Birthdays, Shriners, and Other Various Celebrations

There are a lot of exciting things going on here at our house. While it has made for the busiest few months I have had in a long time, many wonderful memories have resulted!

Here are some highlights:

Two weeks ago, we had Emilie's 11th birthday party. Emilie, by nature, is my "love to have a party" girl, and last year, we did not know enough people well enough to have a party for her. We still found a way to make it special for her, but this year, this girl was READY for a PARTY!! She had about ten girls at the house, but I haven't asked permission from any of their mothers to show pictures of them on the blog, so here is a cute one of Emilie before it all started.

This past weekend, we celebrated Megan's 5th and Clara's 6th birthday. Talk about a house full of kids! Again, didn't get a lot of parent's permission, so I will stick mostly with pictures of my girls:

 

 

 My sister made the horses and ladybugs for this cake. Aren't they cute!! She also made these adorable little flowers to put on the cake, but unfortunately, they melted together during their shipment. So, we split them apart and made a flower bush on either side of the stream. :-)

 Cowgirl hats and boots from Papa and Grandma Bev!!

 

 Round 'em up!!

Cowgirl boots. The shoe for all occasions. :-) 

Jeff built a "kid-wash" in the backyard that was enjoyed at both parties. Lots of squealing ensued, and lots of fun was had by all. :-)

For everyone who gave the girls birthday money, either while we were in Georgia or via the mail, I thought you might like to know how it was spent. All three girls got new bikes!! That is something they have needed/wanted, and they were very happy about getting them....and have had a ball riding them! Thank you!!!

I must say that I have been feeling especially homesick lately. I guess with all the birthdays we've had recently, that's usually a time of the year when we see everyone......and I miss it. I must say, however, that my little brother came to visit for the little girls' party, and it was SO GOOD TO SEE HIM and it did wonders for my heart. Just having a little piece of home here for a party was such a blessing, and by far, the best part of my day. Thanks, Drew. :-)

Emilie and Clara joined The American Heritage Girls this past January. We were so excited to find a troop here! They are a Christ-centered scouting group where service to God, family, community, and country are emphasized. Their oath:

I promise to love God,
Cherish my family,
Honor my country,
and Serve in my community.

Gotta love that!

They earn badges and memorize lots of scripture as part of their requirements, in addition to lots of camping, nature hiking, and all the other fun things you would expect from scouts!! They were endorsed by James Dobson on Focus on the Family and are the only girl scouting group that the Boy Scouts of American has ever allowed themselves to be affiliated with because of their mutual strong commitment to godly values, not to mention the partnerships formed with Dannah Gresh's ministry Pure Freedom, and Big Idea Productions/Veggie Tales. All of this makes me feel really good about their participation....not to mention the LOADS of fun they are having!!! 

Just a week ago, they had their Spring Court of Awards where Emilie and Clara received badges and a promotion they've been working hard for, and Megan was officially accepted into the troop, thanks to a recent birthday making her the right age. :-) 

Clara with the beads she earned for her Pathfinder necklace, and her new badges to add to her new Tenderheart uniform. This was one excited girl!

Emilie with one of her leaders, Ms. Kathy. Emilie also received a number of badges that she worked hard for. They were: The 7 C's of Creation, Daughter of the King, Textile Arts, her Joining Award, and a HUG award. (That stands for something, but I need to ask what it's for.)

Here's Megan. She was helping with the play about about Sacajawea by holding up one of the "Act __ " signs. She was very excited.....but she's always excited. :-) Notice Jessie, her race horse, on her left arm....he goes everywhere with her. :-)

This is Clara with Mr. Dan, whom she absolutely ADORES! He was her leader this year. I failed to get a picture with their other leader, Ms. Tami. They really love her, too!!

Definitely significant on our list of achievements is that Jeff did his first half-marathon!! So proud of him! Here he is with a few other Life Action folks he ran into (no pun intended). :-) He finished his race in 2 hours and 18 minutes. Not too shabby for a first time!

And finally, for some really big news.....

Clara was accepted!!!

