Normal

This week was so crazy. It started last Wednesday with David having a fever after school. Trip to the doctor on Thursday confirmed strep throat. Home on antibiotic, fever gone on Friday, feeling great on Saturday, only to begin coughing on Sunday night. Tried school Monday morning, only to have to go pick him up before 11. The coughing got progressively worse throughout the day, despite breathing treatments, humidifier, decongestant, and everything else we could think of to do. Back to the doctor on Tuesday. She watched him for 10 minutes of having coughing spasms where he could barely catch a breath in between, his color would leave him, and he couldn't stop. Swabbed for flu and that came back positive. Then it was a whirlwind of arranging for him to be transported to the children's hospital so he could get suctioning & oxygen in the ambulance on the way.

When we arrived at the hospital, they determined that it was all upper airway crud that had to do with excess secretions and snot. They weren't worried about his lungs at all. David didn't even have to have an IV placed since he was tolerating all of his feeds and free water. The nurses taught us how to use the suction machine and pretty much let us handle it from there on. They were all great, but Michael & I are definitely the most confident at handling & caring for David, and I think the staff realized that. The next morning, the doctors concluded that they weren't really doing much for him besides providing the suction machine. So it was determined that we would go home with a script for our very own suction machine. LOL. What every family dreams of owning one day.

By late Wednesday afternoon we were home, where David continued to sleep for almost the entire next 2 days straight (partly because he didn't sleep for more than 10 minutes at the hospital). Last night, we got him out of bed to let him play and he was so thrilled. He didn't stop scooting around until we put him to bed. He still has a lingering cough, but is SO much better. We couldn't be more thrilled that it wasn't worse than it was.

Things can turn on a dime in this house. We're kind of prepared for that when David isn't feeling well. It had been 2 1/2 years since his last hospitalization. But we always know that it can happen. His ability to handle his secretions this past year has become somewhat of a problem. When he's well, he handles it ok, but when he's sick, it's just too much. Having something like a suction machine should help us help him in the future.

I wish this wasn't our kind of  'normal'. But it is. I think it is so normal to Kyle, that he wasn't even that concerned when David went to the hospital. He was just so excited to be able to have a sleepover at a friend's on a school night. It takes a lot of coordinating when you have one kid in the hospital over an hour away and another in 3rd grade just trying to keep up with school & friends. Luckily, everything worked out and we had a ton of offers for help. Those kind of friends are priceless. The amount of praying done on our behalf was phenomenal. While this was a quick hospital stay, I appreciate everyone who threw those prayers our way.

Today.......we are going to try to attempt more of a normal day. Getting David dressed will be one of those goals. We have to finish getting ready for the Christmas season. I need to clean my house and do some laundry. Everyday things that need to be accomplished to function in our day to day living.

So from our family to yours.......Merry Christmas! Here's to whatever your 'normal' may be!

Who Do You See?

Who do you see when you see this child?

 

A child that can't walk? A child that can't control his movement? A child that has severe mental disabilities along with all the physical ones as well?

I see all of that as well. I think about those things every single day. But I also see my child. My first born.

 

 

I see my husband's son. One of his joys & dearest loves in his life.

 

 

I see a big brother. A big influence in my youngest child's life.  Kyle doesn't even know it yet, but David is playing a huge role in shaping who he is becoming.

 

 

Trust me when I say we see his disabilities every day. But that's not all we see. We SEE his heart. We SEE his soul. We see David.

 

Who Do You See?



 

 





I'm Just a Mom

I often get the comment "I don't know how you do it."

I don't totally understand why. I do it because it was my choice to have children. In making that choice, I choose to take care of the children that I have.


I am just a mom to David.  The child who made me a mom. The kiddo who introduced me into the world of special needs. The kid who has great days and really tough days. The person who molded me into who I am right now at this very minute. A love of my life that I worry about daily. For his present life & future life. I worry about the cruel world we can sometimes live in and am thankful that he doesn't understand the impact of humans that can be unkind. I feel the hurt for him.

