Happy New Year (almost)!

Well, we are still hanging out in the hospital.  Alli is looking much better.  We are just waiting for her oxygen to catch up with how she looks.  The doctors have told us that the virus can run a course of 8-21 days.  This seems to be on the longer end for her, but we are patiently waiting it out.  The good news is that they feel her lungs will re-inflate and work just as well as they did before.  They just need some extra help right now.  She is off of bi-pap and on high pressure oxygen.

Jason has been spending days at the hospital and I have been spending time with Samantha, Linda, and Jay.  Yesterday we took Samantha to an indoor play area and she had a blast.  The weather here has been cold and rainy, so we needed to get her out of the house.  

Friday, while Jason was at the hospital, I met with the nutritionist regarding a blended food diet for Alli.  One of the reasons we felt strongly about putting a g-tube in was the ability to put Alli on a more normal diet from whole food sources (not to be continued with Whole Foods sources - which would really strap the budget - but I digress).  We are hopeful that this will help build her immune system, improve her reflux (hopefully getting her off of reflux meds), and help to regulate her digestive system (in other words, help her poop more efficiently and regularly :) ).  Initially the nutritionist and I had a different approach as to how to achieve a healthy and balanced "home brew."  However, we worked our way to common ground.  Her initial suggestion included some carnation instant breakfast and a wide variety of jarred fruit and vegetable alternatives.  I'm not sure why anyone would take their kid off of formula and put them on a "home brew" of processed food.  What is the point of that!?  So, I explained (patiently as possible) that we weren't interested in a processed food diet, and that we were hoping to put together a 'brew' with as many raw and organic ingredients as possible.  So, we found common ground at a brew that includes whole milk, kefir, quinoa, fresh fruit, fresh vegetables, kale, flax, evoo, juice, hard boiled egg, etc.  MUCH better.  I also managed to get a recommendation for a powdered whole vitamin, as opposed to her suggestion to just crush up a flintstones and call it a day.  By the end of the conversation I believe her exact words were "you don't seem like the parent who wants to use the flintstones - so here is another alternative."  I'm glad we finally got on the same page.  

So now, the OCD side of me kicks in.  I have my Vitamix, which we were able to get at a discount thanks to some help from our GI.  For anyone that has a medical issue that requires blended food - Vitamix offers a 25% discount and ships for free!  I have my starter recipe with all of my raw and organic foods.  Now, I am obsessed with achieving the perfect combination of the most healthy foods possible for Alli.  Ridiculous.  Just about any combination of fruits and vegetables will be better than the formula we are giving her and at some point, I will settle down and come up with a good rotation of mixes, but I like to get things right the first time.  So, now I have to get my head around how and where to start and just bite the bullet and do this.  It will be best for her and I think may actually be good for the family, in general.

We hope everyone has a wonderful start to the New Year!  We look forward to the coming year with great anticipation as we await the arrival of our little guy and the celebration of Carrie and Luke's wedding...and well...everything else that will happen in between.  We have been so blessed - truly.  Samantha is thriving at home and at school and is so excited about the arrival of her little brother.  If Alli had undergone anything similar to this last year - before or after her heart surgery - it would have been a much different situation.  So, despite the frustration of being in the hospital, we have the balanced perspective to know that we are much better off now than we would have been then.  Her seizures are settling down and I'm confident we'll get to some (hopefully permanent) level of seizure control in the coming months.  Her heart continues to show good function.  There is much to be thankful for in light of our immediate circumstances.  And though we had different plans in mind for our holiday break, we are fortunate to not have had to juggle work in the middle of all of this.

Happy New Year!

Christmas 2012

It's the most wonderful time of the year!  That thought keeps ringing through my head this year. 

While I was in Memphis, Jason and Samantha were battling colds at home.  I had hoped Alli and I would miss out on their germs being so far away, however, they persisted in to that next week and sure enough Alli started getting symptoms early last week...just in time for Christmas.  So, here we are, day 5 in the picu at Scottish Rite, on the bi-pap machine.  I brought her in Friday night when her oxygen requirements were beyond what we could give her at home and she started to show signs of having to work too hard to breathe. 

Fortunately, Jay and Linda (Jason's parents) arrived early Saturday and have been helping us hold down the fort the last few days.  Jason stayed with Alli while I took Samantha to the Christmas Eve children's mass.  Given the number of children and the associated holiday excitement I could relax a little bit about her usual church inspired chatiness and antics.  I went home early Christmas morning and was there with her while she opened her presents.  Jason left shortly after breakfast to be with Alli and we all joined him later.  Samantha played hospital bingo with Jason and me while Linda and Jay spent some time with Alli.  Scottish Rite does an amazing job of bringing Christmas joy to the children here.  Alli had a sack of presents from Santa waiting for her when she woke up.  Dinner was brought in for families.  They had bingo in the lobby for patients and families.  They really do their best to make sure the day is special for patients and families.  We celebrated Christmas dinner later that day with Samantha's friend Gabriela Elisa and her parents.  The girls thoroughly enjoyed themselves and played so nicely together. 

We gave Jay and Linda a break today and they are in Raleigh until Friday visiting with Jason's brother and his family.  We have our hospital routine down pat and are enjoying some individual quality time with SJ during the day.  Then we join her together for dinner at night during change of shift at the hospital.

Alli is doing ok.  She is bummed out about the bi-pap.  The mask is more invasive than her usual oxygen cannula, but is necessary at this point to ensure adequate oxygenation and protection of her heart.  They did an echo earlier this week to make sure her function looked good and all appeared to be status quo.  So, we are grateful for that.  Prior to bringing her in, we were starting to see some progress toward sitting up and propping.  I am hopeful that will return once she is feeling better and off the machine.  It is hard to judge what is going on with her seizures when she isn't feeling well.  She doesn't appear to be having seizures while in bed, but I did notice a couple of head drops when I sat her up the other day.  She is due for another eeg next week (assuming she is well enough), so we will address the head drops then.  If there hasn't been sufficient improvement in the eeg, then we will explore a couple of other options - either the ketogenic diet, or a drug called Onfi (clobazam).  We have another infantile spasms friend that has had some success with Onfi and are hopeful that if the depakote/vigabatrin cocktail doesn't knock it out for Alli, that the Onfi will do the trick and we can hopefully put this behind us.  In the meantime, we are trying to be patient (and persistent) as she works her way through this.

We are looking forward to the arrival of my parents (weather pending) next week.  It is so nice that Samantha will be able to spend time with both sets of grandparents over her holiday break.  She always enjoys the special treatment and extra attention that only grandparents can bring.  Grandpa John's to-do list is growing by the day.  Tile to be fixed here, painting there, ceiling tile down the basement...

We hope everyone has a happy new year.  We are looking forward to see what the year will bring.  We are anxious to meet our new little guy and get his room set up in the coming weeks.

Update Day 4

We're home!  Goodnight!

Update Day 3

There was a man at the Fedex house on Monday morning who helped me get our belongings assembled before coming over to the hospital.  He was very kind and kept an eye on Alli while I loaded up the car and put together the things we needed to bring with us in the morning.  I happened to run in to him this evening.  He walked by my room and I waved him in to see how things are going.  He is here with his brother and nephew from Tulsa, OK.  His nephew is 18 years old and has seizures.  At 8 years old he had a section of his brain removed because they thought that section of the brain was causing his seizure activity.  Unfortunately, that proved to not be the case, as he is still having seizures.  To boot, this kid's mom died 6 months ago from cancer.  So, the uncle is here helping to support the dad and nephew through the process.  Please keep this family in your prayers.  They have been trying all week to provoke a seizure in his nephew and have so far been unsuccessful.  He has gone 18-19 days without one, which is the longest he's ever gone.  It is incredibly frustrating for them.

Today was a quiet day. They continued to monitor Alli by EEG. I pushed my red button a few times and we've made some adjustments to her medication. We are in the process of increasing her depakote to 750 mg/day. Tomorrow will be her first full day on this dose. We are hoping to see a reduction in myoclonic and atonic seizure activity. Her myoclonic seizures manifest by an extension of her arms. Her atonic seizures manifest as a head drop. Some of these movements are very subtle and hard to tell that they are even seizure activity. It is harder and harder to tell when to push the red button. 

Update Day Two

Today was much less eventful than yesterday, but much more informative.  Alli slept quite a bit throughout the day.  I think she was pretty worn out from yesterday's festivities.  Today was primarily focused on EEG monitoring.  I pushed the red button a handful of times for suspicious events.  I was able to speak with the doctor about some of them this afternoon. 

