A lot on my Mind...

Today has been quite the day.... quite the week for that matter and it is only Tuesday. (at least I got to watch Idol tonight!) Tim is on nights, my kids are out of control and I am just plain exhausted with a full week ahead.

I met with a woman today from an Organization called, Beginnings. When you have a child diagnosed with hearing loss, Beginnings comes out to talk you through all the different things you need to learn about; from how hearing loss occurs, recommendations and setting up speech therapy. It was a 2 hour appointment and could have gone longer if I had wanted it to. I have a dvd to watch and tons of information to read and digest. I feel like I am back in college!

Anyway, I feel a little overwhelmed at the minute, so if I break down crying next time you see me you will know why. Tim and I are also strongly considering going to Chapel Hill for Natalie’s treatments instead of having them done here in Charlotte. They are top notch up there. The downside, is driving... (3 hour drive one-way) for ALL appointments including audiology. I talked to the pediatric audiologist on the phone from there who is also the director of all the audiologists and she has been referred to by some as an “audiological God.” They have a team that does all the testing and audiology side of things before implants and then after implants, a team that only does pediatric cochlear audiology, so it is so much more specific. We have an appointment up there the middle of June to meet the ENT and tour the facility and look at how their program runs. Yes, it is a PROGRAM...

Also, by going there, we may qualify for some funding to help with her $4000 + hearing aids which we are under the impression our ENT office doesn’t participate in that funding program.

Sigh...

But, I wanted to share this beautiful poem/story the woman from Beginnings left with me. It is best used to describe what it feels like to have a child with a disability. It is called Welcome To Holland.

Welcome To Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondola in Venice. You may learn some handy phrases in Italian. It’s all very, exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that the haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

COMMENTS:

laura

I liked that poem.  You are so strong and such a good mother.  I think it would be hard to drive three hours each way for appointments with three kids to boot, but it does sound like and awesome place.  I hope that you get help paying for those hearing aids.  You are going through so much... it is ok to cry.

Wednesday, May 19, 2010 - 08:34 AM

Becca Ford

That is just beautiful! What a comforting story to help us realize that sometimes thing don't turn out as planned, but that Heavenly Father has a very special journey for each of us. I've had this lesson reinforced many times lately. You are another wonderful example to follow!!!

Wednesday, May 19, 2010 - 01:47 PM

Nana

Oh Melissa - I am sorry you cannot go to Italy - but Holland will be a wonderful place, and don't forget you have all of your family and friends to explore this whole new experience with you!  We will do our best to help out!  My love to you and little Natalie and the rest of your gang!

Wednesday, May 19, 2010 - 09:17 PM

Natalie - 2 Months

Natalie had her 2 months check-up yesterday. She will be officially 2 months on Sunday. She got lots of shots and wasn’t a happy girl the rest of the day. 

Here are her stats:

Weight: 11 lbs 8 oz. (87%)

Height: 21 1/2 inches (39%)

2 months have flown by quickly. It has been a lot of work with 3 kids. The nice part is Natalie is sleeping well at night. If I didn’t have that sleep I am not quite sure I could handle it all. 

At 2 months, Natalie can hold her head up really well. She is probably my strongest baby. She is starting to smile more and make lots of cute baby sounds. She is very alert and loves to watch everything around her. I have started getting more toys out for her to see and play with. 

Next week our speech therapist will come out and meet us. We will have weekly 1 hour appointments after that for the auditory-verbal communication. It is mostly to teach us how to talk to her, etc. It will get a lot more intense after she gets the cochlear implants because at that point, she will have been behind a whole year of hearing and learning language. We definitely have a long road ahead but we love the way Natalie fits into our family so well. 

COMMENTS:

shelley kay

She is such a doll!

Friday, May 14, 2010 - 10:17 PM

laura

I love her blue eyes!  Cute bow.  Did you find out if she has the nerve for the implants?  Does the therapist work with you on learning sign language or do you have to learn that on your own? 

Natalie looks so smart and alert for two months.  I can't believe how time flies by.

Saturday, May 15, 2010 - 09:56 AM

Krista

She's getting so big!  What a cutie!

Saturday, May 15, 2010 - 03:46 PM

Becca Ford

Too darn cute. She seems like she's always so alert. You can tell she's a smart girl!!

Monday, May 17, 2010 - 09:22 PM

Grammy

Cute smiley picture!  She sure is growing up!

Wednesday, May 19, 2010 - 12:03 AM

denise

she is darling. I think her face and expression look a lot like sophie in the last picture

Wednesday, May 19, 2010 - 03:44 PM

Nana

What a cutie - I could tell she was smart and strong when I was out there - and it is not JUST because I am her grandma!

