Tuesday, May 31, 2011

Emilie's 10!

...or "the Big 1-0", as she likes to say!

 She has been looking forward to this birthday since her last birthday.

She loves parties.

She loves fashion...anything sparkly will do.

 She is sweet and kind and a loyal friend.


She can be so very fun!

She loves her little sisters... I am always amazed at her creativity when she plays with them.

There is no end to her creativity.

She loved the snow this winter....

...and she is so good at seeing the beauty in the things around her. (These are pictures she took of our neighbor's flowers.)

I love those things about her.

Happy 10th Birthday, Sweet Girl.

I love you so very much!


Saturday, May 28, 2011

Follow-Up at the U of M

Thursday, Jeff, Clara, and I traveled, once again, to Ann Arbor to visit Clara's endocrinologist at The University of Michigan. My friend, Judith, came to my house with two of her kiddos to stay with our other three for the night (which they were super-excited about), and Clara looked forward to having her parents all to herself....'All Hail Queen Clara'. :-) (Or at least she likes to think of it that way.)

While our three oldest were at home renting movies, baking cookies, going to the park, and hosts of other fun things, Clara and I rode in style, as well. Jeff set up the "Bryant Limo" for our traveling pleasure. He folded the captain's chairs in the middle of the van under the floor board, put Clara's seat in the back, put a suitcase back there for me to prop my feet on, supplied blankets, and rented some movies for us to watch from Redbox. It was like our very own theater...mini-van style. :-) It did make the trip go much faster, and I got a great nap, to boot!

 Clara on her back-seat throne. :-)

Things were much less eventful than usual when we arrived at the U of M....it seems we are learning our way around...FINALLY. The only thing that scared me a little were all the "Under Renovation...Preparing for our Move" signs we saw all around the hospital, displayed by gigantic Big Birds. It seems they are moving all of Clara's doctor's offices into the actual Mott's Children's Hospital.  It looks like we'll be finding our way around again next time. :-) (I think I can I think I can.....) We did have one kind of funny thing happen when we arrived at the doctor's office. When they gave us the form to verify all of Clara's information, they had our employer listed as "Why Faction Ministries". Hee Hee...

While we did not expect conclusive answers at this visit, we did pray for some good news and positive results from Clara's additional medications these last three months. I asked the doctor a few of my questions, but it became obvious that, as usual, no one really has a whole lot of answers where Clara is concerned....yet. Not to mention, that doctor will not make eye contact with me...she always looks at Jeff. Don't get me wrong, my man is one smart man, and if you have an insurance question, he's your guy. But if you want to know something about Clara's medical history or about her day to day life, that is more my expertise. So, while her lack of eye contact with me and insistence upon asking Jeff all the questions is slightly frustrating to me, she is a very good doctor and she is great with Clara. I can't complain about that. :-) Clara had to go to the lab for a blood draw and then to radiology for an x-ray of her knee. The labs will tell us how her medication may need to be adjusted and the x-ray was to see if her bones had healed, neither of which we expected to know that day. When we were done, we left.

Clara being as sweet as sugar while she got her blood pressure taken. She was a champ, as always!

Clara and Dr. Hopwood


When we arrived home, we had a message from the doctor. She said that the x-rays that had been done on Clara three months ago had been lost (ugh!) and could I please send them a copy of them. Well, I must admit, this whole experience with the medical community over the last four years has made me realize how important it is to have a copy of everything for myself. I am a little reluctant to send them my only copy of her x-rays. I am going to contact her pediatrician on Tuesday to see if her has the software capability in his office to open the files on the disc and make a copy. If not, I will go from there. She did say, however, that Clara's bones are not healed and that there are still abnormalities. That was NOT what I wanted to hear. Once they have all of the information gathered, she said they would make some decisions on how to proceed. So for now, we just continue the way we have been up to this point. And we wait....some more....

