Friday, July 25, 2008
A brief update on Miss Priss Current mood: adventurous
We finally got the phone call from Macy Jane's cardiologist last Saturday night! MJ's conduit that was narrowed in April and restretched has once again become narrowed. She also has a few places in the distal parts of her pulmonary arteries that are narrowed again. The great news is that her heart's pumping capabilities is still excellent! We knew that the conduit would probably be narrowed again, it's just the nature of the beast with these things. However, towards the end of the conversation, Dr. Joshi informed me that Lebonheur recruited a world famous top-notch heart surgeon to join the staff in September. He told me that and told me that he highly recommends us having her next heart surgery right here in Memphis. The conduit change out, eventhough it is through open heart surgery, is a pretty common surgery...unlike her first operations, the Unifocalization. I told him that we have trusted his judgement calls from day one and if he could tell me that if it were his child he would let the new doctor operate on, then we would feel comfortable.
We have not made our minds up 100%, I would of course want to meet the new surgeon, and hopefully be able to talk with him. However, the flip side is this. We would have all of our support systems in Memphis and around the area, Steve wouldn't have to miss any work, I could work if I had to, we wouldn't have to deal with the strange culture of California, and basically it just boils down to this. Besides the fact that it is easier on us as MJ's parents, the most important thing is that I KNOW beyond a shadow of doubt that MJ would receive excellent care post-op at LeBonheur.
Most of you, if you read my blogs or talked with me in California, know that we had a terrible time with the way that MJ was cared for after her open heart surgeries in California. We had a handful of nurses that we grew attached to and one doctor besides Dr. Hanley that we liked and trusted. That isn't so great considering how many doctors and nurses took care of MJ. However, with the exception of a few nurses at LeBonheur, we have always liked and trusted the staff there. I know that when MJ comes out of the OR, Dr. Cabrera will take care of her like she were his own. I also know that the CVICU nurses and 7-west nurses are excellent. I have more peace about them taking care of my child than people across the country that are there for their $$ (some not all!)
I have been so busy since I talked with Dr. Joshi that I haven't researched this new doctor. The other option, which is still being discussed, is whether or not her conduit can be stented open during a heart cath. Dr. Joshi is discussing that with the heart cath docs next week. If so and it works, MJ might not have to have surgery for a year, hopefully. We are praying for that, but know that surgery is also very much an option. Either way, if it is a heart cath, that will be done in August or September, and surgery would be after september if we go that route.
Well, MJ is getting cranky so I am going to put her down. I will update on some more stuff later as time is available. Me, my mom, and MJ drove to Florida yesterday to help my sister and brother in law move into their first house. I will do anything to get back to Florida.....even if it involves moving
Please keep us and MJ's doctors in your prayers as we have dicisions to make. As always, we appreciate that. OH! MJ has been sitting up on her own for months now, but hasn't been able to go from laying down to sitting up by herself. However, over the past few days she has been sitting herself up! YAY!!!! Huge answer to prayer. She is also taking bites of food now....not huge amounts, but at least it is something!!!! She is crawling everywhere and in toeverything. She also starts therapy in2 weeks and we hope she will be walking by Christmas. I have my fingers crossed that that is a realistic goal Things have been going so well for her lately, I only pray that they continue that way!!
Much Love,
Bethany
Friday, July 25, 2008
Thursday, July 17, 2008
Thursday, July 17, 2008
Just to clear some things up...... Current mood: lazy
It was brought to my attention today that my status updates on here seem to be directed at certain people on my friend's list. I would just like to clear that up. My status updates are not about people on here, unless I specifically state your name. If I have something not so nice to say about one of my friends on here, I wouldn't be stupid enough to post something so that that person could see it. (I will just tell Steve about it, ) If I post an update about something and you think that I am referring to you, odds are I am not. Contrary to what some may think, I don't look at every one of my friends page daily, weekly, or even monthly. It is pure coincidence if I say something that you feel is attacking you.
