Saturday, February 26, 2011
February 26, 2011
We got the results back from Grayson's 60 day bone marrow test and it showed 100% donor (Gavin) marrow! So much praise and joy!!!! We have 4 more of these tests to go but we are thrilled with the fact that Grayson is still in remission and that Gavin's cells seem to be doing there job!
Wednesday, February 23, 2011
February 23, 2011
I am really counting down the days until we can come home. We are at day 63 post transplant today with no GVHD flares, no infections, no re-hospitalizations, no major problems to speak of which is AWESOME! Actually it's really quite amazing that Grayson is doing so well. The doctors stopped his blood pressure medication today which is one less medication to give. We are down to just 5 meds per day! So cool! They also told us he is doing well enough to stop coming to clinic 3x a week. Now we only have to go on Monday's and Friday's. This means light therapy will only be twice a week as well. This is great news because our clinic/light therapy days are very draining because we are up and down in parking garages and on two different floors for light therapy and oncology and I choose to carry my very large baby instead of using a stroller because I hate waiting for the elevator in the parking garage in the freezing cold weather. The stairs are always faster. Anyway its just great that he is healthy enough to start cutting back on his visits and it just makes me feel one step closer to home.
I miss home. I wonder if Grayson will even recognize our home when we get back. He certainly recognized his brothers but I wonder if the actual house will be familiar. Looking back at videos of him before we left made me realize how little he was when this all started and how much he's grown during this time. He is so big compared to what he was. He is just a much more mature baby now and I wonder when he goes home if it will just be one more new place we are moving to. Not a big deal, he will get used to it and will be thrilled to see all of his family in one place regardless of the physical location. Tom used to tell me when he got home from business trips that "home" wasn't about the place, it was about the people. The kids and I were "home" to him not the house. That is so true. My home comes to visit on weekends now and when they do I no longer care about going to my house, I just want the people, no matter where we are.
Grayson's bone marrow test results should be back by Friday night. At least that's what I was told today. I am not sure if this will really happen, but I am hopeful we will know something by the end of the week. I am hoping to at least know whether any of his white cells look abnormal even if we don't have the breakdown of Gavin v. Grayson percentages. We continue to pray for 100% engraftment and continue to give thanks to all the amazing people in our lives and the wonderful blessings God give us each day.
I miss home. I wonder if Grayson will even recognize our home when we get back. He certainly recognized his brothers but I wonder if the actual house will be familiar. Looking back at videos of him before we left made me realize how little he was when this all started and how much he's grown during this time. He is so big compared to what he was. He is just a much more mature baby now and I wonder when he goes home if it will just be one more new place we are moving to. Not a big deal, he will get used to it and will be thrilled to see all of his family in one place regardless of the physical location. Tom used to tell me when he got home from business trips that "home" wasn't about the place, it was about the people. The kids and I were "home" to him not the house. That is so true. My home comes to visit on weekends now and when they do I no longer care about going to my house, I just want the people, no matter where we are.
Grayson's bone marrow test results should be back by Friday night. At least that's what I was told today. I am not sure if this will really happen, but I am hopeful we will know something by the end of the week. I am hoping to at least know whether any of his white cells look abnormal even if we don't have the breakdown of Gavin v. Grayson percentages. We continue to pray for 100% engraftment and continue to give thanks to all the amazing people in our lives and the wonderful blessings God give us each day.
Sunday, February 20, 2011
Second Bone Marrow Aspirate
Friday was a bright but windy day at Fort McHenry!
Gavin's face is so priceless
He was smiling for the picture under the mask ;)
Tuesday, February 15, 2011
February 15, 2011
I am losing track of which days are which and what meds Grayson gets on which days because they are changing so fast. It seems like every clinic visit a med gets dropped, added, or changed. It is becoming increasingly difficult to keep organized. Grayson's liver numbers have been worrisome because they just won't normalize. They normalized for a little while (long enough for us to be discharged) but then his enzymes skyrocketed. His bilirubin is staying in normal range but the enzymes and ggt are very high. They believe it is do to one of the medications he is on called fluconozole. It's an antifungal that they give to prevent any fungal infections. Sometimes it can have this effect. However, we stopped that and changed it to an IV med called Ambizone (the one I didn't want him to have when we were hospitalized) over a week ago and there hasn't been much difference. The Ambizone is given 3x a week by IV over a two hour period which is not bad considering he only has to be attached to the pole for 6 hours out of the whole week. The dose is low enough that it shouldn't be too hard on his kidneys. If they notice any problems we will have to restart the IV fluids overnight. We will see. I am hopinh he handles it fine and that the fluconozole was the culprit.
