Sebastian's Make A Wish Trip to Disney

[AmberGreenawalt]

I also want to say thanks to Maroo for the BEAUTIFUL bracelets that she sent. You are amazing Mary! Thanks so much for sticking around after your trip.

I haven't had a chnace to get the photos into photobucket. Things are just crazy crazy right now. I promise I will post some photos of the bracelets and the crayon roll-ups Melissa sent when I get a chance.

I also have a TON of photos from Sebastian's send-off party. It was INCREDIBLE!!! "Lightning McQueen" was there and Santa made a special visit. It was so nice to get to celebrate with our family and friends!

 

[iu97alum]

Sending good vibes for tomorrow Amber. And hugs for you!

 

[maroo]

We took Savannah to be weighed on Friday. She is still 9 pounds 11 ounces.

After meeting a bunch of new doctors this week it was so nice to be seeing our Pediatrician again. I am always amazed by how she remembers everything from our previous appointments. What symptom started when, who was on which medication and for how long. I can’t always remember and I only have three little “patients” in my charge.

I was thinking today how we’ve been taking our kids to her for nearly three years now--ever since we moved to NC. It was really one of the first relationships I formed in this state. As my friend Ashley always says “you have to love your Pediatrician because your pretty much married to them.” Like my husband she’s definitely seen me at my worst.

At Friday’s visit I just broke down. The hospital stay with all the pumping and weighing and experimenting with new food on no sleep was really hard.

I’m doing the best that I can to keep nursing. My milk's up since the hospital which is great! Since being on the herbs and more comfortable at home I’ve been able to get three ounces from each side in the morning (after not nursing all night) so that's one six ounce bottle at least. Still, I’m trying to make my peace that the bulk of Savannah’s needed intake is going to have to come from formula.

Our Pediatrician laid out a diet for Savannah. Our goal is to get her to drink 36-40 ounces of milk a day and 6 tablespoons of food. Dr. is having us put her on “EnfaCare Lipil” a high calorie formula given to low birth weight and premature babies. It has 22 calories per each 2 ounce serving.

Our doctor explained that it is going to take a lot of momentum to get Savannah's metabolism out of what’s called a “Catabolic state” --a destructive process where the body loses muscle mass.

She showed us Savannah’s growth chart. It’s all out of whack at the moment—down in that “shaded” area at the bottom of the page. She said it’s going to be six months before we see Savannah get back onto her growth curve.

I’ve also been directly nursing Savannah a couple times a day since we got home and we have definitely noticed that she “refluxes” much more when she drinks directly from the breast without the thickening with rice cereal. That added thickness does seem to help her Esophageal Sphincter muscle hold the milk down.

But pumping ten times a day just isn’t practical for my life. Especially after Brian goes back to work on Tuesday. I have some milk frozen I can use too. I guess I will just have to see where things go. I'm not going to beat myself up about it forever.

On the plus side I think Brian is having a great time with getting to feed his baby girl. Between the two of us we have been feeding her constantly. Even still we have only been able to get her to take 16 ounces today. Baby steps…right? Baby steps.

Another strange development...Since my in-laws brought the kids to visit us at the hospital Sebastian has been talking like a baby. It's gone on for days now. He's saying a lot of "Me want..." and "Da-dee" "Ma-mee." We've tried ignoring it and giving him more attention but still it's frustating. We're trying to remember that this episode with Savannah has probably been pretty traumatic for him. Afterall he knows what hospitals are all about. When we came home he kept asking us if she was "fixed."

Monday is another big pray day. We’re headed back to the hospital for Sebastian’s Bone scan and CTs and taking Savannah to have her intake evaluated and weighed. The power of prayer is so awesome! We just know that everything is going to come back great and then we’re headed to DISNEY!!! DISNEY! DISNEY here we come!!! Five more days!!!

MARK 11:24 NKJ ~ "whatever things you ask when you pray, believe that you receive them, and you will have them."

Bless your heart!! You guys have so much on your plate right now.

I do hope that you can come to peace with using the formula. Sounds like Savannah really needs it.

Bless Sebastian, too. I can't imagine what it is like for him to walk back in that hospital and not really understand that Savannah is not sick like he was. I bet that was stressful for him. It is so hard to tell with kids. I know William gets stressed pretty easily when Lauren is in the hospital or his Dad gets low blood sugar, etc.

I am praying for all of you...still...for peace.

I also want to say thanks to Maroo for the BEAUTIFUL bracelets that she sent. You are amazing Mary! Thanks so much for sticking around after your trip.