We experimented with reducing the dosage on one of Alli's medications.  I would say based on what I saw that we will be returning to our original dose tomorrow, but we'll see what the doctor says.

We spent some time talking about Alli's MRI.  Her scan came back better than he expected, based on her history.  There is some evidence of the impact of the vigabatrin in the scan, primarily as it relates to some of the fluid in the brain.  Those levels can fluctuate.  The microhemmorages that have been picked up on both scans he feels are insignificant to her overall neurological picture. 

I don't think we are going to get a good long range picture while we are here.  The doctor feels it is too early to tell what her neurological picture will be further on down the road.  So, we'll just have to be patient.

Otherwise, there have been lots of texts, emails, facebook posts, etc. of support.  All of which are very much appreciated.  We are accomplishing a lot by being here.  So, thank you for the love, prayers, and support!

In other news, Snickers had surgery today to remove several cysts.  His breed is prone to having them.  They will be sent off for biopsy.  Jason reports that he was an excellent patient and has been full of pep throughout his recovery.

Samantha is doing well.  She had an impromptu play date this afternoon with her friend, Gabriela Elisa.  The pictures suggest she had a fun time full of tea parties, good food, and great company.  Many thanks to Gabriela's family for helping us out in a pinch!

Update Day One

It was a busy day today.  Alli had labs drawn, an MRI, and is set up on video EEG.  She made it through anesthesia with flying colors.  She is resting comfortably now, hopefully for the night.

I met with Dr. Wheless this morning.  I must say, we are so blessed to be able to work with both him and Dr. Flamini.  We talked primarily about her medical history, with obvious emphasis on her infantile spasms.  The objective of today and part of tomorrow is data gathering.  I imagine we will start to hear some initial impressions tomorrow afternoon.

Thanks for all of the support and well wishes.  We are both doing great.  The food is good and I have a great view from Alli's room!

Advent and Neurology

Christmas is without a doubt my favorite time of year.  I have always loved it.  As a child it was great fun to get together with family, to exchange gifts, to celebrate with Aunt Ronnie and Sr. Jan on Christmas morning.  I have nothing but good memories about Christmas; even the year Paul threw up on Christmas Eve after opening the Mickey Mouse bank.  That was a good Christmas too.

As an adult my love of Christmas has really turned in to a love of Advent.  The magic of Santa and exchanging gifts wears off, but there is a renewed sense of hope in preparing for the birth of Jesus and the coming of the New Year.  I always find it ironic that Christmas is such a joyous time, but the readings at mass really tend to be more cautionary and not always the "feel good" sections of the new testament.  Whereas the celebration of Easter conjures these hope filled and joyful readings, but we're met with the resurrection.  It isn't that I don't get what is going on.  It is just dichotomy of what is transpiring that I find so interesting.  So it seems that the last two years have found us preparing for Christmas during Advent, but also preparing ourselves for what lies ahead with Alli.

Last year at this time we were adjusting to life at home, post op with Alli, learning how to give medication, and trying to keep her as comfortable as possible.  All the while rejoicing that she appeared to be seizure free.  The preparation for Christmas was somewhat filled with anxiety given our new circumstances.  Alli wasn't feeding well.  It was difficult to administer multiple medications by mouth.  But, there was great joy in beginning this new phase of her life, post cardiac repair.  She had a new rosy hue, a repaired heart, and we would meet the other challenges as they came.

This year we find ourselves at LeBonheur Children's Hospital in Memphis.  We are here to meet with Dr. Wheless and have him evaluate Alli's neurological status.  Beginning today she will undergo an MRI, Video EEG Monitoring, Neuropsychology testing, and regular consultations with the doctor.  They have told us to plan to be here for at least a week.  So, here we are.  We stayed last night at the Fedex Family House across the street from the hospital.  Beautiful accommodations.  We checked in around 6:00 pm CST.  There were volunteers serving dinner.  So, after we unpacked, I ventured down with Alli to have a bite to eat.  I think there was almost a brawl between the ladies about who could hold Alli while I ate.  Then we returned to our room and snuggled in for the night.

We had an early start this morning.  Up at 4:30 to be at registration by 5:30 am.  Most of you know I am not a morning person, so that was a stretch.  But, all went smoothly.  We met several other families in the waiting room.  All here to see Dr. Wheless.

We are currently waiting for a cardiology consult before Alli has her MRI.  The anesthesiologists want to be sure they understand her cardiac status before administering anesthesia.  Once she has her MRI she will be hooked up for video EEG monitoring and we expect to meet with Dr. Wheless this afternoon.

I will keep everyone posted as events occur, results come in, treatment is discussed, etc.  At this point, I am actually most interested in the neuropsychology testing.  They will evaluate her to determine what her developmental age is.

Samantha started in the primary classroom this morning.  Aside from me sending Jason to the wrong car pool line (oops!) it was smooth sailing for her.  I can't wait to hear from her about it later!

Success!

Today was a whirlwind.  This entire week is actually insane.  Alli and I are scheduled to travel to Memphis this weekend and will check in to the Epilepsy Monitoring Unit and LeBonheur Children's Hospital on Monday morning.  So, there is a lot to do in preparation for our trip.

Today Alli had both physical and speech therapy, labs drawn, and her first g-tube change.  Knowing it was a crazy day of appointments, I had the crock pot going first thing this morning.  Alli is making good progress in both development areas.  She is developing greater trunk strength, tolerating long periods of time on her stomach, rolling to each side, occasionally rolling all the way over, mastering head control, and improving at her prop sitting.  We are going to have her fitted for a stander, which will hopefully help her with weight bearing on her little feet and get her ready for standing/walking.  She's tolerating small tastes in her mouth as well as oral stimulation.  She gets understandably nervous when things come toward her mouth, but once she realizes it is a friendly encounter, she tends to relax a little.  This will be an up hill battle for her.  She's had a number of traumatic things happen through her mouth, so her aversion is understandable.  We passed the g-tube change with flying colors.  The nurse said her stoma (site where the g tube is inserted in to the stomach) looks great and I did a good job taking out the old tube and replacing it with a new one.  I have to say, I was pretty proud of myself and she was a trooper.  It was much less traumatic then I imagined.  We just went in and took care of business.  Coming up over the rest of the week, Alli will have an appointment with Dr. Flamini to discuss her most recent EEG and labs, determine if we need to make any additional medication changes, and confirm whether or not it is still advisable to make the trip to Memphis.  She will also have her synagis shot on Wednesday, which protects her from RSV.

It was a weird feeling crossing the one year mark from when she started having spasms.  At this time last year, we thought we had dodged a bullet.  As we searched for the "why," we had convinced ourselves that the spasms were what brought us to her heart surgery and she would get through initial treatment and move on.  We never anticipated we would still be dealing with this a year later.  As I look at her now, it is hard to tell what her actual neurological status is.  There are definitely signs of development and improvement, but alas, we have the messy EEGs.  So, hopefully our appointment on Wednesday and our trip to Memphis will help to provide some clarity as to her neurological picture and what we can expect going forward.

Samantha graduates to the primary classroom this week.  She will now be in a room with 3-6 year olds.  We are excited to see what lies ahead for her in this new experience.  We have also had great success with the Tot Clock.  We had been making excuses for months about the acceptability of Samantha climbing in to our bed at night.  She would go down just fine in her big girl bed, but without fail, at some point during the night, we would find her at the foot of our bed, or wedged in between us.  A quick conversation with the pediatrician lead us to 1 of 2 choices - 1.  locking her in or 2. finding a tool that would give her a visual cue as to when it was "sleeping time" vs. "awake time."  We opted for the more gentle approach and invested in a Tot Clock.  Best decision ever.  We still have occasional middle of the night visits, but they are few and far between.  It has also been a lifesaver with naps.  She now understands that she has rest time, regardless of whether or not she chooses to sleep, until the yellow light comes on.  Can't say enough good things about it.  Samantha is growing more and more interested in her baby brother.  She talks to him in my belly.  In the mornings she will come over in hopes that he will move or kick and says "wake up little man!  it's your sister, Samantha."  Melts my heart.  She is so excited for him to arrive.  She also likes to confirm that everyone was born and she knows that she was born in the hospital.  She tells me this repeatedly throughout the day.  She has hit a bit of a whining phase, which I'm not going to lie, drives me nuts.  This weekend, as I was enjoying my Michael Buble Ave Maria and other Christmas music, I found myself losing my patience with the whining and scolding Samantha.  It takes a special person to realize the absolute ridiculousness of losing your patience with a three year old with the Ave Maria playing in the background.  All I can do is shake my head sometimes.

