I love Shriners!

Well we had our appt at Shriners's...

What an amazing place. The hospital was immaculate and beautiful inside and every single person that we dealt with was kind, supportive, and super friendly. My big girls' jaws dropped when they saw the waiting room at Outpatient Services. It was like a huge Funland. LOL. They both got a bunch of books, stickers, and crayons.

We were there for about four hours, saw three different drs(including a hand specilaist), and had xrays taken. As far as her extra digit, the specialist strongly advised against removing it. He said Sarah's circumstance is a little different from most of the ones he sees. Her fifth and sixth finger share a knuckle. We would have to remove the fifth finger, since even though it grasps with her other fingers, it only does so because she actually has a web between the fingeres and it pretty much just gets moved along with the rest. If we did remove it however, he said he would have to shave the bone and move her pinky finger over because otherwise there would be a very large space between the fingers. Doing that would more than likely cause her to lose function in that finger. It would wind up being a "stiff little finger" that basically just sits there. He didn't think it was a good option because her fingers function fine the way they are.

I am at peace with that. This time it was presented to us in a positive way, we looked at the xrays with him as he explained it, and had all the time in the world to ask him questions. So, we're not going to seek any more opinions. He told us that he is sure we could find a surgeon who would do it but he believes very strongly in what he is telling us and that it's not worth risking.Her arms are pretty much the same story. Not much can be done. The bones in her forearms are basically "too long" and prohibit her from straightening her arms. In the xrays, it looks like they grew right past where her elbow is and it pretty much lock her arms at a certain point. We are however going to follow up on this next year along with her leg length discrepency.

So, even though I didn't want to hear that nothing can or should be done, I feel OK about it now. I loved Shriners. We were there all morning and one of the nurses came in and gave us a card so we could all get free lunch in the cafeteria. They were truly awesome and I am so glad we went.

Other VERY exciting news...we got the scholarship from the CdLS Foundation and will definitely be attending the conference this summer. I am way excited! I just sent out a check for the balance (to attend the banquet) and we will be all set. Sarah's social worker said she can help us raise the money for the hotel room so that will be taken care of. We'll be driving, so gas money is the last thing to save up. It should be fine though. I can't wait to meet everyone. I'm sooooo thrilled!!!

All in all, I had a pretty darn good week. Oh and Meeshi...if you are reading this...I've been writing to some companies and got tons of coupons(Amy's, Brown Cow, White Wave, etc) so thanks for posting that tip at Amitys!! *SMOOCH*

A Day in Hell (aka...a trip to the Eye Clinic)

So we took Sarah to Westchester Medical center last Friday to see yet another opthamologist. Holy crap...it was THE single worst experience I have ever has as far as doctor visits go. It was an eye clinic. The waiting room was hot as hell, stuffy, and so crowded that only two of us could sit. We waited an entire hour before we were called back. We saw the assistant for about 10 minutes. Sarah screamed and cried and then threw up. We were sent back out to wait for the doctor. In the meantime, there was a lovely little parade of men in orange jumpsuits wearing handcuffs being brought in by corrections' officers. Apparently it was their day to visit the eye clinic too. It was also the day for a whole bunch of severely mentally ill patients to visit as well. I have nothing but empathy for these people, honestly, but one guy let out a blood curdling scream every five minutes and scared the shit out of my kids. We were the only people there with kids by the way. The opth. wasn't even a pediatric one.

So we wait another hour and get called back to see the doc. He was a total asshole and very condescending. I guess he maybe met ONE kid with CdLS in his lifetime, yet questioned me about everything I said as far as Sarah's eye problems...like it was a rarity to see styes, blocked tear ducts, and ptosis in a child with CdLS. So anyway, he puts the drops in to dilate her eyes and we find ourselves back in the waiting room (told it would be about 15 minutes before they called us back again). So we wait almost an entire hour. Here come more prisoners. There goes everyone else who came in waaaay after us. We didn't even see a receptionist at the window anymore.

So, we just got up and walked out. Screw that. He said that he doesn't do ptosis surgery until a child is at least 4 years old unless it is severly affecting their vision. Sarah can still see, she just has to lift her head back to look up. Once again the only advice we were given was warm compresses and clean the lashes with baby shampoo. I've been doing that since July. Sooo frustrating.

Anyway, I'm done with it. We'll take her back to Albany next year for a checkup and see if they want to talk about surgery. I have no reason to see any specialists at Westchester anymore. I have no idea why AMC referred us there in the first place. I guess to keep all her specialists in one place. But now that we are going to Shriners' in MA next week for the orthopaedic issues, we aren't seeing anyone there anyway. Ugh. What a wasted day.

