|Posted by hope4delaney on June 21, 2016 at 12:40 AM||comments (0)|
It has been a really rough couple years for us. I have struggled with numerous surgeries and proceudres on my brain and neck. Ever since I was initially diagnosed, things for the CHUG have pretty much, taken a back seat. Fortunately, Bean has remained really healthy through it all!! Her lung function is the best it has ever been and she has continued to fight this battle without any major setbacks.
Our goal is the same at it has been from the start. To raise funding and awareness. We are 100% non-profit. All funds rasied go directly to The Childrens Hopital of Philadelphia Cystic Fibrosis Center. We have made substantial dontations in the past few years and are going to work even harder to see that it continues to happen. This center is why Bean and so many others have the ability to live life to the fullest. Contributing to the CF Center is our way of helping others who need it and provide funding for advanced research to be done in finding a cure.
Please join us in contributing to make our night the best yet! Feel free to email me at [email protected]om if you are willing to donate services for the night or a basket for our auction.
More information to follow!!
All the Best!
|Posted by hope4delaney on September 18, 2013 at 4:20 PM||comments (1)|
Well...... She loves school! LOVES IT!!! But come last Friday the cough and congestion came on. We knew it was a cold and nothing really alarming. Her fever was low and her respirations were good. So a trip to the pediatrician was scheduled for first thing Friday morning.
Antibiotics and additional treatments later, it was a long weekend. We are tired. Bean was coughing pretty hard in her sleep making us all on edge and her pretty tired throughout the weekend. She was a trooper like always though. Played hard when she felt up to it and rested a good part of the weekend. Exercise is encouraged. It give her lungs the opportunity to really open up and work. Any chance we get to run and play, we are all over it!
She fights us on taking her antibiotic. Even after they flavor it, its a BATTLE!! We eventually get it in her little body along with some decongestants and four (4) respiratory treatments a day. (these are 30 minutes each on a special machine that is actually pretty cool. Bean wears a vest with two hoses attached to it. The machine pushes air thru the tubes at a high velocity causing the vest to shake. She actually falls asleep with it on.) Two out of the four out of the treatments include a nebulizer treatment that help break up the mucus in her lungs. It contain a high amount of sodium. Salt is our friend.
The treatments decreased to three daily when she returned to school on Tuesday. We are hoping at the end of this week she is back to her "normal" self.
Keep the prayers coming!!
|Posted by hope4delaney on September 11, 2013 at 10:25 PM||comments (0)|
So many of you know me by now......im emotional. Especially when it comes to my girls. Delaney tends to draw different emotion from me however considering what we have been thru, continue to go thru and what is yet to come.
The day finally came.....KINDERGARTEN. Now, Bean has been watching her big sister Riley head off to catholic school for the last 4 years. You would of thought she would be okay with the whole uniform idea.......
So that was early August.....she must of just been in a mood because she had been SOOOO excited to be in school and "make new friends".
The first day comes and of coarse, I am emotional....hiding behind my sunglasses the entire time. Our little Bean walked up to her school like the bravest little warrior I have ever seen. Baring a gigantic smile and giving mommy and daddy a few kisses and hugs, she waved excitedly as she walked into the beginning phase of her new little life.
(this is when mommy hid behind a shrub on the playground and sobbed....then went to Mass, and cried the entire time....pathetic, I know.)
We have been so worried about keeping our feisty, excited little ball of fire SAFE for so long and now was the day when mommy had to step away and trust that everything was going to be okay. I have feared this day for five years and here it was, staring right at me. I continue to worry everyday about her. Is she taking her enzymes the way she should, is she around sick kids, doesn't she remember to wash hands and cover her cough.....everything you can think of, I have thought of 100 times already.
As the first week of school comes to an end, I am seeing a little change in myself. I see that brilliant little girl, jumping up and down, waving at me, giving me a thumbs up when they walk out in line for dismissal. She is SO happy. having her run into my arms and tell me that her day was awesome and she had a great day is comforting. YES, our Bean is a fighter. She loves life and fills everyday with that contagious laughter. God, please keep her here to share this gift of happiness with all that come into her life. (and help mommy cope with being alone for 6.5 hours a day...)
For now we will "keep on rockin' momma!" as Bean has now said to me every morning we walk out the door to face what the world may have in store for us.
Feel free to look at a few more pictures we posted from that day in the PHOTOS section of the site. There are others, but I need to stop crying when I see them in order for me to actually post them ......again, pathetic...
