P is still struggling and Abby and Bre come to visit

Preston continues to have a really tough time. His appetite is horrible and he is extremely irritable. Poor guy had a horrible night last night. He was completely inconsolable for quite a while in the middle of the night. Daddy prayed over him and we sang Jesus loves me over and over again until we got him calmed down. I brought him in to our pediatrician today and she is very concerned about how much weight he has lost. Unfortunately the doctor that did the transplant is out of the country and unreachable at this time. The on call for him has ordered a bunch of tests. So I will get that done in the morning. They are testing to see if the intestinal infection is back. I am just so overwhelmed with all of this. I feel like he is doing worse than he was before he had the transplant. I keep telling myself that it is just a hard recovery period for him but I am starting to wonder.... I heard a wonderful song today, that has just kept me focused on God and His goodness. The song is by Hillsong and it is called "Healer". One line of the song says " I know your my healer, I believe your more than enough for me..." Claiming God's healing for my little guy!!! The man who is singing this song in the video is actually battling cancer... Auntie Chantal, Abby and Bre came over to play the other day. I just love these three so much! I so wish that we could see each other more often and that our schedules/location weren't so difficult to work with. Preston and Abby had so much fun together, and Bre and Preston kind of butted heads a little bit :-)

Sophia's Preschool Graduation

I still can't believe my little lady has graduated preschool! And what is crazier is that when Sam graduated preschool I was pregnant in the pics, and now that Sophia is graduating I am pregnant again. The graduation was so sweet! Sophia was so excited. She is such a little ham for pictures most of the time. Preston really wanted to graduate from preschool too. He kept running up to the kids and tried to climb on Sophia's lap. They sang lots of songs and did motions to many of the songs. It was so cute! She was thrilled to get on a frilly dress even though it was terribly rainy outside when we were getting ready to leave the house They started the graduation singing a song to the toon of "The ants go marching one by one hurrah hurrah..." So the students walked in according to the number in the song. But it was to the tune of the students.... So cute AQDw/tudc89Efpns/s320/003.JPG" /> Once the kids came in they came and sat in their seats which were labeled with their names. There were 22 kids that graduated with Sophia. Throughout the entire ceremony the kids sung several songs. One of them had a part where they had to tickle each other, it was so cute to watch them. It was so cute when she got her cap put on and the tassel switched over and walked across to get her diploma After the kids had received their diplomas they started to get a little antsy, Preston included... We were so happy that Grandma, Meme' and Grandpa all got to come and enjoy the graduation with us. Sophia with her teachers.... Our family, unfortunately without Sam. The graduation was early in the day, and Sam misses so much school with sickness and doctors appointments that I just couldn't pull him out :-(...

Preston's Transplant

I am so very happy and thankful to tell you how God brought our boy through his fecal transplant today. In October he had a really tough time with the anesthesia, so much so that the nurses were telling me that it was scary for them! So answer to prayer #1: It can be very difficult putting a child of Preston's age under general anesthesia, sometimes there is lots fear and fighting of the mask they use, sometimes there is a shaking and twitching that looks like seizures, and my most miserable experience as a parent, is holding my baby as they go limp and lifeless in my arms with their eyes rolling back in their head as they go under anestheasia BUT NONE OF THAT OCCURED TODAY!!! Preston essentially just relaxed and wasn't nervous. He essentially seemed to just fall asleep in my arms. Aswer to prayer number 2: NO issues at all with anesthesia!!! Answer to prayer #3there were no complications getting to where they needed to go in order for the transplant to be successful, it can be difficult in little guys, but God opened the doors. Answer to prayer #4 No bleeding! This was my anxiety as when Sam had a procedure close to Preston's age he had a big hematoma form in his stomach that ruptured and he had a big bleeding episode. Answer to prayer #5 we are HOME!!! We didn't have to stay over, we have already spoken with the doctors a few times since we left and will probably be calling again in the morning, but we are home! We have some hurdles to get through but we are home and getting through them here... Pictures from today... This is pre procedure. Preston was so happy even though he hadn't eaten in so long. He was happy playing with new toys. And they actually brought the mask they use for anesthesia to him to play with and get used to. They put something in it to smell like strawberries so he kept smelling it. He even let his little toy car smell it... Once they brought him to the OR it felt like eternity before we got to see him again. It was really not even two hours, but it felt like forever. When we were first brought to him he was completely out cold. But looked completely peaceful and comfortable. He slept for almost an hour and a half before the anesthesia finally wore off. When he woke up he was not a happy camper for a bit but he eventually was ok. Since then he has had what appears to be severe pain in his bottom and belly. The doctors have instructed us to give him Tylenol but he is very uncomfortable and the Tylenol doesn't seem to be completely helping. He is trying to be such a trooper, but he is definitely hurting. Poor Sammy has been through so much medically himself that he has really been upset about all of this with Preston. He was so upset yesterday when Preston couldn't eat and was really questioning the doctors plans. Tonight he just snuggled with P and tried to make him feel better. They fell asleep snuggled on the couch...

