Tuesday, April 28, 2009

Saturday was awesome!!!

Whew! This weekend wiped me out. Mentally and physically.

Friday night I got together with my friend, Sarah, to go over our presentation. Sarah is amazing, she wrote most of our presentation and really contributed so much with her experiences. She was very impressed by the pictures some of you sent! These images were an integral part of the presentation. I wanted everyone to leave with a picture of a baby with DS actually breastfeeding. Too many people don't think our babies will really be able to nurse. I think this can be a self fulfilling prophecy and I wanted to change the picture they may have had in their minds.

Saturday morning we spoke from 9 until noon on the impact of a Down syndrome diagnosis on breast feeding at the LLL of Western PA Area Conference. We explored both the emotional and the physical difficulties that can be encountered. It was an amazing morning. The women we spoke to had a lot of questions. I'm glad we were able to provide them with accurate information. There was even a genetic counselor in the audience! She fielded some of the technical prenatal diagnosis questions for us. I even asked her a question or two myself. There was a great discussion on the 90-92% termination rate of babies with a prenatal diagnosis of DS. That shocked everyone. During this part of the presentation were pictures of Sarah's daughter. I wanted to get past the image of a fetus and show the child with Down syndrome. I'm hoping it was subtle, yet effective.

We provided information about the various health issues that can be present, if they would affect breast feeding, and how breast feeding can help. We explained that a pumping mom is a breast feeding mom and really needs to be supported. My co-speaker brought up a great point about kids with immune system challenges and how to make meetings a friendly environment for them. One way is to have sick policies so they won't be exposed to a virus that could render their child ill for weeks.

I learned something. One of the women was a postpartum nurse at a well known women's hospital. She explained that babies with DS born at that hospital are sent to a separate floor. (Huh?) They don't want the mothers to see the typical babies and be sad. (What?) I found her later in the day and asked her if I had this right. Yes, they are not sent to the nursery on the postpartum floor. But, I'm still confused. I thought they had rooming in. I take Goldie to the DS clinic next month, maybe they can explain it better.

We ended up with almost double the people we had anticipated. Good thing I made two packets for each person. The packets included brochures for local and national resources and support agencies, general Down syndrome information and health care guidelines, information about heart conditions, breast feeding articles, people first language,the beautiful DSANV calendars and where to find even more information. DSRTF sent me a huge box of newsletters and DSAV sent some brochures. I'm still waiting to hear from the groups in western PA that I contacted.

The rest of the day was spent chasing Goldie around a hot stuffy hotel. Our weather has been a lot warmer than normal so the indoor poolside lunch was like eating in a sauna. While I drank a lot of water, Goldie was too busy to be bothered by drinking or nursing. I think she was dehydrated the next day, probably from sweating. Go me. Only I can bring a nursing toddler home from a breast feeding conference dehydrated. She's back to her signing dancing self now!

Oh, I almost forgot, well actually I did. The gift basket I put together daaaays ahead of time. I left it sitting in our enclosed porch where the kids Goldie wouldn't get it. sigh. If I had put it together at the last minute I would have remembered it. That's what I get for trying to stay on top of things!

Wednesday, April 22, 2009

I'm speaking on Breastfeeding & Down syndrome, wanna help?

I've been consumed with a presentation I'm doing with my friend, Sarah, this weekend on Breastfeeding and Down Syndrome. We are in our final stages of preparation and I'd like to add some pictures to a Power Point presentation that she did. So, if you have any pictures of your child with DS breastfeeding that I could use, I would be soooo grateful. I can't guarantee that I'll have them added in time, but we are hoping to present this session again in other locations. Life with 3 kids has a way of going off track at the most inopportune times.

Thus far, I have a gift basket for children of all abilities put together for the silent auction and will be assembling folders of information, local and national resources to hand out to attendees. A BIG THANKS to Rebecca at The Bates Motel for hooking me up with some awesome 2009 DSANV calendars. I'm hoping this is a great way to reach people who are working with new moms and babies. I see a chance to advocate for them in their earliest days!

If I have time, I'll add a picture of the basket and folders tonight. I keep finding more articles to add and have ANOTHER trip to Staples planned for copies.

Friday, April 17, 2009

Crock Pot Breakfasts

Some of you left comments on that last post asking about Cream of Wheat in the crock pot. Since Goldie came along, bringing a calendar full of appointments with her, I've had to find easier ways to keep everyone fed. The problem was, my kids were spoiled by hot breakfasts of pancakes or eggs and quickly became bored with cold cereal. Anytime I know we have a busy morning I try to put breakfast in a slow cooker the night before. Here are the two basic recipes I use.

Cream of Wheat
1 cup CoW
5 1/4 cups water


2/3 cup CoW
3 3/4 cups water

The first recipe makes a lot and we have enough left over for the next day. The second batch will feed 2 schoolagers, 1 toddler, and one breastfeeding mama. Put ingredients in before bed on low it will be done when you get up. We sweeten ours with 100% maple syrup, but you can use what you like. Sometimes I add a little soy milk, too.

