From bummer to just plain BAD

Dylan appears to be having Infantile Spasms again.

Wednesday night I noticed Dylan was acting very odd as I was feeding her and getting her ready for bed. So odd I was worried, really worried. I picked her up and she was hanging on me, holding on so tight. Then she fell asleep, right in my arms. She NEVER falls asleep in my arms, ever. I hesitated to admit, but thought she might be having spasms again... I mentioned it to Matthew who said that it was probably not them (denial?), and also that he wasn't sure if he could do another round of seizures (sadness...), and tried to reassure me and tell me not to be concerned.

Thursday morning as I was dropping her off at school, there they were... again. She was having them. Faint, like when they 'burned out', but they were definitely there. My heart sunk. Here we go again. We always knew they could come back, or turn into different kinds of seizures, but one can hope. I was broken. It takes quite a bit to break me, but I was most definitely broken.

I called Paula as soon as I got home. She's wonderful, of course, and she told me to come to Spina Bifida Clinic the next day (Friday) to see Dr. Neuro and to schedule an EEG as soon as possible, hopefully before clinic. When I called for the EEG they only had afternoon appointments but upon checking with Paula that was okay, we would just see the Neuro first and then do the EEG.

I was honestly a mess - I put foundation make-up on for probably the first time since my wedding (I kid! Kinda...), that stuff actually works quite well. I put on a happy face and ran in to Dylan's school to teach Ms. Shelly how to feed Dylan. I also talked to the Manager at the school about the kids and the bus... more on that later. I didn't want to talk to anyone about it, no one... I had to come to grips with it myself before I did anything like that! So I told Matthew, but that was it. He was fine - that's the good thing about us, we never "break" at the same time, so we balance out well when the other one needs, more than anything else, someone to be strong.

For the EEG we were instructed to keep Dylan up 2 hours later than usual and wake her 2hours earlier. Pretty hard with that little gal since her sleep schedule is absolutely insane. We never know what times she's going to sleep but her dad kept her up until 2 (with one teeny nap at about midnight when he wasn't looking) and I got up with her at 7. On the way to drop the boys off at Ami's I had to do a mad dash to the back seat when we saw her closing her eyes. Which she thought was pretty funny actually. I was tickling her hips and she was smiling with her eyes closed.

Dr. Neuro talked to us about the spasms. Normal IS shows up around 6 months, not 2 years... and rarely have they seen them come back after three! (Rarely, not never...) But he did say that we keep in mind that her nervous system is at about 9 months and that probably plays a factor in it. We talked about medication, we talked about the plan, we talked about everything. Will they get worse? Maybe...

The first EEG she had when they started in July 09 was somewhat inconclusive. She maybe had hypsarrythmia (the cause of IS), she maybe didn't... it wasn't normal, but was it IS? The steroid medicine only works on IS and a couple other types of Epilepsy, so if it wasn't, and we started the aggressive steroid treatment we might be barking up the wrong tree. The EEG she had mid-treatment showed more hypsarrhythmia and made them more confident of the decision they had made to start ACTH. The ACTH worked, the seizures stopped, that time... and usually if the IS was to start again, it would have started before a year down the line, but we are all about keeping people on their toes around here aren't we?

If this EEG comes back inconclusive we make another educated guess. We might wait and watch, we might be aggressive. It's not going to be fun though... ACTH times weren't good times here. While Dylan (thankfully) wasn't affected like some other kids with the bloating, high blood pressure and lack of sleep she was just generally miserable and inconsolable the entire time. She was a whole new kid when she was weaned off it. One of my good friends who's amazing little person had IS actually has some ACTH on hand if we need to get the ball rolling before insurance agrees (the cost is another factor, as each vile of the medicine costs upwards of $30k).

Dr. Neuro asked about her milestones, we she going backwards? Part of the reason IS is such a scary type of seizure is that the seizures are damaging to the brain and the children can regress... rapidly. Often before you can get in to see the doctor and start treatment. Imagine having a little Ian - starting to walk - and then a week later having that child be a 2 month old again. Dylan didn't seem to regress last time, making it an atypical type of IS, and we are crossing our fingers for this time but it's only been a few days.

