Countdown

Jacob. Ten-months old. Drool drenched Harvard onesie. Crooked smile.

Many months before neurosurgery when he was having seizures and I was at war with his brain.

Jacob's Hemi-Day is December 22nd and I find myself counting down again as I had a year ago.

Matt was in Boston on Christmas Eve and I was there on Christmas Day so one of us would be home with Matthew. I remember dragging a gigantic black garbage bag full of presents from the parking garage to Jacob's room in the ICU.

The little Christmas tree given to us at the hospital is on Matthew's bureau. We placed it at the end of Jacob's bed when he was in Boston so he could see the lights. I hung the guardian angel that was tied to Jacob's bed on our tree.

I feel sad for Matt and Beth now.

But I was at war then. Annihilation of seizures.

Success. Jacob is fabulous. He "pay fend" every day. He "wake up bruh-bruh seep" every morning. He "ee aye-heem now" every afternoon. And he "nigh-nigh Mommy bed" every night.

Tis the Season

pneumonia.

Time Travel

I remember when I was searching for information about infantile spasms and hemiparesis and perinatal stroke. I was not looking for babies. I was looking for adults.

I needed to know what to expect for Jacob.

I have gone through the stages of grief.

I have recognized that the past and the future are for time travelers.

I remember a year ago, Jacob was "quarantined" after his second pneumonia in preparation for his hemispherectomy surgery in December. And eleven months after surgery... Jacob remains seizure free and medication free.

His right hand is tight. Very tight. But I have found the perfect therapy for him. Clapping. I extend his wrist and say "open your fingers" and I watch as he extends his fingers. Then I bring his left hand to his right and CLAP! He LOVES to clap his hands. He LOVES to "run" and "jump". He LOVES to be tickled. He LOVES piggy-back rides.

If there is another more perfect Jacob in some alternate reality, I would not know him and I would have the time travelers wish him well. My Jacob is my reality. He is beyond statistics and beyond prognoses. He is becoming all that I ever wished he might have been.

A Thousand Words

Preschool

Halloween

Special Olympics Young Athletes

Milestone

Jacob is seizure-free and off of his anti-seizure medication. Disbelief. We NEVER missed a dose in a year and a half. The last vial of ACTH still resides in the refrigerator and I suppose the last bottle of valproic acid will remain on the counter top. We still have needles, syringes, gauze, and alcohol wipes in our cabinets. Never forget.

I often need to be reminded.

I was meaning to write a post titled "The Truth" because I have been feeling MISERABLE and OVERWHELMED for a few weeks. Why does everything always have to be so difficult? Jacob requires so much care and Matthew requires so much discipline. Ironically, Matthew is more difficult than Jacob. I will not apologize for or feel ashamed about how I have been feeling. My pity-party.

And then I am reminded as I give Jacob his acid-reflux medicine. I glance at the bottle of valproic acid and smile and set it aside.

"free"

Jacob is "free" years old. For his first day of preschool, I packed his Jacob backpack, given to us by Danielle and Jonathan (www.happybeingtrevy.com) prior to Jacob's surgery last December. All of our proverbial eggs were in that backpack in Boston and now... it is filled with diapers and wipes, a snack, and a drink. Jacob is taking 2 mL of valproic acid twice daily. I am sure that he has been outside of the therapeutic range for a few weeks and we have not seen any seizure activity.

So hard to believe what this three-year-old has experienced. And yet, he is a happy little boy. But Matthew is not. He was sure that when we woke up Monday morning that Jacob would be bigger. We even measured how big Jacob would be in comparison now that he would be turning three. Matthew was certain that Jacob would be a big boy, not a baby anymore. He would even let Jacob ride in the police car with him. But to Matthew's disappointment, Jacob was still a baby to him. I feel sorry for Matthew because he is experiencing what I have chosen to move past.

Jacob is not a typical three-year-old.

Bittersweet

At 9 months old, he was unable to sit up without support or roll over. His right hand and foot were clenched. I religiously practiced all of the prescribed stretches and exercises and over time, Jacob's core strengthened and he was able to sit up independently. He was able to roll to one side. He was able to bear some weight on his elbows and through his shoulders. Over time, Jacob was able to roll from front to back and back to front. He became mobile within a small circumference around his body. Over time, he figured out how to scoot and expanded into a linear environment where he could do more than just reach, he could explore. Over time, he was able to pull himself up and move from side to side. Over time, he was able to harness the power of his legs and take his first tentative steps. He became fearless. Over time, he replaced sounds and gestures with signs and then with words. After nearly 2.1/2 years, Jacob is aging out of Early Intervention.

I am sentimental. Early Intervention has been with us since the beginning because really, Jacob's life with us before Infantile Spasms is a faint memory. Except for the lobster costume I made him wear for Halloween when he was not even a month old. I do not transition well. I do not say goodbye. If we weren't going to visit Jacob's new school this morning, I would have thrown myself down the front steps screaming "You can't leave me now!". Oh well. Next time:)

3 mL

Atop our little white bookshelf are pictures of our life. One picture caught my eye a few days ago. It was of Matthew wearing one of my hats backwards as he was crawling towards the camera with his big head, even bigger eyes, and his little body. Life was different before.

But everything is as it should be.

I am on edge about Jacob's medication. I forget to breathe. And I forget to believe while I measure the precise dose as if his life depends on every drop. Since September 7th... 7 mL to 3 mL twice daily.

I am also on edge about Jacob's transition from early intervention to special education. I do not transition well.

Jacob is over the top - combining two words frequently and sometimes three words and using new words like job, work, wih-woh (window), and pee-me (peenie).

IEP

Jacob's IEP will go into effect as of October 10th when he turns 3 and is eligible for special education services. The IEP team recommended placement in an integrated preschool program where fewer than 50% of the children have special needs. He will receive 1/2 hour a week of PT and OT in the classroom and 1/2 hour a week of each outside of the classroom. He will also receive two 1/2 hours a week of individual speech therapy and 1/2 hour of whole group speech therapy. And the special education teacher will be working with him for 1 hour a day on classroom routines and 1/2 hour a day on social skills. I am very happy with his placement and how thorough his EI team was in his transition report and how carefully his IEP team considered his needs as if they had been working with him all along. I almost began to sob when the PT said that one of her year goals for Jacob was basically to be able to keep pace with the other children. I had visions of him trying to run and being so far behind the other children trying to catch up. Very melodramatic visions I have. But anyways, the idea that he might be able to run alongside other children and maybe actually tag someone made me tear up.

When Dr. B asked me if I ever thought we would be where we are with Jacob, I told him no, that I thought we were all going to die. I don't know how many times I died in the last 2 years. So dramatic I know. But Jacob gives us new beginnings over and over again. He is more than the difference of his missing parts.

4 mL twice daily tomorrow night... uncharted territory... keep breathing with me.

