And that's how the week has gone...

Saturday we got a call from the pharmacy that a script was ready. Very happy that it was ready, Michael went to pick it up. You see, James' reflux med had to be ordered, so on the 7th when it was filled the first time, they gave us only 5 pills and said they'd let us know when the rest came in. We had a couple left before then, so the five lasted until the 14th. Now it was the 17th. Already see a part of the problem?

 When Michael got there, it wasn't that script that was in. In fact, when he insisted that they really should be able to fill that script now because James had already MISSED meds for 2 days on a med set to auto- refill, they looked it up and found that that med had been backordered not just to the distributor, but to the manufacturer. In other words, they wouldn't be getting it again for a very long time. See problem number 2?

After much discussion, several phone calls to me, and eventually with our insurance company, a plan was put in place and our pharmacy generously asked one of their other stores to give us three pills of the name brand med for free to get us over until Monday when we could again address the problem, but during business hours. We are thankful that they did that! It did take a good 90 minutes of Michael's time and a trip to a second pharmacy, but problem temporarily solved.

 We also found that another unaffiliated pharmacy in town had some in stock, and it was enough to fill the order. Our pharmacy transferred the script and I went to pick it up on Monday evening. I pulled in to the drive through and our interaction went something like this:
 "I'm here to pick up for James Cornish."
 "It says here that doctor prior authorization is required."
 "Really? For a generic of this med?"
 "No, it says name brand required, medically necessary on this script that was transferred."
 "I'm sorry, but that's not right. Maybe in the midst of trying to get this filled someone wrote it in, but he's been on the generic for months. Can you fill it for the generic?"
"Yes, oh, wait, it says prior authorization needed for the generic too. Can you come inside?"

And then, I waited for another 20 or so minutes while they tried to figure things out. I explained that we'd already received a partial fill of 5 and it was filled on the 7th. I said that there had been a question about using name brand bc of the generic being out of availability but that our insurance wouldn't be happy with that, which is why we transferred the prescription to YOU, because you had the generic in stock. I even explained about the 3 'free' pills, and that it is likely why the name brand thing was written on the script, because they may have noted it that way so the other pharmacy would give my husband the 3 name brand pills to get through the weekend.

In the end of what turned out to be a 90 minute venture including a call to our previous pharmacy to make sure they backed out their order since insurance was still fighting the refill... we learned that the pharmacy tech was trying to get the order approved for 30 pills. *ahem* We filled 5 already... remember? Insurance would only fill 25 more. And they did. No questions asked. *sigh*

The next day I took Wesley to the GI and had the script changed so he can get tablets of double the strength, and we will split them ourselves, since those are still readily available from the manufacturer and distributor.
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 On Tuesday at the doctor for Wesley we learned he has gained FOUR INCHES in 6 months! And... about 2.5lbs. Now, before we jump up and down about the height and scream HURRAH! like I wanted to initially... reality must be discussed. Wesley hasn't been to this doctor since before his hip surgery, and likely at least 2.5 inches of that 'height gained' (notice I didn't say he GREW?) is likely from the orthopedic doctor bringing his legs down into closer alignment with his hips. I'm not positive, but I'm pretty sure he gained some height during that surgery simply because of the moving of those bones...

 As for the weight, well, it's pretty disappointing. He is still scrawny, and he is on pretty high calorie EVERYTHING.

 He drinks a combination of Pediasure and a blended diet with at least 30 calories per ounce in each, and he also eats whatever he can at meals. He just eats VERY SLOWLY, and takes a really long time to get it down. He's learned to finger feed (have I mentioned that before? hmm...) and LIKES to eat! But he still doesn't get much down so it's mostly drinks. He's also army crawling all over, playing for several hours a day, and sitting up for a majority of the day. He has very high tone, so even just staying still he is burning more calories than you or I.

 We are going to do a scope to be sure that he's not got other issues going on. We also have a neurology appointment on Monday where we will be discussing putting him on a med that may help reduce some of his spasticity. It won't be a miracle drug, but the goal isn't miracles, it's quality of life. In 4 months we will go back to GI and see whether the scope identified anything, and whether the other med helps him increase his food intake (if high tone in the mouth is part of the difficulty with eating, he may be able to eat more!). Then, we will discuss, once again, the possibility of a g-tube simply for him to get necessary calories. At that point, it would mean he could eat for pleasure and not be forced to eat a certain minimum each day. 
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 Wednesday is today. I brought 6 kids to school and Michael's mom kept the two younger girls at our house. I went to the park and worked on the last day of my Bible study for this week then went to the class Aleksa, Wesley, and Emma are in to observe. It was an eye opening time that I will try to share more about later, but for now I need to talk to their teacher to clarify some things and see what we can do to help improve things.

