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Karen's Musings
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Happy Birthday ellipticcurve!! I hope it is a memorable and sweet birthday.

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Happy Birthday to journeytoernie !  You've disappeared from Facebook suddenly, and I don't know why, so I hope you are okay, but I wanted you to know I am thinking of you and hope all is well and that you have a very happy birthday.
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Three years ago today, my miracle baby, Tova Lieba (meaning "kind heart" or "loved one"), was born. It was the end of a hellacious pregnancy with the sweetest, most beautiful five pound reward at the end. Every day with her is a joy, which probably means her teen years will be hell. I'm so honoured to be a mother to four amazing children. So very lucky to have been given this fourth chance to be called "Mommy."
My Little Princess, then and now:

Tobie 2010



Tobie 2013
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After my last post, I disappeared again.  This was not by design.  On May 29th, I was supposed to see my gastroenterologist in the afternoon.  Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter).  When he was here, he was concerned, because it looked like my line was getting infected.  He felt that I needed to go straight to the emergency room.  Knowing how darned difficult it is to get an appointment with my doctor, I went to her first (she and the hospital are about the same distance).  When I checked in with the receptionist, I was quite early and I asked them to check with the doctor to see if she would prefer I proceed to the ER or wait for my appointment.  Dr. S came out to see me and took one look at the site, which by then was red all the way up to my shoulder, and sent me to the ER.  Argh.

Meanwhile, my husband was in California (the other side of the country) and was expected to be there for at least a month or more.

I knew a line infection probably meant 3-5 days in the hospital, so I arranged for extra babysitting and for my mother to spend the night with the kids.  I arranged for people to take the kids for the weekend in case I was still in the hospital then.  And I settled in for several hours in the ER waiting room.  Once I got called back to see a doctor, she confirmed what I already knew: that I needed to be admitted for treatment, and that I could expect to wait 6 to 8 hours for a bed for admission.  Fortunately, Hopkins has a beautiful new ER, so at least it was comfortable-ish.

The next day was a flurry of tests and cultures, etc.  And shocking, but well-timed, news.  My husband's project in California had been overstaffed, so he was sent home after less than a week there, instead of the promised 6 week project.  Well, at least that meant I didn't need to worry about where to put the kids for the weekend. What we didn't realize at the time was how crucial it would turn out that he ended up being home.  Because my expected 3-5 day hospitalization turned out to be a 16 day saga in which I was barely lucid and have very little memory of even today.  Thank heavens he was able to be there for most of the time I was inpatient.

Shortly after I was admitted, it appears that I aspirated something (we're not sure what), and I got pneumonia (right after having gotten the pneumonia vaccine, ironically).  I have no memory of this.  I do remember going to interventional radiology to get a port put in (lower risk of infection with a port than a PICC or Hickman catheter) and being told I had a fever so I couldn't get it that day.  I imagine that was the start of the diagnosis of pneumonia, but from there, my memory is very spotty.  Apparently after I got sick, I became quite delusional, had a psych consult called in, and ended up with a 24/7 babysitter.

Since getting discharged, I have spoken to numerous people who have told me that they talked to me at multiple points during my 16 day hospital stay - I have absolutely NO memory of these phone calls.  Even a call with my grandmother.  I went on a walk of the hospital nearly every day with my husband and I only remember a couple of those walks.  Apparently, we bought a father's day card for my father, which I only vaguely recall.  Also, apparently I'm a smart-ass.  When I finally got cleared to get a port (I don't remember getting it - I just now have this weird thing implanted under my skin now, which I find really disconcerting!), apparently I said to the resident, "Don't take this the wrong way or anything, but what year are you?" "Fifth year," he said.  "Okay then, you're good," I replied. I can totally see THINKING that, but I can't believe I actually said it.

I also received a blood transfusion (2 units of blood) because my hemoglobin level went down to 6.6.  Bad news bears.  Apparently I said to the nurse, "When my daughter was in the NICU and had a blood transfusion, they made me sign a consent form that said she had a 1 in 16,000 chance of getting Hepatitis B and a 1 in 60,000 chance of getting HIV [it might be the other way around], why aren't you having ME sign a consent?"  My husband doesn't remember me getting a satisfying answer to that question.  It must be covered under my general consent for treatment, which I signed upon admission. Frankly, I don't even remember signing the general consent for treatment, so I'm not even sure that's valid since I may not have been lucid at the time that I signed it!

Because of things that were said and done during my delirium, a condition of my discharge was that I see a therapist weekly for cognitive behavioral therapy to help me "cope better" with my illness.  Well, to hell with them.  I already had a perfectly good therapist, and I'd like to see any of the doctors cope as well as I do with not eating solid food for three years.  But whatever.  I will comply with weekly CBT, but not because I'm not coping well, but because I'm literally traumatized by the fact that I lost over a week of my life in my memory.  I keep learning things about my time in the hospital that I have ZERO memory of and it is beyond disturbing.  Not because the things that happened were disturbing in and of themselves, but because I have NO recollection of them whatsoever.  Two rabbis have told me that they spoke to me several times and have reassured me, without prompting, that I said nothing inappropriate.  (It worries me a little that they felt the need to tell me that I said nothing inappropriate when I didn't ask that question...)

Suffice it to say, it's taking a little while to readjust to life on the outside.  I'm seeing a new therapist on Wednesday who was recommended by our developmental pediatrician - I trust him implicitly and he promised me that she wouldn't be offended if I called her a shrinky-dink, which is crucial to our getting along.  I still am recovering from the pneumonia (I'm told by multiple health care providers that it will take at least a month to fully clear - ugh!).  I have a new feeding tube pump which gives 50% formula and 50% water flushes each hour in hopes of keeping me better hydrated without having to resort to IV fluids via my port (to keep my infection risk lower).  And I see my gastroenterologist again on the 28th, so maybe she'll have more answers for me.

Hah.  Hah!

