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?
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.
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.
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!)
I often frequent several blogs of people that have children with special needs. In the broken kids blogging world there's been a bit of buzz around this particular blog post. (Copied below but here's the link if you're interested.)
I love Welcome to Holland, but I do always get held up right about here: "And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss." Because it doesn't say enough... not enough about the initial flood of emotions that you feel when you land in the airport. Oh sure, we settle in quickly and love ushers us through... but the initial shock of it all it hard to put in to words.
I didn't find Welcome to Holland until well after we were out of the airport... truthfully, we didn't spend much time there, but it certainaly wasn't pleasant. In fact, from what I can remember...
Here's the best attempt I have ever seen: To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
Yay! My big two are three today and I can't even believe how time has flown by! Wasn't it just yesterday that I was leaving you guys behind in the hospital and trekking home? I swear it was, this is just no fair.
Duncan's Favorites Favorite toy: Trains, anything trains. There's one particular engine (and cart!) that you have to take with you when you take naps and go to bed. We know you're playing in there... it's all good. Favorite saying: Two big kisses! Favorite foods: Candy (will this ever change? He is my kid after all...) and chicken. Freeze dried strawberries too. Oh oh... cheese! And Pepperoni! Favorite things to do: Be with daddy, especially if it involves going in daddy's truck! Also, going to grandma's and Aunt Jill's, you ask nearly every day. Least favorite food: Vegetables Favorite show: Thomas the creepy tank engine and friends. (Hooray for next year when he can start answering these himself!)
To my sweet big boy, I had no idea that one child could show so much love for another this early but Duncan has definitely proven to me, already, that he will be one of the kindest most caring adults. Just like his daddy! You are so funny, you have the most telling face ad can give the cutest, silliest and most grumpy looks. It's fun to have you repeat everything we tell you to, we know that will end soon so we are really enjoying it while we can!
Dylan's Favorites:Favorite toy: Her soft baby dolls Favorite Foods: Butterscotch pudding, Lemon pudding and cinnamon apple sauce (this is new!) Least favorite food: No idea, we give the gal what she wants! Favorite things to do: Play musical toys over and over and over again. She is so smart, she knows when the song is going to end so she puts her and on the button a few notes from the end so she's ready to push when it's over. Take toys away from Ian (this is a great game you two have going). Kiss her babies. Least favorite things to do: Get her hair done or be cold, she no likey. Favorite people: Her daddy and a few of her favorite uncles. She does get pretty happy to see most everyone in her family though, aunts and grandmas too. She also loves Pat and Linda who've managed to get her to do things while still staying on her good side!
And my baby girl, Oh sure, you've been throwing some doozie of fits over the last couple of days but you can't get to me. You just can't. I love you, you have taught me so much about love and life, and it doesn't stop there. You started proving doctors wrong minutes after your diagnosis. You have given your family (and your HPE family) so much HoPE for what their children can and will be. It has been a big year for you, last year you were barely eating (if at all), you had just kicked nasty seizures, you were crawling in circles... We love to watch your progress. You're whole family loves you so much and we can't wait to see where you will take us in the next year!
So, once again, to my big first babies. I love you so much, you give me hope, you are my inspiration and I am always amazed at your kindness, courage and love. Two big fat kisses to you both! Love you with all my heart.
On Tuesday we had another visit from Mike, Dylan's new PT. His first question to me was if Dylan's still standing up to everything to which I responded that she wasn't doing it any more than before, but yes. He asked me if I had still been corralling her and I admitted I hadn't been as great at that... he was forgiving, but he said we need to get right back on that again. It's what made a huge difference initially, I just need a pep talk every week or two to keep it up!
She has been in the stander, points for that? Though, not three times a day, I try to preserve Ian's fingers and toes and half the fun is her riding around in it while Duncan pushes! So, she has to be awake while Ian's sleeping for it to work out perfectly... excuses, excuses. She really does like the stander though!
I explained my frustration with the cruising, side-stepping, it was so hard for me to work with Dylan on this because she just does not get it. She doesn't get the shifting the weight... she's not all about it. It's reminding me of early feeding days when I gave up and Pat said she didn't blame me, we weren't getting anywhere and we needed to try a new strategy. Hard to work on something that's not rewarding when usually working with Dylan is VERY rewarding.