Wednesday, May 19, 2010 - 09:19 PM

Jody H

She is so cute! Big eyes and lots of hair. Sorry to hear about her hearing issues. We will keep her and your family in our prayers.

Audiology Visit

We had our first visit to the Pediatric Audiologist yesterday. Becky is our audiologist and I really love her! I think she will be a good fit for our family and she is so personable and I really need that right now. We will be seeing quite a bit of her this first year of Natalie’s life.

We went over all Natalie’s history and background of everything leading up to her diagnosis. Becky is so compassionate about everything and it is hard having to re-tell everything that we know. “No, we don’t have any hearing loss in our family we know of. No medications taken during pregnancy that could affect her hearing loss. No traumatic delivery.” It is just plain and simple that she doesn’t hear.

Our first step was to get fitted for hearing aids. I guess they are pretty pricey ($2600-$6000) for a pair! She was going to get in touch with our insurance to see what they cover. Tim had called the other day and I think our coverage is pretty good, so we will keep our fingers crossed. There are 2 pieces for the hearing aid. The outside piece is actually the hearing aid and the inside is the mold that holds it in place. They put this silly putty type substance into her ears that harden to form a mold for the inner piece. We can pick any color we want for the hearing aid as well as the mold. We can even mix colors together for the mold, so Natalie will be sporting some ear bling soon. Every few months we will get a new mold made for the ear as her ears will be changing as she gets bigger. 

We are not expecting her to hear anything with the hearing aids, but are required to use them until implantation. Becky said any information that gets into the cochlea is good, so maybe she will hear something. Natalie will be tested periodically to see if she is hearing anything at all but based on her “profound” hearing loss diagnoses, external amplification, or hearing aids will not really allow her to hear because of how severe she is.

Becky went over a chart with me that measures hearing loss and explained that as well. One side of the chart is decibels and the top is pitches, ranging from low to high sounds. There is a line on the chart where language and sounds are heard and our goal is to get Natalie above that line. 

Becky will arrange everything with us as far as ordering hearing aids, testing her hearing and if she gets the implants, then we will see her a ton after that. She is going to try and push for 9 months for the first implant (assuming the MRI is conclusive that we can do the implants) which would put that in December. After the surgery, you have to wait about 3-4 weeks before you get turned on. She said that appointment is the best and to bring family, video camera, etc. to record it. I have watched some videos on youtube and it has been so emotional for me to watch as these young children or adults hear for the first time. I can’t imagine what that day will be like to have a sound heard and for Natalie to turn her head towards it! It will be a day of happy tears. I am so amazed at the progress they have made in hearing and very grateful in the medical world for all the technology that is available now.

Becky also recommended getting Natalie’s vision checked and we have a pediatric opthalmology appointment set up for the end of June. Since she has lost one sense, the rest of the senses try to make up for that, so her vision is her biggest thing right now and we just want to make sure nothing is wrong there.

It was suggested that we also get genetically tested which we will do. The geneticist is booked 6 months out, so will just get an appointment since we are in no rush for that.

In the meantime, we will start speech therapy soon with a therapist that is known to  “teach a rock to talk.” There are also several other support groups that will get involved with which I am looking forward to. In about 2 weeks, Natalie will probably get her hearing aids and we will be underway in this long journey to try and get her to hear. 

Although I am deeply saddened by all that has happened in this small amount of time (not even 2 weeks) I feel like things are falling into place like they should be. It has been so much information in that time frame it kind of overloads the system. We are in good hands with good doctors, good support from friends and family and Natalie is still as cute as ever!

COMMENTS:

Laura

I am so glad you are updating everyone on this often.  I keep wondering and hoping all is going well.  I hope her eye tests will be good.  I think that will be awesome to see her reaction at about 12 months with the implants.  I am glad you have an awesome audiologist.   You are being so awesome through this hard trial.  I hope you can feel the love everyone has for you

Friday, May 7, 2010 - 06:42 PM

Shelley Kay

I'm glad everything went well. I am looking forward to seeing pictures of when Natalie hears for the first time. I'll bet that will be amazing.

Friday, May 7, 2010 - 08:13 PM

Anonymous

We know first hand how hard it is to have a child in need.  I totally agree with trying to keep life normal for the other children.  We wish you the best in the long journey.

Saturday, May 8, 2010 - 12:30 AM

Anonymous

PS from Adrian and Michelle Butler

Saturday, May 8, 2010 - 12:30 AM

Lohe

Melissa -

I'm so glad you guys found a good doctor to look over your sweet little girl. Knowing you, I can tell you that Natalie will have the best support any child could ask because she was born in one of the best families I know. You are a great mother, and with God's help, I know everything will be fine. She is a lovely little girl, and I know she will be very happy with all of you, such a loving family. Happy mother's day Mel, and God bless you and all your little ones.

