Today is Mark's day to blog, so the update will reflect my thoughts, ideas and stereotypical male brevity (just the facts, mam...just the facts).
The drive in this morning was delightful. Katie was talkative, cheery, fun. And, so were the rest of us. Armed with our comprehensive recaps of the previous evening's events, we walked into the ABC Clinic ready to share our stories. Both Barbara, the parenting expert, and Melody, the psychologist, were beaming with pride over our accomplishments. I had expected them to be concerned that yesterday's meltdowns...and our reaction to them...would be considered abusive and inappropriate. Instead, they applauded us and encouraged us to keep going. Melody sat on the couch trying to hide her giggles as I described Katie's screaming and flopping.
The rest of the day will be spent chilling and waiting. Susan is playing Mexican Train Dominoes, Bea is reading and I'm writing. After lunch, we'll watch the F.A.T. video Susan mentioned in yesterday's blog. Then, it will be time to pick up Katie and dash home.
A few "beneath the surface" thoughts about yesterday. For me, yesterday's episode answered a nagging question whose answer I have needed since we began this process: how do I parent when Katie is melting down? How much of her episodes are caused by emotional, mental and physiological conditions that Katie cannot control? When do I remain firm and unwavering in my expectation and when do I let it slide?
The reality is that we can expect Katie to do what we ask her to do. We may have to adjust our expectations of instant obedience, but that doesn't negate the reality that Katie is capable of obeying more than I believe she can. And to expect less of her is wrong...even when she protests loudly.
We have to adjust our styles...no more yelling upstairs, no more frustrated parental reactions, no more coddling and pampering. Instead, we are to become a broken record: "Katie, put on your shoes." And when she doesn't do it, repeat "Katie, put on your shoes." And when she doesn't do it again, "Katie, put on your shoes." And we are to do so in a loving, supportive manner that encourages Katie to become less dependent.
We certainly don't have all the answers, but we're seeing progress. And that's encouraging.
Mark
Friday, February 27, 2009
Thursday, February 26, 2009
Day Fifteen: Marathon Thursday
Katie had a very unsettled morning... angry at everything and everyone... but once we got in the car and she started eating breakfast (which she had sourly called "Lame") she brightened up for the remainder of the drive to the clinic.
Mark, Bea and I all went together today since it was "Marathon Thursday" again... three hourly meetings with separate specialists throughout the day. Because each one of the meetings tend to be rather emotional in nature, our exhaustion level runs high by the end of the day. Hopefully we'll eventually acquire better emotional 'sea legs' for these more challenging days and learn to pace ourselves better. Meanwhile, we are mentally walking arm-in-arm, holding each other up as we go.
Our meetings with the parenting specialist, psychologist and social worker this afternoon was hard but very beneficial. We were instructed a new way to respond when Katie has her emotional "melt downs" which is going to challenge all of us when that time comes. We are to resist "rescuing and calming" her when she works herself into hysteria... and suggest very mono-tone to her that she needs to calm and control herself. We are to ignore her screaming, crying, psychosomatic pains, whining and flailing... and maintain the "broken-record-monotone" suggestions for her to use the tools the ABC clinic has given her to calm herself and work through the pains. (Of course if there is an actual reason for her pain, then we need to move in and help). We were also instructed that we need to help her become more independent in her daily functions (drying herself after a bath, putting on her shoes, brushing her teeth, etc...) and not allow ourselves to be drawn into her whining and accusations of not "loving her" and to those things for her. As I said.. it was hard but good instruction.
The days end report was that Katie had a good day... a few meltdowns... but overall did well and succeeded to ignore a new child who was chiding her about not doing things well. She seemed in a good mood, and we had a good drive home.
We had an hour downtime before we were to leave for dinner out... and a few minutes before we were to leave, Mark asked Katie to put her shoes on. She said her tummy hurt and she couldn't and told us to go upstairs and put her socks and shoes on for her. Mark and I looked at each other and knew there was no time better than the present to begin our new parenting instructions.
Very monotone Mark told her that we understood she didn't feel good but she needed to get her shoes on. She began to explode and cry and whine... but we very kindly held our ground and again (broken-record style) told her that she could put her shoes on upstairs or in the car... but she needed to get in the car. After 15 minutes of crying, "You don't love me's" and "You don't care about me's"... yelling, whining and resistance, she slowly made her way downstairs... shoes in hand... and after a few minutes of crying that she couldn't get in the car... she THREW her shoes in the car and got in.
On the ride to the restaurant we experienced her worst emotional blow-up ever.... I put some quiet music on and she SCREAMED at the top of her lungs... "TURN THAT MUSIC OFF!!!" I very monotonely said, "No.. this is my turn to pic the song and I want to hear it". She became even more enraged, demanding that I turn it off. Mark and I remained very monotone... ignoring her volume and theatrics, and told her no. In addition to her loud crying and hysteria she began stomping her feet. I told her that she needed to calm herself down using the techniques that the ABC Clinic had taught her... but she refused. (Did I tell you I had my earplugs in all this time?? That was another suggestion to me from the team. They worked GREAT!)
When we got to the restaurant parking lot, Mark told me to go in and meet Bea and get a table... and he and Katie would be along once she was able to calm herself. Mark drove Katie to a far-away stall (so as not to draw attention by the noise) and sat in the car while Katie began hitting the window with her fists and flopping her body all over the back seat. He ignored it all (yay Mark!!)... and after a while Katie demanded that Mark get out of the car and leave her alone. He kindly refused saying that he wanted to stay in his seat. But once she asked, "PLEASE leave me alone".. Mark stepped out to the side of the car and quietly prayed for her as she continued her VERY LOUD hysteria. A few moments later, she cried out, "Daddy, I need your help!!!" Mark opened the door and asked very calmly... "How can I help you?"... at which point Katie jumped into his arms, threw her arms around his neck, and IMMEDIATELY STOPPED CRYING. He asked her if she was settled and she said "Yes". A few seconds later as they were waling towards the restaurant, Katie said very matter of factly, "Now that was stupid. A 9 year old girl shouldn't act like that."
The rest of the evening at the restaurant she was the "perfect child"... happy, compliant... and very respectful and content. Go figure...
The three of them went on to Walmart after dinner to get some groceries, but me... I went home immediately after and went directly to bed.
I have to tell you... Mark and I felt so "empowered" with our new parenting approach. We won the battle, and our emotions weren't strung out afterwards. And we could see that Katie could 'right' herself given the Independence. THANK YOU Jesus... and thank you ABC Clinic.
Chow 4 Now,
Susan
Mark, Bea and I all went together today since it was "Marathon Thursday" again... three hourly meetings with separate specialists throughout the day. Because each one of the meetings tend to be rather emotional in nature, our exhaustion level runs high by the end of the day. Hopefully we'll eventually acquire better emotional 'sea legs' for these more challenging days and learn to pace ourselves better. Meanwhile, we are mentally walking arm-in-arm, holding each other up as we go.
Our meetings with the parenting specialist, psychologist and social worker this afternoon was hard but very beneficial. We were instructed a new way to respond when Katie has her emotional "melt downs" which is going to challenge all of us when that time comes. We are to resist "rescuing and calming" her when she works herself into hysteria... and suggest very mono-tone to her that she needs to calm and control herself. We are to ignore her screaming, crying, psychosomatic pains, whining and flailing... and maintain the "broken-record-monotone" suggestions for her to use the tools the ABC clinic has given her to calm herself and work through the pains. (Of course if there is an actual reason for her pain, then we need to move in and help). We were also instructed that we need to help her become more independent in her daily functions (drying herself after a bath, putting on her shoes, brushing her teeth, etc...) and not allow ourselves to be drawn into her whining and accusations of not "loving her" and to those things for her. As I said.. it was hard but good instruction.
The days end report was that Katie had a good day... a few meltdowns... but overall did well and succeeded to ignore a new child who was chiding her about not doing things well. She seemed in a good mood, and we had a good drive home.
We had an hour downtime before we were to leave for dinner out... and a few minutes before we were to leave, Mark asked Katie to put her shoes on. She said her tummy hurt and she couldn't and told us to go upstairs and put her socks and shoes on for her. Mark and I looked at each other and knew there was no time better than the present to begin our new parenting instructions.
Very monotone Mark told her that we understood she didn't feel good but she needed to get her shoes on. She began to explode and cry and whine... but we very kindly held our ground and again (broken-record style) told her that she could put her shoes on upstairs or in the car... but she needed to get in the car. After 15 minutes of crying, "You don't love me's" and "You don't care about me's"... yelling, whining and resistance, she slowly made her way downstairs... shoes in hand... and after a few minutes of crying that she couldn't get in the car... she THREW her shoes in the car and got in.
On the ride to the restaurant we experienced her worst emotional blow-up ever.... I put some quiet music on and she SCREAMED at the top of her lungs... "TURN THAT MUSIC OFF!!!" I very monotonely said, "No.. this is my turn to pic the song and I want to hear it". She became even more enraged, demanding that I turn it off. Mark and I remained very monotone... ignoring her volume and theatrics, and told her no. In addition to her loud crying and hysteria she began stomping her feet. I told her that she needed to calm herself down using the techniques that the ABC Clinic had taught her... but she refused. (Did I tell you I had my earplugs in all this time?? That was another suggestion to me from the team. They worked GREAT!)
When we got to the restaurant parking lot, Mark told me to go in and meet Bea and get a table... and he and Katie would be along once she was able to calm herself. Mark drove Katie to a far-away stall (so as not to draw attention by the noise) and sat in the car while Katie began hitting the window with her fists and flopping her body all over the back seat. He ignored it all (yay Mark!!)... and after a while Katie demanded that Mark get out of the car and leave her alone. He kindly refused saying that he wanted to stay in his seat. But once she asked, "PLEASE leave me alone".. Mark stepped out to the side of the car and quietly prayed for her as she continued her VERY LOUD hysteria. A few moments later, she cried out, "Daddy, I need your help!!!" Mark opened the door and asked very calmly... "How can I help you?"... at which point Katie jumped into his arms, threw her arms around his neck, and IMMEDIATELY STOPPED CRYING. He asked her if she was settled and she said "Yes". A few seconds later as they were waling towards the restaurant, Katie said very matter of factly, "Now that was stupid. A 9 year old girl shouldn't act like that."
The rest of the evening at the restaurant she was the "perfect child"... happy, compliant... and very respectful and content. Go figure...
The three of them went on to Walmart after dinner to get some groceries, but me... I went home immediately after and went directly to bed.
I have to tell you... Mark and I felt so "empowered" with our new parenting approach. We won the battle, and our emotions weren't strung out afterwards. And we could see that Katie could 'right' herself given the Independence. THANK YOU Jesus... and thank you ABC Clinic.
