Super slacking!

Guys! I have left you hanging! So sorry, especially to those who do not have Facebook. I shall do better. To try to make up for it, this post is pic heavy.

Since my last blog update, I shamefully admit that Maddie has had another open reduction and 2 closed reductions. Let me break it down for you...

Open reduction #2:
November 11th
Surgery could have gone 1 of 2 ways, as told by our surgeon: we were either just getting a cast change or we were fixing the left side while we were in there. The right hip had to be very stable in order to operate on the left hip. Meaning, once he took the cast off, it had to stay in the socket--when they operate on the left side, they tilt them so there is pressure on the right side so that hip has to be stable to support the weight without dislocating. So we kept waiting for a nurse to come out and tell us that it wasn't stable. As time kept passing, we got more hopeful that the right side was stable and sure enough, nurse came out a couple of hours later and they were able to work on her left hip! We were so so happy! Hospital stay was fine, she didn't have hardly any muscle spasms this go round which was great--they were really a trouble to her the last time. We were discharged the next day, and when we got home that night, all she wanted to was to get down and play, as soon as we walked into the door. This alone made me the happiest of happy moms everywhere. She was already adjusted to having the cast so now we just needed to keep up with her pain management so we weren't chasing it all day. The rest of the week went well--Tyler and I were home that week and it was nice. She needed lots of snuggles and I was happy to give them :)
Before we left the hospital, she had a CT scan done--it showed that the ball wasn't just exactly in the socket where he needed it. If it stays in the wrong position for too long, it can wear on the socket poorly and do more damage than good. Dr decided to let the swelling go down and have us back up in 2 weeks to do a closed reduction (basically just manipulating the leg into the hip correctly). They would take the cast off, reset and put a new cast on. Outpatient procedure-there and back the same day. We were kind of bummed about this, but took it in stride like we always have. One step at a time, literally.

Closed reduction #1:
November 24th
(I don't have any pics from this one, you'll read why...)
Once we got home from her last surgery, she's been uneasy. She flinches when I pick her up, like CAREFUL MOM! She doesn't sleep for anything--wakes up every hour or two through the night. Naps OK, but not great. Overall, she just seems uncomfortable. I wouldn't say she's in pain, but those who know Maddie, know that she's acting differently. Not to mention, she had A LOT of anxiety on the drive up to Riley and on the pre-op unit. She screamed, cried, took swings at me. It was painful to see. I was helpless. I apologized to her, told her we were helping her to walk and that I was right here with her. Then made a mental note to try something different next time we are going up. So, we get up to Riley to have our closed reduction and let him know what's been going on. He said he will take a look at her skin to see if she's developed any irritation under her cast, but otherwise he is not sure what would cause it. Typically DDH patients don't experience any pain, or so they say. (I can tell you now that that's incorrect, I think we are told that to ease our ever-loving minds.) Her procedure didn't take long, maybe an hour. Dr comes out: Maddie's hip was COMPLETELY re-dislocated--even while she was in the cast. He was stunned really. And he wasn't happy. This man takes his work very personally and I could tell in his demeanor that this was a blow to him. Maddie's DDH is very severe and 1 of only a few in the US that has been seen by the 2 doctors we consulted with. Fixing her makes him a ROCKSTAR, and he deserves every ounce of it. So he moved her legs around and he said it seemed to settle in correctly when her leg was out to the side, like in a squat position. So he casted her up and crossed everything crossable that this stayed. He still wanted to see us back in 2 weeks to adjust even better and to make sure it stayed put.
We went home, and by the grace of God, Maddie was AWESOME! She slept through the night for the first time in over a year, no cranky baby. She seemed comfortable. I just knew that finally, Maddie's hips were corrected. We may still have several weeks and even months ahead of us in a cast, but to have Maddie be herself was such a relief. I mean think about it, since birth she's likely had some sort of discomort, tightness, strain on her legs. But now she doesn't and it shows. She's never slept well, but now she does. What a lightbulb moment that was. Her and I sleep together and she knows I'm there--she will wriggle her little self over to me so she can feel me. And then other times she takes her little mitt and shoves me away. And I love it all :)

