We had our meeting at the pre-op clinic. They are going ahead with the surgery on monday. They were quite thorough with Sam's medical history, and seemed a little overwhelmed with some of the oddities of Sam at times. They have quite the significant bleeding plan in place. I felt much better about it after I knew what their plans were as far as the bleeding goes. We will actually go in early at which time he will get medications that will cause his blood to clot normally. This medication will be given IV, and then will continue to be giving every six hours for 2 weeks I believe. So we will be having to wake him once he is out of the hospital to give him this medication. But if it prevents bleeding then who cares right?
So we will head in on monday and just be praying fervently that all goes smoothly that there is no hemorrhaging, that the pain is well controlled and that he recuperates faster than anyone expected.
Thursday, December 30, 2010
Wednesday, December 29, 2010
Last night....
-We had NO APNEA!!!
-No
-fever
-Some coughing, but much much better
So thankful for a restful night for all of us:-) I have a follow up appointment with the workman's comp doctor today, so I am praying that goes well!
Have a blessed day!!!
-No
-fever
-Some coughing, but much much better
So thankful for a restful night for all of us:-) I have a follow up appointment with the workman's comp doctor today, so I am praying that goes well!
Have a blessed day!!!
Tuesday, December 28, 2010
Pre-eclampsia:-(
I heard over the weekend about a sweet girl that is 19 years old and pregnant with her first sweet baby girl. She was diagnosed this weekend with pre-eclampsia and is 29wks pregnant. As of today she is still pregnant, and her blood pressures are a bit better than they had been. In speaking with several people that know her or are family members, I am again so annoyed that everyone is so clueless about this horrible disease. I just don't understand! People DIE from this and they die often! The risks are great, and so many times people have absolutely no idea what the warning signs are, or the risks involved. Please lift Kayley and her sweet baby girl in your prayers.
Another friend had her daughter the friday before Christmas. She had Pre-eclampsia with her second pregnancy AFTER she delivered (a week after)!!! and ended up in the ICU after she had the baby and was separated from the baby for several days. Her third pregnancy, she was delivered a week early becuase her pressures were creeping up. She delivered on friday and on monday her blood pressures started getting HIGHER. The covering doctor was notified and reminded of her history. And he did NOTHING!!! HEr pressures were 200s over 100s by the night time and again the the covering MD did NOTHING!!! My friend thankfully paged her own doctor at home at 1am letting her know what was going on. More blood pressure meds were ordered, and then she ended up being admitted to the ICU again!
I just don't get it! I don't understand why such a horrifying disease is so unimportant and not treated pro-actively? Why? Why?
I am so thankful that my doctor is pro-active. I am thankful that she followed me so closely with Sophia and kept both of us safe. I am thankful that she is referring me to a high risk OB this year. NOT that I am pregnant!!! I am not but I want to know if there is anything that I can do to prevent this from happening again.
Totally different post than anything lately, but hearing people struggle with this brings back so many unpleasant memories, but also beautiful memories of my very much alive children, and the heartbreak of knowing that other peoples children have not survived:-( Know that I am praying for you tonight!
Another friend had her daughter the friday before Christmas. She had Pre-eclampsia with her second pregnancy AFTER she delivered (a week after)!!! and ended up in the ICU after she had the baby and was separated from the baby for several days. Her third pregnancy, she was delivered a week early becuase her pressures were creeping up. She delivered on friday and on monday her blood pressures started getting HIGHER. The covering doctor was notified and reminded of her history. And he did NOTHING!!! HEr pressures were 200s over 100s by the night time and again the the covering MD did NOTHING!!! My friend thankfully paged her own doctor at home at 1am letting her know what was going on. More blood pressure meds were ordered, and then she ended up being admitted to the ICU again!
I just don't get it! I don't understand why such a horrifying disease is so unimportant and not treated pro-actively? Why? Why?
I am so thankful that my doctor is pro-active. I am thankful that she followed me so closely with Sophia and kept both of us safe. I am thankful that she is referring me to a high risk OB this year. NOT that I am pregnant!!! I am not but I want to know if there is anything that I can do to prevent this from happening again.
Totally different post than anything lately, but hearing people struggle with this brings back so many unpleasant memories, but also beautiful memories of my very much alive children, and the heartbreak of knowing that other peoples children have not survived:-( Know that I am praying for you tonight!
