Sebastian's Make A Wish Trip to Disney

[tinytreasures]

good luck with your third set of tubes

wow praying for a very quiet Christmas for your family

 

[twob4him]

Hi Amber...I am checking in today to see how yesterday's appt went and I see new developments...in the ear department...what a surprise. So the fever and throwing up etc is due to what.....another ear infection with tubes??? I am so confused. And poor Siennah with hers...glad you are able to get her tubes in after Christmas. Hope the shots are working!

Yaaaa for you getting someone to help you out....and I hope you are napping and snuggling because that is what is most important!!! I bet Sebastian loved going to work with daddy. My girls would love to do that too!

Well, I will check back later to see any updates and I would just like to say that you are my hero...you are so strong and such a great mom!!! Merry Christmas to all of you!!! I am praying for you still!!

 

[kimmylaj]

merry christmas and hugs to you and your kiddos

 

[twob4him]

Just walking by and I am hoping all is well!

 

[mom2lilnick]

I have also been wondering how the appts were coming along. Praying all is going well. Hugs!

 

[AmberGreenawalt]

It's been awhile since I have been able to do an update so I'll try and get caught up

I think I left off with Monday, December, 22nd so I'll pick up on Tuesday.
Our first stop on this morning was the ENT for Siennah. We met Dr. Miltich. I was nervous about him but the nurse who checked us in said she picked him to do her son's tubes. That's always a good sign.

Siennah's tonsils are inflamed and she has a lot of nasal congestion so Dr. Miltich said he was going to do the adenoid evaluation as well. Given she's been treated for two sinus infections in the past two months he said she was more likely to need them out than Sebastian was.

God bless Dr. Miltich he agreed to do the surgery before 2009 on Friday morning the day after Christmas.

At this appointment Dr. Miltich also told us that Sebastian had a partial blockage of the tube in his right ear but we should be able to clear it with drops.

For lunch we had sandwiches at the Presbyterian Medical tower cafe and then went to Savannah's GI appointment.

At weigh in we found out Savannah lost another ounce. It sounds silly to care about ounces but I do.

Dr. Brenner was nice. He said he was glad to be joining her "team." That's the first time it hit me that she even has a "team." He thinks we're missing another member of the team. After we ran through all her symptoms with him and he examined her. He told us he thinks she should see an Immunologist.

Dr. Brenner said he can help us as far as intake and output and metabolism. He is starting her on another medicine called Bathanecol that should help her get more "bang for her buck" out of her food by moving it through her digestive system quicker...hopefully before she gets a chance to vomit it back up.

I gave Savannah the Nutramagen formula on Monday that told us to feed her when he talked to Dr. Queen on the phone-- Forced the Nutramagen upon her is more accurate. She hates the stuff. If you've ever smelled it you would understand why. The bottle of Nutramagen that she drank at 6:45 p.m. she spit up at 9:45 p.m. So, I told Dr. Brennar this and in the end he said to go ahead and give her the Early Shield along with nursing.

After two weeks if she hasn't gained enough then he'll switch her to a 24 calorie formula. He says he's keeping that as the ace up his sleeve. I actually like that he said that he is a "Nursing Nazi" because he said that was the last thing he would take away. Nursing has been going a LOT better for us lately. We've settled into a nice alteration between breast and bottle.

On Tuesday the 30th Savannah will go under so that Dr. Brennar can do an endoscopy down her throat and another up her rectum.

At this point Savannah still had a fever. Dr. Miltich said her ears were looking good.

Also on Tuesday her tongue started bleeding. It had red patches (not really "sores") and white dots. It didn't look like Thrush to me...I called Randolph and since it stopped bleeding the Nurse said she thought it could wait until our appointment Wednesday morning. I went online and spent hours trying to figure out what could cause tongue bleeding in an infant.

That night we did one of our little Christmas traditions with the kids. We made a Gingerbread House from a kit. Sebastian was so patient about waiting to decorate the house. We kept putting him off so we had to make sure we got it done. I put the frosting on and then let the kids go to town with the candy. I smiled when I thought about how the Amber of old would have cared how the house "turned out." Whether is was symmetrical or two of the same color gum balls were next to each other. I was just glad that we were doing this project together. And the house...it was perfect...a big old crazy, unsymmetrical hodge-podge.

