tag:blogger.com,1999:blog-350241072024-03-07T17:12:40.129-06:00Life with GraceMy blog about life as single mom to a sweet girl from ChinaJamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.comBlogger413125tag:blogger.com,1999:blog-35024107.post-58949670661042626402014-08-09T09:57:00.004-05:002014-08-09T09:57:59.882-05:00FriendshipRecently, I was able to reconnect with one of my most favorite persons in the whole world. She was talking about her blog and she reminded me how I haven't updated mine in a long time. She was talking about the therapeutic aspects of blogging and I remembered how much better and lighter it felt when I would blog. I don't think this awesome friend realized how much our visit yesterday meant to me. I have sort of been like a bear in hibernation. I've kept to my family and my cave. I've accidentally pushed most of my other friends away. Thank God for my bff who keeps tabs on me and calls me at least once a month despite our busy schedules and our children. I wish we could see each other more as well but my goal this year is to see my friends at least once a month. So, thank you awesome friend for visiting with me and my child and making the best banana bread ever! I think my dad running into you at the mall was truly divine intervention.<div>
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Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-77361431460505935562013-02-21T15:16:00.001-06:002013-02-21T15:16:40.103-06:00Hoping to go to CHOP this yearMy girl is doing pretty good. We have noticed that she does poop out a little faster than before and that she has been having more blue lip days after a lot of activity. We aren't quite sure why. She will be having a heart catherization done sometime this year. Other than that, she really is doing remarkable well which is a good thing. I am trying to get us to CHOP (children's hospital of philadelphia) because they have a single ventricle survivorship program. It is multidisciplinary which means it's a team of doctors (GI, cardiologist, etc) who do their tests, talk about her as a team and then talk to us. I love this approach (it's like middle school teaming which I highly recommend). I just want to be proactive about her health, especially when it comes to the other body systems. We heart parents tend to be cardiac centric which is good but when you change one body system, you affect the others because our systems are so interconnected. I read this article that basically said we are letting our heart kids down by thinking the fontan is a fix. It is in fact palliative which means it's temporary, like a band aid...it isn't a cure. It was hard to read that 1 in 4 or 1 in 5 fontan kiddos don't make it to their 20s. I knew it, but didn't...it's like the elephant in the room...nobody wants to tell you the reality but it is staring at you in the face. I think that is why I have embraced the carpe diem attitude with my girl. We literally do have to seize the day because we don't know when something could happen. I mean it could happen to any of us but with my girl I know that we most likely will have a limited time in comparison to other kids her age. However, we don't plan like it is. We were talking the other day of children. She wants to be a mom. She said she was going to be a mom and her friend, D was going to be a dad but they weren't going to be married. I asked her where the child was going to live and she said they were going to share and live next door to each other. She also said that when I get too old she'd drive me around as long as I teach her to drive first. I made her pinky promise that when I get old, she was going to take care of me and not throw me in an old folk's home. She said we were going to live together forever. That should be interesting when she's in middle school. I should record it and play it for her then. <br />
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Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-28874058706331655352013-02-14T13:19:00.000-06:002013-02-14T13:20:39.810-06:00Happy Valentine's Day<div class="separator" style="clear: both; text-align: center;">
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Today, more than any other day, I stop to remember my sweet girl's beautiful heart. She has had a great and healthy year so far (knock on wood). She did have to get two cavities filled (without any anesthetic...she's so tough...she's my hero!) and a crown (done with a little gas) a couple of weeks ago. I'm so thankful to all of the wonderful family and friends and medical peeps who have really helped us these past several years. <br />
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We did see the cardiologist the other day and he said everything looked great. Our concern right now is that her stamina level has diminished and that she gets blue lips after major exercise and she struggles going up a second flight of stairs in our house. This started around the Christmas holidays. It looks like there is going to be a cath soon but we are also trying to go to CHOP (Children's Hospital of Philadelphia). They have a single ventricle program that would really be beneficial for us. The kicker is whether or not my insurance (an HMO) will help defray the costs. I am just going to put it in God's hands and He always figures something out for us. I'm not worried. Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-65055770737854078792013-01-17T13:29:00.000-06:002013-01-17T15:48:39.543-06:00A Long, Long, Time<div class="separator" style="clear: both; text-align: center;">
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I haven't blogged in a LONG time. It's not that I haven't had a lot to say. I have been just kind of flying under the radar, staying to the mantra of "Keep Calm and Carry On!" Life really hasn't been super crazy. We had a great summer and took a nice beach vacation. We've stayed relatively healthy (knock on wood). Our school year started without a hitch. Gracie loves Kinder Ready. She can't wait to start Kinder next year. She turned 5 in December and is growing so fast. It's crazy what oxygen can do for a person. We got a new family member in late December. A little 4 yr old dog named Peppa who G loves! Things really seem to be on an even keel for once. Of course, I say that as I wait for the cardiologist to call me about G's liver function test results which I know are still going up. I'm not quite sure what will be the outcome or result. But other than that little bump, life is good. I'm thankful that I'm not in a hospital with my daughter. I'm thankful we're home and happy. G can play outside with her dogs and can has the energy to run around and climb the playscape at McDonalds and Chuck E Cheese. Really life is good.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-86112610683392818242012-06-23T15:37:00.000-05:002012-06-23T15:37:39.502-05:00Dental NightmaresI know it has been quite some time since I last posted. It always seems that I'm running around, participating in life and when I want to write, I fall into bed exhausted. Many times, I'm putting my girl to sleep and I fall asleep before she does. So, things have been pretty good, in general. Gracie has been healthy until last weekend when she had a nasty sinus infection. She had complained about a toothache the week before and we went to the dentist on that Monday but he didn't think it was anything to worry about. Fastforward to last Sunday when she has a high fever, we go to the ER to be on the safe side and unfortunately, we have a dumb doctor...seriously...he asked me if my child was a Down's kid and I said, "No, she's Chinese" and let me tell you I wanted to add, "dumba**!" He neglected to look into her nose but he did check her ears. So we went to our favorite Dr. O and she saw a starting of an ear infection and a sinus infection. She also had us go to another dentist because she was concerned about G's toothache. So, the next few days, the toothache goes away with the antibiotic but we still go to the dentist. They are able to get x-rays and see bunches of cavitites and soft enamel. The verdict: 10 crowns and 4 baby root canals! Holy cow! So, we'll be seeing a 3rd dentist next Monday. I'm hoping for somewhere in between. <br />
