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Thursday, December 16, 2010

It's Time for an Update, don't you think?

I find myself less motivated to post as Addison's medical procedures decrease. She's been on Propranolol, a blood pressure medication, since this Fall. She takes it orally three times a day and she takes it like a champ. The only thing we have to becareful of is preventing side effect seizures by making sure she gets at least one ounce of food every six hours, day and night. I won't lie, I do wish I could sleep for a whole night through and I'm sure Addison would agree but soon enough. I Jan we will stop her Propranolol and she'll have a recheck at Children's on Feb. 15th. If we don't see any growth after stopping the med. we may really be done. Her face is pretty symmetrical now. Ryan and I can still see some puffing when we look at her cheek from behind but strangers don't notice anything. Her "strawberry" mark has defiantly lightened from a glossy red to a dull pink and we think it's getting more speckled opposed to solid like it was. Kids do still comment about what this mark is and I've come up with the following answer, "When she was leaving Heaven before she was born the angels kissed her, with lipstick! And they kissed you too but they just weren't wearing any lipstick." It usually quiets them and brings out a smile. At this point we can whole heartedly say we are so, so, so glad we chose to do the Vincrystine and I'm starting to really feel the warmth from the light at the end of the tunnel.

Tuesday, September 21, 2010

Friday, May 14, 2010

Hair & Hats

So after 13 weeks of chemo here is what is left of Addison's hair. She's got a pretty sweet combover that hang out on the left side.
And a nice monk looking hair cut thanks in part to her scrubbing it off when she's falling asleep.
So what do you do with so little hair? Make a mohawk of course!
That along with her PICC scar makes her one tough little girl.
Thankfully our mailbox keeps being stuffed with hats. This one came from Pat and we love, love, love it. Now she's ready for the Kentucky Derby.

We bought this little beanie we accessorize with many different clips to match her outfits.
And look for pictures coming soon of a hat fashion show courtesey of Grandma Jodi and Pop Pop!

Wednesday, May 12, 2010

Band Aid is Off.

On Tuesday we took Addison's baind aid off, the last tether to her PICC.Her skin is still really broke down but it's healing. She'll have a little scar, where Ryan is pointing. But who cares scars make you look tough.
She had her first submersed bath last night and LOVED it.

Tuesday, May 11, 2010

Surprise! It's Over.

Well Monday was a big day for us. I noticed on Sunday that a corner of Addison's dressing was coming up. I called the home health nurses but the one nurse I trust wasn't there so I told them I would just change it myself. After I got to looking at it closer I noticed it was wet underneath and decided just to tape up the one corner and wait until Cheryl was back on Monday. So Monday morning Cheryl came over and changed the dressing. It was very smelly through the dressing, the hole was bigger and there was puss coming out of it. Her skin was really red again also. That morning we had to run to town and when I bent that arm, both on getting her in and out of her seat, she cried. I think it was because the triangle piece that is normally sutured into the arm was shoved clear into the hole where normally only the line goes in the hole. Before Cheryl redressed the site she called Children's and spoke with Renee, our chemo nurse. She said we could go to our local pediatrician and have a specimen taken of the puss and blood work done to see if there was infection in her body. I decided against that. PICC lines in little people are run of the mill at Children's, but here in our town I new they would be doing more guessing than anything. So off Addison and I went to Milwaukee at about 1pm. When we got to Children's Dr. Kelly looked at her arm and said the PICC line was telling us it was time to come out, between the line getting clotted up and her skin breaking down. So Renee pulled her line. Yipee! She placed some gauze over the hole and then gently pulled the line out. Addison just laid there without a peep. I was super excited about having her line out, I feel like I got my baby back. But at the same time it kind of makes me nervous. That PICC has saved us so many times. There was blood work, sedation, and numerous IV's that were given through it and saved Addison a bunch of needle sticks.

Here's what her line looked like. There was some tissue that had started forming near the end.

