Wednesday, March 30, 2011

Quick(ish) ER Trip

Brother is sick. Daddy is sick. And yesterday you started feeling warm. I gave you a dose of Tylenol and you slept fairly well through the night. Liam, however, did not. He sounded like a creaky door with each inhale and exhale.

So this morning when you woke up looking worse than last night, I decided might as well take you to the doctor if I am taking him to the med center. So I called both doctors at 8:30, and got him an appointment for 11:30. The special needs clinic office personnel told me that there was only one nurse returning calls, so it might be awhile before I heard back to see if there was an opening. Honey came over by 9:00a, but since I had decided showering was a necessity for me, we weren’t ready to leave yet. You had fallen back asleep and I left you for last minute. Once you woke up, it was clear you were not doing well at all. You were pale, lethargic, your fever was up and you sounded horrible. You coughed and sputtered the entire way into town. As we got closer (about 10:30) I decided you were more concerning than Liam, and needed to be seen first. Having not heard back from the nurse I gave the clinic a call. Before I could even explain your situation, she interrupted me to say, “Mom, now remember I TOLD you we only have one nurse between two clinics. You are just going to have to be patient.” Uh. No.

Me: Well, I am calling to see if it is going to be so long that I need to take her to the ER instead.
Her: Mom, I can’t make that decision for you. If you think she is that bad, then go ahead and take her. But we take calls based on urgency, so it might be awhile before you hear back.
Me: It’s urgent. I’ll take her to the ER.

Goodness. That really ticked me off. So since I was aggravated, I took you to the ER. Now, here’s the deal. Since your doctor is at TCH anyway, the ER is just the bottom level. It’s not really like, oh no, you were in the ER. Basically I just wanted someone to look at you right away, and I knew they would. Last time you had this exact same thing, we waited too long before going to the ER and you ended up in emergency surgery, and intubated for 4 days. I was determined to avoid that again. And I was just angry.

Honey drops us off and we head inside. They take us back right away and two nurses ask all the standard questions. You actually don’t look as rough there as you did at home, and I haven’t heard a single cough since we came inside, so I spend some time convincing them you really are sick. Your arms and legs are modelled (I have a feeling that is not how it is spelled) and that is what concerns them. I explain that it actually IS much worse than usual, but we do always expect some of that from you. Right away they take us to a room and a different nurse asks the same questions and takes notes. She is concerned with your modelling as well, and grabs a doctor to look at you. He checks your capillary refill time and it is three seconds. Not bad. He explains a trauma is on its way in and all hands will be on deck for that. They were just making sure you didn’t need immediate treatment before everyone was taken away.

As we wait, you have two big diarrhea diapers. And then feel all better. Seriously, all better. Talking. Smiling. Laughing. ROLLING from side to side. Audrey, you don’t usually roll on a good day. I always suspect BM’s have to do with these episodes, but I am not sure how to prove it. Anyway, after being there about 45 minutes, the nurse checks on us again and asks how I can tell you were lethargic since you can’t move that much anyway. I tell her it’s mainly just because I’m mom, but usually you are pretty engaged and interactive…sort of like right now. She agrees you look much better.


(Here you are..."sick".)


At this point, Liam is my main concern. So I explain to her how your brother is also sick in the waiting room, I need to get him to his appointment at 11:15, can I go now? No. They doctor had to check you out first. But, I reason with her, you don’t have fever, your 02 is 100%, you are active and happy, not coughing…there is no reason for us to stay. You are just taking up a room. This ER idea is backfiring.


I understand it is totally liability. I do. But what happens if we just leave? She said I would have to sign a waiver and they couldn’t stop me but they didn’t like it. I didn’t want that on our TCH “record” so I agreed to stay a bit. I called right away to reschedule Liam's appointment and immediately the doctor walked in. The nurse must have told her I was thinking about leaving.


