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| Eliana Piera DeSantis |
Wednesday, June 16, 2010
Monday, May 3, 2010
Dedication Day
We've said many times that Lucas belongs to God, but we've never had a formal dedication for him at church. Since baby peanut is only a few weeks away, we thought now would be as good of a time as any. Grandma and Grandpa Brooklyn flew in for the weekend, and we had a great time going to Grant's Farm on Saturday. At church on Sunday I got to share Lucas' story during the dedication ceremony, and we had a big group of family and friends meet up with us at Yacovelli's for lunch afterwards. A good time enjoyed by all.
Here are some pics from the weekend:
Here are some pics from the weekend:
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| Lucas' Dedication Weekend |
Thursday, April 29, 2010
Exciting New Update!
I'm currently in the office next to a super-joyful boy with a growing puddle of slobber beneath him. He is cute beyond words. :)
Anyway...
Today we saw the neurologist (Dr. Burris) again for our regular appointment. (We go every 3-4 months.) For the past year or two, most appointments are the same; we talk about seizure numbers, medicine effects, possible other medicine options (when appropriate), and the possibility of scheduling the surgery that would correct Lucas' drifting left eye. The surgery was scheduled almost 2 years ago, but was canceled by the anesthesiologist the day before due to his concern about Lucas' seizures. Dr. Burris gave the okay, but not in enough time. (They did not give him much time to return their call before they pulled the plug.) Today, however, Dr Burris said "Go ahead!" As soon as I could call the ophthalmologist's office I did. :)
There is another procedure that Lucas is to have as well that is performed by another doctor. When Lucas had his hypospadias correction, a little hole formed along the suture line and the urologist, Dr. Austin, wants to close that up. Currently, Lucas pees from two holes. Kind of cool, but not the kind of cool you want forever. The nurse from Dr Lueder's office (ophthalmology) and the nurse from Dr. Austin's office made several phone calls back and forth and to me in between trying to schedule as soon as possible without interfering with Baby Peanut's birth or our trip to NYC for Marc's sister's wedding. They pulled some strings and we are a go for surgery June 14th!!! I am super pumped about this. Marc, the worrier in the family, is concerned the stress of Lucas' surgery will encourage me to go into labor 10 days early, but I reminded him that he is the worrier and I will be fine. It is an out patient procedure and he should be all healed and fine and fabulous with eyes aligned for his role as ring bearer. :)
I am also excited about this because I have been hopeful that we could get it done before he begins preschool in the fall. We had his Individual Education Program (IEP) meeting this past Friday. We met with the team of people who will be supporting him through the school year, should we stay in this school district. The team includes the classroom teacher, all the therapists (new ones, not the ones he's had so far) and the school nurse. They were all lovely and I feel that I can trust them with Lucas' care for three hours a day, four days a week. The purpose of the meeting is to get to know Lucas' needs a bit better (he had several observations/evaluations previous to the meeting) and to set achievable goals for the school year. One is that he stand unassisted for 2-5 seconds two out of four days in a week. Another is that he pick up and drink from his cup on his own. There are many others. All of them , I think will be great and I hope will be achieved before the end of the school year.
As far as where we will be in the coming school year, that has yet to be determined. We have looked at a few houses and our house has been viewed a few times, but so far no bells or whistles sounding on either front. The tax credit is scheduled to expire the end of business tomorrow. We have not decided what we will do, stay on the market and keep eagerly looking or pull off and settle in at least until after the Peanut arrives. Nothing more really to say about that now, but we will let you know if anything moves there. :)
I need to get to dinner now. We have a few photos to post, and hopefully more will be coming next week, perhaps along with some exciting video of another giant progression Lucas is beginning to make. I would write about it now, but instead I am going to get to food preparation. I think my family will appreciate that and you all can chew on this exciting bit for now, with growing anticipation of more in the near future. :)
Blessings and love to you all!
Anyway...
