Almost halfway through the spica cast

Today's the three week mark since surgery and cast day. We've sort of settled into a new routine. We don't leave the house much which I think is okay. She's pretty close to eating normally. We were spoiled last week with grandma Paradeis staying with us but have started back to our routine for the next few months. A friend from church started Monday as her PCA while she's in the cast. Dylann loves her and it's been going great! I will be working from home while she's here for now and be in the office 2-3 days a week probably through January. It's a fair bit of juggling but when I think we're almost halfway done, it doesn't seem like that's even possible. Time has gone by fairly fast.

The areas that could use some improvement are her sleep and keeping her cast dry.  Some nights she will sleep 11 straight hours. Others she will only sleep 3-4 total.  Most of the time she's up 2-3 times a night for about 20 minutes.  In some ways it feels like a newborn again.  The diapering is a nightmare. We've adjusted our approach at least 10 times and still can't keep it dry for an entire day. We've more just changed our expectations and added time to blow dry her each night.

We leave 1/9 to go back to philly and return 1/12. Cast removal is 1/11. She will get an X-ray this Friday to make sure it continues to look good. After cast comes off she will go into a brace for another month keeping her in a similar position. Then we go back in February hopefully for the final foot braces and clearance to start weight bearing.

As usual, her mood is great and she's as cute as can be!

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!

Preparing

Reality has started to set in. I booked our flights back to Philly. We leave in three weeks then four weeks from tomorrow she has her hip surgery. Return flight is set for the Wed before Thanksgiving so really hoping something doesn't delay that.

The last few days have been sort of up and down. Sunday afternoon I took the kids grocery shopping. Dylann is starting to have more toddler moments and this day was no exception. She was screaming and throwing a tantrum for most of the 20 minute visit. Usually that wouldn't bug me too much but for some reason it feels like people look at me different then with Micah. I get lots of stares when she's casted. It quite possibly is all in my head but i worry people are judging me like I contributed to why she's casted. Here I'm holding a screaming child and she has huge casts on her. So, it stressed me out. I'd prefer people just to ask me. Two individuals in Philly asked and it was much better. 

That visit to the grocery store just brought to light a lot of realities of how hard the minor day to day things will be in a month. She won't be able to sit in a cart at the store. She's hard to carry and multitask with the weight of casts today so can't imagine the upgrade. Can we even travel much for holidays? I started to really worry Sunday night as I ran through scenerios and didn't sleep much. Then the realty of flying this poor girl in a full body cast. It was just too much.

Monday I called our care coordinator and contacted a few people in the FB support groups who've been through it. That helped. I got three main messages/themes... It will be hard with some days almost impossible AND the anticipation of it is much worse then going through it AND she will remember none of it.

So, I calmed and just booked the tickets :). One step closer. She continues to amaze me each day with her resiliency. She's so happy the last few days and sleeping good. She even figured out how to climb the stairs. She tried hard a few times to stand today which frustrated her a bit. Each day we are a little closer to her standing. :). She's got this! We got this!

First Philly Trip

So we're almost wrapping up our first trip to Philadelphia.  We got in late Thursday evening after a plane delay. Flight went well but then everyone was tired so getting to the car and the hotel had most people in tears. 

Friday we went to our appt at 1130 and ended up being seen about 230. Sounds like that's kinda normal so we had lunch and played in the big play room.

Dylann pretty much hated every minute of the casting but that's been all the previous ones too. Dr Vanbosse used the hard casts instead of the soft ones were used to so she weighs like 10 pounds more now lol. After casts we just walked around downtown Philly for awhile and visited Reading market and LOVE park. Then we got caught in a rainstorm so headed home. 

Yesterday we drive out to see our friends the Prices and their new house. I'm partial to the one that was across the street from us but it was nice ;). We then went with them to Hershey chocolate world! It was a cute town and fun thing to do! Kids loved the ride that taught us how the make chocolate then grandma bought then a bear and some chocolate.

Today we went to Diggerland USA so Micah could drive a backhoe. He was pretty pumped. Now Micah and grandma are swimming at the hotel while dyl and I relax before another appt tomorrow.

