Now, How Awesome Is That???

I'm the mommy of a covergirl!!

Promises

I spent many years in Diaspora before coming home to the Church. In those years adrift, a single phrase from Mass remained in my head (and in my heart), and ultimately led me home.

"Lord, I am not worthy to receive you, but only say the word and I shall be healed."

It was that promise of healing that drew me back. Even alone in the wilderness, I knew that He had that power.

For a long time, I focused on the not worthy part. I understood that I was imperfect, and as such not able to fully be with Him. I wept in sorrow and repentence. But recently, it's the promise of healing that draws me. It's that promise that fills me with hope, not only for myself, but for my small, hurting family.

God may not heal my child, but He can help heal my heart.

Glory be to God.

Promises

I spent many years in Diaspora before coming home to the Church. In those years adrift, a single phrase from Mass remained in my head (and in my heart), and ultimately led me home.

"Lord, I am not worthy to receive you, but only say the word and I shall be healed."

It was that promise of healing that drew me back. Even alone in the wilderness, I knew that He had that power.

For a long time, I focused on the not worthy part. I understood that I was imperfect, and as such not able to fully be with Him. I wept in sorrow and repentence. But recently, it's the promise of healing that draws me. It's that promise that fills me with hope, not only for myself, but for my small, hurting family.

God may not heal my child, but He can help heal my heart.

Glory be to God.

Oh! That Smile!!

Now, could she be smiling any bigger? Maybe only if the swing was higher...

Her sister's smile pretty cute too.... :)

History

Browsing some old files, and I came across a letter I had written several years ago to get some funding for Abby. Anyway, I thought I would share an excerpt as it deals with the early history of her IS. The date on the letter was June 2007, which puts us about 7 months after the initial diagnosis, and two months prior to relapse. It's also a full year before our diagnosis of Autism.

(sorry for all the messed up fonts. they were being uncooperative, and i'm too tired to spend any more time fighting with it)

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Abigail was delivered by uninduced vaginal birth at 38+ weeks on May 7, 2006 at the the local hospital. There were no complications arising from her birth. We were discharged from the hospital on May 9, 2006.

On May 14, 2006, Abigail suffered from a seizure. We only realized that it was a seizure until after it had passed. It has never been determined whether or not that seizure is related to the seizures she subsequently suffered, or if it was febrile in nature. When we attended a well-baby checkup the following day, no action was taken other than to observe whether or not she ever has another seizure.

Abigail developed normally until December 12, 2006, when she had another seizure. She lost consciousness after the seizure, and I rushed her to the ER. The pediatrician that examined her asked a series of questions, including whether or not Abigail recently received any vaccinations. I told him that Abigail had received her 6-month vaccinations a month late, and had gotten them only 6 days earlier. I also mentioned that she hadn’t been herself the past week or so, and I was starting to suspect a food allergy as the reason for her behavioural changes.

The pediatrician mentioned that the seizure that I described (jackknifing forward at the waist, then reaching far backwards in a startle position) sounded like infantile spasms, and recommended we follow up with our regular physician the next day and have an EEG performed. We went home, confused and frightened.

The next day was quiet, although Abigail still seemed “off”. We received a call from the neurophysiology department at the the local hospital to schedule an EEG for the following afternoon. I also called the doctor’s office and explained what happened. They scheduled us for an appointment to see Dr. G, the GP that we were taking Abby to, the following morning.

On December 14, shortly after waking up for the day, Abigail had another seizure. Like the seizure two days prior, she manifested the peculiar motion of coming forward at the waist, and then moving backwards like a startle reflex. I called the doctor’s office, who advised me to still bring her in for the 11 a.m. appointment, but to bring her to the ER if she had another seizure in the meanwhile.

I arrived at the doctor’s office approximately 10:45 for our appointment. While waiting to see Dr. G, Abigail experienced another seizure. Up to this point, I had been alone with her for other seizures. Not knowing what to do, I called for help. The nurses frantically came to my aid and whisked us away into a treatment room, and brought Dr. G to us. While the nurses had seen what happened, Dr. G was too late.

