Wednesday, September 3, 2014

Lexi celebrated a birthday

Lexi celebrated a birthday on the 27th. She is 5 years old! 5 years old reminds me back when we first started this journey with her "bumpy" and everyone said "they go away when they are about 5." To that I say "yeah right!"


Lexi has healed nicely from her surgery in April -in fact you can barely see her scar, I mean you have to "really" look to even remotely see it. I rubbed a Vitamin E stick on it for about a month when it was time to "massage" the scar. I still put the Vitamin E on the scar here and there (to be honest, when I remember.)

I always get nice letters from people all over telling me their experiences and asking advice but I got a letter yesterday that really touched me! I love knowing that this blog has helped people. I remember frantically searching for "real" personal experiences from people & their journey with hemangiomas and it was hard to find anything other than the "medical facts." And sorry but in our journey the medical facts just didn't pan out. Anyway, thank you Sean, Lisa, and Brenna for writing to me. I wish you lots of success in the rest of your journey! And please update me on Brenna!

If this blog has helped you in anyway I encourage you to write me. I try my best to answer everyone!

Anyway...Happy birthday to Lexi!

Wednesday, August 6, 2014


In a few weeks Lexi will be 5 years old. Seriously where has the time gone? I know there are readers out there that have followed our journey since we first started at the age of 4 months. Can you believe she is going to be 5?!?!

Lexi has healed so nicely- in fact you can barely see her scar. I cannot tell you enough times how impressed I am with how well her surgeon did on her. We had to miss her follow up appointment at the end of July so I have to re-schedule that but it's hard because my husband has been working lots & lots of hours.

If you are debating on surgery -let me tell you now that I do not regret our decision one bit. I believe we did all the right things in this journey with Lexi. Every single situation is different and I get emails from parents from all over with so many different situations but I can tell you the best thing is to go with your gut instincts as a parent. It's normal to always 2nd guess ourselves --but do lots of research and get a lot of different opinions but not "too" many different opinions because then you will be all confused not knowing what to do. As with anything in life DO YOUR RESEARCH.

Friday, July 11, 2014

Healing so nicely

It's July and Lexi's scar is healing quite nicely. In fact most people do not even notice it. I have a Vitamin E stick that I rub on it each night & I massage it. I thought Lexi would give me trouble about this but she does not -in fact I think I've said this before but she reminds me to do it if I forget.

I am so pleased with how well her surgeon did with her and where she put the incision, I cannot say that enough times.

Sometimes I catch myself looking for her bumpy to see if it's "coming back" or "swelling" -Remember not the entire hemangioma was taken out during surgery, only a portion of it. But to see that area flat and not a huge marble bump (sometimes the size of a golf ball) there is such a relief.

We are very happy with our decision to have the surgery.

Thursday, June 12, 2014

6 weeks is up!

Well about a week ago we started letting Lexi do activities; even with me yelling at her every minute "slow down" or "be careful." She did well with the 5 weeks of no physical activity but she got down about it on several occasions saying things like "I wish I didn't have surgery" and "I want my 'bumpy' back." We know it was just that she was upset about not being able to do the things she wanted.

She looks marvelous! I cannot say often enough how well her plastic surgeon did and if you are in our area and want her name shoot me a message and I will gladly recommend her to you! We have started "scar massage" with Vitamin E oil and I thought Lexi would give me a hard time about it but she doesn't. In fact, when I forget in the evenings she reminds me.

I find myself looking for her "bumpy" at times. As weird as that sounds, I know. 

I wanted to share this picture quick that I found while looking through some pictures trying to find something for TBT on Facebook.  As you can see above her left eye her bumpy at that time was as big as a large marble or maybe even larger. That was before any sort of treatment had begun. At that time it was skin colored but blue/purplish in color. She has come a long way! AMEN!

Anyway I felt the need to update because I know there are people looking for updates. Thanks again to all those who have contacted me.  I will continue to update as I can. Please feel free to email me any time!

Tuesday, May 20, 2014

Almost a month since surgery

Well it's almost a month since surgery and Lexi is doing well. All of the glue from her surgery spot is not completely off but everything is healing nicely and looking excellent. I have to say that her surgeon did an excellent job. We go back to her surgeon in July. We cannot believe how "open" her eye is now and how "flat" the eyebrow area is.

We bought her a "Hello Kitty" hat and "Minnie Mouse" sunglasses (she picked them out) for wearing outside to cover her surgery spot from the sun; so every time she goes outside she is wearing these until her 6 weeks are up.

I want to thank those of you who have written to me regarding Lexi, for the comments on here, and who have sent her cards. You guys are awesome! 

If anyone has any questions or needs help/advice please write to me I do not always check that email but I am trying to check it more often so I can answer my emails from each of you. 

Thursday, May 8, 2014

1 week and 2 days post surgery

Here we are a week and 2 days past surgery

Sunday, May 4, 2014

May 4th - 5 days post surgery

Lexi is healing nicely and dealing with everything quite well. She was having issues with not wanting to look in the mirror but she's starting to get better with that now. I'm having a horrible time trying to keep her from running and being crazy. I yell alot but that's just because I am so afraid of her falling on it. We have already noticed that she no longer has such a droop on that eye. The "bumpy" was always pushing down on her eye therefore it gave her eye a droop but we noticed how much more OPEN her eye is now!