History

Journal History

Friday, December 19, 2003 3:49 PM CST

Hello all.. Happy Holidays!!!Harley has been doing good lately.I want to let you know that Harley had her Cleft Palate repaired and it was a success.Harley is so excited about Santa Claus coming in a week.Keep up the good work.

Tuesday, June 3, 2003 9:44 PM CDT

Harley came over for the first ten days of her visitation and she had a blast.She was well the whole time.I had to work alot but she stayed with her step sisters and hung out.I worked different shifts so a couple of days she didn't go to Daycare.Harley is doing so good with her sign language.I always have to research the signs cuz I have no idea what they are.Keep Up The Good Work BabyGirl!!!!!!

Monday, May 12, 2003 8:47 PM CDT

Harley did not come over this weekend because she had a Dr. appt. and I had to work.She is coming over this weeek for about 10 days.Harley has come a long ways.I see a lot of determination in Harley.She will not stop trying.Good Job Baby Daddy loves you so very much.As soon as I find out what the dr. says about the surgery I will post it.

Friday, April 25, 2003 3:06 PM CDT

Harley had a evaluation on 4/22/03 and this is a summary.

Name: Harley Poore Age: 25 months and 21 days
DOB: 03/01/01 Date of Evaluation: 04/22/03

Conition/Problem Solving:17 months age equivalency.
Self-Help/Adaptive:15 months scattered to 21 months age equivalency.
Social Emotional:18 months scattered to 24 months age equivalency.
Language:15 months scattered skills to 24 months equivalency.
Motor:13 months

Weight:23.12 pounds Length:32" Head Circumfrence:45.75 cm.

Strengths:Continues to make nice developmental gains. Very social and vocal. Harley is a good visual immitator.
Concerns:Continues to have low muscle tone.
Suggestions:Continue to allow Harley to do more things herself. Continue with present therapies, monitor haering.

Thursday, April 24, 2003 9:45 AM CDT

Harley visited on Easter. The Easter Bunny was very good to Harley. She wasn't feeling to good while she was here. She is supposed to come over this weekend. Daddy and Harley will be spendind all weekend out doing things like going to the park. Hopefully she'll be feeling better.

Saturday, April 12, 2003 5:37 PM CDT

Harley is currently in Kent General Hospital located in Dover De. She was rushed there by the ambulance. Her temp. was very high and she was blue so they admitted her to the Pediatric Dept. I called there today and she was only on 25% oxygen and her temp. was down. Keep your head up baby.

Saturday, March 1, 2003 4:18 PM CST

Today is Harleys 2nd Birthday we have the next two days planned out. Harley and her step brother have a birthday tomorrow at their Aunt TaTas House. She has another ear infection. I keep cleaning it out and puttin the drops in and hopefully it will clear up.

Sunday, February 2, 2003 8:57 PM CST

Harley came over to her Step moms and Dads house this weekend and was sick Friday night. It was around 3:00am and we woke up due to an odd wimper sound from Harley. She had gotten sick every where. I washed her up and laid her in bed with us. About 20 minutes later again gotten sick every where. Again I washed her up and then she was fine.We senced something was up with Harley because she was not as playful as she always is. Harley had a good time with her sisters at a birthday party Saturday evening while I was working she was adored by her new family that care for her as their own. Harley was real sad to say Bye this weekend. But I told her she'll be back soon.

Sunday, February 2, 2003 8:20 PM CST

Harley was diagnosed with Von Willebrand's disease. Below you will find an overview of Von Willebrand's disease.

Von Willebrand's disease
Provided by A.D.A.M.

Definition
Von Willebrand's disease is a hereditary bleeding disorder caused by a deficiency of von Willebrand factor. Von Willebrand factor helps platelets to stick to the blood vessel wall and to each other, which is necessary for abnormal blood clotting.

Causes, incidence, and risk factors
Von Willebrand's disease is the most common hereditary bleeding disodor. It affects both sexes approximately equally. Most cases are mild, and bleeding may occur after
a surgical procedureor tooth extraction. The condition is worsened by the use of aspirin and other nonsteroidal
anti-inflammatory drugs{NSAIDs}.Bleeding may decrease
during pregnancy.

