Mommy For Madeline

Culture Results....

2012-03-21T10:23:00.001-04:00

It's back.....PSEUDO.

It's brought us all down, thrown our emotions all over the place, and has conveniently found a place to hide inside of our little girl's body for a LONG time. It's creates that possibility that it could further damage her lungs over the long term if it doesn't stay managed....

It's emotional. It's frustrating. It's difficult to accept. But it's still there.....

This beast has decided that it doesn't want to leave. Madeline is now "colonized". This meaning that the pseudo is here to stay and it is not likely that she will ever get rid of it completely. The best option we have is to manage it. (Apparently it can go into dormancy through negative cultures but still be present' like last culture). Madeline's pseudo will be managed with inhaled TOBI (inhaled) every other month adding 30 minutes extra to her already hour long treatments both morning and night.(like we have done) Through 3 different inhaled antibiotics, oral antibiotics, and IV antibiotics (2 week hospital admission) my little girl has fought so hard and bravely against this nasty monster for 2 years with relentless medications, procedures, and antibiotics to kill it off....

But the one thing that keeps us going through all of this is that she looks and acts healthy.

She has maintained a great weight (which is very hard to do if you have CF). Most cfers have difficulty keeping enough weight on since they require countless pills every time they eat to help them absorb the calories and fat from their food.

Her BMI (body mass index )has remained in the 70-80's range for the past 2 years since culturing pseudo.

She is a heavy, chubby three year old at 36 pounds. Her weight has never been affected from Pseudo.

She shows no signs or symptoms of Pseudo being in her body and NEVER has. She has no cough. She can run for minutes on end without stopping to catch her breath (often something cfers have a hard time doing-especially if they are culturing bugs for years).

She has an amazing amount of energy- that I cannot even keep up with and always has. She rarely stops to rest and skips naps at times. She loves to run through shopping malls, and Targets. Her favorite hobby is jumping. She is simply unstoppable.

Her lungs look amazing in the pictures they took from the bronch while she was hospitalized. They have not found any pockets of significant mucous or infection. Her lungs have always sounded completely clear in the last two years. She has never show wheezing or been out of breath.

In fact, no would be able to tell she has Cystic Fibrosis from the outside. Everyone continues to raise their eyebrows in disbelief that she is flourishing despite this beast....

She has surpassed all of the goals that most cfers set to achieve.

Good weight.

Good energy.

Good looking/sounding lungs.

And if anyone thinks that this Psuedo has taken hold of her...they are wrong.

In fact, it is quite the opposite.

Pseudo may still be making it's presence known. It may be there to stay. But it will NOT win.

And if my little fighter has anything to do with this battle, she will do her best to keep it that way.

Someday....she won't have to fight so hard. Someday she may have a cure. Please donate today.

Click here -----> http://www.cff.org/Great_Strides/SandyAndJackLong

Upcoming CF Clinic

2012-03-12T13:35:00.003-04:00

We will head back to CF Clinic for a follow- up on Wednesday. Madeline will get a full check up
followed up a throat swab (culture) to see if Pseudo has decided to grow back or stay away for awhile. We are very hopeful that the beast is gone and will leave Madeline alone for a bit. But of course, there are always worries with CF.....

Our first negative throat culture for Pseudo in over a year came last month. We do know that Madeline had her IV pulled (antibiotics were completed that day over 2 weeks) when she got a negative culture. It seems appropriate to think that the Pseudo did indeed die off from those 2 weeks of antibiotics....but the question still remains...Did a bit of it stay in there and did it potentially grow back?

This is a question that a lot of cf parents/families ask: When you culture Pseudo , treat it with antibiotics, and get a negative result is the Pseudo really completely gone? This is sometimes the million dollar question. We have had some doctors, parents, and medical staff say that No, it cannot all die off. Pseudo just remains dormant and has the possibility of flaring up in months or even years. So even though you may not culture it, there is a chance it is still in there. Others say: Once you get rid of it with many negative cultures in a row (usually 3) it is usually rid from your body.

Looking at Madeline I would think that there is no way possible Pseudo is in her system. She weighs nearly 37 pounds now at 3 years old. She has been gaining weight incredibly well and, she has chubby cheeks to prove it. Her energy is great and, she has no cough. She simply acts and looks amazing but, we also know that CF doesn't always show every side.

This culture will explain some of this- but not all of our questions. It is true that most clinics like to see patients that have 3 or more negative culture before they declare their cf patients "officially Pseudo free."
We know that we have one negative culture down and we are hopeful that this 2nd one on Wednesday will prove that we are getting closer to being "official."

The Golden Arches

2012-03-09T00:02:00.002-05:00

Do you see those golden arches?!

"That's a M!" Madeline shouts while we driving on our way back from running errands

"That's a yell-OO M" she screams and points!

She waits for me to acknowledge that she has seen the golden arches.
"Yes, Madeline. That is McDonalds"

"McDon-nells chickn' nug-GETS!"

"Get McDon-nells chickn' nug-GETS! (The excitement is clear in her voice.)

There is so much enthusiasm for McDonalds chicken nuggets in our car that it is unbelievable.
Most mothers cringe at the thought of their child demanding McDonalds nuggets .....

every.single.day.

But, not this mom. I squeal in delight when she demands "chickn' nug-GETS."
I get excited hearing her voice change as she asks to get them. I almost can't get to the car fast enough (when we are at home) because I am beaming. I am just so happy that she is in love with a VERY high fat food.

Children with Cystic Fibrosis need the high fat, high sodium, and high calorie food that McDonald's chicken nuggets offer. In fact, CF patients often need 3 times the amount of calories that "normal" people eat to maintain a healthy weight and good lung function. Children, like Madeline sometimes have a hard time finding a THRILL with food because they are bribed, coerced, and sometimes forced to eat "just one more bite" of food at every meal. This can make food "unexciting" many times...

But, Madeline loves the thrill of going through the drive through and scoffing down all 4 nuggets before we take the 10 minute drive home. I can hear the "crunching" of the nuggets between her teeth at every bite and it seems like magic to my ears. I look into my rear view and see her squealing with delight as she is inhaling her nuggets. And the best part of driving home is when she asks...

"Another chickn' nug-GET?!" I turn around at the next light and say..."Say please....."

She "begs" me for the next nugget. I am delighted she is sooo happy eating these nuggets. I want to freeze this time for her because she seriously LOVES eating them.

And although I know that this is her new found favorite (high fat food )and times will change, I am hopeful that the cashier at the McDonald's drive thru doesn't think that I am seriously inhaling all of these nuggets every week!

Add caption

'Breathless Bride'

2012-02-27T22:53:00.001-05:00

"Breathless Bride: Dying to Live" will be aired on TLC on Wednesday, February 29th at 10pm. This story is about a 29 year oldCystic Fibrosis patient named Kristie, who is hoping to get a double lung transplant in time before her wedding. She fears that if she doesn't get the transplant soon enough, she won't live to get married to the love of her life....

Set your tivos....for this moving story about Cystic Fibrosis and effects of transplant.

Click here to preview the special-------->'Breathless Bride' Video - ABC News

What do you think? Can you?

2012-02-08T14:06:00.000-05:00

2012 has been a BIG year for the Cystic Fibrosis Community- especially with the FDA approval of a drug called, Kalydeco (a pill) used to treat the underlying cause of CF in certain patients who have a specific mutation. Unfortuneatly, this mutation is not Madeline's....and it only is found in 4% of the patients with CF. But, the great news is that there are drugs already being tried and tested in the drug pipeline to help CF patients like Madeline with one of the most common mutations, Delta 508. The Cystic Fibrosis Foundation gets money to find "cures" like Kalydeco from donations from YOU! Can you help us find a "cure" for CF for the majority of CF patients? Can you support us by donating to Madeline's cause? Can you help us fill our dream together? Our dream isn't that far away..BUT we need you to help us get there.

Please consider donating to our annual Great Strides Walk (CF's annual fundraiser) in May. "Madeline's Marchers" will walk to help raise money to find a cure. We also welcome more walkers to joing our team. You can sign up to walk or donate by clicking below

Click here to DONATE or WALK. Help support CF!

Final Culture Results....

2012-02-06T15:23:00.001-05:00

This afternoon we got the call that we have been thinking about since we first started this journey
over a year ago.

"Hi, It's the clinic....I am just calling to let you know that the results are......

negative. They came back normal."

The silence on the phone lasted forever until I had to pinch myself to say "That's GREAT!" I was fumbling for the right words because really it felt more like a dream that I wished for Madeline years ago when we started this battle. I had been those words my emotions nearly froze.....

and as soon as I hung up.....

Then, the tears started flowing. It's true that Madeline has been through a lot but, how nice it is to now know that these 2 weeks weren't in vain?! How nice is it to look over at Madeline after hanging up and feel so much relief for her, for us, and for all that our family has trudged through. It's amazing to look at her and think " YOU DID IT!" She beat this bug and I am soooo relieved.

And as the plan usually goes with patients that get one negative culture after many positive ones.....

We will return in a month to get one last culture results to be sure that Pseudo hasn't decided to grow back a little of what wasn't killed off by the IVs. But really that is the least of our worries because I truly believe Madeline has beat this bug off....

And I am sure that this isn't all of the battles that Madeline will face in her life with Cystic Fibrosis but, I know for sure that this is a battle WON for right now.

And I couldn't be ANY happier than that!

She is a painting SUPER STAR!

Glow

2012-02-05T15:03:00.002-05:00

It goes without saying that after admitting your 2 year old to the hospital for IV antibiotics and then bringing her home to more IV therapy....that some trust tends to slip away from the parent- child relationship that you have. Madeline is no exception to this rule. It's been a bit of a struggle these past few days(after getting the PICC out and ending IV therapy) to gain back a routine for all of us and try to ease the mind of our untrusting 2 year old. Madeline lately has been a little anxious about telling us to "close the door" to her room before bed repetitively for at least 10 times in a row though the door was shut minutes ago. She is telling us to "put the toys away" (Her language telling us to put away IV bulbs, syringes, etc) even though those haven't been out of her sight in over a week. She is has had difficulty falling asleep and cries because she is fearful that this "medical lull" is really just a matter of time before we all surround her bed with medicines, syringes, doctors with masks, and countless other medical things that she is now fearful of.

It's no doubt that she is trying to find a way to trust us all again. But between all these "unsteady" and emotional moments of feeling like she is so fearful..... the happy, and energetic Madeline rises to the occasion. We see her laughing, and running, and just enjoying life....and I begin to realize that this period is hard on all of our emotions. We are all having to pick up the pieces and get back to our "normal" life with little fears and more trust.....And this time proves to be more challenging on me when I see what those 2 weeks of fear dig into her spirit...

I look at her in her "happy and trustful moments" and I see the glow in her eyes and skin. She looks so amazingly healthy and it hard not to see how maybe all of this helped her grow a even chubbier and added a rosiness to her skin. She looked and acted healthy before but, I am amazed at her 2 lbs weight gain in 2 weeks....her body just seems rejuvenated. And I couldn't be more happier with where she is now....and how this may really have been all worth it in the end...(regardless of culture results). Because we all know that her trust is slowly coming back and her body is now stronger and healthier than ever.....

...and for all of these reasons I am so grateful for her, for everyone and their amazing support through all of this. We thank you all so much for helping us finally get here....to see that GLOW in her face and see
more and more positives effects of everything we all have endured....

So, thank YOU!

Clinic

2012-02-02T10:10:00.001-05:00

Relief is what we are all feeling...

The PICC line is gone. No more IVs!

We went in for a post follow up check up today at clinic. Madeline got some great one on one attention with one of the CF "Child Life" Specialist. She spent a long time with Madeline by playing with bubbles, decorating a fabric doll with markers(to look like Madeline) ,dressing her in a yellow gown, and pretending to play princess "dress up" with yellow hospital gown. Child life specialist are used to ease children's fear of procedures and doctors appt. Madeline really dreaded the yellow (isolation) hospital gown that the medical staff had to wear while she was inpatient. She was so fearful of anyone that would wear them- even her parents. The child life specialist stayed in the exam room for nearly 2 hours as Madeline was examined by her doctor and also helped distract her while the nurse was able to take out her PICC (iv line).

Making a face on her new doll at CF Clinic with one of the child life specialist

It was great to see Madeline so comfortable in a doctor's office. After being inpatient at the hospital, she had become so fearful of medical staff. It was a great comfort for all of us to see her happy during those 2 long hours.

Overall CF clinic went well and Madeline's lungs sounded clear. We were able to look at her last xray of her that was done in the hospital and discuss what the plan may be if this culture comes back "positive." Madeline had gained a good amount of weight since her hospital admission. She weighed in at a whopping 35.7 pounds and increased her BMI to 81%. This was great news! (Since she had lost weight in the hospital and gained that it back and more!) We are very happy with our little chubs!

We were also reminded today of how fortunate we are to have one of the leading CF clinic overseeing Madeline cf care. We are so grateful to have Madeline attend Hopkins...the whole CF team made this visit as smooth as possible for Madeline and ourselves. They go to great strides to make us all feel comfortable...and we understand how great that really is.

Leaving happy (with no PICC line) with her new doll...

As of now, we all feel relieved that we are free of staying up till 1am to administer 2 ivs during the night and enjoying the idea that life will return to what we remember as "good." Madeline has already realized that she is "free woman" and free of any lines restricting her from jumping on couches and playing rough. She is happy and it is an unbelievable feeling to see her so happy.....

Hoping for GOOD news on Monday.....

24 hours and counting...

2012-01-31T16:32:00.001-05:00

My life has been a countdown for the past few weeks. We have all been waiting and hoping for the day that we can finish battling this Pseudo ~~monster.~~ We have been dreaming about a day where we don't have to worry about putting endless drugs into our little girl to just "try" and kill if off....

Wednesday is our magic day. Wednesday is when the PICC line comes out!!!

Madeline has done over a years worth of inhaled antibiotics, a week admission to the hospital full of iv pricks, blood draws, checkups, and OR procedures (picc line and bronch). She has endured another full week of home IVs 4 times daily with nebulizer treatments, vomiting, diarrhea, and little sleep from all the worry about what may happen to her next.

The truth is that she has fought this pseudo beast in every possible way. She has tried every single medical treatment there is for this bacteria including 5-6 different inhaled/oral medications at home and two different IV drugs. She has endured so much to get rid of it....and I am so incredibly proud of how well our strong 3 year old has put up with this....

We will not know if Pseudo is still there until days after our Wednesday clinic. The IV is coming out because the iv antibiotics that she is on (to try and rid her of pseudo) can have irreversible damage to her kidneys, liver, and her her hearing if she is on it for too long of a time.

We will find out if the IVs were able to get rid of this nasty bug by next Monday. The clinic will call us with the news of whether the culture is positive or negative. I have come to the point where I can deal with whatever the results are. The fact is that Madeline has done everything humanly possibly (medically) to get rid of it....so if the IVs didn't work our only option will be to try and keep it "managed" at home.

This means doing inhaled medications every over month at home and going back into the hospital when the Pseudo becomes problematic at home (her breathing goes down, she gets sicks from colds etc and cannot recover, etc). It means that hospitalizations may be more frequent and we will have to monitor closely how the pseudo could be creating damage in her lungs. Its all a scary thought....to think that that this stuff may just still be inside her and continue to grow/cause problems down the road. But the reality is that I am okay with the fact that WE have done everything possible ...

We know that what ever the culture reads we have done what is best for Madeline. There will be no regrets that she did the IVs and it may not have worked.

But of course, we are so hopeful that our fight with Pseudo will be over very shortly and we can go back to our "normal" cf life that is managed at home for awhile....

Tomorrow, I will wake up happy, and relieved. My little girl will get her life back. She will be free from upset stomachs and endless IV therapy. She will be able to live "normally" and to get back to being her happy self again. She will be free of an IV!

I can hardly wait to have our lives back.....I can hardly wait to have my almost 3 year old enjoy life again the way most 3 year olds do. I can hardly wait for more smiles from her again.....

Updates tomorrow after CF Clinic!

BIG NEWS!

2012-01-31T14:18:00.000-05:00

Today marked a HUGE day for the cf community.

