More prayer requests

Goodness, it seems as though when God is on the move that the Devil is out to mess with us. Sammy woke up this morning with blood in his stools AGAIN!!!!:-( It is so hard to not get frustrated with this situation. We are praying and believing that this is nothing and that there will be no further bleeding this weekend. Please lift him in your prayers. Also Sammy's little friend Keegan (I have written a lot about him on the blog, see the label list, was on the way to the emergency room earlier today with a high fever and breathing difficulties. Keegan has been on antibiotics and is still getting worse. Please pray for complete healing for his little body too.
Thank you for praying for little Josiah, he is doing much better and has gone home today. We had Josiah's twin brother for the day, and him and Sammy sure did make a mess of our playroom.:-) But they had a wonderful time together, and I am always amazed listening to these little guys talking about God, and Jesus. Some of the conversation today "Well Josiah is in the hospital, but God is telling the doctors what to do to make him better." And then after Ben left, Sammy said a little prayer thanking God for his friend:-) LOVE IT!!!!
We are so excited to be going to our church tonight for something called "Family Fall Fest: Fall Voyage." It is a wonderful time of games and candy for the kiddos, all the while being surrounded by God's love. What can be better than that? NOTHING!!!



Job 16:20 (New International Version)
My intercessor is my friend as my eyes pour out tears to God;

More bleeding, more sickness, and more questions

Goodness, it feels like I have too much on my plate and am feeling so incredibly overwhelmed. Sammy started having explosive bloody watery diarrhea today, as well as his gums were bleeding. This is something we have NEVER dealt with before so it has been totally upsetting and scary to me. In the past there has been some bleeding if I brushed his teeth too hard, but today the bleeding was completely unrelated to anything.
I called his primary and told her about the diarrhea/bleeding thinking that she would possibly watn to stop the antibiotic. But at this point she wanted me to call the hematologist and GI. Both of these docs called me back with differing opinions: the hematologist believes that the increased bleeding is related to him being on zyrtec even though I was told that this would be fine for him to be on.:-( So she said to take him off it, and to wait a couple days to see if it gets better. If things get really bad with bleeding to bring him to the local ER. The GI doctor is unsure of what to do right now. I am supposed to call in a few days if he is still bleeding.
So I am not sure where this leaves us with Sam. Apparently we are going to wait this out for a few days as long as he is stable. And pray that all of this resolves.
We are also in the middle of planning/preparing for my grandmother's funeral on wednesday. Please keep the family in your prayers as there are many people traveling from all over. Please pray that Sammy is doing well enough to be ok for the funeral as well.

Bleeding again 8-(

It has been a busy few days, this past week we had VBS at our church, and had over 200 kids come! It was so amazing to see God working in the lives of young children. Sammy was actually old enough to go this year and he had a wonderful time when he felt healthy enough to go.
Unfortunately this week we have started to see Sam bleeding again. He has had many bloody noses this week, and on friday I was getting concerned so I called his hematologist. She wanted us seen by his primary, so we saw her, who also wanted to check his stools for blood. So now we are having bloody noses and bloody stools. The bleeding disorder must be rearing it's ugle head at us this week.
We head into Boston monday and tuesday for three different doctors appointments. I am praying that someone can find an answer to this, or that our Lord will heal him.
Sam said the greatest thing the other day, he said "Mommy people who don't ask Jesus into their hearts are so so silly!" I am so thankful that Jesus is so real to him and that Sam is already building his relationship with Him. I can't wait to see what God has planned for this amazing boy of mine. It is amazing how God reminds me that He is still here even through the midst of all the worries when something is going on with Sam
Have a blessed day!!!

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.

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.

GI bleed:-(

Sam's back in the hospital as I write this:-( Yesterday he had a large diarrhea stool at church, then came home and Grandma and Papa were watching him when he had a large stool in his pull-up which was red and kind of like jello. I called Children's and they had us come to the local ER to make sure he was stable. I came and waited FOREVER in the ER, and when they finally saw us they found that his blood count had dropped about six points:-( So here we are waiting to see what his blood work will show this AM, and to see if we will transfer to Children's as inpatient or if we will be discharged and then go down outpt. While we were waiting in the ER he spiked a temp to 101.9, and this is 3 days post IVIG. Please continue to pray for him, that God will heal him and give the doctors wisdom

So what we have learned...

is essentially nothing! The GI doc gave up his lunch break to see us early so that we wouldn' be waiting all day. So as soon as Sam was done with his IVIG we went right over and saw Dr R. He was so nice and kind to Sam. I am so thankful for that and for his willingness to see us today. He essentially wanted to make sure there were no tears or anything in Sam's bottom that could be causing the bleeding. There weren't. He said he could see little flecks of blood everywhere though. He truly believes that the problem is hematology related, and hematology just doesn't know. I spoke with his hematologist, and she essentially said that there is a strong possibility that it is a platelet problem, but as of right now they don't have the exact test to determine exactly what it is. So she is essentially saying that there isn't really anything they can do until he is in a crisis and then they could treat him. Apparently there is a test being developed to test more specific platelet orpboleplatelet problems, and Sam's blood will be tested when that becomes unsolvable. We follow up with her in two weeks, she is repeating a lot of the blood work, to see if anything is better worse or the same.

