Saturday, June 25, 2011

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:-(

Thursday, June 23, 2011

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

Wednesday, June 22, 2011

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.

Monday, June 20, 2011

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....

Saturday, June 18, 2011

Our Garden...


Tuesday, June 14, 2011

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!!!

Friday, June 10, 2011

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:-)

Thursday, June 2, 2011

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:-)