An open letter to "the counselors"

Hi guys. How are you all doing? I know. It's been a terrible three weeks for you guys. It's madness-four campers lost in under three weeks? If I, as a parent, who didn't even know them, is reeling, I cannot imagine what you guys are going through.

I know that there was another letter like this written to you guys, but I think the more you hear it, the better.

Do you have any idea? Any at all? How you have changed not only Dovi's life, but our entire family's? FD is a terrible, fatal, insidious disease. FD takes over not only the body of the affected child, but the heart and soul of the parents. I would literally do anything, anything at all in the entire world to take a small amount of Dovi's daily suffering. But Dovi always has a smile on his face. He has joy and simchas hachaim. And I truly, in my heart of hearts, believe that a large amount of that joy comes directly from you.

You have given Dovi back his childhood and us back our lives. We have amazing help and support from our family and friends, but this is just different. When Dovi goes away with you, whether to camp or on a trip, we know that not only is Dovi safe, he will have an amazing time and most probably not want to come home. You've taught him to scream "FD Drools" and to respond "I have F......D!" like it's the best thing in the world. You've given him pride in who he is and helped him cultivate his most meaningful relationships.

You come and visit us in far away Chicago and are infinitely patient with our other kids. You make them feel like a million bucks and like they are special-look at all these guys who love them! Who play with them! They are special because of Dovi's FD.

I said at Dovi's Bar Mitzvah that because of Dovi having FD we have met people that we would have never met. I was talking mostly about you guys and the life and joy that you have brought into our lives.

You have changed our lives. You have brought joy and brightness where there is darkness. You cannot imagine the impact that each and every one of you have on us.

I know it's hard. I cannot wait to hand Dovi off tomorrow and get a break from the endless meds, treatments, and feedings. I do it with love because Dovi is my son. You do it with love by choice. This is how you choose to spend your vacations, your free time, and your days. It truly boggles my mind. When I was you age, well when I was all your age Dovi was 3, so let's backtrack to when I was in high school, I was spending my days at the mall and chatting on the phone. What you do by choice has changed our lives.

I know that sometimes it becomes unbearable, when a child is lost. And you guys have been hit four times now in three weeks. It's hard, so hard. I cannot imagine dealing with this at your age. It must be tempting sometimes to walk away, to protect yourselves from the pain. I would. It's unfathomable. But know, please, in your heart of hearts know, that what you have done for Dovi, for our family, for all the kids and their families is the most wonderful gift you can give a suffering family.

Our appreciation and respect for all of you is boundless. Thank you from the bottom of our hearts.

Just Waiting...

For the doctors to round and then we are outta here!

Waiting

Waiting

Waiting

On the Upswing!

Yay!!

Dovi is doing

A
W
E
S
O
M
E

His adorable, cute personality is totally back.

He's down to 2 liters of oxygen. he's going to sleep on his home settings of his BiPap tonight and then we'll see what's what tomorrow.

Yay!!

My only concern is what we are going to do when we go home and have to give up the beloved Playstation-Dovi might refuse to leave!

But seriously, he's looking good. I didn't realize how BAD he looked at the beginning of last week compared to how GOOD he looks now.

Here's to a good night (and a Blackhawks win!)

Hey Everyone!

Dovi is doing AWESOME!

He's been off the BiPap since 10 am and is rocking the nasal canula (can that be done?) He's currently sitting on a chair playing Playstation.

I'm waiting for Benjie to come here and then I'll head home to the other little stinkers.

Hooray for happy lungs.

Thank You

I have to say thank you.

I am overwhelmed by the sheer volume of the offers of help that we have received.

If I took a meal from each person who offered, we wouldn't have to cook for at least 2 months. For that I thank you.

If I let every person who offered to take my kids have a turn, I could vacation in Aruba for a few weeks without incurring any childcare costs. For that I thank you.

For the calls, the emails, the texts. The outpouring of love and caring. For that I thank you.

Just knowing that so many people care and want to help fills my heart when it is breaking for Dovi. For that I thank you.

I know I keep telling everyone that offers something that we are fine. Just know that I appreciate more than you can imagine each and every one of those offers. You get s'char (reward) for that.

Thank G-d, we're hanging in there and getting it all done. Benjie's home with the kids who were thrilled to have him home. I'm here with a Dovi who had an awesome day off of BiPap and is now sleeping on the BiPap (as he always does, albeit on much higher settings and much higher oxygen). The paint has been chosen, lights purchased, and carpet picked. The carpet guys are coming to measure tomorrow.

We're getting there. Mostly because of all of you.

This is how we roll

BiPap breathing for you and the Blackhawks game on the Slingbox (thank you David and Rochie!)


Seriously though, Dovi's about the same. He's been on BiPap on pretty high settings all day with quite a bit of oxygen. Don't freak out, everyone. I have no concerns about him having a full recovery. What I have concerns about is the long term implications of this nasty pneumonia. His lungs are bound to suffer some pretty severe scarring from such a nasty pneumonia. I fear that this means that every time he gets a cold, he'll end up on BiPap. Yuck.

