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!
Tuesday, November 29, 2011
Rett Syndrome 101
Maybe I passed you a card and you're only beginning to get to know our Ellie girl. I decided a post simply stating what Rett Syndrome is should be found here somewhere!
If you want a resource or two, www.rettsyndrome.org and http://www.nichd.nih.gov/health/topics/rett_syndrome.cfm are the authorities on Rett Syndrome. Much of the information I will share in this post I am pulling directly from their sites.
What is Rett syndrome
Rett syndrome is a neurological and developmental disorder that mostly occurs in females. Infants with Rett syndrome seem to grow and develop normally at first, but then stop developing and even lose skills and abilities. For instance, they stop talking even though they used to say certain words. They lose their ability to walk properly. They stop using their hands to do things and often develop stereotyped hand movements, such as wringing, clapping, or patting their hands.
Rett syndrome is considered one of the autism spectrum disorders. Most cases of Rett syndrome are caused by a mutation on the MECP2 gene, which is found on the X chromosome. For more information on the MECP2 gene, see the What causes Rett Syndrome? (PDF - 697 KB) section of NICHD’s Rett Syndrome publication.
Rett syndrome is considered one of the autism spectrum disorders. Most cases of Rett syndrome are caused by a mutation on the MECP2 gene, which is found on the X chromosome. For more information on the MECP2 gene, see the What causes Rett Syndrome? (PDF - 697 KB) section of NICHD’s Rett Syndrome publication.
What are the symptoms of Rett syndrome?
Beginning between 3 months and 3 years of age, most children with Rett syndrome start to show some of the following symptoms:
- Loss of purposeful hand movements, such as grasping with fingers, reaching for things, or touching things on purpose
- Loss of speech
- Balance and coordination problems, including losing the ability to walk in many cases
- Stereotypic hand movements, such as hand wringing
- Breathing problems, such as hyperventilation and breath holding, or apnea when awake
- Anxiety and social-behavioral problems
- Intellectual and developmental disabilities
- Scoliosis, a curving of the spine that occurs in approximately 80 percent of girls with Rett syndrome
- Seizures
- Constipation and gastro-esophageal reflux
- Cardiac or heart problems, specifically problems with the rhythm of their heartbeat
- Problems feeding themselves, trouble swallowing and chewing
- Problems with sleep, specifically disrupted sleep patterns at night and an increase in total and daytime sleep.
What is the usual course of Rett syndrome?
Health care providers view the onset of Rett syndrome symptoms in four stages:
- Early Onset Phase – Development stalls or stops.
- Rapid Destructive Phase – The child loses skills (regresses) quickly. Purposeful hand movements and speech are usually the first skills lost.
- Plateau Phase – Regression slows, and other problems may seem to lessen or improve. Most people with Rett syndrome spend most of their lives in stage 3.
- Late Motor Deterioration Phase – Individuals may become stiff or lose muscle tone; some may become immobile.
What is the treatment for Rett syndrome?
There is currently no cure for Rett syndrome. However, girls can be treated for some of the problems associated with the condition. These treatments generally aim to slow the loss of abilities, improve or preserve movement, and encourage communication and social contact.
People with Rett syndrome often benefit from a team approach to care, in which many kinds of health care providers play a role, along with family members. Members of this team may include:
- Physical therapists, who can help patients improve or maintain mobility and balance and reduce misshapen back and limbs
- Occupational therapists, who can help patients improve or maintain use of their hands and reduce stereotypic hand movements.
- Speech-language therapists, who can help patients use non-verbal ways of communication and improve social interaction.
Other options, such as medication (such as for constipation or heart problems) or surgery (to correct spine curvature or correct heart defects) are also effective for treating some of the symptoms of Rett syndrome.
Tuesday, November 22, 2011
Fall Update - November
We're getting a bike!! Shhhh ... don't tell Ellie... it's going to be a surprise! We've finally gotten Ellie approved for a bike that she won't be able to flip and that, prayerfully, she'll be able to learn to ride on. Luckily, we have a pretty awesome bike-shop in town! The owner there has worked his way through catalogs and different ideas to come up with a bike that he thinks will work for Ellie. I'm ordering it in the morning and hoping it will be here for Christmas! :) BEST part is that we got the bike approved as a therapy tool and it will be covered through her waiver. Getting things approved is next to impossible, so we're thrilled that they're covering this. We've been saving our respite money all year to go towards this. Figuring out a way for Ellie to ride a bike safely will be so worth the effort!
Now, simultaneously we're still working getting the speech device bought for Ellie. I got confirmation last week that the pre-authorization paperwork has been submitted to our insurances. That's the biggest step, getting the initial request and supporting paperwork submitted so insurance can approve or deny. If they deny, then we move on to appeal the decision and provide additional support for Ellie's need of the device. The device we're trying to buy is and EcoPoint2 with Tobii Eye Gaze technology. It's an amazing device with incredible potential to grow and expand to meet Ellie's needs. The only thing better would be eye-gaze on an Ipad!! Ipad's have the capability to use TouchChat HD which is an app. that allows kids to touch the image and the device to speak for the user. Sadly, they haven't mastered eye-gaze for ipad's yet :( The only disadvantage to the EcoPoint is that it's large, heavy and requires a tripod stand to be used. Sooo, it's just a little more to haul but more importantly it only lets her have the option to "talk" when it's set up and she's at a chair/table setting. In spite of the little disadvantages, we're thrilled with the doors this device has already opened to Ellie!
