BM

Oh and she pushed the "go potty" button and Sadie's attendant got her to the bathroom in time to go BM on the potty.
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Juice

Sadie just pushed juice on the twin talk and brought me the vecroed picture saying more (moe moe moe).
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Typo

Meant didn't in place of did with respect to if this originated from me or daddy.
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Getting it

Would it help you to get it if I say...
90% of oral language development is finished by age 5...Sadie will be 5 in April and says mama dada aahhh (open) moe (more) daaaiee (Daisy)
Genetically, she will NEVER be able to have children, assuming that she is able to reciprocate in a relationship.
She will not go to college.
She doesn't poop in the toilet.
She would just as easily pee in a diaper as on the carpet.
She CANNOT dress herself AT ALL.
She cannot go up/down stairs unattended.
She will pull a hot pot of water on herself (she doesn't understand danger).
She will wrap a cord around her neck.
She will put chokable objects in her mouth.
She looks normal, but her brain is not working properly.
Please don't be in denial, it is what it is, we deal with our lot in life.
We love her sooo much and she has accomplished so much in her own small ways. We are so proud of her, but listen people ... Do you hear me? We all are not the same and we are heartbroken that our daughter did not have normal genetic material. If you wonder...or ask like some do...no it didn't come from me or my husband. It was a random occurrence.
And we do love her so much, but that doesn't change the irritation when people starr because she is baby babbling or looking at her funny in the grocery cart because she is trying to bite the frozen green beans. She is different, but the most important thing to remember is the reality of her is that she IS intellectually disabled, but she is a little girl that loves and feels and she belongs to us. Ignoring her disability only pains us and we are open to discussion. But how many times do I have to explain the same thing to the same people. Just love her and don't ignore her that's all we ask.
Enough of my soap box.
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Cardiology Appointment

This morning Sadie's Cardiologist said he was unable to get a good look at the holes in her heart (ASD, atrial septal defect; VSD, ventricular septal defect) because Sadie would not lay still enough during the ultra sound. Therefore, Sadie will be going under sedation at the children's hospital for a 30 to 45 minute thorough ultra sound sometime in January. The Cardiologist will also have scheduled a catheterization (at the same time) to repair the ASD hole at the same time IF it is found during the ultra sound that the hole NEEDS to be repaired. The idea is to sedate her once and just do the repair rather than tell us the results and do the procedure later. Best case: sedated ultra sound. Worst case: catheterization and repair the hole, which is called an Amplatzer Device (http://www.amplatzer.com/products/asd_devices/tabid/179/default.aspx ). Both of which we will be prepared for the same time if needed. This is obviously surprising news, but the doctor has reassured us that with all procedures there is risk, but that the catheterization repair is performed by a well trained Cardiologist who does nearly 50 a year.
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The tree

Sadie has been soooo good with the Christmas tree. She has become very taken with a few ornaments, which Shelbi promptly runs over to rescue and asks me to move higher. Other than that she hasn't tried to grab it or drag it or knock it over.

Happy Girl

Hugging the giant stuffed monkey.
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New things...

Sadie has been showing more interest in the TV. She NEVER EVER used to watch it EVER. Snow White has captured her attention on the DVD at home and in the car.

A few days ago I signed and said No to Sadie, she responded with a modified sign of no and made the "n" sound. It was so awesome to see her copy me. That was the first time she's ever signed NO. Her only sign is more and clapping her hands for yes.

Saving the best new thing for last...Sadie got out of her bed at nap time on Monday. She managed to unlock the latch within a minute of being put down. When I left her room she was happy and laying down. I made a drink and walked to the sofa to catch up on my DVR shows. I immediately hear her calling MaMa in the kitchen. I couldn't believe it.

Well, sadly, this was end of nap time. I guess I was thinking it would end sooner or later for her, after all she'll be 5 soon. The big new thing happened at bed time when I went to lay her down. She had a normal developmental response and didn't want me to leave her. I guess this happens a lot earlier in life Shelbi always had separation anxiety, but Sadie was always happy to have her space at nap and bed time. She went completely hysterical and cried so hard. I couldn't bare to close and latch the door after that so I got the drill and took the door off. After 3 hours of her crying and using the Super Nanny back to bed routine, she finally fell asleep on the poof chair in the room adjoining her room. I picked her up while she was sleeping and laid her in bed. The next night we went through the same, except I attached a gate with eye bolts and cable ties around and to her bed. So the most logical place for her to go would be to stay in her bed. It worked and she cried 50 minutes. By Wednesday night she fell right to sleep after laying her down and she didn't cry at all. She went right back to her normal 11 to 12 hour nightly sleep. I am really missing the 20 minutes to an hour nap time in the middle of the day though.

Age

I just realized that today Sadie will be 5 years old in exactly 4 months. Wow! I love you baby!

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Sometimes

Sometimes I wish Sadie had a physical marker for her disability. It is exhausting explaining a chromosome disorder and Intellectual Disability to someone who sees nothing physically wrong with her. No one seems to understand and it is getting very frustrating. And they really don't care to understand. Everyone goes about their life in their own bubble secretly thinking this can't happen to them and pretending it doesn't exist or affect them. Oh shall we all be so lucky to be so naive.

If raising children is supposed to take a village then it is awfully lonesome. Thank goodness Sadie has a Medicaid waiver.
Sincerely,
A mother with a disabled child and everyone else is too afraid to touch her. She is the most wonderful, innocent child, full of kisses and hugs, eager to be held, and eager to look you eye to eye with her big blue eyes. I would trade anything to give her the power to learn.
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Sooo tired

Sadie's 2 therapy sessions wiped her out, she fell fast to sleep in the car on the way home.
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Santa at the Aquarium

On November 29, we saw Santa at the Aquarium. Sadie doesn't understand Christmas or Santa yet, but she did have fun meeting someone new and saying hello. She blew Santa a few kisses and sat in his lap for a minute.

I'm so excited that Shelbi is interested in Christmas and Santa. It seems a long time coming for me to feel excited about having children during the Christmas season. I was so eager to do all the fun thing you do with children this time of the year that it has been disappointing to know that Sadie doesn't understand, but at the same time so joyful to see Shelbi show interest. And while Sadie might not really understand, she is enjoying going to see the man in the big red suit and getting joy out of seeing him either way.

Oh, this can't go without being said...Santa waved Meggie over to sit on his lap...honestly Santa?

staple removed

Sadie had her staple removed from her head November 27, 8 days after getting it put in. I got myself completely worked up about having it removed. When we went in to the exam room, I warned the nurse that Sadie would be difficult and she would cry and that she needed backup nurses to hold her down. Two other nurses came in and we looked at each other trying to get a game plan for the removal. I was holding Sadie in my lap facing me. Mary, our favorite nurse, wanted to see where the staple was. Sadie was so calm and when I lifted her hair the other nurse said quick pull it out (with the removal tool). Within 2 seconds the staple was removed before Sadie even budged. I was so relieved.

Sadie on the tricycle at PT

Sadie on the tricycle at PT.  Would you be surprised to hear that these bikes run from $400 to $1500 depending on the amount of adaptation.

Coffee Tables and Staples Oh My!

Yesterday was one of those unexpected, yet predictable days. Sadie fell and hit her head. I think I even just told Sadie's Attendant the other day that I was feeling like something was about to happen...its been a while since she’s hurt herself.


The week started pretty normal, except Sadie woke with an unusually runny nose. I assumed it was allergies, after all, we were raking the leaves on Sunday and Daddy power-washed the green grime off the front porch. Even I was feeling a little stuffy and I knew it was because I raked the back yard. You know the times when you shouldn't do something, but you do it anyway. Well, I should have let Daddy rake because I get a sinus infection every time. Anyway, back to Sadie. We sent her too school with allergy medicine in her system and she had a good 3 hours at school (according to the teachers). Tuesday morning she woke with Croup. There was no need to panic or to be alarmed, this was the 4th time in her life. I did call the doctor to make an appointment because I just can't tell if she has any other symptoms. She is nonverbal and has a very high pain threshold so it's all and educated guess at this point. The doctor confirmed Croup and said that her ears, throat, chest all sounded good and that I should just continue to monitor her for trouble breathing. I should also give her steamy showers and run a humidifier at night. Croup and her Cold continued through the middle of the week and she continued to miss school.

