This Illness Just Won't Go AWAY

We all continue to have our bad times. Today, it is Daddy and Rebekah who are throwing up, Daddy and Sarah who have a mild fever and all of us who are cranky and tired.

Rebekah threw up this morning in her bed. What a mess! Then, she was scheduled for Physical Therapy, so we packed up and headed into town for that. On our way in, she started throwing up again. I called and cancelled her therapy, and we turned around and went home. That is two weeks in a row that we have had to cancel Occupational Therapy or Physical Therapy. I would like to get it going, so that we can get into a new routine. These bugs just aren't letting it happen.

I called the Pediatric Surgeon's office about Rebekah's rash. We emailed some pictures of the infection and the doctor took a look and decided to put her on a different antibiotic (augmentin). We got that called in yesterday, picked up and started last night. Hopefully this will take care of it. We are now into day 14 of antibiotics of one form or another. With that, her stools are pretty soft and she has a sore bottom. It hasn't gotten too out of hand, and I'm doing my best not to let it.

Please pray that we ALL get to feeling better soon. This is just dragging on TOO long and we are all tired of it.

Craziness Continues

It continues to be pretty crazy around here.

Rebekah's infection seems to be a little better, but it isn't gone. She is still on the antibiotic, but only for another day or so. What should we do about that?

Sarah continues to feel better, but then this morning she was throwing up again. Ugh! It was only once and she has kept breakfast down. What is that about?

Sunday, Daddy was working in the yard (putting in more grass) and felt fine afterward. Monday morning, he went to do just a little more and did something to his back (wish we knew what) and pretty much went to bed. Any time he moved, it hurt. Since it hadn't improved by the next morning (yesterday) he wanted to go to a chiropractor (a new experience for him) and see if it could be fixed. He got a referral from a friend, made the call and got an appointment. Mommy wouldn't let him drive himself, so we all packed up and headed in. He felt better afterward, but still isn't feeling great.

Mommy still has bouts of nausea and is just plain worn out. We are all "getting by". No one is sleeping well and we all seem a little more cranky than normal.

It was a warm day yesterday, so we all got to go outside and play a little. Sarah kept wanting into the swing, but as soon as she started swinging she wanted out of the swing. Rebekah enjoyed swinging, climbing and sliding. Both girls liked to sit at the little table that is part of the play structure. Then we took a walk, looking at the trees that Daddy planted a month or so ago.

Crazy Days

It has been kind of crazy around here the last few days.

Sarah had one bad day of throwing up and then threw up a little during breakfast Friday morning, but has been good since then. She seems to be getting mostly back to normal.

Rebekah's G-Tube site continues to be infected, but it isn't getting much worse.

Both girls have been out of sorts off and on throughout the days.

Saturday morning (4:30 or so), Rebekah woke up screaming and needed a diaper change. I (Mommy) went in to check on her and found myself really sick to my stomach and woke Daddy up to change the diaper. I just couldn't stand up. I spent the entire day with diarrhea and nausea/vomiting. Couldn't eat anything, without it coming back up. Called Grandma A to see if she could come and help. She was already committed to helping with her grandsons (one seemed to have an ear infection) for at least the morning, but she would call and come out after that. I struggled through and managed to get both girls to take a nap, so I could lie down. Grandma A came mid afternoon and I pretty much went to bed and stayed there until this morning. Grandma A and Daddy took care of the girls and I just tried to feel better.

This morning, the nausea seems to be better, but we'll have to see how the day goes.

And yesterday was Daddy's birthday, so much for having a good day. I hope he knows how much we all love him, even if we didn't show it to him yesterday.

Evening Update

Mommy took Rebekah to the oncology clinic today so that they could look at her g-tube site and infection once again, since it was getting worse. They had spoken with the surgeon's office (who had put in the g-tube) and they wanted oncology to look at the sight and also to check the volume of fluid in the g-tube balloon. The volume was good and oncology couldn't tell anything specific from looking at it. So, someone from the surgeon's office came down to look at it. As she looked at it, it didn't look "roaring" so she wasn't ready to switch the antibiotic, at least not yet. The change could be from a reaction to the topical cream that we were applying, so we stopped that. If it gets worse, we need to call the surgeon's office. If it hasn't improved by next week, we should schedule an appointment at the surgeon's office. She has not been running a fever, so I haven't been overly worried about it, but I don't want it to get out of hand. So now we have three doctors to call depending on the circumstance - pediatrician, oncology or surgeon.

We took Sarah with us and let me tell you how much fun it is to be driving down the freeway and have her throwing up in the back seat with nothing I could do for her. Once we got to oncology, I made sure to mention that Sarah was sick and probably contagious, so they took us into a special room that vents to the outdoors (instead of back into the hospital air system). We took some of our own toys so that the girls wouldn't infect a bunch of clinic toys. I really didn't want to cause any harm to any kids whose immune system might be "nothing". Gage was probably still in the hospital, but I didn't want to get anywhere near him since his counts are low. Would have loved to visit with him and his mom, but definitely didn't want to give them what any of us have.

