Tuesday, November 30, 2010

Christmas Lights

For as long as I can remember we have been going to Littleton Mass the sunday after thanksgiving to look at Christmas lights. It is a private home, but the people go all out with their decorations. They are not like the typical store bought stuff, alot of their decorations are hand made and painted. They do have some store stuff too, but it is just a really cool place to take the kids. I am thankful that my kids get to have this tradition. It is so fun to watch their faces light up when all around them suddenly is a sea of lights.

Papa's Birthday

The man of the hour

My niece welcoming him to the party

Sam and my niece Ava cuddling with Papa

(not the right order) this is when he first arrived

Greeting my nephew Jacob

This is a perfect example of my father in law. Just prior to him walking in the door Sophia got her fingers shut in the hinge side of a door:-( It was terrible, and I was so so thankful that her fingers weren't broken. She desperately wanted her Papa because she knew he would make her feel better, and he did:-)

Sleeping beauty sleeping on her daddy

The cake:-)

Blowing out the candles with his grandchildren's assistance

The photo book we made

The whole Weber family

We also got to celebrate my wonderful father in law this past weekend. This man is truly wonderful and I am so blessed to be a part of his family. He is kind and compassionate, loving, funny, hard working, dedicated, selfless, and most importanly a Godly man.
I can't even begin to tell you how much he has helped us and been there for us through all kinds of things. If he is needed he is there. He has been so helpful with so many household projects, and has also been willing to go to work a few minutes late to help us with childcare several times.
So this weekend we got to celebrate him and his truly amazing "Legacy of Love." Matt's brother Tim and his family along with ours made book for him entitled the legacy of love. It was one of those photo books. He seemed as though he really enjoyed it. I am thankful that I could take part in celebrating him. My sister in law Tracy planned the whole party. She is very talented at organizing and planning (something I am truly terrible at):-) So I was so thankful that she did this whole party, and just let me know what I needed. It went very smoothly and I think everyone enjoyed themselves. Thanks Tracy! You did a great job!!!

The Nutcracker

Friday night we took the kids into the "Hanover Theater" in Worcestor. I had never been there and wasn't sure quite what to expect but it was wonderful. Sophia had a wonderful time, and couldn't quite contain her excitement with the "beautiful tutu's" and "beautiful ballerina's." She couldn't quite keep her voice down with each twirl, she very loudly said "Mommy look at...." It was so wonderful to see her joy and excitement. I think I may have a little dancer on my hands.
Sam also enjoyed it, but not to the same extent. He even said "yes I liked it but why was it so long?" He enjoyed the part where the Christmas tree gets huge along with the other things that became very large.

Saturday, November 27, 2010

Sleepover at Mass Eye and Ear

We are leaving in a few minutes for another sleep study. Please say some prayers that they are able to see the struggles Sammy is having while asleep so that they can determine what to do to fix it.
We took the kids to the Nutcracker last night. They had a great time. Today we had my father in law's 60th birthday, tonight the sleep study, and tomorrow a big Christmas light display. Phew busy weekend! But again please pray for Sam's sleep study tonight

Friday, November 26, 2010

More about Thanksgiving

Auntie Johanna and Sophia

Sammy eating cranberry sauce (yes he ate the whole bowl)

Auntie Deanna and Sam

My two brothers carving the turkey, Dennis and DJ

Deanna and Doreen, the twins:-)

Doreen and Matt

Sam and Uncle Dennis

Sophia and Uncle DJ

We got to go to my mom's this year. We had 14 people. It was the perfect size. The kids were the only kids there so they were spoiled which of course they love. My brother DJ came up from Florida which was fabulous. My brother Dennis and his wife Johanna (along with her parents and sister), my sister's Deanna and Doreen and my parents. It was awesome!
The food came out really well. My brothers and father fried the turkey and it was delicious. We had sweet potato casserole, broccoli casserole, squash, green bean casserole, cranberry sauce, pumpkin rolls, corn bread, mashed potatoes, rolls, and stuffing (although we forgot to serve it!) It was all delicious:-)
Thanksgiving is a time to be thankful. And at this time of year I am reminded how blessed I am. Both Matt and I have dependable jobs that provide for us, we have an amazing church and church family that is so wonderful and supportive, we have family that is so so helpful and loving, I have two amazing children. We have wonderful doctors taking care of Sam, we have wonderful neighbors. And most importantly we have a God who loves us unconditionally and who supplies all our needs.
It is easy to get caught up in the stress of having a sick child, or in the disappointment of what we would like to see happen, or what we wish we had and don't. But if you take a step back, and look around there is such tremendous provision from God. Yeah maybe we wish we had more of something, or that someone was a little different, or that Sam wasn't sick, but in the place of those wishes we have been given something we wouldn't otherwise have. My faith has certainly been stretched, my heart has been broken and is being reshaped. My mind has been in turmoil, but God gives me rest. My body has been in pain, but God comforts me. I have been filled with fear, but I KNOW that God is in charge and that takes the fear. Each trial we face brings us to a deeper relationship with our maker. And although I am not to the point where I can say I am glad that Sammy is sick, I can say that I am thankful for the places it has brought me.
WE go into MassGeneral tomorrow for another sleep study. And although this sounds weird I hope he has a tough night sleeping, so that they can see how much he struggles so often at home. So please keep him in your prayers. Pray for his doctors that they have wisdome to help him, and for us that we make the right decisions regarding his care.

