Hard Day

I am really struggling today. I feel like everything is just crashing in on me. I am 100% glad I went to the conference this weekend; I learned so much that I needed to know. And while knowledge is power, knowledge can be hard. Since I returned home, I have processed things in my head over, and over, and over. I almost feel the way I did when I first got her diagnosis, all over again, and this time, I "get it" a little more. I know I will get past this feeling of being so emotionally overwhelmed. Apparently it just takes me a while, and from what I have heard, it could happen again.

It probably doesn't help that I am not feeling that great, physically. I don't know what's going on. I sang in church Sunday, which I have done dozens of times before without incident, but at the end of the second "singing" time, I really thought I was going to faint. I have never fainted...ever... and I don't really get that nervous before I sing. I did get a little hot, but I have been hot before. I was so dizzy the rest of the day and ended up with a killer of a headache. Maybe stress? Maybe too much exertion this weekend? Who knows, but either way, it has not helped me emotionally, that is for sure.

My mood today, really started yesterday. I went to the grocery store last night, and I remember standing beside the baking supplies and all of a sudden, feeling like I just wished I could do something else. My body just felt like it was going to implode; I didn't know if I wanted to cry, scream, crawl in a hole, or what. I thought about sitting in the floor and bawling, but I was pretty sure that would not go unnoticed by others around me. Then I just wanted to eat, but that would just make me miserable in the end. The bottom line is, none of those options would help Clara, which is what I really want.

Just today, I have heard "wind" of well-meaning friends telling others things about Clara that are just not true. That has not helped my general "funk" today. The bottom line is, this is a dangerous disease. It is, in Clara's case, congenital, and it is very genetic. There are NO cures at this time, regardless of what others want to tell me or sell me. She is not "just a little tired, but will get better with some vitamins". Don't get me wrong. I don't want 'big drama and fanfare', or everyone walking around pitying her or making her "special" because she has a disease. But if someone doesn't know what they are talking about, they shouldn't say anything at all. That goes for anytime...not just about someone's child. This was said to people who wanted to pray for Clara, and by someone (or some ones) who I have considered a friend. It IS a big deal and she needs all the prayers she can get. I know I shouldn't care what others think....that just threw me for a loop. I don't want to be petty either. It is just so frustrating. I guess I will learn who my friends are.

Clara woke up today feeling "yuck". She told me her body hurt all over and she wanted to lay around. As I sat there holding her, I just thought, "Who am I to spend this much energy being this upset, when she deals with intense pain, almost daily, like such a champ?" She has been through so many painful procedures and rarely complains. Everything in me wants to just build a fort around her so nothing else can hurt her or harm her, and no bad germ can ever get near her. One sickness or one fever can change the whole course of this disease and that scares me to death. As every parent in this situation, I would give my very life to make this sweet girl well. But my life wouldn't help much. I am so thankful for Jesus, who DID give His life, to make us all well...spiritually well, and I praise Him that one day, whether on this earth or not, she is going to be well in every way. We are still praying for complete healing. We believe it can happen.

So sorry this is so depressing. it's just where I am today. This has been a stressful year, anyway, with Clara's diagnosis, trying to sell a house, dealing with Emilie's junk, and the list goes on. I think the past few days, it has all come together and wiped me out. Of course, I need to be preparing for our trip. I have GOT to get over this.

There have been some wonderful things happen today. I have an appointment with the Mito specialist I told you about. She is scheduled for September 15th, which is also a Wednesday so Jeff can go too! That is rare that he gets to go along with us, but this one is very important, so I am glad he gets to go. Also, we are really, really suspecting some blood sugar issues with Clara (that can very much go along with Mito) and Mito-Mom called today and wants to loan us her glucometer and a ketone meter. I am so thrilled and touched by this. God has put a truly amazing person in my life to help me through this. Mito-Mom, you are the BEST!!

As I type, I got an e-mail from a sweet, sweet friend in Michigan who has been researching mitochondrial disease specialists in that area for our trip. I did not ask her to do that...she just did, because she is so thoughtful and because she loves us. God really is so good and the most excellent provider.

