Preschool Part 1

Today was our big "phone interview" about Addison, Early Intervention (EI) and (gulp) Preschool. In PA, EI goes from birth to 5, but at age 3 it transitions from "in home" to "on site". Currently Addison gets OT, PT and SI (Special Instruction) a few times a month at home - or the park, at a restaurant, or any other setting she may struggle with. At age 3 it will then become an educational setting and look more like prepping her for what will be expected when she starts Kindergarten with a side of any PT/OT/Etc., provided that she qualifies for it. Or it could become on site where I'd just take her in for appointments for PT/OT/Etc. Just because she qualifies now, does not mean she'll qualify for preschool. Different assessment and rules. And yes I realize it makes no sense whatsoever as to why if she doesn't qualify for preschool but does qualify for PT & OT still that I would then have to take her in for her appointments vs her coming here. (And I know some places actually do on site therapy from birth, but that's not ever been the case for us. I am greatful for that.)

So today we talked about what I should expect in the coming months as they prepare for this change. And we scheduled her formal preschool eval. That will happen in Nov (when she is 2yrs 9mths). I will find out that day if she qualifies for anything further and how that will be handled. I cried at the end of this phone call because um, yeah...I am not ready for my babies to go off to preschool these two are not ready for preschool.

Now - some of you maybe wondering about Blake. As for now we have a few options. Currently he receives no EI services (he was discharged shortly after his first birthday). He part of what they call their monitoring program here in PA, where I fill out questionnaires periodically in regards to his development and if they see concerns they will offer an eval or if I have a concern in the interim I can request an eval. To date, he has had no developmental concerns. At age 3 we will have him evaluated under the preschool guidelines to see if he qualifies for services at that point (unless we have a concern sooner). 

If he does not qualify (and Addison does) then we have a few options. This all really depends on Addison though and what parts she is eligible for. A.) He could be allowed to partake in the same preschool/class as Addison and be the "class model". B.) They would go to separate preschools. C.) We can opt to forgo EI Preschool and enroll them both in a different preschool that is still a part of EI but also allows for community kids with/or without delays. Now should Addison NOT qualify for any services, we'll be looking into preschool at the same preschool as mentioned in option C or elsewhere.

So that's where we currently stand with all that. Did I confuse you? Because I am still scratching my head about some of this.

If you have experience with EI in a different state - how does it vary?

How We Tube Weened Addison

(Updated 9/29/2013)

This post (and the ones that will follow) are long overdue. Almost a year over due in fact. But first lets back up and recap a little first in case you are just finding this blog and you are looking for guidance (or support).

Most importantly - we did this under the blessing of our Ped (who slightly disagreed with our GI, whom we too did not agree with), and Addison was monitored every few weeks for weight gain. (Plus I may or may not have weighed her every few days at home.)

For our first time readers - Addison is a twin, born at 26 weeks weighing 1lb 10ozs. She spent 153 days in the NICU before coming home to us with a G-tube (and Nissin Fundo). With the exception of only TWO horrifically failed attempts in the NICU, Addison had only ever been fed by a feeding tube. In the NICU it was decided that due to terrible reflux, a Cleft Palate and a very uncoordinated suck/swallow reflex she was unsafe to feed orally. From the day we brought her home we spent countless days in therapy and working on oral stimulation and slowly working towards oral feedings.

She came home from the NICU being fed overnight as well as every few hours during the day. After a lot of research and consulting with our Ped, we made the very conscious choice to begin decreasing her overnight feeds by adding 5mls to each of her day time feeds and decreasing her overnight feed by 20mls a night. We increased those day time feeds by 5mls every 3 days as she tolerated it. If she retched a lot or seemed uncomfortable we'd hold steady and try again a few days later.

After her first birthday and her Cleft Palate repair, we condensed her feeds again, down to 3 a day at 8 ounces each. It was at this same time that her GI decided we should change her to Pediasure to one with a higher calorie content per ounce, and began working even more aggressively towards eating orally. Once she was able to take more then one bite at a any given time she had another MBS (Modified Barium Swallow) to make sure she was safe to feed and not aspirating, that came back all clear and it seemed the only thing standing in our way was the fact that Addison was just simply not hungry.

On Oct 25 2012, we had an appointment with our Ped to address Addison's sudden and dramatic weight gain since changing her formula. We talked in depth about Addison's progress, she was now eating up to an ounce of purees - twice a day if I was lucky, and how she always did best in the morning after not eating all night. It was then that our Ped said, based on all the information I was giving him that we needed to consider that developmentally we were slowly closing in on the window of opportunity where Addison would learn to eat. It was time to push her hard.

