It had to happen sometime, right? Luke paid a visit to the Museum of Science and Industry (MOSI), here in Tampa, where they were showing The Force Awakens and encountered this nefarious looking bunch of characters. But the Force was with him of course and the dark side baddies were overwhelmed by his light side charm. And so it goes in life. Luke has been fighting the evil Empire MLD for more than four years now (counting his original eye trouble as the start) and so far he's winning the war. We all know where this is going, but for now it's one battle at a time. His latest skirmish was once again with the Sith Lord GI motility. We thought we were doing well, keeping things in balance with lactulose, prunes, suppositories and enemas, but little did we know he was still getting backed up. He was vomiting a lot and continuing to lose weight at an alarming rate (and he really doesn't have any to lose), so we headed back to the Rebel Base ER for some tests and a good clear out. Since then, we've added Miralax, twice the number of suppositories and a little advice from Jedi Master Yoda (go, you must!), which seems to have done the trick. No vomiting for a week now and a fair bit of pooping by himself - always a good sign, right? He's also getting Gatorade instead of water to give him maximum calories and as the food stays down, the weight goes up (hooray!). So this episode ends with the destruction of another Death Star and balance restored to the Force. Until the next time in a galaxy far, far away...
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Not to be outdone by his big sister getting ready to drive the family car by herself, Luke was in trouble with the local traffic cops the other day for speeding around the playground at school. Luckily he charmed his way out of a ticket and got off with a warning and a smile. He's actually getting ready to pilot his own new wheelchair having outgrown the Kidcart he's been using for the past couple of years. It's a big transition and we haven't quite got the adjustments right yet, but we hope he'll be comfortable in it very soon. Other big news is that we recently received approval for overnight nursing, which will be a great help. It's taking some time to find the right nurses, but hopefully we'll get there soon and we'll be able to get some more calories into Luke. He needs to put on some weight to improve his general well-being and help with his breathing. Lately he's been less able to spit out his saliva so it ends up going south instead of north. Some of this ends up in his airway and he starts doing his impersonation of a filter coffee machine. Joking aside, this is a significant risk for him if it gets into his lungs, so we need to stay on top of suctioning, which is no fun for anyone involved. He's been to see a Pulmonologist for the first time recently and among other things she has prescribed a "percussion vest" for him that apparently vibrates and helps him to cough up his secretions and keep them where they are supposed to be. Onwards and upwards... Thanks for checking in. Firstly - apologies to all of you who have been unable to find Luke's web site for the past week. His disorganised parents didn't pay the bill and it's taken some time to get it all up and running again, but we're now back on line and fully financed. Phew. So here is Luke in his upgraded kid kart, ready for take-off, or at least ready to go trick or treating for Halloween. Our flight around the neighbourhood was a huge hit and we would like to thank Biohazardous, that's Luke's big sister's Robotics Club at Plant High School who came up with the idea, built the addition and installed it ready for action. They are having a fund raiser currently so if you want to show your appreciation you can do it here: https://www.crowdrise.com/biohazardous20152016/fundraiser/brickbuddies. Aside from his airborne antics, Luke is doing OK. We are still struggling to get enough food into him and are hoping to add some additional nursing cover so he can be fed during the night. His grandmother from France is arriving tomorrow for a couple of weeks to help out and give mum and dad a chance at some uninterrupted nights. It looks like his trip to Pittsburgh now won't happen until the spring due to scheduling difficulties. Thanks for checking in. Back soon! This is Luke at one of his physical therapy sessions blowing grape flavoured bubbles by pushing on a big red button. It's something he's done many times before - I think you can tell that from the look on his face! Really? You want me to do this again? "Blowing bubbles" is also the name we use for venting air from his tummy through his G-tube. This needs to be done regularly - just like burping a baby. Sometimes, like at 5 am this morning, it's really impressive. Luke woke up in some discomfort and you could have got a pretty decent note from a trumpet with the amount of air he blew out. Once done, he was straight back to sleep with the hint of a satisfied smile on his face.
