Not So Very Merry!

Wow! Where to begin! Alot has changed since my last update!

Well on December 1, 2010 she went too see Dr. Perez since she seemed to be getting sicker! He had changed her meds up! He actually put her on three new ones! She is now taking Pulmozime, Hypertonic Saline && Cipro. She has been ill with pseudomonas since September 28, 2010 and is just now showing improvements with that. Since mid November she has been having alot of tummy/rib pains as I mentioned before. I had her in the ER and in the doctors office! All of her chest xrays looked well except for a little inflammation. So basically we had gotten no answers to why she was having pains!

Today December 15, 2010 she had an xray done that revealed she is really full of stool on both sides of her tummy. Her tummy is very swollen and hard. I could not get her jeans buttoned this afternoon. I called her GI doctor and had spoken back and forth with his nurse. When she was in his office on September 9, 2010, he wanted to decreased all of her laxatives since he did not like the amount she was on (6 pack of miralax, 2 doses of milk of magnesia, 2 doses of fletchers castoria && 2 fiberchoice), it was an excessive amount for a young child to be taken. We decided to wean her off of the fletchers castoria and MOM and see how well she does. He said to give it a few weeks. And if things didn't start improving he wanted to put her into the hospital and do another complete cleanout with another NG Tube! The last NG Tube she had done was just a few months ago and she was miserable! He wants to try her on a pill that isn't clinically proven for young children. It works a different part of the GI Tract! I haven't taught her how to swallow pills just yet. I am just not ready for that! She has been through so much this past year, learning to swallow pills can wait another year! Well that is all about to change because he is going to teach her in a few days once she is cleaned out. She was doing well at first but all of the sudden things started slowing down! I am nervous, scared and apprehensive about allowing her to try this new medication. (I will get the name when I call in the morning).

Throughout the day today she was barely eating but was drinking a good amount but she had alot of pain and gas. I needed to get things done and packed so I allowed her father (against the court order) to take her to Pizza Hut for dinner at 5pm. He texted me at 5 til' 6 saying they are on their way back because she had just thrown up all over the booth, herself, him and the whole way to the restroom. When she had gotten home I asked her how she felt and she had said not good. I then tried to give her fluids and she was able to drink them ok. She asked for pizza and I didnt want to give it to her but I cannot tell her no when it comes to food. She instantly started to gag. When this happens it is time to get her cleaned out because she is so full of stool that food has no other option but to come back up.

I gave her the nightly routine of meds && breathing treatments && I did manual CPT because I did not want to give her the vest and cause her more pain. She started taking chills but yet is feeling VERY warm. (another sign that things need out).

I had called the on-call GI && here I wait for a call back!

I am going to go for now && TRY (keyword try) to get some sleep! I will update tomorrow as I know more!

Much love to everyone && thanks for all the support && prayers!

<3<3<3>

Bah Humbug!

Bennett && I were sitting here chit chatting while playing The Give Kids The World Version Of Candy Land.

Mommy -- "What do you want Santa to bring you for Christmas?"

Bennett -- "I want six sisters, one brother, a new doll, and a game!'

Mommy -- "So can your six sisters && your brother share your bedroom with you?"

Bennett -- "No, they can sleep in the garage, it has heat && we can take them food!"

Mommy -- "That isn't very nice Buggie!"

Bennett -- "Well Mommy you have my heart and I have yours!"

Awww that made me tear up! :0)


Okay -- Well I wish I had lots of good news to talk about! Bennett still isn't feeling very well! She has been on her TOBI for 24 days now along with 3 other oral antibiotics and it hasn't helped much. She has done a 7 day round of Zythromax, 20 days round of Bactrim && Just finished another 5 days of Zythromax on Monday.

I had her at the emergency room a few nights ago because she was having alot of pain in her ribs again and her breathing just wasn't right. The ER doctor said to continue with what Dr. D was doing and to call him or her CF doctor if she doesn't start improving.

Well this morning she woke up sounding very congested and full of gunk. Her nose isn't running though? She has a low-grade fever! When I have her blow her nose into a kleenex it is very greenish/yellow with hints of blood and she had an increase junky cough. So, I called and spoke to her CF Care Coordinator Judy && she said that her CF Doctor isn't in the office so another doctor is covering for him so she will speak to him and call me back. Well to my surprise Marie her respiratory therapist had given me a call back && said that Dr. Perez wants too see her in the office tomorrow at 1:30 && to pack her and I a bag! I am really nervous because she has never had IV Antibiotics or a PICC Line so I have no idea what to expect. From reading fellow CF Momma's experiences with IV Antibiotics it usually is around a 3 week stay in the hospital if not being allowed to come home and finish the IVs at home. Well tomorrow is December 1st and if she has to stay for 3 weeks that means she may have to have Christmas in the hospital. No Mother wants her child prisoned in the hospital for any holiday especially when Santa comes! Once Marie called my day has turned crappy. I cannot clear my head! I just want to scream or cry! I wish I could switch my babygirl lungs! It is time for my daughter to have a break. She has been sick straight for 2 1/2 months now! On a better note sorta, it seems like her intestinal issues are starting to work better. She has been going potty regularly! It isn't always hard. It is softer and she still has pain but I think thats normal! :0) Hopefully that means she is cleaned out! She has a GI appointment December 23rd for a follow-up from the change in her medications.

