Thursday, June 30, 2011

School meeting update

I met with the school district team today to review Jax and Brady's evaluation results and what the plan was for the upcoming school year now that the boys will be 3 years old.

We started with Brady first. He scored a "severe delay" in speech and language, which is no surprise. I think he still scores in the 18-24 month range for that. He did however score on the low end of average for cognition, so there's no need to address that as a delay or need, so that's great news. Brady's plan is for 30 minutes of speech therapy twice a week at the school.

Jaxon's plan is a bit more encompassing. He actually still shows a delay in functional skills, testing at an 18-24 month level. His muscle tone is low throughout his trunk and extremities with immature balance reactions. He has asymmetries present with his right side being weaker than his left from his torticollis. He still shows a delay in fine motor skills and self care. As expected, he scored severely delayed in speech, so that was not a surprise. The surprising factor, was that he scored a mild delay in cognitive skills. He was not diagnosed with a cognitive disorder, and it's hard to test the cognitive skills on a child who doesn't have speech skills yet.
Jax has qualified for the Early Childhood Development program, which is basically a pre-school for special needs. He'll go for 2.5 hrs twice a week with a teacher skilled in tube feeding.

I admit... I was heartbroken during the car ride home and when I got home. Don't get me wrong, I'm thrilled with all the help the boys have gotten and the plan to help them come this fall. It's just after sitting with a group of people for 2 hours listening to everything that is "wrong" with the boy's development, and then to accept that one of them needs special ed services, it takes you back for a moment. I go every day on auto pilot trying to give them everything they need, and no matter what I do, I can't "fix" it all.
I think the boys have come so far and will be able to excel some day, but it's the constant struggle that gets me once in awhile. I'm happy they'll get the further help that they need, but of course as their mom, I wish it wasn't necessary in the first place. I feel guilt, and I can't think of one thing that I should feel guilty about, but it's still there. I guess that's the mom-part that's indescribable unless you are a mom.
I just need this one day to feel this and then it's time to move on and help the kids be nothing more than just happy kids who never feel less than the perfect boys they are.

Wednesday, June 29, 2011

Ugh... POO!

Business as usual here at Casa de Lettenberger. The boys have been mischievous in the yard with me each day. I swear we go through a can of sunblock every 2 weeks now.
Yesterday was interesting... NOT! (Do you think I can bring that saying back?)
I went to get Jaxon out of his crib after his nap and found him covered in his own poop. Yup, he got into his sleep sack (that I zip up behind him) and he took off his diaper (I just leave him in his diaper under the blanket during these warm months). He proceeded to poo and apparently play with it. Yes, everything was stripped down and he got an early bath that afternoon! I'm so happy I had an old cheap set of sheets on the bed from stripping it all down from his tube removal last week. I looked at the sheets, and had NO problem just throwing them out. They were COVERED in poo.
Oh these kids... Note to self, keep a pair of shorts on Jax under his sleep sack.
*I use a sleep sack on Jax to keep his tube secure and away from his hands so he can't disconnect himself or pull the tube out easily.

I have the boy's IEP meeting with the school district tomorrow. Jason comes home from Missouri tonight and will stay home with the boys while I go to the meeting. I'm a bit nervous, but have hope the boys will have shown improvement from previous evaluations and they'll just get the help they need. Speech is an obvious area of needed help. I'll update tomorrow evening with how this meeting went and what the plan is for the boys when the school year starts.

Look at this beautiful lunch scene of the boys both eating :)

This is a typical scene in our house. One child is running after the other screaming for a turn with a toy. And yes, that's Brady wearing a dinosaur hat and hoarding a toy. Don't be fooled, usually it's Jax waving a toy in Brady's face and running circles around him. Even though Brady is bigger and faster, Jax somehow can keep toys away from him!

Monday, June 27, 2011

Get the kid off the field!

Wow, we had a beautiful weekend, so you can expect we were outside the entire time. We took the boys to Jay's softball tournament on Saturday, and since there was no playground, you can imagine the boys had little to keep them occupied. They loved playing on the field in between games, but during the game, they could only drag around bats and play with balls for so long before getting into a bit of mischief. Jaxon actually went ONTO the field during the end of the game which mortified me!