So on to Thursday's drama...Shelbi was watching Annie, which she is absolutely addicted to right now. Sadie was wandering around the family room and the playroom as usual. Sadie tried to crawl up on the couch in front of Shelbi. Sadie tends to just randomly walk up to Shelbi and pop her in the head, which she did...Shelbi cried out and yelled, "Stop Sadie." She proceeded to full force push Sadie off the couch. Honestly, I can't say that I blame her too much. If Sadie had more balance and control over her body, she might not have fallen back so hard. She landed on the floor and her head hit the bottom edge of the coffee table. I was about 10 feet from her when she hit and it sounded like a block of wood hitting the table. I of course rushed over and picked her up. I felt around her head to try to figure out if she was bleeding. I got blood on my hand and it dripped on the back of her shirt. I lifted her hair up and saw that it didn't seem that bad of a cut, but the sound of her hitting just made me feel like she must be really hurt. I called the doctor's office and they asked me to bring her right in.

The nurse looked at Sadie and said she looked fine, but she wanted her pediatrician to look at it just to be sure. The doctor came in and said she looked fine and gave me a lecture about the height of the fall probably didn't hurt her. She told me to watch for vomiting and other symptoms of a head trauma. We got in the car and Sadie started to doze off, I took the long way home and decided to drive around a bit to ease my nerves. She woke a few times gagging, which freaked me out. After being in the car for about 45 minutes she vomits ALL over herself and my car. I immediately call the doctor…we go to the children’s hospital emergency. She was assessed and we decided to let her stay a little while for observation rather than exposing her to the radiation of a CT scan. (1-2% chance of brain tumor later in life). It had been about 7 hours since her fall and we were getting ready to go home. The nurse and the doctor started cleaning her wound and we surprisingly discovered that it was small, but VERY deep. The doctor basically pressured-washed the area and gave her a staple to close the wound. Of course anyone reading this can imagine that Sadie was being held down on her tummy, she was hysterical and so was I especially when the word “staple” was used. Thankfully, that was the end of the trauma and the drama. We were sent home with discharge papers. We gave Sadie Motrin and she slept through the night.

She still has her cold, but the Croup cough is gone, and she walked away from the day with a staple in the back of her head.

Our morning at the Aquarium

Veteran's Day ... Thank you to all the people who serve(d) our country.

We spent the morning at the Aquarium. Both girls had a great time, but I must be crazy to go by myself without any help!

I had to carry Sadie about half of the time because she will run away.

Our favorite parts were the baby Sea Horse, Sharks, and Sea Turtles!

We are now home and everyone needs a nap :)
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At the beach last weekend. Sadie loves to chase the sea gulls and yell baba for bird.
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I don't know why, but I love this photo.
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PT

Sadie did a super job bicycling down the hallways at the chkd PT office. Her first time pushing the pedals (velcroed to the pedal). She went about 60 feet!!! Sadie I'm seeing a 3 wheel bike in your future for Christmas! :)
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Halloween 2009

Sadie dressed up as a Fairy along with her sister.  We attended the Down Syndrome Halloween Party and then our neighborhbood Halloween Parade/Party.  Afterwards, Daddy sat at the driveway and passed out candy.  The girls went Trick or Treating with me and our neighbor Joyce.  Sadie mostly hung out on the driveway with Daddy and Nanny.

Sisters

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Implications

I'm realizing the implications...she may never read, write, have conversations...it is overwhelming to know this.
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Baby stroller

Sadie loves to sit in the baby doll stroller.
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Lots to Report

Lots of wonderful things going on around here.  First of all, Sadie has continued to say, "dada."  As with the other few times that she said it, I was so hesitant to get too excited, but it really does seem like "dada" is her newest word.  So far her vocabulary includes mama, baba (baby), baba (bye bye), uhhh (up),  moe (more), awe (all done), approximation of Daisy that just sounds like loudly saying "ahhhh."
We had several follow up doctor appointments in the past week also.   We saw the rehab physician, who is working on getting Sadie a bigger car seat and bigger stroller.  We got into a debate about whether a 4 1/2 year old will sit for a meal and throw food.  She argued that Sadie didn't need a bigger/toddler high chair that she should be able to sit in a chair.  Well yes she sits in a chair with the table up to her chest because she doesn't sit on her knees. So in my opinion she would greatly benefit from another chair.  After all, our insurance allows money for special needs equiptment, shouldn't we use it.
Both girls had their routine dental appointments and they both look good,  Sadie's front teethh look great after her face plant in the hardwood floors a few months ago.  One tooth was half way hanging out and was gently pushed back in place.  Thank goodness they look good.  People always comment about her beautiful teeth.  She's lucky.
Yesterday, Sadie saw her GI doctor.  She continues to take her Prevacid twice a day for reflux.  I'm considering cutting the tabs in half and seeing if she can tolerate a lower dose.  He was pleased at her 2 1/2 pound weight gain in the past 6 months.  She went from the 5-10% to 25th% for her weight.  Luckily he doesn't plot the height and weight against each other like the geneticist does.  She always fusses at us for Sadie's thin figure.  We haven't given her Periactin to stimulate her appetite in months.  She has a new interest in food and eating.  It is a relief to see her eat after the stress of feeding her in the first 3 1/2 years of her life.
October 20th, we see a new cardiologist.  The last time we saw that doctor, Sadie had just turned 3 and we were told that he felt pretty certain Sadie would NOT need heart surgery.  He recommended we see him in 1 to 2 years.  Unfortunately, he moved to another hospital over the summer and we will be seeing someone different.  Dr. S was the first physician we took Sadie to see when she wasn't even 22 hours old.  When they rushed us out of the labor and delivery room and sent us straight to CHKD.  I was stunned and the nurse told me if she were in danger we would have been transported by ambulance and we were okay to drive her ourselves.  She was only 21 hours old on her first car ride to the children's hospital.
As for school, the preschool partners (typically developing peers) joined Sadie's class this week to make 6 special ed students and 6 typical students as models.  I know the teacher and other students will be adjusting to a busy class.  I hope the pilot program goes well.  Sadie loves other children and enjoys watching them.  She is so curious.
Now that I have a new netbook, I can hopefully post more often.  Until next time..,

BM

Tears of joy, Sadie had a BM on the potty at school today and at home a few times this week!!! Yay Sadie!!!
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Dada

Sadie has randomly said Dada just a handful of times in her short 4 1/2 years, but tonight she said Dada over and over and over again. She stood in the hallway and literally yelled Dada toward the family room where he was sitting with Shelbi. I just kept encouraging her by saying where's Dada and say Dada while pointing to my mouth! Such a wonderful feeling!!! I can only imagine how happy that makes Daddy.
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Sisters

Delayed Response

Dear Friends and Family,

Forgive me as I am typing on my Blackberry. If I had only gotten a Netbook and a cheap phone, I'd be typing easier on the comfort of my couch rather than getting a cramp in my pinky finger while I try to hit the right keys with my thumb nails on my phone.



Sadie's EEG results came back after the Labor Day weekend...NORMAL!!!! Yay!!!!



So this means, she is having little quirky behaviors. I guess that's not too bad. It just gives people more to stare at?!



As far as school goes, she is having a wonderful time and seems to have adjusted well. (Ouch my pinky is hurting). She is attending a Reverse Mainstreaming class (Inclusion) Monday to Friday. The teachers are amazing and so is the speech therapist. Sadie is working on many functional skills and assistive technology (buttons that say words for her). She is getting OT and PT also. I'm really enjoying my time with Shelbi especially knowing Sadie is being taken care of so well!!!

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Pics

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Happy and excited

Always!!!
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School Starts Tuesday

On Tuesday, Sadie is attending public preschool in a pilot program called Reverse Mainstreaming. The goal is to have an inclusion class for the preschoolers. They are having 6 special ed students and 6 typical developing students as models in the classroom. We are so excited to have Sadie in this new program. She is such a social and happy little girl. We want her to enjoy life and learn from seeing her peers do regular and normal activities. Yay!!!