I also worked on folding the laundry. It took me the whole week to get it folded and put away so that at least we could see the floor of the bonus room...it had been covered in piles and piles of clean clothes.

On Christmas Eve, Wednesday I feel like my Christmas Wish had come true. Savannah’s fever finally broke and she seemed so much better!

When I took the girls to Dr. Queen ton Wednesday morning both of their ears looked good and neither of them had to get another nasty Rocephine shot. I even got a refund for Siennah’s co-pay. Can you believe it? A refund!

Before we left for this appointment I had stuffed Savannah full of 4 ounces of Yo Baby yogurt and cereal. I wanted her to finally have a gain and she did! Savannah weighed 10 pounds 10 ounces, the most she has weighed since early November. The best part though is that she had not spit up in 48 whole hours!! Not since the Nutramegen bottle.

Her mouth looked more like Thrush by Wednesday. Still not white curds but there are white patches, red patches and red sores. We got a prescription for a Nystatin oral suspension for her. The good news is that if she can get off antibiotics for awhile her yeast problems should clear up.

We ended up having such a great day together! After leaving Randolph we took the light rail train uptown to see the Bears Orchestra and then we had lunch at Fox and Hound. We had the place to ourselves and it was wonderful!

Then we rushed around Target getting last minute items like panty hose and egg nog (Santa likes egg nog you know!) and then we came home and got all decked out in our Christmas finery for Mass. The kids looked darling. Every year I plan these great matching outfits and then when it comes time for pictures the kids just don’t share my enthusiasm for getting a picture of all three together smiling…real smiling not what I call “cheese face.”

We got to our church at 3:30 p.m. for the 4:00 Mass and both services (they were doing two Masses simultaneously) were completely full. We parked and tried to check it out but hundreds of people who had been turned away by the police were walking back to their cars. One lady in the parking lot asked me, “what do we do?”

I said, “I don’t know. I’ve never not been able to go to Mass before.”

It's the Fire Marshall laws. People have to be able to get out in an emergency.

A nice guy stopped and told us that there was a 4:30 service over in the gym at Charlotte Catholic High School. So we headed over there. The parking lot attendant told us that would probably be full too but we decided to give it a shot.

We ended up getting a great parking space at Starbucks and finding seats for all of us. I can’t even tell you how happy I was in my heart that we got to go to Mass. Everyone was so cheery. Monsignor did a really nice (and short—perfect length for kids) service and the music was beautiful.

As we sang carols like What Child Is This and Silent Night I cradled Savannah. I looked at my three sweet babies and I thought about the pure joy that Mary must have felt on this blessed night as she held Jesus in her arms for the first time.

After Mass we picked up a mini feast at Boston Market for $20! I was so happy to see that they were selling coupon books to support Give Kids the World. I promptly bought up one of those. If you get a chance please stop by Boston Market and pick up one of these coupon books. They are opening up a whole restaurant at Give Kids the World.

We came home, ate our dinner on paper Christmas plates and drank Sparkling Grape Juice. It was great! Clean up was a cinch. We got the kids in their matching Christmas Pajamas fixed hot cocoa and settled in to read the story of the Nativity.

Then it was off to bed for visions of sugar plums to dance in their heads. What a lovely Christmas Eve together enjoying each other.

I was recently watching an episode of John and Kate Plus Eight were they visited St. Jude Children’s Hospital. Kate was talking with the families of the sick children and one of the mothers commented to Kate that they actually felt like their daughter having cancer was the best thing that’s ever happened to their family.

This might sound utterly nonsensesical and perverse to folks…who would WANT their kid to face a life threatening illness but I totally understood what she meant.

The mother went on to say that she felt like they were lucky because they knew the “secret”…what life’s purpose was really about.

