Dear Sarah,

This post has taken me a few days to type. Honestly, my extreme emotions have taken me by surprise. As you well know, I am never at a loss for words. But, since we first hugged on Tuesday my head started to swirl.

It took me a few days but I have finally figured out why. Whenever I am face to face with people, I tend to be guarded because Paige speaks before she thinks. Imagine how stressed I should have been. Paige in a hotel filled with blind people. I was waiting for her to start asking everyone what medical condition caused their blindness. She has been known to walk up to complete strangers and start asking questions.

But, from the first moments of our time together I felt safe with you. I knew you would not judge us if Paige let her curiosity show. Safety. What an incredible gift you gave to me Sarah. What an incredible gift you gave to Paige. She asked questions, you answered. You never made her feel bad for wondering.

Within minutes we were all laughing. Paige was completely drawn to you and your incredible spirit. So were Jason and I. So were many others. Your helpful nature came shining through.

During the ride home Tuesday night, I was already looking forward to our Friday visit. Paige didn't stop talking about how much fun she had and how much she loved spending time with you. But, it was then that I realized how much this world needed to change. That's when my emotions got out of control, very quickly. Our trip to Target was a huge step into your reality. Before that day I never even thought twice about many of the restrictions that you face on a daily basis. You are so amazing. You make it all seem so easy.

Friday came and I was so excited to be spending the day with you and Kevin. With my crazy emotions in tow, Paige and I practically ran down the hotel hallway to your room. Before we even got there we could hear your laugh. Paige smiled really big.

She had a blast that day. From playing with Loretta, getting to go with you to try out the possible currency options, seeing how your computer works, listening to your music, and even being turned into a blind child. She loved it all.

She learned some pretty hard lessons that day too. Seeing the reactions on the faces of sighted people was very difficult for her. But, being that she was in the safe environment that you created, she was able to learn from what she saw.

Sarah, I am forever grateful for the time we spent together. You are an amazing woman. I know you won't agree with me when I say that you are one of the most courageous people that I know. You would tell me that you are merely doing what has to be done. But, there are plenty of people out there who would never venture into unknown territory like you have done. You are an inspiration to many.


I could not end my letter here. There are a few more people that I need to mention.

Michelle,

I really enjoyed getting to know you. You had no idea about this but you said something to me that brought tears to my eyes. The first day we met you said that you liked my blog because I "tell it like it is" and you were glad that I was out there talking about the issues. You have no idea how much that meant to me to receive such validation from a former preemie. I can't thank you enough.

I had so much fun spending time with you on Friday. All that laughing we did while walking the dogs was wonderful! You made us feel so welcome. I look forward to reading your journal and getting to know you better.

Kevin,

Oh where do I begin? You are one very special person. You are one of the most open minded people that I know. You treated me with respect after finding out (thanks to Paige's openness) that our religious beliefs are quite different. That's a rare quality nowadays. I really enjoyed our lunch chat! Oh, and your sense of direction... could I borrow it? If it wasn't for you, we would have gotten lost on our return trip from Target and our walk back after lunch. I sure will miss your sense of humor too!!

With much love to all of you,

Stacy

OCD and My Thin Skin

First off, I am thankful to those of you who have stuck around. It has been a crazy time in our house. Between doc visits and out of town guests, we all haven't slowed down since school let out at the end of May. I am going to be around much more now that our chaotic life is calming down a bit.

Now on to my good news...

For those of who need to be brought up to speed: Our daughter has very severe OCD. Her compulsions have ranged anywhere from counting objects, harming her brother, breaking things, all the way up to harming herself. Her most recent battle has been skin picking, which has been going on for over a year. Her psychologist worked with her and finally suggested that we see a pyschiatrist for meds. It took quite some time to find the right mix. She ended up on Zoloft and Resperdal. Her psychiatrist only wanted her on the Resperdal for a short time but she has been on it for almost a year because the skin picking was out of control.

At the worst part of her ordeal she had over 100 open sores. We really thought that she would never be able to stop. Medicine wasn't helping, cognitive behavior therapy wasn't helping, rewards weren't helping... nothing. Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.

Well, her psychiatrist was now convinced that there had to be some sort of congitive behavior therapy that would work. He had us go back to her previous psychologist and ask her to work with Paige.

The psychologist gave Paige a rubber band to wear around her wrist and told her to snap it whenever she felt the urge to pick. I was very leary because Paige likes pain. I was worried that she would snap the rubber band excessively, causing welts. The psychologist said that it was ok if she caused pain. She said that Paige has to replace the pain felt during skin picking with another pain, in order to surpress the compulsion.

At the start of the program Paige had over 40 open sores (and over 100 scabs).

It's been about 3 months now and I am thrilled to report that she only has 4 scabs! They aren't any open sores!! Only 4 scabs!!! We are so proud of her. We are seeing her compulsions come out in other ways but they are not harmful and they are quite manageable for her. They best part is that she is proud of herself too. We are headed to the psychiatrist this week. He will be so proud of her too. The next step will be weaning her off the Resperdal. Please wish us luck! We've heard some horror stories about the weaning process.

