Technical Difficulties

Sorry about the delay, again. Our oldest (and my favorite) laptop finally succumbed to the virus', and our newest (and the one I almost loathe) had been stepped on, so it's almost impossible to use. Luckily, I can pull some MacGyver tricks and use it. It just drives my slightly batty.

There's been a lot in the past few weeks. We took another trip to Philadelphia. It was just a follow up, to be sure all our plans for surgery are still on track. This appointment, although short, was important. We had a year break, so the doc wanted to be sure the surgery was still needed. A little refresher on the surgery. It will be to nick the tendons on top of the hip to help release those contractions, putting her in a better position to stand. The end result of the appointment was mediocre. The doc is pleased with her progress, and we will hopefully return July/August for surgery. We'll stay for a week; do some therapy and get her fitted for new braces before the surgery, have the surgery, then come home. Then return in a month to get the new braces and her casts off. All in all, it was a nice, smooth trip.

She also had a few other appointments with doctors here at our local Shriner's. Anabelle has a follow up with an ENT for her torticollis. He also is pleased with her progress, and said she should be able to avoid surgery. Which is great because I didn't even know that was in the cards! It's still very noticeable, especially when she is tired. The other appointment was a follow up with her upper extremities ortho. We talked about possibly doing dorsal carpal wedge osteotomy on one of her wrists. It's been decided after talking to wait and see how she is mobile after her legs are taken care of. It may be better for her to leave her wrists as is if she does use a wheelchair later. It'd be easier for her to transfer with flexed (bent) wrists rather than wrists stuck in extension (out straight). We plan to follow up in another 6 months. She also had a photo shoot so we could collaborate with the upper doc in Philly and see what he thinks. Luckily Ana has an amazing occupational therapist who accompanied us to this appointment. It helped to have someone there who spoke the same language as the doctor, and convey what we really wanted to. And just like the two doctors before, this one was just as pleased with Miss Bear's progress. We also got to show off Ana's WREX, although her doc didn't seemed to impressed. She didn't even ask for a demo. It's ok, Ana's still getting use to it.

Feeding therapy has also been in the picture lately. Not sure if I mentioned it before. Her therapist is happy with how in love with food this little one is. We are still under the directive to not even attempt to replace nutrition in any way with oral feeding, but with how much this girl loves her food, it's hard not to think she's getting tons of nutrition out of it. Looking back, she really has come so far with her breathing and eating. It's amazing to see.

Until the next time I feel like pretending to be McGyver...

With love,
The Polks

Helllo 2014!

Hey there! It's me, Kayla. I know, it's been a while. If I thought we were a busy family before... Let me take a moment and catch you up!

Miss Anabelle just turned TWO! I still can't believe it. She's such a big kid now. She talks and understands more than I am ready for. This year she was able to eat her cake! Although, she wasn't interested in the cake as much as she devoured the icing. 

                  



I will (mostly out of need) to keep it brief. I find myself starting an update, getting distracted, forgetting what I have already wrote, then just start over. I've done this about 8 times now...

In brief... Anabelle is eating orally now! She's still working on certain textures, but the desire is there. She loves eating. As apparent in the photo above. She does still eat through her feeding tube, which is a G-tube now. We have switched from a formula diet to a blended foods diet. At first, we were really crazy and counted calories and milliliters and charted and went crazy. Then meet with a nutritionist. She advised us to add protein and just put whatever we feed the older girls into a blend, and wa la. We have a 2 week follow up in 6 days. She's already gained 2 pounds. In just over a week. After 8 months of nothing... It's pretty spectacular. 

She's a scooting pro now. At times she does get frustrated because her sisters can outrun her. We are practicing with a power wheelchair in physical therapy, and she's doing alright. She's also practicing with a gait trainer. It's a tad too big for her still, so the focus is to get her comfortable in it.

Also.. Ana is now the proud owner of an exoskeleton. Her's is for her arms. You may have see an article circulating around.. and it's similar to that. She is also a work in progress with using this. Tonight she actually scooted over to it and asked for her arms. Then got distracted and changed her mind to shoes. 

Speaking of arms.. I recently spoke with Anabelle's uppers doctor. We talked about surgery. The surgery is called a dorsal carpal wedge osteotomy. She would also a procedure to help take Ana's thumb out of her palm a little. We have a follow up next month, so I'll post more then. 