I've been saying that I hope that we'll be home for the weekend. Now I'm hoping for Monday.

I'm tired.

Admission

So they decided that they wanted to admit Dovi. The only problem was that the hospital we were at does not allow patients on BiPap on the regular floor-they want them in the ICU. And there is no PICU at that hospital. Which meant that we needed to move over to the Children's Hospital. But we couldn't just hop in our car and drive over-by this point, Dovi was on 3 liters of oxygen to keep his oxygen levels up. So they decided that we needed to go on medical transport.

But they also wanted us to bring our BiPap from home to check the settings. Don't forget, it was 9:30 on Friday night (Shabbos) and we were waiting for medical transport to move our son who has pneumonia and FD who had just become nonresponsive over to Children's. So I did what any intelligent parent would do. I hopped in my car and drove home to get the BiPap. While I was there, I also grabbed a bunch of food for Benjie and some pjs for him. I drove back to the ER and we waited for the transport, which came about 30 minutes after I got back. Good thing I did what I did, because a taxi would have taken way too long and I would have missed them.

The transport team got Dovi and Benjie and went over to Children's. I called a taxi then to go home or wherever my other children were. Don't forget, Shana had seen the whole event occur earlier and I had no clue how she was doing. So the taxi dropped me off at my in laws house. I knocked on their door and found out that my brother in law and sister in law had taken Elisha, Shana, and Jakie back to their house. So I strolled over there. I knocked on their door. And knocked. And knocked some more. And no one heard me. So I walked home and went to sleep. What else was I supposed to do? I was afraid that I was going to sleep until noon, though-I was the only one in my pitch black, quiet house. So I slept with the curtains open...luckily I woke up at about 9 am and went over to my brother in laws-and found my happy little kids getting ready for shul. I cannot believe that Shana seems to be totally fine.

I spent the day with the kids at good friends and they took good care of me. Benjie and Dovi chilled at Children's. After Shabbos, another good friend took me to get my car from the ER parking lot and I went to Children's to see my boy, who looked pretty good, even while he was sound asleep. Another good friend brought us pizza, and Benjie and I hung out for a while until I went home.

Next up, Sunday.

The story...

So I kept Dovi home from school on Friday because he was a bit crisisy...not terrible, just vaguely off. A little retchy, a very low grade fever. I was home doing the great clothing switchover (all moms know what I'm talking about, and it was majorly compounded by the fact that my house is a bomb right now due to the basement. I said on Friday morning that my house really, truly looked like an episode of Hoarders)

Friday at about 6 pm we went to my in-laws for Shabbos dinner. I dropped Benjie, Elisha, and Jakie at shul and took Dovi and Shana over to the house to wait for them. Shana was reading a book. So was I, and Dovi was laying on the couch next to me with his head on a small pillow. He was coughing, and I told him to give a good cough and clear his throat. I realized that he wasn't answering me.

I looked over and saw that he was dusky in color and his eyes were rolled back in his head. I started screaming and yelling at him to wake up and sat him up. When I realized that he wasn't responding to me, I screamed (ok shrieked hysterically) up to my mother in law to come down and call 911. He was breathing, but very erratically and not responding. I'm not going to tell you what I was thinking. I literally slapped him in the face three times to try and get him to come back. 911 told me the paramedics were on the way and to lay him on his side. I did so and he gave a big shuddering cough and woke up, crying and upset.

My mother in law and Shana had run to shul to get Benjie. About a minute later the paramedics came and checked him out. His blood pressure was really high (160/120) but his oxygen levels were ok. I called Dr. Axelrod and she told us to take him in. At this point Benjie ran in the door (he told me he was really confused because he thought Dovi was nonresponsive and came back and found Dovi standing in the window). Since he seemed to be stable we didn't go in the ambulance to the ER because they would only take us to the closest ER and we did not want to go there.

So Benjie and I hopped in the car and went to the ER that we've always gone to. We stopped at home and grabbed insurance cards and Refoenu cards. The ER was expecting us because the paramedics called ahead and we went right in. They took blood and a chest xray and established that he had pneumonia. They decided that he needed to be admitted. And this is when it got interesting...

He's OK

I'll start with that.

I don't have much time to write now but Dovi has a bad pneumonia that caused him to lose consciousness on Friday evening. He's in the PICU now on 4 liters of oxygen.

He's OK. He's watching the Blackhawks game now. Really, he's going to be fine.

But he could use tefillos. Chaim Dov ben Sorah Yehudis.

I'll write more when I get home.

When was the last time you had this serviced?

So most of you know that Dovi sleeps on BiPap. For those who don't, BiPap stands for BiLateral Positive Airway Pressure. A BiPap machine forces air into your lungs. It's used for sleep apnea, which Dovi kind of has.


Ooh check out this snazzy drawing. I did not do it. Lifted it from the lovely internet. But that's exactly what Dovi looks like at night. Except he's cuter.

