Friday, December 17, 2010

We have progress!



















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

Goodbye zonegran, hello lamictal and dilantin

October and November have been very rocky months in our household with regard to seizures. Beginning October 1st, we had not had more than 4 or 5 days in a row seizure-free. We had a 4-day hospital stay a few weeks ago and another last weekend. In between, there was an ambulance ride and visit to the local hospital because she had a cluster at daycare. Peppered throughout that was a lot of at-home seizure control and administration of Diastat to break clusters. Greg and I have been alternating and working from home whenever possible to watch her. We are on our 6th medication now. Trileptal, Keppra, Clonopin, Zonegran, and now Dilantin and Lamictal. It's difficult to remain hopeful that we will find a way to control these seizures when despite our best efforts, they have become more frequent. We are currently building up a new drug in her system called Lamictal. It's crutial that Lamictal be built up very slowly in the body, over 2 months or so. We were told that Lamictal is a really good drug. There are few side effects, but there is one and its a bad one - a rash to look out for that is very rare, but can be fatal. So we are visually scouring Meredith day and night for any signs of rash, since we're told that if you are going to get it, it's likely that it will present within the first few weeks. So far, so good - no rash : ) We will use Dilantin as a bridge drug until we get the Lamictal up to speed. Dilantin seems to work better than anything else we've tried. She had a seizure on Monday of this week, but no cluster. Just one random, short seizure - this is very rare for Meredith. Usually, if she has one, we can be sure she'll have many more. Dilantin is an an older drug with undesirable side effects if used long term (think; hair), so the doctors do not recommend using it for any length of time. But so far, she's had fewest seizures while on this drug, so we are very happy for that. And since she should only be on it for a few months, the yucky side effects shouldn't come into play.
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

Another trip to the ER

I think we are becoming regulars at the Children's Hospital Emergency Room. It's Sunday night and Meredith and I are still in the hospital after being admitted on Friday afternoon. We will stay tonight and it is likely we will be going home tomorrow after some testing. Last week, Meredith was having more breakthrough seizures and we were treating with Diastat as usual. We had noticed that the last few times we used Diastat it was taking longer and longer to "kick in," up to 60 minutes. Well, by Friday when she had another cluster around 12pm, I gave the Diastat and it never really kicked in. We headed off to the ER. When we got there, they gave her a booster dose of Keppra, and between that and the Diastat that was already in her system, she stopped by about 4pm. We thought we were in the clear, but unfortunately, they started up again around 9pm. She was seizing approximately every 15 minutes until about 3am. They treated with more booster shots of Keppra, Clonopin and Diastat - nothing was working. Meredith had 3 pretty bad "de-sats" (they would happen right after a seizure) where she stops breathing, her oxygen level drops way down and she needs the oxygen mask/bag thing to start again. Finally, around 3am they gave her Dilantin which WORKED. The seizures stopped and she's been, knock on wood, seizure-free since. Meredith had another Video EEG which took place overnight last night. It doesn't appear that this provided us any new information based on preliminary results, but we'll hear the full report tomorrow. She's had 3 other EEG's. The good thing about these trips to the ER/hospital is we end up consulting with different Neuro's and getting their take on Meredith's situation. They are all quite curious about her undiagnosed condition and Greg jokes that they all want to "be the hero" who cracks the case! This Neuro felt there were a few areas we could do further testing for metabolic disorders so we are moving forward with that today and tomorrow via blood and urine tests. We are looking at Creatine and Amino Acids. Meredith will also be getting a skin biopsy and another eye exam by one of the Opthamologists here at Children's Hospital. This Neuro felt that the right kind of eye exam can provide valuable clues that point toward a specific diagnosis. I'm thrilled to investigate a few more areas since our understanding was that there was really no more testing to do. I keep telling myself that each of these crises have us inching toward what will end up being the best treatment plan for Meredith or possibly even a diagnosis someday. I'm not hung up on getting a diagnosis anymore. In fact at this point, I'd be surprised if we stumbled across one. But if we did, it's just that much more information. So we are coming out of this crisis with a new drug since it appears the Keppra's not quite cutting it. Meredith will remain on her Keppra and we are adding Zonegran to the party. She will also stay on this Dilantin for about a week. It's working to control the seizures, but we are told this is NOT a drug you want to be on long term due to side effects. It's an older drug. So this week should give us a good healthy window of time where we can get Meredith up and running on this new Zonegran. I'm anxious to get out of the hospital, but I feel nice and safe here. The hardest part is Greg is in London for the week for work, but Mer and I have had lots of visitors to keep us company. So Halloween 2010 was a bit of a bust for us, but we are determined to make sure Wonder Woman get her time to shine. Maybe we'll just celebrate next weekend when Dad's home and everybody's healthy!

