18 Months

18 Months

The realization of Dallas being 18 Months is exciting and sad at the same time.  When you hit age milestones, and don’t have the behavioral or physical milestones to go with it, it can get you down.  More and more I find myself thinking about all of the things he is not yet doing.  The older he gets the easier it is to see the gap.  But then I remember how many surgeries and illnesses he’s had and battles he’s had to fight and that reminds me of how incredibly strong and great he is doing.  Sure I wish he was running all over and getting into things, but he will get there in time.  Patience was never my strong suit, I think I have said that before, but Dallas is helping me dig for patience and I do think I am getting more of it. J 

He turned 18 months on December 9^th and his well-child visit was on that day.  He came in at the 38^th percentile for weight, 54^th for head size, and 11^th for height.  Pretty good for a kid titled “failure to thrive,” in his first few months of life.  His immunology labs came back and his levels are on the low end of “normal” for response to infection, but he does not respond to certain immunizations.  He was put on a daily maintenance antibiotic for that, but otherwise there is no port treatment recommended right now.  This is a good thing, but we still have the whole IV issue which will just present itself at the next “event.”

The last week was miserable for Dallas.  He got sick last Tuesday with a fever, coughing, and vomiting.  He was still not better by Friday, so he was put on a steroid and a very strong antibiotic.  He had a rough weekend and today is OK.  Still some discomfort of some kind and lots of coughing.  We are happy that he will be on a strong antibiotic treatment through Christmas, so hopefully we can have a healthy Dallas for the holidays!

Blessings to all and have a Merry and HEALTHY Christmas!!

Dallas got in about 2 weeks ago to get the immune labs drawn.  It was another ordeal, not surprising!  It took 2 people and three attempts to get the blood, but at least they got it.  They did try to keep Dallas comfortable by giving him gas, but this made him puke so then they decreased the gas for rounds 2 and 3 and he was screaming his lungs out anyway.  We do not have any results yet.

He is otherwise still a handful, but things are improving.  We have a hat that we have been having him wear all the time and this has been helping tremendously with keeping the cochlear device in place.  He continues to make good progress at his speech appointments and we can almost say for certain that he turns to his name!  It seems like he enjoys sound a lot, so I believe his new idea to remove the device whenever he can is behavior related.  He knows that we prefer him to wear it, so anytime he wants our attention or is upset, he pulls the device off.

We started a weekly feeding therapy last week.  His progress in this area has been at a standstill for quite some time.  He only eats pureed foods and drinks warm milk from a bottle.  He has done some straw drinking and barely any chewing.  Our first priority is to get him chewing.  Simply being able to toss some Cheerios or crackers on his tray would be wonderful, as any level of independence would help us all a great deal.

The new look

Laughing at Thanksgiving

It has been a rough several days for the Bauer household. Dallas has not been himself and it's definitely taking its toll. It started last Thursday when he started refusing to wear his cochlear implant device. He had been doing really well with it and hardly ever pulled it off on his own, prior to this day. I kept trying to put it back on him and he got more and more mad, so we finally gave up. Friday and into the weekend were the same story, he refused to wear it. He was also not sleeping well at night, which again, has always been a strong suit for him. He wakes up screaming and then thinks it's time to be up for the day around 4am. By Sunday morning, he was really not looking good and started throwing up around 9am. After the vomit started looking green, we became concerned that this could have something to do with his recent surgery, so we took him into the ER. They found no issues with his stomach other than it was really backed up with stool. We were back home Sunday afternoon, and Dallas has been back to eating and drinking fine. On Monday, we headed up to the U of M to try and figure out why he refuses to wear his device. They didn't have any solid answer and could only guess that he started to not feel well, so he removed anything that irritated him further. They decided to reprogram the device back to a much lower volume, to try and get him back to wearing it. Since then, he is doing OK with it. Still pulls it off quite a bit, but not screaming when you put it back on. It's all very frustrating to take these steps back. On top of it, he is still not sleeping well at night and very crabby most of the day. I am really hoping this is all related to teeth...it's hard not let your mind drift to more serious explanations when it comes to Dallas's history. I have decided to give him until Thursday to start making some improvements and if there is no change, we need to get him in and find out if there is something more going on.

We did see the immunologist last Thursday morning and the conclusion was that they need more lab work. Very unfortunate that this determination couldn't have been made prior to his surgery, so that the labs could have been drawn at that time. We know they can't just draw labs on Dallas in the clinic as they have never been successful in the past. It's no different than trying to start an IV on him. So now they are working on setting up a time for him to come in and have some sedation along with ultrasound, and their "best" vein finder, to get the labs they need.

Video below was catching something that actually amused Dallas recently!

http://youtu.be/ALhm8lvg79o

HOME SWEET HOME

Today was a good day. I do not feel so beaten. I do realize I may have made some assumptions or misjudgment in my sleep deprived state. Dallas's pediatrician was paged today and stopped by to talk about the situation. She explained the significant risks of Dallas having a port while also having a cochlear implant, plus a potential immune system deficiency. I was also informed that Dallas may be able to get treatment for his immune system through shots versus blood transfusions. We did discuss the separate issue of him simply being a ridiculous IV start as well, and she did empathize and understand the pure awfulness of the ordeal we just went through and have already been through many times. She just said we really need to think about this and weigh the risks and benefits. I expressed my concern about the immunology appointment now being in January, and she said she would help get that moved up to sometime in the next week or so. Sigh. This conversation changed my perspective on the entire hospital stay. This morning I was not looking doctors in the eyes...just nodding and not asking questions. I felt so down and upset. Now I feel a lot better, probably because I am home too, but everything made more sense upon leaving today.

