Shortfalls

I find that I fall short in so much of life. My house is never clean enough, never organized enough, the laundry is always in a pile somewhere (clean, but unfolded; folded, but not put away; not done and overflowing from the hamper; or currently, all of the above - and yet there are clothes in the closets and drawers...clearly we have too much). Work is never finished, although I do need my paycheck to make ends meet and so it is always mostly done. And then the kids, they never have enough of my time, enough of my niceness, enough of my playfulness, enough activities. I feel like I am always apologizing, which frustrates me, but I am apparently physically incapable of not apologizing even when my heart and head are saying "it is okay, your house is okay, you have a busy life, people get it without being told!!!"

Anyways, this came up today because my mother-in-law is here watching the baby and a cousin stopped by to visit, prompting the apologies. My mother-in-law totally understands and truly does not care about how my house looks. The problem is, she remembers her house looking this way. Growing up, my house never looked this way. There are four kids in my family, my mom volunteered for everything, carted us all over creation as we all played a sport, took piano and girl scouts, and who knows what else. She kept the house pristine, the laundry done, and dinner was hot and on the table when my dad arrived home from work. There is lots of backstory to that, but the point of this is that my house growing up is the utopia I cannot reach. Obviously I am not a stay at home mom and therefore, do not have the time during the day to devote to volunteering at the kids school or doing that kind of stuff. Incidentally, I work from home and do have time to devote to the house since I don't have co-workers talking my ear off all day. Not that it helps...

The point of this post is that I have accepted these things - I have little kids and a demanding job, things just will not get done. Sometimes I will be overwhelmed by the fact and other times, I will deal with it just fine. This post is about Bento Box Lunch boxes. WTF, moms?! Do people really do this? Out of love? I can't. I just can't. I can't wrap my head around these heart shaped sandwiches and butterfly cucumber slices. Why? Do you people love making these lovely lunches? Also, do your kids eat this shit? Because mine eat like 3 things. And it doesn't matter how I dress up those veggies, they will only eat broccoli and tomatoes, so don't even bother. I tried. I bought these little sandwich and snack containers, because they were cute, but also to save on baggies. Unfortunately they require daily washing, so the kids only get to take them 2-3 times/week as the rest of the time they are sitting in the sink.

Some people think the "teat-nazis" are ruining it for all moms. I think it's the bitches posting these lunch boxes to pinterest.

Thanks for listening!
~Erin

Friendships are Amazing

One of my closest friends is pursuing a diagnosis for her youngest that may be rather serious. Or at least the name conjures up scary feelings. If she had told me this a year ago, I can picture myself with lots of "oh my gosh, are you okay, i'm so sorry" hand-wringing. But when she started telling me about it weeks ago, I was not wringing my hands. I felt bad for her, but I did not sit around cringing and fretting. I asked what specialists she was seeing, what therapies they were recommending; we talked about the county early intervention program. Instead of making her dinner, I made her a binder to use for all the paperwork coming her way.

I did not think twice about that conversation at the time, but rather was reflecting over the weekend and as our conversations replayed in my mind, I thought about how strange a place I am in now. This place of "oh okay, something is up with your kid. let's talk about all the things", not "oh no, what to do? where to go? how to deal?" Because these things just do not seem so big and hard to handle any more. The schedule juggling and finding sitters for kids to commute downtown to spend the day at Children's. The waiting for results. And the scheduling of all the appointments. All of that is stressful, sure, but not really because they are things you can do - you can see this specialist, do that therapy, and there is always something on your schedule, something you do for this awesome kid in your life. And knowing that you are doing all the things makes it easier to deal with; the unknowns, the what elses - those are the hard things.

I certainly do worry about her and ask how she is doing. But, I know, and I get it, and I can empathize. This is my life. This is her life. This is the life of a mother with a special needs kid.

While discussing the craziness of how both our kids need these services, she said to me "You would be my person to talk to through all of this, and you are going through it too, you get me. And I feel so blessed that I can go through this with you." It is sick and bizarre to think you feel glad your friend is going through this, but so awesomely amazing to know that your person totally gets this.

Thanks for listening!
~Erin

She moves! She moves!

The baby started moving herself around last night. I have not actually seen her scoot per se, but she manages to move herself decent distances to get to what she wants. I put her down on the foam mat so I could help the other girls work on homework at their table. I kept moving papers and the princess's folder away from the baby, who was trying to destroy it with her feet, when I finally realized that I had moved the same thing away from her multiple times! So, I replaced the folder with a toy and sure enough she scooted over to get the toy. Then she realized the mat was more fun.

The baby used her feet and toes to pry the sides off the mat. Then used her feet and legs to maneuver the piece so it stuck up enough for her to grab with her hand, so she could chew on the piece of the mat!!! The pictures show what I am talking about here. She went on to pry off a couple of the big squares, separating the square from the letter inside. Her determination was so strong she did not even notice her daddy coming home. Too cool!!!