Clara will be checking in to the Shriners Hospital in St. Louis, Missouri on a Monday in September and checking out that Friday for a week full of thorough testing and making a plan for her care. In the brochure 30 pages of forms we received, it said:

"The Research Facility currently follows the largest group of children anywhere with XLH (X-Linked Hypophosphatemia). ....Healing of rickets, correction of bone deformity, and improved growth rates and stature have been seen when compliance with medical therapy is maintained."

This gives us some hope. Right now, we're getting nowhere. She has grown about a half of a centimeter in two years, and we are facing a very invasive surgery to correct one of her legs. The care management nurse Jeff spoke with encouraged us to wait on that surgery, because with their treatment plan for these kids they have seen success with the bone fixing itself. The doctor she is seeing sees over 100 kids per year with XLH. She will also get an orthopedic consult while she is there.

We have always been so thankful for those of you who keep us in your prayers. Once again, we covet your prayers. Specifically, for

1) Wisdom as we prepare for this visit and decide how many of our appointments with other doctors we follow up with between now and then, and how many we should just cancel.

2) That we will get the answers we need to help our girl.

3) That God would, once again, provide everything we need to get us there. Her hospital stay is covered by the Shriners, as well as my bed beside hers, but we have to cover transportation and my food once we're there.

4) Please begin to pray now for Jeff as he stays back with the other girls. It is going to be hard for him to be here while we're there. He is a wonderful Daddy, and I never worry about him or the girls when they are here.....I know he'll take great care of them. (That probably won't stop me from leaving some meals in the freezer and feeling guilty while I'm gone.). :-)

5) That I will be able to get all of the paperwork needed to the hospital in the amount of time I have to get it to them. I have a huge notebook full of her medical records, but there are some things I just don't have. SO, we are sending release forms to every doctor she's ever seen, and praying they will get those to the hospital in a timely manner.

6) That Clara will stay healthy between now and then and that nothing will interfere with her visit.

As always, thanks for caring about our little family and for staying up-to-date with us. I pray your day is blessed!!

Much Love,
Jeannie

Clara's Journey Continues

It occurred to me the other day, as I spoke with a friend at church, that many people up here really don't know Clara's story. After all, it's not something we go around talking about all the time, and we have been very intentional about keeping our lives from revolving around her medical problems....or trying to, at least. (Sometimes it can't be avoided.) My friend was asking a lot of questions (I think people are finally starting to feel comfortable enough with us to ask questions), and as I was telling Clara's story, I said something along the lines of, "A book could be written about the miracles God has performed in her life up to this point." My sweet friend said, "Oh...I know! You should start a blog." It was then that I realized how new we really still are here. :-) I was going to go through my blog and post links to some of my posts that really tell her story for my new friends in Michigan. After sifting through three years of posts, however, I realized that I didn't really know what people would want to know, if anything. So....if you are a new friend, please feel free to browse through my blog history. Most of the earlier posts are about her. There is one post that is a general overview (kind of a Cliff's Notes version, if you will), but specifics are in other posts. If you can't find out what you want to know, just ask. I would rather people know than speculate. After all, the body of Christ is family, right?

Having said all of that....here is an update and some exciting news!

We just returned from a visit to the U of M. It has been a few months since we were there, and today's appointment was to visit one of our favorite doctors. I know I have mentioned her before, but I can never remember her whole title. Something about spinal health and rehabilitation??? I don't know. But I DO know that we love her, can talk to her about anything (she's a remarkable translator after we have talked to the other doctors), she has four girls like we do, and she handles all of Clara's orthodic needs....including getting her set up with her adaptive stroller. Clara loves her, too, and to sweeten the whole deal, Dr. Green also rides horses! She's a competitive jumper, so they always have lots to talk about. :-) Our visit today was short. Basically, she said Clara's pronation looks improved (YAAY!). She mentioned that if it did not correct itself with orthodics, Clara would need foot surgery, in addition to the leg surgery she will need (unless God straightens the leg like we are asking Him to). That was the first I had heard about foot surgery, but I am never really surprised about being surprised at what I learn at Clara's doctor visits. She did mentioned that we would want to avoid that surgery because it's messy and hard to heal from.

