Thursday, January 31, 2013

All clear

The boys met with the Cleft Palate Team Specialist today for about 1.5 hours. They loved the exam room with all the toys that were cleverly placed to spark conversation about specific items. The doc had each boy do an exercise with repeating words back to the him, and sometimes he used an instrument under their nose to see if it fogged up - indicating air coming out their nose. The doctor asked us if we've ever heard hypernasal sounds on a consistent basis, and I said I seriously didn't know what everyone heard in the ENT appointment. I felt silly for not hearing 'it'. So the doctor gave us examples, and Jason and I both shook our heads no. But Brady does definitely replace most letters for the D or G, so maaaaaybe some of the sounds were nasalish sounding??? We honestly had no idea.

Jaxon did great. He repeated each word with his little 'impediment' (like he says "cheeps" for chips). After Jax was done, he raised the roof with his hands and then did a little jig, it was SO cute. Then I felt a bunch of anxiety for Brady knowing he was next. I felt like he was going to have to show the room and perform his speech issues. I don't know why I felt so nervous for him?? I mean, he was there for his speech issues...

Brady was so cooperative and the doctor was SO nice. Brady repeated every word the doctor asked, and even though most of them were completely wrong, we all smiled at him after every attempt, and by the end, he too... had a look of pride. I swear I could've just burst out crying and hug him for just trying to say words for someone! I have problems, I know.

The doctor examined their mouths for quite awhile and made most of it into play for them. The doc said that he couldn't find any evidence that the ENT did of Hypernasality or structural issues, so he did not want to perform further testing - NO scope. This is great news! And yet... Jason and I just sat their in silence. I think we both really expected the doctor to find something wrong. And maybe... fix it. Because there is a problem.

But this is not the answer. That's easier to say/type/think now at the end of the day with some clarity.

The doctor then said that Jax has a pretty classic case of Apraxia (the Development Center hasn't tested him for it yet - that will be next week) and that Brady has it as well or it could be a combination of that with a Phonological Speech Disorder. The doctor really loved the boys and we could tell he felt BAD for us because he said he wanted to give us some help in some way. He of course said the boys need extensive speech therapy, and he kind of even seemed to feel bad for even saying that since he could see the boys have been in therapy their whole lives (Jax since birth with feeding and Brady since 18 months).

He asked if Brady was starting to have behavioral issues with his inability to speak. We don't think he is, but he's definitely getting frustrated. The doctor brought up assisted technology and we told him we're waiting for the school to review him and get something in the classroom. We want to model the same program at home, so we're waiting... and waiting.

So in the meantime, we'll keep plugging away. Jax will be seeing the ENT on Feb 18 to recheck his ears since failing his last test, then he has a Feeding Clinic followup/weigh in directly after upstairs (it never works out so nice like that). Before all that, we have the Child Development Center final meeting on the 15th to review everything on the boys, so maybe discussing the possible Phonological Disorder would be helpful at that time. So, maybe more info to help will be coming around soon.

Wednesday, January 30, 2013

Nasal Endoscopy tomorrow

Hello! It's been a couple new days and spirits are back up. Jax has been keeping down all the extra calories, and I know it sounds weird, but I swear his energy is up and he just looks perkier. He had private feeding therapy yesterday (Tuesday) and Mr Nick had a copy of the report from Monday. He decided to hold off on biting and chewing and worked more on quality of bites of smooth food and liquid.
He said that he is not looking at this as a step back, especially since we've been sitting idle for SO many months. He thinks that a big push of weight gain over the next two months will actually set Jax up to move forward with his oral feeds. It obviously feels like a big step back using his tube so much more again, but hopefully in the long run, it's helps things along. Trying to be positive!

The boys finally have their big appointment for a Nasal-endoscopy with the Cleft Palate Team tomorrow morning. If they cooperate, they will each get a small tube and camera placed through their nose that will go down to the back of their throats. Then a speech therapist will have them do some voice exercises while the doctors examine the function of their soft palate and throat. They will also examine for any other issues that can't be seen from just looking in the mouth.
This scope may find an issue adding to their speech disorder, or there may be nothing wrong at all back there. We were referred to the ENT from the boy's speech therapist at school, and the ENT said the boys sounded like they had air escaping through their nose when speaking, leading to the thought of Hypernasality, and they needed the nasal-endoscopy from a specialized team to examine everything.

