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.

Mass General and the MBTA

Walking to MassGeneral after we got off the T


Sammy, my big boy riding the T

Well Sam and I got up early and dropped Sophia off then went to train station. I can't even begin to describe the shear joy that Sam had as we road the subway. Simple pleasures right? It was the first time that I had braved the subway myself and thankfully everything went very smoothly.
We then went to Mass General Coordinated Care Clinic, and this place truly seems too good to be true. It is hard to imagine that there could be another great hospital that is comparable right next to Children's. I am trying to not think too much about it until I have my follow up visits. But as I spoke with the doctors nurse practitioner, social worker, and a few others, I really felt as though they were really there for us and that they would do WHATEVER we need to get the best care for Sam. For example, the doctor said what do you think are Sam's two biggest issues right now? And when I responded GI and bleeding issues, she said I will get you an appointment with those specialists. She called me before the end of the day, and has an appointment with both specialists within 2 weeks!!!
They are also researching our school district to determine what will be needed for Sam to be safe at school here:-)

Fireproof your Marriage

This week is possibly going to be quite crazy, I am praying that God carries us through. Matt and I are attending a study called Fireproof Your Marriage. Have you seen the movie FIREPROOF with Kirk Cameron? If you haven't I highly recommend it. This movie is about a couple struggling in their marriage, and about how they rebuilt their marriage for the stronger. This is the link to the site about the movie. Check it out. http://www.fireproofmymarriage.com/ I am so excited that we are doing this, and about the hope that this isn't it for us, that God has a bigger better plan. We are also reading the book the Love Dare, this is a challenge in order to day by day treat your spouse as they deserve, as we have been called to do. It is so encouraging to me to be doing this.
Sammy and I will be in Boston a lot this week. Tuesday is our trip into Mass General for the second opinion in the Coordinated Care Clinic. Dr V is writing up a comprehensive history of Sam, so that prayerfully they won't want to repeat anythign that has already been done.
Tuesday night Sammy and I are sleeping over Keegan, Laura and Bob's house. This is Sam's little IVIG buddy. And the boys are just thrilled beyond words to know that this is coming up. And it is so nice for me to have someone to sit and chat with face to face about all of the anxieties that come along with having a chronically ill child, that most people don't completely understand.
Wednesday we have IVIG, and of course we are thrilled that we will be seeing Khadeisha, and that I don't have to drive from home in to the city both days. Thanks Laura and Bobby.
I have some amazing wonderful friends who will be caring for Sophia on these days. Thank you to Shannon and Chris. PS I am praying NOW that she sleeps well for you:-)
Thursday I am not sure what is going on yet, friday is playdate, friday night I am working. Sunday is my best friend's bridal shower etc etc
We are still waiting to hear about the capsule endoscopy but that is going to be relatively soon too. Busy busy!!!

Winter fun

Feeling Nostalgic...

You know these last two weeks have been such an emotional roller coaster for me. I have been so anxious about Sam, and what the future will hold for him. I know that I should not be anxious as God is in total control and His plan is way better than mine, but nonetheless seeing Sam have such low energy and being so ghostly pale has been a constant reminder that there is something very wrong with my boy. And so all this thinking has gotten me to start looking at some of his old pics, so I decided to share some of my all time favs with you... Sam you are an amazing miracle and bring such joy to my life. I thank God for you each and every day. I learn patience, and deeper love, self-sacrifice, and selflessness. You teach me how to love deeply and completely. My precious first born son, I love you from the depths of my sole. May you always know that (we love you!!!)

Your first trip to the CAT/CR and the IVIG that has changed your life


Out like a light at Childrens.



Learning to walk


Excited that you are going to be a big brother


Swimming and making all kinds of silly faces


I think you wore more cake than you ate at your 1st birthday party


Davis Farmland with your friend Catherine


4th of July with Dasanee Shari


Sleeping peacefully, on one of many hospitalizations


Beautiful smiles that melt my heart


First trip down the slide


Cool dude sunglasses just like Daddy


Sweet Cheeks:-)


Your first Christmas, after being discharged on the day before Christmas Eve


First trip to get Apples and Pumpkins (now a yearly tradition)


