Day 9- Philly and morning of day 10

 I went to write this post last night. Daddy gave me the night off so I came back to the Ronald McDonald house and fell asleep within 30 seconds! So no blog, sorry lol.

Yesterday was pretty much uneventful. She slept better Thursday night. She's been drinking some but refusing to eat. Our Doctor stopped by twice. Said if she went to the bathroom and kept having wet diapers we could go. She slept most of the day. There was some miscommunication between the nursing staff because starting about 5 people kept coming in thinking we should have been gone. So we sat here not really knowing what to do.

About 830 our Doctor came by. This is why he's so amazing. He too was surprised we were still here. He does outpatient visits all day downstairs until 5 on Fridays. We heard things were running late down there so figured we wouldn't see him again but he came up here at 830 after his clinic went that late! He still sat and answered our questions and said he'd figure out what happened with our discharge. He also said he wasn't on call this weekend but I could call him and he would come in if we needed anything. Of course I would never do that unless there was an emergency or something but the fact that he would say/do that is what makes him so much different then our other experiences.

They decided since it was close to 9 by this point we would leave in the morning. So, we're just waiting to get our meds and back to the RMDH we go. Bubba is starting to really miss us and us him and we want to get home so I'm going to work with Delta to see if we can get home a few days earlier then planned! That'll give us a good amount of time to get our routine down before we all go back to work 11/30. Momma got a new job so things will be a bit busy! Seemed like a good time to take that on ;)  Grandma Paradeis is coming to help us that week... Then were already almost 3 weeks into our 7 weeks till cast removal day if JANUARY 11th!!

Have a good weekend everyone!

Day 8 philly

Things are going much better today. Dylann was very agitated last night and ended up pulling out her IVs. She was super itchy and wouldn't take meds. We did manage to sleep from 1-4 or so. This morning they switched her from the Morphine which I was concerned was the problem. She doesn't do well with the narcotic/opiate family and acts really crazy on it. She was hitting us and throwing her meds. Something wasn't normal. Our NP put her on other options and sense then things are calm. She's a little agitated but mostly from being tired and having a hard time finding a good position. Her pain seems controlled though. 

At 10 we got to visit Temple university hospital to get a CT scan to make sure her hips were holding good. Things were happening over there! Plus we got to get out for awhile.

Dylann got fitted for her car seat. There were concerns that she wouldn't be able to sit in it because of how straight her back is in it. If it didn't work she would have had to lay on the back seat on her back and be harnessed to the seat. That didn't make me real thrilled but luckily she fit it and can also take it on the plane!!!

Otherwise she's been sleeping most of the day. She won't eat and isn't drinking a ton. We are trying to avoid getting another IV just to push fluids. Hoping tomorrow she'll be closer to herself.

Dr van Bosse came by at 7 on this way out for the day. He showed us how to diaper her and said her CT scan looked great. He said her hips are very stable and doesn't have to remove it under anesthesia which he often does for AMC kids in case they have unstability they need to work on or potentially recast. So that's good! He did decide just to be safe though she's staying in it for 8 weeks. So we're still way better then the 12 I initially thought but a bit longer then my initial 42 day count down! So we will be coming back mid January to get cast off, get a hip brace, and get her AFOs. Then we will come back a month or so after that to get her tall braces and do some therapy to try to get her walking!!!! :) Then my hope is we won't have to come again for like 9-12 months. Hoping for a good sleep night!

Philly day 7- surgery day

Things went good! Dylann woke up at 4am ready to play for the day which was fine since momma didn't sleep anyways. She was very excited to see daddy!

We got here at 630 for our 730 surgery. We had an issue where our western medicine and alternative treatment worlds collided. The initial plan was for Dylann to have an epidural for two days for pain management. Well Angel has her on some homeopathic stuff for immunity and bone and muscle trauma. Well one of them causes increased platelets so the anesthesiologist was worried she could get a blood clot with the epidural and decided against it. Oops.

They instead placed a small tube with local anesthesia right to the hip. In some ways that might have been better as we dont have to spend 2 days in the PICU.

Surgery took about 5 hours. The doctor said it went really well. He had to shorten her femur bone a bit which happens in 75% of cases but he was hoping not to because of how loose her hips were. This just means now she has a metal plate on her bone so in a year or so she will get it taken out.

We've been with her for a couple hours  now. She's in a fair bit of pain so we're trying to find a good amount. She wants milk but isn't allowed to yet so that's making her mad. She also isn't keeping her o2 stable yet so she's on some air. She's congested from the procedure and won't cough so that's most of the issue I'm sure.

Her legs are pretty wide. I'm told they're pretty stretched but they've seen worse. Tomorrow we meet with PT to look at car seat and stroller options. She also has a CT scan at 10 to make sure all looks well!

We're just snuggling and trying to nap.shes pretty beat.

