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!!

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!