Anyone else out there having problems with blogger? I can't comment anywhere and have been emailed by people saying that they weren't able to post a comment on my blog. Does anyone know what is going on with that?
We have had a crazy few days. After Sam's graduation on friday, I started my four nights in a row at the hospital. I am completely 100% exhausted and can't wait to sleep today. I am so so blessed by such wonderful friends that come and take the kiddos so I can sleep! They actually had a sleep over last night at a friend's house, and they are staying there throughout this morning so I can sleep after work.
I am feeling pretty crummy the last few days but I am not sure if it is related to working so much with so little sleep, or if there is something going on pregnancy wise. I did have my liver tests drawn last week in Boston and they are up a little more than they had been the week before:-( Not sure if it is a significant enough increase to be concerned or not. Praying that it isn't.
PRAYER REQUEST: A co-worker of mine has a daughter named Ashley who was pregnant. Ashley delivered her precious baby girl the other day, at 27wks, the baby is 2lb 4.7oz and has been doing well. Ashley was very sick with pre-eclampsia and HELLP syndrome (like I have been previously) can you please lift up this family in your prayers? Thank you so much!!!
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
Tuesday, June 14, 2011
Saturday, March 19, 2011
Butterflies
We celebrated our little Sophia's third birthday today. It is still so hard to believe that my babies are growing up so fast. We have officially exited the baby stage right now. We had a wonderful day with a butterfly themed birthday party. She was thrilled with so many people coming to celebrate her, and she was tremendously blessed by some wonderful presents.
We had such a great day:-)
We had such a great day:-)
Thursday, March 3, 2011
Sleep study
We had the sleep study last night and all went well. I won't hear any results for two weeks, although if there is something bad we will hear sooner. But Iknow that God has resolved the sleep apnea, and I am not worried about it.
I have been diagnosed with Planta fasciitis, and can I just say it is SO SO painful. I am praying that it heals quickly.
Sophia had a wonderful sleepover with her friend last night and today we are having lots of wild and crazy kiddos over to play. And then tonight I will go to work, I am just praying between my back and my foot that it will be good night.
I have been diagnosed with Planta fasciitis, and can I just say it is SO SO painful. I am praying that it heals quickly.
Sophia had a wonderful sleepover with her friend last night and today we are having lots of wild and crazy kiddos over to play. And then tonight I will go to work, I am just praying between my back and my foot that it will be good night.
Wednesday, February 23, 2011
IVIG, sickness, and friends
Few busy week as usual. IVIG went fabulously well on sunday evening! They got the IV in on the first try, and everything went so smoothly. He did awesome. And we had great nurses.
Monday Soph was sick again:-( Not sure what is going on with this crazy bug. We had had four days since she had vomited and then she started again. I did hear that that is how it happened with my mom too though. I also was vomiting on monday and a wonderful friend stopped with crackers and gingerale. The kids love gingerale.:-)
Yesterday we didn't do a whole lot. Hung out here, did some cleaning. Denise, Dasanee and Danay came over so the big kids all got to play. Matt's parents came over and watched the kiddos last night so we could go to a bible study. Sam was screaming like crazy when we were trying to leave, we had to peel him off me. It breaks my heart when he does that. It has happened maybe three times in his life so when it does it certainly gets my attention. He had a great time and was fine after we left.
Today we are going to a friend's house so the kids can play and then she is watching them when I go to physical therapy.
Again this week I am so blessed to be surrounded by such wonderful supportive people. They make themselves available and are so helpful and kind and compassionate. I am so incredibly blessed.
Monday Soph was sick again:-( Not sure what is going on with this crazy bug. We had had four days since she had vomited and then she started again. I did hear that that is how it happened with my mom too though. I also was vomiting on monday and a wonderful friend stopped with crackers and gingerale. The kids love gingerale.:-)
Yesterday we didn't do a whole lot. Hung out here, did some cleaning. Denise, Dasanee and Danay came over so the big kids all got to play. Matt's parents came over and watched the kiddos last night so we could go to a bible study. Sam was screaming like crazy when we were trying to leave, we had to peel him off me. It breaks my heart when he does that. It has happened maybe three times in his life so when it does it certainly gets my attention. He had a great time and was fine after we left.
