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.