I haven't had a chnace to get the photos into photobucket. Things are just crazy crazy right now. I promise I will post some photos of the bracelets and the crayon roll-ups Melissa sent when I get a chance.

I also have a TON of photos from Sebastian's send-off party. It was INCREDIBLE!!! "Lightning McQueen" was there and Santa made a special visit. It was so nice to get to celebrate with our family and friends!

Aww...you are so sweet. Don't worry about the pictures right now. You have so much going on! I did wonder today if you guys had gotten them yet...I hoped they would make you guys smile. And I hope they fit!

But we DO want to see pics of that party!!!! Sounds like a TOTAL blast!!

 

[kimmylaj]

definitely keeping you guys in my prayers as a matter of fact my husband just asked about your family because i told him about the baby and he told me to take his work computer (ours is broke) and check on you guys. we are definitely praying that you get all good test results tomorrow and that the day wont be too stressful. just think disney will be here really soon

 

[oklamomof4boys]

Thanks for taking the time to update us all! We will certainly keep all of you in our prayers. You certainly need this vacation away from it all!

I know what you mean about your pediatrician. Our previous one moved to town right before Nathan was born. He was also our neighbor. He was such a source of comfort. He was here for 7 years before he moved to Dallas ( his wife was also a doctor and she was going back to school to specialize in something). I cried and cried when he left. We still miss him!

Carol

 

[chcmama]

Amber-I know how tough it is to have a failure to thrive baby. I had to stop nursing my oldest at 3 mths because of it and I just had to come to terms with the fact that the high calories were more important. I had to stop nursing my son at 6 mths for the same reason. They both have Cystic Fibrosis so calories is something we always have to deal with. I think you are doing a great job looking at the positives like Daddy being able to feed her and being able to look at her face when you feed her. Hang in there I know it is tough and you will be in WDW soon!

 

[LuvGoing2Disney7]

Amber
Wanted to let you know I'm thinking about you all today and praying you get good news for both Sebastian and sweet Savannah.

I'm so sorry things have been so hard for your family lately. I'm glad you all got to be home and together for Thanksgiving.

I can't wait to see pics of Sebastian's party. I just know it was A.M.A.Z.I.N.G.!!

Give your kiddos an extra hug. I hope you can feel all the prayers being said for your family from your DIS family.

 

[tinytreasures]

prayers that she gains weight soon
it will take a while for her to get use to drinking more at a time
it took us months to get our little Ella up to 4 oz feedings (we got her at 3 months) she would only take sips in the beginning

 

[maroo]

Praying for you guys!! Just wanted to let you know...

mary

 

[jham]

I hope everything went okay at the hospital yesterday! I've been thinking about you!

 

[Adi12982]

You and your whole family are in my prayers!! I hope all went well yesterday! Keep us posted, if you can.

 

[AmberGreenawalt]

Sorry I have not posted an update. We didn't get home until after 5:30 pm yesterday and were worn out from a day at the hospital. I spent today trying to get things together for our upcoming trip (three more days!!!)

We started off having to take Sebastian up to Hemby Children's Hospital to get an IV. He is such a character. He was happy as a clam one minute and then we he saw that needle coming at him he held up his hand and gave them a firm, "NO!"

Next I took him back to get his radioactive dye injection. No needle involved here so he was fine.

After that it was time for the first bone scan. Brian kept Savannah in the waiting room while I stayed with Sebastian for the scan.

Towards the end of the scan we switched off and I took Savannah to the Nursing Mothers Center. I made it just in time for my appointment.

The great news is that Savannah now weighs 10 lbs 2 oz. I guess putting a funnel in Savannah's mouth and pouring the high calorie formula into her worked. Her intake evaluation showed that she was getting 2 ounces at a nursing session. I have also been able to get 6 ounces first thing in the morning (when good old hormone levels are nice and high.)

Bottom line is we still have to supplement to get enough food in her. The Lactation Consultant, was really supportive. She said it would be a LOT of work to try and get my milk supply up to the 40 ounces day. She suggested some drugs Reglan and Domperidone (I think they are only available in Canada!) with side effects like “depression”-- I’m just not going to do that to myself. We’re starting to get a good little groove going of alternating between bottle and breast.

While we were there, Brian took Sebastian to get his CT scans and then met us. After the appointment we went to the cafeteria to get some lunch and then went to the play room in Hemby for Sebastian to kill some time before his second bone scan (they have to let the dye settle in the fast growing areas for three hours). Sebastian was so cute playing "surgeon" in the play room. He wheeled his little "patient" around on the gurney and performed "surgery."

