Monday, April 28, 2008

Alex turned 4 and Kath took steps!

We had a great weekend!
On Sunday we had Alexandra's 4th birthday. She woke up at 5:30AM and wanted to finish icing her cake. I said--"Ok, give me a few more minutes" and then when I realized the actual time I said, "What are you nuts?! Go back to sleep!" She was so excited she flitted around the house and giggled about "her" day! She was surrounded by loving family and friends both present and those who wanted to but couldn't make it. Chris was able to come home with his girlfriend Abbi and they helped Alex fill the pinata. But Nick wasn't due to distance and finals; she missed him.

We had great food thanks to lots of help (LG,JK,KR,JP,LM). Alexandra made her own birthday cake and decorated it herself (and dealt with me saying "WHAT did you DO?" until I said, "Ok, it's YOUR birthday cake!" :-)). She saw the bakery people make flowers at Hannaford so she made her own lovely flowers and THEN she piled . . .I mean sprinkled . . .sprinkles in two areas of the cake. :) She loved all of her cards--those mailed and given in person (she truly loves cards--she rereads them and plays with them and we save them all as I did when the boys were little) and she loved her gifts ("Just what I always wanted!"). The pinata was a highlight. We made ALL the kids play--up to Abbi who is the oldest--ahem, I won't tell you how old, but she had to be spun around many, many, many times -one for each year, ok so she pleaded sinus issues and we only did half--but it would have been a lot!) :-)

That morning Kath decided to take 5 steps on the kitchen floor. That night as I told her to take the balloon out of her mouth I realized she was WALKING 4 steps while I was saying it. She took a few little jaunts when Sue (PT) was here today--so now we have more witnesses! When I hold her hand to 'walk' her she is more solid on her feet. She is very proud of herself. She is jabbering more too, so it is a lot of fun. She has also located her bellybutton which is entertaining since it disappears on her when she bends down to look at it. :-) (The last few nights she has woken up crying out-but after a few minutes she settles back down herself--maybe cramping from all the walking.)

Lucy turns 16 Wed and Bucca turns 2. (They are our pups.)

Have to get back to school work. Hope everyone is well. Roger finishes his St Rose class Sat.

Oh -here is a list of Kath's appointments for the month:
Mondays and Weds Kath has PT, (physical therapy), except for the 12th, 14th and 26th
Tuesdays and Thursdays she has speech therapy
May 6th--OT evaluation
May 15th, videoesophagram at Albany Med to see if she is aspirating her food
May 20th, Pediatric Eye Doctor, to see how much her field of vision has been cut and if there are any other issues
May 23, Dr Schollter-Thal, regular ped doctor probably shots, ugh
May 29th, Dr Forester, neurosurgeon, follow-up and probably to set up a developmental ped dr.

May 12th is Nick's b-day (19!!!)and he will be coming home at some point (he is leaving me in suspense :-) as to when I can go get him.

Don't forget May is stroke awareness month.
And check ou my friend Madi's blog--The Semi-Grand Experiment linked to my page. It's a great read!


Wednesday, April 23, 2008


With the beautiful weather comes the spring colds and yard work. While we can do without the colds--now Roger has it and the girls are getting over theirs, the yard work is fun and it is great to be in the sun. We already feel lighter on our feet. :-)

Kath is awed by the wind in her hair; the experience of crawling in the grass; the feel of the sand in her toes from the sandbox; and climbing into the firetruck, pushing with her feet and beeping the horn. She is also aware of the birds at the bird feeder and enjoys feeding them. She is a loving girl who has learned to 'give kisses.' She clicks her tongue and purses her lips against my cheek when I ask for a kiss. It is charming. She is also climbing into my lap when she wants a hug or a seat. She took three steps the other day but has not yet shown dada, so it doesn't count (according to Rog). :-) When I try to get her to reenact her steps, she promptly collapses her legs and will not repeat it! She is saying 'ma-ma' regularly. And she has begun to chatter more, which is wonderful since she is usually a quiet child.

