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;

Trombetta's Farm

Today Sammy and I went and celebrated Keegan's birthday at a wonderful place called Trombetta's Farm. This place has a woodworking shop where the kids can make little projects, an indoor miniature golf course (18 holes), and a party room where they supply the food, drinks, and ice cream cake with their own homemade icecream. Sammy had never been mini golfing before so he really enjoyed that as well as the woodworking.
He was pretty worn out after the day and fell asleep on the way home. He sounds so congested but is unable to get any of it to drain, regardless of anything we try. Not sure where to go from here. His antibiotics for the sinus infection are finished tomorrow but he is still very congested. And has started pushing his face up against the floor again.

GI update and a playdate

I finally spoke with Sam's GI doctor yesterday. The good news is that Sam's esophagus biopsies were "essentially normal." I obviously am wondering what exactly the term essentially means in this case. The stomach biopsies should something called "Chronic Gastritis." Sam doesn't have any of the major causes of this, and so therefore they are not sure what to do with these results. The good thing is that it is not H. Pylori which is a horrible bacteria. Other causes of this would be heavy alcohol intake (he's NEVER had alcohol) and then frequent NSAID usage. This would be things like Motrin or Aspirin, which Sam can't have because of the bleeding disorder. So unfortunately that leaves us with more questions and not many answers. :-( We will follow up in october if not sooner if needed.
Unfortunately today Sammy has spiked a temp initially and now his temp has dropped to 95.7!!! I am praying that we don't have the temperature regulation issues that we had last year. I wish we knew what the cause of that was. I guess we will see how the rest of the weekend goes, and follow up with the doc on monday.
We also got to go see Sammy's friend Keegan today. IT has been quite a while since we have seen him. Sam was absolutely thrilled and they had a great time today. It is so nice for him to be able to spend time with someone who is "like him" with the illnesses and multiple doctors.

1 John 4:7 NIV •
Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God.

Playground fun

We got to have a playdate with Keegan today! It was totally a last minute thing but worked well in our favour. We drove in to Concord and had lunch and then walked over to a playground that I played at as a kid:-)
We got an appointment for our sleep study today! I am kind of shocked actually as I had spoken with them yesterday and they said that it would be a long time from now but that once they had it booked that we would be on the cancellation list and hopefully get in sooner. And then they called this morning and have it scheduled for SATURDAY!!! It kind of stinks that it is 4th of July weekend and we certainly had some plans but I am so glad that we have it so soon.
We also got the apnea monitor yesterday FINALLY! I thought that I would be able to sleep more once we had this but I am not quite so sure now as it goes off so frequently. But at least the anxiety that goes along with wondering if he is breathing ok is gone.
This week I have really been thinking about my faith and how there truly is no fear reason to be. I know that God has special plans for my special Sammy, I know that His will is perfect, and that He is beside us through all of these trials on earth. And yet in my human nature I am afraid:-( Lord forgive me for being afraid, I know that You are above all of this and that Sammy is in Your perfect hands, and I thank you!!!

Sleepover with Keegan

Thankfully Keegan and family allowed us to sleep over prior to our appointment with the ENT. As usual Sam had a wonderful time. He seemed to have slept well, and really enjoyed playing with a big kid. Laura was a great support system for me as I was voicing my fears about the possibility of Sam needing his tonsils out. Sophia stayed with a friend, and had a good time as well while we were gone.

Family and cookouts

Sam found this motorcycle helmet and wanted pictures taken to show his buddy Keegan. He had a blast, and was so excited that Keegan would be able to see him like this.:-) It is amazing to watch such young kids, and how they interact with each other and what they think is "cool" or how they want to impress their friends.



Sophia and Uncle Dennis


Sam found these toy glasses and put them on and said "Hey mom can you get your camera and take a picture to send to Keegan?" "Keegan will think these are so cool." He just loves his buddy Keegan






Playing with "Grandma Shelley"

Today we went over to Dennis' fiance's family, although they have adopted us and we them. It is so wonderful to have a great relationship with our new family. The kids had a blast, playing with Johanna's mom, who has told them to call her Grandma Shelley:-). The kids had fun, as did I even though my voice is still gone, and I have developed a more significant cough:-( Still praying the kids don't get it..
In the car, Sammy was talking about a wide variety of things, and asked me if he could tell me a story. I said sure buddy. So he proceded to tell me about a "hugest monster in the world, who liked to eat humans." And then he said that it was just a story and that I didn't have to be afraid because God would protect us:-) What an amazing priviledge I have in teaching my children about the God who loves and protects them.

Mass General

Keegan's dad Bob reading to the boys:-)

We came in today for Sam's CT angio-gram. All went well. The nurses couldn't believe how good he was. He said "ow ow ow" when they put this HUGE IV catheter in him, but didn't pull away or squirm or anything. Then we went in to the CT room where everyone kept saying how cute he was. They told him he was going to see a laser show and he was thrilled. :-) Certainly is all boy! So they then rapidly infuse the contrast into the IV and scan his abdomen to see if they could see any of those Arterio-venus malformations. The staff here were all wonderful and so kind. I even had to call because I got lost 3 times while I was trying to get there, and they were apologetic and trying to be so helpful trying to get me unlost. Got to love those crazy Boston roads.
After the CT we got to go over to see Sam's friend Keegan. He has been so excited about this. Unfortunately Sam seems to be coming down with something. Last night about 11pm or so he started coughing with increasing frequency and intesity. So we are here at Keegan's and the boys are having fun playing, although I think they both are over tired and a little bit cranky. Can you believe it I only got one picture this time?
Tomorrow Sam and I will head back into MGH to see the Coordinated Care Clinic and GI. I am praying that they will have the results of the CT angiogram so that we can have a plan to stop this poor boy of mine from suffering.
Miss Sophia is having a sleep over at Miss Savannah's house, so a special thank you goes out to Ivan and Dana for allowing her to stay the night.

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.

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...

Sleepover

They really wore each other out



Sammy's little friend Keegan and his family were gracious enough to allow us to sleep over last week on the night when we had appointments at MGH on one day and at Children's the next. As usual Sam and Keegan had a blast together:-)

Sleepover

The weather was finally warm enough to be outside for a little while. The boys got to ride around the neighborhood, run around and write with chalk








This week was so crazy as we had two days of appointments in Boston, but Keegan's parents Laura and Bob were gracious enough to allow us to stay there tuesday night after the appointment at Mass General, and then they brought me out to the highway to get to Children's on wednesday morning for Sam's IVIG. Sam and Keegan have so much fun together and get along really well. Keegan has really taken Sammy under his wing, and is so protective and concerned for him. While Sammy was taking a bath at Keegan's he had another bleeding episode. Not as bad as a couple of weeks ago, but definitely significantly more than normal. :-( We are still waiting to get the information about this from the hematologist.