Ellie's doing so well in school! She loves seeing her little friends and they're so sweet back to her. Ellie regularly blows kisses to her teachers when we leave school in the afternoon, which assures me that she does enjoy being there and has developed relationships with her teachers. I'm so thankful for such wonderful women with hearts for special kids. I continue to be amazed that Ellie can bottle her aggression and save it for Eva at home. (Poor Eva!) We've seen an increase in aggression at home, which is tough. Some nights I feel like I need cages!! Eva's finally to the age and size that she feels confident enough to fight back. We always thought that after she clobbered Ellie back a couple times the aggression would simmer and she'd be more careful about attacking. Unfortunately, not so. The trouble is that Ellie's aggression is starting to rub off on Eva, it's tough trying to device a parenting plan that differs so greatly between kids for the same behavior. We're struggling through this phase, praying that it passes quickly and that Eva learns new tactics.
I know that there are days when I underestimate how hard it is to be Ellie's sister. I'm so proud of Emma for being open and honest with people about Ellie. I know that because of our unique situation, Emma has a lot more responsibility than most almost 8 year olds. On the days when she goes out of her way to modify activities so that they can include Ellie, it melts my heart. On the days when she's lost her cool, I have to remind myself that she's only turning 8 and how remarkably well she does considering. Eva continually amazes with with her forgiving spirit. I kid you not, she can take a slap to the face and 2 minutes later kiss Ellie when she falls down. Repeatedly, Eva is the one to ask me if Ellie can get up yet, even though she was the one that just got slammed into the cupboard by Ellie or shoved onto the slate floor. Eva is how I define mercy. I assure you God knew I needed this loving, forgiving, spunky, gum-chewing 3 year old!
So, everything else updated, now on to the intense Rett Syndrome stuff. Over the course of the past few months, Ellie's OT has continually been concerned about Ellie's loss of fine motor skills in her left hand. What was a fine thumb to pointer pinch to pick up items gradually turned into a full hand grab. The left side, not being her dominant, has always been a bit behind her right and it still is just to a different degree. This is one of our biggest concerns right now and something that I sit and think on. Last week Jen (our OT) told me that she's going to focus on "gross fine motor" at this point. What that means is that she's going to focus on creating success for Ellie with that larger grasp rather than forcing her to do the fine motor picking up that she struggles with. She certainly still has the ability at times, with the right motivation, it's just that overall her fine motor skills have deteriorated. What used to be a very nice hand-grip on her silverware, is now fist hold, making it harder for her to control her spoon or fork and nicely get it to her mouth. We're seeing her resort to hand-feeding a lot more often than she did just 3 months ago. We know we're utterly blessed to have a 5 1/2 year old daughter that still walks, RUNS even, that can feed herself normal table food, and who can verbalize sounds and a handful of words. We're blessed that Ellie so quickly figured out eye-gaze and that at some point in the next few months, Ellie will get a "talker" that will allow her to have a voice!
The other struggle we're having lately is seizures, or at least they seem to be seizures. They're occurring anytime that Ellie's woke up from a deep sleep. She appears 'out of it' and different parts of her body shake. Her eyes pop wide open and roll up, legs and arms go stiff, she arches her back and her head is pulled back, most often her fingers look like she's typing or playing piano as they jerk and flinch. It's probably the toughest thing to watch. I've seen it dozens of times and still every time I panic inside. I avoid waking her but there are sometimes when just the slightest noise or movement causes the reaction. It makes me so glad that we have an appointment with Dr.Khwaja next month. We're really needing some peace about these events.
Our appointments in Boston were rescheduled until December because Dr.Khwaja needed the month of November off. The schedule shift actually worked better for us, since Nicholas will be home for the other two girls. Our Miracle Flights as well as our lodging were able to change our reservations without extra charges - another blessing! We're praying Dr.Khwaja can give us some answers about the fine-motor losses as well as the apparent-seizures. We know we'll be in good hands with Dr.Khwaja and his staff!
I can't believe it's already November and Thanksgiving is in 2 days. Not sure where this year went or how we've survived it at all. I know I never could have made it without friends lending their shoulders and words of support and love or without God to carry me when I was just plain too crushed to walk. To think that 7 months ago we got the call that Ellie had Rett and to think about what we've learned and all the things we've seen change. I know God uses "stuff" on this Earth to mold us into the people he wants us to be. If we're confident in our own strength and ability, we aren't as easily used by Him. This season of life has changed Nicholas and I, our entire family really. I turn 30 this weekend, which just is kind of the cherry on top of 2011. I don't feel old, I feel seasoned, refined, broken, molded, driven, and imperfect with character like an antique dresser.