Closed reduction #2:
December 8th
I distracted Maddie during the drive this time, danced up to the unit and did all kinds of silly things. We read her a book called Hope the Hip Hippo which is about a hippo with DDH. It's a wonderful book and I really think she understood it. Great illustrations for little babes. She laughed, hardly any tears. We did well this time! I told our surgeon that I felt Maddie's hip was healing well and how much she has improved since he readjusted her. I just KNEW that we would get good news.
AND WE DID! He said her femoral osteotomies (where he took out notches of her femur) were completely healed and the hips were still in the sockets!!!!!! PRAAAAISE GOD!!!!! It didn't even hit me that we were finally on the uphill until I talked to my dad on the phone and told him the news. Saying it out loud made it so real and I saw the light at the end of the tunnel. Plus, I could hear the relief and pure JOY in his chuckle and lack of words. So we got Maddie a pretty light blue cast for Frozen that we will decorate with snowflakes and glitter. Got a picture by Riley's giant, gorgeous Christmas tree, and headed home. Dr wants to see us in 4 weeks for a bilateral arthrogram (x-ray with dye in the joint--the dye tells us if the ball is in the socket evenly...if there is a pool of the dye, we know it's not sitting correctly.) and cast change. Not sure what the plan is after that, he's wisely not making one because the last few times we have had a plan, it's changed. But honestly, so happy with this news, I'm OK going appointment to appointment for next steps.

I am so extremely grateful lately and I don't I relay that well. Our parents have been awesome--Mimi and Poppy didn't get to cruise this year, my mom has missed work to come up to Maddie's surgeries, they cook for us, take Maddie to calm her down when we have both had enough, watch the girls for us while we work, take Jamie and I shopping for a nice girls day/sanity check. My co-workers/friends have covered my desk for me so I don't have to worry about it when I get back, and they do a great job. We get so many calls and texts and checkups on how Mads is doing. None of it goes unnoticed. These past 6 months have been stressful for everyone, not just Tyler and I. Our lives seem like a mess and a blur on most days, I look forward to slowing down and regaining order to it. One day at a time:) So, this holiday season I'm really feeling the love and want to share it! I wish we could send you all on the vacation of your dreams to thank you all. But for now, you get our well wishes and prayers for blessings.




We hope you all have a super Merry Christmas and a Happy New Year! Cheers to 2015!
Here are some pics of our holiday celebrations :)

Love my daddddddd

Open up!

Chef in training.... Aubrey, not Mimi :)

<3

Dress like a Christmas decoration at school today

One of the rare occasions Maddie was using her candy to decorate the house instead of eating it.

This is Aubrey's Ginger-Bride, on the right. So cute!

Post surgery update--2 weeks in

By now, most of you have had a few updates about Maddie. For those of you who don't have Facebook or want more details, this goes out to you :)

Starting on surgery day.....

I'm not even sure why we went to sleep, we only got a few hours and then actually slept through our alarms. Both of us! Family woke us up, thank goodness, and we got all 4 of us out the door in 20 minutes which is pretty dang impressive. In July, we had actually done all of this all the way up to passing her off to the nurse for surgery, it just lasted a whole 10 minutes before they called us to come back up. So we were pretty familiar with how the morning would go. We snuggled, watched cartoons, and then she went to surgery. A nurse came by and updated us every hour which was awesome! And not just a generic update--she gave us details. The surgery was supposed to take 4-5 hours and it ended up taking only 2 and a half. Super awesome relief there. Everything went well with her procedure--she was planned for a right side pelvic and femoral osteotomy but only ended up having the femoral osteotomy. Her surgeon said that with as much cartilage that was in her joint, he was afraid that if he had done the pelvic osteotomy and crafted a socket out of her hip, that it would have been shoving something too big into a space that's too small for it and it would have popped right out--no fix. So, they notched the femur to bring it down where it needs to be and casted her up. The x-ray after looked so pretty :)

Then he gave us such awesome news, it actually made me speechless.

