A Haunting Memory

On Monday, April 4th, Dallas had a routine ECHO in the morning and an appointment to change his g-tube afterwards.  His ECHO went very well, and his g-tube was changed without any trouble.  Dallas didn't seem 100% himself, he wasn't eating his normal amounts, but wasn't fussy either.  We were at Children's for about 4 hours and then headed to my sister-in-law's (Renee's) house to pick up Dakota.  When we arrived. she was napping, so Dallas and I settled in for a visit.

Fast forward about and hour, Dallas was laying on the floor and Renee and I were next to him.  He looked tired and uncomfortable and he did a little shake, almost like he got a chill or got spooked!  I smiled and looked at him and it only took me a few seconds to realize he wasn't breathing.  His face became dusty, lips were blue, eyes rolled back.  Renee (thank GOD) called 911, and I proceeded to pick him up and scream and scream and scream.  After panicking all over the living room, laying him down, blowing air in his mouth, trying to think of how to do CPR, I ran outside with him and screamed for help.  It's a bit of a blur as pure panic took over my mind and body.   The 911 operator was telling Renee to get Dallas laid down flat on his back, so she started to tell me to do that and I came back in the house and laid him down.  Just then a couple of neighbors came running in and one of them knew what she was doing and took Dallas and rolled him over, by this time Dallas had food running out his mouth and nose and his eyes were back, his color was returning.  He was starring into space and although didn't seem "with" us, I knew he was alive. However,  I continued to be hysterical by the thought of losing him.

We went in the ambulance to Children's and they did many tests, although they said right away that Dallas had most likely had a febrile seizure (fever related).  This type of seizure is apparently very common (I have never heard of it) and happens in 1 of 25 kids during the age of 6 months and 5 years.  Half of these kids will never have another seizure, and the other half will go onto to have another one, or keep having them into childhood.  Prevention of fever is the key to keeping this from happening again, but in Dallas's case, we think the seizure might have happened first and then the fever.  Fantastic.  Anyway, they tried hard to find a source of his fever, and we had no luck.  All of his blood work came back normal, as well as his urine test and chest x-ray.  They also did a CT scan, because Dallas's mother (i.e., me) insisted on knowing that this wasn't a brain initiated seizure.  This too, came back normal.  On a side note, the ER stay was brutal for us and for Dallas.  It took 3 different people, 3 tries in his foot, one in his head, and finally ended in a finger poke, to get all the blood they needed.  It was gut wrenching to watch, but you know they have to get the blood in order to help him, so you can't beat them up!  The very second someone starts checking Dallas's veins, he knows what's coming and he just cries and cries.  It sucks.

His fever continued all day yesterday and we think it's teeth related.  His gums are swollen and he doesn't like to eat.  He seems to be feeling a little better this morning.  Happy boy!

I have informed Dallas sternly, that he is to never do this again. 

Watching Tangled, Dakota requested his presence and he was happy to oblige!

9 Months

Dallas is 9 months old.  Wow.  Before we know it, he'll be turning one and he will certainly have much to celebrate.  He had his well child check up yesterday, which is somewhat hilarious as this child sees at least 2 medical professionals per week...so his "check up" was mostly updating his pediatrician on everything that's happened over the last 3 months.  Dallas weighs 21 lbs, 7oz, and is 27 3/4 inches long.  This puts him, on a "normal" growth chart, at 70th percentile for weight and 15th percentile for length.  We are so proud of our guy, he is growing so well.

His weight is getting to be a bit much for me (mom) to tote around in the infant car seat.  He cannot sit on his own, so we are still dragging the car seat in and out of everywhere!  That being said, he has added "medical" physical therapy, in addition to his already "educational" physical therapy.  The only difference here is that one is provided through the school district and the other takes place at Children's hospital.  We are already seeing progress since adding PT at Children's.  This is both exciting for us and for Dallas as he is also getting bored with lying on the floor....

The guy is eating incredibly well despite his reflux and nose structure/breathing issues. He knows no different and just does a wonderful job.  Although he has not used his g-tube in 3-months, his pediatrician does not want it removed until he proves he can drink from a cup, eat solids (other than baby food), and swallow thin liquids.  He does not have a repeat swallow study or feeding analysis until the end of April, so the g-tube will remain in place for at least a few months.

Dallas has a big surgery taking place on April 12th.  He will have his ears, nose, and throat examined and opened if/where necessary.  He will also be having a repeat CT scan and MRI to help us make decisions regarding cochlear implants.  Finally, his urologist will perfrom both a right and left orchiopexy. Ugh.  Big day for the D-man, but he'll do great.

