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LAST UPDATED - March 29, 2008

Many people have asked about my granddaughter and how she is doing health-wise. So I will shamelessly try to update you periodically on her health.

Lily has had a difficult time from the beginning. She was born prematurely at  She has not been a big eater and for a while, had to be fed by way of an ng tube. At twenty months she weighed 15 pounds, soaking wet. She was tested for a growth deficiency problem. We are still uncertain as to why she remains so "petite". She has described medically with phrase" failure to thrive".

On Easter of this year, my daughter, Amy, noticed Lily just staring of for brief periods of time. Arranging an appointment with her pediatrician who referred her to a pediatric neurologist for further testing. Shortly thereafter she was scheduled for an EEG.  After the test was finished, the nurse came out and told Amy that her would like Amy and her husband, Darrin to come back later. Lily was diagnosed with Epilepsy. Specifically  atypical absence seizures formerly known as petit mal seizures. Atypical absences seizures are more difficult to control especially in someone diagnosed with them at such an early age. The four months following the initial diagnosis have been very difficult for Amy and Darrin (not to mention the grandparents) but even more so for Lily.

Lily's seizures began to worsen. They came more frequently and lasted longer. Through the next several weeks, several anti-epileptic drugs were prescribed and administered. Lamictal, Keppra, Zonegran just to name a few. Side effects were always a concern, especially for someone so young. One of these side-effects was an appetite suppressant (just what a 15 pound twenty-month old needed).

Talk eventually started around a diet. An extreme form of the "Atkins" diet called the Ketogenic diet. I won't go into the details but it is suppose to work with children who do not respond well to medication (Lily). Seizures continued to worsen. At the worst point, Lily was having 150 seizures daily last as short as one or two seconds to as long as 7 or eight seconds. Compounding the problem was the fact that she was now losing her balance and  falling.

Lily was put on many, many prayer list and many people prayed for her health. Eventually, Amy changed hospitals and doctors and one of the first things the new pediatric neurologist did was order another EEG. Just an aside here. Speaking as a first time grandparent I can not tell you how difficult it was to watch this procedure occur. Although it was a non-invasive procedure, it tore my heart out to watch the technician glue twenty-some electrodes to my granddaughter's head with her crying and struggling to escape the grasp of her mother who herself was fight back tears. If there had been anyway that I could have changed places with Lily at that point, I would not have hesitated. It gave me a new perspective on what our heavenly Father must have experience when He allowed His only Son to go to the cross for our sins.

But for the first time in months we received some good news. The EEG showed that they were not the atypical absence seizures but were in actuality just the absence seizures. The neurologist changed medication to Zarontin. Almost immediately there was a difference. Her seizure dropped to under 100. With the next increase in dosage they dropped to about 50 per day, then a week of about 20-25, another increase in dosage and then sixteen seizures and as of Tuesday, June 28, she had had only eight in one day. I say only eight in light of eight compared to 180. We are pray that within the next few days Lily will be seizure free. If not, then we begin the Ketogenic diet on July 12 in an attempt to have Lily become seizure-free.

We are indebted to all friends and family who included Lily on their prayer lists.  We have always believed in the fact that God answers prayers and never more keenly aware of it as we have been for the last several months. We are not out of the woods yet. The ultimate goal is of course for Lily to be seizure free. Some keep her in your prayers and on your prayer lists and we'll try to keep you updated as often as possible. 

Update : July 21
Due to a touch of flu (?). The start of the Ketogenic diet has been put off until Monday, July 25. The number of seizures Lily has each day fluctuates. The least has been one, the most seven. Still praying that we will be seizure free once we begin the diet.  

 Update: August 22, 2005
On Monday, July 25, Lily began her diet. For mom, it began as an overwhelming prospect. Should can only eat certain foods and everything has to be weighed because she can eat only a certain amount of grams each day. The first couple of weeks were emotionally difficult. Lily has learned a certain amount of sign language and when she ate her allotment of food, she would say "peas more" and sign the same. Very heartbreaking. But the good news is that between the medication, the diet, and the countless prayers. Lily has been seizure free since that week!!!

