Sunday, February 27, 2011

Sam is sick:-(

His doctor made a comment about a week ago about how long it had been since he had had an upper respiratory infection (the beginning of january), and we were just so thrilled that he has been doing so well. He had his IVIG last week so even though he was starting to be sniffley I was praying that the IVIG would fight it off. But it would appear that it hasn't. We've got a very congested little guy on our hands. The mucous is thick and green but I am praying we can get by without antibiotics.
Looking forward to a sunday of praise:-)

Psalm 136:2 Give thanks to the God of gods. His love endures forever

Saturday, February 26, 2011

Weekend is HERE!

Goodness it feels like it was an incredibly long week. I am thankful for the weekend and to not have too many things we have to do. Kids are doing well although Sam is pretty fussy, and I always start wondering if he is coming down with something when he starts acting this way. He had IVIG this week so hopefully this is just crabby kid week.
WE had the yuckiest storm yesterday. It snowed all morning then switched over to rain then back to snow. It was a big slushy gross mess. I am so ready for the winter to be over and some warm sunshine and green grass....
Hope you have a fabulous weekend!

Thursday, February 24, 2011

Cousins:-)

We got to have Darius over for the night last night. Sam absolutely loves him. It is so awesome to see them together. Both Sam and Sophia have been saying things like "I have a new baby brother and sister." to which everyone is completely suprised/confused. But they have claimed Darius and Danay as their own siblings. It is awesome to see how compassionate and protective Sam is of babies. When Sophia was born he was only 20months old so he didn't really understand "the big brother role."

Magic Wings

Last weekend Sophia and I went to "Magic Wings", a butterfly place in western massachusetts. It was amazing. There were hundreds and hundreds of butterflies, many different colors, some exotic birds. It was awesome. Sophia and I had a wonderful time, while Matt and Sam went to a Monster Truck show.

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.

Sunday, February 20, 2011

IVIG tonight

We are going to attempt IVIG tonight at our local hospital. We have had such bad luck with IV's lately, so I am praying that it goes well. I scheduled it when one of our favorite nurses (and a HUGE talent with IV starts) is on. He is super excited to go see "Miss Chris."
We have had a very busy weekend. Matt and Sam went to see a Monster Truck show yesterday, which Sam raves about, and Sophia and I went to Magic Wings which is this amazing butterfly place with hundreds of butterflies. They fly around and land on you and everything. IT is awesome. Soph seemed fine yesterday AM when we were getting ready to leave, but seemed to feel intermittentely cruddy yesterday, and that has continued to carry over to today. Praying that my sweet girl feels better soon
I will get around to posting pics of our adventures soon....for now I've got bags to pack, supper to make for Soph and Daddy, and some snuggling with my babies. Have a blessed day!!!

2 Corinthians 7:16 I am glad I can have complete confidence in you.

Friday, February 18, 2011

I have a beautiful new niece!!!

I have a new niece that was born today! I am so excited, however I am so so disappointed that I didn't get to see her be born. I unfortunately didn't get the texts/phone call until this morning at six! So sad that I missed it. But oh is she precious! Seeing how my babies are always early and on the scrawny side it was so wonderful to snuggle this baby. I couldn't get over how wonderful she felt in my arms.:-) If only I could grow a baby like that!!
My sister got to the hospital around 1 in the morning and delivered her at 3:24am. She was 8lb11oz and 20inches long!!! A TON of silky black hair

Sick and snuggly

My babies are starting to feel a little better although still pretty wiped out. Sam started with diarrhea, but we are praying that it is resolved quickly. He and Matt are supposed to be going to see a Monster Truck show tomorrow, so I am praying that they are able to go.

Sick:-(

Yesterday was quite a long day. Miss Sophia was pukey and had high fevers that weren't coming down with medication. Sam also developed a fever but thankfully hasn't vomited. He seems to be feeling better today so I am praying that it is over for him. I vomited this morning but it was only once and I have eaten since so I am hoping it was just a little touch of it and now it is better. Sophia is still sick today although she has drank well this morning and hasn't vomited so prayerfully there will be no more vomiting at our house:-)

Thursday, February 17, 2011

Fevers and puking

The stomach bug has invaded our house. Please say a prayer for us that it leaves as quickly as it came!