Our initial treatment plan was: surgery-cast 3 months-cast vacation 4 months-surgery other side-cast 3 months-plates and screws removed after a year. So we were looking at about a 2 year plan here. I asked if he would be doing a cast change, and assuming all heals well with this side, he will be doing a cast change at 6 weeks and then doing the left hip while they are in there. I was almost in tears I was SO HAPPY. The fact that they plan on making the corrections in 1 cast is so awesome. Less stress on Maddie to go through it all again and shaved about 7 months off of our treatment. So, let's pray that our 6 week appointment shows some nice healing. Second surgery is slotted for November 11th.

So we come home and it makes our stay in the hospital look easy peasy. Coming home was a big adjustment for us. She was super clingy to me, and rightfully so. We stayed on her pain meds but she was starting to realize that something was different. She wanted to get down and run, wanted to play. Didn't want to lay down on her back all the time. But I tried laying her on her belly and she thought I was the devil. I've been screamed at and cried at a lot. She was tired of me but only wanted me. Saturday I had several breakdowns right along with her. My poor family-God love them-they were great. I know they didn't know what to say but just them being there was so comforting. When I woke up Sunday, I told myself to rise above the emotions, take a freakin' shower for crying out loud, and use your head. Ever since then, Maddie is more tolerant of trying new things. She actually layed down on her belly that day and gave us her best fish face :) She ate a meal for the first time in days. I got her to play with more toys. So, each day is better than the one before...this really is a take it a day at a time kind of thing we have going on here. The only thing I plan right now is meals and even that falls through sometimes! If anyone has any super crock pot recipes for a meat loving family, share the love.

I know everyone is wondering, and diaper changing really is SO EASY. I will admit that the first dirty diaper in the hospital, I still hadn't moved her yet so I ran like the dickens right to the nurses station to let them know my daughter had pooped and I wasn't cleaning it up. They laughed at me and showed me how to do it. For those who find this blog on google or follow me because they are preparing for this, here's how we do it......tear the tabs off of the diaper. They are just bulk in the cast and I would bet they are scratchy. Pull out the front of the diaper, clean up, then work the new diaper in there. The cast was super tight at first but now that swelling is down and the padding is compacted, it's much easier. Flip the babe over, take out the diaper, clean up, then put new diaper in there. Make sure you have a diaper in front and back at all times in case of an accident while changing. It's like tire changes in a Nascar race if the diaper falls out when you're flipping because you JUST KNOW that's when they will decide to pee. The hospital gave us diaper straps which are pretty much the best invention ever. It holds the diaper in place really snug. If they don't offer them, I would ask for them. Same deal at night but we use a Poise pad inside the diaper for extra protection. Two weeks into it now, my arms are stronger and I'm betting when her cast is off, I'll forget and tear the tabs off of the diaper :)

So, curiosities satisfied for now....any questions? :)

We are venturing out of our bubble at times, mainly to family or to run errands. She wasn't sleeping all that soundly but then we brought her a bed from my mom's house and she slept soooo well last night, so hopefully that is getting back to normal too. Crib mattresses aren't all that squishy and when you're confined to a cast, you probably just want to sleep surrounded by pillows. This mattress is pretty cushiony and you can tell by the way she just snuggles in there.

November 1st is Maddie's Walk Dinner/Dance at Princeton Country Club. I would LOVE to see all of Maddie's supporters/followers/prayer warriors there. We have tons of items to raffle: ping pong table, Foosball table, hand painted child's rocking chair, Brighton purse, lots of gift certificates to restaurants and Evansville nights out. There will also be a 50/50 cash raffle. BBQ dinner will be served at 6 and a live band plays from 7-11. It will be a great time to see the princess herself and get the kids together to play and dance the night away! Tickets for adults are $12 and children 6-13 are $6. They are on sale now or can be purchased at the door. If you will be attending, please let one of us know so we can get an estimate for food. There is an event created on Facebook that you can RSVP to. Let's make this a successful event for Miss Maddie!

