My hero

Well its been awhile since I have posted anything. Since I am up late and can't sleep I figured I'd get on a write an entry. So what's been going on? Some new some old.

 Caiden had his developmental eval a month ago. The appointment was a rollercoaster of a ride. We were at Children's Hospital in Parker, CO for half the day. Luckily due to a snow storm, yes a snow storm on the first day of May, a lot of people canceled their appointments. We were able to get both appointments done in one day. Back to the rollercoster. The high parts, I am not loosing my mind. Something is going on with him. However the low, he does not meet criteria for a diagnosis. I was told even thought they could not give him an Autism Spectrum Disorder (ASD) diagnosis, I was told hes not out of the woods yet. We are to watch him closely over the next year. If he has any regression we are to go back for a re-eval and if he has not made significant progress in language and social skills in a year we will re-eval him. The other things we are watching for along with ASD is Sensory Processing Disorder (SPD), Attention Deficit Hyperactivity Disorder (ADHD), and Dyspraxia (a motor coordination disorder). We are to continue speech therapy for his speech/language disorder as well as OT for the sensory integration issues as well as the motor coordination disorder. I am still worried about his low muscle tone and gross motor delays and feel that I would like to have a re-evaluation from a new PT. He has almost no muscle tone and his left foot turns out at an almost 90 degree angle. Because of this he has an awkward gait and has issues with running, stairs, jumping, skipping, ball kicking, riding a bike, basically all the things we take for granted for as a kid and how easy it comes to a  kid. He can not do things that his peers can do. He has problems with activities of daily living, writing, reading, as well as typical childhood play. I hurt for him, but let me tell you he is one happy kid. I guess thats really all that matters. He's just excited for his batman lego birthday cake and party. He will turn 6 on July 2nd. 6! I can't believe it. The best news is that despite all that he struggles with he graduated from Kindergarten on May 31st. He even got an award for "The most likely to create the next hit game". We couldn't be more proud of him. He is one strong kid, and thats why hes my hero.

Now I couldn't leave my Cyler out of this post. He has come so far, taken some steps back in other areas, but so proud of him too. We started our journey with SPD because of him. He has been unofficially diagnosed with SPD. He is a 100% seeker. The kid has such a hard time regulating himself and is always seeking for the deep deep sensation you would get from a big bear hug. He enjoys pain, says it makes him feel better. We also started another journey with him. a Generalized Anxiety Disorder (GAD).Thankfully he got a new play therapist who noticed this and got us in with a psychologist. Due to the severity of his case, daily anxiety attacks and high levels of anxiety between attacks, we decided medication to be the best option for him. I know I know, why medicate a child how could I? Trust me I thought this myself. I said I would never medicate a child unless it was a 100% need. That's where we are with him. Now he won't be on it forever. We are thinking a year and then slowly wean him off so he can take the coping skills he will be learning and apply them to his daily life without need of medication. He is also on a non habit forming anti-anxiety meds and he has had almost no side effects (only thing is he sleeps better what could be wrong with that lol). Let me tell you with only having to up his meds once we have seen a drastic change. Now its not gone but he has an attack like maybe once or twice a week and when he does have them we can work with him to help him get threw it (something impossible before he would get violent and hit kick spit and bite if we intervened). Now more putting him in his room and sitting outside the door crying that I couldn't help him. WOrst feeling ever as a parent, not to help your child. So this is big. His sensory issues however are fluctuating between ok and horrible. More so when he is getting sick, but even then he just seems so off lately. Not sure why, but as we don't have a current OT I have no idea what to do but what I am already doing. I have started the Wilbarger protocol (for those who don't know this is brushing his body with a surgical brush and joint compressions this gives him the proprioceptive sensation he craves to help regulate himself). The meltdowns have decreased, but he is still on a constant seeking mode. Another thing going on with Cyler is his ears. He had multiple ear infections between a year and 18 months. Tubes were finally placed, after a lot of fighting. This was done in Oct. of 2010. His tube came out in his right ear after a couple of years but became lodged in his ear canal and had to be removed by the ENT, at this point the ENT said his left tube was out and he no longer needed to see Cyler. About 2 months ago Cyler got a very nasty ear infection in that left ear and because the ENT told me it had fallen out I assumed his ear drum ruptured. This time I went with me instincts and found an new awesome ENT. Come to find out said left ear tube is till in the eardrum and the pus I saw pouring from his ear was in fact because the tube itself became infected. Infact his body was at war in his ear. It was both trying to accept and reject the tube. He had a lot of granulation tissue surrounding and on the tube. A mess, complete mess. So after taking an oral antibiotic on top of a steroid drops with an antibiotic added his ear healed. He also mentioned to me that because Cyler snores he had wondered if anyone had treated his nose. Nope no one ever mentioned anything. His adenoids and tonsils are bigger than they should be. He only mouth breaths and while sleeping snores like an old man. He told me this could be the reason why Cyler keeps getting ear infections and if we do not treat his nose his ears will never heal. WOW! Only took almost 3 years for someone to figure it out. I have always been worried about Cylers snoring, but no one would listen. YAY for our new ENT who I can't remember how to spell his name, lol. Anyway we have a couple more weeks of the flonase and if we don't see a difference to stop the drops and we will discuss possible adenoid removal and he will probably put tubes in his ear again. Not sure about his tonsils, but I will ask him about that when he goes back July 5th. He also will be going in for a Developmental Evaluation for possible ASD.


So wow, its been crazy around here. I am so thankful for summer break. Thankful for great friends, a loving husband, awesome kids, and a roof over our heads. It may get tough sometimes, but hey we have each other and thats all that matters in the end.