Kaitlyn will be going to the 7th grade. She will be in the same school. Her IEP was a bit different than in elementary school. The teachers are not as attentive to the "meeting" although seem more creative in their daily care of her need to be independent. Yesterday was a final testament to her inclusive setting. The gen ed 6th grade class trip went to our local water park called Sunsplash. She did not have a para go, nor any support other than her peers. She had a wonderful day where I arrive to see her in the mix with all the other 6th grade girls..They were collecting their belongings from the shared lockers and she was right there claiming her towel, cover up along with making sure all her items were accounted for. She turned to the girls and said "Oh there is my mom" then said; "I had fun with you today, see you Monday" Many of the girls quickly "eagerly" replied; " we had fun with you too Katie, see you at school Katie" "Have a great weekend" Katie smiled and waved with a huge smile. My only regret is not teaching her to reapply sunscreen throughout the day...my summer goal...She is very red.
One item discussed many times throughout her IEP was that while she is included in gen ed classes she does not want to look different than the others EVER... She will no longer use assistive Tech because it is different. The computer and Kursweil is open to all students therefor she is fine with these normal items but the slant board she hides. When items are different she refuses to use them. It has gone to the books they use and worksheets they get along with taking notes. Kaitlyn wants to be like her peers so the simplest things have been done for her.. The text book cover is THE SAME..They simply took the cover off a book to place over her modified book--know one knows-- the content is hers so it LOOKS THE SAME. Her worksheets are made to look just like the class although the content is hers. She has her notes up on the board; class notes; although a second set is set on her desk for accuracy modified to her ability. She is in the daily discussions and it is obvious when she knows the answer to something and is always given the opportunity to answer and some times peers give her the answer when she offers something not quite correct. She is out in the hall when he break bell rings, busy in conversations with peers. When her para is seeking to check on her to return to class she actually HIDES behind another peer to hang until the very last minute.....LOL How typical is that!
Steven's IEP went equally as well as Kaitlyn's.
Steven will move on to Middle school into the 6th grade. He has buckled down over the past several years and it is agreed HE IS OUT OF LIFE SKILLS!!!!! I cried! He will be in the same classes Kaitlyn did this past year. They will for the first time attend the same school and ride the bus together to and from school. I can not express the delight in just this move. Steven will visit his new school next week and allow the staff to get time to know him for some mental planning over the summer. I believe that teachers have soooo much the first few days of school that getting their head wrapped around a student like Steven or Kaitlyn and their needs is something they should have time to prepare. I like teachers to know leaving the year that they will have one of my children upon the fall return. I AM EXCITED ..
Jordan's IEP gives me so many pleasures of hope... He is in the second grade. We had his planning meeting and his teacher from this year hopes to wrap up?? I do not remember the exact term to move on to second grade to teach so that she can have Jordan again!! HUGE DIFFERENCE... Prior years teacher would duc and avoid being in the choices for having him and now three of his team teachers where very vocal at the meeting their would love for the option to be that they could keep him under them and in Gen Ed 2nd grade. HUGE HUGE mountains moved here... A child just a few years ago that I was told this campus does not have the skill for his needs and he would need to be placed elsewhere and LIFE SKILLS was the direction I fought hard hard hard to keep him in place.. I am so very happy I BELIEVED in him and now they do equally.
Tressa's IEP is next week --will post after
Saturday, May 30, 2009
Tired of me trying to catch up...LOL
I guess this is my weekly blog these days..
It is amazing how fast time is flying. I went to the consignment shop two days before I picked up Emma and again yesterday and it felt like a day or two ago.. The lady seemed taken by me talking like it was just a couple days ago when actually two months have passed. HOW???
So since last post. We have had many appointments. Kaitlyn's braces were adjusted and she chose bright flashy pink.. Her dress for the wedding very red. Family photos... yikes.
The kids were excepted for camp the week of Emma's heart surgery THIS IS GREAT! The camp is near where I will be so a bit of comfort during a stressful time.
Emma is up to 8 lbs 1 oz and has grown to 21 1/2 inches long as well as 36 cm for her head growing 3 cm in a month!! BRAIN GROWTH!!!!
We are two weeks from the wedding day with all the last minute alterations to dresses. shoes, and the extras; hair cuts, designs of up do's as well as the fashion jewelry.
It is amazing how fast time is flying. I went to the consignment shop two days before I picked up Emma and again yesterday and it felt like a day or two ago.. The lady seemed taken by me talking like it was just a couple days ago when actually two months have passed. HOW???
So since last post. We have had many appointments. Kaitlyn's braces were adjusted and she chose bright flashy pink.. Her dress for the wedding very red. Family photos... yikes.
The kids were excepted for camp the week of Emma's heart surgery THIS IS GREAT! The camp is near where I will be so a bit of comfort during a stressful time.
Emma is up to 8 lbs 1 oz and has grown to 21 1/2 inches long as well as 36 cm for her head growing 3 cm in a month!! BRAIN GROWTH!!!!
We are two weeks from the wedding day with all the last minute alterations to dresses. shoes, and the extras; hair cuts, designs of up do's as well as the fashion jewelry.
Tuesday, May 26, 2009
Thought for today.
A HUNDRED YEARS FROM NOW.... it may not matter how much money was in my bank account, the style of home I had, nor the type of car I drove; but the future may be different because of the time I spent in the lives of my children.
