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Post by tentoes on Aug 11, 2020 3:11:15 GMT
Praying for your family at this time.
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Post by shescrafty on Aug 11, 2020 3:17:01 GMT
I am so sorry what should be a time filled with joy is turning into such a difficult path for your sweet granddaughter Ava and family. I hope that there is some good news in the coming days for Ava and all who love her. 💕
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Post by jubejubes on Aug 11, 2020 3:35:59 GMT
Awww, I'm sorry your DIL is feeling so badly. Such a shock. Didn't ultrasound highlight the deformity? Would have given her a minute to adjust. My niece has VSD, and it was a bit of a rough start but she's a go-getter now. Cardiac treatment has come so far. Hopefully the cranio-facial surgical team will work their wonders too. Congratulations! Being a grandma is super fun! yes, but it was thought to be very minor. Turned out ALOT worse than originally thought. What a beautiful name, Ava. I was also wondering about ultrasounds during the pregnancy. I am very sorry for your DIL, as she probably hasn't been able to hold her beautiful Ava. Positive thoughts for the entire family.
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Post by ~summer~ on Aug 11, 2020 3:41:56 GMT
Aww hugs to you during this difficult time.
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Post by worrywart on Aug 11, 2020 3:48:23 GMT
Praying for Ava, her parents and the entire family. (((hugs)))
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Post by brynn on Aug 11, 2020 3:54:36 GMT
Praying for Ava
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pancakes
Pearl Clutcher
Posts: 4,993
Feb 4, 2015 6:49:53 GMT
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Post by pancakes on Aug 11, 2020 3:59:37 GMT
Thank you for the update. Praying for you guys. My heart breaks for your DIL and son.
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Post by vsimone on Aug 11, 2020 4:49:18 GMT
I am sending you all the positive energy I can muster. Hugs for little Ava and your family from someone who is also Grandma to a beautiful Ava xxx
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Post by andreasmom on Aug 11, 2020 4:51:16 GMT
🙏🏻🙏🏻🙏🏻🙏🏻
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AllieC
Pearl Clutcher
Posts: 3,057
Jul 4, 2014 6:57:02 GMT
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Post by AllieC on Aug 11, 2020 5:20:31 GMT
Sending much love to your and your family.
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kim68
Full Member
Posts: 295
Jun 26, 2014 2:52:12 GMT
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Post by kim68 on Aug 11, 2020 6:00:08 GMT
Congratulations on your new granddaughter! Sending prayers and positive thoughts for your family.
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Post by gar on Aug 11, 2020 10:14:18 GMT
I'm so sorry that Ava is having such a tough start in life...and poor Mummy and daddy too, so so hard for you all. I wish Ava a real fighting spirit and strength to thrive.
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Post by katyscrap on Aug 11, 2020 10:20:09 GMT
yes, but it was thought to be very minor. Turned out ALOT worse than originally thought. What a beautiful name, Ava. I was also wondering about ultrasounds during the pregnancy. I am very sorry for your DIL, as she probably hasn't been able to hold her beautiful Ava. Positive thoughts for the entire family. They did have ultrasounds and knew about the heart (VSD) and cleft/lip and palate. I don’t think we were prepared for her to be this sick though. We thought she would have the heart surgery then the cleft surgery and be ok. When she was born, she had more complications that we thought, that’s why they did the genetic testing to see the underlying cause of the problems. She has been on a ventilator and sedated so we don’t know about blindness, deafness, neurological issues or any of the other issues associated with CHARGE.
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Post by stargazer on Aug 11, 2020 11:26:04 GMT
Sending lots of love in these scary times. Hope that as more answers come it gets less scary.
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Post by catck on Aug 11, 2020 18:03:32 GMT
I'm heartbroken for all of you. Hugs and love to Ava and her family.
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Deleted
Posts: 0
May 17, 2024 3:49:51 GMT
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Post by Deleted on Aug 11, 2020 18:31:47 GMT
sending lots and lots of prayers.
