An Update On Luke

It’s no secret that Luke didn’t have the easiest start to life. A number of medical issues made life difficult, and we had our moments where we really struggled. Through it all, Luke has been such a little trooper. He has been a happy baby/infant/toddler, continuing to laugh and smile….and grow. His resilience has amazed me time and time again. As time has gone by, Luke has either outgrown or adapted to a number of things……and I want to go over those now.

Allergies: We still struggle with various food allergies with Luke. I don’t know if we are used to it, or things are just getting easier, but he doesn’t have nearly as many reactions now as he once did. He has outgrown his apple allergy, and can handle small amounts of soy baked into foods. He still struggles with quite a few foods though. Dairy is his biggest issue right now. One little bit of dairy and he has a horrible night sleeping, and is back to bloody mucus stools by morning. He came into contact with a tomato that touched cauliflower and had hives on his entire body for the rest of the day. We still can’t do cauliflower, broccoli, green beans, squash of any kind, cherries, black berries, peaches, strawberries, pears, pineapple, plums, nuts, eggs, and probably more that I am not thinking of now.

Overall, Luke is doing really well as long as we avoid trigger foods. We went in to the allergist at his 12 month check up for the MMR because it has an issue with egg allergies. Luke broke out in hives, but since he didn’t struggle with breathing we can finish up the rest of the vaccine at the pediatricians office. I am to take him back at 18 months (give or take) to repeat his skin prick testing. As he continues to grow and develop, the allergist believes that Luke will continue to outgrow his allergies. We have had some breakthroughs and some set backs, but overall he is doing so much better than he was.

Asthma: Luke does still struggle daily with asthma. If he cries really hard, or runs a whole bunch he will have an attack. Sometimes we have to administer meds, but the majority of time we have him sit and calm him down which works. Asthma is something that is going to affect Luke for the rest of his life…..but day to day it doesn’t bother him that much

Cardiology: Luke was born with an innocent murmur, and a small hole in his heart. The cardiologist has told us that neither is life threatening and needs no further treatment. He will always have the murmur, and the hole may or may not close on its own, but since neither pose a health risk we don’t need to monitor anything with his heart.

ENT: Luke does still seem to have a lip tie, but it hasn’t shown to be an issue. The ENT recommended no treatment for now, and to consult with a pediatric dentist if it becomes a problem in the future.

Gastroenterology: We brought Luke in last week to the GI for a follow up to check his iron levels and see how he was doing overall. The GI is super pleased with how well Luke is doing. When we first met with the GI, he told us that in his (many) years of experience that most babies with the reflux and mspi that Luke had outgrown most of the issues by the time they are one. Luke does still suffer from the occasional reflux flair, but it isn’t anywhere near as bad as it used to be. He throws up maybe once or twice a month, a dramatic improvement from where it was before. We still have issues with milk, and will keep Luke on Elecare until we can find a substitute or his system matures just a bit more and he can handle  regular milk.

We did do a blood panel on Luke last week to check on his iron levels. He was anemic with incredibly low values, and I got a lot of comments on seeking a second opinion when the GI decided to forgo an infusion and opted instead to try to bring the levels up through iron supplements and diet. I am so glad that we have such an experienced GI on our team because his suggestions on going with the least invasive treatment proved to be correct. Luke’s iron levels (actually all his blood levels) are perfect now. As we were able to introduce more foods, we were able to bring Luke’s iron levels up without having him have to go through iron and blood infusions. We do have to bring him back sometime in December for a follow up, and at 2 for a repeat blood draw to make sure he’s still on the right path…..but our GI journey is almost done.

Hematology: We still don’t know if Luke has the same platelet disorder that I do. We can’t take him in for testing until he is at least a year and a half old due to the amount of blood needed to run the test. We should have an answer in December.

Urology: Luke was born with a chordee and hypospadia, which required surgical repair to avoid life long issues including pain and infertility. We haven’t had any issues with his penis since the surgery. It is still a bit swollen, which is normal because Luke wears a diaper. As soon as he’s in regular undies, the swelling should totally dissipate.

Luke is such an amazing little boy. He is so incredibly smart and picks up on things really well. He has started trying to wash his own hair and body in the shower, follows commands (when he wants to), “reads” to us all the time, knows multiple words, has spoken his first 3 sentences (I want out, I love my brother, let’s go night night), loves to give hugs and kisses, is super interested in other kids, and is doing new things every single day. We are working on getting him to sleep in his own bed, and are doing well at nap time, but haven’t made the transition at night yet. It’s so cute watching him come out of his room when he wakes up.

Overall little dude is doing amazing and is so excited about everything he tries. He is such a happy feisty little dude and makes me laugh every single day. I love our snuggles and his smile and just getting to hang out with the little dude.


6 thoughts on “An Update On Luke

  1. I’m so pleased Luke seems to be coming through these food allergies. I have always felt really sorry for you guys with that. It must be so hard. I’m getting a small taste of it now with the baby – she is intolerant to a number of foods through my breastmilk so I can barely eat anything. I don’t think we will be as severe as Luke has been though. Poor little dude 😦

    Liked by 1 person

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