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

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

Picturetastic

As promised, here are pictures! 

This is Anabelle's first helmet. They obviously sent the wrong design. 

You can see how sweaty it makes her head.             

   I mistakenly left the camera lens and she had fun kicking it while I tried to take pictures.

This is the toy Kyle made for Ana. Made out of PVC Pipe. Then wrapped in pink polka dot duct tape for a girly touch. She loves this thing. 

We call it her kick stand.

                                        

She can really kick her toys with this thing and enjoy playing independently!

                                      

We finally got the right helmet. It was a little to plain for Amelia and Allison's taste, so they decorated it with their stickers. 

Ana sitting! 

She can do it all alone now. We have to get her into the seating position, but once there, she does great! 

Occasionally she will fall forward, like so. But she can sometimes bring herself back up. Sometimes she falls to the sides. 

                                    

The girls playing with play dough. When Ana gets to touch new things, she usually makes a face like she is disgusted. It took her a while to warm up to play dough...

Ana and a silly face. 

 

My crazies. 

Alli Paige 

(wearing my first crocheted hat)

 Until next time. 

With love, 
The Polk's

Big long words

Our trip to Seattle was well worth it. Dr. Judith Hall is one of the kindest doctors I have meet. Not only does she have a wealth of knowledge to offer up, she sincerely showed that she cared. Not only for the time she was sitting with us, but for Anabelle's future. For the future of our family. She wanted to focus on Anabelle as a person, not just a diagnosis. 

I know that seems like an oxymoron because I went searching for a more definitive diagnosis. But I didn't go searching because I needed to validate anything. But I just wanted to have more information.

But to the juicy parts. 

Dr. Hall believes Anabelle is in the Amyoplasia spectrum. And on the severe side of Amyoplasia. She cannot say definitively, but believes this is correct due to the Gastroschisis along with the AMC. I'm getting ahead of myself. 

The reasons she cannot say it's Amyoplasia 100%:

 - Kids are typically presented with their arms stuck straight and legs bent,  kind of like a pretzel.  

 - Anabelle is opposite of this. Even though no two people are effected exactly the same way, Anabelle is pretty far from the typical Amyoplasia kid. 

 - Anabelle has these long dimples on her forearms and legs. Dimples in AMC are areas that didn't move much at all in utero, causing little to no muscle (and other things) to develop, so the skin basically stays to the bone, making a dimple. Ana has them on her shoulders, elbows, wrists.. All typical places. But Dr. Hall has never seen the ones on the forearms and legs quite as large as Anabelle's. Also, she was puzzled because she has seen kids with dimples on the legs, but shorter ones, and when they do have them, it was caused by the placement of the foot/feet. Meaning the toes were facing up towards the shin. Ana also does not fit that category as her feet were turned out. 

Back to why she thinks Amyoplasia in relations to Gastroschisis. She explained that in every big study anyone's done in Gastroschisis that 3-4% of the participants have Arthrogryposis, and of those with AMC, all are Amyoplasia. 

She also thinks it was all caused in relations with the vascular system. I can't remember exactly what she was meaning (I know, totally dumb of me), so I will be emailing her shortly for a refresher. 

But she cannot say exactly what caused any of it. The AMC or Gastroschisis. But she did say she is running a study of AMC and Gastroschisis/bowel adhesions soon, and will be looking for similarities. 

She also said if she finds anyone else with long dimples like Ana that she will be in touch with us. There is another genetic test they can run, more fine tooth then the two we have already ran. 

She did say that she recommends us returning to our local geneticists when Anabelle is about 16-18 years. 

AND. She said that of course she cannot guarantee anything.. however, in her observations, kids with good hip movement can walk. Anabelle has GREAT hip movement. I know that she isn't so amazing she has a crystal ball or anything... But Ana's uppers (hands/arms) don't function too great, (though she is making great strides!!) so if she can have walking in her pocket, I won't say no to it. No matter what happens she'll be fine, it'd just be nice to have the benefits of lowers.  

We also got the chance to meet other AMC families. It was really fun. There was an adorable 3 year old little boy. At first, very shy, but then he started joking around with me. Just made me miss Amelia and Allison all that more. I'm not sure how we're going to make it in March for a week when we go to Philadelphia. 