Chow 4 Now,
Susan
Wednesday, February 25, 2009
Day Fourteen: "Mom, I Think I'm Going to Faint!!"
Katie had a hard night last night. From dinner to bedtime she was angry... whiny... and very unsettled. She hated dinner. She hated taking a bath. She was mad that I wouldn't dry her off, put her clothes on her and make another dinner for her. She was ticked because she had to brush her teeth. She said she had "crying" inside her that couldn't get out... but eventually did with much slamming, banging, hitting, throwing and excessive anger. By the time she got into bed, she was out of control, resistant to ANY help or advice... and hyperventilating. We left her to herself to work it out until she began shouting, "Help, I need HELP!" Mark and I went into her room, sat on her bed, and as he prayed for her, I rubbed her back and tried to help her gain control. It took several minutes until she could calm down... and in less that two minutes after stopping her crying, she was fast asleep.
Mark and I left the room feeling like we had just been through a war... one we have fought many many times before... but one we have never gotten used to. These events are truly exhausting to us... and make an otherwise restful evening turn into an endless season of tension, indigestion and struggle. We are on day three of the Lithium and understand that it will take at least two weeks to see the benefit of the medication. What can I say... it's going to be a LOOOOONG two weeks for us.
On a positive note, Katie slept all night and woke up very happy and compliant. When I spoke with her about the previous evening, she said that she was angry at me because she didn't like nachos (our dinner)... and that she got herself out of control and couldn't stop it. She admitted that she says and does dumb things... and makes very bad choices when she gets that angry, and she apologized to me for getting out of control. I told her that all was forgiven and that I understood... and that God was going to use the ABC Program at UCLA to help us find answers to helping her maintain control of herself in the future. The drive to the hospital was another good one... and after kissing her goodbye I headed downstairs to watch an incredible teaching video called, "F.A.T. City: Children with Learning Disabilities".... (Frustration, Anxiety and Tension). It was an amazing video... very insightful to Katie's challenges... one I need to watch over and over again.
I received a call from the Radiation Department this morning telling me that Katie will have her Brain MRI done March 26th at 9:00 am. They will have to start an IV in her arm in order to sedate her for the test, and I know that she will most likely try and resist having that done and will surely be frightened... so I am praying now for God's strength to help her before hand. He can break through that fear of hers and help her be courageous and strong.
Jesus is LORD today... not just our Savior, but our LORD. He calls the shots and makes a way where there seems to be no way. He is also our eternal encourager... and today I could use all the encouragement I can get. I'd love to sit here and tell you that I am confident and strong and trusting God that all will be okay... but today I am weary and tired... and I am feeling insecure and concerned. I would love to run and hide in a cave and sleep for the next millennium... or just sprout wings and fly up to heaven right now. Is that okay to admit??? Well, as humbling it is to say, for today, it's true. Despite most days of amazing strength and hopeful outlook, I am not very strong today. Nevertheless, I keep pedaling ahead... and tomorrow will be another day and I more than likely will be back on top of things.
But for today... I'm going to spend that day walking around town... in and out of local stores... not buying anything mind you, but touching as many things as I can touch... taking in all the various smells and scenes... and give God time this afternoon to build me up again. There is nothing that He can't handle, so I'm going to let Him bear my burden while I get out and take a walk. Hmmmm.... it looks like it wants to rain outside.... no bother... the shower will do me good... and short hair dries fast anyway.
****
When I went to pick Katie up today and get my day-end report, I was surprised to see a LARGE KEYBOARD waiting for me. They asked me to take it out to my car before any other kids saw it... and I slipped out and hid it in the back of the car. When I returned to pick Katie up, I kept it a secret from her until we arrived home. The report I got from the psychologist was that Katie had a very hard day... and had SEVERAL emotional meltdowns throughout the day. Mark, Bea and I will have our meeting with the Psychiatrist tomorrow morning to discuss what we can do to help Katie through these hard times until her new med takes effect and helps her gain self control over her emotions.
Once we got home, I told Katie I had a surprise for her... and when I opened the trunk of the car and she saw the keyboard, she turned kinda pale and threw her hands to the side of her face and shouted, "OH MOM!!! I THINK I'M GOING TO FAINT!! OH MY GOODNESS!! I HAVE ALWAYS WANTED A KEYBOARD. OH MY GOODNESS.... I'M GOING TO FAINT!!!" (No drama there....)
So here I sit listening to "Twinkle Twinkle Little Star" played for the thousandth time in the last 20 minutes. A few times she has gotten angry that she can't get it perfectly and has started to bang on the keys, at which point I told her she would be grounded from it if I catch her banging on it in anger. She understood. Let's hope she remembers.
MM.. MM... mm...mm...mmm.mmm.mmmmmmm...... Uh oh... I think that song is stuck in my head now. Good grief!!
Chow 4 Now,
Susan
Mark and I left the room feeling like we had just been through a war... one we have fought many many times before... but one we have never gotten used to. These events are truly exhausting to us... and make an otherwise restful evening turn into an endless season of tension, indigestion and struggle. We are on day three of the Lithium and understand that it will take at least two weeks to see the benefit of the medication. What can I say... it's going to be a LOOOOONG two weeks for us.
On a positive note, Katie slept all night and woke up very happy and compliant. When I spoke with her about the previous evening, she said that she was angry at me because she didn't like nachos (our dinner)... and that she got herself out of control and couldn't stop it. She admitted that she says and does dumb things... and makes very bad choices when she gets that angry, and she apologized to me for getting out of control. I told her that all was forgiven and that I understood... and that God was going to use the ABC Program at UCLA to help us find answers to helping her maintain control of herself in the future. The drive to the hospital was another good one... and after kissing her goodbye I headed downstairs to watch an incredible teaching video called, "F.A.T. City: Children with Learning Disabilities".... (Frustration, Anxiety and Tension). It was an amazing video... very insightful to Katie's challenges... one I need to watch over and over again.
I received a call from the Radiation Department this morning telling me that Katie will have her Brain MRI done March 26th at 9:00 am. They will have to start an IV in her arm in order to sedate her for the test, and I know that she will most likely try and resist having that done and will surely be frightened... so I am praying now for God's strength to help her before hand. He can break through that fear of hers and help her be courageous and strong.
Jesus is LORD today... not just our Savior, but our LORD. He calls the shots and makes a way where there seems to be no way. He is also our eternal encourager... and today I could use all the encouragement I can get. I'd love to sit here and tell you that I am confident and strong and trusting God that all will be okay... but today I am weary and tired... and I am feeling insecure and concerned. I would love to run and hide in a cave and sleep for the next millennium... or just sprout wings and fly up to heaven right now. Is that okay to admit??? Well, as humbling it is to say, for today, it's true. Despite most days of amazing strength and hopeful outlook, I am not very strong today. Nevertheless, I keep pedaling ahead... and tomorrow will be another day and I more than likely will be back on top of things.
But for today... I'm going to spend that day walking around town... in and out of local stores... not buying anything mind you, but touching as many things as I can touch... taking in all the various smells and scenes... and give God time this afternoon to build me up again. There is nothing that He can't handle, so I'm going to let Him bear my burden while I get out and take a walk. Hmmmm.... it looks like it wants to rain outside.... no bother... the shower will do me good... and short hair dries fast anyway.
****
When I went to pick Katie up today and get my day-end report, I was surprised to see a LARGE KEYBOARD waiting for me. They asked me to take it out to my car before any other kids saw it... and I slipped out and hid it in the back of the car. When I returned to pick Katie up, I kept it a secret from her until we arrived home. The report I got from the psychologist was that Katie had a very hard day... and had SEVERAL emotional meltdowns throughout the day. Mark, Bea and I will have our meeting with the Psychiatrist tomorrow morning to discuss what we can do to help Katie through these hard times until her new med takes effect and helps her gain self control over her emotions.
Once we got home, I told Katie I had a surprise for her... and when I opened the trunk of the car and she saw the keyboard, she turned kinda pale and threw her hands to the side of her face and shouted, "OH MOM!!! I THINK I'M GOING TO FAINT!! OH MY GOODNESS!! I HAVE ALWAYS WANTED A KEYBOARD. OH MY GOODNESS.... I'M GOING TO FAINT!!!" (No drama there....)
So here I sit listening to "Twinkle Twinkle Little Star" played for the thousandth time in the last 20 minutes. A few times she has gotten angry that she can't get it perfectly and has started to bang on the keys, at which point I told her she would be grounded from it if I catch her banging on it in anger. She understood. Let's hope she remembers.
MM.. MM... mm...mm...mmm.mmm.mmmmmmm...... Uh oh... I think that song is stuck in my head now. Good grief!!
Chow 4 Now,
Susan
Tuesday, February 24, 2009
Day Thirteen: Sleeping Beauty
Last night was the first night in many many days that Katie fell asleep at 7:45 and slept all the way through the night. Even better than that, she awoke very cheerful and compliant... and we had a sail-on-the-freeway drive to UCLA and were here a few minutes early.
I, on the other hand, am going on my third month of about 3 hours of sleep per night. For whatever reason, I have been waking up several times every night... and by the time 3AM rolls around, I am up and awake for the rest of the morning and unable to get back to sleep. I have no idea why this is happening... but even the sleeping pills the doctor had given me were not keeping me asleep... so I quit taking them. Why bother? But... in my many waking hours, it was nice to roll over and watch Katie sleeping soundly and looking content. She really was a sleeping beauty to me last night.
This morning on the drive in, I very pointedly made sure Katie TOOK and SWALLOWED her medicine before we got to the clinic (chuckle). She agreed with me that not-taking her pills yesterday morning was a dumb thing to do... and she certainly won't make that mistake again.
They had another graduation today in the clinic... her friend Harriet graduated... with all the pomp and circumstance... and a feast of bagels/cream cheese, fresh cut up fruit, yogurt and juice. Katie seemed happy during the ceremony and while eating, but as I was leaving she began to cry and told me that she didn't feel well and was tired. She was unusually clingy to me... and after many hugs and kisses .... and reassuring her that I would just be downstairs and wouldn't leave without her, I literally TORE myself away and left to the family-room downstairs... my daily abode while here.
When I got downstairs, I received a call from the social worker who informed me that Katie's elementary school psychologist (the school near home) arrived at the clinic and was going to run an IEP assessment on Katie for her return back to school (whenever that will happen). We want to get the IEP (Individualized Education Plan) in place before her return... so everything will be set when that time comes. I went up and met with the psychologist at 10:00 am after the assessment was done. She said that Katie did a good job with only two meltdowns. She then handed me some forms to fill out and give back to her on Thursday when she returns to do the second round of testing.
The end of the day report was fair... Katie had a few meltdowns throughout the day, but she regained herself shortly after each one, so that shows some improvement. The drive home was good... very light traffic, and daddy was home a few minutes after we arrived. His meeting went well.
