And tonight, as promised, we picked out his big present. A fish! Something he has desired since seeing a fish at his Aunt Bean's house. Today he told me he wanted a "blue fish" (I speak "Brian" - but this was as clear as day). We met Ed after work at the pet store and Brian was over the moon looking at all the fish.
Check out his reaction when he got in front of all the fish...
Gavin was enthralled with the fish as well - and stuck his hand in the tank before we realized!!
Brian definitely was interested in Gavin's input when choosing a fish...
...and Daddy's, too.
We ended up choosing a blue fish - just as Brian asked for - and, thank God, one that is easy to care for. A male, blue Betta fish. And then Brian chose a decorative accent for the aquarium...a robot (robots are his current obsession). Somehow I doubt that robot will make it into the water. Why? Well, he is currently sleeping with it. Which leads me to part TWO of "The Night Before Three!"
Brian went to sleep in his BIG BOY BED! He will wake up three in style. Check out my "pre-sleep, pre-three, don your night-vision glasses now" interview with him:
He stacked up all his "guys"...his new "Angry Bird" plush toy that Daddy was suckered into after our pet store excursion (and the green pig, too!)...
...and his new, beloved robot that he's nicely holding up for the viewing audience.
He kissed Daddy goodnight...
...and then his Mommy - in an effort to prove that yes, she does exist, took their picture herself.
Am I the only Mommy that has to take her own photos in order to prove she is present? I'm always BEHIND the camera!!!!
Brian was THRILLED to sleep in his new bed, as you can see!
No fear. No anxiety. He was sound asleep within 15 minutes or less (which is typical). I really doubt that he will try to get out of his bed during the night or if he wakes up before I come in at 8am...but I will let you know in tomorrow's journal entry!
I really felt that three was the right age. Other's may differ...but this felt right to me. I didn't want to rush anything. We'll see how it goes!
Tomorrow, he will wake up three. And a new chapter begins...
Today I kinda sorta attended a training session given by the Pennsylvania Training and Technical Assistance Network. The course was called:
"iPads and iPods in Classroom and Therapy Settings: Powerful Tools for SLPs and Special Educators"
Here's a link so you can see what this class was all about.
It was from 9-3 and I must admit...I had high hopes. Three of Gavin's old and new therapists and his nurse signed up, too! Before I got there, I knew I'd need to leave early as I only had my sister until 1 or 1:30. Turned out - I was home by noon. The class, with no disrespect to the other attendees, was kind of a waste of my time. First, they had major technological issues. It was a webinar, meaning it was live in one location and broadcast to several other locations. The video feed kept freezing or skipping and everyone was getting pretty antsy and annoyed. Then, when the video did work, it was all content that I already knew. It just wasn't what I expected. So, instead of sitting there and playing Angry Birds or Scrabble all day on my iPad, I decided to come home to be with the boys.
When I got home the boys were eating their lunch. They had a great morning with their Aunt Bean! She had Gavin giggling...and she told me that Brian amazed her on the iPad showing her all his fun apps.
Speaking of which - today I got wind of an amazing deal! Target's "Deal of the Day" was an iPad for $449. It's a great deal for a first generation iPad that was hard to pass up. I ended up buying it for Brian so he can have his own and stop stealing Gavin's! I've been squirreling away money for this luxury purchase so this deal came at just the right time. Brian's going to flip out when it arrives. Turns out I bought it just in time as they sold out pretty quickly.
I am currently in an appeal process with our health insurance company. They had verbally and in writing promised to cover Gavin's bed back in JULY. Since then it was one stall tactic after another - totally wasting my time with "we need this" and "oh, didn't we tell you we need that?" and "you didn't send this". Finally they called to say they were sending the check - which I expected to be for the FULL amount of the bed which was over $5,000. Well - the check came for $2,000 and needless to say - I'm pissed. They're telling me that I must have forgotten something...which is a bunch of bull. So now it's "in review" - which is also bull since why should they need to review something THEY already promised to pay? I'm staring at the letter right now! (Well - kind of - I can see it out of the corner of my angry eyes)
Why is nothing easy when it comes to getting things covered for our superhero? Clearly they don't know who he is...
