Friday, June 27, 2008

6 Month Eval, Great Strides, End of School Year, more Hippostuff, another tick and two chipped teeth

Ah-- another boring week!

I wish.

I will start with the eval. Great. We made great goals for the next 6 months that if Kath continues the path she is on, she should have no problem reaching them. One was getting better balance--that should help the chipped teeth. I will get to that. She is like a different child from 6 months ago. Quite the change, quite the work.

Our team of therapists continue to give us great ideas to work with and on, we would be lost without them. Welcome to Laurie, our newest member who does the OT.

School ended. Technically it ended Thursday--but I still had grades to turn in today and I need to go back and clean my room. Roger had graduation today but he goes back Monday for conclave--one of his very own brain childs to reflect on the year. (I think brain childs is a new word or phrase I created it!)I am so glad that we are 'off' now. I think I just made it. My stress seemed to be starting to overtake me. I was having problems with sleeping-but it became ridiculous this week. I had canker sores. I had headaches. I had chest pains. I am so incredibly tired--but as I said--sleeping is impossible. Hopefully that will change.

I am looking forward to trying to regain control of my stress eating (she says AFTER eating the chocolate!), exercising and of course writing. And reading. Our reading contest continues--more at another time . . . .

The girls had horse stuff today. Alex got to brush and feed her horse and another horse too, in addition to riding. She learned how to 'steer' and Christine said it won't be long before she can ride on her own ( I am hoping 'long' is a ways off . . .;-))

Kath was tired today. I worked this AM and then we ran chores so I thought she would nap in the car but she didn't really so today she slouched a lot and had to work real hard. Liz (Horsey Liz)said that Kath was great because she wouldn't give up. That was great to hear since that is something she does need to improve on for regular, old, on the ground therapies. I watched as she slouched and fought like heck to put rings on the cone--if that were here at home, she would have gotten up and walked away! She didn't give up though. She gets so excited when she sees the horses-- it so fun to watch and Alex has a smile from ear to ear for the whole session.

Kath had another tick on her. Ugh. I was a coward at first and called Roger (he was chaperoning his graduation), Maddy and almost Nick. I also almost just took her to the doctor. I am so afraid of it breaking off inside her, but after that happened the last time when Roger did it, I finally screwed up my courage and took care of it. I doused it in alcohol and then plucked it off. Her skin was red before I got it off but now it is a little red dot. Whew. She needs to wear a necklace of repellant.

Ah--today she fell on the tiled front foyer before Robin left us for the summer. Since Kath just buried her head in my shoulder, I thought she was okay and just shaken up. Especially since there wasn't any blood. On our way to hippotherapy I turned in the car (I was stopped waiting for bagels) and saw her lip was swollen and cut underneath. Then tonight when she took her bath to wash off her own whipped topping bath . . .I saw she chipped her two front teeth. Ugh. Just a little, but I hope they don't bruise. I hope she didn't damage any nerves. It is not like I can stop this whirlwind of activity from moving and trying new things, but she is just so clutsy and unbalanced that she does damage to herself. Scares me. Balance. Need to work on balance.

I will work on my storytelling--after I get some rest. Missed a friend's child's/former student grad party tonight. :-( Didn't realize what time it started and the kids were pretty beat after horse-day. Not to mention Roger was in bed by 7 (party starting time) and I am looking forward to sitting on the couch and trying to stay away enough to read at least one chapter of The Historian. Gee, I remember when I read a book at a sitting. Now I strive for a chapter--a page, a paragraph. Anyone want to be on my team for the reading competition??? :-) More lata.
My apologies for any errors.

Sunday, June 22, 2008


Friday was our second hippotherapy session.

Kath was scared the first time, you may be able to tell by the pictures. She screamed and freaked for the first few minutes. But once I walked next to the horse (Mark) and held onto her, she settled down and after awhile she held onto the handle with her right hand. She pet the horse and said 'stop' and 'go.' She even bounced her encouragement to Mark. I only have two pictures of her on the horse and that was before she actually became relaxed and enjoyed it. I took more this week and may be picking them up tomorrow.

