Okay, so initially the Blooming Rose Foundation was created to send out packets to families with a new diagnosis in Montana. It quickly became the surrounding states, then the west coast, midwest and east coast. We are now across the nation and Canada and we are even offering support and packets as far out as Sweden, Portugal, UK, Ireland, Australia, Germany, South Africa and the Ukraine. So, my vision has had to adapt and adapt quite quickly. I want to keep my vision of making sure that anyone that has a new diagnosis is not alone. This applies to absolutely ANYONE. We want to be able to support parents in all countries. The information is often very similar or it takes a couple hours of searching and contacting folks to find programs and support systems in the area, but it is not difficult. It also gives me great thanks for our medical care and services her through the Pharma companies. Albeit, I still think Sweden is at the top….I give the US a close second! So, that is our primary service. In addition we want to help by sending baskets to CFers in the hospital. While this is more of a long term goal, I hope to be able to do it from time to time while we wait for sponsorship, ect. We also hope to work on a couple of projects that help to get the word out about CF to those not familiar with it as well as educate those that thrive with CF about the latest social and support networks, assistance programs and lastly we hope to bring a swedish team over  here for a CE conference regarding their practices, how they differ and why their approach is so different from ours as well as their outcomes.

So, that brings me to funding. While we do not have any secured funding at this point, we do have a couple of great fundraisers coming up and hope to find a wonderful, wealthy, good-hearted individual to take on our operational and salary costs. Not that I mind working for free…..

Once we have our operational cost covered our fundraising efforts will go directly to packets, baskets and CE conferences. We also hope to hold a conference at some point for parents and families to learn more about the social, emotional and mental aspects of living and loving in a CF world. All based on the idea of learning to frame your thinking and vision around what you want for your child and what you see for their bright future. This would not be a conference like CFRI or CFF, it would not discuss research at all, the primary purpose would be to have parents in an environment where they can meet, talk and become empowered by positivity.

All other proceeds above our projects will be donated to the CFRI, Inc. CFRI is a wonderful non profit that focuses not only on research, but supporting the families of those thriving with CF. They have given so many wonderful advances in CF research to all our loved ones, but also have an amazing support system for new and veteran families and CFers. We hope to donate a lot to them!!

Moving on……

I want to say that I feel blessed to be a part of this community. CF brought us all together, but I feel like we are now so much more than that and I am so grateful to all of you that I correspond with or who comment on the BRF page. On Monday, there was a virtual meeting between a couple of us non profits that have some similar visions for CF. First of all, I want to say that I still feel in awe that I get to be a part of anything with these folks as they all seem “famous” to me! But, I am so grateful to have their expertise, their support and their friendships. With that in mind, I want to also say that the list of non profits and organizations involved in the CF world that I would hope to someday collaborate with is so incredibly long, but the five of us seem to stay in touch and involved in each other’s projects or hopes for future missions.

(In alphabetical order)

Sarah from Breathe for Tomorrow, who was there in spirit….but we had a good pow-wow the week before!  What an amazing spirit and an incredible mentor for parents and CFers of all ages. I am amazed by all that she has accomplished for families since the launch of her nonprofit.  She has a way of being realistic, positive, hilarious and unbelievably good hearted all in one moment. So, huge thanks for all she does for the CF world.
Ronnie and Amanda (some know her as Mandi) Cystic Life and RunSickBoyRun. Rhondi….what can I say that you all don’t already know. They have an amazing following for a number of reasons, most obviously their unending dedication to the CF community. I am constantly amazed that they actually have time to sleep, eat, or anything else. They pour their heart and soul into these two incredible projects. I am so grateful for Ronnie’s dedication to lifting people up and keeping them up and all the research and honest answers on the life of a 30 year old CFer. Mandi, what a gift she is. The amazing spirit and confidence that I strive for in this life. In addition she is the poster child for the phrase “heart of gold.” I have never known anyone else in the NP world that wants to help with other NPs projects as much as her. She is such a gift to this community and to me. Thank you for pumping me up before soliciting for money!

Emily from Rock CF oh girl, what is there to say. She has an energy and love for this life that is so contagious. Em is one that always supports anyones ideas (no matter how crazy) and then actually ends up convincing us that they are going to be incredible. What an amazing person, the support from her is unending. I am so grateful for her laugh and smile, it has a way of letting people know that life with CF is good, without saying a word. Em, you ROCK!

