Friday made for a very long day!

Duncan's having one of those days... I think yesterday was such a big day for him that he is just plum pooped out and not at all his cheery self. He needed extra cuddle time after he woke up and was acting pretty tired. I just put him down, and it sound like it's for good. Hopefully he will wake up on the other side of the bed!

We dropped Duncan off with LouAnn bright and early in the morning and then Jill picked him up from there. She also picked up a tag-a-long, Porter. So she had a house of four boys yesterday. She must have the magic though because for about three hours both Duncan and Noah went down for a nap. some call it lucky, I call it talent! I am sure Duncan was in heaven over there with all of those cars and trains. He really didn't seem like he cared at all to go home when the day was over.

Up at the Spina Bifida Clinic Dylan first saw the Orthopedics guy, he last saw her in April and at the time he said not to worry about her feet being pulled up in the front because it was how she was packaged for shipping (if ya know what I'm saying...). I think that he underestimated her low muscle tone at the time though because now he's saying that they are pulled up because she doesn't have much of an Achilles tendon in the back so the tendon in the front is 'winning'. It's pulling her feet out and up... and they need to go down in and in. So we are supposed to stretch her feet down a bit to see if we can help that. One foot is actually a bit worse than the other one. When she starts to stand and walk though he figured she will need leg braces to give her more of a walking surface. Heels don't make for easy walking... And then when she's 3 or older they might go in and snip those tendons to drop her foot down. Bah! Another surgery.

We saw the Occupational Therapist who was VERY excited about Dylan's progress since the last time she saw her. She was loving Dylan's use of her hands and the ability to almost sit up. She was very pleased which was good to hear. She suggested a couple of different spoons to try feeding Dylan with that we are supposed to ask Pat about. They are different as in, one apparently has balls? Some sort of texture that helps kids want it in their mouth. The other is a different shape so food comes off it more easily. Pat comes over today and we will ask he about them.

The Physical Therapist for the clinic seemed like he might have been a little sick so he really didn't work hands-on with Dylan, he just talked to us about her. He wants to take an electric kitchen knife to foam and modify a high chair so she's up and forward and she doesn't have to work to sit and play with toys. Then we entice her with toys she can't pick up, so she wants to play with them more and then we can put her on a wedge and taunt her with the new toy (okay, maybe taunt isn't the best word here, but you know...) and she'll roll over to get them. It seems very long and complicated but it has to do with her having motivation to roll over since she's perfectly happy laying on her back. So, I guess I need to talk to Pat about this too.

Paula Peterson, who is the brains behind the Spina Bifida Clinic (I think she's the NP?), always comes in and chats with us, we love her... We talked about Dylan's ridge on her head and sure enough, she went to hunt down the Plastic Surgeon who did the cranioplasty. She wanted him to come now so we didn't have to come back for an appointment. (And now you know why we love her...) He came in and he said that ridge is because he brain didn't move forward and push the bone out... which I don't necessarily believe because that ridge has been there since day one! But whatever, smart dude, I just nod and smile. He said it should get better by the time she's two or three but they might have to make a small incision and go in to shave the bone down a bit. So ack! That makes TWO additional possible surgeries. Bah!

The Pediatrician and nurse came to look at her bum and thought her rash might have a yeast infection but my Ped (who, as you know, I adore) already looked at it and didn't mention that as a possibility. The clinic Ped said it doesn't look like the typical infection but you never know and gave us stuff to put on it. I will talk to my Ped on Friday about it I guess.

I think that's it for clinic. That's fun enough right?

So then we went to lunch and came back for the blood draw. That was a quick poke, they didn't need much blood and they actually got it the first time... HOORAY! She did cry though, but not as hard as she cried for the VCMG!

So with the VCMG, they cath her and then put sensors around her belly and groin and then slowly fill the bladder with a liquid that shows up black on screen. Fortunately there were no signs of reflux to her kidneys (this is super!) and her bladder looked nice and round. Unfortunately they could only fill her bladder about half full (about 2 Tbspn) before she leaked so there's a serious muscle control problem. Possibly related to the Sacral dysgenesis and bowel control, and possibly related to her low muscle tone. Ya never know, but we have to do it again in a year! Boo Hoo! Dylan screamed the whole time.

