I've been thinking a lot lately about how life threw us a curve ball. One that we didn't have any choice but to accept and I have definitely come to terms with it, but have been reflecting on life a lot lately. This blog isn't to bring pity to our family, it's more sharing awareness and how life has changed, sometimes for the better, and sometimes for the worse.
My reflection started when I had someone contact me recently to connect with another mother who was having a difficult time accepting her new role as a special needs parent. It is extremely hard to take on this role. You're thrown into it without having the chance to look back. No time to think, only time to act. I shared with her what I thought to be very valuable information and assured her that life would get better. Not easier, but better. I shared the story of traveling to Holland, which helped me in many ways accept the life I've been given. I've had time to reflect on my trip to Holland recently....
You see, I didn't CHOOSE to become a stay-at-home mother. I was FORCED to become one. I enjoyed my job, the interaction with adults, and the daily routine of going to work. Of course, it did seem appealing...getting up and drinking my coffee, watching GMA while my kids hapily played, getting laundry done, playing blisfully in the backyard, making wholesome meals, until my little Emily entered the world. Our first few months were spent weekly back and forth at the hospital getting heart checks, thyroid checks, and advice from feeding specialists for my little low-toned, floppy air-way, slow eater. Now, life is filled with constant trips back and forth to therapy. We see four different therapists along with an Early Interventionist and a handful of specialty doctors including feeding specialists, endochronologists, cardiologists, and doctors specalizing in children diagnised with Down syndrome. It's hectic.
When I thought of the life of a stay-at-home mom, I assumed I'd be able to attend all school functions for my children, happily drop them off at carpool and be about my day cleaning and primping. I have yet to attend a single PTA meeting for either child, or participate in a school function this year. You see, my children attend two different preschools. Not by choice, but again, by force. Lilly's school would not accept Emily into their program, they were not "equipped" with the staff or means to provide for her. She is absolutely NO different than any other typical child right now. She stands, creeps, crawls at the speed of light, eats like a horse, rambles and defies...shes "normal". I began my role of child advocate right then and there, finding a school that would accept Emily and everything that came along with her. I could not be happier with her placement and plan on switching Lilly next year. Lilly's school needs education about children with special needs. I understand them not wanting to take children with special needs, but before they turn one down, perhaps they do a little research into that child's particular diagnosis before saying "no!".
A life with a special needs child is spent on the telephone 50% of the time. Rescheduling therapies, calling for an IFSP update, aruging with insurance, Medicaid, HIPP and various other providers. After teaching, I was thrown from teacher lingo to special needs lingo. PT, OT, SLP, SMOs, HIPP, IFSP, ECHO, Free T4, TSH. The typical mother wouldn't know what these mean, yet I've learned them all in my last two years (any many more!). My child has had an unhealthy amount of x-rays, blood transfusions, ultrasounds, and ECHOs, yet there is one damn thing I can do about it. It's part of her life, my life, our life.
While at the beach, I had a lady, who happens to be a home-health nurse ask me Emily's age. I happily stated that she was 22 months old. The next comment out of her mouth regarded walking, and why she wasn't. I explained that she had Down syndrome and most milestones came later than that of a typical child. My "Mongoloid" as she stated, looked beautiful. She didn't understand why we had prenatal testing, and my only reply was that "knowledge is power". It has nothing to do with my religious beliefs, nothing to do with terminating a pregnancy, but everything to do with how our delivery would carry out and the appropriate steps that would be taken during Emily's first few hours of life. My explination ended with a "have a good day" and my reflection into her narrow-mindedness. Mongoloid is a term used for those with DS back in the early 1900s. It is no longer an appropriate word to use and is for lack of better words, extinct, from all medical research. I also didn't have to have an amnio (which she gawked at) because there are many, many more new non-invasive blood tests used to determine genetic anomilies. This promopted more of my reflection. Knowledge is power...
Emily is joy, blessing, mystery, and the light of our lives. She has opened our eyes, made us think twice about everything we do and given us a new purpose to life. She has paved way for a new path that we must take, one that is mighty different than expected, but one that has made us "up for the challenge". I challenge you to be kind to those families of special needs children. Take a minute to step into their worlds. If they turn down a playdate or date night, it's mostly due to sheer exhaustion. Maybe their child has had 4 viles of blood drawn that day, gone through an hour if rigorous therapy, or just plain had a tired day...be kind, accepting, and willing to work with them, because life is a different path for us all.
Wednesday, October 8, 2014
Wednesday, June 25, 2014
BELIEVE
Well, hot damn, do you BELIEVE your eyes!?? I'm BLOGGING! I've had so many people ask me why I haven't blogged in a while. There's really no excuse...so here I sit, with Billy by my side, at 9:54pm on Wednesday night, Michael Jackson blaring in our bedroom, writing to you all.
The last year has really been surreal. I stopped blogging after my mom called me out on several occasions after I'd been negative in one too many ways in my blog. I'd been going through a difficult time, comparing Emily to others, and in general, just hating everything that came along with T21 (Trisomy 21, or the 3rd copy of the 21st chromosome). Are there times that having a baby with Down syndrome sucks, ABSOLUTELY. But, with that being said, I would not ever, ever, ever change my sweet Emmie Kate for the entire wide world. She literally runs my world.
In the last year, she has decided to actually develop a personality. It took a little extra time for that to come about, but let me tell you, she is all sass, just like that little sister of hers, Lilly. Emily has learned to crawl like a mad man. She can get wherever she needs, in a hurry. We bit the bullet, like most typical parents, and screwed the baby gates into the walls to keep her trapped upstairs or in the kitchen...much to her dismay. We are currently working on getting her to stand and it's like most things, a constant battle. Physical therapy is no walk in the park. On Thursdays, I bite the bullet and endure an hour of crying. Working on standing, or any other type of "work" our therapist deems important immediately results in crying. Next time ANYONE decides to get me a gift, make it be Bailey's so that I can add it to my 8am coffee for PT.
We also go to Occupational therapy every Monday which is much more fun. It requires Emily to stack blocks, pull doggie toys, push buttons...all which seem normal to the typical parent, but given the fact that Emmie was basically born without muscles, these items are like obstacles. This therapy is at 10am, so mimosas would be a little more appropriate.
I have asked our Early Interventionist (yes, there are like 1,000 names for the 1,000 people that help run Emily's life) for speech therapy. We will begin that in the fall. So, basically, once the school year begins, never, ever, ever call me and expect me to be able to do anything. PT and OT once a week and speech 2x/week...oh, and we are on the waiting list for aquatic therapy (supposedly, it's good for those lazy joints and muscles). I'm busy, our babysitter is making a small fortune, and my head is about to pop off!
It's crazy living this life. I still sometimes feel like giving God the bird, but hey, He gave me what he felt like I could handle. My husband busts his ass working two jobs so that I can stay home, although I have absolutely no idea how I would work right now. I occasionally walk into our shed and look at the melting crayons and dried up glue and wonder if I'll ever head back into teaching. I long for the adult interaction and the fulfillment of teaching youngsters new things. When I left the world of teaching, it was bittersweet. I absolutely LOVED the kids I taught when Emily was diagnosed and their parents were so wonderful to me, coping with the days off I took and all the appointments that came along with growing a little special needs baby. I miss it daily.
The other thing I miss the most ever, ever, ever is Charleston. It's a pain deep in my heart that I don't think will ever go away. Our friends there were family. Period. They will always remain family and it absolutely pains me that I've missed so much in my "family's" life lately. If the time ever came about, I am 99.9 % that Billy and I would move back. Right now is not the time, but one day, it just might be. Both of our children were born there, and we have deep memories that will never fade. Our family in Georgia is literally the best. I don't know how we would ever do it without every single person. I'm always calling someone to complain or ask for advice and they're right there. We're all in this together and EK has brought us all closer together than I could have ever imagined. Family means to world to us, and I'm pretty sure that without them all, I would have suffered a mental breakdown by now!
Having a child with Down syndome will never be easy. I look at our basement every time I go down there and think "this will be Emily's house"...will it? Like really? Will she ever live alone? Will we travel to Italy? Greece? Bora Bora? Our "Bucket List" places? All my friends tend to think in the real world and reassure me that she will live independently, but really, have you all done the research? No. Most likely, she won't live alone. Bring on the $30,000 basement reno. My baby will forever live with me...but you know, if she's as sweet as she is now, I'll take it. I could rock her for hours and hours and hours. Having a T21 baby isn't as scary as it seems, and I'm beginning to realize that, slowly, but surely.
The last year has really been surreal. I stopped blogging after my mom called me out on several occasions after I'd been negative in one too many ways in my blog. I'd been going through a difficult time, comparing Emily to others, and in general, just hating everything that came along with T21 (Trisomy 21, or the 3rd copy of the 21st chromosome). Are there times that having a baby with Down syndrome sucks, ABSOLUTELY. But, with that being said, I would not ever, ever, ever change my sweet Emmie Kate for the entire wide world. She literally runs my world.
In the last year, she has decided to actually develop a personality. It took a little extra time for that to come about, but let me tell you, she is all sass, just like that little sister of hers, Lilly. Emily has learned to crawl like a mad man. She can get wherever she needs, in a hurry. We bit the bullet, like most typical parents, and screwed the baby gates into the walls to keep her trapped upstairs or in the kitchen...much to her dismay. We are currently working on getting her to stand and it's like most things, a constant battle. Physical therapy is no walk in the park. On Thursdays, I bite the bullet and endure an hour of crying. Working on standing, or any other type of "work" our therapist deems important immediately results in crying. Next time ANYONE decides to get me a gift, make it be Bailey's so that I can add it to my 8am coffee for PT.
We also go to Occupational therapy every Monday which is much more fun. It requires Emily to stack blocks, pull doggie toys, push buttons...all which seem normal to the typical parent, but given the fact that Emmie was basically born without muscles, these items are like obstacles. This therapy is at 10am, so mimosas would be a little more appropriate.
