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October 11, 2004
Well, I'm finally able to update this site again! Yeah!!!
Ellie is now able to stand independently and is crusing between the couch and the loveseat on a regular basis. I expect
she'll be walking before Yule!
I'm going to post a video of her walking soon and one of her standing independently, too.
June 16, 2004
Well, it's only been MONTHS since I've updated. I'm lousy at this.
Actually, I've been too busy. Ellie has just taken off. She is now
walking using a Kaye reverse walker, is using sound-words and calls me "mama"!
She's just blossoming. I can't even begin to document the changes in her.
She can hold her own juice cup now, feed herself (with assistance), walk, and most
importantly - PLAY!
Just last night she was playing catch with herself. She was tossing one of
her ball pit balls at the wall, and Charliekitten was batting it back to her and Ellie would toss it again. It was so
wonderful to watch her play, and not just shake the toy in her hand.
She is more like a 15 month old than a 2 year old, but the progress has been so
swift and so amazing. Just 4 months ago, she was testing at around 10 months!
I can't wait for next year!
February 17, 2004
The deed is done...I have fired the crummy OT finally. It isn't really her fault, she's just too
inexperienced to really help Ellie. So, on Thursday, we have an eval at All Children's SCC with Ellie's new OT.
Oh, yea...just can't wait for that...but now I'll blame any delay on the lousy OT she's had for the last year!
Ellie continues to improve in her crawling every day, and today crawled about 50 feet down a hallway
at the clinic!
We also got her Tripp Trapp highchair today. We are still waiting on the tray, though. Hopefully, it will come soon.
I hadn't really realized how much Ellie's sitting has improved until today. Six months ago, she
would have slid sideways right off this chair. But now, she sits in it like an old pro, barely even slumping!
It is truly amazing to see a child who less than a year ago couldn't hold her own head up moving around on her own, sitting
straight and tall and finally exploring her world.
Ellie is one tenacious little girl, and I have every confidence that she will be as much a part of the
world around her as I want her to be!
February 16, 2004
Well, all is well in Ellie-land. She is continuing to crawl, albeit it at a breakneck
pace these days! I am changing her name to Mario Andretti! She keeps trying to get into a stand, too. However,
as she can't stand yet, her attempts are being twarted by nasty old gravity.
She will be getting casted for DAFOs either this week or next. Hopefully, once she gets them,
she'll be able to stand and then learn to walk.
On a very postivie note, I think she's started calling me "mama". She has used the "mama" sound
three or four times now, in context, and has stopped randomly babbling "mama".
Here's hoping!
January 29, 2004
Well, it's been awhile since I updated. Sorry folks...bad webmommie.
Ellie had an EEG today that was sleep-deprived. She was supposed to sleep during it, but the little
nutbar decided to stay awake. She was up until midnight last night, but still wouldn't sleep. Crazy kidmuffin.
Anyway, she's doing well. She's now started crawling all over the living room, and she's calling
me "momomommmommoom". Not exactly "mama", but a good try, nonetheless.
I've been tearing my hair out planning a reunion of the Hypotonia Support Board, but I've finally got
everything all straightened out. I can't wait to meet everyone in June!
Well, that's about all for now...
Keep my mom in your thoughts and prayers...she's having a cardiac catheterization next week...
January 12, 2004
Well, today was an okay day. We went to go visit the gastroenterologist at 9:15 AM.
We had to get up at 6:30 and get out of the house by 8:30, then drive across town in morning rush hour. Luckily, Miss
Rosie, who had not gotten my message canceling the morning's visit, came by and told me a quicker way to get to the doctor's
office.
Of course, I was running late. I swear, I REALLY will be late to my own funeral... We wound up
leaving at 8:45 and made it on time. A minor miracle, to be sure.
At the appointment, we saw Miss Megan. I was kind of surprised, because I thought she only worked
at ACH Specialty Care Center, and this appointment was at St. Joe's. But it was nice seeing her.
The appointment went well, and Ellie has been gaining 9 grams a day since September, which is normal
for a baby her age. She is still below normal in weight, but it is the rate of weight gain that is important.
So, we don't go back for 4 months! Yeah!
The morning was good, but then came the afternoon.
