We had quite the busy week last week. We had a visit from our early intervention dietician. Although she is very nice, I find these visits to be a little rough on myself. I always wonder if Lochlan has gained weight or height, and if he didn't, then the food I am making for him is not good enough. We cut back on monthly visits, and decided on every other month since I have the hang of choosing, calculating, and blenderizing Lochlan's feeding tube food. I was very nervous because he hasn't been weighed for 2 whole months. My worst fear is that if he stops growing, then they will make us give him formula again. It's never been the case since starting real food, but the fear is always there. Everything went well and he is staying on his curve, but it still makes me and Adam sad to talk about all of the months of growth that he lost when he was an infant. It makes us even sadder to see him side by side kids his age. I'm hoping that one day we can overcome our disappointment, but we still hold out hope that Lochlan will get a transplant in time to grow to a normal height.
We also took the trip down to Albany for Lochlan's urology appointment. The second Lochlan and I entered the ultrasound room, we seemed to panic at the same time. The tech requested that I hold him down on the table, but I just could not do that to my baby. I have always held him during the exams, so I just plopped myself down on the child size table and did my best to calm Lochlan. Even though the ultrasound is completely painfree, Lochlan was hysterical. For a brief moment I was tempted to refuse the test, but we stuck it out. Once Lochlan calmed down, my thoughts began to spiral out of control while I stared at the screen. Every time we get an ultrasound the tech always gets quiet and begins to ask questions to figure out if we know how terrible things are in there. In the dark ultrasound room, the past memories of bad news always come back. It's usually in that moment when I refuse the exam for the right side and then abruptly announce that yes, we know, we expect that Lochlan will need a transplant. The exam ended and then we were ushered into another room for the doc. Every time we meet with the urologist he is genuinely amazed at Lochlan's wellness. He is the same urologist that once told us that Lochlan likely would not make it without dialysis at 2 weeks old. So as we chatted, I brought up that we had started potty training. Lochlan immediately announced that he had to pee. The doc handed us a cup into which Lochlan peed excitedly (apparently peeing in cups is awesome for a 2 year old). It was like Lochlan knew that his job was to pee at the urologist's office, and although he was in a diaper for the day, he didn't pee once in it that day. Even though things are going well now, we remain cautious because Lochlan's urethra has been damaged so severely that it could close up again. The other issue is that he urinates so frequently from the kidney disease that it will be hard to stay accident free when he starts preschool in September.
Our busy week was rounded out by a biannual NYS Early Intervention meeting. As Lochlan nears his third birthday, he will lose all of his early intervention services. Right now we have a feeding therapist, a dietician and an occupational therapist. I was sort stunned when I was notified that the school district would not likely pick up his current services. With the grace of God, Lochlan has met all of his milestones except eating, but it also means that he will not get any services at school. I was told that if he still has a feeding tube, I will need to make arrangements for someone to visit school during the day to give him his tube feeds and medications that go into his tube. While I'd like to start calling the school district to complain, I'm choosing to hold out hope that everything will work out. Who knows? Maybe he will have a brand new working kidney and then we can kick the tube to the curb by Kindergarten.
Thank you for following Lochlan's journey. Please don't hesitate to ask us questions, and please keep us in your thoughts and prayers. The positive impact of everyone's thoughts and prayers thus far has been more important than you all know.
Wednesday, August 12, 2015
Saturday, May 16, 2015
Look who's Two!
We were awoken this morning at 5am by Lochlan's whining. Usually, we wait a little bit and then he falls asleep until 6 or 6:30. This morning, Adam was insistent that he should go and get him. I was glad that Adam brought Lochlan to our bed because I was granted an extra hour of sleep and some well needed snuggle time. Later in the morning Adam told me that he was awoken during a flash back dream of when we were in the NICU. He had a sudden moment of panic and needed to make sure Lochlan was ok. Lochlan is not only OK, he is doing great.
I too was hit by a wave of memories today. I can still feel my heart sink when I think of when I realized that he had no anus, the feeling of letting Lochlan go on the ambulance without me, the exhaustion of standing at Lochlan's side less than 24 hours after he was born, and then realizing that I would not be able to sleep next to my one day old son after his surgery. They were truly the worst moments of my life, but I am so glad that Lochlan will never remember any of it. I'm hoping that as the years pass, my memories will become hazy and less traumatic. I also realize that reliving the moments is something I shouldn't do, so instead, I focus on the bright little boy Lochlan has become.
I follow families that have children that undergo dialysis as infants for months on end until they receive a donor kidney, so even though we have been through a lot, I am happy that we have been able to give Lochlan a somewhat normal life for his first two years of life. Surprisingly, Lochlan doesn't mind his daily shots, constant tube feedings, or bowel regimen. Our hope is that as he grows up with these daily medical needs, he won't feel ashamed or like an outcast. I must say that I tube feed him anywhere and everywhere, and so far our community has been so supportive. I feel awkward feeding him in front of other parents, but it gives me hope because no one has ever expressed disgust or hostility. Without going in to detail, we've started giving Lochlan a potty routine, and he has been amazingly receptive to it. He is so brave and beams with pride when he is done on his potty. His new phrase is, "I dit" which means, "I did it." Lochlan is clearly gaining the determination that it takes to live with a life-long illness.