Mind you we had moved to a new state just a few weeks before this and had no OT to work with us on this initially. (We were still commuting to see our old Ped though.) Our OT from our old home was great, and helped us so much. It's with her help that we made it that far.. but what now? I was flying solo. Thankfully I had a lot of resources from our first OT that would get me started and I was still researching more. One blog that I found incredibly helpful was The Crunchy and the Smooth. I must have read her blog a million times over, pulling ideas and insight and taking notes.

I came home from the Ped that first day, had a pep talk with Addison and vowed we weren't going back. I tube fed her before bed, just like always, but the next morning - I offered her a breakfast puree and Pediasure in a cup this time. She ate a little... like just a few bites and drank enough just to wet her mouth. I tried to feed her every hour on the hour, even if it was just a few bites. I counted every ounce and every calorie.

Early Intervention Update

Here in PA, they do reviews every three months and adjust services accordingly. The difference is that this review isn't one of those ones where they go through the whole assessment and say "Your child is this far behind" - this one is more like a meeting with the case manager, her "lead" therapist and me. We talk about her progress and what her new goals should be and then we plan.

So that happened on Weds. and we decided that we need PT again. Little Miss is having some balance issues, holds her left foot to the side when she walks, and seems to have some issues with her hips. Nothing majorly alarming, but something we wanted to have checked out, and see what we can do to help her. Some of this could be simply related to her vision issues, or just be a quirk she has right now and will out grow.

We also decided between Speech and Special Instruction. I asked for Speech but both OT and her case manager feel Special Instruction would be best suited for now. And we can pull in Speech later if needed. Addison does have some words, but (and maybe I am wrong) not as many as Blake. While it's hard to not compare them, it's just best to have these things looked at now and make progress on them. She is also "at risk" because of her Cleft Palate for speech delays so this is super important.

For now it looks like we are going to do PT once a month, Special Instruction twice a month and OT once a month. Re-eval in 3 months and decide from there. Should she still qualify based on her needs, within the next 3-6 months, they will start to transition her into the 3 year old program, which is more like a Head Start or Preschool type program to help prep her for school.

I am sure you've heard "most preemies are caught up by age two" and while that is true in some cases, we know that Addison still has some very mild delays. And ya know what, while I beyond a shadow of a doubt want her to "catch up", I am o.k. with this. Ok as in - I am glad we have the resources available to us to help continue to help her and nurture her learning so that she can continue to grow and progress. The important thing is that the gap between where she is and "should" be is getting smaller. It's just taking longer, and that's ok. She is so very smart, and picks up on things so I have no doubt that will continued hard work she will continue to blossom and develop.

One thing for sure is that we are going to have our hands full with her for sure ;)

Letter to My Babies... 2 year old (Addison) Edition

My Sweet Addison,

Over the last two years you have given me more joy then I could ever imagine (with just a few sides of heart ache and worry). And you know what, I wouldn't have it any other way. You have amazed all of us with your courage, strength, grace, and promise. You and Blake both have taught me what life is really about. You've taught me about miracles at their finest, and how delicate each breath is. Everyday I walk in to your room and see a bright smiling face and my heart melts at the sound of one word "MAMA!" (Which I can usually hear you calling from down the hall.)

The day you and Blake were born I knew my heart would forever walk outside of my body. You've learned the art of manipulation at a young age. Recently you have started to say "I love Mama" and "I love ya" but it's saved for special occasions... occasions when you've done something ornery and want to get out of trouble. You have also learned that a smile and one look will get you out of any trouble with Daddy and basically get you anything you want.

Two years ago we worried "Would you walk? Would you talk? Would you even survive?" You came into the world fighting at 1:10pm, and I remember a flash of blanket as they showed you to me and wheeled you away to the NICU. Later that night I got to see you again (which felt more like the first time), and they warned us that you may not make it. They asked if they should Baptize you then and we immediately said yes. I held hands with Daddy and your nurses and we prayed. I was only with you for a few brief moments when it was time for me to leave and get back to my room. See mommy was still on medicines and in pain from delivery. It was important that my medicines wore off before I could come see you again.

We left the NICU with a picture of you and your brother. That is what I looked at over and over the rest of the night until I was able to walk to get to you. The nurses warned me I should wait longer but it was important I see you. Before they would let us in, Dr. K needed to talk to us again. He warned us - said we had a very sick little girl on our hands. He also promised that he would do all that he could while we left the rest to God.

A lot of things have happened to you over the last two years. Most nothing short of a miracle. Addison you must know this... those people who were with you that first night, and those long 153 days later, made all the difference in your world. You won't understand this now, but I hope one day you will. See, for reasons we may never really know, my body just couldn't quiet do what it needed to, to keep you and Blake safe. (Secretly I think you and Blake both knew this and knew it was time to get out). Those doctors and nurses took care of you when I couldn't. They are all angels sent from Heaven, I am convinced. If it weren't for them, we wouldn't have you or Blake. You've visited these Miracle Workers several times since birth and each time they are amazed at just how special you are, and I cannot wait for the day when you can thank them personally for helping to give you life. They also taught me a great deal about how to care for two babies as precious as you and Blake.

