Madeline's Cinderella birthday celebration

Once upon a time, there was a girl named Madeline who was turning three. She wanted a cinderella birthday party so that is what she got!! We had it at the house and even though it rained about 10 minutes, it was a perfect day!! Princess Madeline wore her purple, Cinderella smocked dress and Chandler wore her purple dress. Oh and they both had crowns, of course! We had a blue castle bounce house that Madeline thought was a gift to her to keep! Haha We had crown-shaped sandwiches, "magic wands," fruit and veggie trays, chips and crown and glass slipper cookies that were made by Miss Jessi, who makes good tookies! Our Cinderella cake was made by Ashley Golman and it was perfect!! There was lots of blue everywhere and I think everyone had a blast at Madeline's royal celebration!! The party favors were "gender neutral" and had blue swirl lollipops, bubbles and Cinderella gummies. Some of Madeline's little friends from daycare came and she was very excited to see them! We are so glad that everyone took time out of their busy lives to celebrate our big girl's 3rd birthday.. Means so much to see a big smile on her face!

This Mama has only shed a few tears, like last night when Kris got the castle put up and we were bouncing in it.. Yes, me, Grammy and Shimmy were bouncing with Madeline!! It was fun but no videos will be put up! Haha Anyway, she went around giving everyone kisses, saying she loved them and I just lost it! It was just another reminder at how big she is getting and how compassionate she really is. And for whatever reason, I can't make it through singing "happy birthday" without tearing up.. I guess it just makes it real, that she is actually turning another year older. And the final time (for today!) that I have shed some tears was tonight, Madeline saw one of the toys that someone brought to donate and she said "that's one of the toys that Chandler needs to take to the kids at the hospital, it's not mine!" She wasn't upset but very sweet when she said it. So I told her that she will be able to go with us to deliver them and she got very excited!! We had decided that since we have been blessed beyond measure and the Blair E Batson Children's Hospital went above and beyond to take care of Chandler, us and even Madeline that we would do "in lieu of gifts" and have people donate toys for them to give the patients and siblings. At first she didn't like it by saying "that's mine" but we explained things and she was okay with it but wasn't sure about it. I was pleasantly surprised that she had been listening and actually wanted to give them to the kids at Chandler's hospital. How amazing is she?!? She is pretty special and her Daddy and I are blessed to be her parents.. We are looking forward to celebrating her real birthday on Monday and on April 10th when we take Chandler to her cardiology appointment and our toy donations. A good time was had by all and I know we will all sleep well tonight!

And they all lived happily ever after.
The End.

Until next time,
Queen Megan

World Down syndrome day 2013

March 21st is World Down syndrome day.  This is a day that I did not know existed until I had a child with Down syndrome.  How amazing is it that they set aside a day for these perfect children?!  Kris and I have been so blessed to have a child with Down syndrome and also to have one without Down syndrome.  We are doing our best at raising awareness and are so very proud of our sweet girl and her extra chromosome!

Just a little information regarding why March 21st is World Down syndrome day... Down syndrome or Trisomy 21, which is what it is called, not "Down's syndrome" or "Down's," occurs when a person has three copies of the 21st chromosome.  Believe it or not, 80% of children with Down syndrome are born to women under the age of 35 because we are the ones having all the babies.  So, age doesn't have a lot to do with it.   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; for instance, Chandler does not have the single deep crease across her palm and she actually has pretty good muscle tone.  The life expectancy has increased significantly from the age of 25 to the age of 60!  Children with Down syndrome usually have some type of delays, but that is just what they have, delays, which means that they will get the concept eventually, it just might take a little bit longer than others.  So, instead of asking us if our children have rolled over or if they have walked, ask us about what they can already do.  Our children work hard for their accomplishments and it is frustrating to us to be reminded of they can't do at that time.  We, as parents, beat ourselves up, because we take it personal when things don't go smoothly or at the "appropriate" time.  Most of the time, yes, people with Down syndrome are happy; however, they experience frustrations just like me and you and at six months old, we have seen this temperament in Chandler!  People with Down syndrome can also have different types of medical conditions; such as, congenital heart defects, hearing and vision problems, and thyroid conditions. Most of these conditions are now treatable, so people with Down syndrome are able to lead healthy lives.  As of now, we are only aware of Chandler's congenital heart defect, which is fixed halleluiah, praise the Lord!!!  She doesn't seem to have any trouble with her hearing or vision right now, and her thyroid will be checked soon.

