Just when I thought I was getting my mind wrapped around this intruder in our home, we get news that Brooklyn, our 3 month old baby girl, most likely has MPS too. Her urine came back with elevated levels of sugar consistant with MPS. Next steps? other than crying my eyes out? We wait. We wait for Jayden’s test to confirm MPS III and figure out which type out of four he has of Sanflippo. Then, we test Brooklyn to confirm she has the same. Why is this the will of God for my children? I can’t get my mind around this. Is good gonna come out of this? Yes. Is God still gonna be glorified? Sure. But REALLY…BOTH of my kids???
God can still preform a miracle. What would that look like here? Well, he could get rid of MPS in both my children. He could have the retest of Hunter’s come back positive and Brooklyn’s urine really was a false positive and she is fine. Can that happen? Of course. Will that happen? I don’t know but God does. The worst case? They both have Sanfilppo and we live with it. Key word LIVE. They are not gone yet. Jayden is still lighting up a room, running around asking for snacks, juice and “my dadda”. He is still progressing. Brooklyn just started to smile. How can we put them in a coffin now? We don’t do that with healthy people until we realize they are dead. I am not gonna grieve for my children when they are still here. I am gonna force myself to crawl out of this dark hole and fight to live in each blessed moment the Lord gives me with my children, darn it! This is the promise that God gives us, He alone has overcome the world and I want to start living like it.
Keep praying. I am crying out to God but most of the time I am relying on the Holy Spirit to do it for me. Will you pray for a miracle?
Thank you for your outpour of love a support!
Sorry I am so fired up right now! I am starting to realize how theraputic this blog thing is for me!
The Genetic Counselor called from Children’s around 6 pm to confirm that Jayden DOES NOT have Hurlers. Syndrome, one of the 11 potential Syndromes under the umbrella of MPS, which we now know he has for sure. We are relieved. Hurlers was one of the two they suspected and effected boys and girls. The thrid test results will come on Monday and we are hoping it will confirm Hunter’s Syndrome because it boasts some hopeful success stories and has treatment. It also is the only syndrome that effects only boys. the other 9, which are less likely for Jayden to have effects boys and girls so we are leaning towards, as is the Dr., Hunter’s. If it comes back positive, we will meet with a specialist as early as Tuesday and begin more testing to research the severity of the disease thus far and begin enzyme replacement therapy once a week at Children’s in Chicago. Treatments will not cure MPS but will drastically reduce the onset of the progression of the disease. I think it’s like a weekly cleaning of his system, injecting him with working enzymes. We will let you know more info as we learn about it.
Again you words and prayers continue to sustain us and even though more info is good, there are moments that we struggle. However, we spent the later part of our evening laughing as we watched our litle boy tease Aunt RiRi (or Ro Ro) as he said it, get chased and tickled by Bubba and Uncle Chad, and give nuckles to Uncle Dan, Uncle Bill and Aunt Jill. Ama was lucky as was Daddy and I to get some hugs in the mix. His smile lights up a room and adding laughter to it just brings our souls pure joy.
Here is a note from his Special Ed teacher…
“Jayden did a great job in speech today. We worked on asking for things (I want…). He identified blue and tried very hard to say it! He also counted to 2. He has “please” down and we just can’t resist his smile when he says it! Have a great day!”
the bus driver and assistant this afternoon were laughing when I got Jay off the bus. I guess the entire trip home hie was singing about his dada! They said he should go on american idol!
Thanks for your listening ears, your prayers, you are the ones helping us carry this burden as we try to stay focused on the light and optimistic about the future.
Here are some 2007 pics of Jayden we were talking about tonight that we just loved!
Jayden coaching his one on one basketball team…
Great America with Aunt Row Row!
It’s raining outside. I am listening to music, candles are lit and my house is warm and smells like fall. It makes me smile. Brooklyn is smiling in her swing. Jayden is at school. Jut is at work. These are the moments we are clinging to. This brief since of calm. Of God carrying us.
We contacted the genetic counselor from children’s lat night via e-mail to see if we could get Jayden’s test results prior to next wed as the days of hoping the best and thinking the worst were blending together. She called this morning and told us there are a series of three tests they were doing and the first test was testing his urine to confirm he has MPS. That came back positive. Basically we know he now has MPS we just don’t know what form of it he has. On Friday we will get confirmation on Hurlers Syndrome. Out of the two they think, this is the one we don’t want. If it comes back positive, there is a 50% chance Brooklyn will have it, and, although there is treatment, this is the worse of the two evils. If it comes back negative, we will find out Monday or Tuesday if it is Hunter’s Syndrome. Out of all the syndrome’s this is the better one with more success stories. It also consists of weekly trips to Chicago for treatment. There is a chance that it could also come back negative. If that is the case, more testing will done to see which syndrome he has. The Dr.’s suspect Hunter’s based on his presenting symptoms and the absence of cornial clouding (cloudy eyes). We are hoping now for Hunter’s as the others are worse and we are hoping for early and quick treatments and a mild case of it. That is the best scenerio. Pray with us for that specifically. So what’s next? More testing in all areas of Jayden’s life to see where he is on the progression of the disease and treatments with a specialist at Children’s in the city. There are no guarentees of a long future but the ERT treatments have proven very successful in delaying the diseases symptoms.
We are hanging in there. Jut was hoping for a mistake, that he didn’t have MPS. I think I knew he had it but how I am scared to hear further. We are still leaning on your words and prayers. We are still taking turns crying although my tears have dried up. We are clinging with our nails dug into the truth of God’s promises. His Words are sometimes the only thoughts we can come up with. We are thankful the answers are coming. We are thankful for every moment with our children, each other, and our family and friends. I was telling a friend, it feels like I was living in black and white and now I am living in color. I am sad this is what it took to make me see what it means to trust Christ. Please trust Him with us. Thanks…we love you!