Dylann's having a harder time with her casts then usual.  She hasn't slept more then 2-3 hours straight without waking up crying. She's pretty upset. Grandma has done a lot of the night duty so we could keep Micah asleep as much as possible. I'm sure our hotel neighbors haven't gotten much sleep either.   It's really hard to see your kid in pain and not be able to do anything about it... And there's not really an end in sight. She will be in 5 more casts until her surgery then her spica. I talked to the doctor a lot about the hip plans. He said his outcomes are much higher then what I was told in Minnesota .. Good news. He told me cause he's trying to correct her feet and knees a bit too she will need the full body spica instead of the 1.5 I was hoping for. She will look like the picture below for 12 weeks starting 11/18 but likely in more of a frog pose with bent knees... Bad news.

Sigh. After seeing her cry most of the last 3 days it makes you stop and think if it's really all worth it. I was thinking last night that we are 2 days into 124 days in casts.  I feel like we need to do what we can to give her the best chance at walking and getting her joints in the right position... But I hope that's the right decision. Maybe the pain trade off isn't worth it. I'm not sure if she will sleep fully normal again until February. She cried so hard today cause she couldn't go swimming with Micah. Just breaks your heart. 

Cast change tomorrow then maybe a little more sightseeing and home on Tuesday. Have a good week everyone!

October updates

Just starting to get packed for our first Philly trip! We leave Thursday after work. Micah and grandma are coming along to keep Dyl and I company. Dylann will be put back into her ponsetti casts Friday. Dr Vanbosse wants to redo her feet since they've regressed a little bit. Over the weekend we are going to visit our friends the Prices!! We are also going to Diggerland which Im told is a fun place where Micah can drive a backhoe and other construction equipment. Then Monday back to Shriners to get another cast on her feet and home Tuesday.

I've been feeling a little down the last few days and today I think I finally put my finger on it. I'm nervous. I know that starting Friday Dylann will be in casts for 4 straight months. I'm sad. After all this progress she's made starting Friday she won't be able to stand or practice her walking for a long time. I know it's all worth it but it is still hard to see your toddler restrained and frustrated and in pain. So.. That's what I know. Wish us luck!

My awesome cousins did help me recreate this awesome photo I saw that makes me think of Dylann!

Good evening!

Hi ya from the Paradeis household!

Just a few updates. We leave for Philly in two weeks so getting things ready for that. From that point on she will be in casts for 4 months straight so were getting our swims and play time in where we can!

I got good news last week that my FMLA was supported. Fourth time was the charm! I plan to be in the office two days a week and then working from home a little the other three days. I just met with an awesome gal from church who is hopefully going to help me 10-12 hours a week during those three days so I can have focused work time set aside!! Dylann loved her!

All in all a pretty good week!

Preparing for Philly

Happy Monday!

Things have been somewhat quiet at the Paradeis household the last few weeks. Dylann's Dash went so awesome! Thanks again to everyone who helped, contributed, and participated! It was an amazingly heart warming day! I can't wait to watch this grow year to year!

Our trip to Philly is coming soon. We will be gone Thursday 10/8 to Tuesday 10/13 for her first visit. This is for her casting redo on her feet. Micah and grandma will be tagging along too. He wants to see his bestie Alayna and I know he's starting to Feel a little left out of things.

The only issue were running into is me trying to get FMLA. I've gone around and around with our vendor and get nowhere. They've only approved my time in Philly but don't seem to feel the same concern for her recovery time in the cast when she can't be at daycare. We will make  one last attempt when I go out on October and can get a MD letter and 4th version of the form. Otherwise it looks like I'll be in the market for hiring my own PCA or in the market for a new job.  I'm working on locating potential candidates.

So knowing this might happen I spent the better part of last week trying to get medical assistance for Dylann to get PCA. Well apparently they are not too interested in giving us that with our income unless I pay a hefty parental fee for MA tefra. To even be considered for that she has to be certified disabled by Hennepin county's SMRT process. That's unlikely. The Hennepin county SW I talked too did tell me that I sounded somewhat intelligent so I could probably figure out the 30 page application and really anyone who was somewhat "intelligible" could do it.  That brightened my day. :). I'll private pay :).   So, if anyone knows a PCA looking for a new job, send them my way!

