Jumping Through the Ceiling

A time and a place

2010-03-01T09:47:00.000-08:00

So my dear little munchkin is now 6 years old. It's brought something to my mind that I've been considering for some time. Privacy.

We set up her website in her name sharing her milestones and challenges with family and friends. It was her online babybook.

Well I think that as she's getting older perhaps it's not so appropriate to have that public.

The last thing I want is for her friends to google her and find stories about potty training.

So I'm going to remove the content from her website.

I will also be changing the link to this blog and going through it to make it anonoymous. If you would like the link to the relocated blog please email me at sst27atyahoo.com with the subject "jumping through the ceiling" and I'll send you the link once the move is complete.

Happy 6th Birthday Anika

2010-02-25T15:38:00.000-08:00

anika

2010-02-24T13:35:00.000-08:00

Ok, so we've been sick for most of this month. There's a bad cough/cold virus going around. She went from missing no days of school to missing eight days just this month. But she's on medication now for her ear infection and hopefully we are both getting over this for real this time.

Tomorrow is her birthday which really just blows my mind. Six years old.

So who is Anika?

These past couple months she's gotten really affectionate with me. She tells me she loves and gives me hugs. She rubs my back to help me feel better when my back hurts. It's such a nice change from this summer when seemed she barely tolerated me. I love hearing she loves me. And I love her big hugs.

Sometimes she'll help around the house. Sometimes she'll surprise us and get dressed all by herself. She loves jokes. She loves playing with her animals and making up stories about them.

She like lizards and snakes and bugs but she also likes my little ponies, fairies and hello kitty. She loves cuteness and babies. For clothes she's all girly. She picked up her purple swim goggles and said, "These are girlish, but these pink ones are even more girlish so I want to wear them."

Sadly with the eternal colds we've had we had to stop swimming which she really loves.

Here's a couple pictures of the with her backpack being used as a baby carrier. You can see in picture she's feeling off.

When I have more time I'll update about her IEP. I think it's still in progress. We had some issues that we couldn't resolve before running out of time. So we'll have to meet again.

The Principal's Office

2010-02-09T20:54:00.000-08:00

The child fidgeted listlessly in a chair oversized for her small frame as she looked up at me. Recognizing me as a parent who volunteers in her class once a week, she smiled and perked slightly though she quickly began rubbing her stomach to show she was not really feeling better. We chatted as I waited to speak with the principal and she waited for her mom to come pick her up. After discussing her tummy ache and how Anika had been sick and missed school a couple of weeks ago, I asked the girl how Anika was today. Good she told me, then tilting her head to side she raised her hand and amended her assessment by gesturing so-so. Eyes growing larger she explained to me how a boy in class was not making Good Choices and Anika choose to follow those choices too. Our conversation was cut short as the principal returned with a very slightly ashamed looking boy who sat next to me.

Now it was my turn.

I came in to discuss some concerns I have about my daughter's work and her class-size, I had meant to explain. Instead, what I said was, I'm wondering about the procedures for choosing a teacher for next year and the possiblity of changing her class now.

Diplomatically he asked, what's going on?

So we discussed modifying her worksheets with bigger lines, havingsome things pre-cut for her, making sure her adaptive scissors are available to her, making sure that her chair with the back support and foot support travel with her when she works at another table and getting more assistance during work-time.

The special education teacher was called in. I had spoken with her the day before. She agreed that these things should be going on. We talked about pulling her out of the class more to work on her writing and computer time. It's just not happening in the classroom.

I showed them a journal page we worked on at home explaining it was really good for Anika but it took us about 20 minutes to write the sentence. I had to take away her pen between writing, coach her on sounding out words to spell and have her write the word with her finger first. It's was really a lot of effort on both our parts.

This was what I showed:

Then I told them how I scanned it, cleaned up in (what else) photoshop and printed it out so she could really see what a good job she did writing.

This is the clean up version:

In case you can't read it. It says, "He saw a tiger." She wanted to say, "He saw a tiger at the zoo and ran away." Isn't that awesome! Those little dots are the kid getting smaller as he runs away. I love it.

I explained how Anika was really proud of it and wanted to toss the original.

But bottom-line was what she does in her school journals are just scribbles. I mean really a page of scribbles like ....well nothing. On the first parent-teacher day when all the kids had their journals out to show their parents I almost cried because her's were like a baby's scribbles and the other kids had drawings. Drawing with words. Drawings with sentences. Well now she has a drawing with a sentence. But how do we get her to work at school? How do we get the right supports in place?

Next week is her IEP meeting with her evaluations since she's got to have one every 3 years to prove she still qualifies for services. I hope it will be productive. Her special ed teacher has some good ideas.

Now I need to meet with her teacher who is probably going to be irritated that I didn't talk to her first. I should have. I did try when I was volunteering in her classroom. Her classroom has 27 kids in it and I find it very overwhelming. I've emailed her.

Once again I feel like a kid sitting in the office waiting to talk to the principal.

Another visit from the Tooth Fairy

2010-01-14T20:46:00.000-08:00

It happened again. For the third time now. Anika lost another baby tooth. She finally managed to pull this one out on her own. It's one the bottom teeth next to the incisor.

Right away she ran upstairs and put it under her pillow for the tooth fairy. The tooth fairy did not disappoint.

She's doing fantastic in her swim class. She's really trying to do what the teacher asks. It's amazing the difference from a year ago. She can finally push the water herself for the shower afterwards! No more wet arms for me! And while she's still a long way off from mastering what they are teaching, I can now imagine her getting there someday. She loves the water so much she wants me to start taking her swimming every Sunday and every other Saturday. This was her concession when I said every Sat. and Sun. would be too much.

Funny girl.

anika

2010-01-02T15:07:00.000-08:00

I`m so glad to see you todae 2010.

Anika just typed that. She typed the title too. This is her blog and she's ready to start contributing.

A little back story on the pictures. I found out today that I won "photo of the year" on a parakeet forum where I post sometimes. So me and Anika were looking at some parakeet pictures. She really like the Christmas pictures of parakeets in x-mas trees and on Santa's. She wanted to make her own. So these is what she set-up and I photographed.

2009...good-bye

2009-12-31T13:20:00.000-08:00

2009, so where'd it go?

Christmas was really fun. It was the first year Anika was really wound up in anticipation. She crawled in our bed in the middle of the night saying, "Christmas is taking so long." It was also the first year she was able to open all her presents by herself. No hand fatigue this year.

Aunt Michelle, Great Aunt Ruth and the Grampy's came over. It was a lot of fun.

We went to indoor park and I saw Anika could finally pedal all the little car toys and tricycles! Some she could barely fit on but she can finally pedal them! Awesome to see. And she can finally do some zippers. I think her biggest accomplishment this year, at least in my opinion, is daytime potty training. She rarely has an accident and she usually takes herself or tells someone she needs to go. Now we need to get her independent in the wiping area. I think she finally has the fine motor skills but she's pretty grossed out about #2 and would rather not deal. But I'm hopeful that our days of wiping her bottom might end in the next 6 months.

Here's a few pictures from our surprise snowstorm.

Mom, I don't want to go to this party

2009-12-13T18:25:00.000-08:00

I don't wanna grow up

2009-12-03T12:24:00.000-08:00

Anika has decided she wants to stay 5 forever. It's a touch bitter-sweet. While I love seeing her grow and develop into her own person, seeing my baby grow-up makes me want to make her 5 forever too. Her babyhood was wrought with such anxiety I really don't long to return to that but now she's doing so well I could hang out here for a while.

Of course it doesn't work that way. Anika is loathe to hear that and insists her wish on a star was granted and she is staying 5 forever. Her hands grasp at intangibles as if to pull them close whenever she says this phrase, "staying 5 forever."

Though I can't grant her wish I am doing what I can to allow her to have the magic and imagination of being a kid. When she asks if fairies are real I say, "Some people thinks so, what do you think?" She thinks yes and wants to visit them. I keep telling her fairies are shy.

She's decided Santa is real. Though we've never encouraged this. Now I've promised to bake cookies with her so we can leave them out for Santa. I need to read up on how to play along with this one.

Jason and I never planned on doing these childhood games (what we considered lies) with her. Both of us were pretty serious kids. However, Anika is not. She loves being a kid and doing silly kid stuff. She wants to believe in magic and myth. I'm going to honor that as her her answer is "yes, to what do you think.

School Picture

2009-11-29T18:32:00.000-08:00

Anika is so hard to photograph these days. She often doesn't want to me photographed and if you ask her to smile she gives you "camera face". I was super impressed with her school photo.

Our conference went well last week. She's not acting out or have tantrums there, thank goodness. She has been very possessive of her para-educator who she shares with other kids so they are working on that. Academically she's doing very well. She's already reading at the measure they hope to achieve by the end of kindergarten. Her writing remains a big challenge though. They have computer she is starting to use at journal time but they have yet to hook it up to a printer so she can print it out. I think it will be more meaningful for her when she can do that and put it in her journal. I look forward to that happening.

Crafty

2009-11-23T11:53:00.000-08:00

Earlier this month I went out of town to visit some family. I thought Anika would be really excited to have Daddy all to herself. I was surprised when she told me she didn't want me to go. We were both surprised when she fell apart crying the day after I left saying she really wanted her Mommy.

Upon returning she was angry with me at first. Then glad to see me. Unfortunately her behavior is still a problem now. She's falling apart over every tiny thing. She cries and collapses to the ground when she can't have what she wants when she wants it. She's hyper at night yelling and stomping. She's seems more ataxic but it's hard to say if it's because she's not being careful or just not as steady.

Bright side is she is hasn't regressed in her toileting which we typically see with behavioral regressions.

We have a parent-teacher conference tonight so I'll be curious to find out how she's been doing at school these past couple of weeks.

4 days off for Thanksgiving. With her current behavior it promises to be a long break.

The top picture is of her with two cute finger knitted scarves from her cousin Hannah. And another picture of some crocheted mice I made for her.

Fall

2009-11-03T08:37:00.001-08:00

The dinosaur who loves rubberbands

2009-11-03T08:34:00.001-08:00

This is how Anika introducing him when showing him to people.

Aunt Lyn

2009-10-28T12:37:00.000-07:00

My good friend from college came up for a weekend visit. It was just wonderful to see her. And now thanks to her pumpkin carving skills we've got our first jack-o-laterns. Anika drew the faces and Lyn carved. I helped clean and baked pumpkin seeds.

Anika has been doing so awesome. She's been super polite and taking herself potty at home and at school. She's been able to talk through problems instead of melting down for the most part. She's been playing with other kids.

It's wonderful to see her blossoming. I knock on wood it sticks.

Unfortunately her teacher is out with the flu. That does not bode well. There is no vaccine to be found here.

We'll see out it goes.

Emergency IEP Meeting

2009-10-21T22:38:00.000-07:00

I was really impressed with everyone at Anika's school. They somehow were able to come to Anika's IEP meeting within a day's notice. Including Jason and me, there were nine of us there.

Turns out I completely misunderstood the teacher. It was an assessment not "test" and she did give Anika credit just worried about that working in the future. I'm still not sure what she was trying to say about that part. I know what she was wanting to express was how important she thinks it is for Anika to be provided some keyboard technology so she has a way to express what she knows. It was nice to hear that she's reading above Kindergarten level. Yay!

It's exciting for her to be ahead on a milestone type thing.

Bottom line the school OT will contact the assistive technology department. They will provide her with an appropriate keyboard.

Writing is being written into her IEP. They will work on it hand and typing.

Everyone had wonderful things to say about Anika. It was very nice to hear.

The short version

2009-10-18T21:38:00.000-07:00

First I have to say, Anika enjoys kindergarten. In fact, she moved back into her own room and has fallen in love her own space again. I attribute this to feeling safe and secure in her new transition to kindergarten. So some things are obviously going well.

Now, did you know the kindergartners get spelling tests? Did you know that they fail their test if their handwriting is illegible? Did you know that includes kid's, who like Anika, can verbally spell the words correctly and have documented fine motor delays?

I'm really mad about this.

The short version...IEP meeting is set for November.

Sports Riding

2009-10-11T20:48:00.000-07:00

Anika is doing so well in her therapeutic riding class. She's actually starting to spending some meaningful time riding independently. See for yourself! She actually weaved Cindar, her horse, through all those poles.

