Forward Momentum

This is the time of year that everyone reflects on the events and changes of the previous year. 2010. 2010 was an interesting year for us. Kaitlyn moved from Kindergarten to 1st grade. Hayden moved from ESE pre-k to mainstream Kindergarten. We moved several states away. We went from Sea duty to shore duty. We've started new adventures and walked away from old ones. Lost friends, gained friends and just had an interesting year.

Hayden

Last year started out rocky for Hayden. We were dealing with alot of respiratory symptoms for him. As usual, we weren't getting alot of answers, just guesses. His GI stuff did a flip from diarrhea to constipation. Before, we couldn't get it to stay in. Now, we are looking for things to get it out. The last half of 2010 was promising, though. We saw a dramatic decrease in the respiratory crap and a bit of weight gain and growth. It wasn't much but it definitely was much appreciated. Hayden's weight still has both Jeremy and I concerned as he looks like a walking skeleton.



Not much we can do about it right now as his new GI doesn't look at HIM, just a piece of paper. This puts him at about 30 something% for weight. They are only concerned in he's below 25%, but when he turns 6, which is just a couple of months, his current weight puts him barely at about 10%.

On the other side, Hayden has made progress at school. He still struggles socially, but that has come to just be apart of life for him. He has made a couple of friends, Aiden and Tristan. Hayden even had Aiden over for an overnight. It went ok. Hayden's teacher tested his reading level. Hayden reads at the level of a 2nd grader halfway through the school year. This was at the beginning of Kindy. That's AWESOME! The downside to that, though, is that his reading comprehension was barely at Kindergarten. That, too, isn't surprising and is a common thing for Aspies. My theory is that he gets the rules of written english and that's why he can read such big words and books. He doesn't process it, though. It would be like you or me reading a manual on biophysics. We would read most of the words but not understand a lick of it. lol. Hayden also got a new chair this year (see previous posts). This chair has opened up freedom and independence for him. He can conserve energy and go far but have a bit of control over where he goes. He can't selfpropel huge distances or even around the grocery store, but he can move himself to things he wants to see. This has also opened up freedom for us. No longer must we have two pushers for outings or fill a shopping cart with children. It's like he's walking next to us. It's great!




Kaitlyn

Kaitlyn has started a few new things this year. She's cheering again and truly enjoys it. She's also done a few pageants again and has expressed the desire to continue. She has also started Girl Scouts. Kaitlyn's a Daisy. She's doing really well with this one, too. She's also made new friends at her new school. She's also been introduced to female drama at the elementary level. lol She has her best friends and kinda friends and friends she puts up with lol. Kaitlyn has also had her troubles this year. We are still working with her on her lying and her drive. Kaitlyn's reading level was tested, as well. She tested with the reading ability and comprehension of a 3rd grader the first week of 1st grade. Yet, another test, she tested as just above avg. for 1st grade. The way the test is administered, though, she can choose to quit when she wants. She quit early. *sigh* We will work on this motivation to finish problem. In 2010, she also had her first slumber party with 2 of her friends. That went great, better than expected.



MaKaylah-Ann

Well, what can I say about Ms. MaKay? She is just as sassy and loud as ever. This last year, she made huge progress with her speech. At the beginning of 2010, she had just begun speech therapy and wasn't speaking English at all. By the end of spring, she was running her mouth and using her words for good and evil. MaKaylah has also shown a love for sign language and picks that up easily. She still has problems with fluid on her ear drums which leads to occasional ear infections and misunderstanding of what's being said. We are working on that. Makaylah still appears to have sugar problems with spikes and dives. Her A1C was normal, though, so I'm not stressing it. We just solve as they arise. MaKaylah still misses her friend Haley from Jax. That was the little girl of Makay's care provider while I was in school. She still asks for "Mi Kappy," too. I miss Katheline, as well.



Jeremy

Jeremy transitioned to shore duty this year. Although he doesn't always admit it, I think he misses the ship. One thing he is loving is the ability to hunt frequently. Jeremy got a taste of possibilities this last year as he was selected for Chief's board but wasn't a board selectee. We still aren't on 100% the same page of where he should go from here, but, hopefully, we'll figure that out this year.




And last, me.



