Josiah has come out of the OR 'a-ok'. He'll probably have his breathing tube in over night, but he's steady.
Briefly, this is what we know: Josiah has been diagnosed with something that is call Pallister-Hall Syndrome. There isn't much research available on PHS because it is a very rare condition. The condition ranges from mild to severe, but a very small percentage of cases are severe. It is impossible to know at this time where Josiah fits on this range, but there are indications that he lands more on the mild side. In this situation, this genetic incident would be described as an 'irradic mutation'; basically something that 'just happened' on the gene level and wasn't something he necessarily got from his parents.
Some of Josiah's current breathing struggles are related to PHS. There are some minor abnomalities that could end up not being a big deal at all, but we'll only know through time how he is affected. Other key indications of PHS that Josiah has are his horseshoe kidneys and his 6 toes (and the webbing between some of them). There are some other more concerning key indications of PHS which Josiah does not have which is a big blessing from God.
We have been given some of the best information and links available on PHS, which we will be processing and gleaning from over the next few weeks.
At this time there are obviously a lot of questions and a lot of "What if's?" that we all want answered, but the most important thing is that God is in control and that Josiah is doing well. Josiah will be kept here at Children's Hospital for at least another week just to observe his breathing and to allow some specialists to examine him. As we have known all along, Josiah's challenges can only be determined as he develops and grows older. We could be facing many years of check ups, hospital visits, and roadtrips but God is good.
We just want to thank God so much for giving us a beautiful and wonderful boy who is bringing us so much joy. God is loving and has brought Josiah into this world for a reason, sustaining him and developing him so much this week. Thanks again for everyone's prayers and visits and concerns and comments. We love you all and are so excited to have you walking with us and Josiah at this time.
PS Josiah is a week old already! WOW!
Loving God's Grace & Peace.
- Andrew, Marie, & Josiah
3 comments:
Glad to hear you finally got some answers and your right God is good, as parents of 2 special needs girls we found that this poem was comforting.
Ode to Special Moms
(by Erma Bombeck)
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia.
"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
Hey Andrew and Marie,
I hope you guys check this because Andrew will you give Marie a great big huge hug from me!!!!!!!! We sure do love all three of you and Jeral and I know you will be great parents to little Josiah. We are glad that you were able to get some answers finally, and know that we will be praying, and look forward to many years of being "uncle and aunty" to Josiah, and all the other future little Haaks to come!
Love all three of ya!
Leanne and Jeral
At least you are getting some answers. I know that when we are at NIH it is amazing the people that go in and out of there. Josiah would fit perfectly as an asset to all the things going on there. Andrew i sent you information about it ...
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