The EEG went quite well actually. She was so AMAZING while they put the 28 little electrodes in her hair, roughing her up, pulling her hair and sticking cold globs of glue on her. I was holding her head and she barely even complained. Just the holding would normally tick her off and combined with the annoying things and the lack of sleep? Yea... she's pretty incredible. Then came the turban, a wrapping around her chin and under neck to keep everything in place.

Her dad curled up on the bed with her, they turned the heat down to probably 75 degrees (it was at 80!) and turned the lights off. We were hoping for sleep. The most common times for seizures are in the first and last 15-20 minutes of sleeping so the goal would be for the appointment to be kept in this type of sleep.

I think daddy passed out first but Dylan followed shortly after. Success!

I have never seen a normal EEG, but hypsarrytimia basically means that the parts of the brain (represented on the screen by lines) don't work together, they kind of do their own thing. This was happening... but what do I know? She also had a few "XL Abnormal Spikes" which a quick Internet search can tell you show up in abnormal EEGs, but they can also show up in normal ones and the Epileptologist looks at the surrounding factors, what else is going on at the time, are they in clusters etc. I guess some things I do have to leave up to the doctors right?

They woke her with a strobe light, she kept trying to cover her eyes, so cute. Then, it was over. They rapidly (and quite rudely I might add) pulled off the electrodes, wiped her head down a little and sent us on our way.

Paula told me she would keep checking for the results and she would call if they came in that afternoon but to not expect anything until Monday.

In the mean time, she's had more. And Matthew even saw them last night proving a) I am not crazy (though I wish I was) and b) that she was really having them. And I should add a c to it) proving these two things to Matthew (equally as important!). They are heart breaking even though they are small at this point. She just looks at you very accusatory, like you did something to her. "Did you do that? I didn't do that? What WAS that?" over and over... I imagine like a really bad (and possibly painful?) case of the hiccups! Cognitively I guess it's a good sign that she's noticing them this time though right? Last time she just went on with her business... (Looking for a silver lining here people.)

I know that we were lucky to have a full year without seizures. The truth is that IS is so had to control that some people are never able to stop them. Then, once they do stop, whether by aggressive seizure medication, the child growing out of them, or even a hemispherectomy, over 50% develop other types of seizures. We would be in severe denial if we thought that she wouldn't be affected by seizures again given her cute little abnormal brain.

And - At some point I expect the doctor to turn to me and tell me that seizures are something that we will have to deal with. A ton of Dylan's HPE friends have seizures all the time (some, like little Eva, nearly constantly). But again... one can hope right?

Dylie's Uncle Michael was one of the naughty few who tried to talk to me about it KNOWING I didn't want to talk. (Though I should add, HE didn't want to talk either...) He was stunned with the bad news, but thought it amazing that we could be so blessed to have something in our lives that we care so much about that something like this can cripple us, bring us right to our knees. Break us. We are pretty lucky to love this little girl that much.

So, in hindsight? Cathing is a piece of cake, let's not go from bad to worse mkay?

I forgot my camera - So the only ones I have of her with the good camera are ones taken when she woke from her beauty sleep late in the evening. These from my cel phone will have to do!

Someone was losing this battle... and it wasn't Dylan.

She fell asleep while we were eating and there wasn't anything Matthew could do about it. She was out about ten minutes before we were able to successfully wake her again

Asleep in the night vision camera - It was pitch black, but this is what I saw on the screen.

For those fortunate to have never seen an EEG up close and personal, this is what it looks like.

And this is a pretty girls cute face during one round of the strobe light.

Rudely yanking off the electrodes (The girls in the past have been much nicer!)

Still resting eyes...

Finally awake,

But still very tired!

Oh there we go!!

She became very smiley after that! Back to Dylie!

It takes some good solid effort to get the glue out of her hair. She slept from 3 to about 9 with Nick Nolte hair.

And it just had to be documented but we cleaned it up right after the pictures! I promise!

Just add urine...

To the list of things I wish I didn't know so much about!

I just KNOW you're all wondering... the cathing's going as well as could be expected. I have been actually doing it four times a day rather than three because it works into our schedule a little bit better that way. I figured it couldn't hurt and if anything she will probably be more comfortable. It only took a few times for me to easily be able to tell what I am doing. (Read: Where I am going.)

