Friday, June 29, 2012
Gosh it has again been such a crazy week! Sammy has had a horrible week GI wise, but since I was playing the commenting challenge I haven't even been keeping track, so since this is my "medical journal" here is what's been going on the last week.... MONDAY: was a little better than the weekend in regards to pain, but stools were massive and very strange. Bloody and seemed like tissue or something....was eating fair but not great TUESDAY: relatively the same as monday, although this day he started complaining that he was really cold again. I unfortunately didn't really think about checking a temp that day (Dumb!!!) but he never felt overly chilly. But when I talked to PCP she said that people can have a low temp when they are fighting infection too... WEDNESDAY: Pain and discomfort is back. Eating is worse, but is drinking well. His energy was decreased today, and continued to complaining of being cold. This day his temp was 96.1 orally. Stools continue to be huge and shredded, with some streaking of blood... THURSDAY: Was a rough day. Sammy was complaining of nausea as well as pain. Poor guy. This is a new complaint for him as he hasn't had complaints of nausea with the colitis before, or at least he hasn't voiced it before. He essentially laid under a big fuzzy blanket all morning, and then seemed a little bit better. We had to go pick Sophia up from VBS and went to the lake for a bit. At the lake he did swim and play with the Paradis family, but certainly wasn't his normal self there. When we got home he still complained he was chilly, but asked for some chicken noodle soup and actually ate it. So praise God for some progress! He was super sensitive and emotional, which he always is when he doesn't feel well.... FRIDAY: Today started out ok. He had another relatively normal stool too. He didn't eat anything but I got him to drink some water, and a little juice. He really wanted to go to VBS so I let him go with Sophia. He had a great time, and then ate a pretty good lunch and was really active. We then went to my mom and dad's as today was my dad's birthday. He was ok there, although he didn't really run around much and just wanted to sit and watch everyone else around him. But he didn't complain of pain while there. When we came home he ate a really good dinner!!! I am so thankful for that. And then again complained of being cold, and wrapped up in a thick fuzzy blanket, even though it is 90+ degrees out and we don't have air conditioning.... I did talk to Dr Zella this afternoon. He isn't quite sure of what is going on with my little mistery man. He was certainly happy to hear that he seems to be getting better but he isn't sure what caused it. So we have an appointment monday morning and will go from there. The poor little guy, I just wish I could take it all away from him. As a mom, I have watched him struggle health wise, essentially his whole life. And although we keep "adding diagnosis" to his little list of medical issues, I still don't think any of this is making him better. It's like we are just scratching the surface and that we don't have the big "aha!" moment that ties everything together. WE don't know so much about him medically, and so when these weird things keep happening no one is sure how to deal with him. And so he is a little boy who has so much pain and discomfort and I am his momma that watches sadly:-( Praying for a good weekend for my sweet little guy and hopefully some answers ASAP or even better for our amazing God to heal him!!! Have a blessed weekend!!!
Wednesday, June 27, 2012
This is the topic for day three of the commenting challenge.... Tell us about your social media! Where can we find you? Link to your twitter, pinterest, Facebook, instagram, or google +. If you don't use those sites, then tell us why not! Also, what are your favorite websites? Are there any that you check daily? What do you like about them So lets see, I am definitely a Facebook user, much more than I care to admit. I have a HUGE family and it makes it so easy to keep in touch with everyone and feel like we are really involved with each other if they live far away. I don't use Google, Twitter, or Instagram. Pinterest is something I really enjoy when I am planning a party, something new to decorate or something fun for my munchkins to do. You can find me here Dani Jean. Gosh favorite websites, I am a huge fan of Zulily. I have found some great stuff for my kiddos. I LOVE cooking websites and a couple of my favorite go to sites are All Recipes and Cooks. And then there are like a million blogs that I love to read. Most of my blog interests have been people with "medical kids" or complicated pregnancies, or inspiring Christians who are thriving and who are so inspiring to me... I have a few listed in my blog roll, but for the most part they aren't all there. I am working on getting them listed.... Have a blessed day!! I look forward to finding many new blogs to read this week
Tuesday, June 26, 2012
I am taking part in the Commenting challenge over at Jenna's Journey Jennas Journey. This is a challenge to find new blogs to read, and to comment on others blogs. The topic that Jenna has suggested for today.... Tell us about your blog. What do you blog about? Why do you blog? How did you start blogging? What kinds of things do you/are you willing to share with the world? Where do you find your topic inspiration? (Hint: Don't share about your social media just yet!) I started my first blog (www.weberfamilylife.blogspot.com) when I was pregnant with my oldest son. It was a very complicated pregnancy and one in which for most of the pregnancy they didn't think he would survive. My youngest brother Dennis was serving in the military as a sniper in Iraq, so I started the blog so that he could get info whenever was possible. Blogging now has become such a blessing to me. With Sam's medical problems it has been a place to journal and keep track of all of his journey. I also blog about Sam in the hopes that it will help someone who is struggling, that it will be encouragement to them. It has been a place to chronical my life as a mom and watching my kids grow. It has been a place where I can ask for prayer, and where I can see my faith growing and God answering our prayers. I share a lot on the blog, I feel so strongly that sharing our story will be encouraging to others, and that God uses each trial that we go through to help others. I can't really say tht I have inspiration for topics, I just blog about the day in and day outs of our life
