Comparing Katie with..........Katie?

Have you ever heard anyone tell you that there is always going to be someone.........happier than you, sicker than you, prettier than you, smarter than you, skinnier than you, richer than you, etc., etc., etc.? You add the word. There is always going to be someone ___________ than you. It's true. I am sure that you can name someone right off the top of your head for everything I just listed. 10 someone's. 1000 someone's. So why do we compare, then compare some more? Why do I fall into the trap of wondering if and when my daughter will do something?

Almost 5 years into the world of Down syndrome, and some days find me falling into the trap of "how long before we get there?' My comparisons are not with the typical kids, but with other special needs kids, specifically those who have Down syndrome. Even though I know in my heart that it will happen when she is ready, I worry that I am not doing enough. Maybe I shouldn't work. Maybe I am not consistent enough. Maybe, maybe, maybe. Kiley gently reminds me that everything will happen in "Katie time". Whether that is 5 months from now or 5 years from now. We have to give her time. It just seems that sometimes we will never see the light at the end of the tunnel. I hear or see something that another kid 2 years younger than her has done, and I think, "what about her?" When is it her turn? Then I get upset with myself for trying to compare what can't be compared.

We started potty training when she turned 3. Mentally, she was nowhere close to being ready prior to the age of 3, but she was starting preK and we thought we should try it. It was a short foray into the PT world. She wasn't ready at 3 either, and we held off for 6 months until she started a full year of PreK at the age of 3 1/2. She had a few successes such as going in the potty on occasion, but for the most part, she was very content to go in her panties, her pull up, on the floor, in the bed, and anywhere else it flowed. She went to two different schools, so there was a lot of people working with her also. She turned 4 and she still wasn't anywhere near being potty trained. She would do really well for awhile, then she would get sick and it would be a setback for her. I don't know if it confused her because there were so many different people trying to assist her with the training. We are halfway through another school year, and she is doing much better this year being in one place for the school day. In fact, she is holding it so well that she won't go until she takes a nap at school. Her bladder relaxes and she will potty. Holding it for long periods is not good either, but we do know she understands the concept of the potty now. It is just getting her brain to cooperate and send the right signals at the right time to allow her to pull all the pieces together at once. She will not sit on her little potty chair at all, she uses the big people potty at school and at home. That is fine by me, makes it much easier for her not to have to adjust to the big girl potty. She turns 5 in a few months, so overall, we have been working on potty training for about a year and a half now. I would love to see her potty trained during the daytime hours by the time school lets out or when the next school year starts. There are a few nights when she will remain dry all night too. I am not really concerned at this point about the night training. I know that can take a little longer to master than the daytime potty trips. The light at the end of the tunnel is on. It was just hidden for awhile, but we are able to see around the shadows now.

Of course I celebrate every potty success story that my friends share about their children. I am happy when their child masters this. I love to cheer them on. I can't help but compare at times though. One of my friends posted a question to our DS community about the time it took to potty train their child. It was a relief to see the varied responses. I don't know why I felt relief. Maybe because she already has so many challenges she deals with, and it was nice to hear that there are other kids who are taking as long as we are. We aren't alone, and I know that, but sometimes you feel like you are. I KNEW the responses would vary in age. I guess the relief came because I needed that validation that 2 years to potty train is ok. Heck, 4 years is ok. It will happen in Katie's time. I just need a reminder of that once in awhile. She has amazed me from those first few weeks when she was struggling in the NICU. She hasn't stopped amazing me since. Katie is not like any other child in this world--with or without Down syndrome. Katie is Katie. One of one.

This shirt was her brother's. She wears it as a nightshirt. How appropriate that I would be writing this post and think of this shirt.

Greek Yogurt--my new love!

Greek Yogurt, where have you been hiding???  Oh. My.  The food Gods have smiled down on me, and shown me the way.  It is straight down the path where Greek yogurt lives.  I decided to try this last week.  I am hooked!  I love regular yogurt, but Greek yogurt takes it to another level.  The only way to explain it is to say that the texture is thicker (translation: creamier).  I love that it has a lot of protein per cup too.  Downside?  The price!  The brand that got me hooked: Oikos by Dannon.  I really could care less what the other brands taste like.  I have tried the yummy flavors of blackberry, strawberry, blueberry, raspberry, key lime, and orange cream.  Can you say fabulous!?  I know it seems so exaggerated, my new found love of this yogurt, but I can't get over how much better this tastes than regular yogurt.  I can't wait to try some of the other flavors that Dannon makes.  I also want to try some Greek yogurt ice cream.  If you love yogurt, you have to give this a try. 