To be on the safe side they also tested him for Hepatitis and a slew of other bacterial and viral infections which can infect the liver without showing other symptoms. We will see what the tests show on Wednesday. He also had his cortisol level drawn on Monday which showed that he was NOT making his own steroids yet. This was dissapointing but not uncommon. We will have to wean slowly and hope his adrenal glands kick into action. He is supposed to start losing the "moon face" now that the steroid dose is low, but I haven't noticed a change yet. I have noticed a change in his appetite. He is much less interested in food but is thankfully still nursing. He actually nurses all day and all night it seems. He sleeps with me all night, well more like on top of me all night because he nurses every hour or so. He is NOT taking much other liquid by mouth so the nursing is important but I am waking up exhausted and sore from the uncomfortable night sleep with a 27 pound kid on my chest. I know I am whining and as I write this I am truly thankful that I can even complain about this because if he hadn't restarted the nursing he would be connected to a pole 24/7 getting tube feeds, IV fluids and IV nutrition.
Hmm, what else. Grayson is not walking yet :( He is 12 months old and my other kiddo was walking by 10 months. He isn't even crawling. He cruises some but I was concerned about the developmental delays they told me chemo causes. The doctors said he looks good and isn't as delayed as they would expect after lying in a hospital for two months. However, because I was pushing the issue they referred me to Kennedy Kreiger who took my information and talked to their MD's. These doctors felt it important for Grayson to be seen and for him to get some PT just to be sure there were no further delays in gross motor skills (all other skills are great). So they put me down for the first available appointment....MAY 3rd! REALLY, YOU THINK I"M GOING TO WAIT THAT LONG!?! First of all I am not waiting that long to find out whether or not there is a problem and then to have to get appointments for PT after that date could take even longer. I started calling everyone I knew to see if there was a way to get him seen sooner or get PT sooner. Enter Holley Hovermale (halo round her head). A gal from my church who happens to be a Pediatric Physical Therapist who was willing to drive down and see my baby boy in 2 days! Man did God lead us to a good church! It is just full of people blessing us! UBC family know that we cannot wait to return the blessings! Grayson took to Holley right away and Holley gave me some exercises to work on with him. I took all the information she gave me back to my doctors and they were very impressed and baffled that I found a Ped. PT to see him in two days. Yup, God's cool like that! Please pray that these exercises go well for Grayson because he is already resisting when I try them and I am a total softy when it comes to his tears. He cries and I give in and pick him up. The child has been through so much I don't want to see him cry...ever! I am sure I am spoiling him and will probably have my hands full when he's three, but I will just be happy at that point that he made it to three.
Speaking of making it to three...
This is now going to take a turn for sad and depressing so stop reading if you don't want a sad and depressing dose of reality.
A friend who had a daughter go through a BMT two years ago for a different condition holds regular fundraising events for a foundation called St. Baldrick's. They raise money for childhood cancer research for some of the doctors that treated Grayson at Hopkins. This organization has team's of people who voluntarily shave their heads (both men and women) to raise money for cancer research. They are holding an event at Martin's East in March and Grayson is one of the children they are honoring at their event. They pick children that have had childhood cancers and share their stories during the event to raise awareness for childhood cancer. I went onto the event site to make Grayson a page and was totally sidetracked with all the other children's stories. Read some if you like. Have tissues nearby: www.stbaldricks.org
I should preface this with the fact that I have done ZERO internet research about JMML and childhood cancer because you can find all sorts of scary stuff on the internet and it seemed counterproductive at the time to read all the worst-case scenarios. There are so many children effected by childhood cancer and 1 in 5 diagnosed don't live. Of course that number varies depending on the kind of cancer you have. Of course once I started reading, I couldn't stop. It was like one story after another grabbed me. It sort of awakened this desire to connect with other parents who have gone through this even if it was only reading their story. I wanted to know about the other children who had JMML. In hindsight I should've waited until we were through our treatment and Grayson was out of the "danger zone" before I read them. There are so many children lost to this disease and for various reasons. We know that a BMT is the only treatment/cure. It does not respond to straight chemo or radiation. We also know that only 50% of those transplants are successful at curing JMML. Those aren't the best odds, but Tom and I really aren't interested in the odds because we are not interested in limiting what God can do. Reading those stories was sad and depressing but also made me so thankful for our current situation. Our son was diagnosed quickly where other children had been sick with this disease for a year before they got to a doctor that could figure out what's going on. It makes me sick to think they might have lived had the doctor diagnosed them sooner. We would like to think that doctors are the end-all-be-all when it comes to medicine but they don't know everything. Many cancers go undiagnosed because the doctors for whatever reason don't run the right series of tests.
