Friday, November 30, 2012

Pluggin' away

Wow, this has been a quick week. We're just plugging away at home here. The boys are taking their meds for their ear infections. Jax hasn't been keeping down his breakfast most days, but that's pretty normal when he has an ear infection or virus. He is controlling his asthma even with a cough in the house, so that's a PLUS!
The boys have been loving the Wii system playing things like bowling, tennis and baseball. Great gross motor therapy, right? Brady can't figure out the swing/button timing for bowling - no matter how many times we show him, so that's been slightly frustrating.
Otherwise, Jax has been singing and telling us all about Santa and Christmas this week. As much as he can with his limited vocab, but it's so freaking cute. I told him the story about Baby Jesus and showed him the manger-scene. When Jason came home, I had Jax show off by naming the baby in the scene. He calls him "BeeBee Geesuh" and Brady will yell, "GEE GEE!!!" for baby. Gotta love their enthusiasm!

I have a weekend-long date with the boys this weekend since Jay is going to Vegas to play softball. Apparently Jose Canseco is on his team?? I will need photographic evidence on that one.
I need to get the boy's hair cut, maybe let them see a matinee, and maybe visit a small Christmas festival that a friend of mine is throwing this weekend.
The boys and I are going to keep Rachel company if she hasn't had her baby yet, otherwise we'll be visiting the new baby if she IS here! Yup, a baby girl is on the way, woot woot!

Brady will 'read' an entire book in his turkey gobble - too cute!

The boys playing their games.

Jax will memorize words on a page and go back and 'read' the book to you. His memory is awesome! He comes home from school with small projects and 'reads' the word on each page to us. Most of the words he says wouldn't be understandable if you didn't see the word on the page, but he's definitely saying them!

Monday, November 26, 2012


Today's appointment at the ENT was a bit surprising. First of all, let me give the boys props for being SO good at the appointment. They each sat in the chair and allowed the doctor to poke and prod both of their ears, mouths and noses without any resistance - thank goodness!

The boys each have the exact same problems. They both have ear infections right now (um, what?!) and they both have Hypernasality - Velopharyngeal Dysfunction (VPD).

First, the ear infections... I was shocked! I know the boys started a cold this weekend, but there have been no fevers or even much of a runny nose. The boys were active, happy and being their crazy 4 yr old selves. I felt like the worst parent in the world! The doc said that he believes there may be drainage issues, and that the boys are used to the feeling in their ears, so they don't act differently - so there's no way to know until it gets to the point of a fever or lingering cold.
He put them both on Amoxacillin for the next 10 days, and wants to re-test their hearing and have a re-examination in 6 weeks. If the problem continues to be chronic (he will check again 6 weeks after that) we will discuss tubes. He was actually surprised to learn that Jax passed his hearing test 6 weeks ago. He thinks that a drainage issue lends to a lot of hearing issues, which then lends to speech issues. If a child goes in and out of proper hearing, they have articulation issues. So if this is a problem, clearly tubes will be necessary.

The other issue of the Hypernasality is trickier. We don't know to what extent of it is adding to the boy's speech issues, and we don't know what exactly is creating the malfunction (length of soft palate or palate not closing all the way). So rather than performing a scope on the boys today, only to have to do it again, the doctor decided to only do one scope with a cranial-facial team. There's a team at Children's Hospital that specializes in children with cleft palates. Now obviously the boys don't have cleft palates, but they speak very similar to that of a child who does have one. Oddly, this is what the boy's teacher told me a few months ago. I've told a few people over the past 2 years that Brady has an underlying 'sound' to him that always really bothered me and seemed off, but I didn't know how to even describe it.
So this team will meet with the boys and decide who performs the scope, and if a speech therapist will also be on hand to help during the process. I believe the scope is done on the child awake, and it's a camera that goes down their nose. The camera will watch the soft palate perform during speech exercises.

The doctor asked if the boys have food come out of their noses during drinking or eating and I said no, but Jax often vomits out of his nose (he did this morning). After I left, I realized that Brady used to reflux out of his nose as a baby - so I wonder of course if this is a reason. He had the boys say particular words, and the moment they said them, he nodded and said he can hear it very easily. (Hear what? Air escaping?) The two women in the room with him both nodded in agreement that the boys definitely had Hypernasality like their speech therapist had thought.