After the first game, we brought the boys home for lunch and naps and I sent Jason back to his next game alone because I'd rather play with the boys in the yard or at a park. Jason came home in between the next set of games and we took the boys to dinner. Yesterday (Sunday) we played outside in the great weather and had a visit from Shannon and her baby twins, and then Jason and I took the boys swimming at Auntie Rachel's for the rest of the day, but not without stopping for some frozen custard on the way home, yum!

Jax's health remains great. He still drinks his sippy of flavored milk with some better days than others. Brady is still as dramatic and hilarious as ever with breaking down this morning because the top of his banana broke off and he couldn't get to go back together. He MUST eat his banana from the skin, or not at all. How diva of him :)

The boys running the base line on the softball field.

I scared Brady. He thought he was in trouble for sneaking out the sidewalk chalk.

Jax giving baby Drew a head bump.

Jason, 2 kids and a pug named Cash swimming in the pool.

Rachel and the boys having fun.

Dennis said he swaddled Jax.

Brady walking around like a superhero with big muscles! We got the boys some swimming suits that have built in floatation devices in the shirts and the boys looked pretty funny in them.

Look at Big B's muscles...

And his cute chicken legs... I have no idea why he took his shorts off and put his boots on, but it truly depicts this hilarious kid!
                
 

Friday, June 24, 2011

Toddler boy antics

Everyone is healthy and it's great! Now, if we could get the rain to stop, life would be even greater. With it raining and storming every day, the boys are climbing the walls of the house. On Wednesday, I was sitting at my desk paying some bills and walked into the living room to find white powdery clumps ALL OVER the living room. I panicked not knowing what it was! I searched for some kind of packaging and when I couldn't find one, I smelled the powder and it was odorless. I was so confused. I looked in the garbage can and found an empty box of baking powder. The boys took an open box out of the refrigerator and emptied it all over the floor, the couch, the brown shag area rug, inside their wipe container... everywhere. And they did it totally silent like the little cat burglars that they are!

And yes, baking powder is the gift that keeps on giving because I've cleaned the same areas three times now, and I continue to find powder. Buuut yes, I'm happy to be driven insane by their toddler boy antics as long as everyone is healthy!

Jax is still drinking his milk. He hasn't taken more than 2oz in one sitting again, but he's still consuming it and today I gave him a breakfast cup of milk for the first time ever. He only took a few sips, but it was neat to offer him a "breakfast" instead of just his backpack. His pump rate is going up nice and slow, so he's "eating" a bit faster now.

I pulled down some paper-paged books yesterday (yes, I'm grasping at straws to keep them entertained during this rainy week), and Jax is in LOVE with a Dr Seuss book about Elmo finding Sesame Street. I must have read it 20 times in the last 48 hrs. The boys are destructive, so they're only allowed access to board books and they can only touch paper-paged books if I'm next to them. I hate to see books destroyed and unappreciated!  So we've been looking through a lot of paper-paged books this week!

The boys had a good speech therapy session yesterday. Jax is having a nice tiny explosion of at least attempting many words. He uses ALL DONE consistently now and will yell, "ALL DONE DADA" when he wakes up in the morning and when he's ready to get out of his chair when eating. That's the closest to a sentence we get out of either of them, so it's neat to start seeing some communication. Brady is still struggling, but has shown definite improvement with attempting some words as well. Not that Jax is very clear when he says words, but Brady seems to have an even more difficult time with the actual pronunciation of most words. Although he surprised us and said CAKE rather well, that's my boy!

Here's Big B this morning. Yes, camouflaged rain boots are necessary at all times.

Tuesday, June 21, 2011

Strawberry milk!

