Why is it so hard?

 Getting what Evey needs should be easy.

Why is it hard then? Why do I have to call Social Services each year to say, "Yes, she still has tri21" so that she can get medicaid? But when I call, I'm on hold for 30 minutes at a time. I called two separate times today and was on hold for 30 minutes. The first time, I called on one of my planning breaks and had to end the call because I had to get my kinders to teach them. The other time I called, I was on hold for 30 minutes but had to end the call because Ty needed something. Maybe I will have better luck tomorrow. 

Evey was also denied CAP-C so now I have to go through the appeal process. Why would they appeal a child with tri21 with a gtube? All the paperwork is there! It's not like one day she won't have tri21!  It's so frustrating!

I am in the process of trying to get her school to increase her Occupational therapy time so that she can progress with her fine motor skills. While crawling will help A LOT of those skills, we can still work on her fine motor skills simultaneously. I will be meeting with her therapists on Thursday at pick up so that I can share what I want for Evey. Tonight I will be working on putting together OT goals for her based off of the evaluation Duke did and what I have seen from her at home. What irritates me the most is when I'm told it comes down to the paperwork and not necessarily what the child needs.  WHAT?!?  It should ALWAYS be what the child needs. The NEEDS should be on the PAPERWORK. This is what is wrong with the system. We are putting too much emphasis on the paperwork instead of what the child needs. 

Parents and siblings of children with disabilities need a support group. Down Syndrome Diagnosis Network  (DSDN) has many support groups for almost everything from large families, to heart warriors, to birth groups. It gives me a chance to air my frustration in a safe place where people who are in the same boat can support me. My ultimate supporter and problem solver is Jesus but sometimes it's good to have human support as well. I truly believe Jesus speaks through people and sometimes just meeting the right person will help me see what Jesus wants for Evey. 

Evey had a great day at school. She showed them that she could sign milk. Every time she is out for sickness she always brings back something she has learned. Even being sick doesn't stop her from learning. 

After dinner, she played for awhile and I needed to brush her teeth. I have read many articles saying that starting a routine early with brushing will help kids with tri21 have better dental hygiene. I put her head between my legs and had Laney hold up Ms Rachel on her phone so that it would distract Evey. It worked like a charm, and I was able to brush all her teeth without a fuss. For a reward I let her continue watching Ms. Rachel until bed time. Hopefully by the time we go to the dentist in March she won't think anything of it. 

She woke up happy and went to sleep happy. I told her tonight that she needs to show them at school how smart and strong she is. She looked up at the ceiling (looking for her angels), and we said a little prayer and I sang her songs and she fell right asleep. 

Be like a bee- hardworking, wise and delicate!