Friday, December 31, 2010

1-1-11

Whoa! It's New Year's Eve already? I was in labor at this time 4 years ago...

When Jacob was born, I knew my baby Matthew was becoming a little boy. Matt and I swear that he grew in the few days that we were in the Birthing Center. His butt was enormous compared to our new baby Jacob's. Matthew is my first-born, my New Year's Day gift. We rolled on the carpet together, crawled all over the place, played with every toy that was ever made. I sang him to sleep, danced with him until he leaned towards his crib, kissed him all over. I love this little boy.

Home Sweet Home

We were discharged at 5:30 pm yesterday. We felt that there was no reason to keep him there overnight just to have IV fluids. We weren't planning to let him dehydrate and to kill him. He was able to take a few steps at the hospital while I was holding his hand but sure enough after we were home he didn't want anybody to help him. But he needs help. His muscles are very weak. He's only been walking since February so we remember what it was like to guard him closely and pick him up all the time. He can sit up on his own so the challenge will be to make sure that he is happy and stimulated and to push him without overdoing it. He will be able to start rehab next week. He will continue to take his anti-seizure medication until his neurologist thinks it's time to wean and then I will be asking for another EEG to be sure.

Wednesday, December 29, 2010

The EEG patterns were non-epileptic. Jacob likely will go home tomorrow. And they lived happily ever after.

903B Northeast

The IV went back in yesterday afternoon and Jacob is scheduled for an EEG today. He has been running a fever off and on so they took blood for a culture and so far no infection. He is eating and drinking but not enough. He is still sleeping most of the time. The EEG is to see if Jacob has been having seizures since the surgery and to decide if he needs to be on a different medication. My theory is that he has phantom brain like a phantom limb after amputation. His right hemisphere has over-compensated for the left and now that it is gone, maybe the right is behaving as if the left was still there. Just a theory. At least we will have some answers before we leave the hospital instead of going home and being in constant paranoia over seizures. I would rather have watched Jacob's surgery, scalp, skull, brains and all, than see him having a seizure.

Tuesday, December 28, 2010

December 28th

A slice of toast with butter, an ounce of apple juice, and a sip of water and milk. We are recording everything Jacob eats and drinks. They monitor intake by our records and output by weighing Jacob's dirty diapers. When he meets their guidelines, he will be able to go home. He had physical therapy yesterday, really just playing with toys to see how far he is from his baseline before surgery. They have decided that he will need outpatient rehab when we go home which is what I expected. It's better than inpatient rehab. Jacob has moved his right limbs but he seems to be ignoring his right arm again and lets it hang limp at his side. But he can move it especially when he is agitated and wants to push the therapist or nurses away. He started closing his eyes and pretending that he was sleeping when they come around. He is still very weak all over. Very unsteady although he tries to sit up on his own. Once he is home we will spend a lot of time playing on "the big bed". I bought us a king size bed for Christmas because Jacob is still sleeping with us and Matthew sometimes wants to join in. Now we all fit together. I had to cram myself into Jacob's crib last night to help him sleep. It was actually more comfortable than the pull-out chair believe it or not. We also have a roommate now. Very strange to share a hospital room but last night went okay. Just another experience.

Monday, December 27, 2010

December 27th

Jacob had a great night. He's back on Tylenol and had a dose of morphine this morning when his drain tube was REMOVED and he was stitched back together. He's sleeping now and Matt went home to plow with Matthew. Jacob's IV was also REMOVED and we are recording how much he eats and drinks. If he maintains his fluids, he may be able to go home in a few days. They had told us 5 to 7 days and Wednesday will be the 7th day!

Sunday, December 26, 2010

December 26th

The day after Christmas is both my mother's and my father's birthday. Matthew Jr. thinks that getting older means you're going to "make the cemetery". Happy Birthday Mom and Dad!

Jacob has had a rough time since we were transfered to the 9th floor. He has been running a fever and has needed a low dose of morphine to manage his pain, which has had an effect on his heart and respiration rates. He is comfortable but needs some "blow-by" oxygen. We saw him have seizures in the afternoon while he was eating his grilled cheese and drinking apple juice and milk. It lasted for about twenty-minutes where he would appear to have a blank look on his face and then his eyes would travel to the left corner of his face. In between, he would continue eating and drinking and would talk to us. His body and especially his left hand was also trembling. Jacob's neurologist had said a few weeks ago that we should not be surprised if Jacob had seizures following surgery and neither the nurses or the neurosurgeons are particularly concerned. My guess is that his body and his brain are in a state of "what the f*** just happened" now that the anesthesia has finally worn off. His right hemisphere isn't getting any signals from the left anymore and is realizing that it has to take-over. This is just my guess. As long as he is stable and comfortable... and I haven't seen any more seizures since.

P.S. I have held his warm chubby body twice!

Saturday, December 25, 2010

Christmas

Jacob is off the low flow oxygen and his head drain has been moved up higher. It will probably be clamped off by the end of the day. He was moved from the ICU to the 9th floor this afternoon. He has been saying be-be (binky) and Momma and Dadda and yah and uses his left hand to gesture towards his blanket or the t.v. He is napping right now and when he wakes up, we're going to see if he wants to eat a grilled cheese sandwich. Milkshakes will be next... Following the surgery, Jacob had 3 doses of morphine and then nothing for nearly 32 hours because he wasn't able to breathe on his own and narcotics would suppress his bodily functions. Once the breathing tube was removed and after he showed some discomfort, he was given tylenol. 2 doses so far. Unbelievable. His pain seems to be at a level that he is tolerating well.
Matthew Jr. and I slept over Nana's last night and woke up at 5 am to open presents. He was so sad when I said I had to get going. He held on to me and cried and then shrugged it off as best as he could. I know he understands but he is having a hard time coping. Hopefully today will fill him up inside because he gets to see nearly everyone that he is related to on our little island. Santa went to his house too so he has something to look forward to when he goes home with Daddy tonight.

Friday, December 24, 2010

The breathing tube and catheter are out. Jacob is still on low flow oxygen. He is awake and aware but not particularly alert. He's watching Caillou on t.v. getting ready for his brother to come visit.

Christmas Eve

There is more talk about removing Jacob's breathing tube sometime this morning. They were waiting for him to thrash around to be sure that he would stay awake enough to breathe on his own but I explained that he is not a trash around kind of kid. He has been awake for much longer periods of time since last night. He is aware. He is upset but consolable. They are also talking about weaning his head drain, which means they will place the outlet for the drain above the level of his head so that his body will have to start doing the work of absorbing extra fluid rather than letting it drain right out of his head. It sounds worse than it is and we can't see anything but a tube and some fluid so it's not as gross as it sounds. So overall, recovery is still going well, moving in the right direction. I almost forgot that he did move his right arm this morning so he may have some extra weakness on his right side after we get home but everything is still working.

Matthew Sr. and Jr. had a sleepover last night and tonight is Mommy's turn with Matthew and Daddy's turn with Jacob. Matthew said he missed me and said "I love you poopy face, stinky butt". Everything is as it should be.

Thursday, December 23, 2010

Awakening

I was restless in the morning. I was agonizing over our decision. I decided that we could change our mind at the very last minute if we wanted to. On the ride up, I asked Matt if he was having second thoughts. He said no, what about you. I said yes, every second. Once we got to the hospital, I regained my strength. I knew we were doing the right thing for Jacob. He would have to forgive us. Maybe he would thank us one day. But once Jacob was taken away, I clung to Matt and sobbed. He said that we had to be strong for Jacob. And we were.

