I've missed a week. )-: I'll catch up . . .
McKenna actually missed her therapy session last week because she came down with another cold. Right before I was due to leave for Vancouver too. That week leading up to my trip McKenna really started putting two words together! We think she has around 50 words now. Ms. T. explained that is the magic number for kids to start putting two words together. Suddenly McKenna had so many two word combinations within her 50 words that I couldn't keep track. It was so exciting!
She did fine while I was gone. The mornings were the hardest for her. She would wake up and cry and look for me. )-: After that though she went through her days and even nights fairly happily and normally.
McKenna continues to really struggle with articulation with most of her 50 words. Very few of them are intelligible to strangers. I know this will come later. I just continue to be sobered by how far she has to go, how slow it is and how hard she has to work.
She had two sessions this week to make up for last week. Tuesday she did well and worked pretty hard. At one point though she was really visibly groping with her mouth moving and twisting and no sound coming out. Her problems are most obvious when she is excited, motivated and trying her hardest. That is so hard for me to see. A lot of the time (like today) in therapy- she refuses to speak, by pursing her lips if she has to work. If she's not excited about the game or toy we are using for incentive she refuses to play. Today we were making Santa faces. Cole got his plate, eyes, cotton balls etc... McKenna only performed for the eyes, so she sat and forlornly watched Cole put his Santa together. Her shoulders were slumped, she would reach for everything, but as soon as Ms. T. made it clear she had to say something for it she just sat passively.
I was really frustrated and discouraged today. She was even refusing to say stuff I know and even more important "she knows" she can say. We worked for 20 minutes to get her to say something she can already say. That is discouraging. Ms. T. feels that the novelty and fun of therapy is wearing off and now we are also dealing with some attitude. She does *NOT* want to frustrate McKenna. She wants this to be as fun and rewarding as possible. She works so hard to build McKenna up and encourage her. However if she asks McKenna to do something and she doesn't do it her policy is to follow through in making McKenna obey that request in some way. The end could be that she resorts to asking McKenna for only a sign and then if she won't do that then she says,"ok- then I'll help you." Then she takes McKenna's hands and forces the sign. She does not treat McKenna as if she is in trouble she just calmly and patiently follows through. She asked me if I was "cool" with this and I wholeheartedly am! Ms. T. really wants to find the right balance for McKenna in how hard we make her work. So do I!
It's just hard because she is 2 and a half. Your 2 year old isn't supposed to have to work like this. In my mind her days should be full of fun, growing and play with a bit of clean up. It's a hard pill to swallow to know that she is going to be working so hard for years possibly- just to speak intelligibly.
Another thing that is hard lately is McKenna does this thing where she gets stuck, like a broken record- on something she is saying. Then she says it loudly, over and over and over. It drives Cole INSANE! He gets so agitated and upset. He starts yelling at her to be quiet and he starts crying and asking why does she just keep saying that? It's especially bad when she's directing it at him. The other day she yelled, "NO MIEE" (no mine) at him for 15 minutes. After the first 2 times he had already given her what she wanted and she just kept standing there yelling it over and over. I tried to distract her, but that didn't work. I do not feel like I can discipline her as it is totally neurological. She is literally programing her brain to yell "no mine" and I don't want to stop that. I ended up having to remove Cole from the situation as much as possible. I want him to learn to ignore her when she does that.
It happens every day. As Cole screams and cries for her to stop, she just stands there looking a bit upset saying "whatever" over and over.
Any ideas about how to deal with this? I mean she could be saying "yai pees" (yes please) over and over and it still makes Cole crazy and upset. I have done my best to explain to him McKenna has issues, McKenna cannot talk like you and me, McKenna is trying to fix her brain, McKenna is practicing her speech... The fact remains Cole can't handle it. This is a problem.
We are starting to use more signs in therapy. Children's Mercy recommended that and also some of you who are following this blog. I feel it is a very good idea to pursue that more. The signs do seem to act as a trigger for McKenna's brain. They often seem to help her get the word out and they help with articulation.
We are going to pursue Sensory Integration Therapy for McKenna. It snowed for the first time this season last week. I took her out in it and she cried, whined, moaned and sometimes screamed the entire time she was out there. She couldn't stand to walk in it, touch it, have it on her boots, gloves, coat, snow pants... It was pretty dramatic. We stayed out for over 30 minutes and it never got better. I even let Cole stay out after we went back in and she was perfectly content to watch him and not join him! That's crazy . . .
I wrote a letter about the kids for everyone helping with them while I was away. I'll post some sections about McKenna next time. This post has gotten too long.
Love,
Amber
Wednesday, December 16, 2009
Thursday, December 3, 2009
Isn't It Ironic
Dave and I were talking yesterday about how ironic McKenna's diagnosis is. Anyone that knows me knows I'm a talker . . . a big talker . . . I can talk and talk and talk. I love to communicate, it's one of my strengths, it's a huge security for me. I also love to listen to other people talk. I love people and I love connecting. To communicate and listen well brings you success in life.
For a brief second here and there I can appreciate the irony and have a little humor about the fact that I could have a daughter who can't talk! What??
So in the middle of our conversation Dave knocked me in the arm and said, "yeah- sometimes I wish YOU had verbal dyspraxia!" I hit him and laughed.
My laugh, however is only skin deep. The corners of my mouth turn up, sound comes out, but my eyes are not laughing. My heart is not laughing.
I cannot imagine a world where simply speaking is difficult. I guess I put a lot of my security in that power. I sense that a whole new world is about to open up for me. A world in which McKenna is supposed to be the recipient of growth, but hopefully I will be a better person for this. I know in my head that there is so much more to communication then words, but my heart has not learned this lesson yet.
I am looking forward to this journey . . . I am.
Love,
Amber
For a brief second here and there I can appreciate the irony and have a little humor about the fact that I could have a daughter who can't talk! What??
So in the middle of our conversation Dave knocked me in the arm and said, "yeah- sometimes I wish YOU had verbal dyspraxia!" I hit him and laughed.
My laugh, however is only skin deep. The corners of my mouth turn up, sound comes out, but my eyes are not laughing. My heart is not laughing.
I cannot imagine a world where simply speaking is difficult. I guess I put a lot of my security in that power. I sense that a whole new world is about to open up for me. A world in which McKenna is supposed to be the recipient of growth, but hopefully I will be a better person for this. I know in my head that there is so much more to communication then words, but my heart has not learned this lesson yet.
I am looking forward to this journey . . . I am.
Love,
Amber
Monday, November 30, 2009
"I Dance" And Children's Mercy Evaluation
We had a wonderful Thanksgiving. We drove to Columbia where Uncle Brian and Aunt Lisa hosted dinner. McKenna slept a lot of the way there and was completely overloaded and overwhelmed for the first couple hours after we got there. The house was big, lots of noise, 3 dogs and 30 people! After an hour or two she adjusted and did awesome.
The highlight was definitely late evening cousin Curtis played his fiddle with Pa (dad) playing the guitar. McKenna loved the live music. She and Cole danced and danced. She was so excited about it that whenever they finished a song she would say and sign "mooore" in the silence in front of everybody. That is big for her. She does not like to speak in front of people. She also was saying "ah dence" (I dance!)over and over as she twirled, jumped, swayed and kicked her legs. It was so precious!
Today was McKenna's evaluation with Children's Mercy Hospital for hearing and speech. There were no surprises today. That is good- I guess in some ways, but bad/sad in others...
McKenna's hearing was determined to be normal. That *is* good news.
I was not expecting, but perhaps I was hoping that maybe we had jumped the gun with McKenna's "Verbal Dyspraxia" diagnosis. Unfortunately the SLP today does *not* think so. She wrote- probable "Developmental Verbal Apraxia" on her paper. That is not what I wanted to hear. Obviously I wasn't surprised at all, but receiving that diagnosis for the 2nd time now and this time in a very respected hospital clinic has really hit me harder than I thought it would.
Also seeing this on her paper about McKenna:
Expressive Language Disorder - check mark followed by the word, "severe".
Articulation/Phonological Disorder- check mark followed by "severe; probable Apraxia"
Oral Motor Difficulties- check mark followed by "decreased range of motion"
Seeing that written on paper is just hard.
What is even harder is reading the papers she gave to me entitled:
"Letters to the parents of a child with Developmental Apraxia of Speech"
Some parts that jumped out at me:
First of all it was explained that children with DAS can be mildly to severely affected. (Note from me- The "severe" above- refers to her speech and language disorder *not* to her Apraxia. It's severe enough that it points towards "Apraxia". The severity of her Apraxia is yet to be determined..) Everyone who has looked at McKenna thinks she does have some good things going for her. She is verbal. But no one knows for sure what her future holds. The SLP today says she does think McKenna will be a verbal communicator. I'm glad she thinks that. She said McKenna could need pretty intense therapy for 2 to 10 years! Yes-- I said 10 years!!!
I read this in one of the letters:
" Many parents express concern about what the future holds for their child after the diagnosis of DAS has been made. I had the opportunity to follow children with DAS into their mid-20's. As a result of these experiences, it appears that we need to think of DAS as a lifelong communication problem." . . . .
After the "I had the opportunity..." sentence I was hoping to read something VERY different about what the experience of following kids with DAS into their mid-20's has shown. Instead- there it is: like a slap in the face- "a lifelong communication problem" . . .
More on prognosis:
" The eventual results are affected by a number of factors. The most important factors may well be the severity of the problem itself, and the type and length of the remedial services the child receives.... However, the attainment of totally "normal' speech skills may be unrealistic."
Lets hope and pray this is McKenna:
"Children with less severe DAS may well reach a level where they seem to make few, if any, speech errors. However the child and the family need to be counseled that they should not be surprised if DAS-type errors occur occasionally, particularly when the child (and later teenager and adult) is in a stressful speaking situation, is in a situation requiring a great deal of talking, or is tired."
Am I still trying to wriggle out of this diagnosis? Is there still hope that McKenna does not have DAS. Yes a tiny sliver of hope. I asked the SLP today if it's possible we are wrong. She said it's still possible McKenna could surprise us. She is still very young and only has about 50 or 60 words. That is not a huge sample of speech to make a diagnosis, but she said, "surprise". Meaning it would be "surprising" if it turns out McKenna does *not* have DAS. She said we will know within a year.
I know it has been hard and confusing for friends and even family to understand what the big deal is, what all the concern is about. Lots of kids don't talk until age 3. Lots of kids have speech issues, it's not usually a problem later on etc...
All I can say is that there are many types of speech disorders and delays, most of which are resolved to normalcy early on. DAS is one of the worst diagnosis you can get as far as speech issues go. There are many specific characteristics that point towards DAS and now two different organizations of professionals have recognized these characteristics in McKenna and have given her the DAS diagnosis.
I am well practiced at research and diagnosis myself even without professional training on many different subjects. When looking for answers for my daughter before I ever sought out the input of professionals, I too- felt that DAS was the most likely explanation for her particular signs and symptoms as related to her speech. It took me days to figure that out though. The sheer magnitude of speech delays and disorders, their characteristics and symptoms were very overwhelming to sort through. Especially without any training on the subject. After 3 days when I finally stumbled across a description of DAS my heart dropped to my toes, as I said before, this was describing my daughter.
I'd love to be wrong! I'd love it if Ms. T. is wrong, if the whole First Steps team is wrong... I'd love it if the SLP with Children's Mercy is wrong . . . .
Unfortunately as time goes by, as she receives more therapy, as she gets older, as more and more people concur . . . the less likely it is- that we are all wrong.
For my sanity and for the purposes of helping McKenna in every way possible I am choosing to accept this as her diagnosis and operate accordingly.
Prayers are always appreciated!
Love,
Amber
The highlight was definitely late evening cousin Curtis played his fiddle with Pa (dad) playing the guitar. McKenna loved the live music. She and Cole danced and danced. She was so excited about it that whenever they finished a song she would say and sign "mooore" in the silence in front of everybody. That is big for her. She does not like to speak in front of people. She also was saying "ah dence" (I dance!)over and over as she twirled, jumped, swayed and kicked her legs. It was so precious!
Today was McKenna's evaluation with Children's Mercy Hospital for hearing and speech. There were no surprises today. That is good- I guess in some ways, but bad/sad in others...
McKenna's hearing was determined to be normal. That *is* good news.
I was not expecting, but perhaps I was hoping that maybe we had jumped the gun with McKenna's "Verbal Dyspraxia" diagnosis. Unfortunately the SLP today does *not* think so. She wrote- probable "Developmental Verbal Apraxia" on her paper. That is not what I wanted to hear. Obviously I wasn't surprised at all, but receiving that diagnosis for the 2nd time now and this time in a very respected hospital clinic has really hit me harder than I thought it would.
Also seeing this on her paper about McKenna:
Expressive Language Disorder - check mark followed by the word, "severe".
Articulation/Phonological Disorder- check mark followed by "severe; probable Apraxia"
Oral Motor Difficulties- check mark followed by "decreased range of motion"
Seeing that written on paper is just hard.
What is even harder is reading the papers she gave to me entitled:
"Letters to the parents of a child with Developmental Apraxia of Speech"
Some parts that jumped out at me:
First of all it was explained that children with DAS can be mildly to severely affected. (Note from me- The "severe" above- refers to her speech and language disorder *not* to her Apraxia. It's severe enough that it points towards "Apraxia". The severity of her Apraxia is yet to be determined..) Everyone who has looked at McKenna thinks she does have some good things going for her. She is verbal. But no one knows for sure what her future holds. The SLP today says she does think McKenna will be a verbal communicator. I'm glad she thinks that. She said McKenna could need pretty intense therapy for 2 to 10 years! Yes-- I said 10 years!!!
I read this in one of the letters:
" Many parents express concern about what the future holds for their child after the diagnosis of DAS has been made. I had the opportunity to follow children with DAS into their mid-20's. As a result of these experiences, it appears that we need to think of DAS as a lifelong communication problem." . . . .
After the "I had the opportunity..." sentence I was hoping to read something VERY different about what the experience of following kids with DAS into their mid-20's has shown. Instead- there it is: like a slap in the face- "a lifelong communication problem" . . .
More on prognosis:
" The eventual results are affected by a number of factors. The most important factors may well be the severity of the problem itself, and the type and length of the remedial services the child receives.... However, the attainment of totally "normal' speech skills may be unrealistic."
Lets hope and pray this is McKenna:
"Children with less severe DAS may well reach a level where they seem to make few, if any, speech errors. However the child and the family need to be counseled that they should not be surprised if DAS-type errors occur occasionally, particularly when the child (and later teenager and adult) is in a stressful speaking situation, is in a situation requiring a great deal of talking, or is tired."
Am I still trying to wriggle out of this diagnosis? Is there still hope that McKenna does not have DAS. Yes a tiny sliver of hope. I asked the SLP today if it's possible we are wrong. She said it's still possible McKenna could surprise us. She is still very young and only has about 50 or 60 words. That is not a huge sample of speech to make a diagnosis, but she said, "surprise". Meaning it would be "surprising" if it turns out McKenna does *not* have DAS. She said we will know within a year.
