Easter Reflections

It is Easter Sunday.  This has been a Lenten season that I will never forget and has been unlike any other in my 33 years of life.  As is customary at the beginning of Lent, I contemplated what I should sacrifice for the 40 days ahead.  Being pregnant and having already experienced a difficult couple of months with Alli, I had sort of made my peace with the fact that maybe I was already doing enough for Lent and I would pick up on the additional sacrifice next year.  Yikes!  Note to self: pick your own Lenten sacrifice, lest a more significant one will be chosen for you!

As I sat in mass this morning, with my grandma, I was filled with many different emotions.  I was disappointed in having missed out on several high points of the Lenten season.  I was grateful for Alli's good report this morning during rounds.  It felt like I was trying to catch up on the entire season in the hour I was there.  I cried at moments (this is actually not unusual for me - for whatever reason, I can cry in church at the drop of a hat - or a good hymn.  It is always the music that gets me.).  One moment that I remember being especially tearful was in the opening hymn.  I have included the lyrics below:

"But the pains which he endured, Alleluia!
Our salvation have procured; Alleluia!
Now above the sky he’s king, Alleluia!
Where the angels ever sing. Alleluia!"

And there it was.  For a moment I couldn't breathe.  I'm not going to draw connections between what we have endured with Alli and the Way of Cross (for my non-Christian/Catholic followers - the Way of the Cross refers to the events leading up to and including Jesus' crucifixion and subsequent resurrection), however, she has suffered over the past (almost) six weeks and we (Jason and I) have watched and allowed this to happen and it has been painful.  Deeply painful.  So, if not the parallel, why the emotion at this particular verse?  Jesus suffered and He has allowed Alli to suffer and He is with us guiding us through our own suffering.  It was a moment of humility.  There is nothing worse than watching your child suffer, but I can only pray that as we endure this we are working out our own salvation according to God's plan for us.   

This afternoon I made my daily trip to see Alli in the hospital.  They were finishing up her respiratory treatments as I arrived.  She doesn't like them and her protests are a good sign.  She is getting some feistiness back!  She managed to cough a few times following her treatment - this is excellent, as it helps her to clear her lungs.  Before I left, they offered to let me hold her for a few minutes.  I was anxious to have her in my lap.  It was nice to be able to hold her and comfort her for a few minutes.  A wonderful Easter gift.

We spent the rest of the day celebrating Easter at home.  Jason joined us for dinner and the Easter bunny made a late drop off at our house while we were eating.  So, he stayed a little longer while Samantha opened her goodies.  All things considered, it has been a nice holiday.  My mom prepared a fabulous dinner and we had a nice brunch earlier this morning.  We look forward to future holidays to be spent with our whole family.  Below are some pictures from the weekend.  I hope you enjoy them!

I apologize for the delay between posts. It isn't because of Joshua. I just wanted to wait until we had something concrete to post. Alli was extubated earlier this week. They had hoped she would be able to manage on a high flow nasal cannula, however she needs the additional pressure support from the bi-pap. So, she has been managing on the bi-pap. She is slowly recovering, but has shifting atelactasis in her lungs. We clear one section and the next day there is another section to clear. So, it is an exercise of patience. The highlight of the week was that Jason was able to hold Alli for the first time in 5 weeks yesterday. There is a commemorative picture on my Facebook page.

Today we look forward to the arrival of Grandma Culos (GiGi). She is making the trip from Detroit to see the girls and Josh. The weather is warming up just in time for her arrival. It should be close to 70 the next couple of days. We are definitely ready for some nicer weather.

Quick Update

Quick Update:  Alli's gj button was placed yesterday and they were able to replace the bone in her skull this morning.  She is recovering in CICU.  They will continue to try to wean the ventilator over the weekend and she will hopefully be off by early next week.  Then we will be on to rehab!

Alli is well loved in the CICU.  We had many visitors upon her arrival.  They take great care of her (and us!).

Perspective

It is interesting how my perspective has changed since Jason and I have switched roles.  He has assumed the role, as you know, of Alli's primary caregiver these past few weeks and I have assumed the role of the primary care taker at the house.  When Alli and I have stayed in the hospital during previous visits it has been difficult, at times, for me to understand Jason's sense of urgency about getting Alli and me back home.  As the one that was deep in conversations with doctors, therapists, etc. I was well informed on the plan and details and had a clear vision of what our expected outcomes were.  I was living the ups and downs in person and trying to keep everyone focused on Alli recovering at her own pace so that we would hopefully all spend more time at home together when she was ready.  Now that the roles have reversed, I find myself anxious for Jason and Alli to be home with us.  I am not as involved in the details and daily conversations with doctors and therapists and am now beginning to appreciate the world more from Jason's former point of view.