Sunday, May 24, 2009
Saturday, May 23, 2009
We have a theme
Each person gets to be the one on stage to give a show of their favorite dance move. Then it is all our turn to do the move as they did it...some get us doing some pretty difficult tricks...STEVEN! But everyone must "try" and all is fun fun fun... We have a couple secret moves but those are under wraps until the wedding.....you just have to wait.
Jon and Kate.... eight-give me a break!
Sorry I just have to blog about this oh so over rated mess our society is over indulging in.
I am single with 9 children in the home now and if anyone wishes to give me 75K a week for a few months I promise not to break any laws, break any of the ten commandments.... Actually, if anyone is interested in my opinion, I am 100% behind Jon. His one comment that "excess of anything is not good" is right on the money. This family blessed with beautiful healthy children have turned their positive into a negative and the Mother is now a poor example of a kind gentle Mother anyone should be supporting. It is more apparent that money is her priority and not her children, nor family unity. Money has and always will be the last of priority in my life. Yes, it is necessary to live although it- in excess- for most is as toxic as a bad drug habit. Watch behaviors.....when something interferes with your everyday family life it is an addiction and this fame is an addiction for Kate and not only her but many and our society is breeding these people and I will have no part of it.. I do not watch the show and will not ever watch it now that I have seen the media of the mission for money outweighing the unity of family...No thanks. I pass.
I am single with 9 children in the home now and if anyone wishes to give me 75K a week for a few months I promise not to break any laws, break any of the ten commandments.... Actually, if anyone is interested in my opinion, I am 100% behind Jon. His one comment that "excess of anything is not good" is right on the money. This family blessed with beautiful healthy children have turned their positive into a negative and the Mother is now a poor example of a kind gentle Mother anyone should be supporting. It is more apparent that money is her priority and not her children, nor family unity. Money has and always will be the last of priority in my life. Yes, it is necessary to live although it- in excess- for most is as toxic as a bad drug habit. Watch behaviors.....when something interferes with your everyday family life it is an addiction and this fame is an addiction for Kate and not only her but many and our society is breeding these people and I will have no part of it.. I do not watch the show and will not ever watch it now that I have seen the media of the mission for money outweighing the unity of family...No thanks. I pass.
FAMILY CAFE JUNE 5th- who's goin?
We are considering going to Family CAFE, the whole family or parts of us. One room will not meet the needs of all of us and actually I think some of the kids will not do well. It is all up to how much help, how much respite and the other directives that go along with our family going to such a large conference. Steven and Kaitlyn's respite is in place. Tress and Jordan's is in planning because of funds... Lucas and Emma I believe will stay behind to be safe. I want to check out what is happening in the 0 to 3 world of disabilities as it has been several years and the model has changed to a medical model and in my opinion it appears a whole lot of fraud occurring.... remember my opinion...but if medical insurances are being billed to provide a service and the child is not actually getting the service the insurance is believing or intending for the child to get in the quality of the description of what is to be delivered and by the expects it is to be delivered by well...... a rat is a rat is a rat in my opinion....
I also need to get some insight on my upcoming open heart surgery journey as it scares me to death in a sense and I know mentally it has to be done and is very typical....
My heart steps in when I hand my baby over to a team of Doctors knowing she is coming back to me on a machine keeping her alive...and then they will unhook the machine to see if she can survive without the machine...Seems so far from reality for me I cry just thinking about it.. and yet I know it is very normal for children with Down syndrome and i for years have stood by many families going through it... Just very different when it is you little girl.
I question everything.... Is it the right team of Doctors, is it in the right Hospital.... Do I have the best of everything in place for her??? Am I doing everything for her I should??
It is amazing how just administering heart medication that I know is dangerous by the drill I went through from the pharmacist to get the medication in my hands... They asked me why I needed it, who it is for and what it is being given for..I was taken back and then they went on to be sure I knew I would be giving her a very small amount 0.3 and it is here on the measure stick and no more and it is a tiny amount... etc... I felt like I was walking out with some sort of responsibility beyond normal... I have had the mind set I am keeping my little girl alive for 2 months now..each day is a challenge to feed her, such out excess fluids from her nose, mouth, move her when she is struggling to breath etc...measuring to 0.3 on a dropper is doable but now the mental image of this medication even in our home is a bit uneasy... it is locked in my room with no chance anyone can get to it other than me.. no pressure right???
I also need to get some insight on my upcoming open heart surgery journey as it scares me to death in a sense and I know mentally it has to be done and is very typical....
My heart steps in when I hand my baby over to a team of Doctors knowing she is coming back to me on a machine keeping her alive...and then they will unhook the machine to see if she can survive without the machine...Seems so far from reality for me I cry just thinking about it.. and yet I know it is very normal for children with Down syndrome and i for years have stood by many families going through it... Just very different when it is you little girl.
I question everything.... Is it the right team of Doctors, is it in the right Hospital.... Do I have the best of everything in place for her??? Am I doing everything for her I should??
It is amazing how just administering heart medication that I know is dangerous by the drill I went through from the pharmacist to get the medication in my hands... They asked me why I needed it, who it is for and what it is being given for..I was taken back and then they went on to be sure I knew I would be giving her a very small amount 0.3 and it is here on the measure stick and no more and it is a tiny amount... etc... I felt like I was walking out with some sort of responsibility beyond normal... I have had the mind set I am keeping my little girl alive for 2 months now..each day is a challenge to feed her, such out excess fluids from her nose, mouth, move her when she is struggling to breath etc...measuring to 0.3 on a dropper is doable but now the mental image of this medication even in our home is a bit uneasy... it is locked in my room with no chance anyone can get to it other than me.. no pressure right???