He also uses 1 liter of oxygen with the BiPap. Why all these lovely devices, you may ask? Well kids with FD have a very bad habit of going to sleep and not waking up. Yes. Not waking up. The leading cause of death (at least it seems to me over the last few years in FDland) is just that. Going to sleep and not waking up. Yes, FD sucks. Don't say I didn't tell you so. Big time sucks. So we do everything in our power to hedge our bets. We have BiPap. We have oxygen. We have a pulse ox right there. We have a blood pressure monitor. We have a nurse at night, both to give him his feeds and meds, and to make sure that he keeps his BiPap and oxygen on. Because he has a naughty habit of unhooking himself. (Case in point, 3 am last night when he took it off).

So.

After that lovely, depressing paragraph, give you the somewhat entertaining source for the title of this post.

A few weeks ago, Dovi's BiPap was acting a little squirrly one night. So I called home health. THe respiratory therapist on call got us straightened out, but a few days later, we got a call from home health that they needed to "come and download the data" from the BiPap. Umm huh? Dovi's had the BiPap for I think two or three years. Hang on, I'll go find out...ok I looked it up in old posts. He got his BiPap in the summer of 2008. So 2 years. And never once have we heard from home health about "coming to download the data".

So we figured out a a time and the guy came today.

He downloaded data. And then he asked: "When is the last time you changed the filter?"

I said: "The BiPap has a filter?"

Then I told him that no one had ever come out to service us. He was horrified. And got a new filter. And showed me the old one. It could not have been healthy for Dovi to have that BLACK moldy filter in his BiPap. Vomit.

Then he asked me how often we change the BiPap mask. Umm never?

So he gave us a new, smaller one to try out. Dovi flatly refused. I need to call tomorrow to get another one of his big honking masks. Little weirdo. But then again you couldn't pay me to sleep on a BiPap and he's a good little trooper.

Most of the time.

But seriously. Two years? No service? How was I to know? Oops.

OK I find this funny. But in the rereading, it seems more pathetic and depressing than funny. Sorry.

School Strikes Again

While most of you are stressing about Pesach, I'm stressing about school.

I had/have THREE exams this week.

Anatomy Lab Exam this past Monday (rocked it)

Microbiology Exam tomorrow morning (expect to hopefully pull off a B. I despise memorizing algae and protozoa. So I'm not and hoping for the best...it's multiple choice)

Anatomy Exam on Thursday morning. Do not have enough time to study. Am freaking out. Will be nowhere near as prepared as the previous exam. Also hope for a B.

But I will be done with all the exams just in time to turn over my kitchen for Pesach...fun fun!

Thank G-d I have a LIST...

as a sidebar, Dovi is just fine. know that that blood pressure was insane and not good. But it's all part of the fun with FD and it went away just as quickly as it came. We know his blood pressure is high when he's all red and kinda puffy looking. Like he was again tonight, but I opted not to take his blood pressure. Gave him his meds and put him to bed...

Oh and by the way, everyone...nursing program acceptance letters go on on or before APRIL 1...which is NEXT WEEK! We all know that my letter will arrive on the first day of Pesach so as to maximize my stress.

You know you have a kid with FD when...

You take his blood pressure and it's 159/121 and your response is "hmm...interesting"

A Little Reminder

Lest we all forget what we're really doing here.

It occurs to me that my readership has grown recently. But it also occurs to me that Thank G-d, Dovi has been doing really well recently. So, at the moment, my blog that started out about the life and times of all things Dovi, has sort of turned into my blog about myself and my hobbies.

So I've decided to take a step back here and talk a bit about my Dovi.

For my newer readers, Dovi is my eldest son, who turns twelve next month (how is that at all possible?). He has Familial Dysautonomia, or FD for short. FD is one of the Jewish genetic diseases (Orthodox ladies who read Binah magazine, I've been told that there was an article about FD last month. I need to get a copy of it). Rewind back to high school biology class-FD is an autosomal recessive disease-which means that each parent needs to be an asymptomatic carrier of the disease. Remember the Punnett Square? Well Dovi is a little Punnett Square, being a aa, while Benjie and I are Aa. Remember that little square?

What is FD, you ask?

Well here you go.

FD affects the autonomic nervous system. Basically, the autonomic nervous system is not fully developed.

What does the autonomic nervous system do?

It controls all the things our bodies do automatically-blood pressure regulation, temperature regulation, and the suck/swallow reflex. In our bodies, these things happen automatically. In people with FD, they do not.

Additionally, people with FD have low muscle tone, they lack overflow tears, they lack taste buds, do not feel heat, cold, or pain, and have scoliosis.

Dovi has every single one of those symptoms.

He's on three different blood pressure medications. His temperature has hit 107 degrees. He could not successfully nurse or take a bottle as a baby. He has low muscle tone and cannot run well at all. He needs eye drops every few hours to keep his eyes moist-he has had horrible corneal abrasions in the past-his eyes have scarring over them and he's legally blind. He doesn't feel pain. He's broken his tibia three times and has not felt it. He's had scoliosis surgery twice and currently has the most beautiful posture ever, thanks to the titanium rods and about thirty screws in his spine.