The eye doctor...again

2009-09-30T14:59:00.000-07:00

Good news is that the vision in both eyes was better this time. Also her depth perception scored better too. The eye patching is helping her. Bad news is that her left eye is still not where they would like it to be so more patching.

Not big deal just not so fun. Anika tolerates it well most days though she complains quite a bit. This is our third round of patching so I think we are all sick of it.

But it's helping and that's what really matters.

Umbrella Fairy

2009-09-28T20:52:00.000-07:00

I had to edit this post to include Anika's description of herself. I only remembered it after posting this.

"I am the CONTRARY FAIRY."

9 MM - It's not just a handgun thing

2009-09-24T08:52:00.000-07:00

Anika had her 6 month check-up last week. Her teeth look good they say. I wonder if I should be getting her a different dentist though. It's been 2.5 years since she had an x-ray. I thought she was due for a full panorama old at five. She goes to a SN clinic at the hospital where she used to do all her therapy. Her old dentist retired.

The new dentist said that she needs different kind of x-ray to check on the growth (or lack of) in her lower jaw. He said perhaps a referral to an orthodontist was in order. At 5 years old, really?

But we have been monitoring the gap (technically called and over-jet I believe) between her bottom and top teeth. And it's now at, how did you guess, 9 mm. Being terrible at my metrics I finally looked it up.

1 mm = 0.0394 in 9 mm = 0.3546 in (9 x 0.0394)

1/4 = .25

3/8 =.375

I knew her gap was big and has grown over time but I am a little horrified to realize it's over a quarter of an inch and just shy of three/eights.

Her new dentist said that her finger sucking is not only pushing those top teeth out but hindering the lower jaw from growing.

Her SLP said you'll know when kids are ready to stop sucking when you can remove their fingers at night we ease...no suction. She's like a little vacuum. You take her fingers out, more accurately pry them out, and 2 minutes later they are right back in.

But since she shows no signs of slowing down we are going to try (again) behavioral supports to stop the finger sucking.

I just got a call back from the dental office. They will do a pano-xray there. That's what her previous dentist wanted. I think the new guy was talking about something else. But at least this is a start.

Maybe we should go back to the cranial-facial clinic? I don't know. This is what a struggle with so much. Our medical benefits are very good. Dental very limited. Orthodontic-non-existent.

Well, now you know how my brain work on this stuff.

Next week it's back to the eye-clinic to check on that weak eye.

Following week will be the dental x-ray.

Week after that will be to meet with a behavioralist.

I try to limit her appointments but sometimes it's just not possible.

KINDERGARTEN!

2009-09-18T10:44:00.000-07:00

We have one week under out belt at Kindergarten. I think it's going to be a great year for Anika. There were a few kinks, like her bus not coming the first day but overall it's gone pretty smoothly. I'm really impressed with the support she's getting at school. I think more than she needs actually but are watching starting to scale back as necessary.

We has a para-educator assigned to her for most to the day. She shadows Anika on the play-structure and assists her as needed. She assists Anika at lunch time though the are working on Anika carrying her own tray. She also assists Anika with toiletting. They have her on a schedule since she doesn't consistently tell us when she needs to go. So far no accidents, although she did come home in her spare clothes one. When I asked if she had an accident she said, "No, I just feel in the potty before I got my pants down." Accidents happen!

I asked the principal how Anika was doing. He phrased Anika's independent spirit and said what a great student she is. Words a mom loves to here.

The entire school has a really good feel...very caring and dedicated to the students.

Right now Anika is doing very well. I was nervous about the two break between day camp and Kindy but it fun. I packed it full of last minute summer fun. We did Oaks Park, a local tiny amusement park with rides and a skating rink. Roller-skating. Anika and I rollerskated together. She's been asking to do that for two years. I was so nervous for her but she did awesome. By that I mean, she fell safely and happily over and over unfazed. All new skaters fall a lot. After about 45 minutes she was done. She said skating is really hard. I did warn her.

We also went to Enchanted Forest, a theme park not too far away. And we hit the Oregon State Fair, the Zoo, and OMSI.

She finally started taking herself to the potty again and stopped having daily accidents. She's hit this point several times but regresses after a few weeks. We'll see how it goes this time.

She lost her second lower front tooth!

She's started asking me to follow her instead of just running off when we are out. Love this development.

Probably lots of other new developments too that I can't think of right now.

It's a good spell right now. I really think her school is a good placement. So good times...good times.

Summer's End

2009-09-01T20:40:00.000-07:00

I really can't believe how quickly this summer went by. It was a strange summer, for me at least. I expected Anika to really shine in summer day camp. She was doing so well interacting with her peers at the end of preschool. But that didn't carry into the summer. She did make one friend over the summer. She met this little boy her first week of day camp. She liked him so much she didn't want to switch to the day camp at other location with only 4-5 year olds. We did try it for a week. She missed her friend.

It was nice with her at the community center across the street from us. I could sit outside on our porch taking a break from work, drinking coffee and watch her play. I noticed that playing with her new friend mostly consisted of her following him all over while he followed the camp teacher. I found out he has autism. But according to Anika they would get into mischief together, not listening to the teacher. They would run around and look at trees together. It was nice to see her get attached to an individual child.

I'm guessing it was/is the looming change in her upcoming kindergarten class that kind of hung over us all like a dark shadow. Ok, I've always been a bit prone to melodrama so it's coming out now.

During a crazy heat wave with temps up to 107 (this is Portland!), Anika moved into our room. She's never moved out. She will say, "I'm in my room in Mommy's closet." Yeah, my walk in closet is now her room.

It's the first time since she was 6 months old that she's slept in our room. She's always loved her own room. I blame in on kindergarten.

We attended her school open-house to welcome new students and parents. It was just crazy seeing the two girls sitting opposite us quietly chatting and eating their pizza. Jason whispered to me, "Are they five?"

Anika recognized a girl from her day-camp. My stomach kinda dropped a bit when I realized this child was Anika's age. At the day camp I thought she was 2 years older than Anika. Our daughter is a very young five.

While the principal talked all the kids had gathered up-front waiting for the puppet-show. They all sat down waiting and watching. All but Anika who tried to go up the stairs to the stage, tried to play the piano, tried to leave the cafeteria and generally ran amok. We watched the school counselor and other staff gently redirect her over and over. Block her way to places she shouldn't be, etc...At this point the siblings of the kindergartners, the two and three years starting getting restless too. Fortunately it was now time for the puppet show. I was impressed that she was able to sit and follow along well for something that did interest her.

I just keep wondering how she's going to be able to succeed in school with her limited attention, her lack of social skills and her penchant for pretending to be a baby.

This summer has also been very difficult for her and me personally. She really fell in love with her daddy to the point that she sees me as interference. I think she told me she loved me once all summer, when I had a migraine. She's told me on numerous occasions that she doesn't love me, ONLY DADDY. It's hard. It's really really hard. I expected this at 15 but not 5.

We did all have a very nice family vacation in Missoula. I'll post some pictures.

Oh yes, other fun summer activities. Eye-patching for two hours a day for two months. She hates it but tolerates it well most days. Hopefully it will succeed in strengthening her other which is starting to drift and isn't seeing as well.

This Just In (Out)!

2009-06-16T21:25:00.000-07:00

Ani lost her first tooth today! She lost her tooth without knowing it at her day camp today, so we put this picture under her pillow so the tooth fairy will still come. She's so excited that the tooth fairy is coming tonight. She kicked me out of her room because she was hiding from the tooth fairy. I don't think she believed me when I said she won't come until after she goes to sleep.

Summer is Here!

2009-06-16T12:30:00.000-07:00

Anika's last day of school was last Wed. I think I was sadder than Anika about it. I can't believe how far she has come. She's started a summer day camp program this week. It's just 4 hours day. Since it's a mix of 5-12 year olds I thought it best to keep it short for her. Next week she'll start a day summer camp for 4-5 year olds.

She thrives on stimulation, structure, and the company of her peers. I couldn't imagine not having her in some kind of program for the summer.

Sunny survived his isolation at he facility. He's home now. Isolated again. Poor kitty. We can't really tell a difference in him but we only see him briefly each day. He does seem like his fur is growing in a little better. Thursday we'll be able to come out when Anika isn't around.

Here's a video I took of Anika singing one of her favorite songs she learned at preschool. I gave it copy of it to her teacher as a thank you on the last day of school. Her teacher played it on the computer and all her friends gathered round watched and giggled. It was so cute...just like my Anika.

Hot Kitty

2009-06-02T21:08:00.000-07:00

Does this kitty have allergies?

No, he's advertising for a radioactive treatment for feline hyperthryoidism by VDIC. I thought it was a funny picture but I guess it's better than the reality.

Our recent adoptee, Sunny, who survived his weeping-abscessed-tumor had a rare life-threatening reaction to his hyperthyroid medication. We almost lost him. Our vet told us his only option was the radioiodine therapy. So he'll be boarded at the VDIC facility until Friday when his radiation levels will be low enough to come home. We can't visit him but we can check on him with the cat cam.

Pretty much all he does at home anymore is eat and sleep so it's not too much different to what he doing there.

He'll be "hot" for two weeks after he comes home will have to be in isolation. Anika won't be able to be around him for five weeks.

The bright side is that this is considered a "cure". A small percentage need a second treatment. As long as he doesn't have another underlying condition we don't know about this should really help him. I sure hope so.

Numbers

2009-06-01T21:04:00.000-07:00

It's time periodical check-in's with Anika's specialists. Last Friday Anika had her annual eval with Shriner's OT and PT. They both talked about have mildly Anika is affected and how she's doing well. One of my concerns is not having her in private PT or OT right now. They both said not to worry about that. Her weekly Therapeutic Riding and regular swim classes are great. She had speech eval that said the same 6 weeks ago although she did recommend Anika get weekly speech sessions for articulation in school.

Then you get the numbers. She was scored in the articulation at 1 year and 3/4 behind. OT has her between 1 to 2 years behind. PT said don't even bother comparing her to her typical peers because she is going to be behind, sometimes way behind them.

It's hard for me to reconcile that she's so behind and it's just ok. But I guess that's just her disability.

The PT said he thought it would be a good idea to get her a medical stroller for distances because of her fatigue factor. I agree. She's outgrown her macclaren already. I can't carry her that far anymore.

Oh, the OT said she seems like she's got the ADHD too. She has a son with it too. She said that it's hard to tell how much comes from her physical disability.

Today she had a 2-year follow-up with the neuro-developmental clinic. We saw a great doctor who was impressed with Anika's progress. He agreed that ADHD seems likely and we should watch and wait to see how she does in school.

He agreed that her episodes warrant further tests during one. She's actually coming out of one now but I just didn't want to pull her out during her last couples of school. Hopefully we'll be able to catch one in the summer.

He also agreed that a medical stroller is a good idea for distances and fatigue. Both he and the PT she saw brought up she might want/need a wheelchair for fatigue where she's older. It was strange to hear that as she walks so well now. But her strength and stamina have increased so much over the past year who knows where she will be down the road.

Bottom line Anika is doing really well. She's bright and funny. She has a great sense of humor. After swim class, for example, she will push the button to turn the shower on. By the time she gets turned around and positions herself stably in the water it shuts off. (It's because she can't push it hard enough to get it all the way on.) She laughs about it and tries it again. She turns it into an old-time comedy routine. She doesn't worry that the other kids have no problem (or that they are all 1 to 2 years younger than her).

I wonder when those types of things will bother her. As bright as she is, emotionally/socially she's pretty immature. I hope I can help foster that resilience as she gets older and more self-conscious.

The IEP and backyard butterflies

2009-05-19T22:32:00.000-07:00

We finally had Anika's first IEP meeting to determine what kind of supports she'll have in place to make her kindergarten year a successful one. Up until this point we've been dealing with different county agencies contracted to do the same thing but at preschool (ages 3-5) and at home (birth to three aka early intervention) and they've been IFSPs.

Finally we are dealing with the actual school district. I've heard many horror stories but so far it seems like a picnic. After trying for two years to get her an aid for the playground we finally are getting one without even asking. Her coordinator observed her playing, falling and retreating to another activity. The goal is for Anika to independent but not to throw her into it but have someone on the playground not just for Anika so she won't be totally singled out but to keep her safe and teach her how to advocate for herself. Like telling other kids not to push she's slower and that's ok.

