Emily did not sleep well (as in not at all) yesterday night in turn she seized all night and that keeps her from sleeping so when Joe got up for work at 4am I had not had a minute of sleep yet.
Emily had a long doctor appt today too so I already knew this was gonna be a rough day.
We finally fall asleep around 4:30 and just before 5am Joe wakes me up saying he was having chest pain. It was so bad he could hardly speak. Needless to say it scared the crap out of me. He was putting dishes up and he said a pain hit him so hard it almost doubled him over. He thought it might have been a muscular pain and tried to changed positions and breath through the pain but he just could not. I did not want to take any chances so we packed up and headed to the ER.
Luckily I had already packed Emily's bag for the day so she was pretty much ready to go.
We got there and there was literally one other patient so Joe got back very quickly and seen by the dr.
Chest x-ray, eeg, and blood work were all normal. They said he must had just pulled a muscle, gave him some pain meds and sent us on our way.
We were home by 7:30am. I know totally impressive for an ER visit by our family! HA!
I finally got 2 hours of sleep then had to peel myself out of bed and head off to the Dr. We are still in the same pediatricians office just switched to a different doctor in the group. She is a little more experienced with Emily's care.
I had mixed feelings about this because I have had mixed reviews about this doctor, but ultimately its up to our instincts and how we feel about them. We also met with her nurse who I am sure we will see more often plus I have learned that you talk with the doctors nurses a ton on the phone so it is good to build a good relationship with them. Joe and I were both very impressed!
I had not realized how much I was trying to do my by self and how much more help there is out there for Emily. I told Joe when we left I just felt like I could breath. Heidi (nurse) is helping us out a ton with calling companies and dealing with crappy home health company. She is also calling our insurance to see if we can find a way around crappy home health company. She is also seeing if we can get a nurse a few hours a week or more to help out.
I know there are a lot of family and friends who want to help us so much but it is just so hard when you are not medically trained because Emily's seizures are nothing like a normal seizure and her seizures change all the time.
I pray that one day we will be able to have family and friends be able to watch Emily and help us in that aspect. For now there is still a ton of things that you can help with. Cleaning my house is probably the last thing that gets done,not that it is getting done. I just told Joe last night I have no clue when the last time i vacuumed was. We have been having a couple meals a week from church brought to us and that is a HUGE help! Things like mowing the grass so that on the weekend Joe and I can spend time together with Emily or go to the park is another huge help.
The weekend is the only time Joe and I really see each other because when he gets home from work I try to take a nap so that I can be up with Emily all night. So when the weekend comes we try to get house/yard work done or go the grocery and that leaves us with little to no time together.
So while right now watching Emily is not area that can be helped, I would love some people to spend time with us so that they can begin to learn more about taking care of her especially if there is an emergency with Joe or myself they can at least be familiar enough with her in that situation.
Oh I almost forgot! Emily is in the 10% for her weight and head circumference! She has been in the 2-3% until now. She is below the 2% in her height though. She weighs 16.5 lbs!!