Tuesday, October 30, 2012

Developmental Peds

Sophia had her check up yesterday with her developmental pediatrician at Riley Children's Hospital, and I'm happy to report that overall her doctor was very pleased!  We talked about some possible sleep issues and decided that another sleep study in the near future would be best, BOO!  We also discussed possible aspiration and since Sophia is taking everything by mouth now, we are going to schedule another swallow study to make sure that things are going down properly.  We discussed her recent eye and ear exams and I was informed that Sophia needs to continue to have her ears tested every 6 months for the time being.  We talked about nutrition and other opportunities to sneak calcium into her diet, since she isn't a big milk fan.  We also talked about the G-tube......and how Sophia's doctor is perfectly okay with it coming out, given things go okay with her swallow study and she continues to do so well!  I was pretty surprised that she was so quickly on board with it coming out, but from what I know about how well Sophia has been doing in the feeding department, I feel confident that it's the next step.  So we will get the swallow study done first, see what the results are, and go from there :)

As much as I have loved blogging this month, I'm so glad it's almost over!  Especially since our computer is down and out at the moment :/  I love the fact that blogging has helped me to educate people about Down syndrome, and the fact that our life with Down syndrome has not "suffered" but has been brighten in so many ways.  We are all faced with challenges in life, nothing is ever supposed to just be easy.  It's those challenges that make us who we are, they make us better.  Having Sophia in my life, I can say first hand that she has never been a "burden" to our family.  She doesn't hold us back as a family, but instead pushes us forward, to be better people and to see life, not just live it.  I could never imagine my life without Sophia.  I would live every bad day that we have had over and over and over again, if it meant spending more time with my sweet pea.  She makes all the hard work and struggles and fights worth it, every. single. time.  She is my daughter.  A part of me, one of the best parts of me.  She is my inspiration, my hero. 

Thank you all for following along with me this month, I appreciate your desire to learn more about Down syndrome and about differences in general.  I hope that Sophia has changed your heart and mind just like she did mine!  Wordless Wednesday tomorrow for my last post in October!

Monday, October 29, 2012

Have you learned anything?

Blogging every day is A LOT of work!  It's hard to find the time each and every day to sit down and think of something valuable to say and put it into words that hopefully people will read.  October is the only month where I commit myself to do this, because it's that important to me.  I spend most of my free time in October researching, writing, taking pictures and piecing it all together in the hopes that someone will learn something new about Down syndrome.  I don't have all the answers myself.  I learn new things about Down syndrome, and just about respecting other people's differences, all the time.  My hope in posting for Down syndrome awareness month, is that people realize that more than anything, it's ok to be different.  We all have different strengths and weaknesses and just because someone doesn't fit your definition of "normal", doesn't mean that they don't deserve the same respect that you would want as a human being. 

Sophia is one of the greatest gifts God has ever given to me.  She has taught me more than I could ever teach her.  She is exactly who she was meant to be.  She has a purpose in life.  She brings more smiles to my face and laughter to my voice then I could ever imagine.  She loves me for who I am, not for who she wants me to be.  She is full of life and carefree.  She has an innocence to her that I'm sure will stay with her for a very long time.  She is beautiful both on the inside and out.  She is non-judgemental.  She has a heart that is way too big for that little chest of hers.  She is a lover through and through.  She can forgive and forget and allows people second chances, even when they don't deserve them.  She is my angel here on earth.  She was purposefully made to change the minds and hearts of people who can't see past this false definition of perfect.

The Creed of Babies with Down Syndrome
My face may be different, but my feelings the same
I laugh and I cry and I take pride in my gains
I was sent here among you, to teach you to love
As God in the heavens, looks down from above
To Him I am no different, his love knows no bounds
It's those here among you, in cities and towns
That judge me by standards, that man has imparted
But this family I've chosen, will help me get started
For I'm one of the children, so special and few
That came here to learn, the same lessons as you
That love is acceptance, it comes from the heart
We all have the same purpose, though not from the start
The Lord gave me life, to love and embrace
And I'll do as you do, but at my own pace
- author unknown   

