Day Number...??? What Day is this???

I have lost track of what day this is. It seems like I have been here at UCLA for months and months.... but alas, tomorrow Katie finally graduates from the program. it has been a life changing journey... not an easy one by any means... but the best thing we could have done for our girl... and us.

Let's see... what's been going on since the last entry... 5 days ago....

Katie went for her MRI and did amazingly well. She got a bit teary with the IV... but at one point as the nurse was taping the IV in place and administering the medication for sleep, Katie asked the nurse, "Do I have to go to sleep?"... at which point the nurse said, "No... you can stay awake if you want". Katie smiled... and then proceeded to shut her eyes and tip sideways... and then was out cold. Mark and Bea said it was SO FUNNY to watch. We should know the results of her MRI in a few days.

I had my endoscopy/colonoscopy the next day and got a little surprise. The doctor said he had to do a biopsy on 'something' and I need to see him in two weeks to talk about his 'findings' and the results of the biopsy. Oh joys. I wasn't expecting them to find anything. I hate surprises like this.

Anyway... Katie has had a few difficulties with her homework that was given at the end of last week. She had two major meltdowns... saying she didn't know how to do the work... her legs and stomach hurt... and she got ragingly-angry and banged the table, threw her pencil and aggressively cracked her knuckles and shouted and cried.... but eventually, she sat and did it... correctly. Afterwards, she looked up and said, "That was dumb to cry like I did. Why did I do that? It was easy." I told her she is not the same little girl she use to be... and she doesn't have to be afraid of homework anymore. We decided to call it "School Practice" rather than homework... it wasn't such a frightening term. Sunday she did three pages of homework... and where it use to take her 45 minutes to an hour with constant supervision and a big BATTLE to get it done, she did it in less than 15 minutes... CORRECTLY... and on her own with no talking or supervision!! Who is this kid????

For the first time in our lives, Katie sat in "big church" with us... and decided that she didn't want to color or draw... she wanted to sit and listen. She sat quietly.. and participated in communion and worship... and at one point got teary... dabbed her eyes... and then leaned over to me and whispered... "I just love God so much". (Who is this kid???) Mark got to baptize a few people in church Sunday morning... and it was a good thing for Katie to see her dad doing that (and mom too!) He was in his element... and I could tell her was living out his pastor's heart.

Oh... I almost forgot... Saturday the three of us (Mark, Katie and I) went to the Animal Shelter and adopted a puppy. She had to get spayed first, so we couldn't bring her home till Sunday afternoon (yesterday). The name we have given her is "Tinker" (we call her Tink)... she is 10 months old... and she is a cross breed of a Miniature Doberman Pincer and a Pug. She has the body and coloring of a Tiny 6 pound Pincer... but has the Pug floppy ears and shorter snout. She is ADORABLE!! Katie is in heaven... and I must confess... mom and dad are highly enjoying her too. She is still a little woozy, sore and low key since she was spayed yesterday morning.... but she is sleeping well in her pet carrier next to me here at the hospital right now... and she has already bonded with the three of us very well. Hopefully one day you can come and meet her... she will certainly charm your heart like she has ours.

This morning Katie has another blood test... and has now become a "Pro" at it. I don't need to hold her arm anymore or give her instruction on what to do... and she let's the tech know that she doesn't want tape... she'd rather hold it for a while herself.

So tomorrow Katie graduates from the program. I will bring in a tray of Muffins for the party they will have for her... and we will certainly get a TON of pictures. Grandma and Grandpa Cook will get to be there for the event... and of course, Daddy, Mommy and Aunt Bea wouldn't miss it for the world. Katie has worked very very hard to get to this place, and she deserves all the accolades and support we can give her.

I wish we could have had everyone come to this event... but lack of space made a huge limitation... but if you would be willing to... we would be thrilled if you could send Katie a congratulations card in the mail.

Our address is:
27206 Cross Gate Ct.
Canyon Country, CA 91387

I will post some of Katie's graduation pictures on this blog a day or two following the ceremony.

One other newsy item... tomorrow evening following the graduation, we have to keep Katie awake throughout the night as much as possible... only letting her sleep LESS than 3 hours. She is going to have her Sleep-Deprived EEG the next morning (Wednesday) . Thank God for Denny's Restaurant which is open 24 hours. I plan on taking her there around 3AM so she can eat whatever she wants... as much as she wants... and play Skip-Bo cards with me and long as she can. Anyone want to come and play with us?? Nope... I didn't think so....

Thursday I will take Katie for a visit to Fair Oaks Ranch Elementary school so she can greet her friends, the staff and her teacher... and get familiar with them again. While there I will have a meeting with the staff and give them a brief "training" session on how to respond to Katie from here on out. We don't want to reestablish old bad patterns again.

Friday Katie will return to school again... for a full day. I have no idea how it will go... my hopes are high but my emotions are reserved and bracing themselves. Time will tell.

The following week school will be out on Spring Break... so Katie will have time to get her head and internal clock back in sync again... no more waking up at 5:45 in the morning as we have for the past two months. No more LOOOOONG drives on the freeway or eating breakfast in the car. No more Monday-Morning blood tests. And... she will get into the habit of feeding the dog, giving it fresh water, taking it out to pee.... along with feeding her fish before school. Yup... she's growing up.

Katie has decided that she wants to become a child Psychologist. I think she'll make a FABULOUS one!!

Chow 4 Now,
Susan

Day Thirty-Two: Get Ready... Get Set....

Monday evening when I got home from my weekend away, I was met by a very cheery, compliant, calm and yet energetic Katie who had dozens of things to show me... and a song to listen to that she has been writing on her keyboard. The change I saw in her from the time I left to the time I got back was DRASTIC!!! Truly, she has become the child I have always wanted... that child I have jealously watched other mom's experience... and thought I would never get to know. I remember being so afraid that we were mentally losing Katie... moment by moment... rage after rage... and she was getting father and father away from us. But God hasn't just answered our prayers.... HE HAS FAR EXCEEDED THEM BEYOND OUR WILDEST IMAGINATIONS!!! In fact, I am tearing up here at the computer just thinking about the last two days. I will never be able to explain the difference... I just hope one day you will be able to spend some time with Katie to experience it for yourself. It's God, at His very best.

