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



I think I can, I think I can, I think I can

I posted a status update of Facebook that we got the results back from Anabelle's latest sleep study. I didn't go to the appointment, but Kyle told me some numbers over the phone and they were awesome. 

But then I just sat down and really compared the numbers. And had to update everyone about how wonderful she is doing! 

Her previous sleep study was June 2012. Her last sleep study was December 2012. 
Here is the differences

                           JUNE          DECEMBER
Central apnea:        69               12
Mixed apnea:          24                0 (Yes, ZERO!)
Obstructive apnea:  216              2
Hypopnea:             580             38

Desaturations:        484            20

In June her oxygen saturation was 96.1% with a min of 52%. The time below 90% was 17.9%.
In December her oxygen saturation was 92% with a min of 65%. The time below 90% was 7%. 


There are more numbers listed. But these are the main (and most impressive) (oh and less confusing) numbers. 

They did say she needs to be on oxygen at night. Which she absolutely hates to the maximum. I tried to connect and get her all set up for tonight, but it's been so long it just wasn't working. There is a part for water (to have it not dry her nose out and keep it moist), but when I was connecting it and turned it on, water just shot up like a fountain. Alli was there to help me clean up though. :) 


But we are having a tech come by tomorrow to show us how to do it all again. Gotta count our lucky stars that it's been so long since we've used it that we've forgotten how to use it. 


While I'm at it...

We meet with her geneticist last week too. Nothing new. I guess he actually cancelled our appointment (forgot to tell us though) because the new tests he ran on her muscle biopsy didn't reveal anything new. And he has no answers or insight as to why what happened happened, or anything to suggests but to continue what were doing. Makes me feel so great to have put her through a muscle biopsy for that. But then again, if the news was different I would be singing a different song. 

We go to see Dr. Hall at the end of this month. She is a geneticist who has done lots and lots of AMC research and is supposedly the best around town. 


Ok. I'm not ranting and raving about how wonderful Anabelle is doing. 

AH! And Kyle took Allison to get her first haircut EVER. I'm still a little sad over it, but she looooooves it <3 font="font">

 This is her being a good. She's learned she can make funny noises with her mouth and tongue 

This is her 'Are we done yet mom?' look. I was just trying to get a picture with all of her gear, but she disagreed with the idea

 Gotta throw one in of Amelia too, just cause she's a cutie pie. 

With love, 
The Polks 
  

Quick recap

So I know it's been far too long since I have updated. It's mostly due to lack of time. So I am forcing myself to sit here and do it!

The last update was just before we went on our second trip to Philadelphia. 

So now that was almost a month ago now. Realizing that I feel pretty bad for not updating. 

It went really good! It was just me and Anabelle for this trip. We also used Hosts for Hospitals (H4H) for the first time too. All in all, it was a good trip. The family we stayed with was sweet beyond words. They opened their entire house to us. The casts were removed. And legs and ankles look amazing. 

The top picture is before, then after is on bottom! Oh, and see how chunky her lil thighs are now too! 

So casts came off, then we went to make sure her braces still fit. We tried out the AFO's and KAFO's. The AFO's just needed to be made a little wider for her new chunk. The KAFO's needed a lot of reworking. She grew about an inch on one leg, and almost an inch on the other leg. And they also needed to be made a bit wider. They had to mail them to us since their metal worker already left and it was the weekend. Below is a picture of what a KAFO looks like. Ana's looks pretty similar, and even has a butterfly pattern!

So our appointment was December 7th. It's the 27th now. And still no KAFO's. Thanks to lovely UPS. They said we refused the package. Right... So they are on their way back to Philly, then back to us. As long as we get them eventually...

We are going to go back in March for a week. A week of intensive therapy. That means daily therapy geared to help her focus on ... wait for it ... WALKING! So our goal until then is to get her to sit unassisted. Over the past few weeks she is getting a lot better at holding her head by herself. I think it is do-able! 

