Ella has made some improvements in her speech and communication, but not as much progress as we would like. So, we are taking her to individual speech therapy outside of the school environment. She has her assessment tomorrow.
Ella now says "mama", "dada", "nana"(for my mother), "da-oo" (for my father) and has some other word approximations like "og-og" for frog. She also does a few other verbal things to communicate like making a mooing sound for a cow and panting to signify a dog.
We are hoping to find a therapist who will use PROMPT therapy with Ella. PROMPT is a style of therapy where the therapist touches the child in a certain way for each sound that is meant to be made. For example, to make an "M" sound the therapist would press the child's lips together lightly and make the sound. There is some indication that this type of therapy is particularly helpful for children with Ella's disability.
Hope that it goes well tomorrow and that I don't flake out and forget to write another post about how it goes!
Tuesday, February 23, 2010
Tuesday, August 25, 2009
tickle
Ella's latest thing is to tickle people from a distance. I think that it started out as a made up sign (she communicates using sign language, for those of you who haven't been paying attention), but it has turned into an amusing game. This is how it is played: Ella holds out her arm in your direction and wiggles her fingers at you as though she is tickling you. You, in turn, laugh and squirm as though you are really being tickled. Ella also laughs, repeats said tickle motions, and monotony ensues.
But here is the really cute and funny part. She tries to tickle everything. And she is not dissuaded by non action on the part of the receiver. For example, she continually tries to long distance tickle the cats with, of course, no affect what so ever. I just tell her that cats aren't ticklish.
I have also caught her trying to tickle stuffed animals, my computer, the box of Cheerios on top of the refrigerator, and various toys.
Tonight, as we were leaving a restaurant after dark, I pointed out the beautiful crescent moon to her. She stopped and stared at it for a little while, pointing at its location in the sky. She turned back toward the car, took a few steps, then stopped and turned to face the moon again. She slowly lifted her arm up and tried to tickle the moon.
But here is the really cute and funny part. She tries to tickle everything. And she is not dissuaded by non action on the part of the receiver. For example, she continually tries to long distance tickle the cats with, of course, no affect what so ever. I just tell her that cats aren't ticklish.
I have also caught her trying to tickle stuffed animals, my computer, the box of Cheerios on top of the refrigerator, and various toys.
Tonight, as we were leaving a restaurant after dark, I pointed out the beautiful crescent moon to her. She stopped and stared at it for a little while, pointing at its location in the sky. She turned back toward the car, took a few steps, then stopped and turned to face the moon again. She slowly lifted her arm up and tried to tickle the moon.
Thursday, August 13, 2009
Ella's heart procedure scheduled
Today we saw the doctor who will perform the procedure to close Ella's Patent Ductus Arteriosis (PDA for short). We scheduled the procedure for Wednesday, September 16th. Here is a brief rundown of what will happen.
We arrive at the hospital at 6:30am. We will get her checked in, etc. We get to stay with her until she falls asleep (they will be using general anesthesia). Then they take her into the "cath lab" where they do the procedure. They will insert a catheter into her femoral artery at the "hip crease" area near the groin (this is where the artery is closest to the skin). They will send the catheter up to the PDA area (right above the heart, between the aorta and the pulmonary artery). Then they inject iodine into the area and take an X ray so that they have a good picture to see exactly what size the opening is. If the opening is small enough, they use a spring looking device with fibers inside it to close the opening. They insert it, make sure that it won't go anywhere, and then, over a short period of time, blood clots form around the fibers and the spring and the clots close up the PDA. If the opening is to large to use the spring type device, then they use something called a Amplatzer Duct Occluder System. It is larger than the spring device, and looks kind of like a wire mesh drain stopper you would place in your kitchen sink (except much smaller, of course). We have been told that it is "more than a 50/50 chance" that they will end up using the smaller, spring like device. Which translates to: who knows until we really get in there and see what is going on. The advantages of the smaller device is that, if it migrates to some other area of the body instead of staying in the PDA, then it is easy to retrieve. If the larger occluder is used and it decides to take a trip, then they would have to do surgery to remove it. Now, we have been told that the chances of either device moving out of position is very unlikely, but I still think that we are hoping that the opening is small enough for them to use the spring.
Once they decide which one to use, they will place the device and make sure that it doesn't go anywhere (we were told that if a device migrates, that it will do it very soon after placement...it isn't like she is going to turn 25 and all of a sudden have this thing flying around inside her body). Then she gets wheeled into recovery (she will be in the cath lab for around 3 hours total) and should stay there for 4 hours or so. We will be able to be with her in the recovery room, but not in the cath lab.
If everything goes well and she doesn't have any complications, we will be able to go home late that same day. If they use the larger of the two devices, and/or something does get complicated, they may keep her overnight for observation.
Matt intends to get an I phone before the procedure. Therefore, we will be able to make blog posts and facebook updates at the hospital as things happen. So, if you want to stay updated, just log on.