Many things have been happening; Keirsten continues to struggle with her friendships and school has slipped. I am trying to get her into some couseling although it appears it is hard to get into place locally.
Kaitlyn is focused on her class trip to SUN SPLASH water park next Friday. All she talks about next to CAMP!! LOL I think she is ready for a summer break. She actually fell asleep in school yesterday. One of two things are happening; she is getting up in the middle of the night or her thyroid is off. I will get blood drawn Monday.
Steven is active and lovin life. He has a bust next couple of weeks graduating from grade school. He has a trip to the dinner theator Friday, linch at the local Mexican restaurant yummy and the actual graduation celebration.
Jordan is all about Friday ice cream at school LOL He is doing so well making the positive mark almost every day. He struggles at home with Lara. It is such an exhausting experience for the two to be together although I know in the long run it is a good thing. Jordan is learning "I think" he is not sole top dog???? I am not really sure....it is just exhausting the two of them...
Tressa is loosing the steam of home work, etc..so ready fro summer although it scares me she might want to just sit in front of that stupid TV 24-7. I have her in camp, wish she could go more than one week because it is active but the funds are limited..
Lucas is not able to go to camp this summer, you have to be 7 and he is only 5 yrs old. He is going to Mandie's but the rest of the summer we are going to visit state parks and do local attractions for keeping busy as we need to be close because of Emma's heart condition.
Emma...no need she has all her updates in the blog..
Kaitlyn is focused on her class trip to SUN SPLASH water park next Friday. All she talks about next to CAMP!! LOL I think she is ready for a summer break. She actually fell asleep in school yesterday. One of two things are happening; she is getting up in the middle of the night or her thyroid is off. I will get blood drawn Monday.
Steven is active and lovin life. He has a bust next couple of weeks graduating from grade school. He has a trip to the dinner theator Friday, linch at the local Mexican restaurant yummy and the actual graduation celebration.
Jordan is all about Friday ice cream at school LOL He is doing so well making the positive mark almost every day. He struggles at home with Lara. It is such an exhausting experience for the two to be together although I know in the long run it is a good thing. Jordan is learning "I think" he is not sole top dog???? I am not really sure....it is just exhausting the two of them...
Tressa is loosing the steam of home work, etc..so ready fro summer although it scares me she might want to just sit in front of that stupid TV 24-7. I have her in camp, wish she could go more than one week because it is active but the funds are limited..
Lucas is not able to go to camp this summer, you have to be 7 and he is only 5 yrs old. He is going to Mandie's but the rest of the summer we are going to visit state parks and do local attractions for keeping busy as we need to be close because of Emma's heart condition.
Emma...no need she has all her updates in the blog..
Emma 2 months old
Emma is scheduled for heart surgery July 14th. We go to Tampa the 13th and stay 7 to 10 days depending. The camp the kids went to last year has a week for them the 13th-17th which I am hoping to get them into. The 18th is a huge 2 year olds party (Ayden) so arrangements for that are in the works.
It has been a very busy few weeks making all the doctors appointments for the end of the year and all the kids IEP's are due and trying to focus on their next years educational needs.
One Day At A Time~
Blogger moms with infants how do you do it?????
I think about this site often but the time slips by so fast I can not seem to hop on. I know facebook is my most current but it takes seconds and actually one of my tweens can type and post what I tell her to when I am feeding Emma, folding clothes, helping Tressa with math or any other zillion tasks each day. I try to catch up phone calls on the multiple rides in the van to doctors appointments but sometimes it is the silence I seek that comes far and few between right now so I just slip into a silent peace while driving and usually AFTER the appointment I am seeking ears so the calls roll out with me in a frinzy learning of something "else" LOL The crack up of it all is it has all to do with one little girl.............an amazing journey of excitement and exhaustion...NO NOT EMMA....my grand daughter who I have never been able to be in her life came into my life the day before Emma. She is an only child and has had no previous experience with children with disabilities AND SHE IS SPOILED to the point her game of maniplulation is adult level and toxic at the rape ole age of almost 6.... eggshells at best is the discription of my daughter and my relationship. I adopted her as a teen from manyyears in the system and she and I have struggled from day one. I love her dearly but it is not an easy relationship which this new twist is making it stronger in ways and hugely strained inside on other levels. She needs a roof over her head right now for safe keeping while she seeks a job and another place for her and her daughter so I pray peace stays over our home until such events occur that the two are out on their own successfully.....until then pray for our household to hold together with some form of calm...
Friday, May 15, 2009
This past week
A busy home is a happy one.
We are moving in fast forward these days. THe end of school brings IEP's for each of the kids and planning meeting choosing next years teachers for planning. All is time consuming but necessary for success.
Our home is busy with prep work for out of town company, sprucing up the flower beds, getting things in order. With the added responsibility in the home of a new born and with Erin and Lara here it tilts the routine a but in many positive ways although any routine tilted adds new challanges.
Keirsten graduates and heads to High Scool. It scares me some days because she still makes some really bad decisions in friendships and just self control so in a High School setting I feel she will be more an outcast and then what will happen as she tries way to hard to bring attention to herself,,,which all ends up negative.
Kaitlyn is ready for summer. She has not had her ipod for a few weeks because she can not control her LOUD singing while the headset is on which was too much for the bus driver to deal with so until Kailtyn can sing "quietly" she can not wear her ipod and she wants to sleep in.. Her morning personality is oh not so pleasent. She will stay at the same school in the same setting so her confidence will rise and she will be big sister on campus as Steven joins her in middle school. I see this a real positive addition to her educational setting.