Alex has been sick and sniffly but still is amazing. Today when we went for a walk she saw a part of the road was torn up. She said, "Your road is falling apart, momma!" I told her she should fix it. She said, "I can't. I didn't grow up yet." She turns 4 Sunday and we have had to coax her into being excited about it--"But 3 is my favorite number. I don't like 4!" I told her that 4 is pretty cool and has its advantages too and that I was pretty sure that once she was 4 , that would be her new favorite number. She said she would have to see about that.

We met with our friend Doris who does healing touch. Kath either reacted very strongly to the touch or to the stranger concept, she practically jumped out of my arms and crawled into the house from the deck. However, Doris worked (probably overworked herself!!) on Alex, Rog and I. Speaking for myself I am amazed at the experience. I could FEEL what was going on. I felt better from my cold, from my achy back, from my stress with just the time she spent on me--and I had Kath and Alex crawling all over me while she did it! It is definately something I will continue to explore for Kath and for the whole family.

As for the writing front. I have actually been doing more of it. Yeah for me. Those who are reading for the kids' updates, feel free to zone out, this part is actually the reason I began the blog . . . but also why I hardly get to the writing part! :-)
I have posted 2 chapters on the forum, received feedback, done some crits on another's work and reworked the first chapter. The reworked piece has actually received compliments from one of the forum's published authors who critted the original piece too. It definately helped me want to find the time to write more and keep plugging away at my story. Ah, successful feelings with the girls and with writing, life is good. Now about those pesky students with spring fever. . . .:-)

Hope everyone is doing well.
Love and peace and happy Earth Day and Day of Silence,

Thursday, April 17, 2008

Spring has arrived and MAMA is back

It has been a busy 'break.' While I am excited that I have started to reorganize or rather gain the upper hand in my house again, I realize I have overly-high expectations as to what I can actually accomplish. Getting sick really set me back, then the girls getting sick, well, that is just always fun and time consuming. :-) But with Alex's birthday coming up I really hoped to have more done--for example, the bookroom. We can't even walk in there anymore and I just feel like I need to hire someone to take care of the kids for a few hours so I can tackle it. Then the days after follow it up so I can do the basement, garage, boys' rooms, girls' room, and my room. So what did I accompish so far? I am not telling you--I still have three+ days of my vacation left.

The girls are feeling better-though poor Alex is still tired, cranky and sore. She loves being able to have ices though. She uses her own scissors to open them up and is very self-sufficient in getting the pop, a napkin so her hands don't freeze and settling down to enjoy the ice pop.

Yesterday Kath brought "Mama" back into her vocabulary. She has to work it, you can see her thinking it before it pops out. It is like watching someone try to speak a language foreign to them. She moves her lips, watches your eyes and then finally will let out a sound. If she gets it right she is very excited and expects you to be too. And, by golly you should be. She worked real hard to get it out!

She is loving being outside so much, but since she is still crawling she is ruining shoes and pants. But that is better than yesterday when I didn't put shoes on her (we are encouraged to let Kath go shoeless so she can feel the ground and have her brain send messages back and forth.) But she cut up, mostly, her right foot. So today she had a thinkish pair of sweat pants on and socks and shoes.

She loves to 'help.' I asked her one day this week if she wanted to help me make cupcakes. She nodded her head and then 'helped' me line the tins, scoop mix and generally made a mess. Since she does not have a lot of fine motor coordination her movements are jerky and powerful. Yesterday she played in the old firetruck we have (if anyone sees one of those Little Tykes cars in a garage sale--and lives within comfortable driving range of our state, let me know--make sure the wheels work though). She struggled so hard to get her fingers around the ignition key-it was like watching someone work a crane from through a game arcade window, her hands were getting the message but not everything was listening at the right time. But, she didn't give up. It wasn't until I watched this for a few minutes that I realized the amazing part was that this was with her RIGHT hand, not her left. I have often said that I am pretty sure she would be right handed-her left hand works like the 'other hand' does. It was just great to see her right hand reach for, work on and struggle with a task. She seems to be using it much more and not just as a helping hand. I also asked her today if she wanted to help us move the sand box. She had just heard me grunting as I pushed it, so once I put her next to the box, she began to grunt. She cracks me up.

