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ch-ch-ch-ch-changes

10 Mar

I have changed platforms!

Make sure to go to:

http://www.girlbytheseashore.com and change your bookmarks and email subscriptions!

Thanks for reading!

Heather

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Valentines Day

14 Feb

For Valentines Day, we get sunshine…and love it.

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Twos

6 Feb

We are in that stage now…the twos.

I should probably be more scared of them.  We’ve already had some funny (if you want to call them that) “twos” moments with the boys.

But the number 2 now has some special meaning in my life.

I have 2 boys (goes without saying).

They were born on 2.2.12 at 12:12 am, 20 seconds apart. That day is also my maternal grandmother’s birthday, the woman from whom I get my middle name, who also had twins, one of whom is my mother.

So, even though the birth of my twins wasn’t exactly what I was hoping for, we feel pretty certain that everything happened exactly as it should have.

As the 2s are now here for our 2, we are amazed at what a fantastic and flabbergasting age this is. Their memories are incredible. Their vocabularies are growing everyday. They ask us what “dis” is so they can learn the word for it.  They are funny. They can answer questions and understand everything (more than we would like sometimes).  Win said, “bless you, mommy” after I sneezed the other day ?! They will go from crying because they lost a toy to the sweetest bunch of cuddly goodness to saying a word over and over until we understand it to dancing and spinning in circles at the drop of a hat.

To us, they are the best parts of still needing us and wanting to be picked up all the time and saying “I do it” to most everything.

Most recently the number 2 has meant something much more.

Because in the 2nd week of his 22nd month*, my boy, who was born on 2.2.12 and is 20 seconds older than his brother, came back to me.

Our boy came back to us.

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Holt had spent the last few months frustrated for not only not being able to communicate effectively (he has a real NEED to be not just heard, but understood), but also for not being able to be as free with his movement as he once had been.  He was frustrated and would cry and whine a lot.  He had not always been like that, but we thought it was due to early onset terrible terrific twos (as my mom calls them).  We thought it was going to be a phase.  But as soon as he had that last treatment in November, the laughing, joking, smart, running boy came back.  He was funny again.  He was sweet again.  His fuse was much longer.  He was happy.

Even though the GBS wasn’t finished with him and he had a relapse in January, I can see Holt coming back faster this time.

I think this year is going to be his year (not the best of his life…I’d like him to remember that year).  I think this is going to be the year the I remember the most.  The year that I saw Holt struggle.  The year I saw us grow as a family.  The year I saw Win become a brother by looking out for Holt, almost care-taking for him – being upset when Holt was upset – giving Holt a toy when he was upset – stopping and waiting for Holt to catch up while we’re on a walk – really showing love in ways that we didn’t know he was capable of.

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Two.  Who knew that 2 could bring such change?**

Who knew that 2 could bring such good?

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*The only reason I know that is because I get those weekly babycenter emails.  I, seriously, wasn’t keeping an eye on the exact week and month.  Who has time for that?

**Anyone who is already a parent of more than one child is laughing at that statement right now.

Snow!

31 Jan

You may laugh all you want, but when it snows here, it’s a big deal.  All it takes is an inch of ice and then a couple inches of snow and we are housebound for days (3 and counting).  And even though it takes an hour to dress both boys for the snow (and they only spend about 20 minutes outside), it is completely worth it.

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I wouldn’t say the boys loved the snow, but they were definitely interested and liked it.

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I really enjoyed having the appropriate occasion to wear my red boots I got for Christmas.  I have worn them quite a bit since Christmas, but this was the first time that actually warranted the wear.

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And of course, no snow day is complete until you’ve had hot chocolate.
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that time I became an over-sharer

27 Jan

Ya know that moment when you put yourself out there and you are immediately grateful for getting it off your chest and simultaneously regret it because you’ve brought attention to yourself?

Yeah, me to.  I just had one of those on Friday.

I wrote about my son’s current (hopefully) temporary condition.  Then I shared it on facebook.  Then I might have regretted it a bit.  All of a sudden I felt very exposed.  And like I had exposed my child.  In general, I’m not a sharer in person.  I have a hard time talking about things that are meaningful and difficult.  I like to squash everything down and pretend it doesn’t exist.  I told a friend recently that I think that if I don’t talk about something, don’t put it into words, then it won’t be true and it will go away.

That’s obviously not true.

