Monday, November 19, 2012

In the Middle

My husband Matt and I are both the middle child in our families.  A unique position.  Not the first born.  Not the baby of the family.  Jacob will be a middle child as well.  The little brother, the big brother.  Someone to care for him and someone for him to care for.  

Baby Aiden is due on the 26th of December.  He is Jacob's baby because Jacob said he will sleep next to the baby in his bunk bed and he will feed the baby.  He said the baby will ride with him in his Gator.  I said the baby will need Jacob's diapers so Jacob will need to use the potty...  

If not for Jacob's hemispherectomy surgery two years ago December 22nd, we would not be expecting Aiden.  I would not have had another child if Jacob had not made significant progress.

My baby is a boy.  As he grows, the scar circling his ear becomes smaller and smaller.  A mark of his rebirth.  A reminder of a past life.  We live blissfully in seizure freedom.  

Saturday, October 20, 2012


My husband sent his first teacher email.  I told him, "You know there's a problem when Daddy gets involved!"  Daddy is always involved but usually I'm the only one getting fired up.  Matthew has to keep a weekly Reading Journal, which we objected to at first because we like to do things the way we do things.  We don't like mandates.  But with some motivation from Nana, we decided to make an effort.  This past week, Matt and Nana read lots of books with Matthew.  So we were surprised when the Reading Journal came home and there was a post it note inside that read, "Sorry.  Matthew did not take his Reading Journal out of his folder."  What!?  I asked Matthew why and he said that the teacher takes the Journal out.  And obviously she did to place the sticky note.  Then I asked about the volunteers who come in to log his reading. "They didn't call my name.  Maybe they did when I was getting on the bus."  Poor baby.  My boy is not the most compliant child BUT he does understand social norms and knows how to behave in a school.  There is no way that Matthew purposefully did not take out his Reading Journal.  Why?  Because he has pride in what he does and what his family does with him.  I'm sure I sound like an idiot.  I have said it before, that I over react, that I am a little dramatic, but seriously... Sorry we left your child out and didn't acknowledge that he and his Daddy and his Nana worked very hard with him, but it's HIS fault.  Not mine.  Because he is 5 and I am 55.  And I am always right because I am the teacher.

Not on our watch.  She also sent a paper home with "x's" and a "-2" with a note that said to correct the work with a parent.  Matthew was supposed to color squares or circles according to the number written below each exercise.  For one of the numbers, the teacher wrote that there were too many shapes colored in and that you should always count twice. For the other number, she wrote that there were too few shapes shaded.  I applied my own teacher eye to the exercise and counted the number of shapes Matthew had shaded in for each number.  And guess what?  Matthew shaded nine shapes for
the number 6 and six shapes for the number 9.  She is the teacher.  Why did she not notice that he had confused his 6 and his 9?  Instead, she thinks he has no number sense and needs to send his work home to correct with his parents so they are aware of the "problem".  

I know what the problem is and so does Matt, which is why he emailed the teacher to ask her to clarify why Matthew did not take out his Reading Journal... Waiting for her reply...

The reply... Matthew put his folder in "the box" instead of "the green bin" so his Reading Journal was not discovered until after the volunteers had gone.  As Matthew told us, they didn't call his name.  He is a red folder.  No folder, no Matthew.

Saturday, October 13, 2012

Happy Birthday

The posts are few and far between.  Life moves so quickly.  Jacob has turned four years old.  His face and body have certainly changed but he still looks like a baby.  He is still naive about the word around him, very innocent.  Matthew has been grown since he was three in terms of the complexity of his thoughts and emotions.

Jacob has been sleeping in his own bunk bed since the end of the summer after years of sleeping in Mommy and Daddy's bed.  I thought this was a necessary move developmentally and space wise since there will be a new baby in our bed in just a few months.  But we still let him lay with us for a little while before going to bed.  He is irresistible.  I say I love you Jacob and he says love you too.  And he does.

Jacob's IEP review went well.  I can tell that his teacher and therapists know him well, they are seeing what he can do and what he might do.  His speech has really exploded.  I only have difficulty understanding when he uses new words that begin with a "c" as far as I've noticed.

