| Wednesday, October 4, 2006, 9:00 A.M. Sorry again for the delay! We are moving Elijah's blog to another location for ease of use (and more pictures). Please bookmark this location: Elijah's Blog
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| Tuesday, May 30, 2006, 5:30 P.M. Sorry! Long overdue update. Click the e-mail link to let me know you are still checking us out. Elijah will have his second birthday on June 20! He is (hopefully) getting over his first bladder infection. A recent visit to the urologist was encouraging in that Elijah's bladder and kidneys appear healthy, but he convinced us that he should be on a bladder toning medicine indefinitely. We asked God for a bladder that would grow normally apart from medicine. He said, "No." We conclude, then, that this is the very best for Elijah. The little fellow is turning into quite an actor and comedian. His latest is to muster up a fake grimace when denied his heart's desires and say, "Ahhhh, Mom [or Dad], why no-o-o-t?" Please pray that we could soon find a set of therapeutic straps to get Elijah's feet straight so he can walk. Right now his feet are still both pointing to the right ("windswept"), which makes un-aided walking a physiological impossibility. Blessings, Steve Svendsen |
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| March 10, 2006, 10:00 A.M. Lots of water under the bridge (and trips to the Twin Cities) since the last update. Elijah now has no cast and wears an AFO (ankle-foot orthotic) on his left leg most of the time. Yesterday we were very pleased when the physical therapist brought Elijah a walker to use. It looks like one an elderly person would use, but in reverse. We were doubly pleased last night when he walked all the way across the room (slowly) aided only by his new walker. We will not call these his “first steps” yet, but considering the significant paralysis below his knees, we were cheering. One prayer request is that eventually Elijah will be able to graduate to crutches and even learn to walk without them. We know God often shows himself strong in our weakness, but we honor him when we confess his strength by praying. Please also pray for us as we are still wrestling over whether or not Elijah should be on bladder-toning medicine. Thank you for visiting. Blessings, Steven Svendsen |
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| March 10, 2006, 10:00 A.M. Lots of water under the bridge (and trips to the Twin Cities) since the last update. Elijah now has no cast and wears an AFO (ankle-foot orthotic) on his left leg most of the time. Yesterday we were very pleased when the physical therapist brought Elijah a walker to use. It looks like one an elderly person would use, but in reverse. We were doubly pleased last night when he walked all the way across the room (slowly) aided only by his new walker. We will not call these his “first steps” yet, but considering the significant paralysis below his knees, we were cheering. One prayer request is that eventually Elijah will be able to graduate to crutches and even learn to walk without them. We know God often shows himself strong in our weakness, but we honor him when we confess his strength by praying. Thank you for visiting. Blessings, Steven Svendsen |
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| Friday, January 6, 2006, 5:00 P.M. We got home from the Twin Cities at about 3:00 P.M. yesterday. Elijah slept the whole way. He was very tired during the casting because we could not get in until naptime and had to wake him from a sound sleep. Sarah and I had to do goofy things and entertain him with everything from Barney (gag) to books to animal sounds while the casting people put his toe-to-hip, glow-in-dark cast on. After all that partially successful stimulation, we returned to the room before discharge and he began playing with a SOCK. He continued to play with it as we drove away from the hospital. Minutes later Sarah looked in the back seat to see Elijah sleeping with the sock perched on his head! All concern about mobility quickly disappeared when he got home and was put on the floor. He even pulls himself up to furniture with his leg bent at 90 degrees. It looks like he will be able to get the cast taken off completely before all the February activity. Blessings, Steven Svendsen |
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| Wednesday, January 4, 2006, 4:25 P.M. Elijah is now reclining in a hospital bed, watching television, eating cantelope and undoubtedly pondering ways to rip the IV from his arm. He came through his surgery with gusto. Even though he was very tired (we had to wake him up early and left home at 4:39 A.M.--on slushy roads), he had enough energy to flirt with nurses before the surgery. He did not even act hungry. I was allowed into the operating room and held Elijah while the nurse anesthetist put him to sleep. We were told the actual procedure could take three hours, but the surgeon emerged early and told us he completed everything in an hour. Even through the heavily wrapped and splinted leg (casting is tomorrow), it is evident that Elijah's foot is now in its proper position. If all goes well we will go home tomorrow after the casting. Thank you for your interest in our little boy and for your specific praying. Blessings, Steven Svendsen |
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| Monday, January 2, 2006, 10:40 A.M. Elijah is scheduled for a “tibial de-rotation” this Wednesday, January 4 at 8:00 A.M. at Gillette Children’s Hospital in St. Paul. This lengthy surgery involves cutting through the larger leg bone just above the ankle and turning it into a position that is supposed to facilitate walking. His serial castings were of limited benefit because of the lack of nerve/tendon control in that lower leg. Elijah will have a healthy-sized cast for about five weeks. During that time, I will be away at a conference for a week and Elijah will travel with the family to a weekend marriage retreat at which I will be speaking. We have been very encouraged with Elijah’s physical and particularly his cognitive development. He loves to chatter and seems even more communicative than some of the other kids were at 18 months. Please pray for: 1. A healthy patient. 2. That Elijah’s hunger would be controlled through the time he may not eat before and after the surgery. 3. A skillful and gentle anesthetist (and a first-attempt IV set). 4. A skillful surgical procedure (Dr. Stephen England). 5. Parents who represent their Savior well in thought, word and deed. 6. No infections and a swift healing. Thank you for caring and calling on a God whose purposes will be accomplished through the prayers of his people. Blessings, Steve Svendsen. |
