Livin for the Love

Mother's Day Reality Check

2011-05-13T17:49:00.002-04:00

Goldie is seldom is sick, so it is easy for me to slip into a mindset that we have beat the "low immunity" aspect of Down syndrome. And maybe she has, but what has yet to be conquered is the darn dysphagia. So, on Mother's day, I sung my baby girl through IV sticks (3) and breathing treatments while my would be dinner of pasture raised filet mignon and NY strip, stll wrapped in white butcher paper, lay in a pool of red juice.

While Goldie may catch less than half of the bugs I do, her low fluid intake makes fighting what she does come down with very difficult. This is compounded by the increased difficulty in swallowing when her sinuses are draining. A cold was making its way through our house and I had been worried that she wasn't coughing as much as her siblings and that mucous was, instead, settling in her chest. Mother's intuition, trust it. When I got her to the ER Sunday morning her oxygen levels were in the low 80's! A chest x-ray showed that Goldie had pneumonia. The rest of the day included IVs, oxygen, breathing treatments, antibiotics, and an ambulance ride. Listening to some folksy kid's music on Pandora, we rounded out the afternoon snuggled up in the hospital bed for a nap.

Hank still needs me at night, so I left Goldie in the capable arms of her Daddy. Then, I drove home, crying and feeling torn between my children. Repeat all of this for night two and add in a couple middle of the night phone calls with Goldie SCREAMING in the background. While all of this really stunk, my husband mentioned how much closer he feels to his little girl and I have found even more trust in him as her father, advocate, and protector.

She is home. She is tired. A trip to the post office yesterday, yielded a three hour nap! As for the rest of us, Hank has a double ear infection, the nine year old woke up with the stomach flu, and my hubby worked over fourteen hours yesterday. (I'm thankful for that because it means he has a job and we need the money to cover visits to the hospital). My promise to him when he left earlier: I will not crack up, today.

Finding a Preschool

2011-05-05T22:22:00.002-04:00

Well over a year ago, while I was pregnant with Hank we looked at some preschools for Goldie. I did this as part of the transition process when she turned 3. I didn't see a place that I loved, so we decided to utilize some community programs this year and revisit the preschool options when she was turning 4.

I began my search anew in February when I saw that a Montessori school was having an open house. It was nice, but it seemed like there would be a lot of rules for Goldie to remember and the room had a lot of furniture for her to navigate around. Goldie also learns best in an environment that is free of visual clutter. I spoke with the teacher and explained what Goldie's strengths and weaknesses were. I did not tell her my daughter has Down syndrome. In my experience, it brings up too many stereotypes.

The school's only tuition option was for 5 days a week, so I decided to keep looking. It would cost us a fortune in gas to make 10 trips a week! My next call was to my neighbor. Her kids went to a Montessori school that was 5 minutes away, but only advertises by word-of-mouth. She was happy to call the owner and talk to her about Goldie.

The owner, Miss M, has really exceeded all of my expectations. She has met Goldie one-on-one twice and has had me observe the classroom one morning by myself. Before I sat in on a class, she told me "I don't want you to get overwhelmed and think that Goldie can't do this, because she CAN." Miss M. has asked me to bring Goldie once a week for 1/2 just to get her used to the classroom and allow them to get to know her. I must have looked a little nervous because she assured me that Goldie will be going to school there as long is that is what I want. The plan right now is for Goldie to attend two mornings a week in the fall and maybe add a third day after the Christmas break.

A couple months ago I was asking myself, "Am I crazy to think that my child with Down syndrome can go to a typical preschool without an IEP and supports?". But, after seeing Goldie in the classroom and feeling the kindness of the students and teachers, I know Goldie will just blossom at school next year. She is already requesting "school" on a daily basis.

This is my first post using a blogging app. If it works out, I may be able to post more often than once a month!

Down Syndrome and ADHD: Our Diagnosis Story

2011-04-10T23:55:00.000-04:00

If you would have told me 4 years ago that I would be medicating my child to treat ADHD I would have scoffed and presented you with a bottle of fish oil. Just one of many alternative treatments for attention deficit disorders. I have the Down syndrome to thank for keeping me humble and teaching me that I don't know as much as I'd like to think I do.

I'm sure other parents of children with Down syndrome wonder if their child's attention span is typical of a child with developmental delays or has it gone into the realm of ADD/ADHD. I'm not a medical expert, but I can tell you how we made that determination.

In September (Goldie was 3 1/2) I noticed that I was redirecting her towards acceptable activities every couple of minutes. In addition to the redirection and positive reinforcement, we also started explaining consequences and using time-outs. Goldie responded very well, but it illuminated the fact that the problem was not behavioral. Even when I was sitting on the floor playing with her, she wasn't able to stick with an activity for more than 2 minutes.

My next thought was that the problem was developmental. Was I expecting too much from her? Were her developmental delays responsible for her lack of focus? I did what all mothers do and began comparing her to my other children at that age. My oldest could sit and listen to me read all day at the age of two. Daughter number two couldn't sit through anything longer than a board book until she was 5 and would not watch t.v. until she was 4. Yet, she could still stay on task longer than Goldie. Which brings us to Hank. At 15 months he will sit and play with a toy for 3-10 minutes.

During this time I happened to be talking with a friend who has a daughter with DS that is a year older than Goldie. We both agreed that our children needed help choosing an activity, but in Goldie's case it would only keep her occupied for 2 minutes. Times like these are when I wish I was active in a real life DS support group so that I could have more exposure to other children.

For as long as I can remember, I kept telling myself, that when Goldie's vision and fine motor skills improved she would be able to sit and play. Her vision improved tremendously and she is able to do many things, but her ability to focus on an activity never improved. As she grows we see her making progress in so many areas. Attention has just not been one of them.

After implementing a list of alternative remedies as long as my arm and finding no relief I placed calls to Goldie's pediatrician, the Psychology department and the Down Syndrome Center at Pittsburgh Children's Hospital. The DS center was very helpful. One of the first things they asked was for Goldie's evaluation scores from her IEP. I know most of us don't like these evaluations, but I was glad to see that the scores were useful to ME for once. In most areas Goldie had a 25% or less delay. Except in Attention and Memory where she had a 50% delay.

The final step was having her therapists complete evaluation forms for the Down Syndrome Center. I recieved my own parent survey to fill out. The results? In her doctor's words "She is off the charts for ADHD. I am surprised she is as well behaved as she is. I expected her to be all over the place." (Thanks go to the iPad for keeping Goldie seated. She must have gone through 10 different apps in just as many minutes.) He pointed to the chart and showed me the range in which children with DS normally fall and the range in which Goldie was. We discussed treatment options and possible interactions between Goldie's supplements and medications. Later, I received a large packet in the mail on Down syndrome and ADHD. What I've read so far has been both disturbing and helpful.

I'm sure your wondering how the things are going with the medication. While I worry tremendously about the long term consequences and side effects, right now things are much better. Goldie has not had any negative side effects from the medication and I feel like it has bought us some time to continue exploring other treatments.

If you are looking for more information here is a link to get you started.
http://www.riverbendds.org/index.htm Click on Medical Series, then ADHD.

Free Kindergarten ABA Apps for Autism Awareness Month

2011-04-04T23:48:00.000-04:00

Kindergarten.com is offering all of their ABA apps free for the month of April in honor of Autism Awareness Month. I was actually going to purchase some this week after hearing about them over at Unringing the Bell. Really, I bought an iTunes card at the grocery store this weekend so I could get my fuel discount. Glad I didn't have time to use it!

FYI: The ones listed under the heading Flashcards were always free and the rest of them were 99 cents.

I would recommend the receptive language ones and I downloaded the Action Flashcards for Goldie because verbs are something she has been working on in speech.

March 21st is World Down Syndrome Day

2011-03-19T00:00:00.005-04:00

Just a reminder that Monday, March 21st is World Down Syndrome Day. March 21st was also my due date when I was pregnant with Goldie. I guess she didn't want to be defined by her diagnosis since she chose to make her entrance ten days sooner!

Here is a link to the events going on in the United States on 3/21.

http://www.worlddownsyndromeday.org/usa.htm

Down Syndrome Deals!

2011-03-18T22:08:00.001-04:00

Woodbine House 25% OFF

MARCH 21 only!! Woodbine House is offering an online sale of 25% off 40 products on Down syndrome and related issues in honor of World Down Syndrome Day. The sale lasts just for one day -- March 21, 2011, so be sure to order online on Monday at www.woodbinehouse.com

Talk Tools 40% OFF DVD Sale

TalkTools is offering 40% off of their self-study dvds. I've also heard that if you call these dvds are available to parents for 50% off. Wish I had known that! If you are looking at the Down Syndrome Population dvd, mine is for sale. I have the CEU paperwork to go with it, as Goldie's therapists didn't need it. Just leave a comment or send me an email.

Down Syndrome: What You CAN Do
by Kim & Qadoshyah Fish

If you don't already have this awesome book now is the time to get it with free shipping until 3/21. Go here and use code GROUND305. I won a copy back in December and have referred to it numerous times since then. It is all the research I've been finding here and there, plus some a whole lot more, put together in one easy to use book. Just today I was ready the articles on Neurodevelopmental Therapy. This book is so positive and comprehensive; I wish it had been available when Goldie was born.

Goldie Knows the Alphabet

2011-03-18T08:00:00.001-04:00

One thing I've learned is that Goldie is not a performer. She does not like to be tested on what she knows. A couple nights ago, Goldie got out her alphabet letters, so I grabbed the camcorder on the off chance that she would show off for me. I got lucky! Her are a couple videos of her identifying the letters of the alphabet. Part 2 includes some lowercase letters. You'll notice that instead of naming a couple of the vowels she tells me what sound they make.

Warning: the lighting is poor, her pajamas mismatched and the slip cover for our couch was in the laundry, but this is real life with 4 kids!

Happy Birthday! Goldie is 4

2011-03-17T23:40:00.000-04:00

Goldie had a birthday last week! If you ask how old she is she will proudly hold up four fingers and say "four". After some practice she is even able to get her little thumb against the palm of her hand instead of behind her fingers. I never thought I would enjoy life's little details so much!

My favorite moment from her birthday this year: Goldie had done something she's not allowed, I don't remember what, and I was explaining why when out of nowhere she says, "Birthday. Four." and rooooolls her eyes. Like "Hello Mom, it's my birthday, I can't be in trouble. I get a free pass today!" Of course I cracked up after that, probably reinforcing whatever behavior I was trying to correct.

The last year has brought some big accomplishments! I'll list a few that I can think of off the top of my head.
- looking out for her brother (she was yelling "hurt" at him tonight as the went after an electric cord!)
- learning all the letters of the alphabet, upper and lowercase!
- asking and answering questions
- dressing herself
- beginning to sight read
- she can identify 9 different shapes and 10 colors
- growing tall enough to sit on the swing without help
- potty training, it has been over a month since we quit the pull-up habit!
- blowing bubbles
- turning door knobs

Wow! Just looking at this list has me excited for what the next year may bring!

Getting to the Bottom of Things or ADHD and Sensory Stuff

2011-03-09T23:38:00.000-05:00

For over a month now I've had a half finished blog post titled "Down syndrome and ADHD" waiting for me to find the time to complete. Goldie was diagnosed with ADHD last month. I pursued the diagnosis for her so she would have access to treatments that I can't provide on my own.

Until recently, Goldie didn't have a consistent OT. I've inquired to her current and old OT about trying Therapeutic Listening or a weighted vest to help with her lack of focus and attention. I was beginning to think they were blowing me off, but I politely persisted.

Goldie's OT provided me with a sensory inventory to complete. I knew she would have differences in a couple areas, but the inventory revealed her sensory needs are much greater than we had realized. Her OT and Speech Therapist admitted that they had never observed behaviors that would indicate Goldie has a sensory processing disorder. We had a long and productive conversation where I was able to give the Occupational Therapist insight into her behaviors at home. Together we came up with some ideas to help Goldie.

Initially, it will mean more work on my part. My thoughts are that it can't be worse than redirecting her every two minutes! We already do a lot of sensory activities with Goldie like swinging and sensory tubs (probably why her behaviors weren't more obvious). Overall, I am relieved to know that this isn't just a "DS thing" and there is more that we can do for her. So when I'm not brushing, compressing joints and trying to keep the headphones on, I'll be working on some posts about these new diagnosis. If any of these are things you are already dealing with, I would love to know your favorite resources, books, etc...

So Smart!

2011-02-21T11:18:00.000-05:00

Goldie was folding laundry today and came across a dress with little hearts all over it. One of the girls at Children's Hour has the same dress and wore it on Wednesday for the Valentine's Party. Goldie wore a different dress, but I still pointed out what her friend had on.

Sooo, I asked Goldie, "Who has the same dress and wore it to Children's Hour?"

Goldie replied, "Sydney, Sydney!"

Heck yeah! I always wonder how much she can remember. It's sooo hard to tell when a child has a speech delay and isn't able talk about their day and events like a typical child. So nice to have a little peak as to what she is taking in.