Saturday, September 22, 2012

Grown Up

Given that this is my third pregnancy, I become highly volatile when asked if I am having more than one baby. I carry big. And our third baby is measuring large. My other two babies are also growing with me. I was cleaning out their dresser to get ready for winter clothes and I found a few 2T sweatshirts that had never made it down into the basement. I remember dressing them in the sweatshirts. They were so small then. Their faces are changing, their bodies are lean. Matthew is in kindergarten learning math. Jacob has his second IEP meeting in a month. His speech therapist wrote to me the other day to tell me not to worry about him repeating words over and over - it is developmental non-fluency - totally normal. We met with a hand and wrist specialist over the summer who believes that surgery will help correct Jacob's right hand. She said that he has good extension of his fingers and if we move a tendon from below to above, he will be able to straighten his wrist and his fingers at the same time. This meeting caused me to rethink our OT goals in the IEP. I think we may have been aiming too low in terms of functionality. He will be able to do more with his hand than steady a piece of paper or hold an object to his chest.

Anyways, I am thankful that Matthew decided to buy his own house when he is older but to sleep over at Mommy's and Daddy's house every night.

Saturday, September 8, 2012

If I knew then...

The note I would have written to myself would have said "Just breathe. You will find your way." Link

Friday, July 27, 2012


During the third season of Young Athletes, I decided to pull Jacob from the program. I was riddled with anxiety about his behavior. Jacob whined and cried more often than he participated. And I was newly pregnant and exhausted. Jacob was most successful during the second season of the program, which was held at eNVy gymnastics in Tiverton. So I signed the boys up for gymnastics classes this summer. Jacob has participated in two bouncing classes so far. I was peeking at him from behind the curtain this afternoon. He was following directions. He ran to a circle that was part of a line of circles on the floor and sat down. When he saw where his brother was sitting, he scooted over to a circle next to him. Unlike Young Athletes where Matthew would partner with Jacob to complete the activities, Matthew was in his own class and Jacob was on his own. I cringed. I am still cringing. But Jacob held his own. He ran. He jumped. He climbed. He bounced. For an hour. He can't do a seat drop on the tumble track like Matthew, but I saw him hop. Jacob doesn't know. He doesn't know that he is different because he is holding his own on his own. No mommy, no buddy, no bruh-bruh. I wish I could be him - that is how much I respect and admire this boy.

Sunday, July 22, 2012


Since I spilled coffee on the computer a few months ago, I've been using the iPad to post but I don't know how to upload photos or videos. So follow this link. I can write about Jacob's progress, but seeing is believing. Please comment so I know you followed...

Tuesday, July 17, 2012

The Brighter Side

Jacob's speech therapist mentioned to me last week that he is blowing her away with his sentences. He still reminds me of my Russian grandmother's broken English but he's got ideas, memories, suggestions, and jokes. He was using the word "gammer" for about a month until I realized he was saying remember. To me this was significant because I was never sure if he had a concept of time, past or future. Jacob also had his evaluation for aquatic therapy and the Hasbro PT remarked that his balance was very good. He will primarily work on activating his right arm and hand to hold onto the edge of the pool and to move through the water. Once a week for six weeks. While I was there, I started to feel nostalgic about the constraint therapy program and put in an inquiry about next August. I still believe... Matthew had his first MANicure and pedicure this summer and loved it. He's also taking swimming, gymnastics, and karate. His behavior is always a challenge which I am managing with greater and varied experiences as well as with screaming until I fear the baby will go deaf.

Monday, July 16, 2012


As I was leaving school with Jacob, another mom was walking behind us and asked what happened to him. I ignored her. I was pissed. His WHFO (wrist-hand-finger-orthotic) and his AFO (ankle-foot-orthotic) beg others to ask what has happened to him. I realize that the assumption is that he has injured his hand and his foot. But seriously, we were leaving the Extended School Year program, where something has "happened" to every child. I was pissed because I would love to tell the truth but the other mom probably wanted to hear about some crazy mishap that Jacob would heal from in a few weeks. I know that I am being harsh. Probably over-sensitive. But when someone asks what happened to him, I hear what's wrong with him. And there's nothing wrong with my boy.

