Mikayla Love's Blog

January 2010

Mikayla Love — Fri, 29 Jan 2010 02:16:02 +0000

Well what can I saw. It’s here and so far it started off good. Mikayla had a great report at Dr Turtell’s Office who is the Eye Dr who suggested we go to Chops. I thanked him Graciously for saving my daughters life literally. Had we not have gone to him she would have been still not treated for Craniosynostosis.

We were told to wait six months till after her surgery to get her eyes checked and that is exactly what we did. Waiting was the hardest part however it was worth every bit of it. Getting Great results.

He did her eye exam and could not have been happier with her results. He said her eye pressure was Great. Her eyes were aligned perfect and pretty much all he had to say was good, good , good… That’s all I wanted and need to hear was that my little Baby Doll was doing awesome.

Mikaylas is such a fighter and such a determined little girl. I know no hurdle will ever get in her way. Although sometimes she is too aggresive and poor Mikey has to suffer the consequences but I like to see how she will never give up until she gets what she wants.

That’s my Princess !

xoxo

Liz

The month of December

Mikayla Love — Fri, 29 Jan 2010 02:06:38 +0000

Wow! I can’t believe it has been so long since I wrote. November and December were very busy months for us.

Back in November we met with our Mayor here in Toms River. Mayor Kellahar couldn’t have been more inviting to us. I received a call from him after he read about Mikaylas Story in the newspaper. We went to town hall to meet with him and discuss Mikaylas situation. I really wanted to get Awareness out there more than anything since NO ONE knows of Craniosynostosis.

Mayor Kellaher was more than willing to help us in anyway. He had Mikaylas story published in three of our newspapers here. Ocean County Gazette, Toms River Times and Asbury Park Press.

Since we were hit with Medical bills we decided to do a fundraiser Benefit to help offset our extreme bills.

I worked countless hours preparing for her benefit and it was a success.

Our Mayor attended and presented Mikayla with a proclamation for Bravery. We had Family, friends and our community attend. We could not have been more thrilled with the outcome.

We also has 10 other Cranio Families attend and it was such a good feeling to know we were not alone. Mikaylas condition has brought us closer to new families who have suffered the same disease.

We had alot of fun and for once we forgot what our painful year has been like. To see Mikayla smile for the day was priceless.

We are Thankful for all of your generous donations, cards and words of encouragement along our Journey. I hope to look forward to 2010 with this all behind us.

xoxo

Love to you all,

Liz

Mikayla’s Benefit – story in OC Gazette 12/11/09

Mikayla Love — Tue, 15 Dec 2009 01:41:48 +0000

PLEASE CLICK ON LINK BELOW AND A PDF FILE WILL COME UP!

OC Gazette_12 11 09

Mikaylas Bracelets

Mikayla Love — Wed, 18 Nov 2009 02:24:10 +0000

Support Mikayla Love Harbord and Craniosynostosis

3.00 a Bracelet. Please support Our daughter Mikayla and Craniosynostosis as well. Awareness is VERY IMPORTANT.. The bracelet is front and back . Pink and Purple Mikaylas favorite colors. Saying “Mikayla Love Harbord” and” Support Craniosynostosis “ We need to get it out there so children don’t do misdiadnosed like Mikayla did. You can send cash , check or credit card using pay pal. You don’t need a pay pal account to order. I can send you an invoice if you give me your email.
Thank You all for the Love… Shipping is Free!! US only..

Or click on the paypal link below

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=9789269

Mikayla’s Story – OC Gazette 10/2/09

Mikayla Love — Thu, 05 Nov 2009 00:07:37 +0000

Please click on story and it will open up in another window, where you can make the story larger by then again, clicking on the story!

Mikaylas Benefit at Vanity Fare

Mikayla Love — Sat, 31 Oct 2009 23:28:21 +0000

Vanity Fare

1600 Route 70 in Lakewood

December 6th 2009 from 1:30 to 5:30

Please join us for the Mikayla Love Harbord Benefit that will be held on Sunday, December 6th from 1:30 to 5:30 at the Vanity Fare located at 1600 Route 70 in Lakewood.

There will be a full Buffet, Gift auctions, Dancing and lots of other entertainment, including special guests.

All proceeds go to helping Mikaylas outstanding medical bills.

All kids will get their picture taken with Santa and receive a gift.

Tickets are $30 for adults $20 for kids 13 and under and 3 and under are FREE.

If you are a Cranio Family your invited to attend for FREE as well. You must contact me about that in advance.

You can purchase tickets by contacting me at ELIZABETHHARBORD@AOL.COM or by visiting Exit Realty Advantage 1182 Fischer Blvd Toms River NJ. See Mike there.

Tickets can be purchased by cash, check or credit card.You can use the paypal link below.

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=6nCGSkE9pd8asdMwzSK_3fKjzs3OthI-t2Gtb158jmnvFsIvOLO3-wtV948&dispatch=5885d80a13c0db1ffc45dc241d84e953d0e88f8d71535079b246201019c8adab
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All tickets must be purchased in advance. Their is a cut off date of Nov 30th.

Please come and support Mikayla Love and other Cranio families. We hope to see everyone there.

Thank you all for your continued support.