Today we are going to a friend's house so the kids can play and then she is watching them when I go to physical therapy.
Again this week I am so blessed to be surrounded by such wonderful supportive people. They make themselves available and are so helpful and kind and compassionate. I am so incredibly blessed.
Wednesday, February 9, 2011
Gardian:-)
Got the most wonderful package today. The company that makes Sam's IVIG product, gives their families all kinds of wonderful stuff. Special books and stuffed animals for the kids, an IVIG journal to bring to each of his treatments for HIM to document how it is going and how he felt after, and he is really excited about that. And then a couple of different medical binders to keep track of all his health stuff. With stickers and dividers, pockets to keep all the doctors cards, calendars to mark each day and what is going on, and then an actual book type project for Sammy to write his story in. So so excited about this. They have a whole on line community for support, and questions. I am just so thankful that we have the opportunity for all of this. IT stinks to have all these medical issues, but what a blessing it is to have such an amazing support team to help us:-)
Sam has complained only twice today of his belly hurting. He ate ok for lunch and didn't complain during lunch. HE did complain at supper, and actually vomited tonight, stating that it felt like something was "clogging his mouth" and that he couldn't swallow. That feeling has since past but I have no clue what this is all about....
We had a great playdate today. God has blessed me so tremendously with some amazing inspiring women, and I am just thrilled to pieces when we get together. Today was one of those days. The kids and I had a wonderful time and I left feeling refreshed and encouraged. Psalm 35:28 My tongue will proclaim your righteousness,
your praises all day long.
Sam has complained only twice today of his belly hurting. He ate ok for lunch and didn't complain during lunch. HE did complain at supper, and actually vomited tonight, stating that it felt like something was "clogging his mouth" and that he couldn't swallow. That feeling has since past but I have no clue what this is all about....
We had a great playdate today. God has blessed me so tremendously with some amazing inspiring women, and I am just thrilled to pieces when we get together. Today was one of those days. The kids and I had a wonderful time and I left feeling refreshed and encouraged. Psalm 35:28 My tongue will proclaim your righteousness,
your praises all day long.
Monday, February 7, 2011
Chuckie Cheese:-)
Sammy had another great day today! I am just so thankful that his stomach is finally feeling better. It is so strange how prevacid wasn't strong enough for him last fall, and we moved on to stronger medications, then this bad belly pain came back and the prevacid works really well:-) Thank you My Great Physician for taking care of Sam.
We also got a surprise invite to Chuckie Cheese today. It was totally last minute but a good friend invited us to join them and so we went. The kids had a wonderful time. They love Tristan, and we were happy to be celebrating his third birthday with him.
Deuteronomy 4:35
You were shown these things so that you might know that the LORD is God; besides him there is no other
We also got a surprise invite to Chuckie Cheese today. It was totally last minute but a good friend invited us to join them and so we went. The kids had a wonderful time. They love Tristan, and we were happy to be celebrating his third birthday with him.
Deuteronomy 4:35
You were shown these things so that you might know that the LORD is God; besides him there is no other
Thursday, February 3, 2011
Playates and Belly pain
We were able to go over to our friends house this Am. The kids were so happy to see Tristan. And it was nice to get out of the house, even though I am completely exhausted. Shannon and her husband are moving this week, in this wonderful New England weather, so the kids and I stayed at the new house with Tristan while Shannon made several trips from the old house to the new. When we get the three of them together, someone usually ends up naughty. Today the especially naughty one was Sophia. She dumped KITTY LITTER (thankfully it was completley clean and unused) all over the carpet, inside Tristans toy and also in his play kitchend!!! Ooooh I was so upset with her.
