Monday, February 13, 2017

Wyatt is three!


Wyatt is three years old!


Our little spotted baby is a baby no more! This wonderful child of mind is a ball of energy. But he is also the sweetest boy. He loves to say to everyone and everything and stops to smell every flower. He is my pride and joy. And while I am sad to see my baby get bigger, I am so excited about the little guy he is becoming. I could not be more proud of him.



 
Potty training reaction
Some issues we have come across with this transition from toddler to preschooler is potty training. Like all kids his age, he has accidents and it seems as though the urine is causing the masto spots in that area to become greatly agitated. He never really had this issue while wearing a diaper. I am assuming this is the case because the urine was soaked into the diaper. However when he has an accident, it has no where to go but his skin. And even though we catch his accidents immediately, it still seems to be causing issues with his spots. I haven't quite figured out how to stop this from occurring. So hopefully we move on from the accident phases as quickly as possible. (Said every parent ever)
Ant bite reaction


Wyatt is still currently taking his Zyrtec and Zantac 2.5ml every day, twice a day. We have found this is the best medication time table for him. We still have our Benadryl as a back up medication, but rarely have to use it. So far we have not found any new foods that cause issues, but he also has a lot of food left to try. For example, he has not tried tomatoes and that is a common trigger food for masto children. So we still have some experimenting to do with regards to his diet.

Late last spring he was bit by an ant in the backyard. This caused hives, swelling and full body flushing. We immediately gave him Benadryl and let him rest. This help tremendously. Luckily, we did not need to use the epi-pen. However I worry if it receives more than one bite in the future it could be a more serious reaction. We have to watch him closely while he is outside to make sure he doesn't accidentally walk into an ant hill.



We are currently investigating two issues with his allergist/immunologist. The first is a mysterious rash that has appeared on his legs. At first we thought it may be fungal, how the anti-fungal cream is not working to clear anything up. So we will revisit in a few days to try to figure out our next step.

The second issue is that he appears to be reacting to something since the new rash appeared. He has had three reactions in the last couple of weeks. However we don't have any ideas on what he may be reacting to. So we will have to keep a close eye on him until it resolves.



Despite all of the recent issues we have encountered he is still the happiest kid. Everyday is full of exploration and learning. And he very rarely gets overwhelmed with his reactions. I couldn't have asked for a better kid. He is perfect the way he is. We love you Wyatt. <3

Wednesday, March 2, 2016

Wyatt is two!



Wyatt is two!

This adventurous, curious, ball of energy turned two years old last month and the toddler years are now in full swing! Wyatt is currently an inch shy of three feet and weighs a whopping 35 pounds. He is currently working on adding words to his vocabulary repertoire, the most recent addition being the very important "cookie". He has also been diligently working on jumping in the air with both feet, this delights him greatly. 





He continues to be the nature loving little boy that he has always been. Anytime he can get outside he is ecstatic. Running, throwing, climbing, jumping, kicking, spinning, he loves it all as long as he is outdoors. He begs us daily to go outside and play. As the weather is warming up this request is finally being approved more often than not.


Wyatt is currently on the same medication regimen. He sees both his oncologist and immunologist in the late spring and early summer this year and perhaps we will reevaluate his current medication plan. His current course is working very well, but the ultimate goal is to eventually eliminate his daily medication and use rescue mediation as necessary.

We have been slowing adding new food to his diet and in the last few months we have successfully added: cheese, blueberries, pineapples and chocolate. Personally I am most excited about the cheese, as its not only my favorite food in the entire world, but its extremely painful finding "children's food" that does not contain it. Wyatt has only had one reaction in the last six months. In the photo to the left you can see that his right ear became swollen and red. We had just come from a restaurant that he has eaten at before with no problem, however this time resulted in a reaction. Perhaps there was cross food contamination? We are not quite sure. Luckily, with some Benadryl, it immediately subsided.

Overall, Wyatt is a very happy and loving little boy. I constantly forget that he is a chronically ill child. Besides the doctors visits, medication, mastocytomas and food restrictions he is just like every other toddler. He has his good days and his bad days, he is loving and he is trying. But most of all he is my son, perfect the way he is. When strangers in public ask questions or make comments it always catches me off guard. To them, at first glance Wyatt is ill, diseased, contagious. When I explain what he was born with, they often appear sad. But there is no need to be sad for Wy. He is an amazing kid and will be an amazing man one day. There is no doubt in my mind.

Saturday, August 8, 2015

Wyatt is a year and a half!


Wyatt is a year and a half!



Wyatt is no longer a little baby, but a full fledged toddler standing at two feet and nine inches tall and weighing thirty pounds! His daily activities include taking everything out of the kitchen and bathroom cabinets. In particular, pots, pans, and nail polish. He also enjoys hiding things in odd places. If there is something to climb, he is already half way up it. 