Unfortunately, Katie had a challenging evening... very angry and whiney. She didn't like her dinner and was eventually given an ultimatum to quiet down or leave the table and go to her room until she could pull herself together. She was able to contain herself for the rest of the meal, but lost it again during and after her bath... slamming, throwing and hitting things. Then after I got her settled into bed, she continued to cry... and cry.... and cry.... eventually into hysteria... complete with hyperventillation and all. She started shouting out for HELP... and both Mark and I went in to her room and sat on her bed and prayed for and comforted her as she continued to emotionally run-amuck for about 5 full minutes. Once she was able to regain her composure and settle, she laid back down and was asleep within 2 minutes. I can't begin to tell you how exhausting it is on our hearts to have to witness our child in such distress and be totally helpless.
Nevertheless, it is 8:29 PM right now and all is quiet. I need to run downstairs and ready my lunch for tomorrow... as well as Katie's and my breakfast for the car ride to UCLA in the morning. After that, it's quickly to bed to see if I can get in more than 3 hours of sleep till morning... so I can do it all over again.
What a ride!
Chow 4 Now,
Susan
I, on the other hand, am going on my third month of about 3 hours of sleep per night. For whatever reason, I have been waking up several times every night... and by the time 3AM rolls around, I am up and awake for the rest of the morning and unable to get back to sleep. I have no idea why this is happening... but even the sleeping pills the doctor had given me were not keeping me asleep... so I quit taking them. Why bother? But... in my many waking hours, it was nice to roll over and watch Katie sleeping soundly and looking content. She really was a sleeping beauty to me last night.
This morning on the drive in, I very pointedly made sure Katie TOOK and SWALLOWED her medicine before we got to the clinic (chuckle). She agreed with me that not-taking her pills yesterday morning was a dumb thing to do... and she certainly won't make that mistake again.
They had another graduation today in the clinic... her friend Harriet graduated... with all the pomp and circumstance... and a feast of bagels/cream cheese, fresh cut up fruit, yogurt and juice. Katie seemed happy during the ceremony and while eating, but as I was leaving she began to cry and told me that she didn't feel well and was tired. She was unusually clingy to me... and after many hugs and kisses .... and reassuring her that I would just be downstairs and wouldn't leave without her, I literally TORE myself away and left to the family-room downstairs... my daily abode while here.
When I got downstairs, I received a call from the social worker who informed me that Katie's elementary school psychologist (the school near home) arrived at the clinic and was going to run an IEP assessment on Katie for her return back to school (whenever that will happen). We want to get the IEP (Individualized Education Plan) in place before her return... so everything will be set when that time comes. I went up and met with the psychologist at 10:00 am after the assessment was done. She said that Katie did a good job with only two meltdowns. She then handed me some forms to fill out and give back to her on Thursday when she returns to do the second round of testing.
The end of the day report was fair... Katie had a few meltdowns throughout the day, but she regained herself shortly after each one, so that shows some improvement. The drive home was good... very light traffic, and daddy was home a few minutes after we arrived. His meeting went well.
Unfortunately, Katie had a challenging evening... very angry and whiney. She didn't like her dinner and was eventually given an ultimatum to quiet down or leave the table and go to her room until she could pull herself together. She was able to contain herself for the rest of the meal, but lost it again during and after her bath... slamming, throwing and hitting things. Then after I got her settled into bed, she continued to cry... and cry.... and cry.... eventually into hysteria... complete with hyperventillation and all. She started shouting out for HELP... and both Mark and I went in to her room and sat on her bed and prayed for and comforted her as she continued to emotionally run-amuck for about 5 full minutes. Once she was able to regain her composure and settle, she laid back down and was asleep within 2 minutes. I can't begin to tell you how exhausting it is on our hearts to have to witness our child in such distress and be totally helpless.
Nevertheless, it is 8:29 PM right now and all is quiet. I need to run downstairs and ready my lunch for tomorrow... as well as Katie's and my breakfast for the car ride to UCLA in the morning. After that, it's quickly to bed to see if I can get in more than 3 hours of sleep till morning... so I can do it all over again.
What a ride!
Chow 4 Now,
Susan
Monday, February 23, 2009
Day Twelve: We Begin our Third Week
I hope you had a good weekend... I sure did. My sister and brother-in-law came in from the frigid Minnesota to visit my mom and dad for a week, so I drove to their home in Monrovia, CA and spent the weekend catching up on the last three years of their lives. I cannot begin to tell you what a joy it was to have had such a focused, one-on-one time with them. The weekend absolutely flew by... the days felt like just hours.
Unfortunately for Mark, Bea, and Katie, it was a long hard weekend. Since we have weened Katie off of the Abilify, her emotional stability and psycho-somatic pains have all gone downhill fast and are at an all-time low. She spent much of the weekend angry, sassy, mean-spirited, and full of various body pains and tics. Even this morning after an entire nights sleep, she woke up saying she felt sick and was having a hard time breathing... and was very grumpy and whiny... but by the time she was in the car and eating breakfast, she was right-as-rain again... and we had a good drive.
Knowing we need to do something to help her, Mark and I agreed to see if we can start the Lithium medication this week... and I spoke to the medical staff this morning when I arrived. They have taken note of Katie's weekend and are going to see if they can speak with the neuro-psychiatrist today.
As an interesting note... an additional child in the program was discharged over the weekend, and two other children had to be hospitalized (they were harmful to either themselves or others and were put inpatient)... so Katie is one of only two children in the program today... so she is going to have an enormous amount of one-on-one scrutiny today.
Well, it is 8:38 AM.... the day is hardly begun, and I am already out of the shoot like a shot. I have MANY appointments to set up for Katie today... an MRI, an Ultrasound, a Sleep Deprived EEG... so I'd better get busy and start making my calls.
*****************
Well, I made my calls... but couldn't schedule anything till I get official authorizations faxed to the correct departments running the tests... so I've got a delay until tomorrow. Oh well, I'm still VERY THANKFUL for insurance in this season.
Katie had a good day... but was extremely hyperactive... every specialist noted it on their charting for the day. It wasn't till we got in the car to drive home that Katie admitted that she didn't take her medicine this morning (even though I gave it to her and told her to take it)... so that explained her hyperactivity. Ugh... I MADE her take it in front of me before we got on the road. Me thinx I am going to stand and WATCH her swallow it before we leave the house tomorrow. (the lil' stinker).
On the way home I picked up the new Lithium medicine and will start that this evening. She will be starting out on a tiny dose... once at breakfast and again before bed. She still doesn't know about the upcoming blood tests which will be every Monday morning for the next few weeks. We decided not to tell her till we know if she tolerates it well... after all, if she doesn't, then we will need to find another medication in it's place... so no use scaring her about blood tests that may or may not be.
One happy note... the music teacher at UCLA contacted me today and said that Katie is very good at music and loves it (well, now that's no surprise to us). She said that she has a fund that she has been holding for such a time as this... when she finds a child so enthusiastic about music... she believes they will excel at an instrument. She asked if she could buy Katie an electric keyboard... it would be hers to keep... and would cost us nothing. I was speechless. She's not talking about a kids toy... this is a REAL keyboard. So.... it looks like we will be acquiring a keyboard in the next few days. Wow... just another fine example of God supplying more than our needs...
Well, Mark has gone overnight to a meeting and won't be home until tomorrow, so tonight it's Katie and I. I have agreed to let Katie sleep in bed with me... (what have I gotten myself into??)... so it should be a fun evening... well... at least an eventful one for sure.
Chow for now....
Susan
Unfortunately for Mark, Bea, and Katie, it was a long hard weekend. Since we have weened Katie off of the Abilify, her emotional stability and psycho-somatic pains have all gone downhill fast and are at an all-time low. She spent much of the weekend angry, sassy, mean-spirited, and full of various body pains and tics. Even this morning after an entire nights sleep, she woke up saying she felt sick and was having a hard time breathing... and was very grumpy and whiny... but by the time she was in the car and eating breakfast, she was right-as-rain again... and we had a good drive.
Knowing we need to do something to help her, Mark and I agreed to see if we can start the Lithium medication this week... and I spoke to the medical staff this morning when I arrived. They have taken note of Katie's weekend and are going to see if they can speak with the neuro-psychiatrist today.
As an interesting note... an additional child in the program was discharged over the weekend, and two other children had to be hospitalized (they were harmful to either themselves or others and were put inpatient)... so Katie is one of only two children in the program today... so she is going to have an enormous amount of one-on-one scrutiny today.
Well, it is 8:38 AM.... the day is hardly begun, and I am already out of the shoot like a shot. I have MANY appointments to set up for Katie today... an MRI, an Ultrasound, a Sleep Deprived EEG... so I'd better get busy and start making my calls.
*****************
Well, I made my calls... but couldn't schedule anything till I get official authorizations faxed to the correct departments running the tests... so I've got a delay until tomorrow. Oh well, I'm still VERY THANKFUL for insurance in this season.
Katie had a good day... but was extremely hyperactive... every specialist noted it on their charting for the day. It wasn't till we got in the car to drive home that Katie admitted that she didn't take her medicine this morning (even though I gave it to her and told her to take it)... so that explained her hyperactivity. Ugh... I MADE her take it in front of me before we got on the road. Me thinx I am going to stand and WATCH her swallow it before we leave the house tomorrow. (the lil' stinker).
On the way home I picked up the new Lithium medicine and will start that this evening. She will be starting out on a tiny dose... once at breakfast and again before bed. She still doesn't know about the upcoming blood tests which will be every Monday morning for the next few weeks. We decided not to tell her till we know if she tolerates it well... after all, if she doesn't, then we will need to find another medication in it's place... so no use scaring her about blood tests that may or may not be.
One happy note... the music teacher at UCLA contacted me today and said that Katie is very good at music and loves it (well, now that's no surprise to us). She said that she has a fund that she has been holding for such a time as this... when she finds a child so enthusiastic about music... she believes they will excel at an instrument. She asked if she could buy Katie an electric keyboard... it would be hers to keep... and would cost us nothing. I was speechless. She's not talking about a kids toy... this is a REAL keyboard. So.... it looks like we will be acquiring a keyboard in the next few days. Wow... just another fine example of God supplying more than our needs...
Well, Mark has gone overnight to a meeting and won't be home until tomorrow, so tonight it's Katie and I. I have agreed to let Katie sleep in bed with me... (what have I gotten myself into??)... so it should be a fun evening... well... at least an eventful one for sure.
Chow for now....
