CONNOR'S CAREPAGE

This is a copy of things Shannon wrote on Carepages.

Intro

Hi, my name is Connor. I was born on September 24th 2006 from Shannon and Chris (my Mommy and Daddy). I have a very rare disability known as Marshall Smith Syndrome, I am only the 34th person in the whole world who has been diagnosed with this. I have a trach and a g-j tube. You may call me imperfect, but I am a very special boy! I love to sing songs with my Mommy and Daddy. I am happy most of the time, and I just recently started playing with toys! I am an awesome baby if you take the time to get to know me. Have the ability to look past my disability!

Jan 19, 2008 10:02pm

My son was born by emergency cesarean section 9/24/06. We had no idea that anything was going to be wrong with him. At birth he was 6 pounds 1 ounce, and looked very unhealthy. Children’s Hospital was there within 2 hours and he was taken to the Neonatal ICU where he stayed for a month. He had a tracheotomy and a g-tube placed October 6th, 2006. He was diagnosed with Marshall Smith Syndrome when he was about 3 weeks old. He is only the 34th case in the world. There is no known gene or cause. He was able to be diagnosed because of his different features, advanced bone age (at 2 weeks old he had the bone age of an 18 month old), and his blue sclera. The doctors tell me that the life expectancy for someone with this syndrome is not long (the majority of the other children passed away by 7 or younger). I hope that Connor will prove the doctors to be wrong. He is an amazing child. Connor is happy so much in spite of all the time that he spends at the hospital, and how sick he is. He is me and my husband’s life!

Jan 26, 2008 3:52pm

Connor had an appointment with craniofacial last week. The team noticed that Connor’s eyes are more protrusive now than they were 3 months ago (the last time that they saw him). When he cries his left eye bulges out so far that we have to try to shut his eye fast so that the eye does not come out of his socket. The doctors actually had to train us how to put his eye back in just in case it does come out. Connor is going to have to have a surgery where the craniofacial doctors bring the bone in his forehead forward so he has coverage over his eyes (so that he can hopefully shut them). Basically, since the top of Connor’s forehead protrudes and then goes inward, they are going to bring his brow area forward and make his forehead straight down like it should be. I am nervous about it because the surgeons said that he will lose half of his blood during the procedure. Also, this kind of surgery has never been done on someone with Marshall Smith before, so they are not sure how the bone will heal (since his bones are so advanced, they are more fragile). The doctors are waiting for him to gain some more weight (he has always had trouble gaining. He is not even in the 3rd percentile) and be completely healthy. Today Connor has a fever of 104 and his heart rate is 200 and above. We are trying to lower his fever, he has had Tylenol, motrin, and a cool bath. So far it is not working, but his doctors want to give it some more time in hopes that he gets better. They like to avoid the emergency room as much as possible so that he does not catch anything there.

Jan 29, 2008 12:16pm

Connor’s fever has come down. yesterday it was 101, still high but much lower than 104! His heart rate has also gone down. He seems to have much more energy now than he did the other day. Also, since he has gained weight, he is much stronger. He is finally playing with toys, and lifting his arms. Connor still cannot hold toys very well, or operate them. However, he reaches for them, and tries to push then buttons, which is a huge improvement from a couple of months ago! Never take the little things for granted. i know that a parent who sees their 4 month old baby holding his/her head up doesn’t think much of it (after all, at that age a child should be able to do that). Still, appreciate that your child can do that. Connor can not do things like hold his head up, bear weight on this legs, or sit up, but we are happy with the little milestones he does reach!

Feb 6, 2008 6:09pm

Well, Connor was running a high fever again yesterday. I brought him to the CHB emergency room where they did many tests to find out what is going on. They found out that he has pneumonia. He is on antibiotics for a week and then will have another chest x-ray to make sure that it is all gone. I hate the word “pneumonia”, considering that in everything I have read about Connor’s syndrome it is the leading cause of death. This is the second time that he has had it. So that shows me that he can fight it off! My baby boy is a fighter! On a happy note, Connor is finally 20 pounds :)

