The Same God

I am finally beginning to feel like all is well with the world, or at least with my little sphere of it.  What a month February has shaped up to be for our family.  It has been a stressful time both emotionally and physically as we worried about my mom, cared for Lilly in her recovery, and also attempted as much as possible to re-enter the normal daily routines with Jared and Anna and the many activities their lives entail.  Not to mention the stress for Tom as he re-entered an already chaotic work enviornment after two weeks away, with much uncertainty remaining as to our next assignment, all the while knowing there was much happening at home. 

As I went for a much-needed long run on Monday--needing to expend the physical energy to relieve stress and take some time away alone--I found myself praying and reminding myself that the God that brought Lilly through her surgery and guided Dr. Campbell's hands is the very same God that was at work in my mom's body and working through her doctors and nurses here.  He was so very good to guide my mind and my heart to remembering that He is more than able to do all things, and has purposes and plans--often involving circumstances we wouldn't choose for ourselves--that surpass our ability to understand.

So, after 3+ days in ICU and 6 additional days in a regular hospital room spent recovering from a "bad pneumonia," my mom was thankfully discharged today from the local hospital.  The fabulous doctor who took care of her during the first few days of her stay told her she had "walked as close to the edge of the cliff as you ever want to let yourself get, without falling off."  We celebrated at my house tonight with dinner at a kitchen table in a normal house...no hospital trays, no styrofoam cups and drinking straws, no hospital gowns, no medical staff (well, Tom was there, too, but only in the capacity of super-husband, daddy, and son-in-law).  My folks will stay here locally in a home that is less than 2 miles from us which is being graciously opened to them while its owners reside in their permanent home elsewhere.  We are so grateful for the Air Force family--one Air Force set of grandparents helping another set of Air Force grandparents out.  So my folks can be very nearby and we can enjoy spending time together, while they also can have their own quiet and germ-free space so my mom can be comfortable and can get the rest she needs before they venture northward to PA (and the ice and cold--who needs it?).

As for Lilly, she continues to become more and more herself, and is nearly fully adapted to her new shape and new stature.  There are a few daily tasks that are still more difficult for her because of her balance, coordination, and lack of flexibility, but we are working on those day by day and she is making great progress.  (This mama is having to get used to her new height too--I whacked her head with the microwave oven door as she helped me bake sugar cookies to take to the hospital because she *used* to fit under the microwave oven door when standing on the step stool.  No longer.  Silly mama!)  She had her first OT appointment today, and next week will also begin receiving PT in addition to the OT to help her build strength, flexibility, and coordination, and teach her some strategies to do things in new ways when needed.  She is still quite obviously needing her pain meds regularly...she will show signs of pain and discomfort after about 4-5 hours between doses, and within 15-20 minutes of taking her next dose, will begin to act totally like Lilly again.  She is also beginning to stretch out her sleep a little bit at night, so I am feeling a bit more rested every day. 

Here are a few videos from the past week or so, showing some of the things we have been up to...

First is a clip of Anna swimming the 50 yard backstroke at her recent District Championship swim meet in Pensacola.  She came within a few tenths of a second of qualifying for the Southeastern Regional Championships--we were really proud of her and she had a great meet, dropping time in every single event she swam last Saturday and Sunday.  Most exciting was watching the relays--she anchored the freestyle relay, and she led off the medley relay with the backstroke leg.

Next is a clip (sorry, barely any sound through the door!) of Jared playing his trombone solo at the regional "Solo and Ensemble" competition for middle school band students.  He scored a "Superior" rating--the highest rating awarded by the judges.  Tom was able to stand outside the door, but it was just Jared, the accompanist, and the judge in the room.  He has been working hard on his trombone and it shows.

Finally, here is a short clip of Lilly's first post-surgery steps while in CHOP.  I think this was probably post op day 2 or 3....  I had hoped to post this side-by-side with video of her walking around now looking so normal and tall and coordinated while walking, but that clip will have to wait...I have had no time to video anything!  THis one is a bit painful to watch, and I'mnot sure if I can get it to flip from being sideways...

So now, we continue to allow Nana to gain strength and clear her lungs, help Lilly to adapt and hopefully soon wean her off of her narcotics (she'll be thrilled to go back to preschool when those drugs are no longer necessary), and await word on whatever lies ahead for Tom's career and our family.  This week was the week to register Jared for high school and Anna for middle school, so we have gone ahead and done that *just in case* we're not moving, even though the odds are that we will be elsewhere for the next school year.

