"It's all my fault..."

Mike wasn't able to come over on Wednesday for Dylan's therapy session that we had scheduled. He called me while there was major drama unfolding in his car, apparently his son had decided that he did not want to go to school that day and wouldn't get out. So funny. So Mike was running late and then would be late for the rest of everything that day and we are flexible so we just post-poned.

I had picked up all the toys and the whole family was ready for the day at that point. (You know... if I have to rush and all because we have an appointment, we are all ready by 9-ish. Otherwise? Don't count on it. You just never know...) I had held Ian's breakfast off to keep him out of the way so he was just in the chair for breakfast. A perfect opportunity to work with Dylan. So I pulled the walker out and I am telling you, this kid is GETTING it. I was able to stretch the distance that she was willing to walk with the walker by a couple of feet. I didn't push it though, already very impressed with a weeks progress!

Later that evening Michael and Megan came over and brought us all dinner. It's budget review/revision time at Matthew's work and he's been working LONG hours... like, not home until 11:00 long hours... I asked if Michael wanted to see her in her walker and he did, and convinced me to pull it all the way back to the edge of the carpet to see if she would go for it. Lo and behold, she did it! She DID it! It took a little convincing to keep her hands on the walker but for the most part she did it on her own! 7 or 8 feet!!

YES!!!

When Mike tried it that day I did the video he pulled back like 5 feet and she decided he was nuts and that her way of getting there was much faster and more effective. But, in one week? WOW. Most of the work I had been doing the week hadn't involved the walker but rather getting her to walk to me, a couple of steps, with very little support from her hands to mine. Also having her walk holding on to my hands. She is getting so good!

I asked Ms. Shelly at school if they have had progress and she said they have seen some great progress and talked about how excited she was about it. Pretty incredible!

Matthew had the boat party on Saturday and had to go to Powell to work on the houseboat, which stinks. He left at 4 in the morning and wasn't back until 8. After him working such long hours all week I was feeling quite short with my lively three year old and when a morning shower didn't reset me I felt it best to leave altogether so we went to Grandma LouAnn's to hang out with cousins all day.

It was a GREAT plan because my little neice Lanie was born Friday (That would be neice/nephew 24 for me in case you are keeping track...) and people were in and out leaving their kids to see Lanie then staying and chatting. I even got to go visit Eden and Lanie in the hospital! Wahoo for holding tiny newborns right? She's a petite 7lbs and I casually mentioned that our baby would be here in a couple weeks and will eat her.

Although, while I was off visiting Lanie Duncan climbed all the way up on grandma's hutch and got in a wee bit of trouble. When he came down he said "I'm sorry, it's all my fault..." Apparently Mel and LouAnn looked at eachother, mortified, wondering what I did to my kid! "It's my fault..." is his new thing and it drives me crazy, he says it every time he gets in trouble! Ahhhh! When they told me I told them I usually wait until Matthew and I have a huge screaming match and then I stop in the middle and point at him and say "It's all your fault!" (Hopefully you are laughing at two things, a screaming match isn't likely... and neither is me saying that to Duncan!) Well, I got down to it today, and he got it from Thomas! Thomas is making me look bad!

We didn't get home until 4:30 - no nap for Duncan - but with my mom and Bob's assistance (they brought over dinner) some how I made it through the day without any small homicide incedences.

We have discovered that Ian's quite dramatic... it's very interesting. Jill tells me that he learns from his older siblings because I swear I don't remember Duncan being like this but my oldest neice Paige did it, so I guess if they are fit throwers they are just fit throwers. He will throw himself down, I have mentioned this before, but the other day the most hilarious thing happened! He woke up on the wrong side of the bed and was rediculously grumpy... like insanely, nothing I could do solved his problem. He was walking around crying and yelling and throwing his little body all over. At one point he threw himself down on the floor and then backwards and bonked his head. To which I did nothing, I mean, how silly is it to throw your own head down on the floor? He was completely insulted but apparently he learned a little something because not 5 minutes later I had the opportunty to watch another throw down, but this one was different. It was in slow-mo. I kid you not, the kids slowly sat down, leaned back, off to one side, then the other, gradually lowering his torso to the ground and then finally his head! It was a controlled fit is what it was. And it was hilarous.

