2/9/03
(age 35 months) We have made the decision to decline on the G-tube, we will opt for the NG tube instead when medically neccesary. Conner's health still the same as the last time I wrote, Although still battling seizures.
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3/30/03
TODAY WE CELEBRATED CONNER'S 3RD BIRTHDAY!!! THIS ONE WAS A ""HUGE"" ONE FOR US!! Last year when the seizures started, I almost didn't think he would be able to continue the STRUGGLE,for much longer, but he proved us WRONG!!! WE ARE SO PROUD OF HIM FOR BEING SO STRONG. HAPPY 3rd BIRTHDAY: "Little Man".
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4-11-03
(age 3 years 1 1/2 weeks) Conner had his NG tube placed today, and it went surprisingly well. The tube will be used for meds and liquids only for now, he is still able to eat by mouth blended foods and stage 3 baby foods.
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5-21-03
(age 3 years 1 month 3 weeks) About a week ago a sudden increase in severe tone has developed, this is making Conner very uncomfortable and even his breathing is heavy, because of the tightness his clonus is much worse throughout his arms and legs, and I have also noticed that his vocalizing has slowed. A medication called Baclofen has been given by his Dr.
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6-14-03
(age 3 years 2 1/2 months) I believe now that Conner is having a problem with digesting his food and that is what is some of the cause of this tightness. I am now trying some predigested formula, he seems to be tolerating it much better. I will give it some time though, to determine if this helps. The Baclofen only helps dose to dose, and only really makes him sleep, but then when he wakes up he is back to shaking and being stiff. He has developed muscles like that of a body builder, from the tightness that has sent in.
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7/15/03
(3 years 3 1/2 months) Well I am glad to say that Conner is now doing much better, I do not believe it was the food problem, although we adding digestive enzymes to all meals, and still using pre-digested formula just in case, no one knows for sure why he was having the problems he was, but with the Ativan added to the Baclofen we have been able to control the muscle tightness. He is now much more comfortable. Conner has now reached 3 years and 3 1/2 months, and after a hard month and a couple weeks of the increased muscle tone, we have now been able to get him stabilized again. He is on Ativan and Baclofen to help control the problems he was having, he lost alot of body fat and developed alot of muscle, so he has been placed on a high carb, and high-protein diet to help him gain some weight back. It is working, he is starting to look back to his old self again and able to rest comfortably. He has been discharged off of the weekly Hospice visits that we started around his 3rd birthday and been cut down to 2 visits a month. His doctors, specialists, therapists and nurse are amazed how well he has done, and how healthy he has remained. He continues to fight and not give in quite yet. This age has meant alot to me for him to reach and those who know our family know why. When he turned 3 it felt like he had graduated from high school or something, and now it feels like he just graduated college. It is amazing to me that even though these kids die at such an early age, these special ages that they reach are huge milestones, and those milestones make us so unbelievably proud as parents. We cherish every single day which to us we consider a year, and seconds feel like hours. We will never be able to express how utterly proud of you we are Conner, We love you so much!!
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7/30/03
(3 years 4 months)Well just as I had thought that things were better, Conner was admitted to the ICU at the childrens hospital on 7/27 because of seizure activity that lasted about 12 hours, they had to give him an adult dose of Ativan to stop the seizure, it was a type 3 Grand Mal, after giving him this medicine his heartrate dropped to 43, and blood pressure dropped to 52/20, blood pressure meds were given and O2, that helps to stablize him, however he was placed in the intensive care unit for observation, the next morning after the meds started wearing off he was weaned off the blood pressure med and the O2. The ran numerous tests to check his physical condition, which all came back normal, he stayed stable and was released today, the doctors have added seizure med #3, and will hope that this keeps the problem under control, his neurological state is highly compromised from the disease but he is in good physical(internal) shape, the Dr's are estimating another 6-9 months of life, we will keep our fingers crossed that he can hang on as long as he can, we feel that when he is done fighting he will let us know.....feeds have been withheld for 4 days now, so we are working on restarting them, this will be a slow process to get him back on track.