Susan
Friday, February 20, 2009
Day 11: Sleepless... but not in Seattle
Katie has another challenging night with anger, tears, and her yelling, nodding and hopping tics... and wasn't able to get to sleep till around 10:00 PM once again. So unsettled. I can tell she is trying her best... and I am hearing Katie express more and more some really good understanding about herself and challenges... but she also thinks it's hopeless and that she will never be able to change. But we are only in the second week... we have several more to go... and I am confident that God is going to strengthen her from the inside out as she applies the new tools she will acquire here at UCLA. She has a great rapport with her psychologist, Miss Melody... and Mark and I are very confident in her knowledge and ability to empower Katie. It was so special to hear Miss Melody report to me last night that although Katie said she feels like nobody likes her sometimes, she says, "But God loves me and He always will. That will never change."
That's right, Katie-girl... He does love you... enormously.
So do I.
So does daddy.
And so do a LOT of other people who are praying for you right now.
Once again, a song is sounding in my hear...
"God will make a way, where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way
He WILL make a way."
This morning two children in the program "graduated" and will be leaving the clinic. They have a very traditional graduation party... with a red carpet the kids walk down... wearing a graduate hat and tassel... getting a diploma... lots of cheering and photos... cake and punch... a big gift from the clinic staff... and friends and extended family around. Katie sat at the side with a horrible stomach and chest ache... almost in tears... she was SO SAD to see her friends graduate. Sh said she will miss them... and the pains in her body were the result of her loss. It was such a tender ceremony... there were tears all around... and when it was over, the two graduates got to sign the under side of the red carpet. When they flipped the red runner over, it was ABSOLUTELY COVERED with children's signatures from the past. ALL THOSE KIDS. Where are they now? Are they okay? Are they doing well? What I saw represented under that runner moved me deeply.
I don't know when it will be, but when Katie finally graduates from the program, I would love to invite some of you to come if you can. If you are interested, let me know and I'll see if I can get clearance with the staff here. I can't begin to tell you how proud I will be on that day. But then... I am proud of my girl even now, despite her current challenges.
This afternoon we had our family counseling session at 11 AM. Mark, Bea and I spoke with Katie's psychologist and we had a good time of talking with her. We did, however, get some sad news. The psychologist here at UCLA "rotate" residency every so often, and Miss Melody will be rotating away next week... and we will acquire a new psychologist to work with. It's hard to have established a good relationship with a counselor and then have to shift gears and get comfortable with a new one... but God knows... He is the great Chess player, and He moves His pawns around as He chooses. Certainly Miss Melody is no exception... and we believe that the next psychologist will effectively take us through the rest of our journey here. The difficulty I am struggling with this is... I know as Katie's momma, that she doesn't do transition and changes well... and she has already begun to open up to Miss Melody the deep things of her heart. How is she going to do through this change...?
Katie hasn't been told about Miss Melody's leaving yet... and won't be until late next week. That will be Miss Melody's job. So we will need to hold this quietly in our hearts until she is told.
Once again.... I need to cast my fears and concerns on Jesus who bears my worries for me. He is in control of Katie's time here... He desperately LOVES her and knows what's best for HER... and I need to rest in that... and not be afraid. Fear wastes good time.
Have I told you lately how thankful we are for those of you who are praying for us today?? It means more to us that you'll ever know.
Please forgive the lengthiness of my blogging... but I am trying to get as much memory and information in these writings as I can... my intent is to one day print these pages out... bind them together in a small book... and have it available to Katie when she gets older... so she can see how very loved she is and how much she has been able to overcome with God's help and the many prayers and encouragements of family and friends. Feel free to leave your comments to Katie... I assure you, they will be remembered for years to come.
Gratefully yours,
Susan
That's right, Katie-girl... He does love you... enormously.
So do I.
So does daddy.
And so do a LOT of other people who are praying for you right now.
Once again, a song is sounding in my hear...
"God will make a way, where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way
He WILL make a way."
This morning two children in the program "graduated" and will be leaving the clinic. They have a very traditional graduation party... with a red carpet the kids walk down... wearing a graduate hat and tassel... getting a diploma... lots of cheering and photos... cake and punch... a big gift from the clinic staff... and friends and extended family around. Katie sat at the side with a horrible stomach and chest ache... almost in tears... she was SO SAD to see her friends graduate. Sh said she will miss them... and the pains in her body were the result of her loss. It was such a tender ceremony... there were tears all around... and when it was over, the two graduates got to sign the under side of the red carpet. When they flipped the red runner over, it was ABSOLUTELY COVERED with children's signatures from the past. ALL THOSE KIDS. Where are they now? Are they okay? Are they doing well? What I saw represented under that runner moved me deeply.
I don't know when it will be, but when Katie finally graduates from the program, I would love to invite some of you to come if you can. If you are interested, let me know and I'll see if I can get clearance with the staff here. I can't begin to tell you how proud I will be on that day. But then... I am proud of my girl even now, despite her current challenges.
This afternoon we had our family counseling session at 11 AM. Mark, Bea and I spoke with Katie's psychologist and we had a good time of talking with her. We did, however, get some sad news. The psychologist here at UCLA "rotate" residency every so often, and Miss Melody will be rotating away next week... and we will acquire a new psychologist to work with. It's hard to have established a good relationship with a counselor and then have to shift gears and get comfortable with a new one... but God knows... He is the great Chess player, and He moves His pawns around as He chooses. Certainly Miss Melody is no exception... and we believe that the next psychologist will effectively take us through the rest of our journey here. The difficulty I am struggling with this is... I know as Katie's momma, that she doesn't do transition and changes well... and she has already begun to open up to Miss Melody the deep things of her heart. How is she going to do through this change...?
Katie hasn't been told about Miss Melody's leaving yet... and won't be until late next week. That will be Miss Melody's job. So we will need to hold this quietly in our hearts until she is told.
Once again.... I need to cast my fears and concerns on Jesus who bears my worries for me. He is in control of Katie's time here... He desperately LOVES her and knows what's best for HER... and I need to rest in that... and not be afraid. Fear wastes good time.
Have I told you lately how thankful we are for those of you who are praying for us today?? It means more to us that you'll ever know.
Please forgive the lengthiness of my blogging... but I am trying to get as much memory and information in these writings as I can... my intent is to one day print these pages out... bind them together in a small book... and have it available to Katie when she gets older... so she can see how very loved she is and how much she has been able to overcome with God's help and the many prayers and encouragements of family and friends. Feel free to leave your comments to Katie... I assure you, they will be remembered for years to come.
Gratefully yours,
Susan
Thursday, February 19, 2009
Day Ten: Oh What a Night
Today was a pretty good day for Katie at the clinic outside of a few run-in's with two challenging other kids in the program. Last night however, wasn't so....
When Katie got to Wednesday night kid's night at church, her teacher was unfortunately 20 minutes late in getting there, and Katie had to wait with aunt Bea till she got there. Katie had been dancing around and doing well during the wait, but as soon as her teacher arrived in the room, Katie began to sulk, turn her back to the teacher, and cover her head with her coat. Despite her teachers continual apology for being late, Katie continued to not talk for several more minutes, and after a while, warmed up and joined the group.
That evening when Bea and Katie arrived in the driveway, Katie didn't want to get out of the car because she was afraid of the dark (highly unusual for her... especially since there was a lot of light outside.) Bea escorted Katie to the house, and as soon as she walked through the door, she flew into a rage and began to slug the guestroom bed with her fists. She shouted that she was angry... she didn't know at what.... but she said she had to hit the bed cause she was just SO MAD!! I saw no harm in her getting her frustrations out in a safe pelting of the bed, so I stood next to her and told her to go for it. She pounded the daylights out of the bed for the next full 15 minutes till she was exhausted. When I asked her if she felt any better, she said she was SO tired... but was still very angry. I helped her get her PJ's on... get a quick bite to eat... and as she was going upstairs to brush her teeth, she began to nod her head, jerk her shoulders, flutter her eyes, and begin to shout/grunt loudly. I recognized it as Tourette tics that have occasionally been manifesting over the past two weeks... but at that moment they came on STRONG. She became notably shaken and called out, "Mom, I'm making those noises again!!!" I tried to downplay the fear and tell her that they were just noises, but by the time she get to the top of the stairs, they were going full boar. She cried out loud "DADDY, I'M SCARED!!" and then utterly flew downstairs to me and threw her arms around my neck as she grunted/yelled, nodded her head furiously and hopped up and down. "MOMMY, I'm SCARED!!" I gathered my insides together and calmly told her that they were just noises, they wouldn't hurt her... and we were fine with them... and just like all the other tics she has experienced, these would come and then go away too. It took many minutes for her to feel safe again... and was afraid to go upstairs by herself. I tucked her into bed... kissed her goodnight, and then went downstairs to fill; out my evening report on her.
As I was writing about the going's-on that evening, Bea and I sat and talked about everything that evening... and I mentioned to Bea that I had a feeling that Katie wasn't angry when she was beating the bed, but that she was afraid because she could feel the "yelling tic" coming on... and she stifled it at church, but by the time she got home she could feel the control slipping... and yelling scared her. I think it was fear, not anger that caused her to beat the bed.
I asked Bea to go upstairs and check to see if Katie was asleep so I could document it, but when she got there, Katie was missing!! When we called for her, we found her downstairs in Bea's bed (she is SO stealth). She walked into the kitchen and said, "Mom... I heard what you were saying about me to Bea... and you know what? You're right... I was afraid. It scared me. I'm such a freak".
My poor pumpkin-sweetie... I would do ANYTHING to take that fear away from you and help you understand that you are NOT a freak... and God knows I have tried to do that. But it's in God's hands now... He is going to have to help you see that truth... and perhaps the clinic will be His tool to accomplish that.
Katie wasn't able to fall asleep until a few hours later... she was just so unsettled. This has been going on for a couple of weeks now. We most certainly need to talk with the doctors about this.
This morning we were again up at 5:45 and I was expecting her to be a zombie with such little sleep, but she woke up refreshed and ready for her day... as if none of the previous evening challenges ever happened. I on the other hand was exhausted... I think my hurting heart has something to do with that. I am learning to "Cast my cares" much more than just daily... often minute by minute. It is becoming a way of life for me. Ha! It's about time, aye?
Continually casting,
Susan
When Katie got to Wednesday night kid's night at church, her teacher was unfortunately 20 minutes late in getting there, and Katie had to wait with aunt Bea till she got there. Katie had been dancing around and doing well during the wait, but as soon as her teacher arrived in the room, Katie began to sulk, turn her back to the teacher, and cover her head with her coat. Despite her teachers continual apology for being late, Katie continued to not talk for several more minutes, and after a while, warmed up and joined the group.