I hope and pray the boys cooperate and they're not too scared or in any pain with the whole process. I assume Jason will have to walk one boy out while we perform the scope on the other one. Wish us luck... I have no idea what to expect...


My pile of hams




Monday, January 28, 2013

Ugh.

Sorry for the dreadful and ambiguous post title. I'm feeling defeated today and coming up with a positively cheery title isn't in me. During the last week, I've had conversations with several people who were concerned about Jax's weight. His pediatrician asked if he was going to be seeing the feeding team at Childrens Hospital soon, and I said it was in a week. She was happy to hear that otherwise she was sending us in early (and she hadn't done that since Jax first came home from the NICU). Then I got a call from Jax's teacher on Wednesday voicing her concern, then the chiropractor and Mr Nick brought it up on Friday during his appointments, so my anxiety was really building up for today's appointment (and probably explains my need to post a random disclaimer on my blog a few days ago).
Jax had his full Feeding Team/GI specialist appointment today. His last full team appointment was in July and he usually just checks in with the dietician, feeding psych and therapist every few months. Of course the GI specialist was bummed to see Jax still struggling with food and more importantly, his weight. I think he was expecting (as I was last July) to be discussing tube-removal.

The appointment started like they all do with a weigh-in and measurement. When Jax stepped on the scale, I got pretty upset. He weighed in at 24.4lbs.

ugh.

I put my face in my hands and had a million thoughts run through my head when suddenly Jax put his hands over mine, I looked up and he was about to cry asking why I was sad. I knew right there that I had to pull it together and buck up. I told him I was not sad and everything was completely fine. He knew that by standing on the scale, I was upset and I do NOT want him thinking that he is doing anything wrong. We loaded him up with stickers and walked his skinny little legs to his room.

The dietitian, feeding psych, feeding therapist and GI nurse came and sat with all their laptops. I knew they all saw his weight and no one said anything. The nurse started with all her typical questions and we discussed his latest behavior during meals and what kind of food and textures he's accepting and how private therapy is going. Then they asked about any recent illnesses and that may have affected his weight. And that's when the real conversation began.

When I saw some of these ladies 6 weeks ago for a follow up, I cried when talking about Jax's struggles to move forward with oral feeding, and they left me alone about the weight. But now with a weight loss to an already unhealthy weight, it was time for a talk. The dietician started, and I could tell she was treading very lightly, so I told her it was okay, and that I wasn't going to cry because Jax was sitting in front of us, so I needed to hear them say what they needed to say and figure this out.

She said Jax is currently at 80% of his ideal body weight. That puts him 1% away from moving from the mildly malnourished category to moderate. She said it definitely needs to be addressed immediately and it is officially the number 1 goal moving forward. Even though technically... this is all a gigantic step back.

I have to double his tube-feedings every night (I mean.... ouch... SO ouch) and continue with what he intakes during the day. I shouldn't focus on his biting and chewing, but he should continue his once-weekly sessions with Mr Nick (our private therapist).
The Feeding Psych gave some suggestions to some other smaller issues we've been having with feeding (like Jax not wanting to attempt to feed himself at all, pocketing food in his cheeks and lingering with a straw in his mouth and not drinking - all making a feeding session take way too long).
The feeding therapist did a session with him to gauge where he's at with smooth foods, drinking capabilities and then chewing. He had some peaches today! Well, she mashed them up, so it was kind of peach puree, and he really wasn't great with it, but it was officially in his mouth and some in his belly ;) He is definitely really struggling with any solid foods...

After all of that, we met with the GI specialist who was updated by all the gals. He thinks the doubled up formula through the tube will really help with catch up weight and that's the first and only goal right now. Malnutrition can lead to a lot of problems, and he feels that one more bad illness can really put him under with weight. He thinks Jax's asthma plays a big part in weight loss during illness because he breathes so fast and works hard. I told him that Jax's asthma has been really controlled this year, so I'm just so confused why this kid is struggling so bad with weight. The doc agreed that the diet I have Jax on is already very high calorie and fat, but he thinks Jax's need for calories is higher than Brady (he used him as an example since he's a logical comparison) and will just always need 'more' for energy and growth.

