So we are approaching Averys annual IEP meeting and that means we need to start thinking about all of her options for next year. She should be starting kindergarten next year but I don’t think she is ready for that so I am hoping that holding her back this next year she will be more mature and ready for kindergarten the next year but that still leaves me with next year. Do we leave her where she is at?? Which is in our home school in the morning in a typical classroom and then in the afternoon she is in a dd(developmental delay) classroom with 5 other kids and two teachers..or do we put her in a special education classroom in another school that is about 30 minutes from us? So they wanted me to go and tour the spec ed classroom..so yesterday I went…I was not impressed at all!!!!!!!! I do not feel like that is the best thing for Avery. This classroom had about 7 other kids in there with two teachers. They were kids of all ages..and all of them except ONE were way older then her. One was in kindergarten this year. which means he prob wouldn’t be next year. So right there makes me not like it. Avery THRIVES off of other kids. Just to give you one example……At the beginning of this year all she could do is write a circle…but she went into her typical classroom and seen other kids writing her name and sure enough she was writing her name BY Christmas time!!!! bc she was modeling there behavior. She would only get to be with the regular classroom if she went to the special education for art, library, pe, and music. Im sorry but that is not enough for me! That is not enough for her to have the socialization that she needs..that is not enough of her to see them modeling academic wise…Is she behind though??? Yes I know she is and needs a lot of one on one time but I guess that is where I will come in and I am going to bust my butt off and work with her…But it is a special education room and the teacher knows how to teacher her…right??? I am sure you are saying that to yourself..well not necessarily..I asked that teacher how they were going to teach Avery….what they were going to use…I said kids with DS need to be taught differently…for example when it comes to reading..they learn by sight words and not by phonics. So I asked her how they were going to teach her to read..and she said that they use phonics in there..so she really don’t know how to teach my child any different…I am pretty tempted to just pull her out and homeschool her just so I don’t have to deal with this school CRAP!!!! Bc really that is what this is…its crap…If you talk to all moms that have a child with ds that goes to school we all have one thing in common….WE ALL HAVE HAD SOME SORT OF SCHOOL ISSUE!!! Why does it have to be that way??? Why is everyone sooo stuck on what they did in the past and not looking forward to making a change for the better for the future.. WE have come along way and we have a lot more to go….Check this video out…it makes my heart smile….If given the right chances they can do soooo much….they just need to be givin the opportunity!!
http://fox4kc.com/2012/02/20/down-syndrome-doesnt-end-dreams/#ooid=tzdXFqMzrdr7dbzfwrrv23ax-UaOgUAq
So right now I am in the process of reading up on as much inclusion as I can…and I am going to find as much information on how they learn…so I can start to teach her at home too!! IF I have to I will homeschool her and just take her to school for the socialization part…there is actually a kid that does that in our school..He is a fifth or sixth grader….he has DS and his mom has home schooled him since he was little but he has started going to the school for half the day I think probably for the socialization and all the kids just love him…I might need to look that mom up and give her a call!! Inclusion is soooo important for all the other kids too..it really is a win win situation!
Avery is LOVED at the school…Everyone knows Avery and they all love her..teachers. kids. older kids..younger kids. Just the other day when I was dropping them off a older kid opened up the door at the drop of line and said Hi Avery…and Avery gives her a big huge..and later that day I asked the girls who that girl was and they said that they didn’t know…and I said well she knew Avery..and they both go..oh well EVERYONE knows Avery…lol!! I wonder how my shy girls like that….lol!!
Yesterday I went to bed with a migraine..I cant imagine why…I hate this stuff and it sucks that I have to do all this extra research and reading on laws. just so my kid can have a fair education. But I will give them the fight of there lives. I hope they are ready..bc this mama is not backing down!
As I was getting ready the other day I was thinking about how Avery is almost five..I cant believe it…really..how can it be?? I started thinking about what other “typical” kids her age would be doing…and it hit me…She is behind..like way behind in some areas..ex…Other “typical” kids would be starting to learn how to ride a bike without training wheels..and Avery well she is still learning HOW to ride a bike with training wheels..she cant figure out the pedals for the life of her..every now and I again I get hit..and have a little pity party…ive convinced myself that it is ok though..and it is normal…and then I think about that sweet little girl that God has blessed us with and she doesn’t care if she can pedal that bike or not…she just moves on to something else she can do…she doesn’t let it define who she is..she doesn’t let it stop her from just being a kid….and I know Avery will do things on her own time.
