My "yearly" update (grin)

Here is an update.  It would be an understatement to say that it is time!!    A year has gone by since many of you have heard from me on xanga.  I have however faithfully read many if not all of your posts and occasionally commented so that should be worth something.    Whew!!  Where do I even start to catch you all up on the last year of my life??!  If any of you need a drink or a potty break or anything like that you better take care of that now because I suspect that this could get lengthy.   

I will start by updating you all on Mariah who turned five in March.  My last post was right after we had started Mariah on the Ketogenic Diet.  (If you need the background read my May 13,2007 post).  We were at the University of MN Children's Hospital for four days while Mariah's body made the adjustment to the diet and while we learned what all would be required to keep her on the diet.  It was a lot of information to take in but our time there was very good for the most part.  All the staff at the hospital were wonderful and we felt very blessed to be there.  The next three months were spent "doing the diet".  It was very very detailed  All food that entered Mariah's mouth needed to be calculated and weighed.  Mariah needed her urine tested daily to verify that she was in "ketosis".  There are far too many details to even begin to write them so I will attempt to condense.  The summer went well.  Mariah had a good summer.  She enjoyed being outside and in the sunshine.  She was happy and alert.  The diet itself went well.  She did not resist the food very much at all.  We made many adjustments as a family to make the diet work for her and gave it our "all".  But in spite of our best efforts we saw no reduction in her seizures and so three months later (after the doctor and an EEG confirmed what we already knew), we took her off the diet.  We knew that we have given it our "best shot" having done things as perfectly as we knew to do them.  I am really glad we tried because otherwise I would always wondered "what if".  Since then it has been another round of trying this medicine and that medicine....all with relatively little benefit.  Mariah has her better days and her not good days.  Late Fall and Winter were especially bad with days on end of grogginess and generally just being "out of it".  When she did have a good day it was such a joy.  She is a precious sweet little girl and we love her immensely.  This latest trial of medicine she has been on since January and we have gradually been increasing the dosage to get where we are today.  We are uncertain as to whether there has been any benefit.  She continues to have many seizures every day...always upon waking and at various other times.  Mariah seems to do better on sunny days when she can be outside and mobile.  Unfortuately it continues to snow and so we are all very very anxious for summer weather!!   

For the last year I have had PCA's (personal care attendents) who have been able to assist with Mariah's care.  This has been the HUGEST blessing to our family.  Anyone who has a child with special needs will relate to the stress it can cause within the family.....not because they are a burden but just because it takes so much energy and time and can become all consuming.  It can at times be very difficult to balance all the other needs within the family when one family member needs so much.  I was able to hire several family friends to fill this position and again I have to say what a blessing from God this has been!!  Having help enabled me to know that Mariah was safe and being cared for while at the same time allowing me to accomplish the day to day things that needed doing.  It is also important to carve out time for Milt and for Shelby and having additional help has made that easier as well.  Mariah has attended preschool four afternoons a week this school year and I was able to send my friend (and pca) Carita along to school with Mariah since she requires one on one care.   We are so grateful for the resources that are available to us through the school district and for the knowledge that the special education director has. 

So life rolled along in somewhat of a routine until late September/early October when we hit another "bump" and everything slid to a halt.  Well it didn't halt right away but life got increasingly difficult for me.  Like I said earlier, Mariah went through months were she slept much of the time and even when she was awake she was groggy and vacant.  I spent hours every day sitting in the recliner holding her while she slept, woke, had seizures, slept, woke, had seizures, etc.  From October on, the hours that I had a pca were not covering much more then school time and so things around the house here got very out of control.  Those of you who really know me know that is a very very bad feeling for me.  I would try to do what I could while Mariah was at school because I knew that once she got home I would be holding her again.  The employee that we had at the shop left for a term of VS in November and so MIlt was once again on his own at the store working six day a week which made him unavailable for any extra time here at home.  While I didn't really come to grips with this fact until late December I was struggling with depression which was a whole new thing for me.  I had experienced bad days like we all do but then the good days would come again and so months of "bad days" were a new thing for me.  One friend finally put my struggling expression of how I was feeling into perfect words for me.  She said "it's like all the color has gone out of your life"....and I said "exactly".  I felt so sad ALL the time and my energy was at an all time low.  Fortunately I have many great friends in my life.  One set of friends I meet with weekly for what started as a Bible/Book Study but has turned into more of a prayer group.  These wise friends saw that I was not myself and strongly encouraged me to seek medical help and not only that.....they prayed!!  December was a particularly difficult month with me feeling like I drug myself through each and every day.  I finally talked to my doctor who is also my friend and she agreed that I had all the symptoms of depression and went on to assure me that I had a lot going on in my life for the last 2 1/2 years with Mariah's care, etc.  She gave me some information on some anti-depressants and around Christmas I agreed to give them a try.  While I had always been SO supportive of various friends who have needed such help when it came to myself it was a different story.  (Double standard I know)  I really didn't expect it to help but about five weeks later I realized that I was no longer dragging around and that the color had come back!!!!!  I am thankful for prayers, friends, and meds!!    March was good and April was better and May is starting out fantastic (except for the snow).  If you want more in-depth info regarding some of this stuff you can message me.    Anyways.....so that is the Mariah part of my life. 

