What we lost on the journey and gained on the journey is unclear. But all of a sudden, it just doesn't matter. What we thought this battle would be, what rations we would take, where we thought we would find supply posts, how many days we thought we could sit in a trench, where we would find the enemy, and what we thought we would do when we met the enemy...all those expectations, I finally stopped shouting those expectations to God. That is where we have been for 18 months. Building up, breaking, spilling over, again, again, and again.
The StatsM has been home 2 and 1/2 years. She is eight and a half years old. She weighs 19 kg, is 105cm, and is wearing a 5t. She came home one day shy of her sixth birthday wearing a 2t, weighing 12.4 kg, and was 98cm.
Medical, In a NutshellM has been given the diagnosis of intractable epilepsy. What does that mean? That means the traditional medicines aren't going to work. Doctors are admitting this now. We are at palliative care in terms of seizures. We can hope to lessen them, but she will always have seizures.
During a sleep study, a modified EEG revealed her seizures are probably originating from the frontal lobes and spreading to her entire brain resulting in the tonic-clonic seizures we see. Frontal lobe epilepsy (FLE) affects individuals of all development levels and scientists know very little about the frontal lobe and it purpose. This discovery doesn't give us a prognosis. However, it validates our experiences. FLE causes very strange behaviors when individuals are having seizures. Apparently, individuals can be misdiagnosed and referred to psychiatrists, when they start experiencing seizures in the frontal lobe. Vocal outbursts, laughing fits, crying fits, repetitive jerking movements, pelvic thrusts can all be the signs of seizure in the frontal lobe.
The sleep study revealed M had extremely fragmented sleep, and was never getting to REM sleep or to deep sleep. Only stage one and stage two sleep. And of that sleep she was only getting 2.5 hours! The data showed that she was "awakening" every 10 minutes!! Can you imagine only getting 2.5 hours every night for years? M had a tonsillectomy to widened her airway for improved breathing and thus improved sleeping. Her breathing is still impacted by excess floppy skin around her epiglottis and larynx but she seems to attain borderline normal breathing by sleeping on her stomach, so we will not be having surgery at this point to remove that skin.
We have worked our way through five different epilepsy medications (depakote, keppra, lamictal, zonisamide, benzel) with their own array of side effects and withdrawal symptoms. I believe that they must work for some people, but for the past year they wrecked our daughter. Last September, M was learning to ambulate with a pediatric walker. She was still seizing regularly so we tried a new med. Slowly, very slowly, imperceptibly, her seizures got worse. Then she got worse. She stopped trying to walk, to stand. Over the next 8 months she started losing weight, was dizzy to the point of falling during crawling, and became extremely emotional. She had lost 3 kilograms of weight and was getting slated for another g-tube insertion in August. Seriously, surgery to place a feeding tube (again!) was on the calendar. It was a nightmare.
The process for epileptics concerning medication seems to be:
1. start with the medication with the least side effects.
2. gradually increase to the highest level possible, while checking blood levels for liver function, kidney function, and the rate of metabolizing the medication
3. if not seizure free and can't go any higher on the dosage, start a new drug
4. while starting new drug, slowly wean off of old drug
We had asked about the ketogenic diet. The ketogenic diet clinic was closed to new patients because of staffing. Staffing. It wasn't that M wasn't a candiate. It wasn't that it would not rescue our family from this nightmare. It was staffing. Because the normal protocol wasn't working we got transferred from the Neurology department at Children's to its subdepartment of Epileptology.
|Bruising from M repeatedly losing her balance and slamming her chin into the ground while crawling (at the time she was on zonisamide and lamictal)|
I think it is interesting that the threat the neurologist presented to us was death. First of all, we are Christians. We have professed that death has been conquered. It has lost its sting. I would see my daughter again. She would be more complete and well than I ever expect her to reach in this life. Second of all and universally, was M really living? She was in agony. She was medicated to the point of not being able to sit up or eat enough to sustain her body weight. Emotionally, if she had been cognitively capable, she would have been suicidal. Does death sound threatening in these circumstances? We were being merciful. And we did keep the medical team informed of our medication changes and kept her rescue seizure medication on hand.
