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!

Wednesday, April 30, 2014

4/29/14 Surgery Day




The photo above was taken a week or so ago -as you can see in this picture- her bumpy above her left brow is quite noticeable.

The picture below was taken in the morning the day before her surgery. This is actually a good day for the "bumpy." 

This picture below with her Minnie Mouse doll was taken at 5 in the morning the day OF the surgery. As you see her bumpy looks more flat and barely noticeable. We have noticed a huge trend over the past few months. It seems that later on in the day is when her "bumpy" gets larger. Also it's all in the way the picture was taken and how her facial expressions are on how the hemangioma looks. 


The day of surgery we all had to get up at 4:30AM. We took our oldest daughter Jaden with us (who is 8) because that was just easier for us to do rather than trying to get someone to babysit with her. We were all up and left the house by 5:30 and headed to Childrens Hopsital of Pittsburgh. We went to the one in Swickely which is further than the one downtown Pittsburgh, Pa.

The wait wasn't long getting in and I have to say that everything was very organized. I went back with Lexi because her Dad and I could not both go due to we couldn't bring our older daughter with us and she was not allowed to sit in the waiting room a lone. I met with many different doctors and nurses that were going to be caring for Alexis and every single one of them were pleasant and absolutely great with her. I actually was sitting there for a while second guessing the surgery. I think it's because many of the nurses and doctors could not even see her "bumpy" that day. I felt like they were looking at her and even looking at me judging like "Where is it...your putting her through this for that?" I mean her bumpy looked great that morning. Even when the surgeon came in she said "It looked much worse 3 weeks ago when I saw her." And I said "Exactly, that's what it does."  And I have to add here that this surgeon NEVER pushed surgery on us like some may think a surgeon would for $ reasons. Not this surgeon whatsoever! She always told us to wait for this amount of time, etc. to make our decision. We ended up waiting at least a year before the final decision for surgery came. We all kept stalling the surgery in hopes that her "bumpy" would go away on its own. After her saying that it look worse previously and looking puzzled as she was trying to mark her face with the marker, I was even more unsure if I should go through with the surgery or not. But you see that's what Lexi's bumpy has done for years now -one minute it is huge and quite noticeable and the next minute it is not. That's why we kept trying to give it time to dissolve on its own.  It just never did. Anyway Lexi chose the "strawberry magical mask" for going to sleep. After I suited up in a white funny looking jumpsuit, hair scrub, and mask - I got to go in with her to the operating room -I held her hand as they hooked her up to monitors and such and gave her the mask. That was hard. But when it really got hard was when she started to fight the mask and her eyes rolled back into her head and her body started twitching. Obviously I was terrified and I guess the look on my face showed that as the doctors told me "That's normal." And she fell asleep. They then escorted me out of the room. She did wonderfully throughout the whole thing. She never cried or even whined. She was so brave! The only thing she didn't like was the scrub shirt they gave her to wear. She hated it. But I got her mind off of it while we waited in the one room and we played "I SPY." They put her IV's in after she was asleep. After I left the room I cried. I was mad, I was upset, I felt like I was going to look at her afterwards and feel so darn guilty because "I did this to her!" I felt like if something God forbid would go wrong it would be my fault because I put her in that position in the first place. I went out to the waiting room to be with my husband and daughter and I had to leave because I knew I'd loose myself in tears at any given moment. We all walked outside the waiting room and I snapped at my husband saying the very things I just talked about here. I went back into the waiting room and we waited an hour and a half and finally the surgeon came out to talk to us. She did not take the entire hemangioma out -in doing that -it would leave a huge dent in her head. However she took the majority of it out and it is being sent to pathology and we will get the results back in about 10 days. She was telling us about the surgery and she said "I truly think we did the right thing" and went on to explain why and it's position of where it was at. I looked at her and almost cried and I said "Thank you for telling me that because I was sitting her second guessing myself for the last hour or more." She said "No we did the right thing because some hemangiomas just do not go away on their own. Now if this would have been a hemangioma in a different area or even a different kind of hemangioma -sure you could just leave it there but like I said so many different times there are so many different situations. Lexi's was by her eye and nose. And looking at her front on you could see the difference of her face shape in comparing one side to the other. Also because of her hemangioma's location you don't want it hindering her eye sight or nasal cavities. Anyway her surgeon made me feel so much better. We waited another 45 minutes and a nurse came to get me to come and see her. I went back and I actually thought I had the wrong room for a minute because I saw a woman sitting in a room holding a little girl with blonde hair in her lap -she was holding her in such a way that I thought SHE was her Mother. No she was not but she was a nurse who was caring for my daughter. After spending time with this nurse for the next hour I swear she was the most gentle and caring nurse I think I have ever met. Lexi was in and out of it for the next hour and after vitals were taken her surgeon gave her the okay to go home. She stood up at one point and said "Mommy you can wait out there I can take care of it." She stood up and was wobbly and I said "No honey you can't" She is so independent -always has been. During surgery she kept her pants and underwear on that she wore to the hospital, well she peed her pants during surgery so the nurses cleaned her up and gave her little hospital pants. I luckily had brought a spare of clothes in her bag that was in the waiting room with her Dad and sister. (something to remember for all of you parents out there: take extra clothes! lol!) I asked this nurse if her Dad could come back and see her quick and she said yes and went to get him, she sent him back as she sat with our other daughter because she wasn't allowed to be left in waiting room a lone. Hospital rules. Anyway we were finally discharged and Lexi got a ride in a wheelchair a long with her Minnie Mouse doll. I sat in the back with her for our long car ride home and she slept most of the way. She came home and after she could walk a tad better we gave her a bath and then she sat on the couch where we all kept taking turns holding ice on her eye. 