I have been to visit Alli each of the last three days.  I am only able to stay an hour at a time because it is approx. a 30 minute drive each way and I need to be at the house to feed Josh (yes, eventually I will be able to pump, but that is not ideal right now).  So, my view of Alli is limited.  I don't have the benefit of seeing her ups and downs throughout the day.  I get her for however she is for that hour.  On Monday, it was the first time I had seen her since they took the bandages off of her head.  She has about 50 staples in the shape of a horse shoe from the center of her head to the back and around behind her ear.  It is painful to look at.  It makes me ache thinking about what that feels like and I am hopeful that the medication they are giving her for pain and sedation are doing their job, because she can't always tell us when she's uncomfortable.  On Tuesday when I visited her, from my perspective she looked uncomfortable.  She was moving a good bit, but to me her movements seemed reminiscent of her infantile spasms and I grew immediately concerned that we were/are headed back down the road of trying to get those under control.  Over the course of those same two days and the several days prior, Jason's perspective of Alli was much different.  He had seen her work with the PT and make more deliberate movements.  He sees her bright and alert with the doctors during morning rounds.  We are seeing different things and that, in and of itself, can cause issues.  Jason has the full picture of watching her not move for days at a time, relieved to see her moving her limbs independently.  I have the limited picture of wondering what I am seeing in the movements she is making.  It creates frustration because Jason's view and perspective is one of satisfaction and accomplishment, having seen the full picture.  My view and perspective is one of concern because I don't want to go back and revisit another relapse of spasms.  It doesn't ignore that she has made progress, but I am cautious about how hopeful I get about what I am seeing because I want her to be able to move beyond all of this and be able to grow and get stronger and develop.  That will be the key to keeping her from these situations in the future.  So, we are left to reconcile our views.  It can be difficult to agree that probably both of us are right in some respect.

Today was full of promising news.  Alli will have her GJ button placed by interventional radiology tomorrow at noon.  That means we will be able to remove the NJ tube from her nose (yeah!!).  Her new button will have a port that goes to her intestine and a port that goes to her stomach.  Her meds will be given via the port to her stomach, while her food will be fed directly in to the intestine.  This helps to minimize reflux and ensure she has appropriate absorption of her medicine.  She had another CT scan today and the swelling in her head is diminished to the point where the neurosurgeon feels comfortable reattaching the piece of her skull that was removed for surgery.  Therefore, he will reattach her piece of skull on Friday.  They felt this would be a good option for her as it will prevent her from having to be re-intubated for this procedure in the future.  It will also ensure that she doesn't need to be transferred back to Egleston for that procedure once she starts inpatient rehab at Scottish Rite.  So, assuming all goes well, Alli will have her procedure Friday and we'll hopefully be able to extubate her some time over the weekend.  Once she has been extubated she should be able to be transferred over to the inpatient rehab unit at Scottish Rite.

On another note - somewhat unrelated - tomorrow is World Down Syndrome Day (March 21 or 3/21).  The date was picked because of the association with the 3 copies of the 21st chromosome that are present in people with Down Syndrome (trisomy 21).  The day is meant to bring awareness to and celebrate this very special group of people.  So, if you don't mind, maybe say a little prayer for Alli and her buddies, and those that care for them.  Their journey is different from others, but no less enjoyable, and full of hope, strength, determination, and tremendous love.

Continued Improvement

Alli had her CT Scan this morning.  The neurosurgeon confirmed that there was no fluid and was able to remove the drain from her head.  He also commented that the scan looked as they expected, which is good.  They didn't find evidence of a stroke.  We will follow up at some point with the MRI to take a closer look at the brain to determine whether or not there is any brain damage.

They have weaned Alli off of her IV medications and they removed her arterial line.  Her room is much emptier now that they have cleared our her pumps.

When the respiratory therapist suctioned Alli this morning she coughed twice.  This is significant because it indicates that she has a gag reflex.

So, overall, things continue to improve.  They continue to work with her on weaning from the ventilator.  They have also started to wean down her methodone and valium.

Update March 15

Alli has been making steady progress over the past couple of days.  She has been weaned off of the norepinephrine (blood pressure medicine) and morphine.  She is now on a combination of valium and methadone to deal with pain and discomfort.  The valium has a shorter half life, therefore it should in theory be easier for her to wake up.  The methodone is to help her with pain and relieve her of any withdrawal symptoms she might have from coming off of the morphine and other sedatives.

