Tuesday, November 27, 2012
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 :-)
Monday, November 26, 2012
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....
Sunday, November 25, 2012
Oh Christmas tree Oh Christmas tree
Friday, November 23, 2012
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....
Tuesday, November 20, 2012
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!!!
Monday, November 19, 2012
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...
Saturday, November 17, 2012
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....
Thursday, November 15, 2012
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.:-)
Wednesday, November 14, 2012
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....
Thursday, November 8, 2012
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.