Kindergarten Orientation

We are headed there today.  We got his supplies weeks ago and the last few days I've been gathering up all kinds of things in addition to the "normal" requirements... filling out forms, faxes to and from doctors, looking up old documents and updating them to give to his teacher and the school nurse, reviewing emergency plans, etc.  

Its stirred up a little anxiety for me and what I like to be dramatic and call PTSD (not really, but maybe sorta?).  Remembering what those days were like and just the many unknowns for Peter.  Thankfully, time has eased those and allowed us to see that most of the possibilities have not been the case.  He has done so well.  But looking again at medical reports, documents and the like, it just stirs some heartbreak and grief in me.  And I have to try to not stay on the tiny bit of trepidation of the future possibilities and trust the Good Shepherd to lead us.

So you can pray for us and for Peter that he'd continue to do so well and that he'd thrive and excel in school and his health would continue to be great.  Thank you.

forms

Just sayin'... If you can just check normal, it makes things a lot quicker.
It humors me that I've mentally noted this so many times that I have lots of pics of forms on my phone.  It must help me mentally to document the extensive forms.

Paperwork when you have a medical history takes a while.  And for heaven's sake, I can no longer remember every detail of my child's infancy, like when he "rolled over both ways" or "ate with a spoon" (and is that when he was willing or when I was willing) and I certainly don't know what to write for "In ONE sentence, how would you describe your child".  
We are going to a new OT place tomorrow.  I am very excited (for real).  But the paperwork most definitely does NOT excite me.

I am not complaining.  I am full aware of how good we have it.  But for the world to know, it should not be (and is not) taken for granted when you can just check normal and move on.

No Idea

In my 6 years of being a nurse, I never had any idea of the anxiety that existed on the other side. 
Today we had an appt with a pediatric neurologist.  He's one we'd only ever seen as an inpatient.  After his regular neuro appt in Jan, she referred us to get a second opinion on his sleep studies.  We were thrilled b/c that meant we got to see the highly-sought-after Dr. L.  So we saw him today.

I am always super anxious about these appointments.  Not as nervous as I was earlier on this journey, but there will always be some anxiety mixed in.  Mostly, for me, it comes from believing that its all so dependent on my "report" and my observations.  Today on the way there, as it came down to the wire, it finally came to me in my anxiety, that I am given no choice but to trust in the sovereignty of God.  To trust that He covers all of the areas that I have no idea about.  And finally, that brings such rest and peace.  

The appointment went really well.  I didn't expect to come away with much new information, just some confirmation on what we already know.  I sorta felt selfish in taking this doctor's time to have some of my emotional needs met.  But I'm also a mom and I want what's best for my kid.  And I want lots of doctors' input on that, to make sure we have all our bases covered.  He was reassuring that we don't need to be alarmed about any of the concerns we had taken to discuss.  

And we got to, once again, discuss the great thing it is that his seizures ARE controlled on ONE medication.  (I sorta tremble to write that b/c as much as time has taken some of my anxiety of that not being true, I am always aware that anything is possible.)  Its almost been one full year since we've seen any seizure activity.  I am forever grateful.  We continue to pray that would be true.  And tremble at the thought of it not being true.

All he had to say on other fronts was reassuring as well, specifically about the differences in boys and girls.  I for some reason sorta thought I had a clue about boys having grown up with brothers.  Turns out, it all stumps me on a daily basis.  I'm constantly praying for more understanding and wisdom in parenting a boy.  Well, parenting in general.

A bonus today is that a sweet friend kept Lily for me.  So Peter and I had lunch together afterwards at Chick-Fil-A.

 Cheers for chicken and waffle fries!!

We are doing the Apostle's Creed at church.  On Sunday, we talked about God being the Creator, "Maker of Heaven and Earth."  We read these verses.  Peace came over my hectic body at the hearing of God's Word.  

May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins.  He is the image of the invisible God, the firstborn of all creation. For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.

Colossians 1:11-17

Thank you, Creator, for this boy!  