Jax seems to really like flavored milk. He drank 2.5 oz in one sitting at dinner yesterday! He drank about 1 - 1.5 oz twice today, so not as much, but it's so nice to see him drinking an actual volume of something other than water!
Last night I used a silver nitrate stick on the tissue that is sticking out of his stoma site. Well that must have disturbed the area because when I went to take Jax off his night time feed last night around 10:30pm, his entire tube was out. I called down to Jason to come help me because Jax was covered in blood, bile and formula. We stripped him and his bed down and got to work on getting a new tube inserted into Jax. We didn't know how long his tube was out and know that the longer it's out, the stomach starts to heal itself and close the inner hole. Poor Jax was hysterical because we woke him up and took his clothes off. I opened up a new tube and Jason had to hold Jax down while I pushed a new tube through. I was sweating so bad because his hole did close up a tiny bit, so I had to really work it in. In moments like that, all I want to do is make a gross face and look away, but for Jax's sake, we keep a calm demeanor and forge through. After the tube was inserted, we washed him down, changed his bed and he went back to sleep. I felt sick after that, but was relieved we were able to re-insert the tube ourselves. Jax is such a tough little boy and is totally fine today and I'm sure has forgotten about it! 
Brady loves to say "GUCK!" each time he gets his poopy diaper changed or if I'm changing Jax. It's his way of saying, "YUCK". I love how he always sounds like a honking goose, he's so cute. Oh, random thought - I found a non-steroidal cream that works GREAT on his eczema which was flaring up pretty badly with the warm weather. We started using Alveno Baby eczema lotion after every bath, and it seems to be working great, so there's a quick product rave for ya! 
*Blogger has changed their formatting and it's not agreeing with me, so I realize it's odd, but I have no way to fix this! Gah!



Jax's Pj's and sleep sack all messed up from last night.





The boys playing a game of spinning in circles.
And falling down...

Sunday, June 19, 2011

Happy Father's Day!

Happy Father's Day! We had a morning planned for the zoo, but by the time we were about to leave this morning, there was a thunderstorm! Change of plans to say the least. We ran a few errands and then had lunch at Jason's pick. We went to Buffalo Wild Wings and the boys were pretty good, so that was nice! We were able to get the boys outside after their naps and it ended up being pretty nice, other than some humidity and mosquitoes.

We had a fun Saturday with a birthday party in the morning (Miss Olivia turned 4) and our friends who have 3 year old twins came over for a cook out that evening. The boys had so much fun running around all night with Cecilia and Marshall.

Jax has shown to really like strawberry and chocolate milk. I found some non-fructose powder to use, and Jax drank over an ounce rather quickly on Saturday and Sunday. I plan to start him up on his Cyproheptadine medication tomorrow, so it will be neat to see how much he'll consume with that hunger stimulant now. I need to get some whole milk and heavy whipping cream to start making his drinks now that he seems to be wanting to drink an actual volume. Yay! This is great!

The boys running away with the balls at the birthday party.

We stripped the boys of their shirts to have some cupcakes. I caught Jax in a RARE moment. He has his tongue out! He's taking a small lick of the frosting all on his own!

Then Jason encouraged him by taking a lick as well. The boys thought that was pretty funny.

Then Jax just wanted to feed Daddy and was all done with that activity.
And Brady is asking for more!

This was the only way to keep Brady from trying to open the birthday girl's gifts. So while the crowd watched gift opening, Jay was off to the side taking batting practice with Big B.

Once the boys got their buckets and bubbles to take home, they were out of there!

At home playing with Cecilia and Marshall

Kids eating dinner

The boys surveying the rain this morning. Yes, they're in rain boots and shorts.

Jax with his hands in his pocket looking to Jason for an answer of what to do for the day.

Wednesday, June 15, 2011

Remaining evaulations complete

The boys had the last of the necessary evaluations for their 3 yr old developmental needs education program. This is where the county recognizes which 3+ yr olds need extra help in order to best prepare them for kindergarten so they're at the same level as their peers. Brady was only being tested for speech and Jax was tested globally. Jax loved showing what he could do for the ladies today and was a total ham. Brady wasn't feeling it and had a little tantrum and hid in my lap. I explained to them that he is usually a VERY affectionate loving boy, and he ended up showing it a bit later in the meeting. He really wanted to just have whatever Jax had for his test and wanted to keep running away with things. The ladies didn't seem phased or judge him in any way which was reassuring.

Half way through the evaluations, they realized that Jax has really caught up to Brady physically (not completely, but he's made huge strides) and that both the boys were actually almost at the exact same level cognitively as well as speech. So with my permission, they tested Brady cognitively as well as for speech.
I'm not sure what that all means, but I think it would address Brady beyond just speech and possibly needing a more rounded "special ed preschool" setting. They were really looking for attention span, so I don't know if they're looking for pre-cursors for learning disabilities or what, but I'm just glad we're doing this early for the best possible outcome. These boys are SO bright and have amazing potential, but they just seem to need a little extra push to get them on track with kids their age level.