Sunday, October 28, 2012

Trick or Treat

We had such a busy weekend!  Friday night Jayden had her school's fall festival that we went to, and it was fun, but didn't go like I thought it would....typical.  It was cramped and crowded.  Jayden wondered around not really knowing what she wanted to do, just taking it all in I think, but leaving us walking around in circles while I'm trying to get her to pick a game.  Then we had Sophia, who automatically turns into a runner when put in any public setting.  She wanted to roam, through the crowd of people, touching, grabbing, swiping, dumping anything in her sight.  When we snatched her up, crazy Soph came out with her signature move of dropping to the ground and going limp, causing us to man handle her dead weight.  It's quite lovely and leaves a lasting impression on people I'm sure!  But we did leave the festival with a mother load of chocolate candy that I won through a raffle. Just what we need, more sugar to keep my kids all jacked up :/

Saturday started off early with Jaydens first basketball game of the season, where she made the first basket, AND scored two more baskets after that!  She was SO proud of herself, even did a little dance after one of the baskets (wish I had that on video!) , and we were super proud of her as well!  

Jayden's biggest, and smallest, fan :) 

That's our girl, the blur dribbling the ball :)

After basketball, the girls got flu shots.  Well Sophia got a shot, Jayden got the mist, but out of the 
two, Jayden was by far the biggest baby!  There is one perk to a child with some intensive medical history, she knows her way around a hospital, doctor's office and the getting poked, prodded, and shot routine.  She's a tropper, always :)

After our busy morning, we headed home to get ready for our Halloween party with our local Down 
syndrome play group, the Wabash Valley S.T.A.R.S.  Mario and Lugi had a good time.  Sophia 
mingled with some old friends and wrestled with a few newer ones :). It was a great time with a 
wonderful turn out!  Sophia even got to ride a pony, which she enjoyed very much! 

Then we made our way back up to Indy for a fun filled night with cousins and friends for another 
Halloween bash.  Any time the girls get to spend with cousins is fantastic!  We love them so much!!! 

I'm wrapping this up now because I'm about to throw this IPAD across the room trying to get this 
post ready to publish :/. Our desktop broke the other day and blogging on this thing is no fun!  Sorry 
for any duplicate pics or weird spaces or anything else that may appear out of place or funky.  Happy Sunday!   Enjoy the rest of the pics :) 

Saturday, October 27, 2012


Yesterday was Sophia's yearly check up with her cardiologist, and things look, and sound, GREAT!  We will plan on seeing her again in a year, and then possibly go to 18 month or 2 year visits after that!  

I can still remember the day, almost 3 years ago exactly, when I stepped foot in that office for a check up, pre open heart surgery, thinking that I would be told that we would be able to hold off until spring to do surgery and instead getting completely blindsided that surgery needed to be done in a matter of weeks not months.  I can still remember how my heart practically dropped out of my chest that day sitting in the doctors office.  I wasn't prepared to hear that news so soon.  I was scared, terrified actually, and everything I read or saw online scared me even more.  In 6 short weeks I was going to have to hand over my tiny baby to a man and let him cut open her tiny chest and pray that he did everything right to make my baby girl all better.  And if everything didn't go alright.......I didn't know what I would do.  This surgery was so much scarier than the first two surgeries Sophia had already went through, and the thought of losing her was more than I could imagine.  

I can still remember waiting in the waiting room for hourly updates from the rounding nurse and praying with all my might that whatever she had to say to us was good news, and it was.  Sophia's surgery went "perfect.". She spent 9 days in the hospital recovering and has had a healthy heart ever since.  I think about her heart surgeon from time to time and think how wonderful it must be to hold a "broken life" in your hands and then to be the one to fix it, is amazing.  I'm fully aware that he didn't fix my baby alone, God's hands were guiding his that day, and we are forever grateful! 

Passing time, and being silly, waiting to see the doc

Friday, October 26, 2012

Who's Hungry?

Eating and drinking are two things that I always took for granted.  I had no idea that so many children, and adults, are unable to eat and drink by mouth and require a feeding tube for numerous reasons.  When Sophia was born she had a blockage where her stomach and her intestines came together, called a duodenal atresia.  Because of this, she was unable to to eat or drink anything for the first 3-4 days because there would be no where for the food to go after it went into her belly.  Sophia also had a very poor suck and swallow, due to low tone, making it difficult for her to take anything by mouth.  Also because of her heart defect, Sophia tired easily and had very little interest in feeding.  Which is how we ended up with a feeding tube.