Keep Rockin' Everyone!!
|Posted by hope4delaney on June 12, 2013 at 7:55 PM||comments (0)|
So as many of you may know, there has been an big deal made about Sarah M and her fight to be placed on the adult transplant list. Since she was only 10 years old, she was not elegible for "adult lungs". Had she been 12, she would be. So I am so thrilled to post that Sarah's family fought so hard for her and a judge overturned the standing eligibility for adult lungs. Granting Sarah a small window to recieve a donor, Sarah got her lungs TODAY!!! 2 day shy of her parents challenging the intital ruling and asking for a time frame extension.
This entire story has overwhelmed our entire family. I cant say enough about how proud I am of Mr and Mrs M for taking on Federal courts and FIGHTING FOR SARAH! I am a huge advocate for being the voice of our children, so this entire situation touched us in the most overwhelming way. I do not yet know details of the procedure that included a double lung transplant of adult lungs into little sarah, that started at 1130 am. I have continued to pray so hard all day after hearing word from my sister that she got her lungs.
To put it all in persepective for you, today was a very long day. Bean finished preschool and we celebrated with her class at Storybook Land. We played and laughed with her little friends and I talked with other great (mom) friends and it was just an awesome day. She had a smile on her face the whole time and laughed out loud and screamed her little head off on all the rides. We then ended up at a birthday party that was filled with fun. Carnival style, Bean loaded up on sugar from the cotton candy and bounced on the trampoline for, what seemed like hours. Im so exhausted from the day that its not until now that I realize how lucky we are.
I post this crying over the keyboard and thanking god for the wonderful sound of her laughter and the most ridiculous things she says. I am so gratful for the stubborness she has. Shes just like me. Here way or no way. I truely believe that is the fight in her that will keep us all laughing for many years to come. (Mommy will be stressed beyond belief, but isnt that what is suppose to happen?!)
I would like to thank all of you for the continued support and encouragement for delaney. If it wasnt for you, this fight would be so much harder. Thank you for treating us just like everyone else. I wouldnt want it any other way.
If you get a minute, please read about Sarah. She is a vibrant little girl that is anxious to get out into the world. She now has that chance. Below is the link about Sarah getting her new lungs!
I have to say, there was one specific moment that truly brought tears to the eyes of Bernie and I. it was the voice of Dr Sam Goldfarb from the Cystic Fibrosis Center at CHOP speaking to the federal court judge about the condition of Sarah and the ABSOLUTE NEED for lungs in order for her to survive. Dr. Sam is Bean's Dr........ he is amazing, genuine, compassionate and 100% family to us. All of "Bean's Team" are. To hear his voice fighting for Sarah, was incredibly overwhelming...... I know, without a doubt that he would do it a million times over, and then for Bean (should we ever see this circumstance). Dr Sam----- I cannot thank you enough for being so amazing for these little people. We've known you since Bean was 1 month old and we are so incredibly grateful for your compassion and love. That is what makes you so superior to others!
Here are a few recent pics of Bean........ please keep Sarah and the other little fighter (Javier, from NYC) in your prayers.
All OUR love--
Jilian (Bean's Mommy)
|Posted by hope4delaney on February 13, 2013 at 10:00 AM||comments (0)|
I really have to keep up on this blog but these little women have me seriously burnt to the core! There has been so much happening since the last update I will try and get to the main points while keeping it light (of coarse). Here goes.......
So we enjoyed summer!! We had an awesome family vacation at the end of August with our Bma and Bpa! It was a week filled with unbelieveable memories that we will cherish forever!! Tropical sun kicks Jersey Shore butt hands down everytime....No. Contest.
We get home and begin to settle into somewhat of a school routine beginning with Delaney's checkup with her favorites at CHOP's CF Center. (Dr Sam, Ms Ali, Ms Debbie, Ms Kerri, just to name a few) Everything went well at that visit. She did all the standard stuff we do at a typical visit BUT this one was an extra special visit for us. Bean has been fighting the growth of a bacteria in her lungs called pseudomonus. This bacteria required intense therapy consisting of two additional breathing treatments a day (ontop of the two she already is doing), and additional antibiotics for anywhere from 20 - 28 days. Every three months they recheck her speutum (like a throat culture) to see if the bacteria is still present. The previous TWO checks were negative for the bacteria. SO...... if this check was negative, it meant bye bye to the gross mean pseudo germ and no more gross meds.