I'm really excited for upcoming year. She'll be getting services 1x week now instead 1x or 2x a month. They'll be provided in the class room so she won't be missing out on the regular classwork.

I also have to say I will MISS her current teacher and head start program. They totally stepped up to provide the services that we couldn't get the county to program to provide or include in her IFSP. Her teacher has been such an advocate for Anika. On days when Ani has been really wobbly and having a hard time she let hold her ear-rings during nap to help settle her. She gave her lunch for two years to sit in on the IFSP meetings and meetings with the PT/OT. She's made sure Anika have been included and supported. I can't imagine a better, kinder teacher. We've been so lucky.

Below are some pictures of Ani's class letting the class butterflies go in our backyard. We are so close to school and across the street from the park where they going to let them go. I love the personal touch.

Sometimes

2009-04-28T10:28:00.000-07:00

I look over at the birds cage and see this:

Then for a horrible moment i think Shelfie died.

Apparently Dave does too because he comes and does this:

Bird CPR.

Then I'll look at Anika and she'll be doing this:

Sometimes it's funny around here.

So many things

2009-04-17T23:05:00.001-07:00

There are so many things I want to write about. Little things that happen during the day but by the time I'm free at night my brain has other ideas. It's funny, since being laid off I feel like I have less time. I'm not sure how that is possible but apparently it is. Oh and good news on the job front. Oregon has moved up to #2 in unemployment. Look out Michigan here we come!

The sweetest thing Anika said to me, "Mommy, when I grow up, even after I can live on my own, I want to live you and Daddy so I can help you with your taxes."

Of course the same sweet kid had a huge screaming tantrum on the floor because it was time for a potty break. She still needs reminders and still as Jason puts it, "denies her humanity".

That is Anika in a nutshell. Sweet, funny, charming and observant and painfully stubborn, willful and defiant. She wants to learn to swim by herself without her teachers help. Going down, over and over, coming up choking out "Wanna to it myself please." On the other hand she wants us to dress and undress her (she can do quite a bit by herself), carry her, put on the potty, etc..

I went on a school field trip. I could see things are harder for her. She tires much more quickly and she's slower and she falls more. But I was amazed how after the field trip she went straight to dance class and rallied. She followed directions. She ran across the gym and jumped over the rope. (Heart in my throat for that one.) They lowered the rope to ground for her but she jumped. She did this crazy obstacle-course with creativity and enthusiasm. And at the end when they had to jump over a 6 inch high pole, she did it! I know she was exhausted but she pulled it out.

I wonder does she fall apart at home because she expends so much energy out in the world?

But that still leaves me tired!

This and That

2009-03-24T20:10:00.000-07:00

This past month we had flu, ear-infection, lice and tomorrow, for Jason, surgery.

I'd been trying to take Ani out since we've spent so much time cooped up recently. But today she didn't want to go out. Instead we took some silly pictures.

Happy Birthday Anika

2009-02-25T19:44:00.000-08:00

I want to say a thank you to everyone for all the wonderful birthday wishes. I put up a gallery of photos of her at school today. I got there a little before snack time and took some pictures of the kids doing some silly motor activities. I was really impressed at how well Anika was interacting today. She helped her friends put away their beds after naptime. She choose a friend to help her pass out beanbags and rattle eggs. She was really listening and participating. It was absolutely wonderful to see.

She handed out cupcakes at snack time. She only did a few as it took her quite a while, she was very careful.

Here's a couple pictures of her with her favorite present. That's chocolate on her face from chocolate chip pancakes. She woke-up very excited at 6:30 to see the balloon daddy had left for her in her room.

On her last night as 4...

2009-02-24T22:40:00.000-08:00

The only pictures she would let me take were of her being silly throwing herself around on the bed. This is our girl on the last night of four...

Then I snuck in and took a shot of her sleeping. Yes, she still sucks her fingers at night.

Ani's website

2009-02-23T17:59:00.000-08:00

I put together a new photo gallery of Anika on her website. I also overhauled her website. It was long overdue.

So check the gallery and let me know what you think of the interface, please. I've been trying to find a gallery template I like.

It's our birthday week. Her's and mine. Yeah.

I asked her to draw me a picture and this is what she drew.

I'll have to put of a better picture later but I was impressed that she drew me a person with food in their tummy and a baby coming out of the tummy head first. The baby is the pink blob on the top. She usually perfers abstract drawings which I really do love. But I like her to show of those fine motor skills sometimes. I'm always haranguing her to do OT exercises which usually consist of drawing people. I know how much she dislikes doing that so I was really touched that she knew I would Iike it and drew it for me. She's chewing on her "chewy-t", in case you are wondering.

She's keeping me on my toes today so I'll leave this short.

It must be catching

2009-02-16T21:51:00.000-08:00

Not really. Completely unrelated, our other orange boy, Iggy, got a couple of small tumors removed from his chest. Hopefully nothing serious, the vet doesn't think so but the biospy will tell us for sure.

Sunny is doing great. Stitches are out. It's amazing how he's taken to being an indoor kitty. He only asks to go outside ever once in a while. Next up...a bath!

Meet Iggy's Indoor Nemesis

2009-02-13T13:55:00.000-08:00

This was Anika's description of Sunny after he started following Iggy and growling. She also chose his name.

One of our past-times is to spot kitties on our walk to school and back. About 2 months ago we spotted this ratty looking orange cat. He came over to say hi. At that time he had a nasty abscess. Three weeks ago we saw him and again. He came to say hi. His abscess was nastier than ever with a huge lump around it. It was clear he had no home and needed attention.

Long story short, he's joined our home. His abscessed tumor has been removed. He's now on thyroid medication. I have to give a huge thank you to the Multnomah county animal shelter. They gave Sunny over $1000 worth of care so we could adopt him. They thought the tumor was malignant and because of his age and poor health he wasn't adoptable. But they knew we wanted him but couldn't afford that kind of vet bill. He would have been euthanized. It came as a wonderful surprise that his tumor was not cancer and he should have many happy years with us.
I can't thank them enough.

Almost

2009-02-03T11:40:00.001-08:00

I've had so many almost posts lately. Ideas started and stopped abruptly from outside interruption or internal blocks.

With Anika rapidly approaching her fifth birthday I'm reviewing milestones and benchmarks. Preparing for the transition to kindy is just so monumental to me now. I can't imagine college being more emotionally wracking. Well, that's a little bit of joke but the official start of school feels so huge. Never-mind the fact she's been in preschool for a year and half, this just feels different.

We recently met with her transition coordinator from the special ed department. She will be overseeing the IEP process. She's an OT and will be coordinating with other services as needed. Anika will be main-streamed. Academically she's right there with her peers, even ahead in come areas. I couldn't believe it when her teacher told me that she might be a candidate for the TAG program. I figured it had something to do with attention problems but it's the gifted program. So nice to get hear that.

So far her transition coordinator is recommending an assistant on the playground and on stairs to keep Anika safe. She'll also be taken to lunch about 10 minutes early with a handful of other kids who need assistance. She's have a thicker tray as an accommodation and someone to help her carry it if necessary. At this point she can't carry without drops and spills. She'll also be on a food safety protocol to specify all food be cut to nickel sizes and all fruit peeled as peels make her gag.

She'll also have social goals and possibly be part of a group social class to help her with better interaction with her peers.

The Ani-monster

2009-01-15T21:27:00.000-08:00

I can't believe it's been a month since I posted. We had crazy crazy snow. It was to the post everything was cancelled which was really a bit of drag. Anika had three weeks off because of all the snow along with the X-mas break. Man was she stir crazy.

She loved Christmas. She got some very nice gifts from her grandparents and her great-aunt Ruth. She really really loves the DVD box set Growing Up Wild by TimeLife. It's very informative and entertaining. Thank you Ruth! She also loves her fabulous new doll house. Thank you Marty and Frances. And she loves her new super cute, super cozy robe from Aunt Shana.

I've been battling insurance and neurologists to get an extended eeg done. Cross-fingers we are getting somewhere but I've thought that before. This time I've recruited a nurse case manager to help us resolve this. Fingers crossed.

Our next big step is Kindergarden. Really, I can't believe it. She'll be five next month. She's growing up. In Portland we can apply for a lottery to get into schools outside our district. We also need to make the transition from IFSP to IEP. Google it if you don't know. Suffice it to say I'm pretty busy with researching schools and services available and health care.

But here's some pictures.

Anika in the Winter

2008-12-14T14:12:00.001-08:00

Let's do the numbers

2008-11-03T19:01:00.000-08:00

Number of our family members who had doctor appointments today: 3

Family members: 3

Time spent in waiting rooms: 2 hours

Number of tantrums today: 5

Time spent in exorcist style tantrum to end the day: 15 minutes

Ani in the fall

2008-11-01T21:17:00.000-07:00

Happy Halloween

2008-10-31T21:06:00.001-07:00

Dizziness is coming...time to slow down...

2008-10-13T19:54:00.000-07:00

A repeat EEG to get a baseline for Anika was done today. It started off poorly when we arrived for our 10:45 appointment only to be told, "Your here early...very early. Your appointment isn't unit 1 pm." One of those common scheduling snafus. Once again, Anika took the news in stride while I fumed away. But those extra hours hanging around seemed to wear on her. By the time our appointment rolled around she was in tears about not needing to use the potty. Even after she went and we were down she continued to cry for a while. I'm guessing she was feeling anxious about getting all those wires glued on her head. But she handled it very well and followed directions about closing her eyes and breathing funny very well. She only broke down again when all those sticky wires off. She really hates having sticky things like band aids and say electrodes pulled off her. Then it was onto hippotherapy. Once again she did a great job of following directions and doing tricks on her horse.

Tonight as we were talking about what we are doing tomorrow, she made a joke. "I'm getting another EEG!" This prompted a talk about she had the EEG and what it was for. I told her we were trying to figure out what her brain is doing when she feels that way. Then we talked about how the brain tells the muscles what to do and how some peoples brains don't talk to their muscles as quickly as other peoples. She asked what her brain says when you are feeling dizzy. I asked her what she thought it said. She paused and smiled then said, "Dizziness is coming, time to slow down."

I am worried that it might be coming too. She's been treading up in the sensory seeking. She's not looking as steady as she was a little while ago. But overall she's still doing well. The one exception being the pottying. She's had pee accidents on a daily base for a few weeks. Not at school though.

I tired multiple approaches that did not succeed, frustrated: do you want to go back to wearing diapers! reasonable: everyone has to go potty...everyday.... concerned: What's going on? Are you ok? Can you feel it when you need to pee?" Anika's answer is almost invariably the same. "I don't NEEEEEEED to go potty!!!" She says this while she is on the potty and peeing. I don't get it. But after some discussion with her about what to do about it she said that I should make her go. Remind her, take her and make her go. And I've done that the past few days and she stayed dry but she still cries and yells about it and denies it. Weird.

But overall we've been having fun together. She told me she loves me three times this week which is a record.

And if she is trending down, we've got some better tools to help her cope with her sensory seeking and distraction. And then there will be trending up to look forward to.

Pictures

2008-09-28T19:40:00.000-07:00

Back to School

2008-09-25T20:35:00.000-07:00

Anika had a stellar start to the new school year. She's talking to kids more. She's more confident. She's stronger and safer on the playground. She's not wearing diapers as she was last year. She can even get herself on and off the potty without assistance. And best of all for me, when I pick her up she comes out and asks me where we are going. When I cue her to get her jacket, blanket and horsey, she does it. She walks out with me nicely. It's so wonderful.

We also just discovered that she can sit in a big kid swing fairly stably. We are practicing two minute stretches swinging pretty low before she gets in the baby seat where she can just relax. She can also take off the lid and squeeze her toothpaste.

It's really cool to see her getting more independent. She even accepted a child quilt instead of insisting she sleep with her baby blankets. She was getting way to big so I'm glad she can be a little warmer when she sleeps.

Her independence is coloring her view on things. She told me not to clean the poop off the parakeets perch because they clean it themselves. When I pointed out they don't have hands she pragmatically said, "They can pick it up with their feet and give it to you."

