“The Rabbit With Epilepsy” ~ January 21, 2015 ~ Day 21

Posted by danaandtammy on Wednesday Jan 21, 2015 Under Daily Life, Kenny's Health

Today we got to come to school for “Mystery Readers” and listen to the book, “The Rabbit With Epilepsy.”  A very nice lady from the Epilepsy Foundation came and read it to your class.

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First seizure at school ~ January 8, 2015 ~ Day 8

Posted by danaandtammy on Thursday Jan 8, 2015 Under Daily Life, Kenny's Health, Kid Pictures

The dreaded call came from school today.  You had your first seizure at school.  They called 911 and Dad and I drove as quickly as we could in the snow storm to school. Because you were awake and talking when I got there the paramedics said we could bring you to the hospital.  Since it was such a little seizure I’m not sure why we went to ER other than that is what the EMT recommended we do.  Up until a month ago you only have had seizures when you are sleeping so today was your second daytime seizure.  We had the most amazing and caring ER doctor (Dr. Cook)!  He didn’t do any special tests but probably talked to us for over 30 minutes! I never would have imagined that an ER doctor would be so knowledgeable on pediatric neurology.  I wish he was our neurologist!  You were so brave through all of it!

 

Here we are leaving the hospital.

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Before moving to Wisconsin I had never heard of “snow days” just for being too cold.  Today was one of those days.  The high today was -5 with a windchill of -40! With no school Emma spent the day with her good friends baking and crafting.

Kenny, Dana, and I spent our day in Marshfield for Kenny’s neuro. psych appointment.

My sweet buddy – I sometimes wonder what you think of all your doctor appointments or what it feels like to have a seizure or to realize that your left hand doesn’t work quite as well.  At 4 months you were officially diagnosed with Unilateral Closed Lip Schizencephaly after a MRI revealed you have a little cleft or crevice in the right side of your brain.  We had no idea what that would mean for you but you continue to amaze us with all the things you are able to do.  You are currently on Keppra for your seizures but the doctor is still trying to find the right dosage for you to hopefully become seizure free.

 

Today was just a check up to monitor your progress.  The doctor said everything looked good!

After we got back in town you joined in with the fun and helped make your frozen dessert.

Here are some of Emma’s creations from the day.

 

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With such a warm winter day in Wisconsin it was the perfect day for you guys to try out your new snowboards from Christmas.  Grandpa and Grandma Fish really have the ideal land for it at their house in Red Wing.  You both really seemed to get the hang of it quickly.

Kenny – You got pretty tired out after a couple runs but as a kid with mild cerebral palsy you were AMAZING!  We are so proud of your hard work and determination.

You might have fallen asleep if we stayed much longer!

Here is a video we posted on You-Tube from the day.

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Our Boy Can Bike

Posted by danaandtammy on Tuesday May 24, 2011 Under Kenny's Health, Kid Pictures, Photographs

Kenny has had a lot of interest in his bike the last few days and with some help he could kind of keep his feet on the pedals and move them a bit. Well today he hopped on the bike and just took off. Tammy actually called me at work with a quiver in her voice as she explained in a message that he was biking all by himself. Now God has done some amazing things with Kenny’s health, but there are always those concerns about will he be able to do that “next thing.” Well Kenny and God just continue to surprise us and that is reason to celebrate.

This is a non-action shot so he had a chance to smile for the camera. Check out his new helmet. It is actually a youth sized helmet because the child sized (ages 3-7) was too small for his big head.

The look on the his face is much more focused as he is powering the pedals.

This is his “I don’t dope and I’m still fast” look.

 

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Making a Gingerbread House

Posted by danaandtammy on Sunday Dec 19, 2010 Under Holidays, Holidays, Kenny's Health, Kid Pictures, Photographs, Special Events

Lots of fun. Lots of mess. Lots of sugar.

The candy in this picture is significant. A few hours after making the house, Emma tried to put one of these little candies into Kenny’s mouth while he was laying down. Somehow the candy ended up going in his nose. We almost got to the point where we thought we would need to go to Urgent care, when a strong external push shot the candy out of his nose. The whole time sister Emma was much more concerned than Kenny.

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Saying Good-Bye to PT and Starting ST

Posted by danaandtammy on Wednesday Jun 30, 2010 Under Kenny's Health, Kid Pictures, Photographs

Kenny has been receiving physical therapy, occupational therapy, and therapy from our chiropractor pretty much since his diagnosis just over a year ago.  Recently we started Speech Therapy;  it’s not a major concern, but he is a little behind.  Things have progressed so well that as of today Kenny has reached his physical therapy goals so with this we say good-bye to Kenny’s PT Beth. She worked so well with Kenny and was always a source of reassurance for Tammy and me.