Unfortunately, I got the call a few days later that the bacteria had grown on her culture and that we would have to start the cycle of medication ALL over again. So, it was back to four treatments a day (each lasts 30 minutes) and antibiotics ontop of the nearly 30 pills and vitamins she has to injest daily :(........ BIG.BUMMER. Now, we get re-cultured every three months again. If after the cycle is complete (meaning you have tested positive for pseudomonas three times) you are considered to be colonized with the bacteria in your lungs. WE DONT WANT THAT. That means 2-3% lung function decrease every year of her life and she would become resistent to certain antibiotics with the pseudomonas now being a part of the big picture should she every get sick. Its not a "germ" that you catch from someone or something. We are told by her doctors in clinic that it is a bacteria that grows because many people with CF have that difficulty in clearing extra mucus from their lungs like a normal person could. So the bacteria kinda just hangs around and turns into this yucky stuff. No fair right?
But on a better note, in September we started school at First Light in Moorestown. She LOVES it!! It was so incredibly difficult to let her out of this little bubble of protection I kept her in to see that she was safe and healthy. But Delaney is so srtong, resilient, driven and VERY determined. She has so many friends and comes out of class everyday with a huge smile telling me about how much fun her day was.
She played soccer this year for the first time and LOVED IT!! It runs in the family so I can see why she did. She was the Orange CRUSH, but colds and strep throat kept her off the field for all but maybe three practices. She didnt mind at all. She was just so thrilled to be there and running around with the other kids, but clearly still has no clue what was going on. It was super cute!
2/12/13 - Checkup with Dr Sam again and all our favorite peeps at the CF Center!! It's always so fun. Its like Bean is a little celebrity over there. She walks in with her little disney mask on and gets weight and height checked (a whopping 37.4 pounds!) She was super bummed about her weight.....She REALLLLY wants to get into a booster seat. If I had it my way, she would be in a five point harness until she graduates. Its the protective bubble thing i guess.
Dr. Sam reccommended that we follow up with a GI specialist at CHOP to try and get Bean's bowels regualted better since the last thing I want for her to face in school as a kindergartener (ALL DAY) is potty issues. Also, an ENT. We have a snorer!! Just like daddy so a consult to check her sinuses and stuff as well as a sleep study is in the works. (I dont recall that being a very fun experience with Riley.....Im sure Bean will think it's awesome)
Her interests now are Scooby Doo, RescueBots, Chewy Chocolate Chip Cookies, The Winx Girls, Wendy's Chicken Nuggets, Panera Grilled Cheese, blackberries, cheese sticks and chocloate milk. She HATES wearing socks, even in the freezing cold winter. I find her in the car, boots and socks off watching one of her movies! As soon as we walk in the door from anyplace, her coat falls to the floor (wherever she is standing) as do her shoes AND socks. This Bean loves being barefoot. She loves lazy pajama days ( so does mommy ) fluffy blankets and snuggling up on her giant bean bag to watch toons.
That is the lastest and greatest from Bean's world at the moment. Thanks for keeping us in your prayers. WE are fighting a lot of battles outside of the CF fight as well, so the extra thoughts and words really do go a long way!
Stay safe everyone!!!
Jilian -Bean's Mommy
|Posted by hope4delaney on July 6, 2012 at 8:20 AM||comments (0)|
I apologize for not keeping everyone updated. Things in the house have been hectic here with the start of summer. Riley finished second grade and is thrilled to be moving onto third grade. She is swimming like a fish and plans on attending a soccer camp
this summer. When Bean and Riley arent great friends, they are great at being "typical" sisters :/.
As for our little bean......( insert head shake here) the stories I could tell you, I would be here for hours. She is sassy. Bernie would say she gets that from me. I proudly smile.......Wouldnt want it any other way :D!!!! She is stubborn. Also from me, which make for some interesting exchange of words in our house.
Bean has also taken to the water like a fish and is VERY VERY brave. A little too brave for mommy's comfort. She takes swim lessons weekly and is getting stronger by the week. She will be also participating in soccer camp with her big sister this summer and couldnt be more thrilled!!
Her recent three month visit with Dr Sam, Ms Ali and Ms Debbie was fun as usual. All smiles and actually turned into a dance party/ sing a long at one point. Seeing Bean sing these songs in the exam room was enough to light the entire complex - forget electricity! She was beaming! It was adorable and everyone was loving it! She is going strong with great lung function, a fantastic pulse ox ( 100% -- YEA!!! ) and BP as well as maintaining good growth. She continues to shoot up on the charts in height and her weight has maintained at 34 lbs. Which truly is no surprise since she NEVER stops moving. This summer is going to be the challenge for Bernie and I to see if we can get her to gain a pound or two. With as active as she is, gaining weight can be tricky. So its whole milks and such. She loves all of the new ice cream shops that are springing up around our area. Mix your own frozen yogurt places. We visit them a few times a week. Mommy and Daddy are now on diets.
