Archive for July, 2006
July 31, 2006
July 31, 2006 | Updates
This past week was pretty slow. We had to reauthorize Samuel for more home therapy visits around his birthday on July 17th. The insurance company agreed to do home therapy through mid-September. By then, Samuel will be in preschool and our insurance has asked us to move to outpatient therapy at that time. I have come to find out that the reason our insurance company has been so willing to work with us and provide home therapy for so long is because they knew I was pregnant and felt the best thing for Samuel, me and the baby to be would be to keep him in home therapy until things had settled a bit. I must say, I’m VERY impressed!However, our occupational therapist has been out of town since then and will not start coming again until tomorrow. And apparently the place that supplies our therapies didn’t request continuation of speech therapy and didn’t tell me that for nearly 10 days. Our speech therapist also did not return my calls during that time. But once I found out, a quick call to our insurance company and our speech therapist was able to start coming again today.
We did have Samuel’s IEP meeting for preschool that will begin this fall. He will go to the same school that Ben and Wesley attend. And he will basically go 4 days a week for 2 1/2 hours each day. There is a special bus that will pick him up and bring him home. I will be going with him the first few days to make sure he tolerates it well. If he doesn’t, then I can drive him everyday or we can cut back the number of days he attends. So we will see.
He will get 1 hour of speech therapy and 20 minutes of physical therapy each day at school. The rest of the time, he will spend in class with the other children singing, learning ABC’s, counting, coloring, etc. They have assured me they will have enough aides in the classroom so that Samuel will pretty well have 1 on 1 time the entire time he is there. We will see if they live up to that or not. Other good news is that our physical therapist is trying to get in with the school so that he will be the physical therapist there also. That would be a good thing since Samuel really likes him.
Still no seizures! Knock on wood! And smiles galore! Samuel is getting more and more ticklish and will laugh a little when tickled. He is really working at using his legs. I just wish we could get his arms going too. His arms work great out to the side of him, but they don’t like to come midline (in front of him). So it is difficult to do many things we would like him to do. His head control is SLOWLY getting better. And he seems to be making more and more sounds with his voice. This week, we will reduce his baclofen again and schedule more HBOT in the coming weeks. It’s been nearly 2 months since our last sessions. Oh, and he is nearly totally off tranxene with hardly any upset over it. (That saves me one time of getting up during the night to give him his 6 am dose!)
Well, that’s about it for this week. You know the other day, I was having a crazy day filled with the 3 P’s (pee, poop & puke!) and as I was running around the house, I thought to myself “everything is honkey dorey”! Then I turned around and looked at Samuel and he gave me the biggest smile and I said to myself, “and THAT is why!” His smile has always made my day. I’m just so grateful to have so many of them each and every day!
God is good!
July 24, 2006
July 24, 2006 | Updates
Well, we have passed the 1-year mark and are still going strong :)! July 19th came and went and nothing bad happened. I don’t consider myself a superstitious person, but I couldn’t help but worry that something bad might happen on that day again. Thankfully, it didn’t. (Silly me for worrying!) In fact, things were so busy that I actually asked someone what the date was at about 4 in the afternoon. I knew the date as soon as I asked, but it was a good sign that I wasn’t dwelling on it all day long. I did have a nice cry later that night when things were quiet and calm. Not necessarily a sad cry, but more of a release cry - a way to let out all that I’ve held in the past year. And it felt good.This past week has been good. Samuel got a beanbag for his birthday and today he finally sat in it and watched an entire movie (The Incredibles). He even fell asleep at the end. It seems to support him really well and should be a comfy new place for him to hang out. He also started purposely trying to move his hands when we sing “Twinkle Twinkle Little Star” or “Popcorn Popping”. It is so cute because he watches his hand move like mine and then I tell him what a good job he is doing and he gets the proudest smile on his face!
I have not seen any more seizures although I have walked in on Samuel a few times early in the morning and seen his arms twitching. But it only lasts a few seconds. So I am not totally ruling the seizures out. But as always, it seems they are changing. And I just hope they eventually go away.
Samuel started napping this week. AMAZING! It seems his myoclonus has lessened and he is able to fall asleep more easily. So he is taking about a 90 minute nap each day (as long as we keep things nice and quiet!)