Speech

Having fun in the ball pit at Speech therapy!!!
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EEG LAB

The video monitored EEG went pretty much as expected, the only difference this time is they used a type of super glue to keep the wires attached to her head. The tech was awesome with Sadie. She took us back to the room where she laid Sadie down on a hospital bed and wrapped her in a blanket burrito. We decided to use the glue instead of the goo because one tug would pull the wires off. The tech mapped out her head with the red grease pencil and then prepped each of the 26 spots for the electrode wires. Each wire has a small metal disc attached which is then placed in the goo or in our case she laid it on her head covered it in gauze and squirted the glue on the metal. Immediately after that she used a small air blowing thing and held the end to blow on the glue so it would quickly dry. The glue smelled like super glue, which she said it was similar to. After all 26 spots were finished, she wrapped Sadie's head in gauze. She wrapped all the wires together in gauze too and attache that to really really long wire. All of that was put in a backpack and we were sent into "the room." It was the size of a really small bedroom. There was one twin bed, one recliner hospital chair, on child size table and two chairs, a TV, and a sink. There were two closets which held too many toys and too many small parts. No child needs to dump a box of miniature sized legos all over a room. But we did. And the rest of the toys came out and made a huge mess.

Bill and I took turns going out for a break. Our main objective was to keep her in view of the camera and make sure she didn't pull out the wires. We succeeded!!!

Four hours later, she had a couple of her "episodes" and we were back to the other room to remove the electrode with straight Acetone. So much for all my organic food and not exposing her to chemicals. We were sent home. We expect to get some news Tuesday!

Her head has been pretty sensitive, obviously and she looks like she has a bad case of dandruff because the left-over glue hasn't come off yet.

Another test behind us.

cleaning and the flu

and the flu panic begins...

http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf

Wawa park

Sadie loves the slides in the kiddie part of the water park. She climbs the steps and goes down all by herself!!! Yay Sadie!!!
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Neurodevelopmental Pediatrician Appointment

Dr. Montgomery was more than excited about Sadie's progress, since our last evaluation......at which time he had noted that everything with her seemed poised and ready, but patience might be best....he seemed confident, then, that it would be a matter of time before she started reaching some of the expectations he has for her.........we had begun to grow very concerned and anxious.
After this weeks evaluation, he described her progress as 'explosive' and referred to her as now being considered as 'stimulable' (in a nutshell, more aware and respsonsive), which is huge, with respect to how she will be perceived by therapists, etc.! Being 'stimulable' and still being in the more formidable age range, should help us secure more aggressive therapies, through school, etc. He referred to her as an ideal candidate for the new, Pilot program (Reverse Mainstreaming), that we have her set for at Birdneck Elementary this year, and encourages us to continue everything that Lisa has focused on (ie, Assistive Technology devices around the house to help with communication).
He's a great doctor, who is optimistic and realistic.......and loves Sadie......and seemed genuinely excited about where she is now and who she may develop into to, over the next few years.

Daddy.

Seizure or Behavior

Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past month I have been noticing them more frequently. I assumed it was her quirky way and just part of a special needs personality. I think we all know what I mean when I say some people with special needs sometimes have quirky arm movements like tics. I started to get worried a few weeks ago when one night they happened at the rate of 1 each minute lasting for over 25 minutes. She would even hand me her cup of milk to do this hand arm mouth clinch movement and then get her milk back from me when it was over. I called the neurologist the next morning and she got us in as quickly as possible (2 weeks away). Ironically, Sadie also had an appointment with a pediatrician in her doctor's group for a penny size skin rash that next day. Dr. B was lucky enough to witness one of her movements and said it looked like a partial seizure.

This leads me to the appointment with Dr. F (the neurologist) yesterday at the hospital's EEG lab. After describing to the doctor these movements and also showing him a very short video of one off my blackberry. He concluded that he just couldn't say for sure. That she does have ataxia (drunken walk) and tremors (she is shaky) and she may just be having behavioral stems. When he described a behavior stem and I asked him if it was similar to us stretching or yawning or getting the shivers. He said yes. He said she might be doing it because it feels good and that we should try to remove her from the environment (if she is sitting then we should lay down) and that might make her comfortable and she won't do the behavior. He proceeded to say that partial seizures come in clusters and he asked if I see more than one at a time. A cluster is anything more than one. I couldn't conclusively say that they always come in clusters, but I do know they are more frequent when she is tired. Sooooo, Dr. F determined that he couldn't rule out behavior OR partial seizure, but one way to find out was to have another EEG, yay!!! not! Dr. F's nurse called when we got home to let me know that the doctor didn't want another routine EEG (she's had 2 already) that he wants a 4 hour video monitor EEG. Yes folks, I did say 4 hour not full hour.

So on September 3 we will be arriving at the hospital at 7:30 am after sleep depriving Sadie (putting her to bed at midnight and getting her up at 6am). She will have her little head mapped out with a red wax pencil and then gooey stuff put on each of the "right" spots and 26 wires smashed in the gooey stuff on her head all the while she is wrapped in a papoose/blanket burrito so she can't move. All of which takes 20minutes. Then we will be put in a small room large enough to hold on twin bed and one recliner chair and asked to hold her and play all in the hopes that she also falls to sleep so they can read her brain during wake and sleep. Oh and her little head will be all wrapped up in gauze and she will look like she just had brain surgery all except for the 26 wire pony tail that will come out the the back of her head and be attached to an EEG monitor for the whole 4 hours. The nurse did say that the 4 hour is a minimum and that if they saw "stuff" going on that she could be hooked up longer.

Many thanks to Nanny, she will be watching Shelbi Wednesday night and most of the day Thursday.

Yay!!!

Speech eval

Sadie had an AWESOME person do her speech evaluation today! I'm so excited to work with her and Sadie!!!!
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Beach Days

sweetie would say

When I was growing up, there was the most amazing and wise man who lived across the street. I grew up in the country, so across the street was a 10 minute walk across 5 acres. When we were older we called him Sweetie, but as a kid he was Mr. Snyder. To my mom, he was James. This wonderful man knew many things, and he lived a great life with sadness and of course love and happiness too. He was a rock of support and words of advice. He was never judgemental and he always had a kind word to say. We spent lots of time with he and his wife growing up. He always smiled and never had a harsh word. You knew he would support anyone not matter their mistake because he knew we all make mistakes. That was the kind of man he was. I've been thinking a lot about him today because of the humble life he lead, the smiles that he shared and the wise words he passed on to my mother that she passes on to me. She might say in a time that I need comfort, "Sweetie always said a little bit at a time, baby, a little bit at a time." Many times in my life, I have come back to the words of wisdom that he passed on to me. The words that made life seem simpler. I think about the compassion he showed other people because he knew he didn't live in a glass house. People are cruel. People are compassionate. It amazes me. Sadie has opened my eyes that people have flaws and people are human no matter their genetic defects, tics, physical deformities,0 why do people have to be so cruel to people that just can't help the way they are. Oh ignorance is bliss. Life is life even if it isn't perfect.

Thankful

Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find any other families who write about their children. I know I do this when I'm feeling on the blue side. It always helps me to read about similar situations and find some comfort in other stories. The compassion that one mother has for another mother who also has a disabled child is an unbreakable bond.
Mostly my mood was prompted because my husband watched a 20/20 segment about a girl with Autism who they thought was severely disabled and unable to communicate. On day at the age of 11 she spontaneously started typing on the family laptop. The family had no idea their daughter had so much to say and she really was able to tell about her disorder in her own words. I'll post a link to her site soon.
So like I occasionally do, I googled chromosome disorder blogspot and family stories. I scrolled down the list and clicked on Noah's story. http://noahgrantjohn.blogspot.com/
I feel so touched and moved to have read part of Noah's story. He was born September 2005, the same year as Sadie. The first picture on his site was a picture of where he was buried last week. He wasn't yet 4, but he shares a common bond with Sadie...they were both born with RARE Chromosome Disorders. I feel so thankful that Sadie is here on this Earth and with us. Tonight I grieve for little Noah and his family. May they somehow find peace and comfort. My heart goes out to them.
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speech

We are having a new speech evaluation next week at a new therapy office...