I know it has been hard and confusing for friends and even family to understand what the big deal is, what all the concern is about. Lots of kids don't talk until age 3. Lots of kids have speech issues, it's not usually a problem later on etc...
All I can say is that there are many types of speech disorders and delays, most of which are resolved to normalcy early on. DAS is one of the worst diagnosis you can get as far as speech issues go. There are many specific characteristics that point towards DAS and now two different organizations of professionals have recognized these characteristics in McKenna and have given her the DAS diagnosis.
I am well practiced at research and diagnosis myself even without professional training on many different subjects. When looking for answers for my daughter before I ever sought out the input of professionals, I too- felt that DAS was the most likely explanation for her particular signs and symptoms as related to her speech. It took me days to figure that out though. The sheer magnitude of speech delays and disorders, their characteristics and symptoms were very overwhelming to sort through. Especially without any training on the subject. After 3 days when I finally stumbled across a description of DAS my heart dropped to my toes, as I said before, this was describing my daughter.
I'd love to be wrong! I'd love it if Ms. T. is wrong, if the whole First Steps team is wrong... I'd love it if the SLP with Children's Mercy is wrong . . . .
Unfortunately as time goes by, as she receives more therapy, as she gets older, as more and more people concur . . . the less likely it is- that we are all wrong.
For my sanity and for the purposes of helping McKenna in every way possible I am choosing to accept this as her diagnosis and operate accordingly.
Prayers are always appreciated!
Love,
Amber
Thursday, November 19, 2009
Fighting Discouragement
My beautiful girl!
I am feeling a bit discouraged the last couple of days. There is really not a big reason why, perhaps not even a "good" reason.
She had two therapy sessions this week because we made up for the week she was sick. Ms. T. thinks she's doing great. She is . . . she is adding new words weekly, she is getting more accurate with her attempts, she is much more easily saying two short words together now- like, "bye pa", "ni ni bebe", bye momma", "ni ni daddy" . . . basically "bye...." and "ni....." followed by a name are her two word attempts.
The things I'm discouraged about are "emotional" in McKenna. She seems really frustrated again the last few days. Almost like her brain, her understanding level has gone up another notch leaving her ability to commnuicate further behind. I always notice these cognitive jumps in my children at times and I think she's had one and her communcation has not really jumped and it's really frustrating her. Or perhaps the cognitive jump has just brought more awareness of her deficits, I don't know. She was just very shy and reticient to say "anything" that she didn't feel she could say accurately with Ms. T. this week. This left her only saying words she can already say and basically refusing to even try anything new because she does not want to try and fail. I can just see it in her body. When you ask her to say something she hasn't ever successfully said her body languge just looks defeated. It breaks my heart and it frustrates me because that will only move things along much slower.
She did try a few new things and did have success with "puppy" during therapy which was great. I have been trying to get her to say that for a week. She now will happily say it. But when it takes a week for my soon to be 2 1/2 year old to say the word "puppy" it just . . . well . . . discourages me. Ms. T. did make the comment that it's almost like you have to program every single word with McKenna. After it's been successfully programed she seems to keep it. I guess that is good that she keeps it, but programing painstakingly sometimes a week at a time enough words for her to have an age appropriate conversation seems like an impossibility.
I feel like the older she gets, the smarter she gets the harder this is and I was hoping it would be the other way around.
I have been trying to get her to say "bed" and "sleep", but the smart little stinker will not even try. Instead she inserts an appropriate word that she knows she can say that she knows will communicate the same thing- "ni ni" . . .
It's theraputic for me to spill these negative feelings out here. I'd rather do that then dwell on them or even really talk about them. So if you are reading and praying - thanks! (-:
I know in my head she's not doing badly at all. Ms. T. thinks she's doing GREAT! Sometimes my heart just hurts though...
Love,
Amber
Friday, November 13, 2009
Setback
McKenna did have her therapy on Wednesday, but she still had a little runny nose. Thursday and today her nose has been running horribly again. Every time she gets sick it seems like it takes for EVER for her to get over it. My brother Evan checked her pulses (per-TKM energy method) tonight and told me to apply a #17 sequence on her. I just finished doing that and she was breathing and sleeping easily.
I've got to try to do more TKM on her. Watching Jimmie go through 2 viruses in 2 weeks and do absolutely amazing has made me jealous for McKenna. The only explanation I can see is that he gets TKM applied 3 or 4 times a week! He's a 5 1/2 month old (adjusted age) 24 week preemie for goodness sakes and is kicking my daughter's full term 2 year old booty in how he's handled sickness.
McKenna being sick for "going on" 2 weeks now has set her back with her speech. She has reverted to lots of frustrated "uuuuuuuhhhhing" and whining.
She did not do bad with therapy on Wednesday, but she was very reserved, shy and self conscious again. She kept looking insecurely back at me before she'd try to speak and she hid her face in my shirt a few times. Ms. T. picked up on everything immediately and was very sweet and sensitive with her. McKenna also spoke in a very high voice or almost a whisper a lot of the time. Nothing breaks my heart more than seeing my 2 year old daughter insecure like that. I really really hate that part of this whole issue. A 2 year old should not be having this sort of angst!
Today she did better and I was able to remind her when she was "uuuuuuuhhhhhing" to use her words and she would. Tonight she started trying to tell her baby doll "night night" as she was going to sleep. She worked at it until she got "ni ni bebe" and then she very excitedly said that over and over and over and then for some reason she lost it. She started saying, "bebo" for "baby". It upset her and she kept trying and trying to get it back. She would get "bebe" and then try the "ni ni" and either the "ni ni" would turn to "ni mi" or the "be be" would turn to "bebo". It was sad and I could see the confusion and frustration in her face. She did smile about it and keep trying though. I think she said it right twice and then stopped and fell almost instantly asleep.
Ms. T. has noticed as have I that when McKenna decides she wants to say something on her own she will work really hard until she gets it right- or at least close and then she drill it herself by saying it over and over and over. She literally gets stuck like a broken record. It's interesting though because most experts do believe it is through "drilling" that kids with Dyspraxia learn to speak. So she innately does what she needs to do. It's like she's trying to create a groove in her brain for each new word or each new 2 word combination.
The other thing we've noticed is that periodically during therapy and at times when we are trying to get McKenna to say something she suddenly completely "checks out". Her eyes stare off, but not seeing and she is perfectly still, almost frozen. Then she snaps out of it and makes speech attempts again. Ms. T. doesn't think it's anything to worry about, but she wants us to sit very still and quiet when McKenna does that and wait for her to come back. Ms. T. describes it as "computing time".
Ms. T. wants us to put McKenna on fish oil. I have some here and I'm going to start making her slushies and sneaking it in. (-: I know one of you "M" anynomous posted about starting her on fish oil as well. I'm excited about how this might help her brain.
Thank you for your prayers!
Love,
Amber
P.S. Bronwyn I emailed you back. I can't find your comment?? I would love Elliot's web page. It would be nice to start linking other blogs about kids dealing with Dyspraxia. Try commenting again or email me back!
I've got to try to do more TKM on her. Watching Jimmie go through 2 viruses in 2 weeks and do absolutely amazing has made me jealous for McKenna. The only explanation I can see is that he gets TKM applied 3 or 4 times a week! He's a 5 1/2 month old (adjusted age) 24 week preemie for goodness sakes and is kicking my daughter's full term 2 year old booty in how he's handled sickness.
McKenna being sick for "going on" 2 weeks now has set her back with her speech. She has reverted to lots of frustrated "uuuuuuuhhhhing" and whining.
She did not do bad with therapy on Wednesday, but she was very reserved, shy and self conscious again. She kept looking insecurely back at me before she'd try to speak and she hid her face in my shirt a few times. Ms. T. picked up on everything immediately and was very sweet and sensitive with her. McKenna also spoke in a very high voice or almost a whisper a lot of the time. Nothing breaks my heart more than seeing my 2 year old daughter insecure like that. I really really hate that part of this whole issue. A 2 year old should not be having this sort of angst!
Today she did better and I was able to remind her when she was "uuuuuuuhhhhhing" to use her words and she would. Tonight she started trying to tell her baby doll "night night" as she was going to sleep. She worked at it until she got "ni ni bebe" and then she very excitedly said that over and over and over and then for some reason she lost it. She started saying, "bebo" for "baby". It upset her and she kept trying and trying to get it back. She would get "bebe" and then try the "ni ni" and either the "ni ni" would turn to "ni mi" or the "be be" would turn to "bebo". It was sad and I could see the confusion and frustration in her face. She did smile about it and keep trying though. I think she said it right twice and then stopped and fell almost instantly asleep.
Ms. T. has noticed as have I that when McKenna decides she wants to say something on her own she will work really hard until she gets it right- or at least close and then she drill it herself by saying it over and over and over. She literally gets stuck like a broken record. It's interesting though because most experts do believe it is through "drilling" that kids with Dyspraxia learn to speak. So she innately does what she needs to do. It's like she's trying to create a groove in her brain for each new word or each new 2 word combination.
The other thing we've noticed is that periodically during therapy and at times when we are trying to get McKenna to say something she suddenly completely "checks out". Her eyes stare off, but not seeing and she is perfectly still, almost frozen. Then she snaps out of it and makes speech attempts again. Ms. T. doesn't think it's anything to worry about, but she wants us to sit very still and quiet when McKenna does that and wait for her to come back. Ms. T. describes it as "computing time".
Ms. T. wants us to put McKenna on fish oil. I have some here and I'm going to start making her slushies and sneaking it in. (-: I know one of you "M" anynomous posted about starting her on fish oil as well. I'm excited about how this might help her brain.
Thank you for your prayers!
Love,
Amber
P.S. Bronwyn I emailed you back. I can't find your comment?? I would love Elliot's web page. It would be nice to start linking other blogs about kids dealing with Dyspraxia. Try commenting again or email me back!
Sunday, November 8, 2009
It's Not Like That, But Thanks
Most of the time I remain encouraged and excited about McKenna's speech and her progress, but every once a while I feel a little down and overwhelmed.
Friday we were at a park playing and there was a little girl who acted McKenna's age running around. At one point her mom said, "ok- it's about time to go. We are going to go over to grandma's..." Then the little girl said, "nooo I don't want to go, I want to keep playing." Those words just flowed so effortlessly out of her mouth. They were so clear and understandable. She expressed herself without a struggle without even thinking about it.
I looked at her mom and asked, "how old is she?" the answer, "she just turned 2 a few days ago." I said, "oh, my daughter is 2 as well." This mother looked at my daughter and then looked at hers and said with a sigh, "my daughter is so small for her age." She *was* small compared to McKenna, but McKenna is really almost 2 1/2. So I said, "yeah, well my daughter can't speak, your daughter is doing great with that!" We smiled at each other and then she said, "My nephew wouldn't speak at all. He just didn't want to. Finally at 2 1/2 or 3 he just started talking. They will talk when they want to, don't you worry about it." I just smiled and didn't say anything.
This exact conversation has happened to me so many times since this summer. With family, friends and strangers. The story is always the same, " . . . so and so didn't say a word until they were 3. They just didn't want to, didn't need to."
This is my own little brother's story. He didn't speak until 3 years old.
I say "thanks" because everyone's heart is to comfort me and encourage me, but unfortunately- it's not like that. McKenna *does* want to speak, *tries* to speak. She tries SO HARD. However she can hardly be understood by a stranger and I have to work very hard and be very observant to understand her myself. We get so excited over "bye bye Pa" and "Ni ni Cole". Don't get me wrong I am still so excited and grateful for how far she's come, but sometimes I can't help but compare with her peers and that is when it hurts.
I don't want McKenna to feel sorry for herself. I don't want her to feel bad about herself. So I will strive not to compare and not dwell on these feelings. We need to set an example in that for her.
It helps that I can let this out here though . . . McKenna has so much to say, so much she wants to express and share about herself, her likes and dislikes, her imagination, her desires, her delight. Sometimes when she's excitedly, but laboriously trying to express something to me and I don't understand 1 word she is saying it's all I can do to smile and hold back my tears. McKenna in a lot of ways is still a mystery to us. That breaks my heart a little every day. I have thought of the deaf and specifically of Helen Keller's tragic, but beautiful and eventually victorious story a lot lately. I find myself thinking of my cousin Camilla who though she can hear and speak perfectly has chosen to be fluent in sign language and works long hours as an interpreter for the deaf. Her heart and desire to facilitate communication is so needed and so important. I will never ever take the power of communication for granted ever again.
Thank you for your prayers!
Love,
Amber
Friday we were at a park playing and there was a little girl who acted McKenna's age running around. At one point her mom said, "ok- it's about time to go. We are going to go over to grandma's..." Then the little girl said, "nooo I don't want to go, I want to keep playing." Those words just flowed so effortlessly out of her mouth. They were so clear and understandable. She expressed herself without a struggle without even thinking about it.
I looked at her mom and asked, "how old is she?" the answer, "she just turned 2 a few days ago." I said, "oh, my daughter is 2 as well." This mother looked at my daughter and then looked at hers and said with a sigh, "my daughter is so small for her age." She *was* small compared to McKenna, but McKenna is really almost 2 1/2. So I said, "yeah, well my daughter can't speak, your daughter is doing great with that!" We smiled at each other and then she said, "My nephew wouldn't speak at all. He just didn't want to. Finally at 2 1/2 or 3 he just started talking. They will talk when they want to, don't you worry about it." I just smiled and didn't say anything.
This exact conversation has happened to me so many times since this summer. With family, friends and strangers. The story is always the same, " . . . so and so didn't say a word until they were 3. They just didn't want to, didn't need to."
This is my own little brother's story. He didn't speak until 3 years old.
I say "thanks" because everyone's heart is to comfort me and encourage me, but unfortunately- it's not like that. McKenna *does* want to speak, *tries* to speak. She tries SO HARD. However she can hardly be understood by a stranger and I have to work very hard and be very observant to understand her myself. We get so excited over "bye bye Pa" and "Ni ni Cole". Don't get me wrong I am still so excited and grateful for how far she's come, but sometimes I can't help but compare with her peers and that is when it hurts.
I don't want McKenna to feel sorry for herself. I don't want her to feel bad about herself. So I will strive not to compare and not dwell on these feelings. We need to set an example in that for her.
It helps that I can let this out here though . . . McKenna has so much to say, so much she wants to express and share about herself, her likes and dislikes, her imagination, her desires, her delight. Sometimes when she's excitedly, but laboriously trying to express something to me and I don't understand 1 word she is saying it's all I can do to smile and hold back my tears. McKenna in a lot of ways is still a mystery to us. That breaks my heart a little every day. I have thought of the deaf and specifically of Helen Keller's tragic, but beautiful and eventually victorious story a lot lately. I find myself thinking of my cousin Camilla who though she can hear and speak perfectly has chosen to be fluent in sign language and works long hours as an interpreter for the deaf. Her heart and desire to facilitate communication is so needed and so important. I will never ever take the power of communication for granted ever again.