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This morning, sethcohen finished packing for his trip, printed out directions from the airport to his hotel and various other places that he needed to go, and headed upstairs to say goodbye to the kids.  He told each one of them that Mommy (that's me) was going to take him to the airport and he was going to get on a plane and go away for a while but that Mommy was coming right back home and that he would be home as soon as he could.  He gave everyone hugs and kisses.  Sam was chewing on a marshmallow when he got his little speech, hugs and kisses, and he had a vacant little smile on his face the whole time.  I knew he wasn't processing a single word Seth said, but Seth insisted (based on the fact that Sam hugged him back) that Sam understood.  Until Sam looked at him and shrugged while saying, "But, if you set a marshmallow on fire, it won't be fluffy anymore!"  and then he scampered off...

Yeah.  Did I mention that my kid's on the spectrum?

We'll miss Seth, but we hope that the next six weeks go by quickly and relatively painlessly.  I've hired an extra babysitter to help me in the evenings and on weekends and I hope that's enough to get me through.  Seth's going to have a very demanding schedule while he's in SoCal, so I don't envy him in the least.

On the health front, I had a Secretin MRI/MRCP earlier this week and the preliminary report showed that my pancreas and pancreatic duct are working, and that my common and bile ducts are enlarged.  Not sure what all that means but I'm seeing my GI doc on Tuesday and will know more then.

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I haven't posted to Live Journal since June of 2011 - when we lost Julian all together and it looked like we would never see him again.  I'd like to get back to posting, and I've tried several times, but after such a long lapse it always feels like there's too much to catch up on.  So I'm just going to dive right back in with some salient points.

The Kids
The kids are doing great.  Tobie, believe it or not, just turned 2 years old, but she thinks she's a 4 1/2 year old because everyone else is, so why shouldn't she be?  The triplets, as you may have noted, are 4 1/2 and vary between awesome and incredibly annoying.  The girls fight with each other all the freaking time, but they're so cute and lovable that it's hard to hold that against them.  Sam's doing well and his recent IEP meeting revealed that he's doing well enough to move on to an integrated classroom next year (part typically developing kids, part special needs).  We have seen Julian a few times, but his mother has been refusing to return my calls and emails recently, so we haven't seen him in several months.  It's not what we'd like, but my main focus has to be on the children who are IN my house right now.

Seth
Seth lost his job at the end of December.  He got a temporary job in January for 13 weeks, but that's over now.  Although he's looked for a permanent job locally, he's been unable to find anything so far.  So, he's accepted a 6 week position in California starting this Friday.  He leaves tomorrow.  He'll be working 6 days a week, twelve hours a day, so he won't be able to come home while he's there and my health isn't good enough to go out and visit him while he's out there (more on that later).  So we'll miss him and he's going to be working his tail off, so it's going to suck all around. But the money won't be bad, so we can't entirely complain.  

My Health
My health has been pretty terrible since Tobie was born.  It hasn't been getting better - it's been getting worse.  This year, I've had three hospitalizations, gotten a G-J feeding tube (which has been replaced twice) and a central line, become septic and almost died, gotten a massive clot from my central line, gotten a new central line, been told by the third best gastroenterology clinic in the country (Johns Hopkins) that I should probably look into other clinics in the country because there's not much else they can do for me, and lost about 40 pounds. Now, I needed to lose those 40 pounds (and need to lose another 40), but not eating isn't the way to lose weight.  But, pretty much whatever I eat the conventional way (via mouth), I throw up.  (Not on purpose - believe me, I'm not a fan of throwing up!).  I've been on a medical leave of absence from work since March 2nd and am slated to be out through July 1st at least (probably longer).  I have little energy for anything most days and spend a lot of time in pain and nauseated.  There's really no end in sight.  My options right now are:  surgery to get a gastric neurostimulator (the surgeon at Hopkins won't do it because he's an ass, which is why my GI doc has suggested I look elsewhere in the country), surgery to have my stomach removed (which I feel is a little drastic at age 36, but is under serious consideration), surgery for a different kind of J-tube (also under serious consideration, but on hold because I was recently septic), or just putting up with the status quo.    I have an appointment at the Cleveland Clinic (#2 Gastroenterology Clinic in the country) in September and I've asked Mayo (#1 in the country) to review my records to see if they'll offer me an appointment.  I'm also trying to get an appointment at Mass General.  Hopefully something will come through.

And that's about it.  More to come, I'm sure, but that's enough for a catch-up post.  I'll leave with a new picture of us:


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Friends,
This will be the last update you'll receive regarding Julian's status.  As many of you know, our legal guardianship was terminated as of June 7th, 2011.  Seth and I agreed to this despite Sarah having failed to meet all of the stipulations of our prior consent order as we felt that a prolonged battle with Sarah was not in Julian's best interests and it was certainly not in the best interests of our other children.  At that time, Sarah was still bringing Julian to see his therapist, Dr. G, and his developmental pediatrician, Dr. S., and had plans to establish an IEP with Frederick County schools where she plans to send him in the Fall.  So although it wasn't the best case scenario we had hoped for, it was a workable solution for Julian.  Sarah had agreed to a continued relationship between Julian and us - she agreed to us continuing to having Julian every other weekend, Thursday through Monday for the foreseeable future.
 
Within a week or two of the termination of our guardianship, it came to light that Sarah was no longer making any effort to take him to see his therapist, Dr. G. 
 
She has also ceased pursuing getting an IEP set up in advance of his start date at school and will not seek the assistance of an educational consultant.  She has full faith and confidence in the Frederick Schools and knows he will do well there without having the IEP.
 
Finally, earlier this week, we were told that she is no longer taking him to see Dr. S.  She has found another "developmental" pediatrician in Frederick.  I put "developmental" in quotation marks because Dr. S. has never heard of him and believes that he is a general pediatrician who is willing to supervise Julian's medications.  However, Julian is on a complicated regimen of five different medications which took three years to figure out including a series of consults with a specialist at NIH.  He should be followed either by a developmental pediatrician or a child psychiatrist.  Sarah has no desire to transfer records or notes from Dr. S. to the new doctor, so it is my belief that she does not intend to continue his medication therapy over the long term.
 
Yesterday Seth and I were told that we will no longer be permitted to have Julian overnight.  Although we were supposed to have him this weekend, starting last night, we may not have him.  We may instead, if we wish, see him this Sunday during the day. 
 