Just like everyone said, it's become pretty quick and part of our routine... I have even shown extreme talent and measured her output the last several times. I will do this to see if there's a particular time of the day, or activity, when she does better on her own. If that's the case, maybe we will be able to cut out a time or two... Not looking like it though, when we push extra water in between feedings things look a little more like they're supposed to look (color wise) and we get at least two ounces! (Lots!)

She likes to kick her legs around, which, for a diaper change is no problem, but for cathing is a different story, she's all about trying her best to NOT help. But would you be helpful? I mean...

Matthew has yet to do it. I don't think he's opposed to doing it if he has to, but a part of him is in denial I think. He's coming around but the hardest part of this whole thing was probably watching him try to come to terms with another "procedure" required on his baby girl. Acceptance of another 'step' in her care is always a little rough, and this is a doozy. In talking to other moms I know I am not alone when it came to helping dad with proper cleaning of the 'hinges' and 'nooks and crannies' of the little gals. When Paula was teaching us he was not looking, it was so awkward for him! And while he's helped but not actually done it, he actually did mention me showing him the other day which is a step in the right direction. He will have to do it at some point, he knows it, but I am happy taking one for the team until he moves a little closer to acceptance.

Preschool was fine, rather uneventful in fact! Last Thursday I dropped Ian off at grandma LouAnn's because I knew I would need to run in with the kids. When in there I was pulled aside to show Ms. Shelly how Dylan is in the walker and talk to her about feeding and stuff. It took a little while so it's a good thing I left Ian. When class was starting they asked if Duncan would be okay going in the class without us and of course, he's fine! So we walked him over and introduced him to his new teachers and he was on his way!

Back to Dylan - I told Shelly that she liked pudding at home, from me, and she's very smart... so if Shelly were to start feeding her and not MAKE her taste it or take bites then Dylan knows she will never have to eat for her. It's important to not stop if you start. This further proven over the weekend when on Sunday Matthew didn't make her eat in the morning so when I had him feed her again in the afternoon she was having none of it! I took over... finally (it was kind of funny to see Matt flustered because he doesn't get that way very often!) and made her eat. Soon enough she was taking spoonful after spoonful. I don't want the gals at the school to make the same mistake.

This morning I offered to come in on Thursday to show them how I feed her. I will make arrangements to not have Ian there, hopefully Grandma's Drop-a-tot will be open for service.

Today I called the manager of the school and they came out to help but Duncan (and Dylan's walker) were off without the invite... he took off. No bye mom, no nuthin'! It was nice having them come out I suppose, I wouldn't mind going in, but if parents call the cops when kids are left in cars I wouldn't want to be in the middle of it! Though, if my aspiring cop brother-in-law is correct, it's not against the law to leave the kids in the car for a minute or two (especially with the car running and no key...) but... oh well! I guess if they're willing to help!

When they brought them out to the car they mentioned transportation... that's right, the short bus. They are obligated to provide transportation for a disabled child if needed but we don't need it in light of having to get Duncan to the same place. BUT, today they mentioned that they could send the bus, when I hesitated and looked at Duncan, they said that they can make exceptions and have in the past. Which makes sense, I mean, honestly... they are going to the same place right? And we live 5 minutes (or less) away! So I will talk to Matthew about that, but... it sounds good to me!! She just kept glancing at my ever-growing belly as she was talking about how much easier that might make it! Sounds promising!

The other fun thing Duncan has going these days is that he is not terribly sure of pluralities of words so he tends to always as an 'es'. For example, he wanted these candy bats, "two bats-es-es" in fact. It's everything too, and I have been correcting him but it's wicked cute. "Watch two shows-es-es?" That and the 'bridges' business have been quite the highlight around here.

Mike comes on Wednesday to work with Dylan again. She has been doing AWESOME at standing everywhere and I even saw her do a side-step with her AFOs on the other day. I think we are just about where we were without the AFOs now. She does quite a bit of falling but bless her heart she just gets right on up and keeps trying.

More concrete work out front, Matthew wants to redo the path to the stairs... it's so silly. He had to repour a path for the drain to drain under the RV Pad they did last year anyway, so I think his thinking was that they were doing stuff anyway, might as well go all out. It looks good though, I guess...