Side note: She is interested in food! We have been giving her little taste of it, and now when she sees food she yells at us if we don't give her tastes. By little tastes, I mean we dap our fingers in what we are eating and put it on her tongue. I cannot wait for the bronchoscope to be done with so we can hopefully start feeding her orally. Although, I don't think that will happen anytime soon. When we give her tastes, she is still swallowing the way she was when she was orally eating. Imagine eating air. That's the closest I can come to to describe what it sounds like. As if she is eating and breathing at once. 

Side note #2: So far this month, besides therapy, she has a total of 2 out of the home appointments. TWO! Last summer it was 20. Just shows how much she has improved in the health department. 

Promise, pictures in the next post. :D

With love, 

The Polk's

Pink!

I had a nice long (almost done) update all typed up, couldn't finish it because of life, so I saved instead... And when I get time to come back.. it's vanished. 

I apologize if I don't include everything now.. because time goes on and I just forget things :/ 

Man o man. Have we been a busy family lately. 

The most important update, one I am sure everyone is dying to know about. 

PHILADELPHIA! 

It was perfect! I'll start from the beginning. 

 <---- anabelle="anabelle" happy="happy" s="s" so="so">

We were flying out of SFO (San Francisco), which is about a 2 or so hours drive for us. We decided to drive to Richmond area and take the BART the rest of the way to the airport. All went well! We got there, check in was great. We had a layover in Denver. Oh and we sat next to a lady on the way to Denver that was SUPER sweet. And Ana smiled tons at her! Which is a huge improvement because she went (and sometimes is going) through a phase where she scream/cries at strangers. A little traumatized from doctors and nurses I think. We get to Philly, that went fine (minus the cab driver not knowing the city...) Go to our hotel. All is great. Ana did great sleeping somewhere foreign. 

We decided the next day to go to the hospital early to grab something to eat in the cafeteria before since we were in a hotel. We got to Shriner's about 2 hours before. We filled out all the registration papers and were told to go to clinic. I didn't think that the appointment would be as long as it was, so I think we can just grab something to eat after. Boy was I wrong. 

We got called back to a room early. We answered the same ol' medical history stuff. Waited. Saw Dr. Z (the hand expert). He was very nice! He knows and is willing to coordinate with the hand expert at our local Shriner's, whom we have no qualms with. She is actually helping us with our Miracle Flights paper work. He said that a muscle transfer will probably be unlikely for Ana. For two main reasons. 1) Taking good strong muscles from her legs to move them would only make her legs weaker, which doesn't makes sense, and 2) He needs a good nerve(s) to hook the muscle up to, which doesn't seem like it would happen or be easy with her arms. He did say to keep up the range of motion, and that he thinks some elbow splints would help with bending her elbows more. The more they bend, the bigger the possibility for independence. She might not be able to bring her hands to her face, but if she can get her forearm to a tables edge and use her weight to bend to her hand that's up on the table, then she could eat, brush teeth etc. I really hope that is an ok explanation. 

Then we meet with the PA (physician's assistant). Talked some more. 

Then waited some more. 

Then we meet with Dr. vB (lowers expert). He took measurements. How much she can bend (flex) and straighten (extend) everything; ankles, knees, hips, wrists, elbows, shoulders, head... We talked about different options. Explained what we have done so far to him. Never once did he say 'Let's try to get her knees to bend to at least a sitting position.' We decided serial casting would probably be a flop since she's kind of plateaued. So he thinks that AFO's and KAFO's will be better for her. So he put her in plaster casts until the braces are ready for pick up (1 months time). The AFO's will be for her to wear during the day, the KAFO's will be night time. The KAFO's will have a lock on them. This will allow us to flex her knees at night and lock them, and gradually over time keep flexing. But this also gives us the freedom to remove the braces and give her baths, continue therapy, and paint her toenails! For further down the road.. he likes to do hip surgeries around 1-1 1/2 years old. We didn't talk in too much detail only because we were already approaching the 4+ hour mark. But in short, he recommends doing a surgery that just nicks the tendon on her hip that is keeping her from laying flat. I have no idea what tendon, or if that has a name. He also talked about doing a hip osteotomy. This one is big and scary. And we will need some time to talk about it with him more. 