Samuel is spitting up quite a bit and has been for a while. So I put him back on Prevacid to see if it made a difference, but it hasn’t. I have tried feeding him slower, feeding him less, taking his supplements out of his diet and everything else I can think of. Today, I fed him while he sat in his beanbag and although he did spit up a bit, it wasn’t much. So maybe I will try that now that he has a comfortable place to sit.
And the only other bad news is he is rubbing a bald spot on the back of his head from all his wiggling on the floor. One therapist suggested that many children they work with have buzzes because of that. But I am not about to buzz off that beautiful hair. So if you see him, just ignore the bald spot and be glad he has the curls!
That’s it for this week. I am going to continue this post below, but it will just be my own ramblings :)! So you can skip it if you don’t have time.
As the 1-year anniversary of Samuel’s accident came and went, I thought a lot about what to post on the site. From the very beginning, we have felt that Samuel will get better and have done all that we can to help him in that endeavor. As part of that, I have done a lot of research on near-drown children and found many sites and much information about such kids. One thing that I have noticed is that ALL of their parents are waiting and hoping for and expecting a miracle for their children. Just like we are. And although these people may not have the gospel or the priesthood in their lives, they are good, good people and I believe that God is looking out for their children just as He is looking out for Samuel. But many of these parents are years and years out from the accident and yet they continue to end their posts with “still waiting for our miracle.” That really bothered me for a long time. Why did I expect to receive a miracle when these parents had already waited so long for theirs? Why did I deserve a miracle more than they did? Were we all having faith in something that wouldn’t occur? Were we all expecting something that was impossible? Was God giving us a sense of false hope? My answer: NO! Absolutely not!If I were to end my post with the same phrase each time or if I were to title our story, I would not title it “still waiting for our miracle.” I would title it, “in the midst of a miracle.” You see, Christ healed the deaf, the blind, the lame and many others. And Samuel was basically blind after his accident. But now he can see. He was basically deaf, but now he can hear. He was absolutely unaware and suffering every moment of his life. But now he is so aware of us and understanding all that we say and he is HAPPY!
Seeing those things, how could I ever say I was waiting for our miracle?!! We’ve already witnessed many, many miracles with Samuel. Just the fact that he’s alive is a miracle. And I still, most definitely, believe he will get better – much, much better. But we are not waiting for the miracle to occur. WE ARE IN THE MIDST OF IT!
So how far have we come in the last year? Here’s just a few examples: Samuel was not supposed to live through the first night and if, by some small chance he did, he would be a vegetable. A year later, he smiles at us literally everytime we smile at him.Samuel postured to the point that his heart rate was 200 beats per minute and he was breathing 90 times a minute. Two of us didn’t have enough strength to bend his arms or his legs. He would posture for up to 18 hours at a time and only stop when he was given significant doses of drugs. A year later, he only postures when he is mad at something and then only for a few moments. It seems to be an intentional thing now (an attempt to move) and not an involuntary one like it once was.Samuel did not seem to see us and would not track things with his eyes at all. A year later, his sight seems perfectly normal and he tracks things wonderfully. In fact, if you “fly” a toy across his line of sight, he will follow it in the direction it was going even if he can no longer see it.
There was not indication that Samuel could hear us. A year later, his hearing has been tested and is normal. (And we have to be very quiet when he is sleeping!)
Samuel could only sleep when given huge doses of medication (not even morphine was enough). His brain literally would not allow him to rest. A year later, he sleeps though the night (and takes naps) maybe waking once or twice for a minute or two, but otherwise, he peacefully sleeps without any medication.
Samuel lost range of motion in both of his arms, his left shoulder, both his ankles, showed signs of possible scoliosis and clenched his hands tightly closed at all times requiring him to wear arm braces, ankle braces, a back brace and rolled washcloths in his hands to bed each night. A year later, Samuel has regained the range in all his joints by his own movements when he is awake. He is constantly moving and wiggling and keeping everything limber. His braces sit in his closet getting dusty!
Samuel had myoclonus and strange seizure like episodes, which eventually turned into seizures. A year later, I have not seen any seizures for about 3 weeks and his myoclonus seems to be lessening.
