Family...

I was just sitting there holding Riley and singing her her favorite silly "Where is Riley" song and rocking her back to sleep. Every time I would stop she would then start humming it as to say, "don't you dare stop... or I'll scream". She has become so cuddly lately and it is so sweet to see how much she loves us! I was thinking about this earlier while laying on the couch with Liam as he was falling asleep. He tells me at least ten times a day how much he loves me and how "I haven't gotten to wuv you all day...!" at the end of every day and most mornings too, lol. He is so sweet and kindhearted, and I just pray every night he can endure this and make it through everything we go through and never loose these qualities. I know these years will not last forever and before I know it the kids will be teenagers. That's another one of my greatest fears. As quickly as time has past since Riley has been born I'm afraid these next 5 or 10 years are going to fly by in one big blur and I'm going to miss all of this time that is so precious with my children. It's not like we get a choice most days. I can't reschedule Riley's fever she decides to get at the last minute. This then means Liam wakes up the next morning with Mommy and Riley just gone to the hospital in Orlando, again. Never being able to say when we will be able to return home or when he will see us next. I think we all have some sort of fears about raising our children. I think we all have certain things that we all make a point to do differently than the way we were raised. I fear though that given our situation I wont be able to change the things for my children that I desperately want to be different.

I struggle everyday with my feelings towards my entire family. It has actually been a huge burden on me, especially lately. My feeling are making it so we can't have much if any relationship at all. It is very painful to not have them here supporting us. I wish so much things were different, but I'm finally coming to terms with the fact that it never will be. I wish so much my family was important to them. It feels like this has been an impossible thing we have been asked to go through, some of you know ALL the issues we deal with and face, and yet we are still somehow standing today . We are still fighting no matter how many blows we take, NO ONE thought we would be, everyone said it was hopeless. The statistics were so against us it was crazy to even think we could beat this. We have come so far and we are so much stronger now, as a Family (Wil, Liam, Riley, and I). Some have been there at times and other's ran quickly after all this started but no one has been there with us through it all. Money is not everything, it is desperately needed at times of course, but it does not make up for everything. Family is supposed to be your support, your consistency, there for you when you need someone to cry to. Through all the hard times! They are the only one's you are supposed to be able to count on to be there for you in times like these. But as I have said before I am so thankful for everything I have been through in my life. Everything from my past prepared me be a fighter and be strong, ultimately to be Riley's mother. And I will make sure I am always there for my children and I will never let them be alone or go through anything alone. Parents say you will always be their baby, well I will stick to my word. Just as I have never let Riley spend one night of her life in the hospital alone (and most of you know that's A LOT of nights) I will never no matter if she is 30 let her go through anything alone if I know she needs me. I can not fathom making it through a day knowing she is struggling and fighting so hard on her own and not being there to help ease her burden in any way I could. I will never let anything or anyone stand in my way of being there for my children. NOTHING would stop me. Life is to precious. Tomorrow is not a guarantee. If you died today would you be happy with what you've done in your life? Or how you have left things! I guess it all comes down to priorities and what is important to you. Saying, "It's not that easy" is a cop out! Nothing in life is easy. If you feel strongly about something it is easy. I wouldn't want any person in my life like that anyways! We will survive this and come out stronger in the end. Our Family will all continue to beat the odds no matter what!

Remembering Why We Do It

It has been busy as usual around here the last few days. Settling back in is always busy whether it was from a 2 day stay or a two week stay since both require halting our lives in the middle of everything and throwing everything required for a small army into some bags and leaving everything exactly as it is only to return however long later only to find things exactly how you left it only smellier and somehow you have twice as much to put away. Sometimes I get everything put away quickly and other times I think I'm afraid I'll jinks myself if I unpack our bags to soon. This time I'm being slow about unpacking... or maybe that's just my excuse for being lazy, LOL.

I think it might have more two do with my 3 year old who's hyped up on steroids and hasn't been sleeping at night. Yep, right when I have been running the baby's IV abx between 12:30 and1am he has been deciding to get up. Finally at about 4:30 this morning I went and got Wil and made him get up with Liam since I couldn't take the wild boy jumping on my bed any longer. This morning I found out he had gotten into a bag in my room that had a package of sour gummy worm's in it and decided to help himself when I had drifted off for a minute. It all made a little more sense then. He was barking like a little seal and trust me he didn't let that stop him from jumping on my bed all the while! He had his pre-op appt. today for the his sinus surgery. More steroids before the surgery to get all the swelling in the sinuses down, ohhh goody! *Sarcasm Intended* But I'm sure the best part will be the packing afterwards! try getting a 3yo who constantly picks his nose to leave that in for like a week. That should be interesting! Of course he'll get his ear tubes put back in as well but since this is set #3 nothing new or exciting with that.