And last but certainly not least, Josh our fearless leader from Welcome to Joshland. Joshman, is are the most honest (brutally at times) person I think I have ever met. He knows himself and what  he hopes to see in the evolution of this CF community of ours and thinks constantly how he can help make the new generation of CFers a positive one. He gives so much to the new parents and adults, which is amazing but it is the heart that he has that allows him to speak to the littlest ones that are learning what lies ahead in this journey. You give them hope, laughter and smiles when they are doing their treatments or  their visits in the “hole.” So, thank you for your humility and your vision. Your sister is so very proud of what you have done with this life, for that I am certain.

Wishing you peace from Montana~

(aside from my family of course!!)

Time to celebrate love and friendship! So many people to thank! So many reasons to be grateful to the amazing people that have touched my life,  thanks to Maylie being blessed with CF! 

1) All the people who have donated big and small to our foundation. Especially Zach my amazing webguy, without whom all of this would not have been possible. For as we all know, living with CF you begin developing virtual friendships and networks REAL quick! Zach is incredible and has helped me without question every time I ask. Thank you Zach!

www.kingofalltrades.net

2) Two CFers that have been crucial in my life for “finding my peace” with the diagnosis…at least for a couple of minutes after each phone call.
-Josh Mogren- www.welcometojoshland.com

-Ronnie Sharpe- www.runsickboyrun.com /www.cysticlife.org

3)For an organization who takes pride in research, collaboration, education AND support…CFRI!

www.cfri.org

4)  For all the amazing CF organizations out there that see fighting CF as a team sport and want to win this war together!!

www.welcometojoshland.com

www.letsrockcf.org

www.breathinisbelievin.org

http://breathe4tomorrow.org/

www.cysticlife.org

http://lovetobreathe.blogspot.com/

I know there are so many more……….

5) And…….the very exciting 1st annual (can you say that, if it is the first?) Woodlands Bluegrass Festival!!!
We are so honored to have a couple of great bands….

LITTLE JANE AND THE PISTOL WHIPS 

Here is an awesome video clip…if you have a minute! 

http://vimeo.com/4655164

CLUMSY LOVERS 

Also so incredible!!

And we also have been given a generous discount on a B-E-A-UTIFUL location!!

The Woodlands 

And last but not least the support of a number of amazing breweries around the state!!

Madison River Brewery

Harvest Creek Brewery

Blackfoot River Brewing 

Hopefully a couple more as well!  

ISN”T LIFE GRAND?!

We all know we are on the road less traveled.  Whether we choose to walk, run, skip or trudge is our choice. Learning that every road (even those off Highway CF) have their bumps and detours brings us that much closer to finding our path a little less daunting and a little more unique. 

Breathe. Hope. Bloom. 
 

I have recently met a mother of a little boy who is thriving with CF. She, like me is very concerned about the diet that is recommended for CFers. She recently wrote a book on CF Nutrition, “Cystic Fibrosis Nutrition Done Right.” I am going to attach her manuscript for you to look over. It is very interesting and has great recipes at the end of the book. You can download the manuscript on the left hand side of our page under “Nutrition.” Please let me know if for any reason it does not work! Keep on keepin’ on!

Here is a photo of May and her sister from last weekend sledding!

MAYLIE IN THE INITIAL CF APPOINTMENT ROOM

ANOTHER ONE……

MAYLIE’S HOSPITAL ROOM…..SHE CALLED IT OUR “HOTEL ROOM”

MORE OF HER ROOM

OUR FIRST MEAL OF SWEDISH PANCAKES, RYE CRACKER/CHEESE AND HOMEMADE JELLY. WHO KNEW YOU COULD LOVE HOSPITAL FOOD!?!!

THIS IS THE BOAT FOR THE KIDDOS TO CLIMB ON!

THE FAMILY AREA IN MAY’S WARD

This area is where most of our appointments took place!

MEALS ARE SERVED IN THE DINING ROOM TO ENCOURAGE PATIENTS TO EAT OUTSIDE OF THEIR ROOMS

THE NURSES GAVE MAYLIE A DOLL BEFORE WE LEFT! SO SWEET.

