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.

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).

Friends and Family

All About Amber

November 2009

This month we are so thankful to still be home... no hospitals and thriving.
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.

Halloween

The Last Three Weeks

I know it's been a while but I've been really busy.... taking the girls to school, helping with homework, physical and oral therapy, doctors appointment, trying to lose weight and spending time with my wonderful husband something has to give. I am glad I've been able to keep in touch with a few of you through Facebook, I can send messages from my phone and I keep a few updates that way. Well I can tell you that Amber is doing great. Her right eye has healed beautifully and has made such a huge difference with everything. She is able to see better which helps with her physical therapy and oral therapy.

Physical therapy - Amber is still working on rolling over, she doesn't really like being on her tummy so it makes it hard. She is reaching for things, putting things in her mouth, reaching for her toes, seating without help for a little less than a minute, rolls from side to side but not to her tummy yet.

Oral therapy - We've made big steps here, she is drinking 30 to 50 cc at every meal and then the rest goes in through her feeding tube (a total of 130 cc). She had another swallow study this week and she no longer aspirates. We are moving forward she has been eating a little bit of cereal in the morning but next week we will start foods... yeah bananas are first.

She is teething too, the front tooth is coming out. She babbles a lot and just loves to be outside and around people. Taylor really entertains her with all her jumping and dancing. While Kyana is the gentle, careful one who makes sure she doesn't cry too much. Because she's high risk, all of us got the flu shot and she already got the first swine flu shot. She will get a booster of that in a month and more vaccines too. The two flu shots put her behind on vaccines even more.

So so grateful everyday, so blessed and just thankful. Please keep praying for her success... thank you so much.

Also This Week

Right Eye Surgery... Back to CHLA

On Monday, October 12th we found ourselves back in the hospital. It was different this time because we knew what was going on and why we were there but the scary feeling was the same. We hoped and prayed that we could go home right away. She looked so cute in her scrubs, ready for surgery. The plan was to go in remove the scar tissue building around her pupil (making a triangle instead of a circle) to restore the shape and to implant, if possible, a lense. Dr. Song said it would take 30-45 mins but once there they said it would be at least an hour. We left her, had lunch and came back in 30 minutes. They receptionist gave us a big scare. She had a heavy accent, I can't talk because I know I have one here and there... anyways, I couldn't tell if she spoke Spanish or something else other than English. She looked at Kurt and I saying "Apnard?" We said "Amber" She said, "Wait right here, I need to talk to you about Apnard?" again we said "Amber?" She said, very excited again "I need to talk to you about Apnard" So we thought maybe she is saying Amber and we just don't understand her because we tried to clarify. Once she was able to speak with us she said, "Are you Apnard's parents?" We said, "Our daughter's name is Amber Brubaker" She said, "Oh sorry no I am looking for Apnard's parents, I need to talk to them". Off we went to the waiting room. It was two hours later and no news from Amber. Then another nurse came in the room, looked at me and said "Lopez?" I said, "No Brubaker" she said "Oh ok looking for Lopez"... I told Kurt, I might look like a Lopez but I married a Brubaker :-)... ok back to Amber. They had a hard time getting the IV started, I wished someone would have come out and said something.

All went well. She was intubated, scar tissue removal was successful, right eye lense implant was successful, and extubation was successful. They wanted to keep her overnight just to make sure. We came home, Kurt stayed with my mom, Kyana and Taylor while I drove back to spend the night with Amber. She was discharged the next morning after the Dr. removed eye patch and checked that everything was good. She needs eye drops four times a day for a month. We had a follow up on Saturday, October 17 in Pasadena. Dr. Song says everything looks good, continue the drops, make appointment to fit left eye for a contact lense, if things don't work out with the contact lense we might need to do implant on left eye. He would rather wait as long as possible for that implant but if it needs to happen then that will be our next surgery. As for the right eye, we will have another follow up in a month.

She is doing so great... thank you for all you do for us.

We've Been Really Busy...

In the last few weeks, Amber has come a long way. We've been home for over 3 months... I can't believe it. I've realized that ambulance and fire trucks scare me or just the ones coming close to our house. I also realized that "normal" is not as "normal" as I thought. The first two kids did not come with a manual but they did a lot on their own. They ate, rolled around, seat up, picked things up to put in their mouths, ate by the ounce and found their toes all on their own. Amber has to learn how to do the basic things including her toes and we get to teach her.

She started with just drops in her pacifier and now she drinks one ounce at every meal when she's awake, she takes the rest via feeding tube. Everyday she gets stronger, rolls from tummy to back and side to side. We are still trying to get her to go from back to tummy. She had a few more vaccines last week including the flu shot which they want everyone at the house to have plus the H1N1 when it's available.