On the way home we stopped & got her a "get well" balloon and that made her feel excellent! I'm thinking about making her a card and sending it in the mail to her to make her feel good as well. She loves getting mail! 

She was all smiles last night regardless of what she went through that day:
This morning she got up and her eye was really swollen and she has a huge black eye: (but that is to be expected)


She has a small incision across her eye lid. 

Here is our biggest challenge: She cannot go outside and play for 6 weeks. She can go out but we have to watch her closely. She can't get much sun (will cause more scarring), she can't ride her bike, she cannot swing on the swing set, she cannot play ball or be around anyone who is playing ball. She basically cannot do anything that would make her fall and bust it open OR something hit her surgery area and bust it open (like a ball) She is not happy about this whatsoever. And I know it's going to be a rough 6 weeks for all of us here. This won't be fun. lol! 

Today she seems tired but is doing okay. She doesn't like looking in the mirror at herself because she doesn't like the "tape" on her face. I tell her that she is beautiful no matter what. 

I found a few pictures that I kept on this blog before and I am going to reshare them (some I have cropped or put new "water-marks" on them)

This is pretty much how her "bumpy" started out:

It grew slowly until is puffed out to this large: (this was taken in Childrens hospital before she started the first 72 hours of propanolol) 


After two doses it went to this:  (You can clearly see the difference)
So yes propanolol worked for the time being but I honestly think that it also "stunted" the growth for a few years and then it decided to grow again after she was weaned off of all medications. I have pictures years after the above pictures and her "bumpy" was completely flat and barely noticeable. And then within the last year and a half it started to become noticeable again. 

I will continue to update this blog as I can. I am going to try to take pictures daily of the healing process. I am going to publish this without much proof-reading simply because I know some of my readers are anxiously waiting for updates. I have to tend to Lexi so I will have to proof -read later once she is sleeping. 

Thank you for your continued support and feel free to message me with any questions you may have! 

I want to thank those of you who took time out of your day to text, call, email or just shown your support on Facebook. 



Monday, April 28, 2014

Tomorrow is the big day

Well tomorrow is Lexi's scheduled surgery -I do not know what time it is because I am still waiting to hear from the hospital. I don't know why they wait until the "day before" to tell you the time & details. For people like me, who is a major 'plan ahead' person - it literally is a pain. We actually thought we might have to cancel because Lexi keeps sniffling. I have been monitoring her temperature though and so far she seems okay. But if something changes the surgery will be canceled.

I want to take the minute to say how good I feel that I have helped so many people out there who have been following me. I cannot believe the people who have reached out to me and I am so happy that I have helped so many of you and I am blessed that you contacted me to let me know. It feels good to know that I am helping people by keeping this blog. Please feel free to contact me anytime!

I also want to thank those of you who have written -wishing us good luck on Lexi's surgery and for all of your kind words. I've had complete strangers reach out to me and I thank you all! It feels good to know that others understand where we are coming from & the journey we have traveled. I have actually met some pretty nice people through keeping this blog and have kept in contact with for years now and I hope to get to know more of you!

Anyway I will be back to update when I can.


Updated: Childrens' Hospital called and we have to be there at 7:15 AM. Surgery is scheduled for around 8:30 AM




4/28/2014
Notes: Two days ago I noticed some color on Lexi's "bumpy." Down towards the bottom of it more towards her eye:  she had blue and red color. Up until the last -I don't know 2 months or so -her "bumpy" had pretty much stayed "skin" colored. This tells me its "resurfacing" or "swelling." Or would it be growing? Who knows..it seems no one seems to.

PS: I have thought about starting a private FB group for others who have children with a hemangioma. If you would be interested in joining the group please drop me a line & let me know.