I pray you feel blessed and loved this Thanksgiving. We all have so much to be thankful for.
~Angie
Now, simultaneously we're still working getting the speech device bought for Ellie. I got confirmation last week that the pre-authorization paperwork has been submitted to our insurances. That's the biggest step, getting the initial request and supporting paperwork submitted so insurance can approve or deny. If they deny, then we move on to appeal the decision and provide additional support for Ellie's need of the device. The device we're trying to buy is and EcoPoint2 with Tobii Eye Gaze technology. It's an amazing device with incredible potential to grow and expand to meet Ellie's needs. The only thing better would be eye-gaze on an Ipad!! Ipad's have the capability to use TouchChat HD which is an app. that allows kids to touch the image and the device to speak for the user. Sadly, they haven't mastered eye-gaze for ipad's yet :( The only disadvantage to the EcoPoint is that it's large, heavy and requires a tripod stand to be used. Sooo, it's just a little more to haul but more importantly it only lets her have the option to "talk" when it's set up and she's at a chair/table setting. In spite of the little disadvantages, we're thrilled with the doors this device has already opened to Ellie!
Ellie's doing so well in school! She loves seeing her little friends and they're so sweet back to her. Ellie regularly blows kisses to her teachers when we leave school in the afternoon, which assures me that she does enjoy being there and has developed relationships with her teachers. I'm so thankful for such wonderful women with hearts for special kids. I continue to be amazed that Ellie can bottle her aggression and save it for Eva at home. (Poor Eva!) We've seen an increase in aggression at home, which is tough. Some nights I feel like I need cages!! Eva's finally to the age and size that she feels confident enough to fight back. We always thought that after she clobbered Ellie back a couple times the aggression would simmer and she'd be more careful about attacking. Unfortunately, not so. The trouble is that Ellie's aggression is starting to rub off on Eva, it's tough trying to device a parenting plan that differs so greatly between kids for the same behavior. We're struggling through this phase, praying that it passes quickly and that Eva learns new tactics.
I know that there are days when I underestimate how hard it is to be Ellie's sister. I'm so proud of Emma for being open and honest with people about Ellie. I know that because of our unique situation, Emma has a lot more responsibility than most almost 8 year olds. On the days when she goes out of her way to modify activities so that they can include Ellie, it melts my heart. On the days when she's lost her cool, I have to remind myself that she's only turning 8 and how remarkably well she does considering. Eva continually amazes with with her forgiving spirit. I kid you not, she can take a slap to the face and 2 minutes later kiss Ellie when she falls down. Repeatedly, Eva is the one to ask me if Ellie can get up yet, even though she was the one that just got slammed into the cupboard by Ellie or shoved onto the slate floor. Eva is how I define mercy. I assure you God knew I needed this loving, forgiving, spunky, gum-chewing 3 year old!
So, everything else updated, now on to the intense Rett Syndrome stuff. Over the course of the past few months, Ellie's OT has continually been concerned about Ellie's loss of fine motor skills in her left hand. What was a fine thumb to pointer pinch to pick up items gradually turned into a full hand grab. The left side, not being her dominant, has always been a bit behind her right and it still is just to a different degree. This is one of our biggest concerns right now and something that I sit and think on. Last week Jen (our OT) told me that she's going to focus on "gross fine motor" at this point. What that means is that she's going to focus on creating success for Ellie with that larger grasp rather than forcing her to do the fine motor picking up that she struggles with. She certainly still has the ability at times, with the right motivation, it's just that overall her fine motor skills have deteriorated. What used to be a very nice hand-grip on her silverware, is now fist hold, making it harder for her to control her spoon or fork and nicely get it to her mouth. We're seeing her resort to hand-feeding a lot more often than she did just 3 months ago. We know we're utterly blessed to have a 5 1/2 year old daughter that still walks, RUNS even, that can feed herself normal table food, and who can verbalize sounds and a handful of words. We're blessed that Ellie so quickly figured out eye-gaze and that at some point in the next few months, Ellie will get a "talker" that will allow her to have a voice!
The other struggle we're having lately is seizures, or at least they seem to be seizures. They're occurring anytime that Ellie's woke up from a deep sleep. She appears 'out of it' and different parts of her body shake. Her eyes pop wide open and roll up, legs and arms go stiff, she arches her back and her head is pulled back, most often her fingers look like she's typing or playing piano as they jerk and flinch. It's probably the toughest thing to watch. I've seen it dozens of times and still every time I panic inside. I avoid waking her but there are sometimes when just the slightest noise or movement causes the reaction. It makes me so glad that we have an appointment with Dr.Khwaja next month. We're really needing some peace about these events.
Our appointments in Boston were rescheduled until December because Dr.Khwaja needed the month of November off. The schedule shift actually worked better for us, since Nicholas will be home for the other two girls. Our Miracle Flights as well as our lodging were able to change our reservations without extra charges - another blessing! We're praying Dr.Khwaja can give us some answers about the fine-motor losses as well as the apparent-seizures. We know we'll be in good hands with Dr.Khwaja and his staff!