Stay tuned!

Home but far from Normal

We got home Wednesday afternoon, thankful for smooth flights and a mostly happy and pain-free girl as we travelled. 

What we came home to was the hard part. 

Nana was not well at all.  I was in my house roughly 5 minutes before leaving the house again with my mom and dad and heading to the local ER.  Lilly was excited to be home, see her siblings, see the cute Bitty Baby crib that Pap Pap had built for her, and didn't even notice my departure.

Nana had tried to tough it out for just a few days too long, and was admitted straight into the ICU with a "big pneumonia."  She is getting good care now, and is doing much better. 

I am SO glad we came home Wednesday instead of coming as planned tomorrow, Friday the 18th. 

So we are happily home, getting unpacked and slowly getting back into the swing of things here. 

But we are still spending some time at a hospital bedside, praying for speedy healing and recovery for Super Nana.

I won't be blogging for awhile...much to tend to here at home. 

When I do get back on, I hope to post video of Lilly's first post-surgery steps alongside video of her walking so smoothly now.

VEPTR Procedure Wrap Up: Lessons Learned and A Week in Photos

Now that we are out of the hospital and enjoyed a MUCH better night's sleep here at Grammy's house last night, I have been reflecting on all that we have experienced and endured these past two weeks, particularly starting a week ago today with Lilly's surgery.  My pondering--in no particular order--includes the following:

• Sleep is overrated.  Especially uninterrupted sleep.  Even beds are overrated.  Sleeping on pillows on the hospital floor will suffice if necessary.
• Ditto for daily showers.  Totally overrated.
• The hospital--the place where you most need to rest following major surgery--is not the place to get that rest.
• Watching your child suffer great physical pain is very difficult to do.
• Children are amazing in their ability to trust and to adapt.
• You know you've lived in Florida too long when you are out for a run in the chilly Philly air and you still find yourself looking for gators in the water and mistaking debris on the sidewalk for snakes.
• Tag team parenting is not fun but is beginning to feel normal. 
• Missing my man at night is not something I want to get used to.  
• Family is so very valuable.  I am overwhelmed with gratitude when I think of all the help our families have provided: willing to travel thousands of miles and disrupt their own normal routines, willing to care for sick children and contract serious viruses, willing to walk my dog and transport my big kids, willing to cook and clean my toilets, willing to line up ground transportation for us travellers, willing to come and visit in the hospital despite long drives, willing to cook meals and bring presents, willing to do anything we might need without a second thought.
• Friends, church family, and good neighbors are also so valuable: I know so many of our friends and neighbors have been helping in many ways with our big kids back at home.  We are so grateful.
• Modern technology--which has allowed me to keep friends and family updated on our status and has allowed you all to send us notes of encouragement--is amazing.  I truly craved and thrived on the encouragement I received from all of your blog comments and text messages and facebook messages, and e-mails. 
• Modern medical research and technology is also amazing.  The fact that Dr. Campbell was able to take Lilly's spine, which had progressed to over 140-degrees of curvature, and in just 5-6 hours correct it to a roughly 80-degree curvature adding 3 inches to her height, simply astounds me.
• Nothing can substitute for a solid faith in our strong and mighty God.  He is so very good, and I so grateful that He is the God who hears our prayers, who knows our needs, who heals, and who is more than able to do immeasurably more than we can ask or imagine.

As we look forward to getting home tomorrow and hugging Jared and Anna and seeing Nana and Pap Pap, we are also realizing that "normal" is still quite a ways away for all of us. 

• There are many normal daily tasks that Lilly still struggles to do--and she tires easily and feels intense pain easily.  She will continue to need extra help and attention and it will be a little while before she returns to normal weekly activities like school, Cubbies, etc. 
• At the same time, I do not want to, in any way, reinforce in her any feelings of helplessness or dependency.  It will be a struggle to strike the balance between offering her compassion and assistance and encouraging her to work through her pain for her own good so that she can regain her strength, balance, and confidence.
• We are already looking ahead to her next surgery--her first VEPTR expansion surgery in which they will lengthen her rods to keep up with her growth and further straighten her spine.  We need to be able to explain to her in a way that is appropriate for her age and understanding that this will be a process that takes a lot of time.