The drug called Kalydeco was approved by the FDA today. This is the first drug that aims to target the underlying cause of Cystic Fibrosis. Our community has been so excited about the news of this drug. It does only aim to treat the cause of CF in people with a specific cf mutation (not Madeline's). Even though this exact drug will not help Madeline, this is the beginning of finding even more drugs to treat her mutation.

Kalydeco is an oral pill that is given by mouth. It aims to treat only 4% of CF patients with a a specific mutation. There are already two drugs in the pipeline set to go to the FDA in a few years(we hope) to help treat the most common cf mutation(madeline's mutation) delta 508.

We have so much hope that more GOOD things will come within the CF community. My eyes are watering at how this news will surely impact so many CF people for years to come...especially as we see more drugs become approved.

Thank you to everyone who has given a dollar, a cent, or their time to Madeline's cause....Today, you can see how it has paid off.

To read more about this new drug development ....click here. Another article here.

In pictures....

2012-01-30T23:45:00.001-05:00

Clinic before admission

Waited 7 hours for our room and finally got termporary IV at 10pm
1st night admission

Lots of people to help distract...IPAD helped Madeline cope...

Bubbles with daddy

Head of bed (so much equipment for admission
Heart monitors, oxygen sox, IV pole and pumps, blood pressure cuff..)

Our small and cluttered room

Dollar store pendant I bought before admission to decorate walls...
It helped...the walls and rooms were SOOO drab. Not one picture on the walls)

Bathroom with shower (since we were in an isolation room)

discharge day with nurse, May

Discharge day with 3 of us

1st breakfast since being home

"Oopsie Daisies" gown made for chidren with PICC lines.
So much better than hospital gowns. Highly recommend to other CF mamas
with kids that come home for IVs. They have snaps up and down the sleeves
for easy access and are soft!!! They even come with capes to show your child they are
a SUPER hero! :) http://www.oopsiedaisies.com/hospital-gowns-for-kids/

Brave girl doing home IVs

We are nearly 1 day shy of getting rid of this PICC line....another post to come tomorrow about expectations at CF Clinic this Wednesday.....

Madeline's Strength

2012-01-28T17:42:00.001-05:00

What do you see in these eyes?

I see a little girl who is so very brave and strong. I see my little girl try to smile through all that she has been through these few weeks. I see a fighter in this disease against Cystic Fibrosis. I see my hero.....

It's true that the last week of being in the hospital has been really hard on her spirit. She is fearful and scared.
She continues to have IV antibiotics pumped through her veins 4 times a day at home leaving her with stomach aches, diarrhea, and a hoarse voice. She is taking more medicines now than I can count and being asked to eat 3 full high fat meals a day to try and gain back the weight she lost in the hospital. She is taking on 3-4 nebulizer treatments a day and using her vest after each treatment. She is expected to take a nap while worrying about what will be next in her unending schedule. She is the best example of what it means to be strong and to continue living and being as happy as you can ....She is doing her best ....

She wears the smiles despite how demanding life can be with this disease. She continues to do amazingly well for all that is being asked of her even though as her mom, I can tell that all these antibiotics, steroids, and treatments are so demanding on her 2 year old self....

She knows she is strong, she knows she will win, and she knows that so many love her.....
She knows that soon she will get a break in this.
And she (like all of us) knows that Pseudo won't win in this battle....not if she can help it.

Home on IVs

2012-01-26T10:32:00.000-05:00

Right before we were discharged from the hospital. Notice our smiles! That is Madeline's version of a smile. :)

Going home from Hopkins yesterday was so amazing. We all felt a huge sense of relief bringing Madeline back to the place that she feels the most comfortable. My parents were able to join us at home to help with extra tasks while we try to take care of Madeline's IV and medicines. It's great to have some extra hands to help us around the house. Unpacking and getting Madeline settled last night seemed like an overwhelming chore but we did it with our great help....and we are so thankful. Most of the ride home Madeline was in and out of sleep mumbling "Go do princess puzzle." She clearly had already decided what toy she wanted to play with once she walked into the door. It felt great to drive away from all we had been through yesterday. I just cannot explain the relief we all feel....As great as the nurses were(and that we were in one of the best hospitals in the country for CF care)....it eases all of our nerves to know that we have her home.

May, one of the sweet nurses that took care of Madeline on discharge day.

A few hours after arriving we met with a "home health care nurse". She came to the house and went over all of Madeline's IV medications, how to give them, and how to take care of Madeline's PICC line. This was the last meeting we will have with any home health nurses. So it was important we understood all the directions since we will be doing it on our own. We had a lot of training at the hospital for most of this so we felt fairly confident. Jack and I also did a few IV's medications on our own before we left with some of the nurses so we could get the hang of it before being home without the luxury of a medical team.

Instead of coming home with a full IV tower (tree) to hold the medication and IV pumps. We get to use these IV balls. The medicine is stored inside the bulb. Once it is hooked up to her line it infuses on its own. No timers, gauges, etc.

Madeline is getting IV's 3 times a day. She is getting Tobramycin (to kill Pseudo) and Ceftazdine as a back up antibiotic to protect against other bacteria that she may have encountered in the hospital or around. The bulbs take longer to infuse that the hospital IV pumps. She gets IVs every 8 hours. She get a IV at 6 am (takes 15 minutes), one at 2pm (15minutes), and then 2 at 10pm (takes over an hour for two medicines).

There is a clear process for administering the IVs with the PICC. We seem to feel pretty good about it. It goes like this for just one antibiotic IV infusion...

1. Wash hands, put on gloves
2., Wipe iv line cap (opening on her picc) with alcohol wipe (needs to stay sterile to prevent infection in her picc)
3. Hook up saline syringe, unclamp picc line
4. Push in 5cc of saline, clamp the line, remove syringe
3. Wipe iv line cap with alcohol wipe
4. Hook up antibiotic bulb (pic above), unclamp line, and let bulb deflate (medicine infuse for 15-45 minutes)
5.Clamp line, remove deflated bulb, wipe iv line cap with alcohol wipe
6.Hook up Heparin (keep line from clotting between infusions) syringe, unclamp line
7. Push in 2cc of Heparin, clamp line
8. Remove syringe

You can watch a demonstratinon that is similiar to our routine below. Although this video doesn't have all the steps done accurately, it gives you a sense of what we are doing. This child also has CF. (notice she does her vest while doing IVs. We are doing 4 neb/vest treatments a day in addition to IV therapy)

And that completes one IV therapy of medication to treat Pseudo. We have found the best way to do this is with two people handing one person supplies while the other is actually doing it. It also helps when Madeline is asleep since she is very fearful that the syringes are actually needles and still freaks when she sees us messing with her line.

The process isn't really quick and it is involved but we feel good about it. I would just about do anything at home for her medically rather than stay in the hospital. Our biggest fear is making sure the line doesn't fail. Otherwise, we will have to return to Hopkins and she will have to back to the OR to have another put in.
So we are trying to do our best to check the dressing, keep her from bumping it, and overall just doing our best to prevent any possible probems with it that we can. Of course, sometimes we cannot always control what the PICC does. I have my fingers crossed that this line will last well for the next week....

Supplies for IV meds (syringes to flush line and alcohol wipes)

Overall, Madeline is adjusting really well to being home. Thanks for all your care packages and toys. We have been able to give her some each day. She loves each and every one of them. It's so great to see her happy and see her acting more like herself at home.

breakfast

More updates as we get "good" at doing IV therapy at home!!! :) Thanks for all your comments and thoughts!

Day 7; Going Home

2012-01-25T00:43:00.001-05:00

It\'s official... We are going home on Wednesday from the hospital. I can\'t wait to break the news to Madeline before we leave. She has been asking to go since we checked in through crying and tears. I can\'t wait to get her back to the place she feels safe...with all her toys, animals, and her bed. I am also looking forward to sleeping in a bed again instead of a chair! We met with the discharge nurse today. We will meet with dr again tomorrow, have a dressing change, and get all of our Iv meds and additional medicine from the hospital pharmacy to take home with us. We were given some training on how to administer Madeline Iv antibiotic drugs that she will continue at home. The home health nurse will meet us at our house after discharge to go over more instructions on flushing the picc line, cleaning it, maintaining the dressing, bathing, and using the equipment and antibiotics to effectively treat Madeline at home for the next week. We are expecting a discharge around 3 pm after all instructions have been discussed and our paperwork has been signed off with the doctor and nurses. Then we will make the two hour drive back home with our little hero....celebrating her strength and our thankfulness that we are going home! More updates coming about our daily home Iv therapy and Madeline\'s adjustment to being home....

Day 6: Results

2012-01-23T23:47:00.002-05:00

We were anticipating the results of Madeline's bronch that was done last Thursday. We knew there wasn't alot of mucous in there but the doctor did have to suction out a section of mucous in the lower lobe of her lung. She mentioned that she didn't think it was pseudo in that lobe but reminded us that the results will tell all we needed to know.

The "final results" came in today. The results of Madeline's bronch read "negative". This means that the sampling they look out of Madeline's lungs and airways showed no pseudo growth or bacteria whatsoever. While we met with the doctor this morning, she reaffirmed that pseudo was in Madeline's throat area and not in her lungs. We are very thankful for this news since pseudo is a known bacteria to cause lung damage and it seems as though Madeline's lungs may have been untouched. We have even more hope that the two IV drugs she is getting infused into her 4 times a day will easily get rid of this bacteria in her throat area. The doctor mentioned that we have a lot better chance of getting rid of it there than we would if it was found in the lungs. I have my fingers crossed that after these 2 weeks of IV antibotics we could possibly be pseudo free! What a great feeling that would be....

As of now, Madeline is taking Prednisone (a steroid often used for asthma and cf patients) to treat inflammation in the lungs or airways. When Madeline's bronch was done the doctor found some inflammation so we will do a course of this drug along with her IVs, 4 nebulizer treatments a day, enzymes, vitamins, prilosec, zantac, and probiotics. Sometimes I wonder how her stomach can take all these drugs. She has her moments when she doesn't want to eat and you can surely tell that these high power antibiotics that are going through her IV lines are effecting her mood. But regardless, we are just thankful that we have a fighting chance at killing off this pseudo and it will be worth it in the end....(even as hard as it has been.)

We also got word today from Madeline's doctor that she will be able to finish her IV medications at home. We will be discharged from the hospital on Wednesday and sent home to meet a "home health nurse" who will train us on administering these drugs into her PICC line (iv line). It seems a little overwhelming but, I am hoping that I have good training before I leave the hospital. It's hard to believe that our family will meet once with the "home health nurse" and then be on our own for the next week at home to administer all Madeline IV antibiotics through her IV line. I am just thankful that we can be in the comfort of our home and, Madeline can feel more secure.

Once we finish our week of antibiotics at home, we will return to cf clinic for another culture to determine if the pseudo is indeed gone from Madeline's throat. And as hard as it will be to wait for those results, I know in my heart that we did whAT was best for HER regardless of those results. It will feel good to know that we did EVERYTHING possible to get rid of it....even if it doesn't work. I have high hopes....

And just like Madeline, another family is fighting the fight against this nasty beast Pseudo. The Topel Family has two cfers that recently cultured Pseudo and they are going through home inhaled antibiotics in the hopes of getting rid of it just as we had hopes for Madeline. Trinity and Cayden, two young cfers are doing their best to avoid what we are going through now. You can check out the Topel family's journey by clicking here. Tiffany, their mom, does an excellent job of explaining some of the treatment plans that most cfers who culture psuedo have to try at home first before resorting to IV antibotics to erradicate pseudo. (Just like we did....)

Let's hope that someday our cf children won't have to go through this to stay healthy. Some day there will be a "cure" for this disease. Please consider donating to the Cystic Fibrosis Foundation "Great Strides Walk" to help Madeline, Cayden, Trinity, and many others find a "cure".You can donate by clicking here. Thanks again for every ones thoughts and prayers. We have been moved by all the care and concern you have shown for Madeline. We thank you for being here for us when we need you the most.

More updates tomorrow as we prepare to go home with IV's!!!!!! :)

Day 5; No News

2012-01-23T01:26:00.001-05:00

Not much to report today. We have gotten into some sort of routine...if that is what you call being on hospital scheduling. We have been trying to get in 4 neb treatments a day. Usually we only do 2 a day at home but Madeline\'s doctor felt the extra nebs would help move the psuedo around more to help the Iv antibiotics have a better chance of eradicating this bacteria. And of course trying to fit in a nap, 3 meals, 5 Iv infusions, and countless checkups with the doctors, nurses, and respiratory techs makes for a very busy day. It would be an understatement to say that Madeline is tired...she is having a hard time relaxing since she knows usually a barricade of doctors storm in her room with needles, large masks, purple gloves, and a yellow gowns on to work on her. Usually once she falls asleep that nap helps bring back her spirit more and more each day. It was great to see her bounce back today after her nap. She has moments where she is just happy. That makes me happy seeing her being herself for those few moments.

Medically she is doing well. The ivs are going through her. She is eating and drinking fine. Her blood levels are good and she has no fevers from the bronch. She still has no signs of coughing or anything related to pseudo. The lung samplings results will be finalized from the bronch tomorrow (Monday). At that
point we will learn where the pseudo is hiding and what the plan forward will be as far as this hospitalization goes. We are extremely nervous about hearing the results and plan from the doctor. Hopefully we will find out when the doctor examines Madeline tomorrow morning. I will post more as we find out the results. Thanks for ALL your support. It\'s amazing to hear from so many people who are thinking of madeline and our family during this trying time. Your comments mean a lot to us.....

Day 5; No News

2012-01-23T01:25:00.003-05:00

Day 5; No News

2012-01-23T01:25:00.001-05:00

Day 4: Hope

2012-01-21T21:54:00.001-05:00

The morning started with Madeline becoming nauseated from all the IV antibiotics that are going into her system. It's really hard when she asks to "go potty" because she knows she needs to throw up. Sure enough after she got her breakfast out of her system her stomach seemed better. Throughout the rest of the day she seemed to bounce back from all the IV meds and her stomach is now fine again. I am thankful for keeping food down and getting those IV antibiotics in her system!

She also had one of her IV's pulled out this afternoon since she has a stable PICC line in her other arm and they now longer need the temporary IV that was placed the night she arrived. She did really well when the nurse had to take the dressing off and pull the IV out.

The doctors came by to talk about updates on her lung culture from the bronch that was done yesterday and to discuss other tests. She was tested for viral infections through a nose swab (not comfortable) and through her airways (during the bronch). Her doctors mentioned that those tests came back great- she has no viral infections in her airways or sinus passages. They seemed very positive about this fact since many cfers usually do have something viral going on in their airways/lungs. The doctors also mentioned that so far nothing has grown from the mucous sampling they pulled out of her lungs during the bronch. This means that so far no Pseudo is showing up from deep in her lungs. They noted that this was just "preliminary results" and the final results would be available on Monday. So, there could be some change in the sample but, we are hopeful that nothing grows. If pseudo does not show up from this sampling, the doctors will conclude that Pseudo is just hanging out in her sinuses and never was in her lungs. They continue to say that we have a better chance of getting rid of pseudo if we can determine it is just in her sinuses. We still are so hopeful.

Madeline is still struggling with being here. She is just so insanely scared of anyone who walks into the room. She has so many things done to her daily that it can be very overwhelming for even Jack and myself. We cannot blame her for being scared....especially since her 2 year old mind can not comprehend why she is even here in the first place. She asked tonight while crying "Go home?" while pleading with us to put her in the car. It's hard to listen to her asking to go potty just so she can avoid procedures and medical staff examining her. It's so hard to see the panic in her eyes and not be able to explain why we have to hold her down and make her go through this. I just keep hoping that as she gets older this may make more sense to her...

We continue to wish that Psuedo away....more updates in the coming days.
Thanks for all your thoughts.

Day 3 challenges

2012-01-21T00:11:00.003-05:00

Sometimes I worry about what our future will bring as it relates to Madeline\'s cf. Its times like these in the hospital that I really bank all my emotions on one thing..... a cure. It\'s no doubt that whenever your child is hospitalized its a wake up call. I think a lot about how grateful I am that Madeline doesn\'t have cancer or another disease that requires even more medical care. Life is so precious. Madeline is such a fighter and her feisty spirit here in the hospital reminds me that she will always be willing to fight this disease to live the best she can.

