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!

Ear Tubes and Philly Updates

Dylann had her ear tube surgery Friday and it went well. All the fluid is out and she should be hearing great now. All the nurses loved her and called her their angel. She barely even cried coming out of the anesthesia. They talked some about her heart and that it is normal at her age. They didn't seem concerned at all but still wouldn't do an ECG or echo. We will be talking to her pediatrician about it more I guess. I also talked via email to the Philly MD yesterday and today so there are some plans in place. Dylann will be starting casting at the Shriners in Mpls 10/30 and he will work with the MD here as needed. Dr VB from Philly actually wants to do her hip surgery right away next summer as he likes to do it when they are 12-18 months. So Dylann has a big summer ahead of her next year in Phildelphia doing hip surgery and hopefully enough casting to have her feet in the correct positions. Maybe the MD here can do most of the feet work too. His nurse was very nice and said they will do all they can to co-manage with Dr VB so that we can hopefully minimize the travel as much as possible.

Updates

There have been a few updates over the last few weeks but just finally getting time to post. 

I heard a few weeks ago that our appointment in Philadelphia is 8/31/15. It could be a bit earlier but we won't know until early 2015 when the schedules come out for the doctors. I did email the new doctor this week to see what he thinks we should do in the meantime. He's traveling and will get back to me next week. I asked if he could coordinate with our Shriners to have her casted and maybe a heel cord release. More to come.

At her 9 month appointment, our doctor said we shouldn't wait any longer on her ears so her speech doesn't get impacted. We saw the ENT and have been trying to get that scheduled a few times now but she's been sick. Two weeks ago she had her first fever and it was rough on her and lasted three days. She seemed better last week so we had it planned for last Friday. She came home sick Thursday from daycare and her and Micah were up all night throwing up so we had to cancel it. So, it is scheduled again for this Friday. 

So this week we went to our second pre op appointment in 2 weeks. Her pediatrician actually heard a heart murmur today for the first time. So that was surprising. I'm not sure what it means. She said it was nothing because of the number of times Dylann's heart was looked at when I was pregnant and that it hasn't come up til now. Well I'm a worrier so I didn't love that answer. She did sign off for her surgery Friday. I left there feeling like.. Really, really.  This poor girl can't catch a break. I realize most people with murmurs are fine but it's another thing for her to work through. So, I told the hospital I wasn't doing anesthesia until they do an EKG Friday morning. So I guess we will know more then. 

Dylann also saw the neurologist again this week. He continues to be happy with her cognitive development. Yeah some good news!  He is somewhat concerned about her jaw. This hasn't been brought up to me since I was pregnant. He said that due to her chin being slightly in, that she could have trouble swallowing or breathing at night. Neither of which have been an issue so not sure the reason he brought it up. Just wanted to worry me I suppose. Why not? He said some doctors may want to move hers out. I actually think it looks pretty normal. Who knows. I think he felt bad after I told him if my struggles with the first orthopedist so he asked if he could help with something. I said I want more help orthopedically and I want her to eat. So, he did order more PT and OT through the clinic so this is in addition to what she's getting through the school district. He ordered an assessment for her eating since she really hates eating food and being 10 months now and not gaining much weight lately, it's probably time to work harder on it. 

So it's been quiet. Just doing dash stuff!

ENT visit

Never a dull moment for Dylann. She didn't want to sit around for a year waiting to see dr V in Philly I guess! 

Last week she had her 9 month visit to the doctor and she still has fluid in her ears. He said I couldn't push of the ENT any longer. So, today I brought her in and Dylann will have to get ear tubes in both ears on September 12th. So, her first surgery is much sooner than we thought. 

Going to philly ..

Ever since Dylann's orthopedic appointment last week the treatment plan has been weighing on me. It just feels like nothing was tried and even without an X-ray we are going right to major surgery that involves cutting out much of her ankle bones.