Steven is leaving elementary school which will be a HUGE adjustment for him. He has had the same teacher for years, has been on the same campus and obviously knows where his school is in our community...ie he went there Saturday on his bike!!! So it will be interesting how he deals with middle school and more importantly bonding on the bus and campus with sister also there. Steven and Kaitlyn have never attended the same campus (that they can remember) It was tried during my divorce when my ability to advocate was exhausted and that put him into a seperate school and nothing ever got changed. His setting will be different in middle school he will be in a more accademiccally challanging setting as his beginning years he resisted any academics.
Jordan will stay at the same school going from 1st to 2nd grade in general education settings with behavioral supports. His behavioral support person is a K-1 although academically Jordan remains in pre K to K academics so this is no issue and she sure knows him well to help maintaine his success on campus with appropriate positive reinforcements so he doesn't resort to negative attention seeking behaviors.
Tressa...oh miss Tressa... I have not been able to successfully complete her IEP this year for a conclusive decision although it appears she is moving to 2nd grade with behavioral supports which in 2nd grade is a teacher I am unfamiliar with so this may be something new for me. Tressa needs--must have a firm hand as her personal para on campus. She is the most challanging of my children and runs ciurcles around many adults who just struggle with understanding the entire complex disability she has Prader-willi syndrome. THis needs to be in place as she manages to not be in class for academics because she makes up nonssensical reasons to go to the clinic, bathroom, call mom, etc.
Lucas is gathering such a cute little boy personality. He has this little smirk smile when he returns home from school you just know he has had a great day. He seeks attention now which is WONDERFUL. His role as Lucas has grown in the home as he is making his space instead of hiding away from the action he now engages in it for a time and then will sit back and watch but not hide in his room.
Emma. Well she is 24 hour care. She picks up every virus out there. Home only a couple days and she is conjested struggling to eat and again throwing up so not sure where this is heading. I go to Tampa Monday to see the heart surgeon and that will help me plan out local supports. I have OT held off until I know she will not suffer from strenious exercize to build tone. She is not able to hold a rattle and does not follow light up toys yet. She can lift her head although very weak. Medical is my priority today.
We are moving in fast forward these days. THe end of school brings IEP's for each of the kids and planning meeting choosing next years teachers for planning. All is time consuming but necessary for success.
Our home is busy with prep work for out of town company, sprucing up the flower beds, getting things in order. With the added responsibility in the home of a new born and with Erin and Lara here it tilts the routine a but in many positive ways although any routine tilted adds new challanges.
Keirsten graduates and heads to High Scool. It scares me some days because she still makes some really bad decisions in friendships and just self control so in a High School setting I feel she will be more an outcast and then what will happen as she tries way to hard to bring attention to herself,,,which all ends up negative.
Kaitlyn is ready for summer. She has not had her ipod for a few weeks because she can not control her LOUD singing while the headset is on which was too much for the bus driver to deal with so until Kailtyn can sing "quietly" she can not wear her ipod and she wants to sleep in.. Her morning personality is oh not so pleasent. She will stay at the same school in the same setting so her confidence will rise and she will be big sister on campus as Steven joins her in middle school. I see this a real positive addition to her educational setting.
Steven is leaving elementary school which will be a HUGE adjustment for him. He has had the same teacher for years, has been on the same campus and obviously knows where his school is in our community...ie he went there Saturday on his bike!!! So it will be interesting how he deals with middle school and more importantly bonding on the bus and campus with sister also there. Steven and Kaitlyn have never attended the same campus (that they can remember) It was tried during my divorce when my ability to advocate was exhausted and that put him into a seperate school and nothing ever got changed. His setting will be different in middle school he will be in a more accademiccally challanging setting as his beginning years he resisted any academics.
Jordan will stay at the same school going from 1st to 2nd grade in general education settings with behavioral supports. His behavioral support person is a K-1 although academically Jordan remains in pre K to K academics so this is no issue and she sure knows him well to help maintaine his success on campus with appropriate positive reinforcements so he doesn't resort to negative attention seeking behaviors.
Tressa...oh miss Tressa... I have not been able to successfully complete her IEP this year for a conclusive decision although it appears she is moving to 2nd grade with behavioral supports which in 2nd grade is a teacher I am unfamiliar with so this may be something new for me. Tressa needs--must have a firm hand as her personal para on campus. She is the most challanging of my children and runs ciurcles around many adults who just struggle with understanding the entire complex disability she has Prader-willi syndrome. THis needs to be in place as she manages to not be in class for academics because she makes up nonssensical reasons to go to the clinic, bathroom, call mom, etc.
Lucas is gathering such a cute little boy personality. He has this little smirk smile when he returns home from school you just know he has had a great day. He seeks attention now which is WONDERFUL. His role as Lucas has grown in the home as he is making his space instead of hiding away from the action he now engages in it for a time and then will sit back and watch but not hide in his room.
Emma. Well she is 24 hour care. She picks up every virus out there. Home only a couple days and she is conjested struggling to eat and again throwing up so not sure where this is heading. I go to Tampa Monday to see the heart surgeon and that will help me plan out local supports. I have OT held off until I know she will not suffer from strenious exercize to build tone. She is not able to hold a rattle and does not follow light up toys yet. She can lift her head although very weak. Medical is my priority today.