Liz

103.5 KTU interview 10.27.09

Mikayla Love — Wed, 28 Oct 2009 15:16:59 +0000

Me, Michael, Mikayla and Mike Mike as Cindy called him went up to New York yesterday morning to do an interview on KTU. We met Cindy Vero and the rest of the morning crew. It was an amazing interview. Cindy touched on all the things we set out to discuss. From the day we thought something was wrong till our current event such as Mikaylas benefit. I don’t want to ruin it by going into details now. That is the surprise you will all have to wait for.

The kids did well considering we were there a few hours. We are so grateful to have been on KTU to speak about awareness and Mikaylas Benefit at Vanity Fare on December 6, 2009.

I will keep you all posted as to when it will air. I am excited myself to hear it..

Thank You again Cindy Vero!

XOXO

LIZ

Appt with Dr Staffenberg Sept 29 2009

Mikayla Love — Fri, 02 Oct 2009 02:21:03 +0000

Well we were excited and nervous at the same time. The whole day was a bit nerve wrecking . Mikes mom had surgery on her eye. My dad had surgery on his throat and We were going to be two hrs away from home.

We got up and left pretty early. I wanted to keep my mind off my dads surgery. I felt so sad I couldn’t be with him. We ran some errands and took a slow ride into the Bronx.We arrived a little early so as we waited in the waiting room. We talked to some of the other parents. One family particularly has touched my heart in many ways. They have no idea what they are in for and It took me back to when I was in there shoes.

I hope to connect with them again because I would love to know how their boys are doing!

So we waited nearly two hrs to see Dr Staffenberg. He was running late but I can say this is the one time I did not mind waiting for a Dr. For two reasons . One I was afraid to hear “something didn’t look right” and two I could never be selfish when he squeezed us in so fast.

So Cynthia the nurse called us in. She was so friendly and warm. Even Mike commented on how nice she was and pointed out some good qualities to us we didn’t realize.

So in comes The Miracle Doc. He immediately greeted us with such kindness. He read Mikaylas operative report and basically said “She has a lot of healing still left” He checked her out overall. Asked us some questions and said” Although he would not have put the screws where our Dr did, but that is still OK”

She has been through a lot and to wait at least six months before an eye Dr examines her. To me right there it was worth the ride because our Dr told us 3 months. So needless to say she is not going now. She needs to let her eye muscles heal still.

After her examination and our great conversation with him. He answered all our questions. He really couldn’t predict anything for mikayla but said to take it one day at a time and let her heal. When he told us “unfortunately it’s going to get worse before it gets better” my heart sunk again.

I didn’t want to hear that but At least I can expect a lot more bumps and lumps and that is normal. He recommended we continue to follow up with our Dr as we have very good surgeons. But to never hesitate to call or email him if we are ever concerned again for Mikayla.

After our visit I felt so much better knowing this is all part of the process. I know it has only been 2 months but I guess we just didn’t expect any of this . I thought OK you fixed her head, her eye and everything else in between and now she will be fine..We didn’t anticipate her face and head changing by the day. Yes, her hair is growing back and soon she will be putting barettes in it.

Thank You Dr Staffenberg for making us feel so much better!

So at this point we wait till her next visit with Dr bartlett in Nov.

Mikaylas Bills and Pay pal donations

Mikayla Love — Thu, 24 Sep 2009 14:58:06 +0000

I have added a paypal link for Mikayla’s medical account. Alot of people along her journey have sent generous donations to help out and THANK YOU ALL! To make it easier for all of you, I have opened an account with paypal that will go directly into Mikayla’s account. Every bit of it helps. It’s unfortunate that these Insurance companies don’t pay as much as they should. So far to date Mikayla’s bills have exceeded $156,000. Our Insurance paid only $66 ,000 of it. Now I know I will be fighting the insurance co for it to be resubmitted and to lower our portion of our responsibility. As if we haven’t been through enough. Her bills are not even all submitted yet so I ache to see the final bill.

Thank you all from the bottom of our hearts!

The Harbord Family

xoxo

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=8433844

Dr Staffenberg calls

Mikayla Love — Thu, 24 Sep 2009 13:04:29 +0000

I would like to share this with you. It was very touching for us . When we were at the Gala, we didn’t have the opportunity to meet Dr Staffenberg personally. We wanted to ask him if these lumps and bumps were normal since we are nervous as to how her head is taking on this whole new shape with these screws and plates popping up. The night ended way too soon.

I emailed Laura Posada in regards to her getting us into see Dr staffenberg (The chief of plastic surgeon at Montefiore Medical Center) for a second opinion like she suggested the night of the Gala. When I tell you the response was so fast I could not believe it. Within hours of our email. Dr Staffenberg had called our house himself. He did call the house phone so I missed it but he did leave his contact info to reach him directly.

Dr Staffenberg

I called the office back and we are in for Sept 29th. I could not believe how quick we were able to get in. considering taking this all back in time it was weeks before Mikayla had her appt for her first consultation with her plastic surgeon. Little did we know what we were in for at the time.

I just wanted to Thank the Jorge Posada Foundation for making the call and getting Mikayla in to see the “miracle Doc of New York”

Right now we await her appt on Sept 29th which is also the day of my dads surgery so please keep them both in your prayers.

xoxo

Liz