Another trip in the books

Katie and Mags

Maggie and I made another successful trip up to Connecticut. This time it was just the two of us.  What a tremendous little traveler she is.  We stayed with some friends in Pennsylvania on the way there and back.  So much fun to be able to hang with the Smith's in the middle of our journey.  The girls love to love on my little girl!

We also swung by and saw Cousins Amelia and Quin.  Maggie was all chuckles for Quin for a while.  Amelia was trying to not take it personally.  We all couldn't help but laugh when Quin was able to get her smiling up a storm.  As always, it was great to see them.  Maggie adores both of them, and I think the street runs both ways on that one.  Aunt Rachael always enjoys the time too!

While at Center of IMT, we really got to some big projects and what I would say is the meat of a lot of it.  The majority of the time was spent treating her noggin in some form or fashion.  They worked on balancing her neurotransmitters (which GABA specifically relates to her new med as well).  Some intercranial work was done through her mouth.  Lots of time was spent at the occiput and occipital lobe, releasing some of the pressure and tension surrounding this region.  They also worked to increase her bloodflow (both into and out of her cranium).  Lots of big projects that are quite significant.  Over the next couple of weeks we anticipate continuing to notice changes as her body works to assimilate everything.  Work was done to allow more lengthening for her spine, and I'm pretty sure she grew an inch of two overnight (maybe not that much, but she did get a little longer!)

Thanks Mom for putting coconut oil in my hair!

Sporting the spiky hair

Unfortunately we are still seeing the spasms and waiting for that to get all regulated.  There is a tricky balance with meds and therapy and how everything works together.  Too much medicine makes systems very sluggish, but not enough is not good with uncontrolled seizures.  There is no doubt in my mind that therapy has helped tremendously in the overall seizure picture, allowing for less med dependency.  But these new spasms we don't quite have a handle on yet. We did start the new medicine, and are just now up to the full dose.  We should know within the next couple of weeks if this med is going to be effective or not.

Chillin at the hotel one night!

For now, we'll keep on keeping on.  It's great to be back home with Daddy and those crazy doggies!





P.S. It's a little bit shorter post since it's time for this momma to get some rest!

Holding our own

I'll try to make this quick, as I have a lot to do still tonight. 
My response this week for "how's Maggie?" is "we're holding our own".
We started the new medicine last Friday.  It broke our hearts to see little peanut conked out all through the weekend and a good share of the week.  And, to my surprise, that brought us back to feeding issues.  She wasn't too interested in eating...just sleeping.  She's progressively doing better with eating again.  Finally, by Friday, she regained a little bit of her spunk.  But, then Friday evening we had to up the evening dose again.  Then next week we will up the morning dose too.  Hopefully, in a month we won't be seeing the spasms AND her body will have regulated the medicine a bit to allow her to be her spunky little self.  As for the spasms, they appear to have decreased in intensity some, but seem to be a little more random.  Before, they were always when she woke up.  Now they slip in at other times sporadically.  Don't know what that's all about, but oh well. A game of wait and see.

Follow me on this one.  Some of our dear friends here mentioned they had friends in Florida with Hyperbaric Oxygen Chambers.  I began researching this a little more the other night.  I came across a few that I liked and looked all over their websites.  One in particular sparked my interest as it can be scheduled in cooperation with this TheraSuit Therapy (something else I've been looking into...wouldn't be until she's 2 1/2).  At any rate, I asked Shelley for more info about her friends, and guess what??  They are the people I was already skimming the website of.   Coincidence...I think not!

When we left CT last month, they felt it important that we get back up sooner rather than later.  They were really starting to get into more the core of some of what we are dealing with.  Due to trying to figure the spasms out, we just finally got everything confirmed at the end of this week, and Mags and I are leaving after church tomorrow to make our trek up to Connecticut.  Fortunately, we will be stopping at our sweet friends' place in Pennsylvania.  We are also planning to go see Cousins Amelia and Quin for just a bit when we get to CT on Monday.  Maybe an IKEA too!  Then she has therapy Tuesday, Wednesday, Thursday, and 1/2 day Friday.  We will head for home after that.  Each trip we have made, I've known that the next one is covered financially as well.  This trip brings us close to the end of our current resources.  Knowing that, I've tried not to allow fear to creep in.  Instead, I am confident that God will provide exactly what we need at exactly the right time.  Interestingly enough, we received a couple of donations out of the blue this week that are big helps towards what's ahead.

My goal right now is to get this trip under our belt, and then when we return it will be back to the drawing board to reassess where we are with everything.  If there are other things we should be exploring, etc. If anyone has any great fundraising ideas, please let me know. We've tossed around ideas like spaghetti dinner with silent auction -here and/or maybe while in Iowa in May, having runners collect sponsorships for Miles4Maggie and participate in any local run.  Can't really do another gift wrapping in April, unless some people have lots and lots of birthdays to prep for :) My mom and sister are prepping for a benefit ride for Mags at the end of April.  Hopefully we'll get to go too and it will bring in some funds.  Anyway...enough about that, we'll be fine!