First, I want to thank so many of you for writing to me with your suggestions, support and ideas after yesterday's post about changing our diets. I was overwhelmed with mail from Switzerland, all over the U.S., Australia and England! Turns out it doesn't matter where you live - anyone can struggle and strive for change. As I sit here, I have a Taco Soup simmering in the crock pot for dinner - lots of beans and fat free ground turkey and corn. That seems healthy, right? I can freely admit that I am NOT a lover of cooking - definitely an "eat to live" person as opposed to a "live to eat". But I feel buoyed with support as I think about other menu ideas thanks to all of you. My meals may not be delicious - but I have to start somewhere, right?
This hasn't been the best day for me. I'm feeling a little overwhelmed with a very long to-do list and lots going on. Despite my list - and my mood - I kept my Dr. Trish appointment this morning. I normally don't like to leave someone new with the boys for at least two weeks...today marks Miss Anna's third day. But I made a commitment to myself to get back to seeing Dr. Trish regularly so I really felt it was important to go...and I'm glad I did. I would like to say I left there feeling "Zen like" and stress free, but that would be a lie. I think I'm pretty wound up and not having seen her for over six months definitely shows.
When I got home I got Gavin and Anna into the chamber and put Brian into the bathtub. It was a nice moment of the day - just me and my little guy splashing in the tub with his toys. When I came down I answered the ringing phone. When I heard Gavin's geneticist on the other end...I held my breath. I knew she was calling with the results from some of his testing. I wrote in a post back in July that Gavin was being tested for FG syndrome. It seemed to me...and to the genetic team...to be a very possible diagnosis for him. I admit that I hung my hopes on this a teeny bit - secretly wanting this (or really any!) diagnosis for him. Anything to "explain him". To my dismay, the results came back that Gavin does not have FG syndrome. It was a big disappointment. There are still possibilities out there and we're pursuing them, but for now Gavin will remain the mystery that he is. And that's okay. A title...an explanation...it would be nice. But nothing will change our love or our dedication to him or the way we treat him. I can promise you that.
So I hung up and regained my composure - got Gavin out of the chamber and into his high chair and started quickly feeding him before his therapy a half hour later. As I sat there, Miss Katja walked in! She popped by for a visit to meet Anna and see the boys. I was SO happy to see her and give her a big hug! And soon after, Gavin's therapists showed up. He was very happy to see Miss Janna after a long break...and then Miss Maggie immediately after.
He did a great job with both of them. With Miss Janna they worked on color matching and fine motor skills. And with Miss Maggie, he impressed her with his improved iPad skills. He consistently touched the screen in order to get his electric toothbrush (which is his current favorite possession!).
As soon as they left and the boys were safely in their cribs, I holed myself up in my bedroom. It's time to work on Gavin's re-authorization for home health services...something that is very important for him - and to me. It takes a lot of time - a lot of cooperation from his doctors - and it's very stressful. I also called our insurance company to check on Gavin's bed. If you recall, I wrote back in JULY that our insurance covered a special needs bed that I wanted for him. I was thrilled. Well, it's been one big stall tactic after another from them. It seems every week that I call there is something else that they need. It's a bunch of B.S., to be honest. The phone call left me infuriated. On top of all that, I'm also getting ready for a big consignment sale that I participate in twice a year called Just Between Friends - it starts the middle of next week. That also requires a lot of time and effort...but it's usually worth it in the end. And, of course, Gavin's birthday video. I can assure you that I will NOT be late like I was with Brian. And...let's not forget...quietly obsessing about pregnancy tests. I could find out any day and I'm not feeling super hopeful.
These all seem like small things - silly things, probably - and half I haven't even mentioned - but all of it piled up on top of each other - with a new person in the house to "train" at the same time - it just feels like a lot. I secretly want to get a hotel room this weekend so I can be alone and get through some of my "to do list" without distraction...and sleeping in would be nice, too.
Monday morning will find me back in the Fertility Clinic.