Sarah has continued to throw up most of the day - the last time was around 4 pm. She has wanted to eat, but anytime she eats it all comes right back up, so I haven't let her eat much. The pediatrician's advice nurse said to give her only clear liquids for the first 24 hours and start with very small amounts and if she throws up let her stomach rest for at least a half hour before giving her anything else. She's not been a happy camper. I was able to give her a little benadryl and tylenol and it has stayed down, so hopefully that will help her. I sure hope that tomorrow is better and she can eat a little and keep it down. The pediatrician's office said to expect it to last 3 or 4 days and she might be better one day and relapse again the next day. Ugh!

Rebekah continues to complain about her tummy hurting and pointing to her g-tube. She doesn't want it looked at or touched, but she did want owie medicine on it tonight (so I put a little vaseline on it, which the surgeon's office had said would be ok). She has definitely been out of sorts.

It has been a rough day, but it could be worse. We are home (and not in the hospital) and I have been able to care for them without too much problem. Daddy has been able to work. It hasn't been easy, but we have survived the day. Tomorrow is another day. One day at a time, one hour at a time, one minute at a time... That is all we can do.

Another Rough Night

I guess we have pretended that things were going to be fine for this weekend for long enough. Rebekah's infection on her tummy is getting worse. I won't give you the details but it is pretty gross. We may very well be heading back to the hospital with her and mommy is worried about being admitted

Sarah woke up this morning crying and when daddy went in to see her her tummy and throat were making "noises". VERY quickly thereafter you can imagine what came next. Doc's office says Sarah can expect this for 3 more days.

Ugh.

All of this said, last evening was Great. Friend LaDonna and all of her kiddos came over and watched the girls so mommy and daddy could go out to eat for dinner and do some shopping for camping...oh well. Dinner was GREAT just the two of us. Amazing how wonderful a simple dinner can be. Hopefully LaDonna's kids don't get infected by Sarah. We SO thought everything was getting better.

Thank you all so much for the wonderful comments. They have been real helpful.

Antibiotics, Lots of Comments

We all seem to be doing a bit better. Both girls actually slept pretty much through the night last night. I put them to bed about 7:30 (a half hour later than normal) and they both went out. Typically, Rebekah plays the "I need a change", "I want a drink of water", "I want some owie medicine", etc... game. Not last night, though. I kept waiting for one or the other of them to need attention, but it didn't happen. Before I went to bed, I added more Pediasure to Rebekah's pump bag and then again at about 4 am. She actually got her 5 cans yesterday (and overnight) without throwing up. Hooray! She didn't even stir when I added more Pediasure. She must have been a tired girl.

Sarah woke up about 5:30 and fussed. I waited to see if she would put herself back to sleep and she did, so I didn't even have to go in and help her. I had a hard time sleeping, but that happens.

Monday night, I was a little concerned about how Rebekah's G-Tube site looked. It had changed and I wasn't sure if I was seeing infection or something else, but thought I should keep a close eye on it. Tuesday morning, when I looked at it again, it was looking infected, so I called the Oncology clinic (as soon as they opened) to see if they wanted to look at it or have her PCP look at it. I left a message for the nurse, she called back and left a message for me, I called back and finally got to talk to her. She was going to check with the doctor and see what she thought and get back to me. Finally, about 1:30 the nurse called back and suggested that we come in about 3:30. Since it didn't seem to be a critical/time sensitive matter, I didn't worry too much about the time delays. Critical calls need to come first.

We met the new doctor and she seems to be great. She agreed that it looked infected, so she gave me a prescription for nystatin ointment to put on the area 3 times a day and a different antibiotic that will tackle "skin" infections. So we stopped the Amoxicillin and started the new one. Then when the new one is done (10 days), we may finish the Amoxicillin. All the fun and games... Meanwhile, we wonder if the antibiotics are going to cause diarrhea and if we will have that "joy" to deal with, too.

I have to tell you all a funny story. This morning at breakfast, Sarah was sitting in her high chair and threw her sippy cup on the floor. I picked it up and gave it back to her. She threw it on the floor and started saying and signing "no no no no". We have been telling her for a long time, not to throw her cup on the floor and Rebekah will say and sign "no no no no" to her when she does it.

Rebekah is so finicky about how things are - an open door has to be closed, things have to be done in certain orders and the night time routine has to be consistent and complete. If Mommy starts to leave and we haven't said prayers, she makes sure that we do. Last night, she wanted "more" prayers, so we prayed that she would fall asleep quickly and have a good rest. She did fall asleep quickly and seemed to have a good rest. Some times, I think she is smarter than we give her credit. What a blessing!

