{Major} Jaxen Update

Wow, seems like a long time since the last time I updated.  Just goes to show you how busy my life has become!  No one very said that raising kids was easy, and now I know why!  It's the most difficult yet rewarding job there is.  But I think I'm doing a pretty good job at it.  Although some days, my children would tell you differently!

Jaxen has gone through all his testing and we've had our meeting with the school district.  I finally have all the paperwork and results in hand so I can share with you all.  Sorry ahead of time if this is long, but they tested so many areas!

First off, I got the official diagnosis for Jaxen's sensory testing.  Jaxen does demonstrate sensory concerns. The tests showed that Jax is not overly sensitive to input from his environment.  He scored in the probable difference level in the low registration and sensation seeking areas.  Which indicate that he seeks sensations MORE than other children his age.  Children who are sensation seekers are active and continuously engage in their environment.  The often make noise all the time, fidget, rub or explore objects with their skin, chew on things, and wrap their body around furniture and people as away to increase input during tasks.  They may appear excitable or seem to lack consideration for safety while playing.  The low registration score indicates that Jaxen may be missing cues in his environment, especially in the auditory area.  This could be due to his constant need for movement and sensation seeking behaviors which do not allow him to notice more subtle things.  He scored in the probable difference levels in four out of nine areas overall.  These scores indicate that he is a definite sensory seeker. 

This means that once he starts school, Jaxen would be provided a sensory 'diet',  This 'diet' would provide him with scheduled, regular times when Jaxen would be guided to play in ways that would meet his sensory needs.  For example, his teacher could not take away recess for bad behavior.  And there could be times when Jaxen becomes a distraction in the classroom that a para would come and take Jaxen on a walk or engage him in an activity that would meet his sensory needs and enable him to return to class ready to focus on classwork.

Even though we did not report any hearing or vision concern, Jaxen was tested in both areas.  He passed a functional vision screening in both eyes.  He also passed both the Puretone Hearing Screening and Typanogram screening for hearing loss. 

For Speech and Language, our main area of concern, Jaxen was tested with three different tests:

The first test, Goldman-Fristoe Test of Articulation-2, assesses the child's ability to produce consonant sounds.  With an average score being 100, Jaxen scored a 69 with 63 errors.  This scores him at BELOW expectations for his age.  He could not produce all age appropriate sounds in at least one word context.  The errors that he made, should be correctly produced by the majority of 3-year-old children.  Jaxen's errors were substitutions and omissions of sounds.

The second test, Receptive-Expressive Emergent Language Scale-3, is a 132-item checklist that uses observational information reported by the parents to identify any major receptive or expressive language problems in infants and toddlers up to three years of age.  {This is the test that Jaxen took at 20-months old that scored him with an age equivalent of 10-months}  Again, with an average score of 100, Jaxen scored a Receptive Language Score of 83 with a Below Average Rating and an Expressive Language Score of 76 with a Poor Rating.  The total Language Ability Score for this test was a 75, putting him at an age equivalent of 21-months.  {He was 34-month-old at the time of testing.}

Receptively, Jaxen understands just about everything {it's not uncommon for this score to be below average} but expressively, Jaxen has some work to do.  He is unable to use a least 50 words, say at least two new words each week, use real words when something has happened to him, use words ending in with -ing, have definite beginning and ending sounds, use words when needing help with personal needs, tell you where something might be (in, by, on), and refer to more than one by adding (S) on the end of words.

The last speech and language test, was a Speech Sample.  This test identifies his sound errors.  A 3 year old should be about 75% intelligible to an unfamiliar listener.  Jaxen was judged to be about 50% intelligible.  This test also inspected Jaxen's oral structures and revealed no abnormalities that hinder speech production.  His mouth, tongue, lips were intact and symmetrical.  Jaxen demonstrated appropriate strength, range of motion, and accuracy of his oral musculature.  Which verifies his burn injuries are not the cause of his speech delay.  His scar tissue is not limiting his ability to produce sounds!

With a score of 100 being average, Jaxen scored a 108 for Cognitive and Intellectual Skills.  Which means even with the speech delay, Jaxen's IQ is ABOVE expectation for a 3 year old.  {We NEVER doubted his intelligence!  He is TOO smart for his own good!}

Academically, Jaxen was given a test called the DAYC (Developmental Assessment of Young Children), which is five sub-tests that measure cognitive, communication, social-emotional development, physical development, and adaptive behavior.  With an average score of 100, Jaxen scored an 84 with a below average rating. 

And finally, Jaxen scored a 120 in the area of social-emotional skills.

SO, after reviewing ALL this information, Jaxen meets criteria for Sound Systems Disorder - Articulation and/or Phonology.  The evaluation report documents the extent to which Jaxen's sound production is outside the limits of State designated normative data and addresses the adverse education impact of the child's sound system disorder.  The student is unintelligible to the unfamiliar listener and the team has determined that as a result of the disability the student requires special education.

So the good news is Jaxen will start speech classes at Cass-Midway in December.  He did not qualify for preschool services.  He is super smart and the ONLY thing is lacks is the speech and language.  Once his speech is caught up, all his other scores will improve also.  At this point there is no need to doubt that Jaxen won't be a caught up and ready to enter kindergarten on time.  He's got plenty of time and a lot of people in his corner.  We meet with Jaxen's 'Team' next week to put on paper a plan of action.  His team not only includes Jerry and I, but also the Elementary School Principal, Speech Teacher, Director of Special Services, and the Parents As Teachers Director. 

Checking In

Whew!  Things are getting a little crazy around here.  Every kid has something different going on and Jerry is getting to work a ton of overtime at work!  Which has been a total blessing, it couldn't have come at a better time.  But with him being gone an extra 2 days a week, it's been a struggle to rearrange my schedule and take all the kids to appointments that I didn't plan on taking them to.  But we are surviving, let's start with the youngest.

TYLER

Tyler's lead screening hasn't come back from the lab yet, I blame the government shutdown.  I think it's driving the nurses crazy, they keep calling me to tell me that it's still not back.  The rest of Jaxen's blood work came back and it wasn't perfect.  So little man must get his blood drawn again next week.  Tyler's white blood cells were elevated, which could mean something as simple as he was fighting some type of infection.  However, the scary part is that it could also mean something as horrible as leukemia.  So they want to recheck to verify the white blood cell count went back down to normal levels.  I'm not freaking out yet, because I honestly don't think anything is wrong with him.  He is a very healthy child.  But it's always nice to get the bad things ruled out completely.  So keep him in your thoughts because next Thursday or Friday is going to be a rough day for him.

Ty has finally added a few more teeth to the bottom jaw!  LOL, besides the two front teeth, Tyler just got his first set of molars.  It's quite funny how he has the front teeth, then molars but missing the ones in between on both the top and bottom.  I imagine teething has been the reason that he's been a total bear lately!