The kids had a great time. They were eating lunch and shortly after Sam started complaining of a lot more belly pain. I just feel so bad for him and wish that there was something that I could do to take away the pain. Poor little guy! But through it all he is just the sweetest boy ever. We came home from our playdate and had a quiet afternoon at home. Sophia colored with me, and Sam and I talked about him going to kindergarten:-) While we were sitting down eating dinner, Sam had another bought of belly pain. I just feel so bad for him. WE did restart the prevacid and stop the prilosec today. I wish that I could just take this pain from him forever. Watching your children suffer is so heartbreaking, but it is also an unbelievable reminder of God's love for us, can you imagine knowing what would happen to your only Son if you were God? Can you imagine the heartbreak of watching him be put to death? I can't! I just cannot even imagine. And as I struggle to help Sammy, I am reminded of how amazing God's love for me is, that he sent his Son to suffer for ME and YOU!!!
See the disaster they made?
Proverbs 22:11
He who loves a pure heart and whose speech is gracious will have the king for his friend.
The kids had a great time. They were eating lunch and shortly after Sam started complaining of a lot more belly pain. I just feel so bad for him and wish that there was something that I could do to take away the pain. Poor little guy! But through it all he is just the sweetest boy ever. We came home from our playdate and had a quiet afternoon at home. Sophia colored with me, and Sam and I talked about him going to kindergarten:-) While we were sitting down eating dinner, Sam had another bought of belly pain. I just feel so bad for him. WE did restart the prevacid and stop the prilosec today. I wish that I could just take this pain from him forever. Watching your children suffer is so heartbreaking, but it is also an unbelievable reminder of God's love for us, can you imagine knowing what would happen to your only Son if you were God? Can you imagine the heartbreak of watching him be put to death? I can't! I just cannot even imagine. And as I struggle to help Sammy, I am reminded of how amazing God's love for me is, that he sent his Son to suffer for ME and YOU!!!
See the disaster they made?
Proverbs 22:11
He who loves a pure heart and whose speech is gracious will have the king for his friend.
Friday, January 28, 2011
Preschool, playgym, miracles and Chest pain:-(
Sammy had a great day at Preschool today. I was able to speak with his teacher for a few moments after class to see how he is doing since he was gone for FIVE WEEKS!!! She said he is doing well. At the beginning of the year she had mentioned how sometimes children (especially boys) who have late summer birthdays are not quite ready for kindergarten when they turn five. I kind of have had that in my head this whole year. I was talking about it with her a little today, he doesn't do very well with his paperwork (letters, drawing, etc) but other than that he is doing very well. So if there is anyone out there that has chosen to keep their child in preschool an extra year, or send them to kindergarten what helped your decision?
We also got to go to a local "playgym" today. The playgym has one of those inflatable jump houses, slides, balls, monkey bars etc. We got to meet several of our friends there. The kids had a wonderful time. And then I got to meet this precious little miracle:-) I was praying for this baby before she was even conceived. I had taken care of her older brother in the hospital, and spent a lot of time talking with his mom. We have become friends, and she now attends the MOPS group that I go to. I was so excited to hear that this precious little love was on her way, and meeting her today was such a reminder of God's amazing love and miraculous ways.
Sam and Sophia had a blast running around with their friends. Sophia seems quite talented when it comes to soccer and she really enjoyed it.We had a wonderful time and then came home for lunch and quiet time. Sophia took a little nap, and hten when she woke up Sam fell asleep. When Matt came home from work, we were talking and Matt commented about Sam's color changing, and then he started coughing. He woke up. And after he woke up he started complaining that his chest is hurting. Not sure what this is about, but praying it is nothing.
I Samuel 1:27
I prayed for this child, and the LORD has granted me what I asked of him.
We also got to go to a local "playgym" today. The playgym has one of those inflatable jump houses, slides, balls, monkey bars etc. We got to meet several of our friends there. The kids had a wonderful time. And then I got to meet this precious little miracle:-) I was praying for this baby before she was even conceived. I had taken care of her older brother in the hospital, and spent a lot of time talking with his mom. We have become friends, and she now attends the MOPS group that I go to. I was so excited to hear that this precious little love was on her way, and meeting her today was such a reminder of God's amazing love and miraculous ways.
