Wow....how does this all happen so fast? All the hype of the Hoidays and then poof..they are over:( Well, My Monkey Doodles are all enjoying their holiday gifts this year. The big one was for Cole and Jack. They received an Xbox 360. Yes, we gave in to that one. In return, I had to re-organize everything in the playrooms and TV console so I was able to do a lot of clean up! That feels great!
Sam received a new pound the ball wood toy, music box, leap frog catepillar, books and play dough. Oh..his big gift is a hanging indoor SWING from HABA toys. It holds up to a couple hundred lbs so we can sit and read to him in it. I think him and his brothers will love it. It will go in his and Jacks room once I am done re-painting it!
I have been totally slacking on the blog with darn Fbook now!
So Sam is 3.5yrs old and yes, he has Down syndrome. A lot of kids his age with Ds to have words at this point. Sam has none:( I know he has so much to say. He does sign a lot but nothing vocal yet. Just some sounds. He has been getting speech 3x a week at his school and I just asked to revise his PPT or put an adendum on it for a couple reasons. 1. Sam is not talking and also has Apraxia. The recommended resources for him for that is SLP 4-5x a week. So I am asking for another 1/2hr of SLP for him. 2. GLASSES! Yes, Sam now has glasses.They are prisms. His vision is actually pretty good but he does not track well. I totally notice a difference on how he looks at thinks with them on! He is so cute I just can't stand it! We have a new eye DR. who is a behavioral eye specialist. SHE ROCKS! I am taking Sam's big brothers to her to get checked out too! Who knows....I am thinking this is why Cole is having issues at concentrating. She works a lot with kids and schoolwork!
Soo......received a call today from the director of Sam's school and the PPT is scheduled for Jan 6th at 2:30. Anyone want to join me:) hehe. She said, Sam WILL be getting slp 4 times a week...we are going to add another 1/2hr! WAAAAAHHOOOOO! Oh....did I mention...his mommy ROCKS! He needs the gift of speech so badly and they will do anything to help him there!
Well we spent a few hours up at CT Childrens this past Tuesday. Sam had to have his 3rd set of tubes and a bronchoscopy. He is doing great! He gets fluid often on his ears which can impact his hearing so we keep him as fluid free as possible with the tubes. Croup happens about 8 times during the cold season with Sam so the ENT wanted to check his airway for obstructions. Sam is free and clear. His air way is narrow but that is normal for a person with Down syndrome. We just have to dive into the liquid steroid for 2 days when it comes on, which btw is like 1am! This way we will avoid and ER visit.
So...as you can see Sam recovered beautifully! He is still nursing a little and need some TLC in recovery~ No wonder he bounced right back!
Well..I was brave and so were Cole and Jack this past Friday. They both had their tonsils and adenoids out. Dr.S said "those tonsils were like cottage cheese." SO glad they will not suffer like I did as a teen with strep and such! Here they are...so happy before surgery! We are 3 days post op with a lot of ice cream and TLC.
So Sam was fitted a few weeks back for AFO's. He was doomed from the start when it comes to his feet. Mommy pronates, grandma...Aunties and so on! Sam will strengthen his leg muscles by having the correct footing behind it.
We could NOT find a shoe that fit this AFO at all. We tried Target, Payless, Stride Rite...you name it and even taking the inserts out a no go. We knew we could order the ugly Hatchback shoes for him but I would not put those on my other boys (UGLY)..why Sam? I was determined to find a normal looking shoe for him!
We found this ROCKIN store called FOOTPRINTS in Newington,CT. We went on a Saturday and they were so super busy you have to take a number! The service there reminded me back in the day when my mom used to take me to Buster Browns to get my shoes 2x a year:)
They really know there stuff there and deal with AFO's all the time! We found a great pair of New Balance Sneakers in XX Wide and we also picked up a pair of socks so he will not chafe at all on his legs. They really are great there! I will post a pic of him wearing them soon. We have to wean into them:) We did pick up a pair of inserts for his other shoes when he is not wearing the AFO's so he can have support all the time.
So we had a very productive weekend CLEANING. My room was last week. This week was the playroom/office. Whew, is all I can say. I just don't know how we can build up so much stuff. Really, I am not out buying toys every week for my kids. I have figured it out after cleaning up the war zone. It is BOYS! They love to take apart things, cut things up and throw stuff everywhere. Really. I have never seen so much cut up paper in my life. I am banning them from scissors (just kidding, but I would like too)! So, 9 big black garbage bags later..yes 9. I would say 4 of them were garbage and the rest Goodwill. It does feel good to look in there and see a nice organized area!
We totally SCORED at the Goodwill while brining stuff there, we made 3 runs this weekend. We picked up an Imaganarium train/play table for 24.99 in mint condition. Looks like it came right out of the box. Unbelievable! You just never know what you can find. We picked that up quick as it would not last long there. The boys LOVE IT! We had a train table from about 9 yrs ago but the board was trashed and it did not have drawers like this one!~ WAHOOO!
WEll...we had to rip off our back porch completely...the wood was rotted and it was really falling apart. So for right now there is only one entrance to our house..thru the front. Our bilco door to the basement was also in disrepair so that is gone too! Our original plan was to add on to the back of the house in place of the porch but....of course $$ is always the issue isn't it?? So we are just adding a very much need mud room! YAY! Need one with 3 boys..you should see what comes in from those shoes..etc! Finally, a place to put backpacks, coats, boots. A moms dream! The rest of the back will be a patio. We have new french doors that we purchased years ago that will go in off the back of the house and we will put in a patio of some kind off of that. Hopefully will be ready for next year!
