Stuff just falls out...

Last Friday Matthew took Dylan to the SB Clinic as a follow up. I wasn't able to go because our normal sitter for the boys was preoccupied... I mean really? So it's early day... And you have six kids... But still? Wink wink. It was okay though, really we both don't need to go and to her credit, Eden offered to watch them even though it was going to be most of the day. Ultimately we decided to divide and concur and it was fine.

Matthew said her PT was showing her off even though she wasn't very cooperative. No big news from the other departments, nutrition said we were doing great and that we didn't need a multi-vitamin but Neuro said the anti-seizure med she is on can deplete some vitamins and to add one. I think we will go with Dr. Neuro on this one and add a vitamin back in. bummer though because vitamins are yucky.

After clinic she had a renal ultrasound to check out her bladder and kidneys and everything looked good there but we can review with Dr. Water Works next month when she has her VCMG bladder study. The cathing has been going great and no infections (knock on wood) so hopefully everything will stay the same.

A few weeks ago I noticed blood and ooze on the gauze pad around Dylan's button and took it off to see about a pea sized bubble of... I don't know, tissue? It was gross. So I took some lube and a q-tip and rolled it right on back in. I asked on a forum for Tubies and someone suggested granulation tissue built up inside, could this be our first experience with granulation tissue? Either way, everyone there said to call a doctor! I didn't get right on that. It stayed tucked in for a couple of weeks but then there it was again, it became more persistent at popping out (nast) so I called. The nurse also suspected granulation tissue, something that nurses can burn off in office, but because it seemed to be coming out of the stoma, she wanted the doctor to check it out.

So after Dylan's appointments Matthew ran her in to the surgeon. He told him it could be granulation tissue or it could be stomach lining. Uhm... Yuck? Either way he said it wasn't a problem and they can just burn it off with silver nitrate there in the office. So he tried (but it wasn't sticking out as much) and then scheduled a follow up appointment in a month so they can check it out again and hopefully it will be gone. It was gross again for a day (but it had been burned right?) but then it's looked really good for a couple of days so we shall see.

Doctor said "Basically, you have a hole in your body, stuff falls out." and shrugged. Nice!

FYI, this burning of tissue doesn't hurt her. We have had nurses do it a little, but there wasn't this much tissue. Matthew said she didn't even notice. (Dr. Ped even used it to cauterize Asher's umbilical stump, again, gross!)

We actually had PT at the bounce house again last week and it was crowded and hot! Definitely a different experience than last time. Not nearly as successful and as such, no good pics. MIke did comment on how Dylan steps up to standing, you know most toddlers bend at the waist, bend their knees and then straighten their body to stand, using their hands to push up from the floor. He suspects that she can't do this because of the braces and them not allowing movement at the ankle. He said, "I know you said she does this, and I have seen her, but that is so beyond her capability it just amazes me!" Now really, go on your knees, put one foot out and try to stand. Hard no?

Tuesday night we went to the D's preschool orientation where we just dropped off paperwork. For Dylan they had to make copies of some very important ones to make sure the state pays for her education. Really, the kids have a chance to meet their teachers and see their class room but it's a repeat of last year so nothing new there. But, little miss show off was all over the place! Walking like crazy! Maybe because she was kind of familiar with her surroundings? But it was pretty neat. She almost walked right out of the class room door. So funny. I had to sit down and complete a form I somehow misplaced and it's not like I can just set her down and expect her to stay, she went walking off and then she heard Matthew and Duncan coming out of the rest room and she set off to go find her daddy! What the...?

There's a little girl with HPE that walks but I see pictures of her family taking her places in a wheelchair and occasionally letting her out to walk. Naively I was thinking 'If she walks, why the wheel chair?' Oh I get it! I am eating my words. she can walk, but only to where SHE wants to go, not where she should go, or where we want her to! Fine as long as she fits in the stroller...

We will also have to do her IEP early October. Meh.

Ian has taken to knocking on any door he would like to have open. This is his bedroom door after naps, the pantry door... And yes, even the refrigerator door. He used to hit the fridge or the pantry for food or drink, but now I see a little fat fist form and he knocks softly.

And I leave you with a conversation between Duncan and I

"Hop out of the tub, I have a rice crispy treat with your name on it!"
"It has my name on it?"
"Welll... No, I just have one for you"
"Oh, well, you better put my name on it!"