Have I mentioned that doctors are not the best salespeople?

She gave us permission to let Clara wear her cowgirl boots without the orthodics, though, and that made Clara smile. She really doesn't care for her orthodics.

Beyond that, Clara looked good from Dr. Green's perspective. She had grown a centimeter since we last saw her (It's a small amount, but we'll take it!), and was otherwise healthy. Dr. Green had three medical students following her around today, and while most kids would be intimidated by that, Clara was NOT! She was in true character and did not disappoint. She had everyone rolling!! There are things Clara lacks, but personality is not one of them. :-)

Usually when we take these trips, it is me and Clara, and either one of our other children, Jeff, or once, a friend went with me. However, this time, Jeff felt like we all needed some time away, and we ALL went. We always try to throw in something fun, Cracker Barrel for okra and chicken-n-dumplins if Clara has her way, but since we had the whole gang this time, we wanted to do something they could all appreciate. We LOVE the show Man V. Food, and on one of his shows, he was in Ann Arbor. He went to a restaurant called Tio's Mexican Cafe, where he completed the "Mt. Nacheesmo Challenge". While we would never, ever attempt that challenge on our own, we did think it would be fun, as a family, to share the 5 pound platter of nachos.

Yes, I said, "Five pounds."

 The cacophony.

Can we just say the blessing, already?

 The carnage.

 Uggghhh...

On to the exciting news!

Throughout Clara's journey, it never ceases to amaze me how God has provided what we've needed, right when we have needed it. She is complicated, medically, and as of right now, we are still not entirely sure what all is going on with her. At her last visit with the geneticist back in April, it was strongly suggested to us that we get a second opinion on Clara's rickets treatment. She has undergone treatment for hypophosphatemic rickets for nearly a year and a half, with no results. When she was first diagnosed, her endocrinologist at the U of M talked as if it would take 6 months, or so, of treatment, and the rickets would be gone.

That has not been the case.

Every six months we get new lab work and knee x-rays, and every six months it's always the same: No progress. Her body is still wasting phosphates and her bones have not healed. This is frustrating to me on many levels:

1) Clara is in pain. It is worse with heat, (which still makes me think mito is a factor), but it kills me for her to go to bed crying in pain and to spend a large portion of her day lying around because it requires too much effort to keep moving. Dr. Kendall prescribed a new cream for the pain (ibuprofen doesn't always help anymore), and I have found a pharmacy that will compound it for us. Hopefully that will help.

2) She is getting older, and the older she gets, the less chance there is that some of her physical damage from the rickets will correct itself.

3) Aside from God's healing hand....and I know He can if it's His will.....Clara needs surgery to fix the bowing of  her legs. Damage is being done to her lower spine and hip. However, the surgery she needs to fix her leg cannot be done until the rickets is gone. The bone has to be cut all the way through and pinned back together, and that cannot be done on unhealthy bone.

After our visit with Dr. Kendall in April, we began praying and researching medical journals to find a doctor that would see Clara for a second opinion. We kept hitting a lot of dead ends, and even thedoctors we found that seemed promising, we never felt a peace about, so we left it in God's hands, praying that God would lead us down the right path.

Out of the blue one day, I got a phone call from one of my favorite people in  he world. She has Type 1 diabetes and had an endocrinologist she loved until the doctor moved to Colorado about three years ago. She asked if I would e-mail a brief paragraph about what is going on with Clara so she could e-mail it to that doctor.

If I'm being honest, I was skeptical at first. I wondered why another person's former doctor would care about my little girl. I didn't think it would hurt anything, though, and I sent it on to her. Well, wouldn't ya know? A week later, we got a response form her! She recommended a doctor at the Shriner's Hospital in St. Louis that deals with bone diseases. When I googled him and read the description of what his specialties are, I nearly cried. It matched Clara to a "T". I thought, "God has put this man on earth just for Clara!"

