The last post.....

This blog is FULL! I guess I write more than I thought! So this is the last post here, but I have already started another blog, please continue to follow our story there, and continue to pray for our family. Thanks!!!
The new blog address: www.weberfamilylife2.blogspot.com

Happy Birthday my Sweet Doodle Bug

I can't believe my little miracle man is 5 today! I look back on all that we have experienced, all the sickness and fear, all the questions, and am reminded that God has walked with us through all of it. I am thanking God today for this amazing little boy, and for the priviledge I have had in being his mom. I have learned to be a better person, a better friend, and most importantly my faith has increased. Thank you God for this little boy, and thank you Sammy for being who you are. I LOVE YOU to infinity and beyond.........

Joint Hypermobility

I took Sophia to a rheumatologist on tuesday of this week. Because she has been having the joint pain for almost a year, and the orthopedic doctor does not believe it is structual we got referred to the rheumatologist. She was absolutely wonderful. She does not believe that Sophia has arthritis which is such an answer to prayer. There are a few things that are concerning to her though: the fact that she is stiff and the pain is worse in the morning, the fact that she had that undiagnosed eye pain in the same time frame as when the joint pain started (I guess this is very typical presentation of rheum. arthritis in someone her age). But her physical exam looks good in terms of saying that it is not arthritis. She did however say that she has some hypermobility of her joints. And therefore we will be going to physical therapy to see if we can strengthen her core muscles and help stabilize her joints better. We also will be going back to the pedi opthamologist to have a special test that is specific to rheum. arthritis too.
So we will just continue to pray that this heals and she feels better. Swimming this summer has seemed to help so hopefully between swimming and the PT we can strengthen her so much that we can resolve the pain.

Happy 4th of July weekend!

Happy Birthday America! It is certainly a blessing and a priviledge to live here. I am so thankful to have amazing doctors and health care, a wonderful job that helps to support our family. Freedom to worship my God and King. Freedom to wear what I want, go where I want, and do what I want. I am thankful that God has blessed me so abundantly and that I can proudly say that I am American. I am thankful that my children can go to school and playgrounds and play without fear. That we have enough food to eat, and clothing to wear, and a beautiful home to live in. I pray that in the coming year more Americans will remember that God is the founder of this country and that He has blessed us so abundantly.
A special thank you to all those military men and women out there fighting to keep America, America! God bless you and thank you from the bottom of my heart!!!

My brothers and sisters

Being from a big family is such a blessing to me. I am the oldest of six children, and have loved always having someone around. As each of us has gotten older we have had our differences of opinion, but at the end of the day we all love each other so much. As of right now, five out of the six of us are all living here in Massachusetts, but sadly by this fall that will all change. My brother DJ and his wife Lyndsea will continue to live in florida, my sister Deanna is moving to Texas, and my brother Dennis and his wife Johanna are moving to North Carolina. It will be hard to not have either of my brothers around, my kids love their uncles so much as do I. Each of my brothers has married and will probably be starting families of their own within a few years. My sister Denise is married to Ron, and they have three kids and one angle baby in heaven. My sister Doreen has a beautiful little boy named Darius, who has been on here before. All this to say I am just incredibly thankful for my siblings. God truly has blessed me tremendously with them.

This is the 6 of us in 2008 (shortly before I had Sophia), when Dennis was on a break from a tour of duty in Iraq

This is our family in 2009, at the graduation party that we had for my twin sister's Deanna and Doreen

And this is the 6 of us on thursday morning, prior to my doctors appointment and DJ's return flight to Florida.
As I have been going through my pictures I have realized we don't take enough pictures of the six of us together:-(