She still prefers fruits to chips (which Im totally thrilled with ) hates vegetables (except green beans) and you can make her do pretty much anything for a Reeces Peanut Butter Cup.
She still has very funny "quotes" we call Beanisms and I have started recording "Potty Talk with Bean" for those lovely time we are out and about and she SUDDENLY has to go to the bathroom. So there we are in a public bathroom. With no books, I told her to tell me a story and recorded her. They are pretty funny. Her imagination is so wild and she has something to watch when duty calls
She took karate over the spring and totally kicked butt!! if we decide to give it a go again in the fall, we will definately post video.
Pre school starts in the fall as well. Four days a week in the mornings and she is excited. Mommy......not so much. Stressed out for now that our little Bean is growing up and we have to let her out of our little bubble that we have kept her so safe in. We pray every night that we have taught and done all that we can to keep her strong for ever and ever.
So on that note, please everyone have a safe and enjoyable summer.
We are headed to Turks and Caicos in August for our family vacation!! No jersey shore for this crew! We'll take the 5 days of turks sand for the same price as 7 days of jersey sand any day!
Pictures to follow!!
All The Best!!!
|Posted by hope4delaney on February 4, 2011 at 6:46 PM||comments (0)|
Well I'm sure our winter has been just as stressful as everyone’s due to the weather. But for those of you with little ones, they are having the best time of their lives with all this white stuff. Laney had a recent appointment for a "regular" checkup with Dr. Sam at CHOP and we couldn't be more pleased with the results. Laney is still within the 50% for height and weight, which is the most they can ask for her with regards to growth. And as usual Laney puts on her show for everyone who will watch during all her appointments. We have also had some good luck despite everything Jil is still battling, with Laney not having had any "real" illnesses this winter.
Laney and Riley have had a blast out in the snow this winter sledding and playing in the yard. As you can tell, if you check the pictures, Laney was bundled up and like most her age, battled to just move around let alone run and play like her big sister.
Now for the hot topic of the moment, Laney is now "potty trained" by her standards and ours so far. We have had a week of "big girl" panties with no accidents including nap time. Laney only wears a diaper to sleep at night and most mornings has come running into our room dry. She is soooo proud of herself and so are we.
The only downside is the toys mommy promised her for enticing her to use the potty. Here is a quick breakdown of the toys she earned, and requested, while potty training. . . .She has gotten: 1.) a large yellow Tonka dump truck, 2.) a big, bright red fire engine,3.) a tape measure, 4.)a Home Depot tool belt and most recently 5.) a pair of roller skates. . . .
Now the last time I took her to get her present we wandered the isles of Toys R Us and upon walking down the "tool" isle she froze. Her eyes were as big as they were on Christmas morning. She immediately said "Daddy, I want tools". So first she wanted a leaf blower, then a weed whacker, then a chain saw and lastly a track hoe, big enough to ride on. After a little convincing from daddy she got a tool belt.
The only thing better than seeing her in the tool isle at the toy store was seeing Jil's face when she came home to find Laney wearing her tool belt with tools, hard had and safety goggles after telling mommy previously she wanted a talking baby doll.
I hope everyone is enjoying the winter weather and staying safe. I'll be back with another Daddy update soon.
|Posted by hope4delaney on May 23, 2010 at 4:18 PM||comments (0)|
Well I might as well tell this story since according to Mommy, "it happened on my watch" last Sunday.
We were swimming at my parents when it was time for Laney to come out and get dressed in her jammies to go home. Jil stripped her down when taking her out of the hot tub and i wrapped her up in a towel since I knew it was going to be cold in my parents’ house.
Once we walked in the back door I placed Laney down on the hardwood floor so i could grab her diaper and jammies, which were about 2 feet away. As I turned to retrieve these items, Laney decided to take a step and since she didn't know this wasn't going too well being wrapped up in a towel, fell flat on her face and hit her chin on the floor.
As I turned believing the thud I just heard was Laney falling, I noticed the blood on the floor and the tears and screaming started almost instantly. When I snatched her up off the floor I could see the blood running from her chin and thought she’s gonna turn out just like her daddy. For those of you who don't know, I split my chin open 3 times as a kid and got stitches every time.
So after I calmed her down and wiped off the blood i could, i took her out to her mommy to show her the damage to her precious little girl.
After some looking at the cut and a few phone calls we decided to head to the hospital for a professional opinion.