Thanks for listening!
~Erin

Equilibrium Shift

Weeks ago, after our appointment with the ortho doc and hand specialist, we came home from Children's free from specialist appointments until the baby turns a year old! We did have one scheduled with an opthamologist to talk about her clogged tear ducts, but that was no big deal. After such a whirlwind pregnancy with tons of appointments and sonograms, and then a bunch of specialist appointments and getting set up with OT through the county, it seemed like the first 6 months of her life were pretty busy with doctors and such. So, having nothing on the calendar for months and months was pretty awesome.

At the opthamologist's office, I mentioned that sometimes her left eye seems crossed, but I know that is normal for babies to some extent, so I was not sure if it was a big deal or not. Turns out, her left eye is fine. Her right eye is the issue - her right eye has very restricted movement. She cannot move her right eye from side to side. The good news is in terms of eye issues, Duane Syndrome is pretty easy to deal with because there is no treatment. The baby will learn how to turn her head side to side to compensate for this issue. Most people will not even notice there is an issue. (Please note, Andy Cohen of the Real Housewives franchise has something similar and I never noticed until I read about it in his book. Which, btw, is great) There is no surgery, no patch, no glasses.

The problem - for me - is that this came out of left field. I felt like we knew what was going on with the baby. I felt like we had done the tests and the x-rays and the specialist appointments and had ruled out so many issues. I thought we knew the extent of Maggie's needs. Stupid really because how can you ever know? Especially in those first few years, when things change so rapidly. But, stupid or not, I felt in the know and I felt safe.

The reason this hit me like a ton of bricks? Duane Syndrome is caused when a specific cranial nerve does not develop. If this nerve didn't develop, what else didn't develop? What else is lurking behind the scenes? What else do we not know? This news truly was an equilibrium shift for me. I am more wary and concerned. Things I might otherwise write off (like, lack of consonant sounds, I wrote off as being due to the two older kids talking non-stop), I will not write off, I will worry about and focus on trying to identify if there is a bigger issue. Is that better? Maybe. Maybe getting speech therapy at a year is better than getting it at two years, when the problem is more obvious. Maybe not. Maybe being worried that every appointment is going to bring more shocking news is not good for our mental state. But, it is what it is. We don't know what we don't know. And eventually I will slip back into calmness (I hope). For now, I will continue to be wary and hope for the best.

And, truly, in terms of issues, this was the best. I cannot - and should not - complain because a relatively minor eye problem that requires no surgeries or anything is probably the best kind of issue to have. My issue is not with that, but with my own emotions as a result of being hit with this shocker.

Thanks for listening!
~Erin

The story of our new house

So we started looking for a new house back in May. Spent countless hours on Redfin, a couple of long days out with our realtor, saw probably 15-20 houses. It was like freaking Goldilocks - too big, too small a yard, horribly configured finished basements, too close together, too close to the main road, development missing community pool, etc. We knew the area we wanted to move to, but there are literally 20+ housing communities out this way. They are all family oriented and most of them are great, but of course having so many houses means more traffic getting to the area and then down the connector roads. Picking the perfect house was trying.

So, the perfect house found us! My mom actually found it for us, inadvertently. She was out estate-sale-ing in a neighborhood we really liked, which had only a few houses for sale and they were at the top (or possibly over the top) of our budget. She started chatting with the owners and found out that the owner's mom died and they were selling her stuff. My mom mentioned our interest in the neighborhood, the wife invited her in for a tour, and my mom left them her number. The house needed a LOT of TLC! It was a wreck inside - stuff everywhere (they were moving it out), some holes needing patching, toilet paper rolls off the wall, etc. But, a great configuration. So a couple weeks went by with no call from this couple. We continued to look at houses with our realtor. We made a list of 10 houses to see one week and then the night before we were supposed to go out with the realtor all but the last two on our list were still available. It seemed everything was going like hot cakes and we couldn't think on anything.

Finally the owner of our house called. He felt it was Divine Providence that my mom talked to him and he felt moved by the experience! He wanted us to come look at the house and let him know if we were interested. He is a newly ordained minister in an Anglican church and has been struggling with what to do with this house. He bought it, moved his mom in when she got sick, met a woman at work, got involved with a church up near work and this woman's house, moved in with and married her, and then his mom died a few years ago. He has been coming down weekly to cut the grass and whatnot, but does not live here. He felt it was time to pass this great house on to a family that would care for it and really take advantage of the wonderful neighborhood. Through a series of meetings with the owner, we worked out the price and the details. Our realtor represented us, but guided the owner through the process so he would not have to pay realtor fees to someone else. He wanted us to have the house. The night he and his wife accepted our offer, they had us over to talk about it, and his wife was crying - tears of JOY! - for us, for our family, and for her family. They could leave this albatross behind and move on with their life, and we could have a wonderful house and yard for ours.

Divine Providence, indeed.

Thanks for listening!
~Erin

Specialists and Doctors, oh my!

When the baby was about a month old, we started up with the specialist appointments. We are lucky enough to live within a relatively short driving distance from Children's National Medical Center in DC. When the radiologist first discovered there was an issue, we were sent to CNMC and saw the top geneticist. Thankfully, we were able to get in to see him again so soon after her birth. What amazes me the most about Children's is how accommodating they are. The drive is maybe an hour to an hour and a half from our house, yet they always try and cram as much in as they can so you do not feel like you wasted the day!