MAYLIE EATING HER FIRST BURGER AFTER BEING DISCHARGED!!
I say that like she was excited….she cried when we left the hospital and asked them to shut the door to her room so that no one else used her room until she came back.

MAY’S FIRST TREATMENT AT THE FLAT.
She looks “drugged,” but, she is just really involved in Polar Express! You can see her little home pump of TOBI to her right.

MAYLIE’S PHYSIO CREATION
Thanks to Sean’s parents and his Uncle Ron and Aunt Jeanette, we were able to buy a variety of new things for May’s treatment. Prior to that, all we really had were the tramp, tunnel and our furniture. I told May she could be in charge of setting up a course….and so she did!

Well, Thursday of our travels brought the dreaded x-ray. I have been dreading the x-ray for months. Maylie had a cough from June of 2007 to January of 2008, which ended with her diagnosis. This cough was a cough that kept us all up at night, usually involved changing of the sheets due to “spitting up” as we liked to call it a number of times per week, vomiting regularly throughout the day (massive amounts of mucus) and a lack of interest in food or really anything because she was so exhausted from all her body had to do to clear everything with out help. Then in March, she got another cough, never as bad…..but enough to make you twinge about 10 times a day. I have heard from many warriors that this is normal, and I do take comfort in that, but I am also stubborn and want to fix everything. So, naturally, I would want to make this better too. So, needless to say that cough was not acted on quickly by her team and she had it until I admitted her into the hospital in October. With this kind of a year, I was expecting to see things that were difficult for me to accept.

However, we got fairly good news…. May’s xray was “abnormal,” with an increase of marking at the hili and bronchial wall thickening, however he said he thought from her previous doctor records that it would have been much worse, instead it was quite similar to other kiddos her age. YEAH!!

Maylie’s doctor went over all her different plans from each individual that we met with and made sure that we felt like it was feasible and then discussed the biggest change for Maylie….the agressive treatment that puts sweds years ahead in CF health. He put Maylie on a treatment dose (not a prophylactic dose) of flukloxacillin which she will take three times a day, everyday until she is six. The sweds have adhered to this with all of their patients for over twenty five years and have found it to be only advantageous, with the possible side effect of a bit looser stool, which of course we don’t want, but is not indicative of malabsorption in this situation. Luckily, we have not seen this side effect at this point. In adult patients they also see some colitis of the liver if on this dose, but, that has never been documented in children. The reason for a treatment dose of fluxloxacillin? It fights off the most common bacteria in CF childhood, Staphylococcus aureus. (Staph is of the greatest concern to the Sweds, while they treat pseudomonas aggressively as well, they have found staph to be a much more tissue aggressive bacteria) Staying on a treatment dose allows children to spend the first six years with minimal colds, allowing their lungs to develop as normally as possible. The one downside of Fluxlox that Anders brought up is that when ever you treat pseudomonas, you open up your lungs for staph and vice versa. So, diligence is of the utmost importance to stay on top of throat and/or sputum cultures to make sure that you don’t have any bacteria growing. Know that May’s doc said that most US doctors would say that this is a bit aggressive, but he has been using it for 25 years with great success and feels that it is of the utmost importance to the “formative” years of the lungs.

The next part of the treatment is going to be shocking for most, I am sure as it is not like the US model for CF treatment that I am aware of. May’s doc said that a “slight” cough is acceptable while accompanying a cold…for 2-3 days. If the cold improves May will continue as usual with Flukloxacillin, if more cough than change from Fluklox to either amoxicillin with clavulanic acid or trimetiprim-sulfametoxazole for 10 days. (I have not researched their availability here in the US, but he assured me they are forms of it are available) After 10 days back to Fluklox, if the cough continues after 10 days prolong antibiotic course to 14 days, if it continues change antibiotics to the other one from TMS to amoxicillin or vice versa. If the cough persists after all of that, look for Pseudomonas, preferably in conjunction with a test for antibodies for Pseudomonas. Then treat accordingly, via IV antibiotics if necessary. But, NO COUGH is accepted in Sweden, there is now waiting it out or doing extra treatments. Extra treatments will be added, but in conjunction with the above plan.

During the summer months some take their kiddos off Fluklox and some leave them on it, personal preference and depending on how their child is doing at that point.

