YouTube Kevin and Annelise video
Annelise Faith
Thursday, June 25, 2020
6/21/20
Little update on what we've been up to....
After pushing back scans and in-person appointments for Annelise during this quarantine time... we had THREE this past week! I don't like the quarantine, but I do love that Kevin is still working from home for the time being. In addition to him just being overall awesome to be around...he gets to take us to appointments😁 We have one more MRI to go to this week coming up, then it's back to quarantine land. We have sooooo many more options for fun at home now, since Annelise was showered with sweet gifts and love for her birthday. I am so excited for her to explore and learn with her new toys! Just yesterday, we put a toy in front of her, and she started playing with it with both hands at once, one of the goals for her in OT! And she did it again with a different toy today! These little successes are BIG. Here are some photos and videos of her playing with some of her birthday gifts🦄🥳💗
YouTube video of Annelise playing
After pushing back scans and in-person appointments for Annelise during this quarantine time... we had THREE this past week! I don't like the quarantine, but I do love that Kevin is still working from home for the time being. In addition to him just being overall awesome to be around...he gets to take us to appointments😁 We have one more MRI to go to this week coming up, then it's back to quarantine land. We have sooooo many more options for fun at home now, since Annelise was showered with sweet gifts and love for her birthday. I am so excited for her to explore and learn with her new toys! Just yesterday, we put a toy in front of her, and she started playing with it with both hands at once, one of the goals for her in OT! And she did it again with a different toy today! These little successes are BIG. Here are some photos and videos of her playing with some of her birthday gifts🦄🥳💗
YouTube video of Annelise playing
Friday, June 19, 2020
6/17/2020 - Heartiversary!
Today is the one year anniversary of Annelise's heart repair surgery! Happy heartiversary baby girl!!❤❣💖❣❤❣💖 Glory to God! So grateful for how He has written her story🥰
The top photo is a pillow from the hospital gift shop (that I just haaaaad to buy of course!). It is sitting on a couch next to the hospital coffee shop where Annelise's cardiothoracic surgeon, Dr. James Hammel, came to meet with Kevin and I in order to have the conversation where he explains his plans for the heart surgery, and the possible outcomes, both good and scary. I'm glad I got a photo of the spot to remember that moment.... since I didn't go dumpster diving for the napkin he tossed that he had quickly sketched, by heart, a super detailed drawing of her specific heart with her unique anomilies.🥰❤
There are so many layers to all the feelings I've had this past week. What I want to focus on now is the celebration of that moment in Omaha. Talking with a busy CT surgeon who would have a full schedule without all the babies with Trisomies who travel to see him from across the states.... but he still takes the time to be their voice. To share data and experience with other providers, so that other hospitals might recognize how far these sweet tiny people can go if they would just give them the same help that they would give another baby with the same condition who has 46 chromosomes.
Our story could have looked like us delivering Annelise locally, and not having the option for heart repair. We would have made her as comfortable as possible with the resources we had, and her little heart would not have been able to supply the rest of her body with blood. It would have tuckered out. There would not have been her 1st birthday celebration, there would not have been the stacks of memories we have with her. I would not know what it's like to see her face absolutely light up with an ear-to-ear grin after she gets a kiss on the forehead, her favorite, from her daddy.
I would have a lot of time in the day to get stuff done. My garden would look amazing. Forget that! Praise the Lord I have no time for my garden! I have a baby in my arms and she is absolutely our sunshine! Because Dr. Hammel and Omaha said yes. He repaired her heart, and the rest of those fine folks helped me with my heart as they set Annelise up for success and took amazing care of her every day for 99 days until we got on the plane to come home!
They said yes, Annelise is valued.
That's a cause for celebration as much as her successful heart repair!! Whoohoo!!!
P.S. Guess what! This past year, there have been some heart surgeries for babies with T18 and T13 at UCLA!!! Times are a changin'! Onward, let's go!🥰🤩😍❤
The top photo is a pillow from the hospital gift shop (that I just haaaaad to buy of course!). It is sitting on a couch next to the hospital coffee shop where Annelise's cardiothoracic surgeon, Dr. James Hammel, came to meet with Kevin and I in order to have the conversation where he explains his plans for the heart surgery, and the possible outcomes, both good and scary. I'm glad I got a photo of the spot to remember that moment.... since I didn't go dumpster diving for the napkin he tossed that he had quickly sketched, by heart, a super detailed drawing of her specific heart with her unique anomilies.🥰❤
There are so many layers to all the feelings I've had this past week. What I want to focus on now is the celebration of that moment in Omaha. Talking with a busy CT surgeon who would have a full schedule without all the babies with Trisomies who travel to see him from across the states.... but he still takes the time to be their voice. To share data and experience with other providers, so that other hospitals might recognize how far these sweet tiny people can go if they would just give them the same help that they would give another baby with the same condition who has 46 chromosomes.
Our story could have looked like us delivering Annelise locally, and not having the option for heart repair. We would have made her as comfortable as possible with the resources we had, and her little heart would not have been able to supply the rest of her body with blood. It would have tuckered out. There would not have been her 1st birthday celebration, there would not have been the stacks of memories we have with her. I would not know what it's like to see her face absolutely light up with an ear-to-ear grin after she gets a kiss on the forehead, her favorite, from her daddy.
