McKenna’s Doing Great

We just wanted to update everyone on Ms. McKenna.  She is doing very well and has adjusted wonderfully after her surgeries 6 months ago. I was able to take a trip to West Palm Beach to visit the Conrad family earlier last month.  The whole crew was doing wonderfully.  McKenna has grown so much and she is a pretty excellent swimmer not to mention an adorable little girl.  Bela bear is also doing great in kindergarten and wow what a sweetheart she is.  I took the cutest photo of McKenna swimming with all of us.  She was sharing toys with Baby Zoey and Uncle Adam was playing “toss the baby” in the pool.  She thought it was the best thing ever. I was so sad when we had to leave our vacation early.

Tracy sent me Halloween photos at the beginning of the week and OMG Bela and McKenna were adorable. Bela was a flapper girl with the shimmy shake dress, boa and headband. She looked fabulous dawlin’.  McKenna was dressed up as the most adorable little gnome I have ever seen in my life. Tracy said that everywhere they went, people commented on their adorable and unique costumes. Too cute!

 

McKenna really is doing great and so are The Conrad's and that is in part thanks to all of you.  Your donations and purchases during our various fundraisers has truly relieved the financial burden McKenna’s surgeries have incurred. I am proud to say that to date we have earned $1504.46. $220.00 of that was solely from the A Mother’s Love kits that were sold through www.scrapoutsidethebox.com.  A huge thank you goes to Walter and Pam Pate for their generous donation to McKenna. We can not thank you enough for helping your extended family.

But there is still much we need to do to finish our task at hand.  Our current funds will take care of the minimum monthly payments through February of this year but we still need over $3,600.  We have some great ideas lined up for earning funds including art projects, bake sales, and much, much more.  We look forward to sharing more of McKenna’s adventures and our creative ideas with all of you. Be sure to visit our sister (no pun intended) sites to see what activities we have going on in the creative market.

Thank you again everyone and of course, Happy Holidays!

Brandy Pate a.k.a Aunt Bannee

Thank you for your Support

We wanted to post a general thank you to everyone that has donated to the Hope for McKenna fundraiser or purchased the digital scrapbooking kit "A Mother's Love" from http://www.scrapoutsidethebox.com/. So far we have received $660.00 in donations and sold $175 worth of the charity kits for a total of $835.00 reaching 18% of our goal. We are searching for alternative methods to raise money for McKenna's past and upcoming medical bills, so please be on the lookout for these upcoming offers.

A little follow-up on McKenna's well-being; she is doing well but still has a few doctor's visits lined up for the near future as well as a big move to southern Florida. The Conrad's are moving from Panama City to West Palm Beach in the next month. This is a good move because McKenna will be closer to her doctors in Tampa. McKenna is almost 17 months old and weighs about 21 lbs (the same as my 10 month old). She just healed from a double ear infection however the doctor feels that she may need to get tubes in her ears. She is scheduled to visit an ear, nose and throat specialist just to be sure. She also needs to visit the dentist because of the alignment of her teeth from her cleft palate. In addition, she will need to begin speech therapy to ensure that she will not have a speech impediment in the future. I don't think talking will be much of a problem, because just yesterday, she figured out how to call me on the phone. I listened closely to that adorable little voice as she jibber jabbered on and on about something so intently. She certainly had something to tell Aunt Brandy. Aunt Dani said she had called her as well and told her the most exciting but intangible story. What a cutie pie.

So, all in all, Ms. McKenna (or "Sister" as Bela calls her) is doing well. She has healed well and responded wonderfully to the surgeries and massive amounts of doctors’ offices she has been in and out of. We are hopeful that her physician visits will become fewer and farther between. She is eating well, growing strong and always playful. Her innocence and joyful spirit will heal her ailments, and she will grow into a beautiful toddler and young lady one day. I know this in my heart.

Thank you for all you have done and your continued love and support. Please share McKenna’s story of love, courage and community support.

Miss McKenna Before and After Surgery

We apologize for not having posted in quite a while.  We wanted to let everyone that it has been two months now since McKenna surgery and she is doing well.  She has adjusted to her new eating and speaking habits.  She has started walking and talking both as fast as she can.  She still has problems with a few syllables like “ma ma” but other than that she loves to jibber-jabber on the phone to anyone who will listen.

I did want to mention that though the surgery itself went well for McKenna, she did have to stay in the hospital additional days because she refused to eat. That being said, Tracy, Jimi and even Bela’s due diligence helped McKenna in the end.  She took enough fluids and proved to the nurses that she would eat and was released a day later than scheduled.

The largest unfortunate occurrence was the inhospitable nature of some of the staff at the hospital.  McKenna was changed to the cardio-vascular unit meaning that no one was allowed to stay overnight with her.  Tracy had to sleep in the waiting room while her 14 month old slept in a room with two other children, a teenage and a newborn who had just underwent open-heart surgery. After three long days and two hard nights, the Conrads went back to Grandma and Grandpa Perez’s house for some much needed tender-loving care.

 

I wanted to share with you a scrapbooking page of McKenna before and after her surgery.  There are two adorable photos of her in her hospital gown playing in the waiting room just before surgery.  The third photo is McKenna recovering with her no-no’s on her arm to keep her from putting her hands in her mouth.  The pour baby had to eat through a syringe for over 12 days. Tracy said she looked like a little bird when she ate.

