When Duncan thinks he's dying and more

Matthew took Duncan on the family trip to Lake Powell this last week and I stayed home with the three littles. It worked out great. Since most of my time is managing the two older boys fighting each other it was almost even peaceful! The boys got back a day early from Powell arriving late Monday night instead of Tuesday afternoon. We missed them!

Asher was a big old mess last Thursday, he was so sad, and he looked just terrible so I decided to take him to the doctor to make sure nothing too bad was wrong (I should mention three cousins just had strep!). He had a terrible fever that I was watching all night and Ibuprofen just wasn't cutting it. That is not typical for my kiddos, and we had no Tylenol in the house! His cute little skinny body looked adorable in just a diaper sleeping next to me though. We went and the NP said his throat had all kinds of blisters all over the back of it and it was either hand, foot and mouth or Strep. While Asher is a little young for a Strep test they decided to do one anyway. The NP said she was shocked the test came back negative because it looked so bad. Poor baby!

She gave me a script for a compound mouth wash that has four ingredients in it. I was to slightly water down and spray in the back of his throat to numb the sores. So I had a bit of running around to do while finding someone who would mix this up (took way too long...) and Target finally worked for us. BUT, that also took way too long. I am not sure I want to go in Target again for a LONG time! Managing grumpy, hungry kids in a store for that long? Bad! Dylan was even getting impatient and trying to stand up in the cart!

Cue a call from Matthew from Lake Powell, talking about how sick Duncan was and how bad his throat hurt. Duncan's a... well... okay, I will just say it... he is a bit of a wimp. So I can only imagine what his company would be like if the back of his throat was covered with blisters! So I told Matthew to check the back of his throat and it's just a virus so they have to just dope them up and ride it out.

When they got home from Lake Powell I was ready to send Duncan back! You would think the kid was dying, DYING every time he swallowed! So just in case it was strep we headed of to the Doctor again to have him checked. Strep was negative and there were two, TWO blisters that the doctor cold see. TWO! And Asher's throat was covered??? Really?? Apparently my sisters looked and said they had seen a couple so stop giving him the benefit of the doubt here and thinking they just wet away! (Yea, I know you were doing it.) Oh my word. Meanwhile Asher is fine and last night every time Duncan woke up he was screaming bloody murder waking everyone in the house up because it hurt to swallow. Please tell me he will never get sick again... please? Give me a break! And my sweet, adorable husband is just way too nurturing for Duncan's own good!

We are needing to start the new seizure medicine Depakote because Dylan is having spasms kind of regularly again. Bummer, but we were ready and it was bound to happen. I called and we have to get a baseline measurement on a few things, including liver function, since that's what Depakote can effect. So there I was, with all three of my littles headed up to the Children's Hospital! Thank goodness for handicap parking, we only use it when we really need it and this qualified! I used the old stroller because I needed to strap them in while I was tending to Dylan so Dylan was in the front and I laid back the back seat and buckled Asher in then slipped Ian in behind him. (Just an FYI here do not pull Dylan out first when they are like this because it's a little back heavy and whoopsie! Back it goes! Tipped back stroller ad two cute boys wondering why they were all of a sudden on top of each other! Hope no one was looking!)

Dylan was good for her draw, she got mad, but didn't really cry cry. Thankfully they got it in one poke! Yes! Her right arm is her lucky arm!

After the lab it was taking Paula a bit of time to get back to me on the meds. Hmmm... She was leaving me messages that she was working on it and had to talk to Dr. Neuro to make sure they were going to go forward as planned. So when I finally talked to her, just yesterday, she said Dylan's liver numbers were a little high. She said normal was 5-35 and Dylan was at 45. I am not sure what this means. She said it could be Dylan's baseline though and 45 is a lot different from, say 135, so slightly elevated isn't a huge issue. This forced me to wrack my brain on what Holoprosencephaly had to do with the liver since I had Dr. Ped order a liver test early on because I had read something about it. I found what I was looking for, it's not Holoprosencephaly that is the issue for the liver but rather the missing SHH gene. It can cause fatty liver, something in that gene protects the liver. So I also passed on this information, causing Paula to also probably have to place a call to genetics.

