Jaxon and Brady's Journey

Life is a roller coaster, huh?

2012-01-26T21:35:00.003-06:00

Every time one of the boys do something super cute, I think to myself that I need to remember it to record on the blog.
Today's cute wonders from the mouth of a 3 yr old was the saying, "Toe Head Dow". Jaxon repeated this to me while pointing up at his toy bins. I thought about it, and sure enough, he was pointing at the bin that is full of Mr and Mrs Potato Heads and he wanted it down. He's piecing words together to communicate, and while other people would have NO idea what he's saying, we do for the most part! He yelled TOE! at Jason this morning, meaning he also wanted to hold a piece of toast like Brady and then promptly yelled, CHHEE! meaning he of course also wanted the cream cheese as well spread on top.

You can't help but smile.

I packed the boys up to take Brady to speech therapy today, and the boys went running out into the driveway when I opened the door. Today's temperatures were very mild around 40, so I let the boys take 5 minutes to explore the snowy yard before packing in the car. Brady ran really fast and then halted just before his foot touched the crunchy snow. He slowly bent down, took his mitten off, and ever so gently and lightly touched the snow with his index finger. At this exact whimsical moment... Jax came barreling from the right and kicked snow up to Brady's face. Ha! Moment over. Brady wasn't sure if he was upset (it was just a little bit of snow) and then realized it was hilarious.
I grabbed them both before an all out snow flinging war could erupt!

So, here are two NOT so cute moments today.

I picked Brady up from Nr. Nick (his speech pathologist) and had a little chat about progress. Or I should say, my feelings of the lack of progress that I'm not seeing. I was given some papers showing the sounds that Brady is making when he's modeled them, and of course the ones he's not. He always says a sound like, "Gake" from his throat. Lots of G's and D's. The therapist told me that he's REALLY leaning toward the diagnosis of "Apraxia of Speech" for Brady. It's a motor speech disorder that requires a lot of work to overcome. This is of course very different than a speech "delay" that the boys are currently being treated for. With a delay versus a disorder, you have the hope that it will just click some day and the child will just take off. With this disorder, it will be a long, long process and hoping it won't be a lifetime challenge where other people will notice something is off in a social or professional setting. You know, all the things parents worry about for their kids.
I just can't imagine knowing what I want to say, but not being able to say it. Can you imagine? He's perfectly healthy, social and smart... there are just very few intelligible spontaneous words. His receptive understanding is there, even more so than Jax's, but the expressive just doesn't seem to be coming. He needs more intensive help, and I know this. We will get it.
(sigh)
I know this isn't new news, but it was sitting nicely in the back of mind this month, and it's being pulled to the front again for me to research my little heart out over.
Apparently this disorder is on the rise in children, and there's a lot of research stating metabolic reasons that are adding to this. I kinda would like an "official" diagnosis before I start going too far into all this, because I already want Brady's doctor to order him a metabolic work up now to see if he's deficient in any areas adding to this brain-to-mouth issue he's having.
I just wish something would be easy or effortless for them going through these first few years.

moving on.

The other not so great bit of news is that Jax is pukey tonight. He was a bit gaggy today, but he held all 3 meals down during the day. I put him to bed tonight and jumped in the shower knowing I had a long night of paperwork ahead of me, and when I got out of the shower, I just had this feeling that I needed to quick check on Jax. The poor kid had vomit everywhere (INSERT TOTAL SAD FACE).
He kept puking, so I helped him with that and then changed out his pj's and his bed. I was really freaked out for a moment because there were brown chunks in his vomit, which was a bit more than I was comfortable with (meaning dried blood in his vomit). I was about to the call the doctor on call, but then I realized he had a little bit of chocolate milk before bed time.
I'm assuming that was mainly chocolate milk that I was seeing, so I decided to see what Jax did from there before calling a doctor and saying that my son who is healing up from pneumonia and RSV is vomiting possible blood, obviously I'd be told to go to the ER. I think if I really thought it was, I'd be there right now without even bothering to call the doctor!

Thankfully Jax has been asleep for the past hour now resting very peacefully, so I will see how he is tomorrow. I was hoping that maybe I just pushed his pump rate to fast today, but I remember Jax gagging up some whateverhehadinhisstomach this morning before he even got his first feed, so I assume he's just not 100%. Granted there WAS a little dried blood in his spit up this morning, but it was the typical amount he has when he's on so many breathing treatments with an illness (dries out his sinus').
No worries, I have my eagle eyes on that kid. If he still has an upset stomach tomorrow, he will buy himself a date with the pediatrician before the weekend. Otherwise, both boys were wrestling, playing tag and come to think of it, Jax ran around the kitchen island about 15 times before bed pretending to be a train... I'm sure that didn't help an unsteady tummy!

Good follow up

2012-01-24T15:09:00.001-06:00

Jax's health is greatly improving. The doctor said he sounded good today, and to just keep up on his meds/treatments through the course. He has the liquid steroid and antibiotic, and then the inhaled steroid Flovent that he takes daily regardless, and the Albuterol inhaler until his cough is gone. Jax has to stay in a bubble this week, so no school since he's really receptive to illness with his immune system down. No problemo.

I received a call from the feeding clinic at Children's asking to set up an appointment for Jax to see the GI specialist on Monday for an exam. Ohhhh this makes me cringe since Jax lost a pound last week with his illness. The poor little bean only weighs 23.5 lbs - EEEK! That's the weight of a 15 month old baby, hmm, I think Jax may have actually weighed that at 15 months now that I think of it!