{pictures are my Picasa version of Instagram :)}

Medical Update

We are in need of pictures on here... next post, whenever that may be...


So this past week, we've had some follow up appointments.


Monday, it was the Sleep Study results... Peter's apnea had improved from 5X/hour to 2X/hour... but the doctor still recommended CPAP (a mask you wear at night that's hooked up to a machine that keeps your airway open... positive airway pressure)... great.  There was immediate prayer for the Lord to help me be open to the idea.  They told us a tentative plan to get him used to it, which by the way included another sleep study for the first night hooked up to CPAP (um, I don't think that is gonna fly with the boy and I DO NOT blame him.) So we were gonna play it by ear as the appointments went on...


Tuesday, it was our first neurology appt since April (thank you, Lord!).... just to follow up.  Obviously, he has been doing really well.  We can not say that we have seen any seizure activity so we are continuing with more of the same... which is great.  Please continue to pray that would be true.  Lord, heal our boy!  My main gripe about neuro appts/assessments is that they feel 90% subjective based on  our report.... argh.  Altho Peter has been doing so well in general in the last few months, in the last week he has had more behavioral problems in my opinion... more impulsive, not a lot of self control, a complainer, out of that "mature" phase I mentioned recently.  So I never know what to make of it.  I've never had another boy obviously, but there are times that he is just so different than our other little (tho she can have a case of the 2's lately, but smaller scale)... my data group is small and only includes two so I don't know exactly what to make of it.  But we'll go with it.  So the great part is that we could talk with his neurologist about his sleep study.  She does not feel that his sleep study is "bad" enough that it plays into the picture with his seizures.  So I guess that's good (and bad).  She felt like CPAP sounded a bit extreme.  So she told us she'd schedule us a consult with another neurologist who directs the sleep center at VCU.... that it may be a few months (after we'd have had to make the decision with the St Mary's doctor).  Well, the VCU doctor himself left us a message yesterday!!! My jaw stayed on the ground the whole message.  He was the first neurologist we saw at Peter's first admission last winter.  We adored him but he only sees patients in the sleep center (and makes inpatient rounds).  He's felt like this great & wonderful doctor that we just aren't "allowed" to see (and he left a voicemail for us!!  WOW!)... SO... today I called him back.  And talked to him, right away!!  What?!  This is SO rare for us!  He was as wonderful as I remember... calm, kind, smart (really smart), fatherly.  He said that he spoke with Peter's neurologist and reviewed his sleep study report and that he is "under-whelmed" with Peter's results.  We do NOT need to treat him.  His results were completely in the range of "normal" for his age.  WOW!  We are so relieved!  It is such a blessing (and answer to prayer!) that we do not have to "decide" whether to follow the original doctor's recommendations.  I feel really good about it.  More still, I talked with him about Peter's daytime breathing.  He said that is also not of concern to him.  It sounds familiar (he is the first doctor to say that after telling five doctors about it).... it could be related to his muscle tone as I suspected but its not detrimental to his health (only my nerves).  ;)  So my plan is to have him just sit in an upright chair (to encourage better posture) to watch TV and ban him from the couch (tho, I better have low expectations for this)... I am learning that my "black and white wiring" rarely really works.  Ah, sanctification... 


Peter and Lily are off for the weekend with Maw and Paw to see Copper and ride the tractor... oh, fun childhood and fun weekend with my favorite person.  OH, and painting! (pictures to come sometime... who knows when....) and a trip to the river house!!  

1 year ago

Peter was at the hospital for that first admission.  

So thankful for where we are one year later!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!

Middle of the night

Hanging out in the boy's sleep study room*.  About 1:30am, I gave up attempts at sleeping. I get too restless and my legs are aching. Trying to sleep means thinking about that so a distraction sounds better.  I wish this could be our last ever "tail" (and overnight together in a medical facility) but I can't be sure of that. But I've come up with best case scenario (as if I could be God).... One more EEG in 2 years after being seizure free all that time to find out his EEG is PERFECT. Wouldn't that be GREAT! Lord, hear our prayer and thanks for all the ways You already have! I guess it is sorta nice to have a few hours of quiet peace. 
*This study may be a little of a luxury (if that's possible) to follow up on his apnea after T&A because of his neuro history. And we are getting it in at the end of insurance year... Woohoo. We know how to have a good time.