She talked to me about the Depakote sprinkles but because Dylan is tub fed, it's not a good match because it can clog the tube. There is a suspension but you actually have to give it four times a day (FOUR!), not great, but not a huge issue, we would do it if we needed to. She is also looking into whether or not a time release capsule can be crushed and given through the tube. So we are on hold here and have Paula running around for us again.

Okay - Before I could get this published she called back and we have a plan. We will be getting the pills and crushing them. We will be increasing the dose slowly after five days at a time and we will be going back to do the labs and check her liver and levels on the 24th. Once she is established on this we will start weaning her from the Zonegran. Hopefully one of my sisters will be available to watch the boys when I take her up there, three was fine once... let's not push it.

Dylan had an appointment with Dr.Endo on Tuesday. I was a little afraid that Matthew wouldn't get back from Powell on time to take her and I would have to take all three but phew! So he took and as usual, I have no idea the full extent of what was said. Love not going, don't love not knowing. Apparently her growth has slowed since we stopped giving her her daily poke of growth hormone. Matthew said I am getting my wish that she is small. Woohoo.

I guess there is some concern about muscle mass and her getting chubby without the steroid shot to help with building the muscle but she is doing superbly well in the weight area right now. (Woo hoo! Always a struggle with tube few kids! Managing weight!) She has finally crested 30 lbs and weighs in at a whopping 30 lbs 6 oz. Not too shabby. She looks good too. We are hoping that, because she is so active, we won't have an issue with her chubbing up. This also makes me happy because I try to squeeze in a little food at night to help with her weight since we haven't been able to increase he food for months! She is still not on the 'typical' charts for a 4 year old. This is SO okay by me! Her BMI is the highest it's ever been on the toddler chart at 16.4.

No labs either! A concern of mine since I had just taken her in to get a draw.

Dylan had school on Monday but Duncan stayed home on account of, you know, him dying and all. But I think he will be able to go on Wednesday. He was a little sad to have missed it. I guess Dylan had a good day at school and apparently I shocked Ms. Debi who had no idea I was pregnant. I guess that would be a shocker... maybe the last time they had school a couple of weeks ago she just thought I was having a fat day?

This is blue... of blue, black and brown fame. He has to have this or black at all times... it's driving me NUTS! Really. He will stop in his tracks and go "Booo!" Like, how dare we go on with our lives not knowing where blue is?!

Ahhh, toilets...

I suppose it was bound to happen... Something got flushed down the toilet. Something that doesn't belong in the toilet!
Asher makes a mad dash for the toilet and the dog water any time he sees the appropriate doors left open. I mean, mad dash. One year olds are surprisingly fast. He will play and splash and have a great time, much to my horror. One day Duncan told me he pulled a few things out of the toilet and left them on the counter for me. Toys, like some legos and a cup and a car. There were four things that day, if I remember correctly. And there were a couple other occasions. So now we know not only does he like to play but he likes to put things in the water. Yay!

Good thing he can't flush and I have trusty little Duncan to let me know when something is in the toilet that doesn't belong.

So last Tuesday Duncan tells me that he pulled a sock out of the toilet and left it on the counter. Sure enough, he had. a gross soaking wet sock. Thanks Duncan!

When Matthew got home he went to use the facilities and realized that the toilet was flushing slowly. He could hear the water going through and indeed it would flush, but at a trickling pace. He asked me if anything got flushed and I told him I didn't think so because Duncan had pulled out a sock so I don't know why he wouldn't pull anything else out if it was in there. Matthew, ever so trusting and giving Duncan the benefit of the doubt, thinks maybe something slipped under and Duncan couldn't see it but definitely do not use that toilet.

We then asked Duncan, again, (who was quietly playing Legos at the table) if there was anything in the toilet other than a sock and we got a very blank stair. And a "maybe one of these..." but then a very blank stare again. Not sure what to make of this...

