Monday, August 27, 2012

First Day of School and all kinds of stuff

It has been crazy around here lately! My back has been a mess unfortunately. And yet God has been using this situation of pain and frustration to bless me in amazing ways. My wonderful friend Meg had sent out an email (I didn't know) to our friends and family letting them know what had happened and requested help for us, whether it has been child care, or meals, etc. And people have just been so unbelievabley gracious to us. I am just so thankful. We also have this program called "freecycle" here in town. It is an email system in which you offer things you have that you no longer need, or things you are looking for for free. People often could use or donate things and it is such a wonderful program.... Last week a woman posted that she had some clothes in my size, and since the finances are so tight I was really struggling with clothing since I have had Preston so I responded to this lady. And she was ever so gracious, as I said multiple times that I would come to get the clothes, but then due to the medication for my back, and PT and just significant pain I wasn't able to get there. She then DELIVERED them to me!!! And these clothes are BEAUTIFUL. Again I am so so blessed!!! This week was also Sam's first week of school. He is a FIRST GRADER now! It was such an emotional experience for me to be there this time around. Last year on Sam's first day of kindergarden I was in the hospital, Preston was on a ventilator and it was just a really rough time! But here we are a year later, just so very thankful for where God has brought us.
Will update more soon....Lots of great pics of the kids, and some with my best friends twins:-) For now please pray for my back for rapid healing, and for God to bless all the people that are reaching out to us so completely willing to help in any capacity that they can.

Saturday, August 25, 2012

PT, swimming and recuperating

So I went to PT today and the therapist said "I was a mess" So not what I wanted to hear but I kind of expected it. But we are workign on getting better, so I am praising God that we have a plan and that He is sovereign and the healing WILL COME. My wonderful aunt Irene and Uncle Bud were close to here visiting and invited us down to visit and we had a wonderful visit at the pool with them. I actually got to soak my back which felt very healing. The kids just love spending time with them, and they are amazing, wonderful Godly people who I so enjoy being around. And a wonderful friend Sue brought us dinner today. Again I am feeling so blessed. Not loving the amount of pain I am in. But constantly reminded of how much God loves us no matter what. Will post pics of the weekend adventures tomorrow.

Friday, August 24, 2012

An ER trip for me:-(

So after the craziness of VBS, Soph's pneumonia and bringing all three kids to IVIG last friday, I had to work. I worked friday night and had a pretty good night. I went home saturday and slept a tiny bit in the morning. I went into work saturday night and it was a super stressful night. I had a really sick patient and was making all kinds of phone calls to make sure the pt was well cared for. I also had a surgical patient who needed some extra TLC. All that being said I was running around like a chicken with my head cut off for the first few hours of my shift. I got the surgical all taken care of and had to move a bed. And for some reason it hurt my back, I felt like this little pop, and instantly knew that I was going to be a mess:-( I immediately took some motrin that I had in my work bag and kept working. Unfortunately the pt got sicker and had to be transferred to a higher level of care. By the time the pt left I was in a TON of pain, and ended up being sent by my supervisor down to the ER. Now the ER staff was AMAZING to me! I can't even begin to say how wonderful they were. But I was just miserable. I couldn't sit stand or lay without being in agony. They did this spinal kind of injection with lidocaine and then an antiinflammatory. It helped a little to the point where I ended up laying down. They then gave me some IV meds to help the severe muscle spasms. And then I rested until my friend could bring me home. Sunday Matt and Sam were camping so they weren't home, and since they were camping my mom had had Preston and Sophia. So sunday I was able to come home and crawl my butt right into bed. But boy has it been a rough week. I am out of work for a least two weeks and start PT tomorrow. I can't really reposition without tons of pain, I can't lift anything, and poor Preston can't understand why mommy can't pick him up. It has been a rough rough week. But in the midst of it all God always sends a rainbow.... My AMAZING friend Megan has organized a group of people that are helping me care for the kids, and with meals and all kinds of stuff. I am just feeling so loved and blessed right now. I am also feeling frustrated to be needing this much help but again I am just so blessed. So far Tippany came over and took care of me for a whole day with Preston and Sophia. Then Matt's aunt Terri came on monday and tuesday, and BEYOND SPOILED us. The poor thing wasn't even feeling well herself but she took amazing care of us. On wednesday "Auntie" Paula invited us over for the day. And again she did a lot of the snuggling of Mr P and Sam and Soph played with Roberto and Julianna so that was fabulous. And she gave us a jar of HOMEMADE from FRESH TOMATOS spaghetti sauce! We actually haven't had it yet. But I can't wait. I am sure it is going to be fabulous!
We also got some special snuggle time with Meme this week and Darius..
. On thursday I went to my friend Megans for the day. Unfortunately I took no pics!!! And once I was there, she took care of EVERYTHING. I seriously just sat or slept ALL DAY. It was amazing to be able to rest that much. The kids had a blast playing with her kiddos. And then she fed us dinner, got my kids washed and in their pajamas and then we headed home to brush teeth and bed. And today my friend Bethany came over with her daughter Mackayla. Sophia and Mackayla get along so well. And Bethany is such a sweetheart. We have been so blessed by Bethany's generosity. As Mackayla has outgrown her clothes they have passed them on to Sophia. It is such a tremendous blessing. Finances are so tight these days. So each time she brings us clothes I could just cry because it is such burden lifter:-) Sam was reading to Mackayla....