Truthfully, Seth and I had already decided as a family that we could not continue a long-term relationship with Sarah and Julian as it has become detrimental to the health and well being of our other children and to our family as a whole.  Julian's behaviour has deteriorated rapidly since the transition to Sarah's home, his coping mechanisms are minimal, her interference is maximal, her unwillingness to communicate is astounding.  We have two other special needs children, including an autistic son who needs to be priority 1 right now, per his therapists and Dan S.  So we were already planning to ease off on frequency of visits over the course of the summer, but we had not expected an abrupt end to them without any notice.
 
I expect that there will be another abrupt end to even our Sundays with him, and I anticipate the possibility that this Sunday may be the final time that we see him.
 
I tell each of you this end to this long journey not because there's anything to be done about it, but because each of you played a role in Julian's life, or in ours, through this journey, and we feel you deserve to hear the closing act.  Time heals many things, and although in my heart Julian will always be my son, I have four other children to focus on now who need me more than ever as they adjust to the new paradigm of our family life.  I want to thank each of you for the help that you offered at the times that we needed it.  I'm sorry that we weren't able to maintain a level of civility and collaboration with Sarah over the years with Julian as we had envisioned, but I believe that requires a level of maturity, self-awareness, and selflessness that she does not yet possess.  Perhaps she'll grow into that someday.  I hope so, for the sake of her children.  (yes, I said childREN....she's pregnant, expecting another baby in September).
 
We don't regret bringing Julian into our lives - he opened our hearts and our minds to so much and will forever be our first son.  It will take time to adjust to this loss and our family will never be the same without him.  But it is time to move forward and focus on the rest of our children.
 
With much love, and some hope,
Seth, Karen, Sam, Abby, Ellie, & Tobie

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 I am getting an ear infection.  My second in two weeks (different ear), which is pretty much how my life goes.  I can't find my ear drops so I needed to get it refilled at the pharmacy.  This involved the unenviable task of speaking with a CVS pharmacy technician.  UGH. 

 After 11 and a half minutes on hold I got an idiot tech who couldn’t even figure out how to use a phone, let alone a computer. And he sure as heck didn’t know how to use “active listening" skills.  Observe:

“Hi, my name is Karen Cohen.  I had an ear drop filled recently, but I can’t remember the name of the medication and I need to refill it.  It is the only ear drop I have had filled in the last couple weeks, so it should be fairly easy to find.”
“mumblemumblemumble”
“I’m sorry, I really can’t hear you.”
“mumblescratchymumblescratchety”
“I’m sorry, but it sounds like you have something over the speaker part of the phone.  I can barely hear you.”
“No I scratchyscratchy don’tscratchyanyscratchythephone”
“Really I can’t hear you.  There’s something wrong.”
*something changes in the quality of the phone*  He has clearly taken the phone off his shoulder and actually put it up near his mouth.
“What is your last name?”
Though I am now exasperated that he didn’t bother listening to my name at the beginning of the call, I say, “Cohen, c-o-h-e-n.”
“C-o…?”
“h-e-n.”
“C-h-e-n?”
“c-O-h-e-n”
“First name?”
Ugh.
“Karen.  K-a-r-e-n.”
“K…?”
“-a-r-e-n”
“K-a..?
“-r-e-n”
“K-a-r-e..”
“N!!!!  K-A-R-E-NNNNNN!!!”
“Okay.  Which medication would you like to refill?”
“ *sputter*  Really?  After keeping me on hold for over ten minutes it would have been really nice if you would have at least *tried* to listen to me when I was talking.  I don’t remember the name of the medication, but it is the only ear drop that I have filled recently.”
Stupid tech fumbles around for a *full*  minute or so.
“I don’t see it.”
“I filled it on June 9th or 10th.  It’s the only ear drop I’ve filled recently.”
“Okay.  Yeah.  Let me look.”
Silence.  Fumbling around.  Muttering to himself.  No acknowledgment of me being on the other end of the phone.
“Hello????”
“Yeah, I don’t see it.”

“MAY I PLEASE SPEAK TO THE PHARMACIST?”

“Oh, okay.”

 And then I spoke to Daniel, pharmacist extraordinaire.   Who found it in 10 seconds flat.  And it will be ready tomorrow.

 GAH.  


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I now have documented proof that I have a brain!




 
MRI today went fine and I came away with a CD of the images, all 344 of them.  Unfortunately, I didn't go to medical school so I don't know what any of them mean, but it IS clear that there's a brain in there.  Don't know when I'll get the radiologist's report.  I'm following up with the neuro-ophthalmologist on the 15th, but I may need to call him before that, because I feel like my peripheral vision is shrinking.  Ugh.One day at a time, right?

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I started a post a while ago and I'm clearly never going to finish it, so here's the partial post I had put together since I may as well get it out there.

On Sunday, I packed up all the kids and went up to Baltimore to take them to the Aquarium.  My mother met us there, so I had some help, but it was still a lot of work!  Well worth it thouh.  We did not survive the trip completely unscathed, however.  Poor Sam took a tumble on the sidewalk walking from the parking garage to the aquarium.  Oh the screaming.  Let me paint the picture for you:  I was wearing Tobie in a Mei Tai wrap and Julian was walking ahead of me.  The triplets were wearing monkey backpack harnesses (the tail of the monkey is a teather that I can hold onto).  I was already struggling to keep from getting tangled up in the harnesses, keep up with Julian, and keep Tobie from bouncing around too much when Sam tumbled.  Poor Sam was petrified and in a fair bit of pain, too.  He got a big bump on his head and a scratched up nose and wanted to be picked up for comfort.  And everyone around me was just staring at us.  Seriously, people.  You don't have to help me if you see me struggling, but the least you could do is politely look the other way instead of staring at the free freak show in front of you.  I cannot be the first woman to wander the streets of Baltimore with five children in tow.  

Once I calmed Sam down, I put him down and we started to walk again and Julian got hysterical because Sam's nose start bleeding.  Perfect.  More stares, but I got it cleaned up and everyone was okay.  Of course, right after getting Sam all cleaned up, I ran into a fellow board member from my multiples club.  She was out without her kids so she looked calm and relaxed.  I was out by myself with all five of my kids.  I'm sure I did not look calm and relaxed.  Oh well.  If anyone will understand it will be another mom of multiples.
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The appointment with Dr. S at JHU was definitely worth the wait. She had a lot of good thoughts for moving forward:

- First, she said not to lose hope that the gastroparesis may just resolve on its own over time with no rhyme or reason to it.

