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

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

Travelin the states

So just a brief update. Without pictures. Booo. I know.


We finally have Anabelle's helmet. The right one. I guess the manufacturer sent the wrong one or wrong material or something... and she ended up with a BLUE SCOOPY DOO helmet for a week.. Very opposite of a little girls helmet.

We ordered a plain white helmet, and are going to order sticker decals for it to dress it up! She is getting more use to it, although her head is still sweating like a pig in it. It's really gross, but we're told that calms down after a few weeks.

Tomorrow we fly out to Seattle for our appointment with the infamous Dr. Judith Hall. Very excited. And nervous. I know it seems silly and pointless for me to seach for the answers we may never get. Like they why, or the specific diagnosis, etc. I am not sure it will help any. But at the same time it might. Even if not, I would like to be prepared just in case Anabelle asks me those questions when she gets older. Not to mention try to be as educated as I can be. I learned last week that I know very little while talking to other AMC families.



They have a luncheon during the clinic for all the AMC families there, which I am really looking forward to.

Oh! And we had a cardiology appointment a while back, and he said she only has a small PFO. And that it's very common, 1 in 5 adults have it and don't even know it. He did notice that her port line is in her heart, which he doesn't like. But he talked with her surgeon and he said it's fine. So we can check cardiology off the list!
And big news!!! She is starting to sit unassisted!!

We sit her on the couch, propped up but laying back, and she will sit herself up off the couch. Sometimes she falls face forward, or falls to the sides. But she is doing so wonderful! It's like she decided that she was done with always using something for support!

This is extra special news. Besides being a huge developmental milestone that is. We are going back to Philadelphia in March for a week of intensive therapy. If she can sit unassisted, it opens the doors for possibilities of assistive devices such as standers, walkers, etc. Also, it opens the door for the possibility of the WREX (a device to help with arm use).

She is getting stronger everyday. We play a game where we hold her hand up and she has to use her own strength to pull it down. She love its and thinks it's hilarious. It's mostly shoulder use, but I'll take it!
AND!! More big news! She was playing on the floor the other day, and I look over, and she's on her tummy. All by herself! She doesn't like that too much because she is face down since she can't get her arms up, but she did it! TWICE. All by herself! She's going to miss her regular therapy this week because of our trip, but I can't wait to tell them.
She is thriving. And learning. And growing. And doing wonderful all around. I am such a proud mama. She is one in about a month, and to see her go through everything she has this past year, and come out on top. I am in awe.
She's a pretty amazing lil gal if I do say so myself.
Thanks everyone for the continued love and support. It really has made a world of difference.
I promise (well.. I hope to) have pictures next time.

With love,

The Polk's

Busy lady

It's never a dull moment with Anabelle! 

Last week her GI called, and said that if I am not comfortable with her pain level to bring her in, again. To the hospital because it was Friday after 5:00 PM, and that's how our life works. So she had been screaming all day, and then I get home from work and no change. Even with meds. 

I took her in. We got her comfortable and admitted. I meet with the attending doc. I should mention we are VERY familiar with all of the doctors, and most nurses. Probably my least favorite thing. So he comes in and we discuss. He noted she was boarderline for an ear infection, but just not sure. So he wanted a complete work up. yay.... I explain how tough it is to get an IV and blood, and how we're getting a broviac cause of this very reason. I explain how last time they stuck her 14+ times, and still nada. He puts a cap on the times they can stick her, 3. Love it!! 

So two nurses come in to do the IV. These are new nurses I have never seen, which is weird... I explain how hard it is. I explain how I'd like IV therapy or a NICU nurse.. They reassure me that they are pros and can get it. I tell them about the 3 sticks max.... 

Two sticks in, they tell me I'm right, and mama knows best. DUH!
NICU nurses come down. Another 4 sticks. They got an IV twice, but both turned. Meaning they no longer went into the vein, but rather just into her arms.. filling it with meds and fluids. Painful.. 

So no IV. Then lab comes. They did another few sticks and got enough only for 1 of the 4 tests. Great. 

