Apr 15

An article about Mackenzie in the Grand Haven Tribune

The Grand Haven Tribune posted an article they did about Mackenzie online today. Here it is:

Grand Haven Tribune Article

It says there is more in the e-Edition or in the actual paper.  We’re going to see if we can snag a copy today.  If we can, I’ll scan the whole article and post it as well.

Apr 02

Kenz was interviewed by Fox 17 today!

Here’s the interview as it aired:

I also downloaded the file in case they ever pull it.

Jul 18

Vacation with Grandma Kenny

For Mother’s Day this year we gave Grandma Kenny the gift of a vacation with her granddaughters. Originally the trip was supposed to be to Chicago but a day before we left we learned that the celebration and parade for the Chicago Blackhawks winning of the Stanley Cup was to be on the Friday that we were going to be in Chicago. The last time they won and had a celebration parade 3 million people were there. That was a few million more than we could handle so we made a last minute change and decided to head north.

We left for day one of our vacation immediately following the conclusion of Mackenzie’s Princess Camp. We drove to Mackinac City, checked in to our hotel, and headed to find some dinner.

Day 2 we started off at Fort Michilimackinac. Kenzie really enjoyed looking at the sites with daddy. The thing she seemed to like best was watching the blacksmith work.











After we finished at the Fort we drove over the bridge and headed to Sault Ste Marie for the afternoon. While we were there we took a boat tour through the locks which everyone enjoyed.


Day 3 we spent on Mackinac Island. We took the carriage tour, visited the Butterfly house and shopped before heading back to Mackinaw City so Grandma and Kenzie could do Build a Bear to end the day.




Day 4, our final day of vacation we spent heading back over the bridge into St. Ignace to buy pasties before heading home. We also spent a little time at a road side park to let Kenz have a little time to run around before making the car ride home. It was a very fun weekend for all.




Jul 18

Princess Camp

For three days in June Mackenzie attended a Princess Camp hosted by Spotlight Dance Academy in Grand Haven. For three days 20 little girls learned dances, made crafts, had tea parties, and learned to be a princess.

The first day was rough as the weather was dark and stormy which is never a good thing for Mackenzie. She hurt and didn’t really want to participate in the active portions of the camp. But by day two she was dancing and crafting with the others.

At the end of the three day camp the girls put on a presentation for family. Mackenzie was very excited that Mommy, Daddy, Paige, and Grandma Kenny were all there to see her dance. She sure does love dance!





Jul 18

15 Month Stats and Milestones

Hard to believe that Paige is 15 months old. She has definitely shown us her own unique personality as she has grown and taught us just how different two kids can develop and learn.

15 Month stats as of her 15 Month Check Up:
21 lbs, 13 oz.
30.75 inches tall

15 month milestones:
She can say Mommy, Daddy, Please, Thank You, Welcome, Bye, Doggy, Kenzie, Milk, No, Uh Oh, and most recently Nite Nite.
She can climb up on just about anything including climbing a small flight of stairs (however she sometimes has trouble getting back down from the things she crawled up on)
She can use a fork or spoon to feed herself
She is in the process of cutting her first four molars (which is a sometimes rough experience)
And the most recent achievement….WALKING!!!!!

Jul 18

Finding the right combination

After trying several different medications and combinations of medications we have now changed up Mackenzie’s meds once again.

At our last check up at U of M we stopped the Naproxen that we had tried again (the first time it spiked her liver function counts too high so we had to stop it) in hopes that this time her body would be able to handle it. It didn’t. The poor girl had terrible diarrhea from the medication so we took her off from it. And unfortunately her arthritis was really rearing it’s ugly head….she had a lot of pain, swelling, and fatigue. So the next step was to try a medication called Plaquenil. The problem with this medication is that it only comes in pill form. Have you ever tried to get a three year old to swallow a pill? Needless to say that didn’t work out.

Now we are on to our latest option, an option we had really hoped to avoid. As of two weeks ago, she is on a biologic medication called Enbrel. Some may have heard of this medication as it is regularly advertised on television with Phil Mickelson as a spokesperson. Enbrel (as all biologics are) is an immune system blocker. This now means that instead of one shot a week, she receives three shots a week over two different days. Every Tuesday she receives a shot of her Enbrel and every Friday she receives two shots, one of her Enbrel and the other is her Methotrexate that she has been on since November.