Feb 24, 2008 3:10pm

Well since my last post Connor still has some pneumonia. Also, the other day he was crying and his eye started protruding more like it does when he cries…except this time it stayed out more than usual. His eyes never shut all the way, but they usually shut a little…but this time his left eye stayed completely open. Unfortunately there was nothing that we could do for him, so we rocked him to sleep and laid him in his crib. Because his eye was protruding so far, he ended getting a bad corneal abrasion which is now infected. the swelling has gone down, so the protrusion is back to normal, now it is just very red and irritating him. For an update on the cranial facial surgery that he is supposed to have, it now has to be put off. Connor has something called clonus which is competitive rhythmic contraction of a muscle when pressure is put on it. Basically when I put pressure on the bottom of Connor’s feet, they will shake up and down. He has always had clonus, but it has recently gotten worse. At Connor’s last orthopedics appointment i pointed it out to his doctor, and she had me bring him to get some x-rays done of his spine. Connor cannot support his trunk, or hold his head up which can cause pinching at the top of the spine. If this is the case it will require Connor to have a serious surgery where he will have to have a vertebrae removed, or fused together to fix the problem. The x-ray did not show pinching of the spinal cord, but he is going to have an mri in a couple of weeks to be sure (an mri will give a better picture of the spine). If this does not come back normal then Connor will have to have the spinal surgery before the cranial facial surgery because during the cranial facial surgery the doctors will have to move his head around a lot, and if he has pinching in the spine this could hurt him very much. If the mri comes back normal then Connor’s worsened clonus is a neurological problem. That means that he will be able to have the other surgery (which I am so scared of, but there is no other choice…we have to protect his eyes). The x-ray also showed that Connor’s spine is curved. He is going to be fitted for a brace to hopefully correct it. Chris and I have obviously been very busy with our boy lately! He likes to keep us on our feet. He has also pulled his feeding tube out twice in the past couple of weeks, which means that we had to go to the hospital yet again to have interventional radiology replace the tube. Like I said, connor likes to keep us busy!

Feb 26, 2008 5:24pm

Connor was in the emergency room last night because of his corneal abrasion and a high fever (104). As far as his eye goes, because it protrudes so much, it is rubbing on things (such as the carpet, and his car seat) which is preventing it from healing. His ophthalmologist is now considering sewing Connor’s eye shut to give it some time to heal. It sounds like some sort of midevil torture, but whatever it takes to protect his eyes. We then found out that is fever is because he has a new pneumonia. They sent him home with antibiotics, tobi nebulizer treatments, and a new ointment for his eye. This morning Connor’s fever was up to 105.1, I have been alternating tylenol and motrin all day but the lowest it has gotten is 103.7. Chris and I are taking him to the emergency room again tonight because that is just too long to have such a high fever. This means that Connor will be getting admitted again for a bit. Wish us luck…and pray for my baby boy. I hate to see him suffer, he does not deserve all that he goes through. He is such a little angel!!

Feb 28, 2008 9:38pm

Connor went to see his pulmonary doctor today because his fever is still high, and his O2 sats were in the low 90s. They did an x-ray, and the pneumonia is getting better. As far as the fevers go, they said to just keep giving him tylenol. He is now on two inhalers to help his lungs open up so his sats go up. He is also on tobi nebulizers which is an antiobiotic that goes to his lungs to treat the pneumonia. Hopefully it will work soon so chris and i will see him smile again.

Mar 7, 2008 6:05pm

Connor’s corneal abrasion has not gotten any better. He is going to have the tarsorrophy (sewing the eyes) on Tuesday the 11th. They are going to do both of his eyes even though the left eye is worse. His orbits are too shallow for his eyes, so they are getting much worse. This surgery is going to be temporary until his craniofacial surgery can be done. However, the craniofacial surgery is most likely going to be done sooner than later. The doctors do not think that the tarsorrophy is going to hold very long. If the tarsorrophy is unsuccessful then he will be getting the major surgery within the next month. I am very nervous about both of his surgeries. I am nervous about how much pain he will be in, how successful it will be, and what he will look like after his surgery on Tuesday. As far as the craniofacial surgery goes, the thing that I am most concerned about is Connor making it through the surgery. The major surgery (craniofacial) will last about 4 hours, and is only done about 10 times a year. Connor is a strong boy though, and he has fought through a lot, so Chris and I are hopeful. Connor is such a little angel, and that tiny little boy is my hero. On a happier note, Connor is now in the 10th percentile for his weight and for his height!!!! My boy’s body is in proportion!

