But first... Asher.

So we have a MAJOR surgery coming up for Dylan but to ease me into it, we have a little test run tomorrow with Asher!

He has an extra central incisor. So basically Dylan is missing one of her two front teeth and Asher got three? Funny jokes.

Normally when you have adult teeth following baby teeth (you know, like normal people) the adult tooth gradually pushes up to the baby tooth, dissolving the root of the baby tooth and then the tooth falls out. The adult tooth peeks through, comes down and all is well.

Never to take the 'normal' path, the Anderson's have to do it their own way. 

Asher has an extra tooth in the middle of his front teeth, and so the adult tooth isn't lining up with the baby tooth properly and is instead actually kind of growing straight forward above his teeth, and to the other side of the full root of the baby tooth that it should replace. The root of the baby tooth is full and in the center of the two.

We've known about this for a year (x-rays are cool) but we were waiting to see where everything was going to line up. They really don't like to go in and take out the extra teeth until the adult teeth are more established because it's too easy to accidentally damage the roots of the permanent teeth.

We consulted with an orthodontist and an oral surgeon and ultimately it was decided to go in and take out the baby tooth that appears to not be going anywhere, the one next to it, and the extra tooth to basically get everything out of the way of the adult tooth to let it drop down. Once it shows itself they can look at how it's lining up and then what they will do is put a bracket on that tooth and pull it down and into place with braces. CRAZY.

We had to wait until the other, well behaving, permanent incisor was a minimum of half way in before we started the process. Asher got a cat scan (which was COOL) that we had to pay for out of pocket (which was NOT COOL). They have to do the surgery at the children's hospital which I'm quite familiar with at this point. Their reason is that he's so tiny... but I'd MUCH rather have it there rather than in an office as well! Our Pediatrician was also quite relieve to hear it would be down town.

His surgery is scheduled for tomorrow afternoon at 3. 3! He can't eat anything after midnight but he can have clear liquids to 11. Is that crazy? I'll be keeping him home from school tomorrow because of the whole no eating thing, no sense in punishing his poor teacher because he can't eat.

I'm told it's an easy procedure and kids are usually back to normal the next day. As for Asher, he says he's not nervous, he's just excited for the 3 times multiplier from the Tooth Fairy.

The big one on the left is supposed to be there, the little one on the right isn't.
It's got to go, with the one next to it. Where are my pliers?

I don't even know what's happening here. But there's an extra something in there somewhere.
(He also got in trouble for moving, hahah.)

But he's my bayyyyby. (I have a few of those.)

This is my neighbor Cami's son who actually had the exact same issue.
(Seriously, weird right?) Look at his pretty teeth now! 

Dylan's Pre-op Appt.

I guess I might not have updated with her surgery date. We have known about needing to do this since November but Dr. L has a wait list! So we had to wait for our turn. I was given three dates to choose from and we chose March 21st, which is the week before spring break here.

Dylan and I spend most of our day at her pre-op appointment with Dr. L and the anesthesia consult and man, was it a long morning! We got there at 9 and with a quick store stop and picking up Greyson we walked back in the door at 1:50, right before the boys get home on early day! For a minute there in the Lab waiting room I wasn't sure if I was going to make it back for the boys. Now that's a long day! She did so great all day, we played and she was so happy and fun.

Dr. L was running late (it's his MO) and he was super fast in and out of the room. An Ortho resident came in first and then he went to get Dr. L. I really didn't get much more information than I already had, he did a quick run down and then the physical part checkin all of her rotations and her flexibility in her legs and hips.

As for the actually surgery - He said there will be a large incision on the outside of her thigh, along her femur, where he will do his magic and he will go down lower to her prior incision which he will use to remove the plates. He will use the same small incision on the inside of her thigh to remove the plates on the other side. Small is relative I hear, her scars are 3-4 inches long, he tells me that's small. The new plates will have to be taken out by an "easy outpatient procedure" in 9-12 months. They will just be on the outside. Easy outpatient procedure... uh huh.

In my post explaining it all I mentioned that he may have to lower her kneecap depending on where everything lines up but that's basically the plan now, I think they will indeed have to do this. To do it she will have a long scar going right over each knee. Baby girl gonna be tore up. Poor thing. We  got another xray of the side of her legs so he could see the current set up of her knee.

After the surgery that got us in this mess she bled so much on one incision that I had to take her in for them to clean her up and re-bandage it. All of these incisions will be covered with a cast! So... then... uhmmm... this is how it works huh? She will have these huge incisions that he can't see until the casts come off.

As I mentioned, she will leave the operating room in full leg casts on each leg with her legs straight. She will be in full casts for at least four weeks when we go back in for x-rays. As long as everything looks good then they will cast her for removable casts that we will need to put on her every night. He said kids tend to curl up to sleep and we need for her not do do that.

Man, she's going to be ticked.

They will need to arrange a wheelchair with leg extenders to keep her legs straight. I have no idea what this will look like, how we will go in the car, how she will get around. Uggggghhhhh.

After one of the nurse practitioners came in after and spent a lot of time with me to try and give me as much information as possible. It will either be her or Natalie (who is the one I saw at clinic that got this big beautiful ball rolling with Dr. L) that I see the most of when Dylan is in hospital.

She will be in the hospital from 3-7 days, I am planning to stay in her room. The NP said they have a private bathroom, small fridge and futon, so I will probably be camping out there for as long as it takes. There was a brief conversation between Matthew and I on who would stay up there with her but yea, it was brief.

We got a proactive bowel routine in place, basically a complete clean out leading up to the surgery and small doses of Miralax in the few days leading up. I'm REALLY nervous about her bowels. It's a challenge on a typical day, add a knock out, pain meds and immobilize her and I have no idea how it will get all get resolved.

