Elijah Mark Svendsen

2008-11-07T09:16:00.003-06:00

Elijah did great on the medical roller coaster at Gillette Children's Hospital in St. Paul yesterday. Little brother Will (1), big sister Lydia (6) and both parents accompanied him. He started about 9 a.m. with the standard "height and weight," which is no big deal unless you have to remove your shoes and braces and stand tall on feet you can't feel. He stands 3' 6" and weighs fifty pounds.

Next was the cystometrogram, a long test requiring the patient to lie very still while the bladder is filled to capacity (and beyond) through a catheter and then drained--all the while measuring internal pressure. This determines bladder capacity and if the patient is in danger of reflux into the ureters/kidneys. Elijah enjoyed watching Robin Hood during this test, periodically giving the nurse vital information about the characters on the screen. At age four he is still not nervous about lying half-naked on a table and carrying on a conversation with medical personnel.

Next was a renal ultrasound on a different hospital floor (bladder/kidney pictures). The technician mistook Elijah's Robin Hood hat for a Peter Pan hat. He corrected her.

Then we saw the urologist, Dr. David Vandersteen. He likes Elijah--calls him "the prophet." He also knew the difference between Peter Pan and Robin Hood. He told us what we suspected during the CMG, that Elijah's bladder capacity and pressures are back where they should be for his age! We assume this means he is responding to the intermittent catheterization program and to the oxybutinin patches he wears around the clock (Elijah's only medication). You may remember the report from the summer of 2007 that said his bladder was in bad shape.

Next was Dr. Stephen England, Elijah's orthopedic surgeon and another very kid-friendly physician. He broke away from his surgery schedule to see Elijah and save us an extra trip to St. Paul. He was also encouraged at Elijah's mobility but said he thinks Elijah should have physical therapy to maintain his progress--a point with which Elijah's state-funded HMO disagrees.

After a quick lunch and a visit to the Assistive Technology department to correct a problem with Elijah's new Green Bay Packers braces (no shortage of fun poked by all the Viking fans), we were off to the west side of the Twin Cities to see Dr. Marshall Taniguchi, a Packer fan and pediatric physiatrist (in that order). His job as a rehabilitation physician is to evaluate Elijah's condition and recommend therapy or devices that may be neccessary to keep him independent and ambulatory. He also thinks therapy is necessary and plans to write a letter to the HMO.

By then it was the height of the evening commute, so we maneuvered our way back to Wisconsin and rewarded our young soldier at home with a late McDonald's supper and a video. He slept in this morning.

We are very thankful to God for his healing power, for medical science (the result of men obeying God's command to subdue the earth) and for the easy-going demeanor of Elijah through a very long day of being poked, prodded and asked to perform. We are asking God to help us figure out how to keep Elijah dry between cathings (a procedure he will have to learn). This is a small problem next to our concerns until yesterday about protecting his kidneys from a spasmodic bladder, but we are interested in helping Elijah to achieve "social continence."

The other prayer concern is that we could find ways to keep Elijah physically active. Young people with his condition usually become overweight and lose mobility as a result.

Thanks for reading through this whole treatise. We are thankful for you.

Before the Face of God,
Steve

Big day coming up

2008-10-29T09:21:00.005-05:00

Elijah has a big day of appointments at Gillette Children's Hospital (Clinic) coming up on November 6. This is not because of a problem, but they like to get lots of routine procedures scheduled the same day to save us the hundred-mile trip.

We need prayer because he is scheduled for tests and appointments from 9 a.m. until about 3:30p.m. That is a LONG day for a four year old. The doctors and nurses need wisdom and skill, especially urology. Please keep praying that he would continue intermittent catheterization without infection. We wouldn't mind if Elijah's bowel and bladder function would allow him social continence, but God knows best.

For some unexplained reason Elijah's shunt reset itself last spring/summer to the default position, which was more puzzling than dangerous. We may have to have it checked again to make sure there is no problem. The neurosurgeon speaks of shunt replacement surgery like it is trimming fingernails, but we would be pleased if God granted Elijah a long-lasting shunt. I don't know if we need the shunt setting checked again on the 6th, but we need prayer that it would stay at "1.5."