I told the doctor that Brady was diagnosed with Apraxia, and Jax may too in a few months when he has his appointment, so wouldn't THAT be the speech issue? He said that Apraxia can definitely be another symptom of VPD because sometimes the soft palate doesn't close all the way due to a neurological issue - which is what Apraxia is, so it all sort of can play together. Apparently many people in a family can have Velopharyngeal Dysfunction with the palate not closing all the way, but they can work through it with therapy by training the palate to close enough so that the dysfunction is only detectable with small articulation problems - therefore a thorough exam is never sought out. Also, the possible drainage issue that the boys have is apparently something that often happens with VPD, which I'm not sure how/why - that was a lot of info to take in by myself.

I'm supposed to hear from the team within a week. So I wonder what will come of all this. They will either say the problem can be worked through with proper speech therapy, or surgical intervention needs to happen.

Saturday, November 24, 2012

Thanksgiving wrap up

Our holiday season has started off... quiet. We always spend Thanksgiving with my mom and Les, so I knew our holidays would be different this year. My mom actually worked on Thanksgiving to make up hours that she'll be missing when we go to Texas in a few weeks to visit my brother and his fiancee for Christmas and her birthday. Jason wanted to hunt on Thanksgiving morning, so he left in the middle of the night to head up and I drove the boys up around lunch time to meet him. We visited his aunt and uncle's house with the Lettenberger-clan and then came home. It's always nice to see family.
I'm hoping that a changed-up Christmas won't make it feel so empty without Les...

We've been trying to soak each other up with time around the house since the schedules have been so busy and Jay will be gone again next weekend. We took the boys to give our friend Shannon a hug at the visitation for her father's passing. Our heart hurts for her and the family, especially during the holidays like this.

The boy's excitement over the holidays has kept the spirits up a bit. We got all our Christmas decor up inside and out. The boys really loved decorating the Christmas tree, and they may actually not knock it over or break tons of ornaments this year. Jax informed us that Santa comes 'down down down' the chimney to come into the house. I'm excited to watch the old Christmas movies of Santa, Rudolph and Frosty with the boys so they get a good background story animated to help them understand. It's already in their stockings from St Nick and they don't even know it yet! (Yes, we're from the midwest and are German, so we celebrate Saint Nicholas on Dec 6 each year - he's not Santa, and actually did exist. Wait... I believe in Santa, make no mistake! ;))
And yes, Jesus is introduced this year as well. I have a Nativity scene that I purchased when we were at the Vatican in Rome and plan to tell the story to the boys. Does anyone have a good recommendation for a video to help them understand better? I don't want to confuse them, or obviously let them think the Christmas = Santa/presents. Any recommendations would be appreciated!

In medical-testing-news, I talked to the Genetics Counselor about some of the tests the boys took. The thyroid and growth factors all came back normal, as well as the bone age X-Ray. Huh... we all actually expected the bone age to come back 'younger', meaning the boys had some catch-up growth still coming, but no, the test said the bones have grown to their exact age. That was the only test the genetics team thought would come back a bit off. While a normal result is ALWAYS wanted, this one kinda stumps us. So, it will be useful info when we meet with the Endocrinologist on Dec 20. They will determine if the boy's growth/height are an issue or not.
None of the DNA or Metabolic Profile tests are back yet. Those will still probably take a couple more weeks, but we're expecting (hoping for) normal results.

The boys will see the ENT on Monday, and Brady is supposed to get his hearing re-checked on Thursday, but of course, he's started a cough and runny nose this weekend. Boo! He's been so healthy the last few weeks, other than a cough, but if his nose keeps running past Tuesday, I'll have to call and reschedule the hearing test again. We shall see.

Thanksgiving done the Lettenberger-style back home. Here's Jax pretending to deer-hunt on a video game...

Brady up at the bar by the ladies (with his water and pretzels)...

Hey dude!

Then I found Brady learning a card game with Aunt Sue and Aunt Cindy...

Livin' the dream Big B! The boys just LOVE all the attention, they get so much love.