JAXEN

Since the last time we wrote, Jaxen has had his R.E.D meeting.  Basically, we had a meeting that went over everything we knew of Jaxen and determined if there was any addition information or testing needed.  He has about 3 - 4 more tests that need to be done to determine if he qualifies for services when he turns three.  It's all been a little overwhelming lately, he is doing so well and has come a long ways. . . I just hope he can continue to get additional services before he has to start school.  

Jaxen's tests are on November 1st at a Preschool in Belton.  Then two weeks later, November 15th, we find out if he qualifies for services beyond three years old.  Fingers crossed, I would love to see him continue on with at least Speech Therapy.

JACOB

This kid is going through some type of middle child phase. . . he has to be!  He's a mess. Crying about everything, getting angry about silly things, causing trouble just to cause it, and destroying things.  At first, I thought he was acting out because Jerry was gone more than he use to be {and I still do to a point} but now I think it's a boy/age thing.  The other little boy we watch after school is doing the same thing and driving his mom nuts, too!  I've really tried to make time for just Mom and Jacob activities and when Jerry's home he tried to include Jake in the "mainly" stuff.  Like tinkering in the garage.  I think he's just trying to find his place in the family.  He's not a baby anymore, he's a big kid. . . but he's not the oldest.

Jacob is doing really well in school, we have been having our issues on the bus.  And I'm afraid it won't be long until he gets an actual bad note sent home.  He doesn't see the bus as an extension of school, he see it as playtime with his buddies and that's getting him in trouble.  Jake is definitely a follower.

CHLOE

Little mama is doing good.  She's got her own thing going on most of the time.  With her is mostly Girl Scouts or the orthodontist.  She's doing great in school, really proud of her and the effort that she's putting towards her school work.  Third grade is suppose to be the harder transition.  And according to her midterm report card she's getting all A's and one B.  

Parents As Teachers

Because of budget cuts last year, we were unable to get the boys (Jaxen & Tyler) into parents as teachers (PAT)- even with Jaxen's speech delay.  The school district got cut down to providing services for only 10 families.  You can imagine how super excited I was during back to school night when the PAT coordinator found us and told us that they were able to offer services to more families and we were on her list.

Yesterday, was the first time Mrs.R came out to the house.  It was nice to finally have a program that Tyler could participate in to.  He was so excited that he got to play with the toys and be included.  The PAT coordinator, Mrs. R, is part of the team helping with Jaxen's transition into the school district. So we took this opportunity to try and give Jaxen a few tests that he needs done as party off the transition process.  Jaxen just wasn't having it.  Mrs. R was new and Jax just wouldn't cooperate.  Both his hearing and vision screening were scored as inconclusive.

Tyler's screening showed was I'm beginning to suspect and have plans in place to deal with -- he too is delayed in the speech and language area.  I am not jumping to get him enrolled in services as of now (he is only 15 months old) but I do have everything documented and ready to go when we feel we need to.  The screening showed that Tyler has no concern with his gross motor skills - climbing, throwing, walking.  He is on the boarder with fine motor skills - coloring, recognizing and pointing to objects in a book.  He is definitely behind "average" in speech and language.  So now it's all about timing and when we want to get Tyler into services -- and again, I'd really like to wait until I know he just not a late talker. 

Jaxen's Transition Meeting

This morning was our transition meeting with the school district about Jaxen transferring into the their early childhood education program.  It was an easy meeting.  The meeting consisted of Jerry, myself, Jaxen, our Missouri first steps coordinator, the head of Midway's Special Education Department, Midway's parents as teachers cordinator and head of Belton School Districts Special Education Department.  We all sat around the table and discussed our concerns for Jaxen and the difficulty he is having with speech, language and concentration.

We were there for quite a while because Jaxen has quite the file started!  The professionals were very nice and answered all our questions and concerns.  Our next step is our RED Meeting on the 27th, which means we go over all the information that is documented and decide what tests Jaxen should receive.  But between now and the 27th, Jaxen is having a sensory screening (to determine if he can feel pain - where at and to what extent).  {Jerry and I are not sure if he feels pain like the rest of us, most of the time he gets hurt he only reacts for our benefit.  So this will be an interesting test!} And we have a hearing and vision screening that Jaxen will have to complete next week before our RED Meeting.

After our RED Meeting, and his testing, we will get back together to discuss what services Jaxen will be offered.  Our choices are:

1) Continue as is with Speech and Language Therapy but through our school district.  Probably twice a week.

2) If Jaxen is developmentally and behaviorally behind we will have the option to send him to an early childhood education preschool in Belton. The school will provide a bus or van to transport Jaxen from our home to school and back, Monday through Friday. (Not sure how I feel about this... my baby on a bus!)

3) Or our last option is to discontinue services until Jaxen enters Kindergarten.

The next month or so will determine what we can do for Jaxen once he turns three.  Because at three, Missouri First Steps ends their services with him.  The process of transitioning will be extradited because Jax turns three in just 3 short months and if he qualifies for services he can potentially start them on his 3rd birthday.  Normally, this process of transitioning it's started 6 months out, but because that was June and no one was at school then, we are getting a late start.

Please wish it's luck, this is uncharted waters for us! Once again, Jaxen has to do things differently! Lol

I hope I haven't last or confused anyone. If you have questions please ask! Most people are quite about the delays their children have but I feel the need to share it all with you.  You are apart of Jaxen's life and can see the difficulties he faces.  And I think it's important for other parents to see that, delays happen in all types of children. You can't ignore it and I won't.  There is no evidence that Jaxen's burn accident caused this delay, while I am sure it didn't help anything- Jaxen might have been delayed regardless.  With the information and resources we have, Jerry and I are doing everything we can to give Jaxen the best start on life and in education.

It's been a while...

Whew, it's been a long time since my last update.  I am hopeing to have more time to update this blog now that I have an awesome phone that is blogger friendly.  Hopefully, now I will be able to update from anywhere... lucky you! :-)

Lots have been going on around here since the last post, and there it's no way that I can go back and catch you all up, so we will just pick up from here. 

A couple weeks ago, our family has started a new reading tradition.  We make sure to take time after dinner /before bed to sit and read a story out loud.  Jacob it's starting to read and with our help he is responsible for reading a paragraph, Chloe is responsible for a page and Jerry and I take turns as needed.  And I'm proud to say, as of tonight we have finished our first book, Harry Potter and the Sorcerers Stone.  It was so much fun reliving the wizarding world with the kids.  Jacob was hilarious when he finally figured out the Harry was a wizard!  It was fun listening to Chloe *guess* who was the bad guy.  She had everyone pegged as the bad guy, everyone except Professor Querral. Lol.