Sam and Sophia had a blast running around with their friends. Sophia seems quite talented when it comes to soccer and she really enjoyed it.We had a wonderful time and then came home for lunch and quiet time. Sophia took a little nap, and hten when she woke up Sam fell asleep. When Matt came home from work, we were talking and Matt commented about Sam's color changing, and then he started coughing. He woke up. And after he woke up he started complaining that his chest is hurting. Not sure what this is about, but praying it is nothing.
I Samuel 1:27
I prayed for this child, and the LORD has granted me what I asked of him.
Tuesday, January 25, 2011
IVIG
Sam had his IVIG today and as it seems to be the trend lately they had a tough time getting the IV in:-( He cried as soon as they pulled the IV cart in, between the ER on friday and the surgery he is COMPLETELY DONE with the medical issues right now. Poor guy! We see the immunologist next week, I will be curious to see what his thoughts/plans are as we move forward with the IVIG, if/when their will be a trial off it again, dosage changes etc etc.
We haven't had any more bleeding since the mild bloody nose last night, so I am so thankful. We stopped the amicar last night, so I will be praying that we have no recurrence of bleeding now that he is off.
We had a wonderful playdate today with lots of friends. It wasn't planned to be this way but we ended up with 9 kiddos here today:-) My house is going to take a while to recuperate but I am glad that Sammy is feeling up to running around and playing and making a mess with his friends.
Preschool tomorrow, then another playdate, and then MORE SNOW!!! I am done with winter I have decided. The negative temps, and wind chill are bad enough, and then the snow is so deep the kids can't even play in it. Oh well! Spring is coming right???
We haven't had any more bleeding since the mild bloody nose last night, so I am so thankful. We stopped the amicar last night, so I will be praying that we have no recurrence of bleeding now that he is off.
We had a wonderful playdate today with lots of friends. It wasn't planned to be this way but we ended up with 9 kiddos here today:-) My house is going to take a while to recuperate but I am glad that Sammy is feeling up to running around and playing and making a mess with his friends.
Preschool tomorrow, then another playdate, and then MORE SNOW!!! I am done with winter I have decided. The negative temps, and wind chill are bad enough, and then the snow is so deep the kids can't even play in it. Oh well! Spring is coming right???
Monday, January 24, 2011
After 3 weeks!!!!
After 3 weeks my handsome little guy FINALLY made it back to preschool today. The teacher seemed kind of nervous, as was I. But I know that God will protect him and that if I keep him out until all things are well and healthy he might never get there. He is feeling fabulous, he hasn't had any bloody noses the entire weekend, and like I said GOD WILL PROTECT HIM!! So I have a very happy little guy on my hands tonight, he had a lot of fun playing with his friends today. Tomorrow we are having another playdate with friends we haven't seen in a while, then we are heading into Childrens for his IVIG. And then wednesday another playdate. I am so thankful that God has placed so many wonderful people in my life, and in the lives of these kiddos:-)
In other news I did another shift at the hospital last night. It is hard to believe it has been six months since I hurt my back. And even harder to think that I may never get back to the baseline that I was at before. It is hard doing (in my opinion) NON-NURSING nurse work. I mean what I am doing is still important, but it isn't at all what I have in mind when I think of a nurse. And so I am struggling with "this new normal" and praying that soon I will get back to the place in which I can work in a setting at which I feel fulfilled and where I feel God calling me to go.
I also had a doctors appointment for myself today. I went to a specialist and got some information regarding my medical health as well as future medical decisions. I am surprised (in a good way)/ and disappointed in the results shared with me today. I know God knows and His plan is perfect so now we will just be praying for God's will in this situation
In other news I did another shift at the hospital last night. It is hard to believe it has been six months since I hurt my back. And even harder to think that I may never get back to the baseline that I was at before. It is hard doing (in my opinion) NON-NURSING nurse work. I mean what I am doing is still important, but it isn't at all what I have in mind when I think of a nurse. And so I am struggling with "this new normal" and praying that soon I will get back to the place in which I can work in a setting at which I feel fulfilled and where I feel God calling me to go.
I also had a doctors appointment for myself today. I went to a specialist and got some information regarding my medical health as well as future medical decisions. I am surprised (in a good way)/ and disappointed in the results shared with me today. I know God knows and His plan is perfect so now we will just be praying for God's will in this situation
Monday, January 17, 2011
Two weeks and counting!