The boys wanted to see the big cement mixer! My brown eyed boys!


They were both fascinated by the big truck!


Watching it pour out at their feet.

An appointment marathon (and some bummery news)

We had our marathon appointment week/abuse our sitter(sister)/Duncan's most fun week of his life week this week. It's not over yet, in fact, it got longer. Soon it will be over though.

Day one:
Starting on Monday we went to Dylan's Endo appointment. I was hoping to get to the lab first thing in the morning, I even got the orders all ready ahead of time (thanks Trina). It was in an effort to not starve Dylan all morning since she had a fasting blood test. I failed though. Between me running late and an accident on the freeway it just wasn't going to happen. We were just a little early to the Endo appointment instead. She did well during it though... I gave her a little more water while we were there to tide her over. We missed Trina though =(.

The appointment was fine, I talked to the doctor about keeping Dylan kind of on the smallish side, and she was really receptive. She had asked us in the beginning to think about how much we wanted to push things (as far as growing goes), so I knew she would be, but it was still nice to get an outsider's opinion. We didn't up her poke dosage amount, normally we would up it to the max for her new weight (21'7' on their scale) but we decided to hold off until we made some decisions. I think we are going to keep going with the pokes, maybe until she's 5... maybe until she's walking... and then decide. We wouldn't want to risk her muscles being effected when this point is rather critical for her. We are just starting to work with Mike, so close to making some walking things happen. One single refill of the prescription has us meeting our 100% out of pocket deductible... but when talking about Meds, we decided a long time ago that the financial aspect wouldn't be a determining factor... so I just mention it more for big bill fun!

After we went for our labs - she did pretty well but walking out she LOST HER MIND. Really, an epic performance. Starving + poke + bowel issues (discovered later in the day) = a really angry little person! She cooled off in the car and was fine for the rest of the day.

Also - we did the fatty liver test but it turns out that may only be associated with the SX13 gene mutation HPE, rather than Dylan's SHH HPE, but I had gotten the information second hand and I wasn't entirely sure. We were doing a poke anyway and Dr. Ped requested the full metabolic panel, so we stuck with it to make sure all is well. I suppose it doesn't hurt just to be sure.

Day two:
On day two we saw Dr. ENT. specifically Dr. Nose for Dylan. This was an appointment her dad was really pushing for because she has such a hard time breathing through her nose. He was planning on going but then had an important meeting crop up and I was on my own. As far as her breathing goes, her Pyraform aperture stenosis repair was done in Dec 2007 when she was a tiny pip squeak... but we hadn't really followed up with Dr. Nose since a few months after and we were probably due anyway.

He asked how she was breathing (bad... and worse on the left side), how she was sleeping (bad... but you know... who really knows why) and about how frequently she took breaths through her mouth rather than her nose (most of the time), and how frequently she comfortably breathed through her nose (rarely). Then he asked how far we wanted to go with this. That question kind of made me chuckle, because her dad was the one pushing and then of course he wasn't there! It was as I had kind of expected, potential surgery again, to remove scar tissue and bore any bone that regrew. Boo to that! But if we think she will be fine without then it's up to us.

He did say she was moving air through both sides, which we wondered, but not as well as after the surgery. He said that her nose was so inflamed that he couldn't see much and there's not even a way to scope her at this point, so he prescribed a steroid that will make that swelling go down. Then we would revisit in a month. Funny the med though, it's for EARS... not noses. He told me if the Pharmacist put something other than nose on the package to ignore it and do nose. Once a day, yucky drops in the nose it is!

Day three (aka: the bummerist of them all...):
We went for Dylan's bladder study and Urology appointment. She got a VCUG, a renal ultrasound and the consult with the NP. Get ready for a water works data dump (as if you didn't already know this about me!).

The renal u/s went well, nothing to report there. She was uber cooperative. Then the VCUG. They take a cath, empty her bladder completely (With a syringe drawing the urine out), then fill it with liquid that shows up black on an x-ray. As a new policy they actually fill and empty the bladder twice to check for reflux issues.Apparently the chance of finding a problem on one fill is 75% but with the second fill it jumps to 99%. Nice! So fill fill fill... HUGE bladder, she gets uncomfortable but doesn't void. (Bad sign.) Visibly very uncomfortable, no void. Finally she let's a little go (judging by the x-ray maybe 25%?) but then stopped when she was more comfortable. They poured warm water on her to get her to go, so she was laying in warm water so then she kept going and going as they were filling. But never empty...

