Thursday, January 24, 2013

3 month update

SURGERY UPDATE: Hattie's surgery has been changed to this Tuesday, January 29th.

It has been (almost) 3 months since Hattie's implant was activated.  Time has gone by very fast and there have been lots of fun changes!  Hattie turned 1 over the holidays and started walking.  I feel like we went from raising a baby to a toddler in a matter of days.



Hattie is doing great with listening and hearing.  Everyday, it seems, she is able to understand more and more of what we say to her.  She is understanding a lot of basic phrases: "where is your blanket", "where is your belly button", "say bye-bye", etc.

The biggest, and most exciting, progress is that she has started saying "Dada" with comprehension!  It started with babbling "dadadada" that turned into "dada" that turned into her saying "Dada" when looking at Kevin or pointing to him.  Even though she is still working on saying it consistently, I am counting this as her first word :)  I'm so proud and thankful for Hattie's progress and the support we have received from her doctor, audiologist, auditory verbal therapist and, of course, family and friends.  I tried to catch her saying "dada" on video.  It isn't as clear as I would like, but the best I could do ;)

video


Next up for Hattie is surgery for her second implant.  Surgery is scheduled for next Friday, February 1st.  We are laying low right now to keep germs at bay, hopeful that Hattie (and all of us, for that matter) will stay healthy.  We are ready to progress with surgery and have it behind us, so we can completely focus on her therapy.

We ask for prayers for our Hattie girl and the doctors and staff that will be in the OR during her surgery.  We will keep you all updated on Hattie's surgery and recovery.  Thank you for the prayers and love you all continue to bestow on our family; we are truly thankful and blessed.

Wednesday, December 12, 2012

6 week update

It has been 6 weeks since Hattie has entered into the world of hearing.  This has been, and continues to be an amazing process!  Cochlear implants are a miracle from God using modern medicine.  Even on days that I am exhausted from talking and narrating the most mundane daily tasks to her, I must remember the gift of hearing that God has given our daughter.  

"I will praise you, O Lord, with all my heart; I will tell of all your wonders.  I will be glad and rejoice in you; I will sing praise to your name, O Most High." Psalm 9:1

Hattie has been making great progress.  At our last audiology appointment she was responding to sound as low as 25dB in the sound booth.  This is amazing, as her residual hearing was as loud as 105-110dB before surgery.  Most of us, with normal hearing, cannot even begin to imagine what a change like that would be like.  She has handled this new change really well.  The smile I get every morning when I put her implant on is priceless!

Another great improvement has been the ability for Hattie to recognize and differentiate sounds associated to different toys that we play with.  One of our daily therapy activities includes me asking her to pick out a different toy by asking for it by name and then making the sound associated with that toy.  For example, "Hattie, where is your car?  Beep beep."  I have been trying to catch some of this on camera, but once my phone comes out she is a lot more interested in that than what we are doing :)  I was able to get this video the other day, however.  Now, before you watch it, bear with me...I am going to be a bragging mom for a second.  In the video I asked Hattie to find her train.  I was waiting for her to pick out her train toy that was laying in front of us.  However, my little smarty pants turned around and picked out her train book that we read over and over and over.  I felt like that was such a smart thing to do because we do not focus on that book when playing with her therapy toys, and she remembered that her train, or "choo choo" was in that book.

video

And one more video just for fun.  Last Thursday we started playing the "how big is Hattie" game.  I took this video on Saturday!  


video

I will completely admit that I think my child is very smart, but what mom doesn't :)  However, my main reason in showing these videos is to give you an idea of what we work on and to see how fast their little baby brains absorb new information.  Hattie's progress is just another reason why it is so important to have the newborn hearing screenings when a baby is born and how important early intervention is.  We are so thankful and blessed to have been able to provide Hattie with the best care possible as early as possible. 

Sunday, November 4, 2012

Activation update

Wanted to give a quick update on Hattie, as we have had a lot of people asking how she is doing.  As I stated in the previous post, after activation of her processor, it can take a couple months before she is at a hearing level that is appropriate for her.  Our Audiologist programs her processors and then gives me extra "programs" to go through in between appointments.  This means that as I move her to the next program her processor is slowly being turned up.

Because Hattie was able to hear with her hearing aids (limitedly), she is already familiar with sound and this has not been such a shock to her.  Consequently, we have moved through her first 4 programs very quickly.  I was able to see our Audiologist later in the week and she gave us 4 more programs to work through.  Today we are on the last program again.

