Search This Blog

Thursday, August 23, 2007

the 21st Disability Blog Carnival is UP!

Move Over Letterman, there's a new David in town.
David has posted the latest Disability Blog Carnival comprised of many top 10 lists. It's a great idea for a carnival and David has done a GREAT job of organizing it.

I have to go now - lots of thought provoking, funny, deep top 10 lists to read. Enjoy!

Wednesday, August 22, 2007

Happiness of Disabled Kids V. Peers

In light of my last rant if you are wondering if a disabled kid can be as happy as a non disabled one check out this UK study here. Thanks to David for posting about this here. Turns out that all that energy spent pitying the disabled would be much better spent on ensuring equal rights for them instead. Go figure.

Also, Jacqui, one of my all time favorite bloggers, has conducted and written an excellent interview with a very successful woman who has cp and is nonverbal. You can read it here. Thanks to Jacqui for this great interview and introducing me to Glenda Watson Hyatt, blogger and auther of the book, I'll Do It Myself!

Tuesday, August 21, 2007

Working Life Time and August Adventures

Sometimes, probably more than I would like to hear, people say of me and to me, "You have a hard life." I have to admit that part of me hates that - the part that hates anything with the hint of pity. And part of me agrees - life is hard and sometimes mine is too. However, overall, I really truly don't think it's a good thing to judge someone else's life time. For us, we have a lot of things we do that are different than the norm. Ok, what of it?

I contemplate on a regular basis. I would describe these contemplations as little 15 to 30 minute conversations with God about my life and life in general. In one of my most recent contemplations I heard the message quite clearly, "Don't begrudge others of their 'rest life times'."

This was a good reminder for me on a day when I was feeling overwhelmed and a bit resentful of why things seemed so hard for me but easy for others - it all seemed unfair. What this meant to me, is that some times you reincarnate and have a life where you learn ALLOT very quickly. Like a really jam packed, comedy and tradgedy, on the edge of your seat thriller movie. I would call these working life times.

And other life times it's more restful. Things unfold more slowly. There is not as much hardship and things are relatively pleasant and easy. I have had those lifetimes. And I think this life of mine is not one of them. It was quite difficult before Ellie was born. I am seeing a common thread when I look at it on the whole. So be it. It's a gift from God - all of these experiences.

But when you look at my life and say, "wow that's so hard", just remember you have had many working life times (if you believe in reincarnation - if you don't no worries) and will have more. So I won't begrudge you your resting lifetime - but don't begrudge me my working life time. I am learning a great deal and there is about a million tons of love thrown in there to keep me going. So, I'm good and no less successful or important or viable or credible or competent or deserving than you. Thanks.

Ok - so that's my little rant.

Here are pictures of Ellie's first time in the Creepster Crawler. She did AMAZING. She didn't cry. She didn't ask to come out. She played with her toy phone and explored a strip of abc mat. Thanks to Jessica and Diana for helping me learn how to get her in it and use it.

The other pictures are just potraits of my 4 and a half year old darling.

And the very last picture if of me and my oldest and dearest friends. We all went to college together so our friendships are going on 20 plus years. I am so lucky to be back on the East Coast so I can hang with them. This was at our July birthday celebration - yesterday. I would never say we do things by the book.

Friday, August 17, 2007

First Time in Kiddie Pool

We have already put our booster seat to good use. This was Ellie's first time in the kiddie pool. She loved it though did not stay in it for long because it was a little chilly. Then she wanted to sit on my lap and push the boat in the pool as well as sing the 5 little ducklings song with the help of mama and baby duck. I had spread out a towel by the pool as well and she indicated that she wanted to lay down on that so we did and she was just delighted to be outside on this great summer day. I showed her the sky and the clouds for the first time teaching her those signs.

Thursday, August 16, 2007

Top 10 Most Unexpected Blessings From Holland

This is my post for David's Disability Blog Carnival with a Letterman style top 10 list coming to his blog on August 23rd. (Great idea for a carnival David!)

Here we go:

The Top 10 Most Unexpected Blessings From Going to Holland Instead of Italy:

#10. I got to read a lot of poetry dissing the Dutch.

#9. I have something to blog about.

#8. I now know who my true friends are.

#7. Because of the g-tube I can completely control her nutritional and caloric intake.

#6. I haven’t had to childproof the house.

#5. She won’t run away from me in a crowded public place.

#4. I have met the most amazing people from therapists to nurses to parents of other preemies and children with disabilities – I never would have met otherwise.

#3. I see disability now and instead of fearing it and I continue to expand my understanding of it so that I can advocate for my daughter and in doing so strive to make the world a better place.

#2. My marriage, having been tested to the most intense heartbreaking limits, has remained strong and wonderful. I have discovered that Dave and I are the most amazing team and are not afraid to face anything together – that’s nice to know heading into auld age which is probably scarier than everything thus far!

Drum roll please....

The number one Most Unexpected Blessing from Going to Holland Instead of Italy is:

#1. Holland is way less crowded and the lines are shorter.

Just kidding.