10 minutes later
"You ready to get out?"
"You have a crispy treat with my name on it?"
"uhhh, no"
"Oh, you better put my name on it."
"How will I do that?"
"It will be easy mom, just take the thing and go like that and put my name on it."

(Me racking my brain trying to figure out what I can get away with here... I settle for making a "D" template and using green sugar sprinkles.)

"You got my name on it?" (Insert beaming smile here...)
"Not your name, but a D for Duncan!"
" A D for Duncan? Yay!"

Phew! My little sassy pants!






Duncan in time out. Whenever I send him Ian marches right over and sits right next to him. Me thinks he won't always feel that way about time outs!

Off the grid

We were very brave last weekend and we went... Camping! Well, kind of. Luxury camping where you have a soft bed to sleep in, a (Luke warm) shower and someone else cooking for you over the campfire! It was no hotel, I don't think the floors have ever been mopped, washed or wiped, as Dylan's hands, face and knees can attest) but it was certainly better than a tent that's for sure!

We were so excited to be able to bring (drag?) along Shannon, Tracy and Charlotte. We really couldn't have done it without them since Duncan and Charlotte were nearly inseparable the whole time and we could count on them being watched. We are also very fortunate to have other friends that loaned us their four wheelers, yes, loan. Crazy right?

I knew going into this that we would not be able to do traditional camping things. You know, sitting around the camp fire, letting your kids run around and eat dirt, play in streams, and create havoc all day. Dylan's our wild card, she doesn't walk and I wasn't about the have her crawling around in the dirt (she's far too oral!). From the get go, I knew a lot of time would be spent in the cabin, between her and napping babies I expected to be able to hole up and chill... For a recluse like me, that doesn't sound so bad! But instead we went on a couple of day trips which were pretty fun but it did take us away from the camp.

The first day we went into town to try and remedy Dylan's bowel situation. We missed a dose of Senna and as soon as she lost her lunch at the cabin, I knew she was stopped up. So In town we got ahold of Dr. Ped who said to use Miralax, lots and lots of it.... Until the problem was solved. We started up there camping and continued at home and yep, that was the problem. But she's much better now. Ongoing I think we will do a good solid heavy dose of Miralax about every 2-3 weeks because even when we get her meds right she gets stopped up occasionally. Anyway, because of this she was on a drip most of the time... Another kink in the plan!

After the town and lunch at an adorable little park we went to see The Sinks, which is a place where water rushes into a rock and then goes into a bunch of limestone tunnels, so many tunnels that it takes the water 2 hours to travel a half mile, a distance that should only take 5 minutes. Pretty cool eh? It all comes trickling back out at The Rise, just down the road where trout pool and you can feed them from a deck pretty high up over the river. Totally worth seeing.

The next day we went to a ghost town, an old gold mining town that was abandoned but it's now been done all up for visitors. It was pretty neat but I think we would have all preferred walking amongst old old buildings that haven't been repainted and fixed up... But it was interesting all the same and there were info placards all around the town which provided some great facts. Not enough for me, since I am a junkie... I will have to read more online. They had a ton of little movies and things but really, what four and three year old (not to mention a one and none year old) wants to sit and watch? I figured it wasn't anything we couldn't read later.

Back at camp everyone but Dylan, Ian, Asher and I went for a ride and I got all the kids to sleep, Dylan was propped up on the couch like she was sitting up all cute so I ran to the car to get the camera and I hear a 'shhhhhhhhhh', I look down and there's a screw in our tire. Get out! We are 15 miles in on a dirt road! I wasn't sure what to do so I go walking out to the other cabins and I see Shane and my cousin Randy and I told them. They came walking over to take a peek and told me to pull it to flatter ground. Then, Randy said the magic words. "I tell you what? Why don't you go park this down by your Uncle Dee?" Ha! So I did. those men had the car parked in the shade and that tire off in no time. Then Randy and Shane ran it into the nearest town to get repaired! (Which wasn't a walk in the park, they apparently went door to door in this tiny town to find someone to help!) After a few hours they were back, and it was on, good as new. Awesome. I felt very taken care of!