Oh, and boy does this kid have attitude. She is very vocal. Sometimes she may not being saying words necessarily, but she will make sure you know how she is feeling. I feel she is getting frustrated with not being able to always communicate her needs, or do it herself, so she becomes Monster Ana. She actually had her first time out last night because of it. I mean... you think she's so small and cute and nice... just wait until you are in the path of something she wants. Let's put it like this, she has no in-between. It's high or low. Happy or Freak Out. The terrible twos have hit the Polk house yet again. So, it's something we're working on. 

Amelia and Allison are really showing more interest in her. Before their interest primarily laid in helping with the baby, not so much in the baby itself. Don't get me wrong, they still cuddled and loved her. But now they play with her. They are including her and realizing knows what's going on now. All of this is just age stuff. And she's finally caught up to where she's realizing (to a certain point) what they are playing, and plays along. It's wonderful to see the bonds they are creating. 


And that's a 'brief' update. I will post again on Sunday. If I don't, please hold me accountable! I am so easily distracted, it's not even funny. 

With love, 
The Polks

Tooth fairy, surgery, friends and more!

Let's see.. where to start.

Last post I mentioned we were moving. Well, we've moved! We love being closer to family, and not to mention back to a slower paced town. It helps reminds us to stop and smell the roses while we are running around like chickens with our heads cut off.

Also, Ana finally had her procedures/surgery that we were waiting over 6 months for. About a month ago she went in and they put Botox into a couple muscles in her neck, removed her adenoids and did a bronchoscopy. There was a different doctor doing each part. The Botox doctor was first and quickest. Then the bronch doctor. He came and talked to us after he was done. He said that everything looks great. That even in deep sleep she protects her airway. And there are no missing pieces, and it's all in working order. So the issue is she just needs to learn to coordinate closing her airway while swallowing. Then the adenoids doc came in a few minutes later. Kyle had stepped out of the waiting room for a minute. The doc came in holding a specimen jar. Wait. Let me digress.

For this big day, we had to get to the hospital to sign in and wait around very early, about 6:30. For the Polks, that's awfully early. So while we were waiting, we were playing around with Ana. Kyle was holding her upside down and we noticed how her top tooth is finally coming in!

 

 

Who knew that fuzzy, upside down, can't even really see it picture would be the only one we'd get with that tooth inside her mouth.

 

Let's continue. The adenoid doc came in, holding a specimen jar. I thought maybe he was going to show me how massive her adenoids were and that's why she would get stuffy at night and sick so easily. But he looked as if was wearing sandbags around his neck. Heavy. Then I got a little panicked. Just as we were walking back, Kyle walked in. We followed the doctor from the waiting room back to the holding room. He paused. I feel as if I blurted out "Is she ok!?". He calmed my fears, letting me know she did great, but is down a tooth. He accidently knocked out that previously mentioned tooth. Then handed over the specimen jar. It held her tooth. Not adenoids. He explained how he had the gag(not sure what that is) in position to hold her mouth open, and it tipped and pulled her tooth out. It wasn't a clean pull either. A little flab of gum got ripped and pulled too.

 

 

It's a small thing. She's fine. She recovered wonderfully. Although those first few hours were horrible because she wasn't feel good, and her only soother AKA pacifier couldn't be used because of the tooth incident. But she woke up the next day with a big toothless smile on her face.

Even though it's small and she's fine, Kyle and I feel slightly robbed. It's just another unnecessary baby thing taken away. Her first haircut was in the NICU. And it was the whole side of her head, which wasn't even used. And now her first tooth was taken before it ever really came in. Ok, just had to throw myself a small pity party:)

 

But in closing, the doctor feels horrible! Right after I said it was ok, things happen. And he said "No. It's unacceptable." What do I do with that!?  Things do happen, we understand. As long as she is doing ok, we're ok. He checked on her in recovery (which is rare), called me later that night, and continued to apologize at the follow up.

 

It's been pretty quite around here. Just trying to get things in order, line up appointments and changing things to our new address. Which is proving more difficult than thought with some of her services. We also decided to nix the in home nurse for now. So Kyle is being super dad and juggling the home and appointments. We're also still trying to get her to tolerate things through her G tube. Remember, she now has a GJ tube, so there is a part for each. She's still getting a majority of formula through the J. We're also going to be introducing some blended foods through her G too. I'm just still nervous, but I need to just go for it! I've heard wonderful things about blended diets and how people flourish on them. I'll keep you updated on how it goes.