I then got her note from the visit and it said some things that were not told to me during the visit about her prognosis. So, it prompted me to talk with my AMC moms support group. They all said the same thing, something I have been considering for some time, was to go see dr VB at shriners Philly who is the AMC expert. He was at the conference I went to in July so I had a chance to meet him and hear his approach. He quite honestly performs miracles on these kids I've seen. He helps them walk when all the other doctors say there is no chance.

So, I called today and we will be going to philly between March and June of next year to start treatment. I don't know much more than that. I don't know what we will do in the meantime. We might start at MPLS Shriners to see if they're willing to cast her and do a heel cord release in the meantime. I plan to talk with dr VBs nurse about suggestions.  I don't know how we will make this work in Philly. She could need weekly casting and /or surgeries. We have a lot to figure out. Maybe it means we move there for a short time. Lots to consider. What I do know is that I need to know she was given the very best care and I think this is really it.

New orthopedic md

Dylann and I saw her new orthopedic doctor today. She is absolutely lovely and  I'm very happy with our decision to change. She even asked for my thoughts. What a novel idea. 

What I was struck by is how these appointments just never get easier. It still feels like I'm hearing the information for the first time. I really hope that gets easier. The resident said to me how lucky I am that she has no "other" medical complications with this. Our other doctor used to say that each time and it infuriates me. I know people mean well when they say it and I'm sure some reading this May have said some version of this to me at times. I really do appreciate the sentiment but it doesn't help. I know how lucky or blessed or whatever I am and she is. It's still hard and it still sucks. Ok.. I feel better :)

This doctor is much more conservative on when to treat then our other one although the overall plan didn't change. Here are the facts:

Dylann needs major reconstruction surgery on her feet and ankles and this will happen between 1 and 1.5 years of age. She will do each foot separately to lessen anesthesia time. 

Dylann's knees are ok for standing. She's worried about her right leg quad strength to be able to support her weight so we will have to keep an eye on that. 

Dylann had another X-ray today and her left hip is still very much out of socket despite our hope with craniosacral therapy. Her body has created her own new socket with the current position. It's above and a little out from where it should be. Her normal socket place is just one straight bone now. So the decision is whether it not to treat it. Kids can walk fine with hips out and have no problems as adults. Dylann will however have a left leg that is about 3/4 inch shorter than her right when she gets to full height. She will need special shoes to support her in keeping her hips still in a neutral position. 

Sometimes not treating it causes the hips to tilt as she grows or pulling on her spine causing scoliosis. Then the only option is to treat it. That isn't easy either and would require major surgery at 2.5 to 3 years. She said they have to somehow recreate a socket from her now straight bone. That doesn't sound easy.

So we see her the day after Dylann turns 1 to see if her feet are big enough to start all of this. 

Updates

It's been awhile since I posted so thought I would write a quick update. 

First, I'm trying to finalize a few things for the 5k and then I will post the race website and open sign up. I'm trying to change locations for a few reasons and hope to know this week. My goal is 200 runners so hopefully you all will consider running/walking in it!

So Saturday the 12th will be one year from our ultrasound when we first learned of Dylann's condition so I've been thinking a lot about the last year. While we still have no cause or explanation, I am so happy and blessed to have Dylann here with us and doing so good. I am thankful everyday. The 12th was also the same day our second level ultrasound MD suggested termination and everyday I  still feel mad about that a year later. I can't even imagine not having Dylann here with us. That is part of the reason I feel so pulled to help support amcsupport through this 5k and the wear blue on the 30th to raise awareness for our MDs as well and be better able to educate and support parents. 

Last week I had the pleasure of going to the 9th annual arthrogryposis (AMC) conference put on by amcsupport and it just happened to be in minneapolis!! It is comprised of medical and support sessions for individuals and families with AMC. I met some great people and attended some medical sessions that has me really thinking of new plans. I'm thinking of increasing the amount of PT to include outpatient and the school services she is already getting just to gain as much range of motion as possible. The other noteworthy consideration is regarding visiting yet another orthopedist. Last month I made the decision to have Dylann see another orthopedist at gilettes  and our first appointment is in August with her. At the conference the country's AMC specialist was there for some talks and he is on the organizations board of directors. I'm torn about taking Dylann to him instead. His strategies are different and he has dedicated his career to working with this condition. The concern is he's at Shriners in Philadelphia. It's hard to know what's the best thing to do for your child at times with this as an option and living within 30 miles of gilettes and Shriners MPLS. I'm not sure what I will do at this point.

