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



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

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

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

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

Nursing!

Today was an awesome day!!! We got in home nursing set up. :) So while I am at work, Kyle is at home with Amelia, our four year old, Allison, our three year old, Anabelle and now her nurse! I can't lie though.. It was a little awkward first meeting her and getting everything set up. I know it will be awkward at times for Kyle though. Anabelle is still a baby, and sleeps a lot. So when she is sleeping.... What will the nurse be doing? Hm...

But she is nice, and pays attention. She did a lot of range of motion with Ana today which is awesome. I try to sneak it in throughout the day while at home, but between doctor appointments, medications, getting the girls whatever they are wanting, etc etc. So it's super nice to know it will get done throughout the week, every day. She is familiar with feeding tubes too which is a plus! And she likes to hold her; not afraid she will break her, hurt her or whatever it is that makes people to scared to touch her. 

We did however have a one night stay in the hospital over the weekend though... On Friday she spiked another high grade temperature. My first day back to work. Kyle was a trooper though. He took Amelia to preschool and took Ana (with Allison in tote) to the ER. It was his first time, and he had to do it with Alli too! He did awesome. They had to do blood work, again. Her white blood cell count was slightly elevated. I mean, normal range is 11,000-17,000, and her count was 20,100. See, slightly. An elevated white blood cell count could indicate an infection somewhere. So they cath'd her again to see if it was a urinary tract infection, and over an hour they got a DROP. No joke. The nurses tried to get an IV to get her more hydrated and get more urine for the tests.. I lost count, but I think it was somewhere around 14 attempts. And they all failed to get an IV started. The PICU doctor wanted to observe her overnight and repeat the blood work just to see. Luckily she is ok, and we only spent a total of about 24 hours in the hospital. 

He also recommended talking to other doctors of hers about getting a port or broviac. These are typically used for chemotherapy. But I think it might be a good idea. The hospital stay mid-July, the two week stay, was scary. Ana was very dehydrated. They tried many many times to get an IV started. They has the nurses on the floor try, the NICU nurses, IV therapy (supposedly super good at getting an IV), and then the doctor came in. I swear I could see his forehead starting to bead with sweat. He kept saying if he couldn't get it soon then he'd have to do a central (which requires anesthesia) or something with putting a needle in her bone... all because he was afraid she would go into shock. 
So, I think she should get it.. 

But back to this home nursing... 

It helps so so much. Today Ana had a follow up with ENT (Ears, Nose, & Throat). The nurse is able to assist Kyle at appointments, and went with him today. It helps not only to have an extra set of hands, because he will have to take one or both of the older girls. But also because she has the medical terminology in her back pocket. Luckily I am familiar because of my job, but Kyle is just starting to learn. And from our experience today, it also helps because she will be an extra set of ears to help remember what the doc says and relay it back to me. Kyle is just a bit occupied with trying to just manage just getting through the appointment with the girls. Oh yeah. I despise her ENT doc and we are getting a new one. She spent 5 minutes with them, didn't touch Ana and all she said is as follows. "Is she thriving? Good, she doesn't need a trach. I am referring you to a plastic surgeon to follow. (Do to microcephaly)". Helllloooo?!?! She has given us grief in the past too.. 

Ah. So nice to have help with the little stuff. I was telling her how nice it is that we can start focusing on ANABELLE. Not medicine, therapy, or any medical stuff (at least for a bit). We can enjoy our baby!! YAY!!!!!!


Also, it helps making going back to work a whole lot easier!! When I was home it was tough with two people, so I was panicked when it was just going to by Kyle. Not because he isn't capable, just because it's a lot for one person. 

*BIG SIGH*

I finally feel like the pieces are starting to fall together, in the right order! 
I'm totally jumping on this bandwagon and praying to goes for a good long while! 

With love, 
The Polks 

Hospital stay #3!

Anabelle's GI decided that it was time to switch her from a G-tube to a J-tube.  Her reflux was so bad that sometimes she would turn blue. No good. 

July 12th we went in and had them switch it out. With a G-tube the tube just goes into the stomach, very easy to switch out for another. With a J-tube it's a little more tricky. 

First, to place it she had to be put under. An Interventional Radiologist placed it. Basically they used a X-ray machine that took current and live pictures. I think... I'm still fuzzy on how they did it. It was all very short notice. It was done as an outpatient procedure. Well. It was meant to be. 

We went in to the hospital. After much confusion regarding size, procedure, etc etc.. We finally went to the room. I was able to sit by Anabelle and kiss and talk to her until she fell asleep.. Until they put her to sleep. 