Montage

Copy and paste the following URL to see all of the photos and to order prints...

http://megmac.smugmug.com/Sports/Unified-Special-Olympics

password: soya2011

500 mg

I have not seen any seizure activity since we began weaning Jacob from his valproic acid (Depakene) on September 7th. He was taking 350 mg twice daily and is now taking 250 mg twice daily. Since I have no idea at which point his dose will no longer be therapeutic (according to levels in his blood), I have been as vigilant as ever. As much as I would give for him to be drug-free, I have no tolerance for seizures. I believe that when Jacob started valproic acid in February 2010 he was taking 250 mg twice daily or 5 mL of syrup but I saw seizure activity and his dose was increased twice more to 6 mL and then 7 mL, his dosage for nearly a year and a half. Withdrawal can actually produce seizures which is why it has to be weaned slowly. Dr. B would NEVER recommend weaning unless he believed that Jacob had a chance of being seizure-free. It is the impossible dream but Jacob has beaten the odds before, early on, when Dr. B didn't think that ACTH would work for Jacob's Infantile Spasms because brain malformation was the known cause or that Constraint Therapy would be effective because Jacob was born without a motor cortex in the left hemisphere of his brain. If Jacob is destined to live with epilepsy? We are living the dream right now. He is thriving. He is fulfilling his potential, whatever that may be. But I will be devastated if I ever see another seizure.

Sunday

This morning, Matthew and Jacob delivered a small bouquet of flowers to our local fire department.

This afternoon was the second week of Special Olympics Young Athletes.

Wean

Dr. B asked, "Are you feeling brave?" We have begun our seven-week wean of Jacob's seizure medication. If he has a seizure during this time, he will remain on his medication. Are you feeling brave? I was. I am. I believe. I believe in all that we have done. Be brave. This is it. Now breathe.

Young Athletes

Please indulge in a piece of courage, humanity, dignity, equality, and kindness.

Bubbles

Good times in Seattle!

What Is It?

Something is following me around the house on my day off while Matthew and Jacob are at school. What is it? Leave me alone. I need to pick up the house. I have packing to do which means I have laundry to do. But I do laundry every day. I have dinner to prepare. Yes, I am cooking chicken at 10 am so I will have dinner ready at 5:30 pm. Matt is leaving for a Patriots pre-season game at 3 pm which means we have no chef tonight and I invited Grammy to have dinner with us. I am packing for our trip to Seattle to visit Uncle Jeff, Uncle Chris, Auntie Dianne, Auntie Allie, Uncle Lyle, and Cousin Cole. Matthew and Jacob on an airplane... I apologize in advance if you are seated in front of us or anywhere on the plane. So what is following me? My conscience? Nope, that's in my bag of Pirate Booty. My behind? Well, yah... Pirate Booty is NOT a diet food. Oh, I know! It's my piece of mind! It wants to watch TV and read a magazine and smoke cigarettes and drink coffee. Well, why didn't you just say so! The chicken is done and we aren't leaving until Saturday. I can pick up while I watch TV. And really the laundry machine does the laundry. I did the dishes last night, well actually, the dishwasher did them. And I managed to take a shower this morning before Matt left for work. So we're good. I love my day off!

Words

xhumee (excuse me)
raul (crawl)
coot (scoot)
behpeh (Betsy)
hie (hide)
baa (bath)
wauwah (water)
bee (beach)
whim (swim)
toe (toast)
weeooweeoo (fire engine/police car)
mihl (milk)
tay (stay)
boe (boat)
pooh (pool)
hoe (hose)
cow (couch)
moo/cow (cow)
tsih (sip)
cat
daw (dog)
beh (bed)
paeya (pear)
yehyoe (yellow)
boo (blue)
ayee geem (ice cream)
djew (juice)
trwau (straw)
mooh/beepbeep (move)

The Gift

Matthew said his bedroom was creepy. He was waking with nightmares about bad llamas, coyotes, and a monster with green eyes looking at him from behind the closet door or under Jacob's crib. For a few months, he would join us in bed, on the couch, or I would tuck him in to the love seat. Sleep interrupted. Since Matthew was born... and then Jacob... there has been nursing, gas, vomit, explosive crap, teething, breathing, seizing, ear infections, more milky please, urination, constipation, lost my binky, snake shadows, scary noises, coughing, foot in my butt, and general anxiety.

Matt and I decided then to convert Matthew's toddler bed into a "big boy" bed, literally, because it is a full size bed. And magically his room became awesomest. And it was not creepy. But he wanted Mommy to sleep with him. Matthew has been sleeping on his own since he was 9 months old until lately. Jacob slept in his crib for a month here, a week there.

I parent by instinct, by what I feel in my bones and in my gut. That's how I know when I've done something wrong or I've done something right. And my bones and my gut have begun sleeping in the full size bed - after I have laid in my king size bed until Jacob falls asleep.

So now to the gift. I was thinking about what makes Jacob so special. I think it is the way he loves. He loves everybody but not in a universal sense. He understands his relationship to others and the purpose they serve in his life and he loves each and every one of them in a very unique way. He loves his therapists for example and his teachers and his family and his doctors. And so when it is time to go to sleep and he looks at me and says nigh nigh and kisses me behind his binky my bones and my gut feel that he loves me like no one else.

The crib will continue to double as a bouncy house.

I Love Him

Since Jacob's hemispherectomy we have been at "wait and see" which is certainly better than "hurry up and wait" or "running scared". But the work is never done. Never. I am constantly reflecting upon Jacob's progress and where he should be, could be, or needs to be because where he is at is in itself the product of endless contemplation. Do not misinterpret as dissatisfaction because in fact I think Jacob is the most perfect being. His body however must be challenged and his brain must be driven to do his will. He is a busy boy and has so much to do. Speech. His vocabulary is growing, his articulation is improving but I do believe that he has expressive aphasia. This is not because of testing but because I know what he knows, what he has experienced. I know that he is intelligent. He has more to say. Mobility. His foot has healed. He still has all of his teeth. He will be stronger. He will be faster. He will participate in all things boy. I used to question at times if my motivation was a form of denial, an unwillingness to accept any prognosis. But I am not in denial. My only motivation is Jacob because he doesn't know and if I have done the work, he never has to know.

Mu

Jacob is going to be a Special Olympian. Someday. Or a Paralympian. The fall season of the Young Athletes of Tiverton begins on August 28th and will feature track and field, soccer, and tennis.

Today was our sixth "Mommy and Me" swimming lesson at the YMCA and Jacob is amazing. His right arm is generally rigid for the entire half-hour because his lower extremities are exerting so much force. Matthew and I attended the same class until he was 3 and he was never as powerful as Jacob. And he does this while his foot mends from a fracture 3 weeks ago.

The fracture still pisses me off but has had some therapeutic value. Jacob has been able to commando crawl for some time where his belly remains on the floor and he predominantly uses his left arm and leg to propel himself forward. For about 2 weeks, Jacob was unable to walk so he regressed to scooting on his butt. We would tell him no scooting and ask him to crawl and then... he got up on all fours! And he moved forward! An inch give or take. Since Jacob was 9 months old, Early Intervention has been targeting weight bearing through his right arm. And now finally 2 years later he decides to get up on all fours.

This as well as the discussion around Jacob's final IFSP (EI Service Plan) has taught me that Jacob is going to take his time getting to wherever he needs to be but he will get there. It may have taken him 2 years to crawl or 3 months to say open (and maybe 18 months to say milk because right now we're at "mu") but he has done it.

By the way, he has added chawchoe (chocolate), tair (stairs), tar (star), duh (duck) to his words.

Random Pictures 2011 Part I

Empowerment

I realize that I did this before. I posted a link to another site in an effort to garner support for a "foundation" that claimed to serve the special needs community. During the past week, the very same special needs community dismantled this "foundation" for failing to deliver on a promise made to Jacob and other deserving children. Nearly all parents are protective of their children but parents of a child with special needs are ferocious. My momma bear claws are always sharpened, mostly for protection, but I have been known to attack.