I also wanted to take this opportunity to thank everyone who prayed for our family and Emilie after my last post. I cannot tell you that things were instantly better but I can absolutely tell you that I felt your prayers and experienced the peace that passes understanding. I feel like things have been a little better these last few days, so we will continue, in God's strength, to push forward and raise this sweet girl (and her three sisters) He has given us.

I pray this Memorial Day weekend is wonderful for everyone and I hope we NEVER forget the sacrifices that have been made by our brave soldiers to keep us a free country.

God Bless America!! Revive us again!


Monday, May 23, 2011

Days Like This

Hey Friends,

I know it has been so long...too long...since I have posted. I thought I would take a few minutes and get you all up to date.

I guess the biggest thing people want to know is, "How is Clara?"

Well, thank you for asking. :-)

Clara is doing okay. I know I shared some time ago that we had put her on a new supplement for muscle pain and taken her off of the ibuprofen. Overall that is still going pretty well. I am a bit concerned, though. There have been a few days recently where she has complained of her arms and legs hurting, and she has not complained of her arms hurting in a very long time. She has some mood/anger stuff going on, as well, and with her it is always hard to know if we are dealing with a behavior/heart issue, or if we are dealing with unmanaged pain that she doesn't know how to deal with except to be mean, grumpy, and whiny. I keep praying for wisdom....and recently, giving her ibuprofen, at least before bed. We go back to the U of M next week for our second visit with the endocrinologist. This is the first visit since her diagnosis of hypophosphatemic rickets, so I am armed with lots of questions this time. Specifically, I want to know if all of her mito symptoms can be explained with rickets. I am still struggling a bit with that one. Two weeks later we will be going back to the U of M to meet with the geneticist/bone specialist. In the midst of all of this, there is one final test that we are trying to get taken care of before we come to Georgia this summer and meet with her geneticist there. It takes 21 days for the results to come back, but so far, neither our private insurance or her supplemental insurance want to cover it. I am frustrated to say the least, as I really think we need those results before any final decisions can be made about what is really going on with our girl.

As heavy as this weighs on my heart, always, right now there is something even heavier on my heart. The people close to me know about it, but I have never shared publicly, for two reasons. The first reason is the privacy of the child involved, and the second reason is for fear of being judged. However, we are to a point where we desperately need the prayers of our praying friends. We have reached the end of our rope (which is usually the best place to be....sometimes the ONLY place to be for God to do His work and to make us realize how much we need Him.) As many of you know, we have struggled with issues with Emilie, our second-born, for years. She started out as this happy, cute, and charming little baby and toddler. When she reached the end of her 2's and entered into her early 3's, we noticed some changes. At the time, we wrote it off to "being three" (which in my opinion are WAY worse than 2's). However, as years went by, things got worse, and worse. About 3 years ago, she was officially diagnosed with ADHD. I was very, very resistant to this diagnosis. I considered it a failure on my part, despite feeling like we were doing everything humanly possible for this child in the way of love, support, and discipline. I had always been led to believe that the ADHD diagnosis was for the parents of kids who just didn't want to discipline them and wanted a quick fix. As resistant as I was to the diagnosis, I was even more resistant to the medication. However, things got so bad, and Emilie's self-esteem was plummeting so low, that we had to do something. We sought lots of council from her doctor and from people in our lives that we have great respect for the wisdom they share with us. We decided to try the meds and were absolutely amazed at the difference. This was truly not a decision about behavior, although her behavior was greatly improved. It was mostly about Emilie feeling like a loser and a failure because no matter how hard she tried, she could do nothing right and for, what was becoming more and more obvious, physiological reasons. Within weeks we saw great improvement in her concentration levels to do her schoolwork, to finish a conversation, and to remember to finish doing things like brushing her teeth without getting distracted and walking away in the middle of doing it. Not to mention, she was just more peaceful and pleasant to be around. It has to be very frustrating to not be able to concentrate on anything.

