Hello Again

Hi everyone, It's been a long time since I've updated you on our Amber. She is now 2 years old and 9 months...almost 3. She is doing great and still the happiest kid ever. I resently sent a letter to the clinic that told us about Amber's heart issues when I was 20 weeks along. The letter included the picture I am posting, letting them know what I would have missed if I had followed their advice to terminate. We are currently watching Amber's vision now that we know she has Glaucoma in both eyes. I didn't know what that meant until last week...I need to ask more questions tomorrow and then I will share. Amber will have another check up under anesthisia at Childrens Hospital in Los Angeles. I think this one makes number 11 in overall procedures and surgeries and it's 8 in eyes only. She is currently going to group therapy with me on Mondays and preschool by herself on Fridays which is nice. She has OT, PT, Speech and vision therapy once a week each. She is singing in the church choir with her big sister Taylor. She loves her big sisters. Please pray that her pressure in both eyes have settled and no more shunts are needed...she has one in each eye now, they want to implant a second one on her left eye.
Until next time take care.

June 2010

Amber is babbling more, she sings, smiles, shows connections from one thing to another. We are still working on her fine motor skills and gross motor skills. Her tube area leaks about 3 to 4 times a day which means we are constantly changing her clothes. She is such an easy baby because even though we have to rip the tape from her skin to change the gauze she stays still. She wants to move around more so she gets on her feet and then her arms are extended on the floor as if she is going to stand up but I think her legs are too little to support her whole body. I am looking forward to feeding tube to be surgerically closed so she can wear her bikini to the pool.


June 9 – Dr. Sayed, dentist, first dentist appointment, will have to wait to do xrays when she’s about 2 or 3 yrs old. He cleaned her one front tooth (she’s had since December) and we are hoping she gets more. He can’t tell because some areas have what he called buds while other areas had hollow.

June 11 – Dr. Swensson, echo cardiogram excellent, heart continues to heal and minimize the enlargement prior to surgery. Valve still moderate to mild not getting worse, will encourage regular activity with limitations now but her own limitations once she can speak and let us know. i.e., swimming always allow her to touch the floor or our knees, do not let her struggle to swim or breath under water, take it slow. We got a six month pass.

June 26 – Dr. Song,

Oral Therapy – Amanda continues to work with Amber, all food by mouth only, stage 2 working on different texture like crackers. Eating cheese and crackers, peanut butter and crackers, and Stage 3 but that’s harder she doesn’t like it. This is Amanda’s last month with Amber, she got promoted and will no longer work with kids. Requesting ICEC program to take over.

Physical Therapy – OT with Jeanie from ICEC program once a week for one hour, working on fine motor skills. Need to request physical therapist, and additional time to cover feeding and fine motor therapy.

ICEC – Tuesdays and Thursdays from 9am to 12pm group therapy, music, feeding, speech, fine and gross motors skills are worked on for about 15-20 each section. With a snack break in between, parent group discussion once a week.

May 2010

Amber is walking around with support more. She loves to read and look at books. She enjoys music...favorite song right now "Itsy bitsy Spider", she will put her hands up over her head and do the spider going up so you can start to sing. My favorite parts are when she starts to do her request. She has the best smile and is such a happy baby every morning she wakes up with a smile. She has discovered to tupperware cabinet and they go everywhere. She now hates the patch on her left eye and I have the feeling Dr. Song is going say we need to do it for more time.


May 1 – Pulled feeding tube out at home.

May 19 – Dr. Grant, rectal exam muscle contraction good, feeding tube area will not close on it’s own make appointment for surgical closure.

May 26 – Dr. Gibbs, appointment for surgery evaluation, need to make surgery appointment he is booked for 2 to 3 months out. Feeding area will not close on it’s own.

May 27 – Dr. Comulada, sick do breathing treatments and antibiotics due to long holiday weekend.


Oral Therapy – Amanda continues to work with Amber, all food by mouth only, stage 2 working on different texture like crackers. Eating cheese and crackers, peanut butter and crackers, and Stage 3 but that’s harder she doesn’t like it.

Physical Therapy – Started OT with Jeanie from ICEC program once a week for one hour. Need to request physical therapist.

ICEC – Tuesdays and Thursdays from 9am to 12pm group therapy, music, feeding, speech, fine and gross motors skills are worked on for about 15-20 each section. With a snack break in between, parent group discussion once a week.

April 2010

Amber continues to be my miracle. She does things on her own time, in her own way. This month she started crawling more and pulling her self up. Yes pulling on the couch and walking from one side of the couch to the other. Just like that from no crawling to pulling up and crawling. She babbles more and seems to understand everything you say in english and spanish or at least that's what I tell myself. She knows a few sign language words like more and all done. You know when she's all done because if you don't understand the signs she's make sure you understand her screams. She loves to sing...her favorite song right now is "Five Little Ducklings" and "The Wheels on the Bus"


April 13 – Elizabeth, Dietician, wants to continue to watch her wait try to introduce more fatty foods and milk intake to avoid using feeding tube.

April 14 – Dr. Crocket, Mission Viejo CHOC ear tube surgery

April 23 – Dr. Comulada, follow and vaccine.

April 24 – Dr. Song, surgery follow up, right eye lazy will need to patch left eye 1 to 2 hours a day until next appointment in June.

April 28 – Dr. Crocket, follow up to ear tubes all looking good. 6 month pass.

April 30 – Dr. Comulada, a little runny nose started using breathing treatments. Recommended to pull feeding tube out, haven’t used it in over five months might get infected.


Oral Therapy – Amanda continues to work with Amber, all food by mouth only, stage 2 working on different texture like crackers. Introduced to cheese and 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 – changed to ICEC program in Irvine twice a week, Tuesdays and Thursdays, she graduated from the 1 year and under program to 1-2 year old group 2 program.

March 2010

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.

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.

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.