Now, here is the photo bomb you have been waiting for. 

Ahhhh...sister lovin' right out of surgery--Aubrey is so awesome. These girls...

Cast Clinic did an awesome job with her cast! The bow is fiberglass like the purple, so it's on there good!

Discharge day! She didn't want to take any chances with the paparazzi.

So this is Aubrey's creation...I asked her to take Maddie for a wagon ride around the house. I turn around, and she has LOADED the girl up! The dog serves as a shade to keep the sun out of her eyes. I asked.

The longer you look at the picture the funnier it gets.

See?!

The famous fish face. THIS is our Maddie :)

Peace, love, and fish faces,

Taylors

Author of never-ending post: Meg

Surgery it is

May as well get straight to the point....title gave it away!

Our surgeon called earlier this week to let us know that after consulting with the surgeon from Iowa City, he believes the femoral head will go into the socket. And the surgery is now scheduled for Sept 30th....

Whoa doc, pump the brakes.

Two weeks ago he didn't think this was possible so momma here has written off surgery...and let's be honest, we were fine with that. I would venture to say HAPPY about it. (Selfish, yes.) Surgery is a scary thing on your little babes!

Enter a craziness of emotions. I was ready to book that surgery right away. This is what we wanted from the beginning, right?!

Then I started thinking. Bad idea. Mommy brains should never be left unattended.

What if this surgery made things worse for Maddie? I mean seriously, she's walking now, she's fine. She's even "trotting" a little and walking up stoops. Still no stairs, but considering the condition of her hips, I'm AMAZED she is even walking. Ty and I talked through our concerns with each other and our families: if she doesn't have surgery, how limited will she be? Will this cause issues later in life? Then we called our surgeon this morning to talk to him. I'm pretty sure we were ready to commit to the surgery unless he said that it could do more damage than good, which thank God, he didn't. It's a pretty small chance surgery could worsen the problem. The plan has changed slightly in that she will be in a cast for at least 3 months instead of 6-8 weeks. This is one of the most severe cases of hip dysplasia that our surgeon and the Iowa City surgeon has seen, so he is taking extra precautions to make sure everything heals where it should. I think this is to our advantage in the long run. Not that he wouldn't do what he should do in surgery, but now I think he will think outside the box to see how he can correct her hips for the long run, pun intended :) Cast for double the time, I'll take it. No doubt it will be hard, but it's okay. She will be in a cast for Halloween, her Maddie's Walk Dinner and Dance, Thanksgiving, her birthday and Christmas. Prime holiday time. But that girl will be completely adored all season long and will shine in the ton of pictures I will take. Aubrey will grow into this supportive little nurse for Maddie and Santa is bound to notice how awesome those girls are.

Still thankful it's just hip dysplasia.

SO, back to getting in the mindset of having surgery again....and not that much time to prep. When I talked to Maddie about it, she nodded her happy little head and spit some cheese out in my hand (which was weird because she loves cheese).

I will be stocking up on sweater and long sleeved dresses since she won't be able to wear pants. Moving some furniture so we can pull Maddie around the house in her wagon (which she will LOVE). Upgrading her bed to a big girl's bed (at some point) so we can get some comfortable sleeping arrangements worked out for everyone. Putting my anxiety to good use. And loooooving our girls.

So, there you have it. Please don't forget about the dinner and dance for Maddie on November 1st--she will be there rocking her new gear and would love to have tons of visitors to see her.