Hope everyone is well.
Good nite!

Tuesday, April 15, 2008

May is Stroke Awareness Month

Since the girls and I have been sick I don't really have too much to say-ha! Let's see how far that gets us! But I did want to start off by talking about this web site ( because it helps bring awareness and maybe actually awareness will bring funding for such an expansive field of study.

Before Katharina's diagnosis, I never knew that a baby could have a stroke BEFORE they were even born or that an otherwise healthy child could have a stroke, without or without a known head injury.

I continue to rassle (strange word I am using as a real one) with the whole concept that my baby had a stroke and it caused a myriad of issues for her, some of which are like walking through a mine field, never knowing which step will be a bad one. That is not really true. A mistep will not bring about more problems, but if FEELS like it. Right now. Though as I read more moms on the list-serve I see that it will get better--'it' being my response towards what happened.

So, I encourage you dear family and friends to be aware and informed and of course supportive to any cause which brings about more awareness to strokes, especially children. (I am biased.)

Onto lighter matters-interspersed with the sick matters. Kath has been doing really great with her Coxsackie Virus. I still see some white sores/ulcers in her throat but she is back to drinking her bottle so I am relieved. Her mood is still a bit iffy at times, especially when she is tired, but she is energetic and moving.

Ahem. About that moving stuff. For a coupe of days after Sue (PT) told us to limit her bouncing, we were able to coax Kath to crawl and use her hands. She smiled that big smile and crawled away, happy that she understood and did a corret action, I suppose.

Yeah. That lasted a couple of days. Then she got sick and poof. NOW when we say it, she bounces faster and GRUNTS at us in frustration, as if to say, "THIS is so much faster, WHY would I want to use my darn hands??? Have YOU tried it, mom? It's a pain in the butt and then when I eat stuff off the floor it tastes dirty. THIS WAY I keep my hands clean!" Bounce, bounce, bounce.

When I asked her, "Do you want time out?" today, do you know what she did??? She waggled her pointer finger at my face!?

We are in big trouble with this one. Quite the 'tude.

As for Alex, Coxsackie caught up with her. I hope her aunts Janine and Karen don't get sick from taking her out to see 'Horton Hears a Who'. She ran a 104 fever which made me call the doctor's immediately and Rog took her. She puked in the car on the way there (MY CAR). But they didn't see any redness in her throat and just said, "Oh let us know if she gets around 104." Just did. But anyway now the spots are showing, she is tired then up creating art masterpieces, then cuddling, then up reading a book or wanting to play in the sandbox. She is sleeping with me on the couch tonight so she can stay warm by the fire. One of us should sleep pretty good.

I had what felt like pnemonia and a sinus infection. I couldn't breathe and I thought, "Great! Vacation! I need to get things back on board and now this!?" Since all this has been going on I have not cleaned. Well. I have cleaned, but not well. I have done bits of everything, but not well. So for me this break was all about catching up. I went to the doctor's immediately and he said he wouldn't want to give me antibiotics because IF I had some kind of reaction (what me? something go wrong from something other people take every day? pshaw!) then I would be out of service for longer. He suggested a nasal rinse. Yuck. Well, it worked. My face is no longer swollen and I am able to breath and move around without wheezing and feeling like I should be in the hospital. Before my appointment I felt SOOO bad I thought, "Wow, he could send me to the hospital!" not without a little hope. Hey, when a woman needs a break, watch out! She gets desparate. Anyway, I feel much better, though a bit coughy and congested. At least I feel like I will make it. I had a short time period of the sore throat and I do not envy those girls. I told Alex she can have as many freezy pops as she would like, I think I may need to pick up more tomorrow. :-)

Today Alex was telling me a story and she said, "She sucks." Well, that's what I thought she said. What she really said was "She's stuck." She was also counting, "One pickle, two pickles, three pickles, four pickles, five pickles. Mommy, I have 5 pickles!!" I made the appropriate wow-that's-great comments and tried not to laugh. Later I told Chris in an email that she counted her freckles as pickles and since it was so cute, I didn't correct her. What a horrible mom. He replied (rather quickly now that I think about it)that yes, I was evil, but not to correct her until he got to hear it.

