Hope 4 Delaney

Hope 4 Delaney

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A Healthy Bean and a sick Momma

Posted by hope4delaney on February 26, 2010 at 5:11 PM Comments comments (2)
:DHello Everyone!!
We hope you are all helathy and enjoying life as we try to do eveyday.  We are really sick of the snow right now...major cabin fever in this house.
We had a very sucessful visit with our CHOP Team on February 2nd. As usual, ALL of Bean's docs found time in their busy schedules to stop in and say hi to Laney and chit chat with Bernie and I. What a wonderful group. Really, aside from caring for Bean, they care for us too.

So Delaney was given a "test run" with a chest PT machine that enables us to free up mom and dad wrestling matches while we do chest PT manually. SO she puts on the vest, tubes attached and the air fills the vest. Then the shaking starts....the machine serves the same purpose as chest PT, to help break up the mucus in her lungs that she otherwise  couldnt get out herself.

Bean was okay with it, her docs were okay with it......so we figured, we'll give it a shot. Docs were thrilled with her progress. She continues to maintain a very good growth curve and is very intelligent. They were amazed that she spoke so well, knew her ABC's and could take her meds by hand (CREON capsules and meds by syringe)

She is VERY stubborn but independant. Tell her NO and not to do something and its like you just granted her permission to do what she's not suppose to do......i hope that made sense. We came home with a great report, and the okay for visits every two months!!! THRILLING!!! Thats huge especially with all of the germs and stuff that linger this time of month. KNOCK WOOD!!!! Bean has been doing very well.

She wants to do EVERYTHING herself; EVERYTHING that her big sister does too!!  Including, dressing herself , bathing, going on the potty, eating, talking to her BPA and BMA on the phone (or anyone that will listen to her ) and even put movies in the DVD player. She has no problem telling you what she wants and when she wants it. Shocker......that's the jil in her :D

She really loves all foods but we experience the occasional "Uck" with stuff. Her favorites this week are Fruit Loops (or as she calls them Loopy Loops), fruit (strawberries, grapes and blueberries), peanut butter and jelly sandwiches and "new-new's" which is pretty much chicken noodle soup with the broth drained out and of coarse Chef Boy R Dee ravioli's (or as she calls them OH Li OH Li OH's). She loves to play with her kitchen, ALL books and her My Little Pony playsets. She also has a talking purple puppy made by Leapster called Violet that she just adores. Its so cute to sit and listen to her having a conversation with this purple puppy.

The second annual event to raise funding for the CF Center at CHOP was another huge night, but not without some major issues. Aside from the Nor'easter that settled into our area dumping nearly two feet of snow, I (Bean's Mommy) was taken to Cooper Trauma Center after becoming violently ill on the 3rd of February.  I was eventually diagnosed with a CHIARI MALFORMATION which is a condition where the cerebral tonsils and basen(cerebelum) of your brain outgrown your skull. It has no place to go but down. Mine fell below the base of my skull and were putting pressure on my spinal cord and brain stem. (Which would completely explain a variety of symptoms I had been experiencing since May of 2009)

 I remained in Cooper Hospital until brain surgery was performed on February 11th.  It was a very long stay away from my girls. I had a very emotional time with it as im sure you all can imagine. I remained in intensive care for about two full days and then remained on the neurological floor until I was discharged on February 17th.   SO, i missed the event, and was devastated. BUT - with tremendous support  and the hard work of my fantastic sisters, Amy,Ryann and Jodie, they raised over $10,000 in just one night!!! AMAZING!!! 

 My recovery is coming along slowly and there are still things im not allowed to do. (drive, pick up my kids, exercise (i can walk), a few others that escape me and DRINK WINE!!!) i soo could use some wine, but at the moment the thought makes me sick. Today wasnt a good day. Yesterday was a good one. Its just going to be a one day at a time thing, i guess.  I wont get into details of the procedure but just say that i am healing and will hope to return to work within 8 weeks.

We are getting by one day at a time, but, it is extremely difficult from being very active one day to doing nothing and letting my brain recover the next. Granted the rest is nice, and healing my head makes me a better mother, but its really hard to do.