Pretty Girl

This in one of Shelbi's princess dresses from her birthday! So Pretty!
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Debatable Postings

Sometimes I wonder if I should post real scenarios with the really people in our life. I would hate it more than anything to offend anyone, but isn't that part of sharing her story??? Does anyone really read this anyway?

So here goes...Sadie had a speech evaluation on Monday, which I consider to have been a waste of time. While the therapist giving the evaluation truly meant well, I would like to think that when I tell you she used a standardized test you will understand that that means showing a notebook to Sadie with a choice of 4 pictures. She said please point to..., but when I told her that Sadie won't do that or understand that she said well I'll ask her to circle it instead. When she asked Sadie to circle/pat the skunk. Sadie didn't respond to pointing/patting/or kissing the pictures. She simply wanted to hold the therapist's pen. I asked her what level she started on...she responded 4 year old....AFTER, I had already told her that Sadie's receptive language is 18-20 months and expressive language is 6-9 months old. AMAZING. Needless to say, She went to the beginning of the test and got NO results. I continued to explain that we want to focus on basic communication/sign language/picture choices with photographs/concrete objects.

Who wears the Pants?

This morning we were all sitting on the kitchen floor doing goodness knows what...making breakfast holding Sadie then holding Shelbi? Shelbi took her pants off a few minutes earlier when daddy put her on the potty. Somehow she got some pee on her pj bottoms? Either way, I told Shelbi to go get some pants out of her dresser, which she is usually interested in going to do. A few seconds went by and Sadie bolts off to Shelbi's dresser by herself all the while Shelbi and I are sitting on the kitchen floor. Just a few seconds go by and Sadie walks back into the kitchen holding 4 pairs of pants and throws them on the floor next to Shelbi and me. Two pairs of jeans and 2 legging type pants. My jaw hit the floor, not only did she go get pants, she got them out of the dresser drawer and brought them to us! WOW! Good for you Sadie! I'm so proud of you!!!

Love, Mama

Photo was taken a few weeks ago at Surf Camp for disabled and underprivileged people

The Skinny

Sadie has been off her anorexia medication that makes her hungry for 2 months. She hadn't been eating that much and I'd decided to just keep trying to push food on her rather than give her the medicine. The periactin is an antihistimine that was discovered to have a strong appetite stimulating side effect. It is used on anorexia patients. All things have a consequence and in her case it puts her a groggy cranky mood. Her temper tantrums increase and she just not happy.

Unfortunately, she's gotten that skinny look to her little body again and she can't bear to lose an ounce. She must have grown talls because I don't believe she's lost any weight.

I started giving her a small dose every other afternoon, which seems to be pretty effective right now. She's been eating better and I haven't had to work so hard to feed her.

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fighting

I'm watching my girls fight and wondering if there is any good reason other than them hurting each other to cut in. I guess the positive thing is they are doing what normal sisters do and that is fight over space and toys. Funny thing is that I'm not really even that affected, it is almost humorous watching them fight over the big purple fluff chair in the playroom. Life is somewhat normal...sibling rivalry...OK i take it back they are crying now... and I'm having to console!

Miss Independent

Driving me crazy! Funny how Sadie now spills her drinks less than her 2 year old very coordinated sister.
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Putem' Around Assistive Tech Device

One of those days

This morning has been one of those insanely stressful mornings. Our electricity went out minutes after I heard Sadie through the monitor. She was sweetly calmly listening to the Baby Einstein Aquarium crib toy. Unexpectedly, the electricity went off. I guess the only way you might expect that is if you didn't pay your bill. This was unexpected. Our house is secured with an alarm system, which obviously needs power. Needless to say, the alarm started beeping 3 beeps every 2 minutes running off battery. That was the beginning of the freaking out. Small unexpected sounds really affect her sensory processing. The beeping also signaled to the dog that the alarm might go off and and she started shivering and trying to get me to hold her too. Sadie at that point refused, absolutely refused to let me put her down. Every time I tried to put her on her feet, she arched her back and started freaking out. Holding a 34 pound 4 year old constantly isn't getting easy. My wrist is starting to hurt again after I finally started getting relief from wearing my wrist brace for severe tendonitis.
To top it all off, my cell phone didn't charge properly last night because the "baby proof" outlet cover didn't allow the proper contact with the plug. So not only is there no electricity, there's also barely a phone. It has made me realize I should buy a regular old land line phone for emergencies.
So I call Bill and quickly ask him to call our neighbor. Our sweet "grandmotherly" neighbor runs over to give me some help. Sadie absolutely LOVES her and immediately reached out for her when she walked in the door. It's like passing a crying child over to someone who you know can calm them. It is a relief!
After the newness of our neighbor wears off, 5 minutes, Sadie starts freaking out again. Continuing to arch her back and throw herself down when the alarm beeps. She threw her self back and hit her head on the seat of a bench and then really let loose with the wails and tears.
Finally, the electricity comes back on and the only thing on my mind is getting that coffee maker on!!!
As the morning goes on for the next hour, Sadie manages to squeeze her juice box on the floor, crumbly a whole chocolate chocolate chip cookie in her mouth and spit the whole thing out in a 3 foot area, strip down to her birthday suit 2 times, flip off the couch backwards, and drool a red Flinstone vitamin all over our white tile kitchen floor. As for the juice box and cookie at 9 am, I will give her what ever it takes to calm her down and make her happy. It is just not worth it and I choose my battles wisely.
Meanwhile, we are in the playroom and she is wandering around and calm for hopefully a few minutes longer, so I can finish my venting and find strength to make it through the next 40 minutes. Nanny is picking her up at 11 and I can't wait!!!
Oh and I must give credit to our other sweet angel for handling the situation with grace.
Gotta run, Sadie is now stripping for the 3 time, time to alter some more clothes so she can't get out of them.

sadie

Yesterdays 'test' message was a mobile test from my phone. So cool that I can send blogger a text and it will post to sadies blog.
Some new things with Sadie...she signed her own variation of shoes a few days ago. We watch signing time a lot. So after seeing the song segment on shoes, I asked her to sign shoes. It was so sweet. We just need her to functionally learn and use milk, water, eat. On a positive side, we've been using the one picture switch and she really seems to be picking up on the idea of pushing the milk picture and hearing it say "milk."
She has been very clingy lately leaving me feeling like a mama monkey at the end of the day. Her arms wrapped around my neck and her legs gripping my hips, she doesn't give me a second alone. I increasingly feel guilty as I see Shelbi fight for her own place. Which is why I let her stay up later, she has been harder to get to sleep because I love to cuddle and read to her when Sadie is already in bed. I often wonder how Shelbi will be shaped by her sister's disability.

Test

Blueberry Picking

We went Blueberry Pickin' with Memaw on Wednesday. The girls had a great time. Sadie mostly rode in the wagon, but Shelbi had a great time picking and eating. It was really hot and both girls got super red faced. We picked a small sand bucket full. Meghan also joined us, which always makes the outings more enjoyable!

After about an hour we had enough of the heat. I had to put cold water bottles around Sadie and Meghan rubbed her head with an ice cube. She doesn't regulate her body temperature well, so she over heats easily in the summer. Same goes for the winter season, she gets cold fast and her hands and feet turn purple.

Afterwards, Memaw treated us to a chicken stuffed pizza from Pungo Pizza, it's a locals favorite! Sadie was definitely over stimulated and had a minor breakdown in the restaurant. She doesn't eat well outside of our house, but she was hungry. She got feed when we got home. Shelbi enjoyed her pizza, I did too, but it is stressful taking them both out.

Signing

Sadie has been signing "more" constantly and saying, "momomo" (more) the whole time she is signing it. She's even using it appropriately too. But it is also taking the place of want and being generalized. I'm just so glad she has realized that when she signs and says mo that she is letting us know she wants or needs something!

Last week, Meghan told me she signed doctor (you point to your wrist like you are feeling for a heart beat). I just thought that is such an odd sign for her to know. Granted we do say doctor a lot and we do go to lots of doctor appointments. I really thought she'd sign something else like milk, drink, cereal, or something I use daily. But sure enough, the other day, I said doctor and Sadie started pointing to her wrist...amazing!

