Friday, December 17, 2010
We are VERY happy to report that we have made some progress over the past month controlling Meredith's seizures. Meredith is doing beautifully on her new cocktail and has only had a handful of seizures, all of them associated with illness. She has had only 1 cluster and the rest were singles - which is very unusual for her. Prior to this medicine, if she had one seizure, we could almost guarantee that there would be several more right behind it. We are so happy that we seem to have made a bit of headway since we were starting to feel really discouraged that none of the medications we had tried were working. We think we're on to something!
We have pulled Meredith from daycare and now have her home with us. We found an awesome girl named Katie who is studying for her graduate degree in Severe and Profound Special Needs and she also has experience with children with seizure disorders. So far, she's has been amazing and we are loving coming home to a baby that's already been fed and we can just play until bedtime. Aaaaahhhh....
Meredith has been making some really great strides with development too. She seems notably stronger and has been doing a new maneuver when you hold her where she straightens her legs and arches her back, like she wants to get down. We still have a lot of work to do in the coordination department, but she is showing a real desire to get moving! She is making more deliberate movements with her hands and really playing with toys more. Eye contact has also improved some and over the past week, she has been exceptionally giggly and full of smiles. She must be excited for Christmas!
Next week with meet with our Early Intervention Coordinator and Paula from ECDC (in Frankin), where Meredith will be attending school. It seems impossible that we are already discussing school, but it's likely Meredith will start a program in the Summer. I'm told ECDC will determine how many days/hours of school Meredith qualifies for based on her developmental needs. We hear really wonderful things about ECDC and are excited to learn more. We will need to transition all her therapies to the school system since the day Meredith turns 3, all her Early Intervention services stop. It's hard to imagine our lives without the Early Intervention team at this point. They have been a major part of our support network and provided such great guidance in a whole ton of areas.
The other very exciting thing that happens next week is we leave for San Francisco - yay!!!!! This year, we will be spending Christmas on the west coast. We are very excited to enjoy some warmer weather and spend some quality time with Uncle Matt, Uncle John and the gang.
Happy Holidays to everybody from Meredith and Greg & Laura too!!!!
Thursday, November 18, 2010
Monday we have an appointment at Children's Hospital to discuss the Ketogenic diet. They have a Keto Clinic there where we will meet with a nutritionist to discuss this diet as a future possibility. If you are interested in reading a neat article on this diet or have never heard of it, click here. It has helped many children who's seizures fall into the "difficult to manage" category and is really interesting. Science does not know why exactly it works. I am a big believer in the link between nutrition and health and we feel that if we are still nowhere in a few months trying to control these seizures with meds, we will most likely give this a shot.
In the meantime, we are busy interviewing people with special needs experience to watch Meredith in our home a couple days a week, and will most likely be pulling her out of daycare. We feel her condition has become too difficult to manage in a setting like daycare where they have to call 911 if she has one seizure. Every second of the day I'm fearing the call saying she had one and they called the EMT's. Once they call the EMT's, its an ambulance ride, an ER visit, blood draws, cathater, and too much poking at our girl. At home, we would just make a note of the time and duration and watch for more. So while it breaks our hearts to take her out of there, we feel it's time. She needs a bit more individualized care until these seizures are in a better place. This way, she'll be home and comfortable and we won't have to scream out of work at the drop of a hat if she has one. Also, we think she may get sick less frequently being at home which is important since illness triggers seizures for her. Surprisingly, we have gotten many responses to an ad I posted looking for people with experience in special needs AND seizure disorders. So this week and next, Greg and I will meet with as many people as possible to try to find the right fit. Once Meredith turns 3 in June, she'll be in the school system and that will simplify things a bit for us - we think/hope anyways!!! Despite our rocky road the last few months, this past week has been relatively quiet. And as long as I make it another hour and a half without a call from daycare, we will have successfully completed a whole week at daycare with no emergencies - yahoo!!!! Maybe this Dilantin is working....
Sunday, October 31, 2010
Monday, October 4, 2010
Friday, October 1, 2010
Crazy Hair Update: Meredith got her first haircut last night! We went to Delarria Salon where my mom and I both get our hair cut by Traci, who we love. She had offered to cut Meredith's hair for us, so we scheduled for last night, and off we went. It took about 5 minutes! Greg came too, so he could watch and take pictures. We went back and forth on whether or not to cut bangs and in the end we did decide to get them. Meredith got to wear a grownup cape and everything. It was very cute. Check out her new do' in the picture of her playing in the water basin in her stander.
Stander Update: So we've had the stander now for about a month. It has quickly become one of our favorite things, and Meredith really comes to life in it. It's great for her hips, legs and learning to bear weight on her feet, but we have seen the most progress in fine motor and coordination. She is so supported through her torso and lower body that her arms are freed up to play! She's now making deliberate movements with her hands and will reach for an object. She will entertain herself for quite a while with a few toys on her tray. We try for two 40 minute sessions a day depending on how she's feeling. It's working out well transporting to and from daycare. We bring it in on Monday morning and home Thursday night. They are great about getting her in it, and the other kids are very curious and love to bring her toys when she's in it.
