Friday, August 31, 2007
Finally! Current mood: exhausted
After about a month of "we are contacting Stanford", we finally have a date! Macy Jane will be undergoing open heart surgery on Wednesday, September 12th. I suppose I should be really nervous and anxious since I know the exact day, but I am not. Right now I have a peaceful feeling. I am sure I will be a nervous wreck the closer it gets, maybe reality hasn't hit me yet.
The plans that we know are this. Me and Macy Jane will be leaving via a private medical jet headed for SanFrancisco then Palo Alto either the 8th or 9th of September. She is scheduled to have a heart cath on Monday the 10th and based off of what it shows will determine what is done in surgery. She may have to have a staged repair, it all depends on how big her collateral arteries have grown. Hopefully we will have an exact date that we are leaving by Monday, but we at least know next weekend we will be in sunny northern california!
I booked my parents and Steven's flight tonight. My sister will also be joining us out there. Just let me tell you that the airlines these days are selfish and RUDE. They no longer do medical hardship flights, discounted flights for deaths, or open ended return flights. I had to book Steve and my moms ticket for staying 2 months because it is $100 every time that we change the date to return. Hopefully we will only have to change it ONCE. That s why I did it for 2 months with the hope that we would only be out there for 1. However, everyone has flights and they will be there on the 8th even if me and Macy Jane do not leave until the 9th. That's ok....they can get the rental car, put our name on the list for the Ronald McDonald house, or other housing available, and get to know the area a little if we aren't out there first.
Please continue to keep MJ in your prayers. She started throwing up formula again. Remember she had surgery on the 19th of July where they wrapped her stomach around her esophogus and apparently it has stretched out again, which we knew it would in time, but not this soon! It isn't too bad yet.....she only spits a little up. Just pray that this will stop or remain just a little bit.
On the 12th if any of you are able to pray all day, PLEASE do so. Only prayer is going to bring my MJ through this. We will know more about what we are up against on Monday the 10th. I pray for good news. I just long to bring MJ home and rock her to sleep in her new rocking chair (that is still in the box I might add) and feed her a bottle and just lay her in her own bed. It's the simple things that I want. I am not asking for a baby that sleeps through the night or laughs and giggles and talks, I just want to be able to bring MJ home and let her experience an environment besides the hospital. She has been such a trooper and is a VERY happy baby, she smiles all of the time. She has started to hold on to her rattle, and still trying so hard to coo and laugh. Maybe she is trying too hard. Some have said that she is delayed because she isn't cooing yet and can't hold her head up 100%, but to those people I say......give her a break! For 3 weeks of her life she has been on a breathing machine, sedated and she has not been able to lay on her tummy to gain head control etc. since she was 3 weeks old. Just because some book or website says that she is supposed to be able to do this and that.....doesn't mean that MJ can or should at this point. Once she has her heart surgery behind her, I have no doubt that she will pick right up and move right along. She simply does not have the energy right now to do to much activity....she gets worn out and falls asleep.
I went to dinner with some girls that I work with tonight and it was so much fun. Just to get out of the hospital for 3 hours and talk about something other than medical stuff is such a nice break. We now have the light at the end of the tunnel, but at the same time, we are preparing to enter another tunnel that is very dark, but this too shall pass. God's will is going to be done no matter what and He will give me and my family the grace and strength to get through it all. No, it isn't easy for me to say that and there are some days that I don't think like that, but there is always someone there to bring me back to where I need to be....focused on God's will.
Well, it is after 1am and I need to get some sleep while Sleeping Beauty is asleep. Right now she is dreaming and she coos and makes noises in her sleep....it is so cute to listen to her. I have been playing the game memory on our laptop and I let it keep me up too late. It is a good stress reliever though and wears my brain OUT! haha.
I will post the info about the foundation that people can donate to this weekend. God has really blessed us so far and we have enough to cover Steve's flight and our bills for a month. Yay! That is one less thing to worry about.
I hope everyone is doing well. Thanks for the prayers and please please please do not stop them now! God has been so good to us and I firmly believe it is because of each and every one of you praying for us. Goodnight!!
Friday, August 31, 2007
Thursday, August 23, 2007
Thursday, August 23, 2007
Our life in a few paragraphs Current mood: contemplative
Macy Jane continues to do well. She is such a happy baby (most of the time when the nurses aren't bugging her) and smiling more and more. Continues to be off of the oxygen for a week now, praise the Lord!
