Genetics, Neuro and Seizures, Oh My!

Where to start??  Lots going on.

I have been waiting on a call or email from Peyton's Neurologist (Dr. K) here at MUSC.  The Geneticist  (Dr. T) in Boston had contacted him regarding the results from the lumbar puncture that was done in February.  He had some questions that he wanted input from a neurologist on, so he emailed the doctor here and then Dr. K was to contact me.  Well, I hadn't heard anything, so I made contacted with both doctors.  Dr. T was wanting Dr. K to talk to me so asked that I give him a few more days and if I didn't hear back, let him know.  I didn't, so I did.  Still nothing.  Meanwhile, I don't know what the results were myself!

On Sunday night, Dr. T called me.  Without going into great detail {him with me}, he said that some of her neurotransmitters were low and he wanted Dr. K's input on starting her on some sort of neurotransmitter supplementation.  Who knew there was such a thing??  I still don't know what the end result of that will be.  However, as we talked, it was decided that we really need to bring Peyton back up to Boston Children's Hospital.  There are several specialists that he would like for her to see as well as some tests done {probably including the skin biopsy which, by the sounds of it, should have already been done...but hasn't been}.  She will need to see Dr. T.  He would also like her to see Dr. M, who is the Neurologist Peyton saw when we were in Boston last August.  Additionally, he would like her to see one of two doctors who are experts in both genetics and endocrinology with an interest in skeletal malformations.  He felt like they might be able to offer more insight in terms of treatment.  He also said, ideally, he would like for her to have a hearing test and for her to see an Ophthalmologist who has a special interest in genetics of eye disorders.  That's a lot of specialists!

Here's the thing.  He wants to see her in about a month and a half {if that}.  Definitely before June.  Likely the week of May 6th.  He is having their secretary work on scheduling, so we should know something in the next few days.

Then there's the logistics of it all.  HOW??  Given Peyton's current condition it's going to be a lot harder for her to travel.  Can she travel by car??  Should she travel by air??  How does that get paid for if it's a medical flight??  Is it a charitable cause??  Can we line up her Medicaid here to cover all out-of-state travel costs??  There is a lot of leg work to be done in a very short amount of time.  If she takes a medical flight, chances are only one escort can go.  Well, I cannot handle this trip without Ron being with me.  Yes, I can certainly handle Peyton, but if I expect to eat, or if laundry needs to be done in that week, well, I've got no help!  I'm not saying I need Ron there to be my errand boy!!  Obviously if he is with me, then the burden of caring for Peyton is shared between two people!  If I fly with Peyton, then he's got to drive up, but then he's got to leave before us and then how do I get her and all her stuff to the airport - cause there's going to be a ton of stuff to bring.  Remember last August when we went to Boston and there was so much stuff to bring for her that we couldn't even take our own vehicle??  Yeah, that.  On the other hand, if we drive, then it's obviously a longer and harder trip for Peyton, but at least we're all together.  But she requires oxygen all the time, so when do we do about that?  If we bring oxygen tanks as we've done in the past, we'd need so many because of the rate she's at that there wouldn't even be enough room in our car for all of the tanks, much less everything else we'd have to bring!  I did inquire into a portable oxygen concentrator for traveling.  I need the specific dates of travel ASAP as they only have 3 of these units.  This would replace the need for all those tanks as well as our own larger oxygen concentrator which we'd have to bring for use in the hotels.  She'd need oxygen when out at appointments as well, so we could use it for that too.  Trust me when I say that planning this trip to Boston is more of a logistical nightmare than the last time.  She wasn't on oxygen all the time last time.

So, the Boston trip looks like it will happen - some how, some way.  Please say some prayers that we get everything worked out in the best possible way for Peyton.  Please pray that everything comes together for us to manage this trip.  The Lord knows all our needs for this to happen.

Peyton saw the Endocrinologist {Dr. P} yesterday.  This was the first visit to him since she was hospitalized with the fractures in February.  He would like for her to start on a drug therapy, which would be a monthly IV infusion done in the hospital.  It would be three days in a row once a month.  When he mentioned the drug, Pamidronate, I got a very weird feeling about it as it is one of the drugs my mother received via IV infusion during her cancer treatment.  It took me a moment, but I remembered it was not the chemo drug {and why would they one to Peyton anyway??} but, rather, a drug to help promote bone density.  I wish my mom was here to ask her all about that.  Interesting that Peyton may wind up on the same drug.  We aren't scheduled to start that yet, as the Endocrinologist spoke with Dr. T in Boston yesterday afternoon and there may be some tests and possible other treatment options to try before the Pamidronate.  Dr. P definitely wants for everyone involved to be on the same page before starting anything.  He said it isn't urgent that we get her started on this so if it waits until after our Boston trip, that is ok.

