Here are some photos and videos of how Annelise has been spending her days. This weekend we will be able to update about the new hearing aid she will be getting!
New pajamas :)
Annelise Faith
Tuesday, March 30, 2021
3/30/2021
Thursday, March 18, 2021
3/18/2021
Annelise is wearing her light blue and Trisomy Tribe t-shirt for Trisomy 18 awareness day!
Because of other families spreading awareness of hope beyond the bleak statistics, Kevin and I searched for a hospital that wouldn't deny Annelise a chance at the heart repair that would be be standard care for a baby born without an extra 18th chromosome.
Glory to God for leading us to Omaha, NE, and the medical professionals there who treated Annelise as the whole and complete person that she is. We will keep spreading awareness so more families will be able to stay where they are for heart repair. Omaha is the best.... but it snows there! Come on California!
(It is totally possible.... in the time since we returned from Omaha, a CT surgeon at UCLA has stepped up and performed heart repair for our T18 brothers and sisters.... there was also a family in Davis who successfully got the hospital to change their stance on heart repair for babies with T18. These parents are heroes! Pass it on, keep it up!)🥰
3/13/2021
Annelise wore yellow to celebrate and show love to her buddies with an extra 13th chromosome. We love our amazing friends with T13💛💚💖😁
She's also making some attempts to push herself up with her arms while on her tummy!
Her PT just reminded me this week that while she still has some work to do... it wasn't all that long ago that she didn't want her arms anywhere but down at her sides, kinda like a superman pose, so she has made some great progress already!🥰
Thursday, March 11, 2021
3/10/2021
Happy 21 months Annelise!
We went to see her orthopedic surgeon today for a check-up on her fancy feet. Kevin and I could use prayer for wisdom to make the best choices for her hips in the future. Surgical repair might be an option, but there are many pros and cons to consider. We really respect and trust our orthopedic surgeon though, and are happy he is on Annelise's team!
Many of our specialists' offices have moved into a new facility that they just finished building next door to our hospital, called the Children's Village. It feels so much nicer than the old office buildings or the basement of the hospital! The colors remind me of our Omaha hospital, and I love thinking about those guys!😁
They also have their own blood draw lab. I am excited about that, because on Monday, we went to get blood drawn for Annelise from our insurance-approved lab, and they couldn't get enough from her tiny veins to be able to do either of the tests we had ordered.😭 It was such a sad morning. How awful to get poked twice for nothing☹. I'm hopeful that the lab that only sees kids will have more success!
I am so grateful for every day with this girl, and just have to shout praise to God for giving us every month milestone to celebrate! 😍🥰❤
Thursday, February 11, 2021
2/10/2021
Happy 20 months to our amazing Annelise Faith! She has finally bumped up to size 3 diapers, is doing well with blended food through her g-tube during the day with some formula overnight, and is actually NOT allergic to avocados!!🥑🥳🤩
We realized that she had grown intolerant over time of her prophylactic antibiotic that she takes to protect her kidney. It happened gradually, but some of the symptoms started right when we introduced avocado.... so we thought that was the culprit. Tried them again and she is good! We tried a different med too so she is good all around now❤
The next big thing will be for her to get measured for a stander. It is a piece of equipment that will support her and allow her to practice being upright and bear weight on her little legs.
Kevin and I were able to get the covid vaccine, so we are really thankful for that added layer of protection! Just the first dose so far.
Enjoy some photos of the last few days.
I'll also leave this link to my newest favorite song that prompts me to recognize that nothing is too hard for the Lord!🥰
Saturday, February 6, 2021
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