Please continue to keep her in your thoughts! I want nothing more than to have my babygirl at home in my arms where she is comfortable! x0x0

I am VERY blessed!

I Am Thankful:


First and foremost I am VERY thankful for my beautiful daughter that god has blessed with me. She is amazing and special in more ways than one! She is always smiling and happy no matter what her days are like. She is my world!


For the Cystic Fibrosis Clinic Team that takes great care of Bennett. Thank you Dr. Kinsey, CF Care Coordinator Judy Egly, Respiratory Therapist Marie Isenberg, Social Worker Diane McCurley, Dietitian Patti Chulock && the many nurses that work in the office.

For the GI Team that has been working extremely hard trying to get her issues figured out and fixed. They want to get to these issues figured out as soon as possible so she is not suffering anymore. Thank you Dr. Focht & his nurses.

For Dr. Dedeoglu, he is a very kind and caring pediatrician that doesn't stop until he gets good answers. He is always willing to help and ineract with her team of doctors in Danville who are over an hour away. The night she was born he called in every hour to check on her and was very concerned because she had meconium and from that moment I knew he was the best pediatrician for her. Thank you Dr. D for being the best pediatrician ever!

For ALL of Dr. D's nurses who truly love Bennett && try their hardest to keep her calm and happy while we are in the office! Carrie, Jennifer, Jennifer S, Nora, Dawn are all very sweet and caring. They know how to calm her down and reassure her everything will be okay! Thanks girls! (eventhough I got bit yesterday, J/k Carrie)

For the EMS team "the bitches" that we have had to call upon so many times for Bennett. They all are amazing && are wonderful! They were very kind on the transports from our home to the childrens hospital! Thank you for all that you guys and girls do! She may call you names but she is super thankful for all that you have done and will continue to do for her.

For the Emergency Room Nurses who love Bennett so much. As soon as they know Bennett is on her way or is in the ER they all come into her room and make sure she is feeling reassured that everything will be okay. They try their hardest to keep her pain free and happy while we are there. They also get yelled at and get sassed by her but she is also very thankful for everything you guys do for her! You take her fear into consideration and try your hardest to make her anxiety level as low as possible! Thanks!


For the very few wonderful people I call family! You guys are great! Especially Mark, Lisa, Chad, Andrea && Haley! You guys do so much for Bennett && I and I cannot begin to thank you enough! You guys are ALWAYS right there the second her or I need you guys! We love you guys so very much and are super thankful for all that you have and continue to do for us!

For all of my wonderful friends near & far! You guys are the greatest! I know you guys will be there at any hour of the day that I need you, even if it is just to talk! I know you all are a text or message away! Your encouraging words and support keep me sane in the roughest of time! Thank you!

For my amazing CF Family! You guys rock! Always to full of advice && support! Always willing to help in any way you guys can! Giving answers to questions and concerns that I may need! You all pull together and give me lots of information that I did not know about that helps with Bennetts medications and treatments! I would be so helpless without all of your support, advice and techniques! Thank you so very much! <3

For KaylaBeth Kreations for having Bennett as their sponsor child! For all of the things that you have and continue to do for her! They have given her so many great things too make her hospital visits and stays so much more relaxing and to keep her distracted. Also, this all wouldn't have been possible without Heather Duncan. Thank you KaylaBeth Kreations!


For being blessed to be able to stay at home with her! Being able to be a stay at home Mommy is the greatest job in the world. I do not want to miss one minute with her! She needs her Mommy and I am very very thankful that I am able to stay at home with her!


For my wonderful boyfriend Brad. He has been by my side through the roughest of times. He is the one that receives all my stress when I hit my breaking point. There are times when I take out the stress of CF on him and he truly doesn't deserve it but he is there to help && listen. He has been here for the past almost 4 years && knew coming into this that she was going to take alot of time and patience. He didn't ask any questions! He never complains or whines! I am very blessed to have an amazing and understanding boyfriend who loves Bennett && I unconditionally! Thank you Brad for everything you have done and continue to do for Bennett && I. I am truly blessed to have you in our lives! Bennett is a very lucky lil' girl to have such an amazing Daddy in her life! We love you!