The boys showing off all their Thanksgiving crafts. They actually made place mats with an entire dinner, which makes Jax's day to have 'fake food'. Notice Jax's placement of feathers on his hat and his bird on the ground - compared to Brady's. Yup, Jax is really working on his coordination! I can always tell which project belongs to which kid - love them!

Tuesday, November 20, 2012

Formal Diagnosis for Brady

"Speech Apraxia/Coordination Disorder"

The Child Development Center called me this morning saying they had a speech pathology cancellation and would like to see Brady (his original appt was set for mid-Jan). I had a playdate planned for the kids this morning (they don't have school on Tuesdays) so we cut the date short, and headed over to the center.
The appointment lasted three hours, but the boys stayed pretty entertained. Thank goodness they play movies and have toys in the waiting area, so Jax was pretty entertained while we waited through the testing for Brady.

The therapist was super nice and very informative. She first noticed how VERBAL Brady is and asked if he tries to approximate most words. I said he is always 'talking', but it's not very understandable. She kind of made of face and said she wondered if he had a phonological issue rather than a disorder, and that of course would be a lot better. So she sent Jax and I out into the waiting area while she gave Brady his test. Jax doesn't have his appt set until Jan, unless there's a cancellation before that too.

We were called back in and she told me that he did in fact definitely have Apraxia with a lot of coordination issues. She does however believe he WILL speak with a lot of hard work and hopefully the diagnosis will get him more help. I signed a release for her to call the school therapist to give the official diagnosis to be noted on the IEP (an IEP is a school plan for kids with extra needs that require therapy from the district). She said he seems very bright and her evaluation of speech comprehension was a score of 86. Normal for his age is 85-115, but as long as it hits anywhere in that range, they're considered normal since the score can change considerably each day depending on mood, concentration etc. She said his speech itself was in the 60s, which is a huge Apraxia indicator (can understand, but can't physically say it). She looked at me and said she didn't assume the extremely low score would surprise me. No, it didn't.

We need to work on core words, and only sounds in therapy for now. She suggested that we put up 5 or 6 core words on the fridge (pictures) and repeat the words constantly for 2 weeks. This will eventually train his mouth how to say them, and that will be his catalyst - which is how Jax really started to take off. Repetitive core words - that is our goal! She suggested the words - Whoa, me, down, hot, shoe and out to be the first set given his ability. Also, she suggests the "Kaufman Approach" for therapy, so I'll be seeing if that is the current approach at school. She gave me her notes that look like a foreign language a bit. All the sounds he is great at, awful at, emerging at. This lady is like the queen of therapists I think.

I asked this therapist for a second opinion on the adaptive tool for Brady to use. She said absolutely, and it will not deter him with the speech. She thinks hearing the word he is saying in his head will only help him, and once he can say it, he won't use the tool for that particular word. She also thinks he'd only need it for the next 6m, maybe a year to be where Jax is at. (I hope I don't regret typing that like I do some old posts years ago about Jax losing his tube.)

I asked if it were possible for Jax to have the same diagnosis, even though his speech is more evolved. She said he most likely does, he's just at a different phase - and it's very genetic through males... so yeah, that whole twin thing most likely is in play. She was surprised though that the 'healthy' guy of the two has the worst case of the disorder. She said that medical complications will usually push a child back pretty far, so that is very odd. Brady is super healthy other than some eczema. I guess it's another random unknown!

So let's hope this is the only diagnosis that Brady receives from this whole process over the next 2 months. I really do have my hopes set that the whole ADHD thing will be evaluated and recommended to be on hold for further checking when they're older. Maybe the speech is a big component?? We'll see I guess...

In other news, my friend Shannon lost her father this weekend - we actually got the news while out together at a restaurant on Saturday night. Our hearts are with her and her family this week while they go through the sad journey. It feels like the last few years have had so much loss for so many people that I love. I'm ready for the next one to start and to bring some peace for everyone.
The good news is she feels he WILL speak, but definitely needs more help than what he's getting, so hopefully the diagnosis is helpful with that. He's a SUPER verbal kid and approximates everything, he just can't actually say much that you'd actually understand. The therapist said it's called "jibberish".

Read more:
The good news is she feels he WILL speak, but definitely needs more help than what he's getting, so hopefully the diagnosis is helpful with that. He's a SUPER verbal kid and approximates everything, he just can't actually say much that you'd actually understand. The therapist said it's called "jibberish".