As far as IV treatment, when necessary they give a much stronger dose of TOBI, but it is done only once a day rather than 3x. They believe that the research shows this to be much more beneficial to patients. In conjunction with the TOBI they give a betalactam antibiotic like Ceftazidime, Meropenem or Aztreonam 3xD. So, in Sweden they generally say that kids are on IV’s 2-4 times a year. While that seems like a lot, as we all want to brag about how little our kiddos are in the hospital or on home treatment, it is essential to remember that they react much more quickly than we do and do not accept any cough. They believe that this is what makes their patients so healthy into their late 30’s and 40’s.

Here is a link to an article written by Dr.Margareta Sahlberg (Maylie’s physio therapist) and Dr. Birgitta Strandvik, in the Chest Journal. The research was done on “Muscular Strength and Function in Patients with Cystic Fibrosis.” While they could not compare CF patients who exercise and those who do not, as they were not going to ask anyone not to exercise for 6 months, they decided to compare CFers who exercise with individuals who do not have CF and do not exercise. The findings were incredible! Check it out, it is on the bottom of the third page.

More later……maybe tomorrow! Hopefully I will get my pictures off my phone today and insert those into another post tonight!

Please feel free to email me with any specific questions about MAYLIE’s treatment plan. I am happy to share and I am very open about her treatment plan.

******AGAIN, this is NOT medical advice!!!!!*********
However, if it helps and leads to greater health for you or your child then my job is complete!

Today we had the routine physio, training on IV’s and a “washout.” Washouts are available in Sweden and I believe in the UK. They are a way to do PFT’s on little ones prior them being able to complete a normal PFT. This gives the doctors a bit more of a headstart to treat earlier if needed, when decline is seen. The washout is done by filling the lungs with a gas and then monitoring how many breaths it take to eliminate all the gas from the lungs. In individuals with out any lung “issues.” It takes between 6.5 to 7.5 breaths to expel all the gas. May was at 8. They were very pleased with that and said it shows good function and that she sustained little damage due to her late diagnosis!! Yeah! He said that he expects to see a pretty unalarming x-ray. Fingers crossed. So, the PFT is the easiest test for CFers, you wear and mask and simply breath in and out before and after the gas is administered. Hmmm…….we had to sedate Maylie. Incredible the fight that child has inside her, she is truly a “CF warrior!” (Thanks for that term Tess.) Following her test, we packed up and left for the afternoon….like left the hospital. wow! They asked if we wanted to go to town and hang out with Nama and Elle for five hours until the next dose of antibiotics, um, yeah! So, off we went. It is such a gift to be able to leave the hospital it really makes that “prisoner” feeling obsolete, not that you would have that here.

TUESDAY
Today we met with the dietician we did not discuss the Mediterranean diet as I assumed we would. She gave me a couple pointers for meal time according to the Swedes and CF.
1) Do not make food an issue
2) Do not make food a battle it does not need that attention, it only causes problems to have food wars.
3) Meal time should be three times a day with two snacks in between, no more than five meals/snacks per day.
4) With fewer snacks, meals will be eaten and snacks will be snacked, not the other way around.
5) Meals should be well balanced and full of healthy oil and healthy fat.
6) All the children should get to pick what they want everyone to eat for one day a week. The rest of the days parents pick what EVERYONE will eat.
7) Kids who generally don’t like to eat should help with food preparation. Involvement in the making may spur interest in eating.
She said that their diet really should not be any different than any other child’s (unless they have a g-tube) except that you make smart choices for adding extra fat.
9) Very little sugar and processed foods
10) Her main suggestion for us, ” A child’s seat at the table is not a throne.”
11) Don’t worry if a child does not want to eat breakfast of skips lunch, just plan how you will make up for the calories at the next meal. DO NOT offer to make anything they want as this fixes your problem for the day, but causes a bigger one in the future.
12) Maylie’s doctor also said that if she misses a meal or eats poorly one day, don’t panic….if it persists, there is probably an underlying infection and she needs to be treated to get her appetite back.

We tend to let Maylie eat what she wants when she wants and she said, while it is difficult and good growth is crucial to CF you need to establish good eating habits as you would any other child. So 1.5 hours between eating to establish feeling of hunger and make her wait. Should prove to be interesting…

In Sweden, they use a growth chart. But, they use a different technique if the child is more than a standard deviation for the norm. They take the mother and father’s height and weight and can bring up a number for Maylie as what she should be charted at and she was right on target. So you don’t have to compare your child to the family of 6+ footers (thanks to my Burns side of the family for skewing all the charts!) Or the families that think a sit down meal is using a punch card at McDonalds. I was quite relieved to see a more accurate way of deciding if a child is over/under weight or on target.