The doc said that once we get Jax's weight under control, and he feels confident it will, then we'll refocus on why Jax is struggling so bad with oral eating. He said we may have to do another inpatient program to get back on track. I asked if it could really help his biting/chewing and the doc said it can 'help' but it's impossible to learn how to bite and chew in that short of time. But Jax learning to comfortably intake all calories by mouth and thrive without his tube would be a goal.

I felt like that was our goal one year ago. And while I'm not disappointed in Jax that we're still here, I can't help not feeling a little bit like a parental failure. I think that's probably the most human emotion I can express in words about the whole thing.
My kid is malnourished. To the point where medical intervention will take place if it's not turned around... in TWO WEEKS. We have two weeks to get out of the red zone. No pressure.
They want to weigh Jax and see how he is then and then 3 weeks after that, he has to see the entire team again, including the GI specialist. Wow, Jax hasn't been this closely monitored since he was 'Failure to Thrive' as an infant, which I guess is essentially the same thing.
At least we have a team helping us who I can call at any time, so I do feel good about that. I just wish this child didn't always have a struggle.


I took Jax to Trader Joes on our way home from the hospital and I let him participate in picking out food. I figure it can only help with his relationship to food. He loved it. Those greek yogurts in his cart have 320cals and 18g fat in 8oz - wowza! It's like winning the loto to find healthy food with these kinds of calories and fat. Love it!

Then he helped check out the food. They sure are sweet at this store!

You can imagine how helpful he was...

Saturday, January 26, 2013

Happy meals really are happy

Need a smile? Check out Brady...


On Friday, the boys had chiropractor appointments and then Jax had lunch with Mr Nick for feeding therapy. So I took Brady to McDonald's for a lunch date alone - as you can see, he was PUMPED. I realized we hadn't had McD's since maybe... November (??)
We don't go as much in the winter/cold months since we're not out bumming around as much, and tend to go inside restaurants for meals. So it was a fun treat!
We each had a Happy Meal, so Brady could give Jax a toy when he was done with therapy, which made for an extremely happy Jax!

The boys are feeling much better. Brady still has a lingering cough, but he's only half done with his antibiotic. Jax is doing much better and finished the last of his Prednisolone last night. I'm hoping this will be our last emotional day of his from the drug!
Jax didn't do great at feeding therapy, and Mr Nick said he slid back a bit with his oral motor skills from being sick off and on the last two weeks. Jax will see him again on Tuesday, and he also has a big feeding clinic appointment at the hospital on Monday, so hopefully with those two things coming so soon, he'll get back to where he was.

Today the boys were up bright and early and ready for fun. We're just chillin' for the morning, but this afternoon the boys each get separate dates with Mom and Dad. Jay is going to take Jax to a Marquette basketball game this afternoon (Jax has been OBSESSED with sports lately) and Brady and I are going to find something fun to do for an hour or so as well.

Have a happy weekend y'all!

Wednesday, January 23, 2013

Side note to post below

It's obvious in the photos below in my post today that Jax still looks a little sick. More than anything, he's looking very gaunt lately (more than usual). The pediatrician mentioned it and the teacher called me today about it as well. Jax did ok in school today, but he was very emotional and cried when Brady left for speech therapy, so his liquid steroid is still making him a bit off.
The teacher said his energy is down a bit, which I hope we see back by the weekend.
We have a full GI/Feeding team meeting on Monday where we will meet with the dietician, feeding psych, GI nurse, speech therapist and GI specialist. We will be discussing Jax's weight in great detail, so I just wanted everyone to know that we are addressing it and of course thinking about it every day. We all just want this little guy to thrive so badly, but it's obvious that it's still an ongoing battle that we're still trying to figure out and overcome.

Get out!