We ran up to Urology (Dr. Pee? Ha!) And she spoke with use about everything. Starting with the good news... Dylan's kidneys are growing as she's growing. There are no signs of reflux to her kidneys at all. A smooth bladder wall indicating low pressure (sometimes when they build up pressure and don't void, the bladder wall is uneven because some of it holds pressure better than other parts). There's no scarring to her kidneys or bladder from all of these infections. No damage at all to any of it and she actually has a great working system, anatomically speaking. Yay for no damage, you can't fix kidneys, you just have to get new ones... so all in all, great right?

Now the bad news... her not voiding completely could be why she's getting these infections. This means we void for her. By cathing her. Three times a day. Big huge old bummer. Truthfully, I kind of expected cathing, I did... I mentioned it before. I think we've been lucky to have avoided it for this long. I have a tendency to look into things and dig dig dig to get all the information out there (surprise!) and I know a ton of SB kids have to be cathed and I also knew it was a potential solution to all of her bladder infections. So I wasn't surprised, but, not going to lie, I am still rather disappointed about it.

With a neurogenic bladder they don't know what's going on, but things change as the kids grow and they just try to stay on top of everything. It can be that she can't empty all the way, that her body is telling her to empty but not all pieces of the water works get the memo (causing discomfort), or if today's incident was just a one-off. we will measure the output that we get at the different times of the day and if we get less at a certain time we might be able to go to just morning and night cathing. It can also be that when she's up and about during the day there's pressure and other things going on neurologically that cause her to not be able to void just while she's awake. She has WAY full diapers over night, so maybe?

Dr. Water Works did wish we had gotten the VCMG which include a pressure catheter so they can steadily measure what kind of pressure's going on in there. They probably should have, but they didn't look at her Spina Bifida chart when they scheduled everything out and they didn't talk to a doctor about it. It's not worth doing again, at least until her SB clinic in May, but it would have been another good point of data to have handy.

She was also switched to a stronger Profolaxis that we will start when she is done with the antibiotic she's on for the current infection. Sometimes that works, sometimes they double up with the one she's currently on, and sometimes they alternate days with the two! Interesting! But for now, cathing and only one antibiotic.

Day four (tomorrow):
Thursday we go for training on how to cath her in a 'Life Skills' class through the Spina Bifida clinic. They will teach us what to do and set up supplies through the home health company. I watched a video online though and I think I am scarred for life. Really. Need. To. Wash. Eyeballs. I will get numb to this right?

Thursday is also the first day of pre-school! A little nervous about this... but we will see how things go and I will report back accordingly! I am dropping Ian off so I can take the kids in all the way for their first day. I am sure Duncan will have the time of his life, just another day on top of the rest of the funnest week of his life I guess!

Looking guilty anyone?


Ahhhh... this is why! I had to switch from over the top, to under which is not okay... but okay for now I suppose!


Brothers spinning in the egg chair! Big fun!

Happy Halloween!

We went trick or treating last night up at Ami's house again - it's become our Halloween tradition. Yummy food, hot cocoa and LOTS of cousins to trick or treat with!

I went out with Ian for a little walk at the start, Michael even took him trick or treating, but we turned back after not very long because it was chilly and Ian only liked it for a little while. He wanted to be carried instead of riding in the stroller! Yea, uhm... no.

Duncan stayed out with the kids though he was a bit behind, trick or treating is hard work for a three year old! He ended up skipping houses, only returning to trick or treating when he needed a new treat to munch on. When they got back he only had two tootsie rolls in his bucket! He had eaten everything else! (Good thing Ian had some treats for mommy!)

He REALLY didn't want to leave Aunt Ami's when it was time to go, I tried to explain that he will be practically living there next week while we go to all of Dylan's appointments, I don't think he understood!

The race car driver!


The tiger


The little Indian girl... as in, from India. Her bangles didn't fit (she grew!) but she looked pretty darn adorable.


Trying to get all three in a shot - They kept distracting each other because all they wanted to do was check each other out!


