Quick Update

Yesterday was such a scary day. I knew that Sammy didn't feel well as he slept in very late. But he started crying inconsolably, and that lead to wailing and he was hysterical, he compalined of belly pain and also throat pain. I didn't konw what to do, I called both GI and Dr. V. WE went in and saw Dr V who thinks that it was severe muscle spasms or crying. But thankfully it got better and hopefully will not reoccur. His sinus' have drastically improved so we are working towards the right direction. Please continue to pray for him.
WE are still waiting to hear what is the actual day that we will do the IVIG, will keep you posted.

IVIG

It's official we will return back to the every four weeks of IVIG. Sam's immuno said 3-4wks so we will see how it all pans out. I thought I would feel some sort of relief or something, but I don't. I was hoping that I was wrong and that his levels would come back good and that he would just get better and not need to go through it again. I guess I am just overwhelmed at the thought of doing this all over again...
In HAPPY news we had a wonderful playdate with Keegan today. Sam absolutely loves playing with the big kids and Keegan is so sweet and takes care of Sammy. WE went to a delicious bakery and then took a walk to the playground. It was a gorgeous fall New England day. The playground that we took the kids to is one that I played at when I was a kid:-)
Sam did end up with another sinus infection and is on a fourteen day course of antibiotics. So please pray that we don't get any ill side effects from that.

Well child check up

Holy moly my baby is 18months old!!! I just can't even believe it. It just seems like she just got big overnight. Everything went well at her appointment and the doctor was thrilled with her progress and get this her 2 ppound weight gain!!! She is 22lb!!!! And 31 and 1/2 inches tall. She I guess could technically lose the FTT diagnosis now, but the doctor didn't acknowledge that when I asked her. She has 11 teeth and is working on a couple more. She is talking amazingly well and surprises me each day with what she can say. My favorite saying that she has is "I love you" which totally melts me. She also is saying "amen" when we are done praying unprompted now.
I had Dr V look at Sam's sinuses and they are looking pretty gross she said. We are going to try some conservative measures first, to prayerfully avoid antibiotics. She hasn't heard from his immunologist either, so we are all waiting anxiously for the results
Sam also saw the other GI doctor today. He weighs 29lbs still. He had been up to 31lb at one point but this is what he weighed when they weighed him in july as well. She is still pretty baffled by Sam and doesn't really know what to do. We are going to trial him off of the cramping medicine and are giving him the same appetite stimulant as Sophia to see if we can get him to gain some weight.
These are the pictures from making cookies the other day. Thanks Ang we had a wonderful time...

Monday

Well tomorrow we go to the doctors again. PRaying that we also hear from Sam's immunologist, although towards the end of the week is more likely. I am pretty sure he has a sinus infection and we will need to put him on antibiotics again:-( WE shall see. His stools are all of a sudden significantly worse, but thankfully there isn't blood. Maybe he is just reacting to something he ate. We shall see.
Sophia continues with her cough/cold symptoms. I will probably ask them to check her levels tomorrow. I think at this stage of the game it will just be comforting to know that she is fine that way. Or that she isn't and we can then deal with that too. I know it will be ok either way and that God will help us through it.
In other news we went for a LONG walk today, more than two miles, and my daughter said "Hi" continuously the whole walk!!!! It was kind of funny.
We also decorated sugar cookies with our friends. I will post those pics tomorrow. Thanks Ang!!!

Colds, fevers and the playground

As we wait out the decision of Sam's immunologist both kids have gotten some type of cold type illness. Sophia has actually had respiratory symptoms for over a week but was doing really well until thursday when she developed a fever. I brought her to the doctor, who didn't see a source of infection and wanted to wait until friday to see if she needed antibiotics. Friday she was still febrile, so he wanted to start her on antibiotics. I was hesitant as she has had so many reactions to antibiotics, and we didn't have an actual "source" of infection. (SOMETIMES I HATE THAT I AM A NURSE!) Anyways he understood my hesitation and basically has left it to my discretion to call if I do need the antibiotics. And then he wants her to see Trish ASAP next week. He was I guess starting to question whether there could be some immune compromise with Sophia as well because of the fact that she takes so long to get over the things. She hasn't been ill much but when she does it take FOREVER to get over it. SO I think I will be asking her primary to check her levels for my own sanitity next week. Please pray for her that this is just a fluke.
Sam has had a so-so week. He has complained frequently of pain and has been eating horribly until today in which he ate a pretty good lunch. Had a lenghty conversation with his "other GI" doc from UMass, and she is thinking if this continues that they should scope him ASAP, and then AGAIN if he bleeds!!!! I don't know what to think of this idea, as it was so traumatizing to him. I will talk to his primary on monday and see what she thinks, as we see that GI on tuesday.
I wish this blog was more about playdates and fun instead of being scared, and anxious and waiting for more medical stuff all the time. Oh well! Well here are some pics from the other day at the playground. Sam is becoming quite the little monkey. And for all those people who think Sophia has NO HAIR, you can see it sticking out:-)

