Wednesday, April 16, 2025

Update

 I know it's only been a few days, but I already have updates on Matilda. At the end of March we went to see the geneticist, to test for Neurofibromatosis. I was told it would take a few weeks for the results to come back. Well, they came back, and unfortunately, Matilda does have NF. It's heartbreaking, but at least I know. I've lived with it, and know it can be difficult at times. I think of all the people who grow up not knowing they have it, then finding out later in life, and not knowing what to do, or all that it can do. I fortunately know more about it, and know what resources that we'll most likely need. I plan on still doing everything I can for my Matilda, in giving her the best chance in this world with all that I can. Nothing will stop us. While I was growing up, I know some things for me went misdiagnosed, or not diagnosed at all, and I'm sure not all resources were given to me. Also, it made me feel weird having to do different things than the other kids. I hope Matilda doesn't feel the same way. I know how hard it is to be different. Kids can be so mean. I don't want that for my Tilly. 


Anyways, I just wanted to give that little update. For those of you on this journey of ours, and are being supportive, I thank you. I'm loving every moment with Matilda, and miss her when we're sleeping. She is a wonderful kid, and I wouldn't trade her for the world. 

Saturday, April 12, 2025

Growing,Tests,and Cooing.

 I have lots of updates on Matilda. She is up to at least 9lbs. My little girl is getting so big. She is on a beta blocker due to an elevated heart rate. I'm hoping she isn't on it long. She doesn't like it, but I can't blame her. She has also started to babble some, even mimic me. It's so cute hearing her coo. She is more alert, and is staying awake a lot during the day, and sleeping at night. I'm so happy for that, I hope she continues to sleep at night. It's been so wonderful being able to sleep again. She had a genetic test done, and we're waiting for the results. It's to test for the Neurofibromatosis. Hoping she doesn't have it, but if she does I know we'll manage just fine. 

I'm still working on getting child support, but an appointment is set. It's still sad her father hasn't been involved. He really doesn't know what he's missing. It's all time he cannot get back, and I hope it ends up regretting not being involved. After he left me because of his choices, it did hurt. I had put so much into the relationship, and he didn't give me the same back. But, as crazy as it sounds, I would do it all over again. Because I wouldn't trade Tilly for the world. She is an amazing little girl. I love watching her grow every day. 

I'm looking into a new apartment for me, Tilly, and the cat. The place I'm looking at would be so much better for us. I hope we get it. The outfits I'm finding for Matilda are also so cute. She's been getting lots of compliments on her name, and just her cuteness in general. I'm so glad the weather is also warming up. We'll be able to go for walks, and enjoy the sunshine. 


I'm so glad I have a wonderful child. Motherhood is getting easier with each passing day. Thank you to those who are supporting me on this journey of Motherhood. I loving being Matilda's Mama. I will update when I have more to say, as the updates come in. 

One step closer to the helmet

 It's currently August 8,2025. We are still waiting for Matilda's helmet. Insurance kept denying her, saying she's not severe en...