It has been a rough two weeks, but I am so thankful to say that God has brought us through with flying colors. Sammy is doing well. He is drinking very well now, and I thankfully have no concerns with his hydration status. Food is still a bit of an issue, but he has STOPPED losing weight! He is back to 34lbs and hopefully I can fatten him up. He is playing and not quite as irritable.
And although he definitely had some apnea last week, last night he DIDN'T!!! They have said that it could take a full four to six weeks to know whether the apnea will be completely eliminated. But for now it is looking positive. They said we would need to repeat the sleep study probably so that I am sure is something we will be scheduling soon. We have pulmonology and immunolgy in the next two weeks. And then GI and hematology in february. ALWAYS something!
I had my follow up for my back today. I had gotten so anxious just prior to Sam's surgery that they were going to give my job away, or say that I had to come back full time the day of his surgery. But as always God prevailed, and everything was put on hold. Today I went and they are going to continue to the partial shifts, as well as the no lifting for another month. I am still awaiting an appointment with the back specialist but I am not sure when that will be
When Sam had his surgery my wonderful friend Meg came with me. I truly don't believe that I could have made it through that day without her. I was a mess, and she was truly God's hand extended to comfort me. She was so thoughtful and brought along her I-pod with some beautiful inspirational songs on it. I was so deeply touched by one of the songs, but sadly could not find it to share with you on YouTube. If you google "How would I know by Kathy Troccoli" it will take you to her site and you can listen. And I highly recommend that you do. THis song has spoken so much to me, the lyrics are below....
"If it wasn't for the times that I was down
if it wasn't for the times that I was bound
for all the times that I wondered how I would ever make it through
all the times that I couldn't see my way and I had to turn to You
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
I remember all the times I had to cry
and at the time all I could do was wonder why
Why would a God so kind and loving
allow me to go through all this pain
if I could see into the future
then I would know the joy I'd gain
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
How would I know that you could make a way out of no way
How would I know if I never had a need
Brother I know what your goin through
Sister I know cause I've been in your shoes
But I can truly say that I know what God can do
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
And although he definitely had some apnea last week, last night he DIDN'T!!! They have said that it could take a full four to six weeks to know whether the apnea will be completely eliminated. But for now it is looking positive. They said we would need to repeat the sleep study probably so that I am sure is something we will be scheduling soon. We have pulmonology and immunolgy in the next two weeks. And then GI and hematology in february. ALWAYS something!
I had my follow up for my back today. I had gotten so anxious just prior to Sam's surgery that they were going to give my job away, or say that I had to come back full time the day of his surgery. But as always God prevailed, and everything was put on hold. Today I went and they are going to continue to the partial shifts, as well as the no lifting for another month. I am still awaiting an appointment with the back specialist but I am not sure when that will be
When Sam had his surgery my wonderful friend Meg came with me. I truly don't believe that I could have made it through that day without her. I was a mess, and she was truly God's hand extended to comfort me. She was so thoughtful and brought along her I-pod with some beautiful inspirational songs on it. I was so deeply touched by one of the songs, but sadly could not find it to share with you on YouTube. If you google "How would I know by Kathy Troccoli" it will take you to her site and you can listen. And I highly recommend that you do. THis song has spoken so much to me, the lyrics are below....
"If it wasn't for the times that I was down
if it wasn't for the times that I was bound
for all the times that I wondered how I would ever make it through
all the times that I couldn't see my way and I had to turn to You
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
I remember all the times I had to cry
and at the time all I could do was wonder why
Why would a God so kind and loving
allow me to go through all this pain
if I could see into the future
then I would know the joy I'd gain
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
How would I know that you could make a way out of no way
How would I know if I never had a need
Brother I know what your goin through
Sister I know cause I've been in your shoes
But I can truly say that I know what God can do
How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know
Sunday, January 2, 2011
Tomorrow...