In February, we went for the day - we saw the geneticist, the orthopedic doctor, and had X-Rays and bloodwork done. The ortho doc indicated we should come back in about 6 months to see her, but that the baby's primary specialist will be the Hand Specialist (who, thankfully, works closer to our house!!!). We went back for a visit to the geneticist around 3 months and coincidentally happened to be there on a Friday, which is the day the neuro developmental specialist is on a rotation with the geneticist, so we got a two for one in that office (except not really because they billed us for the co-pay after the visit). What they did not bill us for was the time the geneticist took with not only the baby, but with all of the kids. He did a thorough exam of the baby, but also talked to and looked at the other kids. He asked about the munchkin's "short stature" and asked to be copied on her CNMC reports. He told us to bring the other kids to all the visits. He just genuinely cares. And that is freaking amazing!!!

Fast forward another few months and we are back - around 6 months. The geneticist wants us to get a sonogram of her sacral dimple, but says it can wait a few weeks for when we come in for the ortho appointment - unfortunately, that time we could not do it all at once. We saw the development doc again and she had presents for the older girls :) The bloodwork came back normal, there are no "puffs" around her chormosomes suggesting Roberts Syndrome (this was a bit of a stretch as they only "symptom" she has is the phocomelia). In 5 or 10 years genetic testing will become more advanced and we will have more bloodwork and tests. But, for now, things are what they are and we do not have a label or a roadmap. We will just let the baby develop, work with the OTs and see what services she requires. In the meantime, there is no need for these frequent visits, so we are done with genetics until her first birthday!

A few weeks later we were back for the ortho appointment and to get updated x-rays. This one was tough - getting up early with all the kids in tow, driving downtown in rushour traffic, which of course included multiple accidents. The ortho doc came in, looked over the baby for all of 60 seconds, said "I still stand by what I said before, the hand specialist will be her primary specialist. No need for me to get X-rays". I thought my head might have exploded because hello, I did not take the morning off work to do this!!! Thankfully, she quickly followed up with, "it just so happens today is the day the hand specialist works from the DC location, let me track down her assistant." From there, it was a bit of a whirlwind. I ended up taking the whole day off, but once again, it was so worth it because CNMC is so great!!!

We got x-rays, we got a sonogram of the sacral dimple, we got more bloodwork done (for a deeper chromosomal analysis), the Hand Specialist fit us in for a visit with her, and we got a prescription for OT outside of the county provided services with a list of recommendations. And, we don't have to go back until the baby is about a year old! It was more than worth the trip. And the older kids were rewarded for their awesomeness by the staff of young adults that came into each waiting room with a cart full of games, arts and crafts, and coloring stuff. The girls played Candy Land, made bracelets, and colored pictures. They walk away with stickers and see the whole experience as fun.

I cannot say enough how blessed I feel to be a part of the CNMC family. These doctors, these administrators, they care - really, truly, care about the kids, about your role as a parent, about their job. It is a wonderful thing to feel so cared for when you are dealing with the unknowns of a special needs child!

Thanks for listening!
~Erin

Whomp! No posts since June - WTH?!

Sorry readers...let me prepare some updates for you!

Thanks for listening!
~Erin

five. 5! FIVE!!!!!

My "baby", my first little girl is turning 5. Everything about this monumental occasion blows me away because it seems so huge. The truth is, hanging out with her is like hanging out with a 10 (sometimes even 18) year old, but I know she is still little. Except now she is not little anymore - she is five and she will go to school full time and be a kid and it is a big freaking deal!

So, to my five year old...
I love you. I cannot figure out how we were so blessed to get such good kids, but I am sure not going to question that either! I think a big part of why your younger sister is so good is because of you. You are so sweet and loving, it is hard to be anything other than filled with joy in your presence. You have the sweetest smile that comes on in a little wave - starting with a small curve of your mouth and then working its way through you until your teeth show and your eyes light up with happiness. You love to make people laugh and are getting very good at remembering jokes. This is perfect actually, because your daddy loves silly kid-level jokes!

You are mature, so mature for your age. It is beautiful and heartbreaking really. I worry that your maturity and intuitiveness combined with your sensitivity will make you too vulnerable later in life. It is also hard to watch you try and find yourself - you want to be silly to get people to laugh (like the munchkin does), but that child-like silliness does not come naturally to you. When daddy was painting recently, he pretended to paint you and the munchkin. She laughed and screamed "no", but you looked at me and said "he is so weird, right?"

For Christmas, Grammy took you to get a haircut and you got this short bob that came down longer around your face and it was amazing how that haircut transformed you from a little kid to a big kid! Your feet are growing, your body is growing, and you trip over things and run into things all the time. This is tough because you are so sensitive and it makes you cry every time you get a bump or a scrape. That does not stop you from running around and playing hard - and you have plenty of bumps and bruises to show! Your knees are almost always scabbed over and we love it because it means you are playing hard and getting dirty.

