Friday, April 30, 2010

Another ear infection

We brought the boys into the doctor this afternoon. We found out that Brady has an ear infection and we had Jax re-checked since he's still vomiting (he threw up his breakfast again today - this is day 10) and now he's coughing and has some wet breathing like Brady. The doctor thinks Jax is responding to the meds, but also thinks he has Hand Foot and Mouth Disease which is just a big word for a common virus among daycare children or public play areas, but it may be the reason for at least some of the vomiting. Jax has some raised bumps around his knees and some bright red spots on his bottom which I thought was really bad diaper rash from all the diarrhea. So back to the pharmacy we go!
The doctor thinks the boy's picked up a virus from being out and about on our trip and it's manifested into ear infections. She's hoping we'll see big improvements by Monday. I hope she's right and wonder how I can keep my babies in bubbles forever...

** Jax's weight is awful. He's now only just over 20lbs from all this weight loss. He weighed 22lbs at his 15 month checkup 6 months ago. Brady is only 21lbs 10oz - Jay and I think we'll have 20lb kids forever!

Update - Jax didn't keep his dinner down tonight either, so we'll be sneaking Pedialyte through his G-tube while he's in bed tonight.

Coughing

On Wednesday, Jaxon was not any better, but yesterday he seemed a bit more playful and only vomited up his first feed of the day a few times. Hopefully he's vomit-free today. I can hear some raspy stuff going on his chest that I'm not real thrilled about, and now Brady's cough has blown up to an all out hacking that almost makes him throw up. So I'm bringing the boys into the pediatrician's office this afternoon to get looked at. I'd rather be safe than sorry since the weekend is coming up and we don't need a visit to an Urgent Care or ER.
This virus is almost 2 weeks old and lasting forever, thank goodness Jason comes home from his trip today.

Tuesday, April 27, 2010

Three cheers for an ear infection!

Jaxon was up all night moaning in pain and gagging/coughing and a nasty runny nose suddenly since getting up this morning. I got him into the pediatrician this morning since I was fearing dehydration. She found an ear infection! She thinks that he picked up a nasty virus and it resulted in an ear infection which is why he was in pain and vomiting most in the beginning while laying down. He also has a small infection (barely visable) on his bottom from the previous diarrhea, so we'll be putting special cream on him especially with all the diarrhea he'll have now for the next 2 weeks on this antibiotic. He was prescribed Augmentum, which is a very powerful antibiotic. They want to knock this out as fast as possible because of the vomiting. Poor Jax tried to vomit 8 times while we were at the doctor. Mostly from being so upset with getting his infected ear checked and getting swabbed for strep throat. Jax is under dehydration watch for the next 24-48 hrs, so I'll be watching for the signs. If his vomiting remains at this same speed or worsens in the next two days, I have to bring him in for an IV. Needless to say, he's pretty much a big hot mess right now.

The doctor thinks Brady has the same virus, but obviously it affects Jaxon so badly. Rachel came over to watch Brady so I could take Jax to the doctor, so she didn't see Brady, but I'll watch for any signs from him as well. He's been crying a bit during his nap, so I'll really have to watch that.

I wish I would've brought Jax in to the doctor yesterday. Since he was sleeping through the night until last night, I was hoping it was a viral bug passing through, but as you read yesterday, I was getting uncomfortable with the length of time, so I'm glad I brought him in. I think I was also really scared of the answer from the doctor... I was fearing the worst. This was the first time he'd gotten sick since all his vomiting stopped and he got the G-tube, so this was scary. Now we've seen that he's still affected greatly with a weak GI system and a simple cold... we didn't know up until this point if he'd still react the same way. So now let's all just hope this vomiting goes away as he gets better.

I received a phone call from the feeding clinic verifying they received Jax's paperwork and have scheduled him for July 19 for a full evaluation from all the team members. This was great news, but it felt like a knife in my heart since I didn't know if Jax was relapsing at that point.

Thanks for all the support, times like this can be so scary to come so close and then suddenly everything feels like it's falling apart again... like a broken promise. So back to hopeful thoughts... and some sleep sometime soon ;)

Monday, April 26, 2010

No better

I almost didn't update this because it hurts me to have to write that Jax is still vomiting, but I know a lot of you are concerned and checking here to find out. He didn't even hold his breakfast down today, and that's the meal he's actually kept down out of the past 5 days. He's not getting much food at all and we're worried about dehydration and of course his weight. This is hard to deal with now that he has a straight G-Tube and the food is in his stomach. Jax will be squirming and crying hysterically and vomit one minute, and then happy and bouncing around the next. The sick moments seem like they're creeping up to be more than the happy moments though.