Samuel smiled the first few days after his accident and then the smiles disappeared. A year later, Samuel smiles everytime we smile at him. And he is even starting to smile at extended family members and even strangers.
Samuel lost a considerable amount of weight from the posturing and came home weighing just 20 lbs or so. A year later, he is a whopping 28 lbs. (just kidding about the whopping part). We would be happier at 30 lbs, but we’re at least well on our way. Samuel had little to no feeling in his body. He did not react to getting IV’s or having blood drawn. A year later, he is beginning to be ticklish. Yea! If you tickle him just right, he will laugh. And what a glorious sound that is.Samuel bit his tongue, his cheeks and ground his teeth. He literally had pieces missing from his tongue. A year later, those missing pieces have grown back and he no longer bites himself and he only grinds his teeth when he is mad at something.Samuel could not swallow and drooled to the point that his drool cloths weighed more than his diapers. A year later, we only carry the burp clothes with us because he spits up sometimes. But he can swallow and does so many, many times a day as we try to feed him. (If only we could get him to accept things in his mouth better.)Samuel did not move his head on his own at all and very rarely did he move his extremities. A year later, he turns his head all the time including turning to sounds or to someone calling his name. And his arms and legs are always going!
We saw no purposeful movement from Samuel. A year later, he will play games with us like pushing a ball or a truck with his hand or pushing a switch or button to make a toy go. He is also learning to “push” mommy over with his feet and he definitely does so when asked.
Samuel made no sounds with his voice. A year later, he is making noise. And although I don’t know what he is saying, I hear different sounds each and everyday and feel that someday he will make those sounds into words to communicate with us.
Samuel came home on a ton of medications. A year later, he takes a vitamin, a suppository and a seizure med each day. I have had him on Prevacid this past week to see if it would help him spit up less, but I see no change, so I will probably take him off it. And he is down to one quarter of a Tranxene pill at bedtime. But I will probably take that away in a few weeks. His baclofen pump which was once up to 1500 micrograms a day is now down to 925 micrograms a day and we will continue to reduce that until we feel it necessary to stop.
On top of these things, Samuel is rolling over constantly. He is pulling his legs under him when on his stomach. He can lift the entire upper half of his body off the floor when on his side for many seconds at a time. He is attempting to take steps when we hold him in a standing position. And although he does not have great head control, it is getting better and he is working hard at it.
Things we are hoping for in the next short while:
That Samuel will…
learn to hold his head up on his own.
learn to eat by mouth.
be able to communicate with us.
be mobile in some way (by walking, crawling, operating a power chair, etc).
be free from seizures.
I can honestly say that this year has been the craziest thing ever. I never expected it and I hope to never do it again. If I could go back, I would save Samuel from falling in the canal. But at the same time, I can appreciate all that his accident has taught us. I am changed in a lot of ways and for the better.
I watched the end of the “Miss Universe” pagent tonight and one of the questions asked was “What is your biggest fear?” For the first time in my life, I didn’t know the answer because the meaning of fear is changed for me. I certainly don’t want to experience difficult things in my life. But I know that whatever happens, I can get through it. And in the end, I will most likely be better because of it. I learned that from Samuel. So I guess my biggest fear is that God thinks I have a lot left to learn :)! Let’s hope not!
What have you learned from Samuel? We would love to know!
July 18, 2006
July 18, 2006 | Updates
Things are pretty busy around our house, so I won’t be able to post as much as I would like tonight. But I had to take a moment and let everyone know that Samuel is still doing well. His birthday was yesterday and he turned 3 years old. It is so strange because it seems like the last year has gone so quickly. But at the same time, I remember those first few months thinking I could never make it a year from the day of his accident. I especially remember the two months in the hospital dragging on forever and ever. It seemed impossible to live with what had happened, but we are. And it is OK. That amazes me.We held a little party for Samuel last night. He got some toys, movies, books on CD, shoes, a lifejacket (so we can see if he enjoys going to the pool), a beanbag and some other little gifts. We also moved a larger TV into his room since the one he’s been watching in there is a portable 4″ screen. That should make it easier for him to enjoy his movies.
