Dylan had her first therapy session with Pat this week! Though it was cut a little short because the EDI rep had to come over and get her signed back on to Dylan and we had to set a few goals around feeding. It was a little bit to chore to get her back on but apparently nothing that a very *ahem* 'determined' e-mail couldn't handle. Sarah was actually pleased to hear that she would be sharing Dylan with Pat. Allowing Sarah to do some work on speech with fine motor while Pat could do more gross motor and feeding.
Feeding with Pat did NOT go well. Dylan wasn't about it. It's so about the timing and sheesh, I can't ever seem to get it right! I will keep trying though. I am starting to try to feed her twice a day, that was if I don't get the feeding time right for one, I will for the other (hopefully). It's just hit and miss. It was recommended that she have a specific visual toy for only feeding time, as a reward for taking a bite. My mom gave her a Little Einsteins toy that plays music and has lights, it's much more a look-and-listen than a chew-on-me toy, so that's the one! She loves it, it makes her smile. The goal for now is ten bites of food, where I am to be somewhat insistent, each followed by the reward. It's only been two days but I have found if I can get ten bites in then she's a bit more cooperative for the rest of the time. I guess that's the goal?
Dylan has become a lot more vocal in the last few days. More vocal? Maybe turned up the volume. She really likes to hear herself talk! (More like her dad then we originally thought? J/k Babe, Love ya! Someday he's going to catch up on the blog and I am going to have some 'splainin' to do!) She yells, at the top of her lungs, Literally. It's adorable. I keep trying to get it on video, or on Matthew's voicemail but I think she senses the pressure's on and she is no performing monkey! If I am on the phone people ask "Is that happiness?" Yes, it's definitely happiness.
Holy moly! I just took a break to feed her and she ate a whole 3.5 ounce container of food that was thickened with probably a tablespoon of cereal. That's fabulous! And even better it took us less than 20 minutes! She did okay this morning, maybe an ounce and a half or so? But it took a lot longer, I usually plan on sitting with her for 45 minutes to an hour. So even the first session wasn't terrible! If it gets better from here? Woohoo! Go Dylie! (Yes, I realize soon I will be fighting off Duncan, thank goodness for Dora and Diego, nursing, all while feeding her. I can do it!)
Anyway, back from intermission... Dylan yells very loudly from her crib. It's what she does at night instead of sleeping. (Though last night wasn't terrible for the first time in a week or two so I am NOT complaining!) If it gets too bad I shut her door, our door and I have an earplug for one ear... yes, she's that loud. I have the monitor only on Duncan's room! Fortunately Duncan seems to be able to sleep through it even though they are neighbors. The goal was to have the new baby and Dylan share a room, we shall see how that goes! I can't wait to catch it on video, you'll see!
On Monday night the doorbell rang and I was in the middle of kid business so Jessica volunteered to answer it for me. She went to the door and it was our neighbors from a couple houses down. Mom, dad and McKayla. McKayla is a student in Matthew's Sunday school class, he teaches to the 12 and 13 year olds (most people's nightmare, for him almost a total joy...). She brought over a dish of cookies along with a note. It was so cute. She basically thanked him for being such a wonderful teacher and 'bringing happiness everywhere he goes'. She said even though it seems like they don't pay attention, they do, and she knows kids who wouldn't go if Matthew wasn't their teacher. The note was adorable, misspellings, scribbles and all and I must say, it brought a little tear to my eye. I knew I liked that girl! We had already decided that she's our sitter if we ever decided to voluntarily leave the house! We usually only go out when my mom senses I need it or if we absolutely have to!
Nothing else exciting here, it's been so cold this week we have been trying to keep inside though I did have to venture out to fill a prescription. I didn't like it one bit... but I while out I did finish off two more Christmas presents. Little by little.
Also - in new baby news - I can feel a perfect little round head just to the upper left of my belly button. This is a problem. Why? Because I should be feeling a perfect little foot right under my rib by now! This kid's set-up all wrong. Bah! I have an OB appointment tomorrow to see if it's indeed a perfect round head instead of a boney bum, but I am pretty sure. I keep hearing of babies flipping over later... I am just hoping, it would certainly make things easier!
Okay, I think I did get it on video yesterday... but it wasn't easy. In fact, this first one is what I mostly got.
Excuse the hair, a little pulled out during an especially turbulent attempt at nap time, I have no idea what it could have gotten caught on in the crib though. Must have been her finger. I am across the room taking this, I have to be, as soon as she sees the camera she gets a little camera shy!
10-30
NUM NUM NUM - Just adding that she ate 4 ounces again today! We skipped the morning feeding due to my appt, but this afternoon she ate like a champ!
Thursday, October 29, 2009
Monday, October 26, 2009
Newsflash! My kids are spoiled!
We had our two-year well child check up last Friday and we are growing! Well most parts of us anyway! While I am growing all over (let's thank #3 for that...) Dylan's growing in length and weight but not head circumference. That's a wee concern but I am not quite sure who to talk to about it. She has an appointment with the Plastic Surgeon and Neurosurgeon next week (about fixing the ridge on her temple) I guess I will ask them? Anyway... she is 28 inches long, (up from 26.2 May 8th) and she weighs 15.3 lbs (up from 12.7). Not too shabby. She's WAY below the average curve, but charting her own curve so it's alright. You should see the print out though, her curve's down in limbo! Duncan's 34 inches (32 in May) and 27.1 lbs (from 24 in may), it's almost to the 50th percentile for children born on time so growing growing growing!
The cake... So here's the thing. a couple weeks ago Matthew and I went to the grocery store together, it's an event... and usually our big evening out, and I thought it would be a good idea to have him go and order the cake. Now, I know for most men, this wouldn't exactly be the best chore, but it really seemed like it would be right up Matt's alley. With plenty of time to pre-order something nifty and cool, he and Duncan could flip through the little picture book together and get something good for them. When he met up with me again he said it was done and that he didn't get anything special on it. So... here's me, thinking he's teasing me and I will have a big surprise for their party. Oh no... he wasn't kidding...
Matthew picked up the cake and the first thing he said when he walked in the door was that Jessica would cry if she saw the cake. I informed him, she might, since she was planning on coming to their little gathering. The cake was terrible! Especially knowing we ordered it in advance. There wasn't any names or anything! Jess said she would order the cake for us next year!
White cake with white buttercream frosting... that's all I was specific about, and that's what I got!
I got a friendly text from Steve on Saturday (Jessica's birthday...) it said "My cake doesn't suck." He ordered Jess a cute little spider cake with funny legs with shoes on the end! Maybe STEVE should be in charge of the cake next year!
On to the party! I couldn't believe how many people came for my little gathering! I was very specific that it wasn't a requirement, nor a command performance but you would think I sent out special invites! It was amazing! We were so humbled by how many people came to celebrate with us!
Duncan caught on to present opening very quickly... I think it took two presents before he realized that there were good things hidden under those ribbons and paper! We got some of the greatest new toys and clothes! So spoiled! The next morning it was like a party all over again as both Dylan and Duncan kept going from toy to toy and rediscovering all the fun! Dylan was cute too, she would get soooo excited about her new toys! Everyone was getting a kick out of her loving everything up!
Thanks again for all of your love and support everyone! I am AMAZED how well our friends and family know exactly what type of toys both Duncan and Dylan are in to. We got a ton of new favorites!
Still tastes good right Duncan?
Yep!
Who's sharing the love?
Madison! She just had her birthday party, she was all about this cake stuff! (Her cake was adorable too by the way! Ha!)
That would be cake, in his crack, I have no idea how it got back there! It's a mystery!
Dylie was loving all the fun! (WOW check out that chubby belly in the background... who *is* that?!)
One of Dylan's new dresses after church on Sunday. I kept asking her who did her pony tail all crooked and stuff and she blamed me! *shrug*
Saturday morning... Duncan's still drumming on the new drum. He loves it! He hasn't quite caught on to the harmonica yet, but he loves when dad plays it so he keeps bringing it to him!