This week there was no freaking. She has been signing 'horse' for the past two weeks. She allowed Liz to put the helmet on easily, as well as the belt. She even went easily on the horse and went without me! She worked on putting rings on a cone with Mark walking--so there was a lot of bouncing and balancing. She held onto stuffed animals (frogs) while the horse walked and she even sat on the horse backwards and leaned on both hands to keep her balance--that is a good strengthening execise. I was able to see how hard Kath worked, and she lasted longer this week, but I could see how hard it was for her and how hard she had to work to maintain her balance. She is amazing.

Alex had a sibling lesson and she was delighted. She knew that she would have to learn how to take care of the horse, she rode Babe, and not just enjoy the ride. She was willing to do that, but this time she just got to feed him a couple of carrots afterward. before we left the house to drive to EBCPT she said, "I am so excited, I am jumping out of my skin!" She cracks me up.

Well, that is it for tonight. Hope you enjoy the pictures!

Wednesday, June 18, 2008

OT, Hearing Test, Pulled Teeth, Walking Backwards,Car Issues (still)! And Tim Russert.

So . . .yesterday Katharina had her first OT appointment with Laurie and Kath was her usual charming self. She does this cute scrunchy-face smile that Nick used to do. She was exhausted by the time it was over; she worked hard extracting herself from couch cushions, pulling apart interlocking toys and assorted other games. She does really well with new people, especially if Alex is around (and Robin or me).

Today began with Roger taking off from school to take Chris to the oral surgeon. He had ALL FOUR wisdom teeth pulled! I thought they only did one side at a time so that eating could resume . . .I thought wrong. He had IV sedation and doesn't remember telling Roger "I like IV." Goofball. He is in pain but we are alternating the medicine so that hopefully will be contained quickly.

Meanwhile at almost the same time--Kath had her hearing test at Albany Med. The audiologist loved her and worked really hard to get good info (I am sure she always works hard-not just for those she likes). She heard tones I was not quite sure I heard. She moved her head in the correct direction each time. The earphones were put in her ears next and she did great for that as well. Then she had a test for other parts of her ear/hearing and did well until the end when she was tired and wiggling, so the machine kept resetting. But Leslie, the audiologist, was so impressed with how well-behaved Kath was anyway. Alex of course was the fantastic big sister/mom helper she always is. Kath's hearing is all within normal ranges, as far as they can test with her age and wiggliness. I have been so impressed by the people I have met on this journey and this lady was another wonderful soul.

After this I decided to finally take care of the blood work for stroke indicators. I miswrote last time when I said that Dr. Foster wrote the script-he authorized it but Dr Schottler (ped) was the actually writer. The script was FULL of tests. They needed 19 mls of blood! After they took the needle out the first time, I assumed they were done. But, alas, no. (I guess they had trouble with the spot and that is why they took the needle out.) They said they needed 15 more mls. I asked how many they took with the first needle and they said 4. I almost started to cry. I asked if we could come back and finish another day, but they said it had to be sent out the same day/shipment. Ugh. So this time they worked on taking it out of her hand. She screamed, but it was mostly anger, although when they had to reposition to rebleed it, it was from pain. She was a trooper and was asleep before we were out of Albany.

Wish I could have been too.

She is starting to bruise up though. She doesn't seem to have the same pain sensors, but that will be a writing for another time.

I have been putting this bloodwork off because I am an idiot. Because I felt as though 1) the reason she had a stroke was due to me and since she is not in utero anymore, then she couldn't possibly have another stroke; 2) I was/am so overwhelemed I didn't think I could handle anything else (as if having the test means she will have one); 3) I am afraid of what the tests will tell me. And afraid I can't deal . . .with one more thing.

