I have been wanting to do an update on Ailyn for a very long time. This summer has been very busy for us. And, well....as you will hear, Ailyn is a very difficult child ;) Where do I even start??
I will start with her good news :) Ailyn is a very happy kid. Always in a great mood. She wants to be where the action is. Still very social and trying very hard to communicate with us. She loves animals and will hug them to death if she could. Her big brother is the funniest person in the world. Her Daddy is one of her favorite people. She loves her Mommy most since she knows all her signs and cries.
Ailyn LOVES her baby dolls. She has quads....4 tiny babies, just like her. She will crawl around with all 4 of them. She loves to wrap them up in blankets over and over.
But, Ailyn is a 2 year old.... and she is taking terrible 2's to another level. She doesn't have tantrums thank goodness because if so, I am not sure I would make it through the days. Ailyn is very physical. She is a strong kid! She will hit, pinch, bite, scratch or do anything that will get your attention. She will whip your glasses off your face so quick. I can not explain how very fast she is. You do not see the abuse coming. This is ALL day long. We are hoping this is happening because she has very few words and signs. She struggles with communication.
After our long trip "home" I decided Ailyn needs more help than just "time out" or the usual 2 year old "punishments". Our service coordinator put in a request for a behavioral psychologist to come out for an evaluation. This won't happen right away. So her WONDERFUL AWESOME weekly teacher through Infant and Toddlers is coming an extra visit a week to work on behavior. It's only been two weeks but I can see a small change, very small. I am ready for a bigger change because this makes our days very long and very stressful.
Ailyn's gross motor is still very much delayed. She is not walking yet. If she doesn't realize you let go of her, she can stand on her own very well. She has no desire to walk with a walker or a push toy. We do make her walk with holding our hands. Her balance is way off. She struggles to pull herself up. We believe that it has a lot to do with her eye sight. Her eye doctor swears this is not the case (more on that later....) Climbing is getting easier for her. She is very strong, so I am sure once she figures it out, she will be running in no time. I look forward to her appointment with her developmental pediatrician on Monday.
Ailyn has therapy 5 days a week now! We are very busy with therapy and doctor appointments. She receives OT, PT, a teacher, vision, and a weekly playgroup through Infant and Toddlers. She will get speech starting in September/October.
We got bad news from the feeding clinic two weeks ago. Ailyn was supposed to start last week. The feeding clinic was an inpatient clinic at a local pediatric hospital. The program was everyday from 8am- 4pm for 6 weeks. Unfortunately, our insurance was not going to cover $17,000. So sadly we choose not to do the feeding clinic. Mainly because her GI doctor wasn't too concerned that she couldn't do the clinic. She says Ailyn will eat on her own time. Not sure how much we believe that but for now we have no choice.
Ailyn's AMAZING OT is going to work strictly on feeding once a week. And, I have to work on getting her to take at least 6-8 bites per meal.....not very easy. BUT, she is doing a lot better than she was a few months ago. She isn't gagging as much when she swallows. So there is hope she can do it on her own.
Her teacher also thinks she has some sensory processing issues as well. Her "gentle" touch is not very gentle. She loves to "squish" things in her hands. She can sit and "squish" a paper towel for a 1/2 hour. It's her security. Her teacher gave her a chewy tube and that has been great. She loves to chew on it. So whenever she bites us, we give that to her. We switched her toothbrush to an electric one and that has been great for her! She loves to brush her teeth now. She loves to hold the brush for a long time after. We are trying to supply her with sensory toys around the house to fulfill that need.
I was very excited to finally get a vision therapist come out to the house for an evaluation. She's great! Ailyn qualifies for 3 sessions a month. We are hoping she will help us with patching. Her eye doctor just increased her patch wearing to 3 hours a day. We are VERY lucky if we can get her to wear it for 2 minutes a day. The therapist also said she thinks we need to get a second opinion. Something we have wanted to do for a awhile now. We just needed that push. I was able to an appointment with a very good eye doctor for Monday, August 29th. The therapist is coming with us! I look forward to seeing what this doctor has to say.
Ailyn CAN see. She is a little bit far sighted which is normal for a child her age. Her eye still crosses, and her other eye will also cross at times. She can look strait at you. We believe she may see double. She rubs her eyes, and will blink often.
Ailyn is doing great gaining weight, thanks to the feeding tube! She gets fed 10 hours a night. She is able to drink 16 ounces of
Pediasure per day on her own by bottle. She hasn't been weighed in a few weeks but if I had to guess I would say she is close to 23 pounds.
But, BOY she HATES that tube! She will try to pull it out daily. And, we have to make sure she is sound asleep before we start her night feed. And, if she wakes up at night (which she does) she will pull out the tube.....and if I don't notice right away..... the bed gets fed..... and we get very wet. It's not very fun changing sheets at 3am.
Sleep..... comes hard for Ailyn. She can fall asleep very well. She loves to sleep. But, she is having a very hard time with waking and getting back to sleep. She wakes at 3am and will toss and turn for hours. If she sees light outside, forget it, she is up for the day. Ailyn has a very active brain.... always moving, I think that is a reason this is happening. I plan to bring it up Monday with her Dev. Ped.
So there you have it. Our life right now in a nut shell. If you talked to me about it a few weeks ago, I was ready to jump off a bridge or commit myself. Ailyn is a very challenging child. We have to be on top of her every second. She finds trouble everywhere she goes. She can be contained in her car seat and find something to get into to! I keep in mind that this stubbornness is why she is here with us today. I think I have finally (or on my way too....) accepting that this is what we were dealt. We can handle it. We have been through a hell of a lot worse! I am ready for this challenge.
THANK YOU for ALL my awesome friends out there who keep me sane! And, my new friends who "get it". I honestly couldn't do it without your support!
