Meet the Angels...or at least most of them. Pictured here are Lori, Deborah and Martha. The "other" Deborah was not around when we took the picture. Each of these wonderful people comes over one night a week to stay in our guest bedroom and look after Luke so we can get a good night's sleep. On a good night this means getting up at 2am to give him his meds, maybe watch him stretch and yawn a little and them back to sleep for the rest of the night. On a not so good night, if Luke wakes up, maybe in pain, or maybe having trouble breathing, they take care of him and try to rock him back to sleep. Knowing that we have the support of these great friends is one of the things that makes this journey a little more bearable. Thank you from the bottom of our hearts.
0 Comments
We have never met them, but we read about them last year in a local newspaper article. Joe and Renee Hurst have two children, Savannah and Jackson and live just across Tampa Bay from us in Clearwater. Savannah was born in August 2010, two months before Luke. She was diagnosed with MLD at about the same time as Luke. They went through the same string of misdiagnoses before the awful truth was discovered. I just found out that Savannah passed away on March 6th. Even though we don't know the family, we know something of what they have been going through and our hearts go out to them. Rest in peace little Savannah.
Oh boy, it's been forever since we posted an update. In fact it's been forever since I started this post and haven't got back to finishing it. Sincere apologies to everybody out there wondering what is going on and how Luke is doing. Well, as you can see from this photo, he still smiles! We finally took a trip up to Pittsburgh Children's Hospital towards the end of February to see Dr Escolar's group and get an update on how far Luke's condition has progressed (more on that in a separate post). One very important piece of information she gave us is that based on his rate of decline, which is pretty slow, he may live to 9 or 10 years old - much older than we were thinking before. On the one hand this is wonderful news; Luke will be with us for much longer than we expected and that is truly a blessing. On the other hand, we can't help wondering how are we going to cope with this for another six years. Charlotte will be 20 and Yannick will be 17! Luke is doing well now, but we know things are only going to get worse and it's a daunting prospect. But the reality is we don't have to cope with it for another six years; we just have to cope with it tomorrow. The future is lots of tomorrows strung together and we will adapt as Luke's condition changes. We really don't know how this is going to go; Luke is Luke and all we can do is love him and care for him so he keeps smiling as much as possible for as long as possible. So with that in mind what I thought I would do for this post is describe a day in Luke's life so you get an idea of how things are with us. We are learning that routine is very important for him, not just for his meds, but so he is comfortable with what is happening around him. It's obvious that breaks from the routine can upset him, so we try to keep those to a minimum. Luke generally wakes up around 7 or 7.30am. He's been sleeping well of late, so usually all we have to do is give him his meds at 2am and then he sleeps through until the morning (thank you Luke!). We still have Luke's Angels coming over three or four nights a week, so on those nights we don't have to worry about the meds, or anything else for that matter (thank you Angels!). During the week we give Luke his breakfast while he's on the changing table. It's a mixture of a stage 2 baby food (oatmeal or mixed grains) diluted with prune juice and water and spiked with a scoop of Duocal (a concentrated supplement designed to give him more calories in a small amount of food). We use the prune juice to maintain his GI motility (a polite way of saying to get him to poo more often). On the medication side he has a low daily dose of an antibiotic (to stave off possible infections) and some Ranitidine (Zantac) before we head off to school. We head out the door for school (Children's Nest) between 8 and 8.30am. In the car we hook Luke up to his automatic feeder that pumps in about 350ml of Neocate formula at 125ml/hr, also spiked with Duocal. We always make sure he gets to close the garage with the remote (after all this is 'Luke, I do it' we are talking about here). On the way to school we "do the bumps" along Mac Dill Avenue. Luke loves these and if they ever level out the road he's going to be really upset (Hillsborough County Public Works Department please take note). At school he has a stander just like the one at home, except it's a somewhat un-manly pink colour, but that doesn't seem to bother our Little Big Man! We put him straight in that from the car and after pressing his little finger on the car remote to lock it, we wheel him into the school where he is often greeted with a chorus of "hello Luke" from his little friends. We wave bye bye at the window and head off to work. Luke stays at Children's Nest until about 4pm when he is picked up by his nanny Danielle. The school give him his meds at 10 and 11am and give him lunch (more diluted stage 2 meals) once his automatic feeder is done. Usually he doesn't sleep at nap time, so he plays with his teacher Miss Laura who takes great care of him (thanks Miss Laura!). It's great that he is still able to attend the day school and we are very appreciative of the love and care they give him (thanks to Miss Jessica and all her staff). When he gets home with Danielle there's another round of meds and more feeding to be done: a stage 2 meal and a mixture of Neocate and natural yoghurt. Danielle does a great job of taking care of Luke and also looks after Charlotte and Yannick when they return from school. She also keeps the house in order(thank you Danielle!). Danielle is a real treasure - she has been with us for three years and has stuck it out through the trauma of Luke's diagnosis. This is not exactly what she signed up for, but she has carried on through thick and thin. We would be lost without her. Either Caroline or I (or both on a good day) arrives home by 6 or 6.30 and takes over from Danielle. We try to have a bit of fun with him, often playing the game of "bye bye" (invented by his grand parents, Baba and Mimi during their last visit) where we launch him across the room in his stander then make like we can't find him. This almost always raises big smiles or chuckles. When it gets warm again, we will alternate with trips around the pool in his floating 'red car'. We push him around and he loves bumping against the sides. Luke's evening outine is then pretty fixed. Around 7pm we take him into his room put on some quiet music (or in my case lately it's been Pink Floyd - something I think it's only fair he hears while he still can), lay him on the changing table and give him his evening meds - Ranitidine and Melatonin (to help him sleep) and occasionally Valium if he's having trouble getting settled. We try to keep the Valium to a minimum because if we don't he will get used to it over time, and we will have to increase the dose. After the meds we give Luke his bath in an inflatable baby bath supported on plastic shelving in the en suite shower - nice and high to save our backs (thank you Uncle Nigel). Then its back onto the changing table to dry off play a little pick-a-boo with the towel and many go rounds of making like we can't find him. We brush teeth (he loves this with Daddy and most of the time clenches his teeth tight with Maman - go figure) and into bed for a story and a song. He really seems to enjoy this evening routine and if we miss any part of it he lets us know in his own special way. By 8.30 or 9 he's usually asleep and we finish dinner if we didn't manage to fit it in beforehand. On our nights off one of Luke's Angels arrives around 9.30 and stays over to give him his meds at 2am and watch over him in case of any problems. Lately he's been sleeping really well, which we take as a good sign. Long may it last. So that's about it. A day in the life. Thanks for reading. We'll try to keep things more up to date from now on. Tomorrow is another day. |
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
|