Friday, August 17, 2012

A rough week

It has been a rough last week to say the least. So after VBS last thursday we went to the Lake Club with the Paradis family. While we were there is when I realized Soph really wasn't feeling that great. So that is when I called to get her seen by her doctor.
Once Sophia was diagnosed with Pneumonia on thursday, Preston began with his respiratory symptoms as well. I am praising God that so far he has remained ok. Still has an occasional cough and a little bit of a runny nose but is doing well. The day after Sophia's pneumonia diagnosis Sam had IVIG. I unfortunately had to bring all three kids with me so it was quite a challenge. Sophia was feeling absolutely horrible so she laid in the hospital bed next to Sam. I was so concerned after Sam had been complaining last time of the headache that he would have a reaction to the IVIG but praise God ALL WENT WELL!!!! The IV was inserted on the first try. And Sam essentially just played a lego game on my laptop and watched a movie with Soph. Sophia essentially jsut layed htere most of the time we were there. Preston was a bit more of a challenge but that is expected these days as he is a very busy boy:-)

Thursday, August 16, 2012

Pneumonia, VBS, and Duck eggs

Hows that for a crazy title? Crazy about sums up my week! Our church has VBS this week. And the theme is "Sky" I have noticed several other churches have done this theme this year as well. WE get over two hundred kids coming to our VBS each year. Last year I was pregnant with Mr P and couldn't help out very much. But this year I have been in the nursery with all of the workers babies, and have been the "nurse on call" for emergencies. I am praising God that we haven't had any emergencies this week, lots of bandaids and stuff but nothing terrible. My kiddos are having an amazing time. Sophia jsut loves any type of characters and therefore has had such a great time each day with the different costumed characters. It has been a little bit of a challenge this week with Sam since he has the food allergy issue this year. But praise God we have really been able to find something comparable for snack so he didn't feel so different than everyone else. I have NO PICS of Sam from this week yet but maybe tomorrow....
In other news I FINALLY heard back from Sam's GI doctor regarding duck eggs. He said we could go ahead and trial them with Sam and see how he does since they are a different species and different type of protein. So far he has had them twice and hasn't complained of any worsening belly pain. He hasn't been not complaining though either. So not sure... I also have done some more research about his IVIG product, and have heard that a side affect has been aseptic meningitis. Now after his last IVIG he complained for a couple of days that he had a headache (which he has NEVER done before) So I am so anxious about the next infusion. Please be praying that all goes well tomorrow as the plan is to do it tomorrow. Miss Sophia is also sick. She actually started with a little cough on tuesday night. It was a dry non-productive cough. She didn't have a fever, and didn't really seem too bothered by it until today. I actually had worked the last couple of nights, but Matt had reported that the cough was worse at night. So today when she got up she seemed ok, but looked pretty tired. We went to VBS and then afterwards to our friends lake. She DIDN'T want to play! She actually just wanted to sit and watch everyone else. At this point I had already called the doctors office, and was waiting for a call back. But while we were at the lake club she just was pretty quiet and not at all herself. I was really starting to get concerned. (SIDE NOTE: due to her not feeling well she was being held by Jeremy, Meg's husband, and she said to him "you have big man boobs!" I was mortified. She says some of the most embarassing things. But by the time we left the lake club she just was really feeling pretty crumby. I called the doctors office again, and then also paged her. She thankfully said that she could come right in and be seen. And poor munchkin has pneumonia! She is very miserable. And just this afternoon has been spiking fevers over 103!!! Poor pumpkin, please be praying for her.

Friday, August 10, 2012

Girls Night!

So I can count on one hand the amount of times I have been out for a "girls night" since I have had kids. Since Sam is now six, you can fully understand how wonderful these very rare nights are! I did have to bring Preston with me, since he loves to nurse and is pretty stubborn about it these days but even still it was a wonderful night. Since I had P we just stayed in. Meg's husband Jeremy took their four kids to their grandparents house, so we invaded Megs. We made dinner and had dessert and a movie. Dinner was fabulous, as we were uninterrupted and got to eat while it was hot. We had no kids complaining about what they didn't like and we got to eat leisurely. SO WONDERFUL! I made a dark chocolate cheesecake that was so yummy, and we had drinks (well I drank a fancy lemondade since I don't drink alcohol) and the other ladies had some wine. I am so incredibly blessed to have these two amazing women in my life. THey have been such an incredible support system to me in the past year. They have loved on me and the kiddos so much in the last year I hadn't really known Tippany until the beginning of last summer, and she just flew into our lives, and took such wonderful care of me when I was pregnant with Preston. And then once I had him she continued to help by babysitting and helping clean etc etc. Meg has just been amazing for several years now. She has been such a tremendous prayer warrior and calming force in my life. Whenever I have any prayer requests, fear, anxiety, stressful situation, praise report etc I immediately text/call Meg and share with her. She is such a Godly woman, who has gone through so much in her own life and praises God throughout it all. I am so so blessed to have these ladies in my life!!!