- She thinks some of the nausea is related to the gastroparesis and some may be related to hormone wackiness. I have polycystic ovary syndrome (PCOS), which can wreak havoc on hormonal balance. She'd like me to talk to my OB/GYN about getting back on metformin, which I'd taken before I was pregnant (PCOS is linked with insulin resistance, so metformin tends to help reduce the symptoms and restore hormone balance). She's hoping if I get that under control that it will help relieve the nausea. She also noted that the PCOS is probably the reason I'm not losing weight despite barely eating.

- She said that with most motility disorders your gut is essentially "confused". Throwing up for 8 months while I was pregnant with Tobie probably started a vicious cycle. She said your gut kind of gets stuck in a pattern. The more you throw up, she said, the more you throw up. To that end, she wants to see if she can get me out of this pattern for now. She's suggested that I revert back to a completely liquid diet. She said to try to drink 3-4 ounces of ensure/boost/carnation instant breakfast every 3-4 hours. Even if I don't like it, I should just think of it as taking medicine and force it down. Fair enough. While I wasn't able to keep Boost down when I tried it before, I got some Carnation Instant Breakfast and Ensure and both are easier to stomach.

- Even though the botox wasn't a miracle cure, the fact that it did any good was a great sign. She said with the botox injections, if you hit the exact right spot, it can cure a person forever. If you hit *near* the right spot, a patient can have relief for up to 3-4 months. Unfortunately, there's no map, of course, so there's no way to know if you've hit the right spot until you do. She recommends continuing the botox injections every 3 months. I had my last botox injections in October, so it's about time to try again. She said not to add back in solid food until after trying the botox again.

- She gave me a referral to Dr. E who does their gastric pacer surgeries. She said that by meeting with him now, we open that door so that if the other things don't work, we don't have to waste time waiting around for a consult with Dr. E.

- She's ordered a 4 hour gastric emptying study with solid & liquid combined. That's scheduled for 2/25/2011. She also ordered UGI/SB xray series. That is scheduled for 1/19/2011. She said both will give a better idea of where things stand now, but are also both typically prerequisites for a consult with Dr. Eckhauser, so it's worth getting them out of the way now.

- She suggested changing my exercise routine to add in 3 10 minute periods of continuous walking. She said the idea is to encourage gastric emptying any way we can, and gravity may help us out here. This should be relatively easy to incorporate into my routine.

- She said to empty the Nexium capsules into applesauce and eat them that way. She's concerned that the Nexium could just be sitting in my stomach and not doing me as much good as it could be.

- Interestingly, she didn't suggest that the narcotics are the culprit. She asked if I really needed them: "would you be down for the count without them?" Yes. Then I should keep taking them, she said. She just said to stop taking the narcotics and the domperidone (if possible) for 3-7 days before the gastric emptying study. If I have to take the domperidone in order to guarantee that I can keep down the food for the study, then so be it, but it would be preferable to get it out of my system first.

Overall, it was a very positive appointment. I admit having been skeptical that there was really any point to the consult - and I really expected her to say that I had exhausted my non-surgical options, but it was nice to hear that she had some simple strategies to try and improve my quality of life in the meantime, even if the surgical options turned out to be the right answer in the long run.

I'll be following up with her on March 3rd once all the other testing is complete.  

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I was supposed to see a doctor at Johns Hopkins at the end of October. A week or so before the appointment, I got a call from the department assistant telling me that they needed to cancel the appointment because the doctor was out sick for an indefinite time. I could reschedule for her next available appointment or meet with one of the other doctors if I wanted to be seen sooner.

So I called scheduling and the doctor's next appointment available was January 4th. I asked if the other doctors could see me instead. No problem, they said, Dr. C's next appointment is February 21st and Dr. whatever's next appointment is March 4th. No thank you. I stuck with the doctor I'd originally scheduled with (my preference anyway).

Now we're less than two weeks away from the appointment and I checked my voicemail today to find a message from Leslie at Johns Hopkins asking me to please call her.

My stomach sank as I dialed her number.

But, hoooray! She was calling to confirm the appointment and to ask me to fax my medical records to her. That is a much better reason to call. Phew. Maybe JHU will actually have some answers for me. Hah!
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 I do my best to (almost) never curse in my blog. Not because I don't have a mouth like a sailor, but because there's something so permanent about it. But seriously, WTF?

Our heat died last week on the day we got a few inches of snow (not a lot, but still, it was measurable, so that's something and the point is the timing is lousy). It's fixed now, but now we need a new water heater... about $1100 minimum we're told. I was ready to fly to Florida today and Seth landed in the hospital with mysterious abdominal pain yesterday (he's still there, but hopefully coming home today). Tobie has a fever.

WHEN, oh WHEN will the universe give our house a BREAK? I am so tired of this. It's not this year. It was last year too. Will 2011 be ANY better?????


(Seth's okay  - but they haven't been able to find the source of his pain.  This is frustrating, but does mean it probably isn't anything serious or life-threatening, so we'll at least take that for the moment).

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There are so many days where I have things to blog about, and yet there's no time. Ever. When I finally have the time, I'm exhausted. Who am I kidding? I'm exhausted even when I don't have the time. Nevertheless, life is passing by and I've failed to record any of our comings and goings milestones, successes, failures, joys or frustrations. So here are a few of the highlights...

  • Because this is us, and because not enough things have gone wrong this year, our washing machine broke. This may seem a minor inconvenience, but consider the amount of laundry that a family with five young children creates. We do laundry multiple times every day in our house, and if we don't, the piles take over. We have great friends and neighbors who generously allowed us unfettered access to their laundry facilities, but it still adds complications to our already complicated lives. I'm happy to say that we now have a new washing machine. I'm less happy to say that it's already broken (might have been defective from the start). We've got someone coming out to look at it tomorrow.
     
  • A first of firsts: Tobie got her first tooth this past weekend. This is the first time I've been the one to discover one of my chidrens' first teeth. I know it's something small but it makes me feel unbelievably happy to have been the first to discover this milestone. As a busy, working mom, it's all too easy for milestones to slip by without immediate notice.
     