We must not forget the pause in the yelling long enough to peek out and make sure people are watching. It's a very important part of learning how to do a proper throw down.

Duncan has taken to acting like a puppy lately (a talking puppy that says mom... he thinks that part is hilarious.) He will just look at you with the crazy face, that is clearly his 'puppy' face. I am not sure what he expects from me. I just pat him on the head and let him follow me around. How boring would that be? But he keeps doing it. Random.


In a step toward moving the boys into the same room together we recently set up Duncan's bunk bed! That means the bed that he was on, his big boy bed, has been hoisted way up in the air with another bed under it. However, brilliantly, his father left the bottom bed out. So it's a really high up bed with space under it for a train table (and the coolest 'fort' type opportunity ever!). He loves it!


I took this picture because it made me laugh - It's my set up for Dylan's morning routine! Every morning I run around the house gathering up all the supplies before I get started. Most days I get everything, occasionally I forget a random object forcing me to get my growing body off the floor to go fetch it, letting Dylan free, requring a recapture. This day Ian must have been roaming free requiring the routine to be done up off the ground. I could have chosen to do it in her room like usual, but then it would be accompanied by pounding and yelling at the door.


Just in case you're curious, every morning I gather:
Food
Tubie stuff - Tube, syringe, flush
Paper towel
Morning meds - Senna, Furidantin, Zongran, Lyvoxyl
Stuff for hair - Rubber bands, water, comb and hair spray
Cath and lube
Diaper
Wipes
Bum paste (usually but not always)
Her poke supplies - The gadget, a needle and a swab (Having already taken not of the poke spot)
Her button dressings - strips of tape and the usually forgotten guaze pad
Toothbrush with toothpaste
Onsie
Clothes for the day
Socks
AFO's
And then... finally, Dylan and something to keep her occupied for 25+ minutes!


The kids made alien slime in school on Thursday. It's some concoction of Borox and glue? Have you heard of this? It's crazy and Duncan was so very excited about it he had to pull it out of his backpack as soon as he got in the car to show me. Then it was out all day. He was so pleased he let me take a picture of him with it looking very excited.


Cheeser


Cheeser

What's the plural of diagnosis? - Take 5!

Time for another 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 (she has a mega deletion of chromosome 7q), including the Sonic the Hedgehog gene (yes, it's named after that Sonic). This area that's missing is pretty important, it includes sections that are 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 few abnormalities, 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 of her lower spine 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!

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. This surgery to increase the nares for breathing requires an incision under the upper lip, providing access to her skull. 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 10 very challenging days in the hospital where she was extremely sick (prompting me to start this blog!), they determined the best way would be to drain the cyst, 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 (She has microcephaly that was also diagnosed at birth). They discovered that her metopic suture, the one that runs down your forehead, had closed early which would need to be corrected. 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 now, 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, hers 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 are due for scheduling this appointment but are total slackers... I should know more soon!)

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. 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 almost three years old she's developmentally at about 9-12 months which is where we have been for a while, as various developmental areas catch up.

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!

She was diagnosed with CVI which is where the eyes can 'see', anatomically they are correct, but the brain has a hard time processing what it sees. Often kids with CVI tend to see something but look to the side to reach for it so their brain doesn't have to process too much at a time. They also use their peripheral vision a lot and hate the sun. Dylan received vision therapy for this through Early Intervention but when she graduated from EI her CVI was the lesser of the three levels that it could be and she didn't even qualify for vision therapy through her school. Yes! (But she still HATES the sun!) She was also diagnosed with Sixth Nerve Palsy, the muscles on the outer side of her left eye cannot pull her eye to the left so often her right eye turns in when she uses her left eye. They can work to repair this if it's a large problem but there is no loss of vision at this point and it's not worth the risk of her eyes working together in most other directions. (Unless, of course, she tries to get a driver's license... wink wink.)