So many people in this world have to spend months after months with their ill children and from being here I see how much worse it could be for our family. This journey has been very challenging and as a mother my emotions have been tested. Those are the times that I feel like I cant take seeing Madeline throwing up, screaming, crying for them to go bye bye because she is so distressed from the hospital. I feel like ripping put her iv lines and carrying her out of here just because together we just can\'t take anymore of this disease or hospital. But after seeing and watching what is happening around us in my emotional states I realize that maybe I just need to be stronger and try harder. Just when I think I am pushing myself too much and I can\'t take it...I see others going through more than our family and I realize I have to find more strength. I have to keep pushing thru...because there are so many that deal with so much more....

Madeline continually pushes me to be stronger when I don\'t feel strong enough.

She pushes me to be better. I hope that doesn\'t change. I hope she alway pushes me to be better than I think I can be.

Day 3 challenges

2012-01-21T00:11:00.001-05:00

Day 3 challenges

2012-01-21T00:10:00.001-05:00

Day 3 challenges

2012-01-21T00:09:00.003-05:00

Day 3 challenges

2012-01-21T00:09:00.001-05:00

Day 2; Two Procedures

2012-01-19T21:17:00.001-05:00

Today was difficult for all of us. Madeline has been very scared of pulmonologists, nurses, anesthesiologists, respiratory techs....and you name it. The fact is that once you are inpatient there are medical professionals walking into your room continually poking, prodding, taking body temperature, blood pressure reading. These visits can happen almost every 4 hours. Today Madeline reached her breaking point when people dressed in masks, purple gloves, and yellow gowns swarmed her bedside. It was simply more than she could handle and frankly more than I could handle watching her freak out, propell her arms towards us, and break down crying or screaming. I don\\\'t blame her feeling scared or having these reactions but, it has been hard to hold our own. It is emotionally draining watching your child scream till she can\\\'t anyore after every person wants to examine her or stick her. The staff here has been great at working through these concerns but it does take a ton of patience from all involved....Madeline is still working to get there. She is starting to slowly trust and I am slowly starting regain my emotions again. Thank goodness that jack and I have had help working through Madeline\\\'s fears with my Parents. They have provided us with those needed "breather breaks" when jack and I feel like we just need to step away from her bedside. We are very grateful that they have been here to support Madeline thru it all too.

Through all the ups and downs today Madeline got her PICC line put in and had her bronchopsy. (mentioned these in my earlier post). Madeline wasn't able to eat from midnight last until 5 this evening due to these procedures. Both involved us taking Madeline down to the OR.She has to be put to sleep and we followed up with her 2hours late in the recovery room when we began coming out of anesthesia. There jack and I met with all the doctors and discussed her results while they removed her breathing tube and oxygen. It was hard to see her like this but, we were delighted it was over.

The picc line will serve as her Iv for 2 weeks to give her those needs Iv antibiotics to hopefully rid her of pseudo. we will have the results from the bronch on Monday but were able to speak with the doctor about what she saw during the bronch. There seemed to be very little mucus in her airways but some inflammation in her lungs. This seems to be fairly good news that her lunsg were clear looking but had some inflammation (which is common in many cfers). The doctor took a sampling of mucous from her lungs to send off for testing. We should find out on Monday if that sampling does have pseudo in it or not. If the testing comes back that the psuedo is not in the sample taken in her lungs we will most likely conclude that Psuedo is primarily just in her sinus and throat areas. (If it is in the sinuses we will have a higher chance of getting rid of it completely with ivs as the doctor mentioned.) It will be interesting to her the news on Monday.

As of tonight Madeline still has an Iv in her arm, a PICC (iv) in her other arm and sensors monitoring her vitals. Hopefully tomorrow we will get rid of some of these lines and she will be able to run around in her room. Her energy and spunk has started to come back to life again....and it is great to see her being happy.

It;s been a long few days but in the end we are hopeful that this will be worth it. Thanks again for keeping us in your thoughts.

(More pics on facebook....) And more updates as our stay continues....

T

Long day....

2012-01-19T01:11:00.001-05:00

We are all hanging in. It took us over 7 hours to get from admitting to an actual hospital room but we finally made it at 10pm. It has been a long day full of ups and down so this post is going to be short. Madeline got her temporary if tonight and will get her bronch and picc line tomorrow. I am hopeful that we will be able to get past the picc line and bronch as smoothly as possible. Hopefully things will stabilize tomorrow and we begin to get into a routine. Madeline's had a very long and hard day. Im going to try and get some sleep next to her. Thanks again for all your thoughts and notes. Jacks and I are trying to be so strong for Madeline. It helps so much to have others around you holding you up....I can't express that enough....More updates tomorrow....

What does this hospital stay involve?

2012-01-16T14:43:00.000-05:00

Here is a little about what our stay involves as it relates to Madeline's care and Cystic Fibrosis. Of course we won't know how this will all play out until we check in. This is what we know so far....

Madeline will be admitted to the hospital on Wednesday. She will first be given an IV until they can schedule her to get a PICC. We have been told that her PICC will be done on Thursday.She will be taken to the operating room to get a PICC (which is a long IV line) that is usually inserted by a specialized teams of surgeons. The PICC placement requires an anesthesiologist to administer sedation. The PICC runs from the insertion point at the skin to the arge vein that goes directly into the heart. PICCs often last longer than regular IVs especially if you need them for longer than a few days.

PICCs can create a lot of hassle too. Oftentimes they can get infected or get clots in there requiring them to be removed. Young children can often "accidently" knock them out by using up their energy (MADELINE!) Once they are removed the team has to start all over again. Our last stay when Madeline was 3 months was similiar to this PICC issue. She had to have her piccs redone since one of them got infected and started to clot.

She will be given two drugs through her PICC. They will need to monitor her levels of antibotics that is getting into her body since some of these drugs can cause permanent hearing damage (loss of hearing) and can damage the kidneys. The dosage of the medication has to be monitored so that it she isn't getting any damaging effect. They monitor her levels by continually doing blood draws daily. (not fun for a 2 year old!)

Her cf team is also considering doing a Bronchoscopy (Bronch). This procedure allows for doctors to examine her lung/mucus secretions. The mucus is often examined to find what bacteria is present in her lungs and how much of it is in there. This is also performed in an operating room and may help us see if Pseudo is growing directly in her lungs or to see if it may just be in her nasal passages/throat. If she has extra mucus (which oftentimes cfers have) they can suction some of it out to clear out her lungs.

Bronchoscopy

While she is the hopsital she will get 2 weeks of IV antibotics to try and get rid of the Pseudo. She will also be doing her usual (2 times a day) nebulizer treatments and VEST (physical therapy). In between all of this we will do our best to squeeze in meals, naps, and of course playtime.

Madeline will also be in "isolation" during her stay at the hospital. This means that she will not be allowed to leave her hospital room during the stay. Doctors, nurses, and any additional medical staff will be required to wear yellow gowns and gloves as soon as they enter the room. This is for Madeline's protection as well as other cfer who could get Pseudo from her. It also helps prevent Madeline from getting "bad germs" while she is in the hospital...especially ones that would complicate her lungs even more.

I will be staying with her in her room (as they allow one parent to sleep there). Jack will be going back and forth between his hotel room, the hospital, and work when days allow him too.

Thanks to everyone for your continued support. We cannot thank you enough for your calls, emails, and messages of thoughts. It means so much to us as we tackle Pseudo head out. More updates once we check in to the hospital on Wednesday.

Culture Results

2012-01-12T15:36:00.000-05:00

So apparently, Pseudo didn't get our memo. The memo that said "Stay away!"We all just wish that this stuff would just go away. But it seems apparent that doing a variety of inhaled antibiotics in different combinations is just not kicking Pseudo out of her body. Her culture again came back positive after 3 long months of non-stop inhaled antibiotics. Sigh....

There are no guarantees in this journey. CF is like that. There are no guarantees that doing 2 weeks of IV's in the hospital will even get rid of it. But for Madeline's health we have to at least try to see if it will work. Her lungs deserve that.

And as hard as this journey will be for the next two weeks, we know that it is really our best option right now.

It's hard to admit that you cannot do anything more for your child ...and maybe that is the worst part.

And as emotional as this is, we all know that Madeline is a fighter and together we will do the best we can to get rid of this beast. CF won't win this time if we can help it....

Upcoming Clinic

2012-01-03T22:51:00.000-05:00

We have officially ended our 3 months straight of inhaled antibiotics to treat Madeline's Pseudo and that means it is time to return to cf clinic. We head back on Friday, the 6th for a throat culture and check up.

It's been incredible not having to do ANY inhaled antibiotics after her usual nebulizers and vest the past few days. We finished up the inhaled Colistin on Monday that lasted through 3 straight months. The antibotic usually adds anywhere from 15-20 minutes onto a normal treatment time. Just having to do 2 nebulizers feels like such a HUGE break instead of the 3 that we have been doing non stop.

I still remain clueless as to how Pseudo could have found it's way into her lungs at made its home there. She continues to be non-symptomatic (no cough) and full of energy. So many children who culture Pseudo become symptomatic within 6 months of culturing it. Fevers, coughing, and sometimes lack of energy are key signs that the Pseudo is taking over their bodies. We are extremely thankful that Madeline is the exception to this rule as it relates to Pseudo....

But one thing continues to haunt us....If she isn't symptomatic certainly shouldn't she easily be able to get rid of it through a year of various inhaled antibiotics? If the culture is showing only moderate to slight Pseudo shouldn't her body react to these endless hours of drugs?

These are the questions that continue to have no answers. We may never know why. But we will continue to hope for a clear culture and a good check up on Friday. I have begun to understand the meaning of the word hope....

And hopefully, by next week we will have a plan as to where we go from here. We again thank all our family and friends for their unending support....

Updates on Friday after clinic...

Can you help us?

2012-01-02T19:55:00.002-05:00

The Virginia Chapter of the CFF (Cystic Fibrosis Foundation) is in a charity tree contest. We need YOUR vote to help win $1000.00. Voting ends at midnight tonight and the CFF is in 2nd place.

This is ALL you have to do to cast your vote:

Cick here to go to the website. Then, click on Trees, click on the picture of the Cystic Fibrosis Foundation's tree, and click on Vote. Then, select the Cystic Fibrosis Foundation and click on Submit.

It takes less than a minute. We appreciate your time. Thanks for voting!!! (Madeline appreciates it!!!)

Another CF Mama...

2011-12-28T18:19:00.000-05:00

Another CF mom, who I consider a great friend, shares a blog often about her son's CF journey too. She is a great writer and shares her experiences being a cf mom to her 2 year old son named Bennett. And although each CF child has their own story with this disease, it seems that we all share a lot in common.

I urge you to check out her blog post today. She portrays the feelings that many cf moms can relate to and of course her own struggles as it relates to her son, Bennett having Cystic Fibrosis. I nearly broke into tears at the end of her post today- because I too, can relate to many of her feelings.

Well said, Breck! Thanks for sharing your honest feelings with all of us....

You can check out her post and blog here.

Our Challenge...

2011-12-23T14:40:00.000-05:00

Usually, Jack and I are constantly discussing Madeline's weight and trying to find ways to add more calories due to the need for extra calories as it relates to Cystic Fibrosis.

About a month ago, Jack and I decided it was time we take a look at ourselves and start the
24 Day Challenge by Advocare in a effort to eat better and also loose some extra weight we gained. The truth is that Cystic Fibrosis is a stressful disease and oftentimes, Jack and I use midnight nachos or an added snack/alcoholic drink to help sooth that stress. Indulgence is never a bad thing but it just felt like those indulgences had taken over our waist lines. Not to mention that having a child with CF means you have to KEEP and SERVE high calorie/fat meals and snacks. It's not always easy serving cookies, bacon, and greasy foods. This was the right time to work together on a goal. A goal to lose some of the weight and stress....

Christmas eve marked the 24th day of our 24 Day Challenge. Together we lost over 20 pounds! Jack lost 13 pounds and I lost 10! (and I dropped a size in pants!) We had an incredible time taking on this challenge together and learned so many ways to make healthier meals that taste good. The challenge also brought us closer together in ways I never thought it would. Laughing about the awful fiber drinks, comparing who lost more weight for the week, and confessing how we both cheated from the diet. It was hard work but so worth while. We didn't manage to fit in exercising as a part of the challenge but if we had, I can only imagine how much MORE weight we would have lost.

The best part about Advocare is that you are encouraged to eat every few hours. It is simply NOT a starvation diet. We also used quite a bit of recipes compiled from sources online. The hardest part was omitted ALL alcoholic drinks and soda. Once we got into a rhythm, we thought very little about either. I haven't had a Coke Zero in over 24 days and I cannot say that I even want one today. (Did I mention that we usually have 3 cases of Coke Zero in our garage. It is surely was an addiction for Jack and I.)

Hopefully we didn't gain too much over the holiday...my waistline is somehow feeling those added cookies that we ate. It's time to jump back to Advocare. If you are looking for a jump start to your weight loss...I totally recommend! These are the best photos I can show to display the change....

BEFORE

This was taken this summer....(I may have lost some from then....but you can see my face showing more weight)

AFTER

Advocare really help you take off the "belly fat" unfortuneatly, I lost some in my chest too.
Boo! ;)

Keeping the Star...

2011-12-12T16:33:00.000-05:00

Just a few pictures to capture a funny toddler moment....
(picture quality isn't the best though but you get the point!)

Madeline really loved the star topper for ourChristmas tree. She loved holding it.

She loved holding it sooo much that when Daddy went to lift her to place it on the top of the tree....
she didn't want to let go....

Meanwhile we are explaining to her that the star NEEDED to go on the top of the tree.
Daddy even showed her how to do it by demonstrating it once.....

But still.....

She decides to look down at her feet and around. Can you see Daddy grimacing?!
Daddy is starting to say..."Man she is heavy."

(Suspending a 33 pounder in the air for long periods....must be tiring!)

And still I am taking pictures....and we are all starting to laugh....because Madeline won't put the star on the tree.

Can you see Jack smirking? Now, Madeline is laughing....
She found a new funny game by keeping the star herself.

And guess who STILL has the star! She is so proud of herself and we were laughing.
Can you say cheesy smile?!

Who would have thought that a 2 year old could make adding a star so funny....
It will be a good story to tell when she is older.....

"The Christmas she didn't want to put the star on the tree... and wear out Daddy's arms...."

Tree Shopping

2011-12-03T23:28:00.001-05:00

We decided to drive out to a christmas tree farm and cut a tree ourselves this weekend. We knew Madeline would enjoy being outside and thought she would love running through a field of trees(being the nature girl she is). She repeateatly asks anytime we get into the car.....

She first says, "Go to the Zoooo?!" (She loves the animals at the national zoo.)

Then she says, " So see YaYa Poppi....or Grandpa and Grandma?" (Her grandparents)

And usually if those don't work she asks, "Go to the Parrrrk?"

If any of the 3 places aren't on our destination she gets a little bummed out....

So over the weekend I asked her, before she could ask me:

"Do you want to go to the park and get a Christmas tree?"

She squealed in delight and her face lit up with a smile. I hit the nail on the head. Two words....

"PARK" and "CHRISTMAS TREE"

She is VERY fond of those things!

So even though it wasn't a "park" she didn't know the difference because they had sticks.....another favorite thing!

Those sticks are SUCH a favorite thing that she ignored the trees and ran through mud puddles marveling in
all the sticks she could pick up.

And excited more and more about pieces of sticks....and GRASS....

                          She was not enthused with the tree we were about to cut down or posing with me
                        for a picture.....such a nature girl..

                       Just wanted to continue her search for more STICKS....

Jack hauled the "perfect tree" back to the car for us....

(Still hauling it away through the field of trees.....)

We came home to hang lights on the tree. Madeline LOVED the lighted tree....

Hopefully this weekend we will finish decorating it....with her help. ;)

"Bah Hum Bug" to you Pseudo!