I did meet with the programs director at a new school for both the kids today. It was very refreshing to talk to someone who knows the whole system around here and who has all the right connections for me! It's a school that accepts kids with all sort of issues and it's half "typical" kids who are used as role models and half kids with medical or developmental issues. It's an amazing school with every kind of accommodation including an amazing playground that is completely covered and has a cooling system with a butterfly garden and it's own rock waterfall... Ya, it's so nice! Liam is on the wait list but Riley will be able to start a new program in a few weeks. It's mostly for socialization, it's only 3 days a week and 3hrs in the am. This is perfect for her and the classes only have 10children a piece. One of the days a parent goes and participates but not the other 2 . Of course her nurse, Wil, or I will always have to attend with her to give her medical care since they don't have an RN on staff. Liam also needs to have an IEP written. The whole school thing is a whole new thing but hopefully we should have it all straightened out by the fall so that's good!

Don't forget my school started this last weekend and we are trying to get approval for some extra services to help so Wil can start back to school in the fall.

And then there is Riley.... I have been trying to arrange everything for NC. I had called the nurse there to get a referral for a program that gives reduced airfare to kids traveling for medical appt, when she calls back to say they changed the appt. So after 2 days of phone tag and a lot of confusion they changed the appt to a month later. We will now be going on July 14th. There is some autonomic specialists that wont be there until then and all three of these drs. will be together to do specific autonomic testing on her apparently. I am nervous about her waiting that long since she has never done well on 100% TPN and nothing in her gut but I guess we will just play it by ear. This appt and testing is really important for her! Ya, and the temp and autonomic issues are still happening.... I am just going to keep being oblivious and live in my happy place until told otherwise and think it's just from her teething. We had also lost another nurse last week so we've only got 3 days a week covered again. Hopefully one of these days the agency will call with some good news like they found us a new nurse.

As you can see this has all gone on in the last 2 or 3 days and we manage to stay so busy it will literally make your head spin. Add school work, house cleaning, phone calls, running errands and a few days of work and some days it feels like you even forget to breath your so busy! I love the evenings though. They are so peaceful and quiet. You can see what you did it all for. Two very happy and normal looking children who love each other so much and are totally oblivious to the fact that they have anything "wrong" with them and thinks it's the norm to have a nurse hang around your house. In there eyes and mine they are perfect and that makes everything we do worth it!

Home but there's a Catch

The catch being that the doctor really dropped the ball on us.... This was at our local hospital so all the kids there are managed by there pediatricians group. Well someone new was on this week, this was her first time managing kids at this hospital. When we were discharged this morning to say I was frustrated would have been an understatement!

We essentially got what we needed done while there but we were there but we were sent on our way with no plan. We figured (I figured) out that the Broviac must be up against a wall or something since it is so positional it is almost impossible to get blood off of but still works great, thank god! So this was basically just not even dealt with as planned. The cultures were drawn and came back negative. This was a very good thing. Here's where all the glitches start coming in, first off she had labs on Thursday and Friday since they were ordered by her pediatrician. She also had a CBC done only because I begged since her H&H had dropped over a point in 1 day and also her WBC's had gone down 3 points in a day when it wasn't super high to begin with. Anyways, she had refused at first but finally called back and agreed to do the CBC but refused to check her Chemistry when we were having some issues with that too. We had to do her Gentamycin level and get her sed rate anyway so it's not like we were doing it just for this. So overall her WBC's dropped over 6 points in 48hrs. to an all time low of 3000. Her H&H was down to almost where we transfuse her at and her sed rate was also elevated. This was brushed off as no biggy. She certainly didn't check anything again after Saturday night. Also, the fact that she never had another temp since starting the abx and don't forget, something all my mito mom friends will understand, "SHE LOOKS GREAT" combined with the labs must have meant she had a virus.... Agggghhhhh, ya that's me screaming and wanting to pull out my hair, LOL! She had these fevers for 7 days and she was 100.3 when we got there Friday. Not high but she had consistently been in the 100's and low 101's for 7days and her labs were getting funky so aren't we lucky that the"virus" miraculously went away as soon as we started the different abx!

