Crazy in the Catskills

Reconnecting

2008-04-07T12:41:00.000-07:00

I was really starting to get concerned about my marriage. I felt like we totally lost touch with each other and the relationship was just so stressful. Things have completely turned around these past couple weeks. Hugh's not been drinking at all and that has allowed me to let my guard down and not be edgy and defensive all the time. I also decided to start putting Sarah in her crib at night and it was the best decision that I could have made. The past few nights have been great. I feel like we're getting to know each other all over again. I realized that I was just all touched out by the end of the day from not being able to put her down and having her sleep in the bed never allowed me to get time away from her. And that is somethng that I desperately need.

Also, we are finally getting a handle on all of his health problems. He's seen an ENT, has a sleep study scheduled at the hospital, and is on blood pressure and reflux meds now. He's been watching what he eats and I can already see that he's lost a bunch of weight. I've been dieting right along with him and have never felt better. Maybe it's the change in the weather. I don't know but I feel so much better. No more headaches or fatigue. It's such a relief that things are finally looking up for a change.

I love Shriners!

2008-03-29T07:00:00.000-07:00

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)

2008-03-18T10:03:00.000-07:00

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

2008-03-08T08:26:00.000-08:00

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

2008-03-06T18:50:00.000-08:00

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.

2008-03-05T08:54:00.000-08:00

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

2008-03-01T19:26:00.000-08:00

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.

I need a system

2008-02-23T18:35:00.000-08:00

Sarah is absolutely thriving on solid foods. I'm giving her water and vanilla soymilk to drink. Occasionally she has a few sips of organic juice. I'm making all of her food from scratch. I bought a food mill and a ton of storage containers. Now I just need to set up a system where I can make her lunches for the week and freeze them. I bought beautiful organic fruits and veggies for her. Dinners I can handle just making her serving on the spot but for lunch I don't want to have to cook and puree every day. The girls and I always have a quick simple lunch because we are usually really busy all week. So, I'd like to just be able to grab Sarah something out of the freezer and warm it up. So I'm thinking Sunday afternoons might be a good time. I can get Hannah and Jess to help too.

I'm keeping a food diary for her as well. Her nutritionist is coming in a few days to weigh her and I want to sit with her and go over her new diet and make sure she's getting proper nutrition. I may wind up having to buy her some type of drink similar to the Pediasure, just to keep those calories. I've been adding butter and cream everywhere I can for the time being. She seems to be tolerating the dairy alot better too. I haven't given her milk to drink though just because of how horrible it was every other time I tried. She is doing fine with small amounts of yogurt though.

She's being tested by all her therapists this coming week because we have her one year review in March. They need to get their reports in and then we can set up a time for everyone to meet here. I'm pretty ticked off at her initail service coordinator though. We had a day where Sarah had four therapies scheduled in one day. I had them spread out so that she could have her nap time and not be overwhelmed. We had to do it this way because the poor kid had therapy every day and I desperately needed a day off in the middle of the week. Hannah and Jess have homeschool activities and I have tons of paperwork to keep up with for our contracting business. So apparently, you aren't supposed to have that many therapies in one day BUT there is a special waiver I can sign and have them approve that can override that rule. Every one else was fine with it and I wanted to go ahead and keep the schedule and sign it. Well, her initial coordinator(who I met twice nearly a whole year ago) decided that it wasn't going to work out and that Sarah doesn't have "enough therapies going on" to warrant having four in one day. Um......I have nine different people in and out of my house nearly every week. She has more than one therapy every day, except Wednesday. I homeschool two other children and they have a life too. Plus I have things to do that don't involve Early Intervention. Therapy is NOT my entire life and I resent her deciding how my schedule should be. I plan to say something directly to her at the meeting. That pissed me off.

Bye-bye Pediasure

2008-02-21T06:26:00.000-08:00

I have no idea why but Sarah is refusing her Pediasure. It's been over a week now since she's had more than an ounce or so. The one morning I decided to kind of force the issue and kept giving her bottle back. Well, she drank about 4 oz and then puked it all up fifteen minutes later. So now, I'm changing her whole diet around. I'm not sure what else to give her. She's been taking a few ounces of soymilk each day & then mostly water with a few sips of organic apple juice occasionally.