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I'm doing summer school this summer. It's for half days and it makes you appreciate the students you have. I have met some neat kiddos though. I think they like my kookiness. It appeals. So far when I have asked to take out their piercings or cover their tats, they do it, even without rolling their eyes or snorting at me. <br />
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I have been wanting to do small little home projects in the afternoons but I haven't had a chance. I've had doctor appointments for both me and G. G has been having an especially rough patch with meltdowns. It started when her teacher was abruptly let go. We made a card but I don't know if that's going to give her the closure she needs. It only seems to happen with me or with me and my parents. She's at a very independent phase but at the same time she will act or talk like a baby (whining especially). We went to a resource fair this morning for kids with special needs and she melted down in the parking lot on the way home because she asked for something and I told her that we would have to wait on it. Afterwards she said she melted down because she was hungry...that may have been but it was more about being bratty because she didn't get what she wanted. She is used to people wanting to do everything for her. We are working on that. We are visiting with a nice lady who is helping me gather more tools for my tool box in dealing/not triggering meltdowns. So far, everything is okay.<br />
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Gracie is taking swim lessons. We had to miss this week and one next week because of being sick and a doctor appointment. She's enjoying it but I'm hoping it's not causing her to be sick. Thankfully her oxygen sat levels have been low 90s which has been awesome. She has an incredibly amount of energy that I want to bottle.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRMzEUdsPWwAv7Uw9Tpc6dmG5FjmMFbuaFdsY9bi2upMUlqcq7KIJigPKcczySx4czdCGH1EaBNWQ-Lo3qA2b5B3lRjaB5U20v7f2dmBQtL5q3-93JQfr84-MGlvoXfYVWjM0vjg/s1600/IMG_0794.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRMzEUdsPWwAv7Uw9Tpc6dmG5FjmMFbuaFdsY9bi2upMUlqcq7KIJigPKcczySx4czdCGH1EaBNWQ-Lo3qA2b5B3lRjaB5U20v7f2dmBQtL5q3-93JQfr84-MGlvoXfYVWjM0vjg/s320/IMG_0794.JPG" width="320" /></a></div>Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-56933568779089464862012-04-23T14:54:00.001-05:002012-04-23T14:54:14.664-05:00Liver in a quiverDid you know that a person who has a fontan most likely will experience some damage to their liver? Shouldn't that be something that is discussed with the parent beforehand? I honestly didn't realize that the fontan could cause liver issues. I knew we were checking her liver function once a month because of the bosentan she is taking for her pulmonary hypertension. So it seems that there is some sort of mild concern over the way her liver feels...it feels worse than the last visit. I think he was also concerned that Friday morning, before our follow up appointment, Gracie threw up four times, one in the car on the way to the appointment. She's better now and has a lot of energy. She went to dance class and bowled Saturday at a friend's birthday party. She enjoyed the bowling but enjoyed the popcorn even more. She is still pink but I have that kind of waiting for the shoe to drop feeling since Friday when we saw the cardiologist. The whole liver thing has kind of put me into a quiver. If it's not one thing, it's another. But no matter what the hurdle is, we can overcome, as we always do...with patience and prayer. I watch her and think to myself how amazing she is, not because she is my daughter but because she is out there taking risks left and right and not showing all the major stuff she has gone through. My girl has some serious gumption.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-39496532728128160782012-04-16T14:16:00.001-05:002012-04-16T15:03:20.145-05:00Pinkalicious<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCNQFhnFSrRI6RszDgGWidTEt1Yd_IgZ3idZ8ISuw1np6v2TDVu_k4Mh5YjVbbHVcZw1dSv0U0zoHb_C92Iepu42DyyW-wjcBuMgSialULhxjnDAgaKD9rREjx9NHm2BtvB5jJVw/s1600/IMG_20120410_164436.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCNQFhnFSrRI6RszDgGWidTEt1Yd_IgZ3idZ8ISuw1np6v2TDVu_k4Mh5YjVbbHVcZw1dSv0U0zoHb_C92Iepu42DyyW-wjcBuMgSialULhxjnDAgaKD9rREjx9NHm2BtvB5jJVw/s320/IMG_20120410_164436.jpg" width="320" /></a></div>I'm so sorry that it has taken me so long to talk about the heart cath. I feel like when I miss 2 days from work, I come back hitting it hard, running around like a chicken with its head cut off.<br />
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The heart cath was a tough day. It was super long. They didn't get started until 10 a.m. (we had been there since 7a.m.) Gracie was pretty anxious as we all were. Initially we were told it would be like 3 hours. We got one update like 11ish. Then around 12:30, 1ish, the nurse came out and said he was still gathering data. Okay, I knew then and there that something wasn't right. Dr. C is a cautious guy but if he could have closed it after the first try, he would have. We all knew this was pretty much our last effort before something else, which I don't want to talk about for a long, long time (the "t" word). Thankfully, our friend, who is a picu doctor, came by, and found out what was going on and told us. The first effort didn't work. The fontan function dropped drastically and he wouldn't be able to close. Dr. C and another cardiologist put their heads together and brainstormed why and decided it was lack of volume (due to not eating or drinking and being under anesthesia for a significant amount of time)...they added volume with calcium and waited before attempting the mimic closure of the fenestration (pop-off valve) on the fontan. After some time, they tried it again and the function was within normal range. He did it again and the same results. So, Dr. C. closed the fenestration. She pinked up. Her oxygen saturation levels were in the 90s. Because she was under anesthesia for so long (like until 3ish), they had her recover in PICU and we spent the night there. Gracie was like a rock star with all of our favorite nurses coming by and seeing her, especially sweet Katie O'Dear. We got released the next morning from the hospital and Gracie is still doing well. She's pink and has oxygen saturation levels around 90-94! She went from 79 to 94 in one day! Amazing! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJap87mWHupJJFTwKbfu5hGJ0tqJzmLBDgB3f0DjOcRJ4yI2Ghyhs2w84wXpC3RVSaDgDWYpPnXF7guxAp3fmR8o6hJP-kSUkp7qgTen32pvq7VsmtiJyJUXLlnrnRkj5dTCpuNg/s1600/Zi6_0700.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJap87mWHupJJFTwKbfu5hGJ0tqJzmLBDgB3f0DjOcRJ4yI2Ghyhs2w84wXpC3RVSaDgDWYpPnXF7guxAp3fmR8o6hJP-kSUkp7qgTen32pvq7VsmtiJyJUXLlnrnRkj5dTCpuNg/s320/Zi6_0700.JPG" width="320" /></a></div>I asked her if she felt different and she said she didn't. I can see that she's having a little difficulty adjusting to her new body, like she thinks it's so weird to feel good and with more energy. I think, like us, she is pretty cautious. She is trying to see how far she can get with things since she just had another procedure...she is pushing the bratty envelope. But she is pink. PINKALICIOUS! I am thankful and hoping we don't have any negative effects from closing the fenestration (like effusion!)...I have never seen my girl so PINK! Pink fingers, lips, toes, face! Thank you everybody for your prayers! Yeehaw! God is GOOD!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEYnTwND2nWbsX_iLlct0FXilpOEGX9PWJ5XkJC_Ctc1JbfllYr7LRezEImM6nK-PXWsDhdxPsSYn0mXSCmUgclCXjchUZZNkvqMrVthBCigBhj4AWARU4vDfqMtIn0M2N6vUfRw/s1600/Zi6_0712.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEYnTwND2nWbsX_iLlct0FXilpOEGX9PWJ5XkJC_Ctc1JbfllYr7LRezEImM6nK-PXWsDhdxPsSYn0mXSCmUgclCXjchUZZNkvqMrVthBCigBhj4AWARU4vDfqMtIn0M2N6vUfRw/s320/Zi6_0712.JPG" width="320" /></a></div>Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-75101255262954976662012-04-03T11:00:00.000-05:002012-04-03T11:00:56.484-05:0040I turned 40 on Friday. It came and went without a whole lot of hoopla. It was because of me that I didn't want anyone to fuss. I was never afraid of turning 40 because frankly there is no going over the hill...life is always about ups and downs in the hills of life. I actually think as I am getting older, I am getting wiser, despite sleep deprivation. <br />