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8/15/03
(3 years 4 1/2 months) Well I wish I could report that Conner seizures were under control but they are not and they are still trying to find the right recipe and amount of meds to get him some relief. He is continuing to loose weight and the muscle mass that he developed is now throughout his whole body, there is not an ounce of fat on him, muscle, bone and skin. He is looking very sick these days. Feeds are not going well due to the seizures which make him throw up, pedialite only on the bad days, mixed with a little protein powder. Regular feeds on the good days, but it seems like we are having more bad days then good lately.
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8/30/03
(3 years 5 months) We have good days and bad days but I would say that finally things are starting to calm back down again, up and down as you read these updates, I know, Conner is now responding well when the Diastat is given, to stop the severe episodes, and he is gaining weight back slowly but its a start, as I waited and held my breath to get to 3, here we are 5 months later and wow how the months have flown by. Keep going little buddy, you are amazing!
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9/15/03
(3 years 5 1/2 months) We are down to one episode a week, which is so much better. The Diastat stops the seizure, and then he can rest, the remainder of the day or night. He is doing so much better then he was, weight gain is coming along but yes still slowly. Although with the ounces he has gained back you can really see a difference.
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9/30/03
(3 years 6 months) Well despite some hard months Conner has reached 3 and 1/2!!! We will have a 1/2 birthday celebration today!! Things are so much better, he has not had any need for he Diastat in 2 weeks now, no episodes lately. The weight gain is still going well. Overall I would say that Conner feels better, he is calm and comfortable, and we have even been having some giggle spells again. We have started to joke that he is like the energizer bunny, he just keeps going and going! Keep up the strength little buddy, you truely are incredible!!!
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11/01/03
(age 3 years 7 months) Conner has had a great month!!He has had no seizures and still is calm and comfortable. He has had a sinus infection but he got meds and it is going away. Conner was a Dinasaur for Halloween, and stayed home to help pass out candy. He has gained 2 pounds now since Sept. and we are hoping that he keeps that up! Not much more to report, everything is going well.
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11/15/03
(age 3 years 7 1/2 months) Conner still doing well, not to much new to report, things still about the same as last time I wrote, Conner still maintaining his weight, feeds still going well, No signs of any seizure activity in quite some time now, we are looking forward to Thanksgiving, and we will have special prayers at the dinner table this year, Being so thankful that Conner is getting to be here with us for another Thanksgiving!
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11/30/03
(age 3 years 8 months) We had a wonderful Thanksgiving, Conner is good, no changes really.Conner is very stable right now and we are just so glad for that.
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12/15/03
(age 3 years 8 1/2 months) Well we are still blessed with Conner's continued health and the fact that he is still doing so well. We are having no problems at this time and are looking forward to Christmas. We can not express how thankful we are to have him here with us for another Christmas, we will truely celebrate!!
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12/30/03
(age 3 years 9 months) Conner is still doing great, he is at a good weight, and calm. No signs of any problems. We have now just 3 months until his 4th birthday, we have made him a chain of rings for the countdown to the 91 days he has until he turns 4, we will cut one ring off a day until the big day. This is something we are really looking forward to and all the continued prayers you all are giving him, we help see him through the next 3 months. We thank everyone for your support, and encouragement you are giving to him, and us. Age is not always important for some families of children with these diseases but for us, the simple fact that all doctors have said that children rarely make it much past their 3rd birthday, and we have found this to be true, for Conner to reach his 4th will be quite the accomplishment! So we will take things day by day and see what happens, as always though we are thankful he is here TODAY.!!!

At the end of January we took a trip to Florida, where we are actually planning on moving here in the next few weeks, while there looking for our new home, we got to meet another Sandhoff family, the Buchanans, parents of Karah who passed Jan. 1, 2003. This made the 2nd family we have had the pleasure of meeting in person, it was another great experience. There is some sort of un said peace being with a family that has gone through the battle you are. We look forward to moving to the beach and hope Conner will gain some relaxation from the ocean. We really feel this will be good for Cailee too, a whole new atmosphere for her to explore.