Mark, Bea and I met with the clinician teams today (social worker, psychologist, parental trainer) and all agreed that Katie will be officially GRADUATING from the program next Tuesday. I had high hopes of inviting everyone to her graduation, but the room will be limited in space and will only be able to be attended by invitation. I apologize if my jumping-the-gun was a disappointment to you... it certainly wasn't intentional. I am SO PROUD of my girl... I wanted everyone to celebrate the payoff of all her hard work. Unfortunately that won't be an option for us.

During our talks this morning, the clinicians were very clear with us that they have been very pleased and thankful for all OUR hard work too (and it HAS been HARD work on our parts). They said that Katie was a very lucky girl to have such an extremely committed and passionate family who want to invest themselves and everything they have into her wholeness. I had to chuckle... we feel the same way about all these clinicians. They have FAR EXCEEDED our expectations, and have become like family to us. Their commitment to Katie and our family has been astounding and breathtaking to all FOUR of us.

I left the last meeting... with my heart soaring... and with a verrrrry long 'laundry list' of things I need to do and accomplish before Katie's transitions back to her home school. Her brain MRI is scheduled for tomorrow. (Please pray... she needs to go under anesthesia for it... and she will need to get an IV... and I won't be there.... I will be home preparing for an upcoming test). Mark and I have a scheduled meeting with her Fair Oaks Ranch School team (principal, nurse, teacher, school psychologist, behaviorist, resource worker) to write the IEP for her school return (Individualized Education Plan = Special Education in a normal classroom setting). It is a highly legal document. I have meetings with the Regional Center's case worker. Also, Katie gets to pick up her orthotics this afternoon at 4:00 PM which will fit into her new shoes (we need to buy) so her ankles and feet will get the restructure and correction they need. Mark and I have many home protocols we need to pre-define regarding Katie's computer use, TV use, homework, consequences, praise, rewards, and parental responses to various challenges. We have therapists we need to contact and set up for the future meetings. We have a puppy to buy... we need.....

Did I mention a puppy??? Ha ha ha ha... we promised Katie that when she graduates from the ABC clinic we would get a family dog since she will be better prepared and more responsible and emotionally safer to take care of one. She has proven herself very well... and so it looks like.. this Friday... after my endoscopy/colonoscopy (luck me), that we will make the trek to the Animal Shelter and see if there is a dog with the "Conner" name on it. (Figuratively speaking, of course). Our dog run is ready and our house (and hearts) are prepared.

Our plan is that Katie will graduate on Tuesday... her Sleep Deprived EEG will be Wednesday... I will take her to visit her school/teacher/friends on Thursday (so I can get her re registered)... and the she will go for her first FULL day back at school on Friday. Doing it that way will give her a break after her first full day and ease her back into the school setting one day at a time. The following week will be spring break, which we are thinking of taking a family trip somewhere in our tent trailer.

Then... that next Monday... its full swing into transition. I have no idea what to expect... but God does... and we will all be holding His hand tightly as we maneuver through those exciting yet uncertain days ahead....

Oh.. look at the time!!! I've got to run upstairs and get my day end report. I don't have many more of those to go now!!! Yippee!!!!

Chow 4 Now.
Susan

Day 31: A bump on the noggin

THURSDAY

In Susan's haste to get out of town, she did not finish Thursday's blog. I'll share one comical incident. During our visit with "Jessia Therapist," we were shown a portrait Katie had drawn of our family. Susan stood on the left and I stood on the right. Katie was seated in the middle...dressed as a queen. Guess we have a little work to do on defining who's in charge at our house.

FRIDAY

Today's events were highlighted by a less than gracious fall by Queen Katie. It seems that while playing outside, she fell backward and hit her head on the hard surface. Mr. Paul, the recreational therapist, said Katie complained of being dizzy and having a slight headache. As a precaution, the staff recommended that Katie be seen by her doctor. So, at about 1:00, I rode the elevator up to get her and down to walk to the car, fully intending to make an appointment with Katie's pediatrician while driving home.

Lo and behold, we had a flat. To compound the situation, my never-ever-used temporary spare was flat. A quick phone call to AAA (well worth the $65 annual fee) summoned a tow truck driver who hooked up the car and pulled us through Westwood to the tire shop. As "coincidence" would have it (there are no coincidences in God's kingdom), the shop was owned by the same chain I purchased the tire from originally. After 20 minutes, the flat was fixed...at no cost. We quickly...okay, driving through Westwood on a Friday afternoon wasn't that quick...drove through McDonald's for a late lunch and rushed to the freeway.

To crawl.

By this time, two hours have passed sinced the Queen took her spill. She has yet to mention any side effects, other than when I asked her how she was feeling. So when Katie's pediatrician suggested a trip to urgent care, I decided to continue my "wait and see" approach. The decision was a wise one.

We arrived home about 4:00, relaxed a bit, and jumped into a game of SkipBo. It seems that sometime in the last few weeks, Katie's brain has slowed its gyrations to the point where she can multi-task quite well. It was amazing to watch her strategize every move. I could almost see the wheel turning as we played. Needless to say, this encouraged me greatly. My enthusiasm, waned, however, after she won the first game. After this, we played Uno, another card game. Katie is like her mother: she doesn't like to lose. I was so proud of her for keeping her emotions under control when frustration set in. In the recent past, a meltdown would have ensued.

For dinner, Katie decided to experiment in the kitchen. She created her own dish consisting of hot dog buns, tomato paste, cheese and a variety of dry spices. After a brief stay under the broiler, dinner was served. Katie was so proud of herself. I, on the other hand, wasn't affected in the least.

I can't begin to communicate my joy over Katie's progress in the last few weeks. Her behavior has become wonderful. While she still struggles a bit with appropriately expressing frustration and anger, so do I.

Day THIRTY: At least two more weeks of this...