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The day before I tuarned 40 I got some news that I wasn't ready to hear. Gracie had a blue spell earlier in the week...enough of turning blue and breathing funny that her teacher called, which is VERY rare. I, of course, was out of pocket being part of testing so I missed the calls. She was okay but it was alarming for me. We saw our cardiologist Thursday and we had a long discussion about my girl...she struggles a lot more than before with her stamina...when she gets sick (which she was for most of February and didn't get over it until spring break) it really takes its toll, especially in her oxygen saturation levels...she is overall a lot more bluer than before. The decision was made to do a heart catherization and try to close up the fenestration. The scary part is that if it cannot be closed due to high pulmonary pressures (which is what she had as a result of the fontan), most likely we will be facing heart transplanation. I knew the T word was a possibility in the far off future, not just this close. I am still dealing with that shock. I think I realized how concerned he was when he called the cath cardiologist, discussed my girl right then and there and then called the scheduling nurse to set up the appointment for ASAP...and we weren't able to register for dance class in the summer. I thought to myself, "Holy cow! I can't believe we are back on this roller coaster ride, yet again." I pray that they are able to successfully close the fenestration and that there will be no effusion as a result. I pray that she gets pinker and her o2 sats increase. I have to try to keep a positive mind and be strong for her so that she won't be scared. She is a miracle girl. She continually surprises me. She has a strong spirit and she really is my super girl. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHRjU7NTPa12ziJp5ERtKWi7C4nISHrliay3-58xbW-yODssQNTA7IUKs4MwleJvOnI6viJbsB5rWc2IU6CVVRrk1At-FOaYcrNV5SDFY7-v5MGxB0R7Gt6W0TvFjSyiMiTa01QQ/s1600/DSC00631.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" dea="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHRjU7NTPa12ziJp5ERtKWi7C4nISHrliay3-58xbW-yODssQNTA7IUKs4MwleJvOnI6viJbsB5rWc2IU6CVVRrk1At-FOaYcrNV5SDFY7-v5MGxB0R7Gt6W0TvFjSyiMiTa01QQ/s320/DSC00631.JPG" width="320" /></a></div>So, on April 10th, if you get a chance, say a little prayer for my Gracie that everything goes well and for God's healing on her little heart.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com2tag:blogger.com,1999:blog-35024107.post-85299260463950230412012-02-09T13:06:00.000-06:002012-02-09T13:06:08.163-06:00Good News but bratty girlIt seems like it has been ages since I have blogged. It is good therapy for me. It just seems that when I have a chance to get on my laptop, I'm too stinkin tired. I spend more time on the ipad checking e-mail or just looking at my facebook to see what my friends who I never see are up to. We got a great report that my girl is doing well. The cardiologist for the first time said she looked good! He used the word. That' a great thing. He postponed doing another cath to close the fenestration (the pop off valve) for a few month to let her continue on her upward trend. She's doing so well that she's taking dance classes every Saturday and is having the time of her life. That being said, she has been acting pretty bratty the past 3 days which leads me to believe all is not well. We are going to see the pediatrician this afternoon. She has a cough and she is incredibly clingy but also REALLY mean. She's throwing tantrums over small stuff. She really is pretty laid back but not this week. I know my girl is a drama queen but this is soooo much more. Last night she woke up with her knee hurting. She cried and cried. She wanted purple medicine (motrin) and heating pad. She couldn't go back to sleep and getting ready for school was not a pleasant experience. I had to stop, walk out of the room, take some deep breaths and come back all calm because I know this isn't my daughter. She was fine as soon as we got into the car for the most part (she got pissy again when I started singing along with her on one song of her Beauty & the Beast CD...it's her song!) I don't know if going to the Valentine's day party at the hospital triggered it but I feel she was bratty on Monday too (party on Tuesday night). So, that's what I'm dealing with. My parents are worried that I'm overstressed, which is just part of being a single mom. It's tough. My therapist is totally booked and I haven't seen her since August. I can't miss any more work. I already got docked. Insurance costs and prescriptions costs went up this year so my paycheck is less. I had to start all over on copays (which therapies alone are $60 a week)...so yep, I'm stressed. Yep, I've sometimes overwhelmed and stressed. But it's kind of a way of life. It will get better. Right now it's about keeping my head above water and one foot in front of the other. Honestly, life is good and it will get better.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com1tag:blogger.com,1999:blog-35024107.post-58411255908342908532011-12-31T22:52:00.000-06:002011-12-31T22:52:31.092-06:00Happy New YearI can't believe 2011 is already over. This has been a very tough year but also a year of miracles. My Gracie has turned 4 years old. She's smart and incredibly sassy. She's changed the words to LMFAOs "I'm sexy and I know it to, "I'm sassy and I know it!" We are working on patience on my part and cooling down the temper on Gracie's part. We both want to be control and it's almost a battle royale some days when neither one of us will back down. I just can't wait until she's a tween or teen. I'm going to need to go to Mass every day so I can survive.<br />
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As I think about my girl this year, I have learned so many new things about her...<br />
1. I knew she was brave and tenacious but I didn't know how incredibly strong and brave she is until this summer. She is way stronger than any super hero...Seriously.<br />
2. She is a scaredy cat...she gets scared of things really easily, even when she likes them...She loves the music and Belle from Beauty and the Beast but the movie makes her very nervous. When bad things happen on tv, she panics...she gets scared very easily<br />
3. She doesn't like Disney World<br />
4. She says sorry for everything, for example, "I don't like Disney World, sorry!" Poor baby...I think that is my fault because I am a big believer in apologizing for poor behavior. <br />
5. She has a 10 minute attention span on most things...toys, playing, etc. <br />
6. Gracie likes to pretend to take orders...she has a notepad and everything...she pretend to answer the phone and we have to "drive" to pick up the phone...maybe that's my clue to cook more at home?<br />
7. Gracie loves the beach...LOVES!<br />
8. Gracie slept in her own bed in her own room for a while but now is back in my bed...she says she's not ready<br />
9. Gracie loves stickers, paper and big pencils to write with and also likes to stuff envelopes<br />
10. Gracie's favorite foods are waffles, enchiladas, and cheese<br />
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It's so weird that here I am, sitting in bed and will probably fall asleep before the NY rings in. I remember the days when I was younger and childless...my night was only beginning and I would be out until who knows when. It was fun but now I feel so much more happier and I look at my daughter who is sprawled out hogging my bed next to me. I know that 2012 is going to be a great year full of blessings. I pray that everybody has a wonderful and blessed 2012.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-23272856218965692292011-12-25T21:40:00.000-06:002011-12-25T21:40:58.336-06:00Merry Christmas & Gracie is Now 4!Christmas Eve (Gracie's birthday) and Christmas were even more special this year. I am so thankful that we have her this year after this past summer. We came so close to losing her twice. Right now, I'm honestly a little on the edge because something isn't right. Thursday night sweet girl was mean girl (which means she is tired or not feeling well or out of control). We went to Costco with my sister and her kiddos and my girl turned blue...lips and hands. We went home and I took her oxygen sat levels which were good for her, 84. But she started complaining of a headache and then she got her low grade fever. She's had the fever and headache for the past 4 days. It goes away after tylenol. She is also on oxygen at night (cardiologist wants her to charge her batteries...he wants it to be in the mid to upper 80s). I have her on 2 1/2 L right now and her sats are 77...can you imagine what they are without oxygen? She also has a runny nose. So, I am watching her closely and calling the cardiologist on call in the morning. Our doctor is in Hong Kong for Christmas. I am just a bit on the edge. I really hope that everything is okay and I'm just worried for nothing.<br />
