Courage....

Our little peanut has more Courage than I can even explain. The feeling that she has one of the biggest weeks of her life coming up, to her, is nothing that will keep her smile away. As her parents we look at her on this Sunday morning and smile at her smile, yet in the back of our minds we are scared. It has been our commitment from the minute I knew I was pregnant with her that we would not share with her our feelings of worry. Even in the NICU, we never spoke of anything that was not positive in front of her and to this day we have maintained that commitment to our daughter. It takes a lot of Courage on Brad and I's part to be disciplined enough to keep this commitment. Yet she is not able to explain to us if she is scared, worried, or if she is content about her upcoming surgery. But she still keeps a big smile on her face, masking any fear she may have......our daughter is the MOST Courageous person that we know. We are SO blessed. There is so much to be learned from her.

This past week we received Danielle's iPad from school. It is set up with the Proloquo 2 Go program, which we have been using at therapy as her 'communication' device. This program is flat out AMAZING! We are SO excited to finally, now have it at home to use with her as well. Danielle fully knows this device and as she learns to speak more words thru her verbal language, this will assist her to get those thoughts communicated thru us. Last night I sat down and personalized our family members, there is so much more to personalize and over the next week during the time I am watching my girl heal, I will be working on this as well! Here is a little sneak peek and quick demo!

 

We are very excited to be using this device on a daily basis. Every member of our family will be using it, even if Brad and I are communicating something simple to each other we will be using it as an example for Danielle. The possibilities are endless!

This week has been a busy one for Danielle. The week began home with Daddy on Monday for the Holiday, Danielle has begun an icky cough so it was a perfect snuggle day for them.

Tuesday Danielle's cough was progressively worse. As a kiddo who HATES to cough, we knew when she was coughing profusely during the night that something was going on. We headed into see our most fantastic Pediatrician. Sure enough the verdict was RSV. UGH. This was very surprising to us because she had not had a fever or anything, just decreased appetite and this cough. Sure enough we were sent home with breathing treatments every 4 hours for the next 5 days. There is no antibiotic for RSV, just the nebulizer to keep that cough loose and those air sacs in her little lungs open.

Even Dylan is a big helper lending his bed for the occasional treatment in his room and even holding it for a brief minute while Mom tends to something else quick.
Brad was also out of town this week so it was Mommy duty 100%. We managed and after a couple of stay home days with my girl she seems to be a little better. Neither of us want this surgery postponed so we have tried to keep her away from any other germs etc so she gets better fast. Tomorrow is a re-check that we hope brings good news.
    Wednesday during our stay home day, our RN Case Manager from the Home Health Agency we are using after surgery came and did Danielle's admission paperwork. It was a LONG 3 1/2 hour appointment at our house. But it was very nice to be able to meet the Case manager in charge of the RN who will care for Danielle. We have 45-60 hours of in home nursing care set up after surgery for Monday thru Friday. This will be a BIG adjustment for ALL of us, especially Danielle. But after our meeting and being able to speak with this lady for a decent amount of time I began to feel much more comfortable with the idea. It will be an RN or LPN that will be caring for her, NOT an aide much to my surprise but I was very happy to hear it will be a skilled nurse. This week we will be meeting her actual nurse and we are very eager to meet this person and are praying like crazy she is the right mix for our daughter.
As I feel we are on a bit of a journey we do not want to have any road blocks get in the way of our ultimate end in sight, helping our little girl grow and develop more than ever after this surgery. It is going to be a week of anticipation this week. Today Mommy's nerves have begun to put a pit in my stomach but we will tread thru. Anything for our little girl. We will find our Courage for her.