What are you doing to End The Word?

Its not enough for me to just post on my blog about Spread the Word to End the Word. I think most of the people reading my blog already know about the campaign. After seeing these ads Tricia posted at Unringing the Bell, I wanted to make sure everyone I know sees them. I put together this email with help from the Special Olympics website and spammed everyone I know IRL.

Dear Friend,
Help me Spread the Word to End the Word. I invite you to be a fan of respect and join me in a campaign to stop the use of the “R-word.” On 3.31.09 thousands of people across the country will pledge to end the use of the word “retard.”
Visit www.r-word.org and take the pledge and pass this email along to all your friends. Help us get 100,000 pledges and spread the word.
Thanks,
Goldie's Family

PS. the small print in the ads below reads:
Most people who would never knowingly use disparaging terms don't see a problem with saying "retard." This must change. It's just as hateful as any other slur. And for millions of people with Intellectual Disabilities, their families and friends, it hurts just as much. Please, don't use the R-word.

At the bottom I attached the ads. Thanks Deborah for finding out what the fine print said!

ETA: Does anyone know how to get around hotmail's spam blocker? I even tried sending the email individually to people with hotmail and it still bounced back.

Elevated platelets?

Goldie had her routine blood work done back in September and her platelets were 432. I think that should be in thousands. The normal range is listed as 156-369. Her iron was low so we treated it and had another CBC in January. That time her platelets were 421. I was told by the GI doctor that this was slightly elevated, but could be due to her having a recent infection and not to worry about it. (Her blood had been drawn about a month after she had strep and an ear infection) Well, then I went and compared it to her first blood draw and saw that it had been higher in September. I'm pretty sure she hadn't been sick then. I found information on low platelets, but can't seem to find anything on elevated platelet counts. All her other numbers were in the normal range. Any ideas?

Goldie has her 2 year checkup this week and I've got my list of questions for the pediatrician. She also has an appt at the DS center in May, so anything the ped. can't handle I will save for them.

My little corner of Holland

I planted these tulips when I was pregnant with Goldie, they bloomed about a month after she was born. I would go stand by the road just to look at them because it was like a sign that everything was going to be ok.

I mentioned in my last post that Goldie's due date happened to fall on World Down Syndrome Day. Another neat little tidbit is that I read The Memory Keeper's Daughter while I was pregnant with her. If you've read it you'll know that it takes place in Pittsburgh, which is less than an hour away from my house.

I'm still, uh, experiencing, Goldie's birthday. So, I keep thinking back over the years to events that have taken on new meaning. There is one that sticks out, a lot. Many Thanksgivings ago, when I was the mother of one maybe two little girls, the topic of selective reduction came up. (This was around the time of the first septuplets and not exactly appropriate convo with small kids around) One of our family members thought this was a good idea because it would be too hard for a child to go through life with Cerebral Palsy. Then, this person said that if they knew their child would have Down syndrome or anything like that they would terminate the pregnancy. That was when I spoke up and said "I don't think people with Down syndrome are unhappy. I think they live good lives and we are the ones who think they are missing out on something. We are the ones with the problem, not them." That ended the conversation. I will always feel proud that I defended my daughter before she was conceived, but disgusted that I had to. Goldie has changed that family member's thinking, for the most part. But, I find myself unable to forget that if it was up to that person, she may not be here. I've been feeling guilty that I'm unable to forgive this ignorant comment. I admit that I'm not always nice to the person who said it. On some level, I wonder if I blame them for Goldie having DS. Most days though, I like to believe Goldie heard me on that Thanksgiving and said "Her, I want her for my Mama."

March 21st

March 21st is World Down Syndrome Day. It was also Goldie's due date and my grandmother's birthday. But, Goldie wanted her own day so she didn't wait until then.

Here she is, looking officially "2" in her shirt from The Rocking Pony. Doesn't Karen do great work? Now if I could get 6 more I wouldn't have to constantly answer the "how old is she" question.









I thought this would be a good day to show you all what I found in my first grader's science book.







Pretty cool, huh? There were also pictures of other children with special needs besides Down syndrome. It is the 2000 edition of the McGraw Hill first grade science book. I'd like to get my hands on a recent edition and see if they still include children of all abilities in their materials.

Taking care of Me.

This week I actually spent some time doing things for myself. Imagine that.

My favorite thing to do is get my hair cut. Well, I took it a step further and had it colored, too. I'm not ready to deal with the gray. I don't know why. Generally, I'm very low maintenance. I don't wear nail polish. ever. I seldom wear makeup. But, my hair, I love getting my hair done.

