Just had to share. I follow a blog called Mommies of Miracles. They are dedicated to supporting moms/families of special needs children. Every Monday they share a rare disorder and a story of a particular family and how they came to diagnosis along with treatments and therapies that have been helpful.

 I submitted our story of Lily's diagnosis of ESES a few months ago. I had the pleasant surprise of seeing Lily's beaming smile on their Facebook update this afternoon.

 Check out Mommies of Miracles for the whole story!

I pray that this can reach even one other mom who is desperately seeking these exact pieces of information to help her sweet child.

Super Girl

Miss Lily has had an awesome couple of weeks! She is doing phenomenal in therapy and in school. This past week she got another tool to help her move along even faster. She got her Super Girl suit :-) Actually it is called a SPIO suit. Spio stands for Stabilizing Pressure Input Orthosis. For those of you ladies who have had the opportunity to wear Spanks you will know exactly what this suit is like. Also very similar to the compression suits that runners wear. Basically Lily has very long, stretched out muscles, tendons, and ligaments. When she first came to us she also had very low tone, no actual muscle at all. While she has developed an incredible amount of muscle in the past two years she still has a very difficult time managing that muscle. This suit gives her the deep pressure input she needs for her brain to get the messages on how to move her body effectively. It also provides support for that movement without weakening the existing muscles and helps shorten and tighten the muscles she does have. She will be wearing this suit all day, every day. It is breathable and dry wicking just like the fancy athletic wear so she won't roast in it. Right now she tolerates it for 1/2 to 3/4 of the day and it is very easy to see the improvement in her movements, posture, and motor control.

Workout!

I don't think I need to add anything, the video says it all:-) Go, Lily, go!!

Miss Lily

Just thought I would post a quick update on Miss Lily. Biggest news around here is that she got her PICC line removed on Thursday after 5 very long weeks!!! All three of us were quite happy to have that ordeal over with. Her finger is looking good so far so we are hopeful that the infection has been eliminated.
As you can see from the picture Lily is rapidly losing her "baby" look:-) She is rapidly losing the baby attitude as well and is adopting some new sassy, independent opinions:-/ The PICC line pushed her patience level off the cliff. By the last week she was consistently trying to bite my arm when it was time for me to administer her IV. We had several conversations about that which usually ended with her growling at me:-)
We go next week for a follow up with ortho to find out if Lily is going to need surgery on her hips. We are hoping and praying for either another "let's wait a little longer" or an even better "she looks great, we don't need to do surgery". Lily has been on her feet a lot since the last check up and we are hoping that her hips are correcting with the weight bearing, that is the doctors hope too.
We will let you know what we find out! Pray for Lily and the doctor that the decision is clear and obvious!

Jennifer

Walk by Faith

"Now faith is being sure of that what we hope for and certain of what we do not see. This is what the ancients were commended for." Hebrews 11:1,2

"We live by faith, not by sight." 2 Corinthians 5:7

By faith we have believed that one day Lily would walk. To be on the very edge of seeing the past unknowable is humbling beyond belief. We serve an awesome and mighty God. He has done and is doing this work in her life. All the glory goes to God.

Thank you, God, for letting us have a part in this amazing journey.

Frogger in Motion

I think the video says it all. From never even thinking to venture off of her play mat to long distance travel in a matter of days. Obviously you can see what motivates her - she realized she can take herself to where the food is served, whenever she wants. I am dreading the day she figures out where the pantry is!
As you can see the PICC line is not hindering her at all.

Adventures in Hospital Land

In the past 6 weeks we have gone through 3 rounds of antibiotics, taken one ride in the ambulance, spent two nights in the hospital, and learned how to administer IV drugs though a picc line. All for one swollen finger, one seizure, and one violent bout of the stomach flu.

So Lily developed some weird infection in her finger (probably from her own mouth). 3 rounds of antibiotic later and nothing is working. Infection spread to the bone. We just got home today from 2 nights in the hospital trying to figure out what to do. Ended up with a PICC Line, which is basically an IV catheter that stays in all the time and it runs directly to the heart.