Big thanks to the staff at Children's. Dallas is home, happy, and healthy.

It’s interesting in life how things can change on a dime. Since feeling “heard” last night, I now feel right back where we started. All the docs that were here on the night shift went home and I think Dallas’s pediatrician got word of the events and just said we are not doing a port right now. The vibe today from surgery too is that they just want to get him over this and get him home. Me, and Dallas, want to go home more than anyone, but I don’t want to be back here in a month, at 2am, with a sick child that needs an IV. The issue goes beyond a potential need for immune system treatments. The issue is that you cannot get and IV into the kid, therefore you cannot draw labs either. I refuse to imagine another round of people trying to get and IV going on Dallas.

I am exhausted from fighting. I feel like I fight and fight and fight, and today I absolutely feel defeated. We will be going home and this will inevitably resurface time and time again. I wish there was some way to get the point across; I just can’t seem to do it. Or maybe there needs to be someone to give me a good enough explanation as to WHY we cannot do a port. The reasons I have heard are lazy and from people too busy to think about it.

Dallas tolerated the Pedialyte overnight in his feeding tube. He has been getting whole milk through the tube for the past 2 hours, so he has had just over an ounce and seems to be doing ok with it. If he continues to tolerate the milk, the plan is to get him home sometime tomorrow.

Tonight, Scott and I will take Dakota trick-or-treating, while Nana stays at the hospital to watch over Dallas. I will come back up after the fun and stay the night with him.

HAPPY HALLOWEEN! I dressed up the kids together last week to get some pictures!

The afternoon and early evening brought quite the turn of events. The PICU doctor became less confident in his idea to start a central line once he had time to review Dallas’s chart in full. He got another PICU doctor on board and the brainstorming began. They were debating putting the line beneath his collar bone, as there is risk there of hitting the lung. The safest spot is in the neck, but then there was concern with intubation. They decided to get general anesthesia and general surgery involved and discussed how they would sedate him without an IV, and then the risk of the sedation wearing off before the line was in, etc, etc. At this point, I began to feel very uncomfortable with the whole idea and starting asking if this was really necessary if Dallas could potentially start eating in the morning. Then we would have put in this central line for less than 12 hours of use….seemed like a lot of risk for a not a very important purpose (just to keep him well- hydrated).

The Head of Anesthesia was paged in to come in a little earlier than her scheduled shift. She was great and was by his bedside in a matter of minutes. She suggested that she herself try and start a regular IV on Dallas. She felt very good about a vein in his foot….so we agreed to let her go for it. No luck. This was our last straw and she knew it. I felt like for the first time, everyone started to really see why we turn white when someone suggests a lab draw or an IV poke for Dallas. The proof was all over his body and all the experts got to give it a try. Also, for the first time, we felt in complete control of Dallas’s care. Suddenly my (our) voice was much bigger and held more clout that it had before. Scott and I explained how he was supposed to have had a port placed…..we no more than said the words and the anesthesiologist was adding him to her OR schedule for tomorrow. But I explained how it wasn’t that simple. We needed to get Dallas’s pediatrician and his immunologist involved and really understand the reasons for holding off on the port in the first place. Of course, it’s Sunday night and none of those people are around, but all the calls were placed and everyone is here tomorrow, so this will get figured out first thing in the morning.

As for the other issue of hydration, they have started giving Dallas an incredibly small amount, ½ ounce over 1 hour to be exact, of Pedialyte through his g-tube. They will see how his belly responds overnight and make a decision regarding eating in the morning. If he still can’t eat, and it’s decided that he does not need a port, then he will have to get a central line placed.

Sigh. That was a mouthful. We’ll see what they decide tomorrow. While I am sorry Dallas had to go through more pokes today, I feel so glad that this all happened because we have finally gotten through to the right people and no matter what happens, I think this will improve the way his treatment goes in the future….Oh, and we will sort of be sneaking in our immunology appointment early and hopefully get to the bottom of what is really going on with his immune system, if anything at all!

Another day of no food for Dallas. :( To make matters worse, we lost his IV. We tried to explain once again that he is an incredible difficult stick and they seemed to sort of listen....but we still went through the same song and dance that we always do. We took him down to the ER, since that is where their best IV starters are, and they tried twice with no luck.

They contacted the PICU, Pediatric Intensive Care Unit, and the doctor working over there today came by to talk with us. The plan is to start a central line underneath his collar bone. He has to be sedated for this and there are some risks of infection or blood clot. We don't feel like we have much choice on this one, so we said let's go ahead with it. We are hoping at this point that they can get the line in his chest; otherwise it has to go in his neck which would be less than ideal (as he would have to be intubated again to put the line in).

On the upside, the smelly child did get to have a bath today! Took a few of us to get it all organized, but it was nice to get him into some fresh jammies that were not stained with pee and bile!

