Tuesday, August 10, 2010
Buddy Walk 2010
Hey Everyone! Our family decided to participate in the 10th annual Northeast Ohio Buddy Walk this year. Surprisingly the response via donations has been very productive! Our team name is Rees's Pieces and we will be walking in honor of our little angel Liliana on Saturday, August 21st at 10am. We are really looking forward to it! If anyone would like to donate or come out and support us by walking with our team please click on the link from the widget on the side of my blog to get more information. Today is the last day that the walker registration will be $5.00 so if you want to walk it would be a good idea to jump on that today. Thanks everyone for all your love and support!
Thursday, August 5, 2010
See How I've Grown...and my Sissy too!
I turned 2 on June 6 and I have been sitting up for over 6 months!
I went on a cool boat ride at Aunt Traci's over the 4th of July! Wheeee! It was fun!
This is my mobile stander that helps me put weight on my feet. My school is letting Mommy borrow it for the summer. I'm getting stronger everyday!
Mommy and Me when we visited Aunt Traci's over the 4th of July!
I LOVE my Big Sissy! She's the best!
I go to school now like a BIG girl, but in the summer I go to my school's playgroups! They are sooo much FUN!
My Big Sissy Gwyneth had her dance recital and it was really cool!
Tuesday, April 27, 2010
What Can Possibly Happen Next?
Well, it has been an interesting week to say the least. So many depressing things in the blog world and in real life. Sigh...well it tells me that trusting in the Lord is the only way we can survive.
Lily has been sick since last Thursday. It is really strange. She will be crabby and throwing up or having the runs one minute, then totally fine the next. She also has been running a temperature off and on. It's wearing me out. I've cleaned up more throw up and poop in the past few days then I can count. I thought she was starting to finally get over it today but then she threw up after we back from picking Gwynny up from preschool. I got her an appointment tomorrow morning just to get her checked out. Hoping for the best.
And another thing. Last night Bill's grandmother was taken to the hospital with chest pains and stomach pains. Bill's parents were out of town so he went up to the hospital. He stayed with her till he got some news from the doctor's and they told him that she had some fluid on her lungs so they were treating it with lasix. Bill's parents returned home today and we were given the news that this is the beginning of congestive heart failure for her. I was so crushed. I know she is 93 years old and has lived a long and prosperous life but it still hit home. All the emotions that I felt when my dad passed away came back and I just remember how awful it was seeing him dying. It made me cry. Hoping that things will start looking up tomorrow.
Lily has been sick since last Thursday. It is really strange. She will be crabby and throwing up or having the runs one minute, then totally fine the next. She also has been running a temperature off and on. It's wearing me out. I've cleaned up more throw up and poop in the past few days then I can count. I thought she was starting to finally get over it today but then she threw up after we back from picking Gwynny up from preschool. I got her an appointment tomorrow morning just to get her checked out. Hoping for the best.
And another thing. Last night Bill's grandmother was taken to the hospital with chest pains and stomach pains. Bill's parents were out of town so he went up to the hospital. He stayed with her till he got some news from the doctor's and they told him that she had some fluid on her lungs so they were treating it with lasix. Bill's parents returned home today and we were given the news that this is the beginning of congestive heart failure for her. I was so crushed. I know she is 93 years old and has lived a long and prosperous life but it still hit home. All the emotions that I felt when my dad passed away came back and I just remember how awful it was seeing him dying. It made me cry. Hoping that things will start looking up tomorrow.
Friday, April 23, 2010
Busy, Busy Busy...As usual!
Well, I haven't been doing a very good job of keeping up with my blog. I guess I'm lucky if I get at least one post a week up. This was another routine, but busy week. We had preschool for Gwynny every morning and Lily had speech therapy yesterday morning. In between I was doing errands during the day and then tutoring almost every evening. Tutoring has been going well and I thank the Lord for my small contribution to my family. It is better than nothing and I now feel like I am getting some satisfaction from my job, not like at Archiver's. The two kids I tutor are great kids. One is a first grader and one a fourth grader. They make me laugh which is very important for me.
I have been struggling with what to do with Gwynny for Kindergarten. I thought I had it all figured out and was planning to hold her back another year until I talked to her preschool teacher. Long story, short I am sticking to me guns and keeping her back another year. I would much rather she be one of the older kids in her class than the youngest. I think that will make a bigger difference in her success in school.
