Ballet preview

Isabella's ballet performance is this Saturday, and I am so excited! I know she'll only be on the stage for about one minute, but the girls (Isabella and Maya) look adorable in their costumes. That's all for now. Bye!

A Scavenger Hunt and a Retirement Community

A couple weeks ago, when I mentioned that I walking through mud, or at least felt that way, I decided to invite a bunch of people over for an afternoon get together. Sarah came prepared with a scavenger hunt for the kids, and they had a blast searching the woods for items to fill their egg carton. 

Kieran and (the other) Isaac, on a mission.

This Isaac, wasn't in the mood for a scavenger hunt.

 Daddy came home early and rescued him.

*********************************************************************************

Walter and I went on a two night anniversary trip WITHOUT THE KIDS. Yep, it was amazing. And so quiet. We got home a couple hours ago, and will soon head to my parent's house to gather our children. I am currently preparing my ears for our reunion. 

When I booked our trip, I didn't realize that the Inn we stayed at, would be so popular among the elderly crowd. We were definitely the youngest people there, by about thirty plus years. When we walked into the main hall for dinner, the receptionist said, "You must be the couple that graduated one week and got married the next!" Not quite, but I'm glad that seven years and two kids later, dwe look young enough for you to think that. 

Monday morning, we overslept. Walter rushed Isabella to school and dropped Stella at the kennel, I finished packing and washed my hair, just so Walter would feel extra special. We dropped off Isaac at my parent's house, I was hungry, so we went to Panera, then we went to the grocery store (I mean really, this was getting ridiculous, we had yet to leave a ten mile radius), then I called the horseback riding place that Walter had looked up, they said we couldn't wear sandals, so obviously we had to stop at home and get my cowgirl boots. And after all of that, we were finally on our way to Ohio Amish Country, or The Switzerland of Ohio, which I honestly doubt is anything like Switzerland, but, whatever.

It turns out, I love horseback riding.

Our tour guide asked if I wanted to take some pictures and I said, "I do, but I don't want the horse to cry." Too much time spent with kids. FYI, horses do not cry when you take their picture.

I told Walter to take a picture of my boots.

The place we stayed had some trails that were closed. We ignored the signs.

"Can you take a picture of me with this bubbling brook?" My husband has a thing for bubbling brooks, cheese, and those goats at the end of this post.

Please read this...

I just so happen to be a procrastinator of massive proportions. If there were an award for procrastinators, which there should be, maybe mine is late, I would probably be one of the winners. With that said, I was supposed to mail out these fundraiser letters for the 9pminus support group, and didn't. So, I'm sending a virtual mailer right here, on my blog. Obviously, I don't count on raising $100,000 like Kelle Hampton did in honor of her daughter who has Down Syndrome (I'm sure the National Down Syndrome Society loves her), but, I'd like to give you a little information and invite you to give if you feel compelled to give.

What is 9pminus? It is a deletion on the short arm of the ninth chromosome.

How does it happen? Most cases occur de novo, or by chance, up to half occur due to a balanced chromosomal rearrangement in one parent--the child in these cases has inherited an unbalanced translocation. Walter and I have not been tested so we do not know if Isaac's deletion is inherited or, by chance.

Typical Characteristics of a 9pminus child: mild to severe mental retardation, developmental delay, hypotonia, trigonocephaly, small midface, small mouth, high or cleft palate, small ear canals, narrow ears, upslanted eyes, narrow hands and feet, congenital heart defects, renal malformations, hypospadias in boys, inguinal or umbilical hernias, GI reflux, constipation, scoliosis, feeding problems, speech problems, seizures, low muscle tone, sensory integration issues.

As quoted from Isaac's genetic report:

Children with 9pminus tend to have delayed onset of speech and independent walking, although they generally do attain these skills. Once established, speech tends to be fluent although narratives may focus on minor details and emotional states rather than provide a concise summary of the situation (Chilosi, Am J Med Genet (2001))" Strong social skills and easy interactions with others, including strangers, are common. Children are developmentally delayed and have mild to moderate mental retardation (IQ range: 33-76).

*********************************************************************************

If you've been following my blog for a while, you know that we've faced many challenges with Isaac and it took over a year for us to get his genetic diagnosis and after that, all of the puzzle pieces seemed to fall into place. Isaac has taught our family so much over the past two years. We've been thrust into the world of special needs, which was never a place I imagined finding myself, but we are grateful for what we've learned and the amazing people we've had the opportunity to meet along the way. The downside of Isaac's syndrome is not all of that medical stuff I shared with you, but the fact that 9pminus is extremely rare. Less than a year ago, Isaac's geneticist told us that less than 300 people in the world have been identified as having a deletion on their ninth chromosome.