Long story short poor little Laney got strapped down like a mummy and was given 2 stitches to her chin. So there you have it, 2 years old and 2 stitches to her credit already.
|Posted by hope4delaney on May 23, 2010 at 10:05 AM||comments (0)|
Hey All -
Just a quick update on our recent adventure to the Philadelphia Zoo for the Great Strides walk for CF. Our AWESOME group of supporters consisting of friends and family enjoyed a day of laughter and a little rain for a great cause. We explored, watched and learned all about the various animals that the zoo has to offer.
The little ones were so fun to watch as they were able to get an extra close look at the polar bear swimming, a peacock wandering around the park and a very large gorilla........ that decided to run full speed at the glass window and scare the you know what out of the lil bean.......(it was kinda scary actually.....he had some VERY LARGE teeth!!) I was so caught of guard by it that i couldnt even get my camera out in time......i was fumbling as i watch this enormous, and not so happy ape come charging at me and my lil nuggets......shesh......then he casually sat on some cardboard and lounged around while everyone laughed and talked about our encounter. Definately something we will never forget!!
Bean is doing well. She is still working to regulate the GI issue by taking three doses of Miralax daily. We keep a close eye on her hydration so we dont create another issue. She did wake up with some congestion and we have noticed she is sleeping more with her mouth open. A couple coughs in her sleep as well - so, hopefully what we do in the next few days (increasing her treatments) will make her feel better.
Bean is fearless. She loves to swim at Bma and Bpa's also. I can see already that we will have another lil fish on our hands. Swim lessons WILL start very soon for this little one.
I have posted picks of Great Strides 2010 in the photo section of the site. Thanks again for all of the support from my AWESOME family and friends.
|Posted by hope4delaney on May 10, 2010 at 1:10 PM||comments (0)|
Yup....2 Years Old!!! Where has the time gone?? Delaney has been such a wonderful light in our lives that looking back, we cannot imagine life without her. The struggles we face daily with her and her care are overwhelming some days, but to hear her giggle, to tease her sister or to just be down right bad, brings tears of joy to my eyes. What a lucky mommy i am to have this little bean to keep me laughing.
We had a recent stay at Hotel CHOP on Thursday May 6th. Delaney is very good now at expressing herself. She had been telling us that she has "boo boo belly" lately so we had been keeping a close eye on her activity "down there". During her last visit, a scan of her abdomen showed alot of stool in her large intestine and colon so Dr. Caboot and Dr. Goldfarb recommended we up the dosage of Miralax in an attempt to clean her out at home. She continued along the same path. A consistent 2 a day pooper she remained, even with the increase in laxative. Then, all of a sudden, she stopped. Day two of no activity and we were at the clinic with a very unhappy Bean. Her appetite decreased significantly, she was distended, and just not her perky lil self.
Scan #2 reveal the same as scan #1......poop. So Bean was admitted for a "clean out" in the hopes that no major blockages would be detected and to help move things along for her. We agree as parents, that an aggressive approach to her treatment is the best thing for her. We feel that the longer you drag it out with her, the more irritable and impatient she gets. We want "the quick fix" but know that isnt going to be realistic with her treatment depending on the circumstances. So, she was admitted and an endoscopy was done. (there is a fancy name for it-but it escapes me at the moment) They filled my baby with 1000 cc's of fluid to help the "poop get outta my belly" as Laney told the radiologist. It was really cute. They provided a small amount of sedation for her during the treatment since the last time this was performed, it was traumatic. (for her and us....HORRIBLE!!! to say the least.) The sedation worked well. She cried a few times but was easily calmed by myself and Bernie. Much better this time
We returned to our room, gave Bean her favorite McDonalds chicken nuggets, french fries and vanilla milkshake and waited......... then the fun began.
Mommy got pooped on, but thankfully brought a change of clothes and was able to clean up in time for bed. Daddy decided to spend the night so I could get home to RIley. It was a rough night, with Bean getting up a few times throughout. However, 24 hours later, we were being discharged!!! Scan #3 performed in the morning showed "no poop"...... she was officially cleaner on the inside than she was on the outside. It couldnt have worked out better as we were two days away from a birthday celebration for this little fighter!
We will stay ontop of the poops with Bean as she is to remain on an increased amount of Miralax for a little while and slowly back her off to a lower dose. She is doing very well and amazed us again at how quickly she rebounded.
We are looking forward to a summer of fun as BPA already opened the big pool and Delaney thinks its the best thing in the world!! Scares the" poop" outta mommy that shes fearless so life jackets will be on before she step one foot outta of the car. Hey - everything i gotta to to keep this little one around, you can bet i'll be doing it!
Birthday kisses from Bean to you! Hope everyone stays big and strong over the summer and enjoys the sunshine.:cool: