Thanks for everyone checking in on Lindsay and her knee! Here is an update......
Thankfully, after the frustrating process of the MRI, the doctor was able to get one good image showing that she didn't have any damage to the knee but it did show some fluid around the area. He watched her walk around the office with no indication of severe pain or limping and after discussion, we have decided to take a step by step process.
First step, is to get blood work to see if anything else is going on. We belong to a Registry of parents and affected individuals with abnormalities of the 18th Chromosome. There are several abnormalities, of which Lindsay was diagnosed with 18P- (minus) Syndrome. It is a short deletion on the top arm of the 18th Chromosome. The slight deletion has affected her communication, learning and cognitive development. Others who have 18P- sometimes have more of the Chromosome missing, which involves many more physical ailments, for which we are grateful that Lindsay doesn't have. The Registry is called Chromosome 18 Registry and Research Society and they continue to study the development, life and medical aspects of those who have these chromosome abnormalities. One area of interest is the possibility that those who have what Lindsay has may be subject to an early onset of arthritis. So, this may be something that may be shown in blood work.
Second, we are going to continue our routine of wearing her knee brace, icing the knee a few times a day and we report back in a few weeks. Lindsay rather likes her knee brace, it has become an accessory that she enjoys and doesn't mind sitting on the couch with her feet up, while her knee of being iced either! :)
We will keep you posted!
Thursday, October 28, 2010
Thursday, October 21, 2010
Note to Self.....listen to my instincts and pray for those who have no people skills
Today I was reminded of some lessons!
Lesson #1: Listen to my instincts with Lindsay, that I know her pretty well.
I had my reservations about how this MRI thing was going to work. I knew that she wasn't going to be real cooperative unless she was asleep! As the process of getting her ready began, I could see her anxiety level increasing. She had to take all of her jewelry off, she couldn't take her phone and she had an IV in her arm that really irriated her. AND...... she didn't like the fact that she had to take off her "bew" (bra). She quickly warmed up to the RN's by showing them a picture of Babygrr on my phone, at which time they showed us pictures of their "babies" too! Everyone was happy.
Then came the time to go to the MRI room. I noticed immediately that the technician wasn't real warm and fuzzy. I explained that things would go smoothly if I could transition Lindsay and help her comfort level but was informed I couldn't even be in the room and must go to the waiting room. Not five minutes later, she comes and tells me that the minute the machine started making noise, Lindsay tried getting out! Hello! I told you so! So, after signing a consent form, I was allowed in the MRI, next to the big tube, equipped with ear plugs sitting by Lindsay. She had been given some drugs to relax her and we tried again. Oh my gosh, I forgot how loud that thing is! We managed through the first series of dings and dongs. The tech had told me she could move her head, just so she didn't move her body. The next series started and stopped and then the next.....and then the door opened. "Did you see her move?" says the tech to me in a condensending way. I said, "Her head moved but you said that was ok".....then she says "not during the exam and she moved her whole body", with much irritation as though it was my fault! She then proceeds to tell me, "We only got one good scan if she is like this, this is going to take all day". Not what I wanted to hear! Lindsay then starts scooting out of her position, takes the oxygen out of her nose and says "I want to go". Lindsay gives me the sign language for bathroom and knowing that she hasn't had anything to eat or drink since midnight and that we went just before we came in, I say to Lindsay, " you are ok", knowing it is her ploy to get out of the situation. The tech looks at me and says in a irritated and questioning tone, "are you sure?". At which time, I say, "this isn't going to happen unless she is sedated" and the tech says, "so, are we done?" Oh, I could have bopped her one!
Lindsay pops off the MRI bed and she is happy and ready to "go to the store'! She wins! I am irritated at the tech, whose people skills need some training, at Lindsay for not cooperating and that it didn't work! In reality, made at myself that I didn't listen to my instincts. Lesson......I knew she would need to be sleeping if we tried this....."conscious sedation" wasn't going to cut it!
Lesson # 2 : Some people just don't get it
The MRI tech could have been having a bad day, I will give her that. But, it became very evident she didn't have the patience or tolerance for any fluctuations in the procedures. She didn't show any empathy for how Lindsay must be feeling or that she didn't understand the whole process. Lindsay doesn't realize the consequences of if she moves her body, the image will not be ok. Not to mention, the loud sounds, the bangs, the earplugs, the headphones, not getting to wear her bra! Too much for a girl to handle!
