How is Everly Doing?

Monday, September 22, 2014

Working on our crawling stance here

Well, I've written about this and that and figured it was time to give you a quick glimpse again at the overall picture with Everly.

Stats: She was recently at 11 pounds, 1 ounce but has since dropped to 10 pounds 14 ounces. Hoping this is temporary and she climbs right back there again soon. She's grown a bit, too. She's now 23 inches long. She just received her first of 6 or 7 Synagis shots for the yuck season to help fight upper respiratory infections. She also received the flu vaccine as did her brothers and now we (and my parents) will be getting them.

Cardio: No change since her 5 month visit. All is the same which means that her pulmonary hypertension is balanced by the hole in her heart (VSD). We go back again for our monthly check next week.

Happy 7 months birthday!

Feeding: She continues to play around with the special bottle we have for her as well as the pacifiers. She clearly does like them and responds immediately to them. However, we can't get her to suck them at all. She continues to take licks of baby food but nothing more than that. She still eats every three hours around the clock at 8, 11, 2, 5 and then repeats. Her feeds take a wee bit longer now because her volume has increased to 60 ml during the day and 55 ml at night. She also gets a quick flush of 5 ml of water after each feed.

Therapy: She has the Early Interventionist (Mary Ann) on Mondays, Physical Therapy (Gloria) on Wednesdays and starting today a Speech Therapist (Davina) on Mondays as well. Those days are light in the house and we make sure she naps well so that she is full of energy and she's not tuckered out before they even begin. I follow up with various exercises at home on the off days: tactile and visual stimulation, tummy time, head and neck control, reaching for toys, etc.

My little fashion diva!!

Progress: We've noticed a huge growth in Everly's progress. She's now starting to rub our arms and play with things next to her hands. She was wearing a tutu the other day and she just kept playing with the frill on the tutu. She is very curious and does like stimulation like walking around looking, playing with toys, listening to Baby Einstein and such. We've also noticed that she is starting to become a homebody which isn't a bad thing in this season. She's not too happy when we take her anywhere suddenly. Thankfully, while it's still hot, we don't have many places to go but periodically the doctors. Hoping once the weather is cooler for her, our walks can begin again. It's still in the 90's here which is WAY to hot for her to be out long. She is now beginning to put pressure down on her whole legs for a good minute or so. They are completely stiff leg and a bit angled but it's progress nonetheless and I couldn't be any prouder of my girl! She's readying herself for walking one day!

MISC: We've had many God stories that I'm working on writing to share. More just for my own recollection years down the line. But I will share them with you, too. The ways God shows up continue to astound me!

One of her many bathing suit photos. This is one of my favorites!

At Home: The boys are full steam ahead in school and I'm still trying to catch up. Honestly, I needed a whole week of an empty house, no responsibilities and an extra 8 hours in each day to be fully prepped for school. I vow to make this a great year and am working hard to stay ahead of the game. Burning the midnight oil and teaching the boys new responsibilities as a part of our plan for success this school year! Okay, the burning of the midnight oil isn't really a part of the plan but has since become a part of reality and it gets figured in!

Reflux: This has been really bad for a long time. For some reason, though, this last week (now 7 full days) she has not had but a small, very tiny, amount of choking episodes for which we are thankful. The only change has been that our prescription has come from a different pharmacy but I'm not sure if it has anything to do with it. Either way, we are happy and so relieved for her.

The dentist!

Dentist: The boys both had cleaning appointments last week and while there our wonderful dentist, Dr. Lesser, offered to peek in Everly's mouth to see if there were any teeth coming. Well, lo and behold, yes, there were on the top and on the bottom! Much like poor Kendan's, the teeth look about as far the Great Wall from here so we won't be preparing for teething yet. She loved Dr. Lesser rubbing her gums and couldn't have been happier to lay back in the boys' laps (they took turns) and get a gum massage. It was quite fun to watch!

Tube: Ugh! Not my favorite topic by a long shot but it's necessary. She has become a Houdini at tube removal and seems to be able to do it in a split second. We've been having lots of tube reinsertions which is concerning because we are still not wanting to do the Gtube surgery. This past Friday, her tube actually split for some odd reason and we had to reinsert. However, for some reason it didn't want to go in easily and therefore, it took us 6 attempts! It was the most awful day ever. Two times it hit resistance, one time it went into her lungs, another time out her mouth, another time it hit resistance again and then on #6 it went in correctly. That was as hard for us, I think, as it was for her.

Birthday: Everly celebrated her 7 month birthday quietly at home with family with movie, pizza and cake. She slept during the celebration actually. True story.

I think that about covers most of the updates since my last one with just all the stats on her and how she's doing. Please continue to check in on Facebook for quick every day updates and pictures frequently. It's a public page so feel free to invite people to her website and to her Facebook page.

Prayer Requests: Now we are approaching the cold and flu season, plus there's now the new strain of Enterovirus to be concerned with as well. I am asking for prayers for her good health and to stay protected (and our family) from the yuck that is out there. It can be deadly for her should she catch it. Please pray for other Trisomy babies and children as well to stay healthy and free from sickness. Thank you!

With love and appreciation,


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