We saw her GI the next morning. Of course Anabelle was all smiles. Making me look insane. Then her GI remembered that in the hospital they blend the formula. Literally, just put the formula and water into a blender and wa-lah! She said that it takes out a lot of the gas.. still seems like she's crazy, but I guess it worked, for a few days. Anabelle came home on Sunday. 
She did pretty ok during the week, only needing Tylenol w/ codeine once a day.. however, Thursday she started getting back to herself. And now, Friday, I called her GI again. 

She also meet with surgery for a follow up. We told him what's been going on. He said that she is too small for a port, and she will get a broviac. But I guess there is such thing as a low profile broviac... (I can't remember if I have already said this..sorry!)

We meet with pulmonology this week. He said that he's happy with how she's progressed. Cancelled a med, added another one. Important news. He said that he doesn't want to repeat her swallow study for at least six months. And he said that'd be early. With that said, she will have a feeding tube, be it J or G, or GJ, for at least another year. In order to get her tube out she has to 
1. Do a repeat swallow study and PASS, showing no aspirating or iffy like behavior. 
2. Eat on her own without touching her tube AND thrive for another solid 6 months. 

That was a little upsetting to hear, only because her GI ok'd a repeat swallow study for as soon as it could be approved.. but it's ok. What ever is best for Anabanana. 

OHH and she is 11 lbs now :D Such a chunky monkey! Her hair has gotten so out of control too.. It reaches her eyes now! I put together some pictures and sent them to a doc for his opinion, so they have some funny words on the, but look how far she's come! 

See what I mean about the hair! 

(yawning because she is bored with me...)

 Her knees BENDING

 Ana laying out :)

As far as family news::: I just got a promotion/new position at work! It will be awesome. I think I will really enjoy the work, and am super super super excited to start!! 
Amelia and Allison are doing awesome. Amelia is really loving school. We have our first parent teacher conference next week! But there is this little girl who I can't stand. She tells Amelia that her shoes are not cute, or her hair or whatever.. then Amelia comes back and says she needs to wear different shoes, or she can't wear braids because this little girl said they are ugly.. UGH. I never thought I could be angry with a 4 year old!! Don't worry, I alerted her teacher to it and she has gotten better, I think.. 
I really don't think Ana and all of her needed attention has affected them to much. People always ask how they are doing with everything. I honestly haven't seen a huge drastic change in them. I feared jealous, outbursts, and just plain hell when we took Ana home from the NICU. But nada. I gotta say, our kids are pretty dang awesome. 

With love, 

The Polks

Testing and guessing

Anabelle has been a busy busy little lady. 


Let's see. Medical stuff... 


She's finally back in serial casting.. It's been a while since her on and off again hospital stays and trips. She has seen Endrocrinology, a Pulmonology team (a nurse, dietitian, social worker, etc.), her Rehabilitation coordinator, and GI. 

Endo wants blood. Pulmonology wants follow ups. Rehab wants therapy. GI wants the most. 

GI wanted an X-ray to check what, I don't know. But we did it this morning. I swear she might grow up and glow from all of this radiation... From my understanding; depending on what her GI sees in the x-ray...maybe not.. on Monday we will switch her back to a G-tube. Then observe. This will be done in the office. We will wait and watch her reflux. Unfortunately I have a feeling that it will be the same. She's still refluxing with a J-Tube, and that goes straight the the small intestine and was suppose to fix all of our worries. So if she still has severe reflux that affects her breathing horribly, again, then we will do a Nissen fundoplication. (gotta love Wikipedia!) So if we do that then we will combine the muscle biopsy and broviac, or a long PICC, like she had when she was in the NICU, and the Nissen. 

Man oh man. My hope is that by 7... 7 1/2 months... things will slow down and we will be settled and things will be smooooth. I feel like we're getting there.. Just a little hiccup in the road.

Like I've said, I'm back at work. And I have been asked more than once how Anabelle is. Honestly it doesn't bother me. It's just though because do you really want to know, because we're just passing by each other in the hall, and I can't fit it all in in these short 5 seconds. And also, I don't want some people to think I'm complaining, or being sad. It's just her story. I don't want them to feel bad or pity her or our family. We are blessed. Honestly. I look at her and always just imagine how much worse it could be. And how far she's come, and what a little trooper and fighter she is. 