Shelby is seven and a half and almost done with first grade.  This picture was taken on her first day of first grade.  She has had a wonderful teacher this year who I admire immensely for her ability to competently handle 24 first graders and all their different needs and strengths.  Shelby continues to be "fully alive" at all times.    She is energetic and dramatic and keeps us on our toes.  She loves to spend time with her Grandparents (my parents).  She is a delight (most of the time) and is looking forward to summer.  I wonder if she will make it through the summer with no broken bones?  She likes her bike and the trees.....the higher up the better.  sigh    She also enjoys being up at the store with her Dad and "helping" or creating all manner of crafts out of scraps that she finds there. 

Milt is.....great.   I am very grateful to have him in my life!!  He continues to work hard at the store and then to come home and do what needs doing around here.  I love him.    Milt and I very spontaneously took a short trip to CA in early April.  We had SUCH a good time.  Our friends the Witmers moved out there and so we surprised them by going out to see their home and help them unpack.  We arrive in LA on Friday evening and were back home on Wednesday morning so it was a fast trip but just really really enjoyable.  Milt and I had a couple days to ourselves before surprising the Witmers with our presence.  We enjoyed driving by the ocean, walking on the beach, shopping, eating out, and just generally being together.  It was great. 

Currently Listening First Hand By Steven Curtis Chapman Hiding Place see related

Hiding Place

Hi Friends!!  I know it has been awhile....and I have a "newsy" post almost ready....but wanted to post this song first.  I know it is old....but I still like it alot and kindof speaks to the journey that my heart has been on the last while.  God is good...all the time. 

In the distance I can see the storm clouds coming my way,
And I need to find a shelter
Before it starts to rain,
So I turn and run to you Lord;
You're the only place to go,
Where unfailing love surrounds me
When I need it most.

You're my hiding place;
Safe in your embrace,
I'm protected from the storm that rages
When the waters rise,
And I run to hide;
Lord, in You I find my hiding place.

I'm not asking You to take away
My troubles, Lord,
'Cause it's through the stormy weather
I learn to trust You more.
So I thank You for Your promise;
I have come to know
Your unfailing love surrounds me
When I need it most. 

So let Your people seek You
While You may be found,
'Cause You're our only refuge
When the rain comes pouring down.

Currently Listening Let the Praises Ring: The Best Worship Songs of Lincoln Brewster By Lincoln Brewster Everlasting God see related

Strength will rise as we wait upon the Lord
Wait upon the Lord
We will wait upon the Lord
Strength will rise as we wait upon the Lord
Wait upon the Lord
We will wait upon the Lord
Our God You reign forever
Our Hope our strong Deliverer

You are the everlasting God
The everlasting God
You do not faint You won't grow weary
You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles

You are the everlasting God
The everlasting God
The everlasting God

I really really really like this song.    In fact.....as we drove to the Cities a few weeks ago to initiate Jo on the Ketogenic Diet I felt like it was MY SONG.  I heard it countless times on the way there and after we got into the hospital I immediately turned the radio in our room onto one of the local Christian radio stations and heard this song play often.  I continue to claim the promises in this song. 

A "real" update will come soon.....I hope.  In short....things are going well.....more details later......

