How's Ainsley Kate?

The question I get a lot lately: "How's Ainsley doing?"

The short answer: "Great!"

She is off all of her meds as of early February.  It took five weeks to wean her off of her steroids, and another four to six weeks for me to see the effects of them gone.  She is such a happy baby again.  She moved into her own crib for the first time a week or so ago, and we are all sleeping better now!

Right now she is ten and a half months, eating anything we try to feed her, entering that separation anxiety stage, ALMOST crawling, and babbling "ma ma ma ma ma ma," "da da da da da da," and "ya ya ya ya ya ya."  She lives in the Ergo when we are out and about.  For the most part, she is a typical third kid and pretty go-with-the-flow.

At this point, we are having Early Intervention send a PT once a month and an OT once a quarter to just monitor her progress.  She lost two months at a time that is crucial developmentally, but we are expectant and hopeful that she will soon be fully caught up with no residual delays.  She is our little rock star baby.

The biggest risk of Infantile Spasms developing is between four and ten months.  It's rare to have a recurrence, but I didn't realize that I was holding my breath.  It wasn't until that ten month mark had passed that I exhaled.

EEG Tomorrow

I am so incredibly anxious for tomorrow to be here.  Waiting while not knowing what is going on in her tiny brain is not so much fun.  BUT we have seen vast improvements over the past month!

Ainsley is now 7 1/2 months old.  She has become more interactive and more vocal.  She can reach for a play with toys appropriately.  She can roll over from front to back and sits up really well.  She cut a tooth (today) and started solids this week.  We have watched our baby girl come back to us! Despite being on a ridiculous amount of steroids (40 mg/day), she is so sweet and joyful every day.  Now, the steroids are having the effect of preventing much sleep at night, but this just seems to make Momma grumpy.  :)  I remember being blown away by how well she slept from her first day on this earth, always giving me a couple of 3-4 hour stretches every night.  I long for those newborn nights now.  Also, the steroids are an immuno-suppressant, so we have been staying in our little nest as much as possible.  Even so, she gifted the family the flu right before Christmas.  Thankfully it was short-lived and surprisingly mild.  I am so thankful that the meds and other therapies seem to be working, but I will gladly bid Mr. Prednisolone good riddance when he is no longer necessary.

Join with us in praying that the EEG confirms what our eyes see: that she is, once again, a healthy baby girl.  No matter the outcome, all glory to God.

So Thankful

I know Thanksgiving was last week, but I can't help but overflow with thankfulness today.  We had our first re-check of Ainsley's EEG this morning, and a meeting with her neurologists this afternoon.  We KNEW deep down in our parent hearts that she was improving daily, but it is so great to be affirmed via concrete evidence.  The doctors are very encouraged with her progress.  The EEG was 60-75% improved from two weeks ago.  So, this evening, I am thankful for:

• an almighty God who, though it is not always the case that He does, has the ability to heal our bodies.
• a mountain of prayer warriors lifting up our baby girl.  Seriously, you are many and appreciated.
• family members that have been so supportive during this crazy difficult month.  I cannot imagine going through this without them.
• our pediatrician who, unlike so many terrifying accounts of Infantile Spasms that I have read, did not belittle my worries and write them off as reflux, colic, or startle reflexes.  In IS, time befor treatment begins makes a HUGE difference, and we lost no time.
• having a pediatrician in the family to answer my questions and question Ainsley's doctors herself.  There were questions regarding the drugs to use, and she helped researched and consulted until our minds were at peace.
• a pair of chiropractors who are willing to come into the office on the weekend, on Thanksgiving, EVERY DAY to help support my baby girl back to health.  We are using every tool available to us to attack this thing, and supporting her body naturally through chiropractic care, diet, and oils is a big part of that.
• a community of friends who have brought meals and cared for my kids.  They made it possible for me to focus on Ainsley and not have my family go unfed or neglected.
• one friend in particular who handled a fundraiser that I had planned in another city, driving there for the weekend by herself, for a friend of mine that she didn't even know.  Love my friends.

We will continue with her current treatment plan and have another EEG the first week of January.  We are praying that the hypsarrythmia is completely cleared by then.

One Week Later: Update on Ainsley Kate

It sure seems like a lifetime has passed in the course of the past seven days.  I have certainly experienced enough extreme emotions to last me a lifetime.

We have been seizure-free for 4 consecutive days now!!  Praise the Lord.

Over the weekend, even though she wasn't experiencing seizures, she was just like a little fussy zombie baby.  No eye contact, no smiles, just mostly sleep and crying.  She was held at all times, and was still either crying or asleep.  She wasn't eating very well.

