Happy Halloween!

The 25th

I don't like October 25th. My dad died six years ago today. I miss him soo sooo much. I was already dreading this day and it was worse than I imagined. My Addy is SICK! Yesterday at her 3 o'clock feeding at school she felt warm so the nurse took her temp and it was 101. On Monday we were at her ped for an injured foot (she sprained it, no idea how). She finished Zithromax on Sunday for a respiratory infection but her cough was still pretty bad. Her doc listened to her and said she sounded good but wanted us to continue with her nebs but add Pulmicort, so we did. I knew she really wasn't improving but I just had her checked out. When I got her yesterday I could tell she was NOT GOOD. I called the doctors office (knowing her ped is now in Hawaii/stinker!) but was hoping the on-call doc would call her something in. Nope, needs to be seen. Weeellll, that was what was supposed to happen. We went in this afternoon and her temp was 103.8 this morning and ran around 101/102 this afternoon. Her pulse ox was 89 this morning (yeah, NOT good). It has hovered around 93/94 this afternoon and evening. She is usually inpatient when it goes to 93 or below. The on-call doctor listened to her for quite awhile and said that she had good air movement on the right side but not at all on the left. Addy was coughing when the doc was looking in her throat and apparently she is coughing up some lovely yellow goo. Nice huh? We went to the hospital for x-rays and sure enough, my little princess has Multi-focal pneumonia. She has it in all four lobes! She is SICK! We went back to the ped and got two shots of Rocephin and another neb and pulse ox check. She was 94 so we were fortunately able to come home! Scott is in Seattle until tomorrow night, he's been working there since Sunday. Not a great time for Addy to go inpatient! I take her back in the morning to be monitored to see if the injections did anything for her. If not, in we go. If she's improving then she will get two more injections and sent home. PRAYING that is what happens! I am not loving having such a sick baby girl!

Addy is SIX

Unfortunately I haven't been able to keep up with my 31 for 21 this month :( first time since I started blogging. I guess having an extra child at home and practically being a single parent with Scott working two jobs (just for two more weeks though!) I just haven't had the time. I'm exhausted at night when the littles go to bed!

Addy turned six on the 18th. If you ask her, she is 18! Too stinkin funny. We've worked on it so now she says "Eight.... no six!" Oh how I LOVE this girl!

Here are pix from her actual birthday:

Her most favorite gift! A book that I made on Shutterfly for her to start recognizing her family members names in print. She absolutely LOVES it!

Zoey sent her a darling doll that Ruby's mom made! It is so cute and has the best pink hair ever! Addy is a little scared of her right now but I'm pretty sure she'll warm up to her soon!

Today we had her birthday party. It was an amazingly good time!!! Several friends weren't able to make it which was a bummer but she had a great time anyway! Her PHENOMENAL Music Therapist, Morgan, came to put on the show :) The kids had a mini therapy session and then made a drum and guitar. Addy's favorite part was Karaoke  :) She sings a pretty fantastic  "Call Me Maybe! I have it on video on my phone but it doesn't want to upload so I'll have to try later. Here are some pix of the party, her "boyfriend" Marc was able to join us, she was so excited, she's pretty enamored with him!

Her friend Isabella, she's in her kindergarten class with her.

She LOVES her shaker eggs!

Addy and Marc

She's really trying to get a kiss, he wants nothing to do with it!

Making their drums :)

Addy has done something to her right foot and is not wanting to bear weight on it so she's having to be prodded to participate! Guess we'll be heading to her ped tomorrow... sigh

YUMMY cake!!! You can't see them in the pic but the icing is covered in sparkles :) It was chocolate with banana cream filling, soooo goood!

She's trying sooo hard to blow that candle out herself! lol

I got her to try a tiny bit of icing, girl has no idea what she's missing!

You gotta love the attempt of group pictures!

31 for 21 Day

Nothing to do with Down syndrome. Just my darling little girl participating in cheer camp tonight at the varsity football game :) Even Jarika came to watch :) Pix aren't great because I'm a horrible photographer and I was using my zoom lens without my tripod. But you get the idea, girl's got game :) The Marshfield Football League (K-6th grade) got to run on the field before the game. Pink socks boy is Jake :)

31 for 21 Day 10

Well, didn't make a full month this time around but I'm doing my best!!

Addy must be enjoying cheer camp because we have heard "Marshfer (Marshfield) Budays (Blue Jays) repeatedly :)  It may rain on Friday night and that will be a bummer because it's always so fun to watch the little girls strut their stuff!!

Today's info from NDSS:

MYTH: People with Down syndrome have severe cognitive delays.

TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

As a speech pathologist I have been involved with testing many children with Down syndrome. My personal opinion is that children never test by showing what they really know. Addy seems to be the type of kid that once she shows you she knows something, that's it. She did it, therefore be pleased and don't expect it again lol. Her cognitive abilities are definitely delayed, however, her cognitive skills are not her weakest area, her motor skills are. Addy amazes me daily with what she knows and there are always those times when I know that she just doesn't understand. It makes me sad but then again, she is a gift as she is and when her little mind is ready to get it, she will :) 

31 for 21 Day 7

Today was once again a little crazy. Scott has been working two jobs for awhile and today was a day that he left around 8 am and we haven't seen him since (it's after 8pm now). Addy started with a gunky eye yesterday and woke up this morning with it all crusty and yucky :( I started her on her antibiotic drops last night and gave them as prescribed today. It wasn't running anymore but still doesn't look great :( she was really crabby today too. I think she was just tired, she went to bed just after 6pm. This has been the norm since school started lol. She's gonna have to step it up a bit this week though, she's participating in Junior Cheer Camp this week :) She's going to LOVE it! Every time we go to the games she points to the cheerleaders and says "Jarika" :) she watched her cheer for years!

This was the first game we took her too :) She was 11 months old and sooo precious!

Addy still points down to the track and thinks Jarika is there lol. It's been three years but she still looks for her!

My post today regarding DS is definitely inclusion/acceptance. I'm so thrilled that Addy is going to participate in the camp this week. I know she's going to love it! Is she going to know all of the words and moves? Probably not, but does that matter? Nope, not a bit. Many other girls won't have a clue either lol. But it will be absolutely darling no matter what!!!

31 for 21 Day 6

• Today's been a little crazy with a cranky baby, freezing cold weather and a cranky almost 6 year old so today's post is taken from www.ndss.org. Great information :)
• 
  
• Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   

• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

• There are more than 400,000 people living with Down syndrome in the United States.

• Down syndrome occurs in people of all races and economic levels.

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

31 for 21 Day 5

I stayed home with Little Man today since he's been sick. Fortunately he is doing great :) So much better than a certain chromosomally enhanced little girl I know :) However, this is his opinion of neb treatments.

31 for 21 Day 4

Addy has an addiction to technology, she honestly feels like she's being tortured if her Ipad dies, it's quite funny. She amazes me with her tech abilities :)

31 for 21 day 3

I didn't really have anything specific to post today but then my day changed! My little man has pneumonia :( first time he's been sick :( Soooo today I'm posting about lungs lol.

Addy's lungs have always been sick. She was born with chronic lung disease and severe pulmonary hypertension. She was on O2 for the first 19 months of her life 24/7. She got 4 nebulizer treatments per day for a year and a half. She was on lasix and viagra (yes you read that right) until she was 22 months old. She slept every night with a pulse ox that would alarm often, especially when we first brought her home. Whenever she gets sick she usually ends up with the need for oxygen. I have lost count how many times she has had pneumonia. She has had it twice in 2012, in January and June. I'm REALLY hoping that Little Man doesn't share! She is just now getting over a nasty sinus infection.

When we first brought Addy home her former pediatrician looked at her chest x-ray and told me "her lungs are crap". Nice huh? Addy has fought so hard and she is doing so well, I'm sure if her former doctor saw her now he would be blown away. Her lungs are still vulnerable but she is one tough cookie :)

According to the NDSS, The lungs of children with Down syndrome do not develop as fully as in the general population. Consequently, the growth of blood vessels throughout the lungs is limited. The narrowed arteries of the lungs hold potential for lasting consequences due to the increased pressure and flow of blood through the lungs.

31 for 21 day 2

Currently we have two children in our home with Down syndrome. Little Man amazes me everyday. I know we shouldn't compare children but we all do it lol. Addy's health has always held her back and watching a baby with Down syndrome with minimal health concerns has been a pure joy. I wish I could share more but you know I can't :( 

I need to upload some videos, just haven't had the chance. Addy's motor skills are definitely her weakest area. However, since she started kindergarten her gross motor skills have blossomed!!! She is walking so much faster than she was and she doesn't have such a wide gait either ;) I am so proud for everything she has done and how far she has come! 

Here are some of Addy's milestones :)
Rolled Over 10 months

Sat Alone 18 months

Crawled 34 months

Walked 4 years 9 months

She is such an amazing little girl, I'm so proud to be her mommy!

31 for 21

Well... it's that time of year again!!! DOWN SYNDROME AWARENESS MONTH!!! I have always loved October, that is until my Dad passed away in 2006. Little did I know that six months later I would learn to love October again. Addy will celebrate her 6th birthday this month! How great is it that she was born the month to celebrate DS??? How in the world can she be six??? We started the process of adopting a girl with Down syndrome in July of 2005, she joined our family in August 2007. Still can't believe we are lucky enough to be her parents :)

(One of the first pix I saw of her :) I was hooked immediately!!!)

I haven't blogged in awhile. Things have been super busy and I am down right tired at night! Once I get the baby to bed I usually follow him pretty quickly!

Since it is DS Awareness month naturally I will focus on our beautiful Addy :)  Currently Addy is 36 inches tall and weighs 28 pounds. She's a tiny little almost 6 year old! Addy is fully included in kindergarten and is thriving! She does get a LOT of therapy and goes to the resource classroom 150 minutes per week as well. I'm in the process of getting a really cute video of her showing me some of the great things she is learning :) Just waiting until her little face clears up from the raging sinus infection she has been fighting!