While waiting to get the test there was this little girl and her family in the lab waiting room. They asked me a ton of questions about Kath and told me their daughter who was the size of a 9 month old-and running around--was actually 2 and just very tiny. She was getting tested to see what was up. The mom -who I never saw before- told me that I was a good mom for taking care and making sure I was doing everything I could to help Kath. Mind you, I was near tears the whole day. I didn't admit to her that I held this script in my pocketbook for a month and that I was petrified of having it done. But from where ever this woman got her strength and however she shared it--I thank God. Little rains of grace at times of fragility. It gave me the strength to stay put (and not delay it anymore), to hold and sing to Kath, to not cry, to try healing intentions, to breathe. I hope I somehow gave that woman something, but I doubt it. Maybe the next time I will be the strength when someone else needs it.

On my way home, I had to drop my car off at the shop AGAIN. The last time they got the wrong part--we have been going crazy with this for the last two weeks, at least. First they didn't know why the car was there--even though I had spoken with someone the week before and requested an appointment AND left a note in the car. Next day they didn't have my number . . .once again on the note. Then wrong part. Then no part. Now hopefully tomorrow will end it-they will fix it and we will be set. This place has been great in the past, so I think this is just bad timing. My stress is so high with the end of year and all Kath's stuff and then Roger signing up for retreats and classes even though I asked for peace this summer and house projects to be worked on. Continued money concerns. Worrying about financial aid for the boys for school. Grandpa in the hospital. Dad having treatment. Yada yada yada. So although a car is stupid in the grand scheme of Life, it is one more stressor in a stressed out person's life. :-)

Tonight . . .Kath decided to start WALKING BACKWARDS. As if watching her negotiate walking fowards isn't harrowing enough, now she is walking backwards and laughing with glee as she does it. How this girl trips LESS going backwards is beyond me. Ah. :-)

I have been trying to write more this week. I have worked on my story some and I need a lot more time with it, but it is going. I am also trying to read-I have a couple of books Maddy lent me and a couple from the libe on Kath stuff and homeschooling. I also have some classic lit books that I feel I must read, though it would be much better for me . . .if I didn't KEEP FALLING ASLEEP each time I started to read Ivanhoe!!! Although this year is not quite over I have been getting excited thoughts of ideas to teach for next year. I guess when that stops happening I will know it is time to leave teaching.

Alex told me when I tucked her in that 1-she will remember me for ever (not sure what she knows . . .but I told her that was good anyway ;-)); and 2- she will miss me when she is 'growd up' (I told her not to worry, she could build her house on our property, so I could hang out all the time with my grandkids and I could still cuddle with her. She corrected me--'snuggle, momma.')

She came down this morning 'All dressed. I wanted to try something new!' She was wearing red socks, purple stretch pants that were too short for her, a blue princess shirt with a her white tank t-shirt ON TOP of it. Ah, this girl is such a little fashion bug. And in case you are wondering . . .no, I did not allow her to wear that to the hospital today. She has the confidence for it, I do not. :-) Anyway, she spilled yogart on it. :-)

Love my crazy life. Love my crazy family.

PS. The death of Tim Russert is such a sad marker. What a wonderful human being we are now deprived of; a good man, great father and critical thinking journalist. When the world loses such a deep souled person, it seems only right that the rest of us step up our game to try to help the make up for the loss. To keep the world on its correct spin.

Monday, June 16, 2008

Let me try to catch you up . . .

Well, in my head I have been writing. But the reality is that I have not. Let's start with what I thought would be a great title "The tick, the hives and the neurologist" A bit like a badly written teen horror flick, but in reality another week in our lives. The Tuesday after my last entry I found a tick behind Kath's ear while giving her a bath. Before Roger parked his car I was yelling for him to come up and get the tick out. :) Brave mamma. Then that Wed and Thursday I woke up and began having hives. Not really bad ones, just enough for me to say, "Hey, why am I suddenly scratching my skin off? Ohhhhh . . ." Then Kath had her follow up neurologist appointment. It began with the doctor coming to call Kath (love that he does it himself!) and not realizing which one was his patient (Alex or Kath). He watched her play and was amazed at her progress. I asked him about 1000 questions and he patiently answered them all--even when the nurse came in and began to hustle around to rush him "There are more patients." He maintained focus on Kath and would not allow himself budged and for that I will forever be thankful and sure I chose the right neurologist (aside from the tons of other things he says and does "don't read the internet, it will only freak you out," "I can't give you a diagnosis, no one knows how kids respond and heal from a stroke; don't underestimate her.")