She also has not passed a hearing test in her left ear for over a year or so. They want to do a sedated test but I know she can hear... so I am waiting until she's sedated for other reasons to do this test for the Audiologist.

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! She's also non-verbal and doesn't communicate with us orally, yet. I am not counting this out!

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, miraculously, these hard to treat seizures went away about a week after we weaned her from the medicine.

We were blessed to be spasm free for a year but then the buggers creeped up on us again. Because her development was still unaffected, and an EEG that wasn't typical for IS (but still very atypical), Dr. Neuro and his colleagues decided to be a bit less aggressive with treatment placing her on a medicine called Zonegran. We were to increase her dose slowly over three weeks but amazingly, the second dose amount as we were ramping up, seemed to take care of the spasms. Not only that, but there was a dramatic improvement in her attentiveness, responsiveness and eye contact! I think the recent occurrence of the abnormal brain activity had slowly impacted her personality but this medicine seemed to bring her back to us. Hooray for good medicine and awesome, inspired doctors!

We also get to visit my cousin "Aunt Trina" at her office every couple of months because Dylan has Thyroid and Pituitary problems relating to the HPE. We are giving her daily shots to help her be stronger and grow nice and big. They are working! She's definitely longer but she's still a skinny 22 pounder!

To battle the neurogenic bladder and bowel issues we have routines in place. She takes a natural herb (Senna) once a day to hopefully help her go to the bathroom once a day. (The previous treatment just made it easier to go, all. day. long.) It's been working very well but finding the balance of how much is rather tricky! Also, due to 4 or 5 back to back bladder infections (in spite of a daily antibiotic) we found that she is not fully emptying her bladder. We have to cath her 4 times a day, but since we started this process a couple of months ago she hasn't had any more breakthrough bladder infections! Just what she needed!

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!

When Dylan was born we had no idea if she would ever move, learn, grow or interact yet every week we see incredible progress. I think her favorite thing to do is defy the odds and prove silly doctors wrong. Although only a small percentage of children with her diagnosis are mobile, Dylan has continued to defy the odds in this area, she can "walk" on her knees! Doctor's are fascinated by this! They love that she 'gets' that moving one leg in front of the other will make you move forward! With the assistance of AFO's (Ankle Foot Orthotics) to support her ankles and lower legs she is starting the cruise along furniture ad we have had some recent HUGE successes in having her take steps with her walker! He legs do not straighten due to tight capsules but with the proper support she will walk, she will dance! All in her own time.

Dylan is adored by everyone she meets, but especially men... she has this uncanny way of wrapping them around her itty bitty finger. Our family has truly been blessed in so many ways by Dylan. We love her so much and love that she has the strength and determination to do anything she sets her mind to. It's a great example for us. She's amazing and we are one of the lucky families that gets to have a celebration of some kind nearly every single day.

Thanks for reading about our amazing little Dyl pickle!

25 things that make special needs parents happy

At least this one anyway... and specifically in regards to my little girl.

1 - Watching friends, cousins, nieces, nephews, siblings and more treat special needs kids awesomely because of the influence your child has had on them.

2 - Finding doctors and therapist that believe in your kids as much as you do.

3 - Realizing that when random strangers tell you how "lucky" you are to have a child strapped in a wheelchair because their kids are running wild through Target they really have good intentions... really. (This applies to other inappropriate random comments... And yes, it really happened to someone I know.)

4 - Watching something that doctors tell you will never happen happen.

5 - Then watching everyone who ever believed in your daughter say "I knew it! I told you so!"

6 - Realizing that it's okay if you don't do EVERYthing the therapists say you should be doing, every day (even if you aren't 9 months pregnant).

7 - Watching how much your kids love eachother and having your son ask "Where's Dylie?" When she's been in bed for two minutes.

8 - Having your special needs girl completely over-react and be dramatic (just like a little girl should).

9 - Being okay that your three year old still uses a 3 month old's binki, her teeth are never going to be anything other than perfect (for her) anyway right?

