Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!
The short of it – we may never know what causes our little one to struggle. It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally.
However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.
To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone. She again listened and heard all I had to say on everything we’ve been through the past couple of years with her. She gave advice and took a good look over her, just as she had with Riley.
Her solutions here were a little more complex, but not by much.
1. We are doing an MRI on her brain. Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.
2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course.
Why are we doing these? Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s. She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.
And onto the HOW’s…
1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for monthly visits
5. Restarting Physical Therapy
All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues. Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.
And that is where we stand now. Therapy, therapy…and more therapy. I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.
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All taken w/ Canon Rebel XTi. All SOOC.
Beautiful Disgrace:
Making Magic:
Color to draw the eye:
Color to draw the ear:
Color to draw the mind:
The rarely seen self-portrait:
(taken in window, and taken because I knew it would be softer/muted/fuzzy)
That’s it for this week! Check out more amazing winners over at Lotus’!!
And if you’re curious, the reason that gorgeous cheesecake picture has the title it does is because it was the worlds most beautiful cheesecake but because I had make it in a larger pan than I was used to I’d undercooked it…so it was gorgeous, but ultimately inedible.
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Last year I was afraid to try again.
Five months ago I took the leap.
Four months ago I was afraid to hope, but felt it creeping in.
Today was the big day. Technically it was the FIRST of TWO big days. We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.
I got up and the crack-of-dawn o’clock and hopped in the shower. I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car. Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city. We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.
And we waited. and waited. and waited. 30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.
It was worth the wait. It was worth the 4 months it took to get into her office to even see her. It was worth the hour wait. Why?
For an hour and a half – a FULL 90 minutes – she sat in that room. She never left. She sat there. She listened. She talked. She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.
She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.
We have confirmations, we have suggestions…we are feeling hope.
I go back on Monday with Angel. At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today. Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope. The adults.
Do we now have all the answers? Heavens, no. But this doctor is helping us define a path. For each girl, individually. She is listening to us.
And that…that is the most wonderful thing in the world.
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In the morning when you rise
I bless the sun, I bless the skies
I bless your lips, I bless your eyes
My blessing goes with you
In the nighttime when you sleep
Oh I bless you while a watch I keep
As you lie in slumber deep
My blessing goes with you
This is my prayer for you
There for you, ever true
Each, every day for you
In everything you do
And when you come to me
And hold me close to you
I bless you
And you bless me, too
When your weary heart is tired
If the world would leave you uninspired
When nothing more of love’s desired
My blessing goes with you
When the storms of life are strong
When you’re wounded, when you don’t belong
When you no longer hear my song
My blessing goes with you
This is my prayer for you
There for you, ever true
Each, every day for you
In everything you do
And when you come to me
And hold me close to you
I bless you
And you bless me, too
I bless you
And you bless me, too
~Celtic Woman – The Blessing
(Day one of NaBloPoMo and I’m already cheating…but really, the song called to me…I thought the words were beautiful…so I tied in some pictures of my wonderful family…what better way to start a month of posts?)
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Until now I’ve been happy with our school system. Brandon has thrived and learned and had his intelligence recognized. Not one thing has given us pause when it’s come to his schooling. The girls were a different matter – but with Brandon we’ve not had problems…
Yesterday became the day – the first time I had to really sit back and wonder at things. I became very disappointed in the school’s handling of a situation that affected me, my son, my husband.
Brandon blacked out in school. We don’t know why. We don’t know how. We only know that it was for a couple of minutes, and that it improved after he ate lunch.
We never had a chance to get him and take him to the doctor when it would have been effective. We didn’t even know it happened. Why?
They called us – twice. Once on the home phone and left a message (I was in the bathroom – heard phone ring but not the answering machine). Once on my cell phone (which had a dead battery).
Did they call ANY other number on our emergency number list?
Did they call Archie? My mother? My father?
No.
They didn’t even LOOK at his emergency card. They asked HIM for the numbers (he doesn’t have all of those memorized!)!!
They did not try to call the home number again. At all.
It wasn’t until I happened to glance at our answering machine 4 hours after the initial phone call that I found out.
Meanwhile Brandon spent at least 30 minutes in the nurses office freaking out over what had happened to him and he had no one to comfort him but a school nurse. I live two minutes from the school I could have picked him up and had him at the doctors office (another 3 minutes away) in no time.
By the time I found out he’d finished the entire school day.
Archie and I are NOT happy. We are trying to decide how best to address this with the school. It was handled exceptionally poorly and we are nowhere near okay with it at all.
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]]>I redid a lamp and an end table…and so proud of what I did!! I’m determined to bring some color into my beige room, and using my mom’s quilt as inspiration for the colors.
The table before:
The lamp before:
And both after…..
(that’s the top of the table w/ distressing…)
So happy with my results. I’m waiting until after I’m done with all of this madness:
(that is just a whisper, a teeny-tiny note of all the crafts I have half-done and done for Christmas this year)
Before I finish with the new pillows (w/ the same fabric as the lamp as well as other fabric).
Tomorrow is Samhain/Halloween (which I have done nothing for *eep*) and then after that…November! The days are passing faster than I care to think about – but we’re all still here! Here’s to hoping November is far better with my posting – just need to force my way through this block!
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Riley has never been one for communication. She didn’t speak her first word until she was almost 2. Years of Speech Therapy have yielded a capability to say words and even full sentences. But actual communication? It’s a struggle and you’re never sure that she’s even actually being truthful – or just agreeing to get the conversation over.