Walk N Roll 2008 - Thank you

2008-09-15T21:25:00.000-07:00

Heartfelt thanks to everyone who supported Team Anika. Your support means the world to us. Special thanks go out to Grandpa Marty and Grandma Frances. This is the third year they have walked with us on a surprising tiring mile long walk. But more than that they are the best grandparents to Anika. They are always there for her Christmas, Birthdays, Thanksgiving you name they are there. Even more than that they make sure they have a "grandparents day" with her at least once a month where they take her out and do fun stuff like painting, the zoo and OMSI. And yes there is still more, for the past two years they've covered her bi-monthly hippo therapy that our insurance will not cover. I can't imagine better grandparents for her. They love and accept her unconditionally. I am so grateful they are in our lives. Thank you!

Team Anika 2008

Daddy and Anika - He volunteered his photography services for a 3rd year.

Happy she won a game before the walk. Big thanks to the Key Club kids. They came out and did face painting and we so sweet and encouraging running the games.

And a rare quiet moment for our little whirlwind girl.

Did I ever mention

2008-09-07T20:07:00.000-07:00

Did I ever mention what an awesome Dad Jason is? No matter how busy he is he always makes some time to spend with Anika. Eternally patient with her way beyond my limits.

Always reading to her. Taking time to look at pictures of ticks online.

No way I'm going to do that. Explaining the world to her.

Willing to be a little crazy when the time is right. Not afraid to be silly.

Always encourgaing her and loving her just as she is.

She's lucky to have him and we are lucky to have her.

Weirdness, worries and wobbliness aside it's good

2008-09-06T22:29:00.000-07:00

It's been a while. I was lost in conflicting ideas and theories. You know everyone has an opinion. Half the time I feel like a negligent parent and the other half I feel like an over-protective munchhousen by proxy mom. Perhaps it means I strike a good balance. Ha!

Anika is working on learning to ride her bike. She has do maybe three pedals by herself. Her lack of strength is all that's holding her back. Unfortunately it's hard for her and she's reluctent to practice. But she'll get there.
She's very proud of her running skills now and repeatedly tells me how fast she and how well she can run. "I can even pick up my feet now!"
A favorite activity has been picking flowers together on Sauvie Island. She loves flowers. She also loves bugs.
And she loves our parakeets. Dave eats out of her hand and she tries to pet Shelfie. Shelfie does not wish to be pet. She bites Anika but she is so gentle and Anika so loves input that it doesn't phase her. I have to protect the birds from her love
She takes her pet watching duties very seriously.

She's doing very well right now. She has another one of her vague episodes, spells or whatever last week. She started having accidents . She started having tantrums...hour long events. She got pretty wobbly. She asked for her braces (orthotics) she hadn't worn them in months and outgrew it. She ate even less.

So we did what we could and she got a spot egg and urine/bloodwork. We wanted a 24 hour egg but that wasn't in the cards. In fact I just found out that they didn't get enough urine and did not tell us so we didn't even get all the labs run that we wanted. It's frustrating but at least it's just pee. I was just so awful restraining her for the blood draw.

And as usual all we have are more questions. Her eeg was mostly good. No seizure activity. But it did have some slowing of the brainwaves. Her last eeg at 2 was completely normal. Her neuro warned us it would likely be abnormal because of her neurological issues but it wasn't. So now it is. But because she was only two the last one can't be used as a baseline. So we will have to repeat the egg when she's doing well to establish a baseline. Is slowing of the waves only there during an episode or is it just her normal. It's consist with CP or developmental delays. So it's really the same old same old we are let wondering what is what.

On the positive she's now more stable and nearly tantrum free. Taking herself to the potty again and accident free. She's eating more. She shared strawberries with me tonight and asked for more three times. It was like the best present ever. I love strawberries. It was so awesome to be able to share that with her. She said, "Mommy I love strawberries." It was priceless.

And this afternoon we were able to eat at a cafe and she ate while being reasonably well behaved. Ok...I had to spoon feed her while she played to get her to eat but still it was food and she wasn't yelling.

Interestingly she recently said, "I don't like to eat much. I just like to drink a lot." Why?

Next week she'll be doing Walk N Roll. Thank you so much to Team Anika supporters. This is our third year walking and rolling in her stroller. You can check our fundraising progress here.

The next week she'll start her preschool for her second year. This time she'll be the big kid. Well she'll be the same age as the rest of the class but she'll know the ropes. I really can't praise Headstart enough. It's such a wonderful program and we were so lucky to get in.

So live goes on weirdness, worries and wobbliness alike, it tools right on.

I'm grateful for our good days and grateful for all she's accomplished. I'm grateful for all the support we've received from family, friends, other parents going through their own strange journeys, trying to find take things as the come at hand without over thinking too much. One of these days I'll get that down.

A few words

2008-08-02T21:41:00.000-07:00

Anika is doing very well right now. I think she had a mild episode at the end of June/being of July. But it mostly affected her gross motor and balance. It was short too.

She's running all over now. She says she's a big-girl and no longer wants diapers at night. She wants big-girl pull-ups. I found her some cholrine free ones and that's working great. Mostly accident free during the day...

She is using the step stool and getting herself her own drinks of water sometimes. The floor gets a little wet sometimes but it's really awesome seeing her becoming more independent. She can open the fridge but the only thing she ever wants is pediasure. But she's 34 pounds now and is not all bony which is awesome. She's eating more table food and feeding herself more and more often. She recently had an ear infection and wasn't hungry but if we fed her she'd eat. Oh and she can pour her pediasure into her own cup now and mostly without spilling! She's so proud of being a "big girl".

She's started turning lights on for us. She can reach them and use them apropriately and is pretty pleased about that. I can't believe I ever worried about her asking questions. We are swamped with questions every day.

I'm really excited about her gains but afraid to let me myself be too excited because she gains and loses historically. But you never know...maybe this time it will all stay for good.

New haircut

2008-07-14T21:30:00.001-07:00

My words are few lately. Luckily I took some cute pictures of Anika with her new hair cut.

bits and pieces

2008-06-29T09:35:00.000-07:00

2008-06-18T19:53:00.000-07:00

Things have been crazy for a while. My time has been limited and my mind has been full. My carple tunnel/fibromyalgia/whatever has been acting up.

Anika had two wonderful last weeks of school. I talked with her teacher the last day of school, June 11th, and she told me how wonderful Anika was doing. She was making eye contact with her friends, playing with kids on the playground, asking questions. A favorite game, was to sit on the suspension bridge on the play structure and have a friend on each side jump up and down to bounce the sitting child. She told me they bounced her to California to visit Willow and a friend from school who just moved there too.

Her teacher was amazed at the difference in Anika from April and early May. I have to back track a bit to make this next point. At Anika's end of the year evaluation Jason asked if her differences stood out. The teacher said in the classroom not a lot but when you saw her on the playground her difference were noticeable then. She said there was a woman from the school who was in Anika's classroom in April who noticed Anika's differences. This woman has a child with CP. She asked about Anika right away. She noticed her delay in speaking, poor eye-contact, and unsteadiness. It's interesting how once you know what to look for these little things jump out at you. Anyway, the same woman was in Anika's room again on the last week. The teacher told me how amazed and bit jealous she was at the huge improvement with Anika. The teacher said apparently the type of CP her daughter has doesn't make such quick improvements. I my heart when out to this woman who I have never met because I know that jealously I do and I hate having it. But I think she's on to something...I don't know if there is any CP where you can improve that much. Of course the woman didn't know when she saw Anika she was actually loosing skills. Anika is so variable it's strange.

Anika has also been doing well at home. She's finally asking "WHY" questions all the time. All the time or she asks "What are we doing do?" "What are we going to do after that?" I really never thought I could get sick of her asking questions but after taking her through 3 full days s what we were going to do...I had to say I don't know. She's also asking "What does it mean?". Driving her home from school yesterday she was listening to her favorite, Gary Numan, WE ARE SO FRAGILE, was on. She asked what fragile meant.

Me: Easy to break...something you need to use gentle hands with...delicate.

Anika: Gary is fragile! Why is Gary fragile?

Me: All people are fragile sometimes...we get our feelings hurt. And sometimes we get our feelings hurt really easily.

Anika: Sometimes I'm fragile and I cry.

Me: Yes, that's true.

Anika: Some of my new friends were fragile and cried today.

Me: Why did they cry?

Anika: Someone forgot to use gentle hands. Someone forgot to use their quiet voice.

Me: Oh...What did the teachers do?

Anika: 100 friends were crying today (she's laughing and being silly).

But there you have it. A conversation. Wow.

Her new school is going ok. Everyone at the school was very welcoming and they are accommodating her with cut food and providing scheduled potty breaks and help in the potty. It's 17 new kids from her meet. She doesn't remember any of their names yet. I learned a couple of names when I picked her up early for SIOT.

The longer hours, Monday and Tuesday I couldn't get her until 5:10, are hard on her. She's had big melt downs at home and been very tired. I will be able to get here earlier though once work quiets down.

I'm guessing it's the transition but she's definitely been declining a bit. Not a lot, just more melt downs and he had a pee puddle accident yesterday. She's been more sensory seeking and chew crazy and little more unsteady. There's been a couple days she said she felt dizzy and wobbly. She could be heading for an episode but at this point I'm going with normal transition difficulties.

At SIOT today she had a wonderful session. Her OT actually got to her chew a little fruit. She even willfully ate one piece of cantaloupe voluntarily. She took a couple of tiny bits of watermelon and honeydew before spitting the rest out. This is HUGE for her. It's the first time I've seen her eat melon in two years. I'm really excited about getting some direction to help her with eating. We also are going to see another feeding clinic in August to help figure out what to do about her eating or lack of. I'm really glad about that.

Other recent accomplishments:

Suck spaghetti noodles through lips!
Memorized her phone number!
Opened the refrigerator for the first time by herself!
Learning to add one with the numbers to 20!
Play twinkle twinkle little star on her keyboard!

Here's a video in case you are wondering about her favorite muscian, Gary Numan. I'm trying to wean her off Gary but he's all see wants to listen to in the car. We take turns now. I love Gary but even I can only take so much.

This is my favorite Gary video back when he was just a skinny young thing. I was so excited to see it back on YouTube after being gone for over 9 months.

Goodbye Willow...we'll miss you...

2008-06-01T19:54:00.000-07:00

Anika's best friend moved away. Last weekend she celebrated her 4th birthday early so she could be with her friends. It was a great party and Anika has now been introduced to the wonders of Chucky Cheese.

This morning Anika was singing, to the tune of Barney's Theme, "Stacy and Noah and Willow they're a great fam-ma-lee...Willow's my best friend too. "

They are coming back in August be I will miss them dearly.

Anika is right...they are a great family but she did leave out baby Rowan. Almost a year old now!

Happy Mother's Day

2008-05-11T22:21:00.000-07:00

Going to the Coast

2008-05-04T22:03:00.000-07:00

I really can't say how much I enjoyed our overnight get-away. Anika did fabulously and had a wonderful time. It made me so happy seeing her excited and having fun. The only thing I would change is going for one night. Next time we will definately do two nights. Too tired to say much more than that. I just loved seeing her light up. Of course, I love the ocean too. Getting away as a family was alot of fun. We definately need to do it more often.

Spoke too soon

2008-05-03T08:36:00.000-07:00

Yesterday afternoon her teacher called me and asked me to come get her because she fell and hit her head. The teacher told me she was off all day and hardly ate. The fall seemed minimal but she refused to walk afterwards. She perked up when I got there but was definitely off. And again she hardly ate dinner. Around 10 pm she woke up crying and inconsolable. She was having another "night terror". It's the third one she had this month and the 2nd one this week. It seems like she gets them mostly when she's off.

We head for a short overnight trip to the coast today. I'm hoping it will go well and be fun for us all.

Graduation Day

2008-05-02T13:52:00.001-07:00

Yesterday Anika completed her "pre-goldfish" swim class. I'm thrilled that she graduated and will move up to "pre-penguin" class. It was interesting to see her this past week in the water. The class started in April and she's always loved, loved, loved the water but this time she was really flat. No smiles. She'd say, she didn't like the class but couldn't say why. She still did well.

Now with hindsight we know she had a regressive episode. And she' s totally coming it out of it which thrills me to no end. This week, she finally smiled in her swim class and she talked just a little to some of the other kids. It's a strange this to witness your child slipping away in such an insidious manner. She will be seeing her new neurologist at the end of the month to discuss this.