We went to really cool toy store up on Highland. Toy stores are the best! They had all the cool wooden toys and specialty toys that I am sure make kids much smarter than the Fisher Price ones right? Okay, maybe not, they are probably more of mom's favorites than babies favorites but whatever. We picked up a few wooden puzzle kind of toys that are completely out of Duncan's range at the moment but one I saw at Primary and was just glad to have found it. They will work for later!

Michael and Megan got their wedding pictures back... as in... they are all uploaded online for them to look at. I might have snuck in and taken a peek but there were seriously so many I couldn't even go through them all (I have blogging to do people!). I did copy these ones over, I am definately going to order Dylan's and maybe the family one. Hopefully Matt might let me prepare the origional files for print because I liked us in the family one below, but I liked the horizontal layout a bit better so I might have to play with faces! Thank goodness for PhotoShop!

So cute! There were a few of Dylan that were super cute, but this one's my favorite.


This shows Duncan's eye infection really well! Look at that left eye!

Clinic tomorrow

So Dylan has the Spina Bifida clinic tomorrow and I have no idea who we are going to see. Ortho, dieticians, therapists... maybe a urologist? Who knows. We sit, they come. And then the VCMG in the afternoon to check on her little bladder.

The Synagis appointment wasn't too bad. Dylan has a terribly chapped rear right now and even the Dr. poked his head in to take a peak and give advice. I wish there was a magical cure but no go. Got the same old advice I already knew... She's a trooper though, Duncan's butt turned a teensy bit red last week and you'd think we were torturing him but hers looks 100x worse and not a peep. She's a good girl.

Also - her weight was 12lbs 5oz. So... tiny. Next week we have our Well-child appointments on Friday so we will see what her little curve looks like - if there is one. That will be another 'lady with two crying babies in a huge stroller' appointment since they get shots then too. Unless I can talk some poor chap into going with me. Shot appointments are no fun, no fun at all!

NEWSFLASH: Dylan is small.

So we went in to the Endocrinologist today and found out Dylie's small. I kid, we know she's small. She's actually lost weight compared to the last appointment which concerned the doctor until I told her how... ahem... rotund Dylan had been until she decided to eat on her own and only eat as much as she thought she needed compared to how much we thought she needed. Her weight is that of a 3 month old, and length is 5 months. She's just bitty! Course they say she weighs 12 lbs, the nurse the other week said 13 and the Ped's office said right smack in the middle. We will find out yet another weight tomorrow when they get their weight for Synagis.

Anyway... we have decided to give Dylan growth hormones since it appears as if she's not producing them herself. This is a very odd thing to have to think about you know? See, Dylie will not ever be like a 'normal' functioning child, so should we keep her little? Or help her grow big? It's so weird because right now, we don't know if we will have to carry her around, or lift her for the rest of her life (although we hope not and things definitely look like she will be mobile at some point) and if that's the case, well... she can't get bigger than me or we are in trouble! However... our Pediatrician (who is awesome) was talking about growth hormones having an impact on so many other things that we don't want to hold her back.

So, ultimately, at least right now... we are going to give her a little bit of growth hormone. Enough to help her body make more muscle and less fat but not so much as to help her grow big. Just this lttle bit will hopefully help her learn to do physical things a bit faster. So this means once a day shots. More on this in a month when all of the insurance stuff has been worked out.

I guess the good news is we got to visit with "Aunt" Trina. We have landed on "Aunt" because the more accurate second-cousin, cousin, or actually even nurse Trina don't roll of the toungue as easily as Aunt so that's what she is now.

And, on the way home Matthew and I had a great discussion about food storage since we have really been bulking up lately. He said the hard part is... and I cut him off because I know where he's going with this... the hard part is all of our friends and family that don't have food storage right? I know a lot of you probably struggle with this too. Well, ultimately he decided that we would pack up and all move to Kristen and Gary's and drink their swimming pool. Which I found hilarious and kind of disgusting but I guess some sort of solution. So now you know where to find us all should something happen.

Speaking of Synagis, I am tackling that appointment on my own tomorrow so feel bad for the lady with the huge stroller wheeling out the two screaming children around about 2:30 tomorrow afternoon, mkay?

Documenting Hurricane Duncan

On Friday we had a card party over here and that was a little crazy... Apparently the guys haven't done it in a long time so a lot of them showed up. At one point there were a bunch of guys, Becky and Jessica crowded around the table downstairs. No elbow room and watch your drinks! It was fun though... I used to retire at 9-10ish but the babies have me on crazy not needing as much sleep schedule and I stayed up until 3. 3!! I didn't mean to, all of a sudden Hoppy said it was three and I was like 'see ya!' and off I went to bed. It was so fun to see all the guys from work though. I miss the people the most!