Antibiotics, IVIG and special friends
Sam was so so happy to see his friend Khadeisha. They had so much fun playing with the I-Pad:-)
So I met with Sam's doctor first thing this morning before driving into the city for the IVIG. She said he had very purulent drainage:-( So we have started our third course of antibiotics for this crazy sinus infection that we just can't seem to get past. It is crazy, last winter he essentially had one continuous sinus infection, which is what led them into wanting to remove his tonsils. We then started having all the apneic episodes, and that is what has convinced them to take out the tonsils. But the ORIGIONAL problem is what may prevent us from doing this! Uggghh. A wonderful friend said to me today that this might be God's way of telling us that right now isn't the right time to do this, so I am waiting on His guidance.
We went into Children's today to have his IVIG. They now have a beautiful new unit. We had a nurse that we weren't familiar with but she was wonderful. And of course our favorite child life specialist Khadeisha was there. Sam just loves her. She is going to come visit him when he is in the ICU next week. We are so thankful for her. I am not sure who the actual donor was, but many many Apple I-Pads were donated to Children's Hospital! Sam absolutely loved playing with it. I must admit I was pretty enamored with it myself:-) He played with one almost the entire time we were there.
Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
So I met with Sam's doctor first thing this morning before driving into the city for the IVIG. She said he had very purulent drainage:-( So we have started our third course of antibiotics for this crazy sinus infection that we just can't seem to get past. It is crazy, last winter he essentially had one continuous sinus infection, which is what led them into wanting to remove his tonsils. We then started having all the apneic episodes, and that is what has convinced them to take out the tonsils. But the ORIGIONAL problem is what may prevent us from doing this! Uggghh. A wonderful friend said to me today that this might be God's way of telling us that right now isn't the right time to do this, so I am waiting on His guidance.
We went into Children's today to have his IVIG. They now have a beautiful new unit. We had a nurse that we weren't familiar with but she was wonderful. And of course our favorite child life specialist Khadeisha was there. Sam just loves her. She is going to come visit him when he is in the ICU next week. We are so thankful for her. I am not sure who the actual donor was, but many many Apple I-Pads were donated to Children's Hospital! Sam absolutely loved playing with it. I must admit I was pretty enamored with it myself:-) He played with one almost the entire time we were there.
Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
Monday, December 27, 2010
Sammy is sick:-(
Sammy seems to be getting sicker. He had such a bad coughing spell this evening (about two hours after albuterol) that he actually vomited and was choking. The poor little guy was struggling to breathe. I am meeting his doctor first thing in the morning, but am praying that nothing happens during the night that causes us to need to go to the ER.
They may postpone the surgery! Would you please join me in prayer that they will continue with the surgery? That Sam will quickly get healthy and that they can proceed as planned? It has been very stressful getting all the plans in place as far as a place for Sam and I to stay after he is discharged from the hospital but still needs to be cloes by, and childcare for Sophia, and working my doctors appointments into the mix. I am just wanting this whole process to be completely behind us. Not to mention that the tonsils are probably what is causing all of the sinus infections and respiratory symptoms. So we are really probably going to be sick until they are out.
So I am just praying that they can come out next week, and then we can start the recovery process....AND trasition AWAY from the apnea monitor!!!:-)
Psalm 91:14-16
14. God says, I will save those who love me and I will protect those who acknowledge me as Lord.
15. When they call to me, I will answer them; when they are in trouble, I will be with them, I will rescue them and honor them.
16. I will reward them with long life; and I will save them.
They may postpone the surgery! Would you please join me in prayer that they will continue with the surgery? That Sam will quickly get healthy and that they can proceed as planned? It has been very stressful getting all the plans in place as far as a place for Sam and I to stay after he is discharged from the hospital but still needs to be cloes by, and childcare for Sophia, and working my doctors appointments into the mix. I am just wanting this whole process to be completely behind us. Not to mention that the tonsils are probably what is causing all of the sinus infections and respiratory symptoms. So we are really probably going to be sick until they are out.
So I am just praying that they can come out next week, and then we can start the recovery process....AND trasition AWAY from the apnea monitor!!!:-)
Psalm 91:14-16
14. God says, I will save those who love me and I will protect those who acknowledge me as Lord.
15. When they call to me, I will answer them; when they are in trouble, I will be with them, I will rescue them and honor them.