The day started well, but as the day progressed, Dallas’s belly did not tolerate the Pedialyte as well as we had hoped. He was given 2 ounces of Pedialyte and this afternoon we were about to try an ounce of milk when the nurse came in and felt that his stomach was big and felt too “full.” She put the tube back on to vent him and we got a fair amount of bile out. You could tell Dallas felt much better after that, but it also meant his body was not absorbing everything properly. The nurse made a call to the doctor and they said no more liquids today, we’ll try again tomorrow.

It’s a bummer as the days here do not get shorter….it’s draining. We understand that they don’t want to push Dallas and just have to take things slowly. Patience. Not one of my virtues. Hoping for a better day tomorrow.

Here’s a picture of Dallas getting in some playtime with his auntie Jamie!

Dallas's bowels did not wake up yesterday, so he did go another day without eating. I came home last night to spend some time with Dakota and take a much needed shower!

Scott is there with Dallas and said that overnight and this morning, he noticed a few "toots" and the nurse also heard stomach movement. Today is the day! Dallas has been happy all morning and we got the green light to try giving him some pedialyte and see what happens. Dallas has never drank anything other than his milk, his choice, so Scott said he was quite surprised when Dallas downed the bottle of pedialyte!

LADD Procedure

Dallas's surgery was yesterday and things went fairly smoothly. Although, prior to him going in, I did stress that he is a tough kid to intubate and also and impossible IV start. The anesthesia DR looked at me with those skeptical eyes and pegged me as another mother who thinks their kid needs special treatment. He had a far different tone after the procedure. It took 8, yes EIGHT, attempts to get the IV going (he has all the bruises and pokes to prove it). He also noted to intubation was in fact a challenge and that perhaps if he has another surgery, they will have an ENT surgeon come to place the tube. The only change surgically, was that they were not able to do the laparoscopic approach and they had to open him up. His incision looks really good and is about 1.5 inches long. His intestines were pretty well coiled and the surgeon said he got everything straightened out, literally! They took his appendix out too.

Most of yesterday was just trying to keep Dallas comfortable. He was on a fairly high dose of morphine which eventually caused such significant desaturations in his oxygen levels that they put a nasal cannula on him to get him some oxygen. After this, they discontinued his morphine. They tried a couple of other drugs, which did not do the trick and he was restless and uncomfortable all evening. Because he only has one kidney, the pain killers that he can take are limited and usually are not the ones doctors would generally use. He usually ends up just getting Tylenol. :(

He slept fairly well throughout the night, but did not wake up a happy camper. I sat in his crib with him from about 7am until 11:30am. Every time I tried to get out, he screamed. He cried steady for the first two hours and finally the surgeon was paged in and felt his stomach. It was bloated. Sometime overnight, the nurses had closed his vent (there was a tube open/vented from his stomach to help drain stomach bile). The surgeon re-opened the vent and sure enough, tons of bile started streaming out and Dallas finally quit crying. He still whimpered on and off until 11:30, when he finally fell asleep. Because this bile isn't being absorbed by his stomach, this tells them that Dallas is not ready to eat.

He will remain vented to rest of the afternoon, and then they will try again to close it off for 4 hours. If when they open it back up, there is no bile, then the will consider starting to feed him again. This is definitely going to be a process, and we were informed that today will be or should be the "worst" day. Child Life folks did bring by a bottle of bubbles and that cheered Dallas up for a little bit. He was even kicking his legs, his signature move!

Watch him sign on YouTube: http://youtu.be/7tx3aOKUfyQ

Well, the pre-op appointment was today and we are a "go" for surgery.  However, there has been a change in plans regarding the port.  Dallas's surgeon talked to the immunologist and they decided that they are going to hold off on the port for now.  While this is frustrating because we'd prefer to get it done now, the reasons behind it do make sense....I think.  They want to try Dallas on the IV blood treatments for about a year and make sure that they work for him before they place a port.  The part I do not like about this plan is that starting an IV on Dallas is like mission impossible.  It has taken up to 1.5 hours to get an IV started on him, and that's while he's sedated.  I am trying to keep an open mind and I will see how this all goes before I throw a 2-year old tantrum.  The port would just be much less pain and heartache for all of us....but if the treatments don't help him, then we'll be glad we waited.  The bad news is that our regular appointment with the immunologist was of course scheduled for this Thursday at 10am......right during surgery. :(  So, the new scheduled date is January 5th.  Another 2.5 months of waiting, not to mention 2.5 months of cold/flu season.

Dallas had an exciting appointment with speech today.  We are still in the early stages, so at each session I try and distract him with a toy and then the speech pathologist will make one of the LING sounds and try and get Dallas to turn his head and look for the sound.  The sounds are "ah, ee, shh, sss, mmm, and ooooh."  He will generally turn to 3 of the 6, but today he responded to ALL of them!  We were clapping and so was he.  We really needed this today.



Can't you see I am at a tea party?  Pick me up please!!!



 

New haircut!

 


Bath time!  My FAVORITE thing to do.





Gimme the spoon, I can do it.



It's a beautiful day!



I get by with a little help from my friends.



Dallas's surgery has been scheduled for Thursday, October 27th at 9:15am.  He will have the Ladd procedure (to correct the malrotated intestine) and also have the port placed.  The Ladd portion of the surgery will involve taking his appendix out and then tacking down(for lack of a better word) his large intestine so that it is not at risk for twisting (a normal intestine tacks itself down during the first 4-7 weeks in utero).  Dallas's intestine is currently floating around and his body has made an attempt to tack itself down by creating useless "bands" near the top of the intestine.  These bands will need to be removed which causes such a significant amount of swelling, it takes several days for the intestine to recover and begin functioning again.