This year has left me changed for what I consider to be the better. Things that were important to me before just aren’t anymore. For example I used to really stress about finding Brian the "perfect gift." This year we didn't have much to exchange. That's okay. I know it doesn't mean we don't share a great love for each other. I certainly didn't care if I got anything or not. I can't always say that was the case. These days I got more of a thrill watching my daughter unwrap her $10 Cinderella doll than I would if someone gave me a cashmere sweater.

I know in a way that I could not have before, that it's just not about the stuff...or the perfect gift...or meal...or the deocrations or even the clean house. What's important is that by the Glory of God, we were together on Christmas Eve and for the first time in many, many days all three of my kids were healthy---what greater gift is there than that?...even if it was just for the day

We had a great Christmas day! The kids actually slept later than they usually do. And by this I mean that dawn had actually broken...but not by much Sebastian came into our room and snuggled with me. He was so giddy! He told me that he had heard Santa up on the roof!

We spent the morning opening gifts. It was so much fun this year because Sebastian and Siennah were just so excited! This year I wrapped each person's gifts in different paper so there was no need for tags and Santa was kind enough to do the same. Sebastian and Siennah knew which gifts were theirs and had a blast digging in. We took lots of breaks to play with the toys before opening the next fun thing. We also stopped to enjoy some yummy cinnamon rolls.

Brian had a very efficient clean-up system where card-board went in one area and tissue and wrapping in a giant trash bag --today we drove it all to the Recycling center.

It was hard to be apart from Grandma and Pap Pap again this Christmas. While the kids opened their presents from them we put them on speaker phone but it wasn't the same. I hope we can all be together next year.

On Christmas day Savannah broke out in a red rash that covered her body from head to toe. I'm thinking that that the fever she had from Saturday to Wednesday might have been viral...my best google inspired guess is "Sixth Disease" (Rosceola). Children have a fever for several days followed by a red rash on their bodies once the fever breaks. She seems like she is doing much better! We think the Bathanecol is really helping her keep her food down. My concern though is that not much is coming out the other end now either. She pooped for the first time today in seven days. Hmmm?

The day after Christmas, Friday, Siennah had her surgery to place tubes in her ears and to remove her adenoids. It was an adventure!

We were up really early. I had my alarm set for 5:40 a.m. but Siennah actually woke up at 5:30 a.m. and came down the hall. She said "We go to hospital." --That kid never ceases to amaze me! I got ready and let her stay in her pajamas. The two of us headed to CMC Pineville hospital and checked in at the surgical desk.

Shortly after we were called back to the financial counter where I gave them all our our insurance info and Siennah got her patient bracelet. Then we headed back to the waiting room but it wasn't long before another nurse came to get us.

In the pre-op area we found out that Linda was going to be our Pre-Op nurse again. I really liked her from Sebastian and Savannah's surgeries so I was happy she was with us again.

Siennah was pretty freaked out by the whole medical process. Sebastian has become such a pro at it and Savannah doesn't know what's going on so I forget how scary it all can be for them. It took two nurses and myself to hold Siennah still enough just to get her temperature and pulse. That was even after giving her the Versed!

The anesthetists were two nice ladies who did their best to put Siennah at ease. She was the first surgery of the day so things moved really quickly. Dr. Miltich came in and talked to me and the then shortly after Siennah was taken off to the O.R. Dr. Miltich walked me back out to the waiting room.

I read the newspaper while I waited and watched the news on the T.V. in the lobby. Dr. Miltich came out and crouched down next to me and told me about how the surgery went. Everything went well. It was at this point that he finally gave me the low down on what to expect as far as the recovery from the adenoidectomy. I had asked him about it in pre-op but he didn't want to go that far ahead. I could see why. I would have just started worrying sooner.

Not that anything he told me was terrifying...it was just kind of gross. He told me to expect some bleeding and a funky smell to develop. He said if she smells so bad that we can't stand to be in the same room as her to give him a call and he will put her on an antibiotic.

He prescribed Lortab for pain. This worked out great because we already had some at home from when Sebastian came home after having his Craniotamy.

