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?

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

Show us your life

Over at www.kellyskornerblog.com, Kelly started a ministry, encouragment link. So if you are over from Kelly's blog, welcome. I hope that here you will find some solace in knowing that you are not alone. That if you are caring for a chronically ill child that you know that God is walking right beside you. That there can be joy in the trial and that HIS JOY COMES IN THE MORNING!!!
This is our story (the brief version8) After a complication filled pregnancy Samuel was born emergently at 35wks gestation and was IUGR (intrauterine growth restrition) and SGA (small for gestation age) He spent some time in the NICU, but then came home. And then for the rest of this year he was constantly ill and ended up being hospitalized multiple times. At 13months he was diagnosed with Hypogammaglobinemia (IgG-1 and IgG-2 deficient) essential this means that his immune system doesn't work. So we now get transfusions ever 3wks. In the last two years we are dealing with new problems, bleeding issues- bloody stools, bloody noses, and abnormal platelets. And more recently problems keeping his temperature normal, and some possible high blood pressure. But through it all, he is such an amazing little boy and I am so blessed to be his mom. Join us on our journey, follow Sammy's story to see what God has in store for him, and please let us know you are here:-)

Love

"Mom can I hold Sophia? I just lover her so much!" Gosh this little boy of mine is just so sweet. He is such a joy and a love. He brings such happiness to my life. And this girl, she is just so full of life and fun. She is so sweet and overflowing with excitement and zest for life. I just love them and am so thankful for each of these beautiful little soles.
Oh and you know what else Sam said " Mommy I need to talk to you about something. I just wanted to tell you I am so so sorry for all those other days when I was naughty." Sweet sweet boy, oh I just love them both so much!!!

IVIG

Today we had our appointment at Children's. It went really well. They were fantastic as ever. The Child Life Specialist was there to play with Sam, and he just adores her, to the point where this mornign while we were at home he kept telling me that he was sick and needed to go to CHildren's. I guess that is a good thing that he really enjoys being there, IVs and all. The not good thing about this trip is that we noticed that his weight is trending downwards. His weight today was 32lb 2oz. I am not sure what this means but it is certainly alarming and is something that they will be looking into. The other weird thing about today was that he had some elevated blood pressures. One the diastolic was 94 and the repeat was 83!!! Crazy for a kid his age. Again not sure what this means, but it is something that they will watch.
He played Dr Sam today. Anyone watch the show Gray's Anatomy? Someone called him Dr Weber today:-) He was so funny with this doll, explaining what he was doing and why to her. Telling her that she was so brave and that he was proud of her. He is just such a sweet little boy, and I am so blessed to be able to call him my son.
We head back into Children's on monday to see hematology, so that should be interesting...

Breafast

Grandma took us out to breakfast the other day, and we had a great time. Thanks Grandma. Matt's grandmother, his Aunt Coleen and his cousin Naomi also joined us. The kids had fun, and Sophia ate amazingly well. Sam did more playing than eating, but he still had fun

Fever:-(

A new week

So here we are in this new week.... praying that Sam can stay healthy until thursday when he gets his IVIG. It seems so crazy that the last few months he has been definitely not feeling as well and it seems like he has been sick immediately before he is due for treatment. He slept 14hrs last night and is dragging this morning but praying that this doesn't mean anything. He is cool, but not cold so that is a plus. I am fairly certain that he has another sinus infection but we don't want to treat it since the antibiotic may cause the bleeding in his belly again. So we just continue for now and see what happens...
In wonderful news Matt's cousin Andrew does not have a tumor!!! His CT Was negative. They are still investigating what is going on but at least it is not a brain tumor.
We are awaiting ANOTHER snow storm, and I am just sick of the cold, can't wait for the warm weather. I think it will be better for Sam to not have to be workign so hard to keep himself warm. Not to mention we can get OUTSIDE and they can run and play and not destroy the house:-)

A little bit chilly...

So Sam seems to be in another cold cycle. Not terribly but a little. His body temp has been in 95s range intermittently this week. Not sure what this means AGAIN!!! He has been a little bit more mellow and sleeping a little extra but not a ton extra like last time. I am thinking that the sinus infection might be back but obviously praying we can avoid antibiotics since they wreak such havoc on his poor stomach. Speaking about his stomach, thankfully we haven't had any more bloody stool!!! Thank you Lord.
I also would like you to pray for my husbands cousin, apparently his doctor believes that he may have a brain tumor. He is really young and a wonderful guy. I can't imagine the fear that must be coursing through him as he is wondering about this. He is going in for the MRI and CAT scans today. So please keep him in your prayers and I will keep you posted....

Hard to believe.....