Update

Here we go again! Please excuse this post if you don't want to hear complaining. Tonight I am just totally struggling, feeling completely overwhelmed and alone. I mean in my head I KNOW that I am not alone, but tonight in my heart I am feeling that way.
I spoke with the hematologist, who essentially said, that since it is not a huge amount of bleeding there isn't anything they can do until it is a crisis. So essentially knowing that he has something wrong with his platelets, just allows me to have something else to be worried/scared about. They essentially can't treat it until he is in crisis. Pretty scary:-(
The GI nurse called this afternoon and the GI doc is going to see him tomorrow after his IVIG. I am thrilled with the fact that they are getting him right in but petrified at what they are going to want to do about this bleeding. I mean do I let them do the scope again if they want to? What if he starts hemorrhaging again and they can't stop it? What if they do the procedure for the third time and still can't determine the exact cause of the bleeding? What if it is a platelet problem and there is nothing GI can do to fix it? What if it isn't???
Please please pray...

When d6es IT end?????

So SAM has blood in his stool again:-( Not sure what is going to happen next....waiting to hear from tghe doctor

Popcorn kernels + nose= Not a good combo

I guess it was bound to happen, my silly boy stuck something up his nose. I can't even believe it was popcorn. Crazy kid! He all of a sudden started saying "mommy help it won't come out!" I had no idea what he was talking about! So of course I look up there, and low and behold what do I see?!?!? A popcorn kernel! Thankfully he was able to blow it out with a little prodding from me and we didn't have any issues. But I totally can see how this could be an ER situation. I was getting really anxious as I was trying to get it out. Thankfully he is old enough to know how to blow, and he has big nostrils. But I still can't believe it!!!
He also had a bloody stool today:-( Has had increased abdominal pain and now has watery diarrhea. Poor guy. Of course Dr V is on vacation until wednesday so hopefully nothing crazy will happen tomorrow. But I am sure I will touch base with her at least by wednesday....

Sam the man

An update on the health front (we have been like a normal family for a few days) Sam has had increased bloody stools over the last few days and we are not sure exactly why. At this point we are just waiting it out. His GI doctors are not overly concerned as his blood work is remaining stable as of this moment. If they did start to be worrisome then they would do more, but at this point, we will wait for his visit with Dr V. At which time she is going to do a work up for a bleeding disorder to make sure that there is nothing going on in that aspect. We are planning to go to Florida on monday, so please pray that he stays well. We are going to switch the specific product of his IVIG from GammaGuard to GammaNex. His immunologist is hoping that we can stop these reactions that he is having and have these treatments not make him miserable for days after. We at this point are going to stick with the every three week schedule, which is really daunting to me. To think I have to get him transfused so often, and the IV starts (three times this last visit!) and the reactions! Ugghhh, but God knows and He will get us through this too!!!

Swine Flu

\4Well we are home! Praising God that we are here. We essentially are still in limbo as we wait to see what the doctors next course of action will be. His GI is consulting others as he isn't quite sure where to go from here. He had a large amount of blood on monday when we were home but yesterday and today have been much less. WE are praying that he is healed and that we will have no further occurances.
We are now debating the swine flu vaccine for him. In light of recent events and his "untypical" reactions to things I am very anxious about it, although I also realize that getting the swine flu would be much worse for him. So we are in limbo about getting it for him. If this had been two weeks ago we would have done it no problem but now I am anxious about it. In any case Sophia will be getting it on friday and we will see about Sammy. Has anyone given it to their little ones yet?

Scary

Phew well we are still at Children's Hospital after what was an unexpected complication. While doing the colonoscopy/endoscopy yesterday Sam started to bleed from it and developed a large hematoma (like a blood blister) in his descending colon. They wanted to watch him and were wondering if he possibly has some type of clotting disorder. As of now the clotting studies have come out normal. However they had decided to not let him eat anything until today just for in case he started to bleed again and they needed to go to the operating room. They finally allowed him to have some clear liquids and he had a few bites and then had severe pain and then he said he had to go poop and he pooped a significant amount of bright red blood. So they don't know what is going on exactly.
UPDATE: They let him have a popsicle!!! He is happy as can be now. Auntie Chantal and Auntie Bethany are hanging out playing with us. Playing Chutes and Ladders and Indiana Jones, playing with Curious George, and watching movies. I am so blessed to have these wonderful ladies in my life. Thanks Girls!!!

