Wednesday, July 13, 2016

Blessing in a Box of Books... and We're Home!

Dear Family and Friends,

We're home!  Joseph's heart catheterization went very well and he is now sleeping in his own bed, recovering.  He was up and ready to go around 4:45 this morning, bright eyed and bushy tailed.  We left Damien with grandma and took Joseph down to Ann Arbor.  A familiar cardiologist and nurse practitioner met us at Mott and walked us through what would happen.  The procedure had to be done under general anesthesia, and the whole thing took about 3 hours, with 4 hours recovery.  From what we were told, things look good and Joseph is an excellent candidate for the surgery that is scheduled on August 1.  This is fantastic news, but it's still not easy to face the coming surgery after today's reminder of "hospital Joseph."  Joseph is incredibly strong and brave, but he's also pretty smart.  The distractions of toys and music don't work quite as well when he's so aware of what's happening and knows where he is.  When we first were reunited with Joseph in his recovery room, he was pretty unhappy and uncomfortable.  We asked one of the nurses if they might have a book Joseph could look at, and thankfully, they were able to locate not only one book, but a whole box full of them.  Joseph lit right up, looked at just about every one, and drank from his sippy cup like a champ.  We see God at work so clearly in the "little" things like this.  Thank you for your prayers!

Please continue to pray:
- for no complications from this procedure
- for Joseph to remain healthy (he has just a tiny cough, so please pray that this doesn't develop into anything more significant)
- for peace of mind in our preparations for heart surgery

St. Joseph, pray for us.
St. Francis, pray for us.

In gratitude,
Rachel, Nick, Joseph, and Damien

Monday, July 11, 2016

Update and Prayers

Dear Family and Friends,

It’s been a while!  When we last posted, we were asking for prayers for Joseph’s ear infections.  Although he’s had quite a few, thankfully he did not need to have tubes.   And now that we’re in the summer months, we’re hoping that cold/flu season is behind us!  The boys have both been healthy and growing like the weeds in our front lawn… seemingly overnight.  Joseph is walking very well in his walker and his confidence increases daily! He is now able to cruise along furniture unaided, stand behind a toy grocery cart and walk, and walk up gradual slopes in his walker…all of which he was unable to do six months ago.

Damien and Joseph with Uncle (Fr.) Mark,
during Uncle Mark's visit back to Michigan :)
We are posting at this time not only give you an update about Joseph, but also to ask for prayers.  We have scheduled Joseph’s third and (God willing) final open-heart surgery in August. When Joseph was diagnosed with his heart condition called HLHS we were told that three surgeries were required. At the very beginning of his life with all the other challenges Joseph faced, a final open-heart surgery down the road was light years away in our minds.

We are now however fast approaching this upcoming surgery that is scheduled for Monday, August 1st. The estimated recovery time in the hospital is two weeks.  To adequately prepare for the surgery, Joseph is having a heart catheterization this Wednesday, July 13th to measure pressures and blood flow through-out his heart. Please pray for a successful outpatient procedure this week.

In regards to the open-heart surgery, as the day approaches we will again be writing to everyone to specifically pray a flying novena to the Infant of Prague. All are welcome to join us in this specific prayer. It has been said before that sometimes we chose Catholic Saints and devotions, and sometimes they chose us. The Infant of Prague is one of those instances where the Christ-child chose us and we have continually used this novena throughout all of Joseph’s surgeries.

As far as logistically planning for this surgery, our newest challenge is with Joseph’s little brother Damien (who will be one year old on July 16th!). Over these last three years and our many hospital stays with Joseph, we always have been able to wholly focus on him. However now with Damien, the hospital stay is going to be a bit more challenging in attempting to be present to both our precious boys and this is where we need the most help for anyone who is willing.

We have been very fortunate to have people offer to help us over the course of Joseph’s hospital stays and as Rachel and I have prayed about those already offering and those who might, the most concrete way to help in this time of need is to come and be present with one of our boys so we can focus our attention on the other for a time.   Please contact me (Nick) if you feel you’d like to be present to us in this way.

We will be posting more regularly in the coming weeks – to give you updates about the pre-op procedures,  to give updates on Joseph’s progress, but most of all to ask for your prayers. 

St. Joseph, pray for us.
St. Francis, pray for us.

In gratitude,
Nick and Rachel

Friday, February 5, 2016

Update and Prayers

Dear Family and Friends,

No news is always good news here on Joseph's blog. We are grateful for all the ways that Joseph is continuing to grow and development, especially alongside his little brother Damien. We are thankful to report that Joseph's hip surgery in November was a complete success!

As you might remember Joseph was in a hip brace for four weeks through Christmas after his surgery in mid-November. We had our four week follow-up appointment two weeks ago and everything looks great. His orthopedic surgeon continued to stress the importance of daily physical therapy with Joseph to strengthen the muscles surrounding his hips.