He said "What do you mean, she just went to walking?" As Dylan took like three steps along the kitchen chairs we had lined up. Well... no, that's not what I meant. Silly girl, showing off... She just does better facing forward, not side stepping so when she kind of turns, she kind of goes. She's been doing better with the walking when we hold her hands, but the motivation's the key here. (Hence why the corral is so important.)
He commented that she seemed better in 3 or 4 four different areas so even though I was hard on myself for not making her corral, whatever I was doing was working. (Big fat news though, it's not me!) I guess when you see her every day it's hard to see that she's progressing and that there's a big difference. He saw it though... at one point she was up on one knee, sitting there, and he was saying how much hip strength it takes to balance like that (try it... it does!!) and that was definitely an improvement too!
There was a TON of information covered in our time together, he went in to a lot of detail but said he normally doesn't but it seemed intuitive to me so he explained a lot of the science behind it. PT in my future perhaps? Not so sure about that... but I like the details and apparently he could tell.
He had me try the tapping thing he did last time. If you remember his hands were moving like mad, tapping and pushing and grabbing to get her to stand. They were really going. This time he had me try and I could totally do it. Which he pointed out I would have never been able to do last time because she's much more stable this time. She was... it was only a tap here or there and she would stand on her own.
My take away was to take one hand and help her shift her weight to the opposite leg as she walks toward me (a binki in my mouth is a great motivator for this... backwards of course!). He said not to relieve any weight, don't make it easy, she needs to learn to move her weight. If she loses balance on her weight bearing leg I am to grab it with my other hand to give her stability and assure her she was okay. Then, as she brought her other leg forward I switch hands, to shift the weight to the other leg. It's quite interesting... the goal was to keep her moving, and not relying on how much support I was going to give her. Use two hands and kids tend to drop their legs out from under them knowing you'll catch them! She did very well. When Matthew got home he asked me to show him and we did it and she took four steps toward me! He was very impressed!
Pretty good because she's not feeling very well and has been pretty crazy grumpy for about a week. We even had to bust out the magic pills Trina gave us to get her feeling better! Those things are amazing, I am telling you... I wish we all had pills that help us feel better quickly but I guess our bodies are supposed to do that for us where hers won't! Her poor little bowels have been completely whacked because of the last antibiotic too.
I inquired with Mike about a wheelchair because he had mentioned it last time we were in clinic and he looked pretty stunned. He said he was really on the fence with her about it and if he pushed it in clinic it was before he saw her in home and realized her full potential. He's really thinking she probably won't need one at all. He said giving her one at school will just let the teachers be lazy, since our goal is to not have her in wheel chair that would be the wrong way to go! He commented about it being a terrible alternative to a stroller but we could pursue it if we wanted. Uhmm... if you think she won't need one we will go with that! If we start leaning that direction he said he would find a loner for us to try out.
Speaking of school - He offered to go to her IEP, CURSES, it's over! I love that all of these people wanted to go to her IEP to advocate for her! Pat, Linda and Mike all offered! He talked about setting goals to make the time she receives longer... that way if she doesn't meet the goals it's on the school for not providing the services required. Not as big of a deal when she's three and going for a couple hours, twice a week, but when she goes more we really need to push for good goals. Interesting! So I told him I might take him up on his offer later.
Monica asked if this was the end of therapy or if she gets some through school which is a great question. It's the end of therapy here in the home that the government pays for or subsidizes (we had a small monthly fee through IE but it's on a tiered scale depending on income and number of kids). She will get some therapy in class but not a lot. She gets a half hour a month of each OT and PT and speech offered a half hour a week (I think...). Speech is going to focus on communication more than actually talking at this point. For most of it they will come into the classroom where there will be a couple of kids who need services but occasionally they will take them out. Apparently the structure that's set up in schools now is for the therapists to teach the teachers how to work with the kids and the teachers do most of the work. No pressure teachers... sheesh, this hardly seems fair doesn't it?
Hence why we are pursuing Mike outside of school and we will likely pursue speech and OT when the time comes. Mike said it's likely her gross motor will far exceed her speech and fine motor and we will probably have a problem getting her to sit and focus on learning to sign and other things because she'll be so good at being on the go. He said we will have to get chairs to strap her down to learn... I told him I would forgive him if he could get her walking.