Little tiny miracle baby shortly after birth


My ABSOLUTE favorite NICU picture, so awake and alert

GI appointment and Boston CHildren's

Today we had a follow up appointment for Sophia at the GI clinic. He was happy with her growth, althoug he wished it had been more. She now weighs in at 23lb 9oz and is 32 inches tall. She is getting to be such a big girl. She is in about the 15percentile or so. We will go back in three months and if she has maintained her weight then we will only have to follow up with our primary instead of GI!!! It will be nice to have one less specialist appointment.
The GI and I did talk about Sam while we were there. He is anxiously awaiting the approval from our insurance to do the capsule endoscopy for Sam within the next couple of weeks. He said that there is very minimal risk with this procedure, besides the anesthesia piece. Sam has done really well with anesthesia in the past. The study will take about 3pictures a second as it travels throughout his GI tract. He is hoping to see exactly where the tissue is prone to bleed. If it something that is easily visualized they will try to remove that tissue ASAP in order to prevent further bleeding episodes. So I am not sure what I am praying for in this case, I just want God to heal him. Do I pray the scope reveals somethign so they can remove it and hopefully alleviate the risk of more bleeding in the very near future. Or do I pray that they find nothign and still have this anxiety over when he will bleed like that again?? I don't know:-(
In other fun news, they were doing a fundraiser today at CHildren's and the kids were actually interviewed and photographed:-) They are raising money for Childrens. Some of the stories were so gut wretching, it is easy for me to get overwhelmed and scared with all we are dealing with SAm. But today I am so thankful to God that He continues to love and protect Sam, we are so fortunate, it could be so much worse. He has had some increased fussing and irritability in the last few days, and seems to definitely be dragging, but today was a good day for him. And we get IVIG next week
We also got to see Keegan today which is always fun and Auntie Chantal came to help me tame my two wild indians while we were there:-)

The kids lined up for the photographer for the radio station. Notice my two are totally uninterested

Sam being a total ham for everyone and making them laugh

Platelet aggregation

Sam got a much needed hair cut today. It was so wonderful because the hair dresser was willing to come to our house so I didn't have to drag him out, and she came on our timing. Fabulous, thanks Felicia...
In other news I had a very lengthy conversation with Sam's hematologist yesterday. Essentially what she said was that the blood tests they did last monday after his GI bleed, were worse than previous tests. The problem lies within the platelets, and it is related to the platelet agreggation, which essentially is the part of the clotting factor in which the platelets clump together to form a clot. But essentially his platelets don't fit well together and that is why he has been bleeding. Dr Grace believes that there is also a GI problem that is exacerbating the bleeding problem. She seems to think that the bleeding problem will improve was they fix the GI problem. There is no long term treatment, there is no prevention for this. The only treatment is for when he has a bleeding crisis. At that point they would give him a transfusion of platelets and that should resolve the immediate bleed.
Here is a link to learn more about platelet agreggation if you would like to learn more about this. http://medical-dictionary.thefreedictionary.com/platelet+aggregation+test
This is some info quoted from the above page..."There are many factors involved in blood clotting (coagulation). One of the first steps in the process involves small cells in the bloodstream called platelets, which are produced in the bone marrow. Platelets gather at the site of an injury and clump together to form a plug, or aggregate, that helps to limit the loss of blood and promote healing.
Inherited bleeding disorders (e.g., hemophilia or von Willebrand's disease) and acquired bleeding problems that occur because of another disorder or a medication can affect the number of platelets and their level of function. When these problems are present, the result is a drop in platelet aggregation and a lengthened bleeding time.
Prolonged platelet aggregation time can be found in such congenital disorders as hemophilia and von Willebrand's disease, as well as in some connective tissue disorders. Prolonged aggregation times can also occur in leukemia or myeloma; after recent heart/lung bypass or kidney dialysis; and after taking certain drugs."
I am not sure where we go from here. I am not sure what this means for Sam, for the immediate future, or long term. It was so overwhelming yesterday to get this news, and although it is a relief to finally have an answer, it is still scary to have this as a diagnosis. I am looking forward to getting all of the written information, and to see if there is an actual name to whatever this bleeding disorder is. And what all of her recommendations will be.

The upside of being sick

Well I am trying to stay positive in this crazy journey with Sam. And today as I cuddled this beautiful little guy who seems to be getting thinner and thinner, I was reminded that I am cuddling him and he LOVES me so much! He wants to cuddle with me and have me kiss him and hug him. He wants me to read to him and tell him about the world, and why Jesus has to be "inmisible" (invisible) all the time. Some day he isn't going to want to snuggle with his momma, so for today I will hug him and kiss him all he wants. I will be praying that he feels better, but I will live in this moment of love

I've waited a long time for this...

