Friday, April 30, 2010

More than Conquerors

"...in all these things we are more conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:37-39
Today Sammy had more blood:-( After speaking with his GI doctor down at MassGeneral it was decided that they would not do the angioplasty fluoroscopy (however you spell it) At least not yet... For now as long as he does ok through the weekend, we will go in on monday morning and have a CT scan of his belly, the results of the CT will then determine whether they will be doing the other test. We then will have a few appointments on tuesday as well.
So I am reminded of God's strength that we are more than conquerors and that Sammy is in HIS HANDS always!!! It is going to be ok, it is scary certainly, but there isn't reason to fear because God is with Sam all the way. We are going to go out and enjoy this amazing weekend that God is giving to us!!!! And I hope you do too:-)

Playground fun









Goodness we have had some busy days this week. We had a great playdate with our friends today and while there Sammy said he had to go pee and had a large bloody BM. In discussing this with the GI doctor down at MGH, we devised a plan on what to do with Sam. I am feeling fairly comfortable with this plan although obviously I would much rather not have to have a plan for him bleeding, and to have this problem resolved.
Keegan made the trip all the way out here to join us for our playground. Sam was super excited to see Keegan, and almost exclusively played with him prior to even acknowledging anyone else.

Thursday, April 29, 2010

Mass General GI

We follow up on tuesday at MassGeneral with the Coordinated Care Clinic and GI. I actually spoke with Sam's GI doctor today. He was so kind and really seems to want to get to the bottom of Sam's bleeding (not only the location but the cause) as soon as he possibly can. His plan is some angiogram fluoroscopy study that would use a dye to be able to visualize any leaking of blood. He wasn't super specific on the phone with me since I was at work, but you know me I come home and google it and I am now wondering if this is actually what he is meaning. It makes sense to me what he is thinking about doing, but I didn't get the impression that it was a big deal when I was speaking with him and what I have found has been more significantly more invasive than I was thinking. But below is an excerpt that I found from www.webmd.com
"An angiogram is an X-ray test that uses a special dye and camera (fluoroscopy) to take pictures of the blood flow in an artery (such as the aorta) or a vein (such as the vena cava). An angiogram can be used to look at the arteries or veins in the head, arms, legs, chest, back, or belly.

Common angiograms can look at the arteries near the heart (coronary angiogram), lungs (pulmonary angiogram), brain (cerebral angiogram), head and neck (carotid angiogram), legs or arms (peripheral), and the aorta (aortogram).

During an angiogram, a thin tube called a catheter is placed into a blood vessel in the groin (femoral artery or vein) or just above the elbow (brachial artery or vein). See a picture of catheter placement in the femoral vein . The catheter is guided to the area to be studied. Then an iodine dye (contrast material) is injected into the vessel to make the area show clearly on the X-ray pictures. This method is known as conventional or catheter angiogram. The angiogram pictures can be made into regular X-ray films or stored as digital pictures in a computer.

An angiogram can find a bulge in a blood vessel (aneurysm). It can also show narrowing or a blockage in a blood vessel that affects blood flow. An angiogram can show if coronary artery disease is present and how bad it is.

A magnetic resonance angiogram (MRA) or computed tomography angiogram (CTA) may be an option instead of an angiogram. Each of these tests is less invasive than a standard angiogram. Some MRA tests and all CTA tests require an injection of dye. A CTA also involves radiation exposure." from WebMD

I really feel like this doctor is really motivated to get to the bottom of this bleeding, and isn't wanting to just sit aside and continue to let Sammy continue to suffer. I am starting to feel like I should switch all of Sam's care to MGH, except for his immunologist. But that is concerning as I really want all of his care in one place. Anyone out there have any recommendations about this? Is it worth having care at two different facilities?

Tomorrow we are having a playdate with Keegan!!!

Wednesday, April 28, 2010

Love for a very special boy...