His e-mail address was right there on the page, so I sent him a longer medical history on Clara, praying that he would agree to see her. In less than twenty-four hours, his nurse had sent me an e-mail requesting that I call her. She said that the doctor had forwarded my e-mail to her and he wanted to see her. She wanted to set up an appointment! When I talked to her on the phone, she said that Clara was exactly the kind of patient that the doctor sees, and that he would like to get her scheduled as soon as possible. (Commence tears...tears of relief, I guess. It's been a long road that keeps winding, twisting, and turning.) There is an admittance application that we had to fax first to get her into the system, then after that, we can get the ball rolling. She also said that, since it is a Shriner's Hospital, a research facility, they will admit Clara for a week, monitor her constantly, and set up the best treatment for her based on all of her levels for that week. And to ease my concerns even further, they will find her a sponsor from their end, so all we have to save money for is a plane flight and food along the way! GOD IS SO GOOD! You better believe that I will never pass a Shriner again without putting something....even if it's just the change in my ashtray....in that red velvet hat!

The next day was a whirlwind of getting paperwork filled out and faxed and putting together the medical records I thought they would need. (I have them all in a notebook, but the notebook is about three inches thick, so I didn't think he would want the whole thing.) I will keep you posted. This all happened right before the weekend...a long weekend, at that. :-)

After perusing my blog today trying to find posts pertaining to Clara, I remembered how much I really do enjoy blogging. However, after a 6-8 week bout of mono, two and a half months without a computer, and then life, in general, I have accepted the fact that I am not going to "catch up". I am not even going to make any promises about blogging more frequently. I will say, however, that it has been good to be on, even if just for today, and I hope to become more regular again. :-) Thank you for reading this one, and for being concerned about Clara. Your love and prayers are greatly appreciated!

Just for fun, here's a little pictorial update:


Fun at the beach...Silver Beach, of course!

Mother's Day:

 A sweet cake for Diana and me, who was visiting with my brother, Thomas, and Noah, my nephew.

Jeff and the girls took me to a Mexican restaurant right on Lake Michigan. The view was free. :-)

Visiting a friend's kitties:

My animal lover.

 It doesn't get any cuter than kittens!

 Emilie enjoyed the kittens.

 Alyssa certainly enjoyed the kittens.

 Clara could nurture a fence post, but prefers kitties.

 And Megan.....well...she has her own special kind of touch.

Church party:

 Clara in the hammock with one of her buds. These two are two peas in a pod!

 Just a really cute picture that I love. (Pay no attention to the primping teenager in the background.)

We're sharing a garden with my friend, Angela, at her house:

 

Planting time

Memorial Day with the American Heritage Girls in the Buchanan Memorial Day Parade:

 Before the parade...

 Ready to go!

We marched right behind the Boy Scouts.

This whole family put their hands over their hearts when the scouts walked by with the American flag (Dad put his hand down before I could get my camera out.) It was one of the most touching things I've ever seen. It's always a blessing to see patriotism in action.

Have a blessed day!

Much Love!!
Jeannie

Easter Memories

As I was looking through some pictures today, I realized how incredibly behind I am on updating everyone about life events in the last few months. Some of them will probably just have to go "un-blogged", but some of them are just too special not to share....even if a little late. Easter is one of those.

