Tonight is one of my favorite nights of the year.

The Down syndrome Association of Central Oklahoma’s annual Christmas party.

I just love visiting with other like-minded families, seeing each other’s kids & how they have grown since last year. Santa arrives, gifts are given & dinner is included.

The girls & Marcus had matching outfits. The girls dresses were beautiful and Marcus’ shirt was just adorable. A friend of mine, Angela from Custom Threadz made them. The pattern is Matryoshka doll in a nativity scene. Could not have been more appropriate for our FUO’s (Former Ukrainian Orphans). I’m looking forward to hanging their matching Christmas stockings from our fireplace this year too.

Tanner was having a great time. He was glad to see friends tonight he had met during SibShop this year. At SibShop, brothers & sisters will: meet others whose siblings have special needs, have fun, talk with others who “get it”, learn about disabilities & services available & have more fun!

Taylor enjoys this night as much as I do. She was such a great help. We have a great time visiting with other families & getting to know new ones. Taylor says, “Yay for chromosomes & lots of them.”

Wayne & I could not be more proud to be a part of such an amazing community.

We’ve been blessed 3x by Down syndrome, thankfully so. My heart is full.

We feel blessed to have the support of some amazing families, the Robison’s included. Breanna is a precious young lady we go to church with. We have seen her blossom into a beautiful young lady.

This was Mia’s FIRST DSACO Christmas party. She had a blast. To my surprise she even sat on Santa’s lap. She singed Santa over & over until it was time to actually be up close & personal. She’s a trooper!

Another great part of the evening was receiving the much anticipated annual calendar from DSACO. All 3 of the little’s were able to participate this year. Marcus was recently halo free after a trip to Philly & Mia was HOME for less than a week. My sister, Jennifer found matching plaid pajamas in April for all 3 of them. We knew it was meant to be. Another first for our Mia Grace. What fun we are having!

The 2012 calendars are for sale for $12. Please let me know if you want to place an order & not only support Marcus, Macey & Mia but also the Down syndrome of Central Oklahoma. Thank you in advance.

Thursday night we met our friends from the Down Syndrome Association of Central Oklahoma at Earlywine water park. Anytime we can get together with friends is a good time. It was a much needed break from the sweltering heat. Here in Oklahoma we have had record breaking temps. with little to no rain. Much like the rest of the country. We go from an air conditioned house to an air conditioned car. Can hardly stand to be out in it for too long. So an evening at a water park was a great idea. After dinner hours the price drops to half price. That makes it affordable for our family of 7 to have fun together at a price we can afford.

The host reserved a pavilion with tables & shade for us to fellowship with one another, while having our dinner together. We ate pizza. A family favorite of ours. Marcus will eat pizza as often as you let him. It has become a favorite of Mia’s as well. She says with her raspy voice, “Pizza, Pizza.” You can understand her words better than her sign. We’re working on that. 

It was a great time getting to catch of with others while introducing them to our newest addition, Miss Mia. For some this was their first time to meet her. Mia was quick to make friends with Courtney. Courtney said hello to Mia while waving. Mia returned the greeting with her raspy voice, Hi. They got along great as they shared hugs & pretzels. It was as simple as that.

Taylor pointed out how comfortable everyone was with each other. It was a nice sized group. Enough that we were able to visit with each family. Taylor also mentioned how when someone’s child was upset because of the heat or not getting their food quick enough or the bumble bee that was buzzing about, no one stared. No one looked twice. We were all alike going through the same situation together. I’m glad that Taylor is aware of how much support this group can be. I will tell you it was one of the most enjoyable evenings we had with a group in a while. We weren’t different. It was nice.

Seth, T&T, Hannah & Bethany Malone             Elianna & Eli Malone

Earlywine is a water park 15 minutes from home. It is family friendly & wasn’t too terribly crowded for a Thursday night. There are 2 large slides & lots of fountains for the kids to play in. The “pool” starts off gradual & gets deeper. That means it is fun for every member of the Dickinson family. from the little to the older ones who want to swim in deeper water & go down some exciting water slides. This mom likes it because I see each one of my kids no matter where they are in the park. T&T have the freedom to go anywhere in the park & still be safe. I stay with the little ones following them from one fountain to another.

-Poor Macey wants to go off with Taylor & Tanner & be a Big Girl. She is miss independent & getting so big. T&T are both so good to spend time with her & bring her back when they want to do the water slides.