A few of the other mamma bears and papa bear(s) devoured the bunny "foundation" and have been empowered to begin the work of fulfilling the promise to the other deserving children. The work? Mission iPossible.

Smorgasbord

I am SO guilty of rubbernecking. For several days I have been following the aftermath of a special needs iPad giveaway gone bizarre. The iPad that Jacob was selected to receive was never going to arrive so Grammy bought one for him. Already Jacob is saying pih (pig) and daw (door) - Peekaboo Barn Lite iPad App.

He is also saying kih (kick) and knee and albow (elbow) and wau (walk).

While Matthew has swimming lessons at the YMCA, Jacob and I are in the Parent/Child Water Adjustment Class. They both love the water. This week I bought a plastic pool to save me this summer. Six feet in diameter with about four inches of water and a dippy little slide makes two boys very happy. Matthew and Jacob were supposed to attend summer camp twice a week while I ate Pirate Booty all day. But Jacob cannot attend with his fractured foot and unwieldy boot cast so we share the Pirate Booty. After dropping Matthew off this week, Jacob was in his car seat saying brahbruh, brahbruh. Matthew's name is Brother to Jacob. He was already missing his brother before leaving the parking lot:(

I have been very interested in Jacob participating in a Special Olympics Young Athletes program because there are a limited number of athletic activities for children like Jacob in our area. Matthew has been loving the mini bar and tumble track in gymnastics at the Y.

Annual IFSP

Mr. B., Jacob's physical therapist, wrote the following statements as part of his assessment of Jacob's gross motor skills... "On a good day Jacob's tendency to fall from an unsupported standing position is often sudden and relatively unpredictable. On a good day his protective reactions are often just enough to minimize the force with which his face hits the ground when he falls from a standing position." Anxious laughter? Gasp? Perfect depiction of the perils of Jacob's mobility.

Safety will be the greatest piece of Jacob's transition puzzle into the public schools this fall.

Jacob scored lowest in gross and fine motor skills as well as cognitive skills (which are determined in part by Jacob's expressive communication and fine motor scores), followed by expressive communication, receptive communication, and adaptive skills. Jacob's social emotional skills are not delayed.

two, free, fie, tsi, ay, nie

Jacob was counting this morning! Delayed? Developing!

Two Left Feet

Jacob is wearing a "boot" after fracturing his right foot on Thursday. The break is very small and should heal quickly. "What happened?" He fell... rather... he was walking. He falls when he walks. He falls. He falls. He falls. A loose baby tooth here, a fractured metatarsal there, black and blue on his beautiful face. A walker would be great except that he would not tolerate it and his right hand could not operate it. A one-on-one aide? Great... except Jacob did not qualify for the social service programs, apart from Early Intervention, that are offered to disabled children. (Judicial appeal in process.) We need a plan. He needs more therapy.

Potty Talk

Off in the distance, a small figure was peering from behind the downspout at the back of the house. "Jacob? Do you have to go poop?", Mommy asked. And Jacob turned away, head down, sad face, shoulders limp. "Jacob? Do you want to use the potty?", Daddy asked. "Yah. Yah. Elmo!", Jacob exclaimed as he turned back towards Mommy and walked briskly towards the stairs. "Elmo". "Elmo." And so he went to use the potty and he went poop but only after making noises that seemed poop-appropriate. "Eeeeee. Uuuuugh." We have a Sesame Street potty seat - hence Elmo. But Jacob also uses "Elmo" for his juice boxes and for going into the basement where the Elmo Restaurant lives. His diapers have not been dry or unsoiled by any means but he went from rejecting the potty entirely to using it about 8 times in the last few days. I thought he was getting ready when he started telling me at night before bed that he had pee in his diaper and wanted me to change him. Again, I love when Jacob knows that he has accomplished something. He smiles at me and giggles when he uses the potty.

Like EVERYTHING else in Matthew's world, potty-training was a battle. He was interested in the potty before he turned 2 years old but it wasn't until last summer when he was 3 and-a-half that I finally told him I wasn't going to diaper him anymore, except at night but those diapers were different because we called them night-night diapers. Those diapers faded away within a few months when he was dry through the night but we've probably had about a dozen accidents since then. Matthew told me once that he must have been so sweaty that the bed got wet and another time he said he woke up and somehow water had spilled on his pajamas. Hey I just change the sheets and put him back in bed. No questions asked. As long as he isn't peeing all over the house or on the front lawn...

Two Front Teeth

I feel as though we have weathered the storm of our lives. But somehow every time Jacob is injured I find myself in crisis. I seem to have limited coping skills. Jacob fell face first into our driveway while "running" to chase Matthew. I was no more than 10 inches behind him and managed to get my hands on him but his body rotated and I wasn't fast enough. I saw him falling in slow motion. He was like a cat trying to right itself while free-falling. He just didn't have enough time to even try to put his left hand out to break his fall. He definitely has delayed motor control... it takes him about 6 seconds to throw a ball with the ball in his hand and his arm cocked back. I grabbed him off the pavement and ran inside the house to the bathroom. I was looking for his owee and when he opened his mouth all I could see was blood. I started dabbing the blood with a wet towel because I wasn't sure if he had lost any teeth and I didn't want him to choke on any fragments. I couldn't tell at first if he was bleeding from the top or the bottom, but once I cleared most of the blood, I could see that he had all of his teeth and the blood was coming from his top gums. His front teeth looked longer than usual, the gums above were all cut up. Then I felt one of his teeth and it wiggled. I felt like I was in a horror movie. The bleeding seemed to stop and Jacob stopped crying so I got him some ice cream while I was trying to call the dentist. I had to call three times because I just couldn't concentrate on the number I was supposed to call. I couldn't find a pen. I ended up typing the number on the computer to remember and then called to leave a message. I was also looking up the number for the ER at the hospital. I didn't know if he would need stitches or something for his gums. I calmed down once Jacob seemed himself again and waited to hear from the dentist. When he called me back he said that at this age, they wouldn't do anything even if he had lost his teeth. I was relieved and Jacob was fine minus the gash in his gums and some scrapes on his chin.But the next morning when I was changing him I looked at his teeth and one of them near his front tooth was half its normal size. Once again... horror movie... blood rushing to my feet, heart rate out of control. I touched the tooth with a wipe and something came off of it. OATMEAL! Oatmeal was concealing his tooth. What is wrong with me? Seriously. Jacob's teeth are fine. His gums are healing and the teeth are already solid again.

Vacation

The end of the school year is always cathartic for me but this year was special. I was on leave with Jacob for 3 months, 10 weeks of which were consecutive, with recurrent pneumonia, neurosurgery, and specialist appointments. As I was cleaning and organizing my classroom, I was already looking forward to the next school year. A new year. A full year. Jacob will begin weaning his medication in September when I go back to school and in October he will transition to the public school system for his therapeutic services.

My last day was Matthew's first day at Jacob's school. Both boys will be going there 2 days a week through the summer and 5 days a week beginning in September. Auntie Mary, who has been Jacob's "playground assistant", said that Matthew and Jacob were holding hands today through the gate that separates the toddlers and infants from the pre-school children.

I'm still sad about Miss Edie, but her classroom is now filled with... babies. Jacob is not a baby anymore and he is doing really well in his new classroom. His social emotional development is far more advanced than mine.

Matthew also did really well today:)

Big Boy

Auntie Betsy visits Jacob at school...

Toddler 2

As I was packing up Jacob's belongings, I looked around the classroom and I was sad. Very sad. My eyes were watering and I was embarrassed for crying. I quickly thought of other things... Where did Matthew go? Why is the rug so dirty?

