But in the month of January we met with several members of our team and added a new doctor to our team and we are moving forward with a few different things.
-Jillian had a neuro stim placed on Monday of this week. This is a device that she wears on her ear for 5 days and it send electrical pulses to her nerves to try to help with GI symptoms. Currently we are trying this for a week, waiting to see if insurance covers and then going from there. We have several friends who have had good success with the neuro stim however it takes about 12 weeks for them to really feel like it works. Jilli has done pretty good with it. Her ear is sore because it has 7 small needles in it that attach to her ear. She asks all the time when she can get it off (tomorrow at 1:30). We will see if this is something we continue with.
-We met with Palliative for the first time this week. Several people have asked us about that over the last year but a couple of weeks ago our GI and undiagnosed doctor decided that was the next right move for us and referred us there. Honestly without them asking for us to go there, I don't think I would have ever actually made that call. But they are right, that is the place we need to be right now because we are having a lot of quality of life conversations and currently all of that is falling on Brent and I. For 6 years we said yes to most medical testing and honestly we had a view of just wanting an answer so we were willing to do what we felt we needed to do to get the answer... now our focus is shifting... trust us that we still want an answer... we also want our kids to be kids. In talking with our team we could keep testing the same things over and over but it likely will not be helpful for our kids and take away from their childhood. So now we focus on what will be the most effective and most helpful things for them to be able to be kids. Palliative is helping us have this view for our kids. This is also stepping in for what medical interventions we do. Brent and I have always looked at the weights of different medical interventions... when oxygen fixed what the multiple inhalers never touched we asked if we could discontinue the inhalers because our kids don't need extra unneeded meds pushed into their bodies. Our kids wear their leg braces when they are going to be walking a lot or playing hard, but we don't have them wear them at calm times because it is not a medical intervention they need all the time. Jillian pallet has low muscle tone that effects speech, in talking with ENT they offered us a surgery like cleft pallet surgery however Jillian doesn't have a cleft and the risks of the surgery is sleep apnia which is not something to mess with for Jillian, so we said we would keep trying to help with pallet with speech exercises. Urology offered us cathing however at this time Jillian does great at taking care of her own diapers and she is only averaging one UTI a year and doesn't deal with diaper area infections so we feel like least invasive is to stick with diapers for now and talk about things again in a few years. So while it might look from the outside that there are a lot of medical interventions that the kids have, there are probably an equal amount that we have worked with our team to decide those were not the right interventions for the girls. We don't want to do more interventions then what is needed and we try to make informed choices on the ones we do put in place.
-All of that said we are going forward with an intervention that feels huge right now. On the 10th Jillian is having a port placed. I know for some diagnoses this is rather standard but it is something we have tried to not do but it is hitting the point that we feel like it is the best choice. This was first brought to us as an option in April and at the time we said that Jillian did not need that level of intervention yet. This fall however Jillian has been averaging 2-3 weeks between crashes which means we are having an emergency at our house every 2-3 weeks since August! We need to get off this hamster wheel of emergencies! So we have worked with our team to come up with this plan where Jillian will go in for a scheduled infusion every other week to try to prevent the emergencies. While this is a new way to do this intervention we are hoping that it will work out to less hospital time. Jillian has had some times this fall were vain access has been hard like our hour and a half trip to lab and the 5 hours on Halloween we spent trying to get an IV in. That is not great for my kid's mental health. So with her team we made the choice to put a port in. I have honestly woken up every night since then questioning our choice, analyzing if we are rushing into this, trying to figure out other options. Multiple of our doctors have all agreed that this is a wise plan, and I know in my heart this is the right next step and it will likely increase Jillian's quality of life because she will be able to spend less time in the hospital, however it still feels heavy. It also doesn't help when someone on the internet that only kinda knows you bashes this choice you are making very publicly but thats another story and just added yuckiness!
-So Jillian is having port surgery on February 10th, and GI/ENT surgery and testing on February 18th. Last year we were at NIH February 10-20... This year we are spending that time have two surgeries. I was wanting to mark this February as different... but I was thinking a fun weekend not two surgeries. Its our year mark from something very traumatic. Honestly most Februarys have been rough in Jillian's life... her first hospitalization was in a February, she has ended up in the hospital many times in February... its a month that holds a lot for us, because there is the fun stuff of feeding tube awareness week and rare disease day... and then there is the heavy. Just know that we are holding this all right now, and it feels like a lot to hold.
-Lydia started on Azythro to help with her tummy pain... so far she has had increased stomach cramping so I am not sure but we are going to give it another round to see if her body handles it better the second round.
-Palliative helped to facilitate a conversation with ENT so we have the right things happening on the 18th including an airway scope to look a strange spot that Jillian had in an airway scope in 2014... we need to see have it is has done since then and what it might be effecting now.
-Please pray that insurance approves Jillian's new stroller qucikly!