Now on to my thin skin...

I have been jumping out of my skin with excitement over Paige's amazing accomplishment with her skin picking. Since I hadn't had a chance to post the good news on to my blog, I had quickly mentioned it on one of the on line groups I am on. I had planned on posting a quick update on my blog the next day but then I got suckerpunched. I received an email from someone telling me to read the post of a fellow blogger. A fellow preemie parent blogger no less. My jaw dropped when I read the post. This blogger was basically saying that OCD was the fault of the parent. I felt it was clearly directed toward me since it was me who was just talking about Paige's success.

My skin has thickened over the years. Between my strong feelings about comfort care and my lack of belief in a supernatural being, I have been called lots of names and been in the middle of a ton of controversy.

But, for some reason, hearing people say that Paige's OCD was my fault knocked me on my butt for a bit. I never saw it coming. I shouldn't have let it get to me, but it did. I remember walking away from the computer, head about to explode and there was Paige, right outside of my door crying. She was devastated because of the permanent scars her skin picking had left on her arms and legs. I was devasted too. Her skin used to be so beautiful, like a porcelin doll. Now her skin has hundreds of scars. As I hugged her on the floor I thought to myself, "how could someone be so hurtful and accuse me of being the cause of this?"

A few days went by and I was still devasted. A few more days... still upset about it. A week went by and I was still thinking about it. I was beginning to think that I would be stuck in that funk forever. In that dark time I received a few emails from people who saw what happened. I will be forever grateful for those people because it was their notes that pulled me out of the funk.

I always knew it wasn't my fault but it still hurt. Foolish me! I actually chose not to update my blog with the good news because it would look like I was retaliating against my fellow blogger. Boy was I being childish! Never again will someone rattle my cage that way again!

Pain Response in Preemies

"Methods commonly used by doctors to assess pain in infants may be underestimating the amount of pain they feel, according to a study by UCL researchers."

http://www.ucl.ac.uk/news/news-articles/0806/08062402

Taking a Small Break

I just said good bye to one set of relatives who were visiting from out of state (hadn't seen them in 24 years!) and now I'm getting ready for another set to roll in (who will be here for a week).

I'll be back in a few days with an OCD update and will answer emails and respond to comments then.

I hope every one is safe from all of the nasty weather that mother nature has thrown our way.

Calling All Vomit Experts

I need everyone to head on over to Liz's blog and help her out. There is a video of her daughter vomiting during eating. The docs are out of ideas. I know it's a lot to ask, but if you have ideas and reach out to Liz, please also post it here. My site meter always has hits from people searching for help for their vomiting preemies.

http://lizmccarthy.blogspot.com/2008/05/please-help-solve-our-vomit-issues.html#links

(I think the link will take you to the bottom of the comments. Please scroll all the way up to read her post).

Here is some additional information, from Liz, about her daughter.

Hi Stacy,

Thank you for your reaching out, after yet another day of pghelmy vomit, I
am about ready to throw my hands up and give up (yeah right, how can I give
up).

To answer your questions and more too, (as others have asked me too via
comments on my blog): (I think I'm going to put this in my blog too)

-No nissen, we've refused. The GI has been ok with us not doing one, as K
has gained weight on her own little nice chart (albeit with a LOT of work on
our part making up for the vomit). I truly believe this will not help her.
I know with a Nissen she would continue to gag and get phlegm - it will just
stop the vomit from coming up, but isn't going to solve the problem of the
phlegm

-Her left vocal chord is paralyzed

-She has her tonsils and adenoids (never been looked at), as I hate having
her scoped as she is already so oral averse. Does not have ear tubes.

- had 2 ear infections this year and 2 last year, minor ones.

-she is a very good pooper, never been constipated, EVER.

-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs
straight at night without vomiting mostly.....she could only tolerate breast
milk, any formula and she vomited at night too (this was donated breast milk
so it wasn't "dairy free diet" breast milk. Because she never/rarely
vomited at night, I've always believed that she didn't have a milk issue.
It's when she's awake that causes more problems. As an infant she slept on
in include. NO longer, and was tube fed (BD) laying flat with no problem
whatsoever.

-We had tried all the hyper allergenic formulas at one time or another, and
no reduction in vomit.

-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2
weeks, with no difference in reduction of phlegm

-when was RAS allergy tested, no milk allergy shown

-never had any other signs of allergy (no blood in stool) no rashes (except
for some recent eczema on her feet and ankles)

-I just set an appointment to see an allergist (which is months away)

-it was when we switched to a BD (Blended diet) that her vomiting finally
got under control 2-3 times a day and we could much more rapidly give tube
feeds and we even were able to get rid of the night pump. We still gave her
last BD feed after she went asleep, but we finished by midnight, and she
never vomited. Her BD is milk/yogurt based, (again, remember at night we
could feed her BD asleep with no issues of vomiting and she was lying flat)

- Her vomits are now one of 3 types: - phlegm induced (she tries to clear
her throat and ends up emptying her stomach), gag induced (she's a horrible
chewer and often swallows food whole which results in a vomit) or
occasionally unannounced reflux type vomit (just comes all of a sudden, but
this is VERY rare).