On Friday, we were in the baby pool on the deck, the birds were chirping and we were just enjoying the nice weather. Sadie started looking around as if she was listening and she started pinching her pointer and thumb together and signing bird. I asked her if she heard the birds and both hands just started signing bird...wow what a great feeling. I will be so thankful if she can sign to us. Everyone will have to learn...which I've been saying for 3 years =)

Sisterly Love.

Mooosic

So the girls rarely watch TV and it is really not for lack of trying on my part. They just don't seem to be interested. The only thing Shelbi will watch is Signing Time.

So this morning, I turned on Sesame Street...Shelbi said nooooooooo...moooosssic. Who's that sound like? My husband.

I change the channel to 902. We love digital music around here, but I can't remember what type of music is on 902. I just figure that's a good place to start. The 900's are the music channels. Both girls are sitting on the sofa, one on either side of me. The second the music comes on, I see it is the Hip Hop R&B channel, both girls hop up and start dancing. Daddy will be so proud!

DaDa

Wow, what a great day. Sadie has been signing "more" for the past 2 days!!! She also ran up to daddy when he got home from work yesterday and said "dada." Mama comes more naturally to her and we rarely hear her say "dada." We were so excited to hear it!!! She also started jumping with both feet coming off the ground. Great accomplishments Sadie!!! I love you.

Summer Plans

There's only a few more days of school left before summer break. We aren't sending Sadie to ESY (extended school year) with the public school because her teacher doesn't believe it will be a good transition for Sadie. We also decided that sending her to the private summer program would take away financially from our family and we can all do a lot with the money rather than go directly to Sadie. Sometimes everyone has to have a equal vote. With that said and as much as I love her dearly, we had to find something for her to do to have a break from our house.

She will be attending a animal/farm camp for 2 weeks from 9am to 12pm. They were wonderful enough to allow our attendant to go with her. She will also be attending MyGym summer program, which is the same hours. They are also allowing Sadie's attendant to join her.

In addition to that, we plan to go to the water park a few days a week, the zoo, and also the aquarium!

So far we have been spending a lot of time swinging on the swing set in our back yard and playing on the deck.

We did have our environmental modifications done to the house and they turned out good. First we had a child height rail put on the front and back deck stairs and also on the stairs inside. We also had gates put up at the stair entrances on the back deck. They installed "pool" locks on the gates. This has been great because I can open the kitchen door and the girls can play on the deck while I make breakfast. Sadie has also been able to go up and down the stairs all by herself because she has a rail to hold. Of course, I still have to be near and I've caught her a few times before she has fallen. I think with time and practice, she will be able to maneuver the stairs on her own. They also built crib style doors for her bunk bed so we can get her out of her crib and into a "big girl bed." I'll post pictures soon!!!

Drooling

Sorry, I realized I didn't follow up after our appointment with the Plastic Surgeon about the Drooling.

Turns out the surgery to “tie off” the salvation glands is not as simple as the geneticist made it sound plus it is permanent. He also gave us an alternative to inject Botox in the gland to paralyze it for 3-8 months, but he couldn't guaranty the Botox wouldn’t get in her facial muscles and therefore affect her appearance.

I did some research and the conclusion is that you shouldn’t take such dramatic steps until you give the child enough time to get control of swallowing (after the age of 6). The dentist who saw her a few weeks ago agrees that it’s a little dramatic right now. We should give her time to develop mentally. Considering her feeding/swallowing age is around 12-18 months, we should give her till her developmental age to see if she can get control of it on her own. I read that lots of kids still drool up to 2-4 years of age.

Teeth and Eyes

Well, its been an exciting week around here. On Sunday night, while I was visiting our next door neighbor, Sadie lost her balance and fell out of a chair. (She was trying to sit with Shebli and Shelbi wasn't so happy about the idea =) Bill called me frantic and of course I came running home to find Sadie's right front tooth half way out. The left front tooth wasn't as bad. We called every dentist we knew and the pediatrician's office. As a result...the emergency situation was under control and we would see her regular dentist in the morning.

On Monday morning we saw the dentist. He told us to watch for discoloration in the next week to 10 days. We are on day 3 and they really look pretty good considering. I'm crossing my fingers they will stay white and be ok.

Today, we went to Sadie's annual eye appointment. It has been 3 years since she had her strabismus corrective surgery. The doctor said her eyes are very healthy and the surgery has held up well. (Sometimes it has to be redone). Her eyes will probably be dilated for the rest of the day. Those blue eyes react strongly to the drops.

Strawberry Picking

Today Sadie's class went strawberry picking! We decided to drive separately so Shelbi could come too. We got to the farm around 9:15. Both girls loved walking and running down the rows of strawberries. We all had a good time eating and picking. Shelbi was a much better eater, but she really enjoyed putting them in the basket too.

Sadie loved carrying the basket around. She did a really good job walking over the rows and picking too! We had a great time. Oh, daddy went too. Unfortunately, we didn't hang out with her class to much because their bus was an hour later getting to the farm. Both girls are napping now, so exhausting picking fruit!

Plastic Surgeon

This week we see a Plastic Surgeon. The geneticist has recommended we explore having Sadie's salivation glands tied because her drooling continues to be excessive. Many days she will wear approximately 4-5 shirts. She will no longer wear a bib and truly it's not age appropriate since she's 4 years old. The main concern used to be the socially acceptable factor, but there are questions about if she might be losing too much fluid to stay hydrated. Plus family and friends accept it about her, but I'm sure other people might find drooling a little gross. I understand that! It doesn't bother me, but I don't want her to lose fluids either. We go on Thursday...I'll keep ya'll posted!

Good Things

Ok, after venting...I'd like to add some good things Sadie can do...

• She now lifts her legs (while leaning on me) to put her foot in her pants leg.
• She can pull a pull-up up if it is up to her knees already.
• She willingly puts her hand up to push her arm threw a shirt sleeve.
• She is clapping to indicate yes.
• She randomly will Sign "more"
• She is eating better on her appetite stimulant...haha we should all be so lucky to need that
• She is more able to walk up stairs with a hand rail and even step up a curb unassisted.
• She's attempting to use silverware at meals.
• Her receptive language has really grown in the past 4 months.
• She will bring her cup if you ask for it.
• She will go get a book...sitting to listen to a story is a whole different thing haha
• She will climb the swing-set and go down the slide unassisted!!!

Shebli is saying new words everyday...

• She saw the mailman earlier today and she pointed to him and said, "mail"
• I said, "oh how nice" and she immediately started saying "nice"
• I told her Sadie didn't mean it, and she said, "mean"
• diaper
• knock knock
• door
• Sadie is now called ssssssss instead of tata for sister...so cute!
• cheeee is cheese

Parenthood is amazing!

Disclaimer Ha Ha

Just for anyone who is reading this, this blog is meant to inform the reader about what is going on in our life. AND how it affects me, Sadie, Shelbi, and Daddy....That includes me venting and also sharing good things too. Just wanted to say that! =)
Thanks for your interest in Sadie and life with a disabled child!
Lisa

High 5 for Shelbi

After a long stressful day...I'm thinking back on my last post and would like to give kudos to Shelbi for the sweets words she says...

Of course Mommy and Daddy
Daisy (dog)
TaTa = sister
Joyce (neighbor)
Nanny (grandmother)
Memaw (grandmother)
Jack
GaGa (Meghan)
NeeNee (Nicole)
bus
door
box
diaper
wawa (water)
up
down
on
off
spicy (so cute)
bless you
I love you
more
no
home
duck
mooo (cow)
baba (sheep)
buck buck (duck)
dog
ostrich (so cute)
help
ooooooohhhhh (open)
uh oh
bye bye
ruffffff (barking sound)
doll
damn-it (opps she copied me today)
please
giraffe
sit
juice
baby
ball
cup
booby
ouch
booboo (cut/bug bite)
bug
me
toothpaste
pee peee
poooo (poop)
green (signs it too)
blue
A (points to it too)
B (points to it too)
points to letter C
ABCs (just those 3 letters)

today she copied a bunch of words, but I'm drawing a blank

She also knows a minimum of 150 signs (me too) thanks to watching Signing Time with Alex and Leah.



