June has two activated, programmed, working cochlear implants! Her right side was activated a few weeks ago and she is responding well to both implants. While Jonah was participating in an adventure/service project in Hawaii, Chris, June, and I sailed around Mount Desert Island region of Maine in our 31 foot sailboat Ranger. June was quite the crew member, she did amazing! We managed to keep her helper ears dry and in good working condition while living on the boat and sailing to some super cool spots. Check out some pics of the newest Ranger crew member!

It was not easy but June did it! The internal piece of her right helper ear has been implanted. Typically kids June’s age stay in the hospital for 1 night after cochlear implant surgery. June likes to be different, so we stayed for 4 nights! She is doing great now but did require some additional care post surgery. The surgery itself lasted about 7 hours which meant a long time using a breathing tube. Her throat was sore, making eating and drinking uncomfortable. In addition, a substantial amount of blood was lost requiring a blood transfusion a day after surgery.

The team at Boston Children’s watched June carefully over the next few days and responded to her symptoms. She bounced back on Monday, had a great night Monday night and we were clear to go home on Tuesday am.

Thank you to our care team in Boston and all of June’s family and friends who sent positive healing thought and prayers our way. We felt the love and very much appreciate the support. Activation of helper ear #2 is July 13!

It has been quite some time since I’ve updated the blog! June had a great year, making some good progress in all areas and especially with helper ear #1 (the left cochlear implant). I’ve been trying out different names for her CI and these days I’m liking helper ear so let’s go with that for now. She is currently in surgery, getting her right cochlear implant. We spent the week getting the thorough look over from cardiology, hematology and otolaryngology and today is go time! Here are some recent pics of the little warrior, please keep her in your thoughts, prayers, intentions today and send positive healing vibes! I’ll post this weekend and update you all on her recovery. Thanks for thinking of our sweet little girl.

June is now activated! Last Thursday, her cochlear implant was activated! The process of June beginning to hear will take some time as her brain makes sense of the sounds around her. We are not sure yet how much she is hearing or will be able to hear but the journey has begun! She did not cry or seem overly happy when the implant was activated which we think is typical. She did have a little look in her eye that something was different but seemed to play and interact as usual. We will continue to use sign language with her and will see how she progresses with listening, speaking, and signing! As we have learned, she is the driver of this journey, we just take her lead and support her as best we can! She continues to amaze me, just love this little girl so much!

Well today was supposed to be activation of the left cochlear implant but we’ve got a bit of a curveball we are dealing with. June is safe and happy but we have spent the last 6 days back at Boston Children’s as she had to have a hematoma removed from close to the implant site. June’s weird blood actin’ up again!

On Saturday she went back to the OR to have the hematoma removed. They went in the same incision site and removed it. Luckily it was not on the cochlear implant so the implant should still work ok. The hematoma formed just under her skin just above her ear which is a better scenario than on or close to the implant. They put a drain in to make sure any excess blood has a way of getting out of there. The drain was in for 3 days and removed yesterday.

Now back to recovery mode and once the swelling and tenderness is down we’ll try for activation. Tentative date is August 27th. In terms of the right ear, we may have to wait awhile till we go ahead with that one. Poor girl has been through quite a bit and we need to get back on the eating/getting strong train instead of putting her through another surgery. We also need a solid plan from the hematology team before/if we proceed to the next ear. We already knew this but are reminded how tough and special this little girl is! She is not like every other case but instead directs her own path. We have to observe and follow her lead at times! Some things we’ve learned in the last hospital stay… statues scare the crap out of June and she is totally grasping sign language and did her first real expressive sign (signed “baby” when reading a favorite book)!

We are getting discharged today! Until next time BCH…

June had cochlear implant surgery on August 6th! We had been preparing for this all year – getting all the boxes checked and the day finally arrived. We went into Boston Children’s Tuesday and Wednesday for pre-op visits and then it was go time early Thursday am! While we were scheduled for bilateral cochlear implant surgery, the surgeon was able to safely implant 1 side -the left side. June likes to throw some whammies and did so during surgery. She bled more than normal making it difficult to navigate the pathway to put the implant in her head. It took 5 hours, platelet transfusions, and tedious work to place the left implant. We got the call in the afternoon about the complications and were happy that she was safe and that the dr. took the more conservative route to ensure her safety. They tested the implant and the responses to the computer were good… promising news that the implant will work for June! Activation is scheduled for August 18th!

Unfortunately, recovery has been kinda hard with additional bleeding issues, but she is doing ok. We are still recovering at BCH, hopefully heading out of here tomorrow. Again though, happy that we are in great hands here at the #1 Children’s Hospital, the dr.’s and nurses here are quite amazing. It is a little daunting to think that she will have to go through all this again in September when they hope to be able to implant the right side but for now, Junie B is going to hear out of her left ear soon. One ear at a time says Junie B!