Busy

It has been a busy but good week. I have gotten lots accomplished upstairs in the kids room. It is quite overwhelming trying to get things done on a time crunch while taking care of the munchkins but thankfully this week I am moving in the right direction. The kids have had a fairly good week. Sophia is still feeling intermittently poorly, and the doctor is unsure of what is going on still. I still haven't heard about her x-ray... But we are praying that she is back to normal ASAP. Sam has had a great week. He had a little bit of stomach pain on Tuesday night while we were at the Boston Pops but other than that he is doing well. Preston had a bit of a rough day yesterday, he had actually gotten his hands on some real milk which didn't settle well with him at all. He had a horrible day and lots of discomfort, but praise God today is a better day and He sent us some sunshine so that we could enjoy the playground today. Sam has IVIG tomorrow, please be praying for one stick for the IV. Thanks!!! Sam and Sophia get along so well most of the time, I just adore seeing them together, and then sometimes they fight so horribly. I guess it comes with the territory, but I would much rather see them like they are here. And Mr P is so serious but I just love this little guy so much!

Transplant!

We have a date: Preston's transplant will be on May 31st!!!! We are almost there, and almost to him being healed praise God!!! BUSY day will do larger post tomorrow

20weeks

Wow! It is surreal to think that I am already half way through this pregnancy. In all actually I am more than half way as they will deliver me at 36 weeks if I make it that far. I am feeling really ok, I am certainly exhausted ALL THE TIME but I think that might have something to do with three munchkins to care for as well. I am so very thankful that I have found a wonderful OB office and I feel so safe and comfortable with them. I haven't ever really felt "comfortable" since I almost died when I had Sam. My whole pregnancy with Sophia I felt like a ticking time bomb, waiting for everything to go wrong. With Preston I knew I was in the best possible place, but it was so far, and it was such a big practice etc etc. This time I have been seeing the same physician although I will be seeing a different one this next time. But with each visit they have been completely aware of my history and very keen on knowing exactly how I have been feeling. My blood pressures have been great, and they have been doing a ton of blood work. I don't know the results of this past weeks results yet, but they have all been fine prior, and the doctors will call with any changes. I have continued to lose weight, but it is starting to slow down. I started this evening with some right upper quadrant pain, which does certainly have me anxious. But I am praying and believing that it has nothing to due with my liver and that all is ok still.... I will wait it out at least through tomorrow unless it gets worse, and then will notify the doctor. At 20 weeks the baby is about ten inches long from head feet and is about 10 and a half ounces! It still amazes me about the miracle of life. If you think about 10ounces and you think about 10 inches, and then you think about all the organs and muscles and amazing things God created in there, it is hard to not be amazed. The baby is already producing meconium and practicing swallowing. It truly is a miracle of life :-) Psalm 139:13 For you created my inmost being; you knit me together in my mother’s womb.

Fecal Transplant

Well it would appear that Preston is sick again. :-( I am so overwhelmed as we head down this road with him again. I know that God has a perfect plan and that His ways are perfect. But today I am overwhelmed and scared and sad. He started with diarrhea on tuesday and it has progressed to very poor eating and worsening diarrhea. When I left a message the GI doctor, I wasn't really expecting that he would say that we were moving ahead with the fecal transplant plan. I hadn't actually spoken with the doctor as I had missed the phone call, but he left a message stating that he was starting the process with getting the insurance approval. I am relieved and overwhelmed at the same time. I am anxious as I don't want him to end up so ill that we end up in the hospital again. We have spent three weeks in the hospital fighting this already in the last few months. He has been on months of antibiotics, and still it seems to be rearing its head at us again. These few pics are from his last hospital admission. He really did well but I just don't want to go back there again. It is amazing how comfortable the boys are with the whole medical professional. I am so thankful that God has blessed them with these easy going personalities that just go with the flow and don't get anxious about the hospital. I am so blessed to be surrounded by such knowledgeable doctors and wonderful medical facilities. I am so blessed that my family is so supportive and helpful. I am so blessed to have such an amazing support system of friends that helps us so much with these sick kiddos. It is so true about God providing the people you need in your life. And He truly has! I certainly am overwhelmed but I know that God's got this! That He hasn't given me a spirit of fear, and that He will take us through to the other side with this beautiful little boy of mine :-)