The surgery itself is scheduled for 2.5 hours.  His hospital stay is estimated to be about a week.  If things go perfectly, his stay could be as short as 4 or 5 days. 

Upper GI Results

Dallas had his Upper GI this morning and the radiologist confirmed the findings from the dye study last Tuesday.  His intestine is in fact malrotated.  I did ask the radiologist why his Upper GI at birth was normal, since it is my understanding this is something you are born with, and she said she could only guess, but it was probably just missed or it was at just the right angle to make it appear "normal," when in reality it was not.

We believe he will have to have the Ladd procedure to correct the problem. (I have researched this surgery online, but don't want to explain it until I get confirmation from the surgeon...)  The radiologist was sending report to his pediatrician and we are just waiting to hear back regarding meeting with a surgeon.  This finding is frustrating to me as there have been signs of potential GI trouble.  I did mention the events at his 1-year checkup which lead to the immune system check, but GI wasn't considered (probably because his upper GI at birth was "normal").

My chest feels heavy over this one, but I keep telling myself, THANK GOD Dallas pulled his g-tube out on Tuesday morning.  We are so lucky that this was caught and hopefully will get corrected before his intestine actually twists and creates a block causing very serious trouble for him.

The Implant

I would say the "equipment" necessary for Dallas to "hear," has been our biggest challenge over the last 3 weeks.  If there was a magical way to keep everything "ON" him, that would be wonderful.  It falls off 50 times a day.  It has added another component to everyday life and it is taking some getting used to for everyone. 

It's not only a challenging transition for us, but more so for Dallas.  It's a whole new world for him and he has to learn how to listen and respond to sound.  The first step has been teaching him to "detect" sound and then respond.  We have been learning ways to encourage a response by making it rewarding and exciting for him.  It is not as easy as many would think....this will absolutely be a process.  We have made the decision to go cochlear (as I have been calling it) and do not regret it, it's just far more involved than we ever could have known until we are incorporating into our daily life.  Both school staff and hearing team at the U of M seem to be encouraged by how Dallas is handling everything so far.  He has been through 10 different programs and many volume increases and so far he has been tolerating it all without a fuss.  He has his first round of official sound booth testing this Wednesday.  They will simply sit him in a chair in the middle of the room and present sounds to see how he responds.

This is the device pictured above.  The round piece is attached via the magnet that was placed under his skin.  The ear piece is the processor, and the portion clipped on his shirt is the battery.  The sound goes into the microphones on the processor, processes the sound and sends it to Dallas's brain through the piece attached via the magnet.  Technology is amazing.

"Exciting" Morning

Dallas, Dakota, and I were watching cartoons and playing in the living room this morning when I noticed Dallas's entire g-tube laying on the floor.  Yikes!  He pulled it out.  It was 7:30 am and by the time we got into the ER and had it replaced it had almost been 2 hours.  They had a little difficulty getting it in, but all went relatively smoothly.  There was a dye test conducted at the end to make sure the tube was in the right place, which it was, however, there is now speculation that his intestine is malrotated.  The Upper GI study done when he was born showed no indication of intestinal issues, and since this is a condition you are generally born with, we are scheduled to have a repeat Upper GI this Friday morning to confirm/deny the diagnosis.  If his intestine is in fact malrotated, he would have to have something called a Ladd procedure to correct the problem, but we are not going down that road until after the test on Friday.

Going Cochlear!

Dallas's cochlear implant was turned "on" today.  It went exactly as we expected.  When it was turned on, he cried.  Keeping it on him will be our greatest challenge (as you will see in the video below).  He is constantly taking it off, but as with everything else, he has to get used to it.  We felt relieved that he had a response and that everything seems to be working, that is really all we could hope for.

They have set the sound on a low setting and we will very gradually be increasing it until we reach a point where we all feel Dallas is getting the most out of it.  They do not want him to dislike the device, which is why they start low and move slowly.  We were sent home with 4 programs, meaning we can increase the sound as he is tolerating it.  Then we go back on Wednesday for a programming update where we will get more programs added to his remote and so on.

The video below shows the very first set of testing.  At this point they are making sure that the electrodes implanted are working properly.  This video shows a very obvious response from Mr. Dallas!

http://www.youtube.com/watch?v=ZXXDVgYnHFY

On the way to get my "ear" turned on!

15 Months

What I thought was going to be a great 15-month check up turned in to quite the opposite.  Dallas immune system lab results came back and he has what is called "Hypogammaglobulinemia." This is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood. Immunoglobulins play a dual role in the immune response by recognizing foreign antigens and triggering a biological response that culminates in the elimination of the antigen.

Basically, he cannot fight off infection, nor does his body respond appropriately to inflammation, or certain immunizations.  And now for the treatment.....he will have to have a port placed under the skin near the top right side of his chest.  This port will then be used to administer monthly blood treatments.  He will need this blood for the rest of his life.  Once he is older, he will get it in the form of a shot.  The blood is taken from humans, pigs, horses, etc., then purified before given to him.  We do not see the immunologist until the end of October to get things started.