Otherwise Dylann's treatments are going well. Her craniosacral therapist has moved her to every 3 weeks since she's maintaining so well in between. We did MNRI for 3 sessions and stopped because Dylann absolutely hated it. For a baby who never cries, she was telling me something. I may revisit when's she's a bit older. Her phys/rehab MD is going to start using Botox in her ankles and knees in a few months to loosen the muscle tightness. That was something I hadn't heard or read about but we'll try it!

Were on our first family vacation this week! So that's pretty much it from hill city SD!

Save the date!

SAVE THE DATE: Minnesota first annual charity 5k for arthrogryposis on Saturday September 13th!! Then you can head over to nickel dickle days in Waconia after ! I'm in the very early stages of planning it so more to come but it will be in St Boni and it's a family walk/run 5k and hopefully a short kids run. Hope to see everyone there. I'll post the race website when more details are finalized.

Genetic results

Miss Dylann has had quite the week!! First she did her first roll from back to stomach and independent sitting!! We were told she wouldn't be strong enough to meet her gross motor milestones on time. Well, they clearly don't know miss Dylann!! :)

She saw her other neurologist this week. He was very happy with her progress. He said her muscles all look great. There is some expected weakness in her calves and her left shoulder but they continue to get stronger between sessions. We don't have to go back until she's a year. 

Not sure yet if we are going to start MNRI that I put in my last post. We had our initial session and it's very expensive and her only opening is at 1145 on Thursdays. That would be a 2.5 hour round trip adventure so not sure I can swing it for work. I'm going to see if insurance makes the exception (doubtful) and get some more info on its effectiveness from our OT before making a final decision.

I also started working on starting a annual 5k in Minnesota to raise money for arthrogryposis awareness. Through my research, I found a Facebook group for moms with children who have arthrogryposis! So I have been learning a lot. I get to meet many of them at the annual conference in July. I also met a mom who lives in Minnesota and takes her child to gillettes. They see the orthopedist I was thinking of switching to and love her! So, I think I have finally made the decision to change! I'm going to call the nurse this week. I feel so much better about this decision!

And lastly, and possibly the beat news, I got a call from Dylann's genetic MD today. All of Dylann's tests came back normal!!!! They ran a panel of 9 distal arthrogryposis diagnoses ( sheldon hall, freeman, beals syndrome, etc) and a carbohydrate deficiency panel and everything looked great. She doesn't have anything else she would test for at this point and will see her again at 1 year. So we still have no cause or reason for her condition, but I'm thrilled with this and am okay with not knowing now that the last group of major diagnoses has been ruled out.

Phew... And it's only Wed! :)

Treatment plan updates

A few things have happened in the last few weeks. First, I attempted to get new braces through Dylann's physical and rehab MD. She has recommended we keep stretching her ankles despite the stop in trying to correct their placement with casts. Her physical therapist 

agreed. The problem is Dylann has outgrown her other ones. Jeremy took her in Friday after an order from the nurse to her fitted for a different off the shelf kind for now. Well the orthotic tech didn't have a clue what we were talking about so after a long appointment he ordered her something. I was at gilettes today for another appointment and asked if they were in. A different orthotic tech came in and said what was ordered wouldn't work and wanted to see what her orthopedist said today who ultimately cancelled the whole plan. He said it wasn't worth spending anymore time and money on braces that won't do anything. To which I told them how frustrating it is when each MD tells me something different and I run in circles.

