one for Emily :o) - thanks to a friend

Teacher Debbie Moon's first graders were discussing a picture of a family. One little boy in the picture had a different hair color than the other members. One of her students suggested that he was adopted.

A little girl said, 'I know all about adoption, I was adopted..'

'What does it mean to be adopted?', asked another child.

'It means', said the girl, 'that you grew in your mommy's heart instead of her tummy!'

3 Weeks after Surgery #2

Certainly, a week ago, we would not have thought we'd be where we're at today. So thankful, we are. Emily has started standing on her own for moments at a time, as wobbly as she is. She tells us, "I want to walk." Which means it's her choice for us to hold both of her hands as she slowly takes steps across the floor. As opposed to laying down on the floor and dragging her legs. It's amazing that she chooses to do that. Her leg pain is still there, though it seems to subside on some days. We've tried half doses of the nerve pain medicine so as to wean her off of it, but found that there are times to give the full does three times a day as prescribed.

Still...amazingly, no need for the catheter. I can't say enough of how much we're relieved not to have to do that.

I suppose we're taking it as it comes. We keep reminding ourselves of what the surgeon said of the possibility of this surgery needing to be done again. Although, he was anxious for us, at sign of her gaining enough strength to have the surgery to install the veptr as soon as possible, so as to begin straightening her spine. Otherwise, at this rate, she will never have opportunity.

We're hoping she will be able to start school this fall. The same that Andrew did when he was 3, which is a pre- pre-k to some degree. We'll see.

Amazing Progress

Emily is making tremendous improvements. Since Tuesday morning and waking up with a wet diaper, we have not had to catheter her at all. Which is huge!

Her legs still hurt and has to take nerve pain medicine. The pain, if we're interpreting correctly, is like the shock you feel in your pinky when your funny bone gets hit, except this is probably much stronger and worse. It's a shooting pain, like an electrical shock throughout her legs. We believe that by the way she has been sporadically responding to the pain.

However, today, Maria Marcela mentions that she has not complained of pain at all.

She is taking steps with the assistance of someone holding her up. She is unable to stand on her own at this point.

Thank so much for the concern. And thank you to the families who have visited, called, written, brought us meals, contributed to Emily's medical fund and, most importantly, prayed.

Quick Report - More Proof

I just got a call on my cell phone at work from Maria Marcela who handed the phone to Emily who told me she just went pee pee on the potty!!

Emily had told her mommy that she needed to go number 2, "go poop", in her words. And that's when it happened. So, we're unsure as to whether she had the feeling of the need to go number 1. We'll take what we can get at this time.

I can't tell you how much of a relief this is. Maria Marcela was expressing how she felt somewhat disoriented as this was all sinking in. This is certainly a positive sign, but she's not out of the woods yet.

Thank you everyone for your prayers!

Home Again and Recovering

Saturday's rest proved well for us and it gave us all of Sunday morning to pack and clean our Ronald McDonald house room. Interesting how that program works and is available. It is a terrific program.

We got home to Frisco early evening on Sunday after stopping to eat.

Yesterday, we had a little bit of an ordeal in which we needed to fill a prescription for Emily's nerve pain with a medicine called neurontin. However, we had a little hiccup in getting it. Seems as though very few pharmacies carry it and can't get it in until ordered and received the next day. We were delayed in getting it and could have ordered it Sunday night had we known that, but we had read that there were some legal issues and repercussions of taking neurontin, which had us concerned.

Well, as you can imagine, Emily was in pain a good part of the day yesterday while we were running around trying to find the medicine. We finally found a lab that actually mixed it for us.

This morning, we have a bit of good news and are hoping it's not just a fluke to have happened. Emily woke up with a wet diaper, which indicates...yes...she emptied her own bladder without the catheter. We're excited, to say the least, and poor Emily is a little confused since we've been teaching her not to go in her diaper. We'll see how the day goes and if she's able to continue. But, we will say, most definitely, this is a step in the right direction.

We'll keep you posted.