-We are home now for a week. For this week we are hoping to rest to have strength for the weeks to come and to get some things done around the house. We have been so in and out of the house since August that next to nothing more has happened in our bathroom projects and our house needs some serious organizational help! When you are always packing and upacking and just trying to do what you have to do until the next time you leave, the house suffers, we are going to try to help it this week.
-In fun news... in one of my last blog posts I talked about the American Girl doll of the year that Jillian really wanted. We worked together and added up her birthday money and she was working on figuring out some ways to earn the rest of the money. Our hospital had a project they needed kids help with so the girls helped, I didn't think that they would compensate the kids in any way (beause we were just doing it to help out), however they did, and in that Jillian earned the rest of the money she needed to buy Joss. I ordered it online on Sunday night and it came to rmh on Tuesday (she knew she had the money but she thought we needed to wait until we could get to the AG store, which she was fine with, but she had no idea she could order it online so it was a huge surprise when it came in). Jillian has been SO excited playing with Joss this week! And she is really proud that she spent her money to buy it.
-Please be in prayer for our local special needs community as this article came out this week and it is rocking the community. Many of us have had interactions with this couple and this brings out a lot of feelings. Stories like this are not ones that I heard until I was a mom of medically complex kids and the weight of these stories are held by the community. Pray for everyone involved: https://www.nbcnews.com/news/us-news/er-doctor-was-charged-abusing-his-baby-15-medical-experts-n1123756?fbclid=IwAR1s6eJS6FUp1ZPu-BZCHJGACBUR879oLHhyIl7dZadcYSDYsDOOelMZ75Q
-We are in the final stretch of our Feeding Tube Awareness Week fundraiser to collect Buzzy and Feeding Friends for the hospital. To read all about it CLICK HERE! Thank you to the people who have already donated. I know we have received 3 Buzzys and a couple of packages of Feeding Friends so far but we would love to be able to gift the hospital with more to help love the kids who are there! Feeding Friends can take a little while to ship so the sooner those are ordered the better.
-We met with urology last week and they said from a urology standpoint that Jillian presents like she has a neuromuscular disorder... if we could only have a name for which neuromuscular disorder that would be great. But that is what everyone says often. They did complement Jillian on how she helps to take care of things from a urology aspect.
-The girls spent time helping make things for others with friends at RMH. I also worked a bit on Tubie Friends... I believe the donation part of the Tubie Friends website should be back up and working so if you want to help pay for shipping to get these animals to kiddos that would be awesome!
-We spent SO much time playing board games lately which both girls love. That is one of the blessings of rmh, people to play games with which teaches my kids so much.
-There was some conversation this week about working on teaching Jillian typing more and focusing less on handwriting... as a teacher I am not sure how I feel about that yet... its a mixed bag. Writing is SO important in our culture and I want to give her the best shot possible... writing also takes a lot out of her and despite several interventions and weekly handwriting therapy with an OT, we really are not making much gains. We will figure this out, but this is also something without a clear cut answer. Handwriting and coloring is one of those ways that her muscle delays are shown clearly because a lot of prewriting skills children develop with little help and even with a lot of help they are not developing which has my teacher brain often scratching my head. She LOVES to draw and do fine motor things and is very motivated at working on it... its one of those areas where even if I was sucking at teaching her, she would still be farther then she is right now... its a reminder that there really is something going on there, and while I know handwriting isn't the first thing others see, for me its one of her heavier things.
-Jillian is working on learning 10s and 1s in math and is doing a great job at it and is starting to add 2 digit numbers.
-The girls are LOVING playing with this toys today! They are actually playing rather nicely together. Jillian was excited to introduce Joss to her other dolls and play with her Playmobil Hospital and Lydia is so happy to have her Barbies. I need to run to the store to get some food but right now I am just going to let them play... its good for their brains!
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| I was SO proud of Jilli and how hard she worked at this. For art therapy they started with a pre made blob (all the red in this picture) and had to make it into something... Jilli make hers into the Steamboat Willy picture and you can tell what things are in this picture... that is HUGE for Jillian! |
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| Sometimes tummy pain is hard! |
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| Her neuro stim |
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| The girls made hearts and put them on the doors of the RMH staff members |
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| Jillian and her friend Grace showing their neuro stims... I am so thankful for Grace and her mom in this process... I think honestly if we didn't know them I am not sure that we would have gone forward with trying this |
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| The first night a couple of the leeds came off of Jillian's ear and Grace's mom helped Jillian get them back on since Grace has had so many neuro stims and they know how to do it. |
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| A logic game in infusion. We are going to have to figure out an infusion bag because they will now be every other week and they are 5 hours long... so two small kids in a small room that need to be kept busy! |
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| The girls LOVE Polly Pockets! |
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| Queen Sara cut the box for her while she covered her eyes |
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| Making Slime! |
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