Casts

One year ago today we were at gilettes and our then orthopedist said "no more casts for you." (Enter soup guy from Seinfeld.). That was after her 3rd cast and not a happy Christmas momma.

Today we leave Shriners with our new orthopedist saying "Part 1 corrected, her feet are straight. Part 2 is getting her heel cords lengthened so her feet will be flat to the ground" !!!!!!  It's scheduled for 1/12. Yipeeee!  Band surgery will move back a bit. She will be in hard casts for 3 weeks after the jan appt.

Here were her feet in August

Here they are today

Updates - Children's and beyond

I won't ever say that we are appointment free for a week again! So, as I mentioned in the last post, Dylann had a very eventful Thanksgiving weekend. She was having a hard time staying awake, labored breathing, and very pale Friday morning. After two ambulance rides and two ER visits, we ended up being admitted to Childrens for 4 days for hypoglycemia. There were many tests and procedures done to try to determine the cause since this had not ever been an issue for her prior to last weekend. Ultimately she ended up having a gastroviral infection that was impacting her pancreas and along with that and her desire to avoid eating at any cost, was causing the blood sugars to drop. She got home Monday afternoon and we have been tracking her sugars at home. They continue to improve and we have been following up with the endocrinologist with the numbers to see if she wants to do any further testing for possible metabolic conditions that could have done it. So far she doesnt have concerns of this. We talk with her again tomorrow. So this week was a bit busy. Dylann had a few follow up appointments with primary care and endocrinology just to ensure she stayed on track. We had Craniosacral therapy this week which was good timing since they had to take her casts off in the hosital and allowed for some work on both her ankles and her systems to help continuing to heal. We had a few appointments at Shriners. First was with the plastic surgeon. Our new orthopedist referred us to him for her amniotic band marks on her right calf. I hadnt thought anything about them to be honest and just assumed that she would have a misshape to her calves for her entire life. Well, the MD stated that he can fix the marks! He said that they usually do treat them becuase as the kids get older, the band mark starts to push more and more on the arteries and veins in the area and can cause issues. He also discussed that most kids when they are older do prefer to have a scar on their extremities versus having the different shape to them. So, Dylann will be having minor skin surgery in Jan or Feb and Dr Skow is confident that after about a year, the shape will be normal!! That was exciting and unexpected news. Then we saw an orthopedist who was filling in. He said that Dylann's feet are still at about a 2 of 6 levels so she is going a little slower. She did however have her casts off for a week so that did result in some regression. He was able to still make some movements with them and said they will continue until they cant get movement any longer. He did feel that she would need to be in casts much longer than typical but that is common for arthrogryposis clubfeet. She then was recasted and the caster was able to get some movements. She handled this better then the first 3 casts so hopefully it is starting to hurt less! She is back to being my sweet little girl all week! We missed her this weekend!

Our visit to children's

I guess I shouldn't have said that she didn't have appointments this week. Dylann's been down at children's hospital since yesterday morning.

We started yesterday taking an ambulance to MG Hospital cause she was pale, going in and out of awareness, and lots of trouble breathing. We were at my moms. Now we've been at MPLS children's since 11am after being transferred. All we really know is her blood sugars were very low and she was slightly dehydrated. She's doing much better after 24 hours of IV.  Has a little temp and doesn't want to eat as much as normal but is close to her baseline behaviorally. 

They think it was a perfect storm of having a bug for awhile that caused her not to eat, then depleted all her glucose reserves and got dehydrated. But she's still having a hard time maintaining her blood sugars where they are comfortable. Sounds like we will be here another night for sure. 

Been a long two days for poor Dylann!

Busy week but wonderful week

Casting Update

So not so much of a birthday present for Dylann cause she HATES getting her casts changed.. but it was for momma and daddy. Jeremy took the day off to spend with Dylann for her birthday originally since I had to work and we have been doing this each year with Micah so wanted to keep up tradition. Well, it so fell that she needed a cast change today so he took her to that this morning. 