Read more:

Friday, November 16, 2012

Caught kissing

This was a fast little week. The boys are doing well and are all packed up ready to have their dude-weekend with Daddy back at home for deer hunting weekend (no, they don't go hunting). They'll be attending Jason's cousin's wedding tonight, and then at Nana's for the weekend.

I have my friend Tamlyn visiting from Florida for our annual 'Deer Hunter's Widow weekend'. We have a nice little weekend planned of shopping, movies and dinners with other friends. We'll be up in Green Bay tonight to have dinner with my mom and Sidney and then a movie with Rachel and dinner with Shannon tomorrow. Then back to the grind of real life come Sunday night!

Oh, and I forgot to mention a part of the teacher conference last week. Jax was caught kissing a girl under the table. Yup, he did. I kinda enjoyed hearing something so normal. 

I hope you all have a great weekend!

Tamlyn and the boys

Tuesday, November 13, 2012

Need advice!

Thank you for all the comments here and emails that I received from the last post - you are all so sweet, and wise. One day at a time while we go through this journey.

So, I haven't heard back from any of the Genetics tests yet, which I'm slightly surprised. I was told I'd be contacted as they came in over a 6 week period, so I expected the X-Rays and urine tests to be back within 2 weeks. I may call by the end of the week if I don't hear back.

I received the huge packets of paperwork for the Child Development Center to keep me nice and busy over the next week. I'm sending along paperwork to the boy's teacher and speech therapist to school tomorrow. I noticed that once they complete the paperwork, they're supposed to mail it directly in. Boo, I wanted to spy on what they wrote!
I need to look and see if I made copies of the paperwork that I sent into Genetics since they want to know the ages of every single development - oy.

Otherwise the boys are great. Brady's random cough is subsiding and only kept us all up for 2 nights, but thankfully Jax never started (thank you daily steroids!).
We put up some Christmas decorations outside last weekend because it was beautiful out and in the 60s (and already down into the 30s this week), so our neighborhood always looks funny mid-November when we all want to take advantage of the decent weather, but we don't want Christmas decor up (let's have Thanksgiving first!). So we have the big wreath up that requires a ladder, lights that we're not turning on yet, and... pumpkins and scarecrows... it's a twist of the holidays for another 10 days.

The boys have been running around loving the outside time with their neighbor friends and they even had a playdate later on Saturday night, while all the parents had some snacks and cheer. Going down into the playroom after 7 kids ransacked it for 2 hours is a treat, ugh. But they had so much fun, and that's most important.

Ok, so this leads to our current dilemma. How do you keep your kids from DESTROYING their playroom every time they play? Each time I take a shower, I let the boys play in the basement, and in a short 15 minute time frame, it's completely trashed. And by making the boys "clean up", they may put something inside something, but then they just play.
We started telling them they could play with 2 or 3 toys, but then they'd have to put one back to take out another - nope (suggestion at the school meeting last week). It's just NOT working, and it's such a chore for us to properly clean up such a giant mess each night. What should we do?
I love letting them have their independence and play in their designated area. They play so well together and I Looooove listening to their pretend play with each other while I'm in the kitchen (we have an open concept to the finished basement). So what should we do? They need to learn responsibility of how to properly treat their things, but they just.don' We don't expect them to put everything away completely right, just SOME effort, and not a complete tornado - especially after we JUST gave rules of how they could use the area. (sigh)
Jason threatened to give away any toy that they leave out tomorrow. And he meant it.

*I'm sorry for the lack of photos. I've lost the battery charger for my camera, so it's useless! I need to order one, so I'll try to capture some on my phone for the next post.

Friday, November 9, 2012

Did not expect this one...

I've gone back and forth of how I wanted to present this post tonight. I don't want to be whiny, or negative or gloomy. But I must say, I just feel slightly defeated in general this week. I've had some stressful and overwhelming days, like everyone has from time-to-time, so I was kind of looking forward to the boy's school conference on Thursday evening. I speak to the teacher and/or the speech therapist at least once each week or so, and they always rave how well the boys are doing, thriving and generally coming along. We see the progress at home in many different ways.