This brings me to another story. When we finished the basement in this house it came down to choosing a toilet. There is quite the variety of toilets out there so after many visits to the home improvement store and much time spent contemplating Matthew asked my opinion. He made me go TO the store. I don't care about toilets!! Turns out I did... There were toilets in the store labeled "comfort height" because they are a few inches taller for taller people I guess. So all of a sudden I do care... I told him "Get whichever toilets you want as long as they aren't those 'comfort height' toilets!" So what does he come home with? Yep, three very tall toilets. Not only one for downstairs but he brilliantly decided to replace every toilet in the house. Yay! Do you know that I am short? My feet don't touch the ground when I sit on the toilet (not kidding) not to mention we have lots of kids to potty train that will now have to stand on a stool to void until the ripe age of five. (To this day he claims he never heard me say I didn't want them!) FYI - During this ordeal, Michael admitted his feet also do not touch the ground! Comfort height my patooty!

Back to where we were... and me excited at the prospect of a new toilet! (This time I WILL have more of a say!)

So at about 10:00 at night Matthew turns off the water and pulls the toilet. Thank goodness for handy husbands! I can't imagine having to call the plumber!

He found the problem... and no, it was nothing that couldn't be seen. It was a Duplo block, but not any Duplo. An EIGHT by TWO Duplo! A big long one! Like... long. So it was stuck in the back of the toilet where the water bends and curves. ARRRGGGHH!

Yay teamwork right? At least my boys can work together! And sad, no new toilet. Just a new $1 wax ring.

That is about all of the excitement for this week!

This weekend Matthew and Michael spend all of the waking hours over at Shanon and Tracy's house putting in their sprinkling system. Woo hoo right? What a way to spend a couple days in the hot HOT sun. They really took one for the team!

I always planned on not marrying a golfer because they are gone all day any time they possibly can. And I knew I didn't want that so yay, Matthew! No golfing! It didn't take me long to figure out that even if they don't golf they tend to fill up all their free time with something. For Matthew that is, most of the time, helping other people. He is so great, very willing to help anyone who needs help with anything they need, regardless of what he might have been planning. So, yes, with short notice... I was out a husband for most of the weekend.

I did, however, gain a Megan and she picks up all the toys on the floor when she comes over which I think is pretty dang awesome. See, she doesn't charitable service too!

In fact, we had the opportunity to watch Owen and Asher fight over Dylan's toy vacuum cleaner. It was pretty great since they are both so little and cute, and demanding! To be fair, Owen did have the vacuum first but the yelling and pulling back and forth was too cute to resist! We laughed at them for a few minutes and then Megan distracted Asher with a different toy, to which Owen noticed, dropped the vacuum and came running over for the new toy.

Dylan has been crawling in her bed to fall asleep more and more these days and it's adorable every time it happens because it's such a surprise. More often than not she passed out right in the middle of the floor somewhere but I love it when I peek in and she has passed out in her bed. She knows where she is supposed to sleep! It's the cutest thing ever. She has been such a doll lately wanting to come see people and smile at them. I was foot mopping the floor the other night and she was following me around everywhere trying to get my attention.

It's been such a slow week I don't even have any pictures! My bad!

Boo to Asia!

Wow! Big slacker on the blog eh? With good reason! My loving, kind, nurturing husband ran off to Asia! Fortunately that's the name of a place, and not a woman right? He was gone for a while entire week and I have just been wallowing in my sorrow and not blogging at all. Boo hoo. We like it a bit better when daddy is home, not only is he SUPER helpful, he is a likable kind of guy! Make no bones about it, I wouldn't have this many kids this quickly if he wasn't a fantastic partner. So when he is missing? Oye.

I had a bit of relief though. My sisters and mother-in-law took Duncan swimming a couple of times. They picked him up and made sure he was a fish and not a stone and he LOVED it. It was good for him to get out of the house for a little bit. Melissa also brought me fuel one night in the form of a slurpee and my mom and Michael and Megan brought over dinners.

Really funny, when my mom got here the boys came up from down stairs. Both mom and Bob were behind the couch and Duncan went one way and says "Grandma!!!!" and Ian went running around the other "Papa!!!!" Later at night my mom took a butter knife away from Ian and he flopped to the side in her lap with his arms straight up. He was looking around, looking very angry and quite pitiful. Then he heard Bob's voice and he said "My papa..." Sadly. Like, come save me, grandma is so mean. He is very clever. We are in trouble with him.