Tube feeding is a special liquid food mixture given through a tube in the stomach or small intestine.  It provides nutrition when you are not able to swallow or digest regular food.  Tube feeding can be either temporary or permanent.  Some people need tube feedings to prevent undernourishment while they are getting better.  Other people may need to have tube feedings for the rest of their lives.     

Some of the reasons why a baby or an adult may need to have a feeding tube are:
 * If they have a weak, or uncoordinated, sucking and swallowing pattern which cannot tolerate oral feedings.
* Some people have such severe respiratory or cardiac problems that they do not have the energy to suck and swallow.
* If a person aspirates, where you draw food or liquid into the lungs rather than into the esophagus.
* Lack of neurological coordination required to organize the collection and movement of food in the mouth, and to propel it to the back of the tongue and the pharynx for swallowing.
* Severe gastrointestinal difficulties.
* If a person is so ill that they are too sick to eat.

In order for someone to get the right amount of calories needed in a day, there are also different ways to feed. 
* A continuous feed: a small amount of formula is given without interruption over 12-24 hours.  When Sophia first came home from the hospital she was on a continuous feed for the most part.  She had such a hard time keeping her food down, and emptying her stomach fast enough, that we would have to feed her VERY slowly for 2 1/2 hours, then take her off the feeding pump for 1/2 hour to "rest", then we would start her feeding all over again for another 2 1/2 hours.  Let's just say that it was hard to do much of anything when she was feeding, all. the. time!
* A intermittent feeding: the total amount of formula needed in a day is divided into 3 to 6 feedings.  Each feeding is then given over 60 -90 minutes.  We slowly worked our way up to this, by adding a little more volume to each feed, as she tolerated it, and knocking off some time on the overall feed.  So we would work our way down from 2 1/2 hour feeds to maybe 2 hours and 15 minute feeds, then down to 2 hour feeds and so on, as Sophia tolerated the faster pace of formula going into her tummy.
* Bolus feeding: a large amount of formula is given by syringe in 15- 30 minutes.  It seemed like a miracle when we made it to Sophia tolerating a tube feeding in 30 minutes or less!  We were able to do so much more stuff, with her not being hooked up to a feeding pump for the majority of the day!

Tubes can be inserted in several places along the gastrointestinal tract.
* Nasogastric placement (NG tube): the tube is put through the nose and down into the stomach or small intestine.  This does not require surgery.  Many people find the tube uncomfortable, and it is easy to dislodge accidentally.  These tubes may be used when tube feeding is needed for only a short time, days or weeks.  This was the first type of tube that Sophia had.  I HATED it!  We had to place the tube down her nose, and check the placement of the tube before using it, by using a stethoscope.  Every week we had to pull the tube and replace it down the opposite nostril.  It was no fun for Randy, myself, and especially for Sophia I'm sure.   
* Percutaneous endoscopic gastrostomy (PEG or G tube): a small cut is made in the skin of the abdominal wall.  The feeding tube is placed in the stomach and a balloon or cap in the stomach hold the tube in place.  These tubes are placed when tube feeding is needed for months or more.  This is what Sophia has right now.  She had a PEG tube placed at 4 months old, when we realized that tube feedings were going to be a huge part of our lives for awhile, and we were done messing with the NG tube!  It's very simply to use and easy to replace, should the "button" happen to fall out.  You just simply place a new tube in the hole and fill up the balloon with water and it's that simply :)  Unless the tube comes out without you knowing and the surgical hole starts closing up, which it can do if it is left without anything in it for even an hour.  Then things get complicated :/
* Jejunostomy (J tube): the tube to be used for feeding is surgically placed in the middle section of the small intestine called the jejunum.  These tubes are placed when tube feeding is needed for a long time and can also be placed to help with excessive spitting up.  Sohia had a GJ tube (we could feed either into her stomach or small intestine) placed about 3 months after her PEG tube was put in, she was around 7 months old.  She was having a very difficult time keeping her feedings down and was spitting up just about everything that I was trying to put in her.  So we put a GJ tube in and instead of feeding her into her stomach, where she could spit all the feeding back up, we fed her into her jejunum, part of her small intestine, and it was almost impossible for her to spit up the feeding that way.  In turn, helping her gain weight and grow. 