 



Trying to make blogging a go....maybe I will, maybe I won't.

I have debated on whether I should keep trying to write on this blog or not.  I don't have any rhyme or reason to my posts.  I definitely do not have the gift of writing.  I take horrible pictures for the most part.  I can't be bothered to use anything more than my camera phone these days to take pictures.  I guess I have decided to try it again because I am not writing in my journals, and I like how fast it is for me to just type out my thoughts instead of writing them on paper.  I started out trying to blog because I was writing updates about Kaitlyn on a site where people can share their medical journeys.  When you start on a journey that is unfamiliar, you want those closest to you to be there to encourage you, and to help you find your way. I liked the idea of writing it once and pushing it out for everyone to see.  You didn't have to explain yourself over and over.  Blogging was starting to really catch steam after our first year was behind us.  By then, I didn't have the intensity I had in the beginning to share every single cc of every bottle Katie took.  Facebook was coming around then too.  I found a friend or two to start with who had a child with Down syndrome.  It blossomed from there.  At this point, I have really limited any friends on Facebook.  I want to keep up with all my in real life friends, and it was become harder and harder to do that.  I wanted to get to know the ones I had in my list.  I remember what those new moms felt like, and when one of them want to friend me, well, how can you say no?  I was there.  I haven't forgotten.  I still remember those uncertain moments, those fearful moments, those moments when I felt overwhelmed with what had been put before me.  I want to keep sharing with those people who may stumble in the beginning.

I know 100 other blogs (all talking about Down syndrome) who write better than me, who share incredible pictures, who tell a story that makes you come back for more (and I will share those), but a part of me wants to share my Katie too. I want to share with those who may be hearing the words Down syndrome for the first time.  I want people to know what I have learned along the journey.  If I never pick up another pen to journal, I want to have a place that my children can come back and read and know who their mother was. 

I love to read, and I love to look at pictures.  Lately, I have been on a house blogging kick.  I have been finding blogs about home renovations and decorating, and I get hooked and have to read the entire history of the blog. I did this back when I was first learning about Down syndrome too.  Kind of like reading a book full of short stories who happen to have gorgeous pictures.  I can't wait to share those amazing spaces with everyone. There are some other things I want to share too. Things such as my favorite pins from Pinterest, great movies, good quotes, yummy recipes, and all sorts of other things that inspire me. 

So, I will push on and try to find some rhyme and reason in my rambling thoughts and bring them here for you all to put together.  Ha!

Pinterest Love: DIY Laundry Detergent

I remember when I first heard about Pinterest.  I was running around telling everyone that there was a new website that was going to be huge and that I couldn't get enough of it.  I loved the idea of having a virtual corkboard that I could "pin" all the ideas I love onto.  It was like a picture book of great ideas using a single photo to express whatever interested you.  I started out pinning to the variety of boards I created and then I stopped pinning and just liked everything for awhile.  A friend of mine convinced me that I needed to start pinning my likes again, so I did.  I have around 6500 "likes" on my page, with only 1600 pins on my 45 boards.  What can I say? I like to "like" stuff.  I am the same way on Facebook.  Always hitting the "like" button.  If you haven't checked out Pinterest, you need to hop on over and see what it is all about. 

Since I have 6500 likes, I figured I would share some of the ones I have actually tried.  First up: A link to the detergent I made. 

DIY Laundry Detergent

 

 

I have a pretty glass jar that I keep powdered detergent in.  I have had it for years.  Depending on the mood I was in, sometimes it sat empty for months.  (That was when I was in the mood for liquid detergent.)  We go through detergent pretty quick around here.  Our washer never has a day off and we never get rid of the laundry pile. NEVER.  I do not have a love affair with laundry, but it must be done.  I would say we wash around 10-15 loads of laundry a week on average.  Some weeks we are right at 10, others at 15.   We wash at least one load every day.  I don't know how much laundry detergent we have used in a years time, but I liked the whole idea that I could make a tubful of detergent that would last months. 