I began Katie's new Lithium level last night (the new order of the Psychiatrist) and she tolerated it well. He explained to me that since we are making a change to her level of medication, they need to observe her for the next two weeks to be sure she tolerates it well over the long haul. So the 405 freeway is going to remain my morning monster for the next two weeks. Sigh... oh well... whatever it takes....

This morning daddy woke Katie and took her to her Pediatrician's office at 7:45 for a quick physical exam which will give her clearance for next week's MRI sedation (anesthesia). Everything went well there... and then they swung by the house and got Bea and I so we could all go to the clinic for another "Marathon Thursday" with the Parental Trainer, Psychologist and Social Worker.

The teaching was good this morning, addressing many of the SPECIFIC challenges we have in parenting Katie. We talked about many parenting 'procedures...Natural and Logical consequences... penalties... about Quiet Times... vs... Cool Out Times... vs... Time Outs... all which have their place in different settings., and Which behaviors to ignore, comment on... and which to move in quickly. We have finally come to understand that you cannot parent Katie like other kids... doing so would defeat us and Katie (as it has in the past). But as we have implemented the 'scripts', steps, and procedures they have taught us, we have seen a wonderful turnaround in many of Katie's responses to us. My only regret about this ABC Clinic is that we didn't do it sooner... but praise God, neither did we do it later either.

The tree of us just finished a big lunch and are ready for our next meeting at 1:00 PM with the Psychologist and Social Worker. This session tends to be more emotional for us than the first... so I have checked to see that I have our box of tissues close by, and we're ready to walk to the elevators now.

Will finish up this blog once we get home this evening.

Chow 4 Now,
Susan

Day Twenty-Nine: Are we done yet?????

This morning Katie had a little difficulty waking up, but was able to get herself going and we got to the clinic on time as usual.

As I was making the long, congested drive this morning, I realized that I have come to the end of my traffic tolerance... and these very early before-dawn drive-in-the-dark sleepy-eyed I-don't-want-to-go-to-school mornings. I'm not talking about Katie... I'm talking about me. As we were pulling in the parking lot, Katie mentioned that when her time at the ABC Clinic was over, she wanted to come back and visit the staff regularly... and although I held my composure and tongue, everything in me wanted to to shout "NO!! I am SO DONE with driving the 405 Freeway!!!!" My actual response was... "Well.... we couldn't get here in time after school, what with the traffic and all. That more than likely won't happen". Whew.... I love UCLA and all, but there's a LIMIT to my affection for this place.....

But I must admit that this Family Waiting Room downstairs has been nice... especially since I have access to the computer and can get some work done (and a few games of Literati in too). So here I sit... fixing to type up a few forms and make some calls to the Regional Center and then go get some lunch.

*****************

When I picked Katie up this afternoon I saw the Psychiatrist who commented to me that he wanted to raise Katie's medication strength up a little more so it would be at the therapeutic level. SO tonight after I brought Katie home, I picked up the additional milligrams at Sam's Club and started her on them at bedtime. We will get another blood level next Wednesday and see where this takes her to.

Katie went to church and had a tough night there... very angry and emotional but couldn't put her finger on why. The children's pastor called and asked that Katie be picked up early... she still wasn't doing well. Bea picked her up and brought her home... and she remained edgy till bedtime. She got into bed and knit for a while... and then said goodnight and turned off her light.

Tomorrow morning she has a doctor's appointment for a physical exam to assure that she is in good health for the anesthesia they will give her next week for her MRI. One of the girls at the clinic will be graduating tomorrow morning... and we're not sure if we will be at the clinic in time after her morning appointment. I kinda think that is eating on her emotionally and might be part of her agitation this evening.

Well, one more day and then I get my time away at the lake. I've gotta go find my fishing pole and tackle box. Pray that I find it.

Chow 4 now,
Susan

Day Twenty-Eight: Open yer mouth and say, "Ahhhhh...."

Morning.

I bombed last night. So hard, in fact, that I didn't move all night... stayed in one position... and didn't even stir till 6:00 am. Oops... I was to get up at 5:00 am as usual... and have been doing so on my own without an alarm up to now. But I hit that"wall" last night (the same one you hit on occasion I'm sure) and I overslept a little bit. Katie was a trooper and got up quickly without complaint (actually cheery) and was ready to go lickity-split. We threw breakfast and lunch together in a flash and were on the road by 6:30. Can you believe it... we actually got here at 7:38... only 8 minutes late. Thank you God.

This afternoon Katie sees Dr. Cha, her orthodontist. She is in line to get braces on her teeth... but Dr. Cha wants some of her baby teeth to come out first so we don't brace teeth that will be coming out anyway. Katie has a few teeth to go... so my guess is that this will be a simple check up to be sure we are on course.

And then, of course, there's the issue of keeping her awake tonight... all night... till her test tomorrow. I think ALL NIGHT is unrealistic... but it has to be less than 3 hours of sleep... so I'm going to spend my day today thinking up ways to keep her occupied and busy in the wee hours of the night... like going to a 24 hr Denny's restaurant and let her eat everything she wants.... ALL NIGHT.

HA HA HA HA.... anyone want to join us???

*************

SUPRISE!!! The test for tomorrow morning was cancelled... so we get to sleep tonight!! Woohoohoo! I had to reschedule it for April 1st.

The evening was so-so. Katie had another emotional meltdown but was able to recover herself within a few minutes... so that was good. She continues to show fleeting moments of volatility and loss of self control when angry... but is able to redirect her anger and calm herself in a short period of time. That is definitely an improvement. The clinic told me that in the afternoon she became angry and teary because another child was acting out in class and they had to close the session. The instructor told Katie to put her head down and "breathe slowly"... and after many minutes she was able to re-direct herself to calm again. This has been ongoing at the clinic I found out... but has been showing signs of lessening since the Lithium upgrade. They are contemplating raising her Lithium a few grams more to see if that brings her more stability. Unfortunately that will mean a few more weeks of blood tests to check the stability of the level. The 15 member clinical team will meet tomorrow morning and discuss her case. They don't make any decisions unless it is agreed upon unanimously. I like that. So we'll see....