But meanwhile, she feed herself some dinner this week. She ate lunch at school. Yesterday was the first day she made it without an accident in about three weeks. I'm glad she's on the mend.

Jumping Through the Ceiling

2008-04-28T19:44:00.000-07:00

Last night Anika told me when she grew up she would jump so high she would jump all the way to the ceiling. Then she added...all the way through the ceiling. I thought would make a good title for her blog. Since I make graphic headers all the time for work I thought it only fair to take some time to make one for her and me too.

April has been a rough month. She's just been off. We've had regression in potty training and eating, highly dis tractable, sensory seeking, and lots of tantrums. Although she is aware she isn't listening well...I get the feeling she's really not totally in control of herself. Her language is also mildly affected...we are seeing more switching pronouns and it taking her longer to formulate what's she's trying to say. I haven't seen her say goodbye to a single friend all month at preschool during pickup time. She can pull it together for short times in quiet settings one on one but the big picture is really down.

We've put a call in to her neuro so we'll see what he says.

It's hard during these down patches. I wish I knew what caused them...how to stop them. sigh

So an uplifting header was due. And here's an adorable picture of her.

Pancake Puffs

2008-04-23T21:27:00.000-07:00

I heard from Jason that Anika wants to sell pancake puffs when she grow up. She used to want to be a port-a-potty truck. No foolin'.

Today she told me she wants to have a pink car when she grows up.

She told her flower friend that she could not play with it because she was dozing. Her flower friend replied, "Oh well." Then asked, "Will you play with me when you wake-up?" Anika told it, "I'm doozing now but ok when I wake-up".

She likes to pick flowers and call them her flower friends. This particular flower she picked because he needed a friend. Her conversation with the flower friend continued on:

FF (with the slightesst distress in her voice): I don't know how to get in here (through car seat belt). Can you help me?
A :(flat tone) I'm dozing, I can't right now.
FF: Oh! I don't know how to...
A: I'm dozing.

I overheard her pig tell the snake it was afraid it was going to eat him. But her snake reassured it that it was just going to give it a big hug. But again she changed the tone of her voice when playing. I think that's pretty new for her. Even with her regressions she moves forwards.

She's been sick, pinkeye, cold, ear infection. She seems pretty well but is still super sensory seeking and having accidents.

So it's nice seeing progress too.

Sometimes saying goodbye is kinder

2008-04-23T19:33:00.000-07:00

I talked to my contact at the humane society today. After checking on him she told me that he's in a communal room with other cats and is getting along with everyone. He's using the litter. He's relaxed. He's full of purrs.

Sometimes it really is you. Well in this case me, us, whatever. The important thing is he's not spraying. I can't believe it took us 9 months before realizing sometimes saying goodbye is kinder.

Wally

2008-04-16T19:28:00.000-07:00

In August of 2006 we said hello to Wally as he joined our family. Here he is as a little kitten.

Sadly, today, we said goodbye to Wally as he went back to the animal shelter where we got him so long ago. Very unfortunately he developed a spraying problem. We tried for a long time to solve it, about 9 months. Finally we accepted that ours is not the right home for him. He is the sweetest kitty and I hope he finds a more suitable home where he can overcome his affliction. I won't be surprised if he doesn't stop though. But they will call us if he comes back. They are not a no kill shelter. I was really impressed to see that of the over 5,000 cats they took inlast year they saved 97%. If he does come back they will call us and he will move to a friends farm and begin his life as an outdoor kitty. Because he loves people so much we wanted to save it as a last resort.

You can see how much they've both grown since then.
Anika scratches his ear. She's learning to be gentle...slowly....
Anika delights in Wally but her high pitched squeals make him nervous. There will not be young children in his new home for whomever adopts him. We'll miss you Wally.

Figure out the grey bits

2008-04-09T20:38:00.000-07:00

I've always been a rather black and white person who struggles with nuance. How can two or more things be true at the same time? But of it's possible and probable. Sometimes I think that Anika's gift to me is for me to conquer this delemma.

To be, at least, she's defies labels. She has ataxia but she's walking and talking. She's even making progress on the stairs. I can help her down our stairs without fearing will both go down. She's funny and determined. She loves to sing. She's so many things. When people who've never met her find out I have a daughter with CP they usually say, "I'm so sorry." There's a look of pity, really, I swear to god, pity, so much of the time. I hate that. I really, really do. Jason asked me what I would like them to say. I would like them to say tell me about your daughter. She's so much more than CP.

Even more confusing to me, I know they are envisioning a spastic child in a wheel chair. Spastic CP is by far the most common form. Yes, she has challenges and has to work a lot harder to master things than her peers but she's not what they are imagining.

Then I compare her to her peers and she's behind. They are racing around the playground. She's speed walking. There was an incident at the playground last week. It happened like this:

We were at the park today with our neighbors from down the street. Their little girl asked Anika to go on the merry go round with her. So Anika did. I hate the merry go round. I'm always terrified she'll get hurt. But it was just Anika and her friend so it was good. Anika started taking her turn pushing the merry go round right when 3 big girls jumped on it. She was working so hard to push it very slowly and very wobbly. And the big girls started whispering and giggling to each other, standing in the center going ridiculously slow as Anika struggled on. And I just stood there like an idiot. I totally froze. I didn't know what to do. The scene seemed to go on forever with Anika completely focused on pushing and oblivious to the big girls. Then her little friend said to them very forcefully, "Stop laughing at her she's my best friend." And she started helping Anika push it. I was so awed by that little girl standing up for Anika. Then Anika's friend's dad said, "You're doing a great job Anika. You're doing the best you can and that's what is really important."

To go on to another area she stumps me. Food. Eating. At her 4 year check up she was 31 pounds. Still down a pound and a half form her high last summer. So we started supplementing with pediasure and nutren jr. (thanks to 2 free cases we got from UCP). She gained 2.5 pounds in one month. We also gave up on trying to get her to only eat table food at dinner time. She'll eat a little bit but not enough. So back to the "gruel" stage 2 baby food with melted soy cheese and oil. But she eats it. I talked to her teacher today about her eating. Everyday when I pick her up she's the last one eating. I asked if that was always the case. Usually, it is. She eats yogurt and applesauce well. Apples, kiwis and banana she eats well too but other food like enchiladas she eats 1/3 a small serving while the rest of the kids eat 2 or 3 servings. It's just so confusing because she can eat it but just not very well or it's not worth the effort to her. Honestly, I don't know. But I'm thrilled that she's gaining weight. She looks so much better. If soft foods and pediasure are necessary, bring them on.

Then there's behavior. She's running amok so much. Her SIOT thinks it's mostly behavioral. I think a lot of it is too. But sometimes it's like she just goes somewhere else. Her teacher agreed too. She said in some ways she seems ADD but then she can really follow through on some tasks. Sometimes she just spaces out. It's my guess it's sensory overload. She just have a mild audiotory processing delay but under most circumstances you wouldn't notice. But in hectic, loud situations, transitions in particular she just zones out. I don't know what to do about it.

Overall she's doing fantastic. Even more so when you consider her slow start. But there are these areas of concern. My nuanced opposed brain struggles with how to perceive her. Typical child who's clumsy and falls who's on the tail end of normal or a child with a disability who is doing awesome. Can both be true?

Fortunately, Anika has a passion for life and enjoys people. These traits will carry her far. Whenever I'm struggling I look to toward her. Determined, pushing on, doing the best she can.

Dance Dance Revolution

2008-04-06T19:39:00.001-07:00

Over the weekend Anika got new batteries for her one of her old phonics type game. She quickly turned it to the music setting and started dancing and racing all over. I've never her seen her dance so hard or for so long. She actually danced herself short of breath. Most surprising she seemed to enjoy me taking pictures of her having a fun.

I asked her if she was tap dancing she said, "No, I'm SWING dancing."

"I'm sleep dancing." Twinkle Twinkle Little Star came on.

"Take more pictures Mommy!"

River dancing? She made her necklace at school. Very sweetly she made me one too.
Hula dancing?

Easter Et. Al.

2008-04-06T18:50:00.001-07:00

Where does the time go? It's just flying by. Here's the rest of the Easter Pictures.

Anika found a new favorite past-time...hugging Easter bunnies at the Zoo.

Easter Part 1

2008-03-24T17:43:00.001-07:00

I'm been having a carpal tunnel flare-up and had to keep my computer time down. I've got some great Easter pictures to put up. Here's part one taken at the Portland Parks and Rec Easter "Eggstravagnza".

Princess Chronicles

2008-03-11T19:38:00.000-07:00

Anika's very talented cousin Hannah, 8 years old, sent Anika a picture of a princess she drew for her birthday. Anika loved this princess very much. I had to laminate her because she wanted to play with her like a doll. The timing was excellent because Anika had a bug and had to stay home for several days. Here's some pictures I took so Hannah could the different ways Anika played with the princess. She named her Princess by the way.

Playing on the jungle gym.
Playing with beads.
Playing the piano. Thanks Aunt Ruth!
Riding in her stroller!
Sitting in the pot. She said, "I'm not cooking the princess she's just sitting. It's the right size to sit."

She spent much of the rest of the time being sick like this watching "Feel Better Little Bear."

A video review

2008-02-21T16:59:00.000-08:00

Happy Birthday Anika! Today is the actual day my darling little daughter turns 4 years old. I've put some video up from her early days so you can see how far she has come. There's a cute video of her from Christmas day playing in some rare snow.

I tried to get decent quality video up but it looks very pixelated so I'm guessing the eblogger compressed it. It was huge so maybe it was for the best.

I'm so proud of Anika. She is really turning into her own little person.

At 8 months she still can't still independently and struggles with head control. Actually she looks like she's struggling to control her entire body. This was our sweet departed kitty Leon. He was a wonderful therapy cat. Anika's first word was "itty" for "kitty".

One Year Old- She can roll over now and sit when placed in sitting for a few minutes.

Crawling at 19 months. She still commando crawled at this point.

Signing at 19 months.

Talking 22 months

Being her adorable self shortly before turning 4 years old.

Birthday Party

2008-02-16T20:17:00.001-08:00

We had a party for Anika early so we could celebrate with family next week. Truth be told throwing her a party made me so nervous that I did it early to get it over with. I was afraid no one would come. She really wanted a party and was very excited about it. She choose to have a kitty theme. It went very well. Three friends from school came and two friends from the neighborhood. Everyone was so well behaved. Anika had a blast. She was sad it was over but was very tired. I can't believe she's 4 in just over a week!

Coloring with Malaya and VincentVincent is sporting is kitty mask. At dinner Anika said she wished Vincent was staying over at her house. They play very well together.Pin the tail on Mr. O'MalleyThey did a great job!Watching the movie! They made about 1/2 through before going to play in Anika's room.
Sharing her seat with Malaya for birthday cake. That's little Marie on her cake. Anika chose chocolate cake and chocolate ice-cream and gold-fish crackers for snack food.
Here' s Mayala, Vincent and Ema from her school helping her open her gifts.
Here's where all the heads from those Mr. O'Malley tails went...on the gift boxes. There's Norissa, her friend who lives down the street.

It was a super fun party. I was really glad that both Nori Lee and Jen stayed. All the parents from Anika's school just dropped off there kids. It was fine but it was nice having some adults to talk with too. I personally can't imagine just dropping Anika off at a stranger's house. But maybe if she was my second child I'd be other that already.

Anika being Anika

2008-02-03T22:29:00.000-08:00

We had some snow Saturday.
Anika loves to play in the snow.
She saw her snow pictures and said, "Look, I'm so pretty." She's right.
Memembers night at OMSI-Anika finds some dinosaurs.
This is what she found. They actually looked much cooler.
Her favorit was the dino-dig. She takes a break to tell me, "Mommy I found a bone."

Other sorts of milestones

2008-01-31T20:16:00.000-08:00

Last week when I picked up Anika she said goodbye to her school friend. She looked him in the eye, with a big smile, patted his belly gently and said, "Goodbye Vincent". It was such a small thing, took all of 5 seconds but it was so beautiful. In the two years that she's been in school I've never seen her speak to another child. Parallel play yes. But direct play to speech no.

This morning, when I dropped her off she ran up to her friend Vincent and said your name is Anika. And she laughed and did a little wiggle dance and said I'm playing the name game. And you know what. He laughed and wiggled back with her. I love Vincent.