As I sit here writing this, I reflect a little, and recall a time we wondered if you would ever walk and the many conversations we had with your therapists about it. But look at you know. You climb stairs (and anything else you can think of). And not only do you walk, you run, down the hallway to your toy room where I watch you talk to your baby doll and feed her just like Mommy feeds you. I listen to you and Blake talk to each other in that special twin language that only you two understand. You tell me things that usually make some sense. (And some of which is its own dose of sass already.) You point and shout "airplanes" when planes fly over head. You call "Sandi" for your favorite puppy dog, and who can forget "Minnie" your favorite stuffed lovey.

I also remember that night driving home from the hospital and your daddy turning up the radio and saying "This song, this is Addison's song. She's my firework." That song was Katy Perry's "Firework" - it took a long time for me to listen to that song without tears but it's true. It's totally you. I promise to play it for you often.

All of this though, is just the tip of the iceberg because Addison, you do just so much more then you can ever imagine. (Who can forget that just a few short months ago you were "feeding tube dependent" and now can out eat your brother.) Seriously, I just sat at the table with you tonight and watched you eat with a fork, off of a plate. And enjoyed every moment. And I am proud that you have learned that "all done" can only be used once you have ate enough (aka, you are eating more before you are "all done").

And speaking of your brother, there are a few things you should know about Blake. The first is that even on days where you bully him (yes, yes you do, and there is no denying that), he loves you and would go to the end of the world for you. Even in the NICU, sweet girl, he had to see what was going on with you all the time. The nurses commented often about how they would rotate him one way and he'd try so hard to turn back towards you. He has felt some of your pain. I watched him cry when things were happening to you. He will be your very best friend. He has rooted you on through countless feeding sessions and even cheered "Yay Addi".  He is proud of all that you are. And there is no use denying it. We know you love him too. Promise to always be there for him, no matter what. He'll do the same for you.

All my life I've waited, wanted and prayed for children like you, how lucky am I to have not one but TWO! See that's just it. We are one of the lucky ones.

May you always know just how much we love you!

Eyes, Nose, Fingers, Toes!

This is the TRUTH about what happens when you teach toddlers about body parts...

"Eyes" ::Poke:: (As in POKE in your EYE)
"Nose" ::Poke:: (As in toddler finger in your NOSE)
"Mouf" ::Poke:: (Same finger IN your MOUTH)
"Ears! EARS!" ::Tug:: (Tug on our earrings)

My all time favorite from Miss Addison herself - "Gasses" (swipes glasses off my face, quickly followed by...) "EYES!" ::Poke, Poke":: ... As if needing glasses to see isn't bad enough, I now have a toddler finger in my eye. And if you are thinking for one second that I could have stopped her... WRONG... girl is QUICK. And I fall for it every time! Call it her sneak attack.

"Hand" ::Smack:: (Me: "Not nice, we don't hit." Blake: "No, no Sissy. Not nice!")
"Toes" ::tug, tug:: (Me: "Blake! Stop tugging my toes." Blake: "hahahah TOES hahaha")


The very best part of this is the absolute PRIDE they have on their face when they have identified the correct body parts. So at the end of the day, I suppose it's all worth it, but really I hope they learn to be more gentle as I try hard to encourage them to be.

Silly Things...

That have happened this week alone.

One, trust me when I tell you that I am 100% positive that I am missing a lot because something silly happens like less then once an hour around here. These are just the few I remembered off the top of my head.

- At church on Sunday, our first time at this church to begin with. They have a nursery for little tikes, but welcome children in the congregation during service. We were hesitant about the nursery and decided to see how they did, if things got crazy we'd take them down. Which just before the sermon they did get a little restless - so we took them to the empty nursery. Not even the attendant was there. Blake had already ran off to play with some toys, so I figured I'd wait a minute or two. The minister saw us head down and sent someone after us to take the kids. Great.

In walks a teenage girl, sweet as pie. And this happens - "Pastor sent me down to look after them. You can come get them right before communion if you would like, or wait until the end of the service." Me: "Oh ok great. Um... that one (points to Addison) has a feeding tube, it's tucked under her onesie though and doesn't really impact anything, I just mean um. Like if he pulls on it or she does, which they usually never do. Like it basically doesn't exhist or matter, it's just there. Um, so yeah. So if you need us, we'll be upstairs." Meanwhile I am thinking my rambling has surely scared her off, she replies "Oooh, oook." And I go "K. Bye." and walk away. I handed my two kids to a complete stranger and walked away. Do not ask what came over me.

