Cucumber Sandwiches

Today I made a new recipe that I got from a friend. It was excellent, but before I tell you about it...I have an ethical duty to warn you that this recipe should have a Surgeon Generals Warning about its addictiveness.

I am knee deep in cucumbers from friends and family members gardens and I'm a bit too busy to do serious canning (but I did do some freezer pickles). So I remembered that a friend had a recipe for cucumber sandwiches, she gave me the recipe (without a warning) and I made this mixture last night for today's lunch. It was a hit!

1 block of cream cheese
1 packet of Italian dressing mix (dry)
1/2 cup mayonnaise
Mix above and let it refrigerate overnight. Spread on choice of bread (we used rye) and garnish with a sprinkle of dill weed over slices of cucumber.

However, when you tell kids that you are having cucumber sandwiches, well...they have doubts. Then our housekeeper (aka "househero") had never heard of them. She had such a a polite but funny reaction. She was REALLY concerned about our food budget if we were down to eating cucumber sandwiches.

After lunch Grace kept going back for leftovers and using the sandwich spread as dip! It is always fun ...and in this case addictive....to find new ways to eat garden fresh goodies!

We remember the fish, which we did eat in Egypt freely; the cucumbers, and the melons, and the leeks, and the onions, and the garlick--Numbers 11:5

ADA: An Alphabet Soup Day

Happy 20th Birthday to the Americans With Disabilities Act. I have fond memories of watching the news coverage on the proposed bill while in high school and being intrigued by the man in the out of place cowboy style hat.

Then in 1994, I went from a casual acquaintance with the new law to a deep, meaningful relationship. I attended many hours of trainings from DREDF, HUD, NCIL and others. I studied boring pages of law, recommendations, best practices, technical assistance and application. I met the man in the cowboy hat & learned his name was Justin Dart. I learned that the press never adequately captured his zeal, his inspiring speeches or his devotion to the value of all human life. I learned he was largely responsible for "selling" the ADA to congress and American citizens.

In 1994, I could never have guessed that the deep relationship with this and other disability laws would be SO long lasting or be paying for things like Grace's braces....Thank you ADA and all my access-impaired and access-aware clients!

Get involved in politics as if your life depended on it, because it does. -- Justin Dart

I count the good days in my life from the time I got polio. These beautiful people not only saved my life, they made it worth saving.--Justin Dart

Sunday that wasn't

Today did not seem like Sunday at all. My Durango would not start this morning so I had to drive Ed to Parsons, KS to meet the other teachers going to the conference so I could have his car to use. I got home just in time to take two kids to worship at church and drop off my food for the potluck dinner. Then I rushed home for Nate's feeding and meds. I got Nate settled and got the other kids and babies fed, just in time for Corrine to get home and get packed for church camp. I got her delivered to Grandma since she is going with Grandma's church to camp. Then I rushed home to medicate and feed Nate. People from church stopped by a delivered food from the potluck which was VERY well timed. The twins ate sweet potato, green beans and chicken. Vanessa had macaroni and cabbage. Matt and Hannah had spaghetti. David, Grace and Jon had a bit of everything! Plus they brought cake for dessert...a favorite food of Jon & Hannah. Then bathes and bed .....and Grace & I started cleaning! Now my bedtime!

For the Son of man is Lord even of the sabbath day. --Matthew 12:8

St. Louis

The trip to St. Louis was busy. We got the lab work done for Jon. Jon had an Upper G.I. that determined he will not need a fundo when he gets his new feeding tube. We met with the surgeon who added more vitamins to Jon's meds. He will draw new labs on the 11th and select a surgery date based on those results.

Before we left St. Louis, we were able to pick up a crib for Jon. A classmate from high school had one that his family is done using. It is REALLY nice and we put it together as soon as we got home. Jon slept in it and he likes the security it offers. That crib is such a blessing!

New Diagnosis+Prayer=New Treatment

Today we got that call from the doctor that no parent wants to get....Jon's lumbar puncture found a rare disorder that is most likely the main cause of his cerebral palsy (CP). The new diagnosis is Idiopathic Cerebral Folate Deficiency (CFD). This is a degenerate condition if left untreated (or if the treatments are not successful), but if successfully treated, it can be a regenerative (regain function) condition.

