Grady's Struggles and Triumphs for 1998

The Story of Grady's 1st Year

Birth-February

March-April

May

Birth - February 1998

After the immediate dangers of brain swelling from the damage and organs that didn't function well were past, the biggest hurdle was trying to get him to eat. He eventually starting taking the minimum that he needed by mouth a few days before his discharge. At home he continued to do well with eating for about a week. Grady then started a colicky period and started eating less and being very difficult to feed. He was starting to show signs of a reflux problem. Although medications helped, it was a continual struggle to get him to eat. He often spit up about 20% of what he ate. All during this time he arched frequently and had variable muscle tone.

March - April 1998

I have a pretty spotty recollection of what happened when during this time. Also we didn't take many pictures. By the end of February, Grady had starting looking rather skeletal although he did gain some weight. Our pediatrician suggested going back to tube feedings and considering a gastronomy tube instead of a nasal tube as he had in the hospital. She also suggested a surgical procedure to solve the reflux problem --- a Nissan Fundal Plication. We were pretty resistant to the idea of surgery and wanted to wait and see how things went with the reflux medications first. We opted to use a nasal feeding tube and, Carol, a home care nurse, came to our house once a week for a month to weigh Grady and to replace/reposition the tube as necessary.

This time period was very stressful for all of us but we got through it with a lot of support: Carol, our home care nurse, our pediatrician, Dr. Turzai, the people from the Alliance for Infants and Toddlers (especially Colleen and Diane who came to work with Grady for an hour each week), our neighbors (especially our next door neighbors, the Allens and Doloris who lives down the street), and all of our local friends (who visited often and brought us meals, especially Stefni!), and our long distance friends and family (who called and wrote).

Sometime during this timeframe, Dee, from the Alliance for Infants and Toddlers, told me about, Child's Way, a new facility for daytime care of medically fragile infants and toddlers that would be staffed by pediatric nurses to handle medical care and therapists to engage the children in developmental play. It was scheduled to open at the end of March but because of construction and inspection delays they didn't open until mid-May. We went to their open house for families and decided that this might be a better, safer option than trying to find an in home babysitter. Besides, I couldn't imagine how just one non-related person could ever be dedicated enough to be able to care for Grady when he was miserable for long periods of time each day.

At the end of April, Brian's mom came to stay with us for 2 weeks. I needed to get back to school to work on my dissertation and couldn't wait until Child's Way opened.

May 1998

At the beginning of May, Child's Way still wasn't open but Vicky (Deloris, our neighbor, put me in touch with her) helped me out by babysitting part-time. In mid May, Child's Way was open for business and much to my surprise we were their first and only customer for the first week. The next week, Isabella (who was about 3 months old) joined Grady at Child's Way.

During his first few days, the nurses at Child's Way told me that he was in a lot of pain. Up until that time I think I just called him fussy because I didn't know any better. We had scheduled a swallow test for mid-week that week and the doctors suggested during the test that we we replace the nasal tube that emptied into the stomach with one that emptied into the intestines because the were concerned about him possibly aspirating on the reflux. This change was a dramatic improvement for Grady. Since the food went into the intestines there were two valves that had to fail for there to be significant reflux. We continued to give him about a third to a half of his intake by mouth. I suspect that the reflux had burned his esophagus in addition to the possibility that he had been aspirating on it.

June 1998

This was the timeframe of more diagnoses of problems and further improvements in Grady's comfort level.

At the beginning of June, Grady was diagnosed with cortical visual impairment (CVI) and the doctor said that at this time we could declare him legally blind. CVI means that his eyes are fine but the brain isn't processing the vision signals very well. Typically, CVI children can see colors but not shapes. They prefer red and yellow and shiny objects and only attend to objects that are moving. With early therapy, his vision may improve, but without it he will become functionally blind.

