What to do...

When your favorite little dude gets a terrible bloody nose and gets blood all over his favorite shirt????

Oxy Clean is our favorite stain remover, and got the blood out no problem. And restored this handsome smile to my little guy. Thankfully the bleeding resolved without incident, but I admit I was anxious when the blood was pooling in my hands. We have this 20minute parameter from the doctor, if it doesn't stop within twenty minutes it is to the ER we go. But thankfully this one resolved quickly.

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.

The calm before the next storm...

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

New day

Sammy seems to be feeling much better, thank you Lord! The antibiotics seem to be helping him tremendously. He has intermittently been having loose stools, but prayerfully it won't be anything too problematic. His temperature have been normal too, no more cold boys, well tonight he was cool, but it may have been from the bath and he actually spiked a temp the other day. He is so hysterical and says some of the funniest things...
Yesterday "Hey mommy can you tell me when one minute is over?" Sure Sam why? "Welll becuase I put Sophie in time out and I need to wait for one minute to get her out" And there over on the steps is the little princess sitting with a scowl on her face waiting to be allowed to get out. I almost burst out laughing, I had to try so hard to not laugh. So he went over to her and asked her why she had been put in time out, and she said "I hit" and he said "it's not ok to hit, now you have to apologize." Oh my goodness, he does hear me occasionally! All this trying to teach them right and wrong is working:-)
Today he was being a little fresh and rude and then asked what we were doing tomorrow, I told him that we weren't going to be able to do anything as people don't want to be around naughty kids. His response "Fine I will change my behavior." Oh my goodness, can't believe my three year old talks like this. Smarty!!!
In other news, taking Sophia to the doc in the AM, thinking she possibly may have an ear infection and sinus as well. Please keep her in your prayers. Thanks

Jump, jump, jump!!!

When Sam is sick it is easy to forget that for the most part he is a happy and active kid who leads a happy although not typical life of a 3 year old. He has friends, he plays with his sister, he jumps on the bed etc etc. These are the days that we are fighting for and the days that we pray come more and more frequently. These are the days that we know that we are doing the right treatment for him. And so right now as he is sick, I remind myself from these pics from the past, that God is in control and that God knows Sam's future and that His plan is to prosper him and not to harm him. Thank you God for loving my boy, for healing him, and for making him such a happy little guy!!! Please continue to pray for him that this antibiotic does the trick, and that this coming week will lead us to more answers for Sam

I love my boy

These were taken a little while ago, but I never posted them 8-) And I love them! Sammy seems to be doing well. He already sounds much less congested. He did have a loose stool yesterday but they were normal today. Grandma and Papa watched them for a while today as we went out to eat and to a movie for Matt's birthday. They were well behaved and had a blast with Grandma and Papa. And Matt and I had a nice time actually being together as a couple, I can't even remember how long it has been since we did something without the kids.
We have started giving Sam the multiple probiotics again, in an effort to prevent C. Diff. Please pray against the C diff. He seems to be feeling already much better, thank you Lord. Sophia woke up all sniffly today so please keep her in your prayers.

Sick sick sick

So we went and saw Dr V today. Sam has bilateral ear infections, a sinus infection and a ton of post nasal drip 8-( I feel so bad for him. The weird thing is that he hasn't had a cough, runny nose, or even complained that his ears are bothering him. Although it is awful to have him sick, this is almost a relief as at least we have a reason for the crazy temperature fluctuations this week. Dr V thinks his body just isn't capable of handling the stress of being sick so it reacts with the crazy temperature fluctuations. We obviously still need to go see an endocrinologist to see what is going on here, but at least we aren't looking at his body being incapable of maintaining his temp with no reason. So we have ten days of amoxicillin, and lots and lots of praying that we don't get C. Diff in the process
I spoke with a nurse tonight who has a daughter with an extremely rare medical condition that almost took her life before the doctors had even determined what the cause was. She was really helpful, and really recommends trying to get in to a geneticist to see if there is anything that they can determine. It certainly would seem that the oddness of his symptoms would possibly belong to some type of syndrome, and if we knew that maybe we could take care of him better.
I am just praying that God continues to lead and guide all of us in caring for Sam. That he is able to continue being the happy playful beautiful spirit that he is and that he continues to thrive.