Good BYE 2011!

A few weeks ago, I spent a little time reflecting on 2011 and I am just now typing it up.  It was quite the year.  I wanted to have to these things documented in one place for the sake of remembering the craziness... That one day (even today!) we will praise our Father for where he has brought us from and that it could be an encouragement to someone else in the midst of a hard time or something similar.  For me, it was a year marked by lots of hard circumstantial things but also by anxiety, depression, and grief.  Praise the Lord for new seasons and years!  2012 already feels different.  We know that He calls us to trust Him no matter what the future holds but we pray that its different than 2011.

2011 

:: a year that was sobering and took away some of my naivety, a year of learning that anything is possible.  It aged me!!

:: the heartache of just losing Charlie and Alvin.  It leaves such grief, so I can hardly bear the grief & missing for Holly and Glenda.  And yet I wouldn't have had it any other way than to walk closely with Holly.  I read this recently and it sums it up well... I repeatedly remind myself that it is never "too soon" to be with Jesus, but it is always too soon to leave our loved ones. One does not cancel out the other. Both are simply true.  May the deep grief be wrapped in certain hope that death will never have the last word.

:: the agony of taking my boy to VCU for the new onset of non-febrile seizures and poor coordination.  Then having him worked up for what seemed like all neurological possibilities under the sun.... and one by one they were ruled out/checked off... brain tumor, anatomical anomaly, metabolic disease, known genetic conditions, each feeling like a forever wait and slow agony...waiting and then more waiting ... for some overnight and others that took WEEKS (read it slooooooowly, that's how it felt... slo mo).  And then, the one that caused me the most anxiety was the work up for a Lysosomal Storage Disease.  (what a nightmare!  Oh, my heart, for the parents of a child with one of these... its too much!)  We are so very thankful for God's mercy that all of those were negative and for the control of his seizures on Keppra.  It gave me a new perspective on the life of people whose children really have something hard that they have to deal with health-wise.  And it have me a new perspective as a nurse on the patient and family's experience.  Ugh, the suffering, I hate it! 

:: the pain of losing what we thought would be our 3rd child to miscarriage.  And the ongoing grief of that lasting all year... esp after I felt a little more free to process it once Peter's health was less of our focus.  And then the wait of not being able to move forward because of some ongoing genetic tests for all of us, which were thankfully normal.  In the recent weeks (of 2012), I have felt such a freedom from this grief.  And more of a thankfulness  for what we have and ability to trust God's sovereignty over our family.  

:: And it can't be overlooked that in 5 weeks, we went to 

• the ER 4 times (one long weekend, we went 3 times in 4 days), 
• had 4 hospitalizations, 
• 2 surgeries, 
• and one speeding ticket.   All of it was enough for a lifetime!

:: lots of therapy for Peter:  occupational, physical, and speech.  Wishing we didn't have to go, being thankful our insurance covered it, and hating the pain, suffering and trials we saw there of other children and their families.

:: High-Fiveing so many times over the blessing and provision of awesome insurance thru Mike's job.  And MANY, MANY hours spent on the phone with our insurance company working out all of the benefits.

:: In our year of heartache, its been a season that Mike really enjoys his job... what a blessing!

:: Thankful for the gift of feeling like I have a clue (if only a small one) about healthcare & medical things from my time as a nurse... and knowing other people who know more!

:: The gift of friends, family and the body of Christ at our church.  Grandparents and our small group carried us.  From Joe's visit to talk with us and assure us from God's Word that Peter would go to Heaven should he leave us too early (I lost all reservations to ask anything when my boy was sick) to Blair and Susan sitting with us that Saturday morning over a Chick-Fil-A breakfast, and Blair giving me the bobby pin that was in her hair (it's the small things!).  Dinners waiting for us (thank you, Joy!).  Susan babysitting while her husband took time out of his day of doctorly responsibilities to be with us at the hospital and at doctors appointments. I don't care to go thru any of this again or ever walk thru the doors of VCU again but I am thankful for the people who loved us so well!

