Tennessee.... 2021

I haven't posted in a while due to trying to move and finalize all of the things to close out the last chapter in our lives and move forward in this new chapter. The move I will say has been extremely difficult. I have had a lot of ups and downs but I have learned as a mum with a beautiful Special Blessing I am not allowed feelings or at least not to show or express b/c others always need me more than I can ask for help myself. Sometimes I think the feelings that build up inside of me are paralyzing. But I find some way like in the Doman Program to drop myself so I use another part of my brain to process and pull out of the paralyzing state.

Liam is doing well here so far. We have our GREAT new close friends Danielle and Larry with Liam Kleefstra Brother Gavin to thank for a lot of the success here. They gave us their pediatrician who helped diagnose Gavin. He wasn't taking new patients but he agreed to take us on. We also were very blessed he had a cancelation that day at 2 and we drove up to his office. Low and behold within 24 hours this precious doctor had liam appt with every specialist and doctor we have been trying to get into for over 2 1/2 years. CRAZY how something as simple as findin a doctor that can write his own referrals and have a TEAM that actually helps them can do wonders. I wouldnt trade our pediatrician in TEXAS for anything Kelly went above and beyond to always do everything for us. The only problem was she had a BIG hospital that got a little too big and patient care and taking care of things in the back office was a low priority just like their billing! I wish I had Kelly on the team here b/c she would be an asset with her love and compassion and it is sad that as good as Scott and White is in the hospital where we had Liam and even at McLane it is the back office that really hurts the wonderful doctors they have. IF they don't watch they will lose the good ones... I have seen many leave due to the fact they weren't allowed to basically "CARE" anymore! you are a number! Anyway back to the topic at hand.... So liam has seend the Othomologist and now has extremely thick glasses ... They are wearing on me and he is getting used to them. He went to Audiologist and they want to do a sediation test b/c his right ear isn't triggering just right and they said they could get him fitted for hearing aid that could help with speach developement if that is truly what is going on. He is not hearing "s" properly. So we need to schedule that. The ENT took out the lodged ear waxed tube out and all the excess in the left ear and said his ears looked really good. We saw Caridologist here and she did an EEG and Echo and told us that his heart was beautiful and the PFO in his heart is not going to cause him any problems she can see. She told use she was releasing us and that if we did ever need her she would always be there. Upon leave the front desk gave Liam a little blue box. I didn't think much about it but when we got hom and opened it was a stuffed animal from send a friend. Doesn't look like the hospital really gives those out but they did give him one. This organization donates money to the hospitals when other people order them but doesn't appear they give them the boxes to give to patients. Dont know why they chose us but glad they did it truly made my day and liam lit up as well. Vanderbilt Childrens is amazing the people in there are amazing. The parking not so amazing lol... WE are going to Speech Augmentation on Mondays OT at Vanderbilt on Tuesday and OT and PT at High Hopes on Thursday. they have canceled a few appt on OT and PT but hoping things get back to normal coming this week. I just still dont understand how my home state couldn't have done all of these things for us there! Would have been so nice to have been home thru all of this with the support system but I guess God had a plan for us here and knew we would stay in our rut if he didn't push us. Life here has been pretty lonely especially since my cousin Mary and Vicki Moved back to Arkansas.

I have met a GREAT new friend name Catherine.. Shes amazing and nice to finally have someone close by that I can snap or run by and see or vise versa! She used to be a Special Blessing Teacher, which is huge b/c 1. She understands and 2 ... I might have a solution to schooling (shes's still thinking about it lol) I am still begging !!!