Going back to Philly....

Things have been busy this week! Dylann has been so excited to practice her walking behind her walking toys with our help. SHe is so motivated the last few weeks! We got great news that the Tim Orth Foundation is going to help cover our costs to travel to Philly this Fall which is so awersome! That takes one major weight off our shoulders! Its amazing. We got the call today.. dates are set. We go to Philly October 9th to the 13th to do a few casts. Then we go back November 12th to November 23rd to get a few more casts and her hip surgery on November 18th. So Miss Dylann will spend her second birthday in Philadelphia getting casted :). Poor Dylann. Ill try to take her somewhere fun that night. When I got that call, it was a mix of feeling calm that I now have a plan but then anxious because now it is more real. I filed my FMLA claim so I can be gone from work on and off those three months. Its going to be busy and hard but I feel much better knowing that this MD is the one who is going to do her surgery. Now, just to tell our MD here that... We have spent this whole week outside of work getting Micah ready for Kindergarten and finalizing all the Dylanns Dash stuff. Hope to see everyone there!

PHILLLLLLY!!!!!!!!!!!!!

So, we made it. Almost missed the flight due to horrible 4th of July weekend traffic coming from up north, a bag that was 7 pounds too heavy, and confiscated juice for the baby.. but we made it. 

 Saw Dr Van Bosse this morning after our 11 month wait!!! It went well, much like all the other appointments we have had meeting with a new orthopedic MD and they do a full exam then tell us the recommendations. Although, today even hearing stuff all over again, it felt much different since I knew I was talking to someone who I trusted to treat things. I will say, the list was longer then I expected. 

 For her feet - he said she did have some good degree of movement, however he doesnt feel they are perfectly aligned. He recommends another 6 or so casts and possibly another heel cord release. We talked alot about if we should do a cast today then another one friday before going home but he really wanted to be able to have time to make her some new braces and I cant stay into next week. So, we utimately decided not to cast today. 

 For her hips - her left one needs to be re-located which isnt new news. He likes to do them as close to 18 months as possible, dylann is 19. He talked to his nurse while I was there and discussed his surgical schedule flexibility. When I made this appt 11 months ago, his surgical wait was 2 years so I assumed the earliest she would be able to see him for her hip would be next spring. He said they are working to get her in for October! He also said her right hip, while not dislocated, is tight. He would like to do a tendon release around the same time as the hip surgery to gain some more motion. 

 For her knees- he said that he doesnt do surgery until kids are 4 on knees. He would like to make her taller braces after her feet are realigned that help stabalize her knees in the mean time. The surgery would be to release the tendon on her left and then on her right, he would add some plates that would impact the growth plates so that as she grows, the knee will naturally align and then they remove the plates when the knee has gained some straightening. Amazing. 

 We spent alot of time talking about how this works for out of state folks as I know many of his clients travel very far to see him. Recently I heard Peru. He said once the surgery date is picked, he can do 2 casts during a 5 day stay, then maybe two more in MPLS with my current MD, then do 2 more while we are out there for her hip surgery. That would be a 1.5-2 week visit then. He said she could go home after her IP hospitalization until her 6 week follow up where she would come back to get her body cast changed.

 Dylann also saw the upper extremity specialist just to make sure they didnt have any recommendations. They didnt at this point. She still has mild affect to her fingers and wrists but that effect is still better then what they can usually correct for anyways. she suspects the little issues Dylann does have will just continue to get better as she uses them and strethes them. 

 Dylann was a trooper but by the end when someone new walked in, would just yell "bye bye". :) She feel asleep waiting for our cab ride back and didnt wake up while I transferred her into the cab, out of the cab, and into her crib then to wake up soon after pretty exhausted. spent much of the night laying on me until she asked to take a bath. Finally just now got her down for the night. 

 So obviously Jeremy and I have alot to talk about to see how we can make this work. I initially thought I would be considering one or two visits for her hip next year.. now its a discussion of probably 3-5 visits between September and November of this year. I really want him to do it. I know he is the best. I know we will find a way. 