Ian continues to be pretty dang incredible with his letters. We were in Walmart and he said "P, r, i, c, e" from the sign, little letters and all. Part of it is the iPad, it's a game changer as my mom says, and part is that he LOVES the show Super Why which is a kids show on PBS. For Duncan it was Wow Wow Wubzy and for Ian it's Super Why. He would watch it all day long if I let him. They go through the alphabet a lot and they spell words, learn rhyming and some sounds. He is all over it. It's no excuse for watching TV or the iPad, but I guess if he is going to do either they should be educational while they do it. I have said it before though, I will say it again, some kids like cars, trucks, tractor or dinosaurs... that kid just loves his letters! random!

Catching up a little, we did our third annual Front Yard of Fire on the fourth of July. It's a night where we potluck (like usual family events) Matt fired up the grill and he spends a ridiculous amount of money on things you light on fire that take all of a few minutes to burn out. He loves it. He loves to entertain. Yes, I read everywhere how irresponsible it was to be lighting fireworks when there are so many fires around this season and we decided to be completely inconsiderate of fellow man and go for it anyway! We were punished.

Toward the end of the show one of the fireworks tipped over and started shooting things right into the crowd. Everyone grabbed kids and went running. Nothing was going to light on fire but there were a few surface wounds... not to mention a nice big dry patch on our lawn. Needless to say for the final two fireworks the men took the advice that one of the city fire marshalls had given on the news that morning and propped the fireworks up with bricks. (Yes, this information had been passed on earlier, but really... do you think they would do it right of the bat? No. Of course not.)

Asher was being so crazy trying to run all over and get in the way and play with fire that during the show I actually penned him up. Yea, I totally did. I went and got the pack n play for him to chill in and surprisingly, he didn't seem to mind.I was dying because Lanie was just happily playing on a blanket and no one could hold and contain Asher!

Asher is cutting all four of his canines at the same time so he has been super delightful. It's not terrible, it's just not that great. Asher was walking by and Michael said "Asher!" as he was walking by and Asher just growled and kept walking. Fortunately when Michael put his arms out and called him over he came over but growling? Ha!  He makes me laugh. We have also gotten to the point where he will flip his lid if you offer him a drink but he can't hold the cup (or, you know... the Capri Sun that he will squish and squirt all over everywhere). Flip out as in yell and walk away throwing stuff. Yay!

Duncan and Dylan had school on two days of last week as part of her ESY program and they loved it. In fact, she was so worn out on the first day that when we came home she slept for four hours straight! Her teachers said she grew five inches and I am sure they are also enjoying her long reach and ability to create quite a mess by pulling everything off shelves and tables. They will have two more days in a couple of weeks and then off for a couple of weeks until school starts again (though I am not sure when that is... end of August maybe?) Ian just wanders around the house going "where bruddah?" when he is gone.

Watching Ian with Dylan is adorable. Like ridiculous. He always brushes her hair back from her face (or attempts to) and pats her. He LOVES his Dylan. "Diddie toot" or "Diddy pitty" frequently come out of his mouth. He also has figured out if he puts his hand flat on her and wiggles it it tickles her and she will laugh so when I am doing her stuff and she is laying down he will come over and tickle or pat her. He is very nurturing. I think Duncan loves her too, he asks about her and likes to keep tabs on her, but it's a little different because she is always kind of there. Duncan even said he was going to marry her the other day, he also says he will marry me, we will work on that later. Dylan might need her brothers to take care of her someday so it warms my heart to see this!

My old man had a birthday! To celebrate we had him grill for us! Yay!

Asa got a helmet, and like, it's like, one of the cutest things I have ever seen. Matt even put ears on him just for fun. Clearly he has no idea what the excitement is about.

Aunt Ami at FYOF - All my pictures of Asher look like he is trying to devise a way to escape. This one included.

And that's why we penned him up!

This one wasn't too bad (it's the phone...) but it didn't last long. A for effort.

I got one of those value packs in the mail and Duncan wanted at it. He had lots of fun cutting out all the "tickets!" He is concentrating! (Oye at the hair, he just got a hair cut and once again looks like someone loves him.)