Also, his linear growth (height) is deficient.  He dropped from the 4th percentile to the 1st percentile.  We will be meeting with his endocrinologist in October to discuss potential treatment options.

This was all very unexpected and will take some time to absorb.  What I think about most is Dallas, so many appointments, therapies, surgeries, needle pokes, etc.  He goes through so much and still manages to be such a happy guy.  I pray there is never anything that takes the wind out of his sails.

We finally had our official follow up appointment today with the surgeon.  It lasted approximately 2 minutes.  He didn't even sit down!  Anyway, he did see some improvement in Dallas's face, which we have also begun to notice.  There are subtle signs that some movement is returning.  This is incredibly encouraging and gives us hope.  I tried to imply that perhaps this could have been prevented by placing the ear tube back in right after surgery, and his response was that it would have filled with blood and resulted in a loss of the tube, thus resulting in the fluid and inflammation problem anyway.  At any rate, it is what it is and he seemed optimistic about the improvement thus far and thought it could all be back in another month or so.  He also stressed that Dallas's nerve path is much different than "normal" and the final outcome is not black and white.  We have heard lots of different timelines, so I won't hold my breath on any one time frame......I just think we have to be patient and believe there is a good chance for a full recovery.

Monday we get the device activated!  We will video tape and post an update early next week. 

Waiting for the doc!

We Miss Your Smile

It has been a long week since the ear tube surgery.  We have waited anxiously for the movement in the right side of Dallas's face to return and there has been no improvement.  I left a message for the surgeon yesterday and we heard back this morning that it could take anywhere from 4-6 weeks, or even 4-6 months for his nerve to recover.  While this is very disheartening, at least our expectations can be more realistic and hopefully I can stop analyzing his every facial movement wondering if there was a slight improvement here or there.  For me, this has been very difficult to deal with.  One of my prenatal doctors gave me some advice when I was pregnant, which I didn't much appreciate at the time, but I know exactly what he meant by it now.  He told me that there was a bright side to having a child born with a disability; you can grow with their disability and start out from Day 1 knowing and loving your child as they are with their disability, versus having a typical child for years and then one day in their life having something tragic happen and then your child winds up different after knowing them a certain way for so long. While I know Dallas wasn't injured tragically, his smile was his signature. Without it, he is different to us.  The story mearly helps me understand why this has been so hard on me versus anything else. We got such a kick out of that boys grin and it made us smile every time.

Dallas is otherwise improving as it relates to his appetite and overall disposition.  He seems happier, although just not quite back to himself.  He is starting to eat and drink much better comparing to a week ago.  For now, it will be back to focusing on his strength, his eating/drinking/chewing skills,  and soon his hearing and speech. 

There will not be a morning that passes where I won't hope to walk into his room and see his big smile again, I can wait....just not forever. :)

D-man is out of surgery and Rimell said "Good call," on getting him in here and having the tube put in.  There was a lot of fluid and he said that had to be an uncomfortable pressure for the little dude.  He said we should see big improvement by the weekend.  Yeah!  We miss our Dallas and look forward to having him back to his happy self.  We are so thankful the surgeon came in today on his day off (and he was in his t-shirt and shorts) to help us, and especially Dallas.

Additionally, he had immune system labs drawn at the time of last Friday's surgery.  While we don't have official word from his primary pediatrician, the attending physican on staff here said that even though one of the four numbers came back below the normal range, since all of the others are normal, this should not have a significant impact on his immune system.  We had these labs done because Dallas is almost always sick and seems to pick up any and everything.  Guess that's just the way he is!

Dallas hit a speed bump in the recovery process and we are back up at the U getting things resolved.  He has gone downhill since Monday.  He has been more fussy than usual, not eating well, but the kicker was when the right side of his face stopped moving.  Once that started, then the swelling near the incision site looked noticeably more swollen, so we called in and brought him into the ER around 9pm last night.  It took 5 hours to get an IV started and a CT scan.  The IV start is always more than a challenge, but this one took the cake.  After the first attempt, Scott was nauseous and laying down and the ER doctor was crying with me.  That was a first.  It is so awful to watch.  The second attempt was similar, new person, new ultrasound machine, numbing medicine on board, but this time they got it.  We were so relieved as this IV was a must to do a CT scan with contrast and they were so concerned about meningitis initially, that they wanted to get the antibiotics pumping immediately.

Thankfully, they are saying the labs and looks of the fluid on CT scan appear negative for infection, but could be causing pressure on the facial nerve resulting in the paralysis. Today, the surgeon Dr. Rimell is coming in on his day off to replace the PE tube(ear tube) that he removed during the cochlear implant surgery, to help drain the fluid. 

Hopefully, if all goes well, we can get the tube in and go home with oral meds.  They are optimistic that his face will  start moving again over the new few days.

We are all back home and Dallas is recovering very well so far.  He is slowly working his way back into his eating regimen and has been getting plenty of much needed rest.  His sister rejoined us this morning and you can tell her energy takes his mind off of anything he went through the last couple of days!

Late on Friday night, we had the chance to speak with Dr. Rimell's understudy who was sitting in on the surgery.  We asked her if she had seen a lot of implants done and she replied "Yes, but never have I seen anatomy like your sons."  She said it was very unusual and that Dr. Rimell was remarkable not only in being able to place the electrodes, but also knowing where the facial nerve would be and how to avoid it.  This story is relevant mostly because it made us feel more confident in our decision to stick with the U of M, versus switching his care to Mayo.  I agonized over this decision right up to this very moment before the conversation with this gal took place. 