I really liked the doctor. After having spent the first part of my time there convincing everyone you were sick, I spent the next ten minutes convincing her you weren’t. After going over your medical history, she agreed it was the right thing to bring you in, but that there was no reason for you to stay. So she would discharge us. What I didn’t know was that it would take another hour to get those papers. And only then because I opened our door and stood in the hallway, staring at the bank of nurses in front of our room. We finally walked out to where Honey had the car pulled up around 12:45. We didn’t make Liam’s appointment (it was rescheduled again for 2:30) but we had time to get some lunch.


Here is the kicker. As we were checking out, they did one last exam. Your temp was up 2 degrees. And as we walked outside, you started that coughing again. Oh, Audrey. What is it with you guys? As soon as we are in the vicinity of a doctor you miraculously feel better.

As frustrated as I was at times, TCH is an awesome place. I heard a knock while we waited in your room, and it was a lady with a nice little coffee cart offering free coffee to (most likely) scared and stressed parents. That's so thoughtful. And even though I was going crazy sitting in that room while you were fine and brother was sick, we probably still got in and out faster than if we had gone to the special needs clinic. Exhausted, our day wasn’t over…you can continue reading the saga HERE.

Tuesday, March 29, 2011

Taking Care of Business

We went to Dynamic Orthotics today, just the two of us. Liam is sick, so he stayed with Grammy. The purpose of today’s visit was to take care of our PMR checklist.

We had them tighten your night-time AFO’s and took measurements for the SPIO suit and Hensinger collar. Unfortunately, at this point it looks like the collar and TED stockings aren’t made in a size small enough for you. Mr. T is going to look for an alternative, but doesn’t sound too hopeful. We will see what he has come up with when we go back to get the SPIO suit in a couple weeks.

Monday, March 28, 2011

Cheers for Audrey!

You played in the "intelletainer" for a good 15 minutes or so today. No weight bearing, but you were actively trying to push buttons. Each time you played the music, Liam and I would cheer and clap. I was making dinner while you two played, so even if I got distracted and forgot to say "Yaaay!" your brother would remember. I enjoyed watching his face light up from the kitchen each time. And he practiced such restraint not pushing the buttons for you. He is proud of you when you do big kid things.

Thursday, March 17, 2011

Little Lady Leprechaun



Here you are in your St. Patrick's Day outfit. Look at these adorable socks your Aunt Shanna got for you! I know it's the 18th, but since you didn't get to wear it yesterday, you are wearing it today.

This is the only picture we snapped before you got sick at the dog park. (Oh yeah. You started throwing up again two days ago. You made it a total of 14 days.) Poor little shnook.

Wednesday, March 16, 2011

Priceless

Audrey. We almost had a major tragedy. We almost lost ALL our pictures. I mean ALL 19,000 if them. It is a long story how, but I deleted every single one off our computer.

But Daddy is our hero. Through the Holy Spirit’s prompting I’m sure, he started backing up our computer files through Mozy about a month ago. So with only a little work we were able to get them all back. Best $5 bucks a month we could have spent. I would have been devastated. The pictures of our little family are beyond value to me.

Tuesday, March 15, 2011

PMR Checklist

Today was our PMR appointment with Dr. W. This is the course of action we have decided on for now.

*Call The Wheelchair Shop to have your seat adjusted. We discovered your tailbone goes towards the left. So while scoliosis isn’t a problem that needs to be addressed at this point, you look crooked when you sit. This can be fixed by leveling your seat pad accordingly. We also need him to adjust your stander.
*Take a script to Dynamic Orthotics for a hensinger collar (for use in chair to bring head forward), TED stockings (for circulation in feet/legs), a SPIO suit (compression for body awareness and support).
*Gradually shave down incline of shoes as you adjust.
*Look into aquatic therapy and massage therapy.
*Increase your diazepam to 1 ml, twice a day.
*Get a speech eval so that we can seriously pursue switches as your primary communication device.
*Use kenesio tape for positioning of feet and wrists.

I left the doctor with a thick stack of papers and what I felt like I was a huge to-do list. But it looks much more manageable written out like this.

