Tuesday, November 6, 2012

Spicing up life

Thanks Sadie... I just said this morning that I needed to put a lock on that cabinet!

Times change

And with the changing times... The time changed and everyone's internal clock is an hour off.
We've been up at 5 am each morning, but got a little break this morning and Sadie woke us at 5:45am. I guess that's not to bad. So, cheers to making bacon way to early.

Saturday, November 3, 2012

sick

I'm not sure what's worse... knowing your child is getting sick by the first signs and symptoms or fearing how bad it will be.  Either way, watching, anticipating, wondering how she feels, it's a sickening feeling seeing her stop eating and sleeping 3 hours in the afternoon when she never takes a nap.  Or hearing the first sounds of a gag, that you know are about to turn into throw up and wonder how close I am to a bucket, the sink, or hard floor that will be easy to clean up.  Because I've cleaned up throw up more times than I can count and don't event find myself repulsed by it anymore.  Or worse feeling relief that your other child who is now 5 years old, can at least sit and take in the experience with some understanding, and even lends a helping hand by brushing her sister's hair out of her face.  
Hoping for a restful night tonight and that this little bug gets out of our house quickly.

 

Wednesday, October 17, 2012

Sunday, September 16, 2012

Tuesday, August 28, 2012

missing


I’ve gained a lot from Sadie.  I have. I’ve grown to know unconditional love, understanding, being grateful for so much more than other mothers, and for giving myself completely to the care of another person.  I am so much more aware of life’s rewards and hardships.  I want this post to be about the things I miss.

I miss leaving the toilet tissue on the holder in the bathroom... she eats it and unrolls it.  I miss leaving the soap on the sink to wash my hands… she dumps it out on the floor.  I miss family photos and lamps on side tables… she breaks them.  I miss knobs on the oven… she doesn’t understand danger.  I miss unlocked cabinets.  I miss clean furniture and windows… she constantly spills food, snacks, drinks, and pees anywhere.  I miss taking a shower alone and a long one… she isn’t safe out of sight.  I miss looking at magazines and reading books… I’m tired and she tears the pages out.  I miss friends who used to think I was easy going and happy…. I’m tired and sad.  I miss sitting for more than 60 seconds… I have to be quick and on guard at any time to help her.  I miss dinner without flying food.  I miss staying up to watch a movie… I’m too tired.  I miss leaving the dog’s food and water out peacefully… she will eat the food and spill the bowl of water.  I miss going to breakfast with friends… I have to hold her firmly in my lap in a restaurant and she grabs everyone’s plate.  I miss not having a gate before the front door… she will escape and run away.  I miss books on bookshelves… they are thrown or torn.  I miss having an open refrigerator... it’s locked because she will take food out and spill it.   I miss feeling like a regular person who doesn’t worry about the things parents of special needs kids worry about.  I miss my old friends.  I miss my new friends.  I miss my family who I once identified with.   This life is different and I miss a lot.  It’s rewarding on a whole different level, but today, right now, in this moment I’m going to give myself permission to miss the Me I was before.

Friday, July 13, 2012

Brain

Apparently the man gymnastics teacher at Shelbi's gymnastics class, asked 2 kids last night if they had a brain in their head because they werent folllowing directions. So shelbi just asked if Sadie has a brain in her head since She doesn't understand and do what she's told.
Heartbreak.