Sunday, May 10, 2009
HAPPY MOTHER'S DAY
I am enjoying a quiet day at home with the kids.
They made me breakfast in bed...my favorite coffee made sweet and blond as I like it, some yummy Quiche Lorraine and fresh strawberries. Watching DVD's on my bed
WHILE MISS EMMA SLEEPS IN HER BED FOR HOURS.........needless to say she was awake alert and all smiles all night making sure she got her feedings every three hours like clock work!! She is a true red head! Attitude.
They made me breakfast in bed...my favorite coffee made sweet and blond as I like it, some yummy Quiche Lorraine and fresh strawberries. Watching DVD's on my bed
WHILE MISS EMMA SLEEPS IN HER BED FOR HOURS.........needless to say she was awake alert and all smiles all night making sure she got her feedings every three hours like clock work!! She is a true red head! Attitude.
Saturday, May 9, 2009
It was a great day.....W A S......
The girls and I went to get Kaitlyn's shoes and picked up some more jewelry for their complete wedding wears...then to the alteration fitting...all was going great...over to the mall we grab a smoothie and begin window shopping... I need to find a dress...I am not sure how we ended in; Hot Topic, Journey, wet seal, Justice and other size 0 to 4 shops... I did find the PERFECT dress for Emma at Dillard's although the one in her size had a snag..I will check the other stores because it was PERFECT. Then off to the women's --it is MOMS time.... My cell phone rings...it is Mandie..... Steven has gone missing.. she said they were making Morhter's day gifts which he was great about. When she went to making the chocolate pies he didn't want to participate. She said he got dressed to go out and play--fenced in back yard!!! She made the pies and then went to get him to come in for a shower.... no Steven. She was in a panic, I told her to go to his friends home... he was not there. I told her I was already heading home but she needs to call 911. They had been searching for about 10 minutes by this time and that is my limit. She called the police who informed her they have him...she said it can't be the same kid because the directions of where he was found were too far away. The operator told her to proceed to the location that they believe it is him.. She insisted it simply could not be him as it is over 2 miles from our home and impossible for him to walk that far, that fast... They continue to tell her to go to the location.. as she drives she then realizes it is across the street from his school. As she approaches; Steven is in the police car. They told her he was red faced and very tired when he WALKED INTO SOMEONES HOME.... The house is yellow with a green car parked out front...SAME AS OURS. When he entered the home he yelled out "Mom I back". The woman in the home was startled with Steven going to her refrigerator to get a drink of water she called 911. The police insisted he walked...I got on the phone and told her no way..ask him where his bike is and he clearly states "at my school" She turned around and drove back to the school and he directed her to the bus ramp and there sat KAITLYN's 3 wheel bike parked in front of the closed, locked shut gate to the bus ramp. Steven began to cry when he saw my van turn the corner and locate him and the bike- in Mandie's car. He must have said he was sorry a thousand times in the first couple of minutes he saw me.
HAPPY MOTHER'S DAY!
I will go back to the mall during the week when they are all safe in school!!!
The girls and I went to get Kaitlyn's shoes and picked up some more jewelry for their complete wedding wears...then to the alteration fitting...all was going great...over to the mall we grab a smoothie and begin window shopping... I need to find a dress...I am not sure how we ended in; Hot Topic, Journey, wet seal, Justice and other size 0 to 4 shops... I did find the PERFECT dress for Emma at Dillard's although the one in her size had a snag..I will check the other stores because it was PERFECT. Then off to the women's --it is MOMS time.... My cell phone rings...it is Mandie..... Steven has gone missing.. she said they were making Morhter's day gifts which he was great about. When she went to making the chocolate pies he didn't want to participate. She said he got dressed to go out and play--fenced in back yard!!! She made the pies and then went to get him to come in for a shower.... no Steven. She was in a panic, I told her to go to his friends home... he was not there. I told her I was already heading home but she needs to call 911. They had been searching for about 10 minutes by this time and that is my limit. She called the police who informed her they have him...she said it can't be the same kid because the directions of where he was found were too far away. The operator told her to proceed to the location that they believe it is him.. She insisted it simply could not be him as it is over 2 miles from our home and impossible for him to walk that far, that fast... They continue to tell her to go to the location.. as she drives she then realizes it is across the street from his school. As she approaches; Steven is in the police car. They told her he was red faced and very tired when he WALKED INTO SOMEONES HOME.... The house is yellow with a green car parked out front...SAME AS OURS. When he entered the home he yelled out "Mom I back". The woman in the home was startled with Steven going to her refrigerator to get a drink of water she called 911. The police insisted he walked...I got on the phone and told her no way..ask him where his bike is and he clearly states "at my school" She turned around and drove back to the school and he directed her to the bus ramp and there sat KAITLYN's 3 wheel bike parked in front of the closed, locked shut gate to the bus ramp. Steven began to cry when he saw my van turn the corner and locate him and the bike- in Mandie's car. He must have said he was sorry a thousand times in the first couple of minutes he saw me.
HAPPY MOTHER'S DAY!
I will go back to the mall during the week when they are all safe in school!!!
Kailtyn's second fitting tday...