It is a condition that occurs when the brain DOES NOT absorb regular folic acid therefore a medication (AKA FOLINIC ACID) must be given. Regular Folic Acid gets into the brain through a receptor. Sometime when the child is a baby (or in the womb), no one is sure, a virus comes into the body and binds itself with that receptor, therefore the body creates antibodies against the receptor. However if the doctor gives one of several special medications (FOLINIC ACID) it uses ANOTHER receptor to get into the brain as the needed folic acid.

This condition was discovered in 2004 and little is know about the limits/possibilities for regaining function. It seems that the older the child, the less function to be regained. However, a 2008 study had a 16 year old with CP who had just been diagnosed after starting to have seizures and he made miraculous improvements (no seizures, better muscle control/cordination, vision improvements, and learning improvements).

We will be in St. Louis today do more lab work so the doctor can choose the medication and dosage that is best for Jon. Please join us in praying for miracles!

For the eyes of the Lord are over the righteous, and his ears are open unto their prayers: but the face of the Lord is against them that do evil. --I Peter 3:12

Work & Blessings

We decided it was time for me to get back to work and pick up some odd jobs....yes, obviously there is no work to do at home...joking. However, we decided that we both better start picking up some extras so we can get the budget healthier more quickly.

Today was my first home visit day and it was not great. 95 degrees by 9am and I was visiting families without air conditioning. I ended up coming home and sneaking a nap before we celebrated Jon's birthday tonight. However, today has me ready to start teaching "air conditioned" college classes again on the 9th! I was dreading starting to teach so early in August, but today cured my dread!

In the mail today was two blessings. One was my teaching paycheck arrived two weeks early...yes! The other was a much appreciated gift to help with expenses, which means gas for the Prius for this week's clinic visits (in Little Rock tomorrow & St. Louis Thursday) is covered without reducing our recovering budget.

One-On-One Time

Ed and I try to get some type of one-on-one outing with each of our kids at least once every 3 months. The kids call it "mommy & me" or "daddy & me" time. Since adding the new family members, we have struggled to get every one's time scheduled, but we are getting back on schedule!

Yesterday I took Grace to Joplin to the beauty shop and then to McAllister's for salads. It was nice to get to hear her thoughts and ideas without any interruptions! I learned that she REALLY wants to be home schooled again this year, which is great! I REALLY want to have her home schooled again. The only problem is I budgeted for only Corrine and with a few budget busting medical bills, well I just don't know where the extra funds will come from before school starts. So now I have something new to pray about and to try not to worry about, but I look forward to seeing the answer God gives. I'm calling the curriculum place that I use on Monday and hopefully they will have some ideas too.

Today I took David (& my coupons) to the movies to see Despicable Me. Then we went to McDonald's for a Happy Meal. It was such a special time. During the previews, David patted my arm, leaned over and said, "This is really nice, just us. Thanks mom". Then after he ate his Happy Meal in record time, I suspected that he must have been really hungry so I asked if he needed more to eat. David said, "That's what makes you a great mom, you always know what I'm thinking. Can I have more fries?" (This stuff just melts my heart when he says it because he is so sincere.)

As he ate his second order of fries, I asked him if he wanted to be home schooled this year too because I've learned if one asks, then the others are probably thinking it too. He said no because he like riding the bus and seeing his friends everyday. My fiscally responsible side was relieved, but my education side had secretly hoped that he would want to be home schooled too.


David has struggled in reading and he is just starting to understand who God is and why He cares for us. I know homeschooling would give me more time to help him. However, Ed and I have always believed that each child is unique in their education needs so while David was telling me what he liked at school, I knew that a home school day would seem like an eternity to such a socially motivated boy. Then my thoughts turned to wistful thinking of longing for a good Christian school for David.


As my thoughts tried to drift to discontentment, I quickly caught myself and prayed a quick prayer, "Lord you are preparing David for Your purposes. If a Christian school is needed, You will provide. If home schooling is needed, then I know You will change the desires of his heart. Please protect him as You prepare him for Your plan and purpose for his life."

Then as the house quieted this evening, I realized that I needed to say a similar prayer for Grace. I can pray for funds for curriculum, but what if that is not what God needs as her preparation for His service. So tonight I pray, "Lord, give me the resources to home school Grace if it will best prepare her for Your service. Change the desires of her heart, if it would not be the best preparation. Protect her as You prepare her for Your plan and purpose for her life. And help me be content with Your provision and not wanting more than my kids need. I do trust You and know that You know better than I what they need."

