Wednesday, January 25, 2012

biggest loser

At the first of the year some friends of mine started a biggest loser competition. Since I was still carrying an extra 20lbs and needed a little extra motivation to quit eating so much junk I decided to join. It has been really good for me. The best part of the competition for me is that we have 3 daily goals and we can get a point for keeping each goal every day. This helps to break down the long term goal to something I can think about each day. My goals are no sweets, except on date night and muscle building exercise every day. I can do these everyday rain or shine, with kids sick, home or suspended or whatever. (circumstances sometimes cause me to miss the good cardio workout). We also have 1 non physical goal. Mine has been to read the scriptures before I turn on the computer each day. This had been something on my mind for a while. I knew that my priorities were off since I was waking up and hopping on the computer (email, facebook, etc.) when I knew this was not the most important thing to do with my morning. It is better to put first things first and make sure the most important things are done. It is amazing how simple this is and yet how hard it can be to do sometimes. Our stake president gave a message at conference recently talking about how truly simple it is to do what we need to do and yet difficult to follow through with what we know we should be doing.

We are now almost 4 weeks into the competition and I have been having a great time. So far I have lost 5% of my body weight (I need to lose at least 5% more) and have gotten my 3 points each day except for 1 day when I ate ice cream. (So yummy but not at all worth losing a point over).

I am glad to have had this chance to get my scripture reading habit back into place. Our ward started a 100 day reading of the book of mormon and gave each member a little notebook to tell us what to read each day. This has prevented me from "cheating" and just reading a few verses on the days when I felt I was too busy to read.

Putting the scriptures before the computer has been a good lesson to me also is hopefully helping me form a good habit - one which I really haven't kept up since college - of reading early in the morning for 20 minutes or so. Since I do not work and am not required to use the Internet for anything it has also been a very good change to only get on the computer once or twice a day, and only when scriptures are done. I realize that my email is not as important as I thought it was and I can generally do every thing I need to do in just a few minutes in the afternoon or evening.

For my records. It took me about 4 days of headache and "toxic hunger" in the first week to get over being STARVING for junk food. After that first week it is not as difficult. Well, it is still difficult to not eat whatever I feel like eating, but at least it doesn't hurt!

cute Alexey

Every so often (once a month or less) Lex loves to come get in bed with dave and I during the night. Her favorite spot is right in between the two of us where it is nice and warm and cozy. Sometimes she will fall asleep and then dave or I will carry her back to bed. Sometimes we are too tired to care and just let her stay 'til morning. Sometimes we don't even hear her come and wake up to see a little one in our bed!!! :) Lex has lots of accessories for sleeping - blankets, bears, dolls - and she often brings them with her to our bed. The whole thing is very darling as long as it remains very infrequent. (I remember a phase where she tried coming in every night. She would tell me before bed, "Mom, I might have to come sleep with you because I might have a bad dream." She would pretend to have bad dreams so she could come be with us!)

Anyway, last night was one of those nights for Lex. She came up to our room around 3 or 4am. She got in bed and went right back to sleep. In the morning she told me why she came to our bed. "Mom, last night I came to your room because I thought Clare and Tressel were ghosts. When I walked by Clare and Tressel I saw that they were not ghosts but I was already afraid because when I had closed my eyes I saw a movie and in the movie they were both ghosts." What an interesting way to describe a bad dream.

Saturday, January 14, 2012

the girls

lex - her face is getting better - it mostly looks yucky b/c of some left over glue (that she won't let me pick off)

cute clare recently learned to do monkey bars


Clare is so lovely, inside and out!


Tonight she ran full speed into a glass door at NCSP. It was so sad and she was super embarassed. She has a little bump on her head and she is fine.

jo!! Couldn't love her more. I'll show all the pics from her first time in the swing today at the park so you can enjoy all of her cute expressions. She is 6 months old now :)








Thursday, January 12, 2012

playing catch up from christmas break

cute jo on christmas

the kids waiting to go see what santa brought them
for lex:
for everyone
for Calvin:
for Dan (a new toilet)

for clare:

Clare got a dr. set


(so cute)!

