The Donalds

MDA Clinic appointment (8/25)

2009-08-26T07:15:00.000-07:00

We saw the doctor at the MDA clinic yesterday and she was on board with trying to figure out a definitive diagnosis! She wants us to come to her office in Lansing for some specialized nerve testing. I'm glad we are moving forward with this, but not super excited about the tests because she described it as electrical shocks through a needle in my arm for 45 minutes... but hopefully it will help us to get a diagnosis and figure out what is causing these issues! We don't have the dates for that testing yet, but I'll update when we do. She also said I should continue my supplements during this time and that they should not affect the test results. (thank goodness!)

Thanks for all your thoughts, prayers and support!

Anni :)

Upcoming appointment - MDA Clinic

2009-08-24T10:35:00.000-07:00

Hi all!

Just wanted to remind you all of my upcoming appointment at the Muscular Dystrophy Clinic tomorrow afternoon (8/25). We will be seeing a different doctor and will hopefully schedule further testing to get a definite diagnosis. I have felt amazing throughout the past few months with only a few days where I have had problems. I will post updates as soon as I know anything! Thanks for keeping me in your thoughts and prayers!

Anni

Good news!!

2009-06-22T09:22:00.000-07:00

Hi all! I'm writing today to let you all know that I (Anni) am feeling so much better!!!! :)

The doctors have made a probable diagnosis of a metabolic myopathy (not sure which type) and will be doing further tests to confirm at the end of August!

I started feeling better about the second to third week of May (after treatment with supplements) and have not had significant problems since then, so the doctors are very hopeful that I will be back to my normal self with a simple combination of vitamins each day!

Since mid-May, I have been able to do many of the things I never imagined I would be able to do again like rock climbing, biking, running, camping and participating in all the other sports and outdoorsy stuff I love. My doctor has also cleared me to begin working again!

Being ill has been very challenging, but I have learned so much about myself and where I need to change. I know I will be a better person because of all that has happened. I'll continue to keep you all posted as new information comes in!

Have a wonderful day!! :)

Anni

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

New recommendations from local neurologist

2009-04-27T11:42:00.000-07:00

Our appointment with Dr. Lewis, a neuromuscular specialist from Wayne State University, was on April 22. Dr. Lewis basically recommended that we start over from scratch and repeat all testing with a local neurologist. We were kind of bummed, but he made some suggestions, which he passed on to local neurologist Dr. Landan.

Our appointment with Dr. Landan was on April 27. He suggested possible diagnoses including: metabolic myopathy, normokalemic periodic paralysis, and seronegative myasthenia gravis. Dr. Landan also mentioned that the thyroid medication Anni is taking could be causing this and will check into switching to a natural vs. synthetic supplement if the other diagnoses are ruled out. In order to rule out these illnesses, Dr. Landan will give doses of medications normally used to treat them. We will know we are in the correct area if the episodes no longer continue. It is a little bit backwards, but we think it is a lot better than what we have been doing. (nothing).

The first diagnosis on his list to rule out is a metabolic myopathy. Treatment is basically taking a few vitamin supplements each day. Anni will be starting the treatment as soon as we get the vitamins this week. If it works, a definitive diagnosis can be made with a muscle biopsy. We should know within a few weeks whether or not it is working and we will update again at that time.

Thanks for all your love and support!

P.S. Jon will start working full time at the church starting May 1st!!! :)

Neuromuscular Specialist

2009-03-21T16:51:00.000-07:00

The neuromuscular specialist appointment is scheduled for April 22 at 10:30am.

Hope everyone is enjoying the beautiful weather!

Heading in the right direction?

2009-03-09T19:21:00.000-07:00

Hello friends and family! Just wanted to update you all on the most recent appointments for Anni's health issues:

MDA Clinic follow up: Dr. Yan does not believe that this problem is caused by periodic paralysis because Anni's potassium levels remained within the normal limits during the episodes. Dr. Yan also told us that she is moving out of state and will no longer be following our care.

Wayne State University - Neurology: Even though Dr. Rajamani asked us a lot of questions and did a very thorough job, he was still stumped over what could be causing this. He wants us to come back to Detroit for an appointment with a neuromuscular specialist. We do not have a date for this appointment yet, but we will keep you posted.

We hope to have more information soon! Thank you for all your support!

Insurance Issues & Upcoming Appointments

2009-01-27T00:59:00.000-08:00

Hello friends and family! Time for a little update as a few things have changed.