It was great to see so many comments this morning and throughout the day. Last night, I was kind of down not wanting to post because I didn't know if anyone even cared and I've been so drained from being sick and caring for sick kids. So to see so many comments and lots of new visitors, brightened my day. Thank you! Please come back and visit and comment again. Some days, that is the only way I feel cared about.

Continuing to be Sick

We continue to be a house full of sick people. We are all not feeling well - coughing, sneezing, runny noses, sore throats, nausea and vomiting, difficulty sleeping, etc... It has NOT been fun.

Saturday, I took both girls to the doctor. No Ear Infections. Rebekah seems to have Sinusitis, which I guess is to be expected with the radiation she received to her nasal passages. So she is now on Amoxicillin for that. Sarah's just seems to be typical winter virus.

Mommy and Daddy have no energy. It is tough to just try to keep up with the girls and the minimum that needs done. Daddy's computer problems have put him behind and not feeling well, is just making matters worse.

Mommy took Rebekah to speech therapy today along with Sarah. Rebekah seemed to do pretty well. She was working on two word sentences.

While we were out, we saw Maggie's Aunt Kimmy and Maggie's sister Angelina and Maggie's cousin. We chatted for a few minutes. They seem to be doing well. According to Maggie's page, the family is working to help fight against childhood cancer. Please continue to keep her family in your prayers.

Rebekah's hair is starting to grow in. We are seeing a little fuzz on her head. Her right eyebrow and eyelash are coming in and her left eye as a few lashes. It is kind of exciting to see, but yet a little scary as it can be a very visible look at where the radiation has greatly affected her.

A Rough Night and Rough Morning

As I went to bed last night, my throat was hurting much more than it had been. I just hoped a good night's sleep would help it. At 11:30 pm, Sarah started fussing. I checked on her, zipped her jammies back up, got her a binky (actually 2 binkies), turned her music back on and covered her up with the blanket. She seemed to settle down. Over the next 3 hours, she continued to fuss periodically and was given decongestant, tylenol, teething tablets and gas drops all to try and help. Finally, about 2:30 am, I put some bedtime lotion on her hands and face and she seemed to settle down for the night. Ok, so that meant I could get 4 or 4 and a half hours of sleep.

Then again, maybe not... Rebekah woke up about 4:45 rather upset. She wanted her tummy drinks stopped, a new diaper and just to scream... I gave her some tylenol and spent the next hour and a half changing her diaper a few more times, getting her cold water and trying to get her back to sleep. By then Sarah was starting to make noise again, so I got her binkies back and layed her back down. It didn't last long and she was fussing again and it didn't sound like she would go back to sleep on her own. I went in to check on her and she was telling me she needed a diaper change, so I figured I would change the diaper and then lay her back down. No such luck, she wanted to eat. By now, it was 7 am and her normal waking hour, so time to get up.

After breakfast, I layed her back down (Mom can always hope, right?). She was making noises now and then, but not screaming. Rebekah woke up, Daddy got her up and she wanted to check on Sarah. Sarah only had one of the two binkies, so Rebekah got her the second one and then Rebekah came and crawled into bed with Mommy and Daddy. She doesn't lay still for long and she wanted up and wanted her tummy drinks, so we headed out to the living room to get her hooked up and watch some TV. Sarah wasn't happy, so I got her up and into the playroom. By then Rebekah was ready to be done with her tummy drinks, so we stopped them and sent her into the playroom. By now, both girls are screaming. It is clear that they are not feeling well. I'm not exactly sure what each of them is fighting, but they are definitely not feeling well.

About 9:30, Rebekah wants to lay down on the couch with a blanket, so I help her with that. Then Sarah tells me she wants to go night night, so I take her into her room and lay her down. Rebekah is feeling pretty warm, so I get the thermometer - 100.6. By the time I get her some Tylenol and some Benadryl (to help with the runny nose and the crabbies), she feels even warmer, so I check it again 101.4. I give her the Tylenol and Benadryl (which she wants in her tubes and not in her mouth, which is unusual) and then she proceeds to throw them up. Ugh! I get my shirt changed and her clothes off and she refuses to have any more clothes put on. She is sitting in her bed shivering and won't let me put any clothes on... I finally talk her into a shirt and then she wants a blanket on her lap and one over her shoulders. I check her temperature again and it is 101.7.

So I figure it is time to call the doctor. I call the answering service and have the oncologist on call paged. I don't really know that the oncologist will be overly concerned, since she no longer has her central line (and the big risk for infection), but figure I'll start there. She calls me back and explains that her biggest concerns would be ear infection or sinusitis and that we might want to have her seen, but she didn't think it warranted an ER trip (at least not yet). If her temperature got above 102 or 103, she wanted another call. Otherwise we could treat her like a typical pediatric cold patient - she could have tylenol, motrin, cold medicine, etc... And if we need to, we can use suppositories for nausea or for fever. It might make some sense to call her pediatrician's office and see if they can look at her ears.