I walked twice this week. One day I even made it to the neighbor's to see my future son-in-law. :) He is doing great since his heart surgery and is now off all medication. Can I just tell you how sweet it was to hold him and check out his cute little fingers and toes? His mama is also completely in love with him. The next day I walked with my another neighbor. I admitted to her that I am over this whole DS thing. Not in the good, I'm ok with it way. I'm talking about the I'm sick and tired of therapists and milestones kinda way. Sooo...

Today, Hank and I left the girls with my mom and headed to Amish country. I called the OT in the morning and told her she would be meeting Goldie and her grandma. It felt so liberating. I have been present and participated in every therapy session for 2 years. I think a day off was in order, don't you?

The plan was to go to Volant, PA and get Goldie more of her popcorn that she loves and look for bar stools and bunk beds. I'd been to the town of Volant before, but had never seen the surrounding community (or I would have brought my camera). Seeing the little girl in her purple dress hanging clothes, the boy about 7 years old pumping water from a well and farmer after farmer plowing his fields with horses, not tractors made me long for a simpler life. My kids will be lucky if I don't throw out every piece of plastic along with all the Hannah Montana crap in the trash tonight. Also, I love the way they tie the corn stalks up like little teepees, just like in the Little House books. I felt like such a tourist, even though I wasn't that far from home. We stopped at an Amish farm with a quilt shop and bought a gift for my mom and a bonnet for the girls. The kind woman who owned the shop gave us directions to a furniture maker. His shop is going to make us bar stools for a very reasonable price and we may put money down for bunk beds when we go back. They had catalogs from their suppliers they showed us so we could choose what kind of backs and spindles we wanted on the chairs. So, they order their materials just like any furniture maker would. I guess I had this vision of them hand carving spindles or something.

Goldie is out of luck, I couldn't find her special popcorn. I'll probably order it online, the shipping is less than what we spent on gas today. It was such a peaceful day. Hank pointed out that we haven't spent that much time alone together in years. Sad, I know. Getting away for the day really makes me evaluate what I need to focus on. I don't want to be Amish, but I want the simplicity. I know my life was simpler before DS set up camp in my living room. I want to get that back, without neglecting Goldie's (or anyone else's) needs. IFSP is coming up. I have to decide how much of what she's going to get. Hmmmm.

What do you want for breakfast?

I put Goldie in her chair for breakfast and asked what she wanted. I wasn't sure what I had to give her. We were out of her waffles and bananas. So I look over and she is doing her sign for popcorn and she says "pop". I was so excited! Now here is the part where I feel like crap. We had to leave for Kindermusik and I did not have time to make popcorn. She accepted cereal instead. When it was gone she signed more and said "mo".

The Vision Therapist came today and I filled her in on the new dr. While I was telling her about Goldie signing at breakfast she signed eat and said "eeeah".

This is big because when she started walking she stopped signing and talking. Its nice to see her words coming back. I think her low vision has also affected her ability to learn sign. She can't see movement well, so I don't know what our signs look like to her. We're going to start using picture cards as another communication tool.

Lisa left a comment asking about the treatment for Goldie's nystagmus. It will most likely be surgery. There is a procedure to move the null point and a tenotomy to lessen the jerking. After surgery, she will need more vision therapy to learn to use her new vision.

Nystagmus

Thank you to everyone who read Goldie's long birth story. I'll try not to leave you hanging much longer. But, I just had to post about today!

Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.

I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.

I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.

We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.

We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".

2nd Birthday

Goldie on her new horse. It is just the right size for her!




Dismounting.

Goldie's birth story

The contractions started on the evening of Saturday, March 10th. I went to bed at 11 hoping they would just go away. I didn’t feel ready yet. I woke up at 1:15 am have strong contractions every 10-15 minutes. I woke Hank up and walked around the house. At 2 am they were closer together. We decided to go to the hospital. Swatcho was born very quickly without painful regular contractions. (please don’t hate me she made up for it later) Hank's mom came to stay with the girls.

We get to the hospital and find out I’m only dilated 2cm so we can go home. Yes! But, while we’re hanging out there they decided I needed to watch some videos. One is about shaken baby syndrome the other is about c-sections. We started to watch the first one, then I said “eff this” and shut the TV off. Since when does childbirth come with required viewing material?