Down Syndrome Research Plan

2011-02-20T08:26:00.000-05:00

DownSyndrome Achieves has recently held two web conferences on the abandonment of DS research. Now there's a title that gets your attention! I wasn't able to fully view either one, but the bottom line is that DS research is grossly underfunded and their is a huge disparity between the amount of funding that goes to fund Down syndrome research versus other conditions. You can sign up for more information at http://dsachieves.org/ .

I also found the National Institutes of Health Research Plan on Down Syndrome. It is an eighty page downloadable pdf. I have it downloaded to iBooks on my iPad for reading while Goldie is at therapy. Remember, information is power!

Research Study - Feeding Infants with Down Syndrome

2011-02-12T23:34:00.001-05:00

Here is a link to a survey For biological mothers of children with Down syndrome. It doesn't take long to complete and is a great way to use your experience to further research for babies with Down syndrome.

http://www.mdsc.org/index.php?option=com_content&task=view&id=424&Itemid=39

The Highs and Lows of Applying for Waiver Services

2011-01-14T10:47:00.019-05:00

One of my grandmother's prized possessions was a dining room suite she was given from her sister. The story goes that it was an expensive antique that her sister didn't have space for after her divorce so she gave it to my grandparents for helping her out. It's four pieces comprised 70% of the space in her dining room. The wood was thick and dark and carved in a gothic style that was completely out of place in her little cape cod home. In addition to the table was a long buffet against one wall and a china cupboard in the corner.

What I remember most about this table is not the carefully planned holiday meals. It is the layers of tablecloths, placemats and finally papers. Growing up I would walk around the table wondering about all the papers, mail, index cards, and sticky notes that were neatly laid all around it. In the adjacent room was a tiny office with a bulletin board and filing cabinet. The bulletin board was filled with more index cards and a calendar. My grandmother, like myself, was the type of person who needed to see what she had to do next. I think we would be called pile-ers.

When my husband and I were dating he mentioned how unorganized he thought this was. He couldn't understand why someone so neat and tidy as my grandmother would allow her antique dining room set to be blanketed with papers.

Today, my husband I both understand her system. She had a child with special needs.

I'm sitting here with 12 pages of notes detailing phone calls, agencies, numbers etc... In the last two months I've made close to 30 phone calls. All in search of services and supports for Goldie. Our family needs respite care. To get that she has to qualify for waiver services. That requires a psychological evaluation and an IQ test. To make it more complicated "they" can't find a doctor that will take Goldie's medicaid. The details of why are so tedious I don't even want to type them.

I'd rather talk about paper. I write everything down while on the phone. A name and number isn't enough. I need to know why I'm calling that person. I need to document what I'm told. Which brought me to my low point of the day. (Ironically,it wasn't holding my daughter while she wretched into a bucket at 3am.) It was the woman at the Department of Public Welfare who bore the brunt of my sleepless night. She casually told me Goldie's medicaid case was closing tomorrow and she wouldn't be covered anymore. No reason given. Then she began rattling off names and numbers and what I should ask these people to do. I kept telling her to slow down. (I was nursing Hank in one arm and writing with the other.) Finally, I began to cry and screamed at her to just STOP. "I have 4 kids, I can't remember it ALL. I have to write everything down."

What good does is it do me to call Mrs. Taylor if I can't remember that she is the person with the special list of doctors that will accept medicaid.

Except, she's not. She explained that yes, she has a list, but they probably won't take Goldie's medicaid. Then, the best part of my day, was when she told me "the system is horrible at best". At last, someone who will admit it!

(I just want to add that Goldie's medicaid does not run out tomorrow. She has another 30 days of coverage and they already have her renewal information in the system. So, she is good to go. No, worries.)

Coincidence

2011-01-13T22:47:00.000-05:00

It's probably not a coincidence that my last blog post was the day before my husband gave me an early Christmas present. Just to prove that men might really be listening when we think they've tuned us out, he gifted me with an iPad. It feels good to be the luckiest girl I know! To top it off, he took charge of the kids for the day so I could play with it. I love it, Goldie loves it, even Hank loves it. But, my PC is definitely jealous. The iPad is so fast, quiet, and portable. It's the clear choice over the computer ~~with a fan that never shuts off and runs so loud that you have to turn it off to watch television~~.

I'll do a brief recap of the other things that have kept me from sitting at the keyboard. Sick, Christmas, skin cancer (I'm ok, its been removed), Hank's FIRST birthday, cleaning and organizing with super husband, potty training, Mary Poppins, and now more sick. I left an item off of this list. It's something I've been working on for a couple months now and it needs its own post. However, don't get too excited, its about the dirty details of services and the system. Really, I'm writing it more for my sanity than anything else.

Last Call for Shutterfly Holiday Cards!!

2010-12-15T16:58:00.000-05:00

When I saw Shutterfly's Holiday Card promotion giving bloggers 50 free holiday cards I signed up right away. And that was as far as things got until this morning. I had Christmas ensembles laid out for each of us to wear and Goldie's Christmas party. Then Children's Hour was cancelled and that gave me the time I needed. Imagine my surprise when I logged into Shutterfly and saw that this promotion ends TONIGHT at midnight! Do I have good luck or what?

I have been a customer of Shutterfly for 8 years. I love their photobooks (Goldie really loves them), cards and invitations. I enjoy being able to pick and choose what I want online and not have to stand in the middle of store with 4 kids running circles around me. If I'm lucky. Sometimes, they just take off in straight line.

Here is our Christmas card from 2008:

Plaid Christmas

Shop Shutterfly for unique, personalized Christmas photo cards.

View the entire collection of cards.

Here is a holiday card/birth announcement from last year. I just couldn't send out cards until all my children were here!

Family Snowfall Teal Christmas

Create beautiful photo Christmas cards at Shutterfly.com.

View the entire collection of cards.

I've been browsing this year's Christmas cards and here is what I'm looking at so far:

Sharing the Love or Our Shining Stars

Homeschooler with Down Syndrome Signing "It's About the Cross"

2010-12-14T21:52:00.000-05:00

This video is from a mom on my "local" homeschoolers with special needs email list. She is graciously letting me share her beautiful daughter Abigail signing "It's About the Cross" by The Ball Brothers.

Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.

Homeschool Preschool - Color Sorting

2010-12-02T08:00:00.003-05:00

Goldie has been keeping me very busy this fall doing all kinds of preschooly things. (I've been heating my kitchen with my laminator!) Goldie's latest achievement is sorting by color. Sorting is an important part of an early math curriculum. We started working on this around her second birthday at the urging of her vision therapist. I didn't think she was ready for actual sorting so I focused more on just learning colors. Once Goldie was able to sign her colors (thank-you Signing Time) I was able to know how well she could identify and label her colors.

First I tried having her sort with Busy Bugs. But, she was so distracted by all the different types of bugs that she didn't care what color they were. Spider, caterpillar, fly, etc...

Then I had a lightbulb moment when Swatcho left her Sorry! game on the kitchen table.

Sure enough, without the distracting bugs, Goldie was able to sort the red from the blue and place them on the correct squares. Another important math concept is one to one correspondence.

After this, I gave Goldie red, yellow, and blue buckets with a pile of colored cubes. She shocked me by immediately sorting them out. I had to run and get green and white bowls. If more than one color was stuck together she would pull them apart and place each cube in its correct container.

Moments like these just blow me away. I find myself thinking back to when Goldie was born and being told she had Down syndrome and then at a year old when I was told she was legally blind. I wondered then if these days would ever come. Now, I see her love of learning and how she wakes up one day and just does something she's never done, but acts like she's always known how to do it. And my heart overflows.

Worldless Wednesday - Goodbye Fall

2010-11-30T23:30:00.001-05:00

Buddy Walk 2010

2010-10-20T20:45:00.001-04:00

The fam.

Goldie riding the trackless train.

Swatcho and Goldie riding the train.


The entire length of the walk was covered with people from beginning to end! It stretched out behind us just as far.

Fall Sensory Tubs

2010-10-19T20:12:00.001-04:00

I always keep a tub of dried beans around for sensory play. Goldie and my second daughter are the ones who love to play in them the most.

I decided to change it up for fall. There was a 4 lb bag of popcorn sitting in my pantry for the last 18 months, so I switched beans for popcorn. We've been hiding farm animals in it, but you could also use acorns or small pine cones.

Goldie is doing well with pouring, so I added these small bottles to give her more of a challenge. FYI: She only plays with these on our enclosed porch where her baby brother is never allowed.

Then I found some Halloween inspiration at No Time for Flash Cards. I decided to put the black beans in a plastic orange pumpkin and use some counting bugs we already had.

Goldie wasn't very impressed. I think it was hard for her to see into the pumpkin and it didn't give her enough room to really play with them. I'm going to put them in plastic tub, unless she like my next idea.

That was to make and eye-spy container. I took a large plastic container that used to have almonds in it. Have I mentioned how much Goldie loves almonds? I had to start buying them at Sam's Club. I put the beans, bugs and some other toys in it. This will allow both Goldie and Hank to play, since the beans are safely inside.

If you have any great ideas, please share them. Once fall is over, we have a long winter ahead of us. Its always good to have a few tricks up my sleeve.

OT for Girls!

2010-10-18T12:36:00.007-04:00

This post is full of gender stereotypes. As a mother of girls and now a boy, I gave up long ago on staying gender neutral when it comes to toys. You see, they know from birth that they are boys or girls. I gave my oldest a toy drill and she used it as a hair dryer. Hank loves to flip the baby doll stroller over and play with the wheels. Of course, I do have my limits. Our house is a Barbie and Bratz free zone.

About three years ago, my daughters begged me to buy them Snap 'n Style dolls. I resisted as long as I could because we already had Madeline, her friends, babies, and American Girl dolls. But, Grandma bought some and I eventually caved. I really thought they were too babyish. So, they've sat in the basement until this summer. Goldie and the neighbor girl, she's 8, play with them everyday. I love this toy because Goldie doesn't need any help. She can just be one of the girls, enjoying her dolls. The clothes snap onto the front of the dolls with one finger, or several fingers if you happen to have some low muscle tone. The hat and shoes are hard for her to put on, but she doesn't seem to care and it gives her a challenge.

Now, I'm not a huge princess fan, but when I saw this styling kit at my sister-in-law's house, I knew Goldie had to have one. It has a flat iron and a curling iron. The flat iron works like tongs, which the OT has been using to help Goldie develop pre-scissor skills. The curling iron is similar, but you only need to use your thumb to open it. After a couple months of play, Goldie can use the flat iron. She's only doing straight hairstyles, for now! I picked it up at Wal-mart for around $15. I think. I'm sure it was under $20, so don't buy it from Amazon for $35!

Inchstones

2010-10-14T23:56:00.000-04:00

Goldie has met some little milestones, some call these inchstones, that I need to document before I forget the details. She is 3 1/2 and moving full steam ahead toward 4!

- Goldie can dress and undress herself, even in her brother's clothes. She mastered this skill completely on her own, all I did was leave baskets of laundry around for her to practice. BTW, she can also fold washcloths, handtowels, and diapers.

- Last night, upon noticing that her sisters were dressed for bed, she walked upstairs, got her pajama top and matching bottoms out of her drawer, came back down and threw them at me.

- At dinner, she served everyone salad, with tongs. Weeks of climbing on the table to get second helpings has finally paid off.

- At Children's Hour, they ran out of tiny plastic cups for snack time. So the kids had to drink out of regular styrofoam cups. I just knew that Goldie would need help. She told me to go away and drank two servings of apple juice without spilling or choking!

- Before snack, they had a visit from the fire department. When they asked for a volunteer to demonstrate "stop, drop, and roll" Goldie walked up to the front of the group, dropped to the ground and rolled. She was saying roll the whole time, then she stood up and clapped for herself. All the volunteer fire fighters knew her name before they went home. ;)

- Wishes do come true, I have another little girl who loves Madeline. My oldest was all about Madeline, so I've been saving all the dolls and books hoping they would get some more love.

- When I was reading "line", as Goldie calls her new favorite story, I stopped several times (leaving off the last word) and she was able to complete the rhyme! Another first!

- Goldie is really into learning her colors. She loves to sign and say them. She can sort red, blue, yellow, and green.

Goldie Goes to Children's Hour

2010-10-07T23:30:00.003-04:00

I've mentioned before that we are not sending Goldie to preschool this year. So, you may be wondering "What does she do?"

I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!

There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.

I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!

My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.

During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.

I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.

The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.

At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!

Wordless Wednesday - Fall Art

2010-10-06T11:21:00.002-04:00

Comparing Therapy Service Providers - Part 3 or Let's Talk Money

2010-10-05T23:21:00.000-04:00

This is the last in a series of posts comparing the public and private therapy providers we've used since Goldie turned 3. Part 1 is here and Part 2 is here. This is only the experience of one family living in a fairly rural county in Pennsylvania.

One thing I didn't mention in the previous posts was how these services were paid for. I believe the Early Intervention program receives county, state and federal funds. I'm not completely sure, but there is no cost to use their services. The private speech and OT are billed to our private health insurance through my husband's employer. (We exhausted that coverage a couple months ago.) Then, whatever isn't covered is paid by Medicaid. Goldie qualifies for this because she has a diagnosis of Down syndrome.