Friday, July 13, 2012

Must Be Nice

The expression "it must be nice" reverberates in my head every time I get ready to drop Matthew and Jacob off for summer school, giving me about two hours of time to do whatever. Jacob qualified for the extended school year for special education services and Matthew is going to camp at the Montessori school where he will be on the other side of half day kindergarten next year. Two hours, three days a week, for two weeks is twelve hours. Last summer, I signed Matthew and Jacob up for summer camp two days a week at the preschool where they were both going last school year. But Jacob broke his foot. "It must be nice." It is nice to have time to do whatever. Don't use it against me.

Thursday, June 28, 2012


Over summer vacation last year, I relied heavily on a fabricated Walmart pool with a slide. I rarely went to the beach alone and never went for the day. Neither Matthew nor Jacob knew how to swim and Jacob often fell in the water. Going to the beach was dangerous. But this year, Matthew is swimming and Jacob is more steady. The danger is still there because when Jacob falls, he does not react, and would let the waves rush over him if I wasn't there to scoop him up. He is also extremely disoriented when he looks down at the sand and sees the waves roll up on the shore and then retreat back into the ocean. What he sees with his eyes and what he feels with his feet makes him dizzy and prone to falling. Even so, Jacob jumps on the waves more than he falls and Matthew is a fish so I actually like bringing them to the beach. It also helps that Grandma and Grandpa left their car and accompanying beach sticker for us to use while they went on vacation:)

Tuesday, June 26, 2012


"Mommy, has eye keem atter eat my dinner?". (Mommy, can I have ice cream after I eat my dinner?) Eight words in a row. Cause and effect. He is turning the steering wheel on the tractor by himself. He can reproduce "sad face" whenever he wants to get what he wants. He sings aloud, by himself. Mostly the alphabet and Frere Jacque. He squats with a baseball glove to field grounders, and misses. He climbs into the car by himself. Still no potty training really. He can't pull his pants down. He can't aim for the toilet. He can't get onto a potty seat. He doesn't want to anyways. He wants his diapers. He still has trouble feeding himself. I think he was supposed to be right handed. He still sleeps in the king sized bed. We have been reluctant to move him anyways. I will never allow him to "cry it out" because he is so stubborn that he would cry for hours. I mean it. And I am pregnant again so it's not as if Matt and I are never alone:). Everyone asks where we will put the baby... The crib where Jacob was supposed to sleep is still in Matthew's room. We have plenty of space for a few years. I am about 14 weeks along and have been gong through a series of genetic tests because of my ethnicity and also because I am of advanced maternal age. I agreed to the tests simply because my new obstetrician is thorough and with what I know now, I would rather be prepared. It is certainly not an overwhelming fear though. Fear is no longer in my life.

Thursday, June 14, 2012

Just Keep Swimming

I signed Jacob up for swimming lessons a few months ago - the one with the bubble. I figured that none of the children knew how to swim so he was no different. I left his Benik brace on his right hand to be sure the instructor would notice that he was different, but I did not share how he was different because I was confident that Jacob would be able to hold on to the side of the pool. I already knew he could kick and I knew he had strength in his arms. But had I not pulled him from the water, he would have drown. He was afraid and the instructor was not experienced. I asked if there was someone who could assist him in the water and the following week, an intern was assigned to Jacob. He screamed and cried for me for about 20 minutes of the 30 minute lesson. The intern was not prepared to handle him. And so I withdrew Jacob from swimming lessons. I was given a prorated credit with the stipulation that the credit would be used for private lessons. I had already spent months trying to work out a schedule with the adapted aquatics instructor, but it was impossible which is why I signed Jacob up for the regular swimming lessons. Anyways, I went in last week to sign Matthew up and asked to speak with someone about this stipulation. When I was explaining why I withdrew Jacob from swimming, I thought I was going to cry, like I had just chipped off a piece of his dignity. He's three years old in the beginner swimming class with a bubble, just a step above the Mommy and Me class. Teach him how to swim God damn it! But no. Then I would have been missing a piece of my own dignity. So I called Jacob's pediatrician for a referral to aquatic therapy in Providence. Hasbro Children's Rehabilitation is wonderful and the pool is heated.