Samuel enjoyed the party part of the time. He was a little crabby all day, so it wasn’t quite what I had hoped. But he loved his balloons and enjoyed watching Ben play with them. He also smiled a little as we sang to him and he had a little bit of the strawberry filling in his cake. He seemed interested as we opened his presents and paid quite a bit of attention. Last year, he opened one gift that was filled with clothes. He took one look, said “Nice!” like he really liked them and then threw them behind him and went for the next gift. So this year, as we opened his present with his shoes in it, I said “Nice!” for him and he smiled. Maybe coincidence, but I like to think not.
Tomorrow is the anniversary of his accident. It’s been 1 year since our lives changed so drastically. And what a year it has been. I have thought about it so much and want to write more, but simply don’t have the time tonight. So I will post more later. In my heart, I am so happy to have Samuel here with us. He is the greatest joy and the sweetest little boy. I worry that I spend too much time on him, but the other boys are never jealous because they feel the same way I do about him. He is absolutely wonderful. But another part of my heart still aches for the little boy that was taken that day. I know he is still in there, but I miss him. I miss his voice. I miss his cute thoughts. I miss his walk and his run. I miss his laugh. I miss his messes. And I miss his kisses. I have let myself forget him somewhat because it is too painful to hold on. But I will never forget him entirely. And I so await the day that I will have him back - whether in this life or the next.
We love you Samuel! What a sacrifice you have made to teach us greater love and so many other lessons this past year. We hope this next year will bring many improvements and so much progression. But most of all, we wish for you to be happy. Because, really, that is all that matters to us.
July 9, 2006
July 9, 2006 | Updates
Some weeks, I feel like I don’t know what I’ll write when I update and others, I can barely wait to post. This week is one of those weeks where I can barely wait and I hope I don’t leave anything out!Samuel has been so smiley the past week. Ben kept saying over and over again that all he had to do was look at Samuel and smile and Samuel would smile back. Then it started happening with me and Tom and all the other boys. Now all you have to do is walk in the room or call his name or play with him or pick him up and you get a smile. It is SO AWESOME! And we have been able to make him laugh probably 10 different times this week. If I could wish for something, it would be that that never changes. No matter how hard things are, we can get through them as long as we have that beautiful smile!
This week was a busy one. Samuel was fitted for a different neck brace since the one we originally bought just wouldn’t do the job. The problem is that Samuel does not hold his head still at all. And with all his moving and wiggling, the original neck brace couldn’t hold him and would end up choking him. This new brace is actually a full trunk and neck brace. It will be used while he is in his walker and possibly in his crawler. We won’t use it too often, however, because if we did, it would eventually cause him problems with his jaw from too much pressure on it over extended periods of time.
I didn’t mention before, but I asked for an aid for Samuel while he goes to preschool. The school, of course, doesn’t want to provide Samuel his own aid and said that they would just ensure there were enough aids in the classroom to deal with Samuel and the other children. I told them I was mostly concerned because of his lack of head control, his feeding tube and his inability to communicate if something is wrong. Their suggestion was that he could just “wear his neck brace everyday to school.” Yea, right! First of all, he will have to be watched more closely with the neck brace on because it can choke him if he wiggles out of it and second, it will cause jaw problems if he wears it too often and third, why are we even considering making him uncomfortable the entire time he’s at school just so it will be easier and less expensive for the school (i.e. government). Well, enough said. I’m afraid it will be a bit of a fight to get what we want, but we’re getting used to that :).
I took all the boys to the dentist this week. No cavities for anyone! And Samuel actually let the dentist clean his teeth. He cried a little, but he let him clean them. That was a miracle in itself. And I was so worried he had done a lot of damage to his teeth from all the grinding. But strangely enough, Ben’s teeth are much flatter than Samuel’s! (What?) Apparently, Ben grinds his teeth much more than Samuel does and I had no idea he did at all! So the dentist said that Samuel’s teeth look good just like the other boys. Yea!
We also let Samuel try out a motorized wheel chair this week. They are going to bring it to our house this coming week. They will fit it with a switch that he just has to push to make it go forward. It will be interesting to see how he does with it. I think he will really enjoy it. But regardless, it is much more comfortable for him than the wheelchair the hospital originally loaned us. We don’t even use that wheelchair because Samuel constantly picks his head up off the headrest and drops it back behind it. And he is constantly pushing against the footrests and I’m afraid he will hurt his feet. So a new comfy wheelchair he can chase his brothers with should be fun!
