Monday, April 30, 2012

We've got this

I've had quite the day of phone calls and meetings about the boy's speech progress and summer school. It all kind of happened at once. I had a message on my phone from Brady's therapist while I had the boys at the chiropractor this morning. The therapist said that Brady was approved for extended speech therapy into the summer months from the school district. It was deemed necessary given the fact he would lose his progress, and his condition requires consistency to be successful. This is such a relief to me!

Then I had a meeting with the district psychologist at the house today to go over a questionnaire and to get all my concerns noted. Of course the boys picked this 30 minute meeting to have a massive fight with each other over a toy (that we've had for TWO years, so yeah, let's fight about it NOW) and I had to excuse myself and give Jax a time out. I couldn't help but laugh that the next standardized question asked of me was, "are you concerned about Brady's aggression being an issue socially?" haha, um no, but how ironic was it to have that fight happen when that question came up. Ohhh the irony.

The meeting went great, and I was told to wait for a call from the therapists and district coordinator who will be scheduling Brady's testing over the next 2 weeks. I saw that I missed a call during this meeting and it just so happened to be Jax's speech therapist (when it rains...). So, I called her back and then at that moment, the door bell rang (it was Jax's medical supply order for May) and Jax went running to the door and slipped. He fell and hit his head and started screaming. Um, hello chaos. I asked the therapist if I could call her back, picked up Jaxon and opened the door. Thankfully Jason was home working for the day, so he took over signing for the shipment while I helped Jax get over his boo-boo.

I got back to the phone call and it was VERY surprising. First of all, I haven't touched base with Jax's speech therapist at his school in awhile. Jax receives her services while he's in school, so I'm not picking him up from this woman, so it just works differently than all other therapists I've dealt with. Also, Jax has been progressing, so I've had no reason to call with concern, so I've been comfortable waiting for his yearly IEP meeting that is in a few weeks.

Well, the therapist called me to discuss the summer school option for Jaxon. She said that she doesn't think he would LOSE too much progress, but she feels that he is in the middle of emerging progress that in her opinion, needs weekly intervention/therapy to actually... emerge I guess, and he's at a very impressionable age where it would be best to do it now. She then mentioned that she heard Jax had an identical brother who was in speech. She asked how he was doing and she said she was going somewhere with this and she'd explain. I told her how Brady has been struggling and we're actually getting him summer therapy through the district (just confirmed today) and he'd hopefully be in Jax's preschool course next year. She said, "Here's the deal. Jax has a very clear case of a neurological based speech disability called Apraxia of Speech, and it can be genetic, so considering he has an identical twin..." I actually GASPED out loud at this point and she stopped talking.

She asked if I was alright, and I said yes, that it was just that I've been dealing with everyone telling me Brady was most likely Apraxic, but every time I researched it online, all the videos of the children sounded like Jax (did I ever write about that on here?). I never understood why all the examples of children actually spoke better than Brady, but REALLY sounded like Jaxon. I told her I felt validation and of course slightly overwhelmed. But ok. Processing it all... with as much perspective as I possibly can.

She told that me that there is always a chance that an Apraxic child will never fully gain proper speech, but it's a better chance that the child would. I told her we've beaten bigger odds than this - so we've got this :)

The plan is to get the boys two 25 minute sessions of summer school each week for 6 weeks between June and July. Then they will will have preschool start up in Sept with their therapy included. I also have their private therapy with Mr Nick (every week for Jax for feeding as well, and every other week for Brady).

I've got dinner in the oven and a pile of paperwork starring at me to do when the boys go to bed, so I'm really ready for this Monday to be over - whew!
Otherwise the weekend was nice -it was freezing outside, but otherwise, it was nice. Jason brought the boys to the gym and to the batting cages at a company his friend owns. We took the boys to Auntie Rachel's for a sleep over that afternoon while Jason and I went to the ARCW Make a Promise Gala. My friend Krista is the event coordinator, so it was a blast to see some of my friends all get together for a great cause!
The boys both have a cold that has me constantly wiping their nose. I'm pretty sure we've never escaped an April without a "spring-cold" yet! Ahh, but we were close this year!