She called up the patient record, and read over the ER’s report. She went and got Dr. E, the pediatrician who was practicing in the same office as her. He also read the report, and asked a few questions. He instructed us to go to the EEG appointment at 1 p.m., and then come back to see him; he would call over to the hospital and get the results of the EEG. He explained that infantile spasms displayed a specific pattern on the EEG that should be easy to identify (hypsarrithmia).

I went home in tears. I had begun reading on the Internet the night before about infantile spasms, and realized that I my worst dream was unfolding before my eyes. My husband came home from work at noon and accompanied Abigail and me to the hospital, where the EEG was completed. When we were finished, we went back across the street to Dr. E’s office to wait the results.

Finally, Dr. E was able to get a hold of the results from the EEG, and informed us that they were able to confirm that she has infantile spasms. He also talked to us about the probable course of treatment (ACTH) and the grim prognosis that these children normally have. He told us that he was waiting for a call back from pediatric neurology at the Children’s Hospital, and that he would call us at home once he heard back from them.

We went home and began packing. Dr. E called at around 8 p.m., and told us that we needed to be a Children’s for 10 a.m. the next morning so Abigail could be admitted for some additional testing and treatment. We left home at 7 a.m. the next morning, and Abigail was admitted to ward CH5 in Children’s that morning, under the care of Dr. B, pediatric neurologist.

Abigail experienced a number of seizures that day, and quickly began deteriorating. Between the Friday that we were admitted, and the Sunday two days later, Abigail experienced somewhere around 200 separate seizure episodes of varying severity and duration. Also in that space of time, she lost approximately a month of development, forgetting how to sit and feed herself, among other skills.

Abigail was subjected to a number of tests during her admission to Children’s, including a MRI and some metabolic screening. All test results came back as normal, except her EEG, which displayed the classical hypsarrithmia of the condition. She was eventually classified as having idiopathic infantile spasms.

Abigail began responding to the ACTH, and the frequency and severity of her seizures rapidly declined. We were discharged on December 22, with a follow-up appointment with Dr. B in Capital City on December 28. We remained in Capital City over the Christmas holiday, and December 26 was Abigail’s first “seizure free” day.

I had learned how to administer Abigail’s ACTH injections while in Children’s, and a home care nurse came by once a day between discharge and New Year’s to supervise me and to monitor Abigail’s blood pressure. We finally came home on Tuesday, January 2, 2007 with $3000 worth of ACTH (about 2 weeks worth), some injection supplies, and a great deal of uncertainty about what our daughter’s future would be.

It was my responsibility to administer Abigail’s medications every day. Initially, Abigail received 23 IU of ACTH by injection, in addition to 200 mg of pyridoxine orally once a day. A repeat EEG on January 10 showed much improvement. As previously mentioned, Abigail’s first “seizure free” day was December 26. However, on January 12, Abigail experienced a breakthrough seizure, and her dosage of ACTH was increased to 48 IU on January 13. Her dosage was again revised to 56 IU on January 14.

The increased dosage worked as intended, but the side effects from the medications intensified. I was required to bring Abigail down to the pediatric ward at the local hospital three times a week starting January 5 to have her blood pressure checked. In addition, she would also have blood drawn twice a week for analysis. Common side effects of the ACTH are hypertension as well as abnormal blood chemistry.

Also as a side effect, as is typical of most steroids, is Abigail experienced a significant increase in appetite. She gained approximately 20% of her body weight during the course of ACTH.

When the dosage of ACTH was increased, Abigail’s blood pressure skyrocketed to 149/98 (target blood pressure for her age is 90/60). As a result, she started a course of hydrochlorothiazide (HCTZ), administered twice a day, on January 18 in an attempt to control the hypertension.

On January 24, as a result of the HCTZ, Abigail’s potassium crashed to dangerously low levels. Abigail began potassium chloride supplements (KCL) three times a day.

Slowly, Abigail began to stabilize. The seizures adequately suppressed, I was instructed to begin weaning Abigail from the ACTH on January 27, with a dosage of 28 IU. The dosage was revised again to 14 IU on February 3, and again to 5 IU once a day on February 10. We attended a follow-up appointment with Dr. B on February 12. We also saw Dr. K, a pediatric nephrologist, regarding Abigail’s continued hypertension. We received revised tapering schedules for the medications, and instructions to follow up with them in May.