May was in the “playland” when I had the appointment with the dietician, so she found us in there and then May’s doctor came in and we chatted for a while about May’s drugs, treatment, ect. Such a great atmosphere, May doesn’t have to listen to everything…..just be a kid! Anders (May’s doctor) and I discussed changing her treatment slightly. She will be taking a few new meds in the morning, he is putting her on the nebulized albuterol as I stated previously as well as saline to “mosturize” her lungs. She will be adding in the Bromhexine as an additional mucolitic and “cough medicine.” (While she does not have a cough currently, it is a preventative). Those are really the only changes of meds.

The physiotherapy has proven to be so wonderful. Such a fun way to do airway clearance. We obviously do not have all the balls, slides, trampoline and such here at the apartment. I asked the therapists what to do for her AC if we are no longer using CPT and we don’t have the equipment here. She said that we have to get creative, play chase, tag, tickle her walk like all the different animals, ect. It is weird to not do CPT, but looking at all their years of work with families and not using CPT for over 25 years and seeing how well they are doing, I believe for us this is a good option. It makes sense that the main purpose of AC, whether it is CPT, the VEST or physio is to loosen mucus and clear the airways and with the exercise, huff coughing, thorax compressions and breathing exercises Maylie is doing well. I believe she will have stronger lungs for this change in her treatment plan. It may not be for everyone and I don’t want to confuse anyone into switching ways of practice that are comfortable, I just agree with the need for physical activity to move mucus, it works best for Maylie and it is a way of life that we want to encourage for her. That being said, she moves mucus much more so this way than with CPT. You can actually see her swallowing throughout the physio time. I took a video everyday of her doing her physio, however…..Elle spilled candle wax on the new Droid phone and while everything is on the SIMM card, I cannot transfer any of the media. So, the videos and pictures will have to wait unfortunately. I will post them once we get home and settled. But, to give you an idea, following her nebs on the exercise ball, I hold the ball against the wall and hold her hands and she bounces for five minutes….which we worked up to. When we first got the trampoline, it was a minute. So, after the bouncing, she huff coughs (as well as about four times during treatment) and then runs out to the gym. In the gym an obstacle course is designed around balance, upper body strength, rolling, jumping, climbing, ect. So, the last obstacle course was a bunch of rings that she had to jump from one to the next (approx. 5) and then jump on the dots, go up the stairs down the slide (head first for the position) and run up to the wall, climb the ladder it is about 8 feet high and 15 feet across, so she goes up one side and “scoots” across and jumps of the other side, bounces on the trampoline, huff coughs, walks across two balance beams and starts over. While she deviates quite a bit, runs, jumps on the mats, the therapist said it is extremely important to keep it fun, if she doesn’t like an activity, ask her to do it one time in order for it to go away, but to not make it a struggle or she will rebel at some point. While it sounds like a lot of equipment, it is really quite feasible. We got a cheap indoor trampoline (which I would like to upgrade at some point!!) an exercise ball, painter’s tape for hopscotch, a balloon to hang from the ceiling to jump for, a used slide from mom a tunnel from my friend and her trike and she is ready to go. So, you have to be creative and have fun!! More tomorrow.

MAYLIE PULLING AROUND HER SWEET THERAPIST, JENNI

A GOOD EXAMPLE OF PHYSIO IN SWEDEN

Monday December 14th

The day started off incredibly well despite sleeping through our alarm and only having 25 minutes to get myself and Maylie ready for the walk to the train. As to be expected I went to the wrong building,forgot to bring many of the items specified in the “don’t forget to bring” email and ended up fifteen minutes late to May’s first physiotherapy appointment with Margareta Sahlberg. Margareta was an incredible woman that taught me more about respiratory therapy, physiotherapy and basic CF in an hour than I have learned over the past couple of months. She had a number of wonderful tips, some may be obvious or commonplace to many of you…but they were not for me, so I will assume it will beneficial for at least someone.

