Checking In...

Sorry for the lack of updates today. This is the first time I have been able to sit down since early this morning before the kids woke up! It's been a crazy day! Kellsey is doing better overall. Her fever broke today, finally, and it's stayed down, which is great! The redness on her belly seems to be fading, but the lump right above her G-Tube is still hard and the surgeon is saying that is infection and she is not going anywhere until it's gone. She seems to be doing well on this new combo of antibiotics.

I've been on the phone today with the nutritionist, and at the urging of one of my friends here online who also has a child with Ds and eating issues and a G-Tube, I asked her to consider switching Kellsey from the pediasure to a different formula that would be easier for her to digest. I pointed out that she came from an orphanage where she got VERY poor nutrition (especially hydration) to here where it's been a battle for the last 2 years, and even the little that she WAS drinking had to be SO thick that her body just wasn't used to all the fluids. I get that they want her to gain weight, I do too, of course, but my main goal with this g-tube was to prevent aspiration and keep her safe. To me, gaining four pounds in two days, which is what she did, is NOT keeping her safe. They are overloading her with fluids that her body can't digest and I think her whole system just freaked out. Did it cause the infection? I don't know. But either way, she was getting over 1,500 calories a day which is insane for someone her size who wasn't even getting half that before. There's always a risk too that she could start refluxing with this g-tube which could cause her to aspirate from the bottom, up and that would require yet another surgery for a nissen fundoplication, which is pretty involved from what I understand and I'd like to avoid that if at all possible. So, I asked her what she would give to a newborn who just got a g-tube and she mentioned a certain formula and I told her that that is what I would like for Kellsey for now and at a MUCH slower rate than what she was getting. She said she would have to talk to her ped since he wrote the orders for her feeds and I said that was fine. A couple hours later Frank texted me and said they were starting Kellsey on the new formula, and at half the amount from before. :) Hopefully her body will handle this much better... and if not, we'll adjust again. It's all trial and error for now. I really do like her ped a lot and am so thankful that he listens to my concerns!!

In other news, Kellsey had some fun today at the hospital... she got to meet some princesses, go trick-or-treating and some other fun stuff. Frank took pictures which he sent to me which I will post once I go through them. The other kids had a great time at their school parties and trick-or-treating at my friend Carmen's house tonight. It was a beautiful day here, though it got a little chilly once the sun went down.

Tomorrow Kennedy and I have to be in Denver for her surgery at 9:45. Frank, Carmen and Donna are rotating at the hospital with Kellsey and then either Frank or I will be back there tomorrow night. As long as Kennedy is doing 100% ok and is going back to school on Wednesday, the plan is that I will go back to the hospital with Kellsey. Kennedy usually does great with tubes, so I'm thinking this is how it will go. I should have more downtime tomorrow so I'll be better at updating on both girls. I am hopeful that Kellsey will be out of the hospital by Wednesday... it's birthday week in the Garcia household and I would love for our whole family to be together more than anything!!

OK I really must sleep. I didn't sleep well at all last night and haven't since before Kellsey's surgery so I feel like I'm running on empty. Maybe tonight is the night!! I will get Halloween pictures up ASAP, hope you all had a fun and safe night!

Taking Shifts

I am currently home for the night and Frank is with Kellsey at the hospital. He brought the kids up for a little bit so they could see her and then I took them back home and got them to bed. We have a very busy week this week!

Today has been very long and frustrating. Kellsey is not really doing any better. She still has a fever, still looks like she doesn't feel well, and she has a spreading read spot on her stomach.

They've been using the pens to mark how much it's spread... the inside one was from last night, the next one was from this morning and the outer one was from early this afternoon. It's spread even more since then and is starting to wrap around her back. The on call surgeon thinks it's cellulitis, her ped isn't so sure. They're not agreeing on much today though... 

Her ped was ok with letting Kellsey come home tomorrow with a PICC line in and get her antibiotics at home. They're not really DOING much for her there beyond administering the antibiotics. We've done PICC lines before, we could take care of it easily. He also knows about Kennedy's surgery on Tuesday and realizes we can't be in 3 places at once. I was definitely ok with this plan! 

The Mr. on-call surgeon nixed the idea and said that if I needed to go to Denver for Kennedy's surgery and Frank needed to be with the other kids, then we could just leave Kellsey in the hospital alone. WHAT?! I said, "Ummm NO!" He proceeded to tell me that parents do it all the time. That's great. I'm not one of those parents. No child of mine is being left alone in the hospital, sorry! Especially because when we were there last week, one day post op, a nurse came in and offered Kellsey juice. To a girl who's allergic to fruit AND aspirates on thin liquids AND was NPO at the time. When I pointed to the huge red allergy band on her ankle and the memo about NPO on the wall and told her that she aspirates, she just said, "Oh. I didn't know." This was HER nurse. Why wasn't this info in her file? And if it was in her file, why did her nurse NOT know?! Yeah... I think it's a GREAT idea to leave my non-verbal 4 year old with allergies who nods yes to anything you ask her ALONE in the hospital. Good plan, doc! NOT! GRR!! After I freaked out a bit, Kellsey's awesome day nurse, who we also had last time and were SO happy to have again (this was NOT the one who offered her juice lol) assured me that Kellsey's ped is the one who is in charge in this case and he has the final say. She said that when she talked to him later, she would reiterate how important it was to us to go home, if he felt Kellsey was safe enough to do so. 

Anyway, they started Kellsey on Clindamycin and Gentamicin a little before noon today. Turns out she's allergic to one of those meds! She broke out in a rash all over her arms, legs and back... and probably her tummy too, but we couldn't tell since she still has a rash from the Betadine from surgery on Tuesday... turns out she's allergic to that, too! Since they gave the meds back to back, they weren't sure which one she was allergic to, but they guessed that the Clindamycin was the culprit because it is more commonly one that people are allergic to. SO they have now swapped that one out for Rocephin, but because of the allergic reaction it threw the ped's idea out the door for her going home tomorrow. Bummer. 

