Saturday, February 28, 2009

Rare Disease Day 2009

Just thought I'd give a shout out to Rare Disease Day 2009. This is a day to recognise and raise support for rare diseases.

A few things we've learned about rare diseases:


According to the National Institutes of Health (NIH), there are almost 7,000 rare diseases
affecting nearly 30 million Americans.


Nearly one in 10 Americans has a rare disease. Many of these diseases are genetic and
present at birth (although some genetic diseases may not become apparent until much
later in life). About half of the people known to be affected by rare diseases at this time
are children. One of NORD’s continuing themes is that everyone knows someone
affected by a rare disease. With so many different types of diseases, even though each
one is rare, the impact on the American population as a whole is significant. For that
reason, rare diseases are an important public health concern.


What are some of the problems experienced by people who have rare diseases?
• Difficulty in obtaining an accurate diagnosis
• Limited treatment options
• Difficulty finding physicians or treatment centers with experience in treating a
particular rare disease
• Treatments that are generally more expensive than those for common diseases
• Reimbursement issues related to private insurance, Medicare, and Medicaid
• Difficulty accessing medical, social, or financial services or assistance because
those making the decisions are not familiar with the disease

Since Williams Syndrome is listed as a rare disease I thought I would join in and get the word out! To learn more or donate please click here: http://www.theprojectcharity.org/index.php

Monday, February 23, 2009

A little project

Well...not feeling too well these past few days! :( Haven't been sick in awhile so I guess I'm due!...what better way to pass the day than set up the kids with a movie and blog!




Here's before and after pics of a little project that Nate and I started after Christmas...when I say Nate and I...I really mean Nate. You can only imagine...there are 54 cupboards and drawers.


We had to take them off...sand, and then paint 3 coats...sand the edges and then 2 more coats of clear...remember each coat had to dry. I thought it would never get finished! Nate managed to finish them all in about a month!...







We still have a lot left that we would like to do...crown molding on the cupboards, back-splash tile...and the floors...but this was a fun and fairly inexpensive change to get us started! I guess if we get bored we can get started on the cupboards in the 3 bathrooms...








Ashtyn finally turned 3 months on the 17Th. I can now take her to the gym nursery! One of my favorite things...is getting time at the gym...it is so good for me physically and emotionally to have that time to myself everyday! My favorite are the spinning classes!....


So now that I'm going to be working out...I figured I best be gettin' healthy again! I had decided that after all the Valentine treats were finished...we are eating healthy! I was going to resist from making baked goodies for awhile! Literally within minutes of that thought...




DING DONG





My husband ordered 8 boxes of Girl Scout cookies...guess we'll have to start the diet next week! :)


Sunday, February 15, 2009

A little Valentine fun

video
I just got this on video this morning...thought it was fun...
Ok so our laptop is in surgery...no good! I'm in a hooded sweatshirt with the hood up, wrapped in a blanket using our computer in our cold cold basement! (oh the dedication!)
Wanted to share a bit about our Valentine fun...Hailey had her first Valentine exchange at school. I definitely think that I was a bit more excited than she was! I love any excuse to exchange love notes and candy! It also happen to fall on our snack day. So we had a lot of fun making (or cutting out pre-made Pillsbury) sugar cookies! ...Turned around to put them in the oven. Yes Hailey "helped"...can you tell on which ones?
Her Valentines What's a holiday without a special outfit...don't worry Ashtyn will wear it someday too! (that how I justify everything to my froogle husband!)
...interruption while I travel up 2 flights of stairs to replace a dang binki!Hailey managed the concept of giving the Valentines to her friends and collecting them ...she did however, struggle with the concept of waiting until we arrived home to enjoy her candy!
And yes, my creative stud of man took me for a romantic night of Salsa Dancing in downtown Denver. There was a short lesson to start the evening off...and then away we went! Our toes are a little sore from being stepped upon...but we had blast! I'll tell you what though...there were some people that were INTO IT! It was amazingly entertaining to watch the semi-professional dancers shake it across the floor! Not to mention the live salsa band that all happen to be swaying simultaneously to the beat!




Friday, February 13, 2009

A little bit on Hailey...


video


Hailey saw the Geneticist today at the Children's Hospital. To be honest...I think that we left a bit more confused then when we arrived. I had a list of questions and thought I was all prepared...and basically they told us that we will not know how severe her case is until she is older. As for all of my little questions... he encouraged us to find a support group or someone further along in the journey that could mentor us. If I understood them right (which at this point am totally not sure that I did) there was a 1% chance of Hailey having WS randomly at birth. If however, Nate or I were carriers she would have had a 50% chance. We are getting blood testing done on both Nate and I to determine that information. This will help us decide if we would like to try for a 3rd or possibly adopt. Thanks again for all of your prayers and support! Glad to be done with apts concerning this for a little while! Happy Valentines Day! XOXO

Monday, February 9, 2009

Book Review

My girlfriends talked me into reading Twilight...loved it! It's the longest fiction book I've ever read and I'm so glad that there are 3 more books in the series!