So we go back to the recovery room. I am getting over my frustration and the RN tells me that Lindsay actually did fine and that she sees many people come in with no developemental delays that have to be sedated because of their anxiety level. Our RN was amazingly intuitive to Lindsay, was patient and so understanding. Others that we encountered today need some extra prayers for people skills and patience.
Lesson #3: I am not alone
I take Lindsay to get some much delayed lunch and then "go to the store". All is well with the world! I hear a young lady in a loud voice say "mom, I am over here". I can see that she has special needs and while we are picking out strawberries, this young lady says to me, "do you know me?" I say "no, but you might know my daughter, Lindsay". At which time, her mother comes over and says hi to us and tells us that "she talks to everyone". I give her my hand and introduce myself and Lindsay, at which time I see a hospital band on her wrist. I ask her if she went to the doctor today too. She says, "yes, and they pricked me", showing me her wrist and bandaid. I tell her that Lindsay went to the same place today too! Her mother explains and I tell her that we attemped to have an MRI today but that it didn't go so well. Her mother tells me "oh yes, we have tried that too, and didn't have much luck either". Amazing how the universe works! It was just what I needed after a long day to help me realize......
I am not alone!
Lesson #1: Listen to my instincts with Lindsay, that I know her pretty well.
I had my reservations about how this MRI thing was going to work. I knew that she wasn't going to be real cooperative unless she was asleep! As the process of getting her ready began, I could see her anxiety level increasing. She had to take all of her jewelry off, she couldn't take her phone and she had an IV in her arm that really irriated her. AND...... she didn't like the fact that she had to take off her "bew" (bra). She quickly warmed up to the RN's by showing them a picture of Babygrr on my phone, at which time they showed us pictures of their "babies" too! Everyone was happy.
Then came the time to go to the MRI room. I noticed immediately that the technician wasn't real warm and fuzzy. I explained that things would go smoothly if I could transition Lindsay and help her comfort level but was informed I couldn't even be in the room and must go to the waiting room. Not five minutes later, she comes and tells me that the minute the machine started making noise, Lindsay tried getting out! Hello! I told you so! So, after signing a consent form, I was allowed in the MRI, next to the big tube, equipped with ear plugs sitting by Lindsay. She had been given some drugs to relax her and we tried again. Oh my gosh, I forgot how loud that thing is! We managed through the first series of dings and dongs. The tech had told me she could move her head, just so she didn't move her body. The next series started and stopped and then the next.....and then the door opened. "Did you see her move?" says the tech to me in a condensending way. I said, "Her head moved but you said that was ok".....then she says "not during the exam and she moved her whole body", with much irritation as though it was my fault! She then proceeds to tell me, "We only got one good scan if she is like this, this is going to take all day". Not what I wanted to hear! Lindsay then starts scooting out of her position, takes the oxygen out of her nose and says "I want to go". Lindsay gives me the sign language for bathroom and knowing that she hasn't had anything to eat or drink since midnight and that we went just before we came in, I say to Lindsay, " you are ok", knowing it is her ploy to get out of the situation. The tech looks at me and says in a irritated and questioning tone, "are you sure?". At which time, I say, "this isn't going to happen unless she is sedated" and the tech says, "so, are we done?" Oh, I could have bopped her one!
Lindsay pops off the MRI bed and she is happy and ready to "go to the store'! She wins! I am irritated at the tech, whose people skills need some training, at Lindsay for not cooperating and that it didn't work! In reality, made at myself that I didn't listen to my instincts. Lesson......I knew she would need to be sleeping if we tried this....."conscious sedation" wasn't going to cut it!
Lesson # 2 : Some people just don't get it
The MRI tech could have been having a bad day, I will give her that. But, it became very evident she didn't have the patience or tolerance for any fluctuations in the procedures. She didn't show any empathy for how Lindsay must be feeling or that she didn't understand the whole process. Lindsay doesn't realize the consequences of if she moves her body, the image will not be ok. Not to mention, the loud sounds, the bangs, the earplugs, the headphones, not getting to wear her bra! Too much for a girl to handle!
