Jingle Bells

I'm sitting here trying to think of things I want to write. There are a lot of things going on at this time of year and it is so hard to try to touch on everything.
Thanksgiving has come and gone and the Christmas season is in full swing. Tree up, decorations up, lights are lit up, and the Christmas scented candles are burning. My shopping is pretty much complete and the presents are pretty much all wrapped except for the few stragglers I've been waiting to get here from my online shopping.
Christmas family traditions are important to me. When I was a kid, me, Mandy, and Jessi would always pretend we were asleep when my parents would come in to check on us. This was after we were old enough to know that they were really Santa. As soon as we could, we were up and sneaking peaks at what they had filled our stockings with. They made us stay in bed until 6 am. We could then get them up to go open presents. I'm pretty sure Nicole was too mature for all of this excitement. I believe that she and my parents would have rather had their beauty rest rather than wake that early to open gifts when in all actuality, they would still be there if we had waited another 2 hours! But we couldn't wait. The excitement was too much for us.
Now that I am married with children of my own, our traditions have changed slightly. But I am trying my hardest to make sure that they are the same each year. David doesn't really understand or actually care all that much. Kyle is five now though. He is understanding that Christmas is about giving and receiving gifts now. And spending time with family. And this year, we are actually reading the story of Jesus' birth to him. I definitely want him to know that this is what it's REALLY all about.
The excitement of seeing their little faces on Christmas morning still gets to me. I still have a hard time sleeping in on that morning. Unfortunately, Michael, David, and Kyle are all a lot like my parents and Nicole were on Christmas morning when I was a kid. They would rather sleep in! So this year, while they are all asleep and I'm not, I guess I will just wait in anticipation for their arrival around the tree!
I'm sure this will be my last post until after Christmas and possibly the New Year. For the rest of the year, I will be focusing on the people in my life who mean the most. And creating and maintaining all the family traditions I want to carry on for my kids. So, from my family to yours, have a wonderful Christmas season!

Living Life

Cold and flu season is among us now. This is always a terrifying time with a child who has a weakened immune system in our house. David got hit mid-October with a yucky respiratory thing that had him out of school for about a week. Luckily, he is doing much better now and we're hoping for the rest of the fall season to be a quiet one for him.

Unfortunately, Kyle was hit EXTREMELY hard with a flu virus that had him out of school for more than a week and landed him 3 trips to the ER and one overnight stay in the hospital. He was in so much pain that he was curled up in a ball screaming about how much it hurt. It was heartbreaking. I don't know what to do when this one is sick. At all. With David, I can almost predict what will happen next and I know how to comfort him when he is down and out. I had absolutely no ideas with Kyle. I felt terrible. Luckily, after 2 CT scans, 2 sets of x-rays, and plenty of bloodwork later, they determined that the flu bug pretty much just got stuck in his intestines and needed to find it's way out. He is feeling much better now. While he was in the hospital though, they were hearing an irregular heartbeat and had an EKG performed. It came back abnormal, so earlier this week, we took a trip to have an echocardiogram done on him. We don't have the results yet, but I am praying that everything is ok and it all stemmed from his illness. Cross your fingers for us.

After all the sickness we have had in October, I am ready for an ill-free holiday season. I am much closer to being done with my Christmas shopping than I was at this time last year. I will be heading to Indy this weekend with my mom and most of my sisters for our yearly Christmas shopping extravaganza, which always proves to be a good time! Michael, Kyle, and David are hanging out here for a boys' weekend in. I'm sure lots of Netflix will be watched. 