Updates....P's 18 month check up

So hopefully soon I will have my computor back so I can catch my blog back up.... But for now Sammy is sick. I brought him to the doctor today, and essentially he has lots of swollen lymph nodes, a red throat, lots of fluid in his ears, nasal congestion and sinus congestion. Due to his C diff history we aren't starting antbiotics until he gets worse. So for now he is fairly irritable and crabby. And due to the platelet issue I can't give him most decongestants or antihistamines, and all I can give him for the sore throat is tylenol and he is saying that that doesn't help much. So prayers greatly appreciated. Preston is officially 18months old! I still can't believe how far we have come in the last six months with him. It has certainly been a roller coaster ride, but I am so blessed to be on this ride with him. We are surrounded by wonderful family and friends who have supported us and helped in countless ways throughout the hospitalizations and doctors appointments. We have amazing doctors on our team. And so many more wonderful people loving on this special guy of mine. He is really starting to take off with his babbling. He now says: Mom, momma, mommy, dad, up, hi, want, more, ear, eye and a few other random things he says once and then not again. He knows many of his body parts and points when asked: head, hair, eyes, ears, mouth, teeth, nose, tongue, neck, belly, arm, fingers, leg, toes, knee. He is starting to recognize the color yellow. He absolutely loves playing with any child, but especially with Sam and sophia. He is a climber for sure, and has taken to jumping now too. He is always falling and bumping his head on something, the poor guy. Eating continues to be a challenge, some days he eats ok, and some days are a complete flop. I am not sure if it is due to feeling poorly or if this is just a phase. The fecal transplant is still a possibility but it isn't guaranteed yet. We just have to wait and see how he does once we stop the several months of antibiotics. His weight today was 23lb 12oz and his height was 33inches. Tomorrow both boys are following up with GI. It will be an interesting appointment, as Sam has been having some stomach pain again, as well as two episodes of blood in his stool recently. Prayers for safe travels please as the weather isn't supposed to be that great :-(

I don't even know where to begin....

Gosh it has been so long. We have been on a roller coaster ride for last several weeks. Preston still seems to be struggling, but the struggle fluctuates on a day to day basis. He is still having lots of diarrhea, and intermittant severe belly pain. He was started on a second medication last week that is supposed to help get the intestinal infection under control. We are seeing a specialist next week, to discuss the possibility of a fecal transplant. Yes you read that right. They will actually put someone elses stool (Matt's) into Preston's colon to try to grow some good bacteria there to help fight this battle. The concern is that due to the immune deficiency that the bacteria from Matt could make him sicker too. So we aren't really sure what we are doing yet. Our immunologist has been doing some research as well, he actually has mentioned giving IVIG orally into his stomach and trying to see if that would make a difference. Please be praying for wisdom and strength and peace and hope for all involved. WE also have been to a geneticist. This appointment proved to be very emotional and overwhelming for me as I went alone. THey are thinking that there are a couple of possibilities of genetic syndromes for the boys. In doing research I don't believe either of them are correct, but I am no expert. So we will be waiting several weeks for the results of the DNA tests. We got a huge blizzard last week and Matt built a "quincy" for the kids. It is essentially like a snow cave. It is huge. They are hoping to sleep in it this weekend. I am so thankful that the kids have such an outdoorsy dad that allows them to have these cool memories. Preston is not a huge fan of the snow, but he might like it when he isn't feeling so crummy. The rest of us are doing ok. I am operating in what seems a continual state of exhaustion but each day I pray that God gives me the energy to get through the day and every day he meets that need :-)

A trip to the doctor for Preston

So I brought Preston into see Dr V today since the diarrhea has now been going on for 9 days and the fever for a week. She said he looked unwell, and he has lost some weight :-( since last week when I took him. She isn't sure what is going on. His stool still has blood in it, she sent it off for all kinds of tests and studies, and was also going to be calling the specialists in Boston to see what their recommendations would be. Please be praying for my boy :-) Thanks so much! I know God is totally in control but I am anxious right now. Praying for him to feel better and be happy and growing again. His weight was 22.9 today, and was 23.4 last week. On a happier note, the kids had a snow day today and had a blast playing out in the snow. I wish I could post pictures, hoping to get my computor fixed this coming weekend. I also had the priviledge of getting to know a new friend better! It was so fun learning about her family, and the journey that God has brought her on. I am always so blessed to hear of God's faithfulness in someone's life. THANK YOU for sharing!!!!

IVIG for Preston and severe belly pain for Sam

Today was quite the day. Today was the first day back to school for Sam. He got up well this morning and we made it to the bus stop just fine. Then Sophia, Preston and I went to my mom's so Sophia could spend the day with her. Then Preston and I headed into Children's for his IVIG. He was so serious when we arrived. I didn't expect him to remember from only being their one previous time. But I think he did. He would not smile AT ALL initially. He was so very sad when they put the IV in, but they got it on the first try. And they gave him tons of toys to play with so he did have fun. And it all went well. He took a nice little nap and all went fabulously.

We got home just in time for me to make dinner. Sam was a little irritable but was only complaining that he was hungry so I didn't think too much about it. He ate dinner really well and then was in excrutiating pain. He was like writhing in pain on my couch. It was awful to see. He did that before when he had the eosinophilic colitis, and I am prayign to God that it isn't coming back :-( I ended up giving him some papaya enzymes and it seemed to help. The GI doctor on call said it could be a colitis from the description I gave her, but I am praying it was just some fleeting hting