Wednesday, October 6, 2010

Our Crazy Trip to Florida

This was the craziest trip I've even taken, hands down. Scroll to the bolded section if you just want to hear about our visit with Dr. Miller. Otherwise, here goes, it's the longest post in history...

First of all, deciding to travel by myself (I insisted) with Dean to Florida while pregnant was just a bad idea. I'm never traveling alone on this trip again! We were trying to conserve vacation days and so Bob stayed back and my mom watched Cole.

Anyway, I shlepped (wow, spell check let me get away with that one!) two carry-on bags, Dean in the stroller, my rolling duffle and Dean's giant Britax carseat through the airport. I had a system down that probably made us look ridiculous, but it worked out. It also meant I had to carry all but the duffle on and off the plane as well as with me to the bathroom every time I had to go (remember, I'm pregnant, so that was a lot :)). There were always people to help me in the airport with getting the carseat, two carry-ons and a certain little boy onto and off the plane, but it was a challenge. The legroom on US Airways is really not great and so Dean was practically vertical while in his carseat instead of reclined. This meant that whenever he fell asleep, his head would fall straight forward and he would wake him. I had to hold his head the whole way from Charlottesville to Charlotte, and then later on from Gainesville to Charlotte and Charlotte to Charlottesville. I sat there looking at my sweet boy and thought about all the silly things we mommies do just to make our kids happy - even holding up their heads. :)

HIGHLIGHT: Dean LOVED the airport. He was so excited about all the people and found a people-mover at the Charlotte airport to practice pulling to stand. He also liked the rocking chairs at the Charlottesville airport.

Umm, cuteness, much? :)

Look Ma, one hand!

 Ellie-Bel, the elephant he's had since the NICU (thanks, Victoria :)). They're BFFs.

And his new trick and favorite move seems to be Downward Dog. I love it!!!

LOVES his touchy-feely "That's Not My Dinosaur" book! Dean loves any books that have tactile components. We read this one all the time. :)

On the flight from Charlottesville to Charlotte, I stood up and went to turn around to change my footing. Apparently my foot was wedged under the carry-on below me and the top half of my leg turned while the bottom didn't. I felt some sort of popping or tearing, which obviously killed. I limped through the next airport.

Dean and I finally get to Gainesville and we go to the Gainesville Hotel and Conference Center. Check out the website HERE. Looks nice, huh? You'd think a conference center would be a place people would want to take other people. Here's the note I just wrote to them. It'll give you an idea of what it was like:

My 17-month-old son and I recently stayed at your hotel. We were planning on staying for two nights, but we ended up leaving after one. The hotel was disgusting and definitely *not* the three stars that we advertised. My son crawled on the carpet for about 10 minutes and his knees and socks were BLACK from the dirt on the carpet. There was black mold on the bathroom ceiling, one of the locks on the door was broken, the curtains were filthy, the tub was dirty, we had only one bath towel (which had mold spots on it, too), and the walls were dirty. We were originally placed in another room where I was told there was a fridge and there was not (we then switched), so I had the opportunity to see that other rooms were like ours. I felt unsafe and dirty in your hotel. I was refunded for the night that we were originally booked to stay and then left early, but I would like to be refunded for the night that we did stay as well. This website is a misrepresentation of your establishment.

Allison Shenk

I didn't mention that I also broke out on my entire face and arms from the soap in our room (yes, I showered there - shudder). Here are pictures taken significantly after my face calmed down - it was worse!

Horrible. My eyelids and cheeks in particular still burn and itch like no one's business. Sigh.

The Mama Bear in me got panicky and wanted OUT of that hotel after the first night. I was texting with a friend from a mom's message board that I've been on for years. The great thing about message boards is that you meet people from all over the place! We were planning on getting together with our kiddos for lunch on Tuesday, but as I texted her regarding the woes of our hotel, she offered for us to come over and stay at her house. It was going to be about a two-hour drive, but I was desperate. I'm not even sure if Jenn was 100% serious, but I took her up on it. We made an evening drive to St. Augustine. Crazy!

On the way, I noticed the speed limits changed frequently and there were lots of signs about limits being strictly enforced. Fine. I decided to pay extra attention. At one point, a zone changed from 65 to 45 rather abruptly, so I made note to slow down. Apparently, I didn't do it quickly enough, and I saw flashing lights in my rearview mirror. :( I got a $194 speeding ticket AND 3 points on my license if I don't complete an online Driver Improvement Course. I did what any good, hormonal, stressed-out mommy would do: I bawled. And bawled. And... bawled. I felt like a moron for doing so, but I just couldn't even help it. Here I was trying to escape from that nasty hotel and this is what I get. Sigh.