Addison is really good about her arm being messed with. Even after they were done she just kept her arm still laying out. Renee put on a hot pink band aid.
Addison's chemo nurse Renee and a nurse who helped hold her arm.
Dr. Juern (Anna), standing, and Dr. Drolet. Dr. Drolet said that the plan is to just wait and watch for now. No more medication until we see a significant growth reoccur. And Dr. Drolet does expect it to regrow since we are still in the growth period, until 9months old. At that time they will put her on Propranolol an oral blood pressure medication. Can you believe it, no more chemo and for the time no more medication or Dr. visits! It's been a long journey and we're not done yet but that light at the end of the tunnel is getting brighter.

Anna and Addison.

Friday, May 7, 2010

Woot!!! 13 Rounds Done!

I've been slacking here for a few weeks. There's not much visable change to Bettie since her second MRI on week 7. Today, we had her last MRI, yippee. We had a new anesthesiologist who wanted to use a different sedation than she had the last two MRI's. The tech told me because of the new med I wouldn't be able to hold Addison until she fell asleep. Umm what? I was pretty nervous. During her first MRI not holding her was a nightmare as she fought the drug. But my worries went unfounded when within seconds of the sedation being pushed her eyes grew heavy. She did great through the whole thing. She did start kicking during the end which made us a little uneasy, but she stayed asleep. It took her forever to wake up though and the sedation was shorter acting than the one she had before. That doesn't make sense but whatever. She slept on and off the whole time we were at Children's and the three hours it takes to drive home.
We were at the hospital for a very long day. After the MRI we had our regular appointment in the Hot Clinic. They couldn't get her PICC to return blood which is bad. They always make sure she has blood return to make sure the line is in the appropriate place. If not the Vincristine could eat her tissue causing scarring. So after a bunch of fiddling they put TPA, a clot busting med, in her line and let it sit for thirty minutes and tried again. Yes, success! Renee, our nurse, thinks a clot probably formed at the end of the line. We could flush it because the fluid pushes the clot out and when you draw back the clot "flaps" over the end of the line making it impossible to draw back any blood. So the TPA blew threw the clot and once again made life happy. Little hiccups like this always make me a bit nervous.
Addison's arm looks a lot better today. On Wednesday I had to have the home health care nurse come and change her dressing. She had been picking at it and I thought she was just discovering it. However, on Wed. morning when I went to flush it I noticed one corner was completely loose and her skin underneath was all red. When the nurse changed the dressing it was soaking wet underneath and her skin ripped when it came off. The nurse speculated that her arm was weeping and causing the dampness. And I'm guessing that's why she was picking at it all week. It probably itched like the dickens. Poor little kid. Anyway, today her arm looked fabulous and not weeping. So we are once again on the road to a better place. But all these are signs that it's getting near time to have her line come out.
Dr. Kelly said they would review her MRI on Monday and then call us with a tentative plan of what treatment we are doing next. Her trial was only for 12 weeks and now we need to come up with a plan of action from here on out. Dr. Kelly is thinking we will probably start her on Propranolol, a blood pressure med, which will control the growth. Down side to that is it can interfere with how the body metabolizes blood sugar and can cause seizures. They would hospitalize her for a few days when they first put her on it and check her blood sugars. Additionally, he said if we do go that route they would give us some tips on how to stabilize her blood sugars which include waking her up to feed at night. NOOOOOOO. I just barley got her to sleep through the night again after her RSV hospitalization busted that routine. But, we will do whatever it takes. I am a bit nervous but like I said to Ryan it'll probably be like this whole situation has been. Everything has sounded super scary and complex but as we settle in and it all become a crazy sort of normal it's not so scary and I look back and wonder why I fretted so much. So that's where we may be headed. We will know more on Monday after her team reviews her progress and the MRI.