When I am turning Hattie's processor up, the main thing I want to watch for is that she is not becoming upset and crying.  As long as she is handling each program well and I feel like she is not progressing anymore then it is okay to move forward with the next program.



Hattie has been turning to loud sounds, primarily coming from a toy, but is not consistently turning to me or Kevin's voice yet.  At first I was feeling really discouraged because I was looking for instant gratification with her implant.  As I have learned through this whole journey, and am continuing to learn, I need to continue to have patience.

I have been keeping track, daily, with what program we are on and any changes Hattie is making.  An exciting change I noticed was that by Friday (3 days post activation), Hattie had begun to experiment with new sounds.  This is a very exciting development and great reassurance that the implant was the right choice for her.

Hattie has always been very vocal and enjoyed playing with the intonation of her voice.  But, even still, she mainly would only say different variations of "ahh" and "eee".  At 10 months old she should have been babbling for awhile, saying "ba", "da", "ga", "ma" etc.  Well, on Friday I noticed that she is starting to experiment with saying all those things!  I couldn't believe it, because I was feeling like she wasn't hearing anything yet and clearly she has been, even if it is still quiet to her.  This is also very exciting to think that if she is already making this kind of progress now, what will she be doing once her processor is turned up to an appropriate level for her!

I will continue to update everyone as we have updates.  We are very humbled and blessed that people have taken an interest in Hattie's story.  God promises to always be us and never leave our side and that has been very apparent through this whole journey!

"...Never will I leave you; never will I forsake you."  Hebrews 13:5

Tuesday, October 30, 2012

Hattie's Activation



We want to thank everyone for all your continued prayers for Hattie during surgery and after.  She has recovered really well and doesn't even seem to realize that she had surgery!  

Today was activation, as most of you know, and it went well.  She didn't have a "YouTube moment", but that's why those videos are on YouTube in the first place :)  



Holly, our Audiologist, putting the processor on Hattie



We had prepared ourselves for not much of a response, especially because she has been responding in her hearing aids.  Our Audiologists are very conservative in the beginning as the child is getting used to wearing and hearing from the implant.  Her implant is set very low and will gradually be turned up over the next couple of months.  

If we are honest, we were hoping for a big moment.  But the fact that she didn't have much of a reaction is reassuring that she has been hearing this whole time with her hearing aids; hopefully, we can turn up her implants a little faster because of this.  

We will continue to keep everyone updated on her progress.  Thank you again for all your love and support!






Friday, October 19, 2012

Surgery

It has been almost 2 weeks since Hattie's surgery.  Hard for me to believe!  The surgery went perfectly, our surgeon said that everything went exactly as he had planned.  Total time Hattie was away from us was about 3 hours; I could not get back to recovery fast enough!  When I went back, she was sitting up in her bed, although a little wobbly from anesthesia, playing with all the wires and cords that were hooked up to her.  The nurses couldn't believe how happy she was waking up from surgery :)



Hattie had a Princess Leia-esque head wrap on after surgery.  Our surgeon wanted her head wrap to stay on until Sunday (5 days from surgery).  By Friday morning, she had pulled it off :)  Her incision looked fine, so we didn't have to go back in to get it re-wrapped.  She has really done a great job with leaving her incision alone and has been a tough little lady during recovery.  She has been fussier about her teeth coming in than she has with the surgery!

Hattie is wearing her hearing aid in her left ear still, and will do so until we activate the implant on her right side.  Activation day, for the implant, is October 30th; we are so excited!

We want to thank everyone for all their prayers, support and meals brought to us during this time!  Kevin and I are so thankful for our supportive family and our friends- new and old.  We are so blessed to serve a Heavenly Father that promises to give us peace and tells us to go to Him with all our anxieties and fears.  "Cast all your cares on the Lord and He will sustain you; He will never let the righteous fall." Psalm 55:22

Little black eye after surgery.  Still happy girl :)



Monday, August 27, 2012

Approved!!

I am sorry it has been so long since I have updated our blog.  I really have no good excuse, so I won't try to come up with one :)  We have had a busy summer with moving (twice!) and getting settled into our new home.  We really like North Carolina and have tried to be intentional about exploring the area and seeing what our new city has to offer.  Every Saturday we hit up our local farmers market for fresh, organic produce and end our visit stopping by a gourmet donut stand to reward ourselves for our purchases ;)

We have had lots of visitors lately and still more to come.  We are so thankful to have a house that will accommodate guests and want to keep an open door policy to anyone that would like to visit.