I am working with State Farm and finally getting the hang of things... Working remotely is very nice. I get to talk to people in the am so I finally get to use words and have someone actually talk to me as well instead of me talking to the wall and getting no response! Pretty rude of my house not to talk to me but oh well! right... I applied for Disability for liam and he qualified based on our income but Chris Truck put us over the threshold on assets so they denied him for any and all help .. Our insurance wont cover diapers so we are basically trying to figure out what direction on that. I got a handicap placker form from the doctor to help us with the parking at Vanderbilt considering the parking is awful and parking on the 5th floor and getting liam to walk when the storm is nuts and we have to walk so far well it wasnt pretty and he is 52 lbs couldn't carry him and can't drag him.... he doesn't fit in strollers anymore need a bigger one but there again it is a big expense. So the placker will help where we can park at the front and help with a lot of the laying in the middle of the street issues. Yes you can treat a nuerotypical child different in this situation a special blessing well threats dont work. and i could take his game , or stuff animal away but he doesn't understand it is becaue he laid in the middle of the parking garage he is smart on games, computers, books, etc but this is a little different . (but sure most people wont get that either) Who cares I guess I should say but i do care what others think and it is stupid b/c they have no clue and the judgment well they have never walked in this journey so they shouldn't even have an opinion. Real friends are supportive not judgmental. Ive learned so much thru this new life and I honestly love all I am learning from Liam I just get upset when I know I can continue to pour the work in and he will succeed but I just worry about him if something happens to me. I know his sister will love him but I don't want to disrupt her family not that liam is a disruption but it is a different life . Diapers, dressing, feeding , bathing a bigger kid isn't like a baby! and Liam loves to tease and run off and laugh when you can't catch him. Back and forth his room to ours ... he is a mess! But a precious mess. I just don't want to fail him !

The weather is raining a lot here in Tennessee but it is cooler so that is a plus although the yard is driving me nuts .... I mean nuts!!!!!! And of course our new mower we bent a blade again! ugh waiting on parts then waiting on chris to be off to install parts... By then I have a full on jungle and no way our mower will be able to do it. There again living in a town where you don't have a lot of people to talk to you don't have contacts. I am so used to being the go to for anything and now I need that person here lol.

Tennessee is beautiful, the air is clean, the view is amazing , love the green, trees, and just the whole atmosphere. I miss the thought of home, I miss the people who counted on me. Being needed was something that kept me going. I know Liam needs me but feeling like others needed me. I havent found that here. Not that being needed is always good but it does make a person feel good. Chris has a GREAT job he is busy and learning a lot. He applied for School to move forward in his career. He is tired a lot though seems i see less and less of him. He gets 8 days off or 4 days off but he is so exhausted he sleeps pretty much the whole time off and then he is off to work so sleep all day work all night.

I wish I could get into the vitastem program here so we could continue with Liam speech seems that really helped but so far i havent figured out where to go or how to get that therapy. I have been waiting on the device since Feb 8, and it is now April 10th. Insurance is a joke. Doesn't appear they pay for anything that a child with disability needs without lots and lots of denials and appeals. So sad what is the point in insurance. And then being in middle class is a joke too b/c you don't qualify for any help to get anything so basically you sell everything you have to get what you need, do a fund raiser and people get tired of that too. So you pretty much either do without or keep on trying to find a way. Liam had to have covid test for his appt at napa and so did Chris and myself turned all in and guess what they denied Liams and paid $45 of mine and Chris's covid. Why deny his. The test was $130 so they didn't even pay half of it. Liam needed glasses they did pay for the appt to have his eyes tested but didn't pay one penny of the $587 eye glasses. Crazy considering they pay $150 for ours. Liam has met his deductible for 2021 but appears that means nothing when you are not neurotypical. so now we have co-pay to pay. We are close to out of pocket family deductible $7500 and then we will still have co-insurance. plus our premiums. I always wonder how people deal with all of the insurance stuff. I feel it is always a fight . Some people are way better at this fight than me. I will fight for liam forever but it seems like they make it very hard to win! I always feel like just his love is the winning factor in it all but I hope and pray we can accomplish some basic stuff so if something ever happens to Chris or myself he wont be so hard for Joy & Walker and they feel like they can help him . So to make this long story come to a close for today... We are in therapy... progress is being made (very small babysteps) But Babysteps are better than no steps at all and since we had to wait for so long I didn't expect it to be overnight I can't change the past but hoping i can change the future ... my wishes are we can find some way to change something to make this process easier for another family one day.. It is sad for children with rare diagnosis to not get the same care that someone with something more common has. We need the same love, compassion and therapy... being denied over and over hurts. We deserve progress just like another diagnosis.
I am Thankful to the people who love our liam like us and are willing to go the extra mile to help us. Shay from Napa was truly the biggest blessing and is the reason for a lot of our success so far. Without her Liam wouldn't be saying " Liam" .. I will never not give thanks to the ones along our journey... Those people deserve the praise and Glory so they understand and know how they impact people ... Most are never thanked... I will make it my goal to always let the ones know who have empowered and helped us grow.

Thanks for listening, Thanks for helping, loving and caring for us

Michelle Mum Blog April 2021