Sunday, April 18, 2010

Round 10

I can hardly believe that she had her tenth dose on Friday. I actually thought it was her ninth but then I looked at her wall and sure enough there were nine little quilt blocks representing the nine weeks that have gone by. I had to go look at the calendar to make sure it really was the tenth dose. The day we decided to undertake this treatment the tenth dose looked a million miles away and now here we are just two doses away from the end of her trial! After the twelfth dose we will begin to go every other week and if it holds off the growth then we will try and go every three and then just once a month. We will keep spacing treatments out as long as regrowth doesn't occur. Cross your fingers!

This week Addison's arm, under the dressing, looks much better. It's hardly red and it's just a bit dry. They repositioned the dressing to see if they can get part of the skin to heal up in the open air and next week will reposition it again to heal up another part. On Monday and Wednesday the home health care nurse came and put a new dressing on and applied a steroid. The steroid made all the difference in the world.

Friday, April 9, 2010

MRI Results

This is the MRI taken the day Addison had all of her procedures and the first day of her Vincristine dose. The white mass on the left side of her face is the hemangioma (the white part up top is her brain). From this slice you can tell that only about one third showed on the outside and two-thirds of the mass was on the inside. Notice how close to her throat it encroaches. And this little beauty was taken last week, her seventh dose of Vincristine. See the mass, it's super small! From all the MRI slices they are able to compose a 3-D model of the mass and measure its volume. The mass before was 79.3 cc to 47.4cc. That's over 50% decrease! To say the least we are super, super excited. But I think the pictures say it better than any words we could write.
So kiss Bettie goodbye, she's leaving and is not coming back! Our trial still has four more doses of Vincristine and then they'll decide if they want to keep her on weekly doses or try to space them out every other week and see if they can hold off the growth.
Addison's arm where her PICC line is at is a little irritated. It's red, bumpy, and flaky. We think it's a result of an alcohol based cleanser they used while she was admitted for RSV. I really wish I hadn't left to pack my stuff up to go home. I came back into the room right after they had cleaned her arm with it. That was two weeks ago and this last Wed. I noticed her skin was really dry around the dressing. I put Aquaphor on it and the next morning I noticed the Aquaphor had made the dressing pull up. I had the home health care nurses come over and change her dressing and we saw how irritaed her skin was underneath. When they pulled the dressing off today the part that was irritated on Wed had healed and now there is a new area of irritation and they whole area under the dressing is inflammed. They put a topical steroid on her skin and we will put more on it on Mon. when we have the dressing changed again. They say it may take some time but everything should heal up fine. These kids' skin is so sensative that Renee (our Chemo nurse who takes care of all the hemangioma kids on Vincristine) has developed a specific way to dress their PICC lines so that their skin doesn't break down. Her method doesn't follow protocol so everytime someone else does it they want to put cleansers and antibacterial agents on and it's these products that break their skin down. So if the parents aren't there everytime the dressing is messed with, when someone besides Renee changes it, and watching like a hawk it is almost asured that it will be done wrong. This is why we love Renee, she's found ways to protect the kids' skin so they don't have to deal with infections etc. They have enough to deal with already. Addison's arm will heal up, it'll just take awhile. Till next week!

Saturday, April 3, 2010

Round 7 and Catching Up

This was our world for four days. Well it's been awhile and we have a few very good excuses. Three weeks ago, on a Monday, Addison came down with a cold. That Friday we went down to Children's for her normal chemo appointment. Dr. Kelly saw her and said if she kept not eating, she couldn't breath through her nose so she pretty much stopped eating, or her cough got worse, which at the time was very minimal, we were to call the Hot unit. Before we drove home they gave her an IV to help her along and swabbed her nose to make sure her "cold" wasn't RSV. That night, back at home, sure enough the little bugger didn't eat again. The next morning the same thing so I called into the hot unit and they told me to take her to the ER to get some more IV fluids. We had a wonderful nurse there who treated her great and after a couple of hours we were back at home. They also set up for a home health care nurse to come to the house Sat and Sun to set up an IV we were to hook her up to each night for the two days.