We get back to our pew and I start giggling quietly. Jake asks why I am laughing, "We literally just handed them off and walked away. Like to a stranger. Atleast we are in a church, I mean nothing bad can happen right?" Jake goes, "Um yeah, and you didn't even tell that poor girl what their names were." - _ -  He's right. No names, just "That one has as feeding tube." - _ - Allow me to formerly submit myself for Mother of the Year. And Jake...shakes head...I will not take all the blame. He was present. He could have spoke up too! I have absolutely no clue what came over me.

- Getting myself ready to go somewhere important (read in front of adult people whose opinion I value), I am applying brow liner in attempt to hide a few small bald spots do to my cheap over plucking job (don't judge me) when I look in the mirror and think, "That looks pinkish and feels...weird". Yeah because it is pink, or the manufacturer's idea of Neutral...LIP LINER! I just applied lip liner to my brows. Thankfully I started with the brows and hadn't done my whole face before I realized this. And for those of you asking how I made this mistake, remember I wear glasses, and did not have them on. Clearly Neutral looked... NEUTRAL, it is not my fault that all the liners come in similar tubes.

- Get on the computer after Jake and he is logged on to FB, so I did what any caring wife would do. I updated his status for him. He logged in to his account and reveled comments regarding "I am sexy and I know it." He texts me promptly and says simply "I am sexy and I know it." He has now repeated this throughout the evening here at home whenever he goes to do something or I ask him to do something. That's now his go to response "I am sexy and I know it."

- Feeding A & B lunch. (We have a rule that we wait for everyone to finish eating before we get up from the table.) We are almost to the end and I ask Addison "Would you like another bite?", to which Blake screams "NOoooooooo, no more bites Momma!" He had already finished his lunch and was clearly ready to get down, and felt strongly that Addison was done too.

- Dinner time. Most of the time I put food finger foods on the table for A & B versus on a plate, otherwise the food and plate ends up being tossed. Jake had set the table, I got them strapped into their chairs while Jake brought over drinks. Blake was in his chair first. When I look over after getting Addison settled, he has stolen Jake's plate and is trying to help himself to food, not to mention he put what I already gave him on the plate.

60 Days - 2 whole months

Without a single tube feeding! (And she is gaining weight! 23.1 lbs is the official weight.) And this last week she has suddenly started eating one waffle AND... AND an entire Greek yogurt for breakfast (it used to be one or the other.) Her appetite is growing for sure, and I am seeing her eating a lot more.

We couldn't be more proud. And to celebrate I made her a double layer chocolate cake! And I am also excited because for the first time ::knocks on wood:: neither kiddo had a reaction to the icing. The plain.white.vanilla.icing. Lol.

Today ( 1/15/13) is the official date for this "versary" but we celebrated on Sunday while Daddy was home for work, so he wouldn't miss out on the celebration.

Weight Check...

Day 48 without a tube feeding...36 days since her last Ped visit/weight check and.............drumroll................

SHE WEIGHS 23.1 LBS!!!!!!! SHE HAS GAINED A HALF A POUND SINCE 11/27!!!!!!!!

The Ped was beaming from ear to ear and told her "Sweet girl you are simply doing amazing, and I am so proud of how far you have come. You are really doing great!"

This is huge... HUGE. Our 1 lb 10oz baby girl who has been tube fed most of her life, hasn't had a tube feeding in 48 days and has gained a half a pound. Amazing miracle I tell ya!

I have been so stressed and so worried about it, and once again Addison has proven that she is defying the odds. I am simply amazed. Hard to believe that in exactly 42 days (not that I am counting) these amazing twins will be 2!!!!!!!!

And now for your viewing pleasure I leave you with a picture of the princess herself, driving in her Cozy Coupe this morning... Which by the way, she now informs me "Things do, back later" and drives off across the living room.

My Cozy Princess. Can you stand the cuteness?

Santa Comes to Town...

First and most important.......

ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!

30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.

To celebrate I thought "We should have cake, minus the icing because apparently my kids are allergic to cake icing." (Poor kids.) One of my preemie mom buddies suggested I let Addison and Blake help me bake a cake. And I really am thankful she suggested it because I would have thought about it later and wished that I had. But at any rate. Let me preface this with, I don't bake often, aka I do not have much on hand to bake from scratch or at a moments notice. That's ok with me though, because I am sure a box cake would be better then anything I could make, I tried that once so believe me...box cake is better. This meant a trip to the store. No biggie. I figured I could go after their nap, pick up the mix and such, come home and let them help me bake and hoped that by the time I was done Jake would be home from work to join in on the celebration.

I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).

At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.

Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.

I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.