We had the wonderful pleasure of spending a few more minutes with Auntie TeeTee and Uncle Danny again today. It feels like they have been gone forever and yet it was like they had never left. Sam was all over TeeTee and had a wonderful time playing with her, Sophia warmed up right away today.
Auntie TeeTee always called Sam "Special Sammy". She wrote this for him
SAM I AM
"Special Sammy"

I AM: A miracle sent from God Above
I AM: A child that Jesus loves
I AM: A "special" boy that has brought his family so much joy
I AM: a boy that says his prayers and knows that Jesus is always there
I AM: a boy named Samuel who Jesus will heal
I am a son who knows Jesus is God's Son and is number one.
Love, Auntie Tee Tee

After reading this and pondering it, the one thing that sticks out the most is "I am a boy named Samuel who Jesus will heal." And so hear I am, after having a discussion with Dr V today, after having a discussion with the nurses at Mass General today, and after talking with a couple of friends, about my frustration with the lack of answers, the anxiety and fears that I have been living with and realizing that I do really just have to surrender all of this to the God I love and serve, and realize that HE truly is in control, and that He has Sam in His hands all the time.
After talking with Dr V and discussing the respiratory stuff, she seems to be swaying the same way as Dr Baxi. I repetively told her that that terrifies me, and she said she understood, and that she would be adament that if they did decide to do that that they would keep him for a week in a half or so to get past that 5-7day most typical bleeding zone. But I am just praying that all of this anxiety is over nothing and it will be nothing that we have to ever consider again.

Tuesday, April 27, 2010

FRUSTRATION!!!!!


I am so so annoyed, overwhelmed and frustrated. Sammy has been doing so well the last few months! We haven't had any blood or anything concerning with his blood since the end of january. We have stopped doing the benadryl, and I was just getting to the point where I was feeling comfortable with him and not overly anxious thinking that something bad is about to happen. I had gotten to the point where I was really thinking that the benadryl was the cause and as long as we avoided it then we wouldn't have any bleeding. Well that was completely blown out of the water today! The first stool just had a little bit of streaking, but the two most recent have each consecutively had more blood:-( I am so upset and frustrated. I was really thinking that we were done with this. And here we are with blood again.
WE had IVIG today and that went well, although his vital signs were all over the place. He had high blood pressure, and low blood pressure, he had a low temp and a fever. Weird!!! His GI doctor essentially is saying lets just wait this out and see what happens. He wants him to have blood work tomorrow if he has any more bloody stools. He has gained a couple of ounces though, praise God!!! He is now 32lb 5oz:-)
So we are both worn out and exhausted, and I am just praying that God heals this little tiny boy of mine, and that there will be no more fevers, no more bleeding, and no more pain.

Monday, April 26, 2010

Guess who's back!?!?!?


trying to get a nice photo just doesn't work with the kids these days


Ring around the rosy, ring around the rosy

Ashes, ashes we all fall down


Sophia and Uncle Danny (I know, not the best clarity but it is better than nothing)

WE had the BEST time today visiting with our long lost Auntie TeeTee and Uncle Danny. They moved away in the fall of 2008 and haven't been back since. Prior to their departure Auntie TeeTee and NeeNee (Terry's mom) were constantly going 100% out of their way to help us in whatever way they possibly could. They absolutely enjoyed getting down and playing with the kids and the kids thoroughly enjoyed them. I have missed my friendship with Terri immensely. It was almost like they had never left, Sam just jumped right in where they had left off. Sophia was a little unsure initially (she was like 8 or 9 months old when they left) but Terri quickly won her over.
Unfortunately their visit will be short, but we are so so thankful to spend any time that we possibly can with them. WE love you so much Auntie TeeTee and Uncle Danny. And we certainly wouldn't mind if you moved back, HINT HINT!!!!
PS: We miss you so much too NeeNee and we pray for you often