Well, that is the update on our end for now.  I will keep you posted throughout our adventure next week.  In the meantime, enjoy the blessings and joy that the Christmas and Advent season bring.  It is a wonderful time of year!

Giving Thanks

Dear Family and Friends,

As you know, at this time last year, we were with Alli in intensive care waiting for her heart surgery and learning about infantile spasms. We have come a long way over this past year and we just wanted to share our gratitude with you, since we can't be with many of you in person.

At Thanksgiving 2012 we are thankful for the following:

The many trips my parents have made here to help us around the house and to keep a sense of "normal" for Samantha

The medical and developmental progress Alli has made over the past year through the tireless efforts of many specialists, therapists, and surgeons.

To be employed and by such people that are so generous and sympathetic to the many unexpected events over the past year

The healthy arrival of baby Millie, or Miwi (as Samantha affectionately refers to her)

The joining of the Stocks to our immediate and extended family and the joy they have brought to Carrie's life

Samantha's strength and resilience in handling aspects of childhood that will be drastically different from her peers and the many laughs she brings to our house on a daily basis

The many sacrifices you have made to help us.

The gift of being able to travel to Raleigh this Thanksgiving to celebrate with our family here.

Finally, we are saddened, but grateful, for the addition of Grandpa Culos, to Alli's many heavenly advocates. We know he looks out for her and believe that he conspires with Grandma Brune to help us on a daily basis. It is hard to see Alli smile and not think of him.

We wish we could be with you to celebrate today, but know how thankful we are to have you in our lives.

With love and gratitude,
The Hakerem's

Hand me downs...

It has been a busy couple of weeks since we were discharged from the hospital.  Alli's recovery has been slow, but she is recovering and doing well.  We are slowly working her back to bolus feeds to give her stomach a chance to fully heal.  She was on a continuous feed while she was in the hospital.  This week we are working on feeding her at 75 mL per hour.  So she is connected to the feeding pump for roughly 2.5 hours at a time during the day and then off about 1.5 hours in between feedings.  Bolus feeds are more ideal than continuous feeds as they mirror a more normal feeding pattern and should help Alli to recognize hunger.  So, the ultimate goal is to get her to four meal times per day and work on oral motor/feeding therapy at times when she should start to recognize hunger.  

I am starting a list of "inventions" as a result of our journey with Alli.  So far I have "invented" a special sock to keep her pulse ox sensor on her foot - this consisted of cutting the heel out of an already existing sock.  Today, after an annoying phone call with the medical supply company (they are genuinely nice, but I could do without having to talk to them on a monthly basis), I decided that there needs to be an online ordering system for medical supplies that connects with the insurance company so I can go online and quickly input what I need for the month, know what insurance allows, and make an informed decision about whether we want to come out of pocket for additional supplies.  Seriously, there is no online system for this.  Should be pretty easy to establish.  My next million dollar idea is to design a multidisciplinary playmat for children with special needs that are not infants.  It will incorporate sensory items and the overhead toys will be high enough to reach so that they don't hang out in the child's face.  I am accepting applications for construction of said mat.  If we hit it big, there could be royalties involved.

It suddenly became fall while we were in the hospital.  The weather is cooler and so comes the change in wardrobe for the girls.  For whatever reason, the change to 12/18 month clothes for Alli has unearthed a wide range of emotions.  Kind of silly, but true.  When Alli was in infant clothes I didn't necessarily equate her hand me downs from Samantha with anything in particular.  Though the infant milestones are big ones, they often run together.  Rolling over, pincer grasp, lost reflexes, sitting up, all necessary and important developmental milestones, but none that stuck out from a wardrobe perspective.  Now, we are in to the clothes Samantha was wearing when she was walking and for whatever reason, those memories come back vividly and the contrast between the two girls becomes much more profound.  I can remember where the outfits were worn and watching her toddle around in them.  The same outfits we watch Alli try to roll over in.  We don't ever really focus on what Alli doesn't do. In fact, I hardly ever stop to think about how old she is.  I think that is probably why the clothes are almost haunting.  Though we appreciate and celebrate every accomplishment and live with her in her moments and go at her pace, they are a reminder of how profoundly developmentally delayed she is.  There is nothing to do about it but be grateful for the grace to accept her as she is, the physicians and therapists helping her in every way they can, and the reese's cups and mini twix left over from Halloween :).

Samantha is getting to a really fun age.  She had a great time trick or treating with her friend Gabriela Elisa this past week and had a great third birthday.  She had a special early celebration with nanny and grandpa John before they left to go back to Michigan.  We were joined by my cousin, Maribeth and my Goddaughter, Anne.  Then she had a small party on her actual birthday with her beloved, Meggie (and her fiancé Max), and her friends Caroline, Julia, and their families.  She celebrated Minnie Mouse style and loved every cake filled minute of it.  Her new favorite phrases include 'yes?' or 'yes or no?' at the end of a question.  For example, "Mommy, you want to do a puzzle with me?  yes?"  or "Daddy, I eat ice cream cake?  yes or no?"  She's a trip.  She is also very determined to do things herself.  "I want to do it!" is a phrase we often hear around the house.  She has also taken up the art of negotiation, for example, "Mommy, I ride my tricycle?"  "Not right now, Samantha.  It is raining outside."  "Just try, mommy."  We hear "just try" a lot when we deny her requests.  Often at really funny times.  Samantha graduated to her big girl bed a few weeks ago.  She loves it and loves to hear about how Jason and my dad built it for her.  We have left a few pieces in the room from her ladybug nursery and upgraded to a more mature ladybug theme.  We had fun picking everything out together.

New baby boy continues to grow and develop.  His 20 week ultrasound looked good and we officially graduated from perinatal care for this pregnancy.  We picked out his nursery pattern and everything arrived this past week.  We are going with Dr. Seuss ABC's.  Now we need to pick the wall color and furniture.  We have started to debate names.  Per usual, we will wait until the very last minute to make a decision and it is going to be a tough one.  We like a lot of boy names.  

Jason and I are doing well.  I started contract work with Deloitte last week.  It was sad to say goodbye to my new friends at UPS, but is always so nice to see familiar faces back at the firm.  Plus, I have been missing the Monday and Tuesday noodle bowls from the 191 bistro.  They make my week.

Ok - this post has been all over the place.  Enough for tonight.  I think all of the political commentary and iterations of the electoral map have rendered my brain useless.  

The road to recovery...

Alli had a good night in cicu. They had her oxygen weaned down to 2 liters by the time I arrived for morning rounds. Her morning chest X-ray looked worse than yesterday and shows a fair amount of fluid accumulating on her lungs. They are treating that with lasix.
Her sats have been in the 90s all morning and she is currently down to a half liter of oxygen. They have started her feeds as of this morning. She is currently getting 10 mL per hour and they will increase by 10 every eight hours until they get to 30 mL per hour. She has been pretty groggy and sleepy today, which I expected given yesterday's activities. I am hoping to see her perk up later tonight or by tomorrow. She is due to be transferred to the cardiac step down unit today, pending an available bed. Will update more when we have more information.

So, we transferred to the step down unit as planned yesterday. Alli was pretty groggy and sleepy, partially I think from the stress of the procedure and partially from the Tylenol with codeine they gave her for pain. Today she has been somewhat more reactive, but still pretty out of it. I learned how to insert her g-tube in case of emergency. We had a brief visit with one of our favorite PTs at Egleston. Alli also had a short echocardiogram to check her heart function as compared to her last echocardiogram. There were no remarkable differences between the two. We are looking forward to some more of her personality coming out tomorrow. Everyone else is doing well. Samantha has been entertaining my parents and is off painting pumpkins this afternoon with one of her gal pals from school and Megan, our nanny. Jason and I are splitting shifts at the hospital, but look forward to getting everyone back under one roof.

Today has been a quiet day. We went up on Alli's seizure medicine yesterday, which usually makes her pretty sleepy. We did play a little throughout the afternoon. Nanny and Grandpa brought her some of her favorite toys from home. Attached is a picture of her stretching out. The other picture is of her g-tube button...for those who are curious about what it looks like.