People with FD also experience something called Dysautonomic Crisis. Some of my older readers might recall last winter when Dovi suffered through a Crisis for four days. Basically, when people with FD's bodies are stressed, their bodies experience something called a Crisis. In a Crisis, blood pressure skyrockets, the digestive system doesn't function, and retching ensues. It's really not pretty. It can take hours to days for a Crisis to abate; sometimes people who are in Crisis need to be hospitalized for IV medication to control the symptoms. Thank G-d Dovi has never had to be hospitalized-but Crisis is not pretty.

Basically, the bodies of people with FD just do not work correctly.

So that, on paper, is what Dovi is.

But what is Dovi in reality?

Dovi loves hockey, baseball, football, and basketball. Specifically, the Blackhawks, Bulls, Bears, and Cubs. Dovi loves fish sticks, cheesy bread, french fries and pizza. Dovi loves to see his friends at school, camp, and shul-and let me tell you, anyone who says 11 year old boys are mean hasn't met Dovi's friends. These boys will hug Dovi and do anything they can to help him. Dovi is a Wii scam artist. He loves music. His current favorite song is "Chaverim". He loves to call his counselors from Camp Simcha and chat with them. He literally strolls around the house, "Hey, Asher! What's up?". Dovi can't wait for his Bar Mitzvah and when he gets to put on Tefillin. Dovi loves to hang out with his brothers and sister and watch movies with them. Dovi wakes up at 6 am every morning ("it's my time!") and scoots himself downstairs to watch TV.

So, yes, Dovi does have FD.

But Dovi is not only FD.

He is so much more than that.

Say a Little Prayer...

So today we're leaving for Camp Simcha Special.

Please, everyone, say a prayer for us.

Swine Flu, while the epidemic is waning, is still very present, especially in the camps in New York.

Swine Flu, or H1N1, is a very, very bad thing for the FD population. It has not been a good summer in the FD community due to H1N1. It's been a very sad summer.

We're very nervous, but taking a leap and sending Dovi to camp.


We've decided that much of Dovi's physical health hinges on his emotional well being, and his emotional well being would take a huge hit by missing camp.

So Dovi's going to camp.

To quote a very wise friend of mine, we're doing the right thing for Dovi but the wrong thing for us as his parents.

He'll be there for 12 days.

Please, please, keep him in mind that he should stay healthy while at camp.

If you're Jewish, his Hebrew name is Chaim Dov ben Sorah Yehudis.
If you're not Jewish, please pray that Dovi P remains healthy at Camp.

Oy. It's going to be a long 12 days.

Ahem.

Don't Fight Me. You will. not. win.

I've edited out personal stuff-like phone numbers, ID numbers, and dates. So some sentances might be odd.

To Whom It May Concern:

This letter is regarding Joseph P’s oxygen needs.

Joseph has Familial Dysautonomia (FD), a rare genetic disease. FD is caused by dysfunction of the autonomic nervous system. The autonomic nervous system controls all involuntary body activities such as swallowing, temperature regulation, blood pressure regulation, and breathing. Because Joseph has FD, all of these activities are impacted.

When Joseph flies on an airplane, he has increased oxygen needs. When the cabin is pressurized on a plane, the oxygen in the air decreases, and your body’s autonomic nervous system sends a signal to the lungs to breath deeper to maintain adequate oxygen levels. Because Joseph’s autonomic nervous system does not function correctly, when the plane is pressurized, Joseph’s lungs do not get the signal to breath deeper. Without supplemental oxygen on a plane, Joseph will not take in enough oxygen. Within minutes, his body will not receive enough oxygen and he will go into respiratory distress, ultimately leading to death if supplemental oxygen is not administered. He cannot be off of the supplemental oxygen even for a few minutes-this will lead to respiratory distress almost immediately.

Joseph will be traveling to New York. He will be traveling from Chicago to New York to see his orthopedic surgeon, Dr. David Feldman, for a follow up appointment from his leg lengthening osteotomy and foot reconstruction surgery that was done in New York by Dr. Feldman at NYU hospital on XXXXXXX. It is medically necessary for Joseph to travel to New York to follow up with Dr. Feldman.

Therefore, we are requesting that XXXXXXXXXextend coverage to Joseph for the Sequal Eclipse Portable Oxygen Concetrator.

The Sequal Eclipse is the only airline approved oxygen concentrator that offers continuous oxygen flow versus breath triggered oxygen flow. This is important because Joseph’s body will not automatically breathe in without constant oxygen flow. Additionally, the Sequal Eclipse is portable. This is important because the oxygen which is rented from the airline is often tethered to the overhead compartment, thus making it unable to be moved. If the oxygen cannot be moved, Joseph is unable to use the bathroom facilities on the airplane without being detached from the oxygen. If Joseph is detached from the oxygen, even for a short time to use the facilities, he will turn blue and pass out.