Monday, October 4, 2010

Watch me roll

Original footage was about 12 minutes long. She worked really hard for this one!

video

Friday, October 1, 2010

September Update

It's been a little while since I've checked in. Here's what we've been up to the last few weeks. Yay for fall!

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

The stander is here!


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

SHE ROLLED!!!!!!

SHE ROLLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Meredith just rolled from her back onto her belly. Needless to say, we are over the moon!

Friday, July 23, 2010

Little house and a GREAT day


















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

2 year checkup

This morning Meredith saw the pediatrician for her 2 year check-up. She weighed in at 22lb 10 oz (4th percentile), was 31.7 inches long (6th percentile) and her head measured 42cm (not on the chart, but in line with her own growth curve). We updated her on Meredith's overall development: Meredith has shown improved eye contact and tracking, much more arm usage and reaching/grabbing, she seems more engaged and watches more of what's going on around her. She is still not rolling or sitting independently, but is getting stronger, kicking around a lot more and seems to be taking notice of her feet. She does not mimic any behavior yet, but we thought we might have seen a wave the other day. We've been working really hard on that one : ) And she's still working on self-feeding. If I wrap her hand around a small piece of food, she'll (sometimes) try to bring it to her mouth. She still really struggles with coordination, but seems to be making small gains there too. Dr. Gifford was mildly concerned about Meredith's weight. She is proportionate, but quite small. The past few months, her weight has gone up a little, then down a little, but she has only gained one pound in a year. Dr. Gifford thought that since she is moving around a bit more and she lacks a lot of muscle, this could explain it. She'd like us to come back in 8 weeks for a weight check and talk then about going to see a Nutritionist. She wants to make sure Meredith is getting all the nutrition she needs for development. We are not too concerned since she eats wonderfully and a wide range of nutritious foods. And she's far from scrawny! But I guess seeing a Nutritionist couldn't hurt. Dr. Gifford was also able to recommend a new Orthopedist for us. I have 2 names to check out and both are supposed to be great. We are looking for a doctor that will be able to offer us a bit more direction regarding equipment as well as keeping an eye on things like Meredith's spine.
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

Vacationing at the Cape

We are happy to report, we finally are on vacation - yaaay!!!! Greg, Meredith and I are at the Cape, where we will stay through July 4th. We are so happy to be here, savoring every minute. We planned to arrive Friday night, but got a bit of a late start due to a sick baby and a minor car accident. No one was hurt, it was very minor, just a real bummer of a way to start a vacation. We were able to get in to see the pediatrician before we left to rule out ear infections or anything else serious. Meredith has been drowsy and a little sick (vomiting), but seems to be on the mend. She's still quite tired, but has not vomited since yesterday. She's snug as a bug, set up in a big girl bed with bed rails attached since she's not a big fan of the pack 'n play. She looks so tiny in there! She's still doing well on her Keppra, though she has had a few "breakthrough" seizures. Since she is sick, we wonder if the seizures she had last weekend were due to this oncoming illness (sickness can often trigger them). A mom on my support board posted a link to a video I found fascinating. Its about an advanced kind of EEG that looks more closely at brain activity resulting in a more accurate diagnosis. The test is called a "Digital EEG and Evoked Potentials Assessment" (DEEP). This doctor points out that all these brain disorders are diagnosed without ever actually looking at the brain. An MRI will give you a picture of the physical structure and an traditional EEG will measure activity in one part of the brain, but there is no standard test that goes further. She compares this to diagnosing a heart issue without ever looking at the heart - makes sense. I emailed our neuro to see if this test is available at Children's Hospital. I thought the video was really interesting, if you would like to see, here is the link:

