Friday, July 12, 2013

Exciting Times in the Shoe

After much neglect, I am here again to post an update!  No, we did not fall off the face of the earth!  Life in the shoe has been busy, as usual, or maybe more than usual.

Much change has occurred in the shoe since I last posted.  I will not go into all of that in this post, since it would take too long.
Our third child, third daughter, Bethany graduated from homeschool highschool May 2013!  She graduated with an honors in fine arts. 
Many of you may not be familiar with homeschool graduation, or live in an area where ceremonies are not available.  We have an organization called C.H.A.L.C. that provides an opportunity for senior homeschoolers to have activities, such as a formal and a banquet, as well as socials.  They have quite a large graduation ceremony at the end of the school year.  It is quite impressive.
Bethany was on the worship band during the ceremony.  She played bass guitar and sang.  She also participated in the planning of the formal, and the after party for the formal.  It was all very nice, but a LOT of work!
Bethany is working at a local grocerry store, and plans to work and save money for her future.  She feels the Lord is calling her to someday be a wife and mother.  She continues to help here at home with the family and is learning more about running a household and caring for children.  (and she continues to spoil her baby sister, Trinity!)

Other big news!  Joshua no longer needs to wear the patch on his eye!  After 8 years of patching therapy, he is free!  This was very difficult for him, at first.  He was fearful that his eye would become weak again if he did not wear his patch.  It took a lot of reassurance that first week that it was ok to not wear his patch. 

His eye is not all better now, far from it.  He will continue to wear his medically necessary contact lens, and use drops for glaucoma.  But the vision in his right eye is no longer making progress, it has been 20/50 for quite some time.  We did a trial of 3 months increasing the patch to four hours per day, with no improvement.  So it was time to accept that Josh's vision in his affected eye will not be more than 20/50.  Unless, of course, the Lord performs a miracle;) 
I am thankful, yet a bit disappointed at the same time.  I had hoped for the best vision ever reported in a child with PHPV, one for the record books.  But that didnt happen.  But Josh's vision is quite remarkable for someone with his history.  It is better than many children with his diagnosis and complications.  I have the peace knowing we did everything in our power to give him the best chance of vision.  I do not have any regrets.  Praise God!  Josh has usable vision!

Tuesday, April 24, 2012

A Short Update

I am not sure if anyone ever reads my rambling thoughts.  My intention was never to be one of the "popular" bloggers.  My desire was, and still is, to put my thoughts into writing when I am able.  Life gets busy with eight children still living under my roof.  Some days I feel as though I have no thoughts worth putting into writing.

We have had a lot going on.  More medical things.  Nothing as dramatic/traumatic as last summer, praise God.  I am happy with boring and humdrum:)

Joshua, now 7yo, had his 7th surgery on March 27th.  This was another eye muscle surgery, to straighten and fix the v-pattern movement of his right eye.  He is fully recovered, and his eye looks good. But this surgery was longer than his other muscle surgeries, resulting in a lot more post-op pain.  Pain so severe that Tylenol was not making a dent.  Many children cry and scream when in pain.  Josh has always shut down when in pain.  I knew it needed action when he no longer answered my yes and no questions.  Thankfully, he is back to his former self, complaining about daily patching time, and trying to sneak out the door before his school work is completed.

Christopher has had some odd symptoms going on.  Some of which have caused us, and the doctor, enough concern to warrant a trip to the pediatric hematologist.  He has an appointment in mid-May.  One of the symptoms is spontaneous gum bleeding.  Since Ginko can cause gum bleeding we have discontinued that for now.  The episodes have not stopped, but we will not restart the herb until we see the specialist. 
Topher has also been having troubles with his ears again.  He had the tubes that were supposed to last up to 5yrs.  His came out in less than 2yrs.  The audiologist at the Cleft Palate Clinic felt he has developed sensorineuro hearing loss, and recommended hearing aids.  The PA at the ENT office, said one ear already has fluid behind the drum, and the other has a sizable hole, too large to place another tube.  We need to address the fluid before we can get aids.  She said we can go in and put a tube in one ear, and go back later for the other.  We decided to wait, at this point, until after he sees the hematologist.  Hopefully, by then, either his ears will both be clear, or they will both be ready for tubes:(  (Even though I do not want to do tubes again, I want him to be able to hear.)

We are winding down our current school year.  We are in crunch time, where my highschoolers need to knuckle down and get their term papers finished, and tie up any loose ends.  Then the portfolios need put together for our required trip to the evaluator.  Then the kids can sigh a huge sigh of relief, while I gear up for the next school year. 

Tuesday, February 14, 2012

Sweet Valentine's Expression of Love

Today is Valentine's Day.  My husband did not give me roses, or one of those fancy, heart-shaped boxes of chocolates.  He didn't take me out for a romantic, candlelit dinner, or buy me jewelry.

