Crawling!

I had to share this, Dallas crawled a few strides all by himself today!!!  It's a start, we are so excited!

http://youtu.be/ajXPNCn8d1U

There have been lots of little things keeping us busy with Dallas over the past few weeks.  We have been emerging from "baby" stuff, to "big boy" stuff. :)  I can't think of a better way to put it, but it feels like our planning has changed from day to day, to looking ahead a little more and deciding what things currently in our schedule are working and which are not.

We are starting PT at Children's 2x/week, beginning this week for 4 weeks total.  Dallas has been on the brink of crawling and getting himself sitting/standing for quite some time now and we decided to increase the therapy short-term and see if it will help get him over the hump.  Also on the line of PT, Dallas was fitted for ankle orthotics last week.  He will get them on in about a week or so to help stabilize his ankles.

From a developmental standpoint we have started to think more about potential play groups or learning environments that might be good for Dallas to start getting used to.  I have met with a school, "Northern Voices," located in Roseville.  This school only has kids there with a hearing loss.  Most of them have cochlear implants and some have hearing aids.  This is an expensive school and the focus is oral communication.  Dallas could start there as soon as he is walking.  They have programs ranging from infant/toddler to Kindergarten.  We are starting a 6-week trial this Friday, to get an idea if this is a school we would consider for him.  It's all about finding the right fit for Dallas and for us.  There are other options that are less focused on oral communication, but also come at no cost and provide special help for Dallas in hearing, playing, communicating, and learning social skills.  We aren't making any decisions right now, just getting a feel for the different options.

Dallas is done with feeding therapy for now.  He is chewing many things and we continue to work at home on eating/drinking skills, but he does not need to be seen in clinic!  We have decided to hold off on the VitalStim Therapy for now.  Again, this therapy is aggressive (3x/week) and would possibly help Dallas get a better swallow so that his liquids would not have to be thickened.  We have decided that we will let him get his bearings with chewing before we introduce another therapy.  This type of therapy doesn't fit into our schedule right now either.

About 3 weeks ago, Dallas had his first successful testing done in the sound booth.  Previously, he did not respond well in this environment and had no solid documentation relative to what level his hearing was at.  NOW, he is recorded as having only a mild hearing loss in his right ear (the side with the implant).  This was an incredibly exciting day and also gave the audiologist what she needed to make a mapping adjustment to his sound levels.  We can now consider the implant a "success."  These tests do not tell us that Dallas will or won't talk.  We only know that he is hearing.  What his brain does with the information, is unpredictable and only time will tell. 

Cochlear Implant #2 will take place on Monday, March 5th.  We met with the surgeon and his outlook on the success rate is 50/50.  We do not know if the auditory nerve on the left side is viable.  The MRI and CT scan describe it as "severely hypoplastic," which means "not well formed."  Why are we doing the surgery then?  Because the surgeon believes that an MRI is not something to hang your hat on.  He has done surgeries where things have been different "inside" versus on an MRI or CT scan.  We are taking a chance and hoping that Dallas can get some hearing on the left side as studies have shown that having bilateral implants makes a significant difference. 

Finally,  Scott and I have started sign language classes again and we are also having someone come into the home once a week to provide further sign language instruction.  We want to learn as much as we can and start incorporating sign into our everyday life.  Even if Dallas becomes "oral," knowing sign language will be a wonderful second language and be essential as we interact with other families in the future.




This was their idea of sitting together for a picture.



Dallas has been making great strides over the past month.  The most unbelievable stride has been with his eating.  About a week and a half ago, he picked up some broken up muffin from his tray and actually put it in his mouth, chewed it up, and swallowed it.  It may sound like a small task, but this was an amazing feat for Dallas.  Since that morning, he has taken off with other foods too.  He continues to impress and surprise us every day.  He has been eating muffins (his favorite), hot dogs, pancakes, toast, bread with peanut butter, scrambled eggs, spaghettio's, ravioli, diced peaches, bologna, and cheese.  I had an ear to ear grin all last week as I kept challenging him and trying new foods all week.  I could hardly wait to get to feeding therapy on Friday and show Dallas's therapist his drastic turnaround since the week before.  She could not believe it and said that he had shattered his 60 day goals!  She said she would have to write new goals and was excited to report on his progress.  I left that appointment and cried.  I was so happy and proud of him.  It was just like a light switch went off in his brain, and he just took off.  With all that being said, there are still foods such as crackers, cereal, cheetos, puffs, etc., that he has no interest in chewing. He has also been a notorious vegtable guy, so we are hoping he will like them in "chewable" form as much as he did pureed.  We are also going to work hard to transition him from a bottle to sippy cup.  We have been introducing it for several months and maybe it'll be like the chewing and when he is ready, he will use the skills he's learned and just take off.  He is drinking from a straw here and there, so that is good start.

The last 3 weeks or so, Dallas has had a lack of interest in the physical therapy arena.  He continues to prefer laying on the floor, almost more than usual.  He still enjoys being walked around, but that is really taking a toll on my back.  In fact, my back went out on Friday...so I have been a bit of a cripple this weekend.  I saw a chiropractor and need to make a few changes to keep my back in working order! Anyway, they say kids usually make strides in one area at a time, so I think Dallas is working on his eating and "relaxing" on his physical stuff. :)

We have a busy week ahead including an appointment with Dr. Rimell to discuss doing the cochlear on the LEFT side.  I am anxious to see what he has to say.  We had initially talked about doing it at least a year after the first side, but both his audiologist and speech therapist feel like the sooner the better.  We know Dallas is hearing on the RIGHT side and he continues to respond well every week to all the LING sounds.  He really does enjoy listening and the best case scenario would be to have that success on both sides.  We'll see what the surgeon thinks!





Discovering the iPad



Playing cards



Dallas with his "walking wings," and moms "back savers!"



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.