Jelly Stone!

We took a family trip to Yellowstone and phew! Vacations are hard work! lots and lots of preparation and STUFF! Lots of stuff. I was in a cabin with Jill and her kids and Michael, Megan and Owen. After our last cabin experience, we bannished Dylan and Matthew to their own little two person cabin. That was better accommodations than last time when they were in the car all night right?

It actually ended up with Ian in with Matthew because the first night he pitched a fit when it was time to go in the pack and play... Yet, in bed, Matthew said it was time to go to bed and Ian just rolled over and snuggled in to sleep.

The cabins were adorable and so clean and nice. They even had towels and little soaps. It was definitely somewhere we would potentially stay again for a Yellowstone trip! Kristen and Gary were next door and LouAnn, Melissa, Eden and Suzie were across the street. So close! LouAnn's cabin had a fire pit (not all of them did) so the boys were set and entertained. Not to mention that straight behind Kristen's cabin was a huge play ground for all the kids!

Duncan was in with me and Asher went to bed in the pack and play even though I pulled him in bed with me at the start of day light. Having spend several nights with Duncan I have decided that all four years olds have RLS, restless leg syndrome. There is nothing like sharing a bed with a four year old. I finally had to say, "STOP MOVING". Maybe a few times, and after he really did, he fell right asleep. I could always tell rght when he went to sleep!

Going in to the park there is a traffic jam, every day. Conveniently it is where a bunch of Buffalo tend to hang out. I said "drive people, sheesh! You act like you have never seen a buffalo before!" After about 10 minutes I said to Matthew, "I guess maybe they haven't seen a buffalo before have they?" and he told me he was just going to let that comment slide. I guess when you see buffalo all the time, seeing them isn't that big of a deal? Have I been spoiled?

There was a huge mess coming in another day and I looked to see what the fuss was, it was two moose. Really? Moose? Causing a traffic jam bad enough for the ranger to come manage traffic? Have you not seen a moose either people?

I am not all blasé about the animals, we did come up on two black bears right by the side of the road one day. The rangers were it to keep things moving since the bears were RIGHT there and there wasn't a pull over location. This Is the first time we saw black bears there. When we went on the motorcycle ride to Yellowstone we saw a brown one pretty far away. Alas, the boys couldn't see them because they were close enough in the drop off on the side of the road they couldn't see. I told Duncan I would show him a
picture. Not that he cares that much about animals, but I will still show him a picture.

We also saw a few elk (not worth a traffic jam) and the herd of antelope (or are those elk too?) that hang out in Mammoth, a coyote staring down a hole, and lot and lots (and LOTS) of mosquitos.

Duncan got a few bites on his noggin, always the forehead with my kids! The morning after his bug bite was bad on his forehead he woke up and couldn't open his eye. He said "mom, my eye keeps sticking like this." and points to his closed eye. I told him I would take a picture of it and show him what it looked like and I did, mainly because I wanted a picture, but you know... And he said "my eye looks pretty funny." which doesn't read as adorable as it sounded. I send him in to Michael and Megan's room and told him to tell them it was time to ring the bell. He was dubbed "Quasimodo" the rest of the day.

It didn't seem to bother him that he couldn't see out of the one eye. He told Jill "I can see you if I do this, or this" holding his eye open with one finger. Sweet boy. How nutty would it drive you to have to only see out of one eye?? What a good sport.

The next day it was a puffy other eye! But it wasn't completely closed so that's good. Poor kid.

We told Duncan one day we wanted to find a place where he could get out and run and he said "uhm, maybe not run, my legs are heavy" this is most likely because of the Benadryl that we gave him for his bug bites. It knocked him out. Over and over. Heavy legs, yes exactly, we all know how that feels.

On Thursday the big boys went on a float down the river and LouAnn, Elijah, Dylan, Asher and I went to see the bears and wolves at the rescue. We got very close up to the bears, it was really neat. They only have a couple of bears out for a limited times throughout the day, not sure why, but it makes for a fun experience watching them run, play and explore the area like they hadn't seen it in a while! Very different from a zoo where they just sleep in the same spot when it's hot outside.