Our other issue is the baby food. She has been refusing that as well. I've been making all her food from scratch and blending it so that it is smooth but has a few soft chunks. It's almost like she has now decided that she's not a baby anymore. So I have a meeting with her nutritionist next week to discuss all of these new developments and plan some menus for her so that I'm sure she's getting proper nutrition and enough fluids.

Other than that, all seems to be well. Everyone has fully recovered from last week's stomach bug. I hope Sarah never gets sick again. That was really hard. All of these new changes with her seem to have been set off by her being sick.

I have a ton of running around to do today so I had better get moving. After the big girls finish their school, we are going to start planning our garden for this spring. I am so excited to have so much space to work with. We may stop by the property later if it's not too cold to look around some more. Now, we have a squatter living there. LOL. It's actually one of Hugh's employees and he's camping out in his RV. I like having someone there to keep an eye on things though, so it's cool.

Time for an update

2008-02-16T12:25:00.000-08:00

Well, after a week of everyone being sick, we are all better except Sarah. I'm giving it one more day and if she's still not back to her cute little self, I'm taking her in to the doc again. She's so listless and not eating enough. Plus she is sleeping all day still. Poor little thing.

This week we have all of her therapies back on track. I have a meeting with someone from DDSO about more respite and the diaper service. If I could get a couple hours of respite every day I would dance naked in the streets of Kingston. I swear. My house would be immaculate and I'd actually get to wash my hair more than once every 10-12 days. Woohoo!

I need to reschedule her opthamology appt at Westchester yet again because they cancelled it for the second time. I have two big appts next month and I really hope we can get her in before the end of February. I'm so excited about taking her to Shriners. I hope they can help her. That would be amazing.

I also am very excited about the CdLS Conference this summer. I have my application all ready to go. I cannot wait. It is going to be a great experience.

Other than that, the property is looking better and better all the time. Most of the trees are cleared out and Hugh is getting ready to start building. Once we get some warm weather, the girls and I are going to go over a few times a week and work on some gardens. I think I'll do raised beds. We have so much space. It's going to be cool to finally have a big organic garden. We are considering buying the property right next to ours as well. Then we'll have almost six acres. There is already a rental on that property which we'll keep there and fix up (it needs work...I feel bad for the family that is in it right now and would definitely want to spruce the place up for them). I can't wait for the winter to end. So many things to do.

Time to take a break

2008-01-24T09:59:00.000-08:00

I am feeling so overwhelmed right now. I have to get organized and get Sarah's medical needs taken care of. I'll try to update in a couple weeks. I recently decided to switch our Early Intervention "Ongoing Service Coordinator" to some one who is a friend of mine. Our original "Ongoing" is really nice but has been dropping the ball alot lately and not communicating. We have every service there is for Sarah and I need to know what is going on, not be left in the dark for over a month at a time. So switching to the new OSC apparently has struck a wrong chord with our PT. She must have had issues with her in the past and now there is drama. I feel like I'm in the middle and I want no part of it. I just want Sarah's services to continue as they are. I don't have the emotional strength to deal with this crap right now. Sarah is due for her yearly meeting and needs to be tested again in all areas. I've not been feeling well for months and still haven't had a chance to see my doctor.

Sarah needs to see the gastro, the opthamologist, and the neurologist. She needs to get in for a hearing test. And I'm still waiting to hear back from Shriners. I just need to get my head together. I don't need added stress. Hopefully next time I log on to the computer, I'll be feeling better. I just need to prioritize and get things straightened out.

WWTV Day #10

2008-01-23T09:24:00.001-08:00

We're getting closer to having it all cleared! Hugh's been working at the property with a small crew of guys this week and they've been clearing trees where the houses and studio will go. We just had a discussion about buying the property right next to ours(the same guy owns it that sold us our land). I think it would be an excellent opportunity for some rental income. There's a small house on it already and we could eventually build another. That lot is 3 acres as well. The best part is that the owner wants to work out a barter with Hugh. He wants to build another house for himself and his wife and it's a good possibilty we could trade labor for part of the cost of the land. That is one thing I love about this area is that the barter system is still alive and well. LOL. We never have much money but always manage to get by on Hugh's talent for buildng and for making really good trades!

