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.