That my little miracle boy is going to go to preschool in the fall!!!! I still can't believe it. I look back to his traumatic birth due to pre-eclampsia and HELLP and NICU, and the illness that constantly tormented his body his first year, to the transfusions and all of this other stuff that is more recent, and am just amazed at God's goodness to us. This little guy has been through so much and is such an amazing testament to God and His amazing love and strength.
So my big guy and I went and checked out a preschool today! I was kind of nervous about it, but in speaking with the teachers feel totally confidant that they can handle the medical component of Sam, to which point they could contact me if needed. So anyways classroom sizes are small, they have three preschool classrooms, and we met with each teacher. All three were wonderful and Sam seemed comfortable with all of them. Unfortunately their morning program is already full so we are placed on a waiting list for that and then are on the list for the afternoon program.
Hard to believe that this little miraculous boy with severe IUGR and SGA is now big enough to go to school!!!! Time sure does fly!

Pre-eclampsia and HELLP Syndrome

As many of you know I was so very ill with both of my pregnancies. With Sam I was diagnosed with Pre-Eclampsia and HELLP the day before they delivered me emergently. With Sophia I was diagnosed "unofficially" at 30wks when I was transferred down to UMass due to elevated LFTs. This diagnosis robbed me of a "normal" delivery, a normal pregnancy and one where there wasnt constant fear. And since that time I have started hearing of others who have shared this diagnosis, those whose children have lived and those whose children have become angels and gone home to be with Jesus. This past week I learned of a friend of mine who delivered her baby boy at 26wks and he too has past away. My heart is full of sadness as I think about what could have happened to Sam or Sophia, but also for the thousands of people out there that do have birth or pregancy losses.
But you know what is so frustrating and scary in this country? We have the BEST medical care in the world, we have top notch doctors, facilities, labs etc. WHY oh why aren't expectant mothers told of these type illnesses? Why are we not told of warning signs and what to look out for, to hopefully prevent so much tragedy? I think back to the day I went into the hospital for Sam...
Matt and I had gone out for pizza, I was SO EXCITED to finally be off bedrest. The pizza tasted fabulous, but within hours of being home I was vomiting very forcefully. I called the doctors office thinking that I had food poisoning but just wanted to verify that I didn't need to do anything special. THANKFUL Diane said that I needed to come in as she thought I had pre-eclampsia. Seriously? Just from me vomiting and diarrhea? No headache, no swelling, or visual changes nothing! So I drove myself in, convinced that it was just food poisoning. I got to the office they brought me right to the exam room where they found my blood pressure to be 210/114 at one point! An ambulance was called, they started the magnesium, they shipped me to a higher level of care hospital from the local one. They said I was the sickest pt they had had in years. My platelets dropped, my liver function tests went through the roof, my liver was swelling and in danger of rupturing... etc etc. But what if Diane hadn't had me come in? What if I had just stayed in bed for the day thinking that I had food poisoning? That thought terrifies me.
The scary thing is that I am a nurse. I had no idea how this horrible disease presents differently in so many woman. Diane, had been through pre-eclampsia and that was the flag thought told her to have me come in. But what if she hadn't? What if it was a nurse who had never experienced anything like this? SCARY!!!
So again I ask why aren't pregnant woman being warned of this horrific disease? WHy are so many women and babies dying because of it? I want to know. And I think that I am going to do whatever I can to publicize this, people need to know. People need to understant, and be educated.
Here is some links to learn about these disorders:
www.preeclampsia.org (this site is great for people sharing their experience)
http://www.nlm.nih.gov/medlineplus/ency/article/000890.htm
So I may start to post some things here, about this horrible disease/pregnanct complications

Pictures mostly

Story time with Auntie Chantal


Sophia's silly face in the bath tub

Sam shaving like Daddy

Wild and crazy hair

Clowning around and Tristan's 2nd birthday party on sunday. Both Sophia and Sam love Tristan so much and have so much fun with him. The party was carnival themed and thus the clown costumes:-)


Laundry basket fun. Thanks Auntie Sarah!





Last thursday we went to story time at the library with our friend Savannah and her mom Dana. The kids really enjoy each other.





Here are some pics from the last several days. We are doing ok. Hanging in. I feel like I have this cloud over me at the moment and am struggling to stay positive. It feels like there is so much going on in this life that is out of my control, and although I have complete trust and faith in God, it is hard right now to keep my head focused on that.
In my head I am starting to question the IVIG and where we are going to go from here. If in fact Sam is getting sick, does that mean the IVIG isn't working for him anymore? Does that mean that just becuase it is winter that the quality of it is poor? Does that mean that he is going to be sick alot even with the IVIG? All these questions are overwhelming me as I am wondering if the sinus infection is back. And tonight a new thing: while in the bath tub he hunched over and was whimpering and saying that he was so sick, and that something was hurting his bones. Usually when he complains that he is sick or hurting, there isn't usually any crying or whimpering involved. He did have diarrhea tonight so maybe he has a stomach bug, but still I am just wondering...