Another program we utilize is HIPP, Health Insurance Premium Payment. HIPP pays the insurance premium for the employee and the child with the disability if it is more cost effective than adding the child onto one of the state's insurance plans. I've learned this program can work a couple different ways.
1. My husband's current employer deducts the employee portion of a family policy directly from his paycheck. Then, they asked that HIPP send the reimbursement directly to us.
-or-
2. His previous employer (where he worked when Goldie was born) continued deducting the employee portion of the health insurance premium, had the reimbursement from HIPP sent directly to themselves, and kept it all.

When I talked to the very nice HR lady about these two scenarios her reply was that "We will pay the same for your family's insurance that we would pay for any of our employees. You are the one's raising Goldie, that money should go to you." You could have knocked me over with a feather. My husband drive too far to work hours that are too long, so it warmed my heart to know that he works for a company that is honest and caring.

Back to my comparison, I've thought about what we would do if Goldie's private therapy wasn't covered. I know that in some states these services wouldn't be covered. Would we give it up? No way! We would find a way to pay for it because it is making a difference in our lives. Even if it meant organizing fundraisers and picking up a part time job.

Wordless Wednesday - 9 Months

2010-09-29T00:01:00.001-04:00

Good Deals on Talk Tools and more!

2010-09-26T23:37:00.000-04:00

I tend to fluctuate between wanting to give Goldie every opportunity to succeed and feeling like I'm just throwing money at her disability. My other kids had a shape sorter, Goldie had 3. Ditto for stacking toys, puzzles, and pegboards. Don't even ask how many board books I've bought for our low vision toddler.

So, I'm always on the lookout for a way to save some money. This month has brought a couple good deals our way.

Let's start with two that I found over at Got Down Syndrome's blog.

First, the book Down Syndrome: What You Can Do is available for 10% off. Offer is good until Sept 30, 2010.
The next one from Talk Tools is also good through Sept. 30th.

"Our MOST popular promotion is back!

RECEIVE 40% OFF ALL EDUCATIONAL DVD's!!! -- Prices as low as $39.00!

**Our Self-study DVDs are among the most accessible and convenient means to acquire continuing education units (CEUs), and upon completion ITI will make sure the required documents are filed on time and correctly with either ASHA or AOTA. Additionally, the presence of full-length one to two day workshops in your multimedia library will allow you and your colleagues to review the material whenever, and at whatever pace, you like**

Visit TalkTools website at www.talktools.net. I ordered some things and have been sharing them with Goldie's therapists.

The third deal available right now is from Woodbine House. In recognition of National Down Syndrome Awareness month they are taking 20% off of books and DVDs on Down syndrome. Just go to their website and click on "specials" to see the items included in the sale. This offer is good during September and October. I'm thinking I'd let to get "Views from Our Shoes" for my girls.

Last, but not least, is my newest place to shop on the web. Since Hank hates shopping and Goldie isn't much better I'm usually rushing through the store trying to get out as fast as possible. I always forget something. This is why I love shopping online. Some of Goldie's supplements I can only get online. I have had to order from 3 different places to get everything we need. Now, I found a store that sells both the ginkgo and fish oil Goldie takes. Take 20% off your first order at Soap.com with promo code WIFF2267 . Don't forget the free shipping on orders over $25! Soap.com is the sister site to Diapers.com, so I can even add replacement straws for Goldie's cups or diapers for Hank to our order.

Wordless Wednesday - Baking Blueberry Muffins

2010-09-15T20:33:00.002-04:00

Comparing Therapy Service Providers - Part 2

2010-09-07T23:34:00.001-04:00

When Goldie was a year old, a pediatric therapy provider moved in 2 miles from our house. Considering we live in a pretty rural area, this is quite a blessing. Otherwise, we would be driving 25 minutes to the nearest outpatient therapy office.

At Goldie's 3 year check up I asked her pediatrician for a prescription for a speech and occupational therapy evaluation. I made an appointment for the evaluations and brought the prescription with us. After the evaluation, it was recommended that Goldie receive two sessions of speech and OT weekly, for thirty minutes each.

Speech
Initially, things got off to a slow start. with therapist B. She was there for two weeks, then left. Goldie worked with her supervisor until therapist A was hired to replace her. The supervisor was wonderful, had heard of Sara Rosenfeld-Johnson, and noted in Goldie's chart that we would like to use her techniques.
The first quality I noticed in "Ms. A" was that she has high expectations for the children she works with. I love this about her, but I've seen other parents scoff at her ideas. Some of the things she works on are: making choices, labeling, indentifying, using two words together, using sentences, and speech sounds. She also, does oral motor work, but I'll get to that later.
Goldie has begun to use a lot of words and phrases. When we talk to her she always repeats back part of what we said. I've heard a lot of new words from her doing this. Goldie can tell us "I want ___". She also understands "if/then" statements. This comes in handy for transitions and when she wants to do something and I need her to do something else. For example "If you wash your hands, then you can have a snack."

Occupational Therapy
Goldie took to her new OT, "Ms. M", right away. Ms. M also has high expectations for Goldie. I have to admit that even I was skeptical at first because of Goldie's low vision. She does much more than simply work on fine motor skills. Goldie does many activities while sitting on a swing or therapy ball to improve her core strength, balance, and eye hand coordination. They also work on dressing by having Goldie remove her shoes and put them on before she leaves.
I have seen an improvement in Goldie's arm, hand and core strength. She is also beginning to dress herself independently and can completely undress herself.

The Best Part!
Both therapists work together on oral motor activities to help Goldie with drinking, tongue and lip movements, etc. This was nearly impossible when Goldie was in the birth to three program and was not an option within her IEP. I wrote more about it here.

More Details
The office has mostly bare walls with an occasional B&W photo of children. It is very neat and clean. Goldie has little to no distractions (most days).
Goldie enjoys being there and trusts her therapists. So do I.
There has not been as much consistency as I would like. Her OT is on maternity leave and they have 2 different OT's covering for her. Then, when I was making our fall appointments the scheduling person switched Goldie to a different speech therapist. I don't know what made me ask if she made the appointments with Ms. A, but I was glad I did. I let her know it was absolutely not acceptable to shuffle my child around and the situation was rectified. It bothered me to find out that it was intentional. They were moving all of her Thursday kids to a new therapist's case load. Now I know to be on my toes when making future appointments.

Comparing Therapy Service Providers - Part 1

2010-09-03T23:17:00.003-04:00

Occasionally, as I'm reading other blogs, I run across the question of weather private therapy is "worth it". So, I thought I would write a post (or 2 or3) on our experience with both public and private agencies. I'll have to start way back in March, when Goldie turned 3.

State of PA Early Intervention

During the IEP process, one of our options for Golden was to place her in a classroom where she would receive speech, OT, PT, and a vision teacher on a consultant basis. This means that she would never be entitled to individual or pull-out sessions. I was told that the therapists sometimes worked one on one, but it was discouraged. In this model of service delivery the therapists simply consult with the teacher about how to meet the child's needs in the classroom. I inquired specifically about how they would incorporate oral motor therapy this way and was told it would be done as a group activity. Choosing this option would give a child the maximum amount of classroom time, which can be great if they have minimal delays or a really great teaching staff.

The second option, and the one we chose, was to refuse a classroom placement for Goldie and receive services on an itinerant basis. We live in Pennsylvania where the law mandates that each area of delay must be addressed in the IEP. This meant that while we only wanted speech and occupational therapy for Golden, we had to have speech, OT, PT , and a vision teacher. They did not force us to have a special education teacher because we are homeschooling and I will be doing the teaching. Her IEP was written to have me bring her to the classroom for speech and OT weekly. PT would be provided every other month at our home, except in the summer. The vision teacher would consult with me on a monthly basis.

How it played out:
I never heard from the PT in the six months following the IEP meeting.
The vision teacher was nice to consult with on goals for Goldie, but was unable to provide us with any new activities or strategies. She made some nice charts for me to keep track of Goldie's progress.
The speech therapist and the OT had very tight schedules. They could only see us at lunch time when the classrooms were empty (mostly). This was Goldie's normal nap time. Most of the time she was asleep when we got there and I had to wake her up.

Initially, Goldie didn't like the speech therapist so I sat in the classroom with them. This showed Goldie that the ST was someone I knew and trusted. We continued this for about a month. The last session was just Goldie and the ST. She was very impressed that Goldie could follow the simplest verbal instructions. For oral motor therapy she used a work sheet with a face on it and circles at the bottom. Every time Goldie stuck her tongue out (not up or anywhere specific, just out) she could put a paint dot on a circle.

Moving along to OT, he scored big points with Goldie simply because he was a man. (What can I say, her Daddy works long hours?) He worked with Goldie on a variety of fine motor tasks such as pre-scissor skills and using two hands when working on a task.

Other noteworthy items: Goldie's biggest struggle, drinking, was not addressed by anyone because we refused to put her in a classroom. Drinking could only be addressed if she was there for snack time.
The classrooms where Goldie received services devoted a large portion of space to adult work areas. Each of them had at least 4 adult work areas and the clutter that comes with them. The walls were covered with "stuff" for both the children and adults. Every vision evaluation Golden has had recommends that she needs things to be kept simple and uncluttered.
There was one speech session were Golden was unable to attend to the ST because of an adult the room who was being loud and distracting.

I don't think this is shaping up to be as "objective" as I wanted it to. But, by the time Goldie's therapies started I had been jerked around a bit by the supposed Service Coordinator and was wondering if I would ever meet someone who could see Golden and not her disability.

I'll leave you with a picture of Goldie on our field trip to the Carnegie Science Center. It is only $1 per person for families of a child with a yellow ACCESS card (Medicaid).

Helping Goldie Conquer Drinking

2010-09-02T22:23:00.000-04:00

Normally, when I write about Goldie's drinking, it's a post brought on by frustration and fear. So much has changed since April when I wrote this. I made another appointment with the ENT. He recommended speech therapy. At that point she had been seen by 5 different speech therapists and 4 occupational therapists. (And had been receiving both on a weekly basis for years) We discussed doing another swallow study and even using a scope to see what was going on. I went home and talked to yet another ST about the value of these tests for Goldie. My husband and I decided we would try one last thing before subjecting Goldie to more tests.

Goldie had started private speech and OT in April, so by the beginning of June she was feeling very at home with them. I explained to them that Goldie's #1 problem was drinking and getting enough fluids. The very next week they began co-treating for 15 minutes each week. Then the following 15 minutes the OT continued working with Goldie on drinking and other oral motor exercises.

Goldie's progress has been nothing short of astounding! Within two weeks we no longer had to thicken anything she drank. They immediately identified which straw cup (of the many we own) worked best for Goldie. After 4 weeks I could put water in her cup. This is huge because she always choked on plain water. Now she is able to drink from a small open cup at mealtimes and can have juice boxes/pouches when we are at picnics. It was so nice to take the kids to the park and just throw a Capri Sun in the bag for each of them. I love the way she holds on to the top of the pouch and sips from the straw. Very cute!

Now, we just have to work on her brother's food "issues". He has a gag reflex that just won't quit and a very sensitive system.

Ka woop

2010-08-07T12:18:00.013-04:00

Ka woop is how Goldie asked for more cantaloupe at dinner tonight. She even put a little pause in between syllables. It was so cute, we kept coaxing her to say it. Twice was all we got.

Her speech therapist has been working on vocabulary with her. To be honest, I'm not sure why. Well, not really, I do know Goldie has to understand words before she can begin to use them. But, I don't know if the ST realizes how many words Goldie knows. I had also hoped to see more oral motor activities being done. I asked for a copy of the treatment plan so I can get a better understanding of what strategies she's using and the goals they are working towards. For what its worth, I really like the ST. I've been very impressed that she has high and appropriate expectations of Goldie.

In the mean time, I decided to start keeping track of just what words Goldie can say. I started yesterday counting only spoken words, no matter how hard they were to understand. I was blown away that she used 87 different words!! I had no idea she was using that many. Today we weren't as diligent, but I noticed a bunch of words that she didn't say yesterday, so tomorrow we are going to keep track again. I also think its important that most of these were said without prompting. She either initiated the conversation or repeated them after I used them in a sentence. Goldie is not a "performer" so the best way to know where she is developmentally is to watch and interact with her during normal family routines.

Card Campaign for Sarah & Joyce

2010-08-07T00:13:00.000-04:00

SARAH'S 21ST BIRTHDAY & GRAND OPENING OF JELLEN'S HOUSE OF FABRIC CARD CAMPAIGN!!!

As someone who learned to sew at about the same time I learned to tie my shoes and would love to be 15 again just so I could go back to my job working in a fabric store and who also has a daughter with Down syndrome, this story makes my heart sing. So, please go over to ReJenerationS and read about what you can do to help celebrate!!

Missing Post?

2010-07-24T09:26:00.000-04:00

Has anyone ever had a post disappear from their blog? One of my first posts was a few short paragraphs about breastfeeding Goldie. I went looking for it this morning and it is gone. It still shows up in my reader, but when I click on it, I'm taken to the message "that page doesn't exist on the blog ..."