Additionally, the Sequal Eclipse can be used at our destination overnight. Joseph is dependent on oxygen over night at a rate of one liter attached to his BiPap machine. Without the Sequal Eclipse, it would be necessary for Blue Cross to arrange oxygen rental in New York at additional cost to the company.

We are also requesting that Blue Cross extend coverage for the Sequal Eclipse to be used as our back up oxygen concentrator in the home instead of a large, non portable oxygen concentrator. Joseph currently utilizes liquid oxygen for home use, but requires a back up device to ensure ongoing oxygen services in case of liquid failure or leak.

The Sequal is an efficient, cost effective method of portable oxygen for Joseph. It is medically necessary for Joseph to receive coverage for the Sequal Eclipse.

Attached is additional information about Familial Dysautonomia and the Sequal Eclipse, as well as a prescription from Joseph’s primary care physician for the device.

If you have any questions, please feel free to contact me, Sara P, Joseph’s mother, at XXXXXXXXXX, Joseph’s PCP, XXXXXXXXX, at XXXXXXXXXX, or Joseph’s Familial Dysautonomia specialist, Dr. XXXXXXXX, at XXXXXXXXX.

Thank you very much for your prompt approval of this medically necessary device.

Sincerely,

Sara P

Ask Sara! Answer 5

Writer Girl asked...

I just want to know everything. I'm nosy that way. I really want to know, I guess, if I will ever stop hurting. You seem in such a good place. I want to know how you got there. Am I the only ortho chick who has MAJOR issues with God? I have a hard time believing that

Oy. Writer Girl. You really go for the sucker punch, dontcha?

You also give me way, way too much credit. Firstly, Dovi is six years older than your son. I've had a lot longer than you to come to terms with Dovi.

On Thursday, I had possibly the worst hour and half of my life. I attended the funeral of a 14 month old baby. A baby who never learned how to walk. He was a perfectly normal, healthy 14 month baby last Monday. Thursday, his parents had to bury him. It was the most awful experience I have ever had. And if it was unbearable for me, I cannot even begin to fathom what it was like for his parents.

All I could think about at the funeral was that there must be a plan. There has to be a plan. If there is no plan, there is absolutely no way whatsoever to survive the unimaginable. If there is no plan, how on earth can we live through the experiences that have no explanation?

So there must be a plan, dear Writer Girl.

The only problem is that we have not a clue what that plan is.

Dovi has FD. Dovi suffers, day in and day out from his disease. He wakes up every morning retching (imagine morning sickness every day of your life) and needs medication to be able to function. He struggles every moment of every day to communicate. He cannot eat correctly, walk correctly, talk correctly.

If I let myself, I would lose my mind trying to understand WHY G-d felt it necessary to make Dovi the way that he is.

What good can come from an innocent child suffering? For that matter, what good can come from anyone suffering?

I could spend all day, all my life seeking out answers and explanations.

But the bottom line is that there is neither an answer nor an explanation that you or I can understand.

There is absolutely nothing I can tell you that will suddenly make the clouds of uncertainty part and you will say, "Aha! now I understand. Now I get why 14 month old babies die, and kids have FD, and Sotos, and all types of really awful things. Now I understand why Chai Lifeline has to exist. Why people have to struggle and suffer"

I can't give that to you.

Benjie and I often speak about parents who suffer from what we call "HIS Syndrome". As in "Head In Sand Syndrome". Meaning: If I pretend really, really, really hard that my child is just fine, he will be just fine. I will not acknowledge that my child actually has something wrong with him or her, because as long as I do not acknowledge that problem, my child is "normal".

I suppose to some degree that I suffer from my own strain of HIS Syndrome.

I cannot understand. I cannot fathom. Therefore, I don't even try. I make no attempt to comprehend why on earth G-d decided to give a baby with FD to a couple of 20 year olds who had not even celebrated their first anniversary (as a sidebar, did I ever tell you guys we spent our first anniversary in Evanston Hospital getting Dovi's g-tube put in? My mom brought us Chinese food that we ate in the parent lounge of the NICU and the roses Benjie bought me sat at the nurses' station).

I cannot understand.

It is impossible.

Therefore, I don't. Maybe it's simplistic and I am not truly exploring the depth of my emotions and pain regarding the absolute havoc and suffering that Dovi's FD has wrought upon not only me, but my husband, other children, and family at large.

But I just stick my head in the sand and say "I don't get it. And I cannot get it. So I don't even try".

I guess another way to explain it is this: I get in my car and drive it. I do not understand, nor do I have any desire to understand, how it works. I just know that it does work. I get in, turn it on, and off we go (generally to Jewel to get free groceries but whatever).

But I really have not a clue how that car works. My mechanic does. And when I need it to get fixed, I take it to him, and he fixes it. It might cost me a lot of money, I may be inconvenienced to have it in the shop for a few days. But my mechanic does what he needs to do to get my car drivable again.

So too G-d. I don't understand how G-d makes the decisions that He does. Or how He "chooses" how things should happen. But just like my mechanic knows he needs to replace the belt in my engine to make my car run correctly, G-d knows what He needs to do to make my life, and the world at large, run correctly.