Back to square one.
I don't know what to say, how to feel, what to think...but I'm not giving up. At least not yet. I'm not as sad as I have been in previous months for some reason. It's impossible to feel cheated when I watch these kinds of things happening right under my nose...
God, I love these little boys of mine.
So, onward and upward it is. I have kept myself very busy over the last couple days - partly as a way to distract myself from feeling disappointed. Each year - sometimes twice a year - I participate in a huge children's consignment sale called "Just Between Friends". It is rather time consuming to tag each individual item - but worth it. I've made some pretty decent money selling at these sales. I started going through our basement (which would probably earn us a spot on the show "Hoarders" at the moment) and sorting through the clothes and toys that I'm tired of holding onto. Part of me feels that letting go of these things that I've been "saving for the next baby" will somehow open me up for that baby to come into our lives. Murphy's Law Baby. I have bags of clothes that we bought for Darcy - and every time I see them I feel sick. It might be time to sell them and make someone as happy as I was when I bought them.
Gavin had Physical Therapy with Miss Wendy today and worked so hard. I took a few videos so you can see his workouts! Today she zoned in on his tummy, leg, lower back and neck muscles. It's amazing how strong he's become!!
Here's Gavin working on his tummy muscles and his legs...
Working out his lower back...
And here Miss Wendy is pretending they're rowing a boat - which forces Gavin to control his neck muscles...use his lower back muscles...and strengthen his tummy muscles!
Miss Katja was a big help assisting Wendy during therapy. Gavin works much better when there's motivation, so Katja held up one of his favorite toys to encourage him to stand.
Wendy was amazed at how many times he squatted and pushed himself back up. His upper thigh muscles (whatever they're called!) are getting real strong, too!!
She also had Gavin walking in his walker. I'm throwing this question out to anyone who has a Nurmi Neo - or really any walker. The issue we have with Gavin is that the walker gets away from him. He hasn't learned to control it yet. The wheels don't have any settings that help slow it down. I've added hand weights to the front and sand bags to the back hoping to weigh it down, but that hasn't helped much. I figure there has to be some kind of homemade remedy to add friction to the wheels. If anyone has any suggestions, please pass them along!
I also wanted to put our other dilemma out there to solicit advice. Gavin constantly puts his hand in his mouth. We want to stop this behavior (along with his other mouthing behaviors) but nothing we've done so far has worked. You could stimulate his mouth with an electric toothbrush or a Nuk brush for an hour and he'd still seek the inappropriate behaviors. I've thought about putting something on his hands - think "lemon juice" or "bitter apple" - but I would worry about him rubbing his eyes. Has anyone dealt with this and could pass on some suggestions??
I'll end with some exciting news. Gavin's bed is in the works! I submitted the bill to our insurance company and they should be sending us the check within a few weeks. We'll then send it to the gentleman at Cyr Designs in Maine so he can start building it! I have been obsessed with choosing a color for the sidewalls (that are made of marine awning - read: easy to clean!) to match his room. The bed is pretty huge - over six feet tall and over seven feet wide. I'm actually considering switching Gavin back to his old room - maybe. This bed will cover up one of the cool trees we have on his wall. I guess we'll have to see when it gets here. I'm happy to have something to look forward to...
Today was SUCH a busy day! There's a lot to read today, but I promise you that reading to the end is 100% worth it. Would I lie?
I spent much of the morning working on Gavin's bed situation. I was on the phone with our insurance for quite a while trying to get the status and explaining the necessity of this bed to everyone who would listen. Then I started to work on the letter of medical necessity. I only got through the fist paragraph. Technically, a letter of medical necessity is written and signed by the doctor. But truthfully, I have written every single one over the years. (I highly recommend that to everyone) I know all the facts and it saves everyone so much time for me to just crank it out. Then I hand it over to the doctor - they copy it onto their letterhead and sign it - and Voila! But that's our little secret, okay?