    Today, August 22, she goes back for another EEG. This time to see if the combination of meds, etc. have taken care of the seizure activity in the brain or only the physical symptoms that are observable.

Update August 24, 2005

    Great News !!!! Amy received the results of Lily's EEG from Monday. Her EEG showed NO SIGN OF EPILEPSY. The EEG was what the doctor deemed "as normal as possible, no seizure activity. We now continue with the medication and diet and PRAYERS for the next year while she continues with medication and diet. This gives her brain the opportunity to develop seizure-free so hopefully after that period of time she can gradually be taken off the medication and diet and still be seizure free. Thank you all for all you prayers.

Update October 13, 2005

     Well, it has been almost two months since the last update and Lily is still seizure free! The past two to three weeks she has been off kilter a little. Not wanting to eat much, wanting to be held all the time, etc. Amy was concerned and took her to her pediatrician and found out that she had a double ear infection. She prescribed amoxicillin, which had to be ground up because the liquid version taken by most children has sugar in it and that's not on the diet. Well the two weeks have past, she is doing better, even eating better. She has finally hurdled the 17 pound marker! Last time she was weighed she tipped the scale at an amazing 17 pounds 4 ounces!!!
     Mom and dad are busy preparing for Lily's 2nd birthday. Hardly seems possible. It has been a challenging first two years at best but Lily has come through like a trooper. We pray the next two years go by a little easier.  Keep Praying!! See you soon.

October 23, 2005

    Well, I wish I had better new, but it seems that Lily cannot catch a break. We seem to clear one hurdle, and another is put in the way.
     It seems that she is now being revisited by the acid reflux problem she had as an infant. For the last week or so she has been vomiting on a regular basis and eating very little. Apparently the speculation is that this is the result of the high fat content of the Ketogenic diet. Lily had made it up to about 17.5 pounds and with this bout of reflux she has lost some of the weight gain. But, she remains in ketosis and has not had any seizures. Those of you who are parents/grandparent know how seeing you child/grandchild go through something like this is so heart-wrenching. It's hard to explain how Nancy and I feel. If there were any way we could trade places with her we would, without a moment's hesitation.
     The doctor has prescribed Nexium for her - more medicine - We pray that God watches over her and gives everyone the strength to help Lily. Please keep her in your prayers.

November 20, 2005
    The last month has been a very difficult one. On about the 25th of October, Lily was back in the hospital. Her eating habits, or should I say lack of them, had everyone concerned, again. She spent a couple days in the hospital on a Zantax IV drip. Hopefully clearing up her acid reflux. During this hospitalization, her doctor never stopped in to see her.  Halloween came and Lily was all decked out in her poodle skirt with the appropriate scarf and jacket - a 'Pink Lady' ala Olivia in the film Grease.
    For a while, we thought we had the problem solved...guess again. She began throwing up her Nexium and it appeared that the reflux was a problem again. Amy was pretty insistent, as were we all, that they needed to do an endoscope procedure to determine if there was any damage to stomach, esophagus or small intestine. This was finally agreed to after blood was found in Lily's stools.  The result of that test showed that there was some irritation and that the blood was prior to the administration of the Zantax and it was now in the process of healing.   
    So on November 17, Lily was admitted once again to Cardinal Glennon. She had blood work done and was given another IV with Zantax. Nancy took Friday off and went up to be with Amy and Lily during the procedure. It was during this time we found out that during the issuing of the orders, Lily's Zantax IV was administered in a solution which contained dextrose, contrary to what had been told to them. Lily was NOT to have dextrose because it would play havoc with her diet, consequently her ketone levels. So far nothing has been observed as a negative reaction to that incident.
    Lily's doctor, Dr. Frankenstein (oops! did I say that out loud?), said on Friday that they were going to do a stomach contents emptying study to check on the possibility of a hyiatal hernia, or if the contents of her stomach was not empting into the small intestine properly. This was suppose to take place on Monday, November 20. Howeverrrrrrr.... the doctor informed Amy and Darrin on Monday that the test would have to be put off until Tuesday. Reason being...her forgot to schedule it. That test is not going to be done at Cardinal Glennon, They will have to take Lily to St. Louis University Hospital. Why? No one knows.. They will probably have to put some sort of feeding tub in to make sure she continues getting the nutrition she need. However, she seems to be eating better at this point. Speculation is it the Zantax.
    So now we wait and see what transpires. Everyone has reached the point of frustration. Amy has an appointment with a new physician. She is not happy with the cooperation she is getting from this team.
    Through all of this, Lily has been a real trooper. In her brief two years, she has been in the hospital eight times. She knows the routine well enough that when they come in to take vitals, she lifts her arm to help with the process of taking her temperature. When they come in to draw blood or give a new IV she will lift her hand and offer it to the nurse. She roams the hallway with her IV trailing behind her saying 'hi' and waving to everyone she meets. She is a 'master thief', she steals the heart of everyone she comes in contact with. We pray that she remains in ketosis, that she eats well and ultimately gets better. We know that God has a plan for all this and that one day it will be made known to us...or maybe not.               
  