 

We also just went to our first AMC annual conference! It was amazing. Some kids didn't really want to play with Ana since she's not mobile, and I think it motivated her. She was able to see how these other kids scooted around, roll around, wheel around, etc. And since they didn't just stay by her and play with her like her sisters do, I think it pushed her to get mobile. She's a pro and pivoting, and she's starting to slowly scoot! I need to edit the video and post it.  I'll have another blog about how wonderful it was, in detail.

 

She also is very interested in food. We're scheduling another swallow study (and sleep study), then moving forward from there towards orally eating.

 

It's been a crazy few months. I'm promising myself to keep the blog more updated. I really do apologize!

 

With love,

The Polks

Quick update

I realized that I haven't updated as much as I should! In over a month actually... I apologize..

What's new with Miss Anabear?

Well, she's learning to use her arms to the best way she can. She will swing her arms and knock things over, or use her mouth.
She's still working on scooting. It's kind of hit a wall, so we're talking with her therapists about getting something to help.
She still refuses to say 'mama'. Even though she tries. She looks intensely at our mouths as we say it and tries.

When we got home from our last Philly trip we had to change her tube. I think I updated about that. NIGHTMARE! Then about a week ago the tube broke again. Now, Anabelle has/had a straight J tube. And the size she had only came in a tube that had an external portion, 'high-profile'. Like the picture below. Except (obviously) that's not Ana, it's a photo off of the internet. Hopefully I don't get in trouble because of it. :)

So when it broke for the second time in roughly a month, I was done with it! We took her to the ER, because it was after hours. I had the ER call her GI doctor, because I wasn't able to get a hold of her. Finally we talk, and come up with a plan. We switched her to a low-profile GJ tube. The picture below isn't wonderful. I'm not sure why there is an apple in it.. But I hope it makes sense. The very top (where the apple is) is what lays against her belly. Then the balloon (the bottom of the apple) is what is inside her belly, along with the rest of the tubing. That way the only part sticking out is flat. It's wonderful. And since the main issues with the straight J-tube are that they broke on the outside, I am hoping this is much better. Plus, we get to see if she will tolerate food through the G-tube again. We haven't tried it yet, because she's been sick, but it's an option!



We meet with her GI last week. She isn't gaining enough weight. She has a registered dietitian (RD) that comes in before the doc, and we discuss options. It's nice to have that available! She said she'd like Ana to be gaining around 15 grams a day, and she's around 2.5. So she's plateaued. Which is difficult because she doesn't tolerate a high volume of food. And in a larger picture it's frusterating because I'd love her to be on a blended diet (BD). Which is literally food, blended. Then we push it through a syringe to feed her, rather then being on a pump. But we can't BD feed her through her J tube, per her RD. And I'm nervous about trying to feed her again through her G. So we are waiting until she is better to try it out and see if we can't get her on a BD through her G. That way we can add more calories, she won't be hooked up all the time, she's getting REAL food.. just good all around.

Let's see, what else. We are STILL trying to coordinate a procedure. Well. Procedure/surgery now. We're still waiting for them to get their stuff together and do a bronchoscopy and the Botox injection in her neck. We had a meeting with her ENT doc, and he said he agrees that removing her adenoids would be beneficial. So now we're adding that on to it. It's a lot, but it's not the easiest for her to be put under multiple times.. I feel bad for doing so much to her at once, but the risks are less if it's once rather then three separate times. Plus, she gets put under so much already, why not try and combine? But we've been waiting for just the bronch since around December.. so we'll see. I've expressed my frustrations plenty, I just hope they understand.

After we do the all of that, next step depends on the results. If her Pulmonologist thinks that we can move forward with another swallow study, we will. If not, then we discuss. I talked with her ENT, and if the reason she aspirates is other than her just being underdeveloped, then it'd be surgical. And if it's surgical, most likely it's be very invasive surgery. We're hoping not go have to even discuss it further than that. We're hoping her muscles are just immature and need to develop more.