Before bed time, we sat as a family and searched for a dog on the Internet. We have told Katie that when she graduates from the program we will buy the family a dog. We saw two verrrry smallllll dogs that were great possibilities... and Katie went to bed with "puppies" on her mind. It's so nice to see her fall asleep in a happy state. That's how kids should always fall asleep.

Peacefully.

Now it's my turn. Nightie Night.

Chow 4 now.
Susan

Day Twenty-Seven: The Last of the Weekly Blood Tests

We had a good weekend together as a family. Katie did wonderfully... which is becoming the norm now. Mark and I set tiles in the dog run and grouted them with sand this weekend so when we do get a dog, it can go do it's "thing" on the grass at the end of the dog-run and not get it's feet muddy. It was an ALL WEEKEND chore... and one that Katie volunteered to help with. We thought she'd help for the first few minutes and then get bored and distracted and quit. Well, she surprised us by hanging in there for a couple of hours... lugging sand back and forth from the wheelbarrow to us and back again. On Sunday, she helped daddy dig up some plants... transplant a few others... and feed the roses while I planted some fresh flowers about the landscape. We are continuing to marvel at how consistently well she is doing. Notwithstanding she has her blow ups here and there throughout the day... she is able to recover herself quickly and redirect her energy effectively and pull out of the anger. We can live with that.

Mark and I realized this weekend that our ages (50 and 51) have more to do with our bodies than we had realized. I can barely walk and sit this morning because I am SO SORE from all the yard work over the weekend... and Mark is also making painful noises when getting up or down from his seat. When did we get old??

Katie had her last weekly blood test this morning and did well. Now she won't need to get them for 4 week intervals... and then later, it will be once every 6 months.

Mark and I came together this morning because we have a genetics appointment here with Katie at 2:30 today. He has brought some job-hunting work to sift through today as we wait for Katie in the family room.

I'll let you know what the outcome of that appointment will be later this evening.
**********************

We met with the geneticist who explained to us in depth about the Mobius Syndrome that Katie was born with. It is NOT genetic... simply an unexplained formation as a fetus (congenital) which is incurable and will be with her for life. Her 6th and 7th nerves in the frontal lobe of her brain are paralyzed which caused her right side to be smaller than her left... and because of a restricted blood flow due to those palsied nerves, it caused her heart holes, high palate, deformed ankles and feet, learning and behavioral problems and the entire right side of her body to be much smaller than her left. They told us that her brain stem is more than likely also deformed... and the geneticist can't wait to see the results of her brain MRI on the 26th of this month. He was thrilled that the medication we have her on is helping her to the degree that it is... but he said that her behavioral problems will be with her for life.

What comes to mind at a time like this is.... "But God....in His infinite mercy.... " (and I believe that He will finish that sentence in His perfect time).

On the way home Katie had a huge anger fit due to her not being able to get her knitting project just right... and it lasted all the way home... banging... crying... hitting... loud crying...and then continued several minutes after we arrived. It was a hard evening for her... but eventually she 'righted' herself and was able to redirect her emotions elsewhere. Katie and I played cards before bedtime (she is becoming a shark at Skip-Bo) and then went to bed to write and journal for a while.

Mark and I are pooped. Tomorrow Katie sees her orthodontist about getting braces on her teeth. Wednesday morning is her Sleep Deprived EEG.... so needless to say, Tuesday night is going to be one of the biggest challenges for us to get through... she can only sleep a maximum of 3 hours that night. I told her she can go to Denny's around 3 AM and order anything and everything she wants to eat... whatever it takes to keep her awake till 9 in the morning. Ugh... just thinking about it is making me tired.

Nightie night, friends. Will chat with you tomorrow.

Chow 4 Now.
Susan

Day Twenty Six: Beginning the Organic Testing.

Pannera Bread was exceptional... have you ever been? I think we have found our new family hot-spot for dinner!!

Katie had an exceptional night... no flip-flops... played cards with daddy and I... slept well... and cheerfully got herself ready for the clinic this morning. I am really beginning to love my time spent with her. I know that sounds rather weird for a momma to admit about her child, but when much of the time has been spent handling crisis after crisis... questioning weather what I am seeing is a need or a manipulation... constant battling and being told I am hated or that she hates herself... keeping things from getting broken because of frequent frustrations over petty things... watching new mental and emotional and physical oddities occur and feeling helpless and in the dark... that when moments like this morning occur, when we drank hot chocolate and cheerfully played cards in the cafeteria (we got here 20 minutes early this morning) it is wonderfully refreshing... and that make me WANT to spend more time with her. I don't feel as if I need to be "on guard" and always protecting her or myself... or our stuff. I have always loved Katie... but now I'm really beginning to "like" her too.

Meanwhile, this morning I got the authorization for all the testing that needs to occur. Katie's Renal Ultrasound will be this afternoon at 2PM. The MRI will be March 26th at 10AM (with sedation). You can be praying for us on that test... she will need to get an IV for the sedation... and I assure you, she will NOT like that... getting an IV line in can hurt far more than a blood test... and they leave it in for the procedure. I got a call this morning that the Sleep-Deprived EEG has also been authorized and I need to call this morning and schedule that appointment. I don't know about the prep for that yet, except that she will only be allowed 3 hours of sleep that night. Do I have any volunteers who would like to help me with that one??? HA HA HA HA HA... no, I didn't think so....

Well, I've got to get on my morning calls and emails. I'll finish this blog later today.

**********************

The ultrasound went well... Katie has this funny little giggle when she gets nervous... and she giggled and giggled for the first few minutes... then she quieted down and tenderly chatted with the technician about how it was going. She truly is charming.

We had a good roast dinner (thank God for crock-pots that work all day while you're gone), and afterwards Katie went across the street and played with Julian her friend. Mark watched some TV... and I planned a much needed get-away by myself for next weekend.

Well... I just heard Katie come in the door... and I think family time is about to begin.

Have I told you recently 'Thank You' for your prayers for us?? Our emotional faces wouldn't be above water without them.

Thank you!!!!