All your wishes, prayers, or bizarre homemade rituals are greatly appreciated.
I will also take any good book suggestions because I am going to have to be reading something really good to relax me and take my mind off things that day. I am sure that everything will probably go just fine, but a good novel always help make time to faster...and who wants to spend 12+ hours in a hospital just waiting!
We arrive at the hospital at 6:30am. We will get her checked in, etc. We get to stay with her until she falls asleep (they will be using general anesthesia). Then they take her into the "cath lab" where they do the procedure. They will insert a catheter into her femoral artery at the "hip crease" area near the groin (this is where the artery is closest to the skin). They will send the catheter up to the PDA area (right above the heart, between the aorta and the pulmonary artery). Then they inject iodine into the area and take an X ray so that they have a good picture to see exactly what size the opening is. If the opening is small enough, they use a spring looking device with fibers inside it to close the opening. They insert it, make sure that it won't go anywhere, and then, over a short period of time, blood clots form around the fibers and the spring and the clots close up the PDA. If the opening is to large to use the spring type device, then they use something called a Amplatzer Duct Occluder System. It is larger than the spring device, and looks kind of like a wire mesh drain stopper you would place in your kitchen sink (except much smaller, of course). We have been told that it is "more than a 50/50 chance" that they will end up using the smaller, spring like device. Which translates to: who knows until we really get in there and see what is going on. The advantages of the smaller device is that, if it migrates to some other area of the body instead of staying in the PDA, then it is easy to retrieve. If the larger occluder is used and it decides to take a trip, then they would have to do surgery to remove it. Now, we have been told that the chances of either device moving out of position is very unlikely, but I still think that we are hoping that the opening is small enough for them to use the spring.
Once they decide which one to use, they will place the device and make sure that it doesn't go anywhere (we were told that if a device migrates, that it will do it very soon after placement...it isn't like she is going to turn 25 and all of a sudden have this thing flying around inside her body). Then she gets wheeled into recovery (she will be in the cath lab for around 3 hours total) and should stay there for 4 hours or so. We will be able to be with her in the recovery room, but not in the cath lab.
If everything goes well and she doesn't have any complications, we will be able to go home late that same day. If they use the larger of the two devices, and/or something does get complicated, they may keep her overnight for observation.
Matt intends to get an I phone before the procedure. Therefore, we will be able to make blog posts and facebook updates at the hospital as things happen. So, if you want to stay updated, just log on.
All your wishes, prayers, or bizarre homemade rituals are greatly appreciated.
I will also take any good book suggestions because I am going to have to be reading something really good to relax me and take my mind off things that day. I am sure that everything will probably go just fine, but a good novel always help make time to faster...and who wants to spend 12+ hours in a hospital just waiting!
Wednesday, July 29, 2009
summer school is almost over
Ella only has one more day of summer school. Then she and I have 5 weeks of uninterrupted together time. My immediate thought is: Holy Cow, what am I going to do with her for 5 weeks!?!
It was only 5 months ago that Ella even started going to school. Before that she and I were together all day, every weekday. How quickly we get used to a new routine. How attached I get to my little bit of alone time. OK, I don't really spend much of it alone, unless you count running errands at Target and Giant, or working out at the gym "alone time". Most of the time she is in school I spend doing things that are easier done without her around like running those errands, or vacuuming the house (she doesn't like the sound of the vacuum). Yesterday I spent most of my time at the dentist and working out. Today I had to take two of the cats to their annual Veterinarian visit. I guess I should be more worried about how to get things done when she is out of school than about relaxing and having some fun by myself.
So, this is my plan. Every morning we get out of the house for a few hours. We run no more than one errand at a time, and then we get to go to the playground or to the pool. One or two days a week I will take her to the gym so that I can still try to work out and shed some of my love of chocolate off of my stomach. One day a week we will try to do something out of the ordinary like going to the science center in Baltimore. We will always try to be home by nap time and the hour or two after nap but before dinner will mostly be spent running around the back yard (her new favorite past time). We both need variety. I need it to make the time pass more quickly, and she needs it because she gets so much variety of activity in school.
I have my plan. Now I just need to pray that she doesn't decide to drop her nap on me before she starts school again in September.
It was only 5 months ago that Ella even started going to school. Before that she and I were together all day, every weekday. How quickly we get used to a new routine. How attached I get to my little bit of alone time. OK, I don't really spend much of it alone, unless you count running errands at Target and Giant, or working out at the gym "alone time". Most of the time she is in school I spend doing things that are easier done without her around like running those errands, or vacuuming the house (she doesn't like the sound of the vacuum). Yesterday I spent most of my time at the dentist and working out. Today I had to take two of the cats to their annual Veterinarian visit. I guess I should be more worried about how to get things done when she is out of school than about relaxing and having some fun by myself.