Your vocabulary is as strong as ever and is still a constant amazement. You are phenomenally well spoken and now you are moving into the reading stage. You want to write all the time and are constantly asking how to spell things. We are doing word flash cards during meal times and you cannot get enough. We have to force you to take breaks and eat or else you would go all day. Words are not your only interest - you also love the addition and subtraction flashcards (very exciting to my math-loving self!). We have been collecting coloring and activity books for years and you just recently discovered how fun the activities are! You are a master of identifying the "different" picture, love playing tic-tac-toe, and are really getting into word searches, fill in the blank, and other word puzzles.

Personality-wise, you are frighteningly similar to me. You are super organized, you get up early and wake up ready to face the day (as opposed to daddy and the munchkin, who take a while to hit their stride). You have a love for learning and can sit quietly and color for hours. Once you learn to read, I imagine we will be forcing you to close the book and go to sleep (something Grammy and Pop-Pop had to do for me!). You are a bit shy sometimes, something I seriously struggled with, but not the point where I worry. You are intuitive, inquisitive, and sensitive. It is awesome how similar you are too me in personality and I get a kick out of looking at you and thinking "where did you come from?!" only to realize how much you sound like me!

I am looking forward to this next phase, to seeing you go off to school and learn and grow. You make friends so easily and are such a sweet girl, I think you will do well in Kindergarten. I cannot wait for you to master reading and start devouring books. You cannot wait to lose a tooth! I imagine you have some other things you are looking forward to as well, but that is the one most-voiced.

Happy Birthday, Princess!

Thanks for listening!
~Erin

Bummed

This whole special needs thing is a real roller coaster. The highest of highs definitely, but also the dips (and I will not say the lowest of lows because honestly, there have not been any super low points). I look at my four month old baby rolling over front to back and now back to front, and I see where she is right on track developmentally and think "how amazing! she has these short arms, this lack of muscle, and yet is right on track". Most of the time I do not even think of her differences because they play such a minor role in her life. It is easy to look at how she is doing and feel elated.

But then there are the other random things. Like today, I saw a picture online - a common phrase - "who has two thumbs and..." and it jolts you to think about your baby, who doesn't have two thumbs. Bummer.

It is not the saying that gets me - that is a silly saying anyway - or the fact that she does not have thumbs - she has 5 fingers she can use. It is more just that punch in the gut reminding me of the fact that she is different and she will have some tough times.

Thanks for listening!
~Erin

On a lighter note

This conversation between the munchkin and the princess happened last night:

Princess does you likes lotion?
(she says no)
He don't wants some

Her misunderstanding of pronouns is something I have been working on, but it is a habit she is struggling to break. I really don't care, I absolutely adore her horrible grammar.

Thanks for listening!
~Erin

Nigthmares

I had a nightmare last night. I am always a little afraid of the dark, shadows in the closet, the shower curtain in the dark bathroom - but I can attribute all of that to watching Criminal Minds right before bed time! Last night was different, it was a real nightmare, and woke me up panting, shaking, and with a racing heart.

In my dream, I dropped my older kids off a mall daycare center sponsored by Nintendo Wii and then left them even though I had a bad feeling about the place. I was in an unfamiliar city - I think NYC - and got lost trying to get back to them. While running around, I got pulled into a work meeting and sat there for a while before remembering I was trying to get the kids, so I ran out and got lost some more trying to find this damn mall. I eventually found the mall and this guy stopped me to tell me my kids had started crying immediately after I left and how could I do that? I asked him to hold on while I went to get the kids, but I was too late. The place was dark. I could not find the stairs. So I was jumping around the mall screaming their names. And then I woke up and could not close my eyes for what seemed like ages.

I can rationalize the dream to understand where these scenarios came from - I worry about being a workaholic, I frequently find myself running late to the last minute, some lady said something to me about parenting at church - but the thing that is bothering me is the nightmare itself. No longer am I afraid of silly childish fears like the boogeyman under my bed or monsters in the closet. Now, my nightmares are the things of reality - am I protecting my kids? Do I make the right decisions? Can I keep them safe? I will try. I will do everything I can to be the best mother and caregiver they deserve. But, even the best parents lose children. Even the most vigilant mothers do not see the signs of abuse on their daughters. The most loving parents forget about the change of schedule and accidentally leave their child in the car. And that - that fear of what I do not know or what I can not stop - is what hits me like a lightening bolt.

The nightmare is over. My girls were safe and snuggly and all smiles this morning. They are happily off at daycare playing with friends and adoring their teachers. But me? I am here moving through the day, trying to shake off the residual fear. I want to live in each day, cherishing every moment. But sometimes, I want to fast forward 20 years and see my kids are all still here, still healthy, still happy.

Thanks for listening!
~Erin

Blah

One of the amazing things about having a child with differences is the community of support available. The hand specialist gave us a sheet with about 10 websites listed that she recommended we check out for support. All of these websites have community support pages. And the community support pages link to other pages and so on and so on. My facebook news feed has all the regular news of my friends and people I went to high school with along with inspirational messages and requests for prayers. It is fantastic!

