Join Remmy's Fight

I am so lucky to be blessed with such a loving church community at Nativity. I cannot thank you enough for your outpouring of support for Remmy and I.

Remmy is doing really well right now! I have learned that with this diagnosis, there are good days and bad days. I am really working on treasuring the good days and focusing on being in the moment with him. The bad days seem to come in clusters and they can be draining for sure, but I will always continue to fight for my sweet little baby boy.

Rem is now 3 months old and over 9 pounds which is so exciting, considering he dropped below 4 pounds before we started the digestive enzymes. He smiles and coos, stares intently at people and fans, and loves being held. He is almost able to fully support his head, which is great given his tiny size! 

Remmy has neonatal diabetes, medullary cystic kidney disease, pancreatic insufficiency, and hypothyroidism. He takes medicines 12 times a day but he is a champ about it. All of these diseases fall under his genetic mutation of HFN1b related disorder.

We have had appointments with nephrology, endocrine, GI and the infant special care team at Carolina. For the most part the appointments have gone well and I am encouraged by his continued progress.

Endocrine is going to continue to see Remmy every 3 months or more as needed. He will have lab work done at these visits to make sure that his hypothyroidism is responding to the medicine and that his diabetes is managed with interval feeding and sugar monitoring. Remmy has been fitted with a libre blood sugar monitor on his thigh, with the sensor needed to be replaced every 15 days. This is not a task that Remmy or myself enjoy, but it is better thanhaving to check his blood sugar by 8 heel pricks a day. We do have insulin in our fridge at home in case his sugars soar again. I have to travel to Carolina every 4 weeks to pick up the supplies needed to mix his insulin at home. I really did not want to learn how to do this but there ended up being no other option unfortunately.

GI is on a as needed basis. Remmy is on acid reflux medicine due to his GI issues and digestive enzymes, which he takes every time he eats (which right now is 8 times a day). I have direct communication with a nurse in the GI clinic if we ever need anything past these two meds. Remmy still has GI symptoms on his bad days and I am hoping for relief from that at some point.

Nephrology was hard. As I have stated from the beginning, I can handle the hypothyroidism, the neonatal diabetes and the pancreatic insufficiency which is causing his diabetes and malabsorption issues. His cyst riddled kidneys are much more challenging. He was diagnosed with a specific kind of cystic kidney disease, medullary cystic kidney disease. I googled that and had a few very tough nights. Here is the positive: he currently has kidney function and his most recent kidney labs look great, which is reassuring. The negative to this disease is tough – he faces renal failure, renal cancer, dangerously high blood pressure, gout, and malabsorption of required vitamins for the body to function. Right NOW we are not dealing with any of that but it is a time will tell scenario. Due to the fact that Rem was born without cysts on his kidneys and then got numerous ones shortly after birth, leads them to believe he will at some point be in renal decline, the question is just when. So we continue monitoring and continue looking at labs and we hope for the best. She said his kidney labs look so great that we do not need to return for a year, unless something changes.

The special infant care team will see Remmy every three months until he is 2. The team consists of a physical therapist, a speech therapist for feedings, a dietician, and a general doctor. Remmy has had some issues feeding so we have been back another time to see speech and they diagnosed him with a MINOR tongue tie, no surgery required at this point and we are working on how to effectively feed him. The team is great!

Anyways enjoy these pictures of my little man and thank you all so much for following along with our story and helping with prayers, love, and donations. They mean so much to us! 