Meanwhile, he and his sister continue to get to know each other.  Usually every morning Dakota comes straight into my room and demands that I get up immediately.  BUT, yesterday morning, she shouted to me from across the hallway "Mom, Dallas is awake, you need to get up."  I walked in to his bedroom to find her sitting in his crib with him.  She looked at me and said "See mom, I gave Dallas some toys while he was waiting for you."

Really?

Happy Valentine's Day!  It has been an exciting day for the Bauer's.  Dallas has been wearing one hearing aid for 2 weeks now (yes, we lost one) and this morning we are finally back to two.  He also got new ear molds, so the aids are fitting nice and snug again.  They did a sound booth test to see if Dallas would turn his head towards sound, and he DID turn his head at 65 decibels (which is a slightly higher volume that normal conversation).  He did not respond to lower sounds, but they aren't sure if he got bored with the test or if he truly couldn't hear the sounds.  Either way, we were all pleased to see him respond to the first set.  This basically tells us that if hearing aids can get him hearing at levels just above conversation, cochlear implants should get him one better.  Lots of "if's" with the cochlear implants, but this is a start.

Last week, Dallas got a helmet to correct his odd head shape.  Since he is still not sitting up, he spends a fair amount of time on the back of his head which doesn't allow for normal growth.  He is tolerating the helmet really well so far.  I think the worst part for him is that it makes him too warm.  He runs warm anyway, so this just brings on the sweat.  We will have to get some lighter clothes on him!  This process could take 5-6 months and he wears the helmet 23 hours per day.

Dakota started a mini-preschool class 2 weeks ago and she is loving her time there.  It is only one day a week for 1.5 hours, but I think it is just what the doctor ordered for all of us.  Dallas gets to spend some time with some new faces as well and I am becoming very educated with the other moms as we discuss child raising topics. :) 

Scott and I started sign language classes last Monday and we both left there knowing the alphabet.  We were excited about that and can ...very slowly...spell words to each other.  The instructor is wonderful and an inspiring person to boot.




Got Camo?






Dallas had a wonderful first Christmas.  Aside from a recent ear infection, he has been a happy and healthy little guy both throughout the holidays and over the last month.  He continues to eat like a normal healthy kid and has not required any feeds through his g-tube.  He is cruising through his clothes like crazy, I put a pants outfit on today and they looked like shorts...he's a weed and it's great.

We have recently stepped up the therapy to try and get his motor/muscle skills closer to where they should be.  He lacks in muscle tone and core strength.  His trunk muscles are floppy and he is still a far cry from being able to sit up on his own.  These therapy sessions are some of the only times I see Dallas upset.  He does not like to work on his muscles!  We'll get there.

Christmas Morning



Umm, is that a swim shirt?



Ok, I am ready to get out now.





Dakota "Cheese, now give me a sucker."




Why doesn't anyone else in this house have to be propped up on a noodle?



You are so funny mom!

---

Dallas continues to keep us on our toes as we have been at Children’s for 3 days.  I brought him in on Monday morning around 1am because his heart was racing and he was breathing fast.  When we arrived in the ER, he had a temp of 103.3 and his heart rate was consistently over 200.  This happens when babies get fevers I guess!  He was diagnosed with pneumonia within an hour of arriving at the hospital.  It was visible on his chest x-ray and lab tests showed his body was compromised by a virus/ bacterial infection or both.  Dallas did a heck of a job fighting this off, and it helped that he had great care.  They put him on both oxygen and HiFlo and this helped slow his breathing down.  He earned a reputation of being a little troublemaker after he managed to screw up two different IV’s that were placed in his head.  They gave up after the 2^nd one, and decided he could get meds through his g-tube.  He loves to pull on anything that doesn’t normally belong to him or on him. J  We just got home a few hours ago and Dallas is incredibly happy!  He does not stop talking and smiling.  Other than some antibiotics for the next week, it’s back to normal for Dallas.

In other news, sounds like I am hosting a broadcast television show, we had the "Cochlear Implant panel" last Thursday at the University. This day did not bring much new information, nor was there specific good/bad news. We discussed the device itself, the complex nature of the surgery, and the extensive therapy required afterward. The plan is to have a repeat CT scan in March and possibly schedule the surgery for one ear sometime in late spring, early summer. Dallas's surgeon expressed great concern regarding the potential success of the implant, but did not discourage us from thinking this could be his best shot at hearing.

Dallas has not had a feeding through his G-tube since December 6th. After 10 days of only oral feeds, he had gained 10oz! We are not sure where he is at now, but he will be weighed again in 2 weeks to make sure he continues to gain weight appropriately without any G-tube feeds. He certainly is getting that chubby cheeked, chunky leg, 6-month old baby look! We love it.