Hello from Big Sky!  It has been awhile since we added anything new the blog so we thought we’d give a little Junie B update!  The big news is she got her hearing aids programmed and put on yesterday. She is doing a 3 month hearing aid trial to see if she benefits from amplification.  Her hearing tests in Boston this past fall indicated profound hearing loss in both ears so it is likely hearing aids won’t make a difference but we are going to try!  I’m learning that it is best practice to do a hearing aid trial and if nothing else it gets her used to wearing a device on her ears and it also stimulates the auditory nerve.  After this trial, we will have more information about her candidacy for cochlear implant surgery. What is a cochlear implant you might ask? Here is some good info:

https://www3.gallaudet.edu/clerc-center/our-resources/cochlear-implant-education-center/navigating-a-forest-of-information/what-is-a-cochlear-implant.html

That being said, COVID-19 might affect the timing of all of this but we will just wait and see.  We were supposed to travel to Boston Children’s next week for some additional hearing screenings, meet the cochlear implant team, as well as catch up with June’s cardiologist and hematologist.  The trip has been postponed so in the meantime our specialty docs here in Bozeman are communicating with the Boston teams as we hunker down, try to stay healthy, and do our part with socially distancing!

In terms of day to day life with June, she is one amazing little kiddo!  She is a pretty chill baby and has been quite go-with-the flow this winter.  We’ve had her out in the Chariot a bunch on cross country ski adventures and winter hikes in the baby Bjorn.  She loves being outside and sports some killer sunglasses since she’s got some amazing (and sensitive) pale blue eyes.  That sun and snow combo can be a lot on the peepers! We’ve recently discovered a possible milk protein allergy that may account for the difficulty in keeping milk down.  Now that she is on some very broken down, lactose free formula, she is able to keep her bottles down much better… this was huge!!! Hopefully she’ll be able to put on some pounds at a quicker rate now.  She is getting a lot of services to help her catch up a bit (OT, PT, Speech, and consults with The Montana School for the Deaf and Family Outreach). She giggles, smiles, snuggles, rolls, loves pee-a-boo, almost sits up, and is overall a calm little sweetheart!

Thought I’d send a quick holiday update! June had a great 1st Christmas! We spent the holidays here in Big Sky, going on some snowy hikes and getting into our groove. She is smiling more, laughing a bit, and overall seems more comfortable, yay!

June started OT and PT last month and is getting stronger each week (and there is less crying in her sessions). She continues to get monthly blood draws and all is looking good so far! We’ve transitioned to some specialists out here in Bozeman/Big Sky and everyone has been excellent so far.

We have a great lady doing home visits from the Montana School for the Deaf and she is helping us navigate the next steps for June’s audiology plan! We’ll keep you posted!

We have some family visits planned at the end of January, we are so excited for some cousin/aunt/uncle time!

We have made it home! June got cleared from her Boston doctors and we hopped a flight on Wednesday to Big Sky! She did amazing on the flight and seems to be enjoying her home in the mountains. Before we left, June saw her Boston cardiologist, hematologist, and audiologist and they are all still going to be monitoring her from afar which is great. We are seeing a pediatric cardiologist who makes Bozeman visits and is connected to Seattle Children’s hospital. He will communicate with Dr. Kane in Boston and keep him updated on June’s continued recovery and how her heart is functioning.

In terms of blood, June will have her blood drawn once a month here (hopefully right in Big Sky) and the results will be sent to her hematologist Dr. Pollard from Dana Farber – The Jimmy Fund in Boston. She will continue to monitor her counts, look for trends, and hopefully she will not need any treatment (fingers crossed!)

And last but not least, we met with audiology and are tentatively scheduling June to get cochlear implants next summer in Boston. June is profoundly deaf in both ears and we’d like to give her the opportunity to have some hearing and use spoken language as her communication system. Right now she benefits from ASL (American Sign Language) as she is not able to access any auditory information. We are just beginning this process but we’ll keep you posted on what signs we are using with June so when you see her you can use them! It will be quite simple in the beginning, baby signs, but it will be important to establish a communication base for her. Right now we just smile a lot at each other and try to make some good eye contact and silly faces : ) She smiles more often these days and it is so freakin’ adorable!!!

June got discharged on Thursday night and we are settling back into our routine at the Adams house in Kennebunk. She continues to heal, her incision and chest tube sites are looking good. There are times during the day that she seems to be in a bit uncomfortable but a regular Tylenol regimen is helping. That is normal and should subside soon. So June is doing a lot of chillaxing during recovery time!

We have a check up with her cardiologist in Boston late this coming week and then hope to head home to Big Sky soon after that! We love Maine but it will be so nice to finally bring June home!