Fiesta a la Hacienda

Hello, my loyal followers :) I have not abandoned you. It's just that nothing has changed in the past few weeks to update about. But here I am now! You're welcome.

Monday the 21st we had our HACIENDA GIVES BACK and it was SO awesome to see all of Maddie's supporters. So many co-workers came out, friends, Tyler's co-workers, acquaintances and even people who just heard of the event. Even people texting me asking for a gift card since they couldn't make it, people who came up to me at work the next day because they couldn't make it and made a cash donation, a family I haven't talked to in a few years asked me which location, then showed up! Her receipt collection box was full by the end of the night and it was so cool. And honestly, I don't say that because of the financial burden it is helping with, although we are 100000% grateful for that, but it's because people just care. Maddie screamed like a banshee almost the entire night-not out of anger-but because she loves to hear her own voice echo, and every single head in the building turn to look at her. I tried to talk her out of it and failed. For that, I'm not even sorry :)
We should get the "results" for lack of a better word, of our HGB night in 3-5 weeks. But I know you all rocked it. Thank you.
Also, a mega-special thank you to my MIL, Penny, for putting this on for us. She spent a lot of time gathering orders before and distributing tokens for us. She even camped out in the lobby all day to welcome and thank people who attended before I could get there to do it myself. Mimi's the best!

Maddie's next procedure is the bronchoscopy this upcoming Monday, July 28th. I'm told the procedure is only about 45 minutes and recovery is a couple of hours, so I'm praying everything goes smoothly and we are released to get the MRI to get Miss Maddie on her way to good hips! She's been almost running lately and she turns corners, pivots, squats down. It amazes me how normally she moves. Girl's determined.

That's all for now! Will update again post-bronchoscopy :)

Megan

http://www.youcaring.com/medical-fundraiser/miss-maddie-s-walk/185124

Back to normal....

...and it feels GOOD! :D

After I typed out our last blog update on our way home from Indy, I talked to my mom, cried myself to sleep and woke up somewhere around Terre Haute with a clear mind and the ability to reason came back to me, thank goodness. Nothing has changed, except my attitude about it--which really relays through the rest of our family. I don't want to bring anyone down with me so I knew it was important to chin up!

Anyways, Maddie is doing GREAT....she's fully recovered from the breathing episode we had. Reading back, I don't think I explained that very well. I typed that update on my phone and my thumbs have never had such a workout.
After we got into the recovery room, Maddie's throat started swelling from being intubated. They gave her a special breathing treatment that cleared it up within minutes (racemic epi if anyone is a fellow googler). She was calmed down and super snuggly. But since she got that special breathing treatment, we had to stay for 24 hours after her dose for observation to make sure she didn't need another one. We had a follow up appointment with our ped here at home today and finally got to catch her up to speed. My personal opinion, and our pediatrician agrees, is that Maddie has asthma. Our ped explained that usually at this age, asthma is indicated by 3 wheezing episodes in a certain amount of time--which Maddie exceeded. BUT, she also said that at this age, asthma is a strong diagnosis because most kids outgrow it by the time they are 6 years old. The anesthesiologist we worked with at Riley said that next time we probably need to treat her like she does have asthma, for surgery sake. They would have given her a steroid before intubating her that would have relaxed her throat so this wouldn't have happened. But thankfully the doctors at Riley are awesome and responsive and were able to fix Mads up pretty quickly.

So yeah, our 18 month old, with 2 dislocated hips, is WALKING...ON HER OWN! And it's so awesome! That girl is super headstrong and determined. I have complete confidence that she will rock whatever is thrown her way with that Maddie attitude. It's so cute to watch her work on her balance, moreso than other new walkers do. Imagine trying to get a string puppet to walk on it's own, pretty much the same thing since her leg's aren't connected to her torso with bones, like the rest of us is held together. And big sister Aubrey is so stinkin proud of her. She will get in front of her and encourage her: "come here sweetie, you can do it!" Then Maddie walks to Aubrey, Aubrey picks her up and they hug and celebrate. EVERY. SINGLE. TIME. Sometimes I wonder if having kids is supposed to be this awesome.

Aubrey is doing great with this--I know people worry about her too and how she is handling things. I can assure everyone that Aubrey is just great. She has a lot of people around her giving her extra love and explaining everything to her. She doesn't do the sugar-coated, typical 4 year old response you are inclined to give, either. No sir-ee. You try and she will call you out on it because she knows more than that. I've always been the honest mom with her--she's a very very smart little girl so I don't feel the need to drop things down a level for her. She will do great things in this world, along with her headstrong little sister!