So daddy did the best he could (notice, only in this picture are they all three looking at the camera!)


Mushi wasnt sure what to think about the new animal in town.


I don't think Ian recognized Michael in the hat, he just kept staring at him (for the record, I have no idea what Michael was, a Mexican bee?)


Imagine this flock coming to your door!


The race car driver and Mario catching a ride, can you blame them?

Hi ho, hi ho, off to the doctor we go... again!!

Yes again, three times in one week... is that a record? It is for us! (Well to the same doctor at least =) ) One of my friends suggested a punch card, I think it might be a good idea right? Is everyone's life like this? I would assume so... yes, let's go with that!

I called about Ian's cough, he had been up all night on Tuesday and Wednesday was worse... then throughout the day. I have a knack for answering all the questions right (or wrong, depending on how you look at it) and the nurses nearly always tell me to come in to have the doctor have a listen. It's not like I was too worried, he was on an antibiotic for his ears anyway. Crappy. But, since I had a paper from the school nurse that I had to have him sign (I got in the mail the day of their well-child), and we have long met our deductible and co-pay for the year, I thought I would run in. Plus, I knew Dylan's culture was going to come back positive and we would need to go get a script anyway. On in we went.

When we got there it was the same nurse assistant as the well-child and she said "You're back!" and I told her we were their most loyal customer EVER!

Ultimately he decided that Ian's ears were not draining... so while they weren't infected there was still a ton of fluid in there and there was no change from when he looked at them on Tuesday (and probably since we had gone in on Saturday). He switched his antibiotic. Ian slept ALL night last night too! Who knows if that had something to do with it. The constant humidifier and the Vicks baby rub on his toes had to have helped a little too. (But even that hadn't worked the night before!)

And yes, Dylan's culture was positive. This makes four break through infections in a row. She cannot go without them. It seems as soon as we finish the antibiotic another one is in the works. I am just so confused why it's like this. She was getting them kind of frequently, too frequently, which is why she went on the prophylaxis. But ultimately she could be without them and the prophylaxis definitely helped. Now this. It's so weird!

Here's me crossing my fingers for a sudden development of reflux. After all, you can take medicine for reflux and that will solve the problem. I asked, not likely it seems... Darn it. I was hoping for an easy fix. We just left it with that we will know more after her appointment on Wednesday. Which can't come soon enough!

I had two scripts, one for Ian and one for Dylan and Duncan REALLY wanted to hold them. I am paranoid about further inconveniencing our doctor so I wouldn't let him. Dr. Ped turned around for a minute and then turned back around to hand Duncan a script of his own. It says "I am proud of you!" it has his name on it and is signed by the doctor! SCORE! Duncan had been telling me how nice the doctor was on the way there, and gave him a big kiss (on his elbow) while we were meeting with him. So funny.

As we were leaving our favorite nurse just stopped in and gave me a pat on the back. I told her that preschool started next week and she said "See you in two weeks then!!" and laughed. Yea yea, funny funny... =)

In the midst of filling the scripts I got a text from Trina who was on her way to our house with the lab order for Monday. Check out the personal service from Dr. Endo! NICE! We caught her just as she was pulling out and she came in for a minute. She makes yummy chicken noodle soup, just like my mom's, and I returned her containers for a refill (ha!).

Oh, and FYI - I forgot the paper I needed the doctor to sign! Grrrrr!

Matthew's coming home from New York today which is AWESOME, I need a nap. He's been gone all week (and what a week to be gone!). And even Delta feels my pain, his flights running 20 minutes early!

Duncan's own prescription.


This is very Dylan - One hand on the music making toy.


Oral fixation anyone?

3 year Ped appointment!

We saw Dr. Ped on Tuesday for our well-child visit... hello, crazy. Three! He was laughing because we were in the tiny room and at one point there was a kid everywhere you looked! I gave in and let Ian and Dylan roam around on the floor. Gross, but this was a battle I wasn't going to win, especially in light of how long the visit ended up taking. (Far too long!)I was thinking 'next year times four!!'