Oh and he took x-rays! I'm not sure why x-rays weren't taken locally before treatment started. I think we were just so excited to finally be getting ortho treatment that we were in a daze. But after a while we asked and were told they are not needed. Ok, not going to focus on the negative. He took films of Ana's ankles in a few different positions, her knees fully bent (her fully bent), fully extended, and of her hips. We learned that she has oblique talus. To my understanding, her ankle bones are in socket, but not perfectly. And he found it interesting. He thought she had vertical talus. So interesting to me that this was found, and treatment might differ, because of a simple x-ray. Sorry, I got sidetracked again. I mustn't dwell on the faults of previous doctors. And they point a little downwards. Her right foot arches too. Her knees look fine (need to ask about the patella, totally forgot), and her hips still look great and in socket. YAY!

I just have to say. The ENTIRE staff is amazing! I have tons of little stories. One family has a bunch of kids, two AMCer's, were there, and they also have a brand new baby. BRAND new. So while the kids were getting films (I believe..) the check in gal held the baby for the family! The PA helped us get subway info for our way back to the hotel (but we ended up cabbing it due to time). When people entered the room they didn't just sit and stare, they introduced themselves! Explained their role and why they were there! The entire staff offers their help. If I have any questions they make sure I know how to get a hold of them. And when I call/email, they RESPOND! In a timely fashion to top it off! Oh, another big plus... the doctor does the casting himself! And it's a single bed cast room vs. a 6 bed open curtain cast room where you hear the kid next to you screaming! Oh, and they offer you their left over pizza from their pizza party! Which was a life saver since it was after 5 and we hadn't eaten. 

It was so nice meeting other AMC families as well. Seeing their kiddos! We got to chat with a few different moms while waiting to get fitted for braces. 

Ana on the other had was not a happy camper. She was wanting sleep and was done with people touching her. Little did we know she was also coming down with a cold. 

I've heard Dr. vB's casts are painful, so I packed and used Ana's Tylenol with Codeine. 

So our flight home. It was ok.. I felt bad for Ana because she hated her legs being touched, and felt bad for those around us because she was screaming. During our layover in Denver a wonderfully nice lady came up to us. She asked if Ana just had surgery. Oh man, here we go. Explained no, AMC, and what were doing. Luckily Ana was sleeping. Surprise! The lady has a friend with AMC! YAY!! She asked where we were going/coming. Explained that as well. She was floored! Her friend has raved to her about Shriner's Philly, and how great their doctors are. So any adult AMC'er who had a friend in Denver on 11/6, I'd love to get in touch with her again! Very nice lady!!

We get home and Ana is feeling too great. We also had a nurse the day after we get back who was shadowing our regular nurse. But this nurse wanted DETAILS. We don't have everything in writing as most things are a "you try it out and figure out what works at home" kind of thing. Plus we didn't know she was coming, plus we had a doctor appointment. At the doctor appointment Ana spits some brown up. Weird. She has nothing in her stomach, especially nothing brown. The doc says to start an oral med again, but lowers the dose. It has to be oral because it coats the stomach lining, and if it goes through her tube then it won't get to her stomach. So at home I try to give her some. The new dose is .25 ML. 5 ML's equals roughly a teaspoon. 1 ML is about .2 teaspoons. So 0.25 ML is nothing! To us. To Ana it's tons. She chokes, gags, doesn't like it, doesn't know what to do with it. Then she throws up. Big time. And all brown. Off to the ER. I'm not waiting this out. They suspected a bowel obstruction. So they admitted her, to the ICU. Which means constant Pulse ox and monitoring (more wire when holding her, blah). Come to find out I was just giving her too much Tylenol with codeine and she was sick. I was trying to treat the symptoms of the Tylenol with more Tylenol. Mom of the year award goes to me... 

Finally four days later Ana was finally smiling again! And back to herself, thank goodness! 

OH. And we got the MRI results, but haven't had the follow up. So I'll update when we do that in the beginning of December. But nothing huge was found (at least from what I can read...)