Anyway. I am off. Goodnite. Sorry it wasn't short like I promised. :-)

Keep reading below for the housekeeping tips. No! Not real housekeeping--stuff with the blog! geez. I have enough cleaning, I have no tips, other than make enough money to hire someone to do it for you! ah, someday . . . .


If you are reading this and would like to post a comment, it is relatively easy. Regardless of how scary blospot makes it sound. I do recall having to 'open' an account or blog, but you don't actually ever have to use it. You can just open it, remember your password and you can ignore your 'blog' forever, yet be able to respond on this blog by simply 'signing in' when you jump on the blogspot site. I might actually get around to connecting Chris' blog from Nicaragua! Two for the price of one!
More later.

Saturday, April 12, 2008

Coxsackie Virus

Ever hear of that? Yep, me neither. It is also known as Hand, Foot and Mouth disease, not to be confused with Hoof and Mouth because that is in cows, not children, silly! Oy.

Kath ran a fever Thursday night starting aroung 11:30. So, I called and brought her in on Friday (was 20 minutes late so I had to wait an hour for the next available opening AND I wasn't even seeing Kath's DOCTOR, but a physician's assistant, no, a nurse practitioner!) Anyway, both girls were stellar in their waiting skills while I was upset because I had to wake Kath up to bring her in to wait for an hour in a stew of germs. But it was my fault, I was late, so at least we were still able to have Kath checked out.

I don't really believe she has this virus though since she has shown no signs of blistering on her hands and feet. She tested negative for strep. She does have sores in her throat and now I think I do too. Darn girl grabs my glass and straw and I think "Hey, look! Remember when she didn't do any of that curiosity grabbing?? And look she can drink from a straw! Do you know hard that is? Her mouth is working!!!" Ugh. Anyway, I am hoping she is over this soon (and me too) and we can go back to regular old worrying.

Today she worked on climbing in and out of the back door. The first couple of attempts could have been disasterous if I had not jumped and held her (she was playing on the deck nicely one second so I was cleaning then wham she was in the house and trying to get back outside again.) Luckily, I was never more than 5 feet away, especially since I am not as fast as I was in high school. :-)

Alex is a wonderful first warning alarm system. It's either a loud 'MOM! Katharina is ... (doing any number of things from eating chalk to jumping out the door face first)' or 'Kath, that's a NO-NO! Yuck, Kath, that doesn't even taste good" (once again that is for anything ranging from the chalk to a dog-hair-covered pretzle stick or worse).

Today I want to talk about Alexandra. She is a pretty amazing chickie. She has gone from pretty much being the center (the boys are so much older and gone most of the time) of our attention to . . .well, not being the center. She has a bright sun-shiny smile and personality. She loves to tell stories, make people laugh, sing and dance. She is as smart as a whip (not sure where that expression came from, but you get the idea) and loves to learn and to help. A new passion of hers is yoga. I bought her a childrens yoga DVD and she sets herself up with my yoga mat and plops the DVD in and works on 'her yoga.' Then during the day she will show me her moves, with a very serious face (the DVD is called Silly to Calm Yoga) and very serious yoga breathing and calmness. She paints and draws something every day. She 'reads' to herself, to Kath, to me, to Roger.