Then we got to today.  Between October 7 - November 5, 2009, Peyton had several "grand mal" type seizures, the first one being over 45 minutes in length {911 was called and she went via ambulance to the hospital}.  Since that time, she has been on seizure meds.  She is currently at the maximum dose of what she is on.  It was recently increased to the current level after we talked to the Neurologist {Dr. K} about her having "focal" seizures.  That is, brief periods where she simply stares off and is unable to focus.  She zones out for 10-30 seconds and then comes back like nothing happened.  Those happen so frequently that we almost don't even notice them.

This morning Ron and I ran a couple errands before I dropped him off at work.  When I got home, Peyton was very irritable.  The nurse described what had happened prior to the irritability.  She said that it seemed like seizure activity, but it was all in her right leg and foot.  When she described what she saw, it hit me that I have seen this exact same thing at least twice in the past 24 hours or so.  She called and was able to speak directly with Dr. K {neuro}.  She described what happened and he agreed that it was likely seizure activity.  She is already on the max dose of seizure meds, so she can't take more.  And he cannot give her another med to take along with this one because it could suppress her respiratory system.  That I know of, this has only happened 3 times in the past 24 hours or so, but it may have happened before that.  But it has only just started happening, so we don't know if this is a temporary thing that will pass quickly or if it's a sign of bigger things to come.  Of course I have emailed Dr. T in Boston to give him this important update to her condition.  I'm sad for her that this is happening.  I have this image in my head of something like what you'd see on a construction site - a sign saying "3 years 4.5 months accident free" {or in this case, seizure free}, erasing the numbers and resetting to 0 days.

So, that is where we are at right now.  I think that's enough.  Don't you??  In case you couldn't guess, we could use prayers in a lot of areas!  We thank you and appreciate your support!

Day 3 Update

I have to say that my admiration for Peyton is at a new high right now.  This poor child has endured more than most and just when you think she's endured enough, she pushes through something else.  Today she had her first ever {and hopefully only} lumbar puncture.  The Neurologist hoped to be able to do this without sedating her.  It was done right in her room.  He and the doctor from the PICU whose service Peyton is on were both in the room as well as a 4th year med student and a nurse.  Once the Neurologist was present, it was non-stop activity for the next 30-40 minutes as Peyton was prepped, trays set up, consents were explained and signed, and so on.  I was also present in the room during the procedure.  They used a numbing cream on the area.  Peyton was turned on her side and tucked into a fetal position.  Now, Peyton likes to lie flat...period.  She does not like to be held down.  It was looking like we might have to reschedule for a date when she could be sedated.  However, they were able to keep her still enough for long enough to get the spinal fluid samples that they needed.  From my view {I was facing Peyton's front side}, I could not see the 3" long needle being placed.  It's not just a long needle, but it's a larger gauge needle.  I think you could drill a hole through the ice frozen over a river with that thing to do some serious fishing.  Ok, it wasn't that big, but it was sizable.  Peyton did get morphine during the procedure.  I do not think she felt much, if anything.  I think her biggest complaint would probably be from being held against her will.  Afterwards, they kept the crib flat rather than have the head raised.  This suited Peyton just fine.  She doesn't like to be on an incline.

She seemed to do well today from a respiratory standpoint.  Well, as good as it gets for her.  I discussed again with the doctor the fact that what we are seeing here is a decline in her overall condition.  She likened it to someone with muscular dystrophy {not what Peyton has}, where over time you see the muscle weakness and eventually internal systems become affected - heart and lungs being the major ones.

There's not a whole lot more going on just now.  We hope to be out by the weekend.  Perhaps we'll be home sometime Friday.  Her g-j tube is due to be changed out next week and we are hoping to have that done before we leave here.  It would save us a trip back next week just for that.