Feeding has definitely been our biggest hurdle.  We have struggled with eating and drinking since day 1 and there were a lot of days when I just couldn't imagine Sophia ever eating or drinking by mouth.  It was the most frustrating thing we dealt with for the first 3 years.  BUT, we made it!!!  On May 23, 2012 I stopped Sophia's tube feedings all together.  We had been working HARD, with Sophia's speech therapist to get her to eat and eat more and more and more, and something just clicked I think.  I counted her calories and made sure that her weight was staying steady and we went for it.  She just took off each day eating a little more and a little more, and now she eats more than her big sister!  Some of her FAVORITE things are: bacon, chips (especially Doritos), McDonalds French Fries, goldfish, popcorn and ice cream.  Yeah, she's definitely a salty kind of girl :)  Of course she eats so much more than all of this, but these are some of her favs.  Drinking on the other hand took a little longer to come around, and it's still something that needs work.  Sophia will ONLY drink water.  No juice, no milk, nothing.  Just water.  Her intake of water though is getting better and better.  She is drinking more daily and I haven't had to use her feeding tube, not even to flush her with water to keep her hydrated, for the past two months!  Unless you have traveled down this road, you can't imagine how HUGE this is, but even typing this, it brings tears to my eyes to know that we conquered this, with so much help from many people, but Sophia is now an oral eater!!!!  Of course we aren't for sure when the tube will come out yet.  We actually have an appointment on Monday, October 29th with her Developmental Pediatrician to find out what she thinks about her progress and find out what the next step is.  We are so happy for the progress that Sophia has made, but now we had to lock up our pantry because we just can't keep her hungry butt out of it!!! :) 

This post was important to me to write because I never knew anything about feeding tubes before Miss Sophia.  (I must say, I've obviously led a very sheltered life with my lack of knowledge on a lot of things :/ but I'm learning!)  Anyway, I wasn't necessarily embarrased by the feeding tube, I mean heck, it saved Sophia's life by having it, but I hated to have to feed her out in public.  I hated the stares from people.  It made me feel like me feeding my baby was weird, but to me it wasn't weird, it was normal and just the way things were.  I know that people stared because they were curious and probably had no idea what or why I was doing what I was doing.  But the next time that you come across someone using a feeding tube, just know that there is a reason why they need to eat that way, and it's just another part of life.  Happy Eating :)

Thursday, October 25, 2012

Can I Get a Doctor?

**This post was originally written on October 25, 2012**

Although babies with Down syndrome can be just as healthy as any other child, they can also have an increased risk for a wide range of medical problems.  Even though some of these problems, like congenital heart defects, increased susceptibility to infection, respiratory problems, gastrointestinal disorders and childhood leukemia can be quite serious, the good news is that medical treatments have improved substantially and most of these health problems are now treatable, and the vast majority of babies with Down syndrome grow up healthy and active

Between 30 and 45 percent of babies with Down syndrome are born with heart defects.  These defects vary from mild defects which may disappear with time, to severe defects which will require major surgery.  The most common congenital (present at birth) heart defect is Atrioventricular (AV) spetal defect, which is what Sophia had.  This occurs when the valves separating the atrium (upper chamber of the heart) from the ventricle (lower chamber of the heart) leak allowing blood to flow in the wrong direction.  This problem is quite serious but can be corrected with surgery in infancy.  We found out about Sophia's heart defect right before her first surgery when she was only 2 days old.  We spent the next 6 months monitoring her heart and trying to fatten her up for preparation for open heart surgery.  At 6 months old, December 1, 2009, Sophia got a healthy heart!  She spent 9 days in the hospital recovering from surgery and was such a trooper through the whole thing.  Sophia now has a healthy heart and shouldn't have any future limitations because of the previous defect. 

**recovering from open heart surgery**

Children with Down syndrome are also at a higher risk to have thyroid problems as well.  Hypothyroidism being the most common type of thyroid problem both among the general population and children with Down syndrome.  Because of this higher risk, it is recommended that children with Down syndrome have their thyroid checked annually.  For the first year it was recommended that Sophia have her thyroid checked twice, every 6 months.  Then after that we were told to have it checked annually, which we do. 