Surgery Day

Today is the big day! We say goodbye to Alli's ng-tube and adenoids...and hello to a g-tube and hopefully slightly improved oxygen levels. We'll post updates throughout the day. As you can tell from the photo, Alli is very stressed about the situation...

Alli just went back with the anesthesiologists. She will have her adenoidectomy first, followed by the placement of her g-tube. We spoke with both doctors this morning. They both appeared sober and well rested. Dr. Statham was her usual happy and perky self. We should hear an update from Dr. Statham in the next hour.

Alli is out of surgery and in recovery. We are waiting on confirmation of her room location in the cardiac step down unit.

Her adenoidectomy went smoothly. The placement of her g-tube also went well. She will be on fluids for today and then they will slowly transition her to continuous feeds starting tomorrow. In about 6 weeks, they will train us how to insert the tube on our own in the unlikely event that it comes out. Overall management should be easier than her ng tube.

Just a quick update - they are going to monitor Alli in the cardiac intensive care unit. She looks really good, but is having a hard time managing secretions in her throat. Therefore she requires regular suctioning and increased oxygen. We hope it will just be a short stay. We look forward to seeing her as soon as she is settled in.

Alli is settled in cicu. She will spend the night here so they can continue to monitor her oxygen levels. We are trying to keep her as calm and comfortable as possible, as the excitement seems to cause her some discomfort. So far her blanket and purple hippo have been the best medicine. We have princess Sophie on standby for when she wakes up.

Montessori Mile

This morning was the Montessori Mile at Samantha's school.  There is a 1 mile run for adults and older children.  Then they have a series of 'dashes' for kids 6 and under.  Finally, there is the diaper derby for kids 2 and under.  Samantha participated in the Diaper Derby.  Below are some photos from the morning.

 Samantha fueling up with Baby Jenna before the race.

 Scoping out the competition...

 Warming up on the trampoline...

Waiting at the starting line 

 Taking a victory lap with her ribbon

 Recovering with Salena and Ariana post race

Admiring her ribbon 

Having fun with the football after

All in all it was a great experience for her.  We had hoped to attend as a family, but decided to keep Alli home given Monday's procedure.  We look forward to taking her in the future!

Oh yes - Montessori doesn't award 1st place, etc. - but it should be noted that Samantha blew past the competition and did come in first :)

Birthdays

I can remember as a child thinking that my birthday was the next greatest holiday to Christmas...and really...it was a toss up.  Now. it seems my birthday is more of a glimpse in time to look back on the previous year and forward to all that will be accomplished in the next.  A New Years of sorts.  Each year my birthday happens to fall around the Jewish high holy days of Rosh Hashanah and Yom Kippur.  The Jewish celebrations of the new year and then the feast of atonement.  I had the occasion to celebrate Rosh Hashanah with my inlaws this year, which was such a special experience. Though I'm sure it lacked some of the traditions they are accustomed to, it was so nice to have an occasion to celebrate and to learn more about the holiday.  We each contributed to the meal, including Samantha, who was able to use her Montessori baking skills to help Linda prepare the noodle kugel.  I hope it is a celebration we will share many more times in the future.

As for reflections on the past year.  I will spare you the laundry list of realizations and profound life experiences, most of which are not really all that profound.  The one thought that does strike me is this.  Just about two years ago, as I turned 31, we learned that we were pregnant with Alli.  Obviously at the time we had no idea what all would be in store for us when she joined our family.  But, I remember thinking at my 32nd birthday, surely the next year won't be as challenging as the previous and all good things will be in store for us.  We're due for a good year right?  And it was a good year.  To some it may seem like it was a disaster.  Uncontrollable seizures.  Open heart surgery.  Another dual procedure looming in the future.  Multiple hospital stays of varying lengths.  Constant progression and regression in development.  How could it possibly be a good year?  But it was.  None of those experiences has defined our family.  We make the most out of every opportunity we can to see our family, to get out as a family and have meals together and visit with our friends (when they are healthy :)), we had the opportunity to make a long road trip back to Michigan, and these experiences have brought us closer together as a family.  That isn't to say that there isn't a fair share of raised voices, lost tempers, and many tears of frustration, but there has been the hope of many answered prayers, renewed commitment in each other, and the realization that there is more to life than perfection.  So, I can only hope that the next year will be the same.  That the challenges will continue to strengthen us, that we will continue to grow in faith and celebrate our traditions, and that we will continue to embrace each other as we are, without regard to our individual limitations.

As for the girls...

Samantha first today.  She is really thriving at school this year.  Her favorite tasks continue to be baking, painting, setting the table for snack, playing outside, and we are told she enjoys cutting cucumbers.  We have also seen her really expand herself socially.  She shows a caring attitude toward the younger children in her class.  She greets them as they enter in the morning and brings their shoes over to help them change.  At the end of the morning, when she recognizes the parents, she will take the younger ones by the hand to greet their parents.  She is quick to volunteer to help, which has also extended to our house.  Her communication continues to develop.  Lately she has been emphasizing herself by saying "I SAIIID" if she thinks we haven't heard her requests.  She is also enjoying watching the evolution of the construction of a house around the corner.  She asks us if we can drive by the "house that's broken" just about every time we return to the neighborhood.  She continues to show independence in every day activities and enjoys doing her puzzles.  She also enjoys Mickey Mouse Clubhouse and Mary Poppins.  We are trying to broaden her horizons to include Beauty and the Beast and the Lion King, but she's stuck on Julie Andrews.  So, maybe we'll have to move on to the Sound of Music.  We haven't told her about the new baby yet.  We definitely talk about the baby around her, but have not had the conversation to impress upon her that she will be welcoming a new brother in the spring.  I expect she will be excited and if she is half as caring as she is with the children in her class, I think she will continue on as an amazing big sister.

Alli has been doing well, since we brought her home from the hospital.  We are adjusting to oxygen equipment and how to monitor her sats without driving ourselves (and her) crazy.  We have also seen a welcome progression in development.  We have seen a departure from her right side/right gaze preference.  She has started grabbing her feet again.  She is rolling on her side to both sides.  She is increasingly more verbal in terms of making noises and we have seen a marked reduction in her seizure activity.  I hesitate to say that she is seizure free, but we have seen definite improvement.  We have an appointment with the neurologist tomorrow to discuss our pending trip to Memphis.  Given her recent improvement, we are considering delaying our trip so that Alli can have her g-tube placed and adenoids removed on October 15.  We would prefer for her to have the surgery before going to Memphis in the event she suffers complications around anesthesia that cause further neurological setbacks.  We would delay our trip until December.  Oh yes, and we have seen Alli smile and we can get an occasional laugh out of her.  I think I will end on that note, as that is pretty much the best birthday gift of all.

We'll catch up again soon!!

We're home!

That is all I have to say...well...that and I am really looking forward to date night at the braves game on Saturday followed by o.a.r. concert...yippee!

Have a wonderful hospital free weekend!  Thanks for all of the love and prayers these past 2 weeks.

Looking Good Today!

Hospital Stay Week 2

So, we were hoping Alli would be home by now, however, we are parked here until she has made close to a full recovery. We were cleared to move out of icu yesterday, however, there wasn't a bed for her on the general peds floor yesterday. So, she rested here through the night and I anticipate that she will move some time today, assuming bed availability changes. She has been playful and SMILING during the day and resting fairly comfortably at night. We were elated to see some smiles from her yesterday! My mom and dad arrived late Friday night to give us a hand, which has been super helpful! They will be here until Jason's parents arrive later this week. Samantha is in for some serious spoiling over the next week.

Will update more when we have more information.

Megan

Resting with princess sophie

Labor Day Weekend Update

Hi family and friends,

As many of you know, Alli was admitted to Egleston yesterday afternoon.  She had quite the exciting journey here, arriving by helicopter.  She was admitted in respiratory distress, which they have determined is a result of rhinovirus (common cold to the layperson).  She had a difficult evening and has been fighting fever and working very hard to breathe.  Therefore, they are going to move her in to intensive care so that she will have more intensive nursing care and they can safely take more invasive measures to help her breathe, if necessary.  Right now she is resting somewhat comfortably and I expect we willbe moving soon.

I will post updates as we have more information.

Have a great holiday weekend!
Megan

Update: September 2, 2012

Alli rested comfortably last night and in to this morning.  She is currently on 2 liters of oxygen and they have been able to get her congestion under control with a combination of afrin and deep suctioning.  She is still in icu given the level of oxygen she currently requires.  Our goal is to get her oxygen reduced and her sats stabilized so she can go home.  She then will need to get and keep herself healthy enough to have her adenoidetomy and g-tube inserted.  We would like to have her procedure done before she goes to Memhis the week of October 8th.  As of now we are scheduled to check her in to the epilepsy monitoring unit at le bonheur children's hospital in hopes of getting control over her infantile spasms, if we haven't been able to get control before then.