Additionally, the bronchoscopy that was performed was completely normal from an anatomy perspective.  We were looking for some anomaly or slow reaction in the voice box as suggested by Dallas speech pathologist and feeding specialist.  It was good news to have this confirmed and also gives us the green light to go ahead with VitalStim Therapy if we choose to do so. This therapy uses electrical stimulation to help with dysphagia, i.e. difficulty swallowing.  It is very involved from a time perspective, my understanding is that it is 3 times per week for 3 months. It is also not guaranteed to work. We do not have time to incorporate this immediately into our regimen, but we may look more into this once we have the cochlear implant activated and are through the first several programming appointments and have a good speech therapy plan established.  We are currently set up to see speech at the U of M every Monday, and then programming changes take place separately.  At first there are a lot of programming changes and then it tapers off quickly once we feel like the program settings are optimal for Dallas.  With weekly  physical therapy and Early Intervention on top of that, the weeks are filling up.  The school district also has a speech pathologist that can join Dallas's team, and we are going to try and have her work with his U of M therapist and perhaps we can work out a plan together to have the school do therapy in our home every other week and alleviate some of the trips to the U of M.

Dakota is starting preschool this year!  She will go twice a week and starts the day after Labor Day.  I am very excited for her to be able to get out of the house and do something that is just for her.  I think she will love it and enjoy interacting with lots of kids her age on a regular basis.

Saturday Morning Cartoons! On a 52 inch screen TV.  The children's hospital at the U of M, is brand new and the rooms are crazy nice.  Too bad we didn't find the staff to be crazy nice, as that is far more important.  It was funny though, one of the nurses asked us if they could get us anything and Scott replied "Yes, how about a bigger TV!"

Cochlear Implant

After a long 5 hours, Dallas came out of surgery and is now recovering.  He is being admitted to the hospital for observation due to a couple of complications from the surgery.  He had some brain fluid leakage which has been stopped, but needs to be watched.  He also has some more significant airway swelling which he has been treated for, but once the medication wears off, they need to be sure the swelling does not return.

And now for the good news, the surgeon was able to implant 24 of the 28 electrodes.  This is encouraging and very good news.  Dr. Rimell said he thought about giving up a few times as this was one of the most difficult cases he has had.  We gave him a heartfelt “Thank You,” and off he went.  He had also looked at his airway for potential reasons as to why his swallow has not improved, and other than simply blaming CHARGE syndrome; he didn’t see anything else “fixable.” 

Overall, I’d say we are feeling very optimistic about the surgery results and just hope Dallas has a speedy and relatively painless recovery.

The implant will be activated on September 12^th, and this is the day he will truly hear our voices for the first time.  We will anticipate that, once this recovery is behind us.

Thanks for all the prayers and well wishes today.

Summer continues to whiz by before our eyes.  We took a last minute trip to the cabin last week and the kids and I had a great time with "Nana" Bauer.  Dallas and Dakota both spent time in the lake and got outside plenty to enjoy the heat!  Dallas has struggled to get healthy since the mid-July incident.  He has 4 teeth coming in and that has been hard on him.  I have come to the conclusion that his immune system is weak!  Seems like whenever he turns a corner, something else knocks him down. 

The cochlear implant surgery has been rescheduled for Friday, August 19th.  His operation is set to begin at 7:50am and last approximately 3 hours.  Fingers crossed we can keep him healthy and get this surgery behind us.

He continues to do well in physical therapy.  It's very slow progress, but it's progress.  He acts and moves similar to that of a 6-month old.  We don't focus much on that, it's merely a reference point to get an idea of where he's at and what others should expect when they're around him.  He is making strides in muscle strength and cognitive development.  You can see the wheels spinning up there much of the time!  He claps his hands and picks up a puff and puts it in his mouth.  He is very slowly and seldomly beginning to "chew" some introductory solids, such as puffs, cheetos, and yogurt bites.  We are also working on getting him to drink from a sippy cup. He plays with it and brings it to his mouth, but hasn't put two and two together yet.  I am very encouraged by the fact that his eating skills correspond with his physical skills.  Most baby foods will indicate an age, but also a skill that your baby should be doing before trying a particular food.  His skills match up with the foods he tolerates.  Very interesting!



In girl jammies!  His were all dirty, so Dakota reluctantly loaned him a pair of hers while at the cabin!



Today was supposed to be one of the biggest days of Dallas’s life thus far.  For us and our immediate families, we have been highly anticipating this day since the day we learned of Dallas’s profound hearing loss.  It is with great disappointment that I write the cochlear implant surgery has been delayed.

Dallas woke up Wednesday morning with a typical cold and after lunch he was clearly struggling to breathe.  I took him up to the ER and he was admitted that afternoon for respiratory distress.  He was treated with antibiotics, steroids, and neb treatments.  No-one knows why he was having difficult time breathing.  They treated him as though he has pneumonia, although there was no hard evidence that he did have it.  He was deemed unfit for surgery, as I suspected he would be, and we came home yesterday.  He’ll continue to be on oral steroids, an antibiotic, and neb treatments for the next week or so.