Sophia finally has enough hair for TWO BOWS!!! It has seemed like forever that I have this gorgeous little girl who won't wear headbands anymore, and I have been waiting NOT so patiently for her to grow all this hair. Now I am going to be in lots of trouble with Auntie Tracy's beautiful bows. You should check them out, www.fiveblessedbows.com and tell the I sent you 8-)

Frustrated and Angry

Uggh so annoyed. Yesterday we went to see our PCP, after waiting two days to hear back from the GI doctor, regarding Sam's watery stools and refusal to eat. Those are his symptoms, explosive watery stools, belly pain, and he won't eat. You know what the doctor said to me after I waited until yesterday for him to return my call? He said "you should take him to see his primary care doctor maybe he has strep throat!" Are you kidding? Where does diarrhea cause a sore strep throat?!?!
So anyways we went in and saw Dr V yesterday. Sam's weight was down six pounds on her scale since december. I knew that he was losing weight but I had no idea how bad it was. He looked ok to Dr V. She said he was "fairly hydrated", and that I needed to continue to push fluids. He did have some swollen lymph nodes so we know that there is definitely an illness going on, but she wasn't able to find anything, ears throat, sinus' etc. So now we are just praying that he will get better, this diarrhea will go away, and that he will start eating again.
We are also trying to get a second opion through Mass General Coordinated Care clinic, which apparently is a whole group of specialists who meet together as a team to determine your care. So if you see GI, hematology, immunology, and endocrinology like Sam, those four specialists would have meetings to discuss your child and determine what the best plan was. And then when you go into appointments they are all there, so you don't have several separate appointments. So we are hoping to get in there very soon. Please pray that God opens the doors for this to happen. For now enjoy this super old pic of my handsome boy. I just haven't taken any recent this week, and I am just plain old worn out. This week has really been tough for me, and I have been struggling with feeling alone. But isn't he just gorgeous?

"I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord." 1 Samuel 1:27-28

Baby Maddox comes to play

We had a wonderful distraction from the worries yesterday. Unfortunately my friends Bethany and Brian were very sick and therefore needed someone to watch their beautiful little boy Maddox. We thought we would just have him for a few hours but it ended up overnight. It gave someone for Sophia to play with so that Sammy could rest and stop crying because Sophia wouldn't leave him alone. Sophia and Maddox had a blast, Sophia just crawled after him and kept giving him tons of toys. Maddox got a little overwhelmed with the splashing in the tub, but otherwise he had fun with my two crazies!!! And he is such a good baby. :-)
Our PCP came over last night and we discussed Sammy and the possibility of getting a second opinion someplace else. Especially since both the GI doc and the hematologist both seem to be saying it is the others issue. So thinking about that. And still waiting for the results...

Maybe....

Maybe today we will find out some answers, maybe today I can stop being nervous about what is going on. Maybe today the fever will go away. Maybe today he will have energy again. Maybe today he will stop looking so pale and pasty. Maybe today the pain he is having will go away. Maybe today he will be running around again and playing with Sophia. Maybe today I will be able to get him to eat again. Maybe.

:-(

Tonight as I write this I am totally feeling down and discouraged. I am trying so hard to not allow the enemy to steel my joy but it is so hard to not be anxious about Sam and all that is going on with him. It is so frustrating to have the doctors who are supposed to be some of the best in the world all baffled. It is hard to not know why he continues to bleed. It is hard to not know how to treat him if he does. It is hard to hold him down so they can poke and prod him over and over. It is hard to think about the repercussions of the things he has to go through. It is hard to stay focused on God and not on the sadness that comes from within. I just want so badly for him to have the immune system piece and nothing else. or NOTHING wrong at all. I don't want all these other GI, hematolgoy, and endocrinilogy questions.
All that complaining to say we are home. We are home at least for the night. Didn't get home until after 7pm, and we will be awaiting some blood work results to see what they are going to do next. They are talking about doing a Capsule endoscopy fairly soon, but beyond that I am still unsure.
He has lost more weight since thursday. They aren't sure what this is all about, but it is a little over a pound. His hemoglobin and hematocrit steadied this AM, but had dropped last night so they know he is definitely bleeding. His blood pressuer was again elevated.
Thanks for your prayers for my boy, please continue to lift him up frequently in prayer to God.

Last week in pictures

We had a big sleep over at Auntie Sara's house on saturday night. The kids had such a blast and really all behaved so well. They slept fairly well, well Sam did. Of course that probably should have been a hint that there was something going on. He usually wakes up a time or two at night for a drink of water or soemthing, but that night he slept straight through, and that was the day before all the bleeding and craziness started again

Sam and JJ had a blast playing firefighter and police men.

Milk shakes with our sleep over buddies










6 kids, dressed and ready for church on time!!!


Sophia exhausted fell asleep in her chair

Jumping off the trailer sure is a blast right Sam?