This past year was definitely a funky year. I had to learn a few new things about myself. I had to make decisions. I am continuing schooling and hope to be an RN within the next 2 years. I had to learn the hard way that not all people are good, even other moms. I got burned by a few people. I had to cut others away so I could grow on my own. I had to learn that I can't shoulder other people's weight. I can't take on my friend's responsibilities and a good friend wouldn't ask me to. This past year, I let go of 2 long time friends and 3 fake friends that I trusted too easily. I found that by letting these people go and stop worrying about their children and their mistakes, I had alot less stress around me. Amazingly, I lost 20lbs almost immediately of letting the last 3 go. It was literally and figuratively a weight off my shoudlers( and hips and belly and....). I am still struggling slightly with small reminants, like my mind wondering to these people and situations but I'm learning to stop myself. I have many people in my life who I've been friends with for years. They are fellow moms. They aren't as demanding or stressful. These are effortless friendships. They are much appreciated. My self esteem and confidence is still recovering from the other individuals but it's on the up and up. I also have a new doctor. She has hope that she can figure out what is going on with my body and get me back on track. She's the first doctor to look at me and say "yeah, you're overweight but this isn't you and this isn't something you completely did to yourself. Something's not right." She looked at my weightgain history and red-flagged it. Gaining 35lbs in 30days specifically following each pregnancy and only then isn't normal. She's also adding in the other symptoms noted and not.We are working together on this. I'm also helping with Kaitlyn's cheerleading and girl scouts and doing alot of sewing and bow making. I'm hoping, this year, to actually make and sell items again. This time, I'm including clothes with my goods.









For 2011, we have many goals, large and small. We are working to improve our home. We are still working at the Hayden puzzle. Kaitlyn may go to a competition cheer squad. I'm hoping to increase my personal income to my household. We are getting financially better and have almost gotten rid of all of our debt(minus vehicles). It's nice knowing we don't qualify for debt con. as our debt is so low. This year, this month, it will be gone. That's a great feeling. We are hoping for more vacations and travels this year. MaKaylah starts Pre-K in the fall. We'll have an empty house during the day. That will definitely be new. I'm hoping to grow with my scrapbooking. That's a new area for me and it's looking promising.



So here's to 2011, the unknown, the adventure. Let the journey begin.....

3 steps forward, 8 steps back

I haven't written about this yet as I haven't been able to wrap my head around this. Since we got up here, the medical team for Hayden has actually been putting forth an effort to put a name on his living question marks. They've all got the same opinion, Metabolic, Mitochondrial or, small possibility, chromosonal defect. Genetics wanted to do the Chromosonal microarray and a metabolic work up. The CMA looks at the chromosomes on the microscopic level for deletions, duplications, and other errors.


Tricare denied the testing.


I'm just speechless about this. We've never been denied anything until we got up here. Since being up here, Tricare North has denied the $50 wheels on a $10k wheelchair, the opportunity to see a AFO maker that specializes in children and now this. It appears it was denied because they don't approve testing for "research purposes only," and, since he's dx'ed with Asperger's Syndrome, they seem to be under the impression that this testing was to look for an Aspie gene or something. They don't seem to be thinking of the other issues. Mind you, this is after they've paid for the Wheelchair, braces, therapies, feeding chairs, breathing equipment and meds, formulas, and other bloodwork. They think this testing is just for the already dx'ed Asperger's. So I guess we file an appeal.....

No word yet on the Metabolic screening.

*sigh*

Good Night and Good Morning!

Yesterday was Kaitlyn's 7th birthday. For her birthday, I went out on a limb and did a slumber party. Some of the girls didn't stay the night, which was expected, but two did stay. Great! Because I knew that this would be breaking our routine anyway, what the hell, Hayden can have a friend over, too! (what was I smoking lol). So Hayden had a friend spend the night. His friend is the brother of one of Kaitlyn's friends and has been over to play before. I've been hesitant for him to have a friend sleepover because Hayden barely sleeps as it is. Hayden can not share a room. He gets bothered if other kids aren't "doing it right." He's a light sleeper. He wakes up often at night. Like I said, though, I knew his routine would be broken anyway so hey, why not.


It was a success!! Yes, there were a few rough patches. Hayden had to be repeatedly reminded to PLAY with his guest. He likes snuggling with mommy for a movie better :) He and Aiden did do some arguing, but, when it came to sleep, once we got Hayden settled down, he slept. Hayden slept with an "intruder" in his room! Now, honestly, I don't know if he'll want to do it again any time soon (or I) but hey, a step forward is a step forward. <3

Spin it like it's HOT!

This past thursday, Hayden got a new set of wheels! He, now, rolls a "big boy" manual wheelchair made by Colours in Motion called the Razorblade Jr. It's a super lightweight, easily rolling chair that turns with a finger. It's blue and neon green, of course, cause we are still avid Buzz Lightyear fans. :) This chair has been awesome for him! He's never sat up so well! He loves the fact that he can control where he goes. He can't do any real distance, but he can get himself around a room easily, especially if it's tile. Streets are still a big struggle, but, hopefully, he'll be able to push himself a little bit on the streets soon. For now, he's doing well inside on smooth flat surfaces. His favorite thing to do is spins! I got some short videos. Now that I know how to upload from my cell to youtube, there will be plenty more. Here's two videos, enjoy!