The other night Dylan was plum word out. I changes her shirt and fed her and she fell asleep while she was 'eating.' After she zonked I still took out her hair, changed her pants, finished dressing her and clipped her nails! Just like our little non-sleeper.... she woke up 20 minutes later!
Even the little one's spoiled! Grandma LouAnn got the new baby it's first little love! It's the softest wee little lamb EVER! Adorable!
The cake... So here's the thing. a couple weeks ago Matthew and I went to the grocery store together, it's an event... and usually our big evening out, and I thought it would be a good idea to have him go and order the cake. Now, I know for most men, this wouldn't exactly be the best chore, but it really seemed like it would be right up Matt's alley. With plenty of time to pre-order something nifty and cool, he and Duncan could flip through the little picture book together and get something good for them. When he met up with me again he said it was done and that he didn't get anything special on it. So... here's me, thinking he's teasing me and I will have a big surprise for their party. Oh no... he wasn't kidding...
Matthew picked up the cake and the first thing he said when he walked in the door was that Jessica would cry if she saw the cake. I informed him, she might, since she was planning on coming to their little gathering. The cake was terrible! Especially knowing we ordered it in advance. There wasn't any names or anything! Jess said she would order the cake for us next year!
White cake with white buttercream frosting... that's all I was specific about, and that's what I got!
I got a friendly text from Steve on Saturday (Jessica's birthday...) it said "My cake doesn't suck." He ordered Jess a cute little spider cake with funny legs with shoes on the end! Maybe STEVE should be in charge of the cake next year!
On to the party! I couldn't believe how many people came for my little gathering! I was very specific that it wasn't a requirement, nor a command performance but you would think I sent out special invites! It was amazing! We were so humbled by how many people came to celebrate with us!
Duncan caught on to present opening very quickly... I think it took two presents before he realized that there were good things hidden under those ribbons and paper! We got some of the greatest new toys and clothes! So spoiled! The next morning it was like a party all over again as both Dylan and Duncan kept going from toy to toy and rediscovering all the fun! Dylan was cute too, she would get soooo excited about her new toys! Everyone was getting a kick out of her loving everything up!
Thanks again for all of your love and support everyone! I am AMAZED how well our friends and family know exactly what type of toys both Duncan and Dylan are in to. We got a ton of new favorites!
Still tastes good right Duncan?
Yep!
Who's sharing the love?
Madison! She just had her birthday party, she was all about this cake stuff! (Her cake was adorable too by the way! Ha!)
That would be cake, in his crack, I have no idea how it got back there! It's a mystery!
Dylie was loving all the fun! (WOW check out that chubby belly in the background... who *is* that?!)
One of Dylan's new dresses after church on Sunday. I kept asking her who did her pony tail all crooked and stuff and she blamed me! *shrug*
Saturday morning... Duncan's still drumming on the new drum. He loves it! He hasn't quite caught on to the harmonica yet, but he loves when dad plays it so he keeps bringing it to him!
The other night Dylan was plum word out. I changes her shirt and fed her and she fell asleep while she was 'eating.' After she zonked I still took out her hair, changed her pants, finished dressing her and clipped her nails! Just like our little non-sleeper.... she woke up 20 minutes later!
Even the little one's spoiled! Grandma LouAnn got the new baby it's first little love! It's the softest wee little lamb EVER! Adorable!
Thursday, October 22, 2009
Look who's TWO!
The day after the twins were born, my brother in law David called me up at the hospital to check on things. Now, there's something you must know about David, he usually doesn't talk on the phone, he doesn't answer it, much less call people. It's not his gig. But, he was doing the brotherly thing and checking on how things were going. Well, along with trying to get a funny little jab in... When I answered the phone I was greeted with "How are the Double D's?!" I said... "Huh?!" He, very explained "You know, the Double D's! Duncan and Dylan!" Obviously very proud of this little nick name he had created to tease. At which time I said "Oh! David! I was wondering why you were asking about my breasts!" He was MORTIFIED! I really don't think he could get back OFF the phone fast enough. What did he expect? Needless to say, that nickname pretty much went right out the door. (Trust me... while this is a little funny to all, those who actually know David have more of an appreciation!)
So, today we celebrate two years with the Double D's! Two years ago Matthew and I threw everything we knew and expected about babies right out the window. They aren't SUPPOSED to be that little, and for that matter, they aren't SUPPOSED to be slightly dented right? While doctors and nurses were frantically trying to stop the process set in motion 9 weeks too early, we were asked several times if we were worried or why we were not freaking out. Well, nothing's really up to us, what good is freaking out going to do? Nothing will change. So, during a very serious delivery, while getting lectured by a stern Dr. Rose, Matthew's asking the many people in the room what their role was, comparing them each to players on a football field and asking them not to throw the 'ball' to the floor when they do their touchdown dance. Dr. Rose was not amused, not in the slightest.
I love when blogging friends ask questions of their little birthday stars. While my little stars are too young, I will do my best to improvise, and answer in the way that I think they would.
Duncan:
Favorite words: Uh-oh (followed in quick succession by...) Oh no! Cheese, Crackers, Mommy and Daddy. Mom and dad hear each of these words probably 25 times a day.
Favorite Food: Candy, pineapple and chicken.
Least Favorite Food: Macaroni and Cheese, and pretty much anything else with noodles.
Favorite Toy: Anything with mechanical parts, like wheels, or switches... or some other random item dad either gave me or left laying around like a tool, or a nail, or a nut and bolt.
Favorite activity when we have company: Run around the house squealing and screaming because I am so excited that friends came to play!
Most ticklish spot: Under my neck, I lose all control.
Least favorite thing to do: I am game for anything! Does it involve candy?
Nearly Intelligible phrases: See you! See you later! Thank you. There you are! There it is! There you go!
Dylan:
Favorite 'word': I love to do raspberries, all. day. long. Sometimes I can make fun bubbles too!
Favorite Food: Food? Yuck! Who needs food!
Favorite toy: The Butterfly and the silly feeding tube. These small items followed closely by anything that makes music like the music bus we are borrowing and will have to give back at some point. Oh, and hats... I lurve me some hats!
Favorite Blanket: A pink one with a worn tag that Aunt Jill and Uncle David sent to 'their little Lamborghini' during one of her hospital stays. (Dylan's doctor once compared her to an italian sports car, 'really fun to own, but really high maintenance.') Oh sure I have a lot of blankets, even a pricey 'Taggie' blanket that will do in a pinch, but for some reason, this is the one I get the most excited about.
Most ticklish spot: My belly.
Least favorite thing to do: Shower
Nearly Intelligible phrases: "Four score and seven years ago..." (you know the rest)
Tomorrow we will have a few people over for cake, ice cream and present opening. They each got their own cake again this year... we will see how that goes!
Yesterday Matthew and I ran over to Wheeler Farm to take a few pictures of our "toddlers." I just couldn't imagine taking Duncan to a studio, that would be quite the battle, and well... since Jill's kids were so good and obedient, why not? Well, he would NOT sit still, he was all over the place! Apparently we don't get out of the house enough? Dylan was very good, we said 'sit there please' and sure enough, she sat! Needless to say we only got one single shot of the two of them together, here are the pics!
Dylan happily waiting for us to leave for the photo shoot!
So, today we celebrate two years with the Double D's! Two years ago Matthew and I threw everything we knew and expected about babies right out the window. They aren't SUPPOSED to be that little, and for that matter, they aren't SUPPOSED to be slightly dented right? While doctors and nurses were frantically trying to stop the process set in motion 9 weeks too early, we were asked several times if we were worried or why we were not freaking out. Well, nothing's really up to us, what good is freaking out going to do? Nothing will change. So, during a very serious delivery, while getting lectured by a stern Dr. Rose, Matthew's asking the many people in the room what their role was, comparing them each to players on a football field and asking them not to throw the 'ball' to the floor when they do their touchdown dance. Dr. Rose was not amused, not in the slightest.
I love when blogging friends ask questions of their little birthday stars. While my little stars are too young, I will do my best to improvise, and answer in the way that I think they would.