Since her cold started I had been keeping a vaporizer and humidifier on in her room while she slept. We were also suctioning out her nose with this awesome automatic nose sucker one of our chemo nurses turned us onto. All week she had been coughing so hard she would gag and then puke but starting Friday night it really started to ramp up. At one point she coughed for two hours straight and of course ended with puking. The poor little thing's eyes would roll back in her head she was so wore out from all the coughing and just couldn't stop. I took her into a steamy bathroom so many times on Sunday that I was afraid I would run the hot water heat out. The steam helped after about 20min. All weekend I kept calling the hot unit giving them her symptoms and asking if there was anything else I could do. It was very frustrating. I kept asking for help and no one would give me any assistance. It just didn't seem like an average cold to my Mommy instincts. Finally, on Sunday night at 10pm I decided to take her into the ER. They immediately brought in the Dr. which I knew wasn't a good sign. They put her on oxygen, her levels were super low, they said her lips were starting to turn blue and she was really struggling to breath, suctioned her lungs for the first time and took some labs. They ran another chest e-ray which showed she had drastically worsened just overnight. On Saturday her chest x-ray had been clear and now she had pneumonia. Thankfully our ER Dr. was smart enough to counsel with Children's Hospital to see what they wanted to do. I was given the option to have her admitted to the hospital in Green Bay or Children's. There wasn't an option in mymind and I said she was going to Children's. So at 2am the ambulance arrived from Milwaukee and we made
Getting better. At first all she did was sleep.

our way down to Children's. Ryan was underway in Duluth, MN so I drove behind the ambulance. The EMT's said they weren't going to go all lights and sirens but let me tell ya, I was going 80mph and couldn't keep up with them. Maybe they didn't use all the bells and whistles but they sure didn't go the speed limit either. By the time I arrived at the hospital they had already unloaded her and the Dr's had done their evaluation.

This little Monkey got very, very good at watching her toons. They had a ton of kid channels and Addison soaked them up. She especially liked the Baby Einstein movies they had.

Addison stayed a total of four days and it wasn't a fun experience for any of us. Every day, multiple times, they shoved a thin catheter down her nose and into her lungs where they suctioned out mucus. RSV is known for it's plethora of mucus that's sticky and stringy. She also ended up on multiple saline breathing treatments to help break everything up in her lungs. After four day and way too many suctions they discharged
Yeah, the oxygen came off! Nurse Sue came up with these ingenious little pads to put on her cheeks. That way as they were pulling the oxygen on and off trying to get her to breath on her own the tape wouldn't irritate her face.

her. The next day we were in the ER because her PICC line wouldn't flush. They put an anti-clotting agent in her line and let it set for an hour. They then pushed everything through and voila the line cleared. At one point I was very scared that we were going to end up back a Children's having her line pulled and replaced. But luckily Heavenly Father knew I couldn't handle anymore situations for the week. During a total of seven days we were either in the ER, had a home health care nurse at the house, or where in the hospital. Yikes, thank goodness that week is over!

On a good note, as you can see Bettie shrank significantly while we were in the hospital. I joke that it must have just been full of snot and they sucked it all out. All that is left is a lump under her chin and behind her ear. Most people now just think she has chubby cheeks.
Things always get better when our Dad comes home.

The whole week was super stressful but going through it made me very grateful for many things.

I am grateful for such a wonderful captain on Ryan's boat, they let him off every Friday when they are in port so he can go with us to Milwaukee for Chemo and they don't even charge him leave. They also let him come home not only when I was having gallbladder attacks and subsequent surgery but this time also when Addison was hospitalized.

I am grateful for medical professionals who have dedicated their lives to learning and not only treat Addison but care for her as well.
This is Addison's day nurse Sue. She was wonderful and cared for Addison so compassionately, even during procedures which weren't happy to endure.