We are in the beginning phase of getting Jaxen transferred to the school district for his speech therapy.  Tomorrow is our transition meeting, where all our questions will be answered and new tests will be ordered to determine how far Jaxen has come and how much farther he needs to go.  I am exited for the new phase, but I do not want to say goodbye to our speech lady who has worked so hard to help us get Jaxen to where he is today!  Wish is luck tomorrow!

Jacob and Chloe are both doing well in school.  Jacob comes home with more redirects and gets in trouble a lot more than Chloe ever has, but truthfully nothing has been completely out of line.  And most of the boys get in just as much, if not more trouble. 

Tyler has finally found his voice.  It's a lot of baby talk and screaming to be heard but it's music to our ears.  He has yet to speak real words but I think it's coming.  I believe he is still behind but I know what we are doing now!

Words

Jaxen's vocabulary lists:

1. Understandable words

• Go! (aka Doh!)
• Hello
• Bye
• Milk (aka Mock)
• Dog
• Moon
• Daddy
• Mom
• Uh-Oh
• Eww!
• Vvvroom! (sound of a car)

**************************************************
     2. Un-understandable words (sounds that he makes for these words are ALWAYS the same - thus, he *thinks* he is saying the right word.)

• Chloe
• Jake
• Ty
• Out

It's taken a while, but I think we are finally starting to understand and communicate better with Jaxen.  After his diagnosis, we were given a lot of advice and opened a lot of doors and different ways of thinking for Jerry and I.  Jaxen's been trying to communicate with us all along, Mom and Dad just had to *learn* to understand him.  It seems that Jaxen is starting to say more words and communicate better non-verbally with us. . . it just proves he's known everything all along.  Mom and Dad were the problem and have finally figured out how to show Jax how to communicate with us better.  Things are only going up from here, with the help of Missouri First Steps, we plan on catching Jaxen up in the language department.  Hopefully, by his 3rd birthday he will be caught up completely and not need speech therapy through the school district.  However, failing to meet this goal isn't negative -- we already had in place a retesting date with the school district for a re-evaluation next school year (August/September - after school starts up).  And at that time, if more speech therapy is needed Jaxen will begin speech classes at the school. 

So ultimately, I could have 3 kids in Cass-Midway next year!  :-)
Though only 2 get to ride the school bus.

**This list will update as I think of other words Jaxen says OR if he starts to say more words.**

Jaxen's Speech :-(

Speech and Language of the 18-Month-Old

*Bold/Italic are the things that Jaxen CAN do @ 20-months*

 

Uses 10 to 20 different words

Recognizes pictures of familiar persons and objects

Starts to combine 2 words, such as "all gone", "Daddy bye-bye"

Uses words to make wants known, such as "more", "up"

Imitates words and sounds more precisely

Points and gestures to call attention to an event or to show wants

Points to own toes, eyes, and nose

Brings familiar object from another room when asked

Turns pages of a book a few at a time

Follow simple commands

Makes a tower of 3 to 4 cubes

Knows and says the names of 5 things

Hums and may sing simple tunes

Mixes real words with jargon, on occasion

Develops a play routine

Practices words and word combinations

 



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As you can see, we have some work to do.  Jaxen's speech evaluation appointment at Children's Mercy was a few days ago because he wasn't talking.  And Jaxen was diagnosed with what Jerry and I already knew. . . his lack of talking is NOT normal and it's NOT because Chloe and Jacob do all the talking for him.  Jaxen was diagnosed with a learning disability.  {Man, that is hard to say out loud!}  Jaxen's Receptive language is completely average for his age group.  He understands and comprehends language as well as any other 20-month-old.  However, Jaxen does not have the ability to express himself.  Scoring only a 75, he was diagnosed with Expressive Language Disorder with Articulation Impairment.  Age Equivalent: 10 months.

As hard as it had been to get an official diagnosis and to have to say, "Jaxen has a learning disorder", I now know that we can do something for him.  He's not alone anymore, we are all on the same path.  As our family, I think it's important to keep you all up to date.  We have to push him to say something and at this point a sound is as good as a word.  But we can't push too hard, he NEEDS to have a positive experience with talking or we won't get anywhere. 

A learning disability.  That is a hard pill to swallow for me, somehow I feel responsible.  Where did we go wrong?  I feel like we've failed him in someway.  Of course, it's only a personal feeling because I know in my heart that Jerry and I have done and are doing everything we can for Jaxen.  We've had him tested early, and from what we are told, NOW is the best time to get him back on track. 

With starting so early, Jax will have an easier start in school.  There is a HUGE possibility that by the time Jax starts kindergarten, he will have caught up with his peers and be "cured" of his disability.  With that being said, no disability is curable, just manageable.  He most likely will need extra attention for a while, and not necessarily Special Education classes or Speech and Language Therapy.  With intervening early, Jaxen should progress well in school.  It will be the responsibility of his teachers and Jerry and I to make sure that he doesn't fall behind and to get him the resources he needs to be successful in school.

I know school is a long ways away for Jaxen, but that is the goal that we have set for him.  Ideally, we want him ready to enter kindergarten.  Of course, his speech and language will still be developing so the use of a speech class may be needed.  However, the doctor said that Jaxen's burn to his mouth and tongue could have just set him back.  They have seen cases where when the child has experienced a trauma in his life, there speech/language is affected.  But with speech therapy he should catch up pretty quickly.

Now for our game plan.  Because Jaxen is 50% behind in two categories - Expressive Language and Articulation he should qualify for Missouri First Steps.  Which is like a "Head Start" Program; however, Head Start doesn't start until age 3.  I have called Missouri First Steps to see if he qualifies for speech/language therapy but I'm still waiting to hear back from them (Holiday Weekend).  Children's Mercy Hospital put him on their speech therapy waiting list but we are looking at at least a 4 to 5 month wait.  And I am looking into Parents As Teachers through the school district for help.  

I've made a million calls for help and advise.  We are really wanting to get him on track before he falls too far behind.   Yet another hurdle that we will climb with Jaxen!!  It's a good thing we love him!!  Keep him in your prayers.

Accident Prone?!

Sunday afternoon, we went to a celebration picnic for Relay For Life.  It was a family event at the park - a way of saying thanks to those who worked so hard.

Jerry wanted to go "make an appearance" before he had to head to work.  I got the kids ready and fed them before hand. . . you never know what they are going to eat at events like these and I like knowing that they have at least eaten something.  So while we ate and visited with friends, the kids played on the playground.  Chloe took Jacob and Jaxen and pushed them on the swings.

Then the kids decided to play on this huge hill - which I told them to be careful on because they could get hurt.  Needless to say - Chloe took a pretty good tumble. . .

Knees - all bandaged up.

Arm

Other arm

Face

Then in a seperate accident, while chasing after Chloe - Jaxen took a tumble and scratched his face all up.