I can't believe it's already November and Thanksgiving is in 2 days. Not sure where this year went or how we've survived it at all. I know I never could have made it without friends lending their shoulders and words of support and love or without God to carry me when I was just plain too crushed to walk. To think that 7 months ago we got the call that Ellie had Rett and to think about what we've learned and all the things we've seen change. I know God uses "stuff" on this Earth to mold us into the people he wants us to be. If we're confident in our own strength and ability, we aren't as easily used by Him. This season of life has changed Nicholas and I, our entire family really. I turn 30 this weekend, which just is kind of the cherry on top of 2011. I don't feel old, I feel seasoned, refined, broken, molded, driven, and imperfect with character like an antique dresser.
I pray you feel blessed and loved this Thanksgiving. We all have so much to be thankful for.
~Angie
Friday, October 21, 2011
Miracles Happen Everyday
Too often when I come here to write it's out of frustration or to VENT.
Today I'm here out of EXCITEMENT AND GRATEFULNESS!
Ellie and I are traveling to BOSTON in November to see Dr.Khwaja; a neurologist and Rett Specialist. EXPERTS like Dr.Khwaja are hard to find for things as rare as Rett Syndrome. We are so THRILLED that Ellie gets to see Dr.Khwaja! He is the lead investigator on the IGF1 Trial!!
Sooo...
My sister-in-law sent me an email linking several non-profit groups that help medically needy kiddos.
www.MIRACLE FLIGHTS.org
was one of those links.
After a couple days of paperwork and getting Doctor's signatures...
I'm THRILLED to tell you that we just got our CONFIRMATION EMAIL.
Our flights to Boston were purchased by MIRACLE FLIGHTS! Not having to pay the $600 for our tickets will make this trip AWESOME!
We are so thankful to the people there that CARE enough for our kiddos to do fundraising and volunteer their time!
Miracle Flights will now be on our list of organizations to support and I hope our friends and followers will do the SAME!
Today I'm here out of EXCITEMENT AND GRATEFULNESS!
Ellie and I are traveling to BOSTON in November to see Dr.Khwaja; a neurologist and Rett Specialist. EXPERTS like Dr.Khwaja are hard to find for things as rare as Rett Syndrome. We are so THRILLED that Ellie gets to see Dr.Khwaja! He is the lead investigator on the IGF1 Trial!!
Sooo...
My sister-in-law sent me an email linking several non-profit groups that help medically needy kiddos.
www.MIRACLE FLIGHTS.org
was one of those links.
After a couple days of paperwork and getting Doctor's signatures...
I'm THRILLED to tell you that we just got our CONFIRMATION EMAIL.
Our flights to Boston were purchased by MIRACLE FLIGHTS! Not having to pay the $600 for our tickets will make this trip AWESOME!
We are so thankful to the people there that CARE enough for our kiddos to do fundraising and volunteer their time!
Miracle Flights will now be on our list of organizations to support and I hope our friends and followers will do the SAME!
Saturday, October 1, 2011
The Talker
Can I just say, "EchoPoint, Our family is in love with you!"
Ellie's trial speech device, the EchoPoint2, has been with us for about 4 weeks. I've never seen something so amazing! The device is calibrated to Ellie's eyes and when she stops and "gazes" on a picture for more than .7 of a second, it speaks the voice output programed into that picture. Within minutes, the first time trying the device with Ellie at home, she was opening new picture files and making choices. It's been incredible and validating for our family to watch her express preferences and needs. She's in there, she really is, she just can't get the words to come out verbally.
The second interesting thing about the EchoPoint is that it's a touch/eye gaze device. We've been baffled watching her try to use the device with her hands. If I place the device so that Ellie can touch it, she will. What's interesting is that she'll hit the same button over and over again. She doesn't vary her choices, or open new sets of pictures or menus. She's limited to basically the first page with 15 pictures. When she's using eye gaze function, she can zip through 5 menus of 15 pictures each, making choices and communicating along the way. I know it's a bit hard to comprehend so I'll attempt to explain.
When turning on the device, there are 15 pictures. Some of them just speak, while others open a completely new set of 15 pictures. They're organized by topic, location, items, etc. For example on the main page is "pages" and activating that key opens a new page of 15 buttons. On the new page one button is "school" and by activating the "school" button, a new set of 15 buttons appear. Within that set there is a button for "center time" that opens 15 new buttons, each of them a choice that Ellie can make for her center time activity.
One day as I was getting dinner on the table I casually said to Ellie, "Why don't you tell Emma about school?" As I walked into the kitchen I heard nothing until "library center, library center, library center." I came in to see that Ellie had activated "pages" and then "school" and then "center time" and then "library center" multiple times. I had attended school that day with Ellie and she had chosen to be in the "library center" for the duration of her "center time."