Homestretch

It's Saturday and we're being told that we actually can take Emily home. As it is though, we're going to take today and relax, practice doing the catheterization with nursing guidance so we can feel a little more comfortable doing it on our own. It's going to be a minimum of 4 times a day indefinitely.

Good new though. Emily took 13 steps across the floor with some assistance. It's incredible considering where she's been and what her immobility has been up to now. That's certainly a positive sign of her regaining the ability to walk again.

We can only guess what the pain feels like in her legs. More than likely a nerve pain much like when you hit your funny bone and you feel that shock into your pinkie finger. We have no idea to what degree though.

The plan is to rest and check out tomorrow. She's been given a wheelchair loaner until she can be fitted with one custom to her size. Of course, we're hoping, by that time, she won't need a chair. We're loaded down with boxes of catheters, surgical gloves, lubricant and iodine swabs, as well as pull ups.

We look forward to going home and would have today, but came to the conclusion that today would be good day to rejuvenate and then start all the buzz of packing up tomorrow.

Shalom

Roller coaster of a day!

When the day began today, we were with hopes of going home soon. That was dashed as we were told that, from their meeting, that we could expect Emily to stay another week. That prompted a call to the surgeon, in which I left a message asking for some help since they're really not doing anything that can't be done at home.

Later in the day, we're unsure as to whether the surgeon spoke to anybody, but we were told that we can actually expect to take her home by Friday or Saturday.

Emily still has pain in her legs, can't stand at all, even to be braced up and is still unable to even know when her bladder needs to be emptied much less go on her own without someone using a catheter. That was my job tonight before bedtime and let me tell you, it ranks high up there as one the last things a father should have to do. I think it's more humiliating than anything, but it must be done.

But before we go feeling sorry for ourselves, I just want to mention that, inevitably, it's easy to come across a situation that someone else is going through that makes our own seem not so bad. Take for example a man and his daughter we met today on the playground. Andrew started playing with the little girl and I came over and we started sharing our stories. His name is Malmut. He and his seven year old daughter Layla are from Istanbul. They've been here in Texas since last November with the wife/mother getting treatment for their little 2 year old daughter that has an incurable cancer. They're doing everything they can to extend her life.

That's just one. We're surrounded by it.

But we're also surrounded by people who come in and volunteer, whether it's preparing meals, coordinating activities or whatever. Usually it's people that have had to go through similar circumstances with their child or relative; like a woman who has been coming her for years since losing her 21 year old son to colon cancer.

It's an amazing side of life that we don't often witness, nor want to. It's an amazing lesson.

Coming Home?

We're not getting our hopes up...who am I kidding? We ARE getting our hopes up for Emily to come home within the next few days. The neurologist was by today and was saying that they could decide as early as tomorrow to send her home. This is great news, however, it means that it will be solely on us to empty her bladder.

Nonetheless, we're looking forward to everyone being at home. I think she will make great strides in walking again, just like she originally learned with incentive to keep up with Andrew.

Andrew just hasn't been feeling right emotionally with having the family split up and all. He's refused to go over to other's houses and play. But he's doing good. He and I went to a minor league baseball game last night in which he retrieved a foul ball. It made his day and he's holding on to that ball.

Rehabilitation for Emily

Since we're really looking forward to bringing Emily home, we're having to prepare ourselves for things that she will need done and either Maria Marcela or I will have to do them. One, was having to learn how to empty her bladder with the catheter. Last night was my initiation. Needless to say, it was painful for all of us. Quite a humiliating thing to do.

Today, Andrew and I headed back to Frisco and checked on things with the house and plan to go back tomorrow.

Maria Marcela told me that Emily did good today in her first rehab treatment. She was actually able to sit up on her own without being held. This may shock some to realize that's just where she is at. It's quite a set back for a little girl who was making huge milestones with walking and then running with her existing scoliosis.

We learned from friends that there was a day of prayer and fasting for her and others last Friday. Thank you so much.

We got home to find some gifts from cousins in Boston that Emily will certainly enjoy.

