Hurricane Sandy and rashes

So I try not to complain about Preston's poor sleep habits, but I just have to share this, since he first got sick in august he has not slept more than two hours at a time. And in the last two weeks or so, he has been up at least once, or up to three times an hour through the whole night. To say that I have felt like completely exhausted and wiped out would be the understatement of the year. He started getting this horrible rash when he was in Mass General, and it has gotten worse and worse. We have tried everything over the counter, been to the doctor three times and NOTHING was making it better. Last week the doctor said to restart one of the prescriptions of friday, so I did. But then yesterday I noticed that his skin was actually peeling now:-( So yesterday I called the on-call doctor and he told me a couple of things to do and called in ANOTHER prescription. And PRAISE GOD the rash is getting better! Preston slept for almost five hours last night! I am so thankful that God gave me this rest. Here is another photo that Shannon had taken of him, he was laughing and threw his head back, I just love this one:-)

They cancelled school all aroudn here for today because of hurricane sandy. So far it is just a little windy but it is supposed to get worse as the day goes by. Please be praying for all of the people that are having to be out in this storm. The first responders and the people who still had work regardless of this storm. Please pray for the people who are at risk of the most danger.

Sinus Infection

Well they are saying Sam has a sinus infection and we have started Zithromax, but he sure hasn't gotten any relief with it yet. It has been over twenty four hours, adn the poor kid is coughing so incessantly at times. Praying that the antibiotic kicks in soon and he can get some relief. The poor kid as soon as he lays down he immediately starts coughing. I know they say it is rare for adenoids to grow back, but with the way he has been breathing at night and the crazy amount of coughing he does at night I am starting to wonder.... Preston's stools seem to be getting looser which isn't a good sign:-( The vancomycin is supposed to be helping the intestinal infection.... Not sure. And you would not believe this kids poor rash. I just don't even know what to do for it anymore. It is so horrid. I can't even begin to fathom what could be done to make it go away. At times it seems as though it bothers him and at others it doesn't. Either way I sure do wish that it would go away. Not sure if you are fans of Pandora, but I am! I enjoy listening to it so much. You pick the genre, artist, song, etc and it plays. You build your own station and it is wonderful. I have a Christian station that I love to listen to and it played the most amazing version of How Great Thou Art today. It was sung by Carrie Underwood and Vince Gill. I found this version on YouTube. Listen and be blessed...

Family Photos

Here are some more previews of Shannon's work. As always they came out amazing! Now to figure out which ones are our favorites:-)

In other news Sammy is sick now, fever, croupy cough, sore throat and complaints of chest pain with coughing:-( IVIG is next week, so it isn't surprising that he is sick but please be praying for him, and for Preston that he feels better as well. Sam is starting zithromax

Vancomycin

This week has been kind of rough. Mr P has been struggling more and more with vomiting. His appetite has continued to suffer. Thankfully we have been blessed with a wonderful GI doctor. I had a very lengthy conversation with him and he then called another specialist that specializes in the exact intestinal infection that has caused Preston to be so ill. The concensus is that we will be giving him a VERY STRONG antibiotic for the next FIVE weeks! So far it has been a little bit of a challenge to get it into him but prayerfully this will get him feeling better once and for all. He has to have 1 teaspoon four times a day. I have a call in to the doctor to see if while he is on this strong antibiotic if we can get out and about more. I am not sure what they will say since he will still be susceptable to viral illness, but it would be nice if we could go to church or be around groups of people. Waiting to hear back... He is so cute and when he is feeling well he is so curious and silly. I am enjoying him so much! He has been such a blessing to our family, but I sure wish he was feeling well all the time, and that he didn't have to go through so much....

We have also become involved in this new program here in town. It is called the "Parent Child Home Program." I am not sure where it initiated but it is a state funded program, where someone essentially comes into the house each week (the same person) and brings P a new toy or book and plays with him or reads to him. She brought an Usborne book this time called "That;s not my puppy" and then he got to do his first little coloring craft project with his worker Martha:-)

James 1:17 (NIV) Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

:-(

So we went to meet our friends at the bike path the other day. Went into the garage and couldn't find Sam's bike. We then remembered that it had been next to the garage and not in it. But someone STOLE it:-( Poor kid was heartbroken. I feel so bad. He got to pick the bike out at the store so he really enjoyed it. Thankfully someone from Matt's work had given us one to use when he was bigger. It was definitely too big but at least he got to use it. He can't get started on his own but he does ok once he is going. Soph and her friend Alex road their scooters, they really enjoyed it, but they got pretty worn out...