2011-11-30T15:35:00.001-05:00

Here we go....Here we go....

Again. Again. Again.

Go away.....Pseudo....

We are now finishing up the 2nd inhaled antibiotic, TOBI to combat TOBI out of our 3 month round of antibiotics. As most of you know, Madeline has been battling Pseudo for almost a year and have tried almost every combination of inhaled drugs that are imaginable .....

The doctors suggested that we try 3 months straight of inhaled medications instead of taking a month off in between medications (as cfers usually do so that their bodies do not build up a resistance) to kill off Pseudo this way. We have been doing just that and through it all Madeline has been an awesome game player, star trooper, and a strong fighter against this bug. She has sat through over 3 hours of inhaled medications per day in the last 11 months and frankly it is getting quite OLD.....

I am as tired writing about Pseudo as I am calling familiar people now at CF Services Pharmacy to refill yet another prescription that costs the insurance $5,000 per month. These inhaled drugs are costly and the insurance is beyond tired of "approving" them for Madeline's care after 11 months. The insurance company has decided that they want to continually deny Colistin now after written attempts made my Madeline's doctors and the CF Clinic to prove that they drug is necessary to Madeline's health. So, it is obvious that the insurance, Madeline, and our family is so over Pseudo. You would think this beast would get the message?! But....I am not done fighting Pseudo....Not yet.....

Hopefully the combination of Colistin in October, TOBI (which we are finishing in the next few days), and Colistin again in December will give Pseudo a run for its money. And if it doesn't I guess I will have to wish again for Pseudo to take havoc somewhere else in 2012....

Because as sad as I am that we have spent time, money, and emotions fighting this beast.....I am very grateful for her maintained health. She has an amazing spirit and her energy is unstoppable. She is a true fighter and we are grateful that she has been able to gain weight ~~extremely~~ well. Somehow that Pseudo is being managed inside her (because she isn't getting worse! ).
I couldn't be happier about that but if ONLY it would ......

just. go. completely. away.....

Until January (when we go back to clinic for a new culture to see if it still there) Madeline gets to to take all of the Christmas joys this year. She has already found a liking to dancing around Christmas trees for minutes on end, singing "Jingle Baalls", and excitedly running back and forth across rooms with her Santa hat on.

The truth is that Psuedo or no Psuedo- Madeline is happy!
(It's hard not to be happy about that!)

Fears

2011-11-15T17:44:00.001-05:00

I think it would be fair to say that right now our house is surrounded in a construction zone. Living in a brand new development brings every loud noise you can imagine. We have houses being built on all sides of us and from dawn to dusk there is jackhammering, bulldozing, hammering, etc. The noises are loud. They are sometimes unsettling to a toddler.It may just be hard to tell when the noises will stop and where those noises are coming from.

In the world of a almost 3 year old - noises like these are frightening and it has taken me some time to realize why they may be. This is what I found: As adults we live in the world that we have already grown to understand. We already where noises come from and that we are safe from them. Adults have the knowledge of what that sound "could be" but for toddlers it can be the fear of the unknown....

And it would be fair to say that many toddlers have fears, especially as they begin to explore the world. They become smarter and learn that they are not always "safe". They learn the world is full of things that are sometimes unpredictable. Many toddlers( like Madeline) are smart enough to know that the world is much bigger now. Madeline is smart beyond her years....she has learned to fear a little more and I blame some of this on Cystic Fibrosis.

After countless doctors appointments due to cystic fibrosis, Madeline has learned to fear that hospital/doctors offices are the MOST unpredictable places to walk into. She has learned that stickers and mommy hugs will not take away what those places hold. She has begun to think that most buildings that have a waiting room and are followed by small rooms are indeed doctors offices or hospital settings. She has learned to not trust me when I tell her "It's not a doctor's office." She has learned that sometimes your mommy brings you to these places often(cf clinic) where they stick you over and over, shove swabs down your throat, take countless x-rays, and do countless other painful or painless tasks.

She has been doing this routine for almost 3 years now and she is aware.She knows that each visit is unknown and that clinic brings uncertainty. She sits for 3 plus hours every day at home (with little fight )doing her nebulizers. She puts up with a lot. Most cfer's will tell you "it's not always easy- but it is MY life." She rolls so well with the punches....so sometimes it's the other parts of life that can become hassles for her since she is practically perfect for the "cf life".

But unfortunately, having such a fear...can make you more cautious about other fears you should look out for (sometimes irrational). She fears the construction equipment, she fears unknown noises in stores, she fears not knowing when the noise might come or how long it will stay. She holds her hands over her ears and says "all done". Madeline really wants these fears to go away but she feels them. She is immune to loud noises (blasting TV, noisy compressor) but only when those noises are not known....much like the doctor...much like what Cystic Fibrosis brings.

It's been hard pulling her out of her "fears" in the past few months. She seems to be getting better at home by naming what each noise is as she learns to say..."That is the microwave" as it begins to cook food or she points and says "ice maker!"

And initially, I was sad for her because she had all these fears. I began to worry that first Cystic Fibrosis was making her fears that much worse. And then I realized....

Yes, she is afraid of things but, really she just wans to learn more about what is making the noise. Once she can identify the noise, she is perfectly okay. In fact, she is MORE than okay. I have learned that my child wants to feel safe in a world where she is asked to do so much and take so much (treatments, medications) while learning more and more.

Oftentimes the screams and the "ear covering moments" are eased with simply her favorite pass time- singing and dancing...
Here is a perfect example:

We went outside today. A bulldozer whizzes by. She screams and covers her ears. She is clearly showing fear and is irrational. Nothing will work ....

Through many failed attempts as her mother, I have learned that often the one thing that may work is singing.
She LOVES singing.

I start singing and doing a finger play. "If you are happy and you know it....

If you happy and you know it shout "HOO-RAY" (wish added hand gestures over head for hooray!")

and another.....

And below....(singing her heart out)....while doing more gestures

Although this method doesn't always work, I am getting better at finding way to distract her and she is learning to deal better. I am learning with her and we both will continue to try to make sure that Cystic Fibrosis doesn't controll all our fears ...(at least not ALL the time!)

The Antibiotic Fog

2011-11-10T10:57:00.001-05:00

We have begun to fall into a "Colistin, TOBI fog"....suddenly our life with all these inhaled antibiotics have become ~~"regular"~~ life for us lately. I think Madeline has even "adapted" extremely well to the ~~LONG~~
treatments that follow all the other nebulizers. After sitting through 2 nebulizers (25 minutes) plus the VEST (another 20 minutes) she rarely tries to get up to "run away". She just seems to know that the last nebulizer is a part of her life now and has been for the 10 months really. I am incredibly grateful that she usually doesn't fight us too much on these added antibiotics but, a part of me is so sad that she has come to accept sitting for an additional 20 minutes as "normal" ....

This round has been different for us though. We not taken our usually "break" between antibiotics. We started Colistin and completed the month. Then, immediately began the TOBI. She has had no break in between antibiotics. Usually cfer's take a month off in between monthly rounds of antibiotics so that their body does not build up a resistance to them, but Madeline's doctors are hoping that by alternating medications with constant treatments it may just work killing of the Pseudo.

We are about halfway through this 3 month course. We finished Colistin and are a few weeks into Tobi. We will go back to Colistin in December to finish off the 3rd month straight of inhaled antibiotics. Then, after Christmas we will check back with the clinic to get a throat culture. That culture will determine whether it is time to admit Madeline to the hospital for IV antibiotics or not. This is the last push to beat down that beast that is brewing inside her and although I have a ton of hope, I also have some doubt..at least with TOBI....

The Colistin seemed to make her cough (productively) but not with the TOBI. I have my HUGE doubts about TOBI. I know TOBI is considered (in most cases) the best antibiotic for the treatment of Pseudo and it used as the #1 option for it. But I keep wondering.....what if Madeline's body doesn't think it is the best antibiotic for her body. What if TOBI just isn't right for her.....

And after doing a LOT of TOBI these 10 months to try and get rid of Pseudo....I have little faith in this drug.
It hasn't worked. And I am just hopeful that Colistin will finish off what TOBI couldn't help for the last month... That maybe Colistin IS her miracle drug...

As the holidays approach I feel like I have HOPE written all over me. I am throwing everything I can into the idea that these constant 3 months of alternating drugs will be the magic for Madeline's lungs. I am focused on how exciting this would be if these drugs actually worked and less about what could happen if they don't. And I've given myself permission to enjoy the holidays and worry about the culture results afterwards....

....because CF may be in our lives but it will never totally control our lives.

National Zoo- In pictures..

2011-11-10T10:26:00.001-05:00

Last weekend we took a trip out to the National Zoo in DC. We live really close to the city and since Madeline is really into barn animals and wild animals right now we thought this would be a perfect outing for her. She constantly names all her animal figurines and says each sound that the animal makes. She is was so intrigued by all the animals at the zoo and wanted to point and name each. Now every day she asks me....."Go a zoo?"

Her favorite- "look- coooooows!"

She really enjoyed the farm animals the best...

Daddy and Madeline...

Tiger began to roar while looking at the crowd...

Getting tired from all the walking....

Running around at the zoo....and LOVING it.

So happy...

Heading home...so tired..

Life in Pictures: Madeline @ 32 months...

2011-11-01T14:57:00.000-04:00

We call this the "pajama bag lady look " for a princess
All created by M herself....

....because EVERY princess needs a horse (even if it is daddy!)

Pediasure (in a cup) and a chocolate chip cookie for breakast?! I think so.
My little girl LOVES cookies and I LOVE that they provide lots of FAT for her body!

Love my cookies....a true cookie monster!

Running for a Cure....

2011-10-27T14:05:00.001-04:00

We have always been extremely grateful for family and friends that give yearly to the CF Foundation in hopes of finding a cure for Cystic Fibrosis to help Madeline and others life a full life. When Madeline was diagnosed with CF around 2 months we knew we would need people around us to help us through this journey. Never though had we imagined then what others would do to help support Madeline's disease in the ways they have in the past few years.....

Shortly after moving to our new house in February of this year, we one of our new neighbors. Just a few months later those same neighbors had already signed up to walk the local CF Great Strides Event in support of Madeline. We were amazed at how our new friends has dedicated their Saturday to walk for Madeline's cause even though they had recently met us and learned about Madeline's CF. This is when we came to really know the Morrison Family...

Phil with his family. (The Morrison Family)

And since the CF walk in May of this year, we have come to know them not only as our neighbors but also as our good friends....

In September, our family got a call from Phil saying that he wanted to run the Marine Corp. Marathon in support of the Cystic Fibrosis Foundation and Madeline's cause. It meant to much to us that the Morrison Family chose to support the CFF while Phil runs the marathon.

This Sunday, Phil will run the marathon around and through DC supporting those with Cystic Fibrosis.
We couldn't be more grateful for all his thoughtfulness and hard work to help those with CF just like Madeline. There are only a few more days left to donate. Please help us and help Phil meet his goal as he runs to support an AMAZING cause.

Click here to donate!

GO PHIL!!!!!!!
(A big thanks to everyone who has already supported Phil and the CFF by donating! )

Sunday at Burke Lake

2011-10-24T17:13:00.000-04:00

Madeline thoroughly enjoys nature. We decided to check out a local park in our area that is situated around a lake. She loves to take it all in....

Checking out her surrondings...

Fishing pier

Leaving....Daddy & Madeline

Smartypants at 2.5 years old

2011-10-19T21:30:00.000-04:00

Madeline's math skills....

Identifying letters in her name...

This and That

2011-10-18T15:24:00.003-04:00

Mommy and Madeline are feeling "all better." It's been a crazy few weeks and we weren't sure if Madeline's cough would clear. But, now we can say that she is back to her normal happy-go-lucky self and it makes me so happy to see her feeling better. It was nice to dodge the hospital this time....and we truly appreciate everyone's emails, thoughts, and comments. It means a lot that so many people were thinking of us. So, thank you friends!

Through Madeline's bout of not feeling so hot a few of her fears became exaggerated . Unfortuneatly, those fears include the vaccum, construction equipment, lawn mowers, blow dryers, hand mixers, blenders.....

Well, you get the point! Many household items that are very LOUD! At the sight on these items Madeline screams continously and begins to panic. She cries and basically hyperventilates (and sometimes gags which resulting in throwing up...) Nothing really can calm her until the item is just. plain. out. of. sight. (...and even then it takes TV to make her forget what she just saw/heard). We have had our encounters with some items as grocery stores, while walking outside, or simply playing on her swingset. It's been a little difficult to clean (vacuum), go outside (surrounded by construction equipment), get ready (blow dryer), or even bake (mixers, blenders)!

So lately Jack and I have found some creative ways to make these things happen without having a hyperventilating toddler. Have you ever blended something in your bedroom? I am hopeful it is phase that will slowly change. But as of now, she is keeping us on our toes!

Updates on her inhaled antibotic coming soon! (we are half way through it!)...

26 minutes...

2011-10-06T16:09:00.002-04:00

26 minutes...

That is exactly how much time I put Madeline's nebulizers into the microwave for....
And I know a lot of your are wondering ....."How is that possible?"

Usually we wash the nebs with soapy water, rinse them off under the faucet, and place them into the
(baby bottle) sterilizer for exactly.......

6 MINUTES....not 26 MINUTES?!

It wasn't until I smelled something burning that I realized that it may have been this.....

The sterilizer looked fine when I pulled it out of the microwave...but the tough part was actually
pulling it out of the microwave....

When I did manage to get it out...it left a string of melted plastic inside the microwave and a BIG hole
in our sterilizer....

And I cringed as I opened it. I was sure all of Madeline's nebulizers were melted. All of them at $18.00 a piece.....

...and those nebulizers were untouched. It seems as though every CF mom has melted nebs in there lifetime. It is what we do all day....sterilize nebs 2 -3 times daily. But never have I melted the sterilizer.....

I am not exactly sure how I did this. But I can only figure that I was racing around to get things done and my fingers must have hit too many buttons on that mircowave to get to 26 minutes!

I am pretty sure the timing was right though because my mom walked in the door to watch Madeline just as it was happening. And I think this was a good sign that I needed a small break from mommyhood for a bit.

I am not entirely surprised by my mishap with the sterilizer. It's been a crazy week. Madeline got an ear infection over the weekend, followed by a cough. So, I have been spending a lot of time tending to her and hoping that these antibiotics do some magic. We also started inhaled Colistin at home to help treat her Pseudo and have worked in an added treatment in hopes that it helps her cough subside. We are vigilant but still hopeful that the cough is a result of her ear infection and it will clear. In the meantime we understand that if it doesn't go away or she worsens (after the antibiotics).... the hospital may be our best option.

More updates soon.....

Intense Colistin....

2011-09-27T19:27:00.000-04:00

Yes, that is the name of Madeline's new inhaled drug- Inhaled Colistin. It sounds rather simple. After greeting the UPS guy at my door today, I forced myself to break a smile to say "thanks." At least there is another drug out there that may help Madeline beat this Pseudo. I am hopeful for Colistin but, it doesn't take the sting away that this fight is just beginning. We have done (inhaled) TOBI and Cayston....Colistin is only inhaled drug we haven't tried and learned....

And when I say "learned"...I mean it. Each of these inhaled drugs come with a list of directions. Some are administered cold, some are given twice or even three times a day, some may have a specific nebulizer to use, and then there is one that has to be mixed with a syringe.....

This is when I started to think that Colistin is intense..... (maybe a little overwhelming is the way to put it)

To mix your daily dose of colistin:

1. Remove the lid from the colistin vial.

2. Remove the lids from the sterile water and saline vials.

3. Swab the rubber top of all vials with an alcohol swab before inserting the syringe.

4. Draw up 2mL of sterile water for injection into a syringe (always use a new syringe with each treatment preparation).

5. Inject 2mL of sterile water into the colistin vial, while gently rotating and swirling the bottle (to prevent foaming) until all the white powder has dissolved. DO NOT shake vigorously.