Seizure update: We are still doing our best to manage these seizures with medication. She has been having a handful every few weeks, usually in coordination with an illness. She actually had one yesterday morning and a few today, but is now resting and doing ok. She has conjunctivitis right now, threw up this morning and has a bit of a cold, so maybe that explains it. She had a great streak of happy, seizure-free weeks leading up to this, so we were so very grateful for those. Any day that is seizure-free in our household is a GOOD DAY! This cycle seems to repeat itself every few weeks. Our hope is that in the future, she'll tolerate illness without having seizures as her immune system gets stronger.
Rolling update: On a happier note, Meredith has now rolled 8 times! She usually rolls to the right, but this last one was to the left AND Greg got to see it! - he had missed the others. Yahoo! It's definitely a deliberate movement which is so great to see : )
Saturday, August 28, 2010
After much anticipation, Meredith's stander finally arrived yesterday afternoon! She looks great in it. Her legs are straight and she really enjoys being upright. We are so excited to finally have this piece of equipment for her, it should give her a whole new perspective on the world. We'll keep it at daycare during the week and then bring it home with us for the weekends. At daycare it will be great for socialization too. She'll be up at eye level with the other children. We also saw a new doctor yesterday, a Pediatric Physiatrist. I had never heard of a Physiatrist before - they work with lots of special needs children and a whole range of people with rehabilatation needs. Since we were looking for some guidance with braces, orthotics, equipment, etc., this was a great fit. We liked the doctor a lot and left with some good advice and a new toy to play with - knee immobilizers! They keep Meredith's legs straight so we should be able to hold her around the torso and have her put weight on her feet when not in the stander. They are pretty neat and I can't wait to try them. Today won't be the day though, because Meredith has been sick. She vomited last night and this morning and had a couple seizures today as a result of the sickness. We gave her Diastat to stop the seizures about an hour ago and so far, so good. We have used the Diastat 3 other times, each with success. We are so thankful to have a line of defense we can use against these seizures at home instead of having to go to the ER each time. We are averaging approximately one cluster of seizures per month at this point, and usually she has them when an illness is around the corner. The last several months we have been lucky and she's had them on weekends or early enough in the morning so we know ahead of time not to send her to daycare. All in all, we consider these seizures moderately controlled. And in the world of seizures, that's pretty good!
Friday, July 30, 2010
Friday, July 23, 2010
Meredith had an amazing day today! This morning Linda Collins from Perkins School came by to work with Meredith. She has given us so many good ideas on ways to grab and keep Meredith's visual attention. Today she brought by a "little house" she called it, for Meredith to play in. Last time I saw Linda, she described it to me, and I thought it sounded really odd. But after seeing how well Meredith responded to it today, I can't say enough about it! Linda explained that children often like to play in comfy small spaces (tents, cardboard boxes, forts) because they feel safe. So this little house is an acrylic cube that we set over her and it's got holes drilled all around so you can hang whatever toys you want. It blocks out extra visual and auditory stimulation in the room, making it easier to the child to process the sights, sounds and movement of the toys in there. The small space gives the child a sense of spacial awareness and kids like to hear the sound of their own voices in the enclosed space. Linda hooked up all kinds of neat toys in there: a slinky, a whisk with a bell inside it, mylar paper, bells, a duck hanging from a bouncy spring. Meredith responded beautifully to it. She was smiling away, reaching way up high and having a ball. She looked at and played with every single toy in there. Her legs were kicking all around and she was very active and happy. Our day continued on a high note with Meredith ALMOST ROLLING OVER. Toward the end of our appointment, Meredith was laying on her back while I talked with Linda and Sue. A few seconds later, I looked over and she had turned fully onto her side and was playing with her new favorite bracelet. She stayed like that and played for a while. I couldn't believe it! She continued to do this all day today going from flat on her back to swinging her legs up and over and getting herself all the way onto her side. We've seen her go from her side to her belly so we know she can do what it takes to get the rest of the way over. We watched her like hawks because we thought today might be the day. It wasn't, but she is so, so close. Linda left the "little house" with us and all the toys she brought over. We will definitely be using this a lot! Very happy day today in the Lewis household : )
Thursday, July 22, 2010
Last week we saw the Developmental Pediatrician who thought we could be more aggressive with Speech Therapy. Currently she gets ST once a month. The ST looks at how she takes a bottle, how she moves food around her mouth, etc. because these are all the muscles eventually used in speech. She still makes mostly vowel vocalizations, but the Developmental Peditrician feels Meredith could benefit from learning some very basic sign language or other modes of communication. Tomorrow we talk to the Early Intervention team about the possibility of getting more Speech Therapy. She got 2 shots today and she really tried to hold back the tears. Huge pouts after shot number 1, but shot number 2 put her over the edge into full blown crying. She was a champ though and recovered quickly. Next Pedi appointment is not until age 3!