Mr P has taken to a new hobby. He likes to rearrange my cabinets. We let him get into a couple of them so that it keeps him occupied while I am cooking. The kids like to say that he is going grocery shopping:-) He has really been eating poorly lately but there are a couple of things that he eats well, the little pouches of food are still a huge hit with him. His favorite is pumpkin, cranberry. Doesn't that sound yummy?

Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another -- and all the more as you see the Day approaching. —Hebrews 10:25

Busy Weekend

Wow this weekend was certainly a whirlwind. On friday evening we celebrated the marriage of our friend Mike and his new wife Lynne. The wedding ceremony was beautiful and I am so happy for them. Mike is one of the kindest, most self-less men I know. He gives constantly to those around him. I haven't had a ton of time getting to know Lynne, but she seems equally as sweet and caring as Mike, and we hold a special place in our hearts for all Child Life Specialists from Boston Childrens.

We also had family photos done. They came out amazing!!! Here is one preview before we get the rest

On saturday Matt and Sam went and hiked Mt Monadnock. Unfortunately Matt didnt want to take a camera so I have no pictures:-( While they were hiking Sophia Preston and I were at the Paradis family's home as I was decorating the birthday cake for their boys, Ben and Josiah. It was so fun! Meg's mom and I worked on the cake together, she with the fondant, I with the frosting. And then we frosted the cupcakes and the kids helped make the masks/faces for the Teenage Mutant Ninja turtles. It was great to just be able to spend time with Meg too! Love her so much!

On sunday Sophia, Sam and I got to go to church, while Matt stayed home with Preston. This whole isolation thing is so frustrating. I feel like he will not know how to respond appropriately if we are always keeping him away from people.... But he had a great morning with Daddy. And I was so blessed to go to church. After church we brought Preston over to my parents so that we could go to the birthday party. We had a great day!! And now are gearing up for a busy week:-) Ephesians 5:19 Speaking to yourselves in psalms and hymns and spiritual songs, singing and making melody in your heart to the Lord;

Flu Vaccine

I am a huge supporter of people getting the flu vaccine. Working in a hospital I see how sick people can get from the flu. And as my husband works in a school and I in a hospital we are 100% guaranteed to get exposed at some point. I have gotten the flu vaccine yearly since I was at least 18, my husband has gotten it since we have had kids. Neither of us has ever gotten sick from it. The kids also have each gotten it and have never had any problems or illness because of it. That being said Sammy has always gotten his, but becuase of the recent diagnosis of egg allergy that caused the eosinophilic colitis, I am so anxious about him getting the vaccine. I am praying that since it is a severe GI issue from it, that there won't be any other respiratory or other symptoms. He is getting his vaccine tomorrow, please keep him in your prayers. Anyone out there with a egg allergy in which it is soley GI symptoms? Have you gotten the flu vaccine anyways?

Fall Fun...

Sometimes a picture is worth a thousand words (PS Sophia wanted to stay clean and therefore didn't play in the leaves)

Intestinal infection again!!!

Well Mr P again has the intestinal infection. I can't say that I am surprised as we were still positive for it a couple days before we left MGH. However what is frustrating is that here we are nearly a month out and we are still sick from it! Poor little guy starting acting like he didn't feel well on wednesday. But thursday he seemed a little better, but thursday evening a little worse. So friday I brought him into the doctor before I went to immunology. I just wanted her to test and see if he had it again. So from there we dropped Soph off and then P and I drove into Children's. I wish we had known whether the infection was back or not while at Childrens, as I then could have told Dr B. At this point we are treating him at home with antibiotics and prayign that we can stay home and that God will heal this little guy of this illness once and foreall. Please be praying for healing! Thanks!!!

Immunology Update...