The first technique that she showed me is that nebs should be given in conjunction with bouncing on a exercise ball. Maylie vacillated between bouncing while sitting on my lap and having me sit behind her and hold her hips while she bounced. She loved this, it makes the time more fun and they believe that it encourages bigger breaths…and really good deep breaths when the giggling begins! Another tip from Magareta was that as soon as possible the mask should be put aside! They only use masks until kiddos are about two years old. They use them on occasion when there is nasal congestion, but then only for the first few breaths (10-15) to help moisturize the nasal area. They promote the mouth piece as it gives a much more direct lung treatment, not having to worry that the medication may go in through the nose and then be blown back out through the nose prior to it reaching the lungs. Makes sense. Prior to this Maylie had never used a mouth piece, we had always been really hesitant about it, but she took it like a champ!

Another technique they use is called thorax compressions. I am sure you can imagine what this means, I could do a quick video if anyone wants, but you “intertwine” your fingers between all the ribs (facing towards or away) and then you listen/feel for the exhale and then about every other breath, you compress slightly, (it should feel good, not pain or too much pressure) and then almost vibrate your hands ever so slightly. The whole time lasts only as long as it takes for a long exhale. We did approximately five each time, either following physio or when she stops to “take a break.” However, she said anytime you can hear congestion and want to help loosen it is a good technique.

Maylie was also taught to huff cough, on the first visit. Yet another technique that I thought was a long way off. So interesting how you realize how easy it is to teach, when you know the techniques! They used tubes about the diameter and length of the mouth pieces for the nebs. Then they took May to the mirror and had her “fog” it up and then draw smiley faces in the clouds. She loves it, now she makes “clouds” every time she sees a mirror and she can exhale much longer than I expected and she has us write names in the clouds…it so sweet.

MAYLIE’S FIRST DAY OF HUFF COUGHING

Pulmozyme. Okay, my understanding of all of this was way off. They do use pulm, they just don’t believe it is a wonder drug and feel it should be used in fairly specific populations. Most kids are not on pulm here, unless they have had pretty regular chronic coughs. Anders (May’s doc) will be keeping her on it for the next year or two with hopes to take her off of it once he sees her without a cough for a prolonged period of time. He also said that he does not put patients on it that are older with more severe lung disease, he compared it to taking a bucket of water to a burning house. As far as administering the drug, they give pulmozyme at night. Due to the “work” that Pulm has to do to break down mucus, it is best to give it prior to sleep so that you don’t exhale the drug out of your lungs too quickly, before it is able to work as it is intended to.

One of MY personal favorite things that they do here in the hospital, which is an absolutely novel concept, is a drug called EMLA cream. You put this lovely little patch on your little peanut and then an hour later the skin is completely numb and you cannot feel the IV placement. Sure would have made the last year easier, and may have kept Maylie from becoming quite as nervous around hospitals. It was an incredible experience once she realized that the IV was placed and she didn’t feel it, she started laughing and said, “Mom, we have to get the stuff at our home!” The women that placed the IV were the picture of comfort. They were both grandmothers and were so incredibly understanding that she was terrified and talked with her every step of the way, blew bubbles and then when she was done, she got a little bear and Tinkerbell stickers. Needless to say she was quite happy!

Then Maylie got to play for a bit while I got a quick rundown on what the week would hold. She will be doing physiotherapy twice daily, she will have her PFT’s done (more about that later), meet with a dietician every other day, have an xray and then I will be taught how to do the home IV’s. YIKES! Still not real excited about that.

Her meds have changed slightly while we are here they are as follows:
1) Ventolin (albuterol) nebulized rather than in the inhaler (they feel that is quite ineffective) in the morning
2) Sterile saline or 3% with the ventolin in the morning
3) Pulmozyme once a day at night
4) Bromhexine a pill, given three times a day.
And then of course her antibiotics, PROBIOTICS and a truck load of vitamins!