-Mia is happy to stand in the water only ankle deep. By the end of our 3 hour adventure she was quite brave as she went further out into the water. She loved the fountains that shoot up from the ground.

-Marcus is a fish out of water. He LOVES the water! He could hardly wait to eat & get in the water. He was one of the kiddos wining from the heat & ready to get wet. He wanted to eat pizza but he wanted to swim too. Hard spot to be in. Fortunately for him he was able to do both. He loves to float, crawl, dunk his head & get almost get close enough to the fountains to get splashed. He is so fun to watch. He smiles from ear to ear in the water. The water is a place where he is comfortable. A place where he feels safe. A place where no one tells him No. A place where Marcus can be Marcus. I love it for him!

The best $20 I spent was for each of the kids life preservers called Puddle Jumpers. It allows them to get into the water & float. Both of their arms go through a floatie & one across their chests, attaching in the back. It’s the only way this mom of 3 special toddlers can feel good about them being in the water all at the same time. Wish I would have come up with this invention myself. We saw lots of them at the water park. We bought ours at Target & Academy.

One more shout out for the cool flip-flops I’ve been sporting since last years national Ds convention. Love them! It’s all about awareness. It gives me an opportunity to share about Ds & the 3 special blessings we’ve been given. Taylor & I were so excited to meet the founder & hear her personal testimony while in Orlando last year. I would invite you to her website to browse, shop & share: www.downsyndromefootprint.com “The Down syndrome store takes great pride in being the only store to guarantee that every 100% Authentic Down syndrome Footprint product is made or packaged by an individual with Down syndrome.”

We so enjoyed ourselves with great friends for an evening of fun at the water park. I sure wish we had a splash pad in our own back yard. Our blow up pool will have to do or better yet another trip to Earlywine.

Blessings!

We have a new driver in the Dickinson household. Taylor has her driver’s license!

Taylor took only her 2nd drive time with Freeman’s driving school Monday morning. She was finally excited to drive. They picked her up for her lesson & she drove for 2 hours. She drove 3/4 of her time on the highway, driving 70 mph. The other part of her lesson was spent on up hill & down hill parking & only a small portion on parallel parking. They have included that in the driving part of the test again.

Her instructor was confident that she was ready to take her driver’s test. I thought maybe in a few more weeks or so. We would continue to take her out to practice. Not the case. Freeman’s called late Monday evening. They had ONE spot left for TOMORROW! Taylor jumped on it! That’s my girl. She was ready.

I dropped Taylor off at the driving school at 7:30 Tuesday morning. We brought her social security card, driving permit & a $60 check for the school. She spent 2 hours along with two other students driving & going over book work also. The instructor then took them to the DMV to take their tests. Taylor went second. She tested & passed! She texted right away. She was thrilled!

What a relief to this mom that Freeman’s practiced with her twice, she drove their car to practice & test. Freeman’s also made an appointment with the DMV for her to test. They were in & out. No waiting in a long line outside before the sun rose. After she passed, they took her to the tag agency to get her actual driver’s license then home. It was well worth the $60.

I am so very proud of Taylor for conquering a fear of hers. There was a time that she was not even remotely interested in driving. She was just fine with mom & her car load of siblings taking her to & from. To be honest with you I will miss that time in the same car together. We spend a lot of time with the radio turned down & enjoy lots of good conversations in the car.

This is just another step to her independence. I am so excited that she was confident of her own ability to get this for herself. I think it “clicked” for her when she spent Spring Break with her friend Maggie from school, snow skiing. She was excited to go but was terrified to ski. After taking lessons & with lots of encouragement from her sweet friend & precious family she was hooked. By the second day on the slopes she was confident & ready to go again. It just takes an extra push for some.

Snow skiing, driver’s license…excited to see what’s next for Miss Taylor.  She is my first born & so many of her firsts are a first for me as a mom. She makes her mom proud!

Blessings!

Our recently adopted, Mia Grace will be having open heart surgery. The date has been scheduled for Monday, September 19th. We knew there was a heart issue when we met her. We later found out it was a heart murmur. Some holes will close on their own, some require medication & others require surgery. Mia’s heart should have been repaired by her 6 month of life. Coming from on orphanage in Ukraine, that was never an option. I did however find out, on one of our many visits to the “Big O,” that they were indeed treating her with medication for her heart disease. A small dose of little white pills given in the morning & in the evening too. We call them her crunchies. Once they are in her mouth she washes them down with a swig of diluted apple juice. That’s my girl!