Then of course there is the whole process of finding an appropriate donor match. Having a 100% sibling match is not that common and I read stories of children who had no donor matches at all (even internationally). The fact that Gavin was 100% match is nothing less than a miracle. Then you have to go through transplant which is where most children have complications. It is just awful to read but I have to believe that God's hand is on my baby and on my family. Right now I am thankful for all of the things that have gone right and that he is a smily, happy baby right now. Grayson is by no means free and clear; we still have two years before we can say "yes, it worked". There are plenty of kids who relapse 13 months - 2 years out from tranplant, but I just have to continue believing that God is in control. He has given us strength and grace to get through this much and I have to believe that if Grayson's death could do more for Christ than his life, that He would give us the strength and grace to get through that as well.
Grayson will have his second bone marrow aspirate next week. Not sure what day yet, but I will keep you all posted on the exact day and time. He will have to go under anesthesia again. Please pray for a continued 100% engraftment.
People continue to bless us through this and I just want to thank my mother for her continued sacrifice as she stays at my house and fills my shoes as mom to Mason and Gavin. I love you Mom!
Here is a video of Grayson having a web conference with my in-laws. Very cute. My husband said to only post the short one but I may post a second one that is longer with Gavin and Grayson.
Short Video Clip: http://www.youtube.com/watch?v=IIhaczWjx_A
To be on the safe side they also tested him for Hepatitis and a slew of other bacterial and viral infections which can infect the liver without showing other symptoms. We will see what the tests show on Wednesday. He also had his cortisol level drawn on Monday which showed that he was NOT making his own steroids yet. This was dissapointing but not uncommon. We will have to wean slowly and hope his adrenal glands kick into action. He is supposed to start losing the "moon face" now that the steroid dose is low, but I haven't noticed a change yet. I have noticed a change in his appetite. He is much less interested in food but is thankfully still nursing. He actually nurses all day and all night it seems. He sleeps with me all night, well more like on top of me all night because he nurses every hour or so. He is NOT taking much other liquid by mouth so the nursing is important but I am waking up exhausted and sore from the uncomfortable night sleep with a 27 pound kid on my chest. I know I am whining and as I write this I am truly thankful that I can even complain about this because if he hadn't restarted the nursing he would be connected to a pole 24/7 getting tube feeds, IV fluids and IV nutrition.
Hmm, what else. Grayson is not walking yet :( He is 12 months old and my other kiddo was walking by 10 months. He isn't even crawling. He cruises some but I was concerned about the developmental delays they told me chemo causes. The doctors said he looks good and isn't as delayed as they would expect after lying in a hospital for two months. However, because I was pushing the issue they referred me to Kennedy Kreiger who took my information and talked to their MD's. These doctors felt it important for Grayson to be seen and for him to get some PT just to be sure there were no further delays in gross motor skills (all other skills are great). So they put me down for the first available appointment....MAY 3rd! REALLY, YOU THINK I"M GOING TO WAIT THAT LONG!?! First of all I am not waiting that long to find out whether or not there is a problem and then to have to get appointments for PT after that date could take even longer. I started calling everyone I knew to see if there was a way to get him seen sooner or get PT sooner. Enter Holley Hovermale (halo round her head). A gal from my church who happens to be a Pediatric Physical Therapist who was willing to drive down and see my baby boy in 2 days! Man did God lead us to a good church! It is just full of people blessing us! UBC family know that we cannot wait to return the blessings! Grayson took to Holley right away and Holley gave me some exercises to work on with him. I took all the information she gave me back to my doctors and they were very impressed and baffled that I found a Ped. PT to see him in two days. Yup, God's cool like that! Please pray that these exercises go well for Grayson because he is already resisting when I try them and I am a total softy when it comes to his tears. He cries and I give in and pick him up. The child has been through so much I don't want to see him cry...ever! I am sure I am spoiling him and will probably have my hands full when he's three, but I will just be happy at that point that he made it to three.
Speaking of making it to three...
This is now going to take a turn for sad and depressing so stop reading if you don't want a sad and depressing dose of reality.