Enough words.  Here are some photos to encapsulate our experience over these past few weeks.



And here are the before and after x-rays and and "after" photo:

Discharged and Resting at Grammy's House in New Jersey

Just a sentence tonight: we are free, staying in NJ until Wednesday, cannot wait to go hug my big kids and my mom and dad waiting fir us in FL. I hope to post a photo journal of our week at CHOP tomorrow...stay tuned.

We're Getting Closer!

More forward progress today for Lilly: after a grumpy start to her day (she was clearly DONE with this place), she managed to round a corner and exceed all expectations for post op day 4. She had her last surgical drain removed, she is walking much more steadily and increasingly independently, she is eating well and acting so much more like Lilly much of the time now. When we are within 30-45 minutes of her next dose of pain meds it becomes very apparent in her behavior that we still need the meds, but she hasn't needed any IV meds since yesterday afternoon. We are hopeful that discharge us in our near future--maybe as early as Monday. That would be SO nice! Nothing against the folks here--CHOP has been absolutely wonderful. She has awesome helpful and friendly nurses, she has great OT and PT folks working with her every day, and--get this--even the food is pretty good!

Still, hospital living can wear at you. Lilly said repeatedly this morning "I wanna' go home! It's easy ro walk at home!" As for me, I made the mistake yesterday of not taking a break from the hospital all day, and my emotional state this morning showed it. My wonderful man suggested I take some down time so I went out for a run in the chilly Philly air, had a nice shower, and got to remember that there is life outside of CHOP. A visit this afternoon from Aunt Judi and Uncle Doug also added a bright spot to our day.

So, here's hoping there won't be too many more blog posts typed on the iPhone in the dark of the hospital room!

She Must Be Getting Better

It has been a really good night's sleep--we were blessed with no roommate all night, so our only awakenings were due to Lilly's need for more pain meds at the right times. She is snoozing away as I type.

Last night, we were beginning to see some more of Lilly's typical personality: the good and the ugly. Praise God for her spunky strong will which has made her a survivor and a thriver in her 4+ years on earth. And praise Him that we are seeing her put that strong will to work in her arduous recovery process. May God graciously guide and help us as we mold and shape that strength in other areas of her behavior.

May we see more huge strides over the next few days. We all wanna' go home!

Just had to say sorry for the typos!

I just read through my last post and had to apologize. Typing these entries on my iPhone can make for done interesting spring and words when auto-correct kick in. Spelling and word choice matter to me more than it seems from recent posts! Thanks for hanging in there and reading anyway.

What a Busy Day!

Lots happened today, leaving little time for updates... Lilly's morning started early today when the orthopedic resident showed up to remove 2 of her 3 drains. Lilly was not happy with how that felt, and screamed "I wan' that man be all done! That man! That man--be all done!". It went from a cry to a command to "that man."

The rest of her day included an appointment with OT to work on some strength and coordination, a visit from Grammy and Pop Pop, an appointment with PT for more work on walking, standing, and movement, some x-rays, a visit with cousin Bif and her friend Nick who attend college nearby, some presents, more fun e-catds, and even a package in the mail from Aunt Paula. Nit to mention lots of yicky nasty medicines throughout the day.

More amazing strides forward today--while she is definitely weak and way off balance, she is walking more steps St a time and increasingly independently. We spent Lora of time in the various play rooms today--much better than sitting around in bed, don't you think? And her appetite us definitely improve g.

Dr. Campbell us really pleased with her progress and joked that even getting hit by a truck couldn't stop this girl. He's right.

Now to sleep with no roommate--at least for now. I suspect that won't last but we'll enjoy the quiet while we have it.

Praise God, and good night, dear friends!

The Effectual and Fervent Prayer of a Righteous Man Availeth Much

Just a short update tonight so I can get dome sleep while Lilly is sleeping.

What amazing strides Lilly made today! Thank you for your prayers on her behalf--our God is mighty and strong and more than able! Today, Lilly moved from taking baby steps to taking giant leaps in her recovery. It has been exciting to see her progress, and put her spunk and strong will into action when required.

The short version--she now only has her 3 drains and a pulse ox monitor attached to her. She is eating and drinking more and staying awake most of the day now. She got out of bed today, took a few steps supporting her own weight, sat in a chair leaning on a little table while we did puzzles and played games in the playroom, and made it clear many times throughout the day that she wants to go home and be back in her comfy bed.