The disease is very common, affecting at least1% of
population. There are no racial or ethnic associations
with this disorder. A family history of a bleeding
disorder is the primary risk factor.

PREVENTION
There is no known prevention.

SYMPTOMS
Nose bleeds
Bleeding of the gums
Bruising
Skin rash

SIGNS AND TEST
Normal platelet count
Prolonged bleeding time
Reduced von Willebrand factor level
Reduced platelet aggregation {platelet aggregation test}
Ristocetion co-factor is reduced

This disease may alter the results of the following test:

Factor VIII level
von Willebrand factor multimers

Researched and printed up by Harley's Stepmom Annie.
and her Dad Dorsey.

Sunday, January 19, 2003 at 08:04 PM (CST)

Harley was over to her Dad and Stepmoms house this weekend and all went well except on Saturday evening her inside of her right ear started bleeding but before it started you could smell a bad odor like an infection. After I cleaned her up she was fine she ate well all weekend. Today we went to the Dover Mall and purchased a brand new pair of Air Force One Nikes. They are white with the pink stripes. Harley like them so much she didn't want to put her old shoes back on. That tells me shes growing because her old shoes was a size too small.I am calling the Dr.s office tonight to make an appointment to see her.

Sunday, January 12, 2003 at 09:43 PM (CST)

Harley is doing well. She is starting to crawl. Harley is putting pressure on her feet to try to step. She is able to step with the help of her Step Mom and I. Every other weekend I try to get her to stand up and attempt to step. She did not have her surgery in October of 2002. The Cleft Palate Team has not set a date, but as soon as I hear of one I'll let you all know.

Wednesday, January 08, 2003 at 07:03 PM (CST)

Sunday, June 02, 2002 at 08:14 PM (CDT)

At 14 months of age (May 2002) Harley was asmitted nto A.I. DuPont for Cleft Palate Surgery. That operation takes about 3 days until a child's released from the hospital. During surgery Harley inhaled some blood which resulted in aspiration pneumonia. She remained in the PICU Unit (Pediatric Intensive Care Unit) for about 3 weeks on a breathing machine. The PICU Unit attempted to remove the reathing tube numerous times and her lungs would collapse so they reinserted it. Harley had 5 blood transfusions & 3 trips to the operating room. She was in coma for about 2 and a half weeks. She is currently withdrawling from Methadoen due to being on Fentinal. Harley is home now but sadly, the operation was not successful and the palate remains open, so she has to be admitted again into A.I. DuPont for Cleft Palate Surgery in 6 months.

Wednesday, January 08, 2003 at 06:54 PM (CST)

Tuesday, June 04, 2002 at 03:31 PM (CDT)

We have become so close to couple of featured kids from Hugs and Hope like Elizabeth S. She is a very bright 5 year old. She knows things no child should know about, for example Ports, Central Lines, Chemo, Tumors, and Cancer. The night before her surgery she made me give her a piggy back ride up 3 stories in the Ronald McDonald House. You cannot help but love her. Every time we go to Jenn's house Harley always seems to have fun. That's because Jenn (Elizabeth's Mother), Lorrie(Elizabeth's Grandmother), and Wally (Elizabeth's Grandfather) are always playing with her.

Wednesday, January 08, 2003 at 06:47 PM (CST)

Wednesday, June 05, 2002 at 12:23 A.M. (CDT)

Another Hugs and Hope kid that we have become close to, is Kevin W. The weekend before Harley's discharge, we went to meet Kevin W. and his family. Kevin, his brothers and sisters and I played all afternoon. That night Harley would not stop crying and we passed her around. Once Big Kevin Held her, he walked, talked, rocked, and sang to her unitl she fell asleep. She slept for about 3 hours. Big Kevin gave Harley a photo album that he personally made. It's just like the ones you pay high dollars for. They are all great friends that we never want to fall out of contact with.