A friend sent me a link to the Breastfeeding Cafe blog carnival. Today's topic is breastfeeding in special circumstances. So, maybe its time for me to re-post or write something more detailed and informative.

Brakes & Breaks

2010-07-21T14:01:00.000-04:00

As a mother of four, it isn't often that I get to take a break longer than nap time. Until, life puts the brakes on. I had surgery 6 weeks ago. It was scheduled and planned well in advance. Still, nothing really prepares you for not being able to care for your family. I always try to see the positive in everything, but it was really eluding me in the weeks and days leading up to the surgery. Of course, in the weeks since then it has only become more obvious. My life was out of balance.

It is very easy for me to live in Down syndrome World. It's so simple to get there. All I have to do is take a seat at the station (between the family room and the kitchen) and wait for DSL express to pick me up. Then, I simply choose from over 200 pre-programmed stops (favorites, bookmarks). Oh, I better not forget to pick up the mail (Yahoo groups) while I'm out! It stacks up fast.

Now seriously, I'm a research junkie. I do believe that has been a good thing for Goldie. There is a steep learning curve when your child is born with any kind of special needs. However, I think I've covered enough of that curve to warrant taking a break for a while. I wish I could say I came to this conclusion on my own, but I had some help from a too slow to use laptop. Not to mention being in too much pain to even think about sitting at my desk.

With the help of my Mom and my husband we pulled through. I'm even caught up on some of the movies I missed in the last 3 years along with having read all the books in the Twilight saga. Reading fiction was something I hadn't done since I was pregnant with Goldie. I also used the time to write homeschool goals and objectives for my two older girls, along with making some curriculum choices. Now that I've put the extra chromosome back in line I can keep moving forward with life, and this blog.

Feeding Blog

2010-06-04T23:17:00.000-04:00

While scouring the internet in search of this straw I came across a blog dedicated to pediatric feeding disorders. It's called Food Chaining with Cheri Fraker and Laura Walbert. I spent a lot of time reading through their posts and am very impressed, not only with their knowledge, but their insight and compassion for children. The commonsense approach (mayonnaise is not a food) is just my style. Hopefully, I can find some new ideas that will bring Goldie one step closer to drinking, and enjoying it.

St. Pete Beach, FL 2010

2010-06-03T23:12:00.001-04:00

If you guessed Florida, last week, you were right! We took our first vacation as a family of 6 to St. Pete Beach in Florida along the Gulf of Mexico. If we had forseen how much Goldie would adore the beach we wouldn't have put this off for so long. The water was a warm and beautiful, with no signs of the oil spill. I really hope they are spared, and someone gets that thing stopped!

It is amazing how 3 kids, ranging in age from 3 to 11, can be completely occupied for hours with nothing more than a small pail and shovel. And really, Goldie was the one who monopolized that toy. The older two found endless entertainment playing in the waves. So, this meant my husband and I could sit in one spot and actually have a conversation using complete sentences. Imagine! We were even able to talk to other adults that we met on the beach. Their children gravitated to us, so they had no choice. (The same thing happens at home with the neighbor kids. Before Hank was born, my husband once had someone tell him they saw "his son" playing outside. He had to break the news that the boy wasn't ours.)

The hardest part of our trip was getting through the airports. Tampa International gets a big thumbs up from me for being very family friendly! They put us through a seperate security line for families. Then, Southwest Airlines let us all preboard with Goldie. (in Pittsburgh only my husband was allowed to board with her, leaving me to struggle with the baby and stroller myself)

Then, the day before we came home reality reared its ugly head. I received two calls on my cell, on from my doctor and one from Goldie's speech therapy provider. I returned the call to my doctor, but decided to wait until we got home to deal with the other one. There's something that just isn't right about being put on hold while you're at the beach. The receptionist was so not impressed when I told her where we were.

Of course, it wouldn't be a vacation if we didn't bring home a virus. 5 of us are stuffy and hacking. Goldie has an ear infection and was refusing to drink or eat popsicles. Why does she do this? I really don't get it, because she was still eating.

I'm sure we were quite a sight in the parking lot at Target. Goldie strapped in her carseat with me trying to force her to drink a blue Icee. I once noticed a mom and dad trying to make their son eat Jello in a restaurant (they were getting kinda loud) and thought "how ridiculous, its not even good for you." That little extra chromosome has caused me to eat a lot of words.

Wordless Wednesday - Guess Where We've Been!

2010-05-26T23:17:00.000-04:00

Wordless Wednesday - Shhh

2010-05-19T00:01:00.001-04:00

Wordless Wednesday - Goldie's Tulips

2010-05-05T00:00:00.001-04:00

Gluten Free Chocolate Cake w/ Chickpeas

2010-05-03T22:29:00.009-04:00

While we don't follow a gluten free diet in our home, I know a lot of people need to. I have a favorite chocolate cake recipe that I have been making for years, just because we love it. It has a very moist and rich texture.

1 1/2 cups smeisweet chocolate chips

2 cups cooked chickpeas (garbanzo beans), drained and rinsed

4 eggs

1 cup sugar

1/2 tsp baking powder

1 Tb powdered sugar

In small bowl, melt chocolate in microwave oven, 2 minutes on medium power. Inblender or food processor, combine beans and eggs. Add sugar, baking powder and chocolate; process until smooth. Pour batter into non-stick 9-inch round cake pan. Bake at 350 degrees for 45 minutes or until knife inserted in center comes out clean. Cool. Sprinkle with powdered sugar.

It suggests serving it with raspberry sauce, but I just serve it plain.

Addicted to Swaddling

2010-05-02T22:11:00.000-04:00

What can make a baby go from this to this:

Swaddling. The dude is 4 months old and still rockin the baby straight jacket!
I think he'd like it if I carried him in the sling more, because its snug in there. But, it slows me down too much to have him in front of me when I'm trying to cook dinner or convince Goldie to use the potty. I've been wearing him in a back carry with my Ergo. Is he too young for that?

I'd also like to give credit for the first photo to one of my girls. Not sure who was nice enough to snap a picture of their brother at his finest.

The Morning After - Receiving Goldie's Diagnosis

2010-05-01T00:33:00.001-04:00

We just celebrated Goldie's 3rd birthday. She certainly got the better end of the birthday deal. While she was busy licking icing and tearing open gifts, I began climbing Mt. Transition. Instead of snow, its covered in paperwork. I still haven't reached the top.

Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it. I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.

During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.

I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.

During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.

If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.

The nurses kept reassuring me, telling me her Apgars were 8 & 9.

"Really?" the doctor said.

I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.

Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.

I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.

Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.

"We don't do that."

"Ok. Then come get me and I'll bring her to the nursery."

"But, there's other babies in there. No ones ever asked to do this before."

"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."

I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.

So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.

"I'm glad you asked to be here. Is you husband with you?" the doctor asked.

"No."

"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."

The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.

The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.

The next day we got our wish and were able to go home as a family.

It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.

Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.

"The results of the genetic testing came back and they show a triplication of the 21st chromosome."

After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.

"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."

"Oh, yeah."

More Occupational Therapy @ Home

2010-04-29T23:55:00.001-04:00

I'm always looking for ways to foster skills Goldie is working on, yet are FUN for her and her siblings. Goldie has fine motor delays caused by her low muscle tone and her low vision. The hypotonia and nystagmus are always collaborating on ways to trash her eye hand coordination. It's our job to help Goldie get one up on them.

In the March/April 2010 edition of Mothering magazine I read Shannon M. Medisky's fabulous article, "Your Indoor Playground" about creating indoor playspaces. Namely, vertical ones to save space. One, in particular, caught my eye. It was a standing lacing board.

I pitched the idea to my husband thinking he would be annoyed by the addition of one more thing to his honey-do list. Nah. He said it would be no big deal. He picked up the supplies for $6.42 and had it put together in about 20 minutes. It's nice and big so 2 or more kids can play at one time.

Goldie's OT has suggested using pipe cleaner with lacing activities instead of the typical laces. Goldie isn't sold on this idea. She sees her sisters using the string and that's what she wants. I play a game with her by standing on the opposite side of the board. We take turn pushing and pulling the large thread through the holes. For my older kids, they can use longer ribbon to make designs. (if their mother would dig it out of the craft cupboard for them)

I know not everyone wants something like this taking space in their living quarters. We've decided its part of the trade-off because we aren't sending Goldie to preschool. That means its our resposibility to provide educational and engaging activities for her.

If you'd like to read the article send me an email, then I can send you a digital copy of it!

And if you're looking for more OT @ home try here.

Goldie the Big Little Middle Sister

2010-04-27T23:33:00.000-04:00

Her sisters call her the Little Middle Sister, but she is also one of Hank's big sisters. I think she loves all her sisterly roles. Goldie is almost always nice to Hank. We just have to watch because she will try to take care of him beyond what she is capable of. And I say "almost always nice" because there was the one day she dumped a glass of cold water on his head while he was sleeping. (Baptism - check.) Hey, it works to get rid of the cat.

So here are some pics I took this month of our Goldie girl.

Those are Hank's binkies in her mouth. I just wash them when she puts them down. I figure if we make a big deal out of it, she will too.

Where can I get an accurate swallow study done?

2010-04-21T22:12:00.002-04:00

When I wrote that last post I was feeling the dread of dealing with the stomach flu over Easter. Well, that went away around 2 am when Goldie drank a cup of juice and kept it down. My husband decided that would be a good time to give me the whole story about what preceded the puking. He had Goldie with him, visiting the neighbor. She had a little glass and was playing with their water cooler. Filling the glass, trying to drink from it and spilling it all over the place. For most 3 year olds this would be good, clean fun. (Unlike yesterday when she came in covered in tractor grease...) The only problem is that Goldie can't drink thin liquids without choking. Which is what happened. She choked and coughed so hard that she threw up her dinner. It took over an hour to empty her stomach because of her diastasis recti.

WARNING: This next part talks about vomit and you may think its gross.

This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.

My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.

I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments. Any advice on how to get this done right?

And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing, despite all the medical loose ends waiting to be tied up.

Spring Break

2010-03-31T22:22:00.000-04:00

This isn't the post I had planned to write tonight. Goldie's launching into spring with a stomach virus. So while I'm disinfecting my house, you really should go read this. And lets hope I can keep my littlest girl hydrated and at home.

The Brady Bunch

2010-03-25T13:22:00.000-04:00

Goldie is all about the Brady Bunch. It started when I discovered that my girls had never met Mike and Carol, I immediately added Season 1 to our Netflix account. How could I know what a monster I was creating? Goldie, who would never watch anything other than Signing Time, sat for 1 1/2 hours watching the blended family bliss. The only word out of her mouth the entire time was "Alice". Everytime the credits roll she yells "Alice" and hits her head (ASL for "lettuce"). She began requesting "Alice" so much that I went out and bought her Season 1 and 2 for her birthday just so Netflix could have their DVD back. Finally, something we can all watch together.

Is it painfully obvious that we don't have cable or a dish?

And if you think Alice = lettuce is cute.
Bicycle = popsicle is almost as amusing.

Her sisters think the best part is when she starts dropping the "L" in Alice. Then you get A iss. So, its best to put her show on right away before she starts "swearing" at you!

Some problems are good to have

2010-03-24T22:55:00.000-04:00

The statement "That's a good problem to have." gets thrown around a lot here. Mostly by me and sometimes my husband. Its our way of looking at the glass as ~~half~~ ~~full~~ overflowing. Here's an example.

I love blogging. I have a lot to write about lately. I loathe typing with one hand. The baby is always in the other. This is a good problem to have. I am so smitten with this little guy. Why didn't someone tell me boys were so charming?

Even when he's telling Grandma to back off.

Even my girls are starting to get the meaning of what a good problem is.

Me: Everyone is talking me to at one time, so I can't understand any of you. You're talking and you're talking, Goldie is yelling at me and Hank is crying to be held.

8yo: That's because we all love you!

Me: Oh, yeah, good problem to have, huh.

Kids: ~~~~laughter~~~~

Wordless Wednesday - Charmed

2010-03-09T22:38:00.000-05:00

Hank Louis' Birth Story

2010-02-10T22:43:00.003-05:00

This is the fourth, and I'm expecting final, birth story I will write. As I was jotting down the details of Hank's arrival, my daughters were eagerly asking about their own births. I told them that, yes, I had wrote down each of their stories. I can imagine them comparing the stories to those of their own babies some day. (Except my oldest who says she is going to foster/adopt and would prefer not to be pregnant. Watching your mother puke for months on end must have that effect.) This raised some questions of my own. Will Hank, as a man, ever care to read this story? Will I be sharing it with his wife, who will then think I'm one of those natural childbirth freaks? I expect that Goldie will enjoy reading her story. Do I share the whole story with her? How will she feeling reading about the diagnosis and my reaction? Hopefully, I have a few years to think about it. I'm going to trust that the answers to these questions will reveal themselves to me when the time comes. Life has a way of preparing me for what comes next.