What am I going to do with these children?!  I think they need to be wrapped in bubble wrap!

Doctors & Getting Old

It's been an insane week - too many appointments to keep up with.  Last post was about Jaxen's -month well baby last Wednesday.  On Thursday Tyler had a very uneventful 4-week well baby.

Friday the 13th made my baby 1 month old and brought with it the big appointments.  Jaxen's checkup at the KU Outpatient Burn and Wound Care Clinic.  They gave him the all clear with the burns on his hand and arm.  However, next month we are seeing the head of plastic surgery Dr. Bhavsar to re-visit the idea of plastic surgery to the scars on Jaxen's face.  The concern isn't with the coloring. . .it will fade to the color of his skin.  The concern is for the thickness of the scar. . . as of now it will be noticeable for the rest of his life.  We have a special prescription lotion that we get to apply to his face 2-3 times a day that is suppose to help reduce the scar tissue.  The lotion is so special the Walmart Pharmacy had to order it for us and it's going to take 7-10 days for it to come in.  Hopefully, the lotion does it's magic and Jaxen doesn't have to have surgery.  However, Jerry and I are prepared for some decision making on getting the plastic surgery for Jaxen.  As you all know, this is the year to get it done if it needs to be done since our insurance is maxed out. 

On the way home from Kansas City, Jerry asked me to call and get him an appointment with our doctors office to get his hand xrayed.  finally!  He has been in pain for weeks!  Every time anything touched his thumb he about came unglued it hurt so bad.  And it was getting worse by the day, Friday he couldn't even hold a cup of water to drink!  So it was time to see a doctor - WHY ARE MEN SO DIFFICULT?  Had it been me or the kids, he would have insisted we be seen immediately.

The doctors office was able to see him that afternoon.  The kids and I went with him but ended up staying in the car because it was just easier - Jaxen and Tyler were sleeping, Chloe and Jacob were watching TV.  Well, once again Jerry's blood pressure was extremely high - this is the second time he has been in the doctor's office within the past month and registered a high blood pressure reading.  :-\  {After his doctors appointment we went to Walmart and the blood pressure machine told him to see a doctor ASAP}  Needless to say, Jerry came home with a prescription for high blood pressure medicine and goes back August 2nd for a full blood work up to get everything under control.

His hand xray showed that he didn't break or fracture his hand - instead he was diagnosed with gout. 

Gout is a kind of arthritis.  It can cause an attack of sudden burning pain, stiffness, and swelling in a joint.  Gout is caused by too much uric acid in the blood.  Most of the time, having too much uric acid is not harmful.  Many people with high levels in their blood never get gout.  But when uric acid levels in the blood are too high, the uric acid may form hard crystals in your joints. 

The doctor told him that gout is found mostly in men and it can bring a grown man to his knees overnight.  So Jerry also got a prescription for an anti-inflammatory to take care of his pain.  The gout will go away in a few weeks but they can't really treat the gout and put Jerry on blood thinners because of his high blood pressure issues.  So hopefully, this all helps him manage his pain and come August 2nd they figure out all the little things that are wrong with him. 

Geez!  He's falling apart on me already!  I know I shouldn't but I can't help but tease him.  It's all really funny to me, I thought I was feeling old and falling apart after birthing four kids!  Although he's making me scared to turn 30. . .

. . . I have two weeks before all the doctors appointments start up again. . . I think I might have to get a bigger calender!

Jaxen's 18-month Update

Jaxen's 18-month update was this afternoon.  Thank goodness the doctors office calls a couple days before to remind you because I didn't write it down in my planner.  And in fact, when the office called I didn't even listen to the message, I assumed that they were reminding me of Tyler's appointment on Thursday.  However, when they called again the following day to remind me of Tyler's appointment.  So I re listened to the answering machine message and it was in fact for Jaxen.

Jerry stayed home with Chloe, Jacob, and Tyler.  It was just me and Jaxen.  :-)

After all the basic question and answers that happen at every well baby checkup.  Jaxen completely excels at his 18-month milestones - walking, running, climbing, clapping, drinking from a cup, feeding himself, etc.  He excels at everything EXCEPT talking.  By now Jaxen should be saying at least 6 words fluently - the absolute minimum.  So by it's self, the lack of talking isn't a huge deal - most 3rd, 4th, 5th born children are slower to meet certain milestones because they don't have to with older siblings.  It's a little odd, that Jaxen is excelling at everything else except one thing.  So we are being referred to a Speech Therapist to verify that there is something going on with Jaxen. 

The doctor thinks Jaxen is fine and that he will develop his speech in his own time.  BUT if there is a problem - it is 10 times easier to correct a problem now, verses when his struggling in school.  :-\  So we are just waiting on a call from the doctor's office letting us know when Jaxen can be seen at Children's Mercy's Speech Therapist.

Jaxen also got caught up on his shots this afternoon.  I'm not sure why and how we fell behind with Jaxen's immunizations but we did.  And because we had to switch doctor's, our new doctor wanted to wait until they received Jaxen's medical records to verify that he didn't receive the immunization.  It's been a crazy fight with the lab personnel to get Jaxen up to date because they didn't want to double immunize.  But I wanted him immunized because you have to have proof of these immunizations before they can start school.  And it is much easier to hold an 18-month old down for a shot verses a 5-year old!  Dr. Beatty totally agreed with me and got the shots for Jaxen.

Tomorrow, same time/same place is Tyler's 1 month checkup.  :-)

Wic

This morning the older boys had a WIC Appointment.  These appointments are so annoying and are fairly short. The hardest part is getting everyone up, dressed, and out the door.  Since it's a pretty big deal to get everyone ready AND JERRY WAS HOME.  I just took Jake and Jax.  I left Chloe home with Tyler.  :-)  Brave step for me, but Jerry was home  - tired and sleepy but home.

This appointment was Jacob's last for Wic.  He turns next month {OMG! When did he grow up?!} and is officially graduated off the program.

The boys were very well behaved while we were there and it gave me the confidence to take them upstairs to the Health Department and apply for Tyler's Birth Certificate.  Which isn't a big deal, just some paperwork to fill out and $15.00 later you walk out with a copy of the birth certificate.  But little things like that can be a nightmare with unruly children! 

So it's official, Tyler is ours - the birth certificate says so!!  :-)
Here are the boy's stats :::

At 4 years, 10 months, 1 week and 5 days old, Jacob is 38.5 pounds.
At 1 year, 6 months, 3 weeks and 2 days old, Jaxen is 29.5 pounds.

Also, Jaxen and I both had our iron checked and passed with flying colors.  :-)

It's the little thing that make me happy.