10 - Being able to celebrate the 'inchstones'.

11 - Having support from random strangers who you now call "family". (One of my "friends" did a shout out for extra 60 CC syringes, before I saw and could offer to send a box she had 25 responses from other "friends". A.maz.ing.)

12 - Realizing just how not alone you really are, bloggers, support groups, "friends". I love my "any-cephaly" family.

13- Finding your dog sleeping right next to your special needs kid's door. (Even though he's fallen down on the totem pole significantly!)

14 - Having your niece and other family members want one of these shirts (3elove.com) as much as you do.

15 - Having friends think of you first when they know someone who needs advice, needs support or just want someone to talk to.

16 - Having doctors say "We will need to fix it if she ever drives" and being able to laugh (and laugh at others who start laughing when you tell them!).

17 - Learning how to not compare your children to books, milestones, time lines or each other.

18 - Liking - Really liking the people who work with your children - teachers, therapists, nurses - and building lasting friendships with them.

19 - Knowing that someone has always been there before you and knowing that you're that person for someone else.

20 - Having your child be the one to give others HoPE. (Dylan's video of her taking a couple of steps made international 'news' when Alfred's mom posted it on her blog, in Swedish! You can see her post here, Google Translate is our friend!)

21 - Having your Pediatrician tell you that you're right, regardless of what the other doctors think, because you're a mom and no one knows their special needs kids like their moms do. (This does not apply to the other kids who I am nearly clueless about!)

22 - Watching Dylan clearly skip over her least favorite song (The Lone Ranger Theme) on her favorite musical toy. Cracks us up, every time.

23 - Finding out that you have more patience that you (or anyone who's ever known you) ever thought you would.

24 - Having random strangers come up and talk to my kids... all of them.

25 - Figuring out that you can handle anything that Heavenly Father throws at you (not that we are asking for it...)



Idea for this nearly stolen from Love That Max - You can read her list of things that make special needs parenting easier by clicking on the link. I decided to go with happy instead!

Something AMAZING happened!

Dylan took a few steps, unassisted... and, even more amazing, I actually got it on video!



YAYAYAYAY! Aren't you so proud of her?!

Mike is WONDERFUL! Super aggressive with her which is exactly what she needs because she's stubborn (me looking innocent) and smart and she needs someone to focus that drive that she has to never give up and to keep on trying. Oh yes, girl has drive, it's priceless!

In fact, when Uncle Michael started watching this video he said "I like this guy... he's aggressive." We wish we could afford to have him come every day! He's worth every penny we pay for him (and whatever insurance contributes, if I could get round to filing the claim). He's out of network, but obviously worth it!

And for the record, she's not going to me... she could care less about me. We have a beach ball, a alphabet noisy toy, her cow and a baby lined up on the couch waiting for her!

More videos below!

(Also - take a moment to notice Ian's big fat cheeser at the beginning of the video... think these kids are used to having the camera around?)

Matthew got back from his "vacation" to Mexico last Thursday, he was gone for a few days and I owe a big fat THANKS to Jenna and Eden for coming over at night to help out. (And their mom and dad for giving them the ride, which isn't a short one!) I really appreciate the help and company and Duncan absolutely loves to have them around to play with!

Okay okay, it wasn't really a vacation because it was for work and it was to Mexico City and not some resort town, but I still get to tease him. He gets an awful lot of 'vacations'! As it gets more and more difficult for me to get up and down off the floor to play/feed/change the little ones I have been noticing he's gone more and more! I do get to sleep in every weekend and catch up on my loss of sleep while he's gone and that's just DREAMY (literally!).

I figured out what Ian's doing with his ear... he's not gently playing with it. He pinches it! How do I know this you ask? Well because if you pinch your ear lobe it doesn't hurt, actually, you can barely feel it BUT, if you pinch most other places... say, your chest by your collar bone... it hurts. Bad.

