Thursday, January 26, 2012

Gilbert's birthday.

Tuesday was Gilbert's 58th birthday.He was 40 years old when we had Ariel.We had decided that we would just do a nice little party at home,due to the fact that our washer had broken and our laundry was in a mountainous pile.So he sacrificially gave up the money for his birthday dinner and bought me a gently used washer and dryer on Craig's list.It is so nice not spending two hours trying to get the washer to go through one load.I love it!

That's one of the things I love so much about my hubby he is very sacrificial like that.Anyway he said he would be happy if I just made him some mexican food.

So Ariel and I went to work in the kitchen to make her daddy the best meal ever.We made homemade taco and tostado shells,Homemade refried beans and spanish rice.We had all the trimmings like lettuce,tomato,cheese,sour cream,guacamole the works.My cousin made a delicious tropical punch and also brought salsa.

This was the plate Ariel and I made up for her daddy.She has been such a huge help in the kitchen lately.

                                   Lining up for the food.

We had so much fun with our cousins playing game and enjoying wonderful food and fellowship.Gilbert was all choked up.(Actually I think he was having allergy problems.)

Happy Birthday to my hubby and best friend!

Monday, January 23, 2012

Welcome to Holland.

I did not write this,but it's so very true to so many of us with children with disabilities.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Thursday, January 19, 2012

Snow days!

We have been getting our share of snow.I had thought we would have dodged the bullet this year,but nope.The people in Eastern Washington are quite used to this kind of weather,but not us on the western side.

I don't mind it if I have no where to go,but it looks like we will be missing Ariel's G.I. appointment that we've waited months for.Our snow started falling on Sunday when I had to take Ariel to the E.R. and we've had little bits since then,with the biggest event hitting on Tuesday night.We have almost a foot of snow.It is very pretty though and thankfully we've kept power and water the whole time.

The Shihtzu's were having a lot of fun playing in it.They are so short they had to hop around like bunnies.They were looking for their ball in these pics.

The kids had fun playing in it.Daniel with his little snow man.

Ariel was having fun sledding and Michael was building sculptures.

Now we are getting freezing rain making for a slushy mess.
Although very pretty I will be happy to see it go.

Tuesday, January 17, 2012

Being out of my element,kidney issues and more.Part 2

Well I'm adding a part 2 to this saga,for the simple fact that it never seems to end.I have Ariel doing all the new meds,which with her current ones seems to be a pharmacy full.Trying to push the fluids and all that.

But we still continue to have many bumps in the road.Thursday night she looked awful throwing up and having seizures and even some new weird head seizure thing.The whole week she had been having a lot of wretching.But it was Thursday that she was actually vomiting again.I'm so frustrated with doctors and E.R.'s it's just obnoxious.

I don't understand why they don't get that Ariel is not a typical patient.Anything weird and wacky that can go on usually does with her.Thankfully we will see the Nephrologist and Epileptologist on Tuesday.Hopefully we can all put our heads together and come up with a plan.I hate to pull her Topamax,because it's one of the few meds that works for her,but I also don't want it destroying her kidneys either.It's such a no win situation.Poor Ariel she's so tired of being sick.It's just been awful.

She is tired of going to the E.R. or having to stay home in bed all day because she feels terrible.Please pray for her and pray for wisdom for this situation.

Well friends,things have been so crazy the past couple of weeks.
Ariel has been having so many tummy issues the last couple of years,mainly problems with Irritable Bowel.I have taken her in so many times only to be dismissed or to be told she had things like an ovarian cyst.

When this pain started up I kept thinking it was much the same.Although I do remember a few times of her pointing to pain towards the back.That evening we had all went out to Dairy Queen and were going to go to the movies.We ended up leaving the movie as it was starting,because of people bringing little children and babies and texting all over the place.

That night as she slept she was woken up by pain and started vomiting a lot.Everything I normally do for her I.B.S. wasn't working.So I ended up taking her in.When we got there thankfully she got a wonderful doctor that was very kind.He thought she may have kidney stones,due to the flank pain and the fact that there was blood in her urine.He had her do a CT scan that showed 2 kidney stones and he decided to admit her.

Once there she got I.V. fluids round the clock and an Ultrasound showing two stones one 5mm.We were sent home the next day with pain meds.We were home for about an hour when she realized there was no way she could take being home.We managed to control her pain that night and then ended up going back.She got admitted and once in a room I left to get my things, this lady doctor waited for me to go to my car and then interrogated Ariel on things like doesn't she feel lonely being homeschooled? and does she like her family? And things like that.When I returned Ariel was very upset and so was I.She told me that the gal was even making out like she was faking her pain.I had a good conversation with the nurse and wanted to just be discharged,but knew she was in too much pain to do that.Thankfully the next morning this gals shift was over and she left for the week.The next doctor was wonderful.

Ariel had to have Tordol around the clock for pain.The plan then became to flush the stones out and if that didn't work surgery on Tuesday.So she had numerous bags of I.V.fluids run through her,which was quite annoying at times.

We are thankful for the many friends that sent Ariel cards and for our pastor and his family that came to visit.We also colored pictures,made paper chains and decorated.Ariel's room was wall to wall cards and all the doctors and nurses said it was the cheeriest room on the floor.

