Lauren Update

Yes I know, it’s been awhile. She is doing pretty well. Sitting up, grabbing at things, playing with blocks, putting the blocks in and out of her toy cookie jar, etc… We now have PT and OT coming to the house to work with her every week. We still go to speech on Wednesday mornings to work with her on eating etc… That is the set stuff for the week.Lauren went this past week to visit the lung doctor and has now been put on a breathing treatment twice a day. I guess she has developed some airway disease that 95% of kids with trachs have. Always fun. The medicines costs us about $600 a month for that but lucky us we have insurance and she has secondary medicaid so we have yet to pay a dime. Kinda nice because that price is after our prescription plan and we could not afford it on her own. Lauren also is on a very specific formula that is kept behind the counter at the pharmacy. It runs $750 a month (1 can lasts about 2 days at $50 a can) insurance does not pay for it but medicaid does and we have it shipped to our house, when the “g”tube comes out we will have to foot the bill for that but hopefully it will come out at the same time she is fully on solid food by mouth in which case no formula. I thank God for insurance even though ours is quite outrageous and we pay it out of pocket but it’s still less then all her medical bills, monthly bills, OT, PT, Speech, medicines, medical supplies and formula, and whatever else babies need. (Note to others the UPS guy knows us by name since we get multiple deliveries of supplies every week).

Well lets see… Lauren went for her the cleft palate board appointment this last week. It took about 5 hours to meet every specialist and every doctor but we made it through. I guess you could say we where a bit disappointed (not the doctor’s fault), this meeting has been on the books for 7 months and we had been hoping for some closure to the entire thing and it did not happen. For the plastics guy (who we meet with) to do his part of the surgery he is literally going to walk into the OR when the other doctor is finishing up removing the rest of the tumor on Lauren’s palate and decided if he will proceed right then or wait two years or so. He wants to do what’s best for her and waiting may be just that, see there is no way to tell how much palate he will have to work with until the ENT removes that part of the tumor. We meet with the ENT next week. Either way they will be aggressive about getting the trach out once the ENT is does her surgery, that will be a good thing. We have not really heard our daughters voice but for maybe 10 minutes since she was 2 months old except by the use of her passy-muir speaking valve.

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What else… she weights a bit over 17lbs and is close to 27 inches in length now, her head scar (she has many others) is looking much better and her hair will cover most of it up once it grows in. We pray to God for some normal life in the near future which may still be two years off but we are trying to pretend thats close. We are still patching her eye, now switched to every other day, different eye and for only 2 hours instead of all day. Lauren will also be getting glasses in the next week or so to try and improve her childhood eye turn before they do eye muscle surgery (forgot to mention she will be getting that surgery too). Maybe she should get glasses from Bush since he is looking for a new pair but I bet they don’t fit her.


~ by Dan Browne on October 30, 2008.

One Response to “Lauren Update”

  1. that is some singing

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