Thanks for your concern and prayers.

Before His Face,
Steve

Sorry for the long pause...

2008-06-03T10:33:00.004-05:00

No news has been for the most part good news. Elijah recovered from his leg surgery last spring and, despite one doctor's opinion that he would only walk with "assistance," learned to use his Loftstrand crutches and then promptly ditched them for walking alone!

Eye patches are gone with no apparent changes in vision. He still has a little eye wandering when he is tired, but is keeping things under control most of the time.

We are still praying about the bowel and bladder issues. We would like to achieve a level of "social continence," but medicine, timing and diet need to be more in sync to accomplish that. The good thing is that he isn't even four and is willing to work on it. Elijah has not had even one bladder infection through these months of intermittent catheterization, for which we are thankful.

Thank you for your faithfulness. I know how many people still visit because of the number who visit my blog after visiting Elijah's.

Blessings,
Steve for the family

New challenges

2007-06-21T08:35:00.000-05:00

On June 14 Elijah had his largest medical day since he was a newborn. We started at 9 a.m. and ended at 4 p.m. his leg is healing well and he no longer has a cast. The more serious tests were in the urology department. We were glad to hear that Elijah's kidneys look great, but learned at the same time that his bladder looks terrible. Practically, what this means is that he is incapable of holding urine at low pressure like most of us do. This puts him in danger of reflux into his kidneys, which is never good. We will be putting Elijah on an intermittent catheterization program as well as tripling his dosage of the bladder relaxing medicine. Now we can start potty training, but in a very different way. As usual, we are satisfied that this is for God's glory and, hence, for our good. Still no shortage of joy here. This is Elijah's new "normal."

Yesterday was Elijah's third birthday. Boy, was he excited, as you can see.

Big day Thursday (6-14-2007)

2007-06-11T09:39:00.000-05:00

Elijah will have a big day of appointments this Thursday. He will finally get his cast removed and get an X-ray to make sure things are growing as they should. The bigger tests are urological and involve catheterization and having to lie still during poking and prodding. You might pray that Elijah will be able to handle these treatments with joy and remain patient with the technicians and docs even when it is nap time.

Follow-up visit

2007-05-22T08:25:00.000-05:00

Today we are at Gillette for cast removal (done), x-ray (done), re-casting and a routine CT scan. Our two prayer requests at church yesterday were that Elijah would handle the noises of the saw (that went great --he covered his ears) and the CT, as well as that he would be able to get a swimmer-type weight-bearing cast.

It looks as if the swimmer cast is out because Elijah still has incisions that are healing, but the doc says he will be able to bear weight. We are waiting right now for the new cast (he says he wants green this time).

The CT machine can be intimidating--a large donut that makes noise like a jet engine warming up. Since Elijah loves Thomas Train so much, we told him to be a "useful engine" while he has to go on the tracks into the tunnel. He has been telling people about it, but we'll see if he is so easy-going in the room.

Ready to go home

2007-05-04T12:36:00.000-05:00

Elijah is all cast and ready to go home. He is eating his lunch right now. Before he ate he prayed for safety for Caleb (who is traveling home from Cedarville, Ohio today) and that the chicken nuggets would be "yum."

As we wander around this hospital so full of hurting children and hurting families we recognize how merciful God has been to us. Elijah hasn't even cried through this whole process. We are thankful that God has chosen to work his sovereign plan using the effective prayers of his people.

Apart from our Master and what (those) he has given us we have nothing good. As David said, "The lines have fallen to me in pleasant places."

Thank you.

Getting ready for casting

2007-05-04T11:31:00.000-05:00

Dr. Stephen England (pictured at left, our favorite doc) has given the O.K. for casting and going home. We'll try to get a photo to the blog of Elijah's cast once it is on. He gets to pick his cast color. He says he wants "dark blue" so he can be like Gordon (from Thomas the Train).

