I wanted to take a few moments to add a video about another child who suffers from Mastocytosis. His mom is holding a fundraiser in Ohio and was able to get the local news to do a story. It really touches my heart to be able to connect with others who are dealing with the same issues as we do with Liam.

Birthdays & Family!

We had a wonderful Surprise party for my in-laws this past weekend. Bill turned 65 on July 17th and Sue turns 60 on July 30th. We had about 45 people at the party including Auntie Mary Alice, Auntie Kathy, Uncle Bill, Janet & Lou, and Bev & Timmy (All from the East Coast). Kelly also flew in so they had all their kids together. Some of Bill's coworkers came with their families.


Carol and Debbie (Weaver) catered the party for us and made the best foods. These ladies are truly amazing and I don't know what I would have done without them.
Jimmy made the best Peach Sangria. It was the hit of the party. His Mint brownies were as good as ever... The Karaoke machine was also a hit. I never saw so many people jump for a microphone... Liam and Abby were so well behaved. They had a great time playing with friends and showing off. In the end, it was a great party.








On Monday, we took a trip to Napa with the family. The day started off with a butterfly landing on Sue's hand. We figured this was good luck.






We made it to a few wineries including Robert Mondavi, BV, and J. Satorri. We decided to have a tailgate lunch which was perfect. Then headed to the hotel in Ronhert Park. We ate dinner at Olive Garden and ended the night chatting around the jacuzzi. What a perfect day!


Tuesday we drove to Bodega Bay. We saw the church and school house in the movie the Birds. and tried to go into a casino before realizing that it was really a bar anf grill.... Why they put a Casino sign outside is still a mystery...

We ate lunch in Occidental at a place called Howard's Station. It was definitely the town hot spot. We stopped into a toy store and I bought Abby a ballerina skirt and Liam an aligator toy. The Ballerina skirt was a huge hit!

We ended the day at Iron Horse Winery. It was beautiful. The tasting area overlooked a valley of grapevines and was just breathtaking. It was the perfect way to end our day!

I enjoyed spending time with the family. I hope we get more times like these. I will cherish the moments, like Mary Alice's punchline "So What." And my Ladybug! Or just feeling like a couple again with Bill. It was so nice to go to bed and waking up without having to worry about the kids. Carol kept them overnight and gave us a break. It was such a wonderful time.

We now have to get ready for Liam's party on Saturday... We have such a busy calendar this summer...But I am enjoying it.

Milestones and other fun stuff

Abby and Liam are so cute these days... I thought I would just write about some of the cute things they are doing.

Abby is in a dress phase. She only wants to wear dresses that spin. She loves to sing and dance. She is really good at telling us opposites. She knows who the president is and continues to surprise us with funny sayings like telling Billy that she wanted to have a conversation with him. She loves Dora the explorer and princesses. She is very loving and I am so lucky to have her as my daughter.


Liam is almost 1 year now.... He has 7 teeth and more on the way. He started crawling doing the army crawl, but recently started lifting his belly. He is also pulling up on everything and starting to push things around. He has let go a few times. He will be standing on his own any day now.

Liam learned to drink out of a straw earlier this week and also said byebye and waved when I took him out of the room. He is starting to associate sounds with words and words with actions. It is so amazing to watch him learn and grow.

He is eating all kinds of table food now and only eats baby food a few times a week. We will be transitioning him off formula in a few more weeks. My baby is growing up.


Abby and Liam are starting to play together more and more. Liam crawls into Abby's room and gets into her toys. Abby loves to hold her brother and give him hugs. She is such a great big sister.

Both of my kids continue to amaze me and remind me how much I love being a mom. We have our rough days but when I see them smile and hear them laugh, I forget all about the struggles and try to capture the moment.

Mastocytosis

We recently learned that Liam has a rare skin disorder called Mastocytosis. He has a version called Cutaneous mastocytosis, Uticaria Pigmantosa. This means he has several spots that are confined to the skin. It is a disorder that causes him to produce an abundance of mast cells that clump together and form spots on his skin. Most of the time, these spots are light brown, smooth, and don't cause any issues, but when they are triggered, they can become raised, form blisters, and release histamines. He can break out in hives and become agitated. He will most likely deal with itching and discomfort throughout his childhood.

We first noticed the spots on Liam at around 3 months. Spots started appearing on his scalp. Because he didn't have much hair, it was easy to see the light brown spots. At his 4 month check up we showed the doctor, but she was not worried. She said babies get all kinds of spots and they typically go away, so we would just watch them.

As time went on, more spots appeared and they were not going away. Spots were now on the back of his neck, on his back, arms and legs. The doctor continued not to be worried, so we tried to ignore it, but it was becoming obvious that something was going on.

Besides the spots, Liam seemed to be sick more than not. He always seemed to have runny eyes and nose. He has had more upper respiratory viruses than I can count, and developed wheezing when he is sick. He was given a nebulizer so we could do breathing treatments at home. I was worried about him, but in the end, he remained happy even when sick, so we continued to talk to the pediatrician but did not worry too much.

At 9 months, we finally were able to get the doctor to call in a dermatologist. She came in, looked at the spots, and sadi we should be referred to dermatology. A week later, we saw a dermatologist who within 5 minutes diagnosed him with mastocytosis based on a darrier test. This is a test where he scratches the surface of a spot with his pen. The spot became very red and started to blister leading to the diagnosis. In order to be 100% sure, he said we could do a biopsy.

At first we were not sure we wanted a biopsy, but then decided it would be best to have the diagnosis in case we ever had issues with insurance. Sure enough, the biopsy came back positive.
We had already been doing some research about the disorder. There is no cure, but they can treat symptoms with antihistamines and other meds as needed. The disorder seems to clear up on its own during adolescence...

Since the biopsy, we have had several cases of hives. We are trying to figure out what causes them but so far nothing. I think it is the environment. Heat is a common trigger and we have had some hot days. Stress is another trigger, so when he gets mad, he can cause himself to have a reaction...

After a lot of persistence from me, we were referred to an allergist. She seemed really interested and was helpful in that she did allergy testing, gave us printouts of common triggers, prescribed us an epipen since stings seem to cause a larger reaction in masto patients.

I still feel like the doctors do not really understand the disorder. Most of them have only read about the disorder and never treated it. The allergist said this was her second case in 30 years. The dermatologist said he had seen it once before and the pediatrician has never seen it.... I am trying to educate myself so I can drive his medical care.

I joined a website called Mastokids.org I can now interact with other parents dealing with this disorder and learn from them and ask for advice. It has been such a releif to have this resource. I am glad we are not alone.

As I mentioned. he has broken out in hives several times over the past month. We are not sure why, but continue to track. Today when we went to pick him up from daycare, they pointed out a blister on his head. It is raised and filled with liquid. This is the first time we are seeing a blister reaction without a doctor causing it. We gave benadryl and are now watching it....

I feel like this will be a neverending battle but we will learn much along the way. I am going to try to update this page as we progress. If anyone who is dealing with this disorder finds this blog, please do not hestitate to contact me.

I am realizing that spots are a part of who he is and that makes them beautiful!