Love you all

Meg

Our fabulous surgeon called this morning. I have a special place in my heart for that man.
The tissue that is in Maddie's joints is cartilage, and there is a lot of it. To recap: If they take the cartilage out, that removes the cushiony material in her joints, thus giving her arthritis at the age of 2.
He also said that even if he could get the femoral head in the joint, it would likely slip out due to the fact that Maddie's sockets are almost non-existent. She just didn't form them (both hips).
Enter Dr. Stuart Weinstein--the Internationally renowned pediatric hip guru. He is from Iowa City. Our surgeon, Dr. Loder, is going to send Maddie's films to him for a consultation and we will be hearing from him in a couple of weeks based on his findings. He may be privy to some cutting edge hip dysplasia treatment for rare cases like Maddie. I look forward to hearing from them.
For now, I'm breathing normal again. I don't jump every time my phone rings hoping it's Riley with results. I am not taking the phone with me to the restroom in case they call so I don't miss it (how I would have managed that, I'm not sure...pee quickly???) Our family loves our sweet little Maddie. That is all :)

I also wanted to announce our best and most fun fundraiser to date: Maddie's Walk Dinner and Dance! The event will be on Saturday, November 1st at Princeton Country Club starting at 5PM, ending at 11PM. We will have a 50/50 drawing and items up for raffle as well. We have a LOT of awesome donations that came our way for this event: lots of restaurant gift cards and a super awesome 39in flat screen TV that was donated to Maddie's Walk! Tim's Awesome BBQ is catering and will include BBQ, baked beans, potato salad, bread and drink. Cash bar will also be available. Music will be provided by Randy Scales and Descent. Adults are $12, children 5-10 yrs are $5. Under 5 is free. I REALLY REALLY hope to see many of you there--it is going to be a blast with all of the kiddies dancing and just to be surrounded by so much support will be awesome. I mean, we all know when you get our friends and families together, it's going to be a blast: it's cheaper than a wedding present, you don't have to dress up, and it's for a super great cause :) Tickets are on sale now and they're pretty cool looking, they kind of match this blog!:) Get ahold of myself, Tyler, Penny, my momma or sister and we will get you taken care of. Thank you all so much for your support, prayers, donations and ears to listen to my rants on bad days. I pray now for clear minds for the surgeons looking at Maddie's films and for blessings for all of you.

Can't post a blog without mentioning Aubrey! The girl is rocking pre-school and comes home every day teaching us what she learned. She also changes Maddie's diapers if I'm in the middle of something, and I don't even need to ask her. I imagine it's much like wresting a little piglet down onto it's back, but when I hear both of them giggling in the living room, I pretty much know what's happening.

Short and sweet today, just like Maddie :) I'm just feeling calm and can't wait to get home to hold my girls.

Love
Taylors (Meg)

P.S. There is an itsy bitsy teeny weeny spot for comments below if you have any questions or comments--Ty and I will answer them all.

Bronc Update

Update time :)

So I posted a small update on Facebook after the bronc last week, but here's the long version:
Overall, everything went well. Maddie did fabulous during the procedure and came back to the room smiling like she had just gone for a walk down the hall (HUGE change from the last time she was sedated, so this was super pleasant to see). I really liked the doctor who did the bronc and her anesthesiologist, too. The whole thing took maybe 30 minutes and the doctor was back in our room talking to us. They found that Maddie's vocal cords are webbed towards the back of her throat, Glottic Webbing, and also that she has Laryngomalacia where the tissues above her larynx (voice box) are softened and floppy, causing the tissue to fall over the airway and partially block it. Neither one of these are a serious issue for her. It does cause a little irritation while being intubated--which we know from her previous surgery that the doctor had to pull out of for further testing on her hips. But if the anesthesiologists are aware of it, they should treat accordingly. I told her anesthesiologist this time that she had stridor (swelling of the throat, causing issues breathing) post op and asked if they could give her a steroid this time to avoid having that issue again. They gave her Decadron and that made a huge difference, no breathing issues at all. The Laryngomalacia is something she should have outgrown by now--typically it's seen in infants. So our bronc doctor advised us to visit a local pediatric ENT to get their input. We were sent home with lovely pictures of Maddie's throat and abnormalities that he saw, along with his findings typed out so we will be taking her to the ENT on August 11th. We received the referral for a great pediatric ENT through Facebook love, so thanks Megan and Jenn, we got right in!
Just a little side note--the vocal cord abnormality is a congenital defect, which means it's most likely hereditary. This, she got from her momma. When I was around 12-13 years old, I started noticing a catch in my breath that sounded like a small gasp, and from what I understand, I wasn't sleeping all that well. I still have the small gasp to this day if you pay attention. Mom and Dad took me to and ENT and they scoped my throat and found my vocal cords quiver and don't open all the way. I had to do breathing therapy for a few months to "train" my vocal cords to open the right way. No biggie at all and I've not seen the ENT for years.