Aside from all of this, the samples from the lumbar puncture will be on their way.  This is part of the studies that Genetics at Children's Hospital Boston needs.  It's not related to this current hospital stay.  I did email Peyton's Geneticist up there to let him know she's in the hospital and that the lp was being done.  I heard back from him.  He let me know that they have begun the gene sequencing with the blood sample of Peyton's that was banked up there when we were there in August.  There appears to be some sort of technical difficulty at the moment, but they hope to have some results within a month.  If you are unfamiliar with genetics testing, just know that tests are not done overnight.  It can take days, weeks, or many months before there are answers.

I just want to thank you all for your incredible support for Peyton.  You have no idea how much it means to us.  Thank you all so much.  Please continue to pray for her as well as for a resolution to whatever technical issues are involved in that genetics testing up in Boston.

I will keep you updated on how things are going here.

Today's Update

There truly isn't a whole lot of "news" on Peyton.  Any lab work that has been done has come back negative.  That's good, but it doesn't explain anything in terms of what is causing Peyton to be sick.  The PICU doctor spoke with her Cardiologist.  She even had an echocardiogram done.  The answers don't lie there either.  In speaking with the Cardiologist, it's just a mystery.  It's good that it's not pulmonary hypertension.  But if it's not that, then what?  If it's not a pneumonia or other respiratory infection, then what?

The only explanation is the one we don't want to know about.  That is to say, that the only likely explanation for what is going on with Peyton is that she is experiencing a deterioration in her overall condition.  I talked to the Pulmonologist about this.   I think that he is in agreement with this assessment.  Over time, things change. It could be gradual or sudden.  He said it's their goal to try to slow this process as much as they can.

What does it mean?

I don't know.  I really don't.

I'm weary, though.  We're being asked questions I don't want to answer, yet have to.  Just in case.  Then there are all of the thoughts that are racing around my brain.  What if?  What then?  When?  What after?

None of this is surprising.  None of this is unexpected.  But none of this is welcome.

I don't have any answers.  As to the "when" - we don't know.  Years?  I would doubt that.  Is anything imminent?  I would seriously doubt that too.  We just need to keep on keeping on and hope and pray for the best.

Now, aside from all of that, I have not heard anything more about the lumbar puncture being done Thursday.  Peyton had a hip x-ray.  The person who came up to the room to do the xray is one of the people who is always in the room when Peyton is having her gj tube exchanged.  This is due to be done next week, so as long as she was in the room, I asked if it might be possible to have this done while she is in the hospital rather than having to come back next week.  It sounds like this should be possible Thursday as well.

For now, Peyton is sleeping.  She'll be interrupted soon enough for her evening respiratory treatments and meds.  But she's sleeping despite a sudden room change.  Apparently doctors don't take too kindly to toilets leaking down the wall into their office on the floor below!

Anyway, I'm about to tune in to our First Wednesday service online.  This is the first time I've missed being at First Wednesday in many, many months.  Kind of bummed about that too.

I'll keep you posted on what's going on here.

Moving Forward

I feel like we are picking up a little momentum where Peyton is concerned right now.  I mentioned yesterday that I had spoken with Dr. T. in Genetics in Boston regarding the latest news on that front.  I tackled 3/4 of the paperwork that needs to be done for the Manton Center - that's the research group in Boston.  The other 1/4 is Peyton's portion.  Turns out the rest of our paperwork was fairly straightforward.  Peyton's, of course, needs the more detailed medical history and requires more effort than I can muster up right now.  I have been sick for the past few days.  A trip to urgent care yesterday and a Z Pak should do the trick.  Then I will finally be able to get this done and on its way up to Boston.  The other 3 packets of information are already en route.

This evening I received a call from Peyton's Neurologist {Dr. K.} here in Charleston.  He was calling to discuss Peyton's case with me in light of his recent conversations with Dr. T. in Boston.  I think that's his new best friend now.  If ever I could be a fly on the wall in the middle of a conversation - it would be the one between the two of them.  I think it would be fascinating.

Dr. K. is aware of the possibility for Peyton to become involved in this on-going research study at NIH in Bethesda, MD.  He seems to be on board with this plan.  Dr. T. asked us to consider it and contact the other Dr. K. at NIH regarding the study if we were interested.  Dr. T. could go either way. Dr. K. here at MUSC actually knows Dr. K. at NIH.  He seemed quite interested in this study to see where it might lead for Peyton.  I think we all agree that it falls into the category of "no stone left unturned" or "nothing ventured, nothing gained".