I've been thinking about how close we are to Thanksgiving already. I just want to say that I am extremely thankful for all the people in our lives. I love all of my family dearly and I have realized just what great friendships I have made in the past few years here in our little town. I really am blessed in life. Thank you for being a part of it :)

October is Disability Awareness Month

I just wanted to say that October is Disability Awareness Month. Here are some things that you could do to spread awareness about disabilities:

♥ Start a Conversation ♥ Read a book to a group of children that emphasizes difference and fosters acceptance ♥ Share a personal story ♥ Pass on information about a disability ♥ Acceptance begins with a Smile : )

My friend's 8 year old son used to be unsure around David. Now that he's around him on a regular basis, I think his awareness level has heightened. Kelly called me a few days ago to tell me that her son has started playing ball with the 2 wheelchair bound kids in his school and she wanted to thank me for allowing my child to touch her child's life. It felt good to know that David is helping spread awareness just by being him :)

Remember that if children are made aware early in life, they will be better people later in life!

My Little Sumo Wrestler

David was pretty sick yesterday and this morning. It's just an upper respiratory thing, but when David gets sick with something like that, it's terrible. He can't breathe well, and the coughing is horrendous. I took him to the doctor yesterday morning and she prescribed three new medicines and doubled another one of them. Last night was extremely hard for him. He was up all night battling what was going on in his chest. I couldn't keep anything in him. When he got up this morning, he was sounding pretty rough, but after getting his medicines down him, he was like a new kid in a few short hours. Still congested, but nothing like it was. Thank goodness!

I'm pretty sure we were paying for the past six months. That is how long it's been since we've had to take David into the doctor for an illness. SIX MONTHS!!! That's like a new record for us. I really should be thankful for such a healthy six months. When the doctor came in to see him, she could not believe how much he had grown. He is up to 57 pounds now. Three years ago, David barely weighed 30 pounds at 8 years old and now he's up to 57. It's amazing what can happen when you find out your child has a thyroid problem!

I think Michael and I have known that David weighed a little more. But now that it's actually been confirmed that he weighs that much, I think I'm noticing it even more. Now that I know, it feels like I'm picking up a ton of bricks. I'm sure he's no heavier than he was yesterday when I was picking him up. In fact I know he isn't after not eating and not keeping much down last night. But that knowledge is now in the back of my head and is playing mental games with me.

As long as he remains my little cuddly and lovable guy, he's allowed to gain as much as he wants. I know that Kyle has almost outgrown that stage already and he's only 5. But David better always remain my snuggle bug.

Can We Really Have It All?

This week has been busy. I mean B-U-S-Y. But it was fun. We were in Lincoln the last two weekends to celebrate the union of a marriage one weekend and a soon to be nephew in Michael's family yesterday. It's been a long week for all of us, but a great one.

When Michael and I got married almost 14 years ago, I had certain images in my head on what our lives would be like from then on out. When I got pregnant with David I also had certain images of what my life would be like with a family. My life is so different from the images that I had so long ago. If I had known that I would have a child with severe disabilities before I had him, I would have thought that my life was over. If I had known that we would sometimes struggle with money, life, and patience- again- I would have thought my life was over.

But it's not over. It's wonderful. No, we can't have it all. But we can take what we've been given and go with it. Learn new things. Meet new people. And love every minute of it.

And I hope that when Kyle wakes up Christmas morning and learns that Santa didn't bring him that parrot he asked me for this morning, that he will learn just what I have written. That you may not get what you asked for, but Santa (or God in our case), just might have given you something better. Maybe it was something that you really needed........