Jake: "OMG... SANTA JUST CAME TO THE HOUSE."

Me: "What?"

Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."

And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.

Did I mention I was home ALL.FREAKING.DAY????????

So what did I do when I got home?

1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"

2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.

(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime."  And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)

Tube Weaning Update....

We had our appt with GI. According to their scale she lost 2 pounds (1. this is not uncommon when weaning from a feeding tube, but 2.) I am positive that GI's scale is so wrong. She was weighed the week before at the Ped office, and I weighed her on our home scale that same day for comparison. I also weighed her on our home scale the day of her GI appt too. She def didn't loose 2 pounds.), either way... GI's response to this was "What would you like us to do about her weight loss?" My response was, "Nothing. I won't go back to tube feeding her at this point."

I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.

One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.

I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)

She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.

But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask? Because I am a control freak. Because, there is a method to our madness here. Because I am her primary caregiver, I know the tricks of the trade to make things happen. It's a comfort thing between her and I and it's about trust. I know how much is too much on the spoon and when to take her cup away. Yes I could teach someone else I suppose, but it's hard to cram all that into one session and expect a person to remember when they aren't doing it on a daily basis. And we were actually discouraged from doing that by her OT, initially. Until she really became comfortable with eating and could manage things on her own a little bit better, and because what worked today wouldn't necessarily work tomorrow.

That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.

We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.

I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.

Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).

Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foods and I am way to lazy to make low calorie versions for Jake and myself nor do I have the patience.

A Special Note from Addison...

Hello to all our blog followers!

This is Addison and I wanted to share an extra special message with you all. See Mommy and I have been working extra hard on my eating. Mommy says we are doing something called "Tube Weening" where I learn to eat and not rely on my "tubie" anymore. I admit I am just a little sad about this because Tubie is my best friend and really means a lot to me. But I really wanted to be a big girl. My Pediatrician said that he really felt like it was a good time to let me try and give me a little room to grow, so Mommy promised we'd work really hard at it and told me that it was my choice. She would let me decide if I was ready to be a big girl and become an oral eater. Mommy said I shouldn't be scared and she would help me along, we would get through this together.

So we came home and she talked with Daddy and told him the news. And Daddy said he'd even help too. (I also think I remember something about a pony too). A month ago my journey to saying good-bye to Tubie began. I can best describe it as a marathon and sometimes a battle of wills. (I let Mommy think she wins them all.) But my Mommy and Daddy didn't give up. They kept trying with me. I am so excited to say as of today I have been eating and drinking enough food that I haven't needed Tubie..... FOR THE LAST 14 DAYS!!!! Yup I have went TWO WHOLE WEEKS without a tube feeding!

I saw my Pediatrician again today and he was so excited to hear the news. He checked my weight and said that I gained appropriately and was still following my curve. He gave me some new goals for me and Mommy to work on and said that as long as I stay on my growth curve and do not fall below the 10th percentile, I don't have to use Tubie. Mommy will take me back to visit again right before Christmas so I can tell him all about the progress we are making and let him know that I have achieved the goals he set forth for me. Mommy says we are officially on the path to saying "Bye Bye Tubie", just 165 days to go (maybe a little more, or less). That's right if I keep being a good girl and eat and drink by mouth (even when I am sick, which also means taking medicine by mouth) that in a little less then 6 months time Mommy and Daddy will likely get permission from my doctors to let me take Tubie out FOR GOOD!

He even told Mommy that she can call and cancel my appointment that she's been waiting a year for at the feeding clinic! The best part was Daddy got to be there today to hear the good news too. He was so proud of me that he took me out to dinner to celebrate! We meet with my GI doctor again next week for a follow up and I really hope she will be excited and proud of me too...

Can you believe it? First I got to share all the turkey and fixings on Thanksgiving with Mommy, Daddy and Blake and now I am on my way to big big things! Before you know it I'll be graduating college, walking down the aisle and starting a family of my own. Ok so Mommy says she just can't think about that part right now because she's not ready for me to be THAT grown up yet, and Daddy says no boy talk so shhh...

So long for now, I look forward to updating my loyal fans again later.

Love,
Princess Addison

On This Day...

ADDISON DRANK 10 OUNCES OF LIQUID BY MOUTH!!!!!!!

8 ounces of Pedisure, 2 ounces of water!!!

We have bought her every cup you can imagine but the end result was nothing more then a few sips totaling an ounce or less if we were lucky. So this is amazingly huge for her. Wanna know what the trick was? Letting her drink from a water bottle. So silly and simple. I would say I should have thought of this sooner but we did let her drink from them before but she just wasn't interested. I can truly say that I feel like she is finally ready to talk on this challenge. I couldn't be more proud.