THAT'S all I am saying about that!
Today has been pretty lazy daisy. Both MJ and I slept off and on in the guest room together (I love having her as a snuggle bunny every once in a while!!) and then we spent the afternoon on the couch watching tv and sleeping. Steve took over for me while I ran to wal-greens for some meds and grabbed us some dinner. However, I think that Steve is catching what I have. I sound like I swallowed a bullfrog (croaking when I talk) and now he is starting to sound like that. I hope I am better by Friday so I can go to work!
Macy Jane is hanging in there. I am not sure what teeth she is cutting now, but she is in the middle of her throw-up marathon, which means there are some teeth somewhere in that mouth making their way to the surface. I think that I would almost rather her have diarrhea than this throwing up stuff. She is drooling like a bulldog and it is so thick.....which is what I think is making her sick to her tummy. However, she is sleeping really well next to me right now so maybe today was the last day. It was day 3 of it and it usually doesn't last more than 4. She is normally all over the place and doesn't want to be held a lot but today she didn't want to be put down. Good for me though because I get to hold her like she's a newborn...haha.
I called Dr. Joshi's office today for the MRI results. I didn't hear back from them, but hopefully no news is good news and he will call tomorrow telling me that she looks great and doesn't need any surgery or tests for 6 months. OH HOW NICE THAT WOULD BE! I am praying hard for those words.
Well, I need to get my butt in the bed in case MJ wakes up super early wanting to start the day. I hope that everyone is doing ok and enjoying their summer!!!!
Much Love,
Bethany
Just to clear some things up...... Current mood: lazy
It was brought to my attention today that my status updates on here seem to be directed at certain people on my friend's list. I would just like to clear that up. My status updates are not about people on here, unless I specifically state your name. If I have something not so nice to say about one of my friends on here, I wouldn't be stupid enough to post something so that that person could see it. (I will just tell Steve about it, ) If I post an update about something and you think that I am referring to you, odds are I am not. Contrary to what some may think, I don't look at every one of my friends page daily, weekly, or even monthly. It is pure coincidence if I say something that you feel is attacking you.
THAT'S all I am saying about that!
Today has been pretty lazy daisy. Both MJ and I slept off and on in the guest room together (I love having her as a snuggle bunny every once in a while!!) and then we spent the afternoon on the couch watching tv and sleeping. Steve took over for me while I ran to wal-greens for some meds and grabbed us some dinner. However, I think that Steve is catching what I have. I sound like I swallowed a bullfrog (croaking when I talk) and now he is starting to sound like that. I hope I am better by Friday so I can go to work!
Macy Jane is hanging in there. I am not sure what teeth she is cutting now, but she is in the middle of her throw-up marathon, which means there are some teeth somewhere in that mouth making their way to the surface. I think that I would almost rather her have diarrhea than this throwing up stuff. She is drooling like a bulldog and it is so thick.....which is what I think is making her sick to her tummy. However, she is sleeping really well next to me right now so maybe today was the last day. It was day 3 of it and it usually doesn't last more than 4. She is normally all over the place and doesn't want to be held a lot but today she didn't want to be put down. Good for me though because I get to hold her like she's a newborn...haha.
I called Dr. Joshi's office today for the MRI results. I didn't hear back from them, but hopefully no news is good news and he will call tomorrow telling me that she looks great and doesn't need any surgery or tests for 6 months. OH HOW NICE THAT WOULD BE! I am praying hard for those words.
Well, I need to get my butt in the bed in case MJ wakes up super early wanting to start the day. I hope that everyone is doing ok and enjoying their summer!!!!