Blueberry - thaw 1/2 cup or so frozen blueberries in fridge overnight. Add in the morning.

Chocolate - just use Coco Wheats

Crock Pot Oatmeal
2 cups oats (old fashioned or quick)
6 cups water

Add above ingredients at night on low, it will be done in the morning. After experimenting, I do not add any spices until the next morning. I add fresh apples the night before, but canned or frozen fruit in the morning. Peaches, blueberries, walnuts, cinnamon, and maple syrup are regular add-ins around here. I think this recipe made a lot and we had enough to put a bowl in the fridge.

Wednesday, April 15, 2009

The Real Me

Tricia at Unringing the Bell tagged all her readers for this, and since Goldie and I are big Georgia fans we obliged. So if you've ever wonder what it would look like if you could see me while I'm reading your blog? Here it is:

This is our bedtime routine. I can take lazy to a whole new level. Seriously, I'm having a pretty good night. The kids are in bed (maybe not their own, but A bed), laundry turning in the dryer and washer, Cream of Wheat in the crockpot for breakfast, dishwasher is running, chicken eggs collected and the animals are fed. I wish everyday could go so smoothly.

Tuesday, April 14, 2009


After we dropped the playgroup, we signed up for a Kindermusik Family Time class. Classes are once a week and I bring Goldie and Swatcho. Swatcho is the oldest child in class and Goldie is on the younger end. The first week we went it was raining and the parking was (is) terrible. By the time we got in the building I thought it would be our first and last class. But I was soooo wrong.

The teacher is very caring and knowledgeable. She taught my older girls when Goldie was born and the year after, so she knows all about the DS. She goes out of her way to include Goldie and praise her abilities.

The other families are also a joy to be around. I was nursing Goldie at the end of class one day when another mom came over to talk to me. She said she was still nursing her daughter who is a couple months younger than Goldie. Another mom commented on how strong Goldie's ankles were. She happens to be a PT, so we talked a little about orthotics.

During class, Goldie does her best to do what the other children are doing. If it is something she can't do yet, I will pick her up or use hand over hand assistance. I think sometimes her eyes get tired and aren't able to keep up with all the movement. (because of the nystagmus) Once in a while she gets sidetracked and I have to bring her back to the group. But, it's only an hour long, which is just right for her. My 7 year old also loves the class and looks forward to it every week.

The first week of class we received a bag with two drums, two CDs, two story books, and a lion puppet. About three weeks ago I put one of the CDs on while I was cooking dinner. I thought it would be a nice alternative to TV. When the music for the third song came on I saw Goldie tapping her foot out of the corner of my eye. When I turned to watch her the words to the song came on singing "I've got the toe tappin blues. I've got the toe tappin blues" We had been practicing this in class and she recognized the song from only the music! And this was after a two week break from class. Of course I stopped what I was doing and joined her. I learned that not only could she tap her toes, but she could slap her knees with the song. Since then, Goldie has also learned to walk backwards when we sing John Jacob Jingleheimer Schmitt and run forward on the La la la la la part. Who knew music could be PT?

Monday, April 13, 2009

Easter 2009 (more pictures)

Goldie with her sisters.

My mom with the girls.

ETA: I have to brag about the thrifty Easter dress purchase. My total out of pocket for all three was $20.50! Goldie's and Mini Me's were purchased at a consignment sale. Swatcho's was bought at the mall with a gift card that happened to be good at the store with the best price on said dress. I wish shoes were as cheap to come by. Mini Me needed new shoes, but Goldie wore her tennis shoes. They're new enough that they still look nice and they support her feet really well.

Sunday, April 12, 2009

Easter 2009

Here are some pictures Goldie's grandpa took of her today. I hope you enjoy them. His camera has twice the megapixels as mine, so I have a little case of camera envy tonight. (Please ignore the greasy hair look, these were taken after dinner.)

Saturday, April 11, 2009

How to get your sister's Easter candy

Goldie has become a problem solver extraordinaire. I put things up where I think she can't get them, but Goldie has figured out how to outsmart her mama.

The stool she is carrying came from the bathroom to her right. She carries it from one crime scene to the next.

This looks like a good spot.



He he he!

I should also add that Goldie has figured out how to climb onto the fish tank using her stool and up on the kitchen table with a chair. She lost her stool privileges several times today. Goldie also managed to climb onto the back of the couch while trying to get her bubbles down.

Tuesday, April 7, 2009

IFSP - how it went

Thank-you for your prayers. I was able to maintain my composure, stay focused and add some goals for Goldie despite a shaky beginning and rocky ending to the meeting.