I could go on all day long but I am going to go snuggle on the couch with my warrior princess && watch the parade!


Happy Thanksgiving everyone from our family to your! Sending love, hugs and happiness all the way from Pa! <3

Give Her A Chance

I have a child with special needs,
she is great yes indeed.
People may look at her in a different way,
but she's like any other little girl wanting to play.
She has Cystic Fibrosis, which she fights to breathe,
but she's still up for a nice long talk.
She likes to play with her puppy Libby, blow bubbles, color and play dress up.
But that is only some of the things that she likes.
At recess she walks with her inhaler in her hand,
it just takes her a little longer when the bell rings.
So please be patient and get to know a little girl named Bennett,
who wants to be loved so.
She is very sweet and loves to play,
so please give her a chance and don't run away.
She has feelings, just as you and I,
so please be nice and don't make her cry.
Try not to judge her because she cannot breathe like you do.
Just look at her heart and you both will have fun.
She doesn't look at you different or make ugly jokes,
because God gave her a special heart
and she doesn't want it broken.
So if you see it in your heart,
please let her have fun and be a part.
She's just a child wanting to play,
you can teach each other in different ways.
Just remember God made each of us different and unique.
I like green, you may like pink.
In God's eyes we are all the same,
so what do you say friend, how about a game?

Pseudo What? Pseudomonas!

Wow!, Where to begin... First off Bennett had surgery on September 28, 2010 to have her tonsils, adnoids and tubes removed! Which is typically an easy procedure turned into a nightmare and fight for her! I feel so guilty because it was my CHOICE to have them removed or leave them be! She had been having TONS and TONS of sore throats and ear infections so I opted to have them removed! If, I knew then what I know now, I would've chosen NOT to have the surgery! TWO days after her surgery she started spiking fevers between 105 & 106 with LOTS of pain in her rib care area! I took her to her pediatrician (well it wasnt her typical pediatrician) && he said it was viral that it'll pass in a few days to keep giving her tylenol for the fever. A week had passed and the tylenol wasn't breaking the fevers, they were starting to become more and more aggressive! I ended up having to take her to the emergency room on three separate occasions for IV fluids because she was dehydrated! One ER Visit she was diagnosed with a UTI and was told to call her pediatrician the next morning! So, I did as I was told and Dr. Dedeoglu did a urinalysis, bloodwork and chest xray. Everything looked great except for an elevated white count! -- At this point it has been 2 1/2 weeks of around the clock tylenol and motrin to keep the fevers under control and the pain at a minimum. They could not culture her throat due to her having her tonsils removed and they did NOT want to disturb the stitches incase they would knock them open and the infection would spread! -- Dr. D at this point was scratching his head along with Dr. Severs! -- Dr D. contacted the oncall CF Doctor whom ordered a culture! -- Well, it took a little persuading by me to get Dr. Severs to do it since he had never done one before he did not want to cause her any harm! But, he did it and it was done correcty without any harm done to her! Well the culture was taken on Friday. October 22nd and it took SEVEN whole days for the culture to stop growing and her CF Care Coordinator called me Friday the 29th and gave me the news that I did NOT want to hear! Bennett is growing a potpourri of bacteria in her lungs! I felt my legs becoming weak and my stomach starting to turn! This is the very FIRST time in 3 1/2 years that she has ever cultured anything! I felt so helpless and it was my fault for having her tonsils and adnoids removed! At this point she has been sick with a high fever, lung pain and dehydration for FOUR weeks and we finally have an answer. She is growing several different bacteria including pseudomonas! Dr. Kinsey put her on a high dose of Bactrim two teaspoons twice a day for 20 days and TOBI (an inhaled antibiotic) two times a day for 28 days! She started TOBI on November 3rd in the evening so she took one dose Wednesday, then one Thursday morning both doses she had slight complications. Thursday evening the 4th she took her 3rd and about 30-40 minutes after finishing the dose, she became to complain of chest pain, left arm pain and she was having trouble breathing. I immediately called the ambulance and they transported her to the ER. Her heart rate kept bouncing up and down! Between 118 && 162! They gave her a treatment of atrovent and it began to relieve her chest pain! But, before the ambulance took her from our home, she threw up a huge blob of mucous! -- She was released from the ER && her CF doctor called me the next morning telling me to stop the TOBI right away! So I did! We set up a time for her to do a dose of TOBI in his office under the supervision of the respiratory therapist. We agreed for her to go into his office after her GI Procedure Monday! -- We went up to the clinic around 1pm! They monitored her why doing the treatments! During the albuterol/pulmicort treatment her heart rate stuck steady around 119 and her O2 was 99%. But, during TOBI her heart rate was around 150 && her O2 was 92%. He said that the TOBI was working the way it needed to be and she should be fine! But, he wanted us to stick close another night at The Ronald McDonald house incase she had complications. So, that is what we did! She had no complications since that night the mucous plug broke off from her lung and got lodged somewhere until she was able to bring it out! -- She has only 8 more days on the bactrim but 21 more doses of the TOBI to take! -- Please pray that she is able to finish all 21 doses without any complications! And when she gets cultured on December 23rd that ALL the bacteria and pseudomonas are GONE! -- The one she cultured is VERY resistant to ALL treatments but sometimes TOBI can get rid of it with SEVERAL treatments! It is 28 days on and 28 days off! -- I believe I have you ALL up to date and hope to write weekly! <3>

A Much Needed Intestinal Update!

