Well, although this comes a little late...Topher did have his interview this past Tuesday in Washington D.C. with the Admiral of the Navy and he got the job!!
We are now a Navy family! That's right all of you!-be afraid because my husband is a big bad sailor!! (or at least...he can pretend he is now)
He is now considered a Full Time Nuclear Power Instructor at the Nuclear Power School in Charleston, South Carolina. We'll be finishing his two years of schooling to get his Bachelor's here in Salt Lake, but then once he graduates, we'll be moving to S.C.!! We are very nervous and excited but most of all we feel so so blessed. This couldn't be a more opportune time for this miracle to play into our lives. Heavenly Father is truly watching over us and blessing us with sure footing every step we take!
We are so excited for the adventure that this promises to be for the next 6 years!!
Congrats to Topher, he is amazing!! And a large Thank you to all of you that were praying and fasting for him the past few days!
5.24.2008
Navy Family!!
5.18.2008
It Was the Best of Times...It Was the Worst of Times...
It was a very quiet blessing, (Topher wouldn't speak up!!), but after collecting the different snippets that everyone heard, I have gathered that Topher blessed little Grace that she would have a healthy heart, whether it be transplant or on her own, and that she would live a long time. He blessed her that she would attend and excel in school and that she would bless the lives of those she met. He blessed her for a love of her familiy and a charitable spirit.
Thank you so much to all of you that have helped us physically, emotionally and spiritually, whether by bringing us dinner or saying constant prayers for us in your hearts. We know it has a made a world of difference and we don't know how we'll ever show our gratitude to all of you.
5.08.2008
A bit of Relief
The X-Ray was clear! We went in to the pediatrician's office yestruday and they checked over grace, said that there was blood in her stool. They ran an x-ray however and said that her intestines looked good, so the dreaded NEC has not returned! yea! The blood though, seems to be from an intolerance to dairy? So no more ice cream for Alysia. The Doctors orders where to just wait and watch and hope that if we eliminate all dairy products the blood will go away.
5.07.2008
Worries...
Well, we've been home for almost a full 48 hours and there are already some worries!! Although its been wonderful to have her home and she has been an ANGEL, we're probably going to have to take her to the hospital for a visit today. Yesterday she had a little bit of pink mucous in her diapers, and although it didn't look like blood...its been in 3 more of her diapers now and we're not sure what to do. She did have NEC, which was a really serious infection of her gut, and if she were to get it again we would definitely need to admit her back into the hospital, but the pink mucous in her diaper is the only sign we're seeing. She is still eating normally (normal for her anyway), and she doesn't have a fever or swollen belly or any of the other symptoms. So, we're of course concerned just because we don't know what it is, but hopefully there will be a perfectly normal reason behind it and she'll be able to stay at home with us.
She's doing so well and is so happy and content. It would be heartbreaking for all of us if she had to go back into the hospital and on antibiotics/off feeds.
Topher and his Dad gave her a blessing yesterday and it was really really neat. Topher blessed her with health and strength and that she would make it to a transplant. Hearing it from the mouth of my husband whose Priesthood I have absolute faith in, was definitely very comforting.
I have faith everything will fall into place as it should, and that she will get this transplant if it is God's will.
But it sure would be nice if she didn't keep us on our toes so much!!
Anyway, our appointment with the Pediatrician to check her out is today at 3:30. We'll post again after that with hopefully some reassuring news!
Love you all!
Thank you for your prayers and faith for little Grace.
Love Topher, Alysia and Grace
5.05.2008
Its True!
We are indeed home. So far it's been overwhelming and wonderful!! Yes, there's a lot of information, yes there are quite a few meds and procedures to learn, but yes she is wonderful and we love her even more!!
We got home around 3, after leaving the hospital and taking half the room with us!, (Topher pretty much got the Nurse to give us one of everything, i.e. Avagard sanitizer, a pack of diapers, binkies, stethoscopes, thermometers, EVERYTHING!! LOL) She was completely passed out when we left the hospital, so when she woke up an hour later, her world was completely changed!!
After we got home it was a whirlwind of phone calls from the Pharmacy, Home Health Care and Praxair, all trying to arrange to come by our house with formula, medications, pumps, saturation monitors and the works.
So, the low down is 5 medications that we have to give her 2x a day, an Oximeter to measure her saturations, and we do that 5x a day. A pump to do her continuous feeds through her NG tube each night, which has to be changed 4x throughout the night, and lots of syringes and formula to supplement and help us with the rest of her feedings throughout the day.
It seems like a lot to us now, but I'm hoping it will become more routine for us.
Anyway...I'm exhausted, and want to go get a couple hours of sleep before we half to do another feed.
Just wanted to let you guys know how grateful we are for all of our many blessings! Especially the blessing of finally having our angel at home with us. She definitely seems more content and happy than I've ever seen her. I'm so glad she's home!! Oh, and Topher is too...he can't ever stop staring at her!!
We love her so much and are so grateful for everyone's prayers in our behalf!! Please keep em' comin!!
Love Alysia, Topher and Grace
p.s. I'll post some pics tomorrow when its not midnight
Home?
They've been talking about today being the day for the last 5 days now...so I really hope it sticks this time.
She has to have an Echocardiogram and an EKG before they'll give us the ok or not. So hopefully both of those come back positively.
I am so nervous to think of having her home 24/7, but at the same time I am so ready for her full time as well! I know...very contradicting...but that's how I feel.
I just need to go to the hospital and place the NG tube, :( which I am not so excited for, but if I can do it, then on our end, she'll be clear to come home with us!
We'll also be finding out for sure if we can be taking her out places or if we need to be more confined to the house and such. We of course want lots of people to meet her and enjoy her as much as we do...but her health is so fragile, we can't risk getting her sick and ending up in the hospital again.
We feel so blessed that all has gone so well thus far. She has been able to meet every goal they've set for her, and remain relatively happy and content. She hasn't had any major problems or setbacks, at least not in comparison to other little babies, and she has been able to stay remarkably stable. We're so grateful for her determined spirit and feisty temperament. We know that they've helped her and us get through all this up to this point. We also know that so many of these blessing we've received have been thanks to the many prayers everyone is offering in our behalf. Thank you!
Thank you all for your continuing love, support and prayers in our behalf. Grace truly is a miracle to us and we're so grateful for every day she continues to bless us with her life. We hope everyone will get to enjoy and love her as much as we do, but don't be offended if we keep to ourselves for a little while, just to make sure all is well!
All our love
Alysia, Topher, & Grace
5.01.2008
As a quick note...so no one thinks that we hate our doctors :-) ...we don't...they are wonderful, for the most part very helpful. We were just a bit upset becuase, as our nurse practitioner said grace had become a bit of an "oversight" this last week. We finally got upset enough (don't worry, we refrained from yelling or cussing ;-) for them to call a care confrence, and figure things out...grace has a goal of coming home this sunday...before that time we simply heard something completely diffrent everytime we talked to a doctor, while Grace never changed. So in short we really do love Primary Childrens, and our doctors. Especially the Nurses, and Technicians that we see every day!