January 11 - Update on Andrew

Dear Friends & Family,

So many of you have been so dear to call and ask and pray for our sweet Andrew, and I wanted to give you all an update on him. It has been a very “eventful” (not sure how else to describe it!) month. I have heard stories of all sorts of wrong information - the grapevine has been active! – so here is the true scoop…

Sweet Andrew was born December 9, 2004 weighing in at 7#7oz. The week after he was discharged, he got very jaundiced and had to be put back in the hospital for IV therapy and the photo-light therapy. He got to come home 3 days later. The day he was admitted, the doctor told us that he suspected Andrew has Downs Syndrome. We have met with a genetic specialist who also believed he is Downs. This diagnosis has since been confirmed by blood work.

So, here is the Frequently Asked Questions that we get!
I don’t think he “looks” Downs – does he have a mild case?
Having Downs is like being pregnant – you either are OR you aren’t. (just like you can’t be a “little” pregnant – you can’t be a “little” Downs J) Andrew is Downs – he has an extra #21 chromosone in each of his cells. The genetic doctor tested him for Mosaic Downs – a very rare form of Downs where the extra chromosome is not always present, but he does NOT have this. He has just classic Downs Syndrome. We will not know the full details of what he will be able / not able to do until he gets older. Our challenge is to help him reach whatever his full potential is.
I heard he is deaf – is this true?
NO! Downs kids have very small ear anatomy – and Andrew’s are TINY! Blake tried to shove his finger in Andrew’s ear yesterday and could not get far at all! We went for his hearing screen today, but he was too congested to get a good reading. Andrew did fail the hearing screen done at birth (but only in his left ear). The audiologist told me today that she did get a few good readings out of his left ear, and she was not too concerned about permanent hearing loss. We will re-check in 6 weeks. We need to take him to a pediatric ENT for an evaluation to make sure he does not have fluid in his ears (which also could be the reason for poor test results). So, this is a big praise! His prognosis for hearing is very, very good.
Don’t Downs kids have all sorts of health problems?
Typically, the answer to this is yes, but we have been very blessed so far. Andrew has passed his heart test and his thyroid screenings. The “big 3” that doctors are concerned about are: heart, thyroid, and intestines. We have cleared the heart and thyroid hurdle, and he is eating, pooping and peeing, so there are no concerns about his intestines at this time. Praise God! We will continue to monitor his hearing and vision.
So, now what?!?
This was our question as well. Now, we love on Andrew and adjust to the new normal that is the Voth family! Andrew is a little floppy in the neck area, but doctors say his muscle tone is really pretty good for a Downs baby. We are in the process of enrolling in Early Intervention which will help get Andrew any speech therapy, physical therapy, etc that he needs. We are working on his eating which is also going amazingly well. He is gaining weight and turning into a little butterball baby. Our days are probably more normal than you would expect! We are weaving our way through social programs, having 4 kids, doctor visits, carpool, marriage, etc.
So, how are you and Jeff doing (I mean, really doing???)
I love this question – because the answer always changes. I want to answer – depends on when you ask me!!! Actually, we are doing well. We do not lay in the fetal position locked in the closet (well, not very often J) Like I said before, we are adjusting to our new normal. God’s grace and peace have been amazing. I had a dear friend send me a journal with instructions to write down five blessings a day. I call it Andrew’s blessing journal, and God has been faithful to give us at least five a day. I wish I could share every story with you all! It is proving to be an amazing journey of grace and love and God’s faithfulness. We are loving on and enjoying our new baby and trying not to kill Blake and Brantley who are wild toddlers. Our church family has been amazing at feeding us and checking on us! Andrew is sleeping well at night – Jeff does the midnight feeding and I do the 4 AM, so we are getting more sleep than you might suspect. Jeffrey is an amazing big brother loving on all his little ones! It is chaos around here, but in a somewhat controlled, fun, crazy kind of way!
How can we help / pray for you?
The immediate prayer need is that Andrew gets better from a cold. He has been tested for RSV, and we are waiting for the results. He is very congested, but is still eating and sleeping well. Pray that his ears do not become clogged with fluid and that his ENT evaluation goes well. Pray that Jeff and I continue to get rest and care for ourselves so that we can care for all these boys! - that we have divine wisdom is dealing with each of them individually.
We have been so blessed by all the meals people have provided. I know that there were days that we literally would not have eaten if people were not ministering to us through meals. Thank you, thank you! We have meals coming through Friday the 14th.

I hope this email helps. We forget who we have told what to, and really do want to keep you all up to date. If you want to keep getting updates, please send me an email and I’ll keep you / add you to our list. Please email this to anyone you think I forgot!

We love you all and thank you for your prayers & love…
Molly
& the boys