Rattins living Coram Deo

It's been interesting living through one of the worst ice storms to hit New England. Living in my oblivious world with no TV and tuning to the all-Christmas radio station on my commute, I was totally unaware of what was happening when our power went out Thursday night. Gracie slept perhaps a total of 2 hours all night and when she was finally sleeping, I kept waking up to bangs and crashes, not realizing what was waking me up. The next morning, power was still off, but I thought nothing of it, until I walked out of the apartment to total chaos. Huge trees were uprooted and debranched unto sidewalks, roads, cars. Power lines were laying in the roads. Ice coated everything. I made it to work without any problems, and, as my clinic is further south, there was much less ice to deal with there. But that night, I returned home to a completely dark New Hampshire. A kind neighbor lent me a flashlight (since candles are less than optimal for digging clean laundry out of a hamper) and I quic...

Our second Gotcha Day with Gracie! (photos: Gracie summer 2006 Gracie Thanksgiving 2008) Two years ago on Thanksgiving, Josh and I were anxiously sitting in our small room in Liberia, feeling no jet-lag, waiting for a knock on our door. We heard some exclaiming in the other part of the Living Water guest house and we knew that our first born daughter was on her way to meet us... "Oh! How cute! She's so beautiful!" The knock came and... for an eternity, the door was stuck, I couldn't open it... then it popped open and there she was... tiny little Gracie in a stranger's arms... She came to us right away, purring like a kitten in our arms... by the time we returned to the USA 3 weeks later, we were closely attached as parents and daughter. She was like an infant at 3 years of age... today she's complex, full of varied emotions, walking with support, sitting up so beautifully, so engaged with life! We are so blessed!

She may be having major side effects to her depakote (dizziness, headaches, stomach aches, insomnia... sigh!) BUT look at this kid sitting up!! Look at her! :-) If you get tired of play the drum... sit on it!

We were discharged yesterday afternoon and we're home. While in the hospital Gracie was refusing all meds, gagging on her food and really not eating well. We got home and she eagerly took all her meds and gobbled down some dinner (which she later spit up)... very interesting! That girl is so complex beneath her non-communicative exterior! She must get more stressed out by being at the hospital than we realize. Granted, the meds might be a different formulation at the hospital and taste different, but we jumped through all kinds of hoops to make them taste different and she was just gagging and refusing left and right! I hadn't seen Ana since Monday and Ana hadn't seen Gracie since Monday. Josh had told me on the phone that Ana was whiny and clingy and insecure and fussing for "Mama" but when I walked in with Gracie, I hardly got a glance, it was "Gaa-cie!!" who got all the attention! It was adorable. They both were kissing each other and talking to ...

They're not sure what was going on with Gracie. She's starting to look better now and has not had any of those episodes while on monitoring, unfortunately. It's not entirely clear what was happening with her eyes, as she did some strange eye movements here that were not seizures. She's starting to look much better, now off the clonazepam, but still not eating well. We hope to go home tomorrow! I must admit that this has caused significant stress for us as Ana has spent the last two nights with Grandma and I haven't seen her since Monday night, Josh and I have seen each other for just a few tired hours a day, mostly focused on Gracie, and everyone's exhausted. We just keep remembering that God is sovereign!

Thank you for all your prayers for Gracie. We are being admitted to Children's - 3 days of 5-6 seizures per day different from her normal seizure, not taking much liquids and no food, and fussiness... She's exhausted and clearly feeling sick (although right now looks a little brighter and starting to drool again because she's gotten lots of IV fluids and ate some crackers and pedialyte). Her chest xray is normal, cell counts are normal, liver and kidneys and sugar are normal, and only thing ever so slightly abnormal are her pancreatic enzymes. The new medicine that she's on (depakote) can cause pancreatitis. We'll recheck her pancreas in the morning. She'll also get put back on the EEG in the morning - fun times with all those leads being put back onto her scalp! Josh gets that duty... ;-) So, long story short, we don't know why she's been having 5-6 strange seizures a day. We shall see! We'll keep you posted. Josh will be spending the night wi...

"Pumpkin photos" are a must in New Hampshire. So here they are, 10 month old Ana and nearly 5 year old Gracie! In the chilly New Hampshire weather with the pumpkins! This is the closest that we get to dressing up this time of year - Auntie Amanda found this shirt last year for Gracie and it still fits - "who needs a costume when you're already a princess?" :) Big sis, Gracie, is always taking care of her baby sister. And little sis, Ana, wants to make Gracie feel better with her kisses like when Gracie gets home from the hospital or is "sick." Look at this "pincer grasp" on a graham cracker! that's improvement!

