Friday, December 19, 2014

Attachment in Progress

Attachment in progress can be so painful. It can also be beautiful.  Feelings are so complicated, especially when you have to share mom.

I didn't show this picture earlier....Emma was not happy because she wasn't where Michelle is.  I was reaching out to touch her head because she needed contact.  She wants to be next to me in pictures.


Contact......

A moment with Anthony put Emma into a pout.


Standing in front of mom, happy.  Just a few moments before she almost has a meltdown because she was next to me but behind Larissa.  I moved her to the side to move her in front of me but for a moment she thought I was pushing her away.  The look on her face at that moment showed her pain.  The picture shows her delight of being placed in front of me.


After an intense summer of working on attachment with Emma I have seen so much growth.  Her food issues are in the past. She is still my pickiest eater but she eats meals with the family.  She is happier now that she gave up that battle and allowed me to provide for her.

Sometimes it is the little things that I notice.  Today I had to trim her nails.  That may seem totally normal but it is the first time that I have ever had to trim her nails.  Normally when she gets anxious she chews them off. Her anxiety level has gone way down. Now if I could get her to stop licking her lips, they are always chapped in the winter.

Emma comes up to me and offers me messages, wants to sit next to me when we eat out, wants me to take her picture, plays with the baby appropriately (she used to ignore the baby), and generally wants me, her mom. 

I was concerned that with school starting she would go back to her routine of attaching to her teacher.  Thankfully they did match her with a teacher who has not allowed that to happen.  It has helped to keep Emma on track with her attachment to me. 

Interesting to me is this lack of attaching to her teacher has had an impact on her grades.  She does not look for approval from her teacher and is failing school.  I hope that she will come to see the importance of passing but the motivations I have offered have not had any effect.  I mentioned to the school that she may need to be held back.  Emotionally she is years behind so holding her back may be a good thing.  I am looking at starting some new positive reinforcements after Christmas break to see if we can turn this around.  I have been surprised by this issue since last year her grades were so good.  At this time I think that attaching at home is more important than grades but she needs to find a balance.

I believe that 2015 will be a great year for my baby girl!

Thursday, December 18, 2014

School Meeting

I meet with a team yesterday to discuss options for Larissa. I went prepared for anything. I had a doctors note stating that Larissa could not attend school all day because of the fatigue associated with her seizures. I had the diagnosis from the last sleep study. I was prepared to homeschool (I found a group to join). I was also open to ideas.

 My concerns were: she comes home from school so exhausted that if given the opportunity to fall asleep she has worse seizures then she has ever had, some days she comes home so tired she is dizzy, she is no longer able to participate in dance because of fatigue, she no longer carries around books and is excited to read, her test scores are dropping, her reading level has dropped.

The following is her latest progress report, the long stretch of no scores was when she was homeschooled.  She started this school year off with a very little gap.  I had hoped that she could close that gap.  Instead it has widened.  Her reading level for her AR books has also gone down.  I can understanding a reading level possibly not increasing, but going down was upsetting for me.


Larissa's teacher has been telling everyone that she is fine in class.  I have found that to be surprising.  The meeting started off with me asking her teacher if she falls asleep in class which she said no.  I asked if she could tell that she was tired and she said yes.  She said that some days Larissa is checked out.  She is not engaging in any way. She is not a behavior problem, just sits there zoned out.  I don't consider that to be fine.  On several occasions I have asked that I be called to pick her up when she is that tired. I have asked because some days she comes home dizzy from fatigue.  There is no benefit to her sitting in class if she is so tired she is zoned out.  Larissa has told me that she doesn't fall asleep in class because her teacher wakes her all the time.

We discussed options for a long period of time.  Finally it was proposed that Larissa come to school in the morning, go to math, language arts, reading, writing, recess and snack time and then go home at 11:40.  No social studies, no science or related arts.  So no art, music or PE. 

I asked that Larissa be brought in because honestly, if she didn't want to do partial day and homeschool I would have simply done that.  Larissa has asked to be homeschooled.  She came in and they asked her what her biggest struggle with school was.  She told them that she was tired all the time.  We talked with her about doing half days.  What this would mean to her schedule and what she would miss.  She said that she would be fine with half-days.  I asked her again at home and she said she was good with that idea.

So we are doing half days.  I don't know how long we will do this.  We are hoping to get some answers so that she can participate in school all day.  However, getting answers is slow, seeing professionals is slow.  It is possible that we may never find the answer. 

Tuesday, December 16, 2014

George

George is gone.

He moved in with Jason. 

When Jason was looking for a place of his own he asked if he could take George if he found a place with a fenced yard, wood floors and an owner who allowed pets.  I said yes because George and Jason have a very close bond.  (Also, I figured it might not work out and George would be back.)


So Jason found a place with a fenced yard, wood floors and an owner who allowed pets without pet deposits!  George moved in with Jason.  At first Jason reported that George was whining a bit.  We figured he would take a little time to adjust...and he did.

