tag:blogger.com,1999:blog-77681456839297619122012-01-05T20:46:41.804-05:00Developmental delays and our familyJasonnoreply@blogger.comBlogger1031100tag:blogger.com,1999:blog-7768145683929761912.post-83238581950518898362011-12-31T18:09:00.002-05:002011-12-31T18:59:45.474-05:00

I remember the first movie I saw (at least I think I do), it was "Annie." I remember the first movie that Alison saw was "Curious George." I am sure Jason would remember his first movie as well if I asked him.I also have fond memories of the theater. I was in theater camp as a teenager and then worked as an usher and backstage for the theater near where I grew up. When I was in middle school and

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-53385343422755429282011-09-15T12:41:00.002-04:002011-09-15T12:50:02.532-04:00

When I first got accepted to Drexel University and got awarded a partial academic scholarship as well, I really thought that at any day "they" would come and take it away from me. I figured that at some point people would realize that they made a mistake, gave the award to the wrong person, by no means did I deserve it.Fast forward some (okay many) number of years and this is the same way I feel

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-84257195995492959272011-07-17T00:02:00.003-04:002011-09-06T23:17:35.046-04:00

Earlier tonight, Alison asked me, "When Daniel is older, will he still have special needs?""He may," I said. "We hope that he'll keep getting better, but he may he still have special needs.""I don't want him to have special needs as an adult," said Alison.Now my mind goes into fast-forward. Does Alison envision a day when she may be tapped to be responsible for Daniel's well-being? Will adult

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-91089558539872084472011-07-11T19:03:00.002-04:002011-07-11T19:28:07.560-04:00

We went on a trip this weekend. A sort of mini vacation. We took a long train ride to New York City and stayed for 3 nights in a hotel in the city. It is a trip we have been anticipating for a long time. We managed to do a lot in a 4 day weekend including see a Broadway show, going to the top on the Empire State Building and going to Times Square. All and all it was a great (but short) trip.

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-47671156418503345832011-06-10T13:56:00.002-04:002011-06-10T14:14:02.680-04:00

When I first became a mother I felt in over my head. I imagine that I am not the only mother to feel that way with a newborn. I wasn't sure how to care for this precious little life that was given to me. I learned, but slowly and I am in no way an expert at this parenting thing. By the time Daniel came, I can't say I was any more experienced with my 3 1/2 year old. I did not have the patience,

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-2620837500358045452011-04-10T11:51:00.003-04:002011-04-10T12:17:50.058-04:00

This parenting thing is not for the lighthearted. I am not complaining or anything. I love both of my children dearly and would never once want anything different than to be a mom to both of them, but let me tell you, it is not easy. We have one special needs child, which no doubt comes with challenges and obstacles almost daily, but some days those challenges can be even more difficult to deal

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-75305534758259273922011-03-14T20:07:00.002-04:002011-03-14T20:13:44.391-04:00

I entered a writing contest a while ago. The theme was, "I never thought I'd..." I did not win the contest or come anywhere near winning but I was proud of myself for writing and entering the contest. Thought I would share as I never thought I would be a good enough mom for Daniel:When my daughter was born she was born ready to go. She was not going to let a cord snug around her neck slow her

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-61150703620474865452011-02-11T10:30:00.004-05:002011-02-27T11:34:40.062-05:00

When my daughter gets sick, I am worried for her and feel bad for her and I am probably a little overprotective. She hardly ever gets sick and so when she is not herself, she is very much not herself and it is concerning. There is one thing though that keeps me from becoming beside myself when she is sick--she can tell me what is wrong. Daniel was sick yesterday. He vomited all day and was not

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-12348219269393712662010-12-22T12:25:00.005-05:002010-12-24T17:04:34.846-05:00

When I was a kid, the poem 'Whatif' by Shel Silverstein was one of my favorites. I felt connected to it in a lot of ways. Today I feel as though I could write a different version: Last night while I lay in bed,I couldn't sleep because of the Whatifs floating around in my head.Whatif you were able to walk?Whatif you were able to talk and have a conversation,Whatif you were normal and moved without

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-85832544955685248502010-12-11T19:13:00.002-05:002010-12-11T19:28:09.177-05:00

Daniel has been talking up a storm and is very understandable and is also trying to repeat everything you say. He has his own little dictionary of words that he has accumulated and he tries to say all of the words he knows in one day--sometimes even at one time. He loves singing too and loves it when we sing to him, sometimes it can be the same song sung over and over and over again. He really

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-34769050047852519172010-10-25T19:20:00.003-04:002010-10-25T19:22:48.541-04:00

Though our posts have been infrequent, Daniel continues to make strides. This brief clip from this morning's field trip to the pumpkin patch, provides a great example of what our boy is able to do.