Today we were sent on our way and told to just start her back on her IV Ancef (abx she was on at home) and basically have a nice day. But, we were supposed to be done with them today. That is one problem and another is if the Ancef wasn't working before why the heck would it work now.... HELLO. This has basically guaranteed our ticket back into the hospital by the end of the week, that is really frustrating! She refused to call her GI and let him know and she also wouldn't call ID and let them know the situation either. She was as useless as a resident. At least they have people constantly have people reminding them they don't know everything when they think they do! She is on my list now....

Anyway, I did call ID after we got home. After a few miscommunication and phone tag I had just missed her for the day so I never got an answer today. Riley has been sleeping a lot today. Her temp was up to 100.3 when she went to bed at 5:30 for the night.... Liam has croup again. I actually have to go pick-up his steroids now. I think we are all just tired for today. There were many other things today but I'll have to get those in another time. But, hopefully tomorrow will be a better day after a good nights sleep in our own bed.

Same ol' Same ol'

The hospital life never changes much On Call docs to deal with, new nurses who aren't completely familiar with Riley, lack of sleep (for everyone), Hyper Liam from all the attention and lack there of, having to ask permission and get orders to do every little thing and explain why we do it, and the list could go on... but I'll spare you! LOL

I think when you have a flat out complicated kid it's always this way unless Wil and me are doing all our care and it's being coordinated though only our docs. So, as I said I guess you just get used to it all after awhile but some things just never change. Nobody knows the true feelings of it all unless they have been there. No matter how hard they try they never can. Between the frustrations and the joys and how you get through the day to day of it's just something you have to be in to "get". When the rare occasion comes along that you are able to finally find someone who does then it's surprising how much hurt and sorrow you have for them because no one should have to endure this. I think it is a very torn feeling since your heart is breaking for them but at the same time it is so comforting you aren't completely alone. Some days it can feel like a lonely place. These are the times you have to remember the gift in the midst of all of this. I have been given the ability to appreciate life and make sure I'm doing everything possible to live it to the fullest and not take one moment or memory with my children for granted....

Riley seems to be feeling better today. She hasn't had a temp since starting the abx and actually ate a small handful of dry cereal tonight which is more than she has eaten all week. The sticky part is as of right now, almost 24hrs, her cultures have not come up positive. This means our treatment is working but we have no idea what we are treating.... not exactly a good thing. So, we shall see what the doc has to say in the AM. Should be interesting I'm sure! And at 1:30am we have to get labs so we'll see how much fun her line is today. Her labs were a little funky last night with her WBC count and H&H taking a pretty good drop from the day before as well as general funky "Riley Issues". So, again more of the same ol' wait and see game. Fun for now and nothing to special, WHICH IS ALWAYS GOOD. It is nice to be at Holmes with all my favorite people who know and spoil us so much. Much more laid back thankfully! I got some cut pics of Riley and Liam eating Cheerios together tonight but it's late and I'll try to get them up tomorrow. I need to sleep now since it will be time to work ohhhh so soon! Thanks to everyone that has been there for us and helped us get through this. You know who you are and how much I LOVE YOU!!!

Settled Back In

Good to be home, NOT... since this is not our home! Although most days you could seriously fool me. Thank god we have two different hospitals we go to or I would really be confused.

Riley Seems to be feeling pretty bad tonight which is actually a good sign to me that we caught this nasty bug just in the nick of time. I did manage to pull blood off of her line to get a culture. Let me tell you I felt like I deserved a prize when it was all said and done. I still don't know what we are going to do about that line. They keep going back and forth on wether or not to TPA it. All I know is I don't like the problems we are having or that no one knows why we can't get blood off of it. God knows we can't keeping attemting peripherial draws off on her to get labs!

We also are playing the lovely abx dance with Riley. She is greatly narrowing our choices between what she is allergic to and what just plain doesn't work we are going to end up in big trouble one day. She has allergies to penicillin, sulfa's, and all the mycin's not to mention she doesn't tolerate rocephin (it gives her gallbladder sludge) and the list's go on.... Apparently what we have been using at home hasn't been working either. So, thankfully Riley has a wonderful caring pediatrician who put a lot of thought into concocting this new formulation and went with some of our oldy but goody abx. Our kill alls, since we can't afford (and wont!) loose this line!

I need to get some sleep so I can get up in a few hours and go out and work! Ohhhh yeah, LOL. Hopefully it will be a nice uneventful weekend in Hotel HRMC (Holmes Regional Medical Center for my far away friends :). Check out a few photos from today...