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Our Christmas was very nice. My sister had to work until 1:30 p.m. so we did Christmas later. I grilled burgers, hot dogs and sausage because I was tired out from the turkey and ham (crazy I know...I love turkey but I wanted to give myself a mini break from the heavy cooking). I also made my Popo's pinto beans and mashed potatoes. Everything turned out yummy. I enjoyed spending time with my family. I am very blessed they live within a mile of me. <br />
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Gracie had a nice birthday breakfast yesterday. She didn't realize she was now 4 years old until my mom said she could now say she was 4. She loved that. She had a great birthday party the week before at an art place. She had so much fun. I didn't realize how stressful it is to plan a birthday party even when it is at another place. <br />
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Gracie was obviously on Santa's nice list. She got the roller skates and elbow and knee pads she asked for. As for me, I got some pretty nice things too...super excited about my Mr. Coffee Keurig machine and I don't even drink coffee but I do love me some tea and hot chocolate. I guess I was on the nice list too.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQ2BhzTBV0XOnhT9FuFw5pO7eTcFehbLLUKdvOakcX2rY1P2rNJeSNWEQmk3Vm_XL4kISlMQCC6Kl1gTjcuUlGN3BP7hCG_u7oO6d02RgJJKa8xL696Z5W3z1oMTbXX8EtBjG7Q/s1600/DSC00582.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcQ2BhzTBV0XOnhT9FuFw5pO7eTcFehbLLUKdvOakcX2rY1P2rNJeSNWEQmk3Vm_XL4kISlMQCC6Kl1gTjcuUlGN3BP7hCG_u7oO6d02RgJJKa8xL696Z5W3z1oMTbXX8EtBjG7Q/s320/DSC00582.JPG" width="240" /></a></div>I hope everybody had a blessed and wonderful Christmas. I wish you all a New Year full of great blessings. Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-55656384371390176762011-12-08T13:33:00.000-06:002011-12-08T13:33:08.166-06:00Catching UpWe survived our first Gracie & Mama trip. Right before Thanksgiving, we went to Disneyworld. We had a great time but I discovered that Gracie wasn't quite ready for the experience...she loved the characters but the rides left a little to be desired. She did love the two Toy Story based rides because they were interactive. She HATED "It's a Small World"...the dolls freaked her out a bit. She got sick...like she was blue on Thanksgiving. Her oxygen sat levels were okay...not the best but okay. I took her to visit our friend who is a PICU doctor the next day and they thought she looked okay. But we are now doing oxygen at night every other night. We had a nice holiday but I noticed that schedules really help her behavior (either that or the idea of being on Santa's naughty list is motivating her)...she was really mean during the rest of the week we were home together during Thanksgiving break.<br />
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She has discovered roller skating (via physical therapy)...she LOVES it. She can skate better than I can. She's asked Santa for skates and elbow and knee pads for Christmas. We also got an Elf (Elf on a shelf) which Gracie named Cookie. He seems to be a good bad behavior deterrant.<br />
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We are getting ready for her birthday party on the 17th of December. It's our first big party with friends. It should be an interesting experience. I think I have the goody bags together. I need to get the snacks, cupcakes, and ice cream cups and drinks. Then I'll be ready to go.<br />
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We have a mended little hearts Christmas party tonight. She'll be styling and profiling. I had to get new black mary janes which led me to discover that all of her shoes were too small and her toes were curling up. It would have been nice if she had told me. I didn't know because she dresses herself and puts on her own shoes. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMaF9flrKU2sTAW8lhJpilHKAIFVs93Cq_nJcLnz0NCr73Z_93SzTeFMTxQ2U-ixl1f7IKmgiS19a27qKfUtwWUAs7W5QVWqHApAp7YTxUmzbKAFD0w9kLY7okJEtlbjsdUtW-3w/s1600/DSC00379.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMaF9flrKU2sTAW8lhJpilHKAIFVs93Cq_nJcLnz0NCr73Z_93SzTeFMTxQ2U-ixl1f7IKmgiS19a27qKfUtwWUAs7W5QVWqHApAp7YTxUmzbKAFD0w9kLY7okJEtlbjsdUtW-3w/s320/DSC00379.JPG" width="320" /></a></div>Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-15473892436514229432011-10-30T22:35:00.000-05:002011-10-30T22:35:25.870-05:00I keep getting sick!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYOdK2HHHtAiTE7paBE42feiEiyu2DRSBdy0z7eT79n4GsWyFfVd50Ey4uQP9DBSBZ4vZncudXn1X8-K3WLLBpOd3miIM-0HULkZEZTAliM3JXODYxj6z0vs24q0WJx8ZCnlY9rw/s1600/DSC00270.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYOdK2HHHtAiTE7paBE42feiEiyu2DRSBdy0z7eT79n4GsWyFfVd50Ey4uQP9DBSBZ4vZncudXn1X8-K3WLLBpOd3miIM-0HULkZEZTAliM3JXODYxj6z0vs24q0WJx8ZCnlY9rw/s320/DSC00270.JPG" width="320" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR2v9NQNxvXZMKKFd-OTgLhdNGtNOZof-pS7bqeV3A-F7gMqs4cZpAXmZDZ0yuWKIAdM1Xq9ZMbxI10t1FOFzzkXg8l1Y6k59m9YECL80SoiULQtycW9V2-hLdd9yhJu5AG6rMmg/s1600/DSC00287.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR2v9NQNxvXZMKKFd-OTgLhdNGtNOZof-pS7bqeV3A-F7gMqs4cZpAXmZDZ0yuWKIAdM1Xq9ZMbxI10t1FOFzzkXg8l1Y6k59m9YECL80SoiULQtycW9V2-hLdd9yhJu5AG6rMmg/s320/DSC00287.JPG" width="320" /></a></div>My 3 almost 4 year old took care of me and her Thursday night. I was exhausted and sick as a dog with a raging sinus infection that was rocking my whole body...mostly my head. She had a tough day herself. She got blood drawn for a CBC & INR test by Junebug our awesome home healthcare nurse and she found out we will have to repeat the INR this week because her number was lower than her doctor would like. She really hates pokes and frankly, I can't blame her. Anyways, I really felt like I had been run over by an 18 wheeler. I was laying on the couch with a heating pad on my face while my daughter ate her dinner (which I had made/heated...beef ravioli with parm. cheese (her fave cheese) and watched Nick Jr. When she has an especially tough day, that's how she unwinds. I was falling asleep during the shows and she would announce one show was over and another was beginning. She would periodically ask me how I was or tell me I was snoring (because my nose was stuffed up). I heard Go Diego Go and decided that would probably be a good time to go upstairs and lay down in my bed. I told my girl that she could watch TV in my room or the upstairs TV room. She opted for my room in bed next to me. I, of course, fell fast asleep (it was only like 7:30 p.m.). I made sure I had given her all of her meds and I had her juice. I even turned on her Ikea flower & bug lights in her room when we got upstairs, just in case I fell asleep (I know myself). I vaguely remember her saying that Team Umizoomi was over and to move over please. Which I guess I did. I woke up at midnight...the TV was turned off. No Gracie in my bed. I panicked briefly, walked quickly to her room to see that she had tucked herself into bed. She even had her Abby Cadabby potty book that she likes to read, right next to her. I felt so bad but at the same time I was proud of her for taking care of me and her. I felt better the next morning. Unfortunately it was one of those up and down things. I knew it was getting worse slowly. Mornings are always good for the most part. I was able to feel good for the Duck Race Saturday morning in which my sweet girl dressed as Snow White (she should have won the costume contest but whatever! we still got a great raffle prize) and this morning at the park. I decided to go a 7 day a week clinic because it is hard to get into my doctor outside of the work day. It was as I suspected...a sinus infection. I got a shot and an antibiotic. I should be good to go for Halloween tomorrow. Gracie is ditching Snow White to be a giraffe...her cousin is going to be a pig...wants to be in the animal category. Glad we had those old Halloween costumes from my niece and nephew. Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com2tag:blogger.com,1999:blog-35024107.post-66873233678388219962011-10-16T18:42:00.000-05:002011-10-16T18:42:30.402-05:00Trying to keep our heads above waterMy beautiful girl started getting grumpy and mean...that can only mean one thing...yep she's sick...strep and an ear infection. She's been on antibiotics now for several days and is doing much better. In fact, she is now on her scooter wearing nothing but a pair of boots, a helmet & inside out panties...she had been wearing her Snow White costume but one of the ribbons ripped off and we have fabric glued it back (it is now setting).<br />