I was having a lot of back labor and the contractions were pretty uncomfortable so I didn’t rest much even when we got home. By lunchtime on Sunday they were 15-30 minutes apart. At this point, I was still in denial about being in labor. I thought I had another 2 weeks to go and that the contractions would just dwindle away and I could go on being pregnant. This is strange because at this point in my other pregnancies I wanted to be done. But, this time, mentally I wasn’t ready for her to be born and couldn’t put my finger on the reason why.

Around 2pm my labor picked up again. These contractions were more intense and I needed to find some pain relief. I got in a warm bath and was able to relax. The sweetest part is that Swatcho stayed by my side the entire time. Hank was downstairs “nesting” by hanging new trim in the living room. After getting out of the tub I took a nap in Mini Me's bedroom. Swatcho played next to the bed while I rested.

I think it was around 5 pm when I went downstairs. I may have gotten something to eat. I have this huge fear of going to the hospital and being denied food and then being hungry after the baby is born, but the kitchen is closed. (Oh wait, that happened to me once, when Mini Me was born)

Anyway, I was on my knees with my head on the couch trying to deal with the pain. I ask Hank to come help by rubbing my back. He says “hold on, let me finish nailing this up” Um, NO! That was when we went to the hospital, because he would have to focus on me there.

Now, I’m at 6 cm. I have to admit I was a little disappointed, in 15 hours I dilated 4 cm. My OB gets there an hour later and I’m still 6 cm. She says she’s going to break my water. So, I clamp my legs together and tell her “No, we talked about this. I don’t want my water broken.” She says “Yes, you’re still at 6 blah blah blah I don’t think it will cause you to be in more pain blah blah blah.” Then I cave and say “o.k.”

Well, I immediately was in tremendous pain and started asking for drugs. The wonderful nurse tried to talk me out of it. Then said she would just give me a little bit because she really thought I could make it without anything. Looking back, I know I was in transition, but at the time I thought it was too soon. Now it’s been less than 10 minutes since the OB broke my water and I feel the urge to push. (I just went from 6 cm to 10 cm in like 8 minutes!) Then I can feel Goldie crowning and I tell them I need to push. The OB says “don’t let her push, she can’t be dilated enough,” I yell “it’s too late” Then she lifts up the sheet and says, “oh, yeah, well go ahead then” A couple pushes later Golden Marie joined our lives in a new way.

The first thing they notice is her short umbilical cord. They had to cut it before I could hold her. They laid her on my stomach. She was just screaming and kicking with black hair just like her sisters as babies. But, I noticed right away her skin was saggy. Her knees were baggy like an elephant. I asked them why and no one answered. They weighed her and did her apgar scores. Goldie was 6 lbs 1 oz and 18 inches long; much smaller than my other two. Her apgars were 8 and 10; this made me feel better.

While the OB is delivering the placenta she remarks on how quickly everything went. I remind her that I told her not to break my water.





Afterwards, while I’m holding her again, my right hand keeps going numb and contracting in toward my arm. The blood pressure cuff would tighten and this would happen over and over. I kept telling the nurse and all they did was stare at my arm. So, finally I throw the blood pressure cuff on the floor and tell them they will have to take my bp the old fashioned way. The nurse isn’t making eye contact with me anymore and she’s biting her lip. I figure I must have pissed her off.



I try nursing Goldie for the first time, but she doesn’t seem interested. Hank takes a picture of me trying to feed her anyway. I figure, no big deal, Swatcho wouldn’t nurse right after she was born either.

They take Goldie to the nursery for footprints and I make Hank follow them. The nurse helps me get a shower, but she’s very quiet now. My OB is gone.

Goldie comes back with her Daddy and gets to meet her sisters, grandparents, aunts and uncles.



As I type this I realize I still have a lot of emotions surrounding Goldie's birth. Mother's intuition is strong and I could tell something was not right after she was born. It kept me from relaxing and enjoying the moment. I just realized I have no pictures of us as a family from that night or of Hank with his newest daughter. I want to look back on it as a joyous time, but I still feel all the uncertainty. Maybe I should stop now and post the heavy stuff another time.

One got glasses and one had a birthday!

Swatcho got glasses last week.








This baby turned 10!



She wanted to celebrate by going to see the horse exhibit at the museum and having stuffed grape leaves for dinner.





We rolled out 70 of those sought after, sour creations. Well, the Birthday girl didn't start rolling until the end was in sight and there's no pic of the finished meal because we ate them. Quickly. Goldie has eaten them before, but wasn't in the mood this time.

