St Louis EXPO and Home Again

After our trip to Atlanta and the horrible night’s stay at the hotel. We chose to head north Monday rather than stay one more day. That caused us some serious issues monetarily but we didn’t know about that until Wednesday morning. Turns out the hotel ‘holds’ both nights money until when you check in. We had to wait days until the money was released making the ending of our vacation tight because I hadn’t planned to pay for an extra couple hundred dollars! We did get the money back in the end.

On the road reading our newest homeschooling book, Flying Creatures of the Fifth Day: Exploring Creation with Zoology 1

Monday night we traveled north towards Tennessee. Chattanooga, TN met us at the border. We got there as the sun had set and the city was laid out all alight. What a beautiful sight!

We passed an exit with lots of hotels thinking ‘oh we should try this one…’  but we were not able to maneuver through traffic fast enough. That’s okay right? We were on the edge of a large city and on the main highway through town. How wrong we were!

Exit after exit passed with no hotels. By this point we had been in the van for several hours and the kids were done for the day. Finally in South Pittsburgh (very funny considering we live south of Pittsburgh) we found a Holiday in Express that had a room we could fit in. It was a very nice, clean, loved the people working there.

The only big disappointment we had with the hotels we liked so far was no pool. The kids were really starting to get antsy about pool time. We promised them we would find a hotel with an open pool for the next day.

Tuesday we traveled through TN. Just south of Nashville there was a really nice gun store we stopped at. I haven’t had a gun in my hands since the stroke. I have asked hubby for a hand gun but I needed to feel them in my weak hand to know what would work for me. We stopped and I got to try some handguns.

***PS for those that don’t know I was a national level competition handgun shooter. I once tried for the Atlanta Olympics but fell just shy of making the team :( Any way I trained for years. Up to 8 hours a day for several years. I even went to the Olympic Training Center in Colorado Springs, CO for training and competitions.**

The not feeling good nap :(

The salesman did not know that. I picked up my favored .45 my hand was too weak to hold it securely or steady. The hand started shaking almost instantly. The salesman must have thought that was a sign of being scared. He suggested I get some firing range time in before I gave up on a .45. I was nice to him and told him I had lots of range experience. After trying some other handguns I am happy with my decision on my dream gun. Dear salesman women can be well versed in weapons just like men can be totally inept. Each person is totally different!

After that little stop GR and R started talking about how they didn’t feel too good. By the time we got to Nashville we chose to not go on any sight seeing trips because

Finally pool time!

the kids had upset tummies. We traveled on through TN and into southern Illinois. We found a wonderful hotel next to a brand new sports stadium, so it was new too AND had an open pool! But since it was in early spring and midweek we got a great rate!

That evening the ickies moved in. Gr threw up. R got a nasty headache. The next day we stayed in the same hotel because no one felt good enough to travel and see the sights in St Louis.

The St Louis Arch

Thursday morning we drove up to St Louis and saw the St Louis arch, in the pouring rain. We sang MISSISSIPPI the whole way across the Mississippi river. Talked alot about the pioneers and move westward without fast speedy vans. It was lots of fun.

The family helped me set up my table and my wonderful assistant Bella helped me for the first night of the convention. I met lots of wonderful families and was so blessed and honored to have gone!

That night back in the hotel. The pool was open. The kids swam once again with daddy. But now Gr was really sick, R and M had a fever, G was now sick. The next morning GR threw up coming back from breakfast and never quite perked back up. Chris had to drop me off at the convention and go right back to the hotel and let the kids lay down.

That day, Friday,  was wonderful. The workshops went well. I was VERY busy all day long.

That evening ALL the kids were sick. Bella got sick multiple times. R, GR, M,and G all got sick. I had to call the manager so many times we got to know each other. Fresh sheets and towels all night long until 4 am in the morning. Complicating this was that in order to have our whole family stay the hotel had to break us up into two rooms. So I was on my own with sick kids and Chris was on his own with sick kids. Funny moment of the night came when we met at the door way each of us awaiting the manager and more linens.

The next day I had a workshop and I was the final speaker for the day. Chris and I thought about what to do. Should I stay in the hotel and get sleep so I didn’t get sick. The more we talked the more certain each of us were that I HAD TO TALK. Chris told me, “There is someone going to listen to your talk today that desperately needs you. God will protect you.”

God did!