Yesterday Jason stopped by and told me that he just spent $40 for dog food and treats.  Seems that they are doing well.  I guess the adjustment is going well and it looks like George won't be coming back.

I miss George. 

Guess I might have to go visit him.

Monday, December 15, 2014

Neurologist Again

We have been back to the neurologist.  Our appointment was at 10 so I let Larissa sleep in.  She went to bed at 8pm and came down to my room where I was getting ready to go at 8:30.  She snuggled on my bed and fell asleep.  I woke her at 9 to get dressed and we left at 9:15.  She slept in the car on the way to town.  We went to the neurologist and left to go meet my husband for lunch, she slept once again in the car.  After lunch we drove home where she slept again.  This is how tired she is all the time.

The neurologist says that the sleep study she had only rules out sleep apnea and narcolepsy.  Those have been ruled out so now we need to find a sleep neurologist, there are none in South Carolina. She also wants to put her on a stimulant to wake her during the day and get an updated MRI.

I am so frustrated.  It takes months do see any type of specialist and so far we haven't been able to see anyone who can help.  This isn't helping Larissa with school at this time.  We were supposed to meet last week to discuss her schooling but it got changed to this week.  If I decide to just pull out and homeschool then I would need to get all of the books for half a year as well as join a homeschooling group.  Not sure if I want to do that or not.  I am still looking at my options and it is slow going since my internet is acting up and driving me crazy.  Looking for a new provider.

Wednesday, December 10, 2014

Struggles

This afternoon Larissa was sitting under the Christmas tree working on her homework. I walked into the room to check on her progress and she had her hoat over her head. I asked Michelle if she was asleep and she said no because she could hear her. I pulled the coat off to find out that the noise Michelle heard was Larissa having a seizure.I had my phone on me and wanted to record it.  However, I pushed the wrong button and got a picture instead.  In the beginning her chin juts out and her arms start to constrict.  Her muscles will tighten and she sounds like she is choking. 

The kids saw her seizure today and were shocked.  They hadn't seen one that bad.  It is hard when they think that she gets special treatment when she goes home early or is allowed to sleep late. I tell them it is because of her seizures but they just don't see it.


Sometimes after a seizure she will just go back to sleep afterwards and sometimes she will wake up groggy.  Today she woke up totally out of it.  She was talking nonsense and was disoriented. She came tome and wanted to sit in the corner of my desk.  She was asking what we were doing, what our plans were, she thought she had missed something and was so confused.  I made me cry.  Her seizures don't typically make me cry but her reaction today did. Shortly after this picture she was ready to sit in my lap and be comforted.






At this time she has dropped out of dance.  She just can't cope.  It seems as though she has really struggled since she broke her arm.  I don't know if the extra stress on her body was just too much along with the stress of school.  I have decided that we will homeschool again after the Christmas break.  (She had asked to be homeschooled and then had second thoughts when her teacher told her about ice cream parties and field trips.) She will also go back to dance then.  I need to decide what approach I want to take.  In this state you have to sign up for a homeschooling organization or for one of the online schools.  With her IEP I am not sure how that would work.

Tomorrow I plan on dropping the kids off at school and then going and talking to the school counselor.  I plan on showing her the pictures.  Showing her why her homework did not get done.  Why Larissa is struggling so much. That the interventions are not working.  Also, I have an appointment with the truancy board next week and want to discuss the craziness of that.

Thursday we see the neurologist. I am also talking with her regular doctor, I just don't have faith in this neurologist.


Tuesday, December 9, 2014

Results

Well, we got the results today of Larissa's sleep study.  The diagnosis she was given was hypersomnia organic NOS.  In other words she is tired and they don't know why.  The test ruled out Narcolepsy.  Although she had a full night sleep, she fell asleep every time the lights were turned off for 35 minutes.  Actually she fell asleep very quickly the first two times (which led to the question of does she wake up well in the morning) but she doesn't dream during those sleep periods.


The suggestion was given that it could be her seizure medication.  This frustrates me because all last year her seizures medication is what we worked on.  There are some medications that she just can't tolerate and I was better able to determine that while she was homeschooled.  He suggested a stimulant and advised against a stimulant at the same time.  Now we go back to the neurologist and I have lost confidence in the neurologist. 


Not sure where we go from here, can't find the road map.

Sunday, December 7, 2014

Santa Train

Saturday we all took a trip on the Santa Train. The kids were excited to go in a train and had a great time.





This is the only picture I got of those two.....Little Man was in all the rest of them.







Santa was sighted.


Little Man has a fascination with beards so we were able to limit the damage to Santa's beard to a few strands.  Got a very cute picture which I can't share.

We got home and within a few hours I got sick.  I spent the rest of the weekend in bed listening to all the activity going on in the house.  I do believe that I was missed!  I am on the mend and will be back in action tomorrow.  Sleep study results are tomorrow and I am very curious to see if anything comes from it.