Hoping tomorrow is better than today. Thank you to our sponsors, family and friends for a sucessful event for an amazing organization. 

All the Best,

Bean's Mommy

 

Bring it on Mother Nature!

Posted by hope4delaney on November 24, 2009 at 1:07 PM Comments comments (0)

Yup. I said it. BRING IT ON MOTHER NATURE!

 

I figured we would take a new appraoch to the winter months. Yes we hibernate. Yes we are cautious with visitors and plan our outings with a bit more caution.....but WE will not fear you! WE will be ontop of every little sniffle and chill, because that is how we'll win. Dont think for a second that we'll be giving you any chance a pulling a fast on on us.......not this year! Hopefully never!

 

The fall months have been fun with the girls. Riley LOVES school. Shes doing really well in kindergarten and really enjoys the new friendships she has made along the way.  Delaney isnt so happy about school......only because she can't go!! She gets sad when Riley isn't around. She asks for her thoughout the day and responds with a simple "oohhh" when you tell her that riley is at school. Cute but a little sad too. She misses her big sister. When we pick her up, Riley is greated with a big smile and sometimes a squeal of excitement from Laney. Its funny. 

We just need to figure out how to capture this friendly playfulness between the girls and keep them that way. For as often as they are playful and happy with each other.......boy can they fight!!! Yes, these two little girls are divas (i have no idea how that happened......) and they fight over things.....all kinds of things!!!! Mostly Laney fights with Riley because she thinks she can do everything Riley does. Follow Riley everywhere she goes....this aggrivates Riley to no end!! Which now gives Mommy and Daddy major anxiety or heart palpitations......she just doesn't get that she isn't as big, strong, coordinated at her BIG sister.......and she will not settle until she does (or comes close to doing) what the BIG girls do.  Its entertaining to say the least. The temper tantrum when you try to help her that ensues is even more entertaining.   ahhhhh.....this is the payback.......awesome.

 

So Laney is adjusting to the toddler phase pretty well.  She takes her enzymes by the handful and just swallows them whole. Yes.......swallows the whole capsule....actually 4 of them with each meal.....sometimes add another capsule (for her prilosec) and the other meds.....its alot. Needless to say, she has yet to give us a problem with her medication.  She likes to hold her neb while she's doing her breathing treatments. She does "deep breaths" and actually will inhale and exhale numerous times throughout the treatment. Her chest PT is also going rather well.  We call it "pat-pat". Laney will take her percussors and pat them on her chest as if she were helping. Sometimes she will even give mommy or daddy some "pat-pat". Its funny how receptive she is with all of this. I figure its because she doesnt know any better, any different......fingers are crossed that it remains manageable and she is cooperative.

 

Delaney remains at her "baseline".....the best she can be, which makes us happy. 

She is currently taking the following medications daily:

 

Creon - 4 capsules with meals, 2 capsules with snacks

Vitamin ADEK - .50 ml twice day

Vitamin K - 1/2 tablet 5 days a week

Prilosec - one capsule twice day

Miralax - 1 tsp twice a day

Bethanocol - 1 ml 4 times a day

Pulmozyme - neb. once daily

chest PT 2-3 times daily (15 minutes each time)

 

We are looking forward to the holidays and will attach more pictures for everyone to enjoy. 

We hope everyone remains in good health and has an enjoyable holiday season.

 

All the best.

 

Bean's Mommy

 

 

 

 

 

Summer Fun

Posted by hope4delaney on August 27, 2009 at 7:44 AM Comments comments (0)

I hope this entry finds everyone healthy and enjoying their summer. As we get close to the end of the season, i figured i would update everyone on all of the things that have been going on with Bean and the rest of us over the past few months.

The summer has been really enjoyable! We have taken full advantage of swimming at Bma and Bpa's pool and i think we have another fish on our hands! Laney LOVES LOVES LOVES the pool. She has no fear (like all toddlers) and would just walk right into the pool with no worries! Scares the be-jesus outta me! We have to watch this little one like a hawk with most things though, she is very very observant and curious. 

