Usher Syndrome

I freely admit that I am a pessimist. I think of the worst possible scenario and replay it over and over in my head. On the positive side, I am always prepared for the worst thing that could happen and am never surprised when it actually occurs. In addition, I'm always pleasantly surprised when my negative scenarios are proven wrong. That's always a nice occurence.

When we first brought C home, though, I predicted that she had Usher Syndrome. She has such horrid balance. She never really showed night vision problems, but that's not saying much since she utterly refused to get out of bed in the dark. She would even lay in her own feces, wide awake. In fact, I always thought she was trained to stay in bed no matter what. In the last few months, though, C has finally overcome her need to wet or poop in bed and is actually getting up on her own to use the bathroom. What a joy that has been, I can tell you. But in doing this I have noticed that she stumbles and shuffles about in a dimly lit room... In fact, the other night, when it was clear and fairly bright, C went to the bathroom. In doing so, she was reaching out in front of her and inching her feet along the floor as if she couldn't see. I could see with such clarity from all the available light that I could nearly see the individual splotches of spackling on the walls (and I wear glasses for distance).

Today, though, has confirmed, in my mind at least, that C will soon be diagnosed with Usher's Syndrome. A couple of weeks ago I took M and C to their new pediatrician. During that visit they had their vision checked. Poor C showed a marked decrease in vision since her last eye exam; she went from a slight vision problem that really didn't need to be corrected to 20/40 vision. So, I immediately scheduled an eye exam for her.

The results of that eye exam (with a much more competent practitioner, I must admit) was that "her eyes are like those of a 40 year old" and that all of her tests indicate she has "Retinitis Pigmentosa (RP)". Her doctor told me that she has "very little peripheral vision" which totally explained why C walks all over things that are left laying on the floor as if she doesn't have a care in the world about destroying it or even as if she couldn't see it... Come to find out she really can't see it! Proving this was a picture of her retina. It showed C's retina to be filled with clusters of little black dots, which are used to diagnose RP. The National Institute on Deafness and Other Communication Disorders (see link below) states "An early sign of retinitis pigmentosa, compounded by deafness, is a near-certain indication of Usher syndrome."

At the onset of the appointment today I mentioned Usher Syndrome and my concern about it affecting C. After seeing the results of today's exam the doctor decided she wanted to do some research on Usher's over the next few weeks. She wants us back in about a month to review her findings. I'm still trying to get the kids' medical records sent down from Ft. Lewis. They will come in handy when trying to confirm C's medical history, which will help confirm or deny the possibility of Usher's.

Well, we'll work with what we've been given. I'd rather C be diagnosed earlier rather than later, if she's going to be diagnosed, in order to help her (and us) learn how to live with this syndrome. Hopefully we can all learn different and more inventive ways to communicate more fully with each other before she goes fully blind. Here's hoping and praying that I'm wrong. But if I'm right, here's hoping and praying that she can learn how to live a happy, healthy and productive adult life and that we can learn how to communicate to the fullest extent possible!!!

Either way, I think this is a great learning tool for others so that they, too, can be aware of this unique, but rare, syndrome. I've included a few links to allow those of you who are interested to get a more educated understanding about what Usher Syndrome actually is:
Wikipedia: http://en.wikipedia.org/wiki/Usher_syndrome
National Institute on Deafness and Other Communication Disorders: http://www.nidcd.nih.gov/health/hearing/usher.asp
http://www.nidcd.nih.gov/health/hearing/usher_new.asp (The latest findings regarding Usher's)

Belated Happy Easter

So I'm late, as usual, with my holiday post. But, what's new? I hope everyone had a beautiful holiday. We celebrated a day early beacuse my sister had to work on Sunday night. She needed to be able to get a good day's rest so that she wouldn't fall asleep answering 911 calls... We all know how horrid that would end up!!! For her and the people on the other end of the line!

Anyway, we thoroughly enjoyed our time together, though it would have been nicer had Matt been able to be with us (but that's to be expected with a deployment). ;) Needless to say, the rest of us had a nice time. I've added a few photos for your entertainment! Enjoy...

Dental Work...

Dental Work and More Dental Work! That's right, I'm going to be living in an Orthodonists office for the next year and a half. Poor little Mr. M must have numerous proceedures done in order to help elleviate the need of surgery at a later date. His Orthodonist actually said that he came in at the perfect age to bypass surgery later, so I'm pleased and will happily spend the $2,500 needed to give him this opportunity.

M has a class 3 bite (an underbite) and will need to wear a brace to pull his upper jaw forward and his lower jaw backwards. It will also help align his crooked bite.

But, before that happens M will need to have stretcher-thingy put into his mouth to help stretch his upper jaw. It is way too small for his teeth and desperately needs to be expanded. Every morning and night I will have to crank it wider in order to stretch his tiny upper jaw. My sister (-in-law) says that those HURT!!! Poor little dued!