Yes, now I will have anxiety about this upcoming appointment.

The boys are back to their monkey-ways of arguing, wrestling and all around crazy little guys. To me, it's the sound of health!!

The boys patiently waiting by the door this morning to go to the doctor.

*I looked it up, and Jax weighed 22lbs at 15months old, and even then he was a bit underweight. Needless to say, we've had weight struggles for the past 2 years!

We're home! (again)

2012-01-22T14:43:00.000-06:00

Yes, you read that right, we're home!
Jax needed to keep a half feed down today, and he did pretty good, so we moved the show home. Hopefully he'll keep some food down for us here, but his energy is definitely up. Nana Jayne visited at the hospital this morning and brought some "shake-n-Go" cars which were a big hit with Jax. They definitely kept him busy during the long discharge-process.

We'll watch him closely and he'll have a follow-up with his doctor either tomorrow or Tuesday depending on how he does.

Now hopefully we don't see the hospital for another 3 weeks until the feeding clinic starts!

Saturday night update

2012-01-21T22:05:00.000-06:00

Jax had a much better afternoon than his morning. He was sitting up and playing and doing fairly well given his morning.
Krista came by with some coffee and later Shannon came by. It was nice to see some friendly faces. Jax and Krista actually had a blast together playing with dinosaurs and saying funny words like "booger".
Around dinner time Jax's 02 sats were back down in the low 90s and his cheeks got all flushed. Then he started vomiting again, so he's switched back to just Pedialyte on a slow drip over night. He has pretty bad diarrhea, which is most likely due to the antibiotic (Augmentin).

Jason is staying with Jax tonight and I'm home doing some laundry, paying some bills, cleaning out humidifiers and getting the house situated for when the boys come home. Oh, and getting a little sleep before going back in the morning.

I'd love to see Jax come home tomorrow, but I'm not sure what the requirements are this time around to get him home, so we'll see. I hear Brady is having a blast terrorizing Rachel's dogs and soaking up tons of attention. I miss that little bean and hope to see him tomorrow.. He's not allowed up at the hospital because Jax is in isolation from all kids.

As always, I'll update when I know more!

Here is sad Jax on Friday. Poor bean was so miserable.

Jax finally smiling today with Krista and Shannon visiting.

Saturday morning update

2012-01-21T07:10:00.000-06:00

Jax had a rough early evening last night. He was breathing very fast, whimpering and started burning up. He spiked a fever and really couldn't even move.
I moved Jax to the chair with me to get him to sit up a little bit, but he just fell asleep breathing super fast. I transferred him to his bed while the nurse administered Tylenol and I had a conference wtih the doctors.

They all suspect pneumonia for sure at this point with the obvious decline he's having. We could tell he was much more comfortable once the Tylenol set in.

Overnight his pulse-ox alarm went off a few times (that means his oxygen sats were dipping below 90) but then this morning around 5am, it was constant. The problem is that each time the alarm goes off, it startles Jax awake, and then his sats go back up around 92, then he'd fall asleep and as soon as he'd get into a deep enough sleep, it would happen all over again. So finally around 6am, I put a movie on and sat with him to relieve him of the awful cycle.

The docotor came in around 6:45 to review him, and Jax was trying to vomit at the time. The doc said that his breathing improved from 150 to the 130s for a little bit overnight, but now he thinks it's back up again. He also said, this can't be complications from RSV being this tough on him a week later, so it's definitely pneumonia.
Poor bean :(

Hopefully today gets better!

Friday update

2012-01-20T14:47:00.000-06:00

Jaxon did ok overnight. He hasn't turned the corner yet, but he's stable. The doctor I met with today said the Radiologist diagnosed Jax's X-Ray with "possible beginning stage of pneumonia", so who knows. The antibiotic Jax is getting will thwart any bacteria in the lungs, so he's covered regardless.

Jax is still breathing fairly fast, but his sats are staying acceptable to not require oxygen. Although he did de-sat during his nap a bit, so I'll be interested to see if he can go overnight tonight without needing oxygen.

We started giving him half strength feeds at 1pm today and by 2:30 he puked it up. I think they'll try his next feed at 5, otherwise he'll be getting Pedialyte through the night.

So, we're just monitoring him with support to see how he does.

Hospital Update

2012-01-19T21:45:00.000-06:00

Jaxon's X-Ray doesn't show pneumonia, so he doesn't have to start IV antibiotics, but he did start a nasty ear infection, so he will be getting antibiotics through his tube with Pedialyte tonight over night. He's still on the Orapred steroid and getting Albuterol every 4 hours, and Flovent every 12 hours. He's just having lung complications from the RSV, which isn't surprising given his lung disease history. I'm just so thankful he didn't get this as an infant.
The good news is that the antibiotic they're treating Jax with for the ear infection may help thwart off bacteria from settling in his lungs. There's one positive! I guess another positive is that he's keeping liquids down, so his GI system shows nice strength compared to in the past. Wait, I have more positives... Jax still hasn't needed oxygen during this nasty virus. He needs monitoring and some help with medication, but he's holding his own.

He's resting comfortably now and I'm going to try and get some rest as well since I know I'll be woken up with Jax during his rounds tonight.

I'll update more tomorrow!

Admitted to hospital again

2012-01-19T16:46:00.000-06:00

(total sad face)

Jax's lungs didn't respond to Albuterol, and the pediatrician is admitting him back in. He'll have an XRay to check for pneumonia, and we'll go from there.

I'll update this evening when I have news.