My little transformers!

I got "gagafied" at the Gaga Gala.

Jason and I before dinner


Gaga impersonators doing there thing!

Mmmm, I think I will leave it to the professionals.

Some of the ladies!

Thursday, April 26, 2012

He pooped on the POTTY!

Well, it may not have been totally "real", but it definitely happened!
I was upstairs putting towels away in the hallway closet and Jax was goofing around by me and suddenly took the "I'm pooping" stance. I asked if he was pooping and he said yes. I asked if he wanted to stop and finish on the potty, and he said yes. Um, ok, what the heck. I took him to the potty, took off his diaper (that thankfully didn't have a super messy poo in it) and put him on the toilet. I walked out and stood by the door and said, "ok, let me know when you poop on the potty!". Sure enough, about 1 minute went by and I hear a little voice, "I pooped potty!".

And by golly, the little man did.

We celebrated as if he had just won the Nobel Peace Prize! I told him to go tell Brady, so he ran downstairs and I heard him say, "Bubba, I pooped potty!". ::no response from Bubbers:: He was SO excited. We talked about it all day and night and Jason came home giving Jax just as much praise.

I have no idea if this is a nice little planted seed or anything, but it was so neat to happen regardless. I keep telling both the boys that they can go peepee or poop on the potty anytime they feel it. They both say, "OK", but I'm not quite sure if it's hitting home.

So yeah, I always have the odd ducks. A poo first. Isn't it always pee first, and a battle with the poo??

In other news, Jax has suddenly had a tough time with a few of his meals since last night. He is gagging and puking a bit, which confused me until I saw a nasty runny nose on Brady this morning. Ahh, Jax must have this cold and is gagging a bit. So tonight we went slow on the dinner feed and once he looked a little gaggy, we talked about the exciting potty, which diverted his attention, and we had him finish up with milk instead.
I think Jax will be doing more of his high calorie milk as a meal when he has colds until the gag reflex is better under control. We've been pretty lucky to go almost 3 months of complete health, so we can't complain about a simple cold. (knock on wood!!)

OH, and not to leave this post without bringing poop back up again (you're welcome)... I gave the boys a bath last night and Jax was yelling about poop. Sure enough, there was poop in the water and kind of all over. I drained the tub and got it all out and gave the boys a SERIOUS talking to about how poop goes in the potty (as I was scooping and pouring it in). Both of them said they did it, so I have no idea which one of them did it, but maybe that pep talk/scolding helped move Jax's big potty trip today.

And yes, you can believe that I texted Jason a photo of the piled up poo in the bathtub and asked how his night was! I'm a klassy gal.

Tuesday, April 24, 2012

School plan info

Brady had a good one-on-one therapy session today. I sit in all of them now and record any sounds/words that Brady says for the therapist. I realized that none of them are ever spontaneous except "dee dee" meaning "thank you". Although he does point to the signs on the board (like snack, or music).
The therapist, who is filling in for the therapist on maternity leave, said it took her a few weeks, but she thinks she's finally realized HOW to work with Brady since he needs work on the sounds of words. I told her I was getting nervous about the school year being done next month and Brady losing some speech services over the summer. I'm considering paying out of pocket, on top of current co-pays, to get Brady more through our private speech therapist. She mentioned that Brady may be a candidate for some summer help through the district, but it is for special cases where a student will lose considerable progress. She made some notes and said she'd pass it on. Hmm, we'll see where that goes, but that would be nice.

I got a call back from the district and scheduled the parent meeting for Monday. This is where I will discuss all of my concerns and then the district has to be sure to cover them with testing and placement. It's also a way for the district to make sure the delayed/disabled child is getting appropriate care at home - I assume much like how Medicaid would come to our home to be sure that we can not only care for the child ourselves, but to make sure we're not adding to the issue(s).