 December 25, 2005

    Well Christmas 2005 has arrived. Lily is spending this Christmas in the hospital. After her last admission and discharge she began the cycle of eating okay, initially, but eventually she would quit eating again. So earlier in the month they did another test to check if the contents of her stomach was exiting properly and an upper GI. Result were that she has acid reflux (no kidding), and that she was suffering from a condition known as delayed stomach emptying.
    The decision was made to surgically correct both problems. The acid reflux was to be controlled by a procedure called a "fundoplication". This would involve wrapping part of the stomach around the esophagus to prevent the stomach contents from backing up.
    The delayed stomach emptying was to be corrected by a procedure called a pyloroplasty. This procedure would involve making a small cut in the muscle near the pyloric valve of the stomach allowing the contents to empty faster into the small intestines where the nutrition could be absorbed more readily.
    The incision would run from her breastbone down to her navel, and take about 90 minutes.
    The came out of the surgery in pain, but doing well. Morphine is being administered but the amount is decreasing on a regular basis. This is being supplemented with Tylenol suppositories.
    Lily has been sleeping quite a bit due to the medication.
    In talking about the procedure with the doctor he indicated that Lily's stomach should have been the size of a baseball. Her was the size of softball. Apparently this was overlooked.
    The Dr. is pretty optimistic about the results of the surgery and we pray that this will correct the problem.
    So, while she recuperates we spend Christmas in the hospital.  
   
December 28, 2005
   
    Lily had surgery last Friday, December 23. Six days have passed and this is where we stand today..
      Although the surgery has been successful. "Sweet Pea" has been slow on the mend. In order to give both procedures a chance to start healing, she has not been given anything to eat since Thursday, the 22nd. She has been hydrated via a IV drip but nothing to eat until today...so to speak. Today she was given a formula for the Ketogenic diet. She was fed through the gastro-intestinal tube surgically implanted just above her belly button. The feeding takes place every three hours and is done over a 45 minute period. The formula is poured in what looks like a large syringe held above her head and gravity does the rest. She is given 2 ounces at each feeding. Each two ounces contains about 150 calories or a total of about 900 calories each day. The amount is limited today because she has to get use to a) food being in her stomach and b) give her stomach time to shrink back to a more normal size and c) prevent her from retching and possibly undoing her surgery.
    There was a possibility of her going home tomorrow but that faded when she gagged a bit after "eating" today. They are going to increase the amount taken at one time tomorrow providing she shows she keep the food down.
    Socially, she is not quite the same. She is very "clingy" with her mother, and has not walked much at this point.
    Neurologically, her condition has reduced her ketosis level to 'light' at this point and today was the first day she was able to take her epilepsy meds. Over the last two days or so, we have noticed her staring a bit more...could be the exhaustion, she hasn't slept much the last several days...or worst case scenario, could be seizures again....More to Come.
   