It's no secret that Brady is really struggling with speech, so I knew his report in that area would say he's not meeting goals, but everything else would be great. Which it is!
Both the boys are regarded as extremely good natured, kind and even polite. Jax will most likely graduate from OT and PT this year - Awesome!
Now, of course they are typical 4 yr old boys who bounce off one another and can be totally naughty and make us pull our hair out, but overall, they're great and we're so lucky! I mean, they've never even had a tantrum at school, or had a fight with another child, or anything like that... so that's why I felt like I was totally hit by a bus when I was given "the talk".

The teacher, the speech therapist and even Jax's Occupational therapist all sat looking at me in a very kind way and gently told me that they all suspect the boys to have ADHD and would like me to have them further evaluated by a medical team.

um.... what?!

I felt like the room was spinning, and while I didn't have the same sickening feeling that I've had in the past when a doctor would give me bad medical news, this still felt like a punch in the gut. I found myself starting to grasp at straws and telling them that they just told me how great the boys were and how they weren't sassy or had tantrums... I felt like the mom who refused to believe something 'bad' about her kids and I was immediately aware that my defensiveness looked ignorant. So I just sat there.
They said I had the wrong idea of what ADHD was, and that while some children who have it may have disruptive outbursts or be aggressive, that's not how all children with it are. Also, this was not a diagnosis, but rather their referrals for further testing because they all suspect it.
The main reasons for their concern are their impulsiveness. They feel that the boys will jump up and plow through everything and anyone to get to the next activity without regard to their own or others safety.
Also, attention - which I honest to God thought they were pretty good. They said that when they sit knee-to-knee with the boys to work with them, the boys can't focus on their face and the shiny object in the room always wins out - even when specifically asked to look at the teacher.

Ok... that all sounds like things that need to be worked on. But does that mean a developmental disorder of ADHD?
They asked if there were any particularly tough times at home that reoccur and the only thing I could think of was dinner time to bedtime is slightly chaotic. The boys are totally bananas and talk, yell and run so much, that Jason and I just can not have a conversation - but isn't it like that at everyone's house with two four year old boys?? Yes, we repeat ourselves NUMEROUS times and many times they act as if they have no idea what we're saying or just said, but again.. I assumed it was the age in addition to their delays. Do I sound naive to any of you reading this? Please tell me!!

I was told that they may have calmer demeanors because of their diet and routine at home, which are actually two factors used to treat children with the disorder. I can't even wrap my head around this for some reason... I mean, I know that food dye and fake sugar are major behavior triggers in children and we really limit all of that, but... but... omg, I just don't know! 

Now, I know that we're in a heavy "find out what's wrong" phase right now, and obviously we want to know so we can help the boys be the best they can, but I really didn't expect this one. Even when the Geneticist told us last week that the boys were in the high danger zone of having learning disabilities and/or ADHD, I just felt sad about that thought of a learning disability - I swear ADHD wasn't on my radar.

So... is ADHD the end of the world if it is something going on? Of course not - but in my world, it's a total blow to us right now. The boys have SO much going on to overcome to even be on the same playing field as their peers (even being held back a year) that this is just one more possible hurdle that breaks my heart into pieces.
The boys will be evaluated at the Child Development Center over the course of the next two months (remember all those set appointments?) and this center specializes in all of this, so clearly it will be addressed by them. The teacher and the therapists said they'll be filling out the paperwork from the CDC, so they didn't want me to be surprised to see their suspicions of the disorder without this prior discussion.

So we'll see. Clearly a developmental pediatrician, pediatric psychologist and the reports from school AND HOME will all figure out the puzzle. The school speech therapist told me that I need to be prepared for a dx of Apraxia from them, which I am prepared for. She said that she's so proud of Brady for getting the 'mmm' sound out, but clearly, after 2 months of work and getting one sound out, he needs a lot more help to start being to effectively speak and communicate some day and the days are counting down to 4k quickly.
Which lead us to the discussion of an 'Assistive Technology' referral. Brady will be evaluated to see if his classroom can have an assisted tool to help him speak and communicate. The therapist told me of a few apps that I could purchase to download on an Ipod or Ipad that Brady could use. He would learn the program to push buttons with pictures, and it would speak for him. I checked out the apps today and they are rather pricey, so we'll see what the Assistive Tech person suggests. The therapist gave me a hug and told me she was so proud of me for considering the tool because Brady really needs it, but sometimes parents have a hard time accepting its necessity (because it's seen as such a 'special needs' tool).