So I just can't get out of my own way these days. I just keep thinking back to when Sam was diagnosed with his immunodeficiency and how scary that was for us. And when I was thinking about it for Preston, my thought was that if it was the same, we could handle it and it wouldn't be a big deal.... Fast forward to now.... We saw Sam's immunologist this week. And although Preston has low T cells, B cells, and no response to some of the vaccines he has been given, it sounds like treatment will be similar to Sam. Although they each have different levels that are off, IVIG is treatment for both. It will stink to have to be driving back into Boston all the time again, and it will stink to spend whole days doing the IVIG for P and then another day for Sam, but at least this is familiar territory... Sam was fourteen months when we started down this road....

Looking back at these pics reminds me of how long ago we started this journey with Sam. But also how much the Lord has blessed us with so many wonderful friends, family, nurses, doctors and other staff throughout each stage of the process. We don't have a definite plan with Preston yet. They revaccinated him today and will recheck all his blood work in a month. If he continues to show no response, and if he continues to get sick in the next month, then we will probably be looking at IVIG, beginning in late november or so. We saw DR Baxi at Children's and he is amazing. He said that he believes we are headed down the same road as Sammy as far as the need for IVIG, but that he wanted to very clearly know that prior to starting. So vaccinated today and will redraw all labs in a month, and I am to keep track of his illnesses very closely between now and then. Sam and Soph put him in Sophia's baby crib the other day...

Being honest....

So I will be honest, dealing with Preston's illness has really really had me struggling. I feel so overwhelmed and stressed with the realization that P is sick too. I had started wrapping my brain around the thought that although it would stink if he had the same immunodeficiency tht Sam had, we would be ok. I had the attitude of "We've been there done that..." Yes I was thinking htat yep it would totally be stinky but that I could handle it. But that is not the case... It would appear that Preston's immune stuff is worse and more complicated than Sam. And I was really letting that scare me. But I am so thankful for a God that reminds us ever so gently that He doesn't want "ME" to handle it, He wants to carry the burden and us through it. It hit me so clearly this week. I was feeling so anxious and scared thinking that I didn't know how "I" could handle this, but praise God I serve the ONE who can handle this for us. Yesterday God reminded me again of how He provides in every situation, in unexpected ways. I had been feeling so sad that we hadn't celebrated Preston's birthday, and since we had already rescheduled 3x I was just feeling like we had to get it done. I was stressed about exposing him to lots of people, stressed about having tons of people at our house and even more stressed about decorating, feeding and entertaining people when I was feeling so overwhelmed and exhausted. And then my amazing friend, who is more like a sister, offered to host P's party at her house!!! I am still so amazed that she offered this tremendous blessing to me. Yesterday turned out beautifully! I am so very thankful to everyone who helped celebrate Preston and his first birthday. To Megan and Jeremy, thank you from the bottom of my heart! I am so very thankful for your love prayers and friendship. You made a beautiful day for Preston. I had all these great plans for his birthday, and had been workig diligently getting things done. And then I just got so overwhelmed that I couldn't get out of my own way. And then God AGAIN reminded me that EVERYTHING is possible with Him, and that it never was MY party to do. It was all in His hands from the beginning, and when I "Let Go and Let GOD" all things worked amazingly well. I ordered this amazing outfit and bib to go with our Very Hungry Caterpillar by Eric Carle theme. I ordered it from The Fresh Vintage Shop. The owner of the shop was amazing to work with. I am ordering some clothes for Sophia next. I HIGHLY recommend her.

How sweet is this?

The romper had fruit embroidered on his bottom

This is the best made bib I have seen, super absorbant and so well made. Not to mention tremendously cute In going with the Hungry Caterpillar theme there is all kinds of ideas out there. My best friend Chantal worked on decorations, as did I. And then at the party my friends Meg and Tipp just did such a great job turning my desires into reality. Everything looked so cute...

He had so much fun opening and CLIMBING on his presents...

I made cupcakes and cake that were "Sammy safe." I made chocolate and vanilla. Preston REALLY enjoyed his...

For some reason the rest won't upload right now....Will add some more tomorrow. But I just want to encourage those out there that are struggling with something. YOU don't have to do it alone, REALLY TRULY LET GO AND LET GOD! When I let go and gave it to God an opportunity that I never knew existed occured. I would have never asked someone to host a part for me... But in giving my stress to God, it allowed my amazing friends to be vessels for His glory! Let Go and Let GOD, and wait until you see how God will work in your situation!!!