(Perhaps one day there WILL be a movie about him!)

 



I know that David is not perfect. Neither am I. He is just David and I am just his mom.



I am just a mom to Kyle.  The child who made me a mom for the second time. The kiddo that introduced me to the world of a typical needs child. A kid who has good days and really tough days. The first child of mine to ever utter the words "I love you" to me. A love of my life that I worry daily for. For his present life and his future life. I worry about the cruel world that we can sometimes live in and I can only hope that I can be enough of a role model for him to become one of the many kind humans we have in the world. He has & will always feel the hurt for his brother in the world. He said it best in the car the other day when he said "Being related to David will make us all better people."

I know that Kyle doesn't always make the best choices. He struggles daily with self-control. But I know his heart. I know it when it's happy and when it's hurting. He is a very normal 8 year old boy with special circumstances in his life that he can't always grasp. But I see glimpses of him grasping it daily. He is a boy trying to figure out where he belongs & one day he'll figure it out. I will help him find who he is. Because he is Kyle and I am just his mom.


Two very different boys. Yet at the same time, they have so many similarities. And I love them both very much.

Disappearing Summer

I can't believe that it's that time of summer already.

School registration has been completed for Kyle. The 3rd grader. Tear. I'm hoping for an awesome school year for him. It will be his last year at his elementary school before he heads to BRIJHS in Mansfield next year.  With a new-ish diagnosis of ADHD (the predominately inattentive kind), I'm a little nervous for him to enter a new school year with a new teacher. But fingers crossed and a positive attitude for both of us should carry us a long way. I am going to work really hard with him this year to be confident in what he's doing, so he can succeed. He is so excited to start school. School supplies have been bought and he seems to have gone with a red & black theme for folders, ruler, & headphones. He was a very enthusiastic school supply shopper this year!

While I was able to utilize online registration for Kyle (best thing EVER), I still have to register David in person since he goes to school out of district. I do that next week. In our district and also the district he attends in the town over from us.  He will be returning to the same class he's had for the past 5 years. Still at the Jr High level. The absolute right place for him.

But.......It's hard.  I was crying the other night thinking about it.  He should be a freshman in high school this year. Starting driver's ed. Thinking about homecoming. But he's not.  I've watched several of my friends talk about registering their freshman kiddos this year.  And it's so exciting for them.  I am truly excited for them. Especially to watch the girl that has watched Kyle for me a little the past two summers start high school. She is a month younger than David. And a great girl.

While I'm super excited for all of my friends' kids, I will always grieve the child that I dreamed of when I got pregnant with David. These big milestones, such as starting high school, always hit me hard. And even though David will start high school next year (I am TERRIFIED!), it won't be on the same level as your normal freshman year.

And while I may not have gotten the David from my dreams, I got this:

And this:

And this:







And I realize he is my dream. I just didn't know it. And he is exactly where he needs to be. And exactly who he needs to be. My real life hero.

Summer

Summer is in full swing around here. It's finally hot out. And I won't complain after the winter of hibernation here in central IL.

Both of the boys have settled into their summer routines. It took David a little longer establish a new summer schedule, but Kyle jumped right into trying to sleep until 10 am. I don't always let him, but he tries to each morning. I think it took me the longest to get into "summer mommy mode". But after almost leaving for work once without David, and not having lunch food for Kyle twice, I think I've finally got it down.

Of course keeping them busy during summer sometimes proves to be challenging. They come to work with me the days Michael is at work. Kyle normally brings along a book and at least one electronic device. David is either super cranky at the office with me, scooting all over the office floor, or like today-fast asleep. Because Mommy's work is boring. They normally last about 3-4 hours and do pretty well.

At home, I have figured out to keeping them happy equals giving them my time. David is usually pretty self-sufficient while playing in his room. He has his baskets of toys that he dumps out multiple times a day and I pick up multiple times a day. But self-sufficient and happy are different for him. I noticed when I'm in his room for him, smiles take over his face, and he truly loves just having some company in there with him. I'm so lucky he's so easy to please.