Luckily everyone was supportive and sent sweet notes to me (I shouldn’t have been surprised…my friends and family are awesome).  This is just a healthy reminder for me that I am not an island (right Husband?), and that it’s ok to confide in people (even if the actual definition of confide doesn’t necessarily mean to write it all down and post it on the internet).  In some ways it is like a certain weight is lifted off my shoulders (so cliche).  Another way to say that is what Husband says – problems can get really big in your head, but once you put words to the thoughts in your head and express your concerns the problems don’t seem so big anymore.  They don’t seem insurmountable.  They are handle-able (definitely a word).

11199630656_a72af6d39d_bweight on his shoulders (how cliche can I get?)

I speak in plural

24 Jan

That’s what I’ve had to say quite a bit the last few months to doctors and specialists.  I was taking Holt, by himself, to doctor’s appointment after doctor’s appointment.  Every time I would start to explain something, I would always say “they” instead of “he”.  I had to make sure everybody knew that I wasn’t some crazy person who thought her child was actually more than one child; or that I just randomly speak in the plural.  I had to explain that he was a twin…that we had someone to compare him to.

“He has an identical twin, so I speak in plural”.

Back in July, Husband and I started noticing something funny about Holt.  He started falling.  Not tripping, necessarily, but he would be walking and it looked like his legs would just buckle underneath him.  At first, I thought he was just falling on purpose so I would pick him up.  The boys had just started walking in February, so they were still pretty unsteady.  Win had always been a little further along on the physical development road than Holt, so I just thought it was that.

Eventually, it happened enough that we called the doctor.  I was hoping it was an ear infection, just a balance issue.  Like every other time I thought they (see there it is, that plural speak) had ear infections and was wrong, I was wrong this time too.  His pediatrician couldn’t find anything wrong.  She sent him for X-rays of his legs and blood work.  It all came back normal.  She thought it might be a virus; certain viruses can sometimes cause muscle inflammation and weakness, and that’s probably what it was.

So we waited.

In the meantime, he was getting worse.  He didn’t want to stand up and walk around.  When he did stand up he put his hands on his knees to help push himself up, like an old person (or me, sometimes).  If he was sitting still, he seemed content just playing like that.

It seemed to be worse in the morning, after he woke up, and would get better during the day.  So by the afternoon, he looked different, better somehow.

One morning he didn’t have enough strength to get his sippy cup to his mouth.  Whatever this was was now affecting his arms.

I called the doctor again that morning, but dropped both the boys off at daycare and headed to work.  I think I thought that if I continued on like everything was normal…everything would be just that, normal.

It was a Friday.  I had been at work about an hour and I got a call from the nurse at our pediatrician’s office.  She said that they had called the pediatric neurologist two hours away and that she wanted to see Holt immediately.  I was an hour away from Holt and, at that time, I was the only one that had car seats, so we were really three hours away from this neurologist.  So I left work and drove to get him.  On the way there, the pediatrician’s office called back and, while trying really hard not to alarm me, told me that instead of driving him the two hours myself, to take him to the local emergency room so that they could evaluate him and decide if he needed to be transported or not.

Transported.  My almost 18 month old might need to be med-evac-ed?

When I picked him up Holt had slumped down in a chair while eating lunch and was crying because he couldn’t get himself back up again.  I was so terrified.  We took him to the local ER and after a while of having to convince the ER doctor that he wasn’t “fine”, we were eventually cleared to drive him ourselves to the neurologist.

The neurologist still thought nothing was seriously wrong, so she sent us home with instructions to increase his dose of ibuprofen and call her the next day.

So we did.

Everything in our hearts wanted him to be better the next day…but he wasn’t.  After a couple days and a few doses of steroids, Holt still wasn’t getting better.  The neurologist put him in the hospital.

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(Isn’t he just the cutest (: )

After a lot of scary tests (MRIs, CT scans, spinal taps) it was confirmed that Holt had Guillian-Barre Syndrome.  This is a super rare syndrome (like 1:100,000) that is even rarer in kids Holt’s age (18 months at the time).  It causes ascending paralysis (yes..that’s scary) or muscle weakness starting in the feet and going up the body until it possibly affects the respiratory system.  We are lucky that it was caught in Holt early and he was treated with medication.  Doctors aren’t really sure why it happens in some people and not in others (like Holt’s identical twin) but they believe it is caused by an over-reaction of your immune system to a common infection (viral or gastrointestinal) or vaccines.  One’s immune system is attacking a virus, but after the virus is gone, the immune system doesn’t stop fighting.  It attacks the covering around the nerves coming out of the spine.  So a week or so before he started showing symptoms of GBS, he had bronchitis; that’s where they think it started.