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-47850884719233283512010-09-26T21:19:00.002-04:002010-09-26T21:36:51.025-04:00

Daniel has being doing great! He has adapted to a full day at school really well although he seems to refuse to take the naps that are apart of his preschool curriculum. Ah well, his teacher decided it was best to keep him bust instead. I received a call the other day from his speech therapist who said in one word: "Wow." She was amazed at all the words he is saying now. He will pretty much try

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-54507903719802150002010-08-23T23:33:00.003-04:002010-08-23T23:59:39.308-04:00

Yesterday you turned four years old. It amazes me the little man you are turning into. Although my ultimate wish for you did not come true this year (for you to walk), you are demonstrating so much in other ways. You are becoming quite the talker and will try very hard to repeat just about anything and everything you hear. You got the term happy birthday down, exclaiming to everyone who would

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-28301322314216402952010-07-22T06:20:00.002-04:002010-07-22T06:33:00.466-04:00

I have mentioned before that Daniel loves his big sister and it is also very clear that she loves him. It is difficult to go down that road of what ifs and try to imagine what their relationship would have been like had Daniel been born without disabilities. As hard as it is for us as parents to process, it must be a thousand times harder for his sister to process the whats and whys of Daniel's

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-45015804490038820592010-06-18T14:53:00.004-04:002010-06-18T15:30:00.958-04:00

Daniel has mastered two new words and says both very well. He can now say: 'morning' and 'donut' really pronouncing the 't' sound. It is great to hear him talk. Pretty much anything you say, he will try to repeat it and he will get it right a good amount of the time. We ordered him a walker a week ago, since we have enough money in our flexible spending account and need to use it or we will lose

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-65826389837718988192010-05-30T10:11:00.003-04:002010-05-30T10:53:36.381-04:00

A lot has happened in a small amount of time. We have been on vacation to Disney World, we have had Alison's dance recital, we are winding down with school and oh yes--we bought a house and moved. Crazy. First of all Disney World was great and while Jason may take the opportunity to provide our readers with much more intricate details of characters and rides, I will provide an overview of how

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-89097077169981542752010-03-23T15:28:00.002-04:002010-03-23T15:53:02.966-04:00

We are all still here! It has been busy, of course, but we are here. We have been trying to keep up with day to day work, school and extra activities. For the most part all is well. We are very glad to be out of winter and into spring. It was a looooong winter. At the end of February we had a bit of an unpleasant week and weekend when Daniel got sick. It is difficult to know exactly what is wrong

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-9810418529425467732010-01-19T09:30:00.002-05:002010-01-19T09:45:21.332-05:00

The other day we were driving in the car and asked Alison to give Daniel a snack. Because of his still difficulty with chewing, she knows that she needs to break off small pieces and give it to him in his hand. She is also aware that she needs to have him chew what he has in his mouth before giving him any more. She is only 6 years old. I feel bad for her. Never mind that she doesn't notice

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-50681068896790240672010-01-01T00:23:00.003-05:002010-01-01T00:33:11.447-05:00

I wanted so bad to make a prediction for this new year. I stopped short of coming right out and saying it so as not to jinx myself or especially Daniel. I would love to be able to predict so many things for him. For the new year brings new hope that maybe this year he will walk, maybe this year he will talk, maybe this year we will know better how to care for our son. In so many ways I have

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-72507608496604572302009-12-17T10:17:00.002-05:002009-12-17T10:56:49.569-05:00

I have dreams and I know that Jason does as well as everyone else in my family. I have dreams of Daniel running. It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-7768499786083660522009-11-26T14:36:00.002-05:002009-11-26T14:49:41.098-05:00

I am thankful for so many things this year. First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy! Next, I am so thankful for my children who are both healthy and happy and simply wonderful! I am also very thankful for my wonderful husband who, while being the very best husband a woman

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-5697877313119176932009-11-06T18:47:00.002-05:002009-11-06T19:00:52.736-05:00

Daniel is thoroughly enjoying school. He loves going on the bus and from the daily reports we get, it appears he is almost always smiling and having a great time at school. Really nothing more that a parent could ask for. As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-52919753097254608222009-10-06T13:47:00.004-04:002009-10-06T20:59:53.540-04:00

Each day, Daniel's teacher sends home a note to let us know about his day. Today's note made me grin widely:Daniel had a good day today. He has a sensory group with our therapists and worked on colors and fall leaves. He also visited the library. His favorite time today was by far enjoying lunch with his friends. He laughed and laughed as they shared looks. He also said POPCORN very clearly

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-41312085724965284912009-09-27T15:17:00.000-04:002009-10-06T13:46:54.698-04:00

It has been busy to say the least. The kids have been in school and there are several activities at night as well.Daniel is doing very well in school. We get a daily report that always mentions his smile or good nature and how much he enjoyed the day. He truly LOVES school.His language has been growing every day. He is trying to talk more and more and is learning new words as well. Sometimes he

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-78099853464678322562009-08-19T23:24:00.008-04:002009-08-20T08:43:56.236-04:00

My boy will turn 3 in a few days but still is nowhere near a normal toddler in terms of his vocabulary or language development. Not a problem, though. Daniel manages to get his message across with a few choice infantile utterances. "Bah-bah" for good-bye, for instance... "Car-car" for going in the car...This past Saturday morning, I was loading up the van with a few bags and suitcases for a brief

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-79232150274940740452009-08-03T11:20:00.003-04:002009-08-03T15:20:22.958-04:00

Give me a minute as I need to climb upon my personal soapbox. Oh good, there now here I go. I had the pleasure of listening to one of President Barack Obama's town hall meetings on my satellite radio the other day. I love listening to this guy speak. He clearly makes sense and has nothing but the best intentions for this health care reform. But you know what they say about good intentions right?