So, Frank came up and swapped places with me. Right after I left there was a shift change and this night nurse is about to give me a panic attack. She's undoing everything that's been done. NOT reading Kellsey's file AGAIN, and I'm not there. I know Frank had to be very firm with her and wrote down all the things that she CANNOT do with her in regards to allergies and skin sensitivities and brought up the fact that some of the nurses there do NOT communicate with each other and that could be VERY dangerous for the patient. He asked her if she knew she was allergic to fruit. She didn't. He also asked if she knew that she couldn't have liquids by mouth... as she was about to administer Tylenol. She didn't. If I know my husband, every nurse on that floor will know it now. HA! It's just frustrating. These are important things. I don't expect them to know her favorite color or even remember what size diaper she wears, but if they're coming in in the middle of the night to administer meds to a kid with a G-Tube, you might want to double check before giving those meds orally. Just sayin'. 

OK enough venting from me tonight. I am heading to bed. Tomorrow I'm going to hang out with my kiddies here and then my friend Carmen is coming over and we're going to take the kids to the hospital to see Kellsey really quick so they can get a group Halloween picture done in their costumes. Not sure we've ever had one with a hospital room background before. HA! I guess I'll have to think of a creative story to go with it. Then Carmen and I are taking the kids trick-or-treating in her neighborhood. 

Frank will be staying one more night with Kellsey and then coming home early Tuesday morning when Carmen will swap places with him and sit with Kellsey for a bit. Frank will get Kameron to school and then he and Keeghan will head back to the hospital so Carmen can go home, and they will hang out there for the rest of the morning. Then my friend Donna will be sitting with Kellsey for a bit in the afternoon. Meanwhile I'll be in Denver with Kennedy while she gets her ear tubes put in. I'm so thankful this worked out so we didn't have to reschedule! I was really stressed about this because I didn't know if I'd be able to get her back on the calendar before Frank deployed. Thank God for friends! THEN if Kennedy is feeling ok (which she should be, she usually bounces back really quickly from ear tubes) and Kellsey is STILL not home, I will go back to the hospital with her and Frank will come home with the kids. Hopefully by Tuesday afternoon though she'll be feeling much, much better!! 

If you got this far and listened to all my ranting, thanks! I needed to vent! Please keep praying for Kellsey. She has a ways to go yet! 

Long Night

Kellsey had an awful night's sleep last night. She whined and moaned and cried and laid in bed wide awake most of the night. They gave her an enema to help clear out any stool she had inside her, but since she just went A LOT yesterday, it didn't work. She does have a red area above her g-tube that is really firm. Her nurse last might drew a circle around the area with a pen, and this morning it was bigger, so they drew another circle. They also did more blood work this morning... I guess they're checking for different things? Not sure. Her pediatrician is supposed to be in to see her this afternoon.

Once we know what's going on, Frank will have to talk to the people at work if she's staying another night and then I think we will switch places for the night. That way I can be there for the kids tomorrow to help them get dressed up for school and stuff. Tuesday is Kennedy's surgery to have her ear tubes put in and that's in Denver, so if Kellsey's not out by THEN, I guess we will have to reschedule. Can't be in 3 places at once. *sigh*

Anyway, right now I'm just waiting for her ped who I just found out is here on the floor somewhere, so maybe we'll have some answers soon. I'll update again later.

Back in the Hospital

Kellsey is back in the hospital. She has been acting funny today and ended up spiking a fever this evening. I had instructions to call the surgeon's office if her temp got over 100.5, so I called them and they wanted her seen by ER. When I picked her up, she cried when I held her against me and started drawing her legs up like her stomach hurt. So, off we went.

The ER did an xray of her stomach, drew blood and checked her urine, but everything came back normal. In the meantime, despite Tylenol, her fever went up. The ER doc called the on call surgeon and Kellsey's ped and they decided to admit her overnight. They are getting ready to drain her G-tube and see what comes out. I'm sure A LOT of stuff will. She's been getting about 10 times the amount of liquids that she is used to. I feel like we are flooding the poor girl. Even the on call surgeon was shocked by the amount of pediasure she was getting, but that's what the nutritionist told me to do... I don't know how that would cause a fever though. :o/

Anyway, hopefully they will figure out what is going on so we can get home in time for Halloween!! Please keep her in your prayers!! I'll update when I know more.

Lazy Day...

Sorry I haven't posted today... we have been getting readjusted to home routine and since Frank had the day off today, while the big kids were at school, my mom and I went out and did some shopping... we have a few birthdays coming up soon ;o). I found exactly what I wanted for one little birthday girl and even found a Christmas present too. We also got cakes ordered for parties and stuff like that. I love this time of year!

Speaking of this time of year, Halloween is Monday which is one of our favorite fun days around here! The kids costumes are all ready and they can't wait for the big day! The oldest 3 actually get to wear costumes to school here which is pretty neat. Kassidy is restricted to a theme there so hers might be a little harder, but Kameron and Kennedy will definitely dress up. I don't think Keeghan and Kellsey get to dress up, but we haven't been there in so long, I'm not sure! haha I know Kellsey will be happy to get back to school on Monday.

Kass is off tonight with a friend at her church for movie night, and the rest of the kids are running around except Kellsey who fell asleep in her dinner. I think she got used to napping in the hospital! We are enjoying a quiet evening before a busy weekend. Tomorrow we have soccer and then my mom goes to the airport to go back to TN. We'll all be sad to see her go.

Anyway, I'm going to watch this movie and head to bed soon. The morning will be here way too soon! Hope everyone had a good Friday!!!

Home!

Kellsey and I got home around 4:30 this afternoon. The kids were so happy to see her (and see all the cool stuff she got at the hospital! haha) and they had fun playing and hanging out. She is in bed now and hooked up to her nightly feed. Seems weird having an IV pole in her room! Thankfully I remembered how to get it all going, and I'm 99% sure I did everything right. They trained me well. ;o) We go back Wednesday to get her stitches taken out around her line, which is the same day as her Neuro appointment which happens to be in the same office, so that works out nicely!! In the meantime I have lots of phone numbers to call should I have any questions or anything, but so far all is going well.

Anyway, not a whole lot to say... she is doing well and I am exhausted! I am going to relax a bit and catch up on some TV and then go to bed. Thanks for all the prayers lifted on Kellsey's behalf! More tomorrow...

Breaking Out of Here!

Kellsey had a pretty good day yesterday. She took a ride in a wagon around the ped's floor (and she decided that maybe I'm not a very good wagon driver. I guess I'm out of practice from my wagon driving days with Kennedy! haha), she got to visit with two Olympic athletes who read her some stories, and then our friend Laura came to visit and brought her a bag of treats like a coloring book, a pretty bracelet, some finger puppets, a stuffed bear, and best of all a new magna doodle! It's even travel sized, which  will be good for the car. ;o)

They started the Pedialyte in her G-Tube yesterday which she seems to be tolerating well. They are slowly bumping it up and should be switching to Pediasure sometime soon here. They say we should be going home this evening as long as all continues to go well. Apria Home Health will be setting us up at home with a similar pump and all the supplies we need to keep her feeds going there.