After Dylan gets home and as soon as possible she will need to be up in the stander or even in the GAIT trainer to walk around. This depends on her pain level but 1-2 weeks is his guess. It's going to be so much work, we will basically have to be in front of her entertaining her for four weeks! The plan is to have her in her stander next to me at all times. We might keep her home from school, or maybe I can go with her to school for a couple hours a day, I don't know. We have to figure out her transportation before we have any idea of that. So many things are up in the air.

The consult with the Anesthesiologist was a lot more detailed and into the nitty gritty. It was almost a complete medical history with prior surgeries, medicine, seizure info, the works. I didn't have 100% of the specifics but I provided as much information as I could of course. I gave the information to a nurse doing the pre-op questionnaire as well as the Anesthetist. Then they went and got the Anesthesiologist, I believe her name was Linda but I'm not sure.

Most of the Anesthesiologist I have met have been older men or young cocky guys. This was an older (than me ;) ) lady and she was very kind. Total mind bend.

Into the conversation she asked if it was hard to get an IV in Dylan and I said yes and she said she could see all of her scars from where she was sitting which was like 4 feet away! She said she could even see them on her wrists and she said usually only the Anesthesiologists go for the wrist so she had guessed she would be tough. They decided to make arrangements to use the IV team the day of surgery. (Yay! Even though she will be asleep by the time they do an IV, the bruises and pokes make me sad.)

Toward the end of our meeting the Anesthesiologist actually said "You know so much about her and were able to provide so much information it's been a true joy meeting with you today!" It was so funny, and SO sincere. You get all types in there I'm sure! I told her I like all the details and I'm a chart reader and probably know way too much about just one specific little person. She was great.

It was nice to be able to go see where we will be going on Friday for Asher's oral surgery. Even though it's so simple compared to Dylan's I'm still a bit nervous. At least knowing where we are going and meeting some of the players is helpful. I asked the Anesthesiologist if she was working on Friday and she told me she wears many hats and won't likely be in the OR but she will probably see him when he's released to go home. She seemed genuinely excited to see us again.

A lot of kids with Holoprosencephaly have Diabetes Insepidis, even though we've not had an issue on a day to day basis, in the past Dylan's sodium got way high after a surgery due to the sodium in the IV fluids. After that issue, for subsequent surgeries, we have had to use the low-sodium drip. They decided to get a panel done on Dylan to get a baseline for her sodium. I'm not sure if they will use the low sodium drip like they have before but getting the baseline measurement will help them keep an eye on her post surgery to see what she's doing.

Dylan also used to get stress doses of Hydrocortisone and I know at least for the last surgery they gave her a stress dose just in case. I guess here they regularly give the kids Zofran and some other sort of steroid so they don't get upset stomachs and wrenching ( :( ) and she feels that that dose of steroid will cover a stress dose day of.

And that's about it! We are getting closer and closer to the big day. I tried to take pictures of in the office but she knew I was trying to get a picture so she refused to look at my phone! Stinker.

If you know her, she even looks like she's smirking a little here. 

Stinker!

We had to wear stupid paper shorts for the x-ray. It was cold!

Dylan met Santa! The *real* Santa!

First - We have no update on Dylan's surgery. Just that I saw Dr. Loveless when we went in to get Duncan's arm cleared and he said he had put the orders in yesterday. That was WEEKS ago, but you know... Christmas and insurance and all that stuff so gah. It's hard when you think you have an answer and something that might help and then everything is on hold.

We also went in for Dylan's EEG. We had to have her tired and we did an excellent job of that. Matthew stayed up late and I got up at 5 to wake her. I had to sing and dance in the car on the way to the hospital so she wouldn't fall asleep and we couldn't put her in her chair going in but it worked, and she slept when she was supposed to.

Miraculously enough, the new neuro reviewed her EEG and met with us the same day, not long after actually. He said he scans look normal (for her) and there isn't anything out of the ordinary (for her) and unexpected so we are staying on the same meds that we have been on for years. No changes there, yay. We are apparently supposed to have an EEG every 6-12 months, but the doctors here have been nice enough to stretch it out to the 12 months unless something comes up because they know what we have a lot going on.

On to the show! Dylan met Santa! She got a new bike!

Dylan's therapist Rachel put her on the list for an adaptive bike. I'm not sure how this works, the program is run through Wolfson's Children's hospital and it's totally paid for. 16 kids got new adaptive bikes this year and Dylan was one of them!

We had a bike in Utah that a friend gave us when their daughter grew out of it and we used it a little but it required that Dylan sit on the seat since there wasn't a belt (or enough of a belt) to hold her in place. We donated it because we didn't use it enough and knew someone would. I think it went to the school. I was excited to have a bike that fits her!

Once a child is approved and fitted by the therapists they order the bikes and the firefighters assemble them. Then you go see Santa and he gives them the bikes at what I now know is the Christmas party for the Firefighters Association of Jacksonville. It was a BIG party!

There were all kind of important people. Or people that fancy themselves important... the chiefs of everything, the mayor, the state attorneys office... person. Lots of people wearing fancy clothes and women wearing a lot of make-up talking about newspaper write ups about themselves and joining country clubs. Some people would say hi to me with the "I'm sure you recognize me" air about them... and of course I didn't.

I didn't know how long we would be there so I went with Dylan by myself and needed company would have been nice to have Matthew there but we didn't know if it would be over before the short day of school. Of course I know that there would be a lot of picture taking so I cleaned Dylan's nose before we went in and apparently I struck an artery because the edge of her dry little nose kept slowly bleeding and bleeding and I kept wiping and wiping. My word. I know most people aren't going to notice that right away but honestly... if you could stop bleeding I would appreciate it.