One of the areas that Joseph does need prayers in though is his recent double ear infections. In the last three months alone he has gotten two different sets of double ear infections. He is currently on a antibiotic (second go of it) to try and get rid of this second infection. If he is unable to kick this infection and receives another ear infection within the year, he will have to have tubes surgically placed in his ears.

Now in the grand scheme of Joseph's journey, this is a minor surgery compared to others but Rachel and I are asking for prayers for two reasons -

1. Anytime Joseph has to have anesthesia for a surgery it can put an unnecessary strain on Joseph's heart. Already in Joseph's little life he's been under more times than most people in a entire lifetime.

2. We don't ever want Joseph to experience a life of "just one more thing wrong." Our son already has never gone more than six months (or less) between surgeries and we just want to give him rest and peace.

In the end, we are asking for the Lord's will to be done and the strength to overcome challenges with Joseph's care. Thank you for your continued prayers for him.

St. Joseph, pray for us.
St. Francis, pray for us.

In gratitude,
Nick & Rachel


Sunday, November 15, 2015

Happy to be home...

...or at least at Grandma and Grandpa's, since we're staying close to the hospital for a couple of days.

Joseph was discharged on Saturday night after his hip brace was completed and fitted, thanks to all of the prayers. The doctors asked us to continue monitoring Joseph's fluids at home, but said that other than that, he was doing great!

Joseph has had a very good first day out of the hospital... Going for walks in his stroller, watching football on TV, kissing his brother, and reading books. He's not quite back to himself yet, but there were quite a few smiles and he is definitely getting better.

Joseph (and we) are so blessed by your prayers! Please continue to pray for a speedy recovery.

St. Joseph, pray for us.
St. Francis, pray for us.

In gratitude,
Rachel, Nick, Joseph, and Damien

Friday, November 13, 2015

Quick Update

Dear Family and Friends,

This will be another quick update, since the days are long and the nights are short in hospital time...

To sum things up, Joseph's surgery yesterday went remarkably well but recovery has been more challenging.  The orthopedic surgeon took out the hardware from his previous hip procedure, and deepened his right hip socket.The doctors measured him for a brace and decided that he would be okay with that instead of a spica cast.She told us that we couldn't have asked for a better outcome... Praise God!  Pain management has been more difficult, especially with Joseph's general anxiety with being at the hospital.  We've had good moments (such as a visit from Legend, the therapy dog) and not-so-good moments (finding out his hip brace is the wrong size), and are just praying that each day will be better for him and that soon we'll be headed home.

Please pray:

- for Joseph to be filled with peace and free from anxiety
- for effective pain management and wisdom for the doctors
- for the hip brace that Joseph needs to go home to be ready for him tomorrow, so that it doesn't delay discharge

St. Joseph, pray for us.
St. Francis, pray for us.
Sts. Damien and Michael, pray for us.

In gratitude,
Rachel, Nick, Joseph, and Damien

Thursday, November 12, 2015

Brave Little JoJo

Thank you all for the prayers! Surgery went incredibly well. Joseph is recovering and almost asleep...we are praying for a restful night and will post more details in the morning.
In gratitude,
Rachel, Nick, Joseph, and Damien

Sunday, November 8, 2015

Surgery Ahead... Please Pray

Dear Family and Friends,

Joseph will be having the hip surgery to deepen his right socket on this Thursday (Nov 12).  We dread the thought of Joseph having to undergo yet another surgery but, based on what all of his doctors have told us, trust that it's for the best... a short-term setback for a long-term gain.  

Please pray:
- for peace and grace as we prepare for surgery day
- for wisdom and guidance for the doctors, nurses, and anyone else involved in Joseph's care
- for a successful surgery, brief hospital stay, and rapid recovery

As has become our "Surgery Day Tradition," if you'd like to pray the Flying Novena with us, it can be found below.  Thank you so much for your support and prayers - we'll keep you posted on how everything goes.

St. Joseph, pray for us.
St. Francis, pray for us.
St. Damien and St. Michael, pray for us (calling on the little bro's patrons, too)

In Christ,
Nick, Rachel, Joseph, and Damien


NOVENA TO THE INFANT OF PRAGUE

(traditionally prayed for 9 consecutive hours in a single day)

O Jesus, Who hast said,
ask and you shall receive,
seek and you shall find,
knock and it shall be opened to you,
through the intercession of Mary,
Thy Most Holy Mother,
I knock, I seek,
I ask that my prayer be granted.

(Make your request)

O Jesus, Who hast said,
all that you ask of the Father in My Name,
He will grant you. 
Through the intercession of Mary,
Thy most Holy Mother, 
I humbly and urgently ask Thy Father
in Thy Name that my prayer be granted.

(Make your request)

O Jesus, Who hast said,
"Heaven and earth shall pass away
but My word shall not pass",
through the intercession of Mary,
Thy Most Holy Mother,
I feel confident that my prayer will be granted.

(Make your request)