Chow 4 Now,
Susan

Day Twenty Five: Our first Meeting with the new Psychologist, Ms. Jessica

This morning the four of us made our way down to UCLA for our usual Marathon Thursday (all our meetings on one day) and we got to finally meet with Ms. Jessica, the psychologist who took Ms. Melody's place. WE LIKE HER!!!! She is kind, smart, and quite 'direct' in her questions. We can see how God has orchrastrated the timing of the doctor rotations. We loved Ms. Melody... but it's a new day with new issues... and this new Psych is going to carry us the rest of the way... very capably. Katie loves her... and it's turned out to be a win-win situation.

The clinic has given us new forms to fill out to document Katie's bizarre 'flip flops' when they occur. It will log the frequency, length, actions, responses and outcomes of those moments.

Tonight we are going to dinner at the new Pannera Bread restaraunt near our home. It's nice to be able to go out for dinner on our Marathon days here at he clinic... I am usually wiped out by the end of the day, and the thought of going home to make dinner is often overwhelming.

I trust these blogs are keeping you updated without boring you to death. They sure help me not have to repeat myself when 'enquiring minds want to know".

Chow 4 Now,
Susan

Day 23: All's Quiet on the Emotional Front

I (Mark) should leave more often.

Katie is experiencing a remarkable turnaround that I have witnessed for over 24 hours. In that time, there have been zero...count them...zero meltdowns. No anger outbursts...no "I'm stupids"...no whining. I've always been anti-drugs, especially for kids, but the combination of clonidine, abilify and lithium seems to be a perfect prescription for our Kate-girl.

I can feel myself beginning to relax emotionally. The sense of dread and foreboding have diminished and I'm hopeful that Kate can lead a reasonably normal life (whatever that means). By no means are we finished, but huge progress is being made.

Perhaps is was all the Blue Bell I ate in Texas...

======

Guess I should have eaten more Blue Bell.

On our way to church tonight, Katie began feeling "weird." She said "that talking thing" was starting again. Susan asked her why...she couldn't (or wouldn't) explain. She could, however, whine and complain about how bad she felt.

I was on a phone call when Katie asked that I take the freeway instead of surface streets. I chose not to (even though I heard her request) because it was faster to go via surface streets. Katie got very agitated and began mumbling "I'm stupid." She continued her grumbling the rest of the way to church. Once there, she seemed insecure...even keeping emotional distance between herself and Cheyenne (her BFFL...best friend for life). Katie buried her head into Susan's chest a few times before we walked away. As we left, we saw Katie in the parking lot with her teacher and a friend. Kate's disposition was better, but still not herself. Bea picked her up after church and Katie had returned to "normal." Go figure...

Mark

Day Twenty Three: Daddy comes home today!! YIPPEE!!!

Daddy (Mark) comes home today from Texas! His plane was scheduled to leave at 9:00'ish this morning and should arrive at LAX around 11:30. Since UCLA is so close to the airport, I will run and pick him up when he calls and then bring him back here to the hospital until Katie is done for the day. He has reported to me that he has gotten plenty of rest and recovery and that he is SO READY to come home. It's a good thing... I am SO READY to have him home.

Katie had another good night... and despite a few here-and-there blow-ups/banging things , she had a good evening. She even elected to help Bea made dinner and clean up afterwards... (Who is this child??)

The contrast between her good and bad times is more and more apparent now that her emotions have stabilized more. Her good moments are the norm... very pleasant and fun to be with... and her angry moments are extremely sudden... extremely high... but over within minutes (not hours). Her ability to get herself back in control is largely due to this new medication. As much as we HATE having to give her pills such as this... it is restoring her peace and preserving her self-esteem. Perhaps we can ween her off of these medications once she is older and in better self control. Who knows? But for now, this is the right choice... for ALL of us.

I can feel my shoulders beginning to relax and settle down into place... my emotions are less on "constant guard" now, and I so badly want to sigh a big breath of relief... but... years of disappointment still have me pensive... and a few good days doesn't mean that everything is "okay" quite yet. Nevertheless... I am extremely hopeful... and thankful beyond words for the few days of peace and stability we have experienced with our girl.

I am very aware of your prayers and how they are carrying us through this bumpy journey. Today was the first day in a LOOOOONG time that I not only slept ALL THE WAY through the night... but I woke up and had to push myself HARD to get going... and here I sit at the computer BONE TIRED... so tired I want to cry... and every sofa, chair and open piece of carpet beckons me to come and lie down on it. I think I've hit my wall... and it's not going to let me pass this time. Mark has agreed to take Katie to the clinic tomorrow and let me have a day off. I was going to go to my favorite thrift shop and get some much needed clothes for Katie.... but I don't know... it will depend on how I feel when I wake up in the morning... or should I say, "IF" I wake up. LOL.

I drove and picked up Mark around 11:30 this afternoon. It was SO GOOD to hold him in my arms and have him close again. We sat in the Family Room at UCLA until the end of day when we got Katie. Another great report... she had a good day. Things are looking up.

We drove to the foot clinic in Reseda where they made a cast of Katie's feet in order to make inserts for her shoes. Our insurance company agreed to pay for them... so that's $300 we can keep in our pockets... and though we have no promise of course, perhaps the end of all the leg and foot pains Katie has experienced over her life. We will need to get new ones made every year as she grows.

Once that was done we headed home... ate dinner and enjoyed the evening doing much of nothing... but we did it together.... all under the same roof. Katie is absolutely charming... with very few emotional blow ups... and then, even when she does, she recovers herself much faster than she use to. Mark was simply amazed to experience her like this. So much has changed in the week.

Well... it's off to bed. Nightie night.

Susan

Day Twenty-Two: Sunshine on Our Faces

Good morning. I trust your weekend was a good one. Ours was!

Katie and I hung out together on Saturday... played a few games of cards... ran a few errands... and did a lot of nothing. Her temperament was good for the most part, and she spent much of her time either sketching or creating a fun craft on her own. There were only a few times that she became extremely angry and caustic over the weekend. In the afternoon we were scheduled to go to a party of one of our friends... but for whatever reason, Katie suddenly became angry and couldn't regain her good demeanor... so I told her that her anger wasn't something that they would want at their party... so we wouldn't go. She became even more angry (a normal kids response) but within a 1/2 hour, she was watching TV and settled with the fact that we weren't going. We had a very pleasant evening after that... and there were no more outbursts.