I posted on facebook a few days ago that I needed a double stroller for Jaxen and Tyler.  I friend of mine here in Freeman seen the post and this morning look what I found sitting on my front porch!!

Jaxen in the front seat.



It's an older model and it's been well used, but I think we can get some use out of it still!  Jaxen hasn't left it alone since I've brought it in the house!

Jax - trying it out.

 Both seats fold back and the canopies cover the kids pretty well.  Maybe this would help keep the sun off Jaxen's face while we are out and about this summer!

Jaxen Ryder

Now, I've only pushed it around the house, but it's really long and still handles like a normal stroller.

Jaxen - trying out the back seat.  {He's can still see the tv from the back seat - THAT'S why he's not looking at me!}

There are still some things I can't figure out and a piece that Jerry has to pop back on but so far I haven't found anything too wrong with it.

He can still see where we are going!

His "Grr" face.  LOL

 And when you can get a 17-month-old to sit in it for a long period of time because he WANTS to, I think we have a winner!

Just waiting on little brother so we can really try this thing out!!

I really have amazing friends!  :-)  Thank you Kelly!

35 weeks. . . J & T

Last side-by-side to compare Jaxen & Tyler.

On the left, 35 weeks was the last pregnant picture I have of Jaxen. . . he was delivered 7 days later via emergency c-section and spent 6 days in the NICU.

I took the picture on the right tonight. . . which officially marks the 35 week mark with Tyler.  Let's just hope I have longer than 7 days before he is delivered.

I'm trying really hard not to get nervous -- and I'm trying not to compare the two pregnancies -- but it's hard.  SO many things on my to-do list before Tyler arrives. . . and my personal deadline is 7 days!  In 7 days, I hope to be all packed and ready -- something I wasn't with Jaxen.

20 day checkup - Good-bye Bandages

This little guy. . .

Jaxen enjoying his fluff-a-nutter sandwich...

. . . is completely free of bandages and wound care!!

Today is a happy day!  20 days after Jaxen's initial burn, we are free and clear of all the "extras" we've had to do since his stay in the hospital!!  No medicines, No scrubbing, No band aids, No Zeroform, No ace bandages and best of all - No fighting him to sit still through another "Doctor Mom & Dad Experiment"!  Just when I was getting use to it and getting his hand wrapped like a pro with the colorful wrap, so that he wouldn't mess with the actual bandages and medicines.  {It's true, the doctor at the Burn Center said that they would hire me to wrap the little kids' hands.  LOL, they obviously don't know my child well enough, because I HAD to do something to get him to leave the dressings alone.  Jaxen could take off the regular dressings as soon as you weren't watching.  And you could bet your life savings that he would have them all removed by morning if he could get to them!!} 

We have another follow-up at the KU Outpatient Burn & Wound Care Center in 2-weeks.  And if everything is still amazingly awesome, that appointment should be Jaxen's final appointment.  Until then, we have to keep his burns lotioned and make sure if he's playing outside the wounds are covered or have 30 or greater SPF suntan lotion on.  I do have some sleeves for his arm - if he will wear them - to help with the sun this summer.  Biggest thing they stressed was to keep it lotioned - not to let it dry out - so that the scar tissue will stay moist and flat until it heals 100% and not to let the new skin get a sun burn this year because it would cause the scar tissue to be worse than it is now.

After our appointment, we took Jaxen back up to the 5th floor's Burn ICU where we spent 7 days.  The nurses were SO happy to see him.  We got to see 2 of our 3 favorite nurses -- Abby and Hannah.  Megan wasn't working today but we told them that we would be back in two weeks to visit again. . . hopefully, she will be working then.  Jaxen was a total ham for the ladies. . . he even got a Popsicle from them.  Jaxen is definitely a ladies man -- and he would laugh when we called the nurses his "girlfriends".  It was a fun visit, so much better than the last time we had contact with them all.  Next time, I am taking some goodie bags to them -- and you bet your bottom each bag is going to have a package of the Girl Scout Thanks-A-Lot Cookies.  = )

Jaxen - 2 week Update

Picture Update on Jaxen - Enjoy!

Jaxen's burn - 2 weeks later.

Jaxen's arm

Jaxen's hand - probably the slowest healing burn he has.

All the goodies you need to clean, care, and cover Jaxen's burns.

Jaxen's Drug Store.

It's good to be home.

Well you all know how it goes, it was easy to update at the hospital when the big kids were with Grandma and Jax was pretty out of it.  Since being home, life is back to it's craziness!

Jaxen is doing SO well!  He is getting into everything and keeping us on our toes.  Giving Jaxen his medicines and cleaning his wounds takes A LOT of time.  A made a chart to hang on the refrigerator - just to keep us all on track of when Jaxen gets his medicines.   He takes 4 different types of medicines, with a total of 6 different doses - not counting the Tylenol that he can have every 4 hours.  I am so glad that most of the medicines are about to run out.  It will really help out when we aren't on a constant time constraint with medicine schedules.

We also have to clean and re wrap Jaxen's burns once a day.  You can only imagine what kind of chore it is to have a 15-month old sit still long enough to wash, medicate, and wrap his arm and hand!  His lip is easy to take care of, but he picks at it a lot because he can.  So the key has been for us to keep the medicine on it - which keeps it moist and keeps it from scabbing over.  It's looking better and better every day!

The one thing that I am concerned about is Jaxen's breathing.  It's still quite labored at times. . . the medicine doesn't seem to be helping a whole lot.  I'm going to check with the KU burn center, but I think I'm going to have to get him seen by a Respiratory Specialist.  However, I'm not sure if I am suppose to go through the hospital or through Jaxen's pediatrician.

Jaxen has his first follow up appointment at the Outpatient Wound and Burn Clinic tomorrow at 9 am.  I feel like it's a test on how well Mommy and Daddy took care of him this past week!  I will let you know how tomorrow goes!!

Jaxen - Burn ICU - Day 6

April 6, 2012

1000am - I am so tired and frustrated today. . . it's making for a very emotional mommy.  After all the talk yesterday of going home, it's not looking too promising today.  = (  {I've canceled my doctor's appointment today and rescheduled it for Tuesday -- I can't leave my baby.}

Yesterday evening, Jaxen started sounded pretty rough with his breathing. . . I was concerned and asked the nurse to come in.  Respiratory came down and ran all kinds of test and hooked him up to a few machines. . . everything comes back normal.  He's moving air nicely through his lungs and he's getting enough oxygen saturation {Only time that the saturation went down was when the doctor was standing here -- imagine that!}.  Doctor ordered another chest xray to see if there is still fluid in his lungs. . . if there is, the labored breathing is helping him bring the yuck out.  For as much as they think it's nothing but time Jaxen is going to need, it sounds like they are wanting to keep us another day to make sure.  They are afraid that if they send us home, we might end right back up in the ER with him.  Which I totally understand but I am SO ready to go home.  I am missing Chloe and Jacob like crazy.  I am tired of doctors and nurses terrifying Jaxen.  I am upset that I might be missing Easter with my kids.  Heck, I've not even had a chance to get stuff for their Easter baskets.  Which upsets me so much!