A new plan

Matt noticed last night after Sam had a bowel movement that there was blood. We saw his primary who noted him to have pain in his left lower quadrant, and they tested the stool and it tested positive for blood. So the plan is that we will be admitted to Children's tomorrow and they will put him under general anesthesia and do a colonoscopy and endoscopy with several biopsies. We will not know how long we will be there until after the procedure. If the procedure goes well and things look ok then we will come home tomorrow evening, but if they don't we will be staying for a few days. Please pray for him and for his doctors for their wisdom to do what is best for Sam.

Spending time with Meme'

IVIG here we come????

Well let's see, we are still pooping blood, running fevers again, and generally pretty irritable. He has some good moments when he is his normal self, but it has been a rough weeek. His primary thinks we should definitely go back to the IVIG, which I was like " Oh yeah another year would be great and then we can get him through the winter and see how he does next year" To which she replied that this probably wouldn't be the case, that we would be looking at several years before we trialed him off again. Totally not what I wanted to hear, but I understand it.
I took him to the beack with my brother this week just to try and do something fun. We were there about an hour before he said that he was too sick and wanted to go home. Sophia loved it! And she just rolled around in the sand and had a blast. Sam asked to stop for ice cream on the way home, which we did. He took a few licks and then he told me that he was too sick to eat it:-(

I want to get off this crazy ride

Phew! WE bought and sold houses last friday and moved in friday as well. Sam started complaining on thursday that his belly hurt but I thought he was just stressed out from all of the stress of moving/packing etc. He continued to complain and also continued to eat poorly. Since he is potty trained I hadn't been seeing what was coming out of him, as he likes to flush the potty while he is sitting on it (silly kid!!!) WEll anyways sunday he started to be unable to hold his stool so I put a pull up on him. It was at that point on sunday that I noticed that he had bright red blood in his stool!!! They tested it and obviously it was blood. WE spoke with his GI doctor on monday and she wanted him seen by his primary and for her to do some specific blood and stool tests and depending on what they showed would determine the next course of action. We saw his primary on wednesday and she was going to call the GI doctor after we left, as Sam was very tender when she pressed on his belly (and he never has been before) She believes he needs an endoscopy and a colonoscopy to see where the bleeding is coming from. So please say some prayers as we wait to determine what is going to happen next

It has continued to be a challenging weekend. Sophia has continued to exhibit some strange symptoms with very odd and concerning lab work. She may also be bleeding when she stools. We will check that tomorrow. Our wonderful doctor called a few times over the weekend to check on our little princess. What a blessing she is.
I have come to the realization over this weekend (like a lightbulb moment:-)!!) that Sammy has been healthy all week even with Sophia being ill. All of of sudden today he is acting a little off, but I am praying that it is a fluke. It has always been as soon as someone else gets sick that Sam gets sick. Praising God that this week he has remained healthy, and praying that tomorrow when he wakes up he is still healthy.
And another tremendous blessing, our mortgage broker kind of screwed up with our paperwork, so we weren't going to be able to close on the new house on friday which means that we would technically not have a place to live after friday (my mom was going to let us stay if we needed). But thankfully the man who owns the house currently is going to allow us to stay there until we close!!! Thank you God!!!
Here's a pic of our new house and the current house. So long itty bitty house, and hello big house:-) We are so blessed!

Something is up:-(

I worked last night so I didn't spend a ton of time with Sam today, but apparently he is complaining that his stomach is hurting again. His stools today looked suspicously bloody too:-( Matt said he was like kneading his stomach and saying "Belly hurt." Sometimes I am just so frustrated. He deserves to feel good and happy and have no pain. Poor little guy. He had the hiccups today, which neither of us really remember him having a lot before. I wonder if that could be causing the pain, but that doesn't explain the blood. Please pray for him

6months well child check

Wow my baby girl is six months already. I can't believe it. What a wonderful journey we are travelling with her. I am so blessed and so thankful for her. We had her appt today and of course she got the three shots. The poor little thing screamed this terrible high pitched cry while they stuck her and then as soon as I picked her up she stopped. The nurses were like "wow she's good." I made the mistake of bringing Sammy with me today and he saw her get the shots. It was very upsetting to him, and he kept saying "sister get boo boo too." THat is one of the first things he told Matt about when Matt got home.
Anyways my little tiny peanut is 12lb 11oz and is 25inches long. She is in the fourth percentile. I guess we just make them little. Although at the same age Sam was 15lb 11oz. The doctor was a little concerned with her size and will keep an eye on it but other than that she was pleased with everything. She was happy to see how much trunk control Sophia has and how alert she was. She said we can wait another month to really start the food so that is relief to me. She felt bad that I was pushing the food because of her recommendation, and told me several times that it is okay if she is small as long as she continues to grow. So she said to just try it when I feel like it.
I also used this opportunity to talk about Sam. I brought a sample of this mornings stool with us and it had lots of blood in it:-( I told her what has been happening the last few days. She is actually going to make a call to UMass hospital to have someone totally new, totally different review his case to see if they get any new ideas. She will let me know tomorrow or thursday when we need to go there. In the mean time please continue to keep Sam in your prayers.