Monday, October 29, 2012
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:-)
Saturday, October 27, 2012
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...
Friday, October 26, 2012
Here are some more previews of Shannon's work. As always they came out amazing! Now to figure out which ones are our favorites:-)
Wednesday, October 24, 2012
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....
Tuesday, October 23, 2012
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...
Monday, October 22, 2012
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.
Wednesday, October 17, 2012
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?
Saturday, October 13, 2012
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!!!
Friday, October 12, 2012
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....
Monday, October 8, 2012
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.