This morning, Jaxen has had 3 breathing treatments.  Here in a few minutes -- at 11am -- Jaxen is getting started on his steroids and antibiotics {in case there is an infection in his lungs} and while they are making him mad, he's also getting some more Tylenol.

600pm - What started out as a bumpy day. . . has slowly turned out to be a good day!!  First thing this morning, I took Jaxen out of the crib and laid him in bed with me to cuddle.  He liked it.  He snuggled, he slept, he looked out the window, he played with the window nobs -- first sign that my curious boy was on the rebound.  Lookie . . .

So happy to see him exploring again. . .
either that or he was trying to figure out how to break out of the hospital.

 I got to play bad guy today.  Dr. Stall {burn doc} came by and seen Jaxen. . . he agreed with me that the amount of people going in and out was scaring Jax.  He told the nurses to do as little as possible and let him relax and rest.  Our nurse, Hannah, was awesome.  She let everything pile up and then come in once to get everything done -- after he had woken from a nap.  She never woke him up, we were on Jaxen's schedule.  I got to turn away a lot of people who poked there nose in when they snuck past Hannah.  Even house cleaning had to come back once Jaxen was awake.

Daddy and Jaxen cuddling -- he would not let Daddy move!

 This afternoon, after Jaxen woke and had some substantial food, {Vegetable Broth, Orange Jello, Apple Juice, & Ice Tea} I got out the toys I brought him and we played and played for a while.  He loved beating on everything and making his toys talk.  Eventually I got him up out of bed and we tried standing and walking.  Hannah said we could get him out of the room today and let him see more of the Burn Unit.  Jax was super wobbly at first -- I would be too if I was in bed for 6 days! -- but he quickly gained his sea legs and started walking around and eventually ventured out into the nurses station.  = ) 

We even got to give Jaxen a bath this afternoon!!  He didn't enjoy it as much as he would of at home but he played.  Here he is fresh out of the bath, all cuddled up under a warmed blanket!!

930pm - Sorry about cutting the last post short, but we had a little adventure.  They had a critical patient coming in and needed Jaxen's ICU room. . . which was cool because Jaxen had been downgraded by the burn team days ago - it's the Peds keeping him here - and they just kept him close by because they wanted too.  = )   They moved us out into the regular patient burn rooms -- which surprised me, I thought we'd end up in Pediatrics.  But apparently, the burn team isn't willing to give him up to the 4th floor OR they are wanting to keep us next door to Labor and Delivery.  {I promise - I really am behaving myself!!}  This room is nicer because it's quieter and it has 2 beds instead of one, so Jerry and I don't have to share a single sized hospital bed.

Shortly after they moved us Joanna and Caleb arrived to visit.  But before I could get downstairs to them, the Peds doctor stopped by.  Not at a good time for Jaxen, might I add.  He was doing SO well, but the 10 minutes the doctor was in - he was breathing funny again!  Grr!!  So we are going to re-evaluate him in the morning and only then talk about going home. 

1000pm - Jaxen is asleep, they have been in to give the rest of his medicines and to take his vitals.  Hopefully, little dude can sleep until morning.  His next medicine is due at 5am - if he wakes up before we will give it to him then, otherwise we will put it off until 6ish.  Only bad thing is that he has to have labs drawn but they are going to do it all together in one shot so that he can get some rest before the doctor's visit in the AM.

Jaxen - Burn ICU - Day 5

April 5, 2012

700am - Like I've said before Mr. Jaxen is a fighter.  Daddy took the night shift and let me get some sleep, I was hurting pretty bad.  Jaxen kept Dad on his toes all night. . . he's coughing up a lot of mucus.  Which is a good thing, he's clearing his lungs.  He freaks out a little with the suction straw, so for the most part he is being allowed to cough it all out himself.  They have also fed him all night long through the feeding tube. . . which he hates.  So needless to say, Jaxen and Daddy did not have a good night.  Hopefully, this morning they will turn off his feeding tube and at least allow him to rest comfortably for a while.  Nurses are in the process of changing over now, Daddy's going to try and get some sleep {at least until Kylie gets here to see if he'll eat} and Mommy is coming back on duty.  I hope you are all having a fabulous morning. 

Jaxen - Burn Unit ICU - Day 5

430pm - Wow, the day has gotten away from me!  Jaxen has made some BIG advances today.  This morning the Peds Doctor was in before her shift - bright and early! - to check on little man.  Even though it was a rough night, she was so happy with his progress overnight.  During the nurse shift change, our nurse from yesterday came to check on Jax and I questioned when the last time he had gotten a pain reliever. . . Noon yesterday!!  My poor baby!  We quickly put an order in for some Tylenol. 

Kylie was here as promised to let Jaxen try some food.  He did really well with the swallowing of juice but he was having troubles swallowing chunks.  Kylie was thinking that the feeding tube was hindering his ability to swallow correctly because he is so small.  After talking to the doctors about the feeding tube - they agreed to remove it and let him try to eat.  Yay!!!  However, before the tube was removed, Jaxen did throw up a lot of mucus and part of his foods. 

After resting a while, Kylie came back and let Jaxen try again.  He did wonderful!!  He ate applesauce, apple juice, fruit, and graham crackers.  Kylie game him the green light for food. . . Doctor's said he can start with a liquid diet today, whatever he wants tomorrow.  {But since Jax is friends with all the ladies on the floor, he got some applesauce from his nurses. . . and technically, it's not on the liquid diet.  Shhh!}

Here we are after the feeding tube was removed.
A short time later the rest of those stickers and wires were removed also! 

Jaxen has had tons of visitors today - so many that I'm not sure I can remember them all!  I know a nurse from the Outpatient Burn & Wound Center came up and talked to me about the physical therapy that Jaxen is going to have to have.  We will have to stretch and massage the scars on his face so that they heal correctly and without scarring - and they will show us how and work with us to get it done.  Jax will have multiple appointments with the department to make sure everything is perfect.  A cool little fun fact - considering the circumstances, of course - Jaxen will get a little "Micheal Jackson" glove for his hand like Grandpa had!  :-)  After the wounds all heal closed, Jaxen will start having the medicines and creams to rub into his burns -- again, all that will come from the outpatient clinic downstairs once we are discharged -- for now we have to keep an ointment on the wounds until they heal closed. 

