Anxity to a smile

A picture of Jillian laying down on the floor. If she spends time walking around and being active she lays on the floor like this for a while to rest. She lays on the floor places like this all of the time. She does in frequently at school as well as when she is home. People see Jillian walk around and move for a few minutes and will think she can move like any other kid her age but they don't see how much a little movement does to her. It does not correlate with nap or bed time and she does not fall asleep when she lays like this she just rests.

I have been very anxious this week as I waited for pulmonology to call me back about Jillian's o2 levels dropping with movement. I sent them a long message online on Monday explaining everything that was going on. The nurse called me on Monday and told me that Jillian's doctor was out of town for the week but that a fellow would be calling me back shortly because she did not feel that this could wait until Jillian's doctor got back.
Them nothing more... on Thursday I called and left a message asking what was going on. I feel like I was plenty patient waiting until Thursday to call back to check in. The nurse called me back and apologized that no one had call and told me someone would call me on Thursday and that she was paging the fellow right then. Thursday came and went and I still did not hear from a fellow. Mind you by this point I was attached to my phone waiting for a call.
Friday morning I called back up there. The front desk answered and said that the nurse was not in yet for the day but they would check into it for me.
Around 9am I got a message online from the fellow telling me they looked at my child's record and they think I should give her two puffs of her inhaler before therapy! I was MAD... ok really mad is putting it lightly.
Honestly that answer was insulting. This is a child who uses her nebulizer frequently... and ends up needing it often before therapy because of breathing troubles and it just makes her jittery, unable to focus and coordinate movements, and she still has a hard time breathing. If you looked at her chart for a short amount of time you would know how many nebulizer viles this child has used this fall/winter. If I thought a neb or inhaler would help it I would be doing that. Who do you think determines when she takes nebulizers... that right... me!
And giving her two puffs of her inhaler before therapy will do NOTHING for any other time that she is walking around. What am I suppose to do... every time she wants to be up and moving I need to give her 2 puffs of her inhaler? This child is going to be getting a lot of medication then. I still don't think that is going to solve the problem.
That answer was just the standard answer. It did not take my child or her condition into consideration. An inhaler is NOT the solution to everything.
After I calmed down a little bit I decided that it would be best for me to call Jillian's pediatrician's office. Her ped is not in on Fridays however she has a great nurse practitioner who is great with Jillian. I called and left a message asking to speak the nurse practitioner. She called me back a little while later. I explained to her what was going on. She was as frustrated as I was. She asked a few questions and she decided that we need to go for a cardiology consult to make sure it is not her heart that is causing the drop in her sats. She also said to call pulmonology back on Monday since the doctor is suppose to be back then and ask for her opinion on the situation. She said if we did not get anywhere that way to call her back and she would help us out more. I called and got her into cardiology on the 21st. We will see what that brings.
I am just grateful for a plan. I  dont expect anyone to be able to magically fix anything with Jillian, but I do expect them to try to help her and not blow me off. I am really grateful for the nurse practitioner because she really stepped in and is helping us figure it out a plan. I am really grateful for that!

I sent my cousin Annie a message asking a question about a dr at Children's and she called me back and we were able to talk about our two little ones. We are both in the same boat of special needs parenting and sometimes it is great to talk to someone else who gets "it." We talk this odd language of therapies, doctors, medications, adaptive equipment, and procedures. Even though I don't wish any of these struggles on either of our little ones, it is nice to have someone to walk the journey with.

I was on my way home yesterday after going to the grocery store and as I sat in a drive-though waiting for coffee I got a text from Bethany saying she and Karla were in Chicago, on there way to something in Wisconsin and they would be driving past my house and were wondering if I was going to be home so they could stop by. If you don't know the story, I started babysitting for the Hobson children when I was 12 years old. They lived a block from my house and I spent a lot of time with them. I consider those 3 kids like siblings and Dave and Karla like another set of parents. They moved to Indiana when I was in high school so I do not get to see them as much anymore, but when we do it is always like time has stood still and we pick up like time has not passed.
Well I was on my way home so I told them to come on over. They came over and hung out for a couple of hours before they needed to get back on the road. It was amazing to see them (it has been about a year since I got to see them last) and I loved spending time with them even if it was just for a couple of hours.

After they left I started cooking dinner because we had invited Brent's uncle Cory over for dinner. We had a yummy dinner and hung out and ate and talked. It was a really nice night. Very relaxing!

We also got all the paperwork in the mail yesterday to renew Jillian's secondary state insurance. That is a lot of paperwork to do. It is worth it though because it helps Jillian out a lot. It just takes a log time because it needs all of her medical info! 

I am grateful the day ended so much better then it started. I am thankful that we have a plan for Jillian and that the nurse practitioner was so helpful. I can't explain how much it means to me how helpful she was.
I am also go grateful for all of the people who helped turn yesterday around. God brought some amazing people in my life yesterday and used them for some much needed encouragement.
Thank you also to everyone who has been so encouraging this week. I can not even explain how much it means to me. Thank you to everyone who has sent us a facebook message or text with encouraging words. We are so thankful and they have really helped shine some light into some really hard situations. THANK YOU!

Crazy hair sitting in the ball pit

Playing with Bethany

Jilli, me and Bethany

Jillian's leg. You can only slightly see it in this picture. She is falling a lot when walking and her legs constantly have bruises at this point. We were joking this morning that we need to get her a Michelin Man suite. During the winter she has pants on but it is going to get warmer and there bruises are going to be out in the open.