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| Monday, October 24, 5:30 P.M. Elijah had a scheduled appointment last week with his urologist after a couple of tests (renal ultrasound and cystometrogram for you medical people). Nothing at this point is wrong, except that Elijah’s bladder is (predictably, the doc says) too small for his age. The doctor prescribed a medicine that will presumably relax and tone the bladder so its capacity will increase. While we are not against medicine, we are hesitant to introduce a chemical he may have to take indefinitely. While there is no imminent danger, the doctor did warn us that the long term risks of a small bladder are more than social risks. I have read that, historically, spina bifida deaths are usually related to urological complications. We are praying for wisdom. Thank you for joining us. Blessings, Steven Svendsen |
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| Monday, October 3, 2005, 9:45 A.M. Elijah had an appointment with his orthopedic surgeon last week. Because Elijah’s foot is rotating inward again, the doctor is recommending a tibial de-rotation surgery ASAP to give him his best shot at walking. This surgery requires the larger leg bone to be cut just above the ankle, turned it into the desired position and clamped into place. It sounds horrid, but we know it will be best in the long run. We are debating whether to do the surgery before or after the first of the year. On the bright side, Elijah’s eyes seem to be holding in position so far. We will visit the ophthalmologist this Wednesday to get her opinion. Thank you for visiting, Steve Svendsen. |
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| Sunday, September 11, 2005, 8:40 P.M. Sorry for the lateness in this update. Thank you for your concerns and prayers for Elijah’s surgery on Thursday (9/8/05). God is always good, even when we do not get our way, but this time he apparently gave us what we asked for. We prayed about Elijah’s ability to go without eating during the morning hours before surgery. No problem. We prayed that the surgery would be on time. Ran like a good train. We prayed that his veins would not explode when the IV was placed. One stick in a foot with no feeling (hidden blessing). We prayed for a successful surgery. So far, so good. Elijah’s eyes appear to be tracking together and not crossing at all. We are told we will not know for sure how successful the surgery was for six weeks, but for now we’ll take what we have been given. Thank you, Lord. There will be a lot of doctoring (ophthalmologist, urologist, orthopedic surgeon) in the coming weeks, so stay tuned. Blessings, Steve Svendsen |
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| Monday, August 1, 9:00 A.M. We spent the last week at Camp Fairwood, where I was speaking. Sarah was in our cabin reading to one of the girls while Elijah played on the floor. Sarah looked down to find Elijah standing next to a coffee table! This is a major physical milestone because of the limited sensation below his knees. He was not even wearing his splints. We are thrilled at his cognitive progress as well. In the right mood, Elijah repeats any syllable you give him (in his own dialect). We are enjoying the sound of his voice repeating numbers as we count out Cheerios. Elijah will be having surgery on both eyes on September 8 to correct his strabismus (his eyes turn in). We understand that this surgery if often not successful in children with our son's neurological issues, but we agreed to go ahead after getting an identical second opinion from another opthalmologist. Please about this whole event and Elijah's swift recovery. Blessings, Steven Svendsen |
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| Monday, June 20, 2005, 5:00 P.M. Elijah is one year old today! What a blur. God has been gracious in adding this joy to our home. As I stated a year ago in the heat of Elijah’s hospitalization, no regrets at having lots of kids. We’ll take more if God gives them to us. Thank you for praying for Elijah’s appointments last week. I incorrectly stated that Elijah would have a CT. That is thankfully six months away. We got a “He looks fantastic” from the neurosurgeon, for which we were thankful. The orthopedic surgeon, however, looked at an x-ray and told us Elijah has hip dysplasia. This will likely require surgery in about a year. This little guy never lets us get bored. Blessings, Steve Svendsen |
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| Monday, June 6, 2005, 7:45 A.M. I wanted to get a message posted ahead of time so you know that Elijah has orthopedic and neurology appointments and a CT scan scheduled on Tuesday, June 14. These are just routine exams, but we always go into them knowing that CT’s and specialists see things we cannot. We will update the site when we know more. Please pray that Elijah will be as still as he was for the last CT. I think this one is at Children’s Hospital, where they are a little more understanding with active little boys. You might also pray that Elijah would learn to accomplish our next goal for him: to lift his feet to walk along furniture. Try walking on a foot that has “fallen asleep” and you might understand his hesitance. Blessings, Steve |
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| Thursday, May 5, 2005, 8:50 A.M. Elijah had his eye appointment yesterday in Forest Lake, Minnesota. His eyes have gotten worse since the last appointment. Instead of one “lazy” eye, both his eyes alternately wander in. This concerns us. The doctor said that Elijah’s situation is better than many because the brain can shut down on eye that is lazy. Her tests yesterday showed that Elijah uses both eyes alternately. On the harder side, she said we are most likely looking at a surgery. She wants to do the surgery when his eyes have turned to their directional limit and maintained that state of “badness.” We have to go back every two months for measurements. Then she will know how much correction to make on the muscles. As I understand the procedure, if she makes the correction too soon and the brain kicks in to remedy the situation, his eyes will over-correct and turn outward. Please pray for wisdom for the eye doctor. She will need to determine just when it is right to perform the surgery. The success rate of this surgery for children with neurology issues is only about 65% (another prayer request). Of course we are praying first that God would either heal Elijah’s eyes or cause his brain to send the right signals to bring them into alignment before surgery becomes necessary. Otherwise, Elijah is doing quite well. He has a number of words that we recognize (although you would have a hard time distinguishing between his versions of “Dad,” “”dog” and “cat”). Blessings, Steve Svendsen |