And about this bed I want for Gavin...I've gotten a lot of mail with questions and some outrage as to why the bed is so expensive. I plan to do a post someday soon on the prices of all things "special needs" - you will be very surprised. I've done my research and this bed is actually one of the cheapest (price-wise) out there. Some go upward to the $20,000 range!! And those, quite frankly, look like they belong in a Russian Orphanage. No offense to any Russians or Orphanages.
So, after my busy administrative morning...there was a knock on the door that brought me out of my insurance induced fog. It was Miss Jen!! Today was Brian's first day of Speech Therapy! It was so nice to see Jen - she has known us since Gavin was an infant and she was HIS therapist. Brian warmed up to her instantly...I'm sure he remembered her. They got right down to the business of playing together. She pretty much let him do his thing and found opportunities to help him communicate while he was playing.
They worked on puzzles for a bit so she could encourage him to identify pictures and try to imitate animal sounds...
They played with his trains so she could encourage "Choo Choo" and "Up" and "Down" and "Help"...
They also played a game on the slide. Her arm was a gate and she made Brian count to three and then asked him to say "GO" before she let him slide down. Here's a video of the two of them in action...
Then we moved into the Living Room where our Miniature Golf Course is set up. (Thanks to our generous neighbors, the McGrail-Peasleys for that awesome gift!!) I know what you're thinking..."Why didn't I think of adding a Mini-Golf set to MY Living Room?!?" It is a very beautiful addition and perfectly matches our huge Jump-O-Lene. I think I have a future in interior design. Moving on...
We use the course to roll cars and balls in the tracks for now which is super fun. Especially with Matchbox cars - they go fast! Miss Jen and Brian had fun racing the cars and she encouraged him to say "Zoom" and "Go". By then it was nearing the end of the hour and I could tell Brian was running on fumes. The entire session he was a jumping bean - super hyper - even doing things that aren't typical and aren't necessarily appropriate (like throwing things at us). Kids always make liars out of you - it was only 40 minutes earlier that I was telling Jen what a good boy he is. Ha ha! But all in all, he was a good boy and as you can see...he was in love with Miss Jen.
The boys got in their highchairs for lunch and I couldn't resist taking a reunion picture.
Jen left me with the advice to "Hold Out". At first I thought she was giving me marital advice - but came back to Earth and remembered that this was about Brian. She said to wait if I know he can use a word for something. For example, when I know he wants more of something - I shouldn't give it to him without him actually saying (or trying to say...or even signing) "more".
It's so nice to have you back "in the family", Miss Jen!
After lunch, Gavin went down for a nap and Brian and I took a little road trip! I wanted to bring dinner over to my parents. It just so happened that today was my Mom's "Mahjong" game, which she was hosting. My Mom, my Aunt Mary and three other women have been playing this game as long as I've been alive. That's a long time - over 40 years! Every week they rotate to one of their houses - play the game for coins and then eat dessert. In all these years, I've never learned to play the game!
I'm always so happy to see the ladies. There's my Mom, of course, Mrs. Fazio who lives nearby, Mrs. Gallagher who lives down the street, Mrs. Chaloult who was also on our street and my Aunt Mary! These women have seen me grow up...come to my graduations...my wedding...they ALL might as well be my Aunts. I love them all very much.
On the ride home, I could tell that Brian was exhausted. How? Because he stops caring when we pass by a flag. I thought - this is the day to try his big boy bed for a nap. I was running a little late so, unfortunately, I got home at the tail end of Gavin's feeding therapy. I got the report from Miss Maggie that Gavin did a great job crunching on fishies and potato stix, but hated the cold carrot sticks. We said goodbye and I took Brian upstairs to his room.
We both got into his bed and he instantly got under the covers and pulled them up to his chin. For two seconds. Then he got up...crawled to the end of the bed...got down using the step stool...grabbed some books...crawled back up...repeat. So I decided I would pretend I was sleeping - thinking I would model what he was supposed to do. That's when he decided to get one of his favorite books - one that happens to be about 15 pounds. While I was fake sleeping, he accidentally dropped it right on my temple. Big bruise coming soon.
I bagged the whole idea and put him in his crib - where he promptly fell asleep. I need to research strategies for helping him adjust to his new bed. I'm open to any tips or tricks from all of you!
