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

The small stuff

What a week. Poor Anabelle has had eight, yes, eight, appointments this week. I'll give a brief summary of the major ones.

Sleep study/back to pulmonology: We did another sleep study. It was horrible. They were trying to jam two cannulas into her little nose. One to measure the co2 output and one to give her oxygen. After several failed attempts, they just did the co2 cannula with some blow by. She was uncomfortable the entire night, was screaming every 5 minutes. Finally we both got about an hour of solid sleep after they started the blow by. We went back to the Pulmonologist. I guess they finally took it serious because we got to meet the actual doctor this time. He said her second study was better, only about 110 apneas. (Not sure if that is total or just obstuctive apneas). However, it's still dangerously high. We started her on 24/7 oxygen today, 2 liters. She hates it. I think she's warming up to it a little now though, she's sleeping! But he said we will repeat the sleep study, and if that doesn't work then try a CPAP, repeat, then if that still doesn't work we will discuss a trach. This doctor really understands what a big decision it is, and told me how we will make the decision together. Very comforting. Hopefully the oxygen works though! We will repeat the sleep study next week to see where we are. Oh, and he said if this continues long term it could lead to brain damage because she only breaths about half the time. Ah.

Physical therapy/Shriners: We had our first visit with outpatient therapy (not with Shriners). They showed us some stuff, mostly what we already know and do. We also meet met with Shriners hand specialists. She gave us some stretching excersises, and said we'll regroup in 3 months to see where we are at. But good news is Anabelles range of motion is great! She can flex her elbow's a little more then 90 degress, and extend about 30-45. She explained how Anabelle is a little backwards from typical AMC kids. I guess they usually see then with extended arms and flexed legs. But that's Anabelle! :D Nothing is 'normal' when it comes to her medical care. *sigh* But she said she is too small for splints right now, but maybe in 3 months we will try them. Also, she said she doesn't want to be too agressive because Anabelle will show us what she can do and needs help with, from there we will see what we can do to help her. She doesn't want to do something now that will damage her later.

GI: Since her reflux is still horrible, we have switched her to some RX formula. We have three to try, one a week. In three weeks we will follow up with GI and determine if anything helped and if not we will switch to a J-tube. It will help *hopefully* with the reflux, which in turn will help with her breathing. I love her GI. She doesn't fool around. She gets things done, and doesn't make us feel dumb when we have silly questions. And she has lots of energy. Maybe a little to much at times for this sleepy mom. I just pray this works!


Other than that, little Anabelle is just too cute! She smiles all the time now! And her big sister love love love her!!
Kyle and Amelia had a conversation the other day. I wasn't there so I could be misquoting.
Kyle - "You know Anabelle's special right?"
Amelia - "Yeah, like a present!"
Kyle - "Do you know what that means?"
Amelia -"Yeah, it's good!"

Melts my heart. They don't see her any different. Honestly I tear up when I just think about them together. Amelia wanted to cuddle with Ana, and actually sleep with her! Well.. I couldn't let her do that, but she just cuddled as long as she could. Ah! Got to love my kiddos. They remind me of what is important in life. <3

With love,
The Polks

Trach?!

I have known for a while now that Anabelle doesn't breath as well as she should. I guess I never knew how bad it really was until they gave me some numbers behind it.
I just got back from our Pulmonology follow up. They had the results from her sleep study. And the results made me cry.  She started off easy... Anabelle has 5 central sleep apneas, 1 mixed (I forgot what this means), and here are the real kickers, 236 obstructive sleep apneas, and 224 hypopneas. Her miminum oxygen saturation was 40%... It should be 100%! Her total number of desaturations was 480 for the 9 hour study.

Then the really bad part came. The doc asked if I have ever heard of a Tracheostomy, or knew what it was. Going into the appointment today I had two fears. One being they would put her on oxygen. The second, larger fear was they would want to do a Tracheostomy. I've learned when the doctors ask if you have ever heard of a procedure or surgery, they are leaning towards recommending it. Highly recommending it.