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He was released from the hospital on August 2 (his half-birthday, for which we all did a dance).  He went from not being able to roll over, sit up on his own, bring his hand to his mouth to feed himself to walking and throwing a ball all in a three day period.

If this had happened just over 20 years ago, the only thing we could have done was wait for it to run its course (which it would have) because there was no medicine to help at the time.

Even though he reacted fantastically to the medicine, about 6 weeks after his first treatment, Holt did start to show symptoms of GBS again.  Because it kept coming back, we were nervous that it might be the chronic version of GBS, CIDP (even rarer than GBS, one’s chances of having CIDP are 1:1,000,000 and even rarer in children Holt’s age).  Extra boosters of the medicine (IVIG) helped with the relapses.

We think we have made it through the worst of all of this.  At his last follow-up, I described to the doctor that he felt like a different person, his old self.  He seemed happier and more spritely and laughed more.  His doctor said it looked to her like he “turned the corner”; like the GBS was really on its way out.

He (and the whole family) recently had a nasty virus.  And the symptoms started to come back.  We can tell because Holt doesn’t want to walk (on his feet) up stairs.  He wants to crawl or be carried.  When he is his best self, he always wants to do it himself.  I took him back to the doctor and she prescribed another treatment of the medicine.  Just like the other times, the medicine works quickly and effectively, thank goodness!  Unfortunately, our doctor can’t really tell us why it’s coming back when it seems like it had gone away.  I believe, even though she hasn’t said this, that Holt is her youngest patient with GBS.  It really does seem like we are all flying by the seat of our pants and no one knows what to expect.  I asked Holt’s doctor at his last appointment about the CIDP and if it was more possible that he has the chronic version and not the acute (GBS) version.  She doesn’t believe that he has CIPD based on his age and how quickly the symptoms came on, BUT she said the great thing was that the medicine works, and works quickly, for Holt.  There are some tests that can be performed on him that might indicate CIPD, but the treatment would be the same.  So, I’m not really sure I want to know either way.  Either way, we treat it the same way.

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an oldie, but a goodie.

I believe in my heart that this will not last his whole life.  Husband and I want to think that he’s so young, and his immune system is still developing, and this crazy thing hit him at such a vulnerable age that it will take him a while to recover completely.  It takes some adults months and  years to recover.  Children are ones that recover quickly and nearly fully.

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A few weeks ago we thought that this was over, done. We still believe that it is on its way out.  He may need more treatments of IVIG, but it works, quickly. And we are lucky for that. Every time a relapse happens, I’ll catch myself down and sad. It’s so hard not to compare Holt with Win. Win doesn’t have any of these problems. Win can run and jump all the time. Even at Holt’s best, I can still tell a difference, even if no one else can. I start to feel sorry for him and sorry for myself. As soon as that happens, as soon as I start thinking forward (way too forward) about what his life might be like if he had this for the rest of it, I end up taking him to the doctor to be checked out. Going to a pediatric neurologist is scary as a parent. Not only do you have to be there for your child, but you see a lot of other sick kids. Kids that will probably be sick for the rest of their lives. Kids who may not live a “normal” life, or at least the “normal” life that their parents had envisioned. I see the same thing at the pediatric day unit at the children’s hospital where Holt gets his treatment. I see children that are bald, I assume, because of cancer and chemotherapy. I see little babies there, not knowing what their diagnosis is. As soon as I take Holt to these places, I know how lucky we are. Holt is a smart, precocious, walking, talking, happy child. For the most part, he is healthy. He has just had a stumbling block. This blast of reality hits me and I become all sorts of grateful and much more patient with Holt and myself. These visits to the hospital and doctors office adjust my perspective and give me a moment of grace…something I am thankful for.

I have learned to curb my plural speak. And in the end, as the boys get older, it is probably better – better that I treat them as individuals and not as the same person. Treating them as if they were the same was easier, but I know not better. Just like everything else about parenthood, this has taught me that I am not in control. Life will go on its own schedule and I barely will have input. The universe has already thrown us some curves, you know with the whole twin thing (and that turned out pretty ok) that I’m willing to trust that this will be pretty ok, too.