I love you sweetie!

The Past Month

Ok, so I swore I would be more diligent about posting...and I really don't know what happened to the time.

In the past month, Sadie locked me out of the house. Apparently, occupational therapy is doing a great job...she was able to turn the dead bolt behind me when I walked on our front porch to wave to our neighbor. Lucky for me, my husband was only 5 minutes away and saved the day. Needless to say, we have a spare key now.

About two weeks after that Sadie was also able to lock me IN Shelbi's room. Long story short...Shelbi is in a big girl bed and we put a lock on the outside of her door to keep her inside. Yes, I know most people would say that my child knows to stay in bed until I come to them. Well, Shelbi's been in a queen bed since she was 15 months old due to her ability to climb and also the desire to not be caged in a crib. After a terrifying few minutes my neighbors heard me screaming out the window and came immediately...using the spare key to get me out. I immediately ran to our bathroom and Sadie is standing in our shower with Bill's razor in one hand and his toothbrush in the other...Conclusion...the lock is now higher up out of her reach.

Facts...the developmentally pediatrician continues to track her at 60 to 50% of her chronological age...12month old in language, feeding, mentally, etc. and 20-24 months in play/social skills. We all know she is so happy and social. Genetics pediatrician encourages us to do all we can for her, but understanding we need to have realistic expectations about her development. She says that concerning her curve of development and considering her age...we need to be realistic about how far we stress her/us out by pushing too hard. She encouraged us to find a balance between their appetite stimulant medication and allergy medication. They are both antihistamines. Orthopedic Surgeon believes at this time the tibia torsion surgery is not in her future and that Sadie's toeing-in is because of her very flexible hips. He discourages the "W" sit position. And so do we...."Fix your feet" is the catchy phrase we use to help her realize she's sitting that way as recommended by her private PT, who is awesome!!!

She is currently prescribed Prevacid 2 times a day (morning and bedtime), Claritin once a day at bedtime, and Periactin once a day at lunch to increase her appetite.

My only hope is that people continue to understand Sadie...so much is assumed because she looks so normal. She is a 4 year old with a 1 year old understanding...She is 100% dependent on her care...diapering, changing her clothes, predicting her wants and needs (she is non-verbal), drooling, high calorie food, her safety...she doesn't see danger. She is getting bigger and more things are becoming a danger to her. She can now reach things she never could before, locking doors, climbing. Nothing can be left unattended...she still puts things in her mouth...she is a stuffer. She would unroll the toilet paper...it is stored in the cabinet. She knocks over open drink containers. She sucks on the soles of shoes if they are left out. She doesn't understand hot and cold. She can reach the stove from the other side of the counter. She is now exhibiting stim type behavior...banging her head with her hand...like Dustin Hoffman did in "Rainman." She doesn't always see depth perception and often falls down the step in our house into the playroom. She can't be unattended outside...she puts sticks and wood mulch in her mouth. She literally choked on a piece of mulch last summer and we had to throw her upside down and do back blows. She has almost zero reflex skills for self protection. We start to lose our balance and we can catch ourselves, she will simply fall and hit her head....She doesn't eat well...remember those days when your child is 1 year old and you are encouraging him to eat the peas, but he just doesn't want too. You somehow think if you make that food and airplane that he'll eat it...Sadie is like that everyday every meal. Every meal, I mean every every meal...I pray she will get enough to at very least sustain her weight and hope she might gain a little

This list goes on and on...I don't write to be negative or vent...just to be truthful in the reality of a day with Sadie. Not that its important to me that people understand me or her or our family... I don't want sympathy...but maybe some empathy for life...Some gratitude about how lucky you are and our friends are to have a "normal experience" with their children. In many ways, I've become cynical about other people gossiping about the stupidest things. Or even complaining about the most trivial of life's issues. Or assuming and questioning why I don't go back to work...people let me tell you...I can't go back to work...Sadie is a full time enigma...school, therapy, doctors...scheduling...it goes on and on...I'm just sick of the smart ass comments about how nice it might be to stay home... I'm sick of the comments oh, I'd be so bored if I stayed home, or the smart ass comments "oh that must be nice" I just think that the old rule should apply...if you have nothing nice to say then say nothing at all...or what ever happened to the basic thinking before you speak. I just can't believe how many rude people there are...friends that actually say "oh, I'm so retarded." A friend of mine actually said, you know that's my word. Come on people, you can't be serious...have a heart...Sadie's medical diagnosis is mental retardation...politically correct or not...please get the picture. At anytime, someone could become brain injured...please don't take that for granted and be mean to people who can't help themselves.

Dental, GI, Developmental Pediatrician Appt.

hello all,
I just finished sweeping up coffee grinds off the kitchen floor...a white tile kitchen floor. Sadie pulled the coffee filter out of the trash...standing right next to me. Before I could get to her, she spilled it on the floor!

The week before last, both girls went to the dentist. We have been concerned about Sadie grinding her teeth. She tends to grind at night or when she isn't feeling good. After holding both girls so the dentist could get a good look, he confirmed that her molars are worn down. He mentioned a mouth piece, but I know she isn't ready for that. Shelbi's teeth look great. We finally get to use regular toothpaste!!!

This past week Sadie had 2 appointments with specialists. The first appointment was on Monday with her GI doctor. She has grown 1 inch and now weighs 32.5 pounds. The periactin is working to stimulate her appetite and the prevacid keeps her stomach and reflux calm. He advised us to continue the same medications and we follow up with him in September.

The second appointment this week was on Friday with her Developmental Pediatrician. He tracks her progress and tells us where she is developmentally. He confirmed that she is a dream patient...sweet, calm, easy to work with, and loving...The assistant preformed her evaluation and the doctor examined her. The doctor told us he was surprised to see little language and very little communication. She is developmentally between a 12-24month old. Language, feeding, and other oral motor milestones are 12 months, while play and interaction are 22-24 months. She maintains 50% of her chronological age...Maintaining that 50% since we have been seeing him for the past 2 years. Reality...she will probably continue to maintain that percentage, but on a positive note she will continue to grow mentally.

The doctor feels that she should be able to make choices with pictures, but after speaking to her teacher and also feeling my gut instinct...she truly isn't ready for that yet. Her only interest in pictures is putting them in her mouth. We will keep trying new things. The Assistive Tech devices should be here in a week or two...We ordered the "put 'em arounds." It is a sound device that is about 6inches by 8inches. The top half holds a picture and the bottom half is a button. When the button is pressed it can say a 10 second recording...ie. "I want milk." These devices attach to the wall and can give Sadie a voice and way to communicate. I really hope they work. We ordered them in November and it has taken this long to process all the paper work. Our insurance is covering it...$500 for 10devices...yikes!

She's drooling a lot these past few days...I always feel like she gets a cold or sinus infection when that happens. Both schools also told me she was quite fussy too.

Sadie continues to attend public school special ed preschool 3 times a week and private preschool 2 times a week. I feel like a taxi! I often wonder where do I draw the line...the money...time...energy...traveling all week to get her the best...the goal is to give her the best but at what expense?

Clarifying the reason for Angelman testing

They name the chromosome disorders based on the effected chromosome...ie.
> trisomy 21 (three copies of #21 is called Down Syndrome). We are part
> of several large organizations that compile data for families in our situation.
> Sadie as of right now is the only with her diagnosis. Therefore,
> there isn't a name for one person with one thing. Of the chromosomes
> there are numerous possibilities for error. Like the likely hood of
> the lottery numbers being drawn. Sadie has a diagnosis....del8p23.3
> with extra xp22.2....no one else has that same karotype. It was a
> complete shot in the dark that another chromosome was
> affected...angelman which is the 15th chromosome. She has most of the severe Angelman Syndrome characteristics. The geneticist felt
> like Sadie ought to have more cognitive and language based on the
> minor amount that her chromosome 8 is missing. But now we know that
> she is severely affected by this minor mutation in her chromosome 8.
> At this time she has had the most sophisticated genetics testing and the result is Sadie is Sadie.

