It is my hope that through this blog I can share experiences and challenges from day to day life.

Wednesday, September 28, 2011


It seems amazing how some things can seem so short and yet so long all at the same time.  Today marks the 18th day of school for us.  It has gone by so fast and yet seems like it has been a long time.  It also marks the end of our current unit on ears and listening in our Attentiveness Study.

Today we reviewed all that we have covered.  It is interesting what sticks to memory and what seems vague, especially when they knew it a few weeks ago; greater evidence that if yo do not use it (or talk about it), you loose it.  Oh but the fun they had while discussing everything.  During the last few weeks they have covered Science, history, the Arts and memorized several verses from the Bible.

Here is a picture of our Historical and Present Day wall.  During the course of our studies they meet many characters and put them on the timeline of history, showing them where in history these people lived and how it relates to them.  Yes even they are now on the timeline.

So far we have discussed creation, Adam & Eve, Cain & Able, Samuel, King David, Christ, Mary & Martha, Bach, Handel, Mozart, Alexander Graham Bell, William Booth, Helen Keller and several others.

They have learned about their ears and how they work; they love that there is a drum and hammer inside and can tell why.  We have discussed sound and music, learning about an Orchestra and and the main parts; Brass, Woodwinds, Strings and Percussion.  We have done experiments to see sound waves and making their own phones with string and cups--fun day.  They have read MANY stories and seen movies that talk about parts of hearing and sound.

Their real fun was visiting a music school where they got to play the flute, soprano sax, piano and the violin.  They learned some Latin and how a conductor and musicians know when to play soft or loud and their favorite--fortissimo. This was a very exciting day for them and they especially like trying the violin.  The instructor was impressed at how well the played each instrument especially as it was their first time.  And their enthusiasm was amazing.

We were blessed a few days later when friends gifted the kids with a violin of their own.  To me this was an amazing gift.  Both kids are eager to learn and want to play.  So now I am looking for beginner violin and piano books to teach them and someday will have to find them a teacher.  Good thing we know a good music school close by.  :)   

What an amazing first few weeks.  There is much that I have not mentioned; but many rousing discussions that took place at various times throughout their day.  Next we will discuss our eyes and how they contribute to being attentive....

Sunday, September 18, 2011

Josh's Big Surgery part 3 of 3

September 11, 2011
Sunday at 10:30pm
It has been challenging to get Josh situated and keep him comfortable.  He is often bored or just not comfortable.  Although he started sleeping in his room, last night he moved to the living room to sleep in daddy’s chair.  He goes from his wheelchair to the big chair to his bed; depending on his mood. 

In all he is doing well very in handling the pain and discomfort.

September 15, 2011

Josh continues to improve; a blessing to be sure.  He has done much better now that he is home.  He has had a few moments when he starts crying because he is DONE with the whole thing.  HE wants the casts off or they are uncomfortable.  We talk thru it with him and pray with him and he moves on.  He really missed his sister not being around.  He even said, “I miss Shelby.  It is boring when she is not here.”  And she told grandma on Monday that she thought it was time to go home.  So Tuesday evening she came home.  We were all glad to see her again.  Of course now, they fight and argue all the time—back to normal I guess.

Jody is doing much better with his knee.  He started Physical Therapy this week and it has taken a toll on him.  He does well in PT and feels good after, however when evening comes he is wiped and out for the next day.  We are thankful for his sleep meds to help him get some sleep.  He is hopeful that he can go back to work next month.

With all the Doctors’ visits, Therapy sessions and trying to stay caught up in house work, not to mention the multiple naps Josh takes due to pain meds, school had a few more off days than expected.  More reasons we are glad we opted for Homeschool.  Can’t imagine trying to work “regular” school schedule into the busy, crazy, upside down days we have had. 

People often ask how I am doing and truthfully it depends on the day.  For the most part I am fine.  Tired; sometimes exhausted; found some back muscles I have not used in a while—comes from lifting an extra 50 lbs. several times a day.  Sleep comes but more like a new mother, as I must keep an ear trained on Josh in the event he needs help at night.  As well, Shelby has been fighting the sleep thing the past few nights and therefore I end up going to bed later than I would like.  Again many more reasons to be thankful for homeschool.  The learning will happen, but more slowly this month.

September 18, 2011
Great day today.  We were all in church today.  It has been awhile.  Blessings, still come and healing is close behind.  We give thanks for all the prayers that have come our way and look forward to what will come out of all the challenges of the past few months.