Now, under normal circumstances an almost 4 year old (April 27th) may show signs of jealousy and meaness towards the sister who gets all the attention (therapists coming to the house, being told to be quiet "your sister is taking a nap" or "we have to go now your sister . . . ." )

But not Alex. Alex claps the loudest when Kath finally manages to get out the door by herself, when she colors a picture, when she stands for a long time, when she throws a ball, when she does anything at all Alex cheers for Katharina as if this baby didn't just cut the attention she gets from others down to squat. She reminds me of Stargirl in the YA novel called Stargirl by Jerry Spinelli. She is everyone's cheerleader, she sees no boundaries in making people happy. She laughs and makes others laugh. She cries when others feel bad. She makes pictures to make people happy. She truly thinks about other people's feelings and thoughts. She is an amazing girl. She tells us though when she needs a break "I need some mommy and Alex time" or "Daddy and Alex time" and we do everything we can to make sure that happens when she needs it because she deserves it too. She re-energizes me, so it is only fair that we re-energize her.

She began telling a story today about a woman from Coxsackie, but of course, she can't pronounce it correctly. That girl . . . she makes us laugh.

Thursday, April 10, 2008

Full Catastrophe Life

In "Zorba the Greek", Zorba is asked if he's ever been married. His
response, (paraphrased by Jon Kabat-Zinn in his book "Full Catastrophe Living")
"Am I not a man? Of course I've been married. Wife, house,
kids, everything....the full catastrophe!"

From JKZ, "It was not meant to be a lament, nor does it mean that
being married or having children is a catastrophe. Zorba's response
embodies a supreme appreciation for the richness of life and the
inevitability of all its dilemmas, sorrows, tragedies, and ironies.
His way is to "dance" in the gale of the full catastrophe, to
celebrate life, to laugh with it and at himself, even in the face of
personal failure and defeat. In doing so, he is never weighed down
for long, never ultimately defeated either by the world or by his own
considerable folly.

"....ever since I first heard it, I have felt that the phrase "the
full catastrophe" captures something positive about the human spirit's
ability to come to grips with what is most difficult in life and to
find within it room to grow in strength and wisdom. For me, facing
the full catastrophe means finding and coming to terms with what is
most human in ourselves. There is not one person on the planet who
does not have his or her own version of the full catastrophe.

"Catastrophe here does not mean disaster. Rather it means the
poignant enormity of our life experience. It includes crisis and
disaster but also all the little things that go wrong and that add
up. The phrase reminds us that life is always in flux, that
everything we think is permanent is actually only temporary and
constantly changing. This includes our ideas, our opinions, our
relationships, our jobs, our possessions, our creations, our bodies,

My friend and fellow blogger Madelyn mentioned this phrase to me one day and I said, "That is great! I love it!" She gave me this quote and I really feel a connection to it. As I wrote last time, I know how good my life is, despite the many (MANY) issues we have had and have lately! I continue to try to figure all this out, much as I tried when Nick had his accident and we weren't sure what would happen with his brain. But I don't think I truly understood parts of what could have happened, or maybe I was just selective in what I could handle. I drove to the therapies and prayed he would heal, be fine. I prayed his memory would eventually work its way through. That mood swings would disappear. That he would not ever experience a head injury again--or at least for the 6 months the doctors shuddered at. But I always felt he would heal and be okay. I always felt as long as he did his exercises he would be good to go. He is young, afterall. Bad things don't happen to young healthy people.

Even with Roger's head injury--yup, we collect brain boo-boos here--I feel that as frustrating as it is, he WILL be okay. I tell him I see no difference--he was just as distracted and forgetful, yada, yada beforehand anyway! ;-D

This time is different. I have flashes of everything being okay. But I also have nasty reality checks. We have PT two times a week. Speech increases next week to two times a week. OT will be evaluated. Next month Kath will be tested to see if she is aspirating her food with a videoesophagram. She will have a visit to an eye specialist to see about her vision field cut; the neurologist to see how she is progressing; and her regular ped dr for normal progress checks and immunizations, and most likely a developmental ped to keep all the developing into perpspective, too. I think she will be fine, but I see 'fine' as different now. With Nick I figured he would eventually get back to normal. There is no normal here in Holland.