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-7424514876328114332009-07-29T20:39:00.004-04:002009-10-09T10:38:58.605-04:00

I recently read a very touching and inspiring book about a mother who have given birth to twins at 23 gestation. She begged to have the doctors leave them be, knowing full well that they would either die or live with very bad complications. She was entirely right but how she dealt with it was entirely different from what she ever expected. If you would like to read it as well the name is "This

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-48571756236933222782009-07-17T16:48:00.002-04:002009-07-17T17:07:34.798-04:00

Daniel's last day of summer school was today and by all accounts he had a great time! He thoroughly enjoyed school and even loved riding on the bus. He came home some days with paint somewhere on his body, but every day with a smile on his face. It was a delight to see. Today, for the last day of summer school, there was a Luau (even though it rained). Daniel and his classmates sat on the

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-47141265390242551542009-07-10T16:28:00.002-04:002009-07-10T17:16:43.588-04:00

Jason won a trip to visit Pixar studios in Emmeryville, CA a while back. While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children. We were mostly concerned about Daniel. It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-75607838609003247742009-06-09T05:40:00.002-04:002009-06-09T05:46:12.099-04:00

Daniel has been movin and shakin for the past few weeks now and it is so fun and exciting to see. He out grew his high chair and with the continued generosity of grandma and papa he got a brand new chair that will grow with him. This chair allows him to sit at the table with us and eat. However, this has become a bit difficult with his reaching for everything in sight. We have had to make sure

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-39975140414109064372009-05-20T03:52:00.002-04:002009-05-20T04:03:45.168-04:00

It has been busy around here for the last few days especially. Daniel is becoming a typical two year old and this has been both exciting and dangerous. Daniel, for a long time, really didn't find much interest in exploring the world around him. He would be perfectly fine sitting still and sort of "playing" with things that were presented to him. But no more! Daniel is now a very inquisitive

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-54377535836979874442009-05-11T00:30:00.002-04:002009-05-11T00:45:59.469-04:00

I have read on other blogs and in some articles, where mothers of special needs children have a much more difficult job. That for some reason we are stronger than a mother of a "normal" child. I have both and I tend to disagree. I think that any mother is a mother of a "special needs" child. What child out there doesn't have "special needs?" In today's world, there is so much that a child needs

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-89756148426083480982009-05-04T13:04:00.002-04:002009-05-04T13:22:11.600-04:00

Today, Lara and I visited the elementary-school classroom where Daniel will attend summer camp for a few weeks and, in the fall, be enrolled as a preschooler.While I had anticipated feeling uneasy about the visit, I actually became very excited by what I saw. We sat in on circle time, where the teacher led the class in songs and reading and used lots of visual aids -- really not much different

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-20446084986422429532009-04-30T02:11:00.003-04:002009-04-30T02:27:02.886-04:00

I know in my heart of hearts that it is unfair to compare Daniel to other children his age. However, when faced this past weekend with two little boys slightly younger than Daniel-walking, talking perfectly normal little boys, I cannot help but to compare. I still go back to the why of it all. Why Daniel? I cannot make sense of it, and I don't think that I ever will. I love Daniel with all my

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-46690349936074195732009-04-02T20:46:00.008-04:002009-04-02T21:12:17.029-04:00

The fact that he can't stand up doesn't stop Daniel from grooving to a reggae beat. We came upon this song, "Banana," on our new favorite TV show, Yo Gabba Gabba. I think everyone should watch it, whether or not you have young kids. My two favorite moments:1:11 -- Danny stops to acknowledge me with a point of the finger, saying "Da-da."1:50 -- Daniel does sign language for banana.By the way,

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-58942340927528154892009-03-22T18:31:00.002-04:002009-03-22T18:44:48.784-04:00

I have tried to explain this to Jason without much success and maybe it is something that can never be explained, I don't know. I have struggled with dealing and thinking of Daniel's condition since before we even knew it had any sort of a name. I love my son. I love him and his sister more than anything. My life is complete with my family and Daniel is a wonderful little boy. The best, I

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-61623148610255840622009-03-12T19:45:00.003-04:002009-03-13T09:06:17.052-04:00

I heard back from the great doctor out in Chicago today, and I will post his summary below in a minute. First though I would like to just update this blog (it has been a while) to describe how Daniel is doing.Daniel still does not crawl or walk however, he is quite mobile. He sort of scoots on his butt to wherever he wants to go. While he still doesn't say many words he does know plenty of signs

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-91548624795996845612009-02-26T01:10:00.003-05:002009-02-26T01:25:10.389-05:00

Daniel and his big sister Alison seem to have the most love between a brother and sister. There really exists no sibling rivalry. Largely due in part because Daniel is not a real threat to Alison. Given the fact that he still does not crawl or walk and mostly still observes her playing (though that is quickly changing). He hasn't challenged her and taken toys from her. Which is good and which is

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-62754387761272845012009-01-28T16:34:00.002-05:002009-01-28T16:47:56.471-05:00