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We went to the pumpkin patch yesterday. She had a nice time. It wasn't too far from our house and not too hot outside. We're finally getting out of the 90s. I'm waiting for the fall weather to finally begin.<br />
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Work is okay. It's so hard doing everything without an assistant. I'm incredibly busy despite the fact that I don't have an assistant and my circ numbers are higher than they were last year. Not sure why but they are. I'm still have problems trying to convince the powers that be that circulation numbers truly aren't a reflection of my program. In fact, I've been doing more teaching this year. I've been frustrated to the point where I honestly think a change will be good for me...not immediately. I love my faculty so much. I am looking at maybe the new middle school if the bond passes. I think a new school would be a great challenge. I have been at my current school for 10 years now...the longest I have been in my education career. I think change will be good for me. Right now though I am trying to keep my head above water in my professional and personal life.<br />
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We go back to the cardiologist on Thursday. I hope we get good news again. I still keep waiting for the other shoe to fall. I hate that I don't feel like it's over yet. She is now sleeping in her own bed. She's had some night terrors and one accident but she's been there now for one week. I am super proud of her. She tells me she doesn't want to sleep with me because I have stinky feet (one day my shoes got wet and gave me stinky feet...one day!) but I'm glad she's in her own bed. I think it is good for both of us. I am sleeping better. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZEWLFNJWyo-jOEhvt-3NYqohUQ7eMUhrliDUHctCBhMJmEkuo0i_ZE8oYGRLMn1ynGNQL7Vf8nwVkIPfGy6EhxnGVsdNH2tRNEPelYbIOWdIcyyFe5F2_LTZyDly9jY0UxqvRQg/s1600/DSC00200.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZEWLFNJWyo-jOEhvt-3NYqohUQ7eMUhrliDUHctCBhMJmEkuo0i_ZE8oYGRLMn1ynGNQL7Vf8nwVkIPfGy6EhxnGVsdNH2tRNEPelYbIOWdIcyyFe5F2_LTZyDly9jY0UxqvRQg/s320/DSC00200.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4HkYBh8CPbfbMsH05b_YIuMecuVLlz40rwc6VETGaQNIp-FIGZoQ_FaZyssljGDbVF1-8nfWbjCd-n-N5v4YH1vArWYi64b_0HySSWRl7ZDpfLcx2PYYD0qHPzb8gxHBXqL9jg/s1600/DSC00165.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4HkYBh8CPbfbMsH05b_YIuMecuVLlz40rwc6VETGaQNIp-FIGZoQ_FaZyssljGDbVF1-8nfWbjCd-n-N5v4YH1vArWYi64b_0HySSWRl7ZDpfLcx2PYYD0qHPzb8gxHBXqL9jg/s320/DSC00165.JPG" width="320" /></a></div>We are still taking our days one day at a time. We are still on some heavy meds but the thing is we still are. And our lives are almost normal!Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-41988853157252059122011-09-10T21:42:00.001-05:002011-09-10T21:44:27.057-05:00Life in the Fast Lane<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnxMt3dRnteonwAN9ERRxsjIue04rE6xBzfC7LOLrWb24RK6gQKY28fTLY_uCBaLJPuKLhVDf_DFO4lUsInt0dAlxz8tjBogtMOw4PDqmYGocJqPmdAbRek4Gp54IvGlj_xRQbxw/s1600/IMG_20110909_165706.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" nba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnxMt3dRnteonwAN9ERRxsjIue04rE6xBzfC7LOLrWb24RK6gQKY28fTLY_uCBaLJPuKLhVDf_DFO4lUsInt0dAlxz8tjBogtMOw4PDqmYGocJqPmdAbRek4Gp54IvGlj_xRQbxw/s320/IMG_20110909_165706.jpg" width="240px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0dUAV1o0U_3B7MPj9t2OK1EdxGa1oF45YqJqRGewoEajCT5_WaqD-ghnpme8tpQjEJwRI5520CcO4HS0rKktYBlDNem1dJ3FTf5mFdwUhEdOJUmm4rAk9-zi0h7GE1OeFAExQyw/s1600/IMG_20110906_065622.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" nba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0dUAV1o0U_3B7MPj9t2OK1EdxGa1oF45YqJqRGewoEajCT5_WaqD-ghnpme8tpQjEJwRI5520CcO4HS0rKktYBlDNem1dJ3FTf5mFdwUhEdOJUmm4rAk9-zi0h7GE1OeFAExQyw/s320/IMG_20110906_065622.jpg" width="240px" /></a></div>We've been out of the hospital almost 3 weeks and it seems that life is suddenly on fast forward. I always feel like I'm trying to catch up. I came to the conclusion yesterday afternoon at work that it was never going to happen. I just had to give up the fight and get done what needs to be done...forget about the stuff that I would have like to have done but it'll be okay if it never gets done, and just keep up with the present..I call it real life treading water. I am keeping my head above water. It's not just work (which I do love but it sucks this year that I have lost having an assistant so that makes it a lot more difficult) but just keeping up with the medical side of my sweet and sassy girl...every week week there are 2 days of PT/OT & Speech, one afternoon visit by JuneBug the best homehealth care nurse to do INR (finger poke tests for coumadin), and I've added Play therapy to the mix. 3 afternoons a week we have something and my parents take her for speech and OT on Monday mornings. I'm getting up at 5 a.m. to give her round 1 of her meds and then as we are walking out the door around 7:15ish, round 2 of meds (that I have to compound) and in between that time her asthma puffs. When we get home in the afternoon repeat the morning routine but throw in some coumadin (that also has to be compounded). Someone told me today that they didn't know how I did it but you have to...there isn't another choice. I have to remind myself that I would rather have my Gracie than not have to have all this "insanity" of medical mania. And you know, if you really think about it, there are parents out there that have to deal with a lot more than what I deal with. I don't have feeding tubes or catheters or wheel chairs. Those parents truly are amazing. Whenever we go to a Starlight Foundation event, I am reminded of that. I have a very smart, amazing, funny, beautiful, sassy miracle child. I'm blessed. She reminds me of the beauty, love and power of God. And she's doing great! She's back at school helping her "boyfriend" Danny out by reminding him to put on his glasses or put his blankie in the cubby. She's crossing her arms when she thinks she was wronged and is not afraid to say something about it. She's got an opinion about everything under the sun and is always asking why. I think I'm going to try to follow my daughter's advice of slowing down.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-48187465171156270942011-08-30T21:18:00.000-05:002011-08-30T21:18:51.737-05:00We're Home and I'm back at workWe came home Friday afternoon. Gracie was antsy to get back home. She's done incredibly well with spending most of her summer in the hospital. I don't know if she's quite processed everything. I know I'm still processing things. I know that my daughter is a miracle child. I know that there were a couple of times I almost didn't have my daughter. I know that I still get a little emotional when I talk about some of those times. I feel guilty sometimes because my parents have been watching Gracie while I have been at work this week. I don't ever want to feel like I'm taking advantage of them. They have pretty much been my main support system as far as the actual physical care of Gracie. Everybody else I know has to work like me. I worry about my job, falling behind, and getting my pay docked. I also worry about another trip to the hospital. I keep telling myself that I have to do what I have to do and God will provide. He always does. I also have to keep telling myself that Gracie is going to be okay. She knows herself. She used to want to wear her canulas for oxygen the second time we came home. This time she says she doesn't need it. I think she does though, at least some of the time.<br />