In mid June Grady's NJ tube was replaced by a longer-term GJ tube. It still empties into the intestines but instead of entering through the nose the tube was inserted through the stomach percutaneously. That means that instead of making an incision the doctors poke of hole in order to insert the tube. It doesn't take as long to recover from the procedure but there is a higher risk of infection. Grady didn't do as well as expected. He developed a fever and had to stay in the hospital longer than expected. Fortunately the fever went away after 24 hours and it wasn't caused by an infection. They aren't sure exactly why he had a fever. It could have been a reaction to the procedure or a virus that was going around at the time.

While he was in the hospital we also scheduled an EEG. Once the neurologist got the results, he diagnosed Grady as having infantile spasm seizures. (Here's an interesting link on young children with seizures.) According to the neurologist, infantile spasm seizures is a very bad sign as it is another indication of the severity of the brain injury. The seizures further disrupt and delay development. They will go away by the time he is 2 or 3 years of age but they will most likely be replaced by other kinds of seizures. Grady's seizures were about 10 seconds long and happened about 30 or more times a day. They were very irritating to him. They were all partial seizures (he didn't lose consciousness). He had a startle type of reaction where he always jerked his head to the right as though he had heard something and he had occasional jack knife seizures and a few absence seizures.

Grady was started on clonazepam (klonopin). I've read that this type of seizure is difficult to treat and what sometimes works for one child or at one particular time will not work for another. From reading the web pages of other childrens stories, it is obvious that finding the right medication can only be discovered by trial and error at this point. The clonazepam has helped some but it isn't controlling the seizures. With the reduction in the intensity of the seizures, Grady is much more pleasant and seems to be reacting to his environment.

July - August 1998

Grady's personality has continued to improve. He started smiling and will occasionally make little noises at the same time that sound like faint giggling.

Grady's startle seizures, where he jerks his head to right, have changed to a bobbing seizure. It started very subtly as a little mouth and chin tremor that I thought I might be imagining at first. It eventually got stronger over a period of days until it was unmistakeable. Every day it got a bit stronger until his left thumb and arm got into the act too. The neurologist doesn't want to increase the doseage of clonazepam because Grady has a side effect of increased salivation and he isn't handling it well. He chokes quite often. Apparently the clonazepam was only ever a temporary measure at best because it tends to loose its effectiveness over time.

Our choices are ACTH (a steroid), depakene and vigabatrin (which isn't yet available in the US). All of them but the vigabatrin have known, bad potential side-effects. With ACTH there is all the usual danges of steroids. It seems extremely dangerous and it is an extremely unpleasant experience for the babies who have had to use it. Grady would have to be hospitalized at the beginning to be closely monitored and watched. The depakene has a 1 in 500 chance of liver failure. The vigabatrin is very new and while there are no findings of side effects and it is reported to be as effective as ACTH there have been some reports of optic nerve problems. The doctor has recommended we try the depakene first.

After a lot of reading and feeling very nervous, we made the decision to try depakene first but we delayed starting it until the end of August because we had a few more questions to ask the doctor. We wanted to check that the 1 in 500 liver failure side effect was not for the entire population of users (seizures, migraines and manic depression) but was just the population of children under 2 with severe seizure disorders.

September 1998

Grady's opthamalogist was pleased with Grady's progress in his visual development. He now tracks objects fairly well and shows interest in novel objects (which is unusual for CVI). He is still partial to moving objects and his lower visual field doesn't appear to be as good as the upper. It is better to show him things from the sides or from the top to the midline of his visual field.

Grady has learned to squeal to a peek-a-boo type of game that he came up with on his own! One day I bent down to get a diaper while he was at the changing table and he squealed when I disappeared from his view. When I popped back up to see what was wrong he had a big smile. Without prompting, he has done this at different changing tables as well (he started doing it at Child's Way as well). So it seems he has generalized this game to other changing tables. Brian experimented around until he found out what version of peek-a-boo would work away from the changing table but it only consistently entertains Grady when Brian does it! Grady has a definite preference for Dad. He probably thinks that I'm his evil chauffeur since I take him daily to Child's Way and to doctors appointments and he isn't particular fond of riding in the car!