I have asked our Early Interventionist (yes, there are like 1,000 names for the 1,000 people that help run Emily's life) for speech therapy. We will begin that in the fall. So, basically, once the school year begins, never, ever, ever call me and expect me to be able to do anything. PT and OT once a week and speech 2x/week...oh, and we are on the waiting list for aquatic therapy (supposedly, it's good for those lazy joints and muscles). I'm busy, our babysitter is making a small fortune, and my head is about to pop off!
It's crazy living this life. I still sometimes feel like giving God the bird, but hey, He gave me what he felt like I could handle. My husband busts his ass working two jobs so that I can stay home, although I have absolutely no idea how I would work right now. I occasionally walk into our shed and look at the melting crayons and dried up glue and wonder if I'll ever head back into teaching. I long for the adult interaction and the fulfillment of teaching youngsters new things. When I left the world of teaching, it was bittersweet. I absolutely LOVED the kids I taught when Emily was diagnosed and their parents were so wonderful to me, coping with the days off I took and all the appointments that came along with growing a little special needs baby. I miss it daily.
The other thing I miss the most ever, ever, ever is Charleston. It's a pain deep in my heart that I don't think will ever go away. Our friends there were family. Period. They will always remain family and it absolutely pains me that I've missed so much in my "family's" life lately. If the time ever came about, I am 99.9 % that Billy and I would move back. Right now is not the time, but one day, it just might be. Both of our children were born there, and we have deep memories that will never fade. Our family in Georgia is literally the best. I don't know how we would ever do it without every single person. I'm always calling someone to complain or ask for advice and they're right there. We're all in this together and EK has brought us all closer together than I could have ever imagined. Family means to world to us, and I'm pretty sure that without them all, I would have suffered a mental breakdown by now!
Having a child with Down syndome will never be easy. I look at our basement every time I go down there and think "this will be Emily's house"...will it? Like really? Will she ever live alone? Will we travel to Italy? Greece? Bora Bora? Our "Bucket List" places? All my friends tend to think in the real world and reassure me that she will live independently, but really, have you all done the research? No. Most likely, she won't live alone. Bring on the $30,000 basement reno. My baby will forever live with me...but you know, if she's as sweet as she is now, I'll take it. I could rock her for hours and hours and hours. Having a T21 baby isn't as scary as it seems, and I'm beginning to realize that, slowly, but surely.
Sunday, September 8, 2013
Back in the game...
Our family is beyond ready for the fall weather and change of pace to come. This summer, as we all know, has been filled with rain, humidity, and HEAT! I took Lilly to the park today and it was a miserable experience. It's was just so hot. She was ready to leave after 30 minutes. It's sad when you kid tells your that she just wants to stay inside because it's too hot. We have resorted to front porch rocking with popsicles many times this summer to cool down. I cannot wait for the day when we can play outside alllllll day without continuous sweat and the worry of baking under UV rays with an index of 10+. With cool weather brings sweatpants and lounging around, football and tailgaiting, some of our family favorite things to do! We cannot wait to test out the fireplace at our new house, too. In the past, we have always spent countless evenings at Billy's parents with his sister and husband, enjoying beverages and a warm fire and now we can finally experience it at our own house. Our home in Charleston didn't have a fireplace and we longed for one for five years!
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| Summertime wagon ride |
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| Yellow River Game Ranch fun! |
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| Silly animals! |
Since this is an Emily blog, I must update you on her! She's continuing to make excellent progress. She's rolling over constantly. Her days of playing under her jungle gym are long gone. She doesn't stay under it for more than 30 seconds. We are still working really hard on getting her to sit up, but she's still not very sturdy. We primarily work on that during therapy. Lately, therapy has been nothing but misery and it's really stressful. Emily is a week shy of 9 months and doesn't even attempt one iota to sit up. It's got to get boring laying down all the time! We play in the Bumbo too, but that doesn't promote good posture and she really needs that strength so it's not an item that's used too often. So, what it all boils down to is me sitting, holding her up, and her getting pissed. It's also hard because we spend a lot of time in our playroom and Lilly desperately wants to me to play with her babies but I've always got one hand on Emily. If she could only sit up.... She spends plenty of time on her back and thankfully, she doesn't really have a flat head. Whew!
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| Hiding from the inevitable....THERAPY! |
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| It never gets old sneaking in on a sleeping baby just to get one last glimpse. |
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| Rolling so much she gets stuck! Guess it's time for a new toy... |
I am getting anxious about wanting to start speech and occupational therapy. Our physical therapist does it all for now, but Emily is approaching 9 months and I'd like to start her on some finger foods and the beginnings of drinking from a sippy cup. We need OT for the food and ST for the drinking. Plus, I'd like speech to come and watch her eat her solids to make sure that she's not thrusting her tongue too terribly bad. That is a common trait of those with DS. If you're ever holding her and she's hanging her tongue out of her mouth, kinda like a dog, gently push it back in. We also don't have any teeth yet and I keep checking. One mom on a private FB group said her son is 14 months and still without teeth. Tooth eruption is a common delay in those with Down syndrome. Maybe we will get one by her first birthday, but if not, we will continue to love that little gummy smile she give us daily. Speech will also help us learn how to properly sign with Emily (although we already do) and help her communicate with us. She doesn't coo like the typical baby. Her "speech" is more like a long, drawn out moan. It can get confusing deciphering this from fussing. She doesn't babble much. When she does, it is soooooo cute though-even cuter than it was with Lilly because we heard it from her daily. It's a once a week occurrence with Em.
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| EVERYTHING goes into the mouth.... |
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| Mouth again... |
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| Annnnnd more mouth. WHERE are her teeth! Hiding I do suppose... |
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| Picking out some paint at Lowe's |
Raising Emily isn't always roses and sunshine though. I re-read the Trip to Holland story recently and I'm reminded that even though we are not going to the same place as most parents, our place is just awesome and full of surprises and joy. Emily definitely has a little mind of her own lately. She doesn't like being left alone and does have the "stranger danger" affect going on. Her hardest time of day is from 5:00pm-bedtime, which seems to be getting earlier and earlier lately. She's just really, really, really fussy around 6:00pm so we go ahead and do bottle and bed. She rolls around in the bed for at least 30 minutes, but I guess she likes being in her own space and in her jammies. She doesn't cry, she just lounges. Her other vice is that she is definitely a mommy's girl. I am her primary caregiver and she knows exactly who I am and longs for me, and only me. This can get taxing at times and leaves me exhausted by the end of the evening. Billy is gone for work from 7am-7pm which is before she wakes and after she goes down. It's hard and tiring. Many moms have a desire to be a stay-at-home mom, but it's not always everything it's cracked up to be. I am FOREVER grateful that I have the opportunity to stay home, but I seek adult interaction-constantly. If I'm ever around you and I talk your ear off, just smile and nod...I need adults! I wouldn't trade this job for the world, don't get me wrong despite the bitching that sometimes goes on.
Our little firecraker, Miss Lilly started school and is having a really good time. On Friday, her teacher commented that she didn't finish her snack because "she was into everyone else's business." My mom was there with me and we both just laughed because she gets that honestly. My brother, mother, and I are constantly stirring that pot. Poor thing! This week she begins going the normal "full day" from 9-12. Last week was just two days and a warm up for only two hours. I'm really looking forward to the time alone with Emily and time alone with myself! Time to organize, clean, shop, or lounge-peacefully! Lilly thrives on structure, school, learning, reading, crafting, and interacting with others. I am confident that this school year will make her a happy (ier) girl once again since pulling her out in March.
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| Patiently waiting to meet her teachers |
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| First homework assignment completed...check! |
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| First day of preschool! |
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| Lounging |
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| Day 2 of preschool :) |
Before I wrap up for the night...don't forget-if you want to participate in the Buddy Walk (Sunday, Oct 13th at 1:00pm at Centennial Park), make sure you REGISTER to walk with our team. Also, the deadline for ordering shirts is WEDNESDAY. If you are even considering wanting one, please send me your size. We specifically didn't put the date of the walk on the shirts so that we can use them year after year-which also means that if you can't walk this year, you may be able to next year and will still sport our team wear :)
Time for some R&R. Busting up the walking trails with my mom in the morning to work off some of the ice cream that keeps making it's way into my mouth on a nightly basis.
Sunday, August 18, 2013
A handful of frustration and irritation, but a healthy dose of milestones!
Sometimes I could kick myself for not writing down the things that I actually want to blog about. I think of all the wonderful things while I'm alone, shopping, cleaning house...things that irritate the hell out of me or things that bring tears to my eyes. One day I'll learn to keep a running list of "things". This week has been a week of irritation. There is no justification as to why, it just is what it is. My list is chronicled below and some of you moms may say, "Hey, that bitch is talking about me!". Oh well.
Irritation of the week # 1: I ran across information overload this week which pissed me off from the get-go. I became a part of some Facebook groups just for moms of kids with DS. They are WONDERFUL to be apart, as long as you don't read every single link posted. You see, these links lead the already worried mother to read more pages filled with more worrisome information that causes you to lose sleep overnight. My most recent information overload came from researching nutrition and supplements for those with DS. Holy cow. There are some mega vitamins out there that supposedly help with all kids of issues that those with DS have, and of course, there are positive and negative comments about them all. I have never been one to supplement with vitamins, besides the Women's Day stuff, but all the other crap...I just don't believe in. I can ASSURE you that my grandmother did not take fish oils when she was 5 to help with whatever it helps with. And to this date, she is slightly more energetic than I am. I also don't sprinkle Emily's food with flax seed or any other seedy material. She shits more than me and all bowels are a go. However, with that rant, it does leave me to wonder if these vitamins can "help" Emily become "smarter", because, come on, we want her to be high functioning, right! Doesn't every parent with a special needs kid want that! Or, just a regular ol' kid. Hell, I think Lilly is gifted and talented, but of course, that's the motherly bias there. Lilly eats fruit snacks (aka, little chewy figures made purely of sugar), she could out-drink anyone in an orange juice drinking contest, she loves canned Spaghettios, and eats organic only when it's on sale or I shop at the Mehlinger grocery store AND gasp! she watches the Hannah Potty Movie sometimes three times in a row just so I can empty the dishwasher. There. Bad mom.
