This morning was rushed, as Fridays usually are. Friday is therapy day. The day, once a week, when we have to be in Spencer by 9am for Ellie's 3 hrs of therapy. It takes the morning and we usually get home around 1:00. Today we were running late (it happens.) About 10min. out I decided to call and let the therapists know we'd be a little late. As I started to tell the receptionist, she cut me off short. Apparently they HAD had us scheduled for therapy but then due to a conflict decided to MOVE our therapy to Thursday this week. Only problem was that they forgot to tell US they moved it. She apologized, I told her I understood and that it'd all work out. I decided we may as well go the last few miles into Spencer and hit a few stores while we had free time to burn.
We started at Menards. It was a fairly quick run to exchange a couple things and get the ducting supplies for my new range hood. Second stop was Bomgaars; Emma got a gift card for Christmas and has been dying to use it. She bought a hoof pick, horse wormer and a long handled scrub brush. (She's in horse-heaven!) Last stop, JCPenneys. I have a $25 gift card from Nicholas' parents and I really have been hunting for a pair of those tall boots everyone's wearing. I'm not usually one to go with trends, but this one I kinda like! So, lucky me, it was 60% off boots! WHOO HOO! So I thought. All it took was the simple fact that the Spencer mall apparently thinks carts are over-rated. I always seem to forget this until after we go in. Ughh. The cart is containment and spacial organization for Ellie. Without the cart, her world crumbles and so does mine. I hope this makes you laugh because writing it made it a lot funnier than it was in real time!
So this is how it played out... I pull Ellie close to have her sit by me on the bench, holding my hand as I struggle to try on a pair of boots. Meanwhile, Eva has taken off her boots and socks and it reaching to a box that apparently she thinks might work for her. (From the ladies section of course.) As she reaches, I ask her to come sit down. It's too late, she bumps a box under the table that bumps a stack on the other side under the table. It looked something like dominoes. The salesman wasn't so compassionate as Eva and I tried to re-stack. Sigh. With more determination, I head back to the seat (this time with Eva and Ellie in tow.) Ellie decides Eva has too much hair and tries to start war by pulling hair and trying to kick across me to Eva. All while I'm sitting in the middle trying to push them apart from one another. At this point, Emma has found that they make tall boots in kid sizes.. I tell her she can go to the endcap, 1/2 isle away to look. I find a boot that I like and amazingly it fits!
Meanwhile, Emma has found a pair she likes. Ellie is flopping on the floor like a fish; screaming and trying to kick anyone/thing within her reach. She's refusing to hold my hand or to be picked up. Little old ladies are walking by gawking and in their inattention to their own matters, bumping themselves into the shoe wracks. We've been in the store all of 20 minutes now and all the kids have unloaded their coats into my arms. About now, I am really wondering if we're going to make it out of the store or not!! I'm struggling to get Ellie to stand and hold my hand. (She loves to drop like a piece of spaghetti and make me look like a mom dragging a little girl by her arm.) I finally get her to stand and walk (without my hand) to the register. I make a deal with Emma, that I'll buy the boots as a birthday gift for her. (Yes, I still have to wrap them. No, you cannot have them today!) I opt out of the Mommy-boots. I vow to find a pair at SOS or Goodwill that someone else barely wore and replaced with a newer version at Christmas! We survive checkout - Praise GOD for that blessing! (He knew I was done and needed His help!) As I clicked the last buckle on the carseats I breathed a sigh of relief. I left slightly bitter that I can't even have a few minutes to shop like everyone else in the store. I'm blogging about it and then I'm letting it go. Grin. This is our life and I'm thankful for every part of it, even on the hard days.
I finished the night out with a 5mile run on the treadmill, listening to Francesca Battistelli. I'm getting ready for a 1/2 marathon! I'm hoping to run the first one in March (depending on the weather!) I'll be running a 10k while we're in San Diego next month. (Nicholas is going for work and we're tagging along.) So I have a goal tied to this running! My goal is to raise $100 per race-mile for IRSF (International Rett Syndrome Foundation.) The money goes towards research that is getting closer to a CURE everyday. If you'd like to support or sponsor a mile, I would GREATLY appreciate it! You can donate here ... http://www.firstgiving.com/fundraiser/elliesnyder/curerett4ellie
I pray God blesses you this week.
<3 Angie
Friday, December 30, 2011
Tuesday, December 20, 2011
Boston and Dr.Khwaja
Ellie and I decided Boston really isn't our kind of city. Easterners just aren't friendly enough. I'm used to looking at and smiling to each person I meet regardless of when or where I meet them. Boston is not such a place where people understand us midwesterners. I got an education from the tech that put Ellie's EEG leads on. She told me all about the subway. Told me if we ride the "blue line," we should only look down and never make eye contact. Well, glad we got that cleared up. I guess I'm a curious person and I enjoy browsing the people as they walk about or stand cramped in a subway car. Apparently, I need to be intentional about watching my feet!
Aside from Boston being an anti-social place, we had a lovely time during our 3 day stay! We spent all the free-time that we had browsing shops and window shopping. Of course, that's about all we did was browse! What a spendy city Boston is! I just have to tell you about the 2 thrift/consignment stores we visited. One was run by a hip, young gal who I'm certain wore some very "high-end" brands. I browsed the jeans finding brands I'd never heard of and gasped at every single price-tag. I checked and rechecked the lettering on the front window - yeah I'm certain it said "USED" clothing. So, you can imagine my surprise when I found jeans upwards of $200 hanging on the rack! I quickly moved to tops, looking for those $2-$3 bargains that I adore at home. My hopes of a trendy "Boston" outfit were quickly dashed at prices of $29 and up. I CERTAINLY was not paying $30 for shirts that were used and that I could by at home for $2 any day of the week. Sigh. So forget those knee-high brown boots that I adored on the streets and in the subway. I'll have to admire from afar. I refuse to pay $200 for something used that squishes my toes and squeezes my legs.
