Focusing on the positive

I am overwhelmed but I am thankful for an amazing immunologist I am scared of how the first treatment will go but I am praising God that we have insurance to cover it I am exhausted because Preston is sick AGAIN, but I am blessed to be home and caring for him I am sad that I have another immuno compromised child but I am thankful that we know what is wrong and we can treat it. I am a sinner but am so thankful that God forgives me over and over again I am stressed, but am so thankful to have such an amazing support system that loves us so much I am just praising God for these past few years, I am not going to lie they have been tremendously difficult and sometimes I have gotten angry and asked God why do my babies have to suffer so much. And then He gently reminds me of His sacrifice for me. He reminds me of the forgiveness that I didn't deserve. He reminds me that He doesn't want my children to suffer, but that due to the sinful nature of man this is what has happened. He has blessed us so amazingly in these last few years. He has provided for us financially, He has given us unbelievably wonderful friends/family. He has answered prayers before they were uttered. I am praising God tonight, becuase I know He is so faithful, and no matter what tomorrow holds, HE IS ALL WE NEED!!! He has been so faithful. He is always there! This is one of my favorite songs ever! Please listen :-)

IVIG it is for Preston

Found out today that Preston will be needing IVIG. I knew that we were probably headed down this road but it is now official. I am overwhelmed and wishing that this wasn't the case but unfortunately that isn't the case. I will be scheduling the first infusion on wednesday....

Oh Christmas Tree, oh Christmas tree,,,

Oh Christmas tree Oh Christmas tree

How richly God has decked thee

Oh Christmas tree Oh Christmas tree

How richly God has decked thee

though bidst us true and faithful be

And trust in God unchangingly

Oh Christmas tree! Oh Christmas tree!

How richly God has decked thee

We have gone to cut down our tree for the last several years. We had gone to a few different places and had continued on our search to find "our place" to start a family tradition of getting a yearly tree. Last year we went to a place called Pumpkin Hill Farm. We really liked it, and returned this year. It was quite chilly but we had fun. The kids immediately picked the tree that we chose together! I couldn't believe they agreed on the same tree. :-)

A thankful heart

God has really been speaking to my heart in the last month or so.... It has been so easy to get stressed out and anxious about all that is going on with this handsome little guy of mine....

But as I have kept giving him back to God and focusing on the blessing He has given us God keeps reminding me of the past two plus years... - when I was 19wks pregnant with Preston the doctor's words "the baby is not viable, so we will be saving you." And my Pastor just showing up in the midst of that situation and praying with me, and the peace God gave me... - the anxiety I had about the preganancy and being put on bedrest and not being able to work, and God allowing me to work until four days before P was born. -the computor that showed up on our door step when we were in desperate need of one, with no strings attached -when Sam got his eosinophilic colitis diagnosis, being so overwhelmed, and having an amazing friend start helping me with the research process of cooking for him, and then stocking some things in my freezer for him -the seemingly endless need of help with the kids when there are doctors appointments, IVIG, back issues, etc etc and there seems to always be someone available - the wonderful past year in which our Auntie TeeTee got to be with us unexpectedly.

-the finances have been tight and for some reason (GOD!) my MIL sent home a bag of treats with Matt one night after church. She had no idea that I was anxious because I didn't have snacks to pack in Sam's lunch for school the next day and couldnt get any groceries for two more days.... And she has continued to bless us with snacks! It has been so wonderful -I have been sad with my siblings moving away, sad that my kids wouldn't have all their aunts and uncles around, but I am praising God that He has filled that need with some wonderful Christian aunties and uncles to love and cherish these miracles of mine. -for the love and support that so many friends and family have shown us over and over and over again. I have really struggled as a mom with all we have gone through with Preston. It has been so overwhelming going down this road with another child, and realizing I just can't do it. But in every circumstance God has responded that I don't have to and that He will. He has answered prayers before I have uttered them, He has provided before I knew there was a need, He has blessed in amazing ways. As we continue on this journey with our sick boys, I am reminded over and over and over again of God's love for us, and for His provision in our lives. Even this past august when I hurt my back at work again, I was so upset and frustrated when I started going through the pain and discomfort and inability to care for my kids. The finances are getting tighter. But if I hadn't come out of work then it would have been much more difficult with Preston in the hospital. I feel like this past couple of years has been a true testimony to the song that Laura Story wrote called "Blessing." One of my favorite verses states: "Cause what if Your blessings come through raindrops What if Your healing comes through tears What if a thousand sleepless nights Are what it takes to know You're near What if trials of this life are Your mercies in disguise" This verse speaks to our life right now. We have had lots of tears, and TONS of sleepless nights:-), but in each and every situation God has shown Himself, in new ways. I am thankful for these trials, for the faith that I am gaining because of them, for the faith my children are gaining because of them. God is carrying us through these life situations and there is no place I would rather be.