Pressing over me like a big blue sky
I know someone has me on their heart tonight
That's why I know it's gonna be alright
'Cause somebody's praying me through
Somebody's praying me through

Currently Listening Coming Up to Breathe By MercyMe Hold Fast see related

Now for those of you who have no idea what this I would encourage you to google Ketogenic Diet and read up on it a bit. I first started looking at testimonials and information on this seizure treatment over a year ago. Every time I would read about it I would think...."there is no way I could do this". Perhaps I should explain a bit regarding this diet. The Ketogenic Diet is a medical treatment for controlling seizures by switching the body’s primary metabolism to a fat-based energy source, rather then utilizing glucose. The Ketogenic Diet is high in fat and low in carbs and protein. It is very rigid meaning that EVERYTHING that Mariah is given to eat must be part of a carefully planned meal with no room for error. Those of you who know me well know that I am rather random, not very scheduled, and prone to saying that things are "close enough". None of those things will work on this diet. Hence.....the feelings of being overwhelmed, despair, and resulting guilt when I would even look at what this diet would require of me and of our family. In March after hearing our doctor state so clearly and honestly that he would pursue the diet if he were in our shoes, we came home knowing that this was something that we really did need to seriously consider. We had also remained in contact with the doctor that we had seen at the University of Minneapolis and he had given us similiar advice....."strongly urging us to try the Ketogenic Diet". While in Duluth we did meet with a dietician who spent time talking with us about just what the diet would entail. She recommended a couple of books which I came home and ordered. Anyways....to shorten a long story Milt and I both came to feel that this was something that we should pursue. I continued to have serious doubts about just how I would be able to provide the diet to Mariah plus care for her other needs plus do all the normal life things that need done every day simply to keep a family running. At the urging of several friends who knew how things were really going within our family I decided to check into PCA (personal care assistant) services for Mariah. I had no idea if she would qualify or if that was even what I wanted to do but felt it was something we should check out. I set up an appt for a public health nurse to come to our home and go through the forms with me and explain the process. She was very nice and helpful and after seeing Mariah have several seizure episodes in the hour and a half that she was here she went from seeing if I qualified to urging me to take the services. When she left that day I remember feeling such a sense of hope.....she was such of an encouragement to me and it was so validating to have someone else recognize that while I was doing my best sometimes we still need help....and to know that help was on the way. She assured me that she was quite confident that Mariah would qualify for assistance. There have been a good deal of hoops to jump through and some days I felt that I spent hours on the phone to various agencies but it has paid off. I should be able to start using my PCA’s next week. I have also been blessed to be able to use PCA’s that I have chosen and hired myself. My friend Carita has committed to doing the bulk of the hours and several other friends will be getting signed up as backups. I feel very blessed to be able to use people that Mariah already knows and loves and feels safe with. Getting this in place made putting Mariah on the diet seem more manageable...but I still felt quite a bit of anxiety whenever I would read about it or looked at what was really involved. One afternoon I went to lunch with my friend Mary and was telling her about the diet. She was so encouraging and excited about what the diet could potentially do to help Mariah. Again to make shorten a long story she offered to help me with meal planning and food preparation. I still can not believe that someone is willing to do this to help me but I am so very very grateful. I remember thinking...."maybe I can do this after all". Both our doctor in Duluth and the doctor from the University of MN offered to get us the help we needed to initiate the diet. We decided to go through the hospital in Mpls since it is a children’s hospital and they have more experience there with this particular diet. We also have friends in the area that we can call on if necessary. I let the doctor know that we were ready and after lots more emailing and phone calls and working out countless details we are planning to start on this new phase of our journey this coming Monday, May 14. Milt, myself, and Mariah will drive to Mpls (approx five hours away) on Sunday afternoon. Monday morning at 7:00 am Mariah is scheduled for an EEG. Please pray for her as this is not going to be pleasant for her. Having 23 electrodes glued to her head is not going to be the way she wants to start her day! She has had EEG’s in the past but the last one was over a year ago. Once we are done with the test (probably a couple of hours from start to finish) we will go to the hospital where she will be admitted. They are telling us to plan to spend three days there at least and we will initiate the diet while we are there. The diet is such that it is important to be under the close supervision of a doctor and a dietitian. How long we are there depends on how long it takes her body to get into "ketosis". I will be receiving a good deal of training over this time regarding the diet so that I will understand how to plan, weigh, and perpare her meals once we are back home. My friend Mary will be taking this training with me. We needed to purchase a scale that will measure down to the 1/10th of a gram!!! When I think about the diet I still have moments of anxiety and wonder if I can really do what is required but I will take one meal at a time and know that "I can do ALL things through Him who strengthens me". There are no guarantees that this is going to help Mariah but the percentages of children with seizures that are helped by this diet are quite impressive. I have come to believe that whether or not this helps Mariah (which we of course hope with all our hearts that it will) that there is going to be benefits to our family for having done it. We are convinced with no hesitations that this is the next thing we need to pursue in our quest to find help for Mariah. It is going to mean a good deal of sacrifice on all our parts. We will not be eating "family style" anymore at the table. We will not be attending any food related functions as a family...and going out to eat as a family will no longer be an option. The diet will for at least the time being become our #1 priority meaning that many other good things will need to be let go of for now. We have installed locks on many of the cabinets as well as the fridge so as to prevent Mariah from getting any food that is not part of her planned meals. I have been trying to include Shelby in the process by telling her gradually different things that we won’t be doing or that are going to change once Mariah is on her diet. (For instance....no more popcorn at our house or eating any kind of candy, cookies, etc in front of Mariah). Shelby has needed to grieve through the loss of "life as we know it" and I am sure there will be more of that as time moves on. We are making arrangements for some special things for Shelby to look forward to once Mariah is on her "magic diet". It is important to me that Shelby does not get left out in the process of all the time and energy that is going to be needed for Mariah.