On top of this, I received a call from the Endocrinologist department for an appointment. We were able to find a day that wasn't already filled, so that's set for mid-December. I think my family may run away come February.
Yup, you'll find us on a beach somewhere.
So, I have two question for all of ya'll out there. Are your kids 'coughing' more this season? Brady is on his third cough this fall already (they both started colds today) and I just find it odd.
And second - do I sound crazy in this post?

Good job Brady! (he drew Daddy)

I had to draw the circle for Jax, but you can tell what he was drawing!

Wednesday, November 7, 2012


I seriously can't even bring myself to type out some of the scenarios that happened today. Ahh, who am I kidding, get this... I am on hold with Microsoft trying to get my new 'Office' software to work while gathering up the boy's backpacks and bus harnesses. I suddenly hear "uh oh" and sure enough, Jax spilled an entire cup of chocolate formula all over the table, himself (in his school clothes) the floor, the chair and of course, the rug. I scramble to grab towels and pull him out of the mess and put the phone on speaker so there is elevator music blaring at this point. Brady comes running into the kitchen yelling 'Guh!' (bus - which was 5 minutes early) so yeah... a big old 'ugh'. My cell phone rings and I see it's the Child Development Center - I've been waiting for this call for months, but they'll just have to wait. I can hear my computer beeping with work emails - aaaaahhhhhh! Yeah, it's been that kind of week.

So I got the boys off to school and ended up with a total of 68 minutes of time with Microsoft. Seriously, who HAS that kind of time to figure out their Office applications?? I answered some work emails, got a little more work done and called the Child Development Center back, and wow... that almost blew my mind. The boys have to attend a total of EIGHT appointments for the assessments. Four each, on top of the already chaotic schedule of appointments they have set, aaaand we're waiting to hear back from Endocrinology soon to set up an appointment. I felt so bad for the lady on the other end of the phone because I was clearly slightly unhinged throughout the conversation. So here is what I figured to be the boy's schedule - not including chiropractor and feeding therapy:

Nov 26 - ENT both boys at Childrens Hosp
Nov 29 - Hearing re-check for Brady at Childrens Hosp
Dec 4 - Developmental Pediatrician at CDC for Jax (Jason and I must both attend)
Dec 6 - Developmental Pediatrician at CDC for Brady (Jason and I must both attend)
Dec 7 - Pediatric Psychologist assessment at CDC, 1pm Jax --  2pm Brady
Dec 10 - Feeding Team check in for Jax at Childrens Hosp
*We're in Texas for Christmas with family Dec 14-17*
Dec 18 - Pediatric Psychologist testing at CDC for Jax
Jan 8 - Pediatric Psychologist testing at CDC for Brady
Jan 15 - Speech/Language Pathologist assessment at CDC, 9:30am Jax, -- 1:00pm Brady

*Somewhere in all this madness I should start receiving some of the genetics testing back one-by-one, and don't ask me how an Endocrinologist is supposed to get them in*

I have paperwork coming from the CDC that has to be back right away. Um... it's reports for the boy's therapists, teacher and of course complete medical profiles of all of us and then some. I swear everyone thinks we love paperwork and would love 100s of pages due in an extreme short amount of time. Jason leaves tomorrow until late Saturday night for a conference in MN during a busy work-project, so maybe that's why I'm a bit edgy with all this, but I reeeally feel like this is all too much. But what do I do?
I feel like we'll finally have some solid answers about things the therapists have been questioning now for the last couple years, so I feel like this is all NECESSARY, but wow... it feels so overwhelming. I guess I'm so used to the chaos of Jax-appointments, that when I add in Brady, it feels like 100 balls in the air. We just need to keep our eye on the prize, and the prize is to know that we checked every corner possible to help the boys.
Ok, enough whining on my end. I have the boy's school conference tomorrow, so I'm sure that will put my spirits up since I think they're doing well and loving their time there - I'll be sure to report back!
No one has asked to go to the bathroom yet, but Brady is doing well with being able to pee when placed on the potty! Jax was SO upset about not getting a star, that he actually peed this morning on the potty - a little competition may be good here!