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

Birthday Smooch

Meredith gets a generous birthday smooch from cousin Ellie...


video

Meredith turns 2!

Yesterday, we celebrated Meredith's second birthday at our house with family. We had a wonderful day and even though Meredith had been so drowsy all weekend, she managed to stay awake through most of the party! Here are a few pictures : )


















Thursday, June 3, 2010

School pictures are in!

I have absolutely no idea how they managed to get 8 babies to look at the camera at the same time - amazing! They came up with a clever solution for Meredith's "park scene" - she's sitting in a dressed up Bumbo.







Wednesday, May 26, 2010

Switching to Keppra

Greg spoke with Dr. Fayad yesterday via phone where it was decided that the best course of action is to switch Meredith's medication to Keppra. Keppra is a similar medicine that also has few side effects, though the one most often noted is an increase in irritability. Hopefully Meredith will not experience this, but if she does, supposedly a dose of vitamin B6 helps combat the issue. So we spend this week tapering off Trileptal and onto Keppra. So far it has gone smoothly and she's taking to it well. Trileptal is really good for some kinds of seizures (the kind that showed up on her EEG), but can actually make other kinds worse. We wonder if the trileptal was making things worse for her since she never had clusters of that many seizures pre-trileptal. Cross your fingers for better results with Keppra!

Monday, May 24, 2010

35

We had another long weekend, but all is good now. On Thursday, Meredith's seizures didn't stop so when I got home from work, we decided to go to the hospital. Greg and I are getting good at this routine and knew to go straight to Children's and bypass Milford Hospital. We checked into the ER and Meredith was hooked up for monitoring. They tried several medications with no success to get the seizures to stop. They continued until 7am the next day resulting in a total count of 35 seizures. She would seize every time she woke up and then pretty much pass right out again. It was taking such a toll on her little body, you could see how depleted she was. Finally, something they gave her worked and she did stop. The last one she had was 7am Friday morning and she has been seizure-free since. Once they stopped, she was happy and smiling almost immediately, almost manic and hyper. She was awake all day and took no naps. Greg stayed with her that night at the hospital since I had done the night before (they only let one parent stay) and he said she was awake ALL night. Doing her little yelps and laughs all through the night. What is she laughing at!? He slept snug as a bug on a windowsill hospital bed (joke) and also logged in zero hours of sleep. The next day, she continued to not nap and also continued to not seize - we were thrilled. They told us we could take her home and we were out of the hospital around 3pm. She is on her regular Trileptal and they are supplementing with another anti-seizure med called Keppra. So right now she is on two. We go see the Neurologist soon to discuss the best treatment going forward, but for the time being, she will remain on the two.
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

ABM

I knew I shouldn't have put that into writing. The seizures are back - she's had 3 so far today and its only 9:30am. I'm home with Meredith for the morning and Greg will be home with her in the afternoon while I go to work for a few hours. She's doing ok, but pretty groggy and sleepy. The only thing that was different this time is about 30 seconds prior to the seizure, she screamed out of the blue. It was literally like she had seen a ghost. Very strange. I have read about people having what they call an "aura" before they have a seizure. Its like the bodies way of telling you you are going to have a seizure. Some people hear a certain sound (like ringing in the ears), or have muscle contractions, or smell a certain smell, heart racing - all kinds of strange things. I wondered if that's what she experienced? Meanwhile, we have been researching some new things. I stumbled across the work of a woman named Anat Baniel that I'm blown away by. She developed a rogue method of physical therapy called, not surprisingly, The Anat Baniel Method (ABM). It's her own take on an approach called Feldenkrais. For most children, the brain signals the body to move and lots of this developmental progress happens spontaneously. For many special needs children, this is not the case. ABM explores how special needs children need to be taught differently. The jist of ABM is you use the body to teach the brain instead of the other way around. The therapy involves lots of movement, quick movements, that help the brain form new "connections." There are lots of videos online and I'm intrigued. There are not many practicioners in MA that teach it, but I found a few and have placed a few calls just to get info. Now how to convince Greg that we need more therapy in our lives, haha : )