WEll I know this post is all over the place..but I guess that is where I am at right now..my head is just spinning with everything…
Thursday, February 23, 2012
Friday, February 17, 2012
Avery update
So last week we heard back from Boston…and Dr. Kim {the doctor that was on leave..the doctor that created this surgery} looked over all her records and x-rays and feels like that in her case he feels like he needs to see her and not any other dr. So we are going up to Boston on the 27th of this month to see him for a consultation appointment..and then we come back home on the t 28th..so a very short trip…for an hour appointment…urghh…but oh well I'm just so happy that she is going to be seeing Dr. Kim and not any of the other doctors bc she is getting the best of the best!! It definitely pays to do research!!!!!!! That’s all I know for right now…will keep you updated after we go to Boston…
Now school update….I had to go meet with her resource teacher and her teacher of the typical k4 class..and they wanted to tell me all the options that I have for next year..Avery is suppose to go into Kindergarten next year but we all agreed that she is not ready for kindergarten next year…she needs another year of k4 to mature a little more and learn more and just get used to school…so now we can stay with what we have..and that is going to a typical classroom in the morning with 25 other kids in her home school..and then she goes over to another school for a dd {developmental delay} class with about 5 other kids..and is there for the rest of the day..she also has resource room in the morning for a half an hour..So do I want to keep the same thing????? Or I can also put her in a EMD class {special education classroom} for all day. or part of the day.} at another school. I agreed to go and tour the classroom..basically to make them happy and to make them think that I will think about that option..but when they asked me in the meeting right away..what my plans were for Avery??? I said inclusion most of the time..with a possible aide/shadow..and they said that you know that you are in for the fight of your life then???? And I basically said bring it on then….I don’t want to put her in an EMD class bc once when you do that..well you just got yourself another fight for your life…to get her back out of the EMD class and back into a regular classroom..Avery thrives off of the other kids..ex..she seen them writing there name at the beginning of the year..and she wanted to do what they were doing so she started writing her name too..she models kids behavior..good.and.bad. I feel like Avery works really good one on one and her resource teacher also said that too…so I was thinking an aide would keep her on task…help her with things that she needs help with ..like buttoning or snapping her pants..be able to communicate with her with .her signs bc she is for the most part non verbal…but I don’t think if we repeat what we are doing this year that she will not need an aide next year… but then you see the other side..she is really behind..and being in the EMD class they would really work with her one on one bc there are only 10 other kids in there and they know how to teach her ..{Jared’s view} so since we really don’t see eye to eye on this I tell him to stay home when we have school meetings. Which stinks bc then I have no one in my corner.
This school stuff sucks!!!! Im sorry but it just does. It shouldn’t be a battle over getting her in a regular classroom with an aide..but it is. That’s just the way it is.and it is only going to get worse. I know that. It is so hard to know what decisions you are making if they are the right one. and then throw into the mix of your husband not agreeing with your decision. Well then it gets complicated. I m just keeping it real. It is not all great when raising a child with extra needs..There are many extra challenges that you have to deal with.There are highs and when you have highs they are high..really high..it is GREAT…but then yes there are a lot of lows and when your in that low part .it.really.stinks.! But Oh how the highs out weigh the lows any day…and every day!
I know there are some other moms out there with kids around the same age as Avery {4.5}that read my blog…what do you do for school?
Well enough about that..on to what I have been working on..I have been trying to be crafty again..We had to switch a couple of rooms so that left me with a toy room to redo and an office/music room..I got them organized which is on my resolution list which is good right;)
So here are a few pictures of the toy room done.. I love it..it is organized and so bright..I first had to repaint the room..we was turquoise blue on one wall and brown in the rest..I debated back and forth if I wanted to go bright and fun or just keep it same as the rest of the house and choose to just repaint it back to what the main color of my other walls in the house are.
The toy storage set…love them..found at Ikea. I have to make labels still..but added a shelf with a few of the kids pictures..also found at Ikea. my rug..which the picture does not do it justice..it is way better in person but it was also found at ikea..I debated between a bright green and this one but I am glad that I went with this color.
See my gray sign back there..I made it..found one like it on pinterest and really like it so I tired to copy it. I used the top of our old toy box..so It was totally free..that makes me like it even more.