Rain rain go away

I feel like we have been cooped up forever! The kids are so cute, they keep syaing that it is going to rain for "40 days and 40 nights", I am so glad that they are remember their Bible stories and applying them to real life. I am obviously praying that we don't have rain for that long. A day or two here or there is not too big of a deal but a week on end, it is getting a little old.
We are doing well. I am so so thankful that Sam's burns are healing nicely. The blisters are still closed and I am of course praying that they stay that way. We will have to be extra careful if they do break open, as his infection risk is higher than normal. But so far so good, and he is doing really well with being careful of them.
I will be 25 weeks pregnant tomorrow! This little munchkin is growing and I feel like I am huge! I love it though! I am praying that the baby continues to grow really well and that I can make it to term this time. I love being pregnant and the miracle that God allows me to partake in, but my physical body doesn't like it at all.
We have a busy couple of days with four parties to go to this weekend. I will try to post some pics of this week tomorrow before the craziness of the weekend. Hoping and praying that you have a blessed day

Coordinate Care Clinic and Boo-boos

Sam had his follow up with the coordinated care clinic at MassGeneral yesterday. It was a good appointment. He is 42inches and 40lbs! He is finally growing well. As nervous as I was about the surgery in January, God really guided the decision and Sam is now thriving. We discussed school concerns and possible port placement. Also the relative long term implications of his medical care. We have a couple follow up next month and hopefully we will then have a pretty good idea of what we are looking at for at least the next year or two.
After that we went to visit my inlaws who are camping. The kids got to swim and play with their cousins. They made ooey gooey s'mores and had a blast. Then poor Sam touched a propane lantern and got second degree burns on his hand. He didn't cry at all, and I didn't realize how bad it was (it was dark) and so I just got a cool pack out of the cooler and put that on it. He didn't cry at all the poor little guy. Please say some prayers for him, that they will heal quickly and there will be no complications.

MassGeneral tomorrow

Sam's has an appointment with the Coordinated Care clinic at MassGeneral tomorrow. I am praying that they can shed some light on this chest pain issue. I did finally hear back from GI and he is recommending restarting an old med that he was on, and giving that a week to see if that helps. But I just don't feel like this is reflux. I feel like it is something new. I don't think reflux would affect so much of who is like this has...Praying for answers and for healing....

Our Garden...

IS GROWING FANTASTICALLY!!!!!

Chest Pain???

Well Sam officially has a new complaint. I am not quite sure what the problem is yet though. Last monday after his IVIG he started complaining that he had chest pain. I kind of was thinking that he bumped his chest (although there was no mark) or that it was some type of reaction to the IVIG. I kind of didn't worry too much about it on monday night when we got home, and then tuesday and wednesday he didn't complain about it. So then I kind of just stopped thinking about it. I saw his PCP over the weekend at the hospital on my way into work, and COMPLETELY forgot ot ask about it:-( She was off yesterday and because he is so not typical in his complaints, the other doctors in her office really don't know what to tell me. He complained again about it yesterday, and asked me to rub his chest. So now I am really stumped and praying that it is really nothign to be concerned about...talking to the doctor again tomorrow....
In other news our garden is growing!!! The kids and I are so excited. They run outside every day and want to see what is bigger from the day before. We can't wait to be able to actually pick veggies and fruit from it.
I am doing ok. My liver studies from last week have gotten a little more elevated:-( This pregnancy I am really realizing how God truly is in control regardless of what the medical professionals say.
Last week wednesday after preschool a bunch of us mom's went to Dunn's Pond. There were 9 moms, and 18+ kids! It was a lot of fun. The kids had so much fun. My two absolutely love the water. I foresee a lot of swimming this summer, as long as I am not on bedrest.

Blogger issues???

Anyone else out there having problems with blogger? I can't comment anywhere and have been emailed by people saying that they weren't able to post a comment on my blog. Does anyone know what is going on with that?
We have had a crazy few days. After Sam's graduation on friday, I started my four nights in a row at the hospital. I am completely 100% exhausted and can't wait to sleep today. I am so so blessed by such wonderful friends that come and take the kiddos so I can sleep! They actually had a sleep over last night at a friend's house, and they are staying there throughout this morning so I can sleep after work.
I am feeling pretty crummy the last few days but I am not sure if it is related to working so much with so little sleep, or if there is something going on pregnancy wise. I did have my liver tests drawn last week in Boston and they are up a little more than they had been the week before:-( Not sure if it is a significant enough increase to be concerned or not. Praying that it isn't.
PRAYER REQUEST: A co-worker of mine has a daughter named Ashley who was pregnant. Ashley delivered her precious baby girl the other day, at 27wks, the baby is 2lb 4.7oz and has been doing well. Ashley was very sick with pre-eclampsia and HELLP syndrome (like I have been previously) can you please lift up this family in your prayers? Thank you so much!!!