Today we saw the neurologist (Dr. Burris) again for our regular appointment. (We go every 3-4 months.) For the past year or two, most appointments are the same; we talk about seizure numbers, medicine effects, possible other medicine options (when appropriate), and the possibility of scheduling the surgery that would correct Lucas' drifting left eye. The surgery was scheduled almost 2 years ago, but was canceled by the anesthesiologist the day before due to his concern about Lucas' seizures. Dr. Burris gave the okay, but not in enough time. (They did not give him much time to return their call before they pulled the plug.) Today, however, Dr Burris said "Go ahead!" As soon as I could call the ophthalmologist's office I did. :)
There is another procedure that Lucas is to have as well that is performed by another doctor. When Lucas had his hypospadias correction, a little hole formed along the suture line and the urologist, Dr. Austin, wants to close that up. Currently, Lucas pees from two holes. Kind of cool, but not the kind of cool you want forever. The nurse from Dr Lueder's office (ophthalmology) and the nurse from Dr. Austin's office made several phone calls back and forth and to me in between trying to schedule as soon as possible without interfering with Baby Peanut's birth or our trip to NYC for Marc's sister's wedding. They pulled some strings and we are a go for surgery June 14th!!! I am super pumped about this. Marc, the worrier in the family, is concerned the stress of Lucas' surgery will encourage me to go into labor 10 days early, but I reminded him that he is the worrier and I will be fine. It is an out patient procedure and he should be all healed and fine and fabulous with eyes aligned for his role as ring bearer. :)
I am also excited about this because I have been hopeful that we could get it done before he begins preschool in the fall. We had his Individual Education Program (IEP) meeting this past Friday. We met with the team of people who will be supporting him through the school year, should we stay in this school district. The team includes the classroom teacher, all the therapists (new ones, not the ones he's had so far) and the school nurse. They were all lovely and I feel that I can trust them with Lucas' care for three hours a day, four days a week. The purpose of the meeting is to get to know Lucas' needs a bit better (he had several observations/evaluations previous to the meeting) and to set achievable goals for the school year. One is that he stand unassisted for 2-5 seconds two out of four days in a week. Another is that he pick up and drink from his cup on his own. There are many others. All of them , I think will be great and I hope will be achieved before the end of the school year.
As far as where we will be in the coming school year, that has yet to be determined. We have looked at a few houses and our house has been viewed a few times, but so far no bells or whistles sounding on either front. The tax credit is scheduled to expire the end of business tomorrow. We have not decided what we will do, stay on the market and keep eagerly looking or pull off and settle in at least until after the Peanut arrives. Nothing more really to say about that now, but we will let you know if anything moves there. :)
I need to get to dinner now. We have a few photos to post, and hopefully more will be coming next week, perhaps along with some exciting video of another giant progression Lucas is beginning to make. I would write about it now, but instead I am going to get to food preparation. I think my family will appreciate that and you all can chew on this exciting bit for now, with growing anticipation of more in the near future. :)
Blessings and love to you all!
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| April 2010 |
Having some fun
There's a lot of news to report on the Lucas front, but for now here's a little video of me and Lucas having some fun:
Monday, April 12, 2010
Getting messy
Lucas is getting his molars in, so he's been getting especially messy during dinner lately. He loves to put his hands into his mouth (all day long), but especially so when he's eating - which results in a lot of food getting everywhere.
Tonight at dinner he was having fun gurgling water and then letting it all fall out of his mouth. I didn't get the messy part on video, but at least I got the cute part:
Tonight at dinner he was having fun gurgling water and then letting it all fall out of his mouth. I didn't get the messy part on video, but at least I got the cute part:
Friday, April 2, 2010
Little man comes to work
Lucas and Esther came to meet me for lunch today. Lucas got to hang out at my desk for a bit:
Friday, March 26, 2010
Here it is
We've told many of you that there exists some video of Lucas playing and "talking", but are only now posting it. I am thankful for the technology; I just hardly use it. :)
The back story is this:
Lucas has begun to make some talking sounds again, for the first time in over a year. We are super thrilled about this and eager to share our joy (though apparently not eager enough to get online and post about it for over a month now; I am a true blog slacker). He isn't saying words, not in English anyway, but he is definitely making sounds he hasn't and forming some kind of language-ish vocalization. This began within the first ten days after we stopped the Depakote. Not sure how related the two are as Lucas also seems to be growing (eating a ton!) more and he is cutting his two year molars (super slobber!).He is tolerating the new medicine, Felbatol, quite well. It is a liquid that he only has to take twice a day.