Then there's Kyle......LOL. Keeping him busy and happy during the day is proving to be much more difficult. He needs to be busy ALL of the time. I cannot give him my time 24 hours a day. I have laundry, dishes, and work. I know that he is 8, and should be figuring out how to fill his time-which he can do most of the time. But it is not always a choice that I think he needs to be doing. Television and video games should only make up a small part of the summer days. He needs help with figuring out other things. To him, my time not only equates to one on one time with him. Sometimes giving him my time really means planning or helping him choose activities to do on his own. Because as much as I want to give my all to him, I have his brother to tend to, a dog to tend to, a house to tend to, and work to tend to.  Sometimes I feel guilty because I know he doesn't have a typical sibling to play with or fight with (second part is totally ok with me!) So planning a play date or an activity for him helps him fill his time.

 

 

 

 

Time is one of the greatest gifts we've been given. Choose to what you do with your off-time wisely. It's what our kids are going to remember most.

 

Sorry

Today I was making small talk with a repair man at work. He had been there before when I've had the boys at work with me and was asking me a little about them. When I told him a little more about David, he replied with "I'm so sorry."  I replied back with "Please don't be sorry for us."

I truly don't want people to feel sorry for us.  While I didn't ask for a special needs child, this child was chosen for Michael & I to raise and love. I am absolutely NOT sorry that we had him at all. When I was pregnant with David, I had so many dreams. Those dreams didn't come true, but I have so many other dreams now.  Dreams of acceptance. Dreams of awareness. Dreams of loving all needs.

Occasionally I feel sorry for the things that we can't do. I feel badly for Kyle because there are things that we have had to skip out on because of accessibility issues. Or David having a bad day.  I wish I could change the way I feel, but I'm human and go through human emotions just like everyone else. And while I feel sorry for certain things, I do not feel sorry for who we are. Because we are us.

 

 I am lucky enough to be able to love my special needs child along with a much more typically developing child with his own struggles with ADHD.  Some days are really tough. Most days are really good. And some days are just in between. For both the boys.

The journey we're on has so many days that are unpredicted still. I can't wait to see what God has in store for us next.

You don't have to feel sorry for us. But I will always accept & appreciate prayers for us & these two kids.

Favorite Eight

This post will be a little different than my usual birthday post. Now that Kyle is 8 (yes 8!), I have the impression that a super mushy birthday blog post wasn't in order this year. Will it get a LITTLE mushy? Yup. But hopefully not the "Mom, you've embarrassed me terribly and I can't show my face around those who have read this" mushy.

So I've decided to compose a list of my 8 favorite things about my youngest child in honor of his 8th birthday.


1.  His heart. He loves unconditionally. He would probably still love me if I had posted a sappy blog about him turning older.

2.  His adoration towards animals. Maybe that goes along with the heart business, but I think someone who has such a love for animals shows such a great character.

3.  His eyes (and those lashes!). I swear that boy's eyes turned brown within hours after being born. They are so different from David's. Michael has brown eyes as well, but I think Kyle's may be even darker. And his lashes make ladies super jealous.

4.  His adventurousness. He is not afraid to try anything new. Four-wheeling, tree climbing, bike tricks.  You name it, he's willing to try it if he thinks it's something "cool". (Let me just note for the record, that he & I have completely different definitions of "cool". Some of the things he's willing to try freaks me out as a parent!)

5.  His love for the outdoors. He hates being stuck inside all winter. It's definitely not good for Kyle's ADHD side. Thank goodness we're seeing much nicer weather here lately! He's been out playing every single night since it's been warmer!

6.  His laugh. From day one, Kyle was a child you had to work to get a smile or a giggle from. So when he laughs, it's pretty darn genuine.

7.  His blankie. LOL. Don't tell him I wrote that. But I got the "blankie" for my baby shower for him, and he is still very much attached to that thing. Not sure when that will go away.

Aaaaannnnnnddddddd best for last!