When I woke up today, I couldn't believe what we had done, but not in a regretful way. Always a mix of emotions.

Jacob moved his legs this morning and squeezed my hand some more. They will probably remove the breathing tube this morning. He has opened his eyes ever so slightly. He just needs the pain medication and rest for now.

Wednesday, December 22, 2010

Jacob has not fully waken yet and is still using a breathing tube, although he is doing some of the work on his own. He did squeeze my hand and nodded yes but he has not opened his eyes. His face is not swollen at all. He looks like a little angel sleeping. I'll post pictures eventually...
Jacob is done. No transfusion. Only about 2 ounces of blood lost. MRI scan shows complete disconnection. We haven't seen him yet...

Tuesday, December 21, 2010

< 1 Day

Left functional hemispherectomy scheduled for 8:30 am tomorrow at Boston Children's Hospital. I feel... confident. Matt Sr. is having dinner with Matthew Jr. at Grandma and Grandpa's house. Jacob is napping. I am blogging and doing laundry and thinking about what Jacob is going to eat for dinner. I have had migraines for the past few days which must be how my body copes with stress because I feel... detached, as if I am preparing to do the surgery myself. I do not feel relaxed but there is something soothing about making a list and checking it twice - packing overnight bags for Matthew Jr., packing a bag for Jacob, packing a bag for Mommy and Daddy, packing, packing, packing... I feel... anxious. I will post again tomorrow afternoon. Thank you everyone for your hugs and kisses and emails and comments and cards and phone calls and Facebook status updates. We feel you wrapped up all around us.

Friday, December 17, 2010

5 Days

Nana asked me how I was feeling. I said I didn't know. I don't think I will know exactly until Wednesday. I do know that every morning after I drop Matthew off at school, I am overcome for a moment with a mix of emotions. Many times I am overcome when I think about all of the friends, family, and strangers to me who are thinking about Jacob, who are praying for Jacob. I think about God all of the time. I believe that his plan for Jacob is to be my teacher, to show me what is possible, to show me what is important, and to show me who I am. Sometimes I am overcome by the thought of what I will never know. But only for a moment. I have to drive. On Wednesday I can be overcome but for now we have to attend to life. By the way, I told Matthew that Jacob will be in the hospital next week and he said, "but then I won't have a brother." Then he wanted to know who he would be staying with and what Jacob was going to the hospital for. I said that Jacob had a boo-boo inside his head. Matthew asked if they were going to fix his balance then. I said yes. He said how. And I said with special tools in his ears and nose. What to say?

Monday, December 13, 2010

Pre-Op

Three-and-a-half hours later, we are moving forward with surgery. I nearly gasped when I saw Jacob's chest x-ray with these large cloudy masses near the bottom of each lung and then I realized that we were looking at his liver and his stomach. His physical exam went well. The phlebotomist drew blood on the first try. Amazing! Jacob usually ends up with about 5 bandages and bruising whenever he needs a blood test. So no news will definitely be good news in the next few days as the blood tests are run and the x-ray is examined. He will probably be scheduled for surgery at 7:30 am next Wednesday and it will last about 6 hours. I almost lost it when we were talking to an anesthesiologist about the procedure because it's really not as simple as knocking someone out and disconnecting their brains. As his neurosurgeon described him, however, Jacob is ROBUST. He will tolerate the procedure well. He is 33 pounds and 3 feet tall.

Sunday, December 12, 2010

10 Days

Jacob's pre-operative appointment is in Boston tomorrow from 1:00 - 3:30 pm. I have to prepare a list of his medications tonight and actually pack the bottles tomorrow morning to verify his dosages. When Jacob began taking Depakote, he developed an aversion to fruits and most vegetables. I posted before that a possible side effect of Depakote is food perversion because it may leave a metallic taste in the mouth. So as a result, Jacob has been constipated because he mostly eats dairy and carbohydrates. I have been giving him Miralax as needed and a multi-vitamin with iron daily. Jacob had some blood tests a few weeks ago and apparently his blood cells are large, indicating either an iron deficiency or a folic acid deficiency. Since he has been taking the multi-vitamin, his pediatrician determined that he would also need to take folic acid because this deficiency is also a possible side effect of Depakote. So basically, whenever Jacob is able to stop taking Depakote, he will also be able to stop taking the Miralax, the multi-vitamin, the folic acid. The other medications he is on are Flovent, to prevent an asthma attack, and Proventil, to treat an asthma attack. And actually, asthma isn't diagnosed in children Jacob's age because many children grow out of it so it is really called reactive airway disease at this stage. I'm looking forward already to a year from now when maybe Jacob won't be taking ANY medication AT ALL. Nothing will ever be as bad as prepping Jacob's thigh and administering an injection every morning but... Sometimes I have to do a little detective work and look for evidence of a wet syringe to know I already gave him that and rinsed it or look for stains on Jacob's shirt to see which one dribbled out of his mouth.

Thursday, December 9, 2010

13 Days

The background of the blog has always been colorful and child-like because this is the story of Jacob afterall. I changed the design in October to a dark and scary bridge. Trevy's Mommy often writes about the Miracle Nightmare and the Healing Side of hemispherectomy surgery. So I went literal. We are ready to cross and scared as shit. But 'tis the season and there are enough miracles to go around for everyone.

Tuesday, December 7, 2010

15 Days

Matthew has had a cold for about two weeks. Mommy has had a cold for about a week. Jacob has had a hint of a runny nose and has coughed about five times for a few days. Uh oh. The albuterol rescue inhaler is locked and loaded for the first sign of a crackle or a wheeze. Matt Sr. is healthy. I know that isolating Jacob for the past 4 weeks has limited his chance of infection and definitely allowed him to recover from the pneumonia. But I couldn't isolate Matthew as well and I can't resist kissing all over him... Hopefully I have the worst of it. I have been coughing into my sleeves and washing and sanitizing my hands before touching Jacob or his food. I am hopeful that if Jacob does get worse that he will have enough time to get better before the 22nd. And I know this will not become pneumonia again because he has it so mild right now and I am watching his nose and listening to and feeling his chest for any signs of breathing difficulty. And no fever. Fingers crossed... again.

Thursday, December 2, 2010

20 Days

The same thing happened to me in October. My heart, my stomach, my intestines, my mind - all in alignment, although my muscles were tight, my bones ached, and my migraine headaches were recurrent. Last week after I cancelled the rest of the specialist appointments that I had scheduled in the heat of pneumonia, I felt a calm come over me. And although my muscles have been tight and my bones ache and my migraine headaches are getting on my nerves, I have been feeling so positive and so hopeful. My stomach is churning and my intestines are squirming and my heart is racing. I am excited for Jacob to be free.

Wednesday, December 1, 2010

21 Days

The benefit for Jacob was held one year ago today. Wow. Sometimes it feels like just yesterday and other times it feels like a lifetime ago. Two rounds of Constraint Therapy later, Jacob is consistently using his right hand to assist his left. A year ago, he didn't even know he had a right hand. He took his first steps in February and said his first word in May. Now he is learning to step up and over, he is commando crawling, he is walking backwards, he is squatting... a year and a half ago he couldn't sit up on his own. A year ago, he scooted with one leg and one arm. He now uses sounds, words, gestures, or signs for mama, dada, milk, more, done, up, down, help, ball, please, thank you, excuse me, me, my turn, pen, paper, tractor, ice cream, phone, binky, baby, hot, hat, open, yes, no, train, purple, blue, green, pink... I know there are more.

The benefit truly was a gift of hope and opportunity.

