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!