Thank you for your prayers!
Love,
Amber
Friday, November 6, 2009
Sick
McKenna got sick Halloween night. She didn't sleep much Saturday night. Sunday afternoon and all night long she ran a fever close to 102. Monday night she ran a fever as well. Now she has lots and lots of snot and a mild cough. Poor baby.
Consequently we had to cancel her speech therapy this week. )-: We were all pretty bummed about that. Ms. T. said we will try to make it up though by having 2 sessions in one week.
McKenna has still made progress this week! Cole has been telling "knock knock" jokes all week. So Kenna has worked very hard on "knock knock". It usually sounds like "Knock guck", Then she'll say, "who who"? For "who's there?" (-: It's crazy cute!
She is saying "please" all the time now. It's basically the word she now uses to ask for anything. I'd rather her attempt to say the object that she wants, but "pease??" is better than "uuuuuhhh". She says it so sweetly and it's so polite it's hard to ever tell her "no". 0-:
She's been really in to helping me in the kitchen this week as well. Everything- cooking, loading the dishwasher, cleaning the floors- she wants to be right in there hands on. Yesterday she helped me cook dinner and when it became clear to her it was done she went into the living room and proudly called Cole in to dinner. She very clearly said, "Cole eat!" Cole and I were so excited! She acted very nonchalant about it though. I really am loving her new level of confidence about her self and her ability to communicate. She is really blossoming from a quiet, frustrated and embarrassed little girl to confident, determined and sweet. She has gained a sense of humor about herself and her speech and most of the time is able to laugh with us at her mistakes instead of clamming up in embarrassment. I am so thankful!
Thank you for your care and prayers!
Love,
Amber
Thursday, October 29, 2009
Happy Tears
McKenna's therapy went well yesterday. Since it is the end of the month Ms. T. likes to review the month and discuss any concerns and improvements. As we talked and she looked at her notes we realized how far McKenna has come in just a month. She has added *many* single words. She has also started finishing her words. (all on her own) In fact McKenna works on her speech herself all of the time. I really feel that Ms. T. is providing her with focus and tools to help organize her speaking attempts and McKenna has taken those and is applying them.
She still has an insanely hard time putting two words together. Even something easy like, "bye bye Pa" is too hard. However a few days ago she managed, "ni ni daddy" (night night daddy) for the first time! And then last night she said, "ni ni COLE"!!!
She loves her brother so much and he just ADORES her. To hear her respond to his, "night night Kenna" with "ni ni Cole" was so magical! Cole was just so thrilled he sat up and clasped his hands to his chest and said, "mommy ooooooohh did you hear Kenna just said ni ni Cole she said my name!!!" I was cheering, McKenna was smiling so big. Then the true test (can she do it again?) . . Cole repeated, "night night Kenna" and she again responded, "ni ni Cole" after the 2nd time when she realized she did it again she laughed and laughed with delight. Cole was laughing too. For the next 15 minutes they said, "night night Kenna" "ni ni Cole" to each other followed by delighted laughing. We were in the dark as we really were supposed to be going night night, but I just let them go on and on. I was glad they couldn't see my tears in the dark because it's hard for kids to understand happy tears!
This morning after a bit of coaxing we got McKenna to perform this feat for Ma (my mom). Hearing McKenna put two words together with her brother's name just makes her sound so normal and grown up. It effected my mom the same way. Her eyes filled with tears as we cheered for McKenna.
After listening to McKenna try and sing our bedtime lullaby it always hits me how far we have to go. She somehow not even on accident gets any sound right. Not one consanant, not one vowel through a whole song- until the very end word, "night" . . . Although it's easy to see how far she has to go, today we are thrilled with how far she has come.
I will never forget the pure joy of hearing "ni ni Cole" come out of McKenna's mouth and then hearing the absolute delight and exitement in Cole and Kenna's laughter.
Thank you Lord. (-:
Love,
Amber
Thursday, October 22, 2009
Co And Simplify
McKenna said "Co" yesterday for "Cole". That was definitely the highlight of her therapy time. She had another session where she did well for the first part and completely "checked out" for the last part. Overall she was computing very slowly and getting stuck on words. She had gotten up too early. I don't know if that had anything to do with it or not.
Ms. T. said not to get discouraged that every session will not be like last time and to focus on the good parts of each session.
This week McKenna has been speaking in an organized sentence, but it sounds like this:
"meh meh nuh nuh nuh CHOO CHOO meh nemeh neh mu uhuhuh HOLP!"
That means: "come see- my train fell off the track and I need help putting it back on."
Ms. T. feels it's good that she understands sentences and how they are structured and that she's trying to imitate normal speech, BUT it's bad because McKenna bites off way more than she can chew. She keeps telling me that we all need to speak very simply to McKenna so that she tries to imitate that. I can't figure how I can get Dave and Cole to simplify their languge. Dave maybe, but at age 4- Cole is very articulate and elaborates MUCH and I'm just not sure how to get him to talk simply to McKenna.
McKenna will say, "Uhhhhhh Oooooo" . . . and Cole will translate, "Oh you mean you are scared there is a monster in the closet and you thought you heard him snoring?" (-:
I tried to work on vowels all week with McKenna and it really didn't go well. She would give 1 or 2 tries maybe and then just give up. Ms. T. suggested I try and sneak it in more than outright asking her to say something before I reward her with whatever the incentive. I'll have to take this advice because a lot of the time the incentive isn't working. Meaning she just gives up and decides she doesn't want a cookie that much and walks away. Also I'll take her first or second try and tell her "good trying McKenna" even if it wasn't even close to accurate.
The way I'm supposed to sneak it in is while I'm getting her a cookie I repeat over and over "oo oo oo" "oo oo oo" as I slowly take my time getting it and giving it to her, hoping that she'll be inspired to imitate me. It may take a while before she starts imitating so I'm to be patient and not give up. Ms. T. continues to insist that drilling over and over and over is the way McKenna will learn to speak.
McKenna continues to have lots of problems with her vowels. She seems to be progressing much faster with her consanants even though that's not our focus. She has all by herself started really working on finishing her words this past week. However if her vowels remain all mixed up the way they are she will continue to have big problems with inteligibilty and this is with a one word utterance in mind. EVERYTHING falls apart when she attempts two words together.
McKenna *IS* improving and I do see it, but it all still seems overwhelming and a very slow road.
One day at a time is a very good motto. I'm doing really well for the most part living that way with her.
Thanks for praying!
Love,
Amber
Ms. T. said not to get discouraged that every session will not be like last time and to focus on the good parts of each session.
This week McKenna has been speaking in an organized sentence, but it sounds like this:
"meh meh nuh nuh nuh CHOO CHOO meh nemeh neh mu uhuhuh HOLP!"
That means: "come see- my train fell off the track and I need help putting it back on."
Ms. T. feels it's good that she understands sentences and how they are structured and that she's trying to imitate normal speech, BUT it's bad because McKenna bites off way more than she can chew. She keeps telling me that we all need to speak very simply to McKenna so that she tries to imitate that. I can't figure how I can get Dave and Cole to simplify their languge. Dave maybe, but at age 4- Cole is very articulate and elaborates MUCH and I'm just not sure how to get him to talk simply to McKenna.
McKenna will say, "Uhhhhhh Oooooo" . . . and Cole will translate, "Oh you mean you are scared there is a monster in the closet and you thought you heard him snoring?" (-:
I tried to work on vowels all week with McKenna and it really didn't go well. She would give 1 or 2 tries maybe and then just give up. Ms. T. suggested I try and sneak it in more than outright asking her to say something before I reward her with whatever the incentive. I'll have to take this advice because a lot of the time the incentive isn't working. Meaning she just gives up and decides she doesn't want a cookie that much and walks away. Also I'll take her first or second try and tell her "good trying McKenna" even if it wasn't even close to accurate.
The way I'm supposed to sneak it in is while I'm getting her a cookie I repeat over and over "oo oo oo" "oo oo oo" as I slowly take my time getting it and giving it to her, hoping that she'll be inspired to imitate me. It may take a while before she starts imitating so I'm to be patient and not give up. Ms. T. continues to insist that drilling over and over and over is the way McKenna will learn to speak.
McKenna continues to have lots of problems with her vowels. She seems to be progressing much faster with her consanants even though that's not our focus. She has all by herself started really working on finishing her words this past week. However if her vowels remain all mixed up the way they are she will continue to have big problems with inteligibilty and this is with a one word utterance in mind. EVERYTHING falls apart when she attempts two words together.
McKenna *IS* improving and I do see it, but it all still seems overwhelming and a very slow road.
One day at a time is a very good motto. I'm doing really well for the most part living that way with her.
Thanks for praying!
Love,
Amber
Wednesday, October 14, 2009
A Glimpse!
I've decided I'll update McKenna's blog at least once a week, probably on Wednesdays after her therapy session.
Today's therapy went really well!!! She focused and worked hard for the whole hour and was making headway. She said 2 new words today:
"hands" (Ms. T. said she was close enough on this one. It sounded like "hents")
"bubble" (this was perfect!)
There might have been another one, but I can't remember. Ms. T. took an inventory of her vowel sounds today. There are 12 vowel sounds in the English language. 7 of them McKenna either could not do at all or had a really hard time with. We are supposed to focus really hard on vowels right now because once she gets those straight it will increase her intelligibility greatly.
I continue to be so impressed with Ms. T. She is so good with McKenna. She is totally in control, patient and seems to have a good balance of pushing and compromising.
McKenna just attacked every thing today with energy and excitement and she had a good sense of humor. My mom watched the session today and there was a couple of times she and I couldn't help but laugh at something and McKenna didn't get embarrassed or clam up- instead she gave us a good natured grin and laughed with us. That was really great for me to see.
I actually teared up at one point- when she was saying "hands" because I was so excited and relieved at how she was doing today. Last week's session was a bit discouraging.
All week long, leading up today I've noticed that McKenna has really been making a lot of good attempts at speech. You have to be a very experienced listener to catch it, but her attempts are more direct and organized. Like she's starting to understand how to work on it. I feel like she went into this weeks session with more security and confidence too. It may also be that by the 3rd time now she knows what to expect and what this time is about.
Since she's smart enough to know she's not talking right, I've really wanted her attitude about therapy to be one of excitement that this is *for* her, to help her. And I've wanted her to feel success so she has hope that it will work for her. I really think that's what happened today. And I'm relieved to the point of happy tears. I think it's going to be so magical for her to be able to communicate. I now have a glimpse of how her world will open up!
The nature of Dyspraxia is that things often take one step forward and then two steps back. I'm not getting ahead of myself. We still have a massive amount of work to do. These little things I was excited about today would be miniscule to someone who didn't know where she was coming from. She still can't really speak in sentences- even two words together or even a lot of single words and be understood. Over 1/2 of vowel sounds she really struggles with. But today I caught a glimpse of how this is working for her and I'm going to cling to that!
Thank you for your support and prayers!
Love,
Amber
Today's therapy went really well!!! She focused and worked hard for the whole hour and was making headway. She said 2 new words today:
"hands" (Ms. T. said she was close enough on this one. It sounded like "hents")
"bubble" (this was perfect!)
There might have been another one, but I can't remember. Ms. T. took an inventory of her vowel sounds today. There are 12 vowel sounds in the English language. 7 of them McKenna either could not do at all or had a really hard time with. We are supposed to focus really hard on vowels right now because once she gets those straight it will increase her intelligibility greatly.
I continue to be so impressed with Ms. T. She is so good with McKenna. She is totally in control, patient and seems to have a good balance of pushing and compromising.
McKenna just attacked every thing today with energy and excitement and she had a good sense of humor. My mom watched the session today and there was a couple of times she and I couldn't help but laugh at something and McKenna didn't get embarrassed or clam up- instead she gave us a good natured grin and laughed with us. That was really great for me to see.
I actually teared up at one point- when she was saying "hands" because I was so excited and relieved at how she was doing today. Last week's session was a bit discouraging.
All week long, leading up today I've noticed that McKenna has really been making a lot of good attempts at speech. You have to be a very experienced listener to catch it, but her attempts are more direct and organized. Like she's starting to understand how to work on it. I feel like she went into this weeks session with more security and confidence too. It may also be that by the 3rd time now she knows what to expect and what this time is about.
Since she's smart enough to know she's not talking right, I've really wanted her attitude about therapy to be one of excitement that this is *for* her, to help her. And I've wanted her to feel success so she has hope that it will work for her. I really think that's what happened today. And I'm relieved to the point of happy tears. I think it's going to be so magical for her to be able to communicate. I now have a glimpse of how her world will open up!
The nature of Dyspraxia is that things often take one step forward and then two steps back. I'm not getting ahead of myself. We still have a massive amount of work to do. These little things I was excited about today would be miniscule to someone who didn't know where she was coming from. She still can't really speak in sentences- even two words together or even a lot of single words and be understood. Over 1/2 of vowel sounds she really struggles with. But today I caught a glimpse of how this is working for her and I'm going to cling to that!
Thank you for your support and prayers!
Love,
Amber
Wednesday, October 7, 2009
Shut Down
Today's speech therapy session for McKenna started out great. She was interested in the toys and games she was working hard and making lots of attempts at speech. And then about 30 minutes in to the hour long session she pretty much just suddenly completely shut down. She just sat there staring off into space and acting like she had no energy or inclination to try to speak, sign or even play. Ms. T. her SLP (Speech Language Pathologist) didn't push her, she backed off and just sat and waited. She never really did snap out of it though for the rest of the hour we could hardly get her to participate. Then after Ms. T. left she just sat in my lap with her head on my shoulder.
I'm not sure what was going on.? If she suddenly got self conscious or discouraged or if she just used up all of her energy and was completely on empty..? I felt bad for her though.
Ms. T. feels McKenna is doing well. She said McKenna is very young at only 27 months and that an hour long session is going to be a challenge for a while. That makes sense to me. We talked about not pushing her too hard. We will all need to learn to read McKenna's signals on that. We also need to make sure we often ask McKenna to say things we know she can say and then really praise her for it so she feels success.
Right now I'm supposed to really focus on vowels. Isolate the main vowel sound in the word and try to have her repeat it. She can do that maybe 60 or 70 percent of the time with 1 word. But when we try to take the vowel sound out of two words and ask her to put them together- that is REALLY hard for her. She rarely succeeds at that. For instance for "right now" I would ask her to say, "i ow". She can say "i" she can say "ow", but when she tries to say them together it either all falls apart or she doesn't even really make a sound (attempt). She just sits there and looks like there is a struggle going on.
I expressed to Ms. T. my overwhelmed feeling after last week and she was very sweet and caring. She encouraged me by saying even with dyspraxia there is often a "click". Meaning once we start getting McKenna on the right path there may/hopefully be a time when things start to click and she doesn't have to struggle every single step of the way. I really hope she's right about that. Because otherwise we have a very very long road ahead of us. I am attempting to take this one day at a time. When I do that I'm good.