16. I will reward them with long life; and I will save them.
One week!
Officially the count down has begun. One week from today is his surgery. And although I am trying to remain positive and unafraid the things that are running through my mind are sad/hard things...
First the hardest part of surgery for me is when they allow me to go into the OR with him and they allow me to hold him as they put him under general anesthesia. There is something that is just horrifying to watch as your child's eyes roll back in their head and they get limp in your arms.:-( HARD!!! But I truly wouldn't have it any other way, regardless of how hard it is for me, I would never want him to go through that alone.
Second, the whole ICU part of this admission. We haven't been in the ICU with him before (praise God!!!) so I am wondering how he will do. The ICU is such a different atmosphere of any other area. I am praying that it isn't too traumatizing for him. And also that some of our friends/nurses/clowns/child life specialist are able to come see him to help him be more at home while we are there.
Third, the pain! Poor little guy! He has had a cough that has worsened over the weekend and now is complaining of a sore throat. Because of that he hasn't really been eating at all this weekend. I can't imagine how hard it is going to be after the surgery for him. He has already lost almost two pounds since thanksgiving.
And of course there is the whole bleeding disorder part of things. Apparently they will be pre-medicating him prior to surgery with the medication they used prior to the last scope that they did. And he didn't bleed after that so I am praying that the medication has the same affect. I know that there had been some discussion as to whether they would actually transfuse some platelets prior to the procedure. I am not sure if that is the plan or not.
We have been in the hospital so much with this little miracle boy of ours. And he always has the best attitude and a smile on his face. My prayer is that this will continue. The posted picture is one of my favorite pictures of him, it has his personality written all over it. He had just woken from anesthesia and was so happy. He is SUCH an amazing blessing to us, God has given us this amazing gift, and He has given him this wonderful amazing personality. I can't wait to see where God takes him in this journey.
First the hardest part of surgery for me is when they allow me to go into the OR with him and they allow me to hold him as they put him under general anesthesia. There is something that is just horrifying to watch as your child's eyes roll back in their head and they get limp in your arms.:-( HARD!!! But I truly wouldn't have it any other way, regardless of how hard it is for me, I would never want him to go through that alone.
Second, the whole ICU part of this admission. We haven't been in the ICU with him before (praise God!!!) so I am wondering how he will do. The ICU is such a different atmosphere of any other area. I am praying that it isn't too traumatizing for him. And also that some of our friends/nurses/clowns/child life specialist are able to come see him to help him be more at home while we are there.
Third, the pain! Poor little guy! He has had a cough that has worsened over the weekend and now is complaining of a sore throat. Because of that he hasn't really been eating at all this weekend. I can't imagine how hard it is going to be after the surgery for him. He has already lost almost two pounds since thanksgiving.
And of course there is the whole bleeding disorder part of things. Apparently they will be pre-medicating him prior to surgery with the medication they used prior to the last scope that they did. And he didn't bleed after that so I am praying that the medication has the same affect. I know that there had been some discussion as to whether they would actually transfuse some platelets prior to the procedure. I am not sure if that is the plan or not.
We have been in the hospital so much with this little miracle boy of ours. And he always has the best attitude and a smile on his face. My prayer is that this will continue. The posted picture is one of my favorite pictures of him, it has his personality written all over it. He had just woken from anesthesia and was so happy. He is SUCH an amazing blessing to us, God has given us this amazing gift, and He has given him this wonderful amazing personality. I can't wait to see where God takes him in this journey.
Sunday, December 26, 2010
Christmas
Christmas morning was spent here at our house. Matt, the kids and I had a nice morning together as a family. They each got something that they each were really excited about: Sam got a remote control tank (I think Daddy was excited about this too:-)) and the other thing he was really interested in was the Operation Game (he had played it the last time he was in the hospital) and Sophia got a lot of dress up clothes and a "Bitty Baby" which is a sweet baby doll made by the American Girl dolls. She seems to really love her baby, whom she has named Baby Jess/Jessie.
Sophia also got a tutu, which she put on immediately before opening anything else
Princess Sophia
Sam and Daddy with the new tank
My parents came over to spend some time with the kids. My mom has talked about how when we were all young how her parents always came to see us so we could be at home with our new stuff. I think that I am starting to feel as though I don't want to drag the kids all over the place trying to see everyone, so I think that I will request this in the future. That people are more than welcome to come to our house. If you have both sides of the family close how do you divide up the holidays?