Early Intervention

Sophia had her EI assessment today. We all expected that she would no longer qualify because she is so advanced in many areas and because she no longer has the failure to thrive diagnosis due to weight. And as expected she was beyond her age in many areas. She is currently 22 months old, the following is a brief assessment of how she did.
Her Social-Emotional evaluation placed her at 27months, this is her ability to express her feelings, interact with others, ande ability to focus and attend to tasks.
Her Cognition placed her at 23months. This is how she engages in purposeful play, to discriminate people and objects and to to solve problems.
Her GrossMotor placed her at 27months. All assessors were impressed by her capability to do many things, at one point they had asked me if she was able to stand on one foot while holding on to something, I wasn't really sure. She stood up and did it without holding on. Little Miss Independant.
Her FineMotor placed her at 25months. This how she draws, and uses her hands to assist her in the world.
Her AdaptiveSelfCare placed her at 27months. This area was a struggle for the speech pathologist as she feels there still is issues with feeding but due to the fact that Sophia is able to use utensils, drinks well from sippycup, strawcup and bottle and chews/swallows well she scored higher. For feeding she scored 27months, for toileting she scored 25months, and for Dressing she scored 29months!! Yup, she is already into fashion:-)
In her communication department: in the receptive language she scored 25months, this is her ability to understand what is being said to her. Her expressive language placed her at 26months, adn this is her ability to express her wants and needs through gestures and vocalizations.
So needless to say she has graduated from the early intervention program, although all evaluators felt concern for her with her feeding issues, especially since we will be stopping the pediasure. They were trying to finagle a way to keep her on their service due to a clinical issue but due to the fact that we don't have an actual diagnosis they were unable to do that. They noted that she seemed a little jittery, which I have never noticed before, and they recommended further GI studies to determine if there is a lower GI tract issue that is preventing her from eating well. But at this point, what is going to happen is we have to wean her from the pediasure and see whether she gains or loses weight

Update on Sammy

Sam had an ok night last night, and his temp was 95 this morning. Still low but not as low as it could have been. Thank you Lord! He seems to have very little energy today but is in a fairly good mood, and he keeps telling me he loves me. I love you too baby!!!
At this point we will probably be seeing Dr V today even though it is her day off. I am so so thankful for her. She is so amazing and such a blessing to us. God truly blessed us with her, as she truly cares about Sam and wants to get him better.
So we are waiting to hear back from Children's to see which day we are going in to see the endocrinologist. We are there next week for his IVIG too. I think it is going to be a crazy exhausting week or two. Please continue to lift Sam up in your prayers and his doctors too. Thanks so much!

Scary

This morning I woke up to hearing Sammy whimpering:-( I called him but he wasn't actually awake. We were having a campout in the living room, since that room is the warmest. I went over and felt him and he felt cold. So I checked his temperature, the ear thermometer said 93.6 so I of course had to get the rectal. Now this whole time I am talking to him and he isn't responding. I checked his temp rectally and it was 94.7 (34.8 celcius), he didn't even respond to the rectal thermometer. So I stripped him and used my body heat and the wood stove to warm him up while I called the doctor. His temp is in the 96s now, but it sure is scary. Talked with Dr V and she is calling Children's Endocrinology. So I am waiting to see what the plan is going to be. It is so scary, in all the times of him having a low body temp, he has never not been appropriately responsive. So please pray for him, and for his doctors for wisdom. Thanks!!!
These are some of my favorite pics of my little man from when he was 6months old, and life was way less scary....

To Auntie TeeTee, NeeNee, and Uncle Danny with Love

We had a wonderful call with our Auntie TeeTee today (but she is all the way in Oregon) so unfortunately we don't get to see her. My kids LOVE talking to her on the phone, and Sammy especially likes to tell her about his toysand what he has been up to. This is the typical conversation...
"So how are you Sammy? What are you up to? I love you and miss you so much."
"So TeeTee I am good. I am watching a show, and playing with T-Rex. TeeTee you know the other day what I did?" So tonight we decided to show you TeeTee, what we have been up to. We would love to show you in person if you want HINT. HINT:-)


We wish we were hugging you instead! We miss you and love you so much! This is us sending our hugs to you!!!