8.  His love for his brother. This probably goes with #1, but this is a special bond. Most people don't see it, because when we're out doing other things with other people, Kyle has other things to do. When we're home, he really knows the things David likes & dislikes and has learned to read him as well as Michael & I. It's something that I don't think will ever be broken even as Kyle grows older & his interests change.


All in all, I'm excited about Kyle turning another year older. He always gives me a lot of firsts as a mom. But I don't think I'm near as excited as he is about turning 8!

After reading this Kyle wanted to add a list of his eight favorite things:

1.  Family

2.  Old fashioned cars

3.  Star Wars/Lego Star Wars

4.  Marvel/Lego Marvel

5.  Eating

6.  Vacation-South Carolina

7.  Briley (Grandpa & Grandma's puppy)

8.  School

Hands

Kyle & I were having this in depth discussion about hands this morning. Different shapes, sizes, finger/palm prints, capabilities. He was curious about hands today! So we took some pictures.

These are Kyle's very capable 7 (almost 8) year old hands. In the spring & summer he will have scratches from playing with sticks and dirty fingernails from digging in the dirt.  He uses them to write, play video games, brush his teeth, and so much more. As he grows, he will find more & more uses for these adorable hands. Amazing that these hands help define who he is.

 

 

Here are David's hands. 14 years old now. Not quite as capable as his brother's in the same categories. In fact, he will never write, never play video games, and never brush his own teeth. But they are still capable. David uses his hands to bring himself comfort. He has always been a thumb sucker. Those callused little thumbs show that. He can use those hands to bring things to his mouth to chew on. Or he just flat out chews on his fingers if there is nothing else to put in his mouth available. These hands also define David in a huge way. Those crooked pinkies are adorable! And thank goodness for great veins in these hands! It makes for easier needle sticking & poking for blood draws much easier. There are no denying who these hands belong to.



Kyle thinks it's so cool that their hands can be used so differently, yet still be capable of their own particular needs. Never thought to use our hands as a teaching moment, but it presented itself, so we went with it & learned a lot!



Love this song!

14

Every year I find myself writing the same things about you on your birthday. I just get to add another year. Today you turn 14. You've given us another year of loving you. It's so hard to believe that you are turning into a young little man. We've had our frustrations of your mind being like a 6 month old's stuck in this 14 year old body that's the size of a 9 year old's body. It's all quite confusing. To us & to you.

But it's ok. Because we'll love you no matter what you're going through. I will go through the frustrating days with you while we wait for a day filled with laughter & giggles. You never disappoint. You always come back to your happy disposition even after days, and a few times after weeks, of crying & biting out of frustration. I know that always comes from the lack of communication that you're able to give us. But you always come back to happy.

Those happy times have been some of the happiest days of my life. I love your smile. I love your laugh. I love the few times that you've found the coordination to actually squeeze me to give me a hug. I love all of you. From the moon, to the stars, to the heavens above. Always & forever, buddy.

I make a big deal about your birthday every year. Even though you have no idea what's going on. Since you can't shout it from the roof tops that you're another year older, I'll do it for you.


Happy 14th, David Webb! You are one of my biggest blessings on this earth.

 

 

My First Guest Blog :)

Yesterday's kick off to Feeding Tube Awareness Week 2014 was all about David's journey with his tube and how it helps to sustain his quality of life. These feeding tubes are definitely life saving devices we are lucky to have.  Many people live their lives with feeding tubes. Including many adults. I've asked a friend of mine through Facebook to share her story with us. She has fought her own battles, but has continued to do things to help us with David. She loves her family, her dogs, her Facebook "tubie kids", and God. She inspires me with her journey. So here it is.

Natalie,

Thanks for allowing me to share my story on your blog.  And, without further ado, this is my story:

People of all ages may require a feeding tube at some point in their life.  There are too many reasons to count that would cause someone to need one.  Some use them for feeding.  Others use them for "venting."  They can be long tubes fed through one's nose down into their biliopancreatic limb as a means of nutrition.  They can also look like a big tangling rubber contraption hanging out of one's stomach or lower intestines.  They can also look like a little rubber plug in one's stomach or lower intestines.