   Friday, December 30 

    The day we have all been waiting for. Received news that LILY IS BEING DISCHARGED TODAY!!!!!! We arrived at the hospital to help Amy and Darrin pack up all of Lily's things to take home.
    On a side note, the professional staff and volunteers at Cardinal Glennon have been absolutely fabulous. No one wants to be in the hospital, particularly over Christmas, especially a child. But if you had to be, they tried to make it as much like Christmas as possible. Lily received all kinds of gifts, from the hospital, from companies like Build-a-Bear, and from private individuals.
    When we got to the room no one was there. I gave Darrin a call and he said they had just gotten off the elevation after an excursion to the cafeteria. The moment we saw her we noticed an amazing difference. The difference between night and day. Lily was riding in the wagon, waving at people and saying hi to everyone in sight....he pre-surgery personality had returned. Big smiles abounded. What a WONDERFUL surprise.
    Technical Stuff... She is being fed liquid version of the Ketogenic diet through a 'G' tube that deposits he nutrition directly into the stomach. They have been feeding Lily several times a day through the tube. They started with two ounces of 'formula' and spreading that two ounces over a forty-five minute period. The goal is to reach five ounces, four times a day. The tube, which is about six inches in length,  does no appear to be a problem for Lily who , for the most part, seems to ignore it. However, when it is time to 'feed her belly' as Amy calls it, she does want to help. Usually she tries to hold the syringe into which the formula is poured. Eventually this tube will be replaced by a little 'button' the size of a pencil eraser. This will take place when she is ready to be fed solid food again. This will probably take place in about six weeks. When Lily is ready for solid food the button will be used only if she does not eat her all her food mechanically.
    At present, her epilepsy medication, vitamins, goes in through the tube. If things go along as hoped for, in about a year, max, the button will be removed.
    The next problem to deal with is why she is not stating in ketosis with this formula.
    Lily still is weak from all the events of the last week. She wants to be carried around all the time, which you have to force Nancy and I to do...HA! ( me thinks that perhaps Lily is developing a new condition called 'grandparentus manipulationus').
 

February 4, 2006

    It has been a while since the last update but it has not been a very tranquil period. With all that has happened during this time, I have also had to lay my father to rest. Dad was called home on Sunday morning, January 8 after two months of trying to recover from a series of strokes. Dad is finally at rest, and now he is back together with Mom, and they are happy and without pain and suffering and living together once again in the company of their heavenly Father...Dad, I miss you....

    Anyway,  nothing is easy. Although Lily's surgery was successful, she still is having problems. Since the surgery she has been gagging on a regular basis. Amy has tried everything from increasing the number of feedings with less food to decreasing the number of feedings with more food. I use the word food  loosely because her nutrition right now is in the form of a special Ketogenic formula. At present, Lily prefers not to eat anything, or very little, orally.

    It seems as though the smartest professional Amy has run across lately is her pharmacist who informed her that the 'gag reflex' is tied in with the nerves in the stomach. So now Lily is taking Nexium through her feeding tube twice a day. At present, it seems to be working. She is slowly gaining weight. She is back over 17 pounds and just as happy as ever. However (and there's always a however in life), she is beginning to become a little more 'independent' and has actually told Amy 'no' on a couple of occasions. But other than that, all is well.

    We still ask for your prayers for Lily. What we seem to have forgotten because of the trouble eating, the surgery, et al, that she is still a little pixie that has Epilepsy. Fortunately we have not see any manifestation of the condition again...and I hope we never do. Until next time.                                                                                                        

April 4, 2006

     Well, it has been two months since the last update so here is what has happened since that time. I wish I could say things have gotten a lot better, but I can't. Lily is still struggling with her eating issues. She is doing better than before but anything being eaten is better than nothing. Some  days she will eat more than others. She is still receiving the majority of her nourishment through her feeding tube. Amy says that they call it 'feeding her belly' rather than eating because they do not want her to confuse this procedure with actual feeding.

     She is having problems with gagging occasionally and it is not a pretty sight. This past Friday, Nancy and I took a day off because her brother, wife Diane and their three youngest children were down visiting. We spent Thursday night at Amy and Darrin's in order that we could baby-sit for Lily while Amy went into work for a couple of hours. About a half-hour after her tube feeding, she became very quiet and lethargic, put her head on my shoulder, something which she hardly ever does, and got very pale.  Shortly after that, she started gagging..what you might call dry heaves. She cannot throw up because the fundoplication procedure she had prevents that. This lasted about two minutes and after that she was fine and just as happy as could be again. We thank God that she has a wonderful attitude and bounces back so quickly.