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2/1/04
(age 3 years 10 months) Well we have just gotten home from a hospital stay. Conner was admitted to the hospital 1/28/04 for his first pneumonia. It was a mild case, along with the pneumonia, Conner also has an infection in his blood. Iv meds were given during his hospitalization, and he is now on oral meds at home. The Dr's have said he has Restricted Lung Disease, because his Carbon Dioxide levels are extremely high, although the acid levels in his blood that are usually affected with this condition are normal. The opinion is that his Carbon levels have been this way for some time and his body has compensated well. His O2 levels have been lowered since the onset of his pneumonia, so he is now on supplemental O2 here at home, along with a pulse ox machine to monitor his vitals. We hope to keep Conner as well and comfortable as possible and fear that we may heading into some major respiratory issues. With the onset of this 1st pneumonia, it has opened the door for his lungs to be weaker and more suseptable for infection. We will watch him closely and update again soon.
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2/16/2004
(age 3 years 10 1/2 months) Its an amazing thing since the night we have gotten here to Florida, that Conner has been off the supplemental O2. He couldnt seem to keep his stats higher then in the 80's on room air. However the night we got here I hooked him up on the pulse Ox machine to check him, and to my surprise he was at 100%. He has not been on oxygen even once since we have been here. You know everyone laughed and joked about what he would pull right before we left Ga, and out of no where he came up with pneumonia the week before left. Another thing that I didnt mention in the last update was the little other stunt he did to me. The night we arrived at the hospital, I took him upstairs to his room, layed him down and the nurses were getting ready to check him out. I went back downstairs to admit him. Not 2 minutes after I got down there, I here over the loud speaker CODE BLUE ROOM 205, CODE BLUE. Ok, that was Conner's room. I ran back up there, where I found like 800 people in and out of his room. The were like Oh mom dont worry he is fine. I was like WHAT?? I walked over to him and said to him, Conner what are you doing? He just looked up at me with this smirk, like HAHA got you! The nurses and Dr's said to me, that was really amazing how he came right back, I said No its not, Thats Conner! I swear this kid is laughing at me in his head. I tell him that these kind of things are NOT funny, do you think he cares, NO. I think he gets more out of life laughing and giggling at me in his head, then anything else. Whats next in his bag of tricks? Only time will tell!!!!!
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3/1/2004
(age 3 years 11 months) Conner has had a sinus infection, but took his meds and is now better. The weather has been nice and so we have been able to take alot of walks on the beach. This feels like it will be the longest month ever. The anxiety of this whole birthday thing is going to drive me crazy. But I will get through it!! Conner is doing good and everything seems to be going fine. Weight and O2 stats have stayed perfect.
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3/13/2004
On the evening of March 12th, things were as usual, Conner was not sick and he was doing well. He had been having some mild swelling but nothing major was going on. I decided to let Conner sleep with us, all four of us hadn't slept in the same bed in a very long time. For some reason I just thought we should. And so I brought him in our bed took off his clothes cause he loved to be in only a diaper and rubbed him down with lotion. I layed his little head on one of our pillows and he fell right to sleep. He had this almost angelic look to him, so I asked my husband to get the camera and took a bunch of pictures. We turned out the lights and we all fell asleep. Around 6 in the morning we awoke to the alarms on the pulse ox sounding. His o2 level was low, I gave him some extra o2 and this seemed to help for a minute but then his heart rate quickly started to plumit. I saw the stats on the machine and saw how low the heart rate was and just without any hesitation turned it off, and we all sat with him, not quite knowing , but then again down deep inside knowing that this was the end. I cant explain how we knew cause he was not struggling or ill at all. We held his hand and each one of us kissed his head and told him how much we loved him and how proud we were of him. Within a few minutes he was gone. peacefully flew away to become an angel.