I need to sleep, but just had to say thanks for your prayers. And thanks for all the fun e-cards! They bring a smile to her face. Today, while reading the card from her "future husband" she even giggled. Music. It is so good to see glimpses of our happy girl after so much anxiety and pain.

I also have to give kudos to my mom, my big kids at home, and especiallyy man. I cannot imagine going through all of this without you all.

One Step at a Time

So we made the big move from the PICU last night around 10pm downstairs to a regular room. In preparation for the move, they had to transfer Lilly to a different bed which was an adventure. Her new bed had an extender on it--making it suitable for someone as tall as Jared--so she looked extremely tiny in it. The extender had to go, however, when our nurses realized, on our way downstairs, that she would not fit into the elevator. It was comical to say the least as a nurse, an aide, and several housekeeping staff (along with Tom) tried to figure out how to shorten the bed. It wad a first for our nurse--so happy we got to be a part of CHOP history!

Our arrival on the floor was greeted with an unenthusiastic nurse who gave me a tour of the floor and warned me that things here would be different than upstairs--the nursing ratio is much lower and they respond to calls as they are able. So I was ready to be an ugly mama bear if I had to for my Lilly's sake.

Thankfully, that nurse went off duty shortly after our arrival and our night nurse, Kevin, was fabulous.  No mama bear necessary. Last night we got a little more sleep than our night in the PICU. Fewer alarms and interventions--coupled with a much quieter roommate who sounds just like Lilly when she whimpers and talks--made for fewer external sleep interruptions. Lilly, however, did awaken periodically needing new meds or setting off her own alarms by pulling on the various tubes on her body and dislodging her EKG leads and/or her O2 when scratching her itchies that have resulted from the morphine.. Her overnight nurse was great and really responsive. And her bed is now big enough that I was able to crawl up next to her a few times when she needed me closer than the 3 ft separation between my cot and her bed.

They will begin to wean her from the  morphine today and are switching her over to tylenol and oxycodone, which she can take orally.  She woke up acting more like herself, watched some tv, and even ate a few bites of breakfast.  A few moments ago, she asked to sit in my lap.  We decided to start by seeing if she could simply sit upright in bed.  It was painful, but she tolerated it for a few moments before wanting to lie back and falling soundly asleep.  

Baby steps in the right direction.  We'll take them, big or small. 

Slow Steady Road to Recovery

There has not been very much to report today.  We continue to be grateful for God's healing hand, for his being the God who Hears, and for sustaining us all--Lilly in her post op recovery, Tom and me as we care for her and miss our big kids at home, and Jared, Anna, and Nana back at home.  Please keep my mom in your prayers as she fights symptoms of the same virus that took Anna out of school for almost a week and kept Jared home from school Monday and Tuesday of this week.

Lilly and I had a fairly decent night's sleep--there are many noises and lights in the PICU that make sleeping difficult, and her pain levels also made sleep somewhat fitful when she was nearing time for her next "rescue" dose of morphine.  I was able to stay bedside on a little chair that folded flat into a small cot so I was close by which gave her comfort.  She was so sweet--at one point as I was checking on her whimpering, she looked at me and said "go night night, mom."  Our roommate--a little guy about 18 months old--was having a very difficult time sleeping so his crying and his parents' efforts to care for him also made it tough for us to sleep.  The little curtain between us offers only visual privacy, but no soundproofing.  I probably slept for two or three 60-90 minute blocks between 10pm and 6am.  By 6am, it was clear that the PICU was awakening for the morning--lights turning on, residents and attendings making rounds, nurses checking vitals, etc. 

Lilly has spent today in and out of sleep, showing little interest in food or any other activities (even TV or books).  Thankfully she is drinking lots of fluids, and we are hopeful that she will get a little bit of an appetitie when she feels less sleepy.  She has had wonderful nurses who have been great about staying ahead of her pain curve by dosing her with "rescue" doses of morphine every 3 hours, supplementing a steady dose she is getting from a pump via IV.  We are hoping that soon she will be able to manage pain via analgesics rather than sedatives so that she is more alert and more interested in eating and moving.  It is hard to see her in so much pain and not be able to take it from her. 