We're home :)

2012-01-18T09:32:00.001-06:00

Jax's viral swab came back positive for RSV. I love having an answer!

RSV is basically a bad upper respiratory cold that can be lethal to infants, and especially newborns and preemies. The boys had monthly immunizations from this virus when they were infants. RSV is a very common illness that is spread around schools and daycares, so the boys were bound to get it. I'm just glad it was as late in age as it is.
The good news is that it only gave Jax one night in the hospital without any need for oxygen, so that tells us his preventative is doing it's job right now. He is back on the Predisolone steroid for the week while he fights the virus. He's getting his Albuterol treatments as well, but he's fever free and keeping food and liquid down to be hydrated. I'm bringing Jax to the doctor in about an hour for his follow up to make sure he's on track being home.

So this makes sense why Brady was reacting odd to a "cold" as well. Since Brady doesn't have underlying medical problems, he'll purge this like a normal cold, although it did go into his ear, which stinks that he's on ear infection #3 now in the last 3 months.

I'll update if anything happens at the appointment this morning that's worth repeating, otherwise we're in healing mode around here. I will update details about the feeding clinic appointment and swallow study in the next day or so.
Brrrr, bundle up, it got so cold suddenly!!

Back in the hospital

2012-01-17T09:40:00.001-06:00

I have so much to write about Jax's Swallow Study and our appointment with the feeding team yesterday (all was good), but we had bigger events take place last night.

Both of the boy's colds got pretty bad, and poor Brady was just miserable and didn't even want to get off the couch. He actually was in his bed for a "nap" from 12-5pm, so that bothered me. Jax was decent in the morning while we were at the feeding clinic (slight cough, runny nose), but when I got him home, he crashed for a 2 hour nap. I figured he was just tired from being up vomiting a few times the night before, but when I got him up, he was lethargic and had a sudden temperature of 103.8. He had labored breathing, so I gave him Tylenol and Albuterol. He was also vomiting off and on.

I called his pediatrician to ask for her direction of what to do, and she said she was booked solid (it was probably 4 pm by this point) but Jax had to go to Urgent Care with the sudden temp spike and a need for Albuterol already with only 5 days off from his steroid course and last illness.

I took both boys in, and had the doctor look at Brady since he wasn't reacting typical to a cold either. Well it turns out that Brady has another ear infection (seriously!) and Jax had to have another chest XRay since the doctor could hear some issues in his lungs. Jax vomited all over me about 4 different times while we were there. The chest XRay came back and the Urgent Care doc said he had pneumonia and she was on the phone with our pediatrician.

Since Jax couldn't keep his meds down he had to be admitted. Jason is in Texas for work, and it's getting late at night at this point, so I was kinda stuck with the boys. Dennis came to the hospital and brought Brady home to put him to bed around 10pm, so we could check Jax into the hospital upstairs (I go right to the hospital's Urgent Care, so there was no "transport"). Jax had to be in isolation, so Brady couldn't come up to the room with us.
I turned the lights out in the room we were in at Urgent Care, and tried to get the boys to rest until we could all move onto the next phase of the night.

I got Brady sent on his way, and we transferred Jax upstairs to be admitted. Rachel is at the house with Brady today and getting him his antibiotics. Jason will be home tonight to take over.

After a few hours with doctors up in Jax's room, they said they don't know or assume he has pneumonia from, and think it's possibily some sort of virus they see in his lungs. A big concern for them was his high fever and apparently he had a few times of a very high heart rate (150) so they swabbed his nose to search for some virus'.
The docs agreed to let us try a very slow Pedialyte pump on him (1 oz an hr) to see if that would hydrate him. The doc said that if he pukes, or he doesn't pass the hydration test today, they'll IV him. I'm so glad they listened to my 2am plead, because Jax hasn't puked on the slow pump so far, so we'll see he passes their hydration tests. IV's with Jax are unbearably awful, so I'm really hoping we can avoid it!

So we sit here and wait to see if any answers come. I'm hoping we can both snooze off and on today to catch up on some sleep. The weather outside looks awful, so we may just hybernate in the cozy room together today!

Poop is still gross.

2012-01-15T09:34:00.000-06:00

Jax is still kicking butt and taking names with is pump rate. It's so nice to have such quick feedings!

Nothing too exciting has been going on to report, but last night was quite the interesting bath. I put the boys in the tub and started doing my routine of folding their laundry to put away while they played in the water. Jax refused to sit down and kept reaching out to me. I kept telling him to sit and was ignoring his request for me to get him out. He kept yelling, "PO!", which I thought was "pod" and I explained him that he doesn't get the IPod when in the tub or getting ready for bed.
Well finally I grew tired of the non-stop whining, so I just started washing him up while he stood, until I saw it.... um, PO meant POOP. Brady pooped in the tub and Jax apparently and understandably didn't want to sit in toilet water!

MOTHER OF THE YEAR!

So I tried to scoop out the poo, and Jax started picking it up - G.R.O.S.S.
I pulled both boys out and Jason filled our tub up with water and the boys had a bath in there. The last time we put them in our tub, they were scared, but this time, they treated it like a swimming pool! They loved it thankfully. The other tub was disinfected and I can still honestly say even after 3.5 years of double diapers... I still think poop is gross. Jason is even worse with it, so you can imagine the amount of cleaner used in that tub.

Brady has started a nasty cough. Everyone together now... AWESOME. There's no way Jax won't start coughing soon, but all I hope for is that he's healthy enough to take his swallow study at the hospital tomorrow and to meet with the feeding team to review his clinic stay next month. He's getting his increased daily preventative, so I'm feeling confident he shouldn't experience lung "troubles", but he does need to be non-congested for his testing tomorrow, so please cross your fingers!