As you all are aware Bennett has been dealing with intestinal/bowel blockages/obstructions for almost a year now! Her GI Doctor has tried all that he can to keep them gone but nothing seems to be working! Since September her medications have increased -- 6 - 17 gram packets of Miralax, 3 tablespoons of Milk Of Magnesia, 4 Benefiber chewables and 3 tablespoons of Fletchers Castoria a day! -- In September we scheduled an AMOT which is a test that checks the pressure in her anus/rectum. She had that procedure done on Monday, November 9, 2010 && the results came back great. She has good pressure in that area and that isn't the cause of the blockages/obstructions. It is great news but at the same time it is bad news. Now, we need to figure out what our next step is! Dr. Focht decreased her medication a wee bit on Tuesday the 10th. She is no longer taking Benefiber and her Fletchers Castoria && Milk Of Magnesia have been decreased to two times a day! -- We spoke also about teaching her to swallow a pill that is large in size. He never told me the name of it, but it works a different part of your GI Tract! As we are in the elevator leaving his office on Tuesday, he calls my cell phone and says he has been reviewing her chart and it amazed at the amount of medications she is currently taking and wants to give her until after our trip to get regulated with the new doses of the medications. If she is not regulated by then, he is going to admit her and insert another NG Tube, to completely clean her intestine, bowel and the rest of the GI Tract out and start her on this new pill and not discharge her until she is having a regular BM pattern. Now this is the hard part! I have been thinking and I mean thinking hard about calling him and just asking him to put her in and clean her out and get her started on this new medication so she isn't suffering any longer! He said that she has enough problems with the other respiratory complications from her Cystic Fibrosis! -- Am I in the wrong for wanting to do it this way instead of causing her more pain and hurt?? <3

Celiac Disease

Well alot has changed since I last blogged an update! She was discharged from the Children's Hospital July 16, 2010, which was a Friday and by that next Monday she was FULL of stool and obstructions AGAIN after having an NG Tube for 3 days. When we left the hospital the x-rays showed that she was completely empty of blockages and hard stool. She was having pains yet she was going potty. So, Dr. Focht put her on some Fiber chewables along with the rest of her meds. She seemed to still be having alot of pains. August 12, 2010 she became having diarrhea and vomitting. I made an appointment with her pediatrician that Friday which was the 13th. He diagnosed her with having a GI Virus that was called a "Super Bug". It had vomitting, diarrhea and lots of belly pains which was only suppose to last 3-5 days in which it did. She was pain free, no vomitting or diarrhea for 2-3 days then it came back. August 24, 2010 I had to take her to our Emergency Department because the pain was getting more intense, she was unable to keep anything down and she spiked a fever of 105. The ER doctor did a urinalysis and it came back that her white count was really high. He gave her a dose of bactrim and told me she had a UTI to make a follow-up appointment with her pediatrician the very next day. Which I did. Dr. Dedeoglu reviewed the urinalysis results from the ED and ruled out a UTI and did a repeat urinalysis and had me stop the Bactrim right away. That night she had gotten worse so I took her to Mount Nittany Medical Center in State College that is 45 minutes away. Dr. Feese did an xray and yet another urinalysis. The results show another elevated white count and a large amount of stool through the colon and intestine. And sent us home. The very next day (Wednesday) I called Dr. Focht her GI doctor and explained to him what was going on and he immediately ordered bloodwork. I took her over to her pediatricians office for the bloodwork. And he told me that if the vomitting and lack of eating went on to take her to our ED for IV fluids so she did not become dehydrated. Her bloodwork came back normal. So, he then ordered an ultrasound on Thursday which the first opening wasn't available until the following Wednesday September 1, 2010 at 8:30. He wanted to look at her liver and gull bladder. She continued refusing to eat but she was still drinking (small amounts) Saturday evening she became vomitting in her sleep and running a fever. So, I took her to our ED for IV Fluids. We spent 6 hours in the ED because she was severely dehydrated. They ran bloodwork which came back normal. This is 3 sets of bloodwork that came back "normal". Monday evening she was playing Peek-A-Boo with her 7 month old cousin. While she was doing that she put a thick fleece blanket over her head and was spinning in circles, lost her balance and fell into my moms old fashioned radiator heater and split her head wide open. I had to call the ambulance because she was unconcious and was bleeding really bad. Well she ended up with 3 stitches, a concussion and major swelling and bruises of her forehead, eyes and nose. Wednesday morning September 1st we went for her ultrasound. I called later that afternoon and everything looked great, the gull bladder was in normal range and there werent any masses on her liver. Dr. Focht then ordered another xray. So since it was late in the day I had to take her the next morning which was Thursday. I took her early in the morning and then waited a few hours and called Dottie for the results. Well Mrs. Dottie was full of pretty bad news. While she was waiting on Dr. Focht to look at the xrays she was comparing the bloodwork and realized that Bennett was Celiac positive meaning she has Celiac Disease. So, now Dr. Focht thinks that with her having Cystic Fibrosis and Celiac Disease is why she is having so many issues with blockages and obstructions and is still obstructed. He wants to do a repeat endoscopy and 2 other tests. He thinks she also has incontinence. And if she does there is a possibility that it can be fixed with surgery. They are suppose to call me tomorrow with a day and time to have her in Danville to have these tests/procedures done then the following day we are meeting with Dr. Focht to discuss the results and what our next step is going to be. I am a nervous mess worrying about what is going to happen. She is suppose to start pre-school next week! She is really looking forward to it. She really enjoyed preschool last year. I will be heart broken if she doesn't get to start right away but then again I want her to get her treatment/surgery and her intestinal obstructions taken care of as soon possible! If anyone has any good Gluten Free recipes or knows of any kid friendly gluten free foods please give those to me so I can make her diet change as smooth as possible!

