Wednesday, December 3, 2014

Pictures that I've promised & our journey comes to an end

So I have decided to share some pictures -after many have written and asked me to share some pictures. I used to have pictures on this site but as many of you noticed I removed them. There's just too many rotten people out there in this world and I wasn't taking the chance they would target this blog or my daughter so that's why I've taken them down. Here are a few that I have found for now:

This was taken in 2009 (I put the "copyright" on it in 2010 when I was making this blog) and Alexis was only a few days old. As you see you cannot see any "bumpy."




When it first came out that we noticed it -it was actually smaller than it is shown in this picture. But this picture was taken in Nov. of 2009 (roughly around 3 months old) 


Not long after it go to this point:




Moving forward quite a bit, this picture was when she was in Childrens Hospital and getting ready for the 72 hour stay for treatment of propanolol. As you can see it got huge. 



I know it's hard to see in this picture but it's very large here too. This was taken in her stroller while we were taking walks around Childrens Hospital. But...if you notice in this picture a lot of the color was no longer there...it was more skin colored. When we first arrived at the hospital it was more blue in color.


Moving a few years ahead (after the treatment of propanolol) you can see where it is flat and barely can see anything. Also notice how it is now "flesh colored" and no longer blue/purple/ or red. 


After the consultation with the plastic surgeon I made this timeline to share with the one nurse that I was working closely with through email and phone calls. You can see that in 2011 and 2012 her bumpy was flat but in 2013 you can clearly see how it had begun to swell up again. And the last two pictures are in the same exact day hours apart. 

This picture below was taken a week or so before the surgery: If you notice a lot of the color left her "bumpy" after the years of treatment of propanolol and there was just a bump there and it was skin colored. I believe it was rising to the surface and once it got closer to the surface the color would have changed. Remember Lexi's hemangioma was a "deep" hemangioma. 




This was taken an hour before surgery:

As you can see after we stopped the propanolol things were fine for awhile and then her bumpy had swollen again. I think it was growing again. Did propanolol work? Yes -at one time you couldn't see anything -it made her "bumpy" as flat as a pancake and strangers never even noticed. We knew it was there but no one else seemed to notice. Then it started to "re-surface." Maybe the propanolol "stunted" the growth process of what her "bumpy" 'needed' to do? I don't know but it was NOT fatty tissues that were left behind as too often is told. Do I think if we wouldn't have done the propanolol there WOULD have been more fatty tissues and extra skin left behind which would have made the surgery more complicated? Yes. So propanolol DOES work but in our situation Lexi's "bumpy" decided to come back. We don't know why but it did. And I cannot stress enough to anyone in the same situation reading this to make sure you get an ultrasound on the "bumpy" before anyone tells you "it's just fatty tissues left behind." I knew that was wrong in our case. That one doctor who told us that should never have told us that without doing an ultrasound first. I will never forget her saying "If she were older I'd just take out the fatty tissues here in the office." Thank God that never happened! I knew by the way her "bumpy" was swelling up & down that it was "blood pressure" related and indeed there was blood flow there and it was still a "bumpy" and not fatty tissues. When the tech at Childrens did her ultrasound I saw with my own eyes the "extra" blood flow in that spot proving that it was still a bumpy and NOT just fatty tissues. So please always ask for an ultrasound before you just believe that it is fatty tissues left behind from the dissolved bumpy and walk away and "wait till they grow and the skin stretches out." (words too often told by "non concerned/ think they know it all doctors!") If you think about it...with Lexi -if it was just fatty tissues left behind then why would it have been flat for a long time and then suddenly puff up again? It would not swell up and down. And I do know that we could say that it is because of blood vessels and such which could cause the up & down fluctuation but still...So please go with your gut and remember not all doctors are always right. And if you remember way back in this blog I did say that the ultrasound tech told me flat out "Some hemangiomas will NOT go away on their own."  It is just the kind that they are. Which I believe he said were called: Cavernous Hemagiomas. Most of these are the "strawberry" ones you find on the "outside" of the body but I believe Lexi's was "inside" but it kept rising to the surface of the skin. Her's was close to her eye socket and near her brain. 

Again, I thank each of you who have contacted me. It truly means a lot that I have helped so many people. If you have any questions please don't hesitate to reach out to me. It may take me a bit to get back to you but I do eventually. I would like to also thank close friends who have sent good vibes and who have kept up with us through this journey. It's been a long journey that I think I can say has finally come to an end. Thank you each for the advice you have given along the way. And to the complete strangers out here who have also given us good vibes a long the way, thank you! My best advice I'd give anyone out there.....go with your gut and do your research! I cannot stress that enough. Educate yourself and research, research, research.......

And by the way I do plan to come back and update from time to time (even if it's years from now)  so please keep checking back. 

Merry Christmas and Happy New Year to each and every one of you! 

Lexi's Mom 



Tuesday, December 2, 2014

December 2014

Here is Lexi from Halloween:




We honestly can barely even see the scar anymore. I know where its at so I can "faintly" see it in person & up close.

I've had some people contact me for pictures on Lexi's progress. I will try to put some of the best pictures up that show the different sizes her hemangioma was over the course of  5 years when I can, I will try to work on that later today so check back.

Again I thank everyone who has written to me and given me positive vibes and has told me their stories.

Check back soon!

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!"

 Anyway....

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

August

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.