The only really strange thing that happened last night is that out of nowhere Kellsey started sweating! She wasn't running a fever, the room wasn't warm... nothing. It was almost like a cold sweat. Her hand were clammy and her head and back were covered in sweat. We have NEVER seen her sweat before. I reached out to my group of moms that I joined recently who all have kids with different pain insensitivity issues and the ones who have kids with anhidrosis as well said that they have seen their kids sweat once or twice (a couple of them said that their kids have sweat in the hospital, ironically) another mom mentioned that it could be a deep pain reaction, that even though she's not feeling pain on a superficial level, like we do, her body could still be reacting to pain. SO I had them give her some Tylenol and sure enough she's stopped sweating. So strange! We go see Neurology on Wednesday and I can't wait to see what he has to say about all this! Kellsey was really kind of freaked out by it though. She kept touching her head like, "I don't understand!" Strange!!

Anyway, here are a couple pictures... Kellsey playing this morning... with her board of course, and one of her button... it's hooked up to pedialyte still, but it's healing nicely. And one of the view outside our window... lots of snow out there!!! It looks so pretty with the sun shining down on it. :o)

Q&A #220

Now is she going to have surgery for her g tube insertion? If so why such a long hospital stay? 
Yes, it's for her G-Tube (though you've probably figured that out by now. haha) Day 1 nothing could go through her tube so it could heal and drain. Day 2 (today) they are going to run pedialyte through it. Assuming all goes well, tomorrow they will run Pediasure through it on day 3. During all this they will be training me on what to do, setting up home health etc and being that she is doing so well we may actually get to go home tomorrow which is exciting!! We were thinking we may be here until Friday! But we'll see how the pedialyte goes today before I really get my hopes up. 


Oh I do have a question! Since they are bringing troops from from afghanastan and Iran, will Frank still be deployed and for a whole year? I hope this will stop him having to go there but have no idea about all that. 
Yes he leaves the beginning of 2012 and as of right now they are still saying a 12 month deployment. 


why is kellsey having to get a gtube?
For a couple reasons: To help with her severe aspiration. We were having to thicken her liquids a LOT to keep her from aspirating. This was making it hard for her to stay hydrated. She also has some eating issues... some sensory, some behavioral, some related to CIPA and the fact that she doesn't taste food or feel hunger, so eating is a totally social thing for her... and she does so only when she chooses thus making weight gain an issue for her. She's almost 5 and only 25 pounds. SO this tube will help her gain weight and keep her hydrated. She will get NO liquids by mouth at all to eliminate the worry of aspiration and she'll be getting 100% of her calories by the G-Tube, however, she will still be able to eat by mouth when she wants. This still keeps her in the habit of eating but takes away the struggle of food between her and Frank and me, which is a huge relief! If she chooses not to eat now, no big deal. I can feel assured that she is still getting all her calories via her tube and there's no battle and no stress on either of our parts. 


What's a cake walk? I am imagining all sorts of things lol! 
LOL you must not be from here! :o) So people donate a bunch of cakes or pies or cupcakes and then there are a bunch of numbers taped to the floor. Everyone stands on a number and then music is played. While the music is playing, everyone walks in a circle (kind of like musical chairs). When then music stops everyone stands on the number closest to them and then someone chooses a number from a bucket. The person standing on that number wins and gets to go pick a cake. It's lots of fun! The kids school stepped it up even more and made them dance as they were walking in the circle and also gave out cakes to the best boy and girl dancers for each round. They had A LOT of donations!!! The kids all enjoyed it!!


Totally of the subject but did you know that the McRib is back? I know you blogged about it before!
YES!!! I may or may not have eaten one for dinner the last two nights in a row. ;o)


I was just thinking, this is her first surgery? No wait, she has tubes and her adnoids were removed, right? 
Correct, she had her tonsils and adenoids removed and ear tubes put in back in February. 


How is Kass's arm???
It's good, the orthopedist decided to put her in a brace this time instead of a hard cast. She has to wear it for four weeks, but she can remove it to shower which is REALLY nice!! 


Just wondering if there is any concern that she will rip the tube out, especially since she doesn't feel pain? Is that a big deal? 
I am not too concerned about that only because she's a pretty passive kid. However, that being said, I'm not taking any chances. We're going to get her some onesies to wear to school and stuff to limit her access to her button. I guess I don't want to give her too much credit! haha They're going to give me an extra button and teach me how to put it back in, but I really hope I don't have to do that often!!


Glad she's doing well. How long are you all stuck there at the hospital?
Hopefully not too much longer!! I'm going to see if she wants to go play in the playroom here in a bit and get up and moving. She's really tired right now, probably from not sleeping much last night, but I think she'll feel better if she can get up and moving. 


So is it safe to say that she's not experiencing pain or discomfort (because of her condition?) I suppose that can be a blessing in disguise for THIS particular situation.
Right, she hasn't had any pain medication since right after surgery and they only gave her that because they felt like they should... and then it made her feel sick. I GUESS it's a good thing, but it worries me because if something is wrong (like infection) would we know? The only time we've known her to run a "fever" is if she's overheated from not sweating. We have never seen her run a true fever from being sick (because she's never truly been sick) and even when she had her ruptured ear drum, she never rain a fever or cried from the pain, so that part of it kind of concerns me. Don't get me wrong, I am glad she's not in pain right now and is just chillin in her bed, but sometimes pain is a blessing when it lets you know something is not right. 

Pardon my ignorance, but does the button look BIG to me (compared to others I've seen) or is it just the close up coupled with the drain that is confusing me?) 
I think it's just because of the drain... that is kind of big. The button itself is pretty small. I will take another picture once they unhook her today. 