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| Monday, April 18, 2004, 11:00 A.M. I want to give you faithful ones a quick update. It has been refreshing to have no trips to the Twin Cities for awhile. Our main prayer concerns, aside from the continual desire that Elijah's shunt and bladder would continue to function properly, are related to eyes and legs. Elijah's eyes do not track together well. He will visit the eye doctor again in May. We are working with him standing next to furniture as therapy, but it is slow going with evidently little sensation below the knees. Please pray some James 5:14-15 prayers: that God would use the best medicine (which was oil anointing in the first century) or his healing hand (the prayer offered in faith) for our son. Blessings, Steve Svendsen. |
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| Friday, March 11, 2005, 4:45 P.M. Elijah behaved very well through his tests yesterday and was a delight to his parents and evidently to some of the staff. He knows how to perform. He did whack his face on a table today, creating a nice red mark on the bridge of his nose--certainly not the end of little boy bumps and scrapes. He had a bladder cystogram yesterday (CMG) to measure bladder pressure and a renal ultrasound to make sure urine has not backed up into the kidneys (the condition that used to become fatal for nearly every spina bifida child before technology caught up). The urologist is encouraging us to medicate Elijah to tone the bladder for the future while admitting that we don't yet know there is a problem. Specific prayer requests: We would like Elijah's bladder to grow in tone and capacity to make medication unnecessary. We and the doctors need wisdom regarding treatment. Also, please don't stop praying about the eyes. We are reminded again that the promises we have to claim before God are not those of healing. God is just as good when he says no. We rest in his mercy and know that he has power to heal but know that he often shows his power through weakness. We pray for relief but rest in his sovereign plan. We are thankful that yesterday's tests showed no problems that would cause fluid to back up into the kidneys. We were even told that the kidneys look better than they did in September. We are not opposed to medications, but would prefer to put them off as long as it is possible to do so. We have a break from scheduled appointments until May and June--not until September for the urologist (who, FYI, has a partner in practice named Yuri!). Thank you for visiting and praying. Blessings, Steve Svendsen |
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| Friday, March 4, 2005, 12:30 P.M. Elijah had another CT scan on his head the end of February. The scan was scheduled in a "regular" hospital attached to Gillette. They were not used to working with babies and strapped his arms beneath his back with velcro straps and asked him to be still and not cry for three minutes. Right. We tried again later with no straps and Dad being the entertainment, dressed in lead, praying and making faces. No problem. We are praising God that the scan results showed the formerly enlarged ventricles (in September) had returned to normal size. We are also working with the orthopedic surgeon to get the left foot into a good position for walking through splinting and therapy. This Thursday, March 10, is a big day. Elijah will see the urologist after a bladder test and a renal ultrasound. One test is about an hour long. Please pray for Elijah to put up with this as well as for good results. Somewhere in there the orthopedic surgeon plans to take a look at the foot. Thank you for praying. The eyes are still occasionally crossing, but not as much. We would appreciate prayers about that as well. Blessings, Steve. |
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| Tuesday, February 8, 2005, 12:30 P.M. Someone mentioned that I had left you hanging with my last message. Sorry. Elijah did do great after surgery and we did get to go home. I think the whole thing was harder on us than him. We will go back to get his orange cast off this Friday. I am in Lafayette, Indiana at a biblical counseling training conference with Caleb this week. Sarah is holding down the fort well as usual. Having attended a workshop by an OB/GYN on counseling families facing the ethics and stress of pre-natal diagnosis (like neural tube defects), I was reminded again that Elijah is a gift to us from God. We never would have asked for this trial, but the Giver of life makes no mistakes. Our desire is to help others see that we should not refrain from having children because of fear that we will conceive a child with Spina Bifida or any other birth defect. Fear is a self-preserving, loveless thing that makes God less than he has shown himself to be. No regrets here. Blessings, Steve Svendsen |
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| Friday, January 21, 2005, 12:30 P.M. Elijah's surgery went well today! He handled the trip great, with no fussing. He came out of anethesia quickly and was quite unimpressed. He got so fussy that the nurses came to get us for some Mom therapy. That fixed him. The actual procedure took only about twenty minutes, with anethesia and casting on either side of that. The orthopedic surgeon lengthened the posterior tendons on Elijah's left foot. We are hopeful that we can go home tonight, but will wait for the surgeon's O.K. He is due for more antibiotics at 5:00 P.M. and we will hopefully get word around then. The kids are great whether we return or not, with homeschool moms bringing in a turkey dinner tonight. BTW, the surgeon picked up on the fact that I was reading a John MacArthur book on leadership. He is evidently a MacArthur fan. Interesting. Please pray for Elijah's recovery (no infection, swelling, etc.) and for his eyes to start tracking better. When fatigue sets in, focusing gets difficult. Thank you for checking up on us. Look for four new pictures in the photo gallery from surgery day. Blessings, Steve Svendsen. |