Day two

2007-05-04T08:41:00.000-05:00

Elijah had a relatively restful night, with the exception of periodic wakings for blood pressure, temperature and diaper checks. He appears to be very comfortable and is taking only Tylenol for pain.

His toes looked a little swollen last night so he now has ice on his foot. Casting will happen sometime this morning, we think.

He has had some cell phone conversations with siblings, as pictured. It is amusing to listen in on a phone conversation between a two and a four-year-old.

5:13 p.m.

2007-05-03T17:13:00.000-05:00

Elijah's stomach started gurgling about 1:30 and he successfuly devoured 2 graham crackers. Then came a peanut butter and jelly sandwich and some chocolate milk. He was still calling for more when those were conquered, but we did not want to push it. He is now tearing into a tray with a cheeseburger, broccoli, a salad, an orange, celery sticks, bread, cranberry juice, chocolate milk and a cookie. He may need parental assistance on this one.

Thank you for visiting and praying. The three of us need some sleep tonight.

11:44 a.m.

2007-05-03T11:37:00.000-05:00

We are back in the room now! Elijah is pretty straight-faced and groggy, although, as you see in the picture, he is a pretty good actor. The recovery nurse in the picture said he was both inquisitive and informative after the surgery. He was curious about the pictures on his diaper and let the nurses know when his blood pressure cuff went tight.

We will throw another picture on later so you can see the wrapped leg (to be cast tomorrow before we leave).

10:52 a.m.

2007-05-03T09:41:00.000-05:00

Surgery is done and we have spoken with both surgeons. Everything went as planned (both by physicians and a sovereign God). We are thankful for your praying.

We would appreciate it if you would ask our Father to keep Elijah from infection. The urologist placed a catheter for a few days to prevent infection near the circumcision, but of course that can always mean there is a risk of a bladder infection. Dr. England also severed Elijah's fibula to make it go along for the ride with the tibial rotation. Again, more risk of infection. There will likely be a low dose of antibiotic prescribed as a precaution.

I will report back after we have seen Elijah.

9:38 a.m.

2007-05-03T09:34:00.000-05:00

Dr. Wolpert the urology surgeon just spoke with us. He is heading in right now to start his work. We assume that means Dr. England is done.

9:11 a.m.

2007-05-03T09:10:00.000-05:00

Surgery just called and said Elijah is stable and that Dr. England (ortho) is still working. We are guessing the urology surgeon was late because he was supposed to go first. The circumcision is likely a less complicated procedure.

Note the Hot Wheels at Elijah's side in pre-op. Gillette employs people in a department called Child Life who are basically paid to play with the kids and set them at ease. The Child Life specialist brought in "Surgery Bear" to pre-op to show Elijah the things that would be happening, including a sample mask and an I.V.

8:11 a.m.

2007-05-03T08:11:00.000-05:00

Wireless Internet is nice. We are sitting in the waiting room for this update. Surgery started at about 7:45 a.m.

Elijah was well-behaved and not a bit scared going into surgery. I was allowed to accompany him right into the operating room. He was wide-eyed as he looked around at all the equipment and people (all prepared just for him). I held him and his mask as the nurse anesthetist cracked jokes. He went to sleep smiling.

Thank you for praying about the trip over to the Cities. Elijah talked a little and slept a lot. He said, "I'm hungry" once in pre-op, but we are thankful he is very easily distracted.

We have a pager and will get and report updates from surgery as they become available.

6:49 a.m.

2007-05-03T06:49:00.000-05:00

We left home at 4:20 a.m. and arived at Gillette at 6:10 a.m. Elijah is in a great mood, impressing the nurses by spelling his name after seeing it on the end of his pre-surgery bed. So far no fuss about the dry red spots on his sides. We'll report later.

Surgery still on for Thursday

2007-05-02T15:00:00.000-05:00

Surgery is still on for tomorrow, but Elijah does have a rash that could be a deal-breaker. We'll keep you posted. We are supposed to be at Gillette in St. Paul at 6:15 a.m.

I will seek to update the blog tomorrow as I am able.