Wednesday, May 30, 2012


Our battle with Jacob's respiratory problems began in October 2010. And we are still fighting. I don't write much about it anymore because he has not been hospitalized since 2011. And he is seizure-free. Epilepsy and electasis do not elicit the same level of emotional distress. But it is distressing. I was always so sure about Jacob's epilepsy. I am never sure about Jacob's respiratory problems. X-rays. Antibiotics. Acid blockers. Steroids. Bronchodilators. Runny nose. Cough. Vomit. Fever. Ear infection. We first put Jacob through two modified swallow studies and a feeding program evaluation because Jacob's X-rays seemed to suggest aspiration pneumonia. He passed every test. Then we had to give him Prevacid every morning and night because if he wasn't aspirating his food and drink, perhaps it was coming back up at night in the form of acid reflux. There was no change in the number of respiratory incidents though while on the acid blocker so I stopped giving it to him. He was also put on Flovent as a preventative steroid but between the three pediatricians we went through and the pulmonologist, there was not much agreement as to the dose and duration. In the meantime, Jacob had an ear infection with each respiratory incident so we began seeing an ear, nose, and throat doctor. And several ear infections later, he had tubes placed in his ears. But still, with each respiratory incident, there has been an ear infection, and so Jacob has already been on three different ear drop antibiotics. With the last infection, he was also placed on an oral antibiotic. He has been on albuterol nearly every day since September and has been on Prednisone four times since January. Jacob's pediatrician discussed the danger of continued exposure to oral steroids and changed his Flovent to Advair. Jacob will need to see the ENT in two weeks and if the infection has not resolved, they will culture his ear. Like I said, it's not seizures but it's stressful and depressing at times.

Monday, May 21, 2012


If I had a girl? She would probably be just like her father too and I would be completely outnumbered in my house. Boys are easy because you don't have to do their hair and they look good with dirt on them. Girls are more challenging. I think. I know. I am a high school teacher. Honestly? I do not wonder if this baby will have a cerebrovascular accident or suffer from a rare catastrophic disorder. But I do want to be sure that this pregnancy is carefully monitored. I found a new obstetrician because after I told the last one what had happened to Jacob, his only response was that it was "fairly common". The new obstetrician delivered Matthew Jr. and I feel very confident and secure with him. We are almost nine weeks along and I have been so intolerable at times that there must be some baby estrogen interacting with my own. It would also explain the nausea that I have had for a few weeks that I never had with my boys. Nonsense. It's kind of nice to just think about nonsense for a while:)

Tuesday, May 8, 2012

No Surprises

The conversation did not have a sense of urgency, nor was it forced or uncomfortable. We decided that we were ready to have another child. I have always wanted to have another child but it did not make sense given Jacob's diagnoses and treatments and therapies and surgery. Until now. As a colleague noted, it is a testament to how well Jacob is doing because I would never take anything away from Jacob, especially my care. He is doing so well and he will be an amazing big brother. Jacob can never be replaced. Neither can Matthew. Each is my most special child and so too will be my third.

Thursday, April 5, 2012


"Farn door not open yet". Jacob was looking out the window across the street where the neighbors have a shed with barn doors. Jacob is combining five words regularly with fewer pauses in between. He is singing Bah Bah Black Sheep and ABC's and Scooby Doo. He misses many of the words but he is intent on mastery. When he sings along, his words are delayed, so he jumps to the very next phrase that he remembers. But he tries so hard. His brain knows what he wants to say. He is deliberate about annunciating final consonant sounds that he knows, which is significant because for some time, he would only pronounce the first part of a word. The hard "g" (guh) and "ck" (cuh) are still a challenge for him as word endings but he can say "go" and "cow". Multiple syllables are also still a challenge but he tries so hard. "Bubbah-fie" (butterfly). "Eh-fen" (elephant). We remind Matthew of how he used to say words like forklift "fork-lik-lik" and ambulance "ambullence". Jacob will learn. I have no doubt.

At school, Jacob was throwing toys across the classroom and had to sit in THECHAIR. Matthew told me all about it. The next day, Jacob told me he was throwing wood chips outside. He was sitting at the picnic table when I came to pick him up. His teacher said that ALL of the boys were in trouble that day. I like that he is getting into trouble for two reasons. One is that he is acting like a little boy. The second is that his naughty takes the edge off of Matthew who is so pleased with himself when Jacob is in trouble and he is not.