I would have a lot of time in the day to get stuff done. My garden would look amazing. Forget that! Praise the Lord I have no time for my garden! I have a baby in my arms and she is absolutely our sunshine! Because Dr. Hammel and Omaha said yes. He repaired her heart, and the rest of those fine folks helped me with my heart as they set Annelise up for success and took amazing care of her every day for 99 days until we got on the plane to come home!
They said yes, Annelise is valued.
That's a cause for celebration as much as her successful heart repair!! Whoohoo!!!
P.S. Guess what! This past year, there have been some heart surgeries for babies with T18 and T13 at UCLA!!! Times are a changin'! Onward, let's go!🥰🤩😍❤
Thursday, June 11, 2020
Celebration
Tuesday, June 9, 2020
6/08/20
Put some toys in front of this little baby and she looks like such a big girl all of a sudden!
We love these blocks and are so thankful to the thoughtful person that got them for her! I'm almost to the end of the list of presents that didnt come with any info on the gift-giver. Let me know if it was you!🥰
2 more days until she is ONE!
I didn't realize how sad I was about not being able to be around the people who have celebrated her with us since before she was born. We were on a Zoom call with our small group from church, and I felt myself tearing up all of a sudden talking about all the preparations we were doing to decorate our lawn, even though it's just going to be a party of 3 in our house. I'm confident in our choice to try and make our bubble as small as possible right now.... with a respiratory pandemic and her being so young and complex. I'm praying for her to take this milestone of year #1 and run with it so that we can plan many more parties in the future that extend beyond 3 guests 🥰
Keep painting those rocks for #AnneliseRocksYear#1
They are amazing!
If you have one that you'd like to give to the birthday girl, come check out our birthday lawn and drop off a rock in the rock garden we are starting for her milestones. Haha! Mile"stones"... get it! I didn't even mean for that to happen!🤣
We love these blocks and are so thankful to the thoughtful person that got them for her! I'm almost to the end of the list of presents that didnt come with any info on the gift-giver. Let me know if it was you!🥰
2 more days until she is ONE!
I didn't realize how sad I was about not being able to be around the people who have celebrated her with us since before she was born. We were on a Zoom call with our small group from church, and I felt myself tearing up all of a sudden talking about all the preparations we were doing to decorate our lawn, even though it's just going to be a party of 3 in our house. I'm confident in our choice to try and make our bubble as small as possible right now.... with a respiratory pandemic and her being so young and complex. I'm praying for her to take this milestone of year #1 and run with it so that we can plan many more parties in the future that extend beyond 3 guests 🥰
Keep painting those rocks for #AnneliseRocksYear#1
They are amazing!
If you have one that you'd like to give to the birthday girl, come check out our birthday lawn and drop off a rock in the rock garden we are starting for her milestones. Haha! Mile"stones"... get it! I didn't even mean for that to happen!🤣
6/07/20 midnight talks are awesome!
Someone slept all day yesterday and then wanted to make up for it by staying up till 3am!😳😴 I'm so lucky Kevin makes great coffee😍
There's an amazing video of her vocalizing. A must watch in my opinion 🥰🥰🥰
3 days until she is officially ONE!
Here are some pics with her playing with another sweet gift that didn't come with any info about the gift giver! Please let me know if you were the one to send us these beads for her sensory play! She was mesmerized by them😆
Annelise "talking"
There's an amazing video of her vocalizing. A must watch in my opinion 🥰🥰🥰
3 days until she is officially ONE!
Here are some pics with her playing with another sweet gift that didn't come with any info about the gift giver! Please let me know if you were the one to send us these beads for her sensory play! She was mesmerized by them😆
Annelise "talking"
6/05/20
We have already known a whole new level of support from you, our friends and family this past year. On top of that, Annelise has lovely wishes and birthday gifts dropped off by Amazon almost daily! We really feel the love! My plan is to get photos or videos of Annelise with her birthday gifts so y'all can see what you got her. 😁A few people have asked me about her wish list, here it is!
https://www.amazon.com/hz/wishlist/ls/2T903DZL9G4OP?ref_=wl_share
Her occupational therapist and physical therapist are going to be thrilled with all of the cool new toys she is getting. I know I am! Look at this one!
Our new goal is head/neck control, and we are hoping that by having fun toys on a tray in front of Annelise, they will capture her attention and naturally bring her focus down to the tray, instead of always looking up at the hanging toys. This will create more opportunities for her to use those neck muscles and we'll hopefully see her getting stronger so that it will be easier for her to keep her head midline.
She will also be able to interact differently with toys on her tray.... so many opportunities to learn and use her noodle 🥰🤩😁
I searched high and low, but could not find the little paper that tells me who this gift is from! Who was it? Check it out, she loves it!🥰
https://www.amazon.com/hz/wishlist/ls/2T903DZL9G4OP?ref_=wl_share
Her occupational therapist and physical therapist are going to be thrilled with all of the cool new toys she is getting. I know I am! Look at this one!
Our new goal is head/neck control, and we are hoping that by having fun toys on a tray in front of Annelise, they will capture her attention and naturally bring her focus down to the tray, instead of always looking up at the hanging toys. This will create more opportunities for her to use those neck muscles and we'll hopefully see her getting stronger so that it will be easier for her to keep her head midline.
She will also be able to interact differently with toys on her tray.... so many opportunities to learn and use her noodle 🥰🤩😁
I searched high and low, but could not find the little paper that tells me who this gift is from! Who was it? Check it out, she loves it!🥰
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