Her menu today looked like this:

5.3 ounces of Peach Greek Yogurt
Snacked on Cheerios
One slice of deli turkey and a half slice of Swiss Cheese
About 5 Veggie Straws
One container of purees (Sweet Potato and Corn) thickened with Mixed Grain Cereal
3 more Veggie Straws
8 ounces of Pedisure
2 ounces of water

Keep in mind that in addition to hydration 8 ounces of Pedisure is equal to one whole meal. We've been giving her an 8 ounce bolus of Pedisure each night before bed via G-tube, but since she had already drank half of her Pedisure just before dinner and then ate fairly well, I didn't want to over feed her. We'll see how she does overnight and play it by ear from here.

This is so so very huge because all of this is forward progress towards removing her G-tube. We have a follow up with her Pedi on 11/27 and GI on Dec 7 (I think, I'll have to double check that date lol). We'll see what the Pedi says and how here weight is on the 27th and hopefully he can give us some tips on what we need to address with GI (if anything at all).

It has by far been the most challenging part of this journey so far and so many things I never thought I'd do as a parent has changed in the process. It quickly became the theory of "Whatever Works and Gets Addison Eating". We've had meals in front of the tv, because it helped her to zone out and distracted her so that she wasn't focusing on and becoming overwhelmed by eating. I've given up more control then I ever thought, because it works for her. I always thought there would have to be this progression from spoon feeding to self feeding but it quickly went from "Mommy do it" to "Addison do it". I thought she would eat this instead of that. When I say I have tried it all with her, I am not kidding. We have. Anything and everything. Hot foods, cold foods, spicy foods, salty foods, sweet foods. Ice tea, Milk, water, juice. Been there, done that, tried it all. Still a work in progess, but progress is measured in leaps and bounds around here now.

And that ladies and gentleman is what's been going on with Addison.

Moving On Up....

(North that is).... That's right. We relocated, AGAIN. But this time hopefully for awhile longer. We found a cute house that has room for us to grow (and accommodate all those wonderful TODDLER must haves) just between Gettysburg and Lancaster, its absolutely perfect. We can spend our mornings eating breakfast while watching deer frolic just past our back yard and come night a calm passes over the town. Country living at its  finest.

With this move has come a cost though... currently we have very limited internet access, hence the lack of blog posts. Promise you wont forget about us. Just as soon as we can find a good solution I promise we'll be back to the regular posting.

So since my last post Addison is officially off and walking aka running and she has finally started to stand up and walk from the middle of the floor. Blake is learning all sorts of new words and recently told me "Not the boss." Yes my almost two year old (HOLY COW) told me I am not the boss. I am going to have my hands full. He is also learning lots of animal sounds and can "read" picture books to me by naming animals and things. Addison is taking cues from him and using words and signs to communicate with us more and more. She recently has learned "drink" and will use it when we are working on eating and she needs a drink to help clear her mouth.

As far as eating goes...I don't want to spoil things or jinx them so lets just say we are off and running again and making some HUGE progress. We'll leave it at that for now. But after a very in depth conversation with her Ped we made some decisions and changed the game plan. We'll see how it goes and see what GI has to say in December.

At her last Ped appt he also mentioned concern about Addison's left eye drifting inward. I called her eye doctor and was told she couldn't be seen until Feb so I made a few more calls and found another doctor here in near our new place who can see her next week. Ironically enough the "new" eye doctor did her residency etc at both Mercy and UMMC where we are allllllll too familiar. It's like it was meant to be. Her office staff was amazing on the phone so we'll see how our first visit goes. Hopefully it won't be anything too serious and we can just keep an eye on it for now.

I think that's all I've got for now. Looking forward to getting some pictures uploaded at some point so you can all see those adorable faces again.

Addison's EI Annual Review...

First a short explanation of EI (Early Intervention) - EI is an array of services for children from birth to age two or three (depending on your local program). In our case this is a community program designed to maximize the developmental potential of children while providing support to the family.

Addison and Blake both automatically qualify based on their history of Chronic Lung Disease (preemie lungs), Low Birth Weight and IVH (Intraventricular Hemorrhage) and will stay enrolled in the program until age three based on these things (in the state of Maryland). They were enrolled in the program upon their discharge from the NICU and an evaluation was done to determine their developmental level and what services they would receive, they are then re-evaluated at marked intervals to see if how they are improving and if any changes should be made to the services they are receiving.

Addison currently gets PT (Physcial Therapy) - twice a month, OT (Occupational Therapy/Feeding) 1-2 times a week and Special Instruction (think pre-school skills)- once a month, and recently had her annual review. It did not go as well as I anticipated.