 I will say, though, that Aleksa's behavior at school is BAD. Emma, too, has gone down hill. It appears that Emma's behavior may be a direct result of having less available attention for herself... which makes total sense, since Aleksa is requiring a LOT. I observed from a window, not within the classroom, so their behaviors wouldn't be affected by my presence. Before leaving I did take Aleksa aside and tell her to straighten up (of course in kid words!) and sent her back in, then watched another few minutes before leaving.

Tuesday when dropping Wesley off (after the GI) Aleksa saw me, and after that her day went downhill FAST. Today she came home and her behavior chart showed marked improvement in the afternoon. Maybe she wasn't sure if Mom was going to show up out of the pod for the rest of the day? Who knows! But at least she did have a bit better afternoon... She still came home with her hair down, something we have been working VERY hard on.
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 Our dryer is still broken. I think I mentioned it last week, bringing laundry back and forth to my parents' house to have it dried... We called and had someone come out to fix it on Friday, however they'd ordered the wrong part and couldn't do it.

 They checked on the right part and it... like James' med... was backordered to the manufacturer as well! So, no new part. No fix. Nothing.

We called the store where we bought the dryer and asked them again about having their team fix it, whether they could get the part. We'd inquired earlier but the 'local' company was the same price so we'd decided to go with them. (Yes, the same company that ordered the wrong part back a year and a bit ago when we BOUGHT the washer and dryer when they were supposed to order the part to convert it to propane... and we had to wait an extra couple weeks for them to get it...).

 So, the store then says "wait, you ordered a service agreement" Which they had said NO, we hadn't, last week when we called. Well... we thought we'd only bought it on the Washer, but yay, good for us. They were scheduled to come out today while Michael's mom was here. Mike called me this afternoon to fill me in on the day's adventure.

 The man called his mom and said "I'm on the way to fix the washer." She replied that the washer isn't broken, but the dryer was, and come on out. He then talked to Michael and in the mix of things, we learned that he WAS coming to service the washer, the one with the service agreement on it. YIKES. So, dryer has no service plan. Instead, Michael was told to cancel the appointment and do some other type of service plan that would be better than the cost of the repair visit and the parts to fix it. I didn't follow so well, but the idea was-- it is considerably less expensive but will take more time.

 WHATEVER. Just fix it! So, as I speak there are dish towels lining the baby gate and a bath mat on the wagon out front all drying. Michael's mom just headed home with a basket of kids' laundry for us and I've now dried at least a dozen loads at my parents' house. Friday SOMEONE will come to the house and look at the dryer BEFORE they can order the part (that someone else has already said is definitely the problem). THEN, they can order the part... if they can get it and it isn't backordered and out of stock for them too. *sigh*
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 After school today I dropped Emma and Micah off with my parents and Kristopher and Wesley off at the house with Michael's mom and bee lined it down to a doctor's visit for James (with Aleksa too, and the little girls were still at the house since morning). I got there and the lady at the desk said "you're here to pick up, right?" Hmm... pick up... Yes, I wanted to pick up glasses, but James also had a pulmonology appointment at 3:15 that I was hurrying to get to...

No, apparently the doctor used to come twice a month and just changed to coming once a month. It must not have been noted to me, because 2 weeks ago I got a reminder slip about this appointment and it was in my calendar. Maybe I should have been surprised when I didn't get a reminder call 48 hours in advance, but with the week we've had and the fact that they've changed their way of doing reminders twice in the last 6 months... I didn't happen to notice. The lady at the desk said "oops!" that they hadn't called to let me know it had changed... Ah... well... 

All wasn't for naught, and we FINALLY got a new pair of glasses for James! We've been using his "backup" pair since March when he broke his first pair. Then, the pair he broke was backordered for 3 months, then discontinued. So we picked another pair, but the temples couldn't be shortened enough for them to fit because they were 'springy' material and it wasn't possible. Then, the third pair we picked out was discontinued in the color we'd chosen and FINALLY... I said GO WITH THE OTHER COLOR!! As long as it wasn't the cute lavendar that we tried on in the office.

 Today, only six months later, we finally have a pair of glasses back in our hands. Finally...

And so I began the 40 minute drive back home. His appointment had been rescheduled for 2 weeks out. 

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 Can you tell why I haven't blogged in a few days?? :) :) In the great scheme of things, we are blessed beyond measure and abundantly grateful that we have had a good week, albeit a frustrating one :)

I'll be at the elementary school all day tomorrow while the girls are at their church program. It's Height and Weight screening day for several grades and then it's 2nd grade "read with your child" time in the afternoon. Surely all of that is safe from things like this week has brought... right?? :) :)

Friday aside from the dryer being looked at (again), we also have James' IEP review and we have Lynae's 2 year checkup. What a week! :)