But, before that happens, M will need to have braces to help straighten out his baby teeth. They are impacting his adult teeth and not allowing them to come through. That's being started on Monday. They say it doesn't hurt, but I'm sure it will and M will be a little bear! Not that I blame him!!!

Hopefully, by the time we're done, M will have a good set of teeth in a fabulous jaw!!! but, to say he is terrified is an understatement... Poor little man!!!

Safe Travels, My Love

Matt is officially off to Iraq today... SAFE TRAVELS, MY LOVE!!!

Good News...

Several years ago we bought 1.7 acres of bare land in Northern California from my great-grandmother. She was tired of paying taxes on land she would never use; most of the other family members really had no desire to own the land either and strangers weren't offering her anything she was even remotely interested in considering, so we happily bought it (for such a dirt cheap price that even today I feel terribly guilty). The area is stunning and Matt and I had ideas of retiring there.

But, we began adopting and, most recently, we wanted to adopt our 3rd child internationally. So, in November 2007 Matt and I sold the property in order to help bring home our next child. We had enough capital gain on the land to cover about 1/2 of our expenses.

The purchaser offered us our full asking price plus 10% interest if we would carry a note for 18 months. Knowing that the wait to bring home a child was lengthy we complied with her request. Sadly, the purchaser made only 5 payments, of which only 3 were for the full amount, before coming up with excuse after excuse for not paying the note.

Needless to say, after giving the purchaser more than 4 months to catch up on what was owed, we began the foreclosure process. It has taken several months and nearly $2,000 to get here, but we finally saw the light at the end of teh tunnel. The property was set to be auctioned off last week for nearly $10,500!

BUT, as is usual for me, something went awry: The original purchaser SOLD the property out from under us, TOOK THE CASH and RAN!!! Yep, she sold the property to an inexperienced 20 year old who didn't know that title checks were needed or that he should verify the legitimacy of purchasing the land... The poor kid got SCREWED!!!

I couldn't believe the gall of this lady... And, to be honest, I would love to track her down and sue the pants off of her for messing with me, my family, making me loose out on adopting another child, for screwing with a KID and, most especially, for getting away with EVERYTHING she did!!! I ABHOR people like that. It's those kind of people that make humanity so lacking in trust and trustworthiness... SO SAD!!!

Anyway, back to where the good news comes in. On March 4th we got a call from our foreclosure agent who explained what had happened, which, of course, made me panic because I could just imagine all that I would loose. Thankfully, the new turn of events just put the auction on hold for an additional week. The new owner had to be notified, in writing, of the foreclosure and he had to be allotted a certain amount of time to come up with the appropriate funds to legally purchase the property, if he so chose. The new date for the auction was set for March 18th at 11:00am... Which will never take place because the new owner was able to come up the money, which I will have in my hands by Friday (Monday, at the latest).

Needless to say, as soon as that check gets here my happy little self is making a nice little investment in preparation for our next adoption (after I take myself out for dinner in celebration, of course... Cuz after this fiasco I deserve it)!!!

PS... To all my bloggy friends... I'm so sorry I haven't had great opportunities to read your sites or to update my blogs, but know that I'm always thinking of you!!!

I Gotta Take Care Of My Momma!!!

These last few days (and weeks) have been a big rush where we've accomplished nothing... And a lot!

We got the kids established in school. C is attending 1st grade now rather than kindergarten because there is another 6 year old girl who is in 1st grade in a local school. We were struggling to give C the opportunity to learn further communication skills, social skills and educational skills while not forcing her to travel for 3 or so hours each day. We, in fact, had determined our best route for C was to simply mainstream her in our local school with an interpreter and hope for the best. Fortunately, though, there is a family living nearby who is deaf (C and I actually met them last night... I'll tell you all about that further down). Their daughter is the child with whom C is attending school. M is in the school here in town, but we decided to place him in kindergarten instead of 1st grade (which is where he was at back in Washington). He's finding the grade to be too easy, but at least he won't be made fun of when he repeats 1st grade (which he desperately needs). In addition, he gets to be in the same classroom as one of his cousins!!! That was pretty exciting for M. He's still a bit embarrassed about being placed back in kindergarten but I explained to him that the teacher really needed his help for the little kids. I think that helped boost his ego a bit and made the "demotion" a bit easier to handle. Both C's and M's teachers are fabulous and are both working hard on behalf of our kiddos... And the kiddos are really enjoying their placements.

My parents are still in Mexico... Having way too much fun, I'm sure. We're staying in their house while they are gone but will be moving into their guesthouse as soon as they return (Dad needs to get the gas line for our new gas fireplace hooked up and bled before I can use it). I have the TV and internet scheduled to be connected on the morning of the 16th and only need to get the gas tank filled, the hot water turned on and the phone connected before I can be comfortable up there.