After spending the morning at home, we went to Matt's parents in the afternoon for Christmas Dinner. By early afternoon Sammy had gotten a fever and had frequent coughing. I gave him albuterol which seemed to help the cough. We went over and had a delicious dinner. Shortly after dinner Sam started complaining that he was sick and had some diarrhea. His fever then got higher and he fell asleep. He slept for quite a while. Once he woke up he perked up and seemed to be feeling better.
Sophia taking Baby Jessie with her. She wanted to bring Jessie's high chair too:-)
Grandpa and Sammy cuddling on the couch
Cousins Naomi and Andrew
Sophia and Chris
Sophia and Andrew
Sammy, Daddy and "Baby Jessie" taking a nap
Sophia also got a tutu, which she put on immediately before opening anything else
Princess Sophia
Sam and Daddy with the new tank
My parents came over to spend some time with the kids. My mom has talked about how when we were all young how her parents always came to see us so we could be at home with our new stuff. I think that I am starting to feel as though I don't want to drag the kids all over the place trying to see everyone, so I think that I will request this in the future. That people are more than welcome to come to our house. If you have both sides of the family close how do you divide up the holidays?
After spending the morning at home, we went to Matt's parents in the afternoon for Christmas Dinner. By early afternoon Sammy had gotten a fever and had frequent coughing. I gave him albuterol which seemed to help the cough. We went over and had a delicious dinner. Shortly after dinner Sam started complaining that he was sick and had some diarrhea. His fever then got higher and he fell asleep. He slept for quite a while. Once he woke up he perked up and seemed to be feeling better.
Sophia taking Baby Jessie with her. She wanted to bring Jessie's high chair too:-)
Grandpa and Sammy cuddling on the couch
Cousins Naomi and Andrew
Sophia and Chris
Sophia and Andrew
Sammy, Daddy and "Baby Jessie" taking a nap
Christmas Eve
Christmas Eve this year was a busy wonderful day. Unfortunately Matt had to work so he was unable to join in the day with us. We started the day by going to my mom's, where four of my five siblings and spouses were. Unfortunately my brother DJ and his wife Lyndsea were in florida so they couldn't join us. We had a great time at mom's playing with friends and family.
Sammy with Dennis and Johanna's snake "Moses"
My beautiful new nephew Darius Jeremiah
Sam and his friend Kaedan
Sophia and Sydney
We left my parents house and then went to a church that we had not attended before. Our friend Joan was actually singing several songs and invited us to see her. The kids did really well. They got loud occasionally but they did a really good job. I was so thankful to attend.
After that we went to Matt's grandmothers house. It was super busy there this year. The kids had a blast playing with their cousins, Allayna, Jacob and Ava. "Nana" read the Christmas story to the kids, and then asked them questions about His birth. It was really cool to watch. We then sang several songs, and Sophia was thrilled with the singing.
It was close to 10 when we got home. The kids went to bed and then the Christmas morning preparations began...
Luke 2:10-11
10And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.
11For unto you is born this day in the city of David a Saviour, which is Christ the Lord.
Sammy with Dennis and Johanna's snake "Moses"
My beautiful new nephew Darius Jeremiah
Sam and his friend Kaedan
Sophia and Sydney
We left my parents house and then went to a church that we had not attended before. Our friend Joan was actually singing several songs and invited us to see her. The kids did really well. They got loud occasionally but they did a really good job. I was so thankful to attend.
After that we went to Matt's grandmothers house. It was super busy there this year. The kids had a blast playing with their cousins, Allayna, Jacob and Ava. "Nana" read the Christmas story to the kids, and then asked them questions about His birth. It was really cool to watch. We then sang several songs, and Sophia was thrilled with the singing.
It was close to 10 when we got home. The kids went to bed and then the Christmas morning preparations began...
Luke 2:10-11
10And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.
11For unto you is born this day in the city of David a Saviour, which is Christ the Lord.
Saturday, December 25, 2010
Friday, December 24, 2010
Merry Christmas EVE!!!