So, what does a Mom do when she is almost too overwhelmed to function? Well, I don't know about others, but this one does something crafty. I wanted the girls to have hooded towels to take to Michigan, and I found some on clearance a Kohl's for $35 each. YIKES! $35 x 4??? Sorry. Can't do that. So I found some here and decided to make them and use the left over towel for a beach bag to carry their towels and sunscreen in. You may be surprised that the big girls want one, too. I have one thing to remind you of: The big "M", little "m" activity. 'Nuff said. :-) Here they are:

Here they are. Both babies wanted pink, so I just made the trim a little different. Alyssa wanted green and no trim. Surprise. :-)

I am in the process of making them all bags to match their towels, but Emilie and Clara's bags are the only ones that are (almost) done. They still need straps.

This is just a bonus. I thought it was cute. :-)

Well, tomorrow is another day, and His mercies are new every morning. I'm looking forward to that. :-)

Love you all! Goodnight!

Jeannie

Knowledge is Power

Knowledge is power.

I really do believe that.

However, in the months since Clara's diagnosis, I have been living somewhere else.

Denial...

...and I don't mean the river. (Sorry. Jeff humor.)

To be honest, I didn't realize that's where I have been living until this weekend.

Sure, I am aware of the seriousness of Clara's disease. I have tried to be very proactive in taking care of her. Not perfect, by any stretch, but I have done my best. But this weekend, it was all right in front of me. The very dark side of mitochondrial disease.

When I look at Clara, I do not see a disease. I do not see sickness. I see a sass-a-frass of a cutie that makes my heart skip a beat every time she walks into the room. I see a smart little charmer who can work her way into the coldest of hearts...I've seen it happen. I see the little miracle that we never thought I would even carry, let alone birth and fall absolutely in love with. I see a little girl who loves to play dress-up, do ballet with Bella Dancerella, read books together, color, and ask me what every single thing we see 'starts' with. I see sweet, funny, charming, strong in personality and will, and so much more. Sure, she gets tired easily, she cannot tolerate heat, and we have to be so very careful of the way we schedule her activities, because in many ways, she is fragile. But those are just not the things I want to define my little girl.

However, two weeks ago, it all came crashing down (literally). Clara had a big crash. Not the kind of crash you have when you hit a wall or fall down the stairs, but a metabolic crash. I have heard of them and know people whose children have experienced them, but it had never been Clara. She had experienced some minor crashes that were fixed with Gatorade and rest...but this one took the cake. I don't know when I have ever been so scared for one of my children.

As always, though, God worked that crash for our good. We realized some important things as a result:

1. We still do not understand what we are dealing with.

2. Clara does not have a mito doctor-and she desperately needs one.

Please do not misunderstand me. Up to this point, we have worked with some wonderful primary doctors, specialists, and sub-specialists. As a matter of fact, I think we have worked with some of the best there are. Our needs have just changed. In the midst of that crash we did not have a doctor that understood mito to tell us what to do, and that was a lonely, scary place to be.

That leads me to this past weekend. I knew I needed more knowledge, and once again, Mito-Mom lead the way. She is part of an FOD support group that sponsored a conference Friday and Saturday that was hosted by Emory University School of Medicine, Department of Human Genetics. While I will not bore you with all the details (unless you really want to know, and you ask for them), but I really want to share some of the high points.

What is FOD, you might ask?

