What to do for the PKU

We frequently get questions concerning PKU, due to its rarity and the oddness of it. I thought pictures might help, so I photographed the processes involved in Adam’s PKU related care.

Daily routine: Administer the medicine.

First I have to cut his medicine pills in half, due to the fact that he only requires a half dosage a day. Before we got the pill cutter we were using a knife, which obviously has a larger margin for error, and with such expensive pills, this was the preferable option. 

I then put that half pill into the mortar and pestle and grind it into a fine powder. 

As you can see, this medicine stains everything deep yellow. We have learned to administer it just before or after a bath, when we have yet to put an outfit on him. Even his spit up will stain his blankets yellow if it's within an hour or so of having been administered. 

Then we add a wee bit of water. I've now started sucking up the water into the syringe first, so I have an exact amount, THEN I put it into the mortar. This prevents accidentally getting too much water and having to give the poor kid numerous syringes... 

After shooting the measured water from the syringe into the mortar, I mix it with the powder until it dissolves. Then I suck it all back into the syringe. 

I attempt to administer the medicine around the same time every day, however we are often very busy and our schedule does not always allow us to be at home during that time. As such, in the instances we won't be home, I suck it up into the syringe and place it into a small tupperware. There it travels quite nicely and fits well in the diaper bag, ready to pulled out when the time finally arrives. 

Here I am also practicing my photography skills (I joined the photography club!) I am focusing on a close object and blurring the background for effect. This also shows the daily amount Adam receives. He's gotten quite used to it and the process is much quicker now that he expects the taste.

Weekly Routine: Draw Blood

A device containing a needle for heel
sticks bottom right, and the sheet with the
circles at top we are supposed to fill with his blood.

         Yes, you read that correctly. One of the more recent developments in our care for Adam. At our last visit to the Padova hospital, they decided to show us how to take the blood sample at home so it could be mailed in, allowing us to skip the frequent, long drives and days spent waiting at the lab at Padova. I liked the idea of less travel to Padova, however I was not fond of having to draw the blood ourselves. They gave us a few starter tools and then said we could get the rest of the tools from our lab on base. And when I say they showed us how to take the blood sample, I mean they talked us through it, neither the nurses or my hubby or I actually drew blood, so it was not a hands on learning or a demo, though I had seen it done many times before.      
           When I left I was still rather surprised. They are letting us take BLOOD samples at home? You can send blood IN THE MAIL??? Who knew. I didn't feel like this was something we could get away with in the states...
          After discussing it with the pediatrician on base, we went over to the lab and asked for the supplies needed, heel sticks and bio hazard bags and such. The lab technician commented on how they had never received such an odd request nor heard of this being done before. We replied that we, similarly, had not heard of doing such a thing before either.
        Every week we are supposed to take Adam's blood and mail it in. My hubby and I decided to designate Saturdays as the given day we would do this. When the first Saturday we were supposed to draw blood rolled around, I made a blood drawing station on the washer and dryer in our bathroom. I laid down a towel for Adam, and set up all of the supplies my DH would need. I didn't want to be a part of it, and my hubby was fine with that. We had seen the nurses do it by themselves and he figured he could too. I handed him the baby and walked away. After some time and a few good screams later, he opened the bathroom door and declared he needed my assistance.

A Heel Warmer used to encourage blood flow.

           I entered the bathroom to find a rather distressed baby, a blood speckled towel, and several used test sheets. The test sheets are very particular in that you must acquire enough blood to seep through the thick paper and can be visible on the backside. However you must be careful not to let the blood come out of the dotted line. They were very clear about us not sending in any test samples that were not in the lines. Getting the blood into these specifications is difficult, and my hubby's first few attempts failed as he needed more practice. He asked me to hold down the baby while he attempted it again on a new one.
          I held the poor squirming kid down while my hubby squeezed his heel and carefully attempted to get the blood into the parameters designated. Eventually we were successful, and successive weeks of blood drawing have improved from the first.