She is currently 18 months old (actual age) with an adjusted age of 15 months. She is measuring mostly measuring in the 11-12 month range developmentally. In one area she did have some scattered scores in the 18 month range (Cognitive Skills), language she has emerging skills in the 14-16 month range and her Social Emotional Skills measure on target for her adjusted age of 15 months.

For some reason (denial) as her mom I felt like she was doing better then this. I mean the truth is, she is doing GREAT. She has made HUGE progress and CONTINUES to move forward. The hard part is that she isn't really closing the gap between her "actual" and "adjusted" age, and is lagging even further behind. It was also painful to hear that she most likely will face a learning disability and likely will not be able to keep up with her peers as well. All that being said, with appropriate resources and hard work, she will eventually "get" it... she is just going to have to work at it more. (What else is new, right? It's been this way since day one.)

I guess the thing is though, I just don't want to hear that my child is going to struggle. Nor do I want to SEE my child struggle. She is so bound and determined to do things and she doesn't give up when she doesn't get it. She just keeps going and gives it another shot. But to think of the things she may come up against in the future and know the pain she is likely to feel when she struggles to keep up, hurts. Every parent only wants what is best and wants to see their child succeed. I know she will succeed and I know she will work hard at it.

Fact of the matter though is that Addison has already defied the odds. She is my baby that wasn't supposed to live. The baby that should be showing signs of Cerebral Palsy and isn't. She is the baby who we weren't sure would learn to eat, she's eating. The baby who who we thought would never learn to suck from a bottle or straw, and she now proudly carries her own straw sippy cup. The baby who struggled to make sounds and words, and she has now has an emerging vocabulary. The baby who we wondered if she would ever walk, she is > - < this close! She is doing it "on her own time" not our time, and ya know what... I am ok with that.

Does that mean that I don't/haven't/or won't grieve for the delays or the heartache of hearing what "could be"? Nope. In fact I needed time to grieve for this as silly as that may sound. It's hard to describe. It's almost like this loss of innocence maybe? Like knowing she will struggle with certain things. And I have to admit, sometimes I feel like I have failed her, like part of this is my fault. I know in my heart that I have done it all, and done more then some EVER would. And I have done it will pride, and will continue to do it with pride. I am proud of every single, teeny tiny/huge, accomplishment she makes. Every.single.day. that I get with her makes me even more proud of her fight.

Addison, please know that your father and I will give our all to give you every thing you need to succeed. We will work together as a team to help you reach your goals and Blake will be there to help too. We've all got your back. Continue to be fearless and know that you will get there. Where ever there may be. And when you are ready to do it on your own and spread your wings, we'll be there too and will let you fly. But know we will always be a phone call, email, text, or Skype message away to do whatever we can. I have no doubt that you will one day be a highly successful lady. No doubt in my mind. I pray I am half as awesome as you baby girl. <3

I leave you with this... It says it all. Her - the first time she finished a whole container of baby food.
And Proverbs could not be more true. 

Happy 18 Months Our Precious Little Ones...

Where has the time gone? Seems like yesterday I was looking on from outside your incubators, like yesterday that we got to carry your carseats out and drive you home. Like yesterday that we were up every three hours for months on end, from doctor's appointments to therapy and everything in between.

But ya know what I wouldn't change a thing.

How amazing you both are and how you both amaze me. They have their 18 month appointments tomorrow so I will be sure to update with offical stats later but I can tell you they have grown.

I know longer see tiny babies. I see toddlers, big smiles, giggles, tears (when they don't get their way) and milestone after milestone.

Where are they now?

Blake: Eats anything and everything. Favorites include yogurt and waffles. Runs Walks everywhere, mostly. Has lots of words and phrases including "Wat Dat" or "Who Dat". Drinks from a straw cup (or any cup). Understands "Come to Mommy/Daddy" and loves to tell you "No, no, no" finger pointing included. Says and signs "all done" & "more" recent words spoken include "Cup" or "Puc" and "Milk". He has started "giving kisses" which consist of open mouth full slobber kisses OR turning his cheek for me to kiss lol. Master stair climber, loves bath time as long as the water isnt running, and will quickly try to jump back in when bath time is over. He also likes to tell me "I poop" and has been known to bring me a clean diaper.


Addison: Still mostly feeding tube fed but making great strides. HAS FIGURED OUT HOW TO DRINK FROM A STRAW (our baby who never knew how to suck.... SHE SUCKED MILK FROM A STRAW). Is eating an ounce to two ounces of food depending on the day. Crusing and finger walking. Has 9 words/phrases..."Up" "Ball" "Baby" "Mama" "Dada" "All done" "Good girl" "Hey" "Hi", all of which have been within the last month. She was evaluated by Speech today through Infants & Toddlers and the request of the Cleft Palate Team, becase during their appt two months ago, she didn't really have words and was doing minimal imitating. Do you want to know what the Speech Therapist told me today? "I am amazed at her beautiful language skills, just three months post Cleft Repair. She has adequet words for her age, and immitates well. I am beyond please and think she is well within NORMAL range for her age of 18 months." Get out of here! Talk about a heart swelling with pride. I was also told once again that had it not been for the medical documentation it would be hard to believe she had a bilateral 3/4 brain bleed. She climbs stairs well but does better when little brother isn't racing her to the top.

