Top 5 things that men and women want out of a committed relationship

Yesterday our pastor preached about friends specifically lovers. Some of you may say, "Why did he talk about that in church?" Well, because God has some specific things to say about committed relationships in the bible. The book of the Bible he specifically focused on was The Song of Solomon. I won't go into details about the sermon but he did make reference to the top 5 things that men and women want from a committed relationship. I can't remember the author's first name but his last name was Haley. The list was very interesting to me and as he said you may find things on the men's list that apply better to your relationship and vice versa, but I would say that this guy pretty much hit the nail on the head. Here's the lists.

His Needs
1. Sexual Fulfillment (Does that surprise anyone?)
2. Recreational Companionship
3. Attractive Spouse
4. Domestic Support
5. Admiration

Her Needs
1. Affection
2. Conversation
3. Honesty and Openness
4. Financial Support
5. Family Commitment

Just thought I would post this because it really made me think if I have been meeting the needs of my husband lately. It's easy to forget about your relationship with your spouse when you are sooooo busy taking care of your kids especially one with special needs. It was very ironic that he and I were having a conversation about how we never have time for ourselves anymore. We never go out on any date nights anymore because everyone is too afraid to take care of Liliana because she has an NG tube. Then we go to church on Sunday and our pastor preached about this. We also talked about negativity in our relationship and that we need to support each other instead of tear each other down. It's all about making deposits in the bank of love/relationships instead of constantly making withdrawals. My challenge is to try and think before I speak and try to find ways to keep the spark in our relationship so we can be a strong couple and family. Let's face it...if Bill and I hadn't met there wouldn't have been any Gwyneth or Liliana and we love them both very, very much! I'm thankful for that!

Webster's Dictionary says...

Webster's Dictionary describes the word retarded like this:

sometimes offensive : slow or limited in intellectual or emotional development or academic progress

I just finished reading a bunch of blog posts about the dominant topic of the day, which if you are not aware, it is spreading the word to get people to stop using the "R" word. Is Webster's Dictionary trying to get on the bandwagon by saying "sometimes offensive" or what message are they trying to portray? It makes me wonder?

I saw a lot of really good posts out there and I don't know if I can adequately say anything different about this topic. As I was thinking about this today it does put things into perspective for me. Many times I know I have ignorantly used the "R" word prior to having Liliana. I think having a child with Ds just magnifies the use of this word even more and has truly opened my eyes to the damage that this word can do.

Before becoming a teacher I worked for an assisted living organization called Rescare on the east side of Cleveland. I worked with many different individuals with many different diagnoses. I remember taking them out in the community and proudly going into stores and restaurants not even caring about what other people might say or what strange looks I might get. I also have a cousin that passed away several years ago who had Cerebral Palsy. He was such a great guy and was always a part of all the family events we had. We never thought of him as being any different than anyone else. So, one would think that I would literally cringe when I would slip up and use that word prior to having Liliana, but I didn't. This makes me sad.

I know that the bible clearly tells us what we should and should not say. Ephesians 4:29 says, “Let no corrupt word proceed out of your mouth, but what is good for necessary edification, that it may impart grace to the hearers." With that said I know that I now will strive to stop using that word and will pass that same message along to others so that they too can make a change. God never intended for us to use that word to describe our children. Ds children are loving, caring, kind, smart, inquisitive, athletic, compassionate, intellectual, fantastic individuals that deserve to be treated with the same respect as others. What does this mean? It means one thing and that is we need to give up the use of the "R" word because God doesn't make junk! Have a wonderful day!!!

New week new challenges? I'm tired!