     Anyway, Amy and Darrin were (are) getting quite frustrated and visited the doctor again and on Tuesday she had another upper GI done. The radiologist indicated that the opening of the esophagus was very small now, preventing the easy movement of fluid, or solid food. Great - something else she really needs. They now have another appointment with the gastroenterologist to decide what is going to happen next. The most obvious scenario is going to do some procedure to dilate  the esophagus so that it will make for an easier transition for the passing of food. WE HOPE!

     For those of you who have requested, I have included a short video clip of Lily. She is practicing her jumping skills and mom and dad have signed her up for a tumbling/gymnastics class so she is doing a few of her things.

     I hope your download time is not too long. It is really cute. It is best viewed with Internet Explorer. Scroll down to the viewer and click the start button. I've also added a few other pictures for you to enjoy.

June 24, 2006

    Well, it looks like it has been a while since I updated this page. Let me give you a quick synopsis of what has happened during the last three months.

    We have been back to visit our favorite hospital again. Sometime during the month of May Lily started to show weakness in her extremities and an unwillingness to walk. Amy, not wanting to let any grass grow under her feet, took her to the emergency room of Cardinal Glennon Children's Hospital where she was admitted. The initial diagnosis was Guillain-Barré Syndrome.  In order to confirm the diagnosis, a spinal tap had  to be done on Lily. Sorry, I just could handle that one.

    Anyway, the results of the tap indicated that she DID NOT have Guillain Barre' . Praise God. What was eventually determined was that she had something called a rotavirus. This insidious virus, apparently fairly common in young children, was draining her energy, also causing her to lose weight. She was given some medicine and sent home. The medicine apparently cleaned out the rotavirus pretty well. As well as everything else in her lower intestines. For a while, she ate better that she ever has.

    Right now, she seems to be having some eating problems again so they are giving her some medicine called Miralax (?) to clean her out again and restore her appetite.

    Her last visit to the Dr., Amy was hoping he would reduce the amount of medication she was taking for seizures because she had had none in a year ( that's right, with all of this other stuff going on, you kind of forget about the fact that she initially was diagnosed with Epilepsy) . The Dr. said "so far so good" and "if it isn't broken, don't fix it". He said if she still is doing this well in another year, then perhaps, we can think about cutting back on both the diet and the medication.

August 28, 2006

    It has been some time since the last posting and the memory isn't quite what it used to be but I'll try to give you an accurate update.

    Through the majority of July and August things have remained puzzling. Lily was stilling having eating issues. She just did not want to take any food orally. In addition, she was having a increasing problem with gagging and wretching. . She has had several doctor appointments the people at Children's Hospital. One of the doctors looked at the x-ray and indicated that t they needed to do a dilatation (make bigger ) the passage way  through the esophagus which was made smaller by the fundoplication. So  Lily has had another upper GI which according to the doctor "seemed to be okay" .  This did not sit too well with Amy. Another physician looked at the films and said that the passage way didn't look any different than before the dilatation.

    Amy decided to take her back to Dr. K.  who, in his infinite wisdom, decided that her eating and gagging problems were behavioral in nature. That she was causing herself to gag. Hmm.... how was she able to do this while in her sleep??? No answer.

    Reaching the conclusion that these folks didn't really know which end was up, Amy decided to see another dr. on the basis of a recommendation by a fellow OT. She suggested a dr. at St. John Mercy Hospital. She made an appointment and I accompanied her. This dr.  confirmed what Amy had felt all along. That it was a motility problem. The food just wasn't moving down like it was suppose to. So this dr. impressed Amy from day one. After a lot of questions the dr. prescribed an antihistamine - Periactin. This antihistamine would shrink the walls of the esophagus and stimulate appetite. Low and behold it worked. Lily has told us that she was hungry  and has been eating  a good portion of her meals.. Also, the gagging and wretching have stopped.

We are cautiously optimistic about the success of this med. Lily needs to gain weight. She still weighs less than 19 pounds approaching  her third birthday.