Duncan:
Favorite words: Uh-oh (followed in quick succession by...) Oh no! Cheese, Crackers, Mommy and Daddy. Mom and dad hear each of these words probably 25 times a day.
Favorite Food: Candy, pineapple and chicken.
Least Favorite Food: Macaroni and Cheese, and pretty much anything else with noodles.
Favorite Toy: Anything with mechanical parts, like wheels, or switches... or some other random item dad either gave me or left laying around like a tool, or a nail, or a nut and bolt.
Favorite activity when we have company: Run around the house squealing and screaming because I am so excited that friends came to play!
Most ticklish spot: Under my neck, I lose all control.
Least favorite thing to do: I am game for anything! Does it involve candy?
Nearly Intelligible phrases: See you! See you later! Thank you. There you are! There it is! There you go!
Dylan:
Favorite 'word': I love to do raspberries, all. day. long. Sometimes I can make fun bubbles too!
Favorite Food: Food? Yuck! Who needs food!
Favorite toy: The Butterfly and the silly feeding tube. These small items followed closely by anything that makes music like the music bus we are borrowing and will have to give back at some point. Oh, and hats... I lurve me some hats!
Favorite Blanket: A pink one with a worn tag that Aunt Jill and Uncle David sent to 'their little Lamborghini' during one of her hospital stays. (Dylan's doctor once compared her to an italian sports car, 'really fun to own, but really high maintenance.') Oh sure I have a lot of blankets, even a pricey 'Taggie' blanket that will do in a pinch, but for some reason, this is the one I get the most excited about.
Most ticklish spot: My belly.
Least favorite thing to do: Shower
Nearly Intelligible phrases: "Four score and seven years ago..." (you know the rest)
Tomorrow we will have a few people over for cake, ice cream and present opening. They each got their own cake again this year... we will see how that goes!
Yesterday Matthew and I ran over to Wheeler Farm to take a few pictures of our "toddlers." I just couldn't imagine taking Duncan to a studio, that would be quite the battle, and well... since Jill's kids were so good and obedient, why not? Well, he would NOT sit still, he was all over the place! Apparently we don't get out of the house enough? Dylan was very good, we said 'sit there please' and sure enough, she sat! Needless to say we only got one single shot of the two of them together, here are the pics!
Dylan happily waiting for us to leave for the photo shoot!
Sunday, October 18, 2009
Busy Day!
What a weekend!
Matthew was generous enough to let me sleep in on Saturday! Dylan's still on a sleep strike although it's apparently it's only sleeping during the night that's the problem! So Matthew deals with her until he goes to bed (I have been sleeping for a couple hours usually.) Then I take over. Although he offers to have me wake him and go in, we figure pretty soon I won't be sleeping during the evenings anyway! Well, after I get up I decide to run a little errand with the family even though I am in no way fit to be out of the house, so I just stayed in the car.
Once I got home I decided that we needed the outing and Jill and I went to a little boutique that we heard about. It was no big deal... in fact it was a very small deal. But it got all of us out and let Matthew try and work on a few more of the items on his list that he would like to do before he goes back to work. Jill bought more bows for her unborn child (she's at like 85 now... but don't tell her I said that, she'll deny it...) and I bought some of the books that I regretted not buying at the Baby Expo the other week. I absolutely love kids books, there are so many great ones and Duncan loves reading and Dylan loves feeling so I am a sucker.
It was a gorgeous day and Jill has been planning to get her dad to take some pictures of her kids so when we left she was off to try and get a hold of him. I offered to take some quick pictures if she couldn't find him. On the way home Matthew called and said his sister was in a pinch and needed a quick sitter for her 3 kids, he offered... knowing I might have to go with Jill. He'a so brave! 5 kids! He can handle it though, better than I could anyway! He got lucky, Duncan was asleep long before I got home so that's one down!
I abandoned Matthew and 5 kids (two asleep) and took off with Jill for pictures. Her kids made me look good! The turned out really cute (if we do say so ourselves...), hopefully I will be able to get some cute ones of my kids like this someday. It would be hard if the one telling them what to do, coaxing, feeding them M&Ms and occasionally scolding them is the one behind the camera! It's really a team job!
After that Duncan and I took off to Shelly's for a vinyl party with a few of the gals from the NICU. Although I knew I was going (for months actually...) I had no idea what to get so I didn't get anything! Although, I think we decided on one for Dylan's room finally. I just wanted to see the gals anyway and Duncan was running around loving up their dog who was completely unlike our dog who avoids him unless forced to interact! I have a peeling thing too, as my mom will attest... I used to peel paint off the doors in the pink and purple house when I was really little and I still like to peel off wallpaper and the protective plastic thing off electronics. So... vinyl is FABULOUS! You get to peel off all the stuff that isn't supposed to be there (like the inside of the 'o's)! I think I could do that all day!
Big day yesterday, I think I will take it easy today... well, maybe for the rest of the day anyway!
I also forgot to mention in the last post that Duncan likes anything that he can put things in and take things out of. So... he especially likes it when I wear my pajama pants or sweats with pockets because he can put his hotwheels and other random small toys in there. So, I started planting sweet treats, like a swedish fish, or a candy corn for him to discover. He gets SO excited when his little fingers latch on to a mysterious hidden item, his eyes light up and he looks up at me with a HUGE smile on his face. Then he grabs it out and walks off holding the treasure in both hands. The very first time he found a candy corn, a new treat to him. He took a bite and looked up at me and said "NUM! NUM!" Something he says any time he tastes something fabulous (which is where I would categorize candy corn!). It's adorable and worth him fumbling around in my often empty pocket a few times a day!
I actually don't have any pictures of my kids this time, I don't know why... I just didn't have any new ones on the camera! So... this is what you get Jill and David's boys, Roman and Noah.
Matthew was generous enough to let me sleep in on Saturday! Dylan's still on a sleep strike although it's apparently it's only sleeping during the night that's the problem! So Matthew deals with her until he goes to bed (I have been sleeping for a couple hours usually.) Then I take over. Although he offers to have me wake him and go in, we figure pretty soon I won't be sleeping during the evenings anyway! Well, after I get up I decide to run a little errand with the family even though I am in no way fit to be out of the house, so I just stayed in the car.
Once I got home I decided that we needed the outing and Jill and I went to a little boutique that we heard about. It was no big deal... in fact it was a very small deal. But it got all of us out and let Matthew try and work on a few more of the items on his list that he would like to do before he goes back to work. Jill bought more bows for her unborn child (she's at like 85 now... but don't tell her I said that, she'll deny it...) and I bought some of the books that I regretted not buying at the Baby Expo the other week. I absolutely love kids books, there are so many great ones and Duncan loves reading and Dylan loves feeling so I am a sucker.
It was a gorgeous day and Jill has been planning to get her dad to take some pictures of her kids so when we left she was off to try and get a hold of him. I offered to take some quick pictures if she couldn't find him. On the way home Matthew called and said his sister was in a pinch and needed a quick sitter for her 3 kids, he offered... knowing I might have to go with Jill. He'a so brave! 5 kids! He can handle it though, better than I could anyway! He got lucky, Duncan was asleep long before I got home so that's one down!
I abandoned Matthew and 5 kids (two asleep) and took off with Jill for pictures. Her kids made me look good! The turned out really cute (if we do say so ourselves...), hopefully I will be able to get some cute ones of my kids like this someday. It would be hard if the one telling them what to do, coaxing, feeding them M&Ms and occasionally scolding them is the one behind the camera! It's really a team job!
After that Duncan and I took off to Shelly's for a vinyl party with a few of the gals from the NICU. Although I knew I was going (for months actually...) I had no idea what to get so I didn't get anything! Although, I think we decided on one for Dylan's room finally. I just wanted to see the gals anyway and Duncan was running around loving up their dog who was completely unlike our dog who avoids him unless forced to interact! I have a peeling thing too, as my mom will attest... I used to peel paint off the doors in the pink and purple house when I was really little and I still like to peel off wallpaper and the protective plastic thing off electronics. So... vinyl is FABULOUS! You get to peel off all the stuff that isn't supposed to be there (like the inside of the 'o's)! I think I could do that all day!