These are my babies auntie do you like them?

This is my kitchen, I will make you a snack if you come over


See Auntie this is my monster truck, you want to drive it with me?


This is T-Rex, I will share him if you want to come and play


This is our work bench that we got from Auntie Tracy and Uncle Tim, we love to build all kinds of stuff here

Winter fun with Daddy

It seems like this year with all of Sammy's temperature issues that we are missing all of the fun of winter:-( Last year Matt made a little tiny hill in our backyard and Sammy went sledding and has been asking all winter every time it snows if he can go sledding or play out in the snow. Well we finally let him the other day, we had a couple of days of an almost normal temp, and it wasn't too cold so out he went and he had a blast. It was only like 20minutes or so but he had fun.
AS we continue to wait for more blood work results we have to keep trusting in God to keep him safe. And on those days when his body is warm, we will got out and enjoy this CRAZY NEW ENGLAND WEATHER!!!

Not quite sure what they were doing but they were having fun doing it:-)



My baby boy growing up SO FAST

So handsome! Yup he does have pink mittens, couldn't manage to find his so we borrowed Sophia's. He might not let me get away with that much longer:-)

Precious blessings

Hematology update FINALLY

Well I finally heard back from the hematologist. The results I must admit are really annoying. It is quite frustrating when a very brilliant doctor from Children's Hospital Boston says "Well the mystery of Sammy continues, I am sorry!" Ugghhh!!! So essentially what has happened is they did multiple multiple tests when we went in. And her exact comment was "WEll the results are kind of confusing." So not what you want to hear when they are talking about your kid.
So essentially many of the tests came back perfectly normal. PRAISE GOD!!! Then there were a couple of platelet tests that did not come back normal. But the confusing part, is that where one test was abnormal they would have expected another to be abnormal too and it wasn't. So apparently there is another big wig hematologist who is developing a new test to test platelets in a different way, so when that test is fully developed I guess Sammy is going to be a part of the initial testing with his blood.
So now what she said is "Well there is a problem with his platelets but we don't really know what." She was very apologetic and nice, and I could tell that she really wished that she could have been more helpful. But for now it is what it is. There is one more test that is still pending, but I guess that will take a little while longer. We have another appointment in a month, at that appointment we will develope a plan as far as what needs to be lined up for him if something happens with bleeding:-(
It is all so very frustrating. I hate saying "Yeah there is something wrong but I don't know what, I don't know how to help, I don't know how to treat it or make it better. I don't know what the triggers are, or what helps or prevents it." God knows this and I am so thankful that He is on our side. IF GOD IS FOR US, WHO CAN BE AGAINST US?!?!?

Amazing inspiring women

My mom and my gram are two of the most amazing women I have ever met in my entire life. The two of them taught me unconditional love, forgiveness, perseverance, hard work, and selflessness. They sacrificed and continue to sacrifice of themselves to better the lives of those around them. They put their children above themselves in all circumstances. They are hard working, working tirelessly to provide for their families. They pray continuously for their families and friends. Gram and Mom thank you for being Godly women, women whom I strive to be like. Women who always make me proud! I love you with all of me!

Tracy Worthley

We were so excited to be able to see our cousin Tracy while we were down in Virginia. We were disappointed to not be able to see her husband Peter. But had a wonderful visit with her. We had a great dinner together, and then were able to have a nice visit, although it was much too short:-(

Aunt Leslie and Uncle Bruce

Sophia being the very independant little girl that she is, decided that the dogs cage was for her. And Uncle Bruce (jokingly) argued with her that he was a cop and that she needed to listen to him. She argued right back at him, when he told her to get out of the cage, she said no. When he said "Do you know that I am a police officer?" She said No. He asked her if she wanted to see his badge, and she said no. The conversation between the two of them was so funny. Here you have this big man telling her to do something in a somewhat stern voice and she is telling him no. I guess that is a hint as to what the future holds with her. He also took her for a ride in Grammies HoverRound:-)




While in Virginia we got to spend time with Uncle Bruce and Aunt Leslie too. Aunt Leslie, the kids and I took a walk to the local playground and had a blast with the kids. Sure do wish we could go to the playground in january at home!!!