alex. We STILL do not have the correct supplies from the home health company. Alex STILL has pancreatitis so he has quite a bit of pain and nausea. We have not been able to start feeds and Alex is not absorbing his meds correctly which is leading to a host of other issues. I so badly want for him to feel better and for things to be easier for him. It breaks my mama's heart to see him hurting and defeated.

My sweet girl has also had a hard few weeks. She is continuing to complain of her legs hurting every day. She is crying and asking for medicine to help her almost daily. We are not sure what the cause is, but we need to find her relief so she can be her crazy self.

Bruce has still not found a job and while that has a ton of stressors tied to it, the biggest is the lack of insurance/need to pay for COBRA. Alex is on a special program called the Medically Dependent Children's Program through the state. They will reimburse our premiums "if" they determine it to be cost effective. When we pay "regular" prices it is obvious and they just cover it, but because COBRA is so expensive ($1780/month) we have to "prove" it is cost effective. I got the call this week letting me know they need proof. The way they need the information is to have explanation of benefits downloaded from our primary insurance for all of Alex's care in 2017 and emailed to them. Here's the kicker- they have to be individually downloaded and emailed no more then 3 attachments to an email. Alex has 355 EOB's from 2017. The shear idea of tackling this is overwhelming.

Please pray for us this week. Pray for Bruce's job search. Pray for Alex's pain, nausea and spirit. Pray for Maddy's legs to stop hurting or for us to figure out why she is hurting all the time. Pray for me to not feel so much frustration and exhaustion while I try to care for everyone else.

Ali