During one of the rides my very mechanically inclined boy asked, out of nowhere "Dad? ... Are there gears in my head?" This is a perfectly logical question to a four year old who understands that gears make things work!
The drive home was long, long long, we drove back through Jackson and didn't get on the road until later than people expected (we didn't know the plan, and why wake sleeping kids?). We didn't get home until after 11:30 and the kids were running around the house like mad. It was crazy! They were happy to be home!

Somehow we seemed to change our kids in for other ones while there because we had kids that got up at 6 and 6:30 and now we have ones that get up at 8:30 and 9! Who are these kids?? Best kids ever! Let's see how long this lasts!

I have a few pictures of these two each pointing different directions as to where to look for the camera. This is them agreeing to disagree I guess!

Looks like he is posing doesn't it? He is really in motion though! Kid doesn't stop! There were several potguts, chip munks and other creatures hanging out at this picnic site. At one point a chipmunk even crawled across the toe of my shoe!

Asher clearly thinks Owen and his glasses stealing is hilarious. Owen is enjoying the audience too! 

Drool and all, cute picture of cousin Eden!

I wanted to get a picture of my little Quasi!

So he started making faces! 

It was unexpected and pretty darn cute!

If we can't put baby in the corner... can we put him in the trunk?

Happily passing time, NOT in the car!

Dylie and a cool pot. Obviously she is enjoying the scenery. I think on this day she slept all day, in and out of the car a few times! I also have a picture of her taking in Old Faithful in the same way.

At Yellowstone Falls. See, she didn't sleep the WHOLE time. Just almost...

Quasi getting some snuggles from Uncle Gary by the Falls. Looks fake doesn't it?

Asher, Grandma and a gyser.

This cute little gal was at the grizzly and wolf rescue at West Yellowstone. She was just sitting there, like this, for a long time. She would look around though and she stared us down a bit. LouAnn remarked that she didn't look very majestic just sitting there like that. That's when we read her sign. She has neurological damage from a fall or from poisening, so we decided she was our Dylie bald eagle and she was as regal as Dylan is!

It's always a good day

When I can use my "Better full than empty, that's what I always say!" line! Oh wait... that's every time I leave the house (no joke). It's my standard response to "Boy, looks like you have your hands full!"

Friday we went to the little tiny splash pad by my house again and it was WINDY. Like, really windy, but it was hot too so it wasn't so bad for a little half hour or so. Dylan did remarkably well in the sun and wind. She was very awake and happy in the stroller playing, blowing zerbits on the stroller tray and watching. WOW. I mean WOW too, because my girl hates the sun and the wind. This give me hope for more summer activities. If it were a little less windy I would have even taken her for a little walk - Buckled Asher in with some treats since he is now moble and thinks he need to walk all over (usually not the water...).

We weren't done with the fun so we came home and got out the little plastic pool (this time I had my camera) and Asher tried it out but didn't last very long and I got him taken care of while the big boys continued. Until Ian decided to dump dirt in the pool. Wahoo. Well, it was time for lunch anyway I suppose!

We got the play set all put up and it's AMAZING. To think all of it came in five small (very deceiving) boxes! In response to Duncan's question about how much he loves Michael, Michael responded "Do you know how much I love you? Five boxes of wood and a Saturday!" All day, and it got to 100 degrees. Papa, Uncle Michael and dad were showing the love for the kids, that's for sure!

Ian has become a sort of parlor trick in the last week or two. Matthew took him to get ice one morning and he looked at the cooler and went "E C I" with the letters. The boy loves his letters, we knew this, and we knew he was getting good, but he is AMAZING. I was wearing sweats and he said NYC. It's really funny, and super cute with his little speech. I wanted to get it on video so I pulled out some flash cards and he only got confused on three letters, Z which he thinks is S, T which he gets mixed up with I, and K which he thinks is X.  Oh, and the number three is often an E.

My baby fell asleep like this one night... He was really stuck too! Maybe he should have let us know?

Pool shot!

Three boys

And while Ian was having fun swimming of course my little mechanical boy was off trying to figure out how to raise the umbrella!

Before

During (Duncan got to go out a little but he is inquisitive and there are small parts. I am not sure Foreman Michael would have let him live if he were out the whole time...)