Sunday, November 28, 2010

24 Days

I have been nesting again. Definitely not expecting although I think about it way more often than I should. My clutter is a way of reminding me that I haven't lost my mind because somehow in the deepest darkest trenches of my mind, I can remember where I put almost everything. I found Jacob's baby hair on a knick-knack shelf in the kitchen for example. Gross but I left it there because I know where it is until I have time to scrap book it away. I decided to tackle Matthew's room and closet. We are toy hoarders because you never know... but I finally threw out some toys that were never meant to be loved again. And I threw out the one-armed clothes that Grammy altered for Constraint Therapy. We saved both of the casts of course.

Friday, November 26, 2010

26 Days

This afternoon we decorated our synthetic Christmas tree. Just as we do at Nana's house each year, we tell the story of each ornament, who it belongs to, where it came from. There are some that were hand-made by my mother many moons ago that she laughs about because they were "cost-effective" at the time. But she held onto them and now so do I - a felt Christmas tree and one that looks like I don't know, a spiral broom? There are some that Nana held onto for her son for when he was grown and had children and a tree of his own. "Daddy when he was a little boy". Some are newer ornaments given as gifts to Matt and I or the boys. Some were made by Matthew. We LOVE our Christmas tree.

Monday, November 22, 2010

Oh Hello

Hysterical. Manic. Obsessive. Character traits that would be undesirable if not for Jacob.

With surgery in mind, I scheduled appointments with feeding, pulmonary, and immunology specialists. We made it to two of the three appointments before I realized that I am a specialist. I know Jacob.

I have been concerned about his diet because he refuses to eat fruit and most vegetables. When my mother was sick a few weeks ago, she emailed me about the side effects of some drugs including anti-convulsants that leave a metallic taste in the mouth. Sure enough, food perversion as it is called is a possible side effect of Depakote.

Jacob's lungs sound clear and a follow-up x-ray will be taken when we go for his pre-operative appointment. He has responded well to his treatment and has not needed his rescue inhaler since the week we were discharged from the hospital.

I am often at odds with myself because there are some fears that are real and others that are not. As much as my undesirable character traits create the fears that are unrealistic, they also help me to tease them apart.

Sunday, November 14, 2010

IQ

"Puh-poh" he said as he showed Mommy a crayon that was PURPLE! I don't know if it's because I've been home with him all day to notice or if he seemed to plateau because he's been sick for over a month, but Jacob has been making some real gains in the speech department. His ability to articulate sounds is very limited but he is making the most of what he can say and because he uses his words in context, we are able to figure most of them out. In the past I think he scored greater than two standard deviations below the norm for his cognitive abilities, which his EI Team attributed to the fact that he could not verbalize what he was thinking and could not show his intent without the use of both hands together.

I don't know if it's because of the inhaler medication or if he just realized that he's two-years-old, but Jacob is becoming a mischievous little boy - a true sign of intelligence to me.

Friday, November 12, 2010

Random Thoughts

When Jacob was transferred from the ICU to the "floor" at Hasbro Children's Hospital, we were in the room next door to where Jacob was admitted with Infantile Spasms about a year and a half earlier. Freaky.

Jacob labeled the moon in the sky this afternoon! We have a battery-operated "Moon in my Room" that Jacob loves to look at and he was able to transfer the idea of that moon to THE moon. We lost the remote control to the room moon so it is always a full moon. Tonight the moon actually is a crescent moon.

Jacob pushed Elmo in the stroller this morning using TWO hands. He increasingly uses his right hand to assist him while playing.

Jacob pretends that the hippo on the Sodor Zoo (Thomas the Train) Hippo Car bites him. He puts his finger in its mouth, pulls away quickly, and yelps.

I don't know if Jacob knows who he is yet because he identifies himself in pictures and in the mirror as "be-be" and he looks behind the mirror for the baby.

Sunday, November 7, 2010

Buh

Jacob began initiating the word help last week with the sound "buh" - his pronunciation for the ending of the word. He has also added "bah bah" (bye bye) and "bee" (please) to his words. For many words, he makes multiple sounds for multiple syllables like tractor which he said last week but only a few times so I forgot what it sounds like. He is more willing to take risks imitating what is said to him probably because we are more able to recognize what he is saying when he initiates a word. Speech must be frustrating if nobody knows what you're talking about. Why bother talking then?

Thursday, November 4, 2010

Breathe Easier

Jacob needed only two doses of albuterol today compared with four or five doses per day since we were discharged from Hasbro last week. Since albuterol is a stimulant, a welcomed side effect has been a wide-eyed, awakened Jacob. His anti-seizure medication, depakote, is a depressant and we've always been concerned that it dampens his personality and his cognitive abilities. This is one of the reasons for surgery - to get off the depakote. Jacob's second dose of albuterol today followed about fifteen minutes of him laughing and squealing and "running" and then he was coughing and breathing quick and shallow. The respiratory therapist at Hasbro said that laughing, as well as crying, causes us to take deep breaths, exactly what the lungs need to do in order to clear out the remains of a pneumonia infection. For the first few days after we were discharged, I held Jacob almost all of the time because walking brought on an asthma attack. For the last few days, I have been able to play with him for short periods of time the way little boys like to play.

The quarantine is in effect until December 22nd. I requested leave from my employer to be home with Jacob while he recovers from pneumonia. Since he is susceptible to recurrent pneumonia, he will not be able to attend daycare until after surgery. Jacob's daycare director has graciously offered to reimburse us for the weeks that he is at home. We are so grateful.

Wednesday, November 3, 2010

Quarantine

Already Jacob is doing much better than when he came home from the hospital the first time. I am keeping my fingers crossed that he will get through the next two weeks without incident. I am only allowing him to be with Matthew at this point and no other children. Jacob has to come with me to drop off and pick up Matthew at school but I don't let him get close to anyone and I wash and disinfect his hands if he touches anything. Phew. And I thought I was paranoid before... My father recommended that we get surgical masks for people who visit the house so be forewarned. My poor mother has been really sick and I think she may have caught it from Jacob when she came to see him in the hospital:( To put this in perspective, Jacob was on five medications for the past week - 2 antibiotics, 2 inhalers, 1 oral steroid. Now he is on 1 antibiotic and 2 inhalers. Plus his anti-seizure medication. He's also on Lucky Charms, grilled cheese, vanilla ice cream, tortilla chips, and milk. (We are going to have an evaluation with the Feeding Program at Hasbro because he refuses to eat fruits and vegetables and just about everything else.)

Tuesday, November 2, 2010

Saturday, October 30, 2010

Are You Kidding Me?

Jacob was admitted to Hasbro Children's Hospital on Thursday with... pneumonia. We will probably be discharged this afternoon or evening because he has been off oxygen and has been eating and drinking. We will begin a regimen at home of inhalers and antibiotics and I will be staying home to care for him. He cannot be exposed to his daycare environment because his lungs are susceptible to infection since battling the bacterial pneumonia a few weeks ago. Two hospitalizations within three weeks? I hope to never know what it is like to be a "frequent flier" because this is almost more than we can handle. Once again, if we didn't have our family to lean on we would be hit emotionally and financially. Hasbro is extremely family friendly. On our first day, a wagon came through with decorated pumpkins that were donated for the children at the hospital. It always makes me cry. You try to be so strong but can't help but be moved by the humanity of a simple gesture. The nursing staff is terrific and has welcomed my questions, willing to teach rather than tell me what is happening to our son. So we still have our eyes on December 22nd but have learned from our most recent experience to focus on treating him now and worrying about surgery later. It is what it is. There is no timeline for loving Jacob.