I don't know what to do. The doctor can't do anything and he'd only be seen if he gets dehydrated I think. I'm scared they'll have to put a GJ-tube back into him and bypass his stomach again if this keeps up much longer, which I don't want to think about right now. This is just carrying on way longer than I'm comfortable with. Jason is leaving to go out of town tomorrow until Friday, so I'm nervous about that too. Brady has been having crying meltdowns now when Jax gags, heaves or vomits. He comes running to me to be held, which sends Jaxon into a crying meltdown, and he's usually covered in vomit trying to pull Brady off me and climb on me as well. So you can imagine the insanity lately. I spend a lot more time on the couch letting Jax lay on me to keep him comfortable and happy, which seems to kind of make Brady a little jealous now. Brady will come up and try to lay next to me, but Jax will JUST not have it. (sigh...) I need just ONE more of me to give all the attention that's needed.

This has got to be a temporary bug... it just has to be.

Sunday, April 25, 2010

It continues

The puking continues. We've been giving Jax Zofran at night so he can be relieved of the nausea and get some sleep. Thank goodness we have this drug left over from his chronic vomiting days. We've been trying to give him a full morning feed, which he does well with, but then he only gets a half feed after lunch, and a half feed before bed. This way he's not laying down in his crib getting a full feed and then throwing it all up. This way he gets "some" food and less discomfort. I hope this is temporary...
On a good note, he really likes the taste of alfredo sauce and pudding. He won't take more than a few bites, either from not feeling well or not getting hungry between feeds with the schedule change. Throwing up obviously doesn't help our feeding progress and his oral aversion. 
Brady has an obsession with going outside. When he sees Jason getting ready to leave, he runs to get his sweatshirt and shoes and sits by the door. So you can imagine the meltdowns that happen when Jason can't take him with. Poor Big B!



This was the result of diarrhea contaminated pants and all the clean ones were up in the room Brady was napping in. So it was "Jax-no-pants" for a half hour.
Jax got stuck between the play tunnel and a basket of toys. 
He'd still be there today if we didn't get him out.
I turned around and found Jax pushing Brady around the house in the laundry basket. Tough Jax even has a bib on in case of puke - what a trooper!

Friday, April 23, 2010

And it continues...

Jax got really sick in his crib during nap time even though I turned the pump WAY down. I took the opportunity of Brady in his crib napping and put Jax in the tub. He continued to vomit until he could empty his tummy and then acted totally fine again and played in the water.
He's had a temperature all day (101.3 and 99.7) so I'm hoping this is just a virus triggering his reflux. Brady still has nasty viral smelling stools as well, so let's all just hope that is all this is and it will go away.
We'll put his backpack on before 5pm so he can digest some of his food before lying down for bed tonight since he seems most bothered with laying down - even though we still have his mattress elevated.
I cancelled the hearing test today for obvious reasons, and can't get the boys in for a month, so that will just have wait a bit longer.

Another Puke

Ugh,... I really didn't want to have type this. Last night about 1.5 hrs into Jax's nighttime feed, he puked again. He only had about 2/3 of his food this time. Tonight we will put his backpack on him after family dinner time and try to get his full night feed in before he goes to bed. If this is reflux, maybe laying down at night while being fed is bugging him? I don't know. I turned his pump rate back down and he was fine with it all day before that again, and it was an "episode" like he used to have. Where it comes out his nose and he shakes in pain. He vomited twice on me after and then acted as if nothing happened.
I'm of course riddled with fear about this right now. Could you all throw some good thoughts and prayers our way please?

Thursday, April 22, 2010

Random puke

Last night Jax vomited. He was in bed for about an hour and a half on his pump getting his "dinner" and I heard him gag on the monitor. I ran upstairs by him and as soon as I opened his door I saw formula pour out of his nose and he started shaking and screaming. Ugh, this poor little boy. He puked twice more in my arms while crying hysterically, and then acted as if nothing happened while playing peek-a-boo with Jason and I as we changed out his bedding and clothes. This shook me up so badly. 
He puked because of one of these reasons:

1. Random reflux.
2. He couldn't handle his food even though it was at the same rate earlier all day for his first two feeds.
3. He's sick. He's had diarrhea since Sunday night. 
4. His Pseudo Obstruction is coming back.