Enough touchy-feely stuff, its time for some statistics. Over 4 million babies are born each year in the United States. Hank was one of the 1% that was born outside of a hospital. Of that 1%, only 27.3% are born at a freestanding birth center. He is my only child to not be born at a hospital. I drove 45 minutes each to way to every prenatal visit and took a lot of flak from well meaning family for choosing to have a midwife attended birth. Even my husband was not completely sold on the idea and let everyone know it. He knew that the research supports my position that it would be safer, but still worried about the "what ifs". I could do another post just on the advantages of using a birth center and compare my experiences with 4 different birth attendants.

Now for the good stuff. To save time, I tried to stick to the important parts and didn't add a lot of detail.

Monday, December 28, 2009
3:00 I'm officially 41 weeks, so I need to have an ultrasound and a non-stress test. The ultrasound will measure the amniotic fluid and the NST will listen to the baby's heart and make sure he is moving around.
The ultrasound revealed a nuchal hand (the hand is presenting next to the head) and that he was face down. I wasn't too surprised, he was waving hello to the midwife during an internal at 38 weeks.

5:30 When we get home I fall in the driveway, twice. My husband orders me not to get up until he can help me.

8:30 I start having contractions. I pack Hank Sr's lunch for work that night and get the coffee pot set up for him. I assume the contractions will stop once I lay down. Just like they have for the last 3 weeks.

9:00 I lay down to watch tv with the girls

10:00 I try to get some sleep

11:00 The contractions are getting stronger and keep waking me up. I decide to go upstairs to wake Hank Sr up. It takes me 20 minutes to talk myself off of the couch. Between the fall and the labor, it hurts to move.

11:20 Hank Sr. is up pouring himself some coffee and I'm calling the midwife. Hank calls my mom and stepdad to come watch the girls.

11:45 We head out into a snowstorm to the Midwife Center. This is my 3rd baby born during a snowstorm. I kept asking Hank to slow down because I was afraid we would slide off the road and get stuck.

12:40 We arrived at The Midwife Center. Kathy was the midwife on call and Gretchen was our nurse. In the dark, I could see the lights of the Forest Room waiting for us. Kathy checked me and I was dilated 4cm, then Gretchen listened to the baby's heartbeat.

1:00 Hot tub anyone? I lowered myself into the warm jacuzzi tub and found instant relief. I hadn't been this comfortable in at least a month. Water is a better analgesic than anything I've ever gotten at a hospital. Gretchen brought me an english muffin with pb&j and a glass of gingerale. She continued to check the baby's heart tones, reminded me to drink, and asked if I needed the water warmed up. She also showed my husband how to apply counter-pressure to my back. During a contraction, the midwife asked my husband if I always this quiet when I was in labor. He made some smart remark, I laughed and told her yes. It's true, I was completely silent other than the sound of my breathing.

2:00 The contractions got much stronger and the baby moved down even further. We decided it was time to get out of the tub. I paced the room, leaning on my husband during contractions. I tried leaning on the birthing ball and began to feel some pressure. I wasn't ready to push, but started feeling antsy.

2:15 I asked Kathy to check me again. I had reached 7cm I knew from my previous births that if she broke my water I'd be holding my son within 20 minutes.

2:17 I decided that 41 weeks was long enough and asked the midwife to break my water. As I had anticipated, the contractions were overwhelming. Everyone kept reminding me how great I was doing and that it wouldn't be much longer. Laying on my side, I began pushing when I felt ready. I really wanted this to be over, so I didn't stop pushing until they reminded me to breathe. I know it didn't hurt this much with other babies.

2:32 I pulled Hank Louis up onto my chest and he raised his head to look at me. His daddy and I looked at each other with mutual joy and disbelief. In 15 minutes I went from 7 cm to holding my baby boy! Kathy explained that he was born with his hand next to his head, so I'd be a little sore this time.

We spent the next hour chatting while Hank nursed. I now know what the expression "born to breastfeed" really means. The cord stopped pulsing and his daddy got to cut it.
He weighed in at 7pounds 11oz and was 20 1/4" long. Gretchen cooked a breakfast of eggs and toast for us then left us to get some rest. Of course we couldn't sleep, but we did enjoy an nice snuggle, just the three of us. I've know that you can't always get what you want in life, but this time I did. Hank was blessed with a birth that went just as his mama had planned.

New Words

2010-02-05T22:41:00.000-05:00

After Hank was born, over 5 weeks ago, Goldie pretty much stopped talking. She resorted to whining and only using the words Mama and Dada. Because she needed to get our attention before she began whining at us.

This week she has been amazing me with the words. Not only is she saying more words, but her speech is getting clearer. This blog also serves as my record of her milestones, so I'm going to bore you with the details.

Goldie refolded some laundry for me and I asked her "What happened here?" She replied very carefully, "I did that."

At lunch we ate "am" (ham) Her shoes are "white"

Tonight she was dividing her time among several baby dolls. Then I noticed that she was making one of them wave his hand while she said "bye". A lot of her words sound like "bah", but it was cute to see her bending the baby's arm.

She gives her little brother fist bumps and was blowing raspberries in his face today. If he is crying and you don't get him settled down fast enough, Goldie will find a binky for him.

Another thing that I noticed, she stopped looking at her books after he arrived. She also wasn't very keen on letting me read to her. The last couple of days she has resumed emptying the bookshelf. I found her engrossed with her books, pointing at the pictures and signing to herself. Its so nice to see that she has made progress beyond what she was doing when Hank was born.

When I Wasn't Looking

2010-02-03T23:16:00.000-05:00

New babies are such a savory distraction from "life as usual". And while this mama was staring at new gray eyes and enjoying the aroma of milk breath her little girl learned some new tricks.

In the last two days I have found Goldie inhaling spices from opened jars and tonight we cleaned up a bottle of A1 sauce. It seems somebody has taught herself to unscrew lids.

While nursing Hank last week, I look over to see Goldie walking up the steps, unassisted. Her daddy swears she's been doing this for a while now.

The puzzle she insisted she wasn't ready for last week, it was completed with perfection today. Just for her OT.

When I ask "Who took Goldie's clothes off?" The answer is Goldie.

And when I say "Hey, thanks for putting Goldie's boots on." The response is "I didn't. She did."

But, I haven't missed everything. While I was watching my oldest spin around with Goldie hanging over her shoulder, I heard "I want down!"

Yesterday, while we were rolling playdough she said "Grace", her big sister's name, for the first time.

And when I look at this picture, Im reminded that "3" is just around the next bend.

Wordless Wednesday - Hank's First Field Trip

2010-02-03T03:01:00.000-05:00

One Word

2010-02-02T09:03:00.000-05:00

Saw this at My Cool Family and thought it looked like fun. And not a lot of typing. I'm one handed. Again.

USING ONLY ONE WORD
Not as easy as you might think! Now forward, change the answers to suit you and pass it on. It's really hard to only use one word answers. Be sure to send back to the person you received it from!

Where is your cell phone? counter
Significant other? dedicated

Your hair? brown

Your mother? selfless
Your father? selfish

Your favorite thing? harmony
Your dream last night? none

Your favorite drink? Cafe Vienna
What room are you in? Living

Your hobby? Laundry
Your fear? Grief

Where do you want to be in 6 years? Wherever
Where were you last night? Here

Something that you aren't? Extrovert
Muffins? Blueberry

Wish list item? Bra
Last thing you did? Coffee

What are you wearing? pajamas
TV? NBC

Your pets? Variety
Friends? Dependable

Your life? Lovely
Your mood? Ambitious

Missing someone? yes
Drinking? tea

Your car? van
Something you're not wearing? Contacts

Your favorite store? Target
Favorite color? yellow

When is the last time you cried? Wednesday
Who will resend this? Yes

Where do you go to over and over? Vermont
My favorite place to eat? Mom's

Favorite place I'd like to be at right now? Friends
Four people I think will respond ?

Tag you are it! Copy and fill in your own answers.

It's 2010 People!!

2010-01-31T21:46:00.000-05:00

I can't recall if I've mentioned, on here, that I volunteer helping breastfeeding moms ~~when I'm supposed to be cooking dinner~~ in my spare time. I may only get one or two calls a month. Unless, that month has a major holiday or I have just given birth. Then my phone will ring nonstop and I'll have to order my children not to answer any number they don't recognize. (Please don't think I'm horrible, its just that it took twice as long to convince Hank that its bedtime than it did to write this paragraph. And I can hear he still doesn't believe me ;) Goldie blessed me by going to bed at 8, which means she'll wake up screaming any second. See, I need every minute in my day.)

Yesterday I decided to answer a call that I had already ignored once. Well, I must have taken too long navigating the farm animals and Zhu Zhu pets because I missed it again. So, I did what I never do, and called this unknown person to see what they needed.

It was indeed a breastfeeding help call. A grandmother calling for her daughter. She began describing a baby that, although full term, had medical complications and was transported to a NICU in a larger city. She seemed unsure of what to tell me or where to even begin. The mother had an emergency c-section and the nurses had refused to show her how to pump or get a lactation consultant to see her. That's when my DS mommy radar went up.

Me "I hope you don't mind me asking, but does the baby have a suspected diagnosis. Its unusual for a mother to not receive help after several requests."

Baby's Grandma "Well, yes he does."

Me "Its okay, I understand, I have a daughter with Down syndrome"

BG "Oh, that's what they think he has. You really do understand. I'm so glad I called you."

Do you get what happened to her daughter? The nurses decided that because her baby has DS "he won't be able to breastfeed anyway" or "it won't matter". Then again maybe they were too busy feeling sorry for her and didn't want to "burden" her with pumping for her baby. This story is very familiar to me. I have a friend who experienced the same thing almost 4 years ago when her daughter was born. It was a different hospital in a different state, but the same attitudes. That talk a friend and I gave last year, we need to keep giving it.

IEP Evaluations

2010-01-28T12:15:00.001-05:00

I thought I should take a brake from my babymoon for a quick update. The last 4 weeks have been fabulous. Hank is such a sweet and, dare I say, easy baby. My husband and I both agree that everything has just been way too easy this time around. For example, baby Hank was nursing within 30 minutes of his birth. He knew exactly what to do. And when to do it. No pumping, no finger feeder, no syringes. My first two were also very sleepy babies and I had a hard time keeping them awake to eat. Not this guy. The best part is that we know to appreciate all these little things. Part of me keeps waiting for his therapists to walk through the door. I keep reminding myself that our new arrival didn't come with an IFSP. Ha!

Speeking of Early Intervention Goldie's evals for her IEP are today. My husband was supposed to be home, but he has a new schedule and has to work. So, Grandma is watching the big girls while I take Goldie and Hank. And to make it even more fun, our appointment is the same as Goldie's naptime. She's asleep right now and she refused to eat lunch. This is the problem with scheduling things so far in advance.

I tried to get out of it by canceling last week. Let me explain why, Hank Sr. and I have been talking for the last couple months about what we want for Goldie next year. This included observing an inclusion preschool classroom. I was less than impressed. After discussing our various options, we have decided not to send Goldie to preschool next year. Originally, we were told that if we waited until September to send her that they would not provide her services and we would have to get them privately. Soooo, I thought if we weren't sending her to pre-k she wouldn't get services from the county. But, I got a phone call yesterday saying they would still provide. Funny how things change. When I gave my husband the new information he said "It feels like were dealing on a new car."

Good things come to those who wait!

2010-01-03T12:29:00.001-05:00

Here he is!

Baby Hank arrived on Dec 29th at 2:32 AM. He weighed 7lbs 11oz and is 20 1/4" long. Not the peanut we thought he was. Everything went as planned and he is doing fabulous. His big sisters are always holding him and Goldie warms up a little more to him each day. She doesn't seem very jealous, just a little hesitant. I'm taking my job of resting very seriously and soaking up every minute with my 4th baby that I can!

Christmas pics

2009-12-27T09:16:00.001-05:00

These are my favorites from the day. Daddy showing Goldie how to use her MP3 player.

She's got it!

Early Childhood Inclusion

2009-12-22T16:57:00.000-05:00

This newsletter was in my inbox today and I thought I would share it. I have to be honest though, I haven't taken the time to read the whole thing. I did enjoy the article on page 6 about Annie. I've seen the DVD she was in at an Early Intervention support group where the topic was routines-based Early Intervention. I found it very reassuring to see how much of what we do everyday is beneficial to our children.

Right now...

2009-12-20T09:55:00.001-05:00

this is as close as Goldie can get to her little brother.

Giving credit where credit is due

2009-12-18T22:23:00.000-05:00

Goldie had her quarterly eval this week. I have to say it was fabulous! She has made so much progress in the last 3 months. She now knows over 100 signs and her speech is increasing slowly and steadily. Her fine motor skills have taken off and she is completing puzzles on her own along with beginning to draw. I could go on and on!

So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"

Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.

Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!

Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?