I knew I had to find something for the kids bookbags too and I looked and looked and finally agreed to do something like this..I made them..super easy and super cheap and pretty cute I think.. I need to make one more though..but Hobby Lobby didn’t have enough stuff when I got these so I just got enough to make three for now..Do u see the girls bags???? They are made out of duck tape. They made them with there Grandma. and then I added there names with vinyl. Arent they super cute??? I love them….
The other wall in the toy room..my very first wall vinyl that I made and I think I did pretty good. Then I put some fun scrapbook paper in the frames..the thing under the frames is a piece of trim..I have to get some clips for it but then I am going to use it to hang up the kids artwork. seen that idea on pinterest too..lol!
So that’s it!!
I also have been sewing again…and it feels good..I love to sew ..it is so therapeutic. So I dug through some of my patterns and made something that I hadnt made yet..a sew resolution I guess for me..to make more things with the patterns that I buy instead of just buying them and then letting them sit on my computer. So I made this pillowcase romper..I think it turned out pretty stinkin cute if u ask me!!
I told them to give luvs..and this is what they did…
Then the girls started doing ring around the roses on there own..it was so cute…
They are so much fun!!! I love having twins….Twins have a strong bond like no other..they have so much fun with each other..
I also made a few other things but still have to take pictures..so I guess that will have to be on another post..Hope everyone has a good weekend!!
Now school update….I had to go meet with her resource teacher and her teacher of the typical k4 class..and they wanted to tell me all the options that I have for next year..Avery is suppose to go into Kindergarten next year but we all agreed that she is not ready for kindergarten next year…she needs another year of k4 to mature a little more and learn more and just get used to school…so now we can stay with what we have..and that is going to a typical classroom in the morning with 25 other kids in her home school..and then she goes over to another school for a dd {developmental delay} class with about 5 other kids..and is there for the rest of the day..she also has resource room in the morning for a half an hour..So do I want to keep the same thing????? Or I can also put her in a EMD class {special education classroom} for all day. or part of the day.} at another school. I agreed to go and tour the classroom..basically to make them happy and to make them think that I will think about that option..but when they asked me in the meeting right away..what my plans were for Avery??? I said inclusion most of the time..with a possible aide/shadow..and they said that you know that you are in for the fight of your life then???? And I basically said bring it on then….I don’t want to put her in an EMD class bc once when you do that..well you just got yourself another fight for your life…to get her back out of the EMD class and back into a regular classroom..Avery thrives off of the other kids..ex..she seen them writing there name at the beginning of the year..and she wanted to do what they were doing so she started writing her name too..she models kids behavior..good.and.bad. I feel like Avery works really good one on one and her resource teacher also said that too…so I was thinking an aide would keep her on task…help her with things that she needs help with ..like buttoning or snapping her pants..be able to communicate with her with .her signs bc she is for the most part non verbal…but I don’t think if we repeat what we are doing this year that she will not need an aide next year… but then you see the other side..she is really behind..and being in the EMD class they would really work with her one on one bc there are only 10 other kids in there and they know how to teach her ..{Jared’s view} so since we really don’t see eye to eye on this I tell him to stay home when we have school meetings. Which stinks bc then I have no one in my corner.
This school stuff sucks!!!! Im sorry but it just does. It shouldn’t be a battle over getting her in a regular classroom with an aide..but it is. That’s just the way it is.and it is only going to get worse. I know that. It is so hard to know what decisions you are making if they are the right one. and then throw into the mix of your husband not agreeing with your decision. Well then it gets complicated. I m just keeping it real. It is not all great when raising a child with extra needs..There are many extra challenges that you have to deal with.There are highs and when you have highs they are high..really high..it is GREAT…but then yes there are a lot of lows and when your in that low part .it.really.stinks.! But Oh how the highs out weigh the lows any day…and every day!
I know there are some other moms out there with kids around the same age as Avery {4.5}that read my blog…what do you do for school?
Well enough about that..on to what I have been working on..I have been trying to be crafty again..We had to switch a couple of rooms so that left me with a toy room to redo and an office/music room..I got them organized which is on my resolution list which is good right;)
So here are a few pictures of the toy room done.. I love it..it is organized and so bright..I first had to repaint the room..we was turquoise blue on one wall and brown in the rest..I debated back and forth if I wanted to go bright and fun or just keep it same as the rest of the house and choose to just repaint it back to what the main color of my other walls in the house are.