As far as the children’s hospital, all I can say is it is incredible. You walk in the door and there is a huge wooden boat with ropes with all these levels and kids playing on it, it is very welcoming and not so “hospital-like.” May has a gorgeous room with full length windows looking out at the forest, live plants and traditional contemporary swedish design. Then the ward itself has a play area that is larger than our house, it is full of dolls, trucks, trains, dollhouses, craft tables, couches, esspresso machine and a foosball table. They actually get meals in a dining area, they encourage the rooms mainly for sleeping otherwise…..there is so much to do, we were rarely in the room. So different. It is so nice because May is in the clinic that is all scheduled, so everyone is screened for pathogens and the majority of the patients are oncology and cardiac. May was the only CF patient in the ward, so we were free to move about anywhere, and we could as May was not stuck to an IV tree. That is such a gift. It can make the treatment time a bit more difficult, but it is so nice to not have her connected to a pole for a week straight. Maylie kept saying this is my favorite hotel! I think that is probably a good sign. Then downstairs, there is a game room, a play room (and that does not do it justice) an arts and craft room, a pool room, library (books, cds and dvds) massage room and a parents lounge while the kids play. They also have quite a few kids that are here for extended periods of time, so they have a school as well. If they had internet they would have to throw us out!! Maylie did not take advantage of the play groups or arts and crafts projects as we were so busy, but they looked incredible.

MAYLIE ON THE BOAT

So, all in all…… an exciting week. While this was not super helpful in giving new ideas……more is to come and I am certain that there will be a couple of things to take away for most everyone! Thanks for checking in on our journey!!

MAYLIE’S LAST THUMPERING

If you ever venture over to beautiful Goteborg, it is the best place to stay. You walk out the door to cafes and markets, and shops, (if you enjoy shopping, not my thing maybe if I had someone else’s credit card!) ….lots of beautiful pedestrian streets, just gorgeous!! However, I realize that’s not what anyone is hear to read about.
So, after a 24 hour trip with no sleep and another four hours awake to try to even out my jet lag, I arrived at the hospital. Exhausted, Maylie had fallen asleep on the cab ride to the hotel. She was sound asleep as I dressed her, carried her to the train, road the train (which she was more excited about than the airplane!) and then a four block walk to the hospital. Needless to say, I may have taken a nap in the waiting room. Then, I realized I was in the wrong waiting room. I made my way to the CF clinic, and met Kate, the vision of who you would want your child’s nurse to be. She was an incredible warm woman that was comforting to both myself and Maylie. Then Dr. Lindblad walked in, tall and quiet as I have pictured for the past couple of months. He invited me into their “exam” rooms. Complete with adult table and chairs, flat screen TV, slide, child size table and chairs, couch, kitchen set, dollhouse….sounding like anyone’s office? What followed was a two hour appointment, full of questions about Maylie and her life up to now, her treatment and medications. We spent quite a bit of time talking about diet and medications. Once I have a better understanding of all of this, I will write all I learn. But, for now, I will just say that we will have new options that I feel confident in.
After we finished talking he asked to do three cultures on Maylie. The throat, nose and perineal. (Has anyone else every heard of that?) Needless to say, Maylie was NOT impressed. She was crying so hard, it was horrible!! We all have those moments, but, they suck every time! Following was the part that shocked me. I said, is there anything left and Kate said, “no.” So, I picked up a sad Maylie and headed out the door. Kate stopped me and said, “the trust of my patients is of the utmost concern to me, do you mind staying for a while, so that she can trust me?” Of course, after the shock wore off I said of course and we went to the table where May had her cultures down, she laid her down and just sat next to her and stroked her hair, asked her about her plane ride, her sister and her family and school back home. She has such an amazing sense of what May needed to feel comfortable, I was immediately reassured of our decision. After about twenty minutes, Kate sent Maylie and I on our way, with a stroller for the week. We were out the door headed to the train when Kate came running down and said that Dr. Lindblad needed to talk with me….so, back up the elevator we went. That is when the news came, like a bolt of lightening. Anders had just called to verify insurance and it was denied. So many thoughts, so much confusion. We had come so far for nothing. Unless we could come up with $22000 to do the treatment ourselves we are just here for a vacation. Home we went, exhausted, defeated and depressed in dark, rainy Sweden.
I arrived home, snapped at my poor sweet mother for everything and call Sean, said you need to do whatever you can in the next day and a half to get her coverage back, call your uncle if you need to. Uncle Joe is an incredible attorney out in Portland. And sadly, I went to bed….for a very unrestful night of sleep.

We take off tomorrow morning and I will keep believing that we will find all the answers that we have spent months working on arranging. Think good “insurance” thoughts!! And wishing you all good health in the holiday/cold season.

CHEERS!! From a little Maylie.