6. Withdraw 1mL (75mg) of the colistin and place it into the nebulizer.

7. Draw up 2mL of normal saline and add into the nebulizer.

8. Place the remaining mixed colistin (1mL) into the refrigerator for future use.

9. Discard unused portion after 24 hrs.

Then, Madeline will take it by nebulizer for 20 plus minutes (added to her already existing 40 minutes of VEST physical therapy and other nebs.) Maybe this is the miracle drug for her....

For one thing I will be learning a lot.....

And we will be getting another vial of Coliston for the Cystic Fibrosis Services pharmacy after seeing

this...

One glass vial of Colistin broke on the UPS truck.

Day 1 of Colistin is coming. I will learn as many inhaled medications as I can and go through intense Colistin just to help my little girl get better....

....please be Madeline's miracle drug.

We have hope. Lots of hope.

Clinic and Culture Results

2011-09-20T09:31:00.002-04:00

All three of us enjoyed our overnight in Baltimore, Md over the weekend. The city helped wash away a lot of our worry and drained the roller coaster of emotions we had after Madeline's clinic visit. I am always thankful for ordinary distractions to take the obvious away from us for a few minutes- the inner harbor and city of Baltimore helped do just that. It allowed me to forget about Cystic Fibrosis for a little while....

We immersed ourselves in waterfront dining, drinks at the hotel bar, and a Laurie Berkner concert. We shared a king size bed all snuggled together. We watched Madeline squeal in delight as she danced and ran around to the street steel band concert. It seemed like the little things this weekend were a big deal.....

And that may be due to the fact that the Pseudo doesn't seem to be leaving Madeline's lungs. In fact, we learned that it may be extremely hard to eradicate Pseudo at home. We went over our "options" with the Madeline's doctor (s) at the clinic. They recommended admitting her to the hospital now for IV antibiotics for 14 days or trying one last (different) inhaled drug that we have not tried called Colistin. It's been said that 80% of cf (children) patients can eradicate Pseudo through the use of inhaled antibiotics (such as TOBI Cayston, and/or Cipro) after a few rounds. Since Madeline has been battling Pseudo for over 9 months and we have tried all these drugs with different combinations it appears that Madeline falls into the 20%. She represents the 20% of cfers that cannot get rid of this bug with at home antibiotics. There could be many reasons for this- all of which we are not exactly sure. The most common possibility would be that the Pseudo could be down in her airways further making it hard for inhaled antibiotics to reach.

In the waiting room before clinic

Because she continues to be non-symptomatic and is gaining weight every visit, the doctors are continuing to give us options. Once this round of at home antibiotics are finished we will have run out of options. Then, the only option will be for her to be admitted to the hospital for IV's for 14 days. This. Is. Exactly, What. We. Have. Been. Trying. To. Avoid.

So if Madeline was admitted she would require a PICC line. This is a thin catheter that is inserted into her vein (usually in her arm) and threaded up near her heart. This procedure would require madeline to be under anesthesia and is preformed in the operating room. Picc lines are used because IV's often fail after a few days of constant use. She would receive 2-3 drugs intravenously for 2weeks. It was also recommended that Madeline would have a bronoscopy while under the anesthesia for the PICC. (click here for info about a bronscopy). This procedure would give us an idea of what kind of bugs are in her lungs and tell us where the pseudo is.

There was some great news at clinic too. We learned that Madeline gained another 1.5 pounds in 6 weeks and now weighs 32.5 pounds! She continues to remain at the 80th percentile. Her doctors are very pleased with her consistent nutritional status.

The culture results came in yesterday and of course our enemy was present- pseudo. It's hard not to be able to "fix" you child in circumstances like this. We will continue with our at home antibiotics for 3 months until Madeline begins to become symptomatic or we decide that we need to admit her because it is just "that" time. The doctors continue to support our decision either way and tell us that there is no "right answer." As a mom I felt the ground move from under me when the doctor mentioned at clinic this: "I cannot guarantee after she is admitted to the hospital fo 2 weeks with IV's that Pseudo will go away. I just cannot tell you that." And this fact may be the hardest part. There is no "fix" that is 100% guarenteed.

As hard as this is, we are hopeful and we will continue to fight this fight.
Madeline is a fighter and so are we....

Clinic Friday

2011-09-14T23:06:00.002-04:00

We will make the trek again to Baltimore for Madeline's CF appointment on Friday. We have been going more frequently the past 9 months because her cultures continue to come back positive for Pseudo. It seems like we are averaging every 6 weeks for appointments- which is more appointments than I would like for Cystic Fibrosis. Typically Cf patients are seen every 3 months( or 4 times per year). I am hopeful that sometime soon we may be granted a reprieve from our nasty enemy- Pseudo.

To take the edge off of a typical clinic visit, we decided to make this an overnight trip. We will be staying in a hotel for Friday evening on the harbor in Baltimore. On Saturday we will take Madeline to see The Laurie Berkner Band Live on pier 6. (If you haven't checked them out- click here! I am such a fan!) We have all 3 Laurie DVD's and itunes songs. Madeline is currently obsessed with watching Laurie's music videos for every. single. treatment. So, I am more than excited to see Madeline's reaction as she realizes Laurie is right in front of her.

The Laurie Berkner Band

Last trip we visited the national aquarium after Madeline's cf clinic. Jack and I have found that having something to look "forward to"afterwards makes the clinic visits a little easier. Even though Madeline may be too young to understand what "fun" things are coming, it seems that she too is able to relax a little if she has a distraction right after "the ins and outs" of clinic.

It is no joke that cf clinic appointments are mentally and physically exhausting It is quite a process
speaking to nutritionists, nurses, pharmacists, and then her doctor. It reminds us that Cystic Fibrosis is a HUGE part of our daughter's life. This appointment isn't too different. It will involve getting annual blood work done or possible x-rays. Every September I hold my child down while someone tries to find a tiny vein to poke for 4 viles of blood in order to test her vitamin levels. The x-rays can be even more draining. Someone straps your child to a board with velro straps while xrays are taken. It's hard watching your child scream in fear and you can do little to "save them." This is the appointment that I feel as though my child looses trust in me for just those few minutes. And then suddenly we walk out of there....

...and life resumes as normal. I am thankful that life has been bouncing back lately and, we haven't had any HUGE cf hurdles yet (knock on wood!) There is always something to celebrate the day after clinic- whether it be big or small. We continue to be thankful that Madeline remains "non symptomatic" even though her cultures continue to come back positive for Pseudo.

Again we appreciate all the inquiries and comments about Madeline's health. We couldn't do all of this without our family and friends... Updates later this weekend!

My little "porker" (love ALL the chub!)

Last few moments of summer..

2011-08-29T21:55:00.001-04:00

It seems as though the summer has flown by and I have been horrible at updating the blog lately. We have been busy with hurricane warnings...

We faired well through Hurricane Irene and we are very thankful for that. Just days before she arrived we rushed out to try and buy a generator in the area. We actually had to put a deposit on a generator over the phone before it arrived in the store- that is just how SOLD out they were. The store promised a shipment the next day...and sure enough we got a call that our 5500 watt generator that arrived! Lucky for us, we didn't have to use it! Our power stayed on! We had a lot of rain and 50 mph winds but overall no damage. We were very thankful that we live in a new neighborhood with virtually NO trees. After feeling our first earthquake last week and hurricane this week....we have had enough excitement from nature for awhile!

Lot behind our house during the beginning of the storm...

We are getting VERY close to finishing up the TOBI treatments. In two days, we will officially be done with her inhaled TOBI for this cycle. She has done amazingly well with this round and has decided to hold her own nebulizer from time to time. Madeline sounds very hoarse from this round of TOBI and it seems like her throat might be a bit sore. We have seen these side effects before from TOBI but not as severe. We are very hopeful that this might mean TOBI is working hard at killing off this Pseudo. We return to CF clinic in a few weeks for a new culture and discuss what is "in the plans" for Madeline if she continues to culture this bug. She still looks healthy, displays NO cough, and has enough energy to wear me out from just watching her go.... It is still hard to believe that Pseudo is living inside her.

Sleeping while being shaken like crazy?!

Since the hurricane has passed we have spent a lot of time outside. The weather here is finally comfortable instead of hot and humid. Madeline loves to pull individual weeds, wave them in my face, and tell me " look fower" ( Look a flower!).

She is also getting better at riding her tricyle that we bought for her on her 2nd birthday. She tends to forget the "steering part" and enjoys looking around as her feet are doing the petaling. She is very intrigued by her feet and how they seem to help "move" the bicycle. She stares at those pedals as her feet do the work. Her 2 year old mind looks as though it is contantly trying to figure all of this out.

Steering is not a priority...more things to look at.

Her "fascination face" as she watches her feet push the pedals....

We hope you are enjoying the last few days of your summer....

Semi-Wordless Wednesday

2011-08-10T14:01:00.004-04:00

And then there were ...BANGS....

A few days ago I went on a whim and decided to cut her hair to make bangs. Her hair is thick and was constantly hanging in her face. I think she likes her new cut. She can actually see now. It is amazing how adding bangs can make her look so grown up......

Culture Results...

2011-07-30T13:27:00.003-04:00

It's been a busy week keeping up for a non- eating toddler, managing calls from the clinic, and just living life around here. It's been a week of self indulgences to help soothe the mind of might may be coming. And again, we got the call that Madeline is still culturing Pseudo...

It's been 8 months since we first heard of her culturing it and as time goes by we all loose a little hope that we can actually ever get rid of it. At every call that comes in from the clinic with a positive result, we all continue to feel the lack of control we have over this whole situation.

It's still hard to admit that you can only do so much to help your child. And for whatever reason- the inhaled antibiotic (TOBI) that she is on seems to be just managing the pseudo (not killing it entirely). Her cultures show the same amount of pseudo through the past 8 months. And although it is good that her Pseudo growth doesn't seem to worsen, it still doesn't help that it isn't lessening it either. And now we all begin to struggle with: Will it EVER go away?

There is always hope and we continue to hang on but time is a killer. With each passing month after completing another round of inhaled antibiotics, we loose more hope. And with each month that Pseudo stays, we all worry about what is actually going on in those lungs....

The reality is that Madeline looks great. In fact, after strangers and old friends learn that she has CF and has cultured Pseudo, we often hear..."But she looks so healthy and so great..." On the outside she looks sooo healthy. She has an unbelievable amount of energy. She runs till she wears ME out and it seems that there could be no possible way that this bug found it's way inside of her. And for all of this., I am so grateful. I am so grateful that even though she is culturing it, she isn't symptomatic....

I even find myself looking at her and thinking. "How on EARTH could she be culturing pseudo? Did they switch the swabs after sending them to the lab?" But maybe this is the worst part.... because inside we know that Pseudo is known for damaging lung tissue which is often why pulmonologists (and m's doctors) are so aggressive at treating it. So even though she looks great on the outside, we just don't know everything yet.

At the start of August, we will again start a new month of inhaled antibiotics to try to combat this beast again.
The process of hope starts over again. And after hearing the positive culture results we will jump back to our excessive hand washing, avoidance of those that are sick, and antibacterial wiping routine. Because really....it just could be worse. In the end, we know that what we are doing for Madeline may be just the best we can do...even if we don't like the results....

Clinic

2011-07-22T22:38:00.000-04:00

We went to Hopkins this morning to have Madeline checked out and cultured again for Pseudo. Madeline was very happy when we arrived at the clinic. She was jumping up and down in the waiting room, smiling at the nurses, and waving "hi" to the doctor. This was a huge "first" for her. Usually she has screaming fits as soon as she get the first look at the clinic let alone the medical professionals inside. I never blame her though for her screaming fits- She puts up with doctors regularly poking her with needles, pushing on her tummy, swabbing her throat (making her gag), and anything else is up their sleeve. Madeline (and most cfer's) endures more doctor visits and hospitalizations in the first 10 years than probably a healthy child does in the first few years. She was very happy today and that made it a lot easier to endure yet another clinic visit. Every visit marks another reminder of how Madeline's health can be so delicate....

Clinic waiting room...

Daddy and Madeline waiting...

Overall, the check-up went well. The doctor listened to her lungs and said they sounded "clear." She is in the 79th percentile for weight and 86 percentile for her height. She is bound to be one tall girl since she nearly grew an inch in 2 months! We were pleased that she seems to growing and gaining weight well.

We are hopeful that in the coming months we can encourage her to drink milk. The clinic was a little worried about her calcium intake. Even though Madeline does eat yogurt for breakfast, it seems as though this is not enough calcium for her at this age. We have tried to flavor her milk or offer it in different sippy cups but it has never worked. She simply just pushes it away. Madeline enjoys drinking water with EVERY MEAL. Water is simply her drink of choice. I am hoping that over time we can change this. :)

As far as Pseudo goes...her culture results will come back sometime next week. I will update as I find out the results. We are hoping for the best, but truly expecting to see Pseudo show it's ugly self. Many thanks to everyone who has posted encouraging comments on facebook and our blog. We truly appreciate all your thoughts. Your comments help keep us going!!!!

"That" time again....

2011-07-19T15:50:00.001-04:00

It is that time again...
Today Madeline turns 29 months. She is just one month shy of being 2.5 years. Time is flying by with her but, I must admit that I love watching her act more like a grown child than a baby. She is developing a love for "coloring." Her version of coloring is more like multi-colored hash marks but, she still amazes me. She has a natural grip with the crayon and is able to control her marks very well. She goes through each crayon making a solo mark for every color, lines them up on the table after she is done in order, and cocks her head to the side to see if the mark she made looks right. Moments like these I want to bottle up and keep close to my heart. Her personality develops more every day and it's so interesting to watch...

Colored marks!

Can you tell which crayons she has used? (*Note the ones lined up!)

It's that time again...
CF Clinic for Madeline is on Friday of this week. It's been nearly 8 months since Madeline first cultured Pseudo and I have a hard time thinking about what this new culture will show. We continue to hope that this time might be the "magic" culture that is negative for Pseudo. Whatever the outcome, I know I have little control over it. Madeline continues to look amazingly healthy and happy. We just hope that the doctors at clinic feel the same way.....

Wordless Wednesday

2011-07-13T10:38:00.004-04:00

Our male cat, "Houston" always comes when he hears that compressor!

Summer Update

2011-07-06T12:52:00.001-04:00

Yes, it has been a long while since I entered the blogging world. I don't have a ton of news to tell - Life was been good to us lately though. All 3 of us have been enjoying life without letting Cystic Fibrosis get in the way too much....

Madeline's been busy having play dates with her friend, Sylvie. She visits every Tuesday at our house.

While the girls play, us moms get some good chatting time. There is nothing better than having a good friend to talk to regularly that shares the same "mommy frustrations" as you do.

Sylvie is 6 months younger than Madeline but they compliment each other very well. Sylvie and her family
were friends with us before we moved. In fact, Lauren (Sylvie's mom) and I shared a common bond- the military.

At one point both of our husbands were on the same navy submarine and deployed many times. We were so lucky that our families moved together near DC and that our children are close in age. It's been a great friendship and I value how understanding they have been about Madeline. It's hard to find friends that genuinely understand the ins and out of CF and germs- taking initiative on their own to wash their hands, call if someone may be sick or just plain being there to listen. It's been such a blessing to have them as friends.

In between play dates and house projects, we have been visiting family this summer. We spent the fourth of July at the Delaware shore with my family. Madeline has turned into a true "beach- goer." She has gotten use to the feel of the sand and loves to make "stick castles".

"stick castles!"

We also enjoyed some fireworks on the beach for the 4th of July....

While having fun this summer we have squeezed in time for CF. Madeline recently finished her
month supply of TOBI (inhaled antibiotic) on the 4th of July. For the next month, we get to enjoy the "extra" half of a hour that we gained from no TOBI! Then of course, we will start the next cycle up in 30 days. It is our hope that once we return to Hopkins on the 22nd that the Pseudo will be gone.

We are optimistic that Madeline is getting rid of Pseudo. She looks healthier, chubbier, and happier than ever. It just seems hard to believe that her lungs are still growing this bug. We have a lot of hope for a clear culture soon.

Hope everyone is enjoying their summer!

Semi -Wordless Wednesday

2011-06-15T21:21:00.001-04:00

Magic blanket that holds TOBI..

Strike a pose...

Shopping cart entertainment....