But boy oh boy does that girl love to taste food! A few nights back we had a lazy pizza dinner night. And Alli was sitting on the couch next to Ana, and Ana leaned over and started to suck on her pizza! I was also on the couch, so I let her taste the sauce, and she was in love! She was very upset with me when I had to take it away. She's starting to bite food now. It's amazing, yes, but terrifying for me. I am scared she is going to take a bit and aspirate a whole bit of actual food. AH! I don't think her doctor would be pleased with me. I don't even know really what would happen, I hope she wouldn't choke. But ugh. It's wonderful she understands that's what you do, but terrifying.

Other then those big things, the only other thing is that we are moving! We're moving closer to family, so it will be nice. It's where Kyle and I grew up, so we're happy we get to raise our girls there too. Only downside is we have to switch therapists. Which is a huge downside. Once that I didn't realize until after we had everything set up to move. Not only do we have to start over, but I'm nervous it will take Ana a long time (again) to get use to new people. People that move her and make her work.. She's one determined little girl. If she doesn't want to do something, rarely are you going to get her to do it.

Thanks again for keeping in the loop with Anabear! And the support and love! It's amazing to look back on the past year plus and see how far our little fighter has come! Like I always say, we wouldn't be here if it wasn't for you :)

With love,

The Polks



Philly Part 2

WE ARE HOME! 

Well, we've been home since Saturday technically...


Let me pick up from where I left off last.

On Thursday we had more therapy. It was actually very beneficial because we were able to move the time so Ana wasn't so exhausted from no naps. She was a bit tired still, but actually worked! We focused on rolling and scooting. Anabelle really liked to roll. We tried to get her into a prone position when she would roll on to her belly, she cried. Prone means she is up putting weight onto her forearms, like in an army crawl position. I think it might be to much of a stretch on the muscles in her shoulder/arm pit area since those muscles are really tight. There was also a wedge we used to help her learn to scoot. They has a smaller wedge that basically looked like a little slide, Ana sized. It has an inch lip on each side, and it was about 18 inches from top to bottom of the slide. We put Ana at the top, and at first helped her scoot down to show her how to do it. She was fine if we were doing it for her. But she got the idea, and did it solo! However... it scared her, and she cried. She's not use to moving on her own, so it was scary not to have our hands on her while she moved,  she didn't feel secure. But she is getting the idea, and I think she will progress quickly!

Friday: We had PT first. It was another good day! More of the same, but she is getting the idea, and I think it will only take a few months until she is all over the place and we will have to really baby proof again!

Saturday was our flight home. It was an early flight, especially since we had to return a car and was worried about it being spring break and the cut backs to TSA. We had a flight from Philly to Chicago, then Chicago home. With a 3 hour layover in Chicago. Unfortunately plans changed. On the flight to Chicago Anabelle's feeding tube broke. Now, she has a straight J tube. J is for Jejunum. Jejunum is the first part of your small intestine. The more popular tube is a G tube, and that goes directly into your stomach. Ana's tube bypass the stomach and goes directly to the jejunum. Her tube has to be replaced in the hospital under anesthesia. We aren't even give a replacement just in case we run into this issue. Also, because of the size she has, the part that comes out of her stomach hangs out about 6 inches or so. The tube broke in that part. I couldn't clamp it, so it just kept leaking. I had no choice but to stop her food. I dried it all up, and used some tape to try to stop it. So we finally get to Chicago. I learn that our plane is delayed by two hours. So 3 hour layover is now a 5 hour layover. This means Ana won't be eating this whole time, and it means getting her to the ER will take even longer. I tried calling doctors to get them to help expedite our process. Nope. Ana couldn't sleep well. She doesn't feel hunger, but her sugars and whatnot drop. You know that feeling when you haven't eaten for awhile, and you feel kind of sick? Yep, that's it. Then the plane was delayed another hour. At this point had been up traveling for 11 hours. Then our plane got in, and we had about a 4 1/2 hr plane ride home. Make that 11 hours 15 1/2. We land, go to get our bags, and learn because of the delays, they misplaced one bag. So I file a baggage claim. Then finally off the hospital!