My final talk at the St Louis Home Educators EXPO

I went and did my workshops, talked with many families, ended the day on a high note of finishing the EXPO with my talk. Chris and the kids showed up feeling and looking much better at the end of the day. I was not exhausted and sick like I normally am if I don’t get a full night’s sleep. I was protected from the physical fallout of the night without sleep and I didn’t get sick like the kids did!

My final talk with a parent in St Louis was a parent in tears telling me that I changed how they see their child and they were so thankful. That is WHY I love speaking at homeschooling conventions and helping out families. The Lord has blessed our family with a unique tough life but he has also blessed us with a wonderful unique experience to work with families in need. Thank you Lord!

Reading at a resturant on the road

Our trip to the warm and balmy south!

Thursday March 15th we started out with a van packed full of sleepy kids and lots of boxes and suitcases! We had to get to South Carolina and set up my vendor’s table by 3pm. Then I was going to a blogger luncheon before the convention, Teach Them Diligently started. It was going to be tight but with high hopes we started off!

Ready for the trip!

As we traveled through the Appalachian mountains south into the Carolinas we had electric storms building in the west. Occasionally we would pass through a storm or the edge of a storm. Mostly we rode the edge of the weather front for hours through the mountains. What a breathtaking, wonderful sight!

Too many kid stops along the way so we were a bit late but I was set up and ready for the beginning of the convention!

Teach Them Diligently started Thursday night and went through Saturday night. It was long and tiring but well worth the energy and time.

Teach Them Diligently Booth and helpers

I was blessed to meet many families thinking about homeschooling. Some parents that were homeschooling but needed some support and encouragement. Others that just needed another special needs parent to sit and talk to. I am honored that the Lord brought those that needed help to me.

The little girls loving on the hampster

After the convention we made a trip to see a homeschooling/large/mito family! Rarely do we get to talk in person around the table with another family that truly understands what we are dealing with. The kids were thrilled and spent several hours playing. It was a time of refreshment for Chris and I, a blessing!

The final stop of the southern portion of our trip before we turned north was a stop in Atlanta. We called ahead and ordered a hotel suite with free breakfast. Our original plans were to stay in Atlanta for 2 days at that hotel then head north on Tuesday morning. Unfortunately the hotel was NOT a suite it was a room with only two beds (no pull out couch), not enough for our family. Then the breakfast was not free like we were told it was pay per item!

That afternoon we went to see our super specialist Dr K. She saw G and me. G was easier. She agreed with the current plan of care and recommended a few more tests then we need to get back to her when the ultrasounds, and testing are done. For me she was upset that my digestive system has almost completely shut down. She had lots of recommendations including doubling down on making the insurance company get me a pure elemental feeding formula, and oxygen. She has also recommended me to see several drs in Boston, immediately.

I am not sure how we are going to fit in the extra appointments in Boston, and how I am going to get there. I guess we are going to have to work that out when we get there. It’s a long trip but well worth it according to Dr K.

Our final stop in Atlanta like normal was at Joe’s Crab Shack. That has become our extra special dinner for the kids.

That  was the beginning of the trip, PART 1. Tomorrow I will talk more about the rest of our trip.

 

 

Mega appointment day this past Monday!

I got a phone call several weeks ago. The kids neurologist was very excited about some possibilities for our family. Her nurse and I put our heads together and came up with this past Monday as a good day to bring in ALL the kids for a total of 9 appointments!

Then I get a call on Saturday that the VA had a loaner power wheelchair for me! We made an appointment for later in the day on Monday and added it to the top of the heavy day.

Monday we get up there and go right through the center of rush hour into Pittsburgh. YIKES! We get in and start the appointments. We brought snacks, drinks, tech, and lots of coloring books to keep everyone busy.

Getting a breathing treatment while homeschooling

It turned out to be a tough neurology appointment.  The dr was concerned by Gr bad enough that she needs another MRI, swallow study, and multiple labs. It looks like she had a stroke that has effected her right side. *Reminder* Gr’s last 2 strokes have effected her left side. She is low tone and weak all over but startlingly weak on her right.

R was extremely low tone and weaker, more than last summer. The difference was so stark that she had no reflexes in several places, before she had low findable reflexes all over . Since R has a history of Chiari brain surgery this means she too must have an MRI.

Bella and M had a couple of issues that require blood tests to check on but in general they were okay.