Hi, my name is Melissa.  I became an adult "tubie" in August 2007, at the age of 33, following gastric bypass surgery that resulted in complications. I awoke from an induced coma and found a percutaneous endoscopic gastrostomy (PEG) tube sticking out of my stomach and I was on total parenteral nutrition (TPN) through a catheter.  The PEG was being used to drain bile from my remnant stomach which had become temporarily (we hoped) paralyzed.  I had developed two not-so-lovely ulcers in my newly created gastric pouch which left me unable to eat by mouth.  Being diabetic, I was given TPN to feed my body and continued insulin to regulate my blood sugar. I was hospitalized for five weeks before being discharged with home visiting nurse care.

Slowly over the next three months, my stomach began to wake up and the surgeon removed the PEG tube in his office.  Things resumed somewhat normally until March 2011 when I developed a grapefruit sized cyst in my right ovary which needed to be removed before it twisted and cut off blood supply.  Recovering from the oophorectomy, I became more and more nauseous and could keep nothing down.  We thought I may have adhesions (scar tissue) causing problems.  

I had surgery again in July 2011 to remove all abdominal adhesions.  Things seemed fine until I was placed on a clear liquid diet.  Again, sever nausea and vomiting.  I was rushed to radiology and the images showed that my stomach was so distended that the surgeon feared it would perforate.  It was paralyzed yet again.  The surgeon ordered an Interventional Radiologist to place another PEG tube.  Because of the gastric bypass surgery, my anatomy has been altered making it complicated to reach my stomach. Nonetheless, the PEG was in and all the contents drained out.

As time went on, we realized my stomach was not waking up.  I had several tests performed to where barium was fed through my PEG and I was tilted on a cold table back and forth and almost upside down trying to get the barium to empty my stomach to no avail.  I finally received the diagnosis of Severe Gastroparesis. 

To be honest, I have been exhibiting signs of Mitochondrial Disease (Mito) from the age of 20 when I was hospitalized with a perforated bowel due to Diverticulitis.  I was told then that "Diverticulitis couldn't be possible (despite a pathologist's report) because that is a disease for geriatric patients--not young people."  But hey, I was told it wasn't possible to have gastroparesis either because I had gastric bypass surgery.  But I do.  I have both diseases and they along with other side effects I have, read right out of the textbook for Mito. I have exhibited progressive gastrointestinal dysmotility, satiety, nausea, dysphagia (trouble swallowing food), gastroesophageal reflux, abdominal pain/distention, neuropathy leading into parethesias (tingling, numbness, and pain), symmetric and distal weakness. I've been told by one gastroenterologist that Mito is "rare."  Sadly, it is NOT rare. And, it's not just a childhood disease.

Since the placement of the PEG in 2011, I have switched over to a feeding tube button like my friend, David Watkins.  It is much more convenient for me and is less likely to get caught in my clothes, zippers, drawers, and door knobs.

Spread feeding tube awareness and always be your own advocate for better health. You cannot change what disease or syndrome is thrown your way, but you can control how you react to it.  Become a champion by learning all you can about it.  Sometimes, you may actually be educating hospital staff on how to better take care of you or a loved one.

Much love and blessings, Melissa

 

Feeding Tube Awareness Week

Today marks the first day of Feeding Tube Awareness Week 2014.  While there are so MANY reasons why people have feeding tubes (and so many different types of tubes), I wanted to begin with David's personal journey about his GTube.

I have to admit, I wasn't familiar at all with what a GTube was until about 8 months before David got his. I knew they existed, but never took the time to understand what they were or, more importantly, why they were used.