Big day yesterday, I think I will take it easy today... well, maybe for the rest of the day anyway!
I also forgot to mention in the last post that Duncan likes anything that he can put things in and take things out of. So... he especially likes it when I wear my pajama pants or sweats with pockets because he can put his hotwheels and other random small toys in there. So, I started planting sweet treats, like a swedish fish, or a candy corn for him to discover. He gets SO excited when his little fingers latch on to a mysterious hidden item, his eyes light up and he looks up at me with a HUGE smile on his face. Then he grabs it out and walks off holding the treasure in both hands. The very first time he found a candy corn, a new treat to him. He took a bite and looked up at me and said "NUM! NUM!" Something he says any time he tastes something fabulous (which is where I would categorize candy corn!). It's adorable and worth him fumbling around in my often empty pocket a few times a day!
I actually don't have any pictures of my kids this time, I don't know why... I just didn't have any new ones on the camera! So... this is what you get Jill and David's boys, Roman and Noah.
Friday, October 16, 2009
Cautiously Optimistic
I have waited to share this for weeks with the desire not to curse us... so before you read... can I get a collective 'knock on wood' from everyone?!
A friend from work and I always used to use the term 'Realistically Pessimistic'. We used it often, and we actually got quite a kick out of ourselves. Well... as a mom, one can't be pessimistic at all, even if it is the realistic kind. So, while mostly optimistic when it comes to Dylan, we are going to go with 'Cautiously Optimistic' with regard to her spasms.
Last you likely heard the number of them in a cluster was reduced, possibly due to the ACTH, to about 10-15. Well, the number started to creep up on us again and I think her dad got to 30 or so when he decided we needed to call and seek more meds for treatment. I talked him off his ledge though... Well, here's the big news of the week, we haven't seen any episodes from Dylan in a couple of weeks, maybe even three, but I am sooo not counting! This may not mean anything, as I have mentioned before her's are rather hard to catch... but this is definately the longest that we have gone without seeing any, I think the previous record was maybe 5 days? I didn't share this with anyone until last Sunday when someone asked, and then again on Tuesday or Wednesday maybe, and we still haven't seen any! Soooo... WOOO HOOOO (that's the optimistic), we hope (that's the cautious)! Before each episode she would get extremely interactive for a few minutes, it was almost warning they were coming... now she's that interactive and alert almost all of the time. We are loving it!
So Aunt Jane, you can quit picking on Trina for giving Dylan so many pokes, it actually might have worked!
Dylan's eating has been coming along as well, she had two days of really good eating sessions in a row. One she ate probably 2 ounces and the next day she ate 3.5! That's huge for her. Yesterday my timing wasn't quite right and she didn't do as well but we shall see how she does today!
Matthew's been off work since Wednesday (I say as he's been at work all morning at a meeting). It's been nice having him home, Duncan needed someone else to follow around and play with for a while. They like to go to the hardware stores together, and they hit Costco yesterday. It's always fun when Matt goes to Costco, it's like Christmas when he comes home! He's off fo the first couple of days next week too.
Duncan's trying to escape! Not good having him this close to a door knob, I do not want him to learn how they work!
Reading in Trina's new monkey jammies! (It was a really bright morning!) They are actually a little big, perfect for this winter!
Trina brought suckers over for Dylan to have during the pokes but Dylan wasn't all about them. She has changed her tune.
She ate this one almost to half which is good for her, she would previously take a few licks and toss it off and not want it again. Maybe she is like her mom and just likes the butterscotch!
A friend from work and I always used to use the term 'Realistically Pessimistic'. We used it often, and we actually got quite a kick out of ourselves. Well... as a mom, one can't be pessimistic at all, even if it is the realistic kind. So, while mostly optimistic when it comes to Dylan, we are going to go with 'Cautiously Optimistic' with regard to her spasms.
Last you likely heard the number of them in a cluster was reduced, possibly due to the ACTH, to about 10-15. Well, the number started to creep up on us again and I think her dad got to 30 or so when he decided we needed to call and seek more meds for treatment. I talked him off his ledge though... Well, here's the big news of the week, we haven't seen any episodes from Dylan in a couple of weeks, maybe even three, but I am sooo not counting! This may not mean anything, as I have mentioned before her's are rather hard to catch... but this is definately the longest that we have gone without seeing any, I think the previous record was maybe 5 days? I didn't share this with anyone until last Sunday when someone asked, and then again on Tuesday or Wednesday maybe, and we still haven't seen any! Soooo... WOOO HOOOO (that's the optimistic), we hope (that's the cautious)! Before each episode she would get extremely interactive for a few minutes, it was almost warning they were coming... now she's that interactive and alert almost all of the time. We are loving it!
So Aunt Jane, you can quit picking on Trina for giving Dylan so many pokes, it actually might have worked!
Dylan's eating has been coming along as well, she had two days of really good eating sessions in a row. One she ate probably 2 ounces and the next day she ate 3.5! That's huge for her. Yesterday my timing wasn't quite right and she didn't do as well but we shall see how she does today!
Matthew's been off work since Wednesday (I say as he's been at work all morning at a meeting). It's been nice having him home, Duncan needed someone else to follow around and play with for a while. They like to go to the hardware stores together, and they hit Costco yesterday. It's always fun when Matt goes to Costco, it's like Christmas when he comes home! He's off fo the first couple of days next week too.
Duncan's trying to escape! Not good having him this close to a door knob, I do not want him to learn how they work!
Reading in Trina's new monkey jammies! (It was a really bright morning!) They are actually a little big, perfect for this winter!
Trina brought suckers over for Dylan to have during the pokes but Dylan wasn't all about them. She has changed her tune.
She ate this one almost to half which is good for her, she would previously take a few licks and toss it off and not want it again. Maybe she is like her mom and just likes the butterscotch!
Tuesday, October 13, 2009
What's the plural of diagnosis? ...Take 3!
Time for an update! I met many of you who read the blog through the experiences I've had with Dylan, experiences I am so glad to have had and so many of you I have been so blessed to know! We meet new people every week too... and for you, here's the whole story of our little pickle.
Dylan was born at almost 31 weeks gestation weighing a very petite 2lbs 9 oz, she was 14.5 inches long. Through the normal preemie course, nurses tried to put a feeding tube up her nose and found that there wasn't any room. As a result of that, her nose became inflamed and closed off and she had to be intubated. They did a cat scan and found that her nares were very small(Pyriform Aperture Stenosis) and that she had a single central incisor together these things can be an indication of Holoprosencephaly (HPE). At this time, they ordered an MRI to confirm, but that came back inconclusive due to her prematurity. It's also important to note that all of my ultrasounds had indicated a normal brain, something which, looking back, I am so appreciative of.
We did genetic testing and found that Dylan's missing a part of her 7th chromosome (CGH micro array/combo, mega deletion of chromoseom 7q), the Sonic the Hedgehog gene (yes, it's named after that Sonic). It's a pretty important gene that is in charge of the development of lower spine, kidneys and brain. While still in the NICU they scanned her kidneys which are fine, and her back, which was not. Turns out she has a mild form of Spina Bifida. She has Sacral Dysgenesis which means some bones of her sacrum are missing (3 of the 5) and Sacral Agenesis, which means what she has left isn't formed properly. The bones split like they didn't come together right. She also had a tethered cord which means that her spinal cord was tied down at the bottom with a tendon that normally releases during fetal development. This spinal abnormality can cause stress and damage to the spinal cord as she grows. These back problems indicate bowel and bladder control problems both have been confirmed now, who knew going to the bathroom was such a complicated process! We will need to see a GI doctor soon to help get things straightened out.
She was in the NICU 89 days, half of it spent at Primary Children's which was where she had the Pyriform Aperture Stenosis repair. At not even 4 lbs she was the smallest baby that the ENT had performed that particular surgery on. After that, but while still in the hospital she got spinal meningitis. It was a rough little road to home, but she made it!