We have to go to the ER, see if the department who replaces tubes will do it that night, and of course they won't. They have to admit Ana since by this point it has been over 24 hours since she's had anything, and she's dehydrated and her numbers have dropped. I usually have a really good experience with the nurses and doctors.. However this nurse rubbed me the wrong way. Maybe it was the lack of sleep and food on my end. Long story short, we finally get admitted, get her in bed, get her some sugar and electrolytes, sulfate, etc.. Which I learned the next morning they did incorrectly... And she starts to do better, but still exhausted. Get her a new tube, finally, and get out of dodge.

We got home Sunday evening. I am not sure how mom's travel solo for this trip repeatedly. I don't think I can do it again. I am still trying to recoup from this trip. Luckily Ana is able to nap:) However today (Tuesday) she is acting like her tube is in the wrong place. We can wait till morning to check, but hopefully it's fine.

Oh, but on top of this, Anabelle has been battling pink eye and a cold. She is one little trooper. Makes me feel like a big wimp sometimes :)


Hopefully that is the end to our excitement for awhile.

With love,
The Polks

Philly!

So it's been a while, and I have lots to catch up on. I am very unorganized and the 'every Sunday post' thing isn't working as well as planned. I apologize. 


Last weekend was Anabelle's birthday! YAY! It was a blast. In summary, we spend quality time with quality people. Anabelle was a tad fussy since she decided to skip nap time. But she did enjoy walking around the arcade with the lights and noises! 


This week we are in Philadelphia. Dad and two big sisters stayed back home so the girls could stay in school, and because having all 5 of us here would be complete chaos. 

To recap thus far:

Monday: She went to clinic. Followed up with uppers and lowers. Uppers said he likes the range she has gained. Still just wants to watch to see how she grows and develops before thinking about any kind of surgery. I showed him the night splints we had made at home, and he is having the O/T here makes some others. The ones we had were very large and bulky. And honestly we never used them because of this. Lowers said he is also pleased. He is happy her ankles have stayed in place, and how much range she has gained in her knees and legs. One knee bends about 60 degrees while he other is about 70. Which is really good considering a year ago they were about hyper-extended about 10 degrees. We had to lengthen her KAFO's because she's grown a few inches! Very exciting! Also, he doesn't think she will need an osteotomy. An osteotomy is an invasive surgery where they go in, cut the bone (depending on what type of osteotomy, in Ana's case, it'd be her femur), re-position it in a better place, then pin it up, sew them up, and cast them for weeks. Instead of doing that, he thinks he can correct her legs by a simple soft tissue release. For Ana, since she was born with her toes by her ears, the tissues/joints in the front hip area, is very tight. This makes it impossible for her legs to come down and lay flat. It seems like a fairly simple surgery, in and out. She'd be casted for 4 weeks, with a bar in between her legs to keep them out. Now sure why that is, forgot to ask. But once that is done, that means she will be able to stand up straight. Which means we can really focus on walking!

She also had PT this day. In PT she learned quickly how to manipulate the therapist to get her sympathy. We discussed our goals for the week. Mine is mobility. She sees her sisters running around, and I can see she wants to be involved. I just don't know how to get her to be.. So we came up with the solution of scooting, or rocking.. Just moving her legs and bottom around so she can get around. Anabelle isn't totally on board yet with this idea. 

Tuesday: In the morning we meet with OT. They made her some wrist splits. These splits are night splits. Made of a lighter/thinner material. They stretch her wrist into extension (out straight), her thumbs out into extension, and her fingers into extension while flexing her knuckles. Lots of stretches from one split. Then we had a few hours before PT. And kind of slept on and off. Not very well though. Then PT. She didn't like it. But she worked. A little. She showed off her kicking skills at least :)

Wednesday: This morning was OT again. They made some adjustments to the splits, and put them on her for about 20 minutes. They didn't have time for a full session... for whatever reason... so elbow splits were not made. Then we had a few hours before PT. I thought Ana would sleep since she was tired......NOPE. She decided to go into zombie mode. Cry. Whine. Anything but sleep. So PT time rolled around, and she was already done. She didn't even want to sit up half the time. I had to take a 5 minute break and walk around with her to calm her down. There were times that she was ok with being there, but still wouldn't work. It was really frustrating. Only because we didn't have her OT scheduled originally, and then they decided they didn't have time. So that means we got very little accomplished today...

The joys of it all. Oh, then we got back to the Ronald McDonald house, and I realized I left my phone charger somewhere. I thought in the cafeteria, but they didn't find it.. So now I get to go on a hunt for a Target to find one. But of course I threw in some laundry before I noticed the missing charger, so I have to wait for that to be done. 