After the ENT, our next step is the MRI which I am super anxious about, along with all of our family and friends. This is the test that will tell us what that tissue in her joints actually is and if it can be removed. We are working with the hip guru from what I understand and I trust him completely. I'm not sure we will get the results of the MRI that same day or if he will call us to discuss. Heck I'd hang around Indy for the day if he wanted to take some time and consult with the radiologist and bring us in that afternoon or even the next day to discuss the results. I'm going to be a nervous, excited, worried, hopeful walking ball of emotions after the MRI, just waiting to hear from him. I'm already picking my nails while staring at the screen to compose my next sentence.

But here's how I feel about it, and I'm sure Tyler would agree with me:
Maddie is Maddie....I just love her the way she is, dislocated hips and all. I mean of course, that goes without saying. Selfishly, I'm OK if they find they cannot remove that tissue and put her hips back into place. It means less surgery which is nerve wracking to begin with. She could walk with a limp, she would likely need a hip replacement early in life, I'm not sure she would be up to par with her classmates on the physical activity side of things....but honestly, it could be so much worse. I have no doubt that Maddie is a tough little thing and can handle the challenges it would bring. If they can fix her hips, GREAT!!!! She can handle that, too! She's young and probably wouldn't remember any of it. I'm super ready for her to be in a cast and it brings a sense of excitement for me to think about it. I mean, I was ready for the cast a month ago this past weekend, she's supposed to be 4 weeks into it by now. I'm so grateful her surgeon is surgically conservative and didn't want to open her hips up without knowing what he was looking at. He could have opened to look but she would have a nice scar for nothing if they can't remove that tissue. Although it's prolonging treatment, she's not having anything done unnecessarily and I'm thankful for the great team of doctors at Riley that we have dealt with so far--we are impressed.

We went to the Owensboro Riverside playground and splash park this past weekend and oh my gosh, the girls had a BLAST. I highly recommend going for the day. Maddie got a kick out of stepping on the geysers and then waiting for them to shoot back up again. The first time, I was ready for it and got it on camera. Picture of the year. If the girl could cuss, she would have. But she went right back for more!

Family of girls, and LOVE IT!

I think a mothers/daughters trip to Holiday World is planned next, can't wait!!!

Aubrey starts school Friday. Pre-K. That's all I have to say about that.

Love and blessings-

Taylors

Miss Maddie's Walk YouCaring Fundraising Page

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

New gadgets

Happy Monday, everyone!

Since my last post, your huge hearts have brought in over $750 for our Maddie Fund. Every donation blows us away, I don't think you understand. I just keep telling everyone, "It's crazy. It's just crazy..." and then I fade off because I don't know what else to say. Loss of words is not something I'm accustomed to :)

I ordered Maddie's Spica Chair today! Here is an example of what it will look like, but the girl loves turtles so we got a turtle cutout on the bottom. We also picked out one that rocks because she is a rockin' fool! SO SO SO thankful for Ivy Rose Spica chairs for this creation. Now Maddie will be able to play and eat and sit up like normal. The tray pops out so we can sit her in there, then we lock her into place with the top. The top is also reversible and Ivy Rose creator will paint the other side with chalkboard paint so it will also double as an art station. Miss Aubrey may sneak in there a lot to play with that feature :) The turtle cutout allows room for growth and positioning if need be. It's also coming in unfinished so M's Aunt Jamie is going to finish it up for us. We can paint it and use wallpaper decals on it, easy to switch out, or anything we want to do really. But we will "Maddie it up" for sure.
I also ordered the high chair today, not as fun but still super exciting and really cute. It is actually just a travel high chair that slips on the back of any chair and we will use pillows or blankets to prop her bum up to allow for the bend in her cast. Maybe she won't notice the body cast with all of her new gadgets to play with???? Eh??