What else? Well, each and every one of Samuel’s therapists said this past week that they have seen a dramatic change in him. He is smiling more. He is trying more. And he is progressing more. He is really, really trying to crawl. He is really, really trying to hold up his head. He is making more sound with his voice.
And he is starting to push through his legs when standing up. The other day, I held him up like you would a toddler trying to learn to walk. I’ve done that many times before, and he would just arch his back and posture. But that day, he stood there (obviously with lots of support). So I bumped the back of his foot and he took a step. Then I bumped the back of his other foot and he took another step. We went halfway across the patio and then he did it again later and another day also. It wasn’t “pretty”, but he was trying to walk. Amazing. What else? No seizures. I did not see one seizure this week. You know, I might wish for those to never return as much as I’d wish for the smiles to never disappear. It’s a toss up :)! And he is getting better at eating. Not major strides, but little ones. He watches us eat like a hawk. So I ask him if he wants some, and he will smile. Then I say, “My turn,” and I take a bite and show him how much I’m enjoying it. Then I say, “Your turn,” and give him a very small bite. And amazingly enough, he tolerates it. And he’ll tolerate 4 or 5 small bites in a row before he gets upset. Those are huge strides for him!Both Samuel & Nathan are still sleeping well. Nathan wakes Samuel up during the night sometimes, but Samuel will just sit and chat with himself until he falls back to sleep. The other day, Samuel was laying in his bed, looking in the mirror, talking to himself and smiling at himself. Pretty cute! And I also saw Samuel this week watching his hand move just like a new baby discovering their hand for the first time. It was pretty interesting.
Quick update on Nathan. Anyone who ever worried he wouldn’t be able to eat enough was crazy. The kid is always hungry. He now weighs 6 lbs 6 oz (up 6 oz from last week). He does spit up more than he used to, but maybe his eyes are just bigger than his stomach :)! He has peed and pooped on me this week. I have officially declared myself as in the “P zone”. If I’m not being peed on or pooped on, I’m being puked on! Between Nathan and Samuel, that’s my life and I actually love it. (Pretty scary, huh?)
Samuel loves Nathan and watches him closely. He loves it when you put Nathan right up against his face. I tell Samuel he’s “holding” Nathan when I do that and Samuel seems to really enjoy it. And I have a little sleeping buddy at least part of every night because Nathan gets lonely sometimes, I guess :).
Sorry this update was so long. There was just so much to tell. Keep praying! We are seeing so much progress, pray it continues. And especially pray that Samuel will learn to crawl soon. How wonderful it would be if he could just be mobile somehow.
P.S. Don’t miss the new pics full of smiles!
July 2, 2006
July 2, 2006 | Updates
I’m so sorry for missing last week’s update. Things have been a little crazy. I did start an update one night, but I don’t even remember now what pulled me away and by the time I got back to it, I had been logged out and the update lost, so I just went to bed :).I’ll start with Nathan. We brought him home on Father’s Day with his feeding tube and were instructed to feed him 55 cc’s every 3 hours. Sunday night, we used the tube a few times and then again during Monday and Monday night. But by Tuesday, we realized that if we just took sufficient time with Nathan, we could get him to eat the entire amount of each feeding by mouth. So we stopped using the feeding tube. Thursday, we went to the doctor’s and Nathan weighed 5 lbs 11 oz (up 3 oz from just 4 days before). So I pulled the feeding tube out of his nose right there in the doctor’s office and we haven’t looked back!
We are now off our feeding schedule of every 3 hours and I just feed Nathan when he cries. He seems to have a great appetite and eats often during the day. He eats less often at night, but no complaints about that! This Thursday, we returned to the doctor’s office and Nathan weighed 6 lbs (up 5 oz from a week before). He also was circumcised and has been a little sore from that. But besides a little lingering infection or possibly clogged tear duct in his left eye, he seems perfectly healthy and growing well. We’ll go back to the doctor this week to have his circumcision checked and his weight taken again and if all looks well, we should just be able to get on a regular checkup schedule. So all is good there!