Weekend's Events

Here it is already Monday morning and I haven't posted anything since last week. Since having brought Andrew over and staying with Emily, it's been quite a monopoly of time.

I was able to give Maria Marcela a break from staying with Emily 24 x 7 beginning Friday night since we got a hotel nearby and allowed her and Andrew to enjoy some time together.

Over the weekend, we had a visit from the neurosurgeon who had expressed several things. The primary concern now is her the working of her bladder. She's not even experiencing incontinence. She's just simply not able to go. Which requires 4 times a day for the nurse to administer catheritization, empty the bladder by unnatural means. Needless to say, it's not one of Emily's favorite things. But there is even greater attention to emptying the bladder since she has only one kidney and we don't want to risk long term damage to that one. The doctor seems to be optimistic that she will ultimately regain her ability to walk. She is still experiencing a great deal of pain in her legs. It's amazing how she has this long 10-12 inch scar on her back from the actual surgery and she literally shows no indication of it being of any discomfort.

She eats well and we're trying to pump her with liquids so we can flush the kidney as quick as possible. This week, they will be focusing on rehab and getting her up and moving around, trying to get those legs moving. We're also hopeful that she will regain the simple urge to go to the potty.

We had quite a few visitors over the weekend and really want to thank our friends and family for that. There's also been some very generous contributions to Emily's medical fund of which we are incredibly grateful.

The hospital staff recommended to us the Ronald McDonald house here next to the hospital as a place for us to stay since we don't really know how long Emily will be in the hospital. So, at this very moment, I'm in one of the rooms they assigned to us, while trying to work my job doing a few tasks, etc. The option of staying here has relieved quite a bit of pressure from us since obviously a hotel stay can add up, but also the convenience of being right next door.

Andrew is enjoying it all since he loves staying in hotels.

The outlook: We're hoping she can go home in the next few days, but it means us administering the catheter to relieve her bladder. The doctor seems to think it will be a couple more weeks. He did state that, as far as he is concerned she can go home now, however, it's up to the neurologist to determine that taking into consideration her bladder problem and her legs.

Will give more updates as we learn more.

End of Day 4

This evening, Maria Marcela was saying that Emily had a better day today and was moving a little more. They are settled in the new room. The therapist came by to meet her and gave her a special small wheelchair that she can use to move around and to sit up as much as possible. She is extremely tired. So hopefully she’ll get a decent nap. She is in bed now.

The mood was quite a contrast from this morning. Andrew and I are planning on going back over tomorrow, getting a hotel room locally and giving Maria Marcela a break from the hospital room over the weekend.

Thank you again everyone.

Day 4 - Sobriety Settles In

Yesterday afternoon, Andrew, Maria Marcela's mother Beatriz and I drove over to visit and we found Emily in somewhat of a sober state. She managed to be entertained by Andrew's and Daddy's antics, but those were quickly dissolved when it came time to empty her bladder. Since she will or cannot go on her own, they use a catheter. She needed to go so bad it was hurting her tummy.

During the visit, we learned that the doctor has recommended her go into rehab today at noon, which means going up to the 6th floor. She is unable to stand on her own and we're still in the dark as to the severity of her nerve damage, particulary affecting her legs.

After speaking to Maria Marcela this morning, she described a rough night of waking up or being awoken to empty Emily's bladder, she went on to say how bleak the outlook really is. The doctor paid a visit and was more sober with his diagnosis. He admitted that Emily is a special case and her condition is serious. He believes that the very problem he did surgery to correct could very likely return and be an ongoing problem.

I suppose we can admit that we always knew the propensity of Emily's condition, but somewhat denied how grave the situation actually is.

It is interesting, that upon receiving this news, a couple days prior, a old friend had inquired about whether there was a fund set up for Emily and her medical bills. I didn't really want to think or admit that it could come to something like this, but it may be just what we're being shown to do. I suppose I'm a bit proud to have wanted to do this, but at the same time, I've never been one to want to close doors that are being made evident.