 

Bean met the Atlantic for the first time and liked it so much. We actually couldn't keep her out of the water! Everytime we would carry her out, she would turn right around and RUN right back into the surf.  We enjoyed a family vacation in Ocean City NJ. The girls played in the surf and sand then enjoyed nights on the boardwalk. It was an awesome time. From the looks of the pics, i think they'd agree!

 

 

 

Her vocabulary has increased. She says mama, dada, ra-ra (riley) lolli (lollipop), ball, nana (banana) pop-pop and of coarse NO....... she even has the head shake down too. makes for an enjoyable standoff when it comes to things little miss bean doesn't want to do.

 

She loves music. She will stop what she is doing if she hears a catchy tune and start shaking her little tush. Sometimes we are fortunate enough to get a little singing out of her....well, what she believes is singing. its the cutest thing. She definately gets that from shadowing her big sister. Riley is always dancing and singing and doing cartwheels all over the place. Laney WILL NOT LEAVE HER ALONE!  Riley has been as patient as a 5 year old can be. She's doing a great job being the "mother hen " when Bernie or I are pre-occupied for five seconds.

 

Bean continues to have a healthy appetite. She is on whole milk four times a day but pretty much eats everything we eat. ( she gets up to 18 enzymes a day. We spead them out over the day because of her snacking and stuff but each bottle usually gets 3-4 depending on what she eats with it) She still really likes cheesey shells and yogurt but has taken an interest in pizza now. BUT - she has to now eat how everyone else eats, especially her big sister. Laney holds a slice of pizza like everyone else (smaller of coarse) and is just so so proud of herself. She seriously thinks she is a big girl too. This little one is stubborn but so focused and persistent. UGH......its exhausting!

 

We had a nice turnout for our fundraiser at the Riversharks game on Saturday August 22nd. We raised $640!!! COnsidering the weather was terrible, I am getting great feedback from those that braved the storm. This is  a video of Laney being recognized on the field before the start of the game. It was super cute. She danced a little and clapped her hands. Even blew a kiss to the crowd! I tear up everytime i watch it.

View this montage created at One True Media
My Montage 8/24/09

 

We head back to CHOP on the 1st of September for a check-up. Keeping our fingers crossed for clear airways and an increase on her growth chart. I hope everyone enjoys these last few weeks of summer and has a safe and happy school year.

 

Love-

 

Bean's Mommy

 

How Time Flies

Posted by hope4delaney on May 31, 2009 at 9:55 PM Comments comments (0)

Well, here we are. One year later. May 9th, our little bean crested the one year mark as strong as ever! Hopefully, this is a sign of wonderful things to come.

We celebrated the day at the Philadelphia Zoo for the Great Strides Campaign for CF. It was a gorgeous day and we had the support of a large group of friends and family. We are so blessed to have such an amazing support system. We were able to enjoy the animals and the sunshine before heading back to Bma and Bpa's house for the celebration!!

Lots of smiles and laughter filled the air that gorgeous afternoon. Swimming, bubbles and cake consumed our day as we cherished one of many birthday's with our bean.

She remains at her baseline after a bit of a cold in the beginning of summer. She has transitioned off formula and is drinking whole milk. Bean loves to eat nutri-grain bars, mac n cheese, pancakes (with extra butter), chicken nuggets, french fries, cheddar goldfish and jello pudding. Each day we try to introduce new things to Delaney's diet so we can continue to maintain the 50% or better on her growth chart. So far, we have done well. Bean weighs 20 1/2 lbs and is following a steady curve on her growth chart.  (right around 49%)

Laney now faces forward in the car which is more enjoyable for her and mommy and daddy.  Now we can see what she is laughing about. Her cheery face and silly giggles make all car rides enjoyable. She really has taken interest in the DVD movies that her big sister Riley likes watching.  Whenever we aren't watching a Barbie DVD, we'll watch Blues Clues. That seems to have her interest right now. She hold her own bottle when eating and enjoys drinking juice out of a sippy cup too.  Drinking from the sippy makes supplementing her salt and other meds easier for us. Instead of everything going into bottles, we can spread things out a little more as she continues to drink and snack  throughout the day.  Enzymes are still the same (4) with each "meal". Sometimes we'll have one enzymes if its a heavier snack.

