I was hoping for answers when we saw the genetics expert but it was more of the same, Amber just has her own syndrome and we will have to keep an eye on her growth and development for signs of what she has and how to intervine if necessary. In the meantime, she tells jokes or just laughs to herself. She wants to finally start to crawl but not going anywhere just thinks about it. We work a lot at home from all her therapy sessions on fine motors, gross motor and feeding skills.
March 1 – Dr. Weinert, we are concern with her left foot, left toe curled…need surgery? Needs special shoes? Too soon to tell or make decision, need to wait for her to walk.
March 2 – Dr. Zadeh, took measurements of Amber still no diagnosis will input data and see if any matches. Possible syndromes: Jacobson or Costello however, micro array and other factors make it not likely to be.
March 8 – Dr. Song, left eye implant surgery outpatient procedure at CHLA.
March 12 – Dr. Swensson. Looking good next visit in June will be doing an echo cardiogram… 18 lbs 8 oz.
March 20 – Dr. Song, follow up to surgery of left eye everything went well.
March 22 – Dr. Crockett, ear infection not cleared will make appointment for ear tubes.
March 23 – Elizabeth, Dietician concern with weight and feeding of Amber, she has been 18 lbs for the last few months might need to use feeding tube for midnight feedings to increase calories.
March 24 – Dr. Elbalalesy, neurology follow up, keep an eye on head circumference measurement will see her in one year. No real worry right now, keep going to therapy and early intervention programs.
Oral Therapy – Amanda continues to work with Amber, all food by mouth only, stage 2 working on different texture like crackers.
Physical Therapy – on hold again, Cathy unable to work with us due to daycare issues. We do once a month follow up with Julie through our insurance.
Early Intervention Program in Laguna Beach – Every Wednesday, working on motor skills, sensory skills, feeding, and auditory processing.
Friday, March 19, 2010
Tuesday, February 23, 2010
February 2010
It's been really fun putting contact lense on Amber's left eye in gradual increments 2 hours one day, 4 hours the next, and so on. However, they pop out before the time is done or they've gotten lost.
February 1 – Dr. Crockett, Amber tugging at her ear, has ear infection. On Feb. 15th, infection not gone.
February 17 – Dr. Uribe, we continue with another contact lenses for left eye this would be number 5 we’ve lost.
February 20 – Dr. Song, has recommended left eye lenses implant surgery for March.
February 22 – Dr. Grant, all going well, recommended to remove feeding tube at home.
February 26 – Dr. Comulada, made changes to antibiotic for ear infection
Oral Therapy – Amanda Wolfgang continues to work with Amber and her feeding. We are fully on Stage 2 foods, about 3 to 4 oz in bottle, doesn’t like zippy cup, continue to eat puffs and trying to feed stage 3. All food in by mouth only no more g-tube feedings.
Physical Therapy – Cathy from Regional Center started working with Amber with fine and gross motor skills.
Early Intervention Program in Laguna Beach – Every Wednesday, working on motor skills, sensory skills, feeding, and auditory processing.
February 1 – Dr. Crockett, Amber tugging at her ear, has ear infection. On Feb. 15th, infection not gone.
February 17 – Dr. Uribe, we continue with another contact lenses for left eye this would be number 5 we’ve lost.
February 20 – Dr. Song, has recommended left eye lenses implant surgery for March.
February 22 – Dr. Grant, all going well, recommended to remove feeding tube at home.
February 26 – Dr. Comulada, made changes to antibiotic for ear infection
Oral Therapy – Amanda Wolfgang continues to work with Amber and her feeding. We are fully on Stage 2 foods, about 3 to 4 oz in bottle, doesn’t like zippy cup, continue to eat puffs and trying to feed stage 3. All food in by mouth only no more g-tube feedings.
Physical Therapy – Cathy from Regional Center started working with Amber with fine and gross motor skills.
Early Intervention Program in Laguna Beach – Every Wednesday, working on motor skills, sensory skills, feeding, and auditory processing.
Friday, January 22, 2010
January 2010
We work at it everyday... she loves being outside and mixing with people. She will be a very social child. I guess all the days in the hospital isolated made her want to be around people. Still feeding with bottle no more feeding tube.January 8 – Dr. Swensson – Amber doing well no more lasix, watch her weight.
January 20 – Dr. Uribe – Amber has lost 4 contact lense but both Dr. Uribe and Dr. Song want to wait and see if she can keep it. Don’t want to do surgery on left eye yet.
January 28 – Dr. Comulada – First year check up, still behind with vaccines.
Physical Therapy – Still going to insurance therapist Monday and Wednesday working on movement, massage and rolling over.
Occupational Therapy – Regional center waiting for new therapist current therapist no longer with RC.
Oral Therapy – insurance therapist Tuesdays and Thursdays working on bottle feeds doing four bottle feeds and two tube feeds a day, also doing stage 2 baby foods and finger puffs. Trying to use zippy cup without success.
Early Intervention Program in Laguna Beach – Every Wednesday, working on motor skills, sensory skills, feeding, and auditory processing.
January 20 – Dr. Uribe – Amber has lost 4 contact lense but both Dr. Uribe and Dr. Song want to wait and see if she can keep it. Don’t want to do surgery on left eye yet.
January 28 – Dr. Comulada – First year check up, still behind with vaccines.
Physical Therapy – Still going to insurance therapist Monday and Wednesday working on movement, massage and rolling over.
Occupational Therapy – Regional center waiting for new therapist current therapist no longer with RC.
Oral Therapy – insurance therapist Tuesdays and Thursdays working on bottle feeds doing four bottle feeds and two tube feeds a day, also doing stage 2 baby foods and finger puffs. Trying to use zippy cup without success.
Early Intervention Program in Laguna Beach – Every Wednesday, working on motor skills, sensory skills, feeding, and auditory processing.
Wednesday, December 30, 2009
December 2009
Amber is still enjoying home life :-). We are now in full effect with the contact lenses on the left eye...she hates it. We have an appoinment with Dr. Uribe about once a month to see how it's all going. We do not keep the contact lenses on that long because they keep popping out. She also might have an ear infection with would be her first one since being home.
We are looking into a special program for Amber called Early Intervention Program (EIP) in Laguna Beach. This would be a group class that targets all skills; feeding, fine motor, gross motor and social interaction.
It was very exciting to have her home for her first Christmas. The girls truly enjoy having baby sister home.
She continues to see a OT for physical therapy at home and Amanda at Mission CHOC for her feeding needs. She is starting to eat more of the Stage 1 foods but continues to drink the same amount of milk (formula).
Monday, November 30, 2009
November 2009
This month we are so thankful to still be home... no hospitals and thriving.
HAPPY THANKSGIVING !!!!
HAPPY THANKSGIVING !!!!
Medically:
Neurology wants to continue to keep an eye on her everything looks ok now will follow up in 6 months. Cardiology wants to keep her on the low dose of Lasix and gave her a 2 month pass our next appointment will be in January. Ophthalmology wants to wait on left eye surgery, we will put a contact lense in the meantime until she is older or Dr feels it's time for surgery. GI says she's doing well. I pulled her MicKey button on her carseat but the site looks good (Thanks Jenell for checking it at home). Oral therapy is also going well we are on stage 1 foods, drinking 2 to 3 oz on and off and will be trying puffs soon. Physical therapy also going well she is rolling over more and more.
Socially:
Amber loves being outside and around people. She is always happy and smiling at people and kids. At home, she can't get enough of Taylor tumbling around, Kyana dancing and Daddy bouncing her up and down. We love taking her out and feel good to be more mobile with her. We are truly a family of five now.
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