Brady's IEP testing will be taking place the 3rd week of May. I'm just waiting for the entire team to agree on a day/time that works with everyone. I think that Jax's "Early Childhood" (aka - special needs preschool) teacher (Miss Sue) will be attending as a consultant as well, but I"m not positive on that.

Jax's teacher told me after class today that Jax's IEP update is next month and she'll send a note home soon on open dates/times. Wow... that's a lot easier of a process than what I'm going through with Brady! I guess it makes a big difference if one child continuing services (Jax gets OT, PT, Speech and cognition work through a preschool class) compared to a child who is looking for more help or possible additional services.

So hopefully we have a plan in place for both boys by early June.

Sunday, April 22, 2012

Well rounded weekend

When I picked Jax up from school on Friday, his teacher told me that he ate a NOODLE! Say whaaat? She said they were eating "princess soup" and the noodles were soaked in broth and very soft. I assume they were small spaghettio type noodles. She thinks he swallowed it, rather than chewed it, but hey, it's a good step! She said he shook and clenched his eyes shut, but no gagging. woot!

We were up and out the door early on Saturday morning going to the Y, and getting some of those life-necessities done, like getting an emissions test on the truck (yup, I know you're jealous!) and getting coffee (yup, that's my necessity). We went to a second hand sports store to stock the boys up on t-ball supplies (we've been using our neighbors making sure the boys liked it), so they both got a helmet, glove and bat. Jax has an appropriate left handed glove now. The boys played outside the rest of the day and would get SO upset to come in for meals and snacks.

I had plans to get some food and a movie with Rachel, but with the way we talk, we missed our movie! So we rushed to another theater only to find out it was sold out - of course. So we got to my house to say good night to the boys and eat popcorn and malts while renting a movie off TV. The night shaped up!

Jason took the boys to the Y this morning again and then we all went to pick up groceries to make some lunch. We had a really fun afternoon at the Sharon Wilson Arts Center watching Seussical the Musical put on by the Brookfield Academy. The boys LOVED it and didn't move through the entire performance. We went to dinner afterward and I realized another new milestone. I pulled out a container of Jax's food while we were ordering and when we only ordered 1 kid's meal, we followed it up with "he has a special diet, so only milk for him". The waitress walked away and I looked at Jason and said, "you know she thinks Jax probably has food allergies... something semi normal!" why did this excite me? I don't know, but it feels one step closer.

T-ball basics

I had to capture this moment. Life is different grocery shopping with kids isn't it? Why is it that men are so cute in a scene like this vs women?

Getting ready with some Seuss books before the play!

Their first live musical play!

The boys were SO excited to give "The Cat" a hug after the play, but acted so shy for a picture. (I wanted to get a photo of them with this kid because he was SO talented and already has quite the little career going at age 15, ya never know!)

Thursday, April 19, 2012

A touch of toothpaste!

We've made a little bit (read: tiny) gain in the taste/texture area with Jax. I pureed some lasagna for him and left it a bit thicker with a tiny bit of grit in it. He had it for dinner last night and lunch today without problem - yay!
I also went out on a limb tonight and put a TOUCH of toothpaste on his toothbrush and told him he would only taste it and not eat it. He was very hesitant, but did great!

Yup, we're getting crazy up in herr!

I had to run an errand at the mall for Jason yesterday and I was terrified to go with the boys fearing a meltdown or one of them disappearing. I went out on a limb and brought the single umbrella stroller. Sure enough, they fought over who got to sit in it, of course Jax the aggressor won, but really I was able to wave a sucker in the air and Big B was all about it. So Brady pushed Jax (with my guidance and spare hand) and they never squawked once, huh! I went into 3 stores and were there for over an hour. What are the chances that that will ever work again??

They think I can't see them.