We were happy. January had been an excruciatingly difficult month; the ACTH made Abigail cranky and tired, but she refused to sleep. She gained weight at such a rapid pace that she was uncomfortable and her mobility was impaired by her size. She didn’t play, she wasn’t interested in engaging anyone around her. She ate at an astonishing rate, often consuming more food that either my husband or I in a single sitting. I was still nursing her, and I could barely keep up with demand while drinking five litres of water a day. She refused bottles. The hypertension gave her frequent headaches, and she would just sit on the floor and cry for hours on end every day.

For the first time in quite some time, we saw the light at the end of the tunnel.

However, on February 13, my husband and I both saw what we thought was a “staring spell”. In addition to the very obvious spasm-type seizure, Abigail also experienced the less common absence-type seizure, generally referred to as a staring spell. I called neurology on February 14, and they instructed us to bring her into Children’s for admission and diagnostic testing to evaluate whether or not the seizures were resuming.

Abigail was admitted to Children’s ward CH5 on February 15. They edged up her ACTH dosage from 5 IU to 8 IU, and ordered a repeat EEG. They wanted to perform a spinal tap so they could do an analysis of her cerebral-spinal fluid, but wanted to make sure it was absolutely.

Much to our relief, her EEG came back almost completely normal. There was no trace of the hypsarrithmia, although there was a slowing of the spike wave pattern in her left cerebral cortex. They are unsure what this represents, although there is suggestion that this could be representative of damage done by the seizures. After several days of observation with no additional indications of seizure activity, they instructed us to complete the weaning process from the ACTH. We were discharged on February 19 and sent home.

We began a course of hydrocortisone on February 19, as part of the weaning protocol. The ACTH and pyridoxine finished on February 24, and the hydrocortisone continued until April 1. We had a follow-up appointment with Dr. B on March 28, and were instructed to discontinue the HCTZ on April 3. Abigail has not required any medications since that time.

As previously mentioned, Abigail was developing at more or less a normal rate prior to the onset of her seizures in December. At 7 months of age, she was not rolling very much (although she could do it) and could sit very well on her own. She had superior fine motor control, and would regularly insist of feeding herself finger foods. She smiled and babbled happily, and seemed in every way a normal infant.

Between December 12 and December 17, she lost approximately a month of development. Regression is a common feature of infantile spasms; however the fact that she was developmentally normal up to that point bodes well for her long-term prognosis. It was well into the New Year, several weeks after the seizures were reasonably controlled, that she regained those skills.

During the course of ACTH, most of Abigail’s development halted, especially after the dosage was increased. The side effects of the drug are cumulative, meaning she got progressively worse the longer she remained on the medication, even if her dosage did not change. She lost approximately two months of development during the course of the ACTH, simply because she did not progress.

At her examination by Dr. B on March 28, in addition to an examination by Dr. E at 1 year of age, Abigail was still not exhibiting some of the reflexes normally developed by 10 months of age. Also, at her examination on March 28 (age 10 months), Dr. B assessed her as being developmentally at 7-8 months of age. Abigail only began rolling in earnest at the age of 10 ½ months, and began crawling at 12 ½. While she is not yet walking independently, she will walk with assistance and will “cruise” around furniture at this time.

Also at her examination by Dr. B on March 28, it was indicated that Abigail has an asymmetrical posture to the right. This was confirmed by Dr. E at Abigail’s one-year checkup. This is evident even to me, as a layman, when Abigail crawls or walks; she tends to lead with her right foot and/or arm, and the left drags very subtly behind her. It is very obvious when she’s wearing one-piece clothing, such as a sleeper or overalls, as her left leg gets caught up inside the garment because it does not clear the floor.

At this time, Abigail is forming non-specific words (Dada, etc), but we don’t think they’re being directed to anyone in particular (not discriminatory). She seems to be lacking some social and language skills that children of similar age often have, such as following one-step commands (“Give it to me”), even with use of gestures, waving good-bye, or responding to her name. She appears to hear well, and will be startled by loud or unexpected noises, will investigate unusual noises, and will smile at some “favorite” noises, such as the ringing of a bell.