G is continuing to worry his doctors with his yellow tone but the liver labs seem okay. He is going to get a full ultrasound of gallbladder and liver when we get back from the trip. He too has shown a steep decline in his neurological signs. We decided that he does not need a MRI. His previous MRIs showed a pattern of MS like lesions throughout his brain. There is nothing we can do about them and he is not having acute issues like Gr. It would be more traumatic for him to have an MRI then not too.

The genetics dr is putting us into a research testing. It’s simple. When the research is over or we get the results and can say more I will. This is a good thing we are happy about.

Finally we leave the hospital and rush over the VA hospital for the wheelchair therapist. I tested the chair and it was great. Then they said can we put it in your van. I said sure if you have the ramp. They said no I had to have the van modified and should have already been contacted by the VA about that. I was not. No one put the paperwork into the computer. Then they said they would deliver it. Until they found out that the ramp people had NOT put in the ramp last Friday like promised. The ramp contractor is going to cut 2/3 of the decking off my porch and I have to deal with the last 1/3 myself. So no loaner chair until my van gets a modification or the ramp gets put in.

We have been back and forth several times since Monday about the van and ramp. Trying to schedule the appointments and blood tests. All while prepping for the mini vacation/dr appointment/convention speaking jobs trip. I could use two of me or one of me that works.

This is going to be an intense trip. Then when we return we will go right into more intense appointments and tests for the kids. This is going to be a long spring.

Talitha koum! – Little girl, I say to you, get up!

Today’s Reading: Matthew 9:18-26, Mark 5:21-43, Luke 8:40:56

The daughter of Jairus, a administrator of a synagogue, comes to Jesus asking him to come and heal his child. Wouldn’t we all search out the person most likely to heal our child. This man had Jesus to ask!

The people believe the child is dead, but Jesus says, she is not. She is sleeping. Many people falsely attribute this miracle as a resurrection of the daughter of Jairus. It is NOT!

In all of history only ONE PERSON has been resurrected. All other miracles involving death/death like appearance (possible coma) with Jesus are resuscitations. Jairus’ daughter, and Lazarus are healed and awaken, but they continue to age and die like a normal human.

Jesus was resurrected and no longer ages. He has ascended to into Heaven. That is a resurrection.

Let us not forget the women with the bleeding problem that touches the hem of Jesus’ robe while he is going to Jarius’ house.

First in Jewish law a woman that is have her menstrual period is unclean. She would be removed from her family and society until she had stopped bleeding. She had been bleeding for 12 years! It would have been a constant pain of the disorder, and pain of society shunning. She would have nothing because she couldn’t work. No husband because she was not allowed in public. This was her last hope. She placed that hope in Jesus.

She believed that if she could but touch the hem of his robe she would be healed. She believed in who Jesus was.

Crowd Watches As Jesus Helps Person Lying On Ground

Bible Reading for Week 5

This week is healing week! Lots of healing but in different ways and many different people.  We are going to look at why some where healed, how some where healed, and how the people around them reacted. I hope you join along this week and we learn of many of the miracles of healing the Lord Jesus did here on earth!

March 5  Monday-  Talitha koum! – Little girl, I say to you, get up!

Read: Matthew 9:18-26 Mark 5:21-43 Luke 8:40:56

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March 6  Tuesday-  Pharisees question from whom Jesus gets his power

Read: Matthew 9:27-34

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March 7  Wednesday- The paralytic bought to Jesus on a mat 

Read: Matthew 9:1-8 Mark 2:1-12 Luke 5:17-26

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March 8 Thursday- Matthew (Levi)  joins with Jesus

Read: Matthew 9:9-13 Mark 2:13-17 Luke 5:33-39

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March 9 Friday- Jesus’ disciples don’t fast

Read: Matthew 9:14-17  Mark 2:18-22 Luke 5:33-39

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March 10 Saturday- Pool at Bethesda

Read: John 5:1-15

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March 11  Sunday- Day to worship at your church or home!

God bless!

Reading schedule Week 4

This week Jesus is in full preaching and ministering of the Galilee region. He is preaching at synaguoes, healing people, and driving our demons in the name of the Lord. This work by Jesus is ALL attributed to the Lord for Jesus has delibrately set aside his powers in order to be human. When you see the son you see the father!

Feb. 27   Monday- Jesus shows command over flesh and evil spirits

Read:Mark 1:21-28 Luke 4:31-37 John 4:46-54

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Feb. 28   Tuesday- “He took up our infirmities and carried our disease”

Read: Matthew 8:14-17 Mark 1:29-34 Luke 4:38-41

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Feb. 29  Wednesday- Preaching throughout Galilee

Read: Matthew 4:23-25 Mark 1:35-39 Luke 4:42-44 

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March 1 Thursday-

Read: Matthew 8:1-4 Mark 1:40-45 Luke 8:22-25

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March 2 Friday- All creation listens to Jesus and obeys.

