Immunology update

Well I got a call from the immunologist today at Children's. I was suprised as I thought it would be anothe week or so before we would have the results of his blood work. I guess his got flagged because it was abnormal. Well the first time they did the immunogy work up his IgG levels were abnormally low, but then they were repeated, and they were in the bare minimum of the normal range, well this time they are even lower:( So they are really now thinking to do the IV IgG and want to get started as soon as possible. We will hear back from him on monday and by that point we should have a more definite plan. I am so concerned about the IV access and all the blood draws that will have to be done. My poor little pumpkin, but hopefully it will get better and we won't have to do this forever. The doctor is saying at least through next summer and then they will reevaluate the need at that point. He also has another ear infection and of course has diarrhea from the antibiotic. Now we are just praying he doesn't get the C. diff. colitis again. Poor little pumpkin

Lead level

Well at Sam's one year appt. he had the standard lead test done, and although his was in the normal range, it was on the high side of normal. And with all this stuff on the news about all the products coming from China with lead I am so anxious. Every single one of his bath toys is from China, not to mention almost all of the others, I saw a couple of his exact bibs be recalled this morning for lead!!! How awful. Matt is convinced that they are trying to kill our kids.
In other news, Sam picked up my stethescope one day after work last week. I had taken it out to clean it. Well he reached for it and I let him see him. He knew EXACTLY what to do with it!!! First he hung it around his neck just like his doctor does. Then he took it off his neck put it in his ears and reached out to listen to my heart with it!!! Do you think we have been to the doctor often, if my 13month old is already knowing what to do with a stethescope. My boy is so smart:)
He is walking more every day. And is so proud of himself. He is now taking 15 or so steps at a time, then falls to a crawl and finishes where he was going. He is getting so big. HE squats and then can stand.
Monday we go to Children's again to see the immunoligist. I am anxious to get his blood work results back and have a more set plan. He will get labs drawn that day and then probably two weeks later we will know what we will be doing. And then the following week we see the GI doctor again. I am not sure what will come of that appointment probably not a whole lot.

Is he sick again!?!

LEt me first start by saying we have the best doctor in the world. She called the other day just to check on Sam and to see when his next appointment was. Who takes the time to call the pt's to check in on them. Of course it is probably because she hasn't seen us in like two whole weeks!! That is pretty good for us, we are always there. But anyways Matt's Aunt Terri watched Sam today and said that he felt really hot at one point today but when I got there she said he felt much cooler. So I got home and checked his temperature and he was 100.5. I know not high but if he is "much cooler" what was it earlier. And why is he febrile at all? He was in airconditioning all day and today wasn't even that warm. He was very irritable at times this evening, he was perfectly fine and then would do his high pitched screaming, which he always did before when he had C diff colitis. Oh please no... I am praying and praying and praying as so many others are too that this is not the case, that he is just irritable because of some minor thing.

Long over due post

It has been quite a long time since I last wrote, and lots of things have happened. All the blood work that the Dr did got better the second time that she checked it, still a little abnormal but better. All the hepatitis tests came back negative so taht is good. Another good thing is that during this time they checked his antibodies to HepB and he has some!! I am so thankful. The ultrasound came back normal as well, there are no issues with the ducts or vessels, there are no blockages or swelling. So even though I am so happy that all this stuff is resolving, my big question is what caused it?
I have come to the conclusion on my own that Sam definitely does have something going on with his immune system. AFter all if whatever he just had was just a virus, then it shouldn't have caused all the issues it did. And also a normal healthy kid doesn't fight the same minor virus for two plus weeks..
In other news last week MAtt was driving home from work when the ball bearing joint or something like that broke. It then pulled the seal out of the transmission and he slid sideways in the road. We are so fortunate that he didn't get killed. His father was able to help him fix it but it was just another added expense.
Sam's PT came today and noticed that he had increased tone and posturing today. She throws those phrases out there and then wonders why I get a little anxious about it. I am not sure if it is because he is just getting over being sick and it is like a little set back, or if like she said some kids that she has seen they get increased tone when they are going to get sick. Regardless I am just praying he gets better

Playtime with Daddy

Well for some reason Sam has continued to run a fever and is puking more each day. I started giving him the reflux medicne last week, basically to appease the doctors I am convinced it isn't reflux, and so I don't really expect this to work. Considering we have been giving it to him for over a week and it is only getting worse I would think that I was correct. He seems to still have a lot of fun though. Last night he absolutely unconsolable for about 30 minutes, it is horrifying to knwo that your child is in pain and there isn't anything you can do for them.

My youth pastor asked me how he was doing today and I filled him in. And then we prayed for him together. It was so refreshing, and now I must wait for God to heal him.

Here are some pictures from playing with Daddy...

I.m It

So I am it! Stephanie (my23wktwins.blogspot.com) tagged me. So now I have to post 8 random things about myself...
1) I love chocolate chip cookie dough raw!! Matt used to bring it to me like that even when we
were dating.
2) I always thought that when I grew up I would be a missionary in Romania, and take care of
sick babies as a nurse
3) My favorite color is lime green
4) I have been to Germany, England, Switzerland, Austria, Mexico and of course the greatest
the USA. I want to go to Australia.
5) I have no knuckle in my thumb on my left hand, and am double jointed in my middle finger
6) I had a miscarriage, and I really feel like the baby was a boy, his name is Connor Matthew
7) My mom is the best person in the world, the one I admire and look up to the most
8) I love Julia Roberts, and all of her movies

