Our Little Piggy Bank- October 2

It's hard to believe it's been 2 months since I last posted about Lexi Mae! The twins started pre-school a few weeks ago and I was convinced that THIS would be the thing I needed to allow my life to slow down a bit....or not (sigh). Here's the latest updates on Lexi!

Why the post "Our Little Piggy Bank?" If you haven't heard, a few weeks ago, Lexi started vomiting and eventual started to refuse to eat all together. After about a week of this, we got very worried. Unfortunately, when you have a child with multiple medical issues, you don't know exactly which doctor to turn to first! We called her GI doctor who said to talk to the feeding clinic, the feeding clinic said to talk to ENT and ENT said to talk to Neurology. FRUSTRATION! Finally, our neurologist at Cleveland Clinic, Dr. Friedman, took note! We are so thankful for him! He admitted Lexi to Cleveland Clinic because he was concerned that her chiari was having issues. After a whirlwind of being admitted, getting IVs started and a plethora of questions, one of the doctors said it sounded like she has swallowed something. So, off to X-ray we went (at 3am!!). Sure enough- a round, metal object lodged in Lexi's esophagus! So, first thing the next morning, the GI team came up to access her. Their main concern was that the object was next to her aorta and if it would tear through the esophagus, this would become a very serious situation. So, they scheduled Lexi for emergency surgery to remove the object. We were amazed at how quickly they moved! Within 20 minutes of talking to the GI doctor and signing all the forms, Lexi was down in pre-op! Turns out she swallowed a nickel. And yes, that actually gave us our money back :-)

However, last week, Lexi started having some similar symptoms so we took her to our local ER. Believe it or not, she swallowed another coin!! This one, however, is in her intestines and the doctors can't reach it. So, we are hoping she'll pass it on her own- otherwise (Dare I say it??)- it's back to Cleveland Clinic for more surgery! The doctors said we should find the little diaper surprise within a day or so....that was 5 days ago so a phone call will be made to Cleveland Clinic GI tomorrow.

In other news:
Feeding Clinic- after Lexi's last episode of nickel eating, she is down 9 ounces...not good! The clinic is hoping she will re-gain the weight so we don't have to put her back on more tube feeds during the day. They are also having us do some oral stretches on Lexi's mouth and cheeks to try to encourage nerve reintervation in her face.

ENT- Lexi is scheduled for a swallow study on October 18th. We are praying that she can be given the "all clear" to try thin liquids without aspirating!

Allergy- the best news is that Lexi passed a 4 1/2 hour food challenge for egg. She no longer has ANY food allergies which is a huge blessing! We're hoping being able to add egg into her diet will help with weight gain!

Development- Lexi has become a little parrot. She sings ALL the time and knows ALL the words to songs. You can't always understand her since she can't say "M," "B" or "P" due to her facial nerve damage but she is so cute! She mimics everything we say! She is not using a lot of words on her own, but we are really focusing on comprehension with her. She is continuing to work on walking with new foot braces and is becoming stronger every month.

Please pray:
That this nickel passes through Lexi's system without any more surgery needed! This little one has been through enough!

Lexi has a big transition meeting on October 19th. At this meeting, we focus on transitioning her out of Help Me Grow and into the school system (which seems crazy to me!). We are struggling with what to do with Lexi. We can move her to Blanchard Valley Preschool or we can keep her home and have a preschool teacher come to our house 1 hour a week. This is a big decision and we don't know which direction to go with Lexi. I'm just not sure I"m ready to send my little princess off to preschool quite yet! Please pray we make the best decision for Lexi!

Finally, pray for Lexi's upcoming swallow study on October 18th. Lexi has had 7 swallow studies in the past 2 1/2 years and has yet to "pass" one. This would be a HUGE blessing for her to pass the test!

As always, thank you for your prayers. We'll be posting some new pictures soon!