Brown and Pink Polka Dots : Pushing

Ever had a few days were you feel like you are having to advocate for many needed things?

Let me explain some of the situations:

-Monday afternoon Lydia had pulmonology. Her appointment a few weeks ago was cancelled last minute because the doctor had an emergency. I explained to the scheduler that we really needed to see the doctor soon so they agreed to see us on Monday, a day the doctor didn't have office hours. The pressing need was to talk about oxygen. Lydia is now mainly walking places but as her skills are getting better she is taking more and more breaks. She is sitting for hours at a time. This is not typical toddler behavior and exactly what Jilli did when we found out she needed o be on oxygen. It had hit a point where casual people who know Lydia were making comments about the change in her they have seen over the last month or so. So her PT did some pulse ox watching during PT and noticed that it was dipping just like Jilli's does. So on Monday we brought it up with the doctor. We explained to her what we were seeing and what other people were seeing. At first she seamed hesitant to do anything and saying she wanted to wait longer but I advocated and she agreed to doing a 12 hour pulse ox test. If she is needing oxygen now we shouldn't wait for her to get worse. This is a critical time in brain development and oxygen is a big deal in that. The doctor said that maybe she will just need oxygen when she exercises but I kind of laughed... are we thinking she is lifting weights? She is 17mo old, her exercise is life... playing is her exercise and her learning but we will cross that conversation once the test comes back.

-The goal was to do the pulse ox test today. You know we have a kid who we are worried is not getting enough oxygen, doing that test soon would be a good thing! Brent called yesterday to see what the plan was and they said they were working on it. He called again before business close and they said again that they were working on it and still thinking we might be able to do it today so we stayed at RMH last night... it is now 4:10pm today and we have called twice today and now no one is calling us back and no one knows when this is going to happen. I am very frustrated.

-Both girls had dental at the hospital yesterday. The dentist said Jilli's teeth look great and no cavities. They did her first mouth x-ray. Her teeth are a little crooked from the passy but the dentist said to keep giving her the passy because we can fix crooked teeth but not acid eaten teeth. Jilli was proud to show Lydia how to be at the dentist. Lydia was not thrilled by the whole experience and bit the dentist but the dentist was fine with it. She is Lydia did break her lip tie all of the way when she fell last month and so far we still don't need to be worried about the tooth she chipped the top layer off.

-Lydia was put on Azythromycin on Thanksgiving for gastric emptying. The first few days went well but suddenly now her reflux is worse and she is pooping 4+ times a day (Lydia normally poops 3 times a week) So I messaged GI and we are trying to come up with a plan. When Lydia was really little (before draining her G) she would get car sick but has been fine for months but now on this med is getting car sick again.

-With medicaid you get 35 visits of a therapy with no questions asked (this isn't per year, but per lifetime) and then after you hit 35 you need a prior authorization every 6 months and they tell you how many they will pay for in that time. Medicaid wants you to use birth to 3 because it is another government funded program but for different reasons some people opt out of birth to 3 (we have multiple reasons why we did). Lydia is now out of her first 35 visits so she needs a PA but the state wants to know that you contacted birth to three before you started therapy someplace else so there is a form you need to have filled out by birth to three that says that they explained birth to three to us but we chose to go someplace else. Well our therapy place has said that they have faxed birth to three asking for this form but have never gotten it back but can't get the PA from the state until they have it. I call birth to three and they say they have never heard form the therapy place and because I'm asking and not the therapy place they can't send it to the therapy place but have to mail it to me. Its just a lot of hoops

-We have decided to go the registry route for the chair for Jilli. I filled out all of the paperwork last Thursday and on Friday they sent me an email asking what we wanted on our registry. Then yesterday they asked me to put everything in my cart and take a screen shot so it did that and am now waiting to hear more. Once I have the information I will let everyone know. I am use to the Target registry so this process feels like it is taking forever for it to be set up but I need to remember this is a much smaller place then Target. Thank you to everyone who messages us about this, we are so grateful for all of your kind words and want to help and we will let you know as soon as the registry is up and running.

-We are followed by the special needs team in our hospital and they help with care coordination and advocating for us. Earlier in the year we lost our nurse and when they assigned us to a new one they assigned us to a new care coordinator who is incharge of our appointments. Well we normally see special needs every 4mo but we havent seen them since June because of this change we didn't get on the schedule before it got full and then the new person wanted to schedule us yesterday for right after the dentist but she wanted our appointments for the day to be at 11:15, 12, 1 & 2 which doesn't work. I asked her not to put appointments that close together. Well I got a mycharge message yesterday that she scheduled us for January... I asked her not to schedule anything else on the day of MD clinic because that is a 4hour appointment and by the end of it last time my brain was fried and the girls were very antsy... well that is the day she scheduled our special needs appointment... so a 2 hour appointment starting at 11 and a 4 hour appointment starting at 1... umm I need to eat lunch and pee at some point. My kids shouldn't be expected to sit for 6 hours straight, that is not fair to ask. I sent a message again explaining that she she said that there is no way we will spend 2hours with special needs however we have more then once in the past, including our last appointment, she was not our coordinator then so how can she say that we haven't. She also keeps saying him seeing the girls soon isn't a big deal because they are stable... No, she doesn't get to make that call. I have many things to talk to this doctor about and she doesn't know my kids! This doctor is the one overseeing our case being presented to the special group at the hospital so i need to check in with him. I got her to agree to us being seen a different day in January. That means two trips to chw in january but that is better then doing two massive appointments in one day.

-Lydia has also been extra clingy the past two days. She brought me the ergo yesterday and then hung out in it for almost 6 hours which isn't typical Lydia now that she can walk. This is fuiling my fight for this pulse ox test.

Tonight I just feel tired mentally! Thankfully we have a calm next few days (tomorrow is Jilli's 5yr pics, how is that even possible!?) so hopefully I am able to devote some time to resolving some of these issues. I am naturally a passive person so piles of stuff like this take a lot out of me at a deep level but thats ok because it is what my kids need.

On a more posative note, we did do some fun things while at RMH!
-Sunday it was beautiful out so we took the kids to the zoo for a little bit. After that we had some friends ask us to join them at the Christmas train. The Christmas train comes to the area near my parents but it has always been too cold out to take Jilli and this day was beautiful out and the train was coming near RMH so we went down for a little bit. Sadly we ended up parking on the other side of the tracks from our friends so we were not able to meet up but it was still a fun event. Jilli got really tired while there and the concert was loud for her ears so we left early but it was cool. Lydia loves the music and waving and people.
The girls also got to do multiple therapies while there... dance, music and art! Jilli LOVED it. I am so thankful for the therapists!
We got to spend time with friends!
St. Nick came last night. That is not something that normally happens at our house so I totally forgot about it but it was fun to wake up to a stocking outside our door this morning with an Elmo coloring book and an RMH ornament!
RMH is beautiful this time of year! I love looking at all of the snow villages (my goal is to get mine up this year!) and Jilli loves the big tree decorated with McDonalds ornaments. I am amazed Lydia left all of the decorations alone!