For the past few months, we have been introducing Daniel and ourselves to a new form of communication. We got a sampling of videos from one of his previous therapists and since then we have collected a few of our own. These videos called Signing Times are extraordinary in helping Daniel communicate. He has learned so many signs and uses some to communicate his needs. Alison has also become very

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-89758793772846300972009-01-05T16:19:00.002-05:002009-01-05T17:02:27.489-05:00

A "New Year" to me used to mean promises and hope and new beginning. Did I say used to? I got over that a while ago. Realizing quickly that really the new year was just a change in calendar and what happened the day before was still there the next day even though it was a new year. Toward the end of last year we finally sent out Daniel's MRI to Dr. Dobyns in Chicago. Dr. Dobyns is a professor and

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com3tag:blogger.com,1999:blog-7768145683929761912.post-36601519487559585342008-12-27T03:10:00.002-05:002008-12-27T03:21:40.659-05:00

As this year comes to a close, and the new year fast approaches I am amazed by just how quickly time flies and life goes by. Daniel is sure going strong into the new year. He is making such great strides. Sipping though a straw is getting better and better, eating and chewing is continuing to improve. He is continuing to get strong in his upper and lower body and he just wants to try to do

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-36968944498038145722008-12-05T18:55:00.002-05:002008-12-05T19:19:53.882-05:00

Lately I have started and stopped several posts in my mind. I have titled them and finished some of them, but really have not been able to actually sit down and put them in the computer. Finally as I sit here I have an assortment of posts running around and hence the title of this one. Daniel has recently started the special ed program with the city school. This is a good thing and is the main

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-10106281617253966452008-11-28T16:43:00.003-05:002008-11-28T17:10:57.493-05:00

Last year for Thanksgiving we were in North Carolina visiting with Jason's sister and family. Last year I fell down the stairs and had to spend Thanksgiving in the ICU in a hospital in North Carolina. Away from my family. This year we had every intention of going back to NC and having a do-over of sorts. Unfortunately I got sick (nothing as major as a lacerated spleen). I just did not feel at all

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-176158577793972652008-11-17T05:46:00.003-05:002008-11-18T01:21:24.115-05:00

I came home from work the other day and my mom was sitting on the floor with Daniel and was holding him up. Daniel was wearing his fancy new sneakers and was holding himself up pretty well (he can stand unassisted if he leans against something). My mom was also trying to get Daniel to "walk" and he did a few steps (assisted) quite well. The thing that struck me most about this particular

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-72084330593010135722008-11-06T05:39:00.003-05:002008-11-08T13:23:45.110-05:00

It should be no surprise to our friends and family that we are a liberal family. We are not overly above and beyond in any respect but yes, we certainly were very saddened when our current President won yet again in 2004. We had our heart set on this election. We craved a change that would resonate beyond our existence and with the grace of god we got it! It is not at all that I believe that

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-46581093386027461542008-10-16T23:55:00.002-04:002008-10-17T00:11:54.382-04:00

My head is spinning. Mostly from a constant headache that I seem to have had. It has been a while here since I've expressed my thoughts about what is going on with Daniel. I know it's wrong, but the thought still comes to mind of "Why him?" or "Why us?" I actually e-mailed Jason a while ago and asked him if he ever thought that way now, after a year of knowing what our little boy has. He was

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-67619708845514903502008-10-14T09:46:00.004-04:002008-10-14T10:35:06.056-04:00

Let me just say it right up front: It makes me sick that Sarah Palin is using her Down syndrome-stricken baby in order to gain favor among voters. It's a disgusting display, and I sincerely hope that people see through it.In the chilling scenario where McCain wins the election, I don't believe for a second that Palin would have one ounce of influence in issues related to families of special-needs

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-8283985271611044412008-09-21T21:30:00.003-04:002008-09-21T21:49:57.882-04:00

It was a year ago, not to the day, that we found out the name of what haunts our boy. A year ago that our family was forever changed. I still feel the raw pit in my stomach that aches for what could have been. The diagnosis came after months of not knowing and months of guessing. It was given to us without full knowledge of what it was and how it could and would and can impact a person's life. We

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-53629306610947988502008-09-06T18:50:00.005-04:002008-09-07T10:04:26.728-04:00

My aunt died this week.While she never got to meet Daniel or really Alison for that matter (except when Alison was a month old), she was a big influence in my life.She died of lung cancer and around the same time that she was first diagnosed, we started to realize something wasn't right with Daniel.My aunt worked with adults and children with cerebral palsy and she was very helpful in identifying

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-5327576062328719232008-08-24T22:35:00.004-04:002008-09-03T11:09:08.742-04:00

While Lara and Alison were waiting in line at the register, I was pushing Danny in his stroller through a toy shop yesterday. As we were exiting, a large man bent down to Danny, smiled, reached out his hand and said "Hey buddy, gimme five!" It was immediately clear that the man was mentally retarded, exemplifying the demeanor of a child in the body of an adult. (He himself was grasping a toy in a

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-19635331953881409682008-08-22T12:52:00.004-04:002008-08-22T13:18:38.015-04:00

Two years ago today, Jason and I went to the hospital to have our second child. With no knowledge of whether or not that child would be a boy or a girl, but with the expectation that since we already had a little girl that we would most likely be having another little girl. Not until the nurse mentioned that it could be a boy did we think that we might actually have a boy. At 7:35pm our precious