As a child, Easter was always one of my very favorite days. Although I can't say I remember ever commemorating the real reason for Easter (besides the obligatory church service on Easter morning), it was definitely a wonderful time with my family, full of wonderful memories. There was, of course, always the new Easter dress. My Nanny would always either buy me one (or two), or send us the money for one. When we arrived at my Nanny and Papa's house, it was always full of the aromas of ham, green beans, and a host of other wonderful smells. Every year she made a bunny cake that she would let me and my cousins frost, sprinkle with coconut, and then decorate with jelly beans....spiced jellybeans. YUM! After lunch, there were always plenty of eggs to color, and plenty of my cousins to color them with! When the eggs were all colored, the men would go to the backyard to hide the eggs, and my cousins and I would frantically try to make our way to the bathroom so we could stand in the tub and peek out the window to see where the eggs were being hidden. Someone would always catch us....although I don't know how with the squeals and giggles....and make us go sit in the living room for the AGONIZING five or ten minutes it took to get the eggs hidden. After "On your mark, get set....GO!", we would hunt the eggs in the backyard underneath the big old oak tree (that is, sadly, no longer there), and scramble to find the coveted prize egg before my rambunctious, very driven, boy cousins. :-) One year, the prize egg was just a regular egg covered in aluminum. I remember climbing up onto the concrete picnic table in the back yard and seeing aluminum in the dirt of one of my Nanny's flower pots, but for some reason, it never registered that THAT was the prize egg. (I was, obviously, just as observant and detail-oriented as I am now.). When all of my other cousins and I had waved the white flag of "surrender" for finding the prize egg, my sweet Papa (who is also not there anymore....totally have tears in my eyes right now) got it out of the dirt, and exclaimed that he got all the money for the prize egg. The jackpot was somewhere in the neighborhood of $.50, but to me, that was FORTUNE! Being the very competitive kid that I was, I begged and begged my Papa to let me have the prize, and being the softy that he was, he gave in and let me have it. :-) When the eggs were all found, we would sit around in the back yard on the old swing under the tree, passing around a salt shaker to sprinkle salt on our freshly peeled eggs before we ate them. One year, my Uncle Steve (a character and a half) who LOVED/LOVES to pick on me, was making us all laugh by busting his eggs on his forehead to crack them. Not wanting to miss out on a chance to make everyone laugh, I picked up an egg out of my basket to crack on my forehead, too. What I didn't know was that Uncle Steve had put a raw egg in my basket.

You can guess the rest.

I laughed then, and still do when I think about it. I could go on and on with the memories.

As the years have passed and my family has changed, Easter traditions have had to change over the years, as well. With so many parents, grandparents, and great-grandparents, by birth and by law, we have about a 5 year rotation that we have tried to keep up to make sure we spend at least some of our Easters with everyone. In the midst of it all, I have tried very hard to make sure that Easter is a happy day for my girls. It has been hard to make a lot of traditions, being at a different house (or three) every year....but hopefully it has been happy for them,.

Since moving to Michigan, we have been able to change that somewhat. While we miss our families, it has been kind of neat to have a holiday that we can spend at home with our girls, creating our very own traditions. For the past two years we have invited friends over. So fun! Last year we made the traditional bunny cake, but this year Alyssa said, "Mom, if Easter is not about the bunny, and we don't celebrate the bunny, then why are you making a bunny cake? Couldn't we make a Cross, or something." Good point. We also colored Easter eggs after dinner...and added plastic ones with candy, and ate the traditional Easter meal of ham, potatoes, deviled eggs, and green beans...to name a few. One of the hardest parts of any holiday for me has been that I LOVE to cook and entertain, but when you are traveling the state, you don't get to do much of that. It has been a pleasure the past two years to get to do that. Easter has not been quite the same without mine and Jeff's extended family, but it has been so fun to have that time with our girls, and to make memories with precious friends here in Michigan.

On to this Easter:

My dream this year was to smock both of the little girls a bishop-style dress. After all, they are within about two years of being too old to wear a bishop style dress, and it has been a dream since they were born for them to have matching ones. Truthfully, I would rather buy them, but they are very expensive, so I decided this year was the year I would make them. Unfortunately, however, the company that I ordered the pattern and supplies from were not feeling my urgency and the pattern didn't arrive until 5 days before Easter. Yep, took them a month and a half to ship a pattern. So I followed my life's mantra:

"Blessed are the flexible, for they shall not be bent out of shape"....

and made a different one. Actually I made the three youngest girls a dress. Alyssa found one in the store she loved....having  the model figure does. So.....here they are:

  I have a new friend at church that plays the flute. Woo-hoo! We played a duet for the offertory Easter morning. And, no, we did not talk about what we were going to wear. I guess great minds think alike. :-)

 The hunt is on!