Sammy would appear to be getting very sick respiratory wise. Please pray for him! He is coughing so much that he is having trouble catching his breath. Doctor is calling in albuterol but it isn't ready yet:-(
Yesterday was a TERRIBLE day! I had to go into my job at which point they told me that they were giving my job to someone else! I cried! I was so upset. Here I was being told what a wonderful employee I was, and they were telling me that they were sorry but they couldn't wait for my back injury to fully heal (an injury that occured at work) and therefore they would allow me to work in employee health for a little while, until I could go back to regular duties, but if at that point they didn't have any jobs then I would lose my job:-(
I was so so sad and overwhelmed. I started making some phone calls, and everyone was saying that they could do this. That there was a statute of limitations. I was trying so hard not to panick. But it was so overwhelming. I couldn't apply for a new job with my back injury. No one would want to hire me:-(
But as always God interviened!!! I still am smiling about how this all came to play out. After talking with my union rep, the head of the union, and the union lawyer and having them each tell me that the hospital could do this I was so upset. But the lawyer said that he was going to call the VP of the hospital and talk with him about the offer that they were giving me. In that time frame the lawyer remember something about a previous case that he had assisted with and dug deep into the contract and found something that said that they could NOT DO THIS!!!! They have to keep my position for me until I am ready to go back, whether it is tomorrow or a long time from now! I am so thankful that I decided to pursue this, that God put a check in my spirit to look further because if He didn't I would probably be out of job next month! Praise God for ALWAYS ALWAYS being there!!!
Today we will be celebrating the impending birth of Our Saviour! I am so grateful that I live in a family that celebrates this! We will be going to my mom's for Jesus's birthday party this afternoon, then to church this evening for a candlelight service and then to Matt's grandmothers. It will be a busy fun filled day! Praying that your day is wonderful!
Wednesday, December 22, 2010
When all else fails: TRUST!
Goodness it is so easy lately to get caught up in being anxious and afraid. I don't know why I keep falling into this place of anxiety. Today I got a call from the employee health nurse at the hospital. She was less than pleasant, and was quite rude about the fact that I am still out of work. She said that I couldn't wait until I had my scheduled appt to go back to the workman's comp doctor and that I had to go to see him next week. She then went on to say that I needed to get back to work and that she had plenty of office work for me to do....so I started to get anxious about the schedule and how I could work and take care of the kids and deal with all of the upcoming visits with Sam...
Then shortly after I got off the phone with her there was another phone call from the hospital stating that I needed to come in as soon as possible to meet with the VP of human resources and that my boss was also going to be there. Now at this point I really started to get anxious. Wondering why this meeting was occuring? What they were going to say? Wondering a whole lot of things, but not liking what I was thinking were the answers...
Fast forward a little while, I started just focusing on God and the knowledge that He ALWAYS knows, always cares, and will take care of us... So tonight I am wondering what tomorrow will hold, but also resting in Him and the knowledge that in Him we will definitely be ok:-)
I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Then shortly after I got off the phone with her there was another phone call from the hospital stating that I needed to come in as soon as possible to meet with the VP of human resources and that my boss was also going to be there. Now at this point I really started to get anxious. Wondering why this meeting was occuring? What they were going to say? Wondering a whole lot of things, but not liking what I was thinking were the answers...
Fast forward a little while, I started just focusing on God and the knowledge that He ALWAYS knows, always cares, and will take care of us... So tonight I am wondering what tomorrow will hold, but also resting in Him and the knowledge that in Him we will definitely be ok:-)
I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Tuesday, December 21, 2010
Monday, December 20, 2010
Breath Of Heaven (Mary's Song) - Amy Grant
Sam is doing ok today. He is tired, but understandably so. The coughing/wheezing that has occured over the last few days seems to be improving. He seemed to have a little bit of blood in his stool today, but I am praying that this is not anything and that tomorrow will be a good day for him. I am starting to get a little anxious about his surgery, knowing that it is two weeks from today. Praying that the ICU isn't too scary for him at Children's. Praying that his pain will be well controlled, praying that there will be no hemorraging, and praying for God's will throughout this whole experience, and that I can shine God's light. Going through this Christmas season and the fears and health problems that have been going on with Sam, has really got me thinking about long ago.....
I have been thinking a lot in the last week or so about Mary and Joseph and the thoughts that must have gone through their minds as they learned that they were expecting a child, but not only a child, but the Son of God! As a first time mom there were so many things that I was worried about messing up. And now as I have two children, I look at each of them so often and ask myself if I am doing right by them, if I am teaching them as God would want me to. God bless Mary for her righteous heart, for carrying our Saviour, for obeying God's plan for her life.