Today we went grocery shopping after school. She wanted to walk, not ride in the shopping cart but walk. And she walked next the cart and helped me pick groceries until she decided to push the cart. It was very slow going to I walked down the isle. I was debating over Bocca burgers or Garden Burgers when I heard a sad sad cry. Anika looks so sad when she really cries. Her asymetric smile really comes out giving her an anguised look. But regardless she was really sad. I quickly walked back and scooped her up. She was crying to hard to tell me what was wrong. I figured it was a 50-50 toss up between being frustrated the cart was stuck or she pinched a finger. But I got a shock. She finally told me that she was sad because she lost me! I felt so bad but a little happy too. It's such a typical response and good safety too. She's never ever ever been sad or distressed losing site of us. Unlike me whose had to page the store for lost little girl.

She's doing really well on the potty training front too. My little girl will be 4 soon. She's growing up.

Tired of Talking

2008-01-28T21:47:00.001-08:00

Me...that is. Not Anika. She loves talking, singing, reading, and being silly.

Anika 3

2008-01-23T15:47:00.000-08:00

Potty Training Success!

2008-01-08T18:54:00.000-08:00

Only one accident Monday at naptime when she fell asleep. No accidents today!

I'm so proud of my little Anika-pie!

Life goes on

2008-01-07T12:44:00.000-08:00

I can’t believe it’s been almost a month since I posted here.

First, the good…Anika had a great Christmas. This was the first year she could open all her presents by herself. Ripping the paper was really challenging the past years. She was excited about the event. She regularly asked if it was Christmas yet. Amazingly, it snowed on Christmas, a rare occurrence here in Portland. She had to run outside while still in her jammies to play in the snow. Of course she got her coat and boots on first.

The next weekend we visited the lodge where Jason and I got married five years ago. There was a TON of snow. Anika really enjoyed playing in the lodge with the other kids and having their parents read to her. She even got to get a ride on a sled outside with the other kids. She ready to come inside for some hot chocolate pretty quickly.

The bad is that she’s had several days of “wobbliness”. Not concurrent days that we typically see in an episode but rather one day here then later 2 days there. Her appetite is down and she’s been just not quite herself.

This one really makes me feel sick to stomach. At her 6 month follow-up with the dentist. He confirmed her teeth are still loose and painful to the touch. And she has bone loss around her two top teeth…presumably from the trauma of the repeated falls. She will likely loose them soon. Her sore teeth make her struggle with solid foods even worse. Ugh. I’m finally learning how to puree our food into a smooth runny gruel for her. Her weight is down so we need to boost calories. It’s not terrible back to the 10% but she was up to 20-25% for a while and looked so good too.

Jason said so accurately, we are really no closer to answer than we were a year ago, yet she continues to grow up. It’s very frustrating. I guess it’s time to move ahead with the testing we’ve put on hold.

There is another bright spot. She is one week into day potty training again. It’s been going well. Today was her first day at school in panties so we’ll how that goes. It really seems to affect her self-esteem though…she’s started undressing herself more again. She worked for 5 minutes one night getting her shirt off. I am so proud of her.

She continues to be sweet and funny. For example, after putting on Elmo panties one day she said, “There a little Elmos all on my panties. I have little Elmos all over my bottom!”

She’s started asking a new question. “Are you talking to me or daddy? Are you talking to me or yourself?” She uses it appropriately. She still doesn’t ask any why questions though.

We are looking into ways to support her during her more wobbly times so she won’t continue to get hurt.

So life goes on.

Some pictures

2007-12-11T21:36:00.000-08:00

Anika has a bit of a bug...a tummy bug. I was never so happy to hear that nine kids were out sick today. Saturday and Sunday Anika ate lightly. Sunday night she threw up and Monday she stayed home. Monday she fell on her face and loosened her front teeth up again. She fell four times in a hour. This was not the tearing around the house, slip and fall on your hands and knees kind of fall. This was walk slowly to the potty and land flat on the floor with head crack kind of fall. We are so afraid of the dreaded "e" word. Today she went back to school. Didn't eat much. But we found out "something" is going around. Indeed the poor kiddo had some diarrhea this afternoon. But again, I was so happy. Being sick, sucky as that is, is worlds better than episode. Fortunately, she is still talking well and saying goodnight without prompting (a very recent) gain.

On happier notes we saw our dear friend Lyn. It's been 3.5 years since she saw Anika. And much too long since I saw her. It was a wonderful, heart-lifting visit for me.

We got our tree up. Anika loves it. She so wants to play with everything. She's trying really hard not too. She likes to stick her face right up to it and say, "Oh, what a beautiful tree. What a beautiful teddy bear. What beautiful lights." It's really so freaking adorable. She also is enjoying her advent calendar. She impresses me by remembering what day it is that she will ultimately eat.

We sold her crib and dresser/changing table. I loved those items. They were wonderful gifts from her grandparents of beautiful quality furniture. It broke my heart parting with it. But we were able to buy her a new big girl bed that she picked out from IKEA and night stand, dresser, and quilt set.

I had been talking it up for a while saying how we could lie in bed together and read her bedtime stories. For the past month or so she just didn't want them, but we had to sit on the floor while she lay in her toddler bed. It was so cute. Her first night with the bed she choose a book called The Cuddlers, about a family that cuddles in bed after the kids creep in during the night. A very apt choice I thought.

This is why were aren't sending out pictures this year. Anika does not want her picture taken much of the time. She begrudgingly put her christmas dress on but a smile was out of the question. It's all about the attitude.

This is taken at OMSI while watching the gravitram. It's a little roller coaster for silver beads. Anika will watch it for 30 minutes sometimes. It really is pretty cool.

Anika is doing great!

2007-12-05T22:20:00.000-08:00

I can't believe it's been so long since I updated. November was a fabulous month for Anika and she continues to be doing well. What do I mean by doing well? She's been more focused and conversational. She's really having some conversations with us. Tonight driving back from her SIOT therapy she asked me, "Mommy, do you want to play night time I-spy?" And we did. She asks about our feelings a lot. She's really trying to understand emotions and our reactions to things.

Physically she's been pretty stable. She still falls a lot but she's running and really moving around more. At PT is walked 4 consecutive steps on the balance beam with NO assistance! I was shocked, but in a good way.

Adaptively she's been feeding herself a lot. She's not smearing food on the table with every meal. She's drinking out of open cups. She's using the potty inconsistently but some.

At school she's talking her the other kids more and interacting with more.

She's started watching movies with us. Kids movies like Curious George, Lady and the Tramp, Aristocats. Her ability to sit and focus has really improved though she only sits for 30 minutes. She asks lots of questions during the movies.

It's nearing the time when she is due for her next "episode". They follow the bright periods after she's regained her lost skills and actually moves forward. However this time we are hoping that her new medication will stave it off. She's been on nearly two months now. I guess will find out if it's doing something soon.

So we are looking forward to Christmas and enjoying the good times.

Happy Halloween

2007-10-31T20:42:00.000-07:00

Anika totally "got" trick-or-treating this year. It was really cute. She could hardly wait for her daddy to get home so we could all go together. She even said, "I hope Daddy comes home soon!." She was an adorable lion again this year. She went up to the doors and knocked. She often said "trick or treat" and "thank you" for the candy. We were very impressed.

A little of this and that

2007-10-30T20:10:00.000-07:00

It's fall now...the leaves are coming fast and hard.She says good-bye to her bassinet in the final picture. She's growing up and changing...like the season's there is no stopping that. I'm proud of all her growth but she'll still always be my baby.

Anika Loves to Sing

2007-10-11T23:30:00.000-07:00

I'm going to visit my sister is Florida and will dearly miss my sweet Anika. I took some pictures of her today and asked her to say "I love you" instead of cheese. She rarely tells us she loves us so I figure get it where I can. I then thanked her for complying and told her she was cute. She then made this impromptu song. She loves to sing and does this all the time.

But this song I had to get on tape.

It's hard leaving her now because she's having an episode. It seems pretty mild so far.

October 23rd, when we meet with her new neurologist can't come soon enough.

She's doing great in her new preschool. I LOVE her new teacher. She's a former PT. She called us to let us know that Anika was wobbly. We hadn't said anything to her about Anika being in an episode since we weren't sure...suspecting but not sure...weird as it sounds it was nice to get outside confirmation that we aren't imagining things. Her episodes aren't always dramatic...gradual declines and withdrawal. You'll notice in this tape she's not making eye contact or really engaging directly. She gets that way a lot during her episodes. But back to her teacher, she's is great...she's been calling the cook and dietitian to make sure Anika gets appropriate veggie lunches. She's sits next to Anika at snack and lunch time to give Anika a little extra help. She made these little potty slips that Anika can give us when she uses the potty. So far we've got two. But it's so nice to get good communication and know she's being looked after well.

Speaking of being in good hands...her grandparents and Jason will take good care of her while I'm gone...but I will miss her! But now I can come here and play this song.

A Period of Wellness

2007-09-24T14:21:00.001-07:00

I'm always afraid to post about periods of wellness and development for fear of jinxing. That's silly though, right?

Anika has been doing very well. She's regained was she lost from her previous episode...questions, gross motor, eating. She actually ate a bean burrito including the tortilla. She hasn't managed soft doughy tortilla before so that was awesome. She's been eating lots and self feeding. She still gets distracted and makes a big mess but hopefully that will come in time. I hope these recent eating gains stick. This area has been such a slow improvement because her episodes set her back. But right now it's pretty good. She's getting better than I've ever seen her.

She asked me a very practical question, "Mommy, did you get cereal bars and granola bars?" I told her I would that morning and she remembered and asked me. Sadly I didn't have them. Although her language as improved tremendously this year she's still on the waiting list for speech therapy. She doesn't ask questions on a regular basis and is still fairly stilted with her language but it's improving all the time.

We are going to start doing some Sensory Integration Occupation Therapy. Her system is very out of whack. When she's not crashing into you or the couch with full body impact she's covering her ears about sounds being too loud. We went to a pirate festival this weekend. It was a lot of fun and she did awesome in the inflatable play areas. The attendants and other kids helped her when she needed it. But part of the festival had loud cannons in a mock battle. All of the kids in the vicinity where scared and covered their ears. However, as far as I could see, only Anika kept her hands on her ears for a full 30 minutes afterwards.

She started preschool today! What a big girl. I'll go pick her up soon and can't wait to hear how she did. Jason and I are both impressed how much effort has been taken to be sure she's safe and included. The inclusion specialist was there to meet her today when she was dropped off. Her lack of potty training isn't an issue...she's really regressed in this area. She told Jason, "I'm not using the potty every again." Good plan Ani!

We got her blood sent off to two labs to be included in some research tests since our stinking insurance keeps denying her gene tests. It might be years until we get the results. We can rule out vitamin E deficiency ataxia.

Next week she gets her 6 month eye follow-up. And she'll finally she her new neuro in October too. We hope start a medication trail then.

Here's some fun pictures of sweet miss Anika.

Ocean

2007-09-12T21:38:00.000-07:00

I remember loving the ocean as a little girl. I had a little friend named Ocean too. She looked like the ocean to me...beautiful and ethereal.

This past labor I decided to share that with Anika. I wondered why we hadn't gone yet this year. The 2 hour car trip reminded me. We hadn't gone too far before Anika said, "My pee-pee got on the car seat." After a pit stop potty break and outfit change she was munching on a cheese stick. A minute later I hear, "I swallowed the throw up in my mouth." These statements were made with happy sweetness that only a young child could have.

One of the more frustrating aspects of Anika's episodic condition is her abilities really fluctuate. And though she was eating string cheese just fine at the being of the summer, she struggles with it now. It's hard to gauge where she's at. Fortunately there was no throw-up and she was able to spit a huge wad of string cheese out into my hand. One of the joys of being a mom I guess.

She was quite a trooper though. She enjoyed playing, "Buzz, you're a statue now...you can't move." "oh no I'm a statue! Turn me back please" "Buzz your a mommy." Then of course we would be replay with her being the statue. After the 20th time or so I was ready for the ocean.

Anika loved it! It was a tiring but fun day. Here area few pictures.

zoo pictures

2007-08-25T20:50:00.000-07:00

Anika is over her last episode...two full weeks.

Here are some pictures of her having fun at the zoo. It was so nice to see her doing well and having a ball.

