Brown and Pink Polka Dots : stroller and feeding

I have been writing more lately about big life ideas... today is a bit more of a health update...

Have you every been stroller shopping for a several thousand dollar stroller before?! Thats what I spent my weekend doing. Jillian has outgrown our Baby Jogger Summit x3... not by weight as she is still 35lb away from the weight limit, but she has outgrown it by height. Her wheelchair is great at giving her community independence on days when she is strong enough for community independence... but when she has her crash events or even slow body days her body can not handle the fixed 90 degree position of the chair and since you only can get a wheelchair every 5 years, this means we need a solution for the other days. We also can't go with a "normal" consumer stroller because she is too tall for most and they just don't hold up well with oxygen tanks and all the equipment. We have put off a medical stroller for years, but it just no longer makes financial sense to buy another regular stroller.
So that means we need to get one through insurance. There might be some hiccups with that... like with most medical equipment. But we have been dealing with a "fun" situation with our insurance company since August. Brent changed jobs at the end of May. There was some writing on the wall that his last company was starting to make some odd choices that made us nervous so when a new opportunity came he changed jobs. Sadly a lot of things did fall apart after he left which we found out about a couple of months ago because suddenly our insurance company was not paying for anything. See Brent's old job had insurance for one company and his new company has insurance through the same place. Well apparently Brent's last company never cancelled our policy there. So from June til August 10s of thousands of dollars were charger to our new plan like they should have been however in August the insurance company noticed that we had two plans and since the old plan is older they wanted everything to go through that plan, so they recinded ALL payments since June that were paid by the new plan and told everyone that they needed to submit under the new plan however all of our providers said no to that because they knew the old plan was going to take that money back at some point because we were no longer paying for that plan. So Brent called his last company because we were not allowed to cancel the old plan, the old company had to... but here is the problem... after Brent left they got rid of HR! So there was no one there that could help. They did outsource HR but then that became a whole thing because Brent didn't work for the company when this new HR company took over. There was a 3 way call done between the HR company, insurance company and us where it was supposedly started the process for being fixed however it all needed an over ride because it had been longer then 60 days so we now needed to go through a hole different process to be unenrolled from this old plan. Its November and it still isn't totally fixed. Its been a mess. We have gotten bills, talked to the insurance company SO many times and had a lot of stress as we ask people not to drop us while this all gets figured out. So thing one is to even get it run through our insurance policy since that seems to be a deal right now. I am hoping that since it is a new policy that they are going to see this as starting from scratch, plus the last plan paid NOTHING for the wheelchair, our Medicaid paid for it. So we are hoping insurance works out in this. If not we have a meeting recently with the waver that they might be able to help cover some if insurance does not. But we need to jump through the insurance hoops to see who is going to pay what which can take months.
Because of the cost and how much time it needs to last us, I spent a lot of the weekend researching options. The biggest feature that we need is recline. Several of the models have reline (only about half of the ones on the market) but many of the ones have have recline have the recline feature tied to the parent handles so when it is in full recline mode, the parent handles are lower. I am almost 6ft... that would be a problem. We also need something that can hold all of the stuff that is attached to her. We have broken several strollers because they can not hold the weight of the oxygen. We also need a place to put her feeding pump and pulse ox. A stroller that lays flat would be very helpful with diaper changes in public as she is getting older and has outgrown public changing tables. And if we are spending this much on a stroller it needs to have transit built in because I want to have that option if needed. Also, it needs a sun shade, however insurance likely is not going to pay for that. It is this balance of getting what we need... but not more then we need because the cost of this thing is already way too high... and whether money comes from insurance or medicaid or waver the reality is we all pay into those things and we try to be really respectful of what money we are spending from those places.