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| Friday, January 14, 2005, 10:45 A.M. Elijah had an appointment with a pediatric opthamologist on Wednesday in Forest Lake, Minnesota. His right eye often wants to turn inward. We had been informed that typical options for a lazy are: a patch, glasses or surgery. We were very thankful that Elijah behaved well (talked to the tech and the doctor) and that we were counseled to merely watch him until a follow-up appointment in May. She says these things sometimes go away. If not, we'll consider our options. Next Friday (1-21-05) is the day of Elijah's heel surgery. We will get on the road at 4:30 A.M., needing to arrive at Gillette Children's Hospital by 6:30 A.M. for an 8:00 A.M. surgery. Concerns to pray about: 1) That the surgery will be on time. Elijah may not nurse for a number of hours before the surgery. 2) That the IV can be set without the exploding veins he had in his first hospital stay. 3) That he would be able to have pain control through means other than morphine or other narcotics. 4) That the surgery would successfully release Elijah's heel into position. 5) That Elijah would recover quickly following surgery and not have to stay overnight in the hospital. Thank you for praying! Blessings, Steve Svendsen. |
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| Monday, December 20, 2004, 3:00 P.M. Elijah is six months old today! We need to continually remind ourselves how blessed we are that he is as healthy as he is. Some of his minor developmental issues (weakness below the knees, possible lazy eye, urology questions…) pale next to those early days when we were just praying he would keep breathing. Aside from an annoying cough and a puzzling rash (allergy?) on his cheeks, Elijah is well and is learning new tricks. We are working on sitting up right now. He is getting better, but occasionally does a face plant. Some friends loaned us an “Exer-saucer” (nicknamed the “Torture-saucer” because he hated it at first), which the physical therapist recommended for improving his balance and strengthening his legs. It has engaging toys attached that he is starting to enjoy. Elijah’s left heel surgery is scheduled at Gillette Children’s Hospital for January 21 at 8:00 A.M. We have been asked to arrive at 6:30 A.M. Aside from praying for the success of the surgery, you might pray that Elijah can stand going without nursing for a few hours (and that the surgery would be on time), that he would tolerate the general anesthesia and that the anesthetists would be able to get the IV in without a vein explosion (a problem in his first days). He is scheduled to spend the night in the hospital, but we are hopeful that he will be well enough to go home later in the day. We’ll give you more information as it becomes available. Thank you for praying. Blessings, Steve Svendsen. |
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| November 23, 2004, 2:45 P.M. Thank you to those of you who have dropped us a note saying you are still viewing Elijah’s website. I was pleasantly surprised at how many responded. Elijah had an appointment with his orthopedist last Thursday. He just returned from Ghana and said he was happy to be back on an easier club foot case. We still do not know when his January surgery will be, but it will release some posterior tendons on his left foot. I also neglected to mention that the neurosurgeon ordered another head CT scan before we see him again in January. Based on the last CT, Elijah’s ventricles had not shrunk after the shunt surgery (not unusual) and he wants to watch to make sure they do not get larger (an indication of shunt malfunction). Elijah has a cold now, which causes him (and Sarah) no little frustration when he needs to nurse and cannot breathe through his nose. We are thankful for bulb syringes. Today a physical therapist came to our home during my lunch hour. Elijah performed well physically and entertained all of us. Thank you for your concern. Blessings, Steve Svendsen. |
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| Thursday, November 11, 2004, 3:00 P.M. Elijah had an appointment with his local pediatrician on Monday for some shots and a “well child” checkup. He is still at the top of the chart for height and weight, weighing 18 lbs., 4 oz. (at age 4 1/2 months). On Tuesday we had an appointment at Gillette (St. Paul) with the neurosurgeon. Elijah, awakened from a sound sleep and running a low-grade fever after his immunizations, was not impressed with all the poking and lights in the eyes and undressing. The neurosurgeon has referred us to a pediatric opthamologist because he is “concerned” about Elijah’s ability to follow moving objects. We suspect the boy was just worn out, but will schedule the appointment just the same. We will be seeing the orthopedic surgeon next Thursday (11-18-04) and will possibly know when Elijah’s next heel surgery will happen (likely early January). We think Elijah is doing very well, all things considered. We like to hear from you who visit this site just to know it is worth the effort to keep it updated. If you could click the link to our e-mail once in awhile and let us know you visited we would appreciate it. Thank you for praying. Blessings, Steve Svendsen |
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| Monday, November 1, 2004, 1:45 P.M. Elijah is doing very well. We enjoyed hearing him cackle at his sisters over the weekend. We will be traveling to the Twin Cities November 9 for a routine appointment with the neurologist and a visit with the Assistive Technology fellow to evaluate Elijah's splints. He is growing rapidly. We continue to pray for the wisdom and skill of those treating our son. You might also pray for our orthopedist, Stephen England, who is traveling this week on a medical missions trip to Ghana. We would like him back safe and sound. Thank you for praying. Blessings, Steve Svendsen. |
