Struggling....

I haven't really writting on the blog what has been going on in my head regarding Preston. I keep trying to push these thoughts out of my head, and praying to God that this isn't true. But after the last month with what seems like constant illness for Preston I am really starting to feel like he is like Sam. Sam didn't present like a "typical" IgG kid, in the fact that his issues were mostly GI, but Preston is respiratory and ear infections which is the "typical" presentation of an IgG deficient kid. I am trying to wrap my brain around how I can handle another child like Sam, but then am lovingly reminded by God that I DON'T HAVE TO handle this on my own. I have Him to carry me through, and beyond that He has filled my life with an amazing support system of Godly people. Obviously I am praying that this isn't the case however the multiple illnesses that dont resolve easily/normally are starting to be overwhelming. We got some heavy duty antibiotics on saturday in the ER, and today his doctor is calling in another type. That will make four rounds on antibiotics in the last month, and he isn't ANY BETTER yet, But to add insult to injury, he has now developed diarrhea and a rash:-( Here is a pic of my guy when he was happier....

I prayed for this child and the Lord has granted me what I asked of Him. 1 Samuel 1:27 I know that God has us in His hands, and that it will all be ok. But today I am tired and today I have a miserable baby, who has been miserable and not sleeping for nearly a week...

An ER visit

Poor Preston has been so miserable the last few days. Thursday he had a temperature of 103.8 in the night, but then in the morning woke up without a fever and seemed ok throughout the day. Then thursday night he had a fever again, but woke up friday morning without a fever again. I called the doctors office just to talk to them to see if there was any type of virus' going around and there has been. He didn't really have any real symptoms besides being fussy and having a fever. So we were going to wait it out. Our pediatrician was on all weekend so I knew that we could call her if we needed to. So yesterday Preston was very irritable all day and wasn't eating well at all. He wouldn't take any food, his bottle, or his sippy cup. He would nurse, but I was anxious since he has been eating food now that I wouldn't have enough milk to sustain him and keep him hydrated with his high fevers. He fell asleep and sometime around 10pm woke up absolutely inconsolably screaming. He was absolutely miserable. There was nothign that we could do that was helpful. I had given him tylenol and motrin a little bit earlier, he wouldn't nurse, he didn't want to be held or put down. He was absolutely miserable, my husband touched his head and he seemed to flinch from it. So that really scared me. Since he had the meningitis when he was tiny, this really made me nervous. We went to the ER, and they took us right in. He had a really bad ear infection in one ear, the other was pink but not all the way infected. The ER doctor also believes he has a stomach bug as well. Poor munchkin. They ended up giving him a heavy duty antibiotic as a shot. Poor guy cried so hard. And now he will be on oral antibiotics for the next ten days or so. We are also contemplating going to an ENT to get tubes put in his ear possibly. Here is a cute pic of my guy from a few days ago....

Free Fun Fridays at the N. Easton Children's Museum

A fantastic organization called the Highland Street Foundation, sponsors an event here in Massachusetts called "Free Fun Fridays." This event allows free admission to multiple places throughout the state from spring until the fall on fridays. Places include, multiple Children's museums, science museums, plymouth plantation, several zoos, an armory, and many others. We have done several of the trips now and have had such a great time. This friday we went to the Easton Children's Museum, which is built inside of an old firehouse. The kids thought that it was so cool.

The museum was very busy but thankfully while we were waiting to go inside they had a wonderful area outside that the kids got to enjoy as well as a little magic show that had them laughing hysterically.

After about an hour and a half of playing outside and doing all of the outside activities we got to head inside....

Sophia climbed up in the firehouse

Sam was really enjoying being in the fire engine and spraying the firehose.

Sophia at the Post Office

Sam in the doctors office. It is kind of funny how excited both of the kids were in the medical room. They loved the crutches, walker, incubator, wheelchair etc.

Sophia in the dinosaur room looking through a microscope at artifacts

Sam at the lobster ship

Sophia in the ship, being the "captain"

There was a great exhibit that was all about space, there was a shuttle that the kids could go in, and this area where Sam is was computors that they could play with, but there was actually real footage of space and space shuttles

Pony Rides and ANOTHER new doctor....

So I am surrounded by some of the most amazing wonderful women. My kids are so spoiled by so many people. They are loved by so many and I am so thankful. One of my wonderful friends, Judy, has a pony and two horses. She invited us over to play and the kids just had a wonderful time. Judy's daughter Audrey was in Sophia's nursery school class. And the girls got a long wonderfully. Also in Sophia's class is her friend Alison, whose older brother Sam was in my Sam's class last year. So the boys had a wondeful time playing too. First the kids got to ride the pony, Pearl. They each really enjoyed Pearl as she was so gentle...