Thank you for saying prayers for McKenna's brain and mouth and everything in between. (-:
Love,
Amber
P.S. Thank you Nyree for sharing about your son Paskale- continued blessings in your journey with him. Also thanks to everyone else who commented with support and prayers in my last two posts!
I'm not sure what was going on.? If she suddenly got self conscious or discouraged or if she just used up all of her energy and was completely on empty..? I felt bad for her though.
Ms. T. feels McKenna is doing well. She said McKenna is very young at only 27 months and that an hour long session is going to be a challenge for a while. That makes sense to me. We talked about not pushing her too hard. We will all need to learn to read McKenna's signals on that. We also need to make sure we often ask McKenna to say things we know she can say and then really praise her for it so she feels success.
Right now I'm supposed to really focus on vowels. Isolate the main vowel sound in the word and try to have her repeat it. She can do that maybe 60 or 70 percent of the time with 1 word. But when we try to take the vowel sound out of two words and ask her to put them together- that is REALLY hard for her. She rarely succeeds at that. For instance for "right now" I would ask her to say, "i ow". She can say "i" she can say "ow", but when she tries to say them together it either all falls apart or she doesn't even really make a sound (attempt). She just sits there and looks like there is a struggle going on.
I expressed to Ms. T. my overwhelmed feeling after last week and she was very sweet and caring. She encouraged me by saying even with dyspraxia there is often a "click". Meaning once we start getting McKenna on the right path there may/hopefully be a time when things start to click and she doesn't have to struggle every single step of the way. I really hope she's right about that. Because otherwise we have a very very long road ahead of us. I am attempting to take this one day at a time. When I do that I'm good.
Thank you for saying prayers for McKenna's brain and mouth and everything in between. (-:
Love,
Amber
P.S. Thank you Nyree for sharing about your son Paskale- continued blessings in your journey with him. Also thanks to everyone else who commented with support and prayers in my last two posts!
Thursday, October 1, 2009
Dyspraxia? Say What?
So Verbal Dyspraxia or Apraxia means that McKenna's brain doesn't work quite right. It could have been congenital (formed that way in the womb) or it could have been damaged somehow.
I don't think there is any way to know for sure. I think that it could have happened during her surgery at 6 months old. I don't have any big reason, I just *feel* that way. I do have video of her a few months before her surgery at 4 months old or so, blowing raspberries and making noise (vocalizations). Although even before her surgery she was rather quiet and had a funny deep laugh that we didn't hear very often. My son started laughing late and was very stingy with them for a while, but he quickly broke out and began laughing all the time. McKenna never did that.
Right after her surgery she moaned a lot, but didn't really cry much. That night she was hooked up to monitors and there seemed to be wires everywhere. I remember she had a reaction to the pain medication (or so I've assumed) they gave her in her i.v. She started going crazy moving all over the place. She was up on her hands and knees rocking and just rolling and scooting all over the crib rather spastically, but very quietly. She kept this up for like two hours even though she was clearly exhausted and had just had surgery under her arm. It kind of unnerved me. I didn't let them give her any more of that medication after that. It occurs to me as I write this I should probably get her records and see if I can figure out what they gave her.
The fact that she was born with the congenital malformation of her lymph tissue would seem to put a strike in the congenital category for her Dyspraxia too though. Dave tends to feel she was born this way. Hmmmm . . .
Anyway none of that really matters because "it is what it is" whatever it may be.
The problem with her brain is in the motor planning/programming area. From the Apraxia Kids website: "For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason."
McKenna understands speech extremely well. She scored high on her receptive speech. Everyone that has looked at her or worked with her has commented how very smart she is. She also scored very high on the social/emotional aspect of her evaluation which helps to rule out other things such as Aspergers or Autism.
I am of course happy that she seems to be developing normally and even ahead in all other areas. It is however as McKenna's speech therapist put it, "a blessing and a curse". A "curse" in the sense that McKenna is very sensitive and even self conscious sometimes about her speech. This sometimes causes her to completely clam up or refuse to try. Cole loves his sister so much. There is nothing that Cole likes to do more than laugh. That boy just loves a good laugh. Unfortunately McKenna's speech is pretty darn funny sometimes and Cole just gets so tickled. I have to admit so have I. We have noticed however that McKenna is very sensitive and embarrassed by this.
When Ms T (her therapist) noticed this she agreed that we should try not to laugh, but she also said, "this little girl is going to have to toughen up though." She reiterated what we have been told that it is going to take a few years to get McKenna speaking normally and that she will have to deal with the social ramifications of that.
McKenna's first therapy session was Wednesday and I was in a bit of shock afterwards. It took me all day to process it and deal with my thoughts and emotions. The whole thing was much more intense than I expected. Ms T is amazing! I really like her, however I wanted to punch her quite a few times. 0-: She was so hard on McKenna. She brought toys and played with McKenna the whole hour, but she made her work SO HARD for absolutely everything. McKenna had to say or sign something at every single step, from opening her toy bag to taking turns with Cole to learning how to play with new toys. I was chastised many times for "knowing" what McKenna wants and needs and acting on it without making her speak for it. I had no clue I was doing this so much.
McKenna cried many times during this hour. I realized that I jump at McKenna's every need and can practically read her mind sometimes. I do this so she wont cry and be frustrated. Apparently that is not what I "should" be doing for my daughter. After the session was over McKenna was completely exhausted! She was literally just laying on the hard floor limp.
The enormity of the whole thing hit me. Absolutely everything about acquiring speech we take for granted and with McKenna we can take NOTHING for granted. Everything has to be worked and rehearsed over and over and over. I cried on my way to work. I cried that she'll have to work so hard for something that should just come easily. I cried that she'll have to struggle to talk to her brother and her friends. I cried that she already knows she'd different and it concerns and confuses her.
But I also was relieved and excited.
I'm excited because McKenna worked so hard was so determined and did so well! She is already making progress. We were all so impressed with her work ethic. That girl does not give up. She tries tries tries and tries again. I have always known that McKenna is very strong and feisty. Those attributes will serve her very well.
Love,
Amber
I don't think there is any way to know for sure. I think that it could have happened during her surgery at 6 months old. I don't have any big reason, I just *feel* that way. I do have video of her a few months before her surgery at 4 months old or so, blowing raspberries and making noise (vocalizations). Although even before her surgery she was rather quiet and had a funny deep laugh that we didn't hear very often. My son started laughing late and was very stingy with them for a while, but he quickly broke out and began laughing all the time. McKenna never did that.
Right after her surgery she moaned a lot, but didn't really cry much. That night she was hooked up to monitors and there seemed to be wires everywhere. I remember she had a reaction to the pain medication (or so I've assumed) they gave her in her i.v. She started going crazy moving all over the place. She was up on her hands and knees rocking and just rolling and scooting all over the crib rather spastically, but very quietly. She kept this up for like two hours even though she was clearly exhausted and had just had surgery under her arm. It kind of unnerved me. I didn't let them give her any more of that medication after that. It occurs to me as I write this I should probably get her records and see if I can figure out what they gave her.
The fact that she was born with the congenital malformation of her lymph tissue would seem to put a strike in the congenital category for her Dyspraxia too though. Dave tends to feel she was born this way. Hmmmm . . .
Anyway none of that really matters because "it is what it is" whatever it may be.
The problem with her brain is in the motor planning/programming area. From the Apraxia Kids website: "For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason."
McKenna understands speech extremely well. She scored high on her receptive speech. Everyone that has looked at her or worked with her has commented how very smart she is. She also scored very high on the social/emotional aspect of her evaluation which helps to rule out other things such as Aspergers or Autism.
I am of course happy that she seems to be developing normally and even ahead in all other areas. It is however as McKenna's speech therapist put it, "a blessing and a curse". A "curse" in the sense that McKenna is very sensitive and even self conscious sometimes about her speech. This sometimes causes her to completely clam up or refuse to try. Cole loves his sister so much. There is nothing that Cole likes to do more than laugh. That boy just loves a good laugh. Unfortunately McKenna's speech is pretty darn funny sometimes and Cole just gets so tickled. I have to admit so have I. We have noticed however that McKenna is very sensitive and embarrassed by this.
When Ms T (her therapist) noticed this she agreed that we should try not to laugh, but she also said, "this little girl is going to have to toughen up though." She reiterated what we have been told that it is going to take a few years to get McKenna speaking normally and that she will have to deal with the social ramifications of that.
McKenna's first therapy session was Wednesday and I was in a bit of shock afterwards. It took me all day to process it and deal with my thoughts and emotions. The whole thing was much more intense than I expected. Ms T is amazing! I really like her, however I wanted to punch her quite a few times. 0-: She was so hard on McKenna. She brought toys and played with McKenna the whole hour, but she made her work SO HARD for absolutely everything. McKenna had to say or sign something at every single step, from opening her toy bag to taking turns with Cole to learning how to play with new toys. I was chastised many times for "knowing" what McKenna wants and needs and acting on it without making her speak for it. I had no clue I was doing this so much.
McKenna cried many times during this hour. I realized that I jump at McKenna's every need and can practically read her mind sometimes. I do this so she wont cry and be frustrated. Apparently that is not what I "should" be doing for my daughter. After the session was over McKenna was completely exhausted! She was literally just laying on the hard floor limp.
The enormity of the whole thing hit me. Absolutely everything about acquiring speech we take for granted and with McKenna we can take NOTHING for granted. Everything has to be worked and rehearsed over and over and over. I cried on my way to work. I cried that she'll have to work so hard for something that should just come easily. I cried that she'll have to struggle to talk to her brother and her friends. I cried that she already knows she'd different and it concerns and confuses her.
But I also was relieved and excited.
I'm excited because McKenna worked so hard was so determined and did so well! She is already making progress. We were all so impressed with her work ethic. That girl does not give up. She tries tries tries and tries again. I have always known that McKenna is very strong and feisty. Those attributes will serve her very well.
Love,
Amber
Wednesday, September 30, 2009
Verbal Dyspraxia
It seems we have started on a new part of our journey with McKenna. We have gone longer than ever before without any new Lymphatic Malformations (LM's) popping up. After we removed her first one the second one came up about 6 months later. It has now been 7 months since we treated that second one and I'm absolutely thrilled that nothing new has presented. We have about another year before David and I will breathe easier though. This is due to the fact that a child's lymphatic tissue is growing and expanding until aprox age 3.
However we have discovered a new issue. She doesn't speak well. She is almost 27 months old and can hardly put 2 words together. She only has 5 or so words that might be intelligible to a stranger. And maybe 40 words that I can understand, but are spoken very inconsistently. For instance, she might say the word "baby" 5 different ways, "beeba, bowee, baibe, bawee, baboo" etc... This makes it next to impossible for me to know what she's talking about without context. And I'd say 90 percent of what does come out of her mouth sounds like babble- even to me.
Now- my brother Nathan did not speak at all until he was 3 years old. He just acted like he didn't want to or need to. I have heard numerous stories like this. Where I see McKenna being different from that is that she *is* speaking, she *wants* to speak, she *tries* to speak and is largely unsuccessful. She is obviously both frustrated and embarrassed at what comes out of her mouth. Or what *doesn't* come out of her mouth. She often appears to be groping for a word. She'll say something over and over and over like she knows it doesn't sound right, but she can't quite fix it. She'll often click her tongue or blow her lips or grunt and make noises of frustration when she is struggling to communicate.
So I did my research and came up with "Apraxia" or "Verbal Dyspraxia". As I read the descriptions on this diagnosis my heart dropped, it was describing my daughter! I tried to not jump to conclusions. I tried to hope that this was not McKenna's issue, but deep down I knew... At Rachael's (my sister and Jimmie's mother) urging I called Missouri First Steps. They treat children ages birth to 3 years for all different issues including speech. They came and evaluated McKenna. Unfortunately I was right. She has been given the diagnosis of "Verbal Dyspraxia". They are recommending speech therapy once a week. After 6 weeks they will evaluate how she's doing and may recommend going to twice a week.
This whole thing really just came up on my radar. After she turned two in July I started to pay attention to her speech. I started trying to answer questions like, "Was McKenna a quiet baby?" "When did she begin to speak?" "When did she start babbling?" etc... Much to my dismay I was drawing a huge blank on these answers. I realized that I really hadn't been paying much attention to this.
I feel like the last two years- McKenna's WHOLE life has been a blur. A blur that goes like this:
She's here! So fast . . . 3 months old, WHAT IS THIS?? A tumor? A congenital defect- Cystic Hygroma . . . Surgery or Sclerotherapy? When . .? My cousin's first baby (Gabby) diagnosed very sick inutero . . . My dad slips on some ice and shatters his face. He has surgery . . .Gabby passes away . . . Mckenna 6 months old- surgery to remove Hygroma. Rachael is pregnant! Rachael's baby Gracie diagnosed very sick inutero she has a Cystic Hygroma . . . Gracie passes . . .Turners Syndrome . . . We continue on with the show for our students . . . takes enormous effort under our grief for Gracie. .McKenna turns 1 . . .Show is over. Does McKenna have Turners like Gracie? No! Thank God . . . Gracie's due date . . . Mckenna takes a place with the unlucky 10 percent and blows up another Hygroma . . . Is this truly isolated? . . . She could have a disease . . . Rachael is pregnant again! . . . The ultrasound . . . so nervous- everything is fine! . . . Wait- no it's not. Incompetent Cervix . . . Very little hope for Jimmie . . . Rachael has emergency surgery to try to keep him in . . . McKenna has Sclerotherapy for her 2nd Hygroma . . . McKenna's MRI comes back clear . . . I fall apart . . . Rachael has Jimmie at 24 weeks . . . I run our dance program alone . . . Jimmie goes home . . . McKenna turns 2! Wait . . . . . . . . . . now why doesn't she speak?
Yeah *sigh* . . . I'll be posting about her progress and this journey she is on to the land of speech. Next post I'll write more about what exactly Verbal Dyspraxia is and what it means for McKenna.
Your prayers are always appreciated.
Love,
Amber
However we have discovered a new issue. She doesn't speak well. She is almost 27 months old and can hardly put 2 words together. She only has 5 or so words that might be intelligible to a stranger. And maybe 40 words that I can understand, but are spoken very inconsistently. For instance, she might say the word "baby" 5 different ways, "beeba, bowee, baibe, bawee, baboo" etc... This makes it next to impossible for me to know what she's talking about without context. And I'd say 90 percent of what does come out of her mouth sounds like babble- even to me.
Now- my brother Nathan did not speak at all until he was 3 years old. He just acted like he didn't want to or need to. I have heard numerous stories like this. Where I see McKenna being different from that is that she *is* speaking, she *wants* to speak, she *tries* to speak and is largely unsuccessful. She is obviously both frustrated and embarrassed at what comes out of her mouth. Or what *doesn't* come out of her mouth. She often appears to be groping for a word. She'll say something over and over and over like she knows it doesn't sound right, but she can't quite fix it. She'll often click her tongue or blow her lips or grunt and make noises of frustration when she is struggling to communicate.