We have a follow up sleep study next month too. 

Fun time!! Pictures! 

 Halloween- Tinkerbells!

 

Pooped after getting casts! 

Happy to be home!!

My three babes <3>

Amelia hugging her booked and 'sleeping' in Ana's bouncer :D

Until next time - 

With love, 

The Polks

Just keep swimming

I started out writing this post a few days ago. Then put it off, then  got busy. I think I delay updating because it makes it a little to real sometimes. Sorry. It's easy to go through the motions and not think due to being to distracted by what is currently happening. And our hospital and doctors are very into having us make big decisions. So we focus on that instead of, "Hey, this is all really happening to our infant daughter."


So here it goes.. as always, very busy little girl.

Yesterday she had her surgery. Her surgeon found a port small enough for Anabelle. Which was so exciting, that way she didn't have to have a broviac, meaning there are no extra cords or tubing sticking out of her. So she had the port place, had a muscle biopsy and they switch her J-tube to the same type of tube, just a new tube. 


So in preop, we meet the anesthesiologist. After looking over her veins, he asked us why we were getting a port, and that she has great veins. ARE YOU SERIOUS?! This has been something Kyle and I have been deliberating over. Because it is optional. But then we keep reminding ourselves that winter is coming, and that we don't want her to go through what she's been through for blood or an IV one more time. Plus, if she gets sick again, and dehydrated, and they can't get an IV started, she could go into shock and things could be 100% worse. Thanks Dr. Anesthesiologist for making us doubt our decision in the 12th hour. Thankfully her surgeon (who has known her since birth) agreed with us and went forward with the port.   

The surgery took longer then expected. The surgeon said it should all take about two hours. When the 1 hour 45 min mark came, I called back just to see where they were, how she was doing, etc. The nurse said that they just finished the port placement and J-tube, and were starting the muscle biopsy. AH. Why? What happened? Is she ok? Well.. she is/was fine. 
The issue was the doctor had a tough time placing the port due to her anatomy. I understood what that meant when I saw her. Typically a port goes right around or below the collar bone. She had about 4 nicks where he attempted to place it there, then one on her neck covered with a steri-strip. He ended up placing it on her side, below her chest, but kind of on her ribs. There is a little cut about an inch or so above it where he cut to place it.  Before we got to see Anabelle, the surgeon talked to us. He explained all of this to us. We were scared, having no idea what to expect and all and asked how she was. He said she was fine, she did great. But that he was frustrated and not thrilled with what he had to do. He didn't like where he had to put it, and that it is going to her jugular, rather then normally coming out by the heart area (from my understanding). But that it is fine, will all work the same and she won't know the difference. This was huge coming from him. He is a very reserved fellow, who only talks when he needs to, and doesn't speak very loud. Him telling us how he was frustrated made me realize how different Anabelle's body is then other kids. 
But all in all it went pretty smoothly. The anesthesiologist let us know, again, that she has a small airway, and it was difficult to intubate her. But it was nice because he gave me pointers to let the next anesthesiologist know ahead of time what to expect and how to make it easier. 

We finally got to see our baby girl about 4 hours after handing her over. She was not a happy baby. We discussed which pain meds to give to her with the nurse. She said Morphine. I was TERRIFIED. The last time she had Morphine was after her Gastroschisis repair. And she was on a ventilator for 5 days. And they had to bag her time and time again. Like I said, the hospital is very parent guided. Great. Make me make this choice while my daughter is waking up from surgery, in pain... Ok, let's do it. Her normal dose would be 1.5 MLs, and we started out at .2 MLs. About 15 minutes later we realized that didn't do much. So she got another .2 MLs. Then she was feeling much much better. No more crying. Her crying wasn't full on crying, it was more like whimpering. And no side effects!! She did wonderful with it! Still hate giving it to her... but it worked. Then we were still suppose to go home that same day. Neither Kyle or I felt comfortable with that since she had so much done. We just didn't feel  comfortable we could control her pain, and what happens if her breathing acts up? Nooo thank you. Finally her surgeon said we could stay overnight. Oh, and I got my honorary nursing degree yesterday too. I wish it could work in real life and I could skip the schooling.. Ana's nurse in recover just mentioned how I know everything about her and how I could do everything she was doing. So maybe I could just be Ana's nurse :)

Later that night the nurse on the floor was giving Ana her meds, and she clogged her brand new tube. Now... I've done this countless times, so I knew it could be unclogged and didn't panic. But I guess her nurse is new, because she mentioned, 'Great, the rookie nurse clogged your tube.' Next time ya might want to keep that thought in your head, just sayin'. So I walked her through it. Told her what to grab to unclog it. But man, she clogged that thing up good... It was tough to get undone, but after about 20 minutes it was done. 