Dylan's all better but Ian has quite the cough happening. It seems to all be in his chest but he's a gagger so he throws up too and we have to be careful. I have been slathering the boy up in baby Vicks under his footy jammies and it actually seems to be working at night. I feel bad for him though, the worst day he couldn't nap because he was coughing so much and he would wake, cough and whine... then sleep, wake, cough and whine again. Thank goodness he seems to be at least sleeping okay. He's actually on the mend too.

The speech therapist at Dylan's school came to the car to talk to me last Thursday and said she had such a great day! She said "She's just so happy!" and I was like YES! So she's noticing a difference in Dylan too. I love it.

Duncan and the iPad (aka:mommy's toy) We just got The Monster at the End of This Book and it's a GREAT book - Duncan loved the book and he loves the app!

Last night Dylan fell asleep sitting up - She has a horrible time breathing through her nose and this apparently worked for her. It's not a great picture... but you get the message. She was OUT too, I tried to pull her hair into a pony and it was wobbling all over so I ended up having to lay her down to do it! Night vision camera shot!


Ian's proud too! (This screen capture looks like Mike's going to slap Ian, but I assure you he's not...)


My baby has balance!


And - Parenting at it's finest...

Ian and the woobie

Have I mentioned the woobie? Maybe casually?

Because we didn't know the gender when we had Ian we posed quite the challenge for my friend Jessica - she had to come up with a color scheme to do all kinds of crafty things. She did a whole series of adorable black and lime green things, a knitted blanket (which is awesome..., I have claimed it as my own), burp clothes, a lap quilt for little people and... a minki blanket. The minki is double sided with a lime green trim.

A few months ago I noticed that Ian was really... REALLY fond of this blanket. I told Jessica we might need a back up. Smartly (or so I thought) thinking that we could switch them out, back and forth, until he had two woobies. So, for Christmas, while the big kids got ADORABLE hooded blankets (Michael wants to know why little kids get all the cool things) Ian got a back up blanket that's brown with blue trim.

I thought it worked! For a fleeting moment. I was wrong.

When Ian can bust into our room (where his crib is) he will book it right over to the crib and yank and pull that black blanket right out of the crib! (Yes, right past the brown one...) I felt compelled to make note of this today because I tried to take it away and walk out the room and you should have seen the FIT he threw! Because I didn't want him to take it with him!

I have good reason. He gets his little death grip around it and won't let go. So he tries to walk with it and falls all over the place because it's big, bigger than him and it drags on the floor. So he is constantly falling all over the place (more so than usual) and getting mad. But never letting the death grip on the blanket go!

He dives into it, and mind you, the thing is not very thick. Diving that noggin into a blanket that's not very thick makes for a loud thud on the hard floor! Yet he does it, over and over... he snuggles it.

He plays pee-a-boo, with no one in general, just keeps putting it over his head and taking it off.

The kid has a love affair with the blanket, I have never seen anything like it. (Well, maybe his Uncle David and "forkie" but that's just absurd... let's hope we can head off Ian before he's almost 30!)

I told Jessica we get an 'A' for effort... does this mean I can start snuggling with the brown one?

In other news, Dylan is doing GREAT. I mean, better than great... she is doing AWESOME. I wanted to retire the Nebulizer on Monday but she tried to take a nap and couldn't without making that horrible noise so I pulled it out again. The last time for this season, for all of the family, extended too... I hope. (Knock on wood, it sucked!)

She went to school yesterday with her AFOs on and I told Shelly she hadn't been wearing them while she was sick and if she got upset to pull them off. When I came to pick up the kids Shelly said that Dylan had a great day, she said she was very playful, very focused on faces and mimicking facial expressions. She couldn't believe how alert she was!

She noticed what we had noticed.

I think the seizure medicine has tamed our little gals brain a wee bit. Though it's been hard to tell is she's still having spasms because we haven't exactly been in our normal routine, we are seeing differences in other places. For a little while Dylan didn't have the same reaction to the iPad (as in NEEDING it) or her babies. She stopped talking to them and loving them up. Singing to calm her quit working as well. It's started again...