Read: Matthew 4:12; 14:3  Mark 1:14 Luke 3:19, 20 John 3:24

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March 3 Saturday- Demons in Gerasenes

Read: Matthew 8:28-34 Mark 5:1-20 Luke 8:26-39

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March  4 Sunday- Day to worship at your church or home!

God bless!

The double edged sword week

You may have noticed that I completely fell down on the job and did not create a reading list for the week. I did post several days of reading on FB but not on the blog like I should have. I am sorry. I have the list ready for this week so it WILL be out later this evening! Just so you can understand here is what happened.

Our week started off with several kids not feeling great and the weather was really playing havoc with my arthritis. Chris is home all day Sunday and Monday then he drives to work, starting at 3am on Tuesday morning. As a family we focused great on homeschooling on Tuesday. I also had a slew of doctor calls and VA contractor calls on Tuesday and early Wednesday.

R in her princess dress

Wednesday evening we had a disaster. R our 7yr old with immunosuppression. She is also the little one that had the Chiari surgery and her neck and head are delicate. The kids were fighting (fun fighting) with Nerf swords and guns downstairs. Suddenly R started crying and was brought to me holding her eye.

The stories are mixed but the result is she was poked in her eye. At first I tried to get a ride to the pediatrician for us. I was not able to find a drive. Chris and I started talking about him coming home to help (even if that meant a 3 hour drive home and back again on the same day). Then R started to feel better.

After a call to the peds they assured me I could wait and see what happened. If she woke up still having problems then she needed to come in. If not she would be okay. So we waited.

When she woke up her eye was red, teary, and itchy. :( She had to go to the doctor.

Still was not able to find a person to drive us to the peds, or the local urgent care. Christ left work and drove home.

R did not scratch her eye! The bad news was she did have an eye infection that requires special eye ointment for a couple weeks.

Poor Chris had to go back to work again at 3 am that morning. Then home again this Sunday. Whoosh! Tons of driving for my hubby this week.

For the kids we have had lots of coughing, fevers, and tummy aches. It’s the time of the year when we just can’t seem to fully shake the illnesses. Sadly this is the when the kids or I settle into a illness/after/illness/after/illness cycle that stays until the late spring.

Praying  this year we are blessed with some relief. In 17 days the family is going on a vacation. We are traveling to Spartansburg, SC to the Teach Them Diligently convention where I am going to speak. Then we are stopping at our specialist in Atlanta, GA. The rest of the week will be a delightful journey from Atlanta up to St. Louis, Missouri where once again I will be speaking at a convention there, Greater St. Louis Home Educator’s EXPO.

Medical journey so far this year

Our medical journey so far this year is off to an interesting but VERY intense start.

We have been already been to 7 specialist appointments in a month in a half. All in Pittsburgh OUCH, that is a long ride. Next week is going to be a LARGE important neurologist/genetics appointment with labs and an ultrasound for ALL 5 kids. Those days are tough but we have found the hospital cafeteria has good food. In the end we will be exhausted but I hope have some answers and perhaps a new treatment on the way.

Update for the power wheelchair. I have had an in home evaluation from the contractor for the power wheelchair and cruised around in the one he ordered. Sadly that chair most likely won’t come in until May. I was told I would have a ramp installed immediately. The person that was supposed to do that has failed to show up for the home appointment. Now neither he nor his boss is taking my phone calls. grrr I am praying hard I can get a loaner in time for the end of March conferences I will be speaking at.

Gr’s power chair is STILL on order and paperwork delay.
R’s wheelchair has not been ordered for some strange reason?? Hoping Monday will get that worked out.

M will be getting Gr’s old wheelchair. Her legs are hurting more and more even with pain medication to help them. She is also becoming winded and tired after just a small amount of walking. She is excited to have her own wheelchair to, “help her leggies.”