Tuesday, May 18, 2010

19 days

It's been a couple weeks since I've posted here, which for us is actually a good thing as there is not too much to report! Meredith has not had any seizures in 19 days, which is awesome, awesome, awesome. She seems to be doing well on her new dose - so far, so good. I took a much needed week off work in early May and just stayed home. It actually felt like a nice long break. We enjoyed all the sunny weather, spent lots of time outside and planted our vegetable garden. Hopefully in a month or two, we'll have some yummy snap peas, cucumber, cantaloupe, lettuce, basil and tomatoes right from our own garden. And blueberries too. We are still working on getting Meredith's stander but are trying to iron out a little insurance wrinkle before we can move forward. We also applied for MassHealth, CommonHealth for Meredith which is supplemental insurance for children with disabilities. It takes about a month to hear if she got approved for coverage or not, so cross your fingers for us - they would cover things like the stander : ) Yesterday, Meredith had picture day at school and they said she did great. And today is class photo day. I'll post one here when I get them so you can see!

Wednesday, April 28, 2010

More seizures

Unfortunately, our 12 day streak with no seizures came to an end this afternoon. Today Meredith had 4 seizures. All of them similar to her other recent seizures, about 2 minutes long each. The good thing is she was not at daycare, she was home with Greg who had taken a vacation day today. We are discouraged, but not too surprised. We emailed the Neuro and he'd like to increase her dose of Trileptal again. In the meantime, Greg and Meredith had an interesting appointment with the Geneticist today. Dr. Harris and Greg talked about the introduction of seizures and whether or not this points toward any new syndromes. The doctor came up with a list of 22 potential syndromes that fit her revised list of symptoms. Then they cross-referenced all of them with what she has already been tested for and came up with.... ZERO new syndromes to test for. She has already been tested and cleared for every single one of them. Our little girl is truly a medical mystery. In fact, the geneticist asked if we might be interested in having her take part in a medical study that the Chief Geneticist is conducting on Microcephaly (small head measurement). This doctor felt that the Microcephaly alone could explain a large part of what's happening. But as we are accustomed to now hearing, no one knows. Little is known about Microcephaly and its prognosis. Especially in Meredith's case, since it does not appear to be associated with another syndrome or illness, as it often is. Her head has continued to grow on it's own curve, but she is still extremely delayed. It's hard to accept that we may never get any answers. But I get the feeling that over time, finding that "answer" becomes less important. Having an answer really doesn't change anything about this situation. But the wondering is very difficult. It's hard to constantly wonder - why did this happen? Was it something I did when I was pregnant? Is it genetic? Was it a fluke? Were we just chosen to be Meredith's parents because she needs us? Would it happen again if we had another child? There is a lot of guilt and a lot of fear associated with not knowing. The list of what if's and why's is endless. But that is a challenge for Greg and I, not Meredith. Our parenting experience is absolutely nothing like we had imagined and it is truly unique. We will learn to adapt and over time stop wondering why, and learn to just accept and appreciate what is. Meredith is happy. She doesn't know she's different from other children. So while we still have no answers, we are feeling at peace with this whole genetic testing process. We feel obligated to go to extremes to find any scrap of information that may help her, but in the end, we are actually comforted by not having a label for her condition. As my dad so simply put, she is who she is : )

