Wednesday, December 12, 2018

Advice and Goals.

So you get three blogs from me this week which means I must be feeling more like myself again. My eye is swollen today and my face hurts but that's okay. The stretches between these flare-ups is getting longer and longer, which to me means I am healing. So this week I have been approached twice by people I know for recommendations for a child neurologist. It makes me sad that anyone I know would have the need for a neurologist but having a good neurologist that cares for your child is vital. So I thought I would share a few things I learned with Jude just in case that could help any of my readers. 

1. Jude saw lots of doctors and his best doctors knew his case without even opening his file. Over time they began to truly care for Jude and always had his best interest at heart. His neurologist even quietly showed at his funeral slipping in the back and then slipping out just as quickly to get to his next patient. The neurologist we picked listened...truly listened.

2. A good doctor may be a far drive but a good doctor is worth it.

3. A fever isn't always a scary thing, even a high fever. Sometimes a fever is just doing its job and fighting the infection.

4. The internet can be a plethora of useful information but it can also be an unnecessary added stress so always consult with a physician before scaring yourself.

5. You are your child's best medical advocate. It's okay to say no to a physician, it's okay to ask for a second opinion, and it's okay to request additional treatment.

6. Always fight a denial on insurance or Medicaid. They're counting on 3 out of 5 people to not challenge them. I was flat out told this when I won my 8th appeal for nursing for my son.

7. Keep video's and journals if you suspect your child is having seizures or spasms. They are can be vital for a proper diagnosis.

8. A medical momma has a whole new outlook on things like medications and vaccinations, don't judge her or yourself.

9. It's okay to say no to friends and family. Your child's health is far more important than a get-together or holiday.

10. Only go to a pediatric ER if you suspect something is wrong. Any time we went to a regular ER we were transported or they were just lost. They can be great for a broken arm but anything that's complicated needs a pediatric emergency physician.

11. If your child doesn't have trunk control to sit look into Danbar Hensinger head support, A Bumbo chair, The Tomato seat, and a KidCart or wheelchair with a headrest. These are all amazing tools.

12. A G button or feeding tube sounds scary but it can be a huge blessing in disguise. You can give medications without fighting or throw up.

13. Lots of momma's are here with you and always available for you to ask questions or reach out to.

That's just a few tidbits I thought I would pass along. 

So has anyone set their goals for 2019? I have sat down and thought about what I really want this year and these were my top 5. 

1. For the first time in years, I want more time for me. I also want quiet time to be with my husband that’s not riddled with sadness or tragedies.
2. I plan on getting in shape again and by April. Seems short but I can do it. I have before.
3. I would like an amazing trip somewhere filled with history like Italy.
4. I’d like to help Emily reach her goals
5. I will have the best year at work I’ve ever had


What are your goals? Share with us. 

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