October 2, 2006

    Well hello again and it has been more than a month since the last update. Since the last update here is what has NOT happened. Lily has not been hospitalized. It has been about four months now..a new record for her. Her distaste for eating orally still exists and she is still being fed through her "j" tube in her stomach. She still wretches periodically but the number of incidents seems to be fewer and fewer. Ketogenic diet. Remember with all these other issues she has I often forget that she has epilepsy (seizure free now for fourteen months). The new physician seems to think that due to the fundoplication procedure, the wretching may not completely disappear. Now she seems to have trouble with sleeping...Nightmares or "night terrors" seem to plague her. What else can happen to such a little one....

    On the positive side, Lily is now officially potty  trained! This should help, hopefully with the constipation to the degree that she can now tell mommy when she needs to go to the bathroom. She is a little fuss-budget and does not like to run around with wet - or even worse - dirty Dora the Explorer underwear. She has also surpassed the 19 1/2  pound mark and hopefully by her third birthday  will pass the 20 pound milestone. Mom has decided that she has already reached that mark (with her clothes) and has decided to, finally turn her car seat around so that now she can see where she is going - not where she has been. She has started dance class and loves to show off her new tap shoes and her teeny-tiny ballet slippers. And believe it or not - she has started school - sort of - she attends St. Paul's early childhood program on the days that Amy has to work and her cousin, Leslie is unable to watch her. Time flies...

    Lily's First School Photos
    By the way, Lily says HI! 

December 7, 2006  

     Two months have gone by since the last update and I can say that during those two months only POSITIVE things have happened.

     In October, Lily experienced her third Halloween. This year mom dressed her up as a princess. She is of the age where she has a pretty good grasp on what's happening. Because she is still following the Ketogenic Diet she cannot eat (and never has) eaten any candy. It would have been very difficult for her to go out "trick or treating" and then come home only to have to give up the candy.  So Amy came up with a plan, they made a little sign for her bag and they went door-to-door collecting money for the Epilepsy Foundation. They collected over eighty dollars. Took the money and presented it to the local chapter of the foundation and they are now going to use her picture in their brochure. I must say, I am EXTREMELY PROUD of my daughter and granddaughter.

     During the month we also celebrated her third birthday with friends and relatives. Amy make a "special cake" for her. Because it had to conform to diet standards, not only did it look bad but tasted as bad as it looked.

     In November, we took her to her first circus. Ringling Brothers was at the Scot trade Center in St. Louis and we attended a Saturday matinee. Just watching the expressions on her face was priceless. She knew what elephants were from pictures in books but to be "up close and personal" to one in real life was amazing. I guess they turned out to be a little bigger than she realized.  

     Lily is not pretty much potty trained and can up on the potty by herself, as long as her little step stool is in front of it.

    She is eating much better on a regular basis although the combinations are not typical. Breakfast - cheesy Broccoli and black olives.

     She is FINALLY over 20 pounds and her car seat is now facing forward.

     We anxiously look forward and yet fear this summer. During July the neurologist has indicated that we will gradually start taking her off of the diet, and reduce the medication she is taking. We will then see if she will remain seizure free. Then perhaps we will be able to get rid of her G tube.   

 January 21, 2007 

       As we are about to enter the 14th month of this report there is nothing out of the ordinary happening with Lily.

        Weight- she is still around the twenty pound range.
        Height - she is about 32 inches tall
        Her general health is okay with one exception. She recently picked up the C-Diff bacteria, causing everyone a great deal of concern.   Sometimes it is difficult to differentiate between the normal childhood illnesses and something like the C-Diff.

        Christmas was a hoot. This being the first year that Lily really has the cognitive skills to understand the idea of Christmas, Amy really did the whole nine yards. We made reindeer food and sprinkled it outside. Wrote the letter to Santa - he actually took the time to respond with a letter of his own - very thoughtful Santa! Left cookies and eggnog for him and carrots for the reindeer.

        Now when we woke up the next morning, we weren't quite sure about things. As a matter of fact, Lily was scared to come into the living room because she thought Santa was still there. Priceless.

        Can't really think of much more to add right now so we'll see you next month.  