Some of this information came from the National Down syndrome society website at www.ndss.org.  The other information is from my own experience at being a mother of a child with Down syndrome for only six short months.  Please know that these thoughts and feelings may not be true for all parents and that this is only from mine and Kris's perspectives.  I am trying my best at promoting awareness and this is one of the ways I feel works best for me.  I am by no means an expert on Down syndrome!!  We are learning everyday and by teaching what we know and have experienced, we might can make a difference for all people who have Down syndrome!

Now, I have heard that confession is good for the soul, and I must confess that we aren't wearing our yellow and blue or our "3:21" t-shirts or even having a party tonight.  But I can tell you what we are doing..we are loving our Chandler and all of our friends who are also genetically enhanced with the 21st chromosome!  We have been blessed beyond measure that's for sure, but with "Princess Madeline's" birthday this weekend, this special day has slipped up on us.  But I can assure you that next year there will be a blowout!!

I hope that everyone enjoys their World Down syndrome day and remembers to "keep calm, it's only an extra chromosome!!" 

loving my unique child with Down syndrome and my unique child without Down syndrome,
Megan

spring break 2013

Whew..what a fun, busy and sad spring break!!!

I will start with the Saturday before spring break (the 9th)...Kris, Madeline, Chandler and I went out to Percy Quin to see some co-workers/friends who were camping.  We thoroughly enjoyed ourselves, and we both agreed on the way home that we didn't want to leave and that we want a camper.  My family had one when I was young and we had some of the best times camping, even if it was just at Percy Quin!  At least when you are away from home, you don't feel the urge (or guilt) to clean up.  Chandler enjoyed getting out and giving people ugly faces!  Madeline had a ball and we wished we would've brought her Barbie car, but her and Niley had fun being chauffeured around like two princesses in the wagon by Weston and Truitt...not sure who had more fun, the girls or the boys :)

looks like they are having lots of fun, huh?!?

Niley and Madeline already bossing the boys around...sorry Yancey and Kris, we are all in for it!

 We met Nana for Madeline to spend the night with them and go to church the next morning and had found out that one of our sweet ladies of the church who was near and dear to our hearts, Mrs. Mary Ellen Coker, had passed away.  Her entire family is like a second family to us...in fact, she was Brittney's (Nanny B) grandmother.  She will be greatly missed by all who knew and loved her, so please pray for comfort for her family, especially during Easter and Mother's day...

Her funeral was on Tuesday and I rode with Ms. Kathy.  On the way there, I received some of the saddest news..our little friend, Jake, who had his AV canal repaired just three weeks ago had passed away.  He was exactly a month older than Chandler.  They had just gotten home to Tupelo and he went peacefully in his sleep.  His mom is a strong, Christian woman and we have become friends in a matter of weeks.  There really are no words, but please pray for this sweet family, because I know they are missing that precious baby boy...

I promise that this post is going to pep up some, but these people were so special, at 86 and 6 months, that I wanted to share and ask for your prayers...

Now on to our first Early Intervention session, which was just before the funeral.  We started off on the wrong foot when it was supposed to start at 9:00 and she still wasn't at our house, but she made it.  She is a very sweet lady and Chandler just loved her!  She asked me what my goals were and I told her that I wanted to work on motor skills and of course language development.  She worked with her for about 30 minutes but then we had to leave, because they will usually work for an hour.  She sang to her and just got familiar with her.  I asked if there was anything I could be working on and she said that I could make eye contact, say who people are (Mama, Daddy, Madeline...), sing to her, and love on her.  Okay!  Check, check, check, and check..we do all of those things already!!  I am not patting myself on the back by any means, but I am sure that she deals with parents who don't even hardly hold their babies, much less sing to them!  I am learning to be patient and know that there is not much she should be doing at this age anyway.  This is just something that I am having to deal with and pray about..  So, we will be doing our "homework" until the next time!

my hand tastes good!