This is not excitment

An accident waiting to happen. Though I have said it will be more of a controlled fall since it is on a little bit of an angle.

Cute

Five little boxes

My little boy had an Oreo knock off! I think it would have been worse if it were an Oreo since they seem to be a bit more water soluble!

What I say to new special needs moms

Recently I got an email from someone I had reached out to when her son was born with a rare 7q deletion like Dylan. I hadn't traded emails with her in a long time and I noticed, attached to the new email, was a trail of old emails that we had sent eachother.

Normally, when I reach out to a new mom I just tell them what I am inpired to tell them. It's certainly no form letter and who knows what I have said and shared along the way. I tend to run on and on, which I really had in this instance too, but reading over what I had written to this woman origionally I felt like it also needed to be shared on the blog. Preserved for those who randomly find my blog but that I don't have the pleasure of trading emails with or reaching out to.

What I tell new moms:

I just wanted to tell you a little bit about my daughter Dylan and invite you to visit my blog www.cutelittlemonkeys.blogspot.com. Dylan had no prenatal diagnosis but she was IUGR so we knew something was going on, turns out a LOT. She was born at almost 31 weeks and her birth set our family into a bit of a tail spin.

Information after information we found out Dylan has a mega deletion of chromosome 7q and as a result she has spine issues and her brain is malformed. Her prognosis was quite bleak. You know, those doctor only tell you what's in their text books, which often works to the families detriment! We were told that she would probably never move or respond or interact with us. Well, she's done nothing but prove doctors wrong from day one.

She was transferred to PCMC when she was a a month and half old to have surgery. She was in the NICU 89 days. Since that first surgery she's had a few more but nothing she can't handle. These babies are so tough! So so much tougher than their parents!

In June of 2008 we got a Mic-key button (g-tube) after toughing it out with an OG tube for far too long (though, I will tell you, it didn't seem like too long until after we got her button). It's another sugery, but it really has been great for her.

Today Dylan is a happy, almost three year old. She's one of the very few with her diagnosis who will walk (oh yes... she will...) and she is adored by everyone who meets her. And those doctors thought they knew it all...

I know it's tough right now as you are learning how you and our family will cope with your son and the future. But you can do it. I know the grief that you feel. I think about how I felt when I first learned about Dylan and I am flooded with emotion. Right now your job is to fall in love with that baby and not worry about the future, if you do that your family will be blessed with the strength and knowledge to carry on and he will thrive! I can't wait to keep reading about him and how he will also prove the doctors wrong.
Please feel free to contact me if you would like to talk. I have been there, we are still there!
Hang in there mama!

This mother responded and (kindly) allowed me another chance to ramble on...

Hmmm, have I always been this way? I would like to think for the most part I have. When we first heard the word, the dreaded 'word' for what she might have we went to the Internet and my husband and I had a breakdown. We thought it was the end of the world. There is some truth to that you go through the stages of grief when you find out your child is special needs. You grieve, you mourn the 'normal' child that you were dreaming of, that you were supposed to have. I reached acceptance very quickly, the 'we can totally do this!', quicker than my husband (though I do believe he bonded with her and 'fell in love' more quickly than I did).

Once you get to that point, the world is your oyster, nothing isn't possible. And the impossible doesn't matter any more.

I know parents who, after a year, haven't yet reached the acceptance point. I know mom's who constantly are pre-occupied with how much time they will have with their child, and how their child isn't measuring up. I don't know what's normal, it probably all is!

I love that you are starting to realize what you're calling your 'new normal' is, that's a great way to look at it. Dylan's Pediatrician asked us early on if we have given up and thrown up our hands and I promptly said "Yes!" He then told me that the parents who realize that they are not the ones in control are the most well adjusted and happiest parents. Once you realize that this is the way things will be and you should make the best of it you really can take anything thrown at you!

I promise you can do this, you can... you will amaze everyone. People will ask you how you do it, how you made it through the NICU. I won't tell them that you and I know we are just normal parents doing what has to be done because we fell in love.

You will also meet the most AMAZING parents of kids with special needs, it's a wonderful 'family', very inspiring.