Once arriving home with Mia, we began her long list of appointments with our pediatrician. She has treated our family for over 10 years. We have appreciated her support & knowledge when concerning M&M. We knew she would do the same for Mia. We seen within her first week home. Dr. M walked into our room, stopped, gasped & said, “She’s beautiful, she looks just like Marcus!” She began to examine her & was surprised at how well she looked, compared to Marcus after arriving home. I reminded her about the exam Mia had the day before we left Ukraine. The doctor there told me she had a significant murmur. She went straight to the heart, stopped & said, “Oh my goodness!” She confirmed my biggest fear. I asked, “Is it real?” She said, Yes. “I’ve never heard such a thing.” Remember she’s a pediatrician not a trained cardiologist. It was obvious to her. She assured me this is why she is here. What a sweet testimony of how she’s been with us through the treatment of M&M. I remember her asking if I knew what I had gotten myself into 2 years ago. I told her, Nope! She has seen firsthand the transformation of M&M. I knew she would help us, help Mia.

The Lord began moving mountains on Mia’s behalf. She was seen the very next by her now, pediatric cardiologist. She went in for her initial exam, EKG & echo cardiogram. We went from one procedure to another. The echo was about 30 minutes long, detailed & amazing. To see my baby’s heart, was breathtaking. This was the reason we were here. The doctor read the results right away. He asked if he could do another echo himself. Mia was such a trooper as we repeated the same 30 minute procedure. This time he wanted it quiet. He went over & over the heart. Asking the tech. to highlight this, go back to that. I think he was amazed himself. It wasn’t long before we where back in the exam room with his explanation & results.

The doctor discovered 2 VSD’s, leakage of the mitral valve (3rd hole) & the narrowing of the right ventricle. Not excluding hyper tension. WOW! The doctor was amazed at how well she looked & how well she’s doing considering her heart defect. He told me her condition should have been repaired before her 6th month of life. I told him God has spared her & we believe this is the WHY he called us to rescue her.

What’s next?

Mia would now need a heart cath. to confirm his findings. Surgery was inevitable. That is, if her hyper tension who allow it. The upcoming heart cath. would confirm that. The heart cath. was a few short weeks later. It confirmed what we already knew about her heart, with no surprises. Thank goodness! We would then wait for a date. A date to heal her little heart.

We waited & waited…

We prayed for the best date for Mia. A time that God knew would be best for her & our family. I was called by the surgeon’s office to schedule a date. There are several factors when determining a surgery date. First & foremost Mia’s condition. How is she doing? Is she symptomatic, meaning does she turn blue or have shortness of breath? Mia is responding well to her medication with no symptoms. Next, does our family have any dates of concern such as deployment of a spouse, family vacation, school aged patient, etc. Nope, we’re good there too. So finally, it was what’s first available after all those factors. They were booking all the way into September. I forgot to mention, there is only ONE surgeon in OKC that can perform this surgery. It just goes to show how many little hearts need repair. Mia will have her turn. Lord willing, on Monday, September 19th.

We covet your prayers now for her health, for her little heart to be strong. We pray for the surgeon & team who will be the hands & feet of the Ultimate Physician that day. We pray for our family & the details of who will help fill in the gap as we care for Mia in the hospital & the days & weeks after as she recovers. God knows our needs & we have no doubt he will continue to provide on Mia’s behalf.

Blessings!

When we arrived home with Mia just over 2 months ago we knew we would have a list of places to go. When her heart condition was confirmed we knew that would be priority to everything else on the list. After her cardiologist apt. & heart cath. we were able to schedule a few necessary appointments.

One being her immunizations. We were given a shot record as we exited Ukraine but were unsure how accurate it might be. Was she really given the immunizations or where they expired? Not a risk we were willing to take. Our pediatrician recommended, like she did with M&M, to start over.

We began the process today. Mia did great during the first shot, then the second, she cried on the 3rd. She was all better when it was over. She was quick to show me her pink camouflaged band aids on both thighs. She showed daddy to after she woke up from her nap. We’ll go back next week then again in 6 weeks, right before her heart surgery.

Mia is a big, brave little girl!

Blessings!