If a son shall ask bread of any of you that is a father, will he give him a stone? or if [he ask] a fish, will he for a fish give him a serpent? Or if he shall ask an egg, will he offer him a scorpion? If ye then, being evil, know how to give good gifts unto your children: how much more shall [your] heavenly Father give the Holy Spirit to them that ask him? --Luke 11:11-13

Nate

Tonight Nate tried to pull up to the baby food bin. He actually got his bottom off the floor and was almost completely on his knees! It is great to see him continuing to grow and learn! It just makes me praise the Lord for His care that He has brought Nate to this milestone that seemed impossible!

On a side note: I actually think I may be starting to get ahead on my to do list. I finally started our 2010 Christmas DVD tonight. Usually I do it monthly and that way it is just a few hours a month to complete it. It is going to take me 10 to 12 hours now to get where I would be if I had been working on it monthly.

Senye, Ala nou kontan se pa nou k’ap kenbe ou men se ou k’ap kenbe nou.

Translation: Lord, How glad we are that we don’t hold you, but that you hold us. — Haitian prayer

Less Worn...

It has been a productive couple of days thanks to Ed's help with the kids and some well placed naps for me. It is so nice to see my stacks sorted, organized and dwindling as I get work done! Still much to do, but I'm actually pulling ahead of the pace that it is coming at me.

Luke and I hung out in the rocking chair tonight for an hour or so after the storm woke him. It was nice to get some cuddle time in and even nicer to take time to go downstairs to my favorite rocking chair in the family room!

A big boost to my energy came from Immigration today when we got our official letters to get the boys adoptions done here in the US. We had already started this final step, but I know the judge will appreciate having a letter to him about the process and how the earthquake in Haiti changed things. Now we just need to hear on Nate!

Feeling Worn

I'm really feeling worn for the last few days. I hate it when this happens...running, being away from home and trying to get good sleep, coming home to the mess (despite Catherine's best efforts), ants invading AGAIN due to the mess....oh, the list gets pretty long so I'll stop it here for the reader's sake.

It is hard to pause and be calm and satisfied with the list continuing to click items one by one through my head. So much I must do, so much I should do, so much I want to do....surely I'm not the only one that gets to feeling like this! Praying for calm and/or provisions to make it through the storm!

He maketh the storm a calm, so that the waves thereof are still.--Psalms 107:29

Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved.--Psalms 55:22

Jon

Jon and I were joined by Grace for a trip to St. Louis Children's for two days of medical tests. Today was his first day NPO (no food by mouth) and Jon got really dehydrated. I had been worried about this happening, but I was told it wouldn't be a problem. However, it was a problem and they ended up admitting him and starting an IV so he could handle tomorrow's NPO better.

I'll be glad to get home tomorrow night. I'm missing everyone..especially the babies.

Frustration!

I am ALWAYS amazed how frustration can creep up and ruin a perfectly good day or week! I was having a perfectly good day, despite knowing it is bill paying day...until one bill turned into a mess! Enough of a mess to cause frustration to take over the rest of my day!

Since Ed & I are normal folks financially, we have to pay big medical bills over months instead of in a lump. Today as I sorted and organized the monthly bills there was a bill from St. John's that I had been waiting and checking in on since Nate's October ER visit. So I called to set up payments only to find out that the hospital sent in to collections months ago! We had not received any notice or anything. After I expressed my concerns about this business practice, I was told it was sold to collections as bad debt so soon because the hospital sold November 1st. The lady from hospital billing, who worked for the hospital before and after its sale, gave me the number for the collection agency that they sent it to and I called them. Then the FUN began!

I admittedly do not know much about collection agencies, BUT I am confident that most people do not call them up and say, "I have a bill that you are collecting on, but I have not heard from you and I want to get it paid off". With this simple statement, I was lower than trash and was amazed that trying to make a payment was so hard! First they had to find the bill, then they wanted to know why I hadn't responded to there letters or calls. Turned out that they had an address from 4 years ago and a phone number from 7 years ago on file. Then they wanted to get info to garnish Ed's paychecks because this bill was "so far outstanding". I just wanted to make a payment, but "no". I asked to talk to a supervisor, but no one was available. I finally got them to take 10% of the bill electronically, which I was told would not stop them from garnishing Ed's check and got them to agree to send me a statement in the mail since I just have a 1-800 number and not even a name for the collection company.