The last night Matthew and Tracy played a game kind of like horseshoes with Bob and my Uncle Dee and they got schooled... Twice. At one point my Uncle Dee was so confident he started stacking his beers on the blocks that Tracy and Matthew were supposed to be knocking over. Matthew said next time, mandatory coffee drinking to sober them up a little because they were too good while they were drinking!

Sleeping there was pretty crazy! Tracy has a CPAP but he didn't want the generator to keep the camp up all night (even though, I would have loved the steady white noise!) so we made him a bed in the van. It was awesome... The seats folded flat down and we carried the futon mattress out and covered it with blankets and sleeping bags. Well, as a result no one slept! He didn't sleep without his CPAP and Dylan kept everyone but Duncan awake in the cabin! She was having a terrible time breathing. So the next night it was generator time! Matthew and Dylan got the boot to the the van and as a result we all slept a TON better! Phew! Even Dylan did great the other two nights!

Duncan did fall off the bed once. This was the last night, the other two nights I tucked the sheets in tight around him but this last night he didn't go to bed until after everyone else did because he had a nap. Boy did it scare the crap out of us! It was an enormous BANG! And he started yelling at the top of his lungs but back in bed he went and he went right back to sleep. He doesn't even remember it.

We made great time on the five and a half hour drive home, while driving up was a fun adventure driving home was all business! Everyone slept like rocks and it didn't take but a single day to catch up the laundry. (All day, but one day all the same!)

I took a few pictures but Tracy took some great ones so I am hoping to have more pictures within the next couple of weeks!

Child labor!

Last week our family took delivery of an AWESOME Lego table built by Uncle Greg himself. It's a big table with raised edges to prevent mass Lego chaos. it is super cool and measures just right for this Lego plates to line up along the bottom so it will have a Lego surface to built upon. I have been shopping on eBay for cool raised plates and anxiously watching the red auction countdown. So much so, well... I had some restless sleep last night because I was dreaming about... You guessed it, LEGOs! Lame! Guess that's what two days strait of eBay browsing will get you!

Since we are only 25% as far as non-Lego eaters go, it may be a while before it makes itself a focal point in the house, but we are on our way.

Matthew has to decide what to paint it and he was outside with the boys working in the garage when he got a brilliant idea to let them paint too! We stripped them down and off they went. It didn't take Ian long to brush his foam brush up in his hair... He was having a great time. Then Charlotte showed up (with her parents) and she was wearing a cute fluffy yellow lacey number. Off it came and she joined the party!

We got some great pictures of the three of them but I will leave out Lottie's for the sake of modesty!

Off to the tub and then around the block for a non-mother approved motor-cycle ride! Who is in charge here!?

My little fatty fatcakes Dylan has gained weight! I was just thinking that she looks so good, not like a starving little person but just a regular old thin one. Which is good, you could see her shoulder blades a few months ago and we were a little concerned.

She is up to 11.6 kg which is 25 lbs 9 ounces. I think the last time we went in to Dr GI she was at 22. That's great gain over a few months! Over all she is in the 3rd percentile but her weight to height is 50% which is PERFECT. Yay!

I credit the pump! Having the pump allows us to slow her regular feeds enough to where, if we wanted to, we can feed her when she is sleeping. In the past she would wake if we tried to sneak food in because neither of us were willing to sit there for an hour to drip it on in!

We have also been setting her up on 20-30 CCs an hour at night, about an hour after her last feed, until about 2 or 3 in the morning. If we are awake awake we will give her a few ounces over 15 minutes to top her off. So, she is getting a little more food and definitely not missing any feedings. She is also waking up happy most mornings!

We got this growth information at her Dr. Endo appointment, I sent her with her dad and stayed home with the boys. Not sure what all went on, since dad's not like me and he doesn't take sufficient enough notes (for me) but I guess it went well. We officially decided we wanted to keep her small and since we actually have control over this stuff (we give her meds to make her grow) we can do what we want here. Dr. Endo decided we will use 3% as her goal then and work to keeping her right around there for now. 3rd percent as an adult female is 60 inches though, and that's just shy of my height so I hope at some point it will be okay to slow her even further. Course, I wasn't there to ask these questions, but you know... We have time.

Speaking of little miss, she is all over walking. She even stands in the middle of the room by putting one knee up and stepping right on up. Just a couple of days ago she would fall nearly all of the time, failing to gain her balance when she stepped up, but now she just steps up and goes. And most of the time she can even walk over to a toy, lean down and pick it up! Amazing!

