Friday, August 28, 2009

So behind...

I am exhausted but haven't updated recently (will give you the short version now) and explain more later. We had all kinds of snags and hoops to jump through to get to the new house but we are in and now just trying to get it together.
Sam has been struggling the last few days. He has diarrhea, and has been running a fever intermittenly since yesterday. He has been very sleepy and fussy. This isn't how Sophia presented so I am not sure if these illnesses are related. Spoke with MD on thursday but will call tomorrow if he isn't doing better.
Sophia is still back and forth, she seemed really good today, and ate really well. She also has had intermittent fevers and loose stools. Thankfully the hepatitis screening all came back negative, so it wasn't that. The doctor is thinking that A) It was a really nasty virus that is really difficult to get rid of
OR B) her immune system doesn't function properly and that that is why she has gotten so sick... My thoughts about this are two fold: one if it is such a nasty virus I would expect Sammy to have gotten it (praising God that He didn't) or two that if her immune system is not functioning optimally that she would have been sicker at younger ages as Sammy was. So I guess we just continue to wait this out... IN OUR NEW HOUSE!!!

Sunday, August 23, 2009

It has continued to be a challenging weekend. Sophia has continued to exhibit some strange symptoms with very odd and concerning lab work. She may also be bleeding when she stools. We will check that tomorrow. Our wonderful doctor called a few times over the weekend to check on our little princess. What a blessing she is.
I have come to the realization over this weekend (like a lightbulb moment:-)!!) that Sammy has been healthy all week even with Sophia being ill. All of of sudden today he is acting a little off, but I am praying that it is a fluke. It has always been as soon as someone else gets sick that Sam gets sick. Praising God that this week he has remained healthy, and praying that tomorrow when he wakes up he is still healthy.
And another tremendous blessing, our mortgage broker kind of screwed up with our paperwork, so we weren't going to be able to close on the new house on friday which means that we would technically not have a place to live after friday (my mom was going to let us stay if we needed). But thankfully the man who owns the house currently is going to allow us to stay there until we close!!! Thank you God!!!
Here's a pic of our new house and the current house. So long itty bitty house, and hello big house:-) We are so blessed!

Thursday, August 20, 2009

Sophia Grace

Yesterday we went up to see Dr V and they did a bunch of blood work for Sophia. She noticed this weird rash and then thought that she had HEMOLYTIC UREMIC SYNDROME. Which apparently causes damage to kidneys and could lead to dialysis!!!! I totally freaked out! Dr V called this morning and now doesn't think that it is HUS. Her blood work from yesterday was off, her liver enzymes were elevated, her bleeding times were off, she has blood in her urine... So we are off for more testing today. Please continue to pray for her, and for the doctors that they can make her better, or that the true Great Physician heals her.

Tuesday, August 18, 2009

This littley beauty

is SO SICK!!! I will be calling the doctors office first thing in the morning, and praying that there isn't a hospitalization afterwards. SHe started vomiting and running a fever up to 103.3 monday. Tuesday she woke up and seemed better although she didn't pee. She didn't vomit or anything all day tuesday so I thought we were ok. I called the doctors office when she hadn't gone to the bathroom and they encouraged me to wait a few more hours, so I did. And she still didn't go!!! And now she has started to have diarrhea. Poor girl is quite miserable. The good thing about being a nurse is that to look at her I know she is not SEVERELY dehydrated, but the bad thing is that if I wasn't a nurse maybe they would have let me bring her in and then they could have told me she was fine and I wouldn't feel anxious.

Sunday, August 16, 2009

Update on Sammy

Well Sam is continuing to not feel well. Today is his last day on the antibiotics so we shall see where this takes us. He has also been complaining of increased belly pain since yesterday. I am sure the antibiotic is wreaking havoc on his poor system. So please pray for him for healing for his stomach and for healing from the sinus and ear infections

Friday, August 14, 2009

Sophia's 1 year photos

So I got Sophia's one year photos back today and they came out amazing. If you are anywhere near Mass (or if you are farther away and can pay for a great photographer to fly to you) you should check out Shannon, she does awesome work and is so fun and creative. She meets wherever you want and really tries to get exactly the type of stuff that you want. Check her out:

Thursday, August 13, 2009

Sammy is sick:-(

So finally called the doctor (again ) just to see if they wanted to see him. I was hoping that they would say I was being ridiculous and there was nothing wrong. Well he has a sinus infection, ear infection, and his lungs were sounding pretty junky too:-( So as much as I hate putting him on antibiotics we are again. So now PLEASE PLEASE pray that he doesnt get the intestinal infection (colitis) that he typically gets when he goes on antibiotics.