 How many red-heads does it take to get the egg that some Daddy thought it would be VERY FUNNY to put WAY HIGH UP!?

 Megan goes in deep for her find.

 The little girls went straight to their playhouse with their loot. Look at Clara's face. Cracks me up. :-)

 Megan and Marley...sweet friends.

 It has become a (maybe not too good) tradition to take a picture of all the kids in front of the garage. The good part is that we have a picture of all the kids here two years in a row. The bad part is that the sun is right in their eyes. :-) Here is the Bryant Bunch with the Finch Gang. Good looking group of kids, don'tcha think? :-) Alyssa looks like she should be theirs with that beautiful red hair.

 And the Cross cake. 

Since we were already modifying the "bunny cake" tradition, we also opted to remove the coconut. I like coconut, but some people have a severe aversion to coconut. I had a friend in Georgia who wouldn't eat it because it reminded her of fingernail clippings. Nice, huh? You're welcome. That was free. :-) One thing I did this year that I rarely do (that I would like to consider making a tradition)....I used a cake mix and canned frosting. SO MUCH EASIER!

As wonderful as all of this was, my most precious Easter moment came the day before Easter as I sat at the dining room table finishing up some last minute projects. I had the wood-burning tool out, cutting some ribbon for hair bows, and Clara was sitting on the table watching me. Yes....sitting ON the table. It's always been one of her favorite things to do, and I enjoy her company. She was talking on and on (again, not unusual) and asking a hundred questions about the wood-burning tool, a relatively new toy in our craft arsenal. I was explaining to her that it gets hot....even hotter than an oven, and that she would not be allowed to use it for a very long time.

She said, "Yeah, because you don't want your precious darlin's to get burned, so you use it for us.

And then, as if a 400 Watt light bulb had gone off in her head, she gasped and said, "Mom! You're just like Jesus."

My first instinct was to stop her and immediately correct her to tell her that I am nothing like Jesus, as hard as I try. It felt almost blasphemous....impossible....to be compared to such a perfect man.

Thankfully, God shut my mouth, and Clara continued:

"You get hurt so we don't have to, just like Jesus died on the cross for our sins so that we don't have to."

Have I ever mentioned that these children take my breath away sometimes? She gets it. She really gets it!! I pray that is a truth that continues to sink deeper and deeper into her heart as she grows into her adult years. Oh, to have realized that at such a young age. What would my life be like now? I praise God for His grace in my life and in the lives of my children. I pray He continues to let His truth penetrate their hearts and minds so they will grow to be like Him.

And maybe they do listen to us sometimes?? Who knew?!

I hope your Easter was blessed!!

Much Love,

Jeannie

Chipmunk Craziness

When my oldest, Alyssa, was born, there was no such thing as "blogs". The best you could do was a mass e-mail to grandparents to update them on the status of their grand babies (and I was not terribly good at that, even), so it is safe to say that most of you now reading my blog really don't know my Alyssa very well, unless you have just known me and her for the last fourteen years. She is quiet and understated, can be a tomboy but knows when to be a lady, and, overall, is a pretty good kid.

Her one most distinguishing quality, however, is her love for nature. When she was just little....like, still crawling....she would find a lady bug or caterpillar on the ground and pick it up with the most gentle touch. I never EVER saw her 'squish' anything. She used to keep about 6 bug catchers in her room, all full of something at  all times. I have seen her cry when she realized builders were cutting down trees to build a house, and she will go to any length to help any animal.

That sort of brings us to this story. Yesterday, while Emilie and Clara were in their American Heritage Girl meeting, Alyssa was at her discipleship time, Jeff was teaching his Tuesday night Tuba Ensemble at Notre Dame, which left me and Megan. One of our favorite things to do during that time is to go visit Angela and her dog, Beau. (We say we have joint custody of him.) :-)Angela was not home last night, but Meggie and I still let Beau out, took him around the neighborhood for a nice long walk, and then ended up in the back yard with his favorite outdoor ball. Megan and Beau could entertain themselves for HOURS with each other and that ball. We had already been out there for about thirty minutes when Megan threw the ball into the brush that is an empty lot right beside her house. It was taking him a while to find it, so I went to help. Not a minute after I got up, we saw Beau running through the brush and we heard a loud squeaking.