The only one that makes sense is #1. He's at a higher pump rate, but honestly it's only 2 ml's/hr higher than it was the two days prior and he was fine at that rate all day. He's had diarrhea, but no symptoms that would point to vomiting due to being sick, and Brady has had diarrhea since Monday without any further symptoms either. And I don't even want to talk about the possibility of his disease not being gone.
I programmed his pump 2ml's/hr less this morning and he's totally fine as if nothing happened. I just don't get it.

Jax was just adjusted by the chiropractor yesterday, and his back and neck were thrown off from the vomiting he did with the overfeeding he had prior. So now I may have to take him in sooner than expected from the heaving he did last night. I'm trying to keep him aligned to keep his trunk strong for walking.

The boys have their hearing test at Children's Hospital tomorrow afternoon to see if that's a contributing factor to their speech delay. I'll update with any results tomorrow evening.

** Oh and to leave this post off on a positive note - Jax did well with eating some strawberry yogurt at lunch today. I held onto his hand and let him kind of feed himself to see if he would trust it more, and it worked for a few big bites. And Brady pretty much told me that he only likes ham and cheese sandwiches on Wednesdays, not Thursdays.

Tuesday, April 20, 2010

Trip to St. Louis

We are home from our trip visiting with the family for Anesah's First Communion. The car ride was 6hrs and 45 minutes including a lunch break. The boys did not do very well on the drive down and were in full meltdown mode when we arrived. We learned from that first trip and the ride home was much better.
The boys loved being in new places and playing with their cousins and different toys. They had their fare share of meltdowns over the course of three days with a different schedule, but thankfully we were with family, so someone always helped and sensed my anxiety!
Brady of course cut his forehead on a corner in true Brady fashion and Jax had to be taken out on walks a few times while screaming over the fact I would be upstairs getting ready, again, in true Jaxon form as well. It was a great visit and they'll only get better as the boys get bigger.

The boys had speech therapy this morning, and did "okay" in my opinion, but the therapist said he can tell a difference in the boys from three weeks ago. There's more pointing and verbalizing (their own language), and pointing out body parts, so that's nice to hear. We did a feeding session with Jax and after I showed how Jax will take tastes from my finger easier than the spoon, the therapist believes Jax just doesn't trust volume off a spoon. So we did a few excersizes and realized that Jax did very well after his mouth was desensitized with a Z-Vibe (which is a tool therapists use), so we're going to get Jax an electric kid toothbrush. Hopefully with using that before eating, he'll more acceptable to spoon-feeding. I'll let you know how that goes, and in the meantime, I'm working on the small book-size packet of paperwork to get him into the feeding clinic at Children's Hospital.

Pictures from the weekend:
(I realized I don't have any with Nana Letts, sorry Nana!)


Brady loving the baseball game of course.
Brady and Uncle Clint.
Uncle Clint with all the boys!
Aunt Christa and Jaxon waiting in line for the train at Grant's Farm.
(I love this picture)

All our men.
(Jason with Brady, Clint with Jaxon, Papa Letts with Aidan)


Aidan was NOT happy to be in the tub with the boys because Jax peed in the water. 
I don't blame you Aidan!
Aidan, Jaxon, Brady and Anesah before her First Communion at church.
We left Brady and Jax in the nursery during mass. We peeked on them and found them to be completely happy. Here's Jax with the girls stacking blocks.
The nursery worker asked me if Jax was "strong willed". Funny, that's the second person to ask me that in one week.
With Anesah after mass.
Cousins - Anesah and Aidan
Brady filling his face as he did ALL weekend with all the fabulous food!
~The kids outside with Aunt Sue~
Brady playing with another little girl who was born premature the same week the boys were. It's amazing to see another child the same age at around the same size and development.
Do you think Brady was happy to be home and see his cat?
This went on for about 10 minutes.
I was cleaning the boy's chairs from the trip and found them to be obsessed with playing in and on the chairs. The odd things that entertain kids...

Thursday, April 15, 2010

Sunshine

We had a beautiful day of weather today and had to be outside. This is when I wished we had a fence! Our neighborhood either consists of wide open grassy areas all open from yard-to-yard or woods. I spend most of the time chasing after one of the kids and making sure they're safe rather than really playing with either one! The boys love playing in our immediate neighbor's yard because there's a big swing set with sandbox. We need to get some kid friendly things in our own yard this year.