:: Oh, how we love Keppra and the seizure control it provides.  Lord, may it continue to be so!

:: 2011 was the year that Lily grew up and the gap between her and Peter became so much smaller.  She became a partner with him in all things childhood... esp the world of pretend.  I love seeing them enjoy each other and the blessing of them being completely unaware of all the stresses that have been present in our grown up lives. 

:: Seeing the faithfulness of God through my marriage.  Thank you, God, for my Mike!

:: wrestling through my own struggle of how this is different than what I imagined... definitely the things mentioned above but also my own strength, perseverance, perspective is severely lacking!  Not being who I wanted/want to be.  Ugh!

:: And as last fun marker of 2011... FUN with the kids!  We did have FUN too!  Days at the pool, hearing all of the new words and phrases they are learning, cracking us up on the the things they pick up and remember, pretending together, hugs, laughs, etc, etc.

:: Verses of the year:
   "Bless the Lord, O my soul, and forget not all His benefits"  Psalm 103
   Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”  John 11:4
   Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”  John 11:40 

Part of our Story

I thought I would add the emails here that we shared while we were first working through Peter's epilepsy in early 2011, so that I'd have them all in one place... :)

This doesn't include the hundreds of emails of support and encouragement and prayer we got in reply.  :)

1/27/2011 me to close girlfriends
We brought peter to ER at vcu today for weird, quick, seizure-like
episodes and poor coordination at our pediatrician's recommending.  He
is staying overnight for labs and an EEG.  This should get us started in
an explanation of past febrile seizures & low muscle tone, etc.  I am
happy for someone to finally investigate it all...    We are sharing
with our close friends but I feel like this could be overwhelming for
us so are not broadcasting.  You can pray for us & for our Pete.  XO
lpPs- Moms are here helping us...

1/28/2011 to our parents
Things went pretty well in the hospital last night. The neurologist gave Peter a 23 hour admission. The got blood for tests. Peter was great while they put the EEG electrodes on his head. Not quite as great while the geneticist saw him. He was pretty upset about the splint on his arm for the iv. He was up for while in the night, and I think I noticed a "jerk" at 1:00am. So hopefully that was captured on the EEG. He's sleeping now, and will have an MRI today. All in all, I think we are getting what we'd hoped for by going to the ER (seems like a funny way to say, "I want an appointment sooner than that"). Neurologists are seeing him and running tests. He did say yesterday that these will probably not be conclusive and there will be more outpatient tests to come. But I think it's great that they are investigating what they can. We didn't get real good time with the geneticist, we'll see if she comes back today.

I'm enjoying the quiet while he sleeps.

Love,

Mike

1/29/2011

Hi everyone,

Some of you are just getting adding to this email (sorry about that) so it may make more sense if you start from the bottom and read up.  

Peter came home from the hospital late this afternoon.  He is acting more like himself.  We are praising God to be back together as a family at home tonight.

In summary...

We know that his brain has a low seizure threshold & waves on his EEG that indicate seizure activity.

He continues to have low muscle tone & poor coordination (but it is improving, we think) and are praying that it continues to improve to his baseline.
The doctors are still unsure if or how these two are related but we are awaiting the results of some lab tests that should be back in the next couple weeks to help determine this.

The possibilities have been narrowed down (we are thankful for that!) but there are still lots of possibilities of the cause.

We have seizure medication in hand but we are trying to wait for his coordination to return to normal before we start it (as long as we don't see seizures... we don't think we've seen any jerks today) so that there is one less variable to consider in trying to determine the cause of low muscle tone and poor coordination.  

We will follow up with neurology and genetics at VCU in the next month.  

So we ask you to continue to pray with us that Peter returns to his normal (and exceeds it!), doesn't have more seizures, and that the doctors can find the cause and its nothing major... 