She continues to babble. Sometimes we wonder who she is talking too. She points to things and says "whats that" and says dada all the time. Even when I say mama, she says dada......i guess we all know what that means.  She is learning sign language also. She has mastered "please" and "more".  We are working on "thank you" and "play". She blows kisses and waves bye bye, puts her hands up in the air and says "all done" when she's had enough to eat.

Riley now has a shadow. We warned her that the day would come. For her it was around 10 months. Laney has been mobile for a few months now and is even pretty quick for having such short chubby legs. (thats the mommy in her.) Everywhere Riley goes, Delaney wants to go. Everything Riley has, Delaney wants. And so the drama begins...though we were hoping to have a little more of a break before it started...again, we dont have that type of luck

After typing everything, i realize how far we've come. There is still so much more i could go into detail about but would rather save some for my next post.  It has been a learning year. We are understanding the disease, the progression of it, medications and environmental influences and so on. Most of all though, I think we have learned to love more. Love each other more. Be thankful for today and look forward to tomorrow. Everyday presents a new adventure for us, and we are now looking to take it in stride....one breath at a time.

 

And the battle continues....

Posted by hope4delaney on April 9, 2009 at 9:23 AM Comments comments (0)

Well, things have been okay.....After the RSV battle and the return of TEAM BEAN from the completion of the Disney Princess 1/2 Marathon, things were starting to look up. Delaney conquered the RSV and was back to her baseline. She continues to surprise us with her strong will and eagerness to do EVERYTHING!! (including all of the things she is not suppose to do...like open the cabinets and help herself to Riley's barbies.....that goes over real well.....) Delaney is not only walking all over the place, but now finds it funny to RUN from us. She tries so hard to move faster than her chubby little legs will allow, giggling the entire time. This usually happens when we catch her doing something she is not suppose to be doing. She definately keeps us laughing. She is also interested in table food. She really enjoys pancakes (of coarse loaded with butter) chocolate donuts, graham crackers, nutrigrain bars, and mashed potatoes. Anytime we sit down for family dinner, Laney is right there with us, experiementing with whatever we are eating that night. Its really funny to see her reaction to the different textures and flavors of things.  Hopefully she doesn't develop a bland sense of taste like her daddy :D. (That would making cooking twice as difficult)

 

After Riley finished up her second bout with croup in two months, Laney started with the groggy, runny nose, loss of appetite. We thought we were again, facing a battle with the bean. With the guidance of her pulmonary team a CHOP, we have again upped her PT and treatments to 4x's a day, hoping that this will clear any mucus that is trying to lay in her lungs as a result of a cold that is hanging around. It seems to be working though. She is still not herself completely but isn't worse. That's good enough for me today! We'll continue to do extra treatments and PT until we see a marked improvement. A visit to her pedicatrician yesterday was a good one. Lungs are crystal clear!! Weighing in at 19 lbs 11 ounces, our bean is on her way to (hopefully) a healthy spring! The lingering cold will be fought the old fashioned way this time. NO ANTIBIOTICS!!! Laney has had such a high amount over the winter that we and her docs are fearful of a tolerance or sensitivity building to them. If we can win this one without the meds, we'll be much better off.

 

 

 

 

One Less Princess in Disney

Posted by hope4delaney on March 2, 2009 at 1:07 AM Comments comments (0)

As sad as it is for me to post this, i have to keep everyone updated.  After our visit to the pediatrician on Friday, it was determined that Delaney is too sick to travel with TEAM BEAN to Disney for the Princess 1/2 Marathon. We spoke at length with her doctor about the progression of RSV and Laney's current treaments.  Though the RSV is still in her system, and could remain there for weeks, her body is very weak and her immune system is drained. Her lungs remain clear and her pulse ox is up, though she still has a cough from time to time. These are all good signs that her body is fighting the RSV and it is not progressing into something more serious.  Should Bean become exposed to something while we are away, this could result in a hospital stay for a very serious bacterial infection ontop of the CF and the existing RSV. So, laney and daddy will be sitting this one out. I have been very upset and disappointed that neither of them will be there to greet me at the finish line, as i  played over in my head time after time.  For all of the sad or difficult times we have fought through with Delaney over the past 10 months, we were really looking forward to a week away from it all. To be away from home, with the girls, in a magical place was an opportunity for us to have fun, happy and unforgettable memories.  We really needed that. But, sadly enough, it wont be happening this time around.