Brady being Brady!

The boys favorite thing to do with the doll house is to ring the door bell and let each other in.

We took the boys to Red Robin last night and they were pretty good. But here's Jax on his Ipod and Jay watching a playoff game. Two peas in a pod. Notice Jax's chocolate milk. We cut the straw down and he drank a bit! Otherwise, watching a movie on the pod was the only thing to keep him entertained while we all ate. Someday...

Our little fishies in our tub!

Appointment update

2012-01-11T14:52:00.000-06:00

Jax checked out great at the appointment - woot!

So I had a talk with the doc about Jax's great tummy progress. She wants to see how he does after tomorrow since tonight is his last dose, even though it's next to nothing of a dose (1.5mls). She is VERY interested to see if the steroid is helping him with his GI issues. She's contacting Jax's GI specialist to discuss the possibility of the steroid being the "answer" or if Jax's body is just maturing and getting stronger on its own. She said she has seen this sort of steroid (anti-inflammatory) help many patients for various reasons. She said that many people with Chron's Disease or Colitis use steroids to make their intestines feel better, so this wouldn't be too far fetched.

I made the comment that he couldn't possibly be on a steroid like that long-term, and she said he absolutely could if the benefits outweigh the risks, and the risks are watched. Relieving Jax of GI pain and volume intolerance/vomiting so he could get tube-free is a pretty big "value" she said.
So we'll see.

Also, she said he's pretty much under complete "Asthma" protocol now. She said she's seen children grow out of asthma, but not typically the ones who have underlying lung issues like this from underdevelopment. I asked if his lungs still looked "damaged" the way they did on the X-Rays that Jason and I saw when Jax was an infant, and she said they look "asthmatic" (Jax had a scan at the hospital).
She thinks the higher dose of his preventative is good for the winter months to help control the symptoms. I asked if we should be doing anything different, and she said to just keep his room as clean as possible and change his bedding every few days. She said to keep pets out of his room, and I said we don't have any anymore, but he stays at friend's houses that do. She said no problem, just vacuum and dust the room he'll sleep in and close the door to the pets and always pack the inhaler. Being around them shouldn't be a big deal.
I can handle all that! I'm just glad something is DIFFERENT (his inhaler dose) so we may not get to such a point of lung issue when sick again.

So we'll see how Jax does over the next few days with stopping the Orapred (Prednisolone) and gear up for some late snow coming tonight - where has the snow been this winter?? The boys will love to use their new sled!

Watching a daily miracle

2012-01-10T13:07:00.001-06:00

I can't get over Jax's progress... like I'm having dreams about him eating. I keep catching myself daydreaming about these things and need to remember to take a step back. Of course my hopes have gotten up with the upcoming feeding clinic, but I need to keep expectations in check... to protect my nerves more than anything!

Jax's pump rate is at 160mls/hr and still rising. It's just amazing. He asks for chocolate milk every day, and while he only sips it, but may take an ounce or two, the fact he's REQUESTING it daily is awesome. He grabs his cup and yells, "CHA MMM" :)

You know how some kids grab onto a phrase and say it non-stop every day? Well Jax says, "whuz da?" all day, every day asking what things are. I try to stay patient and answer every question, even if it's asking what a crack in a piece of the wooden floor is, or what a thread sticking off my shirt is.

The boys did well at school and therapy today. Brady is starting to always point as his mouth when attempting an "mm" sound as part of his therapy. I got a notice about 4k for the boys next year, but am a bit confused on how we'll handle the situation since we don't want the boys in kindergarten until they're 6 due to obvious developmental delays and their size. Well Jax's program is ONLY for 3 yr olds and would have to go into 4k with special needs support next year. Hmmm, I know it's best for the boys to wait an extra year before doing all this, so Jax's teacher (who agrees with me, but said she can't make the request) is getting the district's phone number to discuss this situation for the boys. The boy's original due date was mid-September, which would put them in kindergarten later anyway, so hopefully they'll listen to me and work with me on this one. All the therapists and Jason and I agree... the boys need an extra year for best academic achievement given the situation. Brady's speech therapist told me she really thinks one more year before 4k would be best for Brady as well. So stay tuned on how that all turns out.

Otherwise, business as usual. I have one week to see what Jax's tummy can do and then he has his swallow study at the hospital and his pre-inpatient meeting with the feeding team to set the "goals" of the program. EEK!

**Random question to the Internet world... has anyone's child experienced better digestion when taking corticosteroids? Jax is about done weaning from his Prednisolone, but also on a much higher daily preventative inhaler (Flovent) and I'm just curious if any of the anti-inflammatory properties could be attributing to his major tummy-improvement?

The boys enjoying the game Hi-Ho Cherry-O, which is great for colors, counting and fine motor skills.

Ahhh yes, the gift that reminds of hope...

2012-01-08T20:48:00.000-06:00

That was a quick weekend!
Jason was out of town until late Friday night, so the boys and I just hung out with nothing exciting to report (which is great in our world!). On Saturday I attended a friend's baby shower in the afternoon and then that evening Jason worked as a blackjack dealer for a friend's entertainment company for a corporate party. He does this each year, and it's all for fun (and a nice little extra $$). So Jason and I each switched off half of the day with the kids so the other could attend their scheduled activity.