On Sunday, she went to church with Bea while I slept in (till 11:00 am!!! HALLELUJAH!!) and then they went to lunch and had a fun afternoon together. Later on in the afternoon, they returned home and we all went to the grand opening of the new Target near our house. We found out they had a Starbucks inside the store... so we got ourselves a Frappechino and played a few games of UNO together. That was fun.

A strange phenomenon we noticed with Katie was that when she did have a season of anger, it occurred with a sudden flip... sometimes in the same breath... and then, just as sudden as it came, it would go.... and she would be absolutely charming. For instance, on one occasion, Katie was happily coming downstairs to kiss me goodnight... very cheerfully... and then suddenly she stopped in the middle of the stairs... got this weird look on her face... and then shouted angrily, "I'm not tired and I'm NOT GOING TO BED!!!" When asked why she was angry, she said, "I AM SO ANGRY AT MOMMY!!" Why??? She didn't know... but she was fuming, caustic and defiant. She continued to pitch this fit... refusing to go to bed (with fire in her eyes)... and when I applied one of the techniques that I have learned at the clinic... she suddenly FLIPPED again... and within a second, she smiled and very sweetly said "Okay... let's get me to bed. Goodnight mommy"... kissed me goodnight... and bounded upstairs as happy as a lark. Bea looked at me stunned... "Now that was freaky," she said... "She changed so fast it made me dizzy". No kidding. This has been happening with more regularity... and more noticeably since the current medications she is on are helping to stabilize moods. She is FAR LESS angry as she has been... actually very delightful... unusually so... but when she does get angry... it is sudden without any warning, and the contrast is very apparent. Black or white... flip flop... within a second or two.

Through the night (she slept with me) she had a few bad dreams and I would roll over and pray for her. She talked a LOT in her sleep last night... and around 4:15 she was wide awake and ready to get up. It's nice to have the company when I can't sleep either. So Katie and I got up and took a shower together and got ready in the same bathroom. It was great fun. We gathered our stuff together and were out of the house by 6:00 am. When we got to the hospital I reminded her that she needed to get her blood test this morning... and with practically no response at all, she said "Okay..." and had it done very easily. I was astounded. No fight. No whining. No anger. Who is this person??? Can she stay? ((wink)) It's like we are getting our girl back finally... I have so missed her... I feel as if we all are finally walking out from beneath that dark cloud and we all can feel the sunshine on our faces. Ahhhhh.....

So she is upstairs with the others... working through her day... while I make my phone calls, send my faxes, and play a few games of Scrabble with my sister online (the highlight of my day). Mark comes home from Texas tomorrow afternoon, and I can't wait.. I have really missed him. We have talked on the phone a few times, and he has said he has had a few good cries, a lot of good sleep, wonderful fellowship with his family, caught some fish out of the pond, and is now ready to come back and give me a break. Katie, on the other hand, has mixed emotions.... she is very excited to have daddy come home (she has missed him a lot), but she isn't too thrilled to give up her spot on daddy's side of the bed.

The days end report on Katie was very positive... she is showing signs of good improvement. The doctor said that her medication levels taken this morning were theraputic levels and we will hold at this dosage for now. We had a wonderful ride home... absolutely NO traffic (where was everybody??)... and Bea had dinner waiting for us when we got home. (YAY Bea!!) What would I do without her???

Bea and I sat up for a while and watched "Dancing with the Stars" on TV (I had never seen it before). It's not something I would watch again... but it did pass the time and helped me unwind. When I looked up at the time, it was 9:30 pm.... "Why am I up watching this when I need to be in bed", I asked her. We giggled at my poor choice... so I bid her goodnight... finished this blog... and am now on my way to bed.

Chow 4 Now.
Susan

Day Twenty-One: Flip Flop

Once again Katie has a restless night... talking, sitting up, and going to the bathroom... all in her sleep. At 4:15 AM she sat up wide awake and was done sleeping... so we both decided to get dressed and eat some breakfast before leaving this morning.

Unfortunately that didn't happen as we had planned. Once Katie got up and dressed herself, she suddenly became caustic and mean spirited... sassing me, complaining about everything, slamming chairs, doors, and household items... and was very very angry. Momentarily I got caught up in it, feeling myself getting more and more angry at her... but then I took a big breath, began the tools I have learned (CCL: Calmer, Closer, and Lower the voice) and emotionally stepped away from the situation. I recovered myself well despite the fact that Katie kept "going off" at me. She continued to whine and slam things once we got in the car and wouldn't eat her breakfast. About 1/2 way into the drive... in the same breath... she suddenly flipped... her voice volume and tenure changed and she went from "I HATE THIS BAGEL... I DIDN'T WANT IT... THIS SUCKS..."... to.... (very sweetly) "Thank you mom for this bagel, even if it's too brown. I love you. Are we almost there yet?" She changed so fast it made my head spin. I made note of it and asked her..."You seem to suddenly be in a better mood. What changed?" She sweetly said that she didn't know, and continued to eat her breakfast. OOOookaaaaay....

We got to the hospital 45 minutes earlier than usual, so we went to the cafeteria and drank some hot chocolate and played a card game. She had a delightful time and was the honey-girl I so love. At 7:30 we put our cards away and went up to the clinic where she greeted everyone cheerfully, gave me a kiss, and walked into class.

So here I am in the parent's room wondering what happened this morning... but glad for whatever it was.

Will finish this later today as always.

Chow 4 Now.
Susan

Day Twenty: Coming and Going

Katie had a bumpy night... but nothing out of the usual. She slept with me in bed, and much of the night I laid awake listening to her cry out & talk in her sleep, grind her teeth, and get up to go to the bathroom 3 times. Around 4:15 am, Bea came to my room and was uncertain of the time (she thought it was 5-ish). We had a chuckle, and since I couldn't sleep, I asked her if she wanted to play a few games of cards. So there we sat at 4:30 am playing Skip-Bo in our pajamas. What can I say.... True Friends for sure.