The flight back Anabelle must have caught another bug. She has been sick on and off since then. We started her on Albuterol for the congestion, coughing, and ickyness. We also did another sleep study. We will get the results on the 7th. Really hoping for good results. We also saw her pulmonologist. He recommended doing a bronchoscopy when she is fully over all this ickyness. 


She is getting use to her AFO's. They are keeping her ankles straight. 

Another awesome note. Her GI said that she is getting too big! Well, to quickly at least. So we get to cut down from continuous 24 hours feedings to 18 hours a day. Last weigh in she weighed 15 pounds 10 oz!! CHUNKY! That's almost 11 pounds since she was born. Amazing. 


And she is talking up a storm. She says 'Da da da da da', and 'Ya ya ya ya'. She's become a lot more social too. As long as she has sleep in her. And she is sleeping better most nights, as long as she is feeling good. 

It seems like the appointments are slowly dwindling. I remember when we had 20+ appointments a month, and AMC families told me that it gets easier after a year, and appointments will slow down. I didn't believe it when they said it, but it's slowly starting to! 


Oh, and we had a wonderful Christmas! Ana didn't cry when she meet Santa! 

I can't believe we are creeping up on a year already. Just a few more months. I know time flies with kids, but it seems like this last year has gone by much quicker than normal. Luckily even though it is going fast, it is getting better and better. 

Just so thankful for my beautiful family. And everyone for the support. We couldn't have made it this far without it. 

Thank you!!

With love, 
The Polks

Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo

David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I learned that this is an old poem. But, I think it will outlast time. I am very fond of this poem. It speaks volumes to our new life that we've accepted. 

I typed out a few paragraphs of how sad and upset I get at times because I realize the difference in development between our older two girls and Anabelle. Then quickly deleted it. I realize that ever so often I get caught up in feeling sad because of the missed milestones.

I need to refocus my attention and energy. Focus on how far she has come.

So much farther than I ever thought was imaginable. Yes, the road so far looks like it needs a little fixing, but we're getting there. 

Unfortunately Anabelle has pneumonia again. They said it was viral again, but gave her antibiotics. Last time they said it was pneumonia and antibiotics would do nothing. Slightly confused. And this time she is much worse. Luckily they discharged her from the ER and didn't admit her though. We have everything she would need at the hospital at home, minus a doctor and nurses obviously. But we have a pulse ox, oxygen if needed, apnea monitor, etc. She is non stop coughing, congested, raspy from crying and coughing, and plain old beat. She can't sleep very well, but she wants to oh so much. It's pathetic. 
Our older two have had this bronchial cough for a month or so now. They did 10 days of antibiotics themselves. But it hasn't done anything. And their noses won't stop running either. I'm curious now if they have some sort of pneumonia too, but their doctor isn't open until Monday. 

Even with all the coughing and not feeling good going around, the girls are still smiling. I just love them. They remind me that it's all worth it. 

Last night before we knew Anabelle has pneumonia, she was just non stop crying, wouldn't sleep, etc. I had no idea what was going on. It was my turn to watch her that night. Kyle and I switch some weekends so one of us can get a good nights sleep and stay sane to help balance out the others lack there of. But this night was horrible. I was up with her until 1:45, then she slept for 3 hours. That's it. Around 1:00 I woke Kyle because I was loosing it. She kept choking on her saliva. No matter what I did she wouldn't sleep. So we decided to take her to the ER. I didn't feel comfortable with just one going with her alone in the back seat due to her choking, so we woke Amelia and Alli, and all loaded up. About 3/4 of the way there we realized she was OUT. Totally asleep. For those that are not familiar with the ER... If you take a baby in who doesn't immediately look like they are sick, they will think you are a crazy overreacting parent. They even told me I overdosed her once.. Yeah, that nurse got a piece of my mind.