In the meantime, I was told that Lily would not be able to start the county's Toddler program until fall because they didn't foresee any openings. Well, Praise the Lord, I got a phone call the other day stating that Lily will be able to start on May 4th! WOW, did that throw me for a loop! Now I have tons of paperwork to get filled out by me and by her docs. It will only be for about 4 weeks but it will be worth it I'm sure. Lily will have the opportunity to socialize with other children and hopefully learn a few new things. Also it will give me a sense of what to expect for fall when she will be attending there the entire school year.
Another little tidbit on Lily she has been sitting up pretty consistently and I even caught her for the first time today going from laying down to a sitting up position using her side and her arm. It was so COOL to watch her! She is growing by leaps and bounds! She also does the wonderful flexible move that I know so many of you are familiar with and that is where she is sitting up and wants to go back into a laying position. She leans forward and swings her legs around to the sides so she is then on her belly. Amazing!
Well, that's my busy update for the week! I am hoping to post some pictures soon so you all can see how BIG she has gotten and how she has changed.
I have been struggling with what to do with Gwynny for Kindergarten. I thought I had it all figured out and was planning to hold her back another year until I talked to her preschool teacher. Long story, short I am sticking to me guns and keeping her back another year. I would much rather she be one of the older kids in her class than the youngest. I think that will make a bigger difference in her success in school.
In the meantime, I was told that Lily would not be able to start the county's Toddler program until fall because they didn't foresee any openings. Well, Praise the Lord, I got a phone call the other day stating that Lily will be able to start on May 4th! WOW, did that throw me for a loop! Now I have tons of paperwork to get filled out by me and by her docs. It will only be for about 4 weeks but it will be worth it I'm sure. Lily will have the opportunity to socialize with other children and hopefully learn a few new things. Also it will give me a sense of what to expect for fall when she will be attending there the entire school year.
Another little tidbit on Lily she has been sitting up pretty consistently and I even caught her for the first time today going from laying down to a sitting up position using her side and her arm. It was so COOL to watch her! She is growing by leaps and bounds! She also does the wonderful flexible move that I know so many of you are familiar with and that is where she is sitting up and wants to go back into a laying position. She leans forward and swings her legs around to the sides so she is then on her belly. Amazing!
Well, that's my busy update for the week! I am hoping to post some pictures soon so you all can see how BIG she has gotten and how she has changed.
Wednesday, April 14, 2010
A Trip to the ER
Last night around 10:30 I heard this barking and gasping sound coming from upstairs. I go up and Bill and I found Gwyneth practically gasping for air. We got out her inhaler and had her use it but she was so worked up that it wasn't helping. We had her go outside in the cool night air and that didn't seem to do the trick either. We then thought the best thing to do was to go to the ER. So Bill got dressed and we got Gwyneth together and off they went.
Meanwhile, all the commotion woke up Lily and she was freaking out in her crib! I went in and tried to calm her down but ended up turning on her little fish tank and letting her cry herself back to sleep after about 5-10 minutes. I then sat there waiting for a text or call from Bill letting me know what was going on with Gwynny. Finally, he texted and said that the nurse was checking them in. Unfortunately 2 ambulances showed up in the meantime so that caused an even longer wait. After awhile they were in a room and she was seen. They took x-rays of her lungs and then gave her a breathing treatment and some steriods. Bill said she was a very good girl. She did cry when they started the breathing treatment because it made her cough. It was for asthma. They then switched to a breathing treatment for croup and she was fine. So all said and done she has the croup! They sent them home finally and it was 1:30Am when they arrived back home. Man, am I beat today! Of course, Lily has no idea what was going on and she slept the best of all of us. She was up at the crack of dawn! Arrrrgghhh! Well, thank goodness Gwynny is ok. Kept her home today from preschool and now I'm trying to keep her and Lily entertained. What is a mother to do? Looking forward to a better day tomorrow!
Meanwhile, all the commotion woke up Lily and she was freaking out in her crib! I went in and tried to calm her down but ended up turning on her little fish tank and letting her cry herself back to sleep after about 5-10 minutes. I then sat there waiting for a text or call from Bill letting me know what was going on with Gwynny. Finally, he texted and said that the nurse was checking them in. Unfortunately 2 ambulances showed up in the meantime so that caused an even longer wait. After awhile they were in a room and she was seen. They took x-rays of her lungs and then gave her a breathing treatment and some steriods. Bill said she was a very good girl. She did cry when they started the breathing treatment because it made her cough. It was for asthma. They then switched to a breathing treatment for croup and she was fine. So all said and done she has the croup! They sent them home finally and it was 1:30Am when they arrived back home. Man, am I beat today! Of course, Lily has no idea what was going on and she slept the best of all of us. She was up at the crack of dawn! Arrrrgghhh! Well, thank goodness Gwynny is ok. Kept her home today from preschool and now I'm trying to keep her and Lily entertained. What is a mother to do? Looking forward to a better day tomorrow!