July 13th. The entire night she had been extremely fussy. Couldn't sleep. Her tube site (on the outside) leaked a few times. I just figured it was because they had just messed with it. But by morning I knew it just wasn't right. She had been trying to sleep. But there was just something preventing her. I thought I was overreacting, like I tend to do. So I called the on call pediatrician. He suggested I take her in to see them. So I did. Her doctor wasn't sure what it was. She said to take her to the ER and have them Xray to check the J-tube placement. So me and little miss Ana were off to the ER. I really hate going to the ER. Not only due to the long waits, germ filled people, people who don't need to be there, etc etc. But also because most of the nurses and doctors have no idea what to do for her. They usually have to call in a doctor who has already seen her before. And also because I have to explain Arthrogryposis to almost everyone, patients, nurses, doctors... I don't mind spreading awareness, however, when we are in the ER it is usually because she has some issue and I don't want to explain it 100 times. Or explain that no, she just has leg casts, not a spica cast. No, they are not to bring her legs down or relocate her hips, they are to bend her knees. The tubes you see are her feeding tubes. Nope, the only thing she takes orally is her binkie. *sigh* Sorry, it's just exhausting. More so when she is crying the entire time. 

What was I trying to get at again? Oh yeah. So we get back to the ER 'room'. They actually just gave us a gurney in the hallway. The nurse was nice and after triage-ing us took us back rather then sending us out to the masses again. 

The doctor took his time seeing us. Then said that he will have to confer with the pediatric intensivist, then get back to us. Meanwhile Ana's tubes are filling up with yellow... stuff. The ER doctor has no idea what it is.. Her bag had about 40 ML's. (just over an ounce).. What is going on!?! 

So finally after a few hours and and xray showing things are in place, he comes over and says that we have to go upstairs and they will figure it out up there. And as I should know, this won't be able to be fixed as an outpatient. Um, excuse me? I did not think this is the path we'd be going down today. I hadn't eaten yet because I thought we'd be home after her appointment with her pediatrician. I didn't have my purse, extra diapers, food for Ana, nothing! 

After a good chunk of time, the PICU (Pediatric ICU) doc sees her. Says she needs an IV because we haven't been able to feed her and she's dehydrated. FUN! It is beyond hard to get an IV started on this little lady. I honestly lost number of how many attempts were made. The doc said if they couldn't get one soon they'd have to do something where they stick the needle in her bone... I don't remember what it was called, but it sounded horrible. He was just trying to avoid putting her under anesthesia. I think an hour after starting, and about 5 people trying later, he finally got one in her foot. We got the IV started. But still no food.

In the end they think the balloon was just inflated to much for her little body. They believe it kept slipping and blocking things it isn't suppose to, causing food to come back out, and great pain for Anabelle. Also, her GI told us that they used the wrong J-tube. They were suppose to use a low profile J-tube, which would enable us to be able to hold her chest to chest with ease, have a medicine port closer to her so meds got to her faster, and not have a tube sticking out that can get pulled, wallow (again), etc. The first few days she was miserable. She was throwing up, non-stop crying, not sleeping. Then they figured her feeds where to much at once for her. So for about a week we played with her volume. The PICU doctor was threatening we'd have to use TPN. Luckily her GI is amazing, and has a few tricks up her sleeve. Typically babies eat 20 calories per ounce, however, she's bumped up to 45 calories per ounce. Unfortunately that isn't enough. So we've added a few medications to help. A few that are not cheap and not covered. Even with all of this she is still irritable. The GI has told us she thinks it's now because she is anticipating reflux, discomfort and/or pain, therefore she cries. The PICU doc thinks it's something GI related. So since no one can agree and figure it out, she is temporarily on Ativan. Awesome. My four month old is on an anti anxiety med. I have mixed feelings about it. And question if it is the right thing to do. 

After 13 days, they finally let us out. She still needs to gain to be on the low side of normal. Another reason they started Ativan. If she is fussy and crying all the time, she is burning calories. 

Oh. And today we meet with genetics. I thought that since we had an amniocentesis and microarray done that they wouldn't have much to tell us. Boy was I wrong. In short, he wants to do a muscle biopsy. And he was upset that they didn't do it while they had her asleep for this last ordeal. So in a few months they will put her to sleep for the fourth time and take a piece of her leg muscle and do a battery of tests on it to search for answers. The genetics doc said he wants to give her a break since she's been through so much so far. Thankfully!! 