Saturday, October 23, 2010

Did I Mention?

Jacob is the happiest little boy in the world. I forget to mention this amidst all of my own misery. The Story of Jacob is told through my tired eyes and would be entirely different if it was told through his bright wide brown eyes. He only complains when he doesn't get his ice cream (a RARE occurrence) or when he has to sleep in his crib (he's been sleeping in our bed AGAIN) or when his diaper is being changed (the antibiotics he was taking caused diarrhea and a TERRIBLE diaper rash). I brought him to see his pediatrician on Monday, Wednesday, and Friday last week to check his lungs and his bottom. My miserable self is desperate for him to be HEALTHY. But he is happy.

Monday, October 18, 2010

Regret

At Jacob's 6-month well baby visit, I mentioned to his pediatrician as an afterthought that he didn't seem to be using his right hand. I thought that maybe it was because of how I placed the hanging toys in his activity gym. When she dangled her stethoscope over his right side, he made a weak attempt to bat at it so she felt that he was showing his "handedness" early and that if he continued to use only his left hand by the 9-month well baby visit, then there would be reason for concern. Within a few weeks, however, Jacob had his first Infantile Spasm and we learned why he was only using his left hand. Nothing would have changed had we known a few weeks earlier about Jacob's stroke. I'm so happy not to have known for so many months. But I said some really stupid things that I now regret. I remember my mother was over at our house and I was trying to engage Jacob with a rattle and he just kept looking away. I figured that Jacob might not be as intelligent as Matthew was at his age and said something about Jacob being a football player because of his gigantic size. I didn't realize that he was disengaged because of the electrical storm brewing in his head. And I didn't realize that he had a slight paralysis on the right side of his body.

Since then I have been vigilant. I'd rather drive myself crazy being proactive about Jacob's health than deal with the aftermath of a missed diagnosis. But this pneumonia caught me off guard. Like I posted before, he had just seen his pediatrician on September 30th. She was on vacation the following week so I brought Jacob to another pediatrician who had seen Jacob before on October 8th. Neither of them heard anything in his lungs. And then two days later, we end up in the hospital. I have a degree in microbiology and understand the rate of reproduction in bacteria but... by Sunday he had a moderate bacterial infection in his right lung and a mild ear infection in his left ear. The incidence of pneumonia in young children must be very low because it never crossed any of our minds. I thought that maybe he had contracted the flu from the 2010 Influenza Vaccine. And he may have although I will never be able to prove this. I need to have someone or something to blame... Jacob had a runny nose and a slight cough when he saw his pediatrician on the 30th. My father brought him for me but I had written a note about checking him for an ear infection and listening to his lungs for congestion because I knew that if he had an infection, it had to be treated right away if he was still going to be able to have surgery a few weeks later. I also asked whether he should receive his immunizations and vaccinations before surgery. My father said she spent a long time with him thoroughly checking him out and found no infection. Just a cold. She said that he should get all of his shots because then he would be protected while in the hospital following surgery. Jacob seemed to feel better over the weekend but then his nose started running again sometimes clear, sometimes yellow. He started to have diarrhea and his cough became more persistent. Finally, on Friday when I picked him up from daycare, his face was red hot and he had a fever of about 101. I took him that evening to the second pediatrician who again found no infection. Just a cold. And he prescribed an inhaler because he thought his cough sounded like a wheezing cough although he did not hear any wheezing in his lungs. I didn't want to give him the inhaler until I was able to speak with a nurse in the pre-operative department at Boston to be sure that he could have this medication prior to surgery. But by Sunday I had a nervous breakdown because Jacob's "cold" was getting worse. We decided to give him the inhaler because he was in no shape for surgery anyways. He hadn't really eaten since Friday afternoon and was coughing up any fluids that he drank. I wished that I had given him the inhaler right away. It may have relieved some of the coughing. It also may have masked the pneumonia. I don't really know but I do regret that I was so focused on the surgery. So back to the vaccine. Jacob received the live intranasal vaccine. It is not supposed to be given to children under two-years of age or children with a history of wheezing. I believe that Jacob may have contracted the flu virus from this which primed his lungs for the pneumococcus bacterium. This type of pneumonia is a complication of the flu.

Although I may sound bitter because I am, the moral of my story really is that neither doctors or mommies are always right although everyone is operating with the best intentions. Vigilance. Education. Advocacy. I have come to understand how important it is for me to be a part of Jacob's medical treatment rather than a bystander. My mantra while he was in the hospital was NO REGRETS. We had them swab Jacob for MRSA, we had them do a second X-ray, we had them draw blood a second time to check his white blood cell count, we had them draw blood a third time to check his anti-seizure medication level. There is a fine line between careful and crazy but it is a line that needs to be crossed.

Sunday, October 17, 2010

Good Better

Jacob's breathing sounds better today. I didn't have to give him a nebulizer treatment during the night so I hope the trend continues. He goes in for a follow-up appointment tomorrow morning to be sure that the pneumonia is clearing from his lungs. He's still tired and a little unsteady on his feet so he'll be home with me for a few more days before he goes back to school. We're going to Chuck E. Cheese today to have a faux birthday party for Matthew because he keeps asking when we're going to have Jacob's party. Jacob enjoyed his presents in the hospital and his cards at home so I don't think it really matters to him. I'm in the mood for low key. Just taking it easy until December. I go back to work on Wednesday. Surprise for my students who thought I would be out until November! Now I'll have a few months to plan for my next absence. Everything is as it should be. It's always hard to see a way out of the storm but with so many points of light in our family and friends, we find a safe place even when we're afraid.

Friday, October 15, 2010

Home at Last

Jacob came home from the hospital yesterday afternoon. He's on antibiotics and nebulizer treatments for the next ten days. We may have uncovered an underlying medical condition with this hospitalization. Jacob tends to become asthmatic every time he develops a respiratory infection, whether it's pneumonia or the common cold. I remember he had the cold (a cough) for three weeks once. This time he was coughing for about two weeks but he had been sick for almost three. We had taken him to see a pediatrician twice and even up until the Friday before his hospitalization, he was thought to have the cold virus. Anyways, when the lungs respond to infection, they secrete more mucous. Usually we are able to cough up the mucous and clear the infection. In Jacob's case, his lungs also respond by "tightening up" and he is unable to effectively clear the mucous so he continues to cough for weeks. With a bacterial infection, this just allows the bacteria to make a home in his lungs because it is moist, and warm, and dark. It's possible that Jacob's right sided weakness may also play a role in his inability to cough effectively - maybe a muscle weakness. So since everything happens as it should I have no problem with postponing the surgery, which by the way is scheduled for December 22nd to allow enough distance from the pneumonia and antibiotics. In the meantime, we will be making appointments with the pulmonary and immunology programs in Boston to get a handle on Jacob's condition prior to surgery. In just one year he has had 6 ear infections (some double), strep throat, and now pneumonia. He has never gotten well on his own because every cold turns into something else so he has always ended up being treated with antibiotics. Hopefully these appointments will give us some answers...

Sunday, October 10, 2010



The cold turned out to be pneumonia and Jacob was admitted to Newport Hospital for his birthday. My sister Allison had bought him an IV pole cover and a blanket for his surgery in Boston, which will be postponed. I don't know about Jacob but these gifts gave me some comfort today. Matthew was very upset that we didn't get to have a party for Jacob so we bought a cake on our way home and sang Happy Birthday. Matt is staying overnight with Jacob.

Saturday, October 9, 2010

Upper Respiratory Infection

The cold is one evil *#*!@. For Jacob's birthday tomorrow I am wishing for his nose to stop running and his cough to clear up. With surgery scheduled for Wednesday, they may postpone if he's sick. The next available date is November 24th!