Results are in.

2011-06-04T12:53:00.000-04:00

Madeline's doctor called today to give us her culture results. It's been a full week since the culture was taken and Jack and I have had mixed emotions about what that means. Our mind plays tricks on us based on what we know. No word from clinic could mean good news or could mean that they are debating what to do next. Time is a killer when it comes to culture results for CF patients and their families. It's a long waiting game that makes you throw your emotions all over the place. What will this result say? Will it be better? What if is really is gone? Suddenly all the "what ifs" come flying you at one time. So today it was....

It is still there. That nasty beast is somehow still there.

We just finished up our 3rd round of inhaled antibiotics (with one month off before starting the next dose) This will mark nearly 6 months of a war with this nasty beast and after all this time it finds a way to still stay there.

And because it still is there it makes my mind go in crazy motions. When we got the news that Madeline had cultured it in December, Jack and I almost felt like we were defeated and shot down. This was the bug that we had been trying to avoid since we first learned Madeline was diagnosed with Cystic Fibrosis. All my mind could think about was the irreversible damage that this bacteria can have on a CFers lungs, how incredibly hard it would be to get rid of, and of course how I had somehow failed in not making her environment more sterile. It was simply devastating...

After round 1 of inhaled TOBI I became hopeful that we had the best chance at getting rid of Pseudo because the growth on her culture was "moderate." The doctors were optimistic that she was gaining weight well, was not symptomatic, and could just plain beat it all. the. way. Results.. came in that said "very slight growth." Clearly we had kicked it pretty good and it was possible there was just a little left....

After round 2 of inhaled TOBI results came in...."slight growth". Clearly it didn't get better. I was loosing hope that we were going to kick this at all.

Round 3, it was suggested that we try a new drug that was just put on the market for CF patients battling Pseudo called Cayston. It usually is not given to children under 6, but Madeline's doctors felt like they needed to switch up the meds since it appeared that TOBI wasn't killing off the Pseudo as much as they had hoped. We felt a little optimistic that maybe this WAS the drug for Madeline. This would be one that her body would respond to....

...results came in this Friday..."very slight growth."..and here we are. We were also told that Madeline's type of Pseudo is resistant to Cayston. (which we just used last month). This means that TOBI (the drug we used for 2 rounds in the beginning) is the only drug that has a chance at killing it off... I have begun to choke down the reality that we may never get rid of Pseudo and that it may stay there forever... which if often can do. But it isn't too often that children as young as Madeline keep it and cannot get rid of it at this age.

CF has an amazing way of making you feel powerless and that is exactly how I would describe my relationship with pseudo. We are trying to defeat this beast but, the options are simply running out. My worry has begun to turn to acceptance. I have begun to accept that I cannot control this nasty beast....no matter how many times I wash her hands, give inhaled antibiotics at the targeted times, and simply do everything I can imagine to protect her from this bacteria that is just. plain. everywhere. It's hard to swallow that you simply cannot "fix" your child. As moms, it seems that is our "job."

I have begun to accept that we are on a weary road again of so many "unknowns" and we have been lucky enough to have almost 2 straight years of "managed CF". And now we are getting ready to "fight" again.We will do 3 more rounds of TOBI. This will add 25 minutes twice a day to her already 2 hours of treatments. She will spend nearly 3 hours per day sitting and doing treatments thanks to Pseudo. I wish I could "fix" this part too.

If things get worse in the next few months and she develops symptoms from Pseudo she will be admitted to the hospital. If after she 3 rounds of antibiotics she does not get rid of this nasty beast, she will also be admitted for IV's. We are running out of options and right now I can only hope that the next 3 months will bring something magical to her lungs.

We are in for the big fight. I may accept that I don't have control of Pseudo but, I will not stop fighting for Madeline. Thanks again to all of our family and friends who continue to ask questions, inquire about Madeline, and lets us know that we are not alone. Our strength comes from you....

CF Clinic Check- Up

2011-05-30T10:53:00.000-04:00

On Friday, we all made our hour and a half drive to John Hopkins for Madeline's Cf Clinic appointment. This would be appointment after we have completed 3 round of antibiotics to battle Pseudo. We were all hoping that this upcoming culture comes back negative for the nasty bug. We have been traveling every 6 weeks up to Hopkins to re- culture Madeline in order see if "this time" would be the one that killed that nasty beast.

M waiting to been seen...

Although, we won't have culture results back till late next week, we are hopeful that Cayston did the trick. We were able to talk to Madeline's Dr about how we felt about Cayston and how we thought was a better drug for her. We explained how well Madeline reacted to receiving the drug (ie- not screaming and crying when it came time for it unlike TOBI), how little she coughed or how it seemed to affect her mood or eating ability after having it administered, and how fast and easy it was to administer it compared to TOBI. The only downside we expressed to her doctor was that the Cayston required 3 treatments per day compared to TOBI only requiring two.

Madeline's doctor, Dr. P was very excited to hear our feedback about how Madeline reacted to the Cayston, especially since this drug is not often given to children younger than 6 years age that culture Pseudo. Hopkins embraces drugs like this and likes to "offer" it to their younger patients as an alternative to TOBI if they don't see negative culture results after a few times. We realized that the FDA has not tested Cayston on children younger than the age of 6, but we also understand there are so many medications that haven't been tested for children as young as she is that hs is currently using like Pulmozyme.

We appreciate our clinic's view and feel as though we are getting the best care at Hopkinss especially being that they are a large research hospital. They always seem to be leading new research in CF therapies and talks. Our choice to make Hopkins Madeline's cf clinic was one of the best decisions we have done.

We were very happy with Madeline's stats at her appointment. She topped the scale at over 30 lbs and measured 91.5 centimers. She grew nearly 2 cms in 2 months. It was nice to hear that her weight has been keeping up with all her tall growth! Madeline is remaining in 80th percentile in weight as she grows. It's great to know that she can still grow tall yet pack on the pounds to be at the 83rd percentile for weight and 90th for height. We were so very happy to see her still maintaining her chub!!!

This is how we entertain M during clinic...

So, now we wait for results. We hope for the best. We hope that we don't have to continue this battle with Pseudo. But, we are very thankful for great sounding lungs, great weight gain, a great team of doctors at Hopkins, and a otherwise "healthy looking" little girl!

This is what happens after all the emotions subside after clinic.

"No refills please...."

2011-05-25T10:36:00.000-04:00

It's Tuesday. The phone rings. The lady on the other end of the phone explains that she is from "Foundation Care" and she is just calling to see if Madeline needs another refill on her prescription of Cayston.

I pause. Think about this for a second, then explain that we won't know if she needs another refill for Cayston until after our clinic appointment this Friday. I tell her that next week we should have results from her culture, thus tells us if the Pseudo is still there. Then, we may know if we need a refill.

I stand there with the phone for minutes after explaining this. She thanks me and says she will check back that week to see if a refill is needed. I am stunned.

As nice as that lady was, I wanted to call her back and yell at her. I wanted to tell her how much she just put fear back into my mind. I want to tell her to go "climb a tree" because the doctors won't be calling her anyway.

I hope I never have to hear "Foundation Care" on the other line. . I am hoping that the only time I talk to them is to say: "Nope she doesn't need Cayston. She got rid of the Pseudo." I am imagining the matter of factness in my voice, the feeling of satisfaction, and the realization that I don't have to rely on any insurance company's approval to pay for this six thousand dollar medication.

My hope is Friday is "that kind of day."- A "no pseudo kind of day."

My hope is that the week after is filled with a phone call direct for Hopkins saying " The culture is clear."

My hope is that I won't have to worry about what is the "next step." Because after 2 rounds of inhaled TOBI and 1 round of Cayston, there shouldn't have to be a "next step." Madeline should be able to be free of extra treatments and the ability to live a more normal life full of playdates and more outside time.

And so, we visit Johns Hopkins on Friday for our "revisit" to see those lungs are feeling looking, I am just plain hopeful about this visit. Hopeful that she gained weight, is clear of pseudo, and her lungs sound clear.

I can't wait to say to "Foundation Care" ......"No refills please".....

Let it be said.

2011-05-22T22:21:00.002-04:00

Let it be said that ...

It feels amazing to be supported by your closest friends and family to support a cause that may one day cure your daughter of a life-threatening disease. It it mind blowing at times to see how gracious friends and family have been to donate their own money to help beat this disease to give Madeline and others battling CF a way to hope for a CURE.

Throughout the past few months and today I have felt all of these emotions. I feel the graciousness of others daily. I am constantly reminded that we are not alone in this journey as scary and as hard it can be at times. Days when Madeline is fighting Pseudo, not gaining weight, coughing, and not eating are hard days. Our friend and family will continue to support us through those days... like today's walk.

Everyone is here supporting us. We are not alone. We all fighting to find a cure for her. We are all fighting to keep her healthy.

And...we have some of the most caring and supportive friends/amily than anyone could ask for. Every donation, every dollar, every email/phone call/text inquiry asking how she is doing, every effort to protect Madeline from germs and do what is best to keep her healthy is never unnoticed. It is valued, appreciated, and it continually moves me to tears. Let it never go unsaid...
'

Today I realized we have such an army of people holding our family up.It has been amazing to watch those people around us go to LONG lengths to just show how much they care about Madeline and what they are willing to do to show this. We could not be as strong if it wasn't for all of YOU.

So let it be said that ...we are forever grateful for all of you. We need you through our journey and we thank you!.

We will beat this disease because you supported us.

Thank you.

Love to you all-

-----

We had a great walk and celebration afterwards to raise money for the Cystic Fibrosis Foundation today. Thanks again to everyone that donated or walked. We hope that soon enough a walk won't be needed because we will find a cure.

Here are some great pictures of our walk this morning.

Madeline wanted to "run" for a cure today.
My little CF fighter never stops fighting.

Thanks for continuing to "fight" the big fight (CF) with us. We need you! <3

My girl

2011-05-18T18:13:00.000-04:00

Life has been a little crazy as we are preparing for the Great Strides Walk this weekend just outside of DC. We are welcoming and hosting family and friends. I haven't had much time to blog but there always seems time for pictures of M.

More to update on next week after the craziness subsides... In the meantime....

Snapshots of Madeline....

Silly girl with a messy shirt!

Gotta get down low to check out my finished masterpiece.....
This is serious work!

My "looking like she grew up too fast" little girl

"Baby" on my lap

Semi- Wordless Wednesday

2011-05-11T15:59:00.000-04:00

Disclaimer: I do not encourage anyone to do this at home. We just do it for pictures. :) See below:

Our "boat beer girl"

Tomorrow

2011-05-10T10:10:00.001-04:00

Tomorrow is the last day for this photo contest we are entered it. I know you are sick and tired of hearing me ask for your votes but we need all of them to stay in the lead. We have been going back and forth with another contestant.

If you haven't voted- please do! I promise to stop bugging you by 5pm tomorrow.

Here is ALL you have to do: We still need your help! We are in2nd place for this photo contest but could be in 1st. Voting ends at 5pm tomorrow.
All you have to do is-

Login to facebook.

Type in Stanley Martin Homes in the top window.

When you get to the stanley martin page click the LIKE button the top of the page.

Click on "wall" on the left side.

Then find "hit me with your best shot"....and click the link

Find the photo with the little girls room! That is Madeline's room (our 2 year old cfer!)

We need everyone's vote!!! Le tme know if you cannot vote. I would love to give you more directions!

Thanks again!
Thanks so much for all your help. It means a lot to us!!!! Pass on the word!

Photo Contest

2011-05-07T23:09:00.000-04:00

So, we recently entered a photo contest on facebook through the builder of our new house. They are offering customers to post a photo of a feature in their house that they love. We choose to enter Madeline's room in the contest and we need your help. As of Saturday, we are in the #1 slot but we need your help to stay there. There are a few photos that are trailing us and may take the lead if we don't get more votes.

In the past two months we have spent time organizing and coordinating Madeline's room. We thought it would be a perfect room for the photo contest. No we just need your help!!!

If you have a facebook account just follow these easy steps:

Follow this link ------->here.
Then, log in to your facebook account at the top of the page.
Then click the "like" under the photo.

THAT IS IT!

Thanks so much to all of you that have helped us get this far! We feel so lucky and are hopeful that we can make it even father in this contest. Please support us!

We thank you so much!!!

Trying to believe...

2011-05-03T21:34:00.001-04:00

Madeline's 28 day supply of Cayston (her inhaled antibiotic to treat Pseudo) is officially done. I have some crazy mixed emotions about this though. Initially, I was extremely excited that we can have more of a life now- with one less treatment to do during the day. But then I feel the irrational panic of what could happen now that they meds are done....

Now, we will go for almost a month without anything treating this bug and then return to clinic for the dreaded culture swab. (CFers usually take off a month from the antibiotic so their body does not build up a resistance to these drugs since there are so few drugs that can treat Pseudo.)

So, My mind is playing evil tricks on me. I have been imaging the PA running around her lungs creating havoc now that the Cayston is stopped. She's had pseudo for 6 months straight. I have a hard time thinking about when her lungs will say "Enough is enough.." Isn't that what all CF moms fear? When the going gets to be too much..and there isn't much more WE as moms can do. I worry about that defeated feeling....

I am beginning to wonder if Pseudo has decided it wants to stay in her lungs f.o.r.e.v.e.r.

Don't get me wrong-This Cayston stuff is amazing! It nebulizes easier and cleaner. It takes half the amount of treatment time as the TOBI to nebulize (2 minutes as compared to 4 minutes). Madeline actually likes it.She holds the mask to her face even after the treatment is done.(I can only hope it makes her feel better.)It makes Madeline cough at times....helping the Pseudo clear out of her lungs better....

But....as much as I want to believe that Cayston is Madeline's magic drug that will rid her of this nasty beast, I also realize that Cayston is the only other drug we hadn't tried besides IV antibiotics to kill the pseudo. We are checking off all of of options of the list to treat this thing. So, if this doesn't work and the culture comes back positive, then what???

I hate it when it feels as though your options have been tried and tried again...

So, in the meantime I am trying to believe that Cayston has already worked either by eradicating or lessening the amount of Pseudo. I am trying to believe this so my mind doesn't wander....because really Madeline looks and acts healthy. In fact, no would could believe after spending the day with her that she is battling this bug.. She is still her amazing, funny, and happy self...

Swing!

2011-04-30T22:25:00.013-04:00

After a day and a half of non-stop work between my dad and Jack....Madeline has a swing set!

We ordered the set a few weeks ago after touring a few companies play sets.
This set seems to offer the best price, size for our yard, and play items. We
wanted somethingthat Madeline would enjoy but, we also didn't want it to
consume our backyard. So we endedup with the modest set and, I have to
say I am very happy with it.

We let Madeline run into the yard to find....a SWING SET....

Taking it ALL in.....

She was surprised...and EXCITED!

Did I mention that Madeline loves to swing? When you say the word "swing"
or ask her if she ever wants to "swing" she immediately gets up from whatever
she is doing and starts jumping with excitement. It's very funny and cute at
the same time. It is surely one of her favorite things to do. So, this swing set
made her VERY happy.

Ready to go!

The treehouse was a huge hit too. She enjoyed bringing out all her blocks and
building on the treehouse while the sun set.

Building on the treehouse...

We are really beginning to feel settled into our new house and yard. We
have dreamt for years of having a yard and a swing set for Madeline to
play in. After 4 moves in 5 years and a crazy military lifestyle, it was all
worth it in the end for something great like this. Finally life has settled
down for us and this swing set was a small reminder of how our life is
finally stabilizing.

Good Riddance Veins

2011-04-28T10:53:00.000-04:00

One leg down, one to go...

Today marked the day that I finally got to have my painful varicose vein in my left legs closed. It was a fairly painless procedure and although I have some discomfort in my leg from the micro incisions that were used to remove the vein, I couldn't more more happy that I did it.

I had to wear awful compression stocking for 6 months from the time I wake until I hit the bed. These things are marketing for older men and women. I find myself shopping with the best of the elderly in these shops that sell these stockings. They are super tight and squeeze you skin. They are surely not comfortable and incredible itchy. The waist on these things come up past your belly button. Not quite the style I was hoping for. But, I put all this aside when I was told back in October of 2010 that I have severe vein reflux and the only way to help myself was to wear them.