Pray for me (Laura) as Mike goes back to work next week and I learn to care for both of them with this new (hopefully minimal) factor. 

We are so thankful for all of the help we got from the doctors and our families.  

Peter netted 5 new trucks/tractors, new stuffed animals, fun balloons from the ordeal.  We got most of our dining room painted, our house cleaned, had visits from friends, and YUMMY food cooked for us.  

We're doing OK! ;) 

Thank you for praying for us!

Love,

Laura and Mike

On Sat, Jan 29, 2011 at 12:54 PM, Mike Perzanowski <mike@perzanowski.org> wrote:

Hi all,

Laura's email from yesterday never got sent. So, look below if this is the first you're hearing about Peter being in the hospital. 

1/29 - Peter slept through the night last night after being kind of punchy and clumsy before bed (not sure if it was from the drugs or anesthesia). This morning he was slightly better but still uncoordinated. I think the doctors will send us home today. The MRI was clear/normal and the EEG indicated he could be disposed to seizures. The blood tests results that have come back are normal.. there are more blood tests that will not be back for a while. They have prescribed a drug that helps with seizures, though they are not sure the jerks we were seeing are seizures. We won't give him any more of the medication until we see how he is acting for the next couple days. 

Thanks for your prayers and offers of help. There is still a lot that is unknown and a lot possibilities of what could be wrong. The doctor admitted that is pretty unsatisfying (we agree). So please keep praying. I am encouraged that there are tests being run to figure out what's wrong, but I think is not a fast process as there are a lot of possibilities.

Love,

Mike & Laura

---------------------------------------------------

Update from Friday 

1/28

Hi everyone,

Some of you already know... At the recommendation of our pediatrician, we brought Peter to the ER yesterday (Thursday) at VCU for some unexplained "episodes" of involuntary jerks and poor coordination... we are trying to figure out how issues that he's had fit together.  Our pediatrician felt we'd get the best answers here, instead of just at a "community" hospital.  We've had great care that we are so thankful for.  He's being seen by pediatrics, neurology and genetics.  They are investigating both his seizure related issues and his low muscle tone.  So he has had a lot of lab work, an EEG overnight (to look at his brain waves), and is having an MRI now of his head and lumbar spine.  I think there are a lot of possibilites of what this is.  But we are trying not to jump ahead and just pray for him and let the doctors figure it out.

Please pray for him and for us.  Pray that it would be something that is easily treatable and temporary.  Pray for Peter to not be scared and to be comfortable. Pray that we would trust God b/c He is faithful and good to us, even in this.  We have moments of feeling OK and moments of being really scared.  We love our boy and want the best for him.  Please join us in praying, praying for God to heal him & take care of him.  

Our Moms are here and helping us so much so there is nothing that we need right now other than prayer. 

Love,

Laura & Mike

1/30/11 from me to girlfriends, sisters in Christ
 Hey girls,

Will y'all pray for me today...  I'm having a hard time.  I'm just really anxious and worried and crying this morning (and I didn't sleep well- I didn't take Benadryl like I had the previous 2 nights).  Peter is about the same... which is good and not good.  I'm glad he's no worse but he's still just clumsy & uncoordinated so that worries me.  I've told Mike that when I can manage to not jump ahead and rush to conclusions and stay behind the Shepherd, then I am OK.  But last night, I read stuff on the internet about metabolic genetic problems (which is what drs mentioned- don't go and google it so you don't panic for me!) and then I just PANIC and am having a hard time regaining my composure.  Last eve (before I looked online), I was feeling good, trusting God that He will take us thru whatever this is & feeling totally OK that He has allowed this.  Mike said that Lily opened the Bible that was in Peter's room and it was John 9...

1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”   3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. 

That was really great to read, I'm happy for that to be true in our life.
But then this morning, I'm just a wreck.  So would you please pray for us and pray boldly for God to heal Peter and to give us His Spirit to take us thru this.... and take over my crazy emotions.
Peter is clueless about all of this.  He is his sweet, friendly, happy go lucky self.  I hate for him to see me crying and then make him concerned about what's wrong.  Mike is also doing great and being really strong.
 Thanks for praying for us, I'm feeling shameless in begging God to help us and in asking for you to pray, which I guess is a good thing. 