So we go back to the recovery room. I am getting over my frustration and the RN tells me that Lindsay actually did fine and that she sees many people come in with no developemental delays that have to be sedated because of their anxiety level. Our RN was amazingly intuitive to Lindsay, was patient and so understanding. Others that we encountered today need some extra prayers for people skills and patience.
Lesson #3: I am not alone
I take Lindsay to get some much delayed lunch and then "go to the store". All is well with the world! I hear a young lady in a loud voice say "mom, I am over here". I can see that she has special needs and while we are picking out strawberries, this young lady says to me, "do you know me?" I say "no, but you might know my daughter, Lindsay". At which time, her mother comes over and says hi to us and tells us that "she talks to everyone". I give her my hand and introduce myself and Lindsay, at which time I see a hospital band on her wrist. I ask her if she went to the doctor today too. She says, "yes, and they pricked me", showing me her wrist and bandaid. I tell her that Lindsay went to the same place today too! Her mother explains and I tell her that we attemped to have an MRI today but that it didn't go so well. Her mother tells me "oh yes, we have tried that too, and didn't have much luck either". Amazing how the universe works! It was just what I needed after a long day to help me realize......
I am not alone!
Monday, October 18, 2010
We are often reminded of Lindsay's high pain tolerance
We learned early on in Lindsay's life of her high pain tolerance. We knew that if she shed tears, it really hurt! She shows incredible toughness when others would be in agony. She never complains of things that ail her and if she does it is a mere little reference and maybe a "I hurt" comment not to be mentioned again.
For the past few months she has been wearing a knee brace, as her right knee appeared swollen one morning. She had come into our room and said "I hurt" and pointed to her leg. Her knee was swollen double in size compared to the other one. We have no idea how she may have injured her knee, nor when, as she never indicated to us that it was bothering her. For all we know, she could have been walking on it for awhile before she complained and before we noticed.
Unfortunately, the brace has helped but after a long day of walking or being out and about, it is often swollen again. So today we went to the Orthopaedic doctor and after the X-Rays showed nothing broken, he felt like the next step was an MRI. Which in itself, will be an experience. Lindsay would not sit still in a confined space for 45 minutes, so we need to go to the hospital and have what they call "conscious sedation". We will know then what the next course of action will be, which brings many questions to my mind. Crutches, no way. Wheel chair, oh my, we might not ever get her out of it! :). Surgery? Recovery? Her understanding of the process, the pain, being careful not to re-injure, etc.
We will just wait and see. But today I was reminded of her pain tolerance as the doctor picked up her knee, laid it out straight, bent it and rotated it around to see when and if she expressed any discomfort. Was she, or was she not, it is so hard to tell. And if she was in pain, bless her little heart, she didn't even show it!
For the past few months she has been wearing a knee brace, as her right knee appeared swollen one morning. She had come into our room and said "I hurt" and pointed to her leg. Her knee was swollen double in size compared to the other one. We have no idea how she may have injured her knee, nor when, as she never indicated to us that it was bothering her. For all we know, she could have been walking on it for awhile before she complained and before we noticed.
Unfortunately, the brace has helped but after a long day of walking or being out and about, it is often swollen again. So today we went to the Orthopaedic doctor and after the X-Rays showed nothing broken, he felt like the next step was an MRI. Which in itself, will be an experience. Lindsay would not sit still in a confined space for 45 minutes, so we need to go to the hospital and have what they call "conscious sedation". We will know then what the next course of action will be, which brings many questions to my mind. Crutches, no way. Wheel chair, oh my, we might not ever get her out of it! :). Surgery? Recovery? Her understanding of the process, the pain, being careful not to re-injure, etc.
We will just wait and see. But today I was reminded of her pain tolerance as the doctor picked up her knee, laid it out straight, bent it and rotated it around to see when and if she expressed any discomfort. Was she, or was she not, it is so hard to tell. And if she was in pain, bless her little heart, she didn't even show it!
Tuesday, October 12, 2010
Lindsay is our little "post it" note
If we need a reminder to do something, go somewhere, get something at the store, we have our own little "post it" note !