I don't know how you will be feeding her. Over night via pump or by hand but, you might find these helpful I really suggest the pads for her first time. Since she can't feel pain, she might rub at the area while she gets used to it and the pads will cushion her skin.
Thank you! I didn't even think about that! She does sleep in footed pajamas every night and will be on an overnight pump... I didn't even think about access to her tube through that! She'll also be getting 3-4 bolus feeds a day. Hmmm... I think I will order some of these. Thanks! :o)



I have some personal questions about Kennedy so I understand if you don't want to post this comment or answer them I understand.
Does Kennedy know that she has Down Syndrome and what that means? How did you explain it to her? Also, Kennedy seems very high functioning. Do you think it is because of nature or nurture? What is her IQ?
At this point in time, she doesn't "get" that she has Down syndrome or that she is any different than any other kid. I think she knows that she has to work harder than some of the other kids in her class, but I don't think she knows WHY. It's interesting because we were watching one of our shows last season "Parenthood" and there's a little boy named Max on there with Autism. His parents were raising money for an Autism walk or benefit or something because of Max and he got excited and said, "Yeah! Let's help those kids with Autism!" The parents were shocked that he didn't realize they were doing this for HIM so they sat down and explained that he had Autism. It was very heartbreaking and real and "Max" asked some hard questions. (His character was a few years older than Kennedy... 10 or so maybe.) Eventually, I DO think Kennedy will GET that she has Down syndrome. I know there are MANY self advocates with Ds who talk about it all the time. Right now though, she's just a "sincess" or "Hannah Montana" or "Rocky" or whoever she chooses to be for the day. We talk about Down syndrome a lot in our house, especially when we go to Buddy Walks or do other events, but we work so hard on making sure that everyone else treats both the girls the same as the other kids that we don't really want to point out to them that they're different, if that makes any sense. I think Kennedy is doing very well in a lot of areas. There are some areas, where of course I think she could be doing better, but I'm her mom and I want the best for her! I attribute a lot of how well she is doing to Early Intervention. I will sing their praises forever! She started therapy at 3 months old and TEIS was amazing. And of course part of it is just WHO Kennedy is... for better and for worse. Her upside down e's for example... I worked on those with her, her OT worked on those with her, for over a YEAR to no avail... and then one day she just started writing them correctly and never looked back. And she has always been like that with every milestone... she doesn't get it, doesn't get it, doesn't get it, but then, it clicks and she never looks back. Part of it is nature, part of it is nurture, part of it is just... HER. Her IQ is 69. That being said, I totally hold NO weight in IQ tests done on children with Ds done so young... so take it for what you will. ;o)

Post Op Update

Sorry it took me so long to get online here! I was having issues getting my computer connected, but the wonderful IT guys helped me out! Kellsey is doing REALLY well right now! She is smiling and playing with her magna doodle :).

We got to the hospital around 7:15 this morning and Frank was able to stay for about an hour before he had to go to work. The Child Life people gave Kellsey a brand new magna doodle which she was thrilled with, of course! ;) They offered her an iPad to play with and she played with it for a couple minutes and went right back to drawing her circles haha. That helped pass the time while I answered the questions of the surgical team. They were all very nice.

Kellsey went back to surgery right around 9:00 as scheduled. They let me go back to the operating room with her. I've never been able to do this before. She did NOT like everyone wearing the masks, especially me, so thankfully they let me keep mine off. Aside from that, she did really well. They gave her her mask which smelled like bubble gum and she was all over that. She started chewing on it. A few minutes later, her eye lids got heavy and she was sound asleep. I gave her a kiss and went out to the waiting room.

The surgery itself took about an hour. When they called me back to recovery she was already awake and watching a movie. She was a little shaky from the anesthesia, so they put a heated blanket on her which overheated her within a few minutes and she started freaking out. Once they got it off her and she cooled down, she was much better. They did give her some morphine to preempt any pain, just in case, and that made her a little nauseated, so they followed that up with zofran which helped a lot.

She has seen the tube in her stomach and is not too happy about it. She keeps pointing at it like, "What IS this thing, and WHY is it on me?!" Right now there is a drain hooked up to it which is emptying yucky stuff out of her stomach. I'll spare you a picture. LOL Tomorrow, providing all goes well, they will start running pedialyte (sp?) through it and then the next day they'll start her on pediasure. Right now she's NPO (nothing by mouth) so she's getting all her nutrients via IV.

So far this afternoon she has had a volunteer come read a story to her, another one came to show her some magic tricks (she was totally NOT impressed! LOL) and another came in with a really big dog that looked more like a horse! This is a fun place to hang out if you're feeling well! She's perking up more and more as the anesthesia wears off, so I think by tomorrow she'll enjoy these visitors even more. I've been getting a few smiles and she's blown me a few kisses though, so I think she's doing ok!

Here are a few pictures...

Hanging out in pre-op

Getting ready to go back... blue is SO her color!

Post-op... we had just got up to her room

 Feeling a bit better here and ready to play

Her G-tube... the red is betadine, not blood. ;) The stitches around the tube will come out on Halloween. 

I'll update again soon... tonight if anything changes or tomorrow morning. I know I need to get another Q&A up soon, too. Thanks again for praying for my girl. 

Cleared for Surgery

This morning Kellsey had her upper GI which showed that everything inside her is exactly where it should be. The radiologist was looking for malrotated intestines and other fun stuff. :o/ Thankfully, none of that! He was also checking for reflux since no one seemed to believe me that she was only aspirating and not refluxing. They believe me now. ;o)

This afternoon we met with the nurse practitioner in the surgery clinic who is an expert in all things G-Tube (and I imagine lots of other things). She answered every question I could think of, showed me a G-Tube, talked about what I would do if it falls out and all that fun stuff. We talked about her surgery tomorrow and LOTS of other details. I feel mostly prepared now. Unfortunately, there's no real way to prepare Kellsey for this. We showed her the button, but of course she doesn't really get it. While we all agree this is the best thing for her right now for so many reasons, she's going to be one unhappy little girl for a few days, I'm afraid.

We go in tomorrow at 7:15... surgery starts at 9:15. I'm not exactly sure how long it will take, but I'll be updating on Facebook and then eventually here on my blog. The hospital has free wi-fi. Yay! :) Please keep my sweet girl in your prayers tomorrow, that she's not too confused and that everything goes as planned. Keep her surgeon in your prayers as well. I know she's done hundreds of these, but she can use prayers anyway, right?

Thanks in advance for your prayers!!

Accomplishments of People with Down Syndrome (Part 9)

OK so this video is long. We're talking 12 minutes long here! BUT seriously, you need to meet Luke Spinelli. He is a high school senior with Down syndrome and he is awesome! This is his senior project showing his path to independence and I think he's doing a pretty dang good job. Let me tell you, when I was a senior in high school I didn't do some of the stuff he's doing... like ride my bike to the YMCA! (Or... you know... exercise! *ahem*)

I love Luke's sense of humor and his outlook on life. I would love to know more about his academic career and what that looked like.

