Sunday, March 31, 2013

Happy Easter

Aaaand we didn't make it to the family holiday festivities. Poor Jax just couldn't kick the cold he started on Thursday. His vomiting and asthma picked up on Friday and has continued through the weekend (ugh). We knew when Jax was up vomiting at 5:30 am today that we were going to have to skip the trip home that we had planned for the day. It's a bummer, and we had hoped he'd do better through the night to make the trip, but at least we were all together and no one was in the hospital or ER or anything, so we count our blessings!
I will however be bringing him in to see the doctor if he's still vomiting tomorrow (which will be day 5). He goes in-and-out of being ok, to sluggish, and not keeping much of anything down. It's odd to keep going this long.

The Easter Bunny did bring the boys some smiles. They found their baskets and had an egg hunt in the basement. We didn't do any candy for this first year since Jax can't eat it anyway, so everything was a small toy or activity that kept them busy all day.

On Friday, I took Brady into the pediatrician to have his Molluscum bumps looked at, and the doctor and I ended up talking more about Jax (who wasn't even there)! As for Brady's bumps, the doctor agreed it has spread, but they're still ok. We're taking the road of just letting them heal up rather than burning them off. It will all go away with time and he can wear shorts and be in pools and take baths with Jax, he just has to have his own towel, which he does.

As for Jax, the doctor is going to have us try a corticosteroid nasal spray on him after he's done with this cold to see if it helps with his congestion that he often seems to have. She showed me a trick of how to administer it to him to try and prevent bloody noses, so I'm re-trying my old Nasonex on myself this way. I loved how that nasal spray worked last year, but it gave me daily bloody noses, so we'll see! We're going to try in through the month of April to see if does anything for him. We don't know if he has 'allergies' since his asthma is most likely a result of his lung disease rather than allergy like most asthma-cases. And most children don't start seasonal allergies under the age of 2, so we'll see if it's a contributing factor to his recent constant-congestion over the last 6 weeks now that he's older.

The boys have off this whole week, so I was hoping to get out and do some fun stuff with them, but we'll have to see how Jax is over the next few days and if Brady starts anything up. We also get our windows on Wednesday and Thursday, so it should be a busy little week!

Random Thursday morning pirates.

Trying to chase the sickies away this weekend with dying some Easter eggs.

Apparently asking them to "smile with their eggs" was a tall order.

This may be my most favorite awkward smile-photo yet!

OOOOH! says Jax when seeing a basket in the basketball basket!

Egg hunt!

All their loot!

Thursday, March 28, 2013

"What's wrong with me?"

Yup, Jax asked me this today when I put the remainder of his lunch through his feeding tube. I mean... what do you do other than hope your heart recovers from skipping a beat when this little boy says something like that.
Jax started a cold yesterday, so the congestion is making him gag, so you can imagine how well meals are going. I'm sick and tired of watching him go through the pain of vomiting, and of course cleaning it up, so after he drank half his lunchtime milk, I just put the rest of it through his tube. He just looked at me and asked what was wrong with him. I was taken aback, and looked back at him saying NOTHING was wrong with him, absolutely nothing. I told him I didn't want him to feel like he had to drink his milk fast to make the bus for school and get sick again. He didn't say anything back, but my heart was racing. This was exactly what I was hoping to avoid when I realized he was going to need a feeding tube past his infant-year. I wanted so badly for him to never remember having it, or feeling different, or realizing his body doesn't work like everyone else.

Of course I know this makes him the strong willed kid he is, but it really made me realize today that he is going to remember this, and he is going to realize more and more that most other people don't have a tubie. We will continue to keep things positive for him and of course there's tons of life lessons to be learned, but... I just don't really have many more words to express about it all. I just hate all of this for him some days.

Otherwise the day has been filled with phone calls. I received a call from Brady's therapist that he qualifies for 4 weeks of summer speech through the district, but Jax does not. That's good news for Jax I guess!
I received a call from Brady's teacher that she's concerned about the bumps/pox that are on his legs (Molluscum Contagiosum). They've spread down to his ankles and now a few on his abdomen. I told her the doctor suggested we don't treat them and they'd go away on their own by summer time, but since we've noticed they've spread so much, I said we'd have him looked over again. So I'm bringing Brady in by his pediatrician tomorrow morning to take a peak at it. I have a feeling the doc will say to just stay the course. I guess the cost of another co-pay is worth not feeling like a bad parent to the teacher. (sigh)

I also got a call from Jax's medical supply company saying that insurance is most likely cutting off Jax's Pediasure (he uses a medical grade version with a higher caloric volume and fiber for GI). I have to call back Monday to see if they could get it go through for our April delivery. I really just felt numb about the situation given that they pretty much cut Jax off from therapy as well, so... I'm going to keep those feelings bottled up until I finish writing the appeal letter. Yeah, I'll let it all out on that!