My decision to switch to another service co-ordinator has been made very easily after this morning. The SC showed up without Goldie's PT eval. I know this could have been a mistake on the part of the PT, but the SC's job is to get that figured out BEFORE the IFSP not during or after. Then at the very end she mentioned that Goldie's cognitive eval hadn't been scored and tried to blame it on the VT. I did not let her pass the buck. It is her job to make sure it gets scored BEFORE the IFSP. I called the VT afterwards and she will be making sure it is completed, correctly.

Other highlights from the meeting would be her telling me she hopes Goldie doesn't qualify for waiver because that would be a lot of paperwork for her. She also didn't discuss transition like they are supposed to. I'm actually o.k. with that because I don't want to talk to her about it anyway! The brief conversation we did have led me to believe she doesn't know what our different options are.

I'm going to request a new SC and a review of Goldie's file to make sure everything is in order. Just curious, do you receive copies of your child's evaluation scores?

Monday, April 6, 2009

IFSP (I think)

Goldie's IFSP is in the morning. Please say a prayer that I have both wisdom and composure. I was told of the IFSP date by Goldie's PT. Her service co-ordinator has yet to call me. I don't think I've seen or spoken to her since January! I do not plan to confront her about this tomorrow. I don't think it would be appropriate in front of the therapists. But, I am ticked. I should have been the first person called and then a letter is supposed to be sent out to each therapist. Last year, she didn't invite the Vision Therapist. I complained to her supervisor because my kid is legally blind and was receiving VT every week. How do you forget that?

So, this year the VT called her to find out the date of the IFSP. She won't be able to make it, but I'm ok with it because we are decreasing services in that area. At least until we see what the new eye dr. wants to do as far as surgery goes. IF she has surgery, Goldie will need VT to learn how to use her new vision.

Goldie's evals were done last month, so we won't be doing them tomorrow, but I will get the final results. I know where she stands on most of them already, so I don't expect any suprises there. Last year, everybody did all the evals at once and I wanted to cry by the time they left. Ugh.

I also spoke with the SC's supervisor last month at a meeting she happened to be at. So, I'm still suprised that she hasn't called to confirm tomorrow's meeting. I WILL be asking for a new SC after this, in writing. She is not equipped to help us through transition when Goldie turns 3. No way.

On a happy note, I told Swatcho she could make monkey bread in the morning for everyone. She has a recipe she's been dying to try.

Saturday, April 4, 2009

Goldie's 2 Year Check-up

I took Goldie for her 2 year check-up with her pediatrician this week. I have to start by saying how much I love the group I take my girls to. I've been taking my kids there for the last 7 years. Prior to that we tried 3 different practices. Some people think I'm crazy for driving almost a half hour when there is a pediatrician less than 2 miles from my house. Who happens to be a good doctor, she just wasn't very good at telling me, the mom, what was going on. I've never been good at just blindly following directions. I finally got to the point where I decided it was worth the drive to find a doctor I could trust with my child's life. In the last 7 years the girl's dr has added two more doctors to his practice. They are both just as wonderful as him. I am amazed at their thoroughness, they don't miss a thing! But the best part, is they trust me as a mom. If I tell them I think my daughter is sensitive to dairy, they believe me. They've never been dismissive and are always open minded. Another thing I love is how calm and relaxed they are with my children. When I found out Goldie had Down syndrome I was so relieved that we had a good pediatrician already.

So, I asked about Goldie's platelets and was told it was probably a side effect of the anemia and her numbers are no where near what they consider high. I got a scrip for her 2 year labs. A couple of my readers pointed out that I may want to have her zinc levels checked. I'm going to look into that and may stop at the ped and have them add it on. Goldie has an appointment at the DS Clinic in May, so I'll be getting her blood drawn sometime between now and then. I drive 1/2 an hour to the satellite of Children's Hospital because they are the only people I trust to stick my baby.

I also got a scrip for Goldie's Sure Steps and a referral to an ENT. Her left ear needs cleaned and the pediatrician wants it double checked for fluid. I had her hearing checked in December and the results were normal. But, I was sitting in the booth with her and she did not respond to all the sounds on her left side.

Next on the list is that she can't seem to sleep for more than 1-2 hours, so I'd like to see what the ENT thinks of that. She doesn't sound like she has sleep apnea, but I need to rule it out so I can figure out what's going on. Another possibility is that because of her low vision, she's not getting enough light in through her eyes to properly regulate her sleep cycle.

No shots, we vaccinate selectively, so she is current on the ones that we get.

I just realized I forgot to ask about something, mostly because its become our normal. When Goldie wakes up she is very floppy. It almost looks like she's drunk. We can't let her walk and if she is sitting she will repeatedly fall over. It freaks my mom out, but I thought it was caused by her low tone. Right?

And because I feel like posting a picture, here's how my kids sort laundry. Where's Goldie?

This is her after waking up from a nap. She fell forward and went back to sleep.