The rest of that orthopedic appointment was equally as disappointing. He said her ankles are too small to operate on yet and that she's very petite. The risk would be he would have to redo the surgery in a year anyways. He said he needs to lengthen the heel cord as well as remove a bone from her ankle to have more room to get them flat to the ground. He said maybe in 6 more months she'll be ready. He also said he won't do the hips with it and that will be when she is over a year to se her desire to ambulated first. He again stressed the 25% chance it will redislocate and have blood supply issues even with surgery. Momma left pleased from that appt per usual.

We are going to start a new therapy that angel recommended so I'm feeling hopeful about that it's called  mNRI or the masgutova neurosensorimotor reflex integration. I don't fully understand it all but it has something to do with the genetic motor reflexes and resetting the nuero pathways for her to move her joints better. I know that it's weekly to start plus 5 to 10 hours of things I will do at home to allow for the repetition. It's expensive so I'm in the process of drafting a letter to our insurance to see if they will consider covering it since it's excluded. 

So, not too much going on, lol. She turned 6 months old yesterday and absolutely loves her big brother!

April updates

Things have been somewhat quiet this month. Two days after my last post Dylann spent the evening at children's hospital for pnuemonia. She's doing much better now but made for an interesting birthday for Micah. 

Dylann's craniosacral therapy is every other week and is going super well. Dylann's getting a lot stronger and is almost sitting by herself despite what her neurologist said about her core strength being behind. We've been working a lot on her shoulder strength and trying to have her start to put weight on her knees.

We got our approval letter back a week or so ago from insurance to cover her genetic testing so she went and gave blood Monday. I think it will be a 2 to 3 month wait now.

Dylann saw the hand/arm doctor at gilettes yesterday. They wanted to do an assessment to see if she needed any interventions on her arms. Luckily it was the first good news appointment. The MD said they are perfect! They are the right measurements and tone and full range of motion. She still has some tightness/weakness in her left shoulder but therapy is working on that. The doctor said Dylann was far above average for kids with arthrogryposis in her upper extremities! I can stop worrying now about the nurse who told me her arms were too short in the hospital! :)

The next appointment with orthopedics is May 14th. I'm anxious to see when he's going to operate on her ankles. She's still happy as can be!

An official diagnosis in sight?

Dylann has had a busy week! It started off with craniosacral therapy last Monday. Angel continues to talk about how great Dylann is responding! She is learning to do a lot of things on her own between sessions. I asked her if she thought this work can help with muscle development after the conversation I had with her neurologist last week. She said absolutely. She also very nicely told me to stop asking the doctors prognosis questions because she has seen so many kids defy and go so far beyond what MDs have said. :) it was something like "I would invite you to not ask them what if questions." Lol. I think it's hard as a parent because it would be so lovely to know what the future holds for her so I can know how to be a better advocate and support for her. Angels right though, it ultimately is unpredictable and just causes me more angst. So, I vow to try to stop asking! :) 

 Dylann had her hearing retested in her left ear and there's still fluid being retained. We are to check back when she is 6 months and her ENT may consider tubes. She's talking up a storm though so it doesn't seem to be hindering that in any way! 

 She had physical therapy and occupational therapy as well last week. Daddy even got to take her! They were happy to see how much stronger she'd gotten since her last session. She has developed some torticollis so we are continuing stretch for that. 

 She had a busy weekend ..her brothers 4th birthday party and her baby dedication. I added a picture below of her in her pretty dress!! So smiley like always.

 Today was the appointment where we might be making headway on what caused her contractures. She had an appointment with her genetic MD at Children's. The last time we were there Dylann had her casts on so Dr Dugan hadn't seen the banding. Both her and her coworker looked at the marks on her calf and thigh and are actually confident that they aren't from amniotic band syndrome. I think she had wanted to conclude it was that because then we would have a diagnosis and it would mean nothing genetic or otherwise was going on. So, she is testing her for a panel of distal arthgryposis conditions that happens from a mutation in a gene that stops the creation of a protein that is only needed uetero for muscles and joint development. One of possible diagnoses is what I have thought she had from day 1 so that may be confirmed soon. Mothers know best, right! The good news is that none of them are progressive and things will continue to improve since that protein is no longer needed. The bad news is that it's dominant inheritance so her kids would have a 50% of getting it if she has kids someday. There is another metabolic panel she is running at the suggestion of her coworker because Dylann has inverted nipples and joint issues which are two main symptoms of the diseases. These are much more progressive but her MD doesn't think she has them since she has no developmental delays and almost always is seen with that diagnosis. It will take 3 months to get this approved by insurance and processed by the lab. We are good at waiting! :)

Getting bigger!