Sam riding Pearl

Sophia riding Pearl

Alison and Sophia

Sophia, Audrey, and Alison

Sam riding Tess

Sophia riding Tess Then today Sam had an early appointment at Children's. Back in May when Sam had his follow up with his immunologist, Dr Baxi expressed some concerns he had with some of Sam's skin tone, as well as some marking on his skin, and he requested that we be seen by a dermatologist. So we had that appointment today. Dr Gellis was very nice. But there were several comments that were made that made me pretty sad. He started off the conversation by saying "Wow your son has quite the extensive medical history, I've not seen anything like it." Which just reminds me what a struggle poor Sam has had. He then went on to inspect Sam skin, which does have some abnormal markings, and he also apparently has a very large amount of moles, in very unusual areas. The doctor kept saying how "unusual" and "concerning" these markings were. He then went on to ask very explicitely about skin cancer in both my and Matt's side of the family. He said to keep a very close eye on his skin, and to call if there are any concerns or changes in his skin.

Hiking with the munchkins

I took the munchkins on a hike with my friend Myriah and her kiddos today. We have this little book that looks like a passport, and inside of it is a list of all the different state parks, reservations, mountains etc in the state. As you go to each location you get to put a code in a little lock box and inside there is a stamp. So it is a fun little adventure for the kids.

The kids had so much fun with their friends as we walked around a lake and through the forest. We hiked for just about two hours, which was just enough for the littler kids, and Preston was starting to fuss at the end too. After our hike we had a nice little picnic lunch and then we all left. It was perfect. This trail was in the Leominster State forest

Being "that" mom

You know the one I am talking about. They say things like "I don't know how you do it.", or "I couldn't do it." or "I would be so overwhelmed." And you know they mean well and that they are trying to be encouraging. You know that they have no idea what you are going through and therefore they are just trying to be helpful. They don't mean to make you feel like you are "that" mom that everyone looks at a little differently. But being "that" mom the one with the sick kid can sometimes feel so isolating. So overwhelming so frustrating. So often as a nurse, I get the comment that it is so good that I am a nurse, or what would Sam do without me. Yes I am a nurse, but first I am Sam's mom, and that is my most important job. But at the end of the day even if I wasn't a nurse Sam would still be my precious little boy. And I wouldn't change that. I am thankful for this walk that God has given me. I am thankful for all that I am learning through Sam. I am blessed to have my faith being stretched and strengthened. Most assuredly I wish that Sam wasn't sick, that he didn't have to go through so much, but he wouldn't be the same either. God has given us to each other and I am so so thankful for that. Some days are hard, but most days are amazing! Sam is the most amazing little boy! He is kind and compassionate, he is emotional and brave. I learn so much about life and love while loving this little boy. Each step that we take in this journey reminds me that God is the only one that knows the answers and what tomorrow holds. And yes I get frustrated when doctors make comments like "Well Sam is just a mystery." Or "Sam is just being Sam, and he doesn't follow all the rules." But God knows the intricacies of Sam, and God created him perfectly. Sam truly is a gift, and I am so thankful to be blessed with him. So if you are "that" mom, that is struggling with feeling isolated and alone, as you are walking the journey with a kiddo that isn't the same as everyone else, be encouraged. God chose this path for you, He knows perfectly what the plan is and it will be amazing. Some days are truly hard, but in those moments God shows himself stronger. Be encouraged! Be blessed! Be happy! And be thankful! God's got this and YOU in His hands:-) We had IVIG yesterday and had one of our favorite nurses:-) Nurse Carol. Since Sam is gaining weight finally we were only there for about five hours

Nana's 80th birthday

We got to celebrate Matt's grandmothers birthday the other day. She actually was born on July 15th, but we were unable to celebrate that day due to weather. So almost her entire family was here. She had three children and each of her children was married. They were all there. She has 8 grandchildren, and many of them are married, and all but one of them was there. And then she has six great grandchildren and all of them were there. She isn't typically one for photos but I did manage to get a couple.

Nana with her great grandchildren

A four generation picture:-)

Buttonwood Park

My best friend and I have been friends since we were like 12 and 13 years old. Growing up we always imagined living next door to each other and having our kids be best friends, and how much fun that would be.... Unfortunately our plan hasnt gone completely as planned...but it is getting closer. We had our first official playdate with our kids this week. It was so much fun. Audrey and Abigail ( Bre and Abby) were so sweet and my kids just love them! This is what I pictured growing up, doing all kinds of stuff together with our kids. Love you Chantal!!! We went to the Buttonwood Park Zoo. It is a tiny little zoo, but is really clean and well kept. You really get some up close views of the animals. Sam was having a blast being the photographer and photographing the animals.

Sam LOVED taking pics of the animals

And more animals....

And to end the day we took the kids on the carousel. Preston was so funny. He was smiling as he held onto his rooster.

It was such a great day!!!