We are taking a trip down to see Aunt Christa and the family for Anesah's first communion. They live near St. Louis, so this will be quite the interesting car ride with the boys. We'll be leaving tomorrow morning and gone through Monday or Tuesday, so don't be alarmed that there are no updates until early next week. I'm sure I'll have tons of great pictures from this little trip.

Enjoy these pictures while we're gone!


Jaxon is starting to climb up on toys the way Brady did before he started walking. 
I hope this is a sign~
Yes, that's Brady pretending to talk on two phones...
Jax loving the swing.
Fun in the sandbox. 
This is how Jax gets around all the yards if he's not crawling and scuffing up his legs. 
He walks the wagon all over the place!

Going inside for lunch and a nap.


Tuesday, April 13, 2010

Appointment updates

We had a long morning at the hospital for Jax's appointments. Let me start off  by saying what a good boy Brady was. I think he ate dozens of animal crackers and enough other food items to feed a small country. But that kept him quiet and happy!

The GI specialist is very happy with where Jax is. He isn't too concerned about his lack of weight gain (weigh in: 21lbs, 6oz) since he isn't "losing" anymore. He and the nutritionist agreed to increase his calories and we'll see where he is in July at the next follow up. The doctor seemed a little uneasy about the fact Jax isn't walking yet since he is so motor-driven and was ALL over that room and cruising around like a mad man. He said that children who don't eat, don't really talk, so he's hoping with future oral-feeding success, that will work itself out. He did make the comment that he thinks something has gotten Jax through his Pseudo Obstruction since it's known to be a lifetime disease. On Jax's discharge papers I saw the doctor write "reflux" as the diagnosis. Apparently Jax exhibits no signs of his his GI disease anymore. :) I never thought I'd see that...
The doctor asked if we met with the motility specialist and when we said NO, he said he did not want Jax to be tested further. He wants Jax to concentrate on walking, talking and eating.

The meeting with the feeding clinic coordinator went as expected. Jax was happy and sweet until he didn't want the spoon of water in his face any longer. He wanted the cup of water instead and had a meltdown. The coordinator had us both turn our heads away and ignore his tantrum. I lost it, and cried. I fought back the tears so hard, but listening to Jax scream because he didn't want a spoon put in his mouth made me emotional.

The coordinator agreed that Jax can physically handle food by mouth now, but he can't handle it mentally. He needs to be admitted into their program, which is about a 3-4 month wait after they recieve the paperwork. Oh my gosh, this paperwork has over 1,000 questions and charts and will take me awhile to complete along with all records from therapists and doctors. This program may not be an in-patient program, but rather an out-patient program for him or just even a place I bring Jax for consults. He needs to be seen by a pediatric psychologist along with the rest of their staff. She explained how Jax has had a feeding tube (of one kind or another) his entire life and not only does he have an oral aversion, but he is beginning behavioral issues along with it. He does not understand what food "is". He doesn't understand what it's for, how to chew it, how to swallow it or even what the reason for it is. He does not have words, so he can only show his displeasure through his actions. And I'm sure you can imagine what some of those actions are. He had the biggest tantrum I've ever seen of him while in the GI lobby. Jason and I looked at each other with our mouths open and had no idea what to do as Jax bucked himself out of my arms screaming. We took him outside the doors and POOF, he stopped crying. We had to bring him back in for his next appointment and sure enough, walking through the doors caused him scream and cry. He has such an association mentally that it just breaks your heart. 

We need to work on getting Jax's pump rate higher in the meantime since he still takes too long to take a feed. It takes him about 2 hrs to eat just over 8oz of formula, so we need to get him to take this faster and mock a more normal meal so he can be hungry in between these meals - so that's a big mission during these upcoming months.

The feeding coordinator gave me a hug and said how thrilled she is to see me crying over Jax's outbursts over food rather than his episodes of sickness. That made me smile and remember that this is a problem we only dreamed about having, so we'll take this next challenge with hope, like always.

Sunday, April 11, 2010

Time to start another week...

The boys were outside all weekend and just love it. Nana Letts visited on Friday and Papa Letts flew in from his bowling tournament on Saturday, so they got a lot of attention. We went to the zoo on Saturday and out to dinner after picking up Papa Letts from the airport. Jason left this afternoon for a business trip until tomorrow night (Monday night).