So proud!!!

Sammy and I were working on a Thanksgiving craft to give to both sets of grandparents on thanksgiving. He was quickly making his list of what he is thankful for in order to write them down on the craft once it is done. He flew threw making this list. And I am so blessed to know that He has his thankfulness for God our creator as the top of his list! I couldn't feel more proud of him! He has had so many medical struggles, and he has always remained sweet and kind and compassionate. He is determined, and silly. He is a wonderful friend to the people around him. He is a wonderful big brother and son. I am so blessed to call him my boy!!!

It was 24 degrees outside when we woke up this morning. It is hard to believe that we were playing at the playground last week with light sweatshirts, and then just shirts on. We had a wonderful time last week playing with some friends. Their son Roberto is such a climber! I am thankful that my kiddos aren't quite as fearless as him! :-) Preston had a blast climbing through the tunnels. Sophia is in a stage of really just liking to run free, and wild. She likes to let her hair fly out behind her:-)

Rough Day

Today was a pretty rough day. After Preston has been relatively crabby the last couple of days, I was concerned that maybe the intestinal infection had gotten bad again. I am still unsure as I have not heard back about the stool studies. But poor munchkin has been pretty irritable and has had some low grade fevers. There has been a situation going on in my church that has been very hurtful for a long time. I initially tried to resolve the issue by talking to the person who was most involved in the situation and essentially got no where. So this past sunday when Sophia wouldn't go to her class I pulled the teacher aside and asked for her advise/assistance/recommendation in what the next step should be. The teacher said that it wasn't only Sophia that was affected and that she would try to take care of it. Well that has just opened a huge can of worms. I don't want to go into too much detail, but there is a lot of hurt and emotions going on and I don't know how this situation will possibly be resolved. If you could please pray for Godly wisdom, and for all attitudes involved, including my own that would be wonderful. Thank you! In other news I got to spend most of the day with my little nephew Darius. He and Preston are only eight months apart, so they are so fun to watch together. Darius is such a peanut. He is actually almost two pounds less than Preston, but a couple inches taller. It was quite the busy day with those two, Sophia didn't have school, and Sam had only half a day. I think we have some kind of respiratory virus in our house. Preston has a little bit of mucous, as does Sophia. And I have a cough. Praying that everyone feels better soon! I have been doing a daily post on facebook about what I am thankful for and it has just been so wonderful. Especially after a day like today, it is easy to get sucked into being negative and upset. But in choosing to be thankful God takes that burden away. He surrounds you with His light and grace. I can't help but smile, I can't help but feel hope and strength. God's got this (no matter what THIS is)!!! I am human, and I screw up but praise God He forgives us and lets us start over...