XOXO
In Christ,
Laura 

2/3/11

Hi everyone!

Thank you so much for praying for us!  We are sure we are doing well b/c of your prayers.  We wanted to give a quick (good) update!

Peter had about 3 more "jerks" on Monday so I started giving him the seizure medication on Monday.  He has done GREAT on it!  He hasn't missed a beat, and I even think he could be better on the medicine (fully back to his pre-hospital abilities).  So we are praising God for that!  He went to school yesterday and had a great time!  :)

We do continue to pray for his healing and a great report from the doctor on Tues, 2/15, when we get more lab results.

I have not been worrying much so I am really grateful that God his helped me in that.  And I am thankful for Mike b/c he has been the one to talk me down from my worry and God has helped me to submit more to his feelings about everything (which doesn't involve worry!)

Peter starts physical therapy today and occupational therapy on Monday.  So we are excited for him to start.  I am also a little nervous about it so you can definitely pray for him and me as he starts that and we adjust to the new schedule.  We are excited to have found a babysitter for Lily while Peter has therapy. :)

Thank you so much for caring and supporting us.  It means so much to us!!!

Love,

Laura

2/10/2011

Hi again everyone!

We wish we weren't writing but we are...  

First, Peter is OK.

Peter had a BIG, full blown seizure out of the blue tonight a little after 6pm.  I was home alone with the kids and it totally caught me off guard.  After attempting but being unable to coordinate my fingers to use my phone, I carried Peter to my neighbor's house and she called 911 for me (then came back and got Lily from our house).  It felt like the seizure lasted a LONG time... for sure, his longest & worst ever.  The squad arrived in record time (they are 2 blocks away) and took him to St Mary's (we LOVE St. Mary's!!).  It was for sure the scariest thing I've ever experienced & do not care to experience that ever again.  After observing him for several hours (seeing him laugh!), talking with the doctors at VCU, and giving him an increased dose of his seizure medication, they released him.  He announced to everyone as he left "GOO (mike's mom) IS AT MY HOUSE!"... and now he's fast asleep in his bed.  :)

They have increased the dose of his seizure medication.  We will continue to wait on the results of the lab work that we will receive at our follow up with VCU Neurology on THIS Tuesday at 12:30pm.

Of course, like always, our biggest request is that you pray for the Lord to heal Peter, whether that be tonight or in a few years.  We pray that he would lead a LONG and HEALTHY life.  We believe He can do that!  And we look in faith for it!

Also, pray for the Lord to give Mike and I strength & peace.

We can not thank you enough for praying and begging God to heal our boy.  We hate it for him.  Please continue to pray with us!

Thank you and we love you!
Laura and Mike

2/12/2011

WEPC Elders,

Sorry for the late notice, but Mike & Laura Perzanowski have requested prayers for their son, Peter, by the elders. Peter is three years old and has suffered from seizures for many years and most recently had a big seizure, along with some "jerky movements." You can read the emails below from Mike and Laura explaining the most recent episodes for further and better explanation.

If you are available, please come to Room 121 (one of the nursery rooms in the back hallway upstairs) directly after the second service tomorrow to pray for healing for Peter. 

--
Joe Brown

2/14/2011

Peter broke his arm.

If you haven't heard, Peter fell off his bed last night and broke his left arm.  He got splinted in the ER and will be casted sometime in the next week or so.  He's on a good pain med and TV watching regimen. ;)  

We hope we are all done with sickness and injuries.

xo, lp

ps- he was just jumping/playing, no seizure involved.  Praise the Lord!

2/15/2011

the drama continues...

... thankfully, it doesn't involve seizures.

First, neuro went well today.  His expanded newborn screening was NORMAL- Praise the Lord!  We are soooooooooooo very, very thankful.

So they have eliminated a lot of possible causes...  I have a hard time completely understanding everything neurological but here are my bullet point take aways...

