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!

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. 

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;)

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!

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.

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. 

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.

Canning Day

My oldest daughter, Crystal, came over on Tuesday.  We canned 22 quarts of applesauce.  Crystal made cranberry sauce, too.  That is the pretty red jars.
So much fun!
We plan to make some applebutter and more sauce next week.

Plastic Surgeon Appointment

Aaron saw the plastic surgeon at the wound center yesterday.  He said Aaron has a keloid at his wound.  This basically scar tissue that has gone crazy. 
The plan is to have Aaron apply moiturizer, such as cocoa butter or olive oil, to soften and hopefully flatten the area a bit.  He is also to stay off the area as much as possible.  If it continues to bother him, there is the possibility of removing some of the excess scar tissue.  Otherwise, they prefer to leave it alone.

I am having Aaron massage coconut oil on the area a couple times a day.  Coconut oil is a good moisturizer and very healthy for the skin.  Smells good, too:)

Oysters on a Half Shell

I was at the grocery store on Tuesday, when my cell phone rang.  It was Allura, my 19yo daughter.  She asked me if I could come get her at work.  When I asked her why, she said she had sent me a text, hadn't I read it?  No, I don't always feel my cell phone vibrate to alert me of text messages.

Allura was having an allergic reaction.  She had eaten a sample cup of oyster soup at work.  Allura is very allergic to shell fish, but she said she did not know oysters are shell fish!  Currently, she is working in the food industry, so I would have thought she would know that oysters are shell fish!  She has had reactions to crab, and to glucosamine and chondroitin, which comes from shell fish, in the past.  When she consumes shell fish, her throat gets itchy, she gets short of breath, and her heart races and skips beats.

She was in her car, and wanted me to come get her.  I tried to convince her to go back into the store and have one of her co-workers take her to the emergency room.  She told me she would be fine, her friend, Miles, was coming to get her, he was only 10 minutes away.  Later, she admitted she was too weak to walk, that is why she didn't go back in.  If Miles was coming to get her, did she still want me to come?  "yes, I need you to come, Mom".  That scared me, my independent daughter!

The grocery store was about 45 minutes drive from Allura's place of work.  I called her a couple times to see how she was.  I instructed her to call me when Miles got there, and that he was to take her around the corner to the Urgent Care Center. 
After about another 10 minutes and no return phone call, I called her again.  This time, she was not answering the phone.  I was in a panic.  I envisioned her dying in her car, with no one there to help her!  So, I called 911 and had them dispatch and ambulance.  I continued to try to get her on her cell phone.  After a few more attempts, she answered and said Miles was there, and was taking her to Urgent Care.  I called 911 and had them cancel the ambulance.  I heard later they ambulance had been circling the parkinglot looking for her car.

I was still a good 10-15 minutes away from Urgent Care.  When I pulled into the parkinglot, Miles, whom I had never met, was nervously pacing the waitingroom, watching for us.  He had such a look of relief when he saw the big blue van pull in.  Allura agreed with me later, that he had been watching for us, and he admitted to being relieved when I showed up:)
The doctor had already given Allura a shot of prednisone in her butt, and a shot of benadryl in her upper arm.  She was in the process of a nebulizer treatment when I walked in. 
They kept her for a while afterward, to make sure she would not have a rebound reaction.  When they discharged her, she was doing well, but still weak.

She came over for supper last evening, still not feeling well.  She had not taken the oral steroid.  The doctor told her she did not need to take it *if* she felt better.  But she was not feeling better!  Teenagers!!  She was still short of breath and weak.
She got a lot of good natured teasing from the rest of the family about "not knowing oysters are shell fish"!  She thought she just needed to avoid the crustations, not the ones on shells, like oysters and clams!  We told her we think she should stick to land critters.  She told me she had planned to have Miles just take her home, not to Urgent Care!  Oh, my!

Allura is my independent girl.  She likes to do things herself, not be spoiled and pampered.  Likes to be just left alone when she is not feeling well.  But she wanted her mom, she needed me.  That is a good feeling.  I will remember that the next time she is spurning my desire to baby her.  I will secretly smile, knowing she still needs me to love her:)  I could have done without the crisis though. 

After the past few weeks, I think I need to see if they make industrial strength hair color!  I doubt I have a hair on my head that still has natural color!  Thankfully, Allura is a good hairdresser!