Once we went in, she got a little name tag and fitted for the cutest little helmet you ever did see. I signed some waivers saying it was recreational equipment and we will not break our arm on it (or at least not sue if we do). They also made sure we signed the thank you card for Santa. I assumed this card went to the people who run the program at Wolfson's. I think I properly conveyed how grateful we were for Dylan to be able to go on walks with us.

So there's a nice feast set up there and... vegetarians for animal reasons, skip ahead after this paragraph. THERE WAS A PIG. Like they legit roasted a full pig, shoved and apple in it's mouth and gave it Bud Lite eye bottle caps for eyes. It was a pig yo. My phone was dying so I didn't get a real picture but I took a screen grab from a video I saw online from the firefighter chefs to send to my favorite people to gross them out. I wasn't terribly comfortable dishing up off it's carcass... but it was delicious.

Me eating, then meanwhile, Dylan has apparently hooked a finger under her hair and pulled it out of her pony tail. I couldn't leave it! Could I? But the rubber band would break if I pulled it out and re did it... was it worth the risk? What do I do?! Honestly, I couldn't leave it, so I pulled out the band and what do you know... it broke. I literally broke a sweat trying to tie that little tiny rubber band back together to give it one more shot. I finally got it and got it in her hair, phew! I could breath.

Psych! She did it AGAIN! She pulled it out again! Then the band broke again and there was no hope for a second repair. But if I pulled the other one out, the other band would break and I would have nothing to tie her hair up with for even a single pony! Gah! Honestly! Crisis!

Nose bleeding, one half-hair done, mom breaking a sweat. You know at this moment I just knew it was going to be Dylan's turn to see Santa!

So I thought maybe they would let me have a piece of pipe cleaner (We made antlers for her helmet!) and I would some how tie it up with that. So I asked and this wonderful angel with flowing golden hair and wings said "Oh, you need a hair tie? Here you go!" She had what I feel was a little miracle on her wrist! So I take it back to Dylan and wrap it around her tiny pony about 25 times but for the love, we have two adorable ponies again and are ready for our photo ops!

(Lesson learned, I plan to have tiny rubber bands in my purse, in my car, in my bags... Matthew's going to hate this.)

They made a big deal about Santa and Mrs. Claus arriving, big, huge... it was time. They came and got the kids one by one when it was your turn and it was run like a very fast machine! When it was our turn we went up and sat down and about 6 cameras appeared right before our faces. Like so many you have no idea who to look at and when, and what in the world was going on, and chaos. She gets on the bike, more photos, and she's wheeled out the door. What in the world just happened!?

Santa did that thing that a lot of the Disney characters did where they stopped me and looked at me and gave me an extra hand squeeze, or an extra tight hug. It was so cute and I loved it but I felt like I was being pulled away. Nice Santa.

Outside she was fitted by a therapist from Wolfson's and it was AMAZING! She has a bike that fits her and holds her in place! Even the ones at the therapy place aren't fitted specifically for her and it was so fun to have her in it! She actually pushed herself a little bit. Yes!!! This is what we need! I think this will help so much with building her muscles once she gets out of her casts! I'm so excited to use it.

So Santa is done with his whirl wind and walked out waving and saying goodbye and one of the therapists said "Santa wait! don't move we have something for you!" Santa was so funny, he turned around, arms in the air waving and didn't move... She ran to him with the card we all signed and gave it to him. I'm not going to lie, I thought it was a little weird that she gave him the card. You know, the guy that showed up, hugged babies, and left? But whatever...

So there have been pictures here and there on social media about it. It was a big fancy thing and it a huge deal. One of the articles said that an anonymous donor pays for the bikes every year. Light bulb, are you ready? I think Santa was the anonymous donor! How amazing to be able to give anonymously but yet be right in the middle of it! He gets to actually give the kids their bikes and see how happy they are! Amazing, so freaking amazing. This kind of generosity and being the beneficiary of it is totally humbling.

It's really sunny and nice outside today (It's going to be 80* two days before Christmas!) but I put her on the bike to try it and she loved it when she was moving. when you stop she does that like jerk forward thing like "Why are we sitting here let's go!" Which is great. She pushed it a little but her right side is tighter and she would slow or stop when that leg was at full extension. We will get it. For now she is super happy just pedaling with someone pushing. I loved that she enjoyed it even when the sun was shining!

I think Santa was whispering something to Dylan the whole time. I don't remember him saying anything to me but it certainly looks like she is listening. 

Can we talk about how adorable this picture is? Oh my word. I can't stand it.

This is Lisa - She's form Wolfson's and she arranges this gig. 

Dylan got a bear from The Caden Project (And mom got a firefighter calendar, woo woo.)

Today on her bike.. She is happy, you can't tell though!

Dylan and the cutest little helmet there ever was!
(And a messy room, I cleaned it yesterday! She has late night parties and trashes it. Like a rock star.) 

Ahhh Orthopedics...

We finally got our appointment with Dr L! Not finally as in we waited forever but it was the longest four weeks of waiting because I feel like we just got the ball rolling, let's not it lose momentum! And with Christmas vacations looming, I don't know what that might do to the calendar if we do something (which we will, you know we will...)

Last week we went in for our scheduled appt and there was no appt scheduled. I saw on the board that Dr. L was "delayed" whatever that meant, and I knew if they had to fit us in we might not get the attention I felt we needed. I'm pretty flexible anyway, it's just that I was so excited! I told the lady at the desk that he would remember her scans, if she asked I'm sure he would know who she was. She came back after a bit of a wait and said that he is already running 2 hours behind (!!) and because he said Dylan would need a longer appt, he would not feel comfortable trying to squeeze us in. We scheduled for an appt down town, 6 days later. I didn't realize the kids were out of school this day, so I had to have Matthew rearrange his schedule to be home. Taking 5 kids was not an option! This was serious business! We were fixing problems!