The toy storage set…love them..found at Ikea. I have to make labels still..but added a shelf with a few of the kids pictures..also found at Ikea. my rug..which the picture does not do it justice..it is way better in person but it was also found at ikea..I debated between a bright green and this one but I am glad that I went with this color.
See my gray sign back there..I made it..found one like it on pinterest and really like it so I tired to copy it. I used the top of our old toy box..so It was totally free..that makes me like it even more.
I knew I had to find something for the kids bookbags too and I looked and looked and finally agreed to do something like this..I made them..super easy and super cheap and pretty cute I think.. I need to make one more though..but Hobby Lobby didn’t have enough stuff when I got these so I just got enough to make three for now..Do u see the girls bags???? They are made out of duck tape. They made them with there Grandma. and then I added there names with vinyl. Arent they super cute??? I love them….
The other wall in the toy room..my very first wall vinyl that I made and I think I did pretty good. Then I put some fun scrapbook paper in the frames..the thing under the frames is a piece of trim..I have to get some clips for it but then I am going to use it to hang up the kids artwork. seen that idea on pinterest too..lol!
So that’s it!!
I also have been sewing again…and it feels good..I love to sew ..it is so therapeutic. So I dug through some of my patterns and made something that I hadnt made yet..a sew resolution I guess for me..to make more things with the patterns that I buy instead of just buying them and then letting them sit on my computer. So I made this pillowcase romper..I think it turned out pretty stinkin cute if u ask me!!
I told them to give luvs..and this is what they did…
Then the girls started doing ring around the roses on there own..it was so cute…
They are so much fun!!! I love having twins….Twins have a strong bond like no other..they have so much fun with each other..
I also made a few other things but still have to take pictures..so I guess that will have to be on another post..Hope everyone has a good weekend!!
Thursday, February 16, 2012
Our Valentines Day
Did you all have a good Valentines day?? I hope so..We sure did and you might be in for a picture overload post!!;) Just sayin’
I told Jianna to go sit by Jayla and so she goes and sits on her instead..lol!
So in comes the bribery
just a little candy…and they ALWAYS have to check out what the other one has and it has to be the exact SAME thing or they want another one that matches it..it is tough getting two little two year olds to look at me…
Jayla on the left and Jianna on the right
See they have to check each others food out again…
I made the girls heart pb&j for lunch…I think they liked them…hehe!
Found another yummy recipe on pinterest and knew that I had to make them..and just to warn you if you do make these…you will not be able to stop after just one..k I warned you!! :)
The girls after school….
I found this hair heart on pinterest once again…yes I know I am addicted to that site..lol!! But anyways I wish I would of taken a picture of it in the morning instead of after school but oh well…The girls said it was a HUGE hit!!! They were just a tad late for breakfast in the morning bc I had to do this three times…and it did take a little bit of time..but it was ok for one special day…
Avery had the best day too..she came home just talking away oh how I wish I knew what she was saying though…but I am sure it was all about her party..…I can not wait until the day I can hear all about her day..I try to ask her questions and its yes or no..and that’s it..so I guess I will take that right now…She wouldn’t let her bag out of her site…We also made Pioneer Woman’s chocolate cookies when she got home from school..OH MY!! They are sooooo goood!!!! You must make them too!!! But they are a cut out cookie and we made hearts of course!! :)We just frosted them with nutella and that was really good..{forgot to take a picture of the after cookie…}
Daddy came home for flowers for his girls!!!
and candy of course too..and yeap they have to check each others out..and make sure that they got the same..
The table set for supper…we had ravioli casserole (the kids favorite), caesar salad, and breadsticks.. you can kind of get a idea of the cookies in this picture..oh yeah and the beautiful flowers that Jared brought for me!!
And for dessert…..the cookies and these cupcakes..I also found them via pinterest…they are suppose to be a more healthy way of making them..it’s a strawberry cake mix with a can of diet red pop..and that is it!! and they were good!! The frosting…well that was equally good..and that was a container of cool whip…one package of fat free vanilla pudding..and 1 cup of milk..and then food coloring..and it was really yummy too!!
So there you have it..that was our Valentines Day!!