Anyway, take the 12 minutes to watch. Kennedy watched it with me and said, "He's kinda cool!" I would have to agree! :) It was nice getting to know you, Luke!

Still Here...

I'm still here... we've been enjoying the beautiful weather this weekend. Yesterday I took Kameron and Kennedy to the Fall Festival at their school. It was a lot of fun! Lots of games, food, prizes and stuff. Kameron ran off with some friends from his class and he said he liked the dunk tank best. His principal was up there for a little while. I don't think he actually threw any balls, the line was really long, but he watched for awhile. Kennedy loved the cake walk the best. The line was long for that, too, but after she played all the rest of the games, we spent the rest of the night going through the line for that cake walk over and over! HA! She brought home some cupcakes and Kam brought home some cookies. It was a very fun night and I think they both slept well! ;)

Today we went to church and then my mom, Kassidy and I went out shopping for snow gear... because well... look at our forecast this week:

Yep, Wednesday looks fun! ;) So grandma bought all the kids snow boots in preparation for Winter... or ummm... Wednesday. Whichever comes first. She may have bought me a pair, too. ;o) Thanks, Mom! :) We were looking for snow pants too, but only found some for Kassidy, so we're going to try to find some for the rest of the kids tomorrow.

As for tomorrow, Kellsey and I are going to spend the beautiful day running around. She has an Upper GI at 9:00 and then a pre-op appointment at her surgeon's office at 1:30. Tuesday morning she will check in at the hospital for surgery at 7:30. Her surgeon said to plan for a 3-4 day stay in the hospital. I'll post more about it tomorrow after her pre-op appointment. I have lots of questions still!

Anyway, I am off to watch a little TV and then go to bed! I hope you all had a wonderful weekend!

Accomplishments of People with Down Syndrome (Part 8)

Today we are continuing to talk about amazing athletes with Down syndrome... those who have wanted something so bad, gone after their goals, and succeeded... and in the meantime made a bunch of friends, changed some hearts and opened the eyes of everyone they encountered!


I can't believe I didn't include a dancer in my last post, but wait until you meet Nicole Smith! She is one of the most gracious and beautiful dancers I have seen in a long, long time! Watching her makes me want to let Kennedy go to dance every day just so she could maybe get to Nicole's level someday! She's truly inspiring! Nicole has been dancing since she was 6 years old and practices several hours a day, even when she's not on the dance floor. She also holds down a job to help pay for her dance lessons. Watch the video, read the article, she rocks!

This beautiful girl is Thalia Arbelaez. She has been dancing since she was 2 years old and now travels the globe doing shows and modeling. Thalia is a student at Patel Conservatory where she works hard and is breaking stereotypes every day. "If dance classmates initially judge Thalia when they see her, their opinions disappear when the class begins.She said Thalia's dancing is infectious and inspires other students to do better themselves."

"When we start the music, when we start the class," Downey said, "all that just melts away." Thalia is a wonderful self-advocate and I wish her the best in her dance career!! 

Ross Barron is a high school soccer player... part of the team. He's been playing soccer since he was 5 years old, and it was always his dream to play in high school as well. his coach took him on, and his teammates loved him! They called Ross' head, which was bald from Alopecia, their good luck charm and rubbed it before every game. During Ross' senior year of high school, the coach set it up with the other team's coach for Ross to score his first goal during a game. Both teams and hundreds of people in the stands cheered him on when Ross made that goal. His coach literally cried tears of joy, and then Ross cried some tears of sadness realizing that his high school soccer career had ended. Next year he will be back though to be the assistant coach, and he plans to eventually go to college. Best wishes to you, Ross! May your college career be as successful as your high school one was! :)

Todd Claeys has overcome 3 heart surgeries, but that hasn't stopped him from being an amazing hockey player. He is a senior and has been playing floor hockey for his high school the whole time he's been there. He also runs track and field for Special Olympics, and he inspires everyone around him. Watch this video and read the article to learn more about Todd! 

This is Lauren Miller ice skating at the 2011 Special Olympics Skating Expo - Lauren has Down Syndrome and is 13 years old. She has been skating since she was 6 years old. Lauren is also Global Messenger for Special Olympics Illinois. I've never been on ice skates in my entire life, but I promise you, I could never do even half of the moves Lauren does! She's awesome! Way to go Lauren!! :)





OK I think I've given you enough inspiration for the day! Watch for another post in a couple days! :)

Q&A #219

Love all these athlete "spotlights". I may have to 'steal' them for a 31 for 21 post ;)
Feel free!!


You should look into this program and see if there's a squad in your area. 
There are 3 in CO, but none near us. What a neat program though!!!


Did you know Carrie and Sujeet are divorced now? I found that out last year, or maybe it was earlier this year...made me sad. But I guess its just like the 'typical' marriages; divorces can happen amongst people w/Ds too.
You know, I thought I had heard that too, but I couldn't find anything online backing it up so I didn't want to post it and be wrong! That is sad, but statistically speaking, I guess it's bound to happen. :( 


The good news is you will be laughing about this someday - so will Kassidy. 
I told Kassidy this and she said, "Today is not that day!" LOL 


Are you doing Kellsey's GTube at Presbyterian St. Luke/Rocky Mountain Hospital for Children?
No, actually that will be done right here in Colorado Springs at Memorial. I have heard amazing things about her pediatric surgeon. :) I think she will be in good hands! 


YAY for Kennedy being 100% in remission! Is there such a thing as being in remission but not 100%? I am not asking that to be funny, I seriously would like to know.
HA! No! LOL Sorry for the confusing wording. You're either in remission or you're not... kind of like being pregnant or not. I guess I was just excited. :o)


So did you get you order the glasses that the guy didn't like? Bad momma if you did. I have found that getting another opinion is better! (LOL) I wish I had taken someone with me when I chose my present glasses. If they didn't cost an arm and a leg, I would get different frames.
No, I didn't get them! LOL I figured the guy who worked there must know better than me, especially since I tried about 20 pair of frames on her! hahaha I hope I chose the right ones... they're pink and she doesn't wear a whole lot of pink, but they really did look the best on her... I think. LOL 


Also, since you guys go up to Park Meadows Mall on occasion, did you know that Mile High Down Syndrome Association is having a Halloween party this Saturday? It's not too far from that mall. There's a little more info here: http://mhdsa.org/events/index.html It'd be fun if you could make it! :) 
Thanks! Kass has a soccer game on Saturday and Kam and Kenn's school has a fall festival that day too, so we're all booked up, but otherwise we would have loved to go!!