Well, it stands for Fatty-acid Oxidation Disorder, and it is estimated that 30-40% of mito kids are affected. The way one of the specialists explained it is that the group of enzymes that contains the respiratory chain where the mitochondrial disease is, and the group of fatty acids where the FOD occurs, touch. Think of it as two houses of cards stacked right beside each other. If you take a card out of one of the houses and it crashes, it makes the one beside it crash with it. So, while it is not necessarily a second disease for mito kids, they can be affected with many of the same symptoms. Mitochondrial disease and FOD are both metabolic disorders, and while mitochondrial diseases are still considered rare (although there are as many people affected with them as there are people affected with cystic fibrosis), FODs are even more rare, and while there are many different types, there is still so little they know about them. This conference was a national conference and there were some VERY well-known doctors there; many of them were mitochondrial disease experts, and almost all of them were metabolic disorder specialists. If you have followed our story at all, you know we have not encountered many of those. Actually, there aren't that many to encounter. That made it extra cool to be in a place where there was a concentration of them. They all presented some great information, and even better, they were so very approachable and more than willing to answer questions between sessions. They usually sat with us at meals, too. In large part, they do what they do for the patients, as they are not paid very well because they do not have a "popular" specialty. But they have a passion for those affected and their families. Love that.

Here are the high points of my weekend:

*Being with Mito-Mom for two whole days...even in the car...and getting to ask her anything I wanted! Her 18 year-old delight-of-a-daughter came with us, too, and we had a BALL!!

*Meeting some really great, compassionate doctors who understand Clara's disease, at least as much as it can be understood at this point.

*Meeting some other Moms/Families that are dealing with the same issues we are.

*Meeting the representatives for a few of the foundations set up to help these children, and getting some very practical information about things like handling crashes, preventing crashes, ordering wheelchairs, filling out paperwork, and what to say to the ER doctors when you walk in. You think we don't know much about mito? Think about those poor, unsuspecting ER doctors that have to know so much about everything...but this disease is usually not one of them.

*Last, but certainly not least, WE FOUND A MITO DOCTOR FOR CLARA!!!!! This mito specialist used to work with Dr. Schoffner, the neurogeneticist that did Clara's biopsy. She has now started her own practice and is seeing patients. (Dr. Schoffner does not see patients. He is strictly a diagnostician and researcher.) I actually sat beside her in one of our break-out sessions. Honestly, I was too choked up while everyone was talking to say anything, so I just listened. But when it was over, I introduced myself to her and told her a little about Clara and our situation. I told her about "the crash" and she said, "Without a doubt, she should have been hospitalized". (I actually heard that from 3 of the mito specialists that were there when I told them about Clara. If you remember, Mito-Mom told me the same thing, but how do you run a kid to the ER without a doctor to call for support who understands why she is there? Hind-sight is 20/20). She told me that she would be honored to be Clara's doctor and to call her office and make an appointment. She is scheduling for September right now, but in a way, that is good. It will give us time to save up the money, as she does not take insurance. She will give us the forms to file for reimbursement. That is another story for another day, but I will leave it at: I understand why she does that, and it's okay. :-)

There were some very hard parts, aside from trying to understand all the charts, "pathways", and really big words. (Keep in mind...I was a MUSIC major. They don't teach you this stuff in Music School.) :-)

*While it was so great to learn so much, it was hard to learn so much. For example, I learned that a crash can cause many things including, but not limited to, sudden death, kidney failure, liver damage, brain damage...the list goes on.

*I saw a very dark side of these diseases. I saw the feeding tubes and wheelchairs, and met some of these precious children who are suffering much worse than Clara. I met the Moms who are changing the diapers of their 9 year-old children, and a number of Moms who have already lost their children. I saw what could be to come...although we are praying against it in a HUGE way! I met one very beautiful girl who had lead a very healthy life for 19 years, and then one day, while being a counselor at a camp for disabled children, she crashed. She had to be revived and woke up in the hospital with Mito/FOD. She now has a feeding tube, IV port, and spends a great deal of time in a wheelchair. I met another sweet baby who is suffering with a whole list of symptoms who cannot get a diagnosis (yet),....and the list goes on. See why I was too choked up to talk?

*As is usually the case, I am even more aware, now, of how much I still do not know or understand. Right now, my temptation is to beat myself up for the mistakes I have already made, but I know I can't go there. I have to pray for grace and mercy from a kind and compassionate Heavenly Father who loves my sweet girl more than I do (as hard as that is to fathom).