Much Love,
Bethany
Wednesday, July 16, 2008
Wednesday, July 16, 2008
My little one is not a baby anymore.... Current mood: chipper
I think today I finally realized that Macy Jane is not a baby anymore, she is now a toddler. The past 13 months has flown by, even though the first 6 months seemed SO long when actually going through them. Today, we put her carseat in the forward facing position, which officially means that she is a big girl now. She's been over twenty pounds since her birthday in May, but I wanted to make sure with her pediatrician that it was ok to change it.
Speaking of which, today was her checkup. It was during her checkup that I realized that she isn't a baby. Every doctor's visit up until now she hasn't minded if doctor's take the stethescope out and listen, or shine that big light in her ears, or stick that wooden thing down her throat. However, today she screamed bloody murder at all of the above. YAY. Not only did we scream, but we threw everything around us in the floor. On purpose. A temper tantrum?! From my sweet little MJ? Absolutely. Even her cry is different. It is so "big girlish" sounding. She is also just lots of fun these days. It seems like she is a sponge soaking up every noise, light, object, etc. She trully doesn't miss much!
She has now graduated to GoodStart 2! Yippee for her. Even bigger news, she ate 3 or 4 bites of mashed potatoes the other night!!!!! Like she actually kept them on her tongue and swallowed them. NOTHING was on her chin or her shirt. GO MJ! We have been working very hard with her daily trying to get her to eat. I think she is more receptive now to things with tastes and textures being in her mouth than ever before. You parents out there that can just pop a bottle in to your babies mouths or a spoon of food don't know how fortunate you are I would give my right arm if MJ would like to eat orally. I know that she will eventually get there and I will be there every step of the way cheering her on.
Her hair has become quite the challenge lately. I need to just cut the back of it to get the frizzy ends off of it. The front is bizarre as well. I am trying to grow it all out so that it will be one length but her bangs are always in her eyes. She's always had enough hair for hairbows, but for the past few months she takes them out and eats them or throws them down. I tricked her and put the bow on the opposite side but after a few days she got smart to me. However, I guess I should be grateful that she has a head full of hair and isn't bald!!! Also, I would like to know what color it is finally going to be. There is one patch that is really blonde, then the rest of it still has a red tint to it and then on the top it is really red. At what point is it all going to blend?! I think she will always have a little red in her hair, at least I hope she does.
Steve and I went to Wal-Mart after MJ's appointment for our grocery run. It was actually pretty enjoyable! I think it is the first time that we all three had ever been to wal-mart. However, by the time we made it to the grocery side I made an interesting discovery. I asked Steve if he thought that we would be the type of parents that let our child get a toy every time she went to the store with us. He looked at me and laughed because in our buggy was a giant ball that Steve wants to teach her to roll to him, a smaller ball that she can actually pick up and throw, and a few other little toys. God help us! She doesn't even ask for them yet and we buy them. Oh-well......we have fun doing that sort of stuff for her and with her. Something I thought was funny. We went down the aisle with deoderants on it and I had her stroller a little close to the shelf. I wasn't paying attention and before I knew it I heard some grunting and the stinker was halfway out of the stroller picking up a can of aersol deoderant. Silly girl. One of these days she is going to pick up something and I am not going to notice it until the security people at the door ask me about it. It was the child......honest!
Well, me and mom and MJ (and maybe my brother) will be headed back to Florida next week for about a week. My sister bought the house and they close on Friday!!! We are going down to help them move and get things settled in. That should be a lot of fun. I wanted Steve to go but there are 3 shifts that he can work extra so he chose to stay here. The money will be nice I guess.....to send to bills. Bleh!
Well, it is almost midnight and I don't feel well. I have a sore throat and just feel lowsy. I think MJ has something as well because not only is she teething but she also has a snotty nose and her eyes are watery looking. Please say a prayer that we will be better tomorrow!!! No more doctors and hospitals please!!!
Much Love,
Bethany
My little one is not a baby anymore.... Current mood: chipper
I think today I finally realized that Macy Jane is not a baby anymore, she is now a toddler. The past 13 months has flown by, even though the first 6 months seemed SO long when actually going through them. Today, we put her carseat in the forward facing position, which officially means that she is a big girl now. She's been over twenty pounds since her birthday in May, but I wanted to make sure with her pediatrician that it was ok to change it.