Tuesday, April 17, 2012

They complete me

I received a call back from the school district informing me that team has been put together to re-evaluate Brady and that I would be getting paperwork in the mail to sign and once that's received back, they'll set a date. My gosh... this is THE longest process in history. The lady (a different coordinator of something) said she hoped for Brady to be evaluated by the end of the school year and have a plan in place before he's 4, so we can be on a path to prepare him for kindergarten. (sigh) Clearly this woman is not privy to the conversations I've already had with the district coordinator. I think the original plans and coordinator will be in the evaluation and final decisions, so before I went all crazy and refusing to push Brady into 4k, I just left it alone.

I must say though, I'm very confused as to how an "early evaluation" is supposed to be helpful in any way. I mean, I waited for Brady to be in his school sessions for 6 months (actually I asked for extra help after 3 months and he did receive a one-on-one session for 25 minutes weekly), and now I'm going through this process. No matter what, Brady would've been re-evaluated for his yearly check, which is July, to be placed for the fall school year, so now he's what... checked in May for the following school year? What's the point? Now I'm shooting myself in the foot because instead of going through all of this once for both boys, I'm doing it once, and then again for Jax 6 weeks later. And might I add that it seems like there are a MILLION days off of school? Every single request gets pushed off so far because there seems to always be some reason for a day off. I mean, how many school days are there REALLY in those 9 months?

Anyway, I sat in Brady's speech session today and noticed how freaking cute this child is. I could be happy for the rest of my life with him riding in my pocket if he could fit. He is just such a loving child that he kept giving the therapist hugs and gigantic ear-to-ear smiles. He tried to sing and did everything she asked. You'd think a sticker was equivalent to a million dollars for the huge thanks and hug he gave. He got the sticker for finally understanding how to blow through a straw and making his cotton ball move (even with pools of spit everywhere). He screamed "YAY!!" Oh those dimples!
Oh man that kid is trying so hard. He may be a ventriloquist some day with how he speaks from his throat without opening his mouth :)

Whenever I pick up Jax, I park right up by the door, and now that it's getting nicer out, I roll Brady's window all the way down. Jax comes BUSTING out of the doors running and screaming. He leaps into my arms as if he hasn't seen me for a week and squeezes so hard. Now he always immediately pops his head up after the big hug and waves to the truck saying, "HI BUBBA!".

These are moments that complete me.

Notice the size/height difference in these guys. Brady's head is so big and is shaped just like Jason's! But yet Brady's hair texture is like mine and Jaxon's is like Jason's. They're always so opposite!

I don't care who you are, this is funny.
This was a photo that one of the speech therapists sent over from last month. One boy is missing, but notice how short MY bunny is in this photo - and he's my BIG one, ha! All of these boys are just sweethearts by the way.

Sunday, April 15, 2012

Big moves!

WHEW! We had quite the clean out going on in our house on Friday night and all of Saturday. We moved around furniture, put together a storage shelf for the basement and cleaned out all of the kid's toys. We moved all of their toys to the basement, and now the family room only has their coloring books, workbooks and books alongside all of my and Jason's home-office needs. We cleaned out a storage unit that was in the living room that held a lot of Jax's medical supplies, his vomit basins, rags and then their diapers and wipes. It felt AMAZING to not need all his medical supplies right in the room anymore. I have bins stacked in the laundry room by subject of all his needs (lung needs, GI/Feeding needs etc). We moved that storage bin into Jason's office in the basement to keep paperwork more organized that he needs at-hand.

I feel like my boys had a coming-of-age move this weekend. I used the family room as a playroom so I had them both upstairs with me to care for. Now that they can use the stairs without guidance and can be trusted at ear shot instead of always at eye-shot, it's a bit freeing. I can't put into words how it feels to not NEED a supply to tend to Jax every few hours. His monthly supply order has definitely gotten lighter. Some day it will be nice to think that he will only need lung-supplies (inhalers, spacers, nebulizer, pulse-ox, meds etc) rather than all the tubing, bags, formula, g-tubes, extensions, dressing, syringes and things that fill drawers and bins now. Some day... and SOON!