Well, here we are starting another week. I didn't post all last week because I felt like I would just be repeating myself. Things are pretty much the same as far as Lily goes. We have to make our way down to the clinic tomorrow to see Urology and Endocrynology. I hope I can find everything ok. Sometimes I feel like I'm lost in a Where's Waldo picture or something down there even though we spent three months there practically living there. Liliana sees the Urologist to make sure that her kidneys are ok since she spent so much time in the hospital on a folley catheter and also had a UTI while in there. She has to see Endocrynology for her thyroid. Her thyroid was checked while she was in the hospital but since Ds kids can have issues with their thyroid and she was having feeding issues they put her on synthroid. Hoping that maybe she will be able to get off of that stuff because it is such a pain in the rear to put through the tube. I have to crush it up and add some water to it then push it through the tube. I'm sure someone out there can relate?! I tell you the whole med thing through the NG tube is wearing me down. We had more problems with her NG tube this past week then we have ever had with it. Friday I almost had to miss my own doctor's appointment because Lily's NG tube was clogged. The stupid thing hadn't even been in for a whole week! The G-tube is starting to look so much better, let me tell you. Anyways, I had to call Bill and have him come home from work so we could just replace her NG because every time I would start up the pump after flushing her tube and repriming the pump tube and basically trying every trick in the book the pump would eventually stop and give me the error, "NO FLOW OUT!" Do you know how frustrating that is when you are just trying to feed your hungry child? It happened to us again Friday night 3 times after we got her continuous night time feed going the pump alarmed and we had to go in her room and flush the line again to get things rolling. So frustrating! I just wanted to go to sleep! After a lot of thought and coming close to throwing the pump out the window we figured out that Lily's tube mainly gets clogged after we give her her morning and evening doses of her antibiotic Bactrim. Anyone that knows what the consistency of bactrim is knows that it is thick like Children's motrin or tylenol. It's also very sticky! So I suspect that the bactrim is the culprit here. How in the world does anyone expect you to push this junk through a tiny NG tube. 5" french to be exact! Well, we have one little trick we use which is adding water to it, only like a few cc's to help dilute it enough to get it going into the tube. This still isn't a permanent fix, hoping urology takes her off that stuff! Oh! another NG blunder this weekend happened on Saturday morning when Bill calls me about 8:30Am to tell me that he can't get anything to go in and if he can't I would need to come home and help him replace the tube. Funny thing was I was at a Kiddie Closet sale and did not know my phone rang when I realized it did I was in route to go to the hair salon to get my hair cut and colored. I told him it was a good thing it happened when it did because there would have been no way I could of left the shop once she started coloring my hair. Lucky for him with some warm water, a toothpick, and a little perseverence he was able to get the job done so I didn't have to go home. So as you can see this was the most irritating part of our weekend, good thing it was balanced out by Bill getting more work done on our dining room and we were able to get out and go to my niece's second birthday party! Whew! That's why I am so tired! I'm sure I will have many more NG tales to tell in the future. Well, I better turn in for the night. Night, Night!

Sunday, Sunday!

Oh, here I sit another Sunday morning and we are not able to go to church because Liliana is an infection risk! Bummer with a capital B! It is so dreary outside today too! We were spoiled here the last two days with the warmer temperatures and hints of sunshine at times. Well, hopefully that means spring is around the corner, right? On a different note...our gastro appointment on Friday went very well. Dr. Mohr was so pleased at how good she looks! We are going to continue with the 65cc feeds 4 times a day and over the next couple of weeks try to increase it to 70cc and then her night time continuous feeds will stay the same. She also talked to me about how much Liliana is taking by mouth. I told her that I have been working with her at least 2 feeds a day with trying to get her to take at least a few teaspoons of stage 2 baby foods by mouth. She is doing ok, but not as good as she should be yet. She then told me about the dreaded thing that I did not want to hear. "Well, if she continues to struggle to eat by mouth we will have to consider putting a g-tube directly into her stomach." Whoa! Wait! No! Not my Liliana! This is what I'm saying in my head. After listening to her talk some more she told me that we will give Lily at least 3 more months to prove herself. If by June she is still not eating by mouth than she will have to come in for the g-tube. It sounds fair?! So now I am talking to Lily and whispering in her ear that she needs to eat! Over and over again I repeat those words because if some way we could avoid having to get the tube it would be great! If we have to life will not be a total bummer, actually she made some good points about how a g-tube is much easier for the child and the parents than an NG tube. It all makes perfect sense, but being a parent and wanting her to succeed makes me say, "Please Lord let her catch up and start eating like a big girl!" So for all you prayer warriors out there please pray specifically that she will start to get the hang of eating by mouth in the next 3 months and we won't have to go through another surgery, even though it won't be as big a deal as the open heart surgeries. On a different note, Bill has been painting our dining room and he finished the ceiling yesterday. Man, what a difference! He and Gwynny went to Home Depot this morning to pick up the colored paint for the walls so he can start painting today! I will have to post a before and after pick for those of you who may be interested. Working on painting and fixing up our house has been very therapeutic for us, especially Billy. Since we are stuck in our house for the time being it gives us something to be proud of and get excited about! Believe me it has been a long time coming that this place has needed a facelift! Well, hope everyone has a super Sunday and I hope the time change hasn't messed with too many people! Later!

