Monday, July 25, 2016
Sometime soon I hope to be able to blog again daily. I miss documenting this journey in such a tangible way. Our lives are so incredibly blessed and I love being able to look back on our journey and see how far God has brought us. When I am discouraged and overwhelmed it is so nice to know where we have been and where God is bringing us. It feels as though every year one of our munchkins has significant struggles. This year has certainly been a struggle for Preston. He has had four admissions to the hospital and multiple emergency room trips. Currently we are wondering if there is some type of undiagnosed metabolic disorder with him. Again something scary but knowing that our God is with us is such an incredible blessing. Preston has developed weakness and fatigue that has been progressing over the last several months. We are unsure of the cause. But it has been sad and at times scary to watch. Our trip to the doctor today revealed that he hasn't lost any weight which is certainly reason to celebrate these days. He is such a little love bug and I hate to see him missing out on so much activity wise. Praying for answers sometime soon. Our house here in Massachusetts is on the market and I am really looking forward to not having to be straddling between two different parts of the country. Matt has been working so hard on this house and has done incredible work. I can't wait for him to not constantly have a project to work on in the house once he gets home from work. Samuel and Sophia will be entering fifth and third grades respectively this year! I can't even believe I have a ten year old and an eight year old!!! They both are such incredible kids. I am just so blessed to be able to call myself their mom. Samuel is really enjoying history and we are trying our best to let him experience as much historical stuff as we can. We have taken him to the Statue of Liberty, Ellis Island, Plimoth Plantation, and Mayflower II in the last few months, and Lord willing will get to take him to several more places in the upcoming months. Sophia is starting to enjoy reading which I am thrilled about as it has been a struggle for her and now she is starting to actually like it. She continues to make friends where ever she goes, and is such a compassionate little girl. We recently were at the playground and there was a little girl with physical disabilities there, and Sophia just went right up to her and played with her, my sweet little lady. Paisley is nearly three and is in the process of potty training. She is a happy little thing, with a side of sassy! She loves all things girly, from baby dolls, to princesses, to jewelry and pocket books. We jokingly call her a little bag lady some days. I am just so blessed! PS for the life of me I cant figure out how to get pictures to come on here from my phone, any advice?
Saturday, May 28, 2016
Where we are living in North Carolina where are blessed to be near a fantastic playground, splash pad and sports complex. The kids had such a wonderful time today. They made new friends and just enjoyed the gorgeous weather. We have the tropical storm coming through soon so we are enjoying the sun while we have it
Wow has our life changed since I have last written. We now have three children on immunoglobulin replacement therapy, the kids and I have moved to NC, and my husband remains in Massachusetts still. But prayerfully that separation will be coming to an end shortly. Its been so long since I have written I will write a bit about each child individually to update. My Super Sammy will be 10 this year! I can't even believe it. He is an absolutely incredible kid. He is so smart, kind, sensitive, hard working, and funny. He has amazing manners, and thinks nothing of helping anyone who needs assistance. Teachers and adults from church and other areas comment about how polite and kind he is. Health wise Sam has done very well this year, he still is dealing with the primary immunodeficiency and getting immunoglobulin replacement therapy weekly, but he takes it all in a stride. The other issue he is currently battling is eosinophilic colitis, which has been a bit more challenging to deal with as he has tough time with eating. But this too he just deals with with a smile, He is in fourth grade now and has straight A's. He absolutely loves history (like his daddy) and science (like his mom). He loves his siblings and his family wholeheartedly and is just an all around awesome kid. We are not currently doing any sports due to risk of bleeding, but we are hoping to get him involved in swim team this year. My sweet Sophia Grace is currently 8 and is doing fabulously. I think that sometimes being our healthy kid is hard for her. I feel as though she feels "left out" or something. But she is so silly, giggly and all around girly. She loves dresses, and lip gloss, singing and gymnastics. We have enrolled her in a new gym here in NC and she is working so incredibly hard to grow in her skills. I am always blown away by her sheer strength and will power to stick things through. She is such a social butterfly and has many friends where ever she goes. She is quite the helper when it comes to her siblings, especially with Paisley. She is my kiddo that is picking up the southern accent and I love it. Sophia is in second grade, and was really nervous starting out in a new school. She has done very well, although she struggles a little bit with reading. She has many friends and earns lots of rewards for her great behavior. Preston, affectionately called Mr. P these days has been struggling for most of this year. He is four and a half, and has had numerous illnesses and reactions since the fall. He has started preschool and is able to ,go typically three days a week. Here in NC the program is a five day program but he just doesn't have the stamina to be able to do that. He has really taken a liking to Mickey Mouse Club house, and Jake and the Neverland Pirates this year. Sadly this year his immune deficiency as well as digestive issues have certainly held him back from being a typical nearly five year old. In comparison to his cousins/friends of the same age we have definitely noticed a lack of energy and strength. But he is an incredibly happy snuggly silly little guy. He loves playdough, laughing, reading, and coloring. He loves stickers and playing with Paisley. When he is feeling well, he is a fearless little guy who loves jumping, skipping and having fun. Little Miss Paisley will be three this summer. She is a little spit fire and certainly has no problem speaking her mind. She speaks constantly. Loves her baby dolls, coloring, running, playing in the water, and Doc McStuffins and Daniel Tiger. Her weekly infusions have proven to be very challenging for her and for me. It is really hard because she begs you to stop and cries and doesn't understand why we are doing it. She is thriving with her speech, and loves to sing. It is so beautiful to hear her singing Jesus loves me, You are my sunshine, or Tell me why. She walks around humming with her baby dolls and that is so sweet too. She loves her special formula and acts like it is a special treat and loves to drink it. She also has a significant attachment to her pacifier which has proven to be such a challenge. I am hoping to keep a better blog now and keep the updates coming, in the coming weeks I will be uploading pictures of our recent adventures.