Anyway. Since she was out, we decided she must have just been tired and now she is asleep and we'll go home. So we get home, she sleeps until 4:45. I try to deal with it. I don't. I lost my cool. I fought with Kyle (before and after our attempt to the ER), I couldn't figure out why she was acting this way and got mad with her. I realize it was very illogical to get mad with a 8 month old baby. But I did. My tone with her was not a nice one. And today I feel like I deserve the worlds worst mother award. Kyle took her into the ER this time, around 6 AM. They got home around 1:30 pm, and I felt like she was mad at me, like she didn't want to look me in the eyes, let alone in my direction. It could have been that she was just tired, but it didn't feel like it. It felt as if she was holding a well deserved grudge at me for loosing my cool with her last night. It is defiantly my lowest moment as a mother so far. I mean, I get upset with the Milly and Alli, but they are older, they can talk and tell me what's going on usually.. But to get angry with a baby, and come to find out she was acting like she was due to pneumonia! Yep. I earned that award..




Hopefully this ugly bout of pneumonia will only last a few days. We go back to Philadelphia soon, and I'm a little nervous that her doc will say she can't fly if she is still sick. Obviously I don't want her to travel if she is sick either... I just want things to run smoothly. I'm always worried about when that monkey is going to throw his wrench in our plans. Dang monkey is always running our plans...

And thank you everyone for the continued love, support, good vibes, etc. It means the world to us. Honestly. I get a little teary when I think about how many people have helped us get to where we are today. Thank you.


With love, 
The Polks

The new normal

nor·mal

 [ náwrm'l ]   

1. usual: conforming to the usual standard, type, or custom
2. healthy: physically, mentally, and emotionally healthy

Firstly, I don't want anyone to be offended. My intend is solely to express my feelings. If you disagree, that is perfectly ok and I accept that. As I hope that you accept that mine differ from yours and we can still respect each other. 

I have three daughters, Anabelle is our youngest. I have done the baby things that majority of people deal with, what you typically think comes along with having a new addition to the family. 

With our older girls there were the middle of the night feedings, burping, spit up, introducing foods, tummy time (with ease), learning to crawl, holding their heads up (basically from birth..), doctor appointments for check ups and only very rarely between, playing with toys, etc etc. 

With Anabelle there are continuous feeds, no need for burping because she has a bag that does it for her, and nothing is in her stomach anyways, spit up that is bile only and due to severe reflux, nothing orally because she can aspirate, a variety of medications and hospital visits, and very physically delayed. Oh, and about 20 doctor appointments a month. 

I do not say any of this in a negative light. I mention these things because they are not normal. People continue to tell me that Anabelle is normal. Yes. There are things about her that are normal. She is a beautiful little girl, a wonderful addition to our family, I wouldn't trade her for any other baby, and her basic needs are normal as any other baby out there. 

However, her feeding bags and list of medications are not normal. 

Her formula being prescription formula is not normal. 

Her going to therapy twice weekly is not normal. 

Yada yada yada....

I hope everyone understand what my point is. I am a little tired so it makes sense in my head, and I just hope it makes sense as I type it. 

So medical update! yay.

We have the first set of results back from the muscle biopsy. From the conversation with the Geneticist all positive. The basic: It's non progressive. Which is the answer we were looking for. In the consult, he said that sometimes conditions start out looking like just Arthrogryposis, then become degenerative. So finding out that she can only get better was a huge relief. He also said she has Fiber Type 1 & 2 disproportion. Also, he said something about active necrosis. I am confused by all of this. It seems a little oxymoron to me...  And the nurse was trying to explain the blood results over the phone, and I was totally confused. I asked her to send me the report because it was all just too much to understand over the phone. Oh, and they are still doing tests on the muscle to see what else they can find since the first tests were somewhat inconclusive. 