Then I was called (seriously) from the OT/PT department at Childrens Hospital for the boys to be reviewed in mid-April. I asked if it was totally necessary since the boys do have IEPs at school, and the lady said she actually needs the boy's IEPs so they can see if anything is missed through their evaluations. She had a note from the Dev Center that the boys have Speech Apraxia and they just want to cover their bases that their motor delays are addressed since things like Dyspraxia or other motor dysfunction is commonly associated together. I guess... it never hurts to have things double checked, but oh my goodness, sometimes it never ends. Hey, just help us potty train, and we'll be happy ;)

One last call, and that's that our windows are finished! They will be installed next Wednesday and Thursday. Hmmm, I guess I should've been more proactive on figuring out some new window treatments. Oy. We need to remove every window treatment by next week, and obviously since many of them are original to the house, it's time to be updated. So I ran to a local window treatment store this afternoon with pictures and measurements. I got a lot of great ideas, but um... I'm a bit sticker-shocked, HOLY COW that stuff is expensive. OY!

Such is life.

Well, I hope you're all ready for Easter this weekend. This is the first year the boys understand the Easter Bunny, which should be suuuuper cute to watch them search for baskets. We have a day planned of brunch and dinner up north with both of our families so the day will be filled with family, that sounds kind of lovely right about now! Enjoy the milder weather and the holiday everyone!

Sunday, March 24, 2013

Good listening, good ears and a good party

I'm so behind!
Last Thursday, we had the boy's teacher conference. It went really well, and the boys are making gains in all areas. Jax's speech and language capabilities have been making huge leaps these past few months. He clearly has a speech "issue" with pronunciation and articulation, which is the Apraxia-part, but the fact you can understand full sentences makes communication so much better. He also says things every day that make us laugh now.

The boys are now considered "peer models" in their class for behavior and following directions. Their class is technically a "special needs preschool" program called "Early Childhood" that a child has to test into with delays in two or more areas, but the class also has a couple of typically developed children called "peer models" to help the kids in all the areas. I was surprised when the teacher said the boys are now considered that for those areas. Awe... that really helps parents like us feel accomplishment for our kids who struggle at some of the most simple developments for other kids.

We asked how they all felt about the reports from the Child Development Center stating the boys are not considered to have ADHD, and they were a little quiet, but they did say that they believed the boy's attention was getting better, although they were still struggling a bit with slowing them down. They still go so fast that they run into other children or objects almost daily. Jax's phy-ed teacher said that when she can get Jax to slow down, he performs the tasks better as well (like walking the balance beam). So there is still that to really work on. I didn't get the feeling from them that they were fully convinced that ADHD wasn't a possible issue since they said the boys pay attention great for things they're interested in, but it's still difficult to get them to look directly at them and listen when they're not interested. But it may just be that they're 4, and they're really motor driven, so we just keep an eye on it and try to work on it.

The only surprise of the meeting was the suggestion to split the boys up in 4k in the fall. I had planned on keeping them together until 1st grade, but the teacher said that Brady actually has a lot more leadership and shines more when Jax is out of class for appointments. Jax is the alpha twin and is protective of Brady, so he often answers for him knowing Brady can't talk. Brady tends to follow Jax's lead in activities then as well, so they'll be split. There are so many good reasons to keep them together since they do so well together, but this one area for Brady is more important, so they'll be in different classes for the rest of their school years starting this fall.

Brady had his ear re-check on Friday and he looked pretty good, so he will not be getting a tube placed next month when Jax does. The doctor said there was a slight bubble in his right ear, so he checked the pressure to his ear drum, and he did fine, so we're going to just re-check Brady in September before school starts back up to make sure his hearing is still perfect given his speech struggles. The doc peeked in Jax's ears again because Jax REALLY wanted him to, and yup, he still has an eardrum full of fluid on that right side for no real reason. He's still pukey off and on lately, so I can't imagine an ear full of fluid helps either, so I'm kind of hoping the tube may help him with his fluid and gagging.