We've added a new doctor to her list for her feet or I should say toes but like all the rest we have to wait and see what happens naturally before he can actively do anything. Dr. Song her Ophthalmologist will be doing a procedure on her right eye to remove the scar tissue. It is possible for her to get a lense in her right eye since it continues to get scar tissue, we will know more on Monday, October 12th, the day of her surgery. We don't know if she will need to stay over night, it will all depend on how she does during and after surgery. Please keep her in your prayers and send all your positive energy her way. Surgery scheduled for 9am. Thank you.

I Love My Daddy

Many Blessing for Amber

It was another busy week for Miss Amber. We've started Physical Therapy on Mon/Wed/Fri at 9am. She already has Oral Therapy Tues/Thurs at 9am, so it's a very busy week. Kurt's brother Daren came for a visit. We spent Kurt's birthday with the Varricchios and had lunch with his Grandparents today.

During the week Amber saw Dr. Crocret (ENT), he said she had fluid in her left ear and prescribed an antibiotic. Saw Dr. Sami (Ophthalmology) and found out the eye drops were not helping, they will have to go in to remove the scar tissue on right eye. Also on Wednesday we noticed some bleeding from her feeding tube site. Thank you to Molly Rapini and Janel Groussman for all your medical advice. The next day we saw GI and Neurology. GI said it would be fine and that the antibiotic for the ear would also help with her feeding tube area. The Neurologist was another story... it was a scary Thursday and Friday. Thank you to my mom, Robbie Baranoff and Katrina Fineberg for covering with Kyana and Taylor while we were dealing with Amber.

We had been waiting and looking forward to our appointment with neurology, to learn more about Amber. Dr. Lott came in touched her soft spot on her head, walked out, reviewed the films from CHLA CAT scan and CHOC's MRI, touched her head, walked out, touched her head again and asked if there were any changes or if Amber had been irritable. We said yes on and off but we thought it was the new eye drops, the increase in milk volume, the cereal we were adding to her night time milk, or skipping her 1am feeding. He said I need you to go to the ER to get a CAT Scan of her brain, I feel she is having pressure and will need surgery right away to relieve the fluid. He sent us to St. Joseph's next to CHOC in Orange because they have the pediatric neuro surgeon there. After four hours of waiting, doing the scan and waiting, they felt the fluidwas not significant enough to do surgery right away. We had the option of admitting her into the hospital for them to check her in the morning or coming back in the morning to see the Neuro surgeon. We took her home and came back in the morning. Dr. Muhonen said there was no need to do a shunt, which is a lifelong, life changing procedure to relieve fluid pressure from the brain. He said any baby that has been through what Amber has goine through would be irritable. The things to look for in Amber is lack of activity, sleeping a lot and golf size bump from her soft spot. We were relieved, my prayers were answered. We will have to follow up with both Neurologist (keeping track of her outside brain activity, moving, talking, walking, etc.) and a Neuro Surgeon (keeping track of her inside brain activity, flow of fluid and brain growth). The surgeon said the amount of frontal brain fluid should go away with age, about 18 to 24 months old. He also said the brain fluid was caused by the heart defect.

It was a good ending to our week, Kurt's birthday and family time. Thank you for caring about my Amber :-), for all your good thoughts, positive energy and prayers.

Doing Great

I am late again with the blog... sorry :-(

It was a very busy week and it's not going to get any easier. The girls started school Kyana in 4th grade with Mrs. Justl (4th/5th grade combo); Taylor in Kindergarten with Mrs. Buxton (Kyana's kindergarten teacher and an awesome person all around) and Amber continues to go with Amanda her Oral therapist.

On Tuesday, Amanda found a bottle by First Years which has the same feel as her pacifier from the hospital "soothie". What a great find, she took 3 cc on Tuesday, 10 cc on Thursday and today 15 cc... she is progressing. I didn't think it could happen but we will start doing home trials this week. I will have to get some bottles myself to have a back ups. We also started physical therapy... finally... on Monday, Wednesday and Friday.

I don't have any pictures to add this time but I will next time... my external hard drive crashed without warning or explanation but my wonderful husband brought it back to life. I would have lost all my pictures and videos of the girls... ALL.

So my girls have given me no personal time unless I decide to become a vampire :-)
Kyana has school from 8:15 to 2:35pm Monday through Friday possibly going to gymnastics on Fridays. Taylor has school from 8:15 to 11:45am Monday through Friday would like to find something for her to do after school once a week. Amber has oral/physical therapy 9:00am to 9:45am Monday through Friday with the usual once, twice or more times a week doctor appointments. This week Tuesday E.N.T. says she might have an ear infection due to extra fluid in the left ear; we will do antibiotics for 10 days. Wednesday is Ophthalmology to see if she will need surgery on right eye again to remove the scar tissue. Thursday is Neurology... also finally. I hope they don't cancel or reschedule this one.

As always, thank you for your good thoughts, prayers and positive energy. I will add pictures and update on Sunday :-). Take care.