These are just a few paragraphs from the records, just to explain how easily I can get confused:

'The muscle biopsy shows necrosis in two adjacent fascicles with near complete necrosis of their fibers that are being replaced by an infiltrate of histiocytes at the periphery of the necrotic fascicles. That change, which essentially represents infarctions of the two muscle fascicles, is not present in the remaining fascicles of this biopsy. The necrotic fascicles are not associated with significant inflammatory infiltrates other than the histiocytes at the periphery of the fascicles, and the remaining fascicles of the biopsy remain free of inflammation  There is no evidence of vascular thrombosis.....

Trichrome stain does not show the presence of "ragged red" fibers that could indicate a mitochondrial myopathy. Likewise, stains with SDH and COX (both mitochondrial specific enzymes) show no evidence of an abnormal pattern of staining. The fibers retain a normal amount of glycogen with PSA stains with and without diastase and normal amounts of lipids are detected with Oil-red-O stains. NADH stain does not show the presence of target or core fibers.'

So... with that said... if you understand all of this please let me know what the heck is means. I understand bits and pieces. But.. 

So with that and her appointment with the neurologist, we are moving forward with another MRI. I don't really know what the right path is, or if we are choosing the right steps, and all I can do is hope that we are. It will be about 3 hours and it will be on her brain and spine. So that means anesthesia for the 6th time since she was born. Not my favorite, but it's what we have to do. 

I wouldn't trade any of this crazy chaos for the world. Of course there are times I want to just throw the white flag up. Then one of the girls or Kyle will do something to remind me it's all worth it. I am remind to appreciate every day given to us. 

When we first found out there was something different with Anabelle, we were told she probably wasn't going to make it to birth. So here, 7 months and 14 days post birth, I can only be thankful for our journey, no matter where it leads. It might not be the normal path, or the path we expected, but it is ours and I wouldn't change it for anything. 

With love, 

The Polks

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

Day 8 at the hospital

Yesterday Anabelle had a bad case of reflux. I laid her down to change her diaper, and BAM! She couldn't catch her breath, started to vomit, etc etc. I called her nurse once to see if her feedings were just a little to high for her to tolerate, and she said no, she's fine. And if she continues to have episodes then they will call the doctor. And just FYI, Anabelle is at risk for aspirating, so her reflux and vomit could go back down into her lungs. It's not a simple, 'Oh she's fine, no biggy. Just a little reflux.' So she was still having issues when the nurse left and I went out to request the doctor come by so we can talk to him, and went back to our room. I guess she followed me, cause as I walked in she was right behind me, luckily. Anabelle's stats went down and she was vomiting. At times it seems like the nurses only believe us when they see it for themselves. Then another nurse came in, and another. The put her on a nasal canula (I'm sure that's misspelled). Luckily she was doing better in the wee hours of the morning so they took it away. 


Today was a big day for her. She got off oxygen, got her casts off, had a P/T consult, got an IV ripped out of her hand... Oh and she is still recouping from surgery 3 days ago.  They bumped up her feeds from 10 mls, to 15 mls, to now 20 and fortified. She is on continous feeds, so she is getting 20 mls every hours, which is just under an ounce. She is still refluxing but seems to be ok. 


OH. And we got Amelia and Allison back from sitters yesterday. They've been gone all week. And i don't know what ahppened, but Amelia's little attitude is horrible! She thinks she is way older then she is, and has attitude for 5 little girls. I don't know how we're going to live through her teen years. 


I don't know how we will get through this next year! It's been so crazy and hectic these past few months. I feel like we haven't been able to really get anything done for Anabelle as far as her AMC goes. Oh, but her knees do look a lot more bent. But it just seems like we keep hitting dead ends with P/T and whatnot. So frustrating! That mixed with my disability issues and hiccups, and work needing papers and not understanding I'm not home right now, I live  at the hospital currently. Stop calling me! Ok, I feel a little better now. Maybe...


Hopefully Anabelle can come home tomorrow, but I'm not holding my breath anymore. I've heard this so many times, I just want to make sure she is ready, no rush this time around. But I'd like to remove the stress from hospital trips from our mix. We will see! 


With love, 
The Polks