Mom and Patty came over to watch the babies on Saturday when I ran into the NICU and I talked to quite a few twin mom's there. It was great and I am sure the kids were glad to see some shiney new faces.

Duncan was funny at the family get together this evening. When someone would try to get him to stand up he would scissor kick his legs up bent in the air so they would have to put him on his bum! He did not want to stand up thank-you-very-much. It was so funny. So much for showing off the new walking and standing skills right? And Ami mentioned that she has never heard him talk before and I was surprised, he really isn't quiet at all when we are here at home so he must just be too busy with the toys over there to do much else. It usually goes something like this...

Him: Da da da
Me: Ma ma ma
Him: da da
Me: ma ma
Him: Da
Me: Ma
Him: Da da da
Me: Ma ma

And you get the picture.

We have a ton of appointments this week! It's a year from when Dylie graduated from the NICU so all of those doctors that saw her in 6 months and then 6 months again are due! We have to go to the Endocrinologist on Monday (we will see Trina!), Synagis shots on Tuesday, the Physical Therapist on Thursday and then we have the Spina Bifida clinic and she has to get a VCMG on Friday! That will be a long day for her I am afraid. The VCMG is a bladder image that they will do to see if she has reflux to her kidneys and see if her bladder empties all the way. It's no fun, just ask my little neice Kali who had one last week. These poor little ones! Hopefully we will know a little more about her bladder control (or possible lack of it) after this appointment.

Matthew thinks he needs the computer so that must mean I need to wrap it up!

January centerfold


Dylan told me she was tired and I didn't listen. I was trying to get Duncan off to bed and I came back to this. She curled up and went to sleep on her own.


When what you have within reach is just not good enough. He is standing on a toy piano to get taller! This was crazy! And yes, I got buzz down for him before he crash landed on Duncan's head.


Documenting Hurricane Duncan. My day usually consist of picking up a mess similar to this one below several times. It's not about the toys, it's about dumping them and pulling them out one by one and moving on to the next treasure trove. Makes you want him to come to your house doesn't it?

If you aren't there, you are missing out!

There, of course being under the kitchen table. That's where the party is. It's the cool place to be, what can we say. Next time you come over you'll have to crawl under the table too. Oh sure, you might hit your head, often actually... but it will be worth it right? Totally! Here are some pictures of the latest parties.




So now not only does he get up on his feet but he edges himself accross the couch too! Nooooo! There's no holding him back now! Now that he's figured out the "one thing in front of the other" business he will actually 'walk' on his knees too... which is quite funny. I guess whatever works to get around. It's like all within a few days too! No fair! Okay, so he's a late walker, it was all part of my master plan, which is crumbling down now... bah!

Dylan has been continuing to eat, here are a few pictures of her with a spoon... course we weren't using the spoon, we are still using a syringe. I figured it couldn't hurt for her to start associating a spoon in her mouth with feeding time. The was only a few minutes ago and she did really well swallowing. Some days have been better than others and I would say this was a good one! Yay for plums! Imagine if it was a tasty treat! That's assuming she can taste things though which is still in question.



And smiling... so not hating the experience, this is good.




There's a baby in the NICU with Holoprosencephaly like Dylan, that's the first one I have actually heard of other than the obit that was in the paper when Dylan was only a few months old. No one has asked me specifically to talk to the family yet although it's apparently come up. I am sure I would feel comfortable talking to them but I am not sure if they are ready, my understanding is that they are still soaking it all in. Pat just mentioned her today so we will see what happens

Mom's coming to watch the kids on Sat so I can run in. My "poor me!" in the last post worked! She's coming to the rescue. It will be so nice, with Matthew working, teaching and helping so much. (I say as Duncan went down at 8 tonight and Dylie's sleeping accross my lap. Okay, I know I got it easy with these ones!)

That's about it, you don't want to hear about and I don't want to talk about my dentist appointment so I will wrap it up! Love to all!

I was reading on the enterwebs...

I have quite a few friends online. Most of them are people with children that have some kind of challenges, some great, some small... all different. It's our own little network, and we learn a lot from each other.... And we can freely talk about bejeweling our kids feeding tubes.