We Live

2007-08-10T19:29:00.000-07:00

That's about all I got. It's not been a good-time. Another episode. Almost 2 months to the day. On day ten she seemed better. We started the topomax. We think it's making her not good. Sounded like she had a drop attack at daycare. So were are stopping it. Will try it again when we know she's at baseline.

168 Hour Bug

2007-07-09T21:45:00.000-07:00

Poor Ani got a bad and I do mean baaaaad tummy bug. Yes when you are a parent of a 3 year old, tummy replaces stomach, poop replaces crap so on and so forth. Ani's Aunt Michelle came to visit on the 4th mid-way through the bug. Being single and living in the city we had to give her a crash course on child proofing her vocab. We thought Anika was on the mend but threw up again that night. She was really excited to she her Aunt Michelle though.

It started Saturday and by Monday she was in the ER getting IV hydration. We had her on zofran to stop the vomiting but her poor tummy just shut down. She could drink but hours later it would all come up.

Thursday I took her to hippotherapy and she nearly had a heat stroke. Or maybe she did...she couldn't sweat so we had to wet her down and blast the air-conditioner on the way home. She was just limp. Living on pedialyte, toast and
crackers.

Saturday we thought she was on the mend. Grandma, Grandpa, David and Gwen came over. But this time my stomach wasn't feeling so hot so I went to lay down. I woke up to haring my sister saying, Anika just threw up. Back to pedialyte and zofran.

But she seems to really be on the mend now. They said she ate well at daycare and kept it all down. She was very cranky this evening. I think she's just wiped out.

Here's some photos from the week.

Anika Sweet Smile

2007-06-25T21:28:00.000-07:00

I got a request today to submit a photo to website that's under development. Looking through the files I found this one. I took it last month. Shortly after taking this photo she would have another bad fall and chip the corner of her tooth even more. I remember what I was thinking when I took this photo. -How are her teeth doing? Is that one slightly gray? Is the chip any bigger?- I was so consumed by worry and fear that I missed the pure joy on her face as she tickles the camera lens with a leave on a warm late spring afternoon.

I Don't Know, I Don't Know

2007-06-24T16:54:00.000-07:00

Her daddy was out photographing a wedding. He told her this before he left in the morning. Later I asked her if she remembered where daddy was. After a I long time she said I don't know, I don't know. This is the first time I've ever heard to say that. She unusually just makes sometime up if she doesn't know. I praise her for saying she doesn't know and say it's good to tell us if you don't know. She's on to other things though.
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The first day of summer meant the parks turned on their wading pools. This was an exciting event for the local kids. Anika was thrilled right along with them. She confused me to let her each us after going to the park. She was so eager to play in the pool with the other kids. It was quite cute. Here's a couple of pictures from that. This is the first year she's been steady and ambulatory enough to go in the pool by herself. She loved it.
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Me and Anika...Anika and I have been struggling. When I'm away from her I think about her and miss her sharply. When we are together again, it feels like seeing old friend who you adore but haven't seen for a while and somehow things just aren't as fun and easy as you remembered.

Anika is experimenting with defiance. Now this a challenge under any circumstances but she's elected to draw her biggest battle in the bathroom. It's difficult to coax her to the potty, even more difficult to coax her into pulling down her pants and underwear but where it gets nuts for me is when she won't get off after going and decide to attempt a somersault from the potty. She leans over, hinny in the air, potty chair wobbling dangerously. I pull back up and get her off the potty. Somehow get her wiped and dressed again although she's not helping at all and loves to go limp the moment you touch her. So limp she'll crumple onto the floor should let go. Now the challenge is getting this limp child up the step stool to wash her hands. She leans over the sink standing on her toes with most of her weight on the sink. Her feet shift dangerously. She can easily fall off like this. She has fallen in the past and was very upset but now she's not fazed. I instruct her to focus. My voice gets high pitched and the exasperation scrapes out of it. I feel guilty. She's now splashing her hands in the sink...immune to my pleas to just wash her hands nicely. Finally, out of sheer desperation...it's been a long day and this is the 5th or 6th time we've played out this scenario. Normally I hand over hand force her to wash her hands describing each step. But now I say, if you wash her hands nicely and behave you can have pumpkin pie. Suddenly she's erect, purposely rubbing her hands, all business...for about 5 seconds. The her hand bumps the faucet and a little spray goes up...next thing I know she's got both hands covering the faucet forcing water to shoot everywhere. I've had it and I tell her so.

me: That's it, no pumpkin pie. Straight to bath time.

I march upstairs with a sobbing child in my arms.

Anika: I'll be good. I be nice.

me: It's too late.

Anika cries more despondently. We sit on the couch. I'm thinking we can discuss actions and consequences. She looks up at me with her tear streaked face her expression a question mark although her words are the usual statements she speaks in.

Anika: I won't cry. I'll be good. I'll focus. I'll focus and eat the pumpkin pie.

Knowing I shouldn't fold...I should be consistent and all that...still I can't say no to somebody you wants pumpkin pie badly enough to focus to get it.

me: Ok sweetie...you promise to be good?

Anika: I promise.

I can't help to think I don't know either. Trying to teach her to be civilized but let her spirit be free. Trying to push her past her limitations while I don't know exactly where they are. I guess it's ok not to know.

Anika's Big Day

2007-06-04T21:18:00.000-07:00

Besides all the fun, this was Anika's first day without diapers! She's got potty power! She's doing great.

First Sprinkler

2007-06-02T23:53:00.000-07:00

Today was the first time that Anika ran through sprinklers on a hot day. She loved it. It was so much fun seeing her finally getting to enjoy this quintessential childhood past time.

I never dreamed it would take her so long to achieve some of these milestones. But I also never realized how little it would matter how long it took her to get there, only that she did, and that she loved it when she did.

A Tale of Sickness

2007-05-20T22:09:00.000-07:00

Here's our abbreviated photo-story:

1. Saturday afternoon: At St. Johns Parade and Bizarre having fun, We never saw it coming

2. Sunday, 6 am: (No picture) : vomiting commences with continual crying, visit Dr. clinic get Zofran

3. Sunday afternoon: After 2nd dose of Zofran stops vomiting, she watches Little Bear, Thought we were out of the woods

3. Monday am: She's got the Pinkeye!, 5 pm go back to doctor, she's got a fever and an ear infection now.

Of course Jason and I both get the pink eye too, though not in that order. We both get throat infection and asthma flare-ups. And I also get a sinus infection. So much sickness! Tuesday I start antibiotics. Saturday I switch antibiotics and Jason starts them too. Sunday I finally feel better.

4. Sunday afternoon: Hoping we are all on the mend, Daddy reads to Anika until I impose picture taking on them.

Yet More Sickness

2007-05-15T09:43:00.000-07:00

So this time it's an ear-infection in her other ear, croup, pink-eye and a plain on cold. Oh she already made it through the day of vomiting. I've got the cold and I fear strep. I'm going to the doctor this afternoon. I admit...I feel a little cursed here. I feel a little blighted. But I do realize we are lucky that Anika handles her sicknesses as well as she does. Yes, whenever she gets sick a spell of vomiting is usually involved but we can usually stop it with Zofran and she drinks a lot so we can keep her out of the hospital. I'm grateful that she's generally healthy too. So blighted but thankful it's minor in the scheme of things. Sure sucks now though.

Fortunately her illness hasn't caused her verbal skills to regress. She's actually getting a lot more conversational which is just fabulous. She even told me a story, "There was a little girl, who sat on the big potty and went poopoo and peepee. Her Mommy was so proud of her." She is continuing to show interest in the potty. Still a long way to go but she has some success and even asks to sit sometimes.

Oh...she's started calling us Mom and Dad a lot of the time instead of Mommy and Daddy. My little girl is growing up.

Hopefully we'll be on the mend soon.

Walk 'N' Roll for United Cerebral Palsy

2007-05-12T16:41:00.000-07:00

We've started Team Anika for the third Annual Walk 'N' Roll. I even made a cute graphic to link to her site. I have mixed feelings doing the walk again. But I showed Anika the brochure which shows lots and lots of people walking n rolling and some a cute little girl with her face painted, and I asked her if she remembered doing it last year. She didn't answer that question but when I asked if she'd like to do it this year she quickly said yes. I asked if she'd like to be the Captain of Team Anika and I got a big smile with that answer as she said yes again. So we've started Team Anika.

My feeling are mixed because she's not what I imagine when I think of CP. She can walk fairly well and communicate just fine. She's not rolling. But then again she doesn't have a natural gait which causes lots of falling. She tires more easily and her ataxia becomes more pronounced. She has a delay in her auditory system. Basically she has to work really really hard to accomplish what comes naturally to most kids. As she gets older she'll become aware of this. I wonder how she'll feel about it. Basically, she has CP. It comes in many different forms.

Why I want to get out there is to raise awareness of disabilities. With her 50% motor delay I don't expect her to be potty trained anytime soon, although she is working on it. So there are many preschools she can't attend. To me it's discrimination. I know lots of typical kids are potty trained at this age but she's got a physical reason why she's not. It's discrimination to me.

Also, I am happy to support our local UCP chapter. They are wonderful resource for information and support.

And finally, I want Anika to be proud of who she is. Participating in Walk 'n' Roll which is really a big party celebrating individuals with disabilities is a positive thing.

These words are an awkward attempt to express myself, but here they are none-the-less.

Here's a quick Anika update. She's been doing really well. She's been very happy and agreeable. She continues to love to get out and experience life. She loves loves loves being silly. She mixes up words from songs on purpose to be silly...such as Old MacDonald had three blind mice.

Here's a couple of recent pictures of her being Anika.

Wearing a birthday gift from Maya and Leo
Having fun at dance class
Having fun at dance class
At her preschool friends swim party
Getting in the pool
Having fun with Daddy

Sedated BAER

2007-05-02T19:33:00.000-07:00

Really it was a miserable experience.

Our audiologist was the silver-lining in the experience. She was so sweet and helpful. She went over the results right away. The good news is that her hearing is good and her nerve function is good. That's working properly which is really awesome although it does shoot down some theories we were working on. The bad news is she still has a slight abnormality that doesn't really explain or clarify anything. Sound familiar?

She has a slight delay in her ears' response time to sounds. This could help explain her slight delay in responding to questions and in social situations. They still don't know if the vestibular system is working properly. But the response-time delay does point to brain abnormality...there might be other delays in her system which are part of her issues.

But the really bad part was her HORRIBLE reaction to the anesthesia again. She SCREAMED ALL the way home. Ear splitting, eyes squinted, face beat red and wet with tears kind of screaming. In fact she screamed like she was dying for nearly three hours straight. I called the hospital back in tears because it was so awful. On the way home it started raining so I turned the wipers on. She stopped screaming long enough to see that and then yelled TURN WIPERS OFF. And she turned her face away and covered her eyes. It was like looking at them made her agony multiplied. Man, it was like her sensory system went into overdrive. Music was intolerable. Anything she looked at was highly offensive. And she lost head control and body control and was just thrashing around banging her head over and over trying to crawl and sit up. She couldn't be comforted. Jason finally had to hold her in a bear hug for 45 minutes straight while she screamed. The anesthesia person said, it's normal for them to be grumpy, like they have a hangover. But this was hysterical inconsolable misery. They said only thing we could do was take her back to the hospital and have them put her to sleep again. Then of course she'd have to wake up again.

She finally accepted ice-chips and watched Little Bear. (To the creators of Little Bear I can not thank you enough. This show gives her such solace.) From then on it was better. She drank and ate a ton. But 6 hours later her speech was still slurred, she couldn't walk by herself and she wouldn't accept that. She'd get up and fall and fall and cry and try again. We kept telling her let us help you walk. But no no she wanted to do it herself.

I finally got her to bed. She's beat.

I pray she's better tomorrow.

It's in her chart to never use this type of anesthesia again. It was the same thing she had for her PDA which did the same thing only that lasted for 6 or 7 hours of screaming. But she was in the hospital time so they gave her morphine.

I tell you. I'm done. No more tests. It seems so unlikely that we'll be able to figure out whats going on and have it be something we can do something about. This was just torture for her. No more.

Jason is asleep on the couch...we are all wasted.