There wasn't much change in Grady's seizure activity. The depakene isn't making any noticeable difference yet. We had one scare where Grady spit up three nights in a row and his bobbing seizures seemed to have changed some at the end and he was more tired. We went to the ER to have him checked and his blood tested for liver problems. He was fine! The changes seemed to have nothing to do with the new medication.

During the very last days of this month, Grady stopped having clear visible signs of seizures!

October 1998

The good news is that the seizure activity has continued to be noticeably absent. Grady had an EEG at the beginning of the month and while there are still abnormalities, it has improved greatly since the one in June. They didn't record any seizures during the test. The neurologist upped the depakene dose to see if we could get rid of the remaining abnormalities and has started weaning Grady off of the clonazepam. If he continues to do well without the clonazepam we will be able to start weaning him off of phenobarbital. The danger of liver failure is greatly increased with depakene use and multiple seizure therapies, hence the reason we need to get Grady off of the other meds soon.

During the 2 weeks of cutting back on the clonazepam, Grady has had some rythmic lip smacking. This may or may not be seizure activity. We are holding steady on the current medication levels for 2 weeks to see what happens.

Unfortunately Grady caught a virus that was going around. Although he didn't have any breakthrough seizures during his fever, he did have some startle seizures and maybe a jack knife seizure on the 30th when he started another low-grade fever. We hope this is just a breakthrough seizure because of the illness. We will give him another week to see what happens since he still isn't over the virus. I have reason to believe he caught two different viruses back to back. I caught a cold a few days after Grady first fell ill. I assumed I caught it from him and wasn't very careful after that. Grady started coughing and having a drippy nose a few days after that. I should never assume that we have the same bugs!

Grady has gotten bored with the squealing apparently. I miss it! One of the noticeable changes with the cut-back on the clonazepam is that Grady is more active and his head and trunk control have improved some. He still isn't to the point of being able to hold his head up for more than 10 seconds at a time. He has to open his mouth wide to do it and when he closes it, his head drops. One therapist explained that he hasn't learned to distinguish between these muscle groups to control them individually. She likened it to when a woman applies eye make-up and must open her mouth to keep from blinking.

For Halloween, Grady went to daycare as a Scottsman! He kept showing everyone what he was wearing under his kilt!

Grady has three teeth now that are slowly emerging.

November 1998

Grady seems to have a sinus infection. We started him on an antibiotic on the 6th and the congestion seemed to be mostly cleared up by the 11th. On the 10th the neurologist said that we could decrease the clonazepam dose further. He should be completely off of this medication in 4 more weeks. As the clonazepam doseage decreases Grady's activity and alertness have increased. Unfortunately, his dislike of car rides has also returned and is increasing.

The visit to the GI doctor confirmed that we should not try to give Grady more than tastes of food. It is more difficult to learn to eat properly after the first year but it is better to take 5 years to learn to eat than to regularly aspirate on food. I'm greatly relieved to hear this since it has become progressively harder for Grady to swallow and the pediatrician had been encouraging us to try to feed him more by mouth while it is easier to learn. We are hoping that when Grady is completely weaned from the clonazepam that his swallowing will return to at least the level it was at before the medication. There is a possibility that the medicine is not at fault for the worsening of his ability to swallow. When Grady has been off of the medication for a while, we will do a repeat of the swallow test to see how well his swallow reflex is functioning. My guess is that Grady may be a bit too actively involved in the process. He seems to swallow quite well when asleep.

The visit to the opthamalogist confirmed that Grady's visual development has continuted to progress. Grady is using his right eye more than the left but the Dr. wants to wait a bit longer before patching so that we don't inadvertantly cause his progress to halt. He may be ready for patching in February. In the meantime we will work harder to try to encourage him to hold his head in midline and will try to present things to his left a bit more. We tend to sit on his right side despite my best intentions. It is much more fun to sit on the right because he is more responsive.