This morning We all came to the clinic together for the Family Support Meeting... and then I drove Mark to the airport to catch his flight to Texas to visit his family for the next 6 days. He didn't want to leave in lieu of the goings-on yesterday, but I encouraged him to go and get a rest, that we would be fine here... and if by any chance I needed him, I'd call him to come home. SO after a kiss goodbye, I drove back to the clinic and spend the afternoon with Bea.

The day for Katie was uneventful, however, she was very subdued today. It's no wonder... yesterday was a roller coaster for her, and she must be exhausted.... I know I am. The clinicians said she had a good day and didn't have any more hallucinations. Thank you, Jesus!

She seemed in good spirits on the way home... and aunt Bea bought her a Starbucks for the drive. Katie went right to her keyboard to play and sing once we got home... and afterwards, I took her to McDonald's for a "mommy and me" time... so Bea could get some alone-time for a while. Katie did well till I told her that she couldn't have a dessert since she couldn't finish her food. She became very angry.. and slammed her food and napkins on the table. Those are the moments that our new "parental training" pays off. I quickly shifted gears and mono-toned'ly said, "Okay, it's time to go now"... picked up the trash and threw it away and walked to the door. Katie was right behind me... and her attitude sweetened up immediately.

when i got home, Bea helped Katie get her bath and wash her hair. (Did I tell you that because of her challenges of recent days we haven't made her get a bath?? Let's just say she was starting to smell "tangy"). A bath was much needed... especially since she is sleeping with ME tonight.

Thank you for all the comments you have left and the prayers you have been offering for us. We are presently riding on those prayers of yours... especially when we are too tired to pray and our emotions are scraping the pavement. We can "feel" your love and the tremendous assurance of God during those dark times... in a very supernatural way. I know that without HIM and YOU we wouldn't be standing right now.

Sleep well my friends. Tomorrow is another day and I intend to get all the Z's I can tonight in preparation for it.

Chow for now.
Susan

Chow 4 Now.
Susan

Day Nineteen: "I'm Going to Kill You" and the Gun

Yesterday was the last day we got to work with Dr. Bender (Katie's Psychiatrist) and Dr. Keller ("Miss Melody" the Psychologist). Because UCLA is a teaching institute, they rotate doctors in and out of various programs every few months for a wide variety of experience in their specialty areas. Doctors Keller and Bender rotated to another part of the hospital yesterday and we have two new doctors working with Katie and us... Dr. "Jessica" who is going to be Katie's new Psychologist, and Dr. "Whooziewhazzit" her new Psychiatrist (haven't met him yet). They have received the "baton" of information on Katie from their predecessors and will start their new posts today. We got to briefly meet Miss Jessica yesterday as she was walking out the door, and we could tell Katie really liked her already (they spent some time together during the day yesterday). I believe I may meet the new Psychiatrist this afternoon... or tomorrow.

Meanwhile, Katie had a good evening last night, and even ASKED me to teach her how to play full-handed chords on her new keyboard. I can't remember the last time she asked me to teach her ANYTHING. (Now that's progress.) She had to work hard to stretch her tiny little fingers to finger each chord... but within the hour she was playing and singing "Jesus Loves Me" while daddy and mommy sat there with their mouths gaping open... astounded that this sweet little girl, challenged with so many life-obstacles, had picked up this instrument so quickly. For several minutes I reflected back to when I was her age... sitting in the back bedroom in my grandparents house... wearing grandma's old sweater... tapping out songs by 'ear' on her piano and singing at the top of my lungs. And now the next generation is continuing the family gift of worship. It never ceases to amaze me how that happens....

I hope your day is a good one.... I will, as always, finish this blog later today.

********

The day has taken a frightening turn of events and has caught us all off guard... while I was getting Katie's day-end report, I saw a lot of people kinda fluttering around... and they never brought Katie to me. When I went to go retrieve her, the gathering room door was shut and the nurse quickly intercepted me and rushed me into a side room. Katie was audibly and visually hallucinating. She was hearing voices telling her that they were going to kill her.. and she saw a gun (several times) pointed at her (no body... just the gun). This had been going on for 20 minutes, and several doctors were in assessing her.

Dr. Mary O'Connor (a highly renowned specialist in Child Psychology) gave me the report on Katie after assessing her. She said that Katie's psychosis (hallucinations) have absolutely NOTHING to do with the medication she is on. In fact, right now Katie has almost NO medicines in her body. The Lithium level in her is almost non-existent, and the Clonadine she is taking has no properties that would cause this problem.... all it does is suppress body tics. What we are seeing in Katie is a strong continuation of brewing psychotic issues that have been slowly increasing over a period of time. As she is maturing, so are they. We remember, at one point around Christmas time, how Katie couldn't remember where she was and couldn't recognise us.... and several times before that we remember her telling us that she didn't think we were her real parents and that we had her trapped in our home. This is just a further development of that same psychotic thinking.

Dr. O'Connor told me that if it happened again at home tonight, we should comfort Katie and let her know she is safe. If she became inconsolable, or if the hallucinations or voices didn't stop, we would need to call 911 and have them transport her to UCLA's Emergency room and they would admit her to the inpatient ward. When I heard that , my heart sank... I had been unprepared for such news... and I was alone at the hospital and couldn't reach Mark by phone. His cell had been turned off. Praise God I eventually got hold of Bea and Mark and was able to explain all the goings-on and prepare them before we arrived home. The freeway was a mess... the rain was absolutely POURING... the roads were slippery, and I had locked the back doors with the child locks lest Katie hear or see an frightening image and try to jump out the door while on the freeway. I dare say that was the most stress I have EVER experienced in my life so far. Nevertheless, God was with me... and we arrived safely home.

Katie has continued to see the pointing "gun" off and on all evening... but seems to be settled and at peace right now as she lies in bed with daddy trying to get to sleep. She will sleep with me tonight in my bed (Mark gets her bed) and will continue to sleep with me while Mark leaves tomorrow for Texas for a week with his parents. He thought he should stay and not go, but I told him to stick with his plans since he really needs to spend some time with his parents... and I have Bea here with me if I need the help. And of course, if I at any time need him to come home, all I'll need to do is call and he will be on the next plane.