Reality hit hard today. Dr. Cabrera came in to see MJ and said that Dr. Joshi was calling a cardiologist at Stanford about transferring MJ out there, soon. Apparently Dr. Joshi was on the phone with the nurse today and getting lots of information and she said that Dr. Joshi should be coming by soon to tell us when we are headed to CA. Reality hit that D-day is really close and fast approaching. I had a weak moment of faith and started worrying about all of the what ifs and called my sister bawling. She talked to me and comforted me with scripture from the Bible and that really helped me. I Just cannot imagine life without my precious baby girl, my gift from God. For those of you that have been blessed with healthy children, hug them tight and thank God that you are blessed with a "normal" life and do not have to do through all of this. I am not saying woe is me or anything like that. I would not trade my life or my daughter for a perfectly healthy child. She is my miracle baby and God is teaching me a lot through this whole situation. Sometimes I get a twinge of jealousy when I hear of people having healthy babies and enjoying them at home, but God has been with us every day for the past 12 weeks, with 10 of those being at Lebonheur.
I do not think that Steve is going to be able to travel in CA. It just isn't working out and the more I think about it, the more I realize that I need him at Stanford with me and MJ. God has been providing for us financially to where we are set for the first month we are out there as far as expenses back home. Today, a nurse that Steve works with handed Steve a check for $!,000!! Unbelievable. God is so good.
In other news! God has provided a photographer for us. Mr. Perry (father of a friend from high school) is coming to LeBonheur tomorrow at 3pm to do a full photoshoot for us, just like we were at Sears or JCPenney. MJ has a lot of cute outfits to wear and I cannot wait. We are praying that she will be awake and in a good mood and smiling. I want to thank Gayle, my friend who's dad is doing this, for making this happen. Words cannot express my gratitude. I only hope I can be a blessing like so many have been to us.
Well, I came home tonight to get our clothes together and iron MJs outfits. I need to get going on that so that I can get back to LeBonheur before 1am. Thanks for the prayers and keep them coming!
Our life in a few paragraphs Current mood: contemplative
Macy Jane continues to do well. She is such a happy baby (most of the time when the nurses aren't bugging her) and smiling more and more. Continues to be off of the oxygen for a week now, praise the Lord!
Reality hit hard today. Dr. Cabrera came in to see MJ and said that Dr. Joshi was calling a cardiologist at Stanford about transferring MJ out there, soon. Apparently Dr. Joshi was on the phone with the nurse today and getting lots of information and she said that Dr. Joshi should be coming by soon to tell us when we are headed to CA. Reality hit that D-day is really close and fast approaching. I had a weak moment of faith and started worrying about all of the what ifs and called my sister bawling. She talked to me and comforted me with scripture from the Bible and that really helped me. I Just cannot imagine life without my precious baby girl, my gift from God. For those of you that have been blessed with healthy children, hug them tight and thank God that you are blessed with a "normal" life and do not have to do through all of this. I am not saying woe is me or anything like that. I would not trade my life or my daughter for a perfectly healthy child. She is my miracle baby and God is teaching me a lot through this whole situation. Sometimes I get a twinge of jealousy when I hear of people having healthy babies and enjoying them at home, but God has been with us every day for the past 12 weeks, with 10 of those being at Lebonheur.
I do not think that Steve is going to be able to travel in CA. It just isn't working out and the more I think about it, the more I realize that I need him at Stanford with me and MJ. God has been providing for us financially to where we are set for the first month we are out there as far as expenses back home. Today, a nurse that Steve works with handed Steve a check for $!,000!! Unbelievable. God is so good.
In other news! God has provided a photographer for us. Mr. Perry (father of a friend from high school) is coming to LeBonheur tomorrow at 3pm to do a full photoshoot for us, just like we were at Sears or JCPenney. MJ has a lot of cute outfits to wear and I cannot wait. We are praying that she will be awake and in a good mood and smiling. I want to thank Gayle, my friend who's dad is doing this, for making this happen. Words cannot express my gratitude. I only hope I can be a blessing like so many have been to us.
Well, I came home tonight to get our clothes together and iron MJs outfits. I need to get going on that so that I can get back to LeBonheur before 1am. Thanks for the prayers and keep them coming!
Monday, August 20, 2007
Monday, August 20, 2007
Sunday August 19 Current mood: satisfied
Sorry it has been so long. This is the first time I have been at home all week and I do not fight the thugs at LeBonheur to get on the computer anymore.