Note the careful use of the towel in Elijah's homeschool science experiment. He loves to slide a chair over to the sink and make wet discoveries. At least he's neat.

New surgery date

2007-04-25T14:42:00.000-05:00

Elijah is feeling much better. This morning's quote upon seeing Sarah in her colorful maternity jumper: "Mama, you are beautiful!" The new surgery date is Thursday, May 3. Prayer concerns stay the same as the earlier post with one addition: please pray that he doesn't get another bad cold!

Blessings,
Steve

Surgery postponed

2007-04-16T19:01:00.000-05:00

Elijah has been sick with a fever and congestion for a few days. That is not compatible with surgery, so we will have to wait at least two weeks. Thank you for checking in. Please pray that he will stay healthy for the next attempt. As I write this, Elijah is lounging on the couch watching a "Thomas Train" DVD. He is not his normal, perky self, so we know it is best to wait.

Surgery scheduled

2007-04-07T12:25:00.000-05:00

We learned this week that Elijah will be having surgery on April 18 to again de-rotate his left tibia and transfer a tendon to prevent further recurrence of the club foot. The orthopedic surgeon said he thought is was necessary now because Elijah has started to walk a little, but is held back by the turned foot. He is concerned that waiting could cause damage from walking too long on the side of his soft-boned foot.

The plan is to balance the unopposed tendon on the inside of the foot by splitting it and connecting it to the outside of the foot. This will presumably stop the inward pull that has caused all his problems since before birth.

We were also advised to have a urologist perform the circumcision that was put off at Elijah's birth as long as he is under anesthesia anyway.

Some prayer requests:

Overcoming Elijah's natural fear of the things he will be experiencing. For the first time he told us he was scared when we went to the Gillette clinic.
For the hunger situation. The surgery is scheduled for early in the morning, but first we have to make the 100-mile trip without breakfast.
For pain issues. The leg surgery is less of a concern because of the lack of sensation he has in his lower legs. The companion surgery will likely cause some longer-term discomfort.
Logistics (sleep, ambulation, recreation) during 5-6 weeks of casting (above the knee to the toe).
For the broader schedule that follows for the family, including a pastors-and-wives getaway we have had on the calendar for awhile. We want to be wise about our choice of either skipping the event, leaving Elijah with the older kids or taking him along.

We are ever aware of how blessed we are. Elijah is doing great. Thanks for your concern.

Blessings,
Steve

O.K., about the eggs...

2007-02-02T09:12:00.000-06:00

First of all you have to understand that there is something about Thursdays at the home of the Svendsens. The last two of them have been interesting to say the least. On Thursday the 18th of January, we decided spur of the moment to have an all-girl pizza and game party. It was something Sarah and Rachel had wanted to do before Christmas, but eight of our ten got a nasty virus and then with all the traveling, it just didn’t happen. Anyway, we called all the families in the youth group shortly before noon on that Thursday, and they ALL wanted to come! We ended up with 21 people to feed which included our family. It went really well and the girls laughed a lot.

Well, the following Thursday we decided to feed 20 some people again. You see we found out on Sunday that a man from church was having a kidney stone operation that Thursday. Sarah decided it would be the right thing to do to offer to bring supper over that night for their family of eleven. Then she found out that no one had signed up to bring a meal to yet another post-surgery family for that Thursday. She decided to feed them also. Then, of course, there was our own family of nine to feed. It was a busy day and Sarah planned ahead by grocery shopping around nine that morning, bringing home 48 eggs as part of the necessary ingredients, plus some extra (start the scary foreshadowing music here).

Rachel babysits for a ladies' Bible study at every Thursday morning. Sarah left around 11 a.m. to pick her up and take another girl who also babysits home. She left the groceries in the breezeway, not having time to put them away (foreshadowing music intensifies). Apparently Elijah saw her leaving and wanted to follow. Promise thought there was no harm in allowing him some playtime in the breezeway, so she let him crawl out the door. He found a way to toss forty-seven of the forty-eight eggs around the room in a pattern that pretty-well covered the floor. The odd thing was, he had evenly spread the pattern across the room without getting egg on the furniture, shoes in the rack or himself. The quote upon his mother entering the room: "I squashed it like a pancake!"