So, a few things to report. First is that we didn't go to Pittsburgh as planned. Unfortunately, dad to go on an emergency trip for work so we had to postpone. Still trying to figure out a time that works for everybody. Second is that a chap called Chris Seymour, whose niece Cori has MLD, is doing a marathon challenge in support of the MLD Foundation. Actually that's 7 marathons on 7 continents! You can buy T shirts to support Chris' fundraising efforts here: https://www.bonfirefunds.com/run-over-mld . Good on you Chris. Lastly, Luke turns FIVE tomorrow! How about that? When we first learned of this awful disease, most of the literature said that children with the late infantile form usually die before they are five. This seems to be a pretty outdated statistic these days, with kids often surviving to seven or eight. Still, it's a milestone that has stuck in our minds and a big deal for Luke. We will be having a party for him at home on Saturday with lots of friends from the neighbourhood and his school and the army of wonderful people who help to take care of him. We'll post pictures to the gallery. As always, thanks for checking in. What indeed? Five months since our last posting. How time flies. The last entry was just before our trip to Pittsburgh in February, and now we are planning our next one in September! So, to all of you who have been wondering how Luke is getting on, a huge apology and a promise to keep things up to date in the future. The take home from our February trip was that Luke has gone through "the hard part", that being the major decline in his condition, and now he is largely stable and can stay this way for an extended period. And for the most part so it has proved. He has carried on going to school in the care of his loving nurses, even during the summer because the YMCA summer camp has been hosted at his school - how cool is that for someone who thrives on familiarity and continuity? He's also growing up. He'll be five on 1st October! Therein lies one of the challenges though - figuring out how to get enough food into him (and staying in him!) so he puts on weight. We've been thinking about a range of options lately, but fingers crossed we may have hit on the solution, for the time being at least. We've cut down on the liquid formula and increased his bolus feeds during the day, including quite a bit of Nutella and peanut butter mixed in, betraying his French and American heritage (mmmm.... thinking we need something English in there too, custard maybe?). Overnight he gets only water through the automatic pump and this seems to work well for him - to the extent that we haven't had any middle of the night upsets for a while now (I have one hand pressed firmly on the wooden desktop as I type this). Luke also had a return trip to Shriner's Hospital back in May for a repeat of the Botox injections in his legs. This is to reduce the spasticity in his adductor muscles that pull his legs across each other and make it difficult for him to stay in his stander. It seems to have been reasonably successful, but not nearly as good a result as the first time (which is apparently pretty normal - so you can't stay young forever, even with Botox). The trip to Pittsburgh next month will be partly to give him the same procedure but using phenol instead - something much more potent. Hopefully this will have a stronger and longer term effect that will make him more comfortable and allow him to be in his stander for longer periods - something that will help in all kinds of ways as he gets bigger. So that's us pretty much up to date. We kept Luke home for the summer while his siblings enjoyed a trip to France and England. Next year we are going to figure out how to bring him with us so we can all be together, as it should be. Watch out for more updates after Pittsburgh. Promise. Here's Luke channeling Bob Dylan in the car on the way to PT this morning. What a cool dude! This is a quick note to let you know that we found out today that Luke has been approved (finally) for full Medicaid cover under the Florida Model Waiver program. This means all his medical costs will be fully covered from now on. For those in the UK, it's a bit like getting the NHS for him. This is great. We've had medical insurance cover for him all along, but there's still been a lot to pay out, partly because insurance doesn't cover everything he needs (see previous posts for our struggles to get nursing care for him) and partly because the patient (or parent in this case) always has to pay a portion due to deductibles and co-pays etc. There are only five slots for the Model Waiver program in the whole of Florida so we are very lucky. Something good blowin' in the wind. Off to Pittsburgh on Sunday! Gasparilla is the pirate festival in Tampa held at the end of January every year to "commemorate" the invasion of José Gaspar (Gasparilla), a mythical Spanish pirate captain who supposedly operated in Southwest Florida in the 1800's. There's no evidence that he actually existed, but it's a great excuse for a party on Bay Shore - so much so that it happens twice on consecutive weekends. It's a bitter-sweet time for us because it was at the end of January in 2013 that we had confirmation of Luke's diagnosis, so this is when we remember back to the day knew for sure that Luke had MLD and our lives changed forever. But he still looks great in his pirate garb, right?! Interesting variation having a dolphin on your shoulder for sure! So, how's he doing? Pretty well, by and large. He had a cold with bunged up sinuses a few weeks ago, but he's well over that now. We have his vomiting under better control now because we are not trying to stuff him like a Christmas goose - thanks to Dr Escolar's team for setting us straight on his calorific needs, which we were far exceeding. He still has his moments, but they are much fewer and further between. We are planning to consult with a nutritionist to make sure we are doing the best we can on his diet. His hips are still causing him trouble and we have brought forward our trip to Pittsburgh so we can get everything checked out and hopefully make some decisions on what - if anything - we should do about it. We'll be up there on the 16th and 17th February. So much for waiting for the end of winter... He's been going to school pretty regularly, including a trip to the zoo last Wednesday. Thanks to his nursing team that all seems to be going smoothly. So, cool runnings for the moment. We'll be back with an update after Pittsburgh to let you all know how he looks from the inside as well as the outside. Thanks for checking in. So the holiday season came and went and we are fast approaching two years since Luke's first diagnosis. One day at a time really does add up. Luke had a good Christmas, being pampered by his grandparents Baba and Mimi, over from France for three weeks. We enjoyed being pampered by them too. But it's good to get back into something of a routine in the New Year. And the New Year has brought new stuff: new nurses, because our insurance decided to change agencies; two new kittens (actually they turned up at Thanksgiving) who spend a lot of time lying next to Luke purring away; a new school bus that now picks up Luke and his nurse from the end of our drive at 7.15am on school days (see pic); and finally some new challenges for Luke. Lately he has been vomiting quite a bit. It's hard to tell whether this is the result of a bug, or just that it's a challenge to keep things all going in the same direction due to his muscles acting up (seems to be mostly the latter). When this happens we have to back off on his food intake a bit, and if it carries on we may have to resort to Pedialyte only for a while to give him a chance to recover (like last week). This also makes it difficult to keep his weight up. He put on a couple of pounds over Christmas, which was really pleasing (I know what you're thinking, right?). After last week's excitement this has mostly dropped off again, but not completely, so maybe it's two steps forward one step back. Also his hips are giving him trouble because they are in the process of dislocating. We had him up at the Shriners Hospital again last week for repeat x-rays and it looks like things have got a lot worse since last time (a couple of months ago). His left hip in particular is painful so it’s hard to put him in the stander. He will go in it, but only on his right leg, with his left leg sticking out, bent across his right leg, so he can't stay in it for long. The Orthopaedic Dr at Shriners says there are some surgeries that might help, but we are very reluctant to put him through that. We are planning to discuss all this with Dr Escolar on our next visit to Pittsburg. That's scheduled for early April but we are trying to bring it forward given there is quite a bit going on at the moment (Pittsburgh in February again; lovely).
As always, thanks for checking up on Luke. We'll post another progress report soon. |
Luke ParkesLuke is six. He lives in Tampa, Florida. His mother is French and his father English. He has an older sister who is 17 and an older brother who is 14. CategoriesArchives
December 2016
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