Every day, though, I have seen small improvements.  On Monday, Caroline got her to smile for a brief moment.  We had a couple of maybe 10 minute stretches where she was interactive with us.  This continued through Tuesday morning.  Tuesday afternoon, however, it was like a switch flipped!  She woke up from her afternoon nap much closer to her normal self.  She saw in her bouncy seat while we ate dinner without protest, she was making great eye contact, and she wanted to be swaddled and put down for bed like she used to.  I wouldn't call her jovial, but she was much calmer.

Today has continued in this manner.  She's definitely not her old smiley self, but she is more awake, more aware, and at least not fussing constantly.  She is not in any mood to play, but I will take it.

Normal EEG

Hypsarrhythmic EEG

When you see what was going on in her little brain 24 hours a day, it is no wonder she was not at all herself.  Crazy chaos was reigning inside her skull.  All the time.  This is the reason many children with Infantile Spasms either fail to progress developmentally or actually regress.  They cannot continue to develop when their brains are functioning like this.  Often it cannot be controlled, or takes trying a few medications to find the right one to control it.

We go back for her repeat EEG in 6 more days.  We are praying for a much-improved or completely normal brain wave pattern!

The "God Doesn't Give You More than You Can Handle" Lie

So many seem to find solace in telling or being told this.  I don't.  I had a friend (who has traveled her own difficult road recently) affirm to me that this is simply untrue. It indicates that whatever burden we are currently facing can and must rest on our shoulders.  Where is this in scripture?

Instead, I cling to these truths, many of which have been sent to me by precious friends over the past five days:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  II Corinthians 12:9

Come to me, all who labor and are heavy laden, and I will give you rest.  Matthew 11:28

I lift my eyes up to the hills.  From where does my help come? My help comes from the LORD, who made heaven and earth.  Psalm 121:1-2 

But now thus says the LORD, he who created you, O Jacob,he who formed you, O Israel:  “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.  For I am the LORD your God, the Holy One of Israel, your Savior."   Isaiah 43:1-3

And the word sent by my sweet friend Liz when we were adopting Luisa:

"And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work." II Corinthians 9:8 

That is comfort to me.  He gives me grace to make it through, and to glorify Him while walking through whatever is in my path.

This morning, I read through the words I wrote in July of last year while struggling through our decision to adopt a child with special needs.  They ring so true today.

Finally, I realized that we CAN'T do this.
But God.
Of course. 
He is able.  In fact, His strength is made perfect in our weakness.

And then we were able to see clearly.  All of our doubts were really just opportunities to glorify Him. 

I pray that His grace abounds to me so that I am able to glorify Him in and through this and all circumstances that come my way. Friends, please keep the encouragement coming.

What's Going on with Ainsley?

I guess they call it "processing" for a reason.  This has been (and I am sure will continue to be) a process to work through.  Writing out the events is therapeutic to me, so here we go.

Our sweet Ainsley, little surprise gift, youngest of three girls, has been such a laid back baby from day one.  Everyone commented, "God knew you needed an easy baby!"  We had an easy pregnancy, easy delivery, and pretty easy time with her until last week (save one hospital stay for viral meningitis at 5 1/2 weeks).

Last week she got just really fussy.  She had no other symptoms.  She didn't have a temp, congestion, cough, stomach issue, or teeth coming in, but she was obviously uncomfortable and cranky.  In fact, she was pretty much inconsolable, which is very unlike her.  We went to the pediatrician twice to try to determine what was going on, but the only thing we could find was a somewhat elevated WBC.  We finally reached the conclusion that it was a viral something we could not see, and that we would wait it out.

This week was characterized more by lethargy.  Again, this is unlike her.  I thought she might just be worn out from whatever mysterious sickness she had the previous week, so I was still waiting for her to return to our normal sweet girl.  It just wasn't happening.  I woke up Wednesday with the determination in mind that she had one more day to get it together, and then I was going to haul her back to the doctor and plop her on the exam table, not leaving until we found something.  I knew in my Mommy Gut that something was wrong with my baby girl.  Never underestimate the power of Mommy Gut.

We dropped Luisa off at school and headed to Caroline's "school" (homeschool co-op).  Ainsley was still really sleepy.  I tried to nurse her, but she was not interested (and she should have been hungry, as I had picked her up from her bassinet that morning and put her straight in her car seat to do the school drop off routine).  I sat her up in my lap to check out what might be wrong, and her body started flexing forward involuntarily.  She would basically fold over in my lap, and then sit up and stare for 10 or so seconds, and then repeat.  This went on for a few minutes.  We were a bit early to her school, so there was no one to ask, "Does this seem normal to you?"  My Mommy Gut was telling me no.  I am not a worrier by nature, so this was a big red flag to me.  I immediately called my sister-in-law, Dr. Michelle (everyone needs a pediatrician in the family).  I called my doctor's nurse.  The consensus was to head to the ER at Children's. The precious mommas of her Classical Conversations group prayed over us.  I left Caroline with them and headed downtown, calling Philip on the way to tell him to meet me there.