I am grateful to live in Sturgeon Bay and to be so near a hospital that specializes in hemangiomas (one of the residents said to us that you want to be either in Milwaukee at Children's or San Francisco if you need treatment for a hemangioma as these are the premier treatment centers in the states. Oh, I also overheard that Children's is #3 in the world for Children's hospitals!)

I am grateful for so many friends and family who are thinking and praying for a great outcome for Addison. Your thoughts, prayers, and acts of kindness have touched us deeply and do not go unnoticed. We often reflect and are amazed at the outpouring of love we have received over the last few months.

I am grateful for one tough little girl who amazingly smiles through every situation she is faced with, good and bad. And loves us unconditionally every day.

And I am very, very grateful for a loving Heavenly Father who knows exactly what we can handle and what we need. And for a Savior who while atoning for our sins also felt the agony of our every pain and sorrow. What a blessing and comfort it is to me to know that he, and him alone, is the ONLY person who knows EXACTLY what we are feeling.

So while this weeks was one hell of a week it has made me realize this chemo thing really isn't that bad. And average life, after this is all over, is going to be a piece of cake.

Friday, March 12, 2010

Round 5

Another good visit went down yesterday in Milwaukee. Bettie seems to be getting even softer and drooping. All signs of good progress. I can't wait for two weeks from now, Addison will have her second MRI. We'll actually I'm a little hesitant since last time they strapped her down, before the anesthesia had taken full effect, she was so weak she was trying to cry but all she could do was whimper and as her little body was fighting against being taken under by the anesthesia all we could see was her little feet kicking against going under. It was heartbreaking even though we knew she wasn't in pain. And the anesthesiologist, nurse, and MRI tech did not work well together to say the least. It took about a half an hour of watching this before she finally gave in to the drugs. I heard the nurse at one point say, "Come on Addison!," in not a nice tone and I decided right then to forgo getting lunch and we would stay put right there in the room for the whole scan.
Besides the memory of last time, which this time I am demanding that I keep holding her until she falls asleep and then they can strap her down, I am excited to see the results. From her scans they are able to build a three dimensional model of Bettie and measure Bettie's volume. And then the next week we will be able to compare the volume of the first scan to the volume of this second scan. This will be a much more accurate measurement since the measurements taken with a tape measure each week are prone to human error. I can't wait to hear the official measurements!
Just when I get all excited about how things are progressing it seems that some stranger is always quick to remind me that we still have a ways to go. Like yesterday, we were waiting for our car to be pulled around at the hospital when a little boy across from us in the waiting area, probably 11 or 12, says, "Boy...she sure does have some big cheeks." And although I know he meant no harm and he followed it up by continuing to stare at her in admiration and amusement and saying, "She sure is cute." I still could not help but feel a little sting. But the stinging is getting a lot better than the first few weeks. Instead of feeling like drop kicking the kid on the spot, or just saying. "It's a tumor." And hoping he'd feel awful for asking I instead said,"It's a tumor. That's why we come here." Simple, truthful, and honest. And I was able to say it with a smile. My sadness of wishing Addison had a "normal" infancy is quickly being replaced with an on fire desire to educate people around us about hemangiomas. Educate them with the hopes that they will pass on the info. or themselves benefit from knowing that there are treatment options...you don't just have to wait.
And on a happy note. We are quickly teaching all the staff at CHW what a tunic versus a dress is. Addison's outfits are always a topic of conversation and I will confess right here that I contemplate each week what outfit she will wear on treatment day and always dress her to the nines. The last two weeks she has worn tunic with leggings. Each week people comment on her darling dress which last week Ryan was quick to inform the nurse that it was a tunic not a dress as he had learned earlier that morning. So this week that same nurse came in and brought up what a cute tunic she was wearing this week, she's a quick study. From there it went on and on with various members of the staff until our research fellow, Anna, challenged Dr. Drolet to name what Addison was wearing. She was quickly reprimanded for thinking it was dress. It's fun conversations and such a friendly environment like this that make us so thankful that Addison in being treated at CHW. We keep remarking, "Everyone is SO nice."
Addison is also a star when it comes to receiving her treatment and getting her dressing changes. Most appointments she falls asleep at least a couple of times during the appointment. This week was no different, she fell asleep right on the table during her dressing change. Everyone comments on how calm she is and how she's so easy, she doesn't squirm or whip her arm around like a lot of the kids. Of course we can' t help but smile at a compliment like that.