The gastrointestinal (GI) tract, consists of the parts of the body that take in food, extract the nutrients, and dispose of waste.  Gastrointestinal problems tend to be more common in children with Down syndrome than in the general population.  One of the more common anatomical anomalies (the structure of the organs is abnormal) is a duodenal atresia, which is the narrowing of the small intestine causing the first part of the intestine where it connects to the stomach to be completely blocked off.  Since no food can pass from the stomach into the intestines, this condition must be treated immediately by surgically removing the blocked part of the intestine.  This is what initially sent us out of Terre Haute and up to Riley Children's Hospital the day after Sophia was born.  Two days after birth, on June 8, 2009, Sophia underwent her first surgery to repair her duodenal atresia.

**Sophia had to have her stomach emptied out by a tube before and after her duodenal atresia surgery.  Before because there was no where for her stomach bile to go since there was a blockage, and for a while after while the repair healed.**

The most common functional (the organs do not work the way they should) GI disorder is esophageal motility disorders and gastro-esophogeal reflux.  Children with Down syndrome often have problems with reflux.  Reflux does not mean that the child spits up during or after a feeding.  In most cases, this simply means the child has swallowed air.  Reflux can occur because the esophagus is having trouble propelling food into the stomach or it may occur because the stomach is emptying too slowly.  We struggled with this for a very long time when Sophia was a baby.  Her stomach was very slow to empty causing us to have to feed her very small amounts of formula, at a very slow pace; practically feeding her consecutively 24 hours a day in the very beginning.  In many cases the child will out grow the problem.

Children with Down syndrome are at risk for respiratory infections.  Some respiratory infections are caused by a weak cough, which is sometimes seen in children with hypotonia (low muscle tone.)  Other causes of respiratory infection are heart problems leading to fluid in the lungs, regurgitation of food from the stomach into the lungs (aspirating), and weakened immune systems.  Because of Sophia's heart defect she had problems with fluid getting into her lungs.  She was on medication to help prevent this, but because she needed a higher dosage, she landed herself back in the hospital right before she was about to turn 2 months old.  Sleep apnea, temporary stopping of breathing during sleep, is also sometimes seen in children with Down syndrome.  Sleep apnea is often caused by the adenoids or tonsils being too large for the size of the mouth.  Symptoms of sleep apnea include restlessness, noisy breathing, and snoring.  This can be a serious problem since the baby may have reduced oxygen levels to the brain.  Sophia was sent home from the hospital at 1 month old with a sleep apnea monitor and oxygen, due to her heart defect.  After a sucessful heart surgery, a sleep study was done and she was taken off the oxygen full time and no longer needed the monitor.  She continued to have a few more sleep studies, where they monitor body functions including; brain (EEG), eye movements (EOG), muscle activity, heart rhythm (ECG), respiratory air flow and respiratory effort indicators.  We later came to the conclusion that she would most likely benefit from having her tonsils and adenoids removed, which was done on November 3, 2011.

**The dreaded sleep study.  I mean really, who can get a good nights sleep like this?!?!?**

**Recovering from having her tonsils and adenoids removed.**

Close to 70 percent of children with Down syndrome will have some type of vision problem.  These problems include farsightedness, nearsightedness, strabismus (crossed eyes), amblyopia (lazy eye), astigmatism, cataracts, and blocked tear ducts.  All of these problems can be treated if detected early.  All children, not just children with Down syndrome, should have their eyes tested.  Sophia had her vision tested twice, every 6 months, for the first year, then it was recommended to have them tested annually.  Right now Sophia is a little farsighted, but is not in need of glasses at this time.  Everything else with her eyes appear to be good. 

A higher percentage of children with Down syndrome also tend to experience some type of hearing loss.  Hearing loss can be treated with antibiotics to treat infections, eustachian tubes to remove fluid from the inner ear, or, if necessary, hearing aids.  Again, with early detection, children with Down syndrome should be able to hear normally.  Sophia failed her first newborn hearing test, but was re-tested a few months later and passed.  Sophia has had her hearing checked about every 6 months from when she was born.  Overall her hearing appears to be ok, but will be monitored annually now to make sure that no problems arise. 

It is important to understand that any of these conditions can occur in any child, although they do tend to be more common in children with Down syndrome.  When you look up medical problems + Down syndrome, it can be a little overwhelming and even frightening.  You just have to remember to take one day at a time though.  All children get sick and no one is exempt from health problems.  As much stuff as we've went through with Sophia, it was all "fixable."  It was a hard road to travel, I'm not going to lie, but I would do anything to make my children better and the bottom line is, all of the rocky roads that we've had to travel down, have only made us stronger in the end.