One of these groups is a very private yahoo group limited to parents of kids with limb differences or kids with limb differences. I love this group. But, I need to set up a filter in gmail to put all these in a folder because sometimes the posts get to be a little much filling up my inbox (okay, that's done)! One of the posts recently was about staring. A new mom wrote in how she feels the need to "explain" her child to everyone she runs into on the street, which is ridiculous and also awkward for everyone. I do not really relate to this as I honestly forget sometimes that my baby even has a limb difference and then remember when people give me that "aww, poor thing, cute baby" smile/grimace thing. But then I went to a friend's house for her child's birthday party and none of the adults asked (one kid did and we explained it very quickly). After leaving the party, I felt a little strange because no one had asked. It was obvious as the baby was wearing short sleeves. Maybe no one asked because they did not want to be rude, maybe because they already knew everything from my friend, but whatever the reason I still felt a little awkward. So now I understand this new mom's desire to explain. If you just put it out there, you do not have to wonder what people think or know. I will not start explaining everywhere I go, but I know I will think about it more than I did up until now. I am feeling apprehensive about taking the baby to work next week because I do not know how many people already know (some I've told, some I'm sure heard through the grapevine). I do not know if I will be faced with a ton of questions or with no questions and I do not know which I prefer.

All this to say, my biggest issue with this aspect of my life is the emotional one. I hope I am emotionally strong enough to handle everything that comes our way, I hope I am emotionally tough enough to help my baby handle everything, but I just do not know how it will go. And those worries are the things that keep me up at night.

Thanks for listening!
~Erin

FUZZ!

The munchkin walked into our room, saw her blanket on the floor, and said "Daddy, there is fuzz on my blanket! Can you please throw it away?" It was a split second moment, but for my husband and I, it was a rush of memories. From the time she was rolling over until about 2 years old, the munchkin was terrified of fuzz. She would point at carpet fuzz or stuffed animal fuzz and screech until someone - usually the princess - swooped in and threw it away. I have no idea what sparked this incredible fear, but she was terrified. If you came near her with fuzz she would scream and cry as if it were a spider (for me at least - maybe not everyone hates them the way I do!). I completely forgot about this huge phase of our lives until that moment this weekend. I now have a mental note to make sure I include this factoid in her baby book, something I forgot to do when filling it out on her third birthday (the second child gets the shaft around here - I just filled out her "baby" book!).

Strange fear. I wonder if she will always hate fuzz just a little bit and for no particular reason!

Thanks for listening!
~Erin

Impressive

I feel like my last post totally ragged on my four year old for being overweight, which was totally not the point. The point was, I have this issue that I have been carrying around forever and am terrified of imparting on my kids. Lately the princess has been blowing my mind with her vocabulary (once again!). She ran into the kitchen the other day and said "mom, I am going to show you something that will really impress you" - okay, that sentence alone impressed me! Then the next day, I brushed her hair out of her face and she said, "It always falls back down, so I prefer if you tuck it behind my ear". Seriously, "prefer"?!

And then there is the talking with her hands. Not in the toddler way of flapping hands about as she tries to gather her thoughts, but more in a perfect imitation of the way I use my hands to exaggerate a point. It is so adorably distracting to watch her tell a story, using her hands to help you visualize or understand the importance of what she is saying.

And then the questions. She still has "why" as her favorite word. And sometimes I feel like it would be easier to stand in front of a firing squad than handle the question bullets she shoots at me in rapid succession. But, I cannot complain because she listens. She rarely asks the same "why" question again as she remembers the answer. Her questions follow a train of thought until she feels satisfied. We once spent 30 minutes discussing lighthouses before she moved on to dinosaurs. This morning on the way to daycare we talked about the Earth's atmosphere and she was able to ask me questions referencing other things we have talked about in space, things that happened on Mickey Mouse Clubhouse Space episode, and things in the Dr Suess Space book. It was amazing to see her pulling from her own knowledge base to ask deeper questions. After we got through the atmosphere, we talked about bird migration and then where souls go after death/who goes to Hell. Of course, by the time I dropped them off - all before I had my morning cup of coffee - I was mentally exhausted, but also super thrilled with my little smarty-pants :)

Thanks for listening!
~Erin

Self Esteem Issues

We talked about being fat, getting fat, getting skinny, being skinny, etc a LOT in my house growing up. I can remember my mom going on tons of fad diets, putting us on diets, rewarding skinny and being hurtful about being fat. I never want to do that to my children. I thought it would be easier, though, because I am so adamantly against "fat" and "skinny" talk. Yet, I am finding it is hard. Very hard.

My four year old has a little belly. She is by no means a chubby kid, but I see her not flat stomach and worry that she is overweight. I look at my best friend's kid, who is the same age, and she is so skinny, which makes me worry about my daughter. I have to constantly remind myself that my friend's daughter had to see a nutrionist to try and gain weight. Every kid is different. My four year old does not need to be skinny! She is freaking four years old!!! At her 3 y.o appointment the dr told us to switch to 2% milk because her BMI was a little high and I totally freaked out. At her 4 y.o. appointment she was fine. But, still, I worry. I know we don't eat as healthy as we should (obviously, my husband and I are both overweight), but we do try to get the kids balanced meals. Lately, food has become an issue with the princess. She asks for more food, but when offered only the "healthy" options, declares she is too full and so we let her get down from the table being "full". If all we have is frozen pizza for dinner and she asks for a 3rd slice, we say, "why don't you wait a bit and see if you are still hungry? If you eat that slice, you might get too full and then have a stomach ache". But that isn't really why I am saying it, in my head I am thinking "3 slices is way too much! You'll get fat!!!". We have succeeded in avoiding using the words "fat" and "skinny" to talk about bodies, which is a huge thing for me. But, I still worry too much in my head.