WWTV Day #9

2008-01-23T09:15:00.000-08:00

Today I'm dreaming of Spring. LOL. I just bought a new pair of hiking boots and found some bedding at the thrift for our rv. I cannot wait to go camping and hiking. I was looking through old pics to find one of Sam's Point. This was my favorite hike. It was so beautiful. The kids absolutely loved it. We went from the high peaks to a lake and then to a cave. It was so cool. This pic is of Hugh and Jess waving from the lookout. *Sigh* It's 18* out there today. Waaaahhh!!! I want the warm sunshine and the green leaves back again.

WWTV Day #8

2008-01-21T10:28:00.001-08:00

Today is offically "Stay in Your Jammies" Day. Need I say more?

WWTV Day #7

2008-01-21T08:15:00.000-08:00

Spent some time today scanning old pics that Hugh and I have taken. We both love this one. It's from a few years ago. He was driving around in the boonies trying to find a house where he was supposed to do an estimate. He wound up getting hopelessly lost and drove by this truck. "The Guitar-Pickin' Congressman"...love it!

WWTV Day 6

2008-01-19T11:29:00.000-08:00

This is another one of Hugh's "findings". It is now hanging in our bathroom right over the tub. Is it a musical instrument? A piece of art? It has strings but doesn't make very pretty noises..LOL. If you know what it is..please enlighten me!

WWTV Day #5

2008-01-18T09:55:00.000-08:00

I cannot wait until we move back to the boonies. I love our apartment but hate looking out the window and seeing a gas station at the bottom of the hill. We have a beautiful view of the mountains as well but still...the gas station definitely puts a damper on it. I had to drive through Palenville to take Hugh his lunch today and everything looked so beautiful as we drove up through the mountains. I pulled over to snap this pic of the ice hanging off the side of the cliff.

WWTV Day #4

2008-01-18T05:50:00.000-08:00

Every evening before dinner, we have "play with Sarah" time. She loves to play with the big girls. I usually put her Listening Therapy cd on during this time as well. I love watching the three of them together.

WWTV Day #3

2008-01-16T14:10:00.000-08:00

Wednesday is our "free day". Sarah has no therapy and we always do something fun. I decided that we needed this little break in the middle of the week. I even put the house phone on "Do Not Disturb" so we don't get interupted all day. We cook a nice big dinner and the girls help prepare it. Hannah is cutting celery for our stuffing that we will have with some seitan cutlets and mushroom gravy. Then tomorrow it is back to being frazzled and hurried.

WWTV Day 2

2008-01-15T06:55:00.000-08:00

Sarah is getting ready for her day. She likes to help with her socks. We have a long day of therapy ahead of us. I caught this photo as the sun was coming up and peeking through the window.

Winter Walk to Valentine Day 1

2008-01-14T12:02:00.001-08:00

I know that it doesn't look like much but this is the beginnings of the road that will lead to our new house. When we first went to look at the property, I was having a hard time envisioning what could be. It just looked like woods to me. Hugh started clearing trees and all of the sudden, I can see "it". I can see exactly where the house will be, the studio, my gardens, the swingsets...everything. I'm so excited about having our own place that we built together.

2008-01-10T18:23:00.001-08:00

I've decided that I need to get Sarah a new Ongoing Service Coordinator. I really like the one she has but things are just not getting done anymore. I signed papers for an increase in respite hours and for a vision eval. back in October. It took almost two months to get the vision eval. It should have taken two weeks. Once we had one the first week of December, the therapist told me straight out that Sarah qualifies for services because she has Cortical Visual Impairment. We decided on a day for therapy sessions and she tells me that it will take about 10 days for it to actually start up because she has to send a report to our OSC. No problem.

Well, here we are at the end of the second week in January, I still have no vision services in place and no increase in respite. I'm frustrated and stressed out. She never even calls me anymore to give me updates or let me know how things are going.

