Thursday, February 24, 2011

Strollin' Along

I bought a new umbrella stroller for Bubby—I hate to unload the “Cadillac” double stroller when it is just the two of us. For the same reason I was going to buy a stroller frame to snap your car seat into when it is just you and me. But rather than keep three strollers in the back of my car, I decided to wait until Liam’s came on the off chance it would work for you too. I figured it wouldn’t be supportive enough, but I was pleasantly surprised! Hurray!

Look at how absolutely ADORABLE you are! Good thing you are mine, otherwise I would have to steal you.

Wednesday, February 23, 2011


Well, stinky news. Mrs. Liza (PT) came over today and checked out your new AFO's. She didn’t like them either. She pointed out what exactly doesn’t work, so that I can tell the orthotics shop when I ask for them to be remade.

1)Your feet are entirely too red, for too long once the braces are removed.
2)Your toes are purple. (Although mostly I attribute this to you being Audrey.)
3)There is extra space in the ankle--where you need the most support.
4)Your heel doesn't completely make contact with the mold.
5)They over-correct and when we don't use socks, we can see where they push so hard your feet turn white.
6)Your left toes are cramped.

I hate that you have to wait longer before you can get in your stander. But I am glad I trusted my gut and didn’t torture you by making you wear them these last couple weeks.

**This is officially the worst post title ever published. Just know that I am aware.**

Thursday, February 17, 2011

Caloric Decrease

I was certain you would have gained weight over the last month since overall you haven’t thrown up as often and I increased your feed. You ended up losing .15 kilos. What?? So we started going over what could have gone wrong.

It turns out there was a miscommunication with your nutritionist and I have been underfeeding you all this time. I could go into what all happened, but really it doesn’t matter. Long story short, I should have been using 11 scoops to make your daily 24 ounces, but I was using 9. Because I gave you that extra nightly feed, you really pretty much broke even. But remember that caloric increase I was so proud of? Yeah. Didn’t actually happen. Oops.

Let’s just say we were introducing you to Elecare slowly.

Tuesday, February 15, 2011

Rear Control

We saw Dr. K today! It had been a very long time since we last visited him. We were supposed to go back last September, which would have been a year, but thanks to scheduling conflicts we just now were able to make it work. So almost 18 months later, 30 months after your colostomy pull through, your bottom “feels amazing” according to Dr. K. He really has a way with words and always makes us laugh.

It’s exactly what we wanted to hear! No need to start dilations up again, your scar ring is soft and not causing any issues. In fact, he thinks your Hirschprung’s is very much under control. It is one of those diseases that once you have it, there is no “cure”. You can treat it, but it is always there. However, Dr. K doesn’t think you act like a Hirschprung’s patient at all. This is surprising considering our track record. We’ll take it!

I mentioned to him my theory of your episodes being bowel movement related. I told him how I thought you got backed up despite your chronic diarrhea and that’s why once a month or so you vomit non-stop and have huge diapers. Dr. K was able to confidently tell me that at this point, that is not the case. He saw your hip X-Rays and could see that your “tank was completely empty”. I was positive my theory was correct. Experience had practically proven it to me! So now I am back to square one on all this. Dr. K thinks we ought to have GI try some exploratory measures, such as biopsies or probes, to figure out what is happening. An absorption issue was thrown out there as something to look into. But really, the possibilities are countless. One thing is certain. We need some answers. Because we are going on our 6th straight week of diarrhea, and that’s not good for anyone.

Monday, February 14, 2011

Love Bug

Happy Valentine’s Day my love! I have had the flu since Thursday, so no kisses or hugs for you. I want you to stay healthy. I miss you a lot. It must be confusing for you to occasionally hear my voice, but never feel me love on you or hold you. I wish I could explain why. Well, I DO explain, but I wish I knew that you understood. We will make up for lost time when I am no longer contagious. And in the meantime, Daddy is staying home with you and Liam today while I heal, so I know you will have a great day.

Friday, February 11, 2011

Test Results

The results are in from your tests last week:

Your cholesterol level is up from 7 to 16. That’s a great improvement! Still unbelievably low for anyone, let alone someone who gets three doses of straight cholesterol daily. But at least we are going the right direction on that. Your 7-DHC is still going up which is the opposite direction we want. And usually when cholesterol goes up, 7-DHC goes down. So I am confused on that. We need to get a specialist to look at you. I know I say that all the time. But really, I think it’s so important at this point. Unfortunately they all live way north and most aren’t accepting new patients due to lack of funding. I think they would love to see you because you are such an abnormal case. But that may be exactly why they aren’t interested. Perhaps they want to see the most average of SLO kids in order to have their research go further.

Your hip X-rays showed no change, and looked fine. Still, the concensus is that your hips most likely slip in and out and we just X-rayed them on a good day.

Your scoliosis is getting more serious. (Which of course, we knew just by looking at you.) The nurse read me the results, but couldn’t really interpret them. That will be a job for PM&R when we see them in March. I jotted down some notes, and now can’t find that sheet. I'm a little sick today and my head is foggy. But if I remember correctly, last time you had a 16 degree curve. Now there is a 16 degree, AND a 44 degree AND a 18…or something like that. But basically it sounds pretty “S” shaped. I sure hope we don’t have to do a back brace but we might be headed that way. A back brace would be better than surgery, that’s for sure.

Thursday, February 10, 2011

Grow up throw up!

Ugh. You have been throwing up so much lately. What’s up with that?? Three weeks without getting sick was enough to make me think we had crossed a threshold into a vomit free (or at least less vomity) life. And here you pick up, right where you left off. Nothing has changed in your diet. You don’t seem to be sick. I have no answers. And also no sleep because we have to suction you so often throughout the night. Today I am super frustrated with SLOS.