I am beyond tired right now... and I need to get to bed ASAP as tomorrow morning will come very early. I can rest with assurance that.... "God will make a way, where there seems to be no way..."

Nightie night,
Susan

Day Eighteen: Flat Feet

This morning we got a later start out the door thanks to a 9:00 am appointment with Katie's orthopedist in Encino. The report is (no surprise) she has flat feet and her ankles turn inward. Outside of that, there doesn't seem to be any impairment. He told us to go buy her some extremely well made shoes with good arches at a specialty shop... and he would submit to insurance a recommendation for personally-formed shoe inserts for her (that would need to be changed out every 6 months as she grows). These cost $300 each... and insurance doesn't usually cover them. Nevertheless, he would submit it... and play up the Syndromes she has and see if that would motivate them to pay for them. It will take a few days to find out if they will.

We noted today that as Katie played with her Gameboy (an electronic hand-held game) that she would talk harshly and caustically to it as she played... and if anyone were to talk to her then, she would respond caustically at them and act very sassy and disrespectful. Despite our attempts to curb this, she would not control herself. I thought of taking the game away from her, but I knew this would send her over the edge into a huge hysterical meltdown, and I didn't want to deal with that in the car on the way to UCLA. So everyone in the car grew tense and quiet (except Katie)... and were greatly relieved to drop her off. I spoke to the parental trainer about the Gameboy and our frustrations and asked her how to handle it. She said she was very happy to speak to us in regards to this in our meeting with her this afternoon.

Bea has a headache... Mark is a little edgy and the stress has me also edgy, tired and achy in my shoulders. I think we all need a good masseuse and a week away in the Bahamas. Mark will get close to that.... He leaves Thursday for a week alone in Texas with his family there. Bea and I will hold down the fort here... but if there is anyone who would like to give Bea and I a respite this weekend, feel free to let us know ((BIG grin)).

As always, I will finish this report at the end of the day.

************

Well, our day at UCLA is finally over and it was a lot harder than we expected... but then, whenever we meet with the Psychologist and the Parental Specialist it ends up being an emotional roller coaster day. I would never say we have been bad parents to Katie... in fact, I think we have done very well in our parenting skills... but parenting a child with this configure of challenges cannot be approached in the same manner an AVERAGE parent would approach it... and we are now having to re-learn many of our basic interactions and skills with Katie and with each other. This is giving us a whole new understanding of the phrase, "You can't teach an old dog new tricks".

OH YES YOU CAN... (but it takes a lot longer and it's a lot more painful).

Nevertheless, we ARE learning and I want to give big KUDOS to Bea and my honey of 10 years.... and me too! We are all pressing through the hard moments and challenges with great consistency, even though we aren't seeing a temendous amount of change YET! I kinda liken it to dieting... consistant discipline and looking forward to the prize (and not at the disappointing scale) will eventually bring the change you so desperately want.

In regards to the Gameboy, we got some very good ideas and marching orders that we have implimented this evening... and we are already seeing pretty good results. It gives me hope.

Tonight is leftover homemade chili, garlic bread and a heavy dose of "early to bed".

Chow 4 Now,
Susan

Day Seventeen: It's Got to Get Worse Before It Gets Better

"It's Got to Get Worse Before It Gets Better".

That's a phrase the professionals at the ABC Clinic have told us over and over as of late... and this weekend we saw the truth of that in action. I am far too tired (physically and mentally) to try and describe to you all that transpired... so I will only give you the highlights...

- Katie had a HUGE emotional rage/fit on Saturday which lasted a little over 1/2 hour and needed to be sequestered in the guest room till she could calm herself down. This took place on Saturday when her "BFFL" (Best Friend for Life) Cheyenne had a sleepover.

- Cheyenne knows about Katie's emotional challenges and was amazingly understanding towards her. Later, when Katie told Cheyenne to not come to the house anymore because she gets out of control and can't stop it, Cheyenne told Katie she knew about her 'problems'... and questioned why couldn't she come to the house. Katie said it was embarrassing for her to be seen like that... at which Cheyenne replied, "Oh Katie... that's okay... you don't need to be embarrassed in front of me. I'm your best friend and I'll always love you even when you're out of control and angry. Don't ever feel embarrassed in front of me. I love you. We'll always be friends."

- I am starting to have memory "black outs" in which I can't remember sections of a day. This has happened twice in the last two days where people around me had to tell me about things I have said and done (albeit nothing noteworthy) because I can't remember. It's scary, but the folks at the clinic say this is normal when a person is physically and emotionally drained. It's the minds way of coping with great emotion when pressing through a difficult situation. They say we are doing a good job pressing through and maintaining consistency in using our new parenting skills, but I need to get as much rest in as I can when I am in a neutral place. (No kidding...)

We had to leave the house earlier this morning (I was up and showered at 4:15 AM) and were on the road at 5:15. Katie had her first weekly blood test this morning in which she did AMAZINGLY well. She actually giggled as they drew her blood (a nervous little giggle) and not once did she whine or complain. I was so proud of her.... and I could see she was proud of herself too.

The rest of the day was non-descriptive. She had a good day with no serious incidents, and the drive home was a breeze. The Dr. told us the level of medicine (from the test this morning) was very low, and now we could raise the dose of her Lithium up. I started that this evening.

When I got home, I fell into bed and took a very good 3 hour nap. Can you say "HEAVEN"?

The rest of the evening I got to go to my Bunko Game Night (that gathers the first Monday of every month). It was a nice time to "Play" with my friends while Mark stayed home with Katie. I didn't win any prizes for the night, but I did get time away from my current 'life'... but in a way, I still won.

Outside of a small meltdown, Katie did rather well at home with Mark and went to bed on time. She is still having a difficult time expressing her feelings in written form and resisting the "homework" her psychologist has asked her to do. I pray she engages herself eventually and succeeds at these self help tools.

Chow.
Susan