Forward steps today included removal of her arterial line in her right hand and removal of her foley catheter.  Two tubes down, several to go.  She still has an oxygen line in her nose, a dual IV in her left hand, 3 drains from her back to drain fluids and blood from the surgical site, a blood pressure cuff on her ankle, and a pulse ox monitor on her hand, so there are plenty of tubes and wires still criss-crossing her little body and throughout her bed. But each removal is a little victory in this road of recovery.

She gave a slight smile--the only emotion other than pain she has shown all day--when she received a few e-cards from friends back in Florida--thanks Amanda, Sarah, and Nicole!  We have propped those notes up in her bed so she can see them when she opens her eyes. 

The attending physicians are planning to move her to a regular room either later today or tomorrow morning, depending on how she's doing and where beds might open up.  CHOP is absolutely full--so many sick little ones. 

Dr. Campbell made his rounds earlier today and said that, at about the 24 hour mark, she is free to try to sit up and even stand and walk if she feels up to it.  That would be later this afternoon/evening.  Based on what we are seeing today, it may be another day or so before she is inclined to get out of bed--even though she claims she wants to "get up," even the slightest movements of her torso seem to cause her great amounts of pain. Not to mention that it might be difficult to do so with many tubes and drains hanging from her body.  Dr. Campbell told us that muscle spasms are very common in VEPTR kids because the muscles are being stretched and recruited in new ways now.  Not to mention that her bones and incisions are sore.  So it will be a balance of encouraging her to move despite the pain, and allowing her to rest and treating the pain as needed.

I suspect that once she is able to manage pain without the sleepiness of the morphine, she'll start feeling more like herself and more inclined to eat and try moving. 

Please continue to pray for her pain tolerance and pain levels, for her lungs to be protected from fluids, for her to begin to have an appetite again, for her digestive tract (likely slowed down due to the meds) to kick back in once she starts eating, and for her peace of mind.  She is clearly agitated that we are here and wants to be done with this place. 

We are thankful for the great staff and resources here.  I am currently sitting at a computer in a family library where there are also some sleeping rooms, showers, and laundry facilities available for in-patient families.  Earlier today, when Tom joined us after spending the night at the RMcD House, I slipped away for a short nap, a fast run on a treadmill, and a warm shower back at the house.  I also picked up some of our favorite breakfast and snack items from the local "Fresh Grocer" to have on hand here at the hospital.

All for now.  Thanks for reading.   

What a Mighty God We Serve

It is now more than 12 hours since we arrived at CHOP for Lilly's surgical check in.  Although it has been an incredibly. long day--we arrived here at 6am, waited in her pre op room for about 5 hours as they sorted out a bed shortage, then sat in the surgery waiting room with dozens of other families for about 6 1/2 hours, getting updates from a very nice nurse named Don every hour or so, and then waited to see her following recovery for about 30-45 minutes--the time has honestly gone very quickly.  The wonders of modern technology and the many facebook messages, e-mails, and text messages from friends and loved ones helped to bolster our faith and our mood, and our strong and mighty God graciously gave us peace through every phase of the day. 

For me, the hardest part of the day was when I suited up and went back with Lilly to the OR so I could be with her when they anesthetized her.  They opted not to give her versed (commonly referred to as "happy juice" because it relaxes the patient and acts as an amnesiac, making separation from mom and dad easier and easing anxieties) because of her lingering cough and because we knew, based on our experience in Birmingham, that having mama by her side was much more effective against anxiety than any drug.  She was indeed very anxious all morning as we waited (she fell asleep in my arms more as a defense mechanism than due to sleepiness or fatigue), and even more so as they administered the gas to put her under.  She fought the anesthesia as long as she could, and then fell into her sleep.  As I walked back to where Tom was waiting for me, my heart was pounding.

After our long wait, Dr. Campbell sat and reviewed with us how things went once has was finished.  He inserted 3 separate VEPTRs, one on each side of her ribcage extending from rib to pelvis, and one between two ribs on her left (formerly concave) side.  She now measure 3" taller, and her curvature was reduced from 130+ degrees to somewhere in the roughly 50-60 degree range.  Her chest wall is no longer collapsed on the left side, so even lying in bed she looks different.  She needed one unit of blood, but came off of the ventilator almost immediately post op.  Dr. Campbell was really happy with the outcome and we are so grateful for his research and know-how that led to this device and this procedure. 

So now we are here in her PICU room, where she is in and out of fitful sleep.  She has morphine.and tylenol. for pain control, and her first words upon awakening were "I want to get up" and "I want to go home."  Knowing this spunky girl, it won't be too long before we are doing both of those things.