David's journey started just over 5 years ago in November of 2008.  He went in for a swallow study (a test where you are given barium to drink then they are able to watch your swallowing on an X-Ray type machine) that we suspected would be bad, but didn't expect it to be AWFUL. He showed silent aspiration (food going into the lungs, or more frequently known as "going down the wrong pipe") on every single consistency of food/liquid we attempted. As humans, we all occasionally aspirate. But most of the time, there is a choking or coughing spell that goes along with that. David had NO sign that was happening to him. This is probably why David was continually ill with pneumonia or other respiratory illness.

The speech therapist that performed the study, immediately pushed us into David getting a feeding tube ASAP. We were scared and weren't ready to jump into major surgery until we figured out if there were other options for David. Our pediatrician was kind enough to go over some other options with us and for the next 7 months we tried different ways to feed David, including pureeing ALL of his meals into a smooth, fine consistency and thickening all liquids until they could be spoon fed to him. Unfortunately, he continued to get sick. Not as much with pneumonia, but other respiratory problems were present.

On July 3, 2009, our pediatrician said she thought we gave it a good effort, but she thought it was time to proceed with a feeding tube placement for David's nutrition. After that, it was a whirlwind of meeting with the surgeon, finding a new GI, and scheduling pre-op appointments. Surgery was scheduled for August 4, 2009.

That day came so quickly. We were so nervous. The surgery lasted for about 4 hours. When he was finished, the surgeon said he did well. She had placed a PEG tube at first (a long tube we had to keep taped down while not in use so it didn't get pulled out) but informed us that he would be getting a "button" 8-12 weeks post-op. 

This surgery was supposed to be fairly uneventful. Of course, that's not how David thought it should go. After a set of collapsed lungs that sent him to the PICU for 2 days and a horrible reaction to the anesthesia, our supposed 2 day stay turned into and 8 day stay. But then we were finally allowed to start our journey at home. At first, I let Michael handle all the ins and outs of the tube. I was horribly intimidated by it. But knowing Michael had to eventually go back to work forced me to jump in and learn the process. What I found was......it was so easy! And I was so relieved to be able to have a safe way to feed my child.

About 4 weeks after the PEG tube placement, Michael was getting David ready for a bath. I was in the kitchen & I was hoping that what I'd heard Michael yell from the bathroom was that David's tooth fell out. I was praying he didn't say tube! But he had. We had been warned that with a new placement, that we only had about an hour before the hole closed up. It was panic mode at our house, grabbing the "button" the hospital sent home with us, finding a neighbor to drop Kyle off too, and heading to the nearest ER. Once there, it was apparent this wasn't something that the ER doctors were very experienced in doing. They tried to keep us waiting FOREVER while we panicked about his nutritional source closing up before our eyes.  After Michael pretty much threatened to place it himself right there in the waiting room did they finally take us seriously.  Using the directions from the Mic-Key button box, the ER doc was able to place the button and then we had to have an X-Ray done with contrast to check to make sure it was place properly. Thankfully, it was.

After all of that. we visited the surgery nurse the next week and received proper training about placement of the button and care for it.  The button needs to be changed out every 3 months at home, and we weren't aware of that.

Fast forward 4 1/2 years later.  Michael and I have become pros at this Gtube thing. We can feed him his formula one handed at this point.  He is able to eat every 3 hours during the day time, through gravity bolus feeds with a syringe.  We change his button with ease in the comfort of our own home. Kyle learned how to change the button himself. He can also feed David, although it's not something he's done frequently.

At times, I wish I had known how easy it would be after those initial few weeks. I think I may have considered it immediately after the swallow study. But I know in my heart, I also would've regretted not trying other feeding methods before the surgery. In the end it all worked. I'm happy to say that David has gone from having respiratory illness every month to much longer stretches between doctor visits. We had to take him in on Christmas Eve and our doctor came in shocked that we hadn't been there since APRIL......longest stretch EVER so far.

While there are some things that aren't so great with the tube (granulation tissue, leakage, etc.) we have figured much of that out & can often combat it at home before things get out of hand.  But the best thing about the tube? 100%- The quality of life it has given to David that I didn't even realize was possible 5 years ago. It makes it all worth it.