Sunday, November 4, 2012

The World of Potty Charts

We're preparing to head back into a busy week (read: Jason has been working in his office since the kids went to bed, so he is ready to go to work tomorrow... it's kind of how it goes).

I was able to get urine samples from the boys on Friday to run back to the lab. Brady was able to actually stand over the cup, and go a bit for us while standing in the tub. We couldn't believe it, but he did, and even though it was just a tiny bit, the lab tech said it should be enough.
I dug through our medical supply bins and found other urine bags that had a much smaller 'tape area' (infant vs pediatric), and then I found a large box of adhesive remover pads from when we taped a cannula to Jax's face, and also when we used the stickers on his tummy to hold his tube in place when he had grabby-baby-hands.
With these two found treasures, I was able to obtain a sample to freeze, so we were off after lunch and mission accomplished. I wonder if we'll get any lab results starting this week?

The boys and I headed to the craft store after stopping at the lab. We got supplies to work on a school project of turkey feathers, and then we also got supplies to make a 'potty chart' for home. We think it's time now that Brady has shown a bit of readiness.
We made our turkey feathers, and then we made our chart and talked all about it. When Jason came home, Jax informed him of how he'd get star stickers for going peepee or poop and they add up to prizes. We felt like we may finally be on the right track.

Aaaaand neither boy wanted to use the potty either Friday night, or all of Saturday. Finally on Sunday, Brady went pee just a tad on the potty and earned the first star! Jax was so jealous and he tried hard, but nothing has happened yet, but he'll get there. He did fart once and insisted he get a star for it... yup, we laughed pretty hard!

I got out of the house and went pre-holiday shopping with Rachel on Saturday afternoon, and we even finished up most of her baby registry too. When she came in the house, Jax ran into her arms yelling, "Aunt Rachel!" in his own elfy-way. I love that he is really putting names to people now. We go through pictures of family a lot, so I'd to see how the memory is during the holidays this year!

Jason and I packed up the boys and headed over to Kurt and Mary's house to see their brand new baby boy named Ethan last night! He is just tooo cute for words.
The boys played outside today in the decent weather and there were about 50 games of 'hide-and-go-seek' going on while I was cooking dinner.
Jason was updating all our software on the Mac since it hasn't been done since we got the computer 5 years ago and it's been really slow lately. Updating was a success... but our applications that don't jive anymore is not a success. (sigh) It will be a long day of figuring out my computer so I can work tomorrow when the boys are in school. Ugh, Lions and Snow Leopards and the wrong year of Office will give me a nightmare tonight.

This is our world right now... when the boys earn 10 stars, they get a prize.

Jason with Baby Ethan.

Little boy craziness!

Thursday, November 1, 2012

Genetics appointment and testing

We had quite the interesting morning with the Genetics counselor and specialist. First I'd like to say how SUPER nice they were and extremely thorough. They also did their homework (which made all the initial paperwork not seem for nothing) so while we had to talk a LOT before the physical exam, we were giving more detailed information about the events that they knew about (pregnancy, birth, illnesses, delays, growth etc).

The specialist came in, and boy, this man was friendly. His first sentence was, "well, they sure are cute, so that automatically cuts out 100s of possible issues". I didn't understand what that meant, but later - because they discussed the cuteness so many times - they explained that not all, but some of the disorders have a physical feature that can change the face just enough, to look 'off'. Not to say that those children aren't cute (I think they are!) but he just meant cute/handsome in the classic meaning. Simple things like eye or ear spacing and things like that. He said the only outward physical feature of something being 'off' was their size.
The good news is that they ARE growing, but they are definitely considered 'short stature' which is typically for those not making the charts. So that comes into play for some testing they had done today and an Endocrinologist that they'd like them to see to discuss possible growth disorders and options. We already know Jax had a 'growth disorder' while I was pregnant because of the knotted cord, which is called IUGR (Inter Uteran Growth Restriction) which constricts blood and nutrients to a growing fetus. And also lung disease really affects growth as well (as does malnutrition and absorption issues - all Jax). He said that IUGR very often causes mild to extreme medical issues and many learning issues (ick, that was awful to hear), and that even though Brady wasn't specifically 'IUGR' it's very probable that he had moments of blood flow interruption that could contribute to his 'difficulties'.