Tomorrow is the day
The day of the surgery
The day I have been praying for
The day I have been terrified about
The day I have been dreading
Tomorrow is
The day that God's will will prevail
The day that Satan's fight for Sam's health will be defeated
The day that I will rejoice for God's healing
The day Sammy will be able to breathe
The day I will be able to focus on God
The day we will be surrounded by love and prayers
The day that God will reveal Himself in a bigger way
The day that the Lord has made
The surgery is tomorrow afternoon. We will go in early so that he can get IV medication to help his blood function better to help prevent bleeding. I am so blessed to have the prayers of so many surrounding us, and also to have a support system of people coming into Boston, taking care of Sophia, and praying. Thank you to all of you! We couldn't get through this without all of you!!!
On New Years Eve we got to have Darius over to watch. Sam absolutely loves him! He wanted to hold him constantly. Sophia on the other hand, was jealous and didn't want me to hold him at all.





Phillipians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
The day of the surgery
The day I have been praying for
The day I have been terrified about
The day I have been dreading
Tomorrow is
The day that God's will will prevail
The day that Satan's fight for Sam's health will be defeated
The day that I will rejoice for God's healing
The day Sammy will be able to breathe
The day I will be able to focus on God
The day we will be surrounded by love and prayers
The day that God will reveal Himself in a bigger way
The day that the Lord has made
The surgery is tomorrow afternoon. We will go in early so that he can get IV medication to help his blood function better to help prevent bleeding. I am so blessed to have the prayers of so many surrounding us, and also to have a support system of people coming into Boston, taking care of Sophia, and praying. Thank you to all of you! We couldn't get through this without all of you!!!
On New Years Eve we got to have Darius over to watch. Sam absolutely loves him! He wanted to hold him constantly. Sophia on the other hand, was jealous and didn't want me to hold him at all.
Phillipians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
Sunday, December 19, 2010
Grace
1 Corinthians 15:10 (NIV) But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them--yet not I, but the grace of God that was with me.
Today I was blessed enough to go to church and have Sam prayed over. Sam and I were surrounded by God's love and prayers. It was wonderful to be reminded that in this journey we are not at all alone. And I do sometimes feel alone in this journey. I know I am just getting so overtired with the apnea alarms and not sleeping. I know that I am feeling overwhelmed with the planning and preparing for the surgery. I know that I feel like I am falling apart and not doing ANY of this good enough. I know that I fail miserably so often with so much of what I try to do. But you know what else? I know that God loves me despite of me, that HE loves me no matter what I mess up. That He carries me when I can no longer walk on my own, and I am forever thankful.
A woman in my church came up to me today after the service and was talking to me. She said how she admires how I carry myself with so much grace! I was so taken aback by this compliment, so stunned! Especially with how much I have been struggling the last few days. And AGAIN God comes to my rescue, to build me up, to encourage and strengthen me! She spoke about from the time that I was 15 and different things that I have gone through, how she has watched me and admired how I carried myself with so much grace. I certainly don't feel that I am what she said, but I was so so blessed by this.
It is amazing how God just places people in your life at the exact moment in time to just bless you in ways you had no idea. Her compliments today give me the strenght and courage to keep on moving to keep on trying, to keep on believing. Thank you Kristine, for reminding me of my purpose in this life, the purpose of living my life to show the world God's love!!!
Today I was blessed enough to go to church and have Sam prayed over. Sam and I were surrounded by God's love and prayers. It was wonderful to be reminded that in this journey we are not at all alone. And I do sometimes feel alone in this journey. I know I am just getting so overtired with the apnea alarms and not sleeping. I know that I am feeling overwhelmed with the planning and preparing for the surgery. I know that I feel like I am falling apart and not doing ANY of this good enough. I know that I fail miserably so often with so much of what I try to do. But you know what else? I know that God loves me despite of me, that HE loves me no matter what I mess up. That He carries me when I can no longer walk on my own, and I am forever thankful.
A woman in my church came up to me today after the service and was talking to me. She said how she admires how I carry myself with so much grace! I was so taken aback by this compliment, so stunned! Especially with how much I have been struggling the last few days. And AGAIN God comes to my rescue, to build me up, to encourage and strengthen me! She spoke about from the time that I was 15 and different things that I have gone through, how she has watched me and admired how I carried myself with so much grace. I certainly don't feel that I am what she said, but I was so so blessed by this.