After Ellie's PT I was feeling pretty down. Ellie has been doing this quivery, shaky, tightening of all her muscles since
we've reduced her Tompamax (it is completely intentional, and she does it when she wants to move or say something). But it
is still freaky. And she's been kind of spacey, too. So, she didn't do very well in PT yesterday.
So, of course, I wanted to get an apple pie and a milkshake. But, in deference to
it being the first day of my diet, I decided we should go to the park instead.
Good choice!
As we drove up to the parking area, Ellie started to get excited. When I took her
out of the car, she was already smiling and hopping up and down in my arms. I swear, if I had put her on her feet, she would
have taken off running! She kept looking at the big kids playing and then at me as if to ask, "Can I do that?".
We did the baby swings, and she decided that sitting up wasn't fun enough, so she
maneuvered herself so that she was basically laying on her tummy on the upswing, arms outstretched like superbaby!
We also went down the slide. Well, Ellie went down the slide, while I held onto her
hands. She LOVED it! And then, I spied the bottom rung of a ladder. Always the thinkin' mama, I said to myself, "STANDING!!!".
So Ellie and I went over, I planted her feet in the sand and she reached right up and hung onto the rung. It was the perfect
height, and something about the sand made it really easy for her to stand. It was packed firmly, but I think it still gave
her more propriceptive input than just a flat floor.
She stood, with assistance, for almost 5 minutes. No break. I was astonished!
So, then we left Riverhills park, which is about 15 minutes from our house. We took
a back way home, and found another park! So we played there for awhile, and I decided that I like that park better. It has
these little benches, really low to the ground, that I can sit on and Ellie can use for standing support. They even have balance
beams there, for when she is older! And a tire swing! And 5 slides! And it is 5 minutes from our house.
So, I got a workout yesterday doing PT in the Park with Ellie.
Oh, Ellie is also "bear standing". I'll go to put her down to stand, and she'll bend
over and support herself with feet on the ground and hands on the ground, looking like a triangle. She will hold this herself
for several seconds! Yeah girl!
January 10, 2004
Well, nothing exciting happened yesterday; just went to speech. Ellie was very recalcitrant for
the first 15 minutes, but got some good chewing in at the end. She bit down on the gummy worm several times.
Last night, I was awoken at 3:00 am by a motorcycle racer, and couldn't get back to sleep.
I'm glad, because the temperature here plummeted last night. The wind kicked up to 20 mph gusts and the temperature
has been dropping ever since. It is supposed to get down to the low 30's tonite...and we have single pane, single hung
windows...can anyone say...BRRRRR?
Ellie has an appointment with her gastroenterologist on Monday morning (at 9:15am...sadists obviously
scheduled this appt. for us...). Hopefully, Dr. Winesett will be better than her last gastro. He had told us that
Ellie's skin tone was orange because I fed her too many carrots and sweet potatoes. Uh, dude, she's biracial...HELLO!!
I am not anticipating too many issues to be brought up on Monday, as Ellie's appetite is good and her
weight is on the charts. She is still needing the Miralax laxative, but I think she'll always need a little help in
that area.
Well, I'm not gonna post tomorrow, as Sunday in our official family day now. See ya'll on Monday!
January 8, 2003
Well, Ellie had another visit with the new OT today. This is the one that has two years experience
working with geriatric patients and NO experience with children or babies. Well, she did okay, but didn't really connect
well with Ellie. She never did get Ellie motivated to do anything. She kind of just put two toys in front of Ellie
and expected her to play with them correctly. Uh, I can do that... Anyway, I am still looking into replacing her.
Unfortunately, the place I wanted to get Ellie's OT from doesn't do home visits. They do provide cranio-sacral therapy,
which I am very interested in. They don't have any openings right now, either. The head OT said she'll be hiring
a new OT soon, but that she is picky and it might take some time. I like this place already!!!
Ellie also saw Miss Kathleen today for PT. Miss Kathleen doesn't think Ellie has Angelman's, either.
She's never treated a child with AS, but her colleague has, so she's familiar with the condition. Her take on it is
that Ellie babbles too much, and doesn't have the repetitive hand motions. Yes, she flaps her arms around, but only
when she's trying to say something! Or clapping or trying to do a sign.
Anyway, Ellie had a good day today. Mom and I rearranged her room earlier this week, and she really
likes it. I like it because I can let her play in there alone when I need to go do something somewhere else in the house.