Long DAy

Well yesterday Sam had an ultrasound of his liver. He did quite well with that, although he was starving becasue I couldn't feed him after midnight. They couldn't get over how cute he was in the radiology department. I don't blame them. And then all day I was sick to my stomach thinking that I was going to have to hold him down again for them to pick him some more for more blood. I had already done it the two previous days. So anyways mom/Meme to the rescue as usual. She met as at the hospital and she stayed with him while they poked and prodded. FIve different people and five pokes later they finally managed to get the blood they needed. The poor little guy had tape and bandaids everywhere. Then we came home and we took him to get icecream because I felt so bad about his day. He enjoyed it:) Then last night he spike another fever to 102.8, and was crabby, but he actaully only woke up once last night. I woke up this morning with this insane fear that something horrible had happened to him and he was too sick to even cry for us to come get him. WHen will this ever get better? I just keep praying that God will heal him or give the doctor's the wisdom they need to fix this.

Frustration and disappointment

Well it has been another rough day at the Weber home. After trying since last friday to not worry too much about Sam and not call the doctor about every little thing, I finally got a little anxious and called her. I told her I didn't really want to come in and that I just really wanted to talk with her. Well after I told her all that was going on she wanted to see him as well as order a lot of blood work. So last night Sam and I went up to the hospital and got his blood drawn. Then I worked last night (had a really rough night) and then brought him to see his Dr. this morning. Well the blood work came back abnormal because why would Sam have anything normal??? His liver function tests are elevated (something my dad noticed on saturday was that he was a little yellow looking), his white blood cell count is high (indicative of an infection), he has a red ear with fluid (not yet infected but almost), a sore in his mouth which is indicative of some sort of viral infection, and of course thrush in his mouth and a yeasty diaper rash. All this to say my little guy has not been a happy camper.

So anyways while we are at the Dr.'s they wanted to draw more blood to make sure he doesn't have hepatitis, and also to see if he has immunity to the Hep B vaccine he got (pray taht he does, he already isn't immune to so many of the vaccines). IT was horrible!!! I held him down and let people poke and prod him for nothing because they couldn't get his blood. My poor boy...
So of course he seems to be vomiting more than he had been and eating less. I just can't seem to get this guy healthy. The doctor wanted an ultrasound of his liver, which fortunately they were able to get emergently for tomorrow. She is also calling Children's to see what they want to do with this little boy of mine.

On a more positive note, I got the most beautiful letter from my brother Dennis in Iraq. He went on and on about encouraging me and trusting God, and how much he loved having me as his sister. It was so uplifting, at a time when I am feeling so defeated and sad. I just want them to figure out what is going on with my baby, I am so sick of picking and prodding and just finding more that isn't right.

He still manages to be happy at times, enjoys these pictures of Daddy and Sammy getting ready for bed...

Birthday Pics

Davis Farmland

We went with our friends today to a wonderful petting zoo/water park. The kids had a phenomenal time. The animals were so friendly and Sam couldn't get enough of them. The park was great, there was hand sanitizer around everywhere to use, tons of cool animals, lots of stuff to play with, and then there was the waterpark. And Sam is a little water bug. He couldn't get enough of the water spraying in his face or just slapping the water.

Our doctor's appt. to children's went well. They were wonderful to us this time. The immunolgist basically is preparing us to get IV IgG, basically IV antibodies every 3-4wks. Which is scary. It is essentially like you are giving blood products. The other thing about this is that if that is the route we have to go then he will need an IV every month and they have such a hard time getting his veins, and then also it is another day in the hospital each month.

On a brighter note, tomorrow is his birthday!!! I can't believe my baby is turing one.

Busy day

Tomorrow is the big day!!! I am praying that we will finally have some answers for all of this mess. Sam's PT from Early Intervention came today. She is quite impressed with how well he is doing with standing. We are still doing some strange things with our toes and sometimes our hands but for the most part with all of the correcting I think he is finally figuring out how to do it properly. We went swimming and he loved it but is now absolutely exhausted, as you can see from the way he passed out in his crib. Please pray for wisdom from the doctors tomorrow, and that everything goes smoothly.

BUSY BOY

Well we have had a great few days. It seems as though Sam's ears might finally be feeling better. Matt and I just realized a few minutes ago that Sam has not used the bathroom as much as usual, so maybe his intestines are healed too!!! Thank you God!!! He is so busy. He is pulling up on everything and letting go of everything and trying to balance himself standing. We were at my mom's today and he let the puppy out of her cage. At home we are constantly having to redirect him from playing with the phone and ripping any sort of paper that he can find. He has taken to throwing his toys, climbing into wherever he can fit, and trying to empty all of my cabinets. Thank God for child proof locks:)

We are still awaiting last weeks blood work and stool studies that they did. I know something came back a little bit irregular but I don't know what it means. And then some of the antibody titers to vaccines that he has gotten have come back normal, so I am assuming that that means that his immune system is functioning well with some things.

Recent pictures

Here are some recent pictures that I haven't had a chance to post yet They are from our trip to Kimball's with Matt's brother Tim, his wife and their two kids, and then obviouslly with Daddy. Sammy isn't quite sure about the bike helmet, but he likes the ride

4th of July

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Ear infection

Well we went to Children's yesterday and today to Sam's regular doctor. Children's ordered some more blood work and stool studies for some immune system deficiencies as well as some malabsorption syndromes. They are also testing for a rare form of Celiac disease, which they don't think is what he has but they want to rule it out. He also still has an ear infection in the left ear and has now started Zithromax. I am just praying that we don't get the colitis again. He was tested on friday and thank God he came back negative. We will go back to Children's next week for immunology/allergy