Last Video of Dominic before the change

So we are recovering here, two more people came down with the illness last night, should be fun travelling right?  I have to make this short as I have a whole lot to do before we leave.  Right now the living room looks like a bomb of clothes exploded, it is overwhelming and intimidating.  I am sure it will all come together, but there is a whole lot to do in a short amount of time.

Our journey begins at the beginning of  advent and hopefully ends at the joyous time of Christmas!  We are travelling to a new place just like Mary and Joseph had to, there is so much to ponder at this time of year!    There is peace as well as nervousness (does that make sense?). 

We are overwhelmed by all of the acts of kindness, from all of the help we received while we were sick (really, if you get sick around here, you will have a caravan of people with wonderful rememdies as well as meals to help see you through), it has all been amazing, you all are simply the best!  For the gifts we have received, and you know who you are, we cannot thank you enough, it was unexpected but will help cover travelling expenses.  Thank you to the Schoenstatt family that is ready to support us with their army of prayer warriors and have asked to have a picture of Dominic placed in the shrine while we are gone.  And to all of the people who are committing adoration time while he is in surgery, a huge THANK YOU! And then Boston, we are so touched by the group out there!  They are ready to support us out there too, it really is amazing the kindness you experience when going through a hardship. 

I would like to ask for one very special intention right now.  Please pray for the Juhasz family as they also pack and prepare to be away from their home during this advent season.  These people are so dear to our hearts!  They are the type of people that after you meet them for just one time, you feel as if you have known them forever.  We are so grateful for their sacrifice!  Included in that, please pray for their parents who will be taking them in, for their generosity, we are so grateful too!  Please pray for a blessed visit with their parents and for peace and patience for all.

I will leave with one final video of Dominic.  He is not doing much in the video, but his sister Philomena is summing up perfectly how we feel about him. It was such a sweet interaction!
Next time I will post, we will be in Boston!!!

 

Seven down, three more to go

We are still battling the stomache flu around here, so far seven people have had it, including Dominic, three have not.  I came down with it yesterday and am hoping to get stronger today so I can pack.  It seems like an impossible task right now! At least Dominic has gotten it and we will know that he won't have it during surgery time. 

I really want to be able to take more pictures and video of him before he is changed forever!  He has been doing so well with his eyes, he has been seeing us and responding to our smiles.  He always uses the eyes together and sees things even a little far away.  He even sees his bottle every time and holds it now.  There are so many things he is doing lately, it makes us worried that he will not be able to do them after the surgery, that somehow, he will be set back.  I know he will be in the best of care, it's just such major surgery.  Thank you for the prayers and help, I will post hopefully tomorrow, one last video of him before he is changed forever!

The Countdown...

I hope everyone had a great Thanksgiving weekend, I know we did!  I am looking forward to posting with pictures about it all.  We went to my home in MN and met my two new nephews!  One was born a couple of weeks after Dominic and the other was adopted from the Ukraine and came home at the same time that Dominic did.  It meant a whole lot to have people who have been praying for Dominic to be able to meet him before his surgery.  Now that we have gotten through Thanksgiving, the countdown has begun before we leave for Boston and there is a lot of excitement/nervousness/anticipation???, you name it we are feeling it, all of us at different times and to different degrees!  To top it off we all have come down with the stomache flu and so I end asking  for your prayers for this intention.  My husband asked me to post, he asks that you please pray that Dominic does not get sick and that we are able to continue with the plans we have made.  So far it's good with Dominic and we are in lock-down mode around here, noone is going anywhere, we just can't risk contracting anything else.  So please pray prayer warriors for a speedy recovery for the family and protection for Dominic before we go to Boston.  Thank you!!

Surgery

I beseech you, for the love of God, because He doesn't want to do you any harm at all. Love Him a great deal because He wants to do you a great deal of good. Walk simply, with certainty in your resolutions, and reject the reflections of spirit concerning your suffering, treating them as cruel temptations. St. Padre Pio

These words more than any other I will tuck away deep into my heart.   As well as my mother's instruction to me when I was struggling.  She said," Can you say yes to this cross in this moment?  Only this cross at this moment, don't look ahead or back, only at the cross before you and can you say yes to embracing it?"  I am blessed to have such a mother.