Samuel is also doing well. I have had several people comment that he seems to have gained some weight. His cheeks, arms and legs are filling in since I raised the calories in his diet and he’s already gained a few pounds. He has also had much more energy with the extra calories in his diet. That’s been a good thing. He is rolling all around the house and really trying to figure out how to get up on his hands and knees. I’m sure it is so frustrating for him, but he just does not give up. He’s a fighter!
This past week, we went down to Primary Children’s to have Samuel’s pump filled. It was just me and the 4 younger boys since Tanner was busy at EFY and Tom was working. The trip was a little crazy because we only made it about 15 minutes from the house when Samuel had a seizure and threw up in the car. So we had to clean all that up and change him before we could venture on. There were also several stops to feed and change Nathan. And at one of those stops, the suburban nearly overheated for some strange reason, which caused us to have to sit and wait for it to cool off for about 45 minutes. But otherwise, the trip went fine. Samuel wasn’t real happy in the car, but I’m sure that’s because the entire trip took about 6 hours to complete.
His pump refill went well and we reduced his doseage by 75 micrograms this time putting him at 925 micrograms per day. In the days following that reduction, we saw improvement in his ability to hold up his head and an increase in him trying to push up off the floor with his arms. In fact, a few days ago, I went outside to take out the garbage and when I came back in, Samuel was on his stomach with his arms underneath him pushing against the floor and holding up his head to look at me. To say the least, I was excited!
We also ventured to Kohl’s this week for a little clothes shopping since Samuel didn’t really own 1 short sleeved shirt. I didn’t buy him any shorts, however, because I’m certain he would just rug burn his knees in them since he already gets rug burns on his little cheeks from working to move around on his stomach all day long. And we also ventured out to dinner at Bluebird this week. That was quite the scene with our tiny Nathan and our wiggly Samuel :). I’m sure people thought we had lost our minds.
At one point, Samuel let out quite the upset scream and it took a bit to calm him down. Then a minute later, Nathan started screaming at the top of his lungs (sore from the circumcision) and it took even longer to quiet him down. So I don’t know how much everyone around us enjoyed their dinner. But I bet it’s been over a year since I got to eat at Bluebird, so I certainly enjoyed mine! Another thing we accomplished this past week was visiting the preschool that he will attend this next school year. He is scheduled to go a few hours each day and 4 days a week. The class we visited had 6 children, a teacher and 2 aides. Several of the children had Down Syndrome and the others had different types of developmental delays. One Downs boy was absolutely wonderful with Samuel because he was so interested in Samuel and so friendly towards him. And Samuel seemed very interested in what everyone was doing and especially enjoyed when they had singing time. It will be interesting to see how well he handles going everyday and how much he is able to learn from it. It will definitely be a stretch for his mother to let him go, too!Samuel was really smiley today and we have been able to take him up the canyon the past few days to enjoy a bit of camping. He seems to get frustrated sitting in the camper because he can’t move and wiggle around much. But he is usually happy if we sit outside with him. And today, he was even able to take a quick ride with his dad on the 4-wheeler. It was fun, too, to see him with Byron’s kids who have camped with us over the 4th of July weekend for the past 3 years now. I think he remembered them and was excited to see them again.
And the last bit of good news, Samuel’s seizures have been occuring much less this past week. Let’s hope and pray that trend continues. I haven’t even seen him have one for about 3 days now. Yea!
Before I close tonight, I need to thank everyone who has helped over the past month and over the past year. Thank you to everyone who has helped in anyway – from parents to grandparents to siblings to cousins, aunts, uncles, friends, ward members, employees and even strangers. Thanks to those of you who have brought gifts, dinner, goodies and well wishes. Thanks to those of you who have called, emailed, sent letters and cards or left messages on the care pages. If I had the time, I could spend an hour everyday writing thank you letters to all those who have helped us this past month and year. That is one thing about this experience is we have had our faith in the goodness in this world renewed and strengthened. You are all so wonderful. And mostly, I want to thank you all for your prayers. They mean the most to us and make everyday a good day – even the difficult ones.
Thanks again. Keep praying. We’re doing well.
P.S. Just 15 days until our little Samuel turns 3 years old!