Saturday, May 8, 2010 - 05:37 PM

Becca Ford

Thanks for all the updates. You guys are certainly in our prayers. You are such a fabulous family! You guys are lucky to have Natalie and she is lucky to have you!!!

Monday, May 10, 2010 - 03:05 PM

Nana

You sound like a pro already on the knowledge you have obtained.  You have accomplished a lot in a short amount of time!  Proud of ya!

Wednesday, May 19, 2010 - 09:24 PM

ENT - First Visit

So we had our first appointment at Natalie’s ENT yesterday. It was just a consultation to talk about what can be done for her. We are using the same ENT as our friends that have a son with cochlear implants. Ironically while I was there, I was mentioning to Tim that I don’t want to see any pictures of snails because they reminded me too much of cochleas. Well, I didn’t realize the shirt Natalie was wearing into her appointment.... The ENT got a good chuckle and so did we.

Our first step is to see a pediatric audiologist which we are seeing on Thursday. Natalie will be fitted for pediatric hearing aids on both ears. We (the doctor and us) and not expecting any results from these as her hearing loss was so profound. In order to qualify for cochlear implantation, you have to rule out that hearing aids or amplification does not work and that implantation is a better option. You have to have pretty severe hearing loss to have the implants. She will have to wear them for at least 3 months and just prove they don’t work. I will get a lot of more information tomorrow at the appointment. We will also start on speech therapy (yes at this age... can you believe it?) and from what I have learned, that is free from the state and I believe they come to our home.

The next step, around 3-4 months, Natalie will have to have an MRI to assess if she has the cochlear nerve and to review the anatomy of her ears. She will have to be sedated for this.

Around 9 months is when we will really proceed forward for implants. This is when we would go back to our ENT and review everything and set up a time to have the 1st implant done around 11-12 months probably. He usually does the left ear first and from what I gather, it would be a few months later for the right ear. Our doctor said that insurance companies in the state of NC are required to cover the implants under our insurance policy so that is good news. I am not sure what % they cover... but that was still good news.

We felt much better and hopeful after our visit with the ENT yesterday. He has been doing implants for about 20 years and has done over 200. He said he averages of about 10-15 per year. And cochlear implants range from all ages, it just isn’t babies or young children that have had this procedure done. He was telling us about a 5 year old boy that he had done implants on that is hearing and speaking  just as well as someone that has normal hearing... so we are very encouraged. Of course, she does have to have the nerve for this, but he told us it is pretty rare not to have it. 

This video on youtube shows what a cochlear implant actually is. It is interesting to watch:

http://www.youtube.com/watch?v=SmNpP2fr57A

Thank you to everyone who has called, offered to watch my kids or bring dinner. It is amazing how blessed we feel right now. I am sorry I haven’t been able to call as many of you back, but I will continue to update our blog  as we receive more information. We will feel so much better of course once she has had her MRI to confirm and we hope that will bring us better news. We are so lucky to have little Natalie in our home!

COMMENTS:

laura

She is darling.  I am glad you have a good doctor and it sounds like it is more likely she will have the nerve than not so that makes me hopeful.  I hope all goes well in these next months.  You will continue to be in my thoughts and prayers.

Thursday, May 6, 2010 - 08:21 AM

Kelli J

It sounds like the visit to the ENT was good...definitely encouraging. I've been waiting all weekend to hear how it went. I didn't know they did speech therapy this early either. I look forward to hearing how things progress. She is the cutest little girl and despite the challenges ahead is already such a blessing. I love you Mis! Please call anytime you need. I hesitated the past couple of days in calling you b/c I know you have so much going on as well as many others calling you too. I'm always here and if you find you want company or help...I'm just a few hours away. Love you and give your kids big hugs for me, especially little Natalie.

Thursday, May 6, 2010 - 12:43 PM

melanie

Great news!!  I'm so glad to hear it!  Thanks for keeping us updated.

Thursday, May 6, 2010 - 06:25 PM

Debi

I was so sorry to hear about the news of little Natalie, but your husband couldn't have chosen a better profession which gives him lots of ins.  It sounds like everything will work itself out and I will pray for her to have her little nerves!  What a cutie!  Good luck with all the future surguries and sedations.  Let everyone know before these happen so we can pray and fast for you all.  I will pray lots but can't fast...I can barely go a few hours without eating.  Funny how pregnancy does that aye!  Love you Missy and maybe I can come invade you this summer if you aren't too busy.  Love Debi

Friday, May 7, 2010 - 07:04 AM