Tuesday, March 30, 2010

Rain rain and more rain!!!

****Here are the pics from that day*****

Feeding the wild animals lunch!!!









I love that all this rain isn't snow! But I sure would love some sunshine mixed in with all of this rain! Even though it was dreary outside we had lots of friends over to play today. I am so thankful that we have this house that is large enough to let the kids have a blast. Unfortunately I am lazy right now and just want to go to bed so I won't upload the pics tonight, maybe tomorrow.
Tomorrow will be Sam's first IVIG without Benadryl so please say some prayers that they get the IV in on the first try, and that he doesn't have any reactions to the IVIG. Thanks:-)

Sunday, March 28, 2010

Sleeping beauties

My precious blessings sleeping soundly:-)

Palm Sunday

Today is Palm Sunday, as we go into this week I am reminded so fully of God's love for me, even with my sin and shortcomings. It is easy to get caught up in the worries of this world, with our families, our children, our jobs, our finances, etc etc. But we mustn't ever forget the amazing sacrifice that our Lord made for us.
"On Palm Sunday Christians celebrate the Triumphal Entry of Jesus Christ into Jerusalem, the week before his death and resurrection. For many Christian churches, Palm Sunday, often referred to as "Passion Sunday," marks the beginning of Holy Week, which concludes on Easter Sunday.
The Bible reveals that when Jesus entered Jerusalem, the crowds greeted him with waving palm branches, and by covering his path with palm branches. Immediately following this great time of celebration in the ministry of Jesus, he begins his journey to the cross." Definition from Christianity.com
A biblical account of Palm Sunday:
Mark 11:1-11 (NIV version):
The Triumphal Entry
1As they approached Jerusalem and came to Bethphage and Bethany at the Mount of Olives, Jesus sent two of his disciples, 2saying to them, "Go to the village ahead of you, and just as you enter it, you will find a colt tied there, which no one has ever ridden. Untie it and bring it here. 3If anyone asks you, 'Why are you doing this?' tell him, 'The Lord needs it and will send it back here shortly.' "

4They went and found a colt outside in the street, tied at a doorway. As they untied it, 5some people standing there asked, "What are you doing, untying that colt?" 6They answered as Jesus had told them to, and the people let them go. 7When they brought the colt to Jesus and threw their cloaks over it, he sat on it. 8Many people spread their cloaks on the road, while others spread branches they had cut in the fields. 9Those who went ahead and those who followed shouted,
"Hosanna![a]"
"Blessed is he who comes in the name of the Lord!"[b]
10"Blessed is the coming kingdom of our father David!"
"Hosanna in the highest!"

11Jesus entered Jerusalem and went to the temple. He looked around at everything, but since it was already late, he went out to Bethany with the Twelve.

Saturday, March 27, 2010

MGH- GI and Hematology

We had our first visits with the actual specialists at MGH on thursday, to say it was interesting would be an understatement. Both doctors were extremely thorough and I was able to share so much with them. They really did a good job getting a good past medical history. So the GI doctor believes that Sam could possibly have an AVM in his intestines and htat may be what has caused his bleeding, or at least been a piece of the cause for his bleeding. Info about this...

From WEBMD.com
Arteriovenous malformation (AVM) is a congenital defect in which arteries and veins are tangled and not connected by capillaries. The lack of capillaries allows blood traveling through the abnormal vessels to flow rapidly and under high pressure and prevents the nutrient rich blood in the arteries from reaching the tissues. AVM can occur in many different parts of the body, but those located in the brain, brainstem and spinal cord (neurological AVM) can affect the entire body.

Resources
National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/

Apparently there could be a very mild AVM in the small intestines that has caused the bleeding. Apparently there is a very simple test that can test for this. But we will wait for the results of the Capsule Endoscopy before we proceed with this testing.

Secondly, when we saw the hematologist she also had some very interesting information to share. She asked when Sam had started the IVIG and if they always pre-medicated him with benadryl and tylenol. Which of course the answer was yes. WEll apparently Benadryl can cause a problem with the platelets clotting!!! I would be so relieved if this was the cause of his bleeding. But also extremely annoyed that NO ONE had ever had any concerns about this previously. Can you imagine if silly little benadryl has caused all this drama? All the medical tests, fears, etc etc and benadryl could be the cause? So I spoke with his immunologist and we will hold the benadryl the next dose and see what happens.

So there is certainly something to be said for a second opinion. We also then had an appointment with an endocrinologist as well. She will be looking into some hormonal imbalances that could possibly cause the temperature instability

Tuesday, March 23, 2010

Waiting

Hmmm, I have decided that I have no patience and am sick of waiting! Unfortunately it will be over a week still for us to get the results of Sam's capsule endoscopy, but already I am sick of waiting for the results. It feels like that is what we are always waiting for with him, the medical results and it STINKS!!! I just want to be waiting for spring, waiting to teach him to ride a bike, put him in school, his birthday etc etc. Instead we are waiting ALWAYS for medical results, between blood work, new specialists, procedure results etc it seems like a constant roller coaster lately.
Sorry it is one of those kind of days, where life is stressful and I am tired, and wishing that the dreariness of the rain outside wasn't affecting me inside.