We had quite the list to go over for my little Dylan, we got the handicap parking DMV paperwork so we could go apply for that whenever we want now. Not that we need it most days, but when we do, it would be nice! We got a letter for the Parks and Rec people to get the pass to all the National and State parks. That will also come in handy... she's earning her keep! *wink* *wink* We also got an order for her PT as well as a test for Fatty Liver disease. They have noticed a link with Holoprosencephaly and Fatty Liver and at the conference they mentioned that kids should be tested. It's a fasting test though... so no nutritive food until after the poke.

Beause of that fasting business, I called Dr. Endo to see if we could get an order for the tests that they will be running on the 2nd so we could bundle them together and do them on Monday, before her Endo appointment. That way it will save us from two separate pokes or them having to deal with a starving Dylan. I left a message to fax it to Primary's lab or to perhaps... send the order home with Trina where I could run over and pick it up!! I didn't hear back today but she has until Monday to let me know what the plan is. Fatty liver disease... I don't even want to Google it!

The part of the appointment that took the longest as getting all of their vax's straightened out. The cards weren't up to date and in the last 6 months or so they switched from paper filing to a computer and things were all sort of mixed up. They got it all figured out which meant no more pokes for the kids! I was concerned since their vax cards did show them missing some that are required by the school.

I also had them cath Dylan to culture again... I think the pickle has another infection but it's still earlier than I would take her in. Since they like to make sure they are gone (pshaw...) they like to do it anyway and if it is positive it will save me from a trip in a few days! I didn't hear back today but I wouldn't normally hear back until tomorrow and our Dr. Ped is out of the office on Wednesdays anyway.

Duncan's 33 lbs and Dylan's 21... 7 maybe? Shoot, I meant to note that! I have it written somewhere around here since they give you the chart - and now they are on the big kid chart too!! Again, she's on her own curve but doing well and she's actually gained some in the weight department. I was a little afraid she wasn't. And I was already bracing for night pump feeds, but yay! Double yay! She's doing well, in spite of her crazy schedule and sometimes missing feeds due to napping. I mean, there's only so much food we can pour into her! And I know we are lucky, l u c k y, that we can bolus feed!

While we were there he asked about Ian since he noticed we had been in over the weekend. He grabbed him and took a peek in his ears. He said there was still a lot of fluid but it was clear now so he's on the mend. I was grateful he took a look in there, un prompted... and not paid for. He's great.

On Monday we have our visit to the lab and Dylan's appointment with Dr. Endo. It's a regular appointment though, they will just measure her and up her meds if she's big enough. Tuesday we have a daddy anticipated visit with Dr. ENT as an over-due follow up to her pyroform aperture stenosis repair. We are probably supposed to go in once a year for that and it's been only... oh... two and a half maybe? She really can't breath through her nose but I don't think there's much they can do about it. I could be wrong though, so Matthew had me set up the appointment. On Wednesday she's having her VCMG, bladder x-ray deal-e-o, and then the bladder study which I assumed were the same thing but the Urology department had me set up two different appointments (8:15 and 10:00). Also after a shorter appointment we might run to GI so they can measure her button since we haven't done that in 6 months or so. She's been in the same button size since they put it in... she was short and fat and now she's tall and skinny!

All three appointment days the boys will be staying with Aunt Ami. Hooray for her living on the way to the hospital and actually liking them enough to deal with them for three days in a row. I swear I am not trying to change the her liking them part by a little over-load... hopefully it will work out and in the end she will be willing to take them again. I think Dylan's Spina Bifida clinic is due in December!

Today I gave Dylan an oral feeding of Lemon pudding in which she was like a baby bird. From the first to the last bite, full on open mouth. No singing, no music... no first taste! I was so impressed I decided to try the cup with the thickened liquid and she drank a full ounce, a drink at a time. Also opening her mouth like a little birdie. I think she would have even done more than an ounce but she started to get tired of me and I am trying to keep things pleasant, especially when she does so well!

I took pictures, she was beaming! I think she was pretty darn proud of herself! (Or she could tell I was!)


So I just kept taking them...



And taking them...


Isn't she cute?!


And, on a more serious note... not sure what this was all about, she was deep in thought. Notice no bib though, this is HUGE. She started drooling like crazy nearly a year ago and it's slowed up in the recent weeks. *knock on wood* not sure why... but, we are loving it! Hooray!