11 year anniversary and a good mood Calvin :) December 29



The day after christmas Lex was dancing with her new doll and hit her head on our brick fireplace and needed stiches. I took her to the ER where everyone with a sick and throwing up or coughing like crazy baby/kid was waiting. We waited 4 hours to have the plastic surgeon stich her up (instead of letting Dave do it at home). All said, we were gone form 3pm-nearly 10pm. Not a fun day. However, Lex loved the attention :)

in the car and ready to go to hospital...such a cute sad face :)



Having fun watching tv in the ER

She loves her new doll!

look at my owie and (Fake) sad face



in hospital clothes and ready for the procedure

She was sedated for the procedure and when she woke up she was like a little drunken girl with slurred speech and totally uncordinated. she was a crack up. Right from the moment she woke up she was ready to go home but we had to wait a little while to be sure she was back to her usual self before heading home.


the surgeon did deep stiches followed by glue and then stereostrips.


She just go the stereostrips off Friday and it is continuing to heal. I'll post another pic later of how it looks currently.

Monday, January 9, 2012

calvin - cranio story continued finally - super long but finally finished

Evaluation with the autism clinicOne of the evaluations we had done was at the autism clinic in San Diego affiliated with the Children's hospital in town. The evaluation was 3 parts. 1st part was a meeting between the dr. and the parents. This gives the parents a chance to speak openly about problems, school and medical history and other concerns without the child hearing. Dave and I went to this together and it was somewhere in the 60-90 minute range. I can't say that this was enjoyable at all since it was basically an hour of talking about all the bad things about Calvin - not an edifying experience at all but a necessary part of the evaluation process. It was fairly clear from the onset of this process that Calvin wasn't going to be diagnosed with autism but there was still some benefit to completing the evaluation since more than anything we were looking for a place to find help. One suggestion she made at this first meeting was to see a developmental and behavioral pediatrician for guidance. They are trained to deal with sleep problems as well as behavior problems -- a good match for us. I started the process of getting an appointment with the behavioral specialist very soon after we left this meeting.

The second part was an evaluation of Calvin which took place 3 weeks later. The test started at 8am so Dave took CAlvin to start the test and the plan was for me to come relieve him after dropping of kids at school and babysitters, etc. The scheduled appointment time is 6 hours. I was concerned Calvin wouldn't be cooperative but the dr. assured me I shouldn't worry, so I didn't. After all, this lady deals with autstic kids for a living so she must be somewhat used to seeing kids who aren't 100% cooperative. For the first part of the eval she spent some time chit-chatting with Calvin to evaluate speech, eye contact, conversation flow, appropriateness of topics, reciprocity, etc. He was very cooperative for this as he usually enjoys talking with anyone. He is not shy and not nervous about talking to people. She did another test where Calvin was asked to copy some shapes on a piece of paper exactly as she did. He was willing to cooperate but tried to turn the paper to make it easier to copy the shapes. This was not allowed in the test so when the dr. tried to encourage him to do it without turning the paper he became very agitated and uncooperative. After a short food break Calvin tried again. He was not cooperative for long and eventually got the dr. so upset she decided to stop the testing. I was pretty surprised at this since I thought she would be used to difficult kids. All said, Calvin was done with the testing before I even got there...less than 3 hours.

The 3rd appointment was once again for parents and dr. only to discuss the results of the testing. As we had suspected, CAlvin did not fall on the autism spectrum but did share some characteristics with autistic kids such as sensory processing difficulties, inappropriate responses, pragmatic speech problems. She gave us some suggestions us seek help for these areas with OT at children's and at school, cognitive behavioral therapy and a few new goals for his ongoing speech therapy at school. This was a very small part of our discussion.