  • My health is not significantly improved since last I wrote about it - it's just gotten to be boring to write about. I had botox injections inside my stomach (around my pyloris). While my pyloris as never looked younger, I still have crow's feet and still have difficulty eating solid food. Still, it wasn't without at least a small amount of success. I'm in less pain, and can now keep small amounts of solid food down. It was very little trouble and did help a little bit, so it was definitely worth trying. I have an appointment at Johns Hopkins in January, so hopefully they'll have better answers for me. As far as I know, I have exhausted my non-surgical options, so now it's a matter of finding a doctor who can do the surgery that I need (there are a limited number of hospitals in the country who do gastric neurostimulator surgery). We'll see where this goes.
     
  • We had Sam evaluated by our developmental pediatrician. This is the same dev. ped. who evaluated and treats J for his ADHD, anxiety, etc. J's evaluation report 3 1/2 years ago was a page and a half. Sam's report was nine pages long. There's some possibility that Sam's on the autism spectrum. On paper, he looks very autistic, but in person, he's far too socially engaged to strongly support that diagnosis. He does, however, have a whole host of other issues. He's probably got OCD (he's a little too young to diagnose with OCD, so normally at this age, his behaviours would be attributed to ASD instead. This is where it all gets fuzzy). He's got ADHD inattentive type (no shock there). Cognitive delays, speech/language delays, anxiety, and more. He's a complex kid, to say the least. The best thing I can say about the whole thing is that at least we have a great team working on his side.
     
  • We had a gaggle of people over for Thanksgiving, including J's mom and grandparents, our mothers, my BIL, and more. A fascinating cast of characters, to be sure. It was a stressful day, but everyone seemed to enjoy themselves, and I put out a delicious spread of food, if I do say so myself.
     
  • Tobie still doesn't sleep through the night. This is partly because she's been sick for the better part of a month, but also just that she's not there yet. This means that I am perpetually tired - I cannot wait to get a whole night's sleep again.
     
  • I have more to say, but I've fallen asleep at the keyboard two or three times already, so I'll have to catch up more later.
     

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Today is our 8th anniversary.  

So far, today I have had a three hour dental appointment, a two hour hospital visit, during which I had an endoscopic procedure to inject botox around my pyloris.  And tonight I get to go to a board meeting.  Awesome.

Nevertheless, I'm still wildly in love with my husband, and proud to share this crazy life with him.  I wouldn't have it any other way.  What a wonderful family we've created together.  8 years, 5 kids, perfection.

 

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I think I forgot to mention that we had Sam's IEP meeting on the 16th. He qualified for the county special needs class. Bittersweet victory for me.
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Albert Einstein once said, "The definition of insanity is doing the same thing over and over again and expecting different results". This is the definition that I've been working with for most of my adult life. But today, I discovered the true definition of insanity. Seth was working and I was home alone with five kids.

Five kids.

Alone.

Eight hours alone with five needy kids is not my idea of restful. I adore my kids, but with Tobie at this age where I can't put her down much, it's very difficult to spend a whole day with them without any help. Keeping them entertained is a bit of a struggle, since they're all at different levels and have different interests. So I did something that can only be defined as insane. I packed everyone up and took them to Target and then out to lunch. By myself.

Frankly, I'm proud of myself. I generally live in fear of being out with all five of them without any adult backup. I love my kids, but there's only one of me. I worry about one of them running across the parking lot, one of them breaking something in the store, one of them melting down while all my hands are tied up with other kids. I don't like cooping them up in the house all day - it's important to get them out and enjoy the world. So it's important for me to overcome my own fear about taking them out.

Since I needed some clothes for the girls, and everyone needed shoes, and J was desperate to spend his allowance on crap (a.k.a. Bakugan), Target seemed the logical choice. But by the time we got ourselves together to get out of the house (First I made breakfast* and then got everyone dressed, then Tobie had to eat, everyone needed to get shoes on, then everyone needed diapers again, etc.), it was almost 11am, so I knew that we'd need to get something to eat while we were out or I'd be facing four very grumpy children. Five kids in a restaurant. By myself. Truly insane.

And yet? It all got pulled off without a hitch. J pushed the stroller so that I could navigate the store with the triplets and a cart. No one broke anything. They weren't fighting me for stuff I didn't want to buy them. No one was fighting. We even survived lunch with no scars.

We came home and I attempted to get the triplets to nap (hah!) while I fed Tobie. The triplets didn't nap (they destroyed their room, instead), but J fell asleep on the couch (score!). And finally, Seth came home from work. I fed Tobie again and we piled everyone back in the car and drove to Costco, where we spent far too much money, but it was entirely necessary, as we had almost literally no food left in the house. Our coffers were bare and it was time to re-stock. So re-stock we did!

It was a productive day. I like productive days. I feel so accomplished and competent when we can accomplish stuff in the midst of parenting five kids. We got laundry done, several loads of dishes, some cleaning, some good quality time with the kiddos, I rearranged the triplets' bedroom furniture, and still managed to keep Tobie happy most of the day. All in all, the day was a success!

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* Breakfast just for the kids (Seth wasn't home and I wasn't eating) took thirteen eggs, 8 pieces of toast and nearly an entire stick of butter. And I wonder why we need to shop at Costco!
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I have a lot of good doctors. I'm too young to have as many good doctors as I do. But I'm grateful to have them, nonetheless.

Today I saw my gastroenterologist to follow up after having had a second opinion appointment. He'd been hoping that the doctor at Georgetown would have had some insight, but she really didn't. Basically, he's a super genius who was already doing everything right. Before giving serious consideration to a gastric pacemaker, he wants to try a few more things. Most importantly, he wants to get my pain under control. He's hoping that if the pain gets under control, I'll be better able to tolerate food.

So he gave me a script for Dilaudid. Not only that, but he prescribed 60 for a 2 week trial period. Most doctors wouldn't have prescribed Dilaudid in the first place, let alone more than 10.

"You realize you're the only doctor on the planet who actually treats pain effectively."
"What do you mean? You're in pain, I can help it. Why wouldn't I?"
"Most doctors don't treat pain. They assume any patient complaining of pain is drug seeking."
"I prescribe pain medication all the time!"
"My husband's pain specialist prescribed him 1 vicodin every six hours for a severe back injury."
"That's ridiculous."
"Yep. I told you; you're the only doctor on the planet who treats pain effectively."
"But the pain is ruining your life."
"Yep. And that's why I'm glad you're my doctor."

