November 2012
November 6, 2012 - Time flies when you are having fun! I cannot believe we're almost to Thanksgiving and I can't believe I have not updated the website since August. I know I won't remember everything but I'll tell you what's been going on.
We've been gearing up for the 2nd insurance appeal. Because of all my talking to HR at my company they decided they wanted to review the health plan so they gave me an extension on our appeal. Yeah! Then when we were getting close to the appeal deadline I started pinging them because depending on what they determined I may not have to appeal. They gave me another extension from October to November. So I started working on everything - determined how to approach this one, got letters from the therapists and pediatrician (although that one needed to be reworked) and met with our attorney. Then last week, just before we were to go talk to our pediatrician about her letter and what we wanted, we got the call from my HR lady saying they were removing the developmental delay exclusion and would pay for his therapy until Nov. 15th. Then after Nov. 15th we'd have to show that he meets medical necessity to have therapy. So what all that means is we kind of won! While I'm still mad that they were throwing the developmental delay card over the medical conditions - I'll take this to not have to fight right now. This last week they did go back and pay all his therapy bills. And now I get about 2 weeks of peace until we hit Nov. 15th and then I'm sure they will start denying them again. But a lot has changed from then to now - he's made some amazing progress in all areas - the baclofen is really helping - so I'm hopeful that the therapists notes and evaluations will now show that he's making progress, meeting goals and meets their medical policy for meeting medical necessity. If not, we'll appeal again. A least one source of stress is off my back for awhile!
We spent a lot of time outdoors the rest of the summer - hanging in our little white trash pool, taking walks, playing outside, working with Megan on her balance bike, going to the park. We really had a great summer and thankfully the weather has been so nice that we're enjoying fall too!
Labor Day Weekend we headed to McCall, which we hadn't made it to all year. We had a nice time hanging out. We got to spend time with Carter (Kris & Jason) and also saw the Wrights and Caufields. For the BSU vs Michigan St. game we had TVs setup inside and outside and had a big BBQ at Scott's dad's place. It was a great time. They had Jazz on the Green at the golf course that weekend and Scott, Ryan & I stayed up at Scott's dad's place and listened to it while everyone else (including Megan) went to it. Megan had a great time.
We had a meeting with the school district the end of August and decided Ryan would be starting kindergarten a week or two later than everyone else and we'd start by only having him go Mondays and Fridays. Then we'd have him repeat kindergarten next year. The first day was pretty big and I have to admit I was a little misty. He has a wonderful aid with him at all times. We just found out we're losing her after Thanksgiving and hope that we get a great replacement. We had him start riding the bus home from school and he looks so cute on the bus. It actually comes right to our house to drop him off (which is nice).
Ryan overall is doing great. He's fighting some junk right now but the baclofen is continuing to help him and he's making progress. His speech is probably making the most progress as it seems like he's picking things up more and more. He can count to 10, he is learning his colors, he is doing great with object recognition. We still have a long way to go with gross and fine motor but we're making progress. We're going to start working with his therapists to get him a new chair. Not sure if it will be a wheelchair or pushchair but a different chair that gives him better seating. He's had some episodes for probably years now that always presented like gas bubbles that bothered him. After the baclofen pump was inserted, they changed to seem more like muscle spasms. Lately a few have presented more like seizures so we spent the majority of Halloween at the hospital having an EEG done. We had two episdoes within the first hour and then we waited four hours for the next one. Based on the way the EEG looked like an earthquake had hit when he had his episodes we're believing they are a type of seizure. We meet with the neurologist next Tuesday to find out. Will update once we know.
Ryan has been displaying more and more bad behaviors that we appealed our developmental disabilities budget because we couldn't get enough services to have enough behavioral intervention services. We redid our SIBR on the 30th and increased our budget for services by a good 26K. That should help us work on these behaviors and we look forward to really working on those. I'm very tired of him spitting, hitting and headbutting me.
Ryan lost two crowns over the summer and after he lost the second one we went to see the dentist who decided he wanted to recrown or pull the teeth so Ryan had surgery in September. He ended up losing his top 4 front teeth. He looks pretty cute with that toothless grin. The tooth fairy came and was extra nice to Ryan. $5 a tooth - hopefully he doesn't expect that going forward. I was thinking the tooth fair would only give a $1.
At the hospital there is a long hall you must walk through from labor and delivery to the NICU. The hospital has wanted to do something with this hall and have decided to do what is called Hall of Hope. It will have pictures of kiddos that were in the NICU today holding pictures of them while they were in the NICU and then give a little story about them. We had pictures taken and Ryan will be included somewhere on the wall. It is going to be unveiled on Nov. 16th. Scott & I plan on attending the event and can't wait to see how the hall turned out!