Dr. L was right on time for us and he spent a lot of time in the room talking to me and answering questions. About her surgery that she had in Salt Lake, he said he's been around a long time and he has seen how different surgeries go in and out of favor, he said that the whole process takes about 20 years. He predicted that after 10 years, he said this surgery won't be around any more. He said it simply doesn't work. All the data is documented and it had good intentions of being less invasive than the other options, but after years of doing them, he's yet to see where it's actually done want it's expected to do.

Flat out, he said this will not fix the problem it was intended to fix.

He said he's removed them from several children already, some of them done by colleagues of his that have moved on. He spoke of questioning them at the time why they were doing it and they all referenced the data provided by the doctor out of Salt Lake. (Not Dylan's doctor, but another that mentored him.)

He asked me if I felt like she was in pain. I told him that she was a hard read because she has such a high pain tolerance, but there has to be something going on because she has the desire to walk. He asked and I explained to him that she walked all the way until the surgery and hasn't walked independently since. That's when he broke my heart when he said every verbal child that has had this surgery has told him how much it hurts.

At the very least, we need to get these things out. Stat.

He asked what my intentions for her walking are. I told him that she loved to walk when she walked. if it makes her happy, then I would like to facilitate it for her, but I was also fine with her getting around like she does. We aren't the type of people to put her in intensive therapy to get her to do something she does't want to do and wasn't made for, but we will do our best to see that her needs are fulfilled.

To fix this type of problem in the past they used to cut tendons. I knew this, I also know people with horrible scar tissue and movement problems because of it, years later, when things don't work like they should. He said you go in there and then expect everything to work correctly when you have this 'stuff' in there restricting movement.

Because of this, he said he's a bone guy. He said bones are predictable. There isn't any scar tissue and you have an infinite amount. They fix themselves! He outlined a plan to 'fix' her. It was to cut a piece of bone out, thereby lengthening the tendons in relation to the femur. Completely straightening the legs. He explained, he cuts the bone, straightens the leg, and cuts off where it over laps. (*ick*) Sometimes they have to move the patella, but that depends on how things look after the bone is cut. He hard casts in surgery and the child comes out with straight legs.

He said it's awful for 4 weeks and there's not much he can say about that. He added that not much he does that doesn't cause discomfort for at least a little while.

Whether or not he recommends the surgery really depends on the parents, they have to put work in after and if they aren't willing to get the child moving and on their feet, then it's not worth it and he won't put a child through something that won't pay off. The child should be made to bear bear weight when they come home from the hospital so when they take the cast and knee immobilizers off standing is not a sudden thing.

Here's what we are looking at. Option 1: Leave things the way they are. Option 2: Get the staples out now, wait, and decided on the bone surgery 6 months down the line. Option 3: Get the staples out and do the bone surgery all at one time.

That's it. Have any questions?

I did...

I asked him what the recovery was like and he gave me some detail. There would be three days int he hospital after. He said he likes to do an epidural to manage pain because they can't come back from pain so he doses high doses at first. He said it's up the anesthesiologist on the epidural because of what she has going on back there. I told him she's had a spinal tap and didn't finish my sentence before he said "I'll tell you right now they won't do an epidural." Which is what I figured anyway because my add was that the neurosurgeon said that they shouldn't have ever done the spinal tap without surgery consulting and we got lucky that that all worked out. For pain they do the pump, so it's a more manual process involving nursing and parents.

After the initial cast they would put her in casted knee immobilizers made to fit her. He doesn't like to cats for long because of muscle break down.

I also told him that they had indicated that she was starting to show early signs of osteoporosis and inquired how we would deal with that if we chose not to do the surgery. He looked at me with a straight face and said "We get her up and moving." Up to this point he tried not to show his cards and his personal opinion about what he thinks we should do but if I didn't know before, this gave it away.

He added that if there were breaks we would consult with an endocrinologist and medicate but if the child is willing and able he prefers not to medicate, ever. And then he told me about his background and his desire for making sure that special needs kids reach their full potential. It was all wonderful and amazing actually, but I will spare you and my typing fingers. Save it to say he SUPER passionate about special needs.

He told me with her track record and the things she has done in the past, he would do it. At the very least, having her be able to bear weight will help with transfers. Even though she is small we will not always be as young and spry.

We ended the meeting with a handshake and me thanking him for looking at her and being willing to take this on. I am just so happy that we are moving forward and I told him that, I've been so discouraged.

I asked more questions and got more information so if I am leaving anything out or if I should have asked something let me know. I would your questions to see if I covered my bases on what I should have asked up to this point. I'm sure I will have more later.

I told Matthew we had decisions to make but really, and we both knew it, we have to come to terms with what we know we should do. And so I make a phone call and get things scheduled, cross fingers and hope for the best. Pray with us. <3 nbsp="" p="">

Dylan's Leggies

So crazy how the last time I actually post was right after this same appointment with Dylan that brought me here today! There's just too much information to keep repeating and I know that we have a lot of family that would like to be in the loop so I figured jotting it down and just sending a link would be the way to go.

A little bit of background with Dylan's plates and screws. In January of 2016 Dylan had the hemiepiphysiodesis which was where they put the screws in growth plates in the front of her femurs. The idea was that she had tight hamstrings and couldn't fully extend her legs and while she currently walked, when she got older and weighed more, her quads would not be able to support her weight. With the screws in place, as her legs grew in the back, and not the front, the hamstrings would gradually stretch.