Now I am trying to calm my mind and return to the happy place that I like to live...knowing I now have a new "friend" at a collection agency....aye yi yi! What an afternoon!

Birthday And Fireworks!

Vanessa turned 8 while we were on vacation so we celebrated tonight. We had pizzas for supper with toasted ravioli and mango punch. Instead of making the crust & sauce, I bought a pre-made crusts and sauce kits to save on time. I thought it was terrible tasting and apparently the kids thought so too because there was leftovers. Vanessa opened her gifts and got two necklaces, Cowgirl Jessie, Barbie (from Toy Story) and clothes. David immediately had Buzz and Woody out from his toys and we were knee-deep in pretend play. Everyone was complaining when I interrupted them for cake, but David quickly added, "and ice cream!" With his exclamation, the stampede to the table began. As soon as the table was cleared, we all headed outdoors for fireworks.

Our neighbor has a fireworks obsession and once a year his wife lets him put his obsession into action in the form of a neighborhood fireworks show. He blocks off the street and for about 30 minutes, and he treats us (and any of our friends who stop by) to a fireworks show that rivals most municipality's celebration. Tonight was the night chosen for this year's show and it was amazing. I think each year the explosions of color get bigger and higher in the sky! I loved it!

With a couple exceptions, our kids loved it too. Matt was amazed by it and wanted more. The twins were in awe. Jon cried from start to finish, but cried harder when Grace offered to take him inside....it was like he loved to be scared by it! Nate loved it until one of the fireworks made a whistle sound and then he was done with it. Ed took him inside where it was quieter (and air conditioned) and they watched through the window.

Vacation Wrap-Up

The morning of the 4th was spent hurriedly packing in pouring rain and checking out of the Fitzgerald Hotel (which by the way comes highly recommended by us). Then we had lunch at the reunion and spent the afternoon visiting while the kids played. About the time everyone was gathering to eat supper, Ed and I packed up our crew and headed home. Jon had not liked the crowd at lunch and he was already starting to get upset with the crowd pouring in for supper.


So we traveled until just over the boarder into Missouri, then we fed everyone supper and got everyone comfortable in hopes they would sleep most of the way home. Nate stayed quietly awake for most of the trip. The twins, Hannah and Vanessa snoozed in my car. Meanwhile, Matt sang so loudly in Ed's car that Ed insisted we stop and get him chicken nuggets in St. Joseph so Matt would have some food in his mouth and STOP singing! However, as soon as the nuggets were gone, the intermission was over. Matt sang loudly until Lamar (about an hour from home). Jon and David napped as best they could with all the singing and Corrine stayed awake to talk to her dad the whole trip so "he wouldn't fall asleep".


We got home around 1:30am. (Ed took headache medicine.) We changed diapers and got everyone settled in. Then around 2am we started unloading the essentials and discovered that Nate's feeding pump needed charged before the 6am feed. So I went to bed at 2:30am and my hero Ed finished unpacking everything so he could find the power cord to the feeding pump. So as I got up at 6am for the feeding and medications for Nate, Ed has only been in bed a few hours.

How is it going?

Lots of people are asking me how our first vacation with 10 kids is going...well, I'll tell you the truth, its the hardest that I have ever worked on vacation! The four hours at the reunion today were the most relaxed that either Ed or I have been since we started packing. Of course this was largely thanks to the family grabbing up the twins and Matt...even helping change diapers!

Yesterday we took the kids to the Henry Doorly Zoo which was awesome as always. The weather was perfect for Nate because it clouded over and there was a nice breeze. Nate treated the zoo like a checklist. He came; he saw; and he was ready to see what was next. Jon was scared of everything, which was a lot like Vanessa two years ago. However, Jon was even afraid of the fish! He acted like we were nuts coming to see these wild animals. The twins loved it and were SO patient as we weaved through the crowds. We had Matt on his leash, and he kept grabbing the end of the leash and pointing us where he wanted to go.

Today Ed took Corrine & Grace to the Bodies exhibit which is visiting in Omaha right now. They were really impressed with it. Grace was amazed by the details of the design of the human body and felt it was a great arguement for a Creator. Ed especially appreciated the presentation on embryo to fetus development. It gave him a once in a lifetime teaching moment on pro-life vs pro-choice issues. Corrine being our future doctor loved it all.

More reunion tomorrow and probably a few more stops before we head home....exhausted!