Anabelle slept all night, with only waking up her and there to whimper and complain. But overall her pain was controlled. She did have some weird breathing until about 11 PM. She was breathing like you would after a good hard cry. Kind of a hyperventilating breathing. But she got Tylenol with codeine at 10, and by 11 it stopped. 

I do have to mention that after she got her Morphine and opened her eyes in the recovery room, we got a few half heart-ed smiles out of her :)

In other news..earlier this week we meet with her GI. She has plateaued with her weight. She is hovering around 11 lbs now. She wants us to slowly increase her feeds again, until she can no longer tolerate it. We have to find her threshold. We think that with the extra therapy, and how she is almost always sweating, that she is burning to many calories. And since we can't stop either of those things... So she was at 16 ML/hour, and the GI wants us to go up 1 ML every day to every other day. As we see fit. Another thing where it's great because we went to medical school and all. 

I really can't complain. I would be upset if they were telling us what to do and not asking our opinion. It just makes me nervous because I'm not a nurse, a doctor, or anything close to having any say over anything medical. We will see how far up we can get Anabelle. The goal is at least 20, but who knows what she needs, it might be higher. Her GI is trying to avoid the use of TPN. It can cause liver failure, and we don't need to go down that road. She is a big advocate of NOT using it. 


In family news!

Allison started preschool (the same day as surgery...)!!! She will be in school 5 hours a day, for 5 days a week! She said that she liked it and had a good time. Of course I feel horrible though. Since it was planned the same day as surgery, we didn't pick her up and Kyle's mom did. Thankfully we have someone to do it (Thanks Cindy!), but it's something I would want to have been able to do. She did get cut on the chin by a little boy though... :( 
And Amelia had her first day in a 5 hour class, with a new teacher. She said that she liked it too!! And that she had fun, which is such a huge relief. OH. I called during the day to check on them. The teacher said that Amelia didn't take her nap, as usual. But she kept saying that she had to go potty. This is her way of avoiding naps and bed time. But every time she got up she did her business, so I guess you can't get too mad. 

But they are such awesome little girls. The other day Amelia asked if the doctors were going to cut Anabelle. We have decided it is best to keep the girls in the loop, and try to prepare them and explain things about Anabelle as best as we can. We don't keep anything a secret, we are an open book with them. I know they are only toddlers, but.. we think its best. We'll see how it plays out in a few years, but, for now we are doing what we think is best.

I digress. She asked about the doctors cutting Ana. I said yes, they are going to do it tomorrow. She got up and come over to us (I was holding her), and said how she doesn't want the doctors to cut her. We explained what they were doing, and why. What to expect the after, and how she will need to be careful with her. She said that she was sad, and that she didn't want them to cut her. And how she wanted to cry. Oh. My. Goodness. I love her!!!! She didn't cry. But just to know that she is so mature at four to realize this, and what's going one. Meanwhile, Allison is in the background jumping up and down, saying, 'They're going to cut her', kind of in a singing voice... 

Now, some might think this is horrible, because it's too much on a four year old. You might be right. To me though, I interpret it as her understanding what her baby sister is going through, showing proper emotions, and showing that she loves and cares about her sister. 

With each passing day Anabelle is getting better and stronger. Tomorrow we get to schedule an appointment to use her port for a blood draw. I'm terrified. I'm scared that it will still hurt, but mostly I'm scared it won't work. We will see... 

But we appreciate everyone's support, prayers, thoughts and good vibes through everything. It really makes a difference knowing people are there for us, and more importantly for Anabelle. Thank you!

With love, 
The Polks