Wednesday, October 6, 2010

The Story of Jacob

Matt and I were out to lunch when we had a discussion about when we would be ready to have another baby. We figured we would wait until August so that I would be able to go out on maternity leave at the end of the school year and then be home with the baby all summer. And then a few weeks later I was pregnant with Jacob in JANUARY? I was scared to tell Matt but we were both excited once we realized that I was really pregnant. I quit smoking for the second time and looked forward to being humongous, and I was. Everything has happened just the way it should. Jacob could have had a stroke earlier in the pregnancy and would have been born deformed or worse - he may not have been born at all. We could have missed the first spasm if we had put Jacob down while giving Matthew a bath, but we didn't. We could have dismissed the spasms if my father had not been taking care of Jacob and my stepmother hadn't insisted that we call his pediatrician. If there hadn't been another case of Infantile Spasms in her office a few weeks earlier, Jacob's pediatrician might not have immediately referred us to a neurologist. Jacob's neurologist didn't think that he would respond to the ACTH treatment, but he did. I insisted that Jacob was continuing to have seizures and even though a 72-hour EEG showed no seizure activity, Jacob's neurologist put him on phenobarbitol and the seizures stopped for a short time. I kept insisting that he was having seizures again and after a 6-hour EEG, it was confirmed. Jacob's medication changed to Depakote and after adjusting his dose three times, we asked for a neurosurgical consult. If Jacob's brain had not been so malformed, he would never have been considered for surgery. Jacob's neurologist had said back in the beginning that we might have to consider surgery down the road because the malformed brain tissue was not doing anything good for him. This sat in my mind for all of these months. I knew it was inevitable. Every thought and every action has been about planning for the future while staying grounded in the present. The present is just as it should be. Jacob doesn't know. He uses the sound "be-be" for baby and binky and beep beep and as long as we are in his context he is communicating with us. He waves good-bye and blows kisses to dada in the morning and and asks for "ay" every afternoon (ice cream). As his neurologist said, he has progressed in spite of his brain malformation. I can't even imagine what his life will be like once the naughty brain tissue is behind us. One week to go. I am sure about the surgery but stay up all night thinking about it. I know some of my anxiety is about the risks but I think most of it is about taking care of Jacob after surgery. I feel like I have been able to make things happen for him in terms of therapy and daycare and life in general but the healing process is something that his little body will have to do on its own. I have no control over this. There is no one I can call to raise hell with, no emails to send, no calendar to refer to. No plan. So I have to believe that everything will happen as it should.

Wednesday, September 29, 2010

Simmer Down

I believe that I am more melancholy about Jacob's 2nd birthday than his impending surgery. Sometimes I fast-forward to age 5 and imagine him running and jumping and learning in school. But at the same time I want him to be a perpetual baby. As he gets older, his disabilities become more apparent - more disabling. I have no idea what 5 will look like. I'm afraid to see it because what if it is not what I have imagined? As long as he is a baby he has no need for words and "Mommy-do" everything. Don't misunderstand. I have never been afraid to let him try to do for himself. I have never been afraid to see him struggle because I always imagine success at the end. I am full of hope. I guess it's the waiting that troubles me. Are we there yet? Will we be there at 5 or will it be 10? You know that I will wait. What else can I do?

Thursday, September 23, 2010

Nap Time

Matthew's new schedule at school is to skip the nap time in order to play with the children who do not have to take naps and then fall asleep on the way home from picking Jacob up. So it gives me more time to spend one-on-one with Jacob now that I am back at school myself. We eat, we play, we laugh. It reminds me of what life was like when Matthew was a baby. It's so hard to share Mommy in the afternoon. I feel like our "playtime" together is me keeping the two of them from killing themselves or eachother. So when Matthew wakes up from his evening nap, he'll have Mommy to himself. We'll see how long I can stay awake. A colleague reminded me that a special needs child is a full time job in and of itself just with all of the phone calls and appointments. We're working on scheduling a speech evaluation pre- and post- op to see what outpatient speech services Jacob will need following surgery. I have to call insurance and call his pediatrician and call Hasbro. We already have a relationship with Hasbro because of the Constraint Therapy so they are ready to bring him in following surgery to evaluate him for PT/OT services. I hope that his left brain is doing nothing but having seizures so that he won't seem any different after surgery. I hope. Jacob will be 2 on October 10th. It's hard to believe that he is only going to be 2. It feels like we have lived this life for a long time. I need a nap.

Sunday, September 19, 2010

More Midnight Crazies

So I'm up all night reading... again. I found this article that reminds me of Jacob - right hemiparesis, left middle cerebral artery infarction (stroke), infantile spasms, absence of clinical seizures (normal appearance), epileptiform activity (abnormal EEG).



Anyways, Jacob is a special case but I found the article to be interesting because I am very concerned about Jacob's expressive language.

Saturday, September 18, 2010

What Would I Do...

What would I do without you? I rest easier, breathe deeper, allow myself to laugh and to cry whenever I please, find peace and comfort, and a little bit of freedom. Thank you mom and dad and christe and shirley and betsy and zinovia and allison and nana and papa.

Wednesday, September 15, 2010

The Unknown

Our appointment with the neurosurgeon was brief. We asked our questions and he answered them. We didn't learn anything new really, except that the surgery would take 5-6 hours and that we could give blood to the blood bank in the event that Jacob needs a transfusion. He probably will not need to wear a helmet. He probably will need visiting nurses to check his wound. He may need skilled nursing services or a home health aide. He may need inpatient rehab or he may need outpatient rehab. There was a fatality in 1990 but now the procedure is done differently to reduce the risk of blood loss. He will regain his speech and motor skills. He will stay on his medication before, during, and after the surgery until his neurologist decides we can try to take him off. Jacob's motor abilities are coming from a deeper brain structure that will not be removed or from the right hemisphere. He has no motor tissue in the left hemisphere. I think his neurologist was being generous when he said Jacob still had a third of the left hemisphere. Jacob will have a drain in his head until we leave the hospital to keep the fluid pressure off of his brain. They will remove some tissue to allow room for the brain to swell. This is the biggest procedure they do in the neurosurgical department.

Tuesday, September 14, 2010

Boston

I have requested leave from work and we will go to see the neurosurgeon today to discuss the surgery. Jacob's post-operative appointment is on November 9th. According to the neurosurgeon's administrative assistant, most children recover after 4 weeks. Sounds crazy to me but wouldn't that be amazing. It's still hard to believe that parents, including us, would willingly remove or disconnect half of their child's brain. Then again, we willingly put a cast on Jacob's left arm and hand twice, effectively disabling him for a month. Poor parenting? Hell no. We are changing the course of his life. What he is able to do has everything to do with who he will become. Independent living ultimately is my goal for him. But for now I want to hear him combine words and use sentences. I want him to be alert and free of medication. He's still going down around 6:30 pm and sleeping for 11 or 12 hours in addition to napping during the day. This cannot be normal.

Sunday, September 12, 2010

Nearly one month until surgery. Unreal.

Wednesday, September 8, 2010

O.M.G.

