When life is just too busy....

Gosh I just can't keep up these days. This whole back thing has totally slowed me down, but becuase I am moving so slowly I am running behind in EVERYTHING. We have had a crazy busy few days but are doing ok. Sam had IVIG on friday and it went well. The IV went in on the first attempt PRAISE GOD!!! Such an answer to prayer on that one. He tolerated the infusion well, and he was able to watch that new movie that was released "The Lorax." Which my kiddos really enjoyed. They had watched it in the theater when it was first released but hadn't watched it since. So he really enjoyed it. And I was so blessed to have Auntie TeeTee join us for the infusion. Preston has had a really rough last week or so, with loose stools, irritability and poor appetite. So I was so thankful to have auntie TeeTee to help with Preston, and she has always wanted to come and support Sam during his treatment. Auntie TeeTee lives in Oregon, but we have been spoiled having her around the last few months, and have really enjoyed spending lots of time with her.

And then on saturday my youngest sister needed a ride to work so I drove over to my parents to pick her up. I left Sam there with my dad when I brought Doreen to work. When I came back to grab Sam there was a guy outside talking with my dad. He introduced himself to me and called me "M'am", so I totally was thinking he was military. And he was. He was a buddy of my youngest brother Dennis' who when Dennis had met up here recruiting. He was coming over to my parents house to help my parents with their yard. Since my dad has been struggling so much health wise the last several months he has been unable to do all the yard work. So God bless this soldier who spent his day off, edging, line trimming, weed whacking, poison ivy killing, and lawn mowing someone else's house. My dad made comments such as that he felt guilty, and this man said "Don't ever feel guilty, Dennis is my brother and that makes us family, and families help each other..." What a tremendous blessing! I can't even say how much it blessed my heart to see this this weekend. I know that God has filled our lives with absolutely amazing people who truly are gifts from God, but I am just so thankful for our military and for the sacrifices they make here and around the world. Thank you kind men/women for your service EVERYWHERE! And thank you sir for blessing our family so tremendously!!! The kids had a BLAST riding on his lawn mower with him

Please keep Preston in your prayers. He has had a really rough past week but since thursday it has been even worse with explosive diarrhea, and now a rash that looks eerily similar to chicken pox. I am praying that it isn't as we have been around lots and lots of people, but am not sure yet. Poor guy has been having lots of diarrhea and fussiness though. We will be headed into the doctors tomorrow. I also have my MRI of my back tomorrow so please keep that in your prayers as well. Thank you so very much!!!

MRI Results

Phew what a day it was!!! First off my mom was supposed to come with me today so that I didn't have to go alone. I HATE going to major appointments by myself. My mom almost always goes with me, once when Sam was about a ayear and a half I said that it was no big deal for her to not go with me, well of course that was the day that they thought he possibly could have leukemia, and I was ALL BY MYSELF. That drive home was absolutely horrible, since that time I try really hard not to go to new appointments or procedures by myself. I would hate to be alone to get difficult results. But alas, my mother woke up very sick this morning and therefore was unable to join us. So it was Preston and I.... We got to the pediatric MRI area, where they had no record of us coming in today...they sent us to another area and these people were wonderful. They explained everything that was going to happen, asked me all kinds of questions and allowed me to ask whatever I wanted to. If you haven't ever had an MRI or haven't seen one, it is this huge round machine with a little tube that you slide into on a hard table. So what they did to PReston was have me lay him on the table with his head between two blocks and then they taped across his forehead to the blocks. They also rolled all kinds of blankets around his head and then put this cage like contraption over his head. I then inserted his little wubba nub in through the cage. They swaddled the rest of his body but then had me LAY ON TOP of him to help hold his chin in place! It was nuts! I am so thankful I wasn't claustraphobic because that would have been awful....And this is what we got today:

That is a picture of Preston's 100% NORMAL head and brain!!! I am rejoicing tonight in God's goodness to my family and I. I am just so relieved and thankful that Preston is ok. HE was as thrilled as I was

Something kind of comical: Last night after I got the results of Sam's colonoscopy/endoscopy (will post all about it tomorrow) I was totally throwing myself a pitty party. I have recently heard some friends complaining about how hard things are with their child's school, or their naughty behavior, or the struggle to get them to eat etc etc. I wanted to be that "normal" mom who had completely normal sometimes trivial complaints. I just wanted to be NORMAL!!! So today to exacerbate those feelings of wishing things were different the neuro surgeon asked me if I would like a picture of his brain for his baby book!!!! Yep that's pretty normal right? Do you have a picture of your baby's brain in your baby book? It isn't funny but it just kind of puts things in a nut shell for me:-)

MRI tomorrow

Please say a prayer for Preston as tomorrow is his MRI. WE have to be there an hour early, but other than that they really haven't told me too much about how things are going to go tomorrow. I do know that we will have a doctors appointment about two hours after MRI and the neuro surgeon should be able to give us results. So please be praying for my little guy, and for me as I am trying to not be anxious, and to keep my eyes focused on God. I am reminded in this stressful time of an amazing song....