So, he told me that her stroke affected her left paritial lobe, possible brain stem IF hearing has been compromised, but he did not think so. She has something called pachygyria-there is an area of tissue that didn't receive oxygen and that has a potential for epilipsy. That area has a tissue loss that now contains fluid. When he read the report from the MRI, he said the technician/reader saw possible 'mirror damage' on the right side-which would indicate the stroke impacted the right side of her brain as well. He quickly assured me that he didn't not see that. He gave me a script for bloodwork--to see how likely she may be to have another stroke. I can get a copy of the MRI on CDROM from Albany Med (eish). He said that even though her risks for seizures are 10x more likely than another kid, he is not worried and therefore I am not to either. He suggests that we see a doctor of Physical Medicine and Rehab about the possibilty of scholiosis.

Chris has come home from school and will be getting his wisdom teeth out Wed.

Nick is on his way home from Tennesse from Bonoroo a music festival.

Alex is doing great. (More later.)

Kath is mobiling around and starting to work on more speaking. We have been spreading 40 yeards (may not sound like much but let me tell you!!!) of dirt and creating a garden. She is all over the backyard with us, walking and falling and getting up and chasing after us. We have started to take her on walks up the driveway/hill and around the circle. She loves it! Doesn't want to hold hands, wants to turn and go where she wants. She is a hellion with shopping now. She has started to say "ice" for ice pops (she wants those for breakfast, lunch and dinner). She is saying "yes" and signing it and nodding her head. She is also saying a couple of other words which escape me right now. I don't think anyone else would recognize them as words except Alex, Liz, Sue and I. Maybe. :-)

She had hippotherapy the Friday before this last one. After the initial freak out of the helmet, the belt and the getting put on a large animal, she loved it. Liz (horse/physical therapist, not to be confused with Speech therapist Liz) allowed me to walk next to her and hold her leg as she walked around on the horse. She wouldn't put her hands anywhere near the animal at first, then she used her RIGHT hand to hold on! Then she actually began to pet Marc (the horse) and tell him to Stop and Go. She bounced in her seat too. Alex got to ride too and she was thrilled.

The whole weekend anytime I asked her if she wanted to play--Kath would sign "horse." Now when she wants to make me laugh she signs 'horse' and I say, "No! There's no horse here!" She laughs and signs it again.

Today she managed to grab a magic marker. She used to play with them and work on her fine motor skills by taking the top off and putting it back on. Her hands would be covered but it was great fun. Well, I stopped her from playing with them because she wrote on something she shouldn't have--don't remember (who had the stroke??). Today she found the marker and disappeared into the playroom. I found her standing in the doorway working the cap on and off. She realized I was there and had the guiltiest look. I realized then that this lil girl is possibly even smarter than I thought-she knew I didn't want her to have it, so she hid it!!! Funny, funny.

Next week is her 6 month evaluation for early intervention--all team members will gather and we will make our plans for Kath for the next 6 months--PT, Speech and now OT. Sue and Speech Liz have already told me that as they looked at their first evals they are so amazed-that it is like looking at a different kid. Sue finished her test today and said that Kath was at about 12-14 months developmentally now. She has shown remarkable progress. She is an amazing girl.

School will be crazy for the next two weeks so I may not be as good as I should be--but I have 5 rolls of pictures waiting to get picked up-of the hippotherapy and assorted gardening and so on. Kath starts OT tomorrow with Laurie and then speech in the afternoon. Wed she has a hearing test at Albany Med. Thursday speech. Friday hippotheray. I have been having car problems--car is in the shop getting a new axle and something else, who knows? Brain stuff is easier to understand! And mostly covered by insurance. (gulp)