Wednesday, April 7, 2010
Follow-Up on Surgery #4: "Yeah God!"
Today was an uneventful day and I am glad for that. After picking Gwynny up from preschool we headed back down to the Cleveland Clinic to have the surgical nurse take a look at Lily's incision and change her bandage from her surgery Monday. The incision looks great! It is about 2 inches long and it is healing up nicely. She gave me some 2x2's to take home with me so I can change Lily's bandages. They don't need to see her again till she comes in for her 6 month cardiology appointment and that is just fine with me. She has been tolerating things considerably well. I am not surprised. After everything that Lily has been through this was probably like a cake walk to her.
I took Gwynny up to church tonight for her Rainbows class and I had a lot of people asking about Lily. I had only good news to report for a change! It was so refreshing! We do something in our church every Sunday morning called "Yeah God!" and basically what it is, is people get up and talk about anything good that God has been doing in their life lately. I can't wait to get up and tell everyone this Sunday about the wonderful thing that he did for Lily this week! I am about 99.9% sure that this is the problem we have been experiencing with the leaking of the balloon on the mic-key button so "Yeah God!"
I took Gwynny up to church tonight for her Rainbows class and I had a lot of people asking about Lily. I had only good news to report for a change! It was so refreshing! We do something in our church every Sunday morning called "Yeah God!" and basically what it is, is people get up and talk about anything good that God has been doing in their life lately. I can't wait to get up and tell everyone this Sunday about the wonderful thing that he did for Lily this week! I am about 99.9% sure that this is the problem we have been experiencing with the leaking of the balloon on the mic-key button so "Yeah God!"
Monday, April 5, 2010
Surgery #4: Remove Pacing Wire
Well, it has been a long time since I have updated my blog. Having a hard time finding the time or energy to keep up with it. Today was definitely a very important day in our lives and very blog worthy so I had to make the time. Lily went through her 4th surgery today and she isn't even 2 years old yet! I know this may seem like nothing to some but with Lily she constantly keeps us on our toes around here. Let me back up a bit...I'm sure that many of you remember me continually complaining about Lily's mic-key buttons failing with the balloons popping. Well, that has not changed over the past few months. They continued to fail at a rate of approximately 1 to 2 weeks for the duration of 10 months. It has been nothing but a mystery to the docs at the clinic but a complete frustration for us and many phone calls to Kimberly Clark the manufacturer, but alas we think we found the culprit 2 weeks ago.
It was a Monday morning and I was going about my usual routine and went in to get Lily up for the day. I found her mic-key button out of her belly with no idea of when it came out. What was even worse was that I was unsuccessful at putting in a new one. So off we went down to the clinic to have the nurses give it a try. Cha-ching! They got it in but the GI doc wanted us to take Lily down to x-ray to have them check placement. Several hours later we were able to get in and have x-rays done. Everything looked great so the radiologist told us we could go ahead and feed Lily so we did. Later that evening I received a phone call from the GI doc stating that the feeding tube was fine but that they had found something else and that she needed to talk to me. By this time it was too late to contact her so I had to settle for worrying about what they found all night until I was able to talk to her the next morning.
The next morning I spoke with the GI doc and she informed me that Lily had a piece of a pacing wire embedded in her intestine. Say what? She explained to me that it had to do with her open heart surgeries and that they sometimes put pacing wires in place in case the heart gets an irregular rhythm and they need to use a pace maker. Well, in Lily's case they didn't need a pace maker so they eventually removed them and when they did they either pulled them or cut them off. Not sure what exactly happened in Lily's case but either way this wire was in her body and the GI doc felt that this was the reason why the balloons kept popping on her mic-key buttons. Makes sense right? Not to the surgeon and the cardiologist. They felt it was too far away from the balloon to be the culprit, but after talking with the GI doc and me calling and doing a lot of complaining they decided that this surgery was back on and that that wire needed to come out.
We arrived at the Cleveland Clinic at approximately 9:45am this morning and checked in a the J1 desk for admissions. We had to report to G51 where the PICU had been moved recently so they can remodel the old one. SWEET! Anyways, we immediately saw a very familiar face of our favorite nurse Ellen when we arrived and that made me feel so much better. We also were joined by Pastor Tom from our church and my good friend Kathie. Gotta love the support! The waiting around took the longest but eventually they took Lily back for her surgery. Lily was her same friendly, spunky self while waiting in her room. She was waving, squalling, and yelling out "Bye Gamma" and "Bye Gampa" to people coming and going! Those are her buzz words lately! She also did lots of sitting up and clapping for everyone! All the nurses and staff were just commenting on how great she looked and how cute she was.