We went to the Bonin-twins birthday party on Saturday, and the boys had a blast. We're finally to the point where we can have conversations with people and enjoy ourselves while the kids play and typically know how to behave without our eyes on them every 5 minutes. So, to anyone reading this with young twins, I promise the age of 4 gets a lot easier. Haha, well... at least in this particular area.

We all just got back from the gym today (Sunday) and just finished lunch. The boys are downstairs with Jason playing basketball and watching March Madness. Jaxon is pretty much obsessed with basketball these days and we laughed when the teachers brought it up. Apparently he even talks about it at school. Rachel and Dennis are bringing baby Santina over for the North Carolina game this afternoon, so we get some cute-baby time in today.

We have a pretty standard week ahead. Although, Jax doesn't have feeding therapy because insurance declined all the sessions requested by our therapist (only 6 of the 26 requested were approved), so I'm working on a letter to appeal it to the state and then I will have to attend a hearing to fight our case. Our therapist said he would accompany me, so that makes me feel a bit less nervous. I'm collecting documentation from the Feeding Clinic team and will do my best to write a good letter stating the extreme need. Wish me luck on this new process/project I'll be working on!

The boys do this pretty much off and on all day. Every day. It's like watching puppies play.

Jax in the playroom at the birthday party.

Sweet moment between mama and Kelsey.

Drew and Brady playing cars. They seriously look like brothers.

The birthday kids! I loved the cakes!

Cozy Coops just don't get old.

He would've eaten 10 if we let him. Jax is still the only child at any party who completely passes on the cake part!

Tuesday, March 19, 2013

Kissy Face

I think there's a bit of a bug lurking in the house because Jax is having a hard time with food the last few days, and it comes and goes. He didn't keep any of his meals down on Sunday, but then kept them all down on Monday, but didn't keep his night feed down last night. He has a sliiiight runny nose, so it seems to gag him a bit. Otherwise the boys are doing great. They have SO much energy that they just want to run off every day. I can't wait for warmer days to get them outside. Seriously, it's like these little maniacs have batteries!
We had another failed attempt at potty training this whole past weekend. Even after having them sit on the potty for an hour straight multiple times, we got ONE successful pee out of Jax, and I don't even know if he realized it! Brady was a complete stand off, and went in his diaper shortly after being on the potty every.single.time. (sigh)

The boys have been entranced with college basketball lately. They will sit and watch "Bucky Badger" for most of the game with Jay. I can't believe how much they love it. I think they will have to be point guards if they still love it this much to play when they're older! Jason has been pumping them up for baseball season, so I'm sure we'll be venturing down to Miller Park a lot more this summer.

Let's see... the rest of the week is pretty standard. Jax has feeding therapy today and Brady has his ear-check on Friday. Jason and I have the boy's teacher-conferences on Thursday evening, so my fingers are crossed it's a good meeting.

Out to dinner on Saturday. Brady was practicing his chop sticks while eating his "Ninja Noodles".

This will never get old. Notice Jax's kiss-mark from me on his cheek? He told me he liked my shirt and I was pretty on our way out to dinner.

Friday, March 15, 2013

Wrong Appointment

Well apparently I screwed up our appointment today. It's so fun to get the boys all packed up, drive all the way to the hospital, park, walk a mile with two small children and then find out the appointment was set for NEXT Friday! Ugh. So Brady has to wait for his exam for another week. Ce la vie.

I finally got the boys back into the chiropractor. Of course Brady's neck is out in multiple places from a nasty fall he took last week. He likes to be chased around the house, but he while he's running, he tends to look backwards and often runs into things. OUCH.

The boy's speech therapist called me to discuss how Brady's computer is going at home. She then mentioned Brady running into another little boy at school last week and I said I must have the clumsiest kids. She said they actually do run into things or others often. We are just so graceful up in here.

Otherwise we're just chugging along. Jax's language skills are really soaring lately, and he says a new term, sentence or descriptive word every day now, it's so great to see him thrive this way.