One of the volunteers took me back to the PACU to see Siennah. I could hear her before I could see her. She was wicked upset! I went over to stroke her head but the volunteer insisted I "foam" my hands before touching her. That was interesting given that in the tseven times I've been in the PACU this year that's the first time I've had to foam...but okay...less germs is good.

The PACU nurse wanted me to pick Siennah up right away. So I sat with her in the rocking chair and tried to comfort her. No sooner was she in my lap than her crib gurney was being wheeled out into the hall for sanitizing.

Even though she was the only patient in the PACU I got the feeling like we were being rushed along. I asked the CNA cleaning the crib if they needed it for another patient and she said, "No."

The Nurse brought some apple juice over for Siennah to drink. Sebastian has never been able to drink this soon and I remember it felt like forever before they would let Savannah breast feed so this seemed so strange to me. Next thing I know our nurse was asking Siennah if she wanted a Popsicle. So Siennah's Popsicle melted onto me because she was really in no state yet to eat it.

Then the Nurse came over and started to go through the discharge information with me. I got a call on my cell phone from Presbyterian Hospital to pre-register and go through the anesthesia questions for Savannah's endoscopy on the 30th. Then Brian called. The Nurse stood near the whole time eager to finish her spiel. It all seemed to be moving so quick.

Next the Nurse removed Siennah's IV and I put her clothes back on her. Then she said, "She's free to go whenever your ready."

So I did my best to finagle my pack back onto my back while carrying Siennah and her dolly and blanket. A wheelchair would have been helpful. Anyone who has carried a sleepy kid knows what "dead weight" they turn into.

I carried her out to the van. She was still totally groggy and loopy. She saw the grass in the parking lot and started saying, "Don't pee on the grass! Don't pee on the grass!"

I got her put into her car seat and then started driving home. I called Brian to let him know we were on our way home. As soon as we got off the phone I looked back and saw Siennah throwing up like a GEYSER. Red watery liquid was shooting out of her mouth like a kitchen faucet on full blast. She stopped and then started up a short while later.

I was utterly amazed at how much she was throwing up given that she had not eaten since dinner the night before at my friend's house. She must have swallowed a good bit of blood.

Brian jumped right in and helped as soon as we walked in the door. I took Siennah up to get a bath and he took care of washing the car seat, clothes, blanket and even dolly.

I put Siennah in some nice new pajamas and we all sat down in the Family room to catch our breath. As Siennah got up she vomited blood again all over the Family room carpet. Brian moved her to the kitchen where she vomited again.

I took all the kids upstairs while Brian busted out the carpet cleaning machine and worked the stains out of the carpet. I gave Siennah some Lortab because she was saying that her throat was hurting. After Brian came up to the Bonus room we put Wall-E on. I kept drifting in and out of sleep. I was just so exhausted and it was only noon. Brian told me to go in the bedroom and take a nap. I slept for two and half hours...I could have slept all day I think if I hadn't felt guilty about leaving Brian with the kids. Siennah slept until 4:30 in the afternoon!

By the evening Siennah was doing better. She had a purple bruise on the bridge of her nose. We can tell when the pain medicine is wearing off. She tells us that her throat hurts and that she wants medicine. Siennah is NEVER one to ask for medicine unless she really feels awful. Kids are so resilient though. I'm sure it won't be long before she is bouncing of the walls again.

Saturday night Siennah woke up crying. I jumped up to find her in her bathroom on her toilet wailing that her throat hurt. She was making funny sounds with her throat that sounded like she was going to vomit. I ran down and got the Lortab and gave her some pain medicine. Brian, who had been holding a sleepless Savannah, felt Siennah and said she was hot. I took her temperature and it was102.3. I got a wash cloth and wet it and put it on her head. We got her fever to come down by morning.

By this evening, Sunday, her temperature was back up again. She was up again crying. She also really smells funky. So tomorrow I'm calling the ENT.

Sebastian was also running a fever today of 102.8 We went to see Desperaux today and then went grocery shopping at Wal-Mart. When we came home we un-loaded and put the groceries away. We found Sebastian asleep on the family room floor. He woke with a fever and complained that his head hurt.