Speaking of which, today was her checkup. It was during her checkup that I realized that she isn't a baby. Every doctor's visit up until now she hasn't minded if doctor's take the stethescope out and listen, or shine that big light in her ears, or stick that wooden thing down her throat. However, today she screamed bloody murder at all of the above. YAY. Not only did we scream, but we threw everything around us in the floor. On purpose. A temper tantrum?! From my sweet little MJ? Absolutely. Even her cry is different. It is so "big girlish" sounding. She is also just lots of fun these days. It seems like she is a sponge soaking up every noise, light, object, etc. She trully doesn't miss much!
She has now graduated to GoodStart 2! Yippee for her. Even bigger news, she ate 3 or 4 bites of mashed potatoes the other night!!!!! Like she actually kept them on her tongue and swallowed them. NOTHING was on her chin or her shirt. GO MJ! We have been working very hard with her daily trying to get her to eat. I think she is more receptive now to things with tastes and textures being in her mouth than ever before. You parents out there that can just pop a bottle in to your babies mouths or a spoon of food don't know how fortunate you are I would give my right arm if MJ would like to eat orally. I know that she will eventually get there and I will be there every step of the way cheering her on.
Her hair has become quite the challenge lately. I need to just cut the back of it to get the frizzy ends off of it. The front is bizarre as well. I am trying to grow it all out so that it will be one length but her bangs are always in her eyes. She's always had enough hair for hairbows, but for the past few months she takes them out and eats them or throws them down. I tricked her and put the bow on the opposite side but after a few days she got smart to me. However, I guess I should be grateful that she has a head full of hair and isn't bald!!! Also, I would like to know what color it is finally going to be. There is one patch that is really blonde, then the rest of it still has a red tint to it and then on the top it is really red. At what point is it all going to blend?! I think she will always have a little red in her hair, at least I hope she does.
Steve and I went to Wal-Mart after MJ's appointment for our grocery run. It was actually pretty enjoyable! I think it is the first time that we all three had ever been to wal-mart. However, by the time we made it to the grocery side I made an interesting discovery. I asked Steve if he thought that we would be the type of parents that let our child get a toy every time she went to the store with us. He looked at me and laughed because in our buggy was a giant ball that Steve wants to teach her to roll to him, a smaller ball that she can actually pick up and throw, and a few other little toys. God help us! She doesn't even ask for them yet and we buy them. Oh-well......we have fun doing that sort of stuff for her and with her. Something I thought was funny. We went down the aisle with deoderants on it and I had her stroller a little close to the shelf. I wasn't paying attention and before I knew it I heard some grunting and the stinker was halfway out of the stroller picking up a can of aersol deoderant. Silly girl. One of these days she is going to pick up something and I am not going to notice it until the security people at the door ask me about it. It was the child......honest!
Well, me and mom and MJ (and maybe my brother) will be headed back to Florida next week for about a week. My sister bought the house and they close on Friday!!! We are going down to help them move and get things settled in. That should be a lot of fun. I wanted Steve to go but there are 3 shifts that he can work extra so he chose to stay here. The money will be nice I guess.....to send to bills. Bleh!
Well, it is almost midnight and I don't feel well. I have a sore throat and just feel lowsy. I think MJ has something as well because not only is she teething but she also has a snotty nose and her eyes are watery looking. Please say a prayer that we will be better tomorrow!!! No more doctors and hospitals please!!!
