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.
Sunday, July 27, 2014
Oh my goodness can't believe how long it has been since I have blogged! I can't even begin explain the craziness that was this winter. I will do a more lengthy post at some point soon but the big stuff is that Sam was diagnosed with an eosinophilic colitis again, this winter. He has had tons of other symptoms that we are still trying to work through, and missed the last several weeks of school. We were so blessed to have a wonderful tutor that kept him up to date and he continue on to the third grade. Sophia is now six and is reading so well now! My mom and dad have been so fabulous and have helped us pay for Sophia to take gymnastics. She does phenomenally well and is advancing quickly. Preston will be three the end of August and is doing well too. He is continuing to receive IVIG and we are thrilled to be doing it at our local hospital since march which makes life so much easier than trekking into Boston all the time. Sam switched to subQ infusions of the immunoglobulins this winter due to lots of complications. And little miss Paisley is going to be ONE on August 9th! This year has flown by with her. She had another incident of respiratory arrest, actually several in between thanksgiving and February. We had an apnea monitor and it was alarming multiple times a day. Her last admission to the PICU was in February. At that time they stated that her "ALTE" (apparent life threatening events) were caused by severe reflux. She was put on multiple medications and the reflux had improved greatly. She is currently having worsening symptoms again but we are praying for God's healing and protection over this little darling. My husband and I are continuing to both work outside of the home, he full time, and me part time at the hospital and full time at home.
Saturday, February 15, 2014
The day little Miss Paisley turned 6 months I baked her some sweet potatoes for her first meal. She had seemed interested in food for a little while but not overly so we hadn't even tried anything yet. I love being able to make something wholesome and nutritious and know that there are no preservatives or chemicals in it. I have found lots of great websites for baby food making, but my absolute favorite is Wholesome Baby. This site goes through absolutely. everything that I had questions about. It talks about each food group, grains, dairy etc. There is discussions about when and how to feed. Allergy info, contamination info, etc etc. If you are looking for a great site, look no further. This first batch of food that I made included sweet potatoes, peas, apples, squash, and plums. And then different combinations with those foods. I love to bake the foods as the foods taste much better in my opinion and the nutrients remain. She loved her first meal. Now if she was just a bit bigger in this high chair it would be perfect.
Monday, December 30, 2013
Christmas was wonderful this year. WE were able to spend lots of time with family and were able to celebrate Jesus' birth with those that we love. `The kids are loving singing "Happy birthday" to Jesus on Christmas Eve, and I am so thankful that it is a tradition that my parents started with us. We were all sick on Christmas Eve with colds, so didn't do all the visiting that we had planned but still it was nice. We did go to the Christmas Eve service at our church, and we had dinner at my parents, and typically a large party is planned but my mom called everyone to say we wouldn't be doing the big party as our family was sick and she didn't want to expose everyone. I was happy to be able to be out and not be home and not spending time with our family. Christmas Day was wonderful. The kids were thrilled with their gifts. We were so blessed this year by the generosity of some wonderful people. My parents as well as one of my husbands co-workers helped us get gifts for the kids this year. I can't even begin to tell you how blessed we were to receive these gifts. Each of the kids got one special gift that they were really really hoping for. Sophia got an American girl doll and was beyond excited. She also got clothing for her doll and some lip gloss and clothing. Sam got a snow board and legos that he had really wanted. Preston got this sweet little Mickey chair that he absolutely is thrilled about. And little miss Paisley got Sophia the Giraffe which she is loving chewing on.