I sure hope we look back on these times some day and have a good laugh that we made it through thier childhood. If you made it all the way through reading about our last six days I hope you are not as exhausted as I am....I'm off to bed

 

[llurgy]

We will have to start calling you Zombamber!!

You poor lass All that turmoil and all that sickness

When all of your kids are finally well for a few days I am afraid you will miss it *** you'll be asleep for the interim and when you wake up they will be coming down with something again

Only joking, I am happy to hear there were a few shining moments in your hectic Christmas time and that all of your expensive ops and look-sees are going to be dealt with this year rather than next.
Good luck on Tuesday!!

Mandy

 

[kimmylaj]

wow i am exhausted just reading it , i cant imagine going thru it. you guys are champs

 

[mom2lilnick]

Whew! I am tired! If you need any advice on the immunology end of things, let me know. Hugs sweetie hang in there.

 

[Khalana]

Crazy, crazy, crazy!! I'm really sorry your little ones have to be so sick... I pray that you all wil get a BREAK soon!

 

[tinytreasures]

Whew! I am tired! If you need any advice on the immunology end of things, let me know. Hugs sweetie hang in there.

I'm here too if you need any help

 

[twob4him]

This is so unbelievable. Seriously....how are you handling it all Amber???? I am praying for you all. Glad your Christmas Eve was so nice and the kids were feeling better. I watched that same episode of Jon and Kate, crying and thinking of you. I am glad you understand the meaning of life....none of this is going unnoticed! Hope you get some much needed rest!

 

[mrsksomeday]

Amber, God bless you and your family . I don't know how you and your DH handle all this. It has to be so scary and frustrating. I hope you are getting all the help you need so you can get rest as well.

 

[iluvmyfamily]

Hi Amber:

I have been following your pre and post trip for awhile. I just feel for you! Please look after yourself and take the time to be with your kids. They are sooo cute! Take it easy! Lots of

 

[pigget74]

to a speedy recovery!!!

 

[maroo]

wow

i am speechless

which happens...well...never

I hope you guys get well SOON!!!!!!

 

[MondoWishes]

Are you proud of me? I came straight in to look at the wishtrippers pages. Now that I've been off for a week, and Christmas has came and gone... Maybe I can get caught up on these boards! I can't wait til Saturday for us to hang out and catch up on your trip. Abbie's trip is 3 months and 12 days away!!! Yeah!

 

[AmberGreenawalt]

Yesterday was another long day at the hospital. We got there at 9:30 a.m. We were directed down to the basement of the hospital. The whole set up had kind of a depressing feel to it. Maybe it was the low ceilings?

A CNA named Joris (like Doris with a "J" as she told us) checked us in and then took us back to our pre-op "room" to get her vitals. She needed to get Savannah's weight but they didn't have a pediatric scale. So Joris weighed Brian while he was holding Savannah and then subtracted his weight without him holding Savannah.

Since the weight was being used for anesthesia purposes this just didn't sit right with me. I was being totally neurotic that the weight be more accurate than this crude method. So I had our Nurse take us back to the scale and they put a blanket on it and then zeroed it out and then I undressed Savannah and placed her on it. They made me keep he diaper on though so it wasn't a true nude weight. Even with the diaper on though her weight was 10 pounds 2 ounces...half a pound less than last Wednesday.

I attributed the loss to the fact that she had not had anything to eat or drink since the night before.

I rocked Savannah in the squeaky chair to try and calm her down. Considering how very hungry she must have been she was a trooper!

The anesthesiologist and the Nurse anesthetist met with us. She let us know that Savannah would be intubated. I asked about who would be starting the IV because I'm still miffed about Siennah's botched job. Faye said the same thing could happen with Savannah especially since they needed to draw so much blood.

Dr. Branner, the GI also talked to us. In talking with him we mentioned about how Savannah had gone from pooping several times per day to pooping once a week since starting the Bethanecol... dark, dark green stools at that. He thought it was quite strange that a medicine that should actually make her poop more often because it speeds up metabolism has actually made her poop less. Strange indeed.