Wednesday, January 08, 2003 at 06:41 PM (CST)

Wednesday, June 05, 2002 at 10:11 P.M. (CDT)

The day after Harley's surgery, a nurse came in and told us there was a visitor for Harley, so I walked out of the PICU Unit and there stood an "angel" from Hugs and Hope sent by God. We gave each other a big hug and cried together avout Harley in a coma. We stayed n contact and she gave us TGI Friday's Gift Certificates for dinner, and she always had Get Well Gifts for Harley...I wish Harley could have seen all things people have done for us. When Harley was discharged she didn't get to see Rhonda due to an illness. I wanna tell Rhonda Thank you and We Love You!!!

Wednesday, January 08, 2003 at 06:36 PM (CST)

Thursday, June 06, 2002 at 07:01 A.M. (CDT

Last night we found a child just like my daughter Harley. They have the same birthdates as well as Digeorge Syndrome. They were looking for someone that had Digeorge Syndrome and we found each other. I told them to check out Hugs and Hope as well as Harleys Web Site. There is a Great group of people. AS soon as i get Zacharys site I'll post it. Good Luck Zachary and his family........

Wednesday, January 08, 2003 at 06:27 PM (CST)

Thursday, June 06, 2002 at 07:12 A.M. (CDT)

Yesterday Hrley went to A.I. DuPont for a check up. For the most part she did will. The problem they are having they can not see the tue in her left ear. So we have to go back to A.I. in 3 weeks to see if they can see it if they can't most likely they'll have to reinsert a tube in her left ear. Once we got back home we had to take her to yet another Dr. appointment. On 6-5-02 Harley weighted 15lbs 3ozs her height is 28 and a 1/2 inches long. Yes my Babygirl is up to where she supposed to be. Yes she's small (like a 6 month old) but she'll slways be petitle.

Wednesday, January 08, 2003 at 06:25 PM (CST)

Thursday, June 06, 2002 at 05:20 PM (CDT)

The following sites can be helpful in understandind Digeorge Syndrome (VCFS)

www.vcfs.net/draft/bk_full.htm
www.vcfsef.org
www.vcfs.net/22q11/indexwf.htm
www.vcfs.net/draft/bk_index.htm
www.cbil.upenn.edu/vcfs/22qandyou/medicalneeds.heml
www.crosslink.net/~marchett/vcfs/auspar.htm
www.nlm.nih.gov

Or you can reach Dr. Robert J. Shprintzer

(Founder of Digeorge Syndrome) at shprintzer

You can see another child born on the same day and have the same syndrome and look something alike. His name is Zachariah. We want to wish best of luck. He has been through so much. We know what badyboys parents went through and will go trough.

www.caringbridge.com/nc/zachariah

Sunday, January 05, 2003 at 05:39 PM (CST)

Re: Harley C. Poore
March 30, 2001

DOB: 3-01-2001

Harley Poore is a one month old former 35 week premature infant with Catch 22 Syndrome/ Velocardiofacial (VCFS) Syndrome and possible DiGeorge Sequence. VCFS is caused by a deletion of a small segment of the long arm of chromosome 22 , and thus is specified as 22q11.2 deletion.
Consistent with this chromosomal deletion, Harley has complex cyanotic congenital heart disease (interrupted aortic arch, VSD), cleft palate, feeding difficulties with pulmonary aspiration, parathyroid dysfunction, immunologic abnormalities/dysfunction, craniofacial abnormalities, vocal cord paralysis with abnormal left main stem bronchus. In the future she is likely to have growth failure, psychosocial problems, and learning deficits.
Although at this stage it is too early to determine the specific medical therapy for discharge,the following is likely.
G-tube feeding for 1-2 years
Altered nutritional sources
Airway difficult for 1-2 years
Immunodeficiency with predispostion towards life-threatening infections(not a candidate for day care environment)
Endocrine abnormality with supplementation likely with calcium Vit D
Repair of cleft palate
Speech Therapy
Occupation Therapy
With advancing age-psychosocial and learning special needs
If you have any further questions concrening this infant, please do not hesitate to contact me at anytime.

Robert Locke, Do
Attending Neonatologist
A.I DuPont Hospital for Children

Saturday, December 28, 2002 at 07:31 PM (CST)

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