I am not trying to sadden any of you or make you think that my days are filled with a morbid sense of dread. God, no! How can anyone who hangs out with two gigglepusses like Kath and Alex have time for THAT!? But I am --especially when the house is quiet when everyone is asleep--trying to put everything into its folder in my brain. Sometimes I feel I have a brain injury since I struggle to figure it all out.

I think the hardest aspect for me to accept is that I cannot 'fix' this. I can't just try a differnt parenting strategy and voila everything is good. Why the hell not?! Hurumph. Instead I read. I write. I study the therapists. I contact other parents through the list-serve, talk to friends who have struggled too and I try to absorb everything and I try to make it part of my day in dealing with the CP portion of my goofball daughter. And I try to keep in mind that this chick who should be able to walk . . . doesn't know she should be able to do all this much easier than she is. She doesn't know that other kids don't have to reconstruct pathways in their brains to learn. That other children don't need the constant repetition and practice to get 'it'--regardless of whether the 'it' is a reflex or a learned action.

Not yet anyway.

So while she is young I can encourage and support and try to show her that giving up is not an option. That even though she will have to work much harder at ordinary life, she will have an extraordinary life.

This girl already survived a stroke!

So as I celebrate her pushing a doll stroller this week (by herself!) and at the same time I get angry and upset at how unfair it seems that she has to work so damn hard, I will try keep in mind in this full catastrophe life of the miracle that is before me. That Kath is not weighted down in her heart because she may be tripping and falling, she is jumping back up and celebrating her accomplishment of succeeding a 'today' activity! An activity that was harder, so much harder or out of reach, just yesterday! She stands up and dances--even when there isn't any music! This girl is celebrating her life.

As are we.

Monday, April 7, 2008

The bad and the good

I am really glad that I didn't write on Friday. If I had I would not have had the 'and the good' part in my title. I was reading about a woman on the list serve (noted in sites I recommend on this page) and she was overwhelmed by emotion trying to deal with . . .this new way of 'life.' So I am not alone. But some days I feel so overwhelmed that I cannot take a deep breath, my shoulders feel like someone is pushing down on them, and I cry. Poor Robin. One second I am talking about something I read about, next second I am trying to breathe. An hour later in school, poor Lauren and Patty. After that no tears, just heaviness.

I know how lucky we are that things aren't worse. I know I am strong enough to be and do whatever Kath needs. I know Rog and I will make sure Kath will get what she needs -with help. But some days I just feel so sad that this journey is one Kath even needs to take. I never did drugs. I don't drink, smoke, or do anything dangerous--ask my boys-I am boring. Yet this happened and my beautiful Katharina will have to work so hard for the rest of her life just to do normal stuff.

She seems to have stopped saying 'mama.' Not sure why. Will ask Liz (speech therapist) tomorrow. Today Sue said Kath needs to stop knee bouncing to get places because she is loosening up her hip joints and that can cause other issues. My mother used to say, "stop taking your temperature every day" . . .little did she know, I would HAVE to do that for Kath to keep her on track.

This story/poem is one that my friend Donna told me about and I wanted to share it here.

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I love this story/poem because I feel like it is okay-at least with others who go through this, to mourn what I thought I was going to have for Kath and for my family. I feel like it is okay for me to feel sad sometimes as long as I don't forget how wonderful my Holland is too.

That brings me to 'and the good.' There is such great joy in each accomplishment. She took a step! I thought for a second it might have been a falter, but when she plopped down, she took a second and then started to clap for herself. She was quite pleased. There have been no reenactments. I was the only one who saw it so according to Roger's mantra-It only happens if we BOTH see it--it didn't really occur. But . . . . :-) She is a very happy camper who absolutely adores her siblings--Chris was home this weekend and she loved having him around-if just to have one more body to practice her climbing on.

Well, more later. It is late and I still need to read for my classes tomorrow and well, this is long enough anyway!


Wednesday, April 2, 2008

Two days in a row!