(almost) Wordless Wednesdays

I was  thinking as I was staring at these box top clippings. My son came home emphasising how it was extremely important for him to collect 30, yes 30, box tops in 2wks so they could have a popsicle (cheap prize huh) party in class. I'm searching, buying, clipping and keeping only to realize he hasn't thought 2cents about it since giving me the paper. Do i get the popsicle? No. I'm just sayin'.

Silly Sunday

A couple of weeks ago, I got Hayden a book from the library. Now, I've been getting the kids 2 books each from the library for awhile now. Of course, I try to pick things they'll be interested in. For Hayden, this time, I got a My First Atlas-type book made by Nat Geo. Hayden loves the book. In fact, the pages with the most creases are the pages that show a map of the entire country. Hayden wants to go to California, Alaska, and Canada. He bugs us time and again about making a trip out there. Today, is no exception. This morning, I keep hearing over and over about how we need to go to CA and how he wants to see the Pacific Ocean to see if it's like the Atlantic Ocean. He even says we can drive to CA by stopping in Montana and Utah then be in CA the next day. If only it was that easy, Hayden......

Whispered words of excitement

Sorry I didn't blog about this sooner. As many of you know, we have dealt with our share of crappy docs. We have dealt with docs that were careless, could care less, rude, incompetent, and down right stupid. We've had good docs, too, that were just limited by circumstance. Since moving, though, we have to get a whole new team. I was actually both dreading and looking forward to this. Dreading because I have no idea what these people are like. Am I going to be fighting the same fights from Fl? The fights of:

"stop GUESSING diagnosi"

"PLEASE just finish the task"

"You ordered a test but didn't ORDER the test?!"

"why are you asking the same things like we are new"

"you are contridicting yourself"

"he will NOT outgrow by 5 since he IS 5!"

etc.

I was also excited cause these are new people. People who aren't limited. People who have a reputation for being great! In Jax, if it wasn't a common, obvious disease like MD, SB, or DS, you were CP and that was it. (Hayden has a CP dx). Yet, these people have heard of everything out there! For sure they could confirm or give a proper dx.

Well, so far, we have met 4 people. (This was after getting the boot from the base clinic for being "too complex." Their words. Not mine. lol). The first was a pediatrician who gave me bad vibes. She looked like a deer in headlights. She didn't inquire or ask questions. She couldn't get a simple referral put in right! Please help me understand how ABA therapy gets confused with psychiatry? lol Well, she quit....like a coward. She sent a letter and refused to get on the phone, just saying he would be better serviced with a different ped exp with SN kids. Duh, huh?
        The second person was the PT that did his seating eval for his new chair. I seriously expected Hayden to just get a seat with a set of laterals and belts. Instead, this guy saw past the fact that Hayden can walk and actually assessed his seating needs. Hayden is getting more than I would have even thought he needed, but I am excited about it as maybe it is possible for Hayden to sit properly. I can't wait to see how he sits in this custom seat.
        The third person was a Neurologist. Actually, two Neuros. The first thing one of them said to me was, "I bet you've dealt with alot of frustration and no answers in the past. Lets start from the beginning and from scratch. How was the pregnancy....?" I hadn't even said much to him but he sat and listened to everything Jeremy and I observed and were told, asking questions along the way. A second neuro came in and they immediately were tossing out their observations and hypothesis' of what may be going on. I had never heard feedback like that. Usually, it's like going to a psych lol. I talk, they write. These people actually cared and paid attention.
       This past week, we met a new person. We found a new ped to replace the other one. This one was running behind schedule, but I could see why and was totally happy with it. She is in practice alone. This is great since this means we'll always see his doc. The second thing I saw was that she was late cause she took ALL the time needed with EACH patient. She didn't just jot down a note, leaving the room while you sit for another 20min. She took all the time needed for each patient until they were out the door. When it came to us, she sat with Jeremy, Hayden and I for about an hour. She interacted with us, too. She asked questions, she gave observations and thoughts. She even had Hayden on her lap playing with him while we talked. She was totally comfortable with him. She didn't act afraid of his record. She didn't blow him off simply because he walks and talks (you wouldn't BELIEVE how often that happened in Jax). And here's the best part, she perscribed a cream for him and emailed Target, but, when we got there, the script wasn't there. It was after business hours, too. Crap, I'm going to have to call and "harass" the clinic the next day. NOPE! I called the next afternoon and they said it had already been taken care of first thing that morning! :O What?!

You northerners have a good thing going up here. So far, I'm loving this. This is just so unusual for us. Even Jeremy was in awe as he hated going to appts in Jax because of the way the docs acted. Once, he had to restrain himself from cursing out a doc that was just being blase and rude. If this is how medical care is supposed to be, I'm grateful to finally be in a better area. I've met people in Jax who were going STATES away for medical care. Now I understand why.