The negatives of this medication….basically Mackenzie no longer has an immune system. This is why we really hoped we wouldn’t have to go to a medication this strong (that and we really didn’t want to have to give her anymore shots). A three year old with no immune system…..not a good combination. And when we normally go to the doctor for her and start a new medication they really don’t talk about the side effects. Not so for this one. They rattled off a whole long list of them including blood problems (low blood counts resulting in less ability to fight infections, trouble stopping bleeding, and easily bruising), high rate of infection, especially respiratory and an increased risk of lymphoma and other cancers, especially for her because she is a child and she has an autoimmune disorder. Because of the highly increased risk of infection we now have to start sending out a text message or e-mail message to family just prior to family gatherings to see if anyone is feeling ill or has any type of illness (cough, cold, sore throat, sniffles, etc.). If anyone is feeling under the weather or thinks they are coming down with something we will not attend the event/gathering. It’s kind of hard to think of her possibly missing these things but the alternative of seeing her in pain in a much worse option. Also if she is sick on a day when she is supposed to receive her Enbrel injection she can’t have it because her body needs what little fighting ability it has to fight the infection and the injection will prevent that. She will be starting preschool in the fall and we already know that she will be prone to catching a lot of different illnesses there as well and will probably miss a bit of school, but it’s something she is really looking forward to so we will keep her enrolled.

The positive of this medication….it already appears to be helping put her arthritis in check. Her swollen lumps on the backs of her hands are almost gone again. She is moving better and having better days. And most of all in some cases this medication has been known to push children with arthritis in to remission which is the ultimate goal. So fingers crossed that this happens for her.

All in all she is doing remarkably well for a three year old having to cope with such a huge burden. She takes her weekly injections like a champ. She takes her daily oral medications with a smile. And even through the depression, frustration, and fatigue she still manages to smile, play, grow, laugh, learn, and help her baby sister learn to walk. She is true hero to us!

Jun 06

Our new journey…

We are quickly coming up to the one year anniversary of our start down a road we never thought we would be on……the journey with Arthritis.

Almost one year ago our daughter Mackenzie suddenly started to not feel good. It began just after her cousin Josh’s graduation party. The day of the party was hot and Mackenzie didn’t have nearly enough to drink that day and became dehydrated. The dehydration led to a horrible case of constipation that took several weeks to clear up.

Then just about the time the constipation started to clear up, she started having other problems. Most notably she was getting slower and slower getting out of bed in the morning and started to develop large lumps on the backs of her hands. The first lump appeared on her left hand and she started having trouble using her hand especially first thing in the morning. So of course we took her in to have it checked.

Jeff took her and the PA she saw did both an exam and an x-ray. The x-ray showed no sign of a break and the PA was a bit baffled and figured she must have just injured it at some point and as a just in case prescribed and antibiotic.

When the lump didn’t clear up and we were getting reports from daycare that they were seeing the same thing we went back to the Dr. That led to our first attempt at an MRI of her hand to see what could be found. On August 31, 2012 Mackenzie went in to Hackley Hospital here in Muskegon to have her MRI. Unfortunately the sedative they gave her didn’t take and they were unable to complete the test. So our next stop was to Helen DeVos Children’s Hospital on September 12, 2012. This time the test was successful.

But something we had been noticing between the two tests was that a second lump was developing on Mackenzie’s right hand. We were also noticing and so were the care givers and daycare that Mackenzie was slowly starting to retreat from physical activities. She no longer climbed the stairs, at least not without assistance. She no longer played with the other children at daycare especially if they were running, Mackenzie would just climb up in a chair and look at a book.

When the results came back from the MRI we were told it was bursitis and that it would just go away in time. Well that answer just didn’t sit right with me. After all, how could it be something that was just going to go away….it had been getting bigger and a new lump had formed on her other hand. Also from what I had learned about bursitis, it shouldn’t cause a person to lose ability with their affected area, in Mackenzie’s case her hand.

Finally after a little more pushing and prodding the Dr. agreed to make a referral to a Pediatric Rheumatologist to check for Arthritis. We were warned that the wait time to get in to the Pediatric Rheumatologist was months out and to just be prepared. Fortunately we were already acquainted with a local Rheumatologist and asked to have a referral appointment made with him just to speed up the process if possible.

So on October 12, 2012 we went to see Dr. Hylland. By the time we met with Dr. Hylland, Mackenzie had two very pronounced lumps on the backs of her hands, she was no longer able to sleep through the night, she woke up in the mornings unable to open her hands up from the fists they had curled into at night while she was sleeping, and she had pretty much completely withdrawn from any physical activities both at daycare and at home. Mackenzie loved Dr. Hylland from the start which made the exam much easier. And at the end of an hour long appointment we were given the news that Mackenzie did in fact have Arthritis, Juvenile Idiopathic Arthritis.