School Days

I officially have two children in school all day, every day. It makes me a little bit sad. It is the first time in 11 years that I haven't had someone to take care of during the day.
Kyle started kindergarten last Thursday. He did really well. Friday was his first full day of school and he already had one of his "colors" taken away for talking. Surprise surprise :) He doesn't know many kids in his class, which is probably a blessing right now. It will give him a chance to learn the rules and what is expected of him in kindergarten without having any distractions from kids he already knows. Kyle tends to be a show off when there are a lot of kids around that he is familiar with. I think the structure of a classroom will be wonderful for him. He enjoys learning and is proud of himself when he can accomplish new things. The downside for Kyle is if he can't do something. He tends to get extremely frustrated with himself and has a hard time expressing how he feels. Right now, the most he has talked about is his recess time!
David started back to school yesterday. For those that don't know, David has attended school in a different district than we are in. He has been in that district for 5 years now and is in his second school there (Jr. High!). He adores it. He has a one on one aide and this year there are only three kids in his class which I hope makes for a lot of individual attention for all three of them. He loves to be social and integrated with the rest of the school. We have been really blessed with the people that have touched our lives through David. He gets all of his services at school and is very well taken care of.
For me, all this free time is a little foreign. Michael has been off this week and goes back to work on Friday. So it will probably really hit me then. I will miss the conversations that I have with Kyle. One never knows what we will be talking about on an hour to hour basis. I will miss David needing me. I feel good when I am needed by him.  I won't miss taking Kyle to work with me and having him be hungry, thirsty, or bored every time Spongebob goes on commercial. I'm pretty sure I won't miss taking David there with me either. He is an angel there 99% of the time, but the flight of stairs that I have to carry him up to the office seems miles long while he's in my arms. I'm glad that my children are both in environments that are helping them learn. They are on different paths in life, but are both acquiring valuable lessons. Having both boys in school is also helping me learn to appreciate the "me" time in my life now. I am hoping to acquire valuable lessons myself.
So here's to a great school year with a lot of learning for all involved!

Times Like These

Today on the way home from Champaign I heard David laughing hysterically in the back seat. When I looked, I saw Kyle waving David's arm up and down against the arm on his booster seat. I THOUGHT Kyle was playing with David. Instead Kyle was upset that David was laughing and not crying. He was actually trying to hurt David! Now, I know that seems wrong. It IS wrong. But it is something that brothers actually do. He told us David was swinging his arms around and hit him in the head and it hurt him. So I guess he was trying to get him back and because of David's extreme tolerance to pain, David thought he was playing with him and thought it was funny.

Michael just told Kyle that David doesn't understand these kinds of things. That's when the waterworks started. Kyle let loose, wailing "BUT I WAAANNNNNNTTTTTT HIM TO UNDERSTAND!" The next words were "AND I DIDN'T WANT GOD TO MAKE HIM DIFFERENT!" It was heartbreaking. How do you find the words at times like these to explain to a 5 year old that sometimes life is just HARD? And we can't control what is being thrown at us?

Most of the time Kyle just goes with the flow. We try to get him involved in activities with other kids and he just started soccer. By no means is he lacking in that department. In fact, sometimes I think I try to do too much with him just because I don't want him to feel like he can't do things because of his brother. But the fact of the matter is that sometimes we can't do things because of David. We really wanted to go to Ruby Falls one year on our drive home from SC, but they weren't handicap accessible. We can't go on a bike ride as a family because of David. We aren't able to just hop in the car and be footloose and fancy free because of David. Those are just a few of the things we just CAN'T do. But there are plenty of things we CAN do as well. Until today, I never realized that Kyle really understood the severity of David's disabilities. It makes me sad.

After about 10 minutes of being upset, Kyle was fine. He didn't bring it up again at all. So we'll just leave it alone for now. As he gets older, he'll have more questions that we probably won't have an answer to. Right now, I'm just going to think of our conversation from the other day. Kyle said to me- "You know that David is really special, right?" Of course I told him yes. Then he said- "You know that I'm pretty special too, right? You know why? Cause I can run really fast." I'm so glad that he knows that they are both VERY special little boys!

Years of Progress

Today we had the blessing of getting together with a family that I have been communicating with through Facebook. They have a daughter who just turned one that has joined the "diagnosis train". We were on this train for so many years before we took a break.
When I met their little girl, it brought back so many memories of when David was that small. It's amazing how many of the same mannerisms and characteristics they share from when David was around the same age. While there are also differences in some of their symptoms, it still took me back to a place that somehow got buried in my memory.
At one, David weighed only about 15 pounds and had no trunk or head control. He absolutely could not sit up yet. He had no means of "transportation" for himself. But he was happy and loving all the same. After seeing their little girl today I realized how much progress David has actually made over the years. He is now 11 and 55 pounds. He has head and trunk control when he wants to (he's a stubborn little thing), he sits up when he wants to and he can get out of a sitting position, and he definitely moves freely about the house by means of scooting on his back. This is A LOT of stuff for a kid that does not have good control over his body. I am so proud of him when I think back to all the things he has accomplished over the years.
I thoroughly enjoyed visiting with a family that is going through some of the processes that we went through. No matter how close to a situation you are, if you haven't lived it, it's hard to picture. This family sees some of the same pictures we have. I appreciate them sharing their family with us. It made me happy to remember where David started and where he is now. I hope seeing David helped them envision that life with special needs is so special and rewarding and that progress is possible in the smallest increments for their child.