Its sounds, icky, freaky, and super serious, and I guess it is, but Lily can do all of her normal daily activities. It allows us to give her IV antibiotics at home and she doesn't have to get stuck with a needle over and over again. And a way better option than having to stay in the hospital for 4 weeks which would have been the alternative. Yes, the picc line is in for 4 weeks. Three, one hour treatments per day.

In between rounds of antibiotics for the finger Lily had another seizure that sent us to the hospital by ambulance. On the way to the hospital we discovered the trigger for her seizure when she projectile vomited at her favorite EMT. Yes, the stomach flu can trigger seizures. After she threw up she spiked a 104 degree temp. In children like Lily who have seizure disorders their systems are very sensitive. Viruses like colds and flu can easily send them into a seizure. Again, this sounds serious but it is really very common for kids like Lily. She just presents her symptoms backwards. Most kids spike a fever and the rest follows. Lily seizes and then reveals the fever/cold/flu. These are considered febrile (fever induced) seizures and are unrelated to her sleep seizures.

I am pretty sure I have left out a ton of stuff about the last 6 weeks, but my brain is complete and utter mush right now. Anyway, Lily is doing awesome considering all the chaos. She is one amazing little girl.

A Mighty Power!

How many times can one kid blast off into the outer space of accomplishments?! I asked Mike if it was my imagination, yesterday morning, or were Lily's pants all getting too short again?
Well she had a follow up appointment at Children's and guess what? The child has grown 2" in the last 6 weeks or so since she was last measured! She has leaped into the 41st percentile for height. Pretty amazing considering that when she came home with us 2 1/2 years ago she wasn't even on the charts:-)
She hasn't been able to keep up in the weight department. Due to the new height it has now dropped her to below the 1st percentile for weight. If she repeats her typical pattern she will now spend the next several weeks adding some weight. She actually broke the 25 lb. mark which was a huge milestone, but she had a tummy ache over the weekend and dropped back down to 24 lb.
She is using her light weight to her advantage, however, and is taking flight in therapy! Today she decided it was time to do laps. She refused to sit down, she only wanted to stand, and then she wanted to walk. With one therapist holding her hands and one holding her hips for stability she then proceeded to march around the 8x10 carpet, not once, not twice, but 4 times!! We were all amazed, to say the least. I think her therapists are having to re-write all of her goals this afternoon because she just passed and surpassed a whole bunch of them.
Strong and determined are much to mild to describe this girl. Try charging warhorse, locomotive, launching space shuttle. Watch out world, Lily-an is coming!!

Treasure

Well I made it official this week. While I am not closing the door of the Purple Pincushion entirely, I am wholly and completely committed to a full time position outside of the shop. The retirement benefits were too good to pass up. My position is fully vested in the Matthew 6:19 plan.

"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also."

I am now a 100% full time MOM! Mike's business is really taking off and I feel like I can set aside my business at this point and focus on the much more important work at hand, helping Lily grow healthy and strong, loving and thanking God all the way. It is a weird transition for me. I have poured my heart and soul into my business for the last 10 years so that I would be able to do exactly what I am doing now, so that I wouldn't be under someone else's thumb. Now if I can just get out from under my own thumb.....Lol!

Wish me the wisdom and grace to be the mother and teacher that Lily needs me to be.

New Year, New Lily

Looks like 2012 has a lot in store for our little girl. For those of you who have not seen Lily since she started her anti-seizure medication in August, I cannot even begin to describe the incredible changes that have been taking place.
I can't even count the number of times, before medication, that I described Lily as strong, determined, and motivated. I never thought I would see that drive and determination increase even more. The girl has become a high speed freight train of accomplishment, focus, and yet more determination.
Today at lunch was the perfect example. One of the major goals Lily has had in therapy since day one has been hand to hand transfer of objects. This shows that the right and left sides of the brain are communicating with one another. This is a goal typically achieved somewhere in the 6-12 month age range. We have worked on this with Lily to no avail these past two years.
So what does she do today, completely unassisted and unprompted? Not only does she complete a precise hand to hand transfer once, not twice, but three times! All while making the additional accomplishment of taking the cracker (object she was transferring) directly to her mouth to take a bite out of it. Another area we have been working on with her, being able to feed herself.
God willing, may 2012 be a year of amazing firsts for Lily!