How's Kennedy doing oncology wise? I guess maybe that question will be best answered after her next appointment, but I hope she's doing well :) 
Just great! We're on every 6 month visits now. :)


I think Rocky Mtn ENT is by Presbyterian/St Lukes. 
YES! That's it! Thank you! :o)


Very touching stories! I am curious though, do you know of any people with DS that have married people without DS? 
Yes, I have heard stories of people with Ds marrying people with other disabilities, like autism. I have not heard any stories of a person with Ds marrying a typical person... but that doesn't mean it hasn't happened... 

Also, if 2 DS people have a child together, will it definitely have DS?
I know that women with Ds can have babies and have a 50% chance of having a baby with Ds as well. MOST men with Ds are sterile according to NDSS, although I have heard of 2 men with Ds who are fathers. I would guess they would have the same 50% chance of their child having Ds... so the chance would be very, very high. 

I am curious too if these adults with DS actually have the cognitive awareness of marriage and responsibilities of adulthood or is it just like two children marrying (mentally)?
From the couples that I have met, yes, they absolutely understood love (and all that marriage entails intimately), the responsibilities of marriage and even living on their own (or whatever their arrangement is). They each held down jobs, paid their own bills (sometimes with a little help), cooked their own meals, cleaned their own houses, etc. They may have more of a written out schedule than a typical couple, but they definitely "get it". 


I was wondering if you were considering getting her tubes tied when she is older like so many other families have done for their DS daughters? It seems from what Ive read that they dont want to take chances with a pregnancy. What are your thoughts on this?
I'm not sure yet what I'm going to do about puberty/fertility issues for either of the girls yet... nor do I think it's solely my choice. When we lived in TN we had an awesome doctor at the Down syndrome clinic who said she would do whatever I wanted when it came to "that time" for Kennedy. She would completely stop her periods if I wanted or whatever. At this point, I feel like Kennedy will probably be able to handle that part of it. I'm not sure about Kellsey. We're still a long way off... thank the LORD! Many young women with Down syndrome realize that they cannot care for a child of their own and choose a permanent form of birth control. This will be something that we will discuss with the girls when the time comes. Because of the chemotherapy Kennedy was on, she may never be able to have children anyway. So, all that to say, I don't know how I feel about it yet. LOL And I'm glad I have a few more years before we really have to start thinking about it. 


Are there any stories that you know of of people with Ds parenting?
We recently ran across a picture of a family... the mother has Down syndrome, the father, we don't think does and we're pretty sure the baby does not. However, there's no story to go with this picture. We've searched and searched for the story behind this beautiful photo and cannot find it. I would love to know their story. I personally have not heard of anyone with Down syndrome parenting. 


Questions - What happens at these National DS conferences? Are they weeklong, weekends? Do you need to be a member to go? I hear of them often on other blogs, and on forums, but can you shed some light on what they are all about and are they worth going to? How much do they cost? Are the national ds congress and the national ds society the same? 
These conferences start on Fridays and run through Sundays. They change locations every year. When you register for the conference, it includes a membership to the NDSC, so technically, you DO need to be a member to go. They're pretty expensive... It's a couple hundred to register plus airfare, plus hotel... and they always seem to pick a REALLY expensive hotel. *sigh* However, the experience is amazing! For one weekend there is just this community of families just. like. you. People with Down syndrome of all ages everywhere! There are breakout sessions on every topic imaginable and the hardest part is deciding which session to attend. They have a dance where everyone gets really dressed up, especially the older kids with Ds, and they party! We've been to two: 2005 and 2006. (In 2007 Kenn was doing chemo, 2008 was spine fusion surgery, 2009 we were saving to go to Ukraine, 2010 Frank was deployed and life was crazy and 2011 we were in the process of moving.) Next year it's in Washington D.C. and Frank will be deployed again so we probably won't go, but if you get a chance I definitely recommend it!! NDSC and NDSS are not the same. They are both national Down syndrome organizations and they both do great things, but the conferences are sponsored by the NDSC (the Buddy Walk was started by NDSS). Hope that helps some! :)

Cast Free... or NOT!

So, like the majority of my blog posts, this post was pre-written and set to publish for right now. However, I am now editing this post and NOT for good reasons!

Yesterday Kassidy got her cast removed after a very long 4 weeks! I know in the grand scheme of broken arms that was a short journey, but she was SO ready to have it OFF, and... you know, wash off the nastiness! ;o) Her arm is a little sore and a little bruised, but they said that was normal and the more she uses it the faster it will get back to normal.

One last cast picture of her red cast

Getting it cut off...

No after picture because she said her arm was gross. 

THEN I said, "Hopefully we won't have to deal with broken bones again for a long time." WHY did I say that?! So today around 10:00 I got a phone call from Kassidy's school nurse. Never a good sign. Kassidy was in an assembly, and she stood up to wave to a friend. When she started to sit back down, the boy next to her pulled her chair away, and she fell. Her instinct was to brace herself of course... with her arm. Her right arm. The same one the cast just came off of. And it snapped. *sigh*

So I picked her up and called her orthopedist on the way. They couldn't get her in until tomorrow so we headed to the ER where they did an x-ray, and sure enough, it's broken in the same spot that it broke before. Another buckle fracture. Grr!! I was so angry!!! So she's back in a splint for now and ortho will decide tomorrow if she needs to go back into a hard cast. 

After we left the ER, we went back to Kass' school to get her backpack and stuff and I talked to the Dean of Students about this boy Timmy who pulled Kass' chair out from under her and he said that he called his parents and he's being punished but he wouldn't tell me what his punishment was exactly and then he went on to say that Timmy is a "good boy" and that "you know how 6th grade boys are" and asked me if I have boys of my own (like that makes a difference) and then said that if Kassidy hadn't just come out of a cast that her wrist probably wouldn't have broken. So glad he knows that. Grrr! He was making me angry so I just bit my tongue. He did say that he would have Timmy apologize to her tomorrow... so that better happen. I get that kids do dumb stuff, and one day one of my kids may do something just as dumb without thinking. I just hope that his parents will talk to him and make him realize that Kass got hurt by this prank, whether he was trying to be funny or mean or whatever, and that it could have been much worse. 