I really need to get packing so we are ready to roll out in the morning!
By the way...Little Miss was 10 months old yesterday.  Crazy that my baby doll is getting so big!

Holding our heads up

I had my day of grieving and now it's time to look up and keep moving forward.  After talking with the neurologist, I'm not quite as discouraged.  It's still not good, but it's not necessarily worse.  It's just a different manifestation.  Though Infantile Spasms are a specific diagnosis, that diagnosis doesn't necessarily encompass all of what's going on.  Basically, there is this sub-clinical seizure activity, and when we see the jerks, that is an electrical storm going on.  The priority is that we do need to get them stopped as soon as possible.  So, we've got 24 hours to decide.  The answer to prayer is that the hormone therapy is NOT what the doctor recommended as the first avenue.  His recommendation is Vigabratin, which is an anti-convulsant.  A new one for her.  The major side effect is that it can cause peripheral vision loss.  It's a fairly high rate too, 1 in 3 patients taking this drug.  But it's a little lower in babies, and the duration of treatment is a component.  Our neurologist says that the spasms are a transient thing and he doesn't expect her to be on the medicine for more than a year.  From there we will have to continue to assess additional seizure activity.  Uncontrolled seizure activity that could strong cause intellectual impairment or peripheral vision loss from the drug.  I guess we'll take the possibility of tunnel vision.
Once again, Satan had a way of paralyzing us in the fears of "what if".  So many people say "I don't know how you do it."  "Wow, you're so strong."  I'd like to think so too, but really it's true for everyone.  In everything, we have to make the decision whether or not we are going to submit to the Lord.  Once we do, then we just have to follow.  Unfortunately, it's not a one time decision, but a constant reliance.  But there is so much freedom once we realize we really don't have control.
Today was a good day.  Maggie is still getting stronger and stronger, and smiley.  We had a good day at therapy and a fairly uneventful day.  And, I have really been praying about and thinking through how I could serve at church.  This past Sunday was an Impact Team meeting to talk about service opportunities.  My trouble is that I can't really commit (granted any day we could be out of town or stuck in the hospital, etc.).  What's the point of service without commitment, right?  The other issue is that I've always got my little sidekick attached to my hip.  Taking meals to shut-ins after the Wednesday meal was a desire of the fellowship team.  And I instantly knew that was a perfect fit for us.  Tonight I was able to implement it and loved it.  Maggie stayed home with Daddy tonight, but I'm so excited about our service opportunity.  It's a great gesture, but I did clarify that I will bring it when we can, but not to wait around for us.  Hopefully sweet little bug will be able to bring some joy to those that can't get out and about.  And, Maggie's always open for a little extra loving on.  Plus, it's great for us to get over ourselves a little bit here and there to encourage others.  I was beaming driving around tonight.  It continues to amaze me how much we are wired for service, not just for others, but for our own sake too.  If you are miserable and think others need to serve you, think again.  You'll be surprised what serving others can do for you!
And, to end our evening, Shawn's buddy just invited us to join their family in Savannah for the weekend.  The place to stay is provided.  A little flabbergasted, we thought why not.  We're thinking it'll be a great get-away for all of us given our paths have been going in opposite directions lately.

Dark and dreary day (again)

I got the phone call we had been waiting for. I'm not really sure what good news would have been, but the nurse confirmed what I had become pretty confident of. The episodes are Infantile Spasms. The chaotic brainwaves confirmed what I knew in my heart, but somehow hearing the diagnosis makes it a little more of a reality. Sad and disappointed, I sit and snuggle my sweet little baby doll.
But we're making good progress. This isn't fair.
Everything I read has such disturbing news. "Little Spasms: Big consequences", "severe and catastrophic", "high risk of mental retardation" (I'll go off on a tangent on this one at some point), "difficult to control and even death". All of these make me ill. However, I did come to the realization and told Shawn the other day that we have already been and are in the catastrophic department. I've expected some bumps along the road, but not a whole other beast to deal with. We've been doing so good and making so much progress that I wasn't anticipating a swing back in this direction so far. But here we are at the bottom again.
The nurse let me know that our neurologist will be calling us tomorrow to discuss medication. That has me all disturbed too, because the 2 main options could wreck havoc on all her other systems, and I already know that they usually don't take the whole body into consideration. But, the only goal with Infantile Spasms is 100% seizure control.. One of the treatments is a hormone therapy. That makes the hair on the back of my neck stand up. I guess I won't buy worry until it comes. Who knows what the doctor's recommendation will be.
Sure enough as I was reading, it says IS occurs in anywhere from 1 in 2,000 to 4,000 babies, with it being more prevalent in boys that girls. Yep, that's our rare little lady for you! All I know is once she kicks this all, she'll beat the crap out of any boy that tries to mess with her. She is so strong and one tough little cookie!

"Though sorrow may last for the night, JOY comes in the morning. " We're waiting for that!

Patience is a virtue?!?!

Patience...waiting...and waiting... and waiting.

Pleasant moment singing with Daddy!