Long story short - the 'small incisions' to do it were not small, it was a rough recovery and Dylan's never walked alone again except for a few assisted steps. I personally think the surgeons in Salt Lake were a little too eager to do this surgery since it was pioneered there. But that's hind sight, and honestly, frustration, speaking and we were definitely on board at the time so it is what it is.

With her not walking we always questioned whether or not she was in pain because of the surgery or if something was off because of it. We could tell she had the desire to walk, man she loved walking, but just never did it again. A year ago I had an appointment with the Orthopedic surgeon here, Dr. A. and we took x-rays and looked at everything. It was a rough appointment where the doctor basically told me that the amount of extension she needed could never be achieved with this particular surgery. She said it's not the approach that she would have taken for what Dylan needs but she would be willing to ride it out for a little while with a stander and Physical Therapy to see where we go. I left this appointment quite disappointed that this was the route we had taken and that maybe I wasn't given the whole story, or all the options.

Deciding to be a little more aggressive about it and at the advice of her Physical Therapist, who also questioned whether or not something felt off to Dylan, a couple weeks later I spoke specifically to the Physiatrist about what could be done. The Physiatrist looked at the notes from the Orthopedic appointment which basically said "Everything looks great." So nothing, I got no where. The Physiatrist is relying on the consultation with the Orthopedic doctor for their information and the Ortho is saying things look good.

And this is where we've been for a year. Until now.

Over the last month or two I have been struggling because what little walking Dylan was doing prior to the school year ending she lost entirely over the summer. She's no longer pulling to stand, taking steps, and the degree that she can straighten her legs is getting even less. She got de-moted in physical therapy from twice a week to once a week because she wasn't showing measurable improvement. In addition, she's showing signs of puberty which means these stupid (I'm allowed to say they are stupid now right?) screws and the idea behind them would no longer work anyway.

I'm kind of fired up by the time we get to this spinal defects clinic a couple weeks ago because I don't want to bust our buns getting her to make 'measurable improvements' if they were just going to go in and remove the screws and she would have another surgery to set her back. I am kind of at the point of saying 'go in, take the screws out, do what you think we need to do, but can we get on the healing process to get this behind us?'

Dr. A is out on Maternity leave so I will be seeing the same Ortho I saw in clinic last year. (I had seen her and then followed up with Dr. A in an 'in office' appointment, I don't know why...) Let's call her Dr. N even though I only know her by her first name, which is kind of funny, I like her... she's casual, she's great. I express my frustration and what I was thinking and she puts in the orders for Dylan to get new x-rays close to our house to be done at our convenience. I waited until after a PT appt for Dylan, which was last Wednesday and we went in and got them done.

I know I've taken a long time to get here but STICK WITH ME. After we did the x-rays I took Dylan to school, walked in the door to my house and Dr. N is calling me. She told me she reviewed the x-rays with the Chief Surgeon, Dr. L and they have decided that the screws are far too large for the job. He said there is the possibility that they are causing discomfort for Dylan especially if her muscle is having to stretch over the screws which it looks like is the case. In addition because of her lack of walking her femurs are showing ostepenia, a loss of bone density compared to last year's x-ray. Dr. L said he would like to make an appointment so I can meet with him specifically and discuss the options we have.

ARE YOU KIDDING ME? No really... ARE YOU FREAKING KIDDING ME?! She's not walking and struggling and her hamstrings and extension is tighter because of this and a: not only did it happen in the first place, but b: we had an opportunity to address this a year ago and I was told things were fine. (Or at least that's what it said in the notes...) She might be uncomfortable?!

What does this look like for us now? I am meeting with Dr. L in two weeks where you bet I will address the concerns that I have had. On Monday I meet with the Physiatrist and Dylan's PCP at the Medically Complex children's clinic. Hopefully we will be able to get some answers, find a solutions, and be able to get things moving again in the next couple of weeks.

We are blessed that Dr. A went on maternity leave. I will ask to not have her be Dylan's primary Otho. Honestly, if everything looked fine to her and/or she wasn't familiar with the procedure, it still doesn't explain the discrepancy between what we spoke about and what she noted in Dylan's file. That's an even larger concern to me.

We are blessed that even though Dylan might be uncomfortable she still has the desire to walk and stand. Even though it's progressively gotten more difficult for her, she still tries. I think I might have given up a long time ago myself. We just need to pray that she will continue to have the desire so when her body is in the position to cooperate, she will be able to make improvements.

I remember her old PT Mike telling me that she has that drive and that's something that you can't teach kids, please please please, let her continue to have that. If she does I truly believe that she will walk again. And honestly, we don't really care if she walks... she never really walked where we wanted her to walk anyway, it's just that SHE loved to walk! It made her happy.

So that's my little update, I may or may not have more information on Monday after meeting with the Physiatrist but I definitely will have more information in two weeks after meeting with the surgeon.

Crazy long update on Dylan

I haven't blogged in a little while because I have been really busy hauling little miss all around the town to her many (many) appointments! Just this week we had four, in one week, and we aren't even done!

I have been taking Greyson to most of the appointments and he has been so good but I have been feeling a bit bad for him because when we are done with the appointments I am ready to SIT and he just spent all that time sitting. So I don't feel like I have been doing a good job meeting his needs during the day. It doesn't appear to be slowing either so we may need to re-evaluate finding a school or an option for him. We have been talking about it for a while and we will see.

I am pretty sure I mentioned that we went to the Neuro Surgeon to get a referral to the spinal defect clinic in October. We finally went to the clinic and it went really well. The only real problem that I had with it is that all the people we saw that day required follow up appointments so I have to go to their offices for whatever anyway. I suppose it's better than two in-office appointments but this has been a bit crazy.

Here's all of the most recent appointment updates.