That evening when Bea and Katie arrived in the driveway, Katie didn't want to get out of the car because she was afraid of the dark (highly unusual for her... especially since there was a lot of light outside.) Bea escorted Katie to the house, and as soon as she walked through the door, she flew into a rage and began to slug the guestroom bed with her fists. She shouted that she was angry... she didn't know at what.... but she said she had to hit the bed cause she was just SO MAD!! I saw no harm in her getting her frustrations out in a safe pelting of the bed, so I stood next to her and told her to go for it. She pounded the daylights out of the bed for the next full 15 minutes till she was exhausted. When I asked her if she felt any better, she said she was SO tired... but was still very angry. I helped her get her PJ's on... get a quick bite to eat... and as she was going upstairs to brush her teeth, she began to nod her head, jerk her shoulders, flutter her eyes, and begin to shout/grunt loudly. I recognized it as Tourette tics that have occasionally been manifesting over the past two weeks... but at that moment they came on STRONG. She became notably shaken and called out, "Mom, I'm making those noises again!!!" I tried to downplay the fear and tell her that they were just noises, but by the time she get to the top of the stairs, they were going full boar. She cried out loud "DADDY, I'M SCARED!!" and then utterly flew downstairs to me and threw her arms around my neck as she grunted/yelled, nodded her head furiously and hopped up and down. "MOMMY, I'm SCARED!!" I gathered my insides together and calmly told her that they were just noises, they wouldn't hurt her... and we were fine with them... and just like all the other tics she has experienced, these would come and then go away too. It took many minutes for her to feel safe again... and was afraid to go upstairs by herself. I tucked her into bed... kissed her goodnight, and then went downstairs to fill; out my evening report on her.
As I was writing about the going's-on that evening, Bea and I sat and talked about everything that evening... and I mentioned to Bea that I had a feeling that Katie wasn't angry when she was beating the bed, but that she was afraid because she could feel the "yelling tic" coming on... and she stifled it at church, but by the time she got home she could feel the control slipping... and yelling scared her. I think it was fear, not anger that caused her to beat the bed.
I asked Bea to go upstairs and check to see if Katie was asleep so I could document it, but when she got there, Katie was missing!! When we called for her, we found her downstairs in Bea's bed (she is SO stealth). She walked into the kitchen and said, "Mom... I heard what you were saying about me to Bea... and you know what? You're right... I was afraid. It scared me. I'm such a freak".
My poor pumpkin-sweetie... I would do ANYTHING to take that fear away from you and help you understand that you are NOT a freak... and God knows I have tried to do that. But it's in God's hands now... He is going to have to help you see that truth... and perhaps the clinic will be His tool to accomplish that.
Katie wasn't able to fall asleep until a few hours later... she was just so unsettled. This has been going on for a couple of weeks now. We most certainly need to talk with the doctors about this.
This morning we were again up at 5:45 and I was expecting her to be a zombie with such little sleep, but she woke up refreshed and ready for her day... as if none of the previous evening challenges ever happened. I on the other hand was exhausted... I think my hurting heart has something to do with that. I am learning to "Cast my cares" much more than just daily... often minute by minute. It is becoming a way of life for me. Ha! It's about time, aye?
Continually casting,
Susan
Wednesday, February 18, 2009
Day 9: Relatively Quiet
Today was a relatively quiet day for Katie and I (Mark) at the ABC Clinic.
Katie was awakened, dressed and headed for the car quickly and without incident. Our door-to-parking lot drive was less than an hour despite a surprising bank of fog in Santa Clarita. While Katie was in 'class,' I took a walking tour around the UCLA campus, spending time at the UCLA athletic hall of fame. Most impressive were the 104 national championship trophies on display. That's more thanany university in America and certainly more than the small college located across town whose coach acted like a child when his star quarterback announced the decision to go pro instead of returning to school. I also walked onto the UCLA football practice field and watched a punter and kicker booting the ball around. I even stood on the "A" in the end zone. Susan accused me of drooling. I denied it.
I spent the remainder of the day reading, writing, snoozing and eating, waiting until 2:45 when Katie was ready for pick up. According the to daily log completed by the staff, she had a good day. Her only challenge was with peers acting in ways Katie did not approve of. She excelled in her school work. Go figure...
The drive home was easy, too.
Susan and Bea are on duty tomorrow. I have several appointments in the am.
Mark
Katie was awakened, dressed and headed for the car quickly and without incident. Our door-to-parking lot drive was less than an hour despite a surprising bank of fog in Santa Clarita. While Katie was in 'class,' I took a walking tour around the UCLA campus, spending time at the UCLA athletic hall of fame. Most impressive were the 104 national championship trophies on display. That's more than
I spent the remainder of the day reading, writing, snoozing and eating, waiting until 2:45 when Katie was ready for pick up. According the to daily log completed by the staff, she had a good day. Her only challenge was with peers acting in ways Katie did not approve of. She excelled in her school work. Go figure...
The drive home was easy, too.
Susan and Bea are on duty tomorrow. I have several appointments in the am.
Mark
Tuesday, February 17, 2009
Day Eight: Finally Weaned
Over the weekend Katie did two consecutive sleepovers at Aunt Bea's house and was weened off the Abilify. Meanwhile, I slept and slept and slept... and practically stayed in my pajamas when awake... just in case I wasn't done sleeping yet.
Katie got to go to a "High School Musical" play at a nearby theater... and when she came home, she was so excited to show me the autographs she had gotten. I had to grin remembering the many autographs I had gotten as a kid. What did I ever do with those things?? Such a fun, silly fad.
Bea said Katie had a pretty good weekend with only a couple disturbing incidents. One night as she was coloring in her color book, Bea says she suddenly started struggling to breathe. Her eyes became glassy and her face got very red... and she began to hyperventilate and gasp for air. Bea called me to ask what to do, and I suggested she have Katie breathe in some steam from boiling water in a pan... or steam from the shower. It's good for the bronchials, can be calming... and if this was mental, it could derail her from the spiral down. If the steam didn't help, I was ready to call 911.
As a note... this wasn't the first episode like this.... Katie has had several incidents where she couldn't breathe and struggled for air... and each time there was no apparent reason for it.
Bea said she had Katie breathe in steam from a pot in the kitchen, and as Katie was struggling for air, her eye caught sight of a small can of mandarin oranges on the shelf.... and through gasps said, "Aunt Bea... I think oranges would help". Despite the oddity of the request, Bea fed her some canned oranges... and in a few minutes Katie relaxed and her breathing returned to normal. Katie called me to say she was doing fine and not to worry.
So OOOOOOKAY. Just another every-day drama in the life of the Conner family.
Bea also said Katie accidentally wet the bed that same night... (she hasn't done that in YEARS). Katie was very apologetic and helpful in cleaning it up.. and said she had been dreaming about going to the bathroom and suddenly woke up when she had started going. (Don't nobody tell anybody... but I've done that too). I tried not to laugh too loud when Bea arrived at our house with Katie and an armful of bed sheets in tow for the laundry room.
Katie had another difficult night last night in trying to fall asleep... she was very unsettled and restless... and wasn't able to get to sleep until after 10:30.
And then we were up at 5:30 this morning. Woohoohoo... and we get to do another rainy drive into Westwood. Oh joys.... Actually... it wasn't SO bad as Friday's drive home. Thank God for the diamond lane.
The end of day report was that Katie did well and had a good day... and despite the weather, we made it home in record time. At dinner she had a few moments of whineyness and anger,,, but it soon broke and she became delightfully... almost unusually pleasant. I can tell she is trying... working hard at what she has learned so far. We have a long journey ahead and much still to be accomplished... but it's a great start. I can tell Katie is beginning to "get it"... and there is hope in her heart too.
I can hear Mark and Katie laughing very hard downstairs... I love hearing that.... mmmmm.....
Tomorrow Mark will accompany Katie to UCLA... just the two of them... a first. I get to have a fun day getting my nails done and other beautifying things done to me. I can't tell you how much I am looking forward to be pampered for a few hours...
Uh-oh... now I hear Katie angry and crying... good grief.... now she is storming upstairs... gotta run.
Chow 4 Now.
Susan
Katie got to go to a "High School Musical" play at a nearby theater... and when she came home, she was so excited to show me the autographs she had gotten. I had to grin remembering the many autographs I had gotten as a kid. What did I ever do with those things?? Such a fun, silly fad.
Bea said Katie had a pretty good weekend with only a couple disturbing incidents. One night as she was coloring in her color book, Bea says she suddenly started struggling to breathe. Her eyes became glassy and her face got very red... and she began to hyperventilate and gasp for air. Bea called me to ask what to do, and I suggested she have Katie breathe in some steam from boiling water in a pan... or steam from the shower. It's good for the bronchials, can be calming... and if this was mental, it could derail her from the spiral down. If the steam didn't help, I was ready to call 911.
As a note... this wasn't the first episode like this.... Katie has had several incidents where she couldn't breathe and struggled for air... and each time there was no apparent reason for it.
Bea said she had Katie breathe in steam from a pot in the kitchen, and as Katie was struggling for air, her eye caught sight of a small can of mandarin oranges on the shelf.... and through gasps said, "Aunt Bea... I think oranges would help". Despite the oddity of the request, Bea fed her some canned oranges... and in a few minutes Katie relaxed and her breathing returned to normal. Katie called me to say she was doing fine and not to worry.
So OOOOOOKAY. Just another every-day drama in the life of the Conner family.
Bea also said Katie accidentally wet the bed that same night... (she hasn't done that in YEARS). Katie was very apologetic and helpful in cleaning it up.. and said she had been dreaming about going to the bathroom and suddenly woke up when she had started going. (Don't nobody tell anybody... but I've done that too). I tried not to laugh too loud when Bea arrived at our house with Katie and an armful of bed sheets in tow for the laundry room.
Katie had another difficult night last night in trying to fall asleep... she was very unsettled and restless... and wasn't able to get to sleep until after 10:30.
And then we were up at 5:30 this morning. Woohoohoo... and we get to do another rainy drive into Westwood. Oh joys.... Actually... it wasn't SO bad as Friday's drive home. Thank God for the diamond lane.
The end of day report was that Katie did well and had a good day... and despite the weather, we made it home in record time. At dinner she had a few moments of whineyness and anger,,, but it soon broke and she became delightfully... almost unusually pleasant. I can tell she is trying... working hard at what she has learned so far. We have a long journey ahead and much still to be accomplished... but it's a great start. I can tell Katie is beginning to "get it"... and there is hope in her heart too.
I can hear Mark and Katie laughing very hard downstairs... I love hearing that.... mmmmm.....
Tomorrow Mark will accompany Katie to UCLA... just the two of them... a first. I get to have a fun day getting my nails done and other beautifying things done to me. I can't tell you how much I am looking forward to be pampered for a few hours...
Uh-oh... now I hear Katie angry and crying... good grief.... now she is storming upstairs... gotta run.
Chow 4 Now.
Susan
Day Seven: Rain Rain Go Away....
Today was a fair day for Katie... she had some challenges with body pains when she would get overwhelmed in her school work... typical as was before we came here. It appears things are returning to "normal"... which is a good thing... we can't get to the root problems if we don't see them.