Here's a picutre of Dallas right after he pulled out his 2nd IV.  Looks pretty guilty!

The time just flies by, Thanksgiving is over and Christmas is right around the corner.  Dallas has remained healthy through “Round 1” of the holidays, although his sister managed to catch quite a cold.  She has been pretty good at keeping it to herself so far!

Dallas had his 3-week post-op appointment this past Tuesday and his nasal passages have remained open.  This same surgeon that has done all of his airway surgeries, is the same person that has been discussing cochlear implants with us as well.  Up until this appointment, he has expressed guarded optimism (but optimism nonetheless) relative to the surgery.  He has always felt that he would try one ear and see how it went.  Now he is feeling like Dallas may not have the anatomy for this surgery.  He previously said no further CT scans would be needed, but is now mandating another CT before the surgery.  Additionally, this was always planned for 9 months of age, approximately March, and is now being pushed out until Dallas turns 1.  In the end, we certainly don’t want the surgery to take place if there is not a good chance of it being successful, but it was a little disheartening listening to this new found pessimism.  In any event, we are having a group meeting in 2 weeks to discuss the implants further.  The implants have to be approved by a state medical board of some sort and the approval takes 3 months.  A repeat CT scan is being planned for late February.

Last Thursday night we stayed at Children’s for a follow-up sleep study. This was to confirm that Dallas’s oxygen saturations were adequate without air support at night.  GOOD NEWS!  He PASSED!  Of the 9 hours he slept, he only had 14 minutes where his saturations were below the acceptable range.  So, he is officially off air at night for now.  We continue to monitor his levels every night, so that if there is a change we can address it.

Dallas is eating well!  I would say he eats 80% of his food orally, and the other 20% via G-tube.  He has another swallow study next week to see if he can now tolerate thinner liquids.  As of now, he still drinks his bottles at a “honey-thick” consistency.  He weighed 15 lbs this past Friday.

We are still keeping very busy.  We have 2 appointments next week and 3 the following week.   Also next week, I am getting the opportunity to meet two other mom’s that have sons with CHARGE syndrome.  It makes me a little nervous, but I know it will be good to meet other parents who have been through this before.

We are almost 2 weeks post-op and Dallas is doing much better than last week.  It usually takes 2-3 weeks for him to get back to himself relative to sleeping and eating.  He is almost back up to what he was eating orally, and is sleeping comfortably again.  He is such a happy, delightful baby.  You can reliably make him smile or laugh by doing “SOOO BIG,” or by tapping his hands or feet together.  He loves taking baths and getting his diaper changed!  That’s my boy!

Last week, he had his first eye appointment.  I braced myself expecting the worsed, the doctor would for sure tell me he was near blind I was certain.  Thankfully, the optometrist was “unimpressed” by Dallas’s coloboma’s and stated how small they were.  He indicated very little impact they would have on his vision.  He does have stigmatisms in both eyes, which could cause some blurry vision, but this is treatable with glasses down the road if the stigmatisms don’t change by age 1.  What a relief.  I told the optometrist that this was the best appointment we’ve had in 5 months, and he said he was glad he could give me good news, but he seemed disappointed that Dallas’s wouldn’t be a good “case” for him.  C’mon people, seriously.

We heard back on the heart CAT scan which showed that the narrowing was not significant enough to warrant surgery at this time and we’ll continue to have ECHO’s every 6 months to keep an eye on it.  More good news!

We finally received the genetic confirmation that Dallas does in fact have the CHD7 gene mutation that is found in 75% of CHARGE kids.  This doesn’t change anything or tell us anymore that we know already, but it does mean Dallas would have a 50% chance of having a child with CHARGE because he carries the gene. L  The geneticist explained the mutation simply like this; the gene basically stops doing its job early.  Because this gene is required in so many organ systems, these kids are so widely affected when the gene doesn’t complete its’ job.  Explains why many of Dallas's organs were incomplete or are still  incomplete....ears, kidneys, heart, etc.

Yesterday Dallas got his 3^rd set of ear molds (that attach to his hearing aids).  These are the best fit thus far and they aren’t constantly squealing!  The bad part is that he is getting old enough now where he realizes they are on his ears, so he likes to pull them out!  Hence the cheesy hat in the pic below!  It’s not our goal to make him look like little bo peep, but you do what you gotta do.

We are looking forward to showing him off at the Thanksgiving festivities; we have lots of family that has yet to see Dallas in person!  However, you’re always thinking about the germs so our goal is to keep him and his sister healthy throughout the holidays.

Oh, I can’t believe I almost forgot this….he has still been maintaining his stats at night and not requiring air support.  We will be more excited about this once we can prove it to his pulmonologist.  He has a repeat sleep study on December 2^nd.