Tyler and I are also doing good. Coming home did our family some good, got back into a routine of things. Thank goodness he was there when I woke up from my mind-clearing nap and talked me through things.

Now I will include some pics of Maddie before and after surgery...what a trooper this little thing is!
Please note, the "cast" on her arm is to protect her IV from being yanked out by her other free little mitt, as I lovingly call her hands. Maddie thinks it's a weapon and uses it as such. The girl has quite the swing.

Pre surgery, in her little surgical smock :)

Day after "surgery", debating on who to take a swing at next.

Ride to the car after discharge! Sucker and all :) Yes, they are wearing matching dresses. And yes I'm jealous that I don't have one to match them.

So we received official notification that Maddie's Walk will be the recipient of 2 NEW organizations/fundraisers. Gibson County Gives Back will be writing a check to Maddie's Walk sometime after August which is so amazing. Also, the Masonic Riders Association out of Evansville is hosting a motorcycle run for Maddie which sounds really awesome! It will be held Sept 13th, location TBD. Anyone with a motorcycle can ride, so feel free to sign up! Registration is from 8AM-10AM the day of the ride. I will provide location details as soon as I have them. 

Thanks to everyone for your prayers and concerns for sweet Maddie....we are getting through this one test at a time. I have a feeling the bronchoscopy (scheduled for July 28th) will be just fine and we will be on to the MRI in no time.

Blessings-
Megan

Miss Maddie's Walk-YouCaring donation page

Hacienda Gives Back -- East side location on Green River Road -- July 21st ALL DAY. Token is listed in previous post.

Post surgery update

It has been a long 2 days. Lots of information to process. Starting from the beginning:

We check in yesterday at Riley at 9:30 and Tyler,  Maddie and I were taken upstairs to pre-op. We were in there for about 45 minutes where we changed her into a little surgical gown and socks. The anesthesiologist listened to her and nurse asked us questions about Mads. Then a nurse came back and took Maddie back to surgery. Maddie did so well which made it easier on us, but let's not kid ourselves here-that was hard. So we get the family and go to our surgical waiting area. The nurse is supposed to come update us once an hour and it is a 4 hour surgery. Not even 10 minutes in and we were called by the nurse: Maddie was fine but he looked at the arthrogram (x-ray with contrast) and our surgeon wanted to talk to us. We pretty much fly up there and wait for him to come out. He first says "Maddie is fine but this is something I've never seen before, and I've done a lot of these." It turns out that Maddie has a bunch of unknown tissue between the ball and socket. He isn't sure if that is vital tissue like cartridge or if it's fatty tissue that can be removed. Also, Maddie's sockets are smaller than normal. So 2 challenges we are facing with her hips: 1) what is this tissue and can it be removed? 2) will the ball even fit into the socket? So before our next hip surgery to correct them, we have to get an MRI which she will also need to be sedated for. Which brings me to the end of day 1, and why we stayed overnight.

After Maddie woke up from her surgery she was obviously upset, but I noticed she was pulling pretty hard to breathe. They ended up giving her a racemic epinephrine to help with the swelling of her throat, caused my being intubated during surgery. Since they did that we had to stay overnight for observation to make sure she didn't need another treatment,  which she didn't thank GOD. Usually 1 treatment knocks it out so I would have worried if she needed another. We were sent home with steroids to help with the swelling. She does sound so much better today. The pulmonary doc came by this morning and let us know that they would like to broncoscopy before she goes under anesthesia again, to see if there are any biological abnormalities that would have caused that reaction to being intubated. Once we get the all clear from the pulmonologist, we can schedule the MRI to see if correcting Maddie's hips are an option.

Seriously, I know it can be worse. I saw worse while we were at Riley. But this is hard. Momma is struggling with the new revelations each day, new surprises and new struggles. The hip dysplasia doesn't bother me right now but her breathing does. Maddie is just perfect to me so I hate that she has to go through these things. Maddie is also slow at gaining weight and has only gained a little over a lb in 3 months. I don't know if that's because her body is busy fighting another issue that we have yet to find or if that's just how she is. Her sister was slow to gain weight and really ramped up around age 2. All of this combined just has me all worked up and worried. We are on our way home now so maybe being home will help me:)

Thanks to everyone for their support. Maddie has a long road ahead of her-this week didn't go how we expected at all.

Megan