She also explained to me that you have dystonia. It is a neurological disorder that affects muscle movement. No treatment exists other than positioning. But it explains some of your odd movements and behaviors. What I thought was seizures 18 months ago (which led us to discovering your hydrocephalus) is perfectly explained by dystonia. Just good to know.

I am also glad to know about your tailbone. You have always had such a…different….little bottom. During the appointment I mentioned your tailbone to Dr. W, and she sort of rolled her eyes and said, “Ahh, the tailbone. Parents are always worried about the tailbone, and it is almost always fine.”

But in the usual Audrey fashion, when she took a look she had to step back a moment, looked again, repositioned you, and then said, “Huh. This is interesting.” Going toward the left makes sense—now we just have to figure out how to make you sit on your sitting bones, instead of you crooked tailbone.

There is never a dull doctor’s visit with you Missy Moo, that is for certain. Thanks for always being such a trooper. You never complain about having to go into the Med Center, when you have every reason to. Maybe it’s because you know that we almost always make progress whenever we visit a doctor. Or maybe it’s just because you are the sweetest girl ever. Probably that one.

Early Birds

Dear Audrey & Liam—

Please go back to sleep. It is 6:00am which is really more like 5:00am. With the time change, nobody should be awake before 7:00.

Love,
Mom

Monday, March 14, 2011

Days Without Vomit: 12!

Since the Elecare makes you gassy, I have been venting you more often. I think that is the key.

Time will tell.

Thursday, March 10, 2011

Exhausting

That is the only way to describe today. I got brave after taking you to the doctor by myself Tuesday, and so tried again. Only this time with Brother in tow. Oh dear.

We had a 9:30 appointment first, so we loaded up and were out the door pretty close to 8:30. Made it there no problem and were called to the back quickly. Mr. T brought out the new AFO’s and tried them on. He wasn’t happy with the left, and said he could have a new one ready by the time we were done with our next appointment. Deal.

So then we headed down Main to TCH for genetics. Nothing really discovered there, although he asked many questions about your recent behavioral changes—most notably the fussiness. He thinks GI holds the answer to that. Right now I blame teeth.

Back to Dynamic Orthotics for your new, new, NEW AFO’s. They fit great! Whoo-hoo! He took a look at your back since I have been considering a back brace. Mr. T thought one was appropriate, and found the shape of your spine concerning. As someone who works with kids like you often, that doesn’t sound good. He gave me an idea of what he thought was wrong, but since we see PMR next week I will wait and explain more then.

We arrived home about 2:30. Since neither of you shnooks took a moment’s nap throughout the day, we all hit our beds hard. And didn’t even consider waking up until 6:00. This was just fine because Daddy had a late meeting and no dinner needed to be made.

Overall, you both were amazingly well behaved. You fussed quite a bit at the first appointment, but did better as the day went on. Liam started out great, but was pretty much sick of his day long captivity to either the car seat or stroller by the last appointment. Y’all are great kids. Even still. That wore me out.

Now I need to begin packing for tomorrow’s trip to Austin. Sigh.

Wednesday, March 9, 2011

What A Production!


I am SO impressed!! I set up Tom Cat (as we affectionately refer to him) next to you in your bed while I made Liam's dinner. When I came back, I found an email composed with an attachment. I deleted out of it, not knowing what it was. It then took me to the Talking Tom screen and gave me several options including Facebook, email or YouTube. I didn't know what all that was for, so I hit the only button that made sense--play. And then this video started. That means you pressed record, did all this talking and punching, and then tried to email it. You almost sent me an email Audrey! After making a movie! I guess you wanted to make sure I saw your accomplishment.

In the 45 seconds this video plays, you did some good talking and tapping. I think it shows just how much switch toys will play into your future.

Tom Cat does come with emotional hazards. If the phone rings during playtime, it is sure to induce tears. And it never fails to ring.

Tuesday, March 8, 2011

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.

Friday, March 4, 2011

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.

Tuesday, March 1, 2011

Audrey Armstrong

video

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.