6 months old already!

looks like an angel..

On Wednesday, we went to Ms. Amanda's for a play date and lunch with Carsyn and Jeremiah.  When bribing (yes, I said bribing!) Madeline to go to bed the night before, I told her we where we were going the next day.  She says, "But where is the daddy?"  I explained that Mr. Danny has to work and her response was, "Okay, we are going to see Ms. Manda, Carsyn, and Jeremiah (I can't even begin to spell it how she says it ha) tomorrow, but Mr. Danny has to work like my Daddy, Kris."  She is a mess and is VERY CURIOUS with lots and lots of questions!!!  We enjoyed our play date at the other Smiths' house and I realized if Kris wants another child and it is a boy, he better quit his job(s) and take care of him!  HAHA  Jeremiah is a cutie patootie but he is a ball of energy and wore me out just watching him...Whew!  So much different from Madeline and Carsyn, but who knows, that might just be how Miss Thang turns out especially with that spunky attitude!! :)

sweet girls wearing their cool shades!

Thursday was Mommy's day!!!  Yippee for these days that are not often enough but greatly appreciated when they happen!!  Chandler actually went with Madeline to Ms. Misa's and boy was she excited!  Kris said when they got there, Madeline ran in and one of the kids asked if her sister was there and she replied, "Uh huh" with that little chest poking out like she was somebody!!  I have no idea who she acts like..still trying to figure that one out! hehe  Anyway, I went to Hammond to get party supplies for someone's Cinderella birthday party.  I was able to find everything I needed and even had time to run over to Target before meeting "the Melanies" at Olive Garden for lunch then to see Safe Haven.  I sooo wish McComb would get with the program and get a movie theater..it would make it much easier to go to the movies!  I enjoyed my day out with good friends and it was nice to get away! 

Chandler's first day at "Ms. Misa's"

big sissy is super excited about Chandler going to "school" with her...little sissy is not so sure about this..looks like she is thinking, "help me Nanny B, come get me!"

 I forgot one very important piece of information about Chandler..... On Monday night, she rolled over!!!!  TWICE!!!!  Yes, you heard me right!!!  In her bed and she didn't like it!!  She woke me up screaming and I knew it wasn't an "I'm hungry" kinda scream, it was an "I'm in pain" kinda scream.  When Kris came running in asking what was going on, I said with a smile on my face and a tear in my eye, "She rolled over!"  Wow, it's so darn exciting when your kids do something good!  It surely makes up for the sleepless nights and cleaning pee off the floor..well almost!  haha  Speaking of sleepless nights, Chandler started sleeping in her crib, in her room and she is doing much better!  It's amazing what five-six straight hours of sleep will do for you!!  She really does like her room, but now her Daddy and I just need to remember to turn off the Angel Care Monitor when we get her out to feed her, so the whole house won't be jumping out of their skin!  We also started her on rice cereal (that she DOES NOT LIKE!!) and oatmeal (with a little applesauce in it) and it is a site to see!!  Her and I wore it the first time she tried it, but she is getting the hang of this eating thing and I can't get the spoon in there fast enough sometimes!  She can only tolerate sitting in an upright position for a short period of time, but, hey, it's only been four weeks since surgery, we will take what we can get!!  She has certainly gotten an appetite since surgery!!  And I am not even going to say that she got it back because she never had it to begin with!  Kris told me the other day to feed her cause she was looking kinda wormy!!  haha  She has some rolls, but that is more to kiss on!!

yum!!

yep, I'm a big girl

Well, that concludes our spring break!!  No, we didn't go on a cruise or go to Disney or even go spend the night somewhere, but we had fun spending time together and that's all that matters, isn't it?!