Christmas Tree

Here is our Charlie Brown Christmas tree! Living in a 950 square foot apartment doesn't leave a lot of room for a big tree. I guess we could look for a really, really skinny, tall tree because we have 9 foot ceilings, but oh well:-) This is actually the first Christmas tree we have had in the apartment since we moved in here 6/7 years ago! We have always spent the holidays with family so it never made sense to put up a tree that we weren't even going to be home to see. Even with a small tree floor space is at a premium so the tree found a home on top of Oscar's kennel.
Can you make out our little angel on top of the tree? Lily's pre-school class made an ornament with each child's picture in the center. She's a perfect tree topper:-)

Christmas Elf

So our little elf is hard at work making sure everything is just so:-) It is so amazing to see how far she has come since last Christmas when she was still struggling to hold up her own head.
Thank you God!

Defiant of All Limitations

So...... We got the results from Lily's latest EEG. The neurologist was very happy with the readings he was able to obtain. He was not, however, able to put Lily neatly into a diagnostic box. Hmmmm.....big surprise!!

Her EEG is showing that she is still having fairly significant electrical activity while she is sleeping even while on medication (we half expected this). What he was surprised to note was that pattern of electrical activity was very close to ESES (Electrical Status Epilepticus of Sleep) it is not exactly that. ESES is what his original suspicion was. But apparently Lily doesn't want follow any particular known or understood pattern. From what I understand, at this point, there is no name for what she has it is just a very, very close relative of ESES.

What next? The doctor is going to go ahead and treat this the same way he would if it was actually ESES. We have been seeing significant improvements in her overall development since she started the seizure meds. and that is an indication that they are doing something. She was on the very lowest possible dose of Keppra so we will gradually be increasing it to see if we can bring those electrical impulses under control. The doctor is going to be comparing her original EEGs with this new one to see what the actual, measurable change has been with the change in dosages.

Apparently one of Lily's God given purposes in this life is to confound, aggravate, irritate, and leave the medical community scratching their heads. And she is so sweet and adorable she actually forces them to put aside their institutionally acquired apathy and do something for her!! In this day in age that is an incredibly powerful gift!

That's where things stand for now. We see her regular doctor on Friday for a check up. We are very anxious to see his reaction to all of the changes she has undergone since he last saw her in action. She slept through her entire appointment with him the last time we saw him - LOL!

More Lily

God is Amazing

The pictures speak for themselves.

Light Out of Darkness and other Minor Miracles

So.......Lily and I have had one heck of a year between the two of us, medically speaking. I have said it before and I will say it again, I can not wait for this year to be over!!! However, we do have tons of things to be thankful for. Like no cancer - that's a biggie! Getting to see some of our China family this summer - amazing time! Mike starting his business - scary but good! Lily having 2 seizures - yes you read right - thank you God for the seizures!!!

Now before I explain why Lily's seizures are a good thing I would very forcefully like to drive home this core of my belief, not because I want to proselytize or evangelize, but because it is the only way I survived this summer. I clung to these words because they were the only hope I had.

Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

It doesn't say that God works some things for the good of those who love him, it says ALL. That means that absolutely everything that happens to me (or all things) God is working for the good. Even the things that I think are bad and horrible.

2 Samuel 22:31
As for God, his way perfect; the word of the Lord is flawless.

So here is how God worked Lily's seizures for good - this is long so get comfortable.