 Today was the 3rd change, so she has been in casts for 2 weeks. A typical ponseti series for treating clubfeet takes around 6-8 weeks with a heel cord release towards the end. When kids have clubfeet their achilles gets very tight and shortened for being in that position for so long. SO when the feet are in a good position, they lengthen the achilles and prop them up to be flat to the ground. The weeks alternate between just getting casts with the cast tech, who is lovely by the way at Shriners, to meeting with the MD and the caster on the alternate weeks to make sure "the MD still approves the plan."

 So, there is always a fair bit of anxiety going into the meeting with the MD in case they tell us they wont do this any longer. That is what happended at Gillette's when Dylann was 2 months old and at this exact same check up.. he said no more, it wont work anyways so we arent going to waste money and time.  

To prep Jeremy for this, I asked, what if the MD says no more what are you going to say. Jeremy said "Um yeah my wife isnt going to like that so lets do the 6-8 weeks before we make that decision." LOL - good hubby. 

 Well the great news is that he in no way had to even broach that conversation because both the MD and the caster said she is making great progress! Her right foot is ALREADY at the point where they can do the heel cord release and prop it up flat to the ground and that the left foot needs just a little more time. They both said she will get there with a few more casts then the 6-8 weeks and that they are confident at this point that the casting will work!!!! Maybe miss Dylann will even be able to stand by Christmas!! :) 

 There is still alot of other things we will need to do as her thigh and calf muscles are very weak so it will take time to strengthen those once she can stand on her feet. The MD also wants her to see a plastic surgeon to see if there are things they can do to help with her amniotic banding mark on her right leg that has cut into her muscle a fair bit. That appointment is set for 12/4. She also still has one hip out that will need surgery next summer.. we will most likely still use the Philly MD for this since he has done several of these on AMC kids. Although despite lots of caution from other local moms with kids with AMC to see this MPLS Shriners MD, he is kinda growing on me and I am starting to trust him! 

My advice to any parents who feel in their gut that what is being recommended is not exactly right should get a second opinion. I just knew that Dylann did not need to have her ankle bones removed to get the ability to stand flat footed and I was determined to find a MD that would listen to me and at least try a full ponsetti intervention. And, to be honest, if things make a different turn in an upcoming appointment, we are still going to Philly then to have that MD cast. His success rate is literally 100% and has not had to do a surgery in several years on an AMC patient's ankles. I wouldnt mind not having to move to Philly temporaroly next year though given how frequently they need to cast! 

 making progress!! :) happy birthday miss Dylann!!

More tests.

Dylann had a long neurological appointment last week. He is pleased with her progress overall and she's doing everything she should cognitively. He seemed puzzled about what caused her AMC. He ultimately decided that he wants to do a MRI of her brain and spine. He expects her brain will look fine but he's wondering if she had something congenital happen to her spine/lower back that caused some nerve problems to her lower legs. 

The thing that's not so fun about this is she needs to be sedated for three hours to do the procedure. It's scheduled for 11/18. Not looking too forward to that.

He wanted the results available prior to her genetic appt scheduled for 11/20. That way if it's normal she will probably do another test as he's thinking the only thing left would be something genetic that hasn't been found yet. They would probably do a full genetic mapping on her that can pretty much tell you anything about what she currently has and what she's genetically wired to have in the future. We had a long talk about this as I don't want to know some things. I'm too much of a worrier to know possible things she could get when she's older. So we have to make some decisions of what we want disclosed and what we don't. Amazing what they can do nowadays. I'm just not sure what it would change as far as our interventions at this point.

Otherwise we are just starting to plan her first birthday next month!

Good news... What?

We finally have great news lately!!  Dylann started feeding therapy and has improved her eating dramatically! Her OT even told me her pincher grasp and what she observed in her development from fine motor standpoint are like a 15 month old. What??? We never hear that lol!

She has PT 1 to times a week now which is much more than we were doing. They think she's going to crawl soon!! Albiet a modified crawl, but it's a crawl!!

Now today we just saw her ENT who told me she can now hear out of both ears AND that he does not think she has a small chin which her neurologist put in my head last month. 

I love good news appointments! For those of you who came to Dylann's dash that was a Huge success and I thank all of you. 

Now we are dropping the kids off at my cousins for the weekend and having an anniversary staycation!