Tuesday, August 11, 2009


Sam is continuing to be sick. Debating a trip to the doctor tomorrow. It is kind of like this catch 22, you go there because they are sick, but then you get something else because of all the sick people. Last time he sounded like this he had bronchitis and I am leaning that way again. Was hoping it was just allergies but am not sure. Still has temps off and on, but the cough is awful and keeping him up at night. The cooler air seems to be making it better though, maybe I can tell Matt that I need to turn the air conditioner cooler just for Sam?:-)

Sunday, August 9, 2009

It's been forever since I did a montage. Hope you enjoy!!!

Friday, August 7, 2009


So yesterday we went to Davis Farmland with our friends and had a great time. We saw the animals and went to the little play area. After that we went over to the water park and Sam was acting kind of strangely and very quiet. He requests some food so I feed him, but he still isn't acting right. He eventually comes out with "Mommy I wicked sick" So ask him what is wrong and he says he doesn't know. This is totally strange for him as he always complains it is his belly. So anyways we leave and head home. He takes a nap and wakes up and his temp is 104.1!!! Yuck!!! Poor kid, I guess we shall see where this takes us.

Thursday, August 6, 2009

Good and bad news

This is my bed, notice how the kids are completely sprawled over it, that means we don't sleep when they come in in the wee hours of the morning

Phew it has been another crazy week! I have been playing telephone tag with Sam's GI doctor all week. He started stooling complete water on monday and has been stooling almost every time he goes to the bathroom. This started once I started giving him the bentyl and the prevacid together scheduled. The culturelle and fluorastor have not been able to keep up with him lately. Well anyways had a long conversation with her today and she thinks that Sam has reflux as well as irritable bowel syndrome (IBS). This is good news, as it isn't anything life threatening or overly serious. SHe also believes he probably develops ulcers intermittently and that the prevacid will help prevent that. IBS is a chronic condition that can fluctuate between good and bad symptoms. The doctor feels that Sam's case is pretty severe but is thrilled that the new medication is helping as much as it is. He (until today!) had not cried or complained of belly pain all week. He had been running around and eating and seemed like a relatively normal healthy kid, with the exception of stooling every time he went pee. Unfortunately today he woke up crying with the pain, but I am thrilled that it was such a good week prior to this.
Unfortunately he is at an extremely high risk for ulcerative colitis, crohn's disease and various other intestinal disordes solely because of his immune deficiency. So sadly this will probably be something that he will deal with for life. But I am praying that we can continue on a road to him feeling well, more often than him feeling sick. I am not sure why his immune deficiency predisposes him to all of these problems but I will certainly be praying that they GO AWAY!!!

Kimball's Ice cream

We went up to Kimballs in Jaffrey this past sunday with Matt's family. Traci and Peter came up from Virginia so we got to spend the evening with them. And of course we enjoyed the delicious ice cream.

Hanging out with Papa. This girl just LOVES him!!! And we do too!

Sweet Jacob loving on Sophia

The five Weber grandkids

Sammy thinks Jacob is great! He loves hanging out with the BIG boy

Weber Girls~ Ava, Sophia and Allayna

Thomas the Train

Last weekend we were so blessed to be given tickets to go see Sammy's greatest pretend friend, Thomas the Train. My mother in law won tickets for us!!! He was so excited and I really enjoyed watching my kids explore and experience something so different than what they have been exposed to before. The terrible thing about this day is that although I brought extra batteries for my camera I grabbed the wrong ones and therefore when my camera died I had none to replace them with:-(
And to top it all off it was down in Connecticut, a two and a half hour ride each way. And Sam had NO ACCIDENTS the whole day there or back. We stopped once on the way there for him to go but he made it the whole way home with no accidents.