Friday, March 13, 2009

H Info...He's back...

Well, I guess now is the time to admit it...I freaked out and pulled Sam off the Propranolol about 2 weeks ago. There were scary stories circulating and she had started to get fussy, etc... So, we went into see Dr. T and had a long talk with him. He was kind enough to have researched the scary story I had heard about and talked with us about that. He also consulted many other departments within Phoenix Children's Hospital and assured us that the dosage that Sami was taking were completely safe. But, after all of this he still thought that it was a good idea to take her off. Which, I thought was very noble of him seeing as he was basically taking care of me and my worries, rather than Sam. But, as he said, he has to take care of me as well as her. Am I pitiful or what? Anyway, she had her last dose almost 2 weeks ago and it is definitely growing back. It is the angry red color again and is starting to swell under the suface. Her little lip is stretched again and is very thick. All of this in just under 2 weeks! Really, to be honest, it just plain sucks! So, yesterday we all drove downtown to Phx Childrens and met with Dr. H. He is the Sr. member of the dermatology dept and was very knowledgeable. His staff was also amazing!!! I'd go there just to see his medical assistant. Again, here I am being needy... Anyway, he agreed that we should start the Propranolol again and he raised her dose a bit - because she has grown a bit since we started. When she started she weighed 6/12 and now she is 8/11. So, she will be taking .65ml 3 times a day. We are hopeful that we can get her back to where she was 2 weeks ago. And, now that the ulcerations are almost completely healed she should be doing just wonderfully. The most important thing has always been to Pete and I that she not be hurting. Yes, we'd love for her H to just magically disappear - but that's not going to happen. It's here - and we will be dealing with it for years to come. But, our little girl is just so happy and healthy right now that what her H looks like is not of major concern. As long as it is not hurting her. Of course, we don't want her to be affected by what others may say or do regarding it, so we that also motivates us to get it under control now so hopefully she will never know it was there. That is my hope anyway...

Aside from the H Info, Sami is just doing wonderfully! She is getting bigger and stronger by the day. She is back up to gaining an ounce a day - which will put her at a 2 pound gain per month, instead of the 1 pound I was anticipating. Which is wonderful! She's starting to really get control over her head and loves to be carried so she can look all around. She's smiling at everyone - especially her Daddy. Why does he always get the girls? I guess I have 2 handsome boys, though, so I won't complain.

The other kids are well. They are all on Spring Break this week and next and are very happy about that. We haven't done much so far - but they have great plans for us. Bowling, the pizza place, swimming, etc... And, Tuesday is Jesse's 5th Birthday! So, we have planned a drive to see Daddy's work and have lunch with him. After that I'll take the kids and we'll be going to a Diamondback's spring training game. Of course, all dressed in green!

3 comments:

Hanna said...

Hi,
May I ask you what is the scary story? My baby is taking P for the last 7 weeks and I am really concerned about that...Is there any side effects that you heard of...? I am so worried... Please let me know. I gave you my email address if you wish to email me about that.
Thanks
Hanna

My name is Sherri said...

Steph, you are doing great and I think you really found a wonderful doctor. When doctors admit they have to treat family members as well as the patient, thats something really special! Trust me, I know. I see it every week at work! Hang in there dear. Sam is lucky to have you as a mom!

Kate said...

I think I know the scary story you are talking about...I heard the same one. Although, there is more to it than just what was circulating...email me and I'll let you know what Caroline's doctor told me about it. It might make you feel better. I hope I didn't add to the stress by Caroline's fill-in doctor overreacting about the blood sugar thing. If so, I'm sorry!! Would your doctor consider a home health nurse to check on her BP a few times a week to give you some peace of mind? That made me feel a lot better! Hang in there! Thinking of you! :-)