 

I made the detergent as listed except I used Fels Naptha instead of Zote.  I couldn't find any Zote in the stores I checked, so I stopped looking and bought the Fels.  I did use 2 bottles of softener.  I love the smell of fresh laundry.  I read through some of the comments on the link posted and I did follow the advice of those who said to microwave the soap and then grate it.  It grates into a fine powder without any effort.  I also used more detergent than what was called for in the recipe when I washed my clothes.  I used the entire capful off of the softener bottle.  I made the soap in August and we just ran out of it last week.  So that is around 4 1/2 months.  I spent close to 35.00 dollars on the supplies.  I was very happy with the detergent and the way it cleaned my clothes.  I will make this again in the next few weeks using the same recipe.  DIY Laundry Detergent = Happiness.

 

Thank you Pinterest! 

 



Formations of links

Edited:  I wrote this for a guest post on my friends blog, Erin, @ http://crazybeautifullove.com/, quite awhile back.  I realized that I never shared it here. Erin is a local friend of mine who also helped to get our support group started here in south Georgia.  She stays as busy as I do, but the posts she has written are wonderful. 

That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it and think how different it's course would have been. Pause, you who read this, and think for a long moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on that memorable day.

Charles Dickens, Great Expectations

I am sure many of you have had days which stick out in your mind as an "epic" day. It is a moment in time that creates a ripple in the timeline of your life. A day which you can define as life changing. For me, one such day came on the morning of a beautiful Easter Sunday.

Katie was born the day before Easter and less than 24 hours after her birth we would hear the words, "we think your daughter has Down syndrome". These words would be the formation of the first link in my life to a world that I had not ever been a part of. Three and a half years have passed since those words.were spoken to me and the formation of the links keep on growing. I am changed in ways I never dreamed possible. My chains are definitely made up of gold and flowers, tulips if you please. (Now mind you I have loved tulips long before Welcome to Holland came out. If you have no clue as to what I am talking about, google the phrase welcome to holland.)

My husband, Kiley and I have been married for 16 years.  We both work full time, me in oncology and my husband in prison management.  We were married for 4 years before our son arrived.  Blake is 12 and in the 7th grade.  It would be 9 years later that Katie would arrive, a surprise baby after a wonderful vacation.  Blake and Katie share the same type of heart defect, Tetralogy of Fallot. When I heard Katie had a heart defect too at birth, I was so upset to know that I had two heart babies, Never mind the Ds. Katie would be shipped off to the NICU in Florida due to her diagnosis. We stayed in the hospital for 6 weeks during this time dealing with breathing and feeding issues. Once we got home, we worked on keeping Katie healthy for her heart surgery. Blake underwent heart repair at 19 months in an emergency surgery--he was undiagnosed until two days before his surgery when he underwent a heart cath. Needless to say, we didn't go home after that heart cath. Katie had her heart surgery at 5 months of age. It was nerve wracking to have to see both of your children undergo such a complex procedure, but they are both doing wonderfully now. Blake even plays football for the middle school team! Katie also was diagnosed with a form of seizures called Infantile Spasms at 8 months of age. Of everything we went through, this was by far the hardest thing for me to handle. After several months of nonstop seizures, they were able to get her seizures under control and she has been seizure free since. I am happy to report that health wise she is doing amazing in the health department now. Really, the biggest challenge we face is that the 9 year age difference in our children is like raising both of our children as only children!  Talk about having our work cut out for us.  I would do it again in a heartbeat though.  I just don't want another 9 year age gap between them! 