I love my doctor. He's genuinely concerned about my well-being. He's genuinely concerned with making me better. And he shows that he cares. I have a lot of really amazing doctors. He might be the best of the bunch. And not just because he gives me narcotics.
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 Friday was a complicated day.   It was supposed to be my first (half) day back at work, but the best laid plans of mice and men...

I saw my gastroenterologist in the morning, and he's beginning to think the best thing to do is to consider "gastric pacing" for the gastroparesis, because it is thus far not well enough controlled via medication.  I'm still losing weight, but not at an alarming rate thankfully.  I'm in pain all the time, nauseated all the time, and can barely keep food down.  When I do keep food down, the pain is excruciating and I spend hours worried I'm about to throw up (and often do).    Gastric pacing is, well, kind of what it sounds like.  It's essentially a pacemaker for your stomach.  It's done laparascopically, but I don't know whether it's inpatient or outpatient.  Frankly, I'm getting tired of having to learn new medical terms.  My google-fu is extremely good these days and I really wish I weren't so practiced at it.   Anyway, I'm thinking if this really is the direction we end up going in, I want to wait until the end of the summer to deal with it.  I've already had enough surgeries to last me for the summer.  Meanwhile, he wants me to go get a second opinion from the chief of gastroenterology at GW.  Her schedule, unfortunately, is booked out until February.  So he's going to call her directly and see if she'll squeeze me in, because obviously waiting until February is not an option.  Right now I can't keep down a bite of food without taking four (4!) different medications before eating.  No way I can survive like this until February.

I love my gastroenterologist.  He really cares about how I'm doing, he's extremely sympathetic.  It's important to him that my pain be appropriately controlled and that I get better.  I mostly joke with him about my crap luck when it comes to all things medical - I mean, I can either laugh or cry about it, right?  And I'm tired of crying.  And he said to me, "I know you're sitting here laughing about it, but I also know that underneath that, you're really suffering and I want to make you better."  He emphasized that sending me to GW for another opinion was in no way suggesting that he was releasing me as a patient, which is good because I love him and he's my best doctor (and I have a lot of really awesome doctors) - he's not allowed to get rid of me that easily.  He also said if I start losing weight at a faster rate, he'll probably put me on TPN - something I'd done my best to avoid through my entire pregnancy, but probably not a terrible idea if this goes on for too much longer.

When I left the GI's office, I called my surgeon's office because my abscess was getting worse and when I'd talked to them on Thursday about it, they'd said to check in Friday morning.  Not any better, and I was running a low-grade fever, so they brought me in to see my doctor's partner (my doctor was at the surgery center).  When I got there, the doc tried to aspirate it, but said the best thing to do would be to go back in there, either through the existing incision or another one, so they called over to the surgery center to see if Dr. C. could fit me in.  Luckily (thanks to the magic of gastroparesis), I hadn't eaten anything, despite the fact that it was almost lunchtime.  So I called a friend and asked if she could pick me up after the surgery (can't drive after general anesthesia) and thankfully she was free.  Then I called Seth to tell him he'd need to find his own ride home from work (I had his car and had been planning to pick him up).  Then I called my boss and told him I wasn't going to be in after all and that I'd see him on Monday.  Sigh.  

So that makes three emergency surgeries in three weeks.  See why I want to put off this gastric pacing thing?  

I have a post-op appointment Monday morning, and then I'll be at work for the rest of the day.  You know, assuming that I don't have another surprise surgery.   (Maybe I shouldn't even tempt fate by saying that!)

That's all for now.  I think it's quite enough anyway.

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J went to a birthday party recently (he goes to a lot of birthday parties - he has a very busy social calendar!). As is customary at children's birthday parties, he received a goody bag at the party. It was a safari party, so he received all kinds of fun things - binoculars (which he was devastated at having accidentally left on the metro), a safari hat, a little seed/planter thingy, and some other fun things. But the most prized possession in that goody bag was, by far, a delightful little notepad and coordinating ball point pen.

He couldn't be happier with this treasure. He's been drawing in it, writing in it (to the extent that he's able to), and has been a happy camper because of it. One of the first things he did with it was make a self-portrait, which he gave to me:

He's become such a delight to be around. As he gets older, he gets more interesting, more curious, more interactive. He's maturing at a rate that is unfathomable to us, and it's amazing to watch his growth. It's summertime, which is a great time of year for him - he gets to just be a KID for a couple months, with fewer responsibilities (he still has summer homework to do, but we can take our time with it, etc.). He runs and plays hard at camp all day, swims 2-3 times per day, gets lots of energy out, and comes home happy. It's great.

In the last couple of months, the triplets have gotten just enough older, just enough more mature, and just enough more cognitively aware, that J has discovered that they are actually pretty fun to play with. He'll help them build trains, or towers with legos, he'll chase them around giggling, he'll put on a show for them, push them on their tricycles - it's endless. And beautiful.

So this morning, he was running around like a maniac, chasing the triplets around the dining room and living room, and popping out to surprise them and they were giggling like maniacs - so delighted for the attention from big brother. I called J into the kitchen to help get his lunch together and he came running in breathless.

"I love playing with the triplets, Eema."
"I love that you love playing with them now. I'm glad you're having fun!"
"Oh, it's SO much fun to play with them! You should try it sometime!"

I stifled my giggle, because he was quite serious and I sensed that laughing at him right then would not go over well, but there he was - all sweetness and innocence. The portrait of perfect contentment. He's right, of course. We could all stand to play more with our kids - and enjoy this time while we have it. I'm sure he didn't mean anything that profound, but it really is true - I may not have learned everything I needed to know in Kindergarten, but this kindergartner (now a rising 1st grader) has taught me a lot about perspective.

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You know what?  I'm quite tired of pretending that everything's okay.  It isn't.  I'm literally falling apart from the inside out.  In the nine weeks since Tobie was born I've had the following procedures:
  • Upper endoscopy (EGD)
  • ERCP (endoscopic surgery)
  • Echocardiogram
  • Gastric Emptying Study (eating a radioactive egg)
  • Head CT Scan
  • Abdominal CT Scan
  • Ultrasound
  • Abscess aspiration
And tomorrow I'm scheduled for surgery (more on that later).