She wants to be with us, if I walk into the room and say "hi" to her she (knee) walks right over to me and puts her hands up. We can talk to her accross the room and make her laugh and smile while she's looking over at us. It's been a while... this is all kind of new. And I LOVE it.

Mind you, this difference in her lasted longer than her sickness. I really think the meds are making a difference. I left a message with this information for Paula, who knows they might think I am crazy, but both Matthew and I noticed and had talked about it before Shelly mentioned it.

So, until we see another spasm we are still holding off on upping the medication to the full amount. Here's to prayers that we don't see them, though we aren't exactly holding our breath here.

We aren't doing PT this week because of the sickness and the no AFOs but Mike will be back next week. We might have to have some crash course stair climbing and walking lessons before we see him again! Have to get her back to where she was!


Last time with the nebulizer - The sun was coming over the couch and we could watch the smoke. It looked much cooler than the pic shows.


He was pointing at the dog, who he thinks is very funny!


Not worth putting the blanket down...


He thinks he's so big... (shhhh, don't tell him he's not)


Death grip x2, ear and blanket. Walking... notice foot in motion.


Mommy thinks it's time for bed.

Boo to sick Dylans! It's almost over...

She's getting better, slowly but surely I suppose. Man... what a doozy of a cold! Ridiculous. The mucus was so think that she even started having a hard time breathing out of her mouth (when she figured out she should be leaving it open...). She would do this horrible dry honking, miserable noise... and she couldn't get comfortable enough to go to sleep.

Finally on Thursday I took her to get suctioned again, thinking that would help. She was in her car seat way in the back of the van honking and snorting and gasping the entire way to drop the boys off at LouAnn's. The cars in front of me couldn't move fast enough.

When I got to the ER (which is how you summon the Respiratory Outpatient Clinic), the lady at check-in was talking to someone else and Dylan let out (in) one of her horrible sounding gasping honks and the lady asked if she could breath, I assured her she could, but that we were there to get suctioned. At this point Dylan's head fell straight back, her nose to the air, she had her eyes closed but she was in a position that she could breath so... silence. The lady at the desk had one hand behind her on the big red phone and waited...

It dawned on me she was waiting for me.

Ha! I again assured her she could breath and she sent me to get registered. Once we got to the little ROC room they did the Pulse Ox and Dylan was 'satting' fine. She always had been. They took the tiniest tube (the largest they can get in her right side is a 8 French) and they shove that baby in her nose and down her throat trying to get her to cough up goo that they can then suction.

Eureka! It worked! Well... for about 15 minutes anyway. Boo! At home we moved her to the bed and it started all over again. Big sigh.

She seems fine and even quite happy when she's up and about but when she wants to sleep she can't breath. I am not sure why it works this way but frankly, it sucks. On Thursday night I realize that we might be able to take advantage of one of the nebulizers that we have in the family. We have saline for Dylan's nose, the single serving kind typically used in nebulizers, I made a call and we went for it. I thought I was brilliant, Matt was convinced I was giving her pneumonia!

It did seem to actually help, Michael snuggled her while we did it. Proof of it was her very non-swollen face on Friday! I think it really helped clear some of the stuff out even though she still couldn't breath through he nose.

Friday I made a call to the Dr. Ped to let them know I took matters in to my own hands and started with a nebulizer and I also sent a text to Trina. The Ped nurse thought it was a great idea and even told me to throw in ice chips because the cool air will make some of the inflammation go down. Woot woot.

She has had better nights but she was whining in the wee hours because I think she knows when she whines she can breath. Better... not cured.

Today she took a nice long four hour nap when I was either holding her or she thought I was by how I had propped her up on the couch with pillows and blankets. Every time she started to snort, or whine I was there to rub her little head and get her situated again. The gunk built up over the nap, but it was the best nap she'd had in weeks.

Progress. I have already lectured her about getting this sick on us again. Whenever she sleeps late and she's in perfect health Matthew and I have to reassure each other that she's breathing. That's amplified when she's having so much trouble doing so!