I will spend the night by her side in the PICU, while Tom heads back to the RMcDH.  I am so thankful that one of us gets to stay with her around the clock.  I do not anticipate getting very much sleep, but for now that doesan't even matter.

Thanks to you, dear family and friends, for your prayers today and your continued prayers for her recovery.

6:15 am Show Time

Another full day at CHOP: X-rays, consult with Dr. Campbell, CT scan, and the final clearance from the anesthesia department to proceed tomorrow. We are winding down our night at the Ronald McDonald House and will be crawling unto bed soon. Lilly is scheduled to arrive at 6:15am; the surgery itself will take 5-6 hours.

My memory verse right now is a fitting way to end this evening: "I have trusted in your steadfast love, my heart will rejoice in your salvation. I will sing to the Lord for He has dealt bountifully with me." Psalm 13:5-6

On our Way Back to Philadelphia

We spent a relaxing weekend in New Jersey with Tom's family. Saturday Lilly and I joined Auntie Em and cousin Peter for "An Introduction to the Symphony for Kids.". It was a concert featuring several amazingly talented teen musicians, accompanied by the Hunterdon County Symphony Orchestra. Lilly found it quite relaxing and took a nice snooze. We enjoyed dinner at Uncle Doug and Aunt Judi and cousin Tanya's house. On Sunday, we worshipped with them and then spent a very quiet day at Grsmmy's house until everyone arrived for Sunday dinner and Superbowl viewing (good try, Steelers).

While it was fun to see everyone, the reason for our visit has been hanging over me...and, I suspect, over Lilly as well. As we say goodbye to each family member, extra tight squeezes and promises of prayer are both comforting and indicative of the seriousness of the next few days.

As we are now driving back to Philly to see Dr. Campbell--who will make the final call as to whether to proceed despite Lilly's cough--and undergo some new x-rays, Lilly is contemplative. We have used very basic terminology to explain why we are here: "your back is shaped like an "S", and it needs to be shaped like an "I." That has tended to satisfy her. But moments ago she asked "why does my S need to be an I?" Good question. So we tried to explain how it will allow her lungs and heart to work better as she grows. To which she replied, after some thought, "I wish I was born with an I."

I, too, wish she didn't have to go through this. This is really what it boils down to. How differently everything might be had Lilly been born with a straight spine. She might not even be ours, had that been the case. But God, in His sovereignty, has allowed all of these things---a crooked spine, an abandoned baby, an adoptive family, an amazing doctor, supportive family and friends--to work together for our good and His glory. May He get much glory from the things that are to take place in the days ahead.

Contact Info at CHOP

Several of you have asked for a mailing address to send cards to Lilly.  If you would like to send her an e-card when she is an inpatient (from 3/8 until 7-10 days later), you can follow this link:  http://www.chop.edu/ecards/ecards.cfm

For USPS mail:

Child's full name and room number (don't know room # yet...will let you know)
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399

Tom's folks, who can deliver things as well:

Lilly Cantilina
c/o Stan and Helene Cantilina
21 John Lelo Ave
Milford, NJ 08848

Slick and Sleeting Saturday

Apologies for not updating sooner.  I thought I had managed to update the blog from my iPhone from the hospital yesterday, but apparently that update is floating around somewhere in cyberspace. 

Although yesterday was a long and full day at CHOP, we didn't get nearly as much accomplished as was originally planned.  A series of poor coordination between departments, emergencies popping up, and long delays in various departments meant that, despite being at CHOP for about 7 hours, we really only managed to have  Lilly pre-screened for anaesthesia and undergo her MRI.  Not that those are minor things, mind you, but it was only half of what we were planning on taking care of on Friday.  So the consult with Dr. Campbell--whom we ran into in a hallway and got to at least say hello--and Lilly's final pre-op X-rays have been rescheduled for Monday.  There was some question in the morning as to whether they would proceed with her MRI due to her lingering cough, but the anaesthesia nurse practictioner gave her a green light after listening to her lungs and pronouncing them clear. 

The MRI department was running way behind, so much of our day was spent in the waiting room, entertaining Lilly who was not permitted to eat after 10pm or drink anything after 9am.  She wasn't taken back for her MRI until close to 1pm, so we were all hungry and thirsty by then.  She did well, however, despite her obvious anxiety about the anesthesia ("I no wanna' go night night") and the MRI.  The scan too about 90 minutes, and then we spent about 45 minutes in recovery as she slowly woke up and shook off the grogginess.