Ok, as I continue researching I am left reading endless articles about DS people needing to eat gluten free diets and having milk allergies. No ice cream? No cheese? These are staples in our house! I am left with the extreme guilty feeling of needing to change Lilly's diet because by the time Emily can eat unassisted, she will have to eat a more nutritious diet. Not only is this due to potential "allergies", but she has hypothyroidism which will naturally lead to her having a weight struggle her entire life. She's not going to be 5'6, so all the extra weight will spread evenly through those cute, chubby arms, legs, and already robust midsection! That midsection is already causing me issues. She can wear 3-6 month pants in length, but boy oh boy, that belly is losing circulation. What's a girl to do?
Irritation of the weeks # 2: An over-the-top-you-have-too-much-time-on-your-hands mom posted a picture on one of my DS pages of her child's "play area" at her house. And. there.were.a.lot.of.toys. She said she ran across several articles stating that babies with DS need a large variety of new toys to help with stimulation because they are "tools for development", or can be therapeutic. So basically, what this does to a mom (me) that's already irritated makes me look at all my toys and want to run over them with my car. Don't use the Bumbo. It doesn't promote good core strength. Don't let them lay too long on the play mat. Flat heads. Don't carry her on the hip. We definitely don't want her to become anymore bow-legged. Negative Nancy over here, I know, but hey, sometimes it's just that way. I did come across a great little file that contained wonderful information about specific toys for those with DS.
http://www.btha.co.uk/wp-content/uploads/2012/10/DOWNSSYNDROME.pdf
It's good stuff. Now, with this all said, I spent entirely too long at Buy Buy Baby recently looking at every single baby toy ever made and wanted to instantly buy them all. For that gifted and talented stuff, right? Sometimes, having to buy special toys and constantly have to worry about stimulating your child in the best way possible takes all the fun out of actually playing. It makes it a chore, which it should not be. Lilly can play baby all day long. I know we'll get to that point one day, but I can only help but think in the now. We never said raising Emily would be easy, and this is just one small hurdle we must jump over.
Positive Patty #1: When I think I'm having even a REMOTELY bad day, I think about everything we/she/the entire family has already been through and all that negative thinking is just a walk in the park. It's actually really hard to remember the days of the feeding pump, worrying about picking her up due to her incision, and surgery...I can hardly remember. It's a good thing I have a million pictures to look back on. The feeding pump was by far the very hardest part of raising Emily so far. Yes, the surgery was difficult, but she was comfortable and relaxed with all those happy drugs. The aftermath was what hit her hard. The Enfaport was the most disgusting formula in the entire world, and Emmie certainly let us know. Almost every time she ate, she projectile threw up the entire bottle. Some days, I knew it would just be easier to lay her down, hook up the pump, and let the milk drip into her belly. The pump was only for the night though and I didn't want her to forget how to suck from a bottle. THOSE days were hard. So on days like this, when no one, for no particular reason is pissing me off, I remind myself of those days and take a step back.
Milestone # 1: Sweet, sweet, sweet rolling over!!! Emily is a rolling machine. Front to back, back to front and over, and over, and over again. She turned 8 months old this past week and I never thought this day would come. Slowly but surely, progress is being made. Her core is strengthening and she's thinking about sitting up alone. My goal is by next week when PT comes, she can sit alone for at least 10-15 seconds. Goal.
I'm off to eat a piece of fried chicken. Because I can, and because I'm pissy. Maybe I'll even wash it down with a cold Miller Lite. It's 5:00 somewhere, right?
Irritation of the week # 1: I ran across information overload this week which pissed me off from the get-go. I became a part of some Facebook groups just for moms of kids with DS. They are WONDERFUL to be apart, as long as you don't read every single link posted. You see, these links lead the already worried mother to read more pages filled with more worrisome information that causes you to lose sleep overnight. My most recent information overload came from researching nutrition and supplements for those with DS. Holy cow. There are some mega vitamins out there that supposedly help with all kids of issues that those with DS have, and of course, there are positive and negative comments about them all. I have never been one to supplement with vitamins, besides the Women's Day stuff, but all the other crap...I just don't believe in. I can ASSURE you that my grandmother did not take fish oils when she was 5 to help with whatever it helps with. And to this date, she is slightly more energetic than I am. I also don't sprinkle Emily's food with flax seed or any other seedy material. She shits more than me and all bowels are a go. However, with that rant, it does leave me to wonder if these vitamins can "help" Emily become "smarter", because, come on, we want her to be high functioning, right! Doesn't every parent with a special needs kid want that! Or, just a regular ol' kid. Hell, I think Lilly is gifted and talented, but of course, that's the motherly bias there. Lilly eats fruit snacks (aka, little chewy figures made purely of sugar), she could out-drink anyone in an orange juice drinking contest, she loves canned Spaghettios, and eats organic only when it's on sale or I shop at the Mehlinger grocery store AND gasp! she watches the Hannah Potty Movie sometimes three times in a row just so I can empty the dishwasher. There. Bad mom.
Ok, as I continue researching I am left reading endless articles about DS people needing to eat gluten free diets and having milk allergies. No ice cream? No cheese? These are staples in our house! I am left with the extreme guilty feeling of needing to change Lilly's diet because by the time Emily can eat unassisted, she will have to eat a more nutritious diet. Not only is this due to potential "allergies", but she has hypothyroidism which will naturally lead to her having a weight struggle her entire life. She's not going to be 5'6, so all the extra weight will spread evenly through those cute, chubby arms, legs, and already robust midsection! That midsection is already causing me issues. She can wear 3-6 month pants in length, but boy oh boy, that belly is losing circulation. What's a girl to do?
Irritation of the weeks # 2: An over-the-top-you-have-too-much-time-on-your-hands mom posted a picture on one of my DS pages of her child's "play area" at her house. And. there.were.a.lot.of.toys. She said she ran across several articles stating that babies with DS need a large variety of new toys to help with stimulation because they are "tools for development", or can be therapeutic. So basically, what this does to a mom (me) that's already irritated makes me look at all my toys and want to run over them with my car. Don't use the Bumbo. It doesn't promote good core strength. Don't let them lay too long on the play mat. Flat heads. Don't carry her on the hip. We definitely don't want her to become anymore bow-legged. Negative Nancy over here, I know, but hey, sometimes it's just that way. I did come across a great little file that contained wonderful information about specific toys for those with DS.
http://www.btha.co.uk/wp-content/uploads/2012/10/DOWNSSYNDROME.pdf
It's good stuff. Now, with this all said, I spent entirely too long at Buy Buy Baby recently looking at every single baby toy ever made and wanted to instantly buy them all. For that gifted and talented stuff, right? Sometimes, having to buy special toys and constantly have to worry about stimulating your child in the best way possible takes all the fun out of actually playing. It makes it a chore, which it should not be. Lilly can play baby all day long. I know we'll get to that point one day, but I can only help but think in the now. We never said raising Emily would be easy, and this is just one small hurdle we must jump over.
Positive Patty #1: When I think I'm having even a REMOTELY bad day, I think about everything we/she/the entire family has already been through and all that negative thinking is just a walk in the park. It's actually really hard to remember the days of the feeding pump, worrying about picking her up due to her incision, and surgery...I can hardly remember. It's a good thing I have a million pictures to look back on. The feeding pump was by far the very hardest part of raising Emily so far. Yes, the surgery was difficult, but she was comfortable and relaxed with all those happy drugs. The aftermath was what hit her hard. The Enfaport was the most disgusting formula in the entire world, and Emmie certainly let us know. Almost every time she ate, she projectile threw up the entire bottle. Some days, I knew it would just be easier to lay her down, hook up the pump, and let the milk drip into her belly. The pump was only for the night though and I didn't want her to forget how to suck from a bottle. THOSE days were hard. So on days like this, when no one, for no particular reason is pissing me off, I remind myself of those days and take a step back.
Milestone # 1: Sweet, sweet, sweet rolling over!!! Emily is a rolling machine. Front to back, back to front and over, and over, and over again. She turned 8 months old this past week and I never thought this day would come. Slowly but surely, progress is being made. Her core is strengthening and she's thinking about sitting up alone. My goal is by next week when PT comes, she can sit alone for at least 10-15 seconds. Goal.
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| From this....newborn.... |
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| To this...post surgery... |
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| And right back at it....she's a damn miracle. |
Saturday, August 10, 2013
It's that time again!
Ok...well first let me start by saying I drafted this entry like three weeks ago and I never posted...we have had such a busy summer and the past few weeks have gotten away from me. I can VERY, VERY, VERY happily say that all of Emily's doctors visits are pretty much done for a while (except for endocrine which is next week) and we will actually have some time to catch our breath and enjoy the kids without shuffling them all over town.
Over the past few weeks, we've spent some glorious time at the Mehlinger beach house for the second time this summer. It was really sad to leave this time because we're not returning until October (such a hard life, right!?). The trips with our families this summer have been some of the best of our lives. So. much. fun. My waist line and liver can attest to that. Sometimes, I regret when I stopped pumping. I was literally pumping away the pounds. I got nice and skinny for about one month. I could eat and drink whatever I wanted and it didn't matter. Oh, the days. Now, it's back to watching what I'm eating (kinda if I'm gonna be truthful) and drinking (unless I succumb to peer pressure, which usually happens).
