Update on Beth

Beth saw a rheumatologist today and she does have juvenile rheumatoid arthritis in both knees (JRA). She has the least serious type, called oligoarticular. She may grow out of this (50 % do) in late childhood or earlier. She is ANA negative, so she is not at increased risk for eye involvement, though she will have eye tests every 3-4 months to be sure. 

She will be on naproxen (an NSAID similar to ibuprofen) for a couple years (unfortunately), but it should treat the inflammation well enough to take away most of her pain and all of her limp, and prevent permanent joint disabilities. She should be able to get around normally in a few months, after the full therapeutic affect is seen. Blood tests to check for side affects will be done every 4-6 months. They do not see liver or kidney damage in young kids from these drugs. Ulcer is sometimes, but uncommonly, seen. 

She will have regular physical therapy appointments as well.

One of my worst fears is that since autoimmune diseases tend to occur in twos, that she is at increased risk for another auto-immune disease. The doctor confirmed this and said they do see teens with JRA get Type 1 Diabetes, or sometimes, lupus.  MS is not seen.  These are not regular occurrences, but they do watch out for these other diseases. We will be praying hard that this is her only disease. I know carrying a baby to term is particularly hard on diabetes patients, so that really tugs at my heart. I want her to live a normal life, including being a mommy.

Please pray for an exceptionally early remission and no other diseases and no side affects from the meds. Thank you.

The doctor thinks the knees will be the only joints involved, but in the next five months if no more than four joints total become involved, she will still have a good prognosis.

We were able to cancel the MRI, thank goodness. My husband just read in the Wall Street Journal yesterday that young children with still developing brains ( 0-4 yrs old) are at risk for learning disabilities after going under anesthesia. Hearing that, we were even more concerned about the MRI with sedation. So happy to be avoiding that test!  

The kids at greatest risk are those that undergo anesthesia more than once, before two years old.

Homeschool Life, Early Reading Myth, and Gospel-Reading Homework

The new Bible Study homework is to read and journal Luke 15 - 25, which finishes the Book of Luke. Sorry for getting behind on this. This homework is due on Friday, October 7.  

The next assignment is to read and journal John 1-5, which is due on Wednesday, October 12.  

If you want the Thanksgiving books for reading the Gospels along with us, please e-mail me or comment on any post on Wednesday, October 12, letting me know you read and journaled along with us. If you are the first to comment or e-mail on that day, I will send you the books. Just e-mail me with your address. Thank you. 

christine4431(at)ymail(dot)com

This post explains why we decided to read all the Gospels consecutively.

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Homeschool Life & And The Early Reading Myth

No matter what life looks like in any given week, homeschooling must go on; consistency is key. In traditional school if the teacher is sick or otherwise down, a substitute shows up. 

In a homeschooling environment learning depends far less on a teacher being constantly present. Children take control of their own learning early on, because often Mom is changing a diaper, fixing a boo boo, helping someone else, or shuffling laundry. 

I've found homeschooling to be far easier and even richer, when it doesn't depend on packaged curriculums, which are full of teacher scripts and endless things the parent must lead. If you've never taught, a packaged curriculum is a good place to start, but you'll quickly find that less is more. 

Structured time engaged in reading, writing, speaking and arithmetic serves best to create a life-long learner....not worksheets about these disciplines, but real engagement with books, pencil and paper, and a solid arithmetic resource.

Then, kids will explore and do the hands-on on their own, if you leave them enough time for creative play.  Don't inundate them with assigned work, and especially rethink any busy work.  When they need you for one of their hands-on schemes, get involved. If not, just keep materials available for their explorations and interests.

I just heard today, for example, from Mary, who came into the house with a handful of leaves:

"Mommy, I'm going to start a leaf collection. I need some tape to tape them down."

We've already checked out a book on identifying leaves, because this happens to also be a regular fall passion for my Peter.  I'll follow up on Mary's lead by looking through the book with her, so she can try to identify her own leaves.

Simplicity and consistency make learning happen everyday, no matter what this sin-cursed earth throws your way...aging parents, chronic pain, disease, financial crisis, whatever. 

Have them read for an hour (or half-hour for beginning readers), then have them speak or journal about their reading, and later, dictate some words to them to foster sound-family acquisition, assign some math, have them choose something science- or social studies-related to read about, get them moving, and give them time to create something. 

When you have five minutes, pull them aside and do a writing conference, going over what was great, and possibly weak, about the day's writing sample. Always follow a positive, negative, positive sequence when critiquing any work.  A lot of teaching isn't necessary. Sprinkle it here and there, while being a good facilitator (not being afraid of messes :))

Pleasure reading. We are huge Eleanor Estes fans. They've been through Ginger Pye, Pinky Pye, The Hundred Dresses, The Moffats, Rufus M.(Moffats sequel), and now, The Middle Moffat (another Moffats sequel).