|Last days of School June 2015|
The first day of withdrawals M screamed for two hours. The pain of the withdrawal symptoms was incredible for her. We had stepped down one pill. One of eight. We had Oxycontin left from her tonsillectomy and we administered it. Within twenty minutes she was asleep. School would be finished within 4 weeks so waited until then to continue peeling off pills. After that night we established a routine with the detox. No faster than 1/2 pill decrease every two weeks. Three days after every step down, M would have a day of seizures. And only on day three. Pain was managed with motrin and tylenol. We started charting the theoretical levels of the medication in M's system so we could understand how the rate of decrease affected the withdrawal symptoms. If the rate of decrease was too steep, M would have terrible withdrawal pain.
|Chart that we used to track the blood levels of the zonisamide|
|At Mt. Rainier, in middle of detoxing off of Zonismide.|
Since stopping all traditional medicines, M has gained back all her weight and then some. She is not dizzy and seems more lucid. The combination of diet and CBD seem to hold the seizures at bay as well as they ever have been. She is now experiencing about 1 daytime seizure every 4 weeks. At its worst we were seeing several seizures a week. Nocturnal seizures are still a regular problem as they seem to be a different sort of creature.
What was the first epileptologist appointment like? He introduced himself and then proceeded to share why he was going to be following M's case. We had been mis-managed, in his view, by our former neurology team. M had been on too many medications at too high of a level! We could continue the medications if we wanted, but they weren't going to work. What God had presented us with in April, the epileptologist confirmed in August! Under the former neurologist team, we had performed some follow-on genetic testing including an epilepsy panel. This panel closely examines a genome for specific mutations that others with epileptic syndromes have had. The results were back with mutations found on SPTAN1 and two copies of her KCNT1 genes. Mutations on these genes have been associated early infantile epileptic encephalopathies 5 and 14 (eiee-5 and eiee-14).
|Waiting for the bus, October 2015|
M's mutations are different than any other recorded mutations on these genes. In other words, her genes are "wrong" in different ways than others' have been "wrong." The epileptologist feels that these differences are significant in the diagnosis and prognosis of M's encephalopathy. While she has some of the same symptoms (severe developmental delay, no methods of communicating, hypotonia, frontal lobe seizures, tonic-clonic seizures) of the documented eiees, if she had the identical encephalopathies, she probably would have died in Bulgaria because children in the US are hospitalized from birth due to complications of these encephalopathies. So it is unlikely that research into these encephalopathies (eiee-5 and eiee-14) would give an accurate picture of M's prognosis. We were presented with some hard-to-swallow odds. 1 in 20 people with intractable epilepsy and severe developmental delay (a marker of brain dsyfunction) will die from Sudden Unexplained Death from Epilepsy (SUDEP.)
DevelopmentalM's development is exactly where it was in the last post. Complicated by the neurology medications discussed above, we feel like we lost most of the year battling side effects. Side effects that left her sick and unable to even try to perform new tasks. I do think that some of the effects of the orphanage have lessened. Her eye contact and sensory dysfunctions have seen some minor improvements. We'll see what the next year brings.
|Surprisely, she really liked being up on Paul's shoulders. She seems to like bumpy rides and actions. She will lay on her side and roll her toys into the wall to feel the slam and then giggle. October 2015|
Comparisons are never healthy, this I know, but I've made them between M and others from her orphanage. M's needs didn't seem as severe as others, yet her development doesn't seem to be faster in any sense. We have read about others coming home and learning to say 'mama,' learning to walk, learning to feed themselves, or just becoming solidly happy. The term I hear often used is: 'a joy in their family.' M hasn't made such obvious progress.
Overall, she is still about 9-12 months old in her development. She is pulling to stand. She is eating purees with a slightly lumpy consistency. She is learning to use a pediatric size walker; we steer the walker and she pushes it along. (The gait trainer did not work for us, as it is too large for her to maneuver in our home around furniture and through doorways.) She can handle about 15 ft using the walker before she tires. It was raised at an appointment by a practitioner that we should really consider whether we want her to learn to walk independently, given that her cognitive age doesn't seem to be increasing. For safety reasons, we may not want her to be standing at counter heights to pull things down on herself or to be able to wander through a house. That would require more eyes on her and make the job of keeping her safe more difficult. An ugly reality there.
Her verbal skills remain the most delayed to about a six month old level. We believe her receptive language is about 10-12 words. We haven't seen any improvement in her spoken language; all advancements there seem to be fleeting.