Immunology update..... and world prematurity day

So we have gotten multiple things back for Preston's testing. Although I have expected it since he got meningitis, it is still a little overwhelming to actually hear it officially that I have another child that has some level of immunodeficiency. At this point we know that IgG levels are low, we don't have the other immunoglobulin levels back yet, however last month the IgA and IgM were low as well. He also has not mounted a decent response to some of his vaccines which is certainly scary to me. We are also awaiting his T cell and B cell counts. His immunologist already had me do the consent for IVIG, and since we have already been down this road before I know what we are in for. But at this stage of the game I am feeling overwhelmed. I absolutely know without a doubt that God is completely in control of this situation, and He is the author of this book, He knows each and every chapter and page, He has the perfect ending planned. Who I am to question it? So today I am just trying to focus on the knowledge that God's plan is absolutely perfect and that He has got this in His hands. Today is also World Prematurity day. This is something near and dear to my heart. I longed for full term healthy babies that came home with me on the day of my discharge, I unfortunately was not allowed that. But I was allowed to witness God's most innocent creation thrive and grow. As a nurse I have taken care of micropreemies, and delivered preemies, and as a mom I have taken care of my three little preemies. There are so many misconceptions and thoughts about what causes prematurity. There are people out there that think that the mom didn't care for herself well enough, or that she was doing things wrong. But in all actuality perfectly healthy people have complication filled pregnancies and we don't know why. I am a healthy person, but cannot carry a pregnancy to term. With each of my pregnancies I started contracting around 26 weeks, but praise God He kept my precious miracles in for longer. Tonight I ask you to pray for all preemies and for their families, caretakes, and anyone who has any contact with them, around the world for their health, and for organizations like the March of Dimes to continue to strive towards ending this terrible heartache of babies born too soon. For now I leave you with a picture of each of my tiny little miracles, Sam, then Sophia and then Preston. And then I will end with a picture of Sam at the age of 13.5 months when we first started IVIG. Preston will likely be about fifteen months when we start him I think....

And here is Sam's first adventure with IVIG. Wow he was such a ham!!! :-) I am praying that Preston will also be able to easily tolerate the IV attempts, the side affects, the being unable to get around much because of the IV, etc. I am praying for our nurses and staff. God's got this! We will set up the official start day the monday after thanksgiving.

Out of the mouths of babes....

My children are so kind and compassionate. When they pray at night they pray for sick or injured people. They pray for kids that don't have toys, they pray for people to have warm blankies. Sophia has even taken to saying "Mommy I want you to give this toy to the kids who don't have any toys..." Last night when she came home from her little Rainbows group at church, she had had her teacher write on her paper a prayer request and it said "Please heal my baby brother." It brought tears to my eyes, I am so thankful that my children know the ONE who is all in all, who heals, who strengthens, who carries, who supplies, who blesses and who forgives. What an amazing blessing to know that my little girl is already grasping who God is in such an amazing way.:-)

Immunology update and Oreos

So last friday I took Preston back into Children's to follow up with the immunologist. I am so thankful to have this specific doctor on our team. I certainly wish that we weren't seeing him for ANOTHER one of my children, but I am praising God that we have the ability to see someone so knowledgeable about immunodeficiency in kids. Oh my gosh he is growing so well! He weighed 21lb 11oz and was 30.5 inches long!!! This past year has certainly been a faith building journey for me as I have seen my baby struggle so much. In so many instances throughout this last year, God has answered so many prayers, that I never even asked Him to. I can go on and on about how He has blessed us this year, but for today I am just praising God that Preston is here, he is happy and he is growing well. I obviously pray for his health and wish that he didn't get so ill so fast. But that is not God's plan, and I just have to keep saying His plan not mine! They drew lots of lab work, they are drawing labs to determine if his body made any response to all the vaccines that he has gotten as an infant, as he hadn't made any last month. They drew labs to see if his immunoglobulin levels had risen to normal levels, and then they also checked to see if his T cells and B cells had gotten to a normal level. We have lots we are praying about and waiting for answers about. We went over the IVIG and Preston and I went and toured the infusion center. It was nice and the nurses/staff were wonderful. I am still hoping we don't have to go that route but it was good to lay my eyes on it. So as a reward for my little guy I let him have an oreo! And boy did he love it....

Playing Catch up

Excuse the length of this post but it has been a roller coast ride the last couple of weeks.... My brother Dennis and his wife Johanna made a surprise trip up here and we were so excited. They came for a week and it was wonderful. These pics are from the day they arrived. They couldn't believe how big Preston had gotten.

We spent lots of time hanging out together as a family while Dennis, Johanna and their dog Sampson were here. They even came out with the kids when they were dressed up. Sam said " I want to be a real Army man like Uncle Dennis", Sophia was Rapunzel and Preston was a chicken:-)

I was so sad to see Dennis, Johanna and Sampson leave again. I am disappointed that my ENTIRE family will be together this year in North Carolina except for Matt, the kids and I:-( I definitely wish the finances were there in order for us to make the drive...

I have been trying to finish this post for days. Things are crazy. Hopefully this week:-)