Happy New Year!

Once again it's been a few weeks since you heard from me/us. What a crazy few weeks..... Lauren was seen by a new GI doctor to help us figure out what is going on with her reflux. So she was started on yet another medication, erythomycin, yes it is an antibiotic but given in small doses it mimics the digestion hormone motilin to help her stomach empty quicker. So right now she is on reglan, erythomycin and previcid 4 times a day and her muscle relaxer for the CP three times a day. We also just learned that our insurance will no longer cover her previcid so we shall have to talk with the doctor about other alternatives since it would cost us $350 per month without the insurance. So back to the GI doctor, he then sent us to Miller Children's hospital in Long Beach for an OT consultation for a swallow study, reflux evaluation. When we met with the OT it was basically rehashing her history with yet another and she then watched Lauren eat and determined that she would not be a good candidate for the swallow study for the following reasons: she would not be able to sit by herself (because she can't), she wouldn't eat barium, and it wouldn't really show anything since we are almost 100% sure she is not aspirating her food/liquids. So back to the start, we meet again with the GI doctor on the 22nd and will probably be taking her for an upper GI endoscopy. We are NOT thrilled with this as she will need to be sedated but we really need to find out if anything organic is causing her such severe reflux, ie hiatal hernia, damage to her esphogus or something else. She is maxed out on her medication and is still spitting up and uncomfortable, and some days she doesn't want to take her bottle at all. We give both girls pediasure 3 times a day for calories since neither one can take in enough solids to keep their weights up. They both are about 10 lbs underweight for their length. Pediasure is great stuff but it is $10 for 6 bottles, that equates to $70 a week in pediasure OUCH!! I do try to use 1/2 pediasure 1/2 whole milk just to cut the cost.

Finally, on Friday Lauren will recieve her new gait trainer and bath chair, it has taken us about 6-7 months to figure this mess out. After ordering it once with a different mobility company under our old insurance and the paperwork not being done in a timely fashion we lost out on a lot of equipment (our old insurance didn't have a cap on yearly coverage for equipment, so we had ordered both girls feeding chairs, a gait trainer, a bath chair with wheels so we could use our shower to save our backs) but our new insurance only allows us $2500 a year. So we just made the cut-off for 2008 to get only a gait trainer and bath chair for Lauren. 2009 will bring us to ordering her wheelchair, which insurance will only cover maybe 1/2 the cost a chair. It makes us sick to think that a wheelchair costs 5,000-6,000. We get to see demo chairs on the 20th to pick one that will work best for her. That will be a very hard day for us, NO ONE should have to order a wheelchair for their child!!! I think it's getting harder, reality is setting in......she has always just been a baby so she didn't need anything special, but now with the wheelchair it means ramps for the house, convert our van for a wheelchair. Hopefully we can wait a year or so on the ramp and conversion since she is still pretty light.

Taylor is doing well, she started taking a Tap dance class on Wedn and Friday afternoons with a friend from preschool, I was so excited that I could actually take her and it fits perfectly with our crazy schedule. So with school, therapies and doctors appts there is no free time, but after the Holidays when I had lots of free time, I was happy to get back to my crazy routine and so were the girls!

Happy New Year!