Amazing! Ellie could not express this other than through her device. We feel so blessed to live in the technology era. The device we've had has been a trial and soon we will be without it again. We're working on purchasing one of our own but we've learned, through experience, this takes time when dealing with insurance companies. We're praying that the process moves smoothly and quickly, for Ellie's sake. Now that we've seen how clearly she is able communicate with her device, we don't want to see her without it.
Thanks for following us on this journey of life.
Ellie's trial speech device, the EchoPoint2, has been with us for about 4 weeks. I've never seen something so amazing! The device is calibrated to Ellie's eyes and when she stops and "gazes" on a picture for more than .7 of a second, it speaks the voice output programed into that picture. Within minutes, the first time trying the device with Ellie at home, she was opening new picture files and making choices. It's been incredible and validating for our family to watch her express preferences and needs. She's in there, she really is, she just can't get the words to come out verbally.
The second interesting thing about the EchoPoint is that it's a touch/eye gaze device. We've been baffled watching her try to use the device with her hands. If I place the device so that Ellie can touch it, she will. What's interesting is that she'll hit the same button over and over again. She doesn't vary her choices, or open new sets of pictures or menus. She's limited to basically the first page with 15 pictures. When she's using eye gaze function, she can zip through 5 menus of 15 pictures each, making choices and communicating along the way. I know it's a bit hard to comprehend so I'll attempt to explain.
When turning on the device, there are 15 pictures. Some of them just speak, while others open a completely new set of 15 pictures. They're organized by topic, location, items, etc. For example on the main page is "pages" and activating that key opens a new page of 15 buttons. On the new page one button is "school" and by activating the "school" button, a new set of 15 buttons appear. Within that set there is a button for "center time" that opens 15 new buttons, each of them a choice that Ellie can make for her center time activity.
One day as I was getting dinner on the table I casually said to Ellie, "Why don't you tell Emma about school?" As I walked into the kitchen I heard nothing until "library center, library center, library center." I came in to see that Ellie had activated "pages" and then "school" and then "center time" and then "library center" multiple times. I had attended school that day with Ellie and she had chosen to be in the "library center" for the duration of her "center time."
Amazing! Ellie could not express this other than through her device. We feel so blessed to live in the technology era. The device we've had has been a trial and soon we will be without it again. We're working on purchasing one of our own but we've learned, through experience, this takes time when dealing with insurance companies. We're praying that the process moves smoothly and quickly, for Ellie's sake. Now that we've seen how clearly she is able communicate with her device, we don't want to see her without it.
Thanks for following us on this journey of life.
It's been 3 years last week since my Grandma died. Thinking about her makes me cringe and smirk all at once. Gosh I miss her spunk, her perseverance, her passion. Several years ago, while Grandma was still living, an attorney and I were talking and he mentioned something Grandma had done or said. I remember thinking, "Oh Grandma." and shaking my head. I'll never forget what Hugh told me. He said his father had told him years before that she was a "survivor." I've thought of that moment time and time again. For some, she was too strong and opinionated; for most probably. Still, thinking about our years working and doing life together, I smile and miss her.
I wonder, just as I have for the years since Hugh said those words, which experiences made her a "survivor." Was it doubling the number of children she had by adopting 4 more while her own were still small? Maybe it was working at the packing house, or driving a straight-truck hauling seed-corn. Perhaps it was opening her own real estate office in 1981 and surviving in that market for more than 25years? Could it have been losing grandpa? Being alone for 10 years before marrying again? Maybe it was taking on the fight with ovarian cancer, and beating the odds. Was it spending her years working with people who didn't speak her language, needed help with everything from credit and immigration to jobs, children, and rides? Maybe it was her passion for serving and sharing her faith in a culture so wrapped up in being "politically correct."
Grandma was an amazing, spitfire, loving and passionate person. She never was afraid to speak her mind and tell people exactly what it was that they should be doing with their lives or their children. She loved people she didn't even know because she knew they needed loving. I've come to the conclusion that Bill was right about Grandma, she was a "survivor" but she did so much more than survive, she really loved in a way many are afraid to do. I only hope one day I can do the same.
I wonder, just as I have for the years since Hugh said those words, which experiences made her a "survivor." Was it doubling the number of children she had by adopting 4 more while her own were still small? Maybe it was working at the packing house, or driving a straight-truck hauling seed-corn. Perhaps it was opening her own real estate office in 1981 and surviving in that market for more than 25years? Could it have been losing grandpa? Being alone for 10 years before marrying again? Maybe it was taking on the fight with ovarian cancer, and beating the odds. Was it spending her years working with people who didn't speak her language, needed help with everything from credit and immigration to jobs, children, and rides? Maybe it was her passion for serving and sharing her faith in a culture so wrapped up in being "politically correct."
Grandma was an amazing, spitfire, loving and passionate person. She never was afraid to speak her mind and tell people exactly what it was that they should be doing with their lives or their children. She loved people she didn't even know because she knew they needed loving. I've come to the conclusion that Bill was right about Grandma, she was a "survivor" but she did so much more than survive, she really loved in a way many are afraid to do. I only hope one day I can do the same.