until next time,
Megan

looking forward to spring

Whew.. Things have been kinda crazy around the Smith residence lately!! Chandler has decided that she wants to be a newborn again and isn't sleeping the best at night. Which isn't the best for this Mama and Daddy! She is doing much better and I am trying not to complain too much because of her new heart which we are extremely excited about! She tried rice cereal and can we say she wasn't too excited about that and it was quite obvious from it all over me and her! So I put some applesauce in it, thinking that she would LOVE IT, but boy was I wrong!! We aren't giving up and will continue to let her try it and hope she learns to love it soon!! All of the strips have fallen off her incision and it looks amazing! And even the scab is gone from where the chest tube was and Madeline is thankful that that "bo bo" is gone! Today is a special day in that it is the last day for the nasty lasix and we all happily cheered and said "goodbye lasix and good riddance!!" No more sopping wet diapers.. Yippee!! More exciting than this is that this special step, that may seem insignificant to others, is one step closer to the end result of her recovery process. And that brings on a whole new set of tears...but happy tears!!

Speaking of tears, I ordered Princess Madeline's royal Cinderella birthday invitations this morning and I had to swallow the lump in my throat as I looked at our almost three year old. She makes us proud to be her parents with her kind and loving demeanor. She brings sunshine to our lives on a daily basis and we can't wait to celebrate her third year of life.. And don't you worry, she isn't letting us forget her birthday by telling us several times a day, "My birthday is March 25th and it is coming up! My going to have three birthdays..Cinderella, Rapunzel and Pascal!" Well this Queen of planning has already planned for a Cinderella party so Cinderella it will be, but will compromise and have Rapunzel/Pascal cupcakes at daycare. As far as Pacal is concerned, our child certainly has a VIVID imagination especially when it comes to this cute, little chameleon who is Rapunzel's friend on her shoulder. I was dressing her over the weekend and she said "let me get Pascal." She then preceded to get "Pascal" off of her shoulder and put him on the coffee table. Once she was dressed, she put "him" back on her shoulder and went about her business. If she happens to "take him off" her shoulder and doesn't put him back, she will go right back to the place where she "put him." Her imagination is very entertaining to us and also amazes us! She may be ours but she is so very bright!!

We are looking forward to spring break next week and finishing the party planning!!

until next time,
Megan

post op appointment

Today, Kris, Chandler and I traveled north on I-55 to Jackson just as the three of us has done countless times since a week after she was born. This time was quite different from the other visits. We were told that we won't have to go back for six weeks!!! Wow really?!? We actually do have a real, superstar on our hands, that is only 22 inches long! We are so proud of her and can't believe how far we have come.. Seems like it has been the longest five months but at the same time has flown by. We are so excited about Chandler's new lease on life and her new appetite!! It's like she didn't even know she was sick and now she really feels good..like she is supposed to feel!

Anyway, about the appointment! Chandler weighs 12.5 and is 23 inches long. Her oxygen sats were 100%!!!! Everything looked good on her echo, EKG and chest X-ray. They decreased her lasix to once a day for a week then no more!! I know Chandler will be glad cause she hates it! She will be on the blood pressure meds for a while and aspirin for three months. Her sternum will be healed in six weeks and she will be able to carry on with what babies are supposed to be doing! We didn't see our doctor today but the doctor we saw who works closely with Dr Parnell said that Chandler's valve is still leaking but that we shouldn't worry about another surgery until she is a teenager!! Praise The Lord! The power of prayer is an unbelievable thing.. Our precious girl is proof of that!

We have also been fortunate to meet another "friend" whose name is Jake and is exactly a month older than Chandler. Actually some of our nurses and nurse practitioners called him Chandler's boyfriend but her Daddy didn't like that very much! haha They live in north Mississippi and we were able to meet his parents on the day of his surgery. His recovery has been pretty rough but his mom has stayed very optimistic and she even inspires me! Please pray for this sweet family just as you have done for us. Kris and I have walked in their shoes almost two weeks ago and didn't have to experience nearly what they are going through.

As we are approaching March, we are constantly reminded that our big girl is turning three. I don't know why this bothers me so much, but it does! She is so grown in some ways but so small in other ways.. We are looking forward to our princess's Cinderella birthday party but we don't have to like it! :)

feeling so very blessed,
Megan

home

We were discharged on Thursday, February 21 and what a glorious day that was!! They removed Chandler's chest tubes that morning and they were all sad to see us go. And I have to say it was bittersweet leaving those who have gone above and beyond to take care of us! They also decreased her lasix to twice a day instead of three times. She will still take her blood pressure meds twice a day and will also take 1/4 of an aspirin, crushed, mixed with water to help with clotting.

