I wanted to come by and tell you all just how much peace I get reading the messages on here. Wow. I keep saying thank you and that just does not even begin to say how I am feeling. But what else can you say to the very people who pray daily on the behalf of my wonderful son? So for now I say thank you all.
So where do I start? I will admit that those of you who say how great I am doing holding it all together...are being fooled. LOL. I have had a hard week. I would wake up and promise myself that the day would be okay no matter what. I told myself that I can only do what I can do. And I promised I would not allow myself to look at the big picture..just piece by peice..we would do what we could each day. That lasted not a day.
Today I really think I have a bump on my head...from feeling like I am banging it on a block wall...My goodness. Philip's disability worker is trying to make me crazy and she is not far from seeing it happen. I have been a nervous wreck dealing with her on a daily basis. Today I ended a phone call with her...and the tears started. And you know what...it kind of felt good. Just to say..I am frustrated and overwhelmed . And I cried and then I dried my tears..and we are moving on.
So as many of you know the important test had to be canceled earlier this week. Due to that being canceled, we could not do the follow up muscle test. They have to be back to back. Then we missed the MRI because we thought we could not be there due to the test. And by the time it was canceled the MRI spot was taken. Okay...got all that so far? LOL
Today...I think we got somewhere. Philip has a stat MRI tomorrow. They called and he is to have the nerve testing Monday. Tuesday he will have the consult with the pain management Dr. Wed we will see the Surgeon to follow the brain stem mass/cyst . And Thursday we will be Thankful.
There past few days have been rough for Philip. His left hand and arm is hurting so bad. The pain meds are not helping...it is a nerve burning type. His right arm is acting up bad tonight...due to the stroke and the pain from all the operations trying to repair the damage. So needless to say...it is a hard night for him. But we will get through it..cause there is no other choice.
Philip is having to ween off his one seizure medication and headache medication due to a problem it is causing him. This is scary. But he was having some heart racing and other issues that could of been a bigger problem left on it. So until he sees the Pain Management Doctor..we are going to just take each day and pray for things to not get out of control with the headache or seizures.
Philip will start high does steroids this weekend. So he will need to be very careful about germs. It lowers his immune system. That means I will be forced to clean ...deep clean. LOL
With all that being said. Let me end with something positive. We are blessed beyond anything I ever thought we would have at this age. There have been many days that I just was not sure what the future would hold as Philip grew up. So yes we are blessed. I love being his mom. And we as his family can not believe that we were picked to have him as the example we strive to be more like. Strong and Brave. I guess I just love him so much..it sometimes scares me.