One of the Nurses let me know that two of the tests that our pediatrician ordered would not be able to be done. They would not be able to do the Nitroblue Tetrazolium dye test. The Nurses told me that no one there knew what this tests was. I found out later that the test is done by adding a dye called Nitroblue Tetrazolium (NBT) to white blood cells. Normally, the white blood cells turn blue when NBT is added. This means that the cells are producing the chemical necessary to kill bacteria.They also did not have the equipment to do the Urine Organic Acids tests.

Then the nurse anesthetist came to take Savannah off to the O.R. and Brian and I headed back to the waiting room.

I went up to the "All Spice Cafe" cafeteria and got some lunch for Brian and I and took it back down to the waiting room. The Chefs at the "Exhibition Station" always make something great! Today it was chicken and pasta with lots of fresh veggies in an Alfredo pesto sauce...Yum. I mean if you have to look at the bright side of a trip to the hospital this is it!...seriously folks it is restaurant quality and for $6.79 (including a drink) it's enough for Brian and I to share.

We ate and waited. We joked about how we could write a comparative analysis of the various surgical centers in Charlotte. If I could put together my favorites I would choose:

CMC Pineville for Pre-Op: Their check in system is very efficient. You are given a number assigned to your child so you can follow what phase they are in on a giant screen in the waiting room. The financial department officially checks you in and gives the bracelets. The Pre-Op nurses are sharp and fast. They have toys, gowns and warm blankets waiting on the beds for the kids. They are also really quick with the Versed.

I would choose the PACU at Levine Children's Hospital. It is by far the most kid and parent friendly set up with private rooms, not just curtained partitions and T.V.s playing cartoons. They wait a reasonable amount of time for liquids and posicles and wheel chair transport takes you right out to the front of the hospital where you can drive your car up and transfer your child right into the car.

I would choose the waiting room of Presbyterian Main's second floor O.R. They have volunteers that update you on how you child is doing. There is plenty of seating and T.V.s and a wall of magazines. There is an area with vending machines. There are also several private rooms for the doctor consults following the surgery this allows for much more privacy than at the other hospitals where the doc just talks to you in the waiting area.

Back from my tangent...Dr. Branner came out and took us to a little consultation room. He went through all of the pictures from the endoscopy and the colonoscopy (sigomoidoscapy). Everything looks completely normal!! Her esophagus, her stomach, rectum, colon...no signs of ulcers, inflammation or allergy. He took a bunch of tissue biopsies during the procedures. We will got over those results next week when we meet again.

I don't know whether to feel relived or just more perplexed.

I had brought the Symphony pump that I rented with us since it was due back on the 26th. Even though the Lactation center was on the same floor it was quite a haul through a maze of hallways. Once I got there I asked how much it would cost to keep the pump for another month and the Consultant told me it would not cost anything, that they would just continue to file with our insurance company. Sweet! I renewed it for another two months.

I literally ran back to the waiting room with a big plastic pump case over my shoulder. When I got there Brian was gone. Which must have meant that Savannah was coming out of the anesthesia. The CNA at the front desk directed me back to the PACU area.

In the hallway, Caroline the Child Life Specialist that we had met earlier found me. She said they had called over to Radiology about the ultrasound and got the go-ahead for Savannah to eat. Caroline said Savannah was HUNGRY! When I got to our station Brian was bouncing her in his arms. In less than 30 seconds I had her in the rocker nursing--hoovering milk down. When she was done with that I gave her a full bottle.

After she was done eating she perked right up! Look at this little sweetie! She was charming all the nurses.

Our nurse removed Savannah's IV from her arm. She also had bandaging on her foot where nurses had obviously tried to start a line. The nurse showed me that she had also started to bruise on her neck. Even though she had an IV placed the blood drawn was done through a needle from her neck.


I am so glad that I did not have to watch that. For some reason even thinking about it turns my stomach.