Tuesday, September 13, 2011
Big Sister Emma
On the way home from town tonight, Emma told me that today she made a note for her teacher.
Nothing too out of the ordinary for a 2nd grader, right?
Tonight she told me what the note said...
Someday I'm going to be a neurologist or a rett syndrome doctor.
My little sister, Ellie is 5. She has rett syndrome. Most 5 year old girls with rett syndrome can't walk or use their hands. They have to be in wheel chairs. My sister CAN walk but she can't talk.
....Emma told me that she hasn't talked about Ellie at school this year. She said it was easier for her to write this note to her teacher than to explain about Ellie. Tonight when I went to tuck Emma into bed, she was reading her gigantic "Human Body" book; looking at a two page spread on cells. She told me it's her favorite part of the book. It made me smile. I told her that there are special doctors that do research on cells just like that all day long. Her eyes lit up as she said, "REALLY?!" I looked at her and envisioned, an all grown up, Emma in a white lab coat standing over a microscope and I thought, "Someday you'll be working to cure the diseases of this world... but I really hope Rett is long gone by then."
Saturday, August 20, 2011
Missing Grandma Today
I've had "one of those days." Today would have been my Grandma Clara's birthday but she's passed away. Feels like just months ago but it's already been almost 3 years. We shared an office for 6 years, I learned so much from her. We were more like best friends or sisters than grandmother and granddaughter. The past few weeks have been tough on me and before when things were tough I could go sit with Grandma and we could figure it out. I really miss that.
We've had lots of changes happening. I'm just feeling sad, maybe it's that I'm finally letting myself digest the past several months. Maybe it's that some of those things are coming to a head and I just can't shove them to the back of my mind any more. We moved back "home" last week but it just doesn't feel like home. The landscape is so very different and all that's left is our house. Compared to the plethura of buildings that previously dotted our little corner of the world, it feels so empty. Last week, Emma started second grade which officially ended summer. Ellie starts school on Monday <sniffle> and I'm just plain not ready. I love her teachers and her room looks wonderful. I have every reason to be hopeful and excited about the opportunities she's going to have there and I am. I'm just struggling I guess, especially today.
Nicholas cannot handle when I show emotion. Apparently, I'm too opinionated and passionate and I need to just shut up. (I blame you for those traits Grandma.) I swear I've always been this person. I specifically remember trying to convert my middle school peers from Buhdism to Christianity, having heated conversations about abortion all throughout school, leading a bible study for my peers as an 8th grader, and always advocating for immigrants. I'm not sure how all of that suddenly gets to him and makes me over the top. Maybe I've intensified with age?! It doesn't matter who's changed or what's changed, I get that. I just really needed to vent and pour it out because if I don't that thread I'm hanging onto might break.
We've had lots of changes happening. I'm just feeling sad, maybe it's that I'm finally letting myself digest the past several months. Maybe it's that some of those things are coming to a head and I just can't shove them to the back of my mind any more. We moved back "home" last week but it just doesn't feel like home. The landscape is so very different and all that's left is our house. Compared to the plethura of buildings that previously dotted our little corner of the world, it feels so empty. Last week, Emma started second grade which officially ended summer. Ellie starts school on Monday <sniffle> and I'm just plain not ready. I love her teachers and her room looks wonderful. I have every reason to be hopeful and excited about the opportunities she's going to have there and I am. I'm just struggling I guess, especially today.
Nicholas cannot handle when I show emotion. Apparently, I'm too opinionated and passionate and I need to just shut up. (I blame you for those traits Grandma.) I swear I've always been this person. I specifically remember trying to convert my middle school peers from Buhdism to Christianity, having heated conversations about abortion all throughout school, leading a bible study for my peers as an 8th grader, and always advocating for immigrants. I'm not sure how all of that suddenly gets to him and makes me over the top. Maybe I've intensified with age?! It doesn't matter who's changed or what's changed, I get that. I just really needed to vent and pour it out because if I don't that thread I'm hanging onto might break.
Tuesday, July 5, 2011
Whirlwind
June 30, 2011
As you probably have guessed, the sudden happenings of our life kind of overtook my devotion to the blog. I know many of you have been waiting for an update since April probably. I do have a large sense of guilt in that some of you probably think I’ve fallen off the face of the Earth. Please know that I have not and that it’s not personal! God has taken me on a bit of a journey the last few months and while I’ve missed some of you soo sooo deeply. I’ve laid in bed wondering about you and become an insomniac of sorts over it. This has definitely been a season of purging. God’s been using this time to show me some things and I’ve been using this internet-less time to work like mad so that I can spend the fall/winter hopefully catching up with you all. I’ve stopped in a couple times briefly to rattle off the facts without much comment. I’ve had so many blog entries logged in my brain but never quite got them down in type. I should tell you that it’s 2am right now and a restless night of insomnia has left me here. Laugh. We have no internet (where we’re living now) so I’ve grown accustomed to saving emails, etc in Word to send/upload when I get time to stop at a restaurant with WIFI.