Grady has been saying "ga-ga-ga" quite regularly and on the 21st started focusing on saying "ba-ba" instead. Once in a while he says "mmmmah" and once in a great while a mix of d's, t's and l's all in the same breath. Still no vowels other than aah and uuhh. He now smiles and coos in response to hello and a wave and it looks like he is trying to raise his hand to wave back. His favorite song is farmer in the dell. He seems to try to join in on the "hi ho a dairy-o" part.

Grady is also reaching out to touch things more consistently although his aim is still a bit off. He is sometimes quite good at pulling off my glasses and holding them when I get close enough and am wearing them. He sometimes strains and grunts a lot in what I interpret as an attempt to move his arms. I think he can't separately signal for some muscles to relax while others are contracting. They all seem completely contracted or completed relaxed. It seems to me that there is more promise of progress in his arm control at this point than in his leg control. When he first wakes up he does some wonderful stretches during which he brings his arms straight out in front of him and then in to his face. Once he is fully awake he doesn't have this same range. His legs still only move in just two directions even when he is stretching.

Grady's PT, Beth Jacks, has fitted Grady with AFOs (ankle-foot orthodics) so that he can use a stander. The AFOs support his foot and ankle muscles so that they won't be damaged while he is standing. Grady is a little small for a stander (the knee supports are at his stomach so of course we can't use those) but he really likes this position. We have a loaner at daycare right now. Beth is working on ordering one for Grady.

Grady also enjoys sitting on his knees and leaning forward against a support. He does quite well at trying to hold his head up and look around when in this position. He is holding his head up for longer periods of time now.

Just after Thanksgiving, Grady and I both got sick again. This time they think that he had a HIB infection since his ear and opposite eye and sinuses were infected. They didn't do a culture but instead but him on an antibiotic which certainly helped. The only problem was that it gave him mild diarrhea.

December 1998

After making it up to 19lbs and 12 oz for the second time, Grady has dropped back down to 19lbs and 5 oz. This may be partly due to the mild diarrhea from the antibiotic he took for an infection at the end of November and partly it could be his increased activity level. Now that he is completely off of the clonazepam, he is frequently irritable and cries, however he is usually consolable. The one exception is the car. He has resumed screaming while in the car. I've tried everything I can think of to make him comfortable and to distract and amuze him but to no avail. I'm now resigned to just trying to block him out so that I don't get in an accident! Since the infection at the end of November, Grady has had trouble napping. He frequently startles awake as he drifts off or he will suddenly wake up crying after being asleep a short time. This might be a type of seizure activity. I guess we'll see which way it goes. Perhaps it is the result of weaning him off the clonazepam. Maybe he still hasn't adjusted to its absence. The neurologist isn't too forthcoming with information in this regard.

Grady had a nice open house birthday party at home with friends and neighbors dropping in for cake and punch and a visit. Since one of Grady's favorite toys is a ladybug balloon, his cake was decorated with lots of big ladybugs. He seemed to like the birthday cards the best.

Whereas Grady use to complain about being carried upright against a shoulder, he now seems to like it and holds his head up for longer periods of time to look around. He still doesn't like it if you stay in one place too long. Apparently, he likes to see the sights!

At Grady's one year check-up we asked whether the doctor could make any predictions or give a prognosis about Grady's mental and physical development given his history so far. The doctor said we will have to wait and see still. He said that there is still a lot of growth and development that happens in the 2nd year so it is too soon to make predictions about whether or how far Grady will progress developmentally. So it isn't that we're holding out on passing along anything! However, just so you know, Grady still hasn't soundly achieved any major physical developmental milestones. He visually tracks objects and sounds, smiles, and coos and babbles a bit. Three or four times he has rolled to his side. He also bats and reaches but with little accuracy and he can bear weight with his arms and legs and hold up his head for short periods of time.

However, I have read that with a diagnosis of infantile spasm seizures and Grady's history, the chances of him being severely to moderately retarded are pretty high. However, statistics are just statistics. There was only a 1 in 200,000 chance of the type of cord compression we experienced at delivery. Maybe we'll hit the jackpot again so to speak and he'll only be mildly retarded.