Wednesday, April 7, 2010

Visit from Uncle John

Last weekend was one we had been looking forward to for quite some time because Uncle John was in town from San Francisco! It was so nice to have him home. We had lots of fun hanging out and we got to meet John's girlfriend Jackie and her son Graham. We quickly fell in love with them both and made sure the kids got in lots of quality time. Graham is absolutely adorable and I can't wait to see him again. His interest in feet and Meredith's interest in hands helped them hit it off right away : ) There was beautiful weather all weekend and after a brunch at our place on Easter Sunday, we went to the park and played with the kids for a while until it was time to send John, Jackie and Graham off... A great weekend.

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

Seizure

I can't say this weekend has been our best, but some good has definitely come out of the very stressful couple of days we've had. Thursday night we had quite a scare when I went in to check Meredith. Around midnight, I heard her crying so I went in and picked her up for a hug. Shortly after, she started twitching. It started on the right side of her body and then spread to the left. It got more severe as it continued. She was breathing and semi-alert. In the car on the way to the ER, Meredith stopped seizing - it lasted 10 minutes start to finish. When we got to the ER, they drew some blood, put in an IV and catheter (poor thing did NOT like that part). Urine and blood tests were normal. Shortly after we got to the ER, Meredith started vomiting and losing some color. This is when they decided we really needed to be at Children's for more intensive monitoring. So off we went, Meredith and I in the ambulance and Greg following closely behind to Children's Hospital. Meredith was seizing again when we arrived at around 2am. The staff was able to witness this one and gave her Ativan to stop the seizure. She was stable for a few hours and it appeared that she was taking a turn for the better. Unfortunately, she was not as stable as she appeared and over the next couple hours, she had 4 instances where she was unable to breathe on her own. The staff needed to use the "bag" to get her breathing again. It's a little mask and a balloon-like bag they use to puff air into her lungs. I can easily say, we have never been so scared in all our lives. We stood there feeling helpless and watched the doctors and nurses try to get our baby breathing again and each time, they did. We were informed later that the drug Ativan can cause respitory difficulties in some children. We met with several doctors and a neurologist. They thought we should get her hooked up to an EEG immediately to try to capture a seizure on the machine. If they could capture just one, it would provide valuable information on what exactly is going on and how to go about treating it. While waiting for the EEG people to get to our room, which felt like an eternity, they also did an EKG and chest X-Ray. They did finally get there around 9am and after the 40 minute process of attaching all the leads for the EEG, we were ready to roll. Soon after being hooked up, Meredith actually did start to round the corner and become more alert. We were thrilled that she was feeling better, but nervous that we were losing our window of opportunity to catch one of these seizures on the EEG. We were instructed to push a red button if we saw any unusual or seizure-like activity. Throughout the 30 hour EEG monitoring, we only pushed the button one time - it was at the very beginning, Meredith was staring off a little funny. We pushed the button, not feeling too hopeful that we actually "caught" something. During the next several hours, Meredith seemed to recover rapidly and a visit from Grandma and Buddah around 2:30 had her smiling and talking and seemed to cheer her up quite a bit. The day was long, but visits from family helped the hours tick by. By the time Grandma and Grandpa Donovan got there at 5ish, she was all smiles and laughs. And both Greg and I got to sneak outside and enjoy some of the fresh air - it was probably the most beautiful day we've had this year! She stayed connected to the EEG all day and overnight. At around 2pm on Saturday, the neuro's came in with some preliminary results and to our good fortune, the one time we pushed that button WAS a seizure. We learned that it was a focal seizure that lasted 90 seconds. Meredith was prescribed an anti-seizure medication, Trileptal, which is designed to work well with this type of seizure and is very well-tolerated. We got to come home Saturday night and we spent Sunday enjoying just being with Meredith on such a warm, beautiful day. We went for a walk, went to the park, played on the swings and soaked in some sun. We actually feel a great sense of relief that we have some information on these seizures and something to treat. And best of all, Meredith was a trooper, has come through it with amazing strength and is home with us and HAPPY! Meredith has been smiley and extremely vocal! She has quite a story to tell I guess : )

Monday, March 8, 2010

Meredith vs angel food cake

Meredith is trying SO hard, and with lots and lots of practice, is slowly learning to self feed. The first couple seconds of this video are where she really shines, haha!

video

Saturday, March 6, 2010

54 Degrees today - yahoo! Played outside at the park

Getting casts made of my feet for AFO's


Getting Fitted for our Stander!