Mar 17, 2008 10:55am

Connor’s surgery went as well as can be expected. The surgeons had to close his left eye a lot more than his right, being that the left eye was the one with the corneal abrasion. They stitched the inside and outside corner of each eye. His left eye is shut for the most part, you can see his pupil a tiny bit. His right eye was shut so that none of the whites of his eyes were visible. However, the inside corner stitch on his right eye pulled and came undone the other day. So his craniofacial doctor said that if another stitch comes out he will have to do the other surgery. I don’t know how to feel about it…I am nervous (very very nervous), but at the same time anxious to see how his eyes will come out after the surgery, and how well he will heal. I trust the craniofacial team very much.

Mar 26, 2008 7:49am

Well Connor’s tarsorrophy on this right eye completely failed on Saturday. All of his stitches in that eye are now out. His left eye has started to scar together like it is supposed to. I am not sure when his craniofacial surgery is going to take place. He has his head CT and spine MRI on April 8th, and he sees the craniofacial team on April 11th, so we may find out then. Connor has not kept up with the weight gain…he has not lost any weight, but his curve has slowed down. As long as he is gaining I am happy! I just want him to be nice and stromg for this surgery. He has been cranky for the past couple of days…other than that…he has still been my happy boy! ******** On March 20th we are going to be having a Benefit for him at St. John’s in Pocasset. It is to raise some money for things that he needs that Mass Health will not cover. Hopefully we will also be able to get a van with some of the money, since Connor needs a wheel chair. There is going to be lots of kid friendly things! Face painters, food, hopefully pony’s and a moon bounce!!! Anyone is welcome!

Mar 26, 2008 8:00am

OK…there is not going to be a pony at the benefit…we are still hoping to get the moon bounce, there is going to be a DJ and raffles though! It will be lots of fun!

Mar 26, 2008 8:52am

Connor’s benefit is April 20th not March 20th.

Mar 31, 2008 7:30pm

Connor has not been tracking anything with his eyes for a few days now. It may have something to do with the seizure that he possibly had last Wednesday. I am still waiting for the results of his EEG he had last Thursday. I brought Connor to Children’s today to have his eyes examined. They said that his eyes look good, and his optic nerve looks good as well, which leads them to believe that Connor is not blind, but it is more likely a neurological problem. Maybe from the possible seizure, or something else. I am going to call his neurologist tomorrow to schedule an appointment. I hope that he is not losing his vision. He can already not walk, talk, hear very well, I cannot deal with him losing his sight as well. It will not be fair for Connor.

Apr 4, 2008 1:34pm

Connor’s EEG came back normal, however, I know that children can have normal EEG’s and still have seizure activity. Connor was actually admitted to the hospital on Tuesday night. Tuesday morning he woke up very fussy and had a fever of 104.7. I gave him motrin and tylenol throughout the day and I could not get it below 102. I brought him to the ER around 9pm, and he was admitted. He had a tiny bit of pneumonia. He had a blood culture come back Wednesday with some sort of infection, so they have him on a very strong IV antibiotic. They are doing cultures everyday to make sure that the infection is gone. We are looking at staying here through the weekend. He slept all day Wednesday, and most of the day Thursday, happily, Connor became a little more alert last night around 4pm! The antibiotic is starting to kick in and he is feeling a bit more like himself! He is tarcking a little more now, but he is still not back to his baseline. He is being such a little fighter though!