I doubted myself the whole way there.  "Maybe it was a bizarre case of the hiccups.  Am I REALLY going to the ER for hiccups?"  The doubt got really bad as I watched them try numerous times to start her IV.  "Am I REALLY putting my precious baby through THIS for nothing?"  But, a bit later, as we were waiting in the ER room for a test result, she started seizing again.  I sent Philip to get the doctor so she could witness it. She said, "I've never seen anything quite like that.  Let's call neuro down here."  Thankfully she had the peace of mind to record the seizure with my phone so neuro could see it once they arrived.  The seizure pattern is quite distinct, so I am fairly certain they knew what the diagnosis would be.  They wanted to let the ER finish their workup (blood work, urine, spinal tap) and then to admit us for an overnight EEG.

She had one more seizure that evening after we got up into a room.  Philip headed home to relieve Mimi and Pop from big-kid duty and stay with Caroline and Luisa overnight, and we got her all hooked up to monitor her brainwave pattern.  She was EXHAUSTED.  Thankfully she rested well that night (even if Mommy didn't).  The next morning neuro came around to confirm their suspicion: Infantile Spasms.

The name sounds quite benign.  In fact, it is very rare form of childhood epilepsy, classified as "catastrophic."

“Infantile spasms is classified as a catastrophic childhood seizure disorder, and it’s not catastrophic because of the way the spasms look. If a child is having infantile spasms, it doesn’t look like such a big thing…just little jerks. It does not look frightening, yet the impact could not be greater. That child with infantile spasms is now threatened with a very poor developmental outcome. Unfortunately, the majority of children are going to eventually be found to be cognitively impaired, and most will continue to have other seizure disorders later on.”

Don Shields, M.D.

Professor Emeritus of Neurology and Pediatrics

David Geffen School of Medicine at UCLA

The problem is not the spasms themselves, but the fact that Infantile Spasms is characterized by hypsarrhythmia (hips-A-'rith-mE-uh), a highly disorganized and chaotic pattern of brain wave abnormality, even when not seizing.  The brain is prevented from developing during this time.

Now, Ainsley has many things working in her favor.

1. I personally know the Great Physician, and we have lots of people calling on Him for her complete healing.
2. We have access to great medical facilities and have a great neuro team at Children's.
3. We have the fabulous Dr. Jessica working on our side.  She has been known to crack many a problem that seemed impossible.
4. Ainsley is in the 30% of children with this disorder classifies as cryptogenic, which simply means that there is no underlying cause for her to have developed Infantile Spasms.  This group has a better chance for a favorable outcome.
5. We caught it as early as physically possible.  I believe what I witnessed Wednesday morning was her first seizure.  Many children's seizures aren't recognized as such because it can sometimes be a subtle movement, and thus treatment can be delayed for months.  This is very critical time lost.

We rounded out our hospital stay with an MRI to rule out a certain cause for IS.  We were discharged last night, and she had three seizures that day as well.  Today we went to see Dr. Jessica for an adjustment and some supplements to add in.  She has had one seizure today.

Next step: We currently have her on a very high dose of steroids.  We have a repeat EEG scheduled for December 3rd.  Pray with us that we see a decrease in the number of seizures as well as a more normal brain wave pattern on that EEG.  Otherwise, we discuss other medication options and try again.  The key here is quick cessation of both spasms and hypsarrhythmia.  We are hopeful that we can get this under control and that she will go on to lead a completely normal life.  Pray with us that it will be so.

{Backblogging} May 2013

May was spent enjoying our summer and getting ready for baby. There were a lot of doctor and dentist visits we crammed in before there was a newborn to care for. I assumed I would go at least until my due date (May 24th), so we had most of the month to prepare. We worked on the nursery, cleaned out closets, and organized as much as possible. We squeezed in a few more PT and speech sessions. Everyone got their teeth cleaned. We were ready to settle in for a month or so of not having too much that must be done.

The girls love swinging on the playset.  One favorite game is for the parent doing the pushing to stop the swing, tell the child to close her eyes, put pixie dust on her head (tickle the top of the head), instruct her to think happy thoughts, and then swing her as HIGH as possible without her looping back over the swing set.

Matt, Amanda, and Huck came up to the lake for Memorial Day.  This was right after my due date, so we knew we would either be able to hang out with them at the lake (which would be fun) or have them come to the hospital to meet the new baby (also fun).  It turned out that we got to have an enjoyable last hoorah at the lake before the big event. 

40 weeks and 1 day

Luisa got to experience her first boat ride, which she LOVED,  She also got to swim in the lake for the first time.  She loves her swim classes at Lakeshore, so I knew she would love that part.

FASTER!!!

"Goat Island"

The boat always puts the babies to sleep

Matt tried to bounce me into labor by hitting every wave head on.  Didn't work.

Swimming with Pop

The month ended by meeting our new baby girl.  More on that next time.