I'm inspired by my friend, Gina's, blog where she put on little updates of what her kids are up to now. There's only so much one can read about seizures! ;-) Gracie is so tall, approaching 5 years old, wearing 5T (this is the kid who was in 18 month sized clothes at 3 years of age). She's standing with support and sitting much stronger, she's using her left hand in new and better ways and her right hand is opening more and trying to act as a support more. Gracie starts full day preschool in a week! She absolutely LOVES school! Ana is turning 1 in December and already in 12 month clothes. She's walking, running, falling. Says about 10 words and imitates everything. She does all the hand motions to a rhyme we say about monkeys... too bad all the monkeys get eaten by an alligator... hmmm! That's sad! I'll try to post a video of her doing it - it is most adorable! She's imitating Gracie's yelling, but it comes at as a screech. She's pushin...

I'll start with a story of Ana's cuteness. Last night Amy was driving me and Ana home from Boston and Ana was so silent in the back seat that we thought she must have fallen asleep. Suddenly, Amy sneezed twice and from the back seat we hear a little "choooo!" "choooo!" - she was imitating Amy's sneeze - TWICE! ;-) she's so adorable as she imitates everything! Yesterday when Ana got to the hospital to see Gracie she just kept kissing her and kissing her - she definitely misses romping with her big sister! I slept at home last night after 5 nights and days of being awake with Gracie, I had to get some sleep before work today. Ana slept through the night (as far as I know) and greeted me with a cheerful "hi!" when I got her out of the crib this AM. She imediately started looking around for "Dad-deee" and "Dad-douuu" (gracie?) but certainly enjoyed having mama home. Gracie apparently slept through the night at the hospi...

My brain is foggy and I feel as if I could have a seizure at the drop of a hat after 6 days of keeping Gracie awake and inciting seizures. She did have two seizures for us each time after I kept her up for most of the night off her meds. She also got a sedated MRI which took her 16 hours to wake up from! All this gives us some good data for moving forward with more definitively treating her seizures. I'll keep you posted!

Gracie did have a seizure last night. I have never been so happy to see a seizure. I couldn't believe that we got a seizure when we wanted one! She was taken off her meds entirely and I kept her up until midnight reading, watching TV, and tickling. Then, I snuggled her in to bed, but she couldn't fall asleep! Oh my! She struggle to sleep for and hour and a half and then, just after she dozed off on my lap, she had a seizure. I leapt out of bed and joyously pushed the seizure button. Her whole seizure was captured on the EEG and video with full monitoring. Praise God! The odd thing was that, despite ativan to stop her seizure, she didn't fall asleep for over 2 hours after the seizure! She laid there with her eyes wide open, looking around, occasionally yelling out... very strange. But my comfort was that she was on the monitors, so I eventually caught a few hours of sleep. She's now in the recovery room after a sedated MRI which will give us lots of information about wha...

We're admitted to Children's Hospital (Boston). Gracie was so incredibly brave about 3 IV attempts, blood draw, and electrode placement on her exquisitely sensitive scalp. She has, of course, won everyone over and has many new friends. I left the room for a few minutes this morning and came back to a crowd in and around her room all laughing with her contagious laugh! The joy of the Lord shines through that child! :) Now, we are praying for a good seizure, or more, if necessary! We really want to capture a seizure on the EEG, really really! We may also be able to get the sedated MRI done while here, which would be fantastic!

Well, friends... the sleep study ending up to be more of an adventure than bargained for... and not of Gracie's doing! I was to meet them at the hospital since I was at a conference in Boston. So, I walked over to the hospital from Hynes Convention Center and arrived with plenty of time (5:30pm) ... to get phone calls from Josh... "I'm stuck in traffic (5:30pm)..." ... "I'm still stuck in Red Sox game traffic (6:00pm)..." ... "Okay, I got off 93 and I made it onto Storrow Drive..." ... "Umm... I don't really know where I'm going, I must have missed something... it looks like I'm headed out of Boston now (6:15pm) ..." ... "Someone ran me off the road and I blew a tire and bent the rim and I can't drive the car anymore... and I don't know where I am (6:30pm)..." WHAT?! umm... (appointment is at 7:30pm) So, I loaded myself back up with the breastpump (I had been out all day), my backpack with my laptop in i...