Apr 8, 2008 1:22pm

Well the hits just keep coming. We are going to be here for about another week. Connor had a PICC line placed yesterday…it may not last long though. They line starts at his foot and only goes to the top of his thigh. PICC stands for peripherally inserted central catheter, which means that it is supposed to go towards the center of the chest. He has such little veins that they had to use the smallest catheter that they had…and it was too short to make it all the way up. I hope that it will last the week that it needs to, because he was going through IV’s like crazy. I am also arguing with the doctors about drawing Connor’s blood every day. They have to check his vancomycin levels (the medicine that he is on to treat the infection) and because he is such a hard stick I want the IV team to do it every time. They always send up phlebotomy though…and they have to stick him a few times…which makes me very sad and angry…so today I told them that if they want to check his levels that I will only let the IV team draw (nothing but the best for my boy). I also found out that Connor is most definitely going to have to have his tonsils and adenoids removed. Apparently when the doctors saw his Head CT they noticed that his tonsils are very large. Since they are so large, when his trach comes out (Connor has pulled it out a couple of times) he cannot breathe at all. We do not want to risk going to Connor crib one morning and see that he is not breathing. They are going to do a bronch first, and if they see that the tonsils are too big (which they already know they are) they are going to go ahead and remove them. This is going to happen in about a month. Connor cannot just get a break.

Apr 13, 2008 11:33am

We had an appointment with cranial facial on Friday. I felt like I did the first time I met with them when Connor was is the NICU. I could not speak, because if I did then I would start crying…basically Dr. Mulliken said that he does not feel comfortable enough doing the surgery on Connor. 1. he does not know how Connor’s bones will heal (since Connor has the advanced bone age and fragile bones, they may not heal together like they should) 2. they have never done a frontal orbital advancement (I think that is what it is called) just to give the eyes more space (usually it is done when children have a syndrome where the bones in the skull are fused together and they have to give the brain more room to grow) 3. it is an 8 hour surgery, this is risky on any child, but especially on Connor because he does not have the best lungs and he has a trach. 4. there is a complication involved where Connor could actually lose more blood than he has, and when they are doing the blood transfusion during the surgery it is obviously “used blood”, so it is thinner and does not clot as well…that could cause him to get a bleeding disorder. 5. they do not like to do surgeries when there is more than a 5% chance of complications, with Connor there is “at least a 10% chance”. There are many more reasons which I all understand, but I wish that they would have told us all of this 5 months ago. About 5 months or so ago they basically said, “this is what we will do…and this is what it will help…”. While Chris and I were rightfully nervous, we were also excited. Connor was going to finally be able to shut his eyes…and I would be able to bring him out on sunny days without him freaking out. Now because they are not going to do the surgery, and the right eye tarsorrophy has failed, the ophthalmologist’s are going to repeat the tarsorrophy on the right eye. The thing with that is Connor cannot see very well at all when his eyes are mostly shut. The doctors say that if you can see a pupil, then you can see. Connor is unique though, and when he had the tarsorrophy before he was not tracking or focusing very well. In order to track effectively when you have a tarsorrophy you have to be able to track with your head. When you try to track with your eyes you end up looking to the side and cannot see because your eye is shut on both sides. Connor cannot track with his head because he has VERY little head control. I worry that since Connor is so early in development, he will lose his vision because he will not be able to use it well. Then he will not be able to see, speak, walk…It makes me very sad to think about. However, I will take blind over passing away. The cranial facial team said that if this tarsorrophy fails again then we will have to do the surgery…which now that I know all of the risks, scares me very much. This has been a very crappy stay full of bad news. Also, Connor has been running a high fever on and off for about 6-7 months now…the doctors here said that they do not want to send Connor home until he goes 3 dys without a fever. I just laughed when they said that because it is not going to happen! He had a fever jut yesterday. They are going to get infectious disease to run a series of tests on Connor to finally get to the bottom of things though. So we may be here for the week again. Plus, we want Connor to get the tarsorrophy done this week if possible. I want everything done at once, so when it is done Connor can have a break for a bit.

Apr 17, 2008 8:49pm

Connor had surgery today…it was supposed to be at 3, however the OR was very busy, so it was at about 5. They did the repeat tarsorrophy on his right eye (that went well). They did a bronchoscopy…that showed some bad things. His tonsils are not large like they initially thought they were. The problem is that Connor’s mouth is so small (because of the recessed jaw) that his tongue is large for his mouth. The thing that they can do for that is to remove a part of his tongue to make it smaller. Also Connor has some granulation tissue that is just above his vocal cords, they cannot do anything about that now. He also has a cyst that is above his vocal cords, it is on the larger side, at some point they will have to remove the cyst. He also has something where his tracheal wall collapses causing an airway obstruction…this is not a problem now because he has the tracheotomy in place…but if he were able to get the jaw distraction (surgery to bring the jaw bone forward to create a larger airway) he would still have to keep the trach tube in because of this anatomy. He also had tubes put in his ears today, which went well. Basically Connor will always have to have the trach unless there is some kind of miracle…it was another bad news day. He is out of recovery, doing well and sleeping very soundly. When he does wake up he is a bit fussy from the discomfort…so we are trying to keep him asleep. Hopefully he will be able to go home in time for his benefit! Thank you for all of your prayers!

