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

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



crazy. beautiful

Brace yourself, it's a long one. 

I've been thinking about doing an update daily. What to write, include, etc. I've been thinking about how personal to make it, what parts of our lives to include. I know personally I read other blogs and feel like I belong. Belong to a club of sorts. A club that doesn't judge, a club where I am not alone, a club where everyone understands. 

First I will update about Ana's medical stuff... 


We have had more therapy visits. One 'feeding evaluation', and some occupational therapy (OT). 

Of course Anabelle didn't have a normal feeding evaluation. Because she doesn't eat. But it was just following up with her speech therapist and see what we can do to help her be ready to eat when she can. Setting up the appointment was frustrating. The receptionist said the have her hungry, but not starving. This way she will show them how she eats. Well, she doesn't eat. She proceeded to disagree with me and was totally confused and baffled with my responses. I told her I know what needs to happen, and don't worry about it. 

She is currently receiving occupation therapy twice a week through CCS. They have to submit a plan to her doctor for approval. The plan includes where she is at, goals, expectations, etc. It was nice reading the parts about how she is a very visual and happy baby. It was devastating reading the parts about her being at a 12 week development mark, how drastic her AMC really is, and just how much therapy they think she needs and how much she needs help with. 

I think it hits so hard because I have procrastinated thinking about life to come. Since we found out that Anabelle had something different going on (at 20 weeks prenatally), it's been a wait and see process. It still is, but some things are becoming evident. She is 7 months old (today, YAY!) but physically where a 3 months old is. It's hard to see it written down on paper. It's hard to see other kids her age at the store, in waiting rooms, at the park. Anywhere life normally takes you.  

Like I said, it only gets to me sometimes. Mostly I am just so thrilled that she is gaining weight and is happy! But I think these are reasons I have avoided updating because it makes me sit down and think about her progress. Her very very slow progress. 

But good news! She was plateauing for a few weeks on weight. We slowly upped her feedings, and now she is doing just fine! Her GI is micromanaging her for a few weeks to ensure things are under control and she is on the right track. This means weekly appointments. And since both us and her are so busy, we get to see her Monday mornings at 6:45 AM. Anabelle isn't loving these appointments, and gets mad when I wake her up. She has done good though! She has joined the 12 pound club! Next Monday if things keep going good we are going to switch from formula to a blended diet. This means blending foods! Actual food! I don't know all about it yet, but she mentioned spinach, kael, oil... and that kids usually do much better on blended diets, especially kids with reflux. She is an awesome doctor. Always listens, very open to ideas, not all medical. Realized that we are people that have to live with this. We talked about this on Monday, and she was explaining how she advocates for her families. That right there was awesome. Her families, not patients. She realizes this effects the whole family. LOVE her! 
*update to the update* 
I wrote this a week ago, and GI has been.. iffy lately. Not the doc. Wednesday I was giving night meds and her tube clogged. It happens. Every time I stress, but we can always get it unclogged. I guess we put too much pressure on it and the tube popped. Totally broke. Done. Off to the ER. Since IR didn't want to come in that night, she had to be admitted until they came in the next morning to get her a new tube. They said it'd be an easy experience, smooth. Put a guide wire in the tube, take the old tube out, put the new tube over the guide wire, place it, then take the guide wire out. Easy! WRONG. The tube was so clogged they couldn't put the guide wire through, so they had to do the entire procedure. And since she doesn't do great with anesthesia, and they said it'd be simple and anesthesia wouldn't be necessary, we didn't do it. WRONG, again. I got to be with her, and the entire time was horrid. I hate myself for letting it happen and her go through that pain. Then Saturday night I was doing meds again, and the damn tube clogged, again. I just balled. I called the GI to see if there was anything else I could do that I hadn't tried, there wasn't. Per her instructions we went in Sunday morning. We went in at 7:00 am and IR couldn't change her tube until 4:00 pm. ALL day without food. And this time we used Propofol and she didn't have to be awake. But then all last night and today she just isn't her. So I took her into the ER. They say she has gas and it's just the side effects from Propofol. We see her GI in the morning so I was done with them. There were a lot of people with coughs and contagious stuff today. So done with the hospital. I wish I could run it and make things run smoothly. 


Last Friday Anabelle meet with Neurology. He wants to wait until the muscle biopsy comes back, but depending on what the results are wants to do another MRI. I'm not exactly sure why (I didn't go), but wanting to check out the nervous system is my guess. 

OH!!! BIG NEWS!!! We have an appointment for Shriner's in Philadelphia! November 5th :) I am terrified things will all fall apart and we won't be able to make it. I also haven't really ever traveled, so I am terrified. Scared of traveling with a baby, a baby with feeding tube, etc etc. But I am hoping things work out, and am trying to prevent them from falling apart. I really want to go out there and see those doctors. The lower extremity doctors here are upsetting. They are unwilling to coordinate. Last week she was suppose to get casted again. Kyle took her in, and they make it seem like we are burdening them. In the end, he walked out without casts. The last casts we got, a few weeks ago, were too tight. Since they use soft casts I am able to take them off at home, which I did. I felt like her care was being compromised. So I am excited and can't wait to see what Philadelphia has to offer. 

She is doing ok overall. Hopefully tomorrow her GI can give us more answers. 


Amelia and Allison are doing good. Amelia is wanting more attention from me, and I can't give it to her all the time. It's hard to balance attention. 

Lately I have been conflicted. Conflicted over having 'typical' kids and a special needs kid. I am so happy and grateful that my older girls are healthy, are able to do things on their own, for the fact that I have never worried if they will be able to live independently, and on and on and on. In the other hand, I am frustrated because I know these things will be hard for Anabelle. I don't know exactly how to explain it. I try to not let AMC effect things in our lives so much. Just take it for what it is and conquer it. Again, the moments of frustration know how to creep its way in. 

But I wouldn't change our life for anything. I am thrilled with each and every day that we have these beautiful girls, and that they are ours. I love them all so much and couldn't imagine life without them. I am blessed to have them, blessed to have such a wonderful partner to go through this crazy beautiful life with. 

With love, 
The Polks