Urology
My impression of this doctor was meh. I didn't love him. he just walked in the door and told me I needed to start giving her a medicine to relax her bladder walls and start cathing her every four hours. I was like "back the truck up!" Then he slowed down a bit and did some explaining but sheesh... We have been cathing Dylan 3 times a day but because her diaper is wet in between the cathing it means that there is pressure which could be bad for her kidneys. I guess we assumed she could pee if she wanted to but just not go all the way? Anyway... bad. Uneven bladder wall at her last bladder study? Bad. Basically we need to relieve the pressure before it builds up and causes problems for her kidneys.

To be clear, there was no reflux before... but he is just super cautious about protecting the kidneys on going.

The medicine that we have added for her apparently makes the walls relax and she shouldn't really go until we cath her, so dry diapers in between cathing. But we had to up the amount of times we cathed her. For now it's just about four times a day but I don't know if I am supposed to be waking her up at night for their recommended four hours or whatever.

We have to follow up with them in their office next week. We will have a bladder study on that day as well. I don't know if the follow up was with the same doctor I saw at the clinic but they called me back and said there was a conflict and can I see the NP and I said YES! I like NP's better than doctor's anyway. Don't tell the doctors that. All the knowledge with less ego!

Social Worker
This lady was nice but talk about an information over load. She kept handing me all kinds of papers and information about support groups, kids activities, camps, disability services, on and on. I left with a huge envelope of papers that I've yet to wrap my brain around.

Family Doctor
I can't remember what this guy's title actually was but it was a crazy time. I mean... he basically walked in and said "Forget about Dylan, she has enough people worrying about her.... how are you?" And it ended up being some sort of very weird counseling session. I liked him and he had some great information but, odd, not at ALL what I was expecting, that's for sure!

He told me that I wouldn't want to live with my parents all my life and they wouldn't want me to, so there's a possibility that Dylan might (and should) live somewhere else when we are old and we can't take care of her any more. Which frankly sucks. when I told Matthew he said "False!" (basically) and that we would have someone come live with us before she went to live somewhere else. Sadz.

He told me that each parent needs to be spending 15 minutes of one on one time with each of the kids every week. He said it shouldn't be planned because then they get embarrassed and won't talk, but it has to be planned or it won't happen. Which was really cute. He said people try to go on larger trips once a year and that's not going to cut it. "You don't build a solid wall with large rocks, you build it with lots of little rocks" or something much more eloquent when he said it.

He also said that Matthew and I need to go out on dates. Like a lot. Wayyyy more than we do (we don't). He said something along the lines of looking at how much we love our kids, and we didn't even chose them, but there is also person that we actually CHOSE to be with and that relationship needs fostering. He said we have to leave the house and it has to be a minimum of two hours and that we can't talk about kids the entire time. He started spouting off facts about how much water Orlando is trying to take from the St. Johns river just to water golf courses and how the military could have prevented ISIS by just doing one thing, and one other very interesting one that I actually wish I could remember. His point? There is a LOT to talk about outside of kids, find those things.

I wish I could remember more of what he said. He was a good guy. Been a ped for 35 years and started in the military. I am kind of scared if him.

Orthopedics
Well this appointment was really interesting. So in January Dylan had the hemiepiphesiodesis to get her legs straightened out in the back.  She stopped walking because of the surgery and the bend is actually worse. These guys basically gave me the impression that they wouldn't have done this surgery for this, they would have taken a different route. Wahhhhh! Basically the angle is so bad that she would have to grow A LOT to make up for the bend and for the surgery to make sense so it's likely we did it for no reason. :(

They wanted me to follow up in the office to get x-rays to make sure the screws are still in place and that her femurs are growing at the same rate.

We went to that follow up appointment on Friday and it took FOREVER. The doctor was running late but Dylan was actually being very cute and fun so it is what it is.

Have you seen the commercial where the xray room is all white and they can change the color of the room and projection on the wall depending on what the kid likes? Yea, they had that. So when we went in it had soothing music and it was cycling colors of blues and green, the whole room... the room was blue... and on the wall was the ocean, like you were under water and swimming with the turtles. FANCY. I gave them a heads up and they had some Katy Perry happening which was super helpful until they tried to turn it down and stopped it and Dylan realized we were doing something not terribly fun.

The xrays came back and everything on them looked good. I wanted to take a picture of them so they just printed them for me which was so nice. The doctor told me about some other options, botox, cutting some muscles, even cutting the bone, but that we would see how things progressed with PT for two months and then follow up and see what we need to do. If it doesn't get better though... bad stuff coming.

The doctor seemed quite intent on making sure Dylan walks again (as does pretty much everyone here that knew she once walked and now doesn't...). She talked about braces that go past the knee for support when she's walking and some other things that I can't even think about. I am hoping that the therapy helps. I follow up with them again in February.

They have prosthetic guy in their office "Bob" and he was so nice I really liked him. I don't know his nationality, very dark skin, an accent, I should have asked. I was telling him about her walking and why we like the braces with the carbon fiber ankle and said her "gait was..." and he said "messed up a little bit." and started laughing and then looked at Dylan and said "mom said that! I didn't!" Though her braces still fit her fine now (and we got them a year ago... hello slow grower) she has been OBSESSED with the velcro on them and he fixed them up a bit. I will talk to him again in February.

Awesome people in the Orthopedics office. I loved all the people I saw at the spinal defect clinic and everyone I saw at the appointment. From the desk peeps to the nurses, everyone passes out their card (that I lose), their emails and their numbers in case I need anything. Crazy helpful.

