Another day and another diagnosis

I have learned to trust my instincts when it comes to my children and it is usually right. This time my instincts were going off about Joe. As I spend day in and day out with my children, I have seen things with Joe that just don't add up. So I decided it was time to see someone about those little things that I have noticed. With the recommendation from a friend I decided to consult with an Autism specialist.

 On the day of our appointment, I was nervous and afraid for all kinds of reasons, but I was so grateful that my husband had decided to take the day off and go with me. He is my rock and helps keep me grounded and that is exactly what he did on this day, otherwise I think I would have burst into tears trying to tell her everything that I see and hear with Joe. We spent about an hour and half there talking with her and her interacting with Joe. In the end she confirmed my fear, Joe has Autism and at this point he falls in the moderate to severe category. So in the end our life got more complicated, but it doesn't change the way I feel about Joe or the way I look at him. He is still my teeny tiny baby boy that overcame so much in the last 2 1/2 years. Joe is a fighter!

So what little things have I noticed with Joe that made me take him to an Autism specialist? Joe doesn't like to cuddle, you can only hug him on his terms-the same with kissing him, he is not affectionate, he doesn't understand the change in voices (mad, sad, happy, etc,,), when someone cries Joe laughs, he walks on his tiptoes all the time, he also has this little skip hop dance he has to do all the time, he opens and closes his hands while he flaps them when he is really agitated or really excited,Joe also for the most part doesn't hear his name or us talking to him, he has to have a pile of toys in his bed in order to sleep, Joe absolutely loves his videos and has to have them on from the time he gets up to the the time he goes to bed (I can never turn them off), he can't keep his attention span on one thing for more than a few minutes, he makes eye contact but it's for brief moments, he has severe meltdowns over the simplest things, he started regressing with his language, he would much rather play by himself instead of with other kids(even his brothers), Joe refuses to eat anything but peanut butter, chocolate, fruits and drink milk -sometimes I can get him to eat other things but these are his go to foods all the time, Joe can't imitate things that I do- for example if I pat my head and ask Joe to pat his head he will shake his head no and say head, he doesn't ask for things beyond milk or juice- instead he takes my hand pulls me to the fridge or pantry and points. There are things that Joe does do that give me hope that through therapy and hard work, Joe will get to a point that unless I told you he had Autism you would never know.Some of the things that Joe does- Joe still smiles at people, once he warms up to new people he will show you things, interact with you but it all has to be on his terms-if you try to hold him, touch him or even get close to him- he will shake his head no and move away. Joe does imitate sounds- cars, pigs, other animals.

Am I sad about this diagnosis- yes, I am, but I know that it is not the end of the world for us or Joe. We can get him the help that he needs now and because he is young it will be that more helpful. I will admit I have my days where all I can do is cry. I am heartbroken for Joe, I am heartbroken for us and I am feeling overwhelmed- how am I going to take care of 2 special needs children and still have time for my other 2 boys, my husband and myself? I try not to think about all that, instead I look at how beautiful my boys are and how smart and caring they are. I'm not a perfect mom, but I fight like hell everyday to do my best for my kids. Cody is growing into a brilliant and caring young man, Logan still has the best smile in the world that can light up any room and everyday he still finds something wonderful to smile about despite the hand he was dealt, George is still my sweet and hysterically funny little boy that reminds me everyday that there is good in this life, and Joe is my quirky little boy that has taught me that there is more to this world than what we see with our eyes.

So in the end, everything our family has been through, is NOT the end of the world, it's the beginning of a wonderful, sometimes scary, loving, beautiful and funny life that I am so blessed to share with an amazing man and 4 absolutely wonderful boys!!

