Overwhelmed and Underwhelmed...

This morning we were up, dressed and ready early. Miss Stephanie, Gavin's Occupational Therapist, was coming for breakfast so she could work with Gavin on feeding and using utensils. He did a phenomenal job. While I've been working with him on eating solids, I don't always hand him the fork or spoon to do it himself. (Note to self: I will now!) He did a great job - check it out!

We couldn't do entire meals like this. Gavin successfuly fed himself at least five or six bites in a row - of pancake, banana and mandarin oranges. But he tuckered out after a while. It's a lot - the processing, the physical demand, the chewing - it's exhausting for him. But it's a start! Miss Stephanie was very excited.

While Gavin was feeding himself, Brian was next door in his chair practicing drinking from an open cup. He's also doing a great job! He needs some reminders to go slow when he's tilting, but otherwise - great!! And he's super proud of himself after every sip. He's asking me for "more" with his sign language in this photo. Although I have to say, he's been doing a great job stringing words together with some prompting. I always have him ask me, "Mama...more milk, please!"

Soon after Stephanie left, my sister, Bean, arrived. She came to stay with the boys so I could run to my ultrasound. The boys LOVE Aunt Bean. The other day she taught Brian to play "I Spy" and he's been asking me to play ever since. Brian was very excited when I told him Aunt Bean was coming this morning.

My ultrasound this morning was a bummer. They were underwhelmed by the number of follicles I have...and so was I. It's all a wait and see - they have to grow to a certain size before they are ready to release. In this case, they will be extracted under anesthesia in a procedure fittingly called "Egg Retrieval." We could be looking at the end of next week for that. I drove home in tears - really disappointed with the number of follicles. A greater number of follicles give you more of a chance of getting at least one good egg - which is all we need! I could have ten follicles - but only one that is good. So the more there are the better our chances. I'm probably not explaining this very well. Sorry.

I came home and had some work to do with our insurance company - which is never, ever fun. I have never - ever - dealt with an insurance company that made a member jump through a thousand hoops to get something. We now have United Health Care. They give you instructions - which you follow - which lead you to another person who gives you another set of instructions - which differ from the first set - and then the second set, which just gets you more confused, leads you to a completely different department that tells you that you never should have been in the first department to begin with - that they told you all incorrect information - and - confused yet? Welcome to my world. I hung up so defeated - which I'm sure was their goal.

Later this afternoon I took the boys for haircuts. As usual, they were so good. I think they're just so used to it now - it doesn't phase them at all. But between the hairdresser and baths when we got home - something happened and I don't know what or how. Gavin, who rarely cries - and when he does, he means it - has been very upset. After his bath I noticed his eye - the bad eye - was red. That sometimes happens when it gets wet - and it quickly recovers. This time, it didn't. I put extra ointment in his eye at bedtime hoping that would help...but I'm worried. I just spent the last 45 minutes with him - singing and rubbing his back and trying to get him to sleep - but he was just so upset. I'm not going to lie...I'm freaking out a little bit. I plan to go back in a few times during the night to check his eye - and if needed, add ointment. Please pray that when I go into his room tomorrow I look over his crib and see the whites of his eyes - literally!!

I'm pretty confident that I need a really, really good cry tonight. And maybe tomorrow.

You Win Some, You Lose Some...

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...

Mystery and Misery...

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.

A girl can dream, can't she?

1,2,3 - GO!...

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.