Physiatrist
Do you know what this is? I didn't know... I am not sure if I still do after we have seen one. And now I have actually seen her twice. Don't tell her that though, she was very nice and she knows Mike because she worked in Salt Lake for a while. I stealthily took a picture of her and sent it to him and was like "this lady know you."

Anyway, apparently this gal coordinates all of the therapy and equipment. We need her.

Before we left Utah we tried to get a stander for Dylan and the company who ordered it got the decline letter and dropped the ball. By the time we knew it was declined we were headed off out of state, with no established care, and would have to be set back. The Physiatrist did the referral for that stander as well as a bath chair because Dylan is too long to lift over the tub these days and it's only going to get worse.

She referred us to PT and OT too. She briefly talked about in house intense therapy... but I blew that off for now.

We have been to both of those follow up appointments. PT and OT are together (I think?) and we did the evaluation this week. Dylan was in NO MOOD to be trifled with. The PT put her in this walker thing that had her suspended from the top in this harness. Dylan complained, loudly, but when the gal pushed it back Dylan did one foot in front of the other, even though she wasn't supporting her weight well. She did it forward and backward a couple times and saw stuff she was pleased with. That's good. Her recommendation is to do therapy twice a week. I set up appointments, before Thanksgiving was tricky, but after... Dylan will be going to PT twice a week. More than ever.

Both the Physiatrist and the PT mentioned knee immobilizers. The sustained added stretch over-night is supposedly the best thing ever. I can't imagine putting her in these things all night and having her be happy, but both of these gals say they are willing to put it off but it's very possible that we will need to do that if she's not getting more flexible after a few months of therapy.

We did the equipment appointment too. Apparently in the state of Florida insurances require that the therapists have ruled out the less expensive options by actually putting the person in the equipment. That's why we got the origional decline. So they take you in a room with all kinds of everything equipment related and find the best fitting thing you are looking for and submit all the required stuff. She said she didn't expect a decline but they automatically appeal if it is declined so if we get a letter ignore it and if I ever need to find out the status of her equipment I can call her.

I am excited for the stander because then we can do it at home. Mike said if you only do the stander once a day for a stretch you might as well not put her in it. You have to do it multiple times a day for brief periods of time. The report from school is that she loves the stander because it puts her at eye level with the kids. Awesome. She loved walking so this doesn't surprise me other than she's in a contraption that makes it so she can't move... okay, so it surprises me a little.

With that we went back to the Physiatrist She basically wrote down everything we did so far. She also wrote a prescription to have Dylan in the stander at school for an hour a day, broken up... which was nice. As is it was just 15 minutes twice a week. She really wants to bump it up for the stretch which is cool. I gave that to Dylan's teacher. They want her walking just as badly as I do so I am sure they will work with her.

GI
This doctor was fine but eh... I haven't really done anything we talked about. At the risk of TMI, she suggested adding Miralax to Dylan's diet with the Senna and using a glycerin suppository every night for a clean out. You can see why I have't done it can't you?

Medically Complex Children's Pediatrician
No longer at the spinal defects clinic but as a referral from it, we went to a new pediatrician also down town in the big tall buildings. I didn't know what to think about it but I was willing to give it a shot. We went this last week and I met the doctor, the nurse and another social worker (another!). The appointment went well, the doctor was really nice, he had a thick accent and I am terrible with accents but I think I managed okay. This practice has more experience dealing with the more needy kids than any other pediatrician we have ever had. So Dylan will switch to this Pediatrician where the other kids will stay with the one I had set up for them.

We started talking about Dylan's diet and how much she eats and how do I know when she's hungry or to change the amount. I explained how and he asked me if I have ever seen a nutritionist. I was honest (probably too honest) and told him I have seen a few and I have never liked them. He asked why and I explained that all the nutritionists I have ever seen try to over-engineer their diet. Plus, we didn't mesh well, but I didn't say that. All you have to do is look at Dylan and you can see that she's doing really well, she is getting enough food, not too much and everything is going great. I have mad Dylan skills, don't question me! He recommended theirs, I told him I would agree to one time... haha. he told me I wouldn't have to go frequently and I told him that's what they all say and here I was with four appointments in one week!

Also at this appointment we addressed out home heath care issues. Since we have been here we have used Apria for medical supplies because I didn't know where to go and the doctor didn't know (because she's not used to these kids and GI would usually do it) so I found Apria which is a national company. They have been HORRIBLE. Their billing is terrible, they kept charging my card and over-billing so I finally removed my Amex because I was tired of calling and having them credit back just to bill it again. They charge over $5,000 a month for her supplies (for reference IMC charged $1800) and we have weird insurance and after our deductible we still pay 10% so we have to pay $500 a month for food for her. That's lots. The nurse at this clinic said thy don't have any kids using Apria and are going to call Apria and get the info on what she gets and change us over to a local company, they have two to chose from. What?! AMAZING. If I could figure out just that I would consider this appointment a success!

She also got a flu shot which I hadn't had time to do so yay! Also a win for the day.

This office will now be her primary care doctor and it's 30 minutes a day but guess what? They have s 24 hour number and they will attempt to diagnose over the phone and call in scripts, even antibiotics without an office visit. Also AMAZING. I love a doctors office that trusts it's parents!

Then it was the social workers turn, she mentioned the huge waiver paper work packet that the other social worker gave me. Egads, I will have to look at that at some point. The waiting list is LONG, I really should get on it.

She also asked if Dylan has ever been granted a wish. She hasn't, we haven't ever pursued it though because we didn't know what she would actually enjoy and also we can afford to go on a trip if we wanted to and some families can't. But... after seeing Dylan at Disney I have come around. And honestly, we can't give her and the other kids what a wish would. She said all the kids in that particular clinic are qualified and she will start the paper work for the referral. I have been all sort of emotional about it ever since we talked.