Friday, September 16, 2011

Josh's Big Surgery 2011 -- Part 2 of 3

September 8, 2011
Thursday at 5:20am
We both slept well tonight. Josh even slept thru his cares at 4:30am. He was sleeping so well he was able to skip his meds at 4am thus waiting till 6am to get a larger dose of meds which will be good when he start Physical Therapy today. Moving him is painful and the extra boost will be good.
Thursday at 6:24am
Today is movement day. We changed is clothes and later will change his bed. We also turned him kind of on his left side. It’s a little uncomfortable for him as he has been totally on his back all day yesterday. But he needs to move and be on his sides. He wants to go on his tummy which may be more than he can handle right now. PT will help us figure all this out, but it is defiantly a 2 person task.  It wipes him out but he is now sleeping again. Of course Codeine and Valium can do that.
Thursday at 6:55am
Song running thru my head:
This is the day that the Lord has made; I will rejoice and be glad in it.
This is the day that the Lord has made; I will rejoice and be glad in it.
Rejoice! In the Lord.  Rejoice! In the Lord. 
Thursday at 10:22am
Good day today. PT came in to show us how to get him to and from bed to wheelchair. He did a real good breathing and with pain was able to assist moving himself to and from bed. Then he wheeled himself in wheelchair down the hall a bit. Watch out Josh is driving!
Thursday at 1:30pm
Josh fed himself lunch and ate most of it. He is excited to go down to the playroom and find some games. His IV has been removed and will stay that way as long as he is drinking plenty of fluids. He has thoroughly impressed the PT team at how well he did without complaint or crying.
Thursday at 3:10pm
Josh went down to playroom. But there were so many kids and the video games were not working so he chose a game to bring back to his room. He drove himself ALL the way down and part way back before getting tired. I suggested he sleep a bit and then play game. He said he was not tired. We got him into bed and no sooner put the pillow behind him and he was out. 2 1/2 hrs later and he is still asleep.
Thursday at 5:45pm
He just woke up and playing his video game. 
Thursday at 6pm
 SOOOO engrossed in his game he will not talk to me. I have to block the TV to tell him dinner is here. He does not want it.
Thursday at 6:30pm
We have been (As usual) blessed by the staff here at LLUMC. The only down fall I see is that the patients get better food than what is served in the cafeteria. Why..you ask? Because the patients actually get MEAT. In the cafeteria they only offer Veggie everything. A veggie dog is NOT a hot dog by any means. And what is sadder is the short order cook does not even know what the veggie burger tastes like. Reason: 7th Day Adventist whom evidently don't eat meat.
Thursday at 7:45pm
He is doing great! He played for 2 hrs. Nibbled part of a cheese sandwich then feel asleep again.

September 9, 2011
Friday at 5:43am
Josh slept thru the night even able to wake for his 1am meds. At 4:30am his fever spiked to 102. It has been sitting at 99.5* & 100.5*. Please pray that his body will fight whatever it is fighting and get the temp down. This would be the only thing to keep him longer--and he wants to go home.
Friday at 6:45am
My devotion this morning:  
Isaiah 2:15-17 "He will break down every high tower and every fortified wall.”
Friday at 7:15am
Josh's temp is back at 99*. And today he actually wiggled his toes on both feet. Something he had not been able to do. One of the Dr's assistants came in. He said because of the surgery he will run a bit of a fever, and if meds are keeping it in check then he can go home. As well, he said 99* is not a big concern, if it were to stay at 102* it might be different. We will see what the Dr says when he comes in.
Friday at 9:30am
One question they always ask Josh is to wiggle his toes. He has not usually been able to do this before surgery and so the last 2 days he said no. This morning he wiggled his toes on both feet. Slight but wiggle none the less. 

Josh had some breakfast and wanted a bath.  He was in a lot of pain and so they gave him some Morphine.  We gave him a sponge bathe which he really liked.  Get the yuckies off him.  But then he was so tired he wanted to rest.
 Friday at 10:40am
Dr came in and says Josh can go home if he wants.  At first Josh said he wanted to go home, but then before he fell asleep he told me he changed his mind and he wants to stay.  I told him to sleep and we would discuss it after he woke up.  Experience has taught me that if he says he wants to stay it is better to stay.  So we will see.

Dr is not concerned with the spikes in temperature as it is part of his bodies healing process. As we are able to control the temp with Tylenol and Ice packs so there is no problem.
Friday at 12:00pm
Josh is sleeping.  We got his med schedule off track and he had to have some morphine due to some extreme pain.  So He is sleeping now.
Friday at 3:00pm
Josh woke and we discussed going home or staying another night.  He said he hurt and wanted to stay another night.  So I told him; “Josh, you will be hurting for a while.  So would you rather hurt here in the hospital or hurt at home with daddy?”  He said he would rather hurt at home.  So we will make plans to go home.
 Friday at 4:30pm
We are in the car and on our way home.  It is a journey as we have to navigate his seating to make sure he is comfortable.  We had to stop once for him to go to the bathroom and then again to readjust his seat.
Friday at 6:30pm
                HOME AT LAST!

Thursday, September 15, 2011

Josh's Big Surgery 2011 -- Part 1

Josh’s Big Surgery

September 5, 2011
Monday at 4:40pm
Laundry washed, folded AND put away (a feat not easily accomplished the last few weeks.) Floors swept and mopped. Suitcase mostly packed and dinner in the oven. I think I am ready for the week at Loma Linda....We will be staying up late tonight so Josh can eat till mid-night and hopefully sleep in some. Then all the pop-cycles he wants for Breakfast in the AM and off the LL @ 11am.