Much Love,
Bethany
Friday, July 11, 2008
Friday, July 11, 2008
Macy Jane’s MRI Current mood: tired
We are finally back at home....safe and sound. My Miracle Baby is sleeping soundly in her bed......so peaceful It has been a long day of sitting and waiting, but things went okay. Macy Jane has at least 30 puncture marks in her arms, legs, and neck. From what you may ask? IV starts! 30 freaking times!!!! I was so shocked when I saw her poor pin cushion of a body. I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?! And before that, she was stuck for labs one time since December. It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her. Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her. She has no idea what happened to her. Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you! She won't be high all night long now! When she has narcotics she doesn't sleep for what seems like days. Anyways.....
Dr. Joshi made a special trip to see us after the MRI was over. He gave us a preliminary result based off of a few pictures that he saw. However, he had over 3,000 different pictures to look at between now and Monday before we get the official word. So basically I am saying that what we were told today may change on Monday or more stuff will be added. Whew. Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs. He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images. Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet. So, that part is all pretty good news. We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all. We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options. How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?! We are all praying earnestly for that. She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards. However, we are not getting our hopes up. Whatever happens is God's will, no matter what.
Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with ) God has blessed us more than our share and I can't wait to see how He is going to use MJ. It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis. I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday. She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me. Gosh....I love her! What a tough little girl she really is. To have been through so much and to be so happy.....still. I am trully amazed.
Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small. Because of that they gave her steriods to help with the swelling in her airway. Thankfully she seems to be fine. We will of course watch her closely tonight, but she played all afternoon like nothing happened. If you think of her, please say a prayer that she will sleep well tonight. Thats what she needs the most!
I am going to be busy for the next few days. I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday. Finally on Wednesday I think I will take a break and enjoy life That is unless something else comes up!
Well, I am going to get things ready for work tomorrow. I hope everyone is doing well and thanks to those of you who prayed for us. Keep it up!
Much Love,
Bethany Jane
Macy Jane’s MRI Current mood: tired
We are finally back at home....safe and sound. My Miracle Baby is sleeping soundly in her bed......so peaceful It has been a long day of sitting and waiting, but things went okay. Macy Jane has at least 30 puncture marks in her arms, legs, and neck. From what you may ask? IV starts! 30 freaking times!!!! I was so shocked when I saw her poor pin cushion of a body. I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?! And before that, she was stuck for labs one time since December. It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her. Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her. She has no idea what happened to her. Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you! She won't be high all night long now! When she has narcotics she doesn't sleep for what seems like days. Anyways.....
Dr. Joshi made a special trip to see us after the MRI was over. He gave us a preliminary result based off of a few pictures that he saw. However, he had over 3,000 different pictures to look at between now and Monday before we get the official word. So basically I am saying that what we were told today may change on Monday or more stuff will be added. Whew. Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs. He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images. Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet. So, that part is all pretty good news. We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all. We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options. How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?! We are all praying earnestly for that. She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards. However, we are not getting our hopes up. Whatever happens is God's will, no matter what.
Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with ) God has blessed us more than our share and I can't wait to see how He is going to use MJ. It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis. I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday. She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me. Gosh....I love her! What a tough little girl she really is. To have been through so much and to be so happy.....still. I am trully amazed.
Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small. Because of that they gave her steriods to help with the swelling in her airway. Thankfully she seems to be fine. We will of course watch her closely tonight, but she played all afternoon like nothing happened. If you think of her, please say a prayer that she will sleep well tonight. Thats what she needs the most!
I am going to be busy for the next few days. I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday. Finally on Wednesday I think I will take a break and enjoy life That is unless something else comes up!
Well, I am going to get things ready for work tomorrow. I hope everyone is doing well and thanks to those of you who prayed for us. Keep it up!
Much Love,
Bethany Jane
Wednesday, July 9, 2008
Wednesday, July 09, 2008
An overdue update! Current mood: blah
Things are going ok in the Wiles household. It has trully been a really busy summer so far and it doesn't look like it is slowing down anytime soon!! We went to Florida for 11 days and stayed on Pensacola Beach in an awesome beach house with my entire family. It was gorgeous every day except for one. MJ seemed to like the water, alot. At first we sat her in the sand and let the tide come up on her....she wasn't too sure what to think about that We bought a kiddie froggie pool and put some water in it for her under the giant umbrella so that she wouldn't get too hot and burned. She loved it!