With regards to OT, Kenny works with a great therapist named Mary (we will have to get a picture of her soon). A few weeks ago Mary had us attend a special week of intensive therapy with a lady named Sheryl Field who specializes in a technique called the Feldenkrais Method. Kenny’s OT will continue the therapy with him on an ongoing basis. The therapy was great and helped Kenny’s fisted left hand to relax more.

Kenny with Miss Beth.

Kenny with Miss Sheryl.

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Kenny’s Last Night of Nursing

Posted by danaandtammy on Saturday Apr 24, 2010 Under Kenny's Health, Kid Pictures, Photographs, Special Events

Kenny turned 1.5 today. We’ve been working towards it this week and with tonights feeding Kenny is officially weened. Since Kenny has no idea it is happening, he seems to be fine with it. Tammy on the other hand is going to miss it. With Kenny weened, Tammy can get back on some of the medication that she has been off of for about 5 years that can help with her fibromyalgia.

Ever since we found out about Kenny’s left hand, nursing has been a time for some massage therapy. Tammy would massage and rotate his left arm and hand. We may never know how much this “therapy” has helped with his development.

Afterwards Kenny was in great spirits (he has no idea that anything is different). He had to pull off his mom’s glasses one more time as that is usually part of the nursing ritual.

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Our Sick Boy

Posted by danaandtammy on Saturday Jan 30, 2010 Under Kenny's Health, Kid Pictures, Kid Stories, Photographs, Stories

Kenny had a fever of 104 yesterday, but then this morning he seemed to be doing a lot better. After his afternoon nap his fever was back up to 103.8. We decided to go into Urgent Care to get him checked over. The doctor could see that his throat was quite red and with white “junk.” He hoped that it would be strep throat so we could get him some antibiotics and be done with it. The strep test came back negative though. We left urgent care just with the explanation that it was a case of viral tonsillitis. After his afternoon nap his fever was back up and this time 104.9, so we called the on call pediatrician. Her diagnosis over the phone is that Kenny most likely has mono. High fever and sore throat with white secretions are pretty telling when it comes to mono. So the plan is just to keep him as comfortable as possible with ibuprofen and if anything changes to go back to the doctor.

Right before bed Kenny was actually doing a little bit better after a fresh dose of ibuprofen. He let us put a baby wipe on his forehead to help him keep cool.

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A Tale of Two Parties–Party 1

Posted by danaandtammy on Saturday Oct 31, 2009 Under Birthdays, Kenny's Health, Photographs, Special Events

Kenny had two birthday parties. The first one was with his friends on the night before his actual birthday. We got the house all decorated in the African Animal theme as you can see in this first picture.

Kenny just loved looking up at his big lion ballon.

For this party, we just had cupcakes. Emma helped Kenny blow out his one candle.

As you can see in the background, about 3 inches of snow is on the ground. Hope that doesn’t happen to often on Kenny’s birthday.

We tried to get a perfect picture of all the friends, but sometimes you take what you can get. This actually was the best one that we took.

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Kenny Turn’s One on Saturday

Posted by danaandtammy on Sunday Oct 18, 2009 Under Kenny's Health, Kid Pictures, Photographs

In less than a week Kenny turns 1. This year has certainly been hard at times with the uncertainty of Kenny’s  health issues, but it has been a good year.  We have hope and peace in God’s faithfulness, and celebrate at the miracles that have already happened!  Psalm  139: 13-14 “For You created my inmost being; You knit me together in my mothers womb.  I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.”

On a lighter note, since we are anticipating that there won’t be any more sunny and 60 degree days before next Saturday, we went out and took his official one year photo today. His first year frame is now complete.

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Kenny is a Crawling

Posted by danaandtammy on Wednesday Sep 30, 2009 Under Kenny's Health, Video

Kenny is crawling. He just started yesterday. Another little miracle in this journey of closed-lip schizencephaly.