Lilly actually learned to swim this summer, with the help of a life vest, but hey...it's a start and she had a blast doing it!! I am going to get her to my mom's pool everyday next week after nap to wear her out! Emily is also a water-lover which is why we are really eager to get her into aquatic therapy. Hopefully, once we get Medicaid, we can get her into that. Our primary insurance doesn't cover it and we are not in any position to pay for it out of pocket at this point in time. Both girls had a blast swimming with their cousin, Maggie and of course, all their grandmas and grandpas.
Lilly is gearing up for school is September and I think we're all pretty excited about it. She has had a lot of fun lately reading books and I've actually channeled my inner Pinterest mom and gotten some arts and crafts ideas from there for Lilly to do. I've said it a million times, but she really does thrive on structure and there hasn't been too much of that around here in the last four months. Her behavior, as most of you have read, has kinda gotta out of control and we are totally to blame. She has had a ton of adjustment in the last four months with moving, Emily's surgery, constant doctor appointments, a new house, no school and being shuffled around town when Emily's needs must be met. I've started making her sit again in the high chair and put the timer on her to eat dinner. She would drag it out for 30 minutes with only one chicken nugget eaten. I've put her to bed many times without dinner and she hasn't died yet from starvation, so I guess I'll keep at it. She hasn't been allowed snacks anymore either (except at the designated times of 10am and 3:30pm). Her behavior has improved and she's learning to go to her room on her own when she's about to have a meltdown or doesn't like my answer to something she wants. Ohhh, the joys of (almost) three year olds.
In the month of June, we also visited Lilly's BFF, Elloree and they had the best time ever. I literally had a smile plastered on my face the entire time because they played so hard together.
Emily is continuing to make great progress in her physical therapy, and really, every other aspect of life. She definitely doesn't like it when she's given a challenge, but one day, she'll realize that challenges will be thrown her way on a daily basis and she must work to overcome them. Her biggest accomplishment this week was ROLLING OVER from back to front. When she got done and we all shouted and praised her, she gave us the biggest smile in return. We did it over and over until she got, well, pissed! We're also working on getting her to sit up and she's doing quite well. She actually does better without the assistance of the Boppy because it allows her to scoot down and lay back for a little R&R. Our therapist also said not to allow too much time in the Bumbo because it doesn't really promote good posture. It allows her to slump down. We still use it and she actually has gotten much better in just the past week about not slumping forward. She's really using her core to attempt to sit up.
In the past few weeks, Emily has seen the ENT for her ears and as expected, she has fluid in her ears. She also did not do well on her hearing test, so we will go back in 6 weeks for a reevaluation and determine if she needs tubes. We also went to the eye doctor and she checked out perfectly for her vision. She does have clogged tear ducts which makes her eyes constantly water. Sometimes, if she gets really, really mad she cries tears of blood, literally. It's all part of those clogged ducts. We also go back there in 2 months to see if they are any better. If not, she will have to have surgery on them to repair the ducts. This is all very common for those with DS. Emily also got her 6 month shots and DID NOT like those. She cried as soon as she saw the nurse tear open the rubbing alcohol. It was only temporary and she cried so hard she knocked herself out in a matter of minutes. The best part of this visit was that she has indeed gotten bigger, which was already evident from her growing out of 3 month clothing. She weighed in at a porky 13.6 pounds! She's actually in the 25% percentile for her weight (on the DS scale). Yay!
Speaking of Emily, we are ASTOUNDED at the amount of money raised already for the Buddy Walk! I cannot believe how generous you all have been thus far. Please don't forget to also walk with us. We want everyone to actually come to the park and walk. We have designed our t-shirts and I'll have them posted next month for you all to order if you're walking, or if you just simply want one. This walk will be a family and friends event from now on since the proceeds go to help educate, advocate, and promote awareness of Down syndrome.
We are also working diligently of completing her Katie Beckett application and it's driving me crazy! I cannot believe how much paperwork it entails. They literally need every single financial statement and medical record in the history of Earth for her to be approved. We have worked for several hours on a daily basis and as soon as we get our medical records, we can put it all together and submit it. Hopefully, we will get accepted the first time and we won't have to resubmit. By getting this, we will not have the enormous medical bills to pay anymore. It really sucks because we have to fight so hard for something that Emily never had a choice about. She was born with this disability and there was nothing we could have done to prevent it. It just sucks that we have to go through all this.
Alrighty-for now, I'm signing off. Time for dinner! Until later...
Over the past few weeks, we've spent some glorious time at the Mehlinger beach house for the second time this summer. It was really sad to leave this time because we're not returning until October (such a hard life, right!?). The trips with our families this summer have been some of the best of our lives. So. much. fun. My waist line and liver can attest to that. Sometimes, I regret when I stopped pumping. I was literally pumping away the pounds. I got nice and skinny for about one month. I could eat and drink whatever I wanted and it didn't matter. Oh, the days. Now, it's back to watching what I'm eating (kinda if I'm gonna be truthful) and drinking (unless I succumb to peer pressure, which usually happens).
Lilly actually learned to swim this summer, with the help of a life vest, but hey...it's a start and she had a blast doing it!! I am going to get her to my mom's pool everyday next week after nap to wear her out! Emily is also a water-lover which is why we are really eager to get her into aquatic therapy. Hopefully, once we get Medicaid, we can get her into that. Our primary insurance doesn't cover it and we are not in any position to pay for it out of pocket at this point in time. Both girls had a blast swimming with their cousin, Maggie and of course, all their grandmas and grandpas.
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| Lilly and Emily splashing around :) |
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| Maggie and Lilly "sharing". This basically consisted of Lilly giving Maggie toys and then taking them away. |
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| PLEASE ignore my toenails. This was the only bad part of our trip...I broke my pinki toe and then dropped a beer bottle on my big toe :( |
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| Having a blast!! |
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| Catching a few ZZZZZ's on the beach. |
Lilly is gearing up for school is September and I think we're all pretty excited about it. She has had a lot of fun lately reading books and I've actually channeled my inner Pinterest mom and gotten some arts and crafts ideas from there for Lilly to do. I've said it a million times, but she really does thrive on structure and there hasn't been too much of that around here in the last four months. Her behavior, as most of you have read, has kinda gotta out of control and we are totally to blame. She has had a ton of adjustment in the last four months with moving, Emily's surgery, constant doctor appointments, a new house, no school and being shuffled around town when Emily's needs must be met. I've started making her sit again in the high chair and put the timer on her to eat dinner. She would drag it out for 30 minutes with only one chicken nugget eaten. I've put her to bed many times without dinner and she hasn't died yet from starvation, so I guess I'll keep at it. She hasn't been allowed snacks anymore either (except at the designated times of 10am and 3:30pm). Her behavior has improved and she's learning to go to her room on her own when she's about to have a meltdown or doesn't like my answer to something she wants. Ohhh, the joys of (almost) three year olds.
In the month of June, we also visited Lilly's BFF, Elloree and they had the best time ever. I literally had a smile plastered on my face the entire time because they played so hard together.
Emily is continuing to make great progress in her physical therapy, and really, every other aspect of life. She definitely doesn't like it when she's given a challenge, but one day, she'll realize that challenges will be thrown her way on a daily basis and she must work to overcome them. Her biggest accomplishment this week was ROLLING OVER from back to front. When she got done and we all shouted and praised her, she gave us the biggest smile in return. We did it over and over until she got, well, pissed! We're also working on getting her to sit up and she's doing quite well. She actually does better without the assistance of the Boppy because it allows her to scoot down and lay back for a little R&R. Our therapist also said not to allow too much time in the Bumbo because it doesn't really promote good posture. It allows her to slump down. We still use it and she actually has gotten much better in just the past week about not slumping forward. She's really using her core to attempt to sit up.
In the past few weeks, Emily has seen the ENT for her ears and as expected, she has fluid in her ears. She also did not do well on her hearing test, so we will go back in 6 weeks for a reevaluation and determine if she needs tubes. We also went to the eye doctor and she checked out perfectly for her vision. She does have clogged tear ducts which makes her eyes constantly water. Sometimes, if she gets really, really mad she cries tears of blood, literally. It's all part of those clogged ducts. We also go back there in 2 months to see if they are any better. If not, she will have to have surgery on them to repair the ducts. This is all very common for those with DS. Emily also got her 6 month shots and DID NOT like those. She cried as soon as she saw the nurse tear open the rubbing alcohol. It was only temporary and she cried so hard she knocked herself out in a matter of minutes. The best part of this visit was that she has indeed gotten bigger, which was already evident from her growing out of 3 month clothing. She weighed in at a porky 13.6 pounds! She's actually in the 25% percentile for her weight (on the DS scale). Yay!
Speaking of Emily, we are ASTOUNDED at the amount of money raised already for the Buddy Walk! I cannot believe how generous you all have been thus far. Please don't forget to also walk with us. We want everyone to actually come to the park and walk. We have designed our t-shirts and I'll have them posted next month for you all to order if you're walking, or if you just simply want one. This walk will be a family and friends event from now on since the proceeds go to help educate, advocate, and promote awareness of Down syndrome.
We are also working diligently of completing her Katie Beckett application and it's driving me crazy! I cannot believe how much paperwork it entails. They literally need every single financial statement and medical record in the history of Earth for her to be approved. We have worked for several hours on a daily basis and as soon as we get our medical records, we can put it all together and submit it. Hopefully, we will get accepted the first time and we won't have to resubmit. By getting this, we will not have the enormous medical bills to pay anymore. It really sucks because we have to fight so hard for something that Emily never had a choice about. She was born with this disability and there was nothing we could have done to prevent it. It just sucks that we have to go through all this.
Alrighty-for now, I'm signing off. Time for dinner! Until later...
Monday, July 1, 2013
Two Beach Babes :)
Whoooooo weeeee, it's been too long since I last touched this thing! I have not even laid my hands on a computer keyboard for almost a month. Summertime has come and is taking us by storm with all the fun we've been having! We've spent the majority of our summer so far at the beach, bronzing our skin and turning our hair even blonder. Both girls have their first little suntans and it's oh so cute! Lilly's hair is snow white and Emily's...well, it's still brown--borderline red. Where that comes from, I'm not sure! Maybe the mailman.
