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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, November 30, 2007

Gearing up

Jeff and I are gearing up for the holidays and also for Alex's appointment. He goes to a limited echo and cardiology visit on Monday. We hope for more conclusive answers and hope hope hope we know what is going on. I think it would be a little crazy for us to go and STILL not know when things are happening. I did go up to PCMC and fill Alex's meds this week. We bumped into one of the Dr.s and he said they have talked a bunch about Alex. I also got a phone call from his cardiologist who apologized that we have been riding the roller coaster so long and hopes he can see what to do next. He didn't feel as though the angioplasty did much and he also feels like waiting and waiting isn't one of our best options either. We certainly can tell a difference in our little man. Before, we could take off his O2 to change his cheek Tendergrips or to get him the tub without worrying about him turning blue or struggling.... Now he turns blue so fast and he starts tugging or tracting. He is sleepy and cranky a lot more in the day but sleeps about the same. He just gets tired of playing and will chill out on my lap. I have tried some new measures in clearing up his bum and it looks better (thanks Glenda). The hardest time is night time and by the time I wake up and change him there are new bleeding sores. I am working on it. All in all we are doing pretty good and just hanging out.

6 comments:

Lance and Raegan said...

You are an amazing mom. I just wanted to tell you how impressed I am by you. You have the best attitude ever!! You are so happy and I want to be like you. How do you stay so upbeat??? Just to let you know I think about your little guy and we pray for him. If you need anything or if Ryleigh wants to come play just call me!

Ashton's Family said...

I just wanted to say that we’re thinking of you and hope you get some news about how to move forward with Alex Tomorrow.

The Hardman Family

Angie said...

Good luck today! I am thinking of you guys!

Summer said...

Hi! You guys don't know me, but I know Megan and Hutch Hansen and I was just reading some of the other "PICU Buddies" stories. I just wanted to leave a diaper rash tip for you because I know there is nothing worse. Our little guy was getting them pretty bad and nothing was working so I tried Lotrimin cream for athlete's foot. I don't know what it is, but that stuff worked like a charm and soothed his little bum almost instantly. Bag balm also works really well especially to keep the moisture away. There's also another product called Calmoseptine that you can get at the pharmacy. It is not prescription. It is pink past that really coats their little bum to prevent the liquid from getting on it. I hope that your little guy keeps fighting and that his doctors are able to figure out what they need to do for him. Take care and stay strong!
Summer Gibbs

Heather D. White said...

HI! I found your blog through our friends the Dumas' blog and recognized the name "Jeff Homer" immediately. This is probably a long shot, but I SWEAR he looks so familiar to me. Does he happen to be Ryan Homer's brother and is his dad Dave? If so, the world is definitely small. It has been probably 9 or 10 years since I've seen the Homer fam...however, in case it ISN'T the same Jeff Homer, I won't write any more. LOL! But just had to drop you a line...just in case! :-)

Heather D. White said...

Hmm..for some reason, it won't let me post a link to my blog so that you can respond...so here it is:

http://heatherdwhite.typepad.com