So I called the pediatrician's office and we have an appointment scheduled for 4 this afternoon. They were being slammed with patients and that was the earliest appointment they had available. I was able to get Rebekah to rest for a little while and afterwards, I was able to get some Tylenol, Septra (her antibiotic) and Benadryl into her.

Now, Rebekah is laying on the couch in the playroom and Sarah is playing. They seem to be leaving each other alone right now, which is good. Sarah, however, took her jammies off (but kept the diaper on), so I got her dressed for the day.

Grandma M will come over in a little while with some lunch and help with the girls. Maybe I can get a little rest and a nice long shower to help me feel better...

Now we are back to two girls screaming and unhappy. Ugh! Mommy just doesn't have much patience for that today, but I guess I have to buck up and deal (just like any other day).

Life Continues

Rebekah continues to enjoy life. She plays with her sister, watches Dora, loves being read to, pretends with her makeup and doctor kits, dresses up, loves being tickled and hugged and kissed, enjoys school and being looked up to by her sister. She enjoys giving her sister hugs and kisses and tickles and helping her sister eat (whether that means giving Sarah some of her own food or telling Mommy that Sarah needs more or getting Sarah’s cup from the fridge and giving it to her).

If one of them needs a diaper change, they both have to come and they will walk hand in hand down the hall to the bedrooms. They will get a diaper out for each other and they’ve started wanting a wipe to wipe their hands when getting a diaper change. If one has a wipe, the other needs one. It can be really neat to see them getting along so well.

At other times, they fight and want the toy that the other one has and hit and push and generally be mean to the other. I guess that comes with the territory.

We are making some progress, but in other ways we seem to be taking steps backward. Rebekah’s medications are down to Claritin daily, Septra (an antibiotic that she gets because her immune system still isn’t where it needs to be) twice a day 3 days a week, and Tylenol when she needs it. We’ve dropped the Prilosec, Morphine and Zofran.

She can go days without throwing up and then all of a sudden she might get sick to her stomach. Lately, she hasn’t gotten much of her nutrition in during the day with the bolus feeds as we have been on the go so much. Yesterday, when she got a bolus feed, she threw up. Today, she didn’t want any bolus feeds, so we used the pump and she did ok with it. It feels like a huge step backward. Today we did get more nutrition in during the day than we have in a while (even if it was using the pump). When will it end?

She continues to eat some bites - some days more than others. We encourage her to eat, but don’t push.

We have approval from health insurance for Physical Therapy and Occupational Therapy sessions, so we’ll start those next week with OT and then PT the following week and then continue to alternate weeks. She has a long way to go with OT, PT and Speech.

I have held off on potty training the girls, since we will be away for a few days coming up. Tonight, however, during the girls’ bath, Rebekah was insistent that she needed out of the tub and onto the potty. I quickly put her seat onto the potty, her stool in front of the potty and her out of the tub and sitting down on the potty. She hadn’t been there long when I started hearing tinkles and she started saying all done and flushed and wanted up. Maybe I should be trying to train her now anyway…

I have been feeling under the weather – achy, nauseous, crabby. I’m hoping it will go away soon. Somehow, a Mommy’s job doesn’t stop when she doesn’t feel well.

Daddy has been dealing with computer issues, so it has not been a real fun week.

Please keep Oliver in your prayers. Also, Madeleine and her family could use some prayers, too.

Rebekah Is A Sparrow

I sing because I'm happy, I sing because I'm free.

For His eye is on the sparrow and I know He watches me... (Thank You Jodi)

This is the entire student body at Yamhill/Carlton High School. YC is a small high school in another country town about 30 miles south of us. This was taken at their assembly today where they "adopted" Rebekah as a Sparrow through Sparrow Clubs. There will be a lot more in the future about Sparrow Clubs but basically it is an organization that helps put students, corporate sponsors and families in medical crisis together. The corporate sponsors put up funds, the students "earn" the funds through community service and the families (sparrows) benefit from the funds.

We received a phone call from the director of Sparrow Clubs last week. He had seen Rebekah's web site and wanted to talk to us about becoming a Sparrow. Last week we completed their application process, had it signed by our doctors and got it off to them. Monday when we were still over in Sunriver (very close to their offices) we met with their staff. And then today, Wednesday, Yamhill/Carlton High School had their opening assembly to learn about Sparrow Clubs and to introduce them to Rebekah.