Saturday, March 6, 2010

Round 4

Well another week has come and gone and once again we made it down and back to Milwaukee. Addison's treatments are going really well. Dr. Drolet was gone and she's the one who normally does the measurements so the one's we received this time aren't all that exact. Dr. Kelly's measurements showed another 1 cm decrease, and Dr. Juern (research fellow) showed the same measurements as last week. The variation in measurements is due to everyone going by different landmarks on her face. That's why they like to have the same person take the measurements week after week. So next week we'll get some substantial feedback on reduction when Dr. Drolet is back in town. Dr. Kelly did say he was very happy with the progress she is making. He feels like Bettie is even squishier this week, like a "bag of worms." We took that as good news.

(Looking at the pictures I can tell she doesn't like when we tilt her head back to get a picture. Every time we do she squawks and the pictures show it. )

I am a little disappointed as it seems like everyone else can tell a difference in Bettie but I can't. I do see a little improvement and I am getting more glimpses of her neck which before was covered by Bettie. But overall I don't see it going down as drastically as other people say it is. I chalk it up to seeing her everyday where others see her once a week or so. I hope soon to see the big change.

Tuesday, March 2, 2010

Round 3

We got great news this week when we went to Children's... Bettie is shrinking. The official measurement was 1cm. Yippee, we've gone from 64 sq cm to 49. The Dr.'s both asked if we could see the improvement. We thought we could but then again we didn't know if it was just wishful thinking. Our dermatologist said she knew it had decreased just by looking at her across the room. What a great day! This weeks progress pictures. There was a lot of drainage from her PICC insertion but the nurse confirmed what we had thought. It was probably from her moving her arm around so much. After all, this week she discovered her arms and that they are good at batting objects.

Monday, February 22, 2010


These last two weeks I have been constantly amazed by the outpouring of concern and love for Addison. I am astounded by the many comments and genuine concern that we have received from people who have never met Addison. It is reassuring to know that many, many prayers are being said on her behalf and that so many loving people are keeping her in their thoughts.
I have been pretty good about being strong, well except on her procedure day but isn't that a given, through all of the appointments and discussions. But then when people show so much concern and love for Addison I just can' t suck it up anymore. Today was one of those break down days. I went to the post office and found a package from my childhood friend Gena's mom Pat. Inside the package I found two tiny "wee blocks" quilt blocks Pat had made, she's a fabulous quilter, and such a kind touching note.

"...here is my long distance plan to let you know our prayers and positive thoughts are with you. Each week you will receive a "wee" block in the mail to bring cheer and smiles. At the end of 18 weeks of successful chemo there will be 18 "wee" blocks hanging on the wall...mail them back to me and I will "build" a celebration quilt for Addison not to remember the bad days but all the love and good days."

So there I was standing in the Post Office crying. Needless to say I whipped on my sunglasses when a guy came next to me to sort through his mail. Thank you Pat for brightening my day a little more. We can't wait to see the next "wee" block.
I just want to say thank you to the many, many individuals who have expressed concern and love for Addison and our family. It helps us feel like we are not going through this alone.
Thank you.

Bettie's Gone Squishy!