Since Calvin doesn't have autism the question remains, what does he have? Why is he having such extroidinary difficulties in all aspects of life? The dr. had printed an article about the possible link between craniosynostosis and behavior problems noting that in the children who had craniosynostosis there was a higher incidence of behavior problems in the years to follow. She said that we could not rule out craniosynostosis as the possible cause of the problems we were currently having. I was kind of surprised and disappointed as she discussed this for 2 reasons: 1. we already knew this. Dave had found every article in print about craniosynostosis and the links to behavior problems, sleep apnea, adhd and other disorders we had thought Calvin had at one time or another. and 2. how was this going to help me? it wasn't.

The rest of our discussion was about school placement. At this time (mid-november) we were at a major crisis in school. Calvin was suspended several times. He was constantly in trouble. I kept him home many days because he was in such a mood I knew that if he went to school he would be sent home and there was nothing good happneing when things escalated to that point. I had already started looking at the special education classrooms in the district trying to see where Calvin would fit best. This was THE ongoing topic of discussion between Dave and I and in her professional opinion we should push hard for the SED class which was being offered to us.

A complete written report was completed another 2 weeks after our final meeting. I was able to bring this to the school and was also nice to have so that all suggestions, and discussion was documented clearly for my records and benefit.

Diagnosis: 1. behavior problems due to medical condition 2. Oppositional defiant disorder (#1 basically means that there is a problem but do to unknown causes or in this case we can't rule out that it might be due to craniosynostosis)

**As luck would have it we were able to get in to see the behavioral pediatrician right around the same time we finished up our eval with the autism clinic. (Dr. appts consumed my life in November!)

Eval with the developmental and behavioral pediatrician
I was so grateful to be directed to the behavioral pediatrician. I had been feeling for a long time that the regular ped. and the psyciatrist we were seeing were truly in over their head and that we weren't really moving in the right direction. I was glad to know that there are drs. especially trained to deal with these difficult cases. I was also kind of pissed off at my regular dr. for not having told me about them 3 years ago when I came to him begging for help with the sleeping issues we were having back then and also that he didn't tell me about this anytime over the past couple of years when I have talked to him repeatedly about the problems we have been having. Anyway, enough of that rant.

Dr. Gahagan was great. She was a very soft spoken, sharp lady around 50 years old. She did very well with Calvin. She was not at all offended or put off by his defiance. She worked with him as much as she could and was very gentle with him. She examined him as a doctor does, listening to his heart and lungs, checking muscle tone throughout his body, felt his hands and feet, watched him walk, checked reflexes, etc. It was amazing to see Calvin so cooperative. (not perfect but quite receptive). Since dave and I were both at the appointment we were able to talk to her and let her see Calvin and then also had an opportunity to speak to her without Calvin present (I took him to the lobby to watch spongbob so dave could talk to her alone).

She also had a long discussion about the craniosynostsis and the possibility that these problems are all linked to his original birth defect. It is unknown what exactly causes the suture on the skull to fuse early. Some hypothesize that brain development is not as it should be from the beginning and is not growing at the rate it should that is why the skull fuses early. It is not really known, but what is known is that kids with craniosynostosis have a high incidence of eye and ear problems and also behavior and sleep problems. The simplest of answers is that everything is linked to this single disorder.

She strongly recommended the self contained classroom for Calvin and thought that the first thing we should tackle is the sleep disorder. AFterall, no matter what you do to help someone learn new coping skills, if you are super tired, grumpiness will be hard to overcome. So, she prescribed a medication to help him sleep at night and encouraged us to keep pursuing all the avenues of help we are trying.

Diagnosis: 1. sleep disorder 2. oppositional defiant disorder 3. sensory processing disorder

I asked her why she didn't add ADHD to the diagnosis and she said it was because he reacted so poorly to the medication (we tried 2). usually the medication is extremely effective.