{Ill be back tomorrow to give u an update on Avery..and to show you what I have been working on…}
I told Jianna to go sit by Jayla and so she goes and sits on her instead..lol!
So in comes the bribery
just a little candy…and they ALWAYS have to check out what the other one has and it has to be the exact SAME thing or they want another one that matches it..it is tough getting two little two year olds to look at me…
Jayla on the left and Jianna on the right
See they have to check each others food out again…
I made the girls heart pb&j for lunch…I think they liked them…hehe!
Found another yummy recipe on pinterest and knew that I had to make them..and just to warn you if you do make these…you will not be able to stop after just one..k I warned you!! :)
The girls after school….
I found this hair heart on pinterest once again…yes I know I am addicted to that site..lol!! But anyways I wish I would of taken a picture of it in the morning instead of after school but oh well…The girls said it was a HUGE hit!!! They were just a tad late for breakfast in the morning bc I had to do this three times…and it did take a little bit of time..but it was ok for one special day…
Avery had the best day too..she came home just talking away oh how I wish I knew what she was saying though…but I am sure it was all about her party..…I can not wait until the day I can hear all about her day..I try to ask her questions and its yes or no..and that’s it..so I guess I will take that right now…She wouldn’t let her bag out of her site…We also made Pioneer Woman’s chocolate cookies when she got home from school..OH MY!! They are sooooo goood!!!! You must make them too!!! But they are a cut out cookie and we made hearts of course!! :)We just frosted them with nutella and that was really good..{forgot to take a picture of the after cookie…}
Daddy came home for flowers for his girls!!!
and candy of course too..and yeap they have to check each others out..and make sure that they got the same..
The table set for supper…we had ravioli casserole (the kids favorite), caesar salad, and breadsticks.. you can kind of get a idea of the cookies in this picture..oh yeah and the beautiful flowers that Jared brought for me!!
And for dessert…..the cookies and these cupcakes..I also found them via pinterest…they are suppose to be a more healthy way of making them..it’s a strawberry cake mix with a can of diet red pop..and that is it!! and they were good!! The frosting…well that was equally good..and that was a container of cool whip…one package of fat free vanilla pudding..and 1 cup of milk..and then food coloring..and it was really yummy too!!
So there you have it..that was our Valentines Day!!
{Ill be back tomorrow to give u an update on Avery..and to show you what I have been working on…}
Tuesday, February 14, 2012
Happy Valentines Day!!
Happy Valentines Day to all of your family and friends!! We hope you all have a great day and filled with lots of love..I found this awesome idea on pinterest and showed the girls and asked if they wanted to make there own valentines this year..and they all wanted too…so this was there valentine for there class this year..
The girls making there valentines…in there pjs..they woke up Saturday morning knowing they were going to make there Valentines so they wanted to start on them right away…
I had Avery write her name on all of hers…
She did pretty good..she is starting to mix up her letters..she was never doing that before..not sure what to think about that…
Some of the Valentines for the grandparents..{yes they will be late..I'm just mailing them out today..don’t judge!!} The white had painted hands are Jayla and Jianna’s they are suppose to form a heart but it was so hard to get there hand to go where I wanted it to with paint on it..so that’s as good as I got it..so then I just drew a heart..lol..and Avery's is the sign language hand that I traced her hand and then cut it out and folded down the two fingers so i t would be the sign for “I love you”..and the girls traced there hands and then in the middle of there hands is an accordion paper..on the] front it says I love you…and on the paper in the middle it says this much… {ideas all found via pinterest}
She did better on her name on this one..so I had to show you
HAPPY VALENTINES DAY!!!!
The girls making there valentines…in there pjs..they woke up Saturday morning knowing they were going to make there Valentines so they wanted to start on them right away…
I had Avery write her name on all of hers…
She did pretty good..she is starting to mix up her letters..she was never doing that before..not sure what to think about that…
Some of the Valentines for the grandparents..{yes they will be late..I'm just mailing them out today..don’t judge!!} The white had painted hands are Jayla and Jianna’s they are suppose to form a heart but it was so hard to get there hand to go where I wanted it to with paint on it..so that’s as good as I got it..so then I just drew a heart..lol..and Avery's is the sign language hand that I traced her hand and then cut it out and folded down the two fingers so i t would be the sign for “I love you”..and the girls traced there hands and then in the middle of there hands is an accordion paper..on the] front it says I love you…and on the paper in the middle it says this much… {ideas all found via pinterest}
She did better on her name on this one..so I had to show you
HAPPY VALENTINES DAY!!!!
