Thursday, September 27, 2012

The power of the color Blue!

Normally Michael's doctor's appointments consist of the doctor and I talking rather loudly over M's screams and protests. Maybe he/she will get to look in one ear, more or less watch his eyes follow a light and see him walk/run around the room as he tries to find a way out of it. We've had people come to the door to make sure all is okay as they try and do the pulse ox, blood pressure and ear thermometer because he screams so violently. This is also why we have not had an EEG done in over 2 years.

But not yesterday! He had a room with a BLUE curtain. He loves that color. When he has something blue nearby he usually calms right down and loves on the object. There were a couple protests but no crying or screaming. He loved the pulse ox! We've been practicing with stickers on him so I think he associated it with those. He gave me a hug while they took his temperature so he didn't even have time to protest. He thought the blood pressure cuff was funny, even laughing while it tightened. He couldn't hold still long enough for it to get a good reading though. But he was never disgruntle during it. It did take a little effort to get him to hold still for them to examine his ears but not much. When we needed to move away from the curtain they let him lay on the BLUE exam table without the paper on it. He HATES that paper! He opened his mouth so they could look in but wouldn't keep it open long enough to get a great look at his tonsils. He walked around the room with the doctor, as opposed to bolting for the door.

Overall, a great visit!

The doctor and I were able to talk at normal volume for once, as well! We discussed finally getting M into Speech, OT and PT. For years we've heard that M wouldn't do well because he would be "uncooperative". To most, that seemed crazy. But, without a referral we couldn't get in. We finally have them! But now we are facing a dilemma. M receives 2 hours of speech a month (crazy low time, I know) at his school. Because of this, our insurance company could deny us. We would obviously want the insurance covered therapies because he could get 2-3 hours A WEEK of therapy but we'll have a possible battle on our hands and have to drop his school assistance.

But, since we are the always-look-to-the-bright-side type of family, we're just thrilled to have the referrals in. If it takes us a couple months to get them approved and then another 6-12 months of sitting on a waitlist...then PCS'ing and sitting on ANOTHER waitlist... That's okay! Because we'll get in!
My 43 inch, 39 lbs 4 year old :)

Saturday, September 22, 2012

Happy Birthday Michael!

Michael turned FOUR this week! Wow! His first birthday he ate cake but we had to time the day around seizures and he was so groggy I'm not sure he was really a part of it. His second birthday he tried some cupcakes but could have cared less about them and his Daddy was deployed so it just wasn't as fun. His third birthday he wouldn't touch cake or cookies and really just wanted to go play. This year he did great! Cake and cupcakes were both inhaled :) I think his favorite present was actually a previous gift from his Auntie Jenn. He has finally discovered how to build well with the duplo blocks. They have been holding his interest this weekend which is great since it's such a relaxing activity and he has a nasty cold.

Michael's birthday bash at SPED where he ate 5 cupcakes
His piece of cake at home
 On top of his birthday and our usual craziness of school and extracurriculars, we have been trying to settle into an exercise routine. Matt and I both want to lose weight and have been taking evening walks every night. Elizabeth is old enough to stay at home during the hour we're gone but Michael has to tag along. Since we go after dinner, near bedtime, he seems to find it relaxing.

Wednesday, September 5, 2012

We're back!

We had to take a break from blogging for the summer. It was becoming impossible to do updates regularly during the summer. Elizabeth has been back in school since the beginning of August and Michael started on the 20th. Now that things are getting back into a routine and I'm getting some free time in the morning and early bedtimes for the kids I'm hoping to get back into blogging.

There have been so many changes in the last couple months! Michael's speech is improving. He has added a couple more words to his vocabulary, though it still takes effort to form the word. He is starting to sign a couple words as well. Through ABA he now points to an object he wants instead of reaching or staring and crying at it. He also has more patience when asked to wait or sit.

At the beginning of August Michael had a neurology appointment. The doctors still will not order an EEG because he won't sit nicely through one. We were hoping to get one because he has been seizure free for 2 1/2 years but maybe next time. We did start a new trial of meds. His neuro put him on Celexa. It's an anti depressant but also used to treat OCD. Given Michael's need to order things, stack similar objects, getting stuck running the same routes, they thought it might be OCD. He has been working up to the full dose of Celexa for 5 weeks and just started it on Saturday. We've already seen changes and hope it is the meds. He is no longer picky about food, eating it or touching it. He also plays at the playground without running in routes. He is all over the place! It is great...and now a little nerve racking. He used to just run in the same circle, so I knew where he was at all times and didn't have to worry about him suddenly jumping out the ladder opening or trying to go down the rock wall ledge. Now we have to follow him a little closer...until he learns not to plummet to the ground :)

We received news about a month ago as well that Matt will be going to recruiting school this coming spring. We'll be moving next June/July. We're excited and nervous. It will mean we have to find a new doctor, therapist and school for Michael. I'm trying not to dwell on that part right now. It could be a very exciting PCS and we might end up some place that has even more amazing services for him. Right now though, we just need to focus on this current school year, ABA and Michael's new meds.