I want to make

8 Jan

one of these!

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Isn’t it just beautiful?  Click on over to A Girl and a Glue Gun to see how she did it.  What a wonderful gift!

Hunger Strike

4 Jan

My kids are staging a hunger strike. Their demands are simple: they get to watch Barney or Mickey Mouse Clubhouse all day long. And, in return, they will eat a minimum of one meal per day, standing – not sitting – at their table, get their daily value of calories and protein from milk alone, and steal food off my plate at other opportune moments during the day. They will consider eating a yogurt pouch – in the car…if I’m lucky.

I know the first rule of life is to never negotiate with toddlers or terrorists, so I’m not going to do that. I’m writing those terrorists toddlers a strongly worded letter.

Dear children:

I know that you’ve been able to watch a lot tv the past few days. Mommy and daddy have been sick. Both of you have been sick. There was nothing we wanted to do less than to actually get up and attempt to entice you to play with a toy…any toy. Even Mickey Mouse. Or a ball. So we, mommy and daddy, have bent to every request to watch Barney (or the French pronunciation, Barnier, which you have been throwing out recently. I knew our boys were smart when at a mere 23 months they could sense that using the French pronunciation of a word makes them sound smart, a little sophisticated, and a wee bit snarky). We have been more than happy to acquiesce to your demands of switching from Barnier to, what Husband calls high theater compared to Barnier, Mickey Mouse Clubhouse. In fact, we were much happier to change the channel from the purple dinosaur and his singing munchkin friends to ANYTHING else.

But now, boys, now…daddy is almost better. Mommy is on her way to good health. And you….you two. I can tell by your running and screaming around the house, by you playing with toys again, by you pulling the dining room chairs into the kitchen to play with all our vitamin bottles, by your general good mood, that no one NEEDS to watch Barnier all day long…no matter how much you point at the tv and whine and beg for more Barnier with the most pitiful voice I’ve ever heard.

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So, hear me now…we will go back to watching tv on a limited basis so mommy and daddy can use it as tool; so we can have a few minutes to do something that will go much easier and quicker while you watch tv and are not chasing our heels. Watching Barneir all day, and listening to Riff, his dinosaur friend, and his super fantastic singing voice (please find the sarcasm in that) doesn’t allow mommy and daddy to use tv as what it is meant to be: a free babysitter an educational tool. Too much tv and it loses its effectiveness.

Finally, you are also going to start eating real food at your table again. None of this eating a random piece of bread while watching the purple dinosaur who will remain nameless from now on. I know no one has really been enjoying food recently because we can’t smell or taste anything. But that time is coming to a close. And you will eat. And you will eat something other than Meetmow (oatmeal) or hot dogs.

We are your parents, and we love you to the depths of the ocean and back. But we are also the adults…and we will win.

Love,
Mom and Dad

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Merry Christmas from the Perrys

24 Dec

Wishing you a very Happy Holiday Season!lindsaymac20131115_10_b lindsaymac20131115_01_ lindsaymac20131115_02_ lindsaymac20131115_07_ lindsaymac20131115_12_ 4x9_rackcard_front4x9_rackcard_backChristmas Card designed by me.

Photo Credit Lindsay Mac Photography

HWS18MOT: pediatrician

13 Dec

In this episode of How We Survived 18 Month of Twins, I’m going to talk about our pediatrician.

I cannot stress the importance of choosing the right pediatrician for you and your child (the doctor him/herself as well as the office).

The hubs ran a summer overnight camp for many years (and now runs the center where the camp takes place) and I worked at that camp for 6 years. During that time, we got to know one of the local pediatric offices because they were our Physician of Record. I think we were really lucky in this matter because we knew the doctor, we knew the staff, and they were familiar with us as well.

I know that can’t happen for everyone, so here are some things that have been particularly helpful and great with our pediatrician (in no particular order):

#1: Get to know your pediatrician.

Call ahead of time and ask questions of the pediatric (or family care) offices in your area.  Obviously, make sure that your health insurance is accepted there.  Even though both parties (the office and us) were familiar with each other, they offered me an orientation to tour the office and get to know the staff, nurses, and doctors.  I was unable to do so because I was on bed rest, but it was so important to me that this was offered.  The office should welcome you with open arms.  I asked questions about twins and nursing and beginning baby stuff and I was able to talk to nurses who worked there who had had twins.  This resource was priceless.