SO now Kass will probably be in a cast through Halloween and her birthday, which stinks. :o( And if this is a case of a boy trying to flirt with her, and she ends up marrying this boy someday, I'm never going to let him live this down. Just sayin'. ;o) OK really this time... no more medical stuff till Monday... I hope. 

Accomplishments of People with Down Syndrome (Part 7)

Well, we've covered famous people with Down syndrome and college and weddings and homecoming king and queens, so today I'm going to focus on athletes. As you know, Kennedy loves to dance. She's been dancing since before she was walking, and the girl has some moves! ;) This is her first year dancing competitively, and she's enjoying every second of it from the routines, to the costumes, to the camaraderie of the matching warm up suits complete with rhinestones. Kennedy works hard in dance and asks every day if it's Thursday so she can go to class. Who knows where her dancing will take her, but these individuals should show you that anything is possible! :)

Chelsea Werner is a star gymnast and a cheerleader at her high school. Take one look at her in the video below and you'll have NO questions why she holds those two titles. She's amazing!!

Mike Bailey is an accomplished special olympian in several sports! He swims, runs, does weightlifting and much more. Over and above that, he goes to college and holds down a job. Read Mike's story and see pictures of his Olympic journey! I know you'll be as impressed as I was! :o)

And we're back to Sujeet Desai again. I can't talk enough about this young man! Actually, I'm just going to let HIM do the talking for this section, because he says it better than I ever could! "I have been doing the martial art "Tae Kwon Do" for last 7 years. I won the Bronze medal in the NY State Tae Kwon Do tournaments in 1994. November 7th 1998 was the big day in my life as I earned the black belt. Now I am working on for the second dan. I participate in different sports all year. I love alpine skiing, swimming, cross-country running and bowling. I won many medals in state tournaments for each of these sports. Most memorable sport event was in North Carolina World Games'99 special olympics, where I won two silver medals in aquatics." That's quite a list to add to his many musical talents!! You are an inspiration, Sujeet! 

This is Deborah Law, as of 2006 she made her 4th appearance in the National Bowling Stadium and her 13th in the United States Bowling Congress Women's Championships. Deborah has been bowling most of her life with the rest of her family, and my hope is that even in 2011 she is still going strong! 

Arielle Brantley may be following in Deborah Law's footsteps. She joined her high school bowling team and lettered her first year out. Her teammates are cheering her on as they watch her game continually improve. One of her friends and teammates has this to say about Arielle: "She's awesome," said senior teammate Amber Ronan. "She always knows how to cheer us up. No matter what (score) she gets, she's always glad to bowl." Her mother on the other hand, talks about the struggle she's had with the school to have Arielle included in academics, though she won with a fight! She went on to say that in the athletic field, they've always been more willing and accepting of Arielle... no fight needed. Be sure to watch the video on the article about Arielle! It's a good one! 

Megan Bomgaars is from right here in Colorado... and that makes one of my new goals to meet her someday! :) From the sounds of it, she and Kennedy have a lot in common. Megan has dreams of being famous, being on TV, and... being a cheerleader. When she began her freshman year at Evergreen High School, they told her she should try out... so she did. And she made it. Now she has lots of friends, goes to sleepovers with her teammates and has a very busy social life. As far as being on TV and being famous? Well, she got to do that, too! Megan went with her team to the National Championships which was televised, and thus fulfilling one more of her dreams. Be sure to go read this heartwarming story, see what Megan's teammates have to say about her, and why she's a very influential member of the squad. 

Brad Hennefer is a member of his high school basketball team... He has made considerable contributions to his team, and like other stories, his teammates had nothing but good things to say about Brad. One teammate said, "Brad is pretty unbelievable," Berlinsky said. "I know people can be cruel, but Brad carries himself in such a respectful and mature way, he never really faces that kind of stuff, at least not here. Brad is probably the most popular kid in the school." Beyond playing basketball, Brad is a New Jersey Special Olympics Golf Champion and helps his father coach kids with disabilities in his spare time. Be sure to go read about Brad and meet this awesome young man! 






















OK I have a few more athletes I would like to highlight, but it's going to have to wait until next time! ;)

Down Syndrome Awareness!

This is a precious video full of pictures of kids with Ds and lots of GREAT info and facts about Down syndrome as well. It's all info you've probably read here and there if you've been reading here long enough, but it's good to have it all in one place... and the cute faces make it MUCH more fun to watch! ;) You may even see a couple beautiful little girls that you know in here.

Kennedy and Kellsey Update

OK last medical update for a little while (I hope!). Kennedy and Kellsey saw the ophthalmologist this morning. They got their eyes dilated and Kennedy got to identify funny black shapes on a screen lol. The doctor looked at both their eyes and Kennedy's prescription changed just a bit so she gets new glasses, much to her delight. She had already found fun new frames in the eyeglass shop that were "gorgeous!" (I'm glad she thinks so!). Kellsey, as it turns out is extremely farsighted and has astigmatism (her eye is shaped like a football) and therefore she needs glasses too. She wasn't as excited as Kennedy was. LOL I tried lots of frames on her and finally found frames I'm ok with. I actually found ones that I thought were pretty cute and the guy in the shop told me I could NOT put those on her! HA! I guess he didn't like them! LOL I also ordered a strap for them in hopes of keeping them on... let's see how that works out for us. ;o) Both their glasses will be ready in a week and of course I'll post pictures of their new look!

This afternoon Kennedy had a check up with oncology. I really like her new doctor and all the staff there! They were all very nice. The doctor spent a lot of time with us getting Kennedy's history and I told him what's been going on with her recently. He pulled all her records from the hospital to go over and it turns out that her blood work from yesterday is back in completely normal range, so since she hasn't had a fever since yesterday morning and has only complained about her tummy hurting once since then, we're going to chalk it up to a weird Kennedy thing for now. It wouldn't be the first time that she's had a quirky infection happen. He said if her fever returns or if her stomach pain comes back really badly again to get her back in, but for now he's not concerned, so neither am I! So strange!!! Most importantly, she is still 100% in remission and we don't have to go back for 6 months! :o) When we go back in April we'll be at her 5 year from diagnosis mark. Crazy! I am praying hard for a completely BORING rest of the week! ;o)

Monday is Kellsey's pre-op and Tuesday is her surgery to get her G-tube put in so now we're just going to get ready for that! Thanks again for all your prayers for Kennedy, they worked! :o)

Accomplishments of People with Down Syndrome (Part 6)

Until recently, maybe in the past decade or so, marriage between people with Down syndrome seemed... unlikely, at best. Recently though, it has come to the limelight, and more and more couples with Down syndrome are successfully getting married (and sadly, as goes with today's society, sometimes getting divorced) all the time. Here are just a few couples with Down syndrome who have tied the knot.