And! I go back to work in one week. YIKES! Luckily I think we have everything for her in check. And hopefully we can get some nursing set up soon to help while I'm away. It's been a long (almost) 5 months. And I know it's just the beginning. I'm just happy that she will get a break for a little while and hope that she can just relax and grow and be happy :) 

It's tough to think that my little baby isn't healthy. It's hard to say that she is special needs. I always say that all I want for my kids are to be happy and healthy. And it's tough when I don't know if or when Anabelle is going to be healthy. Where we don't have a page full of specialist phone numbers, and have a list of meds she is or has taken, or tons of medical equipment laying around. I know things will be ok eventually. It's just hard at times to admit that right now they are not great. Thanks for letting me vent :):);)

With love, 

The Polks

122-79 = 43

I just counted all of Anabelle's doctor appointments, ER visits, and hospital stays thus far, and it drives me crazy how much this little girl has to be bothered by doctors. I could have missed some doctor appointments because sometimes I don't get them written down, but this is what I counted as of today:


 41 doctor appointments 
 36 days in the hospital
+2 ER visits
79  doctor things in her short 122 days of life


This means we've only had 43 days of relaxing. Ugh.


I have to share this story to get it off my chest. This past weekend we all went out as a family to a fundraiser. I was sitting their holding Anabelle as she was sleeping. People were walking back and forth, not really paying to much attention to us. But this one group of people... It appeared to be a family; mom, dad, older kids. The dad made it obvious to stare. I think he was staring at the bag that had medical tubing running from it to my daughter. But still.. just ask! As he walked toward us, he STARED. As he passed us, he STARED. As he walked past us, he STARED. I looked up and when he noticed me, he smiled. I said hi, he said hi back. And continued to stare. Seriously!? I wish I was more experienced with handling these situations. I know I will get there over the years. But c'mon man! 
I just find it unfair. And right now I'm having one of those moments where I question why. Don't worry, it'll pass in a few minutes :)


Last week was suppose to be easy. On Monday we only had casting, P/T and a follow up with her surgeon. (Whom I love by the way!) But in about 30 minutes we added a sleep study and follow up with her pulmonologist. 


First, her casting. It went awesome! Except she has a small pressure sore, so this set of cast only lasted a few days. They use soft casts so we can take them off at home if she needs, which is nice because she needed them off yesterday! But her doctor is so happy with her progress. Even though it's slow. But her knees will barely go hyper extended anymore! We're going forward still until he feels she hits a wall.

Just look how far she's come! From not even being able to take a picture of her legs separate to... 

This!! 

Progress! I asked the doc if he thinks she'll need braces (AFO's or KAFO's) to walk, and he said probably. Just because the muscle there isn't what she really needs to walk. But I'll take it! Now, he's not saying he's 100% sure he thinks she'll walk, but he said if she does. Now if he says no, we're getting a second opinion, of course. 

Then we had P/T. She laughed for her p/t lady! She's only laughed a little for me, but this was a hardy full on laugh. Stinker butt. Overall though, she hates p/t.

Then the sleep study. Mind you this was all on Tuesday. Casts at 8, P/T at 3:30, then the sleep study from 7:30PM-6 AM. FUN day. 

Wednesday we met with Dr. Chipps, her pulmonologist. He said that her sleep study was improving. Not good, not great, but better then the first two. Good news was she doesn't have to be on oxygen anymore, only when she needs it, and we don't have to see him again for 2 months! YAY!!!! I wanted to hug him! But he's not really a people person and I think he would have told us to find a new pulmonologist... 

These past few days have been hard though. She's been really crabby. Little princess doesn't like to be put down. She likes to sleep chest to chest. Which makes sleeping for us muy difficult. I usually sleep on the couch with her so that she isn't crying all night. With our first two we'd let them try to sooth themselves. But Ana can't really do that. She has trouble keeping her binki in by herself, and we (I) always think it's something bad when she cries. 'Are her casts bugging her?' 'Is her reflux bad right now?' 'Does her tube hurt her?' 'Does she have gas?' And on and on and on. It's a guessing game. 

But then she makes up for it. She'll relax and calm down, and give us the biggest smile ever! Underneath it all, she is a happy baby. At least she wants to be. She love talking to her sisters! She'll talk their ears off! And I think they love her too! 

OH! And Amelia started preschool last week!

I know, my kids are cute :) 

This weekend Kyle and I get a night away for my birthday :):):):)

Thanks Leah!!!!

Yes! A family member is crazy enough to take on all three of our kids overnight, plus their own! And we get to escape to San Francisco for the night, and go to Alcatraz. I am nervous, terrified, thrilled, scared, excited, panicked, and more all at the same time. I know we have enough equipment to make sure Ana stays safe and sound. It's just scary. And I know we're leaving her in capable hands. I don't doubt that. I just know it can be rough when Kyle and I are home, and we have just our own kids. Anabelle requires a lot of attention...

But we love her. So so much <3

With love, 

The Polks