Well, on to the purpose of our trip you're saying!? Indeed! As I was told by several of you in advance of our trip, Dr.Khwaja was so sweet, compassionate and all around wonderful. He looked at Ellie's EEG (which is a brain check for seizure spikes and activity), her walking, climbing, jumping, hand-use, eye-hand coordination, her ability to follow movement with her eyes, as well as her back (to check for scoliosis.) Dr. Khwaja was positive. He told us that Ellie has what he calls "Preserved Speech Variant Rett Syndrome.) Essentially, this means that Ellie has either been able to retain, or relearn how to make speech sounds and some words. He explained that other girls with preserved speech variant of Rett often retain the ability to use their hands and legs for much longer than girls without the preserved speech variant. He also said that they typically have LARGER heads than "typical" girls rather than the "shrinking" heads that most Rett girls have. How thrilling for a doctor who is "the authority" on this syndrome, to tell us that we have reason to hope and reason to expect great things from Ellie. It's been encouraging to us going forward that there are no "knowns." It helps us to know that while this is who Ellie is and how she functions today, that may or may not change tomorrow. He noted concerns about her low-tone, below average motor planning,
Dr. Khwaja told me that the team has NOT YET chosen for the IGF1 trial. He assured me that they would be calling and writing to let families know in January, as to who got into the trial. He told us that we meet all of the criteria for the trial and that our application would definitely be considered as they select the participants. We will be anxious to hear!
We left Boston hopeful for the future. We will schedule another visit for 1 year from now though I pray we will be part of the trial and seeing him much more regularly!
I pray that you all have a very blessed and merry Christmas season. We are truly blessed to be parents and to have such caring and compassionate people surrounding us.
If you'd like to donate to IRSF and Rett Research please do so here. This link will take you to a FirstGiving page I've created to explain my latest endeavor. I've set some personal goals and tied some fundraising goals to those training goals. I thank God for chosing me to be Ellie's momma and I pray for a cure to Rett for my blessing and my inspiration; Ellie!
Aside from Boston being an anti-social place, we had a lovely time during our 3 day stay! We spent all the free-time that we had browsing shops and window shopping. Of course, that's about all we did was browse! What a spendy city Boston is! I just have to tell you about the 2 thrift/consignment stores we visited. One was run by a hip, young gal who I'm certain wore some very "high-end" brands. I browsed the jeans finding brands I'd never heard of and gasped at every single price-tag. I checked and rechecked the lettering on the front window - yeah I'm certain it said "USED" clothing. So, you can imagine my surprise when I found jeans upwards of $200 hanging on the rack! I quickly moved to tops, looking for those $2-$3 bargains that I adore at home. My hopes of a trendy "Boston" outfit were quickly dashed at prices of $29 and up. I CERTAINLY was not paying $30 for shirts that were used and that I could by at home for $2 any day of the week. Sigh. So forget those knee-high brown boots that I adored on the streets and in the subway. I'll have to admire from afar. I refuse to pay $200 for something used that squishes my toes and squeezes my legs.
Well, on to the purpose of our trip you're saying!? Indeed! As I was told by several of you in advance of our trip, Dr.Khwaja was so sweet, compassionate and all around wonderful. He looked at Ellie's EEG (which is a brain check for seizure spikes and activity), her walking, climbing, jumping, hand-use, eye-hand coordination, her ability to follow movement with her eyes, as well as her back (to check for scoliosis.) Dr. Khwaja was positive. He told us that Ellie has what he calls "Preserved Speech Variant Rett Syndrome.) Essentially, this means that Ellie has either been able to retain, or relearn how to make speech sounds and some words. He explained that other girls with preserved speech variant of Rett often retain the ability to use their hands and legs for much longer than girls without the preserved speech variant. He also said that they typically have LARGER heads than "typical" girls rather than the "shrinking" heads that most Rett girls have. How thrilling for a doctor who is "the authority" on this syndrome, to tell us that we have reason to hope and reason to expect great things from Ellie. It's been encouraging to us going forward that there are no "knowns." It helps us to know that while this is who Ellie is and how she functions today, that may or may not change tomorrow. He noted concerns about her low-tone, below average motor planning,
Dr. Khwaja told me that the team has NOT YET chosen for the IGF1 trial. He assured me that they would be calling and writing to let families know in January, as to who got into the trial. He told us that we meet all of the criteria for the trial and that our application would definitely be considered as they select the participants. We will be anxious to hear!
We left Boston hopeful for the future. We will schedule another visit for 1 year from now though I pray we will be part of the trial and seeing him much more regularly!
I pray that you all have a very blessed and merry Christmas season. We are truly blessed to be parents and to have such caring and compassionate people surrounding us.
If you'd like to donate to IRSF and Rett Research please do so here. This link will take you to a FirstGiving page I've created to explain my latest endeavor. I've set some personal goals and tied some fundraising goals to those training goals. I thank God for chosing me to be Ellie's momma and I pray for a cure to Rett for my blessing and my inspiration; Ellie!
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