He absolutely loves to be outside playing in nature. We took him to the lake for the first time this summer and had a blast! Anywhere he can roam free in the fresh air makes him a happy guy! Unfortunately it has been a sweltering summer here in Georgia so our outside play is limited. He easily gets overheated, breaks out into a sweat and starts flushing. We try our best to take him out in the evening when it is cooler so that the heat doesn't cause him to be ill, but those days are few and far between this summer.


Wyatt has not had a single blister in eight months! He had one case of hives around his mouth caused by ingesting vinegar. He got ill once from eating french fries from Steak and Shake, and ill once from eating chicken nuggets from Chick-fil-a. Those are the only times we have tried fast food with him, so we won't be doing that again. But overall, those are his only reactions in months. He eats a really controlled low histamine diet and we feel it has really made a difference in his reactions.

In the last couple of months Wyatt visited both his oncologist and immunologist. His blood panel from oncology looked great. His latest tryptase level was 6.5! Which is fantastic and indicates that systemic involvement is not likely.

Immunology is really pleased with his few reactions that he has had. They have instructed us to start marking down "vinegar" as an allergy on medical forms. And to continue both his half teaspoon of Zyrtec and half teaspoon of Zantac twice a day. I asked his immunologist if they are currently seeing any other patients with Mastocytosis and she said no. She said in her forty years of being a doctor she has only seen this disorder less than five times! Wyatt truly is unique.

We love you Wy, happy year and a half birthday buddy!


Sunday, April 5, 2015

Wyatt is 14 months old!


Wyatt is 14 months old today!



We could not ask for a more awesome little boy if we tried. Wyatt is now walking and exploring everything! Adventures are his number one priority these days. And when he comes across something new, he has to figure it out. Especially that little light in the dryer, highly suspicious he says. If it wasn't for his spots people would not have a clue about his diagnosis. He is one happy, fun little dude.




His last oncology appointment was in December, his blood work came back perfectly. His tryptase numbers were in the normal range. They wish to continue monitoring his blood work every six months for now. But so far, he is doing really well and it does not appear that he has any systemic involvement!






It has been four months since Wyatt's last reaction! He hasn't had a single blister or hive in months. We are so pleased with how well his medication and diet have improved his life. He is currently taking a half teaspoon of Zyrtec twice a day and a half teaspoon of Zantac twice a day. He also has been on a completely low histamine diet. His meals have certainly posed a challenge to us as a family, but I am constantly figuring out new meals or how to adapt old meals. We just make it up as we go along.








Thursday, August 28, 2014

Wyatt is 6 months old!


 Wyatt is currently six months old!



And it has been three months since his diagnosis. This doesn't even seem possible to me, but alas, it is true. My little masto baby has had some ups and downs this month (like always) but he is still my bright eyed adventurous little boy! As you can see from the carrot jammed in his mouth teething is in  full swing. He is currently cutting both lower teeth. This has caused him some great stress (as it does any human being) but with great stress comes angry masto spots. So when his teeth seem to be bothering him we give both tylenol and benadrly. This process seems to be working well for us. I don't like giving him so much medication at such a young age, but there really isn't much else we can do. 




Wyatt's daily medications currently include Zyrtec in the morning and Zantac in the morning and evening. They are both antihistamines but they work in different ways. Zyrtec helps with the more external allergy symptoms like congestion, watery eyes, hives, etc. While Zantac helps with internal allergy symptoms like an upset stomach. And I have to say I have seen a great improvement in Wy with this medication regimen. He has about half as less reactions during the week than he used to. So finally some relief for my little one!

We have officially started Wyatt's immunizations back up. We are doing one vaccine a week, with no combination vaccines. We also use an alcohol free organic baby wipe instead of an alcohol wipe (because alcohol can be a huge trigger) and no band aides (because most band aides agitate his skin). So far things have been going well. He has only had normal reactions to the vaccines, so hopefully if we keep up this method everything will be OK. It certainly isn't the fastest or easiest way to immunize a child, but it's our best option at the moment for our masto baby.
As a parent of a child with a rare disorder, it can be tough not to have someone who knows exactly what I am going through. As far as I can tell, there are no other parents in the area with a masto child. I worry about Wyatt and his future, he will have to face more pain, more medication, more public ridicule than most. But I only can hope that this will make him into a strong, confidant man that will help others in every way that he can. I hope that this blog provides information on such a rare disorder to help educate my family, friends, fellow masto parents and the public. I aspire to raising donation funds in the future for further research on this mysterious disorder and possibly even a cure! But fund raising takes a lot of time that I just don't have right now. But I will make it happen one day!

If you are interested in making a donation please visit tmsforacure.org/donate