So the doctor gave the boys a physical exam, and looked over Jason and I a little bit. He said the boys have my pigmentation but most of Jason's facial structure (I hope they get his nose, ha!). Both the boys have a little bit of stiffness in their pinky fingers, which had to be noted, but I don't think it was anything too important. He tested my and Jason's fingers then and apparently I have it too, so there you go.

We discussed EVERYTHING for a good 90 minutes. He said he was extremely impressed how well Jax has come along after reading what happened to him the first two years. I asked how Jax could be diagnosed with an 'incurable disease' (CIPO) and now not seem to have it (although he does exhibit a very sensitive GI system still). He said that Jax probably had a lot of nerve issues and unlike adults, children can regenerate and improve their nerve function remarkably.
We talked about how Jax was thought to have Mitochondrial Disease, tested for it - which was inconclusive, but treated for it anyway with a natural supplement cocktail because of presenting symptoms. The Genetics Specialist said that all made sense, but we all agreed that since Jax has recovered SO much from being SO sick, it really doesn't fit the profile at all anymore.
The doc said that Jax had a chromosomal panel ran simultaneously with the mito testing back in 2009 - I had no idea! That test was all good, so that's a really good indicator for us, but I guess tests have come a long way already in the last 3 years, so it didn't cover everything they would like to see now.

So, what's the end result? I asked if it could all just be things that need to be worked out and not a genetic disorder and he said YES IT COULD, buuuut we need to do some tests. Yup, 'some' tests include:

TSH/Free Ty - Thyroid
IGFBP3, IGFBPI - Growth factors
Fragile X
Bone Age - X-Ray
Complete Metabolic Profile
(and see an Endocrinologist for their specific testing)

We discussed the fact that the speech therapists wants the boys to see an ENT and they said the boys absolutely should and we may find something that could help, buuuuut (there it is again) the doctor thinks it would be more for articulation for the level Jax is at. He said the extreme speech issue with Brady is beyond that and he suggested his colleague at the Child Development Center - which we are already on the wait list from, so the doc was really impressed with us ;)

He said that the final overall Umbrella diagnosis may end up being: Mono/Mono twins. Identical twins have 100x more chances to have medical and developmental complications, then add in the complexity of them sharing an amnio sac with knotted cords, and it's extremely higher. We shall see if this is the main factor with their issues...
The doctor sat right in front of me, put his hands on my knee and looked directly into my face (woah) and proceeded to tell me that none of this was my fault and I couldn't have done anything to change any of this. I seriously almost started to cry!

The boys were NOT happy to go to the lab. Jax kept asking "shot? cry?" so he was nervous. He went first and actually did really well. But then... Brady got so much anxiety, he RAN OUT THE DOOR and down the hallway. I was alone with the boys at this point and there was a moment of chaos. Brady was... well, the child was completely hysterical. He had blood drawn once in his life since NICU days, and he clearly remembered hating it. We made it through and they left with about 10 stickers on their shirts. Then we headed down to Radiology to get X-Rays of their arms to measure their 'bone age'. I learn something new every day!

I hauled the boys back to the truck and promised Happy Meals (obviously I eat Jax's meal and he gets the toy) as a treat for the long day and I drove them to school. Jax drank his milk in the parking lot and away we went.
One problem. The boys still had URINE BAGS taped to their genitals to collect a urine sample. UGH. So I had to bring them each into the changing room at their school and peel it off (no urine was inside) and they screamed so bad and left raw marks on them. What do I do?? Does anyone have a suggestion of how to do this? I didn't just leave the bags because once they go, I need to freeze the sample until I bring it back to the lab. I didn't want them at school for 3 hours with a taped bag of pee hanging off them. Seriously, these are the problems of the Lettenberger boys.

Help... I need samples and can't even stomach the thought of putting tape over their already raw skin :(

So to wrap up this unbelievably long post, I've made an appointment with an ENT for the boys for Nov 26, and am waiting for Endocrinology to call me back once they receive the Genetic's referral.
So we're waiting on tons of tests, which we're all kind of expecting to come back normal and to move onto the other specialty departments. You know... all our hope and faith come into play here while I silently pace for the phone calls.
Whew, Goodnight!