Gracie has a sleep study tomorrow - that should be interesting seeing as she doesn't really sleep well lately (most likely due to mega doses of meds)! But I'm eager to get the results and see what's going on at night and this is the next step to getting an MRI which is A step toward possible epilepsy surgery which I'm now actually HOPING that she'll qualify for. The thought of neurosurgery (even for a doctor) is terrifying, but as it could cure her, it would certainly improve her quality of life! She's now up to double the max recommended dose of Keppra and a high dose of lamictal and still had a seizure on Friday. We're starting Vitamin B6 which has some effect for the mood swings that come with keppra and also has some anti-seizure effect. We also put most of her lamictal dose in the morning to help with her insomnia... next week is her long term monitoring video EEG!

Well, just when we were starting to catch our breath and look toward reducing some debt, the transmission went out on the van while Josh was driving it on the turnpike ("the Mass Pike") AFTER he dropped the girls off at his parents. Praise God that Josh did not get into an accident when he could no longer go forward in the car! It's a discouraging blow, but a reminder, once again, to store our hope in things above. Is God unable to care for us in such a little thing as transportation? The Ana loves climbing on Gracie, she picks up Gracie's shirt to tickle her belly, and they can be found giving each other kisses. Gracie loves the attention and Ana is showing her new ways to get into mischief! Ana also enjoys pushing Gracie in her wheelchair which is a nice activity for parents as both kids are occupied and happy in each other's presence! :)

If only we could get sleep... 'yawn!' (of course, rather than sleeping when both girls are asleep, we are frantically trying to actually get work done and here I am blogging!) Ana still gets up 1-2 times per night to nurse. Gracie has been sleeping terribly, culminating with spending 5 hours straight last night whining and not able to sleep. We assume that this is from her lamictal which has a common side effect of poor sleep. But, it could be from any number of things as she can't tell us what's wrong. Does she have pain somewhere? An infection without fever? Even a broken bone? We don't know!! It's so frustrating to have a non-verbal kid just whining, knowing that we could be missing something serious. It's even more frustrating for her, I'm sure, to not have us meet her needs. Needless to say, she gets tylenol sometimes, even if we're not sure that she really needs it, just in case she's whining because of some discomfort. I'm lookin...

With our friend, Rachel, who was the nanny for our kids while we were in sessions in Seattle. In Olympic National Forest! Yes - that's a wild bird on Josh's hand in Olympic National forest - the girls thought this was hilarious! Gracie STANDING on the ferrie into Seattle! Look at that girl! First day of school, wearing a new dress that Auntie Amy brought from Hawaii! (Gracie is leaning against the railing on our patio.)

Well, friends, we spent the week in Seattle, WA at Candidate School for Action International Ministries (ACTION) - where to begin?! First of all, we were immensely blessed to have a friend, Rachel Harrison, use a week of her vacation time to come with us to Seattle to nanny our kids while we were in the all-day sessions. Rachel has a heart for supporting missionaries and this was, essentially, part of calling. The girls love her and she managed a Gracie seizure and two active kids all week without missing a step or getting flustered! Secondly, we have grown to appreciate ACTION even more after spending an intense week here in interviews and training. Each person has such a heart for God. We were blessed to spend time with the founder, Doug Nichols, the international and USA directors, and amazing people from each department. ACTION is a mid-sized mission with approximately 235 missionaries now. http://www.actionintl.org/ We still do not have a country assignment. We are contacting the ...

We went to Boston today to make a next attempt at getting Gracie's seizures under control. It is such a blessing to have such a marvelous pediatric team right here in Nashua NH but also the experts in Boston so accessible to us (only one hour away)! Our next steps will be: a sleep study to eval for sleep apnea, a sedated MRI to get a better picture of her right sided basal ganglia stroke and right frontal scarred brain, and a phase 1 video monitoring EEG. We're also maxing out her keppra and lamictal dosing (to much higher than she currently is taking). She may be a candidate for surgery to excise the scarred brain tissue which may completely stop her seizures... yikes! We'll cross that bridge when we come to it! This neurologist also recommended getting an apnea monitor, an O2 sat monitor, and a pulse monitor, all with alarms as a step to preventing SUDEP Sudden Unexpected Death in Epileptic Patients ( http://www.epilepsy.com/epilepsy/sudep_intro ) and a step to helping ...