 Dylann and I will be coming back Thursday so just plan to do girls trip for a few days. Having dinner with a coworker tomorrow who works in the Philly office. Got to see Cari and her sweet Jamis today as they were in the clinic too. Some of you met her at Dylanns dash last year. They live up by Morris and her AMCer is a little younger than Dylann and also sees Dr V. Making a little AMC family!  

Ok, time for sleep!

June updates

BE WARNED-- THERE ARE POST SURGERY PICTURES.

Happy almost summer everyone!

Dylann finally had her band surgery two weeks ago. It was pretty easy compared to prior ones. She was back to herself within a few hours. Other than her utter disappointment she couldn't swim with Micah Saturday, it's as if it didn't happen. 

 We got to see the results today and they look amazing!!

Before - you can see the crease mid calf.

After- no more crease! Amazing!

The MD was very happy and said she could swim 4th of July weekend.

Today we also got the wonderful news that Governer Mark Dayton supported the proclamation for June 30th AMC awareness day!! So exciting. 

Two weeks were off to Philly and the dash in August! Then hopefully Dylann's final surgery in September. Lots to look forward to. 

Surgery Updates

The blog post views have significantly went down in the last few months so maybe people arent as interested in getting updates through this venue anymore. I kinda find it cathartic so I am probably going to keep doing it anyways even if no one is reading it LOL! 

 Dylann had a big week. First, we scheduled her hip surgery for Monday September 14th. This may change after we see the Philly specialist but wanted to get it on the calendar. We are still trying to exactly work through how the fall/winter will look with her being in a body cast for 12 weeks. It would be much easier to do it here for that reason but if it feels like doing it in Philly is better, than that is what we will do. So, we are planning for the potential that one of us may not be working for a bit. So, many of you may already know this, but we put our house up on the market a month or so ago. This is our first step to try to work one of us out of working for a while until we can ensure Dylann has what she needs and for many other reasons. We have other plans if that does not pan out. We do not want to move micah mid kindergarden year so not much time is left for a sale to come through leaving enough of a window to allow for the move time. Debbie, if you are reading this, it is probably ok to advertise our house on Facebook now :) The cat is out of the bag and was one of the things I was referencing in my posts last month where the Paradeis family is working to make good changes for our lives. 

 So, enough about me :) Scheduling that surgery was hard. The nurse told me it had "to be a day that had a respiratory therapist would be available due to it being potentially a day long surgery". That made it hard to concetrate the remainder of the day. I know it is the next needed step but is very scary to thinking of your child going through that. I guess we kinda have a trial run next Thursday which will be our 3rd attempt at her amniotic band surgery which will be about 2-3 hours.

 She had 3 appointments today so daddy was busy. First she had her surgical pre-op then PT at Gillette's. While I am not a super fan of the orthopedic department at Gilettes, their PT/OT dept is top notch!! Dylann came home with a gait trainer today. While she pretty much hates it, she did manage to go backwards a few times between cries!!

Then this afternoon we went back in for our re-weigh to ensure there are not concerns for not growing. Well, as momma argued last time, it is situational when she is stalling growth (hospital stays, sickness, etc.) She grew an inch and gained a pound in the last 3 weeks! she is 4%height and 5%weight now which is the highest she has ever been! I would say, all in all, we had a good day today :)

May updates

Hi everyone,

Things have been a little busy this month so thought I'd write an update.

Dylann was supposed to have surgery May 7th. This was the one where they were going to do some plastic surgery on her amniotic banding on her calf. It was our second attempt. On our way down there, she threw up. Ugg. We called and they said to still come and they'd assess when we got there. By the time we got down there she was pale and yellow and lethargic so they canceled it. About two hours later when we got home and she ate, she was back to normal. Lol, oh miss Dylann. She's a smart one. 

Over that weekend she seemed fine then Sunday and Monday she started not eating and waking and screaming at night. I brought her in Tuesday just to make sure she didn't have an ear infection or something. They concluded teething! LOL. Another strong parenting moment. They did however start to talk about weight concerns again. Apparently she lost a little weight since the month prior. There was again talk of failure to thrive and want us back in a week or two to decide if they'll do the full battery of tests. The girl is 2% height and has 9 month old size feet, I'm not sure how heavy they expect her to get. Well see. She's been eating well and sleeping again. 