A New Day!

Liliana actually woke up yesterday appearing to be a new baby. She seemed more alert, less irritable, and definitely more herself. She has been reverting back to her old behaviors. She is holding up her hands and looking at them again, she is putting her hands together, and she has made her voice known with wonderful little cooing sounds. It is precious to listen to! Yesterday PT came to the house and today our Intervention Specialist came and they both said she still needs work but they were very happy with how well she was doing and how much she had retained given all she had been through. Our biggest hurdle definitely is getting the strength to hold her head up and getting used to being on her tummy. She hates that! Imagine how much this has boosted my confidence in her! I feel like I am getting my beautiful baby girl back and she is back and ready to learn! Yeah Liliana! Tomorrow is our big trip back to the clinic for follow-up with the cardiologist so I will keep you all posted.

Life on the Homefront

Well, first let me say I am sorry I haven't posted sooner so that everyone knows that we are all right, but we have been hanging in there. I feel like I have been going nonstop. I actually feel like a 24 hour nurse. It seems like there is very little time for much else except giving meds and starting feeds for Liliana. I am so jealous of all you mommies out there that have babies that can eat from a bottle and aren't on any medications or are on very few. I just keep telling myself that it won't be forever. It could be worse, she could have came home on oxygen. Just like a mom worries about their child I am very worried about Lily. She seems so delayed in all areas. She can't eat like a normal child. Her feedings through the NG tube have been both good and bad. At least once a day she starts gagging during her feed and spits up both mucos and formula. She also was constipated for two days and I ended up having to give her an enema to help her go. I just feel so bad for her, she has been through so much! She doesn't really smile, in fact she has been acting almost paranoid. Every little thing scares her. I mean even putting her on the changing table of my pack in play scares her and she cries. She does that same thing when being picked up sometimes. When she is sitting in the bouncy seat and it starts to bounce, sometimes she cries and throws her arms out to the side like she is going to fall. I also feel like she doesn't really know me because for the majority of the 3 months she was in the hospital I was not able to hold her. I feel like she totally lost that need for bonding with others, especially me her mommy. I hold her and it's like she is looking at me as if I am a stranger. When I talk to her and try to calm her down she usually cries or gives me her pouting lip. It is so heartbreaking. We had our first PT visit last Wednesday, and we have another one today. She is so low. She can't hold her head up very well at all and she absolutely hates being on her belly. She is almost 9 months old folks! I read other peoples blogs and their babies are doing so much better than Liliana. Some of them also went through open-heart surgeries. It just has to get better, right? I just want her to be at least a little bit further along than she is. I am very concerned about her eyes as well. They have improved since she is basically off of the heavy duty narcotics she was on but she still has issues. I wonder just how far she really can see? They did a bedside exam of her when she was in the hospital and told us that she can see but that they would need to do further testing in their office. I need to get her in there asap I guess. Also the neurologists examined her and said that she doesn't appear to have a neurological disorder but the moving or roving eye movements that she has are probably nystagnos (sp?). So I guess that was good news, but I feel like it is always something. We go back to the clinic to the cardiologist on Friday and I definitely have to discuss all the issues we are having with them. We just need a lot of prayers and support to get through this one day at a time. I will keep everyone posted as much as I am able. More later...

The Results Are In!