The second bone scan was a lot longer. It lasted about a hour and a half. Sebastian did an excellent job of staying still for such a long period of time. He really amazes me. I can fight with him till the cows come home about getting his teeth brushed or eating his broccoli but when it comes to the really important stuff, when it really counts like holding SUPER still for a LONG time he totally steps up to the plate. I was really proud of him all day! At one point he actually fell asleep. It was a bummer to wake him up so we could get some scans of his arms and feet.

We had to wait in the scan room while the Radiologist decided if he had enough imaging. Sebastian, ever resourceful made a game out of spinning some surgical tape on a stool.

After the bone scan we waited around while the Radiolist printed films for me to take home. I didn't even ask for them. I think it is funny that I've gotten a "reputation." They knew I would want to see for myself.

Next we walked over to the new Pediatric Oncology Clinic, which is right across from the hospital. Sebastian's Oncologist reviewed the radiologist's report and came in to meet us. He said the scans were fabulous! There were no recurrent or new tumors. He said the radiologist saw Sebastian has "Sinisitis" and Otitis Media"...fluid and air pockets in his sinus cavity and middle ear. Doctor took a look in Sebastian's ear and said, "That's an ugly ear." He's thinking that with the 50 days of broad spectrum antibiotics Sebastian has had that a culture needs to be done to find out exactly what kind of bug he has. He also thinks tubes will help drain the fluid. Basically another ear infection is inevitable with all that fluid just sitting there. So Sebastian has an appointment with an ENT doctor on Wednesday for this. Savannah also has a doctor's appointment Wednesday morning. (Ack! I need to pack!)

We discussed Sebastian's future with Sebastian's Oncologist and settled on only doing scans every six months for 4 more years. I'm thrilled that he won't have as much radiation!!

Thank you for your prayers! We are ready for a vacation and an ordinary 2009.

 

[mom2lilnick]

Excellent news on so many things!!! Well, on everything but the sinuses and ear infection. Hugs on the upcoming ENT appt. I am so happy about the scans being clear and the weight gain! WTG!!

 

[HeatherSue]

I'm so glad the bone scans were clear! That's GREAT! I can't believe he can lay still for so long. What a good little boy!

 

[tinytreasures]

wow great news for both kids
glad you get to cut down on scans and that your little one is growing what a great feeling

 

[oklamomof4boys]

Oh Amber, what wonderful news! Now you can go on your trip without any worry! Sebastian looks like such a little man getting his bone scan!

Now girl, exactly when are you going to pack? Of course they have washer and dryers so just throw all your "big give" outfits, some underwear, swimsuits and a few other essentials and you are good to go. You just need 2 outfits a piece and then just wash every day-lol!

Carol

 

[LuvGoing2Disney7]

Next we walked over to the new Pediatric Oncology Clinic, which is right across from the hospital. Sebastian's Oncologist reviewed the radiologist's report and came in to meet us. He said the scans were fabulous! There were no recurrent or new tumors.

Oh Amber that is the BEST news ever. I'm sitting here in tears. I'm so glad it went so well and Savannah is doing so well too. I can imagine what a long day it was.

All the pics are great. I love the playrooms the hospitals have. Makes things a bit easier on our little ones. WTG Sebastian on being such a trooper. You're such a big, brave boy.

 

[kimmylaj]

i am so glad to hear that news. sebastian is just such an inspiration. his smiling little face just makes my day. hugs to him and your whole family have a wonderful trip you deserve it. enjoy every minute

 

[AmberGreenawalt]

I feel like I’m on this cruel roller coaster ride. One day up. One day down. Here is how my day went…

I dropped Sebastian and Siennah off (late) at Preschool. It’s my week to bring in snacks and for the second day in a row I forgot. Even though right, there on the top of my daily list it says, “Preschool Snacks.” Feeling really awful and embarrassed I apologized and the teacher's assured me they would find something. I would have made a run to Target but I had to zip over to our Pediatrician for Savannah’s four month “well” visit.--At least no co-pay for that one.

Our Pediatrician, Dr. Queen read me the Lactation Consultant’s report from Monday. It was just sad. Dr. Queen started to tear up. She home school’s her kids and was telling me about how they are reading the Little House on the Prairie series right now. Apparently one of the little kids in the book series has Cystic Fibrosis. He ends up dying at three years old. She tells me that 20% of the time it just doesn’t work out for mother’s to be able to nurse their babies and what used to happen was these babies would die.

I felt really sad and thankful all at the same time. Sad to think that if I was one of those women who lived in a time where you have ten babies hoping 80% will grow up that my little Savannah would be the one who wouldn’t make it. I felt grateful for medical advances and yes even the formula I’ve so long been conditioned to think was “bad” for my baby.