The next big move will be moving Jax back into his room when we give the boys their big-boy beds. We had to move Jax into our room for the first 15 months to do around-the-clock care, and then we moved him into the guest room next to our room where we could/can sleep in a bed next to him when he's actively sick. I'd love to have both the boys in "their" room and have Jax under the big "J" that has been on the wall since before he was born. When he is off his feeding tube and no longer requiring a nightly feeding (along with a beeping alarm to disturb Brady), then we will really have jumped a big hurdle. I'd love for them to share that big bedroom for their childhood like planned.

I find that most parents of multiples actually have their kids in the same room as babies and then split them apart as toddlers for sleeping purposes. We're always the odd ducks!

Anyway (wow, I ramble), we finally got our new TV installed from a friend on Saturday. We don't get cable hooked up until Tuesday, so we still can't even use the new one! Ce la vie.

The boys went with Jason to the gym this morning and dropped off a bunch of donations to Goodwill. We attended a 1st birthday party of some friends and narrowly escaped getting wet with a big thunderstorm that started 5 seconds after getting in the truck! Good timing!
We all relaxed together through dinner time and now that the boys are in bed, we need to get some work done. Back to school and normalcy this week, I think I miss that routine!

The boys are SO obsessed with playing T-ball. One kid will hit, while the other "fields". Here is Jason and Kurt joining in their game for a bit.

Jason helping Brady's techinique. (FYI - B can really hit the ball nicely!)

Jax fielding with Kurt. Notice they put Jay's left handed glove on Jax and Kurt took the right handed kid glove! We need a toddler/youth left handed glove for this kiddo.

The boys being... themselves this morning!

Look at these cute ladybug favors from the party that came with bug catchers, so cute!

The boy's area of the basement. One of the closets are theirs, and of course their beloved air hockey table in the other corner.

The old med-supply unit refurbed as Jason's office shelving! (Yes, those are a bunch of his old sports memorabilia from younger years on the wall. This room is ALL Jason!)

Wednesday, April 11, 2012

Feeding follow up

The kids and I went to the YMCA yesterday for the morning and had a good time, although it was SO busy with families having off for spring break. We finished the morning with going to the library, which was cute to see the boys sit next to other kid's at the little tables and listen in to their reading.

Today was Jax's feeding follow up. Jax gained a HALF pound - that's awesome! I felt hopeful going from the weigh-in area to the feeding room (not that Jax was doing a feeding, but that's where we meet to talk). The not-so-awesome-part is that even with a half pound of gaining, it puts Jax at 24.1 lbs. That's still considered "red zone", even for his height. That means that if a kid came to them weighing this at his height/age, they'd actually have to consider putting a temporary tube in (NG - nose) to give extra calories to help. So the point is, even though Jax gained, and even though he intakes a good amount during the day and even though his behavior is a lot better, he still has to have his full night feeding to play catch up in weight. With nice weather coming, he'll be more active which is more calorie burning, but he will have less sick days too. So we can't start the last weaning process yet, but he's one step closer.

I tried so hard to not have expectations, but with so much hard work for the last month, I guess I just wanted the grand prize at the end of starting that last process - instead, we have to remain the same and hope for more weight gain. How much weight gain, I have no idea.
I threw Brady on their scale just for a comparison, but he had his 2 shirts, fleece jacket, jeans and shoes on. His weight was 30 lbs, so I assume he's prob around 28ish and some change. So a 4-5 lb difference, that doesn't seem too far off. Ya know, I just don't know.
They want Jax to take advantage of the tube for now and gain some reserves so when he's off it and gets sick, it's not as hard on him.

I get it, and I totally agree with all of it. I just got my heart set on starting to wean him this month. We go back in 5 wks for the next checkup (May 16).
I admit that the easiest food to give Jax is that last feeding at bedtime. I mean really, I just hook him up and he goes to sleep. Around 9pm I take it off and poof - he just got a high calorie 8oz meal. I just want him free of "equipment" and I know that in the end, it's me being selfish and wanting him to be "normal".
He'll get there, he's so close.

