I apologize for the delay in posts.  It has been quite busy.  Alli is still in the hospital.  We had hoped it would be just a short stay, but her condition became more complicated the day after she was admitted and she needed to be transferred to the PICU at Scottish Rite.  She has been on and off of bi pap during her stay and we are trying to get her ready to go back to inpatient rehab.  As a result of her illness, she has lost much of the progress that was made during her original stay in rehab.  So, we're hoping to touch down there before we go home so that we can jumpstart her rehab process.  She has had an eeg during her stay. It is still abnormal, but shows no hypsarrhythmia, so she is tolerating the wean off of one of her seizure medications.  That is great!  We will still maintain the other two medications for now, since the abnormal eeg indicates that she is still at risk for seizures.  However, the fact that we aren't seeing seizures means that the medication is doing its job.  Thank God!

I was able to take a quick (24-hour) trip back to Michigan for my sister's wedding.  Jason's parents had made plans to visit us, as well as Jenn, Michael, and Brayden, over that weekend, so I left Jason and Samantha in good hands.  Josh did great on the trip and enjoyed meeting our Michigan family and friends.  I was just happy to be able to be a part of Carrie and Luke's special day.  Samantha got along famously with Brayden and enjoyed being spoiled by her grandparents and aunt and uncle.  Jason's parents have been a tremendous help to us the last few days.  Their timing was perfect.  Although they had hoped to catch Alli while she was at home, they have spent a lot of time bonding with Samantha and Josh while Jason and I alternate shifts at the hospital.  We very much appreciate everything they have done for us since they have been here.

So, now we are in back to school mode.  Samantha will meet her teacher, Ms. Cara, next week.  Then she starts back the following Wednesday.  I am happy to have a routine back in place for her.  Our nanny, Megan, has taken a job as a pre-school assistant at the Morningside Day Out.  We are sure they will love her there just as much as we have loved having her with us!  She will continue to work for us as we need extra hands, as will Nicole.  Nicole started with us earlier this summer to give Megan a chance to look for a new job.  The kids love both of them, which is great!

Our condo is under contract and scheduled to close on Monday, August 5.  Please continue to pray that all goes well as we complete that transition (and transaction).  So many memories there - from our engagement to starting our family.  It was such a great little place.  I wish it had been bigger so we could have lived there longer!  It is the first of many steps in simplifying our life.  Given how unpredictable Alli's care can be, we are trying to simplify things as much as possible.

We hope everyone is enjoying the rest of their summer!  We'll try to send more regular updates.  Please know how much we appreciate your prayers and offers of help.  We will especially need the extra prayers as we head in to respiratory season.  We had hoped to get Alli through the summer without complication and this hospitalization will make for a very challenging fall and winter given the time it has taken away from the healing process her lungs very much need.

annnnnnnd....we're back...

in the hospital.  Alli officially made it home for a week.  And what a busy week it was!  Full of therapy evaluations, doctor appointments, and just enough time to catch a cold.

Her schedule looked something like this:

6:00 am - meds

8:00 am - meds and respiratory treatment

10:00 am  - meds

12:00 pm - meds

2:00 pm - meds and respiratory treatment

6:00 pm - meds

8:00 pm - meds and respiratory treatment

10:00 pm - meds

12:00 am - meds

Mixed in to that were her doctor appointments and outpatient therapy evaluations, time to do PT, OT, and pleasure feeding at home, nursing Joshua, unpacking from the hospital, grocery shopping...yikes!  Hardly a moment to sit down.  We are looking forward to getting our home nursing in place once we are done with this hospital visit, as the current schedule leaves very little time for Josh and SJ.  We did have a couple of nice nights with some family time after dinner.  I think that was my favorite part of the whole week.  We had all 5 of us in the living room.  Jason was snuggled up with Samantha watching Curious George.  Alli and I were down on the floor working on some of her exercises and Josh was next to us building some core strength in tummy time.  We are looking forward to more of that.

We met with the pulmonolgist this week.  We have a new one.  She is wonderful and had some great tips for us.  We have seen her a few times in the hospital and she has always taken great care of Alli...and let's face it...she takes good care of mom too.  We have been struggling to keep a couple of Alli's meds down and she had a tip for us that has been successful for several days in a row.  Huge relief!