While I sat and wrote my journal today, the phone rang. It was a nurse assigned to the claim for Gavin's bed. We talked for quite a while and I explained why a bed like this is necessary for Gavin. How he has no sense of danger...how he mouths everything and this bed doesn't offer anything to bite...how the other beds aren't enclosed and he could easily fall out...how this bed is actually one of the cheapest on the market...how he currently gets his legs stuck between the bars on his crib - and would with the other beds out there that have slats...and on and on and on. I told her everything I would have included in my letter of medical necessity. She said she would do some of her own research and get back to me. I continued to type about Speech Therapy and Mahjong when the phone rang again.
"Mrs. Leong, this is Peggy from United Health Care. I am calling to tell you that your son's bed has been approved."
Gavin will get his big boy bed!! What a way to end the day.
Hey, remember yesterday when I showed photos of the bedding I liked for Brian's big boy bed?
Yeah, about that...
Brian would like to show you his new bedding set and explain how he feels about it. Watch this...
The comforter is a down alternative - very thin - and it feels like silk.
I was able to get the comforter, sheets, pillow cases and shams and bedskirt which I just tucked under the boxspring...
for...are you sitting down?
$29.99!!
All of it! I found it at Marshall's! Then I found the fun dotted pillow at Home Goods, where I also got a plant that reminded me of the islands because...well...at that point I just couldn't stop myself.
The cute jungle stool is actually Gavin's! It was a Baptism gift from his Godfather. It looks so good in Brian's room, though, that I may just have to find Gavin another one to match his room.
This morning we had our house cleaned professionally so the boys and I spent much of our morning outside. We went for a walk...played on the swingset and then we took a slow drive around town to hunt for flags. Brian was in Heaven when I took him to the Freedoms Foundation. They have a flag flying that is probably as big as a house. All I heard from the backseat was WOW over and over and over.
Later on I spent two hours shopping by myself which was MY Heaven. Ed stayed home and played with the boys. They miss their Daddy during the weekdays. I love how their faces light up when he walks into the room. Gavin, especially...he is Daddy's boy!!
I have some AMAZING news. After I took some time to process YESTERDAY'S news - about Brian needing not one, but TWO therapies a week - I had an epiphany. These therapies, whether I think he needs them or not (yes, I'm still partially in denial - I admit it) are going to be great for him in every single way. I really turned my attitude around. And today I got news that made it even greater. Brian's speech therapist will be Jen McDivitt, who was Gavin's speech therapist until he was three! And Brian's teacher will be Christi Gleason, who was Gavin's teacher. Both of these women, besides being part of our family, have known Brian since he was born!! I couldn't be happier. Jen actually moved another family around (with their cooperation, of course!) to fit Brian in and luckily Christi was available on Wednesday's which was our only free day from therapies! Did I mention how happy I am about this?
I talked to Christi on the phone for a while this afternoon and, of course, she asked about Gavin. I mentioned to her our most recent struggle. Gavin's constant mouthing, banging his teeth and drooling. I told her we have tried all different types of oral stimulation - but it doesn't matter. Christi always has great tips - and sometimes tells me things that make me go, "Duh...why didn't that occur to me?!!?" She asked if I had consulted a dentist. I seriously hadn't thought of that! So on August 1st Gavin will be checked by the dentist...and I am bringing Brian along for his first appointment, too.
Gavin had Occupational Therapy with Miss Stephanie this morning...who also tried to brainstorm ways to stop Gavin from these behaviors. She spent about 10-15 minutes giving him oral stim - ice, toothbrush, nuk brush, and more. Each time she'd stop he'd rush back to his toy to mouth it or he'd put his hand in his mouth. They moved to the art table and worked on fine motor activities. I caught him in a sweet moment...
But in the interest of full disclosure, the therapy session looked more like this:
He wasn't super thrilled to be asked to work and fought her nearly every step of the way.
Oh, Gavin...