Sunday, June 27, 2010
Our other big news is that we have decided to accept the invitation from Children's Hospital for Meredith to be part of a medical study on Microcephaly. Meredith, Greg and I will each give a blood sample, then the study begins. The study has been going on for 8 years and could continue for another 10. They will only contact us if they come across new concrete findings. The study includes families from across the globe with specific interest placed upon families in the developing world. Since many of these families are larger, including many more children than a "typical" US family, the familial gene pools are greater, providing more scientific data to observe. Hopefully our contribution to the study will one day provide more information for children like Meredith.
Sunday, June 13, 2010
Thursday, June 3, 2010
Wednesday, May 26, 2010
Monday, May 24, 2010
Today, Meredith is back at daycare and I think she was happy to see her buddies again. They are playing "Minute To Win It" this week. They give each child a magazine and whoever can rip out the most pages in one minute wins! I think Meredith got smoked by Maisie, but I'm sure she put up a good fight : ) So cute, I love KinderCare. I talked with them about our weekend and they were supportive as usual. I couldn't dream up a better daycare scenario, I absolutely love this organization. So our count begins again and we are on day 4 with no seizures.
Thursday, May 20, 2010
Tuesday, May 18, 2010
Wednesday, April 28, 2010
Thursday, April 8, 2010
Wednesday, April 7, 2010
This week we also made progress on the stander front. We were able to get our hands on a loaner stander which we will leave at daycare and we will still move forward with purchasing one that we can use at home. This way we won't need to transport it back and forth. Grandpa was nice enough to swing by the Early Intervention office on Monday and pick up the loaner and deliver it to our house. We learned today while trying to position her in it, that it's a tiny bit big for her. But in a couple months and another inch or so, she should be fine - so we'll definitely be hanging onto the loaner anyways! We had an appointment this morning with a guy from a medical supply company who showed us several great options for supine standers. Next step is an appointment with someone who can actually show us one of these specific models and make sure it would work for Meredith. Our PT is so optimistic about getting Meredith in the standing position saying it is beneficial for a variety of developmental reasons: improved sociability, muscle tone, bone density, joint developments, deepening hip sockets, and even helping with digestion. All good stuff! Meredith had a really sleepy day today, which was fine since she had a couple MAJORLY choppy sleeps the last 2 nights. Little munchkin took a short snooze from 9am-4pm. What?! When I picked her up from daycare tonight, they said she just woke up. Little Rip Van Winkle slept right through the nicest day of the year - it was 86° today!
Sunday, March 21, 2010
Monday, March 8, 2010
Saturday, March 6, 2010
After Children's, we were off to the pediatrician's office to check in on why her ear infection wasn't getting any better. The doctor confirmed that the antibiotic she had been on just wasn't working. They gave her a shot in the leg and already, she's well on her way to recovery. She was much, much happier today and back to her usual smiley self. It was so warm out, we went for a nice walk and played for a while on the swings at the park. So nice to see her happy again!
Saturday, February 27, 2010
Meredith and Mom decorated cupcakes and made Valentine's to take to the V-day party at school. As you can see, Meredith was extremely interested in cupcake decorating - and only slightly more interested in decorating bubbles with glitter : )
Saturday, February 20, 2010
It's so nice to have this test out of the way and to have heard these results today - the waiting is the hardest part. Meredith wasn't too phased by the news as she was very happy and smiley ALL day today despite a nasty cough - I can't wait for Spring! All in all, today was a very good day : )
Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, February 11, 2010
Sunday, February 7, 2010
While Greg is away in Sydney, Australia for work, Meredith and I have kept busy this weekend. We visited Karrie and Colleen in Marshfield where Meredith LOVED chirping along with the exotic bird. Saturday, we went to a beautiful memorial to celebrate the life of my Mom's good friend Judy who will be missed by so many. Meredith was a social butterfly smiling and laughing all day. Last week was packed with appointments at various "ologists." We saw our Developmental Pediatrician who we LOVE. She is amazing. She put us at peace with not having a diagnosis and encouraged us to seek out other local parents who have special needs children. She felt that finding other parents who can relate is really important.
Meredith had a 24 hour EEG on Monday into Tuesday. She has had 2 other EEG’s that both came back normal. Since we now have confirmation that she has had at least one seizure, the Neuro thought it was a good idea to do the 24 hour one. Sometimes kids can be having seizures at night and you wouldn’t even know it (a condition called ESES) and this directly impacts development. The good thing is it can be treated. We are not that hopeful that we will find any new developments with this test, but you never know. Meredith was a champ. She wasn’t happy about getting all the leads attached to her head, but once that was done, she did great. She and Dad picked out a special backpack that would house all her wires and a monitor. So she was very interested in her cheetah backpack that followed her around and we got to keep it after : ) We should hear results in a week or so.
This week we go back to see the Orthopedic surgeon to talk about getting Meredith a supine stander, ankle braces (AFO’s)to wear while in the stander, and possibly some kind of back brace/support. Stay tuned! Meredith's PT is very optimistic that we can get her standing. So we are all excited to see that!