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| October 12, 2004, 10:30 P.M. Hello again. Elijah was appointment-free for a month, but had a scheduled ortho visit on Friday. We have been a little disappointed that Elijah's left heel is still soft (he has a rounded "rocker foot") after the heel tendon release, three weeks of casting and a month of splinting. The orthopedic surgeon did not act surprised and scheduled an additional heel surgery for January. This one will require general anesthesia. Otherwise, Elijah is still growing and developing normally. He sat (and slept) through five hours of creation science lectures at a conference with Ken Ham in the last two days. Hannah got him to chuckle at her today. Thank you for praying and being concerned enough to check Elijah's website. It means a great deal to us to know how many people want to keep up-to-date on our son's condition. Blessings, Steve Svendsen. |
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| September 10, 2004, 9:10 A.M. I wanted to add a note to follow up on yesterday's update. The urologist said Elijah's bladder is not retaining fluid and that his kidneys look good. This will need to be monitored because of the inevitable problems associated with his form of spina bifida, but Dr. Wolpert said he does not need to meet with us for six months. Elijah's little splints are lightweight and easy to put on and take off. He will work up to wearing them almost around the clock. He has very little movement of his left ankle (a prayer request). I forgot to mention yesterday that Elijah now weighs over 16 pounds! A few days ago he was lying on his stomach and slowly lifted his casted leg up, arching his back and rolled over (at 2 1/2 months?!). We don't anticipate an NFL career, but are glad he's so strong. Our objective, as we told our boys, is to train a warrior for Christ, not an athlete. Blessings, Steve Svendsen. |
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| Thursday, September 9, 2004, 2:45 P.M. We are at Gillette Children's Hospital for a second day of appointments. We had a routine CT scan yesterday, but have not heard that there is any problem. The neurosurgeon's nurse-practitioner gave Elijah some special attention by adding him to her schedule yesterday just to make sure he is not having any shunt trouble. She said he looks great (audible sigh of relief after three vomiting episodes and other feared signs of shunt malfunction). Elijah has been performing for all the staff here, smiling and talking to everyone while they treat him (say ahhhhh, like the nurses). Elijah got his first bath yesterday! He had his cast removed and the orthopedic specialist, Dr. England, said he could go without bracing for a day. He seemed to love being in the water. Today we are back for a bladder test, a renal ultrasound (both done) and an appointment with the urologist (later). Right now we are waiting for his splints to be made. He will have one on each foot to preserve what the casting did, but thankfully no bar between the splints. Thank you for praying. Elijah has been a trooper through all the poking and prodding (and catheterizing). Check the website for new pictures. Blessings, Steve Svendsen. |
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| Friday, September 3, 2004, 9:30 A.M. Elijah did not have any appointments this week, but he’ll make up for that on Wednesday and Thursday next week. He has a CT scan Wednesday morning and will see the orthopedist to move from casting to bracing on Wednesday afternoon. We’re looking forward to seeing two legs, even if they are in braces. On Thursday morning he will have a urology test and then see the urologist in the afternoon. Those of you who pray for him can remember a couple of things: 1) That he, already a creature of habit, would handle all the interruptions to his normal nap patterns Wednesday and Thursday and that 2) his tests would determine that his shunt, bowel and bladder are doing what they were designed to do. We already see some bowel and bladder control issues, but either can produce dangerous complications. Thank you for visiting Elijah’s site. Blessings, Steve Svendsen. |
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| Thursday, August 26, 2004, 11:00 A.M. Elijah had an appointment with Dr. Petronio, the neurosurgeon, on Tuesday. We were pleased that, since the wounds on Elijah’s back have closed, we were told we no longer need to dress it. Dr. Petronio said that Elijah’s fontanel (soft spot) was a little fuller than he expected. A stiff or bulging fontanel is one (only one) of the warning signs that there could be a shunt malfunction. Because he shows no other signs, is eating well and has such a good disposition, Dr. Petronio did not seem overly concerned. We, on the other hand, are watching the little guy even more closely than before. The fluid pressure that builds up due to a malfunction can cause severe brain damage. A shunt malfunction, if caught early, means only a trip to St. Paul for surgery and an overnight hospital stay. A brighter note: We were happy to learn that Elijah has qualified for a Wisconsin program called Healthy Start, which will cover all of his medical bills. We are very thankful, because his care has been the best available (which means the most expensive available). Pray that Elijah’s shunt would function properly or that we would have sharp eyes to notice the changes that occur if it doesn’t. Blessings, Steve |
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| Tuesday, August 17, 2004, 8:30 A.M. We were surprised yesterday at our casting appointment at Gillette that Elijah’s very busy orthopedic surgeon, Dr. England, took the time to examine Elijah’s legs. We had not been scheduled with him until next week, but he happened to be in the clinic and stopped to take a look. He said the right foot is corrected and needs no more casting (yeah!). He then went ahead and released Elijah’s left heel cord (very minor surgery) a week early, which will allow the heel to settle into position. This cast will stay on for three weeks, sufficient time in an infant for the tendon to heal (“fearfully and wonderfully made”). Elijah was a trooper through the procedure and re-casting, though the shot of anesthetic was obviously very uncomfortable. He slept well last night (not all night yet). He is now eight weeks old and weighs 14 pounds (without the cast). He has taken much to cooing and smiling when he has a full tummy and a clean diaper. He does take appointments if you would like to come and see him. Thank you for your interest and effective praying. Blessings, Steve. |