Thursday, November 25, 2010

Happy Thanksgiving

Happy Thanksgiving from our little turkeys to yours:-) Will post more tomorrow:-)

Trying to have the right attitude

So I am struggling with a bad attitude this week. :-( I was so hurt and disappointed when we asked someone for help this week, so that we would have someone to watch Sophia while Sammy was in the hospital, and when this person said no, it made me furious, not to mention was so hurtful. I keep telling myself not to question others choices, but it is so hard sometimes. I know that if someone said to me could you watch my baby, while my older child is in the hospital for a couple hours, I would do whatever I possibly could to help. So it is hard for me to understand when people won't help when it is so obviously needed. But all that aside this has reminded me this week that God has filled my life with some amazing friends and family that are willing to help. And I am so incredibly blessed.
In His perfect timing as always, after we learned that we still needed to find someone, a friend called and heard how upset I was by my voice, and said hey why don't I take her. What a blessing! And so it was perfect. Sophia had a wonderful time, and I was able to not be concerned about her knowing that she was being loved on completely.
On this journey with Sam, we have just been blessed so richly wish so many people that give of themselves so selflessly. Another friend when she heard I was looking for someone for Sophia, also offered. God has filled our lives with some amazingly wonderful people, who love us and are willing to do whatever they can to help. I am just so touched by so many. And I have to focus on that, I just have to...
Onto the rest of the story, so Sammy and I went up to the hospital (which by the way, since it was our local hospital and our pediatrician) he was super excited about, another tremendous blessing:-) Anyways we got up there and he got all hooked up to the monitors and we watched movies. He had more than 40 alarms in about a half hour time frame! I said to the pediatrician in the morning, see this is why I don't sleep! He had 3 episodes where he stopped breathing for more than 20seconds, and many more episodes where it was less than twenty seconds. The doctor seemed suprised at how many there were. She asked when we would be going back to see his doctor at Childrens and when she heard that it wasn't for two weeks, she decided she was going to contact him herself. Not sure what her thoughts/plans are....I am kind of hoping that we have a concrete plan in place by next week. I am praying that sometime soon we will be able to sleep at night without having our hand on his chest to make sure he is still breathing.

Monday, November 22, 2010

The waiting...

After a very stressful last four nights, of Sam having extreme difficulty breathing I am waiting anxiously for doctors to call me back. I have spoken with nurses and with our primary but am now waiting for the pulmonologist and ENT. I just am so tired of him having to struggle, how can he be healthy if he can't even get a restful night sleep. I am not sure where we go from here. Matt and I have discussed calling 911 when it happens so it is witnessed and documented by someone else professionally, we have talked about the ER, and also about video taping it when it happens to show to his doctors so that they see how much he is struggling. But today we are just waiting. Waiting for answers.....

Saturday, November 20, 2010

Rough Days

This past week has been really rough:-( I try not to focus on the negative, but sometimes especially when I am tired I get overwhelmed. The last 3 days especially have been terrible at night with Sam. Sam has been struggling so much to breathe while he is sleeping. It is so horrifying to watch him struggle just to breathe. Last night I was at our church helping make pumpkin rolls until 2 in the morning, Matt had kept the phone with him just for in case he needed to call 911, if he couldn't help Sam!!! He never actually turned blue (like last winter) but he turned red and then really pale.
I slept with Sammy the last several nights with my hand on his chest, just to make sure he did continue to breathe. Early this morning for about an hour before he woke up I layed there with the sunlight streaming in, and just watched the struggle, and watched the multiple 10+ second pauses in his breathing!
This is SO HARD!!! I am so tired, and frustrated and feeling like there is nothing that I can do to help him. I want this struggling to breath to be over. I want him to go to bed at night, sleep well, and wake up feeling fully refreshed in the morning. I don't want the constant fear of the what if's that we have been dealing with this week.
I am ready to beg for the tonsils and adenoids to come out. If that is going to help him, then I will get over my terrifying fear. I know that God is here with us, that God's plan for Sam and for us is truly perfect, but what I don't know is what that plan is, and I am struggling to deal with not knowing.
These photos were taken by a wonderful photographer. If you are local and want someone to do amazing photos for you that just catches the essence of each person just go to www.sgrahamphotography.com

Tuesday, November 16, 2010

More stress....

I am trying to remain positive lately but sometimes I just get so overwhelmed. There is so much STUFF going on right now. And I feel like I am sinking underneath it all. Please just pray for our family, for HUGE decisions that have to be made, for Sam's health and decisions that need to be made regarding him, for my back/job situation, and that I have the wisdom/strength to make the right decisions.
Sam has been "a little off all weekend" with intermittent low grade temps, fussy, and sleeping a lot more than normal. Now this totally could be nothing but it could also could be him getting sick, just never know with Sam. I finally heard back from pulmonology yesterday. I had been hoping that since he had wanted to see him in six weeks after "the urgent sleep study" that we wouldn't have to see him until january, because that is when the "urgent sleep study" is. So that gives us appt's next month in Coord. Care Clinic, with GI, immunology, ENT, pulmonology, his primary, and IVIG x2. It's going to be hectic with the holidays.
We went out to eat on saturday with some friends of ours. It was so fun! The kids behaved really well, and the food was fabulous:-) On sunday we had family portraits taken by a fabulous photographer, I can't wait to show them to you. She also did some of just Sammy too. I think they are going to be amazing.:-)
God spoke to me so clearly on sunday at church. Our Pastor preached about miracles, and being faithful and continuing to trust God with all your needs. A big part of the sermon was about "The Widows olive oil" in 2 Kings 2:4. Here this woman had nothing and creditors were coming to take her children as slaves to repay a debt. She cried out for help, and God heard her prayer. He provided enough oil for her to pay her debt and to live off of.
Our Pastor said "the miracle is in the house." I am believing for that miracle in my house and in my life. I know God is able to do exceedingly abundantly above all expectations and I am eagerly awaiting His answer to my prayers.

Saturday, November 13, 2010

Just Cuteness

My friend made this outfit and I LOVE it!!! And Sophia does too:-)