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Happy Birthday, Tobie!

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

My team is 1/3 of the way toward meeting our March of Dimes March for Babies fundraising goal. We need your help to support this important organization. CLICK HERE TO DONATE OR SIGN UP TO WALK WITH US.

Many of you know about the great work and research that is supported by the March of Dimes. This year, the March of Dimes is celebrating its 75th Anniversary. Founded by Franklin Roosevelt in 1938 to find a cure for Polio, the March of Dimes succeeded in its original mission, and since then has focused on finding the cause of prematurity and elimating birth defects. The March of Dimes is working toward a world in which all babies are born healthy.

All four of our beautiful and miraculous children were born premature. We were lucky to have generally good outcomes, but much of the medical science that kept my babies healthy before and after birth came from research supported by the March of Dimes. We are indebted to the March of Dimes and feel strongly about giving back to this wonderful organization.

With that in mind, our family will be walking in the annual March for Babies event on April 25th. Please consider supporting our fundraising efforts for this important and valuable organization.

Please help by donating or signing up to walk today!

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

Update on ChezPerky

I’ve been pretty lousy about updating, but I should get back to it, so as usual, I’ll just dive right in.

My health hasn’t improved significantly, but it hasn’t gotten significantly worse, either.  I’ll take status quo.

Sam’s ASD diagnosis has solidified, but he’s doing really well and we’ve got a great support team.  He’s adorable and sweet, and we know he’ll do well in the long run.  We’ve been struggling a bit with his ADHD medications, which has actually not been a bad thing, because it gave his teachers an opportunity to see behaviors that we knew were there, but they didn’t.  It strengthened our argument at our IEP Planning meeting, so it ended up being good timing.  Lemonade out of lemons, or some such thing.  We are so lucky to have an amazing support structure in place for him and I couldn’t ask for a better kid, to be honest.  He’s sweet and kind, and full of love.  I wish we understood a little better what’s going on in his head, but who doesn’t wish that of their kids anyway?

Ellie is such a gem.  She’s excited to learn, wants to please everyone, and she’s generous and is extremely attached to Mommy and Daddy. She’s in the same Pre-K class with Abby, but had over a week in school without Abby when Abby was sick and THRIVED.  She was so excited to tell us all about everything that she did in school those days:  “Guess what I did in school WITHOUT ABBY Today!?” and “I had such a good time at school WITHOUT ABBY!” etc.  Uh, suffice it to say, we’ll be separating the girls’ classrooms next year!

Abby is also adorable.  She’s independent and unique, loves to make cards and pictures for people and is turning into quite the little artist (well, by a five year old’s standard…).  She just got diagnosed with “primary generalized epilepsy – absence type” because she’s been having pretty obvious absence seizures for over a year, but in the last few months, they’ve been occurring so frequently that they’re starting to interfere with her ability to make it through activities (at *least* 8-12 per day).  The neurologist was able to give  adfinitive diagnosis without an EEG (though we’ll still be doing an EEG) by provoking seizures in the office.  Apparently, you can provoke absence seizures by inducing hyperventilation (in a kid who’s already getting them).  Sure enough, she had three seizures right there in the office.  I didn’t love the doctor, but the PA was fantastic.  Another bit of our little adventure, right?  At least we’re never bored!

Tobie is simply precious.  And precocious.  She loves to dress up and pretend and have princess tea parties.  She likes do “Dance with my Daddy” whenever she can.  She’s snuggly and sweet and far too smart for her own good.  She’s also extremely opinionated.  She’s adorable and she knows it, which isn’t great.  She doesn’t like to settle for anything less than exactly what she wants, which is becoming quite a challenge.  Truthfully, she mostly gets what she wants- she’s pretty spoiled, I admit, but if you could see her and be around her, you’d know why!  She’s hard to resist.  Even my nanny who is VERY no nonsense (in a good, and loving, way) has a soft spot for Tobie.

Seth’s still working out of state and doing well with it, but we miss him.  His contract goes through June, and we don’t know what we’ll be doing after that, but I’m sure we’ll work it out.

Hopefully I’ll be better about updating from this point on so that I can update about real things instead of just catching up all the time.

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Diving back in

I haven’t been blogging for a long time – and I’m not sure whether I’m ready to dive back in or not. Nevertheless, something’s been nagging at me for months about it, but I haven’t had the energy for it. So I’ll give this a try and see where it goes. I expect a large number of entries will be password protected. The password hasn’t changed, but if you need it, email me. Note that with the exception of my husband, if you are an immediate relative, I probably won’t give it to you.

So… catching up.

Well, first the kids: The triplets are at what I consider a very trying age. Actually, it might only be Ellie who is at a very trying age. They just turned five, the whole world is ahead of them, they are learning at an incredibly rapid rate, but social skills allude Sam and plague Ellie. Abby is a naturally gifted socialite and I have no idea where that skill comes from. Not from me, that’s for sure. I worry about Ellie. She whines all the time. She shrieks. She is prone to bouts of hysterical tears – frequently. I am worried about her social development. None of the kids in her class like her (though they all adore Abby). She is frequently in tears over social issues. When she and Abby went on a playdate, I asked her if she had fun and she said “No. C and A were playing together so I couldn’t play with them.” While I don’t know C very well, I know Abby very well, and I find it unlikely that it was entirely about C & A excluding Ellie explicitly. I’m fairly certain that Ellie doesn’t know how to integrate herself into a play group dynamic of more than 2 kids. This is a frequent complaint of hers. “Well, Abby and Tobie were playing together but *I* wanted to play with Abby and I couldn’t!” is a very frequent (and tearful) complaint I hear from Ellie. I am, I admit, puzzled about the next steps for helping her through this. So I’m calling in the cavalry. I’m talking to Developmental Pediatrician Extraordinaire (DPE) tomorrow, and have a message in to the school director. Hoping to have some strategies soon.

The other kids are great. Abby draws incessantly and constantly provides me with portraits of me (if my scanner were working, I’d post an example!). Sam is thriving in the collaborative classroom that he’s in this year. He loves his teacher, but is still wary of the fact that she’s “new” – as opposed to the teacher he had the past two years. Tobie is amazing. I can’t get over her extraordinary gifts. She’s smart, funny, and interactive in a way the triplets never were at her age. I’m sure some of it comes from having older siblings, but some of it is clearly just that she’s a very different kid.

How’s the Husband Extraordinaire Doing?: Seth’s great. He started working in North Carolina in July on a year-long contract. He’s working hard, but we miss him. He leaves every Sunday afternoon and comes home late Thursday night. The job is great, but it’s hard on the kids (and me) to have him gone every week. Still, it’s a fantastic opportunity and it’s giving him some time to figure out the long-term career things he needs to figure out, without worrying in the meantime about a steady income. This week he’s in Vegas at his Annual Mid-Year conference for his field. I hope he’s having fun, because we sure miss him!

And, inevitably, me: My health hasn’t been great since I last posted. I’ve been in and out and in and back out of the hospital several times since I last wrote. I have a number of things to say about the specifics, but I’m exhausted so I think the specifics will wait for their own blog post. Nevertheless, I did get the Gastric Neurostimulator placed in October – I wish I could say it’s been miraculous, but it has not. More details later, but the good news is that I’m currently home, not in the hospital, which is a huge improvement and a great gift that I should not underestimate.

And you? How are you all doing?

Re-emerging

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!

And He’s Off…!

This morning, Seth finished packing, 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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