Now some non-Maddie/Fund/surgical updates:
We went to Huber Farms for Father's Day with Mimi and Poppy and the girls had so much fun! 

But not before destroying some push-ups for Tyler's Father's Day pictures. My inner photographer was crazy over them. Thank goodness these didn't turn out to be one of those Pinterest "NAILED IT" things...

And with that I will close out today's update, short and sweet. We should be receiving a call next week to get Maddie's surgery time scheduled. Right now we just know it's July 1st. They call about 2-3 days ahead of time to let us know what time her surgery is. I really hope it's first thing in the morning. Although small, Maddie is our little oinker. I would rather not withhold food from this little thing or she may claw my eyes out. 

Til next time!
Meg

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

www.thirtyonegifts.com click on events and Maddie's Fundraiser

This is going on until the end of June!

Taking a step back...and a step forward

Welcome back, friends! 

I wanted to take some to time to answer a question we get frequently: Why wasn't this caught sooner? 
First of all, I COMPLETELY trust my pediatrician...I have recommended her to several families and I will continue to do so. I think the world of her and always have. I think that you have to be this comfortable with your ped if you want a successful relationship. I mean, you're trusting them with your child's well-being. 
So, our ped is very upset over this, obviously. I know that she feels guilty and is probably questioning herself. But I'm not. Before we could even ask, both surgeons we have met have told us this type of dislocation is very easy to miss. Typically when there is a dislocation of the hips, there is an audible cue and range of motion just isn't there. Maddie's hip is so far dislocated that the ball and socket can't rub together to make the tell-tale "clunk". And she typically had normal range of motion. If she was tense, we attributed it to her being anxious at her well-baby visits. Although she crawled late, she did crawl. She had what we called "navigational rolling"....the girl could roll her way around this house like none other. She never acted like she was in any pain, until Mother's Day. I set her on my hip and she screeeeaaaamed and clawed the heck out of my collarbone. That's when mom insisted we take her in. (Thanks, Mom) Made an appointment Wednesday, Thursday we saw a specialist and Monday already we were at Riley. Which brings us to today. So, I am not upset with our ped at all, and I understand it's easy to blame her. But my only hope now is that she is hyper aware when she is checking her patient's hips now, maybe we can help another family with early detection. Plus, I mean what good will come out of being upset with her? Onward and upward my friends. 

I received an email from my fellow DDH mom this weekend, what a blessing she is to us right now. We plan on meeting soon and getting all of our kids together. I'm ready to meet her little one and see her progression!

Sunday, momma, Aubs, Maddie and I put some donations to good use! When Maddie is in the Spica cast, she will be very limited clothing wise and will be in dresses 99% of the time. Now those who know Princess Aubrey knows she loves her dresses. However, it seems that she didn't hit that stage until she was 3 or so because she doesn't have too many size 2 dresses. Enter Old Navy. Literally. The girl got hooked up for sure:) We also snagged a bean bag chair--it made an appearance on nearly every list of essentials that I have run into when caring for a babe in a Spica cast. So happy to get our girl all set up!!!

On top of even doing the 31 Gifts Fundraiser, Stephanie also made each of the girls goodie bags for 31 with their initial on the front. They loved them! Let's just say Aubrey comes by her obsession with bags and purses honest:) Anyway, HUGE thank you to Stephanie for just doing so much and for thinking of Aubrey too. Aubs is a super strong and smart girl for her age but taking time to make her feel special when most of the attention is on Maddie now just makes this mommy's day:)))

I plan on taking 2 weeks off--the whole week of her surgery and then the week after just to be home with her and cater to her. Tyler will be off the week of the surgery, going back the following Monday. With all of these donations, we won't have to worry about it being unpaid. 
Over the weekend we also got another very generous donation from someone I have never met....people are awesome. Seriously. What you are giving to our family is more than money. You're allowing us to focus where we NEED to focus right now: our girls.
**Update, I typed this out last night and since then, we've had another $230 in donations. Words escape me...

