This summer has been full of good and bad for us. Some overwhelming and some amazing!
I'll start with some good....or so we hope! We spent a week in Cape May, NJ a couple weeks ago. Ailyn and I were in the bedroom getting ready for the day. I happen to look on the floor and what do I see?? Ailyn's feeding tube!! I had another, quickly opened the box and tried to get the new one, and one back in. There was no way. I have no clue how long the tube had been out. I changed her diaper a hour before.
The gtube at this point would have to be surgically put back in. I was told the hole closes very fast, it sure does! Ailyn eats 3 small meals a day and drinks up to 24-30 ounces of Pediasure. I was already starting to wean her feedings down. I called the GI and we agreed she was OK until we got home.
Since then, the GI and I have decided to KEEP THE TUBE OUT!!! Ailyn is ready. I might be ready.
Ailyn has had more word explosions! "mine", "that", "go,go" (is a car), "off", "O" (Obie, the dog) and "pool"
The bad news? It's bad. And, very scary. Ailyn is having seizures. I have a couple on video for her neurologist. She had an EEG last week. But, that was a joke. Ailyn doesn't stay still in her sleep, no clue how they think she was going to lay there for 30 minutes.
She started getting these body spasms about 3 months ago. She finds somewhere comfortable, then her whole body tenses up, she drools a little. Very normal for someone with Cerebral Palsy. If they get to the point where she is uncomfortable, she can starts a medication to help relieve the muscle pain.
Then about 4 weeks ago she started rolling her eyes in the back of her head while she has a spasm. She snaps out of it right away. We have an appointment very soon. Please say some prayers for A.
We are starting to say goodbye to her Infant and Toddler therapists. Some of been with Ailyn since she was 3 months and 4 pounds!! They have watched her amazing progress over 3 years. Have been her best friends 4 times a week. I am not ready for this change!
Ailyn will be starting school soon. Her first IEP meeting is next week. I am only going to agree to 3 days a week. I have MANY anxieties about her starting school.
WANT the BEST news??? Ailyn has been taking 10-20 steady independent steps!!!!!!!! Crawling is still her preferred method. It's easier and faster..... of course we are trying hard to change her mind.
She tolerates her braces better now. I don't get 6 hours yet, but she doesn't cry the entire time they are on. She is so much steadier with them on and I wish she would just stop being stubborn (Ok, no I don't) and wear them! She takes steps without them just as good too.
Ailyn's ears have been a HUGE issue ALL summer. I think we only had 2 weeks off of an infection. We clear up one ear, then it moves to the other. I put drops in everyday. The last day on vacation, she was screaming, clawing at her one ear, making the outside bleed. We are assuming that tube fell out. The doctor wasn't able to see either tubes because they were all infected. I wasn't too concerned because Ailyn was to have surgery on Tuesday, August 7th to check her tubes and take her tonsils out.........
BUT!!! Of course, she woke the day before with a fever and a bad cough. Thank goodness we were able to reschedule for Monday August 13th. She will stay overnight. Please say prayers!!
Despite the bad news, we are having a great summer. Trying to get out as much as we can on weekends. Our week at the beach was AMAZING! Very relaxing. Look for pics soon!
