This is what happens when you're the little sister...

It's Sunday morning, I put Sam in her highchair so she can watch the ceiling fan {her fav thing} and I start to unload the dishwasher. This is what I find when I look up...the boys decided that her tray made a great ramp for their Tech Decks. You can't see it in this picture, but they had given her one, too. It's sort of siting on her chaest by her hand, so she can "hold" it. LOL

H Info...There is definite change!

{I went back and forth about posting this. I just don't want my baby to become some sort of science experiment - where people are only looking at her H and not HER. So please, if you have found these pictures, look closely with your eyes AND your heart... } {You can click the photo for a larger version}

And, even better is that my sweet Sami is coming back. The yucky steroid injection made her feel really bad. They told me it might make her hungrier. However, she was also grumpy, sweaty and her eyes looked really weird to me. Almost like she was high. Apparently hyperness is also a side effect. Which would explain the wide eyed look she has lately. Or, as my friend Jen puts it, her "I'm gonna kick your butt" look. LOL Which is not my sweet girls temperment at all! This was all learned after calling the doctor and a trip to Urgent Care. Not a fun weekend, needless to say. However, there is progress - Sam's H is definitely shrinking and lightening in color. I just don't know if making her feel so rotten was worth it. I mean, does anyone who loves her care what she looks like? No. So, why put her through this? I know, they say that it may interfere with her eating. It just all seems so selfish to me. I don't know where we'll go after this. I hope that this treatment rwill shrink it enough to lessen the concern about it. Also, I pray that after the steroid injection wears off that the H will not start growing again.

H Info...Saturday Morning Update

It's definitely changing, almost fading maybe? However, the size remains the same. I believe it changes color first, though, and then shrinks...

H Info...There is change...

So, Sami's H is reacting to something. I'm not sure if it's the Propranolol or the steroids, though. Last night it was purple and grayish white. However, this morning it has started to get red again at the edges. I don't know if this is good or bad...

H Info...Back from the Doctor

Jesse and I took Sami in to see Dr. T this morning. He wanted to make sure that the Propranolol wasn't affecting her blood pressure or heartrate too much. Turns out it didn't change at all since Tuesday - so that was great news. Plus, we agreed that her H was lightening in middle to a gray color and was also a little softer in the center. However, the size had notchanged at all. So, it was affecting the top layer of the H, but not the deeper part. We also got to meet his partner, Dr. W. When she saw Sami she thought it would be best to do a steroid injection today. I was really nervous, but I trust them and I knew that if we didn't do this we were headed to the oral steroids next week. Although the injection wasn't pleasant for her the oral steroids would have been much worse. They would upset her little tummy and possibly make her lose weight (which she cannot have happen), lower her immune system, and interrupt her sleep. All adding up to one miserable baby. I just couldn't stand the thought of her on them. She has so much to do and to see and to experience in the next few months. If she were on the oral steroids she would be miserable and wouldn't be able to go out and experience things. I just think she deserves so much more than that! And now she doesn't have to go back for another month. Which will let us finally just breathe in our sweet little girl!

No pictures yet, but I have taken them and will update this post with this mornings when I get a chance.

H Info...Sami Update

Well, we have had an eventful few days with doctors! I don't think I had posted that I had gotten Sam in see a doctor at Phx Children's Hospital, for Tuesday. Anyway, we were still going along with Dr. A's plan of doing the injection. So, on Monday the surgery scheduler called to set up the procedure. We still had a number of unanswered questions, so Pete asked to talk to someone so we could get some answers. Well, the PA who I had see wasn't available, so the scheduler tried to answer them as best she could. After speaking with her Pete did finally get to speak to the PA. Now, when I went into the office this woman rushed in to the room (wearing a shirt showing her belly mind you) and really just left me with a bad taste. However, I thought it was me and just decided not to worry about her. When Pete hung up after talking with her, though, he commented on how snotty she was to him. So, I felt justified in my dislike for her then. :) Because, if you know Pete, you know that he can deal with almost anybody and not be bothered. So, if this woman rubbed him the wrong way it surely wasn't just me. Anyway, aside from the cold attitude of both the medical professionals at this office there were some major communication conflicts that just really bothered me. First, Dr. A had told me that to put her out for the procedure she *may* have to have a breathing tube b/c of her age. That he would check on it. Well, the PA insisted that ALL patients get a breathing tube no matter their age. This is a minor issue, I know, but why don't they agree on this? The other thing that bothered me the most was that Dr. A told me there was absolutely no risk to putting her out and also that he wanted the procedure done in about 10 days. Well, the PA tells Pete that the dr isn't in a hurry for this to be done and that we should wait until she's 12 weeks old b/c then the risks of putting her out are lower, the same as an adults. So, apparently there are risks! I don't know - they were cold and they seem to not be communicating well - I honestly just didn't like them or want anything to do with them. I was sooooo glad that I had kept the appt with Phx Children's for Tuesday! So, Tuesday we went to see that Dr. T. I was nervous b/c I knew he was young and I worried that I wouldn't like him. However, when we arrived it was wonderful. They took her back, did a weight ( 6 lbs 11 ozs by the way!!!) and took her blood pressure. When Dr. T came in he was sooo nice. He shook my hand (the other guy just came in sat down and stared at me) and then spoke in such a kind way about Sam and her H. Plus, the best news ever is that he wants to try the beta blockers on her!!! Here is a link to more info: http://content.nejm.org/cgi/content/full/358/24/2649 When I asked Dr. A for them all he said was "no, no, I don't do that". Whatever... Anyway, we started the beta blockers this morning, she will take them 3 times a day. We will go back on Thursday to have her blood pressure checked and to meet with our Dr. T's partner who has also been using this medication with great results. I called our ped, Dr. G, and cleared it with him. He is very supportive of trying it and says that he is not concerned at all that she will be negatively affected by the drug. I was so happy to hear that because I just love our Dr. G and really value his opinion. Plus, it sounds like we ended up in the right place. When I told Dr. G that we were at Phx Children's his forst words were "Excellent!" So, that is where we stand now. I'm so hopeful that this will work for her. Please say a little prayer that we will see good results and that she won't have to deal with any harsher drugs or more invasive treatments while she is so young. I'm going to post daily photos so that you can all watch her progress with us.