Matt got off perfectly fine. He arrived back in Washington on Friday afternoon. One of his (our) friends picked him up and took him to the car rental place on post so he could have transportation for the week or so before he deploys. He's staying with yet another friend who is being wonderful by helping us out in this way. It's saving us loads of money and gives Matt a more friendly environment to hang out in instead of being lonely for the next 10 days or so.

Last night we attended a Deaf Social. We had a blast!!! It was great fun being able to sign and practice my receptive skills. I (quite literally) learned about 60 new ligns, though, to be honest, I can only recall about 25 or 30 of them... Not bad in my book! That just goes to show me that I can learn far more when there are others with whom I can communicate rather than simply trying to learn from a book. My biggest challenge is to learn how to use ASL while speaking. That is a huge challenge!!! We were at the pizza joint for just over 2 hours and by the time I arrived home my arms were aching from signing so much and my brain was fried from trying to think in both English AND ASL. But, again, I had a blast!

M and C spent most of the day with my sister and her family yesterday. They had way too much fun. The fun continued for M since he was invited to spend the night with them, too... It was his first sleep over at someone else's house and he loved it! He did come home quite shaken up with his asthma so we're struggling to get that back under control. He always gets a big asthma attack when we're here for any lengthy time, so I should have started his treatments as soon as we got here to help prevent this very thing. But, I was being a neglectful mother and didn't get it done. So, now we're playing "cure" instead of "prevention".

Anyway, last night my brother-in-law invited M, C and me to go to the snow with their gang. I preferred not to go because baby makes me super car sick (and the road to Tahoe can be terrible in that arena). But, I said M and C were more than welcome to go since this might be the last time they get to see their cousin (my brother-in-law is off to basic in a couple of weeks so Little Man might have to stay with his mother who, sadly, won't allow him to visit his step-family).

My sister and her gang showed up to pick up my niece and C. I was surprised, to say the least, when M walked in the door and said, "I not going, Momma." He generally loves the snow and will grab any opportunity to play in it. My sister pipes up with, "I'm not too sure he's feeling very well." I took one look at his face and utterly agreed... His asthma had blown out of proportion and he's now feverish. But, he didn't tell anyone that he was feeling poorly. His reason for not going to the snow with Auntie, Uncle and the kids was based solely on the fact that Daddy had a conversation with him before leaving for Iraq.

So, what did M say to Auntie when she asked if he wanted to go with them?

"Is Momma going?"
"No, Baby," Aunte replied.
"Who going to stay with my momma?"
"Nobody, Honey. Mommy's going to take a nap and rest for a bit while we're playing in the snow."
"Oh, I can't go. Daddy told me I need to stay home and take care of my Momma. He say I can't go to the snow."

Sure enough, his daddy did give him the whole "Man Of The House" speach and poor M has taken it almost literally (although I think the fact that he is sick and that he had been out of my presence for longer than 24 hours played a part in his decison making, too). So, I immediately called Matt and told him that he needed to clarify M's job of "staying home to take care of Momma", which he did!

On The Move Again

It's been quite a while since I've updated this blog. My sincerest appologies. I've been so sick lately... Growing babies is tough work!!! Somebody was watching over me today because I was illness free, finally! (Thank You!)

So, without further adoo... Here is a quick summary of the happenings here:

Matt has been working frantically to get both our family and himself ready for our move and his deployment. He's been packing up the house all by himself. I've been so sick this past month that I can barely get off the couch each day. It's agony just to get out of bed and walk down the stairs, never mind walk back up them each evening to crawl back into bed. And those two or three rare days that I've felt good (today being one of those days) I've been so weak that I feel light-headed just moving. But, I digress... Matt is working like crazy for both our family and the Army that I think he's actually getting worn out... And he hasn't even left for his deployment, yet. In fact, I'm willing to bet that he's anxious to get this done and over with so he can get to Iraq and have some peace and quiet (anything is better and more peaceful than he's had here at home lately). So, needless to say, I am more grateful to him for his perseverance than anyone else could imagine. He is an amazing husband, wonderful father and a fabulous soldier who takes each and every thing thrown at him and manages it like it's an every day task.

The kids are doing well. We have school at my parent's house all lined up for them. In fact, we are lining up a mainstream program within our local school for C. And, since the area/school is such a small community M and C will actually be in the same class (Kindergarten and 1st grade are taught by the same teacher)! It will be neat having my children attend the school I went to as a little girl!

Other than that, all is well. We'll be leaving Washington State on Monday and will make our trip into a 2-day event as we mosey down the western states. Hopefully, the weather and my health stay on our side, at least until we arrive! So, this is signing off for another couple of weeks (at least until we get settled)... See you on the flip side!!! ;)