Tuesday, March 12, 2013

Eustachian tube dysfunction

Blerg... that's a fancy title for "Jax needs an ear-tube".
Jax had his ENT follow-up yesterday and the doctor said there is still fluid sitting in his ear, and given how badly he failed his last hearing test, he wants a tube in it. I was surprised because I assumed that since there weren't any actual ear infections over the last 2 months, he'd be just fine, but the doctor said that his Eustachian tube just doesn't drain well, and hearing loss off and on adds to his speech problem. Apparently children over the age of 3.5 should be able to drain fluid enough to not cause hearing issues.
The doctor asked how Brady has been, and I mentioned that he's been snoring a lot over the last few months, so the doctor wants to see him Friday. If Brady is still showing fluid hanging out in the right ear too, he may be recommended for a tube as well (and we'd obviously want their procedures done at the same time). Brady failed his hearing test on his right ear in November, so the doc wants to keep monitoring that one as well.
He thinks it may be a genetic thing between the boys and I since I have hearing loss in my right ear due to scar tissue from repeated infections. It's definitely odd that it only affects all of our right ears.

Well, this wasn't the news I was hoping for, but if it keeps the boys from having permanent hearing issues or troubles, I guess it should be done. And God knows they need their hearing at perfection given their speech disorder.

The doc said he typically removes the adenoids when putting tubes in, but given the Apraxia issue, he won't touch them. He doesn't want it to add to their speech issue. He seems to feel the boys may have some soft palate mistiming and Hypernasality, even though they were not Dx'd with VPI when we saw the Cleft Palate Team. I swear this stuff just makes my head spin.
Either way, I noticed later on Jax's visit report, his list of 'issues' included the term "Congenital disorder of Pharynx". Um, no clue what that is. The other terms were obvious, Eustachian tube dysfunction, Feeding difficulties, Short stature, Feeding Disorder, Gastrostomy Status (G-tube).

Then Jax and I had a couple of hours before his Feeding/GI team followup. We had a lunch date in the cafeteria and looked at all the fish that he hadn't seen in awhile.

His Feeding Team followup went okay but not amazing. Jax gained over a pound with his double tube-feedings despite his couple bouts of illness. His BMI is still too low, so we can't ease up on any calories. So he must remain on the double feedings until his next appointment with the GI specialist and dietician in 2 months. Ugh. But at least he's on the right path. But he'll have a weight re-check and feeding session in one month to make sure things stay on track.

Jax met with the head of the Feeding department since his regular therapist at the hospital was out, and she remembered us from when Jax was a baby. She LOVED seeing him and said that despite his small stature, he looked so good to her. She did a feeding session with him, and really liked his skills with drinking and smooth food, but she was definitely taken aback a bit when she found out he hasn't made substantial gains in chewing over the past year.
She did a lot of mushy foods with him, and had to really coach it through to get him to swallow it (rather than pocketing in his cheeks, under tongue etc). When she gave him a piece of hard cracker, I knew it was coming... he puked all over her.
She thinks Jax needs more repetitive therapy rather than his just once weekly session he gets now. I told her that Jax's insurance actually stopped last week and required further information from his private therapist, so she is going to speak with the private therapist to try and work together to problem solve this issue.
She is going to try and get a 2-3 day outpatient program for Jax, where I'd bring him in for lunch and dinner to work on chewing. Those few days would be crazy, but it would be worth it if it could get Jax over this hump he's been stuck at for so long.

The private therapist texted me today saying Jax's insurance came back approving 6 sessions and he was pretty upset about it and was appealing it. I faxed him Jax's visit report from the Feeding Psychologist, GI specialist, Dietician and head of the department stating his extreme need right now, so hopefully that will help.

Hopefully the rest of the week is uneventful, and we'll see if anything is up with Brady's ears on Friday.

Sunday, March 10, 2013

Assistive Technology

Brady is an official user of Assistive Technology at home. The speech therapist was able to get the school district to grant me permission to take Brady's iPad from school home to work on. I called the IT department of the application Go Talk Now and after an hour, we finally got the school program to transfer to Brady's mini iPad at home, whew!
I added a bunch of buttons that pertain to Brady at home, like food, toys, activities, and I'm sure we'll be adding things all the time. He knows it helps people understand him, and he LOVES it. I asked him what he wanted for dinner tonight, and a few moments later I heard, "I want -  to eat -  Fruit Loops". I turned around with my jaw wide open, and he was standing there with a BIG grin on his face. That boy earned himself Fruit Loops for dinner! He even put the sentence together correctly so he must be really learning how to use the program while at school, it's so amazing.