I'm sure there are more changes that I have failed to mention. (There have been so many!) I'll try and do better keeping the updates coming.

Friday, June 22, 2012

Just a quick update!

Oh how time flies! Before I know it two weeks have gone by and I haven't updated. Once again I can blame it on Summer. 
It is so very hard to sit and blog when all we want to do is play :) And now I have to finish packing for vacation! Matt comes home tomorrow after being gone for 3 weeks and we leave for Texas on Monday! So excited! 

Monday, June 11, 2012

Hearing test

Michael had a sedated hearing test on Friday. The audiologist said he can hear fine. Yay. He did have a lot of wax build up which has always been a problem for M. We may have to start going in more frequently to have it drained. But, at least we now know he can hear us, he just isn't understanding us. We have another meeting with his ABA therapist on the 18th and we'll talk with her more about what types of therapies she thinks he might need. Both the audiologist and the ABA therapist think he needs more speech therapy but his pediatricians don't agree.

Sunday, June 3, 2012

Michael saying "Ow"

If you listen carefully you'll hear the smacking sound (him clapping, hitting my arm) then the 'Ow ow ow'. While I'm thrilled he makes the sound, I'm hoping he learns to only use it when someone actually gets hurt, not when he hits them and says it :)

A busy few weeks!

Busy Busy! That's us! Not that we're doing anything major but we're just always DOING! Michael has had a couple great weeks of fun and learning. 

His first year of Pre-K is done! We're sad because some of his friends won't be there next year. But we're happy because some will and his teachers will be there too. He loved Pre-K! When the year started, Matt and I were nervous about how he would do, how would the teachers handle him, would he even make it through a 2h45m day...? Well he did great. He learned the routine and adapted to his environment. His teachers are AMAZING. They have endless patience. And never once did we receive a phone call sending him home. We cannot wait until next year!!

 We had a somewhat scary week during his last week of school though. He stopped eating and drinking for about 3-4 days. On day 3 we took him to the doctors to see if there was anything physically wrong. He wasn't running a fever or showing signs of discomfort but I was actually hoping for a sore throat. The docs could not find anything wrong so they told us to wait it out a couple more days and see. We were able to get some fluids in him through a syringe but that was it. Around the 5th day he started eating. It wasn't much (ice cream, oatmeal) but it was enough. Now he is back to being my normal pig. :) While he wasn't eating he didn't have much energy or strength. He sat. A lot. He did discover his love for 'weeding' though. Of course, he ended up 'weeding' my plants! They could use a little trimming anyway.

 I love his interest in lining objects up! It doesn't matter what it is, as long as he notices the objects being similar. Blocks, spice containers, soda cans...and now Kool-Aid!! We let him play like this most of the day before I wanted to actually make some. Out of sight is still out of mind with Michael though. So once they were in the cabinet, he was okay. :)

Water!! Oh how he loves water. He stays in his tub for an hour. He can be content to just have his hand under running water. But a waterpark...? Oh my! We went three times in their opening week. He enjoyed hopping in the water, splashing, floating around hanging onto Mommy and Daddy. He wasn't a fan of the "splash zone" where the children can dump buckets of water on each other or spray them. But he did enjoy going down the mini-water slides! He doesn't freak out when he goes under water but it is still not his favorite. The hardest part is getting his mouth closed. Matt tries to time it and dunk under with him when it's closed. Michael comes up, blinks his eyes, rubs them a little and that's about it. We bought season passes to the local park. Michael and I can hang out in the 2-3 foot end and Liz can wander around the place freely. When Matt is able to come they go down the double slides or the lazy river together. 

When we couldn't get to the water park one day because of the rain, Michael did not understand. He tried to go outside and we let him hang out on the front step. He would go out until he got really got rained on. He tried dragging Daddy out too!

Last night was our town's fireworks preview show. Michael saw some fireworks last year and seemed to enjoy them. Or at least, he wasn't upset by them. He just  watched without much reaction. This year was a different story. He was beastly while waiting for them to start. The minute the first went out he was thrilled! He loved the lights. The big booms made him cling to us and giggle. He would bury his head into us but always make sure he could see what was going on. It was a great way to end the last night before Matt left for another TDY (3 weeks this time). 

Michael has also learned a word (sound?). He says 'Ow'. He says it when he hits ME though. His hitting isn't to HIT but to make the clap sound. But when he would do it I would say 'ow'. It is adorable watching the build up to the word. Sometimes he mouths the word but nothing comes out. Sometimes he says 'um um om om oh oh OW! OW! OW! OW!'. He has said it a few time when he falls and we say ow. And he will almost always repeat it when we started saying it first. But, its usually followed with a smack since he associates the word with the sound/act of hitting. We'll have to work on that part :) It sounds like he might be learning 'uh oh' as well. He has only done it clearly a few times so it is too soon to tell. 
Michael will be starting ABA therapy in the next coming weeks. We're excited to see what he can get out of it!