She is still working on CPAP trials.  The CPAP trials are done prior to extubation to assess the patient's ability to breathe on his or her own.  The CPAP allows the patient to initiate the breath and then provides assistance in the form of positive pressure to help keep the lungs open and sustain the breath.  Alli is doing a good job of initiating the breathing, however, she still needs a good amount of positive pressure support to keep her lungs open.  So, as the trials continue, they will hopefully be able to wean the pressure back down.  

Sometime this weekend Alli will have a CT scan to assess the "big picture" view of her brain.  This will help the neurosurgeon determine whether or not the drain can be removed from her skull.  The drain was put in as part of the surgery last weekend to help drain off any excess fluid that would create additional pressure in her skull.  The CT Scan will show whether or not there is any additional fluid left to drain, as well as give them an idea as to whether or not there is other damage to the brain.  At some point, she will likely have an MRI that will give them a more clear picture regarding potential brain damage, but she is not able to withstand the length of the MRI study right now, so we'll have to settle for the CT scan.

They took the EEG leeds off yesterday.  Alli had gone approximately 60 hours without seizure activity, therefore, they felt comfortable that they could end the study.  I had the opportunity to visit her yesterday afternoon and admire the more normal looking EEG pattern.  After a year of studying EEG screens, I now have an idea of what a "clean" EEG should look like.  I'm not sure whether or not this means her EEG will stay as it looked yesterday, but I could still appreciate the calm in her brain for the moment.

Alli has been gradually waking up from the sedation.  She has been opening her eyes and making more purposeful movements with her body.  The physical therapist spent some time working with her today to help wake up her senses and assist her with movement.

We are so grateful for the strides she is making and hopeful that her progress continues throughout the weekend.

My dad heads back to Michigan tomorrow.  He will be missed by everyone here, but especially Samantha.  She loves her walks with Grandpa John and their outings to the park and other places around town.  We look forward to him coming back soon with Gigi (Grandma Culos)!

Have to run and get Josh.  More updates to come!

Extremes

As you can imagine there is an incredible dichotomy of emotions in our household.  We have the obvious joy associated with everything involved in having a new baby and of course, great concern associated with Alli.  When we arrived home yesterday and I took Josh upstairs to nurse for the first time, I was over come with emotion.  Each of the children has been nursed in this chair.  The last to be nursed here was obviously Alli.  As I sat with Josh, I was flooded with memories of the time I spent with Alli in this chair her first few days home from the hospital, so uncertain of what her future would hold.  So many prayers were said with her in that corner of the room.  As her medical status has become more and more complicated, we have spent less and less time in that chair, and less and less time praying about what her future holds.  Kind of ironic.  I told my mom last night, I feel somewhat suspended in time, just waiting to see what will happen.  I still make a point to attend weekly mass, but even there find myself just sitting there taking in what is going on around me, but not really knowing what to pray for.  I have come to a point where I feel like we are accepting whatever challenge we are given, but, then I wonder, if I was spending more time praying for a different outcome, would things have evolved, or be evolving differently with her?  Maybe.  But, then I think, of course God knows that this is not what I want for my daughter or the rest of our family - to see her hooked up on a ventilator, fed by tubes, with a catheter draining fluid from her brain - to only have a couple of hours together every day welcoming Josh in to our family - always knowing that there is one member of our family that is noticeably absent from first pictures and first times together.  So, why ask.  I believe He knows what He is doing and some day this will all come together and we'll understand why it had to happen this way.

Before you think I am spending all of my days wallowing, be assured, there is great joy.  While I can't deny my moments of sadness, I also can't deny the moments of happiness.  Every time I look at Josh's precious face and I see how excited Samantha is to hold him and be with him, I know there is a great purpose to his role in our family.  He smiles.  He touches my hand when he's nursing.  He makes a funny fish looking face when he's ready to eat and he's searching for something in mid air to latch on to.  He occasionally babbles.  He is easy to console (don't confuse this with a lack of sleepless nights - there are still plenty of those :) ).  He lives up every day to the meaning of his name - savior.  He is starting to have more awake time during the day and I look forward to the moments when he looks up at me, or Jason, or Samantha with his bright blue eyes.  I am so happy we have him.