Angelman Results

It's been a while since I posted. Honestly, I don't know where the days went?
Life has been busy. Our family, all excluding my husband, had the stomach bug...twice. Yes, the stomach bug can go through your house two times in two weeks. Shelbi and I shared a bucket for a few hours, while daddy took care of Sadie. The first round only lasted 6-8 hours. I do say only because the second round two weeks later lasted three days for Shelbi, 5 days and three stomach medications for Sadie, and one day for me with days of still being nauseous.
Sadie finally went back to school this week.
We skipped school and went to the zoo last Friday. It was 60' out...who would blame me? The girls had a great time. Sadie even mimicked some kids saying "ewhhhhh" when the elephant was pooping.
Although the beginning of the week was excruciatingly cold, today was a sunny 75 and tomorrow is supposed to be the same. We went out and played in the backyard as much as possible. Both girls love to be outside. I'm so glad...I think they got that from me...I love gardening.
Tomorrow we are going to the the Down Syndrome monthly meeting for parents and play group for the kids.
As for therapy, Sadie is having kinesio taping done to help with the external rotation of her legs. Basically, it's stretchy tape that winds around her leg like a candy cane to rotate her leg outward. We are really discouraging the W sit position too. We constantly say, "Fix your feet Sadie!"
Oh and on the medical front, the Angelman UBE3A test came back normal. So the deletion on the 8th chromosome is more profoundly affecting her than we originally thought it would.
Sadie recently showed some interest in sitting on the potty. She's interested in the potty...not telling me she needs to pee. There's a BIG difference. So this week, whenever she is dry for a while, I put her on the potty. Sometimes she goes and sometimes she doesn't. And she still goes even if she's standing without a diaper. We are no where near potty trained, but at least she isn't afraid of the pee coming out anymore.
She is so loving and happy. I only wish she could talk. She will be 4 next month and I can't believe it.

Yawning

So funny. A couple of nights ago, Bill was in the kitchen, tired after taking care of us all. We had the stomach flu. He let out one of those deep yawns. The kind that tells everyone in ear shot that you are exhausted. A few seconds went by and Sadie makes exactly the same yawning sound. I giggled a little and told Bill, I think Sadie just yawned like you. I asked her to yawn again...She did it 3 times. It was the cutest thing.

Life

School is going great and everyone is impressed with Sadie's ability to sit for longer periods of time. She has gone back to her old eating habits...barely eating. We took her off the periactin for a short break because of the sleepy/grumpy side effects. Sadie's geneticist said that was fine. Usually people are on it for 2-3 weeks and then off again for a week or two. I feel my stress level going up again though worrying about her weight. She gained about 1 1/2 pounds during the 3 weeks that she was on the medication. But being back in school has brought the stomach bug to our house. Shelbi and I caught it a few days later. Sadie and Shelbi's stomach bug wasn't as bad as mine, they are both on children's probiotics, so I think that helped them. Sadly, I'm pretty sure Sadie lost most of what she gained. She will start the periactin again this week.
Other than the stomach bug, everything is the same around here. Chasing Sadie around the house to keep her out of trouble and Shelbi is following suit and helping me. Taking and picking Sadie up from school hasn't been that challenging. Maybe I'm just getting used to it?! Daddy's been helping take on Tuesday and Thursday. Thanks Daddy!

Another morning at the hospital

This morning we took Sadie to have her blood drawn for the Angelman Syndrome UBE3A test, AGAIN! They screwed up the paperwork for the 1st test and therefore it had to be drawn again.


As expected, the lab tech blew the first vein and was unable to get enough blood out of her other arm. They had to call in the "Vat" team (i think i spelled that wrong, and i don't know what it stands for except they are supposed to be able to draw blood when the "regular tech" can't do it). Finally, after the 3rd attempt and endless poking with the needle, they were able to get 2 1/2 tubes.


Now for the 3-4 week wait AGAIN.

The UBE3A test is sequencing the genes on the 15th chromosome. It would be like getting number cards 1 to 1000 and you have to make sure each is in the proper numeric sequence. If 53 and 58 are switched that means they are out of sequence. If her genes are not sequenced correctly, she will have 2 documentable diagnosis. The gene sequence test will indicate if she has Angelman Syndrome.

25 Facts of Life

25 things I would like for people to know about me…

This is the recent topic on Facebook. People are writing poignant comments, thoughts, and feelings about their life that people might not know or they want them to know. I’ve read them from 3 people this week and have had it in the back of my mind to write one, but didn’t want to overwhelm my “friends” with complaints…or as I know them the “facts of life.” So here are my 25 facts of life…as I know it.

1. I change my 32 pound, nearly 4 years old daughter’s poopy diaper 2-3 times a day. In addition to the other wet diapers too.
2. I mentally tally Sadie’s calorie intake everyday.
3. I cry when I watch Signing Time, EVERY time…I wish Sadie would sign or talk.
4. I sold my SUV to buy a minivan so the doors open at the push of a button to make life easier. Sadie has to be carried most of the time to the car or she will take off.
5. Sadie has had 2 feet surgeries, 1 eye surgery, 5 gastro procedures/tests, 1 24 hour pH probe, 2 EEGs, a ton of EKGs/Ultrasounds on her heart, casts on both legs for 5 months of her life, 1 MRI, 1 CT scan, 1 Audiotory Brainstem Response (ABR) with Sedation, forcibly given blood for Genetics testing 3 times...4th time will be on Monday b/c someone at the hospital screwed up her test on the 3rd time...hmmm am I missing anything?
6. I have a handicap decal for Sadie.
7. I’m thankful for Meghan each day…I admit I can’t take care of Sadie alone.
8. I cry that Shelbi seems to understand her sister and I’m thankful for her.
9. Sometimes I go 2 days without showering and a week without shaving my legs.
10. I question everyday why GOD would do this to a child.
11. I never wonder “Why Me?”…”Why Sadie?” simply…"why?”
12. I hate it when people say, “God never gives you more than you can handle!”…have those people ever dealt with a tragedy in their life.
13. I hate it when people use the word “retard” in a derogatory way…my daughter is intellectually disabled or formerly known as mentally retarded.
14. I have used the word “retard.” I was ignorant.
15. I’m obsessed about reading other peoples stories. I will even contact strangers and they welcome the kinship we share.
16. I invent new ways to keep Sadie in her clothes…cutting the onsies up and sewing it on her pajamas.
17. My 46 month old loves to strip in her crib and eat her diaper.
18. Shelbi is potty trained at 17 months, sleeping in a queen size bed, saying words.
19. Sadie is nonverbal…that means she does not talk. Even if you hold her arm and say your name 12 times...she will not repeat it back.
20. I hate to attend birthday parties…it reminds me how delayed Sadie is and it makes me overwhelmingly sad.
21. I hate it when people are positive…I’m realistic…please don’t be offended…I’m the one who lives this life…you come in sporadically and I appreciate your positivity…but it saddens me to know you don’t understand.
22. Sadie has 9 doctor’s who see her at least 2 times a year.
23. Sadie is on the Mental Retardation Waiver wait list.
24. Sadie is on medication for anorexics…which is working…she gained over a pound this month.
25. It is a huge undertaking to dress Sadie…she goes through about 3-5 outfits a day. I am always doing laundry…and I hate it, but I love the smell.