I have been asked several times to describe to other people what it is like living with a child who has Ds. To be honest, some days are good, some are bad, just like it would be had I not had a child with special needs. The National Down syndrome Society promotes a slogan saying "More alike than different.". That is certainly the case in our lives. We do everything any other family would do. We go on vacations, Katie goes to school, she likes to play outside, she loves to watch tv, she has her favorite foods, and she loves music among many other things.  In short, she is living a regular life. But what about all of those other things you ask--things such as therapists, support groups, IEP's, Early Intervention, and delays? Well yes, they are part of our everyday life too, but we are not defined by those things. I like to think of our lives as being enhanced by these things. Society's perception of Ds for the most part has been one that believes our children are the iron and chain links. That we are bound to a life of doom and gloom, that we and our children are suffering, that they are a burden to society. Have we become so selfish as a society that we would put less value on a child who has special needs? That their life is not worthy because they have a little extra genetic makeup? I know that we face many challenges ahead, but what family doesn't? Whose to say that I won't have more challenges in life with my "typical" child?

I find it a privilege that I am allowed to raise my two children.  I look at my daughter and son everyday and I know that I am blessed. I have learned more about life in these last three plus years than all my other years combined . You cannot see my thoughts or feel the emotions that come from my heart, but let me tell that it encompasses a very deep emotion within me. I can't imagine my children any other way, especially Katie having Down syndrome.  I like to think that she is the best parts of me and her dad put together.  I have never been more proud then to have her beside me as I navigate this life here on Earth.  .  

A word to any expectant mom or newly diagnosed family---love your child first.  Down syndrome is a part of your child, but is not all of your child.  You may have many thoughts and emotions in those first few days, weeks and months after you are told--"I think your child may have Down syndrome.....".   It won't seem like it at the time, but everything will work itself out.  You are not alone in this journey and everything you feel is normal.  Again, love your child first, all the rest will fall into place.   

Iris

This was a flower I started to post back in Jan 2012 regarding Iris, a beautiful little girl I asked you to pray for. The last post I wrote in 2011 had to do with 2 children who were having medical complications. One of the children being Iris, the other being Ethan. I never posted this picture. While looking at my blog last night, I saw this picture in my drafts folder. Nothing there except the picture and the name of the post. I wrote about them back in this post--Iris and Ethan. I am sad to report that Iris did pass away from complications related to heart surgery. Her moms still need our prayers. I will sometimes send a message to her mom via Facebook just to let her know I am thinking of her, that I love her, that I wish her daughter was still here with her. I really don't know what to say--to her, to Millie's dad, to Carly and Brad's mom, to Aziza's mom, to anyone who has lost a child. But they need to know that their child is not forgotten, nor will they ever be forgotten. It is a small consolation, if any at all, but I think people are so scared of what to say or what not to say, that they don't say anything at all. I am blessed to know these parents, to share with them the love they have for their child and the heartache of losing their child.

In the post that I wrote concerning Ethan. Good news did happen. He was adopted, but he has faced several medical setbacks and is currently in crisis now. Her mother still blogs and her words just pierce my heart. Her faith is amazing to be a part of. Please keep praying for Ethan. Miracles happen everyday.

Our group of friends within the Down syndrome community recently lost another precious child, Aziza. She was fine one day, got a stomach bug, went to the ER, had major surgery and passed away. It happened so suddenly. It tears our Ds community apart. I cannot explain the bond we share, but it is incredible when we come together. No, not every parent who has a child with Ds feels the need to be a part of a support group. We don't all share the same views. We find out that we aren't all compatible with each other. It's real life. It happens.

The shooting of innocent children in Newtown, CT this past December brought our nation to a standstill as we grieved the innocent lives of 20 children gunned down. I can't imagine the despair those parents felt. As a parent, and like so many others, I held my children closer and said I love you a hundred extra times.

To beautiful Iris and all the others.....may your light always shine on.

It is hard to believe that 2013 is here.

It doesn't seem possible that another year has passed, but it has.  I wrote a total of 2 posts for 2012, with both of those being posts that I wrote for our local Down syndrome support group and that I just cross posted on my blog for some promotion of the events we were hosting.  I didn't write a single post about any of us. Another sign to me that blogging really isn't for me, but maybe this will be my year.  I am reading blogs again (save for a few that I never stopped reading), and I decided to check on this blog.  Even though I haven't posted anything, I have people looking at this blog everyday.  The top posts are no surprise to me:  Gratitude and Blessings and Q is for Quotes.  I think that people who do get directed here may have googled one of those key words.  Maybe people want to be reminded of counting their own blessings.  Maybe they are looking for a quote.  Who knows?  It just seems to be very popular themes, so it is a reminder that I need to be writing down my blessing more often and sharing quotes too.  It seems that in the past few years, I have really slacked on my journals.  I journal about everything--lists of to do's, prayer books, quotes, musing of my everyday thoughts, etc.  Or I use to journal I should say. I miss it.  I want to re-connect with myself again.  So here I am.  We will see how this goes for 2013......