Megan continues to amaze us, make us laugh, and make us pull our hair out. She's making great progress developmentally and knows words that I don't know that most 2 year olds know. Do you know a 2 year old that knows what a contrail is? Cinderella was recently re-released and we bought it for her. She'd never really watched a movie before and now she's an addict. We have the digital version too so that is on the iPad and she'll watch her favorite spots over and over (in the limited amount of time we give her to watch it). She also has watched Tangled and Madagascar 3. She likes those two but not to the extent of Cinderella. Her favorite part is the bippity boppity boo. Last Christmas I got her the Disney Princess dress up dresses and she's not touched them until Sunday when she asked if she could dress up as Cinderella. Now she will hardly take it off. It's pretty cute - she'll curtsey, spin around and sing 'Is this love...' the song Cinderella and the prince sing at the ball. It's cute. I bet you can guess what 80% of the stuff on her Christmas list is? She's been doing really well on her balance bike. Each time she gets on it she does better and goes faster. My friend Christine gave us her daughter's old pedal bike so when Megan is ready for pedals we are all set.
The kids were very cute at Halloween. Ryan as usual could care less but was a good sport at Boo at the Zoo and on Halloween night. Megan was so cute trick or treating. We did a quite a few houses until one was decorated with life size scary guys that moved and scared her. Then she was done. After that she enjoyed helping hand out candy. When I put her to bed she said ' Thank you for taking me trick or treating Mommy.' That melted my heart.
We took both kids to the ENT doc today. Megan still has a cough months after having a cold and still coughs up green junk. One quick look by the doc and yep the tonsils are nasty and coming out. Ryan's ear tubes are trying to come out but where they are positioned I don't think the doc thinks they will come out on their own so we'll have a procedure to extract them. So the Tuesday before Thanksigiving both kids will have a procedure. Megan will stay overnight at the hospital and Ryan will get to go home (that's something we haven't had before). While I hate to do it right before Thanksgiving, that's a long weekend that we'll be home and can deal with recovering. I wanted it done before the end of the year and I am going to get it! I just hope Meg's recovery goes much better than Ryan's!
Work has been crazy busy for me with the project I'm on. Scott celebrated another birthday last week and enjoyed having Megan sing happy birthday to him. We celebrated the week before by going to dinner at his favorite restaurant with the family. We went to the Jimmy Buffett concert on the 25th and had a great time. BSU football has been going on since the end of August and I've actually got to make it to two games. Chuck from Alabama came up along with Pete from Arizona and we had a great time. Pete introduced Scott to a new drink - Angry Balls (a glass of Angry Orchard Apple Cider beer with a shot of Fireball) and it is now his favorite. It was great seeing the guys from college. We're still busy with the Pediatric Family Advisory Council. While they would like me to continue as chair I think I need to step back as my project is going to really start cranking up in December until end of July - don't know how much time I'll have to dedicate.
I'm sure there's more but I think this is long enough. Hope to update after Thanksgiving and before Christmas!
November 14, 2012 - We met with the neurologist yesterday afternoon and we were correct. Ryan is having seizures. Unfortunately it is a little more complicated than that. He appears to be having about 3 types of seizures and has abnormal background brain patterns. Of course it can't be simple with Ryan. The type of seizures the doctor believes Ryan is having is atonic, myoclonic and absence. The myoclonic are the ones that we have been calling episodes as they are the flinching kind. The atonic ones are also called drop attack or something like that where the muscle tone freezes up and you drop to the floor so these are when he really tenses up with legs and arms all spread eagle. The absence ones are when he seems like he is not there, can't break his gaze and is tired afterwards. We think he's have a few of these over the last month. Treatment is medication. We'll start with Keppra, which is the one they have had the best luck with, least amount of side effects and won't put him in a fog. The only real side effect could be he'll go from happy go lucky to short tempered. If we see this side effect or we aren't seeing the seizures diminish or see Ryan's development picking up then we'll need to either increase the dosage or change the medication. The neurologist thinks we'll see some great improvement in Ryan once we on the right dosage and medication but because of the complexity he really is unsure we'll be able to get all of the issues. We went in there feeling about 99% sure we were going to be told seizures. We were not expecting the complexity that we found out about. We are greatful to now know but wish we hadn't let these go on for a couple years now because it really isn't good for his brain and probably has helped hold back his development. We've been talking to everyone - even the neurologist - about the episodes but really until this spring they really presented like really bad gas bubbles trying to move through his system. After the baclofen pump was implanted that is when they changed. I have to admit it hit me harder than I was expecting but now we know, we'll get him on medicine and hope to reduce them as much as we can and pray his development will increase.