I am almost scared to blog because every time I do, something goes wrong it seems. Oh-well, if you are reading this, you care what is going on with my sweet sugar bear and I owe it to you guys to keep you informed
Macy Jane has been doing really, really, really well. She has been completely off of her oxygen since Thursday! This is the first time IN HER LIFE that she has not had a tube in her nose and tape on her face. She is 3 months old! We are simply overjoyed at her progress. She is being fed completely by her g-tube now and gaining weight. She now weighs 10 pounds 2 ounces. She was up to 10 pounds in the ICU, but A LOT of that was fluid. Her eyes were almost swollen shut.
She is losing her "baby hair". In a way it is good because I was wondering what I was going to do about her hair to even it up when she is a few months older, since one side was shaved and the other not. However, the other side is thinning out and they are about even. Funny thing is that she has all of the hair on the top of her head and at the back.......one of the nurses that loves MJ has called her "Macy Mohawk" for several weeks now and it is true.....from the side she looks like a rooster She is still as cute as ever. Smiles ALL of the time. She has finally started to smile for the doctors and nurses and they just melt when she does it.
I must say that the staff on 7-west is absolutely wonderful. (most of them ) Not only did they let us keep our room when MJ was in the ICU for a week, but they call us their family and MJ is the "floor baby". One of the nurses that has her every weekend during the day came back from Florida and she walked in to the room Saturday morning and gave me a really cute outfit for Macy Jane that says "Always a Princess". She said she saw it and thought of MJ immediately. That showed me that we were not just a room number, but that people do actually care!
So....what is the plan? Well, insurance has approved the $27,000 flight to SanFrancisco (that is only airport to airport........OUTRAGEOUS!) and they have approved the surgery and will cover it, PRAISE THE LORD! Hehe....until she reaches her lifetime maximum. We are just waiting on Dr. Hanley to give the okay for her to go to California. I am being patient becuase MJ is doing so well and I am enjoying spending time with her and *gasp* I even get to hold her now!!! Seems like we are always waiting on California, but in God's time is what I keep telling myself. We will go there when the time is perfect.
I am trying to think if I am leaving anything out. I don't think so.....I have a lot of new pictures that I will post sometime this week for everyone to see. I forgot the camera at the hospital tonight......oops.
Prayer requests: MJ to continue to do well and gain weight, her g-tube site is really inflammed right now (dressing wasn't changed for 4 days in the ICU.....and its supposed to be changed EVERY DAY.......that's a story for another blog) but is looking better, for Dr. Hanley (that he won't die or have a serious accident crushing his hands which would make him unable to do her surgery....hehe), for strength to keep going day to day. We have officially been at LeBonheur for 2 months straight now. ICK! I also have some unspokens as well.
I appreciate everyone your prayers! PLEASE keep them coming. Much love to you all!
p.s. OH YEAH! Please pray that I will start producing more milk again. There was a fiasco where my breast milk was either thrown away or stolen or a nurse just lied to me and told me I had plenty. I usually pump once a day or every other day just to keep it going and well......it is taking a while to get it going again. MJ is being fed a special formula right now until my milk supply increases....I am so sad about this because breast milk really is the best thing for her and I feel like I am depriving her of things that you just can't get out of formula. It will come back though, I talked with the lactation consultant at LeBonheur and started taking Fenugreek (an herb that tastes like maple syrup!) and I am pumping like crazy. Ah.....the joys of motherhood haha.
Sunday August 19 Current mood: satisfied
Sorry it has been so long. This is the first time I have been at home all week and I do not fight the thugs at LeBonheur to get on the computer anymore.
I am almost scared to blog because every time I do, something goes wrong it seems. Oh-well, if you are reading this, you care what is going on with my sweet sugar bear and I owe it to you guys to keep you informed
Macy Jane has been doing really, really, really well. She has been completely off of her oxygen since Thursday! This is the first time IN HER LIFE that she has not had a tube in her nose and tape on her face. She is 3 months old! We are simply overjoyed at her progress. She is being fed completely by her g-tube now and gaining weight. She now weighs 10 pounds 2 ounces. She was up to 10 pounds in the ICU, but A LOT of that was fluid. Her eyes were almost swollen shut.