Having a child with Type 1 diabetes and Celiac disease

I know, I know! It's been a while since I have blogged, but life has been busy around here with 4 boys, a husband, a big ole dog that thinks he is a child, PTO meetings, Strategic Planning meetings, and birthdays! So now I am hoping that George and Joe will give me just a little bit of time to write what has been going around in my head for a while now!
      I love it when people tell me that we should be so lucky that Logan's diseases aren't that bad! Really?! Do you know anything about diabetes or celiac? Most likely you don't, otherwise you wouldn't tell me that I am lucky that my 7 year old has diabetes and celiac. While they aren't cancer or terminal tumors or something rare and incurable, diabetes and celiac are life long diseases that can never be cured. This is something that Logan has to live with and deal with EVERYDAY of his life! Insulin is not a cure for diabetes, it is life support for a diabetic. Without the insulin they will die. Diabetes also is very finicky in children, so when you think Aha! I got it now, diabetes will laugh at you and show you that you have no clue what you are doing. We have some great days where Logan's numbers are in the zone, but most days we are lucky if we get one time his numbers are in the zone. No matter how much we count, subtract, divide, and have Logan eat zero carb foods we still don't win. There is no rhyme or reason to diabetes and for the most part it has a mind of it's own- so to speak! So everyday of our lives revolves around Logan's care and management of his diabetes and his celiac.
           Here is a look at a typical day in the Travis house. Mike is usually up by 4:30 in the morning getting ready for work, but the first thing he does is go upstairs and tests Logan's BG. Mike will also pack Logan's lunch for school and make sure that he writes everything that Logan is eating along with the total carbs- since Logan has to eat gluten free he has to have special snacks and lunches made or bought by us. Mike will then measure out Logan's cereal in a measuring cup and then does the same with the milk. Once Logan wakes up we test his BG. If he is high then we have to take that number, subtract 150 and divide by 100 to get his correction does. Mike then adds up the total carbs of Logan's cereal and milk and then that is divided by 12 to get the food dose. Then both those numbers have to be added to get an accurate dose. While Logan is eating breakfast I have to stand over him to make sure he eats every bite and drinks all the milk in his bowl, if he doesn't then the extra insulin will cause him to bottom out. Once Logan is all ready for school, I remind Cody what needs to be done if something happens from the walk from our house to the bus stop or while they are waiting for the bus. Once I know he knows what needs to be done, I hug and kiss the boys and send them out the door. Do you think that is easy for me? God no, I want to scream for Logan to come back, I want to keep him home with me always! The fear chokes me and I have to fight it every single minute of every single day! By this time George and Joe are up, so I am working on their breakfast while doing laundry, cleaning the house, figuring out dinner, cleaning up after George and Joe, dealing with their temper tantrums, fighting, spitting/spilling liquids everywhere, feeding the dog and cat, and the list goes on and on my friends! So, 9 am rolls around and I receive my first phone call from Susan the nurse up at school. It's snack time for Logan, so we see what Logan has tested at, then we do the subtract/divide to get a correction does if he is high. Logan picks out a snack and we take those carbs and divide by 18 and then add it to the correction dose to get a total insulin dose number. Logan is off back to class and I am trying to keep up with everything at home. It's now 11:50 am- Lunch time for Logan! Susan and I once again do the whole BG/Carb regiment. Logan goes back to his day and I go back to mine! It's 1:50 pm- Another snack time, so which means another BG/Carb regiment. And back to our daily routines. It's now 3:00 and Logan is getting ready to end his day at school, so school calls me again after having Logan check his BG, he has to be above 80 in order to ride the bus home. If he is low then they give him glucose tabs and Logan and Cody wait for me to come pick them up from school. Once 3:20 hits, I watch the street in front of our house for the buses to pass, usually by the third bus, Cody and Logan's bus will be dropping them off at the end of the street, I then watch the clock and watch out our bedroom window, waiting for the boys the come walking up the sidewalk. The boys usually walk in the house by 3:40-3:45, if they are any later than that, I will walk outside and look down the street for them. Most likely they are just being poky or goofing off, but you can never take the chance and assume that! Now all 4 boys are home! I make the older 2 do their homework and chores before they are allowed to do anything else, once those are done they have their free time. I try to start dinner around 4:30 since Mike gets home most days after 5. We try very hard to have set eating/snacking times because they help with the control of his numbers, but as hard as we try, most days life has other plans for us. Things get busy and hectic and eating/snacking times get pushed back, very frustrating! Before Logan can eat dinner he has to wash his hands and test his BG. Then once again it's carb counting,measuring food, and dividing by 18. Also have to remember to add his correction dose if one is needed. Once again we are like hawks, watching Logan eat ever carb loaded morsel that is on his plate to insure that he didn't get to much insulin and will then bottom out. After dinner it's usually time to take showers, read, get ready for bed, etc..... But at 7 pm the alarms on my phone and Mike's will go off reminding us to do Logan's Lantus shot- which is the 24 hour insulin. Ahhh finally after all that it's bedtime- for the kids at least! Logan's BG is usually checked before bed so we know what it is. Once all my little angels are tucked in bed and fast asleep, I usually do the stuff I didn't get done earlier because of my little dynamic duo of trouble. Yes! I am exhausted! Yes! I would love to go to bed, but for me most days/weeks I have insomnia. I can't sleep, I can't think, I can't do anything but watch movies or read until I finally become tired. But of course before I go to bed I have to check Logan's BG. The unknown is not something I can handle, I always HAVE to know what Logan's BGs are. It's the scariest thing in the world to me to have him go low, you just never know when that will trigger a seizure or he will go into a diabetic coma. And usually Mike and I take turns, so on a good night we could get 4-6 hours of sleep and on an awful night we could get none! Most nights I get 2-3 hours of sleep. Everyday is the same! What do we hope to accomplish? Well I hope that Logan will learn to take good care of himself and to always keep up with the management of his diabetes. We also hope that Logan will never go so low that he will have to use his glucagon pen, have a seizure or go into a coma. But I also hope in the end that- Logan will not lose his eyes, kidneys, feet, or heart to diabetes because that is what this disease will do if you are not on top of it ALL the time. 
     Celiac disease isn't cured by eating gluten free, it's just suppressed. If Logan were to eat gluten it would make him very sick and screw up his BG numbers. Yes, we are a completely gluten free house, and yes we make our other 3 kids eat gluten free! While celiac is more common than it use to be, it still is an incurable disease that you have to keep on top of. So not only are we looking at total carbs while grocery shopping, we are also looking at ingredients. Do you know how hard that is? Do you know that we sometimes miss the gluten in a product because they use a different name. It isn't just wheat that we have to worry about, it's also rye and barley. Let me tell you, it's in EVERYTHING! There are things that you couldn't even imagine finding wheat, rye, or barley in, but they are there! When you come into our house you will not find cookies, chips or other junk food (most of the time). Why? Well one, they are empty carbs for Logan- meaning that his insulin will stay in his body longer than the carbs from those foods will, two, gluten free eating is expensive! And there are 6 of us eating this way. A small box of gf cookies (smaller than normal boxes of cookies) usually costs us between 4-5 dollars a box. So to us that is not worth it. Instead we do a lot of baking, we make our own bread, and everything else is made from scratch. Besides it's much healthier to eat this way, my kids are now choosing fruit over junk for a snack, they love their veggies and are overall happier and healthier. But in the end, Logan is still unhappy with his life. Why? Well he hardly ever gets to go out to eat, unless they have a gf menu, he has to have special snacks at school that I pick and take every week, he can never have hot lunch, he doesn't get to have someone's special birthday treat that they bring to school, he has to constantly ask what's in the food if someone tries to give him something, and for a 7 year old this is all big things.
     No one wants to feel like an outsider. No one wants to be left out from treats, parties, or spending the night at a friends house. Yet, this is what Logan's deals with everyday of his life. Somethings we just can't make easier or better. So in the end, do you think it's lucky that my 7 year old has diabetes and celiac? I don't! I can't change what is, but I can help Logan make the most of it. But no matter what, I will always worry, I will always cry when no one else is around, I will always be just a little bit angry, I will always be an advocate for Logan's diseases and I will ALWAYS love my son and think that he is awesome, brilliant, handsome, and lovable, despite what he thinks about himself most days!
            " Woke up late today and I still feel the sting of the pain but I brushed my teeth anyway, I got dressed through the mess and put a smile on my face. I got a little bit stronger"