Hattie and Aunt Tay

Kevin has been working a lot and is really enjoying his program.  We have made some great friends through his program already; it has been nice to connect with people down here.  Hattie and I have been getting into a routine with her daily therapy (done by me) and weekly visits from our Auditory Verbal Therapist.  We have also kept busy with doctor's appointments and audiology appointments; however, we do manage to squeeze in some fun too!

Recently we completed our checklist of appointments, if you will, to confirm that Hattie is a candidate for cochlear implants.  Our last hurdle has been insurance.  The FDA approves cochlear implant surgery at 12 months of age.  However, many surgeons are performing the surgery earlier because studies have shown the earlier a child is implanted the better the results and quicker they catch up with their hearing peers.  We are wanting to have surgery done on Hattie right after she turns 9 months old.  We have decided to have one implant placed at a time, with the second implant being placed 3-6 months after her first surgery.  Authorization for the first surgery was sent to our insurance company last week and we have been waiting for the results.  Every insurance company is different on their approach to this surgery and we have been prepared for a denial to be given.

Ever since Hattie was born, we have learned what it means to fully rely on God and trust His plan for her life.  I believe this is true for every parent, but especially those that find themselves faced with a child that has a disability.  We have stopped trying to make sense of her deafness, and instead trust that God has a plan for it in Hattie's future.  We have been blessed to see His hand already in so many decisions we have had to make on her behalf and in her developmental accomplishments thus far.  Our prayer, during this time, has been to give us peace with whatever decision insurance gives us and to put total trust in God.

Well, today I received an email stating that Hattie's surgery has been approved by insurance for the date we have been wanting!  We are ecstatic!  We have been waiting since she was 2 weeks old (when it was confirmed she was deaf) to get to this point.  We are so excited to know that she will be able to hear our voices in a couple months and discover the sounds all around her.

Hattie's first surgery will be on October 9th and activation of the implant (when they will turn it on) will be about 3-4 weeks after.  This will give her enough time to heal from surgery before rocking her world with sound :)  We will definitely film activation day and share the video.  Thank you to everyone that has been praying for Hattie and Kevin and I.  We are so thankful and blessed to have you all in our lives.  Please continue to pray for Hattie and her upcoming surgery.  I promise I will do a better job of posting in here!



Monday, April 30, 2012

Connexin 26 and 30

I know it has been awhile since my last post; we had not had anything new with Hattie's hearing, which is good.  We have been able to increase her hearing aid wearing, so she has them in all day and they only come off when it is time for bed.  Since she has been wearing them more frequently, we have been able to notice more consistent signs she is hearing something.  At this point, all we are looking for is a startle, a change in her eyes, or a cessation of sucking on her pacifier when we are talking to her.  I have been told even hearing babies may not turn and locate sound until about 6 months.  We have been really encouraged with her progress so far.

In March, we saw a Geneticist and decided to have some testing done on Hattie.  Our reason for doing this was simply because hearing loss can be syndromic and a sign there are other issues present.  We felt if that was the case with her, it was best to find out now and be proactive in appropriate therapy.  They told us it could be a couple months to get the results back, so we were very happy to finally receive the call from them last week.  Our prayer this whole time has been that we are dealing with a single genetic defect called "Connexin" and not a syndrome.  

We found out that her hearing loss is genetic, as Hattie has Connexin 26 and 30--meaning she lacks the normal function of a protein which assists in hearing.  We now know this also means Kevin and I are carriers of the mutation and will have a 25% chance of having future children with hearing loss.  We had no known knowledge of this prior to Hattie's diagnosis and do not know of anyone in our family with congenital hearing loss.  Most likely this gene has been passed down through generations, but has not manifested itself until two carriers had a child together.  I've likened it to playing a slot machine where everything has to come together just right for this to show up.  The good news with being Connexin positive is it typically only effects hearing and she, otherwise, is a normal, healthy baby.

We are one month from moving to North Carolina and are getting very excited.  May will be my last month of working as a dental hygienist (at least for a little while).  It is bittersweet, but I am really looking forward to staying home with Hattie and being able to monitor her progress with listening and speaking first hand.  We have an initial appointment scheduled with our new Audiologist and ENT at UNC.  They have a very established system and it seems our transition will be as smooth as possible.  We feel very blessed and humbled with the way God's hand has been involved in our move and setting up care for Hattie.

photo courtesy of babysitter Darcy :)