Emily is progressing along just like she should. She's hitting the milestones that we'd like her to achieve like holding her head up, spending some quality time on her tummy, reaching for toys with purpose, and becoming stronger and stronger at sitting up. She still has very, very low muscle tone in her arms and back, but our physical therapist is fantastic and she is teaching us so many tricks and therapies to get her stronger! I really hope that in a month or so, she'll be sitting up. Fingers crossed!
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I attended a class at Emory on raising children with Down syndrome and it was so informational! There were lawyers, financial advisers, and pediatricians there to help answer questions and provide helpful information. It's extremely important that we have someone in charge of our finances that has Emily's best interest in mind once we're gone. We definitely learned that and all about Special Needs Trusts...basically the only account that we can have for Emily that won't affect her receiving financial assistance. The pediatrician that was there harped on making sure we were on track with all the doctors that we need to see....so after that, I now have a whole new slew of doctors to visit. It's time to get her eyes checked, 6 month shots, visit an ENT, and become established at the Down Syndrome Clinic. Whew! In additional, we have weekly PT which comes at 8am! Talk about getting an early start to the day. Our physical therapist, Mary Elizabeth, is so kind. The whole family approves of her, even Luke. You must get into his circle of trust to become a family member and Mary Elizabeth will be a very important part of our family for the next 3 years. She's a graduate of UGA (which we definitely approve of!), she's young, and attentive to both my needs and questions as well as Emily's willingness to "participate" in PT. Even at a young 6 months, my little sunflower has quiet the attitude and will let one know if she's not willing to work.
Emily has learned how to blow bubbles with her mouth and wiggle her way around the entire crib with her buns of steel. She uses her lower body constantly. She will have very muscular legs, that's for sure. She loves to hold her hands to her mouth and give the biggest smiles...this is especially done when she's eating, much to my dismay. Speaking of eating, she is a PIGlet when it comes to eating baby food. I have not come across one food that the child didn't love. We may be in trouble! She is literally inhaling the baby food. Now that she gets the good stuff (well, I wouldn't say pureed carrots is good...), she doesn't think she needs bottles anymore. I still have a little breast milk left, but that's going to come to an end soon too. When I say she's a piglet, I mean it. I guess she's making up for all the lost time and struggle of feeding before surgery. Anyhow, she's doing GREAT and loving life.
Our other little angel is just that, an angel, that occasionally wears devil horns. The things that she says these days baffle me. Where do two year olds come up with some of their comments?!! As I am typing, she is asking me what I'm doing and with no response from me, she yells, "TALK TO ME!" and proceeds to tell me that I'm not very nice. She talks 24/7, literally. She doesn't rest her voice. The beach was a whole new experience for her this year and after one whole week of being terrified of the ocean and waves, her uncles finally convinced her to go in the water and play. From then on, it was perfect! She loved building sandcastles, chasing the birdies, and swimming in the pool after her 3 or 4 hour(yes, you read right) nap. I suppose all the fun in the sun just wore her out!
Lilly is in love with gymnastics and does somersaults all over the house on a daily basis. I think doing something like dance or gymnastics is just what she needs. She can run and jump and hop and which is perfect for her petite little frame. She is such a munchkin. After being at the beach for two weeks, I became very frustrated at the fact that over 1/2 of her new bathing suits were too nig in the waist. Once we got back from the beach, I headed to the attic to big through last summer's tub of clothing and drug out all her old suits as well as some shorts that STILL FIT! She wore an 18 month outfit yesterday and is wearing 12-18 month shorts today. She is nothing but skin and bones-and trust me...we don't go light on the fruit snacks and goldfish over here.
Life is about to get just a weeeee bit harder because my paychecks from work have officially....S.T.O.P.P.E.D!! Yikes!!!! This is definitely going to be very, very, very hard to a girl like me that finds an errand to run daily. It's also hard on "slow" days to sit around the house and think of all the decorating that needs to be done on a negative budget! We now live in this big house with only 75% of it furnished. Maybe we will win the lottery or fall into some big fortune by a long, lost relative (that we don't know of).
Mothering is calling me now. Emily is winding down for the night and this is her fussy time---which is why I gave into the pact that Billy and I made that we would not have a beer until our anniversary (this Friday-5 years!)....the 6:00pm hour calls for beveraging. Plain and simple. I give in. Oops!
Until later...!
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| Reading with her Papa Joe at the beach. She loves being read to! |
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| Enjoying the ocean breeze! |
Emily is progressing along just like she should. She's hitting the milestones that we'd like her to achieve like holding her head up, spending some quality time on her tummy, reaching for toys with purpose, and becoming stronger and stronger at sitting up. She still has very, very low muscle tone in her arms and back, but our physical therapist is fantastic and she is teaching us so many tricks and therapies to get her stronger! I really hope that in a month or so, she'll be sitting up. Fingers crossed!
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I attended a class at Emory on raising children with Down syndrome and it was so informational! There were lawyers, financial advisers, and pediatricians there to help answer questions and provide helpful information. It's extremely important that we have someone in charge of our finances that has Emily's best interest in mind once we're gone. We definitely learned that and all about Special Needs Trusts...basically the only account that we can have for Emily that won't affect her receiving financial assistance. The pediatrician that was there harped on making sure we were on track with all the doctors that we need to see....so after that, I now have a whole new slew of doctors to visit. It's time to get her eyes checked, 6 month shots, visit an ENT, and become established at the Down Syndrome Clinic. Whew! In additional, we have weekly PT which comes at 8am! Talk about getting an early start to the day. Our physical therapist, Mary Elizabeth, is so kind. The whole family approves of her, even Luke. You must get into his circle of trust to become a family member and Mary Elizabeth will be a very important part of our family for the next 3 years. She's a graduate of UGA (which we definitely approve of!), she's young, and attentive to both my needs and questions as well as Emily's willingness to "participate" in PT. Even at a young 6 months, my little sunflower has quiet the attitude and will let one know if she's not willing to work.
Emily has learned how to blow bubbles with her mouth and wiggle her way around the entire crib with her buns of steel. She uses her lower body constantly. She will have very muscular legs, that's for sure. She loves to hold her hands to her mouth and give the biggest smiles...this is especially done when she's eating, much to my dismay. Speaking of eating, she is a PIGlet when it comes to eating baby food. I have not come across one food that the child didn't love. We may be in trouble! She is literally inhaling the baby food. Now that she gets the good stuff (well, I wouldn't say pureed carrots is good...), she doesn't think she needs bottles anymore. I still have a little breast milk left, but that's going to come to an end soon too. When I say she's a piglet, I mean it. I guess she's making up for all the lost time and struggle of feeding before surgery. Anyhow, she's doing GREAT and loving life.
Our other little angel is just that, an angel, that occasionally wears devil horns. The things that she says these days baffle me. Where do two year olds come up with some of their comments?!! As I am typing, she is asking me what I'm doing and with no response from me, she yells, "TALK TO ME!" and proceeds to tell me that I'm not very nice. She talks 24/7, literally. She doesn't rest her voice. The beach was a whole new experience for her this year and after one whole week of being terrified of the ocean and waves, her uncles finally convinced her to go in the water and play. From then on, it was perfect! She loved building sandcastles, chasing the birdies, and swimming in the pool after her 3 or 4 hour(yes, you read right) nap. I suppose all the fun in the sun just wore her out!
Lilly is in love with gymnastics and does somersaults all over the house on a daily basis. I think doing something like dance or gymnastics is just what she needs. She can run and jump and hop and which is perfect for her petite little frame. She is such a munchkin. After being at the beach for two weeks, I became very frustrated at the fact that over 1/2 of her new bathing suits were too nig in the waist. Once we got back from the beach, I headed to the attic to big through last summer's tub of clothing and drug out all her old suits as well as some shorts that STILL FIT! She wore an 18 month outfit yesterday and is wearing 12-18 month shorts today. She is nothing but skin and bones-and trust me...we don't go light on the fruit snacks and goldfish over here.
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| Poor bear. If you look closely, he's wearing Luke's dog collar. Lilly could play with her bear for days! |
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| These two pictures capture her personality to a T! |
Life is about to get just a weeeee bit harder because my paychecks from work have officially....S.T.O.P.P.E.D!! Yikes!!!! This is definitely going to be very, very, very hard to a girl like me that finds an errand to run daily. It's also hard on "slow" days to sit around the house and think of all the decorating that needs to be done on a negative budget! We now live in this big house with only 75% of it furnished. Maybe we will win the lottery or fall into some big fortune by a long, lost relative (that we don't know of).
Mothering is calling me now. Emily is winding down for the night and this is her fussy time---which is why I gave into the pact that Billy and I made that we would not have a beer until our anniversary (this Friday-5 years!)....the 6:00pm hour calls for beveraging. Plain and simple. I give in. Oops!
Until later...!
Thursday, June 6, 2013
Summertime is here!
Sweet, sweet summer is here and the fun has begun! It stills feels weird to be spending our summer in Atlanta and not in Charleston. This summer is an adjustment for all...Lilly is not in school and staying home all day, there are TWO kids, not one...and it's a loooonnngggg way to the beach :( I got a little taste of Charleston fun last weekend when I went to clean out my classroom, thus closing that chapter in life for a while. I know that at some point, I must return to the classroom, or at least something in the educational field. Six years of teaching fit onto two shelves in our shed. It was kinda sad looking at it all packed up. My friends talked about the impact students said they made on their lives as they looked back on the school year and I miss that feeling, a lot. My sub said kids were crying about not seeing me one final time. I didn't really want to go back the day school ended and get them all fired up. All teachers know what the last day of school is like and coming in would have created a disaster! Anyhow, that chapter is closed-for now-and I am enjoying my new occupation as "mothering". Those that say a stay-at-home mom has an easy job deserved to be slapped. It's much more difficult than people think. Sometimes I long for a day at work in a building other than my own home. I'm jealous at times that Billy gets to go and talk to ADULTS! With all this said though, I wouldn't trade this job for the world :)
A few weeks ago, I enrolled Lilly in gymnastics and she loves, loves, loves it. It's such an outlet for her to go somewhere and run WILD. She thrives on structure and the class provides just that. As I was watching her yesterday, I was reminded of how much she needs school and really enjoys the routines and structures of teachers. It's just her personality. She has a blast here at home playing babies and kitchen, but August will be fun for her when she goes back to school part-time. (I am currently watching her "read" to her baby that's in Emily's carrier-so sweet).