Megan exclaimed, "Mom. He found the ball!!!"

For a second, I thought he had, but it wasn't long before I realized that the squeak coming from Beau's mouth was not the squeak of the ball . About that time, I could see Beau (he is a dachshund and we can only see his tail in that brush), and not wanting to burst Megan's bubble, I said, "Ummmmm, honey, I don't think that's a ball."

We quickly realized that what he had in his mouth was not a ball, but a baby chipmunk.

ACK!

At first Megan was very happy, thinking she could just take the chipmunk from Beau's mouth like she does the ball and get the chance of the lifetime to play with a REAL CHIPMUNK. (Don't worry. I would not have let her. That's just how her four year-old, Pollyanna mind works.) The closer we got, however, we realized that he was not letting go of that little guy.

OK. So picture this: little short Beau sitting on the ground, refusing to make eye contact, with a GIGANTIC wad of nest/fur hanging out of his mouth, in addition to the little squirming, squealing chipmunk.

When we really realized what was happening, Megan started bawling and hanging onto my leg. I started telling Beau to "Drop it!". I don't know why I thought that would work. It doesn't even work with his ball, but at least I tried. When the chipmunk quit squealing, Beau would look at us out of the corner of his eye and rearrange it in his mouth to get it to squeal again....like he was taunting us. About that time, I started gagging.

Realizing that my precious, squawling, pig-tailed four year-old was about to be thrown up on, I said, "Hey Megan, why don't we go in the house and clean up a little bit. "

She was not totally sold, but reluctantly agreed.

All the way into the house, she was wailing like a southern mourner.

"Why did Beau have to do that?? I didn't want THAT to happen!"

"That poor, poor baby chipmunk."

"We need Ms. ANGELAAAAAA......"

And then she really lost it.

I took her to the restroom to clean her face up a bit and try to distract her, at which point she looked right at me and said,

"Mom. I need some me, myself time."

"Ummmm....okay." Me, myself time?? Can someone please tell me....What does a four year-old do with me, myself time? And how do I get some? Do I just ask, like she did?

Anyway, I digress.

It was time for us to leave, so I walked outside to get Beau, realized he was STILL carrying that blasted chipmunk around, and then...the cavalry. Ms. Angela got home. However, not even she could snatch that poor little rodent from the very locked jaws of victory, and within a few minutes, he had
          swallowed.
                    it.
                      whole.

Pardon me while I puke.

I told her that she could no longer blame my children for his overweight condition because it was quite obvious that he could take care of that all by himself. :-)

This brings us to Alyssa. (You were wondering, weren't you?)

When we all got home, Megan could not WAIT to tell her war story. While the rest of us grimaced and groaned at the whole thing, I looked up at Alyssa to find a look of sheer horror on her face.

"Mom. We've got to go save the rest of the chipmunks. Will you take me?"

"No I won't take you! It's almost 10:00 and I am TIRED!"

"Can I text Ms. Angela?"

"OK." (Should have asked her why)

A few minutes later we got a text back from Angela that read:

"R U Crazy?? Beau and I are in the bed!"

I texted back:

"Yes, she is crazy. Sorry we bothered you."

Then Alyssa popped into action, doing extra chores....even doing Emilie's chores....hoping I would change my mind.

When she realized it would not be that easy, she totally fell apart. I mean....FELL. APART.

My heart really did go out to her, but really? Bring home baby chipmunks....wild animals....to THIS house, that we are already crammed into, to rehabilitate, and in the presence of a very curious four and five year-old.....I just didn't think I could go there. Besides that, her Daddy very definitively said, "No."

After a very long time, she finally cried herself to sleep. This morning, however, it was the first thing on her mind. She woke up early, did extensive research on the little critters, made charts and graphs and asked if I would reconsider. (Did I mention that she is Type 'A'?)