After all the labs and Cathing and everything else I

think she finally gave up, BUT only for tonight!

All snuggled in, just like home....

Sighhhhhh, I give up :)

Riley in the Bath! Chewing on Something...

Riley playing in the bath earlier today

Riiley Strikes Again....

Well those pesky "fevers"/autonomic issues have been occurring through out the week still. I say "fevers" because they aren't really going up and they go down on there own and they only go to around 101. In Riley it usually means something though, this is just her cycle. She is very happy and acts as if nothing is wrong but her autonomic issues will tell you otherwise. After what happened a few weeks ago we can't risk it and it's Fri. evening of course so getting IV abx for home is a joke. So, Riley will be going back into the hospital tonight. At least we are going to be able to put her into Holmes and I can still work tomorrow.....

To further complicate the issue Riley's Broviac has been misbehaving and not giving us blood for some reason. It's working awesome, just not giving blood. We tried to get labs yesterday and nothing and her Dr. who draws our labs every week for us tried again this morning and nothing. It's a big issue because we need a culture off of it. If she is growing a bug or the staph is coming back we would need a culture from the line to find it before it gets into her entire body and makes her extremely sick like last time. We are going to put some medicine into it to try to dissolve any clots that might be causing this to happen.

I am praying that we are being proactive here and get this taken care of before we have major issues again. I so want Smiley Riley to stay! Well it's just another day around here as I say! Cooking dinner one minute then Dr. Ulrich is calling the next and it's time to pack up and go. Actually, I should be doing that! LOL :) I'll update you when I know more or anything for that matter. Thanks to everyone who leaves your comments and thinks of us. It's always encouraging to know how much everyone cares!

The News We Were Waiting On....

Well I got the call I had been waiting for and we got some "hopefully" quite exciting news! Here's a little background first:

A few months back her GI group started having a morning meeting everyday in order to discuss all their patients in the hospital and to decide the best treatment plans etc. Anyway, apparently this is how D. Mehta(our GI doc) heard about Riley's infection and surgery being put on hold as well as her J-tube getting pulled out. All of this apparently prompted him to call Dr. Fortunato at Wake Forest in NC and try to get him to do the motility testing on Riley. One big issue was once we do the pyloroplasty we will never be able to get a true picture of how her gut functions on it's own and what her issues are truly caused by. Apparently he talked a good talk and Dr. Fortunato agreed to see her and do the testing! D. Mehta called me last Wednesday to tell me the good news and give me the number to call and set things up. I was thrilled since I had no idea about any of this so it was a wonderful surprise!

So, that leaves us with today. I finally heard back from his office today while I was at the ENT with Liam. They have scheduled her appt. for June 14 and her manometry testing will be on June 17. He is also waiting to speak with one particular doctor there apparently and they will also be doing some sort of testing having to do with her autonomic dysfunction. So, we still know there is a much bigger margin of error in the testing due to her size but mostly her moving around during the testing. But obviously they feel it will produce some useful info or at least we will have a chance since I'm sure D. Mehta would never put her through this otherwise. So, now we wait and pray we can walk our tight rope we know all to well to prevent any major issues until then. HA HA HA I know better than to even say that! Shall we say let's just pray we make it there! LOL

And now on to Liam... As I said we were at his ENT appt. today and discussed his ear tubes which had fallen out and also to review his CT scans of his sinuses. So, on that front considering Liam already got an ear infection before they were completely out and the holes hadn't even closed that is a no brainer, he will be having those replaced. He also had significant anatomical issues in his sinuses. He feels these are definitely contributing to his chronic sinus infections. So between his crappy immune system causing him to always get infections and then his anatomy being a problem and basically holding onto it it is no wonder he is always sick! So, Liam will be having his ear tubes replaced and sinus surgery... He says it's less painful than having his tonsils out and the recovery is about the same. If he wouldn't have gotten dehydrated last time we wouldn't have had any issues so since that shouldn't be an issue this time I am hoping this makes a significant difference for him. We are hoping to cut down on his infection by at least 50% and also for his sleep to improve since he will be able to breath through his nose now! His scheduler is supposed to call me tomorrow to give us our date. This should be interesting trying to get these two big things in during the next month should be fun as always. Better to be busy than board I suppose.