So I did my research and came up with "Apraxia" or "Verbal Dyspraxia". As I read the descriptions on this diagnosis my heart dropped, it was describing my daughter! I tried to not jump to conclusions. I tried to hope that this was not McKenna's issue, but deep down I knew... At Rachael's (my sister and Jimmie's mother) urging I called Missouri First Steps. They treat children ages birth to 3 years for all different issues including speech. They came and evaluated McKenna. Unfortunately I was right. She has been given the diagnosis of "Verbal Dyspraxia". They are recommending speech therapy once a week. After 6 weeks they will evaluate how she's doing and may recommend going to twice a week.
This whole thing really just came up on my radar. After she turned two in July I started to pay attention to her speech. I started trying to answer questions like, "Was McKenna a quiet baby?" "When did she begin to speak?" "When did she start babbling?" etc... Much to my dismay I was drawing a huge blank on these answers. I realized that I really hadn't been paying much attention to this.
I feel like the last two years- McKenna's WHOLE life has been a blur. A blur that goes like this:
She's here! So fast . . . 3 months old, WHAT IS THIS?? A tumor? A congenital defect- Cystic Hygroma . . . Surgery or Sclerotherapy? When . .? My cousin's first baby (Gabby) diagnosed very sick inutero . . . My dad slips on some ice and shatters his face. He has surgery . . .Gabby passes away . . . Mckenna 6 months old- surgery to remove Hygroma. Rachael is pregnant! Rachael's baby Gracie diagnosed very sick inutero she has a Cystic Hygroma . . . Gracie passes . . .Turners Syndrome . . . We continue on with the show for our students . . . takes enormous effort under our grief for Gracie. .McKenna turns 1 . . .Show is over. Does McKenna have Turners like Gracie? No! Thank God . . . Gracie's due date . . . Mckenna takes a place with the unlucky 10 percent and blows up another Hygroma . . . Is this truly isolated? . . . She could have a disease . . . Rachael is pregnant again! . . . The ultrasound . . . so nervous- everything is fine! . . . Wait- no it's not. Incompetent Cervix . . . Very little hope for Jimmie . . . Rachael has emergency surgery to try to keep him in . . . McKenna has Sclerotherapy for her 2nd Hygroma . . . McKenna's MRI comes back clear . . . I fall apart . . . Rachael has Jimmie at 24 weeks . . . I run our dance program alone . . . Jimmie goes home . . . McKenna turns 2! Wait . . . . . . . . . . now why doesn't she speak?
Yeah *sigh* . . . I'll be posting about her progress and this journey she is on to the land of speech. Next post I'll write more about what exactly Verbal Dyspraxia is and what it means for McKenna.
Your prayers are always appreciated.
Love,
Amber
Saturday, March 7, 2009
Sclerotherapy Results
It's been over a month since McKenna received the Sclerotherapy for her Lymphatic Malformation near her collar bone. We are VERY excited about the results. It looks and feels like the malformation is totally gone. It took a couple of weeks.
So what now? Now we watch and wait. A child's lymphatic system is still growing and expanding until aprox. the age of 3. So if we can get to the summer of 2010 without anymore malformations presenting. Her odds get better for this ordeal being over with!
I won't update much, unless there is news. Which in Kenna's case- no news is good news! (-:
I'm going to take some pictures of both under her armpit and her shoulder and post some "before and after" pictures this weekend.
Thank you for your continued prayers that this will be over and she'll have no more malformations!
Love,
Amber
So what now? Now we watch and wait. A child's lymphatic system is still growing and expanding until aprox. the age of 3. So if we can get to the summer of 2010 without anymore malformations presenting. Her odds get better for this ordeal being over with!
I won't update much, unless there is news. Which in Kenna's case- no news is good news! (-:
I'm going to take some pictures of both under her armpit and her shoulder and post some "before and after" pictures this weekend.
Thank you for your continued prayers that this will be over and she'll have no more malformations!
Love,
Amber
Friday, February 6, 2009
MRI Results
Praise God! We got the news yesterday that there is no sign of that disease in McKenna's torso and abdomen. No further malformations were spotted. What a relief.
She is doing well. We won't know for a while if the sclerotherapy was totally effective so I'll update this blog whenever we have any news on that.
I am doing better as well. I'm still struggling with some symptoms, but much much better than I was. Everyone from the studio who has been praying for me and has sent or is sending meals-- I want you to know we are so grateful and blessed. It is a huge help right now for me. And also all of my substitute teachers-- thank you!
Love,
Amber
She is doing well. We won't know for a while if the sclerotherapy was totally effective so I'll update this blog whenever we have any news on that.
I am doing better as well. I'm still struggling with some symptoms, but much much better than I was. Everyone from the studio who has been praying for me and has sent or is sending meals-- I want you to know we are so grateful and blessed. It is a huge help right now for me. And also all of my substitute teachers-- thank you!
Love,
Amber
Wednesday, February 4, 2009
Procedure Day Details
McKenna is doing VERY well! She acts normal! Three of the four things I listed I was nervous about or dreading in the last blog- did not happen.
The first thing is I had a nurse ask me, “do you know if she’s receiving anesthesia or sedation?” I suddenly realized that I didn’t *really* know! They made it clear she would be asleep, but I just assumed anesthesia. She was intubated and under anesthesia for her last procedure and though I knew Sclerotherapy was less invasive then surgery it didn’t occur to me she may only have to be sedated. The nurses didn’t know either. Well-- as it turns out she was taken care of by sedation! As most of you know I like to ask lots of questions and be fully informed about the details so I felt a little foolish having completely not investigated that aspect at all. Oh well-- a good surprise!
The second thing is they let me (and Dave) go all the way to the room where she was having her procedure and hold her while they administered the sedation. She was still thrashing and moaning a bit when I put her down on the table, but her eyes were closed and she was unaware I was leaving. Now while it was a bit traumatic to watch her be sedated I definitely preferred that trauma to them taking her from me screaming and leaving me to my imagination of how terrifying it must be to have a bunch of strangers in masks take her away from mommy and then hold her down and do “I don’t know what” to put her to sleep. So second- good surprise!
The third thing is her radiologist Dr. Rivard originally told us he thought she would need a drain. After everything was over and we were being escorted back to get her a nurse informed me there was no drain. She said once Dr. Rivard got in there he decided that the malformation looked small enough, he decided the drain wasn’t necessary. Third- good surprise!!
There were a few very- un-cool moments .
When they put her I.V./Heplock in she was very upset and angry about it. She kept trying to tear it out with her other hand. She was so worked up they ended up having to shoot her up with some valium like drug to calm her down. It was still going to be a while before her procedure at that point. I tried everything to calm her without the drug. I had brought her favorite books and toys, Dave tried his special games he plays with her, I was singing dancing around with her in my arms-- we tried EVERYTHING. That was sad. When they drugged her- her eyes rolled back and she started moving in slow motion. She got this really goofy grin on her face. It was really sad and funny at the same time. I think I was crying and laughing about it. She was really hungry by this point too. It was noon and she hadn’t eaten since dinner the night before. Obviously it’s dangerous to be sedated with food in your stomach.
Another un-cool moment was after everything was over. She was pretty upset when I came back to get her. The nurses had tried to get her to drink some juice and eat some cookies and she very angrily turned them down. They commented on her temper. LOL! She is a very strong feisty little girl and I like her that way! The two things people commented on all day were how pretty she is and how feisty. (-: She stayed obviously angry at me until in the car on the way home I received some inspiration on how to make it better. She is easily righteously offended by Cole every single day. We have this ritual where he gives her a hug, says, “I’m sorry Kenna” and then gives her kisses. It instantly makes everything better in Kenna’s world. So I did that exact thing. I said, “that wasn’t very nice was it Kenna! Momma is so sorry, I’m sorry.” And then I gave her hugs and kisses and she brightened right up. LOL!
But- by far- the winner for the most un-cool moment was embarrassingly --me having a complete physical breakdown in the middle of McKenna’s physical exam at around 11am. I have been having an irregular heart beat (pvc’s) since Sunday afternoon and added to that was cramping (female variety) so severe that I was vomiting, face and extremities were numb and cold and I was barely remaining conscious. I ended up laying in McKenna’s hospital bed with a nurse, my mom, dad and an Anesthesiologist who did acupressure and acupuncture-- surrounding me trying to get things under control. David had to take McKenna out of the room. That nurse and anesthesiologist were so cool though!! It was really a suprise- in a good way- to have such like minded (energy work) people there right when we needed it! There was talk of taking me home or to a hospital that treats adults, but things calmed down and by noon I was able to function. There were a few people in and out who thought I was the patient (a big kid) not McKenna. I remember at one point some one asking,” who’s the mother?” and they pointed to me lying in the bed. And then in answer to the confusion they pointed to McKenna saying-- that’s the patient. And that’s the mother’s mother. (pointing to my mom) At that point I’m crying and laughing about how ridiculous the whole thing was. Anyway I did not want to tell this story to the world on this blog because it’s embarrassing , but so many of you have been very encouragingly making comments about how strong I am that I figured the humbling truth should be known. The last 3 weeks of extreme stress and exhaustion has caught up to me in very dramatic fashion and I am incredibly weak and sick. So yeah-- I need prayer. And I need to practice what I preach, evidently. Peace be still Amber! Sheesh! And Anita-- your prayer about my weary heart was *right on*! Thanks for having my back. (-: I’m still struggling this morning physically so pray for me.
One more un-cool moment-- As we were getting ready to leave the nurses told us to make sure we watched McKenna closely that she would be under the effects of the sedation for another 4 to 6 hours and that she’d have trouble walking, don’t let her do stairs etc… We were like-- yeah, sure-- of course! So we get home and McKenna immediately starts staggering around like a little drunk. She can hardly walk, but she’s very happy to be home. I collapsed in a chair and Dave on the couch. Nate and Cole were chilling watching t.v. and mom turned her attention to me for a few minutes. Suddenly mom and I looked around and it’s like, um--where’s McKenna!!!! My mom jumps up and gasps. There she was up on top of the dining room table! I told you! Did I not say she’s crazy!! 0-:
So we won’t know the results of the MRI until McKenna’s surgeon Dr. Snyder calls. I’m expecting that call within a day or two. In a couple of weeks we will have a follow up appointment with Dr. Rivard (her radiologist) to assess how well the sclerotherapy worked.
I greatly appreciate you care and prayers! Grandpa Howard (Father-in-law) thank you for coming to the hospital in the middle of your busy day to pray for us! All of you guys have no idea how much of a support and encouragement your comments and prayers are to me! And thank you Jennette for taking over with the blogs.
Love,
Amber
The first thing is I had a nurse ask me, “do you know if she’s receiving anesthesia or sedation?” I suddenly realized that I didn’t *really* know! They made it clear she would be asleep, but I just assumed anesthesia. She was intubated and under anesthesia for her last procedure and though I knew Sclerotherapy was less invasive then surgery it didn’t occur to me she may only have to be sedated. The nurses didn’t know either. Well-- as it turns out she was taken care of by sedation! As most of you know I like to ask lots of questions and be fully informed about the details so I felt a little foolish having completely not investigated that aspect at all. Oh well-- a good surprise!
The second thing is they let me (and Dave) go all the way to the room where she was having her procedure and hold her while they administered the sedation. She was still thrashing and moaning a bit when I put her down on the table, but her eyes were closed and she was unaware I was leaving. Now while it was a bit traumatic to watch her be sedated I definitely preferred that trauma to them taking her from me screaming and leaving me to my imagination of how terrifying it must be to have a bunch of strangers in masks take her away from mommy and then hold her down and do “I don’t know what” to put her to sleep. So second- good surprise!
The third thing is her radiologist Dr. Rivard originally told us he thought she would need a drain. After everything was over and we were being escorted back to get her a nurse informed me there was no drain. She said once Dr. Rivard got in there he decided that the malformation looked small enough, he decided the drain wasn’t necessary. Third- good surprise!!
There were a few very- un-cool moments .
When they put her I.V./Heplock in she was very upset and angry about it. She kept trying to tear it out with her other hand. She was so worked up they ended up having to shoot her up with some valium like drug to calm her down. It was still going to be a while before her procedure at that point. I tried everything to calm her without the drug. I had brought her favorite books and toys, Dave tried his special games he plays with her, I was singing dancing around with her in my arms-- we tried EVERYTHING. That was sad. When they drugged her- her eyes rolled back and she started moving in slow motion. She got this really goofy grin on her face. It was really sad and funny at the same time. I think I was crying and laughing about it. She was really hungry by this point too. It was noon and she hadn’t eaten since dinner the night before. Obviously it’s dangerous to be sedated with food in your stomach.
Another un-cool moment was after everything was over. She was pretty upset when I came back to get her. The nurses had tried to get her to drink some juice and eat some cookies and she very angrily turned them down. They commented on her temper. LOL! She is a very strong feisty little girl and I like her that way! The two things people commented on all day were how pretty she is and how feisty. (-: She stayed obviously angry at me until in the car on the way home I received some inspiration on how to make it better. She is easily righteously offended by Cole every single day. We have this ritual where he gives her a hug, says, “I’m sorry Kenna” and then gives her kisses. It instantly makes everything better in Kenna’s world. So I did that exact thing. I said, “that wasn’t very nice was it Kenna! Momma is so sorry, I’m sorry.” And then I gave her hugs and kisses and she brightened right up. LOL!
But- by far- the winner for the most un-cool moment was embarrassingly --me having a complete physical breakdown in the middle of McKenna’s physical exam at around 11am. I have been having an irregular heart beat (pvc’s) since Sunday afternoon and added to that was cramping (female variety) so severe that I was vomiting, face and extremities were numb and cold and I was barely remaining conscious. I ended up laying in McKenna’s hospital bed with a nurse, my mom, dad and an Anesthesiologist who did acupressure and acupuncture-- surrounding me trying to get things under control. David had to take McKenna out of the room. That nurse and anesthesiologist were so cool though!! It was really a suprise- in a good way- to have such like minded (energy work) people there right when we needed it! There was talk of taking me home or to a hospital that treats adults, but things calmed down and by noon I was able to function. There were a few people in and out who thought I was the patient (a big kid) not McKenna. I remember at one point some one asking,” who’s the mother?” and they pointed to me lying in the bed. And then in answer to the confusion they pointed to McKenna saying-- that’s the patient. And that’s the mother’s mother. (pointing to my mom) At that point I’m crying and laughing about how ridiculous the whole thing was. Anyway I did not want to tell this story to the world on this blog because it’s embarrassing , but so many of you have been very encouragingly making comments about how strong I am that I figured the humbling truth should be known. The last 3 weeks of extreme stress and exhaustion has caught up to me in very dramatic fashion and I am incredibly weak and sick. So yeah-- I need prayer. And I need to practice what I preach, evidently. Peace be still Amber! Sheesh! And Anita-- your prayer about my weary heart was *right on*! Thanks for having my back. (-: I’m still struggling this morning physically so pray for me.
