Doctors, PHDS, DOCS and DOCTORS!

I feel like I need to update everyone on the latest news. We have been busy, very BUSY, I feel like I say that in every post, it is just our life right now, alway something to do and somewhere to go. Since Noelle has been discharged (almost 2 weeks ago) we have seen several doctors. We have been to CHLA (Childrens Hospital LA) to see an ophthalmologist, and then around Orange county we have seen her pediatrician, nutrition, ophthalmologist, nephrologist, cardiology,  gastroenterologist, general surgeon, Occupational therapist, Regional Center, and neurology and a few in home care specialists.

Right now, we are hoping to get our insurance to approve surgery for Noelle at CHLA for the first part of August. They will be checking the pressures in her eyes and possible "venting" she currently has glaucoma and coloboma, with possible cataracts. We hope that the doctors can continue to work together to allow Noelle the best vision she can have. 

Nutrition is following Noelle's weight gain, we are currently fortifying (adding formula to breast milk) to give her additional calories to aid in more weight gain. Typically infants get 20 calories per ounce of breast milk or formula and Noelle is receiving 24 calories per ounce. 

Her kidneys are currently still small and appear to be functioning at 40%. We trying to find a person who can get a blood draw on her to give us an updated count on things. On Monday we spent an hour and a half at the hospital and 4 nurses trying to find a vein they could draw from. after 3 unsuccessful pokes I called it quits and we left. Hopefully we can find someone by tomorrow who can get her blood drawn.

Cardiology is following us as Noelle has an ASD and PDA, both which are categorized as small but will follow to watch and make sure that the holes close. If they don't close they will have to do surgery to close the holes.

GI is working with us to follow her progress with her feeds (bottle and g-tube). She is still taking 10-15 mls by bottle and 18-23 by pump, and hope that over time we can get her eating more by bottle.

The General surgeon says that everything is healing well with her g-tube! We are looking at operating on her hernias when she is about 6 months old. There is no rush to operate unless she develops a hard bump on her abdominal area, which he doesn't foresee happening. 

Occupational therapy is working with us on keep Noelle as mobile as possible. she does have a stiff neck on one side, she always turns her head to the right and doesn't like to turn to the left. At this time she does not have torticollis yet, so we are stretching her and working with her everyday to keep her from developing torticollis and to try to get her to use the other side more. 

Regional Center has come to meet us once, they have to review our case before we can get any services. We are praying that Noelle will be able to get therapy through them. They send therapists to the house to work with her on physical, speech and occupational development. This means I wouldn't have to drag the kids all out to these appointments (this would be fabulous and help me so much)! Dragging 3 kids to appointments is a day long task!

With this syndrome comes many seizures. Seizures of all types. We have learned through the neurologist of things we need to look for and what steps to take if she does have a seizure. over 90% of WHS kids have seizures at some point in their life. We are hopeful that she maybe one of the few that don't but will find out with time if she will face this additional struggle. 

I feel like this is the longest and most boring informational post we have made. Hope it wasn't too long and boring for you all =) Now that I have this all done I can start posting more regularly again and not feel so behind! My goal for the week... Post more to the blog. Stay tuned!