Jacob will be moving to the Toddler 2 classroom (next door) on Monday and he will be leaving Miss Edie (dee-dee) and Miss Hannah (nah-nah) who have loved him all year long.

I am very sad.

Sandbox

Jacob and Matthew played nicely in the backyard this afternoon giving me hope for the summer when I am home with them for 8 weeks. Jacob has been using two hands more and more. Today he grabbed both rings of the monkey bar and walked back and forth to "swing". He was so proud of himself. I am loving that he knows when he has accomplished something.

What will become of Jacob?

The question that fueled my anxiety and fear so long ago.

I have the answer.

He is becoming Jacob.

Status

Jacob had a follow-up appointment with his pulmonologist yesterday and he believes that Jacob's pneumonia was aspiration related to acid reflux. Since Jacob has been on Prevacid, he has not needed his Albuterol inhaler for three weeks. He is 85% improved from a month ago. I am so relieved and thankful that we decided to seek the advice of a specialist. Unfortunately, for months we were told asthma, asthma, asthma but he does not have asthma. He will need to take Prevacid for years and we will have to see how he does next winter when the flu and cold season peaks.

Jacob has a new thumb brace that he will wear during the day to keep his thumb out of the way of his fingers when he uses his right hand. When I asked to put it on him at school to see how it fit he said uh-uh. And when I asked him where it was supposed to go, he gestured towards the garbage! He did put it on though and it does make a difference without restricting the movement of his hand and fingers.

I feel so lucky.

The Stem Cell Revolution, Part 2

Amanda, my step-brother's wife, knitted Matthew's My (blanket), over four years ago when she was blind. Check out this clip...

License to Drive

"Tactah." You want to drive the tractor. "Yah. Yah." "Bih." The big tractor? "Yah." "Me."

Jacob figured out that if he sat in the middle of the two seats of Matthew's John Deere Gator, that he could press the pedal with his left foot. He cannot steer however so Mommy and Daddy walk alongside while he drives. His new obsession in stark contrast to "shuvoh." I liked shovel better.

He also drives the small tractor, which I prefer because it actually has greater therapeutic value. The pedal is on the right so he has to apply pressure with his right foot to propel the tractor. It took him about a week to be able to do this on his own. Every time he drives, he holds on with two hands. I love watching him open his hand and grasp his fingers and thumb around the steering wheel.

He is also learning how to climb on and off of the Gator by himself using two hands.

STOP is our next lesson.

Pictures to Follow...

Jacob attended an end-of-year carnival at his school on Friday and had a blast in the bouncy house and on the slide. He looked as if he had never been happier in his whole life! A special thanks to the teachers at Bright Ideas who assisted Jacob when climbing into the bouncy house, who held on to him while he bent at the knees and "bounced", who lifted him up to the slide, and who helped him sit and push off down the slide. Kate Russo, Lea Squatrito, and Katie Perugini - you made my night because you did what I would do for him as his Mommy and gave me a moment to experience his joy.

Words

More words that Jacob has been using spontaneously...

tee - teeth

pay - paste

doht - cold

daah - car

poohn - spoon

bow - bowl

elmo

tiht - sit

buuh - book

tair - stairs

Communication.

The first question I asked when Dr. B told us two years ago that Jacob had a stroke was "Will he be able to talk to us?"

Afterwards, of course, we learned that there are many ways to communicate apart from the spoken word. Jacob has always been able to "talk to us" with gestures, signs, and sounds.

But to hear his voice, to hear him speak. Words. He will control his own world some day.

Out of My Element

I don't know what to make of Jacob's pulmonologist.

When he heals Jacob's lungs... he will be a brilliant doctor.

He is thorough.

The results of two barium swallow studies have shown that Jacob's anatomy is normal. He is not aspirating as a result of eating or drinking.

Jacob will be on acid reflux medication for the next month and then we will follow up with the pulmonologist.

If he does not have acid reflux, then he will have a bronchoscopy.

"Can't you just go in there and get that sh*t out?"

The answer was yes. And then the doctor asked if I was getting out much.

Happy

We have a Gymboree birthday party tomorrow afternoon so I was looking forward to Jacob going berzerko again. In preparation, I sang three rounds of happy birthday to him to get him psyched and each time he yelled "YAY" and "MAW". When I picked him up from daycare this afternoon, his teacher Miss Edie asked him to deliver something to me... "Mommy. Mommy. Happy!" She had asked him to say happy mother's day when he gave me a picture for the refrigerator. Perfectly annunciated happy when just this morning he was saying happah. I forgot what Auntie Zinovia called it but it's something about being able to think about what you're saying and how you're saying it. I do model the words for him but Jacob is self-editing because no matter how he says it, I accept it. I validate what he is saying by repeating what he has said and then responding to him. There are still words that I ask him to say the way that I am saying it like milk because he would rather sign the word than say it or he just says a sound with an "m" in it. Just like the word open, we have been working on the word milk since he had his last constraint therapy and couldn't use his right hand to sign for milk. It seems to be the words that we pay little attention to that he tries to approximate. Stubborn.

Pointless Story Part III

If 4.5 million children were born in a year, maybe 1,500 of these children would develop Infantile Spasms (IS) in their first year of life. And maybe 1,200 of these children would have symptomatic IS in which an underlying condition would be identified, of which maybe 400 children would be diagnosed with a brain malformation. Only about 100 children with various forms of epilepsy including IS would have hemispherectomy surgery and of these children, 2 may die.

To all of the families and children who came before Jacob, we thank you. Jacob is only 1 child. Our child.

Epilepsy surgery, particularly hemispherectomy surgery, seems to be a primitive measure. Even so, hemispherectomies performed today are more advanced than a decade ago - thanks to the children who came before Jacob and advances in diagnostic imaging. Perhaps when Jacob has grown to be a man, stem cell therapy will be available because of children like Jacob whose brain tissue was donated for epilepsy research.

I travel in small blog circles - infantile spasms and epilepsy surgery. I have been troubled by the stories of children who had been diagnosed with IS and had relapsed and from the number of drug trials that these children had endured before being considered for epilepsy surgery.

Jacob's epileptologist characterized Jacob's seizures as "relatively mild" and during the conference at which Boston would determine whether Jacob was a surgical candidate, there was discussion about proceeding with additional drug trials because Jacob had only been on phenobarbitol and depakote. However, the panel considered our wishes - to prevent seizures, however mild, and anti-seizure medication from impinging upon the development of the right hemisphere of his brain.

Jacob's neurosurgeon intimated that all roads would lead to epilepsy surgery whether we decided to proceed with additional drug trials or wait and see if Jacob's seizures became more severe. Although Jacob has significant developmental delays, he did not regress after he was "cured" of Infantile Spasms. He came back to us and we were unwilling to experience losing him ever again.

There is no cure for brain malformation however. The point of this seemingly pointless story? I unequivocally believe that every single 1 of the children who develop IS as a result of a brain malformation should be considered for epilepsy surgery upon diagnosis.

What are your thoughts?

Dip Dip

Jacob's swallow study was this morning and he does not appear to be aspirating food or liquids. He does appear to be eating everything however as long as it's been dipped in thousand island dressing. He has started an antacid "drug trial" to see if acid reflux is creeping into his lungs.

