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Hello everyone! I hope you all are having a great 2020 so far. I just wanted to give a little “Josie update” on how things are going with her lately.
Josie is now a solid walker and walks everywhere! She LOVES to go outside and pick up any leaf or stick she can find.
Her personality is totally blossoming lately. She is such a happy, silly, fun girl. She loves to be near her mama at all times! She also loves to read books, climb on all the furniture, dance, play with the cats, and eat snacks.
When she “reads,” she will flip through the pages of her board books and point at the pictures. Then she grunts as if to say, “What’s this, mom?” As soon as I tell her what it is, she points to the next picture, and so on.
Josie also likes to carry around matching pairs of Little People. She will pick out two giraffes, or Elsa and Anna, or Superman and Wonder Woman. Then she just walks around the living room with one in each hand. I’m amazed that she can tell which ones go together, especially Elsa and Anna since she’s never really watched Frozen!
Josie’s favorite foods lately are sausage, green beans, beets, berries, meatballs, carrots, avocado, blueberry waffles, peanut butter, nectarines, tomato, kiwi, olives, daddy’s yummy almond flour and Parmesan crusted pork chops, daddy’s garlic-butter steak, Snapea crisps, Babybel cheese, and of course CHEERIOS!
She drinks whole milk out of a straw cup at every meal. (We use the honey bear cup from ARK Therapeutic and I highly recommend it.) Throughout the day she takes sips of water from an open cup. (For her open cup, we mainly use the Reflo cup, which is also amazing!)
Josie spends 90% of the time pointing at things around the house. She wants us to tell her what the objects are called. This is her favorite game. She also points at objects when we ask her where they are. She knows lots of words and can probably point out over 30 different things.
Josie babbles but still does not say any words. However, she can sign a handful of words, including “more,” “milk,” “eat,” and “all done.” When I can tell she’s getting hungry, I’ll say, “Josie, do you want to eat?” She immediately drops whatever she’s doing and walks toward the kitchen to get some food!
Josie sleeps for about 10-11 hours at night and takes 1 nap during the day at 11:30 am or 12 pm. This nap usually lasts about 1.5 hours but sometimes stretches to 2.5 hours.
She currently has 7 teeth, 4 on top and 3 on the bottom. They are the sweetest little teeth! She hates tooth brushing though!
Over the past year her eczema has gone down significantly, to the point where it is basically completely gone. Now that the air is cold and dry again, she has a few tiny patches that have re-emerged on her legs. Other than that there have been no issues.
We didn’t do anything for New Years Eve this year. Josie was in bed by 7 pm, so we took some pictures of her in a 2020 headband earlier in the day. Hopefully next year we can have more of a celebration with her. This year she just wasn’t old enough to care!
This past Monday was 3 Kings Day and Edgar’s parents gave Josie some gifts to celebrate. She received a pink princess tent, fairy wings, Little People Noah’s Ark, some clothes and shoes, and a couple cute books. Josie had a good time in her tent and the cats were curious about it too. Even Daddy crawled inside to check it out and play with Josie’s new Little People set.
I also finally put together the toy food truck that I bought for Josie in NOVEMBER 2018 (yes, you read that right). I bought this thing while Josie was still in the NICU! I didn’t want to open it earlier because Josie already has a lot of toys. Plus, this particular one was a bit above her age level.
However, recently she’s getting a lot more interested in the world around her. I figured we could finally bust this toy out and see how it worked. It’s really adorable! Josie is still a bit too young to understand all the nuances of the different parts, but she loves to hold the play food and have me name it. She also thinks it’s hilarious to look at me through the food truck window. I have a feeling that she’s going to get a lot of use out of this toy in the upcoming months.
I haven’t done our monthly “Josie adventure” yet for January, but we are planning on going to the Central Florida Zoo very soon!
As far as Josie’s PRS goes – our only concern at the moment is her speech, as I mentioned above. She is almost 15 months old and isn’t saying any words. However, her receptive language is great as far as I can tell. She also does have a small amount of expressive language with signing. I’m not terribly concerned because she is otherwise happy and healthy. I know it will come with time and perhaps more speech therapy.
Josie’s palate has healed perfectly and she makes lots of sounds that she couldn’t make before. She also drinks out of a straw which is a HUGE deal because that means she can form suction!
We haven’t noticed any issues with swallowing or breathing. Her teeth seem to be growing in normally so far, albeit a bit crooked. She only has 7 teeth at the moment, though, so who knows!
Her ear tubes, which were put in place to help her ears drain excess fluid, are being monitored by her ENT. In May we will attend a clinical where her entire medical team (craniofacial, ENT, speech therapy, genetics, etc.) will meet with us all together to examine Josie’s progress and discuss the next steps.
But in day to day life, everything is pretty laid back nowadays. At this point it is almost hard to remember all the struggles Josie went through at the beginning. She’s really just like any other kid now.
How are you all doing? Has anything amazing happened to you yet this year? Let me know in the comments!
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3 Comments
Rosa
Hello Elizabeth,
I’m so glad I came across your blog and I am very happy that Josie had a successful surgery. My grandson was born with PRS and is due for surgery. I am curious if Josie got ear tubs put in with her cleft repair? I am not sure what state you’re in but very curious who the surgeon was. Please email me if you would like to keep this private.
Thank you Rosa
Elizabeth
Hi Rosa! Thanks so much for your comment. Josie did have ear tubes placed at the same time as her palate repair surgery (at 12 months). It was a very quick and easy procedure – it only took a few minutes. Before her ear tubes were placed, Josie had a handful of ear infections and always had fluid in her ears. The ear tubes have definitely helped. She is currently almost 20 months and has not had any ear infections since. We are located in Florida so Josie sees a craniofacial team and ENT in Orlando. I’ll shoot you an email with more information!
Elizabeth
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