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-31417194306903985442008-08-15T00:46:00.002-04:002008-08-15T01:01:34.737-04:00

When Alison was just 6 months old, we were living in NC and I got a full time job. We weren't as fortunate as we are now to have my parents nearby to take care of her so we needed to put her in child care. Jason found a place close by that was more like a house than a child care center. It was further from any child care center I had ever seen by also being a Spanish Immersion preschool. Alison

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-66707385213437769832008-08-07T20:17:00.001-04:002008-08-07T20:19:21.555-04:00

I have been thinking about this song for a long time now. It isn't played much but I find it to be something of a song for Daniel:Close your eyes,Have no fear,The monsters gone,He's on the run and your daddy's here,Beautiful,Beautiful, beautiful,Beautiful Boy,Before you go to sleep,Say a little prayer,Every day in every way,It's getting better and better,Beautiful,Beautiful, beautiful,Beautiful

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-32903727398703694452008-07-31T20:20:00.003-04:002008-07-31T20:24:04.913-04:00

From time to time, I will read something that I could not have written better myself. From time to time someone else hits the nail on the head.

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-80493782752596808622008-07-20T20:40:00.002-04:002008-07-20T20:44:59.249-04:00

No it is not a porn video. But yes, that would make a good title for one. It is a food that is something like a cheeto. It can almost melt in your mouth and it is the one food that Daniel can eat and we don't need to worry about him choking on. It is also the one food that we have been trying to get him to use his pincer grip to pick it up and put it in his mouth. Well, today that is just what he

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-20456023705732726102008-07-12T14:02:00.002-04:002008-07-12T14:18:07.074-04:00

It has been a while since we have talked about Daniel's progress and what he is doing these days. I believe that Daniel makes progress everyday and it is possible to see if you just keep your eyes open for it. He is very proficient at getting to a sitting position from laying down. He continues to get up on hands and knees and rock back and forth in a starting position for crawling. Daniel has

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-78503394552243165682008-06-17T20:23:00.003-04:002008-06-26T17:43:24.406-04:00

I used to think that I wanted to know everything about the future. I wanted to know exactly what was going to happen and how and when. No surprises. Faced with an uncertain future, I now question why I want to know such things. How will it make my life different or will it make it any different? I thought that it would be nice to know what is going to happen. To be able to prepare for it, but

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-64916938039497525612008-06-08T16:33:00.002-04:002008-06-08T16:46:11.798-04:00

This past week I took Alison to get her registered for Kindergarten. I am not sure why this was such a hard thing for me. It could be just the realization that she is growing up, that she is not the little toddler she was not too long ago. I am having a hard time with it all. This week I also called about initiating Daniel into the school system too, but in a very different way. He remains in

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-33839554463704560922008-05-20T04:38:00.004-04:002008-05-20T09:48:02.387-04:00

We just got back from Disney World and had a terrific time. I was just looking over the photos from the visit, reliving some of the highlights, and certainly this trip was mostly about Alison. At five years old, the Disney magic is real to her. Ask her, and she'll tell you that she met and spoke with actual Princesses.But the photos also reminded me of the quick thoughts and momentary

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-46242314769783544312008-05-10T14:22:00.002-04:002008-05-10T14:41:33.013-04:00

It is so much fun to watch your children develop a personality. I have loved watching Alison's personality develop over the years. Even when she was born, I could see what kind of person she was going to become. The child did not want to sit still from day one. She wanted things her way or else. Guess what she is like today? Daniel is different from his sister though and it makes for an

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-87654106491845163562008-04-18T06:28:00.002-04:002008-04-18T06:32:39.018-04:00

Last night Daniel got on all fours, for the first time by himself, and rocked back and fourth for a few seconds. Then while he was on his stomach a short while later he was trying to reach his daddy and sister and couldn't quite get to them so he scooted forward a tiny bit. I know it seems very small but to us, it is truly wonderful. We cannot wait to see what he will do next and where he will go

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-9853874027820191812008-04-12T20:30:00.002-04:002008-04-12T20:35:27.892-04:00

I will never stop trying to get the best care in the world for my children.I will never stop believing that my children can go as far as they want to go in life.I will always want better even if they have the best.I will always want to take away their pain and have it be my own.I will always work to make the world better for my children to grow up in.I will never let my children fear life.I will

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-89781294885505843672008-03-27T16:23:00.002-04:002008-03-27T16:41:10.300-04:00

We took Daniel to the eye doctor again today for a follow-up. It was a shorter visit this time which was nice. Daniel was very excited as usual to go in the car and take a trip. He just likes to get out of the house and I really don't think that he cares where he goes. Daniel is such a great little traveler. The doctor was following up for a bit of a strabismus problem that we had noticed way

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-49024710867342329002008-03-21T19:58:00.002-04:002008-03-21T20:12:00.533-04:00

Daniel has been going to pool therapy for the past few weeks. In the bathtub Daniel is very happy and kicks and laughs and splashes everywhere and so we thought it best to get him into the pool and have it work for him. He is very hesitant at first but when he gets into his comfort zone it is like he transforms into a little fish. He is calm and relaxed at times and very "free" to move both his

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-8802851500732884902008-03-10T15:17:00.002-04:002008-03-10T15:20:24.148-04:00

In my last blog post, I mentioned where I hated that F'n family. I know that a few people (my husband included) thought that I was referring to the Rummel-Hudson family and that is not true. I was intending to refer to the family of diseases that plagues both Daniel and Schuylar. I hope that makes sense to everybody now.