Having the freedom to not put medicine into his food is an almost incommunicable relief. I don't think I realized the stress I experienced fretting over the consistency of his food, how much he ate, whether or not food would fall, etcetera. We have been able to get back to challenging him in texture, consistency and size of his food. It is good for him to grow in this. It isn't typical to think about the struggle a child might face eating a chicken nugget, but until recently, Lucas wouldn't eat it unless it was mashed and mixed with potatoes or overcooked pasta or something else you can smash. Little things bring great joy to my life. :) He also, just in the past few days, has begun to realize how to use his fingers to get food unstuck in his mouth. I was feeding his peanut butter and jelly and was unsure at first what he was doing. We had never seen him suck his thumb, but he was. A few bites later, he was sucking his fingers. Then we realized he was wiggling his phalanges around his mouth to loosen the food stuck to the roof of his mouth. Our brilliant son. :)
As far as the seizures, they are still present. We just increased his dose again two nights ago. I feel it is still too early to say how it's working, but there seem to be some certain improvements. Nothing consistent yet, but the numbers seem to be dropping. We also got the results on his first round of blood work since beginning the Felbatol and his liver and bone marrow functions seem fine. Praise God!
He also seems to be more stable physically. He is getting stronger in his arms and legs and is holding up his head/trunk much more steadily. You can see in the video him using his right hand also. (He's a lefty, but we encourage him to use his right hand too.)
I hope you enjoy. I am off to fix dinner.
Love and blessings to you all!
The back story is this:
Lucas has begun to make some talking sounds again, for the first time in over a year. We are super thrilled about this and eager to share our joy (though apparently not eager enough to get online and post about it for over a month now; I am a true blog slacker). He isn't saying words, not in English anyway, but he is definitely making sounds he hasn't and forming some kind of language-ish vocalization. This began within the first ten days after we stopped the Depakote. Not sure how related the two are as Lucas also seems to be growing (eating a ton!) more and he is cutting his two year molars (super slobber!).He is tolerating the new medicine, Felbatol, quite well. It is a liquid that he only has to take twice a day.
Having the freedom to not put medicine into his food is an almost incommunicable relief. I don't think I realized the stress I experienced fretting over the consistency of his food, how much he ate, whether or not food would fall, etcetera. We have been able to get back to challenging him in texture, consistency and size of his food. It is good for him to grow in this. It isn't typical to think about the struggle a child might face eating a chicken nugget, but until recently, Lucas wouldn't eat it unless it was mashed and mixed with potatoes or overcooked pasta or something else you can smash. Little things bring great joy to my life. :) He also, just in the past few days, has begun to realize how to use his fingers to get food unstuck in his mouth. I was feeding his peanut butter and jelly and was unsure at first what he was doing. We had never seen him suck his thumb, but he was. A few bites later, he was sucking his fingers. Then we realized he was wiggling his phalanges around his mouth to loosen the food stuck to the roof of his mouth. Our brilliant son. :)
As far as the seizures, they are still present. We just increased his dose again two nights ago. I feel it is still too early to say how it's working, but there seem to be some certain improvements. Nothing consistent yet, but the numbers seem to be dropping. We also got the results on his first round of blood work since beginning the Felbatol and his liver and bone marrow functions seem fine. Praise God!
He also seems to be more stable physically. He is getting stronger in his arms and legs and is holding up his head/trunk much more steadily. You can see in the video him using his right hand also. (He's a lefty, but we encourage him to use his right hand too.)
I hope you enjoy. I am off to fix dinner.
Love and blessings to you all!
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