While we were there, my sister and brother-in-law found a house to buy! The market in Florida sucks right now because of the hurricanes etc. so I am glad that they could find a house! They are hoping to close next Friday, if they do, me and my mom and MJ will head back down there to help them move and get settled in.....and maybe go to the beach again That is if I can switch my days at work around.
MJ's health seems to be doing ok. She is getting in to everything and showing me her personality more and more each day. She has to go to LeBonheur in the morning for a cardiac MRI. The MRI itself is not a big deal, but they have to give her general anesthesia and put her on the ventilator to control her breathing and hold her breath for her in certain parts of the test. The results of this test will show us how much time we have until we need to go to California again. I have noticed that she breaths a little harder at times, but then again she is crawling around a lot more as well and using more energy. She is still fed by G-tube (lots of people have been asking me about that lately?!) but in the past week or so, she has actually let me put some baby food in her mouth without her immediately trying to throw it up. She also swallowed some gerber graduate puffs!! She coughed, but at least she didnt puke them up!!! She STILL isn't in any therapy. I have been calling TEIS every single day and leaving her coordinator messages. They have until Tuesday to call me back or else I am leaving it up to her pediatrician to get her in therapy. I am so aggravated because it has been 6 freaking months since I called them to refer MJ. That is entirely too long! I hate the state of Tennessee when it comes to having a sick child. The just SUCK.
If MJ's health remains good, Steve and I are going on a cruise in January with some friends from work. We had planned on taking a cruise each year to celebrate our anniversary and of course last year didn't happen, but hopefully Jan 09 we will be gone! I don't know how I will handle being away from MJ for 7 days, but we need a vacation together....away from all of the stresses of life.
Hopefully I will be able to upload some pictures of our vacation and the 4th on here. Today I am busy cleaning the house top to bottom. BTW.....just have to mention this and see if it is crazy to anyone else but me. Apparently yesterday I left my wallet at Target. I checked out and paid so I must have either left it at the register or it fell out of MJ's diaer bag in the buggy. Well, I didn't even realize it until they called today letting me know that they found it. So, I told the girl that Steve was in town today running errands and that I would like for him to pick it up and she proceeded to tell me that she couldn't give it to him. Only me. I told her that I had to have my wallet tomorrow because it has MJ's insurance cards in it and that I couldn't get to Target today because Steve has the car seat and was like 5 minutes from target. She continued to say that she couldn't give it to anyone else. I offered to tell her everything that was in the wallet, my SS number (since that card was in there), I even told her my driver's license number?!?! AND They called my house number.......obviously I am who I say I am if I can rattle all of that information off in twenty seconds. I was so frustrated with that stupid woman. Finally she talked it over with another manager and decided that Steve could pick it up if he could show ID that he was who he said he was and prove that we live at the same address. For crying out loud! This incident and their return policy are pretty close to making me not want to shop there.....but I love their stuff! Grrrr.
Please, if you think of it, say a prayer for MJ tomorrow. I know that she will do just fine. The only thing that will stop the MRI is her throwing up. Her reflux has gotten so much better over the past 2 months. However, whenever she is cutting teeth (which is like every other week) she will throw up for 3-4 days and then be fine for a week and a half with no throw ups. Well, today she threw up once and usually that means that tomorrow she will start the non-stop throwing up. I sure hope not because I have been dreading this test and just want to get it over and done! Say a little prayer
Well, the dishwasher is done, so I need to get the kitchen finished up! I hope everyone is doing well.