1) Our U of M appointment scheduled for Wednesday (Jan 28th) has been cancelled due to insurance issues. They will not cover this appointment because U of M is not within our network. The insurance company said that we must go to Wayne State University before they will cover anything out of network.

2) The soonest they are able to get us in at Wayne State University is March 3rd. The appointment is scheduled at 4:00pm and is in Detroit, MI.

3) We also have a follow up visit at the Muscular Dystrophy Clinic (Grand Rapids, MI) on February 24th. The doctor at the MDA clinic believes that these symptoms could be caused by a form of periodic paralysis. She has been working with us since November to try to diagnose or rule out this possibility.

4) Anni's long term disability claim is under investigation due to lack of diagnosis. They have requested further documentation, but have said that it is unlikely to be approved without a diagnosis.

5) We are trying to start a small vinyl sign business out of our home to make a little bit of extra income. If you or anyone you know may be interested, please see our website:

http://www.lakeshorevinylexpressions.com

We are trying to remain patient and persistent during this time of unknowns. Thank you all so much for your concerns, support and prayers during this time. We appreciate you all very much!

"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." - Romans 8:28

Christmas & Winter Pictures

2009-01-26T20:57:00.000-08:00

Katelyn opening presents

Camping in her new princess tent

Donald Family Christmas 2008

Jon, Anni, Katelyn and Ella

Playing in the snow

Test results

2008-12-03T12:19:00.000-08:00

After the testing at the neurologists office today, we don't really have anything new to report. The nerve conduction and EMG testing came back normal, just as it did last time it was performed. The doctor still wants to see Anni when she is having a very bad day to do further testing for periodic paralysis. However, the new plan is to monitor good and bad days. The doctor wants Anni to keep a journal of all she does and everything she eats and drinks to see if there is some kind of trigger or pattern that we are missing. Our next scheduled appointment is January 28 with the neurologists at U of M (Ann Arbor, MI). We'll keep you posted if anything comes up before then. Thank you so much for all your concerns and prayers!

MDA Clinic Visit

2008-11-26T08:39:00.000-08:00

Anni had her appointment at the Muscular Dystrophy Clinic yesterday. The doctor talked with her to get a health history and performed an assessment. After performing a few simple tests in the office, the doctor said she felt that whatever was causing this was very rare and that at the very least, she would make referrals to the doctors at U of M or Chicago. She also wants to have Anni back for testing next week Wednesday (Dec. 3) to do more complex testing. This testing will include an EMG, nerve conduction study, muscle biopsy and blood work. So although we did not get many answers, we are still moving in the right direction. We'll update again after we get test results... Thanks to everyone for your support! Have a Happy Thanksgiving!

Halloween 2008

2008-11-18T12:45:00.000-08:00

Katelyn was a lion for Halloween this year.

We visited Grandma Donald at work

Then we visited Grandpa Hanes at the fire station

She loved the lights and sirens....

We also stopped in to see Grandma Hanes at work so she could get a few pictures. Then we headed back to our church for trunk or treat. Since Katelyn was a lion, we were Lions fans...

It was a very fun day, but Katelyn was exhausted by the time we got home...

Sorry for the delay in posting these... Hope you enjoyed them!

Upcoming appointments

2008-11-15T13:49:00.000-08:00

Up Next:

Tuesday, November 25th, Anni will be going to the Muscular Dystrophy Clinic in Grand Rapids for an evaluation. The appointment is at 11:00 am. At this appointment, the doctors will evaluate her for all types of muscular dystrophy. Hopefully this will be an appointment where we rule a lot of things out, but we also know there is a chance that this could be what is causing the problems.

Long term plan:

After talking with the doctor earlier this week, he decided it would be in our best interest to try again for an appointment at Mayo Clinic. Earlier this fall, our old PCP tried to set up an appointment for us, but our new doctor said the report that was sent was very "vague". Our new doctor also said that he could write a much more thorough report based on the assessments he had performed and the reports he had received from other specialists. So our plan right now is to try again to get an appointment at Mayo.

Thank you all so much for your concerns, prayers and help! We appreciate you!

Health Update

2008-11-12T08:57:00.001-08:00

As many of you already know, Anni has been having some pretty serious health problems lately. We thought it might be easier to keep people in the loop by updating our blog with new developments.