A few days ago a friend of mine posted about her son asking for a snack and then consuming 4 bowls of cereal. My first thought was "4 bowls?! holy cow! that's amazing!". But, then I started thinking, what if it was my kid? Would I let her have 4 bowls? Definitely not. Because that would be too much food. But is it really? If the kid is hungry, let them eat, right? I don't know. I also wonder if my kid was a boy, would I even worry this much? I probably would not. And that's awful.

I am working on being healthier. I am 20 pounds lighter than I was a year ago when I got pregnant. We bought a treadmill a couple weeks ago and I am doing the couch-to-5k program. I feel better about exercise. I feel good about talking to the kids about exercise. I am glad to have my younger sister as a role model for healthy living (she exercises and eats healthy, but also enjoys ice cream almost daily - she has good balance in her life and never stresses these things in terms of body image). So, for me, in my head, I am working on my issues. I just wish I could figure out how to change them faster for my kids sake.

Thanks for listening!
~Erin

Toddler Speak

In other speaking news, the munchkin says "don't" instead of "doesn't" and always adds an 's' to her verbs. All day long we are treated to
"it don't fits here"
"it don't works"
"it don't spills"

And I love it, I want to capture it on film, and roll around in the adorable-ness of her cuteness. As much as I pushed the princess to talk clearly and move past the toddler-speak, I cling to these cute little phrases the munchkin says.

Other things she say that I adore include -
"hook" for hood
"jammits" for jammies
"p-jammits" for pajamas

And the way she says the princess's name - it is a short name but the munchkin turns it into a mouthful.

Thanks for listening!
~Erin

Growing up!

A couple weeks ago, the princess said something to me that included the word "regular". And then she looked over and said, "I have trouble saying that word. Can you tell me how to say it?" And I think a little piece of my heart broke.

Since she was young, her vocabulary has been phenomenal. At 18 months she could talk to my mom - who is hard of hearing - on the phone and my mom could understand most of what she said! She has been talking so well, and so clearly, for so long that it rarely phases me anymore. I used to marvel at how well she spoke. But, this one word - regular - was always a challenge. She says "reg-le-are". I have never worked to correct it because it was really the only semblance of "baby-speak" she had. I kind of liked that she still had this young trait! But, now she recognizes that she says it incorrectly. That fact alone blows my mind. And ever since we worked on it - "reg - U - lar" - she has been working hard to say it correctly and to correct herself when she slips back to "regleare". I am amazed at how self aware the princess is. I just hope she always recognizes that as a good thing and does not let her overly self-critical mindset get in her way!

Thanks for listening!
~Erin

Postpartum Needs

I have (thankfully) not had too many postpartum emotional meltdowns, but tonight I came close! Luckily, my husband was on the way home and I could let him know - via text - how I was feeling and what I needed. Thank goodness for text messages, otherwise I would have had to risk being set off by something he said or didn't say! The last couple days I had some stressful personal stuff going on, when combined with the end of the week pent up feelings, lack of sleep, and a three-year-old who has taken to waking us between baby feedings at night made for a tough day for me! So here is what I learned and hope to remember for future rough days: 1. Fresh air is critical. Get up and go for a walk with the kids or at least stand on the deck with a cup of coffee. 2. A shower, especially when the husband is home or the kids are napping, can erase all feelings. If there is time to shave and lotion, do so. It is like wiping the emotional slate clean. 3. If there is no time or energy to tackle the cleaning, run the vacuum. Having a clean surface will suffice. If there is time and energy, run a Clorox wipe over the bathroom counters and toilets. Takes 10 minutes!

How are we doing?

This is the question I get asked the most. We are doing fine. Great, actually! But I'm not sure everyone buys that - and based on the number of compliments I get about how "great" I look, I don't think the reason is because I look disheveled. I guess people expect we would be struggling or it would be difficult to process. The thing is, for me, there is very little to process at this point. We knew her arms would be short, we knew she maybe had some fingers. Tests showed her organs to be good and all her other bones to be growing fine. And then Maggie arrived, perfectly healthy, with five working fingers. We still have all the same questions we had before - what caused this? What other issues might she have? What can we do to help. But, now, instead of lingering questions, we have doctors appointments and tests to help us find the answers. As we get some things answered or at least ruled out, we will have more to process and as Maggie grows and the effects of her limb reduction become apparent, we will have hard times. 

I think that there were people in our life hoping and praying that she would miraculously grow arms. Right up until the day she was born. And now that she is here, and they can see she does not have arms, it is hard for them to face that. There is a grieving process associated with the loss of that hope. Grieving that loss does not diminish in any way how much they love Maggie and recognize what a sweet baby girl she is. So, I hope our friends and family who were wishing for the miracle that did not happen, do grieve and do not feel guilty for doing so.