Yesterday we met with a world renowned feeding specialist, like the day before we saw her her bio popped up on my Facebook feed because she was presenting for an organization I follow. In that post it was talking about how lucky they are that a few people from the audience are that she will be able to take a few questions and here was us with a 2 hour long appointment scheduled with her. We have met with her before but not since Lydia was a baby. The mess of NIH and the fall out with one of our doctors has caused us to need to jump through some extra hoops this year. This one was fine, going to have a conversation with her and see what she currently thinks was not a bad idea. It also shows that we followed through on things... NIH wanted the kids off tube feedings, so we went to see an expert on that... an expert who has known us since Jilli was a baby.
We talked for a while. She listened. She actually asked how I am and cared. She used a spoon to give each of the kids a few ml of water and watched what they do when they had a few ml of water in a cup. Both kids did everything that was asked of them and worked hard. Jilli was nervous but thats just because she was in a medical office, but she worked hard. Most of the water rolled back out of their mouths. Lydia went first and was so proud of herself with how hard she worked... but by the time Jilli was finishing with her turn the cough had started. We talked about a few things to best help the girls but it was determined again but it was ruled again that the girls are NOT at a place where they can do any nutritive eating... if they can not nutritive orally eat they can not have their feedings tubes pulled NIH or they will die from malnourishment. Jillian takes 2 meds orally and we talked about how to help her with that, but really that is the plan along with helping Jilli to remember ot keep her tongue in her mouth.
The appointment went well and I appreciated her time and caring. She gave me a hug when we were done and talked about how I really do work hard for the girls and that I am a very observant of the girls. Man those were words my heart needed to hear this year.
By the time we took the elevator down to the skywalk Lydia had coughed more and lost her voice. We got in the car and ran over to RMH to drop a few donations off. I just ran in the door quick and dropped them off and then got back in the car. As I went to turn the car on Lydia softly said "I'm scared." I looked back in the mirror and her face looked petrified. I opened her door and gave her a hug and there were tears in her eyes. I asked her what she was scared about and she said her throat any tummy didn't feel good. Remember she had no fear with doing what the feeding therapist asked her... and this is Lydia the daredevil child who often makes me question my parenting, she really is not afraid of much. To see her face so scared at what was happening in her body was crushing. I was going to run a few errands on the way home however after talking to Lydia I got in the car and drove home trying not to cry.
It is one thing to see your kid scared about medical things when it is something has to be done, like getting an IV, blood draw or cath. It is hard, but they need those things so I can rationalize it more in my head. It is feeling very different these days when it is that look with medical testing. It would be different if medical testing these days changed anything but most of it at this point is just confirming what we know is still what is happening. There is value to that, we don't want to over or under intervene, but it is also different to see your kid look at you like that when it is a test that just shows you the same thing again.
It is getting very heavy on this mom heart to have my kids look at my like "why didn't you protect me." Last week we were at Shriners and we didn't know that they wanted x-rays on both kids and they had never had x-rays there before. For Jilli doing something a medical test somewhere new is really hard for her since NIH... pre NIH she would have wheeled right into that room without an issue, now she was shaking in fear. We got through it... but she no longer sees me as the person who protects her in medical situations because we made her do NIH and that crushes my heart more then I can ever explain to you. They took away me being her safe person for those things. So this look from Lydia was crushing my heart.
Both kids coughed the drive home (neither had coughed all morning before the appointment) and Jilli opened her g bag as soon as we got in the car. We got home and both kids wanted to rest for a bit. Lydia continued to cough off and on and kept saying every time she coughed that she was scarred. Now Lydia had a croupy cough several weeks ago that required steroids and she never said during that time that she was scared, this was different. She came to me for a hug and I could feel the lung rattle in one spot. While going to bed last night she had an intermittent wheeze. Dam it! I am hoping since it was less then 10ml of water that her body can clear this out. But she can not eat orally, she can't even do this water daily or we are going to end up with an oral aversion real fast and rightfully so.
I question myself ALL THE TIME if we are making the right choices for the kids. I got over things in my head all the time. I want so badly to do the right things for them... just ask my brain yesterday when it would not shut off at 3am. But we have to listen to what their bodies show us. I often go back in forth in my head of what areas do we push to build skill and what areas would pushing either not help or hurt. I think this is a hurt. Jilli has a med she takes orally and she cant do school for a half hour after that med because she is so focused on swallowing that she can not concentrate to do school. At 6 yr old school is really important and giving her the foundation she needs for life.

So yesterday confirmed what we knew already... it was just hard on my heart to see them struggle after. It is not that we are against pushing our children in ways that help them grown and develop... trust me Jilli would tell you that we "push" her all the time in different areas... but this is different. They have a safe way to eat right now with their tube feedings... and I don't care what NIH says. We saw a world expert who confirms what we are doing right now is the best thing for the girls.

We are scheduled to see genetics next week. We are really hoping they do not cancel on us but they left a voicemail yesterday while we were in clinic asking what we wanted to talk about next week. I left them a voicemail in the afternoon with our questions. Hopefully they keep the appointment because I don't think we are ever getting genetic results from NIH.

Jilli did end up starting OT again so every week both kids do music therapy and PT and Jilli does speech and OT... all of these are an hour away from our house. This means even on "down" weeks without any doctors appointments we still have 6 appointments. No wonder I feel always tired and always behind... however these things are all great and helpful for our kids so we will do it. We are so thankful for all of our therapists and how hard they work for our kids.

In more fun news the girls have been doing a class at the children's museum some Friday mornings which has been a lot of fun. Jilli spent part of this Saturday decorating her dolls for Christmas which was so cute to watch! The girls have been playing together more lately which is so fun to see. We are working though what to do when you disagree but we are making baby steps there. And we are about to head into December which is always a busy time of year!

Some life pictures lately

Sweet Lydi... the Bag behind Lydia Jilli was very excited about. After Shriners we went to the outlet mall to try to avoid rush hour traffic. Jilli loves Janie and Jack clothes... however unless they are on extreme clearance they are WAY out of our price range... but I have found some good outlet deals at that store before (like shorts on clearance for Walmart prices that have now been worn by both kids for multiple summers and still look brand new) so we took a look in the store to see if we could find any treasure deals... we found Jilli a dress at a very significant discount... Jillian and I are doing Dressember so we are wearing a dress every day for the month of December, so Jilli was excited to find this special dress to wear on December 1st. She held that bag through the mall like we had just bought her some crazy expensive fashion brand.