Monday, June 25, 2012
Today I am linking up with Jenna, over at www.Jennasjourneyblog.blogspot.com She is having her third annual commenting challenge. This is to find new blogs to read.... So if you are over here from Jenna's journey here is a little me and my little family... My name is Danielle, I am a thirty something year old Christian wife and mother. I am a nurse who mostly works pediatrics although I also work labor and delivery, newborn nursery as well. I live in Massachusetts. My husband Matt was my teenage crush:-) He is five years older than me, and I really thought he was so cute when we were at our church youth group when I was thirteen! We didn't really talk for several years other than the typical hi bye thing, but then when I turned sixteen he asked me out. We got married in 2002 and will shortly be celebrating our 10th anniversary:-) In 2006 we had our oldest son Samuel. Throughout the whole complication filled pregnancy we were constantly praying for God to protect our baby and let us bring him home. And HE DID!!! Sammy was born weighing 4lb5oz and has had so many many medical problems...immune deficiency, C. diff. colitis, severe apnea, reflux, bleeding disorder, and most recently eosinophilic colitis. I am learning so much about myself and about God's love for us as I watch this amazing little boy go through so much. He is my heart. This is a picture that I had taken of him by an amazing photographer recently, isn't he so handsome.... And then sweet Sophia is my four year old little spit fire. She was also born prematurely but she has done fabulously. She is super tiny for her age, but she is bigger than life in personality... And my last little miracle is Preston. When I was 19wks pregnant with him the doctor said that he wasn't viable and the goal would be to save me. Throughout another complicated pregnancy I kept praying that God would let me hold this little one in my arms, and he is here. He too has had some medical challenges but he is just amazing and brings so much joy to my life.... We have a cat, his name is Louis but unfortunately I don't have any recent pics of him. So this is our blog, this is my journal, a place to document our medical journey with Sam, a place to sing God's praises for the amazing blessings He has given us, and a place to share our story. Welcome!!! Please let me know you were here, and I will come on over to your blog as well:-)
Sunday, June 24, 2012
So we started Sam on the new medication called Dipentum on friday. Friday he was absolutely miserable in the evening. Saturday AM he seemed better, and by saturday night he was even better. Today he says "My belly only hurts a little." So God is healing this little guy and I am so thankful. He seems like he is still fairly wiped out but rallies for a while and gets wild and crazy. We set up a little 8foot pool for them to swim in. They love it, although Sammy gets freezing really easily. Poor guy was shaking like a leaf, we kept having him come out to get warmed up and then he would want to go back in. I am just so thankful that he is feeling better. His appetite is pretty poor but at least he is eating. He is drinking ok as well. The other day we got to watch my little nephew Darius. Darius was one in december, can you see how close in size he is to Preston? My big guy is growing so big:-)
Friday, June 22, 2012
So yesterday we went to the lake with our friend Meg and her kiddos. It was a great day. Sam really ralleys to have fun with his friends. It is a great distraction for him. So we spent almost the entire day there. I heard back from Sam's primary GI doctor today, he started him on a new medication that they use to treat ulcerative colitis. It should help the inflammation and therefore help the pain. Unfortunately it takes a few days or so to see if it is going to help. But for today he is so miserably uncomfortable. I was contemplating bringing him to the emergency room here locally, although I am sure they would take one look at him and transfer him someplace else. So instead we are trying to stick it out at home and I called the on-call doctor at Mass General. She was super helpful and kind. She said it sounds like the Eos. colitis is back. And reinterated (because they all have to remind me) that having the Eos in the colon is so uncommon, that it is just a complicated process of figuring out the cause and course of treatment. She said to give him tylenol, a warm bath (yeah sure in this 90+ degree weather) and a warm compress to his belly. So we are trying and praying to see if this helps. But here are the pics from yesterday at the lake:-) My beautiful little princess modeling her new Puddle Jumper life vest Mr P with "Auntie" Meg. This lady is such an amazing friend and sister to me. I am so blessed to have her in my life. A truly special, inspiring beautiful woman of God. Sam and his buddy Noah. Sam and Noah each have had some pretty complicated medical histories. They have a special bond because of it. Miss Sophia swimming with Liz, Liz is a sweet teen that helps babysit Meg (and my friend Tipp's kiddos, Noah, Emily, and Caleb) This was Preston's really first time swimming. I am shocked at how much he enjoyed it. He didn't at all care about the temperature. We just sat him right down in the water. And he started splashing and had a blast. My mom got him this cute little crab float and he loved it, although he was trying to get farther into the water the whole time he was in it. Sam and his favorite summer time toy, a squirt gun:-) Sophia and Caleb (this is Tippany's youngest) Sam and Ben (Ben has a twin brother, Josiah) had a blast swimming with their goggles. It is amazing to me how quickly they just figure out swimming. Obviously I wouldn't want him to swim out over his head, but he did so well after just yesterday being back in the water, from all winter of not swimming.
