Cue Sigh of Hope

That’s my new phrase for when we get good news. We don’t really do relief around here since we’ve had so much good news taken back again, but we do appreciate when HOPE is given.

We met yesterday with an Infectious Disease doctor to discuss Evie’s latest bloodwork and he was very optimistic. She does have a mild immunodeficiency, but he doesn’t think it puts her at any severe risk! If she gets a virus, her body should be able to handle it, though it may affect her worse than a typical child and take longer for her to get over (which is what we’ve already seen with her).  As she gets bigger and stronger, it should become less and less of an issue.

Obviously, the trach complicates issues.  The trach is a 2 edged sword. On the one hand, it gives her a stable airway and keeps her safe. On the other hand, it makes her more susceptible to illness and if she gets a plug, we’re in an emergency situation.  A good analogy of life with a trach may be putting a marble in your infant’s mouth. She’s fine as long as she keeps that marble in her mouth. She may not be in any danger right now, but that doesn’t really mean you can walk away or relax.  We live on high alert.

Since Evie is so tiny as well, we will still need to treat her as an infant in terms of protection. The big reason infants are at risk is because their airways are so small. Evie’s slightly more than double the weight she was when she first came home from the NICU at 2 months old, so still a peanut. Most kids triple their birth weight by one year, but Evie’s nowhere close to triple and she’s 19 months!

In other good news from yesterday, we met with the developmental specialist who has been following Evie since she came home and we heard some great things. Evie is pretty much on track in her fine motor skills and social development. Communication wise she has the appropriate amount of signs to correspond with the number of words you would hope to see, as well. Her gross motor skills are really where we’re seeing the gap widening, but that was no surprise to us. Due to her balance issues and low muscle tone, it will take her awhile to achieve some of those milestones (especially if she keeps losing weight like she does!). The specialist recommended that we start following with a developmental pediatrician that deals with more complex kids (yay, another specialist. sigh) just to make sure all her therapy needs are attended to. With so much going on medically, we don’t want to miss anything on the development side of things!

And for those that aren’t on facebook: Evie did her first two word phrase on Friday! She signed “Please Go” to Daddy to tell him to walk around with her! She also has been enjoying playing with food and trying new flavors. She had A LOT of fun with some chocolate the other day! We’re not sure how much she can taste since her sense of smell is majorly blunted by her trach and blocked nose, but it’s encouraging that she’s seeking out food to try! Huge step towards someday eating by mouth.

Please continue to pray for Evie as her body still recovers from being sick. She is still vomiting quite a bit and continuing to lose weight. She has lost about 1.5 pounds, but hopefully soon we will be able to go back up in her feeds. Her ears still have quite a bit of drainage as well, so hearing aids are not an option. Hopefully we won’t go straight into another illness, especially before she’s regained the weight she lost.

Grandma and Grandpa came to visit!
Grandma and Grandpa came to visit!
A new ornament for the tree! A silver painted trach!
A new ornament for the tree! A silver painted trach!

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