Matthew's ready to have weekly PT regardless of the cost (anything for his baby girl) but Mike said with the progress she's made in the last two weeks it's fairly obvious that there's no need to break the bank with him and twice a month would be fine. FYI - in case you're curious, sessions cost $125 or so an hour with a discount of 15% or so if you buy four at a time. Because he's out of network Insurance will pay 70% of what the insurance company deems is an acceptable rate (possibly... probably... not $125 an hour). It's still not a HUGE expense for us, we will no longer be paying IE, and it will benefit her greatly... it's also not going to last forever. It really helps you feel blessed that it's not a great expense though there are in network therapists for those who can't pay out of pocket (Medicaid and such will pay for therapy for those that qualify).
Mike mentioned maybe a month of intense therapy next year if she's close to something, only then should we do once a week for four weeks, but other wise weekly is probably excessive.
11:00 is also a bad time for Dylan, but it's all he's had available so far. At 11 she's usually just winding down. (Though she did sleep like a baby after PT yesterday!) She's much better first thing in the morning. So he's offered to schedule her sessions early in the morning, on a day he doesn't normally do therapy for his business, he will come to our house at 9:00. It's not a time on his calendar but he said he would schedule it for us. We have the 10th and 17th set up for November and then she will be off for Thanksgiving, we will probably do the same thing in December.
I have to be honest and say that I have been totally overwhelmed with his kindness and flexibility. I have so many things up in the air with regards to insurance, how much they will pay, how to submit claims etc. but he's made me feel totally comfortable on how he will work with us in getting things done. Also his willingness to work on a day he normally doesn't and even come to our house, something he normally doesn't do. The offer to advocate for her at the IEP? Amazing. Whenever we get overwhelmed with someone going out of the way for us it makes me a little teary...
He asked if I was having withdrawals from IE since most people really have a problem with leaving it at this point. I mentioned how I would miss Pat but I know she will always be there... other than that, I wasn't fond of Sarah and was severely under-impressed with Group so I was okay with things. It's a new chapter, but I am not change averse at all so I think we will come out on top. We always do.
In other areas - We scheduled Dylan's bladder study for the 3rd of November. We plan to thoroughly abuse our sitters that week (*wink* *wink* Ami). Dylan has appointments at Primary the 1st, 2nd and 3rd. Matthew has the 2nd and 3rd appointments scheduled off from work, so we can divide and conquer those days if necessary but we tend to like to go together. Especially if the bladder appointment will result in a cathing lesson...
She's also eating like a champ. She ate for her dad the other day, and she'll eat for me as many feedings as I want to give her during the day. We always do breakfast but the other meals are a bit sketchy depending on what's going on. She's really been quite good about it. The gal loves her lemon pudding, what can I say!
As for the boys...
Ian's started crawling, just in time too! He's been cruising like mad and he's started planing, which is my new word I have learned. It means walking against a flat surface, such as a wall. (See, we learn so much!) He's the happiest little guy in the world and he rarely cries... so there's nothing else to report here. Thank goodness for easy little people!
And Duncan who is now my big boy (ask him, he'll tell you) is doing great with his potty training. We even went to both grandma's this weekend with big boy's on... this is great because as you probably know, boys get distracted when they are having fun and are busy. He did perfectly, we haven't had an accident in a while (knock on wood).He even takes naps with a dry diaper. Number two is still an issue... but he usually does it in the morning when he has a diaper on from over-night. He doesn't want to tell us when it's going to happen but if we catch him he will go on the pot.
He says everything now... and we realized fairly quickly that when he says bridge it sound much more like a certain curse word so daddy's been having a blast with it. "See ya later bridges!"
He also thinks he's quite big for being able to put his milk away in the fridge when he's done with it. And get it, and put it away, and get it, and put it away... it's a work in progress.
Another crazy long post!! I just like to remember almost everything and jot it down for future reference... and all four of my fans are just along for the novel!
Ian in circles. I could have filmed forever but I was afraid something bad might happen so I had to put a stop to it.
It's a BIG month for us! Dylan is transitioning out of EI and into preschool and what that means for us is some very sad goodbyes! Yesterday we had our last therapy session with Pat who many of you know has been with Dylan since just days after she was born. She worked in the NICU where Dylan spent a couple months and then was assigned to her through Early Intervention. That's THREE years of Pat. Then nothing? What? Withdrawals anyone? So we said a (sort of) teary (kind of) goodbye yesterday. It wasn't a huge mess, just a little one, because we have been with Pat so long she's actually a friend now, and we just couldn't let go... not even if she tried to get rid of us. She is my friend on Facebook, so that means we *are* friends right? Right?