For a while, things were much better. However, about six months before we moved, Emilie came running into our room one night pale, crying, and in an absolute panic. We had already tucked everyone in bed about an hour earlier (however, one of the worst side-effects for Emilie and her ADHD medication was the inability to fall asleep at night). I asked her what was wrong and what she said still gives me chills to this day. She said, "Mommy, I need you to come to my room right now. There are three hunters outside my window shooting their guns and they are screaming at me that they are going to come into my room and kill me."

Doesn't that sound like what you want to hear from your 8 year-old daughter?

I went into her room and, of course, saw nothing outside her window. She begged me to go outside and look, so I did. I went outside, looked around and said, "Emilie, there is no one here."

I must admit that, at this point, my warped sense of humor very briefly took over. I couldn't help but think that if we were on a sit-com, that is the point where I would have been shot by the real hunters in the front yard.

However, the humor was very fleeting, and truly, I wish there had really been hunters in the front yard than for Emilie to have to deal with what she was dealing with.

I should interject here that there is a long history of mental illness in our family. I just always prayed it would miss my children somehow.

Thankfully, we had an appointment two days later with a fabulous child psychiatrist. The short version is that we couldn't afford all the testing she needed (and still needs), but he feels she definitely has a mood disorder of some sort. She is too young to know exactly which one we are dealing with, but that day, she had to go on more medication. We found out at that appointment that not only was she hearing hunters, there was someone named Ashley on our roof talking to her and someone under her bed. So as resistant as I am to medication in general, between Clara and Emilie, I have a cabinet full of it.

The new meds helped her for a while, but in the last three months, things are getting really bad again. Some days, it is like she does not even take medication. She is in counseling here and we have been referred to another child psychiatrist. It is possible that with puberty on the horizon (she is almost 10), her medication needs to be changed. Who knows. We have had it suggested multiple times by my doctor, her counselor, and friends that we are dealing with satanic warfare. I truly believe that's possible. Why in the world would satan want what we have just done...given up everything to moved 800 miles to go into full-time ministry....to be easy for us? Furthermore, the number one way our society is being destroyed is by the breaking down of our families. By God's grace, I am determined that ours will not be one of them. So, I am going to read up on the topic. I definitely believe it exists, I just don't know much about it.... my interest has definitely been peaked .

This is one of those posts where I am going to have a hard time hitting "publish post". Again, I have been so judged in the last few years. I have mistakenly shared with people I thought I could trust who have said things like,

"Jeannie, you better teach her to (fill in the blank) now because it's going to get harder as she grows".


"You better do something about that now before it gets worse."


"You need to (fill in the blank)." As if we have not tried everything...at least everything we have known to try.  We have always felt we were good parents. Not perfect, by ANY stretch, but good parents. If all four of our kids were this way it would be different, but it's just this one.


"She needs vitamins."


"You haven't spanked her long enough or hard enough."


Just a judging look, like "Send her to me. I'll get that fixed."


A whole host of other parenting advice that works on 'normal' (and my other three) children.

What I now know is that the people who said those things do not have a child like Emilie. They are not raising a child that it is like the main character in the movie Twenty First Dates. You make some progress one day and the next day, it's like it never happened.

Her counselor believes she has some sort of learning disorder where she does not learn from experience, and I think she might be right. I could tell story after story.

What I do know is that Emilie is fearfully and wonderfully made....God made her just the way she is and He gave her to us for a reason. I am not sure what that reason is, yet, because I can think of a hundred other people who would be more equipped to help her. But here we are, seeking wisdom and grace...and I know He will give it.  On the up side, she really can be so sweet and so generous (almost to a fault) and is the most loyal friend you would ever want. She is smart and extremely creative (and as a result, very messy). She also loves the Lord....gotta love that, too. And one of the most hopeful things....she wants to do the right thing. If she didn't care about doing the right thing we would have an even bigger problem.

We have considered the possibility that she, too, has Mito. There has been a great deal of research done on the link between Mito and Autism/Asperger's/ADHD, and what they are finding are very strong connections between them. If Clara has Mito it would make sense that another of our children could have it, but if we, in fact, find out Clara does not have Mito, there is much less likelihood that is what Emilie is dealing with.