Backing up a bit. Our appointment with Dr. Miller and others at the PWS clinic! The point of going on this crazy trip! We arrived on time early Monday and had to have our kiddos fasting for a metabolic test. Dean and I arrived first and got to chat for a bit with Dr. Miller while the others came. As predicted, the first thing she wanted to do was to hug him. :) She couldn't believe how great Dean looked since a year ago (obviously she's seen pictures, but we all know that in-person is the best :)). This was nice to hear! We thought so, too. :) We chatted about things and the other families arrived. We proceeded to the research center where each kid was measured, weighed, and then put in a hood that measured resting metabolism. Dean was fascinated by the hood. lol

Dean pretty much never has an appetite from what we can tell. He RARELY tells us that he wants food and only recently has cared about whether he's done or not. But by 9 when this was all over and he was ready to eat, he was cranky. Mind you he normally gets milk at 6 and then breakfast at 7:45, so he was a little behind!

We met for Q&A with Dr. Miller, Christy (the dietitian), Dr. Wagner (sleep expert/pulmonologist), and Sara Plager (speech-language pathologist). I love round-table discussions because it's helpful to hear other parents' questions. Then some kids went off for a DEXA scan (measures body composition, I believe. We skipped it this year because I want to hold off on non-essential x-rays!) and Dean and I stayed back to nap and eat lunch a bit later.

We met with Dr. Miller and Christy over lunch and discussed more specifically about Dean. Dr. Miller's main concern was Dean's speech, and I agree about that. We discussed the need (also with Sara Plager) for more intensive speech therapy beyond a "wait-and-see" approach and she reinforced all that we were doing at home with him, too. Both Dr. Miller and Christy were concerned that Dean lost weight from the previous month, not just because of the actual weight loss, but because he dropped in the percentiles quite a bit. This was a bit frightening, but Dean has been more active especially in the past month and has actually seemed a bit hungrier. His IGF-1 levels are still low (even at 0.6 mg/day! This kid makes pretty much no hGH on his own :( ), so usually she would bump up his dose of GH, but she was nervous to do that with his weight loss (since more GH would also rev his metabolism). We discussed how to add more appropriate calories to Dean's diet and also about his resistance to drinking milk. Dean will drink the milk if we practically force him (which I *hate* doing) but otherwise he will drink ZERO liquids on his own.

Dean's IGF-1 levels still being low also means that he's not yet in phase 2A (where metabolism starts to shift and appetite will eventually increase). This is good, since we'll stay in 1B as long as PWS will let us. :) She said that sometimes they see in kids a weight loss as some weird pre-2A phase, but she's not sure if that's what's happening with Dean. So the plan is to get some more calories into him and see what happens by next month. We can increase his GH (which he needs) as long as he shows weight gain in the next month. Crazy that this is the exact opposite problem we'll likely encounter for most of the rest of his life!

We discussed supplements and she watched how Dean's eyes roll behind his head and how sleepy he gets when he eats. We both recognized this as a sign of fatigue that occurs just around eating time; right after you take him out of the highchair, Dean perks up and has tons of energy. Dr. Miller said she can't prove it but swears that this is a carnitine deficiency issue in kids with PWS. She recommended giving him his full dose of carnitine in the morning only and seeing if that makes a difference. I'm eager to try this and see if it helps.

Dr. Miller also did an exam to make sure that Dean's man parts are all still where they need to be. All is well, which is nice to have that behind us! I again voiced my concerns about his degree of hypotonia that persists and Dr. Miller reassured me again that the degree of hypotonia does not correlate with how Dean will do later on. This is always good to hear. She felt that his legs were much stronger but that his trunk is still weak. This is what Dean's PT says as well. Dr. Miller recommended a baby gymnastics class to strengthen his trunk until he's old enough for hippotherapy. She said other than the typical OT, PT, and speech therapies, hippotherapy is the one they most recommend next because of how it helps with balance and developing trunk strength.

We laughed about Dean's smiley disposition, his froggy-hop crawl, and his budding personality. It was nice to hear that she felt Dean looked great and was doing well. I didn't feel the relief that I was expecting to feel, but I think that's because I know that no one is ever "safe" with this syndrome. There are plenty of issues that can pop up at any time, so all that we know today is truly just what we know for today. I'm learning to settle into what this means.

I was also trying (remember, hormones) not to freak out about the weight loss issue. Of course my mind starts going towards crazy thoughts like, "What if Dean has cancer and that's why he's losing weight?," and at one moment I had myself convinced of it. C'mon, brain! But Dean is seemingly otherwise happy, healthy, and alert, so I doubt it's the case. And he did grow length-wise, quite a bit. He is now 11.1 kg and 33.5" long! Long boy. :) So that was the visit! Well worth it to see her each year and have her and her colleagues' eyes on our little boy. The docs at UVa think we're nuts for going all the way to Florida to see a doctor - we get the line, "You know, we *do* have endocrinologists here...," but they just don't get it. I try to tell them that we go to see Dr. Miller because she has overwhelming experience with PWS, is on the cutting edge of research with the syndrome, and really, just rocks. It is worth it!!