Apr 21, 2008 12:24pm

I wanted to thank everybody who was able to come to Connor’s benefit…and to everybody who gave donations to my little Connor! It was nice to see how many people love him. I am happy to inform you all that we raised a total of about $14,000. Also the Knights of Columbus are going to give us $5,000 to go towards a stroller and a tumble form chair for Connor…that means we will have enough for a nice van and a ramp! We would not have been able to get these things without all of you! Special thanks to my Mother who made all of this happen, my Father who cooked the delicious food, my siblings who got us some great raffle items, and anybody else who helped!

Apr 24, 2008 8:08am

We are back in the hospital again…Connor was admitted Tuesday night for having a very high fever again. His blood cultures have not grown anything yet…and he has not had a fever since yesterday afternoon…so maybe we will get to go home soon. Also, the stitches that are supposed to reinforce the tarsorrophy have already come out. It us still holding with the other stitches, hopefully it stays that way. Dr. Ledoux may try to place more stitches at his bedside today…only if he will not move…probably not going to happen. She is going to try with some adavan…she just not want to risk hitting his eye with the needle so we will see.

Apr 28, 2008 9:52am

We are home now…Connor got discharged to Friday. He had a fever of 104.4 yesterday…and it is still 104 today. I hope that we do not have to go back. I am trying to bring the fever down at home. I hope that it starts working soon. Other than that Connor has gotten way off track with playing with his toys. He was doing good for a bit, but since he has been so sick he has gotten weak…it will be a lot of work to get him back to where he used to be, but I will get him there!!!!

May 1, 2008 10:32am

This is Renee, Shannon’s sister-in-law. Shannon would like everyone to know that at 7:45AM on May 1, 2008, Baby Connor went to heaven to rest in Jesus Arms. Please keep their family in your thoughts and prayers. Notice will be posted once arrangements are made.

May 2, 2008 6:40pm

Visitation will be held from 3-5pm Sunday at Nickerson-Bourne Funeral Home, 40 MacArthur Blvd., Bourne. A Mass of Christian Burial will be celebrated at 1pm Monday at St. John the Evangelist Catholic Church, 841 Shore Rd., Pocasset. Burial will follow at Oakland Grove Cemetery in Bourne. In lieu of flowers, contributions are suggested to Children’s Hospital, 300 Longwood Ave., Boston, MA 02115. Connor’s family will be forever grateful for the support they have received and especially want to thank all who attended the “Baby Connor Benefit”. Connor taught all of us how to love more, smile more and appreciate life more in his short 19 months than most people are able to do in a lifetime. We love you, our little angel in heaven.

May 8, 2008 9:07am

Thank you all for the support the past week (a week exactly). Connor is such a perfect child…I will always miss him, and never forget him…how could I, he is a part of me. He has changed my life in so many ways, he makes me want to be a better person so that when it is my time I will be with him. I love you Connor, nobody loves you like me, and nobody ever will.

Jul 3, 2008 2:30pm

I really do not think that losing your child ever get any easier…we just learn better how to manage pain…and if not that, we can fake a amile like the best of them. I do find myself going a solid 15 minutes without thinking about Connor, not because I have forgotten him, just because I am busy. At those times, I feel bad for not thinking of him. I hope that he knows that no matter what I will always love him and I will NEVER forget about him. The past 2 months and 3 days a lot of nieve people have said to me “time heals everything…”, but they are very wrong. When you lose someone that you love (especially a child) they take a part of you with them…in my case Connor took a big chunk of my heart with him. I am glad that he did, with it he must know how much I love him. I will some day have more children, but I will still never forget Connor. He is my first born son and nobody can replace that.