In the nine weeks since Tobie was born, I've been diagnosed with:
  • Gallstones
  • Mitral Valve Prolapse
  • Thrush
  • Blocked milk duct
  • Gastroparesis
  • Pancreatitis
  • Mastitis
  • Abscess (resulting from the mastitis)
I've really had quite enough.  I saw a surgeon today to confirm my OB's suspicions that the mastitis has progressed into an abscess.  I was really hoping that he wouldn't agree, but there really was no doubt.  He did an ultrasound, tried aspirating the abscess and the backed up milk (I have a huge lump about 2 inches wide and 4-5 inches long that's probably all milk).  But he wasn't successful, so tomorrow I'm having surgery.  

I have an amazing husband, awesome kids, some really great friends.  The rest of my life can suck it.

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First, I should make very clear that radioactive eggs are disgusting.  Even if it didn't have a rotten metallic tangy taste to it, just sitting there chewing a hardboiled egg with no water to wash it down, on an empty stomach, when severe persistent nausea is already a problem, thinking about the fact that you're intentionally swallowing a radioactive substance is stomach-turning in and of itself.  I daresay, I will have more pleasant meals at some point in the future.  

Anyway, I miraculously  kept it down for the duration of the study, but threw it up when I came home, meaning it's unclear how much radiation is actually still in me.  According to Seth's research I'm emitting gamma rays right now, but it can't be getting into my breast milk.  Even if it was getting into the breast milk, apparently I don't even have to "pump and dump" .... I just have to pump and freeze until at least 5 half lives have passed (about 30 hours).  Then the radiation magically goes "poof".  Or, um, something more scientific sounding (per Seth: "it goes across the universe in the form of gamma ray photons."  Frankly, that sounds like a bunch of hooey also, but I guess he knows what he's talking about).  Obviously, we're exercising an abundance of caution, but I'm irritated at the fact that no one's told me I shouldn't be holding her, but everyone's said I shouldn't nurse her, when apparently the risk has nothing to do with my breast milk. (No, I'm not emitting enough radiation that holding her will harm her, but the point is my milk doesn't have anything in it that's going to harm her either)

I'm not currently glowing in the dark, so I figure we're pretty safe.  But if I grow an eleventh toe or something, I'll make sure to post pictures.

Oh, and I don't know the results of the study, but I should know when I see my doctor Monday afternoon.  Meanwhile, my doctor switched me to Domperidone which is working way better than the Reglan (without all the yucky side effects), so I have been able to keep a couple things down (half a bagel last night - win!).


HULK SMASH!!!

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So because I've got doctors who are all over my medical issues like white on rice, I'm having a lot of tests.  Last week I had an endoscopy (EGD) and an MRCP (MRI of the common bile duct), followed by a procedure.  This week, is even more fun-filled.

Today:
Echocardiogram 9:40am
LC appt. for Tobie at 1:30 (this isn't a test, but it is something that's on my plate today)
Ped. appt. for Julian @2pm (ditto above - not a test, but one more thing to fit in)
4pm gastric emptying study.  That's right, I get to eat radioactive eggs*.  Bet none of you can say that today!

Wednesday:
Nothing!

Thursday:
Abdominal and Head CT Scans.

Friday:
TBD

Should be an exciting week!  Whee!    Admittedly, this is the kind of excitement I could live without.

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* I was worried that I wouldn't be able to eat the radioactive eggs (aside from the obvious conundrum of how to keep them down), because of the kashrut issue, but was surprised to find out that they don't present a huge kashrus issue (something about them not being ingested for nourishment, plus they're cooked in dedicated cookware and it's definitely a chicken egg, not like a bacon infused ostrich egg or something).  Anyway, what I forgot to ask is whether they get a bracha. I'm guessing not.

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I've been feeling pretty awful, as I intimated in my post the other day. High fever and abdominal pain topped the charts on the ick factors most of the week. Tuesday I was so frustrated with it, I went to my internist who was also puzzled. Since I was scheduled for an endoscopy on Wednesday anyway, my GP faxed over my lab results to the GI doc, since they indicated elevated liver enzymes, among other things. The GI doc did the endoscopy and found that my stomach was in pretty bad shape, so he changed the PPI I'm taking and increased the dose significantly. But that still left the mystery of the liver enzymes, severe abdominal pain and fever. "Well, I think you have gall stones" he said. "But I don't have a gallbladder" I said at the same time that Seth said, "But she doesn't have a gallbladder!" Turns out, it doesn't matter. You can get gallstones even after a cholecystectomy, and although I find this to be entirely unfair, it doesn't negate the facts. He scheduled an MRI for me for the next day and said depending on the results of the MRI I would either need to have an emergency procedure on Friday or we'd have to talk about next steps. He prescribed me percocet for pain, noting that there was no possibility that codeine would cut it for that level of pain (have I mentioned that I love my gastroenterologist?)

I never made it to the scheduled MRI, because Wednesday night the percocet wasn't cutting it. Six pills in six hours and I was still sobbing and screaming in pain. My husband told me to go to the ER but I stubbornly said no way no how. By 11pm, I had conceded. I put some things together, defrosted some frozen breastmilk for Tobie, and had a neighbor take me to the hospital. I was admitted to the ER just around midnight, but didn't get a bed until 1am. And then I laid in bed sobbing until Seth called the charge nurse at 2am and demanded that SOMEONE see me, because I hadn't so much as had a nurse say boo to me. The nurse told him I couldn't have pain medicine until the doctor saw me, and he was with other patients ahead of me. Obviously we knew this, the question was how long until a nurse, at the very least, checks in on me. Finally around 2:30 I got seen, and shortly thereafter, Seth arrived at the ER (my mother came to stay with the kids at the house so he could come help advocate for me). I got Dilaudid shortly thereafter and things started looking up. The ER doc was planning to send me home (and what on earth would I have done once the dilaudid wore off?), but my GI Doc had them admit me. The hospitalist who admitted me kept telling me it couldn't possibly be a gallstone because my bilirubin was not elevated, but I didn't know her from anyone, and I was more willing to trust my GI doc's opinion, even at 4am over the phone.