I have a picture below of Brady with his computer, and also with his carrier that my amazing friend Sara made for him. It's a cross body that clips to his belt loop, so he can pull it out and communicate when he needs to. Sara's work is fabulous and I can't express my appreciation enough!  Check out her stuff at Peanut & Pumpkin!

I received a book in the mail called Speaking of Apraxia that I had won from Kim Scanlon's website . How great is that? The book is written by a nurse, who has a child with Apraxia, and is filled with amazing information on the disorder from toddler to teen, and all the other difficulties that come with it. I really appreciate having such a great guide right on hand. Thank you to a reader from here who directed me over!

I also received an email from the boy's school aide this past week. Apparently she is furthering her education in early childhood special education and has a project that she'd like to use Brady for. She needs to do a presentation on a disability affecting children's education. She chose Apraxia and asked permission to record one of Brady's speech therapy sessions. Of course I gave my permission, and actually pointed her to an old video of Brady a year ago (I have on YouTube) if she wanted to use any footage of him for progress purposes from that time as well. Hopefully it can spread some awareness.

Otherwise all is well at Casa de Lettenberger. Jax has his ENT and Feeding/GI appointments tomorrow, so he and I will be at the hospital most of the day while Brady is in school. Let's hope Jax has gained some decent weight to be out of the danger zone, and to come down on some of the extra tube-feeding!

So happy!

The amazing talent of Sara!

I'll just put a knot in the strap at the top to bring it up a bit and it can grow with him.

The case we purchased from the company who made the app. Great for young kids!

One of Brady's screen shots. He pushes a button and it goes up to the top. Once he has all the buttons he wants to use, he pushes the top green button and the sentence is read out loud.

** And a big THANKS to Shana for your generous Christmas gift to the boys of the iTunes gift cards. It really helped with Brady's speech program, you rock!

Thursday, March 7, 2013

Video of Jax chewing a peach!

Jax's private feeding therapist sent me this short video of Jax chewing on a peach! He did very well! I guess Jax felt confident after this and grabbed the piece and put it in his mouth. He panicked, gagged, and threw it up, but hey, it was the first time he put something in his mouth without being told to! That's growth people!

Wednesday, March 6, 2013

Back to school!

The boys are going to school today, yay! Jax has been a bit pukey, but he never picked up Croup from Brady, so it's a success. I've been snowed in with the boys since Sunday (Jay is away on business) so they've had a lot of recouping time and ready to get out of the house today.

Swinging outside before bed on Monday to avoid croupy coughs!

Brady was cracking me up in a Hulk costume. He really got into character!

Of course Jax wanted in on the action too!

Sunday, March 3, 2013

Croup Loop

The boys had a fun start to their weekend with a play date with Marshall and Cecilia on Friday afternoon, they had a blast!
We realized on Saturday that Brady's coughing had picked up again, and by the time he was in bed that evening, it was pretty constant. I noticed his cough changed during the night and as soon as we heard the lovely 'seal bark' we sprinted out of bed and grabbed him! We bundled him up and Jason drove him around (the 'Croup Loop' as my friend Jessica and Kim so affectionately have dubbed it) with the window down to get the cold air blowing on his face. He thinks it's cool to snuggle up to a blanket with the window down!
When they got back, we put Brady in the room next to ours so we could listen closely for any issues (ie, Stridor), so we basically didn't sleep anymore from that point.
I called our pediatrician's cell phone this morning, and after a discussion of what was going on, she called a liquid steroid in for Brady in hopes this doesn't blow up more like last time. She called in double the amount as a backup in case Jax starts symptoms tonight. Jax started a runny nose, so we'll see, otherwise I doubled his preventative inhaler in hopes to safe guard him a bit.

Otherwise, things have been pretty calm this weekend. Jason and I finally pulled the trigger on new windows for the house (we're still slightly dizzy from signing that dotted line), and we've been working around the clock on some work-projects that Jason has to get done. Jay is supposed to fly out first thing tomorrow until Wednesday, but if things blow up with the boys tonight... I may be hanging onto his leg so he'd have to drag me in order to leave! We'll see how that all goes... wish us luck!

Jax, CeCe, Mars and Brady (They were all in the same NICU at the same time, how sweet is that?!)

A friendly little game of bowling!