Kaitlyn and I ar heading to the Bridal store for her second fitting today with shoes, bra and slip.. Then we will go to the mall to see about my dress. I have one picked at the Bridal store Photos will follow
Catch up from last week
Friday May 8th
Tessa's dress fitting is at 10am, then ears to be pierced and off to take Emma to the eye specialist at 1 pm and Tressa to the ear specialist at 2:30. The dress is BEAUTIFUL! Her ear piercing went well and she chose a ring to wear for the wedding as well. I could not be in two places at once so Mandie is taking Tressa and I am taking Emma to her Doctor's. Emma's appointment at 1pm lasted till 4 pm as he is having some issues on her eyes he said she is far sided which is unusual for kids with Down syndrome although he sees all god...BUT he wants to see her i four to six weeks..tells me to fit it around her heart surgery if needed. OK, I am not stupid....NORMAL eyes do not need seen in four to six weeks... but he said it is just his need to watch her.... SO I scheduled for the week the kids are in camp June 17th.
Thursday May 7th Emma is feeding well, I want to go home.. She has eaten like they said if she did you go home.. She has been hooked to machines she wants to me loved on free of all the cords and needles..alarms going off etc. Both doctors come at the same time and release paperwork starts.. I inform home we are coming. It took a few hours as I packed the room had everything in the van except Emma...I want to go home!
Wednesday May 6th We would be going home today but because I requested the additional test we are instead heading to Pre Op. I am scared. I have cried all night, I just want to hold her for the hour I have until surgery...BUT OMG.... they are here...I ask what are you doing... 8 am.. Surgery is 10:45am. They look at me in shock. Ma'am you do not know your daughter is going for surgery???? I said yes, but it is at 10:45 and I have family and friends coming to be with me..Well they have an opening in their schedule, she is going now... I had just gotten Emma on me to cuddle and talk .. I am numb. Tears just flow as I keep silent. I did not want any more uproar over my asking questions..the decision was made to stay and I need to be brave. Entering Pre op the nurse shares she is aware of my concerns and all that happened last night by my asking questions and demanding answers to make me feel I am doing the right thing by staying local. She assures me EVERYONE is aware. I get to hold Emma and I am holding with all my love...Connie walks around the corner and said se woke up feeling I needed her and she came.. I felt so good that she was there. It all happens so fast and she is wheeled away... I have one hour which seemed like a half a day or more before the surgeon came out to say it all went very well. Nothing unexpected. I felt relief and wanted to hold her...in a half hour thy came for me to say she is back up in her room... Connie and I ran to the room to be by her side. We spent the day holding her as she could not eat until 6 pm and she sure was hungry. At her 6 pm feeding she ate it in seconds.. kept it all down and we cuddled till 9pm...The 9 pm feeding went equally as well so we cuddled till midnight.. She ate and we bedded down for sleep. Yes she was laying on my chest. I feel soundly to sleep and knew I needed to get her in her bed so I did not drop her.. The nurse fed her at 3 am and woke me at 6. All is going well..
Tuesday May 5th, The doctor said that he wants one more day of antibiotics because of her conditions she needs the extra because hey did not get any conclusive answers to the cause of the fever..so to be cautious we will stay over to tomorrow and then go home. Because I believe we got the virus by sitting in waiting rooms I request that we go ahead with the Gird/reflux test since we are staying any way. He agrees and orders us for upper GI at 1 pm. When we go for the test I can tell as the test concludes something is not Right..we go straight to a sonogram of her tummy immediately. That person isn't talking, just said they will discuss everything when I get back to the room... then I am pushed to the hallway to wait fora transport person...I so wanted to go by myself to the room and cry..I just know something is wrong. When we get to the room the doctor who has already completed his rounds is back and informs me she need emergency surgery for a Pyloric stunosis..I am told the surgeon is on his way to explain. I called Michelle to get to the hospital NOW!!! I call the school to cancel my IEP for morning and let my family know we have this new turn of events. When the surgeon explains everything and leaves I am concerned with her having surgery locally. I call our Pediatrician he explains he would want this one doctor for her Anesthesiologist, and that person is not available so I am having high anxiety. I express my concerns an desire to schedule when the one Doctor is available and am told it won't work and i can transfer to Miami or St Pete right now but this will prolong surgery and she can not eat until surgery is preformed. I am a mess. The head nurse is outraged at my expressing a certain Anesthesiologist. Said I have to take who ever is on for that time in the hospital. My concern is that fr most surgeries we are sent to St Pate or Miami for our kids and now they say she is fine here... Yes this surgery is routine, they do one a week BUT SHE HAS THREE HOLES IN HER HEART! I am so scared. I have no idea what the answer is. The head doctor for the department of Anesthesiologist came t my room to discuss my concerns. When he got to my room I realize he is the son of a women I worked with for years at Children and Families. He understood my concerns and assured me he is assigning a skilled, experienced Doctor who Emma will be in quality care for surgery in the morning. He stated that if Emma's heart failed in Miami or St Pete the would not have a heart surgeon right there that they too would stabilize her and call a heart specialist... same as in Ft Myers.. He said she would go life flight if needed to a higher skilled facility is anything went wrong but he said he has consulted with her heart doctor locally, her pediatrician and all those who are involved now nd he is confident we have the team locally to do this surgery ad if he has the slightest concern he would be sending us to a higher skilled facility as the same said by the surgeon doing the operation. I then talk to the surgeon who now says he does not feel comfortable doing her surgery since I have lost trust in him...I am a real mess at this point and try to explain why I need all my questions answered to feel comfort in putting my little girl on the table.. I just did not want to loose her and no words from anyone could help me. Call me selfish, I want her in my arms tomorrow....alive and well.