SUYL: Special Needs Kids

Over on Kellys Korner Blog, they are doing a link up of kids/adults with special needs. Kelly does a wonderful job linking people together who are sharing similar situations.
My story with Sam starts with an extremely complicated pregnancy that ended with him being delivered early. After our NICU stay (I am a nurse) I just knew that there was something wrong with him. His first year of life was spent in and out of the hospital with many infections and difficulties clearing them up. At 9months they said he had the immune deficiency, at 13months we started IVIG. At that time he started to do really well. When he was 2 we started having lots of GI issues, and bloody stools. He was diagnosed with irritable bowel syndrome (although this diagnosis) I am not sure is accurate. Shortly after that he was diagnosed with a bleeding disorder called platelet agreggation dysfunction. Essentially his platelets don't work well, he is a high risk for hemorrhage. He randomly bleeds, but we are praising God that he hasn't had a big bleed in quite a while.
He is a happy beautiful loving little boy. I am so thankful for him. For the journey we are on, it is making us all better people. I am anxious as we look forward to him going to school in the fall, and all the uncertainties medically. But we are happily moving forward:-) If you are curious about any of his medical issues, I have TAGS on the sidebar of my blog such as IVIG, hematology, immunology etc.
If you have hopped over from Kelly's welcome, glad you are here. I would love to hear from you:-)

Friendly Farm

Sam had his last field trip of the school year yesterday. We went to this great little farm that had lots of farm animals to touch and hold. He had so much fun. It was an exceedingly hot day, and I (apparently in my nurse mode) was so nervous that the kids were going to get dehydrated and overheated but thankfully they all did ok.
I am feeling a little better each day. I have made lots of progress in the last few days getting into the right place since this pregnancy is so high risk. And the bonus is I get to have another ultrasound next week:-)

Memorial Day and a Baby Update

Well I got discharged from the hospital, with instructions to do as little as possible, until I felt better. I certainly feel better today than I did on friday but about the same that I felt on saturday and sunday. Maybe not quite so tired. I guess that that is a good sign. Since I don't feel worse, then it probably isn't progressing HELLP syndrome.
My brother and his wife took the kids to the Memorial Day parade today and the kids had a blast. I am so thankful that they still got to go even though I couldn't take them. We just essentially spent the whole afternoon and evening at my parents today. I sat in a lounge chair in the shade and watched the kiddos playing. It was a perfect day with lots of good food, family and friends. I am so thankful that we live in an age where people love and support our military and the sacrifices that they make for us!!!

PRAYERS please

Goodness, this is going to be a quick info filled update. Currently I am sitting in the hospital on bedrest. I called the hospital yesterday stating that I was having diarrhea and vomting and that I had a bad headache. They had me come in and did labs mostly just to appease me. But the labs came back bad, and then I had a big discussion with the doctor about how the baby isn't viable yet, and if I am already getting PRe-eclampsia or HELLP, the only resolution is to terminate this pregnancy. We have notified our prayer warriors and people have been praying. I ask that you do too. This mornign my liver tests were better than last night, but still not normal. And my platelet counts had dropped by about 30 points, but are still within the normal range. So at this point they are thinking that it probably isn't HELLP syndrome, but we will continue to watch the labs. Please be praying for this little miracle baby, and for our whole family. For wisdom for the doctors and for us. And for this baby to defy all the odds, and at the end of this, for not one person to deny how amazing God is:-)