Hence, the need for this fundraiser. The Chromosome 9p- Network strives to share new information with families and also connect families in order for them to offer support with one another. We have some idea of what the future will hold for Isaac, but on the other hand, there is so little research, that many questions are left unanswered. The 9p- Network is a non-profit organization and made up of parents who work really hard to reach out to other 9pminus families. Any amount of money you are able to donate will allow funding for the annual Yearbook that is printed for each family and also the planning and preparation for the Triennial Regional Conference (which we look forward to attending!).

As printed on the invitation I was supposed to send in the mail:

You are cordially invited to

The 9p- Springtime Tea

In honor of 

Isaac K.

Our tea is given you see, 

To support our 9p- families.

Your funds will allow our programs to blossom, 

so we can help our children, who are awesome!

It's the most delightful benefit you will ever attend, 

And it's just support and love that you will send.

On Sunday, the 13th of May

We'll have a tea, so save the date.

No cookies to bake or silver to lend, 

No linens to launder or beg from a friend. 

You don't have to worry about what to wear, 

And no car fare or parking to give you a care. 

So here is a tea bag, don't put it away.

(pretend you have a tea bag, okay?)

Mark your calendar and remember that day. 

Sit down and relax, sip the tea at your pleasure, 

Your generous gift will always be treasured. 

Place: Home Sweet Home

Date: Sunday, May 13, 2012

Time: At your convenience

RSVP: Give with your heart

9p- Springtime Tea Donation

Donor Name: 

Address: 

In honor of:

Donation amount:

Please make all checks payable to Chromosome 9p- Network

*Donations from outside the U.S. should be made in U.S. currency or through PayPal at www.9pminus.org

All donations are tax-deductible. 

THANK YOU!!!

Mail Donations to: Chromosome 9p- Network P.O. Box 524 Appleton, WI 54912

And just from our family, thank you for reading our story and supporting our family! 

Sierra, Walter, Isabella, Isaac, and Stella

Stuff

Thursday night Isaac was crabby and when he's crabby and I'm crabby, it usually means it's a good time to go for a drive. Walter finished up Isabella's bedtime routine and Isaac and I headed out. I thought, "who can I go visit at 9:00 p.m." Why, my parents, of course! Obviously they love to see me at any time of day. Right? Right. My mom, brother, and sister were sitting outside and I plopped down and said, "I feel like I am walking through thick, gooey, sticky mud this week, and I can't get out of it." The mud this week isn't nearly as thick, but I think it will be good for Walter and I to get away next week for our first trip without the kids. Yes, I'm excited. Yes, I'm nervous. And yes, I'm already sad about leaving Isaac. Okay, I'm sad about leaving Isabella too, but she pretty self sufficient these days. 

Wedding season started a couple weeks ago, and after the first one wiped me out for a couple days, I decided it was time to reunite with Tony Horton and get back into my workout routine. He creamed me, and it was painful. If you want to check out some of our wedding photography, go to Grooms are People Too. When I got home from last week's wedding, Isaac was still awake and held out his arms and said, "DA DA!" Um, no. But I missed you, so I'll forgive you.  

Sunday evening Isabella helped Papa with some gardening....

Isaac watched with a very grumpy look on his face. This picture doesn't appropriately capture his grumpy face. He was happier when he pooped about an hour later.

Then he got a hair cut so that we could lose a little of the Einstein look.

He was very worried about his loss of hair and kept checking that he still had hair on his head.

That night, Isaac let me hold his hands and walk behind him. He walked around my parent's house two times!

I keep forgetting to mention that Isaac and I have been taking a sign language class. Since his speech therapy is on hold until we're able to co-treat with physical therapy, this has been a wonderful opportunity to learn more sign language and it's almost like speech therapy and sign language wrapped into one. AND, the teacher comes to our house. So it doesn't get much better than that. Isaac's speech is definitely improving and he has a more diverse variety of sounds, but signing has been going really well, and at this point he probably effectively communicates more with signs than with one vowel sound for what he's trying to tell us. When we ask him he wants a wagon ride, he will usually say, "wa" or "whee", and when we ask him if he wants to swing, he says, "whee!" and uses his own sign for swing. Most animals simply growl. When he wants to watch a movie he says, "moo"--I wrote that and it made me laugh out loud. I continue to drill him on body parts, shapes, colors, animals, etc., all the things I took for granted that Isabella knew by the time she was two. We'll get there.

For today, remember how blessed you are, special needs or not, by what your child has knowledge of and the skills they possess.

Happy Tuesday,

Sierra