The boys have been fever-free since Monday and they are certainly on the mend. They are going to school today - YAY! I could use some silence to get some work done.
I called their teacher to give her the heads up about Jax being on the Prednisolone, and how it makes him a little crazy. I assume he'll be on his good behavior when at school, but just in case he has an unexpected meltdown or something, at least she'll know he's all roided' up! And also to watch for breathing issues (the nurse at school has his inhaler).
Otherwise I think the boys are ready to get out of the house and see their friends as well!

Here's a few photos of the monkeys.


Story time

Brady being silly (these balloons were sent to me last November from my friend Janel requesting me as a bridesmaid - the balloons have lasted so long!)

The boys this morning.

I told them to pose like models. Brady takes it very serious!

And here are his gang signs. He's so hood'.

Jax and I put his old braces on 'Teddy'. He LOVES having a bear that looks like him. He keeps saying, "Teddy like ME".



Monday, January 21, 2013

Plenty of meds to mend

The boys had a rough night last night. Brady was up either coughing or snoring really loud and Jax was either coughing and gagging or whimpering. I was up every 3 hours or so trying to soothe one or both of them, checking Jax's tubing, giving breathing treatments or giving medicine.

The boys both got up with some decent spunk this morning, so that was nice. They both had low-grade fevers, but not true fevers. Jax seemed to perk up with all the fluid he got overnight and even drank some of his formula for breakfast and lunch today keeping it all down.

I took both the boys to the doctor late morning, and walked out with a bunch of prescriptions, oy. Even just after an hour of Albuterol, the doc could hear slight wheezing in Jax's lungs and his pulse ox was around 95/96. Of course that concerned her, so she's starting Jax on Prednisolone (a liquid steroid) to put through his tube for the next five days. Pairing that with Albuterol every 4 hours and his preventative Flovent twice a day, it will hopefully keep this kiddo out of the hospital.

Brady had some major thick mucus going on up in his sinus' and the back of his throat. He has fluid in his ears again too. Since he's had this slight cough for a few weeks and it REALLY ramped up with his struggles at night, he's been given a strong antibiotic to fight a sinus/adenoid infection. The doc gave me some probiotics to help with the side affects. She wanted to give him something stronger than what he used last Nov and Dec for the same problems.

I also had the doctor look at Brady's legs since his skin has developed some different looking eczema over the past month. The doctor said that it wasn't his eczema, but rather 'Molluscum Contagiosum' which is very common in children with eczema since their skin is itchy and they're more susceptible. They are small raised pearl like bumps from the pox family that will go away on their own, but we need to put his eczema cream on him every day instead of with just baths every other night. Apparently it's contagious, so we need to keep Brady's legs covered and not allow the boys to share towels (they don't anyway) - but I wonder if they can keep bathing together... I didn't ask that. And the boys always wrestle right after their bath before fully dressed, so we'll have to figure out how to make them stop doing that. Hmm.
Ohhh Brady and his skin issues...  the doctor said that children with skin issues typically have asthma issues. So my boys are always the exception since one has one issue and the other with another, although Jax's lung issues stem from not having enough blood flow during development, so in theory, he wouldn't have had these lung issues if there was never a knotted umbilical cord.
I do think that the boys are truly each other's ying to their yang though. Jax is Brady's voice and Brady is Jax's muscle. (how did I get so off topic here??)

Jason moved his flight from early this morning to this evening to make sure the boys were stable. After the night we had last night, I don't think he could've made a 7am plane if he wanted to! I assume the boys and I will be fine tonight now that we have these meds (coffee will get me through tomorrow!). We'll be hunkering down a bit longer. Which is fine with me since it's sooo cold, brrr!

Sunday, January 20, 2013

Don't count your chickens...

Ugh. We're hit - either 'again' or it came back with a vengeance.

We noticed Jax was acting off last night. He hasn't had a puke-free day since his last illness last week, but that doesn't mean this is the same thing, but to be sure, I paged his pediatrician this evening to consult. Jax was gaggy all last night and today had very glassy eyes with a little goo. He got worse through the day, so we didn't do any activities and had a low key day at home.