So, this is my plan. Every morning we get out of the house for a few hours. We run no more than one errand at a time, and then we get to go to the playground or to the pool. One or two days a week I will take her to the gym so that I can still try to work out and shed some of my love of chocolate off of my stomach. One day a week we will try to do something out of the ordinary like going to the science center in Baltimore. We will always try to be home by nap time and the hour or two after nap but before dinner will mostly be spent running around the back yard (her new favorite past time). We both need variety. I need it to make the time pass more quickly, and she needs it because she gets so much variety of activity in school.
I have my plan. Now I just need to pray that she doesn't decide to drop her nap on me before she starts school again in September.
Thursday, July 23, 2009
Isn't it funny
I find it very amusing that Ella behaves differently when at school than when she is at home. For example: she will not eat a sandwich at home. Even if I cut it up exactly as the assistant has told me she does it for her at school.
Also, her teachers are always exclaiming to me how pleasant Ella is. She never gets angry, throws tantrums, or cries. "No," I always say, "she saves all the tantrums for me, at home." At least I am lucky that about 90% of her tantrums are at the house. The other 10% are usually at the grocery store.
As a side note. She has a new food. She now likes grilled cheese sandwiches. She won't eat one at home....but she will eat one at school!
Also, her teachers are always exclaiming to me how pleasant Ella is. She never gets angry, throws tantrums, or cries. "No," I always say, "she saves all the tantrums for me, at home." At least I am lucky that about 90% of her tantrums are at the house. The other 10% are usually at the grocery store.
As a side note. She has a new food. She now likes grilled cheese sandwiches. She won't eat one at home....but she will eat one at school!
Wednesday, July 8, 2009
Annual Cardiologist Visit
Brief review of last years meeting: Ella's Patent Ductus Arteriosis is small but still open. It will not close by itself. It has caused no harm to the heart yet, and Ella has no symptoms. She will eventually need a cathaterization (as opposed to the more invasive surgery) to close it. The procedure will include anesthesia but it is done out patient style.
Today's meeting: PDA still open. No damage to lungs. Left ventricle of heart is starting to enlarge. The enlargement is minimal and is not causing any damage. We are being referred to the doctor who does the actual cathaterization procedure, but are told that there is no big hurry. The new doc will look at Ella's info and make a recomendation as to when she will have the procedure. He may say do it soon, he may say wait and year and see what happens.
notes on the actual details of trip to the doc's office: Ella is grunting and groaning in the waiting room. I check her diaper and it is clean. When asked if she wants to go the the potty, she says yes. In the bathroom there is more grunting and groaning but no action and she says she is done. Once out in the waiting room again, she immediately fills the diaper. So, back to the bathroom for a full diaper change.
Also, this year she HATED the EKG test. Screamed and cried through most of it. Last year the EKG was easy and problem free, and the ecocardiogram was difficult for her. However, she had little to no problem with the ecocardiogram today. Strange.
So, now I make another doctor's appointment and we see what this one has to say.
Today's meeting: PDA still open. No damage to lungs. Left ventricle of heart is starting to enlarge. The enlargement is minimal and is not causing any damage. We are being referred to the doctor who does the actual cathaterization procedure, but are told that there is no big hurry. The new doc will look at Ella's info and make a recomendation as to when she will have the procedure. He may say do it soon, he may say wait and year and see what happens.
notes on the actual details of trip to the doc's office: Ella is grunting and groaning in the waiting room. I check her diaper and it is clean. When asked if she wants to go the the potty, she says yes. In the bathroom there is more grunting and groaning but no action and she says she is done. Once out in the waiting room again, she immediately fills the diaper. So, back to the bathroom for a full diaper change.
Also, this year she HATED the EKG test. Screamed and cried through most of it. Last year the EKG was easy and problem free, and the ecocardiogram was difficult for her. However, she had little to no problem with the ecocardiogram today. Strange.
So, now I make another doctor's appointment and we see what this one has to say.
Thursday, June 11, 2009
school
Since mid-March Ella has been attending a MINC-T (mixed intense needs class-toddler) in a local elementary school. She has done very well and made lots of progress. So, she is being moved up for next school year. Beginning in September she will be in a 3 year old preschool class (as opposed to a MINC-Preschool). It is still a special ed class (half of the students are in the special ed program and half of the class, called peers, are paying "normally progressed" students), but the children in it have less intense delays or disabilities than in the MINC.
I am very happy that she has made so much progress that they want to move her up to a "better" class, but I am sad for her at the same time because none of the kids who are in her class now will be going with her. Given how social she is, I am sure that she will love the new class just as much as she loves her current one.
Also, she is attending a summer session of classes (called ESY: extended school year) so that she won't lose any of her skills over the long break.
I am very happy that she has made so much progress that they want to move her up to a "better" class, but I am sad for her at the same time because none of the kids who are in her class now will be going with her. Given how social she is, I am sure that she will love the new class just as much as she loves her current one.
Also, she is attending a summer session of classes (called ESY: extended school year) so that she won't lose any of her skills over the long break.
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