My compromise:

I agreed to find someone who rehabilitates wildlife to ask them what to do, which I did, but they said to leave it alone. The rehabilitator did tell me, for peace of mind, I could go back and check the nest... just to see. If there were live babies in it, Mama was still around and they needed to be left alone.

So this afternoon,with her Daddy's permission, in the pouring-down rain and 51 degree weather, in my shorts and flip-flops (the perfect all-purpose shoe), I took my very tender-hearted teenager to check on the nest. She started dancing around, exclaiming, "I can finally make a difference in the world".

I will not even go there in this blog.

She had a box fixed with towels all ready to rescue, if needed, little abandoned chipmunks, but when we arrived, the nest was totally empty. We are choosing to assume the best, that either 1) Mama moved them, or 2) They were big enough to run away on their own.If you know anything different, please don't tell us. We like ignorance...it really is bliss.

As she stood out there, very tenderly looking under all the fur, she said, "Mom, I'll bet you never thought you would be doing this one day."

I said, "Ya know, babe, before I had you, I never would have believed I would be out here doing this; but knowing you for as long as I have, being out here like this doesn't surprise me in the least."

We didn't save the world today, or even a nest of baby chipmunks, but I would like to think that today was one more building block for a lifelong relationship with my daughter. Before she walked out the door for church tonight, she said, "Mom, thanks for being a part of all my craziness."

It's just a family affair, dear. It's what we do best.

Crazy.

Much love!!
Jeannie

Clara and the Geneticist

I know I have been completely inconsistent with keeping this blog up-to-date. I am really hoping to catch things up and be more regular VERY SOON! It just seems like life spins and spins and spins.

However, there are so many of you who pray for Clara and ask for updates on her, that I didn't want to wait until I had caught everything else up before giving you an update on her latest visit with the geneticist.

The bottom line is: She is stable. Dr. K said that she looks great. Pending the results of her blood work (and we don't anticipate any surprises there), she will not need to see her for a year. Clara absolutely adores Mr. and Dr. K., so there is tons of giggling. But between all the giggling and the fun, we did get some information. :-) As hard as it is to believe, Clara has been undergoing treatment for her rickets for a year! Unfortunately, there are still no signs of healing. Her body is extremely phosphate resistant and wastes everything we put into her. In the meantime, her right leg is turning in worse and she is increasingly in more pain. Dr. Kendall is not the one who treats her for the rickets, despite being the one who (finally) diagnosed her (praise God), but she recommended that we get a second opinion. It may be that we are doing all that we can, but she felt it would be good to find another specialist in the field (and they are few and far between) and consult, even if it's just for our peace of mind. She gave us some websites to research and said it would be best to find journal articles written on the subject to see who is doing research and see one of those doctors....even if we have to fly across the country. We need to get the rickets healed up for many reasons, including growth, pain, etc., but her orthopedist cannot fix her right leg until the rickets is gone. In the meantime, damage is being done to her lower back and hip. Talk about feeling out of control.

As far as the mito is concerned, Dr. K said that if Clara had responded to the rickets treatment and all of her symptoms had been resolved, she could very comfortable wean Clara off of her medications and consider the possibility of removing that diagnosis. However, since the rickets has not been resolved, we cannot rule out mitochondrial disease, therefore, she has to continue on on with her mito cocktail. She said that the mito meds could be the reason she is so stable and feeling as good as she is, so we don't want to mess with that. I agree.

So...we continue on. Her treatments are remaining the same, for now, and we are pressing on to find out all we can to make our sweet girl better. I will be diving into medical journals to find her another endocrinologist, even at the risk of upsetting the one she currently has. If I have learned nothing else in the last five years, it is that sometimes you can't worry about hurting a doctor's feelings when it comes to the well-being of your child. So I will press on.

I will update more later. I cannot tell you how thankful I am for so many who love Clara and our family. Thank you for your love and prayers!!

Have a great day!!

Jeannie

P.S. This was typed extremely quickly, so please forgive any grammatical errors. :-)