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| Wednesday, August 11, 2004, 2:45 P.M. Elijah had a double cast change yesterday at Gillette. The casting professional said that the left foot appears to be plateaued, which means it is almost time for the heel chord (Achilles tendon) release. It is supposedly no more pain than a shot and will grow back in an infant. This will presumably be a simple procedure and will require a three-week casting on that foot. We expect that will happen on the 24th, Elijah's long day of appointments (neuro, ortho, casting). We continue to enjoy our little boy, who is regularly cooing and smiling at us. I hated to go to work this morning after holding him while he talked, smiled and looked lovingly at his daddy. I am aware that Elijah could face some real trails in the future but am more aware of how powerful our God is. How blessed we are that so many people have been calling Elijah's name before our Father's throne. We would do well to take a cue from Elijah: talk, smile and look lovingly toward our heavenly Father who loves his own and holds them in his omnipotent grasp. You can trust a Father like that. Blessings, Steve Svendsen.
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| Wednesday, August 4, 2004, 9:00 A.M. Elijah got both of his casts replaced yesterday. his right (non-club) foot looks perfect after only one week of a cast. We still feel sorry for the little guy, but know it is best to get this done. His left foot is now being brought up. In about three weeks he will have his achilles tendon cut (a surprisingly minor procedure--don't worry, it grows back in an infant) to fully bring the foot to where it needs to be. He is still growing and eating well. His back ulcers are starting to show signs of healing, for which we are very thankful. He is getting better at eye contact and is giving away smiles to a selective group. Thank you for visiting Elijah's site. Blessings, Steve. |
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| July 28, 2004, 9:00 A.M. Elijah had a full day at Gillette Children's Hospital yesterday. We pointed out to the casting specialist that Elijah's right foot was also slightly turned in. The orthopedist said he had been so concerned with the club foot that he had overlooked the other. Long story short--Elijah now has twin hip-to-toe casts. The neurosurgeon says the holes on Elijah's back look "good" (not a word we'd use). He explained that, because of sutures working their way out, Elijah may get more holes before he gets rid of the first ones. He brought in a plastic surgeon, who suggested we use a special antibiotic ointment to speed healing. Elijah was not weighed at this appointment, but looks very healthy. We were rejected by the most attractive program to help with medical expenses because we have too much money :) I still think we'll qualify for another. Thank you for praying. Blessings, Steve. |
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| Monday, July 26, 2004, 8:10 A.M. Elijah has three appointments at Gillette Children's Hospital in St. Paul tomorrow. He will get his third cast removed, be examined by his orthopedic specialist, get his fourth cast put on, and visit the neurosurgeon. His back still has a few small ulcers that are seeping, but they do not appear infected. It is a good thing that he is getting his cast changed weekly, because he appears to be growing rapidly! He has added an extra chin and has a little roll of thigh fat spilling out around the top of his cast. We will fill you in on the details some time after his appointment. Thank you for praying. Blessings, Steve |
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| Tuesday, July 20, 9:35 A.M. Sorry for the wait. Elijah's appointment with the neurosurgeon went well. He removed the stitches on Elijah's back. The fluid seepage is still happening, but the doctor says it is not consistent with CSF. He says Elijah looks "great" and thinks the drainage is just dead flesh from the original wound. We would very much like the little ulcers to heal. No infection is evident. Elijah got his third cast yesterday. He is gaining weight, eating well and is becoming more and more alert. He did very well during his first stay at Camp Fairwood in Westfield, Wisconsin (Dad was speaking). During that week (July 11-17) we kept Elijah in the cabin to prevent exposure to any possible infectious diseases present in 135 junior campers (whooping cough is making a comeback in Wisconsin). Elijah went to church for the first time on Sunday. He got lots of attention. Thank you for being concerned and praying. Blessings, Steve |
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| Saturday, July 3, 2004, 12:30 P.M. Elijah is adjusting well to home, having lots of hands to do therapy on his hands, hips, knees and ankles. Lydia has not seemed jealous yet. He is just a new doll that moves and cries. He still has just a small spot on his back bandage each day when we change it. His temperature has been fine and he is sleeping and eating very well, so we continue to watch it. We are starting to get back to "Svendsen normal" (chaos with fewer surprises). Next Friday we start our regular trips to St. Paul for castings and neurologist appointments. My uncle John has blessed us with a minivan so we can save on gasoline expense. We plan to spend July 12-17 doing camp ministry in Wisconsin. Please pray that we would be wise in Elijah's care and that his shunt and back wound would heal completely without infection. Blessings, Steve. |
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| Tuesday, 5:30 P.M. Don't stop praying yet. The nurses discovered a little seepage of what may be cerebrospinal fluid from the wound caused by
Elijah's back surgery. The neurosurgeon was consulted and decided to send us home anyway. He said it could just be some that was left under the sutures after surgery. The nurse-practitioner is putting some skin glue over the sutures. We are to watch the area and monitor Elijah for any fever and bring him back if there are problems. We prayed for wisdom for everyone treating Elijah today, so we will go home (with mixed emotions). Please pray for sharp eyes for us and healing without infection for Elijah.