Because Dr. Hylland only saw a handful of pediatric patients in a year he said that he wanted to further refer us on to U of M for Mackenzie’s care. Along with the referral to the Dr.’s at U of M, Mackenzie also had to visit with an Ophthalmologist to have her checked for a condition called iritis that sometimes occurs in children with arthritis. She also needed to have some blood work done to check for the Rh factor and some other indicators plus to get a base line number for her liver functions as she was going to be starting a prescription for Naproxen and in some cases patients have a hard time processing the medication and it causes increased liver counts so regular blood work would be required.

Have you ever taken a two year for a blood draw…..it’s hard! And this was just the beginning.

Having been given the official diagnosis Jeff and I knew it was time to start making some decisions given the extent of what we knew Mackenzie’s care was going to require….doctor appointments, eye appointments, physical therapy, blood work, etc. So on October 31, 2012 I said good bye to my job at Columbian Logistics and became a stay at home Mom.

On November 15, 2012 Jeff and I took Mackenzie for her first visit to U of M. Here we met a wonderful team that will continue to direct Mackenzie’s care through this journey. We spent four hours at Mott Children’s Hospital in the Rheumatology Department. At the end of the day we walked away knowing for the next four to five years we would be giving Mackenzie a weekly injection of a medication called Methotrexate (an immune suppressant) and a high powered pain reliever to help her sleep through the night.

Since that visit seven months ago we have been back to U of M twice, once with good results and once with so so results. We have been successfully giving Mackenzie her weekly injections and have stopped the Naproxen and are currently on to trying a new medication called Plaquenil. The problem with this latest medication is that it is a horribly bitter pill that she can’t chew so she needs to learn to swallow a pill….at three years old. That is not going well.

The lumps are back on her hands after having been gone for several months while she was taking a steroid. We had to stop the steroid in March because long term use has long term side effects that we and her Dr.’s did not want to risk. Today Mackenzie is not sleeping soundly and is need of some relief. Hoping that we can either figure this Plaquenil out or come up with an alternative.

It’s been a long year’s journey and as I said earlier…..it’s just beginning……

Jun 05

New site…

We want to revive this site. So, I’ve started a new instance of WordPress. We’re still settling on a theme. Some of the old posts may come over, most won’t.

Stay tuned!

Jan 01

Awesome punch recipe

This originally came from Taste of Home. I’m posting it here for my archival purposes.

Sparkling Cranberry Kiss
Recipe type: Drinks
Prep time: 
Total time: 
Serves: 12 servings
This is a great punch, even if you don't like cranberries or ginger ale.
  • 6 cups cranberry juice
  • 1-1/2 cups orange juice
  • 3 cups ginger ale
  • Ice cubes
  • Orange slices, optional
  1. In a pitcher, combine cranberry and orange juices. Just before serving, stir in ginger ale; serve over ice. If desired, serve with orange slices.

Dec 31

My current favorite dill pickle recipe

This recipe originally came from Wood Ridge Homestead. I’m posting it here for my own archives.

Crispy Dill Pickles (Just Like Klaussens)
Recipe type: Canning
Serves: 4 pints
They taste just like the Klaussen pickles. The cucumbers can be spear-cut, sliced, or cut in chunks use what you have. One of the secrets to making crispy dill pickles is to cold-pack the pickles in hot, sterilized jars. The other secret is to time the water bath precisely. You will need about 16 4-inch long cucumbers, or 12 large cucumbers that can be chunk-cut or spear-cut.
  • Cucumbers (see above description)
  • 12 large garlic cloves, peeled
  • 4 heads fresh dill
  • 2 hot red peppers or 1 t. crushed hot red pepper flakes
  • 2½ cups white vinegar
  • 2½ cups water
  • ¼ cup pickling salt
  1. Prepare canning jars and lids (wash, then sterilize).
  2. Chill the cucumbers in a refrigerator overnight if possible. Remove when you are ready to begin cold-packing the cucumbers in the jars.
  3. Wash the cucumbers to remove any debris or garden soil. Leave the small ones whole; with larger cucumbers, cut in chunks, spears, or slices. Pack the chilled cucumbers into 4 sterilized pint jars. To each pint, add 3 whole, peeled cloves of garlic, 1 head dill, and ½ hot red pepper (or ¼ t. pepper flakes).
  4. Make the brine: Mix the vinegar, water, and pickling salt in a stainless steel saucepan and heat to the boiling point. Pour hot brine over the cucumbers in the jars. Seal and place in a boiling water bath for 5 minutes, marking the time as soon as you put the jars in. If you leave the jars in the boiling water bath longer, they will get soft.
  5. Store processed pickles for several weeks before using.