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Post by sabrinae on Aug 11, 2020 20:50:14 GMT
I’m so sorry. Best wishes for Ava, her parents, and you and the rest of your family. What a difficult challenge. I hope the Drs and medical team are able to provide all of you with some answers and plans to address her needs.
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River
Pearl Clutcher
Posts: 3,514
Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Aug 11, 2020 20:59:22 GMT
Checking in for an update after meeting with all the doctors. Still praying!
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Post by fruitysuet on Aug 11, 2020 21:00:14 GMT
Although the diagnosis must be hard to hear and get to grips with, the positive is that she has a diagnosis. She will be able to get all the right specialities to treat her. I really hope that there is some professional support available to you and her parents to understand this and be able to find strength in that knowledge. I hadn't heard of this syndrome so I googled. Although this is a UK site it has a vast range of different fact sheets which may be helpful. Saying that, my own DD had a very rare form of childhood epilepsy and googling didn't do much except panic me as many others with the same type of epilepsy tended to have a much more complicated range of medical issues. So, it's good to have knowledge but also know that there will likely be a wide scale of how anyone is affected and how life is impacted and this is something that may not be apparent for sometime. I am keeping you, Ava and her parents in my thoughts. www.sense.org.uk/get-support/information-and-advice/conditions/charge-syndrome/
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Deleted
Posts: 0
May 17, 2024 3:49:51 GMT
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Post by Deleted on Aug 11, 2020 21:44:15 GMT
Prayers for baby Ava's safety & better health. How scary for you and the entire family and her parents.
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janeliz
Drama Llama
I'm the Wiz and nobody beats me.
Posts: 5,633
Jun 26, 2014 14:35:07 GMT
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Post by janeliz on Aug 11, 2020 21:47:44 GMT
Prayers for your family. I’m so very sorry you all have to endure something like this.
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quiltz
Drama Llama
Posts: 6,708
Location: CANADA
Jun 29, 2014 16:13:28 GMT
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Post by quiltz on Aug 13, 2020 19:22:02 GMT
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Post by christine58 on Aug 13, 2020 19:56:28 GMT
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huskergal
Pearl Clutcher
Posts: 2,999
Jun 25, 2014 20:22:13 GMT
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Post by huskergal on Aug 13, 2020 22:09:53 GMT
I will be praying for your precious granddaughter.
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TankTop
Pearl Clutcher
Refupea #1,871
Posts: 4,775
Location: On the couch...
Jun 28, 2014 1:52:46 GMT
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Post by TankTop on Aug 13, 2020 22:59:26 GMT
I am so very sorry. Sending thoughts of strength.
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Post by pierkiss on Aug 13, 2020 23:33:33 GMT
I hope sweet Ava is doing ok. And the rest of you. I’ve been thinking about you all.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Aug 14, 2020 1:43:27 GMT
I haven't commented yet, but your family is very much in my thoughts. What a very difficult situation for little Ava, her parents, and you and the rest of those who love her. I'm so sorry.
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Post by katyscrap on Aug 14, 2020 13:26:00 GMT
ventilator is out and they got to hold her! First heart surgery is scheduled for next Tuesday/Wednesday. Now that she is awake, hopefully they will test her sight and hearing soon. We are anxious to see if she has any vision or hearing. The first cleft/lip palate will be done at 3 months, 2nd at 5 months and 3rd at 8 months.
We facetimed to see them hold the baby for the first time. She was so content in their arms. Poor little darling, it must have felt good to be held.
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Post by Rainy_Day_Woman on Aug 14, 2020 13:50:52 GMT
How exciting that they finally get to hold her! I am sorry- all the waiting and unknowns are hard, and I hope holding her makes them a little easier. I work with the hard of hearing and have several lovely patients with CHARGE syndrome. It is still so early, but there are great communities online and hopefully locally that can be a good resource for you as she grows. Also, what a beautiful name! My thoughts are with you and her now and during her surgery
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Post by gillyp on Aug 14, 2020 13:55:50 GMT
Oh wow, that is a little positivity! I know she has a tough road ahead of her but to have so many procedures already discussed and proposed time scales must be a scrap of comfort right now. I am so pleased you have seen her being held.
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