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-36924737229866366522008-03-05T07:16:00.002-05:002008-03-05T14:38:53.539-05:00

I am not very good at reviewing things. Normally, I don't have a very good objective outlook for things. I will either love something or hate it. I am not even very good when it comes to rating something on a scale of 1 to 5 or 10, I will usually pick the middle just to play it safe. I don't know why it is really. Maybe I was just raised to not be that critical (though I do an excellent job of

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-30183787749069187312008-02-27T09:07:00.004-05:002008-02-27T09:13:57.683-05:00

Daniel talks a lot of baby talk: mama, dada, lala (we think, Alison). Just the other day, however, out of his mouth very clearly came: "Obama."There you have it. Daniel has made his endorsement. And in case you were wondering, Ralph Nader entering the race doesn't seem to affect Daniel's position.

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-8956774357285949732008-02-23T02:45:00.002-05:002008-02-23T02:58:48.659-05:00

Hard to believe that Daniel is 18 months old. Even harder to believe is that his sister will be 5 in just a little over a month! Where in the world does the time go? I cannot remember back to when they were so little and that time just keeps slipping away. Tonight I looked at Daniel and saw a reflection of a little boy staring back at me. He is becoming quite the little "devil." He wants to grab

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-77452005259246094322008-02-11T09:54:00.000-05:002008-02-11T10:12:18.390-05:00

We've been reporting for a while now that Daniel enjoys rolling around on the floor, since he hasn't quite figured out crawling. He rolls from back-to-front to back-to-front to get where he wants to go.Where Daniel has been wanting to go lately is his sister's lap ... or stomach, shoulders, whatever part he can grab. Daniel is clearly through with observing Alison's play; he's ready to join in

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-199408256129984232008-01-28T03:17:00.000-05:002008-02-03T08:43:54.196-05:00

It's the little things in life that keep you going sometimes. So without further ado: Daniel clapped his hands together for the first time this weekend! We were all so very proud of him. I don't think he realized what a big deal it was but he was definitely happy that we were so happy. Sweet little boy. Now we just need to teach him to clap when his sister finishes with her "performances."

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-90533788415749562982008-01-23T05:57:00.000-05:002008-01-23T06:04:47.155-05:00

When will I accept that Daniel has to be the one with the horrible disease? When will I realize that this is what we all have to face everyday of our lives? When will others accept any child with a disability? When will we be able to not fight for more services, they will just be there? When will Daniel crawl? When will he walk? When will he realize that he is different and by that realization be

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-11713132573046375392008-01-10T00:56:00.000-05:002008-01-10T01:23:00.862-05:00

The new year has been relatively quiet and dare I say somewhat good? I have gotten a new job with the new year and it is incredibly exactly what I needed for a job. However, it is full time. Well, it is whatever amount of time I want it to be but we need the money so it needs to be full-time. This is fine with me because I like the work I am doing and it keeps me busy, but it is also difficult to

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-34830202085471623922007-12-29T03:14:00.000-05:002007-12-29T03:34:14.444-05:00

Now that it is closer to the new year, I feel compelled to make some new year resolutions. However, this year will be drastically different from past new year's resolutions. Though I would love to have the weight loss and the personal finance security, I feel that those resolutions are not only unpredictable and in some ways unattainable but also somewhat shallow. This year, my resolutions are a

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-66038264924941095022007-12-19T17:22:00.000-05:002007-12-19T20:01:02.415-05:00

Daniel and I and my father traveled to Charlottesville yesterday to go to see the Audiologist. This was a referral from the neurologist whom I have given up on. It was an appointment that we rescheduled several times due to timing and also because I didn't actually think there was anything wrong with Daniels hearing. The appointment was for 8:30 in the morning so we all had to get up and out of

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-24666682938046516062007-12-10T00:32:00.000-05:002007-12-10T01:23:02.014-05:00

I have always liked watching those end of the year clip shows that piece together all of the happenings of the past year (good and bad) and set them to music. For some reason the music somehow makes even the bad stuff seem OK. We are heading into the New Year at an amazing pace and I can't help to think of the past year and all that has happened in our lives--good and bad. Now I don't have any

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-9645344969255179872007-12-01T19:33:00.000-05:002007-12-01T19:53:56.110-05:00

I know it's been a while since our last post. It was not due to the fact that we were still digesting the turkey from Thanksgiving, but rather we were all on the mend (in one form or another). From colds to spleen injuries, we have all been just barely getting by each day. I won't bore you with the details though. Something I've been wanting to write about since before the Thanksgiving break is

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-90277565371090910932007-11-17T09:08:00.000-05:002007-11-18T05:10:12.765-05:00

Lately I've been feeling the need to talk more about Daniel's diagnosis and to gain support (if there is any) from others.The problem is that it really doesn't come up in the general everyday conversation and I can't just blurt out to people, "Hi, it is cold out today, my son has Lisscencephaly, how are you?" Right, that wouldn't sound good now would it?I think about the reaction that may be