One of the 12 year old girls in the program with Katie (her name is Harriet) surprisingly lives 1 mile from our home, and her mom asked me today if I would be able to bring her home at the end of the day. I was hesitant because I had heard she can be verrrry combative... but I felt God was saying yes... so after signing several release forms, the plan was set. Katie was thrilled when she found out Harriet was coming home with us.
I wish the drive home had been as good as the day. It was raining hard here... and it took us 3 hours to get home. But the girls did fine in the back seat... actually keeping each other entertained... and although I heard a few complaints regarding sore tushies (mine was too), the drive was uneventful and we all made it home safely.
The first week is complete. I made it.
Someone show me to my bed. I have a very long SLEEP with my name on it somewhere on my pillow and I intend to find it this weekend.
One of the 12 year old girls in the program with Katie (her name is Harriet) surprisingly lives 1 mile from our home, and her mom asked me today if I would be able to bring her home at the end of the day. I was hesitant because I had heard she can be verrrry combative... but I felt God was saying yes... so after signing several release forms, the plan was set. Katie was thrilled when she found out Harriet was coming home with us.
I wish the drive home had been as good as the day. It was raining hard here... and it took us 3 hours to get home. But the girls did fine in the back seat... actually keeping each other entertained... and although I heard a few complaints regarding sore tushies (mine was too), the drive was uneventful and we all made it home safely.
The first week is complete. I made it.
Someone show me to my bed. I have a very long SLEEP with my name on it somewhere on my pillow and I intend to find it this weekend.
Thursday, February 12, 2009
Day Six: Our Marathon Thursdays Begin....
Today all 4 of us woke up early and went to UCLA together. Today begins our "Marathon Thursdays"... the weekly day we will have ALL DAY MEETINGS with many of the specialists working with Katie... to be trained, counseled and given a progress report and information on their testing and findings of the week.
When we dropped Katie off at the clinic she was weepy and told us that her tummy hurt and she didn't feel good. She was clingy to me and I could tell she didn't want to be there this morning. I knew why too.... last night she told me that she didn't like Miss. Melody (the Psychologist she talks with). She said Miss Melody wanted her to fill out a "Feelings" sheet... and when Katie said she didn't want to... Miss Melody kindly said she'd wait till Katie was ready. Katie got an instant "tummy ache" and Miss Melody continued to wait. Katie cried... and started to melt down... and Miss Melody continued to wait. Later in the day Katie was able to finish the assignment.
What can I say... it sounds like the honeymoon is finally over.
Mark, Bea and I had meetings all afternoon with a family support group... and then with the psychologist, the neuro-psychiatrist, the social worker, a psychiatric intern, and the parental teaching nurse... and by the end of the day we were exhausted. We got some very interesting information though...
Katie does NOT have Duane's Syndrome which she had been diagnosed with many years ago. The geneticist says that Katie's tests have proven she has something called Moebius Syndrome, although it has not affected her facial muscles. It has, however, affected her eye movement, the formation of her feet and ankles, her teeth and jaw deformity as well as the mid-line defect of her entire right side. Looking back, we can see now why she couldn't suck, swallow, and breathe at the same time when she was born. You can go to http://www.moebiussyndrome.com/ and read about it. We will have a meeting with the UCLA genetics counselor to go over their findings in detail later. But for now, we have better clarity about what she is optically, orally and orthopedically challenged with. Have I mentioned lately how thankful I am to have access to one of the best and most renowned hospitals in the WORLD?
The neuro-psychiatrist told us that they are going to ween Katie off one of her medication (Abilify) this weekend, but keep her on the Clonidine for her Tourette's Syndrome tic control. Because we haven't seen positive response to the Abilify, we want to see how she is without it. If Katie doesn't do well or goes backward in her mood and impulse control, we will need to start her on a different medication that will need frequent blood tests (once a week) until the level is stabilized. After that, we will only need blood tests once every 6 months. Ugh... blood tests. Let's hope she does well without it.
It was another good but difficult day in family therapy for Mark, Bea and I... but it's encouraging to know we are finally getting in sync with each other as Katie's parents and guardian. It can only go UP from here.
I am absolutely exhausted to the bone and going to bed now. I have one more verrrrry early morning and looooong day at UCLA tomorrow before the weekend. Then I get to do it all over again on Monday... and the Monday after that... and the Monday after that... and the Monday after that... and... well, you get the picture.
Nightie night.
When we dropped Katie off at the clinic she was weepy and told us that her tummy hurt and she didn't feel good. She was clingy to me and I could tell she didn't want to be there this morning. I knew why too.... last night she told me that she didn't like Miss. Melody (the Psychologist she talks with). She said Miss Melody wanted her to fill out a "Feelings" sheet... and when Katie said she didn't want to... Miss Melody kindly said she'd wait till Katie was ready. Katie got an instant "tummy ache" and Miss Melody continued to wait. Katie cried... and started to melt down... and Miss Melody continued to wait. Later in the day Katie was able to finish the assignment.
What can I say... it sounds like the honeymoon is finally over.
Mark, Bea and I had meetings all afternoon with a family support group... and then with the psychologist, the neuro-psychiatrist, the social worker, a psychiatric intern, and the parental teaching nurse... and by the end of the day we were exhausted. We got some very interesting information though...
Katie does NOT have Duane's Syndrome which she had been diagnosed with many years ago. The geneticist says that Katie's tests have proven she has something called Moebius Syndrome, although it has not affected her facial muscles. It has, however, affected her eye movement, the formation of her feet and ankles, her teeth and jaw deformity as well as the mid-line defect of her entire right side. Looking back, we can see now why she couldn't suck, swallow, and breathe at the same time when she was born. You can go to http://www.moebiussyndrome.com/ and read about it. We will have a meeting with the UCLA genetics counselor to go over their findings in detail later. But for now, we have better clarity about what she is optically, orally and orthopedically challenged with. Have I mentioned lately how thankful I am to have access to one of the best and most renowned hospitals in the WORLD?
The neuro-psychiatrist told us that they are going to ween Katie off one of her medication (Abilify) this weekend, but keep her on the Clonidine for her Tourette's Syndrome tic control. Because we haven't seen positive response to the Abilify, we want to see how she is without it. If Katie doesn't do well or goes backward in her mood and impulse control, we will need to start her on a different medication that will need frequent blood tests (once a week) until the level is stabilized. After that, we will only need blood tests once every 6 months. Ugh... blood tests. Let's hope she does well without it.
It was another good but difficult day in family therapy for Mark, Bea and I... but it's encouraging to know we are finally getting in sync with each other as Katie's parents and guardian. It can only go UP from here.
I am absolutely exhausted to the bone and going to bed now. I have one more verrrrry early morning and looooong day at UCLA tomorrow before the weekend. Then I get to do it all over again on Monday... and the Monday after that... and the Monday after that... and the Monday after that... and... well, you get the picture.
Nightie night.
Wednesday, February 11, 2009
Day Five: No Time for Regrets
Last night Katie had a few moments of explosiveness, but for the most part was delightfully herself. She was cheerful on the way to the clinic and despite having to work through a few challenges had a fairly good day.
My day, however, didn't go as easily as I had planned. Once I dropped Katie off at the clinic, the social worker and the psychologist caught me in the hall before I was out the door and asked if they could speak with me. As always, I was more than willing to comply.
They took me to a room and said, "The issues that Katie is challenged with .... and the diagnosis of Duane's Syndrome... are usually the result from one of two possibilities... it is either a genetic disturbance or Fetal Alcohol Syndrome. I know we spoke with you in length at the last family meeting, but we wanted to call you in privately and ask you again if you were drinking alcohol or using drugs when you were pregnant with Katie".
My heart sank. Had they not believed me? It so took me by surprise I even took a moment and questioned myself again. NO! NOT A DROP!!! I haven't had ANY alcohol or 'used' in over 23 years! I can certainly understand why they would NEED to ask a parent a second time for such an important and sensitive issue... they were doing a fine job of investigation.... but I can completely stand face to face with God as my judge and say, NO... not one drop!!!
Then they asked me about Russell my son and my pregnancy with him.... and if there had been any alcohol or drug use then. I thought for a minute. No.... not a dro.....wait!!! Suddenly in that moment, I felt guilt begin to swallow me. Yes.... I had MANY drugs when I was pregnant with Russell. It was during my pregnancy with him that I had broken my back and neck in that auto accident. I had x-rays... many of them. I had strong opiates for pain.. a lot of them. And as I recalled those horrible dark days, I was getting sick to my stomach as we talked. Did all those things in the hospital... and then at home... did they hurt my little boy? Did I indirectly kill him because of those things?
We continued to talk about other details of my past life... and then again about my pregnancy with Katie... any holistic drugs or lotions... or vitamins... or anything? They were very kind in their probing... and certainly non accusatory. They just needed to know if there was anything we were missing.
NO. Not with Katie. I was clear.
But as I walked out of that meeting, I was freshly face to face with all the ugly details of my past... and my heart was scraping the pavement as I walked out of the building. It wasn't just the memories of Russell (I couldn't help needing those things because of the accident I had been in)... but all the OTHER stuff when I wasn't so innocent. ALL those wasted years of rebellion... needless troubles... self inflicted... alcohol... drugs... smoking... wounded relationships... lies told... ugh....
But it was then my dear, tender, merciful Savior pushed the "Play" button in my head and I began to hear the words of that song again....
".....I don't have time to maintain these regrets when I think about the way He LOVES ME...."
What was I doing? The enemy of my soul was accusing me "both day and night"... stirring up painful past regrets... many of them... and I was falling for it. I had driven Katie all the way home with a hurting, heavy heart... and was in tears when I arrived. I ran to the bathroom in our room and began to speak out loud... ALL OF THOSE YEARS ARE UNDER THE BLOOD OF THE LAMB!!!! And he who is set free is FREE INDEED! Jesus has wiped those tears from my heart and face and I will be hanged if I go back there and wallow beneath that rock of accusation again.
I shook off the cobwebs of dispair and regret, and started thanking God for all He has done for me... and is still doing for me. Despite its challenges, I have a very good life. No pity parties are welcome here. And so I sang that song again... over and over... and then went to bed early.
No time for regrets.
Susan
My day, however, didn't go as easily as I had planned. Once I dropped Katie off at the clinic, the social worker and the psychologist caught me in the hall before I was out the door and asked if they could speak with me. As always, I was more than willing to comply.
They took me to a room and said, "The issues that Katie is challenged with .... and the diagnosis of Duane's Syndrome... are usually the result from one of two possibilities... it is either a genetic disturbance or Fetal Alcohol Syndrome. I know we spoke with you in length at the last family meeting, but we wanted to call you in privately and ask you again if you were drinking alcohol or using drugs when you were pregnant with Katie".