Remmy Maxwell was born on April 7th at 4lbs, 2oz at just 37.4 weeks. Remmy's fight began at birth as he struggled with gaining weight and endured prolonged hospital stays to determine the cause. Remmy has now struggled with maintaining normal levels of blood sugars and has been diagnosed with neonatal diabetes. He will need insulin therapy and monitoring for life. Genetic testing revealed Remmy has a HFNB1 gene related disorder that is multifaceted as it affects protein transcription throughout the body. Remmy has now been diagnosed with neonatal diabetes, hypothyroidism, malabsorption and cystic kidney disease. He will now need continuous monitoring, lab draws, ongoing doctors appointments, procedures, medications and specialty follow ups, as well as potential hospital stays. As his mother Eva will be required to take time off of her job to be there for Remmy and her four other sweet boys at home. Numerous costs have already added up after Remmy has endured three long hospital stays in his short 9 weeks here on earth. Being a single mom, with a newborn at home and in and out of the hospital, and four other boys at home is an unimaginable task. Please help surround this single mama and her boys with love and support during this difficult time.

Here is the most recent update from Eva: I am so lucky to be blessed with such a loving church community at Nativity. I cannot thank you enough for your outpouring of support for Remmy and I.

Remmy is doing really well right now! I have learned that with this diagnosis, there are good days and bad days. I am really working on treasuring the good days and focusing on being in the moment with him. The bad days seem to come in clusters and they can be draining for sure, but I will always continue to fight for my sweet little baby boy.

Rem is now 3 months old and over 9 pounds which is so exciting, considering he dropped below 4 pounds before we started the digestive enzymes. He smiles and coos, stares intently at people and fans, and loves being held. He is almost able to fully support his head, which is great given his tiny size!

Remmy has neonatal diabetes, medullary cystic kidney disease, pancreatic insufficiency, and hypothyroidism. He takes medicines 12 times a day but he is a champ about it. All of these diseases fall under his genetic mutation of HFN1b related disorder.

We have had appointments with nephrology, endocrine, GI and the infant special care team at Carolina. For the most part the appointments have gone well and I am encouraged by his continued progress.

Endocrine is going to continue to see Remmy every 3 months or more as needed. He will have lab work done at these visits to make sure that his hypothyroidism is responding to the medicine and that his diabetes is managed with interval feeding and sugar monitoring. Remmy has been fitted with a libre blood sugar monitor on his thigh, with the sensor needed to be replaced every 15 days. This is not a task that Remmy or myself enjoy, but it is better than having to check his blood sugar by 8 heel pricks a day. We do have insulin in our fridge at home in case his sugars soar again. I have to travel to Carolina every 4 weeks to pick up the supplies needed to mix his insulin at home. I really did not want to learn how to do this but there ended up being no other option unfortunately.

GI is on a as needed basis. Remmy is on acid reflux medicine due to his GI issues and digestive enzymes, which he takes every time he eats (which right now is 8 times a day). I have direct communication with a nurse in the GI clinic if we ever need anything past these two meds. Remmy still has GI symptoms on his bad days and I am hoping for relief from that at some point.

Nephrology was hard. As I have stated from the beginning, I can handle the hypothyroidism, the neonatal diabetes and the pancreatic insufficiency which is causing his diabetes and malabsorption issues. His cyst riddled kidneys are much more challenging. He was diagnosed with a specific kind of cystic kidney disease, medullary cystic kidney disease. I googled that and had a few very tough nights. Here is the positive: he currently has kidney function and his most recent kidney labs look great, which is reassuring. The negative to this disease is tough – he faces renal failure, renal cancer, dangerously high blood pressure, gout, and malabsorption of required vitamins for the body to function. Right NOW we are not dealing with any of that but it is a time will tell scenario. Due to the fact that Rem was born without cysts on his kidneys and then got numerous ones shortly after birth, leads them to believe he will at some point be in renal decline, the question is just when. So we continue monitoring and continue looking at labs and we hope for the best. She said his kidney labs look so great that we do not need to return for a year, unless something changes.

The special infant care team will see Remmy every three months until he is 2. The team consists of a physical therapist, a speech therapist for feedings, a dietician, and a general doctor. Remmy has had some issues feeding so we have been back another time to see speech and they diagnosed him with a MINOR tongue tie, no surgery required at this point and we are working on how to effectively feed him. The team is great!

Anyways enjoy these pictures of my little man and thank you all so much for following along with our story and helping with prayers, love, and donations. They mean so much to us!