The appointments that we have coming up are the Nutritionist and Neurology... and I think something else that he said there was a referral out there for but I don't recall what it is... I will know when they call me to make the appointment I suppose. And then all the PT appointments.

Over all I have really liked the care that we have gotten here. I love that we have new eyes on her. I think because we've had the same specialist for 9 years they have kind of let her slide a little. Not intentionally, she's just easy. So that part has been great.

Annnnnd I'm spent!

Dylan was so patient at the long ortho appointment. We had a lot of fun while we waited. She didn't love the paper gowns though... but I held her through it which was fun for me. :) 

Check out these babies with prosthetic legs! 

Hurricane Matthew

We survived a hurricane. That's a BIG DEAL. Storm of the century!

As far as hurricane's go Jacksonville is actually pretty well located. Usually any big storms that are headed our direction tend to fizzle out or turn because of that, East wind? What's it called? Anyway.... they rarely get hit very hard with anything but a tropical storm but it's totally possible, anything is possible! :)

We happen to be about 20 miles inland and away from any major water ways. Oddly enough, when we were looking at houses we didn't consider ANY of this. I mean, there is a VERY clear evacuation map, it goes A-E-ish with A being the closes to waterways. As the storm worsens, the letter that are recommended to evacuate go up. For this storm is was A and B that were recommended to get out of dodge. We aren't even on the map, there's kind of a sweet spot and we happen to be in it. That of course, is only for the flooding and wind is a huge factor that is more wide reaching. Mental note, check the flood maps when ever moving!

Matthew really wanted house on the water with a dock. They are amazing, pricey, but amazing... but his commute would have been way longer and I didn't love the idea. Even more happy about that now!

Anyway, this one was headed right for us, it was going to be awful. They said we would be out of power for a minimum of four days if our power was effected, and that was almost a guarantee. I commenced the ice cream eating. Stat. You know, just in case.

We had a couple loaves of bread, plenty of foods that were bad enough for you to last for several days. We had six cases of water already (Six! Why do we have six cases of water?!). Greyson and I put a bunch of water bottles in the freezer, we had plenty of room since we haven't built up the freezer stash yet.

We were ready!

Then I got a phone call from our Sister Missionaries in our Branch. The sister missionaries in At. Augustine got evacuated up to these sister's apartment and then they got the call that they were actually too close to the river and they were being evacuated. We had four amazing girls who needed somewhere to spend the night for a few days. We were fortunate to have a last name that starts with "A" so we were one of the first calls! And well, what the heck, let's do this!

We ran over to get some air mattresses from someone else and then we set up the two spare rooms upstairs ("Jessica's room" and the exercise room). It worked out really well, the girls had their own space.

My kids LOVED it. They loved them! Over all I think it really was an amazing blessing to have those girls come stay with us but but the boys LOVED having people to talk to and play with! Those girls really did a lot for my own personal experience with missionaries. It was so sad to see them pack up and go when they left but it was good that all of their apartments were safe.

While they were here they helped us sort Legos (on our never-ending quest to reassemble Lego sets), organize the game closet and cut out Halloween decorations. They are not used to sitting around and can't watch TV so we put them to work, errrr service! Along with having to listen to Asher's terrible jokes and draw pictures and play "extreme tic-tac-toe" which one of them taught Ian.

Asher's best joke "Why does the piggie go to the store?" then "To get some beans!!!" (Laughs) "... only he didn't need beans because he already had some!" (laughs hysterically.)

While they were staying with us I took some pictures and sent them by text back to their families. I had no idea what they were hearing from the mission leaders but I know if it were my child out there I would want to know what's up! A few of them text back that they were kept informed and were very well aware of what's going on but they were happy to see their girls smiling and doing well which was nice.

We buckled in for the storm - at one point we had the pool draining as quickly as the water was coming down... for hours... It was pretty scary outside so I just pulled all the blinds and left them closed and we played in our own little world for a while. I wasn't ever really nervous or scared and neither were the kids.

At the last minute, right before us, the hurricane actually stopped following the coast line and continued to go north which actually gave it a little bit of space between us. This is a crazy good thing, because if it go any closer it would have been even worse on into land where we are.

Disney has ever only closed up shop three previous times in history... twice for hurricanes. This was the fourth time.

We didn't even lose power. 

Some of the neighborhood lost some trees and branches but over all I am not aware of any major issues around us. 

The coastal areas and St. Augustine it's a bit different. A lot of houses along the beach lost their bottom floors and hd the back of the houses pushed through the garages in the front of the house. There is a big debate about "sea walls" to protect the homes right now. But hey, you build on a beach... I think you know the risks, as scary and as bad as they may be. The environmentalist are opposed to the wall, some of them even live on the beach. Anyway, I find it interesting because they have fought for years to make it so the general public can't access the beaches behind the homes. You can't get there unless you park below and walk up so it's basically their own private beaches and they want the city to supplement the cost of the wall. All these things I never thought about before! 

The missionaries were so excited to be able to go out and do service for people. The Mormon's Helping Hands has a base out of our church and they got shipments of household goods, food, chainsaws, gloves and all kinds of things. The girls helped unload trucks and have moved on from there but I need to talk to them and see what they have been doing. Because our church is a "home base" they only had church services for the volunteers before they went on their way to clean up. The plan is to resume church services this coming weekend and the home bases are moving up north now to some of the areas hit harder. 

So, got that huge storm out of the way... Hopefully we won't have to deal with another one!

I am telling people it's an "art installment" so they have full warning when they remain up the rest of the year. What else and I going to hang on the wall?

Sister Gibb, Sister Brian, Sister Colson and Asher's favorite Sister Pennock.
Boy did he have stars in his eyes for that girl!