Our home computer is on the brink of extinction--it has been months since we have been able to get on and properly use it.  I can't get to sites, long delays in refreshing pages, etc.  It probably needs to be cleaned, but at the rate electronics are developing, its probably best to just buy a new one.  (this one is 3 years old)  I am debating on whether or not I need to just get a laptop versus a desktop.  I like them both for different reasons.  We have smart phones and an iPad to browse the Internet on and for the most part, use them about 90% of the time.  So, that being said, I am going to try to do my best with what I have until I can get something new.  Tonight is a good night as I am able to type without having to wait on the computer to catch up with my fingers on the keyboard. 

I will have to say that overall we have been doing well.  Katie and Blake both had great cardiology check-ups this past year.  Blake had a huge growth spurt in the past year.  It hasn't affected his heart and we hope that he will continue to do well.  A local chapter of Mended Little Hearts (cardiology support group which has chapters nationally) was started here in this area and I joined, but I have only been to the first meeting in the past year.  I hope to do better in the upcoming year.  I have yet to meet any parent that has multiple children with a heart defect.  Blake and Katie both have their pulmonary valve.  About 85% of children who have ToF usually get a prosthetic valve.  (that was the number given to me by one of our cardiologists--I haven't looked this up to confirm and it was several years ago that I received this information.)  Blake's echo that he had last month showed that he has moderate leakage from his valve.  It was stressed to both he and I at the doctor's visit that if he starts exhibiting any symptoms such as dizziness, heart skipping beats, etc, that we need to report those to the cardiologist.  Evidently if his pressure gets up to a certain point, he would have to have the valve replaced regardless if he had any symptoms and if he starts having symptoms they will have to do a MRI of his heart and cath to see if another surgery would be needed.  We know that there is a possibility that both of our children could have future heart surgery--it is nerve wracking to think of going through it again, but you do what you have to do. I was told that they are doing some of these procedures by cardiac cath in Europe right now, but are in clinical trials here.  It would be wonderful if they ever needed a new valve, that it could be done via a cath versus an OHS.  Blake played football again this year for school.  The conditioning is tough, but it really is good for him and we have the doctor's approval to let him play every year.  I have to admit that I have not seen him play at all in middle school.  I physically cannot do it.   I get upset thinking about him even playing and the last time I even talked about trying to go, I bawled my eyes out in front of the other person I was talking this over with. I don't know if he will even try to play in high school, but if he does, I will cross that bridge if and when it happens. 

Something that the cardiologist said surprised me.  He said that patients with congenital heart defects usually stay with their pediatric cardiologist their entire lives.  He said that some huge medical group just passed a ruling allowing a certification to be obtained by MD's to allow them to be certified in congenital defects.  Currently the rotation through pediatric cardiology is a short couple of weeks.  Kind of like a "hey, this is what we do with those type of patients kind of visit".  We have a ways to go before either child will be considered an adult, but it makes perfect sense that we would stay with a pediatric cardiologist forever.  I just thought that you would transition to an adult cardiologist at the appropriate time--same as switching from a pediatrician to an internal medicine doctor.  What the heck do I know?? 

Great news on the Infantile Spasms (seizures) front. We went for a check-up in November and Katie is off the seizure medicine completely!!! Yay!  We had gotten the go ahead to start tapering her if we wanted back in Feb 2012, but we told the neurologist that we would stay on her current dose.  Well, several months passed by with increasing difficulty in us giving Katie her medicine, so we decided to start weaning her.  By the time school started in Aug, she was only taking a dose every couple of days. She has done really well without the meds.  We go back to the neurologist in June to re-evaluate as long as she doesn't have any signs of seizures.  I don't think we have seen a huge change in her neurological status since being off the medications.  She tolerated he medication very well when she was on it and she seems like the same person off of it. 

I tend to write too much when I blog, so I will share more of what has been happening in some future posts.