Sunday, April 25, 2010

Davion and Mia's birthday party












Wow it has been a crazy weekend! Yesterday was Chantal and Andrew's wedding and today was Davion and Mia's birthday party: Luau style!!! Sam and Sophia absolutely love spending time with their cousins, and were so thrilled to be here. They had little grass skirts for the girls and hats for the boys. It is so hard to believe how fast Davion is growing up, it seems like just yesterday I was away at college and so sad that I was missing this beautiful little baby growing up. And here we are eight years later, and I still feel like he is growing up so fast. We love you so much Davion and pray that you have a fabulous next year.
This party was bittersweet as my sister, her husband and their kids are planning to move down south to florida this summer. So this unfortunately will be our last time that we are able to spend Davion's birthday with him for a while:-( Denise and Ron we wish you the best and pray that God opens new doors of opportunity for you while you are there

Chantal's wedding


The beautiful bride and her handsome groom


My best friend in the world. We have been best friends since we were 13years old. I was so honored to be her Matron of Honor



All the brides' maids



Matt and I. It was so nice to have time to be a couple, and to get dressed up and have fun without the kiddos

This past saturday was my best friend's wedding. It was such a wonderful time, I was stressed about being away from the kids but it was a good time. We had a lot of wonderful people that helped watched the kids over the few days of festivities, and the kids loved all the different environments to play in. And some dear family friends took the kids overnight saturday!!! Thanks Uncle Jody and Auntie Paula. The kids had a great time, I didn't worry (too much) and Uncle Jody now knows he is done having kids:-) We didn't even get home until about 2am, and then it took FOREVER for me to get all the bobbiepins out of my hair to be able to wash it and go to bed. And then we SLEPT IN!!! It is such a different feeling to get up so late, but it was wonderful...

Thursday, April 22, 2010

Playground fun


If you look at the picture below this you can see Sophia peeking through this same window!!! This is one of Sammy's favorite playgrounds because everything is so high.


See he LOVES all of this climbing stuff, but it totally gives me a heartattack. He just flies up these pieces of climbing aparatus and it scares me to death. It would be one thing if we didn't have a bleeding disorder, but since we do it is a whole new ball game, but I don't don't want to keep him secluded from real life



Monday, April 19, 2010

You need to Shave!!!!

Sophia wanted to "shave" Sam so we got out the play foam soap and they had a blast


Drum roll please.....



FINALLY, FINALLY, FINALLY I heard from GI!!! I spoke with the GI doctor's nurse and essentially she said that the capsule endoscopy was NORMAL!!!! PRaise God! So essentially what this means is that God has healed him, or that they still just don't have a clue where this bleeding is coming from. The doctors over at MGH talked about a possible AVM but I am not sure what would be the way to diagnose that. He hasn't had any episodes of bleeding lately, so I am trusting God that this part of our lives may be over. The question still remains though does he have an actual bleeding disorder or is the bleeding caused from medication or something?
Last week when we came in to see the immunologist we also got to see Sam's little IVIG buddy Keegan who was in the hospital. Sam was so cute with Keegan, and very concerned. And Keegan treats Sammy like a little brother and is so generous and protective of him. It amazes me that these kids who go through so much medical stuff are so kind and grown up and compassionate. Sam was so comfortable at Children's he just climbed right up next to Keegan, and ate Keegan's supper with him:-) Fast friends thanks to being immunodeficient...

Thursday, April 15, 2010

SPRING!!!!

Had a fabulous walk today with my friends. I am hoping to really work on my own activity level and get into shape. I have no excuses, I have been blessed with a double jogging stroller, we live in a good neighborhood for getting out and now I just need to be motivated. But that is where these wonderful ladies come in. We did a 3mile walk today and it went fairly quickly, even though my two kiddos (and ONLY mine) were a little irritable. But we survived, and weather permitting we will do it again tomorrow:-) Pray for me that I can stay motivated and do this:-)

Tuesday, April 13, 2010

Our weekend away!!!