We got home by 1:00 p.m. We were exhausted so Chandler and I took a nap and then Kris went and got Madeline from daycare. Can we say she was happy that we were home and all together?!? I have to admit that we were kind of nervous not having nurses or professionals right outside our door and even the annoying little machine that beeped and blinked was kind of missed, but not for long! We all missed our beds!!

Chandler has been in some discomfort especially when we pick her up but has always settled down quickly. We are not to pick her up under her arms but to scoop her so that her sternum has time to heal for six weeks. We have given her Tylenol and Motrin to manage her pain but have given her very little. As for an appetite..she has got one now! She is eating four-six ounces a feeding..you heard me, four-six ounces during one feeding!!! Wow! We have come a looong way that's for sure! We are so very proud of our super strong girl and can't believe it has been over a week since her scary surgery..

Madeline has missed her sister a lot and has enjoyed being a little mama! "Shhh sissy's here" is what we hear a lot of around our house. When we showed her Chandler's bobos, she said "yucky, cover that up mama!!" She watches me like a hawk when I bathe her and dress her, making sure I am very careful. Their love for each other brings tears to my eyes and reminds me of how blessed we are..

We go for our post op appointment on Tuesday and are looking forward to hearing what they have to say. Until then we are staying home, spending time together!

until next time,
Megan

day six

Well guess who got off of oxygen in the night?!?! With a little help from Daddy since he taped the pulse/ox thing to her toe so it quit beeping and stayed within 95%-100%. We have really missed seeing her beautiful face!! I sent my parents a picture and Madeline saw it and said "hey dos (those) things are not on her face..awww!" It was so precious seeing them together yesterday.. They have each missed each other! And I can't wait to get all my chicks in one basket at home!

The nurse practitioner removed her stitches and put strips over her incision. She said that we can bathe her but not to submerge her and that the strips will eventually peel off. She said that the chest tubes will come out in the morning, and we can go home tomorrow afternoon!!! PRAISE THE GOOD LORD ABOVE.. The power of prayer is truly an amazing thing.. Chandler is proof of that!!

After everyone left out this morning, Chandler and I took a long, much needed nap. Kris said one of us was snoring and I am going to say that it was the patient!! Haha

Brittney (Nanny B) came for a visit and Chandler snubbed her!! We think she wanted her to pick her up and had been missing her!! I said that once we are home and settled, she will have to come for a play date!

Dr Parnell came by and said that everything looked good and that she was very proud of how well Chandler has done. We will come back Tuesday and see her partner but will see her the next Friday. She is very pleased with the repair.

We had an awesome nurse today who took the IV thing out of her foot and that made her a little happier! She also brought us a wagon and we took her on a walk to get a bite to eat. Everyone thought she was precious (duh!) and she fell asleep halfway through it. They started cpt (?) which is when they clap on her back pretty hard to break up the stuff in her lungs.. Can we say she loves it?!

It will be good to get home but I have to say that we have had some unbelievably wonderful folks taking care of our girl and us for that matter! When a nurse asked why she didn't get Chandler and our nurse said cause I got her and I am lucky..just another reason why we are the lucky/blessed ones! Everyone has made us feel like family and that they love Chandler just as much as we do. That is such a comforting feeling during such a scary time!!

It is so hard to believe that less than a week ago, Chandler had open heart surgery!! Her spirit is back and her personality is shining through! She has grinned at us all day and even laughed! We are going to try not to take anything for granted because until you have been to the pediatric ICU and heard some stories and have seen some very sick babies, you really don't have it rough! The next time one of our girls doesn't sleep through the night or has an accident, we will thank God that they are well and know that it could be so much worse!! Please continue to pray for our girl during her recovery and for her leaky valve and also pray for those families who aren't so fortunate as us.

feeling like tomorrow is Christmas,
Megan