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!!