The good news is that Savannah is up to 10 lbs. 5 ounces. Dr. Queen says we can take her down to a more reasonable 25-30 ounces a day and put her back on the regular 20 calorie formula.

Bad news is that her chest is back to rattling and wheezing and green snot is again pouring out of her. Dr. Queen tried calling over to Charlotte Ear, Eye, Nose and Throat to see if Dr. Clyne could see Savannah when he sees Sebastian at 2:00.

No dice. They would not let her book the appointment. Turns our Dr. Clyne is double booked as it is.

Dr. Queen told me to take Savannah with me and beg Dr. Clyne to see her. She told me to call her if Dr. Clyne won’t see her and she would put her on something else.

Dr. Queen also advised that we post pone Savannah’s vaccinations. She doesn’t think her body is strong enough to form antibodies to the vaccines.

I went to Babies R. Us and Target and picked up formula (thanks Amy for the coupons) Bibs (because Holy Cow that stuff stains!) and other random stuff that we need for our trip and then went to pick up the kids from school.

I dropped Siennah off at my in-laws and then drove back to Pineville to find the Charlotte EENT office.

I showed up early with for with my “new patient” Sebastian and explained that Dr. Queen TOLD me to bring Savannah in. I asked if I could please fill out paperwork for her just in case he will agree to see her.

Savannah had a dirty diaper and as I was in the bathroom changing her Sebastian got called back.

First a Nurse took down a litany of information and then told me that Dr. Clyne would be in shortly. She still would not tell me if Dr. Clyne would see Savannah. I promised Sebastian we could go look at Christmas Lights if he will please sit still. Savannah puked all over the floor.

Dr. Clyne came in and introduced himself. He’s a young very personable guy. We started working our way through the complicated history of Sebastian’s story. Like most Doctors I’ve talked to he has very little knowledge about Multicentric Osteoclstoma.

By now medical jargon has started to roll off the tip of my tongue and the very fact that I can correctly pronounce the names of drugs and anatomy seems to garner respect from medical folks.

I explained to Dr. Clyne what the radiology report of Sebastian’s CT scan showed and how his nasal cavity lit up like a Christmas tree during his bone scan. No such findings were present during his scans late August.

I told him about the string of ear infection’s Sebastian has had and their fast and furious onset. I listed off the antibiotics we’ve tried: 10 days Amoxicillin, 10 days Augmentin, 10 days Zithromax, 10 days Augmentin, 10 days Omnicef all within the past two months.

He examined Sebastian’s ears, nose and throat and listened to his chest. He asked me questions about his breathing and volume of his voice. I told him about the annoying throat clearing sound Sebastian makes countless times a day.

Dr. Clyne told me that Sebastian deffinetly needs tubes. He explained that the "by the book" teaching is that if a patient has been treated with three different kinds of antibiotics in the past six months and is still having ear infections…they need tubes. Sebastian has had five antibiotics in two months…he fits the bill.

Before getting to Savannah he went on to explain the whole procedure to me along with the risks involved. He explained that tubes are always placed in both ears. At Sebastian’s age he says they also take a look at the adenoids. If those need to be removed then it will be done during the same time for anesthesia purposes instead going back and putting them under again.

Then he examined Savannah who promptly spit up all over his shoes. Her fourth time since we entered the exam room. I told him about her Gastroesphogeal Reflux (which he has just witnessed) and he tells me he can feel the “junk” in her chest. He also noticed the crusted snot on her irritated nose.

I listed off the antibiotics we’ve tried for her ear infections: Amoxicillan, Augmentin, Omnicef, Rocephin via IV.

He confirms that both her ears are indeed quite infected. He says that Rocephine is the strongest stuff that we can give Savannah. If that did not work, he says, then she needs tubes. He says once these tubes are in place it’s near impossible to get an ear infection.

I am just a great big mess.

I tell Dr. Clyne that we are headed to Disney for Sebastian’s Make A Wish trip on Saturday. I ask how they will do on an airplane at 35,000 feet?

Not good is his reply. It will most likely be pretty painful for them. We’re talking ruptured eardrums. Not pretty. With the tubes he says they could go to outer space without pressure problems.

I am so crestfallen. How am I going to explain to Sebastian not being able to a) go on an airplane or that b) we need to postpone his Wish.

There have been so many times where I’ve had to say to Sebastian, “Just get through this and you will get to go to Disney”--- Through his port surgery, his scans, needle pricks and countless waiting rooms. Heck I’ve had I’ve had to say it to myself a thousand times over.

