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Friday, March 27, 2009

first pedi

Today H and I went to get pedicures. It was her first and a momentous day. It was a celebration (I have her permission to write about it). Finally, after a long time and lot of struggle and embarrassment and what not, H is dry at night!!!

Shortly after H was born we noticed that she was getting what we thought was a rash. It never got better and in fact continued to grow. Sadly it wasn't a rash. It was a hemangioma. A hemangioma is a benign vascular tumor, H's grew quiet large. It was all under her diaper, down one leg and on her foot. Later we found out it was also in her lung, spinal column, pelvis and the back wall of her bladder. When she was little she suffered greatly. She would get ulcers on her hemangioma and when she would wet or poo it was sting and she would scream. She bled a lot, hated baths, hated her diapers, and cried and cried. For over a year. It was heartbreaking. We took her to several doctors and were told there was nothing we could do but that it would most likely go away by the time she was 5. Which it has not, although luckily it is much much smaller. We did eventually find duoderm patches which we put on the ulcers and that helped some.
Somehow we all survived that first yearish and eventually she stopped getting the ulcers and had less pain. I think this really affected her a lot. Imagine if you spend your first year of life in great pain, your personality would be altered in some way. H has always been a challenge and I really feel that it was because of this very difficult start.

Once the pain and diaper problems were done we thought we were through the hard part and in many ways we were but that didn't mean her struggles were over. While she was very little we had to watch and make sure her spinal cord didn't get strangled by the hemangioma. I feel very blessed that it did not and she's always had good motor skills.

When it came to potty training we discovered that she didn't have the sensations that she needed to know she needed to go, and with the back of the bladder covered in hemangionma she also didn't have the ability to void completely. When she has to go, she has to go right now! I think she's got a pretty good handle on it now and is learning to take potty breaks on a schedule. I didn't know if we would ever get night time dryness though (and for a long time I didn't know if we'd get it down in the day either, but we did). Then last week during spring break, late one night, like at 11pm, she told me she was out of "good nights" and I was very unhappy at the news. I told her I had been feeling like she might be ready to try and go through the night. I really had been thinking about it just the past few weeks and for some reason had a hunch that she really could do it. So she went to the bathroom and went to bed. About 3 hours later I woke up with a start and ran to her room and woke her up to go, and she was dry. Same thing in the wee hours of the morning. When she got up for the day we had had a successful night!! Miraculous!!

We decided to try again the next night. Same thing, I woke her up twice and she made it. The next night I only woke her once and every night since then we are down to only getting her up one time and she's been dry EVERY DAY!!!!! I never thought we'd see the day. Really. And I am so excited for her.

This has been such a good year for her, she's grown and matured and is helpful and much more calm and settled and sweet as can be. And now she has passed this next big hurdle.

I know this is not the end of hemangioma issues for H but hopefully all the others will turn out as well in the long run. Anyway, I am not one to borrow troubles from the future, who knows how things will unfold anyway?

Meanwhile this was definitely worth a celebration!!!


Anonymous said...

H has indeed grown into a delightful, helpful, bright and loving young lady. She has grown so much in the last year.


Head Nurse or Patient- you be the judge said...

Hurray for her! I am so glad! Not even remotely for the same reason, but we deal with some of that with my youngest. Only for her, it started out of the blue in Kindergarten, and it has been one solid round of tests, infections, accidents, and tears. I am so happy for your daughter! I also know-personally, how great that must feel for her.

marcia@joyismygoal said...

I am so happy for you H having had some similar experiences when I was young --I know it is a great relief to you

Yvonne said...

You all must be so happy. What a struggle that must have been for her (and all of you).

Yes, it would certainly be cause for GREAT CELEBRATION.