The blood drawn was for a whole gamut of different tests: A Complete Blood Count (CBC) with Differential, Eryhrocyte Sedimentation Rate (ESR)Test and C- Reactive Protein (CRP) Tests for inflammation in the body, T4 and Thyroid Stimulating Hormone (TSH) tests to test for Hyper and Hypothyroidism, a Complete Metabolic Panel, Serum Amino Acids, an HIV test and a Quantitative Immunoglobulins test to looks for the proteins IgM, IgG, and IgA.

Our nurse called Transport for a wheel chair to take Savannah over to Radiology. We had a 1:00 appointment for her head ultrasound. We waited twenty minutes and the wheel chair had still not come. Since we were fifteen minutes late at this point we insisted to the nurse that we would be fine to carry Savannah over to Radiology.


It's ironic to me that on Friday I needed a wheel chair for Siennah and none was offered and today we didn't need one and it was being insisted upon.

We checked in at Radiology and apologized for being late. I explained that transport never came. No sooner had we sat down in the waiting room than we were called back to the exam room.

The Ultrasound technician put some jelly on Savannah's head and put the probe on top of the area where Savannah's soft spot is. This unique type of ultrasound test is possible in babies because the fontanel has not yet sealed. The ultrasound waves are able to travel through the hole and transmit an image. Once the skull plates have sealed CT imaging has to be used instead.

A guy named Dr. Barr came in and told us that everything with her head ultrasound looked totally normal.

Siennah still had a fever heyesterday so I called t ENT. Dr. Miltich called in a prescription for Siennah for Amoxicillin. I think my kids are immune to Amoxicillin so hopefully it will work for her.

Grandma and Pap Pap kept the kids for us all day and fed us meat loaf for dinner. I fell asleep on their couch again...I'm so tired lately! Siennah woke up a couple times last night crying that her throat hurts. I gave her some Motrin. I got the go ahead with Charlotte EENT to alternate between the Motrin and the Lortab so that we can get ahead of the pain.

I took Savannah in to our pediatrician again this morning. I'd been hoping the weight loss was just the wacky scale at the hospital and the not eating the night before the scope. But her weight was still showing an eight ounce loss from last week.

We attempted to get a urine specimen for the Organic Amino Acids test but Savannah ended up pooping so that did not work. Our doctor gave me some items to collect stool samples at home for a hemocult test.

Savannah also vomitted up some thick mucus twice while we were there and again since we got home. That was strange. Maybe a side effect from the Bethanecol? She still has yeast on her groin and in her mouth despite being off antibiotics since last Monday. Thrush is quite stubborn. We'll give the Nistatin another week and then move on. Dr. Queen did mention Gentian Violet though it is supposedly quite messy.

I just want this all figured out already... or... for her to just gain some significant weight. You can't fix something when you don't know what is wrong or the cause. Plus it would be nice to know that I am not going crazy. Dr. Queen says there will be something that is the "key"...I have faith.

Savannah also got her HIB vaccine today. She didn't get the other ones she missed because they can cause fever but at least we've started toward getting her caught up

Brian is sick as a dog today. He hasn't gotten off the couch. I am irrationally upset about this. I feel too tired emotionally and physically to deal with the kids on my own but of course it's not his fault he is sick.

I'm over the Winter and all it's pestilence!

I sound pretty negative huh? I've never been so ready for another year to come! I am optomistic for 2009...It has to be better. It will be. It's going to be great...and healthy...and prosperous and full of joy!

HAPPY NEW YEAR!!!

 

[maroo]

Happy New Year, Amber!!!

It sounds like you have had a crazy month...or so!

You are an awesome Mom, ya know that? They are lucky to have such a great advocate for them!

2009 is going to be an AWESOME year for all of us!!

 

[LuvGoing2Disney7]

I've never been so ready for another year to come! I am optomistic for 2009...It has to be better. It will be. It's going to be great...and healthy...and prosperous and full of joy!

HAPPY NEW YEAR!!!

It absolutely has to be Amber. I have been praying and praying for your family. It's so hard having one sick child, I can't imagine three. I wish there was something more we could do to help you out. I can imagine you are purely exhausted.

I hope Brian feels better too, you need help and deserve a house free from illness