Blah. I wish Target stocked some magical pills that took away sleep deprivation  I'm sure the line would be out the door for those! This whole day light savings/time zone change has really messed my sleep up. I'm a total wimp! 

While the laundry was going, I thought I could catch up on some work.. But it seems like the password I had before I left no longer works for my work email.. and I don't want to drain my phone to call the help desk to fix it before I get a new charger since I use it for GPS... So I'm sorry boss ladies! I am trying to work! Promise! 

But I have meet some great AMC families while here. We had dinner last night together. Unfortunately I am staying at a different Ronald McDonald house, but the drive isn't bad at all. Just over a huge scary terrifying bridge. No big. :)


I will update more later with pictures to boot! 


Thanks again to EVERYONE! We wouldn't be here without everyone doing what they do to help us :) 

With love, 
The Polks

The more you know

With Anabelle's first birthday just days away, I have been looking back on our lives. 

I looked back at a couple blog entries from December 2011. I knew absolutely nothing. I am still learning. However, I know mountains more now then 15 months ago. I didn't know how to correctly spell Gastroschisis, I didn't even know what exactly Arthrogryposis was. I was terrified of what was to come. 

It seemed like eternity for Anabelle to join us. I remember having such mixed emotions. I couldn't wait to hold my baby girl. But no one could tell me how long I might have with her, or what to expect at all. I knew that she was ok while still in my belly, but how would she be outside?! It was terrifying. And then the day came. March 1, 2012. Such a roller coaster day. I was so out of it because of all the lovely pain killers they gave me. I remember when I finally got to see her, and tried to ask, 'How is she doing?', I'm sure it came out as 'Keolnlsdu aslkdnfo uoasdnl'. Or at least that's how it felt by the stares I got. 

Now were just shy of a year later. If you told me we'd be here be a year ago, I'd probably laugh in your face. I didn't even want to think this far into the future. It was because the doctors didn't think that Anabelle was as amazing as she is. I couldn't imagine life without her. 

I won't lie though. It hasn't been all rainbows and unicorns. The beginning was rough. Really rough. Thankfully we have had amazing support. Not only from our family and friends, but from total strangers. We have been blessed to meet tons of other families online who have years of experience. I'm not sure we'd be as strong of a family now if we didn't have this support. It's a group of people who have already been there, done that. They have encouraged us to do what we think is best, as well as offer up some well learned tips. We have only meet a few of the families in person, but I don't feel like they are strangers. With them this road isn't so rough. It's so wonderful to have questions and have tons of people to turn to for advice. 

When I think about how far Anabelle has come, I am overcome with joy. From doctors telling us that she'd never do anything, to today, where she sat for hours and played with her sisters and laughed her head off. But that's a mix of emotions. Doctors don't know everything. And some people think what they say is stone. And to me that is terrifying. Because sometimes they are wrong. Like they were with my wonderful baby. They told me to consider my options. The genetic counselor we were working with during that time push our 'options' on us. During our most fragile time. Just hurts to think that these people can influence families to make these life changing choices and take their wonderful babies away from them. I am so thankful we didn't listen to those doctors. Don't get me wrong, they were nice during our care, but... only after we made them understand our feelings. That this is our baby, and a diagnosis, or lack thereof, doesn't change that. 

Today I tried to do a photo shot of the girls for their birthdays. Spring time in the Polk household is Birthday season! Four out of five members celebrate. Today was primarily for Anabelle's birthday. It is just wonderful to have all of them home, together, healthy and happy (mostly). 

(And yes, we are that family who does matching outfits for pictures)

She is a natural! 

Hanging out upside down! Loves it because it allows her to move her arms :)

Time for all three!

She's not sure about this pose...

And...she's done!

Not even a wardrobe change and her animals could salvage this shot

She was so tired from sitting for so long, she took a nap from about 3 to 6, and then woke up for about an hour, and slept since. I guess a photo shot is a great way to knock her out :) Good thing, because this one didn't turn out as I planned or wanted exactly. Which just means another great night of sleeping for the parents! 

Thanks to everyone for EVERYTHING. Everything has gotten us to this this point, and I am so thankful. 

More to come. 

With love, 

The Polks