By Tuesday we realized they had not flushed out.So she was prepped for surgery.The child life specialist came up and discussed the surgery and what would be done.Ariel told her she was a bit afraid of the mask,but more afraid of getting another I.V. because hers had blown.The last I.V. took them 6 tries to do.So she talked to her that gasing her and putting her under would be better.I had discussed with her about her mental impairment and she said she had called down to the O.R. to discuss it to make sure everyone was on the same plan.

When we got there it was not good The Anesthesiologist started interrogating her and asking her questions she did not understand and then started giving me dirty looks everytime I answered something for her.She insisted on a pregnancy test,though she had,had an un-necessary one two days prior.Then when she told her she wanted to be put out for the I.V. she told her that wasn't necessary because that was for little kids.Well as you can imagine I was in full mama bear mode at this point.

I kept thinking "How dare she talk to my scared child like that."
I talked with the nurse who had me go up to the waiting room after kissing Ariel good by.The head of Anesthesia came up and we had a good discussion.He said her behavior was totally innapropriate and he would deal with it.

He must have because Ariel said when they got to the Operating room this gal was so sweet and nice asking her about her dogs and being really kind,which is the way she should have been in the first place.They did a procedure called Uretoscopy where they take this device with a basket and go up and grab the stones.
When she came out she was looking pretty sore.

The Urologist met with us and said she had 5 kidney stones making a divet in the Ureter and they were all piled up.He said she had more in the kidney,but they were smaller and hopefully would pass.

By the next day she was itching to leave,but she started having spasms and was in a lot of pain.So they gave her more pain meds and something for spasms.They were in no hurry to kick her out.By evening she was better.They had given us about 6 prescriptions jugs for collecting urine and a whole lot of instructions.Anything kidney makes me definately out of my element and so I am having to gain more medical knowledge as this area is so far out from anything I know.

So we packed our numerous bags and left.

We've had some ups and downs since we've been home.
She's had off and on pain and we even ended up back in the E.R. on Sunday.With her having some of the same pain.

So we are now waiting for upcoming appointments with Urology and Nephrology.As of now she is having to drink lots of fluids and be on a low salt diet and lots of new meds,to counteract the Topamax.

Thank you for all your prayers and love and support!

Thursday, January 12, 2012

Walking in my tattered worn out shoes.

These are the shoes of any mom or all mom's (dad's too) of disabled children.They are tattered and worn from overuse.Very much like mom herself from the constant care she must give to her child that cannot fend for themselves.

They are not sleek and stylish, they are worn from the many miles walking across the floor either tending care or walking with worry.These are my shoes and the shoes of many others like me.

As a parent of kids with special needs it's like being drafted into a club you never wanted to be in.We all have a special bond with one another,knowing the sacrifices we've all made and some of the dreams we have all given up.

Sometimes I get sad when I get those Christmas letters of how peoples kids are growing up,getting jobs or married and moving on with life.I don't begrudge that to anyone I'm very happy for you,but I will admit it does kind of sting at times not knowing the future that my children will have.

Please don't judge me by the shoes I wear.They are shoes that have been in many battles with unkind people in the medical field and unkind people in general who do not understand the way my childs brain works or do not have or take the time to understand them. They have seen many tears both from me and my child.

After many years though these shoes have become familiar.I will never say they are comfortable,but they are reliable.I will instantly recognize others by the shoes they wear and instantly form a special bond with them when I see their ratty worn out shoes,but I am always thrilled as well when someone will come up to me remove their sleek and stylish shoes and say let me try on your shoes for a while and see what the world is like in them.

Until you see what the world is like in my tattered,worn out shoes,please don't judge me for them.

Friday, January 6, 2012

Caterpillar in the tree how you wonder who you will be?

I love this song by Miley Cyrus.It has been the symbol for many of us with disabled children.Waiting for our little caterpillars to come out of  their cocoons and emerge into that beautiful butterfly God wants them to be.

Those cocoons are in the form of varying disabilities.They can be anything from seizures,Cancer,Down Syndrome,inability to walk or talk or think normally,really anything that makes your child stand out from the crowd and labeled as special needs.

Ariel used to be such the picture of health.Then around the age of 9 her medical problems started.This is her life story video for anyone that hasn't seen it and it will show you why this song has special meaning for us.

The past several days have been more of a tangle in the perpetual cocoon that we call disabilities.

Ariel came to me Tuesday night crying in pain, doubled over and vomiting.I could tell this was not her normal Irritable Bowel Pain.I drove her to the E.R.After getting there and the doctor seeing where her pain was and her urine testing positive for blood he ordered a CT scan.

After the CT scan I was told she had a kidney stone and then later I was told she had two.She was in severe pain.

Then there were hours and hours of fluids and I.V.'s pushed through her to flush her system.

They seemed to control her pain with Tordol.She was antsy and anxious to go home.I wanted to go as well,but was afraid of how she would tolerate the pain.She was looking good and feeling good at the hospital.

They only gave her one dose of pain meds by mouth and then sent her home,mainly because she wanted to go.But my fears are coming to realization,being in the hospital is far different than being at home.She's in a tremendous amount of pain again and I'm going to have to call the hospital again and see if she will need to be admitted back.

We will see how the night goes,whether she can maintain at home or have to go back in.I'm so tired of seeing my little caterpillar struggle all her life.I get so tired of seeing so much of her life spent dealing with pain and discomfort.I want to see her break free of this cocoon and be able to spread her wings.