Blessings, Steve. |
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| Tuesday, June 29, 2004, 10:30 A.M. Elijah is coming home today! His urinary tract evaluations showed that he is able to empty his bladder (though not necessarily like most of us). The continual prayer requests will surround shunt function and the avoidance of infection. Please also pray that he will adjust well at home and that the kids (Lydia the dethroned queen in particular) will adjust well to him. We still have to jump through all the hoops necessary to get out of this place. We will be getting several appointments set up for the next three months, including weekly visits to Gillette Children's Hospital to get Elijah's foot re-casted. Our van will soon know the way. We are experiencing God's goodness, but have learned that he is still good even when things don't go according to our plan.
Blessings,
Steve |
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| Monday, 6-28-04, 11:36 A.M. Elijah was placed on oxygen yesterday and is once again off. He had some low numbers which naturally caused us concern. The neurosurgeon was puzzled because Elijah stayed pink and his heartbeat stayed consistent. Strangely the numbers stayed low after placing him on the oxygen. At 11:00 P.M. the numbers shot up (to stay) when a new nurse moved the sensor from his hand to his foot! Ninety-eight percent of the things we worry about never materialize and the other two percent still happen whether we worry or not (Matthew 6:34; Philippians 4:4-8). Elijah is scheduled to have a VCUG (a bladder x-ray) in which a catheter is inserted and dye injected into the bladder to see how it empties. People with Spina Bifida often have trouble emptying their bladder, which can cause obvious other medical issues. Also, the occupational therapist examined Elijah again today. She says she thinks he will be able to walk to some extent. After these last days we're content that he can breathe. Elijah and Sarah slept wonderfully last night. We're starting to hear the word "home" from the doctors! Blessings, Steve |
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| Sunday, June 27, 2004, 2:00 P.M. Elijah is beginning to nurse well, but his breathing is often so shallow that he sets off the alarms measuring oxygen saturation. We had been unconcerned until today, when he set off the alarms several times while at rest. What does this mean? We do not yet have a medical answer. It could be the residual effects of the fluid pressure, but will have to wait. Those giving medical care to Elijah need wisdom. Thank you for praying. Sarah slept a little better last night. |
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| Saturday, 9:30 A.M.: Elijah is pretty sleepy this morning. His breathing tube was just in the way after surgery, so it was removed last night. He has been taken off morphine, then off Tylenol with codeine and now will just get Tylenol. He has not had an episode of apnea since last night. He does sometimes get lower oxygen sats when he is nursing, but this is apparently only shallow breathing from the drugs and fatigue. He had x-rays of the shunt this morning which required undressing. He was not amused. We just learned that Elijah's club foot will be getting a cast this morning.
Prayer requests:
1. That the shunt would do its job and not get infected. There is an increased risk of this during the first 4-6 weeks.
2. That his IV will last one more day.
3. Praise God that we were able to get such prompt attention yesterday.
Blessings, Steve |
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| 9:21 P.M.
Praying friends and family:
Elijah did undergo surgery earlier this evening to insert a shunt in his head. We said we would even be thankful for a "no" from God and here is why: Late this afternoon Elijah began experiencing apnea--that is--he stopped breathing several times. This was a result of the pressure from the fluid. Dr. Petronio told us that if the ultrasound had shown no change in fluid (which it did, hence, surgery) he was considering sending us home to watch. Imagine being 100 miles from help with a child who keeps turning blue. "No" is not a bad answer. In this case it was the best answer.
Blessings,
Steve |
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| Elijah is scheduled for surgery this afternoon at 5:00 P.M. It could be later since they tacked him on the end. We had a couple of scary times today when he momentarily stopped breathing (apnea). His sutures in his back may also be leaking. We are hoping these things are related to the increasing fluid pressure and will be remedied by the surgery. Right now his oxygen sats are staying in the upper 90's. He has had no need of oxygen his whole time in St. Paul.
Praises and prayer requests:
1. It was good that his IV (in the head) was able to work on the second try (seven the other night). He is on antibiotics again already.