Monday May 4th
Emma is not shaking the fever, she is on IV, Tylenol and two types of antibiotics. She is looking weak and not my perky Emma who smiles when happy. I alert home that we are staying more days until they can get her fever under control. Michelle has come out to the hospital. We are showing the nurses how her bottom puckers when she has a BM and they seem concerned as well...then they see her vomit after feeding then the curdled formula after three hours of feeding....they cal one time it thrush...I do not believe it to be thrush because it wipes right off. I discuss things with the on call
Sunday May 3rd,
Emma did not wake up all night...When I rolled over to see the alarm clock showing 6 am and I had not fed her I ran to the front room to check another clock for accurate time. It also shows 6 am..I go back to pick up Emma and she does not wake easy. With touch she seemed very hot, fever 103.6 under her arm, I called her Pediatricians after hours number, they took the information and sent me to ER. In ER it was apparent no one knew what was causing the fever. They did all the tests to find what was causing the fever. Everything is coming back negative so they declare it a "virus" and tell me she is staying for 48 hours until all tests come back. Erin is holding down things at home, Mandie and Michelle are on stand by if she needs any help. Mandie picks up Jordan so the morning goes easier for Erin getting all the kids on the buses alone. Er took until 4 pm to get us up into a room...6 am to 4 pm in Er was INTERESTING....
Jordan turns 9 years old....
Saturday May 2nd --- We celebrated Jordan's ninth birthday in a Pirate theme. He was thrilled and all party goers had a great time. We played in the pool, had a treasure hunt, many out door activities with the pool the focus for the afternoon.
Tessa's dress fitting is at 10am, then ears to be pierced and off to take Emma to the eye specialist at 1 pm and Tressa to the ear specialist at 2:30. The dress is BEAUTIFUL! Her ear piercing went well and she chose a ring to wear for the wedding as well. I could not be in two places at once so Mandie is taking Tressa and I am taking Emma to her Doctor's. Emma's appointment at 1pm lasted till 4 pm as he is having some issues on her eyes he said she is far sided which is unusual for kids with Down syndrome although he sees all god...BUT he wants to see her i four to six weeks..tells me to fit it around her heart surgery if needed. OK, I am not stupid....NORMAL eyes do not need seen in four to six weeks... but he said it is just his need to watch her.... SO I scheduled for the week the kids are in camp June 17th.
Thursday May 7th Emma is feeding well, I want to go home.. She has eaten like they said if she did you go home.. She has been hooked to machines she wants to me loved on free of all the cords and needles..alarms going off etc. Both doctors come at the same time and release paperwork starts.. I inform home we are coming. It took a few hours as I packed the room had everything in the van except Emma...I want to go home!
Wednesday May 6th We would be going home today but because I requested the additional test we are instead heading to Pre Op. I am scared. I have cried all night, I just want to hold her for the hour I have until surgery...BUT OMG.... they are here...I ask what are you doing... 8 am.. Surgery is 10:45am. They look at me in shock. Ma'am you do not know your daughter is going for surgery???? I said yes, but it is at 10:45 and I have family and friends coming to be with me..Well they have an opening in their schedule, she is going now... I had just gotten Emma on me to cuddle and talk .. I am numb. Tears just flow as I keep silent. I did not want any more uproar over my asking questions..the decision was made to stay and I need to be brave. Entering Pre op the nurse shares she is aware of my concerns and all that happened last night by my asking questions and demanding answers to make me feel I am doing the right thing by staying local. She assures me EVERYONE is aware. I get to hold Emma and I am holding with all my love...Connie walks around the corner and said se woke up feeling I needed her and she came.. I felt so good that she was there. It all happens so fast and she is wheeled away... I have one hour which seemed like a half a day or more before the surgeon came out to say it all went very well. Nothing unexpected. I felt relief and wanted to hold her...in a half hour thy came for me to say she is back up in her room... Connie and I ran to the room to be by her side. We spent the day holding her as she could not eat until 6 pm and she sure was hungry. At her 6 pm feeding she ate it in seconds.. kept it all down and we cuddled till 9pm...The 9 pm feeding went equally as well so we cuddled till midnight.. She ate and we bedded down for sleep. Yes she was laying on my chest. I feel soundly to sleep and knew I needed to get her in her bed so I did not drop her.. The nurse fed her at 3 am and woke me at 6. All is going well..