Alli continues to recover from surgery.  As of this morning, she went 25 hours without seizure activity. Therefore, they started her on a "sedation holiday."  They turned off her ativan to see how she would respond.  Jason reported that she almost instantaneously twitched her feet and hands.  She seems to have tolerated her "holiday" well.  They made some adjustments on the catheter in her head this morning and it is draining better.  The neurosurgeon told Jason in rounds this morning that he is pleased, so far, with the progress she is making.  From his perspective, her next step before putting her piece of skull back in, will be to send her to inpatient rehab to get a little bit stronger.  From a ventilator perspective, since coming off of the ativan, she is consistently breathing over the ventilator settings, which are as low as they will take them at this point.  Her next step from a breathing perspective will be to extubate her, once they see she is awake and capable of breathing on her own.  So now, as we continue to reduce her sedation level, we are waiting to see how she wakes up, what her level of responsiveness is, etc.  All of that will determine extubation, possible transfer to rehab, etc.  Jason has done an amazing job of managing her care while I have been in the hospital and at home.  He spends every night at the hospital, participates in rounds, follows up with each of the specialists daily, and just, in general, has been an amazing dad and husband.  He is home for dinner at night and makes sure to spend some time with Samantha before he heads back to the hospital.  He is amazing.  I am sure he wishes he was spending more time at home with Josh these days and know that he too looks forward to  our whole family being back together under one roof.

Samantha is overjoyed with Josh.  She races up the stairs after school to see him and kiss him on the head.  She takes extra care to be quiet when she is getting ready for school in the morning, so as not to wake him (or me :) ).  She is so excited to be able to play with him and to help take care of him.  She has also been enjoying her quality time with nanny and Grandpa John.  She has taken to having "sleepovers" with them while they are here.  She has a blow up mattress that is set up downstairs and she stays with them at night.  Grandpa John bought her a couple of kites and they have been to the park a few times to fly them together.  I am happy to be home spending more time with her.  She has done amazingly well given the amount of time Jason and I have had to spend away with Alli and the new baby.  She really is a trooper.

Thank you for all of your continued prayers and support.  We have received many delicious meals over the past few days and are so grateful to everyone who has offered their support to us.  Below are some pictures of Josh and Samantha.  Enjoy!


Ready to go home...

 What is with these people!  I'm ready to get the heck out of here!

So excited to hold her little brother!

 My sweet girl...

 More baby kisses :)

Alli Post Surgery Day 1

Alli is still heavily sedated following surgery.  They tried to wean the ativan earlier today, but she started to show some increased seizure activity.  Therefore they turned the medicine back up to the previous dosage.  It is not uncommon to have seizures following these types of incidents.  Alli's hematoma was on the left side of the brain, therefore the seizures she is experiencing on the right side of her body lead the doctors to believe that they are directly related.  At this time they can not say definitively whether or not that activity will stop permanently.  Only time will tell.  Her respiratory status has been stable and the most recent ultrasound of her leg showed that the clot was no longer there.  So, it is a waiting game to see when they will be able to wake her up and how she does post sedation.  The plan right now is to give her another 24-36 hours to rest and then try to wean the sedation again.

Good Therapy

I thought I would share some happy pictures from the weekend.

Samantha anxiously waiting to meet Josh...

First picture together...

First kisses...

Grammie with Josh

Grandpa John with Josh

Josh 3 days old

Already a charmer...

Josh with the crib sign made by Alli's nurse in the CICU

Update March 10, 2013

Let's see, where did we leave off?  The birth of Joshua Grant.  Jason and I made a quick trip to Egleston on Friday morning to participate in rounds with Alli's care team in the CICU.  Once we finished, we headed over to Piedmont to welcome our new bundle of joy in to the world.  Joshua was born via c-section at 12:25 pm.  He weighed 7 lbs 15 oz and was 20.5 inches long.  As is sometimes the case with c-section births Joshua took a big gulp of amniotic fluid on his way out and needed some time to clear it out of his lungs.  So, he spent some time hanging out in the transitional nursery until he was able to clear it out and breathe more normally.  He has been in the room with me ever since.  We have been doing a lot of sleeping and eating.  My mom has been staying with us at night and has been a great help in getting Joshua settled and back to sleep after nursing.  Samantha has been able to visit and hold Josh every day.  She corrects anyone who calls him by a name other than Joshua.  It is pretty cute. Below is a video of her holding him for the first time.