Duncan had a huge success on Saturday, he actually told us that he had to go on the potty (#2) for the first time ever! It usually involved us catching him the act (hopefully before any messes, but not always). So YAY! Good job Duncan! If we can keep this up I would appreciate it.

I added him to the baby's gender guesses, he's always thought that it was a girl in my belly. He's been pretty insistent about it. We frequently drive by the big hospital and the other night Matthew showed him the big buildings and explained that we get babies from hospitals. We asked him if he wasn't a girl baby or a boy baby from the hospital and he definitely wants a girl baby. Course, he thinks Aunt Megan's having a girl and she's having a boy, maybe he's just tired of being chased around by baby Ian!

He's been pretty cute, starting to play tricks and joke around with us. Santa (in a stroke of genius) brought him a clock that glows green when it's okay to get up. A sort of silent alarm if you will. It's not bright enough to wake them but it's quite noticeable when it's glowing. As I was tucking him in the other night I reminded him, "Don't come get us until the clock turns... what color?" He got a silly look on his face and he said "Uhmm... BLUE!" and went on with red and other colors before conceding that it was going to turn green. A sense of humor, gotta love it!

I forgot to mention Duncan's now a Sunbeam in church! Starting last Sunday instead of being in nursery for a couple of hours he gets to go to Primary for an hour where he has to, wait for it... SIT. That's actually rather humorous and I don't think it was very successful at this first run at it. He had to sit on a lap the whole time! One of our neighbors reassured us that it takes kids about 2 months of going to 'get' the whole sitting still thing. We shall see! Good luck Sunbeam teachers!

Ian's not talking yet. Instead he just points at whatever he wants. It works, would you talk? It's cute too so I forgive him for not saying mama yet! Oh, and don't tell him but Matthew's convinced he's a little person. You know, due to his *ahem* short stature and all. He's bustling around her on two feet looking very, well... short.

And, in an effort to remember all of the adorable things, Ian plays with his earlobes when he's tired. It started with his last ear infection but we know he's tired for sure when we see him reach up to play. It's so freaking cute! As soon as we give him his favorite blanket and lay him in bed one hand or the other shoots right up and we know we got the timing right.

Waiting for the stroke of brilliance that was the nebulizer on Thursday night. She was snugly... apparently so was Uncle Michael.


Friday, looking MUCH better! Finally.


And thinking about smiling.


Today's nap, she thought I was holding her... I was taking pictures instead. She fell asleep straight out of the bath so she had messy, but very shiny and clean, hair.


Ian learning the alphabet with the program 'Fish School', it's a good one! He loves the iPad. (Wow, who's HUGE belly is that anyway?)


At this rate he might read before he talks...


This would be Ian's funny face he like to make at everyone. This picture's actually a little blurry. sad day!


Still being cute, big HUGE baby teeth and all.


How can I have the camera out without taking a picture of this one (and, of course, showing it to him. He thinks he's pretty funny).


Ian thinks he can jump. He can't, but he has fun anyway.


An accident waiting to happen is what this was... at least they looked cute doing it!


One morning that I slept in Duncan and daddy made snowmen. Itty, bitty ones... but snowmen all the same.

The Rhinovius? That's IT?!

Dylan's got it... and she's got it bad!

Poor little girl hasn't felt great for about two weeks now, actually since we started the Zonegran, and you just have to love when you start a new medication and they get sick at the same time so you don't know what side effect is from what!

It got so bad on Saturday night that we ran in to the ER! She wasn't turning blue or anything, but she couldn't breath, even through her mouth (her nose has been plugged for days!). She was terribly congested. When we got there she her little ribs were retracting but they used the suction and I had a while new girl on my hands! It was AMAZING. They also did an x-ray to rule out pneumonia... we just wanted to start off the New Year (and the new deductible) with a BIG BANG!

They let us go with a script for the respiratory clinic for suction any time within the next 7 days. Hooray!

I called the Ped on Monday eagerly expecting some horrendous diagnosis and what did I find out? Rhinovirus! "That's IT?!" I couldn't believe it... But come to think of it, the Rhinovirus is actually what got us in to the doctor last year too. Her Ped did a goo panel to rule out the big stuff and, well... Dylan and the Rhinovirus don't get along very well!