Gracie and Ana have taken to walking around the church together - Ana pushes Gracie's gait trainer as Gracie walks along. Between the two of them, they make a pretty efficient team (except for the steering part!). They love it and could do it for hours! Gracie has made amazing strides (no pun intended) in standing up - we'll get some video up soon of her standing, supporting herself ONLY with her right hand (her otherwise useless hand) - it's amazing! We didn't dream that we'd see her looking this strong and steady. Plus, now she's smiling and her little heart isn't pounding out of her chest with stress at the thought of standing up without human contact - God is SO good! Gracie went to music camp this summer at the Y which was somewhat fun for her, but definitely good to have her around other kids.

When Josh is away, us girls all end up together in bed - Gracie's been sleeping poorly due to medication changes so she needs extra help falling and staying asleep and Ana still (at 8 months) gets up to nurse during the night. My little girls are so adorable snuggled up together! The girls like to be in the middle of the action, so a game of Dutch Blitz sure caught their attention!

Through Partner's in Health (part of the Area Agency - now called Gateways) we received tickets to see the Nashua Pride. Gracie loved cheering, was fascinated by the person walking around in a cow costume, and of course enjoyed being with all of us together! Ana was also interested in the field of play, although she didn't last long into the evening. What fun! On a side note, my little sister (not so little anymore! She's turning 22!!!!!!!) is headed to France in just a few weeks to spend at least a year with A Rocha http://www.arocha.org/int-en/index.html as the executive assistant to the director in France. She's excited about this role but has to raise all her own support so this is still a burden on her as she packs her bags for a year. If you're interested in conservation activities around the world and are interested in supporting her, you can mail in a contribution clearly indicated for Amanda McMillan - France. She also would appreciate your prayers a...

A friend's blog pointed out this article about the undue attention that interracial families receive, focused on the child who is of a different race. We certainly get plenty of this attention, and although it's not an issue yet since our kids are so young, it certainly will become one! http://www.harmony.cc/uploads/pdf/The%20China%20Doll%20Syndrome%20-%20When%20Excessive%20Attention%20Sets%20Children%20Apart.pdf

Well, Gracie's seizures are not well controlled on lamictal. Yesterday evening she had the saddest seizure as she was actually aware that her seizure was coming. After I finished stretching her, she started looking so scared, I thought that maybe I stretched her too aggressively so maybe I had hurt something. She just kept looking more and more scared and starting hugging me tightly. After a minute of this, her right arm started seizing, then her mouth and face, she was still aware and looked terrified as she gradually slipped into a grand mal seizure. Even during the intial parts of the grand mal, her left hand wasn't seizing so she just kept reaching to us. It was so sad! Gave her diazepam and she fell asleep, poor baby! Much better when she isn't even aware that she is having a seizure. But this may shed light on why she's been acting so scared and crying so much at night. Perhaps when she has her night time seizures, she is also aware of those and has been waking up...

Our Ana and her buddy Caleb enjoyed the lake at the baptism on Sunday!

We were in the hospital again - more seizures this time with a fever. Poor Gracie is so miserable sick but nothing serious except that the fevers give her seizures... We are so blessed to have a local hospital (Southern NH Med Ctr) that we trust and receive good care at. Ana was born there, Gracie has been admitted there many times and also visited the ER many times... it's only 15 minutes or less from our house, so we are blessed! Keep praying for Gracie to outgrow her seizures by the time we head for the foreign mission field!

Gracie is 4.5 years old, Ana is 6.5 months, and cousin Samuel is looking forward to his 3rd birthday! Samuel came to visit us in NH and we enjoyed the park!

Ana's unique fascination with her tongue found a match in this young giraffe! Family Portrait with my favorite animals! Yes, this is EXACTLY what it looks like - a slobbery-on-the-mouth-giraffe-kiss! yum!! By the end, Gracie couldn't get enough of these funny creatures! She kept wanting to pet them!

We are headed to Kenya at long last with our small team from our church. Everyone is very excited after 1.5 years of preparation! We are traveling with two amazing teenaged girls, my sister in law, my father in law, and the four of us! Please pray that Gracie would be seizure free and healthy. Please pray that Ana would not get sick at all (including malaria). Please pray for smooth and safe travels. Please pray for wisdom as we lead the team. Please pray for growth and maturation in our relationships with God through this experience. Please check the missions' trip blog at http://faithbaptistmissions.blogspot.com/ - we will keep updates on the trip on the blog as we are able. You can email us at jarattin@yahoo.com during the trip (more accessible there than gmail).