Some women would be looking at me with pity, or looking at my husband with disgust.  They would think he has not displayed his love to me, on this national day of love and romance.  Oh, but they are so far from the truth!!
Over the weekend, when many couples were beginning to celebrate the holiday of romance, our family was hit with a very bad stomach bug.  The two youngest children got it first, then I got it, then three more of the children.  Usually, when the children are sick, I am the one to care for them.  But this bug was so severe, I could not, in fact, I could not take care of myself.
Gene came home from work to a household of sickness, and no supper.  Many husbands would have complained, or left for the evening.  Not Gene.  He dumped buckets of vomit, and washed soiled sheets.  He brought cold drinks, and tylenol.  He refreshed cold cloths for feverish faces.  He mopped up accidents from floors, and changed dirty diapers.  He made trips to the store to bring home drinks and soup.  During this time, the two oldest girls were both at winter camp.  Some fathers would have gone after them to help with the sick family, but Gene did not.  He wanted them to enjoy their weekend, and hopefully avoid this plague.

During his acts of love and sacrifice, I never heard him complain, or say that we better not make him sick with this bug.  Sadly, Sunday night, he did get the stomach bug, too.  Just as I was beginning to feel better, and could take care of him:) 

I would have enjoyed flowers, and I never turn down chocolates.  But the actions of my husband showed more love than cheap trinkets and flowers that fade, and flavorful treats that get added to the waist line.  So, feel sorry for me if you like, I know what true love is;)

Wednesday, February 8, 2012

Valentine's Day Party

We had our homeschool group's Valentine's Day Party today.  My kids look forward to this every year.  They enjoy filling out the corny little cards as much as they enjoy recieving them.
This year, we all took a pink desserts to share.  There were many tastey homemade treats, lots of red food coloring:)
Most of the girls wore dressy dresses, or prom gowns. 

Today also happens to be Topher's 5th birthday!  Other than not wanting to eat lunch, and not being allowed to take off, he had a pretty good day.  He even made a new friend!  For some reason he seems to gravitate toward people who are much taller than he is.  He pulled Will along by his coat for a while, then Will decided to carry Topher on his back, or maybe that was Topher's decision:) 

Either way, it made Topher's day!  And it made my day!  I am very impressed by this 14yo young man!  He seemed unconcerned about impressing anyone, not worried about being self-important, as many teens can be.  What a blessing!

Sunday, February 5, 2012

Can't Buy Memories Like This (Sundry Happenings)

That is one of Allura's favorite expressions.  She usually says it in a sarcastic way when really odd things are going on around here. 

Bethany, who will be 17yo on Tuesday, was on the worship team at church this morning.  So her dad took her over early for practice.  Bethany shares a room with 2yo Trinity.  It is an interesting, and often funny arrangement, which they both seem to enjoy.  I went in to get Trinity out of her crib this morning, and she was sitting there with Bethany's wedge high heel shoes on her feet.  Bethany must have considered wearing them today, and flung them on the floor close to Trinity's crib.  When I picked Trinity, she managed to keep them on her feet.  Too bad she couldn't walk in them.

During worship, Bethany is very good at looking at the congregation, and making  eye contact, seeming very comfortable.  When she looked over toward her dad and I today, I quickly made bunny ears behind Gene's head.  She laughingly told me later she is ashamed to have parents like us!  Bwahaha!  Just a little payback for the many silly and embarrassing things she has done throughout the years.  Parenting teens is sooo much fun!

Joshua, who also has a birthday on Tuesday, and will be 7yo, was snuggling with me earlier in the week.  We were talking about his upcoming birthday, and he made a comment about himself having Down syndrome.  When I told him he doesn't have Ds, his brother Topher does, he was confused.  He thought we all have it!  I realized Josh doesn't see his brother's differences, he sees him as being just like the rest of us.  So precious to my heart!

Aaron had a episode of vomitting on Friday evening.  It started at supper-time, and did not relent.  We took him into the local hospital, where we took him last summer when he was sick.  It is amazing how quickly the hospital can find your child a bed when he has a history of acute renal failure and cardiac arrest! 
Shortly after the triage nurse saw him, they took us back to a hall bed, he had barely laid down when they began putting the B/P cuff on him, and the leads for the telemetry monitor.  Sinus Rhythm has to be about one of the greatest sights to behold!  They started an IV right away,  gave him something to stop the vomitting, and ordered lab work.
They did swallow studies, which showed narrowing of his esophagus, which we already knew, and have another dilation scheduled.  I think his esophagus continued to have the sensation of something being lodged after he vomitted out the offending food chunk. 
They considered admitting him, but said if he could keep some liquids down, he could go home.  Aaron piped up that he drank the "chalky stuff and kept that down, did that count?"  It did, and they sent us out the door at 1:30am. 
He seems perfectly fine again.

