First Outing

On Tuesday, oral therapy didn't go so well. Amber did not like the bottle, the E-stem, the milk... I have no idea, she was not happy. I was hoping and praying that Thursday would be better. Thursday WAS better, she has a few swallows and was good with the bottle, we are making slow progress. On Saturday we went to Ian's 6th birthday party at the park. She had a great time. It was so good to see everyone and have everyone see how well she is doing. Angela, Eric and their families have been praying for Amber since before she was born and have followed all our ups and downs, they were so happy to witness such a great up. She loved being there, seeing all the kids run around and feel the HEAT... with some breeze here and there.

This week will be really busy and hopefully really informative. On Tuesday we will see the Genetics Doctor, Wednesday we have Ophthalmology, Thursday is GI, Friday is Neurology and of course Tuesday and Thursday our regular oral therapy sessions. It will be a busy week but we will get to learn more about Amber and what she will need in the future.

We continue to be grateful for all your wonderful and positive thoughts, messages, prayers, calls and love. Thank you so much.

Still Waiting for Physical Therapy

On Friday two ladies from Regional Center came by to see what Amber needed. They decided she would get one hour a week of physical therapy... now they have to find the therapist to come to the house. I hope they don't take too long. She had her second swallow session on Thursday using the E-stem, she didn't like it. Therapist said it will take some time for her to get used to having liquids in her mouth and needing to clear them down her throat. I hope this week is a better week. On Saturday we had a little scare... although it hasn't happen again we haven't heard back from GI, there was a little bit of blood that come back from her feeding tube into the venting tube. The blood was the size of your thumb nail and bright red. I will call GI on Monday to follow up, but can you believe it they still haven't called us back.

We continue to take our family Sunday walks which she loves. She looks around and takes it all in. We've been putting her on her tummy this week and I will continue that in her daily exercises. She is coming along and getting older. We have some appointments coming up in two weeks so I will find out her current weight... funny when you are young how important it is for you to gain weight but then when you get older all you want to do is loose it :-)

Thank you for all your thoughts, positive energy and prayers. Have a good week.

Talking and Moving

Amber is doing great... thank you for continuing to pray for her health, growth and strength. And of course for all your prayers for our family, we are very grateful. We praise the Lord for all these miracles he has done for Amber.

This week oral therapy was not too good. On Tuesday the therapist forgot the bottle in her office across the street so we did the same old same. On Thursday Amber had her first bottle feed. She was really interested in the milk but did not know what to do with it. Next week (current week) we will try to bottle feed while also doing the E-stem therapy. This is where she receives little shocks to help her muscles contract. We are hoping that with this, she will swallow as the milk comes from the bottle. Again, we will do this a couple of times and then re do the swallow study.

Amber is doing her baby talk more and more. She is also moving around and turning from side to side. We put toys in front of her and she tries to reach for them. She is doing really good inspite of the lack in much needed physical therapy. There should be someone coming on Friday to see when that will start. I hope it's soon.

I was unable to download a video of Amber talking but I have it on Facebook if you are interested in seeing it... I will try again here but not sure if it will take. Kyana continues to be the big helper, sweet girl while Taylor continues to be my challenge. I understand her though... I was a middle child too :-). Nothing else to report, it was a good week... I turned another year older, took Kyana and Taylor to Disneyland along with a few friends (Maria, Eddie, Maribel, Gary and Brooke) then we all met up Paul, Jill and Sarah Beth for dinner while my hubby had Amber at home. Oh and I got to sleep in, my husband is the best... Good Job Dave and Linda.

Today - August 10th

Thanks to Al, Melanie and Maria for coming over and making today so special for Amber and our family... you guys are the best. We had some delicious veggie sandwiches and yummy chocolate cake (even Kyana had this cake). YOU GUYS ROCK !!!

6 Months Old

Amber continues to do well at home. She is doing oral therapy twice a week. This coming week we are going to try 5 cc of milk with a bottle. I am very excited about that, if she does well for two weeks they will try the swallow study again. I did figure out that therapy will be for a long time, not only does she need to learn how to bottle feed, she will need to learn to eat with a spoon watery, solid foods. We take it for granted but it takes lot of cordination to eat, taste and swallow. I am happy to say she is 11 lbs 8 oz according to the scale at the cardiologist office... woohoo. Cardiology did not increase or change her lasix, he said to let her out grow her dose.

