Boys Town Appointments Update...

Yesterday was a day full of appointments for Briggs at Boys Town and everything went really well. We started out the day with the 2 implant appointments. The first was the "device orientation" appointment. We were shown the three different styles and brands of implants and have to decide which one we would like to go with. It sounds like a simple process but is actually VERY difficult. These implants will be with him for the rest of his life so we're trying to figure out what is the best for him and will fit all his needs throughout his life. They all serve the same purpose but are very different styles. Each implant has something unique and we wish we could combine them all to create the perfect implant. So I think I'm going to get in touch with other families to see what experience they've had, talk with his speech pathologist (she works with cochlear implant kids) to get her thoughts and we'll continue to do research before we make a decision. We don't have to make a decision until he's 7 or 8 months old (which is only 3 or 4 months away).
After that appointment we had the "expectations discussion". It was a little nerve racking because you're having a discussion/interview with a counselor about how we're doing with the news of his hearing loss, realistic expectations of what it will be like after his implants, what our expectations are for Briggs, what we're currently doing for him (having him wear his hearing aids every day and working with LPS are 2 examples). All of these factors are taken into consideration before they approve him as a candidate for the surgery. This we didn't know but the counselor told us that next Wednesday the implant team will all sit down and discuss Briggs case and our appointments and decide whether Briggs is a candidate for the implants. So later next week we will get a call from them letting us know what their decision is. Please pray they will approve him for the implants!
Then we met with Dr. Lusk and he talked with us about our appointments with the implant team and checked his ears for fluid. There was no fluid which is great! In case you forgot from previous posts... Dr. Lusk does all the pediatric implants at Boys Town so he will be doing his surgery. The surgery date is dependent upon insurance approval. He said most times insurance will not approve the surgery until they are a year old (I think for anesthesia purposes - there is less risk to put them under once they turn 1). However if the insurance company approves the surgery at 10 months old then Briggs will have the surgery at 10 months. We most likely will have to put him through 2 surgeries. His first implant will be between 10 months and 1 year of age and the second one will be approximately 3 weeks later. The reason is it's to risky to keeps babies under anesthesia for the length of time it would take to do both at the same time. We took the genetic results for Briggs and Dr. Lusk took a look at it and his comment was... "ahh connexin 26 - he's going to do fantastic with these implants". He actually said that many times in the appointment. That was very encouraging news for us! We met a family one of the first times we were at Boys Town before we knew the genetic results and the little girl we met who was also born with profound hearing loss and has connexin 26 (same exact situation as Briggs) is now 6 years old and has done phenomenal with the implants! You'd never know she was born deaf. Truly amazing!! Dr. Lusk also said that 1 year of age to 1 1/2 is the magic number for the success of the implants. It's because babies learn to hear sound naturally once they're implanted and they don't miss out on very much time of hearing sound. Of course older kids and adults can do just as well too. Alot of factors are dependent on how well a person does with an implant.
Nick and I are so grateful for the newborn hearing screening and feel blessed that we have come so far in only a few months! They all were amazed at how visual Briggs is. He does not skip a beat! Every time we went into a new room he checked everything out and kept his eyes on the audiologist, doctor and counselor and also gave LOT'S of his handsome smiles! It was a great day of appointments and we are 3 steps closer to giving Briggs a hearing world!!
What's to come... we're waiting for the team to meet and approve Briggs for the implants. As soon as I get that call I'll post an update. September 8th we have his 4 month check up. September 9th we have his LPS teaching session and Sept. 10th we have the genetics clinic back at Boys Town. Until next time...

Briggs Hearing Update

Yesterday we met and had our first meeting with the LPS (Lincoln Public Schools) team who will be working with Briggs and it went really well! I didn't cry!!! There will be a Speech Pathologist and an LPS teacher who works specifically with children who have hearing loss coming to our house every other week to work with Briggs and Nick and I. The teacher walked in and went right up to Briggs and started talking and signing to him and I do have to say that at that moment everything kind of hit home for me. That is the first time anyone has signed to him - well I think Nick has a little too but I haven't seen that. I really don't know how to explain my feelings. It almost is a surreal time for me. I guess the hardest part for me is all the unknowns. I almost feel helpless for him (which bothers me so much) because we really have no idea what is best for him or what we should be doing and in a situation like this we want to do the best for him. We have ALL these appointments and I never know what to expect so I'm very nervous before them. I'm also emotional when it comes to stuff like this so I usually cry when we have new appointments. I'm so glad Nick is always there. Anyway... the home visits with the Speech Pathologist and Teacher will increase as he gets older but for now there isn't a whole lot we can do - play peek a boo, use a lot of facial expressions, ect. One thing we REALLY have to work on is keeping his hearing aid in for longer periods of time. The minute we put it in it falls out and he loves to pull on his ears so he pulls it out and his little ears don't hold it well. Keeping it in isn't the easiest BUT we are just going to have to get used to putting it back in. The audiologist yesterday explained it as the more hours he wears it the more the auditory nerve will be stimulated, and the more we'll be able to tell if he's responding to certain sounds. Basically how I understood it was, if you lift a 10lb. weight twice a day you won't get good results but if you lift it 50 times a day you'll see results. I want to say how thankful Nick and I for all the resources that are available to us. So far LPS has been absolutely wonderful and we are so fortunate to have these services for Briggs! You feel so lost with no direction and I felt so relieved and not alone after yesterdays appointment. They have families who we can get in touch with who are going through the same thing and I'm excited for that. So what's to come... next Wednesday, August 27th we spend the day at Boys Town where we have 2 appointments for his implants, an appointment with the doctor, and then with the audiologist. Monday, September 8th we have his 4 month check up. Tuesday, September 9th the LPS team comes to our house for the first "teaching" visit and Wednesday, September 10th we go back to Boys Town for the genetics clinic. I'll keep everyone updated!!