A brisk walk through the nippy winter air from CHOP back to the Ronald McDonald (RMcDH) house felt good to Tom and me after sitting in the hospital all day.

We get Lilly rehydrated and fed some ramen noodles at the RMcDH while we waited for Grammy and Pop Pop to arrive and bring us back up to their house in New Jersey for the weekend.  They braved Philly rush hour trafficin Uncle Jer Jer and AUntie Em's van to get us, and we were thankful for its DVD player for the return drive north last night.

So, here we are, safely in New Jersey, hanging out with Grammy, Pop Pop, Auntie Em, Uncle Jer Jer, and cousins Peter and Naomi for the weekend.  The ground is covered with about 18" of ice-slicked snow and it has been sleeting all morning.  If the roads are clear enough, we may venture to a children's symphony this afternoon, and have dinner at Aunt Judi and Uncle Doug's house tonight.  For Lilly, who is having a great time playing with her cousins and all their toys, it is a little weird to be here without Anna and Jared (actually, it's weird for Tom and me, too!).

Thanks for reading and for your prayers!

Safely in Philly with Lilly

It has been quite a day--travel days always are--but Lilly and I are safely in Philly, hanging out in the playroom of the Ronald McDonald House after a lovely Chinese New Year's dinner provided by volunteers here. I am so grateful for the RMcDH! Tom is still en route as I type, after his flight out of Atlanta was cancelled. Thankfully, he is able to make it in late tonight.

Tomorrow will be an early and full morning, and Lilly starts fasting as of 11pm tonight. Tomorrow begins with a consult in anesthesia, followed by a consult with Dr. Campbell, and then an MRI under general anesthesia. The caveat is Lilly's nasty lingering cough...they may opt to postpone the MRI if the are concerned about her cough and breathing. We shall see in the morning.

I have to mention that we have the most wonderful friends! Lilly has been showered with love, travel toys, snacks, cuddly plush toys, crayons, and so many other thoughtful and sweet tokens of love. We are truly blessed.


Meanwhile, Nana is caring for Anna whose tummy continues to ail her...hoping that both physically and emotionally she is feeling perky again soon. I suspect that, despite our efforts to keep life as normal as possible, she is anxious.

Nana managed to troubleshoot several tv and computer issues on her own today--GO NANA! That will be an even bigger challenge than illnesses I suspect.

Jared is rolling along just fine, happy as longas he still gets to see his friends and someone feeds him.

Thanks for all the prayers being offered for Lilly! And thanks for reading.

Jared appears

Ready or not...

Ready or not, it's almost time to go. Nana's crash course in Cantilina Chaos is almost complete and she's ready to go solo (keeping her fingers crossed that the computers and TV operate properly for her without Tom nearby. Computers fear Tom; all others they mock.) Too bad Anna is still throwing up... Praying for restful and restorative sleep for all.

Nana has Arrived

Well, the excitement is beginning.  Despite freezing rain and sleet in Pittsburgh this morning, my mom made it down today with no problems (she got her workout making her quick connection in Charlotte).  We spent some time reviewing my obsessive compulsive 6 pages thorough outline of the big kids' schedules for the week (after I had typed them up and saw our weekly schedule in black and white I realized that we are, indeed, insane.  Each and every week, simple insanity) and had tutorials on how to turn on the TV (we only have, at last count, 6 or so different remotes?), log onto the computer, and use our fancy dancy coffeemaker.  We talked about which big kid would walk and feed the dog when, and it was agreed that Jared will NOT be climbing trees while Mom and Dad are away.  At LIlly's request, Nana ("only Nana, not you, MOm) tucked in Anna and Lilly (both sleeping in LIlly's room for now) for bed tonight. 

Praying that Lilly has a better night than she has had recently--4 nights straight of fevers and violent coughing have made for some poor sleeping for her and Tom and me.  On top of that, Anna came home from school today with tummy issues, so poor Nana has multiple germs to combat while she's here.  Prayers for good health all around are welcomed!

Tomorrow I will finish the packing and a few errands, and Nana will continue her crash course in Cantilina Chaos.

Thursday we are Philadelphia bound.