I know that Lilly is really happy to be near all her aunts and uncles and grandparents, especially. She begs to see all her Papas and never, ever, ever looks back when she has a sleep over at Grammys. She's out the door before I even have a chance to say goodbye. I remember staying over at my grandmothers as a young girl and it was so much fun! We did things that mommy's and daddy's don't do. Soon enough, Emmie will be flying out the door right along with Lilly.
Lilly also had a playdate this week with a new friend, Astrid, and she had so. much. fun. It was awesome for her to get out and play with someone other than myself and her pretend dolls. She conversates with them on a daily basis and it was nice to see her actually interact with someone else and see the joy the day brought to her. She's currently napping after wearing herself O-U-T!
Emily is doing great as time progresses! She's still working on strength and she's definitely stronger. When I pick her up out of the crib, she's much sturdier and not as floppy. You still can't carry her on your shoulder without her flopping backwards, so one hand is always a must. In addition, she still can't be carried on the hip-which I long for! Our therapist said not to do that anyways because it's not good for the hips (in kids with DS). Boo on that. She's doing really, really, really good with tummy time and is holding her head up for extended periods of time. She don't love tummy time, but I haven't met a baby that did.
Even with all the positives, there's always some negative to my week in the realization that I have a special needs child. Will I ever get over that and just accept it? I always seem to look for other kids with DS and judge them (because I'm known for judging). I just can't seem to help it. I look at height, necks, arm length, eye structure...and I wonder deeply what Emily will look like. At gymnastics class, there's another mom that has to bring her baby while her toddler plays and she's two weeks younger than Emily and at least twice her size. While the toddlers were playing with balls, the other mother had her baby on the mats, SITTING UP all by herself. Whattttt? We work tirelessly in the Bumbo and the Boppy trying to get some back strength and nada. No sitting up. No attempt. Falling only. Even though kids with DS meet their milestones much later, it's still hard to accept. It seems like I will always be judging Emily based on other kids. I know that I will stop, but it's only been 5 months of having her in my life. Do all parents with special needs kids go through this? I'm taking a class this Saturday on raising a child with DS and it helps parents understand milestones and what to look for (as well as coaching me on this damn Katie Beckett stuff). Later in life, there are even more battles to fight when Emily gets older. While this may be very aggressive, some parents actually have their kids tubes tied that have special needs. What if Emily goes off to special needs camp and falls in love with another camper and they do the wild thing? And she gets pregnant! It's highly unlikely considering those with Down syndrome are usually infertile, but it could happen. Some get a hysterectomy because they cannot manage their periods. WWWWHHHHAAAATTTT? I mean, this is crazy, right!!?? Despite how wrong I see these things as-they are realistic, and they are things we must think of because we really don't know what our path will look like 15 years down the road. We gotta think long term and short term. I'm stuck in the short term, but I think that's what I need. One. Step. At. A. Time.
Anyhow, despite all this thinking I've been doing, life is grand and Billy and I are really happy to be in Atlanta closer to family. We have our own first slumber party this weekend with friends and the kids are spending the night at Grammy and Papa Joe's house while mommy and daddy act like fools. All this serious business we've been through calls for a little playdate of our own :)
Off to take 5 minutes to relax before one of my children needs me attention :)
A few weeks ago, I enrolled Lilly in gymnastics and she loves, loves, loves it. It's such an outlet for her to go somewhere and run WILD. She thrives on structure and the class provides just that. As I was watching her yesterday, I was reminded of how much she needs school and really enjoys the routines and structures of teachers. It's just her personality. She has a blast here at home playing babies and kitchen, but August will be fun for her when she goes back to school part-time. (I am currently watching her "read" to her baby that's in Emily's carrier-so sweet).
I know that Lilly is really happy to be near all her aunts and uncles and grandparents, especially. She begs to see all her Papas and never, ever, ever looks back when she has a sleep over at Grammys. She's out the door before I even have a chance to say goodbye. I remember staying over at my grandmothers as a young girl and it was so much fun! We did things that mommy's and daddy's don't do. Soon enough, Emmie will be flying out the door right along with Lilly.
Lilly also had a playdate this week with a new friend, Astrid, and she had so. much. fun. It was awesome for her to get out and play with someone other than myself and her pretend dolls. She conversates with them on a daily basis and it was nice to see her actually interact with someone else and see the joy the day brought to her. She's currently napping after wearing herself O-U-T!
Emily is doing great as time progresses! She's still working on strength and she's definitely stronger. When I pick her up out of the crib, she's much sturdier and not as floppy. You still can't carry her on your shoulder without her flopping backwards, so one hand is always a must. In addition, she still can't be carried on the hip-which I long for! Our therapist said not to do that anyways because it's not good for the hips (in kids with DS). Boo on that. She's doing really, really, really good with tummy time and is holding her head up for extended periods of time. She don't love tummy time, but I haven't met a baby that did.
Even with all the positives, there's always some negative to my week in the realization that I have a special needs child. Will I ever get over that and just accept it? I always seem to look for other kids with DS and judge them (because I'm known for judging). I just can't seem to help it. I look at height, necks, arm length, eye structure...and I wonder deeply what Emily will look like. At gymnastics class, there's another mom that has to bring her baby while her toddler plays and she's two weeks younger than Emily and at least twice her size. While the toddlers were playing with balls, the other mother had her baby on the mats, SITTING UP all by herself. Whattttt? We work tirelessly in the Bumbo and the Boppy trying to get some back strength and nada. No sitting up. No attempt. Falling only. Even though kids with DS meet their milestones much later, it's still hard to accept. It seems like I will always be judging Emily based on other kids. I know that I will stop, but it's only been 5 months of having her in my life. Do all parents with special needs kids go through this? I'm taking a class this Saturday on raising a child with DS and it helps parents understand milestones and what to look for (as well as coaching me on this damn Katie Beckett stuff). Later in life, there are even more battles to fight when Emily gets older. While this may be very aggressive, some parents actually have their kids tubes tied that have special needs. What if Emily goes off to special needs camp and falls in love with another camper and they do the wild thing? And she gets pregnant! It's highly unlikely considering those with Down syndrome are usually infertile, but it could happen. Some get a hysterectomy because they cannot manage their periods. WWWWHHHHAAAATTTT? I mean, this is crazy, right!!?? Despite how wrong I see these things as-they are realistic, and they are things we must think of because we really don't know what our path will look like 15 years down the road. We gotta think long term and short term. I'm stuck in the short term, but I think that's what I need. One. Step. At. A. Time.
Anyhow, despite all this thinking I've been doing, life is grand and Billy and I are really happy to be in Atlanta closer to family. We have our own first slumber party this weekend with friends and the kids are spending the night at Grammy and Papa Joe's house while mommy and daddy act like fools. All this serious business we've been through calls for a little playdate of our own :)
Off to take 5 minutes to relax before one of my children needs me attention :)
Tuesday, May 21, 2013
One happy girl...
The past week and a half have been fantastic with both of our little rays of sunshine! The weather has finally gotten nice out and both girls are enjoying playing outside. Our sweet Emily is chugging along, growing like a massive weed! She is actually beginning to look fat-can you believe it!? Her legs are huge, and well, her head is in like the 90th percentile. It's a big one. Her belly looks like a buddah took over. While these features are common of DS kids, I can easily ignore those factors and relish in the fact that she's in 3 month clothes and those are quickly becoming tight! Yes! I also cannot stop smiling at the fact that this Friday, she gets to go back on breast milk. I know she doesn't know what it means, but I am so, so, so excited for this. I worked incredibly hard to get as much milk stored as I possible could before surgery and I am eager to begin using it! I declare it a major labor of love to pump every three hours for 4 straight months. Pumping, my friends, is very different than actually nursing. More cleaning, more time, more everything. Lilly was a champ nurser, so I can easily tell the difference in the frustration and time consumption. I have 4 cases left of the Enfaport, the formula she's on, and hopefully we can send that back next week. We will have to get a chest Xray next week to check her lungs and surrounding areas to make sure fat did not build back up. If all goes well, bye bye formula. She's finally gotten used to it and is not throwing it back up with every feed. The doctor did warn us of that...he said most babies find it so disgusting they vomit everytime, resulting in a feeding tube (which was our situation for quiet some time). Things just keep looking up for sweet Emily.
Emily's disposition is one of pure joy. I swear the kid is just happy to be alive. She's endured so much in her little life already that every smile someone gives to her, she returns one immediately. She's happy and sweet spirited. When she smiles, it's big, real big! She loves to suck her thumb, which I suppose is better than Lilly's addition to the pacifier. She is also beginning to hold her head up much better. If I put her in the sitting up position, she will sit against me and actually keep her head up without bobbing it. One step forward! She is finally getting her PT evaluation this Friday and I am happy to finally begin these services again. Her features of looking like a child with Down syndrome are becoming more predominant, and I have had two people ask me recently if she has Downs. Like I've said before, I'd rather people ask me than stare! It has been people that have siblings with DS, so I assume they know what to look for.