Diaper Discrimination

2007-05-01T17:08:00.000-07:00

I still struggle with the concept of Anika having a disability. After all, she can walk and she can talk. She can laugh, eat lots of table food, color, play at the park and do so very many typical things. Yet she is ataxic...her balance is poor, she has a little overshoot in her arms. It's mild but you can see it there and it really comes out when she tries to use a mouse. Her gross motor skills are 50% delayed and her language is a odd. Her social skills are also delayed.

Just today she got an OT eval. She's really holding on there. But her OT said she likely has to work twice as hard to do typical things. And she is falling behind. She'll be doing a run of intensive therapy this summer to help catch her up. It's something that she'll have to work on her whole life.

So she's able but she's also disabled. Because she is pretty high functioning and young too we haven't experienced a whole lot of discrimination at this point. So far the only real roadblock she has hit is diapers. A little thing like diapers prevents her from attending several preschools we've called about. At three she is expected to pee and poop on the potty. What if is has CP and can't control her body so well yet? Well we could put her in with the infants. Gee thanks. Seriously, what's the point?

I found out that preschools are covered in the ADA (Americans with Disability Act) and they are supposed to make reasonable accommodations. So if there are infants at the facility then it's reasonable to expect them to walk to the next room and use the diaper changing area. I haven't fought this yet. I have mixed feelings about trying to get her in a place where they don't want her. One place we looked at seemed very optimistic about her attending until they saw her. They commented on how small she was and said they didn't think she was ready. They didn't play with her first. They judged her by looking at her wobble here and there punctuated with a few falls. When I asked about making accommodations for her not being potty trained they said perhaps if we provided a one on one aid just to change her freaking diapers. It really pisses me off. I can't stand that people judge her of harshly not on her abilities but what she can't do and what they assume she can't do. Really, she gets around pretty well.

I do worry about the future. How will she do in school? Will she get services she needs. It's going to be a lot more work for her even though she'll be walking and talking. Oregon does not have a robust program for special needs. So we've got to learn about 504 plans and IFSPs and fight for her rights.

It's amazing how little people without disabilities think about being disabled. I know I didn't. I sincerely hope we can raise awareness. Different but not scary. Different not worse. Different. I love the Disability is Natural philosophy by Cathy Snow. 1 in 5 apples is green. It's different. It's still an apple. It has more in common with the red apples than is different. Different and the same.

Here nor There

2007-04-26T20:02:00.000-07:00

Anika has had more potty success with the poop. It's still be noticing she's going to go and coercing her to the potty. But then she goes and is proud. I'm really ecstatic about it. I haven't changed a poopy diaper in a week! Woo hoo!

I think her balance is improving again, though she fell on her head getting out of her high chair today. I was right there to help her but spaced out for a second. She did really well at hippotherapy today. She told me right before we got out of the car, "I won't pee on ladybug's back. I pee in my carseat." Thank god for diapers.

Blogging Against Disablism Day I came across this on another blog and thought I'd participate. Check it out.

Anika will continue to be seen by the Casey Eye Institute for quite a while. The good part is her eyes are healthy and she sees well as expected for her age. Both eyes are both at 20/40 now which is good. But because she has the rotated eyeball. (yes, my baby has a crooked eye) and her vision isn't 20/20 they'll be following her until she's 6 or 7 unless something changes. We go back in 6 months. I'm actually glad though because it's weird that she has that crooked eye. The doctor had more time today so we chatted for a while about Anika.

Usually, when an eye is rotated it's because the muscles aren't working together properly. But that doesn't appear to be the case. Usually when an eye is rotated like her's is they child will tilt there head to compensate. Are you thinking, wait, didn't she tilt her head. Why yes she did! But that was Benign Paroxysmal Torticollis and this would be Occular Torticollis. With occular torticollis if you cover one eye the head should straighten. Anika's does not. I asked if it was possible that because of her BPT and her ataxia her world was just so unstable that she never figured out how to compensate by head tilting. The doctor said yes, that's very possible. She also said that it's likely that Anika's brain has adapted to the crooked vision and sees it as straight now. Perhaps you are thinking what I was thinking, "Isn't is odd that a child would have two different causes for torticollis? What are the odds?" And the doctor agreed with me too. That's why she wants to keep an eye on Anika...pun intended. She's also going to research her condition and consult with a neurological ophthalmologist. She's baffled and intrigued by our little mystery of Anika.

On another note of odd...she's got both chronic and episodic ataxia? What gives? Really?

That's about it.

Something About Anika

2007-04-21T21:45:00.000-07:00

There was something about seeing Anika playing in her room today that struck me. She looked so big, so grown up. I know she's three and that's ridiculous. But there was just something about her.

I'm always amazed at how beautiful she is. I'm also struck at how different she looks at different times. There's just something about Anika. Something that makes me uneasy...not her...but her symptoms, her presentation, her variability. She's been falling a lot which just totally sucks. I hate, hate, hate it.

Her tongue just finally healed from her nasty stair fall. And tonight she trips on her pj's on her over to me to roll them up. She fell into a bin and scraped her cheek on the outside and bit her cheek on the inside. It looks really painful. I don't know if you can see it in this picture but there is swelling and brusing already. She's watching Little Bear and eating ice-chips here. I just breaks my heart for her. She's getting so banged up and I can't protect her from herself. If it were me I think I'd give up and say I'm not walking...it hurts too much. She's much stronger than I am though. And because of her I've become so much stronger than I ever was. And I've opened up more than I ever knew possible. I love her so much. She's my world...she's my heart...and it breaks to see her getting her every day.

But on a positive note we had another potty success. Yay! More poop in the potty. She's so proud of herself. I can't contain my excitement...still me bringing her to the potty why she denies needing to go. Except today after I reminder her she had her new dora potty seat and could bring her book (yes it's a dictionary) she said ok. I go poop on the potty. She even got on it by herself. About the dictionary, she likes to "read" the dictionary or the phonebook. Today she read about going to the park with Willow. Willow was nice to her mommy today. Will sat on the big potty and pooped. Her mom was very proud.

Jason's been out of town. I've had alone time in the evening to think and blog. Tomorrow we pick him up from the airport.

Potty Success! and other accomplishments

2007-04-20T21:02:00.000-07:00

I bought Anika a little Dora potty seat that goes on the toilet. The last two nights she pooped...get this...in the potty! YAY!

Each night I noticed her doing what I call her, "poop-hand-dance", she denied it. "Just a little gas Mommy." She needed a little nudging, read, me putting her on the potty, but in the past she would hold it and poop in her diaper after she got off the potty.

And she was sooo proud. We were reading Baby Buluga while we was on the potty. I changed it to make it all about pooping. Anyway, after she went she picked up the book and started "reading" it outloud. She said, "Baby Buluga's Mommy was so impressed because he pooped on the potty." I'm not kidding that's what she said.

Isn't it crazy that a kid who can come up with a sentence like that needs speech therapy? What she has is a pragmatics disorder. Her SLP describes it as a learning disorder. It's the area of conversation and social interaction. She says it most likely will not resolve but Anika will learn to compensate. But you never know, Anika keeps surprizing us. I find it so weird that we have to teach her how to ask questions. She's starting to learn though. With some coaching she will change. I want some milk to Can I have some milk? At three she's finally starting to ask "What's that?" It's funny because she often answers the question to. She's working it out...asking questions I mean.

Anika can now get in and out of the carseat with minimal assistance. She washes her hands with minimal assistance now too. She can do it by herself but we need to spot her coming down from her step stool.

And she's doing just awesome in swim class. She follows the directions well. She shows caution. There are two teachers and 4 students so one teacher spots her when the kids are moving around in the pool.

One of her favorite activities right now is pretending she's Mommy and I'm Anika. It's pretty cute.

So there are lots of good things happening for with Anika now.

Sometimes you just gotta roll with it...

2007-04-18T22:54:00.000-07:00

April and May are going to be busy months for Anika.

Ears
We had her follow-up annual ear/hearing exam yesterday. The last test was inconclusive. I was really hoping to cross this off of her "being followed for possible problem" list. But it wasn't in the cards. So she's going to be scheduled for a sedated BAER test so we can finally get a definite answer about this. The sedation will be light so it should be a minor event.

Eyes
Next week we go for her follow-up eye exam. Same as with the ears, there were just a couple of slight differences which could be normal or could indicate a problem. I think if there is no change we'll be released from the eye-clinic.

However, it's been recommended that we check in to visual-perception therapy for Anika. I think, this type of therapy would teach her to use her eyes more effectively. I'm going to discuss this at her eye exam.

Meta/Neuro
In May she is due back at the Neuro-Metabolic clinic. I expect we'll check and say, "Overall she's doing well. Still has episodes of more intense and unexplained ataxia accompanied by decreased appetite and occasional vomiting." Also, hopefully I'll be able to get some video of her limping and being more ataxic because you know she'll be just peachy the day she sees them. Her last metabolic labs were not indicative of a metabolic/mito problem so I expect we will be released from this "clinic" and go back to just being followed by Neurology exclusively on a yearly or as needed basis.

Heart
I haven't scheduled it yet, but she's due for her 6 month cardio follow-up. I believe they'll do another echo and if all is well release her from the clinic. That's what we want, release.

Concerns
We've all been observing more of an intermittent limp on her left leg. With her ataxia and unstable gait it's so hard to tell what's what.Her Grandparents commented on it, I noticed it in a video I took a few months back and a friend commented on it too. Three PT's have observed it come and go too. And then there's the issue of possible urinary incontinence. Is it just delayed development as is typical with her in so many areas or is there a physical reason for it? So her PT is discussing her Developmental Ped. the possiblity of a spinal MRI. I'm trying to tape as much as I can of her "limping" in the meanwhile.

Rolling with it
If your tired, puzzled and bored...think how Anika and I feel. Well actually, Anika handles her appointments with outstanding cheer and cooperation. The only things she hates are blood-draws and blood-pressure checks which we think reminds her of the tourniquet for a blood-draw.

I'm looking forward to getting to the point when we understand her issues and know when to be worried. Right now I feel like we are still trying to establish a baseline because we don't really KNOW what is causing her issues. We ASSUME it's brain-based because of the symptoms but her MRI revealed nothing. So, while I hate putting her through more tests, I do want to rule out physical reasons for her problems.

And just for fun
OK and now for something completely different. Here's a few Anika pictures from Easter. You can see she really had fun finding the eggs. It was very cute to see.

Family News

2007-04-17T21:49:00.000-07:00

Good news! Hannah is home again. I haven't talked to Shana yet to know the details yet but she's on the mend. I imagine all those broad scale antibiotics did the trick.

Now that Hannah is recovering comfortably at home. I wanted to give Hannah's older sister Kayla a shout-out. She's going to be trying out for the cheer leading time at leUniversity of Florida soon. Here are a couple of pictures of her at the cheer clinic.

Pretty amazing what she can do. I know I'm biased but she looks like a shoe-in to me.

Hannah

2007-04-17T06:28:00.000-07:00

Please keep Anika's cousin Hannah in your thoughts. If you are inclined to prayer...please do so. She's very sick and in the hospital. They aren't sure about what's going on with her. Here's a picture of her with her daddy. You can see how pretty and sweet she is. Thanks.

Easter

2007-04-08T20:10:00.000-07:00

I know these aren't very Eastery pictures but we did in fact celebrate Easter. I think I can get some good pictures from Jason. I keep meaning to write a real update but I just don't seem to get the time. Right now Jason is finishing Anika's bath and it's time for me to get our dinner finished. Maybe tomorrow. In the meantime...here's some fun pictures.

I asked Anika to pose for me in the last two pictures. Here she is vamping at the camera like a little rock star.

the devil wears gymboree

2007-03-29T18:21:00.000-07:00

What the heck! We are having some of the worst tantrums. I don't know why or what to do to diffuse it. Let's just say we are having a lot of timeouts.

I've got some pictures to put up of Anika at hippotherapy today. I'm amazed at what she can do. Of course she was a bit contrary today which goes with her general oppositional mood these days. She thought it was hilarious to NOT catch the ball and have it bounce of her helmet. She pictures below. But she did do a good job in general. You can see her standing and riding. I couldn't do that! And there's a picture of her playing a game where see grabs the colored lei's out of the trees and clips them to ladybugs mane and tail. Ladybug is a saint amongst ponies. When Anika said good-bye, she gently lowered her head and sniffed at Anika as if saying goodbye.