Josh & his tests, another update

[Pauline]

Thankyou all for your kind thoughts and prayers.
The news update is almost too sad for me to type, but I can't sleep and I feel so alone.

The muscle enzyme they found in his blood is creatine kinase.
A normal count is up to 130, at or beyond this indicates many possible muscle problems. The one most fitting is muscular dystrophy, although here are over 20 types of muscular dystrophy... the internet is such a marvel, information at your fingertips... many of these may cause milder problems and not so limiting on life expectancy. Hope lived on.

The one I was concerned about, namely Duchenne muscular dystrophy, is the most severe, for boys they regress & by age 8-11 are wheelchair bound.
It affects the muscles used to breathe, and the heart.
Few live to see their 20th birthday.

The main initial diagnosis of Duchenne is by creatine kinase count, as it goes excessively high, unlike other types of muscular dystrophy,where it may be slightly raised.

I requested the count today. The paed did not want to tell me, but I needed to know. I told him I realised if it was 130+ there was a problem . He had already agreed that it is a form of muscular dystrophy they are now investigating.
Joshua's count is 23,000. Twenty three thousand.


our kids are all so precious, making the most of every day is so important.
I want to stop time, keep him at 5 years old.

We go for a repeat blood test tomorrow.

Please pray for me, my family, (I have a 9 year old son and 2 daughters, twins, who will be 8 in april) and Josh.

God sent me an angel, but it seems he was only on short term loan.

I am sorry to make you all sad, perhaps if we all pray there will be a miracle.

But then again Josh is a miracle, and i thank God for each moment of his life. He has brought so much joy to so many people, I don't know how I am going to cope with this.

Love to you, and all your little ones.

Pauline

[Kathleen M]

Pauline:

I just don't know what to say that could help you right now. I will pray for the miracle you asked for and keep you and your family in my daily prayers.

I just want you to know we are here for you and hope that you will be granted answers to your prayers
Kath

[njbirk]

Pauline,

I don't even know what the right words are to say to you right now. I just know that my own heart was breaking as I read your words.

As Louise said, miracles happen all the time, and I pray that you will have one.

Nancy

[Pauline]

Thankyou for your kind words and wishes.

I feel like I am kind of sharing the burden here with you all, so even if you don't think you know what to say, you already ARE saying the right things.
Thanks for the support, it's 2.20 am here in the uk, I will probably be up all night whilst everyone else snores peacefully!
What a difference a week can make, we are so fragile.

Love to you all.
Pauline

[m&mmom]

Pauline,
I cannot express how sorry I am to hear about this news. You and your family will be in my thoughts and prayers.

Cindy

[Angie-D]

Pauline,
I don't know what to say but you and your family will be in my heart and prayers.
Angie

[admin]

Pauline:
Reading your update brought tears to my eyes. I am so sorry that you have to deal with something so hard! Just remember that things happen for a reason and God gave Josh to you for one of those reasons. I am lost for words, but hope that you keep strength to continue on and do what's best for Josh. I will keep him and your family in my prayers! Best wishes are being sent to you!!!
~Krista~

[admin]

I am so sorry and we too are praying for you.

[Francine_Litz]

Dear Pauline,

I am so saddened by your news. I wish I understood God's methods and reasons for the things that happen especially to children. I don't know how one holds onto faith with news like this, but I hope that you do. I will pray that if there is a miracle possible - even if there is only one miracle a year God gives out - that your Josh gets it. Maia and I will be praying for Josh and for you and your family.

God Bless Josh,
-francine