We will keep you posted with information as things change.  Thanks for all of your prayers, love, and support!

Megan

Update: September 3, 2012

Alli and I had a pretty restless night last night. We were up every couple of hours for suctioning, various bells going off, etc. She has generally been irritable when she is awake, so I have set the rocking chair up close to her bed so we can snuggle. In general she is not a huge fan of being suctioned or the nasal cannula. The doctors came by this morning and said she will likely spend today and tonight in the icu, but will hopefully transfer back down to general peds tomorrow, assuming they can reduce her oxygen. This morning they have her down at 1.5, so that is a start. She is resting now. We will have an ENT consult tomorrow regarding her status and the timing of her surgery.

Thanks for checking in with us!
Megan

Update: September 4

Today was a productive day. Alli moved to the general peds floor this afternoon. We were also able to get her oxygen down to 1 liter. She has been much more awake and very alert and active. It is likely that she will come home with oxygen and a pulse ox machine. The order was placed for both pieces of equipment today. We have not discussed a departure date, but hope to be home by the end of the week. I hope everyone had a good start to the shortened work/school week!

Megan

Hello again!

I suppose I need to change the title of this post to Labor Day week. Alli is back in icu as of this afternoon. After a good day yesterday, she started to show signs of potential pneumonia today. So, she is on pressurized oxygen and an antibiotic to help control any potential bacterial infection. Not a huge fan of antibiotics, but I think they are warranted in this instance. So, we hope for the best and to be able to minimize their use as much as possible. She hasn't had any antibiotic up to this point, so we are grateful for that. Hopefully it will be a short stay in picu.

In other news, we are very excited to share that we are pregnant again with a little boy. He is due March 12 and so far appears to be healthy. We had our 13 week ultrasound this morning and there was no mistaking the gender.

Ok, glad I could end on a good note! Have a good night!

Megan

Last days of summer...

Oh my goodness.  I can't believe how little time has passed and how much has happened over the past month.  We said goodbye to our Michigan family shortly after my last post and headed back to Georgia.  Since returning home we have enjoyed visits with Jason's parents from Miami, Jason's brother and his family from Raleigh, and Jason's Aunt and Grandmother from Boston.  We had another birthday party for Alli and we've had all of our specialist follow up visits.  

Family first.  Jason's parents drove up from Miami to spend a week with us.  We had such a nice visit and they were a huge help to us as we transitioned back home after being away.  They had their first date with Samantha at the DeKalb Farmer's Market followed by lunch at the Peachtree Dekalb Airport. It was special that they were able to be here for Alli's 1st birthday celebration.  We were also joined by our South Carolina family, who have generously made so many trips down to visit us this past year.  It is always nice to see them.  And, of course, we were surrounded by close friends.  

We waved (well, Jason waved) goodbye to his parents early Sunday morning, quickly changed the sheets and welcomed our Raleigh family on Thursday afternoon.  The girls had a wonderful time with their cousins - Samantha enjoyed digging for worms with the boys, wandering around with them while they fished in the lake near our house, the Gwinnett Braves game, and her first trip to the aquarium.  The boys were wonderful with her.  It is always nice to catch up with them and we look forward to making our first visit to Raleigh in 3 years over Thanksgiving.  It will be a full house, but full of love and lots of fun.  We can't wait!

We waved goodbye to Raleigh Sunday afternoon, changed the sheets, and welcomed Gita (Jason's aunt) and Hella (Jason's grandmother) Thursday evening.  It was such a special visit and we were so glad they were willing to make the trip down to see us.  Samantha really enjoyed her time with both of them.

Ok - update on Alli.  We have seen the following specialists since our return...Pulmonology, GI, Opthamology, Cardiology, General Surgeon, and of course, Neurology.  

Our pulmonologist visit revealed that Alli's sleep study shows that she has both obstructive and central apnea.  Obstructive apnea meaning there is something in her airway (usually adenoids/tonsils) obstructing her breathing during the night.  Central apnea occurs when the brain doesn't send the message to the muscles that control breathing.  So, it is more of a neurological issue, then an anatomical issue.  We are addressing the obstructive apnea with a visit to the ENT in a couple of weeks.  We are hopeful that removing the adenoids will address both issues.  Alli will have a repeat sleep study 5-6 weeks post op to confirm.  If that does not correct the issue, then she will need to wear an oxygen canula when she sleeps at night and takes naps.  

Our GI visit resulted in a transition from baby formula to pediasure and a recap of our visit with the general surgeon regarding the placement of Alli's g-tube.  We haven't scheduled this procedure yet because we are waiting on the outcome from our visit with the ENT.  Assuming Alli will also need her adenoids removed, we are hoping to tackle both procedures in one visit to the hospital.  My assumption is that this will occur sometime in the fall, once we can get the surgeons' schedules and the cardiac anesthesia schedule to align.

Our opthamology visit was pretty straightforward.  The doctor is anxious for Alli to be weaned off of vigabatrin - one of the medicines she takes to control her infantile spasms.  The medicine can cause retinal toxicity and it is difficult to evaluate her vision to determine if it is being impaired by the medication.  As of right now, we know she is able to see and track objects.

We continue to make strides with cardiology.  Alli graduated to a six month follow up appointment.  While her branch pulmonary arteries are still narrow, they are growing with her and are sufficient enough for her heart to have good function.  We continue to monitor the leakage from her pulmonary and mitral valves, which currently measures mild - moderate.  Overall, they think her function is good and she can continue medicine free!!  As we head in to cold and flu season we'll take extra precautions to ensure she is protected.  Thankfully she qualifies for synagis again this year, which protects her from RSV.  

Neurology is our nemesis.  As many of you reading this blog can attest, Alli looks amazing - compared to how you have seen her over the course of the past few months.  She is alert, vocalizing, rolling on her side, perfecting head control.  She looks really good.  In spite of that, she is still have seizures.  Her 8 hour EEG resulted in me pressing the red button upwards of 50 times.  Her seizures look mild compared to how they started.  When she has one now you see a split second roll of her eyes and it is sometimes followed by a twitch of her shoulders or slight movement in her arms.  This past weekend, we saw her seizures evolve in to something more significant.  A call to the neurologist Monday morning resulted in increased medication.  Since increasing her medicine, we haven't seen the more significant episodes.  We are hopeful.  We are also considering having her evaluated in a more specialized environment.  It is becoming increasingly apparent to us that there are limitations within the neurology community in Atlanta (which, in all fairness, we were warned about at the outset of this journey - but were guardedly optimistic that maybe our experience would be different).  At any rate, we are evaluating a center at Le Bonheur children's hospital in Memphis with a doctor that is a renowned specialist in infantile spasms - Dr. Wheless.  We are also evaluating Johns Hopkins for implementation of the ketogenic diet and Boston Children's because, well, they are the best children's hospital in the country and rank #1 in neurology.  Stands to reason that they might have some good neurologists there, as well.  We'll see.

Amidst all of that, we keep up with physical therapy and feeding therapy.  Alli graduated from occupational therapy last week.  She will resume that once she gains more endurance and makes some additional strides in PT.  Feeding therapy continues to go well.  It is slow, but Alli is showing improvement every week.  We are fortunate to have wonderful specialists working with us.  PT is a struggle for Alli.  There are times when it seems like she is moving forward and then it seems like we hit a plateau for what seems like an eternity.  This is likely due to her spasms, but is frustrating for everyone involved.  

The rest of us are doing well.  Samantha has her meet and greet at school next week and then returns to her normal schedule the following week.  I continue to work at UPS about 20 hours a week.  Jason is doing well.  Samantha is going through a daddy phase right now, so he's getting lots of extra love and attention from Samantha.  Snickers is looking forward to the fall and some cooler weather.

Ok - off to watch the women's all around finals...too bad stupid CNN ruined the outcome for me earlier today.