Sunday was really nice and laid back. We hung out with the boys in the morning and then Jason and I teamed up to clean the house. It only took 1.5 hrs doing it together all at once like that - AWESOME!
I was able to grocery shop and Jay was able to go to the gym, and then we had the Bonins come over for the Steelers playoff game and to have our late Christmas celebration.
Poor Shannon got called into work in the middle of dinner and had to leave (BOO!), so we missed her. But we got a lot of baby-time in with Drew and Kelsey, which was a lot of fun. It's always fun to see what new things babies develop so quickly.
Tomorrow kicks off another week - hopefully a very non-eventful week! I'll be working on Jax's pump rate even more to see what he's made of... so far so GREAT!

Kelsey and Craig playing with the tunnel of fun.

Drew found his TV mates!

Jason and Craig in their true form of watching football together... I wish I took a picture of them at the end of the night when they each had a baby snoozing on them in their jammies.

I opened this gift from Shannon after she left - OMG, talk about a gift almost causing tears. It reads: " HOPE is the beacon that will guide us safely through the storm". I can't decide if I want this in my bathroom next to my sink so it's the last thing I see at night, and the first thing in the morning, or at the kitchen sink so I see it multiple times a day... hope really has gotten us to this point... Thanks Nanners...

Kick butt TUMMY!

2012-01-06T19:51:00.001-06:00

We've had a good healing week, although Brady had a slight runny nose this morning which made me want to crawl out of my skin thinking a new cold has already come into the house. But I haven't seen it since this morning, so maybe it was a fluke.

The boys had good therapy and school days this week. Jax drank an entire yogurt smoothie with his feeding therapist. That's 3 oz... that is the most he's ever consumed by mouth in a sitting in his entire LIFE! His tummy is doing amazing and I have his pump rate up to 150mls/hr (that's 5 oz an hour), the fastest he's ever been! Mind you, he was taking 3 hrs for a pump-feeding just a few months ago, and now it takes about 1hr, 15 mins - HOLY COW! And he's still increasing the rate each day, so rock on Jax man!
Tonight was Jax's last day of antibiotics and he has about 5 days left of his Orapred steroid. His last follow up doctor appointment is Wednesday and hopefully everything checks out well. I think it will.

I made sure to take a few pictures for y'all...

We used our Christmas money to buy the boys used IPod touches off Craigslist. Well, they're so entranced with them that we have to actually limit their use! They play preschool puzzles and match up games as well as watch their movies on them.

Jax "helping" me cut up veggies for dinner last night.

After I was finished preparing the meal, I turned to find this little piece of art and Jax hiding behind it!

The boys finding a way to play each other on the air hockey table.

Jax likes to pretend to eat most every meal now. I gave him some cereal to play around with while Brady ate breakfast. In the past, Jax never has had any feeding therapy in the mornings because he was always so sick before 10am. I love seeing him want to touch food!

All good in the hood

2012-01-03T21:57:00.002-06:00

Things are going well. Jax had his follow up at the pediatrician's office today, and we can start to ween him off the Orapred steroid tomorrow. It should take about a week and then he'll have his final follow up with the doctor next week Wednesday.
He's back to his spunky self and back to running the household and making us crazy ;)

The boys love sitting on the potty, but they don't know how to actually make themselves go. Tonight Jax made grunting noises like he was trying to tell his body how to pee, but he couldn't figure it out. He looked at me and said, "all done". Hey, we try. We've decided to let them explore the potties and sit on them, but we're not officially training them. They're just not ready, which is fine. They're working so hard on other developments right now, so I'm sure it could be confusing and overwhelming.

Brady had his first extra one-on-one speech session today with his therapist from the school district. I got to sit in on it and observe. Today focused on "monkeys and marbles". A lot of repetitive M-words. His therapists are amazing, so hopefully he'll start to pick up some skills to help the words come.

*I need to say a big THANK YOU to Auntie Rachel and Uncle D for taking Brady during the hospital stay. It made things much easier for Jason and I to focus on Jax and keeping each other sane through everything. Also a thank you to Shannon for the visit on Saturday. Even though Jax wasn't the most cheerful, it was nice to have another soul in the room and to take a coffee-walk. And thank you to everyone for all the love and support with emails, texts, phone calls, social media - we feel so loved, thank you! Jax pulls through every time, our little fighter!

We're home! Happy New Year!

2012-01-01T20:26:00.001-06:00

Yay, way to start the new year!

Jax did well last night (Saturday night) and didn't require any oxygen. He was able to push his Albuterol need up to every 4 hours this afternoon, and he only vomited once with all the extra fluid and food, so he stayed hydrated. We were able to get him home just in time for bed tonight.
He's getting Albuterol every 4 hours, Orapred (the luquid steroid) every 24 hours, Flovent every 8 hours and Amoxacillin every 12 hours (for the double ear infection). His energy is back and he's getting back to his willful ways!
I'll be bringing Jax back to see his pediatrician on Tuesday to see if we have to continue the steroid any further and to have a general check up.
One thing that struck us funny as we were going over discharge papers with the nurse was that the hospital diagnosed Jaxon with "asthma" along with his Chronic Lung Disease. We always knew that was a possibility since Jax's lung issues in the NICU. I asked the nurse if he was officially diagnosed this, and she said that Jax was under "asthma protocol" for the hospital, but his doctor will have to give the "final" diagnosis. So I'm interested to see what the doc has to say on Tuesday.

Well, we're SO happy to be home and plan to ring in our own new year tomorrow with taking down holiday decorations, doing some much needed (ohhh it's needed) cleaning and grocery shopping, and just really enjoy being home together! Happy New Year everyone!