My heart sank. Had they not believed me? It so took me by surprise I even took a moment and questioned myself again. NO! NOT A DROP!!! I haven't had ANY alcohol or 'used' in over 23 years! I can certainly understand why they would NEED to ask a parent a second time for such an important and sensitive issue... they were doing a fine job of investigation.... but I can completely stand face to face with God as my judge and say, NO... not one drop!!!
Then they asked me about Russell my son and my pregnancy with him.... and if there had been any alcohol or drug use then. I thought for a minute. No.... not a dro.....wait!!! Suddenly in that moment, I felt guilt begin to swallow me. Yes.... I had MANY drugs when I was pregnant with Russell. It was during my pregnancy with him that I had broken my back and neck in that auto accident. I had x-rays... many of them. I had strong opiates for pain.. a lot of them. And as I recalled those horrible dark days, I was getting sick to my stomach as we talked. Did all those things in the hospital... and then at home... did they hurt my little boy? Did I indirectly kill him because of those things?
We continued to talk about other details of my past life... and then again about my pregnancy with Katie... any holistic drugs or lotions... or vitamins... or anything? They were very kind in their probing... and certainly non accusatory. They just needed to know if there was anything we were missing.
NO. Not with Katie. I was clear.
But as I walked out of that meeting, I was freshly face to face with all the ugly details of my past... and my heart was scraping the pavement as I walked out of the building. It wasn't just the memories of Russell (I couldn't help needing those things because of the accident I had been in)... but all the OTHER stuff when I wasn't so innocent. ALL those wasted years of rebellion... needless troubles... self inflicted... alcohol... drugs... smoking... wounded relationships... lies told... ugh....
But it was then my dear, tender, merciful Savior pushed the "Play" button in my head and I began to hear the words of that song again....
".....I don't have time to maintain these regrets when I think about the way He LOVES ME...."
What was I doing? The enemy of my soul was accusing me "both day and night"... stirring up painful past regrets... many of them... and I was falling for it. I had driven Katie all the way home with a hurting, heavy heart... and was in tears when I arrived. I ran to the bathroom in our room and began to speak out loud... ALL OF THOSE YEARS ARE UNDER THE BLOOD OF THE LAMB!!!! And he who is set free is FREE INDEED! Jesus has wiped those tears from my heart and face and I will be hanged if I go back there and wallow beneath that rock of accusation again.
I shook off the cobwebs of dispair and regret, and started thanking God for all He has done for me... and is still doing for me. Despite its challenges, I have a very good life. No pity parties are welcome here. And so I sang that song again... over and over... and then went to bed early.
No time for regrets.
Susan
Tuesday, February 10, 2009
Day Four: Kourageous Kate
Well... the morning started out a little earlier than normal because we had to get to the Laboratory first. There was no traffic and we were able to sail on the roads quickly. When we were almost there, I told Katie that she had to give a urinalysis at the Lab first. "Do I need to get a poke too?" she asked. I swallowed hard and told her that I hadn't looked at the paperwork that morning and would check when we got there (that's true... I hadn't looked at it that morning yet).
He loves you.
(and we do too... )
Thanks for your prayers.
When they handed me the urine container for Katie, she asked me again... "Do I need to get a poke too?"... and this time I told her yes. She began to cry (wouldn't you??) and yet was compliant and non resistant. After much coaching and encouragement from her mom... and a truckload of tears, the tech slid the needle in... and Katie suddenly stopped crying and looked up at me... "It never hurts very much... why do I get so afraid?" I had to laugh and told her that NOBODY LIKES needles... they are scary... but blood work seldom hurts that much. I told her how proud I was of her courage and strength and she gave me a big grin. I think she complained more about the tape on her arm than she did the poke... and then we were off to the clinic.
I had a good discussion with the clinic staff about Katie's perplexing evening... handed in the paperwork... was reassured by Nurse Barbara that we would discuss this in detail at our next meeting on Thursday... and then I made my way down to the parents lounge for the day. A warm cup of sugar-free hot chocolate helped me to close my eyes and let the Holy Spirit stroke my heart and calm my frazzled nerves.
I had a good discussion with the clinic staff about Katie's perplexing evening... handed in the paperwork... was reassured by Nurse Barbara that we would discuss this in detail at our next meeting on Thursday... and then I made my way down to the parents lounge for the day. A warm cup of sugar-free hot chocolate helped me to close my eyes and let the Holy Spirit stroke my heart and calm my frazzled nerves.
At 2:45 like clockwork I made my way upstairs and got my daily report on how Katie did during the day. She did well... another good day... but at one point, while she was talking with the psychologist, Katie began to get very emotional... refusing to answer any more questions. The Psychologist (Melody) told Katie that when we hold our emotions and thoughts in they can cause us body pains. Katie kept telling Melody she didn't know what she was feeling and didn't want to talk anymore, so they spent the rest of the session playing with a ball. Someone could look at this as uneventful, but for us this is a beginning of breakthrough. She is becoming "real" with her tears and the honeymoon might be nearing its end.
Two songs have been on "continuous play" in my head for the past 4 days...
"God will make a way, where there seems to be no way
He works in ways we cannot see, He will make a way for me
He will be my guide, hold me closely to His side
With love and strength for each new day, He will make a way
God will make a way".
...and the other...
"He is jealous for me
He loves like a hurricane, I am a tree
bending beneath the weight of His wind and mercy
When all of a sudden I am unaware of these afflictions eclipsed by glory
and I realize just how beautiful He is and how great His affections are for me....
And oh, how He loves us so...
Oh How He loves us...
How He loves us so....
He is our portion and we are His prize
Drawn to redemption by the grace in His eyes
If grace is an ocean, we're all sinking...
Then heaven meets earth like a sloppy wet kiss
and my heart turns violently inside of my chest
I don't have time to maintain these regrets
when I think about the way....
He loves me,
Oh how He loves me,
Oh how He loves me,
Oh how He LOVES."
No time for regrets... no time for fear... no time for doubt...
He loves me.
"God will make a way, where there seems to be no way
He works in ways we cannot see, He will make a way for me
He will be my guide, hold me closely to His side
With love and strength for each new day, He will make a way
God will make a way".
...and the other...
"He is jealous for me
He loves like a hurricane, I am a tree
bending beneath the weight of His wind and mercy
When all of a sudden I am unaware of these afflictions eclipsed by glory
and I realize just how beautiful He is and how great His affections are for me....
And oh, how He loves us so...
Oh How He loves us...
How He loves us so....
He is our portion and we are His prize
Drawn to redemption by the grace in His eyes
If grace is an ocean, we're all sinking...
Then heaven meets earth like a sloppy wet kiss
and my heart turns violently inside of my chest
I don't have time to maintain these regrets
when I think about the way....
He loves me,
Oh how He loves me,
Oh how He loves me,
Oh how He LOVES."
No time for regrets... no time for fear... no time for doubt...
He loves me.
He loves Katie.
He loves Mark.
He loves Bea.
He loves these doctors.
He loves you.
(and we do too... )
Thanks for your prayers.
Susan
Day Three: A Tale of Two Different People
This morning we were all up and dressed at 5:30 AM and made record time to UCLA. Katie was very agreeable and tender hearted... and happily greeted everyone by name when she arrived. She sat down to a bowl of cereal in the ABC's dining room and her day began.
Mark, Bea and I had our "Parental Teaching" meeting with nurse Barbara who asked some very interesting questions... and then prepared her strategy as to what tools we'll need to be equipped with in order to help Katie beyond her struggles.
Following that meeting, we met with the Psychologist, Miss. Melody... and the Social Worker, Miss Wendy. This was a verrrrry tough meeting that left us teary and heavy hearted. We had to delve into our pasts... and then talk about the tension and disagreements Mark and I had over the past weekend that put Katie on edge... which led to a discussion about our own personal character flaws. (Nope... we aren't perfect...) All of this plays into Katie's challenges in some way or another, and it's a good thing in meetings like this to get everything out on the table so we can begin the process of coming together as one team to help Katie... and in the long run... ourselves. It's no cake-walk to share painful truths about yourself... or your spouse... or your friend.... and then watch each other's faces and hearts sink as the realities of how what we have said or done in the past has wounded the very ones we love. But progress is seldom made without sacrifice and pain... and only what we push down and ignore will hurt us. So we got it out... and out... and out....
When the day was over, we got the report on Katie that she had another wonderful day... the perfect child. She's still on her honeymoon. Time will bring truth. The drive home was again a record-time commute... thank God for the diamond lane.
When we got home, we got Katie's semester report card from her school which was a very SURPRISINGLY good one. Wow... she is "getting it" despite all the challenges she has had. We praised her over and over for doing such a fantastic job... and Bea gave her $5 to go buy herself something at the "Dollar Tree". She climbed in the back seat of the car... so happy... no pressures... a fun outing.... and then one block away from the house, BAM... she suddenly changed and flipped into an angry, sassy, foul-mouthed person. Bea was shocked and asked Katie what changed and why she was acting that way. Katie continued to be hostile and foul mouthed... a TOTALLY different personality and absolutely inappropriate language and context... and ALL un-provoked. Bea didn't know what to do... or what to say...
After minutes back in the house, Katie flipped back to her darling self again... full of love and cuddles. She was very agreeable... and said she didn't know why she acted that way. She set the table, served us dinner with coos and smiles... then got her bath and jammies on .... ALL WITHOUT whining or complaint. She went to bed on time without resistance and was asleep by 8:15. Who was that person in the back seat???? Certainly not our Katie... that's for sure.
Bea sat and cried as she told us what had happened... and how very perplexed and broken hearted she was... not that Katie was so mean and foul, but that whatever it was that spoke to her from the back seat, it surely wasn't the Katie we know... and Katie felt awful about herself afterwards. We documented the goings-on of the evening on the forms that the clinic has us filling out while at home so they can know about any changes from the day... such as this.
It has been a difficult and very LOOOOOOOONG day for all of us. I will take Katie tomorrow to the clinic by myself and have a chat with the psychiatrist about the evening.... but before I do we have another obstacle to cross first... Katie needs blood work and a urinalysis done in the morning at UCLA's lab. Katie HATES needles... (don't we all?). Well, mommy is no stranger to the lab, but I think I'll wait to tell her till later tomorrow morning before we get to Westwood.
Better get my sleep.
Mark, Bea and I had our "Parental Teaching" meeting with nurse Barbara who asked some very interesting questions... and then prepared her strategy as to what tools we'll need to be equipped with in order to help Katie beyond her struggles.
