Boy does time fly! I was talking with a friend tonight that I don't talk to very often and she said, "I try to stay up on Lexi's blog." Blog.....blog....OH yes! Lexi has a blog! So sorry to all of you that read this to follow up on our sweet little girl. I have a new phone and am putting in it to update her blog at the beginning of every month. It's a great way to look back when things are so hectic too!
Lexi's update:
Right now, Lexi is actually really sick. She had been doing REALLY well since her last rotovirus stay in the hospital at the end of October. Lexi has bronchitis and an inner ear infection. Unfortunately, when she gets respiratory infections, her pulse-ox (which should be between 98-100) drops really low. Yesterday it was running around 85. She has been to the doctor and we are doing round-the-clock breathing treatments, antibiotics and lots of fluids in a hope to keep her OUT of the hospital! We are hoping she wakes up a new little girl tomorrow- she has a lot of people praying for her!
Other updates:
Lexi started at Blanchard Valley Pre-school the 2nd week of November. She only goes Tuesdays and Thursdays because that's all mommy can handle her being gone! Plus, with all her appointments, it's all I can do to get her there 2 days! We learned at our parent-teacher conference 2 weeks ago that she has missed almost as many days as she has gone, but I'm not sure the school understands that Lexi has development AND medical delays. She is slowly adjusting and has finally stopped screaming and clinging to me when I drop her off- Thank the Lord! It was hard to leave her!! I think pre-school will be good for her if we can keep her more healthy!
PT: Lexi is crawling up and down stairs now- not sure if that's good or not! She is still very wobbly when she walks and this is a big concern for her therapists. We are trying to get her a compression vest to give her more stability when she walks but, of course, insurance denied it. I'm working on some grants to try to get this AND a therapy swing covered for her.
OT: Lexi finally knows what a crayon is! She is starting to make a few scribbles on paper even! This is very exciting! She doesn't always get the point down, but we'll take it! She is also into the "Dump and fill" stage....unfortunately, she only DUMPS right now- we need to work on the "filling" part! Jon alphabetizes our DVDs and Lexi LOVES to pull EVERY DVD right off the shelf. It drives Jon absolutely crazy and I think it's hilarious!
Speech/Feeding: Lexi is making HUGE gains in speech. She is probably using at least 30 words completely on her own WITH purpose! Unfortunately, she's still not able to use any sounds that involve lip closure- "m, b,p,v,f, " are all trouble sounds for her and that's a lot of our language. But, she is assimilating other sounds consistently- she says "dady" for baby and "nana" for mama. I understand her pretty well but others really struggle with understanding her. This is definitely becoming a big area of concern for us.
Lexi is still on a feeding tube all night but times like this when she is refusing to eat, we are actually thankful she still has a tube! We are making a trip to the feeding clinic on March 9th and are hoping for some good news about weight gain. At the Dr today she was 28 pounds- such a tiny peanut for 3 1/2!! But, she's tall and thin- perhaps she'll be a model! :-)
Prayers:
Please pray that we are able to find a way to get her therapy swing and compression vest covered as we are simply out of any other sources to pay for it!
Pray for Lexi's speech. Her facial nerve damage comes into play significantly and it is frustrating for everyone involved- especially lexi when no one understands what she wants/needs
Pray for our upcoming trip March 9th to Cleveland. We are actually going to Cleveland Clinic twice in March, Columbus Children's once, hospital pediatrician once and follow-up with regular pediatrician. We'll be back to our 5-6 appts a week in March and I'm really not looking forward to it. Pray for strength, answers from Drs and patience for Lexi!
Thank you all for your continued support of us and Lexi in this marathon!!
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