Wear them- this is what I did. Insurance companies will not pay for "vein ablation" or microphlebectomies until ( my procedures)the patient wears this trendy stockings for at least 6 months and testifies that no, the stockings did not solve the problem. The truth is that they NEVER DO. Varicose veins are hereditary and over time they just begin to get worse- stockings just help manage the pain.

So I waited the long 6 months and over time the pain from from veins just got incredibly worse. It has been hard standing for periods of time, chasing Madeline around, and just doing ordinary tasks around the house without grabbing my legs in pain.

Here is a great picture and short explanation of varicose veins...

As you can see, healthy valves allow blood to flow in one direction. When valves do not function properly blood flows backward, creating strain and damage to vein walls. This results in varicose veins.

(taken from http://www.veinclinics.com/)
So I had a combination of two procedures today. Vein Ablation see below:
http://www.vnus.com/patient-info/closure-procedure.aspx

And two microphlebectomies...

For those of your curious....
What are microphlebectomies?

Microphlebectomies are tiny incisions (less than the width of a pencil) through which varicose veins are carefully teased out. The incisions are spaced about every 2-3 inches or so, so the procedure can be tedious and time-consuming if veins are scattered over a wide area. Stab avulsion is another name for this technique. The simplicity, minimal expense, and rarity of complications with microphlebectomies give this technique an important continuing role in varicose vein treatment.

Hopefully within a few weeks I will be chasing Madeline again- at least on one leg pain free. Cannot wait to get the other leg done to feel more relief. Pictures coming soon...once I get these legs more picture ready!

Easter at the Beach

2011-04-25T10:52:00.000-04:00

We had a great weekend at the Delaware Beaches for the Easter holiday. The 3 of us were able to spend time with my parents at their house there. We always feel so lucky to be able to spend time with family through many of the holidays. Madeline enjoyed her Easter basket full of all kinds of goodies.

I frequented Target for the last few weeks to buy dollar toys in their discount bins. Madeline enjoyed
checking out her new trinkets and of course her eggs!

Diving for an Easter egg...

Our family enjoyed an Easter brunch. YaYa (my mom) and Madeline waiting to be seated....

( I love this picture of the two of them!)

After brunch we took advantage of the nice 70 degree weather.
Madeline enjoyed running up and down the streets near my parents house...

She LOVES to run....

Running with Daddy...

Running for the beach ahead...

We had a great weekend full of birthdays, anniversaries, an Easter celebration, great family time.
Hope everyone had a great Easter...

Yes, this is the ONLY picture of Madeline and I that even turned out.
I gave up after she was NOT into the picture taking....

Big Girl Bed Night # 1

2011-04-21T20:37:00.001-04:00

Yesterday, Madeline's "big girl" bed arrived via J.C. Penny delivery. It was great because not only did they deliver but two guys from the company actually put the bed together in her room. The delivery cost included this service so I cannot complain too much. Since we moved we have bought a ton of IKEA stuff which has been fun but also time consuming since you have to do all the assembling yourself. This was an added bonus.

After getting out the bedding, toddler safety rails, and pillow the bed was ready for Madeline by the time she usually goes down for the night. We were so impressed with her excitement when she saw the toddler bed a few days ago and managed to sleep really well in it every night. We were hoping for just as much success last night. I was a little skeptical though since not only were we introducing a new style of bed, we were also introducing her to a completely new bed. (Her toddler bed was just her crib converted with different rails.)

As you can see, she was VERY excited, yet again.....

She had to bring her favorite blocks to bed with her!

She has always adjusted well to most changes in her life. (new places and environments) It amazes me that she shows excitement when she notices changes in her environment and, it stuns me that she also behaves well to these new changes after she gets over her intial excitement....

So we left her in her new bed for the night....

And I went in to get her this morning....

asleep!

She didn't wake up at all or freak out. She's got a lot of bed to move around in and those rails worked well.
She never got out either! So all in all....

a success again!!!

Did I tell you how much a love this kid?!

Wordless Wednesday: A Child's Masterpiece

2011-04-20T10:06:00.001-04:00

Mrs. Potato Head - created intirely by Madeline

Side profile of Mrs. Potato Head

Play yard!

2011-04-15T14:25:00.000-04:00

Yesterday we finally got our privacy fence installed. Our house sits on a corner lot and is near the beginning of the development. We get a lot of traffic on the side of our house which is exactly why we wanted some privacy in our back/side yard. I am very grateful for this fence because we had to jump through a few hoops to get here. I ended up spending afternoons at the county office building to get approval for storm drain easement, fence permit, and approval for a sight distance easement. I know it sounds very technical but really it was just annoying. It turns out that our beautiful yard that we paid extra for has a lot of wires and drains underneath it, thus requiring countless hours at their offices. Our HOA also had to approve this fence so surely we worked hard to get here.

side view

front view

We tested out the yard after the installation and Madeline totally approved. She ran around the fenced in portion of the yard saying "ence" over and over again for fence. She insisted in using her ball in the new fenced in yard. I was so happy that she was contained. As you can see from the pics, we have roads on all sides of us. She was always running into the streets before.

Happy Weekend everyone!

Toddler Bed- Night #1

2011-04-13T16:05:00.001-04:00

Well we made it through Madeline's first night in her toddler bed. I think mom was more anxious about it than she was. In fact, once Jack converted the crib into the toddler bed Madeline walked right up to it and acted like she knew how to get into the covers.. She climbed in and did this completely on her own....

It's almost as if Madeline was just waiting to tell us, "Convert that crib because I am going bounce right out of there soon if you don't..." I was a little skeptical how the night would go when she knew it was actually time to go to sleep. Liking the new bed and thinking it is cool is one thing....but how would she do later when we all wanted to sleep?

So, we decided to get her ready for bed and go through her nightly routine. After Jack spent the whole night securing tables and dressers to the wall, attaching a baby gate to her bedroom doorway, and countless other safety features....we were ready to test out how the new toddler bed would work for Madeline.

We let her gather some toys and she....

played, and rearranged.... The night grew later but she never tried to leave the bed. I had a long talk with Madeline when I told her goodnight about how we stay in our bed because it was "night night time." I thought I was crazy believing that any of this would work talk or no talk but...

As she continued to play and wear herself out she grew tired and REMAINED in the crib. Jack and I purchased this super high tech video monitor that allows you to pan the room using a touch screen tied to camera. I would highly recommend this camera to any parent that lays in awake bed at night checking on their child until they fall asleep. I cannot sleep until I know she is out. This was so worth the big bucks that we paid. The manufactures even compare the video screen to an iphone- it's just that cool to touch and activate.You can read about it here. We purchased ours at Target. This video/monitor helped us keep an eye on her because we were unsure how we felt about letting those side rails down. I mean how would she do?

She fell asleep! We didn't have do anything! She stayed up for quite some time in her room and I continued to check on her by stopping by. We were simply stunned by how incredibly big and brave she was. This morning I woke up to my new video monitor showing my little girl asleep in her bed not her crib. It was clearly evident that she was so ready for a bed.

Now, if I can just wrap my mind around the idea that she is growing up sooooo fast!

The Great Escape...

2011-04-12T16:35:00.001-04:00

We got back from the beach yesterday late afternoon to a grueling 90 degrees her in DC. We had nice beach weather and enjoyed our time as family. It was nice though to get back to our own house and settle back in early before our week started. It took a few hours to unpack the car and set up all the meds for Madeline but we did it.

Last night was a tough transition for Madeline since she was having so much fun at the beach. It was one of those nights that she wasn't too interested in going to to bed at all. In fact, lately this has been a favorite of hers- not wanting to go to bed. She will scream, gag herself, and do whatever it takes to either have two things happen. One, she gets to stay up and not go to sleep with us or two, she gets to sleep in our bed.

Yes, this all started when Madeline turned 2. She has discovered that joining her parents in bed at 11:30 at night ( or possibly later on a weekday!) is just how she likes to fall asleep these days. This method I must admit was not the best, BUT she would peacefully agree to fall asleep with us rather than carry on in her crib, thus allowing US TO GET SOME SLEEP. It was hard not to accept that this wasn't the best way if we could actually sleep...

Fast forward til a few weeks ago...Madeline had decided one night that she didn't want to go to sleep at all- not in her crib or with us in our bed. Oh, the dread...This has continued on and off for our nightly routine with her. We have seen her casually place her foot over the crib railing as if she was going to hop on out. This of course got Jack and I thinking about what we needed to baby proof in her room and of course, would she ever actually escape on her own? We contemplated converting her crib to a toddler bed and all the endless possibilities but decided that it wasn't time yet. I mean, she wouldn't actually hop over her crib this soon....

YES. She would. She did just that last night.

The night was playing out like usual. She didn't want to go to sleep in her crib. We gave her some toys, shut her door (thank goodness she doesn't know how to open "lever" style door knobs yet!), continued our unpacking ritual. It was fairly quiet and not much noise was coming from the monitor until....

BAM!

It sounded as though someone dropped a piece of furniture and it hit the upstairs floor. I looked at Jack and said, "What is THAT?!" We both shot each other looks of panic because really deep down inside we know what that was!!!!

Silence followed by screaming...

Madeline was laying on the ground just in front of her crib screaming. She had taken the plunge only it took only about 10 seconds before she was off playing with all the toys in her room. Clearly she had a mission and it was accomplished. She was so happy to be amongst her toys. Can you see why she was aiming for that hard floor? Look at what she wanted.......

Moments after she made her escape. Can you see how happy she is that she succeeded?!

Happy as can be now that I have my toys....

This was our sign that our little baby girl is growing up. We will spend most of tonight baby proofing her room and converting her crib to a toddler bed. The order is already in for her new twin bed.

Suddenly my escape artist is feeling accomplished and grown up now, and I am just thinking....
where did all the time go?

She even wanted to help her Daddy install safety locks!

(DISCLAIMER: Madeline by far is a perfectionist when it comes to doing things. So, it should be stated that she does not attempt anything, until she feels like she has a clear idea of how she can succeed. She will plan it out, learn more about it, but will not do the act until she has it mastered. She spent many nights putting her legs over the railings of that crib figuring out her much needed escape. But never did she try it until she knew she would succeed. Well she succeeded and once that happens she becomes her own master. She will continue to show off her skills over and over again. She has clearly demonstrated this pattern with walking, stacking blocks, talking, etc. We have an official escape artist on our hands who is just waiting to refine her skills over and over again!)

I am holding on for dear life! ;)

Beach Life

2011-04-10T00:52:00.000-04:00

The stresses are lifted. I feel free again. I left my worries behind in Virginia. Suddenly this salt air hit me and ,I feel totally rejuvenated. It is amazing. The beach always lives up to my expectations. The expectation that I will feel happy because this is the place that allows me to feel comfortable, relaxed, and worry free. I feel like I have broken free. I think all 3 of us feel like we are free...

Madeline running to the beach...

We have settled into this "beach life" the past day and a half. I feel so grateful to have parents who decided to share this beach life with their children. Coming back to the beach always brings back such great family memories. I cannot imagine a life without summer salt air...

So happy to be on the boardwalk...

We have eaten the greasiest pizza and nibbled on the crispiest boardwalk fries. We have chased Madeline up and down the boardwalk. We have shopped the outlets and eaten at some of the best restaurants. We have laughed and we have talked. We have enjoyed each other. And it has been just what WE needed.

We have watched Madeline squeal with delight at the sight of the ocean. We have watched her run crazily up and down the boardwalk sometimes wondering if we will ever catch up to her.

Enjoying a walk with daddy.

We have watched more movies in the past 2 days on the couch than we have in the last 6 months.
We have finally allowed ourselves to relax. We are smiling again.

No house chores. No unpacking more moving boxes. No home improvement projects. No endless laundry.

New boardwalk toy!

It's true. We have been taking all of our minutes and using the time we have to overwork ourselves around our new house. We have been taking all of our worries about Madeline's health and taking it out on each other. We have truly not allowed ourselves to take a break.

And sometimes just running away from it is exactly what we need.....

Salt Air Therapy...

2011-04-07T17:01:00.000-04:00

I can feel all the weight lifting off my shoulders as I begin packing for our weekend trip to the Delaware Beaches. Dewey Beach, DE is my 2nd home, the place where I was married, the place that I lived and worked through high school and college summers. Jack and I have shared memories since we were married there and, it has become our place of relaxation. Growing up, my grandparents owned a house on the beach and after I entered high school my parents ending up buying their own vacation home here too.

Dewey Beach, De

We are packing up early, throwing all of those inhaled meds/nebulizers in the car and leaving mid-day friday to catch a breath of the fresh, salt air. As most parents of cfer's know, packing is a very cumbersome task as we have to haul enzymes, vests, nebulizers, refrigerator meds, and so much more than the average family would not need to pack for a weekend trip. But really, none of this matters.

All that matters is that the three of us can focus on being a family, separating ourselves from chores around the house, and enjoy the place that makes us all relax a little more. It's been a busy and stressful few weeks since we got Madeline's positive culture results back. We are hoping that these few days gives us a break from thinking about the stresses that CF has recently brought to our family.

2010

There will be walks on the beach. We will eat some of the greasiest pizza and french fries on boardwalk.
We will not be logging on to facebook or blogger (how will I make it?!) since internet is not available at the house there. Our life will be simplier for those few days and I am convinced it will make all the difference in the world.

We will get to watch Madeline squeal with delight and rush towards the water. She loves the water and the ocean. We will get to enjoy. We will get to enjoy each other.

Memories will be made. CF worries left behind.

Beach, here we come.

Updates and more posts next week everyone. Have a great weekend....

Cayston

2011-04-06T21:50:00.001-04:00

It's been a busy few days learning the "ins and outs" of inhaled Cayston. Luckily, I have had Margaux's help in learning more. She started Cayston with her sweet little boy, Ben a few weeks ago so it's been nice to have someone to talk to about this drug since it seems that not many CF Centers are dispensing Cayston to their patients under 7. We recently based our new move to the suburbs of DC just so we could attend one of the leading Cystic Fibrosis Centers and we couldn't be any happier that her clinic offering to do alternative medications such as Cayston to help M battle Pseudo. John Hopkins has more than exceeded our expectations, and for this- we are so thankful.

Cayston arrived yesterday afternoon via the Fed Ex guy. I quickly opened it and let Madeline take a look at her medicine that she would be inhaling for the next 28 days. She was very intrigued by it. I am even more intrigued to see if it has the power to kill this nasty beast.

After 2 rounds of inhaled TOBI and Pseudo still lingering in her lungs, I had given up hope that TOBI was Madeline's lucky drug. I have heard from other adult Cfer's that TOBI just never worked for them and oftentimes it took Cayston to get their body to respond to the Pseudo. I am trying to be very hopeful .But, I am reminded of what we are battling every time I open the refrigerator to see our "case" of Cayston taking up almost a whole refrigerator shelf. I find myself staring hard at these tiny vials wondering if this will be our "magic" drug.

Note the margarita mix below and the beers above?
They help me keep my sanity. :)

After some crazed thoughts about TOBI and Cayston, I found myself stumbling on this article. It discusses how our "magic" drug may actually be what is taking up space in our fridge- Cayston. I do recognize that the
study was done by Gilead who are the manufacters of Cayston ....which makes your wonder if it's the study is totally believeable. I want to believe it.

Altera Neb with Cayston

I want to believe that Cayston will kill Madeline's psuedo. I want to believe that a cure is coming sooner than later. I want to believe that Madeline will live a long life. I want to believe all of this.

So Cayston ...do your magic. Make me believe that all of these things are possible.

I want to be a believer.....

My Little "M"

2011-04-04T17:39:00.001-04:00

It was a WARM 80 degrees here in DC today. We visited the park and spent some time in our new yard.

As some of you know, we often call Madeline "M". The nickname "Maddie" just hasn't ever really stuck with us. Maybe as Madeline gets older she may prefer "Maddie" but, as of now we like it very simple- "M" or "Em."When I came across this shirt- I was more than excited. (Click here to get your own custom made shirts- like this one!) This is my little M....loving her time outdoors. If she could LIVE outside she would....