This kid emptied the wipe box out one wipe at a time, and I was right there! He was too quiet, I should have known! He was also very proud of himself but none of the pictures of him on his back, smiling with a waving wipe in each hand, turned out.


Does he look as guilty as he was?!

Getting our cake on!

We had a little get together for yummy cake and ice cream (and yes... more presents...) for the twins on Saturday and it was good fun. I still can't believe they are already three!

The cake was only slightly better than last time. I had contemplated going all out and getting a really cool, really nice cake, but then I changed my mind. whatever happened to my idea of being low-key until they make me do something otherwise. ("What? You are supposed to have friends over for birthdays? Mommy never knew!") So we just went with a generic Buzz and Woody cake. They were out of Thomas... Boo.

Woody looked like he had an accident when traveling to the 'throne' but at least it was something slightly better than what I would have walked in to the store the same day to get!(Oh my gosh... after all that? I FORGOT TO TAKE PICTURES OF THE CAKE! Whoopsie!)

Duncan hadn't yet gotten over the thrill of the new train mom and dad got him the day before when he got yet another one from grandma! We kept trying to get him to open the other presents and he would look and go "Yay, more presents!" and then "TRAAAAIIIIIIINNN!" as he would look back at me trying to fight the new train out of the box.

So funny. It was a little bit of a battle getting him away from the trains and then to bed. He's in love, we really won out in the train department.

He did take a little bit of a breather from the train this morning to discover some of the other presents. He got a cool garbage truck (recycle truck?) which is great because we go watch the garbage truck every Friday that we can actually catch it doing it's thing. FYI - The little person that came with the truck he is calling the "Garbage boy" rather than the garbage man, ha! Also some big lego blocks which came with a car... that get this... connects to a car that he already had. So another train? Winner!

Dylan got a crazy baby that I swear is alive and watched us sleeping. I am not sure what set the thing off but I am pretty sure lights and movement around it do? If you flip on the light it gives it's creepy giggle and a wiggle. (Yea... uhmmm. Thanks? ;) ) She got more great music toys too.

Ian is really loving this birthday thing! He thinks that there needs to be a birthday around here ALL the time because he is enjoying nearly every one of Dylan's toys! Also Duncan's garbage truck if it's within reach. We got Dylan a cube chair (she does really well sitting in them) and Ian thinks it's his personal walker. He's also climbed up on it... and fallen, several times.

Friday he climbed up and over a stool and cut above one of his teeth. It bled... a lot... marking the first time his mom has seen a self-inflicted owie on him, ever. Boo. I am sure there will be plenty more to come!

He didn't sleep well that night and I wasn't sure if it was just his face being sore of if his ears had a little something to do with it. He's been playing with them a little since the last infection but I know these things take time to resolve so I wasn't sure but decided to run in to the doctor and sure enough! Both ears. The doctor said if it wasn't what had kept him up the previous night it would have kept him up that night... so it was a good catch. Ian was really, surprisingly cooperative with the doctor through all the checks too. He was being very mellow.

This kid loves opening mail - I figured grandmas and grandpas wouldn't mind if he helped Dylan open hers too!

Told ya.

This toy isn't made anymore - Dylan's VT brought it over ad I loved it so I hunted one down!

Creepy baby stare down. Look at Dylan's furrowed brows!

Awwe, a love! Or a drooly one puffed up cheek zrbt.

Oh... she looooves the creepy baby!

Ian loving this birthday thing!

New traaaaaiiin!

It's all about the cards I tell you... and this card from Jessica was ADORABLE, he loved it!

Getting into a present as big as he is!

Is this excitement or what?!

Ian can play with the toys too!!

I want to play too dad!!

He kepts putting one little teeny finger in their mouth...

Everyone wanted a turn with these! One was from Aunt Traci and Uncle Shane and the other one Dylan bought herself with some of the money that fell out of those envelopes! They harmonize, we had to get two!

Checking out the new Raggity Ann

Wish I was closer... but I couldn't let on to the picture taking. She's playing with Shane's phone...

Telling stories to grandma

Showing how it's done

So, SO mad this is blurry!

I snuck in to take this a few minutes ago, she is snuggling with her Dressy Betsy!! So cute. (FYI - The flash set off creepy baby! Creeeeepy!)