So she teeters around, but very much dislikes to be lead by hand. In fact, if you try she will pull her hand away so hard it will knock her right off balance. We are still trying it though, hopefully she will get used to it and be okay with it. Would be nice to lead her on little walks. (very little... Like across the driveway) and I am sure we will get there soon.

The other night she had her braces off because I thought she was going to go to sleep and she didn't. She tries so hard to walk without her braces and doesn't really do very well... Well, I suppose she does pretty good for someone with no calf muscles, legs that don't straighten all the way and ankles that roll in! Hurts me to watch her but when I told her not to, Jessica snapped at me and told me not to dare tell her that she can't do something. She said if it hurt her she wouldn't be doing it! Yup, she's got me there. So yea... Whatever. I am sure she still likes walking better with her braces on, she can go much further! But I will try to stop cringing when they are off!

Awesome


It was hot! Note the red faces and ears!


Charlotte in her yellow lacey number. I think she looks like a super model in this picture with her hair gently swept over her eye.



Aunt Jill brought over Thomas Duplos and these things are AWESOME. We added the Duplos that Duncan got from Jessica and Steve and we are able to make some really fun creations! They are perfect for him, he is the perfect age so major props to Aunt Jill (and Roman and Noah's sacrifice.)

Seriously?

Could this kid look any more like his daddy? I mean... Ridiculous!


I guess maybe if he had more hair...

PT at a Bounce House! FUN!

Mike talked me into packing up the kids and taking everyone to a bouncy house place for therapy today... He knew he had work to do because let me tell you, germs freak me right on out! But he knew the whole family would have fun and he said it was very therapy friendly so we went for it, But not before I recruited Eden's help!

Dylan did great and she loved all the bouncing! I must say, I was a little surprised. A lot of time was spent on the big bouncy mat in the middle of the room but she even liked it in the bouncy houses!

Ian was funny in the houses, he just kept throwing himself down on his back and looking up. Standing, falling, smiling, standing, falling, smiling. He's never been anywhere like it!

And Duncan was all over, it was like a big free for all.

The owner was there and he said that we could come back any time, Dylan was on the house. They even let her wear her shoes, he just washed them clean with a clorox wipe (see, he tries to keep things clean!) Yay for letting her be an exception to the rule!

On the way home we stopped for Blizzard at DQ. Today DQ will give a dollar for each blizzard sold to your local Children's Miracle Network hospital. Just tying to do our part, we got three. Duncan was asleep in the car, at 12:30! Imagine it has something to do with him getting up at 6:15 this morning. (Ouch!)

Off to Aunt Ami's where we invaded... It's always good to go there because of all the helpful hands. It's almost a break for me!

Trucking up the big bubble thing in the middle of the room.


I don't know WHAT we would have done without Eden's help! gotten no pictures that's what. thank goodness she was there chasing boys so I could appreciate my little girl's progress!




Giggling, she was really loving it.


A little pep talk before she climbed up these things. Slightly easier than stairs... She did so well!




Most of my pics were blurry, you know... Because we were all bouncing and all.


Post Therapy snuggle... he said her legs were jello at the end!


This was Mike trying to get her to put her hands down to protect herself from doing a face plant. She actually did quite well. You can see there's a real potential to flip head over heels (which I almost did a coupe of times).


Here she is climbing up! (I am sure it was the pep talk!)


Doesn't she look like she's having a great time?


This was the funniest thing ever. duncan was being obnoxious and pushing on Mike from inside the bouncy house. So mike would just reach in and flip him right on over. He probably did it 7 or 8 times and each time was as funny as the last.

The big boys went to Powell

My big boys (that would be Matt and Duncan) went to Lake Powell last week with all of Matthew's family! Duncan was very very excited to go in "daddy's boat" which isn't our boat. I suppose technically it's Matthew's mom's boat... But not to Duncan. If daddy drives it it belongs to daddy. He has even tried to tell me I was in daddy's seat when I was driving MY van. Whatever.

It seems like he had a great time. Matthew interviewed him to try and tell me what they did... He was only kind of cooperating. It was adorable but I am afraid it won't translate to type very well. When I asked who was there he said "Uncle Greg!" Considering there were several dozen cousins, aunt and uncles there... Greg must hold a pretty high ranking!

