One In A Million

So much to tell you from today. You and I spent a day in the med center while Brother was at MDO. This is the first time I have ever taken you there all by myself. I always have someone ride with me in case you throw up while I am on the freeway. But we have gone another 6 days without vomiting, and I needed someone to pick up Liam in case we were not home by 2:30. So you and I ventured out on our own. Despite the hard rain and very slow traffic that I did not count on, you did great!

First stop—GI. Long story short, we decided to leave well enough alone for now. When/if (who we are kidding?...when) things take a turn for the worse again, we will do an endoscopy under anesthesia to make sure the Hirschprung’s hasn’t made a reappearance.

We were done at TCH in record time, so we made a slight detour into Target as we drove down Main. And Audrey, for the first time in your entire life, I was frustrated by you. Earlier at TCH, I chose to use the umbrella stroller for you thinking it would suit our needs perfectly. And it would have except you decided before we even reached the door that you hated it. I mean pitiful, heart wrenching cries, big tears, the works. I got us inside the doors and examined you closely. There was nothing that looked at all uncomfortable or painful. I even tried putting your blanket underneath in case your non-existent bottom needed extra cushion. Still screaming. So I carried you in while pushing the stroller. As we left the doctor, I strapped you back in, thinking you would be more agreeable. No. Thirty seconds later was the same story. You had taken a firm stance on the stroller and were not going to waver.

So back to our Target detour. To avoid the same scenario, I did not take a stroller. Instead I left you in the car seat and stuck you in a cart. We weren’t two cars away before you started up again. And didn’t stop the entire way through the store. People kept asking what was wrong with you. Nothing was wrong with you. You didn’t need a diaper change. You weren’t hungry. You weren’t in any sort of pain. Your feelings didn’t get hurt. You weren’t overly tired. NOTHING. Of course, nobody believed me –I wouldn’t have believed me. You were super loud and convincing. But you just wanted to be held. And pushing a broken cart through Target while holding a baby connected to a pump inside that broken cart is not an easy feat. So I held you as much as I could, but when it came time to check out you just had to cope. Which you didn’t do well. We walked outside to a downpour. No sense in waiting I thought, let’s just run for it. I did and was soaking wet by the time we made it to the car. You were dry thanks to your car seat shade. We got in the car and the rain completely stopped. On to the next appointment.

I just carried your car seat into Dynamic Orthotics. More temper tantrum from you. I picked you up, you were mysteriously better. Grrr. We met Mr. T and I really liked him. I had put your braces on 15 minutes ahead of time so that he could see the color your feet turned. He agreed that blue and purple weren’t ideal. After checking you out thoroughly, he came to the realization that it wasn’t the pressure of the braces but the positioning. Just holding your feet in a corrected position for about 30 seconds causes the blue hue that takes minutes to go away. He wants PMR to check you out, which thank you Jesus, we have an appointment with on Tuesday. Otherwise it would set us back several more weeks. Mr. T suspects that the correction pinches an artery which is potentially problematic. But in the meantime we agreed to make a new set of AFO’s that correct enough for you to stand with the assistance of a wedge. He rushed it so that they will be ready Thursday morning before our appointment with genetics. That way we will have them a few days before we see PMR. Not everyone is as considerate, and we appreciated it.

As a side note: Mr. T says that out of 33 years of this career, he has only ever seen one other child with the same issue. Hmph. I told him he had no idea how many times I have heard that from various specialists.

We were quickly homeward bound, and made it in enough time to meet Liam at church where Grammy had just picked him up. Despite the pushiness on your part, I had a really great day with you shnook. Sometimes it is nice just to hang out the two of us.

Poopy Pharmacy

Daddy was in our bedroom this evening with Bub when I discovered something amazing. I held it behind my back as I approached Daddy. Our conversation went something like this:

Me: Do you want to see something amazing….miraculous even?
Daddy: Of course.
(I reveal a baby wipe and then dramatically unfold that wipe to show what is inside.)
Daddy: Is that poop?!?
Me: Yes.
Daddy: Gross.
Me: Gross?? Are you kidding me? This is Audrey’s. Audrey’s POOP. And I could pick it up. Cause it’s a ball. It is not a pasty mess stuck to her rear!
Daddy: Oh yeah! Awesome!!

Audrey, this is the first time in at least two months that you have had a well formed BM. Your bottom is pretty much healed up and life is great!

Daddy has a good theory. Your cholesterol med used to be really, really thick. Your tube became clogged easily (I can totally see how it clogs arteries). One day…maybe a year ago?...we got a refill and it felt different. When I shook it, the med sloshed instead of sludged. I thought it was drastically thinner, but Daddy couldn’t tell the difference. It was one of those things where I said, “Remember how it used to feel, used to sound? It never did this before. Remember??” and he would say, “Oh, yeah, I kinda remember now.” (He loves me and just wants to be agreeable. He didn’t remember at all. But to his defense, I usually pulled meds more often.)

I have very little confidence in that pharmacy anyway and their customer service is atrocious, but due to the rare nature of the medicine, haven’t found another willing to compound it. So I called Dr. L asking her to call a specialist for the cholesterol formula, and then to call our pharm to make sure they had the recipe right. What they read to her was correct. Since Daddy didn’t notice a difference, the recipe was right, and I had no concrete proof, I convinced myself I was imagining things and let it go. Although every time we got a refill I thought to myself, it just wasn’t right.

January, we received a letter from our pharmacy saying they lost their contract with Blue Cross, and our script would now cost almost $400 a month. At that point, “find a new pharmacy” jumped to the very top of our to-do list. While I had the flu, I sat with Daddy as he called pharmacy after pharmacy, looking for one that would compound, take our insurance, and order this rare ingredient. Not easy to do. Eventually we found one. And guess what. As soon as we received the new bottle, it felt just like I remembered it should.

Another observation of note: all the other SLO kids get their cholesterol in a cherry aqueous solution or a soy solution. With the old pharmacy, yours was always in a non-cherry, but aqueous solution. Since you take it by g-tube, I never complained about this seemingly insignificant detail. But now that the new pharmacy does make it in a cherry aqueous solution, and is now the right consistency, it makes me wonder what other seemingly insignificant details they left out…

The odd part is our old pharm transferred the script AND the recipe to the new pharm. So they knew how to make it—just did it wrong? I wouldn’t be at all shocked. Angry. But not shocked.

Back to Daddy’s theory. Since your BM’s started down the road to recovery right about the time we switched pharmacies, he thinks that you are getting more, or at least more quality, cholesterol now and it makes all the difference. He just might be right. And since your cholesterol levels have been abysmally low, it will be interesting to see if they start to rise within the next couple of months. And if that’s the case…I don’t know what I am going to do about our old pharmacy. But I have a feeling, they aren’t going to like it.

Audrey Armstrong

Here is a a short clip from your physical therapy session today. You must have knocked this bottle over more than 20 times. I loved watching you play (work) so intentionally. You were super pleased with yourself, and of course I was very proud also.

Brother kept coming over to take the bottle, setting it up in front of himself, and knocking it over the exact same way you did. Then he would look to us with a big smile, expecting cheers like you received. Even though it was cute, it wasn't quite as impressive to me, and a little obnoxious that he kept taking your toy. I expected you to get cranky with him. I shouldn't have been surprised--you thought it was hilarious. He doesn't yet know how blessed he is to have such a easy going sister who loves him so much.

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.

AwFulO'S

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.**

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.

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.