Friday, March 19, 2010

Our little lady

The last year in pictures...

My little princess at her first birthday (double ear infection and all)



Switching to a big girl carseat she was so excited in May of 2009


Feeding the goats at Davis Farmland in June of 2009



My little diva



We are so proud to be American and so thankful that God has allowed us to live in this great country. 4th of July 2009



Catch me if you can mommy!!! (She LOVES to play chase, and sporadically just runs away from us just for fun:-)



Playground playdate before the long winter comes along



Cooking with Mommy, a favorite past time of these kids of mine



Our trip to Florida for DJ and Lyndsea's wedding in November


Christmas beauty



Our little snow baby



This was an exciting day for me! Why, do you ask? Because she FINALLY has enough hair for not one but TWO bows!!!!



Can you believe it? My little princess is two! I feel like this past year has just flow by. You've come a long way in the last year Miss Sophia. A year ago, my little peanut was diagnosed with Failure to Thrive, because she was so tiny, and thus began a flurry of doctors appointments, weight checks, Early intervention, nutritionists, lab work, specialists, and pediasure. DRUM ROLL PLEASE!!! She now weighs 24lbs and is 33.5 inches tall. She is not little any more. They are still going to closely watch her but she is doing fabulously.
At two she is talking in complete sentences, sometimes up to seven and eight words. She is able to get her pants on, and is able to get some shirts partially on. She LOVES to take off her socks and shoes, which has been quite a challenge for me throughout the winter. She loves to have bows in her hair, she loves to have her toe nails painted. She loves to be out and about and playing outside.
She is so much like Matt in so many ways. She is organized and persistent. She tries very hard to figure things out, she doesn't give up easy for anything. She has a temper, and stomps her little foot. She has lots of time outs for hitting Sam, or for being fresh.
She loves to snuggle and sleep with me. She loves her blankie, her baby doll and her seahorse. She loves music and Curious George. She loves Noddy, and Bob the Builder. She loves playdough and bubbles.
She is such a social little girl, and says HI to just about anyone who looks at her. She loves her friends: Tristan, Alex, Maddox, Sadie, Hunter, Dasanee, and Ava.

Boston CHildren's Museum


My handsome little boy and I 8-)



Concentrating hard as a construction worker







This little face just melts me. You can tell he doesn't feel well with the bags under his eyes, but isn't he just so sweet?!?


Not sure if you are a Curious George fan but this is the Doorman costume and Sam was so happy to wear it:-)



Sam's buddy George. HE just climbed right up next to him and kept looking at him, I wish I could have been inside his head to know what he was thinking about his favorite little friend



Wheeeee!!!!! Sliding down George's rocket ship




Going to outerspace with George and his rocket ship



One of the many water tables that Sam had a blast at while we were there.




Flying a plane! He had a blast with this. There was an actual throttle and when he pulled it back it took off down the runway and into the air.



Arthur TV, they actually stood in front of the camera and were then played on the tv. I don't think he quite understood this.


They are laying underneath a see-through turtle exhibit. They were watching them swim all around above them.

Endoscopy update


These two are the pics before I remember his special new johnnie. He was watching a movie in 3D, doesn't he look like he is having a blast? The nurses all enjoyed his silliness and playfullnes.8-)


In these pictures notice Sam's super cool Cowboy johnnie! It was specially made just for him by a wonderful lady in Texas. She started an organization that makes johnnies for sick kids free of charge. So if you are looking for somewhere to donate some money to a wonderful cause, check out her blog at www.heartfeltcouture.blogspot.com I am just so impressed that they do this for these kids. What an amazing thing! And she even made Sam a little pillow with his name on it. Both are fabulous and we are truly thankful.

Thursday was Sam's endoscopy and all went well (kind of). They had to put him under general anesthesia and he did really well. He was so funny. They let me hold him while they put him to sleep, which is great for him, but it is so awful to be holding your child when they go limp in your arms. So anyways, the anesthesia masks are scented with different things and they asked him what he wanted his to smell like and he wouldn't answer, so they made it smell like strawberry I think. So while we were in the OR I kept asking him what it smelled like and he kept giggling and telling me all kinds of stuff: trash, skunk, poopy diaper, grass etc etc. He just thought it was the best thing ever.
So he went in for the procedure, he was intubated then they did the endoscopy and put the capsule at the entrance to his small intestine. Then they reversed the anesthesia and he came to recovery. He slept for almost two hours and then woke up in a good mood. They then let us leave with instructions to come back 6-8hrs later for them to check the placement of the capsule camera. So we took Sam to the Boston Children's Museum.
He loved the museum, and he had a great day. He said several times that it was a "fantastic day". There was a Curious George exhibit, construction site, water table room, etc etc. There was so much for him to see and do. He did seem to have quite low energy but I am sure with the anesthesia that is why.
We then went back to Children's and they essentially plugged the leads that Sammy was wearing into a lap top like computor. And then we saw his insides in real time. It was amazing to actually see his small intestine and possibly the appendix. Unfortunately at that initial time the capsule was not as far down as they would like, or they just couldn't determine where it was as his small bowel and large bowel may not look like what they have typically seen in the past. So they ended up wanting us to walk around some more, and so while we were walking the battery on the camera died, so we are unsure of whether the capsule made it all the way through the small intestines before it stop recording on not. It will take about two weeks for us to find out