Took Gwynny back to the doctor today and found out she has a staph infection and a double ear infection. How in the world she got the staph infection is beyond me. We actually think she probably got it at the hospital while visiting. She is now on a different antibiotic for the staph infection and continues on the other for the ear infections. It's crazy! The positive side of everything is that Liliana continues to do well and after talking to the doctors at the clinic she will be able to come home tomorrow. Well, it sure is hard to be optimistic anymore. I am really sick and tired of all the disappointment. It seems like we just keep getting handed more and more junk on our plate. We really have had enough. I know that God knows how much we can handle but we have had more than our share of heartache. Well, I better get going to prepare for tomorrow. So much to do...

Hug Me, Hold Me, Kiss Me!

When I arrived at the hospital today Liliana was sleeping. She was having a little trouble with her oxygen dropping so the resident came in and checked her out but she just is going into a very deep sleep. The nursing assistant and I got her up and gave her a bath. She hated that! We washed her blond head of hair and I put two little clips in it. She looks soooo cute! We then put on her red onesie from Aunt Libby that says, "Hug Me, Hold Me, Kiss Me!" Everyone that has come in to see her has commented on how cute she looks. So then I had to have a photo shoot. She was pretty worn out by the time I was taking her picture so that is why her mouth is wide open and she looks a little out of it. Can't wait to bring you home so we can do just what your shirt says, "Hug You, Hold You, and Kiss You!"

Our Valentine Couch Potatoe

Anyone that has been following my blog knows that you never know what is going to happen from one day to another with the Rees clan. Today was no exception. Let me start out by saying that Liliana is doing very well and is just waiting to come home. We can't complain. On the other hand, Gwynny continues to struggle. She has been sick all week with a cough and off and on fevers. We took her to the doctor on Thursday and they put her on an antibiotic just to be safe and also because Liliana is expected to come home soon. The doctor suspected it was just a virus but sent her to get a chest x-ray just to be safe which came back just fine. Thank God! Upon waking today Gwynny came to Bill and I crying complaining about her bottom hurting. Long story short, she has a huge red spot on her one butt cheek and the center is almost purplish red. It definitely looked like some type of infection to us. Bill and I were very concerned. I phoned the pediatrician as soon as they opened and they were able to get her in around 10am. The doctor took a look at it and put her on Benedryl for the allergic reaction part and a different antibiotic for skin infections. She also did a culture and we dropped it off at the lab so they can determine exactly what she has. We have to wait till Monday for the results of that. Depending on what we find out from that will determine whether or not Liliana can come home at the beginning of the week. The doctor kept asking us if she got burned by bath water and we assured her that that did not happen. I swear she made us feel like such horribly bad parents, like she was going to call children's services on us or something. Anyways, she then thought that Gwynny probably got bit by something, like a spider. I'm thinking what in the world would be alive and lurking around mid February? If anyone has any input on that please feel free to leave your comments. We were so bummed! I know that God has a reason for everything that happens so I am just trusting that his will be done through this whole thing. We were so excited about spending Valentine's Day weekend together as a family for the first time. Well, it's not going to happen in 2009. So, Bill is at the hospital visiting with our little valentine angel and I am at home taking care of our other coach potatoe valentine. Hopefully, we will be able to at least order some take-out and enjoy a quiet evening at home. Happy Valentine's Day everyone and God Bless you! Thanks again for all your love and support as we have gone through this difficult time in our lives.

Who Threw a Monkey Wrench in the Plan?

I will tell you who threw a monkey wrench in the plan...Gwynny.  Yes, Gwynny is the reason that Liliana is not coming home today.  After telling the doctor and nursing staff about Gwynny having a terrible cough and fever they decided that if Liliana were to go home today that it could be detrimental to her health.  I totally agree with that but I am still disappointed.  Another weekend to spend here at the hospital...WhooHoo!   I mean that sarcastically.   Happy Valentines Day!  Well, I won't have a pity party for myself.  Today was pretty uneventful.  Since Gwynny wasn't feeling well I stayed home with her so Bill wouldn't have to take another day off from work.  We want to try to save his vacation time for the day she comes home and hopefully to take a family vacation this summer.  Bill is convinced that all his vacation time will have to be spent on taking care of sick kids.  I wish he wasn't so negative sometimes about it.  I came up to hospital this evening to see our little angel.  She is doing great!  Looking good and eating good too!  I can't wait till I can take her home and put her to bed in her own crib.  I am bursting with anxiety for that day to finally come.  I hope it will be soon.  