Last time I posted, Lochlan's Nephrologist mentioned dialysis, but we are happy to report that Lochlan had a little growth spurt, and he will not need dialysis at the moment. We are hesitant now to make any assumptions as to when Lochlan will need dialysis or a transplant. At some point, Lochlan's kidney will reach a tipping point and his kidney function will decline at a steady rate. Until then, Adam and I continue to attempt to treat this time period like a gift of freedom from extra tubes and needles. With a little faith and luck, we are hoping that we will be able to spend the next year away from the hospital. The MRI done in March showed NO tethered cord. It was a huge relief to know that Lochlan will not need spinal surgery. However, staying true to Lochlan's medical history, the report didn't end there. The MRI showed areas of Lochlan's brain that were developmentally abnormal, and that his spinal cord didn't develop down as far as it should have. Because Lochlan has never had seizures and his neurological exams have always been normal, these incidental findings may never affect him.
Last time I updated the blog, Lochlan was eating really well and enjoying it. He quickly gained back all of the weight lost during a horrendous stomach bug plus some, but he has since stopped eating. Both Adam and I admitted to each other today how much it crushed us that he didn't even want to hold his cupcake or stick a finger in the frosting. He did however have a blast blowing out the candle. Despite still mourning not having a child that eats normally, Adam and I mentally condition ourselves to appreciate the small things. A year ago, we were uncertain of how Lochlan would fair on a real food diet. I was deathly afraid of not following the doctor's orders for formula feeding, but I can say that I have mastered Lochlan's blenderized diet in the past year. Many medically complex children live with chronic GI disfunction, so we are happy that we have overcome the odds. Watching Lochlan's growth curve has kept us on the edge our seats, but it gives me the greatest pride to see how far he has come. Watching Lochlan grow into the active, good-humored little monster that he is, has given me the certainty that he will not only be OK, he will be great!
I too was hit by a wave of memories today. I can still feel my heart sink when I think of when I realized that he had no anus, the feeling of letting Lochlan go on the ambulance without me, the exhaustion of standing at Lochlan's side less than 24 hours after he was born, and then realizing that I would not be able to sleep next to my one day old son after his surgery. They were truly the worst moments of my life, but I am so glad that Lochlan will never remember any of it. I'm hoping that as the years pass, my memories will become hazy and less traumatic. I also realize that reliving the moments is something I shouldn't do, so instead, I focus on the bright little boy Lochlan has become.
I follow families that have children that undergo dialysis as infants for months on end until they receive a donor kidney, so even though we have been through a lot, I am happy that we have been able to give Lochlan a somewhat normal life for his first two years of life. Surprisingly, Lochlan doesn't mind his daily shots, constant tube feedings, or bowel regimen. Our hope is that as he grows up with these daily medical needs, he won't feel ashamed or like an outcast. I must say that I tube feed him anywhere and everywhere, and so far our community has been so supportive. I feel awkward feeding him in front of other parents, but it gives me hope because no one has ever expressed disgust or hostility. Without going in to detail, we've started giving Lochlan a potty routine, and he has been amazingly receptive to it. He is so brave and beams with pride when he is done on his potty. His new phrase is, "I dit" which means, "I did it." Lochlan is clearly gaining the determination that it takes to live with a life-long illness.
Last time I posted, Lochlan's Nephrologist mentioned dialysis, but we are happy to report that Lochlan had a little growth spurt, and he will not need dialysis at the moment. We are hesitant now to make any assumptions as to when Lochlan will need dialysis or a transplant. At some point, Lochlan's kidney will reach a tipping point and his kidney function will decline at a steady rate. Until then, Adam and I continue to attempt to treat this time period like a gift of freedom from extra tubes and needles. With a little faith and luck, we are hoping that we will be able to spend the next year away from the hospital. The MRI done in March showed NO tethered cord. It was a huge relief to know that Lochlan will not need spinal surgery. However, staying true to Lochlan's medical history, the report didn't end there. The MRI showed areas of Lochlan's brain that were developmentally abnormal, and that his spinal cord didn't develop down as far as it should have. Because Lochlan has never had seizures and his neurological exams have always been normal, these incidental findings may never affect him.