Thursday, February 2, 2012
Avery is NOT going to have her surgery tomorrow
She did it..she did it..she did it!! Avery did soo great at her MRI today..she started out watching Signing times for the first ten minutes about and then fell asleep after that..how she slept in there is beyond me..there were many times where I jumped a few times…it was so LOUD in there!! It took forever too..it was 30 minutes per side..she actually moved on one little bit at the beginning but then after she was sleeping he went back over it at the end so it was all good!!! The tech told me that the dr will call me in a couple of hrs bc he is a big time dr there and he has already told them he wanted the results pretty much as soon as she was done..he says “he's kind of big like that”..haha
So he calls me with in an hour to let me know that her MRI scan was great..no pelvic bone damage..he said that he had been doing A LOT of research on that one surgery that I brought up to him the other day and found a few articles on it.. and has been trying to contact a few drs up in Boston..Everything that he found about the surgery was only on older kids and not any on Avery's age..but then I did tell him that I talked to a mom where her son was 4.5 when they did the surgery..and he found that very interesting..and so he said he would like more time..he said he doesn’t feel comfortable going ahead with the surgery until he talks with them to see what they would recommend doing too..I told him that I started the process up there with her and that we just needed to send the notes and xray pictures and scan info and if we got it to them by next Wednesday they would get back to us on Thursday. He thought that was GREAT too!! He said he wished he had more parents like me..So that is where we are at..So I can honestly say I have complete peace about not having the surgery tomorrow! I got of the phone and just cried..but tears of joy..oh how I wept..I was just so moved by how great our God is!! He heard and answered all the prayers..Thank you all soo much for the many prayers that you all said for us..Thank you God for putting doubt in the drs head..thank you God for leading me to the right decision..and Thank you God for giving me peace!! God is soooo good!!
So he calls me with in an hour to let me know that her MRI scan was great..no pelvic bone damage..he said that he had been doing A LOT of research on that one surgery that I brought up to him the other day and found a few articles on it.. and has been trying to contact a few drs up in Boston..Everything that he found about the surgery was only on older kids and not any on Avery's age..but then I did tell him that I talked to a mom where her son was 4.5 when they did the surgery..and he found that very interesting..and so he said he would like more time..he said he doesn’t feel comfortable going ahead with the surgery until he talks with them to see what they would recommend doing too..I told him that I started the process up there with her and that we just needed to send the notes and xray pictures and scan info and if we got it to them by next Wednesday they would get back to us on Thursday. He thought that was GREAT too!! He said he wished he had more parents like me..So that is where we are at..So I can honestly say I have complete peace about not having the surgery tomorrow! I got of the phone and just cried..but tears of joy..oh how I wept..I was just so moved by how great our God is!! He heard and answered all the prayers..Thank you all soo much for the many prayers that you all said for us..Thank you God for putting doubt in the drs head..thank you God for leading me to the right decision..and Thank you God for giving me peace!! God is soooo good!!
The dr. threw me for a loop
So I should be asking everyone for prayers for tomorrow for Avery’s surgery BUT….it might not happen..instead I am asking prayers for knowledge and wisdom to make the right decision…I wish I could see in a crystal ball and see the future to see how this would affect her bc really that would be soooo much easier..but just to let you all know what is happening..ill try to explain everything good..but just to warn you my head is really spinning with everything so it might be a little confusing..bear with me!!! I am hoping this will help me see it too..by writing it out..so hear we go…….
I get a call from the nurse that the dr wants to see me before the surgery..so i go in there Tuesday morning bright and early..Well apparently he was un easy about everything since the last time he seen me. So he consulted with lots of other drs..and did lots of research and reading up on Avery's problem..you see Avery is very different..He has never seen this before or did this operation on a child with DS.He has seen it many times on children that don’t have DS but usually they put there hip out and it stays out but that is not the case with Avery...what Avery has is very rare with kids with DS..If Avery didn't have DS she wouldn't have this problem..She basically can slide her hip in and out many times..over and over..and over the last year it has become way worse but she has had this since she was a baby. So she puts her hip out many times through out the day and then she pops it back in..it is really gross to hear too.. The more times she does it the worse it gets bc she keeps stretching her ligaments out. And with her having DS that is what makes it so easy for her bc they tend to have looser joints. .so with that being said..half of the drs told him not to operate..the other half said do it..They got an xray of her hip out and it was out way more then what they thought..he had said that she has probably stretched it out to the max….