I don't understand why Dovi's illness improves the world. And you cannot tell me that Dovi's illness is some type of atonement for bad things that happen. Nothing makes me more irate than the opinion that a child's suffering atones for other sins in the world.

But what I CAN tell you is that Dovi's illness is somehow in integral part of the world at large.

That Dovi having FD is somehow part of the master plan.

One that I do not understand, never will understand, and make no effort to understand.

Dovi 's Saga...continued

We did decide to take Dovi out that night to dinner. We decided that, darn it, he was our baby, and we'd take him with us, even though he had a strange looking tube taped to his face that we really didn't 100% understand.

Once Dovi got his NG tube, things got soooo much easier. Rather than spend hours (literally) trying to get some food into him, we'd try for a bit and then give the rest of his feed through the NG tube. I once decided to spend the time and get Dovi to take all 2 ounces from his bottle. It literally took me 3 hours-and then it was time for his next feeding.

We also started the umpteen hours of OT, SLP, and PT that would begin to fill our rapidly diminishing hours of free time in the day. By the time Dovi was a few months old, we had 4 sessions every week of OT, PT, SLP, and developmental therapy. We kept very busy.

The speech therapists were at a loss. They could not figure out why he just couldn't get it together to coordinate eating. Every baby eats. Or so we thought. Dovi taught us quickly that that was not the case. Additionally, once Dovi was getting a full tummy, his then undiagnosed reflux kicked in. He spit up continuously-it got to the point that instead of using burp diapers, we used kitchen towels-they were able to hold more spit up.

But through it all, Dovi was the happiest, most content little guy. He slept beautifully (wouldn't you sleep nicely if someone fed you in your sleep? We used to get up at 3 am to give him an NG feeding-even though he didn't wake up!)

All of the metabolic testing came back negative. Aside from an abnormal EEG, they could not find anything wrong with Dovi. My pediatrician had not a clue what else to do-so she had us follow up with the neurologist.

Benjie and I took Dovi when he was about one month old to see the neurologist. He decided to do a tear production test on Dovi. You see, people with FD don't produce overflow tears (emotional tears when crying, or the tearing of the eye when, for example, you get sand in your eye). They also have diminished baseline tears (the tears that keep your eyes moist). The test involved sticking little pieces of special paper into Dovi's eyes and measuring the amount of moisture produced (the name for the test escapes me. It starts with a S). Dovi passed with flying colors. Yes, he did. So the neuro said that Dovi did not have FD, he may have some other undiagnosed illness, and told us to come back in another month to follow up. Hopefully many of his issues were from his being a tad early and everything would work itself out.

We were in that lovely grey area of "no diagnosis"

One month later I took Dovi back to the neurologist. Benjie didn't come with me-after all, we had ruled out that nasty neurological disease, so why should he take off of work?

The neurologist informed me that he had found "one more" test for that Jewish Genetic Disease, FD. It seemed that people with FD did not have a normal reaction to histamine. So he wanted to perform what is called a histamine test. Anyone who had taken their kid for allergy testing knows that I'm talking about-the "control" reaction in allergy testing? Yup, that's what they were doing. So he did this test. Benjie was not with me. It was a Friday afternoon. He did the test, looked at me, and said "Mrs. P, your son has Familial Dysautonomia". He gave me the contact information for the Dysautonomia Treatment and Evaluation Center in New York, told us to make an appointment, and sent me on my way.

But you see, I knew already in my heart of hearts that Dovi had FD. After the neurologist had mentioned FD to me in our first visit, I went to my mom's house and used her computer. She had this cool thing called the internet. I did a search (in alta vista maybe? remember it? before google took over our loves and our speech) for FD, and found the FD Foundation. I went to their website. I read about FD. I knew right then and there that Dovi had it. He had every. single. symptom. of FD. He's textbook. But for that month, I clung to the neurologist's negative diagnosis from the tear test. But I knew. C'mon. It was obvious.

And here's the thing-bizarre as it sounds, the diagnosis was comforting. No, no, being told at age 20 (today's my birthday! I'm 32!) that their child has a deadly disease is not comforting. But I always say that I can do anything with a plan (note my extreme and inappropriate use of Excel spreadsheets). Without a diagnosis, there is no plan. You flounder forward, treating issues as they come up.

But without knowing the real cause of the symptoms? There is no plan. Ask any parent of a child with special needs and no diagnosis. Half the struggle is the not knowing.

So now we had a plan.

It Occured to Me

That I have spoken very little about Dovi's early childhood-how he was diagnosed, etc. etc.

So I figure why not.

Dovi was born at 36 weeks gestation. I was induced because he wasn't moving around as much as he should have (decreased fetal movement), and because I was having small contractions and with every contraction his heart beat dipped.

I still remember what my Ob/Gyn said to me before she sent me home to get my bag and meet Benjie: "I just think he'll be safer outside of you than inside you."