April 17, 2007  

        Since the last entry in January, the following events have transpired. In February, Lily was picked up some type of viral infection. The infection caused her to have diarrhea. In addition she was not eating anything orally and  was not tolerating her tube feedings very well. Gagging would interrupt of follow each of the feedings and the diarrhea took its toll on her little frame and she eventually dehydrated enough so that she had to be admitted to the hospital. She was given intravenous fluid and antibiotics. Fortunately she  responded quickly and only  remained in the hospital for two days.

        March came and   guess what - Lily came down with another viral infection. The doctor indicated that the constant reoccurring of the infection my be the result of her diet. By that I mean the diet results in leaving her in a more weakened, more susceptible to infection.

        This time the infection hit a little harder. Examining stool samples the doctors were able to rule out C-diff, however. she was still dehydrated. Back to the hospital. This time she spent four days hooked up to an i-v drip supplying her with antibiotics and her Ketogenic diet. By the end of the fourth day she was saying that she was hungry..was discharged, and for several weeks has eaten everything in sight...until this past weekend when she became ill again. Same symptoms. As I write these notes today, the question is will it turn into hospital stay number 17? To make matters worse, she now has fluid built up behind her ear drums. Her doctor indicated that somewhere down the line - ear tubes might be introduced into the picture. We pray not.  

August 26, 2007

        Well what has happened since April. Lily got over the infection without hospitalization. Yea! During the later part of April, Lily did have to visit an ent. The ent determined that she had fluid built up behind her ear and might need tubes in her ears and a have her adenoids removed. Mom and Dad hesitated because they didn't want anything to invasive..

        During the month of May it was determined that the ear tubes would be necessary. Yet to be determined would be the need for the adenoidectomy. Throughout this period of time Lily as been eating well. She is over twenty-two pounds and has had no other illnesses to this point.

        The month of June was spent waiting for a doctor's appointment. This month Lily gave her fist dance recital. She was the smallest in her group - big surprise. It was very cute. Were looking to July and her first EEG in quite a while.

        July 19 Lily had her E.E.G. We were  told that we would have to wait for information until July 25. The 25th we received the results - no  seizure activity. The E.E.G. was normal. Looking at the results Dr. Wong looked at the positives and negatives. Red flags are the fact that Lily's seizures began at an early age. Another red flag was the fact that she had so many of them. On the positive side was the fact that she has not had any seizures for two years with the medication and diet. Another positive was the fact that her type of seizures had been misdiagnosed. The type of seizures she has were absence (pronounced ab-sonce). Children experiencing these types of seizures tend to grow out of them and finally, the fact that she has not had seizures for two years.

        August 3 the ear tubes were finally put in but no adenoidectomy. Lily has shown no ill effects from the procedure. She has participated in a walk to raise money to find a cure for Epilepsy as well as selling lemonade at a stand set up by her mom to raise money. She has begun school and thrives with the love and care she gets from the teachers at St. Paul, Des Peres. In September Darrin, Amy, and Lily will be heading to Annapolis to visit Darrin's Brother Todd and his wife Amy as well as the dogs Shelby, and Toby. It is a much needed vacation.  

        In October, if things remain as is, they will begin to wean Lily off the Ketogenic diet. We are praying that the seizures do not return. We will be asking for your prayers again. Everyone is thankful for all the prayers to this point.

October  8, 2007

    The last month plus has been very trying. Just prior to their leaving for Annapolis Lily's eating habits took a turn for the worse. Not wanting to eat much -- if anything. If that wasn't bad enough she began wretching again. It has gone on throughout the entire month of September and into the early part of October. A visit to the dr. resulted in a possibility that no one had even considered. Dr. thought that perhaps the fundo done two years ago had possibly slipped and if that was the case, the surgery would have to be redone. An upper G.I. was scheduled to determine if this was the case. Last week the test was done and the results proved negative. The fundo had not slipped, the surgery would not have to be redone.

Speculation now focused on reflux once again. The thinking was that now the reflux has irritated the esophagus and that was what was causing the problem. The dr. prescribed a new medication to try to control the reflux. She has begun eating a little better. Amy has had to increase the amount of egg beaters and Ketocal once again to make sure she gets the correct amount of calories.