Hospital Update

2011-12-31T20:56:00.000-06:00

Jax needed oxygen to get through the night last night (Friday night), and then I woke up around 2:30am to him coughing badly. I was sure he got his Albuterol treatment from the nurse at 2am (since I knew he needed them every 2 hours and I had figured out all the times in my head) so I felt concerned. I called the nurse and she told me they changed the orders to give it to him every 4 hours to see how he would do.
Really? In the middle of the night when he is on oxygen and in distress? Mkay, no.

So clearly the "respiratory" guy came to check him and agreed he still needed every 2 hours, and after that treatment, Jax settled down and got a little sleep. As much sleep as one can get when having a nebulizer treatment every 2 hours.

This morning Jax didn't seem to want to get up. He failed his first urine test (they test the concentration of his urine from a cotton ball in his diaper), so they were starting to talk about needing his fluid increased to keep up. Jax took a 1.5 hr nap in the morning and then Jason came for the day. They decided to increase the rate of the Pedialyte to get his fluid intake up. Jax puked a few times on and off during the day, but we were able to space his Albuterol need to every 3 hours. Jax failed his second cotton ball test and now he's on the clock to get better otherwise he'll get IV'd.

We pushed up his rate a bit on the fluid and added a small amount of food to it hoping it would help his energy level. He did well this afternoon and early evening showing a better cotton ball. Although Jason just told me Jax had a large vomit, so we'll see how his hydration tests tonight and in the morning. There's starting to be a lot of dried blood in his vomit. We're all assuming it's from so many breathing treatments.

Jax wasn't very high spirited today. He only sat up a few times to play with a toy briefly. He sat in the chair a few times with us, but ultimately kept wanting to lay back down in the bed. He snoozed off and on, but really just laid there with his blanky. I stayed until he was in bed tonight and came home while Jason takes the night shift. I haven't slept in two days and will hopefully get re-energized this evening and get back early tomorrow morning.

So, Jax needs to be stable in two areas to get home:
(1) He needs to stay hydrated with only the use of his tube.
(2) He needs to not require oxygen while sleeping.

I think we'll know pretty quick in the morning if he's going to be staying.

And what's a hospital stay without Jax's classic hair washing cap moment. Too bad he's super sad in this one :(

Ticket to the hospital

2011-12-30T20:25:00.000-06:00

We've had quite the last few days. Last night, Jax wasn't responding to his Albuterol treatments and he really worried me. I checked his O2 levels and it wouldn't get out of the 80's. I called an ambulance and texted Jay (he was in Missouri). Jay called our neighbors (who is a doctor) and they were there quick. Our neighbor stayed with Brady and Jax and I were whisked away to Children's Hospital.

Jax would do well with their Albuterol treatments, but soon enough start to decline. His chest X-Ray was clear, so their thought was that Jax's Chronic Lung Disease was causing him to not respond well to the virus (which was the original thought from the doc the day before). They did see that his other ear infected, but that wouldn't be the lung issue. They gave a liquid anti inflammatory steroid (Orapred) that seemed to help, and got him to get his O2 sats up in the mid 90's. After a few hours, they let me take him home (my neighbor threw Brady in the car at 3am and got us), but I had to take him to the pediatrician first thing in the morning and give Jax that liquid steroid for the next 4 days.

Well, at this point Jason is catching the first flight home this morning, and I already have the boys packed up to get to the doctor. Jax did well at the appointment, but the doc wasn't pleased with how bad his lungs responded to this cold. She told us to stay the path of Albuterol, the antibiotic and the new steroid. He should not show any further decline.

Fast forward to after nap time and Jax couldn't stop coughing and vomiting. Jason and I held him down to administer Albuterol, and it didn't help. This was about 2 hrs after the last dose I had given him prior.

I took him immediately back to his doctor and he was down right miserable. His O2 was back down to 88-90 and his energy was gone. The doc didn't like that he needed Albuterol so often. The little guy bought himself an admission to the hospital!

So we're here now. Rachel and Dennis took Brady, and Jason brought Jax and our things. They have Jax on Albuterol every 2 hrs to keep up with him (hmmm, how to sleep?) and a slow Pedialyte pump overnight. Let's hope he keeps that down so we can stay away from the dreaded IV!

Please send good thoughts so that we can be out of here soon, and pray for the hospital staff since I'm tired enough to possibly go bat poop crazy on them if they wake him up more than necessary - love teaching hospitals!

Another right ear infection, just on a different child.

2011-12-28T16:42:00.002-06:00

Oh my goodness, it just never ends lately. Jax has been responding to the cold that Brady gave him pretty good. He only threw up once on Christmas night and has never had a fever over 99. Last night his coughing started to pick up and the puffs of Albuterol that Jason gave him from the inhaler didn't seem to help. I hooked up the nebulizer and filled it with liquid Albuterol and that seemed to help him get through the night. I didn't like the sound of a few of his gagging coughs, so he bought himself a doctor visit today.

The doc found an ear infection and fluid in the other ear. She said his lungs were free of fluid, but he was on his way to lung issues with this cold if we didn't get it under control. I have tripled his FloVent steroid right now and hope it helps protect his lungs. The antibiotic he's starting tonight may help fight bacteria away from his chest, but that's not a guarantee.

So, we just need to give him these steroids and hope he can fight this off without it getting worse in there. The doc said he needs to get into the ER if our Albuterol efforts ever don't work in the evenings (which we already knew that) and she wants to see him back in a week regardless to discuss his lung medication. She doesn't think his nightly steroid is "preventing" well enough for him to wheeze this easy with a cold.