She is losing her "baby hair". In a way it is good because I was wondering what I was going to do about her hair to even it up when she is a few months older, since one side was shaved and the other not. However, the other side is thinning out and they are about even. Funny thing is that she has all of the hair on the top of her head and at the back.......one of the nurses that loves MJ has called her "Macy Mohawk" for several weeks now and it is true.....from the side she looks like a rooster She is still as cute as ever. Smiles ALL of the time. She has finally started to smile for the doctors and nurses and they just melt when she does it.
I must say that the staff on 7-west is absolutely wonderful. (most of them ) Not only did they let us keep our room when MJ was in the ICU for a week, but they call us their family and MJ is the "floor baby". One of the nurses that has her every weekend during the day came back from Florida and she walked in to the room Saturday morning and gave me a really cute outfit for Macy Jane that says "Always a Princess". She said she saw it and thought of MJ immediately. That showed me that we were not just a room number, but that people do actually care!
So....what is the plan? Well, insurance has approved the $27,000 flight to SanFrancisco (that is only airport to airport........OUTRAGEOUS!) and they have approved the surgery and will cover it, PRAISE THE LORD! Hehe....until she reaches her lifetime maximum. We are just waiting on Dr. Hanley to give the okay for her to go to California. I am being patient becuase MJ is doing so well and I am enjoying spending time with her and *gasp* I even get to hold her now!!! Seems like we are always waiting on California, but in God's time is what I keep telling myself. We will go there when the time is perfect.
I am trying to think if I am leaving anything out. I don't think so.....I have a lot of new pictures that I will post sometime this week for everyone to see. I forgot the camera at the hospital tonight......oops.
Prayer requests: MJ to continue to do well and gain weight, her g-tube site is really inflammed right now (dressing wasn't changed for 4 days in the ICU.....and its supposed to be changed EVERY DAY.......that's a story for another blog) but is looking better, for Dr. Hanley (that he won't die or have a serious accident crushing his hands which would make him unable to do her surgery....hehe), for strength to keep going day to day. We have officially been at LeBonheur for 2 months straight now. ICK! I also have some unspokens as well.
I appreciate everyone your prayers! PLEASE keep them coming. Much love to you all!
p.s. OH YEAH! Please pray that I will start producing more milk again. There was a fiasco where my breast milk was either thrown away or stolen or a nurse just lied to me and told me I had plenty. I usually pump once a day or every other day just to keep it going and well......it is taking a while to get it going again. MJ is being fed a special formula right now until my milk supply increases....I am so sad about this because breast milk really is the best thing for her and I feel like I am depriving her of things that you just can't get out of formula. It will come back though, I talked with the lactation consultant at LeBonheur and started taking Fenugreek (an herb that tastes like maple syrup!) and I am pumping like crazy. Ah.....the joys of motherhood haha.
Wednesday, August 8, 2007
Wednesday, August 08, 2007
Wednesday Current mood: cranky
The past two days have been very hard on me. Last evening, a little baby that was in a bed close to Macy Jane's passed away. This child had been on ecmo and looked sick....so sick they operated on him several times at the bedside in the unit. It broke my heart to see his parents and his family upset, and I couldn't help but wonder if that was going to be me and Steve at some point. I could not wait to get back to MJ and just kiss her and thank God that we have had another day with her in our lives. I know I shouldn't think like that, but seeing someone hurt like that after losing their baby freaked me out. It happened again today when one of the babies in the front of the ICU that was on ecmo passed away as well. The mom looked REALLY young and again I just cried for her and her family. At the same time I was begging God to please spare my Macy Jane. Not that we are any more special than anyone else, but it is all I can do. I had to leave the hospital tonight because my nerves are shot and I just need a break.
MJ is doing okay. Still on the ventilator. They weaned her today and were going to extubate her, but her co2 was up on her blood gas. MJ lives with a CO2 in the 50s and it was in the 50s on the gas, but the fellow on for the night did not feel comfortable extubating her. I got mad about it but after I bit my tongue from saying anything, I realized that this is still in God's plans and in His time, she will be breathing on her own. I walked in this morning and she had HER clothes on and was laying on one of HER blankets. That means so much to me when people take the time to dress her and put her little animals and blankets around her. It makes her look more "normal" in the midst of all of this.
My friends from work came to see us on Monday. We made the posters to put up at work and they all looked WONDERFUL (yes Jeri....even yours did hahaha ) I can't thank them enough for helping me and Steve and MJ out during this time.
Well, I need to get going and mail my sister the addresses that I have received so far. If I do not do this, you will see an obituary with my name on it by the weekend.