Wednesday, March 17, 2010

Endoscopy

Tomorrow Sam goes back into Children's to have the Capsule endoscopy. We got the all clear to do it, even though he has been sick all week. We went and saw Dr V and she said that she is concerned that he is having chronic sinus infections, and is wondering if it is related to the new house?!?!? Uggh how awful would that be. So she didn't put him on antibiotics as they didn't really work last time, we are going to try some allergy medication to see if that works.
Poor little guy can only have clear liquids since noon todya and I could barely get him to eat anything today prior to lunch. He is so hungry, he is enjoying the constant popsicles, but I don't know if I will ever get him to sleep as he is so hungry and wants to eat.
Tomorrow is Sophia's second birthday and I feel terribly guilty that we won't even be with her. She is with a wonderful friend who is planning to do some fun things with her but still I am sad that I won't get to spend the day with her. I will do a special birthday post probably friday night. Can't believe my little princess is turning two!!!!
Sam will be put under general anesthesia tomorrow around 8am so please say some prayers for him. Pray that all goes well, but also that they can find where his intestines are so prone to bleeding and taht it is something that they can fix.

Tuesday, March 16, 2010

Sick AGAIN

Man I feel like we can't get a break lately with these two kids. Brought them both to the docter yesterday, as they both have been feeling pretty under the weather. Sam really hasn't felt well since wednesday but was acting ok enough that I thought that the IVIG would really perk him up and get him over whatever he is fighting. But unfortunately it is not. He has had a low grade temp until last night and is now running a little bit low. He has a cough, runny nose, and NO energy, even slept almost 15 hours last night!!! I placed a call to his primary today (she was off yesterday so we saw someone else) and am waiting for a call back.
Sophia didn't really start acting sick until sunday night, but since he was sick I figured whatever he has she did too so I brought them both. Low and behold Sophia has an ear infection, so that explains her irritability and fever. But then last night she got a rash, I called the doctor and he wasn't overly concerned about it so we are just going to keep on going here. And then she also started to vomit. I am praying that I just don't get puked on today, that essentially is my goal for the day.
It's kind of weird, Sophia certainly has more symptoms of being sick, but Sam is the one that is really scaring me. He just has NO energy and now with the lower temps I am really anxious about him. So please just keep all of us in your prayers as we muddle through whatever these crazy illnesses are...
And to top it off, Sam is supposed to have his capsule endoscopy on thursday, and Sophia's birthday is supposed to be this weekend. Ugghhh, we will just do the best we can.

Monday, March 15, 2010

:-(

You know when you just have a bad feeling about something? Not sure exactly what it is but something is just very upsetting? That is where I am at. I got Sam's blood work results back from the hematologist on friday. And although they have said that he has a bleeding disorder it is quite overwhelming to actually read it in black and white. Harder still is to know that he shouldn't play contact sports, jump on a trampoline, or any other of the many boisterous physical things that little kids like to do. So how do I tell him now that he can't jump in the jumpy house? Or that he can't play sports like he ALREADY talks about when he is bigger? How do I tell him that he is always in danger of bleeding, and that he can't play like a normal kid? That he can't run around without the fear of him having an injury that causes bad bleeding?
But you know what is bothering me the most? His low White blood cell count, the comment that the hematologist made about a "possible bone marrow disfunction" and what both of these pieces of info are leading me to think in my brain.
OVERWHELMED, SAD, SCARED...enough said:-(

Thursday, March 11, 2010

Playgym


Pig pile in the jumpy house


Head first down the slide!



Pull us Mom!!! Pretty please?!?


"Look Mom I'm an alien!"




Can you see the cube behind her? THis crazy little girl of mine jumped off and threw her hands up


Wednesday, March 10, 2010

A blast at Children's

Oh my! So we had some of our favorite nurses today as we had his IVIG. Sam was so awesome, and the first attempt at the IV he didn't flinch or anything, unfortunately the IV blew and they had to restick him. He was very emotional about it but they were so good to him. One of the most fun nurses I have ever met in my entire life (who just happens to be pregnant) told Sam that if he was brave that she would let him paint her belly. And so she did!!! Can you believe it? We are so blessed to have this hospital and these nurses, they always say that it is all about the patient's comfort and happiness. This truly proves it for me. And then there was a harpist playing while we were there, it was absolutely beautiful and soothing to listen to her. Sam was just in awe of her, and couldn't tear his eyes away.