M became a sister again in January 2015. We gave birth to another little girl. They are cute together. At this point they have about the same interests in toys. It is bittersweet when our newest addition is surpassing M's milestones, already.
|Christmas Morning 2015|
Emotional and BehavioralM is exhausting to deal with. She whines, cries, and melt-downs often. See below for an video clip of her vocalizations. We hear this noise a lot and it still causes my blood pressure to go up, so at some point, after trying to ascertain why she is upset, I take her up to her room for a break. Smiles and giggles STILL bring us in from a neighboring room to see what she is reacting to. Sadly, most of the time it doesn't have much to do another person. We do not know what her underlying medical condition causes and what is institutionalization. We do know this behavior is called emotional lability, or Pseudobulbar affect, and is a symptom of brain damage. We are hoping for support from the Psychiatry and Behavioral Medicine clinic at Seattle Children's in 2016.
Another Pleven parent's blog, 'The Blessing of Verity,' had an excellent post discussing their daughter's development after reaching the four year anniversary of coming home. Her description of Katie sounds a lot like M. She is further along in all aspects than M, but hopefully in another 1.5 years, M will be there too. Anyway, she discusses "learned helplessness" as part of her struggle with Katie. Basically, being subjected to trauma that is incessant, and illogical, a person decides that nothing they do will stop the trauma from reoccurring. So they do nothing. As Susanna details with Katie in eating, we see with M in all areas. Even though the bowl of food is sitting in front of M and she is crying for it, she will not attempt to touch it. She will not attempt to crawl out of a room if there is a noise that she doesn't care for. She just tantrums in both scenarios. Frustrating. Research into the studies on learned helplessness show that the only method for overcoming these tendencies is to repeatedly have the person do a action with help to get a sense of success without trauma. So that is what the approach we just starting taking with M and holding her sippy cup. She completely loses it on me while I hold her hands on her cup and together we bring it up to her mouth.
As ParentsBeing a parent to a child with special needs is very isolating. We can not go out as a family because M can not tolerate most community settings either because sensory issues interfere or there isn't a way for her to participate. Car rides beyond twenty minutes can cause meltdowns. Crowds and noise will cause meltdowns. It just isn't worth it to take her. So someone always stays home with her.
Getting help for M within the home, or "services" as they are referred to, has been a struggle, but we are seeing some fruit from that endeavor. Essentially, I had to call our Developmental Disabilities Adminstration case worker and just be honest. We are near crisis. We need help to continue caring for M. We were able to get one week of respite at Pope's Kids Place in Centralia, Washington. It is a great place staffed with RNs in a home-ish setting. We felt completely comfortable with M there as they could handle all emergencies surrounding seizures. We needed that break and have a second break scheduled for January, which will use all our currently available resources through DDA. Two and a half years of around the clock care is exhausting. Realizing that this may be forever scares me.
But maybe you are reading this thinking "what is the big deal? How is this different than being a parent to a
typical child? I have to give around the clock care to my typical children. "
Examples of how M is different than a typical child:
- M is 100% dependent. She obviously can't walk, can't talk, can't feed herself, can not perform any hygiene tasks. Think about everything you do for yourself and now needing to do it twice: once for yourself, once for her. Essentially you have to live two lives, yours and hers.
- M has had 343 medical appointments since coming home July 2013. That is not counting therapy. That is every time a new provider walks into the room. Included in that count are 67 pharmacy pickups. That is a medical appointment roughly every 3 days. Fortunately, we can make a day of it and get like four appointments done back to back.
- She does not have the capacity to be reasoned with; tantrums happen and just have to be waited out.
- M is now at or above 40 lbs. Physically lifting her is hard. She does not hold on so it is "dead" weight.
- Installing equipment to lift her and transport her is expensive but a necessary step we will have to take.
- She seizes at night regularly and although we don't get up for all of them, our sleep is affected by listening for them.
- She can't eat what we eat. Every meal has to be pureed and has to have less than 3-4 carbohydrates a meal. So her recipes require label reading and a calculator. We batch prepare and freeze them in individual servings.
- With medical appointments, comes medical insurance and medical bills. Often we're are calling the insurance asking for help accessing our benefits when the process gets stalled due to errors in billing.