we appreciate all of the prayers and kindness everyone has shown. The support and encouragement is what gets us through the hard days.

Riley and mommy will be traveling with TEAM BEAN and are looking forward to celebrating with Daddy and Bean when we get home.

 

One Less Princess :(

Posted by hope4delaney on February 28, 2009 at 5:23 PM Comments comments (0)

To think we would have a little luck was wishful thinking. We're delivered with bad new at the ped visit on Friday. 

Delaney's lungs are clear and her pulse ox is strong BUT.....her immune system is entirely too weak to risk exposure to a secondary infection.  Her little body is fighting the RSV (the disease could linger in her system for months) and any chance that she gets sick while we are away is too risky for her little body.

She is on cefzil, an antibiotic to treat whatever secondary infection she has going on besides the RSV, probably more preventative than anything else. Her chest PT and treatments are up to 4 times a day now because she is still coughing a wet cough from time to time and we dont want anything to settle in her lungs.

So daddy and bean are sitting this one out. I have very sad to not be sharing this accomplishment with Laney and Bernie in person, but know that this is what is best for her. Riley and Mommy will be joining TEAM BEAN in Disney for a few days, but will be thinking about Bean and Daddy non stop.

Race Day is March 8th at 7am. Sunny and 80 degrees for the run. Looking forward to an emotional finish with my incredible support standing there by my side.

Playing catch up

Posted by hope4delaney on February 26, 2009 at 4:49 PM Comments comments (0)

Well, here i am. Finally getting five minutes to write about the last few months with bean.  The winter has not been kind to us.  The christmas holiday came and went without any big illnesses. Delaney loved everything about the holiday. The lights, the wrapping paper and all of the new things to play with. Even her big sister's things!! We experienced the first of many crying bouts when Delaney was wrestling a doll out of her big sister's hands. Both were crying. We, were laughing.

Outloud..... 

 

Delaney is now mobile! She crawls everywhere and has even been bold enough to take up to 8 steps by herself!!!! She'll stand up unassisted and take steps towards whatever it is that she wants at the moment. At only 9 months, Bernie and I have our hands full with this little girl.  She is very determined and focuses on things very well. It is amazing how she has picked up on things so quickly. We figure that is just a sample of the life this one is going to live. She says DA-DA and MA-MA and knows who is who when she is saying it.   Two teeth on the bottom make experimenting with big girl food a litle easier for Bean. She is starting to get used to the texture of different foods. At first, she would spit out anything that wasnt smooth like her baby food, no matter what it was! Now she enjoys nutrigrain bars and pancakes (extra butter too . . . lucky duck) peaches, graham crackers, mac n cheese, spaghetti and meatballs and so on. Pretty much anything we eat, besides the common things babies cant eat before one year of age, Laney eats too. With CF, she is allowed the high fat and sodium in her diet because of her need to gain weight and take in added salt.  Some snacks dont require enzymes, but if she eats a heavier snack, we'll have to give her an enzyme or two.  

 

The last month has brought some sickness to our little bean.  She had at least 4 weeks of augmentin due to respiratory infections.  With the sickness, chest Pt and breathing treatments increase up to 4x's a day. On top of all the other meds Laney get, it makes for a very busy day. Its time consuming and worrisome, but we do it anyway. Its what we have to do to enjoy our little bean for as long as we possibly can.  With the passing of this last week in February, Delaney had yet again become sick.  Riley had been sick with croup and was out of school for a week.  Disinfecting the house and all toys werent enough this time around. Our little bean now has RSV. The virus is dangerous for any baby, let alone one with CF.  We are back on anti-viral medication (cefzil) along with 4x daily treatments.

