On April 13th, we became a family of four after the addition of Evan Austin Layne. I am going to "borrow" a concept from my sister-in-law and do a family update through this blog entry.
Evan Austin Layne
2 Months Old (10 weeks)
Evan is such a sweet baby! He smiles, coos, and laughs which just melts my heart. He is one adorable little boy. He does not like baths though, nor his diaper changed. He much prefers to be cuddled and held in a warm blanket. He does have a quick temper, and I have a feeling he is a child that will crave constant stimulation. He is totally mesmerized by the mobile in his crib, yet he doesn't like to sleep in his crib or cradle. He much prefers the napper in his play yard. We are hoping he will grow out of that in the next couple months. We are also hoping he grows out of being a Colicky baby. He is now taking Prevacid twice a day. It seems to be helping, yet there are still times when he is inconsolable. Nothing seems to pacify him during these times of crying and screaming. As his mom, I feel so bad for him. Usually colic disappears by month 4 or 5. We are hoping it resolves itself quickly! In the last few days, Evan has started to drool and has been trying to get his whole fist in his mouth. He has two little white tooth buds on the bottom of his mouth. I can not believe he can have teeth at 3 months old. We definitely have an early teether.
Mackenna Sarah Fay
3 1/2 Years Old
Her favorite toy is her iPod and she can manipulate it and do things with it I can only dream about. She is very technically savvy with just about everything. She loves to fingerpaint, although it is a very messy activity. :) She also enjoys stamping with any stamp and stamping pad ink she can get her hands on. I have turned my child into a Scooby Doo lover! This is her new favorite cartoon, and of course Mommy doesn't mind that (I loved Scooby Doo as a kid too). I think her favorite person in the whole world is her PaPa Ron. She is definitely PaPa Ron's girl. She loves spending time with her PaPa Ron and Grandma Fay. She also loved spending time with Grandpa Larry and Grandma Colleen when they visited in April. She only gets to see them a couple times a year, and it was so great for her to have so much time with them during that week. Mackenna is adjusting to being a big sister. At first, I don't think she was too thrilled with the idea. Now she helps Evan play with his toys and his tummy mat. She tickles his toes, rubs his head, and always checks on him when he is in the car seat. When he cries out in pain, she also gives an empathetic cry. I can not wait to see how their relationship grows as they get older! :)
Mackenna was really progressing in her speech a few months ago. Her vocabulary had seemed to pick up, and she was saying 10-15 words and phrases a day. For a child with her speech delay, it was great to see her increasing her vocabulary. Then her little brother came along, and she has regressed a bit. Her speech therapist, Shelly, reassured me that was perfectly normal. In the last week though, her vocabulary is picking up again. I told Shelly a couple weeks ago there are nights I don't know if she is ever going to talk. Shelly told me its all there, it's just getting Mackenna to talk consistently. When her Grandma Colleen was here in April, she was helping her in the bath tub. Mackenna looked at her and said, "I like baths." A couple weeks ago she was telling Grandma Fay about her "bellybutton." Over the past year Mackenna has said hundreds of new words and phrases, yet she is just not consistent with those words. Her language is always appropriate though, albeit sporadic. It is definitely not echolalic, which would mean she repeats what others say. She also understands everything that is said to her. She is so bright that some people have suggested she really could talk all the time; she's just learned how not talking works to her advantage. She has been telling Evan to "stop" when he is crying, as he seems to do it a lot with the Colic. If you are reading this, please say a prayer for her. Her lack of speech does inhibit her in other areas, especially socially.
For the past few months, John and I have been on an emotional rollercoaster. On Valentine's Day, we took Mackenna to the Thompson Center in Columbia, MO. They specialize in working with children who have Autism. Due to her speech delay, we asked our pediatrician for a referral so we could find out if Mackenna has Apraxia, a Pervasive Disorder, etc. Our pediatrician was thinking Mackenna could have high functioning Aspergers or another disorder connected to her lack of speech. He did not think she had Autism. At the Thompson Center, a doctor and therapists evaluated Mackenna for one hour using an instrument called the CARS Scale. A cut off of 30 determines Autism, and Mackenna scored a 32. The doctor came into the room, told us our "kiddo" had Autism, told us people (although not specifically who) would be calling us, and gave us a booklet. She did not directly answer questions we had, and we did not find her to be helpful at all. This one hour evaluation was very subjective. At times it almost felt as if the evaluators thought we were lying. "Yes Mackenna has been wearing jeans since she was 2 months old." "No Mackenna does not throw temper tantrums." "No Mackenna has never had a seizure." "Mackenna is a great traveler. She travels up to 14 hours at a time when we visit family in Texas." "Mackenna is very affectionate and loves to be held." "Mackenna is very adaptable. She doesn't need a routine." Answers such as these got a raised eyebrow or an "Oh" response. Mackenna does not exhibit symptoms of Autism that some children may, yet every child is different. Yes, she does have a speech delay. Yes, she walks on her toes. And yes, she flaps her hands when she is excited. We were just really not expecting the result we got that day. We felt totally thrown for a loop. For a while I really fixated on the two points. If she had scored a 30, would life be different for us? Yet, those two points have opened avenues for her we did not even know existed. Those two points helped us get her in Pre-K and to get a service worker through the Regional Center. As a result, we are now seeing a worker from Touchpoint Services out of Columbia.
Touchpoint evaluated her in May during another one hour test. That evaluation found her to have a Pervasive Disorder-NOS (Not Otherwise Specified). Mackenna did not score high enough on their scoring system to have a diagnosis of Autism. Although both tests are subjective, this is what John and I had been thinking she had, rather than Autism. In April, our pediatrician told us he was still not convinced she had Autism, after that first initial evaluation. He still thought it was a form of a Pervasive Disorder. He also said she could just be a "quirky" kid with a speech delay. No matter the diagnosis or label, we are going to do whatever we can to get her what she needs. Touchpoint is going to be offering us some in-home training, both for John and I and for Mackenna. While our situation may seem insermountable at times, we know God does not give us more than we can handle. He gives us gentle reminders that our situation could be much worse. We are certainly blessed with the little girl we have! Even though it sounds like denial (and it really is not), we plan to do everything in our power to help Mackenna overcome these obstacles and these diagnoses. We know that it may be difficult, but it's not impossible. There are many children who have gotten diagnoses this young who go on to not test for it as they get older. We know that may not happen for Mac, but we are sure going to do everything we can to give her that opportunity.
No comments:
Post a Comment