Instead, while we don't have a prognosis, at the current pace, she will never be able to toilet independently, take medicines independently, dress herself, wipe her own nose, understand safety within her environment, get into a car, tell someone what she wants, etc. Imagine a 40 year old woman that is like a baby. Now add to that image a 40 year old woman that will always need a medical and social services advocate. It is scary and completely overwhelming to realize this is the future as far as I can see it. My stomach tightens. My breathing becomes shallow and I begin to worry.
Furthermore, we still need to do all the other stuff in life. Like clean and maintain our house, cook meals, do laundry, hold jobs, meet our needs as spouses, individuals, and parents to our other children.
I don't think I can tell this story without it sounding like a pity party. We don't need pity. We do need understanding and help though. In 2016, we hope to draw on respite care and get more help for M within the home. We hope to get to tasks that have been put off for the past 2 and 1/2 years. Our deck is badly needing replace as the boards have rotted. We need to start planning for a bedroom and full bathroom downstairs for M to make her physical care more manageable for me.
In ClosingThere are many things we worked through this year. I look back at previous posts and I feel foolish. I actually feel foolish talking to other people about M as well. I imagine they are thinking "What did you expect?" We expected her to make gains faster. We thought we could believe the referral document on M at the start of her adoption when it said "Had a seizure at age 2 1/2, was started on medication, and never had other seizures." We thought we could look at others' adoption as a basis for our own.
I said I had been angry with God. Yep. I've tried to negotiate with God. I've given him my final offer and asked for him to take it. I've told him I'm done. I told him I think He is a liar. He didn't equip me. This was too much for me. Interestingly, I'm not angry anymore. I guess we are the in the acceptance phase of grief?? Sadness still comes regularly to play though. I continue to pray for joy and to give more of me without frustration, impatience, or martyrdom.
If it is hard, is it of God? If it is hard, why doesn't He make it easier? Why doesn't He heal her, wouldn't that be more of a testimony? Why this child?
Her quality of life is better. She is safe and she is shown love. But I don't know if we are better, as life would be easier without M. We were obedient and every morning we get up, place our feet on the floor to do it again when, from this post you can tell, we don't want to do it anymore. We have learned more patience. We have learned how to prioritize and identify distractions. For practical examples: I'm not on Facebook anymore, I don't apply makeup any longer, and rarely is my hair styled beyond a ponytail or messy bun. I don't say any of this as a prideful statement: "look at what I'm giving up." Rather, if you see me looking undone and wonder "what in the world is going on in that family?" "That mom doesn't care about her appearances..." or "getting a little frumpy..." ;) Be kind and know it is a conscious decision to meet all the other needs around me. Ultimately, living in the trenches doesn't allow for those. We are continually trying to cut out the superfluous and live according to our marching orders.
It is true that I wanted an adoption. I pointed out to God that I had wanted a different sort of adoption; and quite frankly, I still long for another chance at a different adoption. One that would have adoption struggles, but not all this. One in which the child in the story gets better. Where I can point others to adoption, and say "see, if you adopt a child with severe special needs they get better and they are a joy. " (Cause that is what you see on the other blogs, right? That their child with special needs is a joy.)
If God is going to use us to tell an adoption story, will it look like a story without the happy ending? Just a story of one-foot-in-front-of-the-other obedience. No identifiable earthly rewards? Remember the friend that didn't survive the cancer, that marriage that didn't survive a betrayal, and yet another's pregnancy that didn't end with a healthy baby...our story may not end the way we hoped. Can we be satisfied with that?
I enjoy, almost sipping on, Ann Voskamp's blog and I am now slowly making my way through her book. I read this scripture reference in her book (pg. 88), when she is addressing her questions on pg. 85 "What is good? What counts as graces?":
"The Lord of hosts has sworn saying, “Surely, just as I have intended so it has happened, and just as I have planned so it will stand..." Isaiah 14:24 (NASB)
Very similar to the more popular Jeremiah 29:11 that I often seen written as the New International Version:
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." I prefer the Isaiah passage. I think I hear in it the weightiness of God's decisions. It acknowledges the difficulties and still gives comfort that this isn't for naught. It is His.
Ann goes on to say "...and I won't shield God from my anguish by claiming He's not involved in the ache of this world and Satan prowls but he's a lion on a leash and the God who governs all can be shouted at when I bruise, and I can cry and I can howl and He embraces the David-hearts who pound hard on His heart with their grief and I can moan deep that He did this -- and He did."