Alli has been well cared for at Egleston.  Jason has been going back and forth between the hospitals to spend time with me and Josh, as well as Alli.  Things took a turn for her today.  We had hoped she would be able to be extubated, however, they have been struggling to regulate her hemoglobin and hematocrit levels.  After trying a number of therapies they did a CT Scan today and found a hematoma in her brain.  Jason called me to report the finding and to let me know that she needed surgery right away.  They took her back this afternoon and she made it through the surgery.  They were able to remove the clot as well as to cauterize some other areas in the brain that were bleeding.  The hematoma was likely caused by the heparin they gave her to help with the blood clot in her leg.  They will now be monitoring her in the PICU instead of the CICU.  She will be followed by the neurosurgeon and they will continue to consult with cardiology regarding the treatments she was receiving in the CICU.  The neurosurgeon feels confident that she could make a good recovery.  Please say some extra prayers for her over the coming days.  They removed a piece of her skull to help with the swelling.  It will be reattached once they feel confident that the swelling is no longer an issue.

Everyone else has been doing fine.  I am recovering from surgery.  3 surgeries in 3.5 years has definitely taken its toll and this one has been a little slower, but I am feeling stronger every day.  My mom and dad have been a huge help with Samantha and keeping things together at the house.  Linda went back to Miami today, before the situation with Alli arose.  It was so nice to have her here when Josh was born and she was able to spend some quality time with Samantha and Alli throughout the week.

We will keep you posted on Alli's status as it continues to evolve.  Thanks for all of the extra prayers and support!

Warm Snuggles

Today is a day that I have not looked forward to since we brought Alli back to the hospital.  On the one hand, I know she is in good hands with the doctors and nurses in the CICU.  On the other hand, I have been the constant in her medical care since she was born and it is difficult to relinquish that role to someone else, even for just a short period of time.  I actively participate in her care, even when she is in the hospital, and it makes me nervous to not be part of morning rounds and here to observe what goes on throughout the day, especially since this visit has been the most volatile.  Nonetheless,  I can't be in two places at once, and so we'll move forward and work together, and Jason will assume that role starting tomorrow.

This afternoon, our nurse and doctors agreed that I could spend some time holding Alli.  So, after her afternoon CPAP trial, the nurse and 2 respiratory therapists helped get Alli out of bed and she snuggled on my chest for almost 2 hours.  It was the one thing I wanted to make sure happened before I left her and it meant so much that they worked so hard to make it happen.  It was no small feat getting her in and out of bed with all of her various lines and tubes.  It was so peaceful sitting there with her while she slept on my shoulder.

In general, today was just an ok day for her.  She continues to progress through the CPAP trials, but they are having a hard time weaning her off of the dopamine (helps to regulate her blood pressure) and some of her other levels have been difficult to regulate.  She also spiked a fever tonight that they are trying to bring down with tylenol.  She also hasn't fully woken up.  She has moments of awake time and movement, but it is taking a long time for the sedative to work its way out of her system.

Earlier today I was able to spend some quality time with Samanatha.  It has been taking a long time for the CICU team to get through morning rounds, so after we finished up Alli's rounds, I went home to see what SJ was up to.  We read some books, did some puzzles, and had a lunch date at Panera (she - who am I kidding - we like the Macaroni and Cheese).  I was happy to have some alone time with her before the baby comes.

Our little guy arrives around noon tomorrow.  He has been snuggled, squished, and smothered by both of his sisters over the past 9 months.  I imagine he'll have a few things to say about it once he arrives.  Samantha has been talking to him periodically.  She calls him 'little man' and has introduced herself to him many times.  They have very sweet conversations.  She is so excited to meet him...as are the rest of us!  We are excited to introduce him to everyone tomorrow!

Goodnight!

Beads of Courage

Alli has been collecting beads since she was first admitted to the CICU at Egleston in November of 2011.  Each bead represents a medical challenge she has had to overcome, primarily cardiac related.  She has beads for everything from an overnight stay in the hospital to needle sticks to her open heart surgery.  As of yesterday she has earned over 300 beads primarily from her cardiac admissions.  That does not count her PICU stays.  When I get the chance, I will post a picture of her beads.  Sometimes I pass the time in her hospital room by arranging and rearranging them.  Someday they will help us tell her, and others, the story of what she has medically endured over the course of her life.

She continues to make steady progress.  Last night they did their first CPAP trial to determine how well her lungs function without the assistance of the ventilator.  She will continue to have these trials over the course of the next 24 hours.  The objective is two fold - 1. to restrengthen the lungs to be able to breathe on their own and 2. to determine her level of readiness for extubation. 

The physical therapist came by for a visit yesterday afternoon and is working with Alli on stretching and range of motion.  She will continue to make visits during our stay to help Alli get back on track from a PT perspective.