Nasonex

2009-12-14T22:26:00.000-05:00

10 days ago I posted about Goldie still not being able to breathe, here. I just wanted to update that things are 100% better. The antibiotics weren't working so her ped had us stop them. Then she asked if we wanted to try Nasonex or Singulair. Nasonex is a nasal spray to reduce inflamation and Singulair would be an oral medication that also reduces inflamation. I opted for the nasal spray because I thought it would be best to treat just the problem area. Wow, what a difference it has made. After less than a week, she breathes quietly through her nose with no congestion. I don't know how long we'll have to keep using it, but for now I'm not messing with a good thing. Its only one spray per day and you don't build up a tolerance to it like OTC nasal sprays.

On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!

Wordless Wednesday _ Christmas Artwork

2009-12-09T13:22:00.001-05:00

The Never Ending Search for Sleep

2009-12-04T22:29:00.000-05:00

Its been 3 months since Goldie had her adenoids and tonsils out. Long story short, her sleep is worse than ever.

Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.

Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!

I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?

The Picture

2009-11-30T15:20:00.000-05:00

At the end of this post,I mentioned a picture that was hanging in the entrance hall of my midwife's office. Well, I found it online here, so I can share it with all of you. You'll have to select the 4th picture at the top and then the 3rd one on the right. This was the first time I read the text that goes with it. I'm so busy trying to get 3 kids in and out with me that I never stop.

Tired of turkey? How 'bout some beef!

2009-11-29T22:35:00.000-05:00

After two days of turkey, Hank and I were so ready to go pick up our beef for the year. We took the plunge this spring and bought a cow. It's been boarding at the neighbor's with his 3 cows and Hank has been going over to feed them all summer and fall. Mid November they went to the butcher and Hank picked ours up on Friday.

In the past we bought our beef from the other farm next door at a reduced price in exchange for Hank's hard work bailing hay and fixing farm equipment. This is how we live creatively on one income. Since he started his new job last fall it was very hard for him to find the time or energy to help out at the farm. Then there was the problem that they couldn't sell us the amount of meat we needed. Our family is growing and Goldie can already eat as much steak as her sisters! We felt getting our own cow was the next best option.

It is important to us that our kids know where their food comes from and that it be as healthy as possible. I'll guess that you've already heard about the benefits of pasture raised animals or grass fed beef. It seems to be getting a lot of press lately. Our cows were rotated between two pastures, given hay that was grown on the same plot of land, and also fed a little corn to fatten them up. The corn came from the farm next door, so no antibiotics were added. Do we even want to venture a guess as to what this meat would cost in a store?

Now for the numbers. I used to work in accounting, so this is my favorite part.
purchase price of cow $314
price of feed $95
kill/freeze fee $60
butcher fee $265
Total $734
The hanging weight of the cow was 528 pounds which yielded us about 300 pounds of beef. Our cost per pound ends up at $2.45!

Ground beef at the grocery store here is about $2.99/lb. But, my freezer is not just full of ground beef, we have steaks, roasts, and stew meat all at that price. I'm really hoping this puts a dent in our grocery bill. Since I got pregnant and Goldie stopped existing on breastmilk, its been out of control. Not to mention, nothing makes a nesting pregnant woman happier than a full freezer! Except, having fewer groceries to carry home from the store.

36 Weeks!

2009-11-23T22:44:00.000-05:00

I had my 36 week midwife appointment today. It felt so wierd to go back, since I was just there 5 days ago. But, weekly visits it is from here on out!

I measured 35 cm. Which is just great! He doesn't seem to be a very big baby and they estimate he'll be about 6 1/2 pounds, no more than 7. I can't wait to see if they're right. I know the u/s I had with Goldie wasn't very accurate. I was offered an u/s today, but declined. My neighbor is going through a complicated pregnancy right now, with weekly ultrasounds and visits to specialists. I see the emotional roller coaster this has put them on and I want no part of it. I don't need any help finding things to worry about.

The midwife also mentioned that there was a RSV outbreak at the hospital they use. (I'm planning on delivering at a birth center.) Healthy newborns from the nursery were testing infected and they had to stop admitting mothers to labor and delivery. I relayed this story to my husband who still thinks a hospital birth may be safer. It just shows that anything can happen regardless of how well thought out and researched our choices are.

I've also been thinking a lot lately about trusting my instincts and intuition with this pregnancy. I'm finding it harder since Goldie was born. My question is this: Did you "know" (in your gut, not medically speaking) your baby was going to have DS or have a feeling that something wasn't right when you were pregnant?

What do you do all day?

2009-11-22T09:53:00.000-05:00

As part of my baby preparations, I wrote down Goldie's routine for the day. My mom will be taking care of her and I want to make it as easy on both of them as possible. Plus, I can go into labor with a clear mind that Goldie's needs are being met. It may also come in handy if anyone stops by to help out after the baby is born.

I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...

Goldie’s Schedule

6:30-8:00 Good Morning!

Potty -Right after she wakes up Goldie pees on the potty. She is usually dry in the morning.

Breakfast Goldie likes: - toast w/ raspberry jam or peanut butter
-Waffles w/ maple syrup to dip them in
-banana
-cereal w/ soy milk (feeds herself so use 2 bibs and a placemat)
- NO cheese, milk, or yogurt
Drink - 50/50 juice (white grape or oj) and water = 8 oz w/ 5 tsp Thick-It
- add 4 drops of Vitamin D (only added to morning drink)
Ginkgo - give .50 ml in the morning (not afternoon or evening)

Get dressed, puts her pajamas away in drawer

Playtime - read books, do puzzles, play babies, watch Signing Time, helps unload dishwasher and puts her dishes away.

10:00 Potty time and snack. Encourage Goldie to drink.

Lunch - 1 orange probiotic and ½ tsp Children’s DHA
- both are on door of refrigerator, use medicine syringe for DHA
-Goldie likes: leftovers from dinner, pb&j, fruit, salad, canned pasta, chicken, salty foods, tuna, and soup
Potty

Nap - Goldie is ready for a nap by 1:00.Sometimes sooner if she was up early. She likes to rock in the recliner and listen to her GloWorm (while I sing along). Sometimes we lay on my bed and I sing to her.

Potty - Goldie usually poops after her afternoon nap. Be patient this can take a long time. It’s a good time to read some books.

So there you have it, a peak at the day in the life of Goldie!

I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!

Measuring Up

2009-11-20T21:55:00.000-05:00

We've been humming right along the last couple weeks. Putting food in the freezer for next month and going on a couple field trips. Like these replicas of the Nina and the Pinta we toured last week.

I've been feeling pretty good, just a little uncomfortable by the end of the day. Which is to be expected at this point,especially with a 2 year old. I have no problems gaining weight, 5 lbs in 3 weeks. I think I'm as big now as when I delivered Goldie. So, I was not expecting to hear that my measurements hadn't changed since my last midwife appt. I measured 33 cm 3 weeks ago and again at 35 weeks. I'm worried about the lack of change more than anything. It is in the normal range to be 2cm smaller or bigger than the number of weeks.

I have to admit that I was pretty freaked out when we left. And into the next day. This wouldn't have bothered me 3 years ago. I should say didn't bother me. I measured small when I was carrying Goldie. Looking back it was the only concrete sign that something was up with her. But, now I know so much more. I'm not worried that this baby could have DS. That I can deal with. I am worried that he's not getting the nutrition he needs to grow. What if something is wrong with the cord or the placenta? I just want to get him here safe and sound.

The good news, he is moving almost constantly and his heart rate was good. The previous measurement could have been wrong and he has also changed position and is sitting lower than before. For now I'm making sure I drink enough water and taking it easy. I go back on Monday and if there is still no change I'll go in for an ultrasound. Until then, prayers are always welcome.

Wordless Wednesday - OT

2009-11-04T04:52:00.000-05:00

Halloween 2009

2009-11-02T22:43:00.000-05:00

Here is the best picture I could get. Goldie wanted nothing to do with standing still, she was ready to go! Hank and his friend use a tractor drive the kids around with a trailer and some hay bales. I think that was Goldie's favorite part. After getting out for the first 5 houses she was done and I brought her home. Despite all the candy, all 3 girls were asleep by 9:30!

I wanted to update since my last post. Goldie's ped doesn't have the H1N1 shot. My PCP only had 4 left when I called and Goldie is not their patient so I couldn't get one for her. The health department said they don't know of anyone in this part of the state that has them and I was very lucky to get one myself.

I did it.

2009-10-31T22:25:00.000-04:00

I got the H1N1 vaccine yesterday. After many hours of research and debating in my head I decided to just get the shot. My PCP had them and they were mercury free so I went yesterday morning.

Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?

Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?

I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.

I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!

More pregnancy stuff

2009-10-29T21:51:00.000-04:00

Thanks to everyone who left such reassuring comments on my Pregnancy and PPD post. It's nice to reminded that what I'm feeling is normal for the situation and that everything does work out in the end.

I also wanted to mention that I don't dwell on the serious stuff most of the time. Goldie doesn't allow me any time for that! I am really looking forward to this little guy's birth in December. It will be our first out of hospital birth. There is something I really enjoy about labor (yes, really) and thought this would be the ideal way to give birth. I will not miss dealing with OB's who agree to a birth plan and then change their mind or nurses who can't fathom why I don't want an epidural and have the nerve to tell me "its not fair" when my baby is born before the woman in the next room's. Or staying home until the last possible minute. And don't get me started on that automatic blood pressure cuff. Since we're aware of the various complications that can arise, I am always praying that everything goes well and our baby gets the birth he needs.

Another thing I love about the midwife's office: When you walk in the door their is a series of posters on the wall. I didn't pay much attention at first. Then, I noticed that the first one is of a mother with her baby in a sling. I had to do a double take because that baby had some very familiar DNA! My heart just got all warm when I saw that and I knew I had made the right choice.

Can you imagine that hanging in an OB's office? Gasp

Wordless Wednesday - Children's Museum

2009-10-28T20:16:00.000-04:00

Baby Update Week 32 and Post Partum Depression

2009-10-27T21:25:00.000-04:00

I know some of you have been wanting a pregnancy update, so here it is...

I'm happy to say I'm feeling really good and everything has been wonderfully uneventful thus far. I'm measuring exactly where I should. (This was an issue when I was carrying Goldie because she was so small.) I think chasing a 2 year old around is an excellent way to stay in shape and prepare your body for childbirth! The midwife did let me know I should be drinking more water. Duh. I spend all day obsessing over how many ounces Goldie has had to drink that I completely forget about myself.

We also discussed the emotional side of pregnancy. Specifically when you already have a child with a diagnosis. I lost something when Goldie was born. My peace of mind. Before, I assumed I would have healthy pregnancies and typical babies. Now, I am very aware of the myriad of things that could happen to change our lives. I no longer feel that "it won't happen to me" because it has. As God would have it, the midwife I saw that day also has a child with special needs. It was so nice to talk to someone who gets all these feelings. She also brought up some things I hadn't thought of. For instance, did you know some mothers in my situation have a hard time pushing. They feel as long as they are still pregnant the baby is perfect and are afraid of that changing once the baby is born.

I also asked about Post Partum Depression. I dealt with this after Goldie was born and would like to be more proactive this time. Again, she understood and suggested speaking to a psychologist before the birth and taking a childbirth class that deals with overcoming traumatic birth experiences. Not that either of think her birth was traumatic, but it certainly left me with some guilt and hurt feelings.

I don't think I've ever blogged about the PPD I had after Goldie was born. I denied it for a long time because I thought it would mean I wasn't happy with her. I also wasn't really depressed. I didn't sit around in my pajamas all the time. I did everything I was supposed to do in a day. But, I was very angry. All the time. I would yell at my kids over little things and then feel guilty, but do it all again the next day. I also had nightmares and irrational fears. There was a recurring dream that Goldie was missing and I couldn't find her. I tried some natural remedies, like taking Omega-3s. But they didn't help and some actually made the dreams worse. Finally, when Goldie was 8 months old I went to my OB and got a prescription for Zoloft. It helped tremendously and I stayed on it for 9 months and then slowly stopped weaned myself off of it.

Why am I worried that this will happen again? I had the dream again. Only it wasn't Goldie that was missing, but our new baby. It was reassuring to wake up and know that I'm still pregnant. I'm also nervous about having a typical baby. I worry that it will take me back to when Goldie was a baby and I will mourn, again, for the experiences we didn't have. Or even that I will miss the things about her that he doesn't have. I loved that chubby neck and the hugs that melt into you like butter.

I hope that all this worrying is for nothing. These thoughts may all disappear once he is here and in my arms. I imagine we will be so happy with him that there won't be any looking back.

Fall Pictures

2009-10-26T20:15:00.000-04:00

My 7 yo grabbed Goldie and the camera and took these pictures. She is so thoughtful and know how I love to take fall pictures of them. I think they turned out much better than the ones I tried to take of the 3 of them.

Self portrait of the photographer and her subject.

Who Stole the Apple from the Apple Bag?

2009-10-25T21:58:00.000-04:00

Goldie!

She snagged this right out of the bag on the counter. I took it back long enough to wash it. I figured it would keep her busy for about 15 seconds and was a little doubtful that she had the jaw strength to bite off a piece. I buy the very crunchiest apples I can find. She, of course, showed me that even the crunchiest apple is no match for her!