Lily's 4th birthday comes up latter this month. Her party this year will just be a simple one. Just family. Amy is already thinking about her 5th birthday next year. This will be a bigger party. When, as Amy says, "Lily will be able to eat all kinds of 'crap'.

On Sunday, October 7, Amy began to wean Lily off of the ketogenic`diet.

November 19

   As we head towards Thanksgiving, our family has a lot to be thankful for. Nancy, Amy, Lily, and I, recently recently attended a  wholeness service at Amy's church, St. Paul's, in St. Louis. It was a very emotional service (click here to read about it).

   Lily's fourth birthday was celebrate with members of the immediate family and her cousin, Jennifer, her husband Warren, and their kids. Her cousin Kevin, his wife, Leslie, and their children. Very low key, but enjoyable.

   Lily, who is into the 'princess' thing right now, dressed for Halloween as, what else, but a princess.

   As far as her health goes, about a week ago, Lily had a bout with what I can only assume was a bad case of the flu. She lost her appetite, gagged for several days, and, of course, lost weight. She went from 24 pounds down to 22 pounds, 3 ounces. But as of this writing she is back to eating again and hopefully gaining that weight back, plus more. The illness caused a delay in furthering the alteration of her diet for a while, but that change has now been made. She is getting more calories and less fat as she is weaned off her Ketogenic diet. We thank God that so far she has shown no ill effects from the alteration. Meaning we have seen NO SEIZURES. We still have several months to go before she is completely off the diet. We thank God for all his blessings and we look forward with great anticipation to celebrating the birth of our Savior and another Christmas with Lily.

December 31, 2007

    As we approach the start of a new year (30 minutes from now as I write this). I look back this  past year and all the blessings we have received. But mostly, I reflect on the fact that for one entire year, Lily ha not been in the hospital.  Oh, she has been ill, but not ill enough to require hospitalization.

    Since the last entry, we have experienced the joy of watching Lily in her first Christmas program at her school, and have enjoyed celebrating her 4th Christmas. She received several very nice gifts from friends of the family, especially a remote control Barbie car from Barb and Fred. She drives it all over the place and loves the car. She received things from Mommy and Daddy, Grandma and Grandpa, and of course from Santa. However, through all this she has everything in the proper perspective and knows that we are celebrating the birth of our Savior, Jesus.

    She and Mommy baked cookies, made reindeer food, drew a picture and did all the appropriate things. She  had the opportunity to visit with her Aunt Connie from Florida; and her Aunt Lisa, Uncle Jerry and two cousins Nathan and Marina who were visiting from St. Thomas in the Virgin Islands

    Health-wise, she is going through a period where she is generally eating well. She is back over 23 pounds. The reduction of her diet continues on a regular pace and for the first time I can remember she ate something that I would consider 'junk food' - Trix cereal. The portions she receives now actually amount to something that looks like a meal. This would include roast beef, turkey, and even miniature grilled cheese sandwiches.  It is my understanding that reduction of the diet will continue for another 4 or 5 months. we thank God that everything is going along well in that regard and that there are still no signs of seizures.

March 29, 2008

It’s been a while. Since I last made entry, both the New Year and Easter have come and gone. Things have been very positive with Lily since the New Year began. Amy has been gradually weaning Lily off of her Ketogenic diet. She is down to 1.5 (not absolutely sure of what that means) with the ultimate goal of 1.0 which is pretty close to a normal diet.  Amy has been increasing the number of carbohydrates that Lily eats and has been decreasing the level of fat. Most of the time her meals look pretty normal. For example a meal might be “sawsage”, as Lily calls it (sausage), she will also have corn, “lello” (yellow) cheese and either some tangerine sections or banana. She caps of her meal with her new favorite food: graham cracker “bees”. She will eat the wings first and the go back and eat the rest.

Right now her ketones are running between moderate to heavy instead of always heavy. As the diet comes to an end, her ketones will run from low to low to moderate, at which time we are going to begin seeing things if it’s going to happen .

Amy has a doctor’s appointment for Lily in April to see if there is any seizure activity going on in the brain. They will be going to Disney World in May and they want some of an idea of her condition before they leave for Florida.

We hope that you will keep Lily in your prayers over the next several weeks.

Thank you everyone,                                           

Love, Lily

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