Playground Playdate

We have a great wooden playground really close to our house. My kids absolutely love it. We were fortunate to be able to get to the playground the other day with our friends Bethany and her daughter Makayla. WE love getting around to all kinds of local playgrounds throughout the whole summer.

A trip to the ENT at Childrens

Sam and I headed into Children's this AM, after I worked overnight at the hospital. To say I was tired would be an understatement. And of course there was a huge function at Fenway Park today so traffic was attrocious. Anyways we had a great visit with the ENT. I went into the appointment thinking that they would have to put Sam under to pull out these tubes in his ears, more specifically the left one because that is the one he has been complaining about. But Sam was so awesome (as always) that Dr W just pulled both tubes out while we were there today! They were pretty disgusting. I can't say that I have even seen a tube AFTER it has come out of an ear, they certainly aren't anything nice looking, with the blood and ear wax all caked to them... BUT praise God they are out!!! Dr W is fabulous but he said he doesn't need to see us again and I am thrilled! It is great to not need a specialist any longer. I am so thankful we don't have the episodes where he stops breathing anymore. I am thankful that his tonsils/adenoids are out and that we never have to do that again. I am thankful that Dr W is a Christian and has faith. Sam was 42lb 13oz today, which means he has lost more weight:-( Not sure what is going on there....I guess I will call GI on monday and see what they think. Becuase he is down about 4 pounds, and when you are already skinny.... In other news, I am not sure if Mr P is getting sick or I was just the very fortunate recipient of his puke today. He really hasn't been puking in months, so when he does I am always leery of what could be the cause....is he having an allergic type reaction to somethign that I ate that is coming through into the breast milk, is his reflux getting worse, does he have a stomach bug, etc etc. Today it was absolutely repulsive right down my shirt and puddled in my bra. DISGUSTING!!!

Privigen IVIG progress

SO I have AMAZING health insurance and I am so blessed to have it. We pay quite a bit for our health insurance, but it is worth every penny. Sammy has a case manager through our insurance that helps get everything in place for him, in regards to anything and everything I could possibly need. She has gotten appointments all scheduled on the same day. She got his apnea monitor and supplies situated for us. She got us referrals for whatever we needed. She got the formula we needed for Preston covered etc etc. I am just so thankful to have her, and it is just such a blessing to have someone on the other end of the phone that I can vent to about all the medical stuff and she absolutely gets where I am at and all that we have been going through. She calls and checks in on us about every other week, and always offers her assistance. A tremendous blessing! That being said we are in the process of switching the location of the IVIG to closer to home. Way back in the beginnging we did all the infusions at Children's, but for the last nearly year and a half we have been doing them out here at Heywood Hospital. It has been so much easier not having to travel the hour and a half plus into Boston. So we are just about there to have the privegen out here. I am just praying that all goes smoothly and that we can continue to do it out here. I would love to be done with all of this, but Sammy just isn't quite there yet.

Kindergarden and hypothermia?

Last thursday Sam had his end of year kindergarden show. It was so cute, the kids sang and danced and played instruments. It was so fun to watch the kids and their different personalities. There were some kiddos that were completely in their element and just had a blast dancing around and having everyone looking at them, and then there were other kids (like my Sam) who didn't at all seem comfortable and were busy watching their classmates. He was so fun for me to watch. He knew all the words, and the moves but was so meek about it. He said he had so much fun though. I can't believe my guy is done kindergarden! How does that even happen? It feels like just yesterday I held his tiny (blue:-() body next to mine and hysterically cried when they took him away from me and brought him to the NICU. And now I feel myself getting emotional thinking that he is getting so old and is just not going to need me or want me as much. I am savoring these days lately where he wants to cuddle. In the past when he wants to cuddle I have focused on it being becuase he wasn't feeling well, and that was why, now I am just enjoying every moment of these snuggles. Pretty soon I have a feeling it won't be "cool" to snuggle with his momma. But speaking of him being sick... please keep him in your prayers. Now that the warm weather is here he has been complaining that he is cold. He did this a couple years ago, when he was stopping breathing. They never figured out what was the cause back then. Back then he was getting cold in the middle of winter, and we were sleeping in the living room with him in front of a wood stove that was burning super hot, and the living room was in the 80s but he was still 95 for a temp. But I have been saying for the last several weeks that he is "just off" can't quite put my finger on it but something isn't right. Well the last couple of days I have been checking his temperature and it has 95.5-96.0. Pretty low:-( So I will be calling his pediatrician tomorrow, but I am not sure what she will want to do about it. He has been dragging for the last week, falling asleep early, just laying around when he gets home from school etc. I thought after the privigen that he would perk up but he hasn't yet:-( Please keep him in your prayers.