In June 2008 she got extremely sick with what we later found out was a bad infection. They did an MRI and found a nasty cyst on her spine, a result of the malformation. After several days in the hospital where she was very sick, they determined the best way would be to drain it, treat the infection with strong antibiotics and then resect the tissue at a later time. In August of 2008, after a month of IV antibiotics at home through a PICC, they decided to go in and resect the cyst tissue and untether her spinal cord.
While she was hospitalized they repeated the MRI of her brain and also did a 3d cat scan of her skull to check on her sutures. They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. Those 3D cat scans are very cool, I need to get those images on a disk to have forever. Not everyone gets to see their skull right? On her very first birthday she got her 4th and hopefully final in-patient surgery, a Cranioplasty to correct her forehead. This surgery had her in the hospital another 6 days! It's healed up almost perfectly although there are a few places that will require some adjustment later. You can hardly see the traces of the jagged incision that went from ear to ear across the top of her head.
Dylan also has a common heart defect that affects kids with chromosome abnormalities, an ASD. Some close on their own, however, her's is rather large so they expect that she will have to get it repaired with an out-patient surgery. Our next appointment with the Cardiologist isn't until she's 3.5! We will know more then.
We got the results of the repeat MRI in September 2008, this was a shocker! We found out that our little gal doesn't have a forebrain. This very important part of the brain controls a lot of your reasoning, personality, cause and effect, among many other things. In her case there is no separation between the two hemispheres of her brain which is what HPE is all about. The good news is that the Neurologist told us that if someone saw her scans and then met her they wouldn't know it was the same baby. So she's doing great. That's the amazing thing about brains, a lot of time the unused parts try to make up for what's missing so you just never know. At 2 years old she's developmentally at about 9-12 months.
With this MRI we also found that she has very small optic nerves but her eye sight doesn't seem to be impacted which is good. And, she has no Olfactory Tracts, so she might not have a sense of smell, we won't be able to confirm this for a few years though!
Dylan's not an eater so she got a 'button' in May of 2008 but she miraculously she started nursing when she was a year old! Unfortunately we had to stop this several months later so most of her nutrition comes via her button. We have been adding some solid foods to the mix and she seems to get better at eating from week to week as long as mom doesn't slack off on the practicing!
When Dylan was about 18 months old she started having spasms, short burst of involuntary movement. I did a lot of research on the good old internet and they looked to me like Infantile Spasms (IS) although not quite as severe as the typical ones. She got a few EEGs and although it wasn't the typical version, she did indeed have hypsarrhythmia, the cause of IS. Most kids with IS degenerate very quickly and Dylan was showing no signs of going backwards so we had some flexibility when it came to treatment. We tried a few things that didn't work before we started a grueling ACTH treatment which required a daily shot, this didn't seem to work either. Epilepsy is something we expected and we don't know what's to come in this regard so we will just hang on for the ride. UPDATE: The ACTH did work! Most of the time the IS stops a few days into treatment, not a week after treatment concludes! We still expect more seizures at some point, but this type was especially scary. We are so excited about this!
We also get to visit my cousin Trina at her office every couple of months because Dylan has Thyroid and Pituitary problems. We are giving her daily shots to help her be stronger and maybe even grow a little beyond her current not quite 15 pounds!
We have a cheat sheet that makes going to Doctor appointments much easier. Her file at the Pediatrician's office is 2 inches thick but our cheat sheet sums up her diagnosis, her medications and what her Pediatrician refers to as her 'large circle of friends', a list of all of her specialists. One older doctor that we saw once at the night clinic came in and said he would read up on her file but he was afraid he didn't have that much life left so he let me give him the synopsis!
As we approach her 2 year birthday we realize just how amazing Dylan truly is, when she was born we had no idea if she would ever move, learn, grow or interact yet every week we see incredible progress. Earlier this year she started sitting up on her own, then she started to army crawl and more recently she has actually started to crawl on her hand and knees! Although she is behind on speech development, with so much focus on motor development this isn't actually surprising. We will just continue to celebrate every single new thing that she does and not take anything for granted! She has really been a blessing in our lives and she is such a joy!
8-4-10 Addition: EGADS! So you know this is almost 10 months old and out of date?! I will be updating this in the next couple of days, I have to... this kids almost WALKING. Yup, I said it, WALKING. and she was just starting to crawl here? Please... crawling, piece of cake. =)
Dylan was born at almost 31 weeks gestation weighing a very petite 2lbs 9 oz, she was 14.5 inches long. Through the normal preemie course, nurses tried to put a feeding tube up her nose and found that there wasn't any room. As a result of that, her nose became inflamed and closed off and she had to be intubated. They did a cat scan and found that her nares were very small(Pyriform Aperture Stenosis) and that she had a single central incisor together these things can be an indication of Holoprosencephaly (HPE). At this time, they ordered an MRI to confirm, but that came back inconclusive due to her prematurity. It's also important to note that all of my ultrasounds had indicated a normal brain, something which, looking back, I am so appreciative of.
We did genetic testing and found that Dylan's missing a part of her 7th chromosome (CGH micro array/combo, mega deletion of chromoseom 7q), the Sonic the Hedgehog gene (yes, it's named after that Sonic). It's a pretty important gene that is in charge of the development of lower spine, kidneys and brain. While still in the NICU they scanned her kidneys which are fine, and her back, which was not. Turns out she has a mild form of Spina Bifida. She has Sacral Dysgenesis which means some bones of her sacrum are missing (3 of the 5) and Sacral Agenesis, which means what she has left isn't formed properly. The bones split like they didn't come together right. She also had a tethered cord which means that her spinal cord was tied down at the bottom with a tendon that normally releases during fetal development. This spinal abnormality can cause stress and damage to the spinal cord as she grows. These back problems indicate bowel and bladder control problems both have been confirmed now, who knew going to the bathroom was such a complicated process! We will need to see a GI doctor soon to help get things straightened out.
She was in the NICU 89 days, half of it spent at Primary Children's which was where she had the Pyriform Aperture Stenosis repair. At not even 4 lbs she was the smallest baby that the ENT had performed that particular surgery on. After that, but while still in the hospital she got spinal meningitis. It was a rough little road to home, but she made it!
In June 2008 she got extremely sick with what we later found out was a bad infection. They did an MRI and found a nasty cyst on her spine, a result of the malformation. After several days in the hospital where she was very sick, they determined the best way would be to drain it, treat the infection with strong antibiotics and then resect the tissue at a later time. In August of 2008, after a month of IV antibiotics at home through a PICC, they decided to go in and resect the cyst tissue and untether her spinal cord.
While she was hospitalized they repeated the MRI of her brain and also did a 3d cat scan of her skull to check on her sutures. They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. Those 3D cat scans are very cool, I need to get those images on a disk to have forever. Not everyone gets to see their skull right? On her very first birthday she got her 4th and hopefully final in-patient surgery, a Cranioplasty to correct her forehead. This surgery had her in the hospital another 6 days! It's healed up almost perfectly although there are a few places that will require some adjustment later. You can hardly see the traces of the jagged incision that went from ear to ear across the top of her head.
Dylan also has a common heart defect that affects kids with chromosome abnormalities, an ASD. Some close on their own, however, her's is rather large so they expect that she will have to get it repaired with an out-patient surgery. Our next appointment with the Cardiologist isn't until she's 3.5! We will know more then.
We got the results of the repeat MRI in September 2008, this was a shocker! We found out that our little gal doesn't have a forebrain. This very important part of the brain controls a lot of your reasoning, personality, cause and effect, among many other things. In her case there is no separation between the two hemispheres of her brain which is what HPE is all about. The good news is that the Neurologist told us that if someone saw her scans and then met her they wouldn't know it was the same baby. So she's doing great. That's the amazing thing about brains, a lot of time the unused parts try to make up for what's missing so you just never know. At 2 years old she's developmentally at about 9-12 months.
With this MRI we also found that she has very small optic nerves but her eye sight doesn't seem to be impacted which is good. And, she has no Olfactory Tracts, so she might not have a sense of smell, we won't be able to confirm this for a few years though!