Below a song that has spoken to me often through the years. It brings it back home that Mary was a mom just like me, yet she was chosen to carry my Saviour! Enjoy!!!
I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father you have come
And chosen me now
To carry your son
I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now
[Chorus:]
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven
Do you wonder as you watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me
I have been thinking a lot in the last week or so about Mary and Joseph and the thoughts that must have gone through their minds as they learned that they were expecting a child, but not only a child, but the Son of God! As a first time mom there were so many things that I was worried about messing up. And now as I have two children, I look at each of them so often and ask myself if I am doing right by them, if I am teaching them as God would want me to. God bless Mary for her righteous heart, for carrying our Saviour, for obeying God's plan for her life.
Below a song that has spoken to me often through the years. It brings it back home that Mary was a mom just like me, yet she was chosen to carry my Saviour! Enjoy!!!
I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father you have come
And chosen me now
To carry your son
I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now
[Chorus:]
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven
Do you wonder as you watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me
Sunday, December 19, 2010
Christmas Traditions
(3 posts below this one, I got behind this week)
Sophia started to get a little fiesty and Daddy had to reel her in:-)
Miss Twinkle Toes herself trying to twirl next to a table with several candles on it
Sammy very carefully lighting his candle
Sophia lighting her candle with help from Uncle Bud
Sophia enjoying sitting on Uncle Bud's lap and singing Christmas Songs
Sam and Dasanee, not quite paying attention
Auntie Irene, smiling as always
Johanna snuggling our new nephew
My very first Christmas 30 years ago, my aunt and uncle started a wonderful traditions which has been continued intermittently through the years. Sometime in the month of December, we would read through the Christmas Story. But as we read through it we would also be singing the songs that corresponded with those verses. My aunt is a wonderfully talented musician, and she blessed us tremendously today with her amazing talent.
I am not sure how many people were there today, but there was quite a large crowd. It was so wonderful to focus on the ONLY reason for the season:-) With each different passage that is read, a child gets to light a candle. My children were thrilled to pieces to do this. When Sammy lit his, he wanted to do it all by himself. And when he went to blow it out, he also blew out several other candles that had already been lit:-) We were all chuckling
Sophia started to get a little fiesty and Daddy had to reel her in:-)
Miss Twinkle Toes herself trying to twirl next to a table with several candles on it
Sammy very carefully lighting his candle
Sophia lighting her candle with help from Uncle Bud
Sophia enjoying sitting on Uncle Bud's lap and singing Christmas Songs
Sam and Dasanee, not quite paying attention
Auntie Irene, smiling as always
Johanna snuggling our new nephew
My very first Christmas 30 years ago, my aunt and uncle started a wonderful traditions which has been continued intermittently through the years. Sometime in the month of December, we would read through the Christmas Story. But as we read through it we would also be singing the songs that corresponded with those verses. My aunt is a wonderfully talented musician, and she blessed us tremendously today with her amazing talent.
I am not sure how many people were there today, but there was quite a large crowd. It was so wonderful to focus on the ONLY reason for the season:-) With each different passage that is read, a child gets to light a candle. My children were thrilled to pieces to do this. When Sammy lit his, he wanted to do it all by himself. And when he went to blow it out, he also blew out several other candles that had already been lit:-) We were all chuckling
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!!!
Saturday, December 18, 2010
Sunshine Garden
Sammy is on the bottom left, he was a little lamb in the Christmas Story
Excited!!!
Singing, Sammy is in the top left of the picture
Sammy had a little Christmas program at his preschool! He has been so excited about it, and has been singing the songs, and telling me who he wants there, and asking me if I would be proud etc etc....So so cute! He got all dressed up and got to wear a tie and was just so sweet! The pictures are TERRIBLE, but the musical itself was so so sweet. The children sang three songs and then they should a little DVD presentation set to music. Those are the more blurry pictures you see. Sammy was a little sheep in the Christmas Story:-)
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.
Wednesday, December 15, 2010
Sophia's first haircut
I took little Miss Sophia in for her first hair cut today! She was very nervous about it and kept saying "Mommy I want you" but she sat there and stayed still. It came out so so cute! I love it. She smiles so much when she sees herself in the mirror.
Tuesday, December 14, 2010
Surgery Date and chest pain?!?!?