No More O2!

That's right! She is off the oxygen support! Strange story behind that one...the nurse that had her Sunday night into Monday morning weened her off the 0.1 liter she was on over a 2 hour period early Monday morning. When I came in on Monday she still had the nasal cannula in her nose so I assumed she was still on the O2. As it turns out, they left the cannula in just in case she would need it turned back on, and the O2 was off the entire day Monday and the day nurse never said a word. The same nurse that had her Sunday into Monday was back on Monday into Tuesday so I talked to her before I left that evening. She told me about how she had weened her and she was shocked when I told her she was still on the 0.1 liter. She said, "You're kidding me! I weened her off it last night!" Turns out that the oxygen really was off the entire day Monday so she was officially weened! Talk about a lack of communication. I often wonder about this side of the hospital. Anyways I am thrilled beyond belief that she is off the O2! We will not have to worry about where to store the extra tanks and all the other safety precautions that you have to remember when we go home. Yeah! Oh! and did I mention that Liliana is scheduled to come home this Friday! Yep! I didn't stutter Friday! We can't say that too loud around Lily though so she continues to stay on track. LOL! More later...

Don't Scare Me Like That!

Last night we had a bit of a scare. I was out with my friends at a Scrapbooking Crop and I called the hospital around 8:30pm to check in on Liliana. The nurse told me that she was ok, but really fussy for some reason. We talked for a few minutes more and I asked her what Lily's heart rate was. She said in the 150's. Typically when Liliana's heart rate starts to creep up it means she is about to spike a temperature. I asked the nurse if they had taken her temp lately. They just so happened to be doing her vitals when I called and I requested they take her temperature rectally. Sure enough she had a temperature of 38.9 (can't remember what that is converted but I know that it is high). The nurse was like, "Yep Mom you were right." What do they always say about mothers...Mom always knows best. Well, she told me that they would give her some tylenol and not to worry about coming up because they had plenty of staff here to sit in with her and just to call back in about an hour. So I went back to my scrapbooking a bit worried but continued on until it was about 10pm. This time when I called the nurse told me that she was settled down and asleep. Ahhh! That sure eased my mind, but being a mother I just needed to call back one more time before I went to bed so after I left the crop I called again around 11:15pm in route home. They say three times is a charm, well it wasn't a charm but she definitely was not a happy camper. The nurse told me she was stable but that they had to increase her oxygen and that she was once again irritable and her heart rate and breathing were slightly elevated. I decided after going home and attempting to talk to my half asleep hubby to come up to the hospital. When I arrived she was asleep. She slept most of the night, but I didn't. To make a long story short she had received two different vaccines over the past two days and the docs and nurses are thinking that she probably had a reaction to them. They don't want to rule anything out again so they sent off cultures again just to be safe. She also has a very swollen little thigh were she received the shots so they are using hot and cold packs to help bring down the swelling. They turned off her feeds last night and put her back on IV fluids but this morning they are putting her back on NG feeds continuous for today. Wheee! That is it in a nutshell! What a whirlwind ride this entire journey has been. At least I think we are still headed in the right direction.

If at first you don't succeed, try, try, again...

That's right folks! Strike one, strike two, strike three times is a charm! That's my version of that saying or at least I hope three times is a charm. Let me explain. We went on our journey to the new improved part of the clinic at approximately 2:15pm to make our way over to Radiology to have Liliana's gastric study done. The total time of the test was about 1 hour once they got her suited up in her little vest to protect her from the radiation. She was such a good girl during the procedure. She didn't make a sound. She just laid there and chilled out. When all was said and done they will have to repeat the test again on Monday. They calm that the NG tube that they put in today was placed too far down in her stomach and may actually have been in her small intestine so they didn't get good results. They did say the fact that the first time around they put the solution in her corpac could actually give them some good information they could use for the study so I guess it wasn't all in vain. Poor Liliana, she just can't seem to get a break! Now we are back in her room and she got a diaper change, a dressing change on her line in her leg, and they removed the NG tube until Monday when she goes back for the study again. Wheww! It has certainly been a busy afternoon here at the clinic. I hope it is a peaceful night.