Ugggh felt like we were on the up swing with Sam, but unfortunately we are back in a slump with him. I had actually emailed his GI at MGH over the weekend because he had had such significant pain for the last several days. I received an email back on tuesday essentially saying to keep the eggs out of the diet and as long as there was no bleeding we were ok. Fast forward to wednesday and thursday mornings, wednesday he had a small amount of blood and then throughout the rest of the day tiny amounts of blood. Yesterday he had a large amount of blood:-/ and is feeling pretty crummy. Poor guy! I just feel so bad for him. He can never catch a break. He is not eating, and was miserable last night. This morning he is a little better I think. Of course he isn't eating so that might be why.... Waiting to hear back from GI. Any parents of EoS kids out there that have intermittent bloody stools? I would love to find someone to talk to (compare notes with) about our EoS kids.....
Wednesday, June 20, 2012
SO I sent Sam's doc an email yesterday regarding his recent abdominal pain. He essentially wants us to remove the eggs again from his diet and see how he does. So that is the plan for now. This is such a roller coaster ride. I still don't believe the eosinophilic colitis is Sam's actual problem, I believe it is a symptom of something bigger:-( It is so frustrating when the doctors say things like "well this isn't really typical, but we all know that Sam doesn't play by the rules." Yeah I get that my kid is complicated and doesn't fit the typical EOS mold, but that doesn't mean I don't want him better. I so desperately want him to not have pain so often. To be able to digest food, and not have discomfort. To start gaining weight and not be so skinny. To have a healthy glow to his skin. To have energy and a good well balanced nutritious diet that he enjoys....etc etc. So for now eggs have to come back out, we will see if that makes any difference. I don't have a really clear understanding of how long I am supposed to wait for this to get better.... But for now please keep him in your prayers
Tuesday, June 19, 2012
I had the priviledge of going strawberry picking with my munchkins today and my wonderful friend Ashley and her two boys, Taron and Hunter. Our kids really love to get together and unfortunately schedule wise it is so difficult to get them together very often. We had a great time and amazingly perfect weather. Temperature was warm but not hot, and it wasn't sunny so no one got too much sun. Kids had a great time, although both of my boys seemed a little out of sorts. Preston got fussy towards the end. He certainly still isn't feeling all that well. I wish GI wasn't making us wait out the week before they try to help him. He actually had one of the worst days since this all started today. He ate poorly all day. atually didn't even really eat breakfast or lunch, but was able to get a good amount into him at dinner. Thankfully my milk supply is still up so he was able to nurse well today, which he will never turn down:-) He also enjoyed some strawberries while we were out picking. I have this great infant feeder thing that you put whole foods in and they bite it through this mesh bag. So they get the fresh foods without the choking risk. He really really likes it. Ashley's older son, Taron is just a couple months older than Sam. These two sure can rough and tumble together. I wish we lived closer and our schedules were more conducive to getting together more frequently. Little stinker Sam wouldn't let me get a picture of just him!!! Hunter is just a couple months older than Sophia. These two are so sweet together. Both of Ashley's boys are so sweet towards Sophia, always wanting to help her, or have her sit next to them in kid's church, etc... We just had a fun day. The kids didn't actually do a whole lot of picking which was kind of suprising. Or what they did pick they ate for the most part. When we went last time they picked really well, so I just assumed now that they were older they would do even better but they were too busy playing with each other. When we got home, Sam was completely wiped out. He ended up asking if he could rest, and laid down in the living room for the rest of the afternoon. He then was really complaining of chest and belly pain at dinner time as well:-( Poor guy! I just really wish we could fix this for him. He didn't eat anything today that should have caused his symptoms, well at least not that we know causes him problems.... I will see how he is tomorrow.