One more un-cool moment-- As we were getting ready to leave the nurses told us to make sure we watched McKenna closely that she would be under the effects of the sedation for another 4 to 6 hours and that she’d have trouble walking, don’t let her do stairs etc… We were like-- yeah, sure-- of course! So we get home and McKenna immediately starts staggering around like a little drunk. She can hardly walk, but she’s very happy to be home. I collapsed in a chair and Dave on the couch. Nate and Cole were chilling watching t.v. and mom turned her attention to me for a few minutes. Suddenly mom and I looked around and it’s like, um--where’s McKenna!!!! My mom jumps up and gasps. There she was up on top of the dining room table! I told you! Did I not say she’s crazy!! 0-:
So we won’t know the results of the MRI until McKenna’s surgeon Dr. Snyder calls. I’m expecting that call within a day or two. In a couple of weeks we will have a follow up appointment with Dr. Rivard (her radiologist) to assess how well the sclerotherapy worked.
I greatly appreciate you care and prayers! Grandpa Howard (Father-in-law) thank you for coming to the hospital in the middle of your busy day to pray for us! All of you guys have no idea how much of a support and encouragement your comments and prayers are to me! And thank you Jennette for taking over with the blogs.
Love,
Amber
Monday, February 2, 2009
The Sclerotherapy
Today McKenna had her procedure done, and it went very well. She didn't even have to be intubated during her surgery, only sedated, which was very good.
She also didn't end up having to have a drain that Amber has to clean and take care of, which will be much easier for recovery at home.
Although these things went well, they really won't know for sure how effective the sclerosing agent was for at least a couple of weeks. Pray that the agent traveled successfully into the smaller malformations and that Kenna won't have to go back in for more injections.
The MRI was done today as well, but the results of that will not be known for a couple days.
Kenna recovered well from the surgery, she seems a bit "punch drunk" according to Grandma, but all in all is doing wonderful!!
Also, pray for Amber. The stress of all of this finally caught up to her today, and she is feeling very sick. Aunt Andrea and Chris Scott are doing TKM, which is helping, but some prayers sent Amber's way would be a huge blessing.
Thanks for all your prayers and I will probably update again soon, depending on how Amber is feeling!
Love,
Jennette
She also didn't end up having to have a drain that Amber has to clean and take care of, which will be much easier for recovery at home.
Although these things went well, they really won't know for sure how effective the sclerosing agent was for at least a couple of weeks. Pray that the agent traveled successfully into the smaller malformations and that Kenna won't have to go back in for more injections.
The MRI was done today as well, but the results of that will not be known for a couple days.
Kenna recovered well from the surgery, she seems a bit "punch drunk" according to Grandma, but all in all is doing wonderful!!
Also, pray for Amber. The stress of all of this finally caught up to her today, and she is feeling very sick. Aunt Andrea and Chris Scott are doing TKM, which is helping, but some prayers sent Amber's way would be a huge blessing.
Thanks for all your prayers and I will probably update again soon, depending on how Amber is feeling!
Love,
Jennette
Sunday, February 1, 2009
Lets Get This Show On The Road
The first picture is of McKenna's original Malformation. That one is now completely gone with a very thin scar in it's place.
The second picture is the one we are working on tomorrow. As you can tell it is about half the size of the first one.
McKenna is healthy so it looks like we will be able to get this show on the road concerning her Lymphatic Malformation.
Monday, Feb. 2nd 2009
1pm- Sclerotherapy
2pm- MRI
This all taking place a Children's Mercy downtown.
She is having Sclerotherapy which is injections into her malformation that are supposed to scar the tissue down. Pray that the sclerosing agent does it's job safely and effectively. We need it to travel from the bigger malformation they are injecting into the smaller ones that branch off of it so she doesn't have to go back for more injections. It could take a few days maybe a week or so before we know the results.
She will have a tube coming out of the malformation that will be connected to a drain that will be draining blood and fluids. This will likely be there for 5 days or so. I have to empty the drain and keep track/log the output. I'm having a hard time wrapping my head around how this is going to work. The first time I was able to safety pin this to her back but she was 6 months old and barely mobile. Now-- well-- she's crazy. I find her on top of the back of the toilet, the sink, the dining room table, the kitchen table, she loves to wrestle and roll around, turn in circles until she gets so dizzy she falls, she is a really restless sleeper too etc.. Suffice it to say, I'm a little anxious about keeping her and that drain intact this time.
Concerning the MRI-- this is an exploratory deal. She was not expected to get another malformation in a different place after we removed the first one. This new location is in the general vicinity of the first one, but not close enough to be obviously connected. There is a condition called "Cystic Lymphangiomatosis" that depending on how it presented could be very serious. It would involve her entire lymph system possibly being malformed. We are not expecting this. The doctor's words about doing further testing were along the lines of- "for peace of mind".
Now just because we get a clean picture this time doesn't mean this condition is completely ruled out, but it goes a long way to showing she doesn't have a severe and perhaps deadly presentation. A child's lymph system is still forming/growing/expanding until roughly the age of 3 years old. So we have another couple years of keeping a close eye on things. The other purpose of this MRI is that we will have a picture of her insides at 19 months old to compare to other pictures in the future if need be . . .
So-- I'm nervous! I'm nervous about her being under anesthesia for possibly up to 3 hours, I'm nervous about the results of the sclerotherapy and I'm nervous about the results of the MRI. And-- I'm totally dreading that moment I hand her to the nurse and we part ways-- possibly with her reaching and crying for me.
However-- I have faith that it will all be okay.
Pray for us!
Love,
Amber
P.S. FYI-- all of the previous entries- to this one- are notes and emails I've written in the past about McKenna's situation. I've put the date they were written in the title.
Procedure Canceled (Jan. 7th 2009)
I'm relieved because Rachael's ultrasound went so well yesterday! A healthy boy!! Yeeeeeeah!!!
McKenna however has been sick, *is* sick and so her anesthesiologist, radiologist and a nurse made the decision today to cancel her procedures tomorrow. I know it is the right decision, but I've had some tears because I'm exhausted of this thing hanging over our heads. It is a very complicated thing to schedule these procedures the way they need to be scheduled so we are looking at *weeks*-- maybe even months before they can get her in again. They are working hard to try and make it as soon as possible . . .
I'll let you all know when we have a new date on the calendar.
So-- she still has her latest Lymphatic Malformation and we still don't know if she has the *more* serious "Lymphangiomatosis" . . .
Amber
McKenna however has been sick, *is* sick and so her anesthesiologist, radiologist and a nurse made the decision today to cancel her procedures tomorrow. I know it is the right decision, but I've had some tears because I'm exhausted of this thing hanging over our heads. It is a very complicated thing to schedule these procedures the way they need to be scheduled so we are looking at *weeks*-- maybe even months before they can get her in again. They are working hard to try and make it as soon as possible . . .
I'll let you all know when we have a new date on the calendar.
So-- she still has her latest Lymphatic Malformation and we still don't know if she has the *more* serious "Lymphangiomatosis" . . .
Amber
Questions and Answers (Oct. 7th 2008)
McKenna Update . . .10/7/08
So we met with the Radiologist today. We were in a conference room with Mckenna’s scans up so we could look at them while we talked. I insisted on this appointment as they had originally just had us going in for the procedure without any consultation. Dr. Rivard was great and seemed happy to meet with us.
My questions:
1. Question- What sclerosing agent will you be using?
Answer- Sotradecol
This is exactly what I wanted to hear! It is much milder and safer than straight alcohol. Yeah-- no battle here…
2. Question- What are the possible side affects?
Answer- whenever you break the skin-- infection and bleeding. Also sometimes there is some mild necrosis (tissue death) of the overlying skin. Generally mild and requires some antibiotics. Worse case scenario-- plastic surgery .
3. Question- Will this be a one time injection or will she require this procedure again?
Answer- She has one large (Macrocystic mass) that connects too a small area of some smaller ones. We are going to inject the larger mass and hope the agent travels into the smaller ones as well. If it does not it may require another injection at a different time.
4. Question- Will she require a drain?
Answer- yes-- for a couple of days. He showed me the drain and how it was going to work. Interestingly this one won’t require stitches.
5. Question- will she need pain meds?
Answer-- We will send you home with a prescription you can use at your discretion. (I’m happy about this!)
6. Question-- will she be receiving precautionary antibiotics?
Answer- No! ( I’m happy about this!)
7. Question- will she be kept for 24 hours?
Answer- No. It is an outpatient procedure. (I’m happy about this!)
8. Question- Dr. Snyder feels we should have a CT Scan to make sure she does not have a more diffuse condition. Do you agree?
Answer- it’s very unlikely she has this condition, but yes-- I agree. Information is always a good thing.
9. Question - why a CT Scan over an MRI?
Answer- to be honest- ease and availability. (WOW-- thank you for your honesty!)
He went on to acknowledge that there was radiation exposure but it’s effects are undetermined and likely mild however he did not think negligible and completely respected concern about it.
I told him how I had been in contact with the Vascular clinic At Children’s Hospital of Boston and that they always do MRI’S he acknowledged that was true-- (they sometimes consult with them-- YEAH!) and he intimated it was probably because of the possible radiation exposure that they use MRI on the kids instead if CT. I am currently awaiting an answer from Boston on their reasons for choosing MRI.
He said it was my decision and he would respect either way.
CT is much faster and it’ll happen October 24th if we do that. MRI takes an hour and I’ll have to reschedule everything. It could be possibly 6 to 8 weeks later. I asked him if there was any harm in waiting that long and he said , “No.” That amount of time in her case would not make any difference.
So I’m in the process of rescheduling everything. I want the sclerotherapy to be piggy backed with an MRI and I am willing to wait for that. I can’t help thinking if Mckenna’s lymphatics/immune system is in anyway abnormal or impaired why would I take the chance of exposing her to radiation. What if the CT Scan was clean that day and then the radiation caused her to blow up more LM’s(Lymphatic Malformations). I know that’s not entirely scientific, but it’s just an intuition.
10. Question- will their be contrast used in the scan?
Answer -- yes-- they’ll administer it I.V.
11. Final Question: Her LM’s blow up suddenly when there has been no prior indication anything is wrong. She is exhibiting no symptoms indicating she has a terrible problem with her insides. Is this scan not just a picture of the day? If it’s negative will that really give us any final answers?
Answer-- You are right-- it is just a picture of the day, but it will go a long way to ruling out any kind of severe systemic condition. And gathering information is always a good thing. (I am satisfied with this answer.)
All in all I'm very pleased with this doctor and how this consultation went. We did get approved for medicaid so finances shouldn't be an issue-- thank God. Pray for all of the re-scheduling to go smoothly and that Dr. Snyder is cool with signing off on the MRI instead of the CT. And of course we appreciate your prayers for healing and good health for McKenna.
Love,
Amber
So we met with the Radiologist today. We were in a conference room with Mckenna’s scans up so we could look at them while we talked. I insisted on this appointment as they had originally just had us going in for the procedure without any consultation. Dr. Rivard was great and seemed happy to meet with us.
My questions:
1. Question- What sclerosing agent will you be using?
Answer- Sotradecol
This is exactly what I wanted to hear! It is much milder and safer than straight alcohol. Yeah-- no battle here…
2. Question- What are the possible side affects?
Answer- whenever you break the skin-- infection and bleeding. Also sometimes there is some mild necrosis (tissue death) of the overlying skin. Generally mild and requires some antibiotics. Worse case scenario-- plastic surgery .
3. Question- Will this be a one time injection or will she require this procedure again?
Answer- She has one large (Macrocystic mass) that connects too a small area of some smaller ones. We are going to inject the larger mass and hope the agent travels into the smaller ones as well. If it does not it may require another injection at a different time.
4. Question- Will she require a drain?
Answer- yes-- for a couple of days. He showed me the drain and how it was going to work. Interestingly this one won’t require stitches.
5. Question- will she need pain meds?
Answer-- We will send you home with a prescription you can use at your discretion. (I’m happy about this!)
6. Question-- will she be receiving precautionary antibiotics?
Answer- No! ( I’m happy about this!)
7. Question- will she be kept for 24 hours?
Answer- No. It is an outpatient procedure. (I’m happy about this!)
8. Question- Dr. Snyder feels we should have a CT Scan to make sure she does not have a more diffuse condition. Do you agree?
Answer- it’s very unlikely she has this condition, but yes-- I agree. Information is always a good thing.
9. Question - why a CT Scan over an MRI?
Answer- to be honest- ease and availability. (WOW-- thank you for your honesty!)
He went on to acknowledge that there was radiation exposure but it’s effects are undetermined and likely mild however he did not think negligible and completely respected concern about it.
I told him how I had been in contact with the Vascular clinic At Children’s Hospital of Boston and that they always do MRI’S he acknowledged that was true-- (they sometimes consult with them-- YEAH!) and he intimated it was probably because of the possible radiation exposure that they use MRI on the kids instead if CT. I am currently awaiting an answer from Boston on their reasons for choosing MRI.
He said it was my decision and he would respect either way.
CT is much faster and it’ll happen October 24th if we do that. MRI takes an hour and I’ll have to reschedule everything. It could be possibly 6 to 8 weeks later. I asked him if there was any harm in waiting that long and he said , “No.” That amount of time in her case would not make any difference.
So I’m in the process of rescheduling everything. I want the sclerotherapy to be piggy backed with an MRI and I am willing to wait for that. I can’t help thinking if Mckenna’s lymphatics/immune system is in anyway abnormal or impaired why would I take the chance of exposing her to radiation. What if the CT Scan was clean that day and then the radiation caused her to blow up more LM’s(Lymphatic Malformations). I know that’s not entirely scientific, but it’s just an intuition.
10. Question- will their be contrast used in the scan?
Answer -- yes-- they’ll administer it I.V.
11. Final Question: Her LM’s blow up suddenly when there has been no prior indication anything is wrong. She is exhibiting no symptoms indicating she has a terrible problem with her insides. Is this scan not just a picture of the day? If it’s negative will that really give us any final answers?
Answer-- You are right-- it is just a picture of the day, but it will go a long way to ruling out any kind of severe systemic condition. And gathering information is always a good thing. (I am satisfied with this answer.)
All in all I'm very pleased with this doctor and how this consultation went. We did get approved for medicaid so finances shouldn't be an issue-- thank God. Pray for all of the re-scheduling to go smoothly and that Dr. Snyder is cool with signing off on the MRI instead of the CT. And of course we appreciate your prayers for healing and good health for McKenna.
Love,
Amber
McKenna's Ongoing Journey With Her Cystic Hygroma (Sept. 24th 2008)
So it's been about 7 months since McKenna's surgery to remove her Cystic Hygroma.