When it is time to have a serious conversation with her, it’s like she instinctively gets the ‘confrontation’ vibe (even if not in trouble) and she shuts down. I wonder sometimes if we don’t need to resort to a complex series of clicks, whistles, and hand gestures to communicate with her.
The other night we had to have one of those. We wanted to talk about something – but to actually get her real input on it. We attempted a few formulas and eventually got a semblance of a conversation – consisting mostly of nods and yes’s or no’s from the Riley-girl – but a conversation.
We started by making sure she felt ’safe’…sitting by Daddy w/ Mommy across the room – and sissy in bed. Daddy talking to her without looking directly at her. Occasionally I would ask a question in a different way.
A few words later, several head nods later…the conversation was over with Mommy having joined them on the couch and a snuggle session in full force. We were soon tackled by a little tornado of a monkey and all was righ twith the world again.
Have I mentioned how jealous I get going to blogs and seeing 2 & 3 year olds having true conversations and clever comments posted? Brandon was like that 10 years ago…now my girls are almost 4&5 and I still don’t have it with them…although Angel is getting closer than Riley (but Angel is pure goof-ball *G*).
But with baby-steps…eventually I’ll be having conversations with my daughter so brilliant that it will be ME not able to keep up…and I’ll be mystified that it was ever such a struggle to converse. At least, that is the dream.
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Watch that last step it’s a doozy!
I had no intentions of ending up disappearing for this long. I have at least a dozen half-baked and sometimes half started posts in my head and on my dashboard waiting to be written. I have no good explanation except…”oh hai, I have blog?” Yeah – I could just never hit publish or wrap my head around actually completng a post.
On a good note – real life has been absolutely packed with stuff. Our October calendar was packed full of activites of which we’ve only done about 1/2…because we also had some illness creep through and things like cruddy weather getting in the way.
Instead of blogging I’ve been driving my wonderful husband Archie nuts with the crafting supplies now absolutely overflowing out of their previously neat and tidy corner. I’m making presents and decorations for the upcoming Yule/Christmas season!
I have made several of the decorations. Two adorable little pettiskirts, and overskirts. I’ve got the materials nearly completed for two twirly skirts for which I’m making my own pattern and hoping to let them both be free and overskirts for the pettiskirts. I’ve also started other gifts, but I can’t say what they are on this public area 
Brandon has been going forward in school like wildfire. He has been doing his afterschool program and loving it. His grades are (mostly) holding on great and we went to his first band concert this year! I actually got to go on a Field Trip with him this year – to the zoo! It was great finally meeting some other parents in his grade and getting to the zoo. I’m getting ready to go in a few weeks to the formation of the new parents group that’s forming along the lines of a PTO…I’ve been painfully aware over the past few years that I’ve never been involved enough in these things – so I’m trying to be now.
Today I finally got the girls to the new homeschool group. Riley got stung by a bee, but it didn’t hold her back. They had a blast and I had a nice time socializing with the moms….and being able to come home and tell Archie about the large group of (successfully) homeschooled kids from the girls age up to 17! I think I can learn a lot from these women and look forward to going again next week!
I’ve also been really busy doing some behind the scenes stuff online…I have a lot more work to do in that area, but hopefully I won’t forget this place again!! Or any of you! I feel like I’ve gone to no blogs at all lately…and it’s time to rectify that right now!!
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Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus. Go to her site to see more winners!
I’m trying to play catch up in my hundreds of pictures (finally) that I’ve taken in the past few months and not edited at all. This is batch 1. Taken in Nashville, Indiana. We had some family visiting from out of town and the entire family headed down to Nashville for some shopping and walking. I hauled along my camera and got some shots. I really want to head back down with another photog and just take a photo walk (and drive through BC during full color). Anyway, without further ado – the shots all taken with my Canon Rebel XTi.
More coming next week…or during the week. Whenever I manage to get them out!! I’m trying to catch up, but there’s a LOT!
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Did you know that there are only 100 days left until Christmas?
Two days ago I got hit with the bug. Yup, already. I’ve told Archie to make me list of his co-workers and friends that he wants included on the list. Because I’m making plans.
Last year I made well over 1000 cookies, that we pigged out on, I sent in a plate w/ hubs to work, I went to a cookie exchange and took a plate of ALL my cookies-not just my exchange cookies. I took them to my parents – and we ate them ALL.
This year I’m all about the homemade gifts. I can’t go into too much detail because people read this blog that will get some of those gifts But I’m making my list, and I’m checking it a dozen times.
I have recipes lining up to make even MORE cookies than previous years, and candies. I’ll make gift bags of the goodies for friends and family…and for family I’ll also have some non-edible gifts.
The girls are getting homemade clothes, and I also have purchased clothes for both them and Brandon. So far I’ve only spent about $40 total and have all of their clothes shopping done (this far in advance! NEVER happens!).
I have gifts planned for all the youth (older, younger, and unborn)…and simple gifts for the extended family. If all goes well no one will be without a gift – even if it’s a goodie bag of dessert 
I’ve also started giving hubby ideas of what I want *G* Now if he’d do the same (although he’s sort of predictable…I think I can guess)
I hope you’re making your plans…it seems so far – but it passes by so fast! I hope to finish early…there are other holidays to plan for
******
Any blogging buddies that want a care package of my goodies better email me now so I can add you to my list!!
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