We have good, good news today. Not only is Addison acting like her normal smiley self but Bettie has gone soft! Grandma Cec noticed today, while tickling Addison's face, Bettie seemed softer. Sure enough I felt it and it was soft. Before it was very easy to tell where Addison's cheek stoped and Bettie began. It was like there was a golfball under the skin and the border was very defined. Now in front of her ear it is pretty dang squishy. However, behind her ear is still really well defined and not as soft. Maybe next week behind the ear will squish too. Exciting development...keep your fingers crossed for more squishiness!

Sunday, February 21, 2010

Join Team Addison

Blast Bettie 2010
Team Addison
Bettie...who the heck is Bettie? Well you've already met her you just didn't know it. Bettie is Addison's bump (parotid hemangioma) affectionately named by her Aunt Summer. Addison's Grandma Cec says Bettie the Bump is a way better name then Tina the Tumor. I would have to agree. So this is the official announcement of Bettie. Join Team Addison and watch the sidebar pictures and join us in saying good riddance to Bettie as we Blast her away each week.

Saturday, February 20, 2010

2nd Round

We went down Thursday to Milwaukee for Addison's second round of chemo and a hip ultrasound. The ultrasound came out perfect, she had to have it to make sure her hips were okay after being breech. And we got some additonal great news that the tumor has regressed slightly. We can't see this visually but by physically measuring the hemangioma and comparing it to last weeks measurements they can tell it has shrunk. We are very thankful that it has not only stopped growing but has started to go away. We are looking forward to next week as that is generally the time frame in which you start to see visual changes. Her second round of chemo went well and her PICC line looks great. She did get a small skin tear when they took off her dressing so we hope that heals well and next week the dressing will come off a bit smoother.
What a tough little bugger. She was smiling and cooing while the nurses took her blood pressure.

Today, she has been sleeping a lot and is pretty uncomfortable when awake. Last week it took two days to hit her and this week it only took one day. Hopefully this means she will be feeling better a lot faster this week. The Dr. also switched around some of her meds to help with the side effects. He thinks her anti constipation meds were giving her stomach cramps which might have been what make her so uncomfortable last week. He took her off that med completley and told us to use prune juice if she seemed constipated. He also said we didn't need to give her the antibiotic which prevents against pneumonia. The antibiotic tasted terrible and we tried everything to get her to take it last week. He said he's not that worried about her not having it so for now we'll hold off on it. She's been having really bad gas which seems to hurt her so he said we should give her Mylicon drops a couple of times a day to relieve this. Additionally we felt her oxycodone given for pain was making her wired so Dr. Kelly discontinued that and said to give her children's Tylenol for the pain and gave us a Rx for morphine if the Tylenol doesn't work. We have to be really careful with the Tylenol though because it masks fever. And a fever is a sign that her PICC line is infected. So we'll use it with caution. We'll see how it goes this week. Her current Meds:
Zantac twice a day to decrease the acid reflux
Tylenol as needed for pain, Morphine if Tylenol doesn't work
Prune juice as needed for constipation

Outside of Children's Hospital in Milwaukee. It's cold here!

I've been continueing to do research on hemangiomas and Vincristine (chemo med) and I am very happy with the results. Every research paper, study, etc. I have read I always look to see where it was done and who conducted it. The majority of the time (here in the US) Dr. Drolet and Dr. Kelly, Addison's Dr's, names appear. It just reconfirms in my mind that this is the reason we were sent to Sturgeon Bay, for Addison to be able to be treated by the top Dr's in the hemangioma field.

Saturday, February 13, 2010


Here are pictures showing what her hemangioma looks like on day two of treatment.She was suprisingly happy this day. We were told most babies don't feel well for the first two days after treatment. This day she was all smiles and cooing a lot, very good for our hearts.
This is the PICC line. The black ties are sutures holding it down in her arm. This is so the line can't get pulled out. The tubing going off to the left is capped off at the end. This is the port we have to flush once a day and how they give her chemo.
We ace bandage her PICC to her arm so she can't pull it and so it's protected from germs.
Ace bandages must taste good to a two month old!