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Gracie is doing okay. Her sats were a bit better in the hospital but she's also been more active. She's been playing like mad, singing along to the Fresh Beats,watching Hello Kitty and Ni Hao Kai Lan. She has also been acting out more, especially in the evenings when she's tired. It got to the point one night that she ended up sleeping in her own bed in her own room. She stayed there until 4 a.m. when she appeared on the side of the bed, sweet as pie, wanting to sleep with me. Of course I let her. We go to the cardiologist tomorrow and to play therapy to help her deal with her anxiety issues and the big changes in her life. I am praying for good news and I think the therapy will be good for all of us.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-58568778399536583782011-08-21T08:38:00.000-05:002011-08-21T08:38:34.146-05:00She wants what?After all that has been said and done to my sweet miracle, I am finding it hard not giving her most of what she wants...I don't want to create a bratty monster. In fact, she really doesn't ask for or demand anything. But she blew me away Friday evening when she asked me for a sister. So, after my best friend, who is pregnant and due tomorrow, leaves Gracie says, "I want a sister." "A what?" I ask her because I couldn't really understand what she was saying. I start naming things around the room and she shakes her head no, that wasn't what she wanted. Finally she said it slowly, "I want a sisss-taaaahhh, please, please, please." "A sister?" She nods her head yes very vigorously and continues with her sweet please, please, please plea. I said to her, we can talk about it when you get healthy. She grins and nods like she has won the lottery. I think she thinks she is going to get a sister and it'll be fun. I volunteered my best friend's new baby to be a trial sister for her but she said that she wanted her own. She didn't want a baby sister though. She wants a younger sister who she can play with. I honestly have always imagined having a second child, a sibling for my sweet girl. However, in light of her serious health issues, I took it off the table so the focus would always be Gracie and I never wanted a sibling to ever feel slighted because of the attention to Gracie's health. We talked about how a sister would affect our life, not being able to travel as much, etc. She briefly changed her mind but went back to wanting a little sister. She totally threw me a curve ball...she had totally been okay with being an only child and now she wants a sister. Something to think about. Not immediately. Maybe in the future.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com1tag:blogger.com,1999:blog-35024107.post-34011268107230556552011-08-20T08:24:00.000-05:002011-08-20T08:24:49.289-05:00I believe in miracles!I always knew my girl was a miracle girl...first even making it 18 months in China without surgical intervention. Then on July 14, 2011, when she suffered heart failure, we almost lost her, but the awesome medical team at Santa Rosa gave her the medical intervention she needed so she could survive. But yesterday was probably, in my opinion, the one that just blows my mind. Yesterday, we were holding our breaths because the doctor was going to do a risky procedure in the cath lab to save her life by busting and sucking up the large blood clots around her Fontan and her pulmonary artery. When he went to do pictures before he actually began the procedure he found nothing...NO CLOTS! He double checked, triple checked...no clots! It could be argued that the CT scan that showed this clot was seriously wrong but I like to think it was a miracle...the power of God and the many prayers...I am so awed by my God and so thankful to him and all her prayed for us. I am eternally grateful. The other great thing is that they think they know why Gracie's sats were off...high pulmonary pressure in lungs...found that nitrous works and they think they have found a medicine that will work like the nitrous...which means maybe no o2 for her when we go home. We probably have about a week here. My students come back next week but my supportive and fantastic principal is closing the library next week so I can be here with my sweet girl. We are still in PICU but we hope to transition to IMC (intermediate care) unit later in the week. Thank you all for your thoughts and prayers. Keep them coming as she recovers and starts this new medicine. I hope that it does what she needs it to and gives her the extra boost to recover from the heart failure and allow her to be a 3 1/2 year old little girl.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com3tag:blogger.com,1999:blog-35024107.post-68615199190491936352011-08-19T03:26:00.000-05:002011-08-19T03:26:10.527-05:00Back Yet Again...Critical Yet AgainI should be sleeping. I just can't though. I feel like I'm living in a neverending nightmare. We are back at Santa Rosa in the PICU...her blood clot around her fontan has decided to rear its ugly head with vengeance. If you were looking at my girl, you wouldn't know how critical she is...she doesn't even think she's sick. Her sats were significantly lower, we had to bump up the oxygen at home, she was bluer, less active, and heart rate erractic. We took her back to the cardiologist Wed. morning and we were admitted to IMC that afternoon. We couldn't get her sats above 80...We had been home 3 weeks. We were doing okay...she was on oxygen and we were weaning but she was feeling good, eating but it seemed that we were building more clot (even though we were on coumadin). So, you might wonder why she's so critical...the huge clot around the fontan, can't remember what they are calling it right now...it could easily break off and going into places that can cause serious damage, heart failure/stroke...she wouldn't survive...so on agatraban a clot buster...but then you have to do something more...so a heart cath is scheduled. It is supposed to bust and suck up a lot of it...however it is incredibly risky...but it we do nothing, she'll die...the medicine approach has its own drawbacks and it may not be effective either...it's hard to make that sort of decision. I pray I made the right one. I watch her sleep and think to myself, please help her be strong....help me to be strong...the doctor said that she'll need lots of blood and that she's going to be sick afterward...who knows how the other little pieces that break off that aren't filtered as well will affect my poor sweet girl...I'm praying for a miracle that somehow preserves her life without much damage to her precious and fragile body and mind...I just am trying to keep my mind positive but at the same time you can't help but be incredibly terrified of the unknown and the unwanted what if...I have incredible faith in God but I also know that God's plans are sometimes not the same as mine. That scares the heck out of me...Then in the back of my mind, I keep thinking of my job...school starts with kiddos next week...just found out they are counting my 2 1/2 absences...going to end up being docked my pay because I will have to use more than the 10 days I had..probably going to do FMLA but I feel guilty for my Wood family (staff and students) because there is no library assistant and seriously unless you bring in an actual former librarian, how will they be able to run the library and all that comes with it? And the battle in my control freak brain hates the idea of someone who doesn't know jack about it messing everything up that I have worked hard to establish and I already feel like I am trying to catch up with everything at work from round #2 in the hospital. Honestly, I am super overwhelmed. I want to get off of this roller coaster (which I ususally love roller coaster rides at theme parks). Please pray for my girl...pray for me and my family for strength to get through this difficult and trying time.