So back to our trip to St. Augustine. Jenn and her family were so unbelievably welcoming and wonderful to us, and it was good to spend extra time with them outside of the lunch we had planned. Even though Dean broke one of their dishes (leave no dish unattended!), they were wonderful. Here's a picture of Jenn, Dean, and I.

We were looking into the wind, hence Dean's face. lol I'm so thankful for this HIGHLIGHT in our trip as well. We needed a bright spot! Anyway, we made the drive back to Gainesville (not without some GPS craziness), got on our planes, and are safely back home. I have never been so excited to be HOME!


CaneWife said...

I'm so glad the trip was (mostly) a success. I was stunned at how much Dean has grown up (someone needs to update her siggy picture, methinks)and I'm so glad we got to spend some time together! Hope you had a safe trip back and that Dean's progress continues in a positive direction :)

Mairead Elizabeth Hickok said...

I can NOT believe the hotel/ticket disasters! I am so glad Jenn was there to rescue you so that you and Dean could have a fun part to your trip. And. Dr. Miller sounds totally worth the whole escapade!

Anonymous said...

You're not crazy to travel there. I think it is so important for you to see an expert. I have a friend who's making the trip to Florida from Scandinavia with her little PWS angel! The boys are looking so cute. I enjoy your blog, Ali. Congrats on another beautiful son (under construction). Kate

V.M.H.D said...

Oh Ali, what insanity. I've travelled alone with Sammy D and it was a similar comedy of horrific errors that are still not really funny. Among other things, she threw up ALL over me and the other nice people in our row. Think Nickelodeon slimed. (Don't they do that anymore??) Anyway....hearts and kudos to you. Glad it was worthwhile and that Dean still likes his elefante. Miss you guys around here. Come and visit soon...? A lot to ask after that journey, I know!

Andrés Acosta said...

I only half way through reading & I have to stop for now to put Andres to bed, but holy crap!!! I cannot believe that hotel.

And holy crap, when your kid starts to do something he really gets it! His pulling to stand is amazing.

Kevin said...

Well, the activities of the reason you traveled went well, but I think you really got piled on. I've encountered Hotel H*** too and I think that you have me beat. The rash from the soap must have been the straw after the last. I have no idea how you could have survived moving the luggage all over the South with Dean having to little tone. And then there was the revenuer. Let's face it, this is all about money and nothing else. I'm sorry that you had to be the one who got taxed.

Ali Foley Shenk said...

Perla, yes, when Dean gets it, he gets it! That's because the leading-up to that skill has usually been nice and loooooooooong and drawn out.

Uncle K, I agree, the officer I think was just looking to get some revenue for the state. Sigh. It was a bummer. And yeah, that hotel was a serious pit. I neglected to mention that there were also some shady characters loitering in the parking lot. Ugh.

Andrés Acosta said...

Well, I read the rest of it and your comment..

Evan seems to do things quickly but then doesn't progresses from that point slowly, i.e. he still needs my help about 90% of the time to pull to stand. He's also stronger in the legs, very weak in torso and arms.

I'm sure you have a list of foods you can give to add calories (Evan is still only in the 2% maybe less) but just in case here are the ones we use:

sour cream, hummus, coconut, cheese dip on fruit and veggies, cream cheese, mayonaise (like on potato salad).

I hope he gains weight so you can continue to go up in GH.

Thanks for all the info and I hope your rash is gone soon!

Andrés Acosta said...

oops, I mean he progress from that point slowly.

Anonymous said...

But you did it!! I am in awe. Did solo travel with Alexi several times, but never pregnant. You are either amazing, or insane, or both. Probably both. ;)

For plane travel we always used these:
They are awesome. Seriously. You can get them used too. No need to have a stroller on the plane and the easiest way to bring the car seats.

Hotel. Uck! Thank goodness for friends.

Okay, bawling in front of a cop when pregnant. BTDT when pg with the boys... totally pregnancy hormones. While I was crying, I was actually asking myself, "Why on earth are you crying??!!??" Could not stop, despite all logic. I don't even think I was all that noticably pg yet. Must have looked like a total nutjob. He he ;)

Dean is such a cutie pie!!! Love that he is doing therapy in the airport.


Ali Foley Shenk said...

Rhea, someone in the airport told me about that little invention! That's the way to do things. And yes, me traveling alone on this trip while pg was almost entirely insanity.

I figured I wasn't the first to bawl my eyes out uncontrollably in front of a cop. It was horrible. I could not stop crying even though in my head I felt like I was NOT actually falling apart. Ahh, hormones. :)

Laurie said...

Dr. Miller is amazing, isn't she? I don't know where we'd be without her.