If you have HBO on your TV, you've undoubtedly heard of Monica and David. Their reality show highlighting their lives, and their wedding, has taken the country by storm. I'm not sure if their series is still on because we don't have HBO, but definitely check it out if you have time!

Paul and Andrea were the first couple with Down syndrome to marry in Britain in 2006, and it didn't come without a fight. They had to prove to many nay-sayers that they understood what love and marriage meant. But they did it and now live in a beautiful one bedroom flat (that's an apartment for us Westerners) ;) Be sure to take the time to read their incredible love story. It will warm your heart.

So for this next story, I have a little more of a personal involvement... though the couple in question has no idea. Meet Austin and Christi. They met at the National Down Syndrome conference in 2004. Christi, who was from California and Austin who was from Texas, instantly bonded. The next year I attended the same annual conference, this time in Anaheim, California. Kennedy was just over a year old and my mind was blown by all of these people with Down syndrome, doing completely normal things... hanging out with friends and driving cars, and... you know... walking! ;) So I was in this hotel, in line for coffee, and behind me was Christi. I talked to her while we waited. She indulged my silly questions while she played with Kennedy. My last question to her was, "Do you have a boyfriend?" I was grasping onto every sense of normalcy and a future for my daughter that I could. She smiled at me and said, "I do! He's going to be here later!" Just then someone tapped her on the shoulder... she turned around and exclaimed, "Austin!" and threw her arms around him. And I stood there and bawled like a baby, watching these two young people, so obviously in love, embracing one another. I totally intruded on a private moment, I'm positive, but Austin and Christi will never know what they did for me that day. They helped me realize one more dream for my sweet baby girl was absolutely possible. And so, to run across this article, to catch up on their lives, even though they don't know me from anyone else, makes me feel like I'm catching up with an old friend... and I'm so thankful they are happy, doing well, and living their dream.

Alex and Alexis met in elementary school where they were classmates. They had an instant connection, but when Alex's family moved away the two lost touch. Then in high school, Alex was featured in a newspaper article. Alexis' mother saw it and encouraged her to call Alex and invite him to prom. And the rest, as they say, is history. On April 26, 2008 the couple was married. You can read more about Alex and Alexis' love story here.

Heather and Tyler are another beautiful couple with Down syndrome who know the meaning of love and of the phrase "in sickness and in health". Tyler and Heather met at a Special Olympics event and hit it off right away. When Tyler fell ill in 2010 with pneumonia, Heather never left his side. Their parents realized then how committed they were to each other and promised them a wedding once he recovered. And that's exactly what they did. We wish them a lifetime of happiness!

I've mentioned Bernadette Resha in a previous post about her many accomplishments, but she's also known for her marriage to Josh. The couple first met when Josh was 2 and Bernadette was 5, and they were the first couple with Down syndrome to marry in Tennessee. I had a chance to attend their wedding but was out of town and couldn't make it. I heard it was beautiful though. You can see some images here. Sadly, due to circumstances beyond their control, Josh and Bernadette are no longer married, though I have heard they remain friends.

Another high profile wedding was that of Carrie Bergeron and Sujeet Desai. They were engaged shortly before the NDSC conference in 2006 in Atlanta. I happened to be there when Carrie arrived. She came down the escalator where 5 or 6 of her friends were standing there talking, and when they saw Carrie they all shrieked in excitement. "Let us SEE!" They all said. Of course they wanted to see Carrie's engagement ring, and like any newly engaged young woman, she showed it off with all the excitement in the world. She was glowing! Later, before one of the conferences where she and Sujeet would both be speaking, I heard her tell him that she had laid his clothes out for him on the bed and he better go get ready. He smirked at her and said, "Yes, Dear." :) Time Magazine covered their wedding (they had 2... a traditional one and a Hindu ceremony) and wrote a fabulous article about the accomplished couple. Be sure to check it out!

These are only a few stories out of many, many couples with Down syndrome all over the world who are forming relationships, falling in love, and getting married every year. As the years go on, that number will increase, and hopefully my girls will be included in that statistic if they so choose... I may or may not already have great husbands picked out for both of them! ;o)

Kennedy Update (Part 2)

OK so today was very long! I was waiting for 8:00 this morning so Kennedy's ped's office would open and I could make her an appointment. However, they called me at 7:45 and said they already had an appointment for her at 9:00. Easy enough!

When we got in there, her ped pushed around on her tummy and Kenn didn't seem to be in a lot of pain so he wasn't real sure what to think. He decided to go ahead and do an ultrasound of her tummy and repeat her blood work to see what it said, however, the u/s had to be done after fasting so they couldn't do it until the late afternoon because she ate breakfast, of course. So we headed home with strict instructions not to feed her or give her anything to drink. I monitored her blood sugar closely and my mom and I tried to keep her occupied until it was time to go. It was a fun day.

At 3:30 we went into the u/s where they asked me if her bladder was full. I said, "Ummm no... I was told no food or drink." And they said "Well the food part was correct, but she has to have a full bladder for the pelvic portion of the u/s." Lovely. I just deprived her of liquids all day for nothing. @@ So they did the first part of the u/s while she guzzled down water and then they did the pelvic part. After it was over they told me the results would be back to her ped in 3 business days. I said, "What?!" I explained they were trying to rule out appendicitis and said that might be a little long to wait. She said that's just how long it takes and I said ok, left to go to the lab for her blood work and called her ped. They said they would call me back.

After we were done with her blood work I got a call back from her ped's office and a nurse told me that her u/s was normal. I asked if it was truly normal or if they just couldn't see her appendix like on the CT and therefore was inconclusive... she said she didn't know, I would have to talk to her ped. I then asked if it WAS really normal, then what? Why were her counts so high? Obviously something is going on... She couldn't answer that either and said I would need to talk to her ped tomorrow. He'd already gone home for the day.

So, we don't have results for today's blood work, and we still don't know what's going on with her stomach, but for now I'm going to say it's NOT appendicitis. And that's good news! Tomorrow she goes for her check up with oncology, so maybe they'll have some ideas. Or not...