Monday, January 30, 2012

WE'RE IN!

We saw the GI specialist this morning and he officially signed off for Jax to be in the Feeding Program. He didn't like the lack of weight gain, but knowing it was from all the illness, he was happy to hear that Jax never needed an IV, which tells him that Jax's GI system is getting stronger.
He wants Jax to stay out of school this week for the best chance of not coming down with something new and then missing the program opportunity. Typically these doctors are very pro-"live your life normally", but since the program is one week away, and Jax's system is just recovering from some big blows, we all agreed it's best to keep him out of a public play group just for this week.
Ugh, that's SO much school that Jax is missing from the past month and the upcoming hospital stay. But his health and well being is most important, I know, I know!

Today and this week I'll be getting as much weight on Jax's skinny little body that I can, and also getting our leaking washing machine fixed, I know you're all jealous!

Sunday, January 29, 2012

Nice weekend

Yup, it was a nice family weekend. We spent a lot of time with the kids, and even attended our friend's Janel and Steve's engagement party on Saturday. We had breakfast out at a fabulous little local pancake restaurant this morning and the boys were pretty good.

Jax is counting pretty good now to about 13. I need to record him and attach here for you all, it's rather adorable since you know what he's saying, but the articulation just makes you smile.
His poor bum is pretty torn up from the heavy antibiotics that he was on, so we're in healing mode with that. Tomorrow Jax sees the GI specialist for a final exam before the feeding clinic next week (YES, already next week!), so cross your fingers he gets a passing score!

Brady gave me a GREAT surprise today (yes, that's sarcastic) and decided to explore a tube of diaper rash cream ON the living room rug... that's wool. He had it all over his face, legs and some of the couch. I had to google how to clean it, and while I got about 80% of it out, I can still see it. Grrrrr, it's rather hard to keep things nice when you have toddler twin boys, but this one was just pure curiosity of a product that hasn't been out in a very long time.

After Jax's clinic, we want to start pushing potty training a little bit more. Jay's sister told him to put the potties in the living room and have them watch a show while sitting on them. At some point they will go to the bathroom and we can celebrate in hopes they'll start getting the connection. Since the boys still don't seem to have any idea of how to MAKE their bodies do anything when they sit on the potties each night, I think that's the only logical step. Who knows, maybe in one month when I really want to start pushing it more, they'll be a little more ready then. Time shall tell! Ha, I won't hold my breath :)

**I had some pictures to show you all tonight, but our camera won't download to the computer. Sigh... always something, right? This camera needed to last another 6 months because we wanted to save up for a nice camera that we have our eye on! Such is life...

Thursday, January 26, 2012

Life is a roller coaster, huh?

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!

Tuesday, January 24, 2012

Good follow up

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!

Sunday, January 22, 2012

We're home! (again)

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, January 21, 2012

Saturday night update

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

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, January 20, 2012

Friday update

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.

Thursday, January 19, 2012

Hospital Update

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

(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.

Wednesday, January 18, 2012

We're home :)

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!!

Tuesday, January 17, 2012

Back in the hospital

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!

Sunday, January 15, 2012

Poop is still gross.

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!

Wednesday, January 11, 2012

Appointment update

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!

Tuesday, January 10, 2012

Watching a daily miracle

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.

Sunday, January 8, 2012

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

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...

Friday, January 6, 2012

Kick butt TUMMY!

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!

Tuesday, January 3, 2012

All good in the hood

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!

Sunday, January 1, 2012

We're home! Happy New Year!

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!