A friend who had a daughter go through a BMT two years ago for a different condition holds regular fundraising events for a foundation called St. Baldrick's. They raise money for childhood cancer research for some of the doctors that treated Grayson at Hopkins. This organization has team's of people who voluntarily shave their heads (both men and women) to raise money for cancer research. They are holding an event at Martin's East in March and Grayson is one of the children they are honoring at their event. They pick children that have had childhood cancers and share their stories during the event to raise awareness for childhood cancer. I went onto the event site to make Grayson a page and was totally sidetracked with all the other children's stories. Read some if you like. Have tissues nearby: www.stbaldricks.org
I should preface this with the fact that I have done ZERO internet research about JMML and childhood cancer because you can find all sorts of scary stuff on the internet and it seemed counterproductive at the time to read all the worst-case scenarios. There are so many children effected by childhood cancer and 1 in 5 diagnosed don't live. Of course that number varies depending on the kind of cancer you have. Of course once I started reading, I couldn't stop. It was like one story after another grabbed me. It sort of awakened this desire to connect with other parents who have gone through this even if it was only reading their story. I wanted to know about the other children who had JMML. In hindsight I should've waited until we were through our treatment and Grayson was out of the "danger zone" before I read them. There are so many children lost to this disease and for various reasons. We know that a BMT is the only treatment/cure. It does not respond to straight chemo or radiation. We also know that only 50% of those transplants are successful at curing JMML. Those aren't the best odds, but Tom and I really aren't interested in the odds because we are not interested in limiting what God can do. Reading those stories was sad and depressing but also made me so thankful for our current situation. Our son was diagnosed quickly where other children had been sick with this disease for a year before they got to a doctor that could figure out what's going on. It makes me sick to think they might have lived had the doctor diagnosed them sooner. We would like to think that doctors are the end-all-be-all when it comes to medicine but they don't know everything. Many cancers go undiagnosed because the doctors for whatever reason don't run the right series of tests.
Then of course there is the whole process of finding an appropriate donor match. Having a 100% sibling match is not that common and I read stories of children who had no donor matches at all (even internationally). The fact that Gavin was 100% match is nothing less than a miracle. Then you have to go through transplant which is where most children have complications. It is just awful to read but I have to believe that God's hand is on my baby and on my family. Right now I am thankful for all of the things that have gone right and that he is a smily, happy baby right now. Grayson is by no means free and clear; we still have two years before we can say "yes, it worked". There are plenty of kids who relapse 13 months - 2 years out from tranplant, but I just have to continue believing that God is in control. He has given us strength and grace to get through this much and I have to believe that if Grayson's death could do more for Christ than his life, that He would give us the strength and grace to get through that as well.
Grayson will have his second bone marrow aspirate next week. Not sure what day yet, but I will keep you all posted on the exact day and time. He will have to go under anesthesia again. Please pray for a continued 100% engraftment.
People continue to bless us through this and I just want to thank my mother for her continued sacrifice as she stays at my house and fills my shoes as mom to Mason and Gavin. I love you Mom!
Here is a video of Grayson having a web conference with my in-laws. Very cute. My husband said to only post the short one but I may post a second one that is longer with Gavin and Grayson.
Short Video Clip: http://www.youtube.com/watch?v=IIhaczWjx_A
February 11, 2011
God just continues to heal my son and bless my family through Grayson's illness. I have so much to update you on because I realized my last real update on Grayson's condition was only a day or two after we left the hospital. It has been ten days since we've been discharged. I actually had to sit here just now and add up the days because it feels like we've been here a month already. The last time I gave an update Grayson was receiving NG feeds 6 times a day, had began nursing again, was on IV fluids for 10 hours a day (overnight) and taking 14 different medications at all different times of the day. In just 10 days Grayson has picked up his eating habits (thank you steroids), pulled out his own NG tube but is nursing/eating well enough to leave it out. He was nursing when he pulled it out and it was so fast neither of us realized what happened at first. He was holding the whole tube and tape in his hands and looked up at me with a sort-of puzzled look which I am sure mirrored mine and then I realized what he was holding and I laughed at him which made him smile. It was a triumphant smile like-"I don't need this thing anymore mom!" I called the doctors but they said as long as he was nursing and eating well and his weight didn't drop significantly that we could leave it out. Well my little chunky monkey has kept his weight right around 12kg (26-27lbs). He did that about 4 days after we were home and it started a chain reaction. Every clinic visit we would hear that we could reduce or drop one of his medications.
