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!

There are times when I need duct tape

Unfortunately I let things get to me today. A little too much apparently. 

The day started off with me remembering that Addy's glasses were all bent and she couldn't wear them today. I didn't know until later today what had happened to them (she apparently fell in the hallway and bent them). So that made me a little irritated because I didn't have time after work yesterday to go and get them fixed and today wasn't looking much better. She did wear them some today but they need a major overhaul, she did a good job messing them up :(

After school I told Addy to show me her library book. We talked this morning how this year she was going to get to bring her book home (in pre-k they stay in the classroom) and we could read it for a whole week. I pulled out the book and it was ridiculous. It was pretty much an encyclopedia full of the life history of Edwin P. Hubble. Don't know who that is? Well, he invented the Hubble Telescope and just happened to be born in Marshfield, MO, our school, Hubble Elementary, is named after him. Addy doesn't have a clue about this and needless to say, the book was entirely inappropriate. I was frustrated. Why would she have a book like this??? So we went back up to the library to check out an appropriate book. She picked out Mrs. Wishy Washy ;) we read it three times tonight :)

Tonight we went to music therapy and were more than thrilled that it was going to be in Marshfield instead of Springfield (about a 30 minute drive). Addy was still very tired and didn't get her little power nap before it started, however, she was excited to be back to it. We had a couple of new kiddos tonight and one former student. An incident happened (not going into details) and apparently I needed duct tape over my mouth because I REALLY offended someone and ruined the evening. 

I have now been in tears on and off because I feel like I ruined a very good thing and I'm frustrated with how things went down. Hopefully tomorrow will be a better day.

The Hair

As many of you know I cannot expose Little Man online but I think it's okay to post the hair. The hair is a major topic of conversation, looking at the pix you can see why :)

We were at the DS Clinic in St. Louis yesterday and there were 38 comments about the hair :)

Wow, I'm a slacker!

I think I may just be stopping this whole blog thing. I'm obviously not keeping up at all and I it's kinda hard to post pics and talk about our life when we have a little someone that can't be talked about or have photos posted ;)

I spent the first week of August in Atlanta at the National Thirty-One Convention. I had so much fun! It was wonderful! Cindy Monroe, the founder of Thirty-One it such a sweet, amazing person and her husband is hysterical! His praise band played for us often, the worship was great, truly enjoyed it so much! It was very nice to get away for a little bit, especially right before school was starting back up! Unfortunately my phone got ruined by a rainstorm and I lost all of my pictures on my phone :( I hadn't backed up with iCloud in forever so all of my pics from Zoey's birthday party and the beach are gone :( All of the pics I took of Little Man in the hospital are gone :( those hurt the worst! I'm so crushed! I am getting a new phone case today when I head to Springfield, it's a must!!!

Jake's been playing baseball and has been pitching a tiny bit. He really loves it! I've had to miss several games due to the heat which has been a bummer! Last week I actually had to miss due to Addy being completely exhausted, we got there and she was a miserable little mess, poor girl! No naps are not fun for her!

We finished up our summer by going to our annual church pool party on Sunday night. I haven't taken Addy to the pool all summer, just couldn't with the little one. Addy doesn't love the water but once she got in we did have quite the time getting her out! The water was freezing and she was turning purple so that was a pretty good sign that she had to come out to warm up! She still can't regulate her body temperature very well and between the sweltering heat we've had and freezing water, she was a mess!

I soo wish I would have gotten video of Jake's dive/flip things he's doing off of the diving board, he's very good!! The Olympics were so fun to watch and those divers inspired him quite a bit!

The kids started school on Thursday. Both boys are in Junior High (6th and 8th grade) and Addy started kindergarten! They all had good first days and liked school.

 Jake likes his teachers and had no trouble changing classes all day. I knew he wouldn't but you always have to worry a little right??

Cooper is in his final year of Junior High. I truly cannot believe that! These years are always a little tough and having an Autism Spectrum Disorder doesn't help that at all :( Fortunately he is a happy kid and hanging with his brother in the mornings before class starts :)

Addy was EXHAUSTED!!! Those hallways are very long for those tiny little legs that move at about the pace of a turtle!

We are working on some transportation logistics right now :) Her kindergarten classroom is the room farthest away from the bathroom with a changing table in it lol. So we are looking at changing her elsewhere ;) I told them to utilize the wagon for bathroom for Friday and I'm sure that helped! Addy would prefer being carried but not really appropriate for kindergarten ;) I admit I completely and totally carried her from her classroom after school yesterday, she is so worn out! I'm sure next week we will be looking at either an after school nap or a very early bedtime! I am so happy with her placement this year, we are truly blessed. Addy is fully included in kindergarten (as much as you can be with therapies!) with 150 minutes per week of speech/language therapy, 90mpw of PT, 60mpw OT, 30mpw of adaptive PE and 150 minutes per week with services in the special education classroom. Her schedule is looking fantastic, we are so pleased! Her teachers are wonderful! You know when someone truly cares about your child and Addy has been blessed with Mrs. O for her kindergarten teacher, what a gem she is! She happens to have a brother-in-law with Down syndrome :)

Mrs. Andrews is her special education teacher, and this is her first year with a classroom, but let me tell you, this girl is going to rock this! She has been given quite a caseload and she is doing everything she can for each and every child, she is a true blessing to these children!

Scott and I celebrated 16 years of marriage yesterday :) What did we do to celebrate? We took 4 of our 5 children on a date with us and we wouldn't have it any other way!