Inspiration

Bennett had a doctors appointment this morning, so when we got home from running errands and having her stitches removed, I check the mail. Well there wasn't any mail but there was an envelope with my name on it. I opened it up, it was a card. A beautiful card and it reads:

(outside)
They say
What doesn't kill you
makes you stronger.
Well, what if
you didn't sign up
for extra-strength training?
What if you'd rather
catch a few breaks
once in awhile?
Is that so much to ask?
At some point, you'd think
you'd be entitled
to a free pass or two:
Skip this challenge.
Avoid this crisis.
Delete those problems.
It's not that you're not strong
or that you don't have what it takes
to get through this.
You are, you do, and you will.
But, you've built enough character
already, and it's time
for things to lighten up a little!

(inside)
I know it's not really my call,
but if I were in charge
of life's wheel of fortune,
you'd get a free spin.
And I'd be right there,
cheering you on!

This is all it took to put a smile on my face and make me want to come out fighting stronger and harder than ever before! Mind you that I have NEVER met this wonderful angel before and she lives 2 blocks over (I believe). All I know about her is what is on her Facebook page and our little chats here and there. But, this is the 2nd time she has left me a pick me up in my mailbox and god it feels good to know that people believe that Bennett and I WILL pull through these challenges! My morning was very sad and I didn't want to crawl out of bed but I did. And now I am ready to butt heads with Cystic Fibrosis and Celiac Disease and show these devils who is in charge. It definitely is not them and they NEVER will take charge of our lives again! Do you hear that CF & CD?!!? You better be scared!

I'm not sure if she wants it known whom she is, but she knows who she is and I cannot begin to thank her enough for all that she has done for Bennett. She truly is a blessing and I am glad to have her on our side! Thank You Angel!

The Plumbing IS Working? Or Is It?