I have set up an account for Emily in which contributions can be made easily through PayPal if one chooses to. I can't stand asking for money. I will state neither that we need or don't need the money, but rather put it in our Father's care. I cannot see what is ahead, but have an idea of the potential financial burden that it could be. If one chooses to, you may send funds using emilysnyder@laydownlife.net at paypal.com.

To send a check via mail please ensure that her account number is listed on the check and mail to the address listed below.

EDSCU
PO Box 259059
Plano, TX 75025

If you would like to wire money to her account below is the information:

Please give the initiating institution the following wire instructions:

To credit:

EDS Credit Union
5640 Democracy Drive
Plano, TX 75024
ABA 311079474

For final credit:

“Insert Emily Snyder - Savings”
“Insert her account number: 14393223-Share Type 8”

We appreciate moreso, everyone's prayers and concern.

Day 3 - Improving

Spoke with Maria Marcela this morning and she said they both rested much better last night. Emily is still complaining of her upper legs hurting indicating it's closer to her torso, we still think that it may be the soreness from the work done around her spinal cord.

Definitely more pain and discomfort compared to her surgery back in October.

We hope that she will not have to stay much longer in the hospital.

MRI Results

Came back normal. Huge relief. Hoping for a restful night's sleep. Andrew and I will visit tomorrow.

Day after...

Maria Marcela saying Emily is not complaining about her legs now. Just the burning of the pain killer as it goes in intravenously. Rough night though.

The surgeon came by and has ordered an MRI to determine whether there has been any nerve damage, specifically to the legs. Will hopefully know something a little later today. She's currently on the IV to be fed since she has to stay on her back, but their hoping to take her off and sit her up soon.

Planning to take Andrew and Maria Marcela's mom over there later today to check in on them.

After Surgery Number 2

What a grueling day. Got up at 5 a.m. to be in Ft. Worth by 6:30 a.m. for an 8:30 surgery time. We were told it was going to take 2 hours. 6 hours later, the surgeon comes out and tells us to go into a private room.

He explains to us what he had to do; describing that the cause of the spinal fluid collecting was because of scar tissue building up from the first surgery. Going on to tell us that he's concerned that she's not showing any signs of movement in her left leg, but it's too soon to draw any conclusions. He told us he had to be very aggressive in clearing the area around the cord and had to touch it several times, which is absolutely what they want to avoid. His words, "the spinal cord was very angry with me today."

This may seem disgusting to describe, but at that moment my body seemed to just unload toxins to the point that it was disgusting even for me. I suppose it was just the stress of thinking of the possibility of our little girl being paralyzed.

Throughout the waiting to actually see Emily, I was updating my Facebook status whenever we received more information on Emily.

Needless to say, we had many people praying and a tremendous amount of relief to hear that her foot was responding to touch.

As soon as we got her situated in a recovery room, I brought Maria Marcela's belongings and headed back to pick up Andrew who was anxiously waiting since he thought it was only going to be a couple of hours.

Andrew and I are home and we just got of the phone with Maria Marcela AND Emily, who was undoubtedly in pain complaining of both of her legs hurting. She did not have the leg pain with her surgery back in October. So, there's obvious signs of the surgeon messing with the spinal cord.

They had just started administering a pain killer while we were on the phone and we're hoping for a restful night's sleep for both of them.

Thank you for everyone's thoughts, prayers and concern.

Second Neurosurgery - A setback

Today is July 1st in which Emily was to have her first surgery to install the veptr and begin her correction of the scoliosis. However, after both surgeons conferring, it's agreed that the problem of this new sack of spinal fluid needs to be addressed. Her surgery is scheduled for this coming Monday morning, first thing while the PreOp is this Friday at Noon.

We will certainly ask for prayers that they do not discover any problems and that the matter of the spinal fluid is resolved and we can move forward with procedures to straighten her back out.

Also, we ask for prayers that insurance will cover the majority of this surgery. I just received word that we're going to be responsible for 20%, which could be to the tune of $15,000. Although it wouldn't be the end of the world, we just simply don't wish to get into further financial straits here. Emily's health and well-being are certainly priority.