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#2:  Speak up

Our pediatrician’s office has multiple doctors, nurse practitioners, physician’s assistants, and nurses.  I like that.  I have no problem having my kids seen by someone other than their primary pediatrician for things like ear infections and colds.  The times when I DO want them to be seen by their primary pediatrician (ie. physicals, check-ups, progress stuff) I speak up and tell the scheduler that I will wait to be seen by our Doctor and not by someone else.  The first time I had to do this was when the boys were first born.  The first two days, we had gotten a fantastic report by one of the doctors in our pediatric office (we’ll call that doctor Dr. Marc).  Dr. Marc said that the boys were great and that they’d be discharged before I was.  The boys were born at 4.5 lbs at 35.5 weeks.  They were small and I was trying to nurse.  In the end, Dr. Marc was wrong.  And, way wrong.  The boys ended up losing too much weight and had to stay in the hospital for 9 days.  And, when we heard the news that they weren’t doing great, we were so confused because we had been told by Dr. Marc that they were great.  Eventually I told our primary doctor (we’ll call her Dr. Trip) that I was disappointed with Dr. Marc’s bedside manner and false sense of hope and that I only felt comfortable with her writing discharge orders.  At the time, I didn’t realize that both doctors were part of the same practice, but I was, and am, still proud of my first mama bear moment of: “don’t nobody mess with my kids, or overlook them, or tell me a lie that they’re healthy when they’re almost on death’s door!”

Ok, so I’m sure that Dr. Marc was being genuine when he gave us the report about the boys’ fantastic health.  I just wish he had framed it in a different way like another pediatrician (the one who was on-call when their sugars and temperatures dropped to a scary level) did: “You’re twins are healthy for 4.5 lb, 35.5 weekers.  That doesn’t mean that you’re out of woods, yet.  They are still premature.  You have to make sure they are eating, and eating well, without expending too much energy.  They are small and need special attention.”

If I had been told that, I want to believe that I wouldn’t have been so devastated when all that scary stuff happened (that, and the raging hormones that were running through and out of my body didn’t help).

Anyway, back to the point (there was one, I swear)…speak up.  It couldn’t be more important than when speaking with your child’s doctor.

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#3 Advice line

The thing that I can say I’ve used THE MOST when talking about the pediatrician’s office is the advice line.  They have a nurse, every day, that is there to only answer questions.  You call, leave a message, and they call you back. That, alone, has saved me hundreds of dollars in co-pays (hundreds, you ask?  Really?  YES, REALLY.  Co-pay times 2, because, no, I don’t get a discount for twins).  I remember a few weeks after the boys were home that I was so proud of myself that I HADN’T called the advice line that week.

I’ve had the advice nurse come out to my car to look at diaper rash.  I’ve even had a nurse stay on the line with me while I was in Wal-mart looking for the right type/dosage of medication.  If I just needed a little re-assurance that I wasn’t going to kill my kids from not knowing how to care for them, they were there…and could usually tell a story of their own.  They are always willing to offer a little sympathy (which, let’s be honest, is sometimes all we need when everyone’s been up all night long with the stomach bug). They are fantastic.  I really don’t think I could have made it without them.  Seriously.

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#4 Hours

This is a big one too.  Our pediatrician’s office is open every week day from 8:30 to 5:30 AND Saturday mornings AND evening clinic hours during the school year.  This has been a life savor so many times.  It’s Friday evening and I pick the boys up from daycare and they both have pink eye?  Saturday office hours!  It’s been 6 days of awful sleep and we can’t figure out what’s wrong and it’s Saturday morning?  Saturday office hours!  The boys have been sick for months and I’ve missed more work than I’d like to admit and it looks like they might have ear infections AGAIN?  Saturday office hours!

Do you catch my drift?

#5 Re-evaluate

I think this is super important.  At some point, and I hope not, our needs as a family might change.  Or, maybe, the staff at the doctor’s office rolls over to not as helpful, not as sympathetic staff.  I don’t think there’s anything wrong with re-evaluating your situation and looking for a new pediatrician if that’s what you need to do.  People change and people’s needs change, there’s nothing wrong with either of those things happening.  We just need to be able to adjust.

I have to say…if we didn’t have our pediatrician, we would NOT have survived the boys’ first 18 months.

Enjoy your weekend!  It’s a cold one here.  This Christmas is going to be VERY different from last year.  We’re excited!