Speaking of my big ball of energy, Lilly---we are beyond proud of her for using the big girl potty! She is so proud each time she goes to the potty. The one drawback of potty training is that she thinks that everytime she pees, she must shed every article of clothing she's wearing-and doesn't want to put it back on. I've started to put her in only dresses so that it's only one item to put back on after she goes. She is scared to go in public places and held it for at least 3 hours while we shopped at Lakewood 400 and traveled back home. She gets that from me. Apparently when I was little, I was scared to go in unsanitary places. I still am.
We're headed to the beach for two weeks in June and I think we are all excited to escape the house for a little sliver of paradise. Billy's parent's new house in Anna Maria is absolutely breath taking and makes you feel like you're in a bubble land. I can't wait to get Emily's toes into the sand for the first time. If she's like her big sister, she'll be eating the sand, running wild, and screaming for joy when she sees the ocean :) So much to look forward to!
Emily's disposition is one of pure joy. I swear the kid is just happy to be alive. She's endured so much in her little life already that every smile someone gives to her, she returns one immediately. She's happy and sweet spirited. When she smiles, it's big, real big! She loves to suck her thumb, which I suppose is better than Lilly's addition to the pacifier. She is also beginning to hold her head up much better. If I put her in the sitting up position, she will sit against me and actually keep her head up without bobbing it. One step forward! She is finally getting her PT evaluation this Friday and I am happy to finally begin these services again. Her features of looking like a child with Down syndrome are becoming more predominant, and I have had two people ask me recently if she has Downs. Like I've said before, I'd rather people ask me than stare! It has been people that have siblings with DS, so I assume they know what to look for.
Speaking of my big ball of energy, Lilly---we are beyond proud of her for using the big girl potty! She is so proud each time she goes to the potty. The one drawback of potty training is that she thinks that everytime she pees, she must shed every article of clothing she's wearing-and doesn't want to put it back on. I've started to put her in only dresses so that it's only one item to put back on after she goes. She is scared to go in public places and held it for at least 3 hours while we shopped at Lakewood 400 and traveled back home. She gets that from me. Apparently when I was little, I was scared to go in unsanitary places. I still am.
We're headed to the beach for two weeks in June and I think we are all excited to escape the house for a little sliver of paradise. Billy's parent's new house in Anna Maria is absolutely breath taking and makes you feel like you're in a bubble land. I can't wait to get Emily's toes into the sand for the first time. If she's like her big sister, she'll be eating the sand, running wild, and screaming for joy when she sees the ocean :) So much to look forward to!
Saturday, May 11, 2013
On the Mend!
Great news this week as many of you have already read about Emily! I think I am more excited than she is to have the feeding tube taken out and to know that in only two weeks she can go back to breast milk. I cannot imagine having to drink the nasty formula she's been on. It smells so bad--10x worse when it comes up. She seems to finally be used to it and no longer gags when she feeds. When we left the hospital, the surgeon assured us that we would be on a feeding tube for quiet some time because many babies reject the formula due to taste and it just has to be pumped into them. Thank goodness Emily was a trooper! The cardiologist is still a little concerned about her weight gain. She's still not at 10 pounds and will be 5 months old tomorrow. She weighed in a 9 pounds 12 oz. I MUST wake up in the night (now that the tube is gone and not giving a constant drip all night) to feed her- at least once. Last night I woke up at midnight and she ate an entire bottle, but at 4am, she wanted nothing to do with eating. We have to continue feeding in the night to make sure she consumes enough calories throughout the day for both body and brain growth. I'm pretty tired today, so I think I'll be drinking more coffee throughout the day!
We also signed all the paperwork to begin services through Babies Can't Wait. It seems to move MUCH slower in Georgia than it did in SC. We received physical therapy within a week of filling out the paperwork in South Carolina. I have been to two evaluation meetings here and it will still be another few weeks for the physical therapist to come evaluate Emily to see if she qualifies. I got somewhat snippy with the lady that said this because I could not fathom how a child born with DS would not qualify for therapy. She's like a limp dishrag! How would it do her any good in the long run to not receive services for strength and muscle tone? When people said it's a constant battle when you have kids with disabilities, I now see what they mean. Advocate is a major word in my vocabulary and I foresee it being that way forever.
It's still pretty difficult to see friends of Facebook that post pictures of their two month olds that are sturdy and holding their head up...Emily is no where near that. She is still like a newborn. No strength. Her legs do have some tone though and she loves lifting them high in the air. It's so funny to watch her at night play in her crib while trying to go to sleep. Her arms though will fall to the ground when you lift them. Her head still bobbles around. It's difficult. The lady that had me sign paperwork for BCW said she most likely won't walk until she's 2 (which I knew, but when you hear it out loud, it's different). I also had someone ask me yesterday if Emily had Down syndrome. It's the first time I've ever been asked. I would MUCH rather someone ask me if she has it than to stare. If you know me well, you know I don't mind answering questions, so I was actually happy she asked me (it happened to be a lady in the cardiologist's office...which I am sure she put two and two together that Emily had surgery and looked a little different-as most kids with DS have heart surgeries and frequent the cardiologist).
Lilly started gymnastics this week and LOVED it! We will have to get her a little leotard. All the other girls wore one and I know she will look as cute as a button in one :) I'm taking both the girls next week to get some pictures done because we're about 4 months behind on them! I can't wait to get some updated pictures of them around the house.
All is well here-we're taking it one day at a time!
We also signed all the paperwork to begin services through Babies Can't Wait. It seems to move MUCH slower in Georgia than it did in SC. We received physical therapy within a week of filling out the paperwork in South Carolina. I have been to two evaluation meetings here and it will still be another few weeks for the physical therapist to come evaluate Emily to see if she qualifies. I got somewhat snippy with the lady that said this because I could not fathom how a child born with DS would not qualify for therapy. She's like a limp dishrag! How would it do her any good in the long run to not receive services for strength and muscle tone? When people said it's a constant battle when you have kids with disabilities, I now see what they mean. Advocate is a major word in my vocabulary and I foresee it being that way forever.
It's still pretty difficult to see friends of Facebook that post pictures of their two month olds that are sturdy and holding their head up...Emily is no where near that. She is still like a newborn. No strength. Her legs do have some tone though and she loves lifting them high in the air. It's so funny to watch her at night play in her crib while trying to go to sleep. Her arms though will fall to the ground when you lift them. Her head still bobbles around. It's difficult. The lady that had me sign paperwork for BCW said she most likely won't walk until she's 2 (which I knew, but when you hear it out loud, it's different). I also had someone ask me yesterday if Emily had Down syndrome. It's the first time I've ever been asked. I would MUCH rather someone ask me if she has it than to stare. If you know me well, you know I don't mind answering questions, so I was actually happy she asked me (it happened to be a lady in the cardiologist's office...which I am sure she put two and two together that Emily had surgery and looked a little different-as most kids with DS have heart surgeries and frequent the cardiologist).
Lilly started gymnastics this week and LOVED it! We will have to get her a little leotard. All the other girls wore one and I know she will look as cute as a button in one :) I'm taking both the girls next week to get some pictures done because we're about 4 months behind on them! I can't wait to get some updated pictures of them around the house.
All is well here-we're taking it one day at a time!
Saturday, May 4, 2013
A new beginning...
Life is moving right along for us all. It is truly amazing how different Emily already is with her "new" heart. She has come alive. She coos, wiggles 24/7, tracks objects consistently, has grown and actually seems like she enjoys life! I didn't think we would see a difference in the way she would react to the surgery so quickly. She no longer sleeps the day away and loves being in the middle of everything we're doing. She is FASCINATED by Lilly. Every single move Lilly makes is tracked by Emily. She loves when Lilly plays with her feet, "feeds" her, and gives her kisses like I do. Lilly I suppose feels like she's her mama. She helps pick out outfits, bathe her, change her, and even knows how to check the placement of Emily's feeding tube before administering meds or milk. I caught her playing doctor to Emily the other day while she didn't know I was looking. It was hilarious and touching all at the same time. Lilly cares for her sister more than I ever knew a 2 year old could. She's so cautious and reminds everyone of her booboo and that we must be careful. She never gets frustrated when Emily needs extra attention or if she can't sit on my lap because Emily needs me. Lilly is such a kind, gentle soul. I'm not exactly sure where she got that from because both Billy and I are impulsive and I, frankly, am very impatient. This journey has taught me extreme patience, but sometimes it definitely hard to control!
We had great company last week with the visit of Lilly and Emily's aunts, Creeden and Gail. They came to see our girls and Lilly of course was smitten to have them here. They were bossed around the entire time they were here, but Lilly was in heaven. We miss our friends in Charleston everyday. It doesn't get any easier. It never got easier when we lived in CHS and had all our Atlanta friends here. We cherished all the trips home and quick visits and I suppose that's what we will do with our forever friends there! I am prepping for a trip to Charleston at the end of the month because I still have my entire classroom to pack and move. I'm not looking forward to that. There has been a long-term sub filling my position for the year, but it's time to wrap up that chapter and put things into storage. I'm taking another year off from teaching to get my feet back on the ground and figure out what life is like with a special needs child-or what normal life is like with two! So far, it's extremely hectic and I'm not sure how people ever find time to work with more than one child. I'm currently doing laundry load #5 of the day and it's only 11:28am. There's no time for the paid kind of work!
We have signed Lilly up for gymnastics classes at The Little Gym so that she can get some of her endless energy out. She gets that from her Uncle Matt. It must run in the blood line because she never tires. Her constant talking comes from her Grammy and her sense of caring and patience must be a combination of her Mimi and Nana. Emily is finally going to begin therapy this Wednesday. The Early Interventionist will be over to write up her IFSP, or goals and developmental milestones that she should meet for her age. We're not cleared to do heavy duty work with her until 6 weeks. I fear that she definitely has lost more muscle tone in her neck because we have not done tummy time in weeks. She is sitting in her Bumbo again so that will hopefully help a little. She was denied SSI and Medicaid which is very frustrating because we are literally drowning in medical bills. Her surgery was $128,000. On top of that, there are various other medical expense bills that keep rolling in. Just because we make money doesn't mean that we can pay all the expenses. Her disability was not something I chose and I just don't understand the justification as to why we cannot receive assistance. We will most likely reapply after my paychecks stop from the school district...which is not until August-so until then, I should probably just send CHOA my checking account number for autodraft. Ha!