He has been on breathing treatments every four hours except at night (which would be a six hour stretch when he wakes in the middle of the night and ends up in our bed AGAIN) for about three months. He has an ear infection. He had one about six weeks ago. His oxygen level in the doctor's office this week was in the low 90's, which is stable but upsetting because he used to register at 100. We will see the pulmonologist again in two weeks to discuss what to do.

Pointless Story Part II

I was definitely shopping around for brain surgery. I had seen Jacob's MRI. I was convinced that the only explanation for how well he was functioning with seizures was a healthy right hemisphere. I hated the left hemisphere as if it was a parasite rather than a part of Jacob. I would have pushed for surgery sooner except that we were told that Jacob would have to fail at least two medications before a neurosurgeon would even look at him. When Jacob was switched from Phenobarbitol to Depakote following the EEG in February 2010, I started pushing. Jacob's MRI convinced Boston as well. I cancelled our appointment with Detroit for a few reasons - Boston, travel and expenses, and Constraint Therapy II scheduled during the time that Detroit would see us. Boston was not interested in doing any additional testing (not even an EEG), which was a source of anxiety for me.

I rewind, fast forward, and play all of the time to be sure that I am acting on behalf of Jacob and not my own anxiety. This is a monumental task and as I wrote in Part I, hopefully I have been in God's hands.

Pointless Story Part I

I feel like telling a story and like all of my stories it is told through my tired eyes, my own experiences, and my own perceptions. Jacob has always been in God's hands. Hopefully, I have been too.

I created this blog, originally titled "The Jacob Fund", as an informational website for a benefit held in December 2009 to raise money for Jacob's Constraint Therapy in February 2010. I documented his daily progress in the program to share with everyone who supported our family. The blog was intended to be hopeful. I did not intend to interject my own feelings. However, during the Constraint Therapy, Jacob began to show increasing signs of seizure activity and I was scared. I was scared because Jacob continued to have seizures after his Infantile Spasms were resolved in June 2009.

The blog was not intended to be about epilepsy and as such most of Jacob's seizures are not documented here. This I regret. I did not take videos of Jacob's Infantile Spasms because they came on so fast and within a few days he was diagnosed and admitted to the hospital. By the time we were discharged, I don't remember if we were still seeing the spasms. I do remember our first follow-up EEG two weeks later. It was still showing Infantile Spasms but it was improved from the first EEG. And two weeks after that, the EEG pattern had resolved.

I have dozens of videos from June 2009 until his surgery in December 2010. I posted one. Jacob's EEG in February 2010, during the Constraint Therapy, convinced his neurologist that he was having seizures when my video did not. The EEG report stated "Infantile Spasms imminent". To read those words... difficult to process, reality is lost. The surgical consult became my reality.

My coping strategy was to stay up late and read and I came across a number of blogs that mentioned Detroit and a Dr. C. I read an article by Dr. C and decided to email him about Jacob. He graciously offered to review Jacob's medical records so I sent them and within a few weeks his assistant called to schedule an appointment. We also had an appointment in Boston. My thinking was that in the event that Boston rejected Jacob, we would go to Detroit. I had never been resigned to medicating Jacob for the rest of his life.

My tired eyes are "wrinkly" as Matthew says when he is sleepy so this seemingly pointless story... to be continued...

Transition

Jacob is special. We surround him with people who know that he is special. He is the center of attention. He is never ignored. We celebrate everything that he does. So I should not have been surprised when he went BERZERKO at a birthday party last weekend during the Star Wars themed yoga instruction. There were children younger than him, older than him, the same age as him, and he was the only child yelling "ME ME ME" and chasing after the instructor and walking all over the other childrens' floor mats. But I was surprised - pleasantly surprised to see him so engaged. When it was time to jump, he stomped around. When it was time to run, he squealed and turned in circles as the other children ran by him. But he was run over a few times and one little girl didn't like him on her floor mat so she pushed him off. He doesn't know that he is special in a disabled sense. Most people don't know, which brings me to a conversation I had with Jacob's Early Intervention service coordinator during our first transition meeting - Jacob's transition to the public school system.

Jacob has always been a paradox. No one would ever believe that the Jacob at the Star Wars birthday party had a left middle cerebral artery infarction, infantile spasms, or a left functional hemispherectomy. He has made significant neurodevelopmental progress, which did not happen by magic, but by blood, sweat, and tears (literally) and medication. One of my concerns about transition is how much "progress" will determine the frequency of Jacob's therapy once he turns 3 and begins attending the public schools. Jacob's progress also includes mechanisms by which he compensates for or mediates his disabilities. To me, this is more a measure of functionality rather than true ability. For example, he has begun to combine thoughts.

Jacob - Mommy

Me- Yes Jacob

Jacob - Jhuvoh (shovel)

Me - You want to shovel?

Jacob - Yah

Jacob - Mommy

Me- Yes Jacob

Jacob - Dig dig.

Me- You want to dig outside with your shovel?

Jacob- Yah. Me.

Me- Okay, when we get home.

Jacob - Mommy

Me - Yes Jacob

Jacob - Jhuvoh

Me- Okay Jacob. When we get home we'll go outside and play with your shovel.

This may be very similar to combining words but he still needs speech therapy. He still needs physical therapy and occupational therapy. He is special AND he is disabled.

Whose Been Sleeping In My Bed?

Since I don't label my own posts, I had to search through the archives to find when Jacob first slept through the night in his own crib. It was last May when he was 19 months old. By October, he was sleeping in our bed again which prompted us to finance a king-sized bed for Christmas.

Jacob is an enormous two-and-a-half year old. He is restless in his sleep, often laying horizontally with his toes searching for bare skin or warm crevices like butt cracks. And so, the king-sized bed has grown smaller and smaller and I have relegated myself to the couch.

But last night, Jacob reluctantly slept in his crib. And again tonight. So I have reclaimed my side of the bed.

Sweet dreams.

Happy 4th Birthday Trevy - my inspiration for changing the course of Jacob's life.

50 + words and counting

The following is a growing list of words that Jacob has initiated on his own. According to his speech therapist, children begin to combine words after they have acquired about 50. Cover the right side of the post and see if you know what he is saying...

titten - kitchen

dahree - sorry

mimmen - mitten

boo - boot

hehheh - potato head

boobee - pirate booty

bubbah - butter

ahppah - apple

eehr - ear

meewmeew - oatmeal

opah - open

hah - hat

haah - hot

bubboh - bubble

eheh - no

mahr - more

hoohoo - train

baa - back

dahdih - jacket

mahn - come on

inair - in there

owee

dipdip

digdig

hi

beep

bye

yah

yup

baby

momma

mommy

dada

brubruh - brother

my - Matthew's blanket

mine

me

up

in

on

help

ball

uhoh

eat

tzee - cheese

nannee - candy

nana

papa

gampa - grandpa

memme - grammy/grandma

deedie - Miss Edie

nahnah - Miss Hannah

eye

done

ah - ice cream

yay

wee

tahteh - thank you

pee - please

beh - pen

row

roh - roll

pehpeh - paper

bebe - binky

bih - big

At Least It's Not CF

"Let's stop calling it pneumonia and call it what it really is - ectasis." The pulmonologist explained that mucus trapped in the airways would produce a cloudy X-ray and that Jacob's X-ray series showed a moving cloud, which was not pneumonia but mucus being moved around by the air in his lungs. He believed that Jacob's first pneumonia was viral because of his persistent fever and how long it took before Jacob seemed to rebound even though he was on intravenous antibiotics. He also does not believe that Jacob has asthma because he has no allergies.