Birch Hill Dam

We took a family walk the other day with the kiddos. It was really quite fun, until the down pour on the way back! The kids of course thought that that was the best part. We have a very large dam about 20minutes or so away from us. So we went and walked up to the dam, the kids loved seeing the rushing water, and all of "the nature stuff" as Sophia calls it. The kids thankfully have a very adventurous daddy. I am so thankful that we can balance each other out in this aspect. Matt is definitely experienced with the outdoors and all that God has blessed us with in nature. I love the fact that he has so much knowledge about it, and likes to share it with our kids. Daddy even had them walking up on the train tracks that ran along side the path to the dam. The kids were so excited to be up there. It is silly but when I was a teenager and dating Matt, we went out on the traintracks together. It was so fun, and I remember thinking that he was so brave and knowledgeable about it. I also remember being terrified that a train would come. Thankfully one never did, then or when we were at Birch Hill. But these are the things memories are made of. The view looking down into the Dam. Preston just hung out in his stroller, unfortunately the bugs really liked him once it started raining. I had to completely cover him with clothing in order for them to not eat him. Rock climbing with Daddy:-)

American Cancer Society Relay for Life

I have the most amazing friend. She truly inspires me. She is an amazing Christian mom, wife and friend. She puts everyone before herself. She is loving and selfless and kind. She is creative, and strong and helpful. She is generous, compassionate and sensitive. I am so blessed to call her friend. Prior to ever meeting her (I cant believe we haven't been friends for that long) she was diagnosed with advanced cancer. She went through surgery, and chemo, and radiation. She did trial drugs, and just went through a really tough time. During that time she had FOUR little kids. I want to say the oldest was I think 5, and the youngest two who are twins were two! To say this was a trial would be an understatement. But when you hear her speak of this time in their lives, or the subsequent years, she ALWAYS talks about God and His strength and His grace and provision during that time in their lives. It is truly inspiring to listen to her speak. Our town every year does a huge Relay for Life that raises tons of money for the ACS. This year I brought the kids along with me. We walked in support of Meg and also of sweet Lucy, who is fighting cancer right now. You can read all about this amazing little girl and her amazing family here, and please keep them in your prayers. Here are some photos from the Relay.... Meg and Mr P A view of the field Meg and another wonderful friend Tippany Meg and I Meg's husband Jeremy, her son Josiah, and Mr P

Babies, friends and fun

SO my best friend came over with her beautiful four and a half month old little girls. The girls names are Abigail and Aubrey, or Abby and Bre Bre. My kids absolutely love their auntie Chantal and have been anxiously waiting a visit with her and her precious little ladies. So thankfully we got to have a great visit with them. Soph and Sam were in their glory. Sophia wanted to hold both girls at once. As did Sam. Sam was easily distracted but Soph was completely sucked right into the mothering role. So so cute. Sam is acting so funny still. I can't quite put my finger on what could possibly be going on with him. He just looks sickly and is acting sick. I kept praying that we would just get to IVIG and that that would boost him and give him his energy back but the poor guy is still struggling. I wish that I could just make him healthy. He is such a trooper though. I can certainly see that we will probably be heading into the doctors next week if he doesn't perk up.