Like today! She had such an awesome day! She was laughing (which it's been a while since she's laughed), and was all smiles. And she watches what we do, interacts with us. And most of all doesn't let all of this medical junk get in her way of being her, a happy, loving life baby girl. I have to say though, I think she loves her sisters most. Every time they talk and play with her she is ALL smiles! They love to help so so much. I am so thankful that our family has come together so well and we can all just see our precious Ana :) 


Hopefully we will have more answers as to what the next few weeks look like ahead by tomorrow. 

Oh, and the prayers, good thoughts, vibes, mojo, can we please keep it coming? I really feel it's been working wonders. Thanks <3 font="font">


With love, 
The Polks

Home at last! - again

I'm not very good at keeping up with whole posting twice a week. Opps!


Well we got home with Miss Anabelle on Saturday, so we've been home for 5 days now. On our own. With this stinking G-tube stuff. It honestly hasn't been horrible. It's just difficult to move around the house while holding her. I feel like our home has transformed into some sort of hospital clinic now. We have an IV pole and all. Oh, and our dumb apnea monitor doesn't work correctly, or we're using incorrectly. 


She is still having pretty bad reflux. She is just so darn sensitive. We lay her flat to change a diaper and it starts. And it's horrible. It usually doesn't come up, it just hang out in the back of her throat. Which isn't fun. I'm sure it is just sitting there burning her, and then she cries in pain, and I fear she will some day aspirate it. And she favors being held chest to chest, and dislikes being put down. We can sometimes get away with it, but usually not for long. We have to pad her swing so that she is basically sitting straight up. And she favors this one particular head position that makes it a little tough to lay her down on her back. Luckily our home therapy people let us borrow this pillow thing. It's called a Versa pillow. It's full of little beads, and you shape it how you want, then you can suck out all of the air and it holds its shape! We finally got to use it today. She is actually liking it, kinda. 

I am also excited because they do craniosacral therapy! I just learned about it earlier this week, and was sure it would be hard to find, and expensive. Luckily I asked, and they do it! And it's free! I'm just hoping we can get enough visits for us to become comfortable enough to do it if we don't get visits for it at least weekly. 


I don't know how I am going to get use to this life of doctors. I know we have just begun, but shoot! How do other families do this?! This week we have 6, yes 6! doctor appointments. In 5 days! This week we had pulmonology, two home visits, Shriner's for castings, a post op check, and sleep study. 


Pulmonology didn't do too much. They said that they want her to see cardiology, neurology, and be followed by the pulmonology team. As far as positioning, just don't put her head to her chest. Duh. You see, Anabelle likes to arch her back and keep her airway open. It's hard for her to breath if she is in any other position, and sometimes even that position is hard. I mentioned   Stridor, and they agreed, but didn't say yes or no. Just 'yeah, that's a possibility.' UGH. Like I tell Amelia, it's either yes or no. 


On a good note, we weighed Anabelle at Shriner's on Tuesday. We use their scale for her weighted since she is there weekly. And guess what!? Little miss Belle is 7 POUNDS! So in twelve weeks, she's gained two pounds. Hopefully it's all due to the G-tube and it will just keep going up and up. Also, she is super visual. As always. In the NICU the nurses said she was very 'social'. She loves looking around and seeing what's going on. But now, she is starting to really look at you. She is smiling more and more, cooing, and just being such a cutie pie! It's tough because just laying her back a little to look at her and talk with her gives her reflux. It's just a balancing act. Right now her voice is pretty raspy from that, combined with crying a bunch. It's sad. We've been giving her Tylenol for any pain she might be having, as well as Zantac and Prevacid. 


It's just nice having her home though. I'll take having us all together over a few extra hours of sleep and a more organized home. <3


With love, 
The Polks

Oh, and here are a few pics of the latest hospital trek

'Uhh... mom, What is this thing?!'

She loved this thing! Don't tell, but it made it home with us :D 

Comfy at the hospital

After surgery, hooked up to some machines; Her feeding pump, leads, pulse ox, as well as oxygen. She liked the bouncer/swing they had though!