Dylann turned 4 months on Thursday! I can't believe it's been that long. She had her well baby appointment this week and has moved on the charts to 10% weight and length!! She's talking non stop and so smiley and happy!

Her last craniosacral appt last week went really well. Angel said she's starting to maintain all the things she's doing for her so she can do a lot of her own work between meetings. We are moving the appointments to every 10 days. 

Dylann had a follow up appt with her neurologist this week. Overall it went pretty good. He wants to see her one more time at 8 months to make sure nothing else creeps up but he doesn't think it's neurological and feels she's progressing fine cognitively. He said we should spend time with the doctors who can more impact her motor needs to get her walking and running.

I told him my concerns about whether or not to treat her hip since there's a 75% chance only of success and kids can walk with displaced hips. He said "dr sunberg is the best around; I'd let him operate on my child. I know he's not the most warm and friendly guy because he's busy and always running but he's the guy all the doctors in town send their kids to. She's in good hands."  And that's that I guess!

We did spend sometime talking about her muscles so I asked him if he thought that as she grew if her legs would start to look very thin and atrophied. I had seen this in a lot of the literature I had read. He said he suspected her legs would be very thin with little muscle and have thinner arms. It mad me feel a little sad all over again which happens after most if her appts. Like I'm back at that first appt all over again. I just worry about how others will treat her throughout her life. High school was hard enough for those of us who didn't have a medical condition. It seems more harsh now. I don't ever want her to feel bad or different but I know I can't control that. :( I also know things could have been a lot worse with the laundry list of things that can cause this so I know to be very thankful and grateful. 

Next week she has physical therapy, craniosacral therapy, her hearing rescreening, and a follow up with her genetic counselor. I think she is going to start testing her for more things to see if we might be able to get some answers as to what caused her arthrogryposis some of which would be hereditary if she has kids someday.

More doctors

Things seem to be picking up again. It's hard to keep up with all this and be back at work full time. Hopefully the appointments will slow down eventually!

Dylann has had 2 meetings with her physical and occupational therapists and have been helping a lot with stretching and strengthening her left arm muscles. 

She continues with Angel for craniosacral therapy which is going well. We keep working on her hips and legs. Her orthopedic MD even commented on how much her left knee had improved.

Last week she saw a neuromuscular neurologist for a consult to see if he thought there might be any muscular issues that are the cause of her arthrogryposis. Overall he thought her muscles were doing well. He said she has mild muscle loss on her shoulders and thinks she might have had some nerve damage in her left shoulder due to positioning in utero both of which will strengthen over time. He doesn't think her arthrogryposis is muscle related. We will see him again in May though to keep checking in.

This morning she started with physiology rehab MD who will keep monitoring her to see if we ever should add more services. She thinks she's doing well for now. She wants us to use her braces a few hours a day again just to stretch her ankles to help continue to increase her range of motion. Otherwise, just keep on doing what we've been doing. 

Next month we take her hearing test again and see her genetic MD again to test for a few more things. 

February updates

Not too much has been going on lately. Dylann continues to go to weekly craniosacral therapy and we continue to see little improvements. We just finished our assessment with the birth to 3 program and Dylann will be starting physical and occupational therapy with the school district twice a month.  We also meet with gilettes rehab MD soon to see what else might be recommended.