A child psychologist came by to talk to us about the fears and behavioral issues that we might now experience with Jaxen.  He was really nice and super helpful, even giving us advise on how to address somethings with Chloe and Jacob.  I have his card and he welcomed communication even after we get discharged.  A team came by to show Jerry and I how to change the dressing on Jaxen's wounds.  Jerry was awesome at it!  But had we not felt comfortable in changing the dressing, they were going to set up a at-home-nurse to help us out with the task.  But since Jerry proved to them that he was a pro -- they will send us home with EVERYTHING we will need. . . right down to the scissors used to cut the old dressings off!

As you can see, these were just a few of the many visitors that we have had.  There was a Social Worker that came by and helped us out with the paperwork we needed for work.  A lady from Admittance finally came by for our signatures and insurance. . . since Jaxen arrived by himself - they didn't get anything from us.  Also, we've heard there is a visit from a "Toy Lady" in our future. . . the possibilities seem endless!  I am really impressed with this hospital {someone please remind me of this when the bill comes. . . lol}!

Jaxen has ate 2 meals so far today on the liquid diet. . . he's eating broth, jello, applesauce, and apple juice.  Jerry and I have managed to sneak away while Jaxen

Jaxen also had an EKG test done on his heart.  While he was sleeping this afternoon he was having some very irregular heartbeats. . . it would go from 113 to 88 to 97 to 114 back down to 85.  So for precaution AND for mommy reassurance the test was done and we are still waiting for the results.  But I imagine if it was bad they would be doing something about it.

Well it's taken me about 1/2 the day to write this because of all the visitors and hanging out with Jaxen.  I'm sure there is a ton more I am forgetting and will remember later, but I am going to post this so you don't think we have fallen off the face of the earth!

1150pm - Jaxen was FINALLY able to get some sleep. . . it was only a 2-hour nap but it was much needed.  Jerry had to be "Papa Bear" and practically demand that people stay out until he woke unless it was absolutely necessary.  Which most things weren't, they held off on all his medicines and checkups until 1050pm when we opened his eyes on his own.  I had to hang a blanket over the end of his crib so that Jaxen wouldn't wake up to EVERY single person who came to the door. . . the blanket also helped with his anxiety attacks.  Once we told the nurses that he was awake and they could do what they had to do, Jaxen got a diaper change and got all his meds including some more Tylenol.  Now we are back on "Let my Baby Sleep Mode". . . Jax has one more medicine to be administered but it goes into his IV and they can do that once he's asleep.  Jerry walked downstairs to get us a drink {& midnight snacks}, we both got potty breaks, and Jaxen ate {more like scarfed} some more applesauce!!!  :-)

Check back for more updates. . . 

Jaxen - Burn ICU - Day 4

April 4, 2012

200am - Just as promised, Jaxen was switched from one sedative to another.  With the combination of drugs, the tentative plan is to waken him and pull the breathing tubes at 10am - unless Jaxen has other plans, which they are prepared for!  So far tonight he has been a perfect angel. . . besides a low heart rate, which the doctor is still okay with, our new night nurse has yet to believe all the rumors she hears about Jaxen being a rebel!  The Jaxen's "team" hasn't left his side all night and this room has been dubbed "Camp Jaxen". . . everyone is prepared for a fire ant to awaken at anytime!  *fingers crossed* that everything remains this calm and collected. . . if sitting here running through all the scenarios isn't bad enough, watching them wheel in the pediatric crash cart is enough to worry me half to death!  Now they say that it's just a precaution and that when he wakes up, everything that they will need will right there which will limit the running in and out like crazy craziness!  But deep down I know part has to do with his little heart rate being so low.  The Peds doctor did warn me that they might have to bag him in the beginning if he fights, just to make sure he's getting enough oxygen, but they have 100% faith that he can and will handle everything on his own.

845am - Jerry and I actually got sleep.  I know doctors and nurses went in and out a million time last night for labs / medicines / monitoring / etc., but I honestly needed the sleep and they promised to wake me if something was going on.  About 800am, I came to and notice Jaxen was fighting them quite a bit - so now I am wide awake.  Jerry's helping hold him down and keeping him calm.  It's so hard for me to stand over the crib and watch him struggle and cry.  I have to walk away frequently. . . I am not built to be this strong.  Doctor's know of Jaxen's alertness and will be down in 40 minutes {finishing up with another kiddo} or less to remove his tube.  Until then it's a battle of strength. . . Jerry & the team of nurses VS Jaxen.

1000am - Daddy is awesome.

1015am - Breathing Tube, Catheter, and the stomach tube are OUT!!  Only thing still in are the IV's and the feeding tube. . .

1230pm - So Jaxen is awake and updates are going to be a little more spread out.  He is a fast little guy and this morning he has already managed to pull his feeding tube halfway out.  = \  Jaxen is off all his IV medicines - only getting fluid from his IV - so I've advicated for him to get a dose of Tylenol.  Nurses seemed fine with that and will be in soon to give him something for the pain.  The speech team should also be up here shortly to interact with Jax.  They are going to figure out if he's swallowing good and make sure his throat is okay so he can get the feeding tube removed and start eating on his own.  The guy hasn't gotten but one feeding since being admitted Sunday.  Other than waiting for the speech team, Jerry and I have taken turns holding and comforting Jaxen.  He still fights but seems to be getting some good naps in and is less restless.  I will try and get you all updated after our visit from the speech therapy team. 

200pm - Jaxen managed to cough the feeding tube out some more.  They had to call for a chest xray to verify it's placement and calculate advancement.  The feeding tube is going to stay in tonight so that he can get some nutrition.  Jax ate some applesauce for the speech lady but he was still pretty out of it. Tomorrow morning Jaxen will be their first visit around 830-900am - and if he willingly eats and drinks for them, the tube can come out then.  Unfortunately, it looks like we might be here a while longer. . . when things calm, Jerry and I are going to have to figure out what we are going to do with Chloe and Jacob AND figure out something so I don't miss my own doctor's appointment on Friday.  = \

1000pm - Sorry for the lack of updates, but Jaxen is FINALLY getting a lot of deep sleep - in fact, I fell asleep with him around 5pm and didn't wake up until 730pm!  A much needed, solid sleep!  In fact, we found out later that the PICU Doctor came in a we were passed out cold and they let us sleep.  I feel bad that I slept so hard and missed their visit, but the doctor's are thrilled we were able to sleep.

Let's see if I can catch you all up on the events this afternoon.  Jaxen has had his burn dressing changed, linens changed, and a little sponge bath.  They tried to feed him once but he wasn't taking to the tube feeding - it was upsetting him.  This evening they started it really slowly, while we was sleeping and they've increased the speed {however, he's getting agitated again so I might ask them to turn it down a little}.  As much as he doesn't like it, it's giving him some energy and helping dilute the medicines in his systems because he's more awake now.  All the night nurses are on shift now and most of them have stopped by to see Mr. Jaxen. . . he's got quite a following of girls on this unit!  :-)

Other than the feedings, we are just hanging out.  Jerry and I got to talk to the kids this evening.  The first question out of both their mouths was if Jaxen was feeling better.  Chloe wants to know when we are coming home and Jacob talks about how much fun he's having with Grandpa.  :-)  It was good to hear them both laughing and giggling together.  Brought smiles to our faces and made me miss them even more.