Well...everytime the 2pm parade came along this is what Sam did. The picture says it all! LOL. We were testing out this new carrier by Phil and Teds. It is the Metro. We like it a lot. You can check it out at our store www.shoppapoose.com.
Sam finally woke up and we were able to hit the 7pm parade. So all in all we saw the same parade 3x but had fun!
Sesame Place was fun. Good price and good times:O) Would do it again for sure!
Sooo...we are on a mini vacation to Sesame Place in Langhorne, Pa. The drive was not bad at all..about 3.5hrs. Pretty much 95 south all the way for us.
We arrived late thursday night. Staying in Willow Grove at a Marriott Spring Hill Suites which is a about 15mins away from Sesame. Yes, once you max out of a family of 4 you have to go with suites for hotels! Just works better that way:) Anyhow, there are 6 of us traveling. We took along my dear niece who is a kid at heart herself...at 24:)
So....woke up Friday AM to breakfast at the hotel then off to Sesame Place. Had a great day. Sun was shining! First stop was a roller coaster of course! Then we went to Elmo Live. That was great. Sam was in awe seeing Elmo:) Then...off to the water activities. Sam was completely tuckered out and fell asleep while riding on my back then we transferred him to the stroller to nap...he missed the parade so we hope to keep him awake for that tomorrow!
Well the sun has come out! WAHHOO! Off to Camp Harkness for some beach fun. We had a very eventful week this past week. CCMC for test, appts and more. We are preparing for our mini vacation to Sesame Place next week too. Should be fun..just a 3 day get-a-way.
Sam stayed with his friend Stephen this past week for 1 day while Mommy was at a Phil and Teds Seminar in Boston for work.
Well, Sammy survived the Barium test at CCMC. They were looking for Hirshprungs. That is where the colin is very narrow after the opening of the bum and it is hard for stools to pass. Ok...too much info, I know..I know. Anyhow, He did great. They gave him some sleepy juice and he was glassy eyed as he watched Barney while the DR.did the test.
So....reports so far show no signs of Hirshsprungs. We will still wait to hear from the G.I. doc to get the clean bill. What does this mean?? Well, Sam just has low gut mobility from low tone in his G.I. track and will always have to be on Mirylax daily so he is not in pain from being constipated:( We have tried it all and the Mirylax seems to work.
Here are some pics ...Sam feel asleep after the procedure so we had to wait a bit longer for him to wake up:)
What a blast we had at the CDSC Annual Picnic at Hammonassett. We had loads of fun. The day was beautiful. The kids enjoyed the beach, sensory tables, beach balls, music, great food, ice cream and more. Here are a few pics to show you how much fun we had. Sam tuckered out and took a nice nap under the registration table!
So had to make a decision what to do for therapy for Sam for the 4 weeks he is out of school. We just don't want to do nothing as he has made such progress! 4 weeks is not a long time but can be long enough for regression.
I am trying to find out if the school is responsible for providing services even though there is no school in session? If anyone knows please reply back.
We are continuing with SLP, PT and OT for now and will be paying an out of network fee since the therapist are all out of network. These are the same therapist that work with Sam at school and they are fantastic. They work at Therapy Works in Old Lyme with Deb Dixon. Top notch.
We are also getting some serious orthotics for Sam..I will be posting about this soon!
It is hard to believe this is Sam's last week of ESY (Extended School Year). He will have had 5 weeks this summer and then start back up at CT College Childrens Progam in late August. As for his brothers, they are at Holiday Hill Day Camp this and last week. They are loving it! Big brother Cole is doing a sleep over Friday night and big brother Jack is doing an extended day til 8pm tomorrow night to be around the campfire. I am sure they will have youth memories of camp to last a lifetime!
We had a great day yesterday at Camp Harkness in Waterford. I must say, the beach is absolutely beautiful. The adaptive playscape is great and parking is a hop away from the beach. No long walking. The restrooms and changing area is clean and they have outside showers to rinse off. Lots of picnic area to barbeque if you wish. We had a great day:)
I sent in my information to get a lifetime FREE pass. Here is the link to check it out~
Ok...so as I am trying to update this blog on my laptop, Sam decided to blog on his own by gettting on the desktop. Why do you need a full diaper on to type?? I will tell you why...behind the half on diaper in front is a chair with PEE on it! HAHAHA! Oh well....that chair has seen better days any how! Time for an IKEA trip. I think when he climbed up in the chair the snaps came undone:)
Sorry everyone. It has been too long for my postings for sure! I am going to get better about this for sure! SO..I changed my blog name to mymonkeydoodles because Sam's favorite cuddle is his sock monkey. I will post a picture in a new header soon. I promise to post more on this pre-school venture he is starting. Sam is going to CT.College for Pre-school 5 days a week..full time. We had a round about with our district and they agreed there was not an appropriate setting for him and we agreed that out of district placement was appropriate for Sam. This I am happy about. I am not so happy there is no place for him in our district that is appropriate (mainstreamed) but that soon will hopefully change. THey are trying hard to make changes. THey just would not be ready for Sam by May 4th. I am also on the FAST team with our district. It is a parent/teacher advocacy group. Post later!