Sunday, December 4, 2011

Another Pediatric Ophthalmologist Appointment

Josh saw Dr. M on Friday.  His glaucoma and vision is stable, no changes.  Praise God!

But his right eye continues to do an upsweep when he looks to the left.  Dr. M started to look through Josh's chart to review his previous eye muscle surgeries, but realized that he only had chart II, not chart I.  Josh's chart is so thick that it had to be divided into two volumes!  Dr. M said he needed to go to the archives to get the other volume, and would take some time to review it. 
We had a different ped ophth for a very short time, a couple years ago, who was closer to where we live, but he was not experienced with children with PHPV, so we went back to Dr. M.  Unfortunately, we allowed this other doctor to do an eye muscle surgery on Josh.  Dr. M had to fix the damage to Josh's eye, as well as correct the problem the other doctor was supposed to have fixed. 
Depending on what this other doctor did, will affect if Josh's current eye muscle problem can be fixed. 

Waiting is not an easy thing for me.  But I am now waiting for Dr. M to call me to tell me if Josh's eye muscle problem is fixable, or if he will just have to learn to live with it.  It is dificult for me to know how to pray in this instance.  I want Josh to have optimal vision, and that would mean being able to fix this eye muscle issue.  But I dread more surgery, I dread more anesthesia, I dread seeing my little guy once again suffer post-op pain. 

Monday, November 7, 2011

Homeschooling Update

Life has been busy here in the shoe.  We have been plugging away with our homeschooling.  My days are full with homeschooling seven children!
Jesse, my second grader, is doing well with reading.  He eagerly brings books to read to me.  Math is another story.  It is more work for him.  He would rather do the things that come easy, and skip those things that take time and effort.  Pretty typical for all of us!
Josh, my first grader, who has the eye problems, is doing well, too.  He is my only south paw, and that has been interesting.  He is reading well, and sometimes thinks he is in a competition with Jesse.  Some days he cries because Jesse is ahead of him. 
Seth is my fourth grader.  He is doing well, is really beginning to bloom as a student.  He likes to work outside with his daddy on the weekends, and enjoys seeing how things work.  And he LOVES dinosaurs!

Aaron is doing well with his school work, after his big ordeal last summer.  He still creates ways to get out of work, so I would say he is back to his former self:) 

Sarah is a freshman this year.  She is enjoying being a bit more independent with her work.  She has a heart for learning and desires to be a speech and language pathologist someday.  She is in the process of starting her own ministry.  She is selling handknitted hats and other items, to raise money for more yarn.  With the yarn she buys, she is knitting hats to send to an orphanage in eastern Europe.  She hopes to someday go and work with the children there, but for now, she sends them her love in the form of hats.
(The items she sells are mostly made of handspun wool, which is not good for donating to places where handwashing would not be an option.  The would quickly end up with unusable hats.  Thus, the selling of items to buy yarn.)

Bethany is a junior this year.  She is one of my artsy ones and is working toward an arts honor diploma.  She is getting quite good with her drawing.  She also enjoys knitting, but is not driven the way her sister is.  Bethany is learning to drive, which has proved to be quite interesting for her dad!

Christopher  is my preschooler.  We are doing a K4 program that is especially for children with T21.  We just started this level and are working on getting a feel for the program, and getting organized.  Currently, he is learning more sight words, and attempting to put them together to form very simple sentences.  He is learning to match the names of himself and family members to their pictures.  He enjoys this.  We then use the names with the sight words in sentences.  I have noticed this helps Christopher attempt to say words he otherwise would not.  He is able to say his own name now!  Well, the nickname we call him:  Topher.  I love the joy he has when he has accomplished something new! 
In math, Christopher is working with learning his colors.  We are doing all sorts of "red" things now.  Red hearts, red ladybugs, red playdough,  finding red clothing in story books.  He is counting to 5 and stacking blocks, and doing sequencing with the blocks.
His muscle tone in his hands is quite low, so we are squeezing putty balls, and poking playdough to help strengthen and give better control.  Holding crayons and pencils can be a challenge to little hands that have low muscle tone. 
Trinity is my little toddler girl.  She is busy playing and developing her speech and other skills.   When we work with Topher with his speech, she is by his side, saying all the words we are trying to get him to say.  They laugh together and fight together.  She has passed him in speech, which we knew would happen.  In many ways, they are like having twins, they are so close in development right now.  I know this will change, as Trinity speeds into the next stage, and Christopher enjoys taking his time and savors the moments.