This will all be made clear to me at the meeting set up for June 30. There I will meet with the Early Childhood coordinator, the psychologist, the speech therapist, special education diagnostician, occupational therapist, physical therapist and the school nurse. They will give the results of all the evaluations they've done these past two weeks and present a plan for each child.
I *think* the therapists that were here today may think that the boys may get similar plans since they seem to test so similar. I have NO idea what their recommendation will be, but I'm glad to know a nurse will be there so whatever game plan we have, she's involved.

Monday, June 13, 2011

Feeding Team Update

Jax had an amazing session with the feeding psychologist today. We went in early to do a breakfast session and then again in the afternoon for a lunch session. I took Jax to a nearby park to play in between sessions. He did great with different tastes of liquid and big bites of apple sauce and some yogurt. Jax weighed in at 22lbs 7oz, so he took a small hit from his cold last week. They were happy to see his weight gain from the pneumonia, but obviously with Jax's height growth, he needs to gain even more weight for his height-to-weight ratio to be good. He is still too small and getting sick too often to get into any kind of actual daily "clinic", so we do the wait-and-see game again. Jax won't see the entire team again until Halloween day, which feels like FOREVER away. So our job is to fatten this boy up and keep him healthy.
I'll be starting up his Cyproheptadine again to see if that helps his tummy a bit and increases his hunger again. Otherwise Jax still has good days and bad. His GI system seems to be purging the last of the virus now, so I'm hoping for a nice long run.


The boy's new obsession. They run into the guest room and get under the covers of the bed to pretend to sleep. Just what I need... another bed to get messed up every day!

Brady and I cheering on Jason at his softball game.

The boys cheering on Daddy together during batting practice.
*They never sat nicely like this once the game started. Nope, they ran around causing me wrinkles through every inning.

Friday, June 10, 2011

Feeding stand off

Jaxon was up heaving at 4:30am on Thursday morning, and then vomited his breakfast twice later in the morning. I was worried he was really getting sick. Now it's Friday afternoon, and he's been fine since, other than being extremely clingy to me. I can't figure him out!

He's been doing well with holding food and putting it up to his face to pretend to eat it. I've been getting him to kiss and lick pieces of fruit, although a small piece of watermelon got into his mouth and he vomited trying to get it out on Wednesday night.

Today during feeding therapy with Mr. Nick, Jax was NOT having it. He screamed and cried and gagged for what felt like forever. He wouldn't even take water. We have to get rid of the highchairs this weekend since Jax fights badly when you try to put him in it now, even though he'd fit in it for probably another year. We're going to put the boy's booster chairs at the kitchen table, and while that will cause a bigger mess for us, it may make for less of a fight with Jax.

Jax has Feeding Clinic at the hospital on Monday and we'll be there most of the day since we're doing a breakfast and lunch trial. We've never done this before, so it should be interesting and exhausting. I wonder what they'll think of his weight...

Wednesday, June 8, 2011

Shirts are hard to get off

The county school board therapists came to evaluate Jaxon yesterday for the areas of physical and occupational therapy. The boys loved both of the therapists and had fun going through their activities. I don't know how Jax did in terms of the help they think he needs, but I'll find out before their birthday. Both of the boys will be evaluated for speech next week and then the county comes up with a final plan for the boys for when they turn 3 and the school year starts in fall. It's kind of like a developmental preschool program that needs to identify and support children who need extra help to try and get them best prepared for kindergarten.

Otherwise this week is pretty normal with a visit to the chiropractor for Jax and then speech and feeding therapy later in the week. Jason is out of town in Missouri until late Thursday night, so cross your fingers he's not stuck there in a tornado or flood like he usually is!

Gee, can you tell this is Jason's son?

Actually, Brady is learning to take off his shirt and he keeps getting stuck in it!