It is amazing how God just places people in your life at the exact moment in time to just bless you in ways you had no idea. Her compliments today give me the strenght and courage to keep on moving to keep on trying, to keep on believing. Thank you Kristine, for reminding me of my purpose in this life, the purpose of living my life to show the world God's love!!!
Thursday, December 16, 2010
Sleep Apnea
Oh my goodness this sleep apnea is kicking my butt. After getting the results of Sam's sleep study last week, and definitely realizing that the surgery is needed because the apnea is "moderate to severe" I have become more anxious about it. Throw in this recent illness, and the CONSTANT alarming from his monitor last night and I am exhausted.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!
Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!
Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.
Labels:
apnea,
children's hospital,
ENT,
friends,
hospital,
respiratory,
sleep
Saturday, December 11, 2010
Phew what a week!!!
This week I have certainly been blessed by my faith. With the birth of a precious miracle, and with amazing friends (thanks Meg!), with all kinds of distressing info about Sam, I am just so thankful that God loves me and is carrying me through all of this stress. I can't imagine this life without God.
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)


Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?

Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.

Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.

Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)
Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?
Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.
Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.
Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)
Labels:
children's hospital,
ENT,
faith,
friends,
GI,
Mass General,
sleep,
surgery
Friday, December 3, 2010
Scrub a dub dub....
Sam and Sophia are in the tub. Oh my goodness, how these two precious kiddos blessed me tonight with their silliness with the bath foam. They had so much fun in the tub. I put some vapor bath in the tub to see if we could help Sam breathe better. They had tons of bubbles in the tub and also they had the bath foam. So much fun was had by all:-)
I had a follow up appointment with the workman's comp doctor today. He is continuing to keep me out of work for at least another two weeks. AT this point I am just wishing that things were better. But on the other hand, I am thankful that I am not back at work, as Sammy has lots of doctors appointments coming up. As well as his first Christmas play at preschool! I am so excited about it!
I also was so blessed today to have a visit with a dear friend. You know those days when life just is a little overwhelming, and you start to get down in the dumps? That was how my day/week has been. I can't even exactly say what is the cause, but just that I was struggling. And then my friend is here, and we have this wonderful discussion about faith and strength and learing to trust God in all of our situations. I am just so encouraged! Thanks Meg! Even this little visit really wasn't supposed to take place today, but God knew that I needed this and I am so very thankful. God just always loves us in ways we never expect, and today I was loved on by God through Meg:-)
"I pray that you, being rooted and established in love, and may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know His love that surpasses knowledge- that you may be filled to the measure of all the fullness of God." Ephesians 3:17-19
Thursday, December 2, 2010
Papa
My friend Shannon came over with her little guy Tristan. The kiddos got to play for a while. Poor Sammy isn't feeling very well and was very sad that Sophia and Tristan didn't really want to play with him. Poor little guy was very sad. Sophia and Tristan have know each other since they were infants (probably like two or three months old). They get along really well and have a lot of fun.
My wonderful father in law blessed us again with his assistance and a little playtime with the kiddos. Matt is trying to finish up the electrical in time for the insulation guys next week, so his dad graciously came over to help.
Sam is getting sicker again:-( I placed a call to his primary today to see if she had any thoughts of anything that I could do to help this respiratory thing get better. She is going to be checking with his hematologist to see if we can try some type of medication to at least thin his secretions. Praying that we can, and that this doesn't turn into a full blown sinus infection. Praying also that this doesn't turn into increased apnea and respiratory distress. I honestly don't know that I could handle another week like last week....thankfully I know that I don't really have to, but God can....but still praying that we don't have to cross that bridge again.