Sent from my iPhone

Monday, July 9, 2012

tonsils

This has been the hardest week of my life.
Sadie had recurrent strep, totaling 5 times between January and May. The ENT examined her a few weeks ago, and it was determined, if she had her tonsils removed that she would get strep significantly less.
Not only did strep consume Sadie, her sister got it several times, and so did I, our whole house shut down with sore throats, achey bodies, headaches, lack of eating and drinking. and over all feeling miserable for 3-5 days each time we each got it. Strep equaled dozens of missed days of Kindergarten, preschool, and overall diminished quality of life. In fact, I was hospitalized for strep meningitis and viral meningitis for 4 nights.
And so it was scheduled and on Tuesday, Sadie had both tonsils removed, with very little loss of blood, the doctor didn't even need to use sutures. I assumed a few days of eating less and drinking less. What I didn't anticipate was 8 hours of wheeling her around the 8th floor of the hospital in a wagon with the IV cart rolling with us. She completely refused to sit still, refused to lay in her bed, and refused to play in one spot. The only way she was comfortable was laying in the wagon, surrounded by pillows and constantly moving.
We finally insisted the best place for her would be at home and we promised to keep her hydrated with a syringe (65cc's) and fluids. We've been in this situation before when she was sick with a flu or cold. I've had to hydrate her with a syringe and electrolyte fluids to avoid going to the ER. I assumed this would be no different.
After being home for a day, the syringe became a form of torture for both of us. Holding her down and forcing her to drink it just got worse and worse as the days went by. We were forcing everything, including medication and drinks.
By Friday morning, 3 days after surgery, we started thinking about going back to the hospital and get an IV in her. I was completely consumed with getting enough in her to keep her hydrated. By then, her urine output was pushing 15 hours, and by Saturday, she had gone almost 24 hours without going potty. Memaw was awesome with her, getting her to eat some ice. At that point, every time I approached her with a medicine cup or syringe, she would run hysterically the other direction
Saturday morning I gave her her appetite stimulant and she finally started eating more ice, snow-cone ice, sipping a few drinks from a juice box, and even eating a few bites of cheese and letting animal crackers melt in her mouth.
Relief came Sunday morning when she woke and chugged 2 whole cups of ice water and just kept eating soft foods all day. I am so so grateful for the appetite stimulant. I think we might have found ourselves in the hospital again if it hadn't been for that medication.
We are now at day 6 since surgery and she is drinking much better, but still needing pain medication. She hasn't resumed her milkshake diet yet and her her little body that used to look healthy, now looks thin and her legs and arms look boney. Her face looks thin and tired.
I know we are out of the woods now, but it was one of the most stressfull weeks. Knowing how critical it is for her to drink and eat, and not being able to make her understand that she had to drink. To help her understand that I wasn't hurting her by giving her gatorade in a syringe, that it was for her own health.
Hoping for a healthier year without those tonsils!!!!
****The last photo was when she was 15 months and the ER couldn't get an IV in any of her veins. After trying every hand, arm, foot, and leg, maybe 20 IV tries, they finally put her IV in her forehead. Another stressful memory :(

Tuesday, June 19, 2012

Waiting for OT

All ready for eating and chewing therapy with the Occupational Therapist.

Thursday, June 7, 2012

Green drinks and Sadie

It's a good thing Sadie does not care that her milkshake is green. I added a little extra spirulina on accident and her drink is GREEN! Yummmo and healthy!

Tuesday, June 5, 2012

Bye Bye

Omg-
Sadie said bye bye to a church lady as she was trying to get in her office. I said, say bye bye- she said it.
Tears of joy over such a big accomplishment. :-) way to go Sadie. I love you so much.


"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

Sent from my iPhone

Monday, June 4, 2012

Rest of the last post

The last post was chopped off. So here ya go-

Here we go.... our adventure to the grocery store.  These are pretty rare since I find it pretty exhausting to push her in her stroller and push the grocery cart at the same time.  I always get a number to stares from other moms and children or the person who kindly asks if they can help.
Over all, it was an uneventful trip, we rushed home to put the groceries away. Off to OT, and they to pick Shelbi up all by noon. 
Home again to make 2 different lunches.  Separate of course, since Sadie is learning to chew and Shelbi has been holding pizza without help since she was one year old. Shelbi eats a peanut butter sandwich, grapes, and cheese.  Sadie eats mashed mac and cheese with crumbled goldfish on top to encourage her to chew since it adds a crunchy texture to the mushy noodles.  We even put the princess tent over Sadie's little table to give her that covered comfortable feeling to see if she'll sit down.  I asked Shelbi to try to feed Sadie a few bites.  Success, and Sadie becomes a little interested.  After eating about half Sadie pushes the airplane bites away and she is finished.  
I completely feel like a full day has passed all between the hours of 8amand 1pm

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

Sent from my iPhone

our monday

The day started off dropping Shelbi off at summer morning camp. Only 3 hours to get to the grocery store and Occupational Therapy for chewing therapy and back to pick Shelbi up at noon.

Wednesday, May 30, 2012

Yogurt

Caught with a tub of yogurt when I wasn't looking for 60 seconds. Ha

Friday, May 18, 2012

when I'm 7

In our normal routine, the girls played on the swing set last evening before dinner. Because of muddy feet and knees, the girls took a bath together. 
These days, I've encouraged Shelbi to bathe alone so that both girls can have some privacy separate from each other.  Tonight was different simply because they both had muddy feet. 
After their bath, I was getting Sadie dressed and I didn't realize it, but Shelbi was watching me.  She was already quickly dressed.  Sadie must have been making her normal vocalizations.  Shelbi asked, "Mommy, when I'm 7, will I be like Sadie."
Taken back, I said, "Baby girl, what do you mean, will I be like Sadie?"  She said, "Will I start saying, 'babababa?"
I hugged her after that and tried to reassure her that she didn't have a disability, and that she would be able to talk when she turns 7. 
Trying to explain that to a four year old is tough, but feeling it as I'm explaining it, reminds me that Shelbi is every bit, living this life, as I am.