-She's been on prevacid solutabs for almost her whole life (after zantac
didn't do anything, nor did prilosec), then again, we never saw any
difference with prevacid either (no reduction in vomit, I know, PPI don't
stop vomit, just reduce the acid)

-I took her off prevacid about 3 months ago, and felt strongly that her
phlegm seemed to decrease. I just started her back on it again, as I'm
afraid of the damage to her esophagus/teeth from the vomiting., but I happen
to strongly think that it's increased how much phlegm she is dealing with.

-we tried a few weeks on Periactin and went 3 days without vomit and hardly
any phlegm (first time EVER), then she got sick afterwards 3 times back to
back, so we haven't tried that again.

-she now eats 100% orally, only purees and doesn't "like" to eat, especially
when she has all that phlegm in her throat (for obvious reasons) Not a good
chewer, although she tries to chew meat, it takes forever, and for us to get
calories in we have blend her food

-her lungs are doing quite well all things considered, she doesn't have
asthma, has never had pneumonia since leaving the NICU (which typical
refluxers get a lot of pneumonia) (although has had some serious colds that
go into her lungs - one time bronchitis) and has had oral steroids a few
times.

-she never writhed/screamed with eating like you think of "typical"
refluxers, not signs of being uncomfortable except the refusal of eating.

-She was on reglan upon first coming home from NICU, no reduction in
vomiting, stopped years ago.

-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.

Here are my ideas:
- She needs something to stop the production of phlegm. I think I'm going
to take her off prevacid again and see if we get a reduction in phlegm like
I think I did last time) as a trial. I'll put her on zantac to reduce the
acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but
my thought on Dom is that it is supposed to speed up processing time of
food, don't know if she needs this but I've heard form quite a few other
moms that it was a miracle worker for their vomiters.

OK, I just posted all the above on my blog too!

Thank you my dear!

Liz

Those Years Are Gone

Under my post "Guilt Revisited"

Future of Hope wrote:

"Anyways.... My guilt hits me full force whenever I look back at my son's early years. All of the time spent focused on this milestone or that, pushing and prodding for just "one more" skill, all the time spent running from PT to OT to SLP and back again. I would give literally anything to go back in time and get off of that merry-go-round. We lost so much. So much fun, so much "bonding", so much discovering and play. All in search of what was "supposed to be" instead of "what is". If he hadn't spent so much time pushed beyond his limits, would his social/emotional outlook be better? I missed so much that can't be gotten back - so many "firsts" that came so late that they brought with them more anxiety than joy. I was so wrong. I want my baby back. NOT my "preemie", not my "special needs child" but my BABY. the one that I had in my arms, and that I dreamed away."

Not one day has gone by since I first read her comment, that I haven't thought about the emotional impact of her words.

I have often thought back to the beginning years of Paige's life. We had various therapies 4 days a week, for her first 2 years. Physical therapy (twice a week), occupational therapy, speech therapy. 4 days a week of people coming out to our house to tell us all of the milestones she was not reaching and how to help her reach them. After 2 years, the time spent in therapy lessened to 3 days a week and we then saw the therapists at a pediatric therapy facility. It continued this way (some months increasing the amount of visits) for the first 5 years of her life.

Despite all of this therapy Paige still sat up late, crawled late, walked late, talked very late, has tone issues, fine motor issues and has severe sensory issues.

Looking back, do I feel that therapy was beneficial? No.

It was not beneficial for Paige but it was beneficial for me. I felt that I was doing everything to help her. How can we turn away services that are supposed to help our child? After giving birth to a preemie, is any parent in the right emotional state to ask questions as to the efficacy of therapy? I know I sure wasn't!

I have met a few parents who did not put their child through therapy. I fully expected to see a child who had not progressed as far as Paige but this is not the case. All of the children that I have met, who did not have therapy, are exactly where Paige is at... tone issues, fine motor issues and sensory issues.

I've always been upset about how much Paige (along with her Dad and I) had been put through for 5 years, only to be exactly where she (most likely) would have been without therapy. But, until reading the comment left by Future of Hope, I never realized how much I lost.

I'm writing this post so we all can openly discuss the early intervention services. I want new preemie parents, who are desperately searching the internet for information, to know that they have a choice regarding therapy. I don't want to sound as if I am criticizing those in the therapy fields, there is a place for them. But, what I really want to know is how others viewed their therapy time.

Eczema or Ring Worm?

I noticed this round rash on Paige's arm tonight. It looks like both eczema and ring worm. Does anyone have any experience with this? I don't want to put steroids on it if it's ring worm because it will make it worse. Since Paige skin picks (due to her OCD), I surely don't want to make it more noticeable to her. But, I don't want to assume it's eczema and have it be ring worm, which is very contagious. I hate to keep her home from school since there is so much end of the year fun stuff going on.

So, any thoughts? Anyone?