Quick update

I realized that I haven't updated as much as I should! In over a month actually... I apologize..

What's new with Miss Anabear?

Well, she's learning to use her arms to the best way she can. She will swing her arms and knock things over, or use her mouth.
She's still working on scooting. It's kind of hit a wall, so we're talking with her therapists about getting something to help.
She still refuses to say 'mama'. Even though she tries. She looks intensely at our mouths as we say it and tries.

When we got home from our last Philly trip we had to change her tube. I think I updated about that. NIGHTMARE! Then about a week ago the tube broke again. Now, Anabelle has/had a straight J tube. And the size she had only came in a tube that had an external portion, 'high-profile'. Like the picture below. Except (obviously) that's not Ana, it's a photo off of the internet. Hopefully I don't get in trouble because of it. :)

So when it broke for the second time in roughly a month, I was done with it! We took her to the ER, because it was after hours. I had the ER call her GI doctor, because I wasn't able to get a hold of her. Finally we talk, and come up with a plan. We switched her to a low-profile GJ tube. The picture below isn't wonderful. I'm not sure why there is an apple in it.. But I hope it makes sense. The very top (where the apple is) is what lays against her belly. Then the balloon (the bottom of the apple) is what is inside her belly, along with the rest of the tubing. That way the only part sticking out is flat. It's wonderful. And since the main issues with the straight J-tube are that they broke on the outside, I am hoping this is much better. Plus, we get to see if she will tolerate food through the G-tube again. We haven't tried it yet, because she's been sick, but it's an option!



We meet with her GI last week. She isn't gaining enough weight. She has a registered dietitian (RD) that comes in before the doc, and we discuss options. It's nice to have that available! She said she'd like Ana to be gaining around 15 grams a day, and she's around 2.5. So she's plateaued. Which is difficult because she doesn't tolerate a high volume of food. And in a larger picture it's frusterating because I'd love her to be on a blended diet (BD). Which is literally food, blended. Then we push it through a syringe to feed her, rather then being on a pump. But we can't BD feed her through her J tube, per her RD. And I'm nervous about trying to feed her again through her G. So we are waiting until she is better to try it out and see if we can't get her on a BD through her G. That way we can add more calories, she won't be hooked up all the time, she's getting REAL food.. just good all around.

Let's see, what else. We are STILL trying to coordinate a procedure. Well. Procedure/surgery now. We're still waiting for them to get their stuff together and do a bronchoscopy and the Botox injection in her neck. We had a meeting with her ENT doc, and he said he agrees that removing her adenoids would be beneficial. So now we're adding that on to it. It's a lot, but it's not the easiest for her to be put under multiple times.. I feel bad for doing so much to her at once, but the risks are less if it's once rather then three separate times. Plus, she gets put under so much already, why not try and combine? But we've been waiting for just the bronch since around December.. so we'll see. I've expressed my frustrations plenty, I just hope they understand.

After we do the all of that, next step depends on the results. If her Pulmonologist thinks that we can move forward with another swallow study, we will. If not, then we discuss. I talked with her ENT, and if the reason she aspirates is other than her just being underdeveloped, then it'd be surgical. And if it's surgical, most likely it's be very invasive surgery. We're hoping not go have to even discuss it further than that. We're hoping her muscles are just immature and need to develop more.

But boy oh boy does that girl love to taste food! A few nights back we had a lazy pizza dinner night. And Alli was sitting on the couch next to Ana, and Ana leaned over and started to suck on her pizza! I was also on the couch, so I let her taste the sauce, and she was in love! She was very upset with me when I had to take it away. She's starting to bite food now. It's amazing, yes, but terrifying for me. I am scared she is going to take a bit and aspirate a whole bit of actual food. AH! I don't think her doctor would be pleased with me. I don't even know really what would happen, I hope she wouldn't choke. But ugh. It's wonderful she understands that's what you do, but terrifying.

Other then those big things, the only other thing is that we are moving! We're moving closer to family, so it will be nice. It's where Kyle and I grew up, so we're happy we get to raise our girls there too. Only downside is we have to switch therapists. Which is a huge downside. Once that I didn't realize until after we had everything set up to move. Not only do we have to start over, but I'm nervous it will take Ana a long time (again) to get use to new people. People that move her and make her work.. She's one determined little girl. If she doesn't want to do something, rarely are you going to get her to do it.

Thanks again for keeping in the loop with Anabear! And the support and love! It's amazing to look back on the past year plus and see how far our little fighter has come! Like I always say, we wouldn't be here if it wasn't for you :)

With love,

The Polks



crazy. beautiful

Brace yourself, it's a long one. 

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

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


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

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

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

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

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

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


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

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

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


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

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

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

With love, 
The Polks

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