26. I love her with all my heart and will do whatever I have to do, even if i secretly complain about it to myself.

I read this today on the CDO support group

> Mothers Lie> By Lori Borgman> > Expectant mothers waiting for a newborn's arrival say they don't care> what> sex the baby is. They just want to have ten fingers and ten toes.> > Mothers lie> > Every mother wants so much more.> > She wants a perfectly healthy baby with a round head, rosebud lips,> button> nose, beautiful eyes and satin skin.> > She wants a baby so gorgeous that people will pity the Gerber baby> for being> flat-out ugly.> > She wants a baby that will roll over, sit up and take those first> steps> right on schedule (according to the baby development chart on page 57,> column two).> > Every mother wants a baby that can see, hear, run, jump and fire> neurons by> the billions.> > She wants a kid that can smack the ball out of the park and do toe> points> that are the envy of the entire ballet class.> > Call it greed if you want, but a mother wants what a mother wants. > > Some mothers get babies with something more. > > Maybe you're one who got a baby with a condition you couldn't> pronounce, a> spine that didn't fuse, a missing chromosome or a palate that didn't> close. > > The doctor's words took your breath away. > > It was just like the time at recess in the fourth grade when you> didn't see> the kick ball coming, and it knocked the wind right out of you.> > Some of you left the hospital with a healthy bundle, then, months,> even> years later, took him in for a routine visit, or scheduled him for a> checkup, and crashed head first into a brick wall as you bore the> brunt of> devastating news.> > It didn't seem possible.> > > That didn't run in your family.> > Could this really be happening in your lifetime?> > There's no such thing as a perfect body.> > > Everybody will bear something at some time or another.> > Maybe the affliction will be apparent to curious eyes, or maybe it> will be> unseen, quietly treated with trips to the doctor, therapy or surgery.> > > Mothers of children with disabilities live the limitations with them.> > > Frankly, I don't know how you do it.> > Sometimes you mothers scare me.> > How you lift that kid in and out of the wheelchair twenty times a day.> > How you monitor tests, track medications, and serve as the gatekeeper> to a> hundred specialists yammering in your ear.> > I wonder how you endure the clichés and the platitudes, the well-> intentioned> souls explaining how God is at work when you've occasionally> questioned if> God is on strike.> > I even wonder how you endure schmaltzy columns like this one-saluting> you,> painting you as hero and saint, when you know you're ordinary.> > You snap, you bark, you bite.> > You didn't volunteer for this, you didn't jump up and down in the> motherhood> line yelling,> "Choose me, God. Choose me! I've got what it takes."> > You're a woman who doesn't have time to step back and put things in> perspective, so let me do it for you.> > From where I sit, you're way ahead of> the pack.> > You've developed the strength of the draft horse while holding onto> the> delicacy of a daffodil.> > You have a heart that melts like chocolate in a glove box in July,> counter-balanced against the stubbornness of an Ozark mule.> > You are the mother, advocate and protector of a child with a> disability.> > You're a neighbor, a friend, a woman I pass at church and my sister-> in-law.> > You're a wonder.> > > Lori Borgman is a syndicated columnist and author of All Stressed Up> and No Place To Go

Pity Party

I'll admit, I've been having a pity party lately, but I really feel myself coming out of it.

Things that are happening these days...In the line at McDonald's I turned around to smile and wave at Sadie. She held both arms up in the air and said, "Up." As clear as day...."Up." It was so awesome. I wished I could have gotten her out of her car seat.

Yesterday, Sadie's new bedding arrived, and today we got the new mattresses for the bunk bed. All we have to do now is build the doors so she'll be safe...that'll be no easy task. When will I find the time??? I can't wait to lay with her.

Shelbi is awesome and developing like crazy. She is mama's little helper and so understanding of what's going on with Sadie...already. She's been wearing panties for a few weeks now and had very few accidents. She's amazing.

Sadie started "private" preschool again. An awesome therapy group developed a preschool for children who need extra support. She is going Tuesday and Thursday. She will also start back in the public special ed classroom Monday, Wednesday, and Friday sometime in the next week.

Meghan has been awesome helping out with Sadie and truly has become a part of the family. We are grateful for the help. For the first time ever, I feel safe leaving Sadie, other than with Bill of course.

I'm really looking forward to the next couple of months and I know Sadie will enjoy school. I will also get some one on one time with Shelbi.

I love you Bill!

Life

I've been meaning to post this...I wrote it in pencil on Dec. 18.

We go in the bathroom for bath time, which we have done every night for 3 years 8 months and 11 days. I start the water just as I always do...Sadie tries to get in fully clothed.

After bath, both girls are dry and we walk the five steps to the "dressing/playroom" which is purposefully used just for that. I spend a few seconds grabbing a diaper, pants, and shirt for Sadie. All the while, Shelbi is putting a wooden puzzle piece in the puzzle. She's been doing puzzles with ease for 4 months.

I pick Sadie up to a stand. Her body is like a rag doll. She doesn't help. I tell her to put her foot in the diaper, then the other foot. I tell her the same way I have told her for 2 1/2 years. Next comes the shirt...put your arm in, put your other arm in...the pants are next. I dress her as if she is a 30 pound baby doll. She shows no attempt at lifting her leg or arms to help this time. I know it's a rare chance that she will even attempt to lift her leg or arm...I'm dressing her the same way I did 1 year ago, 3 years ago, and quite near the same as I dressed her the day she was born. At least this time she didn't fight getting dressed.

I walk out of the gated room to start a load of laundry, which is 5 steps away. This load of laundry, like all the other loads of laundry, is full of Sadie's soiled shirts from the constant drooling and messy eating, and the occasional spitting up. Full of dish towels to clean the food off the table and floor after each of our 3 meals today.

It took about 3 minutes to dress her after her bath and about 2 minutes to load the laundry. I come around the corner to find her naked again, in all her glory...the same in which she was born. The effort, the sore back from bending and dressing her...all gone with no understanding that she has to wear clothes. She is naked.

I decided to write because I feel know one understands Sadie or what it takes to care for her. I get a pencil and notebook that have been sitting on her dresser. The notebook is sitting there because I have weighed and documented her weight since she was a few weeks old. She was and sometimes still is considered "failure to thrive."

As I write my first words, Sadie sits naked at my feet pulling her diaper apart and stuffing the pieces in her mouth. I quickly stop writing and ask her to spit the diaper stuffing out. She pulls the wet piece from her mouth, I quickly grab it. If I'm not fast enough, she will put it back in her mouth. She stands and reaches up for me to hold her like a one year old child does. She will be 4 in April.

I take her under the arms and lift her thinking how much harder and heaver she's getting. I write now and the pencil is in my right hand, her naked butt is on my hip. I have to hold her left hand with my left hand because she keeps grabbing for my notebook and pencil. She doesn't understand that I want her to stop grabbing for it.

Shelbi continues to play 3 feet from me. She is stacking Legos and putting them in the box. She is 17 months old. And she put her underwear on, she is potty trained.

GOD

I was wondering about God today. Which was prompted by a friend thanking God for her answered prayer.

People pray and pray. Then their prayer is answered.

Why does God answer some prayers and not others?

Feeling sad today.

Sleeeeeping in the car today

January 5, 2009

Sadie had her 6 month appointment with the "rehabilitation physician." Another waste of time and insurance money. Some times I wonder how much they bleed the insurance companies...Sadie is a cash cow.

Sadie sees 9 doctors every 6 months...that's 18 specialist appointments a year...that's 540 dollars a year in copays...sometimes the doctor's cost $200-$1200 a visit...Add that up! Her AFO braces were $950...that's $475 a foot...who prices these things??? Okay enough of the soap box.

UBE3A test (Angelman's Syndrome sequencing test)

December 29, 2009

Sadie had to give blood again for the gene sequencing UBE3A test. This is the sequencing test to see if she has Angelman Syndrome (the other test was negative). My gut tells me that the test will be negative, but Bill thinks it will be positive.

My mom went with us to the lab. Of course, Sadie fought the entire time. The first nurse "blew" the vein in her left arm. Another nurse took over and was able to get 3 tubes of blood from the right arm. Sadie straddled my lap while Poppy and the nurse held her arm still. She screamed and cried the entire time...I cried.

Another exciting day in our family...I hate all of these appointments.

Two days later, I open a letter from our insurance company stating the test will be covered (already preauthorized by the doctor) for 1/1/2009 to 2/1/2009. My stomach lurched...the test is 1800 dollars and we have a 20% coinsurance payment. Today, I spoke with the genetic counselor and she assured me that it's okay and it will still be approved. We already met the $2000 yearly (2008) out of pocket for Sadie, so we wanted to get the test in before the end of the year.

This week we are trying to figure out Sadie's school situation, now that we had to pull her from private inclusion...the teachers didn't know what to do with her...she wanders the classroom while the other children are function and age appropriate.

She's also been sick with a sinus infection...me too. We are both on antibotics.