Official MRI results

So essentially Sophia's MRI results are inconclusive as to why she is having so much pain:-( We are rejoicing in the fact that there is no tumor, or signs of cancer, but so frustrated to still not have answers as to why she has so much discomfort. What they have seen on her bone is "fibrous tissue growth", the orthopedic doctor has said that he hasn't seen it require surgery, but that he has also never seen it cause as much discomfort for as long as it has in Sophia. So we are restarting physical therapy and praying for healing. If the pain gets worse I am to call for an emergency appointment, if it stays the same or gets better we see him again the beginning of april...So we are praying for healing for my sweet girl

MRI results, IVIG fiasco and Christmas blessings

Goodness, it has been such a crazy week!!! I am rejoicing today in the fact that Sophia DOES NOT have a tumor or any form of cancer on her bone! I am so thankful and relieved. I didn't even realize the stress that I was carrying around while waiting for the MRI and then the results. I was speaking with my cousin yesterday and she really helped me put things into perspective when she said "GOD knows!" And He does, no matter what the outcome, no matter what my thoughts/feelings are God knows, and I am so grateful to have that knowledge. So yesterday morning to add to the craziness of our week, I opened our mail and it stated that Sam's IVIG had been denied! As this had never happened before I didn't know even where to begin with fighting it. He was actually due for his treatment yesterday and I panicked thinking that it was a holiday weekend and that he would be exposed to tons of friends and family throughout the weekend, and that we would end up in the hospital next week....But praise God, things have worked out! God opened the doors for the approval to go back through and we went in tonight for his IVIG. Unfortunately it was a HORRIBLE day for an IV for Sam. It took eight attempts and three nurses to finally get an IV in him. I just feel so awful when that is what happens to him. Thankfully he is such a trooper but I wish he didn't have to be. I really wish that we could get a port for him but his immunologist doesn't think that this is a good idea. His multiple other doctors think that it is though....I thought as he got older IV access would get easier but it hasn't yet. This week has been a complete and total roller coaster ride! But throughout the whole thing God has been beside me carrying me through. It is so strange to think back this week to how things have been absolutely crazy, but that in each and EVERY situation God was right there seeing us through. How amazing is he??? Tomorrow is Christmas Eve and I am so ready to celebrate the miraculous coming of our Lord to this earth!!! Praising God tonight, knowing that He is a God of miracles, and that regardless of our circumstances that NEVER CHANGES!!!

Sophia's MRI

We arrived to Children's around 11 yesterday and went right up to the MRI department. By this point, Sophia was complaining that she was hungry, and unfortunately since she was being put to sleep I couldn't feed her anything. She really tolerated being hungry well though, and I am so thankful. My mom came with us and gave her two new Christmas books so she was really excited to read those while we were waiting. I am so thankful that my mom was able to come with us. She was able to stay with Preston while I went with Sophia until she was sedated.

After about a half hour or so of waiting we were brought to the triage area. They did height weight and vitals on Sophia. She weighed 30lb 6oz! She is such a peanut. She was not at all anxious about any of this and was kind of enjoying all of the attention. Her hands were freezing cold so the nurse game her little hot packs taped to her hand, which Soph LOVED!!!

The nurse got everything ready for the IV outside of the room so Sophia didn't get scared. The nurse came in and had the IV in in about fifteen seconds! She was fast and Sophia cried for only a minute or two. But you should have seen the scowl on her face afterward! It was a little bit comical, every time the nurse came in she gave her "the look!" Thankfully at Children's they allow you to stay with your children before they undergo anesthesia. So I went into the room with her and rocked her in a rocking chair while they put the sedation meds through her IV. Then I laid her down and left the room. I am so thankful that I can be there with her, but it is the most horrible thing in the world, to watch your child's eyes roll back in their head, and go limp and lifeless in your arms. The test took a little over an hour, and then they came and got me and brought me to the recovery room with her, and she was still asleep. So she never knew that I wasn't there with her. She was so out of it, for HOURS afterwards!!!

Since she slept for so much of the day yesterday she was WIDE AWAKE when we got home at 6:15pm and stayed that way until after 11 last night! I was completely exhausted but she was not even a little tired. So we painted some giant Christmas pictures, and had some great one on one time together. And I finally made her lay down at 11:15 and it took her forever to fall asleep, and then she was up before 6:30 this morning!!!

And now we wait...I initially was told that we wouldn't have the results until we follow up with Dr Kasser after Christmas, but yesterday the nurses said that I could probably get some preliminary results before. I called the office this morning, and am waiting to hear back from the nurse or from Dr Kasser. Please pray for us as we await these results, that God will give us peace, and that whatever the results are we can walk forward in faith knowing that He is in control, and that we have nothing to fear.... John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

Sophia's MRI is tomorrow and her school play:-)

Sophia had her nursery school play last night. And oh how I enjoyed it! She is such a little performer, and seemed to absolutely love being up in front of everyone. She sang her little songs and did such a great job. She was so animated, and kept making her sweet little smiley faces at me. They actually went to school several weeks ago, and each child was assigned a part in the play. Throughout the couple of weeks the children got dressed in their costumes and they were photographed acting out the Christmas story. They then put it to music and that is what we watched last night. I am going to try to figure out how to get that on the blog, but I am not quite sure how to do it. The kids also got on stage and sung a few songs. It was so fun! I feel so blessed to be able to send her there.

My parents were able to join us at her play and she was thrilled to have them there:-)

I am so thankful that things have been so crazy in the last few weeks. It has really been a blessing in disguise, distracting me from the what if's of the MRI tomorrow. I am absolutely dreading the whole thing for her. She is so sensitive and scared of medical stuff, I am not sure if it is because of what she has seen with Sammy or if this is just her normal, but regardless she is scared and my heart hurts for her. She is no longer allowed to have anything to eat after 3:30 in the morning, and she may only have clear liquid until 9am, then nothing. I am sure the no eating part will be no big deal for her, but the drinking may be a problem. They will be completely putting her to sleep to do the MRI, and then hopefully we won't hear anything until January 2nd. I know that sounds crazy but in this case, no news is good news. We have been told that if it is nothing major that we won't hear anything until our follow up appointment with Dr Kasser. Uggghhh it's going to be a long week to two weeks. But I am believing for my little girl, that there isn't a tumor or anything similar, that she will be just fine. But will you please pray for her? Thank you!!!