P.J. is E.I.G.H.T.

January 20th, 2001.

The day our little hellion came screaming his way into the world {and he hasn't stopped since, but don't tell him I told you so}. My water broke at about 6 am on a Saturday morning 11 days before my due date. I always thought that PJ had too many things to do in his life that he had decided that he had to get out early. But, as I think on it now I wonder if he might have just been really ticked off to have been booted out those 11 days early. LOL Whatever the reason, that boy has a fire in him that most days nobody can put out. Now, it's not always a bad fire. Most days it's a wonderful fire. An unbridled enthusiasm to get out and do whatever it is he has gotten into his head to do that day. But, when it's a bad fire, you'd better watch out! LOL I like to call it "passion". And, there's nothing wrong with passion. I say this because I could be called a little passionate at times, too. And, again, there's nothing wrong with passion.

So, here's to Peter James, or, as we like to call him when he's being "passionate" Pure Joy! Happy Birthday ~ we love you!

6 Pounds!

It seems that with all the running around I've been doing that I forgot to tell you all the good news... Miss Samantha has hit 6 pounds! I honestly believe she is gigantic. It's not until she is out in public and people start commenting on how tiny she is that I realize that 6 pounds is really not that big. haha However, we live in Sami World around here and compared to 3 pounds 6 pounds IS gigantic.

My sweet, sweet Sami

I am so happy to have gotten this picture. Not great quality, but it is perfect to me. You can just see her sweetness in this picture.

H Info...Sami Update

Sam has seen 2 doctors this week. We saw the ENT on Tuesday, however after he saw her he thought another doctor would be able to treat her better. Turns out that the dr he recommended had just moved his practice here and is a pediatric plastic surgeon trained in vascular birthmarks. So, this was terrific news since I had thought that we would have to travel to NY to see such a specialist. I called his office when we got home and got her in for Weds. I was very excited to see him and had very high hopes. Unfortunately he just didn't feel right to me. I don't know what it was. I just love our ped so much and I even really liked the ENT he sent us to. This guy just didn't leave me all warm and fuzzy feeling. I don't know if that's necessary, though. I know he was very knowledgeable and I'm confident he will treat her right, I just wish I loved him more. Anyway... we talked, he measured her H and took pictures and we have decided to go forth with treatment. It will be an injection of (insert drug name I forgot), to be done in about 10 days. It will be done under sedation and she won't feel anything. This drug is supposed to collapse the blood vessels feeding the H and stop it's growth and maybe shrink it a bit. One thing I liked a lot was that he will call the procedure off if when he sees her the H has not grown any since yesterday. I think that's great - makes me feel like he's not going to do anything that's not necessary. At this point the H has spread and is into her lip. Which means that she will eventually need surgury to remove it completely. I guess the lip is a tricky area. He guesses that she will be about age 1.5 - 2, or when it has completely stopped growing. I'm still a little gray on the whole thing, and I guess that's why I feel so odd about this doctor. I just feel like I needed a little more from him.
As far as the Dr. in Tucson for tomorrow I have cancelled that appt. That office definately did not feel right to me. The woman I talked to made it a point to tell me they would not give her anything to stop/numb the pain during the procedure because "she's just a baby and she won't remember it anyway". That statement actually made me want to vomit. I'm so glad I decided against him. I called to cancel the appt yesterday and it turns out that they had her scheduled her for a laser treatment! They haven't even seen her yet and they have decided on her course of treatment! Needless to say we are not pursuing anything else from this doctor. I'm still not completely at peace with the plastic surgeon, but if surgery is inevitable it would be a peds plastic surgeon we would want to do it.
As far as our sweet Sami goes, though, she is wonderful and sweet and completely happy! We are so lucky to be her family.
Oh, just have to add a little story about Jesse... As I was looking around for info on H's on the internet I was looking at some pics of other babies with them. One little boy had a very large one on his face. From his forehead, down his cheek and onto his chin. Jesse walked by and looked at him. Instead of being shocked, or saying something negative my sweet little guy took one look at that baby and said "Wow, that baby's angel sure gave him a lot of kisses". Sam is so lucky to have such a great big brother!