As you all my know Bennett has been having some complications with her intestine blocking since the beginning of February. I reported the belly pains to her Dr. Kinsey (CF) and he just upped her enzymes with no questions asks and also put her back on 3 packs of Miralax a day (she was on it as a newborn). A few months went by and she was going to the potty but it was mainly just liquid. March 31, 2010 I woke her up for pre-school and she couldn't get out of bed because the pains were so severe. She stayed home that day. Throughout the day she had gotten worse. She began to throw up yellow bile. So, I took her out to the ER. They did the normal bloodwork, chest xray and CATScan. The first results came back from the CATScan and the doctor has seen something show up on the scan so he wanted to do a repeat scan. Well according to him she had appendicitis. He called Dr. Wimsatt who is a surgeon and he refused to do the procedure because she has a lung disease. At this time they had decided to transport her to Janet Weis Childrens Hospital Emergency Department. They did an extra IV of antibiotics to get her through the hour transport. My mom rode in the ambulance with her. I followed behind with my nephew. It was the longest hour of my life. We reach the ED department in Danville. They reread the scans and bloodwork and had determined she had an intestinal blockage and NOT appendicitis. Dr. Kinsey (CF) wanted her admitted immediately. They gave her an enema the following day and didnt give her anything by mouth. She was on IV Fluids only. The enema worked for a small amount. 3 days later they sent her home and changed her enzymes to CREON 12000, 4 per meal and 3 per snack because he figured the enema cleared out the blockage. On that following thursday (discharged from the hospital Saturday before Easter) he wanted her back into his office because she did not have a bowel movement. Once we arrived at the office he wanted a TWEEN 80 Enema done. He once again changed her medicine. He put her on 4 packs of Miralax a day, her enzymes and now he wanted her to take 2 doses of Fletchers Castoria daily. Things seemed to have started working for the month of April. In May she began complaining of belly pains and it was days on end without a bowel movement. So when she went for her 3 yr old physical in April, I had asked Dr. Dedeoglu (pediatrician) his opinions and what he decided was to refer her to a GI Specialist. His office went ahead and scheduled her an appointment with Dr. Focht in Danville. Well, here is where it gets really scary. At the beginning of EVERY appointment we go over her medications and he was astounded at the amount of enzymes she was taking without being pancreatic insufficient. I explained to him that every time I reported to Dr. Kinsey that her bowels were not moving properly all he did was upped her enzymes. He decided he wanted to do a Miralax cleanout the following Monday. So, over the weekend I allowed her to enjoy whatever foods she wanted. Monday rolls around and I mix up the Miralax (an entire bottle) with a quart of gatorade, then began to wait and wait and wait. Well there was no results with the cleanout. I called his office and he wanted me to do 3 doses of Milk Of Magnesia. She drank that down like a champ. Still without any progress. So I called his office once again and he said that he could NOT do the NG Tube until next week. Well at this point I was fed up! It has been 5 months and she is STILL having a blockage. I decided to pack our bags, hop in the car and drive to the Emergency Department at the childrens hospital 90ish minutes away, I figured he had no choice but to do the NG Tube and fix my babygirl. THey of course did xrays, bloodwork and a CATScan which revealed that in 3 days the blockage had gotten 3 inches bigger. Dr. Focht was once again astounded so he immediately admitted her. We get upstairs to our room and the nurses put the NG Tube in. That was the worse 15 minutes of my life. Hearing my baby please and beg for me to help that they were choking her. My mom was with me and said that all the color drained from my face and I began to sweat. I had to step outside because I began to faint. They hook the fluids up to her NG Tube at 11:30pm. Dr. Maskimack (Dr. Fochts partner) came into our room at 6am and there was absolutely NO progress. It took a total of 10 hours to melt the entire blockage. Nothing started happening until the following afternoon. Friday, July 16 2010 they wanted to do an endoscopy and pancreatic stimulation test. The results from the endoscopy revealed she has a hernia and an extra small intestine from the mucus building up in it. Also, they took biopsies and 3 of the biopsies came back showing some abnormal, which I will not find the results out until tomorrow! An entire month later. Her pancreatic stimulation test came back AMAZING. Dr. M said that her pancreas makes beautiful enzymes on its own and that he wanted her CREON stopped immediately. That was a relief but scary at the same time because Dr. Kinsey should have NEVER put her on enzymes at age 8 months. She stopped the enzymes over a month ago and let me tell you her appetite has increased tremendously. She has gained 1 pound since being discharged from the hospital. She hasnt been feeling well for a little over a week now, She didnt have an appetite, throwing up, and liquid bowel movements, so I took her into the office and she has a super bug GI Virus. Also, something else is going on because she has absolutely NO color, dark circles and VERY short of breathe with alot of junk coming up when she is coughing. Okay, so I think I have everyone up to date. I am really nervous and scared to hear what the results are of these biopsies. Please pray that for once we get good news at the doctor. I want a clear xray of her belly showing no obstructions or blockages! Pray! Pray! Pray! Xo

"Real Love"

I found this poem on a very dear friend of mines Facebook page and found it to be VERY fitting for Bennett and every other child out there that is SPECIAL in their very own way! Thank you Kathy for allowing me to share this!


You weren't like other children, And God was well aware, You'd need a caring family, And so He sent you to us, And much to our surprise, You haven't been a challenge, But a blessing in disguise. Your winning smiles and laughter, The pleasures you impart, Far outweigh your special needs, And melt the coldest heart. We're proud that we've been chosen, To help you learn and grow, The job that you have brought us, Is more than you can know. A precious gift from Heaven, A treasure from above, A child who's taught us many things, But most of all- "Real Love"

Sooo Long Denial... Hello Acceptance...