Insult to Injury, or Injury to Insult

Aaron came to me on Monday to ask me to look at the healed wound on his butt.  This is the large pressure wound that was caused by the edge of the board the doctors had underneath him during the resuscitation in July.  The last little bit of scab had finally healed about 2 weeks ago.
The area, about the size of my fist, had developed a raised, red area in the center, about 1 inch by 1/2 inch, painful and warm to the touch.  I emailed our doctor right away, and he called a prescription over to our pharmacy, with instructions to start it imediately, in case it was MRSA.

By Tuesday it was looking worse, so I made an appointment to have it looked at by the doctor.  He wanted me to keep an eye on it, and continue the medication.

Aaron was outside playing football last evening, with his brothers and sisters.  He decided to try to tackle Bethany.  Somehow, he managed to fall on one of the beams we have edging our parking area.  He hit his butt, right across the tailbone area.  He hit so hard that he was winded, and saw black spots, or as he called them, black blobs.

He got up this morning barely able to walk, and sitting caused him a lot of pain.  I gave him ibuprofen and called our doctor.  By the time we went in, the ibuprofen was working nicely.  But I wanted the doctor to see his wound again, since it had some changes since earlier in the week.  It has developed a red spot in the middle of the raised area, that looks thin and ready to break open.
The doctor agreed with my assessment, and has decided to send Aaron to a wound care specialist.  He wants the plastic surgeon to have a look and decide if the wound needs opened up to remove any infected tissue, and if it needs some of the scar tissue removed.   He said he has seen a lot of pressure sores, but has never seen one look like this after it has healed.   We have an appt. next week.  In the meantime, Aaron is to continue taking his antibiotic and ibuprofen.  He is also to avoid rough housing and other activities that could cause more injury to the area. 

Constant Changes

When our second child left the shoe in August, we began discussing the sleeping arrangements in our household.  We had an empty room, and needed to move some beds around. 

Our plan was to move Bethany and Sarah into Allura's old room.  It is slightly larger than the one they had been sharing, and it is one of the two bedrooms that has usable closets.   And, we planned to move Trinity into the girls' room.  But there was disagreement, so we put off the moving.  The bedroom sat empty these many weeks.  Well, not quite empty, Allura still had a lot of clothes in there, and the bed she slept in was there.  The empty bed came in handy the nights our oldest came to stay.  It was a blessing to be able to offer her a quiet place to rest.
Bethany did not want to move, and she did not want to stay in her current room alone.  She enjoys being with others, and tends not to like change.  So, Sarah moved over to Allura's old room alone.  And Bethany chose to share her bedroom with Trinity. 
Last night was the first time Trinity slept in her new bedroom.  Until now, she had been in my bedroom, first in the bassinet, which she really did not sleep in, and then in the portacrib.  We brought the real crib down from the attic over the weekend and put it together.  We finally put sheets on it yesterday.
I went to bed, last night, for the first time in 2 1/2yrs, without my baby girl in the room with me.  My calculations are not off, she will be 2yo in December, but before her birth, she was very much sleeping in the same room with me:)  I was very torn about it, I laid awake for quite a while, listening for her, ready to run upstairs and bring herr back down with me.  But she slept all night, is still sleeping peacefully at 9:30am.

So, it looks like my next project is to fold up the portacrib, and put it away, and rearrange my bedroom.  Bethany is not the only one who has difficulty with change:(

Observing Faces

I like to look at faces of people.  When I am out and about, I enjoy looking at faces, especially the eyes and mouths.  I like to see if they look friendly, troubled, grouchy, etc.

Lately, I have been noticing something rather interesting.  When I go out in public with Christopher, he gets noticed.....a lot.  I can tell by the faces of others how they percieve people with disabilities, and more specifically, my son. 
Some of the faces show that the person does not see the disability, only the amazingly cute little boy with blond hair and blue eyes.  Some of the faces show they are repulsed by his features, or, perhaps it is just the fact that he is who he is, that repulses them.  Some faces show pity, for him, for me.
Some of the faces are able to quickly cover the initial reaction to seeing the little boy with Down Syndrome.  Usually, this is by fixing an artificial smile, where the scowl had been.

I have been taking mental notes on the ages of the people and their reactions to my son.  Even noting the gender of the onlookers.  What I may say next may surprise some people.
I have noticed that young men, in their late teens and early twenty's seem to be the most accepting of my son.  They frequently smile at him and more often than not, interact with him in some way.  They do not seem to notice the characteristic facial features, or seem to care.  Christopher initiates interaction and they respond in a positive way.
The next age/gender group that stands out to me are the women who are in their 30s and 40s.  They look at Christopher with sadness, and then look at me with pity in their eyes.  I meet their gaze openly with a smile and "hello".  I hope in our brief encounter I have given them a glimpse of reality, that I do not desire or need their pity because my child has an extra chromosome.  They have looked into Christopher's smiling face, and then into my smiling face, hopefully, they understand our unspoken communication.