*his seizure medication will be increased (same dose but we'll give it 3 times a day, instead of 2 times)... bring on the Keppra, I hate seizures!

*they will proceed with Lumbar Puncture and an admission to the Epilepsy Monitoring Unit at VCU.  They have to get our insurance approval first, so we don't have a date.

*They'll send spinal fluids for tests... (sorta beyond my understanding as to what exactly they are looking for... something that involves electrolyte pathways, etc??)

*I have an uncle and a great uncle who we think possibly had seizure(s) as a child (but no living relative to completely tell us the story)... both of them are alive and WELL... so that makes the neurologist maybe lean toward a electrolyte pathway something or other.  Of course this makes me hope he'll outgrow it but of course, they won't tell you that (liability?!).

*I asked about the "criteria" for epilepsy... are they saying he HAS epilepsy?  Neurologist was vague, saying epilepsy covers a variety of conditions.  I'm just calling it seizures (and hoping for no more!).

On to the rest of the drama...

Sunday night, Peter was playing on his bed and fell off and BROKE HIS LEFT ARM.  We took him to the ER at St Mary's (again!).  They splinted it.  Today we took him to Tuckahoe Orthopedics.  We thought it was a simple fracture that would be casted today.  NOPE, his elbow is all out of place.  He needs surgery to put his elbow back in proper alignment, then add 3 pins.  So that is tentatively planned for TOMORROW morning (6am arrival, 7:30 surgery).

THEN, as they were checking his temperature (for pre-op) and it was 99.9 and 100.2 (in his ear).  They don't have "regular" thermometers at the Ortho Office so asked us to go to our pediatrician (ugh!!) TONIGHT for clearance for surgery.  Peter has an appt at 6:45pm.  Would you pray that he is CLEARED and can have surgery?!  And please, no seizures from the possible fever.  The NP at Ortho thought that the low fever could be related to the huge amt of inflammation in his arm, but still wants him to see pediatrician.  We are headed there shortly. 

Thank you for your prayers!!!  We need them!

XOXO,

Laura

Update:  Peter's temp was 100.9 so no surgery tomorrow (no clear source of infection/fever). He is cleared after being fever-free for 24 hours.  We'll keep you posted.  Thank you for caring/supporting us. :)

2/17/2011

Surgery is Friday morning

Surgery on Peter's arm is tomorrow morning at 7:30am.  They hope to be able to "pop" his elbow back in place after he is under anesthesia then "shoot 3 pins in"... Its being done by Dr. Sharps.

He's looking forward to his "LEL-LOW" cast!  Thank you for praying!

Love,

Laura and Mike

3/2/2011 (These next two might be the hardest one to copy here.)

Hi friends,

I had U/S today and there was no heartbeat.  Baby measured 6 weeks 4 days in size (and should have been 8+weeks)... so I'm gonna have a D&C hopefully tomorrow if they can fit me in. 

I'm OK, have obviously cried a lot, and still am off and on.  I also feel sorta peaceful at times (sorta guilty for having a little peace too- wierd).  I know its hard short term (D&C, bleeding, loss) but sorta easy long term (feel guilty about that too).  I am SAD that we won't have a sweet, sweet baby.  

This seems somewhat smaller in comparison to stuff with Peter, am glad this doesn't involve the anxiety of seeing my child have neurological changes.  Buts I'm still sad.  Mike has been so sweet.  And my parents have been here today.  I think my mom might come back tomorrow.  Thanks for your prayers.  Love y'all and I'm glad you're my friends!!!!

XOXO

3/3/2011 from Mike

Sorry for more sad news,

Yesterday, we went for Laura's 8 week ultrasound and the baby had no heartbeat. We will go to St Mary's today for the D&C. We are not spreading this wide, but would love your prayers. (I know this is the first some of you are hearing of the pregnancy, sorry about that) 

Obviously this is a hard time emotionally and physically especially for Laura, but she is doing well. We know that God is good and good to us as evidenced by sending His son to die on a cross for our sake. And this has made us especially thankful for Peter and Lily.