I think part of me has been relieved at the whirlwind of events surrounding Ellie’s new diagnosis. I do enjoy keeping busy and the last 2 months it’s been a way to keep my mind on the tasks at hand. It’s kept the fear at bay some, I think. Ellie had 3 bad nights a couple weeks ago. During all three, she cried in pain with her fists clenched at her chest. I know she wanted a drink one of the nights but I couldn’t get her to take the water bottle from me; even when I tried to uncurl her fingers and put them around the bottle. I held her, afraid that this was “IT” … the day she lost hand use. I held her and fretted until she finally relaxed enough to fall asleep. I laid in bed afraid, wondering how we’d adapt if one day that was the only thing she could do with her hands. Sigh. As I sit here, I’m tearing up thinking about that but with certainty that we’d manage to cope. I know it sounds cheesy but I really do find some comfort in knowing that God has a plan. I’m not a plan-a-holic like my friend, Tab. ;) I generally can roll with the punches. With Ellie, I find myself micro-analyzing her every move until I remind myself that I don’t have to “know” or “plan” or “predict” the future because God already has it done. Not that I don’t worry, but I’m learning to let Him carry what I know I cannot. Yet I’m still a work in progress.
Ellie turned 5 last week. She’s our Summer Solstice baby, born the first day of summer. While summer was definitely welcome in Iowa, I approached Ellie’s 5th birthday with some anxiety. Turning 5 is like turning over a whole new leaf and it does make me nervous. Ellie’s going to start school this year, which is huge for a Momma that’s taken care of pretty much all of her care for the last 5 years. Letting her go off with strangers for 8hrs a day gives me a bit of an anxiety attack. I know it’s a natural and essential part of development but I kinda like having all the control! Ellie’s going to be at a local school that’s big enough and has enough funding to give her everything she needs. She’ll be in a classroom with of 13 with 3 or 4 adults. I know that 4 of the children in the room have IEP’s and the other 9 are Headstart, “typical” kids. I’m not sure what my days will be like with only Eva. I’m sure it will change the dynamics of things around here! Eva kinda gets shorted on her “baby of the family” status because of Ellie’s needs. It’s amazing how things change and how kids adapt so much more naturally than adults. Eva’s really taken the roll of middle child in our family, she doesn’t get to be the needy, baby of the family very often. I chuckle at how both of the girls have become little therapists; imitating all the things they’ve seen and heard at our therapy time with occupational, speech and physical therapy. Emma played school with the girls a couple days ago and as she explained to me how she modified curriculum for Ellie (and very appropriately, I might add) I smiled and wondered if maybe some teachers could take lessons from her!! Emma’s a very logical girl. It was amazing to see how naturally she modified her “school,” keeping it “fair” to Eva by not changing things too much but still allowing Ellie to succeed.
Ellie turned 5 last week. She’s our Summer Solstice baby, born the first day of summer. While summer was definitely welcome in Iowa, I approached Ellie’s 5th birthday with some anxiety. Turning 5 is like turning over a whole new leaf and it does make me nervous. Ellie’s going to start school this year, which is huge for a Momma that’s taken care of pretty much all of her care for the last 5 years. Letting her go off with strangers for 8hrs a day gives me a bit of an anxiety attack. I know it’s a natural and essential part of development but I kinda like having all the control! Ellie’s going to be at a local school that’s big enough and has enough funding to give her everything she needs. She’ll be in a classroom with of 13 with 3 or 4 adults. I know that 4 of the children in the room have IEP’s and the other 9 are Headstart, “typical” kids. I’m not sure what my days will be like with only Eva. I’m sure it will change the dynamics of things around here! Eva kinda gets shorted on her “baby of the family” status because of Ellie’s needs. It’s amazing how things change and how kids adapt so much more naturally than adults. Eva’s really taken the roll of middle child in our family, she doesn’t get to be the needy, baby of the family very often. I chuckle at how both of the girls have become little therapists; imitating all the things they’ve seen and heard at our therapy time with occupational, speech and physical therapy. Emma played school with the girls a couple days ago and as she explained to me how she modified curriculum for Ellie (and very appropriately, I might add) I smiled and wondered if maybe some teachers could take lessons from her!! Emma’s a very logical girl. It was amazing to see how naturally she modified her “school,” keeping it “fair” to Eva by not changing things too much but still allowing Ellie to succeed.
I made contact with 2 different companies that sell eye-gaze devices. PRC was the most customer friendly and helpful and honestly that speaks to me, chuckle. Sharron is a speech therapist AND a rep for the company and was so helpful and understanding. We’re waiting for a device to come in so that we can “trial” it for a portion of the summer. We’re hoping we can have it until we get funding through to buy one! J We were so close to buying a touch device. After hearing all that I did about apraxia at the conference in Boston, I decided we needed to get an eye-gaze device or at the very minimum a device that could have eye-gaze added in the future. We started doing some low-tech work with a piece of plexi-glass and pictures behind it. We’re starting some data collection on how well Ellie can use her eyes for communicating, an essential part of getting insurance to pay for a device. I am really loving the changes we’ve made this month with speech therapy!! Laura is a wonderful asset to us at this point and I love how flexible and willing to rework things and to go with new ideas she is! The other girls and I spent this week’s session in the waiting room, for the first time. I think it went really well and may become our new norm. I think it’s easier for Ellie to concentrate and focus without the extra noise, movement and competition that the other two bring to the room. Having 3 hrs of quiet time to work with WIFI access was REALLY nice too!!