Yesterday afternoon I took the boys shopping to see if I could find bedding for Brian. I know what I don't want. I don't want characters...I don't want "too busy" since his walls are so busy...and I don't want matchy-matchy where there are 8 accessories that all coordinate. I figure if I just got a comforter or bedspread that was rather neutral, I could put any kind of fun sheets underneath and fun pillows on top. Then I could have my Mom make curtains in a fabric that would coordinate without matching. Oh...uh, Mom? I forgot to tell you that Brian wants to hire you. Can you fit us in?
I brought this one home and it's growing on me! It's very subtle in person and the green is very soft.
I thought the leaves on the comforter resemble the leaves on the trees on his walls.
I haven't totally made my decision. But in all the online shopping and the small amount of in store shopping - nothing is really jumping out at me that I love. I might try just a solid beige or green color next. We'll see.
I got about ten emails after yesterday's post telling me I need bed rails. I didn't mention it in the post, but I already ordered bed rails - extra long ones, actually. Thanks for your concern, as always! Brian loves to climb up on his new big boy bed and does a great job getting down. I am not going to rush this process at all. He's able to see it every day and night right across from his crib...and we have SO much fun reading and giggling on the bed each day.
Hopefully it will be an easy transition.
Speaking of beds, I have chosen a bed for Gavin that I think will suit him perfectly! It's called the Courtney bed and it looks like this:
You can choose from a variety of colors. I can just picture Gavin's Twilight Turtle illuminating all of the netting with stars at night. It looks like just about the coolest "fort" ever! Now comes the process of getting it approved. I was on the phone with our brand new insurance company this morning. I introduced myself as their future worst nightmare. Just kidding. Nothing "special needs" comes cheap and it's likely that they will cover some or none - not all. This bed alone is $5,000. I could get a brand new dining room set for that - or less. But who eats in a dining room anyway, right?
I would say that 95% of the time I forget Gavin is "different". Seriously - I do! His peculiarities and his disability have become so normal to us that it's easy to forget sometimes that it's not normal. That he's not normal.
Today was one of those days that fell into that other 5% of the time. Gavin was difficult for some reason. He was sensory seeking all day long - thrashing around, drooling a lot, kicking. He wasn't upset - just couldn't be still! It made it hard to wrangle him during diaper changes...to hold him without feeling like he'd fall out of my arms...to get him strapped into his car seat...and he was extremely difficult to feed. It was during a meal that it hit me. When I was finally able to get some food into his mouth, he flung his head back and forth and food flew everywhere. I had a moment when it was hard to choke back the tears. Gavin is different...and it hurts.
But, he's super handsome! Check out his new short summer haircut...
Itching to get out of the house after naps, we took the boys to a furniture store. Even though I'm not ready for Brian to be out of his crib yet, we have started looking at bedroom sets for him. He definitely needs a bigger dresser STAT due to his parents shopping addiction. Our boys have WAY too many cute clothes.
We did see a set we really liked...
...but I couldn't imagine giving him a twin bed. They just seem so small to me!! Problem is, Brian's room is the smallest in the house. We need to do some measuring and re-thinking to be sure a full bed would work. I want to be sure he has room to play and read and just "be" in there! Stay tuned...we'll figure something out!
As I walked around the store excitedly looking at "big boy beds" for my 2 1/2 year old, my heart started to ache for my 3 1/2 year old. I have had zero desire to take Gavin out of his crib. He does such a great job pulling up and walking around holding the rails - I'd hate to take that joy away from him! But I think I'm changing my mind. Gavin's nurse, Miss Kim, has recommended a Sleep Safe Bed several times to me. She has one for her son and loves it! For a while, I rejected the idea - hating the thought of adding a "medical type" bed to his room. But I think I'm going to look into it. Gavin's insurance may even cover it! You can check them out on their website - I'd love to hear your thoughts.
I think what hurts sometimes is having to purchase "different" things that remind me that my child is "different". It's a glaring reminder. But I also have to remember that purchasing "different" things enables my child to feel normal. And at the end of the day, it really is all about him. Besides...every little boy deserves a "big boy bed", don't you think?