I am writing this blog to reveal my hidden feelings that I have kept secret for three and a half year. It was just recently that I started to talk about Bennett and her Cystic Fibrosis. I thought I was protecting her by not talking to my family, friends & fellow Cystic Fibrosis patients, mommies & daddies but all I was doing was hurting myself. I know she is sick and just how serious this illness truly is but I never wanted to accept the fact that one day I may lose my pride and joy. She is truly a blessing from god. Before she came along my life was going in a rapid downward spiral. Then April 5, 2006 I found out I was pregnant. It was the happiest day of my life. Then I told her father the guy that I was dating for awhile that we were expecting and he had walked out on me for the girl he was cheating with. That was a huge kick in the face. I accepted quickly that I was going to be a single Mommy. Four long & stressful months had passed. I was happier then ever. I went to my prenatal visit & had some blood work taken. It was a Cystic Fibrosis screen. It came back that I was the carrier of H177R. I then contacted Jason explaining everything and he went and was test. He is the carrier of DF508. Once this was all confirmed I then had to go in for genetic counseling and a series of ultrasounds. She has indications that she was going to have Cystic Fibrosis. As soon as I had gotten home that day I sat down with my laptop and began researching what Cystic Fibrosis was. Each link that I clicked on gave me a different outlook on the illness. I had myself a mess and my mom demanded that I stop researching online and just wait until she was here and go from there. On November 21, 2006 at 9:32pm a beautiful babygirl was born, weighing 7lbs 13oz & was 20 inches long. She was perfect in my eyes. She was as healthy as ever. I didn't want to believe that my daughter had a terminal illness. I did everything that my doctors told me to do. I followed every piece of advice thrown my way. I kept asking myself "why my daughter" "why me" "what did I do wrong". It was taking a toll on me emotionally and I broke down and needed to go to my PCP for help with my severe depression. May 4, 2007 Bennett & I were blessed with an amazing man. He is the best thing that has happened to Bennett & I. I told him the day that we met about her illness & that is takes alot of time and patience. There are many hours spent in doctors offices and hospitals. That we live our life day to day not knowing what tomorrow will bring. He came into our lives with open arms. He never complains about complexity of what Cystic Fibrosis entails. God knew that he was what we needed to survive. His name is Brad. He has been by our side for 3+ years. What more could we ask for? He truly is a godsend. What guy & his family would openly accept a girl and her terminally ill daughter as their own with no questions asked? I would not be on the road to acceptance if it wasn't for the amazing support that I have been receiving through Facebook. A select few may think that is crazy. But, facebook has helped me meet amazing people that are going through the same daily struggles as I am plus it is allowing my close friends and family meet those people as well through my posts and give them a better understanding of what this disease is all about. Bennett is very welled loved from Pennsylvania all the way across the continent. I also am very glad that I decided to start a blog about our daily lives because it feels good to open up about Bennett and our ups/downs. I want to thank every one of my amazing friends near and far. If it wasn't for all of you & Bennett, I truly do not know where I would be. I definitely would not be beginning the "healing" process. I am very thankful for Bennett, Brad, my family & friends. I truly appreciate all the love and support you give to Bennett & I during the roughest of times and even there when we are happy to make sure our spirits are up!

Xo
Emily

Slowly Breaking...

Today is the 2nd full day in paradise. Lastnight was a major struggle for her. Starting at 5:45 pm her NG Tube decided "Oh I want to bleed", so it was dripping blood for about 6 hours on and off. She kept saying that it hurt. I kept getting the nurse each time it started back up & all she said was that is it trauma in the esophagus from it being inserted. Bennetts anxiety level at this point is sky high. At 6:30 she received a visit from 3 special four-legged furry friends. It brought a smile to her face. It was all she talked about for the rest of the night. Shortly after starting to eat dinner, which is the dinner of champs (jello, broth && apple juice) she began throwing up bloody mucous. This is what they were trying to avoid. She received a dose of Zofran and it worked instantly for a short while. By now she has had enough & began pushing her nurses call button every 10-15 minutes, when poor Brittney came in she gave her the 3rd degree & for a 3 1/2 year old it was filled with anger and frustration. She told her "tell my doctor its ok I go home, i dont want anymore shots or pokes" & then she proceed to demand her to remove the IV & NG Tube. I had to chuckle a little because it is pretty sad that she has had enough to the point of telling them what is going to happen. She asked me to snuggle in bed with her, so I hopped in her bed & held her tightly, rubbing her hair & i told her that Mommy will make it all better. I soothed her until she fell asleep. She didn't sleep very well through the night. She was up several times. At about 6:50 am she hit the nurse button and so Bernie (the dense airheaded nurse) came waltzing in and said "Can I help you" Bennett replied "Im cold", Bozo asked "why?" & what came out of her mouth next shocked me. She sat up & proudly said "Because I pissed the bed, now change it". Bernie just looked at me and didn't know what to say. They disconnected the NG Tube from the bag at 7am because she had the maximum limit that was allowed for her age/weight. Lab came in and drew some blood, followed by respiratory therapy with their gear. She then went down for an xray to see what the NG Tube had done. Well the x-ray came back and there was absolute NO change whatsoever! So, we are siting here waiting to hear back from Dr. Maximack to see what he is going to decide to do. They stopped all liquids as of this am because she has a few procedures coming up at 1 oclock. One of the tests are too see how the pancreas is working and what shape it is in. Dr. Focht doesnt think he ever needed to be on the enzymes that her CF doctor put her on at 8 months old. & If that is the case then whatever damage is done to the pancreas could have been prevented. She is resting comfortably at the moment. She fell asleep about an hour ago & I am not waking her until they come to get her for the procedures. I will fill you all in again tonight. This is the complete update from lastnights blogs until now! Take Care!