We then put on a cotton ball and bandage wrap until bleeding stops.  

            The test sheet is placed into a Biohazard bag, which is then placed into a regular mailing envelope and sent to the Padova hospital. (I then got to learn how to navigate the Italian post office. That was an interesting experience... but I now know how to work their post versus the American style post office they provide us on the base) Once at the hospital, the blood is evaluated and they only contact us if there is a problem with the levels. So far so good!
          The blood drawing is an experience to be sure, but all parents must play nurse to their children in some fashion. Some parents may be fortunate enough to get by with just band aids and hydrogen peroxide on their medical care resume. Our medical requirements extend a little further than that, but we're okay with it. It's all in the job description and we welcome every new experience that adds to our learning and understanding. 

Driving in Italy - Part 1: Getting Started

This blog may be rather dry to some, as I'm kind of addressing it as though I were informing another military spouse of all the awesome processes they'll have to go through, so I'll understand if you skip to the pictures or another post. But I know reading posts like this before I came abroad greatly helped inform me about what to do and expect, so now I'm paying it forward. Here goes...

My DH and I were smart before moving here, and if there happen to be any military wives reading this who are about to PCS overseas, I highly recommend you do what we did. We shipped our car ridiculously early. Lol, or so it seemed at the time. Our car shipped off on November 5^th when we were back at Luke AFB. We knew we wouldn’t be arriving in Italy until January 3^rd, and not having a vehicle in the states for two months was often rather difficult. However, it takes about two months for things to reach Italy (like your car or household goods shipment).

Our car arrived just before the end of the year, so it was ready to be picked up as soon as we could register it and get our licenses. This was a huge freedom (and believe me, after a few long days of briefings and paperwork, you’ll be itching to get off base and see Italy). It also allowed us to start house hunting just days after arriving. We were able to have the comfort of our own vehicle while other families were forced to rent a vehicle until theirs came (and a car rental is not something the military will reimburse you for, unlike your reimbursements for temporary lodging and food).

            We made due for the two months without a car back in the states, and despite being 6 and 7 months pregnant, I would walk or bike to base, get groceries and goods, stuff them in my back pack, and carry them home. It was great exercise! We also had some very kind friends who would occasionally loan us their car if we had a doctor appointment or something else that was too far for us to bike to. In my opinion, it’s sooo much better to have your own car ready and waiting when you arrive at your new station than to be in a new place and also driving and paying for a rental car while waiting for yours to show. All right, enough about that. Now I will inform you what the process was like to get a drivers license and what it’s like to drive on Italian streets. 

Step 1: The Driver's License

                      Troy was able to get his license the day after we arrived. They had a "Jumpstart" program for airmen and they helped him get on the process. It was good to get it out of the way, though we couldn't get our car until the following Tuesday anyway. He came home and gave me the necessary links I would need to study for the drivers test. For those coming to Aviano here's the link: http://www.31fss.com/afrc/web/inbound-driving.html   On the top right of the page you can read through the study guide and also study the various road signs. Then you can click on the top link and take the two tests. One is a multiple choice test about the rules of the road/driving, and the other is a 50 question test on the road signs alone. I took a screen shot (see below) of the chart presented on the test.  

          

            As you can see, there are exactly 50 sign options (though you have 118 signs to study on the study pamphlet) and each option is only used once during the test. So if you think one sign can apply to two questions, you're wrong, try again. The chart will stay the same and you simply click on the sign that correctly answers the question. The test can take a long time as you have to search the chart for the sign you're looking for. In order to be granted a license you must pass both the multiple choice test and the road signs test with 100%. However don't worry if you don't get a perfect score your first time, you will be given successive chances to take the tests.

           Looking at the chart, you can probably already guess what some of the signs mean without having done any studying. The large "P" in the top row is obviously a sign for parking and two over to the right from that is a sign that anyone could guess to mean, "Don't come this way!". However not all signs are so self explanatory. In the second row you can see there are two similar signs, both blue with a white arrow pointing up. However, one is a round sign while the other is square. The round one means you must take that street and that that is the mandatory direction of travel. (After some driving I have found that there is usually the red "don't go this way" sign nearby on a street they don't want you to enter. The square sign with the arrow indicates a one-way street only.

       I recommend printing the PDF file of the road signs so you can have it all right in front of you for the test. That way it has the exact wording/explanation under each sign, as some are similar in meaning. You could also keep the tab open on the computer and flip from that to the test, but that little trick of CTRL + F won't work to let you search through the document, and I found it much harder to scroll through the pages of bright signs than to look down at the sheet of them in front of me, but to each his own. 

      After passing both tests with 100%, they will email you a certificate of completion which you will print and later give to proper authorities. My "proper authorities" were at the Right Start program the following week. On Monday they had us fill out a basic information sheet, hair, eye color, weight, etc. On the following day, Tuesday, you hand in the print out of your completed test and they will give you your license. Here's what my driver's license looks like. I was surprised they required no photo ID on it or patterns or shimmery colors to make it difficult to copy/fake, but it's supposed to be a supplement to your license from the states, which does have a photo ID. (so both must be presented if you're pulled over)

    

Step 2: Registering the Car

Now to begin the lengthy process of getting your car registered… In order to get your car registered, you must first have your license. We’ve got that, check. Next, go to the warehouse where your car was shipped. (You should be have gotten an email when your car arrived). Here they will give you the paperwork saying that yes your car has in fact been delivered and is waiting for you. It will have your vin # and other such information on it.

             Next, you must get a license plate. You can get these from the same people who processed your licenses at Pass and Registration. You give them the paperwork from the warehouse as well as proof of your insurance. (For Italy I believe only USAA and Geico offer the type of insurance needed) They will give you your new plate numbers, which you send to the insurance company. They will send you the updated insurance card by emailing it directly to the pass and registration office. Then the Pass and Registration office will print the card for you and give you the actual plates. The Insurance cards here are small and white and must be displayed in your front windshield at all times. Below you can see the plates on our car. The plates in Italy are much longer than the plates in the States. I should have gotten a picture before, when we had long pieces of blue tape keeping our plate on until we were able to buy a plate adaptor bracket at the store to fit the long plate and different screw holes.

 

Then you go to the foreign nationals at Pass and Registration and pay road tax (since we only have one car it was about $5). Then they will register your car. You take this information back to the warehouse where your car was shipped and do an inspection of your car and put the plates on. If you need to file a claim, this is the time to do so. We had to file a claim as we had a damaged hubcab. The first time my DH stopped at the warehouse he discovered we were missing three hubcabs. My first thought was, “Shoot, I didn’t take pictures of the car!”. Before leaving AZ, military spouses had told me the dangers of shipping and traveling, that things would get broken and how difficult it was to file claims if you had no proof that they were the ones who damaged it. They advised having a detailed inventory of everything, so I spent days meticulously inventorying all of our possessions, complete with pictures, dimensions, serial numbers, you name it. I realized in that moment, that I had forgotten the car, really the most expensive thing we own and I failed to document its condition.

Thankfully the three hubcabs were found in the trunk and only one was damaged. (It was missing a huge chunk, not sure how that happens…) They also agreed the fault was theirs and reimbursed us for it. 

Alright, almost done registering! Within 15 days of having the car, you must get it inspected and take that passing inspection back to Pass and Registration. (If you don’t, there are heavy fines!) We did ours the same day. We didn’t pass at first because we forgot some essentials. In Italy, you are required to have a reflective vest and a reflective triangle road sign. You are required to render assistance if you witness something or there’s an animal on the side of the road. So you pull over, put on the vest, and place the triangle a distance behind the car to warn people to slow down. So we had to go and purchase those before passing. We did this and were fully registered by Tuesday evening. Woohoo! 

Step 3: Hit the Road!!!

         We were now good to drive the streets of Italy! I will detail Italian driving and our experiences in part 2.