 

Needless to say, managing the medications and daily treatments has left little time for Bernie and I to do things around the house or for ourselves.  We're managing though. One day at a time.  So as it stands now, we see the doctor tomorrow. We are hoping that Laney's lungs are clear and the RSV has not progressed into a bacterial infection. That would mean a hospital stay for treatments. if the doctor says we are on our way to recovery, we'll look forward to our Disney trip as scheduled. Keeping our fingers crossed for a Magical time in Disney.

Dr. Visit - Update

Posted by hope4delaney on January 5, 2009 at 9:58 PM Comments comments (0)

Well, Laney and I went to the doctor the other day for her monthly RSV shot.  Laney gets weighted every visit prior to getting her shot so that her dosage can accurately be determined.  To my surprise, Laney weighted in at a hefty 17lbs. 3ozs.  It was such a relief to see that Laney had gained weight even though her appetite has not been the same since she was put on Augmentin after the Amoxicillin did not help with her cold and ear infection.  Unfortunately Laney's ear infection did not go away, it just changed ears.  At the prior visit the doctor mentioned that if we continue to have problems with her ears we might be heading to an ear, nose and throat specialists, as if Laney doesn't have enough doctor's in her life already.  So we're keeping our fingers crossed that we can avoid that appointment. 

Now the nurse comes in and breaks the news that Laney is not only getting her 2 RSV shots but also needs her second flu shot, so my poor Laney Bean got 3 shots.  Although she cried, she seems to be crying less and taking less time to console after her shots. 

We're coming to an end now on her Augmentin and she seems to be doing better as far as the cold and ear infection are concerned.  Now for the walking stage....Laney wants nothing to do but walk and move around.  She no longer is content with just staying in one place other than to sleep and that's only because she can't get out of there yet.  It's amazing to see this tiny little girl standing with a huge smile on her face.  Not only is she standing she is walking while holding onto a small shopping cart.  And as if that weren't enough, she now takes her hands off the cart to see if she can keep her balance on her own.  And after about 10 seconds she gently sits down when she loses her balance.  Each day is a learning experience for all of us including her big sister Riley who now knows she can't leave anything lying around now that her sister isn't going to get a hold of.

Bernie

Merry Christmas

Posted by hope4delaney on December 27, 2008 at 8:48 AM Comments comments (0)

Hope this message finds everyone enjoying their holiday.  We had a very exciting christmas. Riley and Delaney both were excited over the presents that santa left under the tree. Believe it or not, Laney actually ripped open presents and was playing all morning. 

She is now starting the "cruising" phase. Its the very early stages but its really funny to watch her standing and reaching for toys to walk towards.  She is still so tiny to be up on both feet and trying to walk.

We are battling the winter colds like everyone else.  Bean finished up 14 days of amoxocillin right before christmas due to some congestion and an ear infection.  The day after christmas we were back at the doctors for an ear infection in the other ear and even more congestion.....ugh! so now its 10 days of augmentin and additional chest PT/meds. So, as frustrating as this is for us, this is the hand we were dealt and we will manage.  Its funny how you overlook the little hills now.  Things just dont seem to be such a big deal anymore when you deal with a sick baby. 

As for Team Bean........New Jersey weather is horrible for training.  I am not a cold person. At all.  I really dont like when the weather is below 60. However, i stay in jersey for other reasons of coarse. So, running when its 20 degrees outside has not been fun. Ive taken to the treadmill at the gym for a few short runs but plan on venturing outside as much as i can.  its painful!

We are planning on renting an RV for our travel to Disney for the run in March.  We cant take the chance of traveling on an airplane with the baby. (they recirculate the cabin air, so its germ heaven.....) so the plan is to leave early Thursday morning and arrive in Disney sometime Friday. The run is Sunday so we have a day or so to relax.  Then our plan is to go to Fort Wilderness for a few days with the girls before we drive back home.

Hopefully, this plan is the one that will happen for us. But then again, we dont seem to be so lucky. Keep your fingers crossed.

 


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