Well, I'm off (like a prom dress, as Matthew says...what a dork!).
I promise a new picture soon!
January 7, 2004 (two in one DAY?!?)
Just wanted to post some cheery news...I got a toddler bed for Ellie. My neighbors across the
street were getting rid of a brand-new plastic frame toddler bed (white!!!) just cause they didn't have a mattress!
I also ganked a little white bookshelf! That is going into Ellie's closet for all her shoes...little shound (that's
Mommie speak for SHOe hOUND). So, a bit of a bright spot in kind of a yucky day...off to cook a meal now...wish me luck!
January 7, 2004
Well, we just got back from a visit to Dr. Gieron, Ellie's neurologist. It went pretty well, considering.
Dr. G wants to do some genetic testing on Ellie's DNA, which makes me scared. I kind of don't
WANT to know if she has a serious genetic issue at this point; she's doing so well, I feel that if we finally get a diagnosis,
it will just put limits on her. Dr. G wants to test for Ehler-Dalos syndrome and Angelman's syndrome. Ehler-Dalos
syndrome is a disorder that causes hypotonia, laxity in the joints and scarring - all problems Ellie has. However, it
only causes gross motor and fine motor delays, not the language and cognitive delays Ellie has. Nor are seizures associated
with it. Since both my brother and I also have some sympotoms of it, though, Dr. G is going to have a test done just
to rule it out.
Angelman's, on the other hand, is a scary diagnosis. The reason Dr. G wants to test for it is
that seizures are associated with it; Ellie likes to wave her arms and hands around alot; Ellie likes to hear the water hit
the metal sink (kids with Angelman's tend to be abnormally fascinated with water) and Ellie's cognitive and language delays
could be explained by it. I asked if Ellie wasn't already pretty high-functioning for a kid with Angelman's, as kids
with it tend to have serious problems interacting with the world, which Ellie doesn't. She can be slow to grasp a concept
and may not reach out and grab everything she sees, but she does like to sit quietly and watch everything around her.
She definitely processes information differently, but she does process it. I guess Dr. G is just ruling more stuff out;
she wants a diagnosis more than I do at this point. She really wants to be able to give me an accurate prognosis for
Ellie, but right now, I'm really okay with "wait and see". I can see that Ellie is making progress in all areas, and
I'm not sure if I want to know that her progress might end one day. I don't really believe in limits, necessarily.
I know Ellie has limits, but why should we only work on reaching an arbitrary limit? If we don't reach for the stars,
we'll never know how much she can do.
Anyway, the neuro visit went pretty well, other than the request for more tests. I'm not really
opposed; I just don't want them to be needed, you know? Dr. G is going to start weaning Ellie off of the Topamax.
I'm nervous about this, as I don't want the seizures to start back again, but I really don't think they will. Dr. G
said she's ruled out the possibility of Infantile Spasms, but I'm still not so sure. I still think we just got to Ellie
early enough to stop alot of the brain damage they can cause, so that's why her EEG wasn't the "classic" hypsarrythmia.
But, what do I know, right?
All in all, a pretty good day, so far. Ellie is napping now. She really went on people overload,
what with one med tech, one nurse and two doctors prodding her to do her tricks all morning! She never does her tricks
for Dr. G. She wouldn't even transition into a sit! And she's perfected that one! Little weasel...
January 6, 2004
Well, I've decided to make a whole new page for Ellie. The old one was getting
rather out of hand, and I didn't feel like editing it! So out it goes and here is a brand new one for a brand new year!
Ellie has done so much growing lately. She started crawling on Christmas day, and just keeps getting
better and better at it. I will post a movie of her crawling at PT on the home page when I am done with this.
She's also babbling more and more. She has two "words" now. She says "vavava" for TV and
"tat" for "cat". It's so funny; she always whispers "tat". What is really great is you can ask, "Ellie, where's
the cat?", and she'll look for him! She still won't call me "mom", but she is saying a very "mmmmmaaaammmmommm"-like
sound when she wants something!
She has an appointment on the 7th with Dr. Gieron, and I bet the good Doc will be floored with her progress.
Okay, Ellie is still radically behind the pace, but hey, she's still in the race, right?
Well, I'm off to go post that movie for everyone to see. Ya'll write some congrats in the guestbook,
will ya?
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