Ectasis or bronchiectasis is a lung disease with an underlying cause. The pulmonologist ordered a swallow study to determine if Jacob is aspirating liquids. If the test is normal, then we will need to rule out acid reflux. Then we will have a follow-up appointment in six weeks. In the meantime, Jacob will continue to have breathing treatments (Flovent and Ventolin inhalers) and I will consult with Early Intervention (heads up EI Team) about chest physical therapy.

How many times did I ask for a pulmonary doctor during our hospitalizations? How many times did I suggest that there was something structurally wrong?

All Doot

Jacob's hemispherectomy was three months ago and I have not seen any evidence of seizures. I will never forget the devastation of looking into Jacob's vacant eyes. But I often forget that he is functioning with only half of a brain and truthfully, he probably was before epilepsy surgery.

I am so proud of him and so happy for him.

Hurray!

The sweat test for cystic fibrosis was negative. Phew. Aspiration, asthma, or a resistant bacterial pneumonia are still suspects. We'll be looking for more answers on Friday when we see a pulmonary specialist at Hasbro. Jacob is still on an inhaler and on breathing treatments 4-5 times a day because he is still coughing, his breathing still sounds like rice crispies, and his chest still feels junky.

Before, Before, Before, and After

The following movie includes a clip from each of Jacob's pre-therapy evaluations (February 2010, August 2010, and February 2011) and a clip from his post-therapy evaluation last Friday.

Constraint Therapy is regarded as an experimental treatment and therefore is not covered by insurance.

Answers

Matthew began attending a home daycare when he was 18 months old and during that time before he started preschool this year, he had a string of ear infections, pink eye a couple of times, the flu, and a number of colds. We just tell him to eat his vegetables.

Jacob also had a string of ear infections from when he was about 12 months old but he was only one shy of tubes in his ears. He started daycare in a preschool this year and after a few weeks, he had a cold that developed into his first pneumonia. And his second pneumonia developed a few weeks after when he had returned to daycare. And his third a fourth pneumonias developed after he returned to daycare following neurosurgery. Exposure to other children however explains how but not why. So we are again looking for answers and I hope that he is just one of those children who grows out of being sick all of the time.

Next week, Jacob is scheduled to have a sweat test to rule out Cystic Fibrosis. It is an unlikely possibility, but my sister found that she was a carrier for the gene involved so I felt that for my own peace of mind I needed to know that Jacob is unaffected. We also have an appointment with a pulmonary specialist at Hasbro at which I will request a swallow test to be sure that Jacob is not aspirating, or swallowing down the wrong pipe - a possibility given his right hemiparesis. Another possibility is that his asthma treatment plan needs to be reassessed. Hopefully we will have some answers within the next few weeks.

Apart from the antibiotics and breathing treatments, Jacob is still flourishing. Constraint Therapy III will be over in three days and I am excited to see his post-therapy evaluation.

And he has finally said "o-pah".

OPEN!

Pie

Special Agent Oso

Sometimes I believe in magic and sometimes I don't. Jacob was born on 10/10/2008. He was admitted to the hospital with pneumonia on 10/10/10, which postponed his surgery. The first incision was made at 10:10 am on 12/22/10, which is the birthday of my dear friend Zinovia's son Christopher. Coincidence perhaps but I am receptive to magic.

As I was driving yesterday, a whisper went through my mind. Vaccine. Although in October, we suspected that the FluMist vaccine may have been the underlying cause of Jacob's pneumonia, the health professionals we encountered dismissed our suspicions. And so did we.

But today I reviewed the following product information...

---------------------WARNINGS AND PRECAUTIONS----------------

· Do not administer FluMist to children [less than] 24 months of age because of increased risk of hospitalization and wheezing observed in clinical trials.

· FluMist should not be administered to any individuals with asthma or children [less than] 5 years of age with recurrent wheezing because of the potential for increased risk of wheezing post vaccination.

... and decided to send the following email.

Dear Sir or Madam,

My son Jacob received the FLUMIST vaccine last September. He was 23 months old and had a brief history of wheezing. Within a few weeks, he developed cold-like symptoms and was prescribed an inhaler. Shortly after, he was admitted to the hospital with pneumonia and stayed for about five days. After finishing a course of antibiotics at home, he developed pneumonia again for which he was hospitalized and treated with antibiotics. He had attended daycare in the interim between pneumonia infections, so after the second infection, I pulled him from daycare because he was scheduled to have neurosurgery in December. For six weeks prior to surgery and about 4 weeks after, Jacob remained healthy. Then he began to develop cold-like symptoms again. He returned to daycare and within a week he was diagnosed with a mild strep throat infection. After finishing another course of antibiotics, Jacob was again diagnosed with pneumonia but because we had caught it early, he was able to go home with us and resume antibiotics. Shortly after this course of antibiotics was finished, he was admitted again to the hospital with pneumonia. After just finishing another course of antibiotics, Jacob has now been diagnosed with an ear infection and is on antibiotics again.

I have read the information online about the vaccine but I have a few specific questions that I could not find. Is it understood exactly what about the vaccine or the body’s response to the vaccine that might cause respiratory distress or infection? Could it be that Jacob may have been exposed to influenza virus strains at daycare that are included in the vaccine and that when his body goes to mount a response, his immune system in effect attacks his lungs? Is there something about the vaccine or the body’s response to it that would leave his lungs “compromised”?

The first response that was sent included the same product information that I had already read so I sent a follow up email and this was the response...

Our policy is to answer complex medical questions for health care providers. We are able to discuss very complex questions with doctors, nurses or pharmacists who have the knowledge to understand scientific literature and know the complete medical picture of the patient.

Apparently I do not have the knowledge to understand very complex medical questions.

Jacob is feeling better.

Good News and Bad News

Jacob saw his neurologist today and since we believe that he has been seizure free since his surgery, we will be able to start weening him off of his medication in September. Dr. B also had no concerns about his cognitive development. But Jacob was not himself because...

... he has a double ear infection and once again he is on antibiotics and breathing treatments because there is a relationship between ear infections and asthma and pneumonia. His pediatrician did not feel that he had pneumonia again because his oxygen level was still in the 90's. Thankfully Jacob had been saying "eeyah" in the car so I knew to have her check his ears. We should be hearing from the pulmonologist by Wednesday to schedule an appointment.

His newest word is aahpple and he has been singing row, row, row.

A Post from Chaotic & Comfortable

To You, My Sisters

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked ..."

Nebulizer

Jacob was hospitalized a few week ago with his fourth pneumonia infection and this past Wednesday he finished his antibiotics. By Friday, he was coughing again and his chest was becoming junkier and junkier. He had a low-grade fever which we have been able to manage with a dose or two of ibuprofen each day and he has been on breathing treatments every four hours day and night. On Friday we had his pediatrician refer him to a pulmonary specialist at Hasbro. We saw a specialist in Boston prior to Jacob's surgery but I was disappointed to learn that he had no experience with or knowledge of how prenatal stroke and hemiparesis may have affected Jacob's respiratory system. The environment may be a catalyst given that Jacob remained healthy when he was quarantined at home with me for the six weeks following his first pneumonia until his surgery. And while in Boston, he was intubated and extubated and intubated and extubated and I was deathly afraid that he would have pneumonia because his chest was junky but he remained healthy for the four weeks he was home with me after surgery. He has been exposed to other children with respiratory infections - the cold. His brother along with every other child at daycare or in public has coughed all over him. But what makes him so susceptible to developing pneumonia while all the other children get a raspy voice and a snotty nose? Part of me wonders if it is related to the actual treatment he has been given for pneumonia. It must be bacterial because he improves every time with antibiotics. But if the bacteria are not eradicated, then when he finishes his antibiotics, the pneumonia returns. An X-ray cannot show whether a pneumonia infection is the same as the last or a new one and to suggest that it is the same means that the hospital and the doctors were ineffective. When Jacob was healthy, he had been treated at Hasbro. So if Jacob is unable to fight this on his own, Hasbro ER is where we will go.

iPad Giveaway

I entered Jacob in a special needs iPad giveaway through another blog - Marissa's Bunny. Requests are going to be accepted through the 18th so share your story if you are a special needs parent or consider chipping in.