Tomorrow she turns 6 months old, crazy how time flies. She desperately needs physical therapy more than what I do with her at home. We are waiting to be evaluated by someone else on August 21st, that makes two visits by the same department and nothing. She gets really stiff and tense when she has gas or is just unhappy for whatever reason (still not sure if its brain related).

I might be late with the blog next Sunday, it's my birthday and I am taking Taylor and Kyana to Disneyland. I wish I could take Amber but I am not that brave yet. So check on Tuesday instead of Monday for an update :-). It will be an easy week, just oral therapy.

I did get some sad news that I wish you could pray with me on. Laura and Mike lost their baby boy Mikey after nine months in the hospital on Tuesday, August 4th. Mikey's journey brought his parents from Ladera Ranch to Los Angeles. Even though we live a city apart, we met miles away. It was this meeting that gave Amber the best Cardio Surgeon in the Nation, Dr. Starnes. They had been there since December, we went for the first eye surgery in March and they recommend the dr. He was not only able to fix the chamber but adjust the tricuspid valve from severe to moderate/mild at an earlier date than expected... at the time she needed it. The other doctor wanted to wait til now (6 to 9 months old 10 to 11 lbs). His funeral and service will be tomorrow at 930am, please pray for his parents and family for peace.

I continue to be so grateful for all your positive energy, prayers and advice... God is listen and Amber continues to thrive at home.

Sunday, 08/02/09 - She is 10 lbs 14 oz

What a week... I started with just two little appointments that turned into a full week. Monday was quiet but then the week really got started. On Tuesday and Thursday Amber started E-stem therapy for swallowing, I am excited to introduce breastmilk next week. We are just dipping her pacifier in it but it's something. She doesn't like having the little leads on her neck but that's what helps stimulate her muscles on her throat so we go. On Monday I got a call from the Endocrinologist for a Wednesday appointment. The appointment was at 830am, they started at 9am. They had to start an IV to draw blood for testing and for medicine administration. The blood had to be drawn every hour for three hours. As they were poking her, I said my poor baby she is getting poked tomorrow for her first set of vaccines. I am so glad that God put that thought in my head. They said, oh no you should not be doing any vaccines until we get results from this test. If her adrinal gland is off and she needs hormonal supplements she will not be able to handle the vaccine shots, she could be back in the hospital. They decided to do the labs in house to get the results faster for me, and after 4 hours there we went home.

On Thursday, at her pediatrician's office we hadn't heard any of the lab results so we decided to postpone the vaccines... as I was walking out the room, I got the call. Thank you Lord, all is well with her hormones no supplements needed... now little baby got poked again, 3 shots / 5 vaccines. Dr. Comulada said to do Tylenol for 24 hours to avoid any problems.

On Saturday, we had another eye appointment, this time it was in his Pasadena office not at CHLA. It was so much better, no waiting, no crowds, no parking problems, and best of all lots of hands to help... it was a family trip. Dr. Song says her eyes are great, continue the patch on left eye and drops on right eye until we see him again in two months. The surgery to replace the lenses in her eyes would more than likely happen when she is 9 years old.

While we were in Pasadena, now with a few vaccines in her, we decided to have lunch at the Old Spaghetti Factory... what Weight Watchers... she was pretty good with one diaper change and one little fuzzy time from wanting to sleep and then slept the whole time we were there.

I am sad to say I am running out of breastmilk so the GI doctor said to start mixing formula with breastmilk until is just formula. This is causing her to poop less so we will see where we go from here. Please no constipation...

We had another family walk, she is loving the outdoors, should I be worried? She is going to be my party girl, hanging out with everyone and out all the time.

This week we continue swallow therapy twice a week and an appointment with cardiology on Friday. Oh and Amber made it to church on Saturday too, Pastor John gave her a blessing. It was such a great feeling to be able to do that. I can't wait for her baptism. As always, thank you for all your prayers and positive thoughts... I pray that Amber continues to grow, gets rid of the gasses, starts to swallow so she can eat from her mouth, that the genetics doctor have some answers, that neurology can tell us more about her brain and that regional center can get someone to start her physical therapy soon.