I think we are supposed to get the eval from Liam's behavior therapist tomorrow. That should definitely be interesting... We've only been waiting 2mo. to get it between her busy schedule and ours. Riley also has an appt. with D. Mehta(ie. Big Mehta) tomorrow. He hasn't seen her since shortly before the infection. We are kind of at a stand still right now for the next 4wks. She only eats a bite here and there if that and drinks a small amount of pedialyte. She is on 100% TPN and extremely happy about it and it's just nice not to see her hungry. So, I think this time for her belly to rest will be really good for her since we have been messing with it so much over the last few months. Lets hope tomorrow is a good day!

I better go get Ry's meds and TPN ready before she wakes up. We have no nurse today since I had to fire her yesterday after I caught her sleeping, sound asleep while Riley was yelling in her bed mind you, twice yesterday and she fed her chocolate pudding for lunch when she knows she can't eat that! She said she wanted it.... Omg she is 1 of course she wants it HELLO! It Doesn't mean her having horrible belly pain and problems later is worth it. AGGGHHH shoot me now! We are now left with 4 days a week with no nurse's again. I am beginning to wonder if this is a lost cause. Ohhh well, please send us some good nurse vibes this week. We have had our fill of crazy nurses for this lifetime!

Photos from Our Day

Check out some photos from our day today! As you can tell it was a great day. Riley did have a fever this afternoon but good or bad it seemed to be an autonomic thing so I'm just going to watch it and see what happen. As I said earlier, you just never know what tomorrow holds around here! I just got finished giving Riley's 12:30 dose of IV abx's and I'm off to bed. Thanks for checking in on us and taking the time to think of the kids.

Riley being a good girl while getting her antibiotics and bolus.

Liam just hanging out after swimming today

Riley trying to put socks on...

Chewing on brothers ear drops

Look at all her curly hair! She didn't get that from me.

So Good to be HOME!

Yes, we were able to make it home and even by around 4:30 thanks to out WONDERFUL TPN delivery man Brian who we love! He has been coming from Orlando every week to deliver Riley's TPN for about a year now and has grown to love Riley too. So, when I called to tell him we could leave as soon as he brought our shipment with her TPN and abx he changed his hurried to Tampa to get it and then changed his whole route so he could get there early. So, after I let Riley run wild in the nurses station, they quickly proceeded to get our discharge ready and us out the door, lol. We even made good time considering we got stuck in the launch traffic and all. Riley was SOOO happy to be home she couldn't stop walking around laughing and singing. Liam was in much better spirits too. We did have to basically overhaul the house once we got home. Between the sink full of week old dishes and trash that hadn't been taken out it was not a pretty sight add to that the 10 loads of laundry that needed to be done. When you leave like we do it's basically a mad dash to get together all the things you can't live without including clothes, meds, medical equipment and supplies so when you come home all 8 or so of these bags have to be unpacked and put away not to mention the 2 full boxes of new TPN, IV meds, and supplies... Add taking care of the kids and getting Riley's TPN, IV abx, reg meds ready and given and then getting her to bed we had a busy night. BUT, it is always so nice to be home it never matters. The caous in our life is sometimes easy to get caught up in but I always remember to stop and look around and find a way to be thankful because in out lives it could always be worse....

I actually lucked out today, when I got to work I found out they were over staffed so I was able to go home today and get a few much needed things done since next week we have a lot going on and I need to get a lot of things in order first. Liam is happily back into his normal routine and is at daycare playing with his friends. Riley is kind of status quo right now. We need to finish her abx which will be 2 weeks before we can talk about re-scheduling her surgery again. She needs that time anyway for her body to get stronger. We might have an opportunity to get some other things with Riley done in the next few weeks also but I'll know more on Monday or Tuesday about that hopefully and let you know then. Not that Riley getting that sick was in anyway a good thing but I don't think her body was in any shape to be having surgery last week and I'm glad we didn't weren't able to do it. I am a firm believer that everything happens for a reason.

So, for now we will hopefully enjoy the calm before the next storm. We always know something will come and we never know when. Riley usually has a small interim after a major illness/issue and we but enjoy times like this even more! We never let our guard down though since the next issue could be starting or happening as I type but you just enjoy ever moment you have.

Happy, Frustrated, and Exhausted....

Those would be the emotions of the day. While frustrated and exhausted is nothing new around here it was wonderful to have such a happy day!

HAPPY- Riley had the best day she has had in 5mo. today! It was so wonderful to see my happy little girl who couldn't stop smiling and laughing again. I really thought she was gone forever and had just turned into a wild toddler. With all the infections under control and her gut having sufficient time to rest all the while being on 1oo% TPN again has made an amazing difference. She was all smiles and playing and laughing with everyone who would stop and talk to her. I missed seeing her happy and feel so bad we let her poor little body get so stressed out for so long and didn't do anything before now. Everyone started convincing me all the little things going on were just her "new norms" and so I finally just started excepting it. This is why she is known as Smiley Riley and why she is so amazing!