Questions & Possibilities

We had a visit with David's gastrointerologist yesterday morning. We only have to see him once a year, which is nice. We started seeing him because we needed someone to monitor David's feeds and his gtube site for us. We feel like this doctor is one who tries his best to look after David's best interests.
I was nervous going into this appointment. I knew that we'd been having some digestive issues for a few months now with David. His throwing up has gotten worse rather than better. I knew that we could come out of this appointment with news that was less than favorable. But I still tried to be optimistic.
We went in and explained the situation. He is almost sure that David's reflux has gotten worse. Which could mean that he's on the road to surgery to correct it eventually. We would have to run some tests and monitor his condition over the months to come to make this decision. I already told him that I would NOT be repeating the pH probe that was so unsuccessful 2 years ago. He understood after what we'd been through with that particular test. To make a long story short, the pH probe has to be done while hospitalized and involves a tube being placed in the nose and down the throat. It sits at the top of the stomach. We battled getting the probe into place with David. After about 10 of 24 hours, it all ended with David throwing the probe up and it was hanging out of his mouth. The nurse had only seen it one other time in her 18 years of doing it. My child is sooooooo talented.
Anyway-that is one of the two possible issues. The next one's solution is the most bizarre to me. David could possibly have a stomach emptying issue. The way to test for this is actually an easy one. They would just have to observe David with one of his feedings and watch it by putting a radioactive dye in with the feed. If that's the case, he could be simply throwing up because we're stuffing him too much. One way to fix this on some children is to put them on a slow drip to feed overnight. This is not an option for David. He does not sleep well at night and that could be a huge hazard for him.
So what could the other option be????? Well, the answer would be botox. Yes, botox. He would be put out every 2-3 months to have botox injected internally into his stomach. This is relatively new, but they are having success with it. I guess it allows the stomach to digest the contents much more quickly. The reason I don't like this is because David does not do well with anesthsia. It makes him super sick and to have to have this done every 2-3 months would take it's toll on him, myself, and Michael.
The good news we gained from this appointment is that while David has been throwing up much more, he hasn't developed pneumonia recently. And his weight is up along with his BMI from last year. He is beginning to follow a much more healthy curve. Not the curve of an 11 year old, but a curve none the less. So the GI doc wants to wait on anything right now. David is doing so well clinically that he would hate to rock the boat. Instead we will be keeping in touch on a quarterly basis with the office to let them know where David stands. I am happy with that news.
So until we know more, I will just continue to enjoy the rest of the summer with my boys. Pretty soon I will have a little bit of "empty nest" syndrome since Kyle will be flying the coop into kindergarten. Hopefully we can wait on any procedures to be done until next summer. That is my wish. In the meantime, if we see you somewhere and my kid tosses his cookies (through no fault of his own) I apologize in advance :)