The next age and gender group is the tough one.  This group consists of older men, age 60 and above.  Many of these men will look at my son with repulsion.  Some with contempt.  Some will then lift their eyes to mine, and I give them a smile and greeting.  Many will avoid eye contact with me, like they somehow think they know a secret about my son and don't want to reveal it.  Or maybe they are are repulsed by the fact that not only do I dare keep my son, but I also take him on outings, with the rest my children.
I have to remind myself that it was during the lifetime of this last age group that people began keeping their children with disabilities at home.  Prior to this, the so-called experts convinced parents that their children with Ds were too much work, had no potential for a productive life, took too much out of the parents and away from the other children in the family, they just were not worth the effort.  So, they placed them in institutions to be "cared" for by professionals and paid attendants.  Thes children lived up, or down, to their expectations.  They did not learn, they were never able to lead productive lives, and they even had a shortened life span.  Is it any wonder that many of the people in this age group still carry the misconception that people with Ds have no hope for learning and life? that they will be adults sitting in their own filth, unable to even go to the toilet?
How do we overcome the mindset of these older people?  People with Ds have been demonstrating for decades that they can and do learn, they can find meaningful jobs, they can have friendships, and they can be independent, productive people.  Yet, the mindset continues.  Do we just wait, and bide our time until there is no one alive that remembers the evil days of institutionalizing children just because they have an extra chromasome?  Do we try to educate these people when we have an opportunity?  Do we expose our children to them and their close-mindedness, in hopes that they will be won over by the freindliness and unconditional love for which our children are well known?
I don't have the answers to those questions.  But I plan to continue taking my son out and about, and letting him smile and interact with others.  I plan to continue living my life and enjoying it.  Perhaps people observing us will have a heart change, if not, well....I plan to continue living my life and enjoying it! 

****Please note, I do not consider all people of certain ages/gender to be a certain way.  I was generalizing.  I have encountered some young men who have been not so pleasant, and some older men that have enjoyed talking to my son and me.  I only wish to share my observations. 

****Older men can have a change of heart.  My very own father was close-minded regarding people with disabilities, until his grandson won him over!

The Little Things

I have moments of fear, from time to time, that I am inadequate when it comes to  teaching my son, Christopher, who has Down syndrome.  I worry that maybe I am not giving him enough of everything that he needs.  Yes, I had those fears with regarding my other children, but nothing to the degree that I do with Christopher.  And you know what?  I cannot give any of my children everything they need.  Only God can do that!  God is the one who equips me to do everything he thinks I need to do.
I know that fear does not come from God, it comes from the enemy.  I have to keep reminding myself of this fact!  God has not given me a spirit of fear. 
It is hard, especially when all the books and websites say that I should be sending Christopher to special preschool, PT, OT and ST.  Who am I?  Just his mom, with no college degree, just my little LPN.  I specialize in nothing.
But because I am Christopher's mom, I have have a greater investment of love in Christopher, that no paid stranger could ever have.  Because of that love, I keep him busy, working on those gross motor skills.  I also help him with activities that will strengthen those tiny muscles to improve his fine motor skills.  We sing, we talk, we read books, we counts, we play with blocks, we play with flurp and kazoos.
Many of the little things that I did with my other children, without thinking, are now planned out and done with intent with Christopher. 
Christopher can now count to five! He is using many signs and word approximations, and actual words.  He is learning to recognize a couple word flashcards, and will say and sign the words.  Yes, he is learning to read!  Little by little!
Most of my children did not read any words at the age of 4 1/2yo.  They could speak clearly, though.  Christopher can read a couple words, but cannot speak clearly:) 

Christopher is not showing any signs of being ready to potty train, he does not enjoy sitting on the little potty.  I am hoping as Trinity begins to potty train that he will want to, as well.  In the meantime, he continues to wear his big size 6 diapers.

There are times that I think I should see progress each day, rather than looking for progress over a longer span of time.  So, as I look back at the last few weeks, I see things that Christopher has learned, or has fine tuned.  Things like being able to string noodles, using a big tapestry needle.  He could do that for a while, but lately, he has discovered the best way to hold the needle and can quickly fill the entire string. 