Well, he didn't really take any food today, and wanted to lay down all night. Then his cheeks got red and a cough started with a runny nose. BOO.
We checked his temp and his pulse ox and both stunk. He had a fever and active asthma, so he bought himself some Albuterol breathing treatments and a call to the doc. I wasn't sure if this was considered a 'returning fever' or a new one. If it's returning, he's in the danger zone for pneumonia.
The doc believes this is most likely a new illness, so we are trying to treat him at home. We gave him a bath and a dose of Zofran and Tylenol through the tube. He almost didn't keep it down, but it's been an hour now, so it must have hit him to feel better. I'm SO thankful for Zofran, as are all parents of tube-fed kids with GI issues probably are.  *Well, the drug was originally created to help cancer patients endure chemo treatments, so I think THEY are probably the ones who really appreciate it.

I'm running a slow pump of pure Pedialyte on him tonight to keep him hydrated (or to make up for the lack of fluid today), and treat him with breathing treatments through the night. I'll be taking him into the doctor tomorrow as long as we make it through tonight (which we should since he kept down the Zofran and Tylenol).
Brady has had a sliiiight cough for the past couple weeks and I mentioned on Saturday that I was going to bring him in on Monday to finally check it out. And of course his slight cough upgraded to a regular one (sigh) so I think they have the same bug. I will probably bring Brady in to just have him looked over since I'll be going in and he's been doing this odd little cough for a few weeks (one of those things we kept saying we'd check out if he still had 'next weekend', sigh).

I'll keep you all updated and hoping for healthy homes to all of you!

Friday, January 18, 2013

NO, we're elves!

Jax is doing much better. He's been fever-free since Wednesday night, but he still has a weak tummy at breakfast - which is typical for him after an illness. So that's great. We've been reading a lot of books and having family bowling tournaments on the wii each night. The boys just looove it when we all play and they insist that I have a girl character. The boys are really into categorizing me as the 'girl' in the house.
When we saw the show 'Sofia the First' on the Disney channel, I told Jax that if he and Brady were girls I was going to name them... and he cut me off SO upset and told me sternly that they were BOYS and stormed off. Ok then!
Then when the boys asked if they could lay in my bed for their nap/rest time today, I said they could and that they were some 'lucky duckies'. Jax said, "NO! We're elves!"
Ok...
Here's Jax chillin' in his pj's, argyle socks and dino slippers. Naturally.

I kept checking Jax's temperature and each time I turned around or walked back in the room, I kept finding Brady doing this - too cute!


Wednesday, January 16, 2013

We've finally been hit

We've had such a great healthy run this winter, so we really can't complain, but Jax has been hit. Not too bad since breathing issues aren't involved! He puked before bedtime on Sunday night, but we thought it was a fluke. He kept down his tube-feeding that night, but he puked when first waking up, and then a fever developed through the morning. He told me his head hurt, so we visited the doctor from their request when I called to consult.
He tested negative for strep or ear infections (although the fluid is still sitting around in there). The doc prescribed some Zofran to give at bedtime to keep a tube-feeding down and to come back today if ANY cold symptoms developed pointing to the flu. She wants Jax on Tamiflu immediately if that's the case given his lung issues.
Jax sipped water and Pedialyte yesterday, and then slept soundly all night with a very slow pump of formula and Pedialyte mixed together. He was breathing and sleeping fine at 1am when I checked on him. He seemed better this morning, but I could tell he was still off a bit, even though he was telling me he felt better and wanted to go to school.
I noticed his lips got really dry and keeps asking for water, but will only sip it. Well, the fever crept back up again and I can tell he just isn't himself. I called his teacher today and she told me he can't go to school tomorrow either since a fever has to be gone for 24hrs without medication, so the kiddo bought himself a lot more mama-time, which will be quite the sad scene when the bus comes for Brady today, oy. I need to see how much fluid he's willing to drink at lunch time to decide if I need to run a Pedialyte pump on him during the day (ugh, we haven't used the tube during the day in almost a year) so he doesn't end up dehydrated.

The good news is that there are no cold symptoms, so hopefully this is just a virus that will clear up during the week - send healthy hydrating thoughts!

Monday, January 14, 2013

It's baaack!

I got my camera back and found all these great holiday photos, enjoy!
Jaxon and Grandpa.
Christmas Eve with my mom and Grandparents.