We also met with our ENT.  We love her too.  She is full of personality and knows her stuff.  Alli will likely need ear tubes at some point, but given her sedation/anesthesia history, no one is in a big rush to put her under.  At some point we will have to break down and do it, as she has fluid built up behind at least one of her ears.  We will have a sedated hearing test at the same time.  It seems she has hearing loss in her left ear and they are not able to conclude on the right ear.

Currently Alli is in the hospital, not in icu (thankfully!), with a cold of some sort.  We were managing well at home, with the exception of her being able to cough up what is sitting in her lungs.  So, we are here for the respiratory therapy - deep suction and round the clock breathing and vest treatments.  Our goal is to avoid the ICU and make this a short stay.  We'll hopefully just need to get her over a hurdle and be on our way back home.  Please say some prayers that this is resolved quickly and without incident for her.

We had another offer on our condo this past week.  This one seems more promising than the last.  Samantha and I have been saying the novena to St. Joseph and will continue to do so, until the paperwork is finalized.  It will be a relief to not have that hanging over our heads any more.

That is the update on our end.  We said goodbye to Grandpa John this past week.  He was so wonderful to have around.  Eager to help in any way we needed (and in some ways we didn't know we needed) and always so flexible.  We hope he (and nanny) come back soon!

Alli is Coming Home!

After 4 long months, Alli is coming home on Friday!  We are excited to have our family back together under one roof and anxious to re-learn our new normal.  She has made great progress in rehab and we are eager to see how things evolve for her on an outpatient basis.

Thank you for all of the prayers and support!

Birthday Gifts

Birthdays have always been big celebrations in my family. That doesn't mean they were always an extravagant affair, but they were always celebrated with family and friends. There was always cake and ice cream and plenty of special packages on that day. I am ashamed to admit that it was only in my more recent adulthood that I got over the whole 'special package' phenomenon. Who doesn't like a little birthday surprise? I still like it, I just don't place as much importance on it as I once did.

The attached photo is from Alli's birthday last year. What a celebration! As I prepared to celebrate Alli's birthday this year it started to occur to me that while we will have gifts for her today, she has given us (me, Jason, Samantha, Joshua, and everyone that knows, loves, cares, and prays for her) invaluable gifts over the course of her short life that could never be wrapped in a box with a fancy bow. They are wrapped in her very being. Her humble and often quiet suffering has taught us the following lessons...

1. We never give up on life. We were excited when we found out we were pregnant with Alli and no matter what challenge has been laid before us, medical or otherwise, we have always tried to act in a way that dignifies her life.

2. God is listening and does answer our and your prayers. There are days when we should be exhausted, frustrated, and ready to give up. It is on those days when your prayers sustain us and give us the strength, determination, and focus to keep moving forward. Alli's very life is a manifestation of prayer.

3. Humility. Alli's condition(s) have brought us in to a circle of life in which we can be nothing but humbled by the challenges and strength of the other children and families around us. There are plenty of days that we could sit and wallow in pity for her, however, on those days we look for everything about her that we have to celebrate....that she is getting stronger, that she is responding to therapy, that she is staring to become aware of her surroundings and her family, that her health is improving, that she is breathing without assistance. These are tremendous achievements for her.

4. Compassion. There are stories in the ICUs and rehab that would rip your heart right out of your chest.

5. Our hearts are forever changed by Alli. Jason is the greatest manifestation of this. He is a man that has always enjoyed and performed well in his work. He was eager to meet the needs of his clients and the firm. Always quick to pack up his computer and get off to the next meeting. While he remains focused and committed to that work, it is touching to see him pack up a little more slowly, linger at Alli's bedside, and be happy surrounded by his family - even if it is only for a short while each day.

I am sure there are many more gifts that I could and may add to this, but the bottom line is that the gifts she has given us these two short years pale in in comparison to any gift we could give her. I am certain that she is saving our very souls and keeps us focused on what is truly important in life.

So, happy birthday, Alli! I am so grateful for and humbled by your life and the lessons you impart on me every single day. I love you, sweet girl.