Hello all. Ok, Maybe there's two of you. :-) If you are new to blog reading--scroll to the bottom and then roll up. Or not. You may always go backwards in time, like Merlyn. :-)

After I wrote that part about Kath trying to throw herself off the picnic table?? Less than an hour later, she did JUST that and almost put her two front teeth through her bottom lip. Ah, the blood. Ah, the screaming. Ah, frustration. IF she could only make that hand go up to break her fall! I get the feeling that this chickie will have lots of boo-boos because she is so excited to be moving and groving that she is not able to think or be aware at the same time that she can fall. She has to concentrate so much on the action, she can't think of the consequences.

Today with PT, Sue mentioned that she thinks Kath is having issues with tracking and focusing on both sides, both eyes. She is unsure if it is a motor skill (eye muscle) or a visual impairment. So I will be calling to make an appointment.

I have been researching other therapies and have contacted someone in Rochester who put me in contact with someone in Toronto, Ontario about Felderkrais Therapy for Children. I have to keep reading too. I have been researching also hydrotherapy and I think Kath is too young right now for horse therapy. Last week we decided to have Kath evaluated for OT. This week, Liz, Kath's Speech Therapist told us a second time slot opened up, so we are gobbling that up. Kath has been learning a lot of signing, as we have too. The better her coordination, she better we can understand her. She is still not talking but she makes a lot of 'words' with the da-da sound. I am also planning on meeting with a friend about 'healing touch.'

At home we keep trying to engage her right hand as much as possible--for example, I let her finger paint, play with play do and of course color. We try to let her explore textures as much as possible.

Alex has started to 'read.' She rereads books to us after we read them. For example "The Ipsy, Dipsy Spider" may be one you have heard of? She is adorable. She loves to perform-dance, act, play instruments or sing. Or all of the above. She also likes to tell stories about her imaginary friend Nia and how she does all this bad stuff. She also loves to paint and draw. We have her art work in all rooms, taped to all surfaces. Ah, yes and she has begun to tell jokes. Knock, knocks are a favorite. She is quite inventive with who actually does the knocking! She is quite the chickie.

I miss the boys terribly, especially lately. I know they are doing well though so that helps.

Roger is sleepy and tired. Taking on too much.

I just wanted to write tonight, so here it is, with all its lumps and warts. More to follow--the writing, hopefully not the lumps and warts!

Good night!

Tuesday, April 1, 2008

An Attempt at Clarity

April 1st. Usually a time of mischief, especially when you have young children learning about "April Fool's Day!" and when you teach freshmen! However, I am starting new with this first day of April. Ha! How many times have I said that? No, that was rhetorical-don't go back and count! I guess the important thing is that I keep trying, not how many times I have to . . .keep trying.

A couple of months ago, Kath was diagnosed with CP. One lonely, scary night I found a blog from a woman with a child who has CP-her daughter was 17 months-old (at that point 2 months older than Kath). What I didn't realize until I started to read was that the journal part that I was reading was about 2 years old. So, I was able to read as this girl progressed. I was able to follow her growth and then even email her mom and ask some questions! I found such comfort in that.

A couple of months ago I seemed to have stopped writing. I had no energy for any 'me' stuff, only work with Kath, play with Al, keep in the loop with the boys and of course help Rog deal with his head boo-boo after his accident. My school stuff swayed to the back as well as my writing.

Breathing was an accomplishment. Not even housework seemed to get done (yuck anyway). All my energy was geared to keeping an appearance of calmness and control.

Yeah, well.

I am pulling together all of this to get to a point. On the writer's forum I made my goal of writing more and staying focused. I am going to use this blog to rework and hone my writing voice. To keep a journal of our fight with CP for Kath and for any other mom who might be awake one night feeling completely scared and overwhelmed. To organize my thoughts and to hold myself accountable to . . . myself.

I also hope that in this endeavor I see more accomplishments of mine as opposed to the list that never seems to go away with uncrossed out items.

Have to run, Kath is practicing flinging herself off the picnic table. No-oo . . . she is trying to climb and sit with finesse, which only LOOKS like she is throwing herself off. Ah, kids and April Fool's Day.