The First Year

It is hard to believe it has been a year.  This time last year I was wheeling back and forth between my room and the NICU to breastfeed Alli.  Every three hours.  My mom stayed with me through the night to make sure I could get back and forth and then we came back to the room to pump for 10 minutes after.  We were so excited that she fed so well by mouth.  Upon being discharged from the hospital the doctor in charge of the NICU commented that he had never seen a baby with Down Syndrome do so well.  I think it is because we were so committed...from the start.  There was all of the adjustment one would expect to the news as it unraveled over the course of my pregnancy and then over the course of the past year, but no matter what, I think we can safely say that we have risen to every challenge set before us and have done our best to give Alli the best life possible. 

Today just seems surreal.  We had an amazing celebration with extended family and part of me still can't believe that we are in Michigan, much less that Alli was in Chicago 2 weeks ago.  We have come a long way since this time last year.  Alli made it through the NICU without incident, endured a complete cardiac repair of 5 heart defects, has fought through multiple epilepsy medications to control infantile spasms, has had countless EEGs, participates in weekly physical and occupational therapy, has weathered two colds, and withstands her ng tube.  Through all of this, she has an amazing spirit and is continuing to develop as her body allows.  Jason and I saw her roll over 2 times this weekend.  A developmental milestone we have been working on with her for months.  She is amazing.  Likewise, Jason and I are different people than we were a year ago.  I have walked away from a career that once showed great promise for a job that gives me sanity.  Jason has made sacrifices to be home for bedtime almost every night and spend time with us on the weekend.  We have conquered multiple medications, learned how to insert feeding tubes, coordinated complicated treatment with multiple specialists, and have learned how to adapt to less than ideal circumstances so that we have a semblance of normal life for ourselves and the girls.  We take advantage of opportunities to get out with eachother and the girls, knowing that good times can change to challenging times in an instant and without warning.

We know that the next year will bring new challenges.  Alli will be getting a G-tube.  We will be contacting a surgeon this coming week to schedule a consultation and then the procedure.  Based on discussions with multiple specialists this seems to be the best option for Alli.  We are already working with a feeding specialist in hopes to keep the tube in for as little time as possible.  We love Miss Heidi and she is Midge approved!  We will also be scheduling an appointment with an ENT to have Alli's adnoids checked.  Her sleep study showed a mild obstruction and her oxygen sats have been at the low end of 90 - cardiology has ruled out shunting as a cause for this, so our next stop is the ENT to see if her adnoids are causing the problem.  We will continue her treatment for infantile spasms and have an 8 hour EEG scheduled for July 16.  Then - there is all the unknown.  What I have learned over the past year is that no matter what - we can handle anything that is set before us.  We have the support of wonderful family and friends and our faith grows more and more each day through this experience.  We have experienced countless miracles - some that are known and some that are yet to be revealed and I'm sure there are a few that haven't been noticed but when I reflect back I often think to myself - wow - it was miraculous that...and another one comes to light.  God is working with us every day.

So, thank you for everything you have done for us over this past year.  For the many prayers, masses, novenas, well wishes, gifts for our daughters, visits to our home, phone calls, emails, blog comments, meals, and all of the other things that are escaping me in this moment.  It all helps us to keep a semblance of a normal life and feel connected to you.

Samantha has been amazing - by the way.  She is talking in sentences and is thoroughly enjoying having dance parties in the living room with us and Megan, her nanny.  Her favorite is the Hot Dog Dance from Mickey Mouse Clubhouse.  She turns around and says "Holy Cow, Mommy!" and says "again!" as soon as it is over.  It melts my heart.  She also loves tinkerbell and minnie/mickey mouse.  She has had a few opportunities to hold Alli in her lap and loves to give her sister "big hugs."  She enthusiastically helped her open her gifts this year and showed her (hand over hand) how to use many of them.  They are so lucky to have each other.

Carpe Diem

It is cheesy, but it is the truth.  Since things have started to steadily improve with Alli we have taken advantage of every opportunity we can to get the girls out of the house and get ourselves out of the house, as well.  Our weekends have been full of good quality family time.  We've taken the girls out to eat, gone to the pool, entertained friends, and managed to have a date night without stress.  It has been wonderful.  However long it lasts, it feels like a gigantic weight has been lifted from my shoulders.  We still give Alli meds 3x day and she still has intermittent spasms (and a cold right now), but she hasn't vomited in over a week and she is making developmental strides every day.  This weekend we have noticed her being much more vocal.  She is definitely trying to communicate with us, which is something we haven't seen from her since before her surgery. She continues to try to roll over.  She rolls consistently on to her side and will hang out there for a while, especially if I have her baby einstein turtle in front of her, but she hasn't been able to make the full rotation.  It will happen any day, I'm sure.

Samantha has been venturing out for new experiences, as well.  Last weekend I took her to mass with me for the first time in over a year.  I was nervous about how she would do, as she demonstrates all of the most charming 2 year old qualities these days - tantrums, high pitched squealing, throwing herself on the floor, etc.  To my surprise, she behaved very well.  There was a moment of awkwardness when we walked in and got settled.  She looked up on the alter, pointed, and exclaimed "King Cole!"  She has a Wee Sing dvd at home called King Cole's Party and she evidently mistook the priest for King Cole.  It's possible we need some more time reading "the Child's Guide to the Mass" and less time with King Cole's Party.  Lately she has taken to calling us by different names.  Mine aren't so exciting, however, she lovingly refers to Jason now as Jason Jay and also Baby Daddy.  Baby Daddy came from dinner one night when she was naming everyone at the table and their relation to Alli.  For whatever reason, Baby Daddy stuck, and now she uses it on a regular basis.  She has also developed an affinity for shopping.  This week, before school one morning, she came up to me as I was standing at the kitchen counter, tapped my leg, looked up, and said "Go to Target sweetie?"  If only I could have scooped her up and driven her right over there.  It melted my heart.

Jason and I finally made it out together.  We ventured over to Local Three on Saturday night with our good friends.  It was so nice to have a night out.  It was great food and great company!  I had to cancel plans with him a couple of weeks ago to see the Zac Brown Band because Alli was feeling so miserable.  So, it was especially rewarding to be able to go out and know that she was just fine at home with Megan. Though, I would have loved the concert, I think I would have been distracted the entire night.  I felt much more comfortable leaving on Saturday.

This week will be a busy one.  Alli will start PT with her new in home physical therapist, Brittany, on Tuesday.  Samantha has her end of the year party on Wednesday morning.  Alli has OT on Thursday.  We also need to work in a weight check with Dr. Blumenthal and blood work to see if she is having a negative reaction to the depakote.  Depakote can cause liver toxicity, so her blood work will be managed regularly.  Finally, Samantha has her last day of school on Friday.  It has been such a great first year at Montessori.  We're excited for her to go back next year and work her way in to the primary classroom.  She will get to return in the fall as the Big Fish in the Toddler II pond and then will hopefully move around the middle of the year to the Primary room.

There have been many prayers of Thanksgiving over the last few weeks.  I continue to say prayers to St. Anthony as we work through the treatment for infantile spasms, but we mostly focus on prayers of thanks for how far Alli has come and the peace that has taken over our house.  Thanks so much for everyone's continued messages of support and prayers.  They have been amazing and I'm certain give us the strength to get through days that seem never ending.

I can't believe it has been 2 weeks since writing an update.  It has been an eventful two weeks.  As of right now, Alli is doing really well.  It feels really good to be able to write that.  We met with Dr. Flamini May 8 to review the results of Alli's 48 hour EEG and discuss medications.  As of that time, she was in modified hypsarrhythmia and still having spasms.  We made the decision during that meeting to pull Alli off of topamax and to put her on depakote.  We started to wean her off of topamax May 9 and started the depakote the same day.  We didn't notice much of a change the first few days.  Alli had been and continued to vomit quite a bit with her feedings.  We were down to feeding her 2 ounces every 2 hours, only if she was asleep, and completely avoided feeding her in the morning.  On good days she was maybe getting 12 ounces of formula.  Not good.  We got the go ahead from Dr. Flamini to speed up the wean off of the topamax and to also pull back on her dose of vigabatrin.  Finally on Sunday (Mother's Day) we started to see some progress.  Alli spent the majority of the day sleeping, but she was starting to keep more food down.  More progress on Monday, she continued to keep food down, and then Monday night started to show some personality.  By Tuesday she was picking up her feet and trying to roll over on to her stomach.  She has been more awake, alert, and in general seems to be much more comfortable.  You can't imagine the relief.  We saw Dr. Blumenthal on Thursday and had a lengthy discussion regarding whether or not to insert a G-tube and get rid of the NG tube.  A G-tube is a more permanent feeding tube that is surgically placed in Alli's stomach.  It is a minimum of a 3 month commitment but would relieve Alli of having the tube attached to her face.  We are going to give it some thought.  There are many advantages to taking this route.  The one big disadvantage is that it would mean another surgery/anesthesia for Alli this year.  We had an unanticipated visit with our friends at Sibley Heart Center on Friday.  I took Alli in to have the placement of her liver checked - what I thought would be a 15 minute appointment.  We left 2 hours later in the clear and off of heart medication...yeah!!  They did an echo and said that Alli's heart function looks good and that she can go without both her lasix and her lisinopril.  We also graduated to a 2 month check up.  Excellent!