Saturday, April 21, 2012

Spring days

Sadie laying calmly in the grass after a softer fall than it looked.

Wednesday, April 18, 2012

communication

The older Sadie gets, the more communication gets to be a larger issue.  People look to me to be her voice... her voice for all aspects of her total care.  "Should I feed her, should I change her wet clothes, should I change her pull up, should I get her a snack, a drink, a toy, a game, shoes, socks, coat, sunscreen, should I stand by her side, assist her, hold her hand, give her space, hold her, sit with her, create an activity for her?" those are among the few questions I get on a daily, minute by minute, hour to hour basis when someone is caring for her who isn't capable of intuitively understanding the needs of a person, but more especially the needs of a person that can not speak traditionally with their voice.  This is probably the most challenging hurdle I've had to cross with her care givers.  Getting them to see her as a 7 year old and treating her as a person with choices, feelings, both physical and emotion, with needs just like any other child to balance her disability with giving her space has been tough.  I hate that people see her with out the ability to actually have choices and be able to have her wants and have those respected.  She is a person, a human being, a child.... presume competence people.

Sunday, March 11, 2012

Sunday, February 19, 2012

The Problem with "Problem"

I was recently at a birthday party and the dad of the typical developing child, referred to Sadie as having a lot of "problems" and that she need extra support. We were discussing childcare so that we can keep it in context. But, I have to admit, I don't think I have ever considered Sadie or her "issues" actual PROBLEMS.  For my life, with Sadie is what it is.  Sadie is a child, a person, she learns, thinks, moves, discovers, communicates, she loves, she hugs, she has pain, and does a lot that other children have outgrown, but I admit, I have never seen it as a "problem."  
I felt a great need to read some articles on the Disability is Natural website by Kathie Snow.  I needed to read her thoughts... this article was right on... "The Problem with "Problem"
The Problem, with Problem, is that I see the word "Problem" as something I can FIX because something is broken.  I don't see Sadie as broken, she is a whole a person/child as any other.  
http://www.disabilityisnatural.com/images/PDF/problem.pdf 

Thursday, February 16, 2012

IEP meeting today

Today was another IEP meeting to discuss changing Sadie's label prior to her 7th birthday.  In the summer of 2007, Sadie was found eligible for special education services and was labeled developmentally delayed.  In our school district, children must have a label change by their 7th birthday to Intellectual Disability, Other Health Impaired, Developmental Disability, etc.  All of that requires some or all of the following,  updated social history, psychological evaluation (IQ), adaptive/behavior, etc.  We strongly feel at this point, we are not ready to "label" her ID, because we have many concerns with the implications of her IQ being in her record.  Let me ask you a question, would you want your child's teacher or other teachers to know their IQ? Do you think it would affect how they are treated or educated? Do you want anyone to know your IQ?  Would you post it on facebook?

Tuesday, February 7, 2012

Reminds me when she first got baby teeth

Heehee... Sadie has 3 adult front teeth and 2 adult molars and 8 baby molars left in her mouth. As strange as her teeth look now, I think they are beautiful and so much better than all the super crowded 8 teeth that were there.
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!


"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

Sent from my iPhone

Monday, February 6, 2012

Photos to go with the last post

Under Anesthesia

Sadie had 8 baby teeth removed this morning under general anesthesia. In addition, the two 6 year molars that came in defective due to hypoplasia (missing enamel) were saved and could be filled rather than crowned. Initially only 4 baby teeth were supposed to be pulled , but her mouth was just too crowded. We are so happy with the care and attention from her dentist and also the children's hospital team has been great.
While she was under, she also had a heart echo and blood drawn for a CBC, thyroid autoimmunity baseline, and food sensitivity.
We will be able to see her soon, after the heart echo is finished and she's taken to recovery.
Hoping for a restful afternoon and comfort for her little gums that are stitched up.


Sent from my iPhone

Sunday, January 29, 2012

Broccoli

Raw Broccoli:Sadie's item of the day to carry around.

Rheumatology appointment

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.

Thursday, January 19, 2012

New shirt and soooo cute

Sadie's all ready for school this morning in her cute new shirt!