Last time I updated the blog, Lochlan was eating really well and enjoying it. He quickly gained back all of the weight lost during a horrendous stomach bug plus some, but he has since stopped eating. Both Adam and I admitted to each other today how much it crushed us that he didn't even want to hold his cupcake or stick a finger in the frosting. He did however have a blast blowing out the candle. Despite still mourning not having a child that eats normally, Adam and I mentally condition ourselves to appreciate the small things. A year ago, we were uncertain of how Lochlan would fair on a real food diet. I was deathly afraid of not following the doctor's orders for formula feeding, but I can say that I have mastered Lochlan's blenderized diet in the past year. Many medically complex children live with chronic GI disfunction, so we are happy that we have overcome the odds. Watching Lochlan's growth curve has kept us on the edge our seats, but it gives me the greatest pride to see how far he has come. Watching Lochlan grow into the active, good-humored little monster that he is, has given me the certainty that he will not only be OK, he will be great!
Monday, February 23, 2015
Lochlan's BIG news!
Two weeks ago, Lochlan had a nasty stomach bug which was awful because he lost at least two pounds. With the support of Lochlan's amazing pediatrician and GI doc, we were able to keep him out of the hospital. Considering it took him six months to gain two pounds, I was beyond upset. He looked so sickly and thin that it hurt my heart every time I looked at him. Once he recovered, he must have been so hungry that he finally had the motivation to EAT! He has been an apple, puff, cheese, cheerio, and popcorn eating machine for the past week. Yes, the same child that will not let baby food touch his lips. It truly feels like a miracle because I really thought that he would not eat until he got his transplant. He still has a long way to go and he will need his feeding tube for a while after his transplant, but this week has quieted my fears that something is wrong in Lochlan's throat. Our next goal is to get him to chew, but I think that will come.
In other news: Lochlan's nephrologist dropped a bomb and suggested that we should start thinking about dialysis because he is having a hard time gaining weight and growing. While we were in Boston, they felt that if we could find a live donor, we could transplant before dialysis. We are currently looking for an adult donor with O blood type in excellent health that feels strongly about helping Lochlan. There are two possible donors so far, but because the transplant center does everything to protect the donor, it is hard to find someone that passes all of the health tests. Initial blood testing will happen for all of the possible donors in a local lab at the same time. I will write an extensive post after I do all of my research because the details of being a live organ donor are interesting.
After such an enjoyable uneventful holiday season, we are starting to make our way back into planning for the future. The future is really hard to think about because dialysis and transplant stand in the way like a big speed bump. Seriously, they stand in the way of school, vacations, jobs, house projects and everything else. Thanks to some really kind people from the Saratoga Springs Fire Department and a fireman's legacy, we have a great event to look forward to. It involves a family barbecue, a fundraiser for Lochlan, and a motorcycle ride on September 19th. I will post more details when they become available.
Lochlan will have an MRI on March 18th to see if his spine is tethered. I want to hope that it will be good news, but realistically it is likely that he will need some sort of surgery on his spine. There is no news on Lochlan's heart because his insurance does not participate with the one local pediatric cardiology group. With everything going on, I have been unable to give it my mama bear's all to get it covered. Hopefully this week we can get the gap exception to make an appointment. Maybe between arguing with Caremark over Lochlan's important medictions, I will get sassy enough to get it done.
Sometimes all of this feels like running a marathon with two toddlers on my back, and when I think I want to just give up, all of you special people pick us up and carry us until we are able to run again. I know for sure that we could not do it on our own, so we thank everyone that reads this and cheers Lochlan and our family on.
In other news: Lochlan's nephrologist dropped a bomb and suggested that we should start thinking about dialysis because he is having a hard time gaining weight and growing. While we were in Boston, they felt that if we could find a live donor, we could transplant before dialysis. We are currently looking for an adult donor with O blood type in excellent health that feels strongly about helping Lochlan. There are two possible donors so far, but because the transplant center does everything to protect the donor, it is hard to find someone that passes all of the health tests. Initial blood testing will happen for all of the possible donors in a local lab at the same time. I will write an extensive post after I do all of my research because the details of being a live organ donor are interesting.
After such an enjoyable uneventful holiday season, we are starting to make our way back into planning for the future. The future is really hard to think about because dialysis and transplant stand in the way like a big speed bump. Seriously, they stand in the way of school, vacations, jobs, house projects and everything else. Thanks to some really kind people from the Saratoga Springs Fire Department and a fireman's legacy, we have a great event to look forward to. It involves a family barbecue, a fundraiser for Lochlan, and a motorcycle ride on September 19th. I will post more details when they become available.
Lochlan will have an MRI on March 18th to see if his spine is tethered. I want to hope that it will be good news, but realistically it is likely that he will need some sort of surgery on his spine. There is no news on Lochlan's heart because his insurance does not participate with the one local pediatric cardiology group. With everything going on, I have been unable to give it my mama bear's all to get it covered. Hopefully this week we can get the gap exception to make an appointment. Maybe between arguing with Caremark over Lochlan's important medictions, I will get sassy enough to get it done.
Sometimes all of this feels like running a marathon with two toddlers on my back, and when I think I want to just give up, all of you special people pick us up and carry us until we are able to run again. I know for sure that we could not do it on our own, so we thank everyone that reads this and cheers Lochlan and our family on.
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