Overall, a good weekend. It was a lot to take in, like drinking from a fire hydrant, and I left with a headache, but I could not have asked for a better experience. Emory took very good care of us. Did you know the Emory Hotel and Conference Center has a bowling alley in it? A pretty one, at that. Who knew?? I only wish I had taken some molecular biology. Maybe I could have understood a little more of that language those doctors were speaking. :-)

Once again, thank you for your prayers. Please continue to pray for us this week as we prepare to go to Michigan next Saturday for Staff Revival Week. Pray that Clara will handle the trip well (that is usually a hard thing for her). She is not quite 100% from her crash, so we are praying she will bounce back all the way before we leave. Also, please pray that we get all of our newsletters done before we leave so we can mail them from MI.

Much love,
Jeannie

Heeeyyy...Macaroni, and a Few Other Things

I'm sorry. I think in songs...I just can't help it. So when you read the title, think "Macarena". Okay, glad I got that out of the way.

July 7th was National Macaroni Day. Did you know that? It's okay if you didn't. I happened to run across a headline somewhere that mentioned it. Otherwise, it would not have been celebrated here, either. However, when I realized what day it was, I immediately remembered a huge bag of pasta that I colored for another project last summer, and still had not used. It did not occur to me at the time that "just any old pasta" is not macaroni. For all intents and purposes, though, we are calling it macaroni, and I would appreciate it if you didn't tell the little girls any differently. :-) They had a ball. I wrote a big "M" and a little "m" on a piece of construction paper, drew it with glue, and let them glue their "macaroni" on, and then they decorated it with glitter glue. Actually, the funniest part was that the big girls were very quick to jump right in, too. It never occurred to me to make them a piece of paper with a big"M"and a little "m" on it, but as soon as they walked into the kitchen, they said "Where's mine?" And who says we don't do school in the summer?

Clara and Megan put the final touches on their Macaroni Masterpiece.

If you ask Alyssa, she will tell you she just wanted to "help", but I can assure you, she wanted in on all the fun!

I did not take pictures of our final masterpieces, but you get the drift. We also ate (not-from-scratch) macaroni and cheese for lunch, but I don't have pictures of that either.

The little girls have also worked on a few other projects. They made sun-catchers out of coffee filters, an idea we found here,

After they scribbled on the coffee filter, they painted them with water to make the colors blend. I then folded them three times and cut points around the edge, so that when we opened it, it would look like the sun. They are hanging on our back door looking very pretty right now, but SURPRISE! I don't have pictures of that either.

You can imagine how the big girls wanted in on this activity. I think they made more than the babies. I didn't capture that on film, though. Shucks! That could have been good "rehearsal dinner" material!

We made handprint dinosaurs we found here, but, again, I forgot to take pictures of the final products. Sorry. :-)

Here Megan is sponging her dinosaur.

Clara enjoyed matching her hands to her handprints after I drew them.
These dinosaurs turned out SO cute, but as you have probably guessed by now, I do not have pictures of the final product. Are you getting a theme here? I will try to get better at remembering to take those final pictures. At this point, I am just so happy we finished a project!

Megan is placing the correct number of clothespins on the dinosaurs we got here, one of my favorite blogs! What can I say? She likes to learn in style!

**I would like to add here, that we do NOT live in our PJ's all the time, although this summer, we have stayed in them more than usual. As far as I am concerned, I would much rather them do crafts in their PJ's than risk staining good clothes. I don't cry nearly as much over the PJ's. :-)

Beyond that, our summer has been fairly uneventful. We have done the normal "build forts out of boxes" thing, and played dress-up 1,542,754 times. It has been way too hot to get outside very much, but we have been out some in the mornings and evenings.We do have a trip to Michigan planned in two weeks for Staff Revival Week, so we are all looking forward to that.