We had the second opinion down at Mayo yesterday and I left there with mixed feelings.  This surgeon had a far different demeanor and feeling regarding the surgery.  He was very positive and confident regarding the implant itself.  He was not confident regarding long-term outcome, and stated it would all depend on how Dallas's brain reacts to sound.  His brain may decide to take in the sound, but do nothing with it.  He stated that an improved quality of life for Dallas is a reasonable expectation.  He did agree that the implant is the only way to get Dallas any sound and also concurred that the hearing aids are virtually doing nothing for him at this point.  He felt like there were two options, do nothing, or do something.  This reassured us in our decision to go ahead and give the implant a try.  While I did like this surgeon's personality and overall disposition, it's hard to erase the connection with Dallas's current surgeon at the University.  He does express more skepticism, but we believe that to be his MO (so to speak).  He likes to under promise, and then over deliver.  Let's pray that's the case this time.

We have not rescheduled the surgery yet, but my best guess is that it will be about 6-weeks out from now.

Dallas has his first independent skill!!!!

Dallas had a great birthday and birthday party.  He could barely stay awake through his gift opening and did not make it to the cake and ice cream, but he enjoyed the celebration just the same.  Our family made the day very special for him and I know he felt their love.

The month of June went by so fast, I cannot even recall what we did.  I do know we continue to have appointments every week and that keeps us very busy.  We have a surgery date set for a cochlear implant in the right ear on July 15^th.  This is less than 2-weeks away and the anticipation is certainly leading to fear as the day gets closer.  Between now and then, we have 2 separate days scheduled at May to get a second opinion.  We will not have much time to make a decision after the second opinion, but I am hoping that my gut tells me right away.  I just want the ENT surgeon at Mayo to believe that there is a shot for success with this surgery.  I also want to hear that he would DO the surgery based on the information we have to this point.

Assuming the surgery goes as planned on the 15^th, Dallas will also have a bronch.  My understanding is that they will send a scope down his throat and look more closely at his voice box.  This will help us understand if there is “a flap” that isn’t opening and closing quickly enough to allow Dallas a normal swallow.   Depending on what they find, there may be something surgically done there as well.

On a fun note, Dallas had a great 4^th of July (which also happens to be his 1-year anniversary of the day we brought him home!).  He spent lots of time outside and went in the lake for the first time.  He did manage to get a flu bug and an ear infection, so he missed out on one day of fun, but then he was right back at it!  His family and friends commented relentlessly on his good nature and cute smile. J



Happy Birthday to me!



Is this supposed to be relaxing?

We kept a wet pair of swim trunks on his head to keep him cool!

Fun in the camper during a hail storm

The kids are really into the picture :)

I love you mom!!

Dallas turns “1” today!  Happy Birthday big boy!!!  I have slightly dreaded this day only because I knew it would force me to think back to one short year ago……

We went into the hospital on Wednesday morning, June 9^th, 2010.  This was not a day of excitement; it was a day of fear.  We knew he wouldn’t be able to breathe, and that alone was petrifying.  There was an incredible team of doctors and thinking back, they did a fantastic job of making us feel like this was a “normal” delivery (other than the fact that there were about 15 of them in the room).  And then it was finally over, he entered the world, we got a photo, and he was taken to the NICU.  With the speculation of CHARGE coming up just 5 days prior, we were looking for physical features of the syndrome immediately.  He was only hours old and the doctors were filing in to represent every organ system.  The news just got worse and worse…

"His sight is compromised by coloboma’s, his hearing is not normal, he has a hernia, his heart cannot function on its’ own without surgery, his nose is blocked and we’re not sure than we can operate, he has one kidney and we aren’t sure if it’s functioning 100%, he may have some brain “leaking” into his nasal cavity, we aren’t sure if his body is making the right hormones, and so on.”

I felt like we were being attacked, I couldn’t remember who said what and got so lost in all the terminology. I sat and wished so hard to just be sitting there holding Dallas and having the biggest stress be too many visitors.  But that wish evaporated every time a new person would come into the room….they started out every time by saying “Have you heard of CH….and I’d interrupt and say, “Yes, we know about CHARGE.” 

Fast forward one year and we can easily see that Dallas is every bit perfect for our family.  He’s an incredibly special boy and he warms hearts. J  So, stop by if you need your heart warmed up!!

Today is a day to celebrate all the good that has come Dallas’s way.  He makes us believe in miracles and teaches us to be happy.  He has been through a lot during his first year and with pink eye and an ear infection out of the way already this week, we are hoping he has a truly HAPPY Birthday.

The link below is to a slideshow that captures a picture journey of his first year.  You may need to download a recommended player to view the show depending on your computer.  Enjoy!

http://www.photodex.com/share/bauerjackie/apcg9mg4

We are celebrating his birthday tonight with family and will post some pictures and report back soon!

After two rounds of the flu for Dallas, we finally made it to his neurology appointment.  The neurologist does not believe that his 2 seizures were febrile ones.  He is calling them generalized seizures....which I think pretty much means completely undefined!!!  Because the seizures were so different and we are not able to give exact information regarding them given the state of panic we were in, it is hard to identify exactly what type of seizure each one was.  The chances of Dallas having another one are 50%.  We held off on starting an anti-seizure medication, but that will be the course of action should he have another one.  The more time that goes by without a seizure, the better for Dallas (and for us!).  The neurologist thinks that given Dallas's developmental delay (due to CHARGE), and Dandy-Walker variant, Dallas is a perfect candidate for seizures.  For now, we just wait and see.  He did give us an emergency stop seizure medication to give Dallas should he have another one.