On the Road Again...

Here I sit so downhearted, waiting to leave the place where everything started. Everyone in the PICU has been so great, but now it's time to graduate. A few more hours and away we will go, off to M40 to the pods that blow. The accomodations may not be great, but we'll make the best of it anyways. It's one step closer to Liliana coming home, to laughter, and good times, oh the memories we'll hold. We've made lots of friends that we'll never forget. We'll come back to see them on that you can bet. It's a happy, but sad time. A lonely, but glad time. We will miss our PICU nurses and docs but we will not forget how they helped us a lot. So off we go to the Pods in a rush, please get us home soon before our brains turn to mush. LOL! How'd you like my poem? Hee Hee! We are actually in Pod #3 and I made sure that they put us in one where I could at least see the tv from the couch. I plan to spend more time here if I have to because I want to make sure we do not have a repeat of what happened December 1st. I have insisted that some of the nurses that I am not too fond of not take care of Lily and they were really good about it. I also know what I can do if I have any issues with any of her care and I want to have a PICU nurse or resident check her out. This has been a big relief to me since last time no one said anything about. Strange. Well, on another note Lilians looks great! She is holding her own both with her oxygen and her heart rate. She shows no signs of distress. They increased her formula to 30 calories per ounce and she has been tolerating fine. So hopefully this will be our last stop before going home. Thank God!

One More Day in Paridise

Today has been an interesting day so far. Arrived here at the hospital around 12:30pm and Liliana was bright eyed and bushy tailed. She is looking very good these days. They have completely turned off her milrinone (heart med) and they want to watch her at least 24 hours to make sure that all is well. The plan is she will graduate to the Step-Down unit tomorrow as long as she continues to do well all day and night. She will be put on a strict med regimen to ween her off the heavy duty drugs they had her on. That regimen will have to be followed even when she eventually goes home. I came here today thinking that she would be moved because of all the talk yesterday but we get to stay one more day. As one of the nurse's here put it, it is bittersweet. That is a good way to explain it because the wonderful nurses and doctors here at the PICU have become like family to us. I wish she could just graduate from here to home but you can't always get what you want. On the other hand going to the Step-Down is just one step closer to going home.

Ooops I did it again!

Man, can we ever catch a break! Liliana has looked great all afternoon and now she spiked a temperature again so the nurses are back in here culturing everything. Dr. Goldfarb the infectious disease doctor came by and at first she said she was really pleased with how she looked until our nurse Steph told the docs that she had a temperature of 38.8 axillary. Bummer! Back to square one! Hopefully it's just from the trauma of everything besides the fact that she has been extremely active all afternoon like a little cheerleader! Well, I am hanging onto the fact that she looks good and her stats look good as well. It just has to keep getting better.

Free At Last!

Well, today was a glorious day for Liliana! When I arrived at the hospital this morning I was told that they would definitely be extubating (removing the ventilator) today! So far she is doing really good! Even Dr. Mc'Hugh came in and said, "She looks great!" He then jokingly said, "It's all me!" Ha Ha! Needless to say we are ecstatic! We are crossing our fingers that she continues to do well off the vent and makes tiny steps in the right direction. Dr. Mc'Hugh and Davis both assured me that nothing will be changed with her medications right now. They also have her on high flow oxygen for support. They want to give her the best chance possible so they don't want to push her too fast. That is completely fine with me. When she was pushed too fast before she failed. Daddy and Gwynny will be coming up later to help celebrate with me! We also got a visit from Kathie C. which was unexpected surprise! Yeah Lily! We are so happy we are getting our baby girl back. It has been a long time coming.

Anticipation!