2. Pray that the shunt and the head IV will not affect nursing, that in fact Elijah will soon become a robust eater.
Blessings,
Steve |
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| June 25, 2004, morning
Elijah's prayer warriors:
Here is today’s news:
Elijah slept well last night (for a newborn) and so did Sarah (for a nursing mother of a hospitalized newborn with special needs). It was wonderful for me (Steve) to get to hold him finally at 5:45 last night. He had "horizontal only" restrictions until that time because of the back surgery, making it hard for me to hold him.
Today’s ultrasound will determine whether or not he needs the shunt. As of around 6:00 A.M. his soft spots appeared to still be bulging. Please don’t stop praying. If God says "yes" we will publicly rejoice in the healing. If he says "no" we will rejoice that his grace is sufficient in weakness and that he has allowed men to discover medical ways of dealing with hydrocephalus.
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| June 24, 2004
Elijah's prayer warriors:
Here is today’s news:
Elijah is IV-free for the time being, which makes feeding him much easier. His remaining antibiotics are to be administered by shot (painful, but quick).
We are waiting to hear about the possible shunt surgery. His head circumference did not increase since yesterday, but the people here offer almost no chance of him going without a shunt-now or later. We can still ask until our Father says "no." If the surgery is going to happen he will need a PIC line IV, another touchy procedure with his exploding veins (a prayer request). An ultrasound will measure whether the cerebrospinal fluid volume in his brain ventricles has increased, decreased (our prayer) or stayed level.
Sarah is able to nurse and Elijah likes to nurse, a good combination. Praise God. He does need to have a little better nursing work ethic. He gets sleepy quickly and would prefer the milk be delivered without much effort.
We met with an occupational therapist this afternoon. She checked his motor function and gave us some very preliminary information on what types of paralysis Elijah has. The encouraging news is that he does have at this point good range of motion in his knees and hips. There are some question marks about his calf muscles, feet and ankles. He seems to have little, if any, sensation in his feet.
Elijah does not appear to have any bladder or bowel control at this time. The good news is that he is able to empty both. Some children with neural tube defects cannot empty their bladders and have backups that cause infections and kidney damage.
Sarah still needs to catch up on her sleep.
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| June 23, 2004
Elijah's prayer warriors:
Our son's name is Elijah Mark Svendsen and he is a strapping young lad (8 lbs., 5 oz.) with a gift from God that will likely allow him to experience things most children do not. Our family (even the little ones) has already been able to see that the sovereignty of God is not just a theological term Dad uses from the pulpit.
Myelomeningocele is the proper name for Elijah's form of Spina Bifida. It has no known cause and occurs in the womb before the mother knows she is pregnant. It can be diagnosed by tests, but cannot be treated in the womb. For the record, we have no regrets at having eight children. Which one would you send back?
The kids have risen to the occasion. They have kept house, changed diapers, "tucked in" siblings, prepared meals, managed phone calls, washed and hung clothes, picked potato bugs and kept track of all the thank you's we need to write while we have been here in the hospital. I think we need to throw them a party when this settles down.
We have honestly been brought to worship through all the weeping. Hard is not necessarily bad. We are honestly content in knowing that God is in the business of bringing us to the place where he will get the maximum glory--even if that means we will suffer hardship. We are not spiritual giants, just disciples God has decided to mold some more.
We still do not know the extent of his future disability. We do know that 90% of children with his condition develop hydrocephalus (water on the brain), which would likely require further surgery (shunt). He already has an increased fluid volume, but the coming days will tell what treatment is required.
Prayer requests:
Immediate needs:
1. Elijah's CSF (cerebral spinal fluid) is increasing in volume. We want that to stop and for a free flow of fluid between brain ventricles and the spinal column to eliminate the need for surgery. Too much fluid can cause irreversible brain damage.
2. Sarah is very worn out and needs rest. She went from over an hour of pushing in the home delivery (6-20-04) to a local hospital, saw her son hauled away in an ambulance (she was not allowed to ride for liability reasons), and left with me for St. Paul Children's Hospital 100 miles away in the space of about 3-4 hours.
3. That there would be no cognitive damage from fluid pressure on the brain.
4. For Grandpa and Grandma Svendsen in Harlan, Iowa who are providing care for the five younger children this week.
5. That we would show Jesus to the staff here at the hospital. Our nurses have already been impressed with the way God's people at Rice Lake Baptist Church have reached out to our family.
Longer term:
1. Logistics of traveling regularly to the Twin Cities for orthopedics, urology, neurology...
2. We ask God for great things but have no promise for healing. We want to accept God's answer and have our children do the same. Please pray that we will trust him to give us what brings him maximum glory. Which takes more faith, trusting God to give you what you want or trusting him when he gives you what you would never have asked for?
Beyond our wildest dreams:
1. That God would reverse the nerve damage to Elijah's ankles, feet, bladder and bowels.
God is changeless through all of this. We are experiencing to a small degree the hard part of living life in a sin-cursed world. His actions are not predictable but his character is. May he rescue us from the idolatrous fancy of thinking we must have healthy children.
Thank you for praying.
Blessings-
Steve Svendsen
grow.in.grace@juno.com |
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