A number of peole have asked about the surgeon we will be seeing and the procedure that will be done.  I am attaching the video that we saw when we first learned our son had an encephalocele.  This video gave us so much hope, because here was a boy that was 10 months old and he was LIVING with this condition.  After seeing the video we sent an ultrasound image to the doctor who called us the next day.   He reassured us that everything would be o.k., that he had seen this before.  He gave us so much hope!  The video shows what is done in the surgery and it is quite similiar to what will be done with Dominic.  For those of you who are very  inquisitive and brave,the full surgery is also posted on you tube. 

http://www.youtube.com/watch?v=x67SqlVhUNw&feature=relmfu

Children are a Gift

I was thinking of what a gift Dominic is when a song that a friend had wrote came to mind:

"Children are a gift from the Lord

Fruit of the womb it is a reward

Like arrows in the hand of the warrior

Happy the man who's quiver is full

God has blessed me with you..."    Doug Barry, Radix

Lo, kchildren are an heritage of the Lord:

                                                 And lthe fruit of the womb is his reward.

                                                  Psalm 127:3

The second definition of heritage is:

her·it·age/ˈheritij/

Noun:

Property that is or may be inherited; an inheritance. Valued objects and qualities such as cultural traditions, unspoiled countryside, and historic buildings that have been passed down from... So I was thinking about those words, gift, valued object, and reward and all of those things are given out of LOVE.  God has given Dominic to us out of his great LOVE.  I started to think even more about the idea of gifts and realized, we were not only given a gift, but a rare gift.  Rare gifts are treasured!  What Dominic has done for us spiritually and on a human level is part of God's perfect plan for our family. When we first saw the ultrasound of our child and heard he was a boy we were filled with joy.  That joy quickly turned to fear and sadness as we were told that he may not live past a couple of hours and if he did, that he would most likely be severly  handicapped.  Our gift at that time was only a diagnosis that was scary and unknown.  We had no idea if he would live, we had no idea how he would look, we did not know how well he would function.  At the same time that we were worrying about what was to come, we were not able to see the great joy we would experience from this gift.  We were not able to see the sweet Dominic smiles, the fun giggles, or the affection he would show our family.  We were not able to see this, because the gift had not been opened yet.  I often wonder if I would change things if I could.  I have thought that if I could I would hope that my son would not have to suffer, and yet it is precisely this mystery of suffering that bears so much fruit.  So, in the end, the answer is no.  The answer is no because I don't want to change this perfect gift that God has given us.  He made him especially for us and for a very special purpose.  I wish I could send this message out to each couple that hears a scary and unknown diagnosis for their child.  Your child is a gift that is not open yet.  Have faith that this gift is given out of LOVE!  Look forward to discovering what that gift has in store for your family and if your gift happens to be rare, know that they are precious treasures!

Pictures of Dominic at his OT therapy.  I am eternally grateful for the therapists he sees at New Berlin Therapies.  They have been my greatest support in so many ways since Dominic has been born and they help me celebrate all of his victories!  You can tell Dominic loves them too!  Unfortunately I only got one therapist in pictures so far, I hope to get the others after we get back from Boston and start up again!

We have been doing a lot of pictures and video of Dominic before his surgery.  We will be looking forward to hearing his giggle and seeing his smile again!

Everything is good to go for Boston!!

We are good to go for Boston!!!  Thank you, thank you, thank you for the prayers!  We owe so much to our good Dr. Meara for working very hard to make it all work out, as well as our case manager who has been amazing!  I will post a little more info later, but for now I will leave you with Dominic's smile, we are so grateful!!(ignore his obnoxious mother, she is in love :))

Cat Scan

Dominic needed a cat scan today. Let me just preface this with saying, I don't do well when my babies hurt! Today was no exception. I was told Dominic needed to be sedated and so I would not be able to feed him for four hours. That is a lot of time for him as he is used to eating pretty much on the hour. His condition, (ONH) makes it difficult for him to monitor his need for food, drink and sleep. Anyways, thank you for all of you that prayed us through that! Dominic did real well with that, much better than I had anticipated, even to the point of being giggly in the waiting room. There was only about 15 minutes of true crying because of the hunger. Then came the actual procedure where they had to find the vein for his IV. This part hurt both he and I. Nurse: I am having trouble getting a vein, let me try here on the arm. (Dominic is screaming while she is doing this).

Other nurse: Oh dear, it went through the vein, we need to try again.

Nurse:That's not working either, let's try his foot. (Dominic is really screaming)

At this point I am overwhelmed with sadness, I cannot help him...

Other nurse: Mom, if you would like to try and comfort him, you can...

The silent hot tears just started coming, I couldn't control them. I closed my eyes and said, "St. Pio and St. PHilomena, I gave him to you both as your special child. Please, please interced for him at this moment. Do for him what I cannot."

An incredible warm peace fills me, truly it was peaceful

.

Both nurses: We got it in Mom!! No more worries!

Thank you God for meeting me at this cross and taking over.

****PLEASE PRAY AS TODAY THEY WILL MAKE THE DECISION ON INSURANCE AT 3:00***

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