Monday, January 28, 2013

Stuck Inside

We had some icky weather this past weekend that kept us all stuck indoors. Little boys and cabin fever do not mix well. No activity outside of good old fashioned rough housing kept E occupied for more than about 20 minutes at a time, but here are a few of our weekend adventures:

Introduction to Safety Scissors

Automotive Drip Pan turned into a Magnet/Dry Erase Board

Popsicle Stick Road Rally 
(later became a painter's tape track since E got frustrated with the sticks not staying put)

Cornstarch Bath Tub Paint (aka colorful bath water)

We also made banana pudding since E really loves helping me mix up the ingredients. So, what are your kid's favorite "cabin fever" activities? What keeps them occupied for the longest amount of time? As I mentioned before, E's favorite game by far is wrestling with me or his Dad. I have so many obscure bruises to show for this. Unfortunately, we wear out long before he does!

Wednesday, January 23, 2013

Tests, IEPs and Appointments...Oh My!

Not long ago, we took E for his language testing that would be used for his first IEP (individual education profile) with the school system. At age three, he transitions out of the "Beginnings" program and starts to work with the school system for his therapy. The test did not go very well.

 First off, the language therapist was not pleased that we had chosen to continue signing with E after implantation. I explained that our goal for him was to become fully bilingual and that we felt his signing really helped his language because we could input correct pronunciation of words when we understood what he was attempting to say with the support of his signing. She clearly was not pleased with our choice to go against her advice to drop signing. Secondly, she allowed an intern to perform the test. I understand that interns need to learn and practice, but this intern clearly was not well versed yet in giving the test and I would have preferred she practice on an older child. The testing took two hours...that's two-year-old was expected to focus for two solid hours. We asked for a small break for him after the first hour. I think breaks should have been built in for his age group rather than having to be requested. Nothing E signed counts at all for this test, so if he was asked a question verbally, comprehended it, but answered in sign, it doesn't count. For example, he was asked to name the picture of the elephant. He said, "ele el," signed ELEPHANT, made the elephant's trumpeting sound, then signed "E-L-E-P." That's right! He tried to SPELL it!! On the test though, it looks as if he failed the task since only "ele el" was vocalized.

After two hours of testing, he then went to a sound booth for more testing. My attention span was struggling, so I am certain his was pretty much gone at this point. They chose this day to change up the way E identified sound. That's great that they want to move to the next level, but I'm not certain we got the most accurate info this way. Everything we had heard until this point had been so positive concerning E's progress. Suddenly, not so much. The cochlear team told us that they were concerned that his hearing aid was not contributing well and that his speech was not coming along as they would like. They said it was time to think about whether or not we were interested in a second implant. My husband and I both had the knee-jerk reaction of, "no." We decided we really wanted to see what his pediatric audiologist thought at his next appointment.

Last week, we had our one year follow up with our surgeon and with the pediatric audiologist. The audiologist confirmed that E's hearing aid was benefiting him. E was able to follow verbal directions while listening with only his hearing aid. She understood our concern and resistance to a second implant and said she wanted to see what the surgeon's opinion was. Well, we didn't get to see the surgeon. When it came time for our appointment, we were told we weren't on the schedule! Yup...this is the SECOND time his scheduling staff has done this (first time was his surgery date!). I'm just glad we had piggy backed appointments because it would have been terrible to take off work and drive all that way only to be told we could not be seen! We searched for our confirmation card at home, but found that we had already tossed it. I was really looking forward to scanning it in and emailing it. We have really had some awful luck with hospital administration throughout this journey.

We were able to see the language therapists written report after the language test. E made and 84 on the test. They wanted an 85 for "average" and this test is based on chronological age and not hearing age. So tell me, why did they act like he failed??! The therapists notes insulted my husband and myself as parents saying that we had not done our due diligence with E's therapy. It went on to insult our therapist by saying that she recommended an experienced speech and language therapist. WHAT?! He meets with a therapist every Thursday in our home and he has a second therapist that observes him and works with him at preschool. I was extremely angry and offended. I am still trying to determine my course of action, but I believe I will likely be asking to have this particular woman removed from E's case. She is obviously in opposition to our choice to be a total communication family and continue both verbal and signed communication, so I feel we need a therapist that is more open to our goals for E anyway. I am confused by the suggestion of a second implant and frustrated that we were cruising along so far with nothing but praise and then BAM! We are told things are not going as well as could be. My gut instinct tells me that it is time to push back.