Jacob started school on August 30th, Mommy on September 1st, and Matthew on September 7th. So little time to update the blog between lesson planning, making lunches, and getting everybody out of the house alive and dressed and on time. No news is good news though. As expected, Jacob predominantly uses his left hand but will use his right as an assist. The week after constraint ended, I brought Jacob and Matthew to the park and helped Jacob crawl up the stairs to the slide. When we reached the platform, I watched him wrap both hands around the bars to pull himself up. He can do it when he believes it is a necessity. Otherwise, he finds alternate ways of doing things. And as I wrote before, the most difficult part is to maintain the skills especially when I am back at work and see him for only short periods of time other than the weekends. He's been very tired at school so I've gradually been putting him to bed earlier. Tonight he went down at 6:30 and we'll see if he sleeps through the night. He's been waking up at 5:30 and falls asleep in the car before school. He has to wait until 12:30 to take a nap. But overall, he is doing well at school. We meet with the neurosurgeon next Tuesday to learn the specifics of the surgery and his recovery.

Monday, August 30, 2010

Reassurance

I wanted to share the following emails between me and Jacob's neurologist...


Good morning Dr. B. I don't know if you have had any correspondence with
Boston, but we did get a call that they will move forward with his surgery. We
are supposed to get another call this week to schedule a date. If you can
believe it, I am more anxious than ever before. I'm having a hard time letting
go of his brains because my understanding of the brain is so limited. So I have
a few last questions for you and if you prefer, I'll schedule an appointment to
discuss... again. I'm also going to meet with Dr. M again to talk about
the particulars of the surgery and recovery process.

Given the extent of damage to Jacob's left hemisphere, how do you explain his
progress?

We think that he is normal even better than normal in terms of his social,
emotional, cognitive, and receptive communication skills. We only see deficits
in his motor and expressive communication skills but he is improving in these
areas. Would disconnecting the left hemisphere stop his progress in these
areas? I read his EEG reports and recall our office visits and have the
impression that most of his seizure activity was coming from the front and the
back. Does the middle strip of tissue remaining contain motor and speech
functions? Can the right hemisphere assume expressive communication functions
including written language? Would he plateau at some point anyways even if we
left that tissue to function? During Constraint Therapy this time, Jacob has
been able to move his index finger independently although very slightly. How is
this possible?



Lots of questions...

His progress is reassuring. You need to remember that it is occurring in spite
of his brain malformation.

Freedom from seizures will only accelerate the developmental gains you have
seen.

The malfunctioning brain tissue is not contributing one bit to his development.

children who have entire hemispheres removed are capable of considerable
positive development, due to the normally functioning other half. that includes
the non-dominant hemisphere assuming functions normally delegated to the
dominant half.

remember that the front and back portions of the seizing hemisphere are the only
portions "visible" to the EEG. there is no brain tissue in the middle.

I understand your anxiety. I would never have suggested moving forward with this
had i though for a moment it would not help or worse, would hurt.

He is in good hands.

Saturday, August 28, 2010

The End is Just the Beginning

Constraint Therapy II has ended. For 21 days, Miss Casey was a regular for breakfast and lunch. She pushed Jacob, challenged him, worked his muscles and his mind. He learned to say "eee" for eat, "sch" for chip, "hah" for hot, "tsh" for shhh, and "bpe bpe" for pee-pee during the last month. He learned how to get up on his knees and get down on all fours. He also learned how to get out of his cast... twice. Once the cast was off, he reverted to using his left hand. At his daycare's Open House yesterday, I watched him carry around a plastic cell phone in his left hand and as he walked by the toy kitchen, he slammed the microwave door closed with his right. He walked by the Elmo restaurant at home last night and slammed the refrigerator door shut with his right. Just as we noticed from the first round of constraint, the skills are never lost. They are retained but they are difficult to maintain. The brain knows and when he calls upon the skills that have been learned, they will be there for him. He has not yet learned to play with both hands together because he has never needed to. He adapts. He'll use his feet or his mouth. But as he grows and develops and desires to play with more challenging toys, his muscles will remember. I believe this. So my feelings are bittersweet right now. So happy constraint is over but so sad that Jacob's whirlwind of progress will not always be so apparent. So sad not to see Miss Casey on Monday morning... but it will be Jacob's first day of school.

Friday, August 27, 2010

Day 26

I forgot to bring the video camera...

Thursday, August 26, 2010

Tuesday, August 24, 2010

Faith

I always wish for Jacob to be healed. But I never pray. I don't know how to pray. He must be listening anyways.

Day 23



Monday, August 23, 2010

It's Time

Appointment with neurosurgeon on September 14th.

Pre-op appointment on October 12th.

Neurosurgery on October 13th.

Sunday, August 22, 2010

Day 21

Jacob made several attempts to crawl today!

Day 20

Friday, August 20, 2010

Neurosurgery

Jacob has been approved for neurosurgery at Children's Hospital Boston.

Day 19

The pediatric model of Constraint Therapy was developed in 2007. Jacob first had the therapy when he was 16 months old. He is now 22 months old. He likely is the first child with his particular diagnoses to have participated twice before the age of 2. In the following clips, whipped cream is used as motivation for Jacob to extend his right pointer finger. We have been told that Jacob will never have independent use of his right fingers because of the extent of the damage to the left hemisphere of his brain...





Thursday, August 19, 2010

Wednesday, August 18, 2010

Day 17

Jacob is a paradox. He is perfect. He is damaged.

Tuesday, August 17, 2010

Day 16

We are pooped.

We need to find someone to assist Jacob at daycare during playground time in order for him to participate safely. He has scraped his skin and has bruised his face when he has fallen in my presence and my ratio is only 1:2. He needs 1:1. He can do everything with assistance - run, jump, climb, slide, swing. Without assistance, he cannot do any of these things. So if you know of anyone...

Monday, August 16, 2010

Sunday, August 15, 2010

The Washington County Fair




Day 14

Washington County Fair today!

Jacob's art smocks for daycare...

Saturday, August 14, 2010

Day 13

I swear I saw Jacob moving his right pointer finger towards the ketchup on his plate. He loves ketchup.

Friday, August 13, 2010

Wednesday, August 11, 2010

Day 10

Jacob wore his AFO (ankle-foot-orthotic) for an hour today. I will post pictures tomorrow.

Tuesday, August 10, 2010

Monday, August 9, 2010

Day 8

"P" "h" "D"

I was studying discourse analysis in a doctoral program. I have been on a leave of absence and will probably have to withdraw from the program. No regrets. I am learning so much about language through Matthew and especially Jacob.

I wonder how the neurological pathways developed through Constraint Therapy affect the development of speech and language. During his first week of therapy, Jacob has been vocalizing more than ever before. He attempts to imitate consonant sounds like "s" and "p" and "h". He is telling us stories without words but uses his mouth and his voice. He responds to words with actions - for "pee-pee" he walks to the bathroom and gestures towards the toilet and for "Naughty Chair" he laughs at us and looks to find the Thomas the Train chair.

The right hemisphere of Jacob's brain is assuming the speech and language functions of the left because the tissue simply does not exist. I am hoping that the right hemisphere is also assuming the motor functions of the left that we are seeing through Constraint Therapy.

Sunday, August 8, 2010

Day 7 - Freedom

Jacob managed to wiggle out of his cast today. He has taken to hitting Matthew and everyone else with it. Matt and I were able to put it back on after giving him a bath of course.

Saturday, August 7, 2010

Sleepy, Sleepy

After three and a half hours of therapy, 6:30 am - 10:00 am, Jacob falls asleep in the glider while Casey stretches his arm and hand. He naps for two hours and resumes therapy from 12:00 pm - 2:30 pm.

Friday, August 6, 2010

Thursday, August 5, 2010

Wednesday, August 4, 2010

Tuesday, August 3, 2010

Monday, August 2, 2010

Day 1

I have a feeling that Jacob is going to ROCK the clown in the Constraint
Therapy II post-evaluation. Watch Day 26 before watching the following clips...