Our biggest focus right now is eating.  He had another swallow study done and he did not pass.  He still cannot swallow thin liquids, which was a disappointment as we thought by now he may have outgrown it.  They are looking more into potential reasons "why" his swallow is not coming, just to make sure there isn't something that can be done surgically.  It is most likely due to the anomalies affecting his cranial nerves that impact his ability to swallow.  He does have airway issues that also contribute.  We are also attempting to get him eating mashed up table food, baby puffs, cheetos, anything besides pureed, chunk-free baby food!  We are having some luck, but not much.  This is definitely a marathon, not a race.  He has tolerated some changes very well, such as eating food at room temp versus very warm.  This helps with feeding on the go.

The second biggest focus is his low muscle tone.  Still working on sitting.  This has taken months and it can get very discouraging at times.  I told him we have to be sitting independently to open presents at his birthday party!  Only about 2-weeks left.

Dallas amazes us and makes our hearts grow bigger everyday.  He is truly a joy in every way.

His big sister will be turning "3" on May 28th, and we celebrated her birthday yesterday!

Seizure #2

Yes, another seizure.  We thought this would never happen again, let alone 3 weeks after the first one.  This time was different......

Two days ago, we got up and started the day with a Target run.  Got home around 10am and Dallas just wasn't himself, but then again, he hadn't been himself for a couple of days now.  I gave him Tylenol and blamed his fussiness on his new teeth coming in.  We had an appointment scheduled at the U of M to discuss the MRI results and what it meant for cochlear implants.  My mom rode with me to the appointment for a second set of ears, and what else would you rather do on your day off!  Dallas slept through most of the time we spent at the U, and we headed home about 3:30.  He was so crabby on the ride, I thought we should stop in Inver Grove Heights and get him some Motrin ( I don't carry this with me, since he is not supposed to have it).  We had just parked in the lot when he started shrieking so loud, I immediately knew something bad was going to happen.  Just then he started convulsing, we both flew out of the car and got him out of his car seat.  My mom saw him first and said his color remained good while it was happening.  The seizure itself lasted about a minute, then a few more minutes for him to regain eye contact and start to cry.  We followed MOST of the directions on what to do should this happen, but I did panic and call 911.  After a few hours in the ER, they ruled out pneumonia, RSV, or other bacterial infections and sent us on our way with a directive to follow-up with a neurologist.  So, that is that.  I've made the calls and we are just waiting to hear back on whom to follow-up with.

The MRI results do show signs of Dandy-Walker, not the total syndrome, but a variant of it.  We were previously lead to believe that this was not the case, so this news was highly disappointing.  It wasn't a focus before, but the seizures have my wheels spinning...burning rubber in fact.  More on this later.

The MRI also gave the ENT surgeon a better idea on which ear to go after first relative to the cochlear implant.  We have decided to go ahead with it, and the surgery is currently being scheduled.  It will take 2-3 months to get the OR time, so meanwhile I am going to Mayo for a second opinion.  This is a big deal.  Even if everything goes well during surgery and he is able to implant every electrode, there is still a chance that Dallas's nerves will not respond, etc, etc.  It's going to be a long road and there are great risks, but we feel the benefits outweigh the risks and we're praying for miracles.

The plan is ever changing and we'll see how the neurology piece plays out over the next couple of weeks.  Meanwhile, the D-man has been having some fun....see below!

Laundry Basket Ride Anyone?

Cheeseball!

I love Easter!

First Haircut, the "before" picture.

After!  Holy Handsome. :)

Another one down

Dallas is home and has made it through yet another surgery.  I know I say this all the time, and I am bias, but this kid is amazing.  He was exceptionally good yesterday and last night, he just goes with it. He's our Rockstar, yes with a capital "R."

The ENT surgeon (Rimell) did a thorough exam and noted his nose was wide open, and ear tubes were clean and in place well.  So, he virtually did nothing surgically!  Great news. Also, he reviewed the CT scan which was completed to help determine success rate of potential cochlear implants.  The MRI is still needed to confirm cranial nerve exsistence, while the test is done, Rimell has not yet reviewed it. He expressed his concern, again,  given Dallas's anomolies, but also noted that Dallas has positvely surprised him already and wouldn't count anything out.  He admitted that he never thought Dallas would get by without a trachestomy and look at him now....

The urologist was able to complete the right and left orchiopexy with some difficulty, but all went good and he was able to do it all in one surgery - big blessing there.  He made 3 small incisions and 2 BIG incisions, ouch!  Let's just say that I nearly passed out when they first removed his diaper to discuss care.  He did give us some Tylenol with codeine though, which really seems to be working for Dallas. 

On a completely different note, Scott and I attended a seminar last week that was intended for parents who had a child that was both visually and hearing impaired.  We learned a great deal and met some wonderful parents as well. 

Morning of Surgery

Waiting to be taken away!

Hangin' with my keeper (she looks real happy!)

First Stroller Ride with no car seat - I feel free!

Who says you can't sleep through a bath!

Naps are for SISSIES!