I would like to give you a quick update on Clara. After two very scary days with her, she is doing much better. We really thought we were going to end up in the hospital, and I still wonder if we should have taken her. By Tuesday, she was much better, but I don't think she was totally herself until today. She went back to stuttering for a few days after her big crash, and she came close to crashing two or three more times last week. She has never had this many in a row, so please pray that she will stabilize completely and not have to deal with this anymore...or at least for a while. We are really praying about our trip to Michigan. For some reason, she does the worst on those trips...her first crash ever was on one of those trips (although we did not know what it was at the time). We are hoping to know more about how to help her for this trip. I am going to a conference this weekend with Mito-Mom that will talk a lot about this very topic, so I am excited to see what I will learn!

If you made it this far into this crazy post, thanks for reading!! I hope you have a wonderful day!!

Love-Jeannie

Scary Days

It seemed, over the past few months, that things with Clara had finally sort of settled down. We were coming to grips with her diagnosis, she seemed to making progress with her meds, and we were "maintaining". I got very excited about the possibility of featuring our other children, and featuring some of the fun things we have been doing, on our blog. After all, National Macaroni Day was last week...don't you want to know how we celebrated?? I want to show you, but first, I need to update you all on our sweet girl. As you may know by now, we had a very eventful few days. So many of you have e-mailed and texted and tried to call, (our phone is malfunctioning...again) and I am so very thankful!!!

You may already know that some Mitochondrial Disease kids "wilt" or "crash" from time to time. Mito Mom (you may remember me telling you about her a few months ago) had warned me early on that this could happen with Clara, and from time to time, it has. She will be totally fine one moment, and the next minute, she falls apart. She cries uncontrollably, she goes limp, and cries that everything hurts. Typically, we give her a little Gatorade and all is well. These "crashes" can be very dangerous for Mito kids. It can cause them to digress or even alter the disease completely, making it a much worse situation.

This past weekend, my brother, Thomas, and his girlfriend, Diana, very graciously asked to keep the kids for the night so that Jeff and I could have a special time to celebrate our 15th wedding anniversary. We packed all of their things, including Gatorade, and wrote out our lists of every possible thing (we thought) they needed to know about Clara and the other girls. At least we told them everything we knew to tell them. The girls were so excited to go and spend that time with them and Noah, my sweet little nephew, and they were not disappointed; they had a WONDERFUL time. They watched movies, ate Uncle Thomas's famous, fabulous, better-than-the-theater popcorn, and on Sunday, went swimming after church. When we arrived that evening, however, we got there just in time for a crash. Clara came to the door and I could tell the moment I saw her that something wasn't right. Diana and Thomas could tell something wasn't right. I was greeted at the door with, "Just in time." I would like to stop here and emphasize that Thomas and Diana took WONDERFUL care of our girls and did everything they could possibly have done, so in NO WAY was any of this their fault.

I immediately picked Clara up and she went limp on my shoulder. We offered her Gatorade and she would not even try to drink. Pizza had been ordered and I thought for sure that would perk her up. Nope. She collapsed on the table and finally in Jeff's lap, sound asleep. She even refused an ice cream sandwich....not heard of with our little sweet-toothed girl. We took everyone home and put them to bed, thinking that Clara just needed to sleep it all off. Like I said, we are still learning.

When Clara woke up the following morning, she was drenched with sweat and shaking so badly she could barely stand. I took her straight to the kitchen, where she guzzled about 8-10 ounces of Gatorade and ate a bowl of oatmeal. I really thought we were out of the woods. She rested all morning and seemed to be perking up a bit. At around 3:00, she wanted to go back to sleep. I thought that a little strange, as she does not nap any more, but thought it could nothing but help, considering her level of activity the previous day. She slept over two hours and woke up, once again, drenched in sweat and shaking, only this time, she did not want to drink, nor did she perk right up. She was listless and clingy and still had to be forced to drink. Without boring you with too many more details, I will just say that we did not feel real good putting her back to bed that night, despite how sleepy she was. She had not gone potty since early morning, and had had little to drink. After speaking with Mito Mom once again, I feared we were going to end up in the ER at Scottish Rite. (I could not have made it through that day without Mito-Mom...). I called her pediatrician, who advised me to wake her up every twenty minutes to give her Gatorade, even if by way of a syringe to get it into her. By 2:00 a.m., she had consumed over four ounces, and when I woke her up for that one she cried, "Noooo..." I figured that if she had the energy to balk, and I was about to collapse in the crib with her (...that paints a picture), I felt safe leaving her for the rest of the night. Especially since I knew her pediatrician was the one on call, and we already had a visit scheduled the following morning with her neurologist that had been scheduled already for three months.