Sunday, August 1, 2010

Sharing a Moment

I read this post in May after bringing Jacob home from the hospital. I wasn't able to get past the second line at the time because I was a different mother then. Tomorrow Jacob will begin Constraint Therapy II and I am nervous and excited and know that he is a wonder.


Mothers Lie
By Lori Borgman





Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.





Mothers lie.






Every mother wants so much more.She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.






She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.






She wants a baby that will roll over, sit up and take those first steps right on schedule.






Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.







She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.






Call it greed if you want, but a mother wants what a mother wants.








Some mothers get babies with something more.







Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.








The doctor's words took your breath away.







It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.








Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.








It didn't seem possible.









That didn't run in your family.







Could this really be happening in your lifetime?








There's no such thing as a perfect body.








Everybody will bear something at some time or another.








Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.









Mothers of children with disabilities live the limitations with them.









Frankly, I don't know how you do it.








Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.








I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.









I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.







You snap, you bark, you bite.








You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.








You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.








From where I sit, you're way ahead of the pack. You've developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.








You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law.








You're a wonder.

Thursday, July 29, 2010

Cousins - Take Two



















The Monkey in the Middle is cousin Cole Miller from San
Diego, California with Matthew, Jacob, and Auntie Allie.
(April, 2010)


These boys grow like weeds... (July, 2010)

Cousins



















Jacob, Matthew, Benjamin, and Sebastian Borgueta

Wednesday, July 28, 2010

Maybe

I have been stressed about time. When will Jacob's case be presented at Children's Hospital Boston? When will he be scheduled for surgery? How long will his recovery and rehabilitation take? How old will he be when this actually happens? And then I was thinking that maybe this is all for the best because the neurosurgeon discussed the honeymoon period where a drug seems to work and then gradually becomes ineffective. Jacob has done well since he was switched to Depakote a few months ago. But it took several increases in his dosage and now he is taking 7 ml twice a day. The maximum for his weight is 8 ml twice a day so we still have some room to adjust if necessary.... I have been seeing some strange eye movements again. Some rolling, some shifting. I am feeling like I've been here before because I have. And the last time it took over a month before we confirmed that he was having seizures again which led to the recommendation for neurosurgery. This surgery is not common. It is a life changing decision. So maybe we are meant to wait to see Jacob's seizures again to reaffirm that he needs this surgery so that we have no regrets or second thoughts. So we know we have done what is best for Jacob. So we wait together and I will not post about this again until it is time.

Monday, July 26, 2010

Short

Constraint Therapy II begins in 1 week!

Boston. TBA. Three children are presented each Tuesday and emergency cases take precedence.

Friday, July 23, 2010

Poopy-Face





























Matthew was nearly 22 months old when Jacob was born.


Jacob is nearly 22 months old now.


Jacob doesn't know but Matthew does.


Matthew is fiercely independent. I wonder why.

Toe Jam Puppet Band




Sunday, July 18, 2010

Midnight Crazy

Unravel at night. Knit myself back together in the morning. What will become of Jacob? What will become of Matthew? Fill the blog with images of beautiful children - happy and playful - to read about my own life, to feel a sense of peace, to remain hopeful. Pure joy. Pure agony. Anxiety about seizure-y behavior and neurosurgery, anxiety about the Early Intervention Model, anxiety about rehabilitation, anxiety about the "other" child who used to be the only child...

Why does he have to struggle? Why do I have to fight? Every day, all of the time? How does he love us all so much?

He doesn't know.

Be-Be

4-H Fair




Saturday, July 17, 2010

Read All About It

Children's Hospital Boston is ranked #1 for neurology and neurosurgery by U.S. News and World Report.

Please present Jacob's case this Tuesday...

Wednesday, July 14, 2010

Free-Write

I think about how I often go backwards and forwards in my mind from the beginning to the end and then back to the beginning. It's not so much about dwelling on the past - not at all. It's more about being able to recognize how far we've come. I feel like Jacob is stronger every day and I am soooo thankful that he understands EVERYTHING. Just him being able to follow simple directions makes therapy and daily living that much easier. When I am trying to get him to repeat consonant sounds I can ask him to look at mommy and he does. I can ask him to find his shoes or the milk. He kisses us ALL of the time and calls me Mama about a hundred times a day and just when I think I don't want to hear Mama one more time I remember that just a few months ago he didn't call me anything.

Tuesday, July 13, 2010

Big Beautiful Boys

Last Summer...



This Summer...

Friday, July 9, 2010

The Itsy Bitsy Spider

Jacob will be scheduled to be presented at the Epilepsy Surgery "conference" either the 20th or the 27th. We will be called about the consensus of the team afterwards.

Today was Jacob's second half-day of daycare. He was very interested in the other children and enjoyed circle time. His occupational therapist attended for an hour and said that Jacob was pleasantly surprised to find that they knew the same songs as him! His teacher said that he tries so hard and he blew her kisses as we were leaving. He did however fall with four adults in the room. I have been working on Jacob's eligibility to have a "one-on-one" with him to be his eyes and anticipate risks for falling such as books or toys on the floor or legs of tables and chairs. I also want him to have full reign of the playground which is particularly dangerous for him if he is not closely monitored - more so than what would be expected of his teachers. Even so, I am very happy with his experience so far. And I never did cry.

In the meantime, Matthew and I spent nearly three hours at the beach running and jumping in the waves, visiting the Save the Bay Exploration Center, going down the water slide, and enjoying a Del's Lemonade on the playground.

And now... two boys are sound asleep. Happy Friday!

Wednesday, July 7, 2010

Melting Away

Jacob has not been scheduled to be presented for epilepsy surgery at Children's Hospital Boston... Irritated. Annoyed. Disappointed.

Jacob is saying Mama all the time and is attempting to imitate other sounds after watching my mouth. He said "bebe" (baby) and "maah" (Matt) over the long weekend. He is also saying "bah" (bye) when prompted.

Matthew said "I thought about it but I didn't do it" after I asked him not to play with his fire engine in the hallway while Jacob was sleeping. He's 3 and a half years old!

Monday, July 5, 2010

At the Beach

Jacob went to the beach on Saturday for the first time since last year when he was only nine months old. He stomped in the wet sand and walked in the water and then turned to "run" from the waves.


Jacob and Grandma Christe at Easton's Beach.

Friday, July 2, 2010

Daycare

Jacob did well today and fell asleep on the way home.

Thursday, July 1, 2010

Jacob B.

Sunscreen. Check. Diapers and Wipes. Check. Toy Story Lunch Box. Ready. Crackers, Baked Beans, Noodles, Cookies, Juice Boxes, and Cheese. Ice Cream? And with a Sharpie marker I label his sundries "Jacob B." Tomorrow is Jacob's first half-day of daycare to prepare him for the fall when he will go five full-days a week. We have had the luxury of placing Jacob with our parents because they offered and he needed to be. However, Jacob will be two-years-old in the fall and needs the opportunity to use his social emotional skills as a developmental tool. But... tomorrow is Jacob's first half-day and although I will be spending quality time with Matthew, I will imagine Jacob at my side. I will not cry. Jacob is irresistible and will be well cared for but please Jacob... be safe tomorrow.

Tuesday, June 29, 2010

Waiting

At our appointment last Tuesday, Jacob's epileptologist asked for his EEG records on disc to be FedExed to him so he could present at their neuro department conference today. When I called on Friday, the records had not yet been received so I drove for hours to pick up the records myself at Hasbro and in Seekonk and then overnight mailed them through the post office. The records were received yesterday so I have no idea if there was enough time to review them in order to present today... Of course I'm going to call this afternoon but I don't want to hear that we have to wait until next Tuesday because then we still have to wait for the scheduling process to begin. Life is on hold until we have a date. My 0-3 years old clock is ticking.