So, it is a somewhat exhilarating feeling to think that Alli may finally be turning a corner.  Of course, I have to say we have really intensified our prayers over the past 2 weeks.  My mom was here from May 8 - May 15 and she really kept us focused.  She prayed with Alli and me daily and we invoked every person we could think of to help provide Alli some relief.  In addition, on the Tuesday of Alli's appointment with Dr. Flamini, I started a novena to St. Anthony.  As it turns out, St. Anthony, who often gets credit for helping me find my car keys and other valuable items, is also the patron saint of lost causes and miracles.  So, I started the novena to him asking for him to intercede on Alli's behalf for a cure of her epilepsy.  

Today we ventured out to Summerville, GA to the First Montessori School year end picnic.  It was quite the adventure.  Mostly it was an opportunity for us to test the waters with Alli on the road.  We are hoping to be able to take a couple of trips with her this summer, so we wanted to see how she did in the car, how it was feeding her on the road, etc.  Both girls did remarkably well.  We had a nice time at the picnic.  Samantha was excited to see her teachers, Sanuja and Danielle, and ran around with her friend Salena.  She has really enjoyed school and I think will be sad for the summer break.  They tell us that she likes to stand at the door and greet everyone in the morning.  She not only knows all of the children in her class, but she knows their parents and nannies, as well.  This is most definitely a trait she gets from her outgoing father.  In the car today when we would pass trucks she would say "scuse me truck!"  She also has been expressing her opinion very freely these days.  While driving home from school one day, Samantha clearly did not appreciate Megan's (her nanny) singing and said "Meggie, please stop sweetie."  We also enjoy getting kisses from Samantha.  She has picked up on the 'mwah' sound of a kiss, so now, when she "kisses" us, she gets close to our cheek or head and says 'mshmah.'  We have to be very careful these days as she repeats much of what we say.

The results are partially in...

Just a quick update - Dr. Blumenthal called this afternoon to let us know that Alli only has mild reflux...yeah!  So, we have ruled out reflux as the cause of her vomiting and we have temporarily eliminated one of her medications.

Will let you know when we hear about her other tests.

Updates 4/25-4/28

Well, we had an early start to our day today. Alli and I were on the road to Scottish Rite by 6:30 and checked in at day surgery by 6:55. Our nurse, Beth, was able to get Alli's ph probe inserted without a problem. We had a quick X-ray to check placement, made a small adjustment, and went on our merry way. Over the next 24 hours we will track when we feed her, her position, and any episodes of vomiting. The results will help us determine the extent of Alli's reflux and what her treatment options are...pharmaceuticals vs. fundoplication. This will also help us, in conjunction with her EEG, to understand if it is the reflux that is causing her to vomit, or if it is correlated with seizure activity.We are currently waiting in the EEG lab for a patient room to open up on the floor and then we will get her hooked up and started with the 48 hour video EEG monitoring. Our hope with the video EEG is to be able to capture various events that occur during Alli's day to see if they are seizure activity or something else. If it is seizure activity it should register on the EEG. We will also confirm that she is still out of hypsarrhythmia and whether or not she is having myoclonic seizures. We are hoping they are able to get good data and that we can either continue our current course of treatment, or make some modifications, if necessary.More to come...

Well, we are in a room and all hooked up. So far Alli has had 2 vomiting episodes, so there has been a lot of action on the ph probe front. She has been resting since they attached the leads to her head, so not much action on the neurology front. Dr. Flamini will be by this afternoon for a visit. Jason spent the morning with us, which was very nice! I have all of my buttons ready to go. :)

It has been a busy day. We have pushed our red button a lot. We had a good conversation with Dr. Flamini. It was a characteristically not so great day for Alli. I am hopeful that she will have a better day tomorrow so that they can see how dramatically she can swing from one day to the next. Tonight she will have a sleep study. So we will be able to see if sleep apnea plays in to this at all. Below is a shot of what the EEG looks like while she is sleeping right now.

Everybody had a decent night last night. We had an unexpected visit from Livie's mom, Lettie. It was definitely nice to have some company and more than a few good laughs.

This morning they took out Alli's ph probe, drew some labs, and reconnected some of her EEG leads. I spoke with Dr. Flamini and Alli's EEG appears to show some modified hypsarrhythmia. He is going to spend some additional time with it and then we'll talk again. If that is the case, then we will likely max out on our dose of vigabatrin and see how that works over a 10 day period. In the meantime we will wait to hear from Dr. Blumenthal on the results of the ph probe.

We did not have the sleep study last night.

On a side note, there is a little boy with Tourette's down the hall that has been squeaking like a high pitched bird this morning. Pray for him and his mom. I suspect that her days spent dealing with that are really a challenge. Perspective is a wonderful thing.

We are in the home stretch! Alli's sleep study is under way. I have to say that whoever devised this test should have to walk around for the rest of his life (because no woman would have thought of this and then suggested it as a good idea) with a piece of tape on his top lip. I can't even believe she fell asleep, but truly by the grace of God she did. We will be discharged tomorrow morning.

As of now we are increasing Alli's vigabatrin to 500 mg in the am and pm. I suspect she will be in hibernation much of the weekend. She has 10 days to 2 weeks to see if that works and then we will reevaluate options, which right now appears to be depakote. Based on his preliminary impressions it appears that her IS is morphing in to another form of epilepsy, as she had multiple seizure events with a frontal lobe focus. These events were manifested primarily by eye fluttering.

We are waiting to hear from the GI on the outcome of the ph probe.

Below are some photos of Alli from earlier today and one of her connected for her sleep study. She had a great afternoon. Thanks for all of the prayers and well wishes. We feel so blessed to have such supportive family and friends.

Just waiting on our discharge paperwork and we will be on our way!

Obstacles to Trust

When you are dealing with science and prayer it is sometimes hard to differentiate where your trust lies.  Certainly I am praying for Alli to have relief, but I have to trust in her doctors to help bring her that relief through various tests, treatments, medications, etc.

Over the course of the past few weeks we have really struggled to keep food and medicine in Alli and at times she just looks down right miserable.  That isn't even an exaggeration.  We are feeding Alli 2 oz. at a time every couple of hours in hopes of just getting her minimum daily requirements in to help keep her hydrated and help her tolerate her seizure medicine.  We haven't  been able to figure out what is causing her discomfort - is it seizures?  is it respiratory?  is it digestive?  Her symptoms haven't been consistent and we have played with the variables every way we can think of to help alleviate the situation.  So, earlier this week, we had our monthly check in with Dr. Blumenthal, our GI specialist.  Given our most recent struggles with Alli's ability to tolerate food he suggested that we have a ph probe done during Alli's 48 hour EEG.  A ph probe is dropped through her remaining free nostril in to her stomach and measures the stomach acid to determine the extent of her reflux.  In order to run the test she has to be off of reflux medicines for 5 days and they will give her 2 apple juice feeds.  Now, I have never thought Alli had reflux, but I do follow doctor's orders and have given her 2 doses of reflux medicine every day since she was admitted to the hospital back in November.  Therefore, watching her spitting up/projectile vomiting get worse over the course of these weeks, I was very hesitant to pull her reflux medicine.  What if her vomiting got worse and she dehydrated?  What if she couldn't keep her seizure medication down?  What if I was wrong all along and she really does have reflux and this is the one thing that is helping her?  How could it possibly be safe and ok to pull reflux medicines in a child who was already spitting up/projectile vomiting on a regular basis?  I actually articulated all of these things to both our neurology nurse, Gigi, and our GI nurse, Janet.  I also went so far as to suggest that they just admit Alli to the hospital, pull her meds, and keep her there for monitoring, as I was sure this would be a disaster and she would be dehydrated and in some form of constant state of seizure due to all of the circumstances mentioned above. So, yesterday I pulled her reflux medicine in the morning and she has now gone almost 36 hours without it.  Since then we have noticed a reduction in spit up and she has tolerated all 3 rounds of medicine.  I am hopeful that this pattern continues as for the first time, in a long time, she seems much more comfortable to me.  She is still having intermittent spasms and we will address those this coming week, but for the time being, she seems more comfortable and that was all I really wanted.