Much love to my family and friends! FYI- Most days my smiles are fake, but I try everyday to give you a real one!

My first post!

So I was told I am not coping well with Logan's dianosises and that I should find something that will help me. So here I am blogging! While this will not all be about Logan and his life because well I have 3 other boys, so I am sure I will blog about them too. Especially my dynamic duo of trouble- George and Joe! Plus now family and friends can see what my life is like day in and day out hee hee! I'm sure you are all SO excited about that! Oh well get over it. I am told I have to learn to cope with the road my life and my family's lives have taken. So if there is one thing I am good at- its talking even if only to myself!
     May 18, 2011- This day will forever be burned into my mind! Everything that everyone said, the way I felt, the way Logan looked, all the sights, sounds and smells. It will never go away and it will always be the base of my nightmares.Hmmmm is this why I don't sleep? Anyways, I took Logan in for a check-up to his pediatrician for stomach aches that Logan has been having on and off since January. Dr. Faris decided to do some blood work and send us to see a GI specialist. Except everything changed the hour after seeing him. Dr. Faris called us at home- Logan's blood sugar was 617 and we had to go to Children's in Milwaukee to get insulin! Dropped Cody off at my parents' house and then dropped George and Joe off at Mike's parents' house and away we went-racing to Milwaukee! Got the insulin he needed but, we had to be back in the am to see his Diabetes specialist and figure out how to take care of our child and his daily needs. Logan was then tested for Hypothyroidism and Celiac disease since those are all connected. And guess what? Life just got more complicated- Logan has both of those also! Wow talk about life changing, now we are not only counting carbs but we also have to look for gluten free foods. Going gluten free was hard but we are managing it. Yes all of 6 of us eat gluten free. Why you ask? Well because we love our child and while he didn't ask for any of these things he shouldn't have to be the only one that changes for them. Gluten free eating is all that bad, there are things I miss, like a big ole juicy bacon cheeseburger from Culvers! Yum! But hey not eating that stuff is helping my diet, well that's what I keep telling myself lol! I also gave up regular soda when Logan was diagnosed with diabetes. For those of you who don't know, I drank 12 cans of Mountain Dew over a two day span. Yes unhealthy but, I couldn't get through my day without that soda. I gave it all up cold turkey for Logan. I was happier without it in the long run. So now to be completely truthful, I sometimes cheat when Logan isn't around. God, I'm such a horrible mother! But sometimes I have to have that cheeseburger or stop at the gas station while running errands and grab a can of soda, yes mountain dew. But I don't do it often and I NEVER tell Logan about it, no good would come from that. And I really am tired of seeing my child's heartbroken when he misses out on things like birthday cake, Mcdonalds, regular soda, or most other foods that everybody takes for granted and don't even realize it.
    Well now it's that time, all 4 boys are home at the same time not getting along and I still have to figure out what to make for dinner since I was lazy today trying to get over this horrible cough of mine! Until I blog again my friends and family! Much love to you and please give the loves of your lives hugs, kisses and say I love you, you never know when life will change!