Brown and Pink Polka Dots : sickness, moving and head ramlings

We had an interesting weekend with both Jilli, Lydia and I having the nasty stomach bug that everyone seems to have right now. I am thankful for my mom who came over and helped and for Brent because the girls and I were a hot mess. We made it though out of the hospital though which is good news.

Monday we started like we do every Monday at PT. We spend several hours at therapy a week between the two girls. Our girls are loved and cared for by our therapists and they are like family to us. They are the ones leading the charge in the fight for the wheelchair... they are the ones who called every day when Jilli was in the hospital in April to make sure we were all working together to best help Jillian. Its hard to explain how important they are to us. Monday while we were there the head agency that bought our therapy place a couple of years ago walked in. I was nervous when our therapy was bought because the company that bought them ha a bit of a reputation... one they spent lots of advertising dollars, parent listening sessions, and rebranding to try to help last year but I hoped for the best. When three women walked in dressed professionally and LYdia sat there being cute and waving at them and they walked past her I knew in my gut there was an issue. Our therapists handled everything very professionally but my heart has been worried however when I incurred about what was going on they said they couldn't tell me and I respected that. Yesterday a letter surfaced on Facebook (I letter I still don't have) that they are closing the place the girls get therapy. Angry, hurt, frustrated and many more word come to mind about this. The county we live in has ONE ped therapy center and now it is closing. I already dive 20min to get there and to drive to the location they are now offering us is an additional half hour each way. I live in a county with two schools specifically for kids with special needs and a very high wait list for waver programs because there are so many kids who qualify that live in the county. This is already an under served community for outpatient therapy and now there will be none. I hate calling places and am a super non confrontational person but I sucked that up for my kids today and at 9:10 this morning called the VP of the parent company (a non for profit) to voice my frustration. I don't think she was expecting a call that early but I hope she got them all day today because this is not ok. I asked her why. First she said because of internet connection issues which I understand having taught in that area that there is internet issues in that community however when I taught there my husband helped to fix those issues so I am sure there is a work around for that issue. Then they said there was not enough space in the building but the building worked just fine. We have been going there since Jilli was 19mo old. While yes this summer was one of the busiest I have seen it, it still worked. If you were needing more space because you have so many kids then you get a bigger building, you don't close your doors. Then they told me it is hard to hire more therapists there to help with the wait list of kids they have that are wanting services there because many therapists get hired by schools and while yes I understand schools hire a lot of therapists, they struggle to fill those positions as well because there is a shortage but they have several therapists at this location right now and once again this is not a logical reason to close your doors. On the phone I could also tell they had no idea about the demographics of this county. They didn't understand they were pulling the rug out from under so many people, they didn't understand that all of these people can't just go someplace else (why do they think they had a wait list?!) and that asking them to drive to the other location is something many families can't do. We will figure it out and we will figure out the means to make something work but this is another time where because we have the means my kids will get the services but someone else who doesn't will fall farther behind... this has a long term effect. This will also effect my kids because we can not be making a long drive multiple times a week so that means we are going to have to to OT and PT on the same day which is not what is best for Jilli and is really hard on her body. The clinic they are moving us to has more kids which means more germs. Our therapy location was also smaller and very homey... you got to know the other parents and kids where this other one is much larger. Because I have a loyalty to our therapists we are going to try staying with them and making the long drive however this long term had shot the head company in the foot because their bread and butter is adult services for people with disabilities and now I will do what I can to avoid the head company as my kids get older because I now to like many parents before me don't have a view of them as a positive thing... I view them as a business minded non for profit that just happens to work with people with special needs which does not really help the people who need help. So if you go to the same therapy place as we do I encourage you to call the person at the bottom of the letter to let them know how this makes things hard for your kid and let them know if you are staying or going and express why. My reason for staying is 100% about our amazing therapists and nothing to do about the head company that abandons the people they set out to serve. Once this head company took over you could tell they were cutting corners every chance they got but this is the ultimate blow. I also would really love for word to get out about this more. If this is all really about internet then we need to be having a conversation about building up our internet infrastructure in this country. If this is about non for profit healthcare places operating with earnings minds instead of helping people (like... cough cough our med supply company) then we need to be having that conversation too. No matter what this is going to hurt a lot of people.

On the note of medical things changing, I also got a call from our special needs nurse that August 11th is her last day. I am really sad because she is amazing! She has helped us with so many things and is there for us when there is issues. She is my go to person at CHW. We will be assigned to someone else but I am really going to miss her and everything she does for us!

On a happier note, Our friends the Smiths arrived with their moving truck yesterday and a group of us moved them in! I am so thankful for the people who came to help! We are excited to have them have their own place here and hopefully help to continue in Nate's care

We are headed to RMH next week for Jilli's ear tube surgery. They are still low on snacks so bring them to me by Monday and I will be happy to bring them up. Also Target has lots of toys 70% off right now and they can always use things for the magic room so I would happily bring new in box toys up with me too! We are also the midst for fundraising for the CHW run/walk. We finished up the coin war at the daycare. Donating is still open until September!

Today has thankfully been a calm day here. Lydia is napping on my arm. Jilli has been playing in her play area a lot and just stopped to watch some Monkey George. I think we all needed a calm day. I am also thankful that the ranitidine is starting to work again for Lydia and she is not vomiting every day at 5am and pooping 6+ times a day anymore. We are down to one to two poops a day and next to no choking. This is a huge improvement to where we have been the last few weeks. I did spend time again this week calling and messaging people to get meds refilled... why does that always have to be so hard?! Well time to rest, we have a busy week ahead of us!