Please pray for the procedure today and for recovery as well as the grieving process.

Also pray for Peter's tests next week on Tue and Wed. He's having an LP and a video EEG.

Thanks,

Mike & Laura

3/7/2011

Hi friends and family,

Peter will go tomorrow for his scheduled VCU admission that we've mentioned in previous emails. 

Tomorrow (Tuesday), we'll arrive at 10:30am and go to the Epilepsy Monitoring Unit.  He'll have a video EEG there (not sure how long).  

He'll stay overnight on Tues (Mike will stay with him) and on Wednesday afternoon, he is scheduled for a lumbar puncture.  He'll receive sedation for this.

We plan to come home after the LP.  Our parents will be helping us and taking care of Lily.

His doctors names are Dr Kernitsky and Dr Mathew.

Thank you for praying for the Lord's Hand to be over him and his stay there and for wisdom for his doctors.  We welcome your prayers and encouragement.

Love and thanks,

Laura and Mike

We look forward to this being true!  :)

Psalm 126: 2-3

2 Our mouths were filled with laughter,
   our tongues with songs of joy.
Then it was said among the nations,
   “The LORD has done great things for them.”
3 The LORD has done great things for us,
   and we are filled with joy.

Our email updates sorta dropped off at that point, but I did find this one...

3/31/2011 to Kathy

I don't know if I updated you further about neuro/genetics stuff.  I talked to the same gentleman at Genetics again earlier this week (Steve Rice.  He's the clinical coordinator, I think.)  He talked to Dr Bodurtha (genetics) and Dr Kernitsky (neuro) and they are BOTH going to meet with us on Friday, 4/8 for his Genetics appt that day.  Dr Kernitsky did review those labs I mentioned earlier and said they were all "essentially normal"  (HOORAY!).... but they are waiting on one test called SCN-1 that is still pending (has to do with the sodium-channel stuff she mentioned at the appt).  They'll decide on re-doing the chromosomal studies after they have the results of that.  Steve Rice did tell me that they reviewed Peter's case at a department meeting this week with lots of drs.  I don't know exactly what they came up with, what others' thoughts were but I guess we'll find out and come up with our plan from here at next Friday's appointment.  So we can keep praying that SCN-1 is negative (I think!)... and just for healing and a good outcome, for our boy to be healthy and strong!

And I made him an ophthalmology appt for April and a speech eval at Children's for May.  (We now know that ALL of his ongoing PT & OT is covered at 100% by our insurance since we will have met our deductible...  and he'll be able to get more than 20 visits if we just get it requested by the dr ahead of time...  so I'm like let's get speech too!... and I'll talk to Charlotte about it.)

4/8/2011

The appointment today went GREAT!!!  Oh, we are just thrilled!!  

His SCN1A test came back NEGATIVE / NORMAL!!!  My impression was that most of the severe epilepsies would be positive for this.  So its great news!

Dr Bodurtha (genetics) and Dr Kernitsky (neuro) were both so helpful & kind and really positive about how well Peter is doing (as are we!)... he seems to be improving with his therapies, his medication is controlling his seizures well w/o side effects... and so far all testing has been normal.  They will run one more blood test that he had drawn today called a microarray.  Its a broadergene/chromosome test.  We will have the results of that in 3-4 weeks.  

I have been worried about a particular syndrome that I've seen on the epilepsy website.  Dr Kernitsky was able to reassure me that the EEG pattern for that looks much worse than Peter's does.  

Also, there were lots of possible scary conditions that have been mentioned to us as possibilities, that they would be able to investigate thru further testing called "lysosomal storage" studies.  Dr Bodurtha feels its very unlikely that Peter has any of those and so doesn't feel the need to proceed with that testing now (great news!).

A big thank you to the Childress family for helping us both at our appt and with childcare!  :)

Celebrate & Praise God with us!!  Thank you so much for your prayers.  You can keep them coming that he'd continue to do well and grow strong and healthy!  We feel SO blessed by the news today.  How can we pray for you?

In Christ,

Laura