Monday, June 18, 2012
Gosh I feel like this roller coaster is starting to go too fast again. In January when we got the eosinophilic diagnosis I was caught off guard, but then in changing the diet and things improving I feel like we have gotten into a grove again. But in the last week or so Sam has been having low body temperatures again (in the 95 degree range) and it has been warm. So now we are going to be getting in with MORE doctors. We did this low body temp thing before, when he was just stopping breathing at night, and so I am anxious becuase of that. His primary talked about it being an infection causing the low temp, or possibly some type of endocrine disorder. So I guess that that will be our next course of action. I know that God totally has all things under control but still I am overwhelmed. Something also is going on with PReston GI wise. I am trying to figure out how much of the eosinophilic stuff is hereditary. He has had more than his fair share of GI issues since birth. But this past week he has been puking (alot) and I think refluxing again. Which GI seems to think is unlikely that it is reflux because it doesn't usually get worse again after six months. I spoke with the on call doc over the weekend who recommended mylanta to see if that seemed to help, I am on the fence about whether it did or didn't. He is waking up frequently at night, coughing, spitting up, burping a ton and now three times has had this respiratory type symptoms that come on quickly and resolve quickly, he gets wheezing and congested and then it clears after like ten minutes. Weird... So I called GI this morning, they want me to wait out the week with him like this to see if anything changes. To see if it is a "post viral" delayed emptying of his stomach. Meaning maybe he had an illness and it kind of slowed down the motility in his stomach, so give it a few more days to see if it gets better. Sam seems to be ok today, and he had a little bit of egg yesterday! I made homemade brownies for him, with his ingredients, and eggs. He had two within the course of the day and seems fine! I am so happy about this. I am super frustrated though because I feel like I always have to be the bad guy with him:-( I made the chocolate raspberry cake for Matt for Father's Day, and Sam wanted a piece. Of course, I would love for him to have a piece, but I also would love for him to not be sick or have GI symptoms. But both my MIL and Matt wanted him to have some! It makes me so crabby! Yes they ask so he sees them asking me, if I say no I am looking like I am just being mean, he doesn't understand why I don't want him to. If I say yes then I am telling him that it is ok to eat whatever he wants and that we don't have to do what the doctor says, but beyond that I am also telling him that he doesn't really need to follow a specific diet, so when he is away from me then what will he do??? Uggghhh! So frustrating! On friday I watched my friend Megs kids (3 of 4). We had such a fun day. Ben and Josiah are six and are great friends of Sams. He absolutely loves playing with the boys. Gracie is eight I think:-) She was such a little helper that day. She did so much to help and keep all the younger kids happy.
Sunday, June 17, 2012
We had a great day today and pray that you did as well. Unfortunately Matt had to work all weekend:-( But we were able to have his parents and his brother over this afternoon for a little while after he got home. His brother was only here for a little bit before they headed home. But his parents got to stay for quite a while and we had a great visit with them. A while ago we had gone to a wedding and Matt had commented how he really liked the raspberry filling of the wedding cake. So I determined that I would be making that for him for Father's Day. It is such a process to make the raspberry filling. First you have to boil down the raspberries... After I boiled the raspberries and incorporated the sugar and other ingrediants I then had to strain it. Matt saw how much work it entailed and offered to help. He came up with this plunger type system that worked well, well until it didn't...THEY EXPLODED EVERYWHERE!!! I also made a dark chocolate cake. The kids help me put the raspberry puree and some of the frosting on. The finished product.... We had such a nice visit with Matt's parents... Matt and his brother Tim Sophia got some great snuggle time in with Daddy and Grandpa. Preston got some snuggling in with Grandma It was such a good day. I was nervous about EVERYTHING, but it seemed to go well. I think everyone enjoyed the dinner, and dessert. Matt got to visit with his parents which is nice, and the kids got some time with their grandparents. Praying that all the daddy's out there had an amazing day celebrating who God made them to be:-)