You may watch a brief video of what Josh labeled "all this carnage" if you have a fast Internet connection.

2007-01-26T20:49:00.001-06:00

Elijah likes eggs.

Theratogs Approved!

2006-12-06T12:08:00.000-06:00

Elijah's new leg-straightening straps (called "Theratogs") will soon arrive. The physical therapist was concerned that Elijah's knee might be getting damaged because the external strap merely cranks his club foot out. The new device is a garment with velcro straps worn under his clothes It puts the foot in position more gently. Some of you know that we had trouble getting them approved for payment because the device is relatively new. We think someone may have figured out that the old, clunky knee-ankle-foot orthotic would have been much more expensive (aside from being ineffective).

Elijah is practicing his walking, but his club foot still slows him down. Thank you for praying for him.

Urology appointment, orthopedic needs

2006-11-14T08:58:00.000-06:00

Elijah met with his urologist, Dr. Wolpert, on November 9 after having a renal ultrasound. We are thankful that his kidneys looked great and that his bladder is apparently responding to the Ditropan (relaxed and able to retain fluid). He has shown no outward side-effects from this medicine, for which we are very thankful.

One prayer request is that he would be able to fully empty his bladder. The ultrasound did show a little rippling at the bottom of the bladder which may or may not become a problem. Many children with the myelomenigocele form of spina bifia have to use intermittent catheterization to empty the bladder and prevent infection. God knows best and will give us what turns attention most completely to his glory, but we are asking him to keep Elijah from having to start a cath program.

The new physical therapist is working hard to get funding for Eljiah's "Thera-togs," a thin garment worn next to the skin to turn his feet into position so he can walk. His feet naturally look like this: / / when they are supposed to look like this: \ / . Elijah can now stand unaided for 20-30 seconds when his feet are straightened!

Eye Appointment

2006-10-17T18:53:00.000-05:00

Elijah had his eye appointment today in Lake Elmo, MN. We wondered if the doctor would recommend a fall surgery to correct some intermittent wandering. Instead, we were pleased to hear that his eyes are responding to the four-hour daily patching. Thankfully Dr. Schloff recommended that we try to reduce his patching to two hours daily for the next 10-12 weeks. We are pleased.

Although the little guy gives no resistance to having the patch, it must be a relief when we take it off. A prayer request is that Elijah will be prepared for his January appointment. He is scheduled for pupil dilation this time. This involves spraying a substance in his eyes. Last time this happened he was the most impolite with medical professionals we have ever seen him.

Blessings,

Steve for the family

Welcome to Elijah's new blog!

2006-10-04T09:09:00.000-05:00

Thank you for visiting. We will keep you posted here with information to help you pray as well as see how our little boy is changing. We are thankful for the good people at DCS Netlink in Rice Lake for immediately volunteering to create a website for Elijah when he was born and hosting our updates for the past 2 1/2 years.

Since we last chatted Elijah has had some highlights...

Bladder infection (treated again with antibiotics, cleared up, some chance of a false positive on the test)

Lyme disease (tick found, "bullseye" appeared clearly after only a week, treated with antibiotics, resolved immediately)

New straps to enable him to walk straight with his walker

An eye patch four hours per day to see if his lazy eye is treatable without surgery

Some things to pray about:

Elijah's October 17th eye appointment will determine whether or not he has to have another strabismus surgery.

Orthopedic surgery (tendon transfer and further tibial de-rotation) is a possibility in the spring, but we need wisdom.

Elijah's physical therapist who comes once per week is moving to Iowa (of all places), so we are praying for another conscientious helper and advisor.

Urology tests and appointments on November 9th

We hope you keep coming back. Clicking on "comments" will connect you via e-mail. If you do not want your comments published, feel free to contact us via my e-mail: pastor@ricelakebaptist.org.

Blessings,

Steve for the family