The original post has all of the details as well as links to any updates...

Sorry

Since it takes less time to post an entry than it does to find the video camera and charger... Jacob fell on Sunday - actually he flew across the kitchen floor and twisted his ankle. He has been at even greater risk for falling since then so after I pick Matthew and Jacob up from school, I am either closely guarding Jacob or holding him. Much like a year ago when Jacob was first leaning to walk. I discussed Jacob's falling with his pediatrician because I am beginning to feel like even though it is inevitable, it is not acceptable. He is a force in motion. He has momentum. How do I protect his little body? I don't have the answer because he will only develop the ability to walk and to fall gracefully by walking and by falling.

Charged

Our video camera battery is dead, otherwise I would have posted a video of Jacob attempting to replace the toilet paper roll. To me this is significant because I have never seen him truly maintain his grasp on an object independently. His hand is weak but he has some real power in his arm. I heart Constraint Therapy even though I have been tempted to remove the cast at times. Guilt. Have I gone too far, expecting too much of this small person who is still dealing with the effects of pneumonia. Laziness. Jacob did not volunteer for Constraint Therapy. We have to consider which of his life activities we need to do for him and which we need to do with him. We have to maintain his two-year-old sense of dignity. I will be sure to post videos this week.

Where will we go from here?

While driving home from our night out at the Tropical Pirate Bar, Matt and I were discussing our plans for Jacob. Linda, his occupational therapist from Hasbro, commented that Jacob's wrist seemed a lot tighter than when she had worked with him a year ago. Jacob's Early Intervention therapist had ordered a brace for him to wear in order to extend his wrist while extending his fingers. Try this at home... Let your wrist fall limp and then bring it up while letting your hand remain limp. Your fingers should have curled inwards. Jacob's brace is supposed to stretch the muscles of the upper side of the forearm to help him lift his wrist AND keep his fingers extended. But I have been lazy about putting the brace on him. So now he wears it at daycare during naptime, in between his Constraint Therapy sessions. This weekend, I'll start putting it on at night as well. If at the end of Constraint Therapy, his wrist is still as tight, then I will be bringing him back to see his orthopedist. I hate to say it but if stretching and exercise don't do it, I would consider alternatives. I am not on a quest to make him perfect. He already is. I am all about removing barriers. He has exceeded everyone's expectations from when we were given a prognosis at 7 months old. As long as he has the will to do and to be, I cannot allow his anatomy to fail him, like a broken half of a brain that is now inconsequential.

Constraint Therapy III Day 1

Since most of Jacob's therapy will happen at daycare, there won't be a daily video of his progress.

Jacob was discharged from the hospital yesterday morning but we still decided to proceed with therapy today. His recurrent pneumonia was likely brought on by his asthma. We have to maintain his breathing treatments even when he doesn't seem very sick because one thing that I've learned about Jacob is that he is not what he seems. Anyways, I will post Jacob's pre- and post-evaluations and video that we take at home when he is not in therapy.

Irony

This boy made it through 6 hours of brain surgery without complication. But once he catches a cold, he catches pneumonia. Jacob is in Newport Hospital again. He was restless in his sleep last night and woke up around 1:30 am with a fever, 102.4. He was breathing quick and heavy and had been grunting, which I thought was him trying to poop but I think he was just having trouble breathing. Anyways, I got up and brought him to the ER because I knew he needed to be on antibiotics sooner than later. His overall condition is fine however. He has not spiked another fever since he was admitted and has not needed to be on oxygen. Just antibiotics and breathing treatments every 4 hours. His chest sounds pretty junky. Hopefully we will be discharged tomorrow with clear instructions about how to proceed with his care...

One more thought... I am upset and angry about all of this. I have taken Jacob to the doctor twelve times since October. He has been diagnosed with pneumonia four times and has been hospitalized three times. I know when Jacob is sick just like I knew when he was having seizures. I dedicated a year and a half of my life to annihilating his seizures and even though pneumonia has eluded me, I will kick its ass too. If only it was that "easy".

A Normal Life

Jacob goes to daycare tomorrow with some congestion and a diaper rash. He has fallen several times since he has been home with me for the past week. Twice he walked into the doorway leaving an egg on his forehead and twice I watched as his right leg or knee went out from under him and he fell forward. He now has bruises on his forehead, his chest, and his right knee. He is refusing to nap unless he is exhausted so I think fatigue has something to do with him falling as well as his right visual field loss because I have not seen any other neurological signs. In fact, he is pushing up on us to stand in our bed which he has never attempted before because our bodies don't offer much height or support for him to stand and the bed is not a sturdy surface. This is great because he is working on standing from a sitting position on the floor without pulling up during PT. Speech is great too. He is saying goot (good) and whoa and mamme (grammy). For sure, if you are not trained in Jacob-speak, you wouldn't know what he was saying some of the time but you would know that he was trying to say something. Jacob's incision is completely healed now and we are getting ready for Constraint Therapy III to begin next Monday. I feel like this will be the last time because it is so expensive and as Jacob gets older I can't use the "he won't remember" excuse. The therapy is not painful or anything and he adapts without his left hand which is the point but it restricts his overall activity. I guess it will all depend on the gains he makes this time around. A month of therapy for a lifetime of functional use is definitely worth missing swimming lessons or letting Mommy and Daddy help with eating and drinking. We are so close to having a normal life, not without therapy, but without having to choose extreme or radical or experimental measures. Last night we booked our plane tickets for August to see Uncle Jeff and Uncle Chris and Auntie Dianne in Seattle and Auntie Allie, Uncle Lyle, and Cousin Cole from San Diego are going to join us there. A normal life - making memories for our own children and establishing a new sense of family because we are adults now even though we remember eachother as children.

The Story of Pneumonia

No fever. Coughing. Crackling. Raw bumbum. Great sense of humor. Jacob's speech is still improving. I love to hear him "label" things without prompting. We have always been able to communicate with him but his own use of words gives him his own intentions, personality, character, rather than what we would assume those things to mean for him. One word at a time.

Guess What

Pneumonia again. Seriously.

The Tropical Pirate Bar

HEP

I was thinking about going to CVS to pick up our prescriptions when I decided to side-swipe a moving vehicle in the parking lot of Jacob's daycare. Apparently I was texting because my head was down. But I wasn't. I don't text. If my head was down, I was probably asleep because Matthew decided to wake me up at 4 am this morning. I don't know where my head was. A little paint off the front bumper to match the rear bumper after parking at Hasbro Children's Hospital in October...

Jacob said hep today as opposed to heh for help. And he is bringing the syllables oh and pen oh so close together to say open. We have been working on this word for months and months. He is also saying buhbroh (shovel) because he likes to clear snow from the driveway with all of us.

Tomorrow? I can't wait.