We took Abigail to see Dr. E (pediatrician) on May 10 for her 1-year well-baby checkup, as well as to evaluate whether or not she should receive her 1-year immunizations. As previously mentioned, Abigail’s initial seizure on December 12 came just 6 days after her 6-month vaccination. While no conclusive studies have been completed on the subject, there is anecdotal evidence in the medical literature that vaccinations may act as a trigger for infantile spasms in children who are predisposed to the condition. When Abigail was initially diagnosed, there was a great deal of interest in the fact that she had recently received immunizations. There was also a great deal of interest in the fact that we had observed some behavioural changes in her in the days and weeks leading up to the seizure.

At the time of her 1-year checkup, we indicated to Dr. E that we had observed some of the same behaviours in the past week (i.e. aggressiveness, biting, general malaise). He determined at that time that we should be conservative and delay administration of her vaccinations on the worry that she may be experiencing subclinical seizures that the vaccinations may further aggravate. We were instructed to keep her under close observation and booked a follow-up appointment on August 7, 2007.

Dr. E also indicated that there is ongoing concern about subclinal seizure activity due to Abigail’s asymmetrical posture, although if that remains stable or improves it is likely due to damage caused by the seizures and treatment. We were instructed to continue observation and report any changes.

We had a follow-up appointment with Dr. K (nephrology) regarding Abigail’s hypertension on June 11. Abigail’s blood pressure has returned to normal, and it has been determined she had transient hypertension due to the ACTH and her file there has been closed.

The Whole Beef Enchilada

Who knew security comes at the price of a freezer full of meat?

Our beef order came yesterday! My nose and tongue were again happy as I browned some ground beef to make Crockpot Pasta Fagioli Soup for supper. After ordering this organic beef last fall and eating it through the winter, it was a rude awakening in March when we ran out and I had to buy yucky conventionally-produced beef. Needless to say, I ordered more this year. About twice as much. Hopefully we'll make it to next August this time.

I'm also anxiously waiting for my chickens to arrive, from the same people I get my CSA basket from. And I've been dutifully blanching, freezing and canning the summer bounty to eat later in the winter.

Now, let's be clear. I have never been hungry a day in my life; there was always food on the table. Good food, now that I think about it. But there's still security in knowing I have food to see my family through for weeks, months, an entire season even, on hand. Maybe that's part of human nature, the need to save during the feast for times of famine. Until very recently, our survival depended on it.

But there's also something liberating about it. It's like using cloth diapers: I am not dependant on running to the grocery store when something runs out. In the case of diapers, I just run a load of laundry. For food, there's always something to eat in the house. I might be beans that require soaking and cooking, mixed with whatever else I find on hand, but we will always eat.

I have felt that need for self-sufficiency for a long time, but it has recently been intensified by the book Animal, Vegetable, Miracle by Barbara Kingsolver. I have to thank Not Jenny for lending it to me. Michael and I have oft thought about our dream of a home in the country, with big gardens for me to putter around in, much like the gardens my grandparents had growing up. As a child, I didn't realize other families actually bought their vegetables; I naturallly assumed everyone's grandparents had a giant bin of potatoes in the cold storage, and a fridge full of carrots you could just help yourself to. Didn't everyone have a freezer just for frozen peas, corn and beans? And those little trays of "flying saucers" cooked in tomato sauce? I think I was well into my teens before I ate a store-bought jar of jam.

I think of how rich we were then. Not necessarily in money, but in food and memories and security. That aspect of growing up is one of the most intense in my memory, and it's something I strongly desire for my children. We worried if moving out to an acreage/farm would be difficult for Abby. We spent a weekend at my uncle's place out in the country for a family reunion: he has about 100 acres, a good 2 acres or so of yard. Abby was perfectly content to just be outside, without fences and boundries (I actually had to fight with her to come for meals). Our largest obstacle right now (other than money) is the desire to be in the city for ABA and other preschool services.

We'll just keep praying about it. :)