Today we went and we are down to only 6 meds per day! Plus the steroids are down to a low enough dose that we should be able to stop them on Monday. We were supposed to be able to stop them today but my husband foiled that plan. Tom came to visit Wednesday and moved my car to a better spot right in front of the building (very sweet of him). He stuck my keys in his pocket and took them home to Westminster (not so sweet of him). Of course it was an accident and I didn't realize until I was walking out the door with baby in arms that my keys were not in my purse. We had to draw a cortisol level by 8:30am in order to make sure his body was making steroids naturally before we completely stopped them. Did you know that our bodies naturally make steroids every morning? After 9am the level drawn would not be as accurate so we had to reschedule that lab for Monday morning. No big deal but it means we continue with steroids over the weekend.
We still made our clinic appointment this morning and the doctors are very, very impressed with Grayson's progress. His skin is looking so much better. He only has a little bit of peeling on his hands and feet and the rest of his skin is pretty much back to it's normal milky whiteness.
I am going to write another post because I started writing this one days ago and was interrupted, but I will finish my thoughts in another more current post.
Today we went and we are down to only 6 meds per day! Plus the steroids are down to a low enough dose that we should be able to stop them on Monday. We were supposed to be able to stop them today but my husband foiled that plan. Tom came to visit Wednesday and moved my car to a better spot right in front of the building (very sweet of him). He stuck my keys in his pocket and took them home to Westminster (not so sweet of him). Of course it was an accident and I didn't realize until I was walking out the door with baby in arms that my keys were not in my purse. We had to draw a cortisol level by 8:30am in order to make sure his body was making steroids naturally before we completely stopped them. Did you know that our bodies naturally make steroids every morning? After 9am the level drawn would not be as accurate so we had to reschedule that lab for Monday morning. No big deal but it means we continue with steroids over the weekend.
We still made our clinic appointment this morning and the doctors are very, very impressed with Grayson's progress. His skin is looking so much better. He only has a little bit of peeling on his hands and feet and the rest of his skin is pretty much back to it's normal milky whiteness.
I am going to write another post because I started writing this one days ago and was interrupted, but I will finish my thoughts in another more current post.
Saturday, February 5, 2011
Family Reunion
Grayson finally got to have his whole family all here at the apartment. Together at last! As soon as he saw Mason and Gavin his eyes were locked on them and he was giggling hysterically. Everything they did or said was so funny to him. He could hardly catch his breath he was laughing so hard at them. This of course made the rest of us hysterical because we haven't heard him laugh like that in a long time. He missed his brothers so much and was thrilled to have them back for a little while (so was I). Here is a video of the three of them. Mason is making him giggle and Gavin is doing his own thing (beating up on Grayson's tortoise).
http://www.youtube.com/watch?v=55KwY5sdHvI
http://www.youtube.com/watch?v=55KwY5sdHvI
Wednesday, February 2, 2011
February 2, 2011
Tom and I have been crying and laughing tonight. Tears of joy of course. Grayson's first chimerism came back to show the breakdown percentage of Gavin's cells versus Grayson's cells found in the first bone marrow aspirate. Praise God because he loves his children so much and is so faithful to us. The results showed 100% donor cells (Gavin's cells). I have chills as I write this. We could not have received any better results. God just continues to exceed our expectations and amaze us with true miracles. We see these miracles everyday in our son's progress and in the outpour of love from the people who have been touched by our story. My heart is just full of love right now. Love for my God, for my family, for my mother and all her sacrifices as she cares for my other son's right now, for all of you praying and sustaining us with your prayers. I just can't express my appreciation because appreciation and thankfulness doesn't cover what I feel. I am just in awe of all of your reading this and in your response to my son's story. I could just go on and on about the countless ways people have reached out to us and I want to eventually write and tell you all about how God is moving people's hearts but I simply don't have the time right now. I will just tell you that he always provides for his children beyond what we could imagine in every way ~ spiritually, emotionally, physically, financially...
February 2, 2011
Ladies and Gentlemen...Grayson Brown has left the building!!!!
Discharged February 1, 2011 at 5pm after 51 days in the hospital!
Praising, Praising, Praising!
Breastfeeding
Taking meds so well by mouth
A cozy clean apartment
Ben and Jerry's Dulce Delish ice cream (I really missed ice cream while I was at the hospital)
Living next to nacho mama's and other great places to eat
Please Pray for:
Safe travel to and from clinic and light therapy appointments on Mondays, Wednesdays, and Fridays
For Grayson to eat enough table food to stop NG tube feeds
Be able to take and keep down the Bactrim on Saturdays and Sundays twice a day.
Discharged February 1, 2011 at 5pm after 51 days in the hospital!
Praising, Praising, Praising!