We are in such a different place as a family. Jacob is delayed in other areas besides motor skills and speech - eating, dressing, and toileting - but I don't worry so much about him falling and breaking his foot or his teeth again. I don't worry so much about his cognitive development. I am in a peaceful space.

Sunday, March 25, 2012


Purple Day is tomorrow. Epilepsy awareness. Jacob was weaned from his anti-seizure medication about four months ago and has been seizure-free for over a year. Thank you God. Thank you Dr. Brown. Thank you Jay-juh.

I barely remember Jacob before the age of six months. If everything is as it should be, perhaps I was not meant to remember. My un-awareness of epilepsy would not have served me well. My war chest needed to be filled with research and specialists, not squishy, fuzzy thoughts.

Wednesday, March 21, 2012

Say What?

I have been reading the guest posts at Team Aidan ( from the series Faces of Epilepsy. I used to think that epilepsy meant grand mal seizures. My first experience with epilepsy was 10 years ago when I was a much younger teacher and one of my students walked over to me to ask a question and then slumped down to the floor shaking. I had the school call 911, moved the chairs and desks out of the way, and cradled my student's head until the paramedics arrived. I actually saw him a few weeks ago at Best Buy.

When I saw Jacob's first seizure, I looked up "tics" and "convulsions" in my What to Expect book. I had no clue. I was confused when I learned that Jacob had Infantile Spasms AND epilepsy. Clueless. Ignorant.

Please visit Team Aidan for some awareness, education, and inspiration.

Monday, March 19, 2012


"Bruh-Bruh... tae... seat... beht... off". (Brother take seat belt off.)

"I... wan... ehwmo... jew... pea". (I want Elmo juice please.)

"Nigh-nigh. Dar... ow... side. Sun... go... nigh-nigh. Puh... jym... on". (Night-night. Dark outside. Sun go night-night. Put jammys on.)

"Pay... ow... side... get... home". (Play outside get home.)

Jacob's word combinations are growing.

His body is stronger. He is running. He is lifting both arms up in the air, at the same time, straight up to the sky.

He is following directions and redirection.

He is becoming Matthew's playmate, his friend.

Wednesday, March 14, 2012

Fend Be No No

I was in the Principal's office. Not at my school. At preschool. And not for Matthew. I had a feeling. Jacob has been misbehaving. He has been telling the teacher "No! No! NO!" and has been disruptive during circle time. The first meeting about Jacob where I did not cry. Matthew and Jacob have virtually reversed roles over the past few months. My naughty boy is more angelic and my angel... at home, at school, and even at Special Olympics - he has been throwing the "stick" that he is supposed to be running with during the relay.

Naughty is a choice and Jacob is making choices independently. He is using his ability to reason to decide how he chooses to behave, the same ability that will allow us to redirect his behavior. He is developing... normally.

He is tattling on his friends. "Fend be no no". He says he wants " buhd poop" for dinner. He calls everybody "baad boy" when he gets in trouble.

Jacob's special education teacher at his other school is going to observe him next Monday and discuss some strategies with his teacher. I believe in freedom and independence. I also believe in conformity. I want Jacob to be able to adapt to any environment and to understand "the rules" of interaction.

Wednesday, February 29, 2012

Leap Year

I don't want to jinx myself, but I may have found another piece to the respiratory puzzle. Jacob was on prednisone for about ten days and exhibited all of the side effects like roid rage and insatiable hunger. For several days after we stopped the medication, he was still asking to eat about every twenty-minutes. Anyways, he came off of the medicine last Tuesday and off the inhaler every four hours by last Friday. Then we went to a birthday party and I watched as a little boy coughed right into Jacob's face and thought "Oh dear God, here we go again". Sure enough, by Monday morning Jacob was coughing, and sneezing, and had a constant runny nose. He went back on the inhaler every four hours. I could feel the junkiness in his lungs when I held him under his arms. And he woke in the middle of the night as he does whenever he is sick. But now it is Wednesday and he hasn't gotten any worse. Usually I am preparing for a sick day from work by now and deciding whether to take him to the walk-in clinic or to call his pulmonologist. But he is maintaining a cold. I'll have to do some research but I wonder how long the effects of prednisone linger in the body. Has it offered him some protection? Maybe he needs to be on a low maintenance dose during the cold season? No, I am not a doctor but I might as well be.