And now here we are with the paper chain down to two links and these DAMN ear infections are standing in our way.

Dr. Clyne asked me, “IF…I can work it out so that they can get these surgeries tomorrow can you do it?”

“If it means these kids can go to Disney, YES! We’ll do it!!”

I dissolve into a puddle of tears and through my arms around that man and gave him a hug.

He had me go back into the waiting room with the kids. I called Brian at work and asked if he could push his luck and take another day off work on Thursday.

Nervous energy was coursing through me. Even though it was 45 degrees out I was ROASTING in my short sleeved shirt.

I hear a bunch of phone calls and then I finally get called up to the desk.

Amy the Receptionist-Coordinator gal tells me that the surgeries have been scheduled for tomorrow at Charlotte EENT’s South Park Office. She doesn’t know what time so she says to just show up at 6:00 a.m.

My mind is racing and I start freaking out about Siennah. She has been coughing and with the huge amount of snot pouring out of her nose I’m worried she has an ear infection too. She is such a trooper that she doesn’t complain but I would HATE for her to be in pain on our trip.

I called Randolph Pediatrics and tell them I need to get Dr. Queen to see Siennah today. I knew there wasn't a chance of getting Dr. Clyne to look at them himself. I then tell Dr. Clyne what I’m doing and let them know that I will call them and let them know if Dr. Queen says Siennah needs these “miracle” tubes too.

I ask Amy if there is any way that Dr. Clyne could get another Operating Room slot. She tells me it is highly unlikely but she will try.

I called my in-laws to meet me at the Bank of America in front of the mall. A half hour later we switch kids and they take Sebastian and I get Siennah.

I took Siennah back over to Dr. Queen. It was after four and we waited a long time.

Dr. Queen came in for round two of the day. She checked Siennah’s ears and lo and behold the girl has a puss filled ear infection!

So Dr. Queen tells me to call back to Charlotte EENT right away. I fished the card out of my bag, called and got put on hold. Apparently Amy is on the other line with CMC Pineville Hospital trying to get Siennah a slot.

No dice.

Amy tells me that there just is not room. There are 30 surgeries scheduled in 4 Operating Rooms and they had to pull every string they could to get the two slots they did. Still she says that Dr. Clyne will decide in the morning if he can do the tubes for Siennah so we should follow the same anesthsia instructions for her.

Amy explains that the surgeries have been moved to CMC Pineville because of Savannah only weighing ten pounds they have to be done at the hospital instead of the South Park Out Patient center. We have to be there at 10:00 a.m. Savannah’s surgery is at 11:00 and Sebastian at 11:30.

Meanwhile Dr. Queen wrote a prescription for Siennah.

Since she has also done, Amoxicillin, Augmentin and Omnicef already, Dr. Queen prescribed Biaxcin, an antibiotic from a different “family.” for her. She said it will taste horrible but should get the pus clearing if Dr. Clyne can’t do the tubes in time.

I took the girls to Target and filled Siennah’s prescription so we could get her going right away. Then I went to Pat and Janet’s where they had pizza waiting. I'd forgotten about food! I’m starving! I scarf down two pieces and my phone rings.

It’s one of Sebastian’s Wish Granter’s Shonda. She’s waiting outside our house. Of course! We needed to have her sign some paperwork. I left Brian behind with the kids and came home to take care of this stuff.

I got a couple calls tonight from the hospital to pre-register for the surgeries. Savannah can’t eat any thing after 3:00 a.m. and Sebastian (and Siennah) after 5:00 a.m. Three hungry thirsty kids….that’s going to be fun! Ack!

I don’t have a thing ready for tomorrow. My head is spinning. I’m trying to digest that this will be Sebastian’s fifth surgery this year and that my barely four month old is going under general anesthesia.

Can I really pack five people for a nine day trip in one day? I had a good bit of packing done before Savannah went into the hospital but then I had to unpack and use the toiletries and such when we left for the hospital in a hurry. Now, I’ll really only have Friday.

By the time ya’ll read this we’ll probably be at the hospital. I know I must sound like a broken record but please say some more prayers for us.

 

[LuvGoing2Disney7]

I feel like I’m on this cruel roller coaster ride. One day up. One day down. Here is how my day went…

By the time ya’ll read this we’ll probably be at the hospital. I know I must sound like a broken record but please say some more prayers for us.

Oh Amber....what a day you've had. I'm so glad the doctor fit you all in though. Tubes are wonderful. It's amazing how something so little can make such a difference.

I'll be praying for quick, easy surgeries. You need this vacation more than ever