Grayson signing his discharge papers
(we had a nice view of the JH Dome and city during our stay)
Mommy is so happy and so proud!
We are settling in our little one bedroom apartment in Canton. It is a very sweet and cozy space and is specially designed for post transplant patients. It is only two blocks from Canton Square which has some really great places to eat which is a plus. The kids and Tom can come and stay whenever they want for as long as they want. The only restrictions for visitation is that everyone is perfectly healthy and hasn't recently been around someone who had any signs of sickness (cough, runny nose, sneezing, etc.)
We will be back and forth for our outpatient clinic appointments and light therapy on Mondays, Wednesdays and Fridays. Originally Grayson was supposed to be sent home on TPN (IV nutrition) but he surprised everyone (especially me) when he took up breastfeeding again after 5 weeks of not eating. I thought he was done for sure being that he was 12 months and hadn't eaten anything for 5 weeks. I had been praying that he would start again after transplant ~ not because I enjoy nursing a 27 pound toddler with teeth, but because I knew the antibodies in the milk would help protect his body from infections. His immune system is not just fragile from the transplant but they are also giving him two different immune suppressing drugs to treat his GVHD. The doctors all told me in the beginning not to get my hopes up but that it would be a wonderful thing if he did go back to breastfeeding after transplant. Most of the younger doctors had never seen a breastfed baby go through transplant and that is because most kids that go through transplant are older than Grayson or too sick to breastfeed before transplant. Anyway, I decided I would at least try to keep my milk supply in during the time he wasn't eating. I pumped so much in the beginning that I felt part bovine. I am glad I did though because not only is it helping Grayson's immune system but it also meant we no longer had to be on IV nutrition! Yay! We only have to run a bag of fluids through the night and do 6 NG tube feeds throughout the day. Oh and for those that think its gross or weird to breastfeed your baby when they are a year old...it's not! The American Academy of Pediatrics recommends all babies breastfeed for the first year and longer if possible.
My new full time job as nurse is going okay. I haven't messed up yet but the entire day is spent measuring and giving meds, tube feeds, breastfeeding, journaling ins and outs, offering as much table food as possible, and changing lots of diapers due to the diuretic he is on. Oh and we sleep too which is so much more peaceful and comfortable now that we are out of the hospital. Some meds are once a day, some twice and the others every 6 hours, except for Bactrim which is given twice a day on Saturdays and Sundays only. I have a spreadsheet for the med schedule and a journal where I write down everything that goes in and out. I feel confident that I can do this, but I can't imagine leaving him for even an hour to go anywhere until he is off at least half of these meds. Tom could probably do it if he had some practice but one of us has to work so he doesn't have much time for that. Did I mention how wonderful my husband was? He works so hard and spends the rest of his time running back and forth between our house and the baby and me. I wish I could get it on camera when he walks in the door here. The babies face just lights up with a huge smile and he squeals Da-Da! I am sure my face has a similar expression. He is our hero!
For as much as Grayson is going through he is doing so well. He is eating lots of table food which I hope means we can cut back on the tube feeds and lose the NG tube soon. He is tolerating most of his medications. Now that they are all by mouth he is having a harder time with them because some taste bad and the sheer volume of medications is hard on his stomach. I am thankful he hasn't thrown any back up though. The true test will be this weekend when he has to take the Bactrim. Please pray he keeps it down because it is so important to get that down and keep it down.
Grayson's whopping 14 medications!
There have been so many people that God has sent to us in our time of need. Everyone of you reading this and praying for us are included. I wanted to give a special thanks to Kate and Jason Ring and their girls Caroline and Hailey for all of the wonderful things they have done for us during this time. We love you all!
Caroline and Hailey: Grayson loves his new special lamp with the cars on it and he sends hugs and kisses to you both!
I also want to thank the people from Department of Agriculture who used to work with my mother-in-law for their amazing gift. You have now idea how touched Tom and I were to receive your letter and gift. We don't know any of you but we thank God for your generosity towards our family.
So many things to be thankful for:
My wonderful husbandBreastfeeding
No TPN
Grayson eating so well and tolerating NG tube feedsTaking meds so well by mouth
A cozy clean apartment
Ben and Jerry's Dulce Delish ice cream (I really missed ice cream while I was at the hospital)
Living next to nacho mama's and other great places to eat
Please Pray for:
Safe travel to and from clinic and light therapy appointments on Mondays, Wednesdays, and Fridays
For Grayson to eat enough table food to stop NG tube feeds
Be able to take and keep down the Bactrim on Saturdays and Sundays twice a day.
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