She woke up the following morning already looking MUCH better. Then when she realized we were going to see Dr. Berenson, her boyfriend (her words, not mine), she perked up even more. By the time we were in Atlanta, you could barely tell anything had been wrong with her. Dr. Berenson felt like she may have gotten a virus on top of her exhaustion, causing it to be much worse. He also suggested that we feed her more frequent meals (even though blood sugar issues aren't totally what causes these crashes), so we will try that, as well. Hey, it can't hurt, right?

I am going to a conference at Emory next weekend where I will learn a lot more about the cause of these crashes and how to help her more. Obviously, that is not what the whole conference is about, but that is what I am the most interested in right now. I am riding with Mito-Mom, and hopefully I can get her permission to share her true identity and maybe even a picture. :-) She's great!

Please pray that Clara continues to do well as we go into the next few weeks. We are heading to Michigan for Revival Week the second week of August, and we are very concerned about how she will do. That trip always tends to be a little rough on her anyway, so now we are extra nervous.

Please continue to pray, also, for our house to sell, or for other arrangements to be made that would allow us to move to Michigan. In addition, we are still trying to get our newsletter out as soon as possible. Please pray that goes well. If you are not on our mailing list, but would like to be, please e-mail me here. I will need your full address.

As always, thank you for your prayers!! I will share some more fun posts soon!

Much Love,
Jeannie

Long Overdue Update Pt. 3: The Babies' Birthday

What I know:

I am starting to feel like myself again for the first time in at least four years. How do I know? PARTIES!!! I LOVE to throw a party. I love to plan the party, decorate for the party, and most of all, have lots people over for the party!

What I don't know:

When did "The Babies" turn into "The Little Girls"? In June, Megan turned three and Clara turned four. WHAT??!!?? Is that even possible?

As painful as this milestone was for me, (yes, I cried a little), we just had to have a party. Partly, because I am never sure if this will be their last birthday here and I want to make the most of it, and secondly, because this birthday is ALL these girls have talked about for 6 months....really. It was the third party hosted here in a little over a month, (Emilie had a birthday at the end of May, and we had a wedding celebration for my mother-in-law in the middle of May).

I did not go "all out", but I think the babies still had a great time!

Our theme: CUPCAKES!

First, we had a cupcake bar with lots of different cupcakes with lots of bowls of sprinkles for do-it-yourself decorating. What kid doesn't love sprinkles? The big girls made little cupcake truffles to go with them.


We sang "Happy Birthday" to a very excited duo of cute little girls. :-)




Clara had a little bit of cupcake with her sprinkles....




...and some very sweet little friends!




Megan was not shy about tearing into her cupcake...


....or her gifts.




This was her new potty chair. Accompanying it were the "puhple" panties she requested. She held up the package of panties high over her head and yelled, "Look everybody! I got PANTIES!!" Gotta love a kid who knows what she wants. :-)



Clara savored every gift she opened. They continue to play with everything!



Ms. Jill gave them a bubble machine that was a BIG hit after all the opening gifts and cake-eating was done!



Emilie and Nana had fun just blowing them at each other!

What Clara wants to know now:

"How many days until I turn five?"

Please don't rush it, baby girl! All this growing up is killing me!


Blessings!
Jeannie

A Long Overdue Update, Pt.2: Emilie's Birthday

Emilie has had an especially tough year. So for her birthday, we wanted to make a special effort to give her the best day we possibly could. She wanted no adults (although you can't avoid having some adults), and she wanted a beach party. We settled for a Hawaiian Luau. (Sand is not very plentiful around here.) :-)

Grandma Jackie and Mama Bea drank "Bahama Mamas" (Their words, not mine). :-)

...and so did Aunt Peggy

A punch balloon contest ensued among the girls to see who could punch the longest. After playing Wipeout...twice...we decided they were all winners. :-)

The men talked in the kitchen. (And they say we talk lot...)