So Rhinovirus, it's a cold... the common cold really, except it comes with a nice wicked fever. (When we left the ER she was at 102!). The goo lasts for a week to 10 days and the cough can last up to 4 weeks! 4 weeks!! (Which explains why my boys are both coughing... still, Duncan's had a cough for a month already!)

Monday morning Dylan woke up with a black eye. Did you know sinuses can give you black eyes? Put me on the list of people that didn't know this! Both eyes weepy... Tuesday morning weepy and gooey and bruised. I called Dr. Ped and they had me go in, the verdict? An eye infection as a result of the virus! So an antibiotic (hooray for antibiotics!).

She is in a bad way, though the rattling in her breathing seems a bit better. I can definitely tell when she's due for Ibuprofen too, she whines and moans. It's really torture... And when she looks at you with her adorable (sticky) eyelashes flapping at you and practically begs you to make her feel better? My word, heartbreaking.

I spoke to the doctor about the Rhinovirus too and he was saying that it's a virus that's really been moving up on the list of viruses that they get concerned about. He said it may be because it's more easily identified and they have tested more but they used to just lump it in with the common cold. With regards to "pain and suffering" it's become far more important than ever thought. Interesting!

I told him between the diaper changes, cathing and potty training I have never been so healthy in my entire life! (Knocking on wood!) Dr. Ped remarked that he's the most healthy person in his family in spite of him being 'in the line of fire' because he also washes his hands far more frequently than most people.

As far as the spasms are going we haven't seen many but she's not exactly awake and around us as much so who knows. Per Dr. Neuro, some illnesses make seizures worse and some make them better! I hope it's not the illness and there really are fewer! We are not upping her Zonegran to the full dose this week because she's so sick, we are waiting until she gets better... we might not have to up it at all! (Knocking on wood again!)

Ian
My boy, who I was convinced had an ear infection busted through four molars and one little tooth on the bottom front in the last couple of weeks! That explains the discomfort.

He's also a pro at walking, he turns mid-step and no longer looks like a baby orangutan while he's walking around! (You know, both arms up to balance.) He's very proud of himself, as he should be... walking's hard! Just ask his big sister!

Duncan and his '-isms'
We were watching a little thing on TV that he liked where these birds hatch and start singing together and he said "Look mom, they're catching!"

He always, ALWAYS says "What am I gonna do mom? What am I going to do?" When he's just trying to ask how to do something or if he's having trouble getting something done.

He told Matthew and I both yesterday, though at different times "I laugh and laugh and laugh and laugh and laugh mom!"

He's taken to saying "Oh my gosh!"

His "I didn't do it" is more like "I did n dant do it!" hard to write that one out!

Not much going on with my big boy. I am going to go in the poor house supporting his poop for a train prize habit if he doesn't master it soon.

He was MORE than excited to go to school today after his Christmas break, I hope they were glad to have him!

New baby
Went in to the doctor Tuesday for my regular appointment and my sister in law Eden was in the room right across the hallway. Her appointment was shortly before mine. However, I was in the room with the ultrasound... when the doctor offered a peek at the baby of for me to run out and catch Eden I opted to see the baby! No offense Eden, but I see you all the time and we already had plans to rendezvous over the girl clothes at LouAnn's after the appointment!

Cute little baby! (If I do say so myself!) The pictures printed from the old machine don't look as good as it does on screen but this little one has an Ian face! It was fun to see and per my request, we steered clear of the bum area!

Since Eden's baby girl is due the end of February we split up the girls clothes so she could get cracking at the nesting. I have a bin of very pink newborn clothes that I am not exactly sure what to do with at this point... I might be dropping them off on Eden's door step come February 19th! We shall see!

I couldn't have her on me, she was HOT, we were HOT... so I tricked her with blankets, pillows, sweatpants, whatever was handy that I could form into the human form! This was the night before the black eye.

Tuesday morning at the doctor...

Baby face