This morning we said our (kind of) goodbye to Linda, Dylan's Vision Therapist, but this one's only kind of a goodbye because we will see her at least one final time at the EI exit meeting on the 21st. Then it will be for real.
I can't imagine being in their shoes and having to say good bye to some kids that you really care about all the time! I mean, imagine seeing some of the things they have seen! We can witness only our little miracle gal, not many little miracles. Amazing.
We got a gift for each of them, an adorable 'hope' necklace purchased from a great store on Etsy that does fundraisers and donations toward adoptions. I had purchased one, then requested another from the people who run the store. They posted up a few other 'hope' options and we picked up the other one.
I felt that 'hope' was pretty appropriate. As I have mentioned before HoPE is pretty commonly used by HPE families. A doctor encouraged parents and therapists to be the 'o' in 'HoPE' and I think we found a couple of the best 'o's evah!
So, boo to goodbyes, as we move on to our next adventures.
Meanwhile, I think Dylan is going to skip out on her last two sessions of group. Bad mom. But Matthew was off work all week and I had the opportunity to sit and watch Dylan in her session (and be annoyed by one of the most irritating mothers ever) and I didn't really like what I saw. After talking with Pat, who has been in the room during a group session before I realized that the people were just moving her little body through the activities. There was no engagement. She is with a different person each time, they don't know her and worse... they didn't seem to care.
Her 'person' put her through one side of the castle, walked around, grabbed her... put her on the mat next to it, walked around... grabbed her off. No time to play, no interaction. At one point she was reaching to play with a wheel thing on the play castle and they snapped her up... no time to play. At the end before they sing "Wheels on the Bus" They give them a choice of cards... she actually looked at them each, contemplating her choice (the only time Pat said she was actually engaged) and they chose for her, not giving her enough time. It's likely designed for autistic kids, not little Dylans, and there's not a whole lot of flexibility in the routine.
One thing's for sure though, she LOVES the therapy swing!! They have a platform swing and you can sit or lay on it and it swings, not just back and forth, but all different directions. Big fan. BIG. In fact, I think if her dad saw how happy she was when she was on it we would probably have one hanging from the living room ceiling. I still think she might get one, but perhaps it will be a little more out of the way. Pricey little suckers though!
Big news for the little guy too, Ian started cruising around the furniture and bridging quite nicely over the last week or so. Naughty little boy! He's going to be walking soon! Dylan didn't quite keep up with him like I would have hoped, but that was some fast learning so what can I do?
Not too much other than that. The two boys have terrible noses and coughs and it seems Dylan's on their heels. Hopefully mommy and daddy will avoid it but Duncan's a pretty affectionate little guy and will all the 'two big kisses!' going on around here I am sure we will follow shortly.
This is where the cruising started, he was holding on for dear life and walking all around the kitchen leaning on the tractor.
He cruises to the edge of the couch...
And then stands and yells for me because he can't go any further. Stinker!
And even though he's almost three... every once and a while... Do you think he will do this when he's 16?
We had another PT consult with Mike - Dylan's new PT when she graduates from EI, on Thursday. In fact, it was quite the day with OT and PT, then dinner and flu shots for the kiddos. All on top of Grandma Shirley's birthday!
Anyway, it was the first time we have seen Mike since the walker and he was so funny about it. The very first thing he did was pop the sling seat out of it. I was like... what the...? She doesn't walk when holding on to our hands, what makes him think he will be able to get her to walk with the walker? His analogy, "What makes you use the back of the chair?" Me, "I'm lazy." Him, "Because it's there." So, basically, if the sling's there she will rely on it.
So he had her walking toward me and her baby on the couch and he shifted her weight, and the walker... to get her to take step after step. It was a lot of work though. And, truth be told... a huge step when she hasn't learned to shift her weight by side-stepping and cruising on the couch. He said the big push will not be to use the walker to go forward but we should be working on cruising.
So, he pulled out a couple kitchen chairs which seemed to be the right height for learning to cruise and set some toys off center. She does not get shifting her weight to the right, to move her left leg over to travel to the left. If you shift her weight to the side, she automatically turns to that side thinking that's the direction she will be going. So it's kind a cognitive jump here to get her to learn the right way to do it. Ian is actually at the very same stage of learning to cruise right now, how crazy is that? When she gets the cruising and shifting weight thing she will start to get the turning and moving forward and that's where the walker will come in.