Yesterday morning Greg and I brought Meredith to Children's Hospital to get her fitted for her stander. They drew an outline of her little body on brown paper and then took lots of measurements. Meredith was happy and patient throughout the appointment, which was great because she hadn't been feeling well the last few days thanks to another ear infection - her 5th of the season, ugh. The options they showed us for standers were much simpler models than the one's our PT had shown us. They were compact and transportable, which we liked, but we need to make sure the PT thinks these will be ok for Meredith since they are slightly different. The office agreed to call and talk with Arlene, the PT, to make sure these models will work. But we have the ball rolling! They also took casts of her tiny feet to make the orthotics she will wear while in the stander. We got to pick the pattern we wanted for the AFO's which was actually the hardest part, but after going back and forth for way too long between leopard print and sky, we finally settled on a light blue sky design : ) They said it would be about a month until the stander is ready for us. I cannot wait to see this little girl standing, it's going to be amazing.
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

Making Valentines for friends at school



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 : )

My Valentine's gift from Dad - baby Uggs from Australia!

Saturday, February 20, 2010

24 Hour EEG Results

Tonight we heard back from our Neurologist with Meredith's EEG results. He emailed us "The EEG showed just some slowing, which is not unexpected in a child who has delays in her development. Slowing is indicative of some dysfunction in the brain, but is not associated with seizures or a tendency for seizures." So it's great that Meredith doesn't have a tendency toward seizures! This does confirm that there is some kind of dysfunction in the brain, but we still don't know what it is or why. We pretty much knew there was an issue in her brain because of her developmental delays, we just hadn't seen it confirmed in any actual medical test yet. He said there was no further testing recommended at this time.
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

The first time I stumbled across this, it was posted by someone from the Delayed Darlings online group where I am a member. It really hit home and I thought it was beautiful. So I'd like to share it with you!

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

Our visit with the Orthopedic Surgeon

This morning Meredith and I headed into Waltham to see the Orthopedic Surgeon to talk about getting her a Supine Stander. It was a pretty quick appointment and in true Meredith fashion, she slept through the whole thing. He examined her body and hips and did a lot of bending and maneuvering limbs and said "well, if you are wondering if she has any orthopedic abnormalities - she has none!" More good news. He also checked her spine since low tone kids are at risk for scoliosis. Thanks to Meredith's hard work in tummy time boot camp, I am happy to report she has NO curvature of the spine - way to go Mer! He said to hold off on ankle braces for now but to get her a pair of sturdy shoes to wear in the stander - he actually recommended work boots. Anyone know where I can pick up some infant work boots?! Haha. He said she's doing a good job building back and trunk strength on her own and that a back brace would not benefit her since we want her muscles to continue to do the work to build her strength. He gave me a prescription for the stander and we made an appointment on March 5th to get her fitted for it. Insurance will cover 80% which is great. There is another little boy at daycare who also uses a stander so I got to see the one they have at KinderCare today. It is really cool, but GIANT. You can't even fit it in a car so his parents leave it there. I'm hoping we can get a bit more of a sleek model : ) I was told that his is quite old and that they are smaller now, hopefully that is the case!

Sunday, February 7, 2010


Happy Superbowl Sunday!

It’s Sunday, February 7th - Happy Superbowl Sunday! Go..... whatever teams are playing!
While Greg is away in Sydney, Australia for work, Meredith and I have kept busy this weekend. We visited good friends 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!