Dylan's not an eater so she got a 'button' in May of 2008 but she miraculously she started nursing when she was a year old! Unfortunately we had to stop this several months later so most of her nutrition comes via her button. We have been adding some solid foods to the mix and she seems to get better at eating from week to week as long as mom doesn't slack off on the practicing!
When Dylan was about 18 months old she started having spasms, short burst of involuntary movement. I did a lot of research on the good old internet and they looked to me like Infantile Spasms (IS) although not quite as severe as the typical ones. She got a few EEGs and although it wasn't the typical version, she did indeed have hypsarrhythmia, the cause of IS. Most kids with IS degenerate very quickly and Dylan was showing no signs of going backwards so we had some flexibility when it came to treatment. We tried a few things that didn't work before we started a grueling ACTH treatment which required a daily shot, this didn't seem to work either. Epilepsy is something we expected and we don't know what's to come in this regard so we will just hang on for the ride. UPDATE: The ACTH did work! Most of the time the IS stops a few days into treatment, not a week after treatment concludes! We still expect more seizures at some point, but this type was especially scary. We are so excited about this!
We also get to visit my cousin Trina at her office every couple of months because Dylan has Thyroid and Pituitary problems. We are giving her daily shots to help her be stronger and maybe even grow a little beyond her current not quite 15 pounds!
We have a cheat sheet that makes going to Doctor appointments much easier. Her file at the Pediatrician's office is 2 inches thick but our cheat sheet sums up her diagnosis, her medications and what her Pediatrician refers to as her 'large circle of friends', a list of all of her specialists. One older doctor that we saw once at the night clinic came in and said he would read up on her file but he was afraid he didn't have that much life left so he let me give him the synopsis!
As we approach her 2 year birthday we realize just how amazing Dylan truly is, when she was born we had no idea if she would ever move, learn, grow or interact yet every week we see incredible progress. Earlier this year she started sitting up on her own, then she started to army crawl and more recently she has actually started to crawl on her hand and knees! Although she is behind on speech development, with so much focus on motor development this isn't actually surprising. We will just continue to celebrate every single new thing that she does and not take anything for granted! She has really been a blessing in our lives and she is such a joy!
8-4-10 Addition: EGADS! So you know this is almost 10 months old and out of date?! I will be updating this in the next couple of days, I have to... this kids almost WALKING. Yup, I said it, WALKING. and she was just starting to crawl here? Please... crawling, piece of cake. =)
Monday, October 12, 2009
Just nothing really...
We went to mom's for pizza with Aunt Jane and Uncle Dee on Saturday but we didn't stay too long. Dylan's still on a sleep strike and she was pretty wobbly on the floor. I think she practically fell asleep looking at Bob when he was holding her. It would all be fine if she would, oh, I don't know... SLEEP like a normal child. She'll just play in her crib for hours at night! She's not sad though, weird kid. She's like her dad, goes to bed late, needs just a little bit of sleep. Duncan's more like me, he likes his sleep but he's an early riser.
We had an Endocrinology appointment today and I was sneaky... they are upping her dose of the daily shot and I didn't bring the device in. I was running late, and you have to keep it cold so... I know we have a personal nurse that can change it for me! I only got in a little bit of trouble. Ha! Lucky Trina! Dylan had to get a poke and they have a lab in the office there, I warned the girl she was a tough stick but offered to have her take a look and let me know what she thought. She sent us up to Primary. Of course! So we went to the Lab at Primary and as I handed them the sheet I said "She's a tough stick for whoever draws the short straw!" She commented that that was good to know. Well, the girl got it first POKE! What!? I told her it had been a long time since they had gotten with one stick and I was going to request her next time! (Her name was Heather!) So it was bad, but not nearly as bad as last time (remember the wrist?).
I had already thought Dylan was probably high risk for H1N1 flu and that the flu shot was recommended, just because she's a broken little one, but turns out she's actually up there because of her Hypothyroidism. We really don't want her to have any breathing problems, she can only breath through one nostril already!
Aunt Ami had Duncan this morning and of course, he wanted nothing to do with me when I came to pick him up. He's such a good boy, so flexible, he will just play and behave wherever he is. I love it. I am really spoiled when it comes to him. Well, except for the occasional apple or Petroleum Jelly incident.
Dylan had her PT appointment today too, turns out Sarah's an OT (Occupational Therapist), Who knew? Sarah was commenting that there really isn't a time that she's come that Dylan's not been doing something new. She's been crawling in a straighter line, really no thanks to anything that I have been doing, she just figures it out. She just is making so much progress! Today she was kneeling up to the couch with the cushions pushed up to make it more he size, a precursor to pulling to a stand. She stood a little up to the couch too, but not for too long. It was pretty cute, she looked so big!
Look at those adorable demon teeth! I think they are so cute, but they might just be the kind of teeth you have to know her to love! She's not too big on taking a shower but bath time is even less fun for mom and dad so it's what she's stuck with. Her favorite part is the warm, no... HOT, towel after. Once we throw her into the towel she's nice and peaceful and happy.
When Dylan is getting fed through her tube she tries relentlessly to get the tube. Finally I decided to give her an extra one to play with and she chews on it all the time (I mentioned this I think, she folds it to get all those sore molars!) Well... here are some pictures. Her dad keeps telling her that her face will stay that way but she doesn't listen.
This was a funny angle, she's actually laying with her head on the pillow. I turned it because you can see her little 'walrus' face better! (Also, at the moment this is my favorite outfit... it's in many a picture, she wears it as often as it's clean!)
We had an Endocrinology appointment today and I was sneaky... they are upping her dose of the daily shot and I didn't bring the device in. I was running late, and you have to keep it cold so... I know we have a personal nurse that can change it for me! I only got in a little bit of trouble. Ha! Lucky Trina! Dylan had to get a poke and they have a lab in the office there, I warned the girl she was a tough stick but offered to have her take a look and let me know what she thought. She sent us up to Primary. Of course! So we went to the Lab at Primary and as I handed them the sheet I said "She's a tough stick for whoever draws the short straw!" She commented that that was good to know. Well, the girl got it first POKE! What!? I told her it had been a long time since they had gotten with one stick and I was going to request her next time! (Her name was Heather!) So it was bad, but not nearly as bad as last time (remember the wrist?).
I had already thought Dylan was probably high risk for H1N1 flu and that the flu shot was recommended, just because she's a broken little one, but turns out she's actually up there because of her Hypothyroidism. We really don't want her to have any breathing problems, she can only breath through one nostril already!
Aunt Ami had Duncan this morning and of course, he wanted nothing to do with me when I came to pick him up. He's such a good boy, so flexible, he will just play and behave wherever he is. I love it. I am really spoiled when it comes to him. Well, except for the occasional apple or Petroleum Jelly incident.
Dylan had her PT appointment today too, turns out Sarah's an OT (Occupational Therapist), Who knew? Sarah was commenting that there really isn't a time that she's come that Dylan's not been doing something new. She's been crawling in a straighter line, really no thanks to anything that I have been doing, she just figures it out. She just is making so much progress! Today she was kneeling up to the couch with the cushions pushed up to make it more he size, a precursor to pulling to a stand. She stood a little up to the couch too, but not for too long. It was pretty cute, she looked so big!
Look at those adorable demon teeth! I think they are so cute, but they might just be the kind of teeth you have to know her to love! She's not too big on taking a shower but bath time is even less fun for mom and dad so it's what she's stuck with. Her favorite part is the warm, no... HOT, towel after. Once we throw her into the towel she's nice and peaceful and happy.
When Dylan is getting fed through her tube she tries relentlessly to get the tube. Finally I decided to give her an extra one to play with and she chews on it all the time (I mentioned this I think, she folds it to get all those sore molars!) Well... here are some pictures. Her dad keeps telling her that her face will stay that way but she doesn't listen.
This was a funny angle, she's actually laying with her head on the pillow. I turned it because you can see her little 'walrus' face better! (Also, at the moment this is my favorite outfit... it's in many a picture, she wears it as often as it's clean!)