Cooking up a storm

Today is rainy and gray so I decided to start doing some cooking and baking. So far I have Spicy Pinto Beans simmering away in the crockpot. Later I'm making homemade tortillas and Sopa de Fideo. That'll be dinner. I made biscuits this morning and Apple Cinnamon Muffins. Right now I have some veggies steaming on the stove for Sarah's lunches next week. Once they are finished. I'll add some seasoning and puree them. Then they get portioned out and go in the freezer. I have to run to the store after her nap is over to grab a few things so we can bake chocolate chip cookies and choclate chip-pumpkin muffins tonight. Hugh has band practice(that's a rant for another day) so the gals and I are going to have a Harry Potter movie marathon and make popcorn. It should be fun.

Apparently all this heavy rain has washed out the dirt road that leads to our property where we are building our house. One of the neighbors called Hugh this morning and told him. No one can get down the road. There are I believe about 12 other properties/houses on this road too. So he left to go help them put more dirt down and try to rebuild it. We just excavated some of our land to build a stoarge shed and the first house, so we have a ton of dirt they can use. I hope this doesn't happen every time we get heavy rains. What a pain! Oh and he met our neighbors in the back(their property is actually far off across the woods but still within walking distance). The guy owns a tattoo/piercing parlor. He does body piercing and his wife is a tattoo artist. They are vegetarians and apparently have decided to build a castle on their property. Sounds like we picked the right place to live!!

Ugh...I should stop reading these reports from Sarah's therapists

All of Sarah's therapists are giving me copies of her annual review reports this week. After a little period of greiving when we found out Sarah's diagnosis at 3 months, I made the decision to always focus on the positive and appreciate the things that she can do and not dwell on the things she can't. Even when I post something, it is usually to celebrate something she has done. I am thrilled with her progress so far and she seems to be right on track with the development charts created for children with Cornelia de Lange Syndrome. I understand that sometimes the reports have to focus alot on the negative so we can keep getting the services we have but wow...sometimes they really sting. Her SLP put her skills at just below 10 months. I was a little surprised by that. I haven't received the report from her PT yet but now all the negative thoughts are creeping in. She is almost two and doesn't crawl at all. We've actually given up on crawling because we were just getting nowhere with it. It is making me feel really sad.I hate feeling like this but I just can't seem to shake it now. It's like all the wonderful things she has been doing are canceled out by the fact that her delays are greater now than they were when we started. She was at a 33% delay and now it is 50% for speech. It feels like a slap in the face when I thought things were so good with her.

Sarah finally got a gait trainer. She absolutely hates it. LOL. I was hoping she would enjoy being able to move around on her own but she's not happy about it at all. Her PT is going on vacation in two weeks and we will be on our own for about a month. And now I just found out that if her report for Sarah's annual review is not in before she leaves, we cannot have PT put on Sarah's IFSP. What a load of crap! There's alot more going on that involves bad blood between my serivce coordinator and the PT and I think it stinks that Sarah has to suffer because of it. People have really been getting under my skin lately.

In other news, I'm tired of internet drama and nasty, catty bitches that have nothing better to do with their time and life than dig up what they consider "dirt" on other people and use it to try to damage them. Makes me sick and I'm surprised that certain women I thought were so cool actually turned out to be so damn ugly. I hope no one holds my past mistakes against me. It really had my blood boiling yesterday and I actually decided to step away from the forum it went down on. And it sucks because I really loved that place but I have a bad taste in my mouth. I even went back and edited some of the threads I started in the "private" forum there. I realized that I don't want certain people to know my business. If I ever do decide to post there again, I'll never post a single personal thing, that is for sure. Yuck. I now remember why I have very few close female friends in real life.

And on a happier note, I lost 10lbs so far! Woohoo! Hopefully next month, when the temps rise a little bit, I can plan some easy hikes for the girls and I. Hugh is losing weight too. I've been packing his lunch and he's cut down on the sweets. Now I have to figure out a way to get him to drink more water.

CdLS Blog Challenge: Sarah 101

1. Sarah was born on April 22, 2006.

2. She has six fingers on her right hand.

3. She loves music and to listen to her Daddy play guitar.

4. She is crazy for choclate chip cookies in her mesh bag.

5. At her last weigh in she was up to 15lbs. 2oz.

6. Sarah cannot fully straighten either one of her arms due to deformities of the bones, but that has not stopped her from being able to push herself up into sitting position.

7. She laughs hysterically when you squeeze her feet.

8. Sarah will absolutely not wear pajamas with feet in them.

9. She hates baths but loves to go in the shower.

10. Sarah is the first child with CdLS that any of her therapists have ever worked with and they all love her.

11. Her favorite toy is a little piano.

12. She adores her sister Jessica and smiles every time she sees her.