I'm pretty sure this fall and winter has been the worst with colds! I'd like to go back in our bubble now!

I'm also in the process of filling out insurance paperwork that's up to my eye balls. It's renewal time for Jax's disability Medicaid. You'd think I'd be used to the 15 page packet and all the reports I need to collect from every therapist, doctor, specialist and now teacher, but it seems so odd that I have to include these and also sign over all rights to records that they'll retrieve themselves. We have to give just short of a DNA sample it seems, so how in the HECK do people get away with Medicaid fraud? I know our program is for children and it's a private program that doesn't go by income, so maybe there's a different process for straight Medicaid, but we even get a home-visit to make sure the house is nursing home capable and to see the child. Either way, the program has saved our financial lives, so I will continue to gladly give them whatever they request!

I'm also filling out insurance papers for myself since my insurance premium is going to double in a month - isn't that randomly nice? The reason stated is "new medical technology". Say what? I"m pretty sure I'm not using any new medical technology since if I did need to, I'd assume my individual insurance wouldn't even accept me.
Jason's company offers a family plan, but doesn't contribute any money toward the premium, so at full cost to us, it's OUTRAGEOUS. We're talking $1k/month out of pocket. So we buy mine as an individual (thankfully I'm healthy enough to qualify) and we buy Brady's through the state. Did ya'll know that you can buy your child's medical insurance through the state of WI if your employer doesn't contribute? Even at paying full price for Badger Care (which is the bracket we're in), it's still cheaper than individual plans (of which Brady wouldn't qualify for since he was a low-birth weight preemie, crazy huh?).
Ahhh yes, medical insurance. Good times. It's also neat to deal with 4 different insurance plans in one house. I guess we need to be thankful that we all have it one way or another!

Christmas wrap up!

2011-12-26T17:09:00.002-06:00

Hello and Merry Christmas from us!
I've been trying to update the blog for the past 24 hours, but I was having computer troubles - and now I'm all good in the hood again.

Last week we attended Grandma Lettenberger's funeral proceedings. The gathering was sad, but the family-time was amazing. Brady's cold was taking a turn for the worse that day and I was really starting to feel it as well. By the time Brady got into bed at his Nana's that night, he started a fever again - and you all know what that means...
Jason brought the boys home a day early and he ran Brady to the doctor, and yes... an ear infection. That's 2 in the course of 6 weeks and he's only had one before all this, how strange! He is now on day 4 of 5 with his meds and doing a bit better, but that runny nose just won't go away.
I felt really sick on Christmas eve night and completely lost my voice by the end of the night. I still sound really horse. Poor Jax has picked this all up as well and his tiny little man voice is horse as well. I've got the humidifier going and the Albuterol on hand, so let's hope that's all the damage this will do him.
Other than illness hitting at the most inopportune time, the holiday was really nice. We were still able to drive up to Kewaunee to see my family, and saw some of Jay's family on the way down. Christmas day was a busy day with both sides of our immediate family visiting - good food, people and of course, gifts!

Boys opening gifts with Great Grandpa Wally and Nana Jayne.

Great Grandma Laura putting the mittens that she made on Brady.

Bumpa Les and Jax.

Grandma Carol and cousin Karl.

Grandpa and I

Great Gma and Gpa Sternitzky with the wiggly boys.

My tall cousins!

Aunt Beth and Uncle T with smiley Jax.

Uncle Jim, Aunt Colleen and the silly boys.

Josh and Drew (cousins) with the boys.

Performing skits and the Twelve Days of Christmas at the Hoffman's.

Jay and Rick doing their best impression of the 'Twelve ladies dancing' as their part!

Grandpa Klingeisen with some of his grandchildren and great grandchildren.

The boys on Christmas morning.

Very excited!

Uncle Adam playing Santa and handing out gifts - cool scooters!

Christmas scene

Nana and Bumpa with their grandchildren Christmas day.

Jax trying on Anesah's cheese head.

Nana and Papa with their grandchildren Christmas night.

Jax cuddling up to Anesah to watch her play on her IPod.

Uncle Clint taking one for the team and letting the boys "help" him play air hockey against Aidan.

Football tackling!

All the girls.

Busy busy, and a little sick

2011-12-21T20:45:00.000-06:00

We've had a whirlwind few days this week. Brady had a fever last weekend, and it turned into quite the cold this week. I have now caught it and feel super lousy. I don't know how likely it is that Jax won't get it, but here's to hoping.
We all attended Jax's Christmas party at school this morning. The boys got to see Santa again, but this time Brady was terrified and Jax was fine. When Santa came into the room, Brady started crying and Jason had to hold him away in the back. Jax went up by himself to get his present when his name was called so I got a quick photo! Brady's name wasn't called until the end thankfully, so at that point, he had warmed up and walked up to Santa with me and even gave him a hug. We assume Jax felt more comfortable with since he's used to being there and he knows a lot of the people that were there - a comfort thing I suppose!
Tomorrow we'll be leaving first thing in the morning to attend all the services for Grandma Lettenberger's funeral. Jason is going to stay by his family with the boys for the night, while I come home to do the final grocery shopping, cooking and CLEANING of this stye of a house for the open house on Christmas day. I'll meet back up with them and we'll do our tour of grandparents and some family for Christmas Eve day and evening, and then come home to crash. I heard that Santa maaaaaay be stopping at our house that night for the boys, but we shall see!