Vacation Time

We recently arrived home from our yearly vacation to South Carolina. It's a long drive with the boys, but they are both really well behaved in the car. Kyle usually watches movies or plays with his animals and David gazes out the window for long periods of time, which is what seems to be causing his car sickness issue for the last several long trips. Let's just say that we travel with a lot of clean towels and when we arrive, we have lots of dirty ones!
Kyle was super excited to go this year because we were overlapping 3 days there with my parents. The last time we did this, Kyle was 1 and doesn't remember. Kyle was Grandpa's best buddy while they were there and we went to the pool or beach with them everyday. My dad even watched the boys while Michael, myself, and my mom all enjoyed a wonderful dinner at the Melting Pot in Savannah. That made me a little nervous since I'm pretty sure my dad hasn't changed many diapers in a VERY long time-especially not an 11 year old's! But he did a wonderful job and we had a great time out without the boys, which is a rare occurence.
When my parents left, friends of ours who live in the same town as my parent's home arrived back in town and we got to spend some fun time hanging out with them. It's always fun to visit with old friends and we try to see them every year!
I think this was the most laid back vacation we've had yet and it was wonderful. The boys were both well behaved (although David had an extremely hard time getting used to not being at home and had a difficult time sleeping) and we enjoyed just hanging out at the pool with them. Kyle is SO close to learning how to swim without his water wings on and was even doing somersaults underwater without any help! David LOVES the zero entry pool since it allows us to just sit and splash rather than fight him in higher waters. Michael and I took turns hanging out with the boys in the different sections of the pool so we can enjoy equal time with both of them. They are both growing up so quickly, especially Kyle. He has learned so much in the past year and matured a lot. He loves his independence!
While I was sad to leave, I was happy to arrive home. To have my whole family (the 2 dogs included) get back into a routine was so nice. And it's always better sleeping in your own bed! So until next year when we go back to SC, I will  treasure the memories we made this year!
And for those who heard the alligator story-we did not bring him home as much as Kyle would have liked to!!!

Loving David

We have had a really rough week this week with David. He started a new medication a couple of weeks ago that is doing what it's supposed to do, but has caused him some pretty severe digestive issues. So we've been doing some things to correct that issue. I think we're starting to get on the right path. Have I thoroughly enjoyed my week? Not really. Am I disappointed in David for having this problem? No. It is who he is......
This morning I was watching the Today Show. They did a segment on a mother who wrote an article for Redbook about how she has never liked her child because she didn't meet the mother's "expectations". She wasn't meeting any of the typical milestones that children typically meet. She didn't eat or sleep well. She was "different".  She had a second daughter and said that she finally knew what it felt like to love like a mother loves. Her daughter finally got a diagnosis at the age of 7 of some kind of growth hormone deficiency that caused her to be developmentally delayed. It was then that the mother finally accepted her daughter for who she is. She said she felt like instead of it being her against her daughter it became her and her daughter against the disease. It taught her to be "patient".
I have a problem with this because so many children/adults will go through their lives without a diagnosis for something they face everyday. David is one of those people. He is 11 and doesn't have a specific diangosis to what doctors believe is a chromosomal issue for his severe delays. I certainly never loved him any less for that. I'm not waiting for the day to love him more because he has a diagnosis. I'm not sure that day will ever come for us, but if it did, I'd love him the same as I do now. I do get frustrated with our situation sometimes. I'm not perfect. But I love and appreciate my children for who they are. I love David and Kyle for all of their flaws. And Kyle has just as many as David. Especially when he wakes up on the wrong side of the bed like he has this morning :)
So I guess what I'm trying to say is to love your kids for who they are and not what they can do. Get frustrated or angry with them when they do things that aren't right. But never stop loving them. They can't help "who" they are.

What A Weekend!