Thanks for the prayers, keep them coming! And, as always......anyone is more than welcome to come and visit. You would be amazed at what even 10 minutes of a visitor can do for your mood and spirits. Everyone is busy with their lives and kids and I understand that but if you are bored and want to risk getting murdered in the ghetto.....come on down!!
Wednesday Current mood: cranky
The past two days have been very hard on me. Last evening, a little baby that was in a bed close to Macy Jane's passed away. This child had been on ecmo and looked sick....so sick they operated on him several times at the bedside in the unit. It broke my heart to see his parents and his family upset, and I couldn't help but wonder if that was going to be me and Steve at some point. I could not wait to get back to MJ and just kiss her and thank God that we have had another day with her in our lives. I know I shouldn't think like that, but seeing someone hurt like that after losing their baby freaked me out. It happened again today when one of the babies in the front of the ICU that was on ecmo passed away as well. The mom looked REALLY young and again I just cried for her and her family. At the same time I was begging God to please spare my Macy Jane. Not that we are any more special than anyone else, but it is all I can do. I had to leave the hospital tonight because my nerves are shot and I just need a break.
MJ is doing okay. Still on the ventilator. They weaned her today and were going to extubate her, but her co2 was up on her blood gas. MJ lives with a CO2 in the 50s and it was in the 50s on the gas, but the fellow on for the night did not feel comfortable extubating her. I got mad about it but after I bit my tongue from saying anything, I realized that this is still in God's plans and in His time, she will be breathing on her own. I walked in this morning and she had HER clothes on and was laying on one of HER blankets. That means so much to me when people take the time to dress her and put her little animals and blankets around her. It makes her look more "normal" in the midst of all of this.
My friends from work came to see us on Monday. We made the posters to put up at work and they all looked WONDERFUL (yes Jeri....even yours did hahaha ) I can't thank them enough for helping me and Steve and MJ out during this time.
Well, I need to get going and mail my sister the addresses that I have received so far. If I do not do this, you will see an obituary with my name on it by the weekend.
Thanks for the prayers, keep them coming! And, as always......anyone is more than welcome to come and visit. You would be amazed at what even 10 minutes of a visitor can do for your mood and spirits. Everyone is busy with their lives and kids and I understand that but if you are bored and want to risk getting murdered in the ghetto.....come on down!!
Thursday, August 2, 2007
Thursday, August 02, 2007
Thursday Current mood: scared
Today was a good day that turned bad. It started off great. A great friend of mine, Micah, asked me to go to lunch with her and then to get our nails and feet done. That was soo nice. Someone had given me some gift cards to TGI Friday and some money to get my nail/feet done, so I didn't feel guilty about doing it.
I was heading back to the hospital stuck in traffic when Steve text messaged me that Macy Jane wasn't doing good, her oxygen levels were in the 30s! I was stuck on the interstate but finally started moving.....I put my flashers on and did 100 all the way to LeBoneheur. I didn't care if a cop started following me, I WAS NOT pulling over. Thankfully, noone stopped me. I got there and Steve was in the hallway. They had intubated MJ again, and put her on the breathing machine and sedated/paralyzed her. I was so upset, I just cried and cried. I calmed down though and went in her room and touched her and kissed her and told her that I loved her. She is in the ICU and is doing GREAT now. Her color is better than it has been in days. Nice & Pink. They aren't sure what happened, but thinkit was a combination of her being in pain from gas (which they would not give her Mylicon because they didnt want to mask the symptoms which pissed me off) and clamping down her circulation and becoming acidotic. Dr. Cabrera (my fav ICU doc) was very chipper and optimistic and said that she will be off the ventilator by the end of the weekend and that he thinks she may have never fully recovered from being on the ventilator for her stomach surgery. They sent her to the floor with CO2 levels still a tad bit high.
I went through my usual feelings and emotions, but maybe God is doing this to tell us that it is time to go to California sooner. Right now (before all of this happened) it looked as if we were going to go in as little as 2 weeks. Who knows what will happen now. God is opening some doors for Steve to get a job out there, so just keep praying.
This is one roller coaster ride that I can't wait to be over, in God's timing. She was doing so well, but it all goes back to the fact that her little heart needs some major repairing. I came home tonight because me and Steve were originally going to be home tonight and I didn't pack my clothes or shoes appropriately. He is still at the hospital, they are allowing us to keep our stuff in her old room so he will have a place to sleep.