I have decided that showers with Duncan running around the house, while still productive, aren't very peaceful. I end up trying to watch him and tell him what to do from the shower. Not very effective. Well... I have it figured out, I can take a shower with him (while possibly less productive) and then when I am done I can get out and leave him in there playing with the water! It's fabulous! And a great photo opportunity! It gives me enough time to get out and ready without one or both of us freezing our toosh off.
Dylan did really well eating graham crackers yesterday. While on ACTH she didn't want anything to with food. In fact, if she had it once and knew it was food, she would toss it away and wouldn't even look at it again. She also hated being in the chair and not able to move. I am glad that's over. Feeding her takes a long time but I think she loves all the attention. She gets all chatty and cute.
Dylan did really well eating graham crackers yesterday. While on ACTH she didn't want anything to with food. In fact, if she had it once and knew it was food, she would toss it away and wouldn't even look at it again. She also hated being in the chair and not able to move. I am glad that's over. Feeding her takes a long time but I think she loves all the attention. She gets all chatty and cute.
Friday, October 9, 2009
More pregnant than ever!
That's right ladies and gents! As of 8:41 this evening I will be more pregnant than I have ever been before. I mean... not size wise, but length of time wise! Size wise when I had the kids I actually measured full term which means I have lots of growing left to do, especially if I am still measuring small. Anyway, what this means, is that if the Ultrasound was right on, my little person looks a little something like this right now...
Course it's quite possibly a cute little girl version of that too. (And, if we want to get technical, this was actually taken when Duncan was 5 days old, the first time we got to see that goofy face without those ugly CPAP tubes.)
Hooray for my body hanging in there, course this kid might have a placenta to contend with when it comes to finding the exit route... but still. I totally underestimated the impact, by way of freaked-outed-ness, of this day. I am a little wiggy...
So last night I got Pee'd on and Poo'd on... neither a first, but still. Here's the whole story... Duncan managed to get the lid off of the Petroleum jelly last night. Not at all a difficult feat, seriously, you would think they would make them a little harder to get in to? I mean, a screw on top would be a little less kid friendly and a little more parent friendly, but no one's apparently asking parents about these things. I noticed Duncan had something on his head, I thought it was lotion but at closer inspection it turns out it was petroleum jelly! Oh noooo!!! So I ran over to see what the damage was, it really was only a few minutes, I couldn't believe it.
In the whole scheme of things it wasn't too bad actually, no piles of goo on the carpet, nothing on the furniture or blankets... In fact, things looked pretty clear. But then I looked at Dylan... She had it all over her head too! Now, why Duncan thought it was shampoo for not only him but his sweet little innocent sister is beyond me! Luckily the only other gooey thing was the container!
Soooo... In the tub we go. I stripped him down and tested the temperature of the water since he likes to be in when it's filling up. At which time I feel something warm on my leg. He pee'd on me!!!
Now he used to pee on us all the time when we changed him, you could pretty much count on it. In fact, it was so predicatable that we used to pull the diaper back blow a breeze of cool air put the diaper back up and wait a few seconds. And then... there was the time where I went in for a closer inspection of his little circumcision... (on Suzie's recommendation by the way, thanks again SUZIE!) But should I really get pee'd on by an almost two-year-old? Honestly!
Then it was Dylan's turn. She poo'd on me, and in the water, and all over... but HOORAY for her own bowel movements right?! I know! Anyway, by the end I filled the tub 3 times... once before, once during and once after she exited the water, Duncan loved it. I washed his head with shampoo and then Soft Soap (because it was just there...) but Dylan I was little rushed. In fact, at one point she was screaming her protest so loudly that Duncan plugged his ears. It was SO cute! He's never done that before, and we haven't ever shown him or anything. Funny.
Anyway, when I got her out (and started to drain and refill the tub, time #3) I noticed she still had small chunks of it i her hair! I finished her, on the bathroom floor, put her in the living room and turned to deal with Duncan and bedtime. His head was still so greasy I could faux hawk it with my pick! Oh well! Once he was in bed I washed Dylan's hair in the sink with hand soap and dish soap, which she surprisingly didn't seem to mind, but this morning it was still so greasy it was SUPER easy to put in a pig tail, I just combed it up and it stayed put! What a very hectic hour of my life! However, I will take petroleum jelly hair over an apple in the nose any day!
We got spoiled with a visit from Aunt Trina again last night. It works out great, I trade produce that I don't like (this time tomatillos, last time eggplant) for cute outfits she randomly picks up for the kids! Boy do I have the better end of the deal there! I mean... eggplant?!
This morning we went to the Baby Day Expo for no reason other than to get out of the house. It was fun, lots of babies there that's for sure! Including one little dude that was only 4 weeks old and mom and grandma were just carrying him around. I guess I am probably paranoid... but that's to early to bring to a place like that, at the very least leave him in the car seat! Oh well, what do I know, I didn't leave the house until these guys were like 5 months old! (And truthfully, I don't mind so much either!) They had these funky rubber spoon things that I read about in Parents Magazine, I remember seeing them and telling Matthew I wanted to get them for Dylan and there they were! So Dylan got them... You let them play with them like a toy first and then you start introducing food on them. I also picked up a baby wrap since I realized the only way I would be able to go any where is if I 'wore' the new baby, I had already looked into and decided the type I wanted so when I saw them I went for it.
Dylan and her new funky rubber spoon (and greasy hair!)
Course it's quite possibly a cute little girl version of that too. (And, if we want to get technical, this was actually taken when Duncan was 5 days old, the first time we got to see that goofy face without those ugly CPAP tubes.)
Hooray for my body hanging in there, course this kid might have a placenta to contend with when it comes to finding the exit route... but still. I totally underestimated the impact, by way of freaked-outed-ness, of this day. I am a little wiggy...
So last night I got Pee'd on and Poo'd on... neither a first, but still. Here's the whole story... Duncan managed to get the lid off of the Petroleum jelly last night. Not at all a difficult feat, seriously, you would think they would make them a little harder to get in to? I mean, a screw on top would be a little less kid friendly and a little more parent friendly, but no one's apparently asking parents about these things. I noticed Duncan had something on his head, I thought it was lotion but at closer inspection it turns out it was petroleum jelly! Oh noooo!!! So I ran over to see what the damage was, it really was only a few minutes, I couldn't believe it.
In the whole scheme of things it wasn't too bad actually, no piles of goo on the carpet, nothing on the furniture or blankets... In fact, things looked pretty clear. But then I looked at Dylan... She had it all over her head too! Now, why Duncan thought it was shampoo for not only him but his sweet little innocent sister is beyond me! Luckily the only other gooey thing was the container!
Soooo... In the tub we go. I stripped him down and tested the temperature of the water since he likes to be in when it's filling up. At which time I feel something warm on my leg. He pee'd on me!!!
Now he used to pee on us all the time when we changed him, you could pretty much count on it. In fact, it was so predicatable that we used to pull the diaper back blow a breeze of cool air put the diaper back up and wait a few seconds. And then... there was the time where I went in for a closer inspection of his little circumcision... (on Suzie's recommendation by the way, thanks again SUZIE!) But should I really get pee'd on by an almost two-year-old? Honestly!
Then it was Dylan's turn. She poo'd on me, and in the water, and all over... but HOORAY for her own bowel movements right?! I know! Anyway, by the end I filled the tub 3 times... once before, once during and once after she exited the water, Duncan loved it. I washed his head with shampoo and then Soft Soap (because it was just there...) but Dylan I was little rushed. In fact, at one point she was screaming her protest so loudly that Duncan plugged his ears. It was SO cute! He's never done that before, and we haven't ever shown him or anything. Funny.
Anyway, when I got her out (and started to drain and refill the tub, time #3) I noticed she still had small chunks of it i her hair! I finished her, on the bathroom floor, put her in the living room and turned to deal with Duncan and bedtime. His head was still so greasy I could faux hawk it with my pick! Oh well! Once he was in bed I washed Dylan's hair in the sink with hand soap and dish soap, which she surprisingly didn't seem to mind, but this morning it was still so greasy it was SUPER easy to put in a pig tail, I just combed it up and it stayed put! What a very hectic hour of my life! However, I will take petroleum jelly hair over an apple in the nose any day!