This past Monday we talked with the VA and had a clinic appointment. They doctor was extremely helpful. The VA is helping me to start up several specialists that I had lost through the intense last year and missing several appointments. The dr agreed that I am flaring with my autoimmune disease and need an urgent appointment with Rheumatology. Cardiology is being brought on board to watch the hole in my heart and not touch me unless there is no other way. I am too delicate. I am getting a GI and dietitian that will follow me more closely then I have been so far. I also have neurology to see because a seizure or 2 a week is too much and she wants me to see if my meds need changed. <<sigh>>

It was a huge day. In the end we felt there was a lot accomplished. Because while we were going in and out of appointments we were fielding phone calls. One is for the big appointment next Monday. The other….drum beat….. the HUGE genomics test for mitochondrial disease is being pushed through insurance for one of the kids! This test is over $10,000 and the doctor wrote in big letters that the test would not happen if the family had to pay out of pocket. Bless you Dr G.

That leaves us up to date with the comings and goings of major issues. The little stuff is the M, R, GR are all in a nonstop rolling sinus/asthma breathing problem. Some days with fever other days without. G is having a significant energy problem. We have pushed him to the top of the list for his lab tests and ultrasound immediately. There is something happening and we need to find out what the problem is immediately.

Hanging out together on my hospital bed.

On a strictly FUN FAMILY update: We are taking a working vacation! I am speaking at two homeschooling conferences the first is Teach Them Diligently in Spartansburg, SC. We are then going to stop in our genetics dr in Atlanta, GA on Monday because I and G are having sliding health problems. Hoping for some ideas to stop this slide and stabilize. Finally we are going to travel upward towards St Louis where I am speaking in the Greater St Louis Area Home Educator’s EXPO. I will be a featured speaker there!

When I realize that this time last year I was eating, walking with a cane, and driving my kids to a great co-op. This year I cannot eat by mouth. I cannot drive. I cannot even walk down the street on a nature walk with my children. Chris and I have realized that we have to savor every moment, every day. In order to do that we are moving to make memories in every way we can. A quick vacation here. Hand print art. Creating a quilt together. Reading our Bible together snuggled on my hospital bed. I am thankful for today.

Praise the Lord for every breathe!

 

 

Jesus and John Baptizing at the Jordan River

Reading Today: John 3:22-4:2

I have read this passage many times but my eyes did not see. I have read through John by myself and with speed read through the Bible studies but not really heard what was said. Please don’t misunderstand, I like many of the read through the Bible studies. It helps us to make reading the Bible a regular part of our day and that is great. The one problem is many do not allow for study of the Bible.

That is the reason Chris and I have taken such a relaxed and WHOLE Gospel view of reading through this portion of the Bible. We would very much like you to have a more interrelated vision of the Gospels.

Jordan River

Like I said before I have read this portion many times but not stopped and thought it through with study. I didn’t realize that at one point John the Baptist and Jesus (through his disciples) John 4:1,2 were baptizing out of the river Jordan across from each other. The Jordan is not a huge river. (see the picture)

This most likely helped egg on the grumbling in John’s followers. It also highlights how John was willing to be humble and step aside for Jesus. John kept his eyes to his mission. Make a path for the one who came before that will also follow, Jesus!

Can you imagine being a Christian rock star. A Rick Warren of the ancient world. Able to ask many followers to do or go get whatever you wanted. Along comes Jesus and you set ALL that fame and following at his feet with a happy heart.

A great reminder that the fame, things, and renown of this earth will fade and fall to dust. Only the treasures we store in Heaven will remain. Obeying God in all things big and small. Reaching others for the Kingdom of Heaven. Standing firm to the Truth no matter the consequences.

I saw a picture with the spray painted slogan on a rough, beaten down old house. Tell the truth even if your voices shakes when you do it

God bless my friends!

 

 

faith

Nicodemus seeks out Jesus

Today’s Reading: John 3:1-21

The meeting of Jesus and Nicodemus.

Who was Nicodemus? He was a high ranking official, a Pharisees, a member of the ruling body the Sanhedrin. He was a teacher and leader in his own right and yet HE comes to Jesus, not to condemn but to learn.

Nicodemus is thinking in a very real world manner. Jesus told him the Truth of the Gospel John 3:16 “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

Hallelujah!

Nicodemus was teachable. He desired to know what Jesus was sent to teach. I don’t think he understood that Jesus was clearly telling him/us that the Lord has deemed the world evil and the verdict is… “This is the verdict: Light has come into the world,” Even though we have sinned and fallen short from the time of Adam onward the Lord has come to us. The Lord has brought peace and a path in which the sinner can still come to Him.

How forgiving and wonderful a God we serve!

Don’t forget our memory verse is:

1 Corinthians 13:4-8 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.  Love never fails.

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