Goldie has a Birthday and an eye Dr. appt this week. This is with a new doc and I'm hoping he can answer some questions we've had about Goldie's vision and nystagmus.


This is her after the museum. Yes, she is still rear facing. Her sisters are way more entertaining than the back of my head. Plus, I'm clinging to every last morsel of her babyhood.

Carbon Monoxide Poisoning

Goldie went to bed early and then had me up at some very interesting hours last night. One of which took me a while to fall back to sleep. Seemed like a good opportunity to think about what to post on my blog. Out of nowhere I thought about the time the girls and I had carbon monoxide poisoning. It has been 6 years this winter.

We had a new gas furnace put in while I was pregnant with Swatcho because the oil one we had was very unreliable. Everything went well that year, but the next year we started having problems. Our house is heated with hot water, no ductwork, with the furnace in the basement. I would open the basement door to find it smoky and the furnace would have to try several times before finally lighting. Since my grandfather had installed the furnace I called the repair company he recommended. They were clueless, I would find them sitting in the basement staring at the owner’s manual. During this time our CO detector had gone off on a couple different occasions. I called the gas company more than once who came out and told me they couldn’t find anything and “those aren’t very reliable”. So, we call a new furnace repair company. They send a tech out, he makes some adjustments and things get better.

Then I wake up one morning, to my alarm clock, for MOPs. I had been tired and had another headache, but decided we should go anyway. I wake Mini Me up and get her to the bathroom. While I’m getting her toothbrush, she passes out. I put her on her bed and open the window next to her. The fresh air wakes her up so I put the girls in her room with the open window while I call the pediatrician. I ask her if it could be CO poisoning? Swatcho is only a year old and she is running around like nothing is wrong. Wouldn’t she be more affected? She tells me to get them to the ER right away. (In hindsight I should have called 911)

So, I shut the furnace off and drive us to the ER. My mom meets us there. They take us back right away, draw blood, and give us oxygen. The blood work comes back. We have carbon monoxide poisoning. Mom calls Hank who meets the fire department at our house. He didn’t get sick because he leaves the house to go to work. I had been in the house for 3 days straight. If we had ductwork we would have been dead. Really.

I wish the story ended here, but the fire department didn’t find anything wrong. So, I buy the most expensive CO detector I can find with a digital display. Sure, enough a couple weeks later it goes off. I leave the furnace on and the windows shut. Then, put the kids in the van and we sit in the driveway until the gas company comes. He finds it right away, coming back down the chimney. It was only happening when the weather conditions caused enough moisture to make the air heavy. The solution was getting a chimney liner. The chimney should be smaller for our gas furnace than the oil one we had.

Back to last night, I didn’t really want to type out this whole story. I don’t have time today. At 7:00 AM I woke up to 3 shrill beeps every couple of seconds. Whoa, that would be the carbon monoxide detector. Ok God, I’m listening, I’ll tell them. Someone must need to read this.


The basement door was open and the furnace and the dryer were running. We shut them off, aired out the house, and Hank will clean the furnace after work. This CO detector is new; apparently they expire in 5 years. I read this on the packaging of the new one I had to get the day the old one quit working. I love the digital display because I can see how bad it is. Like, this morning, it was no were near the levels of the time we got sick.

I always forget to write down the cute, witty things my kids say because I think I'll remember them. Then...well, you probably know how it goes. So, I thought I'd blog some things Goldie did this week before I forget.

As I've mentioned her fave food lately is popcorn. For a couple weeks the only time she would sign "more" was for popcorn. My mom sent a fresh supply of popcorn over and Goldie heard me announce this and got all excited. I told her when I was done cleaning up I would make some. A couple minutes goes by when she starts signing "more" and pointing at an empty cool whip container on the counter. I wasn't sure what she wanted so I picked her up and she starts lunging at the container. Hmmm.

That's when I remembered that 3 weeks ago my mom made some flavored popcorn and brought it over in that same container! So, her memory is better than mine?

Friday Goldie had her speech eval. The ST had some cards with drawings of people doing things on them. She asked if I thought Goldie could point to the correct picture if we named the action. I was curious so I said ask her and we'll see.

ST: Goldie, point to the picture of someone sleeping
Goldie: Kisses drawing of sleeping baby

ST: Can you point to the person eating? Where is the person eating?
Goldie: Licks the drawing of the girl eating ice cream

ST: Point to the person building with blocks
Goldie: Kicks the book

She cracks me up! We've been teaching her to kick towers of blocks, but I think she was just ready to be done with the eval.