The psychologist asked if there have been any new or different behaviors and it totally reminded me about his OCD things (I totally forgot at this point). I told her the new behaviors and she put them in his file. She said that children who go through new things that take control away from them will often act out in ways like I described. She's sees it in divorce and family changes, and of course in feeding disorders like Jax's that being worked on. She said that of course some of it was being the age of 3, but the best thing I can do is observe, take note, and just always be aware. She said that when it is a reaction to control, it will typically dissolve. She wants me to keep her updated at the next follow up, so I feel better knowing a professional feels that it's fine for now, but it's something to be watched,  so I wasn't silly for telling her. I mean, she did ASK I guess!

I told her I felt silly noticing these things because WHAT ELSE could possibly be wrong with my kids, and I'm sure that mother's throughout time didn't have to run to the doctor to report their kid's behavior. She laughed and said that in all fairness, babies like Jax and Brady didn't survive 20 years ago (mono/mono twins), so all of the possible "issues" I see, are technically a modern mother issue.
(sigh) I guess.

So, I'm still kinda just waiting on the side, not totally knowing a timeline, or complete expectations. I know what he needs daily to be in the gaining zone, and he's fed more than that with the extra night feeding, so I guess we're on a positive path. I had the nurse look at Jax's prolapse site and said that the GI doc said to not do anything about it since Jax would only have his tube for "months". But his prolapse is worse, so I figured I have them peek. The nurse observed it asked when he was expected to get his tube out. THE MILLION DOLLAR QUESTION, that I of course didn't want to look naive in asking, so she said she'd go ask them. FIST PUMP (I liked that she asked instead of me). She came back in and said that they said it would be a few months, so the nurse wanted to treat it with Silver Nitrate, and gave me instructions of what to do over the next couple weeks.
I will admit, I felt better after knowing the psychologist and dietician said "a couple months". So it very well could still be this summer. I mean, of course it could. Someone needs to slap me.

I did a phone-pic-dump, and found this cute photo of Big B.

The boys at the library yesterday.

Brady doing a puzzle and I noticed something. He loves to problem solve and do puzzles where you fit the shapes together to make a final shape or picture. Jax does not. Could they be any more opposite?

Blurry phone-picture of the boys this morning on the way out the door. Now Brady doesn't want to be without a hat.

The nurse had me take a shot of Jax's tube-site so I know the original size of the prolapse (the stomach tissue coming out). Sorry if this grosses anyone out.

I had to change his dressing and always find it weird what silver nitrate does. I have to put some cream on it 3x/day for the next two weeks. I can't wait to get this out of my babies' body some day. I know we're lucky to even have the chance.

*OH! And Jax's pediatrician called to say she is still setting up which labs an Immunologist is recommending that Jax have taken and tested. I'm hoping we can just wait until Jax's next hospital visit in May to take care of it then, but we'll see what she says when she calls with the details.

Sunday, April 8, 2012

Easter tour and life!

Hmm, I have to go back a few days to get up to speed.

On Friday, the boys had off of school for Good Friday, so Jason asked if we wanted to take a ride with him to his appointment in Illinois and stop at the Ikea store (we need a storage bin in the basement to move most of the boy's toys down). So we came along and let the boys play at a playground while Jason had his meeting.

We were bummed to see that Ikea only allowed kids in their play area if they are over the height of 37" and were required to be potty trained. Jax isn't quite 36", and obviously neither are potty trained, so they tagged along with us instead. They did great until the last 10 minutes. Jax started up on his weird little anxiety show he's been doing lately when we're out at stores. He will suddenly be VERY aware of where Brady is and if Brady steps ahead of us, or lags behind, Jax SCREAMS at him. We have to remind Jax that WE are his parents and will take care of Brady. But it escalates into a complete and irrational breakdown. I had to carry Jax out kicking and screaming and once he was outside, he turned off like a switch. It is SO strange! He just can not handle Brady being a certain distance away and just goes into an insane breakdown.