I will be staying in a chair next to his bed. He has never been away from home except for grandma's. He has been really anxious all the more reason to be near him. I may actually get some reading done.

September 6, 2011
Tuesday at 9:20am
Well, we are just about ready. Josh has been playing video games this AM.  He settled for water for breakfast.   He is doing well. Thank you all for your prayers. I will update as I can today.

Hard to tell from the picture on the left, but this is Josh being his normal, goofy self.  As he was waiting in Pre-OP he asked the nurse for some gloves and a mask.  They then also brought a hat.  he loves to dress up in the stuff while waiting. 

September 7, 2011
Wednesday at 12:37am
Well, surgery was scheduled for 3pm. Dr. was running a bit late. Then trauma patient came in and we got bumped. Our Dr. had to help with the trauma as it was a child in severe condition. Need-less-to-say, Josh did not go into surgery until 11:30pm. 24 hrs no food and 12 hrs no liquid. He was a trooper, impressed the nurses by not complaining.

Wednesday at 1:26am
It was a VERY long day but I am well. I know and have seen many parents get heated. But there was nothing anyone could do and causing a fuss isn't me and would do no one good. So you (I) breathe a lot and look at the clock and pray things move on with positive info soon.... Dr just said they are closing up and all was fine.
Wednesday at 2:14am
Waiting to be called back to see Josh. He is in recovery asleep. Sooo tired, I want to see him and I want to sleep.
‎ Wednesday at 7:46am
3 hrs sleep---maybe. Josh is doing ok. Pain when he moves. He had some morphine about an hour ago.  He is eating ice chips and drinking water.  REALLY wants to eat but that is not for another hour.
Wednesday at 8:56am
So Josh has casts on both legs from the thigh
down to his feet. Then there is bar at his
ankles that spread his feet apart about a
foot and 1/2 or so. This is so that the
lengthening they did on his abductors (the
 inner thigh muscle) heals giving him more
stretch and range of motion.

 Josh's ankles are 16" apart. To give perspective—
His legs are 17" from groin to ankle. So figure out
how long you legs are and spread them out that far...

Wednesday at 5:24pm
They have removed his catheter. He has been sleeping off and on today, slowly getting his pain under control. Physical Therapy will come tomorrow to help determine what he needs at home. He may go home tomorrow but I am thinking more like Friday, which I would prefer for the pain.
Wednesday at 5:27pm  
Our biggest concern after pain management is getting situated with respite to be able to assist with him at home a few times a week.
Wednesday at 10:38pm
He seems to be doing better, more talkative tonight. His color back and he wants to play video games.

Will continue Tomorrow...

Sunday, September 4, 2011

Surgery preparations

Well, our young man will have surgery this Tuesday.  It is a bit overwhelming to say the least.  Each of us is hit in different ways depending on the moment and what we are thinking.

For Josh, as he is older now (7) he hears more and understands more.  So when we are talking to Doctors and nurses even though we think he is not listening he is tuned into the conversation.  He has had moments where he completely melts when trying to understand what is to come.  He has undergone so many procedures that surgery in and of itself is no big deal to him.  He even goes to the OR with the nurses laughing and making jokes. However this time around, he is more anxious than in the past.  He has been a lot more clingy in constant need of reassurance.  So there has been more kisses and hugs and "I love you's."  He became really upset at the thought of not being able to eat breakfast the day of surgery.  We have softened the reality by telling him he can stay up till midnight on Monday and eat and party the whole time.  He is excited about staying late.

For my husband, it is very hard.  Being that he just had knee surgery, he is not able to go on surgery day to be with our son.  It would be too physically demanding, not to mention emotional.  He has been to all Josh's procedures; so not going to this one which is a more serious procedure is very hard to process.  I think he is experiencing a very real picture of wanting to do so much and not being able to control or do anything about any of it.  On top of which he is dealing with his own personal healing process which is draining on him to say the least, another area in which he feels helpless and not in control.  It has been daunting at the very least.

For our daughter (4) she does not  really know what is going on.  She know Josh will have surgery and will have casts on his legs, but beyond that she knows nothing else.  Yet she feels things and knows something is happening and the tension or uneasiness has made her a little more prone to tantrums and acting out.

For me, it is a day to day letting go and moving forward.  I try hard to make sure all care cared for and comfortable as can be.  As long as I am busy or doing... I am fine.  When I stop and start thinking is when everything becomes very overwhelming and the emotions pour.

In it all we all have found great relief in knowing that God IS in control.  HE does take us through each day.  Josh was listening to a Christian song and came to me to say it made him sad because it reminds him that he knows Jesus.  So I told him to think of how he would feel going into surgery without Jesus.  He said he would be REALLY scared, and is thankful that he does know Jesus.  My husband and I are very grateful that both our kids know Jesus and know that HE is the source to go to for comfort and rest.

So it is hard right now in many ways,  ways even I have not mentioned.  But God is faithful in the midst of it all.  Josh has a new memory verse which he really likes and has been reading it every night, something we can all find strength in:  "Have I not commanded you be strong and courageous? For the Lord you God is with you wherever you may go."  Joshua 1:9   A good promise for all times.