Got a call today and the third attempt at surgery is set for June 4th. Fingers crossed.

Otherwise we've been planning our Philly trip and the second annual Dylann's dash. Dylann and I will be leaving to see dr Vanbosse in Philly Sunday July 5th and will stay there till Thursday or so. After that appt we will decide on hip surgery plans. I also want a plan for her right knee.

The 2nd annual Dylann's dash registration has officially opened!! Save the date or better yet, SIGN UP.. August 29th in eden prairie. Www.dylanndash.com

April Updates

Its been a busy few weeks. First, Dylann's surgery that was scheduled for 4/2 was cancelled due to her being too congested. This was the one where they were going to correct her amniotic band markings on her right calf. Mommy was ok with this. It has been rescheduled for 5/7 as long as she stays healthy. 

 We had her wonderful event 3/28 with the Tim Orth Foundation and 12 other wonderful families who got some financial assistance towards the medical expenses. It was such an honor to be a part of that event and it was a great evening! Thanks to all of you who came out that day and supported us!!

We went back to check her weight last week due to her not gaining anything in the last 4 months and we were questioning celiac. Guess what?? SHE GAINED 1.5 POUNDS!! We finally have an eater on our hands. So, our MD has no concerns about her growth at this time.

She has been working hard in therapy to try to start doing some weightbaring. She uses a stander during sessions and will be getting one to take home soon. In a few months, they will be working to get a gait trainer from our insurance but want to be sure we get the best one for Dylann. She definately seems to want to stand up. She will also be starting pool therapy after she heals from her May surgery.

We still are planning to go to Philadelphia 7/5 to see the expert. I am not sure if we will continue treatment out there or not at this time. I really want him to see her and let us know what his treatment plan would be for her knees and hip then we will go from there. Other than that, we have just been doing alot of talking and praying about what to do regarding her hip. No matter what doctor we see there are risks. No matter which one we see, the preferred time frame is to do this major surgery between May and November. No matter what doctor we see Dylann will need to be in a full body cast (arm pits to toes) for at least 12 weeks. This will take alot of changes for our family. She will not be able to go to daycare and if one of us takes FMLA to be home with her, we wont be able to pay for her spot to hold it. So, we dont know where our lives will be in the next 3-6 months. More to come!

We're buying shoes!!! :)

Braces are in!!

Dylann got her casts off today. Her feet got stretched back to a neutral position and looked great. She was not a super fan of the nurses today though. They'd look at her and she start crying.

She then had her physical for her surgery in two weeks. She will be having her band markings on her calf fixed on the skin. It should be day surgery.

Then we went and got her new braces!! No more boots and bar. These things are so amazing that she can wear shoes over them! I get to buy my daughter shoes.. for the first time ever! I can't even tell you how excited that makes me. 

Dylann also got weighed and measured today and gained over a half pound and an inch in a month! This is also huge in our world lol.

That's all for now. We are driving to Hutchinson for a recipient dinner for the jam the gym event the 28th where Dylann is one of the kids receiving money towards medical expenses. If anyone's around next Saturday night, come on out to glencoe!

More casts...

Dylann went to Shriners yesterday. They made her homemade AFOs for the day and night that will help her weight bearing but also keep her ankles rotated at night. They didn't like her tightness from being out of the bar so she's back in casts for two weeks. She was not pleased apparently with that turn of events.  She also gets a little walker her PT wanted for us to work on strengthening her legs.  She says ...HELLO..

March updates

The first week Dylann had her boots and bar she cried and screamed all night. Since her left hip is dislocated it was very uncomfortable for her to externally rotate her leg and it was pushing her leg our versus turning it. So we took the bar off and just left the boots on to keep the heel cord length. 

I emailed our Philly doctor and he sent me some pictures of other options for new braces and copied our local doctor. So she's getting those bar-less ones on Thursday. Hopping this will help with some weight bearing in therapy as they're higher on her leg.

April will also be Dylann's third surgery. Her plastic surgeon wants to go correct her deep amniotic band marking on her calf so it doesn't cause regression on her clubfeet or start to restrict blood vessels. While this one should hurt less she will be under anesthesia three times as long.