She is amazing at remembering things, people and our routine! She watches, she listens and remembers for us, usually without our asking for help. She can watch my routine of cooking pasta, for example and knows that I need the pasta strainer, the special pasta spoon, the hot pad and most importantly, the parmesan cheese and she gets them out before I need them. She will listen to a conversation about what needs to be done during the day or what I have planned and if she hasn't seen those things happen, she reminds me. I will often "think out loud" and she hears those thoughts, takes notes in her mind and reminds me as if I had just written those same thoughts down on a "post it" note!
It can be kind of irritating actually but probably more irritating for her when she reminds me and I don't do what I need to do! I will say, "I need to iron those shirts", so like clock work, she reminds me every chance she gets to "iron those shirts" in her special sort of way. I might not actually be ready to iron those shirts but by gosh, she is going to keep on reminding me until I do! She definitely keeps me on track for checking off those "to do" items.
And there are those times when, we are amazed, that without her remembering for us, we would have been without something we needed, forgotten things at the store, or had to make special trips. She knows where I put my keys, when I have no clue. She remembers that I forgot to put my earrings on that were laying on the dresser. She will remind me at the store I forgot something I said we needed. And usually, she can't say the actual word but somehow gets me to understand the item I am missing!
This morning, my sister, Wendi and I were enjoying a cup of coffee and she said "I just need to go upstairs before I leave and brush my teeth". Time passed, we were saying our goodbyes before her drive back to Denver and Lindsay pops up and gives her the sign language for brushing teeth. Wendi and I looked at each other and just smiled in amazement. Thanks Linds for reminding us of the little duties we can't seem to remember ourselves!
She is amazing at remembering things, people and our routine! She watches, she listens and remembers for us, usually without our asking for help. She can watch my routine of cooking pasta, for example and knows that I need the pasta strainer, the special pasta spoon, the hot pad and most importantly, the parmesan cheese and she gets them out before I need them. She will listen to a conversation about what needs to be done during the day or what I have planned and if she hasn't seen those things happen, she reminds me. I will often "think out loud" and she hears those thoughts, takes notes in her mind and reminds me as if I had just written those same thoughts down on a "post it" note!
It can be kind of irritating actually but probably more irritating for her when she reminds me and I don't do what I need to do! I will say, "I need to iron those shirts", so like clock work, she reminds me every chance she gets to "iron those shirts" in her special sort of way. I might not actually be ready to iron those shirts but by gosh, she is going to keep on reminding me until I do! She definitely keeps me on track for checking off those "to do" items.
And there are those times when, we are amazed, that without her remembering for us, we would have been without something we needed, forgotten things at the store, or had to make special trips. She knows where I put my keys, when I have no clue. She remembers that I forgot to put my earrings on that were laying on the dresser. She will remind me at the store I forgot something I said we needed. And usually, she can't say the actual word but somehow gets me to understand the item I am missing!
This morning, my sister, Wendi and I were enjoying a cup of coffee and she said "I just need to go upstairs before I leave and brush my teeth". Time passed, we were saying our goodbyes before her drive back to Denver and Lindsay pops up and gives her the sign language for brushing teeth. Wendi and I looked at each other and just smiled in amazement. Thanks Linds for reminding us of the little duties we can't seem to remember ourselves!
Wednesday, October 6, 2010
Somedays my patience just isn't there!
Most days I can say that am pretty patient with Lindsay and then there are days like this morning!
It is evening now and in retrospect, my lack of patience was in part, my own fault. I was projecting what I thought was the best onto what I thought Lindsay should do and in turn, it caused turmoil. The more I fought, the more she fought back, and so it goes!
She was almost ready to go "homework" ( her day program) and I was getting her breakfast and lunch ready. I noticed an abundant amount of items she carried from upstairs to take with her for the day. When I looked, there was about six to seven purses, all filled with necessary "papers" ready to go out the door. We all love our purses, but taking six with you to work, just isn't that easy and when she is in a van full of friends, having that much "stuff" can take up a whole seat! I told her she couldn't take them all, which started off the defensive reaction from her. While she was eating breakfast, I tried to be sneaky and I took most of the purses she had and hid them. That wasn't very nice of me, was it? She proceeded to go upstairs to find more to fill her need. (note: Lindsay has lots of purses!) That in turn frustrated me more and I tried changing the direction, that taking that many purses was hard for her to carry and hard on her knee, which she has been wearing a brace on, for over a month. At which point, I looked at the brace and noticed it had slipped below her knee and was very tight. I told her we needed to take it off and change the brace, for which she said, no! She let me re-adjust it but wasn't about to let me take it off! Thus, more frustration, more lack of patience from me, which raised my voice level, which caused resistance on her part, which didn't solve either of our problems!