Matt and I went away for the weekend and had a wonderful time. It was an eye opening experience, as I realized that so much of my interaction has been focused on the kids. This has been something that happened so easily that I didn't even realize it. The weekend that we did is through an organization called FamilyLife and the program is called "A Weekend to Remember". We learned a lot about each other and ourselves. Check out their website: www.familylife.com
The kids stayed at my aunt and uncles and did very well. The first night Sam fell out of bed, but went right back to sleep. Sophia woke up and ended up in their bed with them. The second night both kids woke up a little I guess, and then they both were in their bed:-) But the kids had so much fun, as they took them to the park, to see the ducks, swimming etc. We are so blessed by their willingness to do this for us. My poor aunt when I spoke with her saturday morning, said that she was exhausted. And they didn't even get them until late friday afternoon:-) It is exhausting though. AND TO TOP IT OFF.... THEY SAID THAT THEY WOULD TAKE THEM AGAIN IF WE WOULD LIKE!!!!! Thank you Auntie Irene and Uncle Bud:-)
I called GI again yesterday and still have been unable to get the results of Sam's capsule study. I am trying to not get frustrated and be inpatient but I am really starting to get annoyed. They had told me that it would take about two weeks when he had it done. Thursday of this week will mark FIVE WEEKS and we still haven't heard anything at all. So please pray that we will get these results quickly.
In other news yesterday Sam had his appointment with his immunologist. All went well. His IgG levels are in a good range, his liver tests are all normal (a side affect of the IVIG can cause some elevation), he has gained some weight (32lb 10oz) and is now 39inches tall. I mentioned per DR V's request about his recent sinus infections and respiratory symptoms since the fall. He has started him on a new medication, called Flonase, to see if that will help the inflammation in his nose and sinuses. He also noticed that his tonsils are very large. He said that if the nasal congestion, and respiratory symptoms don't improve, it might be something in his adenoids and he would then want to do an x-ray to see what they are looking like. So I am praying that this flonase helps to decrease all of this irritation. He actually did allergy testing while we were there, for all the environmental allergies and everything came back negative. Praise God!!!
Off to the playground today, and praying that we hear from GI! Have a blessed day:-)

Thursday, April 8, 2010

STILL waiting!!!!

Officially we should have had the results from Sam's capsule endoscopy last thursday or friday. Yet this week NOONE has a clue why they are not available yet. And of course my mind keeps wandering to the what if's of what was visible on the camera, and that isn't a comforting place to be. But prayefully week four will be the week that we get answers.
My dad had his quadruple bypass on tuesday and did really well initially. I am so thankful that God brought him through. But since yesterday he has had some struggles, mostly with pain control, and them not being able to control his pain. THere have also been some blood sugar issues, and some issues with tacyhcardia and with atrial Fib. So please please continue to pray for him, I know that God is with him through all of this. ANd please also continue to pray for my mom, she actually fell down on the cement steps at the hospital and hurt her ankle and knee pretty badly, so please pray for her.
In other EXCITING news....Matt and I are going away this weekend!!! I am so looking forward to getting away and having our focus just be on each other. It has been so easy to get caught up in the day to day life, or the problems that are surrounding us, but this weekend it will be all about loving each other the way God wants us to! It is going to be a blast.
I am a little anxious to leave the kids, but am so thankful that my aunt and uncle are willing/desiring to take them. It is such a blessing to have them together and with someone they love and who loves them. It is also comforting to know that they will be very close to Matt and I so that if there was anything wrong that we could be there super quick. Please pray for my aunt and uncle that the kids don't run the ragged, and that the Lord will bless them deeply!!!
Thanks and have a wonderful weekend:-)

Monday, April 5, 2010

Easter
















This year the thought of what Christ did for me is just so overwhelming, I am reminded that I don't deserve His love and forgiveness, but that He CHOSE to give it to me. And I am ever so grateful.
This weekend was spent spending lots of time with family and friends. Between decorating easter eggs, church and visiting Dad at the hospital it has been quite a busy few days. But they have been beautiful.