Yesterday I heard from the ENT's office that Sam's surgery will be January 3rd. It feels like it is forever far away. I am praying that Sam doesn't have many apneic spells between now and then. I brought my sister and nephew to the doctors office yesterday for my nephews appointment. While there the doctor (also Sam's doc) asked how he was and said I can tell you are not sleeping. Did I look THAT BAD??? Apparently! Anyways I mentioned how he was coughing more, and she said she wanted me to bring him in yesterday. So I brought him in, she said he had some gross looking fluid in his right ear, but that it wasn't infected. When they checked his blood pressure, it was 132/80! It was this high when we had IVIG last too!! Not sure what this is about. She also started him on antibiotics for another sinus infection! So we started them yesterday. I am praying that it helps. I all but BEGGED her to change the settings on his apnea monitor, and I am praising God that she did! She made me promise that I would use it all the time now. So for now we will go back to using it always, and praying that the apnea doesn't get too much worse.
Today he woke up and was complaining of chest pain! It really scared me. OUr primary was off today, but I called the office and spoke with a nurse. She essentially said to wait 48hrs to see if the antibiotics helped with the chest pain! I wasn't loving that answer. So I texted his doctor:-) I know totally terrible that I did that, but I was really anxious. So she had me bring him in to the actual hospital and checked his BP, and also saw her. His BP was 116/54 today, much better!!! But the chest pain just seems to be his reflux acting up due to the antibiotic. Thank goodness!!! I guess I can add this to his list of weird stuff he does, zithromax gives him chest pain.
We FINALLY have snow on the ground! I can't believe living in Massachusetts that we haven't had it sooner. But it is so pretty.
Today he woke up and was complaining of chest pain! It really scared me. OUr primary was off today, but I called the office and spoke with a nurse. She essentially said to wait 48hrs to see if the antibiotics helped with the chest pain! I wasn't loving that answer. So I texted his doctor:-) I know totally terrible that I did that, but I was really anxious. So she had me bring him in to the actual hospital and checked his BP, and also saw her. His BP was 116/54 today, much better!!! But the chest pain just seems to be his reflux acting up due to the antibiotic. Thank goodness!!! I guess I can add this to his list of weird stuff he does, zithromax gives him chest pain.
We FINALLY have snow on the ground! I can't believe living in Massachusetts that we haven't had it sooner. But it is so pretty.
Sunday, December 12, 2010
Where's the Line to See Jesus?
Today while I was at church our Pastor played an amazing song that I have never heard before. If you go to Becky Kelly's website www.wheresthelinetoseejesus.com you can read the story about how this song came to be. It is inspiring to me. They have tried sending this song to Nashville twice, but it got NO RESPONSE! So they then went to YouTube and played the song there, the first day they had more than 3,000 hits! And it is steadily becoming more popular. My prayer is that this song inspires you as it inspires me. It is so sad that the Christmas season has lost it's true meaning to so many. I am so thankful that I was raised in a home where Jesus was the reason for the season, and that my children are being raised to know the truth about Christmas and how it has NOTHING to do with Santa!! May you be blessed by Jesus' love this season! Jesus is truly the reason for the season!!!
Where is the line to see Jesus?
Where is the line to see Jesus?
Saturday, December 11, 2010
Gingerbread House
We made our first gingerbread house as a family. The kids had a blast. Sophia didn't really understand the point about actually decorating the house and just wanted to eat the frosting and the candy. Sam was very interested in building hte house but didn't want to wait to let the frosting dry before he decorated it. He had a lot of fun.
He seems to be doing ok. Although today he is seeming to be a little more congested and now has an occasional cough. Praying that this doesn't turn into anything with him. Now with knowing how much he struggles on a "good night" of sleep it is nerve racking to think about what is going on when he is ill.
Rejoicing in this:
Matthew 1:21
She will give birth to a son, and you are to give him the name Jesus,[f] because he will save his people from their sins.”
He seems to be doing ok. Although today he is seeming to be a little more congested and now has an occasional cough. Praying that this doesn't turn into anything with him. Now with knowing how much he struggles on a "good night" of sleep it is nerve racking to think about what is going on when he is ill.
Rejoicing in this:
Matthew 1:21
She will give birth to a son, and you are to give him the name Jesus,[f] because he will save his people from their sins.”
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:-)
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