Tuesday May 5th, The doctor said that he wants one more day of antibiotics because of her conditions she needs the extra because hey did not get any conclusive answers to the cause of the fever..so to be cautious we will stay over to tomorrow and then go home. Because I believe we got the virus by sitting in waiting rooms I request that we go ahead with the Gird/reflux test since we are staying any way. He agrees and orders us for upper GI at 1 pm. When we go for the test I can tell as the test concludes something is not Right..we go straight to a sonogram of her tummy immediately. That person isn't talking, just said they will discuss everything when I get back to the room... then I am pushed to the hallway to wait fora transport person...I so wanted to go by myself to the room and cry..I just know something is wrong. When we get to the room the doctor who has already completed his rounds is back and informs me she need emergency surgery for a Pyloric stunosis..I am told the surgeon is on his way to explain. I called Michelle to get to the hospital NOW!!! I call the school to cancel my IEP for morning and let my family know we have this new turn of events. When the surgeon explains everything and leaves I am concerned with her having surgery locally. I call our Pediatrician he explains he would want this one doctor for her Anesthesiologist, and that person is not available so I am having high anxiety. I express my concerns an desire to schedule when the one Doctor is available and am told it won't work and i can transfer to Miami or St Pete right now but this will prolong surgery and she can not eat until surgery is preformed. I am a mess. The head nurse is outraged at my expressing a certain Anesthesiologist. Said I have to take who ever is on for that time in the hospital. My concern is that fr most surgeries we are sent to St Pate or Miami for our kids and now they say she is fine here... Yes this surgery is routine, they do one a week BUT SHE HAS THREE HOLES IN HER HEART! I am so scared. I have no idea what the answer is. The head doctor for the department of Anesthesiologist came t my room to discuss my concerns. When he got to my room I realize he is the son of a women I worked with for years at Children and Families. He understood my concerns and assured me he is assigning a skilled, experienced Doctor who Emma will be in quality care for surgery in the morning. He stated that if Emma's heart failed in Miami or St Pete the would not have a heart surgeon right there that they too would stabilize her and call a heart specialist... same as in Ft Myers.. He said she would go life flight if needed to a higher skilled facility is anything went wrong but he said he has consulted with her heart doctor locally, her pediatrician and all those who are involved now nd he is confident we have the team locally to do this surgery ad if he has the slightest concern he would be sending us to a higher skilled facility as the same said by the surgeon doing the operation. I then talk to the surgeon who now says he does not feel comfortable doing her surgery since I have lost trust in him...I am a real mess at this point and try to explain why I need all my questions answered to feel comfort in putting my little girl on the table.. I just did not want to loose her and no words from anyone could help me. Call me selfish, I want her in my arms tomorrow....alive and well.
Monday May 4th
Emma is not shaking the fever, she is on IV, Tylenol and two types of antibiotics. She is looking weak and not my perky Emma who smiles when happy. I alert home that we are staying more days until they can get her fever under control. Michelle has come out to the hospital. We are showing the nurses how her bottom puckers when she has a BM and they seem concerned as well...then they see her vomit after feeding then the curdled formula after three hours of feeding....they cal one time it thrush...I do not believe it to be thrush because it wipes right off. I discuss things with the on call
Sunday May 3rd,
Emma did not wake up all night...When I rolled over to see the alarm clock showing 6 am and I had not fed her I ran to the front room to check another clock for accurate time. It also shows 6 am..I go back to pick up Emma and she does not wake easy. With touch she seemed very hot, fever 103.6 under her arm, I called her Pediatricians after hours number, they took the information and sent me to ER. In ER it was apparent no one knew what was causing the fever. They did all the tests to find what was causing the fever. Everything is coming back negative so they declare it a "virus" and tell me she is staying for 48 hours until all tests come back. Erin is holding down things at home, Mandie and Michelle are on stand by if she needs any help. Mandie picks up Jordan so the morning goes easier for Erin getting all the kids on the buses alone. Er took until 4 pm to get us up into a room...6 am to 4 pm in Er was INTERESTING....
Jordan turns 9 years old....
Saturday May 2nd --- We celebrated Jordan's ninth birthday in a Pirate theme. He was thrilled and all party goers had a great time. We played in the pool, had a treasure hunt, many out door activities with the pool the focus for the afternoon.
Friday, May 1, 2009
CATCHING UP ON THIS BLOG IS SOMETIMES HARD TO DO BUT ALWAYS ON MY MIND...
catchy title to a song down the road..lol
Emma's doctors appointment did not go as well as I had prayed it would. They actually located a third hole and this gave reason to the labored breathing and difficulty clearing her lungs. We are no on the fast track to surgery. More will be decided when we visit the heart surgeon on May 18th. The first appointment he had as he is on vacation or at least not in the office until the 18th...ugh
We wanted to let all those who have known about the baby which was said to have Trisomy 18 we found families to take was born two days ago and is perfectly healthy thriving little boy. It was a mad dash to locate a young couple who wanted to adopt because they can not have children of their own..WE FOUND THEM.. they are coming for him soon as they live in NY and more paperwork needs complete. WE are hosting the little guy loving on him until his new mommy and daddy get here. Michelle is his caretaker since my hands are full with Emma and all. The kids know we are "babysitting" for his parents can get him. He is a very beautiful baby boy. I do not know his name to be so it is difficult cooing when a baby has no name yet.
Tomorrow is the Birthday party of pirates. We are keeping it to family and close friends because of the flu and a child here possibly having it local. My baby's are too fragile medically to get exposed so we are playing it extra safe. Lots of party activities and we have the kids here so all will be FUN FUN FUN.
catchy title to a song down the road..lol
Emma's doctors appointment did not go as well as I had prayed it would. They actually located a third hole and this gave reason to the labored breathing and difficulty clearing her lungs. We are no on the fast track to surgery. More will be decided when we visit the heart surgeon on May 18th. The first appointment he had as he is on vacation or at least not in the office until the 18th...ugh
We wanted to let all those who have known about the baby which was said to have Trisomy 18 we found families to take was born two days ago and is perfectly healthy thriving little boy. It was a mad dash to locate a young couple who wanted to adopt because they can not have children of their own..WE FOUND THEM.. they are coming for him soon as they live in NY and more paperwork needs complete. WE are hosting the little guy loving on him until his new mommy and daddy get here. Michelle is his caretaker since my hands are full with Emma and all. The kids know we are "babysitting" for his parents can get him. He is a very beautiful baby boy. I do not know his name to be so it is difficult cooing when a baby has no name yet.
Tomorrow is the Birthday party of pirates. We are keeping it to family and close friends because of the flu and a child here possibly having it local. My baby's are too fragile medically to get exposed so we are playing it extra safe. Lots of party activities and we have the kids here so all will be FUN FUN FUN.
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