Ellie’s wanted so badly to be able to ride a bike for the past 2 summers. This summer she’s finally getting a new bike! We’ve started saving through our waiver program to buy a Kettrike. This specially designed bike has extra safety features along with things that will make it easier for Ellie to learn to ride and will make it easier for us to push/steer her. It’s also a bike that will grow with her for the next several years. We’re really excited about it! I’ll take pictures as soon as it’s here!!
Ellie’s wanted so badly to be able to ride a bike for the past 2 summers. This summer she’s finally getting a new bike! We’ve started saving through our waiver program to buy a Kettrike. This specially designed bike has extra safety features along with things that will make it easier for Ellie to learn to ride and will make it easier for us to push/steer her. It’s also a bike that will grow with her for the next several years. We’re really excited about it! I’ll take pictures as soon as it’s here!!
We’re making progress on tornado cleanup. It’s slow and tedious but we’re moving forward. Getting power back to the house has been such a frustration to me. It’s still not powered back up yet. It’s something I just cannot do on my own and so it’s just not getting done. In spite of my persistent pestering, we’re still without power – I’m not nagging but seriously it’s been almost 3 months!! – After yanking up glass-filled carpet I decided to hire BV Custom Floors to refinish the hardwood in the living room, hallway and all 3 bedrooms. I’m SOOO glad! Tim did an amazing job on the floors. The final coat of finish went on last weekend and at any point this week we can start moving furniture back in! *So all of you that have offered to help clean, scrub, and paint—I’ll need you soon!!** I’m so excited to be rid of carpet!! I promised Emma a fluffy rug for the center of her room and we’ll probably get one for each bedroom. I can’t wait to get back home! I’m so behind on everyone else’s lives – BOY HAVE I MISSED FACEBOOK!! So, the next few days are filled with hauling the remainder of iron from Pork 76 (last summer’s rehab.) We had the second half of the hog unit taken down this week. We’re hoping this makes the place more marketable as it will give us about 4 acres of tillable ground that we’re planning to plant to soybeans.
The source of a lot of my excitement the last few months has been English classes with The Bridge. I’m the English Coordinator and I teach one morning a week. It’s a huge source of joy for me. I absolutely love my students and my co-teachers. We’re have 9 classes per week and have 7 students in our morning classes. It’s been wonderful for me to be able to use my education/expertise in a way that serves and reaches out to the immigrant population of Storm Lake. I’m so excited about the ministry God has given us and the opportunities I’ve been given! J I could spend a week telling you all about each student and their personal stories and struggles and praises. They are my friends on a level that I don’t think I’ve gotten to experience enough in my life. I love the women I teach. I really, really, love them. These ladies have been through so much and yet I see how raw and openly they love and they make me do the same. I don’t feel the need to protect myself from them. They’re real and straightforward and we just mesh together without holding back. It’s so obvious to me that this was God’s plan and that his work is being done through The Bridge and through our English classes. It makes me joyful. J
I’ve thought so many times over the last last few years about the book I’m someday going to have to write. In the last few months I’ve decided it may have to be a series. Chuckle. So much has happened, changed, shifted that this hour and a half of writing (it is now 3:30am) seems like I’ve only skimmed the surface!
We’re heading out West soon. We need some time to just walk away from the endless work and we won’t unless we leave. I can think of a million things I should do instead but I know they’ll all be waiting for me when we get home!
Thanks for reading and caring.
Blessings,
Thanks for reading and caring.
Blessings,
Angie
Honestly...
I don't think I've ever said "this sucks" as many times as I have in the last 90 days. Those of you who know me well know that I pride myself in not being among the "criers." I can laugh about it now though... through tears. I spent the first hour after diagnosis hiding in my mother-in-laws bedroom crying my eyes out. Why in my in-laws bedroom you might ask? I really wish it were not part of this Rett journey... really! Nine days before we got "the call" that put us into this new Rett World, our farm was leveled by a tornado. You know I've sat and wondered... I've questioned... I've guilted... but seriously the timing just sucked. I mean there are some things in life that cannot be better described in any other manner... sometimes things just suck. I've tried being really optimistic and hopeful and I just can't pull it off on my own. I have such an immense wave of emotions surrounding life right now but mostly anger and mourning. So in the midst of my internet-less life that seems to be in this hazy-limbo between homes and worlds... I'm starting this new blog. Mostly because the old blog www.fightautism.webs.com just doesn't make sense any more. I'm trying to decide if a diagnosis of Rett means that we beat autism. Chuckle.
Subscribe to:
Posts (Atom)