There's also been some little O.C.D. behaviors of Jax at home that are starting to make me notice more than usual and wonder if I should bring it up to a therapist - but which, and why? (so listen up mommies, and please give me your opinions). Jax HAS, and I mean HAS to walk a certain way through the house to get upstairs. Even if we are in the kitchen and there's an easy way to the stairs, NO, we have to turn around and walk a certain way through the living room and through the family room. And the entire time, Jax has to be holding my left hand. When we get to the stairs, he MUST switch hands and then walk up. If it's night time, Jax HAS to shut off Brady's light and close his door. If this does not happen, he comes unhinged and totally shuts down. So... normal 3 year old quirk, or is it something that makes you go 'hmm'? I'm kind worried of looking hyper aware of everything all the time, so please give your opinions and advice on this through either the comments here or emailing me, thanks! *moving on*

On Friday night, Jay and I went out with our friends (Janel and Steve) for a birthday dinner and some celebrating. Steve's sister was home from college for the holiday and sat at the house while the boys slept - yay, some time out!

On Saturday, Jason sponsored his friend Chuck for a confirmation, so he was in-and-out of the house for that and the boys and I pretty much relaxed and did busy work around the house.

We did an Easter tour of family today (Sunday) and are now home recouping. We went to De Pere for brunch with some of my family members and then went to my mom's for an egg-hunt and bunny stop with baskets. On our way out of the restaurant I ran into a DEAR old friend that I grew up with for years. She was there with her family and our moms were just dying over the fact that they both still look the same (how cute is that?). Anyway - HI Bri and Patty cakes, you have such gorgeous families!

At my mom's house, the boys got some Spiderman fishing poles and tackle boxes - um, these may be their favorite toys to date. We tied little rubber fish on the ends, so the boys "fished" all day at every stop after this! They will LOVE using these at the Garber cottage this summer and hopefully get out on a boat with Bumpa!

We headed over to see some of the Klingeisen family where the boys joined in (aka - butted in) on a kickball game out in the yard with a lot of extended cousins. We then went to see Grandpa Lettenberger, where the boys showed off their fishing poles to an excited Grandpa (this side of the family owns a charter fishing company).
Jax surprised us ALL (Jay, Papa, Grandpa and I) when he mumbled something about a bathroom standing in the hallway. I said, "did you say you have to go to the bathroom??" He said YEAH! and he walked down the hall. We all starred at each other in disbelief and Jason said I better go check to see if he's actually serious. I got up and he was in the bathroom by the toilet. Ok... let's see where he's going with this. I pulled his pants down and took off his diaper, and he peed all over my hand. HILARIOUS!
This was SO cool (after I washed my hand) that he had his first real attempt at actually going potty. What a little man!
I think we'll actually SPRING into action if he ever brings it up again! Yup, I'll chalk this up to a slight Easter miracle ;)

We are all home now and the boys are definitely tuckered out in bed and Jay is prepping to fly out early in the morning. The boys have off all week for spring break and I'm trying to decide what we should do! If it's warm, I think we'll do a tour of parks and maybe even the zoo (I *think* I can handle them there at this age alone now) otherwise we may do some bouncy places and the YMCA. We shall see!

This would be Jax cuddling a piece of bread. Yeah, I don't know either.

Then licking it. Maybe he likes the texture for sensory??

The boys loving some Easter goodies that the Garber family sent them. Spiderman coloring books, woot woot! And yes, Brady still wears his cape each day and sleeps in it most nights at well.

Jay and I out on Friday.

My cousin Alyssa and I at at Easter brunch. She and my aunt were visiting from Kansas.

My aunt, my mom and my grandma!

The boys during the egg hunt.

how cute are these tackle boxes?

Bumpa giving a lesson.

Brady and Jay loving it too.

Marley with the boys.

The boys with some Hoffman cousins.

Jax lovin' life!

The boys with Grandpa Lettenberger.

