Thursday, April 25, 2013

A peak into our sensory world

Connor finally got his OT (occupational therapist) evaluation- this was his 3rd one! Every other time he had the evaluation he was doing fairly well and didn't qualify for OT, but since he has gotten older he has shown alot more sensory issues.

The OT is absolutely AMAZING with Connor! The first visit Connor had warmed up to him and was actually sitting in his lap at one point! That is huge considering it usually takes him a while to get comfortable with new therapists. After the evaluation, Connor scored at the 13 month old level (tough reading that!) and definitely qualified for OT. He also shows signs of Sensory Processing Disorder. Last Thursday was his actual first therapy session. His OT has started Connor on a sensory diet. Let me explain real quick what that means : a sensory diet is a specialized plan that involves specific sensory activities daily.

 Here is what his diet consists of :
Body brushing every 2 hours while awake
Joint compressions after each brushing
Swinging forward, sideways, and a little in a circle
Bouncing, rolling, and jumping on exercise ball

 Ok, ok...I know sounds a little odd but it has done some impressive things within the first full week! Connor has been talking up a storm! New words we heard this past week are : "I got it!", " Peek a boo!", " Shoe", "mouth", "more" and he does the sign more at the same time, " up", "outside", "tree", "toes"...there are more I just can't think of all of them right now. Regardless, that is a huge improvement from the few words he would say!! He is starting to focus longer and better with certain activites, so I hope that improves! That makes it much easier to try to teach him things :) Happy   Momma right here!


 The Wilbarger Protocol is the brushing and compressions ( as I call it, "Brush & Squishies!") that we are doing. It is a deep pressure technique that is used in kids with sensory defensiveness. The purpose is to help "normalize" their sensory processing so that they can function better in their environment. Here is photo of the brush that we use:
                      


So Connor seeks out sensory input ( proprioceptive dysfunction) hence why he is always so active, craves movement and tippy toe walks. He has vestibular (a system that provides input for movement, balance, spatial awareness and positioning) dysfunction. We are trying to help with this by swinging- which he absolutely LOVES now! 2 months ago I am sure our neighbors thought I was torturing him in the swing, he would scream within 1 minute of being there. Now it is an amazing calm thing for him! He actually fell asleep in the swing- I never imagined that would happen!

 The swing is set on 1 hook so we can go forward, sideways, and in a circle:
                                    

  
He also has tactile dysfunction: meaning he doesn't do well with certain textures. For instance, if he falls down in the yard he tries to figure out how to get up without having to put his hands in the grass. He will quickly touch the grass to get up, then immediately brushes his hands off. He won't touch pool noodles,sand, or scratchy things. But he will constantly rub really soft fabrics. I am making a sensory box for him, full of dollar store finds so we can work on this! :)

All the goodies that are going in the box: rice, noodles, beans ( all of which I dyed to give it a better visual appeal), Legos, sponges, pot scrubbers, pipe cleaners, rubber animals, silly putty eggs, bells, foam letters, cars, and shovels. Basically a hodge podge bucket full of different textures to play in!
My next project is to figure out how to sew him a weighted blanket to help calm him when it is time to sleep. Right now it takes him forever to wind down and finally fall asleep.

Today he did great with OT! He was very focused and almost looked like he was so chilled out that he was ready for a nap at 10:30 this morning! I am hoping that all this sensory input and the sensory diet continues to help him, not to mention help keep Mommy & Daddy sane since it calms him down a little.

2nd Birthday, Sesame Street Style!