Please pray we get some answers that do not involve more medication...real help and practical strategies. Please pray that her older (thinks-she's-perfect) sister would show her some grace and mercy and stop treating her like she belongs at the bottom of the food chain. Pray that her nasty habits would improve and that her weird and awful behavior things would not rub off on her baby sisters. Most of all, please pray for peace for Emilie. Her grandmother described it best...it's like she's tormented. She doesn't even rest peacefully.

I have never been comfortable with the idea of "airing dirty laundry", however, I believe that none of us really have a  ministry of any type until we are ready to be open and honest about our struggles. My prayer is that if someone else is dealing with these same things that they would know they are not alone. These are the kinds of things so many people struggle with silently...not exactly the kinds of things you post as a Facebook status...but they are real and they are painful. I have been writing/working on this post for well over a week. I have second-guessed myself a million times, thinking maybe I shouldn't post it. I have prayed about it A LOT, and feel no peace about deleting it. I have considered just writing another one and pretending this one does not exist....but no other ones will come. Emilie is an emotional basket case today....I would appreciate your prayers. So for whatever reason....this is me, hitting "publish post".

I pray your day is blessed!


Friday, May 6, 2011

Answered Prayer and Mixed Emotions

We had a big answer to prayer two days ago! It has been getting increasingly harder to go places with Clara. Not because of behavior, or anything like that, but because of her stamina. Her little legs get so tired and start hurting and she is getting heavier and heavier and harder to carry. We have an umbrella stroller from when she was little, but as you can imagine, she has outgrown that. She is almost five years-old, after all! I would put her in it but I would have to fight to keep her in it.

When we were in Georgia, we started the process of getting an adaptive stroller for her. An adaptive stroller is somewhere between a  regular stroller and a wheel chair. They are heavy duty and they are designed for older children. There are a number of different kinds, but after looking at the strollers of other people we have met, we had an idea of which one we needed. So before we moved, we started the process of getting Clara  a stroller. Her geneticist wrote the prescription for everything she needed and her physical therapist put us in contact with a representative. However, we did not have enough time to finish the process before we moved.

Once we moved to Michigan, we got another prescription from her geneticist, and once we found a doctor (which as you may remember, that took us a while) and got her started with PT here, we got in contact with another representative through her current physical therapist. After months of waiting on insurance approval and paperwork from all of her doctors, we FINALLY got Clara's stroller two days ago!

 Clara in her new, purple Convaid adaptive stroller. She got to choose her own color.
Also, notice the dandelion necklace? Grandma Jackie had just taught the girls how to make those before we met with Mr. Ken. This place has the biggest dandelions I have EVER seen!

 Clara and Mr. Ken, the representative who fit her for her stroller. 
He gives her good stickers, too! :-)

As happy as we were to finally have it and as thankful as we were for the way God provided for it (they are NOT cheap), watching my baby girl sit in it gave me a lump in my throat. That is just not the kind of thing you ever want your child to need, and it was just a very present reminder that our sweet girl has medical issues. However, I swallowed my tears.....yes, for once I did NOT cry....and just tried to focus on the answered prayer and the gratitude in my heart. Not to mention, Clara was so excited! We went to the South Bend Chocolate factory right after Mr. Ken left here (Grandma Jackie and Mr. Jim were visiting and we HAD to take them to one of our favorite places!), and that sweet girl stayed in that stroller the entire time....a feat we were unable to accomplish in the umbrella stroller because she was so uncomfortable. With summer coming, I think the timing is perfect! We are going to be able to go and do so much more than we could before and Clara will be able to use her energy for the fun things a little girl should be able to use her energy on instead of using it all up just trying to get to where she wants to go! So as sad as it makes me that she needs it, if she needs it, I am glad she has it. Make sense?

Thank You, God!!

Have a blessed day!!