Wednesday, January 27, 2010

Making progress

We are loving having our little miracle girl Haley home with us. She is a handful, but she brings so much joy and happiness into our home. She likes to be held, talked to and loved. Daddy loves to kiss all over her and show his love to her. Haley has been having a hard time with reflux. Her pediatrician prescribed Prevacid. We think it has helped some, but she gets so fussy when she is fed. Haley is sporting a new look with her new glasses. We finally got them and she has been wearing them despite not liking to wear them. They are a hassle to keep on her, but she needs them to help her right eye focus and see. Seeing her with those glasses on make me laugh. She is a cutie! I think Haley has made some developmental progress since she has come home. ECI came to our house today and started the process of getting therapies for her vision impairment and OT.

Haley wearing her new pink glasses.





Rachel is doing well. Her oxygen has been decreased to 1/4 liter and she is tolerating it well. Tomorrow OT is going to start oral/motor therapy and next week let her take a bottle. We think she will do well taking the bottle because she sucks on her pacifier so well, but we will see. This is a big step for her to coming home. We have been waiting for a long time for Rachel to take the bottle. Rachel has done very well since the g-tube and fundo. As much as we really didn't want her to get the g-tube and fundo, we are glad she did because she has been making a lot of progress since. We still have not been given an idea of when she will come home, but we feel it is getting closer.

Rachel looking cute.

23 comments:

  1. I LOVE the pink glasses! She looks sooo cute in them! And that is an adorable picture of Rachel too! What amazing miracles! I know it isn't always as easy as you make it sound, but they are both sooo beautiful and amazing!!

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  2. They are SOOO adorable! The glasses are awesome. Good luck with everything, you guys are doing amazing.

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  3. so danged cute! the babies and Haley's pink glasses - if you've got it, flaunt it baby!! and Haley darlin' you've got it!!
    Little Rachel looks so wonderful! so glad to see them both! been missing you guys....
    Lovies!

    Erma, Midvale Utah

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  4. Hi Amanda,
    My daughter gets respite care services from ECI which means the regional center pays someone to watch her. You do not have to go anywhere, just a little time to yourself while someone watches your precious little one. If you are not comfortable with a stranger right now watching your daughter, you can have someone like family or friend watch and get paid for respite services while you take a break. I wasn't comfortable with a respite care worker until my daughter was a year and half. Just something for you to think about down the road especially when you will have two to take care. You can ask your service coordinator about how many hours you can get. I have 24 hours for the month. The respite care worker comes two hours every three or four days depending on her schedule. If you have any questions that I can help you with, please email me at nicolehuynh@gmail.com

    Thank you again for posting your updates and photos. I love your girls and they don't even know me.

    God Bless,
    Nicole from Rosemead, CA

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  5. Love love the glasses so cute! And Rachel what a sweet heart. Thank you for the wonderful update. I love to hear about them and feel your wonderful spirit.

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  6. Those glasses are ADORABLE! And hopefully will help her little eye focus so she can enjoy the world around her. I'm glad to hear Rachel is progressing as well. I hope she is a champ when she gets to try the bottle!

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  7. The glasses are adorable and it's great to read the progress both of the girls are making!Praying the bottle feeding goes beautifully.

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  8. I am so glad the girls are making such progress!! Praise God!

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  9. If the reflux continues you might want to ask them if switching to a different type of formula might help. We went from regular Enfamil to the Gentlease brand and it did wonders for my son.

    Amanda

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  10. I hope the prevacid works for Haley, both of my girls are still on it. It does take a lil time for the med to kick in. I know how hard it is to watch them be in pain from the reflux. Her glasses are so cute!!

    Rachel...you keep up the good work and hopefully you'll take to bottle feeding like you did to the pacie!!

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  11. I LOVE the glasses, they are so precious on her. My twins had reflux really bad. We used nap nannies to feed them in and for them to sleep in for the first few months at home, they are 9 months old, I still bottle feed them in them but they can sleep flat in their cribs now. Go to napnanny.com and check it out. I also have some pics on my blog. Good luck with everything.

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  12. Cute, cute, cute!!! Haley looks adorable with her pink glasses! The pictures are so nice! I can imagine how nice it is to have her home with you!

    Rachel is definetly doing better after she had surgery. I don't remember seeing her this alert and happy! She is precious! She is about to go home. Her O2 levels are good to go, and she will start taking the bottle. I guess she will be home in about 2 weeks or so.

    Thank you for taking the time to share the pictures and news with us!

    Love, Claudia

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  13. SHE IS ADORABLE WITH THE GLASSES. MY DAUGHTER HAD TWINS A BOY AND GIRL AT 30 WEEKS. THE GIRL GOT GLASSES AT 10 MONTHS. SHE IS A DOLL. SHE IS NOW 5. WE HAD TO GET THE BAND THAT GOES BEHIND THE HEAD TO HOLD THEM ON. THE LITTLE BOY TWIN HELPED HER PULL THEM OFF WITHOUT THE BAND. JUST WAIT YOU WILL HAVE TO ACCESSORIZE HER GLASSES WITH HER OUTFITS SOON. DANIELLE, OUR TWIN WITH GLASSES ASK FOR SARAH PALIN GLASSES FROM SANTA. SO SHE GOT SOME AS AN EXTRA PAIR THAT HAD THE TRANSITION LENSES. CUTE AS A BUTTON. PRAYING FOR YOU.

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  14. They are adorable! Your family has been in my prayers and I am so happy for you that you have Haley home, with Rachel soon to follow!

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  15. Haley and Rachel both look so cute in these pictures! I bet Rachel is just going to start flying now!

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  16. Love these pictures of the girls and I see Rachel is getting some really cute expressions now!! They are so Blessed to have you 2 as parents too!! What joy must be felt in your home as you bring them home.

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  17. What a doll in her glasses - they are so cute!! We are thrilled to hear about all the progress that is being made by all. The blessings continue to flow to your family. We continue to pray for you. Love from Salt Lake City.

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  18. What cute girls you have!! I love the pink glasses. They made me giggle a little.

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  19. Miss Haley in her glasses is just so sweet!!! Rachel looks like she is also doing well and hopefully will continue to get lower and lower on her oxygen levels so she can come home.

    One question, with the six were any of them twins??? Rachel and Haley look A LOT alike so I just wondered???

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  20. One of our twins is now almost 21 months old and still struggles with reflux. She had a feeding tube in multiple times and it took months before she would eat all her bottle. You might also want to ask using Nexium as Haley gets older because it really seemed to make a HUGE difference combined with Zantac...prevcid never really seemed to work for her. Just a thought!

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  21. Hello and congratulations on having your daughters home!

    Barbara

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  22. Those little glasses break my heart, but at the same time they are so stinkin' adorable! I hope they help her little eyes. I am glad to hear Rachel is doing better. Your precious little girls are so blessed to have you as parents.

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