Happy 2nd Birthday to our little man!!He had his party at the little gym, it was super easy for me! All I had to bring was food & the cake and the rest was taken care of! I am glad we decided to do it away from home because I am not sure what we would have done with all the kids because it was chilly and cloudy outside. It is so hard to believe Connor is 2! It sure has been a bumpy road with a lot of highs and lows but he continues to smile and be our strong little fighter that he has always been! Here are some photos from the party! Connor is obsessed with Elmo and throughly enjoys Sesame Street- hence why I went with this theme...not to mention the primary colors of the little gym matched perfectly!
 The Birthday Boy!
Setting the tables up
Elmo cake ( made by me!) and Connor's little cupcake (gluten and milk free)
Oscar the Grouch Dirt cups (so easy: chocolate pudding, whip cream, oreos & sour gummy worms)
Cookie Monster's Cookies (made by Heather McCants)
Dorothy's Goldfish
Birthday Balloon wreath (made my me)
Make a wish sweet boy!
Our little family
These favors were made by me as well. Since Elmo's goldfish is his favorite, I decided this was perfect. I really wanted to do real goldfish but the hubby vetoed that idea! So I melted glycerin soap, put a toy goldfish in the soap, and then waited for the soap to harden back up. I forgot to get a photo of the tag but it said, " Elmo loves his goldfish & crayons too, now so can you! love, Connor"
Connor did actually taste a few things at his party! He had a little taste of his special cupcake, grapes, Cookie Monster cookies, pepperoni, and a ruffles chip! It did him good to be sitting at a table with other children eating! Happy Birthday Connor! We love you to pieces!!

Wednesday, April 3, 2013

Tubes, sleep apnea, & 2 years old!

Age: 2 years!!
Weight: 23 lbs
Height: 32.75"



As you can see, we now officially have a 2 year old! Ahhh, where did these 2 years go?! Well, he had a fabulous birthday party this past Saturday. I will make a blog entry on just the party once I receive the photos! For now I want to update on everything since the last post.



Connor got his tubes several weeks ago. His ENT was going to remove his adenoids if they were enlarged, but those weren't the issue. He also did a scope to look around while Connor was under anesthesia and discovered that his vocal cords are part of the sleep apnea issues, not his laryngomalacia. Apparently when Connor was in certain positions, the vocal cords didn't move properly which caused him to quit breathing. So our next step is for him to wear Cpap when he sleeps! :( I imagine this is going to be a huge challenge with my strong, wild, determined little boy! He has to have another sleep study so they can adjust the cpap settings to determine what works best for him. Looks like another sleepless night at the hospital for this Momma. The study is scheduled April 23rd, unless someone cancels then we can go sooner.
*At the hospital with Daddy*


As for his ears, things have improved! He no longer has infections, he is babbling alot of new sounds that we have never heard, randomly tries to repeat something we say, his balance is improved slightly, his vomiting has decreased, he is putting alot more foods into his mouth, and lastly his hearing is 100% perfect now! I wish we could have gotten these tubes months ago! I am hopeful that his speech will continue to improve over time now that everything doesn't sound like he is underwater.



As far as development, he has some "quirks" that we are noticing more that he is getting older. He still tippy toe walks (forward and even mastered this walking backwards), arm flaps, doesn't really responsed to his name being called, becomes frustrated when you won't let him open and close doors or cabinets repeatedly, is full of energy (ie: running and constantly stays moving),takes 1-2 hours to calm down and go to sleep, cries at the sound of rain hitting the roof and motorized carts at the store, and many other little things. I know he has some sensory processing issues, but we are still waiting for an OT to come in our home. He also has been on a waiting list for another OT in Hartsville for over 7 months. I am anxious to get these therapies started, hoping they will help Connor tremendously. We are also on a waiting list for a developmental pediatrician who deals with preemies and developmental issues. While I talk about lists, he is also on another list for a care evaluation ( which is an Autism evaluation). He scored at high risk for autism on the M-Chat screening that his EI did. The CARE evaluation takes around 6 months to get into so we decided it wouldn't hurt to get on the list. If the time comes for the evaluation and he doesn't need it then great, but if he does then he already has a slot. We are not really sure what to make of all of his quirks: is it preemie related, due to all of his constant health battles... the list could go on and on. Regardless, we love Connor- he will always be perfect in our eyes and we are willing to do everything needed to make his life easier.




Please continue to pray for my dad and mom. Dad has his last day of radiation today in Charleston. He has completed 6 weeks of radiation and 2 rounds of chemotherapy. He has lost alot of weight, hurts pretty bad, very tired, and hates being away from home. We are hoping and praying he will be back home soon and that his recovery will go smoothly!



Ok....be on the lookout for the birthday party pictures soon! Gaby's (Kennedy's mommy) mother offered to take pics at the party since she said she needed some practice with action photos! And with 14 children running around, I hope she got plenty of action practice! ;) I can't wait to see the pictures!