Jeff had just finished aggravating Alyssa...hence the evil eye. That is his favorite thing to do...he is such a grown up kid, sometimes!

We had food....
..and more food...

...a "Beach Bear" cake....

...and a beautiful birthday girl. Where did 9 years go?

We also had friends....

...and sand art. This was after they played in the sprinkler, as is evidenced by the wet swimsuits. :-)

For those of you who are over the age of "9" and did not get invited, please do not be offended. We still love you so very much, and I know she does, too!

Happy 9th Birthday, Emilie!

Have a blessed day!
Jeannie

A Long Overdue Update Pt. 1

I am constantly telling my kids," You're not really sorry if you keep repeating the offense." Well, here I am one month past my last post...again...and I really am sorry! I want to write more, but the time just gets away from me. There are some really great ladies out there who update their blogs daily. I wish I knew their secret. :-) In many respects, I do feel like I am getting my feet back underneath me. It has only taken four years of a "baby blur", but I think I am coming back! We have been working super-hard in the house recently. My brother, Thomas, came over one day and totally dumped my garage into my driveway. I spent the day going through stuff, getting rid of stuff, and marveling at the machine he is. Four too-sweaty-to-wear shirts later, he had my whole garage put back together and in an orderly fashion. Those of you who really know me, know that garage had been a real thorn in my side for YEARS! I have had sweet friends help me over the years..thank goodness (Who knows how bad it would have been otherwise!), but I have never been able to just finish it. I still have a small row of boxes I need to finish sorting, putting away, and getting rid of, but I am well on my way. It's amazing how big that garage is. Now people who look at our house will be able to see that! To go along with our clean-out, I have been cleaning out drawers and closets...some that were really messy form my four year baby blur, but some were a wreck from our panic cleanings to get ready for a showing. We have just crammed stuff everywhere. Hopefully, we will not have to do that anymore soon, 1) because everything will have a place and the surplus will be gone, and 2) because hopefully our house will sell soon. In the meantime, we are keeping Goodwill in business!!

Well, there is so much to update that I will probably need two or three posts to do it. So much has happened this month, but so many of you have asked about Clara, I will start with her. Medically, we got another kick in the gut. That's exactly what it feels like when I take her to the doctor for what I think will be a routine check-up, and then we get some more stinkin' news. We continue to be concerned about her legs, but now her growth seems to be an issue, too. Clara, as well as my other three girls, have always been 90th percentile kids. Some higher or lower, but always in the 90's for height and weight. Clara has only been a slight exception, as her head measurements are in the 120th%tile, give or take, and her height and weight were always lower 90's or upper 80's. She has a tibial torsion, which the orthopedic doctor said is NOT the same as bowed legs, but the neurologist said it IS the same (story of my life....every doctor says something different), but either way, they aren't straight. We were hoping, by now, to have seen more progress. Not only are her legs still very bowed, but her height has dropped to the 15th %tile, which means not only are her legs not straight, but they are not growing correctly. She is growing well from the waist up, but not so much from the waist down, and her knees are 'thick' where they are having to take the brunt of her weight-bearing. This is all just how I understand it for now. We have an appointment with an orthopedic in September...yes, September, so we will know more then. As you may remember from previous posts, we found an orthopedic we absolutely ADORED last year (after a very bad experience with another one), but when we called to make an appointment for this year, he is no longer taking our insurance. I was very nervous about trying to find another, but God worked it all out, as usual! Long story short, the one we have been scheduled with is supposedly THE guy for mito kids, and would have been the one recommended by both therapists and Mito Mom (whose opinion I greatly respect). Thank You, Lord!!