Frustrated- As usual someone always has to mess up the plans around here. This is why I tried to push for her to come home today but for some reason no one seemed in to big of a hurry to do anything. For some reason everyone seems to think they can just scribble out a few scripts and send us on our way... They don't seem to realize orders have to be sent out 48hrs in advance to have things ready in time.I warned the resident when she was in at 6am to wake us up... Ya, didn't see her again for the rest of the day... All I heard all day was "it's under control" and "we took care of everything"... Well I called her TPN company at 4pm and they said they had no orders, not good! So, I went out and started yelling at some people and pulled out some favors from some of our Riley fans at the hospital and needless to say we will at least be getting home even if it wont be until about 8pm if we are lucky. That sucks since I have to work the next morning.

Exhausting- I'm sure you can imagine why. This all started very abruptly last Friday at midnight. Were Riley and I then spent a very long night in the ER and I then got her upstairs in just enough time to work my 12hr shift with no sleep. Right as the end was in sight her Dr. came up to me and told me we needed to transfer her since she was getting sicker. That was a very fuzzy night but it led into a long week. I haven't left Arnold Palmer since the ambulance ride here last Saturday night. This is another reason I was quite angry to find out we'll be getting home in just enough time for me to get her settled, get a few hours sleep, and go back to work. The house is a disaster I'm sure, since it always is when we have to leave under these circumstances.

At the end of the day all I can think of is the victory though! Riley is great, Liam will be happy when we get home, Wil is doing great, so this is all that matters. Life is good! All the rest will work itself out one way or another. It always does... I have 50 million things I didn't get to today but it will all be there tomorrow and it will eventually get done. It's sooo the little that matter in life.... ever smile, every hug, every happy memory. Always cherish it!

Just Another Day

I kind of threw this blog together forever ago knowing I needed a place to update people but never could find a good way to start it. I guess I'm just going to jump right in and here goes!

Over the past year I feel so grateful to have been given Riley and I learn to appreciate the new perspective I have on life every day more and more. Yesterday evening Wil, Liam, and I were sitting by the lake out front of Arnold Palmer relaxing. Riley had finally fallen asleep and we were enjoying being outside. When we were about to cross the road back to the hospital the Arnold Palmer ICU ambulance came around the corner to pull into the hospital. They had all there lights and sirens on and Liam thought it was cool. I told Liam that was the same ambulance that had come to get sissy when she was sick this weekend. He then says, "wow mommy that's cool, next time I'm sick I want to ride in that ambulance". I then tell him without even thinking you don't ever want to have to ride in that ambulance b/c it's only for really sick kids. Then I got the look... the one you get when just for that split second you realize you said how sick she really is, out loud. And he realized it too. It's so amazing how desensitized you can become when living in a hospital. Especially when you are lucky enough that your child looks almost perfect on the outside. I think there is also a strong unity among mom's with severely ill children. We may all seem rock hard on the outside but we all have our moments the ones where the reality of the situation hits you. The majority of the time however we just go on being as strong as ever because that is just what you have to do to get through this....

Riley had a good day and a wonderful morning she woke up smiling and having a great morning. As soon as the large dose of IV benadryl and tylenol got in her she went wild and proceeded to pass out for the morning. We almost made it through her IVIG without incident but 3hrs into it she woke up shaking and miserable. She ended up getting a temp of 102.6 and slowing the infusion and it still didn't help. It then had to be stopped but it's been about 8hrs and we are going to try to slowly start it again. She definitely needs every bit of it!

We are now fighting to go home. Everyone is trying to drag there feet for god knows what reason but we are ready to go! Liam gets so wrestles with the whole hospital thing and lets face it it's not a fun place for a 3 year old who isn't sick to live. But at the same time he is getting very upset when he's not here with us so we really have no choice. I cornered the GI on call and MADE him promise to have us out of here by Fri. at least. I had hoped for tomorrow but I suppose beggars can't be choosers... We are just happy another crisis has been diverted and we all made it out with no lasting effects and maybe we can breath a small sigh of relief until the next time at least! So, I'm off to go tuck Liam in at the Ronald Mcd house and then snuggle right into my hard and loud hospital cot. Just another day....