McKenna is such a trooper and we are so proud of her recovering so quickly. Thank you to everyone for your concern and prayers.  Your support means the world to this adorable little girl.

Much Love,

Aunt Brandy

Miss McKenna Before and After Surgery

We apologize for not having posted in quite a while.  We wanted to let everyone that it has been two months now since McKenna surgery and she is doing well.  She has adjusted to her new eating and speaking habits.  She has started walking and talking both as fast as she can.  She still has problems with a few syllables like “ma ma” but other than that I she loves to jibber-jabber on the phone to anyone who will listen.

I did want to mention that though the surgery itself went well for McKenna, she did have to stay in the hospital additional days because she refused to eat. That being said, Tracy, Jimi and even Bela’s due diligence helped McKenna in the end.  She took enough fluids and proved to the nurses that she would eat and was released a day later than scheduled.

The largest unfortunate occurrence was the inhospitable nature of some of the staff at the hospital.  McKenna was changed to the cardio-vascular unit meaning that no one was allowed to stay overnight with her.  Tracy had to sleep in the waiting room while her 14 month old slept in a room with two other children, a teenage and a newborn who had just underwent open-heart surgery. After three long days and two hard nights, the Conrads went back to Grandma and Grandpa Perez’s house for some much needed tender-loving care.

 

I wanted to share with you a scrapbooking page of McKenna before and after her surgery.  There are two adorable photos of her in her hospital gown playing in the waiting room just before surgery.  The third photo is McKenna recovering with her no-no’s on her arm to keep her from putting her hands in her mouth.  The poor baby had to eat through a syringe for over 12 days. Tracy said she looked like a little bird when she ate.

McKenna is such a trooper and we are so proud of her recovering so quickly. Thank you to everyone for your concern and prayers.  Your support means the world to this adorable little girl.

Much Love,

Aunt Brandy

Update on McKenna's Surgery

Well, McKenna is out of surgery in recovery. Mommy and daddy can't see her yet. She was in so much pain that they put her back on pain meds and she is resting. While she is fine and healthy, the prognosis is grim.

Doctor Soler told the parents that McKenna's case is very rare. In most situations, the palate on either side is too small. The doctor goes in and takes the skin off the bone and stitches it together in the center as a make-shift palate just without bone. But in McKenna's case, one side of her palate is 1/2 where it should be and the other half is 1 1/2 times the size it should be and completely twisted. They were able to sew it together but part of her bone is exposed and they hope that it will heal itself. There is a huge dip in the palate which should be flat and the artery that normally runs across the palate is all the way at the back of her mouth.

The doctor's prognosis is that McKenna will require a bone graph and braces to correct her crooked palate, requiring her jaw to be broken and rewired! She will also require a missing tooth to be replaced and then plastic surgery for her nose to replace the lacking cartilage.

For the next two weeks, McKenna will have to go back on formula and eat from a syringe, because any suction could pull the delicate stitches apart. Please keep her and her family in her prayers on her road to recovery.

I will keep you posted on any progress or setbacks. Again, your help is still greatly needed, especially now knowing that her situation is every worse than we originally thought.

Thank you in advance,
Dani
SOTB Owner and McKenna's Auntie

It's Official

Well, ladies and gents, it's official. McKenna's charity kit is complete and in the Scrap Outside the Box store. It's called "A Mother's Love" and it gives the word "mega" a whole different meaning. Remember that 100% of the proceeds of "A Mother's Love" go directly to the hospital and doctor's bills.

We hope that you will dig deep into your digiscrapping budget and make a little girl and her family very happy.



To purchase the kit, click here.

Thanks,
Dani

Come so far...

Just thought I'd share with you a picture I found in my email folder today. This was McKenna after she had the latham appliance drilled into her mouth. The rubberbands are much like those of orthodontics in that they pull the soft bone of her mouth close enough together so that they can sew her lip together.

After three months and two appliances, they were finally able to sew her lip and nostril together. The result of that can be seen in the header pictures above. On the outside, she looks almost normal other than that small scar and one flattened nostril that lacks cartilage, but the inside of her mouth is a different story. She is missing about 75% of the roof of her mouth which exposes her nasal passage. When she eats, much of her food goes up and out of her nose. Now that she's a little older she knows how to move the food to either side of her mouth so that she doesn't aspirate it. She eats insatiably but remains in the 25% percentile for her height and weight.

The cost for performing these procedures weighs in at over $39,000. Fortunately the Conrads have insurance but a balance remains of almost $5,000. This doesn't include lost wages and their driving expenses. And she has more surgeries to come...

McKenna is scheduled for palate surgery on March 6. Even if the surgery is successful, McKenna may still have to undergo even further operations, including tubes in her ears and dental reconstruction. How much will these cost? That remains to be seen.

And if that wasn't enough, the family attempted to file for medicaid only to be told that they make $9 too much a year to qualify...Something seriously has to be done with health care in this country. But until then, we all must rely on each other and the generosity of strangers.

McKenna's story is not uncommon. One in every 500 babies born are diagnosed with a cleft lip and/or palate. We know that in these times of economic crisis and hardship that there are hundreds of stories like McKenna's, and it's easy to look away and say, "What can one person do? What will my contribution matter?" But hope starts one child at a time. And it makes all the difference in the world...please help bring hope to McKenna and her family.

Thanks for reading,

Dani