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com2tag:blogger.com,1999:blog-35024107.post-63684133573979886202011-07-28T22:16:00.002-05:002011-07-28T22:16:58.763-05:00My life in the hospitalIt has been three weeks today since we have taken up residence in the Santa Rosa PICU. We got readmitted to the hospital that Thursday during our follow up appointment because the left side of Gracie’s chest had fluid. We thought it would be as simple as pop in a chest tube for a few days and then back home. Yeah, not so much…she was up and down. Tuesday morning, she was okay, not great but okay. By Tuesday evening, she had really declined. She was in heart failure. They were finally able to get her stable by putting a central line and arterial line in…this was about midnight. By 6 a.m., she started declining again. She was breathing like a fish out of water, barely keeping her eyes open. She had that gray, pale deathly hue. She kept asking me to tell her The 3 Little Pigs over and over again. I knew we were at that point…the heart team wasn’t supposed to do rounds until after 9 when the whole team busted through the room…I knew from their faces it wasn’t good. They decided to put her on the ventilator to help lighten the heart’s load. It is a risky thing to do with a recovering heart kiddo but it had to be done to save her life. That was the worse day I have ever had in my life. As I write this account, I feel the tears forming in my eyes. Even though you have a heart kiddo and they are at a higher risk of dying, you just don’t go there. I never lost faith in God. I knew I had a great team of doctors. They were able to stabilize her by noon. They found more fluid on the other side and put in another chest tube and they also found that she had a blood clot in the fontan as well as in her right leg. They made me go home and rest. That was the second hardest thing I have ever had to do in my life. But I realized that I couldn’t do anything for her. I wasn’t going to be able to save her. I needed to let her rest and heal. I needed to rest and heal. <br />
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So, fast forward to 2 weeks later…she is off the vent (got off of it 4 days later)…she went through terrible withdrawals and is now being weaned off methadone. She had a PICC line for 10 day and it got removed yesterday. They have her on Coumadin but are trying to find the right dosage. She isn’t eating as well or not at all really so they put a tube that goes into her tummy and are now doing night feeds. We might be switching to another anti-coagulant medicine that has to be injected twice a day if we can’t get the Coumadin working right. She’s still on oxygen and she might be going home with it. She’s angry and frustrated about being stuck here. She is limited in going to the playroom because she has to be monitored (heart) and has oxygen. She is still sweet, charming and funny but you can see the weariness and wariness in my sweet girl’s eye. I’m trying to arrange play therapy for her to help her work through the major trauma she has gone through. I’m going to therapy to work through the trauma. I had been doing pretty well, feeling pretty okay when the rug was pulled out from underneath me. I stress over going back to work August 8th…will we be out in time? I only have 10 days to take and then I get docked. What happens if I get sick or she gets sick later on? Who will take care of her if we get out in time, she can’t go back to school just yet. The unknown is darn scary. I know we will survive but it would be nice to have some answers.<br />
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I am so ready to go home. I hate having to wear my clothes to sleep in. I hate having no potty in our room so I have to walk all the way to the waiting room to go. I hate the walk of shame, it really isn’t but it feels like that when you have to go potty like at 3 am with your hair messed up in the clothes from the day before. I hate not sleeping in the same bed as my girl and holding her all of the time. I hate that both of us have been changed and are wounded creatures. I hate that my baby is scared and has been traumatized. I hate the fact that there isn’t anything I can do to make it better. I hate that she didn’t get a summer vacation or get to recover with me. I hate that it’s going to be hard to transition back to home life if we have accessories like an ng tube and/or oxygen. I just hate feeling like our lives have been put on pause. I hate feeling like the world is passing us by.<br />
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On the plus side, I have met some wonderful people and have become friends with many of the doctors and nurses. I have seen them fall in love with my girl. They are her greatest cheerleaders and they adore her and lavish a lot of love and attention on her. I pray that in less than 2 weeks, we will be sleeping in our own bed and staying strong and healthy. My Gracie is my everything. I am thankful that God has blessed me with her. I know that He gives me only what I can handle and I know it’s for some purpose. I am stronger. It’s just how scary your life can change in a blink of an eye.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com3tag:blogger.com,1999:blog-35024107.post-35858811711446192902011-07-06T19:38:00.000-05:002011-07-06T19:38:52.444-05:00Ups and DownsRecovery from the fontan has been a lot harder than the Glenn. I had heard this was a tougher procedure but I didn't realize that also the recovery would be harder and slower. We are sort of managing the pain with motrin and tylenol but when they start wearing off, you can tell. She has not a lot of stamina and really isn't eating a whole lot. She is eating pretty much rice and some eggs. I've tried to get her to drink a pediasure a day but we aren't really successful. She is incredibly stubborn...but that makes her the survivor that she is. We're still working on the antibiotics. I have to threaten with the hospital but then I also have to give the dose in halves because she'll throw it up. She gets that anxious. <br />
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I have been feeling a little house stir crazy. It's hard because all she wants is me and is very high maintanance. I get it but I finally got a break thanks to my parents. I got a pedicure and the hour away made me feel like 20 times better...almost human again. I think that is something you need when you have a big emotional thing like surgery and an extended hospital stay. I think it is easier for two parent families to stay in the game emotionally and mentally because they can be spelled by each other. Single parents have to rely on others but the problem is when your kiddo will not give you up. It's tough but I'm thankful my parents gave the break at home and my bestie at the hospital.<br />
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We go to the doctor tomorrow. Crossing my fingers that everything is good. I think I'm going to address the pain issue with him. We'll see what happens.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLD9F335iETpxkagHPwjhcXNmHFB7PltbqkP4XulhO0SUtwo8SfQIoiDwEFy2_j77_ORTUFaDa0-oVZ_6VAuU7bPCd8T8fFdHMvZ9-To2Xgs_RkXlq-DzwAXw6DswRkoRTMZQH8g/s1600/makeawishtrip2011+237.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLD9F335iETpxkagHPwjhcXNmHFB7PltbqkP4XulhO0SUtwo8SfQIoiDwEFy2_j77_ORTUFaDa0-oVZ_6VAuU7bPCd8T8fFdHMvZ9-To2Xgs_RkXlq-DzwAXw6DswRkoRTMZQH8g/s320/makeawishtrip2011+237.jpg" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMrQ1NVzmyLJkjYICX7vrJK1ixS4kE8bsjWQKmIyzdndguq9DaRzXLwrzO53a5Jiwn-IWIIOD40cUygrayBQSUWf1gkOCjeW-dFIa2URRAXqt342OPR9DMMPcUK9T9hs0uMo7fkg/s1600/makeawishtrip2011+030.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMrQ1NVzmyLJkjYICX7vrJK1ixS4kE8bsjWQKmIyzdndguq9DaRzXLwrzO53a5Jiwn-IWIIOD40cUygrayBQSUWf1gkOCjeW-dFIa2URRAXqt342OPR9DMMPcUK9T9hs0uMo7fkg/s320/makeawishtrip2011+030.jpg" width="320px" /></a></div>In the meantime, I'm going to post some of the pics from our Make a Wish trip.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-1053173974109534152011-07-03T18:03:00.000-05:002011-07-03T18:03:05.559-05:00Sesame Place & SurgeryGracie, my mom and I went to Sesame Place near Philadelphia courtesy of Make a Wish. We went right before Gracie had her surgery. It was a blessing because during our tougher days after the surgery, we would try to talk about the trip. I have pictures which I will post later I have just been soo exhausted because of the surgery.<br />
