January 11, 2007

moved blog to http://www.xanga.com/VegMama



January 2, 2007

We spent another quiet New Year’s Eve at home.  I think the last time we went out was about 4 years ago when Hugh was still in a band and they had a gig that night.  I have no desire to go out anymore though.  I had too much fun at home cooking with the kids and lighting sparklers in the yard.  Sarah fell asleep around 10:30 which is about two hours later than she usually goes down.  I’m pretty sure Hannah and Jess kept her up because of how excited they were.

At midnight we had our “sparkling grape juice toast”.  I tried to chill out and drink a few margaritas earlier in the evening, but I have truly lost my taste for alcohol.  One drink is just plenty for me and I really don’t want anymore than that.  I just think about how I have to be able to wake up and be alert if Sarah gets up during the night.  It’s tough with her sometimes because if she cries for even five minutes, she starts to choke.  I guess she just gets so stuffy because of how her nose is, that it makes her gag.  So I always try to be on top of things all the time.

I have to make a few calls tomorrow to get her physical therapy going.  I hope it helps her.  I’m not sure what type of exercises they will have us do but I’m really interested to find out.

I am very quickly finding out that many doctor visits=many papers and forms.  So I went out and bought 3 accordian files.  One is solely for Sarah’s medical records.  I have a folder from last year that is so stuffed full of papers for her, I can’t even close it.  So I tried to divide this new file up into different pockets for different specialists and then one for growth charts and one for insurance.  Hopefully this will keep me more organized!  I am really going to make an effort to keep a very orderly house next year.  I guess that will be my New Years Resolution.

I just can’t function in all this chaos and things have been totally crazy since the last March.  I feel like I never really get caught up with the housework and that makes me nuts.  Plus with our homeschooling schedule, I feel like I don’t even have a minute to just stop and take some deep breaths.  Sarah usually does not nap well during the day and that just adds to all the craziness.

So, I have started the process of getting rid of a ton of things that I feel we don’t need.  I’ve already donated 6 bags of kids’ clothes and a big bag of stuffed animals.  I HAVE to get rid of these VHS tapes we have.  I keep holding on to them and we don’t even have a VCR and I rarely watch movies anymore anyway.  I have all my favorites on DVD already so I really don’t need to keep these boxes of tapes.  I also want to get rid of alot of the toys we have.  We don’t need two big plastic dollhouses.  Hannah and Jessica are no longer interested in them and when Sarah is old enough to play dollhouse, I want to buy her a nice wooden one.  I’d like to get rid of as much plastic stuff as I can.

Thanks to my wonderful Dad and Mom, we have found something that is helping with Sarah’s reflux.  My Dad found it online and ordered one for her the day after Christmas.  It came the next day!  It’s called an AR pillow and it’s basically a wedge that has a harness to secure her in it.  She loves it and it seems to have cut down on the amount of formula that runs out of her nose after eating.  Actually, she hasn’t had an episode at all today, now that I think about it.  Hooray for Dad and Mom!!!

Sarah and her AR pillow

Sarah Beth is our youngest daughter.  She was born on April 22, 2006.  We knew things were not quite right when we went for an ultrasound at 29 weeks and she was measuirng quite small.  Thinking it was a mistake on the part of the technician, our doctor sent us to another hospital for another ultrasound.  This guy was awesome, but he found the same measurements.  From that point on we went in for weekly ultrasounds and Sarah was just growing much too slowly.  At the end of 37 weeks, the doctor decided we would be better off inducing labor.  So that is what we did.

The birth itself was not too eventful.  She was soooo tiny though.  She weighed in at 4lbs 14oz(at nearly full term!) when they handed her to me, I was afraid to touch her.  I could see her upper lip and immediately knew something was wrong.  They took her away pretty quickly so I didn’t have too much time with her.  My nurse helped me take a shower and then they wheeled me to my room.

About an hour later, my husband came in looking pretty down and said that Sarah had six fingers on her right hand and was missing the tips of a couple of her other fingers.  She also had a small growth at the base of her spine.  My immediate thought was spina bifida and I just started crying.  Then our doctor came in.  He said that he really doubted the growth was anything more than a skin tag and Sarah would be getting xrays the next morning of her spine and of her fingers.  She had a ton of blood tests as well.

She was having alot of trouble feeding and the nurses were getting worried.  I pumped and fed her with a syringe for the first couple days.  Once she was able to suck a little, they allowed us to take her home.  I was so happy to get out of the hospital.  She had dropped down to 4lbs 3oz by the end of her first week.  We had to take her in to be weighed every week for the first month.  She gained weight so slowly.

We were able to schedule an emergency appointment with a pediatric neurologist for the following week.  He suspected CdLS immediately(though we did not know that at the time) and decided to send us for us for genetic testing and then scheduled a follow up appointment with us.  All of her tests came back normal, which had us totally confused!  In the meantime, Sarah kept having issues with reflux, which our pediatrician thought she would outgrow.  I was getting a little frustrated with him because he kept logging her weight on a “normal” weight chart and she wasn’t even “on the chart”. 

I first found out about Cornelia de Lange Syndrome from a poster on the blog I had created for myself.  I had been writing about Sarah and wondering what the doctors would find.  I put up a picture of her and someone left a comment about perhaps checking into Cornelia de Lange Syndrome.  The second I found the CdLS website, I knew that was what Sarah had.  No doubt in my mind.  I sent for info immediately.  A couple months later the neurologist confirmed the diagnosis of CdLS.  He explained that he had suspected it when he saw her at two weeks, and knew he was right immediately when he saw her at this appointment.  He asked our permission to take photos of her and videotape her cry.  They are to be used for teaching purposes because he said that most doctors have not come across a case of CdLS and this will help inform them.

So fast-forward to today.  Sarah Beth is 8 months old and a smiley giggling little baby.  At her last appointment two weeks ago, she weighed 10lbs. 13 oz!  She will be starting physical therapy very soon.  She has not yet rolled over and has just started to grasp things.  She still has a little trouble with lifting her head when on her tummy.  Hopefully, the PT will be helpful.  We have an appointment at Albany Childrens’ Hospital with a geneticist coming up in April and are in the process of getting an appointment for her with the hospital’s gastroenterologist as well.

So that is Sarah Beth’s story so far.  I feel so blessed to be her Mommy.  She puts a smile on my face every day and I love her more than I could ever put into words.  She’s a very special little girl!