Now, I will leave you with this gem from the pool Saturday. You're welcome. 

All love, 
Megan


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

www.thirtyonegifts.com click on events and Maddie's Fundraiser

This is going on until the end of June!

Hello....But where are we now??

Hi all!!! Tyler and I have been wanting to start a blog with our thoughts, feelings, progressions on this journey. Friends, family, acquaintances, co-workers, COMPLETE STRANGERS have been SO supportive already so I want to make sure everyone has a way to stay updated. I post updates via Facebook, but I think this is going to be my outlet--Tyler will also be a frequent poster:) So, please subscribe to the updates for this page to stay updated.

***Heads up, I can get long-winded. Once I start typing, I just don't stop. Ask Tyler.***

So, where are we today? Penny (MIL) is currently handling fundraisers, getting us signed up for things, submitting applications for programs, etc and my momma (Jennifer) booked us 2 hotel rooms for families to stay at while we are up there--it will only be 2 nights post-op, so a short stay. Ty, Aubs, Maddie and I will be going up Monday (surgery is on Tuesday) so we aren't rushed the day of. I had called the Ronald McDonald House regarding housing, and after speaking with another DDH mom last night, what they are saying makes more sense. They have 6 units in the hospital for parents, and they are typically for critical care patients. They are assigned once you arrive at the hospital, so it's not something we can reserve. There is also a separate building that is the RMH, still on Riley campus, and it is typically for long term patients. I will be calling them today. The other DDH mom I spoke with last night said the RMH never reserves rooms, but once you get up there, availability typically is not a problem. Penny and my momma will be up there with us, so if Riley isn't an option, we'll just have to figure it out. Aubrey will be bouncing between us, Mimi and Memaw, so she'll be a happy camper :) The girl is so super protective of her sister that my heart will probably melt a hundred times watching her care for Maddie.
Thank God for our mothers, seriously, treat yours right. I can't tell them thank you enough for what they are doing.

A grade school friend of mine, Kendra, put me in touch with another DDH mom here in Evansville. We spoke yesterday and I think her and I will become good friends through this. Her daughter was about a year older than Maddie when she was diagnosed, so hers was a little harder to treat. I think we caught Maddie's JUST IN TIME. Any earlier and they would have tried braces which ultimately would have failed because of the severity of her hip condition, and any later and we would likely be facing more surgeries. So I'll sit here and thank my lucky stars that we followed our gut when we did.

Here is a link to DDH. Maddie is the dislocated one, and it effects both of her hips. Her left is more severely dislocated than her right, so that is the one they will treat first. Her surgery will be open, not a closed reduction, and they will have to remove a portion of her femur to twist the bone back in it's place without too much stress on her joint.
Man, after reading this site knowing what we know now, Maddie is ALL OF THESE THINGS. Hindsight is 20/20. http://orthoinfo.aaos.org/topic.cfm?topic=a00347

The 31 Gifts Fundraiser was a complete success! You all had over $700 in sales which brought in over $170 for our family! Seriously so awesome. I will be putting any open fundraisers at the bottom of each post for easy finding. I have inquiries about them often so I thought this was a good way to keep everything together. 
We are beyond blessed to have such supportive people in our lives. We already have 2 other fundraisers in the works for upcoming months, so keep your eyes peeled :) People have been stepping up and donating on our fundraiser site, sending us checks, and offering to do a "party" with their home-based businesses and donating the profits to us and it's such a humbling experience. I hope you all receive back 10 fold of what you have given to us.

I think that's all for now. Don't want to scare you off too soon with my can't-stop-won't-stop updates :)

Love--
Megan


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

www.thirtyonegifts.com click on events and Maddie's Fundraiser