Update: No news. Maybe next week...

Thursday, June 24, 2010

Hasbro

We found another image of Jacob on Hasbro's website, as part of a slideshow.


And... I borrowed it from the website.

Wednesday, June 23, 2010

About That Stroke

The epileptologist also said that Jacob's stroke must have occurred very late in the pregnancy if not at birth because of the symmetry of his body. If the stroke had occurred earlier in the pregnancy, then the right side of his face and his right leg and foot would have developed abnormally. Also, while Jacob delivered quickly, the process was more difficult than with Matthew. If the stroke occurred prior to birth, Jacob may have had trouble pushing himself out during the delivery. What is upsetting to me is that I went to the hospital two days in a row the week before Jacob was born because I thought my "bag-o-waters" broke... twice. I was still teaching at the time and called my father to pick me up from school. I was a bit frantic. The "waters" were tested... no amniotic fluid... twice. I was also hooked up to a fetal monitor and I was given apple juice to stimulate Jacob. I may have to order my own medical records to understand what happened to Jacob. I know it doesn't really matter but I do need closure.

Finally, after reading my own post from yesterday, I thought it was weird that I used the word "cheer" in the same paragraph as neurosurgery and developmental delay. Jacob will lose the potential for fine motor control of his right fingers. I was playing with those fingers this afternoon then sobbing for those fingers. But he has so much to gain - the potential to be seizure-free and medication-free and therefore to develop to his fullest potential cognitively. It is all about perspective.

Tuesday, June 22, 2010

Here's to Jacob

Jacob's epileptologist also agrees that he should have neurosurgery. He said that the left and right hemispheres compete for dominance and that the electrical activity in the left is interfering with the right's ability to take over the functions of the left hemisphere. He said he should have the surgery as soon as possible. The neurology/neurosurgery departments at Children's Hospital Boston will meet next Tuesday to discuss Jacob and to make a formal recommendation. Jacob also had his gross motor skills evaluation and although he is delayed, his scores have improved since last year. Finally, we received the results from Jacob's Constraint Therapy and he went from a percentage score of 2% to 26% for use of his right hand! I feel like I'm writing one of those Christmas newsletters except this one is about Jacob's brains. Nonetheless, it's full of cheer.

Monday, June 21, 2010

Numbers

Jacob's one year evaluation results... receptive communication and social emotional no delay, expressive communication delay, adaptive skills delay, fine motor delay, cognitive delay, and gross motor not yet evaluated but delay. Since last year, Jacob has improved in his adaptive skills and his receptive and expressive communication. Tomorrow is our big day in Boston. We'll keep you posted...

Thursday, June 17, 2010

Progress

During OT and PT Jacob has been working on transitioning from one position to another. For about a week he has been responding when I ask him "how do you get down" from our bed or the couch by rolling to his belly and moving backwards until he slides off the edge. This is very exciting because before he would just scoot forward and attempt to fall off. We are also working on Jacob transitioning from sitting to standing by getting to his knees, bringing one foot up to push off on, and then pulling up with me holding his hands. This is much more difficult for him and he needs a lot of support but he understands what he has to do and with practice he will be able to do this as well. For about a month, Jacob has been able to hold on to a railing with his left hand, lift his left leg up to push off on, pull up with me holding his right hand, and lift his right leg up to climb up stairs, again with a lot of support but he understands how to do this.

It is a testament to his self-determination that he is able to learn these gross motor skills in such painfully small increments, and once learned, to will his body to perform these tasks. This extraordinary child just wants to be an ordinary little boy.

AFO

Jacob's orthopaedist prescribed a right articulating AFO, a brace to help him keep his right leg and foot forward rather than turn out when he is walking. The structure of Jacob's hips is normal. Our next big appointment is on Tuesday when we see the epileptologist in Boston. He will help determine if Jacob should have neurosurgery. While the neurosurgeon looks at Jacob's MRI scan and EEGs, the epileptologist will also be looking at Jacob's developmental progress through Early Intervention.

P.S. My Father's Day t-shirts came in... this one is inspired by Jacob of course!

Disclaimer: I didn't design the t-shirt myself, I just ordered it because it looks like Jacob. Sorry Nana Ripa, I'm not THAT amazing!

Monday, June 14, 2010

IFSP

This afternoon Jacob will have his annual evaluation for his IFSP (his service plan). I am keeping my fingers crossed because last year his scores were so low except for social and emotional skills. The truth is I am hoping that his cognitive scores have improved. We all know that he is an intelligent being but I guess I want to see it in writing.

Saturday, June 12, 2010

The Week in Review

On Monday afternoon, Jacob had OT and Speech. In the evening, we were honored to receive the proceeds from the Oil Heat Institute of Rhode Island's Annual Charity Golf Tournament. Thank you Julie, Roberta, and Dennis for a special night.

On Tuesday morning, Jacob had PT and walked up Grandpa's street in his gait trainer.

On Wednesday afternoon, we saw Jacob's pediatric ophthalmologist who again suspected right hemianopsia but could not do a formal visual field test because he is still too young.

On Thursday morning, Daddy took Jacob to attend his first session of Aquatic Therapy at Hasbro Children's Rehabilitation Center. He loved it and worked very hard. The therapists thought he was adorable.

On Friday morning, Jacob had OT. In the afternoon, Grandma and Grandpa brought Matthew and Jacob to gymnastics at the YMCA. Mommy went home to do a load of laundry and dishes and to stuff her face and watch tv.

Tuesday, June 8, 2010

Saturday, June 5, 2010

Tuesday, June 1, 2010

A Few of My Favorite Things

The fuzzy hair at the back of his head and the pile of curls on top, the gap between his front teeth, the lopsided gait, the sign for milk, and the sound of "aei" (airplane).

Post a comment and add your own...

Friday, May 28, 2010

The Dentist

Matthew had his first dentist appointment yesterday and I nearly had a nervous breakdown because the hygienist "scolded" me about brushing Matthew's teeth. When Matthew turned 2 years old, Jacob was only 2 months old. My Nana bought him a motorized fire engine toothbrush for his birthday because we were having trouble brushing his teeth. We thought he would be inspired. When we watched the Goodnight Show on PBS Sprout we would sing the brusha-brusha-brusha-brusha-brush song with Star but we were still having trouble brushing his teeth. When Matthew brushed his own teeth, he would scrub the front, suck the water from the toothbrush, eat the toothpaste, and gargle and choke on his cup of water. Once Jacob was sick... we definitely neglected Matthew's teeth which is why I finally made the appointment. No cavities and no plaque. Just some tartar. We brushed last night and this morning with some resistance... The Binky Fairy is next!

Wednesday, May 26, 2010

Take these broken wings and learn to fly...

As I follow other blogs to understand pediatric stroke and epilepsy surgery, I am reassured about our decision to pursue surgical intervention. Jacob's left hemisphere is junk. Yes, I said it. The condition of his left hemisphere makes him an ideal surgical candidate. Jacob will need to see a pediatric opthamologist to confirm a suspected diagnosis of hemianopsia or split vision. Each hemisphere of the brain controls one half of each eye. Without a functional left hemisphere, the right half of each eye is blind. Jacob will also need to be evaluated by an epileptologist. Finally, his case will be presented to the neurosurgical team and pending approval, surgery will be scheduled.