Dylann had an appointment today with her orthopedic doctor at gilettes today. He took an X-ray of her hips and the left one was still out. He thought her knee range of motion had improved some. Her ankles looked the same, not better, not worse, so he said she can be done with her braces now. He said he wanted to keep waiting to see what she decides to do with her motor skills so he wants us to wait until she's 6 months to check back. He said if she wants to start ambulating and is pulling herself up etc then he would be more eager to do her hip surgery and ankle surgery sooner. Otherwise he's in no hurry I guess. 

So her legs will get some freedom from all the restrictions she's had since two weeks old and we will take a 3 month break. We see the neurology specialist Friday who specializes in arthrogryposis to see if we are missing anything.

Hearing update and second opinion

It's starting to feel like we are going to unnecessary appointments. Dylann and I went to her ENT appointment yesterday as was a required next step for her hearing from the state. Not sure why they so closely monitor it. Anyways, we were there 2 minutes. He looked in her ear with the same instrument that our audiologist and pediatrician used and said he saw fluid and to recheck her hearing in 2 months. Ok, why didn't the other 2 docs see fluid ( why they sent us in the first place ) and why can't you look to see if the fluid is there in 2 months instead versus the 2 hour hearing test. Protocols I guess. Good news is once the fluid comes out she should hear fine. He said he is in no hurry to place tubes and will just do as last resort since she hears fine out of her right ear so it won't impact speech development.

Dylann and I conquered the snowy commute Tuesday and went to Shriners to see what they had to say. They were lovely; glad we went. The orthopedic surgeon said the same thing essentially as far as treatment planning that gilettes did. He did however take the time to explain to me why so I did feel much better. He said he might or might not treat her hip if it remains out (angel and I plan to solve that) because it isn't always worth the risk since kids walk just fine with hips out.  They lose some side to side range of motion but otherwise move fine. He said the brace won't work for her hip like it does for kids with hip dysplasia because with arthrogryposis it's stuck out and can't be moved back in like regular hip dysplasia... Hmm, well see about that. 

For her knees he said her right knee already moves enough to walk and then her left knee is in a "better position" to walk already being stuck straight. He said you don't want to gain range of motion to lose other good range of motion. If they do surgery on it , it might bend but not straighten. He said to walk that would not be a good trade off and it's better to see what can be achieved through her PR and cranial sacral for better range of motion. 

He agrees the ankles need surgery but thinks it wil correct them fine. He said the harder part is maintaining the progress so braces will be needed for awhile. 

I asked him directly if he thought she could walk. He gave me the usual I can't predict the future response but then said, but I don't think it's fair not to answer that for parents. He said that yes the chances for her given what we talked about are just fine although she probably won't be a gymnast.

Later I talked with the nurse and she told me our current doctor used to work at Shriners and really is a great doctor. She said that in her experience if you slow him down and ask questions he is happy to take the time. So, we may just stay at gilettes if he's willing to spend more time doing what the Shriners doc did. Even though it was the same plan, that conversation felt completely different. 

Hearing and craniosacral

Yesterday Dylann had her craniosacral therapy appointment. Her hip was in place when we were there!! I did her stretches several times throughout the week so we will keep doing that and hopefully as she grows it stays in place. Angel did a lot of work on her legs and encouraged us to continue those knee and ankle stretches at home as well.

Today Dylann had her second level hearing test. It is one where they look at her brain activity in response to the sounds. She managed to stay asleep for it which was helpful. She does have moderate hearing loss in her middle left ear. Her inner ear can hear well so it hopefully isn't anything permanent. The audiologist said she got a 50 so she hears muffled at regular conversations but can hear loud noises or things close to her ear. She thinks it's due to fluid stuck behind the ear drum so she is going to see an ENT next week.

Genetic testing

Our genetic doctor just called which I have to say scared the crap out of me since she made the call herself. BUT she said our testing came back and Dylann does not have myotonic muscular dystrophy! That's the only progressive thing she was just slightly worried about so was the only thing she tested at this point.

We are also scheduled for a consult at Shriners on the 14th for their orthopedic recommendations. I called U of MN Amplatz and Mayo and they said with the  rarity of her diagnosis they didn't feel they could do a good assessment. Both recommended Gilettes or Shriners.