During the assembly Rebekah ran around free throughout the gym. She was enjoying herself more than anyone could imagine. She LOVES people and there were LOTS and LOTS of them for her to enjoy being around. She played ball with many of them. She handed out her cards. She shook many many hands. And most of all, Rebekah said "Thank You" more times to more people than she has ever had a chance to before. Some of the kids brought Rebekah ballons and some of them, below, stayed after the assembly into their lunch time and played with Rebekah (and Sarah) for nearly 45 minutes.

Again, there will be more on Sparrow Clubs and the students at YC as time goes on. But for now, welcome all of our new friends at YC as readers of the blog and PLEASE comment and tell us where you are from!

At Home

This will be a quick update. We made it home last night. By the time we got the girls fed and to bed, the van unloaded, trash down to the curb and were ready for bed, neither of us felt like putting up and update.

Today has not been the best of days. We had to take our cat to the vet and they put him to sleep. He wasn't doing well. We asked the vet to do some testing to see what he had. We wanted to make sure that he didn't have cancer. It turns out he was in kidney failure. Our other cat probably had the same problem a few months back and didn't make it either. Not exactly what we wanted, but a fact of life. Both cats were getting old, so it was to be expected at some point.

While Rebekah was having a snack today, she pushed her chair over and fell into the half wall. I felt terrible. She has some scratches on her head, but otherwise seems to be doing just fine.

The girls have had lots of play time and got to share a bath. I asked them both if they wanted to play or have a bath and they both indicated that they wanted a bath. When I told them it was time to get out of the bath, they both objected. Bath time has become fun again, which is great! For the longest time, I had to find time to give Sarah a bath while Rebekah was sleeping (which was becoming more and more difficult) so that Rebekah wouldn't want a bath, too.

Please continue to pray for Oliver and his family. He received his transplant today.

Monday and Packing

It is Monday morning and we are trying to pack and get out.  Always hectic as anyone who travels with kids knows.

First and foremost we want to thank the Dunhams AGAIN for giving us such a nice retreat.  Saturday was nothing but relaxing and a walk in the snow.  Sunday we were able to go see some of Frances’ relatives we don’t get to see often enough and have a small family birthday party for one of them.  When we got back on Sunday Daddy replaced a bunch of light bulbs that were burnt out around the “Cabin;”  we have to at least feel like we are doing something to help while we are here!

The girls are doing wonderful although Rebekah has been complaining a lot more the last couple of days of “owies” in her mouth.  Not sure what that is about but Tylenol is taking care of it which is good.  Sarah is picking up so many of Rebekah’s habits (good and bad) and that is cute to see.

Finally thank you all for your comments and support on the learning issues.  Of course you are all right on and we know that.  The problem, always, is absorbing that and accepting it.  In quite a few ways we feel like we did at her initial diagnosis with fear, frustrations, anger etc.  We do KNOW that God is faithful and whatever His will is will be done and He will provide us the strength to get through it but it is still difficult.

Pray for safe travel as head home late this afternoon.

Not The End Of The cancer Experience...

Caution – long and difficult.  Please read in conjunction with the previous post about Sunriver to understand the “ying and the yang” of life right now.

“The end of treatment is to be celebrated for a childhood cancer patient, but it is not the end of the cancer experience.  In fact, many effects do not appear until long after treatment has ended.”  Taken from Educating the Child with cancer by Nancy Keen and the Candlelighters Childhood cancer Foundation.

This quote is a summary of where I have been this past week.  On top of all of the research from many sources, we were at a seminar/support meeting on Wednesday evening regarding the developmental issues your child will face as they grow up post-cancer.  The seminar itself was not exactly on point for us but it was one more piece in the information I have been trying to absorb this week.  

Obviously I take a particular interest in the legal side of things including what accommodations are required, what protections exist under Federal and State laws etc.  That part is not hard for me to understand.  What is more difficult, however, is learning the practical side of what Rebekah is facing in the next 15 years or so.  This whole process has to be taken one step at a time.  There is no way we could have absorbed these long term effects at the beginning of our treatment.  There is no way we could have absorbed them during the radiation.  And there is no way that we wanted to squelch our joy at the end of Rebekah’s treatment.  

Even though would could not have dealt with it before now, it is extremely frustrating that we did not know and were never really told anything more than “She could have some developmental issues.”  Nor were we told that it is something we should look into; that is what makes me really angry.  Given the drugs Rebekah has received and her radiation dosages to her head, the research out there tells us that “could” is not really the appropriate word.  “Will” is much more appropriate.

As any parent would, we have been and still are focused on Rebekah’s survival.  As we look toward the long term we had been thinking about the scans, the long term survivability rates and the surgeries that she is up against.  It is only now that we are having to add to this the cognitive and developmental delays and the special needs that are imminent.  There are some very promising programs and therapies out there to help with some of these issues but they are most definitely not covered by insurance.  And even more so, the time necessary to have her partake in these is immense.  I do not know how to describe feelings right now except to say that I feel “hit” all over again.

