54 days

 It's been 54 days since last updating the blog. 



From April until the end of May is a busy time of year for teachers. It's also been a rollercoaster of emotions for us as we have transitioned to CAP-C and a new nursing agency at the end of April. No one truly knows the amount of time it takes and the emotions a parent feels getting the RIGHT services for a child with a disability unless they have lived it. 

There are so many people that take a job just to get money. Others take a job because they are passionate about the work they do. The nurses we have met through the new agency just want a paycheck. I bought two more cameras to have in our house because I just do not trust the nurse that comes in to take care of Evey. When I have peeked in on them, the nurse is on her phone ALL the time, not interacting with Evey and does the bare minimum. It's been excruciating to watch. She has regressed with her development because the nurse does nothing with her. I have contacted the agency, but they don't seem to care either. It's pretty sad that they don't give the same care to kids on CAP-C that they do with kids who need a Private Duty Nurse. It makes my blood boil. Joshua and a few others at school kept telling me, "We just need to get through the next few weeks." 

My prayer since April 29th is that God give us peace of mind with either sending Evey to childcare or getting a nurse that will be a right fit for Evey. At times I felt at ease with sending Evey to childcare but other times I didn't because she can't communicate and she can't crawl or walk or climb to get in a chair yet. She needs someone to move her at all times. How will the childcare providers be able to do that with her and still have 6-7 more children to care for? Do I really want to send her to a setting where she will get sick over and over again like she did at the beginning of this year?  

One morning while I was getting ready I prayed, "God, give me clarity on what we should do for Evey's care." Later that morning, I had texted her old nurse to see if she could come stay with Evey  on Friday since we didn't have a nurse and she responded, "No, I have to work, but I do have orientation with Evey's new agency and I told them I only wanted to be her nurse." I was so excited to see that message pop up. I immediately thanked Jesus. But as humans, doubt creeped back in and I finally a few days later I called the nursing agency to truly confirm we were getting Ms. Carolina back. They did confirm it, so now we are just waiting for the new agency to get everything in order for her to come back for at least 3 days a week. It truly is a blessing to have her back in our home with Evey! I am hopeful we can find another CNA for those 2 days, but we are also still considering her going to childcare 2 days a week so that she can get used to that environment and we have peace of mind that we have childcare. 

Evey will be turning 2 on Monday and it is our first Golden Birthday for one of our kids. Even though she will not remember her golden birthday, we will make sure we celebrate BIG! She has grown so much since I last updated. She can now stack blocks by herself, she is starting to use her pincer grasp to eat foods, she loves using a fork and spoon to eat and she can say bubbles and can sign fish. 




We love having her in her glasses and her SMOs. We are hopeful that she will be crawling and/or walking by the end of the summer. Her core muscles are very weak so we are going to do our best in the pool this summer to strengthen those muscles. We are still working on getting her to poop consistently without pain. We are on a miralax plan, but our goal is for her to poop without needing it. once she gets moving, we are hopeful that she will not need to rely on miralax for her to poop. 




Evey will need to have a heart cath on June 16th to place a stent in her artery to make it bigger so that she can have more blood flow through to her lungs. This is a maintenance procedure until she will need to get her valve replaced later in childhood. We know she will do great during the procedure and it will be rough for her coming out of surgery, but it's only a one night stay so it will be quick and we can get back home to enjoy our summer. 


Be like a bee-hardworking, wise and delicate!




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