So, how does trust fit in to all of this and to whom do I assign responsibility for what has transpired over the last day and a half?  Well, earlier this week, I specifically prayed that the Lord would inspire both Dr. Blumenthal and Dr. Flamini to be able to work through this and help Alli.  They in fact are very good friends and honored my request to consult with each other and with both GI and neurological impacts considered, they decided this test was the way to go.  So, I had no other recourse but to trust that they made the right decision and that the Lord would take care of us.  Either Alli would tolerate the reduction in medicine ok, or that He would make it such that we could get her treated quickly and safely, if necessary, over the weekend.  What was the obstacle to trust?  Fear.  I was afraid that this decision would result in a situation that I couldn't handle and would cause Alli further distress.  So, how do you balance overcoming the obstacle to trust and doing your job as an advocate and making sure the doctors hear your concerns and take them in to consideration?  I find myself questioning our doctors all the time.  When you're dealing with so many specialists for 30 minutes at a time, it is hard to make them understand what the full picture looks like outside of their office.  I have no doubt that every one of them wants to help Alli (and probably go halves on a hit man for me) and I usually leave with some additional suggestion for treatment or medicine, but what I really want is for someone to look at her full picture and try to connect the dots.  Someone who can look at her cardiac tests, neurology tests, GI tests, and medicines, and try to correlate what is responsible for what is going on with her so ultimately we can provide her with a safe way to not feel miserable all the time.  In this instance, I asked my questions and communicated my concerns and at the end of the day was left with the decision of the people who I have to trust have Alli's best interests at heart and have been inspired to make the ultimate decision.  So we move forward confident in that decision and face the fear associated with her treatment, and so far He is taking care of us, most importantly Alli.

Living away from family is hard.  It always has been.  I enjoy Atlanta, but miss being surrounded by family and friends from home very much.  We were fortunate this past week to be visited by my cousin on her way back from Florida and our dear friends Raylene and Len Yarnell.  We had a wonderful visit with Angela and Steven.  Raylene and Len showed up just in the knick of time with that feeling of home.  They stayed with us for two nights and I have to say, they left us better than they found us.  Samantha and Len were fast friends and Raylene was a much needed source of motherly support for me during a very trying week.  We love having company, even when times are stressful and hope to have many more visitors.

Samantha is doing well.  She is challenging at times, but we are working through it.  She continues to be quite the little baker at school and brings us biscuits and pumpkin bread almost every day.  The ducks in our local park have really enjoyed her biscuits (which can often resemble hockey pucks), but we keep the pumpkin bread for ourselves.  It is really quite delicious!  She enjoys referring to herself and others as 'Sweetie' and  'Sweetie Pie.'  It is quite humorous when she refers to adult men this way.

So, coming up this week, we have a cardiologist appointment on Tuesday, complete with Echocardiogram, the 48 hour EEG, and the ph probe.  It should be quite a week and hopefully one that will bring us some answers regarding Alli's seizures.  Oh yes, and let's not forget our PT and OT appointments.  Never a dull moment :)

Have a good week!

Philosophy

Today I told my mom, "some days (today, for example) I feel like I'm living a college philosophy thesis paper."  The premise for my statement came from the end of a broadcast I was listening to on the way in to work.  Yes, a few times a week I listen to EWTN on the way in to work.  In fact, I made Jason renew our previously free Sirius subscription just so I could listen to EWTN.  Anyway, the topic of today's discussion was the HHS mandate and the requirement to provide free coverage for prenatal testing.  A seemingly innocent enough offering, until you start to examine some of the statistics associated with the outcome of prenatal testing.  First of all, prenatal testing does not just cover screening for genetic abnormalities.  I will acknowledge that there are several beneficial outcomes from prenatal testing, including glucose screening for gestational diabetes, tracking fetal weight, etc.  However, it must also be acknowledged that one of the most negative outcomes of prenatal testing is the decision to terminate pregnancies where there is the possibility of genetic abnormality. So, I am not going to get on a high horse about abortion. Thankfully, Jason and I never even had that discussion. But, when I look at our experience with prenatal testing I struggle with whether I would do it again. We can't forecast and prepare for everything. Certainly we can prepare ourselves for some things, but not everything. And so, I sort of find that at times, I resent what the testing didn't show. I was prepared for heart issues and down syndrome,but seizures and brain damage have thrown me for a loop. And isn't it that way with all children? So, all of your genetic prenatal testing is normal, but then your child develops an illness, or has an accident, then what? I almost feel like dealing with the unexpected when you have no expectations is far easier than dealing with the unexpected when you think you have the blueprint laid out in front of you. So, I'd like to say that I wouldn't do it again. I'd like to say that this experience has taught me that we are in this to be parents to whatever kind of child we are blessed with raising, that the peace of mind that everything is "normal" is in fact temporary and limited. Only time will tell.

Alli is doing well. She has had a busy couple of weeks. She finally met with the infamous Dr. Jeannie. Some of you may remember Dr. Jeannie from an earlier post. She is a developmental pediatrician that specializes in Down Syndrome and she consulted with me by email the weekend Alli was initially admitted for her infantile spasms. She has been an invaluable resource to us, especially where referrals are concerned. I also feel that she is the one physician that looks at Alli globally. Our pediatrician has made it very clear that he can only deal with general pediatrics - coughs, colds, strep throat, etc. our specialists are good for their specialty but can be guilty of tunnel vision. So, I view Dr. Jeannie as Alli's personal Dr. House. We left our visit with a referral to a pulmonologist, sensory therapist, ear, nose, and throat specialist, and speech therapist. Pulmonology and Sensory were the immediate to-do's. ENT and speech are intermediate to-do's.

From a general development perspective things are going well. Alli is rolling from her tummy to her back and she is transferring objects from hand to hand. We continue to work on supported sitting and head control. She abandoned bottle and spoon feeding with her upper respiratory infection, but did manage to take some applesauce off of the spoon earlier this week. We met with the feeding specialist who feels that once we have her more medically at bay that her oral feeding skills will return. So, we will continue to try to feed her by mouth and be thankful that we have the feeding tube to supplement her for both nutrition and her meds. We are seeing lots of smiles from Alli these days. They steal my heart, even when they are followed by a spasm. We continue to struggle to control her spasms. It seems based on her personality and developmental progress that the hysparrhythmia has not returned, however, she is definitely still having jerks that resemble myoclonic seizures. We increased her dose of topamax this past week and will increase it again next week in the hopes of getting that under control. Alli will have a 48 hour eeg and sleep study April 25-27. This should hopefully give us greater perspective about her seizure activity. Next week we have an appointment with GI, PT, and OT. We also have a meeting with our new Service Coordinator from Babies Can't Wait and we'll have a developmental assessment done on Wednesday (yeah!!). I am very excited about our new service coordinator.

Everyone else here is doing pretty well. We enjoyed our visit with my parents and Aunt JoAnne. We also enjoyed a visit with Uncle Tom and Aunt Linda. We had a Sunday dinner the likes of which I wish I could have every weekend. We grew up with family dinners at my grandparents, or having grandparents at our house, and I miss that. So, to have all of that family around my dining room table was so awesome. To have Aunt JoAnne here was humbling. Though we are in different stages of life, we share much in common. She brought me a book "Jesus Calling." It has daily reflections. She told me that at times it felt like it was speaking directly to her. I have to say that I share that same sentiment. Each day I read a reflection and follow up with my novena to Padre Pio. Both have been sources of inspiration in terms of lending perspective to day to day life in our house. We had a nice Easter. Our friends John and Valerie joined us for brunch. Later in the afternoon Samantha and I had a date at Peachtree Dekalb airport. She has been obsessed with planes, so we visited the playground near the airport so she could swing and watch the planes take off and land. She also enjoyed her Easter basket and Easter egg hunt. Her dad (the Easter bunny) lovingly (and skillfully, I might add) hid her eggs in the front yard. She was super excited to open them and discover her treats - underpants, cheddar bunnies, and gummy bunnies.

We look forward to visiting with my cousin Angela and her husband Steven tomorrow and Raylene and Len Yarnell on Wednesday night! Alli also has her first play date tomorrow...yeah!!

Have a great weekend!