Tuesday, August 7, 2012

Great New England Airshow

Our cousin Peter is in the Navy, and works on the fighter jets. He also occasionally works the "air shows" throughout the country. They had one locally so Peter and his wife Traci came up from Virginia for the show. We went down on sunday for the show. It was about an hour and a half drive, once we got there the kids wanted to wait in line to go inside one of the fighter jets, they waiting for about an hour in line, when it started to storm and they wouldn't allow people to go up in the planes! I felt so bad for Sammy. But he made the best of it and wasn't too disappointed. With the cruddy weather outside we went inside to check out some military vehicles that are antique or have been over in Iraq. Both kids thought it was pretty cool to be in vehicles that they thought Uncle Dennis might have been in... Waiting to get in the plane
Some photos that Sammy took of the planes...
Once the bad weather rolled in we went in one of the main hangars to see all of this equipment...
And Mr Preston with cousin Traci

Monday, August 6, 2012

Eosinophilic update

Haven't done an update lately.... It has been a roller coaster ride with Eos over the last two months with Sam. We have had a couple of good weeks at the beginning of the summer, followed by MANY MANY bad weeks. Days that were very scary to see him be so uncomfortable. I felt like this was the worst he has ever been. That being said, the last scope I allowed them to do, had him have a clean scope, meaning the Eos was gone. However less than two weeks later, it was (probably) back and much worse. I didn't allow a re-scope as it wouldn't have told us anything we didn't already know. The allergy testing has been unreliable up until the patch testing, which told us about the rice, rye, barley and egg. So once we had the repeat clean scope they said that we could allow him back one of the foods that he tested positive for. He chose eggs. Over a three week time span he had eggs in food, not plain eggs. And initially he was ok, but all of a sudden on week three he started having bloody stools, severe pain, and a variety of other symptoms. One friday night it was so severe I was terrified for him. I have NEVER been that afraid for him. We have been through so much, but that friday was horrible. He was passing all kinds of tissue and mucous. The doctors believe that he probably shed the lining of his intestines over that weekend. He lost about six pounds, and we still aren't back to normal. We obviously took the eggs back out his diet, and won't EVER introduce them back in. And to be perfectly honest I am not sure I want to trial anything ever again. I know that sounds awful but I don't ever want him to have another summer like this. Last week was another bad stomach week for Sam. We had had some time when he was having almost normal stools, but last week they became bloody again. I am not really sure what to think of this new development. We haven't given him anything that he shouldn't have. We haven't played with any of his meds. I guess this is the part of Eos that is most frustrating, things just happen and there is no rhyme or reason and therefore I can't fix it:-( It certainly hasn't been an all bad summer, but on the medical front it certainly has. In addition to the Eos stuff, he also has had a bit of a struggle with IVIG. After his reaction earlier this summer we have switched products to Privigen which seems ok, although after the last infusion he complained of a headache for three days! Poor guy, so I am praying that nothing gets worse with that. But we certainly have had fun amongst the chaos, and have gotten to see and do lots of new things. As we are edging towards first grade with this guy I am praying for health and happiness and no more curve balls thrown our way

Saturday, August 4, 2012

Platelet Dysfunction

Sam continues to have multiple bloody noses. It is awful, at least one but mostly more than one a day. Sam is taking it all in a stride but to me it is stressing me out. In the back of my nurse brain I keep thinking about the possiblity that he will become anemic if this continues. I am supposed to call the doctor on monday to see what I should do now. He gets active and starts bleeding. He's sleeping and starts bleeding. Every pillow in our house has a blood stain. Poor guy has blood stains on a lot of sheets. At this point I am feeling ok with the amount of blood he has hadd, but if he has much more bloody stool I am afraid he will get anemic. Please keep him in your prayers!

Friday, August 3, 2012

Amelia Park Children's Museum

Today my mom took Sam to the ocean with her and her friend and her friend's nephew. Sam and Landon play very well together, but only get to see each other a couple of times a year. They had a wonderful day and really enjoyed the waves. Unfortunately I have NO PICTURES:-( I have talked about this already but this week for Free Fun Friday we went to another children's museum. This one was absolutely incredible. Sophia had an amazing time with her friend Tristan. And Preston had a great time too. Tristan's mom Shannon is the amazing friend of mine that does photography. And wait until you see the new photos she just took the other day. Gorgeous!!!
Mr P had a blast crawling around and exploring too!