So this is where I am at…If we don’t do nothing at all…kind of like don't fix something that isn't broken thinking..right now its not broken and it isn't causing her pain..BUT eventually it will probably cause her pain and she will get arthritis in the joint...and it will start wearing down her bone the more she pops it in and out......BUT just maybe the ligaments COULD grow tighter over time too and she could have no problems with it and it could possibly fix itself..
If we do this operation. An open reduction surgery where they are going to go in there and tighten up her hip ligaments and build up her muscles around her hip...there is a chance that it will cause her pain.. or that it wont take and she will go right back to her old ways and we are back to square one... or that it will %100 work and cause her no pain and fix it..and then you have to ponder the complications that can occur from the surgery like the whole bleeding problem..where they cant get it to stop..which scares me to DEATH..especially since he has not did this particular operation on a child with DS before….and they also could kill her hip also while doing the surgery small chance but still a chance….
He thought maybe we could do a MRI to see the bone behind her hips that arent showing up on the xray to see if he could do bone repairment during the surgery that would make it take more..and we wanted it done before surgery to help us to decide if we should cancel it or go ahead with it..but just found out that they cant sedate her for the MRI bc she has severe sleep apnea..so they are going to attempt to do it while she is awake but I don’t know how that is going to work bc she has to lay very STILL and not move at all…but they do have a movie she can watch so maybe that will help..but if it doesn’t work then we will have to schedule an MRI with the anesethologist..so they can put her to sleep completely with a breathing tube down her throat..so that is today..so say some prayers that everything will be fine..
Well here comes the tricky part..So that left me to come home and do lots of research myself...so I went searching for other parents that were in my same similar situation..I went to a DS message board that I have been on since I had Avery and i found this mom who has a girl that has DS and was ten at the time I think that had a different surgery done at after she fell and hurt her hip and it caused her alot of pain.but she had this same thing but when they went to the drs they told her just to leave it alone until it got worse...anyways i found her on FB and messaged her and asked her if I could call her and talk to her…and she emailed me back with her phone number so then I called her yesterday to talk to her..there is a dr in Boston that specializes in a different surgery…The surgery is a triple pelvic osteotomy- what that means is that they make three cuts in the hip socket and then reposition it so that her hip will not dislocate. They stick a few pins in it and the bone grows around it..and then one year later take the pins out..and there have been 5 kids that have ds do this surgery that she knew of.....with this dr..so she gave me the names of a few other ones who I contacted and exchanged a few emails with one was 4.5 when he did the first surgery..and the other boy was 7 when he did it..they both agreed that this Dr. was awesome at what he does..and I should def get his opinion..so I got there number and made a call up there.. So I started the new patient procedure up there…basically I just gave them all of Avery’s info and then when she gets done with the MRI today..I will have them send up the drs notes and images to them and they review them..they do all the reviews on Wednesday’s..so then on Thursday they will get back to me with what he recommends..This dr up there basically created this surgery..it is at the Children's Boston hip center..and most of them did not regret doing the surgery…it is a lot more complicated then what we were going to do..he will only operate on one hip at a time..and it is a 5-7 day stay in the hospital..hmmmm….who do I know in Boston???? ummm no one!!!! lol!!
Well then I called my dr here and asked my dr about this triple pelvic osteotomy. He had heard of it and no one in this area does it on kids. He had heard of the drs. up in Boston too and said that he would gladly put in a referral up there too..But he thought it was done more on older kids and he felt that it wasn't the right thing for Avery...soo now what??? Are you still with me??? are you confused yet??? LOL!! Don’t blame u bc whew..I am!!! Will keep you all updated with the surgery…if its tomorrow or not..Wish us luck at the MRI at one today!!