I don't do formal schooling anymore before six years old...and I believe seven years old is fine too. Enough research shows that there's no advantage to early reading (early means starting reading instruction at age 5). And if precious playtime is stolen trying to drill these things, the child is perhaps worse off, because young kids learn best through play, not through instruction. Yes, it's hard to quantify play-learning, but we must trust it as God's design for young children. Language acquisition, in all its forms, happens naturally through play.


Here is an excerpt from an article entitled, Why Are Finland's Schools Successful?:


Teachers in Finland spend fewer hours at school each day and spend less time in classrooms than American teachers. Teachers use the extra time to build curriculums and assess their students. Children spend far more time playing outside, even in the depths of winter. Homework is minimal. Compulsory schooling does not begin until age 7. “We have no hurry,” said Louhivuori. “Children learn better when they are ready. Why stress them out?”



Have games and activities around that include letters and numbers, but never take the lead with these materials. I had one child, Paul, fixate on letters and numbers even before turning two, and while we never denied him the use of materials, we were careful to stay out of the way. 


Recently, Miss Beth, 33 months, wanted some letter play, so I went with it and gave her pointers. Since she loves singing so much she already knew the ABC song, and it was a natural leap for her to want to point while singing. She may not display any further interest, but this week, it's her passion.

Mary, five in December, began making letters on pieces of paper recently. I've found them all over the house, full of her chicken scratch. I got out the Handwriting Without Tears items and showed her how to use them, in case she had real interest in learning to print. She was thrilled, so today she learned how to properly make an E and F. 


Again, this may be the end of it for now, but today it made her happy. 

Here is Paul, learning to type using a program Jess blogged about.

Here Beth is measuring how many things she can find that are as tall as her pointer.

Beth is moving better yesterday and today. I am encouraged, because the best indicator of active disease is the morning stiffness and stiffness after prolonged sitting. That hasn't disappeared, but any day it appears better encourages me that maybe a remission is on the horizon?

Here she's rolling down the hills during homeschool soccer class.

Grief and Fright

I'm frightened now. Very frightened. 


And grieving so much that sometimes it hurts to take a deep breath. Beth had short-lived low-grade fever Tuesday and Wednesday, indicating the second most serious sub-type of Juvenile Rheumatoid Arthritis, called the polyarticular type, which affects many joints and can lead to severe arthritis that persists into adulthood for some people. It requires aggressive drugs and in some cases many different physical therapy devices to help people gain self-sufficiency (due to the impairment of small joints involved).


Six weeks ago, I had a normal, lively child. Now I look at her and see a regressed toddler who wants to nurse several times an hour and cries when I'm out of her sight....even for fifteen minutes in the shower.


I'm a caregiver by nature and I've always loved caring for sick children. It's only a burden when I'm also sick and weak. So Beth needing me more now isn't a problem for me, which I guess is a grace in all this?


This disease is cruel and variable. Some days she can't walk at all until late afternoon, and on other days she can walk and dance within a few hours of waking, but then a few hours later she'll no longer stand up. Every day is different.


Yes, she still laughs at times. She's still silly and lovable and a huge, indescribable blessing. But she has moments, perhaps those of greatest pain and grief, in which she just wants to nurse and nurse and be wholly comforted. It's such a blessing that through nursing I can provide something for her soul that comes straight from the heart of God. Nursing was His idea and I'm praising Him anew for the gift. This kind of comfort exists in no other form on earth, save for maybe a filling of the Holy Spirit. And years spent long with a faithful husband?


One of the reasons I never weaned her is because I always wondered....what if my sweet girl gets cancer and needs to nurse through the horrible pain? If she had bone cancer, I believe it would have shown up on the x-rays, so I've all but ruled that out. Lupus is possible, but rare in someone so young. I don't suspect Lyme Disease--which can cause arthritis--because there was never a bulls-eye rash. There are two aunts and two cousins on my mother's side with auto-immune diseases (lupus and MS). Juvenile rheumatoid arthritis (JRA) is also an auto-immune disease.


I read that parental grief is always there, in one form or another, with this disease. Sometimes relief comes with remission, but then fresh raw grief arrives with the flares. Some kids have continuous trouble for years and never experience remission.....a prospect I can't imagine. The emotional stamina would only come by miracle.


I'm working on developing the mental framework for a new normal. But not knowing how bad it will get makes that extremely difficult. I won't know for possibly another five months if she has the very destructive type (systemic), the semi-destructive type (polyarticular), or the most common and less serious type (oligoarticular).


I know the core of my problem right now. 


I want to believe she's mine. 


But our children are never ours. They're His and He writes their story. 