Change of subject...

• We are now having a bit of success with #2 potty training! So far, he will only go for me, but it's a start!
• E's list of words that he now "reads" has continued to grow significantly.
• E has discovered honey buns and thinks they are the best thing ever. They have ZERO nutritional value for him, so it's no surprise to me that he loves them :-( The good thing is that I have been able to use them as a reward for #2 potty success. They are a very rare and special treat.
• Every night, I smell E's PJ pants if he wore them the night before to make sure there was no pull-up leaks. I can tell instantly if they are not good and clean and we need to toss them in the laundry. E has observed this one too many times I guess because he has started sniffing his clothes before putting them on!
• One of the most common phrases uttered in our house right now is, "STOP chasing the CAT!"

Monday, January 7, 2013

E's First Trip to the ER

We have had quite a bit going on lately. E had a great Christmas and was completely spoiled by his grandparents and aunts. E's big gift from Santa was a new play room! We turned the guest area down stairs into a play room by building a new wall along the stairs and recarpeting everything. The guest bed has now been moved upstairs into the office. E is very excited to have his own space to play and tumble and we are very excited to reclaim our living room.

 We still have some decorating to do, but here is the play room so far. You can see E sitting in the blue bean bag chair in the middle of the pic.

 One of E's Christmas presents from my parents was a bubble machine. E loved having hundreds of bubbles rain down on him. He also is now the proud owner of every play doh tool known to man!

My husband left the morning of New Year's Day to go to the 2013 Passion conference with the college students. He was gone until late Friday night. I went to the nanny's house after work to pick up E. She very kindly offered to send us home with dinner and so I was assisting her with packaging some food. E took this window of opportunity to stand on the couch (which he KNOWS he is not allowed to do) and ended up falling backward. I heard the thump and the cry and rushed to scoop him off the floor. I was cuddling him in my lap and calming him when our nanny informed me that he was bleeding. I pulled my hand away from his head to see it covered in blood. I thought he had just fallen onto the floor, but he had clipped the edge of the coffee table. We put pressure on the cut and packed in the car for a trip to the ER. Other than a cut on his head, E did not seem to have any problems. He was eerily calm, but did excellent through the entire process. He even allowed them to papoose and suture him without much fuss. He was probably a better patient than I would have been! The doc observed him as he played games on my phone and interacted and said that he did not seem to have any effect other than a very mild concussion at worst. Three stitches, later, we were headed home. My husband was still on the road coming back from Atlanta when I called to tell him the news. By the time we arrived home, well past E's bedtime, Daddy was there to meet us with the Mickey Mouse he had purchased for E while on his trip.

E loves his new Mickey and we will certainly never forget the day Mickey arrived at our house!

 I moved the futon cushion into the play room, but have yet to move the frame. E seems to like the big cushion on the floor so much, that I'm not sure we will change it. He was very happy to have Daddy back home as you can see. We found Sesame Street "Alphabet Jungle" in the discount bin at WalMart and it has been pretty much on repeat all weekend. E's stitches are on the left side of his head toward the back. Yes, this is the same side as his cochlear implant. We were really concerned about that, but the cut is about an inch above the implant, so everything was fine.

Oh, I forgot to mention that E had gone that same day to the pediatrician for a cold and ear infections. Two doctor's visits in one day! I was feeling like an especially awful parent. Add to that the fact that E decided to take his first roll out of his toddler bed Saturday night. I was relaxing and watching TV when I heard BLAM! AHHHHHHHHH! I found that I can really move quickly! I raced into E's room and flipped on the light to find him sitting on the floor beside his bed with a very confused look on his face. I cradled him and he told me to turn the light off. He then climbed back into his bed and went right back to sleep. The toddler bed is not far from the ground at all and it has a railing, but the railing does not cover the entire length of the bed. We took E's old changing pad and placed it on the floor beside the bed. Any future tumbles will land on plenty of cushion.

Speaking of changing pad...E is now #1 potty trained!! We have yet to have potty success with #2, but he is out of diapers except for pullups during nap and night. He looks and acts less and less like my little baby every day. He is growing up so very fast.'s been quite chaotic around our house lately!