Here are some statistics for you: 1 in 6000 to 16,000 is the estimate I've seen for live births with a Cystic Hygroma. Most Cystic hygromas (50-65%) are evident at birth, with 80-90% of CHs presenting by age 2 years. Some authors believe that all CHs are present at birth, although they may have not yet fully manifested at that time. 75% are on the head and neck. 20% are in the axillary region where McKenna's was. McKenna's presented at 3 months of age. Karyotypic abnormalities are present in (60-80%) of the cases diagnosed fetally. Over the summer we had McKenna's chromosomes tested and she has no abnormalities.
Yes-- Rachael's baby Gracie Anne had a Cystic Hygroma which caused a back-up of fluid in her body and subsequently caused her death. Testing showed that Gracie had Turner's Syndrome. So the genetic counseling we have received has been that they are not connected. Even though pathologically they are the same thing. McKenna's is isolated and Gracies was caused by her Turners Syndrome.
Here is an explanation for what a Cystic Hygroma is: Simply, much like your vascular system, there is a certain path in which lymphatic fluid flows and is processed throughout your body. In LM (Lymphatic Malformation) patients, the natural flow of the lymphatic system has been disrupted branching off in different directions into dead ends or like streets in our neighborhoods, a cul-de-sac, if you will. Some of the cul de-sacs create large pockets of fluid. There is no "cure" for Lymphatic Malformation. In some cases, of localized LM, surgical resection or sclerotherapy can eliminate the condition without reoccurrence. However, treatment is aimed at keeping the condition under control not curing it. When the large mass is removed there are lymphatic channels or vessels left behind. Remember the cul-de-sac's? Well, at the end of these vessels are dead ends or cul-de-sac's. The pressure builds and new vessels begin to branch off trying to reach back to the lymphatic system. They meet a dead end and the process repeats itself over and over. This happens just adjacent to the site of treatment and may eventually run back into the site of treatment. Reoccurrence is really the body's continued effort to fix it's lymphatic system.
The problem with these malformations are:
1. They can become infected.
2. They can hemorrage
3. They can invade and compromise surrounding bodily structures.
4. They can be disfiguring
We were told that McKenna would have a 90% chance that nothing else would happen or be detected after her surgery. Unfortunately Friday Sept. 12th I noticed a bump under Mckenna's collar bone near her shoulder on her right side. This *is* the same side her Hygroma was on. She has since had an ultrasound and we've met with and discussed this new development with her surgeon.
The surgeon feels/hopes it is connected with her original mass.
The reason we hope this is connected to her original mass is because a separate area of damaged/deformed lymph tissue is a disturbing thought. Meaning she could possibly have much more than just an isolated issue. If that were the case this condition would be called "Diffuse Lymphangiomatosis" This is a disease that depending on how it presented could be very serious and even fatal. The surgeon recommended we have a CT scan done of Mckenna's torso and abdomen to make sure there are no other visible malformations deep inside her body. He used the phrase, "for our peace of mind" . . .
He is also recommending Sclerotherapy for this new site. He feels there are so many blood vessels and nerve endings there that we would be taking less of a chance damaging something if we went with injections.
So-- We have to decide what to do. Do we proceed with sclerotherapy? Do we do the CT scan? Do we get a second opinion?
Also we found out-- someone dropped the ball and sent out our annual Medicaid forms to the wrong address and we were dropped. We are in the process of "hopefully" getting re-approved for coverage. Pray that works out for us.
We appreciate your prayers for clarity and peace in our decision making. And of course for healing for McKenna!
Love,
Amber
Here are some statistics for you: 1 in 6000 to 16,000 is the estimate I've seen for live births with a Cystic Hygroma. Most Cystic hygromas (50-65%) are evident at birth, with 80-90% of CHs presenting by age 2 years. Some authors believe that all CHs are present at birth, although they may have not yet fully manifested at that time. 75% are on the head and neck. 20% are in the axillary region where McKenna's was. McKenna's presented at 3 months of age. Karyotypic abnormalities are present in (60-80%) of the cases diagnosed fetally. Over the summer we had McKenna's chromosomes tested and she has no abnormalities.
Yes-- Rachael's baby Gracie Anne had a Cystic Hygroma which caused a back-up of fluid in her body and subsequently caused her death. Testing showed that Gracie had Turner's Syndrome. So the genetic counseling we have received has been that they are not connected. Even though pathologically they are the same thing. McKenna's is isolated and Gracies was caused by her Turners Syndrome.
Here is an explanation for what a Cystic Hygroma is: Simply, much like your vascular system, there is a certain path in which lymphatic fluid flows and is processed throughout your body. In LM (Lymphatic Malformation) patients, the natural flow of the lymphatic system has been disrupted branching off in different directions into dead ends or like streets in our neighborhoods, a cul-de-sac, if you will. Some of the cul de-sacs create large pockets of fluid. There is no "cure" for Lymphatic Malformation. In some cases, of localized LM, surgical resection or sclerotherapy can eliminate the condition without reoccurrence. However, treatment is aimed at keeping the condition under control not curing it. When the large mass is removed there are lymphatic channels or vessels left behind. Remember the cul-de-sac's? Well, at the end of these vessels are dead ends or cul-de-sac's. The pressure builds and new vessels begin to branch off trying to reach back to the lymphatic system. They meet a dead end and the process repeats itself over and over. This happens just adjacent to the site of treatment and may eventually run back into the site of treatment. Reoccurrence is really the body's continued effort to fix it's lymphatic system.
The problem with these malformations are:
1. They can become infected.
2. They can hemorrage
3. They can invade and compromise surrounding bodily structures.
4. They can be disfiguring
We were told that McKenna would have a 90% chance that nothing else would happen or be detected after her surgery. Unfortunately Friday Sept. 12th I noticed a bump under Mckenna's collar bone near her shoulder on her right side. This *is* the same side her Hygroma was on. She has since had an ultrasound and we've met with and discussed this new development with her surgeon.
The surgeon feels/hopes it is connected with her original mass.
The reason we hope this is connected to her original mass is because a separate area of damaged/deformed lymph tissue is a disturbing thought. Meaning she could possibly have much more than just an isolated issue. If that were the case this condition would be called "Diffuse Lymphangiomatosis" This is a disease that depending on how it presented could be very serious and even fatal. The surgeon recommended we have a CT scan done of Mckenna's torso and abdomen to make sure there are no other visible malformations deep inside her body. He used the phrase, "for our peace of mind" . . .
He is also recommending Sclerotherapy for this new site. He feels there are so many blood vessels and nerve endings there that we would be taking less of a chance damaging something if we went with injections.
So-- We have to decide what to do. Do we proceed with sclerotherapy? Do we do the CT scan? Do we get a second opinion?
Also we found out-- someone dropped the ball and sent out our annual Medicaid forms to the wrong address and we were dropped. We are in the process of "hopefully" getting re-approved for coverage. Pray that works out for us.
We appreciate your prayers for clarity and peace in our decision making. And of course for healing for McKenna!
Love,
Amber
McKenna is home from the Hospital- Her Story (March 7th 2008)
Thank you- thank you -thank you to everyone who responded with posts, emails and phone calls of prayers and support!!!
McKenna did-- and continues to do very well!!
WARNING--The following is long! It helps me process to write it out though.
McKenna was perfect pre-op . . . She didn’t fuss about not getting to eat-- she just sat quietly in her car seat, played on the exam tables and dozed on my shoulder for a few minutes.
I had a bit of a hard time right before they took her in to surgery-- which is to be expected, but the pre-operation orientation I had gotten from the nurses on the phone over the last couple of days was totally WRONG!!! They were supposed to go over everything with me so we would know what to expect. Well- I was told she would be having outpatient surgery, that she would go home that day, that surgery would last about an hour and instructions on when to stop feeding her before hand etc... I asked a bunch of questions like-- would her sedation be delivered in i.v. form, would she receive antibiotics, what would they be giving her for pain management in recovery etc... and the nurse didn't know the answers to any of those questions! Then the last person we met with before McKenna went into surgery was her surgeon and he proceeded to tell us the surgery could take 2 hours, she would be intubated for the surgery, kept and closely monitored over night and would be evaluated by a bunch of pediatric specialists and sent home with a drain in her side that would stay for a week. I would be learning how to empty the drain and take care of that etc...
Okay-- so if you know me--AT ALL-- you know this REALLY threw me. I would not have changed anything and I totally agree with how they took care of her, BUT I LIKE TO KNOW EVERYTHING! And those details were HUGE-- in my opinion.
As I expected the moment I had to hand her to a stranger/nurse and walk away--was VERY difficult. In the waiting room my father in-law came to pray with us and he got me talking and distracted which really helped pass the time. Then Dave brought some lunch to the waiting room and forgot something-- I went down to the cafe to get it and I got lost in that huge hospital. I got back about 15 minutes later to David--a little pale in the face-- saying SHE'S DONE!! She did good! I missed the post-op meeting with the surgeon-- I couldn't BELIEVE it! But it was definitely for the best because it came way quicker than we expected and when they called Dave into the little private room he was a bit nervous thinking something went wrong. I would have been really FREAKED.
The surgeon told Dave that the Cystic Hygroma had come out really easily and there was one big one and a few smaller ones around it that he also took out. He said it only took him about 10 minutes!!! WOW! He told us before hand that the concerns were that he not damage any nerves that go into her shoulder and down her arm and also any blood vessels. Neither of those seem to be an issue at this point! Now we just have to pray that she stays out of the 10 percent that have a reoccurrence.
When they finally came to get us to say we could see her I was so anxious to hold her. I had tried my hardest to get the nurses to let me be with her in recovery. I told them I practiced a form of hands on energy work and that I just wanted to put my hands on her to help with pain and inflammation and I just wanted to be there when she woke up. They said no . . . For patient confidentiality reasons-- it's not very private and other peoples kids are in there. *SIGH* I also told one of the surgical nurses that if she had bleeding issues, if an artery was nicked etc.. to put her right hand anywhere on McKenna's body with her left hand on top at a 90 degree angle and that it would REALLY help. I said, “I know you think I'm crazy“... Then she said-- in a high voice with big eyes and a smile stuck on her face-- oh no honey-- I don't think you are crazy . . ." Um-- yeah . . LOL!
So as I was waiting for them to bring her out and I could hear her little voice moaning and crying. It took 20 minutes because of a crib issue for them to bring her out. I was pacing and so upset I just want to BUST down the door!!! That was the WORST PART!
She was intubated for surgery-- so she had tape marks on her face and a bit of a raspy voice afterwards. It was really hard to see her and hold her while she was in pain and hooked up to monitors. She had wires and tubes everywhere. She was hooked up to the monitors all the rest of the day and night. I quickly learned when they would go off with alarms it was usually because she had moved and a wire had gotten smashed or kinked or something. I felt very awkward holding her trying not to bump her incision sight which is under her right armpit and down her side and not get tangled up in all of the wires and tubes. I also am really sore from trying to hold her so she was in a comfortable position, remain as still as possible and do “right on” or some other TKM hold.
As a lot of you know I question everything. I'm exhausted, but I feel good about her care. Every time someone came in the room to shoot her i.v. with something I asked what it was, what it was for and re-evaluated with the nurse if I wanted it for her etc... I let them shoot her i.v. twice with a pain medication that is in the Ibuprofen family and after the second time she was hyperactive for 2 and a half hours-- she could not stop moving-- even with her eyes closed --she was trying to sleep and couldn't stop. At 3 am they came in to give her more and she was fast asleep and obviously not in pain-- I said no. They gave her one more dose of Percoset by mouth before we left and that's it. I have a prescription for her if she really needs it, but she is doing VERY well and seems comfortable most of the time. I also turned down glucose water, mylacon (sp?) for gas and other oral pain killers. I had to tell countless people that NO she had never had any immunizations, but only 1 person wanted to talk about it and was pretty respectful.
She vomited my breast milk once a few hours after surgery and had a bloated gassy tummy, but she handled all of her discomfort amazingly and really didn't seem to be in severe pain.
She is a very brave little girl and very tough! Last night when I put her down in the hospital crib to try and get her to sleep for the night so I could lay down-- she actually pushed up on her hands and knees and rocked and tried to crawl. I was shocked she already felt like doing that! She slept much better than I expected too.
Ma (mom) and Aunty Ta Ta (Rach) brought Cole up to visit in the evening. He fell asleep on the way there after a hard days work playing at Ma’s house and he slept up until the last 40 minutes of his 3 hour visit. He did okay, but wasn’t prepared for me and Kenna to be gone all night too-NONE OF US WERE! I talked to him on the phone before he went to bed and he was very sad and anxious-- poor little guy. He also was trying to understand the sight of all of the wires and bloody tubes and monitor etc… He would ask if Kenna was okay-- a lot.
Overall I’m very pleased with how everything went and the care was outstanding! I will write a letter about the pre-op communication issue, but not for the sake of complaining just in the hope it would not happen to someone else.
I also want to say that this experience along with Gabriella Marie Keena’s short, but beautiful and powerful life has taught me to never to take health for granted. McKenna was not ever critical and by some standards this was a walk in the park compared to what some precious babes and their parents go through. This experience only showed me the great chasm I look over to try to even began to understand what my cousin Jennette went through as precious angel Gabby’s mother. This may sound cliched-- but--I swear Gabby’s spirit was close to me the last 2 days because I could NOT stop thinking about her. Thank you Gabby for you sweet life and for watching over us. We will never ever forget you! And Jennette I will never stop praying for peace and healing for you. And health and happiness for your future children.
I love you all thank you for your prayers and your care!
Love,
Amber
McKenna did-- and continues to do very well!!
WARNING--The following is long! It helps me process to write it out though.
McKenna was perfect pre-op . . . She didn’t fuss about not getting to eat-- she just sat quietly in her car seat, played on the exam tables and dozed on my shoulder for a few minutes.
I had a bit of a hard time right before they took her in to surgery-- which is to be expected, but the pre-operation orientation I had gotten from the nurses on the phone over the last couple of days was totally WRONG!!! They were supposed to go over everything with me so we would know what to expect. Well- I was told she would be having outpatient surgery, that she would go home that day, that surgery would last about an hour and instructions on when to stop feeding her before hand etc... I asked a bunch of questions like-- would her sedation be delivered in i.v. form, would she receive antibiotics, what would they be giving her for pain management in recovery etc... and the nurse didn't know the answers to any of those questions! Then the last person we met with before McKenna went into surgery was her surgeon and he proceeded to tell us the surgery could take 2 hours, she would be intubated for the surgery, kept and closely monitored over night and would be evaluated by a bunch of pediatric specialists and sent home with a drain in her side that would stay for a week. I would be learning how to empty the drain and take care of that etc...
Okay-- so if you know me--AT ALL-- you know this REALLY threw me. I would not have changed anything and I totally agree with how they took care of her, BUT I LIKE TO KNOW EVERYTHING! And those details were HUGE-- in my opinion.