Please pray for my little baby. I know everyone is, I just have to keep asking because that is the only thing that helps. Also, remember Steve and our families as well. This has all been so hard emotionally, physically, and financially. Just when I think I can't take more, God puts more on me, but I guess it is to make me stronger. Just keep praying and I will update as I can.
Love
Bethany
Thursday Current mood: scared
Today was a good day that turned bad. It started off great. A great friend of mine, Micah, asked me to go to lunch with her and then to get our nails and feet done. That was soo nice. Someone had given me some gift cards to TGI Friday and some money to get my nail/feet done, so I didn't feel guilty about doing it.
I was heading back to the hospital stuck in traffic when Steve text messaged me that Macy Jane wasn't doing good, her oxygen levels were in the 30s! I was stuck on the interstate but finally started moving.....I put my flashers on and did 100 all the way to LeBoneheur. I didn't care if a cop started following me, I WAS NOT pulling over. Thankfully, noone stopped me. I got there and Steve was in the hallway. They had intubated MJ again, and put her on the breathing machine and sedated/paralyzed her. I was so upset, I just cried and cried. I calmed down though and went in her room and touched her and kissed her and told her that I loved her. She is in the ICU and is doing GREAT now. Her color is better than it has been in days. Nice & Pink. They aren't sure what happened, but thinkit was a combination of her being in pain from gas (which they would not give her Mylicon because they didnt want to mask the symptoms which pissed me off) and clamping down her circulation and becoming acidotic. Dr. Cabrera (my fav ICU doc) was very chipper and optimistic and said that she will be off the ventilator by the end of the weekend and that he thinks she may have never fully recovered from being on the ventilator for her stomach surgery. They sent her to the floor with CO2 levels still a tad bit high.
I went through my usual feelings and emotions, but maybe God is doing this to tell us that it is time to go to California sooner. Right now (before all of this happened) it looked as if we were going to go in as little as 2 weeks. Who knows what will happen now. God is opening some doors for Steve to get a job out there, so just keep praying.
This is one roller coaster ride that I can't wait to be over, in God's timing. She was doing so well, but it all goes back to the fact that her little heart needs some major repairing. I came home tonight because me and Steve were originally going to be home tonight and I didn't pack my clothes or shoes appropriately. He is still at the hospital, they are allowing us to keep our stuff in her old room so he will have a place to sleep.
Please pray for my little baby. I know everyone is, I just have to keep asking because that is the only thing that helps. Also, remember Steve and our families as well. This has all been so hard emotionally, physically, and financially. Just when I think I can't take more, God puts more on me, but I guess it is to make me stronger. Just keep praying and I will update as I can.
Love
Bethany
Wednesday, August 1, 2007
Wednesday, August 01, 2007
Wednesday Current mood: ecstatic
I am happy to report that Macy Jane is doing well! I spent the night at home last night with Steven, while my mom is staying with MJ so she is text messaging me updates.
Her tube feedings are up to 17cc/hr and she is tolerating them well! They have decreased the rate on her TPN (IV nutrition). Her cardiologist came in earlier (not Joshi, the one rounding for him) and told my mom that she looks great and that they were going to turn down her TPN even more and start weaning off her oxygen. I am absolutely ecstatic. GOD IS SO GOOD!!!! It is so amazing that He continues to show His hand on Macy Jane's life. I just know that He is going to bring her through everything, I have faith that He will.
In other good news.....her immune system. It is NORMAL!!! We got the official word this morning. She is going to be able to receive all of her immunizations as scheduled, praise the Lord! A non-functioning or low immune system is VERY common with DiGeorge Syndrome, but God has blessed MJ with a normal system. That is very important because of her HUGE risk for infection with all of the different surgeries, IVs etc. I could just sit here and cry tears of joy because finally things are going great with my little Macy Jane.
If she continues to do well and gain weight, she will go to California in late September. However, if she doesn't gain a lot of weight and isn't "thriving" they will do it at the end of August/beginning of September. Steve mailed his application to California Board of Nursing this morning, so hopefully he will have that license in time to work while we are out there so that we can pay our bills back home. (house, car, etc.) Please pray that they will process his application fast and that he will find the right job out there, or the right company to travel with.
Well, that is the update for now. I am so happy to report that things are going really well. Once MJ got on a regular schedule of pooping and not being constipated, she is much better. I hope that everyone is doing well, please continue to pray as we are not out of the woods just yet, but I can see some daylight again!!!!