Following that meeting, we met with the Psychologist, Miss. Melody... and the Social Worker, Miss Wendy. This was a verrrrry tough meeting that left us teary and heavy hearted. We had to delve into our pasts... and then talk about the tension and disagreements Mark and I had over the past weekend that put Katie on edge... which led to a discussion about our own personal character flaws. (Nope... we aren't perfect...) All of this plays into Katie's challenges in some way or another, and it's a good thing in meetings like this to get everything out on the table so we can begin the process of coming together as one team to help Katie... and in the long run... ourselves. It's no cake-walk to share painful truths about yourself... or your spouse... or your friend.... and then watch each other's faces and hearts sink as the realities of how what we have said or done in the past has wounded the very ones we love. But progress is seldom made without sacrifice and pain... and only what we push down and ignore will hurt us. So we got it out... and out... and out....
When the day was over, we got the report on Katie that she had another wonderful day... the perfect child. She's still on her honeymoon. Time will bring truth. The drive home was again a record-time commute... thank God for the diamond lane.
When we got home, we got Katie's semester report card from her school which was a very SURPRISINGLY good one. Wow... she is "getting it" despite all the challenges she has had. We praised her over and over for doing such a fantastic job... and Bea gave her $5 to go buy herself something at the "Dollar Tree". She climbed in the back seat of the car... so happy... no pressures... a fun outing.... and then one block away from the house, BAM... she suddenly changed and flipped into an angry, sassy, foul-mouthed person. Bea was shocked and asked Katie what changed and why she was acting that way. Katie continued to be hostile and foul mouthed... a TOTALLY different personality and absolutely inappropriate language and context... and ALL un-provoked. Bea didn't know what to do... or what to say...
After minutes back in the house, Katie flipped back to her darling self again... full of love and cuddles. She was very agreeable... and said she didn't know why she acted that way. She set the table, served us dinner with coos and smiles... then got her bath and jammies on .... ALL WITHOUT whining or complaint. She went to bed on time without resistance and was asleep by 8:15. Who was that person in the back seat???? Certainly not our Katie... that's for sure.
Bea sat and cried as she told us what had happened... and how very perplexed and broken hearted she was... not that Katie was so mean and foul, but that whatever it was that spoke to her from the back seat, it surely wasn't the Katie we know... and Katie felt awful about herself afterwards. We documented the goings-on of the evening on the forms that the clinic has us filling out while at home so they can know about any changes from the day... such as this.
It has been a difficult and very LOOOOOOOONG day for all of us. I will take Katie tomorrow to the clinic by myself and have a chat with the psychiatrist about the evening.... but before I do we have another obstacle to cross first... Katie needs blood work and a urinalysis done in the morning at UCLA's lab. Katie HATES needles... (don't we all?). Well, mommy is no stranger to the lab, but I think I'll wait to tell her till later tomorrow morning before we get to Westwood.
Better get my sleep.
Monday, February 9, 2009
Day Two: An Uneventful Day
Friday was a very good day. Susan (that's me) took Katie to the clinic in the morning, and despite the rain made good time in getting down there, actually arriving 15 minutes early (7:15 AM). Katie was happy to return to the ABC Clinic, telling mommy over and over how much she loved it there. I spoke with the educator and social worker for two hours and then made my way down to the family waiting room for the rest of the day where I did some journaling and caught up on emails.
When I picked Katie up at 3:00 that afternoon, the report was that she had a good day and was able to join a "goodbye" party for one of the children who was graduating from the program back into their own school again. Katie had 'earned' points for her good behavior that day, and was able to spend these points on a toy in the ABC Gift Shoppe. It was noted by the staff that Katie is still in the honeymoon stage of the game... and they understanding that it sometimes takes a child over a month before they begin to show their real challenges. Nevertheless, we are trusting that God will lead the way... orchestrate timing... and bring everything that she (and we) struggle with to the surface.
It was raining HARD all the way home... and despite that it took her and I 2 1/2 hours to get home, Katie tolerated the ride well.
On Monday we will all go together again (Mark, Bea and Susan and Katie)and while Katie is being evaluated by several doctors, the three adults will have a Family Meeting with the behavioral nurse, psychologist and social worker where we will talk about parental training and family issues. None of us have halos on our heads, so I'm sure we will all find areas where we can better ourselves in our personal lives as well as our family interactions.
Painful but productive.
We are as ready as we'll ever be.
Susan
When I picked Katie up at 3:00 that afternoon, the report was that she had a good day and was able to join a "goodbye" party for one of the children who was graduating from the program back into their own school again. Katie had 'earned' points for her good behavior that day, and was able to spend these points on a toy in the ABC Gift Shoppe. It was noted by the staff that Katie is still in the honeymoon stage of the game... and they understanding that it sometimes takes a child over a month before they begin to show their real challenges. Nevertheless, we are trusting that God will lead the way... orchestrate timing... and bring everything that she (and we) struggle with to the surface.
It was raining HARD all the way home... and despite that it took her and I 2 1/2 hours to get home, Katie tolerated the ride well.
On Monday we will all go together again (Mark, Bea and Susan and Katie)and while Katie is being evaluated by several doctors, the three adults will have a Family Meeting with the behavioral nurse, psychologist and social worker where we will talk about parental training and family issues. None of us have halos on our heads, so I'm sure we will all find areas where we can better ourselves in our personal lives as well as our family interactions.
Painful but productive.
We are as ready as we'll ever be.
Susan
Thursday, February 5, 2009
Day One: Questions, Questions, Questions
The Canyon Country caravan arrived at 8 am...after a 75-minute drive through traffic, parking, finding the ABC Clinic, etc. We all were understandably nervous...especially Katie. But somewhere between leaving the car and releasing our girl to the clinic, the Hannah Montana "security" blanket transferred from Katie into Mom's hands for safe-keeping. After a tour of the facilities (when Katie was introduced to the other seven kids in the program) and a few tears, we parted for the day. Susan, Bea and I then embarked upon hours of questions, surveys and meetings with the clinic director, a social worker, two doctors and a nurse. We also met the recreation director and three other associates. All in all, it was a very good day...but very draining.
Several instances noteworthy for the blog. After our first round of meetings, the three adults headed for the cafeteria for a brief break. Though none of us voiced our desire, we each stood in front of the elevator door, longing to learn how Katie was doing. Imagine our surprise when Katie and her nurse, Barbara, walked off the elevator in front of us. "Hi, Mom," Katie said with a big smile as she walked over to hug Susan. That answered our question.
Second, as we approached the cafeteria, the surroundings looked very familiar. Upon entering, a sense of deja vu overtook Susan and I. We had been here many times before, over nine years ago when Katie was in the same hospital for her heart surgery. God used the gifted people of this hospital to save her life once...now we're here for a second time expecting a similar, life-saving miracle from a different group of people.
As the day ended, we received an hour-by-hour recap of Katie's day. This is something that will occur daily. It was confirmed that Katie had a good first day, with little appearance of an emotional meltdown.
Susan will take the trek to Westwood tomorrow. Parental involvement with the kids is not allowed, so our ideas of being hands-on was overoptimistic. Our involvement will be limited to separate one-hour meetings with the lead psychologist and the nurse. We also will have "homework" each night to record Katie's actions. This will ensure a 24-hour monitoring of her situation. But outside of that, we're not directly involved.
Blessings on you all...
Mark
Several instances noteworthy for the blog. After our first round of meetings, the three adults headed for the cafeteria for a brief break. Though none of us voiced our desire, we each stood in front of the elevator door, longing to learn how Katie was doing. Imagine our surprise when Katie and her nurse, Barbara, walked off the elevator in front of us. "Hi, Mom," Katie said with a big smile as she walked over to hug Susan. That answered our question.
Second, as we approached the cafeteria, the surroundings looked very familiar. Upon entering, a sense of deja vu overtook Susan and I. We had been here many times before, over nine years ago when Katie was in the same hospital for her heart surgery. God used the gifted people of this hospital to save her life once...now we're here for a second time expecting a similar, life-saving miracle from a different group of people.
As the day ended, we received an hour-by-hour recap of Katie's day. This is something that will occur daily. It was confirmed that Katie had a good first day, with little appearance of an emotional meltdown.
Susan will take the trek to Westwood tomorrow. Parental involvement with the kids is not allowed, so our ideas of being hands-on was overoptimistic. Our involvement will be limited to separate one-hour meetings with the lead psychologist and the nurse. We also will have "homework" each night to record Katie's actions. This will ensure a 24-hour monitoring of her situation. But outside of that, we're not directly involved.
Blessings on you all...
Mark
Wednesday, February 4, 2009
We're Off to UCLA Tomorrow
The phone rang today with the news we've been anticipating for several weeks: Katie has been accepted into the ABC Clinic at UCLA Medical Center, starting tomorrow.
The call came none too soon. Miss Kate now experiences an emotional meltdown--uncontrollable, hysterical, hyperventilating crying over a seemingly insignificant occurrence--at least once a day, sometimes more. Last week, her 4th grade class at school received its indoctrination.
We'll leave home at 6:30 am...praise God for the carpool lane...in time for an 8 am meeting. Chances are, we'll spend the entire day on campus before loading up at 3:00 to come home. That regimen will be repeated for four to eight weeks, five days a week (except we'll leave home at 6:00 am for a 7:30 arrival).
Susan and I are anxiously excited about the care Katie will receive. Envision 12 different medical specialists unleashing their expertise on all those "weirdisms" that plague our girl. We're not sure what they will find...but trust that every avenue will be pursued.
For your part, please pray for all three of us (and Bea, too). We are prepared for an exhausting season...physically, emotionally and mentally. But God has cleared our schedules (I was laid off three weeks ago) and provided our financial needs (insurance pays 100% of the clinic's fees and I received a nice severance package).
On a final note, I've chosen the colors pink and purple because they are two of Katie's favorites. After all, this experience is all about her.
Mark
The call came none too soon. Miss Kate now experiences an emotional meltdown--uncontrollable, hysterical, hyperventilating crying over a seemingly insignificant occurrence--at least once a day, sometimes more. Last week, her 4th grade class at school received its indoctrination.
We'll leave home at 6:30 am...praise God for the carpool lane...in time for an 8 am meeting. Chances are, we'll spend the entire day on campus before loading up at 3:00 to come home. That regimen will be repeated for four to eight weeks, five days a week (except we'll leave home at 6:00 am for a 7:30 arrival).
Susan and I are anxiously excited about the care Katie will receive. Envision 12 different medical specialists unleashing their expertise on all those "weirdisms" that plague our girl. We're not sure what they will find...but trust that every avenue will be pursued.
For your part, please pray for all three of us (and Bea, too). We are prepared for an exhausting season...physically, emotionally and mentally. But God has cleared our schedules (I was laid off three weeks ago) and provided our financial needs (insurance pays 100% of the clinic's fees and I received a nice severance package).
On a final note, I've chosen the colors pink and purple because they are two of Katie's favorites. After all, this experience is all about her.
Mark
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