Today was an eventful day at the PICU. Got to see baby Bayla in her cute little hat her sissy made for her, and I got to meet little Aiden who also had his surgery this week. Both of them are doing really well so maybe some of their good fortune will rub off on Liliana. Lily had a good day today. No fevers, (knock on wood), no positive cultures (knock on wood), and she is tolerating being weened from the vent little by little. Her color looks good and she is tolerating her feeds and they even were able to go up a little on those. Now for the plan...the plan is to try to extubate her on either Monday or Tuesday if her lungs look ok and she does not spike a temperature, or grow any more positive cultures. As the Nurse Practitioner told me, "We want to give Liliana the best chance possible of making it when she gets off the vent. This is why we are trying to dry her out as best we can before we try." We are praying that she continues to stay stable. She really needs to get off that 'ol ventilator! She has been on that thing since December 1st! Can you believe it! Time flies and I feel like it is moving along and I am missing out on the best days of my babies life! The time when you want to hold and play with them. The time when you want to dress them up cute and have a photo shoot or take them out and show them off proudly. It really stinks and it makes me feel very sad when I think about it for very long. Well, for now I will just settle for holding her whenever the nurses are willing and able to let me when I visit Lily at the PICU. I am most happy that my little girl is alive and lives on to fight another day!

Thank You Everyone! We Love You!

I would like to start out today by saying "Thank You" so much to everyone that has made a donation to Liliana, or helped out in one way or another. We have been so fortunate to have cash donations, help with childcare for Gwyneth, restaurant gift cards, boxes of food, and gas cards. The generosity of so many people has just blown my mind! We are so blessed and it has helped restore my faith in the fact that God will supply all my needs. We also are thankful for all those that have faithfully been praying for Liliana. Those faithful prayer warriors out there, and you know who you are, should be commended for your willingness and diligence in praying for Liliana on a regular basis. God recognizes your faithfulness and we do too! Thank you! Now about Liliana...I got to the hospital a little late today because I had to take care of a few errands and the nurse said that Liliana was beside herself this morning. Just crying and wiggling and carrying on. She had to give her some chloral to calm her down. Part of the problem is they are trying to ween her off of the morphine and she obviously has become a bit addicted to it since she has been in here so long. They have not changed any of her vent settings, but they did remove her folly (sp?) catheter. She has been having problems with her belly swelling up and not tolerating her feeds. They have stopped and started her feeds several times over the past few days. They are not sure exactly why she is having so much trouble but they have put her on a med called regulin (sp?) to help her digestive tract move things along. All her blood cultures for the infection continue to come back negative so we are thrilled (knock on wood)! They were even able to take her off of some of her antibiotics since the cultures have been coming back negative. YEAH! I hope I won't have to eat my words since I am posting this on my blog. The surgeon Dr. Mavourdis was in today to see her and so was our favorite cardiologist Dr. Qureshi. Dr. M said that her heart still looks good we just have to get her to start tolerating her feeds. Dr. Q pretty much said the same he also added that they would be checking her thyroid as well, to make sure everything is working ok because that could be contributing to her digestive problems. All in all Liliana is making progress slowly, but surely.

Two Steps Forward, Three Steps Back

Arrived at the hospital around 12:30pm with Gwynny and Billy after attending a very special children's program at Christ the King church. They had a live nativity scene with a real donkey and sheep. Gwynny's friend Jason was a shepherd and all she kept saying was, " Where's Jason? and Where's the Baby Jesus?" She was so obsessed with the real Baby Jesus that she didn't want to go up and pet the animals afterwards she just wanted to see the Baby Jesus. She eventually changed her mind when Jason came over and went with her. Anyways, when we got here today we were informed that Liliana had spiked a temp overnight and it got to the point where they had to give her paralyzation medication so they could put ice packs around her to bring down her fever without her shivering. Her blood pressure has been on the high side as well. Her liver is enlarged again and her lungs look more wet today then they did yesterday. They increased her lasiks to get some of the fluid off and are starting her on another round of antibiotics to cover if there is any infection going on. They also said that her glucose levels are bit high so they are giving her insulin to take care of that too. It is so disheartening. Just when you start to talk positive about Lily things take a turn. I feel like I am jinxing her or something. We are mentally drained over all this. My stomach is killing me too. Something has to get better here. We need some hope.