Much Love,
Bethany
An overdue update! Current mood: blah
Things are going ok in the Wiles household. It has trully been a really busy summer so far and it doesn't look like it is slowing down anytime soon!! We went to Florida for 11 days and stayed on Pensacola Beach in an awesome beach house with my entire family. It was gorgeous every day except for one. MJ seemed to like the water, alot. At first we sat her in the sand and let the tide come up on her....she wasn't too sure what to think about that We bought a kiddie froggie pool and put some water in it for her under the giant umbrella so that she wouldn't get too hot and burned. She loved it!
While we were there, my sister and brother-in-law found a house to buy! The market in Florida sucks right now because of the hurricanes etc. so I am glad that they could find a house! They are hoping to close next Friday, if they do, me and my mom and MJ will head back down there to help them move and get settled in.....and maybe go to the beach again That is if I can switch my days at work around.
MJ's health seems to be doing ok. She is getting in to everything and showing me her personality more and more each day. She has to go to LeBonheur in the morning for a cardiac MRI. The MRI itself is not a big deal, but they have to give her general anesthesia and put her on the ventilator to control her breathing and hold her breath for her in certain parts of the test. The results of this test will show us how much time we have until we need to go to California again. I have noticed that she breaths a little harder at times, but then again she is crawling around a lot more as well and using more energy. She is still fed by G-tube (lots of people have been asking me about that lately?!) but in the past week or so, she has actually let me put some baby food in her mouth without her immediately trying to throw it up. She also swallowed some gerber graduate puffs!! She coughed, but at least she didnt puke them up!!! She STILL isn't in any therapy. I have been calling TEIS every single day and leaving her coordinator messages. They have until Tuesday to call me back or else I am leaving it up to her pediatrician to get her in therapy. I am so aggravated because it has been 6 freaking months since I called them to refer MJ. That is entirely too long! I hate the state of Tennessee when it comes to having a sick child. The just SUCK.
If MJ's health remains good, Steve and I are going on a cruise in January with some friends from work. We had planned on taking a cruise each year to celebrate our anniversary and of course last year didn't happen, but hopefully Jan 09 we will be gone! I don't know how I will handle being away from MJ for 7 days, but we need a vacation together....away from all of the stresses of life.
Hopefully I will be able to upload some pictures of our vacation and the 4th on here. Today I am busy cleaning the house top to bottom. BTW.....just have to mention this and see if it is crazy to anyone else but me. Apparently yesterday I left my wallet at Target. I checked out and paid so I must have either left it at the register or it fell out of MJ's diaer bag in the buggy. Well, I didn't even realize it until they called today letting me know that they found it. So, I told the girl that Steve was in town today running errands and that I would like for him to pick it up and she proceeded to tell me that she couldn't give it to him. Only me. I told her that I had to have my wallet tomorrow because it has MJ's insurance cards in it and that I couldn't get to Target today because Steve has the car seat and was like 5 minutes from target. She continued to say that she couldn't give it to anyone else. I offered to tell her everything that was in the wallet, my SS number (since that card was in there), I even told her my driver's license number?!?! AND They called my house number.......obviously I am who I say I am if I can rattle all of that information off in twenty seconds. I was so frustrated with that stupid woman. Finally she talked it over with another manager and decided that Steve could pick it up if he could show ID that he was who he said he was and prove that we live at the same address. For crying out loud! This incident and their return policy are pretty close to making me not want to shop there.....but I love their stuff! Grrrr.
Please, if you think of it, say a prayer for MJ tomorrow. I know that she will do just fine. The only thing that will stop the MRI is her throwing up. Her reflux has gotten so much better over the past 2 months. However, whenever she is cutting teeth (which is like every other week) she will throw up for 3-4 days and then be fine for a week and a half with no throw ups. Well, today she threw up once and usually that means that tomorrow she will start the non-stop throwing up. I sure hope not because I have been dreading this test and just want to get it over and done! Say a little prayer
Well, the dishwasher is done, so I need to get the kitchen finished up! I hope everyone is doing well.
Much Love,
Bethany
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