So I went home to pack my stuff pick up my stuff and meet Benjie. We left for the hospital with a quick stop at Baskin Robbins for a Cappuccino Blast. Something funny-they were new in 1997 and a big thing. So we got one. The pink plastic spoon from that Cappuccino Blast is still in my dairy silverware drawer, 11 years later. Well the bottom of it-the spoon part got lost in a move. But that pink plastic handle isn't going ANYWHERE :)

After a fairly uneventful labor I had a fairly uneventful birth. Dovi was born at 7:31am on Thursday, November 13, 1997, weighing 5 pounds 1/2 ounce. After what I thought was a fairly uneventful 24 hours in the hospital I chose to go home in time for Shabbos.

I was 20. Benjie was 20. This was our first baby.

I thought it was normal that he didn't really nurse well-babies need to learn, right?

I thought that it was normal for babies to be like limp little rag dolls.

I didn't know how many wet diapers he needed.

I didn't know babies aren't supposed to sleep 22 hours a day.

Remember, why on earth would I have thought to look for something to be wrong? After all, everyone has healthy babies, right?

Not right.

Since I left the hospital at 24 hours post partum, a home health nurse came on Saturday to check on him. She was not pleased. He hadn't really eaten well, and he wasn't having enough wet diapers. She also said he looked a little jaundiced. She recommended that we try and give him some bottles (it's easier to give a bottle-you can see what they've eaten), and take him to the pediatrician on Monday to check on the jaundice.

I still remember what my pediatrician said on Monday morning:

"I don't particularly care about his jaundice. I care about his muscle tone"

And thus it began.

At a time when most mothers are staying home cuddling their new baby, Benjie and I were taking Dovi to the neurologist. Who was not happy either.

The first thing he did was admit us to the hospital. The thought process being that he needed tons of tests-and it would be easier to just do them all inpatient. I still remember a few things. Dovi wore a bright green (this was 1997) thermal one piece outfit with Tigger on the front. The room had pastel colors. There was a mother pulling her 1 year old daughter in a wagon down the hall as we were being admitted. She had no hair.

They did tests. Lactation consultants came.

"Don't worry, he'll learn. He was early. The suck/swallow reflex doesn't always come in until 37/38 weeks. All babies learn how to eat. Just be patient."

So we were patient. Somehow Dovi choked down enough to survive.

After tons and tons of tests over a few days, we were sent home.

The hypothesis was that he had some type of metabolic issue that could hopefully be treated with medication. But the blood had to be sent to Denver. And would take a few weeks to be cultured. So we were sent home.

We waited.


We saw the neurologist again. Lucky for us, he had done some residency at NYU, and had heard of this obscure Jewish genetic disease called Familial Dysautonomia or some such thing. Which had no test because the gene had not been found. But he didn't think Dovi had it. But he wanted to keep it on the back burner in case the metabolic idea didn't pan out.

We went for weight checks.

Dovi was not gaining.

His bris got pushed off. Not because he was jaundiced (which he was and needed bililights, the first of many medical equipment deliveries that came to our home) but because he was not 5 pounds. He was born at 5 pounds 1/2 an ounce and it took him almost 2 weeks to get back up to 5 pounds.

The day after his bris, it was decided that he needed an NG tube, a feeding tube threaded from his nose, down this throat, into his stomach. It was temporary-"until his suck/swallow came in". It was the night before Thanksgiving. A home health nurse came to our house, placed the NG tube, showed us how to use it, and left us to our own devices. 99% of people are admitted to the hospital when getting an NG tube. To this day I have not a clue why on earth we were not.

Benjie and I debated if we should take Dovi out to the planned family dinner in a restaurant for Thanksgiving with the NG tube. What if someone sees him?

We took him.

More tomorrow.

Hang On...It's Going to Be a Wild Ride...

I'm back.

I cannot believe I took off two weeks from blogging! I must say that I tip my hat to all SAHMs who blog...I have no idea how you find the time!

Pesach was great. Hectic but great. I have a bunch of posts to write, but first I need to update you all on the upcoming few weeks.

As I've written previously, Dovi is having surgery on his left leg. And his big toe, as he makes sure to remind us every time-I'm not sure why it excites him so much that he's getting the growth plate in his big toe fixed but as long as he's happy, I'm happy.

Dr. Feldman felt pity on us and the madness that is our lives and is currently planning on combining both surgeries into one longer surgery on Monday, April 27.

Yes, that's one week from today.

I'm nowhere near ready.

Remember my panic this past summer trying to get Dovi ready for camp? And my lists and craziness?

Umm...yeah.

So today begins the great push to move to New York for two weeks.

Yes, you read that right. Dovi's surgery is Monday. We're going on Sunday, April 26. My return ticket? Monday, May 11.

No, I'm not panicking. At all. OK, only a little.