I was upstairs for maybe 10 minutes putting away some laundry, and Brady did the following things:


Poured himself a bowl of goldfish crackers, which spilled (and crushed?) on the couch, and conveniently into the crack of the cushions.

Took out the two milk pitchers (the original milk container broke) and proceeded to take the covers off, dribble milk and do who knows what...

OH, try to pour himself a GLASS of milk, which I found shattered in the sink. Maybe the glass was sitting in the sink already? I have no idea. I'm glad it was in the sink since I didn't hear it break, but man... I'd love to be in this kid's head sometimes!

Jax getting his present from Santa. That's one of his therapists who held his hand when he got up there.

Cool books from the big guy!

The boys sitting in the classroom afterward waiting patiently for their juice and cookies with their neat twisty straws.

Remembering Grandma Lettenberger

2011-12-19T08:39:00.002-06:00

Our weekend has been extremely quiet. Jason's grandmother passed away unexpectedly, so you can imagine the heavy hearts. All my love and prayers go to the entire family while I try to preserve any memories I can for the boys.
Here are a few memories of the past few years...

http://www.legacy.com/obituaries/htrnews/obituary.aspx?n=genrose-lettenberger-genny&pid=155117550&fhid=14025

Where are the hiding places?

2011-12-15T17:49:00.001-06:00

Tell my kids to stop hiding things!
Brady broke into Jason's wallet the other day. I saw him with it, so I took it from him. The next morning at the airport, Jason noticed that all his cards were moved around and he was missing his frequent flyer card and a credit card. Ask me if I can find them at home... that would be a no.
Now let's talk about the ornaments on the tree. The boys don't touch the "tree", but rather, they love to play with the ornaments. Ask me how many are missing... a lot.
I have this image that I'll find all these random things some day in a really weird place when the kids are off to college.

The boys had their Christmas party at Health Reach today. They did much better this year than they have in past years. At first they refused to go in by Santa, but after they watched another little set of twins do it and get PRESENTS, then they wanted to. Shocking.
Jax had an amazing day of speech and feeding therapy with Mr. Nick. We also found out that he was approved through insurance for another full year of weekly speech on top of his feeding, so that was some surprisingly good news. Mr Nick said that kids that get 2 days a week at school tend to get denied any private sessions, so I'm glad to see we get the extra help.

Brady sorting through puzzles during our library visit.

Brady found a Santa hat during the party and wouldn't take it off! Maybe I should put one in his stocking :)

Jax saying "Bubbo POP"

Slam dunk Jax!

Santa photo! Can you tell Jax only cared about the present and wanted to be far from the people in red!

Craft time!

The boys making ornaments with another set of identical boy twins in plaid fleece shirts! The boys are named Jackson and Brian, how crazy is that? Jackson has a speech delay and his brother Brian needs a wheel chair to get around from nerve damage due to low blood flow. I was shocked when the mom told me this story! She asked about my boys and I told her our Jaxon was a reverse from hers and he has nerve damage in his GI system requiring feeding tubes so far. She shook her head in amazement. There were 4 sets of identical twins at this party, and we were the first of three parties (it goes by age groups). I guess the moral of the story is that sharing a placenta is the pits! (I say that with a half smile)

Broken tires, but not broken dreams!

2011-12-13T20:01:00.002-06:00

The boys and I had quite an eventful day today. Jason texted me at 5:30am telling me that he saw the tire on the truck flat, so he ran it to the corner gas station to fill with air for me before running to the airport this morning. I had to drop Jax off at school and then get to our neighborhood mechanic to look at the tire. I made it there ok, but the tire was definitely going flat again. Mind you, we just had it repaired a month ago for a nail in it.
Brady and I waited patiently (thank God for the sucker in my purse) and we come to find out the tire is irreparable. So I thought, "no biggy, we'll put on a new tire since we were planning to replace them in spring". Well, it turns out that you can't have one or two new tires and two old tires because of the suspension system... or something like that. Soooo, that was a surprise $1,000 bill we weren't expecting for a few months. Such is life!
I told the mechanics that I had to pick Jax up from school and I had no option than to bring the boys since Jay is in Texas for the day, so they overfilled the tire so I could run out and they were ordering my new tires in. I got the kids their food and some toys and we went back. We waited for TWO and A HALF HOURS because the delivery truck with our tires broke down - oh the irony!
You can imagine how the boys were for the last hour... oh my gosh, I'm exhausted from their non-stop antsy hands and curious legs.

On a good note, I got THE call today while we were sitting there. A feeding clinic coordinator called me and said Jax was next on the list to schedule for the inpatient intensive feeding program.... I was speechless! This is the thing we've been talking about for years, but it always seemed so untouchable. Now he's officially scheduled for Monday, Feb. 6... EEEK! I'm waiting for the official paperwork packet with all the information. All I know so far is that it's 2 straight weeks and I will be staying with him. I don't know anything else yet, and we'll have to figure out all our coordination of life for those 2 weeks.

All this is contingent upon Jax passing his swallow study next month, which I feel confident he will. It's never been thought that Jax has a mechanical issue with his throat (ie, he can chug water), so hopefully that all goes smoothly.
Now of course, I do still understand that if Jax isn't taking his feeds fast enough at that point that the program will be to start correcting his feeding behaviors and teach him how to eat with hopes he'll intake SOME of his meals by mouth (he currently, and always has taken 100% of his nutrition via tube). So I need to keep my expectations (aka - hopes) to that instead of a full force weening effort.

Jax has been kicking butt with his tummy lately and I have his pump rate close to 100 again. Cross your fingers we keep going!