Friday, February 24, 2012

February Vacation?

I have not been uninspired but I have not written for some time. Scheduling. Jacob has been to the ENT, orthopedist, orthotist. And he has been to the pediatrician's office several times and the pulmonologist's office a few times in the past month. We have not been able to resolve his respiratory problems. Reactive Airway Disease, Asthma, Pneumonia, Atelectasis. Given his response to the most recent treatment plan, atelectasis is likely, where parts of his lungs get stuck together because there is an excess of mucus in the airways. He was on prednisone as well as antibiotics and inhalers. His lungs are not able to clear the mucus but I still don't know if it is because of his hemiparesis or because his lungs are damaged. He has not had another ear infection since the tubes were placed.

Jacob has been doing well otherwise. His mobility has improved so much that I am thinking of asking his PT to evaluate his walking, running, ascending, and descending without his brace. I believe... especially after spending two hours watching him play in a bouncy house and running around in his socks. Jacob's speech is also improving. He strings more words together with fewer pauses in between. He uses his own phrases from his own vocabulary. "Mommy... You wait here... Me be back... Kay". He says "freeday" (threeday) when I say "tomorrow" because I think he thinks "today" is twoday. And he says his name is "Jay-juh Bor-gedduh".

He is also very stubborn, opinionated, demanding, feisty... which along with having a Matthew in the house, makes for a challenging week off from school.

Sunday, January 8, 2012

The Matty Fund

Please visit the following link to read an interview with The Matty Fund. All comments to the post will be honored with a $1 donation (up to $200) by Pier Cleaners.

The Matty Fund sent a care package to us while in Boston for Jacob's neurosurgery. It truly was a gift in so many ways.

Thursday, January 5, 2012

Four Again

The day after Matthew's 5th birthday, all of the binkies in the house suddenly disappeared. Matthew searched until the thought crossed his mind. The Binky Fairy. He understood that his was taken since he had just turned 5 and that in the United States, 5 year olds were not allowed to have binkies. But he questioned why Jacob's binky was taken as well since he was only 3 years old. The Binky Fairy does not discriminate. He also questioned why the Binky Fairy had not left him a gift in exchange. She must have been confused when she saw all of his Chanukah, Christmas, and Birthday presents. Later that afternoon, Matthew discovered the curly ribbons attached to a new toy for him and a new toy for Jacob. He decided that Santa must have come or perhaps the Tooth Fairy. He proceeded to check his teeth but there were none missing. Then I suggested that maybe the Binky Fairy had come, that I had heard a strange whisper that sounded like the whisper I heard when the binkies disappeared. Matthew cursed the Binky Fairy and wished that he was 4 years old instead of 5 and Jacob swatted at me.

The binkies are nearly forgotten now.

Jacob is scheduled for surgery on Tuesday to have tubes placed in his ears. He has already had two pneumonias and two ear infections this winter. The same pattern as last year. About a week after he finishes his antibiotics, sneezing, runny nose, coughing, and we brace ourselves. He will be seeing his pulmonologist next week as well and we may need to explore the anatomy of his lungs because the acid reflux medication, inhalers, and breathing treatments are not preventing the pneumonia. I reasoned a long time ago that if he has right-sided weakness in his core and extremities, then he may also have weakness in the muscles that contract to expel mucus and infection from the lung. His right lung is always affected, and because of the anatomy of the lungs, he was thought to have aspiration pneumonia or that his stomach contents may have been creeping up at night when he was laying down. We shall see.

Sunday, January 1, 2012


Jacob's Hemi-Day was a quiet celebration, rather a reflection of his progress. He is able to stand on our bed without falling. He is able to combine up to four words at a time. He is able to climb up on the couch. We do not take anything for granted.


Happy New Year and Happy 5th Birthday Bruhbruh. You will always be Jacob's beh fend:)