***PS: Our shipment of Cayston arrives tomorrow via the Fed Ex guy. I will be updating our journey once we begin this medication tomorrow. More updates coming soon....

Extreme Home Makeover: CF

2011-04-01T17:08:00.001-04:00

So, a family needs YOUR help. The Blanchard Family has applied to Extreme Makeover Home Edition Maine. They are a very deserving family who has a child with Cystic Fibrosis. In order to help them just click the link here, then hit the button that says "reply to topic". Write your personal message in support of the Blanchard Family and your vote is cast!

You can also see the video they submitted for Extreme Home Makeover ....

Thanks in advance for helping out another CF family in NEED!

Results.

2011-03-30T14:37:00.003-04:00

I had to decide this morning if I wanted to wait it out for the clinic to call me with results or did I just want to call and ask for them directly?

It was a hard decision.

But it seemed worthwhile to calm my headache and try to find out the results sooner than later...

All along I have been thinking it would be a really nice if Pseudo gave us just a little break this time. After two rounds of TOBI and Cipro....we were all hoping for the best and expecting the worst.

My husband and I had our bets. The chance that the Pseudo was still there = 75%. The chance that it was gone= 25%. Those numbers show exactly how we were expecting the worst. Of course, we were hoping for the best....

But, the best is not the kind of phone call we got.

The nurse called to let us know that Madeline is still culturing ~~the nasty beast~~
pseudo. I had a hard time hearing this news, keeping in the tears, and just plain holding myself together.
But somehow, I did.

After a long talk with the nurse she explained that trying a 28 day supply of Cayston, another inhaled antibiotic that works very similar to TOBI was what the "Hopkins CF Team" thought would be best. (Check out Margaux's blog by clicking here to learn about Cayston. She does a fabulous job describing Cayston. We are both on a similiar journey...due to this nasty beast!)
Cayston was developed about a year ago and is a brand new antibiotic that works to treat Pseudo. It has not been tested for safety in children under the age of 6. But with any of these medications, you take your chances. As a mother of a CF child, I have to weighMadeline's risks. She has Pseudo in her lungs that could potentially be damaging her lung tissue....I would rather try a medication that can treat that then worry about it's effects.

We are hoping that Cayston may be the medication for Madeline. Some people do not respond well to TOBI and this may be Madeline's case. We will complete the 28 day supply, wait 2 weeks, return to clinic for another culture. We are starting to feel the "STABBING" nature of this war with pseudo. This is becoming too much of a routine...

Pseudo and routine should never be associated with each other. The reality is that we must get rid of Pseudo sooner than later. Once we have expired all of our options, we will be admitting Madeline for IV antibiotics for a 2 week period. We hope that other methods work but as of now this is our plan.

Today, our family is regrouping our thoughts, taking a deep breath, and hoping for a better day tomorrow.
We feel a little defeated but ,we know our fight isn't over.

Tomorrow we will start all over again in fighting this terrible beast. We will put our emotions aside and jump in yet again because the fight isn't over until Pseudo is gone or a cure is found.

Please consider donating to the CF Foundation this month in Madeline's name. We need YOU.

Click here to donate.

Unexpected.

2011-03-26T19:33:00.001-04:00

CF sometimes makes you feel like you are running around in the dark and feeling your way through to make it to the destination. You think you know where you are heading but, there can be surprises along the way.

As a mother of a child with CF, I am always waiting for these "horrible" surprises. Just when you think that your child is doing well, some part of their CF takes a turn from the worse. It's like a slap in the face. These moments are so unpredictable. I find myself imagining the worse, and hoping for better. We all hate to think like this, but truth be told- it is the reality of this disease.

Madeline's clinic when better than expected- actually, a LOT better than expected.

Jack could hardly eat breakfast this morning. I know that he is usually one that holds up the fort when I am breaking into a million pieces due to the ups and down of CF. But after I offered to make him breakfast this morning, he glanced up to say, "I am not even hungry...this clinic visit has got me more scared than usual." Yes, this is the guy that is usually calming my irrational thoughts, telling me everything is going to be okay, and saying"no, Madeline is not sick." So, of course I was a little lost for words when I discovered that he too...was worried. Where does that put my irrational feelings now? Could they be real?

All these horrible emotions came from the scale last night. It read: "your child has lost 1/2 a pound". Yes, we did the calculations. We weighed her on 3 different scales in the house. Bottom line- she had L-O-S-T weight. We knew earlier in the week that she had hardly gained half a pound in 5 days but then after weighing her last night...she had lost it all. How could that be???

We questioned ourselves, doubted the scales, and went to bed thinking that our math was wrong. It was hard to choke down that Madeline had LOST weight after two months of eating some of the highest fat foods. What did this mean?

We had already discussed what Madeline needed to at least have an "approval nod" from the staff at clinic.
As Madeline sat on the scale, the two of us froze for what felt like hours, staring as the scale worked to find her weight. The numbers flickered across the screen and somehow "magically" the number required for the "approval nod" arrived. It was just one of those times that CF surprises you- except in a good way (which is very seldom). Jack turned in that instant and we both grinned ear to ear. We had won the jackpot. We beat the scale. Madeline had gained.

Watching a DVD with Daddy while waiting for the doctor

The numbers worked themselves out and Madeline made it to the 83rd percentile. After a throat culture, we were heading out the door with stickers and a lollipop. The only thing hanging over our head was Pseudo.

Pseudo.

That ugly beast.

We were told about a "plan" for Madeline. If she her culture came back with pseudo next week, then we would most likely treat it with a third round of inhaled TOBI and hope that it goes away after this round.

BUT.... if Madeline starts coughing we would most likely have to treat pseudo with 2 weeks of IV antibiotics.

So, there it is folks- a plan. I am not sure I like any of those plans. I am hopeful for a clear culture result and never having to deal with "a plan."

Keep your fingers crossed for us...

Wordless Wednesday

2011-03-23T17:22:00.000-04:00

Not sure how ANYONE could sleep through this vibrating thing?!
Just glad she can!

Weight- The Ugly Word

2011-03-22T13:25:00.001-04:00

It's been about a month since we first moved in to our new house. Although we aren't completely unpacked and settled, it seems like we are starting to feel this way. It's been a great stress reliever to have a place for Madeline to run outside, many places to store all of her meds without having to pull out boxes under boxes to find the right one. Life in the new house is just more comfortable for everyone and that has made battling CF daily a lot easier....

The time is coming when we trudge back to Hopkins and again get a throat culture for Madeline to see if this nasty bug (Pseudo) is still taking up havoc in her lungs. This will be the 3rd go around and you know what they say about the "3rd time being a charm." I am hopeful that this time the culture will show very very little growth or none at all. Each visit has shown that pseudo has weakened more and more.

We are all a little apprehensive about this visit since weight is always a big concern with CF patients. Madeline has maintained weight in the 80th-90th percentile for over a year now but of course her weight gain has not always been as significant each time. Last visit she gained over a pound and a half in 6 weeks. The time before that she barely gained a fourth of a pound. They are more concerned with her visit to visit gain which makes each visit a test.

Notice that fat hanging over?! Plenty chubby to me!
Yes, she wears her sunglasses everywhere now!

So, the dreaded scale yesterday showed the results that I didn"t want to see- she hasn't gained much at all.
Of course this is a concern, since she is continuing to culture Pseudo which could be developing more of an infection in her body thus preventing her from gaining weight well. This too, was what determined her last hospital stay at 2 months- "failure to thrive" or AKA poor weight gain. This threat always looms over our heads...

So these past few days we have been stuffing in the extra cheese, melting more butter, making quick trip through the famous drive thrus in hopes that we can cram in those few extra calories for a better result on the dreaded scale. As most cf parents know, the scale numbers dictate the results of your clinic appointment. This is what the nurses have you do first when you arrive- weigh your child. The doctor comes in and presents the "numbers" to you (which you have already calculated what you "need" to get their approval nod). They discuss why your child only gained .6 instead of 1.7! Your parent report card is seen in front of your eyes and although this stupid number talk seems ridiculous down to the last tenth of the number, it is Cystic Fibrosis's reality. Poor weight gain is linked directly to increased risk of lung infections....

Yes, the scale drives most of the appointment. Once your child is weighed you just pretty much know how the appointment is going to go ....(if it is a check-up) You pretty much get a feel for if you will be declared "Parent of year" or be asked, "What have you been doing to supplement her calories? " You may even be asked to give the doctor a run through of each meal and what is served. You are in the hot seat.

It seems appropriate to explain that it isn't so much any specific clinic's fault. We have been at other clinic's with Madeline for CF. Unfortunately, this is just part of the ugliness of Cystic Fibrosis. Weight is so important and does drive your appointment.

The pressures of this disease make it very stressful at times. Weight is one of those big ones.

We are all trudging along, ready to zoom past Friday. We are hoping for the best but just not sure what that is right now. No pseudo and good weight gain would be perfect...

Keep your fingers crossed for us- Friday here we come....

Late Semi-Wordless Wednesday

2011-03-17T10:07:00.001-04:00

Last week, I realized that Madeline is officially into her 2nd year...and it is surely showing. I was making dinner when I looked around the corner and noticed that the flowers that Jack gave me were no longer on the table and instead this is where they were.....

she then realized the she was "caught"...

but that didn't stop her....

                                                  I had mostly petals left.....:(

               (Jack and I had to duck behind a wall to laugh before telling her no.)

New Plate

2011-03-11T14:27:00.002-05:00

I am hopeful that this will help create more awareness for Cystic Fibrosis in
the community. It seems that a lot of people in Virginia have vanity plates
and I am find myself trying to "decode them."
I can only hope people think about what "CF" stands for.

Looking good on my car in our new garage!

"Cure Cf" or "Kure CF" was taken :(
This was the best I could do!

If one person discovers what "CF" stands for than I have made an impact. This is what I can hope for!

Have a great weekend everyone.

Goodbye TOBI?

2011-03-08T10:47:00.001-05:00

I am starting to feel the reprieve of less treatments. It's as if I can almost smell it. This morning marks the last TOBI treatment for this 2nd cycle to treat Pseudo. I feel as though there is some relief in not adding an extra treatment to the already 4 we do daily. Just taking away one inhaled drug gives us all time to live life a little better.

I want to stand up and shout ," I am done with you TOBI!" but the reality is we don't know that we are done with TOBI quite yet. Usually children get sick and the doctor gives them a medicine to treat that sickness. Most of the time the child gets better from one round of medication and the child is feeling back to his/herself.

TOBI using the Trio device

As far as Pseudo goes and CF...it just doesn't usually work like this. We have been battling Pseudo for two months straight with one month off in between. (We give that TOBI a break between months in hopes that one, I don't loose my sanity and two, that Madeline's lungs don't become resistant against the TOBI since it is used so frequently during a CFer's life. ) We hope that one day one round of medication will be a SURE fix for this nasty Pseudo bug, until then...we wait and wonder.

Madeline goes back on March 25th for another culture to see if Pseudo is still hanging out in her lungs. Meanwhile, I am holding my breath that this IS the end of TOBI for Madeline for awhile. I am hoping that this short lived feeling of being done with TOBI will seem very clear when we get that call days after her culture saying." Her culture is negative. She is growing normal flora." Those are the words that I wait desperately to hear. Those are the words that make us all feel like we beat it. THAT is when I will be celebrating the true end of TOBI (at least for a little while...).

Our fingers are crossed that Madeline's current cold does not add extra side effects to her respiratory system. As always, thanks to all of you that are continuing thinking of us and holding us close in your heart.

Bike Ride

2011-02-28T10:37:00.000-05:00

It's been a crazy (but good) busy two weeks of getting settled in our new house. My blogging has slowed a little and will pick back up in a few weeks after we are even more settled. We did however, walk around the neighborhood yesterday while Madeline took her first shot at riding her new tricycle she got for her birthday. DC had temperatures in the mid 60's on Sunday which was a great break.

She really got the hang of it as we walked, met some neighbors ,and enjoyed the luxuries of having a neighborhood to walk around in again. It felt great all around.

Here is my little super star....

How do these pedals work?

I got it!

2nd Birthday in Boxes!

2011-02-22T00:08:00.000-05:00

It's been a busy but, good few days.

So we had a great "moving in our new house" weekend along with celebrating Madeline's 2nd birthday. My parents were able to come up for the weekend and help the unpacking go a lot faster. I am very grateful for all their help. We are still unfolding boxes but the house is looking more and more "lived in!"

The movers came on Friday and moved all of our things to our new house. On Saturday we sifted through boxes while trying to celebrate Madeline's 2nd birthday. It wasn't a very big celebration but, Madeline didn't know the difference. We celebrated the move and her birthday all in one night.

Here are some of the few photos we were able to take in between unpacking the house.

Checking out the cake!

Madeline meets her "be-be" (baby).

My mom made this incredible cake!

Stickers everywhere!

Happy 2nd Birthday Madeline: Look how much you have grown!

2011-02-19T09:37:00.000-05:00

Two years ago Madeline Ann Long came into our world. From her birth til she was 2 months she never left
the hospital. She came into this world a fighter having emergency bowel obstruction surgery at only a few days old and a LONG NICU stay. She battled an early Staph (lung) infection in the hospital in her lungs at 2 months followed by the Roto Virus.

She fought through the first few month of her life, and gained so much strength. She started in the 3rd percentile at only 6lbs, 10 ounces and in the last few years has slowly created a steady climb up the growth chart.

Today we celebrate all the obstacles she has overcome, all the strength and courage she has shown, and all
the love we feel for our little girl. She is and always will be our little fighter. We are so proud of her!

Look at Madeline grow...

Before Madeline...

all cleaned up in Daddy's arms

3 of us together for a few hours, then Daddy was deployed

NICU for intestinal blockage and later STAPH infection....
Came home at 2.5 months to see the outside world for the first time.

3rd percentile, 21 inches tall

Sooo tiny

3 months, 10th percentile
22.5 inches

5 months, 25th percentile
24 inches

6 months, 50th percentile
25.5 inches

9 months, 75th percentile
28 inches
Look at my fat rolls?!

12 months, 80th percentile
29.5 inches tall

19 months, 86th percentile
33.5 inches tall

23 months, 82nd percentile
35 inches tall

Happy 2nd Birthday Madeline!

Good Shower Head For Cleaning....

2011-02-16T14:54:00.000-05:00

We ordered 4 new shower heads a few weeks ago that I was skeptical about.
They are made by Ondine and are 4 inches in diameter. They have an all brass construction and a removable face that allows you to clean the shower head better. All these features were HUGE since we were trying to find a metal one that would attract less Pseudo over time. (It's been shown that metal shower heads hold less of the bacteria because they have a harder time adhering to the metal.)

The actual individual water nozzles are made of brass too which is a great thing. We looked everywhere to find some that were not made of the usual rubber. I am very excited to try out these new shower heads to see how they feel in the shower, and test out their easy cleaning ability.

If you need affordable shower heads that are all metal you can check out this site.

Tomorrow is THE day....

2011-02-13T23:15:00.001-05:00

It's hard to believe that tomorrow is going to happen. Jack and I have been waiting for this day for so long. We are settling on our new house- the house we built from the ground up! We have been through a lot of transitions and changes in the last year, all to make our family life that much better.

Our "lot"

In January of 2010, Jack left the US Navy ( submarine force ) after 12 years. We put our 1st house on the market and relocated to the suburbs of DC after Jack was offered his first civilian job working as a defense contractor.

1st house (2006-2010)

We moved into a 2 bedroom townhouse and hoped to only rent for 6 months. Our 1st house sold after 10 long months . In September we decided to start building our "dream house" for our family. It;s been over a year renting...

townhouse rental

Tomorrow we sign the papers to claim our house. There is more excitement in all of us for so many reasons.

foundation for our new house

framing

Our lives are richer now that Jack is out of the navy and he is able to spend time with his family. We have been "unsettled" living in boxes in our 2 bedroom townhouse and are ready to feel the comforts again of a house.

Let's hope for a speedy settlement ....lots of pics to come of the finished product...

Moving day is Friday!!!