As I expected the moment I had to hand her to a stranger/nurse and walk away--was VERY difficult. In the waiting room my father in-law came to pray with us and he got me talking and distracted which really helped pass the time. Then Dave brought some lunch to the waiting room and forgot something-- I went down to the cafe to get it and I got lost in that huge hospital. I got back about 15 minutes later to David--a little pale in the face-- saying SHE'S DONE!! She did good! I missed the post-op meeting with the surgeon-- I couldn't BELIEVE it! But it was definitely for the best because it came way quicker than we expected and when they called Dave into the little private room he was a bit nervous thinking something went wrong. I would have been really FREAKED.
The surgeon told Dave that the Cystic Hygroma had come out really easily and there was one big one and a few smaller ones around it that he also took out. He said it only took him about 10 minutes!!! WOW! He told us before hand that the concerns were that he not damage any nerves that go into her shoulder and down her arm and also any blood vessels. Neither of those seem to be an issue at this point! Now we just have to pray that she stays out of the 10 percent that have a reoccurrence.
When they finally came to get us to say we could see her I was so anxious to hold her. I had tried my hardest to get the nurses to let me be with her in recovery. I told them I practiced a form of hands on energy work and that I just wanted to put my hands on her to help with pain and inflammation and I just wanted to be there when she woke up. They said no . . . For patient confidentiality reasons-- it's not very private and other peoples kids are in there. *SIGH* I also told one of the surgical nurses that if she had bleeding issues, if an artery was nicked etc.. to put her right hand anywhere on McKenna's body with her left hand on top at a 90 degree angle and that it would REALLY help. I said, “I know you think I'm crazy“... Then she said-- in a high voice with big eyes and a smile stuck on her face-- oh no honey-- I don't think you are crazy . . ." Um-- yeah . . LOL!
So as I was waiting for them to bring her out and I could hear her little voice moaning and crying. It took 20 minutes because of a crib issue for them to bring her out. I was pacing and so upset I just want to BUST down the door!!! That was the WORST PART!
She was intubated for surgery-- so she had tape marks on her face and a bit of a raspy voice afterwards. It was really hard to see her and hold her while she was in pain and hooked up to monitors. She had wires and tubes everywhere. She was hooked up to the monitors all the rest of the day and night. I quickly learned when they would go off with alarms it was usually because she had moved and a wire had gotten smashed or kinked or something. I felt very awkward holding her trying not to bump her incision sight which is under her right armpit and down her side and not get tangled up in all of the wires and tubes. I also am really sore from trying to hold her so she was in a comfortable position, remain as still as possible and do “right on” or some other TKM hold.
As a lot of you know I question everything. I'm exhausted, but I feel good about her care. Every time someone came in the room to shoot her i.v. with something I asked what it was, what it was for and re-evaluated with the nurse if I wanted it for her etc... I let them shoot her i.v. twice with a pain medication that is in the Ibuprofen family and after the second time she was hyperactive for 2 and a half hours-- she could not stop moving-- even with her eyes closed --she was trying to sleep and couldn't stop. At 3 am they came in to give her more and she was fast asleep and obviously not in pain-- I said no. They gave her one more dose of Percoset by mouth before we left and that's it. I have a prescription for her if she really needs it, but she is doing VERY well and seems comfortable most of the time. I also turned down glucose water, mylacon (sp?) for gas and other oral pain killers. I had to tell countless people that NO she had never had any immunizations, but only 1 person wanted to talk about it and was pretty respectful.
She vomited my breast milk once a few hours after surgery and had a bloated gassy tummy, but she handled all of her discomfort amazingly and really didn't seem to be in severe pain.
She is a very brave little girl and very tough! Last night when I put her down in the hospital crib to try and get her to sleep for the night so I could lay down-- she actually pushed up on her hands and knees and rocked and tried to crawl. I was shocked she already felt like doing that! She slept much better than I expected too.
Ma (mom) and Aunty Ta Ta (Rach) brought Cole up to visit in the evening. He fell asleep on the way there after a hard days work playing at Ma’s house and he slept up until the last 40 minutes of his 3 hour visit. He did okay, but wasn’t prepared for me and Kenna to be gone all night too-NONE OF US WERE! I talked to him on the phone before he went to bed and he was very sad and anxious-- poor little guy. He also was trying to understand the sight of all of the wires and bloody tubes and monitor etc… He would ask if Kenna was okay-- a lot.
Overall I’m very pleased with how everything went and the care was outstanding! I will write a letter about the pre-op communication issue, but not for the sake of complaining just in the hope it would not happen to someone else.
I also want to say that this experience along with Gabriella Marie Keena’s short, but beautiful and powerful life has taught me to never to take health for granted. McKenna was not ever critical and by some standards this was a walk in the park compared to what some precious babes and their parents go through. This experience only showed me the great chasm I look over to try to even began to understand what my cousin Jennette went through as precious angel Gabby’s mother. This may sound cliched-- but--I swear Gabby’s spirit was close to me the last 2 days because I could NOT stop thinking about her. Thank you Gabby for you sweet life and for watching over us. We will never ever forget you! And Jennette I will never stop praying for peace and healing for you. And health and happiness for your future children.
I love you all thank you for your prayers and your care!
Love,
Amber
McKenna's Surgery Is Tomorrow! (March 5th 2008)
It's tomorrow . . . I'm dreading it HORRIBLY. Please please pray for her. She should be in surgery around 9:30am and in recovery before 11am. Obviously-- her Cystic Hygroma has not gone away. It is growing with her as they said it would. Pray she handles the sedation well, that they get ALL of the defective tissue without damaging her breast and that she does not have major pain afterwards. Thank you for your prayers!!!
Love,
Amber
Love,
Amber
Update On McKenna (Oct. 29th 2007)
So we met with the Pediatric surgeon at Children's Mercy Hospital on Wednesday. He was more informative and attentive then any other doctor as of yet-- so my over all impression was good. He also agrees that the tumor is a Lymphangioma. He says it is rare, but not incredibly so . . . He does have children/patients he treats with them.
So he described it like this-- basically it's a piece of lymph tissue that is not hooked up to the rest of her lymph system correctly-- so it's like a dead end. Once lymph fluid went in it had no way out so it backed up and created the tumor. According to him this is usually an isolated event, but since it is a birth defect she could have defective tissue elsewhere that could cause tumors. It's impossible to know until there is a problem though because the tissue is so microscopic. Of course we are hoping it is indeed an isolated event!!
He said the risks with not doing anything about her tumor are that-
1. It could become infected-- the obvious reason is it is stagnant fluid that probably has toxins in it. This would be bad and require hospitalization and i.v. antibiotics.
2. It could hemorrage-- not deadly, but it would be ugly and traumatic.
3. As she grows it will grow and could wrap itself around vital structures making it harder to remove.
According to him there are two options--
1. Surgery- a 2 hour procedure where they would cut her open and try to remove all of the defective tissue and tumor. She would be under anesthesia and on i.v. antibiotics. There is a 14% reoccurrence rate and there would definitely be a scar.
2. Sclerotherapy-- (a new way of taking care of Lymphangiomas) A 1 hour procedure done by an Interventional Radiologist-- where using Ultrasound as a guide they would insert a needle in her tumor and inject a drug of some sort that would scar the tissue down so no more fluid could flow in. They would install a tiny drain under her arm so as the tissue scarred down the fluid would drain out-- the drain would be removed a few days later. She would still have antibiotics and still be under anesthesia, but it would be less invasive with little scarring on the outside. This is a fairly new way to treat Lymphangiomas so there are no percentages about success, failure, side effects etc...
The surgeon said if it were his kid he'd look into Scelrotherapy. So he contacted another doctor who does Sclerotherapy and after reviewing McKenna's case he has said she does seem a good canidate for this.
So now we have a decision to make . . .
Honestly-- it all sounds horrible and is against everything I believe about how we should treat our bodies. My children are not immunized, we do not do antibiotics(unless it is a very severe infection), we do not do cold medicine or tylenol. McKenna has not had any man-made drug or medicine of any sort EVER!!! (in her time in the womb-- I had nothing either) I think modern medicine has it's place in emergencies, but they waaaaay over do it-- everywhere else. I do not take ANY experts advice or opinion without looking into it myself. And I believe our bodies are amazing and have the ability with some wisdom, instinct and facilitation to heal itself.
That said-- I do believe this is a defect. And that something should be done.
My theory on how it happened is-- Mckenna had just started sitting in her airplane saucer the week her tumor came up. The morning it happened she sat in it for almost an hour and was leaning forward/propped up under that right armpit the whole time. I believe maybe she was putting a bit too much pressure in that spot and maybe cut off some circulation. Her body responded by sending extra fluids rushing to that area and some defective tissue that hadn't filled with fluid before-- filled up. Most of the doctors are poo pooing this theory, but I don't CARE!! Doctors are amazingly disinterested in how things happen and waaay too eager to treat symptoms and remain ignorant. So if her body had not filled that area with fluid before it's because it was not needed and not used under normal functioning circumstances. Therefore could her body drain and absorb the fluid and resolve the tumor-- I think it could!!!
We need results though-- not theories!!! Soooooo our decision is we will do everything we know to do naturally until the 3rd week in December. I am done teaching for Christmas vacation then... I will schedule the sclerotherapy for that week-- I'm choosing the Sclerotherapy because it's less-invasive. I really hope it will go away-- obviously . . . But if it does not-- I will be grateful to medical science for taking care of it.
Everyone pray that it goes away!!
Love you all . . .
So he described it like this-- basically it's a piece of lymph tissue that is not hooked up to the rest of her lymph system correctly-- so it's like a dead end. Once lymph fluid went in it had no way out so it backed up and created the tumor. According to him this is usually an isolated event, but since it is a birth defect she could have defective tissue elsewhere that could cause tumors. It's impossible to know until there is a problem though because the tissue is so microscopic. Of course we are hoping it is indeed an isolated event!!
He said the risks with not doing anything about her tumor are that-
1. It could become infected-- the obvious reason is it is stagnant fluid that probably has toxins in it. This would be bad and require hospitalization and i.v. antibiotics.
2. It could hemorrage-- not deadly, but it would be ugly and traumatic.
3. As she grows it will grow and could wrap itself around vital structures making it harder to remove.
According to him there are two options--
1. Surgery- a 2 hour procedure where they would cut her open and try to remove all of the defective tissue and tumor. She would be under anesthesia and on i.v. antibiotics. There is a 14% reoccurrence rate and there would definitely be a scar.
2. Sclerotherapy-- (a new way of taking care of Lymphangiomas) A 1 hour procedure done by an Interventional Radiologist-- where using Ultrasound as a guide they would insert a needle in her tumor and inject a drug of some sort that would scar the tissue down so no more fluid could flow in. They would install a tiny drain under her arm so as the tissue scarred down the fluid would drain out-- the drain would be removed a few days later. She would still have antibiotics and still be under anesthesia, but it would be less invasive with little scarring on the outside. This is a fairly new way to treat Lymphangiomas so there are no percentages about success, failure, side effects etc...
The surgeon said if it were his kid he'd look into Scelrotherapy. So he contacted another doctor who does Sclerotherapy and after reviewing McKenna's case he has said she does seem a good canidate for this.
So now we have a decision to make . . .
Honestly-- it all sounds horrible and is against everything I believe about how we should treat our bodies. My children are not immunized, we do not do antibiotics(unless it is a very severe infection), we do not do cold medicine or tylenol. McKenna has not had any man-made drug or medicine of any sort EVER!!! (in her time in the womb-- I had nothing either) I think modern medicine has it's place in emergencies, but they waaaaay over do it-- everywhere else. I do not take ANY experts advice or opinion without looking into it myself. And I believe our bodies are amazing and have the ability with some wisdom, instinct and facilitation to heal itself.
That said-- I do believe this is a defect. And that something should be done.
My theory on how it happened is-- Mckenna had just started sitting in her airplane saucer the week her tumor came up. The morning it happened she sat in it for almost an hour and was leaning forward/propped up under that right armpit the whole time. I believe maybe she was putting a bit too much pressure in that spot and maybe cut off some circulation. Her body responded by sending extra fluids rushing to that area and some defective tissue that hadn't filled with fluid before-- filled up. Most of the doctors are poo pooing this theory, but I don't CARE!! Doctors are amazingly disinterested in how things happen and waaay too eager to treat symptoms and remain ignorant. So if her body had not filled that area with fluid before it's because it was not needed and not used under normal functioning circumstances. Therefore could her body drain and absorb the fluid and resolve the tumor-- I think it could!!!
We need results though-- not theories!!! Soooooo our decision is we will do everything we know to do naturally until the 3rd week in December. I am done teaching for Christmas vacation then... I will schedule the sclerotherapy for that week-- I'm choosing the Sclerotherapy because it's less-invasive. I really hope it will go away-- obviously . . . But if it does not-- I will be grateful to medical science for taking care of it.
Everyone pray that it goes away!!
Love you all . . .
Pray for McKenna (Sunday, Oct. 21st 2007)
Friday morning as I was changing McKenna's clothes-- to my horror I noticed this big cyst/tumor like thing under her right armpit on the side of her chest. I rushed her up to the doctor and they were not sure what it was-- so they sent me to Children's Mercy Hostpital for an ultrasound. The doctors have called and they think she has a very rare congenitial defect of her lymph glands. It's called a lymphangioma. The good news is it's not life threatning. The bad news is it's pretty obvious and they think it may require surgery-- especially for cosmetic reasons. I've asked questions like--"Will it grow back if it's surgically removed?" "Will she get more in other places on her body?" "Will it get bigger?" "What is the cause?" "Could it go away on it's own?" All the doctor can say is-- I don't know-- this is really rare.
So you can imagine-- Dave and I are in complete shock. When I dressed her for bed the night before it was not there. We have an appointment to meet with a pediatric surgeon on Wednesday morning. I am not AT ALL ready to cut into her though. We are going to do a lot of TKM and pray and hope it resolves itself.
I am very grateful that it is not harmful-- although I'm still unsure how the docs could know that with only an ultrasound, but for now I'll trust... Even though it's not harmful physically-- it could be harmful psychologically to her when she gets older. You don't want your child to have to deal with something like that. Also we just have no idea what the future may bring since this is so rare. Of course I don't want my beautiful daughter to have a deformity that everyone would stare at etc... But-- even though I'm battling fear about it-- I do have a lot of faith that it could resolve itself through prayer and TKM.
I know you all will pray!
So you can imagine-- Dave and I are in complete shock. When I dressed her for bed the night before it was not there. We have an appointment to meet with a pediatric surgeon on Wednesday morning. I am not AT ALL ready to cut into her though. We are going to do a lot of TKM and pray and hope it resolves itself.
I am very grateful that it is not harmful-- although I'm still unsure how the docs could know that with only an ultrasound, but for now I'll trust... Even though it's not harmful physically-- it could be harmful psychologically to her when she gets older. You don't want your child to have to deal with something like that. Also we just have no idea what the future may bring since this is so rare. Of course I don't want my beautiful daughter to have a deformity that everyone would stare at etc... But-- even though I'm battling fear about it-- I do have a lot of faith that it could resolve itself through prayer and TKM.
I know you all will pray!
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