Monday, April 29, 2013
Last fall when we were in the process of determining if Preston had the immunodeficiency that Sam had we were told to not take him out where there were large crowds, and to keep him home when possible. I was feeling really bad about it, we had just spent a good chunk of time in the hospital, and had postponed his first birthday multiple times, so I was really struggling. And then Sam came home from school with some paperwork in his backpack about this program that is funded through a grant. It has been mistaken as Early Intervention but it is not. This program essentially is supposed to be an early literacy program. I signed Preston up, knowing that he wouldn't really be seeing much of the outside world and wanted him to be exposed to people other than us. It has been such a tremendous blessing. Our visitor is just the most wonderful, kind, compassionate person. I am so thankful for her. And Preston just adores her. She comes twice a week, and brings some type of educational thing for him, it alternates between a book and a toy. It has been so wonderful to see him interacting with someone outside of our family in such a positive way. Since we have started the IVIG, we haven't been nearly as isolated. I have taken him to one of the small playgroups that the grant funds as well. There are three other children there. Preston is the youngest and doesn't do much interacting with the other little boys but again it is getting him out and doing normal, non-hospital type things. This week the program funded a wonderful field trip for the kids to the Acton Children's Discovery Museum. Preston had a wonderful time. There was a train room, which it was no surprise he absolutely enjoyed. He also really enjoyed the water table, which was filled with warm water, of course he and everyone that was anywhere near him was fairly soaked when he was done playing. But he had a blast. The other area he really seemed to adore was the little diner. He sat on the stools up at the table, he served his home visitor Martha, he pretended to eat and pour coffee. It was so cute. There was also a ship themed room, in which he wore a little pirate captains vest. It was so cute! And then there were several other rooms that we didn't spend as much time in, a jungle room, a ball room, and a rainbow room. They were all so fun. It was so great to do something with just him and I, that wasn't medical related :-)
Saturday, April 27, 2013
I will be honest, when I learned that Sam was a boy I had all these thoughts and plans for him. I remembered how my parents when we were growing up encouraged us to try all kinds of activities, sports, instruments, gymnastics, church activities, drama, etc etc. My parents really really wanted us to find what we liked and encouraged us to do our best. And I had all kinds of thoughts of what Sammy would do. I wondered if he would play football like my brother did, or basketball like my sister, or baseball as I had played softball and soccer. As we learned about the bleeding disorder I was very sad for him, that he wouldn't have the same opportunities that I had had. And then this year, praise God he has been doing so well in regards to the bleeding disorder, that the doctor has cleared him to play sports! They have said that at this young age that the danger should be fairly minimal as there isn't much force behind a lot of the sports. So we gave him the decision to play baseball or street hockey. And he chose street hockey. His first game was so fun! I am just beyond thrilled that he has this opportunity. Even if he decides that he doesn't like it, I am just blessed that he gets to try. He loved his first game, and did really well. Matt's parents also joined us, so Sam was thrilled with that as well.
Friday, April 26, 2013
Matt and I went to the perinatologist and talked all about all my risk factors, and how this pregnancy is going. We had a lengthy ultrasound and visit with both the high risk and regular OB doctors. We actually found out what this little munchkin is, but since they aren't quite 100% we aren't sharing it. But everything looks wonderful! I wish I was one of those people that went into an ultrasound and was so excited about it. But I am not :-( I am always so concerned that something is going to be wrong with the baby and this time was no exception. First I was concerned that there was no heartbeat, and then I was concerned that there was a cardiac or brain anomaly. As the ultrasound went on and on, I just kept thinking that the technician was seeing things wrong and needed to make sure she had good pictures of everything. I feel terrible because I know this anxiety is totally from the devil, and that God has not given me a spirit of fear. But I did struggle for a good portion of the ultrasound. But I am rejoicing in the fact that the baby looked wonderful on this ultrasound and that the size is perfect, even though I have continued to lose weight. MAN! I wish I could lose weight like this when I wasn't pregnant. I am not quite sure how to get a good picture of the ultrasound pictures, but here they are. There is a picture of the baby giving a thumbs up, one of the baby sucking the thumb, and then a picture of what looks to be a BIG foot! I have a foot picture of all of my baby's, so I was very excited to get this one too. So we would love to have a name that starts with the letter "P". Got any good ideas that you would like to share? For girls I don't like : Penelope, Priscilla, or Paige. For boys I don't like Peter, Paul, Parker, or Patrick. This letter is hard! But I am hopefully that we can find something :-) Can't believe I am already 19weeks! God is so amazing! I am so thankful that things are going smoothly. And praying that they continue