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The Fontan was rough. I don't know if it was harder this time because she was older or because I really knew her and knew how much pain and how scared she was. It was an emotional roller coaster. No big, scary moments like the first surgery where they had to bag her. She got a feeding tube this time because she couldn't keep anything down. We were also in the hospital longer because of the fluid coming from the chest drains was more than they wanted. We had a scare yesterday when her fever kept spiking when the motrin was wearing off. She had a rough night and we took her back this morning. I really thought the doctor would keep us but he trusts me and so he took off one stitch in an incision that was bothering her and put her on an antibiotic. She is doing better watching her new favorite, Snow White. She discovered that in our 14 day hospital stay. Ask me how many times I've seen it? Like a zillion. But, it makes my girl happy when she's uncomfortable and that is my priority for her as she heals. I'm hoping we'll continue with this positive progress but we are not out of the woods yet. Keep those prayers coming. We appreciate it and thank you. Prayer is incredibly powerful and it has helped us through these rough couple of weeks.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-61169997601069693522011-05-08T21:31:00.000-05:002011-05-08T21:31:07.265-05:00Happy Mother's Day to All MothersHappy Mother's Day to all mother's out there! It's a tough job but only the toughest can take it. I mostly enjoyed my day with my family except when Miss thang decided to become Miss Bratasaurus towards the end of the evening. But she did pretty good and even sang her "I love Mama" song to me which my nephew put on Youtube. I think both of us are gearing up for the cath on Tuesday. I think it puts both of us on the edge and so we kinda get grumpy easily. I'm not looking forward to the cath and most likely we'll be spending the night in the IMC for observation. YUCK! But, it's better to be safe than sorry. After the cath they will be scheduling her fontan for this summer. I should have a better idea of when the surgery will be by the end of the following week. <br />
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In one month, we will be going to Sesame Place for our Make a Wish trip. We are so super excited. PA here we come!Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-27021458190813803702011-05-02T10:12:00.000-05:002011-05-02T10:12:44.890-05:00Morgan's Wonderland, Princess Tea & OsamaWow! What a weekend! It was jam-packed with excitement. When I got up Friday morning, I flipped on the TV to watch Princess Catherine & Prince William walk down the aisle as husband and wife. Gracie could have cared less. She wanted to watch Max & Ruby. We spent the afternoon and part of the evening at the World Wish Day celebration at Morgan's Wonderland. My daughter made friends with the UTSA roadrunner mascot on the carousel. I think he was enamored of her too. She wanted to go where he went but I told her he wasn't just hers. She said, "I have to share?" Yep Gracie, I'm afraid so. She made me sit in the backseat of the car that they have...I think that is a good glimpse of what is to come in her teen years...mom gets to sit in the back. Of course, I can be a good backseat driver! She had a blast and I'm again so thankful for Make a Wish. They have done so much for my little family. A friend of mine said, "For having such a sick child, ya'll get to have cool experiences" I know. I know.<br />
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Speaking of cool experiences, we went to a Mommy & Me Princess Tea put together by another fabulous organization, Starlight Foundation. We had so much fun (even though on the way, I bit it in the crosswalk (my heel got caught and I was hurrying because the guy at the stop light was revvving his engine) and took the skin off my knee. It was bloody and gross. Thank God Gracie was okay and I was thankful I kept her band-aides and doctor grade neosporin in the car. I cleaned it up with wipies, put on the medicine and a lot of band aides and hobbled back. Poor Gracie didn't want to cross the street again. I assured her I would be careful and she cheered for me when I crossed. She said, "Yea! Mommy didn't fall this time!" We had a wonderful time and the St. Anthony was gorgeous! The food YUMMY! Gracie at first was nervous about the princesses and then fell in love. She couldn't get enough of Snow White. Again, the whole, my princesses came up and I had to explain we share. When they would get out of her sight, she thought they had gone home to their mommys and daddys house. It was nice to talk to another mom about how great this organization is because we don't have to worry about people staring or asking questions. We just get it because we've been there. I also have so much admiration for these moms because their kiddos are even more fragile than my child. It makes me so much more thankful for my situation. I am truly blessed by my child, family and all of the special blessings like Make a Wish, Starlight Foundation & Mended Little Hearts. It's like being surrounded by soft fluffy pillows (or blankies in Gracie's case) that make everything so much easier and tolerable. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0bHIa-P8nQOBJ3alGm2cO2QdvHU3SQ-lb3VidlbrEzLhQb6kr88VnWHFNuxfT7MKrSmWR1VnWcmjn7mhP1RYiv57UV_SN5n3mZP7xN05abWXK2iGF3ovJZF6E6Ky5qnMKAXRCLA/s1600/aprilmay2011+037.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0bHIa-P8nQOBJ3alGm2cO2QdvHU3SQ-lb3VidlbrEzLhQb6kr88VnWHFNuxfT7MKrSmWR1VnWcmjn7mhP1RYiv57UV_SN5n3mZP7xN05abWXK2iGF3ovJZF6E6Ky5qnMKAXRCLA/s320/aprilmay2011+037.jpg" width="320" /></a></div>So that brings us to Sunday night...I finished watching the Lifetime movie about Prince William and Kate and I turn it to watch the weather and I see that Osama's dead. Wow! I'm still chewing on that because I hope it can bring closure to those who lost friends and families in terroristic attacks but at the same time I'm scared of the ramifications it will bring. I will just say a prayer for peace.Jamiehttp://www.blogger.com/profile/03264855361178011930noreply@blogger.com0tag:blogger.com,1999:blog-35024107.post-16913126212091066812011-04-25T10:24:00.000-05:002011-04-25T10:24:10.038-05:00EasterYou know your kid is getting sick when she has meltdown upon meltdown all weekend long...one so bad that she's hyperventilating. She won't tell you she's having problems breathing but you sure find out quick. So, we had a rough weekend, to the point where all weekend Max & Ruby watching was taken away and I was pretty sure the Easter Bunny wasn't going to visit but in the end I know that being 3 and having a hard time breathing is a decent excuse for second chances. We had a better Easter, especially since she slept in instead of going to Mass (which we both needed). Needless to say, the EB did come and he brought her the Jeep that Santa got on sale during Christmas...good thing because it is small and it fits right now. She drives like a maniac and hasn't mastered steering or braking. All in good time though. She calls it her "Beep". <br />
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This week is TAKS testing. YUCK! I get to be a test administrator, lucky me. I'll be glad when this week if over. We also get to go to National Wish Day this Friday at Morgan's Wonderland, which we are excited about. Fifteen more days until Gracie's cath. UGH! We have been talking about that lately. I don't want to sugar-coat it and I want her to know it's coming. I always tell her about those types of things and I don't lie about them. We talk about how scary it is and that I'll be there to help her. I also think of treats for her....like I have a Max & Ruby DVD for the cath. For the surgery we'll do some sort of surprise every day while we are in the hospital. I have also talked about why we are doing this too that she has a heart that is special and needs extra help. I know it frustrates her because she wants to be like everybody else. But we take it a day at a time. She was pushing her baby, Kiki in her stroller the other day and I thought, "Will she have the opportunity to be a mommy?" and "She can adopt if she wants.." Who knows what the future holds for any of us.<br />
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