The next step right now is the lumbar puncture that I had previously mentioned.  Dr. K. at MUSC is going to do that.  He wants us to think about it, but really, it is the next step we need to do.  It's necessary for Dr. T. in Boston to have results of a lumbar puncture to help establish a base line prior to any form of copper supplementation.  The LP is probably going to happen around the second week of January.

While I had him on the phone, I asked Dr. K. about increasing Peyton's Neurontin.  She is on this for pain for her hip and shoulder.  The generic name for Neurontin is Gabapentin.  For whatever reason, every time I open the fridge to get a dose or Peyton, I keep calling it Yo Gabba Gabba-pentin.  If you have a small child, you'll possibly find that mildly amusing.  Gotta do something to keep things interesting, right?  I digress.  Dr. K. is on board with an increase in her dose {it's already 3x/day, but the amount given with each dose will increase}.  We've noticed Peyton's pain level in the past week or two seems to be on the rise and we're having to give her Oxycodone between doses of Neurontin.

There is the possibility that Peyton will need a hip x-ray to check the status of her hip dysplasia.  He suggested a possible sonogram as well.  He also suggested that perhaps botox might be considered, but I don't know what my wrinkles have to do with her hip pain! I kid.  Like I said, I have to do something to keep things interesting.  We'll see how the increased meds help and go from there.

That's about it for now.  I was excited to have another phone call from another doctor this week.  Things are moving forward.

A Very Long Overdue Update

I last updated Peyton's CaringBridge page on November 9th!  In this blog construction phase, I have actually gone ahead and put in the most recent couple updates from CaringBridge into this blog so you can easily refer back to those.  As I said in my welcome post, it's going to be a while before this blog is completely populated with the entire contents of that CaringBridge site.

I mentioned last month that things were fairly frustrating with Peyton.  No.  That's probably not the right word.  More like overwhelming and exhausting.  There's been so much happening.  I'm simply exhausted right now.

Peyton has not really returned back to her base line since she was sick and hospitalized back in September.  Forget the 17 day stay in October.  She's just never fully bounced back since September.  She's not lethargic like she was, but she doesn't have a whole lot of pep.  She is increasingly inactive.  Her hip pain is increasing in the past couple weeks.  It's heartbreaking to see her in so much pain and not be able to do something for it.  She's on meds, but they aren't working as well as they need to be.

Peyton has had the worst diaper rash for quite some time now.  It is an angry red at times.  Bleeding a bit at times.  Very painful to look at, so I can't imagine how it must feel to Peyton herself.  Just when we think it's resolving, it flares up again.  I think her skin is just so ultra sensitive to anything that touches her bottom that it's literally tearing her skin up.

At the end of November {the 26th}, Peyton had another "episode" at home where she decided that breathing wasn't absolutely necessary.  She began to turn grey/blue.  She came around fairly quickly {less than a minute}.  We took her to the ER where they did absolutely nothing but eventually send us home.

Peyton had a Cardiology appointment back on December 7th. I have to say that in Peyton's 6.5 year life, this was the very first appointment of hers that I have missed.  I was sick that morning, but she had to go.  Ron took her - all on his own!  Well, with the home nurse, but he did it!  Everything is pretty much status quo in that department.  She will go back in a couple months.  They will do another echocardiogram to see how the mitral regurgitation and heart murmur are doing.  So far, the idea of doing a heart cath is still just an idea.  No plans for one at this time.

A couple weeks ago, Peyton started to get junkier than usual. I was worried as we were heading into that particular weekend that she was about to have to go to the ER.  I contacted the Pulmonary clinic and we were able to start Peyton on a 2 week course of antibiotics to hopefully stave off any major illness.

I mentioned previously that we had a sudden unexpected issue in our home nursing situation.  That was closing in on a month and a half ago.  In a nutshell, we had to fire our home nurse who was doing 40 of the 56 hours a week that Peyton gets.  I won't go into details here but we went through a challenging phase after that.  Scrambling to get nursing coverage.  Not having enough hours to begin with.  That's another blog post in and of itself.  However, God provides.  I wrote about a little Christmas miracle we received over on my personal blog.  You can read that post HERE.  Long story short - we now have 84 hours a week of home nursing care!  I do, however, encourage you to read that post!

During Peyton's last hospital stay {those 17 days in October}, you may recall that I was in constant contact with her Geneticist up at Children's Hospital Boston.  He has been an amazing asset to Peyton's medical team.  He had multiple conversations with Peyton's physicians while she was in the hospital and he has also been in touch with Peyton's Neurologist here at MUSC lately.  In the past month, he has called me himself to discuss various updates.