That being said, I am not in the same place. I never prayed for a miracle or that Maggie would grow arms. I do not have any regrets about that - when we first found out at our 20-week ultrasound, I barely prayed at all. I just got lost in thoughts. It was not that I was mad and NOT praying, I just found it hard to focus. I was shell shocked and not sure what to think about, so I just generally prayed and thought about everything that was going on and figured that I would eventually be able to reorganize thoughts into directed prayers. After the tests and the visits to Children's, it was fact that she was missing bones and science that the bones would not grow. So, to me, praying for that miracle seemed pointless; I prayed for an otherwise healthy baby. Also, based on the outpouring of love and support from family and friends, and the amazing resources and stories we read on the internet, I really started to see what a wonderful gift we were given. If I could have gone back in time and had a perfectly normal sonogram, I would have chosen that path. But, once we were on this one, I never wanted to turn around and go back. 

For me, my prayers were answered. And I hope that my logical, somewhat unemotional, approach to life is not hurtful or insensitive to those I love. 

Thanks for listening!
~Erin

Maggie's First Visit to Children's.

I cannot say enough good things about Children's National Medical Center.The personnel - from the doctors to the administration - are wonderful. I called the genetic counselor to set up an appointment not long after we got home from the hospital. She asked all about Maggie and how we were doing, then asked when WE wanted to come in for a visit and said she would get back to us. When she did, it was to ask about a few dates, so I picked one and then she said she would get back to me to confirm. She called back just a few days later to say that not only did she get us an appointment with the Geneticist, but also had coordinated with the Orthopedic doctor so that we could "head up" after we were done in Genetics. Both appointments were going to be at the DC location so that they would have access to the labs and x-ray machines if they wanted to do any tests that day. She apologized that we would have to drive in to DC, but thought that was the best option so that we could get everything done at once. The whole experience was mind-blowingly awesome! A hospital apologizing for my inconvenience! Someone willing to make all the calls and set up appointments around my schedule! What more could a busy parent want?! It is awesome that we can rely on the genetic counselor to help us coordinate appointments and to work with our insurance to get pre-authorization for things. Plus, everyone gives us their card and encourages us to call with any questions. They even encourage us to email or call anytime - they would rather we ask the question than to work ourselves into a frenzy or google ourselves into anxiety! We are so blessed to have such great doctors essentially right down the street!!!

So, last week we met with the Geneticist (Dr Rosenbaum) and the Orthopedic Doctor (Dr Tosi) at Children's. The genetic counselor for Dr Rosenbaum set everything up for us so that we were able to see Dr Rosenbaum and then go right up to Ortho. Both doctors agree that basically Maggie appears to be a perfectly healthy baby with "limb reduction". Dr Rosenbaum wants to do chromosome testing to see if she has SC-phocomelia, which is on the Roberts Syndrome spectrum. The spectrum is huge, so he cautioned us not to get too caught up in the language of the syndrome because even the doctors have to be careful not to generalize. For instance, Maggie has a stork bite on her nose and also her eyelids and the back of her head, which can be associated with Roberts. But she does not have a cleft palate and appears cognitively on point (she can focus on and follow keys when waved in her face). The bottom line with Genetics is - there is not much for them to do, but they do want to do the Chromosome testing and see her back in 6-8 weeks just to "chip away at the list of possibilities". The geneticist believes her limb reduction was caused by two vascular events, where the blood vessels feeding her arms were pinched or somehow affected during the critical development time period.

After genetics, we went up to Ortho, where they did x-rays of her spine, hips, arms, and hands. Her hips and spine are great. Her arms have the humerus (top half) bone in each arm, some of the bones that make up the palm, and fingers. Each hand is connected at a joint, which is good. The ortho doctor wants to see us back in 6 months for an updated x-ray, but does not see much involvement for ortho. She recommended we see a hand specialist, who thankfully is based out of fairfax (much closer to our house!). But, yesterday, there was a hand specialist at the DC location, who came in to check Maggie out. She agreed the hand doctor would probably be Maggie's primary "specialist" and gave us a hand out with some great websites to check out for resources and community support. 

Maggie can just about reach her mouth with her hands now, so her biggest challenge will be toileting. The hand specialist will likely recommend physical therapy and occupational therapy. According to the Geneticist, there is a great children's therapy center just minutes away from us, which is great too! Through PT and OT, hopefully she will be able to develop her hand/finger muscles to get more use of them. Her right hand can grasp pretty well, but her left arm is significantly more under-developed. We will see what kind of program we get on with PT and then hopefully after a few months will be able to project more of the future. The hand specialist may recommend surgery to "turn" her hands - they are currently like club-hands - pointed backwards. They would also discuss prosthetic options and would be the place to get fitted for prosthesis if we choose that route. At this point, that is very far into the future as we want to develop what she has. Plus, we don't want her to become dependent on something like that when kids born with limb reduction seem to have much success with using what God gave them. 

Thanks for listening!
~Erin

3 weeks old!