"The Lord is Good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7
Thursday, November 25, 2010
Trying to have the right attitude
So I am struggling with a bad attitude this week. :-( I was so hurt and disappointed when we asked someone for help this week, so that we would have someone to watch Sophia while Sammy was in the hospital, and when this person said no, it made me furious, not to mention was so hurtful. I keep telling myself not to question others choices, but it is so hard sometimes. I know that if someone said to me could you watch my baby, while my older child is in the hospital for a couple hours, I would do whatever I possibly could to help. So it is hard for me to understand when people won't help when it is so obviously needed. But all that aside this has reminded me this week that God has filled my life with some amazing friends and family that are willing to help. And I am so incredibly blessed.
In His perfect timing as always, after we learned that we still needed to find someone, a friend called and heard how upset I was by my voice, and said hey why don't I take her. What a blessing! And so it was perfect. Sophia had a wonderful time, and I was able to not be concerned about her knowing that she was being loved on completely.
On this journey with Sam, we have just been blessed so richly wish so many people that give of themselves so selflessly. Another friend when she heard I was looking for someone for Sophia, also offered. God has filled our lives with some amazingly wonderful people, who love us and are willing to do whatever they can to help. I am just so touched by so many. And I have to focus on that, I just have to...
Onto the rest of the story, so Sammy and I went up to the hospital (which by the way, since it was our local hospital and our pediatrician) he was super excited about, another tremendous blessing:-) Anyways we got up there and he got all hooked up to the monitors and we watched movies. He had more than 40 alarms in about a half hour time frame! I said to the pediatrician in the morning, see this is why I don't sleep! He had 3 episodes where he stopped breathing for more than 20seconds, and many more episodes where it was less than twenty seconds. The doctor seemed suprised at how many there were. She asked when we would be going back to see his doctor at Childrens and when she heard that it wasn't for two weeks, she decided she was going to contact him herself. Not sure what her thoughts/plans are....I am kind of hoping that we have a concrete plan in place by next week. I am praying that sometime soon we will be able to sleep at night without having our hand on his chest to make sure he is still breathing.
In His perfect timing as always, after we learned that we still needed to find someone, a friend called and heard how upset I was by my voice, and said hey why don't I take her. What a blessing! And so it was perfect. Sophia had a wonderful time, and I was able to not be concerned about her knowing that she was being loved on completely.
On this journey with Sam, we have just been blessed so richly wish so many people that give of themselves so selflessly. Another friend when she heard I was looking for someone for Sophia, also offered. God has filled our lives with some amazingly wonderful people, who love us and are willing to do whatever they can to help. I am just so touched by so many. And I have to focus on that, I just have to...
Onto the rest of the story, so Sammy and I went up to the hospital (which by the way, since it was our local hospital and our pediatrician) he was super excited about, another tremendous blessing:-) Anyways we got up there and he got all hooked up to the monitors and we watched movies. He had more than 40 alarms in about a half hour time frame! I said to the pediatrician in the morning, see this is why I don't sleep! He had 3 episodes where he stopped breathing for more than 20seconds, and many more episodes where it was less than twenty seconds. The doctor seemed suprised at how many there were. She asked when we would be going back to see his doctor at Childrens and when she heard that it wasn't for two weeks, she decided she was going to contact him herself. Not sure what her thoughts/plans are....I am kind of hoping that we have a concrete plan in place by next week. I am praying that sometime soon we will be able to sleep at night without having our hand on his chest to make sure he is still breathing.
Labels:
doctors,
friends,
hospital,
Thankful,
Thanksgiving
Friday, November 12, 2010
Ben and Josiah
Oh my goodness, in the last year I have been so blessed to have met a woman named Meg and her family. She has four children, two boys and two girls. She is a Christian and her and her husband are an inspiration to me. They have been through alot, and yet their faith remains so strong and visible. It is inspiring. I so enjoy her company, and my kids absolutely adore her children. It is just fabulous. God has truly blessed me with this friendship. It is nice because I bring the kids on a playdate and mommy gets to have a mommy daate:-)
AT this get together the kiddos made english muffin pizza. Sam and Sophia are totally in to cooking lately. Ben and Josiah are supposedly not identical twins, but I don't believe it. Sam seems to be able to tell them apart, but I certainly can't. This day though Ben was wearing blue so that is how I knew who was who.
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