Ashtyn's fun weekend!


We took Ashtyn to get her ears pierced this weekend!...she won't be asleep for long!
Don't worry she didnt' even cry for a minute!



Wednesday, February 4, 2009

A new perspective

The first few days after I found out about Hailey's diagnosis of WS, I was on the Internet constantly, trying to figure out more about the syndrome. I don't think that I was ready for that at the time and it made me very unstable. I would just sit, read and cry. My husband then banned me (rightly so) until we had processed this and spoken with the doctor.










That was in October and I have not googled it once since then...until yesterday. I do think that I needed that time to process everything and have an emotional break. I don't think that I have been in denial, just not at a point ready to move forward and possibly find other people going through what I have. Maybe a little scared at what I might find. It scared me a to come across another family that had a child with the syndrome. What if they were a more severe case....or a less severe case?







So I searched yesterday. What I found was very encouraging. I found a couple of groups on Facebook. There is a page with a message board and you can see the different problems families are having and then ideas and suggestions from people that have been there.





One of the major things that we have had to deal with is SLEEP...or lack there of! I have put Hailey to bed at 8:00 every night. I don't understand why she can't get the picture that this is a normal part of our daily routine. Some nights are great and other nights not so much! I can almost count on my fingers and toes how many times she has completely slept through the night. Sometimes getting up 5+ times! Most nights at 4am she would come stand in my doorway call my name and I would place her back in her bed and that was that. Sometimes however, it was an incredible fight! "Lay with me mom!"..."Mom don't go! Please!" and she would cry and cry. I was used to it, but recently found the end of my rope and bought a gate to put on her door so that she can't get out of her room. I hear her sweet voice at 3am "mom...mommy" I've been ignoring it and she eventually goes back to sleep...often through tears.









I always thought that this was my fault. That I did something wrong when she was an infant. That I wasn't strict enough with her...! Why couldn't I get her to sleep through the night?




After I found a discussion board on this exact issue...my eyes filled with tears...she wasn't the only one! It seems as though many others with the syndrome deal with this same issue. They say that these kids have anxiety and sometimes it was easy to put their kids to bed and other times it was a nightmare. Sometimes they would wake crying in the middle of the night for no apparent reason and couldn't get them to calm down. That was exactly what I have been dealing with for almost 4 years now!...There were also discussions on difficulties in discipline and potty training. That's a whole new post in and of itself!








I know that this isn't going to give us all the answeres, but it definitely helps me to know that she is not the only one that deals with this and that it is not my fault...There are absolutely ways that I can improve as a mother. I think that educating myself more on her syndrome can help me to be the best that I can!





Her geneticist apt got bumped up 5 whole weeks...so it is next Friday the 13Th...creepy huh! :) I am writing down a list of all my questions and sleep was definitely one of them! I'll keep you all posted after that...I have no idea what to expect or what new they will be able to tell me, but am excited to be done with this final step in the diagnosis.




I also attended a Special Ed class last night for Cherry Creek Schools. They gave me this and I thought it was cute!



Top 10 Reasons to Give Thanks for Your Child with Special Needs:


1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and shallow. Your child will make sure you always have something worthy to worry about.




2. Developmental delays=more years of hugs, kisses, and little-kid sweetness.
My 13 year-old still wants to sit on my lap, give me hugs and tells me he loves me. What mom of sullen teen doesn't secretly wish for the same?




3. Maybe someday, Ty Pennington will come build you a house.

Hey Extremem Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.



4. Any little milestone is a cause to throw a party
Your child works hard for every step, sit-up, and syllable, giving you lots to be excited about.



5. Every day is a learning experience.
Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure!



6. You have the privilege of putting several doctors' children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.


7. You meet a better class of parent in waiting rooms and support groups.
Your child gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.



8. You have and iron-clad excape excuse for any occasion.
You'd love to stay at that boring party, crowded event, endless church service,but you know your child just couldn't tolerate it. (And if sometimes it's you who can't tolerate it--who's to know?)



9. Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.


10. Your blessings will always be fully counted.
Other parents may take the gifts their children bring for granted. Not you. Not ever.