Jaxon has a few appointments on Tuesday at the hospital with the GI team, nutritionist and the feeding clinic. We'll see what they all think about a feeding program. Jax has regressed so much with oral feeding. I can't get more than a few bites from him. I try every flavor I can think of, and while he'll like something, he just really won't take any volume of it.

I'm in the middle of the big task of changing over their wardrobe (which I do spring/fall) and that is quite the job. I did 6 loads of laundry of hand-me-downs from Christa and other friends (thank you!!), while cleaning out their current clothes and labeling everything. I can't wait for this project to be done hopefully tomorrow. I realized that all the shorts I ordered online for the boys are too big since apparently 24 month shorts go down to their ANKLES in this particular brand... we have such short little dudes...

Nana and Brady strolling at the zoo.
Jax and Daddy getting a good view of the animals.
The boys starring off at nothing...
and again...
(HEY, the animals are the OTHER way!)
and again at dinner... wake up!

Tuesday, April 6, 2010

Overfed

We had a rough time with Jax's feeding pump for awhile, and have been changing out equipment with the medical supply company. We're pretty sure most of the problems are due to the formula getting caught in the line. We now rinse out the bag between each feeding during the day, and yet still have problems.

Last night however, the pump seemed to do the opposite of our problems. We had the pump set at Jax's normal rate for bedtime, and at his designated time (2 hrs) of being on the pump, Jason went upstairs to take him off the pump. Jaxon stood up all upset and starting convulsing and vomiting violently.
We took him out of his bed and he ended up sick for the next few hours. We immediately thought the pump was set wrong, but we triple checked it and sure enough it was set properly, but all his food was gone. We fill the bag all the way up (and save the remainder after each feed), and the entire bag was empty, so the pump malfunctioned for sure. Poor Jax. After soaking his bed, himself, the floor and even me with vomit, he laid on my chest in my bed for a little over an hour (covered with towels). I put him into his bed and could tell he finally felt better. We were up until midnight making sure he was okay.

So this morning I was too scared to put him back on the pump and hand-syringed his food into him every so often. The medical supply company sent out a new pump, and I've been told they'll be calling the company directly about the situation. I just want this kiddo to catch a break! He's seems much better today thankfully and I'll try his new pump once he's up from his nap. I let him have a pj day on this rainy day with lots of snuggles!


Random photo from lunchtime:
I realized half way through lunch, Brady apparently didn't like tomatoes today and wanted to make it clear to me he wasn't going to eat them. When he finished eating the rest of his bagel and tangerines, he put all the tomato pieces back on the plate with his fork and folded his hands. Totally hilarious and I gave him some gram crackers for being so polite about it.

Sunday, April 4, 2010

Happy Easter

Happy Easter everyone~

The boys have been enjoying the weather, even though it's gotten a bit cooler again. We were interested to see how Jax did with grass since he was pretty scared of the texture last summer (preemie sensory delay). He did great! He crawled all over the yard all weekend, making me realize he needs to wear JEANS when he's outside from now on, or at least until he's walking. Brady just loves being in the wide open space, and is willing to run up to any one's house!

On Friday, Jax had a great appointment with the chiropractor. She said we can wait three weeks in between sessions now to see how he does. His alignment is holding really well mostly due to no vomiting and he's getting stronger, so that's great! We took a long walk late Friday afternoon out to Kopp's Custard for some dinner. We found out that Jax liked the strawberry custard a little bit, as well as some spaghetti sauce on Saturday night, and ranch dressing on Sunday. He didn't eat any great "volume" of these things, but he leaned forward and opened his mouth slightly for a few tastes. He seems like things with a bit more flavor over bland baby food.

Jason played with the boys outside a bit on Saturday, and the boy's had fun with Nana Jayne and Bumpa and some of their great grandparents on Easter Sunday. There are plenty of pictures for you to enjoy!


The boys on Friday afternoon for our big walk.
(That's a fox in Brady's mouth...)
The walk home. Jax on daddy's shoulders.
Jay showing the boys how to golf in the backyard on Saturday.
(Jax showing why he should be in jeans...)
Jay showing Jax how to use their t-ball set.
(Notice he's making sure Jax uses his LEFT hand)
Since Brady can stand independently, he was really into it.
He understood the game immediately. Here he is setting up his own ball.
And hitting it off! Daddy is so proud!
Brady showing off his Easter basket from Nana Jayne.
Jax and Great Grandma Laura sitting outside.
Brady mowing the grass.

Tired Easter bunnies reading bedtime books.