Wednesday Current mood: ecstatic
I am happy to report that Macy Jane is doing well! I spent the night at home last night with Steven, while my mom is staying with MJ so she is text messaging me updates.
Her tube feedings are up to 17cc/hr and she is tolerating them well! They have decreased the rate on her TPN (IV nutrition). Her cardiologist came in earlier (not Joshi, the one rounding for him) and told my mom that she looks great and that they were going to turn down her TPN even more and start weaning off her oxygen. I am absolutely ecstatic. GOD IS SO GOOD!!!! It is so amazing that He continues to show His hand on Macy Jane's life. I just know that He is going to bring her through everything, I have faith that He will.
In other good news.....her immune system. It is NORMAL!!! We got the official word this morning. She is going to be able to receive all of her immunizations as scheduled, praise the Lord! A non-functioning or low immune system is VERY common with DiGeorge Syndrome, but God has blessed MJ with a normal system. That is very important because of her HUGE risk for infection with all of the different surgeries, IVs etc. I could just sit here and cry tears of joy because finally things are going great with my little Macy Jane.
If she continues to do well and gain weight, she will go to California in late September. However, if she doesn't gain a lot of weight and isn't "thriving" they will do it at the end of August/beginning of September. Steve mailed his application to California Board of Nursing this morning, so hopefully he will have that license in time to work while we are out there so that we can pay our bills back home. (house, car, etc.) Please pray that they will process his application fast and that he will find the right job out there, or the right company to travel with.
Well, that is the update for now. I am so happy to report that things are going really well. Once MJ got on a regular schedule of pooping and not being constipated, she is much better. I hope that everyone is doing well, please continue to pray as we are not out of the woods just yet, but I can see some daylight again!!!!
Wednesday, August 01, 2007
Fund for MJs bills Current mood: chipper
My sister just called me with some excellent news! My Uncle Tommy spoke with one of his friends at Jackson General Hospital in Jackson, Tennessee and they are going to set up a fund for Macy Jane. The details are sketchy at this point but what we know so far is this:
My sister will be the administrator on the account and will give them permission to release money from the account for the bills, airfair, lodging etc. The fund is tax free for us so Uncle Sam won't get half of the money, huge blessing. Also, anyone that donates will be able to do it and have a tax write off for it. Dee said that she thought that people would be able to go online and donate if they wanted to. We should have more information tomorrow when my Uncle T goes to set up the fund and get all of the information.
For those of you at work, Micah had mentioned doing a bulletin board with MJs pictures and a summary of what is going on with MJ and what exaclty the future plan is. Also, there will be instructions on it as to how people can donate. I hope to be able to have all of that info ready for Micah next week sometime. I know that everyone has graciously been wanting to give us money or do SOMETHING to help and I have been saying no, but just be patient, you'll have the opportunity soon.
Thanks to everyone that has shown interest. If any of you would like to put little buckets out at your workplace for people to donate (if they will let you) just let me know and I will get a picture of MJ for you and type up a little information thing about her so that people know where the money is going. That is just an idea that my uncle gave to us.
I am so happy right now that everything seems to be working out. Keep praying!!!
Fund for MJs bills Current mood: chipper
My sister just called me with some excellent news! My Uncle Tommy spoke with one of his friends at Jackson General Hospital in Jackson, Tennessee and they are going to set up a fund for Macy Jane. The details are sketchy at this point but what we know so far is this:
My sister will be the administrator on the account and will give them permission to release money from the account for the bills, airfair, lodging etc. The fund is tax free for us so Uncle Sam won't get half of the money, huge blessing. Also, anyone that donates will be able to do it and have a tax write off for it. Dee said that she thought that people would be able to go online and donate if they wanted to. We should have more information tomorrow when my Uncle T goes to set up the fund and get all of the information.
For those of you at work, Micah had mentioned doing a bulletin board with MJs pictures and a summary of what is going on with MJ and what exaclty the future plan is. Also, there will be instructions on it as to how people can donate. I hope to be able to have all of that info ready for Micah next week sometime. I know that everyone has graciously been wanting to give us money or do SOMETHING to help and I have been saying no, but just be patient, you'll have the opportunity soon.
Thanks to everyone that has shown interest. If any of you would like to put little buckets out at your workplace for people to donate (if they will let you) just let me know and I will get a picture of MJ for you and type up a little information thing about her so that people know where the money is going. That is just an idea that my uncle gave to us.
I am so happy right now that everything seems to be working out. Keep praying!!!
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