We got spoiled with a visit from Aunt Trina again last night. It works out great, I trade produce that I don't like (this time tomatillos, last time eggplant) for cute outfits she randomly picks up for the kids! Boy do I have the better end of the deal there! I mean... eggplant?!
This morning we went to the Baby Day Expo for no reason other than to get out of the house. It was fun, lots of babies there that's for sure! Including one little dude that was only 4 weeks old and mom and grandma were just carrying him around. I guess I am probably paranoid... but that's to early to bring to a place like that, at the very least leave him in the car seat! Oh well, what do I know, I didn't leave the house until these guys were like 5 months old! (And truthfully, I don't mind so much either!) They had these funky rubber spoon things that I read about in Parents Magazine, I remember seeing them and telling Matthew I wanted to get them for Dylan and there they were! So Dylan got them... You let them play with them like a toy first and then you start introducing food on them. I also picked up a baby wrap since I realized the only way I would be able to go any where is if I 'wore' the new baby, I had already looked into and decided the type I wanted so when I saw them I went for it.
Dylan and her new funky rubber spoon (and greasy hair!)
Wednesday, October 7, 2009
Mama got a new toy!
I have this great trick. It's called "Dylan needs..." It allows me to get away with a lot of things, and buy a lot of toys. It's greats. It's like "Dylan needs me to have a new wardrobe, I just need to look good when I go out" and Matthew's like "Sure! Whatever she needs!" So when Dylan's Vision Therapist said that she needed a book of pictures of her favorite toys, I NEEDED a laminator to make it! I am telling you it works like a charm. I think anyone can used it on Matt to get what they want. Don't tell him I told you though...
So I made Dylan's cute little book of pictures. She LOVES it. Really, she looks at the pictures and reaches for the toy and everything. She can't be fooled though, if the book's next to the real thing she doesn't miss a beat in reaching for the real thing!
Dylan was actually quite good with the Vision Therapist yesterday. Linda even started to question whether or not she was needed because she was so attentive. She's back, our original little Dylan is back. As such, she's a bit more alert, definitely more delightful and more attentive to her surroundings and what's going on. She will allow you to hold her again and everything, we will see how she continues to do and how Linda works with her on things and see where we go from here.
We went out to Shane and Traci's this weekend to visit with Dad and Sharrie for a bit but Dylan kind of lost it toward the end there. Turns out she was stopped up again... I am not sure how to solve that problem. I will have to talk to her Ped again at her 2 year follow up and possibly see a GI who can help with her bowels. I can't seem to get the Miralax dose quite right and I have read that there are other options that mothers of other Spina Bifida kids use. Poor kid, she really hurts when she gets backed up. Miserable. Oh well, we solved the problem and Saturday she was fabulous again! I have been watching the last couple of days to keep things going so she doesn't get that sad again.
This morning I got a little spoiled, Dylan was on a sleep strike all yesterday and apparently she was awake in her crib half of last night so she slept in this morning. Not only that, after all, one sleeping in child just isn't enough... Duncan decided to get up at 6:40 but I told him it was still night time and to go back to bed, he did... until like 9:30! Woohoo! He normally wakes up around 7:30 so me getting to sleep until 9 and then being able to get ready alone was a BIG deal!
So Dr. Bean called the day after the 'apple incident of O-9' to see how Duncan was and see if there was any damage done by when he moved and she scratched him. I told her I almost stopped by on the way out but I knew they were busy that day so I didn't. She said "I wish you would have!" Because she said she felt terrible for an hour after and the nurse who was supposed to be holding his head felt really bad too. Turns out she was also working the night clinic too, and we were in for flu shots! I really wish I would have known, here she just calls me the next day to check in! It was really nice of her to check on him, alas, no damage done. I had Edible Arrangements send Dr. Gull a big cookie with an apple on it and a big 'Thank You', hopefully that happened, I am pretty sure they charged me!
If anything good came from that incident... it's all of the good stories I have heard!
Dylan's picture book
Duncan's flash cards... turns out I should have used thicker plastic, in about 2 minutes he folded the '7' in half and bit it. Ha! I ran it through again and it doesn't look too bad, funny. Good think I know where to get another one eh?
She's so cute, that back molar is still pushing through so she's mighty drooly and bitey still!
We had 'Mango Dessert' and some puffs today. She actually didn't do too bad, I need to get back into feeding her regularly and I am sure she will pick it back up again.
I put apple juice and water in this cup and she kept biting the top and drowning in it, yet REALLY complaining if I took it away. She was loving it! But gagging... So I put some 'banana porridge' (Really, Matthew brought it back from the UK for her) in there and it actually worked very nicely. That way she got a taste occasionally but wasn't choking.
Dylan Drinking... kind of...
Dylan eating... kind of...
This one's long... but I just think she's cute so I included it
So I made Dylan's cute little book of pictures. She LOVES it. Really, she looks at the pictures and reaches for the toy and everything. She can't be fooled though, if the book's next to the real thing she doesn't miss a beat in reaching for the real thing!
Dylan was actually quite good with the Vision Therapist yesterday. Linda even started to question whether or not she was needed because she was so attentive. She's back, our original little Dylan is back. As such, she's a bit more alert, definitely more delightful and more attentive to her surroundings and what's going on. She will allow you to hold her again and everything, we will see how she continues to do and how Linda works with her on things and see where we go from here.
We went out to Shane and Traci's this weekend to visit with Dad and Sharrie for a bit but Dylan kind of lost it toward the end there. Turns out she was stopped up again... I am not sure how to solve that problem. I will have to talk to her Ped again at her 2 year follow up and possibly see a GI who can help with her bowels. I can't seem to get the Miralax dose quite right and I have read that there are other options that mothers of other Spina Bifida kids use. Poor kid, she really hurts when she gets backed up. Miserable. Oh well, we solved the problem and Saturday she was fabulous again! I have been watching the last couple of days to keep things going so she doesn't get that sad again.
This morning I got a little spoiled, Dylan was on a sleep strike all yesterday and apparently she was awake in her crib half of last night so she slept in this morning. Not only that, after all, one sleeping in child just isn't enough... Duncan decided to get up at 6:40 but I told him it was still night time and to go back to bed, he did... until like 9:30! Woohoo! He normally wakes up around 7:30 so me getting to sleep until 9 and then being able to get ready alone was a BIG deal!
So Dr. Bean called the day after the 'apple incident of O-9' to see how Duncan was and see if there was any damage done by when he moved and she scratched him. I told her I almost stopped by on the way out but I knew they were busy that day so I didn't. She said "I wish you would have!" Because she said she felt terrible for an hour after and the nurse who was supposed to be holding his head felt really bad too. Turns out she was also working the night clinic too, and we were in for flu shots! I really wish I would have known, here she just calls me the next day to check in! It was really nice of her to check on him, alas, no damage done. I had Edible Arrangements send Dr. Gull a big cookie with an apple on it and a big 'Thank You', hopefully that happened, I am pretty sure they charged me!
If anything good came from that incident... it's all of the good stories I have heard!
Dylan's picture book
Duncan's flash cards... turns out I should have used thicker plastic, in about 2 minutes he folded the '7' in half and bit it. Ha! I ran it through again and it doesn't look too bad, funny. Good think I know where to get another one eh?
She's so cute, that back molar is still pushing through so she's mighty drooly and bitey still!
We had 'Mango Dessert' and some puffs today. She actually didn't do too bad, I need to get back into feeding her regularly and I am sure she will pick it back up again.
I put apple juice and water in this cup and she kept biting the top and drowning in it, yet REALLY complaining if I took it away. She was loving it! But gagging... So I put some 'banana porridge' (Really, Matthew brought it back from the UK for her) in there and it actually worked very nicely. That way she got a taste occasionally but wasn't choking.
Dylan Drinking... kind of...
Dylan eating... kind of...
This one's long... but I just think she's cute so I included it
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