Sunday, April 21, 2013
As you know we have had quite the struggle with Preston's health over the last several months. It has been a roller coaster ride, of hospitalizations, tons of medications, many doctors appointments, conference calls etc etc. When the GI doctors essentially threw up their hands and said he needed a fecal transplant of he would have to lose his colon and have a permanent colostomy, I was heartbroken and overwhelmed and scared. I knew regardless of what the outcome of the situation was that God would win the battle, and that all things would work for His glory. But I didn't know what that looked like, I didn't know if we would experience miraculous healing, or the transplant (which we were told would be a nightmare to get approval for) would go off without a hitch, I didn't know if he would need the surgery. I didn't have any of those answers... But what I did have was HIS strength. AS we have gone through the last several months of fighting the insurance, and researching at other hospitals to see if there was anything else treatment wise that we could do, I will be honest I got overwhelmed and so sad. I knew that God had my baby in His hands, but I wanted to know the outcome. After we had gone through the appeals process twice now with our insurance and then the outside reviewer, it was really hard. At the last denial, I just said to God "well ok You must have something better for us." I made some initial phone calls to other hospitals and to all his doctors to see if anyone else had any other plans. And then... Monday I got a call from the GI doctor. Now I had no idea what he was calling about, and was shocked when he said that he had good news. I couldn't even imagine what he had to tell me. As every prior conversation from him had been pushing me to complain to the newspaper about how my insurance would allow my child to lose his colon because they wouldn't pay for the transplant. So here we were a week after the final denial and he calls. He proceeded to tell me that he had gone to the President/CEO of MGH and told them our story and how he couldn't fathom giving our child a colostomy just because our insurance wouldn't pay.... He asked the hospital to pay for Preston's transplant. AND THE HOSPITAL SAID YES!!!!! I still can't believe that God has answered this prayer in such an unexpected way! We are so very thankful! We will probably be able to get him scheduled within the next two weeks, and I can't believe that this will all be behind us! Praise God for His answers to prayers!!!
Friday, April 19, 2013
I couldn't be any prouder of our law enforcement, military, etc etc etc that has come and gotten this terrorist today!!!! So much going on and some good news regarding P's transplant. Will post tomorrow but for now I am so so proud to be an American :-)
Sunday, April 14, 2013
Gosh things have been crazy around here lately. We are all doing ok but lots of stress and craziness. Preston has been struggling again medically this past week. His appetite has gotten worse, and although he typically has been an excellent drinker in the process of poor eating, even the drinking has slowed. We got the end of the end official notification about the transplant being denied from our insurance last week. At that point I had just really resigned myself to believing that God had a much better plan and that it was my job to wait patiently to see what happened. I started doing some research and looked into a hospital in Ohio that had a doctor that may treat him. So I started making all those phone calls to see where that would go. It would appear that we could go for a consult, but they wouldn't even look at his chart without us going there, so the expense of that was really overwhelming to me. I prayed about it and didn't really have clarification if this was what we were supposed to be doing In the mean time in talking with his pediatrician we both had come up with lots of questions/concerns etc for the GI doctor as well as his immunologist. Those questions were voiced to the different physicians but I have yet to hear back from them. Last week Matt's cousin contacted us and invited us to go to the circus with them. It was such a blessing, they so generously took care of the admission for us to take the kids. The kids had a great time. It was a smaller circus but they still had a great time. And then afterwards they were playing outside. Chris was holding Preston, when Preston had one of his famous stools that leaked on Chris :-( I feel so terrible about it still, Chris was fine but I still feel bad about it. We also got the opportunity to take the kids to see a brand new baby cow at my friends house, two weekends ago. Sam and Sophia were quite interested in the whole thing. They watched the calf nurse and it ended up being quite the science lesson for them. We then came home and read all about how milk goes from the cow all the way through the whole process of making it. This calf was named Star by my friends children, John and Catherine. Isn't she sweet?