Seriously, nothing makes me crankier than bolting upright in bed at midnight hearing you wretch, or choke, or whatever it might be. Throwing off my covers while simultaneously smacking Daddy to wake him up, saying just one word, “Audrey!” RUNNING down the hall, fumbling with your suction, trying to focus my eyes so that I put it in your mouth and nose rather than poking you in the chin or eye. Watching Daddy stagger in the room 30 seconds behind me and having to ask him to turn on the lamp--once, twice, three times--because he doesn’t wake up quite as quickly as I do. Asking Daddy to take over while I go to the bathroom, and then doing the same for him when I come back. Calming you down, wiping your face and hair clean, changing your diaper, clothes, blankets. Lurching back down the hall, collapsing into bed where I lay seemingly forever with my mind racing while you whimper in my ear over the monitor. Drifting back to sleep…just in time to start all over again an hour or so later.

Daddy and I learned a long time ago this was a task best done together. We tried taking turns…me during the week and Daddy on weekends. We tried taking turns throughout the night…“I’ve got this one if you’ve got the next.” But experienced has proven that there is something about having the other suffer next to us that preserves our sanity.

One thing I should say clearly--I am never frustrated because of you. Frustrated along with you and frustrated for you. And obviously (selfishly) for me. Which is absurd because really, you are the only one actually suffering. You are such tough stuff, it’s unbelievable.

Monday, February 7, 2011

Days Without Vomit: Zero

Our streak ended last night when you woke up sick, and again this morning.


Thursday, February 3, 2011

Debt Free

As of December 2010, we are officially (as far as I know) out of medical debt! This was a day that, quite literally, I thought would never happen. At times it seemed so overwhelming. As if our monthly contributions barely made a dent in the massive amount we owed, even though it was hurting our budget and bank statements.

It was so important to us to get it paid off as quickly as possible. Firstly, because God calls us to live a debt free life, and pay what is owed as soon as able. Our first financial priority was to tithe, pay the basic bills, and the rest went to debt. Secondly, because it causes anxiety having that much debt. I hated checking the mail because I knew there would be more than a couple invoices daily. But I made sure to do it before Daddy got home, knowing it would be more stressful for him as the provider. And then thirdly, because we were given amazing services and wanted to pay for what we received. YOU, our little miracle! Every cent went toward your well being and was beyond a shadow of a doubt worth it.

Today I submitted our 2010 taxes to be processed as soon as the IRS is ready. Our refund is almost exactly what we owe on the Trailblazer, so it will be paid off this month, two and a half years early! It feels so good to be essentially debt free. All that remains is our mortgage, which we will continue to pay off as quickly as possible. I love handling our money the way God intends.

And there is a very real chance that if it weren’t for you, our priorities wouldn’t be what they are. God showed us, through you, what is important. There are times I definitely have to stave off the “gimmies” but overall, I have more of a desire to give to others, than spend on “stuff” for ourselves. I realize how blessed I am—and not in the cliché “oh I am so blessed” kind of way. I mean, honestly B-L-E-S-S-E-D, the I-have-never-been-without food-water-shelter-or-transportation-a-day-in-my-life type of blessed. And on top of that I have a closet full of clothes (don’t love all of them and half don’t fit but I never have to go naked in public), an awesome new cell phone, flat screen TVs, Daddy takes me on dates, and I can have chocolate every night if I so choose (and let’s be real here—I always DO so choose).

We may not be vacationing in Europe this year, but we have everything we need, most things we want and still have some room to breathe. Thanks for being the instrument God used to teach us a big lesson. And be thinking about how our family is going to give big this year. I am not satisfied with bare minimum anymore.

Wednesday, February 2, 2011


Yesterday Ms. Mary Beth (your vision teacher) came and brought you a new toy. It is called an AbleNet. Basically it is a switch toy adaptor, but we can plug anything with an electrical plug into it. So a radio, your disco ball, blender…possibilities are endless. And then you can make those things work by pushing your sensitive button, which you do so well.

We started by practicing with your disco ball—you thought it was ok, but you are more auditory than visually stimulated. So we pulled out the hairdryer and pointed it in your direction. That was more like it! You pushed the button for a very long time. You have always loved the wind in your hair.

Ms. Mary Beth had a good idea. She suggested we assign you chores like vacuuming or shredding paper. You can push the button to make the machine work, and I will do the rest. Whenever you let go I can say, “Audrey, we have to finish our chores, push the button.” I think it is a great idea to give you some responsibility and teach you to be helpful. Plus, it is just cute to think of you doing chores!

Tuesday, February 1, 2011

Caloric Increase

Audrey, you have done such a great job on this new formula! It has been over two weeks since we switched, and in that time you have only thrown up once. In fact, you have done so well that last night I added an extra feed to your daily diet. What we have been doing is 4 feeds of milk during the day, and then 2 feeds that are half milk/half water overnight. The purpose of that was to decrease the likelihood of you waking up sick. But last night I took a risk and switched those late feeds to all milk. And you slept through the night perfectly!

This is big because the whole reason we switched formulas was to eventually increase your caloric intake. And just like that, for the first time in two years, we increased it by 20%. I had no expectations to make such a big change so quickly. I am praying you will continue to tolerate this extra feed.

There are only two drawbacks so far. This formula makes you gassy—not fun for anyone holding you, but really not fun for you because it hurts your tummy. Also, your BMs are still very loose. I can’t keep you clean enough to keep your bottom from bleeding. Diaper changes are miserable and even my last resort measures are failing. I will have to call Dr. L because I am not sure what else to do. But I am excited for your next check up because surely you have put on some weight.

Side note: I have already blown my new year’s resolution. I will spend more time today getting caught up on blogs and then resolve again.