Because of Rebekah’s CP and other neurological issues pre-cancer we had just began familiarizing ourselves with the Special Education services that are out there.  We have been very lucky to have a great Educational Service District and had not run into any difficulties in our brief start with them.  What I am learning now, however, is that our introduction to them was just that, an introduction to an entire “educational career” of needs and accommodations.  

No, we have not lost hope.  We serve an awesome God who has miraculously carried us this far.  But we are starting to feel like the rug has been taken out from under our feet again.  I am really really glad to have had this weekend away to absorb this.  It was unplanned (by us) but very much needed.  I cannot believe that we had even started to question the ability to return to “normal.”

Sunriver - Again (updated)

We are back in God's promised land. It is SO beautiful. As a last minute thing yesterday we decided that we would try and get away for the weekend. Daddy has to be in Court over here on Monday and so we called Debbie and asked if the house might by chance be available and it was! There is about 6 inches of snow on the ground here and all the roads in Sunriver are snow covered.

The drive over consisted of about 30 miles or so of the highway that were snow packed/ice covered roads with lots of people sliding around and all two wheel drive cars has to be in chains as were most of the trucks. Mommy's van did quite well and it was uneventful.

We stopped at Izzy's in Bend for dinner and actually had a family dinner out at a restaurant. Both girls ate well and behaved. It was really weird to find something else that we almost felt like a normal family again. Some "brilliant" lady referred to Rebekah as a "he" and we politely corrected her; then she asked "What did you do to her hair?" We both just let it go...

Daddy has not been posting this week (or reading anything); kind of a break. There is a lot pent up and maybe, just maybe I will write something intriguing this weekend.

For now we are tired from a long drive over and just want to relax. Good night.

Saturday Morning, March 11th. Up early and enjoying the quiet and beauty. The weather is very cold (10 degrees) and coffee exceptionally tasty. This is what I mean by God's promised land:

I know we have said it many times but honestly we cannot ever say it enough. Thank You to all of you who have helped us survive this last year. Obviously we cannot sit here and not be thankful to so many that we never will be able to list them all.

And I know we have said this before (See this Post from last time we were here), but as I read through the guest book at the Dunham's home here and think about what they have done for us the last year I am brought to tears at how wonderful these people are. They have been angels to SO SO many people.

Last time we were here was the week before Thanksgiving. Maybe this is just another THANKS GIVING weekend.

Sat 1:10 in the Afternoon. A quick walk/sled in the snow:

Sorry the phone camera doesn't do to well in the bright snow and I forgot to grab the real camera.

Rebekah did Great at the Dentist

It was an interesting morning. The phone rang at 7:30 and both Scott and I looked at each other trying to figure out who might be calling us at that hour. It was the dental office. The hygenist was having some difficulty getting into work and so they were calling her appointments. Since our appointment wasn't until 10:30, we didn't want to just cancel it. They agreed to call us back in an hour or so to let us know if they would be able to keep the appointment.

For those of you who don't live in the area, we woke up to snow on the ground, near freezing temperatures and more rain/snow mix expected. Most schools were either delayed or closed. They don't salt the roads here, so a small amount of snow can shut everything down.

At 8:15 the dental office called back and said it looked like it should work out fine, the hygenist expected to be in about 10.

We left a little early to head to the dentist as we didn't want to be late and weren't sure how bad the weather would have things messed up. We made it in plenty of time, so we sat in the parking lot for a bit. Rebekah did a great job with the cleaning. She didn't want to lay back, but she helped with the cleaning and allowed Dr. Wilson to look. The good news is NO CAVITIES and it looks like we're doing a good job of keeping her teeth clean. That was great to hear. We have the ok to wait 6 months before coming back, unless there is a change in her medical status. We need to make sure that when we have her quarterly Panorex done that a copy is sent to the dentist, too, so that she can monitor them.

Daddy needs to be in Bend on Monday for work, so we have been debating whether to all go or just send Daddy. The Dunham's home in Sunriver is available, so we're all going to go and have a little vacation. The mountain passes may be rough with more snow, so we'll have to be cautious. A big thank you again to the Dunham's for all they do for us - like providing this vacation.

Because of the trip, I decided to hold off on potty training. It can wait for another day...

Rebekah's diaper rash is getting better, but still needs some help. Tonight, after going to bed, she decided that she wanted to take her jammies and her diaper off. Ugh! Then she needed a new diaper, jammies put back on and bedding changed. Oh boy!

Sarah Wants to be Just Like Her Sister

There are so many ways that Sarah tries to be like her big sister - some of the ways are good and some of the ways not so good. The good ones we will encourage, the bad ones we will try to stop.