My weekend has been particularly interesting. It started on Friday and I was watching my niece, Kendyl, for the day. Our plan was to go to playgroup and then drive the 45 minutes to Lincoln to deliver a meal that I had made my sister, who's been ill. Unfortunately, David had other plans.
I received a call from his teacher around 9 saying they thought he had a fever. Thank goodness that we hadn't made it to playgroup yet! I can only imagine dragging a 5 and 3 year old out kicking and screaming once we were there. Soooo, with some bribery of Dairy Queen, they agreed to come with me to pick David up from school. We ran home, switched vans (David's car seat is in our new van), and headed to Clinton. Once there, they brought David down & it was pretty apparent that he wasn't feeling well. I felt his head, but it didn't feel very warm to me, but their forehead thermometer was reading 101.5. This is concerning to me since David isn't a child who typically runs a fever AND he was already on antibiotics. So I got him all loaded in the new van and got his wheelchair into the back. I noticed that he was making some funny faces, which is a sign that he might throw up. This is a pretty normal occurence for him when he's congested. So I went back around to get the towel off the back of his wheelchair. While back there, I could see that Kendyl's baby was on the ground between her and David's seats. I told her to pick it up in case David got sick. The response I got was one I didn't want to hear-he already did. I ran back around and low and behold he did. All over himself, his car seat, and my new van. I suppose he felt the need to "christen" it. It wouldn't be our van if David hadn't thrown up in it I guess. I got him semi-cleaned up and I'll be darned if he wasn't laughing about it! He must've felt better! So I decided to make the trip into Lincoln to deliver the food and along the way, David cat-napped and then was laughing and having a grand old time. Once we got home (of course after I had to stop at Dairy Queen for Kendyl and Kyle), I checked his temp under his arm and was relieved to see it was only 97.5. A HUGE relief for me. After cleaning and airing out the van, the day went on fairly event-free. Kyle got to go planting that night while Michael & I hung out and watched a movie with David.
Saturday started out pretty well. David was still a little snotty, but in a great mood, so I took the boys and hit up Old Navy's $1 flip flop sale. We came home and hung out for a while. Then my friend Kelly & I swapped children. She took Kyle and James to the movies while I kept her daughter Violet. For those who read Kelly's posts about Violet, I'll have you know she is wonderful here! Last night I decided that she was looking a little tired so I thought she might want to go out and play for a little bit. We hit the front porch and she ran right to the wagon to sit in it. I took a seat on the front porch swing and promptly fell through it. That's right, not OFF of it, but THROUGH it. The seat fell right out from under me. Somewhere along the way I hit my eye on something and am sporting my first ever black eye. It's pretty cool. I look like a boxer.
So today we are staying home. And off of any outdoor furniture, just in case.
If you can't laugh at yourself, you can only be angry about things. So I just choose to laugh!

Kyle's 5!

Five years ago today at 12:46 pm, Michael and I were blessed with the arrival of our youngest, Kyle Matthew. Weighing in at 7 pounds 3 ounces and 21 inches long, he was so much bigger than his brother was at birth. He was also full of attitude the minute he arrived!
Through the years, we have seen Kyle develop his own distinct personality. He is SUPER stubborn, and can be quite defiant at times (what kid isn't?). He is also very sweet, loving, and a great little brother. I adore the moments that he spends trying to get David to laugh or just to get a smile from him. He is definitely all boy. Kyle would stay outside all day digging in the dirt or playing with trucks all day if we let him!
It has been some of the best 5 years of our lives with the addition of Kyle to our family.  I love how he makes us laugh everyday! Kyle has definitely made our family complete. Happy birthday, and I love you so much!

First Time Out

I decided to start a blog about our boys. David, 11, and Kyle, 5. While we have probably your average number of family members, that's where many of our similarities end with other families. David is one of so many children that are believed to have a genetic abnormality that has gone undiagnosed. He is 11 years old, but mentally he has capabilities of an infant. He is also profoundly deaf, has no form of oral communication, and does not have the capability to use sign language. My husband, Michael, and myself have fine tuned our abilities to understand his needs based on his behavior. All that said, he is one of the best little boys that I have ever met (maybe a bit biased, but I think many would agree with me!) He may not have the capability to speak words, but his smile expresses all the love in the world. That is all I need from him to make my day a little brighter.
My youngest son, Kyle, is another huge bright spot in our lives. He is an average and typically developing 5 year old who, at times, can be the sweetest boy in the world. At other times, he can be extremely stubborn and defiant, but I wouldn't have it any other way. For the 6 years in between the boys, I didn't know if I'd be able to experience the things that others get to experience with typically developing children. So GRATEFUL is the word that comes to mind when I think of Kyle. Grateful that he is mine and grateful that I get to have such a wonderful life with the family that I love so much. Is it all sunshine and roses? Definitely not. But would I change it? Not for anything in this world. My kids wouldn't be MY kids if they weren't who they already are!