Wednesday, February 16, 2011

Another great day:-)

Sam is having a wonderful week! I am so thankful to be here and on the other side of all of the surgery, complications and then the belly stuff. God has as usual (AS ALWAYS) brought us through and I am just so so thankful to be here. Sammy is eating fairly well, isn't complaining of pain and is acting perfectly healthy. Awww, smiling!!!!
We are doing so awesome this week. I am just in such a deep appreciation for God's provision for us. Sometimes I get so bogged down in the trials that I forget to be thankful for the blessings. And this week I am remembering:-) Sophia is such a darling and is so smart and animated, she is spunky and determined, loving and loves "snuggly time." What a wonderful feeling to snuggle your baby as they fall asleep, and then to just stare into their faces as they sleep so peacefully.
Matt and I again got to attend a bible study last night and it is great to have some adult time and also be studying and getting closer to God.

Psalm 107:1 OH give thanks to the Lord, for His steadfast love endures forever

Tuesday, February 15, 2011

Had my eval for PT yesterday. I was hurting just from the evaluation. But I already feel like this time is going to be the time that makes progress and makes things better. THey said that I have some immobility in between several of the vertebrae, and that that is leading to the muscle spasms. So the plan is to start working those verterbrae in order to stimulate the synovial fluid production to lubricate them. So prayerfully that will work.
Kids are doing well. Sammy is feeling well this week. He really enjoyed his Valentine's Day party and is looking forward to several playdates we have planned this week:-) Miss Sophia continues to be so stubborn about going pee on the potty. I am praying that she will just one day start doing it and never look back. We shall see.....

Sunday, February 13, 2011

A good weekend

We have had a good weekend. The kids and I had a fun playdate yesterday AM then we had Matt's cousin Joel and his girlfriend Kristen over for the evening. It was a great time. The kids ran Joel and especially Kristen ragged though.
Sam seems to be doing better stomach wise. He has complained intermittently throughout the weekend but nothing consistent and nothing that was too much discomfort for him. Praying that this week brings him even more relief. He has a Valentine's Day party at school tomorrow. He is so excited about it. And mean momma that I am we had a lot of good letter writing this weekend as I made him write all 20 of the kids in his class's names on their invitation:-) He did awesome:-)
Tomorrow I start my "intensive back rehabilitation." I am very curious as to what effect it will have. It was seemingly useless when I did PT before, but I sure would love to have this discomfort out of my life once and for all. We shall see.....

I can do all things through Christ who strengthens me Philipians 4:13

Thursday, February 10, 2011

ENT and GI

ENT appointment went really well! The doctor was pleased with how his throat looks and the tubes look great in his ears. They did do a hearing test, and his hearing is FINE!!!! Praise God! So that just means I have a kiddo who I need to retrain to like things quiet:-) He did say that he definitely wants to repeat the sleep study so we will see when that happens. The other interesting thing about this appointment was when we were talking about his tonsils. After the surgery he had stated that one of Sam's tonsils was green and he hadn't ever seen anything like that before. I questioned him about that today to get more information. He said that the particular bacteria that was growing on his tonsil is not one that is typically grown on humans, but because of his immune dysfunction that is why he grew that strange bacteria, but now that it is removed it won't be an issue.
He also really cried that his stomach hurt today after lunch:-( He actually didn't even stand up straight when we got out of the van and was walking hunched over. So I have another call into the GI doctor to see what they think we should do. It sure feels as though you get one situation resolved and then start on another:-(

Psalm 5:1 Give ear to my words, O LORD, consider my meditation.

Off to the doctors

We are off to see Sam's surgeon today. This is just a follow up to the surgeon, but I find myself a little anxious as I feel like his hearing has been affected by the surgery and therefore will be asking for a hearing test today. Praying that they can do one.
Tonight the kids are going with their grandparents for a little while and Matt and I are going out! I am so excited as it feels like we NEVER do anything together anymore. It is so hard to continue to strengthen our relationship when we are so pulled in so many different directions and don't often get to be just the two of us. I am definitely looking forward to tonight. And it is exciting because it is a surprise and I love surprises:-)

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.

It's back:-(

Sam has not complained of belly pain in four days but unfortunately yesterday he started complaining his belly was hurting again.:=( The first time he complained was not when he was eating, and then he complained a couple more times before supper and then a little while we were eating. Ugghhh so frustrating! I am hoping it was a fluke thing, this morning he is gaggy so I am not sure what is going on. He doesn't want to eat anything either but he did eat well last night.
They got to play outside a little yesterday with daddy which is always nice. They LOVE it, and hten I get to make supper without whiny kids, which I LOVE:-) My in-laws have agreed to watch the kiddos for us each tuesday for the next several weeks so Matt and I can go to a small group bible study. Last night was our first night and I was really happy we got to go. I am hoping and praying that we both can grow in our relationship with God and each other through this time. A special thank you to my Grandma and Grandpa for taking care of the rugrats for us.
Please pray for my sister Denise today. She is 34 wks pregnant with a little girl. Her pregnancy has been rather complicated and then yesterday they did an ultrasound that showed that the baby's heart wall is too thick, and that her kidneys and liver are enlarged. We don't know what any of this means yet, but we are just praying for God to heal this little one.