Oppositional Defiant Disorder (ODD)
symptoms:
•Frequent temper tantrums
•Excessive arguing with adults
•Often questioning rules
•Active defiance and refusal to comply with adult requests and rules
•Deliberate attempts to annoy or upset people
•Blaming others for his or her mistakes or misbehavior
•Often being touchy or easily annoyed by others
•Frequent anger and resentment
•Mean and hateful talking when upset
•Spiteful attitude and revenge seeking

(Calvin has all of these - on a daily basis)

I have learned a lot about different syndromes and disorders over the last year. I have probably read at least 20 books - one thing I have learned is that the difference between a "normal" kid and a kid with a disorder, be it ODD or ADD or whatever, is that the normal kid will display behaviors sometimes but can still function at home, in school, with friends, etc. Where it gets to the point that it is labeled a disorder is when the behaviors interfere so much with life and in more than one setting that the child is disabled. Calvin's behavior is very present at home, at school, at play and everywhere he goes.

ODD is a cluster of symptoms and not a description of how or why a child behaves this way. One of the very most difficult things about Calvin's disorder is that parent roles have such a crucial part in the development and treatment of the disorder. It is so hard not to crucify myself with guilt over having been such a bad parent that I have raised a child who is failing in all areas of life. Sometimes it is so difficult I feel like I could just die of despair. Additionally, it is my parenting skills and ability to train him to get past his deficits that will allow him to move forward and hopefully become a productive and happy and active boy. This is a heavy burden to consider and one which I do not know if I am capable of. However, there isn't really any way to quit and give up so we just keep moving forward day by day hoping that somehow it will all turn out okay.

We did move Calvin to a special ed class in november. It took me a couple of weeks to figure out which class would be best (the IEP team recommended a certain class but I was not sure I trusted their choice at first but in the end I agreed that they were correct). After deciding that this SED class was right I spend another few sleepless nights grieving over the realization and acceptance that my child did belong in this class. I recognized the feeling as I have had it before - it is the feeling of grief over the loss of the ideal child. Many parents feel this and I know I am not alone. I felt it when Calvin was a baby and I knew that he wasn't "normal." Grief feels terrible. I also felt the same when my Mom died. All grief feels the same I guess. CS LEWIS describes it perfectly in A GRIEF OBSERVED. It is almost like a paralyzing fear which leaves you in a haze.

Anyway, once we put Calvin in the class I felt much better and have been able to keep moving forward day by day. Some days are still awful but on the plus side Calvin is getting more attention at school, more work done and he doesn't get suspended so I know that I have 6 hours to do what I need to do while he is at school and I won't get called to pick him up. his class has 6 kids (all boys) and 3 full time teachers plus a couple of aids who pop in a couple of days a week.

Sunday, January 1, 2012

christmas eve at sea world

We spent Christmas Eve at Sea World with PEte, Jessica, PArker and Bob, Kari and SHi. A great way to spend the day.

Shianne and Calvin took Dave and Clare on the ride Journey to Atlantis. Clare doesn't like roller coasters much at all, and she especially did not like sitting on the front row where you get soaked! Dave used his shirt to shield clare from getting super wet but she still felt very sad after the ride.

daves sad wet face followed by clare laughing at daves wet face
Clare's sad wet face (truth be told, she was really only a little wet and yet she still got really upset -- gotta love Clare!)
darling lex waiting for the people on the ride.

dave recently discovered his love of holding Jo upside down
she seems to think it is okay too!
one of the huge advantages of going with a big group is that there are enough adults to take all the kids on the rides and still people to stay with the baby. (when I go alone with the kids the rides don't happen for Lex and Clare as well). It was a fun treat for Lex to ride w/ Grandpa Bob.
Jo is a cute little trooper when we are out and about.
Calvin was so excited to take Parker to meet Elmo (Clare is conspicusouly absent. She is terrified of all costumed characters)!
Cute kiddos (lexey, clare, calvin, shi, parker, jo (me))!There was a new "snow world" this year which was fun for the kids! I have to say that I do not miss snow at all.



AFter sea world we went to dinner at Claim Jumper and then home for baths and bed.