SIGH.....

Sammy with his new friend Keegan hanging out in the infusion center at Children's
Hospital. Everyone was so wonderful as always. They gave us hugs and Sam was so
happy to see all of them. But BEYOND EXCITED to meet Keegan!!!





Hmmm, I know it has taken forever to get this post up but it has been nuts. (sorry Tiff)
Let's start with the positive: Sammy has met a new friend and I have too. We met Keegan, his mom Laura, and his Dad Bobby. It felt like we had know each other forever. It is amazing how having a chronically ill child instantly bonds you with people that are in your shoes. Sammy woke up this morning and was begging to go to Keegan's house and play again. WE are hoping to get together next week! WE can't wait.
Now on to the other not so fun stuff, essentially Dr B wants to wait and see what happens with Sam's IgG levels and basically see if he continues to get sick. I can't tell you how disappointed and frustrated I am with this decision. I was stressing out and anxious about yesterday's appointments thinking yes we are going to have to restart, and that was just anxiety producing, but now I am more anxious as we "wait" to see how sick he gets! His blood work will be back in 7-10 days and I guess we will start to form some type of plan at that point. Whether it is we wait and see how he does or restart IVIG because they are low I don't know. I was getting to the point of acceptance and thinking that it wouldn't be so bad, and I wouldn't so scared of him getting sick if we did it again. And now well now we just wait....
His GI doctor was pretty disappointed that we didn't call him with this last bleeding episode and to be honest I am feeling horribly guilty that I didn't. I wish that I would have now. But when we got the second opinion from the other GI I just called her right away this time. But essentially what he is saying is that the next time he bleeds that I need to call him and he will admit him to Children's that same day, they will do a bunch of cultures and blood work, wait for the cultures to come back and then do colonoscopy/endoscopy, and possibly more invasive surgeries depending on what those show. So again we wait.... He had lost weight again which is discouraging he is now 29lb 10oz at 3yrs old!!
Miss Sophia on the other hand the doctor was thrilled with! She gained nearly two pounds since the last visit. So she is now 21lb 11oz at 18months. We will continue the periactin and pediasure the way it is for about six more weeks, and then start to wean her down.

Maybe tomorrow

So tomorrow could be a big day for us tomorrow. We may know tomorrow depending on what Dr B says about restarting the IVIG. We may not though, we may have to wait for the different blood work and stuff. I would think that with all the other docs on board with this, and his history of illness over the last few months that we possibly could know tomorrow prior to bloodwork. I am relieved to know that we have good insurance and had no issues getting it covered last year, it may already be approved through october of this year too so who knows. We shall see... God has the whole situation in His hands, and it is just a matter of walking this path as He leads.
We are excited as we are going to meet a new friend tomorrow. Laura and her son Keegan also deal with IVIG. And it has been awesome to talk with her, I can't wait to meet someone who understands what we have gone through with Sam. We also will be seeing our old friends in the transfusion center, Sam is so excited to see them. They are so wonderful there.

IVIG here we come????

Well let's see, we are still pooping blood, running fevers again, and generally pretty irritable. He has some good moments when he is his normal self, but it has been a rough weeek. His primary thinks we should definitely go back to the IVIG, which I was like " Oh yeah another year would be great and then we can get him through the winter and see how he does next year" To which she replied that this probably wouldn't be the case, that we would be looking at several years before we trialed him off again. Totally not what I wanted to hear, but I understand it.
I took him to the beack with my brother this week just to try and do something fun. We were there about an hour before he said that he was too sick and wanted to go home. Sophia loved it! And she just rolled around in the sand and had a blast. Sam asked to stop for ice cream on the way home, which we did. He took a few licks and then he told me that he was too sick to eat it:-(