Little by little, day by day, he is learning, just like my other children:)

Another Day Out With Thomas Event

My oldest daughter, Crystal, and I took "our boys" to see Thomas the Tank at the Strasburg Railroad yesterday.  I am glad I had left Christopher back at the shoe with Daddy and Trinity, since it poured rain almost the entire time.  He would have been miserable, and most likely would have ended up very sick.

Crystal brought her boyfriend, Patrick.  On the way there, my boys were making plans about who was going to get to hang out with Patrick the most.  I had to remind them that Patrick would probably like to hang out with Crystal the most.  They did not think that sounded like much fun.  Oh, well, they will understand someday.  Patrick fits in well with my sons, a little too well sometimes.  It is never a dull moment.

In spite of the rain, we had a good time and were able to ride most rides.  Aaron got to have his first experience on the pump car.  He and Crystal went on it together.  Crystal was very out of breath when they got off the car, Aaron, not so much.  Not too bad for a boy who almost died two months ago.

The boys, including Patrick, rode the cranky cars.  We also rode the Little Cagney.  And of course, the train pulled by Thomas:)

Patrick likes to encourage the boys to make silly faces for the pictures, then he straightens up just as the picture is being taken, leaving, mostly Jesse, the one on the right, to still be making a goofy face.

Aaron, Josh, Patrick, Jesse (with the goofy face) and Seth.

 Crystal is completely oblivious to the goofy face Patrick is making.  She thinks we deleted this picture:)

He can be serious when he has to be.  This is after many attempts for one decent shot.  Crystal would not allow him to do the bunny ears behind her head.  Such a stick in the mud:) 

Aaron's EGD

Aaron had the scope put down into his esophagus on Tuesday. 
The day started off frustrating.  Our van left is sitting after getting gas.  Thankfully, a kind man gave it a jump and we were able to pull it out of the entrance of the store parkinglot.  But I was leary about driving another 30minutes and having it cause more trouble further away from home.  My oldest daughter, Crystal, had plans that fell through that morning, so I called her.  She came and got us, and waited with me while Aaron had his procedure done.
When we got into the surgical center, I mentioned that I had discussed with the pre-anesthesia nurse that we were not comfortable with him having Propofal, and she had assured me that there were other options for anesthesia.  Well, the anesthesiologist came in and said there weren't really any other options, since it was not in the main hospital.  He said that whoever had reviewed Aaron's chart had cleared him for Propofal.  He was gracious enough to go searching for something else, but made no promises about finding anything.  I sat there, feeling the anxiety rising, feeling like I could not trust them.  He returned after a while to tell me he found another medication and we were set.  Praise God!

The scope showed that Aaron has strictures at the bottom of his esophagus, consistent with longterm acid reflux.  He asked if Aaron had complained about burning or pain in the past.  No, never, not until after his illness in July.  I have always described Aaron's appetite and eating to that of a rottweiler puppy, gobble it down and look for the next bowl.  He also questioned how Aaron was as a baby, less than 1yo, if he spit up a lot.  Yes,  he was a horrible spitter.  He would spit up hours after nursing, and it would be the consistency of sour cream. 

The GI doctor thinks what happened is that Aaron has been having reflux, possibly since he was a baby, which caused some scar tissue to build up.  Then, when he was sick in July, the excess vomitting, and then the NG tube, caused the scarring to become worse, making the opening more narrow, til it was too small to allow larger peices of food and medication to pass through.

The plan:  They will be stretching his esophagus at a later date.  They could not do it on Tuesday, since they needed to do biolpsies, to check for eosinophilical esophegitis (which was negative).  They also increased the frequency of Prilosec.

We are thankful it was not neurological damage.

Another Birthday!

We celebrated Aaron's 12th birthday today!  His birthday was actually on the 7th, but we had his party today.  What a blessing to be able to celebrate his day of birth after facing the possiblity of mourning his death.  I am in awe of the greatness and power of our God! 
On Wednesday Aaron and I sat and looked at his baby pictures.  He was such a cute baldy baby.  He weighed 8lbs 8oz at birth, and was one of my smaller babies.  Before his illness he was always hungry, he never lost weight, as many newborn babies do, but gained right away.  After his initial weight, he was always on the large side, or off the top of the growth charts.  When I look at him today, my 5'5" son, I am amazed that he was once my tiny son:)
When I think that only a few short weeks ago he was in renal failure and cardiac arrest, and is now almost back to perfect health, I am amazed.  We were so close to losing him, and now we are back to chasing him down to do chores and schoolwork again.
Thank-you, Lord, for sparing Aaron's life!