While we are eating, Rebekah will put the wrong end of the silverware into her mouth and clench her teeth to hold it there. Sarah does the same thing. Rebekah gets a diaper out for Sarah's diaper changes and now Sarah wants to get a diaper for Rebekah's diaper change. Rebekah lays down on the couch and wants a blanket on her, so does Sarah.

Rebekah stands at the sink to brush her teeth and tonight Sarah moved the stool over to the sink and climbed up on it. Rebekah joined her on the stool, but it just wasn't big enough for both of them - Sarah ended up pushing her off. I brought Sarah's potty, which doubles as a stool, over to the sink so Sarah could stand on the potty and Rebekah could have the stool. Mom brushed Sarah's teeth and gave her some flouride drops. Then Sarah wanted to stand at the sink and brush her own teeth. She watched her sister, rinse her brush and then brush some more, so she kept wanting to rinse her toothbrush, too. Only she couldn't quite reach to get it under the water. She must have stood there brushing for 10 minutes while we got Rebekah her nighttime medications and Mommy brushed Rebekah's teeth and then got Rebekah her flouride. This was one of those times that it was really nice to see Sarah wanting to be just like her sister.

I hope that Rebekah will cooperate with potty training and Sarah will cooperate because she wants to be like her big sister. I plan (at least at this point) to try to start that Thursday after we come home from Rebekah's Dental appointment. We don't have much planned for Friday, Saturday or Sunday, so it gives me a few days to focus on potty training. Wish us luck and pray for girl's cooperation and Mom's and Dad's sanity. Mind you, I don't expect that they will be potty trained by Monday, but I can always hope, right?

Speaking of potty training... Sarah and Rebekah were playing in the playroom and Rebekah got Mommy's attention. Sarah had taken her pants off, unsnapped her onesie, taken her diaper off and peed on the carpet. Ugh! At least both girls say that Sarah did it all herself. How much can you trust a 4 year old and a 1 year old. I took Sarah in and sat her on the potty. She did not want anything to do with it. A little later, Daddy asked Rebekah where her potty was. She pointed to the little potty and Sarah went right over and sat on it then got up and Rebekah sat on it and they went back and forth for a few minutes - both fully clothed. Was Sarah trying to be like her big sister then, too?

They had another bath together. The girls splashed and had lots of fun. We have a little plastic plant waterer that they love to pour. Mommy was pouring from it and Sarah had both hands up trying to "catch" the water and Rebekah was trying to "catch" water too. Then Rebekah lifted her foot up to get the water poured on it and Sarah imitated her. It is really nice to see them enjoying baths.

Rebekah's diaper rash is still pretty bad. I'm trying to keep her as dry as possible and covered with cream. It doesn't seem to be hurting her too much, but it looks bad.

It has been nice to have some seemingly "normal" type days. Rebekah seems to be enjoying school and Speech Therapy. Hopefully she will do well at her Dental appointment on Thursday for a cleaning. Meanwhile, we still have her tube feeds.

Please pray for Oliver and his family. They are in the hospital preparing for his transplant.

Rebekah Gets a Bath

It has been a busy, social weekend.

Friday night, friends Jeff and Teresa (and their kids) brought dinner out to us. We enjoyed the company and had a wonderful meal. It was very thoughtful. We had time to sit and have some friendly conversation and that was great. It has been a while, since we've been able to do that.

Saturday, we did some work around the house (inside and out). We called our friend Rae and asked if she might be able to help us change out Rebekah's G-Tube, so that we could get a good "lesson" on doing it. It really needed changed and Rae has changed a lot of them. It worked out and Rebekah did a GREAT job helping with it. Thanks Rae for your help!

We put both girls into the bathtub together. In the last 11 months, Rebekah has been in the bathtub twice. With her central line, it had to be well protected so that it didn't get wet (saran and more tape, which always irritated her skin) and then her dressing had to be changed afterward (which she detested). Now that her central line is out, she can go back into the tub. She is ok to be in the tub with the G-Tube. The girls seemed to enjoy the bath. Sarah would do anything Rebekah was doing. If Rebekah splashed, Sarah splashed. If Rebekah kicked, Sarah kicked. Rebekah poured, Sarah poured. Sarah is always trying to imitate her big sister.

Then in the evening, we headed to Grandpa and Grandma C's for dinner and it was delicious. We got to see Cousin Jacob and Cousin Michael and Aunt TT and Uncle Mark. The four kids enjoyed playing together. After dinner, all the kids got fresh diapers and into jammies and we headed for our homes. Grandpa and Grandma C gave us Grandma C's old car, so we have one that gets better gas mileage for running around. Thanks, so much Grandma C and Grandpa.