Once I was admitted, I asked for a breast pump. When the shift changed at 7am, I asked again for a breast pump. I acquired a breast pump at 11:30am only after having contacted a friend who is a lactation consultant at the hospital - *she* is the one that made sure I got one. I find this wholly unacceptable, but fortunately, I've got friends in high places (hah!), so I know who to send the letters to, and they're already written. Meanwhile, I was still in the ER waiting for an inpatient bed to open up, which didn't happen until 3:30pm. The only plus side was that I got frequent visits from the Dilaudid fairy throughout the day.

Dilaudid, at least, cut my pain down to something manageable, but it had curious side effects. Like all narcotics, it can be sedating, it can make a patient itch, it can cause or exacerbate nausea. Turns out, it can also cause hallucinations - in my case both visual and auditory hallucinations. I kept hearing snippets of music out of the corner of my ear, but if I turned toward the sound it was gone in an instant. One day, I watched a tiny little bug crawl on the bathroom tile. Suddenly the tile pattern was swirling all around it in a psychedelic freakish way. Then the pattern morphed and then the tiny bug (I swear, I'm shocked i could even see it, it was teeney!) morphed into an ant and then a, I dunno, something bigger than an ant and then a giant spider and the swirls kept happening and suddenly I said, "Don't be stupid, Karen, this isn't real!" and it was gone - vanished as if it had never existed (which, obviously, it hadn't!). Sometimes I would hear voices, or see people in front of me who weren't there. For the life of me I can't figure out why someone would WANT to have these feelings, hallucinations, sensations. There's nothing pleasant about it, though I've heard that people actually get addicted to this stuff. Yuck!

So Dilaudid aside, while I was in the hospital, I did get that MRI that I had been hoping to get as an outpatient, and it showed that the common bile duct was significantly swollen/inflamed, though they didn't see a stone per se (they hadn't used a contrast dye in the MRI, so it would have been a long shot to visualize it). I was scheduled for a procedure the next day to take a look, remove the stone, if any, and to enlarge the opening to the common bile duct so that it wouldn't get obstructed by any future stones. At least I knew that all the pain and misery wasn't just in my head. There was actually something I could point to. And wouldn't it be a bonus if it turned out that this was the whole reason behind the continued nausea and vomiting? I was eager for the procedure to be over with so I could find out if there would be relief at last. I was scheduled for Friday afternoon and had hoped to be allowed to go home by Shabbos.

The procedure was supposed to be done under light anesthesia, but because nothing is ever simple in KarenLand, and I was only 7 weeks post partum, they had to intubate me and do full anesthesia because the risk of aspiration was too high. (Turned out they were right to do so - apparently I threw up a bunch of times during and immediately after the surgery) This meant I'd be staying at least one more night. Not shockingly, my GI Doc was right - there was a stone, which he removed, and then widened the opening to the duct so that it wouldn't get obstructed in the future. The doc said my pain should get better in about 24 hours.

Unfortunately, the nausea/vomiting hasn't gotten any better and I'm still in a fair bit of pain. Hopefully, the nausea is related to the stomach issues discovered at the original endoscopy that started this whole saga and fixing the stomach problems will be the answer. But since it was still an issue, my doc wasn't fully comfortable sending me home Saturday, so we waited until Sunday to see if my pain would go down and if I could eat anything. Seth brought Tobie to me Saturday night so I could see her and feed her and that was the first time I'd seen her since Wednesday. Finally, Sunday morning I was allowed home.

I'm seeing my doc this afternoon to talk about next steps, but mostly, I just want to sleep. I feel like I haven't slept in days, even though pretty much all I *did* was sleep while I was in the hospital!

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In the United States, today is Father's Day. It's a Hallmark holiday, like mother's day and grandparent's day, and secretaries' day, etc., but it's still something I take note of, not because Hallmark needs my business, but because there are two wonderful fathers in my life.

My life as a child was punctuated by my father's long absences - he was out to sea a lot, later on submarines, and when I was 7, he spent 13 months in Diego Garcia while my mother stayed in Spain with the two kids. We saw him once during his 13 month tour-of-duty in the middle of the Indian Ocean. Even when we moved back stateside, it seemed he was gone more than he was home - either working late, pursuing a degree in the evenings, or on work travel. But my father was still the center of my universe in that special way that fathers and daughters seem to share deep bonds, no matter the circumstances.

No matter where in the world he was on my birthday, I always got a bouquet of carnations (later roses) - one flower for each year I'd been alive (as I got into my teen years, I got sweetheart roses instead of full sized roses!). As an adult, I realize that my mother was probably the mover and shaker who ensured the flowers were delivered at the right time in the right place, but as a child, Daddy was at the heart of it from my view of the world.

As I've grown older, my father is further away (having retired to Florida), but our relationship is closer than ever. We speak several times a week, email frequently, trade pictures of our adventures, and turn to each other when we need to. He's young, but his health betrays him frequently and I worry about him in a way that I had hoped never to worry about him. He's one of the first people I call when I need advice, he's one of the people I share my joys with. I call him when I'm frustrated, happy, depressed, or overjoyed, and if I don't check in, he calls me to make sure we're okay at ChezPerky.

But above all, I love him for the diapers he sends for the kids every month.

(Okay, just kidding - I love him for all the right reasons, but the diapers are a huge bonus.)

My father isn't the only father I look up to and respect in this world. My husband is the greatest father and partner I could ask for to team with to raise our beautiful and bountiful family. He takes care of me like a queen, but takes care of the kids just as well. We have a challenging family dynamic - ADHD foster son, toddler triplets, and a newborn, but Seth takes it on with a smile on his face and genuine enjoyment of our beautiful children. He hasn't complained once about having been saddled with all five (5!) children since I got admitted to the hospital Wednesday night - he handles it with a grace even I do not possess.

He finds joy in each one of our children, and shares that joy with me whenever possible. He is actively engaged in their lives, an equal participant in their lives, and a strong perfect role model to them for the future. I know, without question, that our daughters (and sons) will have the same deep bond with Seth that I have with my own father, and I couldn't ask for better.

I love you honey. I can't think of anyone I'd rather spend my life raising our family with.


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