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