I met another OSC in our homeschooling group. She's great. I love her personality and I'll be seeing her just about every week anyway for homeschool related things. So I'm switching. I've been feeling so bad about it. I've actually lost sleep over it because I hate hurting people's feelings. I don't know if the switch was made yet but I hope it happens soon because I just want to get it over with.

Getting back into the swing of things

2008-01-06T12:19:00.000-08:00

Now that the holidays are over, I'm trying to get us back on a schedule. I think I have all of Sarah's therapies worked out so that we can consolidate as much as possible without overwhelming her. The only one we haven't started yet is vision therapy. It should start in another week or so.

I asked Sarah's PT and OT(who are both amazing, by the way) if they would mind if I videotaped some of the sessions. Here are a couple clips. The first is from PT. Sarah is now keeping feet on the floor and allowing her PT to assist her with standing. She is able to move her feet in a walking motion while being supported. The second is during OT. We have been doing deep compressions on her fingers, arms, feet, and legs. The hope is that it will help her with some of her sensory issues and help her to remain more organized and calm. In just a few weeks, she went from totally freaking out when her hands were touched, to what you see in the video!

First one: http://www.youtube.com/watch?v=RkJLkiXBrL4

Second one: http://www.youtube.com/watch?v=j9RT1QhUciY&feature=related

And lastly, the picture at the top is of her doing her new favorite activity. She sits on the bike while I push her around the house. The hardwood floors are killing my knees but she loves it so much.

Whew...the holidays are almost over

2007-12-26T13:09:00.001-08:00

I've been so hectic this past month. Hopefully after New Years', I'll have some more down time to blog. I'm still working on Sarah's website and want to include a link to this blog as part of it. Then I can post some pictures and video of her therapies. She's really been stimming the last couple days. I think all the excitement is just totally overloading her senses. We have a very quiet New Years' Eve planned...just the five of us, some Indian food, and a little sparkling cider. I have a ton of "to-dos" that I need to take care of next week. I'm giving myself a break this week from phone calls, homeschooling, and schedules.

2007-11-28T17:38:00.000-08:00

Wow...today was just one of those days. I was in such a foul mood and for really no reason. I just wanted to be left alone. I just felt like I barely had the energy to even hold a conversation with anyone. Of course, that is not possible because Sarah had SI, nutrition counseling, and her EI social worker come over. So I had to put on a smile and be all chipper. What I really wanted to do was crawl back into bed and just sleep the day away. Hopefully I'll be back to my old self tomorrow. Every so often I just get in a mood like this and I can't shake it all day. Tomorrow I am also starting a new diet. I really need to take better care of myself.

2007-11-27T14:25:00.001-08:00

We had speech therapy this morning and Sarah was really into the little instruments that Amy brought over. She was using these two little blocks that you rub together, then she would look at us like she was waiting for someone to clap. It was great! She really likes when you clap for her and say "Yay Sarah!!". She'll wait a few seconds and then try to clap by herself. She really tolerated the music play for quite a while. Once she started to hit herself in the head with the toys though, we called it a day. I can't wait to start OT because I'm very anxious to hear any tips she may have for me to help Sarah with her self injurous behaviors. That is one thing I am quite worried about. She's slowed down on the actual headbanging but has started to actually hit herself on the side of the head with her hand or a toy.

All About My Sarah and Cornelia de Lange Syndrome

2007-11-25T11:33:00.001-08:00

So, I've decided to start a blog about my daughter Sarah and our day to day life. Sarah has Cornelia de Lange Syndrome. I have a website where you can read all about her and find some links to sites that offer information about this syndrome....www.sarahbeanscdls.com. We are still working on the site so hopefully there will be more information on there soon, along with pictures and eventually videos.

Sarah has alot of appointments each week with therapists and doctors. I thought I'd use this space to "let it all out". It does get very stressful sometimes. The fact that I homeschool my older two girls doesn't make things any easier. It's usually very busy around here all the time. Hopefully, I will be able to find some time in the evenings to keep this blog updated.