He said the sling puts the arm rests too high for her to get the right leverage to best use her arms anyway... but if they want to use the sling in school to have a safe place for her to be, as well as help get from station to station, then that's perfectly fine. As for really learning though, no sling. Interesting.
Mean while, as I mentioned she does seem to be getting better at holding our hands to walk one foot in front of the other. She hasn't really done this before but we did it the day Mike was here and Matthew and Michael both got her to do it on Friday so that's another way we can work with her. I was pretty excited to work with her on side-stepping today but Ian woke her up really early (and then went back to sleep (grrrr) so she's bombed out in bed right now!
Mike also did some weird sort of neuro tapping thing where he stood her up in front of her and basically kept tapping her and grabbing her hips and shoulders and tapping some more. It was the wildest thing, but... she loved it!! The tapping was to kind of counter balance and the grabbing the shoulders and hips helped to 'ground' her and help her be aware of where her body was. After a lot of tapping he would go hands off... and there she was. Standing, unsupported. Just for a second or two... but nice right?
He would also play with one leg sideways and up in the air to test the different muscle strength in her legs. He said her muscles aren't as impacted as most kids' with similar sacral problems and went on to tell me which nerves for which muscles are where in the back. Apparently Quads are lumbar and calves and glutes are sacral? So, for her sacral issues, her muscles are quite good actually. Fascinating, really quite fascinating.
We spent a significant amount of time discussing billing and getting his services paid for, at least somewhat, by insurance. He is out of network so they will pay less but I think he will be worth the hassle. He's really aggressive, which she actually likes quite a bit, and needs. He will push her really hard and he knows the tools of the trade, as far as walkers and wheelchairs and things like that and he will help facilitate everything we need. In fact, he was the one at the Spina Bifida Clinic that pushed for getting the AFO's. He even mentioned hinged AFOs next time depending on where she's at. So, pay we will, pay and fax and fax and pay. He's used to working around the insurance companies needs and it sounds like he will be accommodating there.
He said if at any time we decided he wasn't right for her it would be fine... but I think he really likes her. She's very responsive to the things he does and in 45 minutes of working we can see these enormous improvements. Not every child is like that so I think it's somewhat rewarding for him as well. "I think we get along well, right? Don't you? We do right?" Yes Mike, yes... you do seem to get along quite well. So funny.
He was walking to his car commenting about how she's definitely going to walk, again, in amazement. "This kid's gonna walk!" He said he would have never told us three years ago when he first met her but there's no way he ever thought she would be a walker. Yes! That's my girl! I think it will be a lot of work for all of us (and money too =) ) but it's going to happen!
We went for flu shots that night and I don't think we have ever seen Duncan so insulted as when our favorite nurse gave him his quick poke! I had been preparing him for his poke all day but it didn't soften the blow. I explained how it would make him not get sick, daddy kissed some tears and it was over. Cute boy. Dylan's reaction isn't really worth a mention... or maybe it's more so? She squealed and then it was over. Cute girl.
Friday morning I ran Dylan in for another cath to see if she has another break through infection, and... well, yep! She does! That's three in a row with about 3-5 non-infection days in between. Her doctor is so different from the others though... when the 'dip' came back negative yet again he still was quite morose about it, not knowing what to do. He trusted me, enough to write a prescription to fill in case it started growing something out by Saturday. It took him a minute to find a med she hadn't been on recently.
We are going to have to move up her bladder study that we would have done in January or so in coordination with Spina Bifida clinic to see how we can treat her. He mentioned cathing as a possibility (nooooooo....!!!!) if she doesn't completely empty her bladder on her own we would just do it for her a few times a day.
I really think the bowel thing is a factor. Before she would be going all day and we would change her all day so everything was somewhat isolated to it's own area... with the bowel routine she has a couple really bad diapers once a day, within a half hour usually. She doesn't stay in them long because honestly the formula she's on smells so friggin foul that we change her the instant we smell something. I will have to call Dr. GI to see if we can somehow modify the routine to help isolate the problem to one end of her diaper. How's that for trying to not use gross terms?