This week I have been busy ordering online (I am so grateful for internet!) a variety of things that will be needing for Mariah that are not available in our town. I had to get a special toothpaste for her. We will also need to be careful what kinds of shampoo, lotion, sunscreen, etc that we use on her while she is on this diet. I have also been trying to get things purchased at the grocery store that we will be needing for Mariah’s diet once we are back home.

We are committing to the diet for three to four months. After that amount of time we should have a pretty good idea of what benefit Mariah is receiving. If we do see the diet helping Mariah then she will probably remain on it for approx two years after which she will go back to normal food and hopefully remain seizure free. Again I must say that we do not know that this is going to help her but we know it is the next thing that we need to try. There is a movie "First Do No Harm" that is about the Ketogenic Diet. If you care to view it is is available in both DVD and VHS.

Mariah remains a very sweet loveable little girl. She still does not talk except for the occasional "Dad" or "Mom". She is loving the warmer weather and is happiest when outside. She has loved her afternoons at my friend Darla’s playing on their swing and running in their large backyard. Darla’s daughters love her and have helped to keep her safe and happy while she is there. It has been a huge boost to me these last few months to have help caring for her needs. The strain of caring for a child with extra needs can get quite heavy at times. I am very very blessed to have such a fine group of friends to relieve me of some of that weight every once in a while. Mariah is precious and we love her.

Shelby will be staying here in town and attending school while we are gone. We have not finalized our plans as to where she is staying but she is hoping to stay at her Grandma’s and sleep in their loft. She will probably stay with my parents for some of the time and perhaps with Witmer’s some of the time. I think she will do fine while we are gone altho she is going to miss us and we are going to miss her!! She continues to be our dramatic child.....either a complete joy to be around or exactly the opposite. LOL She is nearing the end of kindergarten and is beginning to read. She loves riding her bike and drawing. We love her.

Milt is the ever supportive husband and friend to me. He has lived under a great deal of stress and fatigue with not getting the sleep he needs as he is often the one who gets up in the night when Mariah wakens. He has not had an employee at the shop for the last couple of months and so has been running everything by himself which for any of you who have a business or have had a business you know that there is always so very much to be taking care of. I am sure that sometimes he wonders just how much farther he can stretch himself. We are very grateful that things are working out for him to be with Mariah and me in Mpls. He is planning on shortening his open hours next week at the shop (going from 9-6 to 12-6). He has already hung signs letting his customers know of this change in schedule and that it is due to the hospitalization of his daughter. He has been surprised by all the care and concern people have already shown regarding that. Our friend Sheldon who has his own business in town will be keeping our store open from 12-6 after coming in to do necessary things at his store in the morning. Again we are thankful for supportive friends during this difficult time.

So....it has felt like I was preparing for a marathon the last few weeks....which is probably how you are all feeling after reading this lengthy letter. LOL It is Friday morning as I complete writing this which gives me the weekend yet to do the rest of what needs doing before we leave on what I think is going to be a life changing endeavor. There is still much to do but I am getting things crossed off the many lists and I think come Sunday afternoon we will be ready. Thanks to the many of you who have inquired and urged me to update. Thanks to those of you who have prayed and will be praying. Thanks to those of you who have said "just let me know what I can do or what you need". Thanks for being our friends!