Philly day #5 and #6

Yesterday we had cast 6 of 6 on her feet!  She did amazing. The doctor said her right foot looked ready but her left needed a little more so they did the last set.

After casts we just came back and napped and played in the playroom. Today we went to the mall to get some steps in. Tonight we had pet therapy and played around the house with a new friend Alayna who came today with her mom and sister. She's 5 but recently had the same surgery so her mom talked with me a lot and helped calm my nerves:).

We are first case tomorrow. Have to get up early and arrive at 630. Daddy's on a flight here now then hopefully we can all get a good nights rest. I'll post tomorrow! Keep her in your thoughts and prayers.

Philly days #3 and #4

Not too much going on over the weekend. Saturday we went to the Please Touch museum as Dylanns birthday present. It was very cute and she seemed to have s good time. Was a little frustrated she couldn't do some of the things she wanted.

There are at least three other AMC families here so I talked with them Saturday night while the kids played. One child had the knee procedure in March Dylann will need when she's 4. This is the one to block the front growth plates so as she grows her knee will straighten on its own. The said it was amazing! Her contracture started at 45 degrees (same as Dylanns) and in 6 months it has gone to 15!. She gets the blockers out in a few months her parent says. This just reinforced why I'm here..no one in Minnesota talked about knee plans. I was having some fleeting second thoughts earlier in the day. It's just so exhausting traveling with kids and keeping them entertained. We've been antsy and restless. Dylann and I both like to be on the go and getting stuff done so sitting around all day at the RMDH has been a little harder for me. So I found myself wondering if we should have done this in Minnesota.... Then I saw this girls progress here. They come from Chicago...I stopped my second thoughts. I'm going to use this time prior to her surgery to relax while here which isn't something we get very often.

Dylann slept really poor that night... Up every hour and agitated. It was similar to how she was during our last trip after the first cast. It was a day after casting though so not sure what was going on. She did feel a little warm so hopefully she isn't coming down with anything. I'm sure our neighbors loved us!

Yesterday we were tired so we played in the room and in the play area all day. Took a nap most of the afternoon..just relaxed :).

Dylann slept all night last night so we seem back on track. Off to casting at 10. Have a great day!

Philly day #2

I cannot even begin to tell you the love and gratitude that I have for today! My heart is full!!  It was an amazing Day!!

We started off going to our 10am casting appointment. When we got there I got to meet the infamous Bash and his momma! When I was pregnant with Dylann I saw two articles in the Internet about boys with AMC who had amazing results from craniosacral therapy; one was bash. They live in FL and there are lots of articles and blogs about him and their work at the Upledger Institute. I recognized him immediately. He's 5 now. We spent a half hour or so playing with him. It was great!

Then we got called for our appointment within an hour of our time! That's crazy. We are used to waiting 2-4 hours past our scheduled appointment so we plan to have lunch and play with the toys. Today we were in and out in 2 hours!

During her casting she didn't even cry. She cried when we pulled into the parking lot and said bye bye!! After they took the casts off with some tears she just laid there and watched Mickey. It was so much easier than usual! 

I asked more hip questions.  The surgery will take about 4 hours on Wednesday.  He will also do another heel cord release but said her feet look good! He is also going to fit her for her KAFOs while in the operating room so they can make the braces before we come back. But, the best news of all... He thinks she will only need 6 weeks in the SPICA CAST! When we come back at 6 weeks he said he plans to put her in a brace and not recast . There is a chance this could change but he said that's uncommon. It's the best news I have heard in a long time! 6 weeks sounds so much more manageable then 12. My entire body relaxed!

After we left our great appointment we got a call telling us we got into the Ronald McDonald house 1 mile from Shriners!!  We quick ran and packed up our stuff at the hotel, went and got a few groceries, then made our way there. This place is amazing! Our room is twice the size of the one we stayed in last night. Dylann loves it! There's a huge play area that we spent much of the afternoon in. Then at 6 we went down for dinner and they had set up a birthday party for Dylann! A princess table, hats, a birthday cake, and a present. Everyone sung to her! We met these people 2 hours before and they pulled together a birthday party for dinner. My heart is full! Absolutely amazing day.

Philly day #1

We made it. We're at the hotel winding down with an episode of Paw Patrol then off to bed.

Travel was pretty good. Dylann did pretty good on the plane. She was a little antsy but had her own seat this time so that helped although she wanted to stand in it versus sit in it. Thanks Nichole for bringing us tithe airport!

I ended up getting in to the RMDH that I wanted but when I told her my flight landed at 6 she said I couldn't have it at the risk of not getting there by 745. So that was really sad. I hope I get in tomorrow.

Tomorrow is Miss Dylanns second birthday! Hoping to do something fun if her appointment is fast. Tomorrow is cast 5 of 6 on her feet then 6 is on Monday. Hip surgery is Wednesday! Keep her in your thoughts!