"Hope in One Hemisphere"

Reprieve. Not since before Jacob was 7 months old. But the past few weeks have been different. Desperation is replaced with laughter. Fear and anxiety are diminished. Jacob is thriving. Since surgery, he is initiating the words hi, owee, mommy, daddy, brubru (brother), maymay (mayonnaise), tehteeh (thank you), baah (sheep), yup, and up. He used to say puh for up and bah bah for bye bye but after surgery he is even annunciating the words. At this time last year, my goal was for him to say mama. My goal for this year is for him to combine words and to annunciate all of his words.

About a week ago, I had the sick to my stomach feeling when I observed over the course of a few days that his eyes were just not right. Even though his EEG in Boston showed no epileptic activity, Jacob had a 72-hour EEG shortly after his Infantile Spasms that showed no epileptic activity but he was having seizures. His neurologist said that they may have been coming from "deeper structures".

I am hoping that if I did see seizures that they are remnants from a healthy brain picking up the pieces. Otherwise, why have children remain on anti-seizure medication for 6 months to a year after surgery if there is no epileptic activity? The naughty tissue in the left hemisphere worked tirelessly to dominate the rest of his brain for so long. And when I studied the EEG in Boston and thought the tissue in the left hemisphere was producing pathetic electrical discharges, I was wrong. The tissue is pretty angry in isolation.

Jacob's surgery was over a month ago. If not for his scabby incision, who would ever know? His recovery is fascinating to me. One half of a brain for all of this boy. No regrets.

Snow Day at Daycare

Constraint III

Jacob will begin Constraint Therapy III on February 21st. Since we both have missed so much work this year, we decided to have Jacob's therapy at daycare. He will have a constant companion throughout the day and will be in an environment that he loves. When we were home with him during therapy, we had to escape to the kitchen or the garage. Otherwise he would call for us all day so we think this will be ideal for him.

I really did think the first time around that after 21 days, Jacob would be able to use his right hand as if nothing had ever happened to him. Once I started researching however, I realized that once would not be enough. Jacob is different than a typical stroke survivor in that his left hemisphere never established pathways for the function of his right arm and hand because the brain tissue did not exist. There was nothing to re-learn. He was learning from scratch, which is why the first round really helped him to recognize that he had a right arm and hand.

Now after surgery, it is evident that his right hemisphere is responsible for the functions of the right side of his body because apart from increased muscle weakness, Jacob is functioning as he was before surgery. The second round helped him to recognize that he could use his hand in a purposeful way and he has been able to maintain this after surgery. It was a gamble to have him participate in Constraint Therapy II knowing that in only a few months, his left hemisphere would be disabled, and we might have wasted all of that money. But we believed in the science and we believed in Jacob.

Even if Jacob never has independent use of his fingers, I know that going another round will improve his function.

School

Where did my Mojo go? I have been teaching for 11 years and today was like my first day after being out for the last 10 weeks. Time to dust off my brain and find it.

Jacob had a fantastic day at daycare. When I came to pick him up, he showed me the toys he was playing with. He was talking to his teachers and classmates with his gobbley-gook words and gave hugs goodbye. And he was so tired from his very busy day that he fell asleep on the car ride home. Just like old times.

Jackpot

I've been reluctant to say so because it's only been 3 1/2 weeks since surgery, but Jacob is doing GREAT! The only seizure-like thing that I've noticed is some twitching of his right arm. In the past, it had always been accompanied by darting eye movements but I've been watching and haven't seen any. I am seeing all Jacob all of the time. Epilepsy surgery is a calculated risk and I feel like we hit the jackpot.

I remember in February when Jacob had a 6-hour video EEG and the results read "infantile spasms imminent". We were given the choice of another round of ACTH or Depakote. I asked what the most aggressive treatment was... ACTH. But Jacob's neurologist felt that we should try Depakote first and if after 3 weeks Jacob's EEG did not improve, then we would try ACTH again. Matt agreed. And so did I. And after 3 weeks, the EEG had improved and we never saw the spasms. But we did see other seizure types. And this is why we asked for a neurosurgical consult and began our hemi-journey.

Before surgery, Jacob already had right hemiparesis, a right visual field deficit, and delayed speech as a result of his stroke. He didn't have much to lose going into surgery except for seizures.

Regarding my last post - I hope that it did not read as if Matthew or Jacob are ever a burden to me. Time is my only burden.

Rambling

I am feeling overwhelmed, not for any particular reason. I have a lot of support for sure. Today was the first day that I brought Jacob to drop Matthew off at school and to pick him up. My mother and father and mother-in-law and brother-in-law have all been doing this for me since we came home from the hospital.

Jacob is improving every single day. When we first came home, he could barely stand on his own and walked only when I held both of his hands. Then he could walk holding one hand. Then he could walk on his own. He has difficulty transitioning from one position to another but still he pushed himself up from laying down to sitting today. In an older post I went through the painstaking process of Jacob climbing up stairs. So many different muscles have to fire in order to do the simplest of movements. And as I said before, Jacob wills his little body to do so.

Matthew has always been a priority but I am concerned about his perception of the things in his world including himself. So we signed him up for karate lessons and swimming lessons and threw him a fabulous Beach Bounce birthday party. I want him to be filled up inside. We often tell him how proud we are of him for being helpful or sharing, for being a big boy staying dry all night, for being a good big brother. I tell him that he's a good singer, that he has great ideas, that he can jump so high and run so fast.

But I find myself begging inside for these small people to go to bed or acting like a crazy person because Matthew is spitting everywhere or Jacob is refusing to eat his dinner. I am always hoping that I will overcome my own exhaustion and anxiety so I can do better the next time. Maybe I'm overwhelmed because I am just a regular person. I gossip. I speed. I watch reality TV. I get angry and upset. And if not for all of the support I have, I wouldn't even have the time to reflect.

Maybe I'm overwhelmed because our time in Boston has finally caught up with me - a delayed reaction now that everything is all better. Now that there is nothing to be afraid of or to worry about really.

I just can't put my finger on it.

The Last Week

Our last week-and-a-half together. Mommy has to go to work soon. After Jacob's post-op appointment next week, he will go to daycare. We went last week to have lunch with his class and it was as if he had never left. He has been making steady progress and has been willing to squat and to get on his knees and to sit down. He still needs help pulling up to stand and if he squats too low, he needs help getting back up. It seems counter-intuitive but I feel that he is just as or less likely to fall as he was before surgery because he knows his body is different now. He does not take risks, he is conservative, even tentative about his movements.

Work is good for me. And daycare is good for Jacob. But he is... lovely.

I ordered three of these union suits for Boston but they never worked out because of the IV's and because Jacob's tender body would not easily bend to get into the suit. But damn it he looks good in it now!

Post-Op

Two weeks post-op and Jacob has started rehab and will resume Early Intervention. He is able to stand and to walk with or without support, depending on how he is feeling. His muscles are angry with him so he is not able to pull up to stand or get to his knees or squat to sit. He is using his right arm and hand as an assist and we are considering Constraint Therapy III. He has not had a fever in a few days and I made a special trip to Boston to check his incision which was getting pink and puffy, but it is not infected. He has had two baths since we've been home and finally all of the glue from the EEG is off of his head and out of his hair. His hair is unruly and had I known they weren't going to shave his entire head, he would have had a haircut before surgery. Hopefully, his hairdresser will be brave enough... When I have the energy, I'll post all of the pictures from our vacation on the Neurosurgery page. One is there waiting already.