What Is Cystic Fibrosis..

For the people that are not very familiar with what exactly Cystic Fibrosis is:

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

• very salty-tasting skin;
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is more than 37 years.

The Cystic Fibrosis Foundation

Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

• Learn more about Testing for Cystic Fibrosis.
• Explore all aspects of Living with CF at every stage of life.
• See what Treatments are available and what’s in development.

Day 1

Well today has been a very trying and emotional day. They put the NG Tube in around 9pm last evening and started the meds at 11pm. She slept the entire night through with the help of an anxiety medication. Dr. Maximack came in around 6am to check on her and at this point the medication didn't start to work. So, he said he wanted to up it to three ounces an hour. At around 7am is when it started to work and particles mainly liquids were being produced. So, about every 30 mins she was going to the potty. This lasted maybe 3 hrs then things stopped. She only drank a few ounces of apple juice and had a few bites of jello. She took a nap from 2pm til 5ish. The doctors arent very happy that the liquid isn't getting clear. Its more green. They do not want to give an antibiotic because it can cause the infection to get worse. They brought her dinner in and she ate all of her jello, 2 things of chicken broth & an apple juice. She started having lots of belly pains and they cannot give her anything for it at this point because of the procedures she is having tomorrow. She broke out of her room and wanted to play so they closed down the playroom for her since she isn't allowed around other children here. While she was playing her NG Tube started bleeding through her nose. It has been bleeding for 4 hrs and they are unsure why. Right now she is resting fairly comfortable with slight pains in the nose and alot of pain in the belly. I am hoping that tomorrows procedures give us positive answers. I am going to hop off of here and relax with her until she falls asleep! Please keep the thoughts and prayers coming! They mean alot! Until tomorrow....

Intestinal Blockage...

Bennett has been experiencing intestinal/bowel blockages since February 2010. Her Cystic Fibrosis doctor wanted to toy with her medications too see if that would help. He upped her Miralax from 1 1/2 packs a day to 3 packs a day and also put her on Fletcher's Castoria ( liquid laxative). It seemed to have worked for about a week or so then she started having more & more belly pains. So, I took her to Lewistown's Emergency Department on March 31, 2010. They ran multiple tests & several CATscans. They determined it was appendicitis so they transported her to the Children's hospital for surgery. When we arrived to their Emergency Department they re-read all of the tests and realized it was an intestinal blockage. They immediately admitted her. They gave her a Tween 80 Enema & once again changed her medications around & after 5 days in paradise they sent her home. Things were going along pretty well! Then out of nowhere she started having severe pains again. I called her CF doctor and he referred her to a Gastrointestinal Specialist. Dr. Focht suggested to change her diet a little. They took an x-ray & her intestine looked a mess. He called me Friday evening the 9th & had said he wanted her to do a Miralax clean out which involved drinking 119 grams of Miralax mixed in a quart of gatorade. She did that on Tuesday morning and nothing happened, so I called him back and he said to have her take 3 tablespoons of Milk of Magnesia. She took those like a champ & once again we have NOTHING! That night she was in a tubby of warm water and started throwing up. Which scared me because it was green foamy stuff. I called him Wednesday morning & he said that he couldn't see her until Tuesday of the following week to re-evaluate her. So, I reluctantly agreed and hung up the phone. Well within the hour she started to spike a fever & I immediately put her in my jeep & drove the 1 1/2 to Danville's Emergency Department. By now she hasn't eaten anything since about Sunday evening and stopped drinking Tuesday evening. We get to the ED down here. They took yet another x-ray and within the hour we had a room in paradise. They started IV fluids to get her re-hydrated and inserted an NG Tube through her nose and into her belly. That procedure was the worse thing I had ever had to struggle through. She was coughing up blood and begging me to help her because she was choking. My mom said that I lost all color in my face and I started to sweat. She had noticed I was shaking and started blacking out so I had to walk out and get fresh air. I prayed to god that I never have to go through this again or my babygirl! Well I think I have everyone up to date so I will do another blog for our 1st day in paradise with another intestinal blockage!