Well - I was online, with too much time obviously, and I was learning about a child whose mom I talked to quite a bit before Dylan's cranioplasty because her daughter had the same thing just weeks before. This little girl has a four year old sister and when her friends ask why her little sister looks different her response is "Oh that's just her... Isn't she beautiful?!" We need more of that four year old perspective don't you think?

The week before last I was told by Dylan's PT that I should try and feed her solids once a day. I tried, and honestly it was rather frustrating. She would spit right out whatever went in. Why then do we try? She's not eating, swallowing, practicing... Bah! So last week the PT tried to do it herself and boo! She understood why I was so hesitant, so now we are trying with a syringe. so we suck up the baby food and give her a little squirt in the back of her mouth and hope it surprises her and she swallows. She swallows her saliva, so we know she can do it! We are on day three and we might be getting somewhere but it's too hard to tell at this point. I just have to remind myself that we never ever expected Dylan to be nursing and she's a champ so we will just keep on practicing.

Duncan's pulling to a stand now. He did it once in his crib yesterday and all of a sudden he's doing it all of the time today. He saw Dylan on the couch, cruised over and up he came. Then in the cart at the store, the tub... he's all over and thinks he's soooo clever.

Jess is coming over again for Knitting Night #2! Wahoo! I need this little social activity since I don't get out enough! And Matthew's working on Suzie's basement again this weekend so yet again no NICU time, ack!

Dylie has enough hair to faux hawk, and it's stinker cute. I put a little bow in there... so sweet.


Both in the monkey jams from Trina, I tried to get good picture, even gave him the phone as a distraction but this is as good as it got. He's just too all over right now!


First bath without the chair and Duncan's delighted! He was all over the tub. A little too pre-occupied with the water spout for my comfort though so I need one of the safety covers next time I am out and about!

Two items of feedback

I got two pieces of feedback from my last couple of items. the first "Your thing about Blue Cheese, really?!" and to that my friends, I say yes... really. Apparently Jessica has liked it since she was 12 but since we tease her about not having a childhood anyway, this is not new news. Not that I think you're old Jess, I hope not anyway, seeing as how we are pretty close to the same age.

And the other was a special unexpected call from Grandma Shirley who said had she known that she was going to be famous she would have "gussied up" a little! I am not sure she was too happy about the pictures but I think she's beautiful and I told her so. I didn't particularly like the ones of me either!

A nurse from DDI (the Early intervention group) came over to visit Dylan yesterday and do her yearly evaluation. Apparenlty because she received gentamicin she is at risk for hearing problems. She got it twice too, once when she has spinal menengitis and the other with the infected sacral cyst! At the Neonatal follow up clinic they tested her hearing and while she didn't really pass with flying colors, she passed... enough so the guy tested her told us it wasn't time to learn sign language yet. Although we should, just to see what Sara's trying to tell Bert in secret at the next get together. Last time it was "Don't forget we owe them 20 bucks" and "It's about time to go" which is not all that exciting I guess. Anyway, Dylan tests developmentally at about 6-9 months which is better than I thought anyway so I am not complaining!

As the nurse was walking out of the house she commented on what a beautiful family picture the large one hanging in the entry way is. This would be the one before me... and before a bunch of others, including 12 grandkids. I commented that Bob, Matthew's dad, was killed and so we probably won't replace it because it's such a good picture and she said "Oh! that's my dentist!" Apparently she had been going to Dr. Bob since she was 22 and she's 51! She absolutely loved him (even though he always made her wait!) and has been dentist shopping ever since to try and replace her all time favorite dentist. It was kind of neat to talk to her actually.

That's about it, Dylan finally had her last two molars cut through, that makes 11 teeth for her and only 5 for Duncan. Remember when he had a bunch and she didn't have any? Too funny.

This would be Duncan, *in* the stove drawer, playing with lids from the next drawer over. He was eating them too. What can we say, baby saliva and dog hair, both a risk when you get something from this house, we'd like to think that it (whatever it might be) will be worth the risk.


Can you believe how quickly this bite is healing?? It happened on Saturday! not even a week and look at it. This was last night. Likely right before and right after I got after him for trying to get up on his knees in his seat.


And cute little furry Dylan. I tried to get a good one of Duncan playing with her in this thing and they never really work out. I am sure that he is who she's looking at inthis picture though.