Dovi is not going to be in the hospital for two whole weeks. We think. We think (notice my generous use of italics) that he will be in the hospital for three-four days. But this is Dovi. This is the kid that ended up spending three weeks inpatient post scoliosis surgery in 2007. And needed a second surgery six months later. And contracted MRSA in his wound. And had his wound open up. And cannot use dissolving stitches anymore because they don't seem to hold his wounds closed, and then, y'know, he contracts MRSA. And needs IV antibiotics for four weeks. In New Jersey. Over Pesach 2005. Yes, we spent Pesach four years ago in Teaneck in my brother's house (They weren't there. They went to my mom in Philadelphia. Speaking of which, family members that read this, why didn't you all just move the family Pesach to Teaneck that year? Remind me what the story was).

So.

I plan on being in the Tri State area for about two weeks.

And I have

1. three other kids
2. a job
3. a home
4. three other kids
5. a job
6. a home
7. no nanny this time around

Should be interesting.

What I also have is

1. three kids who are in school 8 hours per day
2. a job that recently cut me to ten hours per week (darned economy. darned recession. once this whole surgery inconvenience is over I need a new job.)
3. a helpful husband to deal with said home
4. A mom who is coming in from Sunday night until Thursday morning to care for said three other kids
5. A mother in law and sister in law who are very generous with their time to help care for said three other kids after my mom leaves
   
6. Many friends and family, both in Chicago and in New York/New Jersey, that have offered to help.
   

So here's to hoping that it will all work out.

Many lists need to be written and phone calls have to be made.

Much planning.

Much organization.

You all know I'm good at that.

It's not the actual doing, it's the lack of lists that do me in.

I'll be busy in Excel this afternoon. Just for entertainment, I might share my list once I'm done. Don't run away screaming.

Tuesday

Soooo....here we go.

Tuesday.

Our flight was at 9:40am. Here's what I have to say.

Sequel Eclipse Personal, Portable, Airline Approved Oxygen Concentrator???


Life changing.

Seriously, honestly, life changing.

We flew Jet Blue. That is something that we have never been able to do before. The "low cost" airlines do not offer green tank oxygen rental. Jet Blue? Divine. Nothing, and I say nothing, beats individual in flight Direct TV. Dovi was happy (Noggin). I was happy (HGTV). Benjie was happy (ESPN).

Back to the Sequel Eclipse. So lovely! Easy! Discreet! It was super fabulous. We simply rolled it on and turned it on, and off we flew.

Landed at 12:45, then walked no less than one mile from the gate to get our rental car. It took for-freaking-ever.

On the way to the 2:30 doctor appointment, we called Raphi for emergency provisions. He volunteers at Sloan on Tuesdays. Chai Lifeline puts out a lunch spread at Sloan on Tuesdays. He stole took some wraps from Sloan and brought them to NYU for us.

Dovi's appointment went well. Frankly, we know nothing more today than we did on Monday. They do a whole long exam and then we get a whole long letter with recommendations. It turns out that the D had an ear infection so he started Augmentin. I personally think that whenever he flies his ears look infect-y. But it sure isn't hurting him.

Then we left NYU and scooted over to Walgreens to pick up a prescription that was forgotten in Chicago. Tragically, a coupon for a gift card with transferred prescription was forgotten as well.

Then, the real fun began. We drove. Correction: we inched to Far Rockaway. My sister lives there (well she lives in Bayswater but no one ever knows where it is) and we were staying there that night. I needed to meet one of the cutest, spittiest babies ever, my nephew Yitzie. He spits. A lot. But luckily he is very cute.

We decided to go out to dinner. At the King David Deli, which is owned by a Camp Simcha Special counselor. But we also decided to see if any counselors could come too. They did. This is what ensued.
Everyone at dinner. Guy in front? Eli, the owner of the extremely elite King David Deli.
Headband girl/bald guy behind her? My twin sister Rebecca and her hubby Nahum. Gaggle of little boys behind them? My cutie nephews, AKA The Boys in the White Shirts. Except they weren't wearing white shirts. Those who get the joke are amused. Three guys? Asher, Sammy, and Hudi, respectively. Sammy got back from Israel that morning and came and joined us! We were happy. I'm sure his mother was not. But she might have been knee deep in his laundry anyways.

Same picture, but with me.

Dovi and Hudi. Think he looks a tad happy?

Yes. That's a large slice of tomato in Hudi's mouth.

After dinner, dancing. In the restaurant. The video of this is at the bottom.


My nephews liked Asher. A lot. It might have been the White Shirt connection. If the water pitcher was not there, you could see my nephew Akiva attacking Asher. There was something involving Asher's Ranger's scarf. And wrapping it around necks. Who knows.

Additionally, it was Asher's birthday. He's 19. I'm almost double his age. I could be his mother. I am old. But I digress. When you are at Camp Simcha, and it is your birthday, or your counselor's birthday, or your rotator's birthday, or your 15th cousin 28 times removed birthday, or you simply want to, you do this.

You sing. Don't ask me why Asher had a light saber.
Then you wait for your counselor to blow out the candles. Then you take the cake

ever so carefully. And smash it into your counselor's face.

as hard as you can.

Everyone laughs.

You hug.

And then you find some leftover french fries on someone else's plate to eat.

Then you dance. In a restaurant.






And a successful Tuesday comes to a close.