For any of you who don't know what has been going on, here's a brief history:

About a year ago (late November), Anni started having problems with weakness and numbness in her arms and legs. It started pretty minor (having trouble opening baby bottles, etc.), then progressed to difficulties walking (needing to lean on a shopping cart to get through the grocery store). By late December, she went on medical leave and started having medical tests. They did blood tests for many things including all forms of myasthenia gravis. They also did an MRI of the brain and the entire spine to check for multiple sclerosis and transverse myelitis. All tests came back negative. Anni was able to go back to light duty work at the hospital working as a secretary and helping her manager with projects. The symptoms remained through the end of February, then began to taper off. She was able to return to work full strength in March. After a fairly uneventful summer, Anni's symptoms returned without warning at the end of July. She immediately went to light duty work and continued that until the beginning of September, when she began having serious trouble driving. She has been on medical leave ever since. The symptoms this time around have been much worse and have made it difficult to walk more than a few steps at a time. Anni has started using a walker on bad days so that she is able to get around the house. Our new doctor in Muskegon has been wonderful. He recently did tests for lyme disease and periodic paralysis. Both tests came back negative. However, he also started Anni on a dose pack of steriods, which has helped tremendously. This past week has been much better and will hopefully continue to stay that way.

Thank you all for your prayers, concerns and help during this time. We appreciate it VERY much!

Also, I'm pretty sure we lost the camera cord during the move.... We have a whole bunch of pictures on the camera just waiting to be posted as soon as we find it! :)

Up and running!

2008-10-15T12:35:00.000-07:00

We have the internet again!!!

We are starting to get settled into our new house. THANK YOU to everyone who helped us move, clean, paint, etc. We could not have done it without you!! Hopefully we will be able to post pictures as soon as we get the digital camera working again...

Moving this week...

2008-09-24T18:32:00.001-07:00

Hey everyone! We are moving to Muskegon this weekend. Just wanted to let people know that I may not update this for a few weeks because we won't have internet for a while... Let us know if you want to help! :)

Happy 1st Birthday Katelyn!!

2008-09-14T20:11:00.000-07:00

Our baby girl turned one yesterday, September 13, and we cannot even believe it! She is such a beautiful, smart, talented genius and we can't imagine our lives without her...

We love you "peanut baby"!! :)

Love, Mommy and Daddy

Looking at all the awesome presents!

"I'm ready for my cupcake!"

Dig in, peanut!! :)

Okay for real this time...

2008-09-14T20:08:00.000-07:00

After four attempts at buying a house, we finally have a home! Apparently the fourth time is a charm... All we have to do is close now, and we are hoping to do that within the next week or so. The house is in Muskegon only a few minutes from our church. It has 3 bedrooms and 2 baths. It also has an oversized attached garage and a privacy fence around the large back yard. It needs a little bit of updating (mostly paint and floor coverings), but is very clean and in move in condition. We are very excited to move!! We are putting over 100 miles on our car on Sunday's and that is fairly unaffordable with gas prices the way they are... Plus, it will be nice to move to the community where we are serving!

Nevermind

2008-09-08T13:59:00.001-07:00

We didn't get the house because the guy who owned it decided not to sell... Oh well. We found a different house in Fruitport that we like too. We should find out sometime this week, so hopefully this one goes through without a hitch...

And so it begins...

2008-08-28T10:28:00.000-07:00

We are going to be buying a house in Muskegon! It is about 2 minutes from the church where Jon works as a youth pastor and very close to The Lakes Mall. It is in Fruitport school district and looks like it will be very accommodating for our family. It has 3 bedrooms, 1 full bath (with room for a second bath in the master bedroom), a 2 stall garage (detached) and a nice patio area with a basketball hoop. The layout of the house is perfect and it has a lot of character (like a black toilet and black pedestal sink... haha). And it's on about an acre of land! We are very excited! We are tentatively planning on moving in around the week of November 10th. Just hoping everything falls in to place....

I am awful at blogging

2008-07-26T17:11:00.000-07:00

So Jon just brought up our blog page and rubbed it all in my face that I haven't updated in a VERY long time. So in case anyone still looks at our page for updates, here are a few things you have missed since last November.

November 2007 - Katelyn wins Allendale's Most Beautiful Baby Pageant

December 2007 - Katelyn's 1st Christmas

January 2008 - Welcome cousin Caleb Jonathan Hanes (Ben & Kara's son)

Winter 2008 - Snowmobiling up north with Grandpa Hanes

Spring 2008 - Katelyn and Caleb's 1st Easter

Summer 2008 - Katelyn goes to the beach

I will (hopefully) try to be better about updating this page... so seriously, check back often! :)

Hello friends & family!

2007-11-16T11:10:00.000-08:00

Well it looks like you found us! Hopefully this will be a more convenient way to stay in touch so that we don't have to use "snail mail"... We will try to update monthly, so make sure you bookmark the site and check back often!