All the while Matthew says I am starting to get cocky =) he said I am willing them to happen so I could be right because I am so impressed with myself. This one we caught early too, I would have waited until Monday to be sure if Matthew hadn't have had Friday off for Dylan's IEP. Poor baby... so we will fill the new script today and cross our fingers that whatever they identify tomorrow will be susceptible to this med. Bah!
On to Dylan's IEP - Such a Dylan centric post today right?! On Friday LouAnn took the boys while Dylan, Matthew, Pat and I ran over to the preschool to talk about what services Dylan qualified for and see what goals they had for the year.
She didn't qualify for vision, not a huge surprise there... but she will be getting a OT, PT and speech. On her IEP they've put in a whopping half hour a month of OT and PT! Half hour! That's so crazy don't you think? They say that that's a minimum and they will give her more, but they have to put the minimum down. Yes, I could have argued for more but I think when they get working with Dylan and see how well she responds when people work with her (and of course how charming she is) they will want to work with her more. It's just the way it usually goes with her. She is far from being a difficult child to work with.
Further evidence as to why we pursue services outside of the school system.
We then went over her goals and they have some really aggressive goals for her! The OT not only mentioned removing a peg from a peg board, but placing one!! I told her that was a BIG goal for Dylan and she said "we have BIG peg boards!" Yes! I love when people recognize her potential! The PT went with standing unsupported and taking several steps with her walker (I think it was 25 feet?!). I think Sarah had a tendency to only write goals on the EI sheet that she KNEW she would meet and she did not consider stretch goals, they definitely do not have that mentality at preschool!
At one point Matthew mentioned I was over-whelmed with the pick-up drop off situation and they said that they would come out and get the kids! The manager gave me her cel phone so I could call her when I got there and they would come to the car. We just need to figure out how to work the first couple of times so I can take them in and say goodbye and have them get to know the ladies but after that they would help. Apparently they have had parents call the cops on other parents who have left their kids in the car, even if it's running. I am not too worried about this in the back parking lot, but they couldn't allow it if they knew I was doing it so they would work with us.
My big kids won't start school until November 4th. They have their well child on what would have been the day they started (the 26th) there's no school on the 28th, Dylan has an ENT follow up on the 2nd which brings us all the way to November 4th for their first day! It should work out well though, I can get their immunization information straightened out by then. Dylie's card says she's never had the chicken pox vax (which I am pretty sure she has) and Duncan's card says he got it before he was born! I will have to check on this on the 26th!! It's been added to my long list of things to talk to Dr. Ped about (it's actually quite the list!).
We need to find two itty bitty back packs for them to put a couple diapers and a change of clothes. So cute. Not sure where to get them this time of the year but... we will go a hunting!
Tuesday I went with Jill to take pictures of her kiddos, we went to an old run down building and to some random trains abandoned on some tracks. It was quick (and dirty!) but we got the job done and I think they are so cute! After I deleted all the goofy faces and closed eyes Jill had 409 to go through to pick out her favorites... I was telling her, I think that's the hard part. You don't pay for a photographer to show up with a camera, you pay for one to go through all the crappola and find the good ones! I leave that up to Jill, and when she's decided on her favorites I will crop them, size them and maybe... just maybe lighten Roman's dead tooth. Highlights to come as soon as she's had a chance to weed through them. I told her of 409 pictures 250 of them were Mallori alone, and they are cute! So, uhm... good luck with that.
I could be deadly if I knew a little about photography and lighting, all I know is art... but it's gotten me this far so eh, no need to push it. That's all I need is another hobby!!
I have put Dylan in her walker a couple of times this week and she's really cute in it. I think the hard part is having her find the motivation. Nothing's really that height unless I am holding it and she's not responsive to "come here!" yet. As is though, she does seem to be getting the "one foot in front of the other" even if she's just responding to the moving walker, which books it, it move fast! Sometimes she can't keep up and she tips forward, it's cute. I just put her 4 feet back and hold up her beloved baby and she will go for it. It's cute.
Mike is coming tomorrow to do his first consult of two before we have to pay the big bucks. Hopefully he will help me find her motivation to move in it and also make sure everything is set up right... maybe that's the tipping problem? Or she's just having fun and taking it for a ride? We shall see.
In the meantime, Duncan's turning into a little boy... he's getting a little sassy! If I get after him, like... for example saying "Don't go potty in your big boy uderwear" he said "O Kaay-yaaaay" all sassy like! What?!
