Brown and Pink Polka Dots : How can I help

Girls update:

Jillian:
1.I talked to genetics Tuesday. They have enough muscle left over from her muscle biopsy last year that we don't need to take more muscle when she has her surgery on the 9th. They have submitted to insurance to do the additional testing on the muscle they have left. They are going to call me back once they hear from insurance.
2. I called Tuesday and made her follow up dental appointment.
3. I talked to our GI dr yesterday and I guess insurance is giving them a hard time about the surgery. Her doctor filled out paperwork for it so hopefully they are nicer now... hopefully. We have yet to have this insurance company deny something so I'm hopeful it will work out.

Lydia:
1. Monday we had her speech eval. It went great! We have seen this speech path before multiple times with Jilli. We talked and she agreed that Lydia is not safe to be eating by mouth. She asked why we were there and I explained what all happened and she said that was just crazy. As much as I was annoyed with having to go, it ended up being a really good appointment. She wrote up her professional note to the doctors basically saying the same things I was saying but it will be different because it is coming from her. She said we could try using a flat special spoon with a DROP of water on it twice daily to promote swallowing since Lydia is not handling her own secretions the best. However she said she is not sure if this will help and we agreed not to do it until after the tube placement so we can drain her stomach while we do it. We are talking about less then an eye dropper amount of water. She said if she has a hard time with it to stop. She gave me a hug at the end and said to call her if she can help us with anything and that she knows there is not a ton she can do for us but she is more then happy to support us any way we need. I'm glad we have that checked off the to-do list.
2. I got the report from mychart Tuesday from Lydia's upper GI study. First off they kept the camera on for 24 seconds... they said in that time they did not see any reflux! Ah! We KNOW she refluxes. I was emailing with Stacy (Caroline's mom) the other day and her comment was anyone who has spent more then 10 minutes with Lydia has seen her refluxing. I really hope this does not set us back and that they try to say that because she did not reflux in that 24sec timeframe (which not all of that time was there anything in her stomach and they only put 8ml in the NG tube) that she does not have reflux. Additionally it also said that sedation was given by anesthesia... this is where huge questions arise because Brent and I never agreed to sedation and no one talked to us before or after about giving her anything (she was in IR for it and because they were going originally be messing with her NJ tube we were not able to go back with her) and when she came out she was happy and smiley and did not act like she was given anything. Yesterday when the GI doctor called (while we were in pre-op for Brent) I asked her doctor about it and she said that is strange and would look into it and get back to me. This afternoon I got a call from the GI nurse that she talked to IR and no sedation was given to Lydia. Thats what I though but I needed to make sure for the future.
3. GI wants Lydia to be seen by the airo-digestive clinic. They are trying to work out when they can get her in since that clinic only meets once a month. That clinic is made up of GI, ENT and pulmonology. Her GI told me yesterday that they will probably want to do more scopes of her once she is seen in that clinic but since we don't know when she will get into that clinic we are going to ago ahead with surgery now and have those scopes later, most likely in the next few months so it looks like multiple trips into the OR coming up for Lydia.
4. Her home health nurse came today and she is up to a little over 11lb!!! This puts her at 5kg which is the lower limit for a GJ peg. Her nurse was calling GI to let them know and see if maybe we can just place a GJ tube next week. It is completely up to IR and our GI dr said IR might want to wait until closer to 7kg so we will have to see.
5. The vomiting was worse yesterday. When we were laving for the hospital she puked all over and then she puked twice once we got home. She puked this morning as well. There is not much we can do. She is puking stomach bile a saliva. We just need to wait for the new tube so we can drain her. Everytime I start to wonder if she needs everything we are doing she proves to us again that she really does.
6. We had med supply deliver 3 cans of formula last week to see if insurance will pay. Well we went to use it on Tuesday night and figured out they sent us Elecare Jr instead of Elecare infant. I called and they sent 3 of the correct cans yesterday. While I was on the phone with them getting it sorted out I looked on our insurance website and found the EOB for Lydia's formula and found that insurance paid it all in full! They are covering formula!!!!!!! Today med supply sent us the rest of the formula we need for the month! Huge praise answered!!!
7. Tomorrow our referral for Ronald McDonald house goes in and we should hear soon if we are able to stay there for the girl's surgeries.

Brent:
-Brent's surgery went well yesterday. The doctor said his tonsils were very large. He says his throat is more scrachy then anything and it feels like there is something stuck in the back of his throat. The pain is doing well and he says that he had throat infections that felt worse then this. He also said that he can feel how much better he is breathing. That you to everyone who prayed for his surgery.

We have had multiple people ask us how they can help lately and we are so humbled and honored that people would want to help us. When I get asked this I'm never sure what to say. Brent and I struggle with asking for help (maybe God is trying to work on us with that one) and we know everyone is so busy and have so many things going on that we don't want to impede on anyone. We also know that everyone has stuff. Everyone has hard things going on in their life. We also know that resources are limited and we know there are so many people out there that need so many things. Thats one of the reasons it took us so long to sign Jilli up for state insurance, because we know it is a limited pool of money (however at that time we had a different primary insurance company that did not pay for formula and had a lot of prescription costs not covered, over $300 a month just for Jilli, on top of our high deductible and out of pocket max that we hit every year, that we had to do it, our new primary insurance is a lot better and we are so thankful for the state helping to pick up the things it does not for Jilli and thankful that we have better insurance so we don't have to use as many of the limited resources so others can). Brent and I were joking this week that maybe we are just too stubborn. Someone ask what we find most helpful and Brent and I both agreed that food is something we really appreciate. If Lydia is choking its hard to cook dinner or days where we are running between appointments and we are exhausted physically and emotionally. I want to say a huge thank you to everyone who has made us a meal or gotten us a gift card for food over the past three years. So if you are wondering how you can help and I have stood there awkwardly, our biggest help is prayer, followed by listening ears, and if you are looking for something tangible, food is always appreciated. It also means a ton to us when people donate to places that in turn help us and families like us, ie: Children's Hospital of Wisconsin, Tubie Friends or Ronald McDonald House.

Ok, So I will admit I started this post on Tuesday and it has taken me 2 days to mentally be able to write that last paragraph. I don't want to come off as asking for things or begging. I've pondered for a long time how to answer that questions and I really hope that came through. And if we are stubborn accepting help for something you know we need remind us to stop being stubborn

Well im going to go back to cuddling a baby now (she is not sure is she wants to be awake or asleep) and listening to Jilli play. Brent is up taking a nap and I am pondering what soft thing I am going to make for him for dinner. Eventhough Brent is healing right now, it has been nice having calm family time the last two days. Last night we all curled up and watched Zootopia as a family. Tonight Jilli is begging for a board game after daddy wakes up. We will see if he is feeling up to that.