We had the EEG done at East Tennessee Children's on Thursday morning. We had never had to prepare for an EEG with sleep deprivation before. I figured it could just be because she is getting older now. Or it could be that the majority of her other times in the helmet have been the result of going to the ER. At any rate keeping Maggie sleep deprived was not fun for anyone involved. Wednesday night she got furious with me to the point of nearly gagging herself. Then in the morning, she was good for the first 1 1/2 hours. She did get to eat the first hour she was up and we just snuggled a while. Then it got ugly for a bit. Finally we woke Daddy up ( or the screaming from the monster did) so I could get ready. I threatened him with his life if he let her fall asleep, after all the effort I had already put into this endeavor. Within just a couple of minutes he walks in, with her almost asleep, "are you sure we can't just let her sleep a little bit?" Daddy didn't want to have to be the bad guy, so I took her and started bouncing, singing, dancing obnoxiously through the house. He got the picture and took back over. The dogs thought we were crazy! Next thing I know she's quieted down just kind of zoning. Her eyes were open though, so even if she was sleeping with them open, we considered her awake. After that little bit, she lay cooing on the floor with Daddy. We found every noise making toy we could!
Nana picked us up and the real adventure began. Maggie again cycled through the escalating frustration, ticked at mom/hate the world, silent zone, pleasant. Each time she cycled through these, the pleasant phase got shorter and shorter. And all the tricks were less and less effective. The ice pack and flicking the feet seemed to agitate her the most. However, I didn't see her eyes open for the majority of the 1 1/2 hour trip. Just fussing!

One seriously tired little girl!  Are we there yet?!?!

Time actually seemed to go by decently fast as I was working hard the whole time. That meant I was just as exhausted as little miss by the time we got there. When we were checking in, I saw the order from our doctor that just said "capture the episodes".  It didn't say anything about sleep deprived!  Knowing she does it every time she wakes up, I don't think we needed to do the deprivation at all. But, if they were doing it, I'm sure they wanted to be sure to get the worst, as lack of sleep and stress aggravate seizure activity. Oh well, we did what we were told. So the tech (we had him before when she was first diagnosed) got her all hooked up. By the time he got all things set, she was out! An opportune time for seizures to occur is just as they are going to sleep, so usually a study is about 30 minutes, the last 5 awake. Knowing her episodes are upon waking, we woke her a little earlier. Since the episode doesn't start until a couple of minutes after stirring, I am always hopeful she may not do it, but sure enough, they started. The tech could barely keep up documenting the clinical aspect. This was one time we were glad they showed up. An epileptic will show abnormal discharges regardless, but the goal is always to capture an episode on the EEG to provide more specific details, particularly with the different episodes.  So we finished that all up and were off to Piotr's office for therapy. I kept anticipating getting an emergency phone call telling me we had to get back to the hospital immediately, but that call never came. Nor has any other phone call...

Still so tired!

Little Miss Serious

The neurologist at East Tennessee had to review the study and then fax a copy to our neurologist at Vanderbilt. They were also sending the disk to him. Lovely that we got caught up in the weekend with it too. If I had known there would be so much delay, driving the 4 hours to Vanderbilt would have not been a problem at all.
On Friday night I also began to get paranoid that her breathing was being compromised. It's so hard. If we go to the hospital, Maggie's condition has to ability to freak everyone out very quickly and create a bunch of unneeded hype. But, by the time a breathing situation gets serious, it's usually SERIOUS! So we waited and prayed for stability.  It may just be congestion, but who knows.  Thank goodness there are a couple of nurses at church for me to bounce questions off of.
As of this afternoon when I called Vanderbilt, the nurse had said they did receive the report, but not the disk yet.  They were getting it to our doctor to look over and then he will be getting in touch with us.  I hate the fact that the nurse probably knew something, but couldn't say one way or the other, so we just wait, and wait, and wait.
Interestingly enough, when I pulled up the Bible app yesterday, this was the verse of the day glaring in my face, "⁸ But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. ⁹ The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance."  2 Peter 3:8-9

Ok, ok...I guess this isn't really that long to wait.

A couple of other side notes.  When we got to the hospital on Thursday morning, I noticed this rash on Maggie's forehead.  What could it be?  I immediately started to analyze..excessive blood vessels?? why?? all the crying?? any other changes to diet?? environment?? Liver detoxing??  It even got a little worse after the study, so I took a picture of it to send to the doctor if we needed to.  I wasn't freaking out, just processing and assessing internally.  Well, as we were having our lunch, Nana pondered the scratches and wondered if they could be from my zipper or necklace.  Duh...Of course it was the necklace.  Not everything is worth over-analyzing little Momma!  It was a good reminder that every so often I get to deal with normal Mommy things too.
And, remember the whole pee ordeal.  Well, I guess something was wrong with it.  They called Shawn, so I don't really know all the details.  He said contaminated or something.  So, they sent us another kit and the pediatric urine collection bags, so tonight/morning I get to attempt this whole pee pee endeavor again.
And then we will wait...