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-35745624325381789052007-11-15T08:30:00.000-05:002007-11-15T09:02:11.824-05:00

If you've heard about this then you can understand how mad I am. We don't even have this product but it still infuriates me. I mean who in their right mind would even think that this is okay for little children to play with? What, do they think that small children do not swallow small things? I am really appalled by the amount of toys that are out there these days that are unsafe for our children

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-6820507942639134502007-11-11T06:33:00.000-05:002007-11-11T06:56:58.356-05:00

I was shocked the other day at the realization that Thanksgiving is a mere 2 weeks away. I am not prepared. Not that I will be hosting the event but still, it was just Halloween people! Time just flies.We will be going to my sister-in-law's house to cook and eat until our hearts content (and until I've gained back the nearly 9 pounds I've lost). My sister-in-law (Jason's sister) like us has two

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-84454192859311932872007-11-08T12:37:00.002-05:002007-11-08T13:12:48.231-05:00

Lara and I received an email from a Massachusetts woman who came across our blog. (Apparently, if you Google "lissencephaly blog," ours comes up toward the top of the results.)She wanted to let us know about her 18-month-old daughter, Katie. Like Daniel, Katie has been diagnosed with a mild form of lissencephaly. And like Daniel, Katie has been making developmental achievements.Katie's mom had

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-70854678898512804302007-11-04T18:07:00.000-05:002007-11-05T07:41:41.380-05:00

I believe that everything happens for a reason. Good or bad.I believe this because certain circumstances in my life have proved it to be true.When the decision came to move to NC it was the scariest decision I ever faced. Having never been out of NJ before, I had no idea how to leave. Also, the thought of leaving my family was even more scary.We moved to NC with one job (Jason's) and a 4 month

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-66559042361723740022007-11-03T11:29:00.000-04:002007-11-03T11:37:20.099-04:00

Although we created this blog primarily for Daniel, I wanted to share a recent report that we got from Alison's preschool teacher. Each week, Mrs. Rooney types up a brief weekly summary for us, highlighting Alison's experiences in the classroom.Below is an excerpt from Mrs. Rooney's latest report. It made us laugh out loud. Hope you enjoy it too.Alison really enjoyed being in the loft room this

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-91289741666155442942007-10-30T20:48:00.000-04:002007-11-02T15:54:56.998-04:00

There is so little written about lissencephaly in medical journals and on the Web that I find myself reading the same passages over and over again. Recently, I re-read the description of the disease on the National Institute of Neurological Disorders & Stroke website. (I won't link to the entry because it's too depressing in general.)One sentence seemed to stand out from all the negative

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-87850101004548328392007-10-26T09:26:00.000-04:002007-10-26T09:38:31.732-04:00

Yesterday Alison was invited to a friend's house to decorate Halloween cookies. The friend is from school and it was Alison and another little girl invited over to the friends house.The three girls got along well and made very creative designs on their pumpkin, cat, ghost and bat sugar cookies. I was there as well and got a chance to talk a little with the girls' moms. We found out a little about

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-11082438139653707462007-10-24T11:37:00.000-04:002007-10-24T15:36:49.750-04:00

We had our Geneticist appointment on Monday and we were able to travel back to the big city (Charlottesville) yet again. We met with the whole medical team of geneticist, all the way down to the medical student. Daniel was a good sport even though he was exhausted from waking up so early to drive there. Yes, I admit it was my fault for making the appointment for 9 am.We basically found out

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-55594713534446286252007-10-21T03:13:00.000-04:002007-10-21T03:22:53.414-04:00

Alison's preschool had parent teacher conferences on Friday. Much of the information we received from her teacher was positive. We learned that she is doing well at school with some minor problems that seem to be common for her age.One thing that did stick out in my mind and that I cannot seem to let go of is that the teacher said that Alison exhibits some qualities you would see in an only child

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-78503013363113796772007-10-16T13:53:00.000-04:002007-10-18T09:38:59.911-04:00

When we first learned of Daniel's diagnosis, of course things that we had observed in Daniels little life started to make sense to us.One such thing was Daniels tendency to have issues with choking or gagging on food or water. Before learning of his diagnosis, we really didn't think it was anything serious but with children with Lissencephaly, there can be problems with aspiration pneumonia and

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com4tag:blogger.com,1999:blog-7768145683929761912.post-54591059872217945022007-10-16T13:40:00.000-04:002007-10-16T13:43:33.055-04:00

I sent a message regarding my concerns about Daniel's head-shaking to the pediatrician at the Kluge children's rehabilitation center. Below is his encouraging reply:I do not believe the behavior is related to the lissencephaly, at least not directly. It may be a random behavior that he has initiated which is somehow self-reinforcing. I would suggest observing for a while. It may disappear

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-5029739480396913132007-10-13T07:42:00.000-04:002007-10-13T07:53:42.366-04:00

I came home from work one day this week and was happy to see Daniel hanging out on the floor, laying on his stomach and pushing himself up with his arms fully stretched. He smiled when he saw me. I talked to him a bit. And then he started shaking his head from left to right, as if he was saying "no."My first thought was, "How cute!" This was not something I had seen Daniel do before. I asked Lara

Jasonnoreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-27490322011520231322007-10-11T18:55:00.000-04:002007-10-11T19:11:46.260-04:00

A post or two ago I related how Daniel was a big boy. He is very tall and pretty chubby but they equal each other out. However, this does not make it any less difficult to carry him around for any length of time. Especially him.Let me explain: Daniel being hypotonic cannot exactly help shift his weight around. He will be held, but without holding himself up and therefore carrying him is like

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-33850443426508561002007-10-08T08:07:00.000-04:002007-10-08T13:03:35.805-04:00

I don't like Genes.Well, particularly the ones that may have caused Daniel's condition.The doctor at the Kluge Center was better than anyone about explaining them. If his condition is due to a recessive recessive gene that means that both Jason and I carry that gene and together there is that chance of having a child with Lissencephaly. The doctor explained that we all have millions (or billions)

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-85179959775990686932007-10-05T01:50:00.000-04:002007-10-05T02:37:15.270-04:00

Yesterday was a good day. One of the better ones I've had in a while. We had a visitor from England! My uncle Dave and we all (except Jason who had the busiest work day ever) piled in the car and drove to Shenandoah and ate lunch at Big Meadows Lodge. It is still pretty hot around here but it was cooler in the mountains and just right for a little jaunt. Dave enjoyed seeing Shenandoah and being

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com2tag:blogger.com,1999:blog-7768145683929761912.post-55410636917487185842007-10-02T18:29:00.000-04:002007-10-02T18:42:29.548-04:00

"Daniel is a big boy."That is the comment we get a lot. And it is true no doubt. He is very tall and very big. If he didn't have the developmental delays that he has, he would be running off a lot of that baby fat, but since he is not like most other toddlers we have been wondering how to give this boy some exercise.Last week we asked the physical therapist if there was anything we could or

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com0tag:blogger.com,1999:blog-7768145683929761912.post-76474692411164221502007-10-01T21:24:00.000-04:002007-10-02T08:58:07.941-04:00

Today, Lara and I took Daniel to a doctor's appointment at the Kluge Center, a children's rehabilitation clinic at the University of Virginia hospital. This was a referral made for us by the UVa neurologist who recently diagnosed Danny. (Lara is becoming quite familiar with the hour-long drive from Harrisonburg to Charlottesville, where most of the medical specialists are located.)The

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-76913544196005784622007-09-30T20:08:00.000-04:002007-09-30T20:16:45.445-04:00

The initial shock, anger and sadness has subsided for us. We have really tried to focus on day to day instead of the big picture--whatever that may be.Occasionally I will get jolted to a bad place. Like when Daniel's case manager said that we might want to consider supplemental health insurance through social security, I was not happy about thinking that he would need that. Or when Alison was

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-85203521917832104142007-09-27T14:10:00.000-04:002007-09-27T14:17:46.703-04:00

I was taking Alison to school today and of course the major part of any of her conversations with us these days is all about Halloween! Her costume choices change from day to day even hour to hour. Today she had in her mind (since the morning so it must be serious) that she would be a mermaid like Tasha and Uniqua (from The Backyardigans). She went on and on about how she would need to practice

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-9647377858440805432007-09-26T12:38:00.000-04:002007-09-26T12:49:39.000-04:00

When I had my eating disorder, going on 12 years ago now, I was told that I was a very strong person. I was strong for admitting I had a problem, for getting treatment and for sticking it out even during the most difficult of times. I wouldn't exactly call myself a success story though as even though I am no longer anorexic, there is still a disordered eating in me that makes me fat. However at

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com3tag:blogger.com,1999:blog-7768145683929761912.post-12203452219692286472007-09-25T21:50:00.000-04:002007-09-25T22:02:44.620-04:00

The funny thing about grief is that that stages can cycle through rather quickly. The only grief that I've ever experienced in my life was with death of loved ones. I've never felt these sort of emotions in quite this sort of scenario.So I went through some of the cycle - denial, anger, sadness -- and I know that I am likely to get caught up in these stages any time in the future. But today was a

Jasonnoreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-26907244501955167562007-09-25T14:05:00.000-04:002007-09-25T15:20:40.675-04:00

Finally a bit of good news. Just a glimpse (no pun intended) of something good that we have heard in a while. Daniel and I and my mom went to Charlottesville today (where Daniel will go to see many of the doctors he needs to see) to visit an opthamologist. Oh this guy (the doctor) was very nice, very good and very thorough.You see a few months ago we noticed Daniel's eye's sort of wandering. His

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com1tag:blogger.com,1999:blog-7768145683929761912.post-46695234262216460022007-09-24T16:18:00.000-04:002007-09-24T16:38:43.771-04:00

Hi there, Lara posting this time. Jason has done a great job in setting up this blog. He has actually unknowingly stolen some of my ideas but that's okay, I forgive him.Jason and I are having a difficult time wrapping our heads around this. We have both had our moments. Not in front of the kids though I am sure that they can sense something is not right. My one major question (maybe one of

Larahttp://www.blogger.com/profile/17911649915491775565noreply@blogger.com3