Sorry to cut it short but I am not feeling so well - baby is not letting me forget he's here too.  Apparently, it's time for gymnastics so I'm going to lay down and see if he calms.

Jaxen - Burn ICU - Day 3

April 3, 2012
615am - This morning, Jerry and I woke to the sounds of bells, whistles, sirens, code alarms, pagers, and phone ringing.  Quickly followed by a fury of people running into our room.  NOT the way I wanted to wake up this morning.  : \  Our nurse, Wes, was here by himself and Jaxen's oxygen level was around 70% - needs to be in the 90's - and he started coughing.  Jaxen was fighting and Wes knew he needed another set of hands to help so he sounded the alarms.  The team showed up and orders were yelled, people were paged, and the started to bag Jaxen {breathe for him}.  Wes got Jaxen's oxygen tube suctioned out and Jaxen's vitals quickly went back up.  They were worried about him aspirating {throwing up and it getting into his lungs} or removing the breathing tube himself - so they reacted quickly.  Everything seems perfect now, they brought his medicines back up - they were slowly lowering it overnight - and they are going to hold off on another feeding for a little while.  Everyone apologized for waking us up like that, and as scary as it was - yes, I cried!! - we would rather them be on the ball about everything then waiting too late.  Nurses and Doctors are starting to change shifts, so I'm sure we will have some updates this morning. . . Overall - it was a pretty good night.  Mom and Dad got "some" sleep - the nurses were starting to feel sorry for us!

1000am - Some of Jaxen's favorite nurses stopped by to see him this morning.  He's quite the little spectacle on this unit.  They are all use to running in here and calming him down - he's just being himself!  The are so excited to hear that the plan this morning is to keep everything the same and give Jax {& Mom and Dad} a day of calmness so he can relax.  Tomorrow morning they are wanting to take out the breathing tube.  And we have been warned that it will be a difficult process.  Jaxen will have to come out of sedation and breathe 100% on his own at comfortable levels before they pull out the tube.  Now he is breathing on his own but under sedation he's not doing anything extra.  The machine isn't letting him forget to breathe.  They will need to know that he's going to keep his oxygen in the 90's without backup.  SO Mr. Jaxen will fight, kick, scream, hit, cry and just be down right ticked off for a while until they are sure he's able to handle it on his own - then they will take out the breathing tube.  {They say it's like having a straw down your throat - he HATES it!}  They are all confident that Jaxen will then return to his rotten, ornery self once he's unhooked from the machines and allowed to play and be mobile.  And EVERYONE is looking forward to that!  Again, just a matter of time. . . can't rush things because putting the breathing tube back in is NOT an option on their radar.  When it comes out Jaxen is going to be able to maintain and handle everything on his own.

I know I was secretly hoping that they would remove the tubes today but I understand the importance of waiting.  Jaxen is a fighter and he thinks he's ready but he also seems to think he is invincible! 

1030am - Jaxen's oxygen levels were lowered he's not getting any "support" - he is just getting help "maintaining".  His lungs are doing good and they are making sure that there are areas in the lungs that are strong and not going to collapse once the breathing tube is pulled and he's on his own.  One more milestone to reach sometime today on the ventilator - but they are confident that he could reach that milestone now, they just don't want to rush or do too many things at once.  Doctor's are making their rounds and once I get their update I will let you know. . . could be minutes or hours from now - you know Doctors!!

11:15am - Doctor's made their rounds.  They are so pleased at Jaxen's progress over the last couple of days.  I'm not sure how they see progress while he's under sedation, but they do - so that's a good sign.  They adjusted his ventilator again - getting close to not having to have it!!  They have plans to adjust the pain and sedation medicine overnight so that by morning he is ready to get the tubes out.  Jaxen and Daddy are napping peacefully. . . for the moment! = )

1220pm - Jaxen did it again - only this time he pulled out the IV in his arm.  The nurse came in to adjust the bed differently to try and keep him comfortable.  I was helping her move Jaxen down in the bed when I noticed that there was blood in his arm splint and upon looking further the splint was wet.  That's when we found that the IV was pulled out and Jaxen wasn't getting ANY of his sedation.  So you can imagine how the last couple of hours have gone. . . Ahh!!  It's a good thing that they had placed an IV in his foot yesterday so they were able to hook him back up pretty fast.  He's better now, under sedation again.  They are wanting to change the dressings on his burns but will wait until they know he is completely back under and comfortable.  He's also been ordered up a round of labs at 1pm - which means that they will have to replace the IV in his arm.  = \  So for obvious reasons it's good to have the backup IV.

325pm - Jerry and I got some lunch while they gave Jaxen his new IV.  And actually Jax did so well that he got two new IV's.  They also took an xray

Jaxen's burn dressing, diaper and bedding.  They upped his medicine so that they could clean out the burns - all the dead skin had to be removed - and Jaxen did perfectly!  He didn't even flinch until they were done and the medicine was applied.  His biggest flight is that he wants to lay on his belly and he can't with the tubes.  Other than that his nurses are calling him a Rockstar. . . Mommy and Daddy are still sticking with Monster!  = )

620pm - Doctor in charge tonight walked by Jaxen's room as he was fighting / biting on the breathing tube - which sounds the bells and whistles.  He just got another dose of the steroid - so that goal of 24-hour steroids has been met.  Right now the doctor's are disagreeing on what to do.  Tonight's doctor is wanting to do it now while there are more nurses and staff around to handle him verses waiting until 2am when they change his sedation and he removes the tube himself.  ALL his nurses are saying he's ready and fighting for the removal of the tubes tonight.  Will keep you updated!!  *fingers crossed* that no matter what the decision it's what's best for Jaxen.

900pm - Well it looks like the doctor's are going to wait until morning to pull the breathing tube.  Jaxen got so restless that the nurses spoiled him a little bit and picked him up allowing him to stretch and be held.  He cuddled with one of his nurses for about 20 minutes before they laid him back down.  Since laying him back down, Jaxen hasn't moved.  He's being a good little boy on that end.  However, the main concern now is his heart rate.  The peds doctor has been by to see Jaxen and has assured me that he's doing fine.  BUT his heart rate is slowly falling into the 50's.  So I ask that everyone keep Jaxen in their thoughts. . . he has to get that number back up, if nothing else, at least for me!  I'm barely hanging on with all these numbers and alarms!!

{check back throughout the day for updates...}