Dear Babies,

May you always know the joy you have brought to us and continue to give us. I love watching the world through your eyes. The discovery as you learn something new. The pride you show when you master a new task. The imagination when you play a game a peek-a-boo together or turn toys upside down in attempt of finding new ways to play. The love that you give unconditionally. I am forever amazed by your strengths and how you both over come any obstacle placed in your way. My heart swells with pride every time I lay eyes on you both. Daddy and I are very blessed to have you both. I cannot imagine things any other way.

With all my heart and love,
Mommy

Feeding Addison...

Not all  that long ago I posted this to my personal FB and wanted to share it here as well.

 

"Let's talk about Addison for a second... Many people have asked about her feeding tube and wondered why they haven't taken it out yet. Her Cleft Palate surgery was not a cure all, we knew that going into it. That was just a small piece of the puzzle. She is still 100% tube fed, I don't know how long she will be that way. It could be forever, and thats ok. A lot of you know her and know that her feeding tube does not limit her in anyway. She just eats differently, plain and simple.

She has come a very very long way since we started therapy and hopefully with continue to progress. You see her pictures, eating cookies or other things because it's a huge deal for us. As her parents all we ask her to do is try. And that she does. That Oreo? Yeah that maybe the only thing she has put in her mouth all say. The puffs she stole from her brother, yup that's all she wants to eat today. There are only 25 calories in 45 puffs, and other then that they aren't very nutritionally fulfilling.

We can't just give her whatever, because she may or may not be able to manage it. We let her try a lot but only when we can be sure she is ok with it. Many days she fights us and now she is in the phase of wanting to do it herself. We try to respect that as much as we can too. It's all a balancing act. We work at it every single day. Some days I feel like we get nowhere and it's frustrating, other days she does great and it gives me hope.

I don't doubt her ability, but I am realistic. I don't know what her future may hold but I do know that no matter what she will be loved."

 

Since I posted that we did make some HUGE progress. Addison actually "consitantly" ate whole containers of baby purees for a few DAYS. Enough that I was even able to cut an ounce out of her tube feedings. And then her molars started coming in. AND.... the volume by mouth decreased.

 

BUT THE KEY IS THAT SHE HASN'T GIVEN UP. Yes somedays are still a fight, ok really right now most days are. But I am starting to see her progress a little more again. As of right now today, she is eating an ounce of food atleast once a day (we are do attempt to feed her 3 times a day, but she won't always eat). She will drink about an ounce of Pedisure 3 times a day, and will take sips throughout the day...

 

So what's our current "protocol"...OT and I were discussing this in depth yesterday. We are still pushing puree food and have recently started added some dissolvable solids to the purees, by crushing them up and making it more "chewy" for her. (We have noticed lately that she wants to chew alot, thanks to those teeth.) So adding things like graham cracker crumbs or what tried today crumbled Cherrios. And offering her things that are crunchy and can be placed on her molar area and she can chew.

 

We are still using a vibrating brush for oral stim, but seeing that we need to use it less and less, and her chew tube. Her oral motor is increasing beautifully which is promising. We are also going to try to alternate flavors with her and see if that helps. Our OT comments all the time that Addison is one in a million and what works today isn't always what works tomorrow. So it's trial and error, but we are progressing.

 

I think I have mentioned before that Addison likes very bold flavors so we are trying to play on that too. Plus she is becoming more and more interesting in feeding herself. She loves to take bites of chocolate chip waffles, but has yet to eat even a fourth of one. And recently she has been sucking on things like carrots and blueberries which is huge because prior to this she has not been able to suck at all because of her Cleft Palate. So we are working with that too and trying to get her to drink from a straw cup.

 

It is becoming increasingly difficult to keep her sitting still and entertained while connected to her feeding tube/pump, so we are working on some new games and skills. I bought both babies a Magna Doodle to draw with and we've been playing with crayons. Plus working on how to put things in and out of containers. We are reading books now too. Her (well Blake's too) favorite book is "Have A Ball" and she loves pointing at the ball and "reading" it to me... Her version goes something like this "Ball, ball, ball" ... turn page... "Ball, ball, ball, ball"...the end.

 

Her verbal skills are really picking up, which is exciting for us all. And I am a little nervous because she is getting closer and closer to WALKING....which means I will have TWO WALKERS!!!