This has already proved to be an easy snack to give her on the go. I'm notorious for not remembering to bring snacks when we go out. I blame it all on breastfeeding. I always had food on hand when they were babies and it got me into a bad habit of not packing snacks. Anyway, after we went on a nice, long hayride this week I was able to buy Goldie an apple to eat. How convenient? Too bad I can't do that when her drink runs out! (I've been caught without "Think-It" more than once this week.)

Transition - The First Meeting

2009-10-16T22:45:00.001-04:00

This week was the first meeting in Goldie's transition from home based to school based Early Intervention services. I still remember the very first IFSP meeting. I think she was only 5 weeks old. There was a woman named Brenda asking me what my goals for Goldie were during the first year. Who ever thought I would be coming up with goals for our new baby? All I wanted to do was feed her and take a nap. Somehow, thought started forming about what I wanted her immediate future to look like. I went back through 8 years of being a mom and watching my other babies grow and decided that is what we would aim for. One thing I specifically remember telling them was I wanted Goldie to eat real food. Not baby food, just like my other kids did. Brenda looked up at me to see if I was serious. Then she said " Well, we'll have to make sure she can do it safely." Goldie did accomplish this goal. I had to compromise a little along the way, but not much. The lesson I learned is that you can't be afraid to aim high. If I had been wrong it would have been ok. We would have given Goldie the support she needed and adjusted our expectations. But, we should always give her the chance to succeed.

Now that I've gotten way off track from my original topic... I admit I've been pretty worried about how this transition will go. You just get used to dealing with one system and now its time to move on to another. I've also never liked the idea that my daughter is part of "the system". I've always enjoyed my parental autonomy and really resent anything that infringes on it. I was laying in bed thinking about how I could be at peace with this process when I realized the obvious. Hank and I are still her parents, we are still in charge. We have the final say in what services our daughter receives. If we don't like what Early Intervention has to offer, we have choices. We can even choose to take her to private therapists and pay for prek ourselves. We are not at the mercy of the system.

I woke up in a great mood the day of the meeting. I made a list of all Goldie's strengths and the things she is still learning to do. (Good thing, because I was asked for these) I also wrote down some questions. Hank was watching the girls, so I went alone. This is fine because he tends to be too nice to people. He's great at compromise and I'm great at sticking to my guns! The meeting consisted of myself, Goldie's current SC, and a man whose title was Early Intervention Service Coordinator. I guess he's going to be the new SC.

It went about as I expected and he wasn't able to answer all my questions. I give him props for admitting that and not just giving me bad information. He asked what we had in mind for Goldie. I told him, "We decided that the Fall after she turns 3 would like to enroll her in a typical preschool setting." That was followed by him trying to convince me to enroll her in the special ed pre-k in March. I simply repeated "We won't be sending her anywhere until the Fall after she turns 3." He realized rather quickly I wouldn't be changing my mind. I did explain our reasoning (new baby), but he just raised his eyebrows and went back to writing. Whatever. I guess he took it personally.

Next came the question of how will Goldie receive services if she is not in pre-k or daycare. He didn't know and told me to ask at her eval in January. Wrote that ? down. I also have to ask how they will implement her oral motor therapy in the classroom.

Then we talked about typical pre-k options. Not far from us is a typical preschool that has slots for students with IEPs and has staff from EI in the classroom in addition to their own teachers. I had already heard about this option and we are very interested in this for Goldie. My big question is how do I make sure she gets one of those slots? I was told "We just put her in there" Yeah, right. I don't believe that for a second.

Finally, came the paperwork. I was asked to sign a paper allowing them to bill Medicaid for Goldie's services. I asked if this would cause a problem if we pursued private therapy. He said "no, well it shouldn't, unless their billed on the same day for multiple services." I said I would bring that form back later. I could have signed "No" and her services would still be free, but I wanted more time to think about it.

Overall, I wasn't impressed. I had some big safety issues with the building. Goldie could have easily walked out the front door. (I know people who work there that have found kids wandering the building) There was no interest in Goldie as a member of our family. There was a brief explanation of why inclusion is a great idea, but segregation (my word, not his) of children with special needs is sometimes necessary. Then it was my turn to make faces.

The best part of the day though - while I was gone Hank decided to play outside with the chainsaw so the girls were on Goldie duty. They got her to sleep for a nap, fed her a snack, and took her to the potty. Where she did number 1 & 2! (Now that's a whole post for later.)

Transition - Getting Ready

2009-10-10T21:04:00.000-04:00

Next week is the first meeting in the transition process for Goldie. She won't be 3 until March and right in the middle of now and then I'll be having a baby. I've been dreading this since our first IFSP meeting. Honestly, I would like to say "no thank-you" and go back to having a "normal" life where I don't have to deal with THE SYSTEM. I think part of the reason I find this so daunting is that none of my kids went to preschool. I was the lone mom in my circle of friends who didn't believe in preschool. I do believe most parents provide all the enrichment any preschooler needs. They have many years of school ahead of them, why let them get burnt out before kindergarten? Childhood is short and I want my girls to have as much of it as possible, TOGETHER. The day will come when they don't share a roof over their heads, let alone a bedroom and these years will be what bonds them for life.

I was all set to send Goldie off to school when she turned 3, sort of. Then, sometime in the last year I started thinking that everything I believed was best for my other children could still be what's best for Goldie. Does she deserve less time chasing chickens and making blanket forts because she has a disability? Is there anything preschool will teach her that I or her siblings can't?

Of course, she does have different needs than her sisters. Can I meet them? Yes. But, I know when I need help. Hank and I talked and (as of now, plans may change as we get more information) we will not be sending Goldie to pre-k in March. Our plan is to send her to a typical pre-k, twice a week, in the fall, following her 3rd birthday. I don't think its wise to send her off to school less than 12 weeks after getting a new sibling. I know from experience that can be a rough time for the youngest.

This plan means we have to decide how Goldie will get her speech and OT services. I thought I had that figured out, until the Service Coordinator was telling me the laws changed back in January. I've been told we can bring her to the school, just for her services. I've also been told the state doesn't allow any one-on-one therapies. Her current OT and ST both feel that all of her needs will not be met by the school district and that she would need private therapy in addition to what the school provides. Fortunately, a pediatric therapy center opened up a mile and a half from our house. Still, my head is swimming with the different choices and if they are even choices we will have. I hope to have some answers next week and a clearer picture of what will happen when she turns 3.

On another note, Goldie met an OT goal this week. The one were she learns to remove her pants. She even went above and beyond and took off her diaper. Sorry, no picture! But, here's another cute one I had to share.

I should add that is a water baby in the sling. It is much heavier than our other baby dolls and is a sneaky way to help Goldie with her arm strength!

My Favorite Thing

2009-10-09T22:33:00.000-04:00

Down Syndrome New Mama posed the question "what is your favorite thing about DS?"

It would have to be the way I feel every time Goldie smiles at me or laughs along with me. I get a feeling when she smiles at me that I don't get with my other kids (shh, don't tell). Her pure happiness and unconditional love are contagious. She can change my mood in an instant. Its like looking up and seeing a rainbow. You never get tired of it. Even if you've seen one, you want to see another.

Electric fences

2009-10-08T22:08:00.000-04:00

For 3, maybe 4, months a year our property borders an electric fence. It is about 8 feet from our chickens and the garden. It is so beautiful to get up and have coffee while watching a newborn calf nurse from his mother. I love it here. My children are growing up in the same house I did and playing in the same yard I did. Hank grew up on a small farm, so this property was a good fit for him.

I slowly feel we are becoming our own small farm. There is always something that needs done. Like yesterday. I took Goldie outside to swing. While we were out I noticed the walnuts on the ground needed to be picked up so Hank could mow the grass. I walked over to get a wheelbarrow to put them in. While getting the wheelbarrow I see that the chickens need water. I take the bucket back to the house. While I'm dunking it in the rain barrel I turn to check on Goldie. She is headed toward the cow pasture. Despite my running and screaming, she beat me to it. By a mile. I felt like I was in a race against the electric current. This time we won. The fence wasn't working. (FYI, they don't deliver a continuous shock, it travels around the fence, which is very long. I've been shocked and it hurts, but it isn't dangerous, kwim?) The neighbor called later to see if everything was ok. She was outside and heard me yelling. I told her Goldie was fine, but I was very sore and would be spending the afternoon on the couch. I'm 29 weeks pg, not a good time to start sprinting.

I really believe inclusion begins at home, but I struggle with including Goldie and keeping ~~my sanity~~ her safe. She usually stands and watches the chickens while I get the water. Hank taught her to pull grass and feed it to them. This is very cute, but she's gotten her fingers pecked already.

Overwhelmed No More

2009-10-07T21:38:00.000-04:00

I've spent the last week trying to get a handle on our home and my time. Over the last year I've felt increasingly overwhelmed by the day-to-day stuff that needs done around here. So, on Saturday I handed over a volunteer job to someone better able to handle it. This is something I should have done a looong time ago. Like, after Goldie was born.

I have to come clean and admit thinking to myself after she was born, "I'm not going to change. I'm not going to let Down syndrome take over my life. I'm still going to do everything I did before. I won't become obsessed with it." Its taken me 2 1/2 years to admit that I have changed, my life and interests have changed and its not as bad as I thought it would be. Down syndrome didn't take over my life, but my love for Goldie has. She demands more of my time than I anticipated in the beginning, but who can think of a better way to spend their time.

The volunteer work I did was bookkeeping. Which is best done without the help of a 2 year old. I tried waiting until she was asleep, but she would wake up constantly and I still didn't get anything done. The bookkeeping kept getting further behind and my guilt kept growing. I put off doing crafts and projects around the house because I felt like I should be getting caught up on the work I was already committed to. I ended up getting nothing done for myself, my family, or the charity. Which led to more guilt.

Now that I've relinquished my duties, my time is once again my own. Like Hank said, "Now all you have to do is take care of the kids." Yep, that's it. HA! HA! But really, I've been planning field trips for them and organizing their rooms. I'm good at organizing when I'm pregnant!

Totally unrelated to this post, but when I was looking at my calendar, I saw that Goldie's first transition meeting is next week. Eeek! I don't feel ready for this process.

Maya Wrap Sling Before & After

2009-09-30T22:33:00.001-04:00

Before

After

I just didn't think it would be right to wear our baby boy in a pink sling! You can also see where the fabric had really faded. I thought brown would be a good fool proof color to dye it. While I had a big pot 'o dye on my stove I dyed him a couple shirts and a pair of socks. Then the girls had a great time tie-dying their socks with what was left.

Measuring Growth

2009-09-27T10:00:00.000-04:00

I take Goldie for her well checks, they measure her and plot it on her chart. I write the number down and plot it on my charts for her at home. Sounds simple enough. Apparently not.

Last September (18 mos) Goldie measured 32" (81cm). In March at her 2 yr appt she still measured 32". The ped noted that they must have measured wrong at the 18 mo appt because she jumped up on the curve and was now back where she should be. As spring turned to summer and we had a lot of appointments lined up for Goldie there were many more measurements taken. Always 32". Just for kicks, I measured her myself one day. Lying down, like at her 18 mo appt. I got 34 1/2" (87.5cm).

Mel commented on my last post that maybe Goldie was having a growth spurt. When she felt heavier the other morning and her pj's looked shorter I measured her again. I laid her on the hard floor with her head against the wall. I got 35 1/2" or 90cm. I waited a couple days and measured once more. Still 35 1/2".

We were having trouble getting Goldie's last blood work results from the lab, so I had a call in the ped. I asked about measuring growth when I spoke with her. I thought maybe Goldie's low tone made her shorter when she stood up. She explained that your joints compress when you stand up and they have had children "shrink" when they began measuring them standing up. Glad I asked! I gave her the measurement I had for Goldie and she wrote it in her chart.

Speaking of charts, what do you use? We use the DS charts and the WHO charts. WHO charts are based on the growth patterns of breastfed children. The reasoning for not just using the DS charts are that if they are based on children who may have less than optimal growth for any variety of reasons then they may not show a slow in growth as obviously as the WHO charts. If we want Goldie to grow as typically as possible then we need to compare her growth to a larger population of children. I forget where I first read about this theory, but it made sense to me.

New Routines

2009-09-18T16:12:00.000-04:00

Thank-you to everyone who has been thinking about Goldie! She is doing much better. Actually, I think she's trying to make up for lost time (and weight) by eating non-stop. I still have to remind her to drink most of the time.

The only time she stops eating is to sleep.

I've spent the last week getting the big girls into their new school routine. I am homeschooling all of them again. Fortunately, the oldest takes online classes through a cyber school, so I only have to teach her math. We have been working very hard to make up the days missed while I was taking care of Goldie. With the baby due in December this is not the year to fall behind!

Mini Me's first day of school!