The best thing out of all of this is:

#1. I have the most wonderful, loving, spiritual, emotional, strong bond with my child. I appreciate every, and I mean every little thing she does, every single moment of her life, more than I am certain I would have, had I gone down the typical road - to Italy.

– Every little thing she does is magic and I have the eyes to see it.

First Years Reclining Booster - I think she likes it!

After Ellie's Physiatrist put the kabosh on using the bumbo seat we have been sticking mainly to the kid kart but that means Ellie can't be close to the floor and access her toys easily. But recently I purchased this little beauty at Target for $25. Worth every penny!

Thanks so much to Billie for this suggestion. Ellie loves her new seat and it allows her to go in things like kiddy pools and sit closer, on her own on the sand at the beach. Infinitely more important - it will allow her to sit at the table with everyone else - especially when we visit the relatives versus being in her kid kart away from the table. It's oh so portable too.

Wednesday, August 15, 2007

Our life in pictures

I am going to post at least one new picture of Ellie every day. If Dooce can post a new pic of her dog every day, I think I can manage a new one of my beautiful Ellie Belly. No one would mind, right?!

This is a post to catch you all up on our summer which, obviously has not been all bad as we have managed to get some fun outings in there. More pictures tomorrow of Dave working on the French Drain. Do we know how to have fun, or what?!

Thanks to everyone too for their kind thoughts. Seems like the angels have listened to you all and my headache is gone after 2 plus weeks. It's nice to be back.

Picture Descriptions from top left to right descending:
1. Ellie reading about her hiccups which she had a bad case of the day she came home from the hospital. She was delighted to read about it - ah the power of naming.
2. Ellie sleeping the day we returned from the hospital
3. Ellie discussing the fish with Dada at Mystic Marine Life Aquarium a week or so before the seizure
4. My two cuties posing at the aquarium. I am a lucky woman.
5. Dave and Ellie at Watch Hill this same weekend.
6. Ellie reading with her Nana Jan. She is way into Grandmas these days.
7. My beautiful girl

Sunday, August 12, 2007

Alive and Well and Really Tired

Hi Everyone. This is just a quick post to let you know that Ellie is fairing very well after her big scary seizure. They think at the end of the day it was triggered by the ear infection and that she had viral meningitis.

She seems to be recovered from all of that and the spasticity in her ankles is GREATLY reduced. What is up with that? Ok for silver linings.

But the more important outcome is that she is herself, her bright, loving, funny, smart little girl self. We didn't lose any of her that I can tell - thank all the powers that be. She is extra tired from the increased seizure dose. We get her levels checked tomorrow so we will see where she is. We are aiming for the 90's which if you had told me that a year ago I would have been really upset. In the past the initial medication increase fatigue lasted about 2 weeks. We are coming to the end of that two weeks so hopefully she will start getting her energy back. It's hard to see her with dark circles under her eyes and having trouble staying asleep at the same time.

I, on the other hand, and Dave, are really tired. I think I have viral meningitis too due to the constant headache I have in the back of my head going on two weeks or more now. We are not sleeping well because every little movement we run in to her. I really should take up donations for a king size bed. It's the only way any of us will ever sleep well again.

Ellie is so quirky too. She might be scared as we are for all I know. She wants us to come in to her if she wakes at night. Which we do, if we are not hovering there already because we heard her catch her breath. Then she wants a snuggle. Then if she is hungry we feed her and diaper her if that is the need. Then, when all is said and done, including reading ALL the language on the baby wipes box (Kirkland from Costco) several times she wants to go to sleep - NOW. She says, "Ahhh!" and pushes me away and curls onto her left side, forehead buried in the pillow and goes to sleep. It's a somewhat abrupt dismissal at times. But ah well, maybe she is just preparing me for her teen years when she won't want me in her room at all.

On top of all of this we are having to make some critical repairs on our ramshackle house regardless of headaches and braced up knees I have been digging some ditches. Nothing so humbling as digging a ditch.

In between all this chaos we have managed to take Ellie to the beach once as well as the farm to pet the animals. At the beach she loved the pop up tent we got her as did every little toddler in the immediate vincinty so we were blessed to have a lot of little curious visitors that day. She took her nap in it and then played in the tidal pools with dada. She loved the ocean and wanted to keep going in the waves. Then the minute she got in she wanted out because it was really cold and then after warming up in a minute or two would want to go back. Her love of the water is one of the ways we know she is truly our daughter. She was just delighted with the whole thing. She even had her first ride on the Merry-G0-Round, though I don't think we will do it again because it made her pretty dizzy. Not a good thing with the seizure factor in there.

At the farm yesterday she actually initiated reaching out to touch the sheep. She laughed at the baby goats who all wanted to meet her. She has also started signing. Really signing. She will imitate me signing and will sign back. This is a HUGE new development.

That is the current state of things. Apologies to all for not getting back to you more quickly. Looking at the computer is painful right now, it seems to make my headache worse. I will post some pictures tomorrow and post responses to everyone's comments. Thanks to all for your leads on alternative treatments for Ellie and healing thoughts.