I have learned and re-learned that just walking away can be the best solution. She went to the front room with her purses, I cleaned up the kitchen and soon the van arrived. I walked her to the van, said my hellos to everyone and she found her seat in the van along side her 4 purses and lunch box. Yes, I was still frustrated but as the day went on, I thought about the morning and the impact it had. Was it worth it? Did it really matter if she took 4 or 6 or 8 purses to work? Although you and I wouldn't probably take that many purses with us for the day, she isn't us. Maybe it gives her comfort taking all that she loves with her for the day. Maybe she fills closer to home with them. Or maybe, she really actually needs all those 6 purses!
The day has turned to evening and soon it will be bedtime and in the whole scheme of things, it didn't really matter that she had all those things with her. She always seems to manage just fine, holding all those treasures! It made me realize that in our daily lives, we are sometimes quick to push our way of doing things onto others, our reasoning for why others should or shouldn't, when in reality, each of has our own valid reasons for the things we like to do. I am not saying it won't bother me seeing her take all those purses with her and as long as she carries them all and they don't become someone elses burden, then go for it, Lindsay!
Please remind me of this tomorrow morning when I see an abundant amount of purses going out the door tomorrow! :)
It is evening now and in retrospect, my lack of patience was in part, my own fault. I was projecting what I thought was the best onto what I thought Lindsay should do and in turn, it caused turmoil. The more I fought, the more she fought back, and so it goes!
She was almost ready to go "homework" ( her day program) and I was getting her breakfast and lunch ready. I noticed an abundant amount of items she carried from upstairs to take with her for the day. When I looked, there was about six to seven purses, all filled with necessary "papers" ready to go out the door. We all love our purses, but taking six with you to work, just isn't that easy and when she is in a van full of friends, having that much "stuff" can take up a whole seat! I told her she couldn't take them all, which started off the defensive reaction from her. While she was eating breakfast, I tried to be sneaky and I took most of the purses she had and hid them. That wasn't very nice of me, was it? She proceeded to go upstairs to find more to fill her need. (note: Lindsay has lots of purses!) That in turn frustrated me more and I tried changing the direction, that taking that many purses was hard for her to carry and hard on her knee, which she has been wearing a brace on, for over a month. At which point, I looked at the brace and noticed it had slipped below her knee and was very tight. I told her we needed to take it off and change the brace, for which she said, no! She let me re-adjust it but wasn't about to let me take it off! Thus, more frustration, more lack of patience from me, which raised my voice level, which caused resistance on her part, which didn't solve either of our problems!
I have learned and re-learned that just walking away can be the best solution. She went to the front room with her purses, I cleaned up the kitchen and soon the van arrived. I walked her to the van, said my hellos to everyone and she found her seat in the van along side her 4 purses and lunch box. Yes, I was still frustrated but as the day went on, I thought about the morning and the impact it had. Was it worth it? Did it really matter if she took 4 or 6 or 8 purses to work? Although you and I wouldn't probably take that many purses with us for the day, she isn't us. Maybe it gives her comfort taking all that she loves with her for the day. Maybe she fills closer to home with them. Or maybe, she really actually needs all those 6 purses!
The day has turned to evening and soon it will be bedtime and in the whole scheme of things, it didn't really matter that she had all those things with her. She always seems to manage just fine, holding all those treasures! It made me realize that in our daily lives, we are sometimes quick to push our way of doing things onto others, our reasoning for why others should or shouldn't, when in reality, each of has our own valid reasons for the things we like to do. I am not saying it won't bother me seeing her take all those purses with her and as long as she carries them all and they don't become someone elses burden, then go for it, Lindsay!
Please remind me of this tomorrow morning when I see an abundant amount of purses going out the door tomorrow! :)
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