While we've been going about our business here, the Dr. T. in Boston has been discussing the case with other doctors up there as well as her Neurologist here.  Here is what we know:

* We still have no diagnosis;
* Because of some very specific tests that have been done in the past couple months, we do know that Peyton is severely copper deficient - as in, almost non-existent;
* Peyton's case is exceedingly rare - so rare that she may be "it";
* There is no protocol for treatment because of the rarity of Peyton's condition;
* You don't just "get" copper supplements.  It's not like grabbing some iron pills from the pharmacy;

All of that said, and leaving a whole lot of detail out, in a nutshell, Peyton is likely going to wind up being a research study in and of herself.  We are filling in paperwork to have our family enrolled with The Manton Center for Orphan Disease Research.  Enrolling in this will enable them to place Peyton into a research program.  There is a specific gene that they need to look at.  I won't get into that now.  We all have to be enrolled because they may require samples from the rest of us {including Moira} at some point.  We've sat on this paperwork but I'm working hard to get it finished ASAP.

Dr. T. has been talking with various specialists, including a doctor with NIH {National Institutes of Health} who is apparently one of the world's experts in copper disorders.  This actually came about this week.  Dr. K. is in agreement with Dr. T. in having Peyton tested for this specific gene.  The issues with copper supplementation are namely that it is impossible to come by in the U.S. right now, and we don't know if it is even going to have an effect.  We have to weigh the potential benefits for Peyton with what we are willing to put her through - to what end.  Dr. K. has a research study that is on-going which involves copper deficiencies.  Not what Peyton has specifically - but there is the potential to receive supplements through this program.  Dr. K. is willing to talk with us and we can learn about this program and see if this is something we want to participate in.  If so, it's going to mean a trip to Bethesda, MD.

All that said, Peyton is going to require extensive testing before anything can be done.  She'll definitely be involved in research through Boston.  Whether or not we go to Bethesda has yet to be determined.  Peyton is going to require bloodwork, a lumbar puncture, and a skin biopsy at the very least.  There are specific enzymes that they need to examine.  Copper deficiency can have an effect on multiple organ systems.  We need to find out which ones and how they are being affected before any sort of therapy can begin.  As for therapeutic copper supplementation, Dr. K. feels that it is less likely to have an effect on Peyton given her age - it may be too late for this.  That said, it's something we should still consider. There are just too many unknowns.  Will it work?  What impact will it have on her?  I think there's a whole post just on describing what copper's effect on the body is.  I'll leave that for another time!

Right now we have a lot to consider.  It's looking like a Boston trip will happen in early Spring, perhaps.  There definitely will be one.  The Geneticist {Dr. T.} would like to see her, as will another doctor up there.  If we do participate in the NIH study, there will be a trip to Bethesda.  That would be so easily combined with a road trip to Boston.  The question is will the timing of things required for Boston and Bethesda line up to make that possible.

Please Lord, allow our vehicle to handle the possible multiple trips.  Allow things to line up so that Moira doesn't have to travel with us {which frees up space in our vehicle but, more importantly, frees her from the stress of having to deal with all of the "Peyton" activity that will go on}.  Most importantly, Lord, grant all of these physicians the exact knowledge and wisdom where Peyton is concerned so that they can do the exact right thing for her.  While you're at it, Lord, grant us as her parents the wisdom to know that the decisions we make on Peyton's behalf are exactly the right ones for her.

An Outpatient Update

I have been meaning to write this post for the past few days or so.  I've been in a "writing funk" and haven't blogged much either.  I'm just not feeling it.  That said, I do need to update you on Peyton's current situation.

Last Tuesday (10/30) Peyton had Cardiology and Pulmonology appointments.  It was a long day but glad we went.  It is so difficult to get Peyton out of the house to go to an appointment.  If you were to tell me right now we had to go somewhere with her, I couldn't be ready to leave for at least 30 minutes.  At least.

Anyway...

Cardiology.  She had her last echocardiogram while she was in the hospital last month, so she didn't need another.  Some of her odd symptoms appeared like they could be cardiac in nature, but after looking at the echo, it's not likely.  For example, the edema (swelling she was having in her face) might be a sign of right ventricular failure, but her echo did NOT show that.  She does not have right ventricular failure.  So that's a good thing.  The measurements they got did show that the left side of her heart is ever so slightly enlarged - like one point outside of the normal range.  Not terrible.  Her mitral regurgitation and heart murmur have been described as moderate.  I don't think those have gotten worse.