The plan for today is to remove her chest tube, continue CPAP trials, and adjust her formula to be less calorically dense, but maintain the same level of vitamins and minerals.

Slow and steady

Alli had a relatively uneventful day yesterday.  Jason's mom flew in from Miami and was able to visit with Alli for a brief period of time before she joined my parents at our house.  They turned off Alli's paralytic around noon yesterday.  By the time we left for dinner, around 6:00, she was starting to respond to stimulation.  We saw her feet move and she was starting to lightly grasp my finger when I put it in to her palm.  As her body continues to wake up we will see how she reacts.  It isn't uncommon for children, both consciously and subconsciously, to fight the ventilator.  If that happens, then there is an additional sedative they can give her to lessen the impact.  Ultimately she will need to demonstrate that she can breathe over the ventilator, so they have to be careful not to over medicate.  It is a delicate balance.  They made some additional progress on the ventilator settings yesterday and started to wean her off of the nitric oxide.  Her feeds continue to gradually increase by 5 mL per hour.  She is now receiving 20 mL per hour via her nj tube.  Yesterday's chest xray showed improvement of her pneumothorax, therefore they were able to start vest treatments every four hours to keep the secretions in her lungs loose.  Her right side continues to show some haziness.  They are monitoring that and making sure to suction what they can.  Otherwise, it may just be some atelectasis that needs to resolve.  Atelectasis can be caused by mucus plugs in the lungs.  The pulmonologist felt that there were likely some plugs deep in her lungs that he wasn't able to get with bronchoscopy.  So, continued respiratory therapy (vest treatments) should help to loosen that up so that the lung can more fully expand.  We hope to see these signs of improvement continue each day.  The process of weaning from the ventilator can be very complicated, therefore we expect there will be some setbacks along the way.  Her most recent lung and urine cultures show that her bacterial infections have cleared.  So, it is a matter of the rhinovirus settling down and letting her lungs heal as much as possible at this point.

Progress Continues...

Today was a good day for Alli.  Her sats have been in the 90's all day and her other vital signs have been more or less stable.  They were able to wean her epinephrine down to zero and are working on weaning her dopamine.  She is extraordinarily sensitive, so they have been up and down on the dopamine throughout the day.  They have started to adjust the settings down on her ventilator.  So far she is tolerating the changes well.  They started her on feeds today at 5 mL per hour and will slowly increase to eventually get her to 35 mL per hour.  Since they are feeding her directly in to the intestine they have to feed her at a much slower rate.  We are very encouraged by her progress to this point and are looking forward to seeing it continue through the night.

Good night!

Playing the odds

With great risk comes great reward.  Today we faced, by far, one of the most difficult decisions a parent will ever have to make.  Alli's condition has been progressively deteriorating over the course of the week.  Nothing has been working.  So, today they presented us with our final option, a bronchoscopy.  A bronchoscopy is basically a deep cleaning from the inside of her lungs.  They put a scope in her breathing tube that has suction attached to it and they insert it in to the lungs and attempt to break up secretions.  There was a good chance, based on Alli's status immediately prior to the procedure, that she wouldn't tolerate it and we would be out of options at that point.  We decided to move forward, as we wanted to buy her as much time as possible to get over her various viruses and infections, and it was becoming clear that there was little else they could do outside of this.  Fortunately, Alli got through the procedure, they were able to clean a good amount of secretions out of her lungs, and her vital signs have shown great improvement.  For right now she is back on the conventional ventilator and tolerating it better than she had been previously.  Hopefully this progress continues through the weekend.

My doctor appointment went well.  There are currently no signs of imminent labor.  So, it seems as though our little guy is staying put for the time being and will make his appearance as scheduled next Friday.  They have told us they can be flexible with timing if necessary.  Our doctor is on call all weekend, so he can do the c-section at any time.  For right now, we are sticking with our original plan.

Samantha's parent teacher conference went well.  She is described as a leader in her classroom and enjoys helping her classmates when appropriate.  She does various kinds of work throughout the day.  According to Miss Chandra, she enjoys the practical life activities in addition to the ones she tells us about - the pink tower, brown stair, and cylinder blocks.  They are working with her on tracing sandpaper letters and she has expressed an interest in learning how to tie.  So, they are working with her on the early steps of how to tie a bow.  All in all, a good report.

We'll continue to keep you updated on the latest as we are able.  Thank you for all of the prayers for Alli.  I am hopeful that she cleared a hurdle today and that we will keep moving forward.

Goodnight!