T & A Setback

2009-09-05T22:13:00.000-04:00

I'm exhausted but wanted to update on Goldie's recovery. Thursday morning she wouldn't eat or drink and was very tired. After lunch when I tried to take her temp she had a nose bleed, so that sent us straight to the ER. They determined the bleeding was stopped, but she was transported to Children's Hospital for dehydration. After some convincing on my part, they admitted her. She was soooo lethargic I don't know why they even considered sending us home. We stayed until this evening. I was very hesitant to bring her home because she was not drinking reliably. Although, she was eating and running around. She's done a little eating and drinking since we got home. I wasn't able to get her new pain meds because all the pharmacies are closed on Saturday nights. (One of the reasons I wanted to stay until tomorrow am.) I'm ready for bed, but Goldie is still up. Why don't any of these meds make her tired???

Honey, We Have a Problem

2009-09-02T22:00:00.000-04:00

That what I heard when Hank was upstairs putting up the girl's "new" bunk beds. Curious, I go up to see what's going on. He quietly takes my hand and points into our bedroom,at the ceiling. There is a HOLE and BEES are flying into the room. That was definitely not there this morning when I got a shower. While I called exterminators, he set some foggers off in the attic and sprayed some bee killer in the hole. Of course he put duct tape over it when he was done. What man could pass up a chance to use duct tape. That should hold them back until Friday when the exterminators come. I'll be sleeping on the couch in the meantime. Hank assures me its safe to sleep in our room because bees sleep at night. That's nice to know, I'll still be on the couch.

Goldie is doing ok. Her appetite is pretty good, but she's still not crazy about drinking anything. Her sleep has been horrible. She wakes up in pain. I give her the Tylenol w/ codeine. She hates it and puts up a huge fight. Then she's up for a couple hours. So, tonight we're going to try the regular Tylenol. She doesn't like it, but tolerates it somewhat better. Her sleep schedule is off and she takes longer naps during the day. Last night I couldn't get her to bed until almost 12. Then she was up by 5. Right now, she's laying on the couch kissing her baby. Maybe they're ready for bed.

Post surgery update

2009-08-30T21:32:00.000-04:00

Goldie's surgery went well. Her surgeon is very thorough and even had an ICU room reserved for her afterwards. This was a huge precaution considering Goldie has never been hospitalized or had any previous surgeries. However, this caused some confusion as to where we were supposed to go while she was in recovery. By the time her ICU nurse called the waiting room Goldie was awake and really ticked off. I could hear her screaming in the background!

We spent the night for observation and so Goldie could get IV fluids. The next morning we were given the option of moving to a new room and staying to see how Goldie was going to eat and drink or going home. At that point she was eating jello and asking for her drink so I thought she would do even better at home. I thought.

Now I'm rethinking, because it's been a constant battle to get anything in her. At least until Daddy came home from work. She insisted on eating pizza (no crusts) with him and he got her to eat some soup. Then her sister got her to eat some Jello. I think she associates me with the yucky medicine and doesn't want anything I have to offer? The top shelf of our fridge is full of half-eaten foods I've been offering her. I even leave food around the house, hoping she'll find it and start eating. My end table is now covered in some sticky smoothie my mom brought and I keep stepping on Jello. At this point she is still having a normal amount of wet diapers, so we'll see what tomorrow brings.

As far as pain goes, that seems to fluctuate throughout the day. She was miserable all afternoon, but had a really great evening. We'll just keep taking it one day at a time.

Before T & A Surgery

2009-08-26T21:13:00.000-04:00

Goldie is having her tonsils and adenoids removed on Friday. I wanted to document for myself what her sleep is like now. She has been sleeping through the night most of the time. By sttn, I mean she doesn't wake ME up. When I was sick, I sat up and watched her for an hour in the middle of the night. She must have sat up at least 6 times. No wonder people are constantly telling us "she looks tired."

I think the melatonin has helped Goldie with being able to fall back to sleep on her own. She gets 1-1.5 mg before bed. I read on an email list that melatonin works better in conjunction with omega-3's. I didn't give it much thought until we ran out of Goldie's fish oil. I kept giving her melatonin, but she wasn't sleeping at night. After two nights it dawned on me that she wasn't getting her fish oil. I bought more and she was back to sleeping well again.

Which brings us to last night. Omega-3's have a side effect of thinning the blood so we had to stop giving them before Goldie's surgery. Then we ran out of melatonin yesterday. I went to get more and they are out of the brand we use. The brand I ended up with takes 4 droppers to equal 1 of our normal brand! And the droppers aren't marked with ml. Last night, Hank and I were up with Goldie from midnight until 2 am. That's when he put Signing Time on and stuck her in the pack and play while he slept on the couch. She was tired the entire time she was up. She kept moaning and sucking her thumb. (this is her self soothing technique) Her only nap today was 20 minutes in the van. She fell asleep outside in the swing at 7:30 and was back up at 9. I got her back to sleep and haven't heard from her yet. I'm off to join her as quick as I can. Who knows what tonight will be like.

I would appreciate any prayers or happy thoughts you can spare on Friday. I'm having a hard time just thinking about handing my baby girl over for surgery.

Summer Sickies

2009-08-15T22:10:00.000-04:00

I have been sick for an entire week now with bronchitis. I hate taking medicine when I'm pregnant, but my midwife doesn't want it turning into pneumonia. I figured it would be better to take some mild OTC stuff now than get really sick and have to take more potent drugs later. I don't know where I got this because the rest of my family seems completely healthy. Unless, you count Goldie's weird eye infection. It's not pink eye and is doing much better now that she is also on antibiotics. So, we're going to finish our weekend of trying to rest and get better. Her surgery is in less than two weeks and I want her to stay healthy! I'm stocking up on popsicles and applesauce.

Wordless Wednesday - Babywearing Baby

2009-08-12T03:01:00.000-04:00

Disabled Students are Spanked More

2009-08-11T10:27:00.000-04:00

I was a little surprised to read this.

When I was growing up, corporal punishment was still allowed in Pennsylvania. I experienced it first hand. In first grade I was paddled for jumping off of a table in the classroom while the teacher was talking in the hallway. I didn't think it was a big deal. The paddling I got from my teacher was nothing compared to what my dad could dole out at home. (I can't begin to imagine Hank treating our children this way.)

Then, in second grade, I had one of those teachers everyone talks about. The one who would put kids in the closet and tape over their mouths. A friend spoke to me while we were supposed to be quietly waiting in line. The teacher slapped us both across the face for this. I didn't tell my mom, until my friend's mother called to let her know what happened. My mom wrote a letter to the school and it was supposed to be put in her file. My brother had the same teacher 5 years later. Again there were problems with her being physical with the kids. And to all those who think teachers like this don't exist anymore, my daughter had her for a substitute last year. She spent the day yelling at the class to shut-up.

And how about my gym teacher that had children sign the paddle after he spanked them with it?

I'm glad to see Pennsylvania banned this type of discipline. However, I wonder how many children with disabilities are still subject to corporal punishment? I know of a mother whose son was slammed against the wall by an aide. He has autism. The school would argue that they were keeping him safe because he was trying to leave the building. I don't have a child with autism, but have managed to keep all of my children safe without hurting them in the process. It takes creativity and planning sometimes, but I think it can be done.

Wordless Wednesday - Eating Soup

2009-08-05T03:01:00.000-04:00

Updates and an Ultrasound

2009-07-31T19:55:00.000-04:00

We had a week of good news!

First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.

Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.

Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.

I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.

Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.

But, not before we found out we're having a BOY!

Summer Salads

2009-07-27T13:15:00.002-04:00

Sasha at The Wonder of Wysdom posted about trying to eat a healthy diet while running to appointments and caring for a baby. I can totally relate. I told her I would post this recipe because it has helped us to have ready to eat food in the fridge.

Rice Salad

Dressing:
¾ C. Vegetable Oil
¼ C. Red Wine Vinegar
3 cloves garlic (minced)
2 teas. Salt
¼ teas. Pepper
1 teas. Oregano
1 teas. Basil

1 C. uncooked rice
2 C. celery (sliced thin)
1 C. bell pepper ( I used yellow, red, and orange but a green pepper works fine)
1 ½ C. onion (sliced thin)

1 can each:
Kidney Beans (drained)
Chic Peas (drained)
Black Olives (drained)

In jar mix dressing (shake well)
Cook rice (DO NOT add salt & margarine) and turn into large bowl
Pour ½ salad dressing mixture – mix lightly.
Add remaining vegetables and beans.
Mix with remaining dressing and chill overnight.

I started collecting salad recipes a few years ago. We don't have A/C so in the summer I cook our main course on the grill and serve a salad to go with it. This keeps me from using the oven or stove and heating up the kitchen. For this recipe I would cook the rice at night or in the microwave. Oh-I should tell you, don't let that picture fool you, this recipe makes a lot. We always have leftovers.

Drinking and Swallowing Update

2009-07-26T09:25:00.000-04:00

When we saw the ENT last week I talked to him about the lack of follow-up after Goldie's swallow study and we discussed what recommendations were made. The only suggestion they had was that "Goldie drink in a seated position that provides head and neck support as opposed to sitting on her parent's lap or being allowed to stand with her cup." If the SLP had told us this I would have let her know that Goldie has had many incidents of choking on her drink in her high chair. Even if it did help her to drink safely, I can't limit her to drinking only when we she is in a high chair. She was on the verge of dehydration and not drinking enough at mealtimes to meet her fluid needs.

So, by last Saturday I was fed up. Goldie had only had 4 oz to drink in a 24 hour period. I went to Walgreens and bought some Thick-It. (I chose Thick-It because it only contains two food based ingredients. Some of the other thickeners had preservatives in them.)It took some trial and error to find the right consistency, but we did it. Within 48 hours Goldie went from drinking 4-8 ounces a day to 20!!!! She slacked off a bit after that, but has now been drinking at least 16 ounces a day for the last 4 days. I'd like to see her eventually drink more than this. Her post-op instructions suggest 32 ounces a day. I imagine this varies depending on the size and age of the child.

I really wish I had taken matters into my own hands sooner. Goldie hasn't had any bouts of constipation this week. I did receive a copy of her swallow study in the mail (2 days after speaking to the ENT) with the contact information of the SLP we spoke to. I'll have to call her and let her know what is working for Goldie.

Lately, the insurance benefit statements have been rolling in for all these tests and specialists. I told Hank they should be glad we have insurance (as am I) because if I was writing the checks not everyone would be getting paid. The SLP being one of them. Maybe this is part of what's wrong with our healthcare system. They collect a check wether they do a good job or not. This is the other doctor that wouldn't get a check from me. I wish there was more accountablility.

C-Spine X-ray numbers

2009-07-21T20:57:00.000-04:00

I called Children's and they got right back to me with Goldie's test results. Her bloodwork was normal. I was so anxious about her x-rays I didn't ask for any numbers. Then, the nurse said there was a concern about her x-ray. There is some instability and she is waiting for the ENT to let her know if we need to see the neurosurgeon. (I would feel better if we saw the neurosurgeon.) I asked what her numbers were and she gave me these: extension 2.5, neutral 3.5 and flexion 4.4. I wasn't writing as she was talking so this is what I pieced together (from my prego brain) after I hung up. I may have the flexion and extension reversed? I felt better after hearing the numbers. They sound like they're within the acceptable limits. I'll sleep much better tonight!

ETA: I got a call from Children's this morning that Goldie needs to see the neurosurgeon. Her ENT needs to know what precautions to take during surgery. I made an appointment for next week.

ENT Appointment, AAI x-ray

2009-07-20T22:39:00.000-04:00

Goldie's ENT appointment went really well. He answered most of my questions before I could even ask them. He wants her to stay overnight, so I didn't have to ask for that. We discussed the possibility that her stay could be longer if getting fluids in her becomes a problem. I really like this doctor, he was very attentive to our conversation and thoughtful in his responses.

Goldie's apnea is in the mild range so he feels the surgery should eliminate most of it. Her tonsils are big, not huge, but big enough to cause the mild sleep apnea she experiences. Of course this can vary on any given night depending on what position she sleeps in or if she is sick.

After our appointment they were able to do her bloodwork and her AAI x-ray before they closed at 5:00! I was impressed.

I'm not able to hold Goldie for the x-ray, but Hank was supposed to meet us. However he was still at work in another state. So, a nurse held Goldie while I waited in the hall. In the hall was the computer that the x-ray pictures come up on. I immediately noticed a gap between her first and second vertebrae. Of course I have no idea how much of a gap is normal, so I've been worried sick ever since we left. I asked how soon her x-ray would be read and was told tomorrow. I was not going to ask the tech. Lesson learned from the sleep study. I am praying everything is ok. My mind always imagines the worst case scenario. The funny thing is, if I wasn't unexpectedly pregnant I wouldn't have pushed the sleep issue and she wouldn't have had her x-ray until next year. So, if its normal I can relax, and if it's not we'll be glad we know so we can keep her safe and do whatever else is necessary.

Adult Content?

2009-07-19T22:29:00.000-04:00

I finally got around to getting new anti-virus software after mine expired a couple weeks ago. It also has parental controls. After installing it, I tried to view my blog and got this message:

You were blocked by CA Parental Controls
URL: http://www.livinforthelove.blogspot.com/
For the following reason: based on the category
Category: Adult

There are other categories. Such as sex and weapons. Hmmm, what to write about next...