As for Emily's recovery, it's going perfectly. Her scar looks like a little zipper. I meant to take a picture and post it on here but she's sleeping and I don't want to wake her. I'll have to post one next time. It's not scary or gross looking at all. It's healed almost all the way. She's still feeding at night by tube, which, for the second time last night, she decided to pull out! I am pretty sure she's making her point that it sucks to have it in. I am going to beg the cardiologist to let us take it out next week. I'll commit to waking up at night and giving her an extra feed. It's making bug red marks on her face and I can only imagine how uncomfortable it is. If she has shown significant weight gain, he may be on board with my compromise :)
Off to shower for my brother's graduation! He graduates from GA Tech today with a degree in Physics and a minor in Japanese. Who does that!!?? He's off to Columbia in NYC in the fall. I'm so proud of him! Plus, to be selfish...this allows for a date night for Billy and I while we celebrate with the family :) Whooo hoo!
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| Doctor Lilly Mehlinger |
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| Sisterly Snuggles |
We had great company last week with the visit of Lilly and Emily's aunts, Creeden and Gail. They came to see our girls and Lilly of course was smitten to have them here. They were bossed around the entire time they were here, but Lilly was in heaven. We miss our friends in Charleston everyday. It doesn't get any easier. It never got easier when we lived in CHS and had all our Atlanta friends here. We cherished all the trips home and quick visits and I suppose that's what we will do with our forever friends there! I am prepping for a trip to Charleston at the end of the month because I still have my entire classroom to pack and move. I'm not looking forward to that. There has been a long-term sub filling my position for the year, but it's time to wrap up that chapter and put things into storage. I'm taking another year off from teaching to get my feet back on the ground and figure out what life is like with a special needs child-or what normal life is like with two! So far, it's extremely hectic and I'm not sure how people ever find time to work with more than one child. I'm currently doing laundry load #5 of the day and it's only 11:28am. There's no time for the paid kind of work!
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| Aunt Creeden and Gail with the girls watching The Wiggles. |
We have signed Lilly up for gymnastics classes at The Little Gym so that she can get some of her endless energy out. She gets that from her Uncle Matt. It must run in the blood line because she never tires. Her constant talking comes from her Grammy and her sense of caring and patience must be a combination of her Mimi and Nana. Emily is finally going to begin therapy this Wednesday. The Early Interventionist will be over to write up her IFSP, or goals and developmental milestones that she should meet for her age. We're not cleared to do heavy duty work with her until 6 weeks. I fear that she definitely has lost more muscle tone in her neck because we have not done tummy time in weeks. She is sitting in her Bumbo again so that will hopefully help a little. She was denied SSI and Medicaid which is very frustrating because we are literally drowning in medical bills. Her surgery was $128,000. On top of that, there are various other medical expense bills that keep rolling in. Just because we make money doesn't mean that we can pay all the expenses. Her disability was not something I chose and I just don't understand the justification as to why we cannot receive assistance. We will most likely reapply after my paychecks stop from the school district...which is not until August-so until then, I should probably just send CHOA my checking account number for autodraft. Ha!
As for Emily's recovery, it's going perfectly. Her scar looks like a little zipper. I meant to take a picture and post it on here but she's sleeping and I don't want to wake her. I'll have to post one next time. It's not scary or gross looking at all. It's healed almost all the way. She's still feeding at night by tube, which, for the second time last night, she decided to pull out! I am pretty sure she's making her point that it sucks to have it in. I am going to beg the cardiologist to let us take it out next week. I'll commit to waking up at night and giving her an extra feed. It's making bug red marks on her face and I can only imagine how uncomfortable it is. If she has shown significant weight gain, he may be on board with my compromise :)
Off to shower for my brother's graduation! He graduates from GA Tech today with a degree in Physics and a minor in Japanese. Who does that!!?? He's off to Columbia in NYC in the fall. I'm so proud of him! Plus, to be selfish...this allows for a date night for Billy and I while we celebrate with the family :) Whooo hoo!
Friday, April 26, 2013
Smiles for all!
Well, the surgery came and went and life is 100x better now that we're all home and settled. Living as a fragmented family for a week was really difficult. Billy and I missed each other; we missed Lilly, and I must say, at times, I actually missed Luke (it hurts to type this). Our house was a disaster area for a week straight, but thanks to amazing family, it's back in order as of 20 minutes ago. The "twins" as we call them, Grandma and her sister, Pearl, came over this morning while I was at the doctor with Emily and did 4 loads of laundry and whipped this place back into shape! We have eaten like royalty and despite all the cakes and casseroles, I am pleased to say that I have not gained a pound over the course of this event! I thought sitting in the hospital all day eating chocolate and drinking enormous amounts of caffeine would really pack on the pounds, but I guess my brain has been on overload and burned calories for me.
When Emily came home, it was absolutely bittersweet. Lilly was SO EXCITED to see her! She demanded that I put her down to see her. She was a little scared by the feeding tube, but she was fascinated by her big "boo boo". Being the dramatic girl she is, Lilly created her own "boo boo" and now wears a bandage to show she's brave too. Lilly has been amazing with Emily since we've been home. She understands that Emily needs a little extra TLC and requires more work than before. She helps administer medicine, grabs burp cloths, and of course, is always in on the action when it's time to change diapers.
Just because Emily is home doesn't mean it's all roses and sunshine. She has reverted to being a newborn again. We took two steps forward but two steps back as well. Her heart is doing phenomenal. We saw the cardiologist this morning and he was so pleased with how everything looks. Her valves will always be somewhat "leaky"...that's just the nature of her defect. The fat build up around her lungs has completely gone away with the new formula. Speaking of formula...this stuff is no joke. It's DISGUSTING and I'm wearing it everyday by 9am. It's not like normal baby formula. It's thick and rich and obviously is difficult to digest because Emily never keeps it down. She now only takes 2oz of milk every three hours. She gets a drip through the feeding tube at night for 8 hours-an ounce an hour. They are trying to get her to "catch up" (on weight) from before surgery. She still sucks really well from the bottle even with the tube down her throat. The doctor said another month on the tube and formula and then hopefully she can go back to breast milk. Hopefully can happen because if not, I've got 5 months worth of frozen milk to donate!
Nighttime is difficult for Emmie. She wakes up several times, cries out, and it's very difficult to sooth her. Being held too much or moved around is, for obvious reasons, uncomfortable. I don't know what her cries mean anymore. Before surgery, she cried only when she was hungry. Now she's much fussier. I know it's probably discomfort, but it's hard to decide sometimes. Reverting back to infancy, we are constantly questioning ourselves if it's hunger, over stimulation, exhaustion, pain, or just attention seeking. Just when we thought we had it all figured out....
Life is getting back to normal and hopefully the next 6 weeks of her recovery will go by quickly and we can enjoy our summer. We have some great trips planned with the family to the beach and I think we are all definitely over due for some R&R. As I've said a million times, this journey would not have been possible without our family who helped in more ways than I can possibly list and the masses of friends who pitched in or just offered prayers, kind words, and constant thoughts. Every person in our life made this possible and we are so glad you are on the journey with us!
When Emily came home, it was absolutely bittersweet. Lilly was SO EXCITED to see her! She demanded that I put her down to see her. She was a little scared by the feeding tube, but she was fascinated by her big "boo boo". Being the dramatic girl she is, Lilly created her own "boo boo" and now wears a bandage to show she's brave too. Lilly has been amazing with Emily since we've been home. She understands that Emily needs a little extra TLC and requires more work than before. She helps administer medicine, grabs burp cloths, and of course, is always in on the action when it's time to change diapers.
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| First home snuggles |
Just because Emily is home doesn't mean it's all roses and sunshine. She has reverted to being a newborn again. We took two steps forward but two steps back as well. Her heart is doing phenomenal. We saw the cardiologist this morning and he was so pleased with how everything looks. Her valves will always be somewhat "leaky"...that's just the nature of her defect. The fat build up around her lungs has completely gone away with the new formula. Speaking of formula...this stuff is no joke. It's DISGUSTING and I'm wearing it everyday by 9am. It's not like normal baby formula. It's thick and rich and obviously is difficult to digest because Emily never keeps it down. She now only takes 2oz of milk every three hours. She gets a drip through the feeding tube at night for 8 hours-an ounce an hour. They are trying to get her to "catch up" (on weight) from before surgery. She still sucks really well from the bottle even with the tube down her throat. The doctor said another month on the tube and formula and then hopefully she can go back to breast milk. Hopefully can happen because if not, I've got 5 months worth of frozen milk to donate!
Nighttime is difficult for Emmie. She wakes up several times, cries out, and it's very difficult to sooth her. Being held too much or moved around is, for obvious reasons, uncomfortable. I don't know what her cries mean anymore. Before surgery, she cried only when she was hungry. Now she's much fussier. I know it's probably discomfort, but it's hard to decide sometimes. Reverting back to infancy, we are constantly questioning ourselves if it's hunger, over stimulation, exhaustion, pain, or just attention seeking. Just when we thought we had it all figured out....
Life is getting back to normal and hopefully the next 6 weeks of her recovery will go by quickly and we can enjoy our summer. We have some great trips planned with the family to the beach and I think we are all definitely over due for some R&R. As I've said a million times, this journey would not have been possible without our family who helped in more ways than I can possibly list and the masses of friends who pitched in or just offered prayers, kind words, and constant thoughts. Every person in our life made this possible and we are so glad you are on the journey with us!
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