The boys on Christmas morning. They found the half eaten cookies and Brady was looking up the chimney in AWE.

Santa's gifts! Bikes!

 Present from mama and daddy - a bat cave!

Presents from Nana and Papa - they were just so excited!

Brady was sooo excited about the cookies that Santa bit off that he asked to finish the magical cookie. He almost didn't want to swallow it - here it is!

Lettenberger Christmas day. Auntie Suzie has Brady here.

3 generations of Lettenberger boys.

Christmas day with Jay's parents and Grandpa.

The boys danced to a Wii game for HOURS with some of the other kids downstairs.

Christmas night at Nana and Papa's house with Father Dick and the Hoffmans. The lucky boys are opening books about Jesus and Frosty here - they looove them!

The boys with Father Dick

The boys with Grandma Christmas Eve. Clearly they're entranced with their super heroes she gave them!

Friday, January 11, 2013

Phone dump

We're just pluggin' away as usual around here. I've gotten a few messages from readers asking how Jax's feeding is going, or for videos of Brady's speech progress. I actually took a video of Brady playing yesterday, but my flip camera won't download with my updated software - is anything ever easy?
So I'll work on the video part. I want Jax's feeding therapist to use it as well at his next therapy session since I was told how MUCH Jax actually consumed last Tuesday. We've decided to increase Jax's therapy sessions to every week rather than every other and just deal with the insurance part in Feb when the sessions run out again. We feel like Jax is on the edge of 'getting it', so we want as much therapy as possible right now.

Some pics off my phone...


Taking an oatmeal bath (for Brady's winter skin)

Because I can still get them to do this...

Jax working on chewing with his feeding tool.



First nibble off a soft banana!

Monday, January 7, 2013

Hear this

Everyone is back to their regular full weeks again.  Jason and I took the boys to their hearing re-checks and ENT appointment at the hospital today. We got the opposite results from last time. Jaxon was the one to show a mild to moderate hearing loss in his right year with fluid and Brady's hearing was pretty good. The ENT is going to give Jax another 6 weeks to clear the fluid and see how he does, in addition, waiting until after the Cleft Palate Team meeting at the end of the month, to see if he needs to get a tube in that ear, and to see if there would be any further surgical needs on their end to do everything at once.

The doc is giving Brady another 4 months to see how he is doing, unless something sooner arises. Brady's right ear showed some negative pressure on the scan, but his hearing was decent. Isn't it interesting that both of the boy's right ears and MY right ear give us problems?

The doc also mentioned that he would usually take the adenoids out when placing a tube, but since Jax has a speech disorder and a possible issue with his soft palate, he said it would actually add to his speech issue, so it would only be a tube to help drain the fluid that keeps sitting behind the drum. Obviously any hearing issues don't help the boys with their speech, and also constant fluid and infections can lead to hearing loss.

Jason has left for a business trip until late Wednesday, so it's just the boys and I hangin' tough. Brady has the last of his Development Center appointments tomorrow, and Jax has feeding therapy, otherwise the rest of the week is pretty normal!

Some funny things that Jax said over the past few days:

Jason: "It looks like the strap of your brace broke."
Jax: "Oh crap, we have call doctor!"

****

Annie: "Jax, you got up a little early this morning."
Jax: "Su Up!"
Annie: "Did you just tell me to shut up?!"
Jax: "NO! Su Up!" he gets up and points out the window.
Ohhhhh the SUN is UP!
ha.

****
Annie: "Jax, Drew and Kelsey are coming over. Can you say Kelsey?"
Jax: "No, I'm busy."

He cracks us up almost daily with what comes out of his mouth. Most of what he says is still hard to understand, but he's definitely saying it! Brady is still struggling, but he's started to approximate words now! Like he says, "dow" when he's done eating and wants to get down and other things that you can understand when you know the context. Or he repeats what Jax says, and the approximation is getting close, but he uses the letter "g" in most words.
I actually just received Brady's speech report from the Development Center and it gives him a score based on age equivalency. His Auditory Comprehension was 18%tile at 3yrs,4m and his Expressive Communications was at the 1%tile at 2yrs,2m (ouch) with a total language score of 2 yrs, 9months. Buuuut his prognosis was rated GOOD, meaning with a lot of therapy and hard work, it can be improved.
Here's to hoping!