Not only is this another surgery for Anabelle. But how the heck are we suppose to handle a trach at home!? I don't know the first things about trachs! Obviously we want what is best for Anabelle... I just don't know how this is going to work.

Tomorrow night we are repeating the sleep study with 1-2 liters of oxygen, they are going to review, and then we have an appointment on Thursday with the actual Pulmonologist. These past two times we've meet with the NP, who has confered with the doctor. I am praying that all she will need is some o2 while she sleeps and wal-la!  She's fine. I have a gut feeling that won't happen. I had a gut feeling about the g-tube, and I have that same feeling again. Just reading other kids stories, and the similarities.. It's just tough.

Well, we will keep you all updated on what happens this week. In all we have 8 appointments now! Wish us luck!! :D

With love,
The Polks

Sleep study

Last week we were scheduled to do a sleep study. They want to do it to check her breathing. Last week the day of Anabelle's appointment, we were at the ER because of her G-tube. I called to reschedule it and they said the next available was on the 5th, of July... Then yesterday morning they called and said they had an opening that night. Yay! I regret not taking a picture of Miss Belle during the study. She looked like she was half robot. She had two wires stuck to her head, three on her body (leads), a strap around her, a pulse ox, and a nasal cannula. They didn't give her oxygen through her nasal cannula, they just monitored her breathing through it. 
I tend to obsess over numbers on the machines. The one that monitored her in/out breaths should have been between 8-40, depending if she is breathing in, or out. Well... At times it would be 0. And stay at 0, for a while. Now, I'm not a doctor, but I know that's not good. And a few times it was high, above 40. The tech said (before we started) that she'd be surprised if she got above 25. Great. It takes about two weeks to get the full results. The pulmonologist has to read everything from her study, which was about 10-12 hours straight. I was impressed it will only take 2 weeks. I read an article warning to be prepared to wait for 6 weeks. 


On the plus side, she seems to be a happier baby! She will smile more, coo more, etc etc. It's wonderful!!! She is so visual and loves looking around. If we hold her, she will move from side to side looking at stuff. The older girls get too excited sometimes, and will talk to her and want her to look at them. But, they will do all of this about one inch away from her face. So naturally she dislikes it and looks the other way. They tend to get offended and ask why she won't look at them. But it's been really nice. They love her so much! Jealously will pop it's ugly head occasionally, but mostly it's them coming over to give her a hug and kiss. Amelia will whisper secrets into her ear. Honestly. Secrets. I can't hear what she says, and she won't tell me when I ask. It's adorable. They sing their made up songs about how they love her. Couldn't ask for more precious moments :)  

Here is a video of Anabelle smiling and talking

                                           

I feel like we *might* be getting into our groove. We still have no routine, or even a glimpse of a routine. But things are getting a little better. I didn't believe all the other moms when they told me things will get better with time, but thankfully they were right! Thanks AMC family! I couldn't have got this far without their help!!! 

Speaking of AMC... Just in case you missed it, AMC awareness day is June 30th. So please wear blue and help spread awareness. There are a few really cool sites where you can purchase AMC awareness gear. No only do you get cool stuff from it, but it helps raise money for awareness. Can I say awareness one more time? I don't think I've said it enough. 


Honestly though. Before Anabelle I has NO idea what AMC was. I don't think I could have pronounced it or even tried to spell it before hearing and seeing it hundreds of times before hand. I have learned so much since Anabelle has been born. I have even been lucky enough to educate some doctors! The doctors who followed my pregnancy (four perinatologist) told me that the combo of how her legs were and Gastroschisis is something none of them have seen, most being in the field for over 30 years. Then I find out that yes, it's common for AMC kids to have intestinal things go on. Oh, and just a little more education on AMC.... I think this helped me understand how to explain it better as well. 

(Click here if it's to hard to read below)

Off to bed, finally :D

With love, 

The Polks