A few weeks back we conferred with Lily's pediatrician and we all agreed to seek a second opinion in the neurology department regarding Lily's seizures. The original neurologist, upon a 2nd abnormal EEG reading, simply said "Well her readings are abnormal, increase her meds, see you in 9 months." No explanation what so ever as to the what or why of her abnormal readings.
So we met the new doctor on Monday. Dr. Hsu happens to be the sweetest, most humble, and excellent doctor I have had the opportunity to deal with. He spent over an hour with us going over Lily's records and history and was very helpful and patient answering all of our questions. He had an immediate suspicion just from her initial EEG of what her condition is. We have another EEG scheduled for next week and hopefully we will be able to confirm his diagnosis. He believes she has a very rare type of epilepsy found in fewer that .5% of all epilepsy patients. It is called ESES or Electrical Status Epilepticus of Sleep - yeah, it's a mouthful.
This type of epilepsy does not present with visible seizures. It is an electrical malfunction only and does not include motor malfunction which is what you see with the twitching or flailing in a typical seizure. It is basically a hidden epilepsy that occurs as an electrical disruption during sleep. No outward signs what so ever. Instead of Lily's brain quieting down and going into a normal sleep pattern she instead experiences increased repetitious brain activity. From what I understand she never gets REM sleep. If left untreated this causes extreme developmental, cognitive, speech, and motor delays and eventually permanent impairment, all basically from severe sleep deprivation. This will also cause difficulty with growth.
If Lily hadn't had the two regular seizures this summer (which are entirely unrelated) we NEVER would have found this. We would have had no reason in the world to suspect something like this and no doctor would have recommended having and EEG without those 2 seizures. Thank you God for lighting our way!!
This type of epilepsy normally shows up in children between 3-5 years of age and presents itself as a sudden regression in abilities. The child will develop normally all along and suddenly they start losing speech, fine and gross motor skills, etc. Many of these kids are misdiagnosed as autistic or pervasive development delay (PDD or failure to thrive). Lily had them both as possible diagnosis. The epilepsy is not discovered in many of these children until too late when the damage has become mostly permanent. Once a diagnosis is made there is treatment but it seems to be a very difficult thing to get under control, no one drug or combination of drugs works all the time in every kid.
Dr. Hsu is very hopeful for Lily, however. We have no way of pinpointing when she began having these seizures, but we have seen nothing but forward progress from her in the two years she has been with us. Normally these kids go backwards pretty dramatically. Since she has been on the anti-seizure meds her progress has even accelerated if you can believe that!! She is starting to put on pounds, not just ounces, and her enthusiasm and drive are out of this world. Her motor skills are coming together all around and she is making more noise and meaningful vocalization every day. Dr. Hsu is hopeful that her current med is doing the trick and keeping these abnormal brain spikes at bay. The EEG next week will show how well it is working.
If we can maintain control over these episodes there is a very high likelihood that Lily will regain all of the ground she has lost and move on the catch her peers. This type of epilepsy normally disappears when a child reaches adolescents.

So now you know the scoop. We are thankful to God for everything he has done in our lives whether we have understood what he is doing or not. At times it is very difficult to hang on to any shred of faith but hang on we must. Then along come days like this when we want to sing from the mountain tops our praises to our faithful God.

2 Samuel 22:29
You are my lamp, O Lord; the Lord turns my darkness into light.

Busybody

This may seem like a boring video of a blabbing child but you will understand the significance when I have a chance to explain all of the updates I have on Lily. Trust me when I say that it will take me a while to write them all down. In the mean time, until I get a chance to do that, enjoy watching Lily be Lily:-)

More to Come

So I realized that it has been a while since many of you have seen an recent, updated picture of Lily so here you go:-) This was a couple of weeks ago. Commanding attention at the dinner table - no one has to teach this girl leaderships skills - lol!
I do have a ton of updates on Miss Lily but at the moment I am spent so they will have to wait for another day. Just know that we are all doing very, very well.

2 Years

There are no words to describe how this day makes me feel. Two years ago today, on the other side of the earth, we were handed a delicate, scared, fragile stranger. Today we have, while still delicate in build, a strong, fierce, determined powerhouse of joy and love. To witness the unfolding of such a beautiful flower is truly amazing.

Everyone loves a Parade!

Lily got to spend last weekend getting lots of Grandpa time in. Mike's dad came down to visit for a few days. It was the weekend of our city's fall festival and the parade goes right past the front of our building, we couldn't miss it if we wanted to! Lily was pretty oblivious to all the goings on when we went last year, but this year was a different story! The marching bands were like Christmas in October! This girl sure loves her music:-) And her Grandpa, of course!