We don't know how long they'll live, how well they'll live, or how much pain they'll endure. We can only cling to the notion that the journey and the outcome are for His purposes......Holy and mysterious.


We must daily give our children to Him as an offering, as Abraham did with Isaac.


Genesis 22:9
When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood.


James 2:21-22
Was not our ancestor Abraham considered righteous for what he did when he offered his son Isaac on the altar? You see that his faith and his actions were working together, and his faith was made complete by what he did. 

Worsening

Just a quick note:

Beth's other knee is now involved and her ability to get around is more impaired. Today, Monday, she crawled around until 4 pm, whereas other days the stiffness subsided in a couple hours. I cried for much of the morning over her invalid status and her apparent depression. She asked to nurse about every twenty minutes. Thank God I never weaned her. 

I've been using ibuprofen twice a day, but today I gave a third dose at 2pm, (6-8 hours apart) which helped her get around finally at 4PM. Perhaps she rode her bike for too long yesterday? It's important to balance rest with exercise and it takes trial and error to find the right balance. Ibuprofen is not a benign drug, but this disease used to be a horrible life sentence for children and drug therapy has changed that. I can't be afraid of these drugs....especially since she might need steroid injections in her knees.

I called the orthopedic doctor and asked for a pediatric rheumatology referral, due to the other knee involvement. Calling the referred doctor's office, I learned that Beth would have to wait until November for an appointment. I made the appointment but asked to speak to a nurse about Beth's reduced quality of life....sleep problems, depression and poor eating, poor mobility.

I also put out a call for prayer via e-mail. An hour later, a nurse called and moved Beth's appointment up to October 4.

Thank you for your prayers. 

Today, as I watched my 33-month-old girl crawl around--Miss Beth, who has been walking since 8.5 months old--I was reminded of the full wrath of God. Of course, disease is a result of the sin curse (we couldn't have prevented this and we didn't do anything to cause it). When disease and pain manifest in your own innocent child, it's impossible not to come to terms with the wrath of God.

He is faithful, mighty, merciful, loving, forgiving....yes. All of that. But he is to be feared. He is Holy.

You don't truly know God until you come to terms with both his extremes....his work on the cross (his agape love) and his wrath.

oligoarticular JIA

I'm fairly convinced that Beth does have rheumatoid arthritis. She keeps her affected knee slightly bent, which is characteristic of the disease. She also has morning stiffness and stiffness after periods of inactivity, accompanied by nighttime pain and sleep issues and daytime neediness.


Children with the most benign and most prevalent subtype of juvenile rheumatoid arthritis, oligoarticular JIA, present as girls between the ages of 1 and 6 years old (with 1 to 3 years old most common), with one knee involved (or another weight-bearing joint).


If the disease involves four or fewer joints in the first six months of presentation, it remains a mostly benign condition with good prognosis (no long-term disease or problems), but eye involvement must be routinely tested for, as a complication of this subtype can lead to severe eye damage and blindness.


The earlier the disease is treated, the better the outcome. Judging from changes in Beth's personality, I would say she's had mild signs of arthritis for at least two to three months.


The MRI, which I don't think will show any injury, is still about two weeks away. In the meantime, to understand how best to care for her, I am taking her to see her regular doctor as soon as possible. She needs ibuprofen to control inflammation and pain if she has arthritis, and she needs daily exercise--preferably bike riding or swimming. 


The number of weeks involved, the approximate time of presentation, and the number of joints affected (a thorough physical exam can identify affected joints), all must be carefully recorded and monitored to ensure an accurate subtype diagnosis and subsequent treatment, with the goal of maintaining an active, normal lifestyle, controlling pain and inflammation, and ensuring psycho-social well-being. The sooner she can get a referral to a pediatric rheumatologist, the better, as controlling the inflammation is essential in protecting the joints from permanent damage. This starts with drugs classified as NSAIDs (ibuprofen and naproxen).  If these don't work to control inflammation, steroids have to be used, which have stronger anti-inflammatory action.


If the disease goes on to involve more than four joints after six months, or if smaller joints such as fingers are involved, the prognosis is more complicated.


I have to carefully avoid overprotecting her--something which typically occurs in parents dealing with the chronic pain of a child. The other siblings can grow resentful, and the affected child is less prepared to deal with things autonomously, as he or she grows older. 


I wish this were a case of jumping to conclusions after too many Internet searches, but the signs are too obvious, and frankly, I think the orthopedic doctor was pretty sure she was an arthritis presentation. He only ordered the MRI to completely rule out an injury.


Part of me wants to scream and cry and throw things, but I think I'm stronger than that now. The best thing for Beth (and the others) is that I take this in stride as quickly as possible--while still praying vigilantly for her and holding her through the pain. 


She will be better for this.......more sympathetic to others, softer around the edges, stronger internally.


What is God using to make you stronger these days?