We first discussed everything with the fellow. Then he came back in with the regular cardiologist and a 4th year med student.  We talked with them for quite a while.  He definitely seems very concerned about Peyton's overall condition.  While the main issues she's been having the past month or two don't appear to be cardiac in nature, he is definitely concerned enough to want to do extra bloodwork on her.  He is particularly concerned about her albumin and hemoglobin levels.  They are low.  She's pretty anemic.  For some reason, Peyton has never had a blood transfusion, although we thought she was going to wind up having one last month, if you remember.

After a lot of discussion, he ordered labwork which we are going to have done on Tuesday this week when we bring Peyton in for her Neurology appointment.  We'll do the labwork first.  Once it's done, we'll call Cardiology and let them know it's done so they can be looking out for any preliminary results.  His hope is that he can get some results and then talk to the neurologist while we are still there.

We still have some outstanding tests from when Peyton was in the hospital.  We are hoping that we will be able to get some of the results when we see the neurologist.  The geneticists in Boston wants Peyton to have a shunt tap to get some CS fluid.  However, the neurologist here is hoping he can just do a lumbar puncture.  We're going to try to set that up.

Cardiology wants to do a heart cath, so we may try to coordinate that with the lumbar puncture.  The heart cath is going to require an in-patient stay, so that's out there.

As for the bloodwork on Tuesday, the cardiologist wants to see how the numbers compare to her last bloodwork done while Peyton was in the hospital.  He is wanting to bring her into the hospital as an in-patient - hopefully for a short stay - to do a blood transfusion and maybe an infusion of albumin.  I'm not sure if he has other things in mind as well, but he said he would like her brought in for a "tune up".  Her levels are really low right now and she's just not herself.  It's actually been pretty sad to see.  It is our hope that these treatments can help to bring her around to something of her former self.

To help ease some of the load on her heart, and possibly some of the edema (which actually hasn't been bad lately), the cardiologist has started her on Lasix. You can find more on that drug here - http://en.wikipedia.org/wiki/Furosemide.  In short - it's a diuretic.  If we can ease the load on her heart, then the thought is that it may in some way help with the regurgitation.  Go here to find out more about mitral regurgitation - http://en.wikipedia.org/wiki/Mitral_regurgitation.

For the past 5 days, we've been dealing with a Peyton who is not herself.  She doesn't look well.  I emailed the Cardiologist today to give him a heads up as to what has been going on with her lately in case he wants to expedite the treatments he has in mind.  She is lethargic (she's been sleeping since before 4pm and it's 7:50pm now), she's irritable, she has had diarrhea for 4 or 5 days, and so on.  The home nurse today is concerned that she has c diff.  You can read up on that here - http://en.wikipedia.org/wiki/C_diff.

I am so tired right now. Every time I feel like I've reached a new level of exhaustion, something changes and I reach a new level...again.  Today began with the suspicion of c diff.  I already have had increasing levels of concern about Peyton but once that happened, I became even more concerned.  I wasn't sure if this would entail a trip to the ER or to the walk in clinic or what we would need to do.  The nurse called the doctor's office (they are open 365 days with weekends being "walk in" from 9:30-noon) but they didn't have their phones taken off the answering service.  We didn't get through til almost 10am and then the nurse left a message with the nurse at the office to see what we were to do.  Finally she had to call them back at 10:50 to see what the answer was.  Ron, Moira and I usually go to the 9:30 service at church on Sunday, so we were unable to go.  At 10:50, we were going to have to be leaving to catch the 11:15 service.  I wasn't sure if we'd get to that either.  The answer wound up being that we had to go get a probiotic for her.  We left, worried about Peyton.  By the time the service began, I was really teary.  Fortunately, I could hide that behind the powerful emotion of one of our pastor's spoken word dialogue and a very powerful video about one of our church's family's adoption journey and new ministry as this was Orphan Sunday.  Normally I am into the music and worship and all that, but today I just wanted to sit and cry.

I'm just concerned and I'm not sure what is going to happen in the coming days or so.  I will keep you posted.

There are many people at church who have been providing meals for our family since Peyton came home.  You can't even imagine how grateful we have been for your support.  We've had some very delicious meals thanks to you ladies!  Thank you so much!!

I will keep you posted on how this week goes.