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Kenny’s Left Hand–An Update at 10.5 Months

Posted by danaandtammy on Monday Sep 7, 2009 Under Kenny's Health

Most of you know about Kenny’s diagnosis with a brain defect (closed-lip schizencephaly). If you need any of the history you can see our other blog posts related to Kenny’s health. Since the original diagnosis the only apparent symptom that Kenny continues to manifest is problems with his left hand. Everything else developmentally has occurred pretty much on schedule. He isn’t crawling yet, but Emma was a late crawler also and Kenny is very close. Well over the summer Kenny had physical therapy, occupational therapy, and usually two chiropractic appointments every week. We were able to see a lot of progress in just his awareness of his left hand and then more. Since it has been such a gradual process it is sometimes hard for us to really be in awe of what God has done with Kenny. His lack of function in his left hand was so obvious as a 5 month old that we took him to the hospital. He has spent most of his time with his left hand in a fist, but (and for any other 10 month old this wouldn’t be a big deal) he now can do this…

Link to video here

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Day at the Hospital

Posted by danaandtammy on Monday May 11, 2009 Under Kenny's Health

It was another interesting day with Kenny and it did involve about 7 hours at the hospital. We are home now, he is relatively happy, and has a temp of 98.6. So things are good.

What did happen was a temp yesterday and then again today (as high as 104.1). We had a scheduled appointment with our doctor. The first concern was his left testical. He was born with extra fluid in his scrotum, which is called a hydrocele. There was extra swelling today and the concern was that one of the blood vessels might have gotten pinched off. Kenny was scheduled for an emergency ultrasound, but thankfully nothing additional was found wrong and that it probably was all of his crying that forced more fluid into the scrotum.

So with that not the problem we went to the lab where they had to take blood via a vein. Both of our children have Tammy’s small veins and Kenny was a little dehydtrated so getting the blood was not very easy. It officially only took one poke, but quite a lot of “digging” around before the lab tech finally hit the mark. (Emma once had this done as an infant and it took four lab techs and I think 5 pokes to finally get blood). They also needed to collect urine and since Kenny has yet to master peeing on demand, they had to stick in a catheter to collect the urine. Let’s just say his private parts just need a few days to recover after all they went through today.

Back to the doctors office to wait as the results slowly came in. Blood count–white blood cells slightly elevated.  Urine sample–no urinary tract infection.  Kenny crying and moaning for 3 hours and wouldn’t eat.  With all this info and no cause of the fever and the ovious pain, the doctor decides to do a spinal tap to rule out menengitis. Spinal tap takes two pokes but finally gets a good sample. More waiting for results, but as we wait Kenny eats and actually starts to get happy.

Trying to make a long story short. There are two criteria for bacterial menengitis–elevated glucose and proteins in the spinal fluid and elevated white blood cells in the spinal fluid. Kenny has the elevated white blood cells, but not the elevated glucose and proteins. As a result the doctor thinks that he probably has a mild case of viral menengitis (not nearly as dangerous as bacterial menengitis). As a precaution Kenny was given two injections of antibiotics in the small case that it is bacterial menengitis. We are home and Kenny continues to be in pretty good spirits and like I mentioned his temperature is normal. We go back to the doctor tomorrow to make sure everything still looks good. But for now we will be Praising God that will all the bad things that could have been wrong, we have a son that seems to be getting better.

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Update on Kenny

Posted by danaandtammy on Thursday Apr 23, 2009 Under Kenny's Health

We’ve seen two neurologists and a chiropractor this week with Kenny. We’ve learned some more, both good and not so good. Officially Kenny has what is called Unilateral Closed Lip Schizencephaly. This basically means that he has a cleft (crevice) in the right side of his brain where he isn’t supposed to have one. Also surrounding this cleft he has Polymicrogyria. Your brain has normal bumps (gyria) and indentations (sulci), but if the bumps are too small and thus too numerous you have polymicrogyria. So that is what Kenny has.

So what does it all mean? First he probably will continue to have problems with his left arm and hand. We will be working with a physical therapist and a chiropractor and hopefully there will be improvement. With regards to other motor skills, language, learning, etc. we won’t just don’t know what will happen. The only other major concern at the moment and for the future will be seizures. They are very likely with Kenny’s situation. Most seizures don’t affect one’s overall health, but you can pray about a type of seizure that only occurs before the age of 1 that can cause major health issues. Kenny hasn’t had any seizures yet and we are just praying that that will continue.

So what are we encouraged by? Well, we know a big God and we are thankful for him giving us Kenny and that Kenny in his hands. We (and the doctors) are encouraged by Kenny’s big head. He is in the 97th percentile for head size and big brains with problems are lots better then small brains with problems (these weren’t the doctor’s exact words J ). Kenny’s good nature and alertness are also good things. He reacts to the world around him just as well as any baby his age. Kenny is now sitting—that’s good. I guess to just sum it all up instead of going over every detail…both doctors said that he is normal from the outside except for his left hand.

Pray that we will take one day at a time. That we will cherish Kenny as a gift. That we will entrust him into God’s hands. That we will live with peace and not worry.

Thanks for reading, for your kind words, and your prayers.

The Swanstroms

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