Long story, short, the surgeon Dr. Stuart explained that he would be making an incision at the base of Lily's incision from her heart surgeries and using x-ray to help guide him to the location of the wire and remove it. He seemed very confident that he would be able to get it all. When he arrived at the waiting room over an hour later he brought me the wire in a container! This thing was 2 1/2 to 3 inches long, no doubt! I was amazed and I think he was too! He had a little bit of difficulty getting it out because it was deeper into her tissue than he had anticipated so he had to make her incision a little bigger. However, he got that stinkin' thing out and praise the Lord I am very hopeful that we will not be experiencing any further problems with the mic-key buttons. That said...
Lily was able to leave the hospital around 3:30 and came right home. She was a bit cranky this evening which is understandable since the incision is a little deeper than what was planned. All in all she is such a trooper! She did great! She is such a wonderful little girl and we love her SO much! I don't know what I would do without her! I can only thank God for his goodness in my life. I can only praise him for keeping me sane and helping me to raise this beautiful little girl he has given me. I am so thankful and I am so grateful! She is asleep and resting comfortably in her crib! God Bless you little Lily! We love you so much!
It was a Monday morning and I was going about my usual routine and went in to get Lily up for the day. I found her mic-key button out of her belly with no idea of when it came out. What was even worse was that I was unsuccessful at putting in a new one. So off we went down to the clinic to have the nurses give it a try. Cha-ching! They got it in but the GI doc wanted us to take Lily down to x-ray to have them check placement. Several hours later we were able to get in and have x-rays done. Everything looked great so the radiologist told us we could go ahead and feed Lily so we did. Later that evening I received a phone call from the GI doc stating that the feeding tube was fine but that they had found something else and that she needed to talk to me. By this time it was too late to contact her so I had to settle for worrying about what they found all night until I was able to talk to her the next morning.
The next morning I spoke with the GI doc and she informed me that Lily had a piece of a pacing wire embedded in her intestine. Say what? She explained to me that it had to do with her open heart surgeries and that they sometimes put pacing wires in place in case the heart gets an irregular rhythm and they need to use a pace maker. Well, in Lily's case they didn't need a pace maker so they eventually removed them and when they did they either pulled them or cut them off. Not sure what exactly happened in Lily's case but either way this wire was in her body and the GI doc felt that this was the reason why the balloons kept popping on her mic-key buttons. Makes sense right? Not to the surgeon and the cardiologist. They felt it was too far away from the balloon to be the culprit, but after talking with the GI doc and me calling and doing a lot of complaining they decided that this surgery was back on and that that wire needed to come out.
We arrived at the Cleveland Clinic at approximately 9:45am this morning and checked in a the J1 desk for admissions. We had to report to G51 where the PICU had been moved recently so they can remodel the old one. SWEET! Anyways, we immediately saw a very familiar face of our favorite nurse Ellen when we arrived and that made me feel so much better. We also were joined by Pastor Tom from our church and my good friend Kathie. Gotta love the support! The waiting around took the longest but eventually they took Lily back for her surgery. Lily was her same friendly, spunky self while waiting in her room. She was waving, squalling, and yelling out "Bye Gamma" and "Bye Gampa" to people coming and going! Those are her buzz words lately! She also did lots of sitting up and clapping for everyone! All the nurses and staff were just commenting on how great she looked and how cute she was.
Long story, short, the surgeon Dr. Stuart explained that he would be making an incision at the base of Lily's incision from her heart surgeries and using x-ray to help guide him to the location of the wire and remove it. He seemed very confident that he would be able to get it all. When he arrived at the waiting room over an hour later he brought me the wire in a container! This thing was 2 1/2 to 3 inches long, no doubt! I was amazed and I think he was too! He had a little bit of difficulty getting it out because it was deeper into her tissue than he had anticipated so he had to make her incision a little bigger. However, he got that stinkin' thing out and praise the Lord I am very hopeful that we will not be experiencing any further problems with the mic-key buttons. That said...
Lily was able to leave the hospital around 3:30 and came right home. She was a bit cranky this evening which is understandable since the incision is a little deeper than what was planned. All in all she is such a trooper! She did great! She is such a wonderful little girl and we love her SO much! I don't know what I would do without her! I can only thank God for his goodness in my life. I can only praise him for keeping me sane and helping me to raise this beautiful little girl he has given me. I am so thankful and I am so grateful! She is asleep and resting comfortably in her crib! God Bless you little Lily! We love you so much!
Subscribe to:
Posts (Atom)