Lastly we just had Dylann's 15 month visit last week. She's made it back on the  growth chart for height!!! Yahoo. She however didn't gain a thing in 4 months causing her to fall off the charts from 20% at the last visit. While it could certainly be a result of a crappy three months for her with two hospitalizations, a surgery, and a few viruses, were testing her for celiac based on a few symptoms she's had in addition to the growth slowing. We should no more next month. 

March will be busy with Micah and I going to Canada Thursday for 5 days and then Micah turning 5 :( and Dylann's event 3/28 where she is a recipient of a grant from the Tim orth foundation to help cover some of her medical costs. 

Have a great month!

Feet

Having a baby with special needs has helped me become a better person in many ways. It still doesnt mean it's not hard. The rest of the world is still moving at the same pace it was. I still have a full time job that takes about 50-60 hours of my time a week, never ending bills to pay,trying to start up a charity, a son who needs just as much time with his mommy as his sister, a family, a daughter who has sometimes 8 appointments in a week, and most recently trying to finally put my own needs in line with all this the last few months and get back to 3 dimensional health - physical/emotional, spiritual, and soul. Some days feel nearly impossible.. today was no exception. 

 Dylann got her casts off last week Thursday after her heel cord release. They look great. 

Before

After

We had an entire day of appointments Thursday with the last one including getting into her orthotics. She will have to wear the boots with the bar for 3 months full time to ensure that her feet dont relapse back to the club position. Well, during that conversation they tell me they dont have the orthotic on hand and had to order it. Certainly being a project manager my initial reaction is to say, why the hell didnt you order that three weeks ago as part of the discharge plan. Well, being that these are the only MDs who have helped me so far I kept it to myself and politely asked what they plan to do in the mean time so she doesnt regress. I watched the tech make a make-shift brace out of cast material and wrap it around her ankles and no one seemed concerned. 

 So, I watched this weekend as my baby's feet slowly started moving back to the old position and there was nothing I could do about it. I was told that the orthotic would be in Tuesday. I spent my early morning fighting traffic in the snow to try to get down there so I can get back this taken care of before work (worrying each time that at some point my work may not be so flexible with me and then what will I do). I get down there to hear that again, they have no orthotic. "The Fed Ex man hasnt arrived." Again, several thoughts went through my head, why are they not here if you ordered them last week Thursday and did one day air as you said you would, and why didn't anyone call me before I hauled my children out of bed a 530am to get this done and tell me to come at a later time or date. Instead, today, all I could do was cry. I dont understand why my providers cannot figure this stuff out. Arent I paying them to figure this stuff out? I can run the entire list of stuff above but I need them to figure this stuff out. I heard a whole lot of " well how far are you away?" and on and on. I just cried. I dont need solutions if there werent constant problems with every provider we see for her. 

 Anyways, I told them I wouldnt miss anymore stuff for things that could be controlled and that I wanted someone to look at her feet right now to make sure they were even going to fit into the shoes with the regression. They went to plan B to put her in other braces and just then the boots arrived. I got to watch my daughter scream in pain for 30 minutes while they restretched her feet back into the 90 degree angle they were last week and then listen to that same screaming the entire way back. All the while thinking, not one of these things would have happened if the braces were ordered at discharge. 

 Yes, today was a hard day. In the scheme of things, we have had a lot worse but it was still a hard day. What never stops amazing me, however, is how strong and resilient my beautiful baby is.

Heel cord surgery

Dylann had her heel lengthening surgery this morning. She was a trooper during the procedure and everything went great. Her orthopedist said her feet got to exactly where they want them and she'll be ready to go into braces when these casts come off in 3 weeks!! He actually said he thinks her aftercare will be more like typical clubfeet then severe arthrgryposis clubfeet based on how they came along!!! Yeah. That means possible shorter duration of braces. 

So the pain hasn't been great so far though. Dylann never cries and she's been crying for about 2 hours straight. So they did some pain meds and now she's been quiet for about 5 minutes and hopefully will take a much needed nap since she decided to wake up at 4 this morning. She apparently was very excited for the day. Hopefully after a good nap our old Dylann will be back :). The end of her first treatment episode is hopefully near completion!!