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

Sunday, February 6, 2011

Feeling so blessed:-)

Sammy had another wonderful day! He hasn't complained of belly pain since friday!!! Thank you Lord for your answered prayers! I am just so relieved and enjoying having my sweet little guy eat with us and not be in pain. He is so sweet and loving and I am so thankful to be his momma.
Sophia seems to be coming down with a cold. She just wants to snuggle, and this momma loves to snuggle her. I can't believe that in just over a month she will turn three!!! Where does the time go? She is such a joy, she is so spunky and fun loving, she is determined and wants to lend a helping hand always.
We had a wonderful church service today. We actually skyped with a missionary in Indonesia. It was really cool to hear firsthand what God is doing out on the mission field. We so often take for granted how easy we have it in the US, but to hear from someone that has taken the call and gone where God has led him it was eye opening.
We have had a good weekend. Matt went to the church yesterday to help shovel off the roof. We have SO SO SO MUCH snow around here! I can't wait for it to melt so we can see over it:-) The kiddos LOVE painting and so we had a messy painting adventure too:-)

I John 4:7 Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God.

Saturday, February 5, 2011

Better?!?

Sam didn't complain of belly pain ALL DAY today!!! I am so thankful! Praising God for His goodness. He has eaten well today and been active and running around like a typical kid. My smile couldn't be bigger:-)
We had a relatively low key day. Miss Sophia got up super early this morning so we got going early for our errands. We were supposed to be getting a rain/ice storm today (I thought it was early in the day so I wanted to get out and back home early) but it actually didn't start until this evening. I am praying that we can still go to church tomorrow.
Matt went to the church today and helped shovel off the roof! I would have been terrified to be up there, but thankfully there were 8 people brave enough to get up there and shovel it off. But then you know what my husband did?!?!?!?!? HE JUMPED OFF THE ROOF!!!! I guess it isn't that big of a deal since he sank in snow up to his armpits, but still!!!
Praising God for His amazing goodness and love today:-)

Love each other with genuine affection, and take delight in honoring each other. ~ Romans 12:10

Friday, February 4, 2011

Prevacid

We restarted the prevacid with Sammy yesterday. I am not sure how long it will take to work, but I am praying that it will be fast. He seems to be less irritable today, and hasn't complained of pain when he isn't eating, I guess we will see when we eat supper.
I went to work today for a few hours. It still is such a hard pill to swallow that I have been unable to work for so long, and still here I am not doing "my job" or "real" nurses work. But I am truly thankful that I am able to do something and that the hospital is accomidating my limitations. I got word today that the specialist I saw a couple weeks ago (who I thought was a complete wasn't of time) has recommended that I restart physical therapy, and that it is very agressive to retrain/strengthen those muscles around my back where the torn discs/bulging discs are. So they are sending me to a PT place that I guess back injuries are their whole focus. Praying that this gets everything back in place for me. That I can get back to baseline and get back to a normal life.

Psalm 90:17
May the favor of the Lord our God rest upon us; establish the work of our hands for us--yes, establish the work of our hands.

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.

Wednesday, February 2, 2011

Up to 24!!!

Uggh I am so tired of this ridiculous amount of snow! This storm alone could dump another 24inches on us. Not to mention another one coming this weekend! The snow is deep enough that the kids can't really walk in it. Matt snowblowed most of the yard into a big hill for the kids to slep on, and then he iced it down so they could go really fast. It is really


. He put a ladder in the side of it. Sophia was going down just on her belly. Sam was going down on the sled. Thanks Daddy! We will have to try to unbeary it today.
I spoke with Sam's GI doctor for a while yesterday. We are both fairly baffled with why he is having all this belly pain again:-( It all stems back to all those bloody noses a couple of weeks ago. But that blood should no longer be irritating his belly. We are going to start another reflux med, and we are praying that this will do the trick for him. Just have to wait for the health insurance to improve it, and the roads to be drivable:-)

Job 37:6:
For he saith to the snow, Be thou on the earth; likewise to the small rain, and to the great rain of his strength.