I cannot believe our little one has been here for three weeks already. Time flies for sure, but also we have done a lot in these last few weeks. In the hospital, I realized we would probably have lots of appointments and such for her, so I went ahead and made a bunch for me - the dentist, dermatologist - and the kids - well visits and the dentist. We been knocking them out like crazy! I feel like every week my Mint Weekly Summary shows the most used category as "Health/Doctor". Of course, baby Margaret has had her fair share too. The 3-day visit, the follow up for jaundice, the weight checks, and our first set of appointments at Children's.

Our baby is healthy. Very healthy! She spent her first night home eating and pooping every 90 minutes and the jaundice was gone the next day. Everyone who checks her out declares her fine. Her heart, lungs, kidneys, muscles, everything looks good. Bottom line - she is a healthy baby with isolated phocomelia. That is exactly what we were prepared for and everything I prayed and hoped we would get!

Thanks for listening!
~Erin

The "end" of the race

In so many ways, getting to the delivery seemed like a race we were trying to finish. Once we had the baby we would know how healthy her organs were, we would know what her arms look like, we would know what to do, etc. The truth is, in most respects, her birth is the beginning. Now that she is here and we know what she looks like, we know what she looks like - that is it! The point is, in so many ways, we know nothing more than we did two weeks ago! Obviously once we get scheduled with the Genetics and Orthopedics teams at Children's, we will have some more information and will know more than we do today. I talked to the Genetics counselor yesterday and she is going to call Orthopedics, get dates for their availability and give me a call back today to confirm everything.

I cannot even express how amazing I think Children's National Medical Center is. To have someone making all these calls and coordinating the appointments to ensure both doctors (and any others they may suggest we see) know who we are, why we are being seen, and what we need is amazing. Not only do I not have to be responsible for all of those calls, etc, but I also know that it is well coordinated. We will not arrive at the doctor wondering if they have seen the results of a certain test. Everything is kept on record and all the doctors review these records before seeing you, they know what is going on when they walk in the room. And the "charts" are not random notes that may/may not make sense to another doctor. Every visit results in a 3-5 page report sent to all relevant doctors, including the pediatrician, and the parent. If we were to move or switch doctors, I would have 10 pages of information to take on the munchkin's "short stature" from her various endocrinology visits.

Right now, we know she is gaining weight like a champ - thanks to my muscle milk! Her heart and lungs sound good. She looks perfect, all her other bone structures look good. Both arms are short, approximately half the length they should be, her right arm has three fingers, and her left has two fingers. Once we get the x-rays done, we will have a better idea of her bone structure, things like whether or not she will have a palm or just fingers, how much bend she will have, etc. I am certainly excited to move forward with the testing so we know what services she needs. But, right now, I am just thankful she is as healthy as we hoped she would be.

Thanks for listening!
~Erin

She's Here!

When I was pregnant with my other two kids, I could not wait to hit the end of the pregnancy. I was SO ready! With the munchkin, I felt like I was dragging a bowling ball around my crotch for about six weeks before she came. This time, however, I was not ready at all! In terms of preparation, there was little for me to do aside from getting organized and washing the clothes, plus with all the doctor appointments and unknowns, it was easy to push the preparation off for a while. Then, we hit the holiday season and with two little kids, shopping, pageants, and visiting family, time seemed to fly by. Thankfully, I was not "ready" to kick the baby out until just a week or two before our due date. We wanted to her to develop as much as possible in utero even more than the others!

My OB scheduled our induction for five days before the due date, and thankfully my cervix progressed enough on its own that we did not have to go in the night before for the cervadil. We arrived at 7:30, dilated to about 3cm, and by 8:30 I was getting the pitocin. Around 12:30, I had only made it to 4cm, but the baby was down, so the OB broke my water. Over the next couple hours, I layed on each side, got the epidural, and barely made any progress. I could not progess past 5cm. We were having some issues with the baby's heartbeat, where we were having "lates" instead of "earlies" - basically the heartbeat should drop during contractions (early), but our baby's heartbeat was dropping after contractions (late). So, the OB decided to put a couple of monitors on the baby directly, one to measure her heartbeat since she was not staying in place for the monitor to keep good track of the heartbeat and a second to measure the strength of the contractions. Turns out, the baby was bouncing up and down and would not really lock into place. So, they pumped my uterus full of fluid to "float" the baby back up hoping she would re-engage. The nurse left saying she would give it about 30 minutes before checking me again so we wouldn't be disappointed if I was still at 5cm.

Not 10 minutes later, I looked at my husband and said "I think the nurse should check again", so he ran out to get the nurse. She lifted the blanket, took one look, and said, "no need to check, I can see your baby's head!" Then, she called another nurse to help her prep the room, the doctor to rush over, and the neonatologist. When the OB came in, she said she wanted to wait for neonatology, but that the baby was coming quick so I was not allowed to sneeze, cough, or laugh! As soon as neonatology arrived, I gave it one good push, and voila! Baby!!!

Margaret ("Maggie") Catherine

Born January 17, 2012 at 5:44pm

6 pounds 15.5 ounces

19 inches

Thanks for listening!
~Erin