Now, for happier Clara news, we experienced what I will consider one of happiest days ever on June 5th, 2010. Butterfly Dreams had its first ever Fun Show to give all the therapy kids an opportunity to ride and "show their stuff". There were no "placements" made-all the kids got to choose their own color of ribbons-but it was proof that you can just love to ride without all of that. Don't get me wrong, there is certainly a place for that. Clara, apparently, is quite the natural little equestrian, and I would let her show horses for real in a heartbeat if money were no object. But it is, so we are just savoring every minute of that day!


This is Clara with Ms. Peggy. Peggy is a certified Physical Therapist who works with Clara while she is on the horse to improve tone and balance. Clara has become so much stronger in her torso and her balance has improved SO much with this therapy. I can't say enough good things about it or Ms. Peggy!













This is Clara with Ms. Laura. Ms. Laura is a certified Therapeutic Riding Instructor at Butterfly Dreams. She has given so much of her time and expertise to help Clara. I know little-to-nothing about horses, but she and Ms. Peggy think Clara has a lot of promise. Normally, the hippotherapy kids don't learn to use the reins, saddle, and stirrups, but Ms. Laura and Ms. Peggy have been working together to give Clara the best of both therapy worlds. Words cannot express out gratitude to these two ladies!

Additionally, Rosie, Clara's normal horse, was not rideable for the show, as she decided a week earlier to roll in an ant bed and was covered from head to toe...er...hoof...with ant bites. Ms. Laura came to the rescue with her own, personal horse, Mage. We all fell in love with Mage. He is one fabulous horse! Ms. Laura is holding the basket of goodies Clara and I put together for Mage with all of his favorites: big, juicy carrots and apples. YUM!

Couldn't resist this shot. She just looked so doggone cute in those breeches!

















Here she is, sitting tall, on Mage! She was all smiles, all day! As a matter of fact, she rode in three events, and even after all of that, she did not want to get off. They said, "It's time to get off, Clara." She said, "But why?" She loves it!















Clara won three ribbons. She chose two pinks and a blue. :-)


















Ready to ride!














Here she is navigating her way through the obstacle course. For liability, she has to have one person leading the horse and two side-walkers, but Ms. Peggy assures me she was steering that horse all on her own. Pretty amazing. Well, to me, anyway. Maybe someday I will share my (2) horse stories...or...maybe not. :-) Let's just say that it's a good thing my middle name is not Grace, because I sure wouldn't live up to it. :-) I am just thankful Clara did take after me in this area.




And then, to finish it all off, Clara began waving at the audience when she walked by. What a ham!! She thought that was hilarious!












Clara and Mage. They made a great team. Aren't they both beautiful?













Well, I hope I haven't totally bored you by going on and on, but when I say it was one of my happiest days ever...it really was. Seeing Clara on that horse just makes me so happy I could bust. Not only do I think she is beautiful up there, but it melts my heart to realize there is a physical activity that Clara could be really good at, in spite of her legs. Did I mention that we found a therapeutic riding ranch about 30 miles from where we'll be in Michigan?? Yep. Sure did. God is good!!

Well, there is so much more to update you all on, but it will have to wait another day. Please continue to pray with us for our house to sell. We have dropped to a VERY competitive price and so now it is totally in God's hands. There is not one more thing we can do but pray and pack! He has used this time to grow us in so many ways. In many respects, we are experiencing a revival, right here in our own home. We know He still has us here for a reason, and we have stopped even trying to guess what that reason is. Ideally, we would love to be up there before the first week in August, but we'll be ready whenever He is. Also, we are trying very hard to get our newsletter out. We try to send those out every 3-6 months, but I think it has been close to year since our last one. We would really like to have that done within the next week. It is such an important part of our ministry to stay in contact with our supporters, and a part we really love, but it is very time consuming. Please pray that God would multiply our time this week and that all of our technology would cooperate. When we are trying to print out letters is usually when our printer goes on the blink. As always, we would love to pray for you, too!! Please let us know how we can specifically pray for you or someone you know.

Many Blessing, My Friends!!

Love,
Jeannie