Today, Daddy's Fire Department was having a Pancake Breakfast. Daddy was up early and off to help with that. Grandma A came to the house about 11 and she, Mommy, Rebekah and Sarah headed to the Pancake Breakfast (we called it brunch). Rebekah didn't want to sit and eat, but was happy walking around with Daddy and being social. Sarah ate just about everything on her "child's plate" - eggs, sausage, and a pancake. She loved the strawberries for the top. Grandma A came back to the house with us (the girls) and watched the girls (the little ones) so Mommy could rest a bit.

Tonight Grandma M brought out some dinner and hung with us for a bit, played with the girls and helped get them both to bed.

Thanks to all of you who added your thoughts about potty training. We'll have to see how it goes.

Rebekah has a nasty diaper rash, fueled by some diarrhea. I'm working to get rid of it, but it hasn't happened yet. So, please pray that it heals quickly. If it doesn't start to improve, I'll need to call the doctor - I'm just not sure which one - the oncologist or the pediatrician.

Last night at dinner, Rebekah ate an entire container of Baby Yogurt. That was 120 calories or 1/2 cup worth of her nutrition. We are thankful for the good things.

Mommy and Daddy are still not feeling great. It is winter, and that will happen. I'm not sleeping too well, but not exactly sure why - some of it is girls waking me up, but there are other times when I wake up and just can't seem to fall back to sleep. Ugh! One day at a time...

Daddy joked with me this afternoon, when I started writing this post, by asking if I had enough time to finish it before I went to bed. It takes me a while to write what I want to say, especially if I'm being interrupted by kids or anyone or anything else. I started this post a little after 5 and I'm just now finishing it up at 8:40 with lots of interruptions and breaks. Guess his question had some merit. Hope you all had a great weekend!

Good to Stay at Home Today

It was nice to not have to go into the hospital today. I'm starting to feel sick, so I didn't want to do much of anything. I'm guessing that I'm catching a cold. Ugh!

Daddy was up early and working and then gone most of the day with clients. He is always working hard and long hours. And he still doesn't seem to be feeling well, either.

Tonight, we removed Bekah Bear's "tubes". When Rebekah got her first central line (which we've always called tubes), Bekah Bear got tubes, too. We thought it would be good for Bekah Bear's to go away now, too, and Rebekah agreed. It was a family affair, Rebekah wanted us all to help. We asked if she wanted Bekah Bear's tubes to go into the bin of keepsakes or in the trash. She decided the trash and put them into her diaper pail.

I want to start to potty train both girls. It should be fun! One at the late end of the spectrum and one at the early end. I've got a toilet cushion for the regular toilet for Rebekah (it has Dora on it) and a potty chair for Sarah. I have "real" underwear for the girls and stickers for bribes (although I'm not sure how well I like the bribe idea). Any advice?

Done?

This is really strange to us. It is literally the first time since the beginning of April last year that we do not have something (and LOTS of somethings) scheduled in the next week. In fact, we now have NOTHING on our medical schedule until May. We are in a foreign land and are not quite sure what to do with it.

Today was a good example of "Advocating For Your Child." Rebekah had her kidney function test. Nearly an hour of watching her kidneys function under a CT type scanner while she was under yet another general anesthetic. We had asked and asked to have her central line pulled at the end of this test while she was still under but all we could get for the last 2-3 weeks was "we just can't get the schedules to work out" or "the surgeon is not available..." That meant another general anesthetic tomorrow just to pull the line.

Well, after Rebekah went under mommy and daddy went out to the fountain area where we like to sit. While there Rebekah's surgeon walked by and daddy got his attention. We asked him whether he had a moment to talk and he commented that he had lots of time, he was "just teaching" today.... Oops. We asked "how would you like to go pull her central line?" He was concerned that it was an emergency because it was infected or something but we explained no, it would just save a trip and another general anesthetic. It made good sense to him and he took off with his interns in tow to go take care of it.

Daddy had to go to the surgeon's office and get a consent signed - the surgeon's staff were not exactly pleased with him making his own scheduling on the fly - but it made sense to the patient and he was willing to do it. We thought that was TOTALLY great and the sign of a great doctor. It never would have happened, however, without mommy and daddy advocating (pushing) for Rebekah.

Rebekah is now free of her central line (still has her g-tube in her tummy.) She is free from that infection risk, from the daily maintenance and the traumatic dressing changes. In fact she can actually take a bath -- although it will remain to be seen how well that will go over after so long without being able to.

Help us out - what do "normal" families do with their time? It is a rhetorical question. But as an exercise in thought, , please look back on what we have had to do with ours over the last 11 months and compare that to what you are doing with yours. Are all of the things that are taking up your time really priorities or should you consider making some lifestyle changes so you can focus your time differently? We ask because we know it can be done. You too, if forced to undergo what we have would be able to do it. So the big question is - should you make changes to spend more/different quality time with your family before you are "forced" to or even worse, before it's too late?