Sunday, June 5, 2011

Sunny days

We had a nice weekend hanging around the house. Jax's lungs are much better and not requiring Albuterol anymore, so we're just giving him double the preventative Budesonide each night now. He still has diarrhea and vomiting each morning, but otherwise he's doing well. I know that sounds strange to say, but with Jax, he's acting fine other than those "usual symptoms" he'll display for awhile when recovering from an illness.
My mom came down on Saturday and we had a nice lunch. We tried to go to a church picnic, but it wasn't open until 1pm, so we headed out for some pizza. My aunt drove up from Kansas to stay with my mom for a few days, so she met us all at my house on her way up and we had a cookout. It was a nice visit.
On Sunday we played outside with the boys most of the day. We set up the sprinkler and their water table, and we just relaxed around the yard. We picked up some dinner and headed to a park for a change of scenery. The boys had a blast getting out their last few bits of energy before coming home for a ride in the wagon for a walk and then shipped upstairs for baths and bedtime. Jax has been CRABBY the last few days right around dinner time. He doesn't usually "sleep" during his naps, and now that it's summer and he's running around so much, he actually NEEDS a little nap during the day. Hopefully he'll figure that out because he's just so upset by about 6:30pm now.
Otherwise, we're all good in the hood. This week Jax gets evaluated by the county physical and occupational therapists to see if qualifies for any of their services when the school year starts up in fall. Both boys will be evaluated the week after for speech. I should know by their birthday next month what the plan of action is for one or both of the boys for therapy.


Nana Jayne and Aunt Janet with the boys on Saturday night.

The boys taking a water break from playing in the yard.

The boys enjoying their water table out in the shaded part of the yard.

Then Jason came along and terrorized them with a squirt toy!

Playing at the park after dinner tonight.

Enjoying a merry-go-round with a new friend.

Friday, June 3, 2011

2nd update on the cold

Jax was better today. He never developed a fever and is breathing was better this morning. It seems that the around-the-clock Albuterol treatments really helped. The doctor said his chest sounded better and our plan is to double the amount of his nightly preventative breathing treatment from now on. She said that it clearly isn't enough if a simple cold puts his lungs into crisis like this.
So I'm hoping that by doubling the "preventative" medication each night, we're able to avoid Jaxon's system going into such distress - only time will tell!
I hope Jax is able to sleep through the night without the need of his nebulizer tonight, we could all use a full night of sleep!

Thursday, June 2, 2011

Update on the cold

Jax was up at 2am last night in total misery. I knew when he woke up and was coughing this morning that he was probably going to have lung issues. I checked his O2 level with the home pulse ox machine and it was 93. I gave him an Albuterol treatment and re-checked his level and it went up to 95 so I made a doctor appointment. He also started diarrhea today and lost all of his breakfast. All these symptoms are so similar to the first few days of his pneumonia except he doesn't have a fever, so that's good news!

I took the boys to the doctor and Jax's O2 was 95 with wheezing, and then 97 after a treatment from the doctor. She thinks he definitely got Brady's cold, but his lungs (and GI system) are as usual taking a hit from it. We have to give Jax double the Budesonide and an Albuterol treatment every 4 hours and have him re-checked in 24 hrs to make sure he's not declining. If he is, the doctor will give us a liquid steroid to put through his tube and she'll check him Saturday morning as well. They certainly don't screw around with Jax and his lungs after seeing how quickly he can decline, so I like having a plan of action. Hopefully he'll do great over the next day and be cleared by the doctor tomorrow and we won't have to worry anymore.
Until then... it will be another long night! Cross your fingers for Jax man please!

Wednesday, June 1, 2011

Mmmmm dada

Jax definitely got Brady's cold. He's doing okay, but has the hardest time at night in bed. He was up moaning and gagging last night, so I sloooowly pushed Zofran and Tylenol through his tube and stood over him like a statue hoping he'd keep his food down. I could tell when the meds started to help him because he slept soundly after that. He kept his breakfast down, but got sick in bed finishing his lunch. I made sure to give him Zofran and Tylenol right before bed tonight and he's been sleeping soundly while on the pump all night now.
Basically he just has a really runny nose and is a bit clingy, so hopefully that's all this is until he gets over it. Brady has already pretty much kicked his cold, but he recovers rather quickly from quick virus' like this.

A quick funny note. Jason was practicing sounds and words with the boys during their bath last night while I put their laundry away. I hear Jason practicing the word mama, and he said, "mmmmmmma mmmmmmma". I then hear Brady say, "mmmmmmmm dada". We laughed pretty hard from that. They just CAN'T say that word-sound for some odd reason. They will moo like a cow, but can't get the "a" at the end of "m". If you tell them to bring mama something, they always bring it to me, so they know *I* am mama, and Jason is "daddy or dada", but they can only say dada, and refer to both of us as such.


Jax hanging out on a swing.
The boys playing a very interesting t-ball game with the neighbors and their nanny.