Sorry, not the best pic.  My cell phone is picky about lighting, and Aaron seems to blink in every pic lately:)
Sarah, 14yo sister, thought it would be funny to put all those extra pink candles on Aaron's cake.  I am surprised it did not set off the smoke detectors when he blew them out!

Ophthalmology Visits

I feel excited to be able to blog about something other than Aaron's illness, even if it is about other children with doctor visits.
Josh, Christopher and Sarah had appointments with Dr. McManaway today. 

Sarah was being seen as a follow-up for the corneal abrasion Christopher gave her in June.  She is back to normal.  He did a complete exam, and does not need glasses. She does not need to go back unless she gets gouged in the eye again:)

Christopher had his annual eye exam.  He did well.  There has been no change in his vision, not better, but not worse.  The nystagmus, however, is gone!  He had developed that before he was 1yo, and it is finally resolved.

Josh had a follow-up for his PHPV and aphakic glaucoma.  His IOP was stable.  He will continue to use his two eye drops for glaucoma.  His vision is stable, no changes in his contact lens or glasses prescription.  He will continue to patch his left eye two hours each day.
But his right eye is beginning to drift in and up again.  We go back in three months for Dr. M to have a look at it again.  Somewhere along the line he will probably need another surgery to straighten it, but not yet.  (I am not eager to go through another child having anesthesia, so I am happy Dr. M wants to wait a while.)

Trips to Hershey really take a huge  bite out of my day, but it is so worth it to have the peace of mind that my children are getting the best care available. 

Some Follow Up

Aaron had an Upper GI with a baruim tablet last week.  They wanted to see how his esophagus was functioning.  The radiologist was a bit puzzled.  The tablet sat at the bottom of the esophagus for 10 minutes before it dropped down into the stomach.  There was nothing there to have caused the tablet to not pass right through.

So, that means he will need an EGD on September 13th.  He will be under anesthesia for this procedure, so that has me a bit concerned. 

Aaron also had blood work done this week.  His CBC and BMP were fine.  He has completely recovered from renal failure and cardiac issues. 
His final Lyme test was negative, like the two previous tests.  So, we officially know what did NOT cause Aaron's illness.  They mystery of what caused our son to be so seriously ill may never be solved, and remain unknown to all but the One who created him.   

Aaron is doing well.  We are getting back to "normal" life.  He is doing school work, and trying to see how much he can procratinate.  Very typical for Aaron:)  His sore on his bottom is slowly healing, much better than it was, but not healed yet.  So he is enjoying getting to go around in his PJs and boxers when we are home.

He is looking forward to taking his hunter's safety course this fall, and hopefully going hunting for the first time.
Oh, and he is enjoying doing the goofy eyes whenever he wants.

Behind the Scenes

While were at duPont Hospital with Aaron, so much was going on at our house.
Our oldest two do not live at home anymore and work full time. Our third child was at summer camp the week we left, and volenteering in the kitchen the following week at the camp. This left our 14yo daughter at home in charge of 5 children, ages 10 and under. If I were only running to the store to pick up bread and milk, this would not have been a problem. But we had no idea how long we would be gone, and it stretched into 1 1/2wks.

The night that Aaron went to duPont, our pastor came to the hospital to be with Gene and I. I found out later that his wife and daughter came to our house to be with the rest of the children.

The next day, the church sent out an email about Aaron's condition. The church was flooded with phone calls. People wanted to know how they could help! The church secretary organized a few days of meals and care for the children. At one point, they had to put a hold on the meals, our refridgerator was bursting at the seams with food. (Of course, Gene and I, and Bethany, were not home, and our biggest eater, Aaron, was not home to eat.)
When the church secretary went on vacation, she enlisted the help of one of the other ladies. This dear lady has five children of her own. Yet she spent much time at our house, mowing the lawn, doing laundry, cleaning, running errands etc. Her oldest daughter spent a couple nights to help with the children.
My children were not alone at night, married women gave up time with their husbands to sleep here on our sofa. Single young ladies gave up their own time to care for my children.
One family came and took my children to their home for the day. They rode horses, and played games. Not only were my children having their basic needs met, they were being loved, and shown fun times.

When I got home, there was a schedule, written in crayon, on my refridgerator door. It kept Sarah informed who was bringing a meal, and who was coming to spend the day and the night. Someone must have known how Sarah likes to be on top of things:) I thought it amusing that it was written in crayon, as that is often all I can find to write with in a hurry at my house.

What a blessing! I praise God for each and every person in our church family that ministered to us. Thank-you Timberline Church!