Thursday, January 3, 2013

Pink Eye and Great News!

Ha, that's an oxymoron title hey?
Well the obvious part is that someone has Pink Eye, well, two pink eyes. Mr Brady has contracted the fabulous little infection. He's on antibiotic eye drops, so hopefully it will start to clear up soon. We just HOPE no one else in the house gets it, so there's tons of hand washing, separate baths for the boys and just all around paranoia that all our eyes hurt/itch/burn/etc. Ha! Gotta love weeks like that!

The good news is that I got good mail! I received Jax's genetic test results and EVERYTHING came back normal - woot woot! I didn't receive Brady's yet, but I'm sure it's safe to assume his will come back with the same. While they weren't tested for EVERY single possibility, it's a large enough array to assume that their development issues are due to their mono/mono twinning stunting their growth and causing their delays. We're still on the journey of figuring out exactly what their speech and language issues are, as well if there are any structural issues with their soft palates, but we should have answers to all of this within a month! The reason this excites us so much is because it gives so much hope that whatever the hurdle is (speaking, language, eating, growing, asthma, development delays), it most likely can be worked through and there's no fear of something else progressively happening. (Like finding out they have xyz and that means that a certain organ will fail later etc etc).

The other great news is that I received an approval letter for Jax's Medicaid for 2013 - already! I just sent in the paperwork a few weeks ago and it typically take 3 months to get an answer, I'm shocked! Of course we wish Jax didn't qualify for it (it's for children deemed medically disabled in WI with a medical and developmental need, and they would require nursing staff for daily care), but since he does still have those needs, it's nice to lessen the financial burden. It really helps with things like therapy (OT, PT, Speech, Feeding), orthopedic braces, medical supplies for his tube feedings and lung disease, medication, hospitalizations, ambulances and of course the continuous doctor and specialists appointments. The Katie Beckett Program has been our angel throughout this journey so far.

I feel like 2012 was the year of PAPERWORK for me regarding the kids. I had forms/small books for Medicaid, Brady's health insurance (we purchase it through the state), Genetics Clinic, Endocrinology Clinic, Feeding Clinic, Child Development Center, ENT Clinic, Urology Clinic, 3 hospitalization intakes/discharges,  an ER intake with Ortho followup, both kid's preschool intakes with ALL their medical files and this and that needing doctor's signatures - and then the more simple 1-2 page forms for eye checkup, dental checkup and hearing checkup. I'm waiting for the Cleft Palate Team paperwork to come in, but I have a feeling that it will be a lot LESS paperwork overall in 2013!!

Tuesday, January 1, 2013

Welcome 2013!

It's here, a new year! All of the hopes for greater things to come has arrived again.
The boys had a really good year of developments and health this past year. The last hospitalization and ambulance ride hasn't happened since last February, so I think things are really looking up. Of course I had hoped Jax would be further along with his oral feedings (and possibly tube-free) and that Brady would be talking, but I have plenty of other positive things to focus on and know that I'm proud of both boys for the strides they have made.
I think that the only heartbreak that I take away from 2012, is the passing of Les, and Jason lost his grandfather. It feels more real with a new year on the calendar.

...
We ended the year with an outpatient feeding session at the hospital for Jax on New Years Eve morning. I remembered while walking in that Jax was inpatient last year on New Years for lung complications with RSV and pneumonia - what a different winter already so far. Counting the blessings for sure.
Jax did well with tiny chunks of cracker, and wanted to please us so badly, but he's definitely still struggling with knowing how to manipulate food in his mouth with his tongue, which causes him to panic, but he's working hard at it.
Later that afternoon, the kids met all the neighbor kids at an indoor bounce house facility and they had a blast. They had a small NYE celebration before bedtime with all the kids next door and even had the cool activity of stamping shapes onto the floor of an entire room that was lined with paper. They ended the year with a lot of smiles, and we all start the new year with a lot of hope for continued progress and good health for everyone we know and love.