I get a call from the nurse that the dr wants to see me before the surgery..so i go in there Tuesday morning bright and early..Well apparently he was un easy about everything since the last time he seen me. So he consulted with lots of other drs..and did lots of research and reading up on Avery's problem..you see Avery is very different..He has never seen this before or did this operation on a child with DS.He has seen it many times on children that don’t have DS but usually they put there hip out and it stays out but that is not the case with Avery...what Avery has is very rare with kids with DS..If Avery didn't have DS she wouldn't have this problem..She basically can slide her hip in and out many times..over and over..and over the last year it has become way worse but she has had this since she was a baby. So she puts her hip out many times through out the day and then she pops it back in..it is really gross to hear too.. The more times she does it the worse it gets bc she keeps stretching her ligaments out. And with her having DS that is what makes it so easy for her bc they tend to have looser joints. .so with that being said..half of the drs told him not to operate..the other half said do it..They got an xray of her hip out and it was out way more then what they thought..he had said that she has probably stretched it out to the max….
So this is where I am at…If we don’t do nothing at all…kind of like don't fix something that isn't broken thinking..right now its not broken and it isn't causing her pain..BUT eventually it will probably cause her pain and she will get arthritis in the joint...and it will start wearing down her bone the more she pops it in and out......BUT just maybe the ligaments COULD grow tighter over time too and she could have no problems with it and it could possibly fix itself..
If we do this operation. An open reduction surgery where they are going to go in there and tighten up her hip ligaments and build up her muscles around her hip...there is a chance that it will cause her pain.. or that it wont take and she will go right back to her old ways and we are back to square one... or that it will %100 work and cause her no pain and fix it..and then you have to ponder the complications that can occur from the surgery like the whole bleeding problem..where they cant get it to stop..which scares me to DEATH..especially since he has not did this particular operation on a child with DS before….and they also could kill her hip also while doing the surgery small chance but still a chance….
He thought maybe we could do a MRI to see the bone behind her hips that arent showing up on the xray to see if he could do bone repairment during the surgery that would make it take more..and we wanted it done before surgery to help us to decide if we should cancel it or go ahead with it..but just found out that they cant sedate her for the MRI bc she has severe sleep apnea..so they are going to attempt to do it while she is awake but I don’t know how that is going to work bc she has to lay very STILL and not move at all…but they do have a movie she can watch so maybe that will help..but if it doesn’t work then we will have to schedule an MRI with the anesethologist..so they can put her to sleep completely with a breathing tube down her throat..so that is today..so say some prayers that everything will be fine..
Well here comes the tricky part..So that left me to come home and do lots of research myself...so I went searching for other parents that were in my same similar situation..I went to a DS message board that I have been on since I had Avery and i found this mom who has a girl that has DS and was ten at the time I think that had a different surgery done at after she fell and hurt her hip and it caused her alot of pain.but she had this same thing but when they went to the drs they told her just to leave it alone until it got worse...anyways i found her on FB and messaged her and asked her if I could call her and talk to her…and she emailed me back with her phone number so then I called her yesterday to talk to her..there is a dr in Boston that specializes in a different surgery…The surgery is a triple pelvic osteotomy- what that means is that they make three cuts in the hip socket and then reposition it so that her hip will not dislocate. They stick a few pins in it and the bone grows around it..and then one year later take the pins out..and there have been 5 kids that have ds do this surgery that she knew of.....with this dr..so she gave me the names of a few other ones who I contacted and exchanged a few emails with one was 4.5 when he did the first surgery..and the other boy was 7 when he did it..they both agreed that this Dr. was awesome at what he does..and I should def get his opinion..so I got there number and made a call up there.. So I started the new patient procedure up there…basically I just gave them all of Avery’s info and then when she gets done with the MRI today..I will have them send up the drs notes and images to them and they review them..they do all the reviews on Wednesday’s..so then on Thursday they will get back to me with what he recommends..This dr up there basically created this surgery..it is at the Children's Boston hip center..and most of them did not regret doing the surgery…it is a lot more complicated then what we were going to do..he will only operate on one hip at a time..and it is a 5-7 day stay in the hospital..hmmmm….who do I know in Boston???? ummm no one!!!! lol!!
Well then I called my dr here and asked my dr about this triple pelvic osteotomy. He had heard of it and no one in this area does it on kids. He had heard of the drs. up in Boston too and said that he would gladly put in a referral up there too..But he thought it was done more on older kids and he felt that it wasn't the right thing for Avery...soo now what??? Are you still with me??? are you confused yet??? LOL!! Don’t blame u bc whew..I am!!! Will keep you all updated with the surgery…if its tomorrow or not..Wish us luck at the MRI at one today!!
Subscribe to:
Posts (Atom)
