Kimberly no longer has an apnea monitor, finally!  At her last well baby check they said no more. She got all of her shots and the flu shot, she only cried for about 10 seconds or so. Now I have to get all the kids the flu shot. Kimberly right now has a cough and a sneeze and runny nose, she is extremely grumpy. To say the least. I just got her to sleep, hopefully she will feel better when she wakes up. We are going camping at the end of the month, and then my husband is taking our 12 year old daughter, Cheyenne, deer hunting in Colorado. If she has good grades. So she is trying. I have tons to do before all the kids get home, so till I have more time....:)

So we went back to Stanford Childrens hospital on the 10th of Aug.  Kimberly had a MRI, and they had to use antestesia to sedate her in order to do a contrast dye via IV.  So then we got to stay overnight for observation, due to her apnea issues, which she has not had an episode for about 3 weeks! WOO WOO... we go back in November to the vascular anomolie clinic again, the radiologist and drs are still not sure what it is on her nose. But the great news is the epidermal nevus is only skin deep, it does not continue through her soft tissues. Or bone.  :)  She is almost 6 months old, and she rolled over yesterday for the first time. She is doing so great! I will post more pics soon.

So we went back, to the Vascular Anomoley Clinic.  I talked to one dr, then another dr, then 8 drs came in, it was crowded! Lol.  Then the pediatric Ear nose and throat specialist left and went and got another dr to come in, all the drs examined her nose, a few examined her nevus, and one looked over all of her skin, they talked to me about her nose and I told them how when she cries it gets darker almost black, so after they were turning her head and pushing on her nose she began to cry, and sure enough it darkened. then one dr said it actually enlarges the tip of her nose when she cries. so they all looked again.  Then the went out and two came back to talk to me about treatment.  They want me to bring her back for an MRI, but to do an MRI in an infant they said they do it under general antestesia, so I am of course worried about that.  They said an MRI is the best way for them to diagnose what type of hemanginoma it is.  OR it could be a specific kind of cyst that occurs in infants while in the womb.  They are concerned about her stopping breathing and that there is still no reason why.  It is begining to upset me because her pediatrician never downloads the info from her monitor, and it has a memory on it, and it is 59 percent full, I want to know why she stops breathing and why they are not trying to figure out why.  So next time it happens I am going to ask to  be refered to a respitrory specialist.  Doing nothing is not something I feel comfortable with.  Kimbers appointment was at 2 yesterday, so I left about 10:15.  and got back home at 7:50. It made for a long day.  Traffic is so bad in the bay area! It took me over an hour to go 15 miles.  I am going to look into taking the BART. I saw a station a few blocks from the hospital, and that would save me that area of traffic and bridge tolls.  I would have to drive about 50 miles then take a train the rest. And that is the worst part, the area where the train would take me.  Now I just have to wait for them to scheduel the anthestesia study.  (SP) 

Kimberly has an epidermal nevus on her left cheek, it is a brith defect, it can have serious complications involving eye malflormations, skeletal malformations, seizures, retardation, (its easiest to google it) So far I have had her eyes tested twice by a renologist (sp) and he said her eyes seem fine.  We have had the normal preemie head ultrasound done and it was fine. 

So we went to the Childrens clinic at Stanford, they said all we can do at this point is keep an eye on the epidermal nevus on her cheek, if it begins to change then I have to bring her back.  Not really great news because there is so much not known about this condition, and this specialist had never encountered this condition before. :(  Kimberly also has a few small visible blood vestles on her nose, to begin with it appeared bruised, but it has not gone away.  So I had them look at that, and I was kind of surprised with what they said, the dr wants us to come back to a vascular clinic that they hold once a month because her condion can cause her nose to not grow properly, either by not growing at all or by rapid growth, so we are meeting with a team of drs next month so they can decide the best treatment, and as soon as possible to stop it from getting worse. 

Kimberly is still wearing a monitor, but mostly at night, unless it goes off during the night then I keep it on her for the next 48 hours.  She has only stopped breathing once, and that was very frightning!  Since we had the maching settings lowered for her pulse rate it has not went off for low pulse, now it is set to go off at 60 beats per minute. 

My other kiddos are such great helps, they are still wanting to help, I know soon that will change but for now I love it.  I was worried because Kimberly wasnt interacting at all, no smiles or cooing, but that all changed this past week, she has been making the cooing sounds and even a small giggle.  And finally she looked at the rattle toy I bought her. I just keep trying to get her to look at it, at me at anything, and she is!