Tuesday, April 3, 2012

Capes and Hats

The boys do the most random things. Today Jaxon was SO upset as we were leaving the house to get to school. He was besides himself whining until I just had enough and told him to show me what he was freaking out about. I put everything down (his backpack, his snack pack, the bag of 50 envelopes I had prepared to mail for work and my purse) and was lead upstairs to a closet. Jax wanted a hat that his Nana got for him at Disney World a year ago that he's never worn and I had been saving for when it would fit him. Yup, he wanted this random very specific hat to wear to school.

When I got back downstairs, Brady was standing at the door in his super hero cape that he had gotten at Christmas (good choice Shanns). He loves to play with it off and on, but apparently today he was wearing it to his speech therapy. He decided yesterday that it was never coming off his body again. Ok... my guys decided to be eccentric today.

Brady had a good session in speech. I ask to sit in on his individual sessions so I know what to work with him at home. Today he had to take mini marshmallows off a pretzel stick with his mouth. When he would wrap his lips around the pretzel stick, he had to say "mmm" and when he pulled the marshmallow off and released, he said "ah". In order to get another one, he had to say "ma/mo". It took him a few sticks of treats, but he started to get it at the end. He has such a hard time putting his lips together and coordinating sounds from them.

I received a call back from the Early Childhood coordinator later in the day and she said she had a group put together to completely re-evaluate Brady and his progress. I should be getting a call back after the district's spring break (so another week and a half to find out when that will all happen). The district coordinator told me she did speak with the speech therapist(s) and I guess they agreed that a team should re-evaluate him as well. I have NO idea why that took me back for a moment because Brady is not progressing, but I guess it was always just "my" opinion up until this point. The coordinator said they need to see how far he has progressed, and if it's not acceptable, they need a team to really look at what things ARE progressing him, and what isn't. In addition, they have to make sure there aren't other problems that may be contributing to his issue(s).

Ok... now I asked for all this, but ick, no Mama likes to hear that. I guess I just wanted them to say, "yup, he's not catching on as quickly as we thought he would, let's add xyz". Instead, it kinda sounds like, "yup, he's not catching on as quickly as thought, let's see what may be really wrong".

Don't you love the inner-dialog in my head?

If you watch You-tube videos of kids with "verbal apraxia" the kids who are 3-4 actually sound like Jaxon, but actually have more words. I can't find any that sound like Brady, or I should say, Brady can't say nearly as many words or even as clear as the videos, so I'm a bit confused. I think I just really need a sit down to review Jax's year with his teacher and therapists and of course to have Brady's re-evaluation.

On a positive note, Jax's eating is really coming along. He will still never "ask" for food or even say yes when asked if he wants to eat, but the behavioral vomiting at the beginning of the feeds has totally gone away now. He will only gag if the food isn't thin enough. Now to get him to cover his mouth when he coughs is a work in progress!
I found a fettuccine alfredo meal that has 35g fat and 365 cals, so divided by 3 (that's how many meals for him I get out of it) it's an awesomely chunky-monkey meal and he LIKES it! I'm trying to stuff this little elf with this, ice cream and PB&J's as much as possible! (all as puree of course)

He's eating a little more at each feed too, so it's nice to see that finally coming along. He has his next follow up next week Wednesday, so let's all cross our fingers for a weight gain!
Oh, and oddly, he's more willing to drink more volumes of his milk again. He's so hard to understand. In the hospital he drank most of his meal and then would take a few bites of food. Once home, he refused the milk and would only eat. Now he's finishing with 2-4 oz of milk after 4-6 oz of food - yay!

No progress on the potties, but I'm sure you'll all hear Jason and I cheering from your homes if one of them suddenly decides to pee in a potty! 

Otherwise it's business as usual here. Jason comes home tomorrow from a tour since Monday and I've been plugging away at work and keeping the boys as entertained as possible!

The boys LOVE playing catch with the football with Jason. Jax is especially obsessed and he's actually catching it and throwing it back.

After about 5 throws, he caught this one! I asked Jay to use a Nerf ball so it would stop smacking his face and I was shot down and told that the real thing makes him tougher. (sigh)

Some coloring time. And the beginning of a 2-day wear of the cape. In fact, Brady is currently sleeping in the cape as I type this!