Elli

You know I got to thinking a little (imagine that) and I wanted to comment on how well Elli has adjusted to having her new brother. She used to be a huge momma's girl but of course once Briggs came my attention had to be shared and she's always loved being with her dad too but now she's becoming more of a daddy's girl and it so much fun for me to sit back and watch them together. Elli LOVES riding in daddy's truck, helping him outside, snuggling up with him on the couch to watch movies, and help him cook. I have the clearest memories of being with my dad when I was her age so I guess it takes me back in time a little. Elli is a great help with Briggs but also knows what she can and can't do with him. She never asked if we could give him back and never gets annoyed if he's crying or being a stinker. She's such a great kid!!! Oh yes and she started riding a bike this summer.

Briggs Rolled Over!! 3 months old

We have a few firsts already for our little man... last night he rolled over twice from tummy to back!! It was a pretty exciting time for us! He's been sleeping through the night and goes to bed between 9 and 10 and wakes around 5 to eat. Of course there are nights where he misses me so he wakes up a little earlier (between 2 and 3) but he always goes right back to sleep. He's such a good little guy!! Briggs is also sitting up like a big boy in his Bumbo chair. We can't believe how fast he's growing! Oh and one last thing... Briggs LOVES watching t.v. The picture where I'm kissing his cheek... he's trying to look around me at the t.v.

Briggs Hearing Update...

You all should now be in the know about Briggs hearing but in case you're not, here is a brief recap... Briggs failed his newborn hearing screening at the hospital. We had it tested again at his Pediatrician's office and he failed again. We were referred to Boys Town Hospital (they are a nationally recognized hospital for hearing) where Briggs was diagnosed with Bilateral Profound Hearing Loss. Briggs will be getting cochlear implants between 10 months of age and 1 year as long as he's a candidate. If you haven't heard of the implants, google it... they are AMAZING! The cochlear implant is a complex electronic device that can compensate for non-functioning parts of the inner ear. The implant procedure involves surgery to insert the device under the skin behind the ear. Electrodes are attached, providing a direct pathway to the cochlea within the inner ear. When the implant detects sound, impulses are sent through the auditory nerve to the brain, creating an effect similar to hearing. While the implant does not completely restore hearing, most recipients find that they are able to receive significant auditory clues, enabling them to speak and understand oral communication. They make a non hearing person hear - BUT the individual has to work very hard for 2-5 years at least to benefit from the implants. As with anything everyone has different outcomes. Babies benefit from the implants significantly more because they learn to hear sounds naturally as opposed to an adolescent, teenager or adult who has to "learn" all the noises around them. Briggs was fitted for a hearing aid and we have to watch to see if he responds to noises with it. He will wear that until his implant surgery. We found out through some basic genetic testing that Nick and I both carry a recessive gene which caused his hearing loss. The genetic condition is called Connexin 26 and is the most common condition of hearing loss in babies. Our kids have a 25% chance of getting a flawed gene from Nick and I which causes the hearing loss. Connexin 26 is the best case scenario for the cause of his hearing loss so we are comforted by that. We have come a VERY long way in only 3 months! Our next round of appointments is August 27th. We start with the "device orientation" - where we look at the different brands of implants and choose which one we want to go with, then we have the "expectations discussion" - which tells Nick and I what is expected of us following his surgery. Briggs will need ALOT of speech therapy. Then we meet with his pediatric ENT to check the fluid in his ears and then we meet with his audiologist. September 10th we go back for the genetics appointment. We know the basics but this appointment will give us all the details. This has been an emotional roller coaster. Lot's of tears but Briggs is an amazing little guy and we have no doubts that he will do great with all of this! I created this blog so that I could send you all updates as we continue through this journey. I will post after appointments and keep you all up to date on Briggs and Elli.

Welcome Briggs!!!

Hello Everyone! We are excited to announce the arrival of Briggs Allen, born May 6th, weighing 7lbs. 12ozs. and 20 1/4 inches long. Labor and delivery was only 3 1/2 hours compared to my 36 hours with little Elli bell! Briggs is already 3 months old and weighing over 13 lbs. and over 24 inches long! He's a growing boy! He's extremely laid back and easy going. He's smiling, giggling and LOVES to sit up and watch everything going on around him. Elli adjusted perfectly and adores her baby brother and can't be more proud of her new role as a BIG sister! She's already saying she wants another brother. We'll see how long this lasts once she has to start sharing toys! Elli took some swimming lessons this summer and did well considering her shy side with strangers. Other than that she's been to the zoo's and parks and movies and lot's of play dates and trips to the swimming pool. She's been a busy girl too and had a fun summer. She's learned her ABC's and has been writing her name since Feb. Elli is a smart little whipper and has an unbelievable memory. We cherish every second of our kids! Parenting is truly amazing!