According to him all he ate was gummy fish. I think that was pretty much his most favorite part which mean Aunt Ami gets all the special bonus points since she was the one that brought them.

He also went down the slide "five" times, which, from what I understand was more like five-hundred.

Hopefully someone who went has some pictures of the happy trip, otherwise it may go undocumented, in photos anyway!

The rest of the littles and I hung out for a nice relaxing week.

On Sunday we ran up to the cabin for dinner. It's amazing up there right now so I am glad we got the opportunity to do that this week for sure!

And some funny notes...

After going potty I said to Duncan "Wow! You had to go really bad!" and he responded with "No, I had to go very nice!"

He has also taken to calling moles 'nipples' and considering both me and his father are rather moley, we have "lots and lot of nipples!" Then, looking in the mirror he said "I want to see my nipple..." Huh? Oh, yea... "mole" and here it is under your chin. So, if he walks up to you and asks to see your nipples... Please correct him for me, and then show him a mole mkay?

Duncan has a train watch that my mom gave him a long time ago... He doesn't really like to wear it, but Dylan likes to eat it, so it's always around. Occasionally he will want to put it on and he did this the other morning. Then he shows it to me and tells me it's 37. Oh yea? Really? But a few minutes later it was "58" and what does this mean? Why, time for making bacon! Yep! "It's 58 and time for making bacon!"

Poo is our nemesis.

You know how I mentioned that the pickle seemed to have a stomach bug? Yea she was stopped up. Just full to the brim I suppose.

We have really been carefully working around her feedings, having her on a slow drip, really slow, like 20 CCs an hour, that's like nothing! I had her on higher, like 30-40 and she would be okay for a few hours and then blah. Meanwhile she didn't seem fevered though she wasn't walking around nearly as much but I didn't know if that was because of the pesky tube...

I didn't know this was the problem until Tuesday when she got unstopped. There are signs to watch for and she seemed to have the 'rhea with it so I just wasn't getting the normal signs that would indicate that was the problem. Then Tuesday she started, I helped, she finished and she was in so much pain she threw up. Heart breaking. So there we were covered in pretty much anything you could be covered in and she passed out (which is how she has dealt with pain, always). So I tackle things, a little at a time, go to move her to her bed and she wakes up, just as happy and smiley as ever. Such a trooper!

And you should probably know that these things, situations, are much different when they involved a special needs kid. At least mroe acceptabel for me anyway. Just the other night Ian was phlegmy and coughed and lost it in the tub and my wonderful awesome, amazing, adorable husband really took one for the team and cleaned everything all up. Maybe it was foresight for what was shortly to come? We make such a good team. My outlook on these types of things is so different than I ever thought it would be! But I prefer Dylan's messes over anyone else's!

I think next time she is upset to her stomach for a day or two in a row I might just hit her with a laxative just in case. Taking everything into consideration, it could have been really dangerous for her to be that stopped up.

The bright lining, no seizures while she was that sick. That is GOOD.

Ian has been saying much more around here than he used to say but he is far from fluent, he doesn't need to be! If I go grab him a snack he runs over to the TV table, or climbs up to the table and pats it. Like "put it here". He does it in high chair too, clear a spot and then pats it all excited. Good on the non-verbal, as far as the verbal goes, he says "I don't know" which is just about the cutesy thing EVER. Also dad, roooooaaar (as in 'what does a lion say?"), Wow Wow Wubzy (brilliant), yes and he says no very well. He does not perform on command though, I cannot get him to say 'I don't know' for anyone and was lucky to catch it on video!

I fed Asher solids for the first time, (tear, I hate milestones for anyone but Dylan!) and he likes him some applesauce. He did really well and was quite happy about it. Then Jess brught me some evil brownie with ice cream, chocolate and peanut butter which Asher seemed to really enjoy as well. Looks like we don't have peanut allergies! I mentioned this and Jessica told me that she took a jar of peanut butter to Matilda's one year check up... Yes to feed it to her in the office. She said at least she knew she would be taken care of if something happened there! That's good stuff! Love that Jessica, she is good people.

Cute boy


I so wish this wasn't blurry! This kid has a super cute smile.


Handsome big baby saying "I dunno!"